Body Integrity Identity Disorder and Cyborgs:
An Exploration of the Ethics of Elective
Amputation and Enhancement Technologies
A thesis submitted to the University of Manchester
for the degree of Doctor of
Bioethics and Medical Jurisprudence
in the
Faculty of Humanities
2021
Richard B. Gibson
Centre for Social Ethics and Policy
TABLE OF CONTENTS
PRELIMINARIES
ABSTRACT ...... 6
DECELERATION AND COPYRIGHT STATEMENT...... 7
DECLARATION ...... 7
COPYRIGHT STATEMENT...... 7 DEDICATION ...... 8
ACKNOWLEDGEMENTS ...... 9
THE AUTHOR ...... 10
EDUCATION ...... 10
PUBLICATIONS AND CONFERENCE PAPERS ...... 10 DESTINATION ...... 12
TABLE OF STATUTES ...... 13
TABLE OF CASES ...... 14
PART I INTRODUCTION
CHAPTER I THE QUESTION ...... 17
CHAPTER II BODY INTEGRITY IDENTITY DISORDER: AN OVERVIEW ...... 24
2.1 BODY INTEGRITY IDENTITY DISORDER AND GENDER DYSPHORIA ...... 32 CHAPTER III PHILOSOPHICAL AND LEGAL BACKGROUND ...... 34
3.1 INTRODUCTION ...... 34
3.2 AUTONOMY AND THE CAPACITY FOR CONSENT ...... 35
3.3 BENEFICENCE ...... 39
3.4 NONMALEFICENCE ...... 52
3.5 JUSTICE ...... 62
3.6 THE LEGAL LANDSCAPE OF HEALTHY LIMB AMPUTATION IN CASES OF BIID ...... 65
3.7 CONCLUSIONS ...... 83 CHAPTER IV PHILOSOPHICAL AND LEGAL APPROACH ...... 91
4.1 INTRODUCTION ...... 91
4.2 WHY HEALTH, DISABILITY, AND NEUROPROSTHETICS? ...... 91
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4.3 BACKGROUND ASSUMPTIONS AND GROUNDING PRINCIPLES ...... 92
4.4 THE EMPIRICAL, THE SOCIAL, THE NORMAL, AND THE PATHOLOGICAL ...... 96
4.5 ETHICS, LAW, AND THE LIMITATIONS OF LEGISLATION ...... 119
4.6 CONCLUSION ...... 126 PART II THE ARTICLES
CHAPTER V ARTICLE ONE: THE DESIRABILITY OF DIFFERENCE: GEORGES CANGUILHEM AND BODY INTEGRITY IDENTITY DISORDER ...... 130
5.1 ABSTRACT ...... 130
5.2 INTRODUCTION ...... 130
5.3 BODY INTEGRITY IDENTITY DISORDER ...... 134
5.4 THE NORMAL AND THE IDEAL ...... 138 5.5 BOORSE AND CANGUILHEM ...... 141
5.6 HOW DO THESE TWO ACCOUNTS UNDERSTAND AND TACKLE DISABILITY? ...... 143 5.7 HEALTHY LIMB AMPUTATION AND CANGUILHEM ...... 145
5.8 CONCLUSION ...... 147 CHAPTER VI ARTICLE TWO: ELECTIVE IMPAIRMENT MINUS ELECTIVE DISABILITY: THE SOCIAL MODEL OF DISABILITY AND BODY INTEGRITY IDENTITY DISORDER ...... 149
6.1 ABSTRACT ...... 149 6.2 INTRODUCTION ...... 149
6.3 NONMALEFICENCE AND BIID ...... 152
6.4 THE SOCIAL MODEL OF DISABILITY ...... 157
6.5 THE SOCIAL MODEL OF DISABILITY AND ELECTIVE AMPUTATIONS ...... 159
6.6 THE CREATION OF DISABILITY IN CASES OF BIID ...... 160
6.7 THE CREATION OF IMPAIRMENT IN CASES OF BIID ...... 161
6.8 CONCLUSIONS ...... 168 CHAPTER VII ARTICLE THREE: ELECTIVE AMPUTATION AND NEUROPROSTHETIC LIMBS ...... 170
7.1 ABSTRACT ...... 170
7.2 INTRODUCTION ...... 170
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7.3 HEALTHY LIMB AMPUTATIONS AND BODY INTEGRITY IDENTITY DISORDER ...... 172
7.4 NEUROPROSTHETICS: WHERE ARE WE NOW AND WHERE ARE WE GOING? 181
7.5 ELECTIVE AMPUTATION AND NEUROPROSTHETIC LIMBS ...... 183
7.6 CONCLUSIONS ...... 187 CHAPTER VIII ARTICLE FOUR: NO HARM, NO FOUL? BODY INTEGRITY IDENTITY DISORDER AND THE METAPHYSICS OF GRIEVOUS BODILY HARM ...... 189
8.1 ABSTRACT ...... 189
8.1 INTRODUCTION ...... 190
8.2 CURRENT ATTITUDES TO THE HARM COMPONENT OF GBH IN ENGLISH LAW ...... 192
8.3 WHY THE CLARITY OF HARM IS NEEDED ...... 195
8.4 BIID AND THE SMITH AMPUTATIONS ...... 197
8.5 METAPHYSICS OF HARM IN GBH ...... 201
8.6 CONCLUSION ...... 215 PART III CONCLUSION
CHAPTER IX CONCLUSION ...... 219
9.1 INTRODUCTION ...... 219
9.2 PRINCIPAL ARGUMENTS ...... 224
9.3 CONTRIBUTION TO THE LITERATURE ...... 230
9.4 FUTURE RESEARCH ...... 233
9.5 CLOSING REMARKS ...... 234 APPENDIX A...... 237
APPENDIX B...... 249
BIBLIOGRAPHY ...... 274
Word Count (Including Footnotes but excluding Bibliography): 67,483
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PRELIMINARIES
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ABSTRACT
The question of whether healthy limb amputation is an ethically and legally viable treatment option for those suffering from Body Integrity Identity Disorder (BIID) has received a modicum of attention and attracted a significant amount of controversy within both the bioethical community and beyond. In this thesis, I examine this question, taking as a foundational position that merely because the desire for healthy limb amputation is unusual, this is not ipso facto symptomatic of a catastrophic impairment to one’s capacity to make healthcare decisions. I then explore the plethora of arguments employed by opponents and proponents of such operations from both a philosophical and jurisprudential approach. Following this, a justification for the narrowing of this thesis’ focus will be provided. Then, in my thesis articles, I take a normativist approach to the phenomenon of disability. I question whether the harms associated with being disabled are necessarily intrinsic, and thus, challenge whether intentionally causing someone to become disabled is, by its nature, a harmful action and one which should be prohibited.
In Paper One, I ask whether the practice of healthy limb amputation is antithetical to the goal of medical treatment, that being health’s restoration and maintenance. Drawing on Georges Canguilhem’s work, I refute a naturalistic dismissal of such operations and argue that by employing a nuanced model of health, therapeutic, healthy limb amputation can indeed conform to what one may consider the ‘inner morality of medicine’.
Paper Two explores the relationship between the ethical evaluation of healthy limb amputation and the supposed harm of causing someone to become disabled. Through surveying the question via a lens of disability studies, and expressly according to the Social Model of Disability, I challenge the prima facie harms assumed to be inherent in limb amputation.
Taking this detachment of disability and impairment further, in Paper Three, I investigate the impact that neuroprosthetics will have on the ethical viability of healthy limb amputation for BIID. I explore how the development of sophisticated artificial limbs could dramatically impact the ethical debate around treatment for BIID, and especially, how arguments based on the harms of conferring disability on the previously non-disabled could lose their persuasive power.
In my final paper, I turn to the legal consideration of healthy limb amputation. I detour from the typical, theoretical, legal defence from GBH for a surgeon facilitating such an operation, built upon the ‘medical exception’. Instead, I explore the lack of ontological clarity regarding the concept of harm within English law. From here, I propose that with a more developed idea of what harm is, the act of therapeutic, healthy limb amputation may not be harmful, and thus, a surgeon’s actions would not qualify them for a charge of GBH.
Ultimately, this leads me to tentatively conclude that the practice of healthy limb amputation is a potentially ethically and legally viable treatment option for those with BIID. However, such a conclusion is only preliminary. A substantial amount of work still needs to be done regarding the disorder to take this conclusion from a cautious, circumstantial endorsement to a full-blown, unrepentant advocation.
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DECELERATION AND COPYRIGHT STATEMENT
DECLARATION No portion of the work referred to in the thesis has been submitted in support of an application for another degree or qualification of this or any other university or other institute of learning.
COPYRIGHT STATEMENT i. The author of this thesis (including any appendices and/or schedules to this thesis) owns certain copyright or related rights in it (the “Copyright”) and s/he has given The University of Manchester certain rights to use such Copyright, including for administrative purposes.
ii. Copies of this thesis, either in full or in extracts and whether in hard or electronic copy, may be made only in accordance with the Copyright, Designs and Patents Act 1988 (as amended) and regulations issued under it or, where appropriate, in accordance with licensing agreements which the University has from time to time. This page must form part of any such copies made. iii. The ownership of certain Copyright, patents, designs, trademarks and other intellectual property (the “Intellectual Property”) and any reproductions of copyright works in the thesis, for example graphs and tables (“Reproductions”), which may be described in this thesis, may not be owned by the author and may be owned by third parties. Such Intellectual Property and Reproductions cannot and must not be made available for use without the prior written permission of the owner(s) of the relevant Intellectual Property and/or Reproductions. iv. Further information on the conditions under which disclosure, publication and commercialisation of this thesis, the Copyright and any Intellectual Property and/or Reproductions described in it may take place is available in the University IP Policy (see http://documents.manchester.ac.uk/DocuInfo.aspx?DocID=24420), in any relevant Thesis restriction declarations deposited in the University Library, The University Library’s regulations (see http://www.library.manchester.ac.uk/about/regulations/) and in The University’s policy on Presentation of Theses.
Richard Byron Gibson Submission date: 3rd December 2020
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DEDICATION
This thesis is written in memory of the 2020 we all wanted but never got, and in pure spite of the 2020 we got but never wanted.
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ACKNOWLEDGEMENTS
Foremost, I would like to thank my supervisors Søren Holm and Margot Brazier, both of whom have tirelessly responded to my academic meanderings with nothing but support, curiosity, and just the right amount of constructive criticism. Not only have they supported me in the creation of this thesis, but they have also furnished me with advice in many of my other academic endeavours, several of which, while falling outside their areas of expertise, have been far stronger pieces of work because of their input. I feel Margot deserves additional credit for meeting my initial tentative steps into legal criticism and the jurisprudential arena with saint-like patience and magnanimity.
I have been immeasurably lucky to have been surrounded by some truly wonderful people during my time at the University of Manchester, many of whom have themselves been involved in the Centre for Social Ethics and Policy and on the Bioethics & Medical Jurisprudence programme. A special mention must be given to Chloe Romanis who, while not only being an outstanding lawyer, has also been my stalwart drinking buddy from day one of the PhD. Additionally, she has granted me more than my fair share of proofreads and paper reviews, for which I am ever so grateful. An expression of thanks must also be given to Dunja Begovic, Ajmal Mubarik, and Anna Nelson for taking the time to cast a critical eye over this thesis; your recommendations were invaluable.
Having done my undergraduate and master’s degrees at UWE and KCL, respectively, I have made countless trips away from Manchester to Bristol and London during the three years of my PhD, catching up with old friends and past colleagues. Thus, thanks must be given to Kate, Kiff, and Shayda. All three of you saved me no small fortune by letting me crash on your sofas/spare beds. Furthermore, you have been first-rate friends, companions, and confidants, so thank you for that as well.
It would be remiss of me not to apologise to my long-suffering housemates Naomi and Róisín for tolerating my slow descent into PhD-induced eccentricity and, dependant on one’s point-of-view, madness. This expression of contrition goes two-fold for Winona, our resident cat. I am sorry for making you dance so much.
Necessity also requires that I express my gratitude to the University of Manchester’s Department of Law for awarding me a scholarship and making it financially possible for me to do my PhD in the first place. Without that scholarship, this thesis would not exist. Furthermore, thanks must be made to Jackie in the TLSEO. Your determinism in supporting the PGRs in the Law and Criminology departments has been a godsend for many, myself among them.
Finally, thanks must be given to my family. They have always expressed support for pretty much everything I have done, but especially in my academic endeavours. Without their encouragement, I am not entirely sure what it is I would be doing, but I am confident it would not be writing an acknowledgement section of a PhD thesis.
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THE AUTHOR
EDUCATION The University of Manchester September 2017 – February 2021 Course Title: PhD Bioethics and Medical Jurisprudence Awards and Successful Funding Bids: Faculty of Humanities Doctoral Studentship, Society for Applied Philosophy Travel Grant, Society for Social Studies in Science Travel Grant, Institute of Medical Ethics Conference Attendance Grant. Thesis Title: Body Integrity Identity Disorder and Cyborgs: An Exploration of the Ethics of Elective Amputation and Enhancement Technologies.
King’s College London September 2014 – December 2015 Course Title: MA Bioethics and Society Modules: Disability and Enhancement; Dissertation in Bioethics and Society; Designing Qualitative Research for Social Science and Health; Foundations of Bioethics and Society; Case Studies in Bioethics and Society; Foundations of Social Science, Health and Medicine. Dissertation Title: Transmetropolitan and Black Hole: A Graphic Illustration of Theories of Disability
The University of the West of England September 2010 – June 2013 Course Title: BA Philosophy Modules: Democracies or Dictatorships?; Ideas and Power; Introduction to Philosophical Studies I; Ancient Philosophy; Contemporary Political Philosophy; Ethics; Metaphysics: Being, Appearance and Reality; Kant; Ethical Issues in Politics; Philosophy Project; Philosophy of Mind; Philosophy of Film. Dissertation Title: Understanding Human Enhancement
PUBLICATIONS AND CONFERENCE PAPERS Peer-Review Publications Gibson, R.B., 'The Desirability of Difference: Georges Canguilhem and Body Integrity Identity Disorder', forthcoming in the Journal of Medicine and Philosophy. Gibson, R.B. (2021), ‘Elective Amputation and Neuroprosthetic Limbs’, The New Bioethics, vol. 27(1), pp.30-45. doi: 10.1080/20502877.2020.1869466. Gibson, R.B. (2020), ‘The Epidemiology of Moral Bioenhancement’, Medicine, Health Care and Philosophy, vol. 24(1). doi: 10.1007/s11019-020-09980-1. Gibson, R.B. (2020), ‘No Harm, No Foul? BIID and the Metaphysics of Harm in GBH’, Medical Law International, vol. 20(1), pp.73-96. doi: 10.1177/0968533220934529. Gibson, R.B. (2020), 'Elective Impairment minus Elective Disability: The Social Model of Disability and Body Integrity Identity Disorder', Journal of Bioethical Inquiry, vol. 17(1), pp.145-155. doi: 10.1007/s11673-019-09959-5. R. Gibson (2018), 'Graphic Illustration of Impairment: Science Fiction, Transmetropolitan and the Social Model of Disability', Medical Humanities, vol. 46, pp.12-22. doi: 10.1136/medhum-2018-011506.
Open Peer Commentaries Gibson, R. (2018), 'The Democratization of Facial Feminization Surgery and the Removal of Artificial Barriers', American Journal of Bioethics, vol. 18(12), pp.29-31. doi: 10.1080/15265161.2018.1531169
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Book Chapters Gibson, R.B., 'A Body Beyond the Norm: Reframing Disability and Impairment in Science Fiction', forthcoming in G. Miller, A. McFarlane, J. Haran, & D. McCormack (Eds.), Edinburgh Companion to Science Fiction and the Medical Humanities.
Blog Posts Gibson, R.B. (2021), ‘Can a Global Vaccine Strategy Prioritizing Covid-19 Variant Hotspots be Ethical?’, The American Journal of Bioethics Blog, https://www.bioethics.net/2021/01/can-a-global-vaccine-strategy-prioritizing-covid-19- variant-hotspots-be-ethical/ Gibson, R.B. (2020), ‘The Happy Life of Bob’s Burgers’, Philosophy and Pop Culture Blackwell Series, https://andphilosophy.com/2020/09/24/the-happy-life-of-bobs-burgers/ Gibson, R.B. (2020), ‘COVID-19 and the Refutation of Normality’, The American Journal of Bioethics Blog, http://www.bioethics.net/2020/04/covid-19-and-the-refutation-of- normality/
Conference and Workshop Presentations Event: King’s College London Bioethics & Society Coffee Break; 9th December 2020; online. Contribution: Informal Discussion Title of Talk: 'Coffee Break with Richard Gibson' Event: Northern Bioethics Network Meeting; 8th November 2019; Manchester: United Kingdom. Contribution: Paper Presentation Title of Paper: 'No Harm, No Foul? BIID & the Metaphysics of Harm in GBH' Event: Beauty, Bioethics, and the Body Workshop; 4th October 2019; Manchester: United Kingdom. Contribution: Paper Presentation Title of Paper: 'A Leg to Stand On? Theories of Health, Normality, & Body Integrity Identity Disorder' Event: 33rd European Conference on Philosophy of Medicine and Health Care; 9th August 2019; Oslo: Norway. Contribution: Paper Presentation Title of Paper: 'The (Un)Desirability of Difference: Theories of Health & Body Integrity Identity Disorder' Event: 4S New Orleans: Innovations, Interruptions, Regenerations; 7th September 2020; New Orleans: USA. Contribution: Paper Presentation Title of Paper: 'A Leg Up? Neuroprosthetics, Elective Amputations, and Body Integrity Identity Disorder' Event: Visiting Speaker Symposium; 18th June 2020; The Hastings Center, USA. Contribution: Paper Presentation Title of Paper: 'No Harm, No Foul? Body Integrity Identity Disorder and the Metaphysics of Harm in GBH'
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Event: Socio-Legal Studies Association Annual Conference; 7th April 2020; Leeds: United Kingdom. Contribution: Paper Presentation Title of Paper: No Harm, No Foul? Body Integrity Identity Disorder and the Metaphysics of GBH' Event: CSEP Senior Seminar Series; 5th December 2020; Manchester: United Kingdom. Contribution: Response Paper Title of Paper: What Sorts of Beings Matter? A Nihilistic Response Paper to the Problem of Novel Beings' Event: Postgraduate Bioethics Conference; 24th July 2020; London: United Kingdom. Contribution: Paper Presentation Title of Paper: 'Understanding Moral Bioenhancement through Epidemiological Models' Event: Human-Technology Relations: Postphenomenology and Philosophy of Technology; 11th July 2020; Enschede: The Netherlands. Contribution: Paper Presentation Title of Paper: 'Can I Amputate My Own Leg? The Ethics of Body Integrity Identity Disorder & Neuroprosthetics' Event: Institute of Medical Ethics Summer Conference; 19th June 2020; Oxford, United Kingdom. Contribution: Paper Presentation Title of Paper: 'A Leg Up: The Impact of Neuroprosthetics on Healthy Limb Amputation in BIID Cases'
DESTINATION
Since November 2nd, 2020, I have been working as a Teaching Associate in bioethics and jurisprudence at the University of Manchester’s Department of Law.
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TABLE OF STATUTES
Buggery Act 1533 Coronavirus Act 2020 Criminal Justice Act 1988 Disability Discrimination Act 1995 Female Genital Mutilation Act 2003 Human Tissue Act 2004 Local Government (Miscellaneous Provisions) Act 1982 Malicious Shooting or Stabbing Act 1803 Medical Act 1983 Mental Capacity Act 2005 Offences Against the Person Act 1861 Prohibition of Female Circumcision Act 1985 Prohibition of Female Genital Mutilation (Scotland) Act 2005
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TABLE OF CASES
Attorney General's Reference (No.6 of 1980) [1981] QB 715 (Court of Appeal (Criminal Division) Buck v. Bell 247 US 200; 47 S Ct 584; 71 L Ed 1000; 1927 US (Supreme Court of the United States) Collins v. Wilcock [1984] 1 W.L.R 1172 Director of Public Prosecutions v. Smith [1961] A.C. 290 F v. West Yorkshire Health Authority [1989] 1 All ER 545 JC (A Minor) v. Eisenhower [1984] Q.B. 331 Montgomery v. Lanarkshire Health Board [2015] UKSC 11 Moriarty v. Brookes [1834] EWHC 1879 (Admin) People v. Brown [2001] 91 Cal App 4th 256 (Cal: Court of Appeal, 4th Appellate Dist., 1st Div.) R (on the Application of Burke) v. General Medical Council [2004] EWHC 1879 Re B and G (Children) (No. 2) [2015] EWFC 3 Re C [1994] 1 WLR 290; [1994] 1 All ER 819 Re T (Adult: Refusal of Medical Treatment) [1992] EWCA Civ 18 R v. Brown [1994] 1 AC 212 (House of Lords) R v. Brown and Stratton [1998] Crim LR 485 R v. BM [2018] EWCA Crim 560 (Court of Appeal) R v. Golding [2014] EWCA Crim 889 R v. Ireland and Burstow [1997] AC 147 R v. Wilson [1996] 4 LRC 747 (Court of Appeal)
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“If it is true that the human body is in one sense a product of social activity, it is not absurd to assume that the constancy of certain traits, revealed by an average, depends on the conscious or unconscious fidelity to certain norms of life. Consequentially, in the human species, statistical frequency expresses not only vital but also social normativity.”
– Georges Canguilhem, The Normal and the Pathological, p.160.
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PART I INTRODUCTION
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CHAPTER I
THE QUESTION
Impairments such as deafness, blindness, paraplegia, and cognitive dysfunction have, for the longest time and across vast swaths of global civilisation, been characterised as intrinsically harmful.1 To tackle these harms, individuals and institutions have traditionally sought to negate or eliminate these states. The methods used to achieve this goal, which have changed over time in conjunction with the causal explanations for such impairments, range from the supernatural like exorcism2 and alchemy,3 through the eugenic social programmes in the 19th and 20th centuries,4 up to contemporary biomedical interventions such as pre-implantation genetic diagnosis.5 All the while, through the employment of such rectifying and preventative paradigms, prosthetic devices have been used to facilitate independence through biological functioning imitation.6
This individualistic positioning began to be challenged with the emergence and growth of the disability rights movements in the 1960s and onwards with the founding of activist groups like the Union of the Physically Impaired Against Segregation, Disabled in Action, and the Council of Canadians with Disabilities. Such groups, and those activists that support them, argued that the most substantial burden associated with being impaired was not the impairment itself, but rather, the social and physical environments that unjustly
1 Antiquity abounds with examples of societies and civilisations in which disabled children were left to die through exposure, the most famous example being in the Spartan society. A practice that was often followed in the wider ancient Grecian world, as well as in the Roman Empire. However, this abandonment of disabled children was not ubiquitous. In ancient Egypt, physical disabilities were not only considered to be traits conferred to individuals by the gods, but several of the gods themselves had impairments, such as the dwarf god Bes (Heba Mahran and Samar Mostafa Kamal, (2016) 'Physical Disability in Old Kingdom Tomb Scenes', Athens Journal of History, 2(3), pp.169-192. 2 Judith S. Neaman, (1976), Suggestion of the Devil: Insanity in the Middle Ages and the Twentieth Century, 1st edn. (New York: Octagon Books). 3 Jeffrey Burton Russell, (2007), A New History of Witchcraft: Sorcerers, Heretics & Pagans, 2nd edn. (New York: Thames & Hudson)., p.45. 4 Walter E. Fernald, (1912) 'The Burden of the Feeble-Mindedness', The Boston Medical and Surgical Journal, 166(25), pp.911-915; Garland Allen, (1997) 'The Social and Economic Origins of Genetic Determinism: A Case History of the American Eugenics Movement, 1900–1940 and Its Lessons for Today', Genetica, 99, pp.77-88. 5 Thomas S. Petersen, (2005) 'Just Diagnosis? Preimplantation Genetic Diagnosis and Injustices to Disabled People', Journal of Medical Ethics, 31(4), pp.231-234. 6 John Kirkup, (2007), A History of Limb Amputation, 1st edn. (London: Springer London)., ch. 13. 17 discriminate against those that embody non-conforming body types and cognitive structures.7 Being impaired is merely to have a difference from another person, much in the same way that there are differences between individuals who are considered 'healthy'.
This counter-narrative is not without its critics, who claim this view leads to unacceptable and morally repugnant implications. Guy Kahane and Julian Savulescu suggest that, according to this view, "it wouldn't be wrong to cause a non-disabled person to become disabled, or to fail to prevent or remove disability when this is possible."8 Are they right? Is it unacceptable, morally repugnant even, to cause a non-disabled person to become disabled? More so, is it unethical to confer on someone a disability at their very request? It is this latter question that is the focus of this thesis, and which surgeon Robert Smith found himself facing in the late 1990s.
While working as a surgeon at Falkirk and District Royal Infirmary, Smith was approached by Kevin Wright, a thirty-year-old postgraduate student who had an unusual request;
Wright wanted a unilateral, above-the-knee amputation on his left leg. After consulting two psychiatrists, a psychologist, and a rehabilitation specialist, as well as informing and obtaining clearance from hospital management, Smith carried out the privately funded lower limb amputation while Wright was under general anaesthesia.9 Two years later, a second individual by the name of Hans Schaub also sought Smith's assistance with an elective, lower limb amputation.10 As with Wright, after assessment, Schaub was found to be fully aware of the consequences of amputation and had no significant identifiable psychiatric complaint as diagnosed by both standardised questionnaires and clinical
7 Tom Shakespeare, (2013) 'The Social Model of Disability' in Lennard J. Davis (ed) The Disability Studies Reader, 5th edn, (London: Taylor and Francis). 8 Guy Kahane and Julian Savulescu, (2016) 'Disability and Mere Difference*', Ethics, 126(3), pp.774- 788., pp.774-775. 9 Pennie Taylor, (2000) ''My Left Foot Was Not Part of Me'', The Observer,
Schaub was walking around on crutches.12 Both Wright and Schaub have subsequently reported satisfaction with the outcomes of their operations.13 Even though each of these operations was privately funded, Smith did not receive any financial return for carrying out these operations as the money paid went to cover the cost of hospital fees.14
Despite the therapeutically beneficial outcomes of these surgeries, when news broke in the media in 2000 of the procedures,15 the negative publicity it generated led to Smith's hospital banning any further such operations.16 Smith did plan to carry out a third amputation, this time at King’s Park Hospital in Stirling.17 However, this never occurred. As of 2000, Smith has been unable to carry out any further surgeries of this nature as no UK hospital is prepared to allow such procedures to take place, be they privately or publicly funded, for fear of a similar media backlash, as well as the danger of opening themselves up to legal action.
Wright and Schaub are representative of a group known as 'wannabes'; would be amputees.18 Data regarding the prevalence of those who identify as wannabes is scarce.
However, some researchers tentatively claim that their numbers could range in the
11 Robert Smith, (2009) 'Body Integrity Identity Disorder: The Surgeon's Perspective' in S. Oddo (ed) Body Integrity Identity Disorder: Psychological, Neurobiological, Ethical, and Legal Aspects, (Lengerich: Pabst Science Publishers). 12 A. Stirn, A. Thiel and S. Oddo, (2009), Body Integrity Identity Disorder: Psychological, Neurobiological, Ethical, and Legal Aspects, 1st edn. (Lengerich: Pabst Science Publishers). 13 BBC News, ''No Regrets' for Healthy Limb Amputee'. 14 BBC News, (2000) 'Surgeon Defends Amputations', BBC News,
Initially coined by Michael B. First in 2005,20 BIID causes individuals to experience an intense and longstanding desire to have a healthy body part removed, amputated, or impaired. It is a desire that is resistant to traditional forms of psychotherapy and medication management.
The data available suggests that the only potential treatment option for those with BIID may very well be complying with their desire for surgical intervention.21 In the absence of such an operation, those with BIID experience significant distress resulting from the presence of the body part concerned. This anguish often negatively impacts that person's social, professional, and personal adjustment and functioning, causing them considerable suffering because of their embodiment/body-image incongruity.
This suffering is not to be underestimated or trivialised. Numerous case reports exist of individuals who, having been unable to live with the constant distress the unwanted limb presented, felt they needed to take action into their own hands. These individuals took steps to either sever their limb or damaged it to such a degree as to force an amputation to take place. Methods for self-initiated amputations include, but are not limited to, freezing,22
19 Tim Bayne and Neil Levy, (2005) 'Amputees by Choice: Body Integrity Identity Disorder and the Ethics of Amputation', Journal of Applied Philosophy, 22(1), pp.75-86., p.75; Sabine Müller, (2007) 'Amputee Envy', Scientific American Mind, 18(6), pp.60-65. 20 Michael B. First, (2005) 'Desire for Amputation of a Limb: Paraphilia, Psychosis, or a New Type of Identity Disorder', Psychological Medicine, 35(6), pp.919-928. 21 Clare Dyer, (2000) 'Surgeon Amputated Healthy Legs', British Medical Journal, 320(7231), pp.332- 332.; First, 'Desire for Amputation of a Limb: Paraphilia, Psychosis, or a New Type of Identity Disorder'.; Rianne M. Blom, Raoul C. Hennekam and Damiaan Denys, (2012) 'Body Integrity Identity Disorder', PLoS ONE, 7(4), pp.e34702.; Sarah Noll and Erich Kasten, (2014) 'Body Integrity Identity Disorder (BIID): How Satisfied Are Successful Wannabes', Psychology and Behavioural Sciences, 3(6), pp.222-232. 22 Rianne M. Blom et al., (2016) 'The Desire for Amputation or Paralyzation: Evidence for Structural Brain Anomalies in Body Integrity Identity Disorder (BIID)', PLoS ONE, 11(11), pp.e0165789; Bertrand D. Berger et al., (2005) 'Nonpsychotic, Nonparaphilic Self-Amputation and the Internet', Comprehensive Psychiatry, 46(5), pp.380-383. 20 shotgun blasts,23 chainsaws,24 and applying a tourniquet to cut off blood flow.25 One individual, unable to secure an elective amputation by more traditional means, died after travelling to Mexico to undergo a healthy limb amputation on the black market. While the amputation itself was successful, the individual in question was found a week later after succumbing to gangrene.26 As such, the stakes at play regarding this topic are high, and the consequences of ignoring such debate can be fatal.
As is to be expected with this condition, and arguably any procedure which entails the removal of healthy body tissue, the ethical considerations surrounding the practice of healthy limb amputations in cases of BIID are hotly contested. This contention is illustrated not just by the public outcry in 2000 at the Smith operations – an outcry that caused so many to call for an enquiry that the Scottish government issued a direct response27 – but also by the arguments replying to the idea of healthy limb amputation as a therapeutic measure.
Responding to the operations, Arthur Caplan stated that, "[i]t's absolute, utter lunacy to go along with a request to maim somebody."28 Such a perspective on healthy limb amputation is shared by other critics, including Sabine Müller,29 Randy Dotinga,30 Wesley J. Smith,31
Richard Bruno,32 as well as Josephine Johnston and Carl Elliot.33 For these academics, harm is
23 First, 'Desire for Amputation of a Limb: Paraphilia, Psychosis, or a New Type of Identity Disorder'. 24 Bayne and Levy, 'Amputees by Choice: Body Integrity Identity Disorder and the Ethics of Amputation'. 25 Melita J. Giummarra et al., (2011) 'Body Integrity Identity Disorder: Deranged Body Processing, Right Fronto-Parietal Dysfunction, and Phenomenological Experience of Body Incongruity', Neuropsychology Review, 21(4), pp.320-333. 26 See: People v. Brown [2001] 91 Cal App 4th 256. This will be discussed in more detail in §.3.6. 27 BBC News, 'Surgeon Defends Amputations'. 28 Randy Dotinga, (2000) 'Out on a Limb', Salon,
With the vast scope of discussion regarding the appropriateness, and even permissibility, of healthy limb amputation in cases of BIID being open for discussion, it should be noted that the questions I answer in this thesis are, at least at a cursory glance, relatively simple:
i. Is the amputation of healthy limbs as a therapeutic measure ethical?
And if so…
ii. Is it in keeping with the purpose of medical practice? iii. What is the legal standing of such surgeries?
The articles that comprise this thesis address these broad questions in a variety of ways and from diverse yet interlinked approaches. Before delving into the articles, Part I provides some necessary background, foundation, and contextual information. I will also give an account of why I have chosen to address certain aspects of these questions in the way I have, and equally importantly, why I have omitted other arguably relevant questions and approaches.
In Chapter Two, I give a fuller account of the phenomenon of BIID, looking at the history of the condition, its characteristic features, and attempts to explain its pathogenic origins.
Chapter Three addresses several foundational questions regarding the desire for healthy limb amputation. Here I outline the arguments in the literature suggesting how such a desire should be understood from an ethical and legal standpoint, as well as whether the amputation of healthy limbs is acceptable or not. This chapter also identifies the key questions explored in the rest of this thesis and gives an account of such an approach’s value. Chapter Four introduces the essential foundations, commitments, and academic approaches that I have employed to address these questions. Part II, which consists of
Chapters Five, Six, Seven, and Eight, is comprised of the four peer-review journal articles I have written for this thesis. Finally, in Part III, in Chapter Nine, I provide an overarching conclusion to the entire thesis, drawing on the conclusions of the four articles to explore their combined impact.
22
The impact this thesis will have on the discourse surrounding the permissibility of healthy limb amputation should not be understated. The work that follows interrogates several of the foundational assumptions upon which both proponents and opponents of the practice of therapeutic, healthy limb amputation build their arguments, and subsequently, their recommendations that seek to influence academic discourse, clinical practice, and legal guidance. Through deliberative philosophical and jurisprudential reasoning, this thesis disrupts the ableist narrative that underpins the very aversion to the clinical practice of healthy limb amputation; an aversion which costs those with BIID time, productivity, health, happiness, and in the most extreme cases, even their lives.
23
CHAPTER II
BODY INTEGRITY IDENTITY DISORDER: AN OVERVIEW
In 1977, John Money, of the Psychohormonal Research Unit at Johns Hopkins Hospital,
Baltimore, published an article with Russel Jobaris and Gregg Furth, titled Apotemnophilia:
Two Cases of Self-Demand Amputation as a Paraphilia.34 They describe two cases of men who had come to the unit seeking a voluntary limb amputation. There was nothing medically wrong with these limbs. However, each man demonstrated "an obsessive desire to have one leg surgically amputated above the knee."35 Money and his colleagues believed this desire to have a sexual motivation at its core. They stated, "in accordance with the tradition whereby a philia is assigned its appropriate Greek prefix, the name for this syndrome is apotemnophilia, literally meaning ‘amputation love.’"36 While there is a fetish related to the desire to become amputated and towards the amputee body,37 not all those desiring a healthy limb amputation are paraphilic;38 a sexual aspect is not always the primary motivation for their desire. Thus, apotemnophilia has been considered by most to an inaccurate moniker for the condition.
The term BIID was first proposed as a label for the condition, alongside several other suggestions,39 at the first academic conference focusing specifically on the phenomenon, held at Columbia University in 2002.40 Attendees to this conference reached a consensus on
34 John Money, Russell Jobaris and Gregg Furth, (1977) 'Apotemnophilia: Two Cases of Self‐Demand Amputation as a Paraphilia', Journal of Sex Research, 13(2), pp.115-125. 35 Ibid., p.116. 36 Ibid., p.115. 37 The attraction to those with impairments is called Acrotomophilia. 38 While it is difficult to define and open to criticism, paraphilia can be understood as “any intense and persistent sexual interest other than sexual interest in genital stimulation or preparatory fondling with phenotypically normal, physically mature, consenting human partners. In some circumstances, the criteria ‘intense and persistent’ may be difficult to apply, such as in the assessment of persons who are very old or medically ill and who may not have ‘intense’ sexual interest of any kind. In such circumstances, the term paraphilia may be defined as any sexual interest greater than or equal to normophilic sexual interests.” American Psychiatric Association, (2013), Diagnostic and Statistical Manual of Mental Disorders: DSM-5, 5th edn. (Arlington: American Psychiatric Publishing)., p.685. 39 Suggestions for alternatives titles included Somatic Identity Disorder and Amputee Identification Disorder. 40 Michael B. First, (2009) 'Origin and Evolution of the Concept of Body Integrity Identity Disorder' in Aglaja Stirn, Aylin Thiel and Silvia Oddo (eds), Body Integrity Identity Disorder: Psychological, Neurobiological, Ethical, and Legal Aspects, 1st edn, (Lengerich: Pabst Science Publishers)., p.55. 24 adopting the term BIID. First then employed this term in his 2005 paper Desire for
Amputation of a Limb: Paraphilia, Psychosis, or a new Type of Identity Disorder.41 Since then, BIID has been the most commonly used term to refer to the condition.42 As such, this is the term I employ.
By proposing the term BIID, First aimed to decentralise the paraphilic aspect from the condition as envisioned by Money, Jobaris, and Furth, and invoke a phenomenological comparison to what was then known as Gender Identity Disorder, and is now referred to as
Gender Dysphoria.43 The purpose was to centralise the feeling of being 'out-of-sorts' with one's physical embodiment or on the idea of ‘identity trouble.’44 This co-opting of terminology typically used in discussion regarding Gender Dysphoria has been a regular feature in BIID.45 This is likely because the desire for a healthy limb amputation is so alien to many of us that such common terminology acts as an interpretational device, better allowing us to understand such an unusual phenomenon; we often seem more capable of comprehending the desire to change sex than we do the idea of someone wishing to become impaired.
While not being included in the DSM-5 beyond a single reference as a subsect of Body
Dysmorphic Disorder,46 BIID is codified in the ICD-11, albeit under the title Body Integrity
Dysphoria. According to the ICD-11:
Body Integrity Dysphoria is characterized by an intense and persistent desire to become physically disabled in a significant way (e.g., major limb amputee, paraplegic, blind), with onset by early adolescence accompanied by persistent discomfort, or intense feelings of inappropriateness concerning current non-disabled body configuration. The desire to become
41 First, 'Desire for Amputation of a Limb: Paraphilia, Psychosis, or a New Type of Identity Disorder'. 42 Other terms that have been used to describe the phenomena, the appropriateness of some can be considered dubious at best, include Apotemnophilia, Acrotomophilia, Factitious Disability Disorder, Body Dysmorphic Disorder, Amputee Identity Disorder, Body Integrity Dysphoria, and Xenomelia. 43 Since the release of the DSM-V, the diagnostic label of Gender Dysphoria is now the accepted name of the condition. 44 Niall Richardson, (2010), Transgressive Bodies: Representations in Film and Popular Culture (Farnham: Ashgate)., p.201-203. 45 Susan Stryker and Nikki Sullivan, (2016) 'King’s Member, Queen’s Body: Transsexual Surgery, Self- Demand Amputation and the Somatechnics of Sovereign Power' in Nikki Sullivan and Samantha Murray (eds), Somatechnics: Queering the Technologisation of Bodies, (London: Routledge). 46 American Psychiatric Association, Diagnostic and Statistical Manual of Mental Disorders: DSM-5., p.458. 25
physically disabled results in harmful consequences, as manifested by either the preoccupation with the desire (including time spent pretending to be disabled) significantly interfering with productivity, with leisure activities, or with social functioning (e.g., person is unwilling to have a close relationships because it would make it difficult to pretend) or by attempts to actually become disabled have resulted in the person putting his or her health or life in significant jeopardy. The disturbance is not better accounted for by another mental, behavioural or neurodevelopmental disorder, by a Disease of the Nervous System or by another medical condition, or by Malingering.47
Despite this codification in the ICD-11, BIID is still, at the time of writing, the most used term in the academic literature and media reports.
BIID is typically characterised by a mismatch between an individual's physical embodiment and their self-perceived bodily image.48 It takes the form of an intense, unresolved, and longstanding 'need' to become impaired. The desire is not always consistent, and it is not uncommon for there to be peaks and troughs in the level of desire for amputation. At points, the desire to achieve an amputation can be all-consuming, and other times it can be manageable, but it never fully resolves. This desire is resistant to traditional psychotherapy and medical management, other than acquiescing to the requests for body modification.
While the desire for alteration most commonly takes the form of a wish for a lower limb amputation, the condition can manifest in other ways with individuals wishing to amputate upper limbs,49 impair or remove senses such as hearing50 or sight,51 or to acquire paralysis.52
A point of particular note is that prosthetic use is not uncommon for those who have been
47 World Health Organization, (2018), International Classification of Diseases for Mortality and Morbidity Statistics, 11th edn. (Geneva: World Health Organization)., code 6c21. 48 Blom, Hennekam and Denys, 'Body Integrity Identity Disorder'. 49 Samuel I. Kohrman et al., (2019) 'Self-Inflicted Limb Amputation: A Case of Non-Paraphilic, Non- Psychotic Xenomelia', Psychosomatics, 61(1), pp.70-75. 50 David Veale, (2006) 'A Compelling Desire for Deafness', The Journal of Deaf Studies and Deaf Education, 11(3), pp.369-372. 51 Katja Gutschke, Aglaja Stirn and Erich Kasten, (2017) 'An Overwhelming Desire to Be Blind: Similarities and Differences between Body Integrity Identity Disorder and the Wish for Blindness', Case Reports in Ophthalmology, 8(1), pp.124-136; Alexandra Sims, (2015) 'Woman 'Arranges for Psychologist to Pour Drain Cleaner in Her Eyes after Fantasising About Being Blind'',
Reports of BIID are not geographically restricted but are found globally. While most respondents to First's study resided in the United States, they also had respondents from
Canada, the United Kingdom, The Netherlands, Sweden, Belgium, and Australia.54 Similar spatial dispersal has been observed in other studies.55 Cases of BIID are not found just in
'western' countries. A systematic literature review of databases containing Japanese and
Chinese research, published in each's respective language, found multiple case reports of the condition.56 As indicated in several research studies, the condition appears to be more prevalent in men than in women.57 Additionally, it appears to have a typically early-onset, with the majority of individuals reporting the desire beginning to present itself in mid-to- late childhood.58 The onset for the desire can, in rare cases, be even earlier than this.59
53 Kayla Dawn Stone et al., (2019) 'Mental Rotation of Feet in Individuals with Body Integrity Identity Disorder, Lower-Limb Amputees, and Normally-Limbed Controls', PLoS ONE, 14(8), pp.e0221105; E.D. Sorene, C. Heras-Palou and F.D. Burke, (2006) 'Self-Amputation of a Healthy Hand: A Case of Body Integrity Identity Disorder', Journal of Hand Surgery, 31(6), pp.593-595; Alicia Johnson, J., Sook- Lei Liew and Lisa Aziz-Zadeh, (2011) 'Demographics, Learning and Imitation, and Body Schema in Body Integrity Identity Disorder', Indiana University Undergraduate Journal of Cognitive Science, 6, pp.8- 11. 54 First, 'Desire for Amputation of a Limb: Paraphilia, Psychosis, or a New Type of Identity Disorder'., p.921. 55 Olaf Blanke et al., (2009) 'Preliminary Evidence for a Fronto‐Parietal Dysfunction in Able‐Bodied Participants with a Desire for Limb Amputation', Journal of Neuropsychology, 3(2), pp.181-200; Stone et al., 'Mental Rotation of Feet in Individuals with Body Integrity Identity Disorder, Lower-Limb Amputees, and Normally-Limbed Controls'. 56 Rianne M. Blom et al., (2016) 'Body Integrity Identity Disorder Crosses Culture: Case Reports in the Japanese and Chinese Literature', Neuropsychiatric Disease and Treatment, 12, pp.1419-1423. 57 First, 'Desire for Amputation of a Limb: Paraphilia, Psychosis, or a New Type of Identity Disorder'; Blom, Hennekam and Denys, 'Body Integrity Identity Disorder'; Noll and Kasten, 'Body Integrity Identity Disorder (BIID): How Satisfied Are Successful Wannabes'; Rami Bou Khalil and Sami Richa, (2012) 'Apotemnophilia or Body Integrity Identity Disorder', The International Journal of Lower Extremity Wounds, 11(4), pp.313-319. 58 Johnson, Liew and Aziz-Zadeh, 'Demographics, Learning and Imitation, and Body Schema in Body Integrity Identity Disorder'; Emma Barrow and Femi Oyebode, (2019) 'Body Integrity Identity Disorder: Clinical Features and Ethical Dimensions', BJPsych Advances, 25(3), pp.187-195; Catharina Obernolte, Thomas Schnell and Erich Kasten, (2015) 'The Role of Specific Experiences in Childhood and Youth in the Development of Body Integrity Identity Disorder (BIID)', American Journal of Applied Psychology, 4(1), pp.1-8. 59 Przemysław Nowakowski and Anna Karczmarczyk, (2016) 'The Rest Is Not Me… an Attempt to Explain Xenomelia – Neurodevelopmental Hypothesis', Postępy Psychiatrii i Neurologii, 25(3), pp.196- 208; Mihir A Upadhyaya and Henry A Nasrallah, (2018) 'Xenomelia: Profile of a Man with Intense 27
Many wannabes partake in the practice of pretending to have their desired impairment. This includes leg-binding and using crutches to get around. Those that do this are typically identified as 'pretenders.’60 This behaviour has been identified in large-scale studies, smaller case reports, as well as anecdotal evidence.61 Pretending can be done in the privacy of that person's home, or if they are more confident, they may pretend while out in public, even travelling for hours to minimise the risk of being seen by someone they know while pretending in public.62 Such behaviour enables a form of partial release from the distress associated with the presence of the limb. By pretending, these individuals can live out their desire of being impaired, albeit in a superficial way.63 This short-term relief is precisely that though as, while such behaviours can provide some initial relief from suffering, it is not a long-term solution. Indeed, it may even fortify the desire to transition due to the positive emotions that the behaviour elicits.64
Connected to this point of pretending comes the reaction from the disability activist community. While it is impossible to categorically group the views of such a diverse population into a single stance, there has been a general theme of reluctance to engage with those who have BIID, as well as the broader transableism movement. This unwillingness extends to the point that “…the disability community has been hostile to embracing transabled individuals.”65 While there is likely a multitude of factors that lead to this adversarial stance, Alexandre Baril identifies three central justifications used by disability rights groups: (i) those with BIID pose a threat resultant from the inauthenticity of their disability; (ii) those with BIID seek to ‘illegitimately’ secure already scarce resources; and,
Desire to Amputate a Healthy Limb', Current Psychiatry, 17(8), pp.34-43; Blom, Hennekam and Denys, 'Body Integrity Identity Disorder'. 60 Bruno, 'Devotees, Pretenders and Wannabes: Two Cases of Factitious Disability Disorder'. 61 Blom, Hennekam and Denys, 'Body Integrity Identity Disorder'. 62 Carolina Mora, (2016) 'Devotees, Wannabes Y Pretenders: Parafilias Vinculadas a La Discapacidad', Revista Interamericana de Psicologia/Interamerican Journal of Psychology, 50(3), pp.358-370., p.13. 63 This behaviour, while not of specific interest to this thesis, is interesting as it further strengthens the idea of drawing parallels between BIID and Gender Dysmorphia as a common trait amongst the latter is the simulation of the desired physical construction via cross-dressing. 64 Jelena Helmer and Erich Kasten, (2015) 'Body Integrity Identity Disorder – a Systematic Record of the Strategies to Reduce the Strain', Psychology and Behavioral Sciences, 4(4), pp.139-146. 65 Bethany Stevens, (2011) 'Interrogating Transability: A Catalyst to View Disability as Body Art', Disability Studies Quarterly
(iii) those in the transableism community internalise a disrespected for ‘genuinely’ disabled people.66 Bethany Stevens has also identified a similar theme of reluctance and dismissal.67
Inextricably linked to the debate surrounding what constitutes an ethically viable treatment option for those seeking a healthy limb amputation because of BIID comes questions regarding what factors lead someone to develop the condition in the first place. As asserted by Anna Sedda and Gabriella Bottini, “[u]nderstanding whether the desire to amputate a healthy limb is of psychological/psychiatric or neurological origin is a determinant of guiding development of possible treatments, especially considering that most of the approaches that have been tried until now have proven ineffective.”68 Etiological explanations can indeed, for the most part, be divided into psychiatric/psychological and neurological accounts.
The psychiatric/psychological explanations for the desire for healthy limb amputation in cases of BIID have two central hypotheses: either the desire is the result of sexual compulsion and consequently belongs to the paraphilic order of conditions, as proposed by
Money;69 or it results from an identity disturbance which would place it in the identity disorder category of conditions, as suggested by First.70 This approach to the problem has commonly been explored via one-on-one or small-scale interview,71 or, more recently, with qualitative and quantitative surveys.72
Neurological explanations argue that what we term BIID is not an identity disorder per se but a physical abnormality in the brain or nervous system. As such, it is this abnormality
66 Alexandre Baril, (2015) '‘How Dare You Pretend to Be Disabled?’ the Discounting of Transabled People and Their Claims in Disability Movements and Studies', Disability & Society, 30(5), pp.689-703. 67 Stevens, 'Interrogating Transability: A Catalyst to View Disability as Body Art'. 68 Anna Sedda and Gabriella Bottini, (2014) 'Apotemnophilia, Body Integrity Identity Disorder or Xenomelia? Psychiatric and Neurologic Etiologies Face Each Other', Neuropsychiatric Disease and Treatment, 10, pp.1255-1265., p.1256. 69 Money, Jobaris and Furth, 'Apotemnophilia: Two Cases of Self‐Demand Amputation as a Paraphilia'. 70 First, 'Desire for Amputation of a Limb: Paraphilia, Psychosis, or a New Type of Identity Disorder'. 71 Walter Everaerd, (1983) 'A Case of Apotemnophilia: A Handicap as Sexual Preference', American Journal of Psychotherapy, 37(2), pp.285-293; Bruno, 'Devotees, Pretenders and Wannabes: Two Cases of Factitious Disability Disorder'. 72 Helmer and Kasten, 'Body Integrity Identity Disorder – a Systematic Record of the Strategies to Reduce the Strain'; Blom, Hennekam and Denys, 'Body Integrity Identity Disorder'; Noll and Kasten, 'Body Integrity Identity Disorder (BIID): How Satisfied Are Successful Wannabes'. 29 that results in the desire for healthy limb amputation. Studies that have aimed to test this hypothesis have utilised several different methodologies. Techniques used range from imaging approaches such as fMRI,73 MEG,74 MRI,75 to physiological experimentation, including measuring skin conductive response,76 caloric vestibular stimulation,77 visuo- tactile interaction tasks,78 a self-conducted body size evaluation,79 and psychophysics.80
Several of these studies report a difference in the construction of the neural networks responsible for a coherent body representation between those with BIID and controls.81
There then exists a smaller body of work that aims to explore the cause of BIID through a combination of psychiatric/psychological and neurological accounts, as well as bringing into play sociological and anthropological influences.82 Many of these approaches draw upon the
73 Milenna T. van Dijk et al., (2013) 'Neural Basis of Limb Ownership in Individuals with Body Integrity Identity Disorder', PLoS ONE, 8(8), pp.e72212; Jürgen Hänggi et al., (2017) 'Structural and Functional Hyperconnectivity within the Sensorimotor System in Xenomelia', Brain and Behavior, 7(3), pp.1-17; Gianluca Saetta et al., (2020) 'Neural Correlates of Body Integrity Dysphoria', Current Biology, 30(11), pp.2191-2195.e2193. 74 Paul D. McGeoch et al., (2011) 'Xenomelia: A New Right Parietal Lobe Syndrome', Journal of Neurology, Neurosurgery & Psychiatry, 82(12), pp.1314-1319. 75 Blom et al., 'The Desire for Amputation or Paralyzation: Evidence for Structural Brain Anomalies in Body Integrity Identity Disorder (BIID)'; Leonie Maria Hilti et al., (2013) 'The Desire for Healthy Limb Amputation: Structural Brain Correlates and Clinical Features of Xenomelia', Brain, 136(1), pp.318- 329. 76 David Brang, Paul D. McGeoch and Vilayanur S. Ramachandran, (2008) 'Apotemnophilia: A Neurological Disorder', NeuroReport, 19(13), pp.1305-1306; Atsushi Aoyama et al., (2012) 'Impaired Spatial-Temporal Integration of Touch in Xenomelia (Body Integrity Identity Disorder)', Spatial Cognition & Computation, 12(2-3), pp.96-110. 77 Bigna Lenggenhager et al., (2014) 'Vestibular Stimulation Does Not Diminish the Desire for Amputation', Cortex, 54, pp.210-212. 78 Kayla Dawn Stone et al., (2020) 'Lower Limb Peripersonal Space and the Desire to Amputate a Leg', Psychological Research, pp.1-13. 79 Kayla Dawn Stone et al., (2020) 'An Investigation of Lower Limb Representations Underlying Vision, Touch, and Proprioception in Body Integrity Identity Disorder', Frontiers in Psychiatry, 11(15), 80 Aoyama et al., 'Impaired Spatial-Temporal Integration of Touch in Xenomelia (Body Integrity Identity Disorder)'. 81 Blom et al., 'The Desire for Amputation or Paralyzation: Evidence for Structural Brain Anomalies in Body Integrity Identity Disorder (BIID)'; Hänggi et al., 'Structural and Functional Hyperconnectivity within the Sensorimotor System in Xenomelia'; Silvia Oddo-Sommerfeld et al., (2018) 'Brain Activity Elicited by Viewing Pictures of the Own Virtually Amputated Body Predicts Xenomelia', Neuropsychologia, 108, pp.135-146. 82 Nowakowski and Karczmarczyk, 'The Rest Is Not Me… an Attempt to Explain Xenomelia – Neurodevelopmental Hypothesis'.; Peter Brugger, Bigna Lenggenhager and Melita J. Giummarra, (2013) 'Xenomelia: A Social Neuroscience View of Altered Bodily Self-Consciousness', Frontiers in Psychology, 4, pp.204; Peter Brugger et al., (2016) 'Limb Amputation and Other Disability Desires as a Medical Condition', The Lancet Psychiatry, 3(12), pp.1176-1186; Peter Brugger et al., (2018) 'Grey Matter 30 work, and personal account, of neuroscientist Oliver Sacks. After experiencing a severe leg injury while hiking, Sacks developed an embodiment disorder akin to BIID where he perceived his injured limb as not being part of his body,83 describing it as alien or comprised of chalk and being unaware of its positioning with the rest of his body. His development of this disorder, his confrontation with his doctors over their dismissal of his experiences, and his eventual recovery were documented in A Leg to Stand On.84
While the persistent desire for the amputation of a healthy limb is a core symptom of BIID, it is not only in this condition in which such a desire can manifest itself. There are several psychiatric conditions that may present with the desire for self-injury, and this includes amputation. Such conditions include extreme forms of amputee related paraphilias, Body
Dysmorphic Disorder, Schizophrenia, Alien Hand Syndrome, Complex Regional Pain
Syndrome, and many others.85 It is important to note that this thesis relates exclusively to questions regarding the elective amputation in cases of BIID, and not to other conditions involving delusions or psychoses, nor to those conditions that have less drastic yet effective treatment options available to them. The reasoning for this restriction in scope comes from a crucial differentiating factor that sets BIID apart from these other conditions; that being one's ability to provide full and informed consent to medical interventions relating to the targeted body part. This aspect is something that will be explored further in Chapter Three. Nor will I be concerned with those individuals who impair or injure themselves as a means of obtaining financial benefit or compensation. A recent example being Julia Adlesic who, in
2020, was found guilty of attempted insurance fraud, alongside her partner and father, for deliberately severing her hand.86
or Social Matters? Causal Attributions in the Era of Biological Psychiatry', European Psychiatry, 52, pp.45-46.; Jenny L. Davis, (2012) 'Narrative Construction of a Ruptured Self: Stories of Transability on Transabled.Org', Sociological Perspectives, 55(2), pp.319-340. 83 Sacks developed Somatoparaphrenia, a condition which causes the individual to detach their identity from that of the limb, denying ownership of the body part. 84 Oliver W. Sacks, (1991), A Leg to Stand On, Revised edn. (London: Picador). 85 Giummarra et al., 'Body Integrity Identity Disorder: Deranged Body Processing, Right Fronto- Parietal Dysfunction, and Phenomenological Experience of Body Incongruity'. 86 Russell Hope, (2020) 'Julija Adlesic: Woman Who Deliberately Cut Off Own Hand in Insurance Scam Jailed for Two Years', Sky News,
2.1 BODY INTEGRITY IDENTITY DISORDER AND GENDER DYSPHORIA
As has been referenced, the conceptual relationship between BIID and Gender Dysphoria is a close one. The name BIID was given as a means of eliciting a comparison with what was then known as Gender Identity Disorder. The purpose of this elicitation being to provide a method of conceptual translation. By suggesting that we think of transableism in a similar method as we would with Gender Dysphoria, First sought to use the more accepted condition as a means of bridging the gap between the bizarre and the typical; that is, between the desires of those few seeking disabilities and the perception of the majority who avoid them.
This conceptual comparison has been followed by an investigative one. Several studies and papers have sought to theorise the analogy between the conditions further, as well as pinpoint their quantifiable similarities and differences.87 These clinical comparisons have been complimented by philosophical and sociological ones that have explored the relationship between the two conditions, not with a lens of pathologisation, but rather one of critical analysis.88 These subsequent arguments have sought to persuade sceptics that, in the words of Peter Brian Barry, “if gender reassignment surgery (GRS) is an ethically permissible therapy in cases of profound GID [Gender Identity Disorder], parity of
for insurance purposes, look to the town of Vernon, Florida, which, due to the practice’s propensity, came to be known in the 1960s and 1970s as ‘nub city.’ See: Errol Morris, (1982), Vernon, Florida (Errol Morris Films); Barbara Davidson, (12th March 1972) '‘Nub City,’ and Other Stories of an Insurance Investigator' The New York Times (New York) pp.36
However, despite comparisons between the two conditions often being invoked, this thesis will not dwell upon the relationship between BIID and Gender Dysphoria. That is not to say that an exploration of this link would be pointless, as that is far from the case. Instead, others have already explored this topic in detail, and this thesis seeks to diverge from the established trend. My aim with this work is not to re-tread previous discussions but to examine the ethical and legal viability of healthy limb amputation from a novel angle. As such, because this thesis is more concerned with disrupting the presumed natural correlation between statistical commonality and health/non-disability, the potential relationship between BIID and Gender Dysphoria will not be considered here.
89 Peter Brian Barry, (2012) 'The Ethics of Voluntary Amputation', Public Affairs Quarterly, 26(1), pp.1- 18., p.12 33
CHAPTER III
PHILOSOPHICAL AND LEGAL BACKGROUND
3.1 INTRODUCTION
As described in Chapter One, in this thesis, I focus on the question of whether elective amputation can be considered an ethically and legally viable treatment option for those individuals suffering from BIID. This chapter will provide some background to this question by exploring a portion of the existing philosophical and legal debate around the potential practice. The rationale of this is to provide a solid grounding for the more specific discussions that will take place later in the thesis; discussions that are primarily grounded in a philosophical and bioethical approach.
In examining the philosophical arguments regarding therapeutic, healthy limb amputation, it is often easiest to separate the debates into two categories: the deontological, which concerns issues linked to duties and rights; and the consequentialist, which is concerned with the results of either carrying out or refusing to provide a healthy limb amputation.
However, while such approaches often generate interesting analyses regarding the critical arguments given in favour and against such procedures, what they lack is a capacity to move beyond their rigid, big picture, 'top-down' philosophical models. Consequentially, they are unable to engage with competing, counterintuitive, and in this case, controversial values and ideals fully.
For the purposes of this chapter, then, topics will be grouped into thematic categories. This grouping will allow for a combination of viewpoints and perspectives to be illustrated, as well as better exposing conceptual inconsistencies. This approach contrasts with much of the existing body of literature, which often deals with questions relating to self-determination, autonomy, and the concept of disability and harm, separately.
First, I examine the questions which are often the focal point of the BIID treatment debate, that being the capacity for autonomy and autonomous decision making by those with BIID.
Following this, I turn to discussions related to the potential for beneficial and harmful consequences of elective amputation. This discussion will then be followed by a brief account of the social justice concerns. Finally, the chapter concludes with an exploration of
34 the legal landscape concerning elective amputation, paying particular attention to the potential legal actions against a surgeon for performing such an operation.90
3.2 AUTONOMY AND THE CAPACITY FOR CONSENT
It would seem prudent to start this discussion with the subject which is most often found at the centre of debates concerning the topic of healthy limb amputation in cases of BIID; that being autonomy. More specifically, the question of whether those seeking a healthy limb amputation as a result of BIID are capable of making a fully autonomous decision regarding their desire for an impairment, or, if by having BIID, they are unable to exercise a level of autonomy typically expected of those seeking medical interventions and, consequentially, are unable to give consent for an amputation.
The answer to this question is undoubtedly going to have an impact on the permissibility of healthy limb amputation in cases of BIID.91 This is because "the principle of autonomy emphasises the independence of individuals against (medical) authorities. It demands from the physicians to respect the autonomy of the patients and to bring it forward."92 As such,
"[t]o fulfil the desire for a bodily harm of a patient with a substantial lack of autonomy is a severe violation of the medical fiduciary duty and of the principle of non-maleficence."93 To conduct a healthy limb amputation on someone unable to provide consent would be a gross ethical violation as well as being, as will be explored later in this chapter, illegal.94
3.2.1 CONTROLLING OR COERCIVE FACTORS
For some, the question of the ethical permissibility of healthy limb amputation, at the request of someone suffering from BIID, is relatively simple. Such critics hold that any
90 The jurisprudential and legal focus of this chapter, and the thesis, will centre on the legal system of England and Wales. A similar argument to the one made in this thesis could be made regarding other jurisdictions. However, to do so fully here would go beyond the scope of this thesis. 91 As summarised by Avi Craimer, “[t]he ethical controversy over the treatment of BIID stems at least in part from the philosophical controversy about whether the desire for amputation can be an important part of the self of the person who holds such a desire, or whether an amputation desire is always better thought of as a coercive and exogenous element of the psyche.” See: (2009) 'The Relevance of Identity in Responding to BIID and the Misuse of Causal Explanation', The American Journal of Bioethics, 9(1), pp.53-55., p.54. 92 Müller, 'Body Integrity Identity Disorder (BIID)—Is the Amputation of Healthy Limbs Ethically Justified?'., p.40. 93 Ibid., p.40. 94 See: §.3.6. 35 individual who would make such a request must be suffering from a severe delusion as this is the only reason someone would express such a desire. They argue that those with BIID are unable to exercise their decision-making capacities without a controlling or coercive influence and, as such, that individual is unable to give free and autonomous consent to such a procedure as the disorder itself has compromised their autonomy. Thus, as one should generally not be subject to medical treatments for which they have not validly consented,95 such significant surgery should not be provided.
For example, when considering autonomy in cases of BIID, Daniel Patrone argues that
"those who have a disorder that causes them to desire to maim and disable their bodies cannot meet this standard of voluntarily accepting the burdens of choice that makes the practice of respecting autonomy acceptable."96 Such a view is reiterated by Benedict Guevin, who writes, “[w]hat ever the origin, a patient making such a request [for a healthy limb amputation] is not capable of making a truly autonomous decision.”97 This stance is often supported by appeals to comparisons with the provision of contentious surgical interventions for those with autonomy inhibiting conditions. Examples include providing sufferers of Anorexia Nervosa with stomach stapling surgery98 or appendectomies for those who mistakenly believe their appendix is cancerous.99
This sceptical view has been challenged by those who concede that while the desire to remove a healthy limb may seem unconventional, to conclude that it is a symptom of a diseased or delusional mind is untenable as, unlike in cases of anorexia and other conditions which can have a delusion as a central characteristic, those with BIID do not hold a false
95 Alasdair Maclean, (2009), Autonomy, Informed Consent and Medical Law: A Relational Challenge, 1st edn. (Cambridge: Cambridge University Press). 96 Dan Patrone, (2009) 'Disfigured Anatomies and Imperfect Analogies: Body Integrity Identity Disorder and the Supposed Right to Self-Demanded Amputation of Healthy Body Parts', Journal of Medical Ethics, 35(9), pp.541-545., p.545. 97 Benedict Guevin, (2020) 'Examining Body Integrity Identity Disorder through Theological Ethics', The National Catholic Bioethics Quarterly, 20, pp.93-110., p.108. 98 Müller, 'Body Integrity Identity Disorder (BIID)—Is the Amputation of Healthy Limbs Ethically Justified?'., p.40. 99 Smith, 'Should Doctors Amputate Healthy Limbs?'. 36 belief about their body. According to Joel Michael Reynolds, merely believing they must be delusional because of the nature of their desire betrays an ableist mentality.100
This counterargument interrogates, more closely, what a delusion is typically understood as being:
A false belief based on incorrect inference about external reality that is firmly sustained despite what almost everyone else believes and despite what constitutes incontrovertible and obvious proof or evidence to the contrary. The belief is not ordinarily accepted by other members of the person's culture or subculture (i.e., it is not an article of religious faith).101
Returning to Müller’s chosen comparator of Anorexia Nervosa, for example, those with the condition can express a belief that they are overweight despite physical and medical evidence to the contrary.102 Their indicated perception of themselves as being overweight or needing to lose more weight may not be in line with the world as empirically understood, i.e. one may be able to demonstrate through empirical measurements that the individual with anorexia is not overweight by comparing them to their recommended/expected weight.
However, a person with BIID does not hold a belief that contradicts quantifiable proof or evidence. They acknowledge that their body, and the limb that is the target of their desire for amputation, is healthy. Their claim is that the limb itself does not fall in line with their self-perceived body-image. This claim is not something that can be disproven according to empirical and medical research or tests; it is the self-evaluative account of that individual.
Furthermore, many of those with BIID are aware that their desire is unusual and can empathise with others’ views regarding their condition and the strange nature of their desire.103
100 Joel Michael Reynolds, (2016) 'Toward a Critical Theory of Harm: Ableism, Normativity, and Transability (BIID)', APA Newsletter on Philosophy and Medicine, 16(1), pp.37-45. 101 American Psychiatric Association, Diagnostic and Statistical Manual of Mental Disorders: DSM-5., p.819. 102 Ibid., Criterion C, p.339. 103 Upadhyaya and Nasrallah, 'Xenomelia: Profile of a Man with Intense Desire to Amputate a Healthy Limb'; Anja Grocholewski et al., (2018) 'Mental Images in Body Integrity Identity Disorder (BIID) and in Body Dysmorphic Disorder (BDD): An Exploratory Study', Behaviour Change, 35(3), pp.174-184. 37
Those with BIID suffer because of the mismatch between their physical selves and their body-image,104 not from a false belief.105 The First et al. study found that 79% of subjects had no significant psychiatric symptoms except BIID.106 This lack of significant comorbidity has also been reported in subsequent studies.107
3.2.2 INSIGHT INTO THEIR SITUATION
A further criticism levied against those with BIID, who seek a healthy limb amputation, appeals to the principle that to act autonomously, one must have insight into one's situation and the foreseeable consequences which will result from their decision. Opponents of these operations argue that those with BIID do not, and cannot, know what it is like to be an amputee without first being an amputee. While they may pretend to have an impairment, this is categorically different from actually having an impairment.108 As such, they are unable to give consent as they do not have all the necessary information required to make such a decision.109 This argument has been met with two key criticisms.
First, it is not clear that those wannabes with BIID cannot know what it is like to have an impairment without already possessing one. As discussed, many wannabes will spend extended periods replicating how they wish to be impaired (binding the leg up or using a
104 One’s body-image is “a consciously accessible representation of the general shape and structure of one’s body. The body image is derived from a number of sources, including visual experience, proprioceptive experience, and tactile experience. It structures one’s bodily sensations (aches, pains, tickles, and so on), and forms the basis of one’s beliefs about oneself.” See: Bayne and Levy, 'Amputees by Choice: Body Integrity Identity Disorder and the Ethics of Amputation'., p.76. 105 Amy White, (2014) 'Body Integrity Identity Disorder Beyond Amputation: Consent and Liberty', Health Care Ethics Committee Forum, 26(3), pp.225-236., p.229. 106 First, 'Desire for Amputation of a Limb: Paraphilia, Psychosis, or a New Type of Identity Disorder'., p.925. 107 Blom, Hennekam and Denys, 'Body Integrity Identity Disorder'.; Sedda Oddo et al., (2014) 'Psychological Features of Body Integrity Identity Disorder (BIID): Personality Traits, Interpersonal Aspects, Coping Mechanisms Regarding Stress and Conflicts, Body Perception', Fortschritte der Neurologie-Psychiatrie, 82(5), pp.250-260; van Dijk et al., 'Neural Basis of Limb Ownership in Individuals with Body Integrity Identity Disorder'. 108 This form of reasoning, in which those individuals who seek an impairment are in some way discounted, echoes some concerns from the disabled community regarding the inauthenticity of transabled individuals. See: Alan Santinele Martino and Nicole Andrejek, (2019) 'Normal/Deserving Citizens and the Transabled Other: A Sociological Analysis of Online Commenters Reactions to Transability', Deviant Behavior, 40(12), pp.1574-1586. 109 Bayne and Levy, 'Amputees by Choice: Body Integrity Identity Disorder and the Ethics of Amputation'. 38 wheelchair, for example). In one study, 90% of respondents with BIID stated that they take part in this pretending behaviour.110 Furthermore, as noted by Smith, patients with BIID tend to be "well-informed, appear to have the required mental capacity to make medical decisions and are fully aware of the consequences of their wish to amputate a limb."111 While it is true that the imitation of an impairment is not equivalent to permanently living with one, to say that those with BIID are unable to provide autonomous consent to elective amputation because they are unable to comprehend the consequence of their decision, at least on the surface, appears to be overly simplistic.
Secondly, to suggest that because those with BIID are unable to provide consent for elective amputation because they are unable to be fully aware of what it is like to live with an impairment appears to set the bar for autonomy unrealistically high. To demand that an individual knows what it is like to be in a position or situation before making the decision that will put them in that position or situation is unreasonable and impractical. To set this standard indiscriminately would mean jeopardising the autonomous decisions in a vast number of situations. For example, one cannot know what it is like to live after an amputation when such an amputation is necessary for more traditional reasons, such as gangrene or trauma. However, the decisions of those who consent to such procedures are not questioned nor considered invalid because of this lack of embodied knowledge. Those consenting to such surgeries are considered to have enough insight into what their lives will be like after an amputation to be seen as sufficient. If this is the case for those people undergoing a non-elective amputation, then it should be the same for those seeking an elective one.
3.3 BENEFICENCE
Healthy limb amputation in cases of BIID could be justified according to the principle of beneficence which constitutes “a moral obligation to act for another’s benefit with the aim
110 Giummarra et al., 'Body Integrity Identity Disorder: Deranged Body Processing, Right Fronto- Parietal Dysfunction, and Phenomenological Experience of Body Incongruity'. 111 Amel Alghrani, Rebecca Bennett and Suzanne Ost, (2013) 'Introduction' in Amel Alghrani, Rebecca Bennett and Suzanne Ost (eds), Bioethics, Medicine, and the Criminal Law Vol 1, the Criminal Law and Bioethical Conflict: Walking the Tightrope, vol 1, 1st edn, (Cambridge: Cambridge University Press)., p.6. 39 being to help further a patient’s important and legitimate interests.”112 Thus, the procedure could be justified if it afforded a greater level of benefit to the individual than the harm it caused. To satisfy such a requirement, the following three conditions would need to be met:
(i) the treatment would need to be effective; (ii) the positive effects of the treatment would need to have a sustainable effect; and, (iii) there would need to be no less drastic treatment option available. These are the same criteria that need to be satisfied in order to justify more conventional amputations.113 For example, in cases of gangrene, the amputation of a limb can be justified according to the principle of beneficence as it would: (i) be an effective treatment option for preventing the spread of the disease and saving that person's life; (ii) act in a sustainable manner, stopping the disease from returning; and, (iii) provided other treatment options had been considered and discounted, be the least drastic option available.
Several academics have argued that the use of therapeutic, healthy limb amputation in cases of BIID fulfils these conditions.114 On the other hand, Müller, one of the most vocal critics of the practice of healthy limb amputation, takes issue with such support. She argues that not enough research has been conducted on the long-term sustainability of the therapeutic effects of the procedure to support such claims.115 This section will reflect on each of these claims individually. It will finish by examining a related argument, that of the prevention of worse potential outcomes, and conclude that there is support for the idea that such elective amputations do confer a level of beneficence.
112 Leslie C. Avant and Keith Mark Swetz, (2020) 'Revisiting Beneficence: What Is a ‘Benefit’, and by What Criteria?', The American Journal of Bioethics, 20(3), pp.75-77., p.75 113 Bayne and Levy, 'Amputees by Choice: Body Integrity Identity Disorder and the Ethics of Amputation'., p.82. 114 Gregg M. Furth and Robert Smith, (2000), Apotemnophilia: Information, Questions, Answers, and Recommendations About Self-Demand Amputation, 1st edn. (Bloomington: 1st Books).; Bayne and Levy, 'Amputees by Choice: Body Integrity Identity Disorder and the Ethics of Amputation'.; First, 'Desire for Amputation of a Limb: Paraphilia, Psychosis, or a New Type of Identity Disorder'.; Keren Fisher and Robert Smith, (2000) 'More Work Is Needed to Explain Why Patients Ask for Amputation of Healthy Limbs', British Medical Journal, 320(7242), pp.1147. 115 Müller, 'Body Integrity Identity Disorder (BIID)—Is the Amputation of Healthy Limbs Ethically Justified?'.; Müller, 'Amputee Envy'.; Müller, 'BIID – under Which Circumstances Would Be Amputations of Healthy Limbs Ethically Justified'; Sabine Müller, (2009) 'BIID–Aqua Fortis for Scientific Explanations of Psychic Phenomena?', The American Journal of Bioethics, 9(1), pp.W3-W4. 40
3.3.1 EFFECTIVENESS
It has been suggested that the effectiveness of amputation as a treatment method in cases of
BIID is unlikely to be high due to the condition’s nature and cause, even though the cause of
BIID is still highly speculative. For example, both Bruno and Grant C. Riddle have claimed that the desire for amputation originates from attention-seeking behaviour caused by an absence of parental love during childhood and adolescence.116 They theorise that, while those with amputations and impairments do receive a level of solicitude in many situations, the daily frustrations which those with impairments face as a result of their atypical bodily constructions will most certainly overshadow such care. Furthermore, they suggest that those with BIID, post-amputation, will likely not be satisfied with the attention of strangers.
Instead, BIID sufferers will desire specific individuals to lavish them with such affection and attention, yet there is no reason to think they would receive this more than those who are non-amputees. Consequentially, Bruno and Riddle claim, it is unlikely that an amputation will provide those with BIID the attention and kindness that they seek.117
From this hypothesis, Bruno goes on to suggest that rather than amputation, the individual needs insight into the underlying source for the impairment desire through options such as psychotherapy.118 This insight would enable that person to address such desires directly rather than attempt to exorcise them via surgery. The effectiveness of using psychotherapy as a treatment option in cases of BIID is verifiable. We can evaluate whether the desire for a healthy limb amputation responds to treatment such as psychotherapy through clinical trials to see whether it is a viable treatment option. If so, then it would suggest, as proposed by
Bruno and Riddle, that the root cause of the desire is psychological/psychiatric. This discovery would, in turn, call into question the effectiveness of elective amputation as a means of treating BIID. However, the data gathered from small-scale empirical studies and
116 Bruno, 'Devotees, Pretenders and Wannabes: Two Cases of Factitious Disability Disorder'.; Grant. C. Riddle, (1988), Amputees and Devotees: Made for Each Other?, 1st edn. (New York: Irvington Publishers). 117 Bruno, 'Devotees, Pretenders and Wannabes: Two Cases of Factitious Disability Disorder'., p.258. 118 Ibid., p.257. 41 case reports suggest that this is not the case. These accounts and studies have reported that the effectiveness of psychotherapy is, at best, negligible.119
Contrasting this, the available data concerning those with BIID, who have been successful in obtaining a healthy limb amputation, indicates a significant increase in well-being. The individuals who received an amputation from Smith have reported being very happy with the outcome of the procedure,120 as were the nine subjects in the First study who had achieved an amputation.121 These positive outcomes have been further corroborated in the work of Sarah Noll and Erich Kasten. They found that not only did none of those individuals whom they interviewed, who had obtained an amputation, regret it, but also that:
In contrast to patients with an amputation due to accidents or infections, BIID-afflicted persons are feeling joyful after the amputation. They listed several disadvantages, but in total they said that the advantage to have reached their goal outbalanced these disadvantages by far.122
A further point related to the unknown therapeutic effectiveness of elective amputation in
BIID cases relates to an argument of Johnston and Elliot. In their 2002 paper, while discussing the history of employing surgery to treat psychiatric conditions, they suggest that it would be ethically dubious to "embark on yet another surgical treatment for a psychiatric condition without first subjecting it to the rigorous standards of research and ethical review that have come to characterise sound scientific medicine."123 Their concern is that while it may be possible that amputation could be an effective treatment option, without undertaking adequate and verifiable empirical research to discern if this is the case, allowing such procedures to go ahead would be highly unethical. They come to this conclusion
119 Arjan W. Braam et al., (2006) 'Investigation of the Syndrome of Apotemnophilia and Course of a Cognitive-Behavioural Therapy', Psychopathology, 39(1), pp.32-37.; First, 'Desire for Amputation of a Limb: Paraphilia, Psychosis, or a New Type of Identity Disorder'.; Blom, Hennekam and Denys, 'Body Integrity Identity Disorder'.; Katharina Kröger, Thomas Schnell and Erich Kasten, (2014) 'Effects of Psychotherapy on Patients Suffering from Body Integrity Identity Disorder (BIID)', American Journal of Applied Psychology, 3(5), pp.110-115. 120 Dyer, 'Surgeon Amputated Healthy Legs'. 121 First, 'Desire for Amputation of a Limb: Paraphilia, Psychosis, or a New Type of Identity Disorder'. 122 Noll and Kasten, 'Body Integrity Identity Disorder (BIID): How Satisfied Are Successful Wannabes'., p.230. 123 Johnston and Elliott, 'Healthy Limb Amputation: Ethical and Legal Aspects'., p.438. 42 because there is the potential that the procedure would have no benefit at all. This lack of benefit would mean that not only had the individual undergone a substantial operation and now needs to live the rest of their life as an amputee, but also that the root cause of their desire, and its attendant suffering, could remain unaddressed and potentially return in another form.
While the idea of not employing substantial medical interventions until they have been proven to have at least an equally substantial therapeutic benefit seems uncontroversial, there are counterarguments to this stance, specifically when discussing rare disorders such as BIID. Christopher Ryan identifies two such counterarguments in his 2008 paper.
The first relates to how medicine and medical professionals proceed when confronted with uncommon or rare conditions and disorders. While the employment of treatments that have gone through extensive and sound empirical research is to be preferred, such research can only be carried out when illnesses and conditions are common enough to allow such investigations to take place. When cases present at highly infrequent rates, be that geographically or chronologically, decisions regarding treatment options, and even policy and clinical guidelines, often must be based on a small number of case reports or analogies with similar conditions. Clinicians are unable to wait for research to come to light in such cases because, if they did, those with these conditions would never receive any treatment, which, in itself, would amount to a non-beneficent/harmful act. This view is summarised by
Ryan, who states, "even without good evidence, treatment decisions must be made, and even to decide to do nothing is to make a decision."124 When an individual with a suspected case of BIID presents themselves to a clinician, the idea that one can opt-out of deciding how that person should be treated is fallacious at best and life-threatening at worst.
Ryan's second criticism of the appeal to a lack of data as a means for refusing treatment identifies the circular logic upon which such a demand for data is based. If surgical interventions are to be prohibited on the grounds of a lack of data regarding their efficacy, then there would be no opportunities for the gathering of such data needed to prove that surgeries effectiveness and allow such operations to go ahead; it is a catch-22. Without
124 Christopher Ryan, (2009) 'Out on a Limb: The Ethical Management of Body Integrity Identity Disorder', Neuroethics, 2(1), pp.21-33., p.28. 43 allowing such surgeries to take place, there can never be the direct data gathering required to either prove or disprove the efficacy of healthy limb amputation in cases of BIID, nor the effectiveness of surgical interventions in a range of other rare conditions.
This point is made even more problematic when we consider that the regulatory frameworks in place in England, as well as several other countries, regarding novel surgical interventions which do not require any form of trial before being employed in the surgical theatre.125 This lack of structure exists even though the Royal College of Surgeons does recommend a framework for innovation, which they provide, be employed.126 This largely deregulated approach stands in contrast to the multiple trials and stages which clinical drugs need to go through before being employed in practice.127 Thus, there is little-to-no regulatory encumbrance preventing surgeons from employing therapeutic, healthy limb amputation as a measure and, as such, no regulation in place preventing the collection of data necessary to support healthy limb amputations.
While the lack of available evidence is most certainly an argument for therapeutic caution, as well as for detailed and careful follow-up sessions to capture the results of interventions, it cannot be an argument for the outright prohibition of a therapeutic undertaking. If that were the case, then the majority of new surgical endeavours would have to be prevented,128 and development within the clinical sector would experience a significant stutter, depriving countless individuals of the potential treatment options required to alleviate their suffering.
125 The Royal College of Surgeons of England, (2014) From Innovation to Adoption: Successfully Spreading Surgical Innovation; Derek J. Roberts et al., (2019) 'Challenges and Potential Solutions to the Evaluation, Monitoring, and Regulation of Surgical Innovations', BMC Surgery, 19(1), pp.119-128; Hans-Jakob Steiger and Eberhard Urhl, (2001) 'How to Control the Risk of Novel Surgical Procedures' Risk Control and Quality Management in Neurosurgery, (Vienna: Springer). 126 Royal College of Surgeons, (2019) Surgical Innovation, New Techniques and Technologies. 127 Lawrence M. Friedman et al., (2015), Fundamentals of Clinical Trials, 5th edn. (New York: Springer); National Health Service, (2019) 'Clinical Trials', NHS,
3.3.2 SUSTAINABILITY OF EFFECT
Associated to questions regarding the effectiveness of the practice of healthy limb amputation in cases of BIID is the debate around whether any beneficial effects would be sustainable, or if the therapeutic effect of amputation would be short-lived and the desire would return, be it in the same manner or another form.
Some anecdotal evidence exists which suggests that, after achieving an amputation in the first instance, some wannabes go on to desire additional amputations or bodily interventions.129 This additional symptom can take the form of the desire moving further up a single limb or shifting to another part of the body entirely. If elective amputations were considered an unqualified treatment option for such individuals, this would then potentially result in some people undergoing successive mutilations of several limbs. To support such an outcome would appear to be counterintuitive as it is hard to comprehend how multiple surgical interventions, leading to multiple healthy limb amputations, could be understood as being a viable treatment option or conferring a complimentary cost-benefit analysis.
Instead, it would appear to enable a symptomatic realisation without doing anything to treat the root cause of the desire.
Müller has made this very argument in her 2009 paper,130 where she cites three different sources as evidence for the phenomenon of symptom shift.131 Noll and Kasten's study into the satisfaction rates of successful wannabes did find that after surgery, "[t]wo felt a wish for
129 Berger et al., 'Nonpsychotic, Nonparaphilic Self-Amputation and the Internet'; Judy Skatessoon, (2005) 'The Ethics of Amputation by Choice', ABC Science,
However, the same study found that these individuals were in the minority, and most of those who took part did not wish for further amputations.133 Indeed, the bulk of studies that explored the post-amputation experience of those with BIID have found that the vast majority of wannabes, who achieve an amputation, are satisfied with their outcomes.134
Anecdotal accounts have further corroborated this pattern.135 When regret is discussed in this context, it is typically done so in regards to not obtaining an amputation sooner.
What one must be wary of when evaluating and discussing qualitative research of this type, and a point noted by Bayne and Levy, is the effect of self-selecting sample bias. As they write:
Adherents of the BIID account are motivated to come forward to adduce evidence in favour of their theory, while those who have had more unhappy experiences simply lose interest in the debate, or are too depressed to motivate themselves to take any further part.136
Thus, there is a greater chance that, as time passes, those who have had a positive experience will continue to put forward their experiences of elective amputation, while those with negative experiences will be less likely to present their accounts. This potential for
132 Noll and Kasten, 'Body Integrity Identity Disorder (BIID): How Satisfied Are Successful Wannabes'., p.228. 133 Seventeen out of twenty persons. 134 First, 'Desire for Amputation of a Limb: Paraphilia, Psychosis, or a New Type of Identity Disorder'.; Blom, Hennekam and Denys, 'Body Integrity Identity Disorder'.; 135 Berger et al., 'Nonpsychotic, Nonparaphilic Self-Amputation and the Internet'.; Taylor, ''My Left Foot Was Not Part of Me''.; Smith, 'Body Integrity Identity Disorder: The Surgeon's Perspective'; Kohrman et al., 'Self-Inflicted Limb Amputation: A Case of Non-Paraphilic, Non-Psychotic Xenomelia'; Ian Tuttle, (2015) 'People Who Cut Off Their Own Limbs (and Their Enablers)', National Review,
While the available evidence would seem to suggest that elective amputations do have a sustainable therapeutic effect for those with BIID, as has been indicated, this is far from being universally accepted. Subsequently, what would be of great benefit would be the undertaking of a long-term, controlled study in which a large sample size of individuals, who have undergone an amputation as a result of BIID, are followed-up periodically in order to provide a clearer picture of the potential for therapeutic sustainability.
Unfortunately, to carry out such a controlled study, surgical amputations would be required, and the ethical approval for carrying out such amputations is, as previously discussed, hard to come by.
3.3.3 EXISTENCE OF A LESS DRASTIC TREATMENT OPTION
Even if the amputation of a targeted limb in cases of BIID were shown via various, robust, large-scale research projects to be both effective at reducing suffering, as well as having a long-lasting and sustainable therapeutic benefit, there would still be a question of its suitability if there was a less drastic effective alternative available. If such an alternative did exist, there would be a duty on clinicians involved in the treatment of BIID to advocate for the less drastic treatment option,137 while discussing all options with the patient as per
Montgomery v. Lanarkshire Health Board.138 This duty is even more significant given the scale and severity of limb amputation.
The two main approaches that have been employed up until this point as possible treatment options, excluding amputation, are psychotherapy and pharmacotherapy. However, at the time of writing, neither of these has been shown to be reliably effective at reducing the desire for amputation.139
137 Ibid., p.83. 138 Montgomery v. Lanarkshire Health Board [2015] UKSC 11. 139 Furth and Smith, Apotemnophilia: Information, Questions, Answers, and Recommendations About Self- Demand Amputation; Gregg M. Furth and Robert Smith, (2002), Amputee Identity Disorder: Information, Questions, Answers, and Recomendations About Self-Demand Amputation (London: 1st Books); First, 'Desire for Amputation of a Limb: Paraphilia, Psychosis, or a New Type of Identity Disorder'; Braam 47
In Noll and Kasten’s study,140 twenty-one participants who had, or have, BIID were asked to give information regarding their experiences of the condition via a questionnaire, either by paper or online. Amongst the topics covered by the questionnaire were what forms of treatment options they had undergone prior to the study, and what effect, if any, these had on their desire for healthy limb amputation. This included techniques such as psychotherapy, pharmacology, as well as relaxation techniques.
They found that out of their study participants, seven had never sought out any therapy, while the rest had tried varying methods. Six had received psychoanalysis, seven had behavioural therapy, and three had depth-psychology,141 twelve had received counselling, one participant had undergone psychodrama, and a final participant had indicated they underwent another form of psychotherapy.142 Despite this range of therapeutic methods, only two participants said that they felt any benefit from undergoing therapy. This is contrasted by the accounts of the other study participants who said that such treatments either did nothing to alleviate their desire for healthy limb amputation or actually increased this desire, the latter being the case for seven participants, two of which said this increase was considerable.
From the thirteen participants who had undergone relaxation techniques, several methods were tried, and one individual tried five different techniques. Eight underwent autogenic training,143 seven did meditation, five tried progressive muscle relaxation therapy, one participant did Yoga, another one did the martial art Qigong, and two selected the 'other' category on the questionnaire. Only two participants stated a decrease in their desire for amputation; four declared no change in their desire, and, quite possibly due to the self- reflective nature of these techniques, seven persons found that their desire for limb
et al., 'Investigation of the Syndrome of Apotemnophilia and Course of a Cognitive-Behavioural Therapy'; Khalil and Richa, 'Apotemnophilia or Body Integrity Identity Disorder'. 140 Noll and Kasten, 'Body Integrity Identity Disorder (BIID): How Satisfied Are Successful Wannabes'. 141 Depth-psychology is a branch of psychology that is specifically geared towards exploring the subtle, unconscious, and transpersonal influences on human behaviour. 142 Noll and Kasten, 'Body Integrity Identity Disorder (BIID): How Satisfied Are Successful Wannabes'., p.228. 143 This is a desensitisation-relaxation technique which draws attention to a person’s individual body parts and aims to elicit feelings of heaviness and calm. 48 amputation increased, with two stating that this increase was substantial. While this study had a relatively small sample size, and we should be wary about generalising its findings to a broader population, its conclusions correspond with those studies of a similar nature.144
However, as indicated earlier in this thesis, psychological and psychiatric care is only one branch of treatment options. Those that believe BIID to have a neurological cause have attempted to address the disorder via neurological methods. The more recent trend in this approach to the treatment of BIID began in 2007 with the work of Vilayanur S.
Ramachandran and Paul McGeoch.145 As discussed in Chapter Two, each study that has a neurological foundation has used different samples and techniques of investigation. The overall aim, to explore and possibly prove the possibility of a correlation between neurological causes and BIID, with several finding that in people with BIID, there was
"altered cortical architecture (or activity), mainly in the parietal lobe, and atypical behaviours monitored by these same areas."146 The significance of this data in regards to treatment options for those with BIID is that if the condition shares a similar neurological cause with another condition for which there is a cure, it may be the case that a similar treatment option might work to remove, or reduce, the desire for healthy limb amputation in BIID.
Such a theory was presented in the 2007 paper by Ramachandran and McGeoch.147 They proposed that as the desire to amputate a healthy limb in BIID shares some features with
Somatoparaphrenia,148 then it could be possible that caloric vestibular stimulation (CVS), the
144 First, 'Desire for Amputation of a Limb: Paraphilia, Psychosis, or a New Type of Identity Disorder'.; Kröger, Schnell and Kasten, 'Effects of Psychotherapy on Patients Suffering from Body Integrity Identity Disorder (BIID)'.; Blom, Hennekam and Denys, 'Body Integrity Identity Disorder'.; Erich Kasten and Frederike Spithaler, (2009) 'Body Integrity Identity Disorder: Personality Profiles and Investigation of Motives' in Aglaja Stirn, Aylin Thiel and Silvia Oddo (eds), Body Integrity Identity Disorder: Psychological, Neurobiological, Ethical and Legal Aspects, 1st edn, (Lengerich: Pabst Science Publishers). 145 Vilayanur S. Ramachandran and Paul D. McGeoch, (2007) 'Can Vestibular Caloric Stimulation Be Used to Treat Apotemnophilia?', Medical Hypotheses, 69(2), pp.250-252. 146 Sedda and Bottini, 'Apotemnophilia, Body Integrity Identity Disorder or Xenomelia? Psychiatric and Neurologic Etiologies Face Each Other'., p.1259. 147 Ramachandran and McGeoch, 'Can Vestibular Caloric Stimulation Be Used to Treat Apotemnophilia?'. 148 As discussed in reference to Sacks, Somatoparaphrenia is a neuropsychological symptom characterised by a monothematic delusion where one denies ownership of a limb or an entire side of one’s own body. The condition presents typically after right hemisphere brain damage. 49 standard treatment course for Somatoparaphrenia, may be effective at eliminating the desire for healthy limb amputation in cases of BIID. They went on to argue that "if symptoms disappear after CVS administration, the condition can be considered to be of neurological origin and, consequently, treatments to abolish the desire should rely on physiological manipulations of specific brain areas."149 This theory has since been tested by Bigna
Lenggenhager, Leonie Hilti, and Peter Brugger.150 They used CVS on thirteen individuals with BIID and found that the stimulation did not alter the feeling of estrangement. Their paper concluded that as symptoms related to the desire for healthy limb amputation in BIID cases did not disappear after CVS, the stimulation was not a suitable treatment option and, as such, they believe they refuted Ramachandran and McGeoch's theory.
However, Ramachandran and McGeoch's point regarding the implementation of physiological manipulations of specific brain areas to treat BIID still stands. If it were demonstrated through a large-scale study that BIID was the result of atypical neurological structure/functioning, and that an effective yet non-drastic treatment option, similar to that of CVS, presented itself, there would be a compelling argument to resist a request for amputation and instead advocate for this less drastic treatment to remove the desire. This is because this less drastic option would cause less overall harm, at least according to this appeal to the desire to implement the least drastic therapeutic option.
This advocating of the minimally drastic treatment option would have to be done in a manner that respects the patient’s autonomy and their legal right to refuse treatment.151 This legal right does not conversely compel a clinician to provide a treatment that they believe to be inappropriate, futile, or unnecessary as there is no legal right to demand specific treatments.152 Thus, while an individual with BIID could refuse any treatment which a clinician discusses with them, neurological or otherwise, that individual cannot demand a healthy limb amputation from a clinician who is unwilling to provide one.
149 Sedda and Bottini, 'Apotemnophilia, Body Integrity Identity Disorder or Xenomelia? Psychiatric and Neurologic Etiologies Face Each Other'., p.1259. 150 Lenggenhager et al., 'Vestibular Stimulation Does Not Diminish the Desire for Amputation'. 151 See: Re T (Adult: Refusal of Medical Treatment) [1992] EWCA Civ 18. 152 See: R (on the Application of Burke) v. General Medical Council [2004] EWHC 1879. 50
3.3.4 PREVENTION OF WORSE OUTCOMES
It could be possible to employ an argument appealing to the principle of beneficence to justify amputation in BIID cases if such a procedure were undertaken to prevent an even worse outcome, such as an attempt at self-amputation. This was one of the arguments Smith employed to defend the two healthy limb amputations he carried out.153
One of the most striking features of the entire debate surrounding BIID is that of the stories of individuals who have attempted, or been successful, in carrying out a DIY amputation.
Even a cursory glance at some of the internet sites and forums 'wannabes' run demonstrates a wealth of advice regarding the best methods for self-amputation or for ways to damage a limb to such a degree to ensure that surgeons have no choice but to amputate.154
Of the fifty-two respondents to First's study, six had amputated limbs themselves through a variety of methods, including a shotgun, a chainsaw, a wood-chipper and dry-ice.155 Similar accounts can be found in the studies by Claire Dyer,156 Judy Skatessoon,157 and Furth and
Smith,158 as well as case reports and anecdotal evidence.159 Even if a person with BIID rules out self-amputation, they still have the option to secure a healthy limb amputation on the black market. This was what Philip Bondy did when, in May 1998, he travelled to Mexico to receive a healthy limb amputation from unlicensed surgeon John Ronald Brown.160 Bondy paid Brown $10,000 for a healthy limb amputation. Two days after the operation, Bondy was
153 BBC News, 'Surgeon Defends Amputations'. 154 See: Reddit, 'Body Integrity Identity Disorder',
Given that it is not uncommon to hear of cases of those with BIID seeking out such dangerous methods, risking severe injury and even death to achieve their goals, there is an argument to be made that by surgeons offering healthy limb amputations they would be able to prevent dangerous self-mutilation and even death. As put by Bayne and Levy, "at least as long as no other treatments are available, surgery might be the least of all evils."163
This stance, however, has met with resistance from academics and clinicians who have argued that the potential actions of those with BIID cannot justify the actual actions of those clinicians who facilitate a healthy limb amputation. The central point of this argument rests upon the claim that elective amputation, as a preventative measure, would only be justifiable if self-amputation was an inevitability. If such amputations were inescapable, then this would reframe the discussion regarding harm prevention to one of skill; i.e. the question would not be if an amputation should/will take place, but rather, who is best qualified to carry out such an amputation. However, this is not the case — many of those who claim to have BIID resist the urge to self-amputate. Thereby, harm prevention, at least in the strictly physical sense, appears to be unpersuasive as self-amputation is a possibility, not an inevitability.
3.4 NONMALEFICENCE
Related to concerns regarding the beneficence of healthy limb amputation in cases of BIID comes questions concerning the harms that such surgeries could inflict. While the principle of beneficence requires us to contribute, where possible and reasonable, to the welfare of an individual, the principle of nonmaleficence obligates us to avoid causing harm to others. In a medical ethics setting, it can be roughly equated to the maxim of primum non nocere, or, above all [or first] do no harm.164 This concept, while often misattributed to the Hippocratic
161 Gas Gangrene is a medical condition associated with dirty surgical conditions and the improper care of wounds. It is normally easily treatable but if ignored, can kill within days. 162 People v. Brown [2001] 91 Cal App 4th 256. 163 Bayne and Levy, 'Amputees by Choice: Body Integrity Identity Disorder and the Ethics of Amputation'., p.79. 164 Raanan Gillon, (1985) '"Primum Non Nocere" and the Principle of Non-Maleficence', British Medical Journal, 291(6488), pp.130-131. 52
Oath itself, can be found within the pledge, which states, "I will use treatment to help the sick according to my ability and judgement, but I will never use it to injure or wrong them."165 Thereby further cementing the importance of nonmaleficence in medical practice, both internally to medicine and in the public’s perception of appropriate medical practice.
This principle requires of us, and of surgeons considering providing an elective amputation in a case of BIID, as well as all other clinical and surgical measures, that we act in a manner that refrains from causing harm to others.
Critics of such operations, who utilise appeals to the principle of nonmaleficence, do so by stating that it requires that surgeons and medical practitioners abstain from carrying out amputations without a recognised and justifiable medical requirement. They argue that by amputating a healthy limb, a surgeon would be contravening the principle of 'do no harm' as amputation causes extreme levels of harm.166
Amputations in cases of BIID can be understood to constitute harms in three ways: (i) the potential for pain and the risks involved in not only amputations but all surgical interventions; (ii) the destruction of healthy tissue as a result of removing a healthy limb from an individual; and, (iii) the generation of disability where none existed before. The understanding of these risks affects how the act of elective amputation in cases of BIID is evaluated against the principle of nonmaleficence.
3.4.1 THE GENERAL RISKS OF SURGERY
The risks associated with an amputation, be that elective or otherwise, vary greatly. Factors that influence these risks include the medical history and current medical state of the individual undergoing the amputation, the environment in which the amputation is taking place, the level of care which the area of amputation and the amputee receives post- procedure, not to mention the skill of the individual and broader team carrying out the operation.167 Each one of these influences the outcome of amputation in a substantial
165 Thomas L. Beauchamp and James F. Childress, (2013), Principles of Biomedical Ethics, 7th edn. (New York: Oxford University Press)., p.150. 166 Müller, 'Amputee Envy'. 167 Caroline Gunaratnam and Mark Bernstein, (2018) 'Factors Affecting Surgical Decision-Making - a Qualitative Study', Rambam Maimonides Medical Journal, 9(1), pp.e0003. 53 manner. Whether an individual flourishes or even survives an amputation rests upon these, amongst other, factors.
However, even if these factors align to create the ideal patient/surgeon/operating environment combination, one which would provide the optimum chance of a positive outcome for an individual having an amputation, there are still risks inherent with the procedure. Complications can present themselves in the form of infection, thrombosis, necrosis, phantom pain, pneumonia, as well as a variety of other problems which can result from such a procedure.168 Additionally, there is also the risk that a patient dies during an amputation due to an unforeseen complication like an unexpected reaction to anaesthesia.169
These complications are not strictly limited to amputations. Every surgical intervention carries with it a level of risk. Thus, arguments against BIID-driven healthy limb amputation, which employs the principle of nonmaleficence via this approach, suggest that because of the high risk associated with amputations, due to the significant nature of the surgical intervention, it is unethical to perform the procedure without medical indication. This unethicality is resultant from the avoidable exposure to significant risk that the individual in question experiences; all for a procedure which is, according to some, medically unnecessary.170
The counterargument to this point is that surgical interventions are regularly employed for non-therapeutic purposes, such as organ removal for living organ donation,171 as well as cosmetic procedures.172 If these procedures are acceptable, then a healthy limb amputation
168 National Health Service, (2019) 'Amputation', NHS,
…articulate their augmentation desires through statements that are nearly identical to mainstream plastic surgery applicants, but they are not granted the same legitimacy by the medical community, thereby bringing into focus the role that the body plays in arguments about its plastic potential.175
This point, regarding the legitimacy of specific medical treatments, their relationship to the broader 'goal' of the medical profession, and the body’s plastic and morphological potential, is something which I will expand upon later in this thesis, specifically in Chapter Five.176
Müller presented a rebuttal to this comparative method while discussing the principle of nonmaleficence concerning BIID-driven amputations. She writes, "[e]ven though some
173 That is not to say that such procedures are universally accepted. Indeed, there is debate surrounding the role that aesthetic/cosmetic surgical procedures should have within society. See: Dennis J. Baker, (2014) 'Should Unnecessary Harmful Nontherapeutic Cosmetic Surgery Be Criminalized?', New Criminal Law Review, 17(4), pp.587-630. However, given that legislation and regulation frameworks exist through which such procedures can take place, alongside a general acceptance of the measures within western societies, I will, at least for the time being, take them as being generally acceptable according to moral, social and legal norms. 174 Christopher James Ryan, Tarra Shaw and Anthony W. F. Harris, (2010) 'Body Integrity Identity Disorder: Response to Patrone', Journal of Medical Ethics, 36(3), pp.189-190. 175 John W. Jordan, (2004) 'The Rhetorical Limits of the “Plastic Body”', Quarterly Journal of Speech, 90(3), pp.327-358., p.329. 176 One may want to question the framing of amputations as inherently medical in the first place. Rather than consider such modifications as therapeutic, they could be seen in terms of an extreme body modification. A full interrogation of the tension between medical and non-medical practices falls outside the scope of this thesis. Instead, see: Robin Mackenzie, (2008) 'Somatechnics of Medico- Legal Taxonomies: Elective Amputation and Transableism', Medical Law Review, 16(3), pp.390-412; Nikki Sullivan, (2005) 'Integrity, Mayhem, and the Question of Self-Demand Amputation', Continuum, 19(3), pp.325-333. 55 physicians perform harmful surgeries as breast enlargement surgeries, this cannot justify surgeries that are even more harmful."177 What exactly it is that Müller identifies as being harmful in cases of breast augmentation is somewhat ambiguous. It is not clear whether she believes the surgery itself is harmful or whether the surgery, as a result of it not typically conferring any therapeutic effect, is what makes it harmful. However, the critical point to note here is that, according to Müller, one cannot justify the exposure to risk associated with amputations in cases of BIID via comparison to the voluntary exposure of similar risk in other surgeries. For Müller, amputation is more significantly harmful than breast augmentation, and as such, the latter cannot be used a means of legitimising the exposure to the risk generated by the former.
3.4.2 THE DESTRUCTION OF HEALTHY TISSUE
As identified by Ryan, one of the most likely reasons a surgeon would give when refusing to amputate a healthy limb is that the intentional damaging and destruction of healthy tissue breaches the principle of nonmaleficence.178 Even to the general public, as evidenced by responses to the media attention the Smith amputations wrought,179 an amputation appears to be a mutilating procedure and, consequentially, not ethically acceptable to carry out on a healthy limb. Such an attitude can be seen as the classical embodiment of the principle of nonmaleficence; that 'above all, do no harm' means that we should not cause damage or destruction upon healthy tissue or remove healthy body parts. However, such a simplistic interpretation of the principle is problematic at best and paralysing at worst.
Despite its popularity and intuitive appeal, one of the central problems with the principle of nonmaleficence is its vagueness and, in some ways, detachment from the 'real-world'
177 Müller, 'Body Integrity Identity Disorder (BIID)—Is the Amputation of Healthy Limbs Ethically Justified?'., p.41. 178 Ryan, 'Out on a Limb: The Ethical Management of Body Integrity Identity Disorder'., pp.27-28. 179 More recent examples of the public reaction to self-initiated, BIID-driven amputations, are easy to find courtesy of newspaper comment sections. Reactions from just one article include: “Sicko! Needs putting down!”; “Some marbles are missing upstairs in his box”; and “Shoot. Me. Now There [sic] are plenty of wounded amputee vets out there who’d take his BIID and shove it where it belongs” DailyMail.Com Reporter, (2019) 'The Man Who Hated His Own Leg So Much He Had It Amputated: Perfectly Healthy Man with Condition Known as BIID Reveals How He Bashed His Limb with a Rock to Fool Doctors into Removing It and Now 'Loves' His Life and Is a Sex Symbol for Amputee Fetishists',
For example, to remove an inflamed appendix, a surgeon must first make an incision through the abdominal wall, which, most likely, is undamaged and healthy before the surgery begins. While this damage will be expected to heal and may leave a small scar, the literal principle of nonmaleficence is nevertheless breached as the prevention of harm is not considered to be 'above all' but is secondary to the practicalities of carrying out an appendectomy. Harm is caused to the individual through the damaging of healthy tissue, but the destruction and damaging of tissue to allow for the removal of an appendix is not typically an ethical dilemma. The benefit which results from such a procedure outweighs what is minor harm comparatively. It is accepted that to allow for the removal or repair of unhealthy tissue, in our example an inflamed appendix, a degree of unavoidable healthy tissue damage can be inflicted.
Thus, it can be argued that if the principle is to have any value, it must be employed as an injunction against those who would cause their patients more harm than benefit,180 such as through the removal of a person’s leg to treat a case of athlete’s foot, for example.
Alternatively, it could be used as a means of preventing harms from being inflicted upon someone under the justification of a benefit which may be highly uncertain.
Even in cases where no diseased or damaged tissue exists within an individual and that person can be described as healthy, there are multiple examples of cases where it is generally seen as ethically acceptable to cause a level of healthy tissue damage and body part removal. Living organ donors can choose to give up a lung, kidney, or liver lobe to benefit another individual without receiving any medical benefit themselves. Regularly, women who are at high levels of risk of developing cancer undergo mastectomies or oophorectomies to reduce their risk and diminish their apprehension of living with such a
180 Daniel K. Sokol, (2013) '“First Do No Harm” Revisited', British Medical Journal, 347, pp.23-24. 57 high risk of developing the disease. The act of body modification is itself considered, by many, to be a viable treatment option for those suffering from Gender Dysphoria.181 In each of these cases, the generation of harm as a result of healthy tissue destruction or damage is offset, not by the immediate medical benefit afforded to that individual, as is the case with
'classical' amputations, but by the psychological and risk management benefits of such measures. The very same benefits which proponents of healthy limb amputation in cases of
BIID argue those with the condition would receive by having access to such a procedure.182
3.4.3 THE GENERATION OF DISABILITY
Beyond the immediate risks of surgery and the destruction of healthy tissue through the removal of a medically viable leg, another way in which harm can be considered to manifest itself in cases of healthy limb amputation for BIID, leading to the breaching of the principle of nonmaleficence, is via the creation of a disability where none existed before. This harm is a more abstract one than the others discussed because of it not being identified and located at a single time or in a single place, but as a new and ever-present factor within an individual's life; a factor that exists as a result of having an atypical body construction as a result of undergoing an amputation.
Opponents to healthy limb amputation in BIID cases argue that to act in a way or carry out a procedure with the explicit goal of giving a person a disability constitutes harm as disabilities, by their very nature, are the antithesis of a healthy body. By creating a disability, they argue, a surgeon would transition their patient from a healthy embodiment to an unhealthy one. As healing is the opposite of harming, to do so inflicts harm on an individual. Consequentially, those who do so breach the principle of nonmaleficence.
181 Whilst Gender Reassignment Surgery is considered by many to be a viable treatment option and is available via the NHS, it is not entirely without its critics. Concerns relating to the long-term effectiveness of such surgeries have been expressed over recent years, as has the appropriateness of such surgeries in the first place. However, these concerns are typically voiced by the minority. 182 Bayne and Levy, 'Amputees by Choice: Body Integrity Identity Disorder and the Ethics of Amputation'.; Robert Smith, (2013) 'Body Integrity Identity Disorder: A Problem of Perception?' in Amel Alghrani, Rebecca Bennett and Suzanne Ost (eds), Bioethics, Medicine, and the Criminal Law Vol 1, the Criminal Law and Bioethical Conflict: Walking the Tightrope, (Cambridge: Cambridge University Press)., p.75. 58
Such a view is proposed by Bruno who, as interpreted by Nikki Sullivan, suggests that
"disability is unnatural insofar as it is the result of an accident (whether congenital or social);
It is, by definition, both an aberration and an abomination and as such, is literally undesirable."183 This view is one which is shared by many in the contemporary West, as noted by Jordan who writes that "even suggesting that an amputated body would be preferable to a healthy, full-limbed body would seem to contradict every tenet of cultural body logic."184 This resistance to allow even the discourse that the impaired body could be preferable to the non-impaired body is, once again, evident in the manner in which people responded to the Smith amputations, and the instant questioning of the mental states of BIID sufferers. As argued by Reynolds, to question their mental state based on the singular fact that they value the impaired form over the non-impaired betrays an ableist mentality.185 A mentality where only the healthy form is that which can be wanted and to desire anything otherwise is indicative of a significant mental disorder. One so severe that the capacity to make decisions regarding one’s medical treatment is brought into question. As reflected upon by Jozsef Kovacs:
Our paternalistic prohibition to provide surgery for BIID patients mirrors our own aversion of physical disabilities and our deep ignorance of the psychic suffering that a psychiatric disorder may mean for the person who has it.186
However, this assumption that disability is intrinsically unnatural and undesirable is one that has been challenged repeatedly, especially by those working in the field of disability studies such as Rose Garland-Thomson187 and Lennard J. Davis.188 Such authors challenge
183 Nikki Sullivan, (2014) 'Body Integrity Identity Disorder (BIID) and the Matter of Ethics' in John D. Arras, Elizabeth Fenton and Rebecca Kukla (eds), The Routledge Companion to Bioethics, 1st edn, (London: Taylor and Francis)., p.584. 184 Jordan, 'The Rhetorical Limits of the “Plastic Body”'., p.341. 185 Reynolds, 'Toward a Critical Theory of Harm: Ableism, Normativity, and Transability (BIID)'; Joel Michael Reynolds, (2017) '“I’d Rather Be Dead Than Disabled”—the Ableist Conflation and the Meanings of Disability', Review of Communication, 17(3), pp.149-163. 186 Jozsef Kovacs, (2009) 'Whose Identity Is It Anyway?', The American Journal of Bioethics, 9(1), pp.44- 45., p.44. 187 Rosemarie Garland-Thomson, (2002) 'Integrating Disability, Transforming Feminist Theory', NWSA Journal, 14(3), pp.1-32. 188 Lennard J. Davis, (1995), Enforcing Normalcy: Disability, Deafness, and the Body, 1st edn. (London: Verso). 59 classic concepts of disability, such as that held by Bruno, through demonstrating that there is not an inherent dichotomy between disability and non-disability, but rather the former is essential to the latter. They aim to demonstrate that "disability is a regulatory fiction, 'a function of the concept of normalcy' which shaped not only the lived bodies of those it purports to merely describe but also those deemed able-bodied."189 Such a train of thought closely follows the theoretical underpinnings of the Social Model of Disability, a theoretical structure which this thesis will employ and which will be discussed later in Section 4.4.
In addition to those who argue that disability is intrinsically harmful or undesirable, as is the act of making someone disabled, criticisms of the generation of disability can also arise from a consequentialist approach. Such arguments purport that, as the difficulties which those with disabilities experience in regards to navigating the physical environment are greater than those experienced by the non-disabled, and can be understood as harms as they restrict opportunities which can generally be understood to be good, then amputating healthy limbs in cases of BIID is unethical as the consequence of that act generates harm.
Such an argument is alluded to in a paper by Stevens when discussing the role of devaluing disability in pathologising ‘transableism’.190 While referencing the critical disability studies lens, she writes, "this theoretical framework provides for apt analysis on how removing a limb or severing the spinal cord upon request is deemed unethical 'harm' because of the historically denigrated status of disability."191 Here, Stevens understands harm as a physical, economic, and social exclusion experienced by those with disabilities, and goes on to reference the American Civil Liberties Union 1999 Briefing Paper on Disability Rights, which states:
…people with disabilities are still, far too often, treated as second-class citizens, shunned and segregated by physical barriers and social stereotypes. They are discriminated against in employment, schools, and housing, robbed of their personal autonomy, sometimes even hidden away
189 Sullivan, 'Body Integrity Identity Disorder (BIID) and the Matter of Ethics'., p.585. 190 The term ‘transability’, from which transableism is derived, was initially coined by transabled activist Sean O’Connor, and, while Stevens focuses her analysis on the experience of being disabled in the United States of America, her argument can easily be extrapolated to a broader geographical context. 191 Stevens, 'Interrogating Transability: A Catalyst to View Disability as Body Art'. 60
and forgotten by the larger society. Many people with disabilities continue to be excluded from the American dream.192
It is this treatment as second-class citizens and discrimination that opponents to healthy limb amputation want to avoid for those seeking such a procedure. Critics reason that a non- disabled individual who has an amputation moves from a lived experience in which they are part of the statistical majority to one where they are a minority and, consequentially, are harmed as they now have to cope with social and physical exclusion.
3.4.3.1 Technology and Disability
As briefly noted in Chapter Two, it is not uncommon for individuals who have been successful in obtaining a healthy limb amputation, as a means of addressing their BIID, to use, or plan to use, assistive devices, such as prosthetic limbs, to aid them in their daily comings-and-goings.193 If one is to discuss whether ‘inflicting’ disability on a person at their request contravenes the principle of nonmaleficence, then one must consider the capability of such assistive devices. This is because these devices fundamentally influence the post- amputation experience of those who make use of, and have access to, them. Prosthetic usage has been linked to higher levels of employment and decreased pain from phantom limbs,194 greater quality of life,195 a reduction in the propensity of psychiatric comorbidity,196 as well
192 Ibid. 193 Sorene, Heras-Palou and Burke, 'Self-Amputation of a Healthy Hand: A Case of Body Integrity Identity Disorder'; Arjan W. Braam and Nicole de Boer-Kreeft, (2009) 'Case Report - the Ultimate Relief; Resolution of the Apotemnophilia Syndrome' in Aglaja Stirn, Aylin Thiel and Silvia Oddo (eds), Body Integrity Identity Disorder: Psychological, Neurobiological, Ethical, and Legal Aspects, 1st edn, (Lengerich: Pabst Science Publishers); Johnson, Liew and Aziz-Zadeh, 'Demographics, Learning and Imitation, and Body Schema in Body Integrity Identity Disorder'; Noll and Kasten, 'Body Integrity Identity Disorder (BIID): How Satisfied Are Successful Wannabes'; Stone et al., 'Mental Rotation of Feet in Individuals with Body Integrity Identity Disorder, Lower-Limb Amputees, and Normally- Limbed Controls'. 194 Katherine A. Raichle et al., (2008) 'Prosthesis Use in Persons with Lower- and Upper-Limb Amputation', Journal of Rehabilitation Research and Development, 45(7), pp.961-972. 195 Selim Akarsu et al., (2013) 'Quality of Life and Functionality after Lower Limb Amputations: Comparison between Uni- Vs. Bilateral Amputee Patients', Prosthetics and Orthotics International, 37(1), pp.9-13. 196 Dilek Durmus et al., (2015) 'The Relationship between Prosthesis Use, Phantom Pain and Psychiatric Symptoms in Male Traumatic Limb Amputees', Comprehensive Psychiatry, 59, pp.45-53. 61 as a broader reduction in secondary health issues.197 An individual who is only able to utilise a rudimentary ‘peg-leg’ will have a drastically different experience of disability compared to someone who owns a bespoke, cutting-edge, carbon fibre, lower-limb prosthetic with microprocessor-controlled joints. Indeed, the very constitution of disability, pathology, and health are inextricably linked to our collective technological and scientific capabilities.198
Despite this close link between the body and technology, nothing substantive has been written regarding what impact prosthetic technologies will have on the permissibility of healthy limb amputation. I suspect this is because, currently, some issues and concerns appear to be more pressing, those being the topics discussed in this chapter, both so far and still to come. However, remaining ignorant due to pragmatism does a disservice to BIID’s academic exploration and those with the condition. If one is to discuss whether a healthy limb can be amputated, then one must, at a minimum, consider what technologies would be available to that person post-surgery.
This point becomes particularly salient when it comes to the development of neuroprosthetics; artificial limbs which interact with the neurological processes of their user to recreate the functionality and sensory experience of a biological limb. Once relegated to the realm of science-fiction, developments in this specialised field have resulted in the potential realisation of such synthetic bodily components. This potential invariably leads to the question, which was used as the title for a 2015 Guardian article, ‘What if a bionic leg is so good that someone chooses to amputate?’199 Such a line of reasoning, specifically regarding the generation of disability as a harm in cases of BIID, will be explored in Chapter Seven.
3.5 JUSTICE
Another argument that is often brought up in the debates surrounding the question of elective amputation in cases of BIID focuses not on the individual requesting the procedure,
197 Gayle E. Reiber et al., (2010) 'Servicemembers and Veterans with Major Traumatic Limb Loss from Vietnam War and OIF/OEF Conflicts: Survey Methods, Participants, and Summary Findings', Journal of Rehabilitation Research and Development, 47(4), pp.275-297. 198 Bjørn Hofmann and Fredrik Svenaeus, (2018) 'How Medical Technologies Shape the Experience of Illness', Life Sciences, Society and Policy, 14(3), pp.1-11. 199 Jemima Kiss, (2015) 'What If a Bionic Leg Is So Good That Someone Chooses to Amputate?', The Guardian,
Costs associated with amputations involve medical treatment, rehabilitation, prosthetic limb production, loss of working hours, social benefit claims, and in some cases, early retirement.200 All of these can add up and place additional stresses on a society’s economic, social, and material resources. Critics of the practice of healthy limb amputation employ the principle of justice and ask, why should the immediate and subsequent costs of carrying out an avoidable amputation be borne by a community as a whole? Müller’s answer to this question is that they should not. She argues:
…public financing for elective amputations is ethical[ly] permissible only if the amputations are strictly necessary to cure a severe disease, but not when they are performed because of aesthetic, erotic, or financial interests. But since amputations cannot be justified as a medical therapy for BIID, they have to be excluded from public financing with regard to the principle of justice.201
This argument is open to several criticisms. As previously discussed in Section 3.3, there is anecdotal, as well as small-scale study, evidence to suggest that amputation in BIID cases is a possible cure for the condition. This is because the majority of those who have succeeded in gaining their desired amputation experience high levels of satisfaction combined with a complete decrease in the distress caused by the desire. Thus, there is an argument to be made for the use of public finances to carry out a procedure that can, potentially, reduce
BIID caused suffering. Smith, on several occasions, has argued this point.202 Furthermore, the apparent lack of effectiveness of other forms of intervention, such as psychotherapy and pharmacotherapy, supports the idea that elective amputation is necessary to address the perceived incongruity as no other options currently exist.
200 Jenny Slatman and Guy Widdershoven, (2009) 'Being Whole after Amputation', The American Journal of Bioethics, 9(1), pp.48-49., p.48. 201 Müller, 'Body Integrity Identity Disorder (BIID)—Is the Amputation of Healthy Limbs Ethically Justified?'., p.41. 202 Smith, 'Body Integrity Identity Disorder: The Surgeon's Perspective'.; Robert Smith and Keren Fisher, (2003) 'Healthy Limb Amputation: Ethical and Legal Aspects', Clinical Medicine, 3(2), pp.188.; Smith, 'Body Integrity Identity Disorder: A Problem of Perception?'. 63
Another point of contention originates from the concept that such amputations are optional.
Thus, by refusing to carry them out under a controlled medical environment, public finances can be diverted to ‘more deserving’ medical procedures.203 This reasoning is debated because there is no guarantee that by refusing to carry out an amputation when requested, resources will be conserved and put towards other procedures. As discussed, the distress which those with BIID can experience as a result of the presence of the affected limb can exist to such a high degree that they will take matters into their own hands and attempt a self-amputation or damage the limb to such an extent that there is no other option than to amputate to save that person’s life. Life-saving treatments for self-administered amputations and amputation attempts are incredibly costly.204 The cost is so high that it is cheaper and safer, in the majority of cases, to carry out a planned elective amputation than it is to action life-saving emergency operations.205
Furthermore, the recuperation period for an individual undergoing an elective amputation on a healthy limb is shorter than that of someone who has attempted a self-amputation.
When recalling the recovery period of the two people whom he carried out elective amputations upon, Smith recalled that they were “discharged from the hospital after their elective amputation within three days. No patient having a traumatic amputation would recover that quickly.”206 Additionally, there would be a reduction in costs as a result of not needing to send emergency service staff to the site of the amputation attempt.
A final point regarding the principle of justice relates to the long-term, follow-on costs of providing elective amputations. This incorporates the potential loss of income for both that individual, their families, and the absence of taxation, which they may no longer pay. Müller makes this point and argues that even if the amputation was privately financed, as was the case with the Smith amputations, amputees require lifelong follow-up costs and, “a welfare
203 Patrone, 'Disfigured Anatomies and Imperfect Analogies: Body Integrity Identity Disorder and the Supposed Right to Self-Demanded Amputation of Healthy Body Parts'. 204 Hassan Al-Thani, Brijesh Sathian and Ayman El-Menyar, (2019) 'Assessment of Healthcare Costs of Amputation and Prosthesis for Upper and Lower Extremities in a Qatari Healthcare Institution: A Retrospective Cohort Study', British Medical Journal Open, 9(1), pp.e024963. 205 Adil H. Haider et al., (2015) 'Incremental Cost of Emergency Versus Elective Surgery', Annals of Surgery, 262(2), pp.260-266. 206 Smith, 'Body Integrity Identity Disorder: A Problem of Perception?'., p.79. 64 state has to finance these costs, even for a devotee who signs a waiver declaration before the elective amputation.”207 It is intuitive to think that an individual with a disability is, by definition, dependent. Amputees often do experience difficulties with mobility and self-care, and these can create issues that will generate additional expenses for their community.
However, evidence suggests that by providing elective amputations to those with BIID, productivity is not impacted in the same way as it is in classical forms of amputation. Noll and Kasten identified several individuals who, rather than being limited after their elective amputations, felt free from prior constrictions and, in turn, claimed to be more productive, not only in their professional lives but also in their personal ones as well. The researchers go on to claim that their results “point to the fact that the often assumed negative consequences of an amputation or further surgery do not occur.”208 Smith also notes that once BIID sufferers achieve an amputation, “they no longer consume psychiatric resources, as their reactive psychiatric problems resolve.”209 These claims lend themselves to the counter- intuitive idea that by providing healthy limb amputations for those seeking such procedures, their productivity can be increased. This can then lead to an increase in potential earnings as that person’s energies are no longer being directed towards their concerns regarding being ‘over-complete’.
3.6 THE LEGAL LANDSCAPE OF HEALTHY LIMB AMPUTATION IN CASES
OF BIID
In addition to the professional and personal ethical considerations that deter medical personnel from carrying out healthy limb amputations, legal concerns also likely play a considerable role in their reluctance to provide such procedures to those with BIID. Even if surgeons can be convinced that amputation in these cases is the ethically correct course of action,210 fear of potential criminal prosecution will likely deter many from doing so. They
207 Müller, 'Body Integrity Identity Disorder (BIID)—Is the Amputation of Healthy Limbs Ethically Justified?'., p.79. 208 Noll and Kasten, 'Body Integrity Identity Disorder (BIID): How Satisfied Are Successful Wannabes'., p.222. 209 Smith, 'Body Integrity Identity Disorder: A Problem of Perception?'., p.79. 210 Convincing would likely be required as there is no right in English law to demand specific treatment for a therapeutic purpose, such as healthy limb amputation, regardless of whether that is in the NHS or private sector. See: R (on the Application of Burke) v. General Medical Council [2004] EWHC 1879. 65 may also refuse to undertake such surgical endeavours as a means of avoiding potential civil claims against them in the form of clinical negligence.211 Even if that individual surgeon is willing to amputate despite the potential personal risks, they may be prevented from doing so by hospital management over concern of the potential reputational damage such procedures could bring upon their institutions, as was the case in the Smith operations.212
Absent specific criminal offences relating to medical practice, clinical surgical procedures within England and Wales are typically regulated per the general criminal law, according to both statutes and case law.213 One possible consequence that a surgeon, who carries out a therapeutic, healthy limb amputation, could face is that of being charged with the ancient crime of causing maim,214 sometimes styled as mayhem.215 This crime was a common-law offence in England and Wales before the Malicious Shooting or Stabbing Act 1803,216 the first act to seek to codify offences against the person. It is also an existing statutory offence in other jurisdictions, such as Canada and multiple US states.217 Maiming is of interest because it expressly addressed the act of disabling a person and extended this purview into acts of self-harm;218 two phenomena which play a central role in the BIID treatment debate due to
211 The target of such litigation would vary depending on whether the operation is privately or publicly funded. For publicly funded operations, claims of compensation would typically be managed and paid for by NHS Resolution (formerly the NHS Litigation Authority). NHS surgeons can be sued personally, but this is rare. For private patients, who are owed a duty of care by their doctor at least equivalent to that of an NHS patient, claims would be handled by the private healthcare provider, the healthcare professional directly, or those acting on their behalf (such as a solicitors’ firm, an insurer, or medical defence organisation). 212 BBC News, (2000) ''Healthy' Amputation Rejected',
According to Russell on Crime, the types of harm that were proscribed had to take at least one of the following forms: (i) the harm had to deprive that individual of some part of the body or sense which then made them unfit to fight; (ii) the injury must enhance their ability to beg successfully; or, (iii) the act was one of castration.220 It did not prohibit acts that, while disfiguring an individual, fall outside these categories.221 Crucially, the consent of the individual being maimed did not constitute a sufficient defence for such actions because the crime was not one against the individual but rather against the crown.222
Despite the crime being supplanted in England and Wales by statutory offences, Peter D.G.
Skegg has argued that maim was never explicitly abolished and that specific procedures, when carried out under certain circumstances, could still amount to maiming.223 If credible, those who conduct elective amputations as a means of treating BIID could, theoretically, face a charge of causing maim/mayhem. I would suspect, given the aforementioned criteria listed in Russell on Crime, that healthy limb amputations could be one of these prohibited procedures as it would, given the current limitations of science and technology,224 impact an individual’s combat capacities. This applicability depends on whether the surgeries were conducted for a ‘good reason’, like a therapeutic motivation, as this could place the operation beyond the offence’s scope. 225
desire.” See: Edward Hyde East, (1803), A Treatise of the Pleas of the Crown (London: Printed by A. Strahan)., p.396. 219 See: §.3.4.3 and §.3.3.4. 220 J. W. Cecil Turner, (1964), Russell on Crime, 12th edn. (London: Stevens & Sons)., pp.624-626. 221 Mackenzie, 'Somatechnics of Medico-Legal Taxonomies: Elective Amputation and Transableism'., p.406. 222 As Eugene R. Milhizer writes, “[b]ecause mayhem is essentially an offense against the state, rather than the individual, consent by the victim will not operate as a defense. This is especially true in cases in which the harm to society is great and no good justification for inflicting the injury exists.” See: Eugene R. Milhizer (1991) 'Maiming as a Criminal Offense under Military Law', Army Lawyer, 5, pp.5- 16., p.8. 223 Peter D. G. Skegg, (1988), Law, Ethics and Medicine: Studies in Medical Law, Revised edn. (Oxford: Clarendon Press)., pp.43-46. 224 I will explore the relationship between science, technology, and disability in Chapter Eight. 225 Skegg, Law, Ethics and Medicine: Studies in Medical Law., p.45. 67
The Law Commission, in Reform of Offences against the Person,226 and Lord Mustill, in R v.
Brown,227 have indicated strongly that the common-law crime of maim has fallen into obsoletion. In R v. Brown, Lord Mustill observed that there “was no record of anyone being indicted for maim in modern times,”228 and that “[t]he 1861 [Offence Against the Person] Act says nothing about it [maim], as it must have done if Parliament had intended to perpetuate maiming as a special category of offence.”229 Thus, the continuing existence of the offence, and the ability of someone to be charged with it in England and Wales, is not an assumption one can make confidently.
Due to the dubious legal status of the offence of maim,230 I suspect it likely that if a surgeon were to face criminal repercussions for carrying out a BIID-driven, healthy limb amputation, then it would not be under this ancient offence, despite its focus on causing disability.
Instead, the criminal charge would be one of inflicting Grievous Bodily Harm (GBH) with intent, as prohibited by section 18 of the Offences Against the Person Act 1861 (OAPA 1861); the existence of which is not disputed.
Similar to the crime of maim, the possibility of a surgeon facing a section 18 charge under the OAPA 1861, for undertaking a therapeutic, healthy limb amputation, rests upon whether their actions would qualify for an exception from that criminal offence based on its therapeutic nature. While a form of this medical exception has existed informally for centuries,231 it was made explicit in R v. Brown232 when, regarding surgery, Lord Mustill wrote, “surgical treatment which requires a degree of bodily invasion well on the upper side of the critical level will nevertheless be legitimate if performed in accordance with good medical practice and with the consent of the patient.”233 This medical exception takes the actions of clinicians and surgeons that would equate to Actual Bodily Harm (ABH) or worse,
226 Law Commission, (2015) Reform of Offences Against the Person No. 361. 227 R v. Brown [1993] 1 AC 212. 228 Ibid., at 742. 229 Ibid., at 743. 230 Margaret Brazier, (2015) 'The Body in Time', Law, Innovation and Technology, 7(2), pp.161-186. 231 In 1878, Sir James Stephen noted, regarding the right to consent to bodily injury for surgical purposes, that, “I know of no authority for these propositions, but I apprehend they require none. The existence of surgery as a profession assumes their truth.” See: James Fitzjames Stephen, (1887), A Digest of the Criminal Law (Crimes and Punishments), 4th edn. (London: Macmillan)., p.148. 232 R v. Brown [1993] 1 AC 212. 233 Ibid., at 259-260. 68 which constitute ‘proper medical treatment’ or ‘good medical practice’, and places it beyond the realm of the criminal law.234
Without this exception, many of the activities which constitute medical practice would contravene the OAPA 1861. For example, a clinician performing an appendectomy would, by the highly invasive physical nature of the procedure, act in a manner that constitutes
GBH. This section 18 breach would occur even if the procedure were carried out with the explicit consent of the individual having their appendix removed as, without the exception, such consent would not be sufficient for a valid defence.235
It is around this question of ‘medical exception’ eligibility on which much of the legal ambiguity for the therapeutic amputation of healthy limbs in cases of BIID rests. This ambiguity exists because two specific criteria must be met to qualify for the category of medical exception: first is the patient’s consent;236 second is a form of public policy justification, such as patient, public, or professional policy justifications.237 However, as this chapter has discussed, the presence of these two elements in cases of BIID is debated.238
This section will look to the existing provisions within English law which, while not explicitly related to healthy limb amputation, could be utilised by those parties interested in the practice to prevent its occurrence, noting how such provisions would be employed, and the views of those opposed to such implementations. In doing so, it will also illuminate the proper role of the criminal law as it relates to medicine, patients, and the body.
Before continuing, prudence requires I note the prosecution in the USA of John Ronald
Brown, the only person, of whom I am aware, that has received a conviction relating to a case of amputation for BIID. Brown was the unlicensed surgeon who received $10,000 from
234 For medical procedures that involve less serious harm, the medical exception is not used. This is because, in these circumstances consent can be a sufficient defence to such possible offences. 235 R v. Brown [1993] 1 AC 212., at 266. 236 Where necessary, such as when a patient is unable to provide consent, an alternative to the patient’s consent, can be used. This alternative can take a variety of forms including the consent of a person in a prescribed relationship with the patient, as well as a justification originating from an appeal to ‘best interests.’ The law relating to decision-making on behalf of those individuals who lack capacity is to be found in the Mental Capacity Act 2005. 237 Lewis, 'The Medical Exception'. 238 See: §.3.2 and §.3.3, respectively. 69
Philip Bondy, whom we encountered in Section 3.3.4,239 to carry out a healthy lower limb amputation. Bondy was found dead in a hotel room in California two days after the operation as a result of gangrene, which itself was the result of a poorly performed amputation. The Superior Court of San Diego County convicted Brown of one count of second-degree murder240 and one count of the unlawful practice of medicine.241
In the US, while the exact definitions and degrees vary from state to state, second-degree murder is typically characterised as an unpremeditated killing, which results from the assault of an individual in which death was distinctly possible.242 The majority of states most clearly define it as any murder that does not fall under the qualities required for a charge of first-degree murder.243 In California, where the People v. Brown244 case was conducted, the unlawful killing of an individual is considered second-degree murder when:
1. The killing resulted from an intentional act,
2. The natural consequence[es] of the act are dangerous to human life; and
3. The act was deliberately performed with the knowledge of the danger to, and with conscious disregard for, human life.245
Brown appealed, but this was formally denied in 2001, and he was sentenced to a prison term of fifteen years to life.246 Brown’s convictions concerned negligence, incompetence, and
239 See: p.45. 240 The US legal system has a three-tiered general homicide structure (first, second, and third-degree murder) compared to the UK’s two-component structure (murder and manslaughter). A charge of second-degree murder would be roughly equivalent to that of manslaughter. 241 He also pleaded guilty to an additional seven counts of the unlawful practice of medicine relating to gender-reassignment surgeries he carried out prior to operating on Bondy. 242 Legal Information Institute, (2016) 'Second Degree Murder', Cornell Law School,
English law on the similar concept of harm.250
Whether Brown would have been charged to the extent he was for his actions had Bondy survived is an interesting question. However, for the purposes of this thesis, such speculation does not provide any informative argument or theories, nor does it strictly fall within the author’s area of expertise. Thus, such speculation will remain beyond this work’s scope.
Notably, at the time of writing this thesis, there has been no prosecution resulting from a surgeon carrying out a successful healthy limb amputation on a fully consenting adult, neither domestically nor abroad. This lack of domestic conviction could be because, as Smith himself notes and as this thesis will explore:
[T]he legal systems in the UK are based on precedent and, so far, there is no precedent for this particular situation. Prosecution is an expensive option and it is difficult to see how prosecution could help either the community or the individual concerned.251
A lack of precedent does not, however, guarantee that a case of healthy limb amputation, in an instance of BIID, will not be brought before the courts in the future, nor that Smith
247 I would suspect that, had Brown operated on Bondy in England, under similar circumstances, he would have been charged with involuntary manslaughter because his actions were grossly negligent given the risk of death. 248 Section 12022.7, subdivision (c) of the California Penal Code. 249 Section 12022.7, subdivision (f) of the California Penal Code. 250 See: Chapter Eight. 251 Smith, 'Body Integrity Identity Disorder: A Problem of Perception?'., p.87, emphasis added. 71 himself is safe from prosecution. Prudence requires an exploration of what influences and factors would be at play if such a case were to be brought before the courts. After all, being proactive rather than reactive in the evaluation and analysis of potential cases with such high ethical, jurisprudential, and personal costs, is typically wise.
3.6.1 LEGAL ACTION AGAINST A SURGEON PERFORMING AN
AMPUTATION
As discussed, the question of whether those with BIID can give autonomous consent to an elective amputation is one of the most central questions relating to the ethical permissibility of the practice.252 Without consent, such an operation would not qualify for the medical exception.253 However, autonomy is not only an ethical concept but also a legal one, and this question can also be understood through a legal lens; specifically, relating to the Mental
Capacity Act 2005 (MCA 2005).
As the desire to have a healthy limb amputation is alien to most individuals, many of us would have a gut reaction resembling that of Caplan who expressed, “it's meshugeneh - absolutely nuts. It's absolute, utter lunacy to go along with a request to maim somebody.”254
This view should be understood as being informed by Caplan’s doubts regarding whether people with BIID possess the capacity required to consent to such a procedure. Indeed, he goes onto question “whether sufferers are competent to make the decision when they’re running around saying ‘chop my leg off’.”255 However, merely because one makes a decision which the majority of individuals would not choose, according to section 1(4) of the MCA
2005, that is not equivalent to that person lacking capacity; even when they have a mental disorder or their choice is as alien to us as healthy limb amputation.
This principle was illustrated in the case of Re C,256 which concerned the mental capacity of a chronically paranoid schizophrenic to refuse amputation of a gangrenous foot against
252 See: §.3.2. 253 Indeed, without consent, any form of physical touching is, at minimum, common assault. See: Criminal Justice Act 1988, section 39. 254 Dotinga, 'Out on a Limb'. 255 Ibid. 256 Re C [1994] 1 WLR 290; [1994] 1 All ER 819. 72 medical advice, somewhat mirroring the cases of BIID with which this thesis is concerned. In
Re C,257 it was decided that:
It had not been established that the patient's general capacity was so impaired by schizophrenia to render him incapable of understanding the nature, purpose and effects of the treatment advised and consequently his right of self-determination had not been displaced.258
This case came to embody the concept, which would later be codified in section 1(4) of the
MCA 2005, that to override an individual’s wishes regarding their medical treatment, it must be demonstrated that their overall capacity has been compromised. Re C’s259 refusal to consent to the amputation of his compromised limb could not be overridden solely because of his schizophrenic status, nor because those administering his care struggled to understand why he would make such a decision.
The MCA 2005 states, “a person must be assumed to have capacity unless it is established that he lacks capacity,”260 and that:
A person lacks capacity in relation to a matter if at the material time he is unable to make a decision for himself in relation to the matter because of an impairment of, or a disturbance in the functioning of, the mind or brain.261
The MCA 2005 takes a pragmatic approach to test a lack of capacity and, in section 3(1), states that a person is unable to make a decision themselves if they are unable:
…(a) to understand the information relevant to the decision, (b) to retain that information, (c) to use or weigh that information as part of the process of making the decision, or (d) to communicate his decision (whether by talking, using sign language or any other means.262
From this point, the question is whether, as a consequence of having BIID, those individuals are unable to provide autonomous consent as a result of being unable to exercise points (a)
257 Ibid. 258 Ibid., para 295. 259 Ibid. 260 MCA 2005, §.1(2). 261 MCA 2005, §.2(1). 262 MCA 2005, §.3(1). 73 through (d) in the MCA 2005, as argued by Müller,263 Caplan,264 Patrone,265 as well as Kellie
Williamson.266 If so, and a surgeon amputates regardless, then they would do so without consent which is necessary for a procedure to qualify for the medical exception, in addition to physical contact of any kind.267 Consequentially, without the cover of the medical exception, the surgeon could leave themselves open to prosecution under section 18 of the
OAPA 1861.268
The OAPA 1861 came into force with the purpose of consolidating provisions related to various earlier statutes into a single Act. One of these consolidated provisions concerns the shooting or attempting to shoot or wound with intent to do GBH; it is this offence that has particular relevance regarding elective amputation. Theoretically, legal action could be taken against a surgeon for carrying out a healthy limb amputation, even with that person’s consent, as it could be considered an offence contrary to section 18, which states:
Whosoever shall unlawfully and maliciously by any means whatsoever wound or cause any grievous bodily harm to any person, with intent, to do some grievous bodily harm to any person, or with intent to resist or prevent the lawful apprehension or detainer of any person, shall be guilty of felony, and being convicted thereof shall be liable to be kept in penal servitude for life.269
A surgeon who goes ahead and amputates a healthy limb could be considered to cause GBH with intent to their patient as the consequences of the procedure are significant and, given current medical and technological restrictions, irreversible.270 That surgeon could then be
263 Müller, 'Body Integrity Identity Disorder (BIID)—Is the Amputation of Healthy Limbs Ethically Justified?'. 264 Dotinga, 'Out on a Limb'. 265 Patrone, 'Disfigured Anatomies and Imperfect Analogies: Body Integrity Identity Disorder and the Supposed Right to Self-Demanded Amputation of Healthy Body Parts'. 266 Kellie Williamson, (2010) 'Healthy Limb Amputation, Bioethics and Patient Autonomy', Emergent Australasian Philosophers, 3(1), pp.1-21. 267 Criminal Justice Act 1988., §.18. 268 A surgeon could argue that they carried out the surgery with the ‘best interests’ of the patient in mind. However, given the debated nature of the practice of healthy limb amputation, without a strong case for the capacity of those with BIID to give consent, I expect a surgeon would leave themselves in an extremely vulnerable position if they relied on this argument. 269 Ibid., §.18. 270 As mentioned, the relationship between technology and the consequences of amputation will be discussed later in Chapter Seven. 74 prosecuted even though a patient may have very well consented to the action. Examples of similar such prosecutions, in which consent to what can be classed as physical harm was considered insufficient, can most notably found in the cases of R v. Brown271 and R v. BM.272
In each case, the appellants were successfully prosecuted despite the absence of a complaint from the supposed injured parties.273
3.6.2 R V. BROWN
In R v. Brown,274 five individuals were convicted of ABH and wounding during consensual, homosexual, sadomasochistic activities. The acts, which occurred over a ten-year period, included branding, burning, hitting of the genitals, whipping, caning, biting, stinging with nettles, and the nailing to a wooden board of various body parts. These activities were recorded, and copies distributed to those present. The injuries were relatively minor, their infliction caused no permanent damage, and no medical treatment was strictly necessary.
Upon being charged with several counts of unlawful wounding/inflicting GBH, and assault occasioning ABH, contrary to sections 20 and 47 of the OAPA 1861, respectively, the appellants initially pleaded not guilty. At trial, Judge Rant QC ruled that “the infliction of bodily harm without good reason is unlawful and that the consent of the victim is irrelevant.”275 The defendants subsequently altered their pleas, admitting guilt for some section 20, and all section 47, offences.
They then turned to the Court of Appeal on the belief that their consent was relevant to the case at hand and that the trial judge’s ruling was misguided. When the Court of Appeal rejected their plea,276 they then took their case to the House of Lords. The House of Lords dismissed their appeal by three (Lords Templeman, Jauncey, and Lowry) to two (Lords
271 R v. Brown [1993] 1 AC 212. 272 R v. BM [2018] EWCA Crim 560. 273 Richard Green, (2001) '(Serious) Sadomasochism: A Protected Right of Privacy?', Archives of Sexual Behavior, 30(5), pp.543-550. 274 R v. Brown [1993] 1 AC 212. 275 Ibid. 276 While the charges were upheld, their sentences were reduced in length. See: Lois Bibbings and Peter Alldridge, (1993) 'Sexual Expression, Body Alteration, and the Defence of Consent', Journal of Law and Society, 20(3), pp.356-370., p.357. 75
Mustill and Slynn). The Law Lords agreed with the lower courts that the prosecution did not need to prove a lack of consent to secure a conviction, stating that:
[A]lthough a prosecutor had to prove lack of consent in order to secure a conviction for mere assault, it was not in the public interest that a person should wound or cause actual bodily harm to another for no good reason and, without such a reason, the victim's consent afforded no defence to a charge under ss.20 or 47.277
Lords Templeman, Jauncey, and Lowry started their analysis from the premise that it is prima facie unlawful to cause ABH or worse. They did, however, acknowledge a series of exceptions from this general rule of which some are based upon consent; medical treatment, and thus surgical treatment, being one.278 The test then, according to the majority ruling, is to see whether there is a ‘good reason’ to justify an exception from the general rule that it is impermissible to cause serious harm to another, and thus, an exception from criminal liability. This rationale mirrored the already mentioned pragmatic justification for non- prosecution for maiming based upon medical reasoning, as noted by Sir James Stephen.279
In R v. Brown,280 the satisfaction of sadomasochistic desires does not pass this test, or, as
Marianne Giles phrases it, “[t]he practicality of paternalism triumphs over the theory of individual freedom.”281 Indeed, the majority approach relegated consent, making it a potential component of a broader, policy-driven consideration of whether causing bodily harm is unlawful or not. This approach contrasts the minority approach of Lords Mustill and Lowry, who emphasised consent as a means of legitimising acts that cause harm.282 A similar, paternalistic line of reasoning used by the R v. Brown283 majority was also employed in R v. BM.284 However, while the former concerned section 20 and 47 breaches, the latter focused squarely on offences according to section 18 of the OAPA 1861.
277 R v. Brown [1993] 1 AC 212. 278 The other being tattooing, piercing, ritual circumcision, the chastisement of children, sporting activities, and religious modification. 279 See: §.3.6. 280 R v. Brown [1993] 1 AC 212. 281 Marianne Giles, (1994) 'R V Brown: Consensual Harm and the Public Interest', The Modern Law Review, 57(1), pp.101-111., p.110. 282 See: ibid. 283 R v. Brown [1993] 1 AC 212. 284 R v. BM [2018] EWCA Crim 560. 76
3.6.3 R V. BM
Brendan McCarthy was a Wolverhampton based, registered tattooist and body piercer.
Between 2012 and 2015, three separate clients paid McCarthy for body modification services.285 The first customer wanted their outer ear removed (2015), the second requested the removal of their nipple (2012), and the third wanted McCarthy to divide their tongue down the middle, thus resembling that of a reptile (2012).286 Each of these procedures was carried out successfully, without anaesthetic, in the commercial premises from which
McCarthy operated. As in R v. Brown,287 each customer had freely given their consent to the physical harm which the activity would cause.288
McCarthy was subsequently charged with three counts of wounding with intent to cause
GBH, contravening section 18 of the OAPA 1861. At a preparatory hearing, Judge Nawaz determined, in a written decision, that consent could not provide a defence for McCarthy’s actions as body modification was not akin to any of the existing exceptions from the criminal law; a decision that was based on the precedent created by R v. Brown.289
McCarthy challenged this at the Court of Appeal, arguing that: (i) while R v. Brown290 had been correctly decided, public policy justifications should not invalidate the consent of his customers; (ii) that the R v. Brown291 case had a central theme of sadomasochism while
McCarthy’s conduct protected and enhanced personal autonomy; and, (iii) that the procedures carried out were of a similar enough nature to be analogous with tattooing and
285 McCarthy was not registered to provide these services. However, before this ruling, there were no qualifications nor registration schemes available for those providing body modification services. Thus, he could not be registered. 286 These acts would not, according to Skegg, amount to maiming as they merely disfigure and do not disable. Indeed, he writes, “it has also long been accepted that it is not maim to cut off an ear or nose, as such injuries are said not to affect a man’s capacity for fighting.” See: Skegg, Law, Ethics and Medicine: Studies in Medical Law., p.44. 287 R v. Brown [1993] 1 AC 212. 288 R v. BM [2018] EWCA Crim 560., at 1. A consent form was signed for the ear removal, but not for the tongue splitting nor nipple removal, for which verbal consent was given. However, the prosecution, in this case, accepted that consent had been provided by all three, or at least that it was not possible to prove that this was not the case. 289 R v. Brown [1993] 1 AC 212. 290 Ibid. 291 Ibid. 77 piercing, for which exceptions to the OAPA 1861 do exist.292 As a culmination of these points, McCarthy argued, the procedures which he carried out should be exempt from the criminal law of assault.293
The decision that body modification was not an exception to the OAPA 1861 was upheld, and McCarthy’s appeal dismissed. The conclusion that the Court of Appeal judge Lord
Chief Justice Burnett reached was founded upon the principle that body modification, of the types that McCarthy had carried out, were not akin to tattooing and piercing. Instead, they were closer in nature to surgery but still dissimilar enough to prohibit an extension of the exception from criminal charges based on the medical exception.294 This dissimilarity was supported by expert testimony.295 Lord Chief Justice Burnett also rejected the possibility of creating any new exceptions to the general rule of bodily harm, which body modification could occupy, writing that “[n]ew exceptions should not be recognised on a case-by-case basis, save perhaps where there is a close analogy with an existing exception to the general rule established in R v. Brown.”296 It was argued instead that new categories of exception should come from Parliament.297
McCarthy subsequently pleaded guilty to three counts of wounding with intent to cause
GBH, receiving a jail sentence of three years and four months. Echoing the paternalistic inclinations demonstrated in R v. Brown,298 Lord Chief Justice Burnett ruled that:
[W]e can see no good reason why body modification should be placed in a special category of exemption from the general rule that the consent of an individual to injury provides no defence to the person who inflicts that injury if the violence causes actual bodily harm or more serious injury.299
This judgement rests upon the judge’s presupposition that body modification is not analogous to tattooing, piercing, or other forms of body adornment; a belief for which a
292 R v. BM [2018] EWCA Crim 560., at 34. 293 Ibid., at 35. 294 Ibid., at 37. 295 Ibid., at 13. 296 Ibid., at 41. 297 Ibid., at 45. 298 R v. Brown [1993] 1 AC 212. 299 R v. BM [2018] EWCA Crim 560., at 45. 78 supporting rationale is distinctly absent.300 As a consequence of this assumption, and by explicitly analogising body modifications with surgery, the practice is invariably medicalised, making clinicians the gatekeepers for those seeking such modifications.301
The R v. BM302 ruling demonstrates a level of inconsistency regarding the forms of accepted body modification, many of which have not only existed for centuries,303 but are also becoming increasingly popular.304 It is unclear as to why it is acceptable to insert non-organic items into someone’s body at their request, even when these are subdermal, yet the voluntary removal of biomatter for aesthetic purposes is prohibited.305 As the R v. BM case demonstrates, this prohibition even extends to bodily alterations which do not involve the removal of organic matter, as was the case with the tongue splitting.
Even the way body modification is defined in this case is problematic. The practice is characterised as “the removal or mutilation of parts of the body;”306 a definition that not only has ill-defined boundaries but is also loaded with paternalistic sentiment and negative normative implications. Mutilation implies destruction, deformation, degradation, and corruption. To use this term is to make a negative judgement about the way some individuals choose to shape, alter, and inhabit their embodied existences. It is a judgement that is out of sync with the attitudes of substantial subsections of contemporary society307
300 Ibid., at 42. 301 Samuel Walker explores the reasoning for this shift to medicalisation and argues that it may well be informed by a perceived connection between the desire for body modification and the presence of mental illness. As such, those seeking such alterations need to be protected from their misjudged and ill-formed desires. See: Samuel Walker, (2019) 'R V BM: Errors in the Judicial Interpretation of Body Modification', The Journal of Criminal Law, 83(4), pp.245-257. 302 R v. BM [2018] EWCA Crim 560. 303 Marina Perper et al., (2017) 'Modifications of Body Surface: Piercings, Tattoos, and Scarification', International Journal of Dermatology, 56(3), pp.351-353. 304 Royal Society for Public Health, (2019) Skins and Needles. 305 It should be noted that despite the ambiguity and ad hoc nature of body modification adjacent legislation, there is at least one form of physical intervention that is expressly forbidden by the criminal law, that being female genital mutilation. Since the Prohibition of Female Circumcision Act 1985, it has been a specific criminal offence across the UK. This prohibition was modernised by the passing of the Female Genital Mutilation Act 2003, which supplanted the 1985 Act in England, Wales, and Northern Ireland, and the Prohibition of Female Genital Mutilation (Scotland) Act 2005, which replaced the 1985 Act in Scotland. 306 R v. BM [2018] EWCA Crim 560., at 42. 307 Derek Roberts, (2015) 'Modified People: Indicators of a Body Modification Subculture in a Post- Subculture World', Sociology, 49(6), pp.1096-1112. 79 and one that relies upon the appeal judge’s conceptions about what represents appropriate and culturally acceptable body alterations.
By stressing the significance of the harm caused, as opposed to the harm the customers consented to, the Crown overrode the individual’s decisions as to what could, or could not, be done to their bodies. Indeed, the autonomous consent given by McCarthy’s customers was eclipsed by discussions regarding the protection of theoretical, vulnerable persons seeking such modifications.308 As put by Andrew Beetham, “[t]his cause…highlights that our body is not really our body.”309
3.6.4 R V. WILSON
A potential counter-case to the paternalistic inclinations of the R v. Brown310 and R v. BM311 rulings comes in the form of R v. Wilson.312 This case concerned a husband who, at the request of his wife, branded his initials onto her buttocks using a scolding knife. The husband was charged with causing ABH under section 47 of the OAPA 1861. At the close of the case, on a submission of no case to answer, the trial judge instructed the jury to convict, despite the husband receiving the wife’s consent to carry out the act. The defence was not called to give evidence, nor did they make any submission to the jury, and the appellant was convicted.
The case was then brought to the Court of Appeal. Wilson argued that the trial judge was incorrect in binding his decision to the precedent set in R v. Brown.313 He argued, in the present case, consent was relevant to the legality of the harm caused. The appeal was allowed and, after successfully arguing that his actions were no more dangerous nor painful than tattooing (which, as has been discussed, can be carried out with the consent of that individual without causing an offence under the OAPA 1861), it was ruled that it was not in
308 R v. BM [2018] EWCA Crim 560., at 39 and 43. 309 Andrew Beetham, (2018) 'Body Modification: A Case of Modern Maiming?: R V BM [2018] EWCA Crim 560; [2018] WLR (D) 187', The Journal of Criminal Law, 82(3), pp.206-208., p.207, emphasis in original. 310 R v. Brown [1993] 1 AC 212. 311 R v. BM [2018] EWCA Crim 560. 312 R v. Wilson [1996] 4 LRC 747. 313 R v. Brown [1993] 1 AC 212. 80 the public interest for the criminal law to become involved in the consensual activities of a married couple, and that:
…far from wishing to cause injury to his wife, the appellant's desire was to assist her in what she regarded as the acquisition of a desirable piece of personal adornment, perhaps in this day and age no less understandable than the piercing of nostrils or even tongues for the purposes of inserting decorative jewellery.314
Thus, the conviction was quashed because the act did not fall under the purview of section
47 of the OAPA 1861.
Those with BIID may make attempts to draw comparisons between R v. Wilson315 and their desire, arguing that their primary desire is not to cause/receive harm but to gain suitably qualified assistance in obtaining a desirable body modification. This argument of elective amputation as a form of extreme body modification and personal expression has been touched upon by Sullivan316 and Brosig et al.317 However, such an argument would fundamentally rest upon the amputation being seen as falling under section 47 of the OAPA
1861 and, given the severity of amputation, this would seem unlikely in the extreme. What would be more likely to occur, as already argued, is that a surgeon carrying out an amputation would be charged according to section 18 of the OAPA 1861, in which case an appeal to a similarity with tattooing and piercing would cease to be relevant. Indeed, if the removal of the outer ear or a nipple were deemed to be closer to surgery than tattooing or piercing, as it was in R v. BM,318 it would seem a safe bet to assume that the amputation of a limb would also be considered in the same way.
314 R v. Wilson [1996] 4 LRC 747., p.50. 315 Ibid. 316 Nikki Sullivan, (2009) 'Queering the Somatechnics of BIID' in Aglaja Stirn, Aylin Thiel and Silvia Oddo (eds), Body Integrity Identity Disorder: Psychological, Neurobiological, Ethical, and Legal Aspects, 1st edn, (Lengerich: Pabst Science Publishers). 317 Burkhard Brosig et al., (2009), Body Integrity Identity Disorder: Psychological, Neurobiological, Ethical, and Legal Aspects (Lengerich: Pabst Science Publishers). 318 R v. BM [2018] EWCA Crim 560. 81
In both R v. Brown319 and R v. BM,320 a key term is repeated in the justification of the rulings; that term is ‘good reason’. The extreme body modifications in R v. BM321 and the carrying out of sadomasochist activities in R v. Brown322 did not, apparently, constitute a good reason to justify the physical harm caused; ergo, there was no public policy justification for them to be excluded from the OAPA 1861 in the same way that tattooing, piercing, and medical treatment are. Consequentially, they were deemed not eligible for the exceptions from the general rule of the criminal law of assault, as laid out in R v. Brown;323 those being based, in part, on so-called ‘good reasons.’324
Whether elective amputation in cases of BIID has a public policy backing, regarding being carried out for a good reason, is linked to the effectiveness of the practice and the availability of other forms of treatment for the disorder. This would be the same for a criminal prosecution basis as such a prosecution “would have to rest on advancing expert evidence that such surgery was improper.”325 Absent such an evidential foundation upon which to claim impropriety, the appropriateness or lack thereof of healthy limb amputation as a therapeutic option in cases of BIID, and therefore whether the surgeries possess the qualities of ‘proper medical treatment’ or ‘good reason’, is uncertain.
Whether the surgery can be considered lawful or not rests upon the evidence that
(dis)proves its effectiveness as a therapeutic measure. If it is beneficial, then it can be argued to have a public policy justification. However, without there being clear indications as to whether surgeons carrying out such surgeries would be prosecuted or not, we again run into a catch-22 regarding the gathering of medical data. Namely, how does one gather the required data to prove that such an intervention could be considered legal without exposing
319 R v. Brown [1993] 1 AC 212. 320 R v. BM [2018] EWCA Crim 560. 321 Ibid. 322 R v. Brown [1993] 1 AC 212. 323 Ibid. 324 An additional criticism comes from the selection of the category of exceptions which, as has been noted, are ad hoc at best. See: Beetham, 'Body Modification: A Case of Modern Maiming?: R V BM [2018] EWCA Crim 560; [2018] WLR (D) 187'., p.208; R v. BM [2018] EWCA Crim 560., at 24 and 38. 325 Smith, 'Body Integrity Identity Disorder: A Problem of Perception?'., p.83. 82 oneself to the risk of being charged with causing GBH with intent? What comes first, the data or the exception from criminal prosecution?326
3.7 CONCLUSIONS
Within this chapter, the existing arguments regarding the ethical efficacy and legality of healthy limb amputation in cases of BIID were outlined and explored. I did this to provide a backdrop for the discussion which will feature later in this thesis, as well as assisting in the identification of areas of this debate that are underdeveloped or open to criticism.
In Section 3.2, I provided an account of the arguments concerning the ability of those with
BIID to provide autonomous consent. I focused on the perceived capacity inhibiting quality of BIID, the result of which being that only those lacking the mental faculties required for informed consent would ever desire such an operation in the first place. I also presented an account of the perceived inability of those who do not currently have an impairment to appreciate the consequences of having a healthy limb amputated fully.
Following this, existing rebuttals to these arguments in the academic literature were presented, demonstrating that such scepticism regarding the capacity of those with BIID is unconvincing. This lack of persuasiveness is because to desire the unusual is not, in itself, an indication of a lack of capacity to consent, but rather, merely an expression of a personalised ambition or desire; one that can, while being unique, still be rational. Additionally, the argument that only those with full insight into the consequences of their choices can be considered an expression of capacity was demonstrated as ill-founded. This was done concerning both the setting of an unreasonably high bar for capacity based on an ill- informed caricature of those with BIID, as well as the hypocrisy regarding the permissibility of multiple other clinical interventions, both necessary and unnecessary, to take place.
I examined, in Section 3.3, the potential, or lack thereof, for such procedures to provide a beneficial effect for people with BIID. I broke this down into four subsections: (i) overall effectiveness; (ii) the sustainability of the therapeutic effect; (iii) the existence of a less drastic intervention; and, (iv) the potential for such a surgery to prevent a future worse outcome.
The existing arguments in each of these categories were outlined, and I demonstrated that
326 See: §.3.3.1. 83 according to the available empirical data regarding BIID: (i) healthy limb amputation could be an effective treatment option; (ii) the beneficial effect of such surgeries is long-lasting; (iii) at the moment of writing, there exists no less drastic effective treatment option, and; (iv) that the argument appealing to harm prevention is lacking in persuasive power.
While in Section 3.3, I was concerned with beneficence, in Section 3.4, I examined appeals to the principle of nonmaleficence. This examination was done by exploring the existing arguments concerning: (i) the general risks of surgery; (ii) the destruction of healthy tissue; and, crucial for later in this thesis, (iii) the assumed generation of disability. The way these arguments were employed by those both in favour and against therapeutic, healthy limb amputation, was given. This account was provided alongside counterarguments which indicated that many of the assumed harms of amputation are either common to many surgical operations or based upon unsupported assumptions regarding the non-particular harm of disability itself.
In Section 3.5, I explored the impact that the principle of justice has on the ethical evaluation of healthy limb amputation. Specifically, I regarded the financial and social ramifications of permitting such amputations. In particular, the question of who would pay for not only the amputation itself but also the follow-up costs and, ultimately, the supposed negative societal impact of having an additional citizen who requires further social adjustments to compensate for their impairment was explored. Existing rebuttals to this stance were illustrated that argue: (i) that as such amputations are an effective treatment, so the assumed costs are justifiable; (ii) that planned amputations are less risky and costly than emergency ones; and, (iii) that according to the empirical data available, those who receive elective amputations as a means of treating BIID are more productive after surgery than before.
Finally, in this section, I moved away from the philosophical concerns of therapeutic, healthy limb amputation in cases of BIID, and provided an account of the legality of such procedures. In particular, this account explored the likely ramifications for a surgeon who carried out a healthy limb amputation and whether they would be afforded protection from the offence of causing GBH with intent, in line with the medical exception as outlined in R v.
84
Brown.327 As illustrated, to qualify, a procedure must be carried out with some form of public policy justification in combination with a form of valid consent. According to opponents to the procedure, consent for a healthy limb amputation, driven by BIID, cannot be valid.
Consequentially, the procedure cannot be considered eligible for the medical exception. Yet, as alluded to in Section 3.2, this assumption is based upon ill-founded judgments concerning what autonomous consent looks like and for what procedures consent can be given.
3.7.1 REFLECTIONS: NARROWING THE FOCUS
As can be seen from this chapter’s conclusions, the ethics of the use of healthy limb amputation as a means of treating cases of BIID draws upon a multitude of important ethical and jurisprudential questions. Such topics include, but are not limited to: (i) the necessary and sufficient requirements for autonomous consent as well as what can and cannot be consented to; (ii) how benefit and harm are measured and even more foundationally how they are conceptualised; (iii) what is the value that we afford the human body and deviations from the statistically ‘normal’ form; as well as, (iv) what burdens should society be expected to bear and do individuals have a moral obligation to remain ‘healthy’.
Because of the broad nature of the existing literature surrounding what is admittedly a somewhat narrow subject, it is apparent that a focused approach is required regarding the ethics and legality of healthy limb amputation in cases of BIID when it comes to the articles that comprise Part Two of this thesis. A failure to appropriately target this focus would result in would surely be a fascinating yet dispersive and eclectic collection of works. A choice in the restriction of scope is always a choice. However, I have found it essential to focus on what I think is the fundamental premise for many of the arguments featured in this thesis.
Throughout the rest of this thesis then, the majority of the focus will centre upon the perceived desirability, or lack thereof, concerning impairments, as well as how such a valuation affects the ethical considerations of procedures which, according to most, invariably led to one becoming disabled. I will not be paying an abundance of attention to
327 R v. Brown [1993] 1 AC 212. 85 questions relating to the ability of those with BIID to consent to elective amputations, nor to questions regarding the economics of the provision of assistive technologies.
Part of the reasoning for this choice is a personal preference. I find the analysis of questions relating to the ethics of healthy limb amputation to be far more fruitful when considered via a lens of disability theory and normative philosophy, than by an economic approach that centres upon how such amputations will be paid for and the potential financial costs.
Additionally, while I value normative discussions that attempt to discover an independent moral law born from impersonal harms, I prefer to ground my discussion in the lived experiences of those who are affected by such decisions. In other words, when attempting to understand whether healthy limb amputation is ethical or not, and thus have an impact on whether it is legal or not, I believe the voices of those with BIID should take precedence over a detached and depersonalised moral and legal theory.328
Another reason for this approach is that this thesis seeks to disrupt the fundamental assumptions at play regarding the relationship between the ‘healthy’ and ‘impaired’ bodily forms. In particular, the assumption that the healthy body is categorically superior to the impaired body regardless of context or personal preference. This assumption underpins the vast swaths of the existing literature concerning BIID and yet is something which, as this thesis seeks to demonstrate, is mostly unexplored and unsupported. Thus, it would appear that if the purpose of this thesis is to create a single body of work composed from smaller pieces, linked together by a larger narrative, an inquiry into the person affecting harms and benefits of healthy limb amputation in cases of BIID is the most appropriate way forward.
Consequentially, in pursuit of the overarching question, which is to be addressed in this thesis — can healthy limb amputation in cases of BIID be an ethically and legally valid therapeutic option? — I have decided to focus on the following four questions.
328 It must be acknowledge, however, that the quantity and quality of these voices in the academic literature is noticeably thin. As mentioned in §3.1, there is a distinct lack of empirical research into BIID, and this includes the first-hand experiences of those with the condition both pre- and post- amputation. Thus, while the available research does indicate positive outcomes for BIID sufferers after surgery, more research is needed to shore up this claim. 86
3.7.2 THESIS QUESTIONS
3.7.2.1 Is the statistically common bodily form the only one which can claim the title of the ‘ideal’ healthy body, or can other, atypical constructions make similar claims, thereby transforming health from an unobtainable perfection to a relative goal? (Article One,
Chapter Five)
Throughout this chapter, it became apparent that when discussing the ethics of therapeutic, healthy limb amputation, many of those opposed to the practice believed that to give someone an impairment, such as a lower limb amputation, was to inflict harm on that individual as the impaired form is one that is inherently pathological and stands in opposition to the healthy body.329 As such, procedures that lead an individual to move from a healthy form to a pathological one are incompatible with the overall goal of medical practice, that being the restoration and maintenance of the healthy body.
With this in mind, the first article of this thesis interrogates this assumption. It challenges the assumed nature of the healthy body and the consequences of amputation. More specifically, it draws into question the assumption that one cannot be considered to be healthy after an amputation in the same way that the same person would have been before, all other things being equal; a supposition that is drawn by opponents and proponents of healthy limb amputation alike. This critique is done because such an assumption informs most of the subsequent discussion regarding the ethics of healthy limb amputation and is yet philosophically and critically unexplored.
3.7.2.2 Are the prima facie harms associated with disability inherent to the post- amputation form, or can impairment and disability be separated, and what impact would this separation have on the ethics of therapeutic, healthy limb amputation? (Article Two,
Chapter Six)
Through the course of this chapter, it was demonstrated that once again, on both sides of the elective amputation debate, there is a common assumption that a healthy limb amputation invariably leads one to become impaired, or in other words, disabled.330 Those opposed to elective amputations argue that this imparting of a disability on a previously non-impaired
329 See: §.3.4.3. 330 See: §.3.3 and §.3.4. 87 person is categorically unethical and there can be no benefits that justify such a procedure.331
In contrast, those who support amputation argue that the mental relief from suffering outweighs the harms presented by a transition, and subsequently living, as a disabled person.332
While arguments that contain an echo of a Boorseian bio-statistical theory333 are well represented within the existing literature, little focus has been drawn to challenging or even interrogating this assumption. This inattention is something which I found unusual and, as a result of this lack of academic exploration, has led to a significant gap within the literature.
Namely, what happens to the ethics of healthy limb amputation if you employ normative rather than naturalistic accounts of disability, ones which equate impairment, not with disability, but instead, separate the two? In short, what happens when one begins to employ disability theory in the BIID debate? This deconstruction is the purpose of Article Two.
3.7.2.3 What impact will advancements in assistive technologies, such as artificial limbs, have on the ethical viability of healthy limb amputations? (Article Three, Chapter Seven)
During this chapter, a significant amount of space has been devoted to the philosophical and legal evaluation of healthy limb amputation in cases of BIID within the existing literature.
However, one aspect of this evaluation that has been noticeably absent is the role that science and technology play in the delineation of what procedures and interventions can be understood as being ethically viable. This perspective is vital in cases of elective amputation for BIID as the level of disability one experiences post-amputation is inextricably linked to the assistive devices one can employ as a means of navigating the world in one’s new bodily format.
331 Müller, 'Body Integrity Identity Disorder (BIID)—Is the Amputation of Healthy Limbs Ethically Justified?'; Müller, 'Amputee Envy'; Müller, 'BIID – under Which Circumstances Would Be Amputations of Healthy Limbs Ethically Justified'; Smith, 'Should Doctors Amputate Healthy Limbs?'. 332 Bayne and Levy, 'Amputees by Choice: Body Integrity Identity Disorder and the Ethics of Amputation'. Sullivan, 'Body Integrity Identity Disorder (BIID) and the Matter of Ethics'. 333 Christopher Boorse, (1997) 'A Rebuttal on Health' in James M. Humber and Rober F. Almeder (eds), What Is Disease?, 1st edn, (Totowa: Humana Press); Christopher Boorse, (2014) 'A Second Rebuttal on Health', The Journal of Medicine and Philosophy: A Forum for Bioethics and Philosophy of Medicine, 39(6), pp.683-724. 88
Following on from the previous research question, which seeks to argue for the potential of the separation of impairment and disability, this third article demonstrates how such a separation could be achieved in material terms. It explores the rapidly developing field of neuroprosthetics, seeking to explore what impact the existence of an artificial limb with the functionality of a biological prosthesis would have on the ethical viability of healthy limb amputation in cases of BIID. In short, is one disabled merely by possessing just one biological leg even if that person has access to an artificial limb of equivalent functionality?
This paper functions, in part, as a means of meeting critics of the practice of amputation in cases of BIID halfway. Its function is not to look towards technology as a solution to the problem of disability which is created through elective amputation. Rather, it works to illustrate that the supposed dividing line between (non-)disability is not one fixed in biology, but rather, is subject is a slew of other factors.
3.7.2.4 What does it mean to say that one has caused harm in the context of the offence of
GBH, and would a surgeon providing a healthy limb amputation commit such an offence? (Article Four, Chapter Eight)
In Section 3.6 of this chapter, the existing literature exploring the possible legal ramifications for a surgeon carrying out a healthy limb amputation were explored. This existing literature took for granted that a surgeon providing such an operation could potentially be acting contrary to section 18 of the OAPA 1861. These arguments then sought to understand whether such a surgeon would be eligible for the medical exemption as laid out in R v.
Brown,334 and thus not be guilty of the offence. As such, the critical question for the existing literature centres upon this eligibility for exemption. Consequentially, what is clear from such an approach is the assumed nature of the offence; namely that harm has been committed, and it is clear what the nature of this harm is.
This assumption is one that I found highly suspect and, as such, is something that is explored in the final paper of this thesis. Specifically, Article Four explores the metaphysics and ontological nature of harm as understood according to the tort of GBH. It goes on to question whether a surgeon providing a therapeutic, healthy limb amputation does ipso facto
334 R v. Brown [1993] 1 AC 212. 89 harm their patient in terms beyond merely causing physical damage to the biological components of their patient, something which every surgeon does when they carry out an operation. To put it another way, what does harm mean in and of itself in the context of the law?
90
CHAPTER IV
PHILOSOPHICAL AND LEGAL APPROACH
4.1 INTRODUCTION
In my forthcoming thesis articles, to address the questions outlined at the end of the previous chapter, several prior justificatory, contextual, and methodological points will first need addressing. Relevant to all four of the thesis articles, for example, is the question regarding one’s relationship with their body and the right of self-ownership and self- determination. Absent an answer or at least a clear position to such a question, it becomes impractical, and potentially impossible, to sensibly discuss the boundaries of what one can consent to be done to their body, and what the state can reasonably allow and justifiably prohibit. As such, within this section, I will outline the approaches taken by the four articles regarding such framing.
4.2 WHY HEALTH, DISABILITY, AND NEUROPROSTHETICS?
The subject of healthy limb amputation in cases of BIID is, as I hope I have indicated, one overflowing with engaging philosophical, bioethical, and legal conundrums. Thus, deciding to focus upon the issues of health, disability, and the impact of neuroprosthetics concerning the practice, was no small feat.
The first and probably least exciting reason why I have chosen to take this approach is a pragmatic one. Given that this piece of work, while being constructed from individual articles, has, at its core, an extended academic narrative running throughout, it makes sense that these individual papers share a similar focus on a particular aspect of the discussion, rather than branching off into several discordant topics concerning the practice of healthy limb amputation.
Secondly, I have focused on the concepts of health, disability, and neuroprosthetics because this is where there is a literature gap. While several other philosophical and bioethical questions relating to the moral permissibility of healthy limb amputation in cases of BIID have been explored, such as the focus on autonomy, there has been an absence of developed and constructive criticism concerning the ableist foundations upon which the frequent criticisms of the practice are built. This dearth is most poignant when it comes to discussions
91 regarding the value afforded disability and the conception of what a healthy body ‘looks like’. By focusing on these concepts, this thesis moves the moral discussion away from the well-trodden debate surrounding autonomy and into new areas which will not only provide fruitful discussion for those with an academic interest in BIID but also those with the condition itself.
Thirdly, while the concepts of health, disability, and neuroprosthetics have a significant part to play in the discussion around healthy limb amputation as a therapeutic measure in cases of BIID, they are also important factors when considering similar requests as they originate from people without the condition. Anyone could request to have a healthy limb amputated.
It is just that it is currently most common in those with disorders, and out of these disorders, those with BIID present the most convincing argument that they should be allowed to have the procedure, given that they can give autonomous consent and have the most to gain.
However, as developments in prosthetic technologies continue to bring their level of functioning towards that of a biological limb, it would not be unrealistic to assume that those with the means to have their biological limbs replaced with advanced prosthetics may choose to do so.335 As such, this thesis, with its exploration of the relationship between neuroprosthetic technologies and the concepts of health and disability, rather than concerns of autonomy, can still play a significant role in the discussion regarding the ethical viability of allowing such amputations to take place, even in cases where questions of autonomy are not front-and-centre.
4.3 BACKGROUND ASSUMPTIONS AND GROUNDING PRINCIPLES
As mentioned, to answer the central questions of this thesis, as encapsulated in the four journal articles, several other questions which are pertinent to the discussion around healthy limb amputation will have to be addressed. What follows is a brief account of these questions and the stance this thesis will take regarding their answers, be they final or otherwise.
335 John Niman, (2013) 'Prosthetic Technology and Human Enhancement: Benefits, Concerns and Regulatory Schemes', Institute for Ethics and Emerging Technologies,
4.3.1 SELF-OWNERSHIP AND RESPECT FOR AUTONOMY
It would seem uncontroversial to start with the claim that individuals have a right to make and implement autonomous decisions regarding their bodies. If a free and autonomous individual is making a decision, which does not reasonably and foreseeably negatively impact the safety or well-being of others, then external stakeholders, including government forces and institutions, have no moral right to impose their will upon that individual. This position is perhaps summed-up no better than by John Stuart Mill, in the introductory chapter to his magnum opus, On Liberty, when he writes:
That the only purpose for which power can be rightfully exercised over any member of a civilized community, against his will, is to prevent harm to others. His own good, either physical or moral, is not a sufficient warrant. He cannot rightfully be compelled to do or forbear because it will be better for him to do so, because it will make him happier, because, in the opinions of others, to do so would be wise, or even right. These are good reasons for remonstrating with him, or reasoning with him, or persuading him, or entreating him, but not for compelling him, or visiting him with any evil in case he do otherwise. To justify that, the conduct from which it is desired to deter him, must be calculated to produce evil to some one else. The only part of the conduct of any one, for which he is amenable to society, is that which concerns others. In the part which merely concerns himself, his independence is, of right, absolute. Over himself, over his own body and mind, the individual is sovereign.336
This thesis will take, as a given, that an individual has the right to negative liberty from unjust external coercion and interference in their body. In conjunction with this negative liberty, one also has the positive liberty to alter their body in a manner that they see fit, as well as the right to determine what it is about their lives that they value, and how they will go about affirming and securing such valuable commodities or modes of living.337
To take the contrasting view that the power of the state, and other people, can be exercised over individuals to coerce their actions and frustrate their desires, even when such desires do not cause harm to others and are born from an autonomous decision, is a highly problematic one. In a historical context, it has proven to be the foundation for many of the
336 John Stuart Mill, (1859), On Liberty (Cambridge: Cambridge University Press). p. 22. 337 This conception of negative and positive liberties draws from Isaiah Berlin’s work on the subject of liberty and rights. See: Isaiah Berlin, (2002) 'Two Concepts of Liberty' in Henry Hardy (ed) Liberty: Incorporating Four Essays on Liberty, 1st edn, (Oxford: Oxford University Press). 93 most grotesque oppressions forced upon minority and marginalised groups. For example, the forced sterilisation and reproductive coercion movement of the so-called ‘feeble-minded’ in the United States of America as part of the late 19th/early 20th-century eugenics movement338 and the landmark case of Buck v. Bell.339 Both of which had at their core the unjustified infringement of basic human dignity and self-determination.
Concerning the practice of providing therapeutic, healthy limb amputations to those with
BIID, in this thesis, I hold that until it can be demonstrated beyond a reasonable doubt that an individual who expresses such a desire does unquestionably suffer from a condition that impedes their ability to exercise free and rational thinking, and as such, compromises their ability to provide autonomous consent for such a procedure, then respect for their motives must be exhibited and, wherever possible, honoured.340 This is regardless of how alien or unusual such a desire may seem to others.
4.3.2 THE RIGHTS AND MORAL STANDING OF THOSE WITH
IMPAIRMENTS
The second assumption which underlies the articles featured in this thesis, and one which I sincerely hope anyone reading this also shares, concerns the moral status of those individuals who have impairments, be they physical, cognitive, sensory, or otherwise; namely, that those individuals hold the same rights and moral worth as their classically identified ‘non-impaired’ counterparts.
In this thesis, I hold that each person possesses the same fundamental rights, and every individual’s interests should amount to the same value in calculations regarding political, social, and medical policy, regardless of disability or lack thereof. At no point should an
338 Allen, 'The Social and Economic Origins of Genetic Determinism: A Case History of the American Eugenics Movement, 1900–1940 and Its Lessons for Today'; Fernald, 'The Burden of the Feeble- Mindedness'. 339 Buck v. Bell [1927] 274 US 200; 47 S Ct 584; 71 L Ed 1000; 1927 US. 340 By honoured, I do not mean to say that surgeons must carry out an amputation, even if they do not believe such operations to be necessary, simply because a competent patient requires it. Rather, clinicians must not fall into a position of strong paternalism and assume that the desires of the patient may be utterly disregarded because the clinician ‘knows better’. 94 individual’s well-being or interests be suspended or viewed as lesser than that of a non- impaired person solely as a result of one being impaired and the other not.
While one would hope that this is uncontroversial, the COVID-19 outbreak has highlighted that such a claim is not universally accepted. In situations when discussions regarding the allocation of scarce healthcare resources have been had, ableist rhetoric regarding the assumed disvalue associated with being impaired has seeped its way into policy decisions and legislation, as well as being exposed in pre-existing, non-COVID specific guidance. This discrimination has been compounded further by how specific legislation, particularly the
Coronavirus Act 2020, has put at risk those with disabilities under the justification of serving the public good and protecting the population’s health at large.341
The most striking examples of this are included in the guidance provided in the USA,342 particularly in the states of Alabama,343 Kansas,344 Tennessee,345 and Washington.346 Guidance produced by each of these states contains some form of provision which recommends,
341 Human Rights Watch, (2020) 'UK: COVID-19 Law Puts Rights of People with Disabilities at Risk', Human Rights Watch,
Concerning the desire for healthy limb amputation as expressed by individuals with BIID, I hold that the moral standing of an individual is the same both before and after an elective amputation. Simply because that person now has an impairment does not equate to them having a lower moral value or their interests being of less societal concern.
4.4 THE EMPIRICAL, THE SOCIAL, THE NORMAL, AND THE
PATHOLOGICAL
Now that the contextual components of this thesis have been outlined and the relevant questions which relate to the topic at hand have been answered (at least as far as required here), it is time to introduce the theoretical structures which will be used to explore the practice and permissibility of therapeutic, healthy limb amputation in cases of BIID. In this section, I first outline and explore the biostatistical theory of health, as proposed by philosopher Christopher Boorse, which will act as an example of a naturalistic model of
347 Alabama Disabilities Advocacy Program, (2020) 'Complaint of Alabama Disabilities Advocacy Program and the Arc of the United States', Alabama Disabilities Advocacy Program,
4.4.1 BOORSE’S BIOSTATISTICAL THEORY
Boorse’s biostatistical theory (BST) is arguably the most influential naturalistic account of health and disease.350 It provides a foundation in the philosophy of medicine for many writers, academics, and practitioners in the field of healthcare ethics.351 Initially proposed in the mid-1970s,352 and later revised in 1987353 and 1997,354 the BST categorises pathological conditions, which includes impairments, according to an empirical, medical-science framework. The central claim of the BST is that through it, it is possible to obtain a value- free, objective concept of healthy and pathological conditions via the employment of empirical methods and observations. This is done through “a rational reconstruction of the notion of health implicit in physiology, considered as the basic medical science.”355 In other
349 Boorse goes so far as to describe himself as an ‘unrepentant naturalist.’ See: Boorse, 'A Rebuttal on Health'., p.5. 350 József Kovács, (1998) 'The Concept of Health and Disease', Medicine, Health Care and Philosophy, 1(1), pp.31-39.; Ron Amundson, (2000) 'Against Normal Function', Studies in History and Philosophy of Science, 31(1), pp.33-53.; Rachel Cooper, (2002) 'Disease', Studies in History and Philosophy of Science Part C: Studies in History and Philosophy of Biological and Biomedical Sciences, 33(2), pp.263-282.; Lennart Nordenfelt, (2004) 'The Logic of Health Concepts' in George Khushf (ed) Handbook of Bioethics, 1st edn, (Dordrecht: Springer).; Elselijn Kingma, (2010) 'Paracetamol, Poison, and Polio: Why Boorse's Account of Function Fails to Distinguish Health and Disease', The British Journal for the Philosophy of Science, 61(2), pp.241-264. 351 Amundson, 'Against Normal Function'. 352 Christopher Boorse, (1975) 'On the Distinction between Disease and Illness', Philosophy & Public Affairs, 5(1), pp.49-68.; Christopher Boorse, (1977) 'Health as a Theoretical Concept', Philosophy of Science, 44(4), pp.542-573.; Christopher Boorse, (1976) 'Wright on Functions', The Philosophical Review, 85(1), pp.70-86.; Christopher Boorse, (1976) 'What a Theory of Mental Health Should Be', Journal for the Theory of Social Behaviour, 6(1), pp.61-84. 353 Christopher Boorse, (1987) 'Concepts of Health' in Donald VanDeVeer and Tom Regan (eds), Health Care Ethics: An Introduction, 1st edn, (Philadelphia: Temple University Press). 354 Boorse, 'A Rebuttal on Health'. 355 Maël Lemoine and Élodie Giroux, (2016) 'Is Boorse's Biostatistical Theory of Health Naturalistic?' in Elodie Giroux (ed) Naturalism in the Philosophy of Health, vol 17, 1st edn, (Cham: Springer International Publishing)., pp.19-20. 97 words, according to the theory, what should be considered healthy, and conversely pathological, is derivable from empirical observation of the body.
As described by Norman Daniels, the mantra of the BST is that “health is the absence of disease, and disease (I include deformities and disabilities that result from trauma) are deviations from the functional organization of a typical member of a species.”356 Health, as understood according to this definition, is obtained through the observation of biological normality. According to this conceptual foundation, the condition that is statistically common throughout a species is what it is to be healthy, and this point of commonality of function is referred to as ‘normal species functioning’ (NSF). ‘Unacceptable’ deviation from this NSF, either as the result of an inherited or acquired factor, constitutes a pathological condition. Therefore, being statistically average equates to being normal in an evaluative sense; that which is common is that which should be.
However, such an unsophisticated account of health, one that measures everyone according to the same standard, is unable to accommodate ‘acceptable’ differences and deviations within species—for example, expected hormonal, genetic, and anatomical differences between males and females. If one were to base their NSF on an entire species, then the BST would never be able to account for group-specific variation regarding healthy functioning, and therefore the difference between normal and pathological variation.
Boorse tackles this through the inclusion of ‘reference classes’. These classes provide a framework against which normal variation within a species can be accounted for, and as such, provide a slightly more nuanced and tailored level on which NSF can be applied.
Reference classes are formalised in terms of age and sex.357 So, a 98-year-old female can be a formulation of a reference class. Therefore, when seeking the objective qualities that define an organism’s healthy state, such a task should be done with the appropriate reference class.
356 Ron Amundson, (1992) 'Disability, Handicap and the Environment', Journal of Social Philosophy, 23(1), pp.105-119., p.105. 357 Originally, race was also included as part of a reference class criteria. However, this inclusion of race as a reference class, as well as being a biological category in and of itself, has been criticised repeatedly over the past century. As put by Amundson in Against Normal Function, “we are not carving nature at its joints when we portioned human variability into races.” As such, the inclusion of race as a factor in the categorisation of reference classes is something which Boorse has moved away from in his revisions to the BST. 98
One would not define the health of a 6-year old female against the reference class of a typical
49-year-old male, as the two diverge in a considerable number of predictable and non- pathological ways. In Boorse’s own words:
A five-year-old child who cannot walk or talk is abnormal, but not a one- year-old – and it is hard to see how this judgement rests on any ideal. Likewise, a 25-year-old woman who fails to menstruate is abnormal, but not a man of the same age.358
In short, then, “[t]he fundamental idea is that a pathological condition is a state of statistically species-subnormal biological part-function.”359 Health is the inverse of this and the absence of such disconformity. In situations where NSF is so varied as not to be uniform at all, no singular version of that trait can be required for health. The examples Boorse gives are eye colour, blood type, height, metabolism, and body build.360 Boorse clarifies the key terms employed in the BST in his 2014 paper when he writes:
1. The reference class is a natural class of organisms of uniform functional design; specifically, an age group of a sex of a species.
2. A normal function of a part or process within members of the reference class is a statistically typical contribution by it to their individual survival [or] reproduction.
3. Health in a member of the reference class is normal functional ability: the readiness of each internal part to perform all its normal functions on typical occasions with at least typical efficiency.
4. A disease [later, pathological condition] is a type of internal state which impairs health, i.e., reduces one or more functional abilities below typical efficiency.361
358 Christopher Boorse, (2011) 'Concepts of Health and Disease' in Fred Gifford (ed) Philosophy of Medicine, 1st edn, (Amsterdam: Elsevier Science & Technology)., p.22. 359 Boorse, 'A Rebuttal on Health'., p.4. 360 Boorse, 'Health as a Theoretical Concept'., p.562. 361 Boorse, 'A Second Rebuttal on Health'., p.684, emphasis in original. 99
Thus, according to Boorse, “a disease is a type of internal state that reduces health, where health is normal function relative to one’s reference class.”362 As such, to aim for normality is to aim for health.
While the BST has been highly influential since its initial emergence, it has been consistently criticised and challenged. Despite this, the theory has remained a stalwart of naturalism v. normativism bioethical discourse. What follows is a brief account of the three main criticisms of the BST, each of which is levied against the theory’s central claim that it is a value-neutral account of health.
Firstly, as raised by H. Tristram Engelhardt Jr,363 and more recently by Marc Ereshefsky,364 to base the concept of ‘normal function’ in terms of a contribution to an individual’s ability to survive and reproduce is to invoke value into the theory explicitly. Such employment treats survival and reproduction as goals of an organism’s physiology, and thus they are value- laden concepts as they apply an aim to a biological entity where none exists. As stated by
Ereshefsky:
Biology describes various states organisms can be in, and one type of state happens to concern fitness. Biology does not tell us that surviving and reproducing, versus achieving other kinds of states, are the goals of organisms. That choice comes from outside of biology. By choosing fitness as the goal of organisms, Boorse violates a main tenet of naturalism—that biology and biology alone should tell us what is ‘health’.365
For example, homosexuality was considered a pathological condition until its removal in the
DSM-II in 1973.366 This removal came about not as the result of any change in medical knowledge but rather as a change of the societal value afforded to gay people and the concerted movement to correctly identify it as a regular expression of sexuality.
Nevertheless, according to the BST, homosexuality can be considered a pathological
362 Brent M. Kious, (2018) 'Boorse’s Theory of Disease: (Why) Do Values Matter?', The Journal of Medicine and Philosophy: A Forum for Bioethics and Philosophy of Medicine, 43(4), pp.421-438., p.424. 363 H. Tristram Engelhardt Jr, (1976) 'Ideology and Etiology', The Journal of Medicine and Philosophy, 1(3), pp.256-268. 364 Marc Ereshefsky, (2009) 'Defining ‘Health’ and ‘Disease’', Studies in History and Philosophy of Biological and Biomedical Sciences, 40(3), pp.221-227. 365 Ibid., p.223. 366 Jack Drescher, (2015) 'Out of DSM: Depathologizing Homosexuality', Behavioral Sciences, 5(4), pp.565-575. 100 condition as it inhibits one of the two main goals of an organism, that being reproduction.367
This point is something that Boorse himself has defended, albeit with the caveat that this does not then entail that homosexuality is a negative quality or something that ought to be remedied.368 However, this would seem a somewhat strange stance to take. Why is it that homosexuality can be considered a pathological condition and yet is not a negative quality?369 I would argue that pathological conditions, as envisioned by the BST, by their very nature, are unfavourable. To argue otherwise neuters the theory's central claim of understanding health without invoking evaluative judgements.
Additionally, why can’t homosexuality come under the group of traits that cannot be quantified in a manner to make such a pathological/health judgement, like blood type, eye colour, metabolism, etc.? Why are these traits so diverse as to be non-quantifiable, and yet sexual orientation is not? Boorse does not give an adequate answer to these questions. This lack of response is most likely because they do not exist; as the BST is conceived, a coherent answer cannot be provided. To say that reproduction is a fundamental goal of biology, and anything that frustrates that goal is a pathology, is to say that homosexuality is pathological, and therefore something to be rectified. A conclusion that is as repellent as it is untenable.
This observation leads us to the second, and somewhat complementary, criticism of the BST, as presented by Elselijn Kingma.370 This second criticism aims at the justification for why some forms of embodiment qualify for inclusion in a reference class, while others do not.
According to Boorse, a reference class is “a natural class of organisms of uniform functional design; specifically, an age group of a sex of a species.”371 As Kingma highlights, this would indicate that the justification for treating certain traits as appropriate for reference class
367 Indeed, being a single organism that requires another to reproduce inhibits reproduction, and yet it would seem bizarre to claim that the dependency on sexual reproduction, rather than asexual reproduction, is a signifier of pathology. 368 Boorse, 'On the Distinction between Disease and Illness'., p.63; Boorse, 'A Rebuttal on Health'., p.99. 369 In his 1997 paper, Boorse does add to his BST the mechanism of ‘disease-plus’ concepts. The purpose of this addition is to further qualify diseases with qualities such as harmful, harmless, treatable, asymptomatic, and so on. But all this mechanism does is camouflage normative judgements under the guise of an adjectival approach, thereby collapsing the purpose of the theory in the first place. 370 Elselijn Kingma, (2007) 'What Is It to Be Healthy?', Analysis, 67(294), pp.128-133. 371 Boorse, 'A Second Rebuttal on Health'., p.684. 101 status originates from three potential sources: (i) being natural; (ii) being uniform; and, (iii) being designed. However, what these terms mean is very open to interpretation.
For example, what does it mean for something to be natural? If this means occurring in nature, then all illnesses are natural as all illnesses occur in nature as our bodies, and everything else in existence, are natural and not supernatural entities.372 Natural might mean some form of normality derived from statistical commonality; that which is common is normal and therefore natural. However, this would mean that those people who have unusual traits, such as being a member of a minority race, are inherently unnatural and thus pathological. Additionally, those traits that are common and yet accepted to be pathological, such as asthma, diabetes, and obesity, would seem to qualify for reference class status.373
These are wholly untenable conclusions.
Because this interpretation is possible, a justification for why some traits and qualities are acceptable as reference classes, while others are not, is needed. A justification that will inherently be value-laden as it is not possible to derive one from empirical study, and even if it were, such study is not value-free in the first place.374 Kingma illustrates this brilliantly when she writes, “although facts determine both that I am a woman and that I am short- sighted, there are no empirical facts that determine that ‘women’ is an appropriate reference class, and ‘short-sighted people’ is not.”375 One could invert this example and argue that being short-sighted is an acceptable reference class while being a woman is not, without needing to provide any more-or-less justification than Boorse does. In short, there is no
372 Jennifer Worrall and John Worrall, (2001) 'Defining Disease: Much Ado About Nothing' in Anna- Teresa Tymieniecka and Evandro Agazzi (eds), Life Interpretation and the Sense of Illness within the Human Condition, (Dordrecht: Springer). 373 The estimated global prevalence’s of asthma, diabetes, and obesity are 4.4%, 5.4%, and 13.35% respectively. (World Health Organization, (2020) 'Asthma - Key Facts', World Health Organisation,
The final flaw concerning the BST’s appropriateness and effectiveness relates to the fallacy of appealing to nature for normative guidance as to how the body should or should not be constructed. This appeal relates closely to the ‘is-ought’ fallacy as envisioned by David
Hume in his Treatise on Human Nature, in which he writes:
In every system of morality, which I have hitherto met with, I have always remark'd, that the author proceeds for some time in the ordinary way of reasoning, and establishes the being of a God, or makes observations concerning human affairs; when of a sudden I am surpriz'd to find, that instead of the usual copulations of propositions, is, and is not, I meet with no proposition that is not connected with an ought, or an ought not. This change is imperceptible; but is, however, of the last consequence. For as this ought, or ought not, expresses some new relation or affirmation, 'tis necessary that it shou'd be observ'd and explain'd; and at the same time that a reason should be given, for what seems altogether inconceivable, how this new relation can be a deduction from others, which are entirely different from it.377
For Hume, knowledge of the world’s present and past forms does not inherently lead to an evaluative judgement about how the world should be in the future. There is a gap between how the world currently exists and a judgement about what form the world should be. In short, Hume highlights the logical gap between statements about how the world ought to be, which often follow statements about how the world is.
This relates to the BST as the foundational concept upon which Boorse bases his idea is in the ability to determine what a healthy and pathological form present themselves as based upon what is typical for their reference class. It is from this commonality, which is solidified in his concept of NSF, which the BST draws its apparent value-free evaluative power.
376 David B. Hershenov presents an interesting, albeit flawed, response to this criticism by appealing to the idea of biological entities as inherently ‘entropy resistors,’ and thus survival is not a normative goal but a necessary fact of existence. See: David B. Hershenov, (2020) 'A Naturalist Response to Kingma’s Critique of Naturalist Accounts of Disease', Theoretical Medicine and Bioethics, 41(2), pp.83- 97. 377 David Hume, (2014), A Treatise of Human Nature, 2nd edn. (Oxford: Oxford University Press)., p.469. 103
However, what the BST is unable to provide is a sufficient argument supporting the claim that the statistically common form is one that is desirable and healthy.378
Put simply, Boorse fails to bridge the gap between the empirical observation that bodily forms have a point of NSF and the normative value-laden claim that this point of NSF is the point in which bodily forms ought to reside. Because of this failure, the BST cannot provide an adequate account as to what health and pathology are, only what is typical for a body to look like. This falls far short of the theory’s lofty ambitions.379
With that being said, as mentioned, the BST has been highly influential in bioethical discourse and the philosophy of medicine. It is because of this legacy that the theory has been employed in this thesis as the representative for biomedical, empirical theories of health, pathology, and notably, disability. The BST represents only one side of the naturalism v. normativism debate, and it is to the latter that this thesis now turns.
4.4.2 THE SOCIAL MODEL OF DISABILITY
In response to concerns regarding naturalistic accounts of health, illness, and disability, embodied by Boorse’s BST, an alternative family of models emerged which, influenced by the 1960s and 1970s minority groups and civil rights movements, focused on the socio- political factors inherent in disability. This family of models, which includes the social
378 For more on the interaction between the is-ought fallacy and health states, see: Rob De Vries and Bert Gordijn, (2009) 'Empirical Ethics and Its Alleged Meta-Ethical Fallacies', Bioethics, 23(4), pp.193- 201. 379 One final criticism, which I have not been able to delve into here, is the BST’s reliance on the concept of a species. While the idea of separate species was once immutable, there has been a growing recognition that the division between species is of a qualitative rather than quantitative nature. See: Marc Ereshefsky, (2010) 'Darwin's Solution to the Species Problem', Synthese, 175(3), pp.405-425. 104 model,380 the relational model,381 the diversity model,382 and the human rights model,383 repositioned the source of disability away from the impaired individual, as was the case in naturalistic, bio-medical accounts, and towards the way society was designed and equipped to handle their atypical needs. Some have heralded the model as the “first big idea of the
Disability Movement.”384 In Britain, it has been the social model of disability (SMD) that has been most influential as a means of both analysing the varying forms of exclusion that impact disabled people, as well as being a political and sociological tool for enacting positive change.385
The SMD emerged from the discussions of the Union of Physically Impaired Against
Segregation, first in their 1974 policy statement,386 which was then elaborated on in their
Fundamental Principles of Disability discussion with the reformist Disability Alliance,387 as
380 This model is otherwise known as the social interpretation of disability. 381 Also known as the Nordic Relational Model of Disability because of its origins and popularity in the Nordic countries, according to this model disability exists on a spectrum which shifts from the individual and their environment. It focuses on their capacities and abilities, rather than being the single defining feature of that individual. Thus, disability is a mismatch between the person’s capabilities and the functional demands of their surroundings. What separates this model from the British Social Model of Disability is that it sees impairment and disability as interacting with one another on a continuum, but simultaneously views disabled people as flawed and unable to perform in social roles in the same way as non-disabled people. See, Dan Goodley, (2011), Disability Studies: An Inter-Disciplinary Introduction, 1st edn. (London: Sage). 382 This model of disability, which arose from the minority group model in the USA, focused attention on how social structures responded to variations in the human form and identity brought about by disability. Accordingly, it questioned the (dis)ability dichotomy and sought to argue that disability is a universal experience, not a minority one. See, Jerome E. Bickenbach et al., (1999) 'Models of Disablement, Universalism and the International Classification of Impairments, Disabilities and Handicaps', Social Science & Medicine, 48(9), pp.1173-1187. 383 Commonly attributed to the work of Gerald Quinn and Theresia Degener, the human rights model of disability focuses on the dignity inherent in the human condition, and subsequently, when necessary, on that person’s medical characteristics. It takes the mantra and ideals of the Social Model of Disability further and examines the inherently political nature of disability concerning legal and political structures, such as the Convention on the Rights of Persons with Disabilities. See: Theresia Degener, (2016) 'Disability in a Human Rights Context', Laws, 5(3), pp.35. 384 Mike Oliver, (2004) 'If I Had a Hammer: The Social Model in Action' in John Swaine and others (eds), Disabling Barriers, Enabling Environments, 2nd edn, (London: Sage Publications)., p.10. 385 Shakespeare, 'The Social Model of Disability'. 386 Union of Physically Impaired Against Segregation, (1974) 'Policy Statement', Union of Physically Impaired Against Segregation,
1983.388 The critical element of the SMD was its distinction between disability and impairment. The SMD postulated that instead of disabilities resulting exclusively from the cognitive, physical, or sensory deficits of individuals, its true origin lies within the inabilities and deficiencies of that individual’s socio-political and physical environment to cater for their atypical needs. Disability was not defined concerning a lack of functionality, as it had been by biomedical models, but rather as:
The disadvantage or restriction of activity caused by a contemporary social organisation which takes little or no account of people who have physical impairments and thus excludes them from participation in the mainstream of social activities. Physical disability is therefore a particular form of social oppression.389
That is to say, “it is society which disables physically impaired people. Disability is something imposed on top of our impairments by the way we are unnecessarily isolated and excluded from full participation in society.”390 This model places pressure on society as a whole to adjust the built and social structures to be more accommodating of the needs of those individuals with impairments, as the presence or absence of such measures and appropriate resources are critical in the production and reduction of disabilities.
This approach is at odds with naturalistic accounts, such as the BST, which conflates disability and impairment with an intrinsic deficit.391 Naturalistic accounts argue that a person’s disability can be identified, eliminated, or at least compensated for, by the restoration of NSF through the use of medicine and the efforts of clinicians and similar healthcare professionals. It is this difference between the conceptualisation of people with disabilities (BST) and disabled people (SMD), along with an oppositional stance to naturalistic
388 Mike Oliver, (1983), Social Work with Disabled People, 1st edn. (London: Macmillan); Michael Oliver, (1998) 'Theories in Health Care and Research: Theories of Disability in Health Practice and Research', British Medical Journal, 317(7170), pp.1446-1449; Mike Oliver, (2013) 'The Social Model of Disability: Thirty Years On', Disability & Society, 28(7), pp.1024-1026. 389 Union of Physically Impaired Against Segregation, 'Fundamental Principles of Disability'. 390 Mike Oliver, (2004) 'The Social Model in Action: If I Had a Hammer' in Colin Barnes and Geof Mercer (eds), Implementing the Social Model of Disability: Theory and Research, 1st edn, (Leeds: The Disability Press)., p.22. 391 Reynolds, '“I’d Rather Be Dead Than Disabled”—the Ableist Conflation and the Meanings of Disability'. 106 accounts, which is a leading factor in why medical models have lost influential territory, and socio-political models, such as the SMD, have gained it.392
With this gain came a specific form of politicisation of disability. Rather than disabled people being a burden upon society who needed to either be remedied or contained,393 they now had a political strategy that they could enact to challenge this segregation as well as their broader societal devaluation; barrier removal. Through the identification of this target, the shift of moral responsibility for disability moved from the individual to society, and thus, to those with responsibility for societal functions. The model was a considerable driving force, because of the way it identified forms of discrimination that disabled people,394 behind the formation of the Disability Discrimination Act 1995.
However, the model is far from universally accepted. Prominent disability studies scholar and activist Tom Shakespeare has criticised it over its “neglect of impairment, the dichotomy between impairment and disability, and the faith placed in barrier removal.”395 These criticisms, which target the model’s theoretical and conceptual foundations, are valid. The model is not a perfect method for understanding the cornucopia of forms and experiences that comprises the disabled and impaired lived experience. Defending the model from such criticisms would be a considerable, and potentially futile, task; one which falls well beyond the scope of this thesis.396 Despite this, however, the model still has considerable value as a blunt political tool for shifting perceptions of disability and catalysing discourse regarding
392 Janine Owens, (2015) 'Exploring the Critiques of the Social Model of Disability: The Transformative Possibility of Arendt's Notion of Power', Sociology of Health & Illness, 37(3), pp.385-403. 393 The relationship between disability and institutionalisation is complex, and unfortunately, a long one. What makes it more harrowing then it already is, is that this relationship also closely intersects with that of incarceration and criminality. All of which form a complex through which the ‘abnormal’ or ‘feebleminded’ can be removed from mainstream society. See: Liat Ben-Moshe, (2013) '"The Institution yet to Come": Analyzing Incarceration through a Disability Lens' in Lennard J. Davis (ed) The Disability Studies Reader, 5th edn, (London: Taylor and Francis). 394 Colin Barnes, (1991), Disabled People in Britain and Discrimination: A Case for Anti-Discrimination Legislation (London: Hurst in association with the British Council of Organisations of Disabled People). 395 Tom Shakespeare, (2006), Disability Rights and Wrongs (London: Routledge)., p.2. 396 For such a defence, see: James Furner, (2019) 'Recovering the Social Interpretation of Disability', Disability & Society, 35(10), pp.1535-1555. 107 how non-typical forms and neurodivergent people should be accommodated for, and crucially, why.
Linked to this conversation-starting capacity comes the model’s utility in tackling the medicalisation and pathologisation of impairment and disability.397 It is the model’s function and basis as a counterpoint to the naturalistic accounts of health, illness, and disability, along with the reconceptualisation of disability’s origin, which makes the SMD the ideal tool for interrogating the idea that elective amputation in cases of BIID causes significant levels of harm, and as such, breach the principle of nonmaleficence.
If having an impairment itself is not intrinsically harmful but merely another form of bodily construction, then when giving an individual an impairment, it can be argued that no harm is necessarily caused. An amputation results in harm when that person goes on to experience disability, such as prejudice or inadequate environmental adjustments, which, while undoubtedly common, are not inevitable. In other words, in this thesis, I will use the
SMD as a means of arguing that while causing disability is wrong, this does not equate to saying that causing an impairment is also wrong; whether it is right to cause someone an impairment and cause someone a disability are two separate questions, and so require two separate explorations and answers.398
4.4.3 CANGUILHEM’S THE NORMAL AND THE PATHOLOGICAL
Written during World War II, first published in 1943, 399 reprinted in 1950, and then expanded upon in the 1966 revised edition,400 Canguilhem’s The Normal and the Pathological is considered by some to be a key text in the field of the philosophy of science, biology, and
397 Shakespeare, 'The Social Model of Disability'. 398 See: Chapter Six. 399 The 1943 edition was itself a print of Canguilhem’s doctoral thesis in medicine, titled Essai sur quelques problèmes concernant le normal et le pathologique (Essay on Some Problems Concerning the Normal and the Pathological), which he defended before the Strasbourg Faculty of Medicine. This is not to be confused with his doctoral thesis in philosophy, directed by Gaston Bachelard, which he defended in 1955, titled La formation du concept de réflexe (which roughly translates to The Formation of the Relfex Concept). 400 It is this 1966 edition which has been used here. 108 medicine.401 This book, alongside his broader works, has left a lasting legacy in both continental philosophy and the philosophy of biology, directly influencing the careers of notable philosophers, including François Delaporte and Michael Foucault,402 both of whom were his protégés.403
The Normal and the Pathological fuses philosophy with history to evaluate the progress of concepts in medicine and science, chiefly amongst them being the idea of the ordinary and its influence within the history of medicine. Canguilhem saw this history as a constant conflict between the descriptive (the act of producing evidence free of judgement and value) and the normative (the interpretation of that evidence according to a pre-existing set of values). Throughout his work, Canguilhem emphasised the priority of concepts over facts because of their explanatory power and practical value.404
The aim of the book, which consists of three main parts,405 is to interrogate and refute the commonly adopted 19th-century thesis according to which “pathological phenomena are identical to corresponding normal phenomena save for quantitative variations.”406 Such a thesis is still embodied today in medical models of health, such as the BST, which, as just discussed, perceive the pathological body as being quantitatively different from the normal/healthy body; a difference which can be resolved by addressing such deviancy, thereby restoring the body to statistical normality, and as such, to health.407
401 Jean Gayon, (1998) 'The Concept of Individuality in Canguilhem's Philosophy of Biology', Journal of the History of Biology, 31(3), pp.305-325; Jonathan Hodge, (2000) 'Canguilhem and the History of Biology', Revue D'histoire des Sciences, 53(1), pp.65-81. 402 Francoiş Delaporte, (1991), The History of Yellow Fever: An Essay on the Birth of Tropical Medicine, trans. Arthur Goldhammer, 1st edn. (Cambridge: MIT Press)., p.xiii; Michel Foucault, (1985) 'La Vie: L'expérience Et La Science', Revue de Métaphysique et de Morale, 90(1), pp.3-14. 403 The 19991 English print version of The Normal and the Pathological contains an introduction by Foucault himself, while Delaporte edited a book on the selected writings of Canguilhem, titled A Vital Rationalist. 404 Richard Horton, (1995) 'Georges Canguilhem: Philosopher of Disease', Journal of the Royal Society of Medicine, 88(6), pp.316-319., p.317. 405 The first two of these parts are contained within the first section, written in 1943, and the third part comprises of the 1966 additions. 406 Georges Canguilhem, (1991), The Normal and the Pathological, trans. Carolyn R. Fawcett, 1st edn. (New York: Zone Books)., p.35. 407 See: §.4.4.1. 109
The purpose of his work, which is encapsulated in this book and which echoes the view of philosopher Léon Brunschvicg, is not strictly to answer questions but rather to reopen solved problems.408 Canguilhem seeks to challenge the way that physiologists employ an unexamined and unquestioned concept of the normal and the pathological. This assumption is something that Canguilhem points out is not granted in other branches of medicine, such as psychiatry,409 and has a detrimental impact on medical practice as a whole.
Intending to examine the history of notions such as health and disease, not unlike the way
Nietzsche investigated the historical construction of truth and lies,410 Canguilhem illuminates the shifting and fluid nature of these terms and their intimate relationship to one another. Through doing so, he argues that the concepts of health and pathology, far from being fixed biological facts understandable only through the lens of medical or scientific concepts, are, in fact, phenomena determined and labelled by political, economic, and technological influences. To achieve his goal of launching this attack on the edifice of normalisation so essential to the procedures of positivist science and medicine, as Françios
Dagognet puts it,411 Canguilhem employs several different, yet interlocking, arguments.
Part One of The Normal and the Pathological questions the idea of the pathological state as being merely quantitatively different from the healthy state and gives a brief history of such thinking. The works of Auguste Comte and Claude Bernard, whom Canguilhem believes had a profound influence on the solidification of the dogma of normality and pathology in the medical sciences,412 are critically examined. These are contrasted with the work of René
Leriche, with whom Canguilhem’s ideas resonate, and who argues against the doctrine of a wholly statistically informed concept of health and pathology, concluding that “[b]etween
408 This link between his work and that of Brunschvicg is something which Canguilhem himself notes in The Normal and the Pathological, writing that, “Léon Brunschvicg said of philosophy that it is the science of solved problems. We are making this simple and profound definition our own.” Canguilhem, The Normal and the Pathological., p.35. 409 Ibid., p.115. 410 See: Friedrich Wilhelm Nietzsche, (2009) 'On Truth and Lies in an Extra-Moral Sense (1873)' in Raymond Geuss and Alexander Nehamas (eds), Nietzsche: Writings from the Early Notebooks, 1st edn, (Cambridge: Cambridge University Press)., pp.253-264, and, Friedrich Wilhelm Nietzsche, (2017), On Truth and Lies in a Nonmoral Sense, Parts edn. (Hastings: Delphi Classics). 411 François Dagognet, (1985) 'Une Œuvre En Trois Temps', Revue de Métaphysique et de Morale, 90(1), pp.29-38., p.30. 412 Canguilhem, The Normal and the Pathological., p.46. 110 physiology and pathology there is no threshold.”413 Canguilhem summarises Part One by saying that it examined:
…the historical origins and analyzed the logical implications of the principle of pathology, so often still invoked, according to which the morbid state in the living being is only a simple quantitative variation of the physiological phenomena which define the normal state of the corresponding function. We think we have established the narrowness and inadequacy of such a principle.414
Part Two explores the titular subject of The Normal and the Pathological. This account goes through several phases to support Canguilhem’s exploration. The most important of which, for the interests of this thesis, will be very briefly outlined now.415
In Part Two’s first chapter, ‘Introduction to the Problem’, Canguilhem opens up the question of the lived experience of the sick, suggesting that a clinician cannot know what this experience is like through discussion alone, as “what the sick express in ordinary concepts is not directly their experience but their interpretation of an experience for which they have been deprived of adequate concepts.”416 One such concept is that of normality, and as such,
“biological normality,… is revealed only through infractions of the norm and that concrete or scientific awareness of life exists only through disease.”417 Canguilhem argues that this obfuscates what it truly means to be healthy as one is only aware of the state of health through its absence. When we come to communicate this experience, we are not describing how we feel but rather conveying what it is that we no longer feel.
The question of the nature of the normal regarding health is contextual because it is observable only in retrospect. This inherent aspect of its nature is something that clinicians have avoided acknowledging. He concludes his introduction to the problem by asking:
413 René Leriche, (1939), The Surgery of Pain, trans. Archibald Young, 1st edn. (Baltimore: Williams & Wilkins)., p.234, emphasis in original. 414 Canguilhem, The Normal and the Pathological., p.227. 415 This analysis covers 112 pages and so cannot be fully explored here. However, key themes and points will be touched upon in this section. For a more in-depth assessment of The Normal and the Pathological, as well as other aspects of Canguilhem’s work, see: Stuart Elden, (2019), Canguilhem, 1st edn. (Cambridge: Polity Press). 416 Canguilhem, The Normal and the Pathological., p.118. 417 Ibid., p.118. 111
Whether it is medicine which converts – and how? – descriptive and purely theoretical concepts into biological ideals or whether medicine, in admitting the notion of facts and constant functional coefficients from physiology would not also admit – probably unbeknownst to the physiologists – the notion of norm in the normative sense of the word.418
From this point, Canguilhem moves into Chapter Two of Part Two, ‘A Critical Examination of Certain Concepts’, where begins a critical examination of the terms which are crucial in answering the question at hand, and as such, he sets out to come to a better understanding of the normal. Canguilhem employs medical and philosophical dictionary definitions, concluding that normal has two meanings.
Firstly, it can denote that which ought to be, and second, that which is most often the case.419
This ambiguity in the way the terms are employed, Canguilhem believes, originates from the way that ‘normal’ both denote a statistical fact and a value judgement attributed to that same fact; that which is common is often confused with that which desirable. Canguilhem, however, stresses that an anomaly is not inherently an abnormality, or in other words, that which is different is not necessarily monstrous. This idea that variation does not inherently denote pathology or undesirability is something that has, and will continue to, reappear through this thesis.
Canguilhem also begins to question the nature of pathology, noting that pathology is a much more restrained concept than the normal, observing that “biological pathology exists but there is no physical or chemical or mechanical pathology.”420 He goes onto argue that the pathological is not merely the opposite of the normal, eventually coming to propose that “it is life itself and not medical judgment which makes the biological normal a concept of value and not a concept of statistical reality.”421 This line of thinking eventually leads him to one of the most symbolic claims in the entire book; “diversity is not disease; the anomalous is not the pathological. Pathology implies pathos, the direct and concrete feeling of suffering and impotence, the feeling of life gone wrong.”422 It is here where Canguilhem’s philosophy is at
418 Ibid., p.123. 419 Ibid., p.125. 420 Ibid., p.127. 421 Ibid., p.131. 422 Ibid., p.137. 112 its closest to that of Leriche, according to whom health was to be understood as “the silence of the organs”,423 and, “disease is what irritates men in the normal course of their daily lives and work, and above all, what makes them suffer.”424 For both, experience is an inextricable part of pathology and health. This is an idea that underpins much of my work here.
From here, Canguilhem then examines the relationship between the individual and their milieu, and in particular, how normality cannot be derived from a separation of the two but only when they are taken together. He uses the example of colour variation and rates of survival in butterflies between pre-industrial, industrial, and post-industrial environments to illustrate his argument. As Canguilhem concludes, “[t]aken separately, the living being and his environment are not normal: it is their relationship that makes them such.”425 He goes on to write:
A living being is normal in any given environment insofar as it is the morphological and functional solution found by life as a response to the demands of the environment. Even if it is relatively rare, this living being is normal in terms of every other form from which it diverges, because in terms of those other forms it is normative, that is, it devalues them before eliminating them.426
Canguilhem repeats this point multiple times, and it is something which this thesis has a significant foundation upon; the idea that there is no fact or state which is independently normal or pathological. Conditions or ways of life that have been given the label of pathological can only meaningfully be so if these same states result in the form of limitation; that is in terms of inhibition of survival, life, breeding, happiness, fulfilment, eudaimonia, or whichever criteria one uses. One state that appears to be inferior to another in one milieu may, in another milieu, be superior. As such, in this different setting, this alternative would be that which is normal for that individual.
Having already discussed the nature of statistics briefly, Chapter Three of Part Two, titled
‘Norms and Averages’, scrutinizes the statistical aspect of the concept of the normal. It
423 René Leriche, (1936) 'Introduction Générale; De La Santé À La Maladie; La Douleur Dans Les Maladies; Où Va La Médecine' Encyclopédie Française 6., 6.16-7. 424 Ibid., 6.22-3. 425 Canguilhem, The Normal and the Pathological., p.143. 426 Ibid., p.144, emphasis in original. 113 examines how the statistically normal is taken as the physiological norm and critiques such a view for smuggling ontological regularity as an empirical foundation.
Here, Canguilhem interrogates the idea that the statistically common is the ideal, and deviations from that ideal are symptomatic of pathology. He draws into contention the idea that physiological commonality is an expression of a deeper understanding of health, writing, “[i]n order to represent a species we have chosen norms which are in fact constants determined by averages. The normal living being is the one who conforms to these norms.
Nevertheless, must we consider every divergence abnormal?”427
Canguilhem explores this question through the chapter, drawing on Pierre Vendryès’ generation of individual averages,428 Adolphe Quetelet’s work on anthropometric procedures,429 and Maximilien Sorre’s research into the impact of geography on comparative human physiology.430 Canguilhem summarises that:
If it is true that the human body is in one sense a product of social activity, it is not absurd to assume that the constancy of certain traits, revealed by an average, depends on the conscious or unconscious fidelity to certain norms of life. Consequentially, in the human species, statistical frequency expresses not only vital but also social normativity.431
Canguilhem concludes this chapter by writing, “we think that the concepts of norm and average must be considered as two different concepts: it seems vain to try and reduce them to one by wiping out the originality of the first.”432 A point that he explores through the rest of the book.
‘Disease, Cure, Health,’ Chapter Four of Part Two, presents Canguilhem’s claims regarding how the preceding chapters should be interpreted when it comes to the nature of medicine and biology. He opens the chapter by stating that “[i]n distinguishing anomaly from the pathological state, biological variety from negative vital value, we have, on the whole, delegated the responsibility for perceiving the onset of disease to the living being himself,
427 Ibid., p.154. 428 Ibid., p.154. 429 Ibid., p.157. 430 Ibid., p.163. 431 Ibid., p.160. 432 Ibid., pp. 177-178. 114 considered in dynamic polarity.”433 Here, Canguilhem begins to outline his thesis that reference must always be made, not between an individual and the statistically common state for their species, but rather, between that individual and their milieu. He takes this point even further and argues that it is more than merely a point of understanding health.
He maintains that the statistical average is not a point from which we can, in any meaningful way, draw upon to discharge a medical duty to an individual.
This is an essential point within Canguilhem’s thesis as it is where he notes that health is not a collective phenomenon but is, in fact, an individual experience, and it is from this experience that we can justify medical interventions. The healthy and pathological are understood concerning that same individual at different points in their life. Consequentially, the normal and the pathological are not opposites in an absolute sense, or, as he writes,
“[t]he content of the pathological state cannot be deduced, save for a difference in format, from the content of health; disease is not a variation on the dimension of health; it is a new dimension of life.”434 This point is then linked back to the importance that the milieu plays in
Canguilhem’s theory. The normal is not something that exists independent of an environment, but concerning it, and it is from the relationship between the two that health is understood. He expresses this in succinct terms when he writes:
Being healthy means being not only normal in a given situation but also normative in this and other eventual situations. What characterizes health is the possibility of transcending the norm, which defines the momentary normal, the possibility of tolerating infractions of the habitual norm and instituting new norms in new situations.435
Health, according to Canguilhem, is an ability to adapt to one’s milieu; it is an ability to tolerate the inconsistencies in one’s environment. Biological beings do not have a static existence, be that within the oscillations of their bodies or the fluctuations in the world around them. Being able to adapt and alter one’s capacities and functions to tackle such challenges is, according to Canguilhem, what it is to be healthy. In other words, “[t]o be in good health means being able to fall sick and recover, it is a biological luxury” and “disease
433 Ibid., p.181. 434 Ibid., p.186. 435 Ibid., pp.196-197. 115 is characterized by the fact that it is a reduction in the margin of tolerance for the environment’s inconsistencies.436
Chapter Five, titled ‘Physiology and Pathology’, examines the relationship between the science of the former and its influence on the understanding and labelling of the latter, and importantly vice versa. Here, Canguilhem seeks to illustrate that “in order to define physiology, everything depends on one’s concept of health.”437 This stands in contrast to naturalistic accounts of health, such as the BST, which see the definition of health as being derivable from statistically common physiology.
He goes on to argue that, at the empirical level, there is no difference between the physiological (as concerns the healthy body) and pathological (as concerns the diseased body). These two are, from an objective point of view, the same. To look for a difference between them, to try and draw a line in the sand where one can say the former ends, and the latter begins, is to leave the realm of empirical science and to venture into philosophical inquiry.
Canguilhem then continues to question the conceptual location and quality of disease. He argues that disease cannot be found at the level of the cell, tissue, or organ. Instead, disease is, and can only be, understood in terms of the functioning of the whole organism. He writes:
To look for disease at the level of cells is to confuse the plane of concrete life, where biological polarity distinguishes between health and disease, with the plane of abstract science, where the problem gets a solution. We do not mean that a cell cannot be sick if by cell we mean an entire living thing, as for example a protist, but we do mean that the living being’s disease does not lodge in parts of the organism.438
The consequence of this macro-focus is that the labelling of disease requires a more holistic approach than an empirically constraint physiological approach can provide.
This comprehensive approach links back to Canguilhem’s arguments which
436 Ibid., pp.198-199. 437 Ibid., p.204. 438 Ibid., p.223-224. 116 understand health not as statistical deviation but instead as a relationship between an organism and its milieu.
Section Two then finishes with Canguilhem’s original conclusion to his doctoral thesis, as was. He summarises what has come before into a brief three-page précis of his arguments. The central excerpts from this conclusion, at least those of significant value for this thesis, are as follows:
If biological norms exist it is because life, as not only subject to the environment but also as an institution of its own environment, thereby posits values not only in the environment but also in the organism itself. This is what we call biological normativity.439
Man is healthy insofar as he is normative relative to the fluctuations of his environment.440
In any case no cure is a return to biological innocence. To be cured is to be given new norms of life, sometimes superior to the old ones. There is an irreversibility of biological normativity.441
The concept of the norm is an original concept which, in physiology more than elsewhere, cannot be reduced to an objective concept determinable by scientific methods. Strictly speaking then, there is no biological science of the normal. There is a science of biological situations and conditions called normal. That science is physiology.442
Thus it is first and foremost because men feel sick that a medicine exists. It is only secondarily that men know, because medicine exists, in what way they are sick.443
It is always the relation to the individual patient through the intermediary of clinical practice, which justifies the qualification of pathological.444
Section Two of The Normal and the Pathological, which comprises of three essays written during the twenty years after his first doctoral thesis and builds upon the
439 Ibid., p.227. 440 Ibid., p.228. 441 Ibid., p.228. 442 Ibid., p.228, emphasis in original. 443 Ibid., p.229. 444 Ibid., p.229. 117
1966 edition, sought to further explore, clarify, and contextualise the claims
Canguilhem makes in Section One. For this thesis, a substantive recap of where he takes his work in this second section is not necessary. However, there is one aspect of this additional work that would be useful to acknowledge.
In the first of these three additional chapters, titled ‘From the Social to the Vital’,
Canguilhem acknowledges, while not believing his original approach in Section One was poorly performed, the need to take account of the meanings of norm and normal in a more comprehensive sense then he did initially. To do this, he examines them in a broader societal, economic, political and ethnological manner, summarising this recontextualisation by quipping that “[i]t is with the organism in view that I am allowing myself some forays into society.”445 By doing this, Canguilhem incorporates a political element into his original thesis’ reflections, something which others, such as Foucault, would go onto develop.446
This societal angle to his work leads Canguilhem to argue that “[t]he normal is not a static or peaceful, but a dynamic and polemical concept.”447 According to
Canguilhem, norms are not just derived from statistical and empirical observations of the external world, as naturalistic accounts of health would have you believe, but rather, the norm also shapes such observations.
He makes this explicit when he writes, “[t]o set a norm (normer), to normalize, is to impose a requirement on an existence, a given whose variety, disparity, with regards to the requirement, present themselves as a hostile, even more than unknown, indeterminant.”448 The relationship between the organism and its milieu, which was so crucial for Canguilhem’s conceptualisation of health in Section One of The Normal and the Pathological, is enriched by this acknowledgement that for humans, being the political animals we are, our social environment affects our concepts of the norm and
445 Ibid., p.235. 446 See: Michel Foucault, (1989), The Birth of the Clinic: An Archaeology of Medical Perception, trans. Alan M. Sheridan, 1st edn. (London: Routledge). 447 Canguilhem, The Normal and the Pathological., p.239. 448 Ibid., p.239, emphasis in original. 118 the normal. This relationship between the body and society is a two-way avenue; the requirements of society dictate what can be considered normal and pathological.
The Normal and the Pathological is a critical foundational text for this thesis because of the challenges it presents to the idea that the biologically unusual is quintessentially pathological. Within the work, Canguilhem sought to fight against the concept of normality as a value-neutral descriptive notion and urged the reader to see it for its prescriptive nature, one loaded with presumptions and a dubious epistemological ancestry. What he wanted was a better understanding of the conceptual influences and distinctions between the healthy and pathological body, the latter of which was not necessarily a physiological or anatomical aberration but a limiting and oppressive presence. This is a concept of pathology which strongly resonates with the accounts of those individuals with BIID.
Now that an account of the bioethical background and foundations upon which this thesis is built has been given, I turn presently to its legal underpinnings as, while the PhD concerns itself with bioethics, it also has relevance to medical jurisprudence and legal theory.
4.5 ETHICS, LAW, AND THE LIMITATIONS OF LEGISLATION
In the fourth of my thesis articles, I challenge the lack of metaphysical foundation upon which the concept of GBH in English and Welsh law is built. I argue that a more considered account is required, using therapeutic, healthy limb amputation in cases of BIID as an example. This article’s conclusion rests, to a degree, on Article One and Two’s discussions, as well as the philosophical assumptions which have been outlined so far. However, while this is the case, Article Four and the entire thesis itself has a broader jurisprudential foundation.
The following section provides an account of the relationship, as seen in this thesis, between morality and law, as well as the latter's analytical nature. First, I provide an account of how law and morality are distinct yet closely related entities. I then move on to outline what I consider to be the proper limits of the law within a liberal society as we have in England and
Wales. These two points together serve as a grounding for the discussion, which takes place in Article Four.
119
4.5.1 THE DIVISION BETWEEN LAW AND ETHICS
One will likely notice when reading Chapters Three and Four, much of this thesis concerns itself with the ethics of permitting therapeutic, healthy limb amputation in cases of BIID.
These chapters relate chiefly to questions concerning the purpose of medical practice, the conceptualisation of pathology, the nature and source of disability, and the relationship between technology and the body. Little attention is paid to questions of legality and policy within the first three articles. This omission is because this thesis generally holds that one can learn little to nothing regarding the ethicality of an action by looking at its legal standing. Doing so only informs you as to whether something is legal, not whether it is right. Instead, such ethical evaluations are best executed through the considered application of philosophical tools and methods.
Consequentially, there is no necessary connection between the validity of legal propositions and moral truths. The law is that which exists not as an ideal object or system but rather as an imperfect artefact whose purpose is to facilitate the daily comings-and-goings of human existence. It is not a moral paragon whose decisions and decrees uniquely embody moral truth. The law should not be viewed as having any unique moral quality, nor conferring any more moral legitimacy to actions or practices than any other non-legal document.
However, this is not to say that morality and legality do not converge. As noted by H.L.A.
Hart, “it is in no sense a necessary truth that laws reproduce or satisfy certain demands of morality, though they have often done so.”449 While this thesis holds that the questions of ‘is x ethical?’ and ‘is x legal?’ are separate, and as such require separate investigation, the former can, and in many cases should, be used as a means of informing and possibly even conferring legitimacy to the latter. This does not mean that in all cases, morality can be grafted onto the legal systems of a liberal society, nor used as a foundation upon which the laws of that state can be based. This is because the scope of law and morality are not identical. Law must concern itself with incidents and cases which arguably contain little-to- no moral fibre, while conversely, ethics has interests that would typically be seen as falling
449 Herbert Lionel Adolphus Hart, (2015), The Concept of Law, 3rd edn. (Oxford: Oxford University Press)., pp.185-186. 120 outside the appropriate scope of the law.450 As such, while the two often intersect, one needs to be careful not to confuse correlation with necessity.
An additional point regarding the relationship between law and morality comes as one of pragmatism. While moral debates can afford a level of duality or permit the existence of a deadlock in which no side gains the upper hand to assert its argument over the other,451 this is not permissible in law. To significantly improve the functionality of a legal system, that is, to give a clear indication as to what activities are legal and which are not, a duality or deadlock is impermissible. A legal system should not have actions that exist in some sort of
‘Schrödinger’s legality’ in which an action is both legal and illegal at the same time. To do so would be to abandon those citizens who need to obey that legal system to a lack of clarity.452
Even permitting a deadlock in law, in which a legal system does not decide on the legality of an action, is something which, potentially, cannot exist as not to conclude a judgement on an action or case is to endorse the status quo.
An illustrative example of this difference in nature and purpose between law and morality can be observed in the ethical and legal discussion concerning euthanasia. The polarised nature of the debate as well as the extremely antithetical ontological views and beliefs concerning the right to die, from those of a conservative nature who maintain that the preservation of life is paramount,453 to more liberal views which posit that life can be ended
450 For example, contract negotiations do not necessarily involve any substantial moral component, and yet such work falls squarely under the purview of legality. Equally, cheating on one’s partner is often seen as an immoral act, yet this does not inherently entail that such acts should be considered as concerning legal interventions or penalties. 451 Indeed, there are multiple debates which have been at a deadlock for decades, centuries, or even millennia. 452 The jurist Lon Fuller argued that clarity was itself a fundamental procedural goal to which a legal system must, at least, aspire towards achieving to be valid. He did this by including it as one of his ‘eight desiderata’. See: Lon Fuller, (1969), The Morality of Law (New Haven: Yale University Press)., p.39. 453 Sidney Callahan, (1995) 'The Moral Case against Euthanasia. Catholics Must Articulate Persuasive Arguments to Counter the Cultural Rush toward Assisted Suicide', Health Progress, 76(1), pp.38-40, 53; Daniel P. Sulmasy et al., (2016) 'Non-Faith-Based Arguments against Physician-Assisted Suicide and Euthanasia', The Linacre Quarterly, 83(3), pp.246-257; Margaret Somerville, (2014), Death Talk: The Case Against Euthanasia and Physician-Assisted Suicide, 2nd edn. (Montréal: McGill-Queen's University Press). 121 deliberately in the correct situations,454 means that a compromise between the two is unlikely. To compromise would be to breach the integrity of one’s views about the matter; one either thinks that there are situations in which euthanasia is permissible, or they do not.
Negotiation is not to move on the spectrum closer in line with the argument of your opponent but to abandon your position altogether. Consequently, there is little room to manoeuvre or move the debate forward unless one side is willing to throw in the towel and agree with the other that euthanasia is (im)permissible.
While this is not ideal when it comes to a philosophical and bioethical inquiry, this duality can, to a degree, be tolerated, and the question of the practice’s ethical value be suspended.
For those working in the legal sphere, however, this is not possible. Acceptance of the differences between the two opposing views is not viable, and a choice must be made whether euthanasia is legal or not. Even a refusal to do so is itself a choice in favour of the status quo, which, dependent on circumstances and location, can classify it as either manslaughter or murder.
While it can be the case for those concerned with the ethics of an act to ‘stick to their guns’ and maintain an ontological standoff, this is not an option for law and policymakers. Those who work in the legal sphere must sometimes work in the role of mediators, creating laws and policy that, while failing to satisfy the demands of either side of a debate in their entirety, allow for coexistence with as little agitation as possible.455
With these points in mind then, this thesis holds that it is appropriate and vital to make a distinction between how things are and how things ought to be, and specifically in this thesis, how the law is and how the law ought to be. As has been discussed in Section 3.6, the law regarding healthy limb amputation, and the consequences faced by a surgeon who
454 Peter Singer, (2003) 'Voluntary Euthanasia: A Utilitarian Perspective', Bioethics, 17(5‐6), pp.526-541; Samuel Kerstein, (2019) 'Hastening Death and Respect for Dignity: Kantianism at the End of Life', Bioethics, 33(5), pp.591-600. 455 The legal theorist John Finnis considered law’s role as mediator to be its primary function. He states that “law brings definition, specificity, clarity, and thus predictability into human interactions, by way of a system of rules and institutions so interrelated that rules define, constitute, and regulate the institutions, while institutions create and administer rules, and settle questions about their existence, scope, applicability, and operation.” See: John Finnis, (2011), Natural Law and Natural Rights, 2nd edn. (Oxford: Oxford University Press)., p.268. 122 offers such a surgery, is vague and ill-defined. This ambiguity is not conducive to a healthy legal system as it effectively restricts the actions of a surgeon, causing them to self-regulate and preventing them from acting in a feasibly legal manner, for fear of the uncertainty that their actions are unlawful.
Currently, legislation has yet to draw ‘a line in the sand’ on this matter, and while such ambiguity may be expected and tolerated in the ethical debate around healthy limb amputation, it cannot, nor should it, be the norm in legal circles. Changing the law takes time, but we should not accept that the way the law currently is, is how the law should, nor will always, remain. To do so is dangerous as it effectively measures a legal system’s worth against itself, and thus, “the existing law may supplant morality as a final test of conduct and so escape criticism.”456
4.5.2 THE LIMITS OF THE LAW
In the previous sub-section, I outlined how the function of the law should be separate from the function and values of morality. I explored why it is that one should not look to the law for moral values or evaluations, but instead to moral reasoning itself and how such reasoning can imbue moral legitimacy to legal entities. I also noted how the law is unable to abstain from its responsibility for making rulings when it comes to providing clear boundaries between the legal and illegal in cases of heated disagreement.
What I only hinted at, however, is that in addition to these practical reasons, there are also compelling moral reasons why the actions of individuals should nonetheless be permitted.
This is not because those actions are condemned on an ethical foundation, but rather that such actions are considered to fall outside the legal system’s appropriate scope. These actions would exist beyond the principled jurisdiction within which the state’s authority to compel and coerce its citizens to act according to its will lies. It is to this boundary and Mill’s On Liberty that I now turn.
In the text, Mill explores the relationship between authority and liberty. He argues that any legitimate democracy is one that is constrained by a presumption in favour of liberty.
456 Herbert Lionel Adolphus Hart, (1958) 'Positivism and the Separation of Law and Morals', Harvard Law Review, 71(4), pp.593-629., p.598. 123
Through the book, he celebrates individuality as well as communicating his disdain for conformity via his rejection of the coercion of people’s opinions and behaviours, be that by way of legal or social avenues. On Liberty is, as Mill writes, about “the importance, to man and society, of a large variety in types of character, and of giving full freedom to human nature to expand itself in innumerable and conflicting directions.”457 His is, at its core, a utilitarian approach.
Mill seeks to show the positive effect liberty can have on not only each individual but also for the wider society, specifically focusing on the avoidance of social stagnation and promoting continued societal progression; what he terms ‘experiments in living’.458 Mill highlights the indispensability of liberty in this goal, as it relates to ideas and conceptualisation, writing:
…the peculiar evil of silencing the expression of an opinion is, that it is robbing the human race; posterity as well as the existing generation; those who dissent from the opinion, still more than those who hold it. If the opinion is right, they are deprived of the opportunity of exchanging error for truth: if wrong, they lose, what is almost as great a benefit, the clearer perception and livelier impression of truth, produced by its collision with error.459
For Mill, the liberty of opinions is valuable for two reasons. First, the unpopular opinion may be correct, and to restrict opinions to those of the status quo is to prefer ignorance over truth. Second, even if the outlying opinion is incorrect, by stifling the expression of such opinions, you rob those who hold them of engaging in any meaningful and substantive exchange of ideas and logic — thereby isolating those who hold them from rebuttals and the chance to understand better their opinion as well as the reasons for why it is incorrect.
Mill’s diversity is something to be cultivated, and the oppression of this diversity by a form of authority inevitably does more harm than benefit. Freedom to live according to one’s desires is both a singular and communal good.
457 John Stuart Mill, (2009), The Autobiography of John Stuart Mill (Auckland: Floating Press)., p.249. 458 Mill, On Liberty., p.63. 459 Ibid., p.33. 124
However, Mill does not argue that the state is forever unjustified in its intervention in the lives of those under its control, nor that a restriction placed upon individuals is invariably illegitimate. While his ‘default’ setting for society is one of unbound choice and expression, he does propose that state intervention in the lives of citizens should occur for a singular purpose. Specifically:
That the only purpose for which power can be rightfully exercised over any member of a civilized community, against his will, is to prevent harm to others. His own good, either physical or moral, is not a sufficient warrant. …The only part of the conduct of any one, for which he is amenable to society, is that which concerns others. In the part which merely concerns himself, his independence is, of right, absolute. Over himself, over his own body and mind, the individual is sovereign.460
Mill envisions the freedom to make one’s choices, even when they lead to self-destruction, as paramount. Any paternalistic authority which believes it knows what is best for its citizens is unable to rightly exercise coercive power to force them into making such a state-endorsed decision. The exercising of power can only be justified when that individual, through their actions, harms another. This justification is known as ‘Mill’s Harm Principle’ and is one of the founding doctrines upon which liberal states, such as we have here in the UK, are founded.461
It is easy to see how this principle, and the works of Mill at large, have had such a longstanding role in political and jurisprudential theories concerning the correct and appropriate exercising of power by authoritative bodies. The idea that we should be prevented from harming others is highly intuitive. I would expect that the majority of individuals wish to live in a society in which they are relatively secure in the knowledge that, when they leave their house, they will be safe going about their daily business, and that there are structures, be those legal, political, or societal, in place to safeguard their safety.
Thus, for the sake of utility, there seem to be good reasons to put in place legal measures that restrict the actions of individuals, and consequentially, deter them from harming others.
460 Ibid., p.22. 461 Mill does identify a few groups of people whom he considers falling outside this principle’s jurisdiction including children (see: ibid., p.14) and, to use Mill’s terminology, barbarians (ibid., p.23). 125
As such, throughout the fourth article that constitutes this thesis, I maintain that within a liberal society, the only circumstance in which a state has the legitimate authority to interfere in the personal lives of its citizens is when that citizen would cause harm to another.462 This is of particular pertinence when it comes to what influence the criminal law should have over the actions of clinicians.463 However, while this principle can be seen to be highly intuitive, there is one aspect of it that requires clarification if it is to be of significant robustness to be functional; what is it we mean when we use the term ‘harm’? It is this question which Article Four of this thesis explores, specifically in the case of charging a surgeon with GBH with intent for conducting an elective, therapeutic, healthy limb amputation in a case of BIID.
4.6 CONCLUSION
Within this chapter, I have sought to provide where possible answers, and where not clarity, to several questions that needed addressing before setting off on the writing of the thesis articles. These were as follows:
1. What does it mean to have self-ownership of one’s body?
2. What is the moral standing of those with impairments?
3. How are health and pathology theorised?
4. What is the difference between law and morality, and how does this affect their
societal roles?
462 While I take this position here, this does not necessarily mean that I agree with it wholeheartedly. The principle is employed in solitude because it is with the nature of harm within a legal context that I am interested in here. The appropriate confines of state power and the boundaries at which justifiable judicial coercion should cease have been, and still are, hotly contended. Even those philosophers who, in general, agree with Mill’s Harm Principle, such as Hart, Nagel, and Feinberg, have criticised it for being too simplistic and restrictive. Additional justifications and categories allowing for authoritative and state coercion, while potentially appropriate, do not necessarily affect the justification for state interference when it is done to prevent harm to others. For more on this see: Joel Feinberg, (1984), The Moral Limits of the Criminal Law: Harm to Others, 1st edn. (Oxford: Oxford University Press); Joel Feinberg, (1985), The Moral Limits of the Criminal Law: Offense to Others, 1st edn. (Oxford: Oxford University Press); Joel Feinberg, (1989), The Moral Limits of the Criminal Law: Harm to Self, 1st edn. (Oxford: Oxford University Press); Joel Feinberg, (1990), The Moral Limits of the Criminal Law: Harmless Wrongdoing, 1st edn. (Oxford: Oxford University Press). 463 José Miola, (2016) 'Moralising Medicine: 'Proper Medical Treatment' and the Role of Ethics and Law in Medical Decision-Making' in Sara Fovargue and Alexandra Mullock (eds), The Legitimacy of Medical Treatment, (London: Taylor and Francis). 126
5. What moral reasons are there which can be used as a means of justifying legal
coercion in the lives of individuals?
Responding to the first question, I argued that one has the right to do what they want with their own body and that the state has no legitimate basis upon which to exercised authoritative power to coerce an individual to do otherwise, provided that individual has made a free decision to do so as they wish and does not cause harm to others in the process.
This freedom extends even to those actions and decisions that appear to be bizarre, unusual, or even self-harmful.
Regarding the second question, I argued that the moral status of individuals is not affected by being impaired or non-impaired. Those with impairments are not, in any manner, less qualified to the title of a moral being or of having interests that influence their standing as a moral entity. As such, those with impairments have access to the same rights and liberties as their non-impaired counterparts.
In response to the third question, I argued that theories of health and pathology could be separated into two main camps: (i) naturalistic accounts (such as the BST), which perceive bodily states as being separable from value judgements about those states and grounded in the idea of ‘normal functioning’; and, (ii) normative accounts (such as the SMD) which understand health and pathology as being social constructs and have a focus on the institutional process of ‘medicalisation’. The latter was then supplemented with an exploration of Canguilhem’s The Normal and the Pathological.
Regarding question four, it was shown that law and morality should be seen as separate yet often overlapping systems. Each one has its unique aims, and these can sometimes come into conflict.
Finally, in response to question five, a liberal account of the limits of the law was set out.
According to this account, the only legitimate reason that an authoritative system has for coercing and frustrating an individual’s desires is to prevent them from causing harm to others.
127
Now that the background work and theoretical foundations for this thesis have been laid out, it is time I turn to the four original, peer-review articles that constitute Part Two of this thesis’ exploration of BIID and its ethical and legal predicaments.
128
PART II THE ARTICLES
129
CHAPTER V
ARTICLE ONE:
THE DESIRABILITY OF DIFFERENCE: GEORGES CANGUILHEM AND
BODY INTEGRITY IDENTITY DISORDER
PUBLICATION DETAILS:
Gibson, R.B. ‘The Desirability of Difference: Georges Canguilhem and Body Integrity
Identity Disorder’. Forthcoming in The Journal of Medicine and Philosophy.
5.1 ABSTRACT
Opponents to the provision of therapeutic, healthy limb amputation in cases of Body
Integrity Identity Disorder argue that such surgeries stand in contrast to the goal of medical practice; that being the restoration and maintenance of health. In this paper, I refute such a conclusion via an appeal to the nuanced and reflective model of health purported by
Georges Canguilhem. I examine the conceptual entanglement of the statistically common with the normatively desirable and seek to argue that a healthy body can take multiple forms, including that of an amputee, provided that such a form enables the continuing ability to initiate new norms of existence. Consequentially, the practice of healthy limb amputation in cases of Body Integrity Identity Disorder is not only compatible with the goal of medicine but is potentially the only method of achieving this goal concerning a misunderstood and complex pathological condition.
5.2 INTRODUCTION
But diversity is not disease; the anomalous is not the pathological. Pathology implies pathos, the direct and concrete feeling of suffering and impotence, the feeling of life gone wrong.464
The provision of therapeutic, healthy limb amputation in cases of BIID raises a plethora of ethical issues, not least of which are those concerning whether such surgeries are in direct
464 Canguilhem, The Normal and the Pathological., p.137, emphasis in original. 130 contravention with the purported goal of medical practice; that of restoring and maintaining an individual's health.465 Or, in other words:
Medicine, then, is an activity whose essence appears to lie in the clinical event, which demands that scientific and other knowledge be particularized in the lived reality, of a particular human, for the purpose of attaining health or curing illness, through the direct manipulation of the body, and in a value-laden decision matrix.466
Opponents to the practice express concern that such surgeries inflict significant harm upon an individual as amputation transitions that person from a physically healthy state to one of impairment, and consequently, disability.467 Critics argue that one cannot be both holistically healthy and impaired. Therefore, therapeutic, healthy limb amputation is, by its very nature, incompatible with the restoration of an individual to a healthy state because such a state exists in stark opposition to that of impairment.
Therefore, they argue that the surgery, at best, translates the mental suffering faced by those with BIID into physical disability. It merely converts one potentially treatable state of psychological ill-health into a permanent physical one and, at worst, the surgery has no guaranteed impact on the body-identity incongruity experienced by the individual, and risks not only maiming that person but also condemning them to a lifetime of irreversible physical disability. This physical disability would only exacerbate the suffering caused by a potentially unresolvable identity disorder.
Those who tentatively support the practice argue that while indeed causing a degree of harm to the individual through the physical act of amputation, the procedure should be understood to be comprehensively beneficial, and therefore a potentially viable treatment
465 Leon R. Kass, (1975) 'Regarding the End of Medicine and the Pursuit of Health', The Public Interest, 40, pp.11-42. 466 Edmund D. Pellegrino and David C. Thomasma, (1981), A Philosophical Basis of Medical Practice: Towards a Philosophy and Ethic of the Healing Professions, 1st edn. (New York: Oxford University Press)., p.26. 467 Dotinga, 'Out on a Limb'; Müller, 'Body Integrity Identity Disorder (BIID)—Is the Amputation of Healthy Limbs Ethically Justified?'; Patrone, 'Disfigured Anatomies and Imperfect Analogies: Body Integrity Identity Disorder and the Supposed Right to Self-Demanded Amputation of Healthy Body Parts'; Smith, 'Should Doctors Amputate Healthy Limbs?'. 131 option.468 Proponents argue that the relief from mental suffering that those with BIID achieve after amputation, as indicated in case reports,469 and small-scale empirical studies,470 outweighs the harms caused by the newly created physical impairment and its disabling consequences. While the surgery entails a considerable physical cost, this is not enough to justify a claim that there is a net increase in harm. Consequently, for supporters, therapeutic, healthy limb amputation in cases of BIID conforms to the goal of medical and health services. While surgery does not ensure an individual is afforded a holistically ‘ideal’ health state, it does help individuals get closer to good health than they otherwise would be, especially when there are no less-drastic interventions available.
The assumption that before amputation an individual with BIID resides in a physically healthy state, and afterwards in an impaired one, all other things being equal, underpins this debate. Each side accepts that amputations negatively affect the individual in a strictly functionally physical sense. The two sides differ in their approach to the valuation of this physically healthy state against relief from the mental suffering that those with BIID experience. This common assumption indicates a favouring of a biomedical model of health, illness, and disability — a model that conflates health, and lack thereof, with conformity to a
‘normal’ physical and functional state — in the bioethical literature.
According to such an approach, if one’s functionality is deemed in-keeping with some form of appropriate metric, then one is considered physically healthy. An example of such a model, and the one which I will draw upon in this paper, comes courtesy of Christopher
Boorse’s BST, according to which health is to be understood as a conformity to the
468 Bayne and Levy, 'Amputees by Choice: Body Integrity Identity Disorder and the Ethics of Amputation'; Christopher Ryan, (2009) 'Out on a Limb', Australasian Science, 30(3), pp.32-34; Sullivan, 'Body Integrity Identity Disorder (BIID) and the Matter of Ethics'; Smith, 'Body Integrity Identity Disorder: A Problem of Perception?'; Anahita Dua, (2010) 'Apotemnophilia: Ethical Considerations of Amputating a Healthy Limb', Journal of Medical Ethics, 36(2), pp.75. 469 Sorene, Heras-Palou and Burke, 'Self-Amputation of a Healthy Hand: A Case of Body Integrity Identity Disorder'; Berger et al., 'Nonpsychotic, Nonparaphilic Self-Amputation and the Internet'; Furth and Smith, Apotemnophilia: Information, Questions, Answers, and Recommendations About Self- Demand Amputation. 470 First, 'Desire for Amputation of a Limb: Paraphilia, Psychosis, or a New Type of Identity Disorder'; Noll and Kasten, 'Body Integrity Identity Disorder (BIID): How Satisfied Are Successful Wannabes'; Blom, Hennekam and Denys, 'Body Integrity Identity Disorder'. 132 statistically normal functioning of one's species.471 However, suppose one were to employ an alternative model of health, one which prioritises a qualitative, prospective, and individual adaptive capacity over progression towards a statistically informed goal. In that case, a radically different discussion regarding the viability of therapeutic, healthy limb amputation in cases of BIID emerges.
Fortunately, such a theory of health exists in the form of Georges Canguilhem’s holistic model, which understands health as “the possibility of transcending the norm, which defines the momentary normal, the possibility of tolerating infractions of the habitual norm and instituting new norms in new situations.”472 This approach impacts not only the debate around transableism but may also have broader repercussions for disability studies as it further blurs the perceived boundary between health and disability. In this paper, I demonstrate the utility of this shift in approach and how it can provide a useful foundational analysis to inform future discussion.
My argument proceeds in four parts, the first of which provides a fuller account of BIID.
Second, I consider how the concepts of the normal and the ideal emerged and conceptually merged. Third, I provide a brief outline and comparison of the work of Boorse and
Canguilhem. This outline will pay particular attention to their unique, considerable, and differing contributions to the philosophical understanding of the concepts of health, pathology, and illness. It will also demonstrate how these two schools of thought conceptualise disability. Finally, using the work of Canguilhem, I argue that individuals can, after electing for amputation in cases of BIID, be considered healthy. Consequently, I posit that the practice of therapeutic, healthy limb amputation is compatible with the goals of medical practice. My argument concludes by outlining what the repercussions of such a radical departure from the current trend in BIID discussion, regarding the healthy body, means for the therapeutic, healthy limb amputation debate as a whole.
471 Boorse, 'A Second Rebuttal on Health'. 472 Canguilhem, The Normal and the Pathological., pp. 196-197. 133
5.3 BODY INTEGRITY IDENTITY DISORDER
BIID is a severe, chronic condition in which an individual feels that a particular aspect of their embodiment (most commonly a leg) does not match their self-perceived identity.473 The condition is highly rare, with only 100-200 cases having been reported in the literature, according to Blom et al.474 The presence of the body part in question leads that individual to feel ‘over-complete’.475 Consequently, they describe experiencing significant levels of distress, along with occupational, social, or adjustment impairment, as a result of the limb’s presence.476 The suffering caused by this mismatch exists to such a degree that, in extreme cases, individuals take steps to have the limb amputated; either severely damaging it, so a surgeon has no option but a life-saving amputation, or by severing the entire limb themselves and then seeking medical assistance.
Additionally, some individuals travel overseas to receive black market surgical amputations.477 This was the approach taken by Philip Bondy, a US citizen who died of gangrene two days after travelling to Mexico to undergo a poorly performed amputation.478
Currently, no hospital within the UK offers amputation as a treatment for the condition.479
This lack of therapeutic redress leaves those with BIID stuck in limbo with no foreseeable or actionable solution to their suffering, apart from taking matters into their own hands.
473 While the literature indicates that a desire for lower limb amputation is the most common expression of BIID, several authors have posited that the condition can express itself in other forms. See: Giummarra et al., 'Paralyzed by Desire: A New Type of Body Integrity Identity Disorder'; Blom, Hennekam and Denys, 'Body Integrity Identity Disorder'; Gutschke, Stirn and Kasten, 'An Overwhelming Desire to Be Blind: Similarities and Differences between Body Integrity Identity Disorder and the Wish for Blindness'. However, as the desire for lower limb amputation is the most common form of BIID, it is with this category that I am principally concerned with here. 474 Blom et al., 'Body Integrity Identity Disorder Crosses Culture: Case Reports in the Japanese and Chinese Literature'., p.1419. 475 Brugger et al., 'Limb Amputation and Other Disability Desires as a Medical Condition'; McGeoch et al., 'Xenomelia: A New Right Parietal Lobe Syndrome'. 476 Ryan, 'Out on a Limb: The Ethical Management of Body Integrity Identity Disorder'. 477 Anil Ananthaswamy, (2013) 'This Is What It’s Like to Be at War with Your Body',
Attempts to explain the cause of the disorder can be, broadly, divided into the psychiatric/psychological and neurological. Psychiatric/psychological explanations for the desire, as understood according to the Diagnostic and Statistical Manual of Mental
Disorders: DSM-5,480 have two central hypotheses.
It is sometimes claimed that the desire for amputation is the result of sexual compulsion, establishing it in the paraphilic order of conditions, as proposed by Money481 and
Lawrence.482 Others claim that the desire for amputation results from an identity disturbance, putting it in the identity disorder category of conditions and parallel with
Gender Dysphoria, as suggested by First.483 While BIID is referenced in the DSM-5, albeit as
Body Identity Integrity Disorder, it is not itself a recognised disorder in its own right. The manual features it as a subset of Body Dysmorphic Disorder (BDD) under the ‘other disorders and symptoms’ section. However, the manual makes clear that in cases of BIID,
“the concern does not focus on the limb’s appearance, as it would in body dysmorphic disorder.”484 Thus, it concedes that BIID and BDD are fundamentally separable conditions.485
Neurological explanations aim to account for the desire for healthy limb amputation according to a structural abnormality, either in the brain itself or in the distributed nervous system. Multiple studies have employed approaches including imaging techniques,486 as
480 American Psychiatric Association, Diagnostic and Statistical Manual of Mental Disorders: DSM-5. 481 Money, Jobaris and Furth, 'Apotemnophilia: Two Cases of Self‐Demand Amputation as a Paraphilia'. 482 Lawrence, 'Clinical and Theoretical Parallels between Desire for Limb Amputation and Gender Identity Disorder'. 483 First, 'Desire for Amputation of a Limb: Paraphilia, Psychosis, or a New Type of Identity Disorder'. 484 American Psychiatric Association, Diagnostic and Statistical Manual of Mental Disorders: DSM-5., p.247. 485 Such an erroneous conflation of the two is also commonly observable in the academic literature. For example, see: James Kwok-Kwan Chan, Sophie M. Jones and Anthony J. Heywood, (2011) 'Body Dysmorphia, Self-Mutilation and the Reconstructive Surgeon', Journal of Plastic, Reconstructive & Aesthetic Surgery, 64(1), pp.4-8; Tracey Elliott, (2009) 'Body Dysmorphic Disorder, Radical Surgery and the Limits of Consent', Medical Law Review, 17(2), pp.149-182. 486 McGeoch et al., 'Xenomelia: A New Right Parietal Lobe Syndrome'; van Dijk et al., 'Neural Basis of Limb Ownership in Individuals with Body Integrity Identity Disorder'; Hilti et al., 'The Desire for Healthy Limb Amputation: Structural Brain Correlates and Clinical Features of Xenomelia'; Blom et al., 'The Desire for Amputation or Paralyzation: Evidence for Structural Brain Anomalies in Body Integrity Identity Disorder (BIID)'; Hänggi et al., 'Structural and Functional Hyperconnectivity within the Sensorimotor System in Xenomelia'; Saetta et al., 'Neural Correlates of Body Integrity Dysphoria'. 135 well as physiological experiments,487 as a means of uncovering a causal correlation between a neurological abnormality and the presence of BIID. Despite the interest in BIID from both ethicists and clinicians, the aetiology of the condition remains ill-defined.488 This is likely one of the main contributing factors as to why there is no long-term, effective treatment for BIID except, arguably, to comply with requests for amputation.
Another characteristic feature of BIID is that it is non-delusional. A delusion is a “false belief based on incorrect inference about external reality that is firmly held despite what almost everyone else believes and despite what constitutes incontrovertible and obvious proof or evidence to the contrary.”489 The claim that an aspect of one’s physical embodiment does not correspond to one’s self-perceived identity, as is the case in BIID, does not conflict with external reality; it is a point of view regarding one’s body that is self-validated. The fact that
BIID can be understood as non-delusional differentiates it from other conditions to which it has been compared, such as Cotard’s Syndrome,490 Somatoparaphrenia,491 and BDD;492 conditions which often have, as a core feature, a delusional claim regarding one’s body. This delusional claim, in turn, has an impact on the capacity for free and autonomous decision making regarding one’s body and the medical treatments which one may receive. For example, in BDD cases, surgery to correct an obsessively perceived deficit in one’s appearance is strongly deterred.493 Not only because there is considerable doubt regarding
487 Brang, McGeoch and Ramachandran, 'Apotemnophilia: A Neurological Disorder'; Lenggenhager et al., 'Vestibular Stimulation Does Not Diminish the Desire for Amputation'; Aoyama et al., 'Impaired Spatial-Temporal Integration of Touch in Xenomelia (Body Integrity Identity Disorder)'; Stone et al., 'An Investigation of Lower Limb Representations Underlying Vision, Touch, and Proprioception in Body Integrity Identity Disorder'; Stone et al., 'Lower Limb Peripersonal Space and the Desire to Amputate a Leg'. 488 Barrow and Oyebode, 'Body Integrity Identity Disorder: Clinical Features and Ethical Dimensions'. 489 American Psychiatric Association, Diagnostic and Statistical Manual of Mental Disorders: DSM-5., p.819. 490 Cotard’s syndrome is characterised by any one of a series of delusions which range from the belief that one is missing blood, organs, or body parts, to the insistence that one is, in fact, dead or soulless. 491 Somatoparaphrenia is characterised by the denial of physical ownership of a limb, or an entire side of the body, which those individuals will then attribute to others, both within proximity and at a distance. 492 BDD is a body-image disorder characterised by a persistent and intrusive preoccupation with an imagined or slight defect in one’s physical appearance. This preoccupation causes disruptive repetitive behaviours in response to the appearance concerns (mirror checking, grooming, comparison to others). 493 Natalie M. Lane, (2020) 'More Than Just Filler: An Empirically Informed Ethical Analysis of Non- Surgical Cosmetic Procedures in Body Dysmorphic Disorder', Journal of Medical Ethics, 0, pp.1-5. 136 the efficacy of such operations,494 but also because the ability of those with the condition to consent to such surgeries is questioned due to the delusional foundation upon which decisions for surgeries can potentially be based.495
Where an individual is not considered competent to consent, surgery is only ethical and lawful when performed in that individual’s best interests.496 Consequently, as it would not be easy to claim that operating in these circumstances was in a patient’s best interests, to operate on an individual with BDD in England might constitute, amongst other transgressions, the offence of wounding or inflicting GBH with intent under section 18 of the
OAPA 1861. As such, while amputations can be ruled out in BDD cases, such refusals are harder to justify concerning BIID as the condition itself does not appear to be mutually exclusive with the capacity to provide informed consent.
Finally, the available empirical literature suggests that after amputation, the majority of those with BIID experience a marked and sustained increase in life satisfaction, alongside a decrease in suffering.497 A respondent to Noll and Kasten’s study characterises this improvement in life post-operation when, while responding to a question regarding thoughts one-year after their surgery, wrote:
Since about 11 months I’m living permanently with orthotics or wheel- chair. I live my everyday life freed from burnout and depression, meet
494 The satisfaction rates for those with suspected of having BDD, who undergo treatment, range from 2% to 19%. See: Canice E. Crerand, Martin E. Franklin and David B. Sarwer, (2006) 'Body Dysmorphic Disorder and Cosmetic Surgery', Plastic and Reconstructive Surgery, 118(7), pp.167e-180e; Katharine A. Phillips, (2009), Understanding Body Dysmorphic Disorder (Oxford: Oxford University Press)., pp.237- 238; David Veale, (2000) 'Outcome of Cosmetic Surgery and Diy' Surgery in Patients with Body Dysmorphic Disorder', The Psychiatrist, 24(6), pp.218. 495 Iliana E. Sweis et al., (2017) 'A Review of Body Dysmorphic Disorder in Aesthetic Surgery Patients and the Legal Implications', Aesthetic Plastic Surgery, 41(4), pp.949-954; Lane, 'More Than Just Filler: An Empirically Informed Ethical Analysis of Non-Surgical Cosmetic Procedures in Body Dysmorphic Disorder'. 496 F v. West Yorkshire Health Authority [1989] 1 All ER 545. 497 First, 'Desire for Amputation of a Limb: Paraphilia, Psychosis, or a New Type of Identity Disorder'; Noll and Kasten, 'Body Integrity Identity Disorder (BIID): How Satisfied Are Successful Wannabes'; Sorene, Heras-Palou and Burke, 'Self-Amputation of a Healthy Hand: A Case of Body Integrity Identity Disorder'; Berger et al., 'Nonpsychotic, Nonparaphilic Self-Amputation and the Internet'. 137
friends without anxiety, can enjoy trivial things. I’ve got a new view of life, enriching me. In some way the feeling: I arrived.498
While the requests of those with BIID may certainly seem desperate and radical, the situation in which those individuals find themselves is equally desperate and radical. Those with BIID suffer to a high degree. Suffering is sometimes so extreme it has even led some to carry out self-amputations via methods including homemade guillotines.499 Therapeutic amputations, however, under appropriate surgical conditions, can potentially work as a remedial measure for those with BIID. These surgeries can reduce suffering by aligning people’s embodiment with their self-perceived identities. Furthermore, Smith argues that such surgeries could be considered an act of harm minimisation and risk aversion as the availability of such surgeries would provide a way forward for those with BIID other than risky self-amputations or dubious black-market tourism.500
The perceived appropriateness of therapeutic amputation in cases of BIID is not merely drawn from the benefits and harms they may have but is also linked to the social norms in which these treatments emerge and are employed. These are norms that shape our very concept of health, illness, and disability. Even if amputations were proven to be categorically beneficial for those with BIID in individual cases, the question of whether the surgery could be considered an appropriate medical treatment concerning the overarching goal of medical practice would still be up for discussion. It is to this discussion that I now turn.
5.4 THE NORMAL AND THE IDEAL
The terms ‘normal’ and ‘healthy’ are used virtually interchangeably. There is a common presumption that the healthy state is that which is both objectively and subjectively normal.
Not only is this state the condition in which the majority of individuals reside, but it is also the state in which it is desirable to be as it provides, according to Leriche, “a life lived in the silence of the organs.”501 This silence is prized, and, as such, health is valuable. Deviation
498 Noll and Kasten, 'Body Integrity Identity Disorder (BIID): How Satisfied Are Successful Wannabes'., p.227. 499 Ibid.; Nicholas Tang et al., (2019) 'Ethical Dilemmas in the Surgical Management of Body Integrity Identity Disorder', Australasian Journal of Plastic Surgery, 2, pp.74-76. 500 Smith, 'Body Integrity Identity Disorder: A Problem of Perception?'., p.75. 501 Leriche, 'Introduction Générale; De La Santé À La Maladie; La Douleur Dans Les Maladies; Où Va La Médecine'.; cited in Canguilhem, The Normal and the Pathological., p.91. 138 from this normal state, either via illness or disability, is descriptively abnormal and subjectively undesirable. Nevertheless, this conflation has not always existed.
Before the nineteenth-century, one can argue that a common trend in European medicine was the promotion of an atomistic idea of health, whose knowledge was produced at the
‘bedside’ and whose ‘cosmological centre’ was the sick person upon which disease or disability was borne.502 This concept of health internalised a progression towards a recognisably unattainable perfect ideal, against which everyone lacked in comparison. While medical services moved individuals towards this ideal, failure to obtain it was not only anticipated but inevitable. According to Foucault, during this period, medicine:
…did not begin by analysing a ‘regular’ functioning of the organism and go on to seek where it had deviated, what it was disturbed by, and how it could be brought back into normal working order; it referred, rather, to qualities of vigour, suppleness and fluidity, which were lost in illness and which it was the task of medicine to restore. To this extent medical practice could accord an important place to regimen and diet, in short, to a whole rule of life and nutrition that the subject imposed on himself.503
However, the nineteenth-century brought a popular alternative, one that substituted medicine’s goal of health for that of normality derived from medical statistics, which, as defined by Francis Bisset Hawkins, referred to “the application of numbers to illustrate the natural history of health and disease.”504 Such statistical thinking was further developed by
Bernard, who, in 1856, established a quantitative identity of health and illness, arguing that the difference between the two is merely a deviation of degree from the norm and not an establishment of new modes of existence.505 Therefore, the cure for such conditions is simple; move that individual away from their ‘non-normal’ state and restore them to the ‘normal’ one.
502 Nicholas D. Jewson, (1976) 'The Disappearance of the Sick-Man from Medical Cosmology, 1770- 1870', Sociology, 10(2), pp.225-244. 503 Foucault, The Birth of the Clinic: An Archaeology of Medical Perception., p.35. 504 Francis Bisset Hawkins, (1829), Elements of Medical Statistics: Containing the Substance of the Gulstonian Lectures, Delivered at the Royal College of Physicians: With Numerous Additions, Illustrative of the Comparative Salubrity, Longevity, Mortality, and Prevalence of Diseases in the Principal Countries and Cities of the Civilized World (London: Longman, Rees, Orme, Brown, and Green)., p.2. 505 Claude Bernard, (1957), An Introduction to the Study of Experimental Medicine (New York: Dover Publications)., p.125. 139
This quantitative perspective on pathology and health was used as a template upon which the scientific objectification of disease, as well as its disentanglement from the human experience, was built and which remains influential today. Returning to Foucault:
Nineteenth-century medicine, on the other hand, was regulated more in accordance with normality than with health; it formed its concepts and prescribed its interventions in relation to a standard of functioning and organic structure, and physiological knowledge – once marginal and purely theoretical knowledge for the doctor – was to become established (Claude Bernard bears witness to this) at the very centre of all medical reflection.506
Such a reconceptualisation of the way health and disease are understood was further noted by Lennart Nordenfelt. When discussing the conflict between the ordinary and scientific notions of health and disease, he writes:
Disease is no longer understood in terms of a disruption of our life projects and loss of energy and vitality, but it is configured in terms of the descriptive language of biology. It moves from being an experienced, qualitative disruption of life to becoming a quantitative diminishment of some typical level of function or functional ability.507
As argued by Roy Porter, this shift can be understood to have been instigated, in large part, from the introduction of a reductionist philosophy into the medical agenda.508 This paradigmatic turn, from an unobtainable ideal to a statistically informed and universally obtainable norm, brought a divide between those falling within, and outside of, the range of acceptable deviation; the ‘normal’ and ‘abnormal’ sub-populace. It was a short step from this descriptive differentiation to a subjective division, one which validated the former and demonised the latter.
For illustration, Quetelet, who coined the phrase l’homme moyen or ‘average man’, wrote that
“an individual who epitomized in himself, at a given time, all the qualities of the average
506 Foucault, The Birth of the Clinic: An Archaeology of Medical Perception., p.35. 507 Lennart Nordenfelt, (2001), Health, Science, and Ordinary Language, 1st edn. (Amsterdam: Rodopi)., p.127. 508 Roy Porter, (1996) 'What Is Disease?' in Roy Porter (ed) The Cambridge Illustrated History of Medicine, 1st edn, (Cambridge: Cambridge University Press)., p.94. 140 man, would represent at once all the greatness, beauty and goodness of that being.”509 In contrast, he went on to write that “virtue consists in a just state of equilibrium, and all our qualities, in their greatest deviations from the mean, produce only vices.”510 As such, there is an imperative to be normal as not only was this the foundation for health, but also a morally average construct sustained by equilibrium.
This statistically informed model of health has not been without its critics, including Ron
Amundson,511 Lawrie Reznek,512 Foucault,513 and Nordenfelt.514 However, normality’s conflation with health, plus the implications thereof, has been most extensively interrogated by Canguilhem, particularly in his magnum opus, The Normal and the Pathological.
Canguilhem’s work provides a conceptual avenue through which it is possible to challenge the intuition that the post-amputation body is inherently disabled, and consequently, quantitatively incompatible with the healthy body. Instead, Canguilhem’s approach allows for the conception of the post-amputation body as normal and healthy. Several aspects of
Canguilhem’s method will now be outlined, specifically in the context of disability.
However, to fully illustrate his work, a comparison is needed, one which embodies the statistical approach to health and pathology as outlined - conflating normality with desirability and health - and as such, argues that the post-amputation body is pathological.
Fortunately, such a theory exists in Boorse’s BST.
5.5 BOORSE AND CANGUILHEM
The BST was developed in response to what Boorse perceived as an oversaturation of normative accounts of disease which allow for an explanation of health that exists beyond the absence of disease, or what he later retitles ‘pathological conditions.’515 These normative
509 Theodore M. Porter, (1986), The Rise of Statistical Thinking 1820-1900, 1st edn. (Princeton: Princeton University Press)., p.102. 510 Ibid., p.103. 511 Amundson, 'Against Normal Function'; Amundson, 'Disability, Handicap and the Environment'. 512 Lawrie Reznek, (1987), The Nature of Disease, 1st edn. (New York: Routledge). 513 Foucault, The Birth of the Clinic: An Archaeology of Medical Perception. 514 Lennart Nordenfelt, (2008), On the Nature of Health: An Action-Theoretic Approach, 2nd edn. (Dordrecht: Springer Netherlands). 515 Boorse, 'Concepts of Health'. 141 accounts held that health is not just a medical matter but a social one and, as such, health should be understood per social values, not merely scientific ones.
Opposing this, Boorse argued that the labels of health, illness, and disability are derivable from a statistical understanding of the functioning of an individual against the normal functioning of their species, allowing for acceptable deviation according to that individual’s reference class; “a natural class of organisms of uniform functional design; specifically, an age group of a sex of a species.”516 In the BST, normal is not merely a statistical phenomenon, but the only meaningful point against which bodily deviation can be measured and to which a return qualifies one to claim the label of healthy.
Boorse’s narrow yet necessary inclusion of statistical deviation in the BST via reference classes provides a useful starting point from which to explore Canguilhem’s ideas on health and pathology. Canguilhem explores the matter of individual variation and, in contrast to
Boorse, lauds morphological plasticity. For Canguilhem, diverging from the typical species norm does not necessitate a transition into a pathological state. Instead, he embraces the dynamism of life, arguing that rather than a deviation from a statistical average necessitating pathology, it is, in fact, an intrinsic quality of biological existence, writing that
“individual singularity can be interpreted either as a failure or as an attempt, as a fault or as an adventure.”517
He goes onto quote Bernard and writes that “[a]t every moment there lie within us many more physiological possibilities than physiology would tell us about.”518 For Canguilhem, diversity of structure does not indicate an abandonment of normal biological functioning, as understood by the empirical medical sciences, but is itself a fact of biology. For a single body to deviate from the statistical norm, say regarding the number of limbs that person has, does not make their condition pathological ipso facto. It is merely a physiological and anatomical variation, one on the vast spectrum which biology can produce and which on its own cannot be understood to constitute a pathology, just a variation.
516 Boorse, 'A Second Rebuttal on Health'., p.684. 517 Georges Canguilhem, (2008), Knowledge of Life, 1st edn. (New York: Fordham University Press)., p.125. 518 Cited in Canguilhem, The Normal and the Pathological., p.100. 142
5.6 HOW DO THESE TWO ACCOUNTS UNDERSTAND AND TACKLE
DISABILITY?
Boorse argues that, while the various uses of the term disability make providing a specific definition difficult due to its indeterministic quality, impairment is mainly equivalent to a pathological condition.519 Consequently, the value Boorse ascribes to these states appears to be self-evident; impairments are undesirable in the same manner that pathological conditions are undesirable and as such should be remedied. This position is reinforced when, as he discusses the relationship between theoretical medicine and disability advocacy, he posits that “disease judgements entail nothing about treatment; a fortiori, they do not settle how to apportion our efforts between treating diseased individuals and changing their environment.”520 For Boorse, a disabled state, like a pathological one, requires remediation through adaptation of the environment or by the restoration of that individual’s healthy state. However, at no point is the concept of what it is to be healthy challenged in any fundamental way. To be healthy is still to be statistically familiar and functionally capable. If an individual is neither of these things, they are disabled. Boorse leaves open the possibility, however, of how we should respond to such conditions.
Despite Canguilhem seldom considering disability, there is a growing interest in understanding his work via disability theory.521 Arguably this is because, as Kevin Gotkin notes, “Canguilhem’s approach to ‘disease’ is helpfully aligned with disability scholars’ activists and epistemological goals.”522 These goals include challenging the contemporaneous understanding of the objects of their study via an analysis of the
519 Christopher Boorse, (2010) 'Disability and Medical Theory' in D. Christopher Ralston and Justin Hubert Ho (eds), Philosophical Reflections on Disability, (Dordrecht: Springer)., p.61. 520 Ibid., p.77, emphasis in original. 521 Mary Tiles, (1993) 'The Normal and Pathological: The Concept of a Scientific Medicine', The British Journal for the Philosophy of Science, 44(4), pp.729-742; Sharon L. Snyder and David T. Mitchell, (2001) 'Re-Engaging the Body: Disability Studies and the Resistance to Embodiment', Public Culture, 13(3), pp.367-389; Henri-Jacques Stiker, (2007) 'The Contribution of Human Sciences to the Field of Disability in France over Recent Decades', Scandinavian Journal of Disability Research, 9(3-4), pp.146-159; Catherine Mills, (2015) 'The Case of the Missing Hand: Gender, Disability, and Bodily Norms in Selective Termination', Hypatia, 30(1), pp.82-96; Francisco García, (2015) 'Georges Canguilhem Y La Biopolítica De Las Discapacidades/Georges Canguilhem and the Bipolitics of Disabilities', Sociología Histórica, 5, pp.93-126; Kevin Gotkin, (2016) 'The Norm___ and the Pathological', Disability Studies Quarterly
Moreover, Canguilhem does briefly discuss disability via the proxy of infirmity, which he defines as an anomaly “interpreted in terms of its effects in relation to the individual’s activity and hence to the representation which develops from its value and destiny.”523
Canguilhem’s understanding of disability as an anomaly is vital as the term anomaly, as he employs it, does not denote a normative judgement but is an observation regarding the prevalence of a phenomenon. For Canguilhem, disability is neither good nor bad; it merely is. Evaluative judgements can only be made relating to partitioned normative frameworks, such as their subject’s environment or milieu, of which an individual’s ‘life plan’ is a constituent. Canguilhem continues with this exploration of infirmity, albeit shifting terminology to ‘invalid’, situating it in the larger project of his thesis when he posits that:
For an invalid there exists in the end the possibility of some activity and an honourable social role. But a human being’s forced limitation to a unique and invariable condition is judged pejoratively in terms of the normal human ideal, which is the potential and deliberate adaptation to every condition imaginable.524
Canguilhem postulates that the ‘forced limitation’ which those with impairments and disabilities experience is a universal one felt by those with and without impairments. Both are forever engaged in a discussion between their bodies, their milieu, and their physical environment. Those with a statistically different disposition, however, are disadvantaged in this discussion resultant from their non-conformity with the ‘normal human ideal’. It is this nuanced conceptualisation of disability and impairment that characterises normative approaches to disability, such as the SMD, according to which, “[i]t is society which disables physically impaired people. Disability is something imposed on top of our impairments by the way we are unnecessarily isolated and excluded from full participation in society.”525
If an individual is missing a leg following a therapeutic amputation for BIID, for
Canguilhem, this would not be sufficient for that person to be understood as inhabiting a
523 Canguilhem, The Normal and the Pathological., p.139. 524 Ibid., p.139. 525 Union of Physically Impaired Against Segregation, 'Fundamental Principles of Disability'. 144 pathological state, nor to be considered unhealthy or disabled. Any individual may be considered healthy provided their environment, both physical and milieu, does not, based on their ability or disability, impede their capacity to rise to the obstacles in their path, regardless of their particular construction. In contrast, an inability to instil new norms of life when required by external forces denotes pathology, which, again for this thesis, can be understood in terms of impairment and disability. Crucially, this is not intrinsically linked to being ‘statistically common’; one can be frequent and impaired, disabled and healthy.
With this point in mind, we now return to the act of therapeutic, healthy limb amputation in cases of BIID, intending to interpret the surgical intervention in the context of a disentanglement between healthy and normal.
5.7 HEALTHY LIMB AMPUTATION AND CANGUILHEM
Using the framework provided by Canguilhem, how then are we to interpret the intentional amputation of a healthy limb as a therapeutic intervention in cases of BIID? Objections to the provision of therapeutic amputations in cases of BIID are often predicated on the perception that before surgical intervention, an individual lives as a non-impaired person. This claim is followed by the assumption that as a direct result of surgery, the person becomes impaired and disabled. These assumptions lead to the conclusion that the individual is living with an avoidable harm because of their newfound embodiment. The individual could have not had the surgery and retained their physically healthy body. However, do these two premises necessitate such a conclusion? What is the relationship between physical embodiment and the consequently disabled experience, and what effect does this have on surgical appropriateness?
For Boorse’s BST, as with other naturalistic models of health, there is not so much a relationship between physical embodiment and disabled experience as there is an identical ontological identity. For Boorse, the loss of the limb is the disability. Therapeutic amputation cannot fall within the realm of appropriate medical interventions as it permanently disables an individual, disrupting their ‘species normal’ biological functioning. Adopting this perspective, therefore, the surgery permanently moves the individual into a state of anatomical pathology. This state, according to a naturalist approach to medical services, precludes any viable justification for the surgery. However, Canguilhem’s approach
145 disrupts the fusion of embodiment and disability much in the same manner as that advocated by the SMD.
According to a Canguilhem inspired interpretation of health and disability, an individual missing a limb might be considered a statistical anomaly, but the missing limb does not exclude that individual from being normal nor from being healthy. It may, or may not, restrict the mobility of that individual, and more generally, their ability to initiate new norms of existence in response to the demands of their environment and milieu. According to this approach, only this vector (whether the individual is disadvantaged in their environment post-surgery) determines the permissibility of the operation. If, after receiving the amputation, the individual found their new embodiment was a limitation on their ability to live across a range of milieus and environments, then it would be possible to envision the impairment as pathological for that person. Such a reaction to amputation is what is commonly witnessed as most amputations are not desired. Thus, the operation would be incompatible with the goal of medicine as it would reduce the health of the individual.
However, it is also conceivable that an individual with BIID, who undergoes a therapeutic amputation, will experience an increase in their ability to rise to the demands of their environment and milieu. This is because they may still be normative, according to a
Canguilhem inspired understanding of the term, resulting from their ability to install new norms for themselves. The ability to establish new norms may even be higher than before the amputation because of the individual’s freedom from suffering and body-image incongruity. Thus, the operation would conform to the goal of medical practice as it increases the individual’s capacity for normativity and places them in a healthy state as understood according to Canguilhem.
Such an approach can draw support from the existing academic literature which, while admittedly small, does regularly indicate the effectiveness of amputation as a means for eliminating the suffering caused by BIID and increasing the life satisfaction those post- operative individuals experience.526 Blom et al. recorded that subjects who had obtained an
526 Dyer, 'Surgeon Amputated Healthy Legs'; First, 'Desire for Amputation of a Limb: Paraphilia, Psychosis, or a New Type of Identity Disorder'; Noll and Kasten, 'Body Integrity Identity Disorder (BIID): How Satisfied Are Successful Wannabes'. 146 amputation scored lower on the Sheehan Disability Scale than those who were yet to receive an amputation.527 In other words, the pre-operative BIID sufferers who were classically ‘non- impaired’ experienced more functional disability than those post-operative individuals with a physical impairment. The act of amputation increased their ability to meet the demands of their environment and to alter their norms in response to external and internal influences.
Finally, to advocate for a biomedical model is to advocate for an understanding of health that is unrealistically static in a wildly fluctuating world. To say that an individual is healthy according to a statistically regular expression of their species is to discount the dynamic nature of biology, a nature born out of the need to adjust to changes in one’s environment.
Canguilhem’s approach better accounts for the irreducible fact that both milieus and physical environments change, and to resist this change would be counterproductive to the promotion of health and life.
Much like how the environment is continually changing and never the same at two points, the same is true for biological organisms. For an individual to try and return to a state of biological normality through the application of a cure after becoming pathological is futile as
“[i]n any case no cure is a return to biological innocence. To be cured is to be given new norms of life, sometimes superior to the old ones. There is an irreversibility of biological normativity.”528
While amputation may seem a radical form of treatment, one which significantly and permanently alters that person, such an operation is not medically counterproductive.
Biological innocence, if such a thing ever existed, cannot be regained once lost. Nor can a desire to prevent healthy limb amputations in cases of BIID be based on the idolisation of the ‘untouched’ healthy body; no singular body is independently healthy, and no treatment can restore the body to a ‘factory setting’. All interventions irreversibly change the body.
5.8 CONCLUSION
In this paper, I considered the difficulties that arise from the consideration of providing therapeutic, healthy limb amputations to those individuals with BIID. An account of the
527 Blom, Hennekam and Denys, 'Body Integrity Identity Disorder'. 528 Canguilhem, The Normal and the Pathological., p.228. 147 emergence of the concept of the normal as employed in contemporary discourse was provided. Additionally, I deliberated the underlying assumptions regarding the nature of impairments and how missing a limb is understood concerning the concept of the normal, normality, and statistical frequency, as well as the impact of these concepts on the understanding of what it is to be healthy, pathological, and disabled. Via an analysis of
Canguilhem’s idea of normality, which was contrasted with Boorse’s BST, I argued that electing for a limb amputation as a means of addressing the distress experienced by those with BIID could be considered an appropriate medical measure. This is because to be
‘missing’ a limb can be considered normal in the manner in which Canguilhem employs the term; an ability to rise to the demands of a variety of environments and milieus. Such an increase in adaptational capacity has been preliminarily indicated in several case studies and small-scale empirical projects. However, more research is needed before such a claim can be definitively made.
My conclusion that healthy limb amputation in cases of BIID can be understood as compatible with the goal of medical services, according to a Canguilhem inspired understanding of health and pathology, stands in stark contrast with the current BIID debate landscape. Much of the discussion concerning whether such surgeries are ethically acceptable focus on the idea that before the operation, an individual with BIID is physically healthy and after they are impaired and subsequently disabled. I sought to seed the argument that refutes that assumption. I argued that such a view indicates a simplistic and mechanistic understanding of health that valorises the normal and dismisses the deviant. I intend to spark a discussion that moves away from such a mode of thinking and towards a more reflexive understanding of health and pathology. The literature should be adopting an awareness of health that attributes more significant value to the testimony of those with
BIID and the suffering that they face as a result of their feeling of life gone wrong.
148
CHAPTER VI
ARTICLE TWO:
ELECTIVE IMPAIRMENT MINUS ELECTIVE DISABILITY: THE SOCIAL
MODEL OF DISABILITY AND BODY INTEGRITY IDENTITY
DISORDER
PUBLICATION DETAILS:
Gibson, R.B. (2020) ‘Elective Impairment minus Elective Disability: The Social Model of
Disability and Body Integrity Identity Disorder’. Bioethical Inquiry, 17, pp. 145–155. doi: 10.1007/s11673-019-09959-5.
6.1 ABSTRACT
Individuals with BIID seek to address a non-delusional incongruity between their body- image and their physical embodiment, sometimes via the surgical amputation of healthy body parts. Opponents to the provision of therapeutic, healthy limb amputation in cases of
BIID make appeals to the envisioned harms that such an intervention would cause, harms such as the creation of a lifelong physical disability where none existed before. However, this concept of harm is often based on a normative biomedical model of health and disability; a model which conflates amputation with impairment, and impairment with a disability. In this article, I challenge the prima facie harms assumed to be inherent in limb amputation and argue in favour of a potential treatment option for those with BIID. To do this, I employ the SMD as a means of separating the concept of impairment and disability, and thereby, separate the acute and chronic harms of the practice of therapeutic, healthy limb amputation. I then argue that provided sufficient measures are put in place to ensure that those with atypical bodily constructions are not disadvantaged, the chronic harms of elective amputation would cease to be.
6.2 INTRODUCTION
In 2000, reports that surgeon Robert Smith had carried out two privately funded therapeutic, healthy limb amputations as a means of addressing what he believed to be cases of BIID drew the attention of the world’s media.529 BIID is a non-delusional condition in which an
529 Smith, 'Body Integrity Identity Disorder: The Surgeon's Perspective'. 149 individual feels that an aspect of their physical embodiment, most commonly one of their lower limbs, does not correspond to their self-perceived identity.530 Sufferers describe the presence of the body part in question as making them feel ‘over-complete,’ and thus, they have a strong desire to have the limb amputated in order to address the distress and suffering its presence causes.
Unsurprisingly, the provision of ‘healthy’ limb amputations in BIID cases draws considerable controversy, with arguments presented by opponents and proponents of the practice alike. A common argument employed by opponents to surgical interventions in
BIID centres on the principle of nonmaleficence and the medical injunction of ‘first, do no harm’. Opponents argue that to amputate a medically healthy leg inflicts serious disproportionate harms upon that individual, not only through the amputation process itself and its associated risks but also by inflicting disability onto a previously non-disabled individual. According to this argument, using therapeutic, healthy limb amputation as a means for treating BIID breaches the principle of nonmaleficence as it invariably causes significant harms to the individual as it makes them irreversibly disabled. In response, those who tentatively support the procedure in cases of BIID argue that the harms, including the generation of disability, are potentially outweighed by the benefits, like a significant decrease in suffering and the minimisation of potential future risks.531
Both sides of the nonmaleficence debate assume that amputation of a healthy limb inevitably leads to that individual becoming disabled. They merely disagree on whether the relief from suffering is worth the cost of having a disability. Both sides, therefore, purport that
530 As explored in Chapter Two, whilst the literature indicates that a desire for single lower limb amputation is the most common expression of BIID, and as such the form which this paper will focus on, several authors have posited that the condition can express itself in other forms. See: Giummarra et al., 'Paralyzed by Desire: A New Type of Body Integrity Identity Disorder'; Blom, Hennekam and Denys, 'Body Integrity Identity Disorder'; Gutschke, Stirn and Kasten, 'An Overwhelming Desire to Be Blind: Similarities and Differences between Body Integrity Identity Disorder and the Wish for Blindness'. 531 Bayne and Levy, 'Amputees by Choice: Body Integrity Identity Disorder and the Ethics of Amputation'; Ryan, 'Out on a Limb: The Ethical Management of Body Integrity Identity Disorder'; Smith, 'Body Integrity Identity Disorder: A Problem of Perception?'; White, 'Body Integrity Identity Disorder Beyond Amputation: Consent and Liberty'. 150 amputation is the leading causal factor of disability, and this assumption underlies their position whether they seek to condemn or justify the practice.
I seek to disrupt this underlying assumption by questioning whether a healthy limb amputation inherently leads to disability and is, therefore, a harmful procedure per se. Can the harms commonly associated with amputation, those being the creation of a disability where none existed before, be disentangled from the physical act of removing a person’s limb? If this is the case, issues associated with nonmaleficence, as they relate to disability generation, can be evaded in the debate. I argue that the elective amputation of a ‘normal’ limb does not always lead to disability.
First, I will explore, in greater detail, the employment of the principle of nonmaleficence as an argument against using healthy limb amputation for therapeutic purposes in cases of
BIID, as advanced by W.J. Smith,532 Caplan,533 Müller,534 and Bruno.535 From these arguments,
I then draw on the critical distinction between the potential acute harms of amputation - such as infections, thromboses, and paralysis - and the purported chronic harm which this paper is principally concerned with; that of moving from a state of non-disability to one of disability. I also explain why the distinction between these two groups of harms matters.
Second, an introduction to the model, which will be employed as a means of separating the act of amputation, along with the imparting of impairment, from the harms commonly associated with disability, will be given; that being the SMD. This separation of impairment and disability to the argument of nonmaleficence as put forward by opponents of therapeutic, healthy limb amputation will then be made. I suggest that by employing a more complex and nuanced definition of disability, it is possible to envision the generation of impairments through the provision of healthy limb amputation without it necessarily creating a lifetime of disability for that individual.
532 Smith, 'Should Doctors Amputate Healthy Limbs?'. 533 Dotinga, 'Out on a Limb'. 534 Müller, 'Body Integrity Identity Disorder (BIID)—Is the Amputation of Healthy Limbs Ethically Justified?'; Müller, 'Amputee Envy'; Müller, 'BIID – under Which Circumstances Would Be Amputations of Healthy Limbs Ethically Justified'. 535 Sullivan, 'Body Integrity Identity Disorder (BIID) and the Matter of Ethics'. 151
I then conclude with what such an application would mean for the ethical evaluation of therapeutic, healthy limb amputation in cases of BIID overall.
6.3 NONMALEFICENCE AND BIID
One of the central tenets within medical and clinical practice is that of primum non nocere, or
‘first, do no harm’. This obligation sits at the centre of the principle of nonmaleficence as understood by Beauchamp and Childress’ mid-level principlist theory of ethics.536 According to them, the principle of nonmaleficence requires that “[o]ne ought not to inflict evil or harm.”537 As such, this principle requires of us, and surgeons not only considering providing therapeutic, healthy limb amputations but all interventions, that we act with intention to refrain from causing harm to others. It is this requirement that is left unfulfilled when surgeons carry out such procedures according to opponents of the practice of healthy limb amputation in cases of BIID. For example, W.J. Smith argued that:
[P]hysicians are duty bound to “do no harm,” that is, they should refuse to provide harmful medical services to patients-no matter how earnestly requested. (Thus, if I were convinced that my appendix was actually a cancerous tumor, that would not justify my doctor acquiescing to my request for an appendectomy.) Finally, once the limb is gone, it is gone for good. Acceding to a request to be mutilated would amount to abandoning the patient.538
The comparison W.J. Smith attempts to make between the belief that one’s appendix is cancerous and BIID in this passage is fallacious. The belief that one’s appendix is cancerous is framed as non-factual and, as such, can be considered a delusion — an idiosyncratic belief maintained despite a contradiction with empirical reality. However, those with BIID recognise that the body part in question is theirs and is healthy. Their issue is that it does not correspond with their bodily image or identity, something which cannot be said to contradict empirical fact. Therefore, such a belief cannot be said to be delusional, merely unusual.
536 Mid-level here refers to a theory which sits in between the top-down theoretical approaches (such as utilitarianism and deontology) and bottom-up particularist approaches (such as normative ethics or casuistry). Mid-level theories typically use moral principles or rules as a means of constructing a view of a case which incorporates concerns of both the particular and the theoretical. 537 Beauchamp and Childress, Principles of Biomedical Ethics., p.152. 538 Smith, 'Should Doctors Amputate Healthy Limbs?'. 152
However, W.J. Smith’s view on healthy limb amputations remains clear. For him, to provide such amputations equates to a harmful medical service; a relinquishing of the patient’s best interest to that of their condition resulting in a literal surrender to the desire. Caplan also expresses similar views and argues that healthy limb amputations would violate the
Hippocratic Oath because:
The cure is not to yield to the illness and conform to the obsession. And this is not just about 'do no harm.' It's also about whether (sufferers) are competent to make a decision when they're running around saying, 'Chop my leg off.'539
For Caplan, providing healthy limb amputations disregards other potential treatment options such as psychotherapy, cognitive behavioural therapy, or psychopharmacology, and instead harms the patient at their request.
Müller provides a similar argument against healthy limb amputations in cases of BIID when, while discussing appeals to the principle of nonmaleficence, she argues:
According to the principle of nonmaleficence physicians must not perform amputations without a medical indication because amputations bear great risks and often have severe consequences besides the disability, for example, infections, thromboses, paralyses, necrosis, or phantom pain… Above all, an amputation causes an irreversible damage that could not be healed, even if the patient’s body image would be restored spontaneously or through a new therapy.540
Müller makes explicit the distinction between the potential harms associated with surgical intervention in general, which will be referred to as acute harms, and the purported harms that come as a direct result of amputation, which will be referred to as chronic harms; the generation of what Müller categorises as a disability, one which results from ‘leglessness’.
Differentiating between the two, particularly in the BIID/healthy limb amputation debate, is significant because there are arguments that adequately address the concerns regarding the acute harms in amputation. First, the ambiguous nature of the principle of ‘first, do no harm’. Second, the justification of the provision of similar surgical procedures through an
539 Dotinga, 'Out on a Limb'. 540 Müller, 'Body Integrity Identity Disorder (BIID)—Is the Amputation of Healthy Limbs Ethically Justified?'., p.41. 153 appeal to a cost-benefit analysis. The pre-existence of these arguments is decisive because by addressing the acute harms associated with healthy limb amputation via these arguments, it allows the debate to move forward and consider the chronic harm of an absentee lower limb separately.
First, though the concept of ‘first, do no harm’ has a long tradition within the medical and health services, as argued by Ryan, the principle itself is vague, and how exactly it is meant to be applied is not always clear.541 Certainly, for the majority of surgeries to take place, healthy tissue must be damaged in order to gain access to the surgeon’s target. Using W.J.
Smith’s example of an appendectomy, an incision must be made through what is often healthy abdominal tissue to remove the inflamed organ. This incision can, by most accounts, be considered harm, and, while the harm caused will be expected to heal, the principle of nonmaleficence is nonetheless breached as healthy tissue is intentionally damaged.
However, this does not raise ethical issues because the benefits which such a surgery provides to that individual (no longer suffering from appendicitis) are considered secondary to the practical necessities required in order to carry out such an operation. Consequently, as suggested by Daniel Sokol, it may be necessary to revise the dictum of ‘first, do no harm’ into a more applicable and less ambiguous ‘first, do no net harm’.542 This refinement would more realistically reflect the reality that while the majority of surgical and clinical interventions constitute a level of harm, or in other words, maleficence, the clinician desires that the benefits conferred by such interventions outweigh those harms.
Second, for any surgery, including elective amputation, a particular group of risks are shared. Surgery can lead to unfortunate harmful complications, including infection, pneumonia, blood clotting, allergic reactions to anaesthesia, and even death. This is one reason why unnecessary surgery is often deterred. However, when performing other forms of surgery, these harms, while considered, do not prevent operations from taking place.
There is the acknowledgement that despite the potential harms intrinsic to surgery, the benefits which such procedures provide outweigh the potential costs or harms. Returning to the example of an appendectomy, it carries with it the risk of wound infection, bleeding
541 Ryan, 'Out on a Limb: The Ethical Management of Body Integrity Identity Disorder'., p.27. 542 Sokol, '“First Do No Harm” Revisited'. 154 under the skin, scarring, abscesses, and even a hernia.543 However, the procedure is still routinely carried out because the expected benefit outweighs these potential harms.
Consequently, the surgeon expects there to be no net increase in harm.
This same line of reasoning can be taken concerning elective amputation in BIID cases. If there was evidence to suggest that the benefits of elective amputation were expected to provide a positive cost-benefit analysis, then the general risks associated with surgical interventions, or the acute harms of amputation, could be justified as acceptable risks and harms. Such an argument is proposed by proponents of the practice, such as Bayne and
Levy.544 Müller herself, a highly vocal critic of the intervention, acknowledges this when, while discussing the principle of beneficence, concedes that “[a]mputations could be justified according to the principle of beneficence if their benefit for the patient would override their harm.”545 In order to demonstrate this, however, evidence would need to be provided.
The existence of such evidence which demonstrates the benefits of healthy limb amputation for those with BIID is a matter of contention in and of itself. This is because the only evidence which exists regarding the procedure's efficacy is anecdotal,546 individual case studies,547 or relatively small-scale empirical research.548 What would likely be required in order to demonstrate the effectiveness of healthy limb amputation in cases of BIID would be a large-scale, peer-review, empirical study. However, such a study would be subject to a
‘catch-22’ in that for it to gain the desired data, the surgeries would have to take place.
543 National Health Service, (2016) 'Treatment - Appendicitis', NHS,
However, the surgeries are unlikely to take place on a large enough scale until the provision of such data.
While an appeal to the arguments commonly employed to justify other forms of surgery can be used to address the acute harms of healthy limb amputations, they are less effective at addressing the potential chronic harms caused by the surgery. Particularly the chronic harm which can be understood to be unique to the provision of this form of surgical intervention in cases of BIID; that being the elective creation of a disability where none existed before. To illustrate this point, let us employ a comparison to cosmetic surgery.
Cosmetic surgery is often, but not exclusively, carried out for aesthetic reasons.549
Procedures such as liposuction, breast enlargement, penis lengthening, and buttock lifts are all forms of elective surgery which arguably provide no therapeutic benefit, merely the adjustment of one’s physical self towards a self-idolised aesthetic standard or body construction; a construction informed by societal, economic, and other ‘external’ influences.550 It is the provision of cosmetic surgery for aesthetic reasons, and the denial of healthy limb amputation for therapeutic purposes, which some proponents of the latter consider unjust. As Bayne and Levy write:
We allow individuals to mould their body to an idealized body type, even when we recognize that this body image has been formed under the pressure of non-rational considerations, such as advertising, gender- norms, and the like. If this holds for the individual seeking cosmetic surgery, what reason is there to resist a parallel line of argument for those seeking amputation?551
The reason to resist, according to Patrone, is that, unlike cosmetic surgery, healthy limb amputation deliberately results in a disability. He writes:
Even if we agree that the motives of both BIID patients and of some seeking cosmetic surgery are irrational, the analogy might be thought to break down, however, when we consider the fact that, at least ideally, no
549 Nicola R. Dean, Kristen Foley and Paul Ward, (2018) 'Defining Cosmetic Surgery', Australian Journal of Cosmetic Surgery, 1(1), pp.95-103. 550 Nuffield Council on Bioethics, (2017) Cosmetic Procedures: Ethical Issues: A Guide to the Report. 551 Bayne and Levy, 'Amputees by Choice: Body Integrity Identity Disorder and the Ethics of Amputation'., p.81. 156
disability follows from the putatively non-problematical cases of cosmetic surgery.552
References to disability are ubiquitous in BIID related literature. However, I find Patrone’s assumption, and the assumption made by all those authors mentioned so far, that disability must necessarily follow from a healthy limb amputation problematic. If demonstrated that disability is not a direct result of amputation, then the objection to the provision of healthy limb amputation in cases of BIID, which appeals to the chronic harms of the procedure, would be addressed. I employ the SMD to demonstrate that healthy limb amputation does not directly cause disability.
6.4 THE SOCIAL MODEL OF DISABILITY
Biomedical models of health conceive of disability as a failure of biological functioning.
According to such models, “health is the absence of disease, and diseases (I include deformities and disabilities that result from trauma) are deviations from the functional organization of a typical member of a species.”553 Such models establish illness, deformity, and disability wholly within the individual. As such, through the utilisation of science and medicine to cure or remove disease, deformity, or disability from an individual, it is possible to restore them to full health.
The SMD offers an alternative to this mechanistic understanding of the body by shifting attention from the individual to factors within their environment, including social oppression, cultural discourse, discriminative prejudices, economic influences, and physical barriers. The SMD’s goal, according to Shakespeare, is to provide “the structural analysis of disabled people’s social exclusion,”554 with the final aim being the identification and altogether removal of those barriers which unjustly exclude impaired people’s participation in society. One critical method utilised by the model to achieve this, and that which
552 Patrone, 'Disfigured Anatomies and Imperfect Analogies: Body Integrity Identity Disorder and the Supposed Right to Self-Demanded Amputation of Healthy Body Parts'., p.543. By ‘non-problematic cases of cosmetic surgery’ I assume Patrone is referring to surgeries that do not raise any bioethical concerns other than those commonly associated with cosmetic surgery (e.g. undue pressure to conform to an ideal standard, reinforcement of an unrealistic standard of beauty, the blurring of the boundary between medical caregiver and clinical sales representative). 553 Norman Daniels, (1985), Just Health Care, 1st edn. (Cambridge: Cambridge University Press)., p.28, emphasis and addition in original. 554 Shakespeare, 'The Social Model of Disability'., p.214. 157 differentiated it from other paradigms in disability studies during its emergence in the 1960s and 1970s, is how it relocates disability, moving its causal factor from the individual and placing it in that person’s environment.
The SMD argues that disabilities, be they cognitive, emotional, physical, or functional, originate not as a result of individual biological ‘deficits’. Disability’s true origin is found in the way in which an individual’s environment is unable to accommodate their atypical needs; needs which result from that person’s impairment, such as ‘losing’ a leg via amputation. The SMD argues that “[i]t is society which disables physically impaired people.
Disability is something imposed on top of our impairments by the way we are unnecessarily isolated and excluded from full participation in society.”555 As such, disability is “the disadvantage or restriction of activity caused by a contemporary social organisation which takes little or no account of people who have physical impairments and thus excludes them from participation in the mainstream of social activities.”556 Consequently, having a leg removed through amputation would be an impairment. However, this will only cause disability if that individual exists in an environment constructed in a manner that means their impairment unjustly puts them at a disadvantage, which, unfortunately, many of us do.
What this disentangling of disability and impairment means, and what the SMD advocates, is that it is theoretically possible for a society to exist in which an individual with an impairment, such as a lower limb amputation, does not experience any more difficulties in seeking out or securing opportunities than those without impairments. This equality in obstacle and opportunity results from an environmental construction which means that such biological differences amount to a mere-difference, much in the same manner as height, eye colour, or dietary habits. Consequently, this model offers the potential to decouple impairment and disability fully, and thereby envision the possibility of having an impairment without a disability, and vice versa, provided that the social, economic, political,
555 Union of Physically Impaired Against Segregation, 'Fundamental Principles of Disability'. 556 Ibid. 158 and institutional environments, amongst others, are constructed in such a way to allow this to occur.557
6.5 THE SOCIAL MODEL OF DISABILITY AND ELECTIVE AMPUTATIONS
To take a SMD view of impairment and disability as a starting point for the ethical analysis of elective amputations in cases of BIID, we are faced with a different question from the one which opponents and proponents to the practice such as Müller, Caplan, Bruno, W.J. Smith,
Bayne and Levy conceptualise and attempt to address through their indicated appeal to biological normativity or via a favourable cost-benefit analysis. The central question concerning the principle of nonmaleficence, regarding BIID, has been whether it is ethically permissible to amputate a healthy leg and impart on someone a disability.
However, when employing the SMD as foundational bedrock from which to examine the discourse around the provision of healthy limb amputation in cases of BIID, we find a different question to answer. That question being, is it ethically permissible to amputate a healthy leg and impart on someone an impairment? This change in question originates from the decoupling of disability and impairment, and the possibility of having one without the other. To amputate a leg is still to emphatically create an impairment, as understood according to the SMD. However, according to the model, this is neither sufficient nor necessary for disability to occur.
This formation of a new question does not overwrite the one classically conceptualised in the nonmaleficence debate of healthy limb amputation. It does mean, however, that an answer is needed for both; whether it is ethically permissible to create an impairment and whether it is ethically permissible to create a disability, both in cases where none existed
557 It should be noted that while this distinction between impairment and disability is useful as a means of counteracting the nonmaleficence arguments presented by those opposed to elective, healthy limb amputations in cases of BIID, that is not to say that this distinction is itself unproblematic. The title of impairment relies on an ill-founded concept of ‘normal’ functioning from which a deviation occurs, a concept that those with BIID can be understood as rejecting via their need for amputation. While it is beyond the scope of this paper to explore this juxtaposition fully, this conceptual distinction can still prove to be useful as a counterargument against appeals to the principle of nonmaleficence as it relates to harm in the context of BIID. 159 previously and have been elected. It is to these two questions that I now turn, starting with the question regarding the creation of disability.
6.6 THE CREATION OF DISABILITY IN CASES OF BIID
As discussed, the aim of the SMD is the removal of those factors that cause disability.
Consequentially, an SMD approach to the question of whether the generation of disability is permissible would garner the same answer as opponents to the provision of healthy limb amputations like Caplan, W.J. Smith and Müller already give. They would argue that the generation of disability, where none existed before, does breach the principle of nonmaleficence because disability, according to both groups, is a harm. However, where these groups diverge as a result of their differing definitions of disability is in their methods for the prevention, and eventual elimination, of disability.
Opponents to healthy limb amputation in BIID cases, who appeal to the principle of nonmaleficence, often indicate an allegiance towards biomedical models of disability. This is characterised by Sullivan, who, when discussing Bruno’s views on BIID, writes:
Disability, in Bruno’s schema is, then, the antithesis of able-bodiedness (as a natural developmental state) rather than its complement. Disability is unnatural insofar as it is the result of an accident (whether congenital or social): It is, by definition, both an aberration and an abomination and as such, is literally undesirable.558
Those who oppose healthy limb amputation utilising the principle of nonmaleficence show a similar preference for addressing the identity incongruity those with BIID face via an alteration of identity rather than of the physical embodiment. Amputation gives someone
‘an aberration and an abomination’. As such, opponents appear to wish to preserve what they consider a complete and healthy body, thereby avoiding the creation of disability.
However, according to the SMD, such a biomedical approach may impact the surface-level,
‘symptomatic’ expression of disability, but not its source. Environmental factors would still create and reinforce disabilities that discriminate against those with atypical constructions.
The way to address the creation and persistence of disability, according to the SMD, is through societal adaptation, not biological uniformity. Such adaptation would result in
558 Sullivan, 'Body Integrity Identity Disorder (BIID) and the Matter of Ethics'., p.584. 160 those of all bodily constructions being able to access available opportunities, regardless of impairment, elective or otherwise.
This goal is, of course, subject to real-world limitations, complications, and resistance, when it comes to the ability and willingness of individuals and societies to adapt to accommodate better those with atypical constructions, with some impairments requiring more alteration than others. However, I would contend that the degree of alteration required should not be a foundation for an exclusionary argument for those with more complex impairments, but rather a call for more investment and considered planning in how these individuals can be better brought into the mainstay of society.
6.7 THE CREATION OF IMPAIRMENT IN CASES OF BIID
Elizabeth Barnes attempts to address whether it is acceptable to create an impairment where none existed before.559 Barnes defends the ‘mere-difference theory of disability’ against causation-based objections, such as making it permissible to ‘inflict’ an impairment on an otherwise non-impaired individual. During her rebuttal, Barnes utilises three key categories through which one can cause impairments and upon which she centres her defence. Taking
Barnes’ lead, I will use the first of these three categories to answer the question before us, specifically concerning BIID; this category is the causing of a non-impaired person to become impaired.560
Firstly then, to facilitate the discussion around the ethical considerations at play when an autonomous adult causes another autonomous adult to become impaired, Barnes uses the following example:
559 While the term of choice for Barnes is ‘disability’, she does note that “[i]f you accept a terminological distinction between “disability” and “impairment,” with “disability” referring to the socially mediated effects of impairments, then you should reinterpret what follows as talk of causing impairments” (Elizabeth Barnes, (2014) 'Valuing Disability, Causing Disability', Ethics, 125(1), pp.88- 113., p.89) As this paper utilises such a terminological distinction, Barnes’ work in the field of valuing disability applies to the theory purported in this paper. 560 The second and third categories which Barnes identifies and explores are the creation of an impaired person without transition costs and causing an impaired person to exist instead of a non- impaired person. The reason for the focus on the first category is due to its relevance to the creation of impairment in cases of BIID as the example provided by Barnes utilises an existing individual with an already established identity and sense of self, something which the second and third categories alter or exclude. 161
Amy and her nondisabled friend Ben work in a lab. After hours one day, they are playing around with lasers. Ben is not wearing any protective eyewear, and Amy knows that if she directs the laser beam at his eyes he is at risk of permanent vision loss. Nevertheless, Amy does not take any precautions to avoid directing the beam at Ben’s eyes. Ben becomes permanently blind. When Ben confronts Amy angrily about what she has done, Amy explains that she hasn’t done anything wrong. It’s not any worse to be disabled than to be nondisabled. So while she has made Ben a minority with respect to sight, she hasn’t made him any worse off.561
In response to this case, Barnes assumes that readers would feel that Amy had done something grossly wrong when she blinds Ben. Barnes supports this initial reaction to
Amy’s actions via an appeal to three arguments: the non-interference principle, the risk of such action, and the transition costs.
The non-interference principle, as understood by Barnes, requires of us that “you shouldn’t go around making substantial changes to people’s lives without their consent (even if those changes don’t, on balance, make them worse off).”562 As such, by blinding Ben, Amy substantially and unjustly interferes in his life, thereby breaching the non-interference principle. This breach would occur even if the injury which Amy inflicts upon Ben were reparable, or even if Amy does not injure Ben at all but exercises non-consensual, undue influence over his life.
The risk factor of such an action refers not to the potential physical harm that such behaviour could lead to but the risk to an Aristotelian concept of eudaimonia, or
‘flourishing’.563 Barnes posits that Ben may, after his blinding, adapt well to his new impairment and lead a life full of flourishing. However, there is the substantial risk that this will not be the case, and in fact that Ben will perceive his blindness as something which limits him, his choices, and his overall life satisfaction. This exposure to risk is a harm, and, as Amy is not in a position to know which of these two outcomes is more likely, she acts unethically by exposing Ben to such a high-risk factor, regardless of whether he eventually flourishes in his new impaired state or not.
561 Barnes, 'Valuing Disability, Causing Disability'., p.95. 562 Ibid., p.95. 563 See: Nicomachean Ethics, I.7. 1097b14-1145b7. 162
Finally, Barnes refers to the transition costs of moving from non-impaired to impaired, writing that:
[T]here’s a big difference between being disabled and becoming disabled. Many people find being disabled a rewarding and good thing. But there is an almost universal experience for those who acquire disability—variously called adaptive process or transitions costs—of great pain and difficulty associated with becoming disabled. However happy and well-adjusted a disabled person ends up, the process of becoming disabled is almost universally a difficult one.564
There is a strong case that those with impairments do have fulfilling lives, more so than typically presumed by the non-disabled and non-impaired;565 a phenomenon referred to as
‘The Disability Paradox’.566 However, this fulfilment can be understood to not include the difficulties in the period in which a person transitions from non-impaired to impaired and consequently disabled. This transition is often difficult as it usually requires the abandonment, or at least radical adaptation, of one’s goals and way of living.567 Therefore, becoming disabled is a harmful process, even if being disabled is not.
While being impaired may theoretically be understood as a ‘mere-difference’ and independently non-harmful, that is categorically different from the potentially harmful process of becoming disabled. The radical and necessary adaptation of one's way of life and alteration of one's goals, as a result of circumstances beyond one’s control, can be highly distressing and harmful. Referring to Barnes’ previous point regarding ‘flourishing’, such non-elective changes put at significant jeopardy the securing of one’s eudaimonia.
While the example presented by Barnes, and used in this paper, is useful for exploring the issues around the creation of impairment where none existed before, it does not perfectly
564 Barnes, 'Valuing Disability, Causing Disability'., p.96. 565 Gary L. Albrecht and Patrick .J. Devlieger, (1999) 'The Disability Paradox: High Quality of Life Against All Odds', Social Science & Medicine, 48(8), pp.977-988; Gary L. Albrecht and Paul C. Higgins, (1978) 'Rehabilitation Success: The Interrelationships of Multiple Criteria', Journal of Health and Social Behavior, 18(1), pp.36-45; Erik Landfeldt et al., (2016) 'Health‐Related Quality of Life in Patients with Duchenne Muscular Dystrophy: A Multinational, Cross‐Sectional Study', Developmental Medicine & Child Neurology, 58(5), pp.508-515. 566 Albrecht and Devlieger, 'The Disability Paradox: High Quality of Life Against All Odds'. 567 Jeff McMahan, (2005) 'Causing Disabled People to Exist and Causing People to Be Disabled', Ethics, 116(1), pp.77-99. 163 match onto cases involving those individuals with BIID. This mismatch is because an individual with BIID, seeking a healthy limb amputation, is actively looking to gain an impairment. In Barnes’ example, Ben does not seek an impairment; Ben does not desire to be blind. It is something that is forced upon him by circumstances, which are the result of
Amy’s actions. This means that the factors which Barnes identifies as being influential regarding the creation of impairment—the non-interference principle, the risk of such action, and the transition costs—as well as the analysis that follows them, while still relevant and employed in BIID ethical debate, can be understood in a different light. It is this alternative take on these principles that will now be examined.
6.7.1 THE NON-INTERFERENCE PRINCIPLE
Regarding the non-interference principle, which states that one should not make substantive changes to another’s life without their consent, we can refer to the fact that those with BIID request to have an impairment. Such requests are in thematic contradiction to the example of
Ben’s blinding as presented by Barnes. Ben did not wish to be blind; he became blind as a result of his and Amy’s reckless actions. Contrasting this, those with BIID would not be subjected to amputations against their will, rather the opposite. They would receive an amputation at their request.
A surgeon providing such a surgical intervention would not be in breach of the non- interference principle in the same manner as Amy. They would not be substantially interfering in another person’s life without that person's consent but acting in a manner to help bring that person’s desire into being. A surgeon carrying out an elective amputation would be facilitating a therapeutic intervention, not interference.
A potential counterargument and one which often appears in BIID debate are that those with BIID cannot consent to such medical procedures due to the influence which the disorder exhorts over that person’s wishes and desires. Those with BIID are, according to such an argument, unable to exercise free and independent thought when it comes to that specific aspect of their own life. While they may be able to consent and exercise autonomy in the rest of their decisions, regarding their ability to give informed consent for such substantial surgery, they lack capacity. This lack of capacity would mean that any surgeon
164 carrying out an elective amputation would be operating on an individual without their consent to do so, and consequently, they breach the non-interference principle.
Such a lack of capacity, however, cannot be assumed. It would need to be demonstrated, and that, as already mentioned, would be difficult as those with BIID do not express a delusional view, merely an unusual one. Furthermore, even if it could be established that someone with
BIID was delusional, this, in and of itself, would not necessarily imply an incapacity to make decisions.568
6.7.2 THE RISK FACTOR
Regarding the risk factor of providing elective amputations to those with BIID, and the concern of putting in jeopardy an individual’s potential for flourishing, I would argue that such surgical interventions secure and promote flourishing rather than endanger it. Elective amputations in cases of BIID do not present exposure to substantial risk factors in the same manner, or to the same degree, as undesired impairments.
According to the evidence available, those with BIID are, in fact, more likely to flourish after an elective amputation than they did before. Both of the individuals who received amputations from Robert Smith have reported that they are delighted with the results of their procedures,569 as were nine participants who took part in First’s study who had secured amputations.570 This increase in satisfaction, and concordantly a promotion of flourishing, was also noted by Noll and Kasten. They reported that, out of their interviewees who had achieved an amputation, not only did none regret their surgery but also that “[m]ost of the persons report that they had suffered more from BIID than from any disadvantage in a life as a disabled person,” and “[t]here are no reports of regrets even when complications occurred.”571 Reports of similar increases in satisfaction and flourishing can also be found in the works of Pennie Taylor;572 Rianne M. Blom, Raoul C. Hennekam, and Damiaan Denys;573
568 See: §.3.6.1; Re C [1994] 1 WLR 290; [1994] 1 All ER 819. 569 Dyer, 'Surgeon Amputated Healthy Legs'. 570 First, 'Desire for Amputation of a Limb: Paraphilia, Psychosis, or a New Type of Identity Disorder'. 571 Noll and Kasten, 'Body Integrity Identity Disorder (BIID): How Satisfied Are Successful Wannabes'., p.231. 572 Taylor, ''My Left Foot Was Not Part of Me''. 573 Blom, Hennekam and Denys, 'Body Integrity Identity Disorder'. 165
Bertrand D. Berger et al.;574 Alicia J. Johnson, Sook-Lei Liew, and Lisa Aziz-Zadeh;575 and
Furth and Smith.576
However, there is the possibility that those who receive a healthy limb amputation may not flourish afterwards. The data currently available, which supports an increase in flourishing, could be subject to confirmation bias, and as such, portray a deceptively optimistic prognosis for those individuals post-elective amputation, with only those who flourish after the procedure coming forward to report their experiences, leaving those dissatisfied underreported. This possibility, however, is not a compelling enough reason, in itself, to deny the possibility of healthy limb amputations outright. Arguably it means that more research into the efficacy of the procedure is needed; research that aims explicitly to draw out as wide a range of views from those who have undergone a healthy limb amputation as possible, both confident and negative.
Utilising the data that is currently available, a risk to ‘flourishing’ would seem to be of more significant concern for those with BIID who are denied a healthy limb amputation. This is because, despite several alternative therapeutic trials, no method of treatment has proven to have a long-lasting and consistent reductive effect on the desire for healthy limb amputation in cases of BIID, except that of surgery. As summarised by one of Noll and Kasten’s interviewees:
Since about 11 months [post-operation] I’m living permanently with orthotics or wheel-chair. I live my everyday life freed from burnout and depression, meet friends without anxiety, can enjoy trivial things. I’ve got a new view of life, enriching me. In some way the feeling: I arrived.577
For those with BIID, amputation does not present a risk to flourishing but promotes it through the alleviation of restrictive suffering.
574 Berger et al., 'Nonpsychotic, Nonparaphilic Self-Amputation and the Internet'. 575 Johnson, Liew and Aziz-Zadeh, 'Demographics, Learning and Imitation, and Body Schema in Body Integrity Identity Disorder'. 576 Furth and Smith, Apotemnophilia: Information, Questions, Answers, and Recommendations About Self- Demand Amputation. 577 Noll and Kasten, 'Body Integrity Identity Disorder (BIID): How Satisfied Are Successful Wannabes'., p.227. 166
6.7.3 TRANSITION COSTS
The last category which Barnes identifies as a possible source for concern regarding the imparting of impairments on a previously non-impaired, existing individual, relates to the
‘cost’ of transitioning. This cost concerns the harm and distress caused by the need to alter one's desires and goals to incorporate one’s new state of embodiment. In Barnes’ example,
Ben would need to adjust the way he lived his life and how he identifies with himself, from that of a sighted person to one of a blind person. Regarding BIID, there would be a concern with how a person who had previously been ‘fully-mobile’ would adjust to their new way of being, that of having one less biological limb. However, for those people with BIID, this movement from non-impaired to impaired once again differs from Ben’s similar transition.
While Ben may have been able to predict that a possible consequence of the actions of both himself and Amy, playing with the lab’s lasers, would be that he could go blind, this foresight would be, if existent, limited. It is doubtful that Ben has spent considerable time thinking about what it would be like to become blind. As such, the sudden nature of his movement from sighted to blinded would come as a shock. Ben has not been able to plan what his life would be like had he become blind; he has suddenly found himself in such an embodiment. This rapid and unforeseen aspect of becoming blind, compounded with the scale of such a transition, would cause a great deal of pain and suffering, and it would seem sensible to assume the same for those who suddenly found themselves in a post-amputation situation.
However, those with BIID do not become impaired without foresight. Many of those with
BIID spend substantial portions of their lives living with the desire to become impaired due to the early onset of the disorder and its longevity.578 Consequently, these same individuals spend much of their lives considering what it would be like to live post-amputation, with it even being common for those who eventually go onto achieve an amputation to ‘pretend’ to be impaired for years beforehand, behaving as though they have their desired impairment
578 First, 'Desire for Amputation of a Limb: Paraphilia, Psychosis, or a New Type of Identity Disorder'; Blanke et al., 'Preliminary Evidence for a Fronto‐Parietal Dysfunction in Able‐Bodied Participants with a Desire for Limb Amputation'; Kasten and Spithaler, 'Body Integrity Identity Disorder: Personality Profiles and Investigation of Motives'; Blom, Hennekam and Denys, 'Body Integrity Identity Disorder'. 167 through the use of assistive devices.579 Such foresight means that the ‘cost’ of transition, as it relates to the sudden need to alter one’s life plans and goals, is considerably less, as the transition is not sudden but considered, expected, and often planned.
6.8 CONCLUSIONS
To claim that a healthy limb amputation does not necessarily lead to disability evidentially goes against the grain of collective popular wisdom. However, as I have argued in this paper, a critical lynchpin upon which this wisdom rests is a definitional one. Depending on the definition of disability employed by those involved in the discussions around the provision of healthy limb amputation in cases of BIID, the ethical viability of such a procedure can potentially radically differ.
Adherence to a biomedical model of disability and health requires that any ‘unacceptable’ deviation from the statistical norm be understood as an expression of disease, deformity, or disability, and as such, it is emphatically undesirable. Anyone who desires such a body or condition suffers from a pathology which, in turn, leads them to desire the undesirable, and it is this desire which must be eliminated. In cases of BIID, this means the preservation of bodily integrity at the cost of the desired identity. A cost paid via appeals to more palatable treatments.
However, understanding disability in the same manner as those who support the SMD is to differentiate the body and the environment, and locate disability in the gap between the two; or, more accurately, in how the environment unjustly frustrates those of atypical construction. This means that structural, as well as other, differences in the body, termed impairments, move from a state of undesirability to, as Barnes terms them, mere-differences.
Consequently, the question then becomes whether it is ethically acceptable to create an impairment where none existed before?
I have argued that, given the unique and rare circumstances in play in cases of BIID, the imparting of impairments on previously non-impaired individuals could be ethically permissible in the most common expression of the disorder, that being a single lower limb
579 Bayne and Levy, 'Amputees by Choice: Body Integrity Identity Disorder and the Ethics of Amputation'. 168 amputation. I did this by employing one of the examples used by Barnes to discuss a very similar question. However, her analysis centred upon an undesired impairment, which is the antithesis of those suffering from BIID.
Such an argument has a further potential impact regarding the BIID debate, especially regarding the autonomy of those with BIID. Much of the literature concerning the ethical viability of providing healthy limb amputations to those suffering from BIID centres on the principle of autonomy. As demonstrated in the referenced works of Caplan, Müller, and
W.J. Smith, to desire such a radical surgical intervention, to what appears to be an empirically healthy limb, leads down the path of thinking that such an individual must have a psychological disorder; one that compromises their ability to make autonomous decisions regarding a specific aspect of their well-being. Patrone formalises this way of thinking when he draws comparisons between people with BIID, who seek a healthy limb amputation, and individuals suffering from anorexia nervosa to delegitimise the claims of the former by suggesting that BIID can be understood as a non-global, autonomy compromising condition in the same manner as the latter.580
However, if the argument I propose in this paper were accepted, this would help to undermine the claim of those who seek to deny the provision of healthy limb amputations in cases of BIID on autonomy grounds. This undermining is achieved through the interrogation of the idea of desiring the undesirable. To quote Caplan again, “…this is not just about 'do no harm.' It's also about whether (sufferers) are competent to make a decision when they're running around saying, 'Chop my leg off'.”581 However, if those with BIID seek to move from a state of mere-difference to another state of mere-difference for therapeutic reasons, as is the case in BIID, then this automatic questioning of autonomy would be brought into doubt, and the opportunity to address the suffering of those with BIID would be a step closer.
580 Patrone, 'Disfigured Anatomies and Imperfect Analogies: Body Integrity Identity Disorder and the Supposed Right to Self-Demanded Amputation of Healthy Body Parts'. 581 Dotinga, 'Out on a Limb'. 169
CHAPTER VII
ARTICLE THREE:
ELECTIVE AMPUTATION AND NEUROPROSTHETIC LIMBS
PUBLICATION DETAILS:
Gibson, R.B. (2021) ‘Elective Amputation and Neuroprosthetic Limbs’. The New Bioethics, 27(1), pp.30-45. doi: 10.1080/20502877.2020.1869466.
7.1 ABSTRACT
In this paper, I explore the impact that developments in the field of neuroprosthetics will have on the ethical viability of healthy limb amputation, specifically in cases of BIID.
Developments in the field have meant that the prospect of such artificial components matching the utility of their biological counterparts is now a possibility. As such, arguments against the provision of therapeutic, healthy limb amputation, which are grounded in the perceived resultant harm of disability, need to be reconsidered. Drawing on philosophical insights, as well as the field of disability studies and BIID research, I argue that such neuroprosthetics presents a challenge for the fundamental dichotomy between the disabled and non-disabled, including the latter’s perceived superiority. I go onto suggest that healthy limb amputation, for those with BIID, should not be dismissed simply because of the distastefulness of the procedure but rather be evaluated based upon its own merits.
7.2 INTRODUCTION
The ability to research, design, and fabricate assistive technologies, including prosthetic limbs, has improved dramatically since such bodily components, like the 2000-year-old
Capua Leg582 and the 3000-year-old Greville Chester toe,583 were first created. One area of prosthetic technology in which relatively rapid innovation has been made is in the field of neuroprosthetics; “devices that can either act as a substitute for a motor, sensory or cognitive modality that might perhaps have been damaged as a result of an injury or a disease, or they
582 Louise Jacqueline Finch et al., (2012) 'Biomechanical Assessment of Two Artificial Big Toe Restorations from Ancient Egypt and Their Significance to the History of Prosthetics', Journal of Prosthetics and Orthotics, 24(4), pp.181-191. 583 Jacqueline Finch, (2011) 'The Ancient Origins of Prosthetic Medicine', The Lancet, 377(9765), pp.548- 549. 170 can add new modalities.”584 In the past decade, developments in neuroprosthetic limb technology, such as the LUKE Arm585 and agonist-antagonist myoneural interfaces,586 have reshaped the field of study and brought closer the functioning of these artificial bodily components to their biological counterparts. According to DeTOP587 project coordinator
Christian Cipriani, when discussing neuroprostheses, “[r]eality is quickly moving towards science fiction!”588 Developments have meant that the possibility of an artificial limb matching the utility of its biological counterpart is no longer relegated to the fantastical but is instead a distinct possibility.
This potential exposes a challenging ethical quandary regarding the phenomenon of therapeutic, healthy limb amputation, as requested by people suffering from BIID as well as a myriad of other body modification causing conditions. If an artificial limb is so advanced as to negate the adverse mobility aspects of ‘missing’ a limb, then what justification is there to object to therapeutic, healthy limb amputation? That is to say, if one wants to become
‘transabled’ via the amputation of their healthy limb because its presence causes them significant and chronic distress, when they could then replace it with a neuroprosthetic of equivalent functionality, is there an ethical reason to stop them? It is this question that will be addressed, specifically concerning the stance that amputation inexorably leads to disability.
In this paper, I first introduce the phenomenon of individuals wanting to undergo a therapeutic, healthy limb amputation, specifically in cases of BIID. Particular attention will be paid to the arguments against such procedures based upon harm prevention; most
584 Kevin Warwick, (2018) 'Neuroengineering and Neuroprosthetics', Brain and Neuroscience Advances, 2, pp.1-5., p.1. 585 J. A. George et al., (2019) 'Biomimetic Sensory Feedback through Peripheral Nerve Stimulation Improves Dexterous Use of a Bionic Hand', Science Robotics, 4(32), pp.1-11. 586 Tyler R. Clites et al., (2018) 'The Ewing Amputation: The First Human Implementation of the Agonist-Antagonist Myoneural Interface', Plastic and Reconstructive Surgery - Global Open, 6(11), pp.e1997-e1997. 587 Dexterous Transradial Osseointegrated Prosthesis with neural control and sensory feedback. DeTOP is an EU funded research project which addresses the scientific, technological, and clinical issues associated with the recovery of hand function after an amputation. 588 European Commission, (2019) 'Brain-Controlled Prosthetics - from Science Fiction to Reality', European Commission,
I conclude that while there may be other reasons to resist the calls to allow therapeutic, healthy limb amputations in cases of BIID, to deny such procedures to those who subjectively need them based upon the idea that living with a disability is intrinsically harmful is dismissive of the lived experiences of those with BIID post-amputation, as well as the entire field of assistive technologies; a field that has already had a significant impact on the lives of amputees.589
7.3 HEALTHY LIMB AMPUTATIONS AND BODY INTEGRITY IDENTITY
DISORDER
The topic of healthy limb amputation has made periodic appearances in medical, bioethical, and socio-legal literature since the subject came to the attention of Money et al.590 Since then, discussions regarding elective amputation have recently become a broader media talking point.591 The instigation for this transition can be traced to two unilateral, above-the-knee,
589 Paul H. Wise, (2012) 'Emerging Technologies and Their Impact on Disability', The Future of Children, 22(1), pp.169-191. 590 Money, Jobaris and Furth, 'Apotemnophilia: Two Cases of Self‐Demand Amputation as a Paraphilia'. There is a possible case of BIID prior to this concerning an Englishman who paid a French surgeon 250 guineas to amputate his healthy leg in the eighteenth century – see: Pierre Sue, (1785), Anecdotes Historiques: Littéraires Et Critiques, Sur La Médecine, La Chirurgie, & La Pharmacie, 1st edn. (Amsterdam: Chez Le Boucher)., pp.222-223. However, this was not corroborated at the time and, as such, cannot conclusively be confirmed as a case of BIID. 591 Nikki Stockley, (2000), Complete Obsession - Body Dysmorphia (BBC); Taylor, ''My Left Foot Was Not Part of Me''; Neil Levy, (2015) 'Body Integrity Identity Disorder: The Condition Where Sufferers Want to Be Disabled', The Independent, According to Smith, these procedures were justified as each patient had been suffering from BIID, a condition in which an individual feels that a particular aspect of their physical embodiment does not correspond to their self-identified bodily identity. As such, they wish to have that part of their body removed or impaired.593 This mismatch results in significant suffering, which can lead individuals to seek out methods to reduce this embodiment/identity incongruity, either by altering one's identity to match their bodily construction, or more controversially, altering their body to match their identity. The latter includes methods such as damaging a limb so severely that a surgeon must amputate upon clinical presentation,594 self-amputation followed by emergency medical assistance,595 or a black-market amputation.596 While BIID is not codified in the DSM-5,597 it is included in the ICD-11, albeit under the alternative title of Body Integrity Dysphoria.598 Despite this official recognition, however, it is BIID that is the most used term to refer to the desire for healthy limb amputation, resultant from an identity/embodiment mismatch, in both academic literature and media reports. Importantly, BIID should not be confused or conflated with Body Dysmorphic Disorder (BDD), as has been done previously.599 Those with BDD are preoccupied with a perceived or minor physical defect, a defect that they believe to be unbearably grotesque. This disorder> accessed 20th August 2019; Jessie Schiewe, (2019) 'The Man Who Cured Himself of BIID', OK Whatever, BIID, the issue is not one aesthetics but identity and embodiment. Indeed, the dissimilarities between the two conditions mean that they should be considered separately. Failure to do so risks confusing the issues surrounding both conditions.603 The risk of acute harm associated with amputations, be they elective or otherwise, vary greatly depending on several factors including, but not limited to, the individual’s medical history, the environment in which the amputation is taking place, the level of post-operative care they receive, as well as the skill of the surgical team carrying out the operation. Even in ideal situations, surgeons are often reluctant to amputate diseased limbs due to the potential risks. From an ethical point of view, to expose individuals to such potentially fatal consequences, when not medically necessary, is generally considered impermissible as it dramatically increases the risk of harm an individual may experience. As argued by Müller604 and Ryan,605 in cases of BIID, exposure to such significant risks is a convincing reason why such operations should be prohibited. Counterarguments in the form of an identification of a duality of validity when it comes to elective v. non-elective surgical interventions have been presented by Jordan,606 and Bayne and Levy.607 However, it is the 600 Chan, Jones and Heywood, 'Body Dysmorphia, Self-Mutilation and the Reconstructive Surgeon'. 601 American Psychiatric Association, Diagnostic and Statistical Manual of Mental Disorders: DSM-5., pp.242-251. 602 Ryan, Shaw and Harris, 'Body Integrity Identity Disorder: Response to Patrone'; First and Fisher, 'Body Integrity Identity Disorder: The Persistent Desire to Acquire a Physical Disability'. 603 Christopher James Ryan and Tarra Shaw, (2011) 'BIID Is Not BDD - Comment on Kwok-Kwan Chan et al', Journal of Plastic, Reconstructive & Aesthetic Surgery, 64(1), pp.8-9. 604 Müller, 'Body Integrity Identity Disorder (BIID)—Is the Amputation of Healthy Limbs Ethically Justified?'. 605 Ryan, 'Out on a Limb: The Ethical Management of Body Integrity Identity Disorder'. 606 Jordan, 'The Rhetorical Limits of the “Plastic Body”'. 607 Bayne and Levy, 'Amputees by Choice: Body Integrity Identity Disorder and the Ethics of Amputation'. 174 chronic harms of elective amputation, and the impact neuroprosthetic developments will have on these supposed harms, which I am principally concerned with in this paper.608 According to Smith, the operations he carried out were justifiable not only as a preventative measure609 but also because the adverse effects of being disabled are outweighed by the therapeutic benefits of being able to live according to one’s ‘core identity’, that being free from psychological suffering.610 This account of post-amputation freedom from suffering has been further corroborated not only in regards to the two Smith operations,611 but also concerning other individuals who received BIID motivated amputations.612 According to Smith, it is better to be free from mental suffering and anatomically atypical than the inverse. However, the efficacy of such elective amputations is disputed. Arguments against their provision have been advanced by academics,613 parliamentarians,614 and clinicians.615 One focus of such arguments concerns the claim that by amputating a healthy limb, a surgeon causes that person irreparable harm by making them disabled when before surgery, they were non-disabled. As causing harm to patients is considered a breach of the principle of nonmaleficence, they argue that healthy limb amputations should not be offered as it causes 608 For more on the distinction between the acute and chronic risks associated with surgery, specifically concerning BIID, see: Chapter Six. 609 BBC News, 'Surgeon Defends Amputations'. 610 Smith, 'Body Integrity Identity Disorder: A Problem of Perception?'., p.71. 611 BBC News, ''No Regrets' for Healthy Limb Amputee'; Dyer, 'Surgeon Amputated Healthy Legs'; Stockley, Complete Obsession - Body Dysmorphia; Stevens, 'Interrogating Transability: A Catalyst to View Disability as Body Art'. 612 First, 'Desire for Amputation of a Limb: Paraphilia, Psychosis, or a New Type of Identity Disorder'; Sorene, Heras-Palou and Burke, 'Self-Amputation of a Healthy Hand: A Case of Body Integrity Identity Disorder'; Noll and Kasten, 'Body Integrity Identity Disorder (BIID): How Satisfied Are Successful Wannabes'; Yates, 'Talking to a Guy Who Found Peace through Self-Amputation'. 613 Müller, 'BIID – under Which Circumstances Would Be Amputations of Healthy Limbs Ethically Justified'; Bruno, 'Devotees, Pretenders and Wannabes: Two Cases of Factitious Disability Disorder'; Patrone, 'Disfigured Anatomies and Imperfect Analogies: Body Integrity Identity Disorder and the Supposed Right to Self-Demanded Amputation of Healthy Body Parts'. 614 BBC News, 'Surgeon Defends Amputations'. 615 Beckford-Ball, 'The Amputation of Healthy Limbs Is Not an Option'. 175 disability, and disability is intrinsically harmful.616 The idea that disability is a direct and unavoidable consequence of amputation is, however, problematic. Even if one were to believe that disability is a harm per se – and there is limited empirical and anecdotal evidence related to cases of BIID to suggest otherwise617 – this is different from assuming that amputation leads to disability ipso facto. The latter rests upon the supposition that there is no distinction between disability and impairment. This conflation conforms to biomedical models of health and disability – such as Boorse’s BST and, to a degree, Wakefield’s harmful-dysfunction analysis – according to which to lose one’s leg is to deviate from the ‘correct’ number of limbs.618 Consequentially, the harmful effects associated with the post-amputation experience are innate to this biological nonconformity; people suffer from having a missing limb because their limb is missing. Therefore, healthy limb amputation should not be provided as a treatment option for those with BIID as it is intrinsically harmful. A similar conclusion can be drawn if one were to examine the topic of healthy limb amputation via a concept of the ‘internal morality of medicine’. The practice’s inherent purpose, according to Pellegrino, is to secure the natural good of healing and promote the health of the patient. As he writes, “[t]he well being of the patient is the good end of medicine and of the physician’s art and action.”619 This approach, one which takes inspiration from Aristotle’s teleology, demands that the goal of medicine overrides the autonomy of the individual. Again, as Pellegrino writes: 616 Smith, 'Should Doctors Amputate Healthy Limbs?'; Müller, 'Body Integrity Identity Disorder (BIID)—Is the Amputation of Healthy Limbs Ethically Justified?'. 617 Berger et al., 'Nonpsychotic, Nonparaphilic Self-Amputation and the Internet'; First, 'Desire for Amputation of a Limb: Paraphilia, Psychosis, or a New Type of Identity Disorder'; Noll and Kasten, 'Body Integrity Identity Disorder (BIID): How Satisfied Are Successful Wannabes'; Yates, 'Talking to a Guy Who Found Peace through Self-Amputation'. 618 Boorse, 'Health as a Theoretical Concept'; Jerome C. Wakefield, (1992) 'Disorder as Harmful Dysfunction: A Conceptual Critique of DSM-III-R's Definition of Mental Disorder', Psychological Review, 99(2), pp.232-247; Jerome C. Wakefield, (1992) 'The Concept of Mental Disorder. On the Boundary between Biological Facts and Social Values', American Psychologist, 47(3), pp.373-388. 619 Edmund D. Pellegrino, (2001) 'The Internal Morality of Clinical Medicine: A Paradigm for the Ethics of the Helping and Healing Professions', Journal of Medicine and Philosophy, 26(6), pp.559-579., p.566. 176 What the patient describes as good for himself – cloning, let us say, or self- mutilation, human embryo research, euthanasia – may violate the good for humans or the spiritual good. The good perceived as good by the patient is not to be a moral law in itself. It too must meet the tests of moral defensibility, established by a more fundamental source of the good than the patient's preferences. To give supremacy to the patient's definition of his own good over the other levels of good is to absolutize the patient's autonomy and to violate the autonomy of the physician. … The existence of complexities cannot be used to justify a utilitarian, legalistic, or libertarian definition of the ends of medicine or the physician’s or patient’s good.620 If one concedes to the existence of such an internal morality of medicine, then there would be a strong inclination to refuse the permissibility of healthy limb amputation in cases of BIID as it would, in all likelihood, contravene such an internalised and static theory as being impaired is not compatible with the broadly constructed human good. The existence of such an internal morality of medicine is, however, hotly disputed.621 Nevertheless, according to alternative models, impairment and disability are distinct phenomena. The former concerns ‘traditional’ disability (e.g. a missing limb, loss of sight, cognitive impairment), while the latter concerns the unjust external limitations placed on an individual resulting from their impairment (e.g. a building’s construction preventing those with mobility impairments from gaining access but not those who are non-disabled). Consequentially, an impairment is not a negative quality; it is a form of biological variation or a mere-difference.622 The negativity associated with such variations is a product of how the world one lives in unjustly disadvantages them compared to their statistically conforming counterparts. Dependent on one’s environment and milieu, the two can exist independently; one can be disabled without having an impairment, and vice versa.623 620 Ibid., p.572, empahsis added. 621 Xavier Symons, (2019) 'Pellegrino, Macintyre, and the Internal Morality of Clinical Medicine', Theoretical Medicine and Bioethics, 40(3), pp.243-251. 622 Elizabeth Barnes, (2016), The Minority Body: A Theory of Disability, 1st edn. (Oxford: Oxford University Press). 623 For an excellent illustration of how this disentanglement of the two can be realised, albeit in a work of fiction, see The Country of the Blind, in: Herbert G. Wells, (2007), The Country of the Blind and Other Short Stories, 1st edn. (London: Penguin). 177 This argument for the separation of disability and impairment developed out of the normative school of thought regarding health and pathology, which posits that one cannot make claims about what a body should be like from observations about what a body typically looks like; in other words, statistical commonality cannot meaningfully determine normative bodily judgements.624 While the statistically informed model of health has been critiqued repeatedly,625 it was arguably best done in Canguilhem’s The Normal and the Pathological.626 This work has received renewed interest due to its relevance to the field of disability studies.627 Here, Canguilhem launches a blistering attack on the empirical understanding of health and disease which conflates anomaly with pathology. For Canguilhem: There is no objective pathology. Structures or behaviours can be objectively described but they cannot be called ‘pathological’ on the strength of some purely objective criterion. Objectively, only varieties or differences can be defined with positive or negative vital values.628 More recently, the disentanglement of disability and impairment, specifically concerning BIID, was explored in my 2020 paper.629 In that paper, I argued that when discussing the ethical viability of BIID-driven, healthy limb amputation, the questions of whether it is ethical to give someone a disability must be considered separately from the question of whether it is ethical to give that same person an impairment. In Chapter Six, I proposed that while giving someone a disability is indefensible according to both biomedical and social models of disability, this is different from giving someone an impairment; something which 624 Lennard J. Davis, (2013) 'Introduction: Disability, Normality, and Power' in Lennard J. Davis (ed) The Disability Studies Reader, 5th edn, (London: Taylor & Francis). 625 Reznek, The Nature of Disease; Foucault, The Birth of the Clinic: An Archaeology of Medical Perception; Amundson, 'Disability, Handicap and the Environment'; Amundson, 'Against Normal Function'; Nordenfelt, On the Nature of Health: An Action-Theoretic Approach. 626 Canguilhem, The Normal and the Pathological. 627 Tiles, 'The Normal and Pathological: The Concept of a Scientific Medicine'; Snyder and Mitchell, 'Re-Engaging the Body: Disability Studies and the Resistance to Embodiment'; García, 'Georges Canguilhem Y La Biopolítica De Las Discapacidades/Georges Canguilhem and the Bipolitics of Disabilities'; Gotkin, 'The Norm___ and the Pathological'. 628 Canguilhem, The Normal and the Pathological., p.226. 629 Richard B. Gibson, (2020) 'Elective Impairment Minus Elective Disability: The Social Model of Disability and Body Integrity Identity Disorder', Journal of Bioethical Inquiry, 17(1), pp.145-155. 178 can potentially be justified as such impairments do not act as barriers, but as forms of liberation and positive becoming, for those with BIID. My use of the SMD presents a potential weakness with this proposition in that the model itself has come under considerable criticism for its “neglect of impairment, the dichotomy between impairment and disability, and the faith placed in barrier removal.”630 While such criticisms are valid, and the theory does indeed have its issues, the model still has considerable value as a political and conceptual tool.631 It can, and has been, used as an instrument for shifting perceptions of disability and catalysing discourse regarding how non-typical forms and neurodivergent people should be accommodated for, and crucially, why. Regarding the harm caused by the practice of healthy limb amputations in cases of BIID, in this paper, I assume, following my work in Chapter Six, that to undergo such a procedure does not necessarily mean that one will inevitably become more disabled. To claim that would require appealing to the pre- and post-amputation lived experience of those with BIID to demonstrate that those individuals experience an increased level of disability as a result of their limb removal; something which cannot be done with the available data. 7.3.1 THE USE OF PROSTHETICS POST-AMPUTATION IN CASES OF BIID It is essential to consider the post-amputation experience of those with BIID, and specifically, their relationship with prosthetic devices as such relationships can fundamentally alter the post-amputation lived experience. Once again, counterintuitively, those individuals with BIID who have been successful in obtaining an amputation do use artificial replacement limbs. In Stone et al.,632 17 of the 19 study participants reported using prosthetic devices regularly. Similarly, Sorene et al.’s case study, concerning an individual with BIID who amputated his left hand, reported that after presenting to the hospital for emergency treatment: 630 Shakespeare, Disability Rights and Wrongs., p.2. 631 For a defence of the Social Model of Disability, see: Furner, 'Recovering the Social Interpretation of Disability'. 632 Stone et al., 'Mental Rotation of Feet in Individuals with Body Integrity Identity Disorder, Lower- Limb Amputees, and Normally-Limbed Controls'. 179 Surgery was carried out with an uneventful postoperative period and without complications. The patient was satisfied with the stump and looking forward to having his prosthesis fitted when he was discharged back to his local hospital by us for psychiatric care and prosthetic rehabilitation.633 Indeed, accounts detailing the use of, or the intention to use, prosthetic devices by those with BIID post-amputation were found in multiple other studies,634 as well as reflected by those featured in both the BBC documentary Complete Obsession635 and the feature-length documentary Whole.636 Such use may lead one to ask why an individual would subject themselves to the risks of having a limb amputated to then use a prosthetic replacement. This usage derives from the central motivation for why those with BIID wish to undergo such procedures. Individuals with BIID do not wish to become disabled per se; they wish to bridge the gap between their self-perceived body-image and their bodily construction. They have a disorder for which, arguably, the only treatment option is to surgically alter the body.637 It is incidental that this is done via the altering of the body into an impaired form that typically results in disability. As such, it is suggested that those with BIID can be understood as wanting to obtain an impairment without also necessarily wanting to take on the commonly associated disability. Not all those with BIID want a more challenging life consisting of the complexities of navigating a physical, social, and economic world built around the statistically typical body at the unjust expense of those with an atypical bodily construction. What they want is to no longer experience chronic suffering as a consequence of feeling out-of-line with their bodies. Hence why many of those who have been able to secure a healthy limb amputation have 633 Sorene, Heras-Palou and Burke, 'Self-Amputation of a Healthy Hand: A Case of Body Integrity Identity Disorder'., p.593. 634 Braam and de Boer-Kreeft, 'Case Report - the Ultimate Relief; Resolution of the Apotemnophilia Syndrome'; Johnson, Liew and Aziz-Zadeh, 'Demographics, Learning and Imitation, and Body Schema in Body Integrity Identity Disorder'; Noll and Kasten, 'Body Integrity Identity Disorder (BIID): How Satisfied Are Successful Wannabes'. 635 Stockley, Complete Obsession - Body Dysmorphia. 636 Gilbert, Whole. 637 Bayne and Levy, 'Amputees by Choice: Body Integrity Identity Disorder and the Ethics of Amputation'. 180 then gone on to make use of the prosthetic devices available to them; their problem is not one of utility but identity. That being said, it is hard to ignore the fact that those with impairments do often experience significant barriers preventing them from full engagement in many of societies valued activities such as employment,638 as well as the indicated comorbidity that comes with having an impairment.639 However, these barriers are not absolute. With appropriate resource allocation and societal adjustment, significant obstacles which disable those people with impairments can be reduced or potentially eliminated. One such resource that is of particular interest to me in this paper is that of prosthetic limbs, and it is to this subject that I now turn. 7.4 NEUROPROSTHETICS: WHERE ARE WE NOW AND WHERE ARE WE GOING? The practice of creating artificial replacements for lost limbs has been a millennia-spanning undertaking. From the aforementioned Greville Chester toe,640 and the battle-hardened iron hand of Roman General Marcus Sergius,641 through to the many devices produced in response to the Napoleonic wars642 and World War One,643 up to contemporary 3D printed limbs produced by initiatives such as e-NABLE644 and Open Bionics,645 prosthetic technologies have been working towards a unifying ideal; biological functionality. The success of a limb has been measured using a metric based upon its biological counterpart.646 638 Andrew Powell, (2020) Briefing Paper: People with Disabilities in Employment. 639 R. Turner and M. Beiser, (1990) 'Major Depression and Depressive Symptomatology among the Physically Disabled: Assessing the Role of Chronic Stress', Journal of Nervous and Mental Disease, 178(6), pp.343-350; Sally-Ann Cooper et al., (2015) 'Multiple Physical and Mental Health Comorbidity in Adults with Intellectual Disabilities: Population-Based Cross-Sectional Analysis', BMC Family Practice, 16, pp.110. 640 Finch, 'The Ancient Origins of Prosthetic Medicine'. 641 Brian G. Andrews, (1989) 'Amputation Surgery', Current Orthopaedics, 3(1), pp.29-32. 642 Kirkup, A History of Limb Amputation. 643 Boaz Neumann, (2010) 'Being Prosthetic in the First World War and Weimar Germany', Body & Society, 16(3), pp.93-126. 644 Enabling the Future, (2019) 'E-Nable', Enabling the Future, A prosthetic leg would be considered a success if it provided a utility level matching with that of a biological leg without additional cognitive burden. Essentially, the prosthetic is successful if it can operate in silent harmony with the rest of the body. If a limb fails in this, it does not mean it is an outright failure, just that there is room for improvement. What prosthetic devices have been unable to do, that their biological counterparts could, is provide sensory feedback beyond the rudimentary touch and pressure information from the interface between the biological stump and artificial socket. Traditional prosthetic limbs can provide someone with the mechanical function required for mobility, but without the provision of sensory feedback to the user in the form of a sense of touch, and importantly a sense of proprioception, such a limb would lack the fully embodied experience available to those with biological limbs.647 As noted by biophysicist Hugh Herr, “people with amputated limbs cannot feel the position, speed, and torque of their prosthetic joints without looking at them, making it difficult to control their movement.”648 This difficulty means that for those who make use of traditional prosthetic limbs, ones that attach to a stump via a suspension mechanism, there is always a sense of separation and disembodiment from the limb.649 This disunion results in an otherness of the limb, fundamentally constraining its utility. Nevertheless, developments in the field of neuroprosthetics have begun to challenge this status quo and demonstrate the potential for artificial limbs that provide not only mobility but also a two-way avenue of sense and motor information.650 Such technologies demonstrate the potential for an individual to receive sensory information generated by an 647 Edoardo D’Anna et al., (2019) 'A Closed-Loop Hand Prosthesis with Simultaneous Intraneural Tactile and Position Feedback', Science Robotics, 4(27), pp.eaau8892. 648 Jennifer Abbasi, (2018) 'Prosthetic Limbs Given Proprioception', JAMA, 320(6), pp.539-539., p.539. For a fascinating contrast to this see the case of Iain Waterman who, at the age of 19, lost his sense of proprioception and, consequentially, had to learn how to live in his biological body without having a sense of embodiment – see: Jonathan Cole, (2016), Losing Touch: A Man without His Body, 1st edn. (Oxford: Oxford University Press). 649 Lee D. Walsh et al., (2011) 'Proprioceptive Signals Contribute to the Sense of Body Ownership', The Journal of Physiology, 589(12), pp.3009-3021. 650 Tyler R. Clites et al., (2018) 'Proprioception from a Neurally Controlled Lower-Extremity Prosthesis', Science Translational Medicine, 10(443), pp.eaap8373; Caroline Dietrich et al., (2018) 'Leg Prosthesis with Somatosensory Feedback Reduces Phantom Limb Pain and Increases Functionality', Frontiers in Neurology, 9(270), pp.1-10; Francesco Maria Petrini et al., (2019) 'Enhancing Functional Abilities and Cognitive Integration of the Lower Limb Prosthesis', Science Translational Medicine, 11(512), pp.eaav8939. 182 artificial limb directly into either their peripheral or central nervous system while also being able to send instructions to the motor systems within the limb directly, much in the same way as one would with a biological prosthesis. As Adewole et al. notes, this “essentially recreates the control-feedback loop found in an intact limb, where the nervous system propagates information via electrical signals, or action potentials, throughout the body.”651 As such, a phenomenologically embodied artificial limb is now a realistic possibility. 7.5 ELECTIVE AMPUTATION AND NEUROPROSTHETIC LIMBS Returning to the central question of this chapter, if one wants to amputate their healthy limb because its presence causes them distress and replace it with a neuroprosthetic of equivalent functionality, is an appeal to the harm of disability a valid preventative reason? As indicated, one of the central arguments employed by opponents of healthy limb amputation in cases of BIID concerns the point that after one receives such an amputation, they are then placed in a permanent state of disability, which is exceptionally harmful. As medical procedures and those that provide them should not aim to produce net increases in harm – per Boorse, Wakefield, and Pellegrino – this means that such elective amputations are inherently antithetical to medical practice. Those who tentatively argue in favour of such procedures do so by appealing to the relief from mental suffering that they provide. This is done via the claim that while such procedures may result in a physical disability, this is an acceptable price to pay for the relief from psychological suffering and its disabling effects. This debate then hinges on the value afforded to disability. Following the work I laid out earlier in this thesis, as well as that of Reynolds,652 and Barnes,653 I do not accept that disability is an intrinsic feature of amputation; disability and impairment are different, although traditionally correlating, phenomena. A healthy limb amputation would lead to someone having an impairment, but this is not to say that it would cause them disability. The latter would be dependent on the interaction between the built environment and the social milieu in which that person exists. If these cause an amputee no additional hardships or place in their way no discriminative barriers, then they would not experience any 651 Adewole et al., 'The Evolution of Neuroprosthetic Interfaces'., p.2. 652 Reynolds, 'Toward a Critical Theory of Harm: Ableism, Normativity, and Transability (BIID)'. 653 Barnes, The Minority Body: A Theory of Disability. 183 disabling effects of their atypical bodily construction. They would have a mere-difference from the majority of other people, not a bad-difference. It is this facilitating of a transition from a disabling-difference to a mere-difference that neuroprosthetic technologies may eventually provide, specifically concerning physical mobility. If the ability of a neuroprosthetic limb to relay sensory information back to its user via the nervous system is equivalent to that of a biological limb, and if that same limb can respond to commands given to it, by its user, in a manner that requires no additional cognitive burden, then it would seem reasonable to question whether that individual has a functional disability. If they embody their prosthetic limb in a manner that is comparable to how individuals embody their biological prosthesis, then in what manner can they be said to possess a constrictive disability? To claim that a person is still disabled, despite them not experiencing any disabling effects of being impaired, would seem to suggest that such an evaluation is born not from a grounding in the experience of the impaired person, but rather, as a normative and at its worst prejudicial judgement regarding what the correct bodily form is according to a phenomenologically detached metric or theory. The unstable foundation of the disability/non-disability dichotomy has already proven problematic in situations where the established presumption is that of impairment’s equivalency with disability and ‘wholeness’ with health. One example of this inter- paradigmatic conflict comes from scenarios in which those with impairments are perceived to be able to perform to a higher degree than those without, such as in cases where impaired athletes have wanted to compete alongside their non-impaired peers, and the emergence of so-called ‘techno-doping devices’.654 In such situations, athletes seeking to enter non- disability dedicated competitions have faced significant challenges in doing so based on the judgement that their prosthetic devices, regardless of therapeutic purpose, give them an unfair advantage over their non-disabled peers.655 However, this runs counter to the broader 654 Gregor Wolbring, (2012) 'Paralympians Outperforming Olympians: An Increasing Challenge for Olympism and the Paralympic and Olympic Movement', Sport, Ethics and Philosophy, 6(2), pp.251-266; Larry Greenemeier, (2016) 'Blade Runners: Do High-Tech Prostheses Give Runners an Unfair Advantage?', Scientific America, This example is, of course, specific, and an extrapolation to the broader complexities of impairment, disability, and society cannot be directly drawn. However, what it provides is an illustration of how the superiority of the ‘intact’ body can be challenged, and even threatened, by the non-conforming bodily form. In particular, it demonstrates the impact that advanced prosthetic devices have on such forms and categorisations. Techno-doping devices disrupt the established ableist sporting paradigm due to their perceived ability to provide ‘unfair’ assistance in increasing the level of sporting performance according to a specific proximal metric; that being however performance in that specific sport is judged. Such specialised prosthetic devices do not challenge the broader societal structure concerning impairment as they do not function to a high enough degree in this wider context or against the broader ideal for prosthetic limbs, which, as mentioned earlier, is biological functionality; a functionality that requires more than mere sporting prowess, it requires embodiment. Advanced neuroprostheses illustrate the possibility for embodied prosthetic limbs that challenge the ableist-driven superiority of the ‘complete’ body in a broader societal context. This disputation is in the same manner that techno-doping devices operate in sport. The development of these devices means that the contemporarily non-impaired body may lose its status as the singular paragon of non-disability and the ideal method of mobility. Hints of this challenge have already been observed regarding the implementation of another frontier of prosthetic limb technology, that being the direct attachment of prosthetic devices to an individual’s skeleton, known as osseointegration. In their qualitative study, Lundberg et al. remarked that: accessed 10th January 2020; BBC Sport, (2016) 'Paralympian Markus Rehm Will Not Compete in Rio Long Jump', BBC Sport, [L]iving with the OI [osseointergrated]-prosthesis had a profound existential impact on their [study participants] lives, in the sense that the new possibilities opened up by the prosthesis began a process of self- development. This process is described in terms of a gradual change in their identity from considering oneself as being disabled to having an identity as a healthy person.656 What does this mean for those with BIID seeking a healthy limb amputation? If the ‘complete’ body no longer holds its position as the sole ideal for non-disability, and other bodily forms can make a similar claim to that title, albeit through the utilisation of technology, then it would seem to follow that one can transition from a wholly biological embodiment to one which incorporates a degree of artificiality without experiencing mechanical disability when disability is understood according to a social model.657 This levelling between the biological and technological prostheses is the potential that neuroprosthetics provides via their ability to grant not only functional and mechanical assistance but also embodiment. This embodiment can enable the user of such an artificial limb to operate it without additional cognitive burden as the neuroprosthetic would respond in the same manner as a biological limb as a result of its sensory/stimulation closed- looped nature. If neuroprosthetic technologies were developed to the point at which they could provide a seamless transition from a biological limb to a prosthetic one, and these limbs were available to those who required them, then an appeal to the harms of disability as a means of preventing the allowance of elective amputation in cases of BIID would lose its persuasive power. In short, one cannot claim that someone is harmed by being disabled if they do not experience any disability. To do so exposes prejudice against that form and the assumed superiority of another. 656 Mari Lundberg, Kerstin Hagberg and Jennifer Bullington, (2011) 'My Prosthesis as a Part of Me: A Qualitative Analysis of Living with an Osseointegrated Prosthetic Limb', Prosthetics and Orthotics International, 35(2), pp.207-214., p.209, emphasis added. 657 There still remains the question of whether it is even possible to understand concepts such as health, disease, pathology, and disability independent of external social influences or whether such societal pressures themselves define what these terms mean and how they are applied to body. 186 7.6 CONCLUSIONS In this paper, I have explored the impact that neuroprosthetic technologies will have on the ethical viability of healthy limb amputation in cases of BIID. It provided a brief introduction to the phenomenon of individuals wanting to undergo an elective amputation in cases of BIID and outlined one of the critical arguments against the provision of such surgeries; that being an appeal to the resultant harm of disability. It also provided an account of the use of prosthetic devices after BIID-driven elective amputations. From this point, it then explored the field of neuroprosthetics. It did this to illustrate the potential of such sensory granting artificial bodily components. Finally, it presented the argument that once such neuroprosthetics can function at a level equivalent to that of their biological counterparts, the arguments against providing healthy limb amputation in cases of BIID that rest upon the supposed harms of disability generation will begin to lose their persuasive power. This is resultant from the ability of such devices to negate the disabling effects of having an impairment. This conclusion is specific as it only concerns the impact on functional disability that such a neuroprosthetic limb could have. The effect that such advanced artificial limbs could have on other disability causing factors, such as economic marginalisation and social prejudices, would need further research. Additionally, research would need to be conducted exploring the reasons why elective amputations elicit such a strong reaction, and whether these reactions carry with them any value as a means of influencing normative decision-making vis-à-vis an argument via ‘the wisdom of repugnance’. However, when discussing the ability of such limbs to mitigate the life-limiting mobility qualities of living with an impairment, I hold that the requirement for further research on this broader socio-economic context does not weaken the conclusion drawn here. Another point that, while being beyond the scope of this chapter, needs acknowledgement concerns questions around social justice and resource allocation. Why should such prosthetic devices, be they advanced neuroprosthetics or more rudimentary models, be provided to those individuals who have chosen to have an impairment? Given the high demand for prosthetic devices, should they not be reserved for those people who did not choose such impairments but have had them forced upon them through happenstance? I 187 would cautiously argue that the claims of those with BIID post-operation are as valid as others with prosthetic needs, but such an argument cannot be fully proposed here. The impact that neuroprosthetic limbs will have on the conceptualisation of the boundary between the biological and the artificial is likely to be vast. As argued, one such way in which that impact will be felt is in the blurring, and possible elimination, of the boundary between the disabled and healthy bodily forms. Once this occurs, arguments employed by those seeking to prevent people from becoming ‘transabled’ will need to move away from claims of the harms of disability; claims that, even now, seem to stand on shaky foundations. 188 CHAPTER VIII ARTICLE FOUR: NO HARM, NO FOUL? BODY INTEGRITY IDENTITY DISORDER AND THE METAPHYSICS OF GRIEVOUS BODILY HARM PUBLICATION DETAILS: Gibson, R.B. (2020) ‘No Harm, No Foul? Body Integrity Identity Disorder and the Metaphysics of Grievous Bodily Harm’. Medical Law International, 20(1), pp.73-96. doi: 10.1177/0968533220934529. 8.1 ABSTRACT Sufferers of BIID experience a severe, non-delusional mismatch between their physical body and their internalised bodily image. For some, healthy limb amputation is the only alleviation for their significant suffering. Those who achieved an amputation, either self- inflicted or via surgery, often describe the procedure as resulting in relief. However, in England, surgeons who provide ‘elective amputations’ could face prosecution for causing GBH under section 18 of the OAPA 1861. Whether such a therapeutic intervention should be classified as GBH depends on the presence of harm, as, without harm, it is hard to argue that GBH has occurred. However, there is no agreed-upon definition of what constitutes harm. Such a definitional absence then begs the question, what is harm? It is this question which this article addresses, using the provision of healthy limb amputation in cases of BIID as an example. Drawing on metaphysics, this article will seek to clarify three separate contemporary models of harm: the counter-temporal, the counter-factual, and the non- comparative. Each model will be applied to the scenario of a surgeon carrying out a BIID- induced, therapeutic, healthy limb amputation, and in each, how harm may, or may not, be understood to have been caused will be explored. It concludes that an unexamined conception of harm is ill-equipped for employment in suspected cases of GBH when it is unclear whether harm has been caused and that a better-informed understanding of harm is required in cases where there is potential disagreement, be that in instances of BIID or a myriad of other borderline scenarios. 189 8.1 INTRODUCTION John Stuart Mill wrote that the only purpose for which the power of a civilised state could be exercised over its citizens was to prevent them from causing harm to others.658 If a person wanted to harm themselves, the state should not intervene as ‘[o]ver himself, over his own body and mind, the individual is sovereign’.659 This justification for minimal state intervention was termed the ‘harm principle’ and is one of the grounding doctrines of liberal political and legal theory.660 Given this theoretical pedigree, and because the law is one of the fundamental forms by which the state exercises power over its citizens, it is unsurprising that the concept of harm makes repeated appearances in various legal traditions, including in English law.661 However, despite its prevalence, no conclusive definition of ‘harm’ exists, nor a standardised legal interpretation of the term. This definitional and interpretational discretion gives offences that have harm as a critical component of their actus reus an indeterminate quality; what one may consider harm, another may not.662 This fluctuating trait does not present an issue in circumstances where the presence of harm is undisputed. However, when contention exists over whether an individual harmed another, this lack of a definitive conceptualisation can prove to be confusing and, for those who fall foul of such ambiguous phrasing, highly problematic. In this article, I examine one such instance where the question of what constitutes harm is central, that being the legal status of the provision of healthy limb amputation in cases of BIID.663 Specifically, in this article, I explore whether a surgeon providing such a therapeutic 658 Mill, On Liberty. 659 Ibid., p.18. 660 Feinberg, The Moral Limits of the Criminal Law: Harm to Others., pp.14-16. 661 Victor Tadros, (2017), Wrongs and Crimes, 1st edn. (Oxford: Oxford University Press). 662 For an interesting, albeit sobering, account of the problem of the indeterminacy of harm in English law, see: Giles Birchley, (2016) 'Harm Is All You Need? Best Interests and Disputes About Parental Decision-Making', Journal of Medical Ethics, 42(2), pp.111-115. 663 The term BIID was coined in 2005 by Michael First in an effort to both highlight the phenomenological symptoms of being in the wrong body, as experienced by those with the disorder, as well as invoke a comparison to gender identity disorder. Prior to 2005, and in some select contemporary publications, the condition goes by several other labels including Amputee Identity Disorder, Klingsor syndrome, Xenomelia and Apotemnophilia. This article will use the term BIID as it is the most widely applied label by clinicians, researchers and those with the condition. 190 intervention, in an incident of BIID, has caused harm to that individual, and consequentially, whether they have committed the offence of causing GBH with intent under section 18 of the OAPA 1861. I present the argument that it may not be appropriate to charge a surgeon, who carries out a therapeutic, healthy limb amputation, with causing GBH with intent, not because of an entitlement to a medical exception from this charge as afforded under R v. Brown,664 as has been the approach explored in the literature so far,665 but rather because no harm was caused in the first place. While, in this article, I do not seek to provide an absolute definition of harm, nor to advocate for one account over another, I do challenge the common-sense interpretation of harm commonly employed in English law. I argue that a more considered and reflective understanding of harm is needed. This is to not only provide clarity for those surgeons faced with an individual afflicted with BIID but also in a multitude of other borderline harm infliction cases, including elective sterilisation,666 ‘radical’ body modification,667 and even male circumcision.668 Firstly, I will provide an account of the current jurisprudential attitude towards harm as it concerns the body. I present critical examples from the case law in which the concept of harm has been overlooked or assumed to be axiomatic, specifically in contrast to the other conceptual components of GBH; those being ‘grievous’ and ‘bodily’. Next, I will give a brief account of the potential and actual problems caused by the law not having an explicit understanding of harm. Following this, a brief introduction to BIID will be given. This introduction will draw attention to the two cases of elective amputation carried out by the surgeon, Robert Smith. The examination will highlight the uncertainty concerning whether a surgeon, carrying out a BIID-driven therapeutic, healthy limb amputation causes harm, and thus whether they satisfy the actus reus and mens rea requirements for the commission of an 664 R v. Brown [1993] 1 AC 212. 665 Smith, 'Body Integrity Identity Disorder: A Problem of Perception?'; Johnston and Elliott, 'Healthy Limb Amputation: Ethical and Legal Aspects'; Annemarie Bridy, (2004) 'Confounding Extremities: Surgery at the Medico-Ethical Limits of Self-Modification', The Journal of Law, Medicine & Ethics, 32(1), pp.148-158. 666 Faculty of Sexual & Reproductive Healthcare (FSRH), (2014) Male and Female Sterilisation. 667 R v. BM [2018] EWCA Crim 560. 668 Re B and G (Children) (No 2) [2015] EWFC 3. 191 offence under the OAPA 1861.669 Finally, in this article, I employ three metaphysical accounts of harm as interpretational devices clarifying whether those individuals, who undergo a healthy limb amputation, are harmed in a manner deserving of consideration according to section 18 of the OAPA 1861. Before moving onto the main body of the argument, a quick point of framing must be made. The actus reus of an offence under section 18 of the OAPA 1861 can be fulfilled via two avenues: either by an individual intentionally causing GBH to the victim or by an individual intentionally wounding a victim. This article will examine the former of these avenues. The reasoning for this being that wounding, as a legal concept, has a clear definition, that being a break in the continuity of the skin.670 This precise legal definition gives the charge of causing GBH via wounding a clear applicational boundary. If the continuity of the skin remains intact, regardless of the severity of internal wounds, then a charge of GBH via wounding is not applicable.671 If it were not for this explicit definition, the term wounding could be interpreted in a variety of different ways and according to a variety of different conceptualisations. As such, it would be subject to the same interpretational issues which the concept of harm is. Thus, this article can be seen as a first step towards giving the concept of harm, as employed in GBH, the same clarity which has been afforded to the concept of wounding and, as will be illustrated in the next section, the other conceptual components of GBH. 8.2 CURRENT ATTITUDES TO THE HARM COMPONENT OF GBH IN ENGLISH LAW The question of what harm is ipso facto has been explored in the philosophical literature since Mill’s employment of the term,672 most notably in Joel Feinberg’s four-part series The Moral 669 The actus reus of a section 18 offence can be broken down into the following: (1) unlawfully (2a) wound, or (2b) cause any GBH (3) on another person. The mens rea of a section 18 offence can be broken down into the following: (1) maliciously (2a) with intention do some grievous bodily harm or (2b) with an intention to resist or prevent the lawful apprehension or detainment of any person. 670 Moriarty v. Brookes [1834] EWHC 1879 (Admin); JJC (a Minor) v. Eisenhower [1983] 3 WLR 537. 671 JJC (a Minor) v. Eisenhower [1983] 3 WLR 537. 672 Michael Rabenberg, (2015) 'Harm', Journal of Ethics & Social Philosophy, 8(3), pp.1-33. 192 Limits of the Criminal Law.673 This area of work has been fuelled, in part, by Mill’s failure to specify what he means by harm.674 However, despite this interest in the literature, there has not been the same perceived need in the law to clarify the term ‘harm’ ontologically, nor to assist juries in their interpretation of harm, or what its necessary and sufficient conditions are. This lack of conclusiveness is resultant from the typically unquestioned presence of harm in the majority of cases. There has not been the same call to examine what ‘harm’ means because it is usually apparent, and the law preoccupies itself with categorising the harm according to severity and type. Arguably then, for those individuals who are in a position to decide whether harm has been inflicted by one person onto another, as would be the case for a surgeon charged with GBH as a consequence of providing a therapeutic, healthy limb amputation, it is expected that such an arbiter will employ an intuitive understanding. Put simply, they will know harm when they see it. This assumption of the implicit understanding of the nature of harm is articulated explicitly in the case of DPP v. Smith.675 In this case, the question of whether the mens rea of intent to murder is a subjective or an objective test was considered. The defendant claimed that he could not be convicted of murder because he did not possess the required mens rea of intention to kill or to cause GBH. During the Smith judgment, Viscount Kilmuir LC stated that: I can find no warrant for giving the words “grievous bodily harm” a meaning other than that which the words convey in their ordinary and natural meaning. “Bodily harm” needs no explanation, and “grievous” means no more and no less than “really serious.”676 According to Viscount Kilmuir, the word harm, at least when referencing the body, has a natural meaning which is easily accessible, understandable, and contextually appropriate. Consequentially, the term needs neither consideration nor explanation. It would seem 673 Feinberg, The Moral Limits of the Criminal Law: Harm to Others; Feinberg, The Moral Limits of the Criminal Law: Harm to Self; Feinberg, The Moral Limits of the Criminal Law: Harmless Wrongdoing; Feinberg, The Moral Limits of the Criminal Law: Offense to Others. 674 Piers Norris Turner, (2014) '"Harm" and Mill's Harm Principle', Ethics, 124(2), pp.299-326. 675 Director of Public Prosecutions v. Smith [1961] AC 290. 676 Ibid., at 334. 193 reasonable to assume then that an unexamined idea of harm is sufficient to be of use in a legislative and judicial capacity. That is, what people typically mean by harm is adequate for use in the law. This assumption of a natural and self-explanatory idea of harm is further employed in the case of R v. Brown and Stratton.677 This case considered what constitutes grievous in the context of GBH. It was stated that judges should not attempt to define GBH for a jury. Instead, whether something constitutes a charge of GBH should be left for a jury to decide. This deferral to the common knowledge of juries, when it comes to evaluating harm, was endorsed further in R v. Golding.678 In this case, during appeal, the question of whether the qualities of permanent or dangerous were necessary for harm to be considered grievous was considered. The appeal was rejected and the conviction upheld with a decision that ‘[u]ltimately, the assessment of harm done in an individual case in a contested trial would be a matter for the jury, applying contemporary social standards’.679 Once again, in case law, an examination of harm is not mandatory. Merely employing one’s intuitions, informed by coeval and common social standards, suffices. It should be noted that while the nature of GBH in the aforementioned cases was explored, this analysis focused on the severity of harm caused and not what harm was in and of itself. Consequentially, the debate which these cases precipitated should be understood predominantly as a reference to degree and not type. The harm component of GBH was not challenged nor questioned, but rather the categorisation and theoretical boundaries of what constitutes grievous harm were. A similar compartmentalised evaluation of GBH was demonstrated in R v. Ireland and Burstow.680 This case, rather than explore the grievous aspect of GBH like the cases mentioned above, challenged the conceptualisation of the ‘bodily’ component of GBH by exploring whether psychological harm could be considered ‘bodily harm’, and consequentially, under the consideration of the OAPA 1861. The decision was that ‘an 677 R v. Brown and Stratton [1998] Crim LR 485. 678 R v. Golding [2014] EWCA Crim 889. 679 Ibid., at 64. 680 R v. Ireland and Burstow [1997] AC 147. 194 offence of inflicting grievous bodily harm under section 20 of the 1861 Act could be committed even though no physical violence was applied directly or indirectly to the body of the victim’.681 This ruling, while drastically altering the applicational boundary of the offence of GBH,682 once again did not challenge what is to be understood as harm. It merely extended the remit of GBH beyond the physical body into the psychological realm, albeit with specific parameters.683 The phenomenon of harm itself was still to be understood in line with its ‘natural’ definition; that is, any harm is self-evident. Case law, then, has not shied away from critically examining or reconceptualising the theoretical components of GBH in its entirety but merely a single aspect of it, that being harm. Understanding why this oversight exists is beyond the remit of this article. However, it is likely linked to a combination of the common assumption that harm is self-evident and not in need of as much deliberation as that of harm’s severity or locality, as well as the fact that harm is often uncontested; in most criminal cases, the presence of harm in straightforward. However, such an oversimplified concept of harm, one that assumes that the nature of harm, as well as its existence, is derivable from ‘face-value’ judgments, presents considerable challenges in cases where the question of whether harm has even occurred is central. It is to this problem which I now turn. 8.3 WHY THE CLARITY OF HARM IS NEEDED Even if one concedes that the legal conceptualisation of harm is indeterminate and reflexive, this is not the same as accepting that such fluid employment of the term is itself problematic. One could argue that a legal system can effectively employ an undefined concept of harm in a manner that still produces ‘good’ law, ensuring the protection of both individuals and the broader societal good. However, in this article, I hold that this is not the case and that an undefined and non-critical concept of harm is one that necessarily gives rise to inconsistent and theoretically confused legal structures. 681 Ibid., at 156. 682 Faye Boland, (1997) 'Psychiatric Injury and Assault the Immediate Effect of R. v. Ireland, R. v. Burstow', Liverpool Law Review, 19(2), pp.231-239. 683 Jonathan Herring, (1998) 'The Criminalisation of Harassment', The Cambridge Law Journal, 57(1), pp.10-13. 195 The central reason why I hold that the use of an unexplored concept of harm is problematic in judicial decision making comes as a result of the applicational boundaries which the term confers, or to be more precise, the lack of such boundaries. The term harm can potentially be used as a way of prohibiting actions and activities which can be seen as undesirable, immoral, or even perverse, extending the reach of the state, via the application of the law, well beyond its appropriate confines and into the private sphere. Take, for example, the long history of legislation against homosexuality based on the preservation of the moral good and prevention of aberrant harms,684 or the contemporary criminalisation of ‘extreme’ bodily modifications.685 The justification for such prohibitions originates from the idea that harm is something that is to be avoided, be that in individual instances or regarding the protection of society as a whole. As it is the minimum responsibility of the state, via its application of law and per the harm principle, to prevent harm from befalling its citizens as a result of the actions of others, the legal system has a vested interest in restricting and punishing the actions of individuals where necessary. Consequentially, the employment of an unexplored concept of harm in law leaves open the possibility for an almost unbridled level of legal paternalism, enforcing ‘the good’ at the potential cost of autonomy and individual freedom.686 Contrasting this, the employment of an undefined and unconsidered concept of harm in law also makes the justification for the permissibility of specific actions and procedures somewhat opaque. This is especially poignant in situations where one individual is permitted to cause harm to another, with their consent, without that harm conferring onto them any specific benefit. For example, living organ donation of non-regenerative tissue is permitted when that tissue is not essential for life.687 As such, if an individual decided to, they could donate one of their kidneys to another. However, such a donation would put them at risk and constitute them undergoing wounding and prima facie GBH via the removal of healthy bodily tissue, without providing them with any form of benefit, beyond the 684 Buggery Act 1533; Offences Against the Person Act 1861. 685 R v. BM [2018] EWCA Crim 560. 686 Joel Feinberg, (1971) 'Legal Paternalism', Canadian Journal of Philosophy, 1(1), pp.105-124. 687 Law Commission, (1995) Consultation Paper No. 139: Consent in the Criminal Law.; The Human Tissue Act 2004 196 knowledge that they had ‘gifted’ one of their organs to another. As such, the procedure does not confer onto them any form of beneficence. In point of fact, the legality of such altruistic living organ donations was, in the early days of donation, up for debate.688 As such, without a concept of harm that is better understood, this inconsistency and obscurity as to whether specific actions and procedures are contrary to the offence of GBH with intent under section 18 of the OAPA 1861 will undoubtedly continue. Moreover, as inconsistency and obscurity are things that should generally be avoided when it comes to the law, this is an issue that needs resolving. 8.4 BIID AND THE SMITH AMPUTATIONS BIID is a rare condition that leads an individual to feel that a particular aspect of their physical embodiment, most commonly a limb,689 does not correspond with their self- perceived identity. This discrepancy causes them to feel like an impaired person trapped within a non-impaired person’s body.690 This incongruity between their physical embodiment and self-established identity leads to significant and chronic suffering, which impacts their social, occupational and adjustment faculties.691 Several treatments have been employed to address this suffering by resolving this mismatch, including psychotherapy,692 selective serotonin reuptake inhibitors,693 vestibular caloric stimulation,694 cognitive behavioural therapy,695 and several relaxation and mindfulness techniques.696 However, the only method that has indicated a relatively consistent and continuous therapeutic effect, 688 Margaret Brazier and Emma Cave, (2011), Medicine, Patients and the Law, 6th edn. (London: Penguin)., p.522. 689 First and Fisher, 'Body Integrity Identity Disorder: The Persistent Desire to Acquire a Physical Disability'. 690 Gilbert, Whole. 691 Ryan, 'Out on a Limb: The Ethical Management of Body Integrity Identity Disorder'. 692 Kröger, Schnell and Kasten, 'Effects of Psychotherapy on Patients Suffering from Body Integrity Identity Disorder (BIID)'. 693 First, 'Desire for Amputation of a Limb: Paraphilia, Psychosis, or a New Type of Identity Disorder'; Braam et al., 'Investigation of the Syndrome of Apotemnophilia and Course of a Cognitive- Behavioural Therapy'. 694 Ramachandran and McGeoch, 'Can Vestibular Caloric Stimulation Be Used to Treat Apotemnophilia?'. 695 Braam et al., 'Investigation of the Syndrome of Apotemnophilia and Course of a Cognitive- Behavioural Therapy'. 696 Noll and Kasten, 'Body Integrity Identity Disorder (BIID): How Satisfied Are Successful Wannabes'. 197 according to the data available, has been to acquiesce to the request for limb amputation, altering the body to match the identity.697 This suggested beneficial effect of healthy limb amputation has led to debate regarding whether the physical harms of amputation are outweighed by the psychological positives experienced by those with BIID.698 Such discussion can be interpreted as centring on a single question, whether the act of elective amputation causes a net harm or net benefit to those individuals with BIID? The instigating event for this discussion came in 2000 when the UK media reported that Robert Smith, a surgeon at the Falkirk and District Royal Infirmary, undertook two unilateral, above the knee limb amputations, to resolve instances of BIID, at his patient’s request and cost.699 The first was in September 1997 and the second in April 1999.700 Before both procedures, each patient underwent a psychiatric and psychological evaluation to establish their capacity to consent.701 Post-surgery, both patients reported complete satisfaction with the outcome of their operations and being significantly happier after the surgery than before.702 Despite these positive outcomes, however, the surgeries were met with a deluge of negative attention which led to the Scottish government having to clarify that there would be no governmental inquiry into the affair.703 Following media scrutiny, the hospital withdrew its support for any similar operations, and since then, no further UK- based, BIID-driven therapeutic, healthy limb amputations are known to have occurred. 697 Ibid.; Dyer, 'Surgeon Amputated Healthy Legs'; First, 'Desire for Amputation of a Limb: Paraphilia, Psychosis, or a New Type of Identity Disorder'; Blom, Hennekam and Denys, 'Body Integrity Identity Disorder'. 698 Smith and Fisher, 'Healthy Limb Amputation: Ethical and Legal Aspects'; Bayne and Levy, 'Amputees by Choice: Body Integrity Identity Disorder and the Ethics of Amputation'; Smith, 'Should Doctors Amputate Healthy Limbs?'; Müller, 'BIID – under Which Circumstances Would Be Amputations of Healthy Limbs Ethically Justified'; Müller, 'Amputee Envy'; Ryan, 'Out on a Limb: The Ethical Management of Body Integrity Identity Disorder'; Smith, 'Body Integrity Identity Disorder: The Surgeon's Perspective'. 699 Taylor, ''My Left Foot Was Not Part of Me''. 700 Dyer, 'Surgeon Amputated Healthy Legs'. 701 Smith, 'Body Integrity Identity Disorder: The Surgeon's Perspective'. 702 BBC News, ''No Regrets' for Healthy Limb Amputee'; Dyer, 'Surgeon Amputated Healthy Legs'; Kirsty Scott, (7th February 2000) 'Voluntary Amputee Ran Disability Site' The Guardian (London) pp.7 One of the factors that likely contributed to the withdrawal of the hospital’s support for such procedures, as well as the broader clinical profession’s reluctance to make use of the therapy, is the legally grey area in which the procedure can be understood to reside. This indeterminacy principally concerns the offence of GBH as it is this offence under which a surgeon carrying such an operation would likely be charged. Since R v. Brown,704 the presumption in law is that one cannot consent to any act that would cause them ABH or worse. However, as identified by Lord Mustill, enacting this rule without caveats would make vast swaths of everyday activity legally impermissible. Consequentially, exceptions were outlined under which, if an activity fell, consent could be considered valid; these included medical treatment and ‘reasonable surgical interference’.705 This exception means that surgeons can operate on their patients, provided they do so with the permission of someone able to provide valid consent and with a public policy justification, without the fear that they will then be charged with GBH. This is even though they do, prima facie, commit an offence according to section 18 of the OAPA 1861. Much of the speculation regarding the legality of BIID-driven therapeutic, healthy limb amputations has centred on whether the nature of the procedure, and of the condition itself, would invalidate the consent provided by potential patients. Critics have sought to support such a conclusion by comparing the practice with contentious surgical interventions, such as providing stomach stapling services to someone suffering from anorexia nervosa,706 or the removal of an appendix due to a patient’s delusional request that it is cancerous.707 If the consent provided by patients were demonstrated to be invalid due to such a decision having a delusional foundation, this would disqualify those surgeons who facilitate such surgeries from an exception to liability for GBH under section 18 of the OAPA 1861 as they would no longer be carrying out reasonable surgical interference with consent. Consent is established broadly where the individual’s consent is expressed in a legally recognisable manner,708 and 704 R v. Brown [1993] 1 AC 212. 705 Law Commission, Consultation Paper No. 139: Consent in the Criminal Law.; Attorney General's Reference (No.6 of 1980) [1980] 1 QB 715. 706 Müller, 'Body Integrity Identity Disorder (BIID)—Is the Amputation of Healthy Limbs Ethically Justified?'. 707 Smith, 'Should Doctors Amputate Healthy Limbs?'. 708 Collins v. Wilcock [1984] 1 WLR 1172. 199 where that individual has the freedom, capacity, and information to make a meaningful choice.709 Additionally, even if the ability of those with BIID to consent to such surgeries was established, there is a further question regarding what ‘proper medical treatment’ means and where such a concept’s legal boundaries reside.710 The possibility of such a discussion suggests that there is the potential for the practice of elective amputation and those surgeons who carry out the procedure, to be disqualified from the medical exception from the OAPA 1861, not because of a lack of consent, but because the surgery itself is not a medical treatment but akin to body modification, albeit an extreme one.711 This conception of the operation is further complicated by the fact that while an exception from section 18 of the OAPA 1861 for tattooing and body modification does exist, facilitated by Part 8 of the Local Government (Miscellaneous Provisions) Act 1982, again courtesy of R v. Brown,712 the boundary of this exception is more conservative, ambiguous, and inconsistent than that of the medical exemption, with the justification for why some forms of alteration are acceptable, and others not, appearing relatively obscure.713 However, in this article, I seek to defend the operation via an alternative method. Rather than have, as a starting point, that a surgeon invariably commits a section 18 offence and then seek exemption from prosecution by an appeal to the precedent set out in R v. Brown,714 as has been the standard approach so far, I will challenge the assumption that GBH has occurred in the first place. This will be done by critically examining the conceptual component of harm within the offence of GBH, reflecting how ‘grievous’ and ‘bodily’ have been done in common-law previously. By doing so, I will not only defend therapeutic, 709 Re C [1994] 1 WLR 290; [1994] 1 All ER 819. 710 Lucy Frith, (2015) 'What Do We Mean by 'Proper' Medical Treatment?' in Sarah Fovargue and Alexandra Mullock (eds), The Legitimacy of Medical Treatment: What Role for the Medical Exception?, 1st edn, (London: Taylor and Francis). 711 Bridy, 'Confounding Extremities: Surgery at the Medico-Ethical Limits of Self-Modification'. 712 R v. Brown [1993] 1 AC 212. 713 For a recent example of someone falling foul, the ambiguous nature of the exception from section 18 of the OAPA 1861, based on body modification and tattooing. See: R v. BM [2018] EWCA Crim 560. 714 R v. Brown [1993] 1 AC 212. 200 healthy limb amputations in cases of BIID but also seek to clarify the murky conceptualisation of harm at the centre of GBH as well as other harm centric legal concepts. 8.5 METAPHYSICS OF HARM IN GBH As discussed, harm is an essential component of the offence of GBH. The severity and locality of harm can increase or decrease, be singular or distributed, material or psychological. This changeability of attributes can denote differences of degree within the boundary of GBH or alter the nature of a harmful act to be better considered under alternative offences like ABH. However, the conceptual component of harm is not afforded the same transformative quality. Harm is a binary component of GBH in that it is either present or not. For someone to have committed GBH, and therefore be in breach of section 18 of the OAPA 1861, they must have acted in a manner to cause another individual to transition to a new state of being which is said to be harmful, and it is from this new state in which that individual resides that we can say that they have been harmed. Such an account of harm, one which uses the conditions in which an individual exists to understand whether that person has been harmed, is termed a ‘state-based’ account of harm.715 It is with these formulations that this article is principally concerned.716 Three state-based accounts of harms will now be explored: the non-comparative account, the counter-temporal account, and the counter-factual account. The Smith amputations will be explored through each to answer the question of whether, by providing each of the two patients with therapeutic, healthy limb amputations, Smith harmed these individuals. The answer to this question will then be used in determining whether it is appropriate for Smith to be considered as causing GBH if he were not afforded protection from this offence in lieu of the reasonable surgical interference caveat provided in R v. Brown.717 Such a decision will then be extrapolated to the legal status of the surgical intervention in a broader sense. 715 Matthew Hanser, (2008) 'The Metaphysics of Harm', Philosophy and Phenomenological Research, 77(2), pp.421-450. 716 Other accounts of harm exist, such as those that are event-based. However, these fall outside the scope of this article. 717 R v. Brown [1993] 1 AC 212. 201 8.5.1 THE NON-COMPARATIVE ACCOUNT OF HARM The non-comparative account of harm proposes that: [A]n action harms someone if it causes the person to be in a bad state. Bad states are understood as states that are in themselves bad, not bad because they are worse than the state the person would otherwise have been in.718 According to this account, the status of a state as being harmful is not derived from that state’s comparison with another possible state in which an individual would, could, or has found themselves. Instead, the harmful quality of a state is understood as an intrinsic feature of that state; one is harmed simply by being in it.719 Despite the account’s name, not every form of comparison should be disregarded. A proponent of the non-comparative account could hold the view that every account of harm invariably invokes a comparison with an ideal or norm, and it is this comparison that allows a state to go from being a normatively neutral alternative to a harmful state of existence. For example, for someone to say that being born with a missing leg is harmful, is to say that missing the leg is undesirable compared to not missing the leg, the latter being the state of ‘ideal’ functioning which can be interpreted as normatively desirable. This label of harm is applied to the state in which that person resides even though they could never have been in another state; the person born missing a leg could never have been otherwise. As Hanser explains: When a proponent of the non-comparative account says that states of impaired functioning are ‘non-comparatively’ bad, he means rather that it 718 Elizabeth Harman, (2009) 'Harming as Causing Harm' in Melinda A. Roberts and David T. Wasserman (eds), Harming Future Persons: Ethics, Genetics and the Nonidentity Problem, 1st edn, (Dordrecht: Springer Netherlands). 719 It should be noted that this is one version of the non-comparative account of harm and that other slightly altered formulations exist. For example, the version presented by Shiffrin proposes that being harmed ‘primarily involves the imposition of conditions from which the person undergoing them is reasonably alienated or which are strongly at odds with the conditions she would rationally will’ (See: Seana Valentine Shiffrin, (1999) 'Wrongful Life, Procreative Responsibility, and the Significance of Harm', Legal Theory, 5(2), pp.117-148., p.124). However, as it is with the overall structure of the account that this article is concerned, the subtleties between the various sub-accounts are not strictly relevant. 202 is bad for a person to be in such a state regardless of whether a better state was ever a genuine alternative for him.720 This drawing on a comparison to an ideal or normatively desirable state is of particular interest when it comes to an English law interpretation of harm as it resembles the previously mentioned accounts in case law where the nature of GBH has been explored. In R v. Golding,721 for example, when it was stated that the assessment of harm done in an individual case in a contested trial would be a matter for the jury, applying contemporary social standards, this can be interpreted as an instance in which the non-comparative account of harm has been applied within the legal system. For jurors deciding whether an offence of GBH has been caused, they would be expected to apply contemporary social standards. Namely, they would judge the impact of the newly found state of the individual against what would be normatively desirable, and whether this new state has brought about an antithesis of this desired state of being. As such, in this article, I tentatively suggest that the non-comparative account of harm is that account which is most commonly employed within English law as it most closely resembles the approach to harm as demonstrated in case law. When jurors are expected to apply ‘contemporary social standards’, or interpret terms, including harm, according to their ‘ordinary and natural meaning’, this seems equivalent to asking those jurors to compare the state in which an individual resides not to a carefully considered theoretically potential one but rather a socially acceptable and normatively enticing ideal. Returning to the two Smith amputations, the question in need of answering is, did Smith, as a direct result of his actions, transition his patients into an intrinsically harmful state, and as such, harm these individuals? On the surface, the answer to this question would appear to be a straightforward yes. Smith did harm these individuals as he caused them to transition into a state of impairment via making them amputees. However, this assumption has been challenged.722 The conclusion that being an amputee is intrinsically harmful comes from the perception, in line with collective cultural body logic, 720 Hanser, 'The Metaphysics of Harm'., p.426, emphasis in original. 721 R v. Golding [2014] EWCA Crim 889. 722 See: Chapter Six. 203 that to have a ‘complete’ body, with all four limbs, is a normatively better state of being in which to inhabit than to lose a leg to amputation.723 This assumption can be extrapolated into the broader claim that to live one’s life without impairment is better than livings one’s life with an impairment, given all its indicated socio-economic complications,724 as well as associated mental and physical health complexities.725 After all, the majority of individuals are not seeking out elective amputations as such a state is, seemingly, intrinsically undesirable, and this undesirability is a feature of standard social acknowledgement. This attitude is observable in discussions regarding the use of pre-implantation genetic diagnosis to actively select for an embryo likely to possess an impairment, and whether such action causes harm to that embryo as a result of it being born deaf.726 This approach, as it relates to the discussion regarding BIID, is articulated by Sullivan, who, when referring to the argument by Bruno, writes that: Disability…is, then, the antithesis of able-bodiedness (as a natural development state) rather than its complement. Disability is unnatural insofar as it is the result of an accident (whether congenital or social): It is, by definition, both an aberration and an abomination and as such, is literally undesirable.727 It is easy to conclude then that to act in a manner that deliberately moves a person from a state of health and mobility to one of impairment and ‘aberration’ is to cause them significant harm. Consequentially, in the context of the OAPA 1861, it would seem reasonable to conclude that Smith had committed the offence of GBH with intent. However, this form of reasoning illustrates one of the significant criticisms for which the non-comparative account is susceptible. Its reliance on a normative ideal informed by social standards; standards that can be based on less than well-thought-out considerations. 723 Jordan, 'The Rhetorical Limits of the “Plastic Body”'. 724 Powell, Briefing Paper: People with Disabilities in Employment; Eric Emerson et al., (2009) Intellectual and Physical Disability, Social Mobility, Social Inclusion & Health. 725 Turner and Beiser, 'Major Depression and Depressive Symptomatology among the Physically Disabled: Assessing the Role of Chronic Stress'; Cooper et al., 'Multiple Physical and Mental Health Comorbidity in Adults with Intellectual Disabilities: Population-Based Cross-Sectional Analysis'. 726 Petersen, 'Just Diagnosis? Preimplantation Genetic Diagnosis and Injustices to Disabled People'; Melissa Seymour Fahmy, (2011) 'On the Supposed Moral Harm of Selecting for Deafness', Bioethics, 25(3), pp.128-136. 727 Sullivan, 'Body Integrity Identity Disorder (BIID) and the Matter of Ethics'., p.584. 204 Collective judgment regarding anything, including what states are harmful, can be subject to misinformation, biases, manipulation, or outright ignorance. For example, as indicated by Gary L. Albrecht and Patrick J. Devlieger,728 individuals with severe and persistent impairments report their quality of life as being significantly higher than is assumed by external observers. The latter perceive such a daily existence as categorically undesirable. This phenomenon, known as the ‘disability paradox’, has been subsequently reported, albeit with varying explanations and commentaries, in multiple studies.729 This paradox indicates a severe mismatch between the self-evaluated experience of being impaired and the perception of what such an existence is like by those without impairments. This mismatch highlights an issue with the evaluation that being impaired is intrinsically harmful as many of those who are impaired do not believe themselves to have been harmed by the state in which they exist, at least not in the same intrinsic manner in which is assumed by contemporary social standards.730 Indeed, there is a growing movement in which impaired people see their impairment not as something that harms them but rather as a quality of their existence from which they can benefit and in which they take pride.731 For a non-comparative interpretation of harm, as it relates to GBH, to claim that transitioning into a state of impairment is a harm because the state of impairment is a harmful state appears to be not only reductive but also incompatible with the lived experience of impaired people. If those people with impairments do not consider themselves to have been harmed as a result of being an impaired person, then it would appear that there 728 Albrecht and Devlieger, 'The Disability Paradox: High Quality of Life Against All Odds'. 729 Peter A. Ubel et al., (2005) 'Misimagining the Unimaginable: The Disability Paradox and Health Care Decision Making', Health Psychology, 24(4), pp.S57-S62; Charles E. Drum, Willi Horner-Johnson and Gloria L. Krahn, (2008) 'Self-Rated Health and Healthy Days: Examining the “Disability Paradox”', Disability and Health Journal, 1(2), pp.71-78; Nick Watson, (2002) 'Well, I Know This Is Going to Sound Very Strange to You, but I Don't See Myself as a Disabled Person: Identity and Disability', Disability & Society, 17(5), pp.509-527. 730 The argument against the intrinsic harm of impairment can be interpreted as being fundamental to the anti-ableism movement. This movement seeks to highlight that many of the issues associated with impairment are the result not of an essential component of the state but rather of the active and passive ways in which impaired people are excluded from society alongside the benefits which come from adequate societal integration; an exclusion that is not intrinsic but extrinsic. 731 For example, see: Brighton’s annual Disability Pride event (http://www.disabilitypridebrighton.com), as well as Wendy Lu’s article, (2018) 'Disabled People Don't Need to Be "Fixed" - We Need a Cure for Ableism', Everyday Feminism, As such, a non-comparative account of harm seems to provide little considered guidance regarding whether Smith committed the offence of GBH, given that the account relies on a potentially ill-informed caricature of harm built upon unevaluated assumptions regarding what a desirable and healthy body should be. 8.5.2 THE COUNTER-TEMPORAL ACCOUNT OF HARM This article now turns to the counter-temporal account of harm,732 according to which: [T]o suffer a harm is to move from some of well-being to a worse state over some period of time, and to experience a benefit is to move to a better state of well-being over some period of time. In other words, a harm makes us worse-off than we were before the harm occurred.733 Unlike the non-comparative account, the counter-temporal account does not rely, at least explicitly, on impersonal standards or collective norms. Instead, it compares the state in which an individual existed before and after an event. This is then used to determine whether harm has occurred based on the outcome of such a comparison. If that individual is in a worse state than they were before the event, then it is feasible to say that harm has occurred as a result of that event. Consequentially, if an individual was responsible for intentionally causing such an event, then they can be said to have caused that harm with foresight. For example, if person A hits person B with a hammer, breaking person B’s hand, it would make sense to say that person A has harmed person B as they have caused person B to be in a worse state after an action, of which person A was the direct cause, then they were before. 732 This is the preferred term for this formulation of the account. Other names include the temporal comparison, the temporal comparative account, the historical account and the principle of temporal good. See: Bennett Foddy, (2014) 'In Defence of a Temporal Account of Harm and Benefit', American Philosophical Quarterly, 51(2), pp.155-165. 733 Ibid., p.156, emphasis in original. 206 For a charge of GBH then, it would need to be demonstrated that one individual caused another to transition into a state in which their physical or mental well-being (the bodily aspect of GBH) had been altered significantly (the grievous aspect of GBH) in a negative manner, thereby fulfilling the three components of GBH. Regarding the Smith amputations then, the question that would need to be considered is, did Smith, as a direct and intentional result of his actions, transition his patients into a state that is considerably worse off than the state in which they had existed before their elective, healthy limb amputations, and as such, harm his patients? Unlike the non-comparative account, in which there is a need to speculate on the nature of contemporary cultural body logic, with this account, a more considered and research-driven approach is appropriate. Specifically, an account needs to be created of what life was like for those people with BIID before, and after, amputation. It would then be possible to say whether Smith caused counter-temporal harm and, as such, is guilty of causing GBH. To start with, I will look at the case of Kevin Wright, the individual on whom Smith operated in September 1997. Wright, a thirty-year-old postgraduate student, first experienced the symptoms of BIID early in childhood. As time passed, the strength of the desire increased. Before contacting Smith, Wright had sought a psychiatric solution to his condition and, over the ten years preceding his operation, had tried several different forms of psychiatric and psychopharmacological treatment, all to no avail.734 As a result of his BIID, Wright experienced severe periods of depression, which negatively affected many aspects of his life. At one point, due to the considerable distress he experienced, Wright tried to damage his leg by burning it to make an amputation necessary; this attempt failed. This distress also led Wright to contemplate suicide.735 After a psychiatric assessment evaluated Wright as being fully capable of comprehending the consequences of his request and, once Smith obtained clearance from hospital management, the surgeon carried out an above-the- knee amputation on Wright, under general anaesthetic.736 Wright has said that the operation has changed his life for the better, stating that ‘[b]y taking that leg away, that surgeon has 734 Taylor, ''My Left Foot Was Not Part of Me''. 735 BBC News, ''No Regrets' for Healthy Limb Amputee'. 736 Ramsay, 'Controversy over UK Surgeon Who Amputated Healthy Limbs'. 207 made me complete’,737 and ‘[o]f course I am not a different person now, but I might as well be. I have happiness and contentment and life is much more settled, so much easier’.738 Since the operation, Wright has not experienced any further symptoms of BIID, nor has he felt the need for continuing psychiatric treatment, and, while he does occasionally experience a phantom limb, he has not experienced any occasions of phantom pain.739 This account is similar to that of Hans Schaub, the recipient of the second healthy limb amputation carried out by Smith. Much like Wright, Schaub, a fifty-seven-year-old businessman, began experiencing the symptoms of BIID in childhood. Initially, the desire for an amputation had been linked to sexual arousal. However, as time passed and the strength of the desire intensified, this sexual component dissipated to the point of non-existence. By the time Schaub reached his mid-50s, his compulsion to become an amputee had become overwhelming. Schaub planned to injure himself by lying under a train. However, due to the concern of additional injury and death, this plan was abandoned. He experienced repeated periods of depression, for which he took medication, which he linked to his amputation desire remaining unfulfilled. After Schaub was assessed as being fully competent and aware of the consequences of amputation, Smith performed a unilateral, above the knee amputation in April 1999. That same evening, Schaub was moving around on crutches and required no postoperative analgesia. He was discharged five days after undergoing the operation and has reported no additional symptoms of BIID.740 In fact, much like Wright, Schaub stated, during a meeting between himself and Smith in 2000, that the quality of his life has improved because of the removal of the limb, saying that ‘[i]t improved my life quite a bit ‘cos that’s the way I wanted to be, that’s the way it is so I’m quite happy about that’.741 Smith then follows this up by saying: If he wasn’t satisfied with it would he admit it, but if you look at Hans’ life now he’s extroverted, he’s, he [sic] was going to retire from business. He’s now carrying on his business because he finds it’s a new challenge now 737 BBC News, ''No Regrets' for Healthy Limb Amputee'. 738 Ibid. 739 Smith, 'Body Integrity Identity Disorder: The Surgeon's Perspective'. 740 Ibid. 741 Stockley, Complete Obsession - Body Dysmorphia. 208 that he’s an amputee. I, I [sic] certainly don’t think Hans is suffering from having had the operation. I’m pretty definite in my mind that Hans has been enormously benefited by it.742 It is possible, by comparing these two accounts, to draw out some similarities between the pre- and post-operative experiences of Wright and Schaub. Before amputation, both individuals suffered because of BIID. This suffering led to both experiencing bouts of depression which they linked to the presence of the unwanted limb. Both had felt the need to ‘pretend’ to be impaired, either at home or in public. Each had sought out various, less drastic forms of treatment to eliminate the desire with nominal to non-existent success. Both individuals had considered ways in which they could force an amputation to occur: Wright by damaging the leg and then seeking a surgically facilitated amputation; Schaub by amputating the entire limb himself and then seeking medical assistance. During preoperative assessments, both were found to be fully competent to consent to the surgery by the relevant legal and policy standards and were aware of the consequences of such a procedure. After their amputations, each recovered quickly, required minimal to no analgesia, and were discharged from the hospital within less than a week.743 Both have independently stated that the amputations have had a positive impact on their lives, resolving the distress they felt as a result of their BIID and enabling them to engage with the people and world around them more fully. Finally, both have characterised the amputation, not in terms of a loss of bio-matter or functionality but rather as a process of becoming and securing fulfilment. These singular accounts correspond with the academic literature that has examined the pre- and post-amputation experiences of those with BIID. In the studies of First,744 Noll and 742 Ibid. 743 The average period from the day of operation to the day of hospital discharge, for a non-elective amputation is 10 to 14 days; markedly higher than the period for Wright and Schaub. 744 First, 'Desire for Amputation of a Limb: Paraphilia, Psychosis, or a New Type of Identity Disorder'. 209 Kasten,745 Blom et al.,746 Johnson et al.,747 in addition to several case reports748 and anecdotal accounts,749 those with BIID experience significant and chronic distress associated with the presence of the affected limb. Additionally, these same studies reported that those individuals who had been successful in securing a healthy limb amputation also secured a considerable and consistent increase in the congruity between their identities and physical embodiments. This realignment led to markedly improved mental states, with one study participant questioning whether they should even be in a BIID study, stating that “…since my amputation I do not have BIID feelings anymore.”750 For those with BIID, healthy limb amputation appears to be a potentially viable treatment option, at least in the most extreme cases, even though such an intervention runs counter to contemporary body logic. According to available evidence then, there is a compelling argument to be made that Smith did not harm the two individuals on whom he operated as both can be considered to have been conferred a net benefit as a consequence of the surgeries they underwent. Understood holistically, neither were in a worse state after the operation than before but, in fact, better. The relief from suffering which the operations provided was a more significant benefit than the subsequent impairment and disability resulting from the absentee limb. The singular accounts of the benefits of healthy limb amputation, as relayed by Wright and Schaub themselves, are tentatively supported by the broader academic literature into the effectiveness of healthy limb amputation in cases of BIID. Consequentially, there is a strong case to argue that Smith did not commit the offence of GBH with intent according to a counter-temporal account of harm. 745 Noll and Kasten, 'Body Integrity Identity Disorder (BIID): How Satisfied Are Successful Wannabes'. 746 Blom, Hennekam and Denys, 'Body Integrity Identity Disorder'. 747 Johnson, Liew and Aziz-Zadeh, 'Demographics, Learning and Imitation, and Body Schema in Body Integrity Identity Disorder'. 748 Berger et al., 'Nonpsychotic, Nonparaphilic Self-Amputation and the Internet'; Blom et al., 'Body Integrity Identity Disorder Crosses Culture: Case Reports in the Japanese and Chinese Literature'; Braam and de Boer-Kreeft, 'Case Report - the Ultimate Relief; Resolution of the Apotemnophilia Syndrome'. 749 Katie Mercer and Laura Connor, (2017) 'Nick Knows There Is Nothing Wrong with His Leg - but He Still Wants It Amputated', The Mirror, 8.5.3 THE COUNTER-FACTUAL ACCOUNT OF HARM The final state-based account that this article will examine is the counter-factual account of harm, according to which: …harm is caused by comparing what actually happened in a given situation with the ‘counterfacts,’ i.e. what would have occurred had the putatively harmful conduct not taken place. If a person’s interests are worse off than they otherwise would have been then a person will be harmed.751 Much like the counter-temporal account of harm, the counter-factual account draws upon the consequences of an action to facilitate a comparative analysis, and subsequent evaluative judgment, regarding whether such action causes an individual to move into a harmed state and thus be harmed. Unlike the counter-temporal account, however, this account does not use the state in which an individual existed before an act or event as a baseline. Instead, it utilises a theoretical alternative state in which that individual would reasonably have been in had the event or act in question not occurred. As such, while the counter-temporal account employs a retrospective viewpoint, the counter-factual account takes a prospective one. Returning to the example employed earlier, for illustration, if person A hits person B with a hammer, breaking person B’s hand, it will make sense to claim that person A has harmed person B as they have caused person B to be in a worse state after an action, of which person A was the direct cause, then they would have otherwise been, at the same point in time, had they not hit them in the hand. That is, had person A not hit person B with the hammer, person B would have remained unharmed. For a charge of GBH to be entertained, when harm is understood according to a counter- factual interpretation, it would need to be demonstrated that one individual caused another to transition into a state in which their physical or mental well-being had been altered significantly, in a negative manner, from the state in which that person would have otherwise existed, and, as such, has caused that harm individual harm. Regarding the Smith amputations, the question that would need to be answered is whether Smith, as a direct and intentional result of his actions, transitioned his patients into a state that is considerably 751 Craig Purshouse, (2016) 'A Defence of the Counterfactual Account of Harm', Bioethics, 30(4), pp.251-259., p.251. 211 worse off than the state in which those individuals would have been had Smith not performed such healthy limb amputations and as such, grievously harmed his patients? The details utilised in the counter-temporal account of harm relating to the post-amputation experience of both Wright and Schaub, as well as the data present in the academic literature, can be used in this account as well. Doing so will provide the ‘actual’ state against which the possible alternative state of non-amputation will be compared. As already outlined, those individuals who undergo a healthy limb amputation, including both Wright and Schaub, experience a decrease in the incongruity between their physical selves and their self-perceived identities. This decrease leads, in turn, to an increase in their quality of life, and this increase vastly outweighs any difficulties in navigating the world as an impaired individual.752 For example, a respondent to Noll and Kasten’s study, when answering a question relating to the advantages resulting from achieving their desired amputation, replied that: Since living permanently in a wheel-chair (July 2010) I’m free of depressions and can enjoy my life. Even in the wheel-chair I’m able to work in my occupation. Before this, BIID pressed me into a double-life. Now this compulsion is gone. The more atrophy I’m getting in my legs, the easier it becomes for me.753 According to the available literature, neither of Smith’s patients considered suicide or self- harm after the operation, nor did they regret undergoing the procedures. Again, this is replicated in the broader empirical research into the phenomenology of BIID, with none of the respondents to First’s,754 Noll and Kasten’s,755 Blom et al.’s,756 nor Johnson et al.’s757 studies regretting their acquired impairments. The regret most often expressed by respondents to these studies concerns the time and quality of life wasted before the amputation, with 752 Noll and Kasten, 'Body Integrity Identity Disorder (BIID): How Satisfied Are Successful Wannabes'. 753 Ibid., p.226. 754 First, 'Desire for Amputation of a Limb: Paraphilia, Psychosis, or a New Type of Identity Disorder'. 755 Noll and Kasten, 'Body Integrity Identity Disorder (BIID): How Satisfied Are Successful Wannabes'. 756 Blom, Hennekam and Denys, 'Body Integrity Identity Disorder'. 757 Johnson, Liew and Aziz-Zadeh, 'Demographics, Learning and Imitation, and Body Schema in Body Integrity Identity Disorder'. 212 several claiming that the only change they would make regarding their elective amputation is having it earlier. The evidence is clear that those who undergo a healthy limb amputation, to resolve an instance of BIID, typically enjoy a positive outcome as a result of the surgery, at least as indicated by the currently available data.758 To facilitate a counter-factual comparison, what is required is a non-actual alternative state in which an individual who has undergone a healthy limb amputation could/would reside if said amputation had not occurred. However, such a task, as currently imagined, is vast to the point of impossibility. This is because the possible states in which an individual could reside if a particular act did not take place are practically innumerable; the number of states that one could reside in outnumbering the single state in which one does reside. What is required is a narrowing down of the possible states in which an individual could reside into a smaller group of possible states in which it is reasonably foreseeable, and likely, that the same individual would have come to reside in, at that same comparative moment in time, had the amputation not occurred. For such comparison to be made, this article needs to outline, and to a limited degree speculate, the likely state in which Wright and Schaub would have existed had they not received their elective amputations. Firstly, as the question this article is considering relates to Smith’s amputation of Wright’s and Schaub’s limbs, it would be prudent to assume that had he not performed these surgeries, both patients would still have their affected limbs. It is feasible that they could have secured a limb removal via alternative means, such as performing a self-inflicted amputation or securing surgery with another clinician. However, to include these theoretical potentialities in the evaluation of Smith’s actual actions would appear to ascribe too much causal determinism to Smiths actions, or lack thereof. As such, I will assume that each would still have both of their legs. The second assumption I will make is that the instances of BIID, from which Wright and Schaub suffered, did not spontaneously resolve themselves. In other words, both individuals would have continued to have, and suffer from, BIID. This seems a sensible assumption to make given both the longevity of the condition in both 758 This is not to say that further research into the condition is not needed. BIID is an extremely under- researched phenomenon and more research not only into its cause but also the lived experiences of those with the condition both before and after amputation can only be a positive thing. 213 Wright and Schaub’s lives, as well as its resistance to the other forms of treatment that they had tried. Finally, I will assume that no universally accepted form of treatment for BIID has been discovered from the point of the Smith amputations onwards. This absence of treatment option is in keeping with the current lack of sufficient or agreed upon treatment options for those with BIID.759 The form that this theoretical alternative state takes then is as follows; Wright and Schaub continue to suffer from the presence of their limbs as a result of having BIID, and there continue to be no viable treatment options open to them to resolve this. However, with the presence of both limbs, each does not experience any disability as it relates to mobility and can navigate their built environment without any significant degree of impairment. Nor do they experience any of the prejudices or exclusion so often experienced by impaired people.760 By comparing these two accounts, it would seem that there is an argument to be made that Smith did not harm his patients, according to a counter-factual account, as the overall quality of life which his patients experience after their amputation appears to be significantly preferable to that of the theoretical alternative laid out. For Wright and Schaub, to still be ‘whole’ would have meant a continuation of the suffering that they experienced throughout their lives as a direct result of the incongruity between their bodily image and embodiment. The amputations carried out by Smith, while constituting a momentous intervention in the lives of his patients, diverted their futures away from a continued state of distress, dissatisfaction, depression, and despair. This is not to say that Smith’s actions did not have any negative consequences. Living one’s life with an impairment, such as the absence of a lower limb, invariably entails a more complicated relationship with one’s environment; be that physical, social, economic and political, among numerous other facets.761 This increase in complexity can be understood, in turn, as a form of existential harm 759 White, 'Body Integrity Identity Disorder Beyond Amputation: Consent and Liberty'. 760 Ceri Smith and Simon Dixon, (2018) Independent. Confident. Connected. (Scope). 761 National Center on Birth Defects and Developmental Disabilities (NCBDDD), (2018) 'Common Barriers to Participation Experienced by People with Disabilities', Centers for Disease Control and Prevention, For those who undergo an elective amputation, the costs of having a limb removed are a price worth paying as such a surgery allows for a more significant benefit in the mental well-being of those with the disorder. Consequentially, according to the counter-factual account of harm laid out in this article, Smith did not commit the offence of GBH with intent. 8.6 CONCLUSION English criminal law is principally concerned with the prevention of harm and the punishment of those who unduly cause it.762 However, the nature of harm, in and of itself, has remained unexamined. This is not problematic in cases where its presence or nature is easily assumed. However, in borderline cases, where what exactly constitutes harm is critically important, this conceptual ontology can be vital in delineating between the causing or not of serious offences which have harm as a central component, such as GBH. In this article, I sought to examine one such instance where the presence or absence of harm is crucial in understanding the legality of an action, that being the use of therapeutic, healthy limb amputation in cases of BIID. Three state-based accounts of harm were utilised to illustrate the lack of jurisprudential nuance as it relates to the concept of harm and to understand harm’s nature better. Each of these formulations was applied to the two cases of elective amputation carried out by Smith to understand better whether he had committed GBH with intent according to section 18 of the OAPA 1861. The purpose of this article was not to advocate for one account over another but rather to demonstrate that by applying a critical and considered eye to Smith’s actions, it becomes possible to understand healthy limb amputation not as the creation of bodily aberrations but instead as a viable and potentially legal treatment for a condition that causes a lifetime of suffering. The employment of a metaphysically informed concept of harm in English law, beyond instances of BIID, would undoubtedly have disruptive consequences. Such an approach would radically alter how interventions and alterations to the body are categorised, not only 762 Tadros, Wrongs and Crimes. 215 in a legal capacity but also beyond it. Instances where the causing of harm is in dispute would need to be evaluated in a much more considered manner than a simple paternalistic approach which determines that harm is obvious and its presence is validated not by the supposed harmed party but by an external measure. For example, the sentencing of McCarthy for three counts of GBH with intent as a result of the body modification procedures he carried out at his three client’s request would need re-evaluating.763 This is because it can be argued that these procedures have not, in and of themselves, harmed those individuals. They are not worse off now than they were before or would otherwise have been; they are merely different. They are only worse off in comparison with the legally assumed bodily ideal; an ideal that is itself woefully uncritiqued. The employment of a more reflexive concept of harm could also render the medical exception provided by R v. Brown764 redundant, as one would no longer need to appeal to this exception but rather argue that harm itself has not been caused. Put differently, one would not need to argue that they should be excused from causing bodily harm when it is done with consent for an acceptable reason, such as surgery, if they could instead argue that they did not cause any form of harm in the first place. This alternative would go some way to combating the paternalism inherent in the R v. Brown765 ruling and undo some of its legacies that, while not wholly negative, have resulted in a highly critical approach to activities that do not qualify for what can be described as ‘appropriate conduct’. This more nuanced approach to the lawfulness of harm within the law has an advantage over the current patchwork ‘category-based’ system in that such categories are cursory and paternalistic.766 Questions regarding how such an approach would work in tandem with the charging of GBH via wounding would need addressing in subsequent works. However, much like the legal concept of wounding and the other conceptual components of GBH that have been 763 R v. BM [2018] EWCA Crim 560. 764 R v. Brown [1993] 1 AC 212. 765 Ibid. 766 Giles, 'R V Brown: Consensual Harm and the Public Interest'. 216 explored in case law so far, I hold that a clearer understanding of what is meant by the term harm is required. 217 PART III CONCLUSION 218 CHAPTER IX CONCLUSION 9.1 INTRODUCTION The central theme of this thesis was an exploration of the philosophical, social, and legal attitudes towards the practice of healthy limb amputation as a therapeutic measure in cases of BIID, and the impact that neuroprosthetics would have on such attitudes. It sought, concerning this theme, to answer, or at least advance the existing bioethical discussion concerning, three questions: 1. Is the amputation of healthy limbs as a therapeutic measure ethical? And if so… 2. Is it in keeping with the purpose of medical practice? 3. What is the legal standing of such surgeries? Within this concluding chapter, I will review the arguments developed in my thesis articles and elaborate on the common threads that have been gathered throughout this work. I will also highlight the contribution this thesis has made to the existing body of literature, in addition to how the arguments I have presented can be developed into a broader field of research that will have an impact on BIID practice and policy. Before doing so, however, I will present a brief review of the thesis’ structure and why the work contained within was necessary. 9.1.1 PRESENTATION OF THE THESIS Chapters One and Two acted as the first point of introduction to the thesis and the subject matter at hand. Chapter One provided a brief account of the concept of disability, focusing on the historical shift of the cause of the phenomenon from the singular to the collective. It also introduced the reader to the Smith operations, their motivation, and the backlash which they precipitated. Chapter Two gave a fuller account of the phenomenon of BIID. This included the emergence of the condition into the medical zeitgeist, its key symptomatic features, and the lack of well-defined pathogenesis. 219 To answer this thesis’ research questions, Chapter Three presented a general background to the philosophical and legal debates in cases of BIID and the considerations of whether therapeutic, healthy limb amputation is a viable treatment option. I began by considering the capacity of those with BIID and whether those with the condition can provide free and autonomous consent for a surgery that is motivated by their desire for healthy limb amputation. I explored some of the concerns put forward by critics of the practice, specifically regarding: (i) the coercive influence that such a condition would have on someone’s ability to exercise independent decision making;767 and, (ii) the ability of those with BIID to have a sufficient level of insight into their condition and the ramifications of electing to have a limb amputated.768 Counterarguments to these points were presented, which suggested that those with BIID do not suffer from a delusional condition, invalidating the deliberately evocative comparisons critics of the procedure have made, as well as arguing that those with BIID can have insight into their condition, and the consequences of undergoing an amputation, to a necessary degree. From here, I then went onto provide an account of the debate concerning the principle of beneficence and whether such operations would be in breach of this precept or instead promote it. This examination was broken down into four sections: (i) the effectiveness of elective amputations as a therapeutic measure for BIID;769 (ii) the sustainability of any therapeutic effect;770 (iii) the existence of a less drastic treatment option;771 and (iv) the use of the operation as a means of preventing worse outcomes.772 Within this section, using the available empirical and anecdotal evidence, I demonstrated that there is reason to suspect that elective amputations are an effective treatment option for those with BIID as the majority of individuals who have been successful in securing an operation have experienced a marked increase in their well-being as a result. This increase is also indicated to be long-lasting as that same data has shown that individuals continue to be satisfied with their newfound bodily constructions for extended periods after the operation 767 See: §.3.2.1. 768 See: §.3.2.2. 769 See: §.3.3.1. 770 See: §.3.3.2. 771 See: §.3.3.3. 772 See: §.3.3.4. 220 with little to no sign of a diminishing return. This sustained beneficial effect was then contrasted against the results of attempts to treat the disorder using a range of other, non- surgical methods which, again according to the available data, have a little-to-no positive effect, and in the worst cases, can increase the desire for amputation. Finally, in this section, I considered whether amputations could be justified as a therapeutic intervention on the basis that they could act as a form of harm prevention, preventing an individual from taking matters into their own hands and risking their lives. From here, I then moved onto look at the inverse of beneficence, that being nonmaleficence and the considerations surrounding what obligations clinical professionals have not to harm those seeking a healthy limb amputation. I approached the principle from several angles which explored: (i) the general risks associated with surgical interventions and the obligations of clinicians to avoid exposing patients to them wherever possible;773 (ii) how harm can be understood in terms of the destruction and removal of healthy bodily tissue;774 and, (iii) the envisioned harm by transitioning an individual to a state of disability from one of non-disability.775 I argued that the justifications that allow for relatively commonplace surgical interventions, such as altruistic living organ donation, could also be used as a means to justify elective amputations. I also suggested that concerns regarding the causing of harm by the removal or damage of healthy tissue in cases of elective amputation could be addressed by drawing on the justifications used in more typical operations. This was explicitly done regarding the proposition that the mantra of ‘first, do no harm’ is only effective at guiding actions if it is interpreted as ‘first, do no net harm’. Finally, within this section, and of note within this thesis, I argued that while concerns regarding the causing of disability are valid, the assumption that disability and impairment are synonymous is incorrect; the two, while often correlated, can be understood as being separate phenomena. This was supported by a brief exploration of the link between health, disability, and technology. 773 See: §.3.4.1. 774 See: §.3.4.2. 775 See: §.3.4.3. 221 The next section moved onto explore the debate concerning justice and the broader societal impact that the availability of such surgeries would have.776 Following the typical focus in the literature, this primarily took the form of economic concerns and questions regarding not only who would pay for amputations in the first instance, but also what impact these amputations would have on an additional demand for societal resources. I examined the counterarguments to such propositions and explored the discussions concerning whether such amputations would inextricably place additional demands on society, or could reduce demands because those who do not spend their lives living with an identity disorder tend to be more well-adjusted and productive members of society. This was supported by a brief exploration of the post-amputation accounts provided by Noll and Kasten,777 as well as argued by Smith.778 The final section of Chapter Three moved away from strictly philosophical concerns and towards those of a legal nature.779 Within this section, an account of the potential charges a surgeon who carries out an elective amputation would be faced with was given.780 This was explicitly done concerning causing GBH with intention contrary to section 18 of the OAPA 1861. The background was given to how surgeons who provide more conventional surgeries avoid this charge courtesy of the medical exception afforded by R v. Brown,781 as were the qualities necessary for eligibility for this exception. This section also provided a brief account of the second-degree murder conviction of John Ronald Brown, by the state of California, following a poorly performed elective amputation. From this point, this section then went onto provide an account of the nuances and preconceptions involved in the application of a GBH charge in a BIID case. This account included looking to precedent and parallels in other cases which, while not having an overabundance of shared factors with a theoretical BIID, GBH charge, could be drawn upon 776 See: §.3.5. 777 Noll and Kasten, 'Body Integrity Identity Disorder (BIID): How Satisfied Are Successful Wannabes'. 778 Smith, 'Body Integrity Identity Disorder: A Problem of Perception?'. 779 See: §.3.6. 780 See: §.3.6.1. 781 R v. Brown [1993] 1 AC 212. 222 to provide some insight into how a charge would be applied, and potentially, how a defence against such a charge could be mounted. With all this in mind, I identified four questions that I would answer within the articles of this thesis. Each of which would assist me in tackling the central research questions. These were: 1. Is the statistically common bodily form the only one which can claim the title of the ‘ideal’ healthy body, or can other, atypical constructions make similar claims, thereby transforming health from an unobtainable perfection to a relative goal? 2. Are the prima facie harms associated with disability inherent to the post-amputation form, or can impairment and disability be separated, and what impact would this separation have on the ethics of therapeutic, healthy limb amputation? 3. What impact will advancements in assistive technologies, such as artificial limbs, have on the ethical viability of healthy limb amputations? 4. What does it mean to say that one has caused harm in the context of the offence of GBH, and would a surgeon providing a healthy limb amputation commit such an offence? In Chapter Four, I explored the various approaches I could have taken to answering these questions as embodied in my thesis articles. Section 4.2 provided reasoning on why I had narrowed my investigative scope to that of health, disability, and neuroprosthetics. This was done to highlight that despite the bioethical interest in the condition and the phenomenon of healthy limb amputation, little work has been done from a disabilities study or science and technology approach. As a result, this has created a gap in the literature that needs filling to provide a better philosophical and legal approach to therapeutic considerations. Within Section 4.3, I laid out the groundwork for the broad background assumptions and principles upon which my thesis articles were built. This was focused upon two central points: (i) that individuals have a right to self-ownership of their bodies, and this precipitates respect for autonomy;782 and, (ii) that the rights and moral standing of people 782 See: §.4.3.1. 223 with impairments are equivalent to that of the non-impaired, and that by having an impairment one’s moral status claims are in no way diminished.783 Section 4.4 then provided an account, not of background assumptions, but rather, of the critical models and theoretical influences according to with which this thesis has worked. I started by giving a history and explanation of both Boorse’s BST and the SMD.784 I then explained why these two models were taken as representatives of their relative naturalistic and normative philosophical approaches. From here, I then went on to explore Canguilhem’s The Normal and the Pathological.785 This included giving an account of the book’s main themes and ideas, and specifically, how Canguilhem argues against the idea that the statistically common body necessary equates to the healthy bodily form; a theme that was employed within all four of my thesis articles. Finally, within Chapter Four, I moved from the strictly philosophically bioethical concerns of the thesis and towards those of jurisprudence and law.786 In this final section, I explored both the necessary division between law and morality,787 alongside the appropriate limits which should be placed upon a legal system within a liberal society, such as the one in which we live.788 This was done to provide an essential background to all of my thesis papers, but most notably, Paper Four (Chapter Eight) which explored how harm is conceptualised within English law. It was from here that I then moved away from the background work which underpins this thesis and into Part Two, which was comprised of four thesis articles and constituted the principle novel arguments of this thesis. 9.2 PRINCIPAL ARGUMENTS Moving from an examination of the work that has been carried out by other researchers and from the foundational assumptions upon which my thesis articles rest, Part Two of the thesis transitioned into developing these existing works and forwarding the arguments related to 783 See: §.4.3.2. 784 See: §.4.4.1 and §.4.4.2, respectively. 785 See: §.4.4.3. 786 See: §.4.5. 787 See: §.4.5.1. 788 See: §.4.5.2. 224 the provision of healthy limb amputation as a therapeutic measure in cases of BIID. While each article stands on its own as an individual piece, there are common themes that run through them, which act to create an overarching narrative. It is to an account of these themes and this narrative that I now turn. 9.2.1 COMMONALITY DOES NOT EQUAL HEALTH NOR DOES DIVERGENCE EQUAL DEVIANCY This theme is critical to the case presented in this work and is one that permeates the entire thesis. To have a bodily construction that is in line with the statistically common form is not synonymous with being healthy, nor is a divergence from this typical construction necessary nor sufficient for a labelling of pathology. To have a more comprehensive account of health and pathology requires not merely that one measure the particular against the common, but rather, that one approaches the subject of health from a more nuanced, holistic, and grounded method. The Desirability of Difference: Georges Canguilhem and Body Integrity Identity Disorder (Chapter Five) addressed this commonplace conflation of statistical observations and normative evaluations as it regards the bodily format, and in particular, as it concerns therapeutic, healthy limb amputation in cases of BIID. As was noted within this article, the conflation of the normal with the statistically common has not always existed. Before the 19th century, the individual patient was the source of medical knowledge. They were the ones who would come forward, presenting themselves to clinicians as feeling ill. The successful restoration or obtaining of health was determined by how that person felt and not against a body of medical statistics born from a comprehensive capture of biological data. Nevertheless, with the 19th century came the advent of the data-driven concept of health, and importantly, the ‘normal man’ — the average state of being that was both obtainable and desirable. To be different from this statistically ordinary being was to be in ill-health and, as I have argued, this promotion of the biological normal is something which is still going strong today, as embodied by the BST. 225 For accounts like the BST, the idea of a therapeutic, healthy limb amputation is an oxymoron; a healthy limb amputation cannot be therapeutic. It can only be an event that transitions someone into a state that is lesser than that of the average person. However, those with BIID directly challenge this conflation of the normal with the healthy by providing an example where having a normal embodiment is the very thing that is causing them to exist in a state of pathology. Naturalistic accounts of health, pathology, and disability struggle to come to terms with the concept of a therapeutic, healthy limb amputation as being a beneficial measure as it transitions those who undergo the procedure into, according to such accounts, a distinct pathological state. Accounts of health that do not anchor themselves to the conflation of the normal and the healthy avoid this issue, as demonstrated by Canguilhem’s theory of health. Canguilhem’s theory is one that abhors the static nature so inherent in naturalistic accounts. For Canguilhem, health is not understood according to a repressive statistical norm that demands conformity but rather by the relationship an individual has with their environment, both material and milieu. Thus, one can deviate from what is familiar and still be healthy, provided that they can instil new norms in the face of challenges. Rather than there being a single universally obtainable normal body against which health is measured, the healthy body can take multiple forms. As Canguilhem writes, “[a]t every moment, there lie within us many more physiological possibilities than physiology would tell us.”789 Therapeutic, healthy limb amputation, according to such a nuanced model, is not contradictory. Such a procedure can further the goal of medicine – that being the restoration and maintenance of health – when one considers health in a more nuanced and person- centric manner. When an intervention benefits those undergoing it and causes a reduction in the suffering they experience, then it should be considered as promoting the health of an individual, regardless of whether such an intervention moves that person closer or further away from the ‘normal man’. This rejection of the inherent desirability of medical normality is a theme carried over from Article One (Chapter Five) and runs throughout the rest of the thesis. In each article, I took 789 Canguilhem, The Normal and the Pathological., p.100. 226 as a starting point that simply because one does not conform to the common bodily format, nor that one’s desires are atypical, does not mean that they should be deemed as inhabiting or desiring the pathological, nor should it be taken that such desires are themselves unequivocally symptomatic of a catastrophic failure of mental health. 9.2.2 DISABILITY NEED NOT FOLLOW AMPUTATION The second key argument made in this thesis is that it is possible to give someone an impairment without also conferring onto them a disability. Though this argument is chiefly made in the articles Elective Impairment minus Elective Disability: The Social Model of Disability and Body Integrity Identity Disorder (Chapter Six) and Elective Amputation and Neuroprosthetics (Chapter Seven), it has echoes elsewhere in the thesis. The argument rests on the idea that what it is to be disabled is not the same as what it is to be impaired; a distinction that is profoundly shaped by the SMD. While there is often a correlation between the two phenomena, this does not mean that where one exists, the other must necessarily follow. This pairing of the two results from the assumption that to have an impairment is to experience the disabling effects of having a body that is different in a society designed for the statistically common form; i.e. two legs, two arms, sight, hearing, and so on. Common social body logic dictates that by having an impairment, one is disabled because that person is then less able to interact with their environment in as carefree a manner as those who do not have an impairment. Moving up a flight of stairs for someone with two legs is, for the most part, a much less trying experience than someone who uses a wheelchair. As such, according to such a naturalistic account, having an impairment is an inherently disabling quality. The appropriate response to this is to employ medical and scientific interventions to restore that person to the typical species functioning exhibited by others, and thereby remove the disability that they experience. This conflation of the two is not only fallacious, for reasons explored in Chapters Six and Seven, but in cases of BIID, it prohibits a potential treatment option for those with the condition based upon a reluctance to give people disabilities at their request. While this reluctance to create disability is something with which I agreed, I posited that because impairment and disability are separable, it can be possible to give someone an impairment without also enforcing upon them a lifetime of disability. 227 If we are to understand disability in more nuanced terms than only ‘that person is missing a leg, therefore they are disabled’, and ground our understanding of disability in the lived experience of those with impairments, then there is an argument to be made that those with BIID, who undergo a healthy limb amputation, are less disabled post-amputation then pre- amputation. Something which was noted in the Blom et al. 790 Paradoxically, at least from a cursory glance, to assist those with BIID to reduce their experience of disability, we need to provide them with access to therapeutic, healthy limb amputation. As far as the current body of evidence suggests, the best way to move those with BIID out of a state of experienced disability is by conferring onto them a disability as commonly understood. 9.2.2.1 TECHNOLOGY CAN FACILITATE THIS DECOUPLING OF IMPAIRMENT AND DISABILITY A subset of this argument for the decoupling of impairment from disability, and which was the focus of Article Three (Chapter Seven), looked at the potential impact that neuroprosthetic technology would have on the practice of healthy limb amputation. The motivation for this branch of discussion came from the idea that for one to claim that therapeutic, healthy limb amputation be considered unethical due to the disability such operations create, then such surgeries must create more disability than before such an intervention. Put otherwise, losing a biological limb must cause more disability than possessing it. Such a claim exists in a conceptual bubble where the impact of other factors that influence the practice and operations of clinical practice are ignored. Similarly, when making such a claim, one must ignore the fact that assistive technologies have the potential to mitigate the disabling effects of having an impairment, as they have done previously. This is critical because the availability and status of medical technology and sciences have a fundamental impact on the permissibility of all clinical interventions. If a clinical intervention cannot be carried out successfully because the required technology and scientific know-how does not exist, then it would be not only impractical to try and carry out such an intervention but also 790 Blom, Hennekam and Denys, 'Body Integrity Identity Disorder'. 228 unethical. Heart transplant surgery was impermissible until the technology and knowledge base existed to allow such surgeries to have a reasonable chance of success. It was a similar train of thought that brought this theme into being; that the (im)permissibility of healthy limb amputation is in part dependent on what technologies exist to assist those who undergo such a procedure after amputation. Both critics and proponents of healthy limb amputation assume that such operations create a disability where none existed before. Where the two camps diverge is in their valuation of this disability against the relief from suffering an amputation provides. Opponents argue that the cost of disability is too high; proponents argue otherwise. The creation and further development of neuroprosthetics will have a fundamental impact on the permissibility of such operations. This is because these technologies blur the already vague line between what it is to be disabled and not; a delineating line that is socially constructed. If someone were to undergo a healthy limb amputation, but then have the option available to them to replace their now ‘missing’ limb with a neuroprosthetic replacement which functioned at the same level as that of their original biological limb, then in what way do they become disabled? In this thesis, I have argued that they would not. The material construction of the limb should not matter when it comes to the labelling of disability. Disability should be understood as a constriction of opportunity and a source of suffering, not a label that is applied to an individual because of their lack of compliance with a biological norm. 9.2.3 HARM IS BEST UNDERSTOOD IN TERMS OF THE PARTICULAR RATHER THAN THE ABSTRACT A final theme running throughout this thesis concerns the nature of harm. This is most notably reflected upon in No Harm, No Foul? Body Integrity Identity Disorder and the Metaphysics of Grievous Bodily Harm (Chapter Eight), in which I argued that there is a growing need for a more sophisticated understanding of the concept of harm in English law, and used BIID as a means of illustrating this point. Harm, as it is currently employed within the English legal system, is woefully underdeveloped. This underdevelopment is one of the reasons why there is confusion 229 around whether therapeutic, healthy limb amputation can be considered legal. It appears on the surface that such operations do harm those that undergo them because we are so used to thinking of being an amputee, and thus as being disabled, as a harmful state. Therefore, someone who intentionally transitions a patient into such a state causes them significant harm by doing so. A more reflective idea of harm, one that is born from the actual experiences of an individual, would go some way to combatting this confusion, clarifying some parts of the legal system that are currently somewhat obfuscated because of a lack of conceptual clarity; a lack that invites rudimentary and reflexive thinking. If one is to make a case for employing the legal system as a method for prohibiting an action based on harm prevention, then there should be a crystal clear understanding of what harm is and what it is we mean when we say that person x has harmed person y. Without such an understanding, one runs the risk of basing judicial decision upon nothing more than prejudicial assumptions about what individuals should be allowed to do with their bodies, and what bodies should look like, under the guise of preventing harm. By employing a person-centric understanding of harm, one in which the nature of harm is not one that is constructed from a top-down approach, but rather, from the experience of individuals, this potential paternalistic inclination can be better avoided. Rather than the law telling people they have been harmed according to an abstract and unreflective notion, people would be better served by a legal system that takes their experience of harm as the starting point for the prohibition and punishment of an action. 9.3 CONTRIBUTION TO THE LITERATURE The various arguments presented in this work, and the overall narrative which it has built is, as far as I am aware, novel. My arguments have been built upon a foundation laid out by many others working in the fields of bioethics and medical jurisprudence, and they are acknowledged throughout this work. What I have accomplished with this thesis is to take the debate concerning amputation in cases of BIID, moving it forward where possible and deconstructing it where necessary. My goal was to take the debate in a new direction, one that is not based upon the weighing-up of the harms of amputation against the relief from 230 suffering, but rather, one that does not assume that being impaired is an inherently bad thing. I do not believe that this thesis is the first to start down such a theoretical avenue. Reynolds and Sullivan have written works with a somewhat similar aim.791 However, I do believe that few, if any, have approached the debate in the same manner as I have, particularly concerning Canguilhem’s work, the development of neuroprosthetic technologies and their impact on the ethical evaluation of therapeutic, healthy limb amputation, and the practice’s legal standing. There has been a steady frequency in the publication of articles and works that call for a more considered and less reflexive evaluation of the potential benefit that therapeutic, healthy limb amputation could afford those with BIID. This evaluation has been conducted upon a theoretical foundation riddled with ableist conceptions about the superiority of the ‘whole’ body over its impaired counterpart. This is something which I have, and will continue to, contend is faulty until I am proven wrong. The reason for making the case here that healthy limb amputation can be a viable treatment option for those suffering from BIID was to provide a new avenue of thinking through which the ethical and legal issues that such operations create can be fruitfully explored. By asking the questions of what do we mean when we use the term harm? What is it to be disabled? And what is the purpose of medical practice? I have developed here an insight into what it is that ought to matter when it comes to examining what bodily forms are (un)desirable. I propose that using the arguments forwarded in this thesis as a conceptual foundation is vital to properly consider whether therapeutic, healthy limb amputation is ethically permissible and legally viable. This approach is one that I do not believe has been endorsed elsewhere in the context of BIID treatment options. By deconstructing the presumption that a person suffering from BIID is inherently harmed by undergoing a healthy limb amputation through the imparting of a state of disability 791 Reynolds, 'Toward a Critical Theory of Harm: Ableism, Normativity, and Transability (BIID)'; Sullivan, 'Body Integrity Identity Disorder (BIID) and the Matter of Ethics'. 231 where there was none before, I am making a novel claim on a debate that was begun in 1977 with the Money et al. paper,792 and turbocharged in 2000 with the Smith amputations. Others have argued that therapeutic, healthy limb amputation is ethically and legally viable because it confers onto an individual undergoing the procedure a net increase in their well- being and a reduction in the suffering they experience. Here, while I agree with their conclusion, I suggest that how they come to it through offsetting the harms of being impaired is faulty. Impairment is not a negative difference, it is but a mere-difference, and while disability is a harm, this harm is not inevitable. The first paper, The Desirability of Difference: Georges Canguilhem and Body Integrity Identity Disorder, presented the novel argument that electing for a healthy limb amputation, as a means of addressing the distress associated with BIID, can be considered appropriate medical treatment. This is not because of the beneficial effects of such a surgery, according to a swooping ontological idea of health, but instead because there is more than one format that can lay claim to the title of the healthy bodily form. This argument was supported by an appeal to the work of philosopher Georges Canguilhem. Taking inspiration from the SMD, the second paper, Elective Impairment minus Elective Disability: The Social Model of Disability and Body Integrity Identity Disorder, argued that given the unique and rare circumstances and factors in play in cases of BIID, the imparting of impairments on previously non-impaired individuals could be ethically permissible. This was an approach to the topic which had not been given explicit consideration outside of some of Reynold’s work.793 This by itself makes it a valuable contribution to the BIID debate as it destabilises the ableist foundation upon which the vast majority of the work has been built. I offer an alternative in which impairment is not seen as inherently disabling, but in the right context, as a mere-difference. This argument for the disentanglement of impairment and disability was then supported in the third paper, Elective Amputation and Neuroprosthetics. Here, I explored the potential that advanced prosthetic limbs have for reaching a level of functional utility matching that of a 792 Money, Jobaris and Furth, 'Apotemnophilia: Two Cases of Self‐Demand Amputation as a Paraphilia'. 793 Reynolds, 'Toward a Critical Theory of Harm: Ableism, Normativity, and Transability (BIID)'. 232 biological limb. This potentiality was then used as a means of illustrating how the act of amputation could indeed avoid resulting in disability. This is the first paper, which I am aware of, to explore the healthy limb amputation debate from a prosthetics angle. The final paper of this thesis, No Harm, No Foul? Body Integrity Identity Disorder and the Metaphysics of Grievous Bodily Harm, delivers on the jurisprudential nature of the BIID-driven healthy limb amputation debate. Here, I used BIID as a means of illustrating the lack of conceptual clarity surrounding the idea of harm within the English legal system, as well as the need for a greater understanding. The contribution of this paper is potentially vast as it opens an avenue of legal thinking which has not yet been considered. Harm is a critical component in multiple legal mechanisms, as well as being a critical foundational bedrock upon which law itself is built. This paper is the first to identify that the nature of this component is simply assumed and, specifically regarding the R v. Brown794 decision, this assumption has led to a patchwork system of exceptions and mitigations to the tort of GBH. 9.4 FUTURE RESEARCH Each paper in this thesis has contributed to the existing literature regarding BIID-driven therapeutic, healthy limb amputation and in related fields in a range of ways. I am confident that the overarching themes of this thesis, alongside the original approaches undertaken in each of the thesis articles, will act as a fruitful foundation upon which further research can be developed. Most notably, with the need established for a most considered and less reflexive approach to the ethical and legal questions surrounding healthy limb amputation, there is most likely to be a wealth of more in-depth socio-legal research to be done on fully illuminating the legal nature of harm and the healthy body’s multiplicity. As pointed out at several points within this thesis, BIID is under-researched. As such, there is a distinct lack of empirical data regarding not only what causes the disorder but also the experiences of those with the condition. To that end, my intention beyond this thesis is to address this gap by conducting a series of qualitative interviews with those who have the condition. These interviews would aim to better understand the effectiveness of healthy limb amputation as a therapeutic measure, specifically to look to the long-term beneficial 794 R v. Brown [1993] 1 AC 212. 233 effects. Furthermore, I would also seek to understand whether those with BIID would make use of a neuroprosthetic that had the functional equivalency of a biological limb. Additionally, and further developing the arguments proposed in Article Four (Chapter Eight), I intend to explore the possibility of using the nebulous legal nature of harm as a means of defending a surgeon who carries out a healthy limb amputation for therapeutic effect. This would most likely require legal expertise that sits outside my wheelhouse. Thus, I would seek to develop this branch of my research in conjunction with someone who has practical knowledge of the English legal system. Finally, and moving somewhat away from the BIID focus of the works here, I would also be interested in developing my arguments concerning the broader field of body modification. This branch of my future work would seek to understand better the nature of radical body modification, one’s relationship to their body, as well as the legal and regulatory mechanisms put in place to permit as well as curtail such alterations. The main focus of this research would be to understand better the foundations upon which acceptable and unacceptable body modification is built, and hopefully, to illuminate where such a delineation between the two is formed from prejudicial judgements and overtly bio- conservative mentalities. 9.5 CLOSING REMARKS Writing this thesis has provided me with the unique opportunity to draw together many of my varying research interests into an overarching academic narrative through the inclusion of several published materials. By addressing the nature of healthcare practice; the relationship between disability and impairment; the impact of technology on the so-called ‘typically’ non-disabled bodily form; and the nature of harm within the English legal system, I have been able to construct a robust argument in favour of permitting therapeutic, healthy limb amputation in cases of BIID; or, at the very least, a solid case for not assuming that such requests for unusual therapeutic interventions are categorically absurd and out of the question merely because of an adherence, deliberative or otherwise, to a simultaneously subversive and conservative ableist paradigm. 234 The desires of those with BIID to impair their classically healthy bodies is alien to most of us. Indeed, I struggle to understand what it must be like to desire something that is so different from how I experience my own life and the relationship I have with my body. Nevertheless, the fact that I do not have access to that first-person perspective is by no means a sufficient reason to dismiss such a desire as a symptom of mental illness—something which several opponents to BIID-driven amputations do. This is not a topic that is merely an exercise in mental gymnastics, despite its semblance to a thought experiment. Real people in the world live with BIID, and more than that, they suffer from it. If one is to suggest that those with this condition should not have access to healthy limb amputation, despite the evidence which suggests that such operations can have a therapeutic benefit, then there needs to be an excellent reason to make this case. However, those reasons, at this moment in time, do not exist. The available data suggests that healthy limb amputation can work as a means of resolving the distress and suffering those with BIID experience and that this beneficial effect is long-lasting. 235 END MATTER 236 APPENDIX A. 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