Pandemic Praxis Commentary on 'All Bodies': Indian perspective

Satendra Singh, MD

Deputy Editor­in­chief, RHiME and Associate Professor, Physiology, University College of Medical Sciences and GTB Hospital, University of ,

Corresponding Author: Dr. Satendra Singh Department of Physiology, UCMS and GTB Hospital Delhi 110095, India Email: dr.satendra at gmail dot com

Received: 19­MAY­2020 Accepted: 19­MAY­2020 Published Online: 21­MAY­2020

The commentary is in response to the graphic titled "All Bodies" which is accessible at http://rhime.in/ojs

Artist Michaela Oteri @Ogrefairy "All Bodies"

Source: Oteri M. All Bodies. RHiME. 2020;7:106­7.

Unlocking Ubiquity the frame. The three in front have visible Absorbing the painting as a person with a disabilities as they clench their fists in disability in general and a doctor with a solidarity while being supported by their disability in particular, I can’t ignore the assistive devices (a prosthesis, a crutch, disabled lives lost in the pandemic (from and a wheelchair). The picture also COVID­19 or non­virus causes exacerbated embraces the much­neglected area of by pandemic). These people, to me, are the invisible disabilities and intersectionality. palest figures shown as trying to fade out of The message is loud and clear ­ all lives matter and nobody is disposable ­ be it

Cite this article as: Singh S. Commentary on 'All Bodies': Indian perspective. RHiME. 2020;7:112-5. www.rhime.in 112 disabled people, elderly, people of color, (identifying procedures to tackle medical migrants, or transgender people. emergencies), rationing (identifying protocols to support multi­agency and multi­ Crip Camp, the Netflix documentary disciplinary collaboration), and triage released during the lockdown, explained (identifying how limited resources will be how a New York campground for people allocated to support medical care).[6] with disabilities inspired the American Disability Rights movement. For me, the The National Preparedness Survey on defining moment in the documentary was COVID­19 by the Department of when the protestors (some sitting in their Administrative Reform and Public wheelchairs and others leaning on Grievance uncovered what we were fearing crutches) abandoned their assistive devices ­ there are insufficient ICU beds and and began climbing the 78 marble steps up ventilators.[7] On March 29, eleven the Capitol. It was the coming of age of an Empowered Groups were constituted by the international disability rights movement. The Ministry of Home Affairs for planning and sight of protestors against the backdrop of ensuring the implementation of COVID­19 “Injustice anywhere is a threat to justice response activities. The Chairman of everywhere” gels equally well with this Empowered Group­3 admitted that India artwork: #NoBodyIsDisposable. needed 75,000 ventilators and had only 19,000. Why ‘One Size Fits All’ Doesn’t Work in a Pandemic All of us struggle with the isolation of a On 24 March 2020, to fight COVID­19, the quarantined life and with the uncertainties Indian Government put in place a of a pandemic; however, many disabled nationwide lockdown under the provisions people have always had to manage such of the Disaster Management Act, 2005. The isolation, irrespective of pandemics. National Disaster Management Guidelines Moreover, with the acute shortage of (Hospital safety) describe how hospitals are ventilators, now doctors have to make the to act during a National Disaster. The dreaded decision of who lives and who section on triage contains merely a single dies. The disability sector is fearful that page guidance and utilizes the principle of these decisions will be based on “sickest first”.[1] The guiding ethical practitioners’ traditional prejudices and principles of ‘first­come, first­served’ are biases, especially on the surmised quality of clearly not suited for application to the life and the imagined social worth of people COVID­19 pandemic; however, even the with disabilities. ‘sickest first’ or ‘youngest first’ should be used with great caution and only when it Nothing About Us, Without Us aligns with the principle of maximizing The reason discrimination against disabled benefits.[2] people creeps easily into such medical decision­making is because of deficit­based Beauchamp and Childress’s bioethics perspectives (medical model of disability). It framework is built on four moral principles: took doctors with disabilities, in partnership respect for autonomy, beneficence, with activists and health professions nonmaleficence, and justice.[3] A deficiency educators, to frame disability competencies of this structure is that little experimental for health professions courses; the purpose proof exists showing that physicians utilize was to tackle such stereotypes and promote the four principles in ethical decision the human rights model of disability.[8] It is making.[4] Jonsen, Siegler, and Winslade unethical to use stereotypes about an bridged the gap by pioneering the “four­ individual's disability to ration care (some of quadrant” approach and establishing the the Crisis Standards of Care guidelines), field of Clinical Medical Ethics.[5] However, like weighing a patient's “worth” based on these principles get strained in case of the presence or absence of disabilities.[9] public health emergencies like COVID­19 Even in this pandemic International treaties which require the following: setting priority like the United Nations Convention on the www.rhime.in 113 Rights of Persons with Disabilities and has released COVID guidance prohibiting legislations like Americans with Disabilities discrimination based on disability.[9] In a Act, the Rights of Persons with Disabilities recent article, I proposed a Disability Ethics Act (Section 3.3; India), and Equality Act framework in employing anti­discriminatory (UK) are applicable. approaches to value disabled lives in triage. [11] The Bioethics Group of the Republic of The voices of disabled people are being San Marino has published similar guidance neglected in the response formulated to the but we need the voices of disability ethicists. COVID­19 Pandemic. The Disability­ [9] inclusive Disaster Risk Reduction (DiDRR) Guidelines from the The NoBody Is Disposable Coalition in the explicitly states that if DiDRR is to function, United States is campaigning against people with disabilities and their discrimination in triage. In their open letter organisations would have to be included in to medical professionals, they have an all decision­making that affects them unusual signatory listed among (Section IV, Point 15, page 27).[10] organisations supporting the cause ­ this is However, none of the circulars released by the Doctors with Disabilities: Agents of the Government of India includes disabled Change from India.[12] Society often forgets contributors. Canada stands out in this that disabled people are not always patients regard as perhaps the only country to but they may be health care providers too. establish a COVID19 Disability Advisory There are many doctors and nurses with Group by involving Disabled Peoples disabilities who are working at the frontline Organisation.[9] in this pandemic ­ we need look no further for evidence that the provisions that use of Kirschner, in her commentary on the above life expectancy and “life years” as the basis artwork, laments the medical and bioethics for allocating ventilators are discriminatory. communities for not showing solidarity in The presence in hospitals of providers with disability­inclusive COVID­19 response. disabilities shreds apart the false notion that Amidst growing protest by disability rights we should rely on ‘comorbidities’ to assess groups, the Office of Civil Rights in the US ‘long term survival’.

References 1. National Disaster 3. Beauchamp T, Childress J. 7. Department of Administrative Management Guidelines: Principles of Biomedical Ethics. Reform and Public Grievance. Hospital Safety. A publication of 8th ed. New York, NY: Oxford National Preparedness Survey the National Disaster University Press; 2019. on COVID­19 responses of Management Authority, District Collectors and IAS Government of India. 2016 Feb 4. Page K. The four principles: Officers (2014­18 batches). 2020 [cited 2020 May 19]. Available can they be measured and do Apr 1 [cited 2020 May 19]. from https://ndma.gov.in/images/ they predict ethical decision Available from https:// guidelines/Guidelines­Hospital­ making? BMC Med Ethics. darpg.gov.in/sites/default/files/ Safety.pdf 2012;13:10. COVID­ 19%20Impact%20Feedback%20 2. Emanuel EJ, Persad G, 5. Teven CM, Gottliebhe LJ. The Report.pdf Upshur R, Thome B, Parker M, four­quadrant approach to Glickman A, Zhang C, Boyle C, ethical issues in burn care. AMA 8. Singh S, Cotts KG, Maroof Smith M, Phillips JP. Fair J Ethics. 2018;20(6):595­601. KA, Dhaliwal U, Singh N, Xie T. allocation of scarce medical Disability­inclusive resources in the time of Covid­ 6. Petrini C. Triage in public compassionate care: Disability 19. N Engl J Med. 2020 Mar 23. health emergencies: ethical competencies for an Indian doi: 10.1056/NEJMsb2005114. issues. Intern Emerg Med. Medical Graduate. J Family Med [Epub ahead of print] 2010;5(2):137­44. Prim Care [serial online] 2020 [cited 2020 May 19];9:1719­27. www.rhime.in 114 9. United Nations Human Rights 10. National Disaster 11. Singh S. Disability ethics in Office of the High Commissioner. Management Guidelines on the coronavirus crisis. J Family COVID19 and the Rights of Disability inclusive Disaster Risk Med Prim Care. 2020. Persons with Disabilities. 2020 Reduction. A publication of the [Forthcoming] April 29 [cited 2020 May 19]. National Disaster Management Available from https:// Authority, Government of India. 12. No Body Is Disabled. Open www.un.org/development/desa/ September 2019 [cited 2020 letter to providers and hospitals. disabilities/wp­content/uploads/ May 19]. Available from https:// 2020 [cited 2020 May 19] sites/15/2020/04/COVID­ gidm.gujarat.gov.in/en/ndma­ Available from https:// 19_and_The_Rights_of_Persons guidelines nobodyisdisposable.org/open­ _with_Disabilities.pdf letter/

www.rhime.in 115