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Breaking the Silence: Institutional responses to people who use atypical communication strategies , ' Rosemary Crossley Thesis submitted for the Degree of Doctor of Pblosophy, Department of Communication and Language Studies, Faculty of Arts, Victoria University of Technology 1997 STA THESIS 362.196855 CRO 30001005320454 Crossley, Rosemary, 1745- Breaking the silence : institutional responses to people who use atypical Declaration The research in this thesis has not been submitted for a degree at this or any other university. The thesis contains no material that has been published or written by another person except where due reference is made. osemary ross ey y 13 November, 1997 II Contents DECLARATION I CONTENTS II FIGURES AND TABLES V ABSTRACT VI ACKNOWLEDGMENTS VII PROLOGUE I SECTION 1. PLACING COMMUNICATION IMPAIRMENT IN CONTEXT 3 CHAPTER I. SETTING THE SCENE 5 1.1. The construction of disability 9 1.1.1. Pathology, impairment, disability, and handicap 10 1.1.2. Disability and technology 10 1.1.3. Disability and variation 11 1.2. Incidence of communication handicap 13 1.2.1. Hearing loss—prevalence 13 1.2.2. Expressive communication impairment—prevalence 13 1.3. Precision and position 16 1.4. The model of treatment 18 SECTION 2. FROM SIGN TO SPEECH—THE EXPANSION OF COMMUNICATION INTERVENTION FROM THE DEAF TO THE MUTE 20 Difficulties of nomenclature 20 CHAPTER 2. SPEAKING HANDS—RECOGNITION AND TREATMENT OF DEAFNESS 29 2.1. Unsystematic intervention—individual expedients 29 2.2. The Enlightenment and after—establishment of a diagnosis of deafness separate from idiocy 31 2.3. The development of manual communication techniques for the deaf. 36 2.4. The social progress of deafness 39 CHAPTERS. FINDING A VOICE—RECOGNITION AND TREATMENT OF MUTENESS 48 3.1. The care of muteness 48 3.2. Establishment of a diagnosis of severe physical handicap separate from idiocy 53 3.3. The stigma of degeneracy 56 3.4. Unsystematic intervention and individual expedients—introducing non-speech communication techniques 59 Ill 3.5. The social progress of cerebral palsy 63 CHAPTER 4. THE DEVELOPMENT OF NON-SPEECH COMMUNICATION TECHNIQUES 66 4.1. The development of augmentative and alternative communication 66 4.1.1. Unaided communication—Makaton signs 69 4.1.2. Aided communication—communication boards to computers 70 4.2 The professionalisation of non-speech communication 72 4.3. Establishment of a diagnosis of severe communication impairment separate from idiocy^O CHAPTER 5. MUTE = DUMB—SPEECH AND INTELLIGENCE—^THE SPECIAL RELATIONSHIP 85 5.1. "This is Dopey. He don't talk none "—the perception of intelligence in people with severe communication impairments 85 5.2. Assessment of atypical communicators .'. 94 5.3. Intelligence and etiology 102 5.3.1. Down syndrome .^ 103 5.3.2. Persistent Vegetative State 116 CFL\PTER 6. TREATING EXPRESSIVE IMPAIRMENT: CHALLENGING INTELLECTUAL IMPAIRMENT 124 6.1. A very few words—limited communication for people labelled intellectually impaired \25 6.2. Mute does not equal dumb—the development of facilitated communication training... 132 6.3. Unsystematic intervention and individual expedients^dcilitating communication prior to 1986 134 6.4. Facilitated communication post-]986—a new DEAL 145 SECTION 3. INSTITUTIONAL RESPONSES TO ATYPICAL COMMUNICATION STRATEGIES AND THEIR USERS 158 CHAPTER 7. COUNTING PEOPLE, COUNTING COST—STATE RESPONSES TO PEOPLE WITH SEVERE COMMUNICATION IMPAIRMENTS 160 7.1. Conceptualisation, definition, enumeration 161 7.2. Accommodating SCI: Sensory disability 164 7.3. Accommodating SCI: Physical disability 165 7.4. Accommodating SCI: Intellectual disability 169 7.5. Accommodating SCI: Conclusion 170 CHAPTER 8. SILENT WITNESSES—^NON-SPEECH COMMUNICATION AND THE LAW 172 8.1. Early history 173 8.2. English law: deaf-muteness in court. 173 8.3. Severe communication impairment in court 176 8.4. Testimony with augmentative communication 179 8.5. Testimony with facilitated communication 180 CHAPTER 9. MEDICAL, ACADEMIC, AND PROFESSIONAL ATTITUDES TO PEOPLE WITH SEVERE COMMUNICATION IMPAIRMENTS 193 9.1. Professional relationships 194 9.2. Professional perceptions of disability 197 IV 9.3. Professional reactions to disability 202 9.3.1. Segregation 202 9.3.2. Neglect 204 9.3.3. Death-wishing 206 9.3.4. Use as research material 209 9.3.5. Characterisation as animals (or vegetables) 213 9.3.6. Viewed as irremediable 215 9.3.7. Viewed as ineducable 217 9.4. Professional assessment of disability 219 CHAPTER 10 PROTECTING THE BOUNDARIES—PROFESSIONALISM UNDER CHALLENGE 224 10.1. Professional belief systems 224 10.2. Professionalism under challenge 226 10.3. Professional rivalries 235 10.4. Disability creation 241 10.5. The professions and disability: power relations 244 SECTION 4. ACCOUNTS BY THOSE WHO USE ATYPICAL COMMUNICATION STRATEGIES 246 CHAPTER 11. IN THEIR OWN WORDS—EXPERIENCES AND PERCEPTIONS OF PEOPLE WHO USE ATYPICAL COMMUNICATION STRATEGIES 247 11.1. Disempowerment 249 11.2. Segregation and isolation 250 11.3. Individual misconceptions 262 11.4. Individual ignorance 264 11.5. Talking politics 269 11.5. Achieving inclusion 274 CONCLUSION 278 GLOSSARY OF TERMS 283 COMMUNICATION 283 NEURO-MOTOR IMPAIRMENTS 285 SPEECH IMPAIRMENTS 287 HEARING IMPAIRMENTS 289 BIBLIOGRAPHY 290 APPENDICES 313 APPENDIX #1—^DECLARATION ON THE RIGHTS OF DISABLED PERSONS 314 APPENDIX #2—DECLARATION ON THE RIGHTS OF MENTALLY RETARDED PERSONS 318 FIGURES AND TABLES RG. 1 PATHOLOGY/IMPAIRMENT/DISABIUTY/HANDICAP FACING 10 RG. 2 HEARING Loss BY AGE FACING 13 FIG. 3 COMMUNICATION HANDICAP BY DISABILITY AND SEVERITY FAQNG 14 nG.4 SEVERE DisABiuTY FACING 162 TABLE 1 CAUSE OF COMMUNICATION HANDICAP FAQNGIS VI Abstract This study compares the introduction and expansion of non-speech communication for people with receptive impairments with the introduction and expansion of non-speech conununication for people with expressive impairments. It documents the introduction of specific non- speech communication strategies—sign, augmeiitative communication and facilitated communication—and discusses the controversies which have ensued. It examines institutional responses to the use of atypical communication strategies: in particular, it examines the treatment of people with communication impairments by the state and the reaction of the legal and professional establishments to the introduction of new communication techniques. The primary hypothesis guiding the study was that repeating patterns would appear, both in attempts to change the status of different groups and in professional intervention and reaction. The secondary hypothesis was that the group recognised longest—the deaf—would have come closest to achieving acceptance. Both hypotheses were supported to some extent. It is possible to discern repeating pattems both in the introduction of new communication techniques and in attempts by professional groups to control their use; and while people who cannot hear have not yet achieved full acceptance and understanding, they are considerably closer to both than are people with diagnoses of physical or intellectual impairment who cannot speak. VII Acknowledgments This thesis is the culmination of 25 years work with people who cannot talk, each of whom has contributed something to the attitudes and experience which underlie this text—as have my fellow workers, good and bad, and the families I met along the way. As part of my research I conducted a large number of interviews with people with communication impairments and those associated with them. While in the event changes in the plan of the thesis have meant that few of these interviews are quoted from^ directly, all contributed to my knowledge of the area, as did discussions with my colleagues at ISAAC, DEAL and the FC Institute. I thank everyone who gave me their time. Many people out there are dedicated to empowering people without functional speech, and I am grateful for their inspiration and encouragement. Throughout my research I was very fortunate to have the support of an Australian Postgraduate Award. Nonetheless, this document would not exist without the input of my supervisors—Helen Borland, Ron Adams and Michael Hamel-Green. I have been blessed with supervisors who have been both interested and interesting, keeping me to a timetable while allowing me freedom to pursue promising lines of inquiry. Their support, and that of Jane Trewin and other administrative staff in the Faculty of Arts, and the offices of Postgraduate Studies and Information Technology, has been invaluable. Anne McDonald and Chris Borthwick, my housemates, have over the past four years sacrificed much of their lives to this project. Their contributions have been crucial. Thank you, everyone. Rosemary Crossley 13 November 1997 Prologue A journey of a thousand miles starts with one step. The step which led me to research society's responses to people who use atypical communication strategies occurred in 1965. I was an undergraduate and had a holiday job as a teaching assistant at a day centre for people with cerebral palsy. Each Friday morning it was my job to take one of the students to the nearby shops to purchase ingredients for the lunch we would cook together. On this particular day I was wheeling Brett, a teenager with spastic quadriplegia and no speech. Brett had all the paraphernalia of severe disability—callipers, straps, a tacky sheepskin and a bib. As I was wheeling him down the street a middle-aged woman with blue hair and white gloves stopped me. "You must have done something dreadful to have a child like that," she said. The cruelty and stupidity of the remark are obvious, as are some of the other assumptions on which the woman was operating. She assumed that I must be Brett's mother because no-one other than a mother would be seen with such a child. She also assumed that Brett was unaware and uncomprehending. Brett understood everything she said. No-one who knew Brett could doubt his lively intelligence or overlook his wicked sense of humour. Sadly, Brett died before the advent of the communication techniques and technologies which have liberated the language locked inside many others like him since the sixties.