Free download from www.hsrcpress.ac.za disability and social change Free download from www.hsrcpress.ac.za disability Free download from www.hsrcpress.ac.za and social change a south african agenda edited by brian watermeyer, leslie swartz, theresa lorenzo, marguerite schneider and mark priestley Free download from www.hsrcpress.ac.za Compiled within the Child, Youth, Family and Social Development Research Programme of the Human Sciences Research Council Published by HSRC Press Private Bag X9182, Cape Town, 8000, South Africa www.hsrcpress.ac.za © 2006 Human Sciences Research Council First published 2006 All rights reserved No part of this book may be reprinted or reproduced or utilised in any form or by any electronic, mechanical, or other means, including photocopying and recording, or in any information storage or retrieval system, without permission in writing from the publishers ISBN 0-7969-2137-7 Typeset by Simon van Gend Cover design by Farm Design Print management by comPress Distributed in Africa by Blue Weaver PO Box 30370, Tokai, Cape Town, 7966, South Africa Tel: +27 (0) 21 701 4477 Fax: +27 (0) 21 701 7302 email: orders@blueweaver.co.za www.oneworldbooks.com Distributed in Europe and the United Kingdom by Eurospan Distribution Services (EDS) Henrietta Street, Covent Garden, London, WC2E 8LU, United Kingdom Tel: +44 (0) 20 7240 0856 Fax: +44 (0) 20 7379 0609 email: orders@edspubs.co.uk www.eurospanonline.com Distributed in North America by Independent Publishers Group (IPG) Order Department, 814 North Franklin Street, Chicago, IL 60610, USA Call toll-free: (800) 888 4741 All other enquiries: +1 (312) 337 0747 Fax: +1 (312) 337 5985 email: frontdesk@ipgbook.com www.ipgbook.com Contents Free download from www.hsrcpress.ac.za List of tables and figures viii Foreword ix Acknowledgements x Acronyms and abbreviations xi Introduction and overview Brian Watermeyer and Leslie Swartz Section I Theoretical approaches to disability Disability and the environment Marguerite Schneider Developing disability studies programmes: the international context Mark Priestley Disability and psychoanalysis Brian Watermeyer 31 Section II Government and societal responses to disability 45 A history of the disability rights movement in South Africa 46 Colleen Howell, Schuaib Chalklen and Thomas Alberts Integrating disability within government: the Office on the Status of Disabled Persons 85 Sebenzile Matsebula, Marguerite Schneider and Brian Watermeyer Establishing the Secretariat for the African Decade of Persons with Disabilities 93 Shuaib Chalklen, Leslie Swartz and Brian Watermeyer Disability and human rights: the South African Human Rights Commission 99 Charlotte Mcclain Nhlapo, Brian Watermeyer and Marguerite Schneider HIV/AIDS and disability: new challenges 108 Leslie Swartz, Marguerite Schneider, and Poul Rohleder 19 ‘How could she possibly manage in court?’ An intervention programme assisting complainants with intellectual disabilities in sexual assault cases in the Western Cape 116 Beverley Dickman, Amanda Roux, Susan Manson, Gillian Douglas and Nokuthula Shabalala 11 Free download from www.hsrcpress.ac.za 10 Language policy and SASL: interpreters in the public service Marion Heap and Helen Morgans Section III Disability and education 148 12 Disability and schooling in South Africa Crain Soudien and Jean Baxen 134 149 13 Disabled students and higher education in South Africa Colleen Howell 164 14 Developing a Disability Studies programme: engaging activism and academia for social change 179 Theresa Lorenzo, Mzolisi ka Toni and Mark Priestley 15 Developing literacy with Deaf adults Meryl Glaser and Theresa Lorenzo 192 Section IV Disability, poverty, and social security 206 16 Disability, poverty, gender and race 207 Tony Emmett 17 Tough choices: disability and social security in South Africa Leslie Swartz and Marguerite Schneider 18 234 Issues in disability assessment 245 Ruth Watson, Marion Fourie and Joan Andrews Section V Disability and service provision 260 19 Physically disabled women and discrimination in reproductive health care: psychoanalytic reflections 261 Nokwanele Mgwili and Brian Watermeyer 20 Community-based rehabilitation: new challenges 273 Sarah Rule, Theresa Lorenzo and Milani Wolmarans 21 Psychiatric disability and social change: an insider perspective Siyabulela K and Madeleine Duncan 291 22 Parents and therapists: dilemmas in partnership Judy Mckenzie and Bronwen Müller 311 Section VI Disability and human spaces 324 23 Disability and universal access: observations on housing from the spatial and social periphery 325 Justine Coulson, Mark Napier and Gertrude Matsebe Free download from www.hsrcpress.ac.za 24 Disability and homelessness: a personal journey from the margins to the centre and back 350 Gubela Mji 25 Entrepreneurship, employment and skills: Ari Seirlis in conversation 361 Ari Seirlis and Leslie Swartz 26 Media and disability Jane Stadler 27 ‘Ag shame’ and superheroes: stereotype and the signification of disability Kathleen McDougall List of contributors Index 404 401 373 387 D I S A B I L I T Y A N D S O C I A L C H A N G E : A S O U T H A F R I C A N AG E N DA List of tables and figures Tables 11.1 12.1 12.2 Free download from www.hsrcpress.ac.za 16.1 16.2 16.3 17.1 17.2 18.1 22.1 23.1 23.2 23.3 SASL interpreters in South Africa, by category, number and by ratio of interpreters to SASL users 140 Distribution of disabled persons per category, per province 150 Distribution of special schools and learners in special schools, per province 151 Estimates of national disability prevalence rates 1995–1999 209 Percentages of people with and without disabilities receiving grants 223 Distribution of disability among the major population groups 225 Number of beneficiaries of disability grants, by province 237 Annual growth in disability grant beneficiary numbers, by percentage 238 Categories of productivity 257 The public/private divide in South African health, mid-1999 312 Case study characteristics: communities at a glance 329 Types of first impairment compared to national average (2001 Census) 330 Dwelling types occupied by sample 342 Figures 16.1 16.2 16.3 20.1 23.1 23.2 23.3 23.4 23.5 23.6 23.7 23.8 viii Monthly income of people with and without disabilities, 1996 222 Personal incomes of disabled people, by gender 224 Percentages of population with and without disabilities, by level of education 226 CBR partnership programme: an implementation model 285 Settlements around Tshwane 328 Inaccessible toilets in RDP houses 332 RDP and ESCAP toilet plans 333 Lack of privacy: a toilet in a small house 333 Drawing by Elias Mahoro showing informal squat toilets – the only option 334 Poor roads are a barrier 337 Drawing by Amos Baloyi showing how muddy uneven paths prevent independent movement 338 Saulsville Railway Station: no access 339 F O R E WO R D Free download from www.hsrcpress.ac.za Foreword In the world today, disabled people are lobbying the United Nations to advance the rights of disabled people by adopting the Disability Convention In Africa, disabled people and their governments are implementing the African Decade of Disabled People (2000–2009) to ensure improvement in, and equalisation of, opportunities for disabled people In South Africa, in 2006 we celebrate the tenth anniversary of the adoption of our Constitution, a document we can all be proud of and that promotes the rights of all South Africans Unlike many other such documents, our Constitution specifically mentions the right of disabled people to equality As we advance our struggle on all these fronts, it is therefore fitting that this book, Disability and social change: A South African agenda, should appear, representing one more step towards the realisation of rights for all South Africans In 1997, the then Deputy President of South Africa, Thabo Mbeki signed the White Paper on the Integrated National Disability Strategy – the INDS The INDS placed the issue of disability firmly in the centre of concerns around what it takes to make a society that is accessible and provides equal opportunities for all The INDS called for research to promote the rights and participation of disabled people in our society This major book, supported by the Disability Movement in South Africa, and with its many authors and wide range of topics, answers that call It also asks all South Africans to continue thinking about and researching the rights of disabled people, to continue to build a more inclusive society, and to take on board the slogan of Disabled People South Africa, ‘Nothing about us, without us!’ The book makes it clear how far we have come since the INDS – it is very unlikely that such a document would have been published even ten years ago It also makes it clear that we still have a long way to go, in relation to the challenges of unemployment, and in making transport and social services truly accessible The editors and authors of this book come from a variety of sectors in South Africa, and are diverse with respect to disability, gender, race, and class Collectively they issue us with a powerful challenge – to intensify our efforts to make the provisions of our Constitution real for all South Africans Read this book – it may well spur you on to make your own best efforts to address the disability agenda The best compliment you could pay to the authors of this remarkable volume would be to make your own contribution to enhancing the rights and opportunities of disabled people in South Africa I call on all members of the Disability Movement to engage in this disability and social agenda Lewis Nzimande, MP and National Chairperson, Disabled People South Africa 1999 to 2006 ix D I S A B I L I T Y A N D S O C I A L C H A N G E : A S O U T H A F R I C A N AG E N DA Acknowledgements The contributors to this volume are drawn from a broad cross-section of the diverse and complex nation that is South Africa As editors, we have attempted to bring together a range of voices within our country’s disability movement, and we owe a great debt of gratitude to all the authors, for enriching our work with their experiences, insights and images This has been a long process and a difficult one; we thank all the authors for both their generosity and their patience Free download from www.hsrcpress.ac.za The Human Sciences Research Council (HSRC) has, over the past four years, shown substantial commitment to researching disability The publication of this book, thus, is but one of a range of disability research initiatives in which the HSRC is engaged, and for which the organisation deserves our recognition and thanks From all at the HSRC Press we have had particular support In the broader HSRC, Professor Linda Richter made possible the establishment of a research focus that has lead to this book and to a number of other outputs in the field of disability research Stellenbosch University generously allowed Leslie Swartz a secondment to the HSRC very soon after he had arrived at the university, and this provided him with the opportunity formally to establish disability work at the HSRC The Disability Studies Programme at the University of Cape Town, in which a number of the editors and contributors have been involved, has two important relationships, both of which are reflected in this publication The British Council facilitated and funded a link between the Disability Studies Programme and the Centre for Disability Studies at Leeds University This link has done much to develop disability work in South Africa The linkage has been supported by the participation of Disabled People South Africa (DPSA) and particularly by the consistent and helpful support of Mzolisi ka Toni, who is not only a contributor to this book, but also a key person in ensuring that it has come into being Through the arduous process of writing and editing, Brian Watermeyer and the editorial team were ably assisted by Ann Turner Hayley MacGregor was a great help and support early on in the process Thomas Alberts deserves very special mention – without his considerable editing skills, and his rare mix of commitment, enthusiasm, hard work, and great humour under pressure, this book would have been of far less value Many of the chapters in this book refer to the daily lives and the ongoing struggles for equality, dignity, and access for many disabled South Africans This book is neither comprehensive nor the last word We hope, though, that what we have done provides some recognition, from the research and academic sectors, of the importance of your lives – not only in terms of disability but also for all who are serious about democracy in South Africa The editors x D I S A B I L I T Y A N D S O C I A L C H A N G E : A S O U T H A F R I C A N AG E N DA Free download from www.hsrcpress.ac.za Congress of Disabled People (4th, 1984), 53 constructivist approach to learning case histories, 314–15 consumer association (of disabled people), 50 Convention on the Elimination of Discrimination Against Women (CEDAW), 89 Convention on the Rights of the Child (CRC), 89 Convention on the Rights of Disabled Persons, 89, 97 Co-ordinating Committee on the Care of the Disabled, 54, 63 Council for Scientific and Industrial Research (CSIR) see Guidelines for Human Settlement Planning and Design (CSIR, 2000) counselling and disabled people, 25 crime in informal settlements, 332, 333 cultural citizenship, 378 cultural model of disability in media, 373 sense of community, 375 DeafBlind South Africa (1996), 78 Deaf Community of Cape Town (DCCT) concern for neglect of black and coloureds people, 143 see also Adult Deaf Literacy project Deaf Federation of Africa see African Federation of the Deaf Deaf Federation of South Africa (DeafSA), 72, 139, 143 leadership of Deaf people, 143 Deaf (from birth) persons access to information, 76 access to television programmes, 393 ‘Bilingual-Bicultural’ approach to literacy, 194–5, 196, 198 English as second/third language, 198 literacy, 192–3, 194 second language skills, 195 see also captioning; South African Sign Language (SASL) deaf (post-birth) people, 397 406 technology to improve media accessibility, 383–4 delivery rooms (maternity) case history, 267 staff attitudes to disabled women, 266–8 Denmark funding support for DPSA MPDP programme, 69 Department of Education, South Africa Education White Paper (EWP3, 1997): 171, 172 Education White Paper (EWP6, 2001): 75, 149–52 & tab., 159–61, 171, 173, 181, 279, 316 National Plan for Higher Education (NPHE, 2001), 164, 171, 172–3 Department of Health, South Africa financial resources constraints, 304 National Rehabilitation Policy (2000), 287 Department of Housing, South Africa housing modification grant, 331, 335 housing subsidy, 332 subsidy information, dissemination of, 335–6 Department of Social Development, South Africa assessment panels, 238–9, 250 assessment tools/procedures, 249–8 & tab Committee of Inquiry into a Comprehensive Social Security System, 75 disability grants, 236–8 & tab., 242–3 grants, dissemination of information on, 251 see also assessment process for disability developing countries collective action response, 358 and disabled women, 218–20 mortality rates of disabled people, 218–19, 229 prejudicial conditions to disabled people, 218 unemployment of disabled people, 212 DFID (Department for International Development) see United Kingdom Department for International Development (DFID) Free download from www.hsrcpress.ac.za INDEX Diagnostic and Statistical Manual of Mental Disorders (DSM III), 300–1 Diagnostic and Statistical Manual of Mental Disorders (DSM-IV) Axis V, the Global Assessment of Functioning (GAF) scale, 300–1 disability associated additional costs, 214 associated environmental/social conditions, 210 attitudinal/physical barriers, 234–6, 374 causes, 210–11 culture, 375, 380 definitions, 21, 154–5, 208 as deviant, 393 discourses, 373 ‘enfreakment’, 398 and illness, 207 ‘individual limitation’, 21 and poverty, 208–9, 223 (see also poverty factor) ‘signifies a lack’, 398 social interpretation, 21 as ‘undesirable/unacceptable’ condition, 316 Disability Desks, 66 provincial, 68, 181 Disability Employment Concerns (DEC), 74 disability grants accessibility, 75, 237–8, 250 see also social security disability NGOs, 74–5 Disability Rights Charter, 63, 67, 100 campaign, 56–8 Disability & Society (1986- ), 27 Disability Studies (academic discipline), 20, 23, 26, 41, 179 individual model of disability, 22 northern hemisphere, 20–1, 24 research initiatives, 3, 180, 189 social model of disability, 22, 24 southern Africa, 24 United States, 24 see also University of Cape Town Disability Studies Forum, 28 disabled children access to schooling, 106, 165 access to social services, 80, 311–12 access to therapy, 311–12 education, 149, 152–4, 226 gender inequalities, 215 racial inequalities, 227 as ‘government’s children’, 319, 350 impact on mothers/caregivers, 207, 208, 214, 319 learners in special schools, 151 tab US social assistance benefits, inequalities of, 216 see also therapy Disabled Children’s Action Group (DICAG, 1993), 56, 60–1, 72, 77, 181 assessment of rural areas, 227–8 link with OSDP, 86 disabled homeless people, 351–9 disabled learners access to higher education, 165–8 disabled men in developing countries, 218–19 housing benefits/grants, 342–4 disabled older people, 230 disabled people affirmation of experiences/values/identity, 374–5 ‘Ag shame’ syndrome, 387–90 ‘cannot speak for themselves’ attitude, 397–8 CBR programmes and empowerment, 275 consultation, necessity for, 327 as dependent and isolated, 398 depicted as innocents needing sympathy, 389–90 disempowerment, 130, 316–17, 374 distribution, 150 tab diversity, 396–7 dominance of medical ‘discourse’, 25, 166, 168, 170, 325, 394–5 education and literacy, 212–13 empowerment initiatives, 275, 286 equalisation of opportunities, 304–5 group identity, 380 hierarchy of needs, 365 407 D I S A B I L I T Y A N D S O C I A L C H A N G E : A S O U T H A F R I C A N AG E N DA Free download from www.hsrcpress.ac.za human rights and needs, 57–8, 106 income levels, 212, 222, & tab., 223 independence, 14 integration in government departments, 89, 90 isolation, 14 job categorisation by employers, 370 liberation struggles, 25, 47 national prevalence rates, 209 & tab oppression/disadvantage, 23 perceptions of able-bodied people, 374, 397–8 represent own experience, not qualified to, 394–5, 397 responsibility to adapt to environment, 326 ‘right to employment’ attitude, 371 ‘secondary handicap’ phenomenon, 394 self-advocacy culture, 106 sexuality and reproduction rights, 268–71 social integration, 279 social security grant assessments, 249–58 stigma, 110–11 see also stereotypes ‘umbrella of dependency’, 389 vulnerable groups, 101 Disabled Peoples International (DPI), 49, 53, 64, 275 disabled people’s organisations (DPOs), 275, 282, 288 Disabled People South Africa (DPSA), 3, 48, 54, 72, 99, 181 anti-apartheid policy, 52–4 Code of Good Practice on Disability, 74 collaboration with occupational therapists, 181–2 community-based rehabilitation (CBR), 273 contract with OSDP (2002), 81 contradictory position vis-a-vis government, 81 cross-disability strategy, 53 Economic Empowerment Framework Programme (EEP), 73–4 government grant, 54–5 human rights issues, 62–3, 358 interaction with ANC, 56, 62–3 408 leadership exodus to public bodies, 63, 71, 87, 90, 365 legal/para-legal asistance, 57 link with OSDP, 86 Member and Policy Development Programme (MPDP), 68 membership growth, 56, 58 representatives in legislative bodies, 70, 71 research project, 47 self-help organisations, 53–4 training, 58 Women’s Programme (see Disabled Women’s Development Programme) Disabled People South Africa (DPSA), Mpumulanga CBR Disability Support Service programme, 281–2 CBR partnership programme, 273, 284, 285 & tab disabled people as CBR consultants, 282 Implementation of Community Based Disability Support services (partnership agreement), 280 intersectoral collaboration, 285 disabled women, 61, 76, 207 abuse victims, 213 in developing countries, 218–19 disadvantages experienced, 215, 218–20 housing benefits/grants, 342–4 mortality rates, 218, 230 sexual and reproduction rights, 268–71 staff attitudes at reproductive health clinics, 263–8 Disabled Women’s Development Programme, 56, 61, 76, 261 Disabled Youth South Africa (DYSA), 77 disablist idealogy, 270–1 discourses (terminology), 373 discrimination, 46 against disabled, 1–2, 374 national policies to reduce, 12, 78 Discrimination Watch Programme, 56 Dlungwana, Zanele, 70 Down Syndrome Forum of South Africa (DSFSA), 72 INDEX influence on disability, 8–11, 14–15, 326 informal settlements, 336–8 & illus limitations, 25 role as facilitator/barrier, 9–11 epilepsy, 396 ‘invisibility’, 394 Eastern Cape Provincial Government equity legislation disability grants, 75 attitudes of employers/employees, 364 economic empowerment, 73–4, 80 see also Acts (South African); South Africa education Department of Education; Education barriers encountered by disabled, 15 White Papers, National Plan for Higher constructivist approach to learning, 314–15 Education equal opportunities, 75, 164 mainstreaming/inclusive approach, 152, 235 eugenics, 40, 156–7, 270 exclusion/inclusion discourses physical accessibility, 393 see inclusion/exclusion discourses schools for the Deaf, 141–2, 193 special schools distribution, 151 & tab Education, Training and Development Practices families impact of disabled person, 213–14, 217 Sector Training Authority (ETDP SETA) reduced income/increased expenses, 214, Learnership programme, 197, 305, 366 217–18 education level, 15–16 Family Planning Clinics (FPCs) and risk of disablement, 213 staff attitudes to disabled women, 262–5 Education White Papers (No and 6) see South Africa Department of Education functioning levels, 10–12 Education White Paper 3, Education Gauteng Provincial Government, 344 White Paper gender, 1, 207 emotional responses, 32, 39 and disability, 215, 218–20 employment equity, 74, 235, 364–5 and poverty, 223 Enabled Environments project, 326–47 Gender Commission, 71, 76 case study communities, 329 Gender, Disability and Child (GDC) characteristics of area, 329 tab framework, 89 community facilitators, 329 Global Assessment of Functioning (GAF) scale, participatory action research (PAR) Axis V, 301 approach, 327 Guidelines for Human Settlement Planning and sample group, 330–1 & tab Design (CSIR, 2000), 337–8, 345 types of impairment, 330 & tab entrepreneurship, 361–2, 367–9 Habitat Agenda, 325 capital, 367–8 Handicap: Revue de Sciences Humaines et as subcontractors, 369 Sociales, 28 environment, 9–11 Harare Declaration on Legislation for cause of impairments, 210 Equalisation of Opportunities for Disabled changing social attitudes, 305–7 People (1991), 65 disabling, 394–5 health and welfare system (pre-1994), 49–50 factor in social security grant assessment, health conditions, 10 246–7, 252, 253, 254 and poverty, 210 home, 331–6 & illus Free download from www.hsrcpress.ac.za du Toit, Mike, 49, 53, 55, 56, 62, 73 The dynamics of disability: Measuring and monitoring disability for social security programs (US, 2002), 240 409 D I S A B I L I T Y A N D S O C I A L C H A N G E : A S O U T H A F R I C A N AG E N DA Free download from www.hsrcpress.ac.za health professionals attitudes to reproductive health of disabled women, 263–8 dominance in disability organisations, 49 Health Professions Council of SA Occupational Therapy Board CBR training, 288 CRF registration, 276–7 health services accessibility, 80, 210, 312 medical-model approach to rehabilitation, 273–4 (see also medical model) public/private divide, 312 tab see also reproductive health clinics; therapy hearing loss, 210 environmental interventions, 13 higher education institutions academic-development initiatives, 168–9 campus inaccessibility, 170 eligibility/ineligibility of disabled, 165–8 learning-support systems for disabled, 168–9, 173–4 recognition of prior learning, 185–6 stressors suffered by disabled, 170, 175 teaching and learning barriers, 173, 175 HIV/AIDS disability grants, 111 disabled caregivers, 112 impairments, 112 risk factors for disabled, 80, 109, 211 HIV/AIDS education programmes accessibility to disabled people, 76, 80, 109, 129–30, 283 homeless people, 351–5 see also disabled homeless people homicidal feelings, 38 housing accessible low-cost, 76, 80 accessing government subsidies/grants, 341–5 & tab formal low-cost, 326–7, 331–6 & illus sanitation access problems, 332–4 & illus security, 332 How’s Your News programme, 395 410 HSRC/SABC Education’s study of disability and media in SA, 387–8, 395 human rights, 66 education programmes, 102 individual as basic unit, 358 and language policy, 135–7 Human Rights Commission see South African Human Rights Commission (SAHRC) ideal body concept, 36, 157–8, 375, 393 versus ‘marked body’, 155–7 idealisation, 37–8 impairments, 1, 327 definition, 21, 208 preventable, 210 Inclusion Africa, 94, 95 inclusion/exclusion discourses, 158–60 community-based rehabilitation (CBR), 278–80 impact on opportunities, 214 integration on normative principles, 158–9 media programmes, 378, 381–2 and media technologies, 383 psychiatrically disabled people, 304 service delivery of therapists, 316–17, 319 Indian government disability rights measures, 325 individual model of disability, 25, 38, 264, 305–6 Individual Scale for General Scholastic Aptitude (ISGSA), 124 information and communication technologies (ICTs), 382–3 information dissemination CBR programmes, 275, 282 innocent damage narrative, 389–90 Institute of Urban Primary Health-care (IUPHC) CBR training programme, 276 institutionalisation, 40, 303, 394–5 insurance industry assessment for disability benefits, 247–9 Integrated National Disability Strategy (INDS, 1997), 8, 65, 89, 165, 180, 181, 234, 281, 308, 336 Free download from www.hsrcpress.ac.za INDEX community-based rehabilitation, 284 establishment, 67–9, 85 human rights issues, 358 implementation issues, 68, 79, 88 media strategies, 382, 385 medical-based rehabilitation, 315 poverty/disability link, 209 & tab., 357 transport accessibility, 104 intellectually disabled (ID) people ability to take oath in court, 126 assessment of intellectual functioning, 124 case histories, 314–15 disempowerment, 130 interview distortion due to acquiescence/ suggestibility, 125–7 ‘invisibility’, 394 involuntary sterilisation, 270 post-traumatic stress disorder, 130 sexual assault cases, 116–17, 127–8 Sexual Assault Victim Empowerment Programme (SAVE), 118 sexual decision-making capacity, 128–30, 265 Interdepartmental Co-ordinating Committee on Disability (ICCD), 54, 63, 88 International Classification of Functioning, Disability and Health (ICF), 8, 245, 253, 301–2 International Classification of Impairment, Disability and Handicap (ICIDH), 21 International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities, 89 International Labour Organisation (ILO) community-based rehabilitation, 274 International Year of Disabled People (1981), 21, 49, 64 internet, 382–4 Jagoe, Kathy, 51, 55 Joint Monitoring Committee on Improvement of Quality of Life and Status of Children, Youth and Disabled Persons (1999), 70 Journal of Disability Policy Studies, 28 Journal of Disability Research, 28 Ka Toni, Mzolisi, 70–1, 73, 77, 80 Khompela, Butana, 70 Lagadien, Fadila, 71 language acquisition, 137 oppression of, 300 see also South African Sign Language (SASL) Lawyers for Human Rights (LHR) Disability Rights Unit, 57, 100 leadership of civil disability organisations, 80 exodus to government organisations (post1994), 71, 87 Linders, Petronella, 71 lip-reading, 193 local government, 70 Mahlati, Vuyo, 60 mainstreaming, 152–4 and media, 373 Malinga, Joshua, 53 malnutrition, 210 Mandela, Nelson, 46, 56 ‘marked body’ concept, 155–7 Masakhona Raedani, Flora, 70 Masutha, Michael, 57, 70, 80 Mavuso, Friday (Pindi), 50, 55, 58, 73 Mbeki, Thabo, 46, 66, 68 McClain Nhlapo, Charlotte, 71 media and disability, 373 lack of awareness, 375 language used to describe disability, 373 measures to improve accessibility, 383–4 policies, 385 ‘positive’ portrayals denigrating, 392 prejudicial representations of disabled people, 303, 376, 388–9 technologies, 382–5 ‘umbrella of dependency’, 389 medical aids, 321–2 medical model, 325 disability defined as a disease, 307, 393, 394–5 411 D I S A B I L I T Y A N D S O C I A L C H A N G E : A S O U T H A F R I C A N AG E N DA Free download from www.hsrcpress.ac.za emphasis on individual deficit/impairment, 25, 166, 168, 300, 302, 357, 393 in media, 373, 385 and psychiatric disability, 302 and rehabilitation, 2, 273–4, 313–16 on rehabilitation professionals’ training, 321–2 understanding of body/mind split, 394 ‘mental age’ concept, 124 mental health problems see psychiatric disability Moss, Maxwell, 70 mothers/caregivers’ needs, 319 see also disabled women; women Mpumulanga Province Department of Health CBR Disability Support Service programme, 281–2 CBR partnership programme, 273, 280, 284, 285 tab intersectoral collaboration, 285 see also Disabled People South Africa (DPSA), Mpumalanga Mulligan, Donovan, 381 mythologising process, 398 Mzondeki, Joseph, 70 ‘narcissistic culture’, 36 National Building Regulations see under South African Bureau of Standards National Co-ordinating Committee on Disability (NCCD), 64, 67, 85–6 South African Disability Institute, 72 National Council for Persons with Physical Disabilities South Africa (NCPPDSA), 72 National Economic Development and Labour Council (NEDLAC), 69, 71 National Forum (NF), 52 National Lottery funding for disability projects, 74–5 National Plan for Higher Education see South Africa Department of Education National Plan for Higher Education National Plan of Action for Children, 77 national policies 412 environmental considerations, 13–14 National Policy Framework on Women’s Empowerment and Gender Equality, 89 National Working Committee (NWC), 71–2 National Year of the Disabled (1986), 54–5, 64 New Economic Partnership for African Development (Nepad), 97 Newhoudt Druchen, Wilma, 70 Ngcobo, Beatrice, 71 Ngolo, Thomas, 97 Nkeli, Jerry, 57, 58, 71, 80 Nkosi, Muzi, 77 non-governmental service providing organisations, 63 Nzimande, Louis, 70 occupational therapists collaboration with DPSA, 181–2 Occupational Therapy Board see Health Professions Council of SA Occupational Therapy Board October Household Survey (OHS, 1999), 221 fig.–226 fig oppression, 1, 22–3, 31 of language (labels), 300 oralism, 138, 142, 193 Office on the Status of Diabled Persons (OSDP) see South Africa Presidency Office on the Status of Disabled Persons ‘othering’, 33–4, 39, 154 Pahad, Essop, 81, 86 Pan African Federation of the Disabled (PAFOD), 65, 94, 181 Pan South African Language Board (PanSALB), 136 parents’ perspectives, 311–12 consumer-client relationship or partnership, 319–20 disempowerment by professionals, 318 ‘learnt helplessness’, 314 power dynamics of relationship with therapists, 317–19 support groups, 322 Parkin, Terence, 393–4 Free download from www.hsrcpress.ac.za INDEX parking bay provision, 76 paternalism, 307 peer counselling services, 281 perfection, ideal of, 36, 393 see also ideal body concept personal assistance as environmental factor, 15 personal level functioning, 11 physical level functioning, 10–11 pity, 269–70 dichotomy of super hero, 387 political perspective and psychiatric disability, 302 poverty factor, 81, 96, 207 and disability risk, 209–10 & tab., 211–14, 303–4 ‘feminisation of poverty’, 207, 218 in social security grant assessments, 247 South African data for disability/poverty link, 221–3 & tab prejudice, 305, 374, 376 prejudicial conditions (to disabilities) in developing countries, 218 prisons, 105 Project Literacy, 197 projection, 39 process, 34–5 psychiatric disabilities, 291, 307 definition, 300, 302–3 environmental interventions, 13 impact on individuals, 302–5 marginalisation, 292, 303–4 oppression of language, 300 Psychiatric Users Africa, 94, 95 psychoanalytic model, 31, 41, 270 psychology and disabled people, 25, 300–1 unconscious feelings, 35, 39–40 public health sector see health services Public Service Announcements (PSAs) and disability, 373–4 information campaigns, 380 public spaces, access to, 395 public transport, 80, 235, 336, 363–5 airline prejudice, 103–4 cost factor, 312 minibus-taxis, 277, 340 railway stations, 339 road transport, 76, 340–1 Quadriplegic Association of South Africa (QASA), 72, 361 Amasondo Esibindi, 367 race factor, 1, 16, 207 and poverty/disability links, 220–1, 224–5 racism, 34, 42 railway stations, 339 Ramushu, Ngwanakopi, 71 Rantho, Maria, 51, 63, 66, 68–9, 70–71 rationalisation (of motivations), 40, 270–1 Reconstruction and Development Programme (RDP), 66, 181 access problems of disabled to toilets in RDP housing, 332–4 & illus Reeve, Christopher, 390–1 REHAB, East London, 320 rehabilitation broad enabling process, 287 professional training curricula, 321 services, 76, 284 Rehabilitation International (RI), 49 representatives in public bodies support from DPSA, 71–2 reproductive health clinics discriminatory attitudes towards disabled women, 261–8 ‘responses’ (term), 41 Review of Disability Studies, 28 rights discourse, 159–60 risk factors, 211 roads and pavements, 337–8 & illus Rowland, William, 3, 53, 54–5, 60, 63, 65, 80 Rural Disability Action Group (RURACT), 56, 59–60, 181, 289 sadism, 270 Sait, Washeila, 60, 77 sanitation 413 D I S A B I L I T Y A N D S O C I A L C H A N G E : A S O U T H A F R I C A N AG E N DA Free download from www.hsrcpress.ac.za access problems for disabled, 332–4 & illus lack of, 210 Scent of a Woman, 37 schools for the Deaf, 142 ‘secondary handicap’ phenomenon, 394 Sector Education and Training Authorities (SETAs), 195, 305, 366 segregation, 23, 40 Seirlis, Ari, 361–71 Self-Help Association of Paraplegics in Soweto (SHAP), 50 self-representation principle, 70, 71, 78, 81 and media, 373, 380–1, 385 disability sector representatives, 71–2 services inappropriate provision/measures, 327 role of environmental factors, 14–15 sexual assault, 116–17 sexual assault cases (ID complainants) CMH Assessment process, 122–5 psychologist’s role, 122–30 social worker’s assistance, 123–5 Sexual Assault Victim Empowerment programme (SAVE), 118–20 signed languages, 138 Sign Language see South African Sign Language (SASL) single-parent families, 217–18 Siyazama Parents’ Society for Disabled Children (1991), 60 skills development, 365, 369 social change attitude to difference, 305–6 and ubuntu philosophy, 306–7 social constructionist view, 33, 374 social exclusion, 304 social model of disability, 264, 274, 306, 357 and assessment process, 239–41, 245–6 as human rights issue, 2–3, 22, 24–5, 80, 234–6 in media, 373 oppression of language, 300 ‘perfect administration ‘, 242 and prejudice, 305, 374 SA national government measures, 325 414 social oppression see oppression social pathology narrative model, 389 social security, 80, 213–14 care dependency grants, 249 Committee of Inquiry into a Comprehensive Social Security System, 75 disability grants, 230, 236, 249 assessment for grants, 239–43, 249–58 impact of environment/poverty on grants, 14–15, 249–50 role in alleviating poverty, 222–3 & tab social services design by/for disabled people, 40 social structures as limiting factor, 25, 374, 393 societal level functioning, 12 Society for Disability Studies (SDS) mission statement, 24 Souchon, Dominique, 72 South Africa Interdepartmental Co-ordinating Committee on Disability (ICCD), 54, 63, 88 Public Service Commission, 71 South Africa Office of the Presidency Office on the Rights of the Child (ORC), 89 Office on the Status of Disabled Persons (OSDP), 47, 66, 67, 85, 90, 181, 182, 236, 247 cluster system for government departments, 88–9 contract with DPSA (2002), 81 departmental indicators, 88 Inter Provincial Forum (IPF), 88 mandate, 85–6 and Mpumulanga CBR programme, 286 Office on the Status of Women (OSW), 89 South Africa Parliament Joint Monitoring Committee on Improvement of Quality of Life and Status of Children, Youth and Disabled Persons, 70, 76 South African Broadcasting Commission (SABC) programming and disability, 373–4 Free download from www.hsrcpress.ac.za INDEX inclusion in mainstream serial dramas, 379 Let’s Meet educational show, 376–8 marginalisation/mainstreaming in programmes, 378 measures to improve accessibility, 383–4 proportional representation of groups, 376, 378–9 sign language incorporation, 376 South African Bureau of Standards Code of Practice on Accessibility of Buildings to Disabled People (SABS 0246, 1993), 345 National Building Regulations, Section S (1986), 345, 363–4 South African Disability Institute (SADI), 72 South African Federal Council on Disability (SAFCD), 63, 65, 72, 85–6 affiliated organisations, 72–3 Development Fund, 55 equal opportunities legislation symposium (1991), 65 leadership exodus problems, 87, 90 relationship with OSDP, 86–7 and UCT disabilities studies programme, 183 South African Federation for Mental Health (SAFMH), 73 South African Foundation of Cheshire Homes, 73 South African Human Rights Commission (SAHRC), 94, 95, 283 built environment legislation review (2002), 345 case histories, 103–6 community outreach/education, 102 mandate, 99 role, 100–3, 106 Towards a barrier-free society (2000), 234 South African National Council for the Aged (SANCA), 73 South African National Council for the Blind (SANCB) affiliated to SAFCD, 72 link with OSDP, 86 South African National Council for the Deaf (SANCD, later DeafSA) control by hearing/professionals, 143 link with OSDP, 86 South African National Epilepsy League (SANEL), 73 South African Police Service (SAPS) communication regarding cases, 122 educational programmes, 122 sexual assault cases, 117–20 South African Sign Language (SASL), 69, 134 dialects, 142–3 incorporation in SABC programmes, 376–8 independent language with own grammar, 194–5 as medium of instruction in schools, 194 official language policy and practice, 144 professional interpreter service, 135, 138–41 & tab., 144 relay interpreters, 140–1 South African Students’ Organisation (SASO), 51 South African Youth Commission, 71 Southern African Federation of the Disabled (SAFOD), 65, 189 Soweto mass demonstration (1976), 51 special schools distribution, 151 tab identifying children/youth out of school, 279–80 inclusive education, 279–80 spinal cord injury, 390–1 impact of home environment, 12–13 splitting, unconscious, 37 Statistics South Africa, 222–6 fig stereotypes homogeneity of disabled, assumption of, 396–7 in media, 303, 376, 387– 8, 395, 398–9 sterilisation as contraceptive means, 157, 270–1 stigma, 229, 291, 302–3, 374 HIV and disabled people, 110–11 unusual behaviour, 300, 303 student uprisings (1976), 51–2 super hero narrative, 392–4 dichotomy to pity (non-entity), 387 Swedish International Development Aid (SIDA), 88 415 D I S A B I L I T Y A N D S O C I A L C H A N G E : A S O U T H A F R I C A N AG E N DA Free download from www.hsrcpress.ac.za taxi operators and disabled passengers, 364–5 technological developments, 383 tender procedures, 371 terminology, 302 therapists’ perspective, 311 as consultants to educators, 316 consumer-client relationship/or partnership, 319–20 therapy case histories, 314–15, 320 collaboration between parent/child/ therapist, 319–20 costs, 311 developmental areas, separation of, 313–14 and disabled people, 25 medical versus social approach, 314–15 parent/therapist relationship, 317 skill acquisition versus cure, 314–15 Thompson, Philip, 72 TM Mbeki Development Trust (1999), 74–5 toilets (for use of disabled people) accessibility in RDP housing, 332 access in informal settlements, 333 in public buildings, 339 tokenism, 378 toxic environments, 211 transport see public transport accessibility Tshabalala, Thulani, 61 Tshwane Municipality (Pretoria area), 326, 328 Ubuntu principle, 306–7 the unconscious, 32, 41 underemployment, 212 unemployment, 212, 303, 308n2 and disability, 225 Union of Physically Impaired Against Segregation (UPIAS), 22 United Democratic Front (1983), 52 United Kingdom Department for International Development (DFID), 207, 210 United Nations Convention on the Rights of the Child (1995), 77 416 Decade of Disabled Persons (1982-1992), 49, 64, 93 Standard Rules on the Equalisation of Opportunities for Persons with Disabilities (1993), 64, 93, 101, 180, 181, 301, 326 World Programme of Action Concerning Disabled Persons (1992)(1982?), 49, 54, 64, 181 United Nations Economic and Social Commission for Asia and the Pacific (ESCAP) guidelines, 325–6 United Nations Education, Scientific and Cultural Organisation (UNESCO) community-based rehabilitation, 274 United States The dynamics of disability: Measuring and monitoring disability for social security programs (2002), 240 gender and disability, 215–17 poverty/gender/race/disability interactions, 215–18, 220–1 Universal Design policy, 17 welfare benefits, 215–17 United States Agency for International Development (USAID), 207 University of Cape Town collaboration on Adult Deaf Literacy project, 196 collaboration with Leeds University, 182–5 Communication Sciences & Disorders Division, 196 Disabilities Studies programme, 181–8 value(s), 155–7, 375 Vineland Adaptive Behaviour Scales, 124 violence causing disablement, 52, 56, 211 in informal settlements, 333 Walloch, Greg, 391 wars vulnerability of disabled, 211 water and sanitation project, 278 Free download from www.hsrcpress.ac.za INDEX Western Cape Education Department (WCED) ABET Directorate placement tools, 197–8 wheelchairs environmental factors, 9–10 as symbol, 396 white disabled people, 16 during apartheid period, 49–50 Willem, Boyce, 70 women caring for disabled children, 207, 208, 214, 319 female-headed households, 218 maternal education and information, 210 women, disabled see disabled women Women’s Programme see Disabled Women’s Development Programme work disability, 216, 240 work environments accidents causing disabling, 211 attitude to disabled employees, 364 World Congress of Educators of the Deaf (Milan, 1880), 193 World Federation of the Deaf (WFD) Regional Secretariat of Eastern and Southern Africa (RSESA), 143 World Health Organization CBR training manual (1989), 274 International Classification of Functioning, Disability and Health (ICF, 2001), 8, 245, 253, 301–2 International Classification of Impairment, Disability and Handicap (ICIDH), 21 World Wide Web Accessibility Initiative, 383–4 Xhosa language Individual Scale for General Scholastic Aptitude (ISGSA) lack of translation, 124 Year of the Disabled (1986), 54–5, 64 youth, disabled, 77 Zimbabwe Disability Discrimination Act (1992), 65 Zimbabwean Movement of Disabled Persons, 53 417 Free download from www.hsrcpress.ac.za Free download from www.hsrcpress.ac.za Free download from www.hsrcpress.ac.za ... Section IV Disability, poverty, and social security 206 16 Disability, poverty, gender and race 207 Tony Emmett 17 Tough choices: disability and social security in South Africa Leslie Swartz and Marguerite... Siyabulela K and Madeleine Duncan 291 22 Parents and therapists: dilemmas in partnership Judy Mckenzie and Bronwen Müller 311 Section VI Disability and human spaces 324 23 Disability and universal... Co-ordinating Committee on Disability International Classification of Fuctioning, Disability and Health International Classification of Impairment, Disability and Handicap intellectual disability White