Resource Guide: AIDS and Disability
By Myroslava Tataryn
January 28, 2008
A guide to the articles, reports, publications, newsletters and books that we consider the most comprehensive, informative and interesting resources available, both for experts and for newcomers to the issue of disability and AIDS.
"Pushing Frontiers: Including the Disabled in Service Provision"
By Washington Opiyo and Myroslava Tataryn, Exchange Magazine's Disability Issue, June 2009.
People with disabilities (PWDs) are often excluded from HIV and AIDS education and care initiatives, partly due to the widespread perception that they are asexual. In reality they are just as sexually active as their non-disabled peers. At the same time, however, they are also often at much higher risk of sexual abuse from caregivers, partners and strangers who may see them as defenseless. Even where such abuse is reported, law enforcement officers and others in positions of authority tend to take it lightly.
Gladys Charowa, New Internationalist, issue 384: November 2005.
In the thick of Zimbabwe's current turmoil, women with disabilities face hellish prejudice, hunger and rape. Gladys Charowa bears witness.
"Disability In The Majority World"
Gladys Charowa, New Internationalist,
Issue 384: November 2005.
Charowa discusses sexual violence against women with disabilities in Zimbabwe and touches on disabled women’s particular vulnerability to HIV infection in that country. Charowa is the founder of Disabled Women Support Organization (DWSO) that works towards physically and economically empowering women and girls with disabilities.
Anne Finger, New Internationalist, Issue 234: July 1992.
Why shouldn't disabled people have sex or become parents? Finger examines one of the deepest and most damaging prejudices.
"Difference and Defiance"
Anne Finger, New Internationalist, Issue 234: July 1992.
Finger’s article explores the issue of sexuality and disability, uncovering some of the deepest and most damaging prejudices faced by women with disabilities. Finger identifies as a disabled women, and her book Past Due (1990) documents her experience of childbirth as a disabled woman.
"Sex Talk Silenced"
Elizabeth Chopin, Disability Now, September 2005.
An exploration of the continued systemic exclusion of students with disabilities from sexual health education at schools in the United Kingdom.
"Disability and HIV/AIDS in sub-Saharan Africa: Barriers to Prevention" (PDF, 281 KB)
Helen Silberger, Masters Thesis, 2006.
This paper investigates the disconnect between HIV/AIDS prevention programming available generally, and what is made available to persons with disabilities. The author argues that current HIV prevention efforts in sub-Saharan Africa, such as condom promotion and HIV testing, have achieved limited success in abating the HIV/AIDS crisis. Programs have often failed to address underlying issues, such as poverty and discrimination against women, which place certain vulnerable groups at risk of HIV. In that same vein, the paper also makes the case for increasing awareness of disability issues, especially by promoting disability rights.
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"World Report on Disability"
World Health Organization and The World Bank, 2011
This report, the first of its kind, provides an overview of the challenges faced by persons with disabilities and offers evidence of the best approaches to overcoming those challenges. The report estimates that over a billion people, 15% of the world population, have a disability.
"HIV, Disability and Human Rights: Opportunities Offered by the United Nations Convention on the Rights of Persons with Disabilities: A Discussion Paper" (PDF, 117 KB)
Canadian HIV/AIDS Legal Network, Canadian Working Group on HIV and Rehabilitation and Interagency Coalition on AIDS and Development, March 2008
This paper provides background information and explores different perspectives on the potential value, opportunities and challenges of recognizing HIV as a disability under the law, both nationally and through an explicit interpretation of the Convention on the Rights of Persons with Disabilities. This paper has been developed to promote discussion among AIDS, disability and human rights advocates of potential strategies for collaboration.
"HIV/AIDS and Disability: Capturing Hidden Voices" (PDF, 461 KB)
Nora Groce, World Bank/Yale University, April 2004
A landmark study examining the position of people with disabilities in the face of HIV/AIDS. It surveys the impact of HIV/AIDS on individuals with disability and disabled populations, documents current activities related to HIV/AIDS, identifies models of good interventions and identifies gaps in the current system where individuals with disability are overlooked or systematically excluded from outreach efforts, service delivery, etc. It is the only study, to date, that has comprehensively examined the intersecting issues of disability and HIV/AIDS on a global scale.
"Study on reproductive health and HIV/AIDS among person with disabilities in Kampala, Katakwi and Rakai Districts" (PDF, 1.5 MB)
Innocent Najjumba Mulindwa, Commissioned by the Disabled Women's Network and Resource Organization (DWNRO) with Support from Action Aid Uganda, May 2003
A comprehensive study containing data regarding sexual activity, condom use, knowledge of HIV prevention methods, and a discussion of issues such as stigma and lack of education. The report also contains recommendations for researchers, activists, and practitioners in this field.
"Bridging the gap: a call for cooperation between HIV/AIDS activists and the global disability movement" (PDF, 52 KB)
Myroslava Tataryn, Inaugural Meeting of the Canadian Association for Disability Studies, May 2004
Geared towards an audience somewhat familiar with the disability movement, but perhaps unfamiliar with AIDS issues, the paper outlines the reasons that the disability movement needs to embrace AIDS-related issues and how the AIDS movement also stands to benefit from such an alliance.
"AIDS and Disability: Tenuous Impracticality or Strategic Alliance?" (PDF, 25 KB)
Myroslava Tataryn, Third Annual Meeting of the Canadian Association for Disability Studies, May 2007
This paper builds on the ideas previously presented by the author three years earlier in “Bridging the Gap”. In addition to calling for cooperation between AIDS and disability activists, the paper examines real-life successes and challenges faced by projects implementing such alliances.
"Sexual health of women with disabilities" (PDF, 99 KB)
Rosemary Basson, Canadian Medical Association Journal (CMAJ). 1998; 159, (p. 359-62)
The author’s social model approach to disability and sexuality in a peer-reviewed medical journal is of critical importance. The medical field has played a major role in the pathologized marginalization of people with disabilities from mainstream concerns. Basson recognizes the need for physicians to reject the pervasive myths that deny disabled people’s sexuality.
"Effective HIV/AIDS and Reproductive Health Information to People with Disabilities: A Final Report" (PDF, 1.2 MB)
Alister Munthali, Peter Mvula, and Sandra Ali, University of Malawi's Centre for Social Change, October 2004
A comprehensive study using both quantitative and qualitative methods to collect information in five culturally diverse districts in Malawi. The report contains statistics regarding sexual activity, condom use, and knowledge of HIV prevention methods; it discusses issues such as stigma and lack of education and includes recommendations for researchers, activists, and practitioners in this field.
"Disabled People and Development" (PDF, 377 KB)
Lorna Jean Edmonds, Poverty and Social Development Papers. No. 12, June 2005
Poverty Reduction and Social Development Division Regional and Sustainable Development
Department, Asian Development Bank, 2005
Drawing on four country studies—in Cambodia, India, Philippines, and Sri Lanka—the report describes the evolution of the global response to disability as well as the concepts and tools for addressing disability issues. It also includes recommendations on the inclusion of disability in sectors such as health, community services and post-conflict/post-disaster rehabilitation and conciliation.
"Double Burden: A situation analysis of HIV/AIDS and young people with disabilities in Rwanda and Uganda" (PDF, 946 KB)
Aisha Yousafzi and Karen Edwards; Centre for International Child Health, Institute of Child Health, University College London; Save The Children, 2004
This document presents the results of comprehensive and in depth study of youth with disabilities and HIV/AIDS issues. The results are well laid out and easy to read. In addition to providing data, the report is useful for its basic outline of the issues surrounding the intersection of HIV/AIDS and people with disabilities. The document includes a range of targeted recommendations for policy-makers, grassroots workers, and researchers.
"Too Few To Worry About? Or Too Many To Ignore?: The exclusion of people with disabilities from HIV Programmes in India" (PDF, 301 KB)
Kevan Moll, New Delhi: Department for International Development, 2007
Building on data presented in Nora Groce’s Global Survey, the report looks more closely at the experiences of people with disabilities in the face of HIV/AIDS and includes data collected from more than 500 individual interviews with people with disabilities across India. In addition to its overview of the issue and its comprehensive data, the report includes an outline of existing projects integrating people with disabilities into HIV/AIDS education, and recommendations and strategies for further inclusion.
"Is AIDS Really a Disability? or What Can AIDS Lend to Disability Phenomenology and Culture?"
Chris Bell, University of Chicago at Illinois, 2005
The author reflects on his entry into the disability movement as an HIV-positive, gay, black American man. He makes a strong case for an alliance between the disability movement and AIDS activists while examining some of the existing tensions slowing the growth of this alliance.
"Disability, Poverty and HIV and AIDS"
Irene Banda, Bulawayo: Zimbabwe Parents of Handicapped Children Association, 2005
This report documents a study conducted by Disabled People’s Organizations in Zimbabwe on the barriers faced by people with disabilities and their families in accessing information and support from AIDS service organizations.
"HIV/AIDS and People with Disability"
Nora Ellen Groce, The Lancet, 2003, Vol. 361, 1401-1402
Groce argues for the need to address the incidence of HIV/AIDS amongst people with pre-existing disabilities, as well as access for people with disabilities to AIDS services. This paper was published in The Lancet as the Global Survey on HIV/AIDS and Disability was launched. The literature review indicates that it is among the first articles to appear in a peer-reviewed medical journal that acknowledges the vulnerability of people with disabilities to HIV/AIDS.
"HIV/AIDS and Individuals with Disability" (PDF, 328 KB)
Nora Groce, Health and Human Rights. Vol 8 No 2, 2005 (p. 215-224)
This article elaborates on the issues Groce first presented in The Lancet in 2003, using data collected during the Global Survey on HIV/AIDS and Disability.
"Guidelines for Inclusion of Individuals with Disability in HIV/AIDS Outreach Efforts" (PDF, 109 KB)
Nora Ellen Groce, Reshma Trasi and Aisha Yousafzai, Yale University, 2006
This article is based on a synthesis of materials collected during the Global Survey on HIV/AIDS and Disability. It outlines guidelines for the inclusion of people with pre-existing disabilities into AIDS outreach efforts. This is a well-argued paper probably most useful for an academic/professional audience while the “Disability and HIV/AIDS: At a glance” paper (listed under “Publications”) may be more practical for practitioners in the field.
"HIV and disability: new challenges"
Leslie Swartz, Marguerite Schneider and Paul Rohleder, in Disability and Social Change: A South African Agenda. Brian Watermeyer et al. eds., Cape Town: HSRC Press, 2006, pp. 108-115
An exploration of issues concerning people with disabilities and HIV/AIDS in the South African context. The author touches on stigma, government disability grants, and the burdens faced by people with disabilities who are caring for relatives affected by HIV/AIDS.
"Physically disabled women and discrimination in reproductive health care: Psychoanalytic reflections"
Victoria Nokwanele Mgwili and Brian Watermeyer, in Disability and Social Change: A South African Agenda. Brian Watermeyer et al. eds., Cape Town: HSRC Press, 2006, p. 261-272
The authors reveal the discrimination prevalent in attitudes and practices surrounding the reproductive rights of people with disabilities and their access (or lack thereof) to appropriate sexual health care services. By documenting typically negative experiences of South African women with disabilities in family planning clinics, antenatal clinics, and delivery rooms, the article demonstrates the need for more attention to this neglected issue.
“ ‘How could she possibly manage in court?' An intervention programme assisting complainants with intellectual disability in sexual cases in the Western Cape”
Beverley Dickman, Amanda Roux, Susan Manson, Gillian Douglas, and Nokuthula Shabalala, in Disability and Social Change: A South African Agenda. Brian Watermeyer et al. eds., Cape Town: HSRC Press, 2006, p. 116-133
This article examines the barriers faced by complainants with intellectual disabilities involved in sexual assault cases in the Western Cape in South Africa. It details the development and implementation of an intervention program aimed at making the justice system more accessible to victims of sexual assault who have intellectual disabilities.
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"Promoting sexual and reproductive health for persons with disabilities" (PDF, 1.5 MB)
WHO/UNFPA guidance note, 2009
The first comprehensive look at making sexual and reproductive health (SRH) programs and services accessible to PWD. Intended for SRH experts and advocates. Particularly helpful for those who address issues of family planning, maternal health, HIV and AIDS, adolescence, and gender-based violence (GBV).
"Disabilities among refugees and conflict-affected populations" (PDF, 950 KB)
Women’s Commission for Refugee Women and Children, June 2008
An excellent document for advocates and program staff looking for ideas and strategies for including PWD in projects and programs for refugees and other conflict-affected populations. Well-researched, easy to read and full of applicable case studies from the field.
"Best Practices—A handbook on best practices regarding HIV and AIDS for people with disabilities" (PDF, 3.1 MB)
LVCT/VSO, December 2009
Highlights some of the best practices around the world in HIV/AIDS services, programs and policies for PWD. Aimed primarily at organizations, both HIV/AIDS and disability-related, involved in programming and advocacy to influence policy and programs.
HIV/AIDS and Disability
Journal of the International AIDS Society, Thematic Series, 2009
A collection of articles on HIV/AIDS and Disability from the Journal of the International AIDS Society.
"Disability and HIV Policy Brief" (PDF, 216 KB)
UNAIDS, WHO and OHCHR, April 2009
The Joint United Nations Programme on HIV/AIDS (UNAIDS), the World Health Organization (WHO) and the United Nations Office of the High Commissioner for Human Rights (UNOHCHR) have collaborated on a policy brief that explores the links between HIV and disability and makes recommendations for policy change. The policy brief on Disability and HIV calls for HIV services to be inclusive of persons with disabilities. It makes recommendations to governments, civil society and international agencies to eliminate physical, information and communication, economic and attitudinal barriers not only to increases access to HIV programs, but to assist people in accessing broader health and social services.
"Resource Manual for Disability and HIV/AIDS Training" (PDF, 2 MB)
Edited by Myroslava Tataryn, Disabled People South Africa, 2005
Though designed specifically as an AIDS education tool for people with disabilities in the townships of South Africa, this manual serves as a guide for anyone looking to provide education on HIV/AIDS and disability as well as for people with disabilities wanting to educate themselves on HIV/AIDS issues.
"Disability and HIV/AIDS: At a glance" (PDF, 39 KB)
World Bank “At a glance" series, 2004
This 2-page backgrounder on disability and HIV/AIDS is an indispensable resource for anyone interested in the integration of disability issues with HIV/AIDS initiatives. It provides facts, a list of “do’s and don’ts” when trying to address disability issues in AIDS work, as well as useful resources for further investigation. A more in-depth examination of these topics can be found in the paper entitled “Guidelines for Inclusion of Individuals with Disability in HIV/AIDS Outreach Efforts” by Groce et al. (in the “Reports” section).
"A Health Handbook for Women with Disabilities"
Jane Maxwell, Julia Watts Belser, and Darlena David, Berkeley: Hesparian Foundation, 2007
Women with disabilities often discover that the social stigma of disability and inadequate care are greater barriers to health than the disabilities themselves. A Health Handbook for Women with Disabilities is a tool to help women with disabilities worldwide overcome these barriers and improve their general health, self-esteem, and abilities to care for themselves and participate in their communities. It also contains ideas and recommendations for health care workers trying to respond better to the needs of women with disabilities. Of particular note is Chapter 8: “Sexual health: Preventing sexually transmitted infections including HIV/AIDS” (pp. 157-184) which can be downloaded from the website. This is an excellent resource both for disabled women fighting for better access and for anyone looking for a basic introduction to issues surrounding disabled women’s lack of access to appropriate health care services.
"Access to Health Care for Women with Disabilities"
(PDF, 990 KB)
Women’s Health Exchange: A Hesparian Foundation publication for Education and Training, Issue No. 11, 2006
The Women's Health Exchange (published in English) and ¡Saludos! (published in Spanish) are free resources for education and training in women's health. These newsletters are designed to help women and community groups from around the world learn more about each other, share training ideas and information, and promote popular education on women's health. Issue #11 is dedicated to improving access to health care for women with disabilities. It is concise and easy-to-read with ideas for facilitating discussions and effecting meaningful changes at the community level.
"Disability In The Majority World"
Issue 384, November 2005
This issue of the UK-based New Internationalist magazine takes a look at disability issues exclusively in the “majority world.” It touches on a range of issues from human rights to sport. It includes facts and personal accounts. It is very accessible and can make a great resource for people who are new to disability issues in the global south.
"Difference and Defiance"
New Internationalist, Issue 233, July 1992
This entire issue of the UK-based magazine is dedicated to the international disability rights movement. Articles critique mainstream medical and charity models of disability, making a strong case for framing disability as a human rights issue. Even though it was published more than 15 years ago, this issue continues to be a great resource.
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Disability International is the quarterly newsletter of Disabled Peoples International (DPI). DPI is the only international organization linking disabled peoples organizations from around the world. The two most recent issues (Special Edition 2006-2 and Summer 2007) focus on the UN Convention for the Rights of Persons with Disabilities and its Ratification. The December 2006 issue of Disability International is also a noteworthy read as it highlights HIV/AIDS issues amongst people with disabilities. It includes short articles written by disabilities activists worldwide. The issue highlights events and issues in Malawi, Zimbabwe, Canada and the International AIDS Conference in Toronto.
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The Sexual Politics of Disability: Untold Desires
Tom Shakespeare, Kath Gillespie-Sells and Dominic Davies, London: Cassel, 1996
An interesting read and a great resource, this book of first-hand accounts examines relationships, sex, love, and abuse while demolishing the taboos surrounding disability and sex. The authors reveal typical barriers to disabled people's sexual rights and sexual expression, as well as ways in which these obstacles are being challenged.
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HIV/AIDS and Disability Global Survey
In addition to providing information about the landmark “Global Survey on HIV/AIDS and Disability” conducted by Yale University and the World Bank, this site also has a list of resources and website links related to HIV/AIDS and a range of different disabilities.
The Africa Campaign on Disability and HIV&AIDS
The Africa Campaign, founded by Handicap International and the Secretariat of the African Decade of the Disabled, is a unifying umbrella under which disabled people's organizations, organizations of people living with HIV & AIDS, non-governmental organizations, AIDS services organizations, researchers, activists, and other citizens work collectively to achieve two main objectives: 1) A coordinated response involving persons with disabilities in African countries to achieve inclusive national HIV & AIDS policies and programmes; and 2) Equal access for persons with disabilities in Africa to information and services on HIV & AIDS.
AIDS and Disability Action Program
The AIDS and Disability Action Program is a part of the BC Coalition of People with Disabilities’ "Wellness and Disability Initiative." Founded in 1988, in Vancouver, Canada, the program continues to collect and create HIV and AIDS prevention material in accessible formats for people with all types of disabilities. They have produced a set of easy-to-read-and-understand pamphlets on HIV/AIDS, condoms and safer sex geared primarily towards people with developmental/intellectual disabilities. The program has published a manual entitled "Know About Communicating with Your Doctor”, and sells "Condom Educator Kits" that coalition members have assembled.
International Information Support Centre
A collection of comprehensive lists of books, reports, manual cassettes, CDs, videos, websites, and email forums relating to different topics. Topics include "Disability, inclusion and development" and "HIV and AIDS.” Under "Disability, inclusion and development" you can find a section on "Disability and sexuality".
Sexuality and Physical Disabilities
This concise one-page fact-sheet for people with physical disabilities was published by The Canadian Federation for Sexual Health. This is a simple but excellent resource that is relevant beyond the Canadian or North American context.
Hesparian Foundation’s Online Library
Some of the Hesparian Foundation’s publications with up-to-date changes and additions are available as free downloads online. Titles include A Health Handbook for Women with Disabilities and HIV, Health and Your Community.
AIDSLEX on Disability
AIDSLEX (the AIDS and Law Exchange) gives concrete meaning to a “rights-based approach to HIV/AIDS.” This web portal is a tool for activists, community organizations, researchers, policy-makers, journalists, health workers and anyone who seeks quick and easy access to a wide range of resources about HIV, human rights and the law. It helps people around the world communicate and share information, materials and strategies, with the ultimate goal of contributing to a global effort to protect and promote the human rights of people living with or vulnerable to HIV and AIDS. AIDSLEX has highlighted disability as it's own topic area. There you can find a unique collection of disability-related legal, policy and programmatic resources and documents.
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