HIV, disability and discrimination: making the links in international and domestic human rights law
Gerald Hurowitz, M.D.·Published 17 November 2009·11 min read
Key points
Stigma and discrimination constitute one of the greatest barriers to dealing effectively with the HIV epidemic, underlying a range of human rights violations and hindering access to prevention, care, treatment and support.
Nonetheless, the extent of states' obligations to address discrimination on the grounds of HIV status has not been comprehensively addressed in any international treaty.
In December 2006, following intensive, years-long advocacy by disability rights activists, the UN General Assembly adopted the Convention on the Rights of Persons with Disabilities, which entered into force in May 2008 [1].
We do so with the conviction that the movement for human rights is stronger when constituencies with so many common and overlapping interests are united, and that respectful and strategic collaboration ultimately strengthens both the disability rights and the AIDS movements.
Stigma and discrimination constitute one of the greatest barriers to dealing effectively with the HIV epidemic, underlying a range of human rights violations and hindering access to prevention, care, treatment and support. Some have called for the creation of a specific international human rights convention to address discrimination and other human rights violations against people living with HIV or AIDS (PLHIV).
Others have felt that such an effort is impractical and unnecessary: impractical, because it can take decades to develop and negotiate a treaty through the United Nations, even where there is interest among member states; and unnecessary, because international human rights treaties have already been interpreted as prohibiting discrimination based on health status, including HIV and AIDS, which also means that discrimination that hinders the enjoyment of all other human rights protected by these treaties is also prohibited.
Nonetheless, the extent of states' obligations to address discrimination on the grounds of HIV status has not been comprehensively addressed in any international treaty.
In December 2006, following intensive, years-long advocacy by disability rights activists, the UN General Assembly adopted the Convention on the Rights of Persons with Disabilities, which entered into force in May 2008 [1]. As countries ratify the convention, they are required to amend national laws and policies to give greater protection to the human rights of people with disabilities, including abolishing disability-based discrimination by the state and protecting persons against such discrimination by others. The Disability Convention addresses many of the issues faced by PLHIV, but it does not explicitly include HIV or AIDS within its open-ended definition of "disability". We recognize that whether and how HIV and/or AIDS should be conceived of as disabilities, for various legal or other purposes, is a matter of some ongoing debate among people living with HIV, people living with (pre-existing) disabilities and those advocating for human rights in these areas. There certainly are points of divergence and some tension between movements and organizations.
Therefore, the advent of the Disability Convention prompts us to consider the links between HIV and disability and, specifically, to consider the opportunities it and other legal mechanisms, international or domestic, may afford for advancing the human rights of PLHIV as a constituency facing human rights infringements. We do so with the conviction that the movement for human rights is stronger when constituencies with so many common and overlapping interests are united, and that respectful and strategic collaboration ultimately strengthens both the disability rights and the AIDS movements.
In this article, we first examine the links between HIV and disability. We then provide a brief overview of how international human rights law has treated both disability and HIV/AIDS.
Written and revised by
Gerald Hurowitz, M.D.
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We note some of the different ways in which national anti-discrimination laws have reflected the links between HIV and disability, illustrated with some representative examples from a number of countries.
Finally, we offer some conclusions and recommendations about ways forward for collaboration between HIV and disability rights advocates in advancing human rights at the international level, including the use of the new tool, the Disability Convention. We hope these reflections will promote further discussion across movements, ultimately to the benefit of all persons with disabilities and/or HIV.
{pagebreak} HIV and disability: key links In understanding the links between HIV and (other) disabilities, it is useful first to note how conceptions of disability have developed through several stages:
The impairment perspective considers disability a health problem or abnormality that is situated in an individual's body or mind. This perspective is best expressed by the medical model which views disability in terms of disease, illness, abnormality and personal tragedy. The medical model assumes that disability is an intrinsic characteristic of individuals with disabilities. This assumption translates into practices that attempt to fix individuals' abnormalities and defects, which are seen as strictly personal conditions.
The functional limitations perspective arose from attempts to expand the medical model to include non-medical criteria of disability, especially the social and physical environment. Nonetheless, the notion that impairments are the direct cause of disability remains central to this perspective.
The ecological perspective ... sees disability as resulting from the interaction of impairment, activity limitations and participation restrictions in a specific social or physical environment such as work, home or school. [...] There are many variations of the social model, but all portray disability as a social construct created by ability-oriented and ability-dominated environments ... According to the social model, even though impairment has an objective reality that is attached to the body or mind, disability has more to do with society's failure to account for the needs of persons with disabilities.
The human rights model is a distinct subgroup of the social model. It understands disability as a social construct. The model is primarily concerned with the individual's inherent dignity as a human being (and sometimes, if at all, with the individual's medical characteristics).
Appropriately, this evolution in thinking about disability has, to varying degrees in different jurisdictions, been reflected in the law, such that HIV often falls under the rubric of "disability" for at least some legal purposes — and in particular, under anti-discrimination laws that can be used to challenge HIV-based discrimination as a form of discrimination based on disability.
The need to respond to discrimination in various forms has featured prominently in the growing calls for partnership between HIV activists and disability activists. Although in recent years the disability rights movement has made significant advances, similarly to PLHIV, people with disabilities often encounter stereotyping, discrimination and other infringement of human rights.
People with disabilities are among the most marginalized in the world, and the implications of HIV infection for people with disabilities have been largely ignored. Research has identified HIV as a significant but relatively unrecognized problem among people with disabilities worldwide [3-5]. It shows higher levels of illiteracy, unemployment and poverty among people with disabilities, factors linked to vulnerability to HIV and to a greater impact of HIV infection [6].
{pagebreak} Similarly, people with disabilities, in particular, women and young people, are at greater risk for sexual abuse or assault, elevating their risk of HIV infection [7,8]. Women, members of ethnic, sexual and other minority communities, youth, and people living in institutions are particularly at risk. It is often incorrectly assumed that people with pre-existing disabilities are not sexually active and are unlikely to use illegal drugs in ways that carry a risk of HIV infection. Thus, HIV education and other prevention efforts focused on reducing transmission through sex or drug use are rarely specifically targeted or made accessible to people with most disabilities [3]. (One notable exception is those with the medical condition of drug dependence. In a number of jurisdictions, dependence on narcotic or psychotropic drugs is recognized legally as a disability, including for purposes of protection against disability-based discrimination. Obviously, people who use such drugs, especially those who inject and those who do so frequently as a result of addiction, are particularly vulnerable to HIV infection for a host of reasons, including personal and larger structural factors that contribute to the sharing of drug-injection equipment.
A significant proportion of new HIV infections globally is attributed to the epidemic of injection drug use [9]. This, then, is one group of persons with a disability that is already recognized as requiring particular attention for HIV prevention and treatment efforts, given the direct link between the disability of addiction and a high-risk behaviour. In fact, in some quarters, the call for greater, meaningful involvement of people who use drugs in the response to HIV has been expressly framed in the language of the disability rights movement's demand for the inclusion of people with disabilities [10]).
PLHIV also experience disability related to HIV. As it progresses, HIV disease can result in mental and physical conditions that impair ability. In addition, highly active antiretroviral therapy (HAART) and other treatments, while saving and prolonging the lives of PLHIV, can also cause side effects that can be disabling. In such cases, once HIV or its treatment manifests in impairment of some sort, generic legal protection against discrimination on such grounds as "disability" ought certainly to apply. However, as should be apparent from the "social model" understanding of disability, people with HIV who are asymptomatic may experience discrimination regardless of the fact that HIV does not significantly (or at all) limit their activities, and it is instead the prejudice of others which causes difficulties (e.g., in employment, housing or services), rather than HIV infection itself.
Over the past few years, there has been greater research and attention to the links between HIV and disability, growing attention by policy makers and planners, and growing awareness of the importance of ensuring access to such services.
More HIV projects with a disability focus are being initiated and more resources are becoming available, although the need continues to far outstrip the response [11-14]. Consider, for example, this recent assessment by the South African National AIDS Council:
There has been a progressive improvement in the inclusion of disability in the national AIDS response, starting with minimal involvement at the beginning of 1992 by the National AIDS Coordinating Committee of South Africa (NACOSA), to full participation in the National Strategic Plan on HIV and AIDS and STI 2007-2011 (NSP 2007-2011).
The NSP 2007-2011 recognises two important aspects. First, that disabled people are a group vulnerable to infection with HIV and bear the impact of AIDS severely. This recognition should lead to mobilisation of resources for disability and prioritising disabled people in the AIDS response.
Second, it recognises the causal relationship between HIV and disability. This raises the need for the disability sector and people living with HIV sector, both represented in the South African National AIDS Council (SANAC), to work collaboratively in developing programmes that respond to the causal relationship. The sectors face similar challenges, such as a struggle for self-representation and the fight for recognition of human rights.
In addition, both sectors have to deal with being regarded as welfare cases, objects of medical mystery deserving of pity and ridicule." [13]
However, discussions between the disability rights movement and HIV activists reveal a gap between HIV activism and disability activism. A major factor leading to the lack of cooperation between the two movements is that both PLHIV and people with disabilities are extremely stigmatized and marginalized. Indeed, suffering from the additional burden of stigma of being seen as "disabled" has no doubt been a concern of PLHIV and AIDS rights advocates.
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They have often found themselves in the position of seeking to challenge discrimination based on incorrect assumptions that HIV infection per se renders a person unable to, for example, hold certain positions. Similarly, the intense stigma surrounding HIV, in part because of its association with sex (and in particular, disfavoured sexual minorities) and with drug-using behaviour, no doubt has created some hesitancy on the part of disability rights activists taking on HIV/AIDS as an issue of concern.
In addition, it is not a stretch to recognize that social justice advocates and movements, always struggling to secure resources to address the needs of their constituencies, will understandably be concerned that the possible conflation of HIV and disability could lead to a reduction in hard-won resources for either or both of these sectors.
Similarly, in some quarters of the disability rights movement, concern has been raised that recognition of HIV as a disability could lead, under pressure from a relatively well-organized AIDS advocacy constituency, to resources being diverted away from services or advocacy for people with (other) disabilities.
However, recently there are more and more calls for greater unity between the disability rights movement and AIDS activists [15-20]. Both the disability and HIV movements could gain from increased diversity and perspective.
People with disabilities are at an increased risk of contracting HIV; alliances with PLHIV and AIDS organizations can strengthen HIV education and prevention efforts to protect people with disabilities. Moreover, there are many advantages for inclusion of PLHIV as part of the disability rights movement. Where it is not already the case in domestic law, recognition of HIV and AIDS as disabilities for legal purposes may entitle PLHIV to health, employment or other benefits, as well as to the benefits of legislation protecting against discrimination, including the requirement of reasonable accommodation of disability (discussed below). Seeing commonalities in the stigma and discrimination experienced by both PLHIV and people with disabilities will increase tolerance and better understanding across these (overlapping) communities, and will strengthen both communities' efforts in overcoming stigma and discrimination.
-- References 1. Convention on the Rights of Persons with Disabilities, UN Doc. Doc.A/61/611 (entered into force 3 May 2008). [http://www.un.org/esa/socdev/enable/rights/convtexte.htm] 2. Office for Disability Issues, Human Resources Development Canada: Defining Disability: A Complex Issue (2003), [www.povnet.org/node/371]. 3. Groce N: HIV/AIDS and Disability: Capturing Hidden Voices – Global Survey on HIV/AIDS and Disability. World Bank & Yale University, 2004. [http://siteresources.worldbank.org/DISABILITY/Resources/Health-and-Wellness/HIVAIDS.pdf] 4. Groce NE: HIV/AIDS and Individuals with Disability. Health Hum Rights 2005, 8(2): 215-224. 5. Groce N: HIV/AIDS and People with Disability. Lancet 2006, 361: 1401-1402. 6. I Banda: Disability, Poverty and HIV and AIDS. Zimbabwe Parents of Handicapped Children Association, Bulawayo: Zimbabwe, 2002. 7. Groce N, Trasi R: Rape of Individuals with Disability in the Age of AIDS: The Folk Belief of Virgin Cleansing. Lancet 2004, 363(9422):1663-1664. 8. UNICEF: An Overview of Young People Living with Disabilities. New York: UNICEF Inter-Divisional Working Group on Young People, 1999. 9. Mathers BM, Degenhardt L, Phillips B, Wiessing L, Hickman M, Strathdee SA, Wodak A, Panda S, Tyndall M, Toufik A, Mattick RP; 2007 Reference Group to the UN on HIV and Injecting Drug Use: Global epidemiology of injecting drug use and HIV among people who inject drugs: a systematic review. Lancet 2008, 372:1733-1745. 10. Jurgens R: “Nothing About Us Without Us”: Greater meaningful involvement of people who use drugs (International edition). Canadian HIV/AIDS Legal Network, International HIV/AIDS Alliance & Open Society Institute, 2008. 11. Yousafzi A, Edwards K: Double Burden: A situation analysis of HIV/AIDS and young people with disabilities in Rwanda and Uganda. Save the Children, 2004. [http://www.savethechildren.org.uk/en/docs/Double_Burden.pdf] 12. Too Few to Worry About? Or Too Many to Ignore?: The Exclusion of People with Disabilities from HIV Programmes in India. PMO-DFID, 2007. [http://www.dcdd.nl/data/1177403566172_Disability%20&%20HIV%20Final%20Report.doc] 13. South African National AIDS Council: HIV, AIDS and Disability in South Africa. May 2008 [http://www.icdr.utoronto.ca/Files/PDF/94a3663acf97d5f.pdf]. 14. Disabled People South Africa: Resource Manual for Disability and HIV & AIDS Training (undated)
Richard Elliott, Leah Utyasheva and Elisse Zack
Journal of the International AIDS Society 2009, 2:4doi:10.1186/1758-2652-2-4 Published: 9 November 2009
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