Whereas stories of the earliest activism on HIV began with the voices of people living with HIV in America and Europe, so this arm of the story begins with people who have disabilities, and professionals working in the field of disability. Unlike the history of HIV, however, this story has a strong link to Africa, where it embraced development concerns from the start.
It was disabled people’s organizations and disabled service organisations in Africa that raised concerns about HIV.  These are organisations driven largely by people with disabilities,  their parents,  and other caregivers that provide services and advocate with and for people with disabilities. They enjoy a long history in both rich and poor countries and have an infrastructure that spans the local, national, regional and global levels. 
Within poor countries, disabled people’s organizations and disability services typically subscribe to a community-based rehabilitation model.  Community-based rehabilitation is a community development strategy, which sits in contrast to institutional-based rehabilitation approaches (e.g., rehabilitation services based in hospital settings).  It promotes not only technical rehabilitation solutions,  but also the equalization of opportunities and social integration of all people with disabilities [53, 54]. Furthermore, community-based rehabilitation (CBR) provides services that reach into rural areas that are otherwise underserved by formal health care. This model of care focuses on working with local people and training them to use indigenous materials to enable basic rehabilitative interventions and care.  It was within this network of care that HIV was identified as a threat in southern Africa [54-56].

In the early 2000s, some disabled people’s organizations in Africa identified that their caregivers and CBR workers were becoming infected and affected by HIV.  Disability programmes,  like Comprehensive Community-Based Rehabilitation Tanzania, started offering HIV services (e.g., voluntary   counselling   and   testing,  and   home-based   care)  in   parallel   to   their   disability programming in response to this emerging need within their communities [54].  It was soon realized, however, that HIV services were needed by people with disabilities themselves [24, 55]. 

The first mention in the literature of people with disabilities in Africa at risk for HIV arrived in 2000 when Osowole and Oladimeji [57] described an evaluation of a peer-based HIV prevention intervention conducted in two Nigerian schools that enrolled both deaf and hearing students. The intervention was shown to increase knowledge about HIV but to have no effect on perceptions of personal susceptibility to HIV. Comparison to hearing population was not reported. 
In 2002,  the international development agency,  Save the Children,  commissioned a study to explore approaches to engaging youth in the response to HIV [58]. The project involved action research interventions in two communities that had previously been overlooked in HIV prevention responses: youth in a rural community in South Africa, and youth in a school for the blind. Thus, although there were important pockets of awareness prior to 2004, the Global Survey on HIV/AIDS and Disability filled a significant research gap and catalyzed a collection of advocacy and research activities [23, 24, 59]. 
2004 – Recognition from the north: a symposium in Germany
In 2004, a landmark symposium on disability and HIV was coordinated in Germany by a network called People with Disability in the One World [55].  This symposium brought together academics,  service providers and disabled people’s organizations from Europe,  North America and Africa to discuss the vulnerability of people with disabilities to HIV.  The symposium included the presentation of some of the first research in the area, including preliminary results from the Global Survey on HIV/AIDS and Disability.

This academic information was complemented by insights from service providers and disabled people’s organizations.  For example,  a representative from the international non-governmental organization, Handicap International, described its programmes that address the vulnerability of people with disabilities, which had been initiated in 2000 [60]. One of these programmes, based in Kenya,  sought to make voluntary counselling and testing (VCT)  and other prevention interventions accessible for blind people. A second programme, operating in France, focused on people with intellectual disabilities and involved discussion groups of people with disabilities, their caretakers and professional counsellors to discuss sexual and reproductive health.  The discussions aimed to open up space to address issues of intimacy among people with intellectual impairments and, thus, decrease the stigma surrounding issues of sexuality for these people with disabilities [55]. 
The   director   of   Comprehensive   Community-Based   Rehabilitation   Tanzania   described   the experience in Tanzania, where HIV was increasingly affecting the disabled population [61]. He explained that the question had shifted from “if” to “how” rehabilitation programmes should get involved in HIV, but lamented the fact that few programmes had adapted to meet these evolving needs. 
Also at the symposium was Disabled People South Africa, a disabled people’s organization that emerged in 1984 as a direct result of the double discrimination facing black people with disabilities under the apartheid regime in South Africa [62]. This organization was represented by prominent activists,  Emily Ntuli and Andrew Dube,  who described the disability and HIV situation in their country as desperate [63, 64]. HIV services were described as inaccessible for people with disabilities. Furthermore, stigmatization, sexual abuse and exploitation were flagged as factors driving the epidemic within the disabled population. Dube called for strategies in three fundamental areas:[63]

1.  Implementing interventions to build awareness around HIV and sex education for youth with disabilities;
2.  Expanding research on disability and HIV,  particularly in the context of sexual and reproductive health and gender-based violence; and
3.  Promoting safer sexual practices among people with disabilities in a manner that is consistent with the best available research (noting that the legitimacy of mainstream HIV research was being questioned by the South African government at the time).
2006 – National disability advocacy at the epicentre of the HIV epidemic: South Africa
In 2006, the South African Department of Health began developing a new strategic plan for HIV and AIDS, and called upon all sectors to provide input. The disability sector in South Africa was well organized. The highlight of this advocacy effort was the forming of the South African Disability Alliance (SADA) formerly known as the South African Federal Council on Disability (SAFCD). Through them the disability sector was represented at the South African National AIDS Council.  The sector convened to develop input for the draft South African National Strategic Plan 2007-2011.

Through these efforts,  people with disabilities became recognized as a vulnerable group and sector within the new National Strategic Plan [49, 65, 66]. As a result, South Africa is recognized as one of the few countries in Africa that has comprehensively incorporated concern for people with disabilities into its HIV strategy [21].

2007 – Regional disability advocacy: the Africa Campaign on Disability and HIV/AIDS
At the regional level, 2007 saw the birth of the Africa Campaign on Disability and HIV/AIDS [67, 68]. This movement was spearheaded through the joint leadership of Handicap International and the Secretariat of the African Decade of Persons with Disabilities (1999-2009). The goal of the   African   Decade   of   Persons   with   Disabilities   is   the   full   participation,  equality   and empowerment of people with disabilities in Africa; one of its five programmes focuses on HIV [69]. 
The Africa Campaign on Disability and HIV/AIDS was launched in January 2007 at a meeting that brought together disabled people’s organizations and service providers from African countries.  The objectives of the campaign were to promote:  a coordinated response involving persons with disabilities in African countries to achieve inclusive national HIV and AIDS policies and programmes ; and equal access for persons with disabilities in Africa to information and services on HIV and AIDS [70].
At its second meeting, held in Uganda in 2008, the campaign launched the Kampala Declaration, which calls for “all governments to include disability in its diversity as a cross-cutting issue in all poverty reduction strategies” [71]. The Kampala Declaration has since been used as an education and advocacy tool with African governments, and was at the centre of the campaign’s activities at the third meeting, which was held on the margins of the International Conference on STIs and HIV/AIDS (ICASA)  in Dakar,  Senegal,  in December 2008.  At this meeting,  the campaign lobbied for the needs of people with disabilities by posing disability-related questions to conference presenters and through facilitating special sessions that focused on disability and HIV. 

Jill Hanass-Hancock and Stephanie A Nixon

Health Economics and HIV/AIDS Research Division (HEARD), University of KwaZulu-Natal, South Africa
Department of Physical Therapy, University of Toronto, Canada, and Research Associate, HEARD, University of KwaZulu-Natal, South Africa

Journal of the International AIDS Society 2009, 2:3   doi:10.1186/1758-2652-2-3
Jill Hanass-Hancock (.(JavaScript must be enabled to view this email address))
Stephanie A Nixon (.(JavaScript must be enabled to view this email address))

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Full references

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