This article provides an historic overview of the fields of disability and HIV. We describe this area of concern in terms of “fields” versus “a single field” because of the two related but distinct trends that have evolved over time. 
The first field involves people living with HIV and their experiences of disability, disablement and rehabilitation brought on by the disease and its treatments.

The second involves people with disabilities and their experiences of vulnerability to and life with HIV.  These two fields have evolved relatively independently over time. However, in the final section of this article, we argue that the divide between these fields is collapsing, and that this collapse is beginning to produce a new understanding about shared concerns, cross-field learning and the mutual benefits that might be realized from integrating policy and programmatic responses.  The histories described in this article draw heavily on experiences in Canada,  western Europe and southern Africa, and the particular advances that have taken place within these contexts. 

A note about definitions of disability
It is important to point out that in this article,  the term,  “disability”,  is used in different ways. Disability means different things to different groups of people,  some of which are more politically charged than others and some of which have more positive or negative connotations. 

In Part 1, we use the term, disability, largely as it has been described in the HIV literature. In this sense, it refers to the disabling effects of HIV, its secondary conditions and the side effects of medications. These disabling effects may be episodic and unpredictable, or permanent. However, another common understanding of the term is in reference to disability grants or benefits, which are typically a government subsidy (for example,  in South Africa)  for people unable to work because of a long-standing ailment or condition, which can include HIV. 
In Part 2,  we use the term,  disability,  largely as it has been used within the “disability community”, which refers to the movement driven by people with auditory, visual, physical and intellectual impairments and their advocates. Although there is much debate in this community about theories of disability, the social model of disability is one leading approach that is often used to highlight the disabling role of society on individuals in contrast to more medicalized definitions. 
The UN Convention of the Rights of Persons with Disabilities further states that: “Persons with disabilities   include   those   who   have   long-term   physical,  mental,  intellectual   or   sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others.”[1] Whether this definition will be able to serve as a bridge between these two fields has yet to be seen. However, most important is to note that issues of language are important when discussing disability and have helped to shape the discourses in these two fields.

Part 1: People living with HIV and experiences with disability
The story of HIV and disability mirrors the political history of HIV itself, both in terms of the (in)attention paid to the plight of people in poor versus wealthy countries until the recent past, and the delivery of HIV treatment in these two environments. The International AIDS Society’s (IAS’s) International AIDS Conferences, biannual global meetings on HIV and AIDS, provides a framework for telling this story. 
1996-1998 – good news and bad news
The mood at the XI International AIDS Conference in Vancouver in 1996 was excited and optimistic. A new class of antiretrovirals (ARVs) called protease inhibitors had been discovered.

When added to the two existing classes of ARVs, the result was the then-called “drug cocktail” (now called combination therapy,  or highly active antiretroviral therapy,  HAART),  which appeared to be bringing people “back to life”[2]. It was good news indeed. 
Two years later,  at the XII International AIDS Conference in Geneva in 1998,  the atmosphere was far more dismal. Not only had it been discovered that HAART produced a myriad of side effects (ranging from bothersome to fatal), but research was also showing that the positive effects of HAART were difficult to maintain over time due to drug resistance. As people living with HIV “failed on treatment” (a phrase which should be reversed to reflect “treatment failing people”), new regimens had to be introduced, with uncertainty about both the potential positive and adverse effects of the drugs. 

As a result, in a few short years in the latter half of the 1990s, the experience of living with HIV for people who could access these new treatments had shifted from,  typically,  a fairly quickly progressing terminal illness to a life of hope combined with uncertainty.  People were living longer,  but with new experiences of episodic illness and disablement as a result of secondary effects of HIV (i.e., a broad range of HIV-related conditions that previously had not had time to surface), as well as the side effects of treatment [3].
Thus,  it was the advent of HAART in developed countries that led to a response from governments, clinicians and, most significantly, the HIV community that sought to address this new experience of living with 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))

References

1.      United Nations: UN convention on the rights of persons with disabilities.  2008. [http://www.un.org/disabilities/default.asp?id=150]
2.      Brashers DE, Neidig JL, Cardillo LW, Dobbs LK, Russell JA, Haas SM: “In an important way, I did die’: uncertainty and revival in persons living with HIV or AIDS. AIDS Care 1999, 11:201-219.
3.      Nokes KM: Revisiting how the chronic illness trajectory framework can be applied to persons living with HIV/AIDS. Scholarly Inquiry for Nursing Practice 1998, 12:27-31.
4.      Philips A, O’Dell MW, Mills B: Comprehensive guide for the care of persons with HIV disease: Module 7-HIV rehabilitation services. Ottawa, Canada: Health Canada; 1998.
5.      World Health Organization (WHO): International Classification of Functioning Disability and Health Geneva: WHO, [http://www.who.int/classifications/icf/en/] 2001.
6.      Nixon S, Cott C: Shifting perspectives: reconceptualizing HIV disease in a rehabilitation framework. Physiotherapy Canada 2000, 52:189–197.
7.      Rusch M, Nixon S, Schilder A, Braitstain P, Chan K, Hogg R: Impairments, activity limitations and participation restrictions: Prevalence among persons living with HIV/AIDS in British Columbia Health and Quality of Life Outcomes 2004, 2:46.
8.      The Cross Cluster Initiative on Home-Based Long-Term Care, The Department of HIV/AIDS and Family and Community Health of the World Health Organisation: Community home-based care in resource-limited settings. A framework for action. World Health Organisation, Geneva; 2002.
9.      Worthington C, Myers T, O’Brien K, Nixon S, Cockerill R: Rehabilitation in HIV/AIDS: development of an expanded conceptual framework. AIDS Patient Care and STDs 2005, 19:258-271.
10.    Myezwa H, Stewart A, Musenge E, Nesara P: Assessment of HIV-positive in-patients using the International Classification of Functioning, Disability and Health (ICF), at Chris Hani Baragwanath Hospital, Johannesburg. African Journal of AIDS Research 2009, 8:93-106.
11.    Canadian Working Group on HIV and Rehabilitation: Resources on Episodic Disability [http://www.hivandrehab.ca/EN/resources/episodic_disabilities.php]
12.    O’Brien K, Wilkins A, Zack E, Solomon P: Scoping the field: Identifying key research priorities in HIV and rehabilitation. AIDS and behavior. March 2009. DOI 10.1007/s10461-009-9528-z. 2009.
13.    O’Brien K, Bayoumi AM, Strike C, Young N, Davis AM: Exploring disability from the perspective of adults living with HIV/AIDS: Development of a conceptual framework. Health and Quality of Life Outcomes 2008, 6:76.
14.    Ernst J, Hufnagle KS, Shippy A: HIV and Older Adults. New York: AIDS Community Research Initiative of America; 2008.
15.    Booysen F: Social grants as safety nets for HIV/AIDS-affected households in South Africa1(1). SAHARA Journal 2004, 1:45-56.

Full references

The complete article is available as a provisional PDF.