The fields of HIV and disability: past, present and future

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.