Framing Disability: The Case of People Living with HIV/AIDS Engaging in Vocational Rehabilitation

Background and Purpose: People living with HIV/AIDS (PLWHA) have been considered a vulnerable population for the better part of the last four decades. Part of this vulnerability resides within the intersection of health and employability. PLWHA are highly susceptible to face employment problems, which is associated with declining physical health and diminished quality of life. Personal and societal attitudes toward disability benefits -primarily Supplemental Security Income (SSI) and Social Security Disability Insurance (SSDI) - have a powerful impact in the decision-making processes of PLWHA when it comes to accessing these services. The goals of this exploratory qualitative project were twofold: (1) assess the different ways in which PLWHA frame and value disability-related approaches and identities and (2) evaluate whether these experiences promoted or hindered their vocational rehabilitation goals.

Methods: Data originated from a cohort of 108 PLWHA who had recently accessed vocational rehabilitation services. A sub-sample of 22 participants were purposively sampled based on time since HIV diagnosis and perceived social standing. We employed a grounded theory approach to develop themes relevant to the study and utilized Atlas.ti to analyze transcripts of semi-structured qualitative interviews. Data was collected between 2011and 2012 in San Francisco, CA.

Results: Seventy three percent of our participants were over the age of 40, 55% Caucasian and 68% male. The data revealed that participants receiving disability benefits were more likely to frame the process of disability as a brand of restrictive, but necessary safety net. They also viewed the process and the benefits as being tied to their whole identity. Participants not receiving disability benefits tended to be more concerned with the concept of being ‘deserving’ or ‘entitled’ to these benefits, as well as seeing them as part of a temporary situation. They also tended to engage in a form of “othering” or trying to distance themselves from people in similar circumstances who received these benefits. A salient issue for both sub-groups was the role that syndemics and co-morbidities played in disability-related decision-making processes. The desire to avoid the bureaucratic burden of applying for disability benefits, as well as the need to avoid being labeled as ‘disabled’ seemed to motivate participants not receiving disability benefits to pursue vocational rehabilitation more expediently than those participants who were receiving disability benefits.

Conclusions and Implications: These data highlight the importance of service providers helping social services client to forge self-affirming identities in relationship to their needs, entitlements and goals. Policymakers could benefit from these data, as a starting point to destigmatize society’s perception of disability benefits and those receiving or considering them.