"Being on SSI Is a Full-Time Job:" Criminalized and Invisibilized Labor of Social Security Disability Beneficiaries

Background and Purpose: Disabled individuals, their families, and communities are more likely to live in poverty than their non-disabled counterparts. The Social Security Administration (SSA) provides cash assistance through social insurance (Social Security Disability Insurance, or SSDI) and public assistance (Supplemental Security Income, or SSI) programs to people who meet eligibility criteria. The SSA has work incentive programs that encourage enrolled disabled people to return to the workforce, yet has found that these programs are infrequently utilized. This research aims to fill both knowledge and methodological gaps in the literature. Previous research has not yet investigated how disabled people make occupational and economic decisions and what barriers and strategies exist to survive within SSI/SSDI programmatic confines. Qualitative methods that uncover this decision-making by involving those impacted by the program can help to fill this gap.

Methods: Using qualitative, semi-structured, in-depth interviews, 13 people were interviewed for approximately one hour about their sources of income and economic strategies. Subsequently, interviewees met together in a member-check group to ensure rigor of researcher’s interpretations. Interviews took place with residents of the Bay Area in California. Interviews were transcribed and analyzed using the data analytical software Dedoose. Both deductive and inductive strategies were employed in this qualitative analysis. Analytical memo-writing was used as a reflexivity tool to remain faithful to participant interview responses as the data source and strengthen the rigor of the research. The themes that emerged spanned multiple domains such as experiences of ableism, concrete strategies, and structural critiques of the SSI/SSDI programs. This paper focuses on the concrete strategies for survival and other work-related domains.

Results: While only one interviewee had participated in a SSA work incentive program, all interviewees described a tremendous amount of routine labor ranging from 5-40 hours per week, both paid and unpaid. The labor largely fell into two categories: 1) Criminalized: Money-making work that participants shielded from reporting in order to maintain their life-sustaining benefits and 2) Invisibilized: work done without monetary compensation that was therefore discounted in the labor market. In the first category, work was done as a survival mechanism, such as to minimize the numbers of meals skipped per month. In the second category, work was done for necessary life management such as the bureaucracy required by SSI to remain on benefits as well as for social and altruistic reasons. Interviewees reported volunteering in worksites where others were paid for the same work because they sought a sense of purpose and community.

Conclusions and Implications: Data grounded in behaviors of people on SSI/SSDI provided an empowering experience for interview participants, many of whom alluded to feeling “heard” and eager to communicate to policy makers whose decisions impact their daily lives. Moreover, participants’ work lives showed that while they were not using the SSA work incentive programs, they were in fact working. These findings warrant further investigation in a wider sample and alternate geographic areas. Further, they suggest that work does not need incentivizing, rather SSA policy shifts that recognize and legalize work are needed.