Structurally Disabled: A Qualitative Study of Structural Contributors to Disability
By Makini Chisolm-Straker, White House Fellow / May 29, 2024
In 1935, Social Security was born of an intention to provide economic security for the people of the United States. Even then, Secretary of Labor Frances Perkins noted that the first iteration of Social Security would not be complete. Social Security has been amended multiple times over the years to improve the program and extend the economic support Social Security programs provide. Nearly 90 years later, Social Security keeps getting better. In 2022, Social Security set out to understand more about how to support potential applicants and actual recipients of Supplemental Security Income (SSI) and Social Security Disability Insurance (SSDI) programs.
In a qualitative study to explore this issue, Social Security collaborated with 13 lived experience experts who comprised a technical working group (TWG). In 2023, Social Security interviewed 44 people (not on the TWG) from around the United States. In 90-minute interviews, people who experience disability shared their thoughts about structural barriers to participating in social, economic, and political aspects of community. You can read the study report here, watch an American Sign Language summary video with closed captioning, or watch the live action narrated summary video.
Many of the structural barriers people identified were not specific to Social Security or its services. For example, participants shared about the value of seeing people with impairments represented truthfully. Accurate representation of people with impairments in media is limited but growing. Study findings underscored that insufficient and incomplete representation contributes to a false perception that impairment is uncommon and therefore accommodations are not necessary. The CDC estimates that at least 1 in 4 people in the U.S. experience disability. Accommodations are essential.
Study participants also offered lived experience insights on how Social Security affects them and on ways the agency can improve. For example, under current law, Social Security uses a binary, economic model to determine disability. This means that Social Security considers a person “disabled” if their impairment prevents them from working. This framing of disability does not reflect the diverse and nuanced realities of people’s experiences with impairment and disability in the United States.
A common concern voiced among participants was about the limitations on how much disability benefit recipients can earn and save. This, in combination with the modest monthly cash amount dispensed to people who meet Social Security disability qualifications, limits disability benefit recipients’ ability to have the same quality of living as nondisabled people. The data generated in this study can strengthen Social Security’s advocacy efforts to better people’s economic security.
Recently, Social Security announced the final rule, “Omitting Food from In-Kind Support and Maintenance Calculations.” This is exciting and important because it removes a barrier for SSI recipients who receive informal support in the form of food and eliminates one cause of recipients’ monthly payment variation. This new rule resonates with the lived experiences of disability benefit recipients.