Recently, researchers and advocates have brought to light the extra financial costs of living with disabilities, or as some have called it the “crip tax.” They showcase the expenditures disabled people make because they have a disability, which are usually invested in necessities such as assistive technology, household accessibility renovation, service animal maintenance, or the purchase of special food due to dietary restrictions. These expenses are particularly onerous as this population has historically faced major barriers to entering and staying in the workforce, in addition to earning lower wages on average compared to their non-disabled peers.
In her excellent new article, Disability Admin: The Invisible Costs of Being Disabled, Liz Emens makes an important contribution to this discourse about the “taxes” imposed on individuals with disabilities. Emens exposes and conceptualizes other significant, yet non-financial, costs imposed on individuals with disabilities as they move through the non-disabled world. These costs are borne out of the incredible amount of time and mental energy people with disabilities exert on a daily basis while engaging with mundane tasks (like repeatedly explaining their needs to strangers, filling endless amount of forms, or constantly rearranging their routes so that they would be accessible), red tape, and the advocacy needed to exercise their rights. This is a type of labor which Emens calls “disability admin,” and is an extension of her work on “life admin.”
Weaving together original interview data, classic and contemporary texts in disability studies, case law, and even a description of an art installation, Emens richly describes the admin work disabled people are forced to engage in. She divides this labor into three categories: medical admin, benefit admin, and anti-discrimination admin.
While all of us experience the pitfalls of the managed-care health system to some degree, with its constant burden of navigating referrals, appointments, and documentation, such requirements have a disproportionate impact on many disabled individuals, who are legally required to constantly prove their status. While encounters with the healthcare system are also commonplace among non-disabled people, other experiences that Emens describes, such as applying for public benefits or being dependent on an inaccessible public transportation system, may be less familiar to non-disabled persons. Emens’s piece makes a persuasive argument that, when judges examine the “reasonableness” of disability accommodations in the workplace and in educational settings using a cost-benefit analysis or when they discuss whether a federally funded service is “readily accessible,” disability admin must be taken into account.
The internal conflict of when, how, and what exactly should be asked for when exercising disability rights, as well as the role law plays in disincentivizing potential claimants, are also issues that Emens brings to light in the piece. Reminiscent of the classic Naming Blaming Claiming framework on the emergence of legal claims (put forward by William Felstiner, Richard Abel, and Austin Sarat), Emens shows us that it is this constant need to advocate for oneself that makes up so much of disability admin.
In a sense, Emens is doing for disability studies what psychologists like Virginia Brooks1 and Ilan Meyer2 did for the LGBTQ community when they coined the term “minority stress” in the 1980s. Minority stress is the emotional tax experienced by minority group members that arises from daily conflicts they experience with the social environment. It includes the symbolic interactions that signal to the individual that he or she is different and needs to work harder to fit in, which have a documented cumulative effect on mental health and well-being. As Emens shows, a similar process occurs for people with disabilities who endeavor to utilize legal rights and benefits, except that, for them, it is an endless struggle not only against societal attitudes but against built environment and infrastructure. In a world which was not built with their needs in mind, it is no wonder that such an uphill battle causes many disabled persons to experience “advocacy fatigue.”
Emens’s Article is also in conversation with two other exciting forthcoming pieces on the evolving nature of the doctrine around disability accommodations by Kathrine Macfarlane and Shirley Lin. Taken together these three papers exemplify a relatively new strand of disability law literature, one that not only theorizes concepts such as the social model and analyzes court cases, but which makes a point of centering disabled people’s lived experiences.
The joy Emens must have felt in combining two of her strands of research in the last 15 years, disability rights law and the effects and legal manifestation of life admin, spills off every page. This joy is infectious and makes for an enjoyable and fascinating read. Emens’ piece has ramifications beyond the courts. Following a year in which professors encountered many more requests for disability accommodations and modifications due to the COVID-19 pandemic, lessons from the piece may easily be applicable to the realm of higher education generally and to legal academia in particular. Exposure to the invisible labor and the toll disability admin takes on students receiving accommodations should lead professors to develop a better understanding of the limitations and promises of disability rights law. In turn, one cannot help but hope that such knowledge will help foster trusting student-professor relationships and inclusive approaches moving forward.
- Virginia R. Brooks, Minority Stress and Lesbian Women (1981).
- Ilan H. Meyer, Minority Stress and Mental Health, 36 J. Health & Soc. Behav. 38 (1995).