Who Counts? Care, Disability, and the Questionnaire in Jesse Ball's Census.

Abstract

In the Biopolitics of Disability, David Mitchell and Sharon Snyder (2015) assert that disabled people are subjected to endless health and government questionnaires that harvest their data in exchange for better care. As disability advocates such as the National Disability Rights Network (2021) have demonstrated, these questionnaires-like the 2020 census-are highly flawed because disabled populations are not asked to shape the questions that will determine government funding and access to medical care. Although data collection is a source of contemporary literary and scholarly interest, few works explore this in the context of disability. However, Jesse Ball's 2018 novel Census examines questionnaires, specifically the census, and illuminates how narratives of disability are warped by the faulty data these objects collect. I argue that the protagonist, a dying father whose son has Down syndrome and requires full-time care, uses what Jack Halberstam calls "queer failure" to create a more equitable census that will make possible the kinds of care disabled populations deserve. Rather than create a perfect, objective questionnaire, the father skews the questions and data to center disability in the story of America, as he moves away from recording everyone's experiences and instead highlights the lives of disabled people, their caretakers, and their systems of care (doctors, neighbors, etc.). I suggest that this "failed" census reveals those networks and systems of interdependency that scholars like Judith Butler (2020) and advocates such as Leah Lakshmi Piepzna-Samarasinha (2018) posit would radically change how care is approached, thus rendering the census as an object of care.