Related Experiment Video
Updated: Jun 18, 2025

Development of a Virtual Reality Assessment of Everyday Living Skills
Published on: April 23, 2014
Who Counts? Care, Disability, and the Questionnaire in Jesse Ball's Census
1, Greensboro, USA. emhall74@gmail.com.
None:
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.
More Related Videos
11:21Methodology for Establishing a Community-Wide Life Laboratory for Capturing Unobtrusive and Continuous Remote Activity and Health Data
Published on: July 27, 2018
07:40Validation of a Psychosocial Intervention on Body Image in Older People: An Experimental Design
Published on: May 31, 2021
Related Concept Videos
Types of Surveys
Data Collection III
The principles to begin the physical assessment include conducting a comprehensive or problem-related history in a quiet, well-lit room, emphasizing privacy and comfort for the...
Standards of Care I
Documentation in Long-Term and Home Healthcare Setting
Long-Term Care Facilities
Data Collection by Survey
Surveys