The U.S. Census Bureau wants to change how it asks about disabilities, but some advocates complain they weren’t adequately consulted about the change, which would mark a major federal overhaul of how disability is defined.
Disability advocates say the change will artificially cut the number of people with disabilities by nearly half. At stake is not just whether people with disabilities will get critical resources for housing, schools and program benefits, but whether they’re being counted accurately in the first place, experts said.
Some have also questioned the timing of the change, as the COVID-19 pandemic is causing an increase in people with new long-term conditions.
Census Bureau officials say the proposed changes to the most comprehensive survey of American lives will bring the U.S. in line with international standards and allow for comparisons between countries. They also say the changes will better capture how disability occurs in the real world, because disability rarely fits neatly into a clear-cut “yes” or “no” box that doesn’t allow for variation and nuance.
Scott Landes, an associate professor of sociology at Syracuse University, said the bureau has spent time, money and energy trying to increase the numbers of historically underrepresented racial and ethnic minorities, but it seems ready to change the questions to one that will undercount people with disabilities.
“This seems illogical to me,” Landes, who is blind, said in an interview. “There’s a part of me that thinks, ‘How dare you think we’re not important?’ It makes me angry.”
If finalized, the changes to the American Community Survey questions would take effect in 2025. The ACS is the most comprehensive survey of Americans’ lives, including commute times, internet access, family life, income, education level, disabilities and military service. The bureau was asked to make the changes by the National Center for Health Statistics and is accepting public comment on the proposal until Dec. 19.
Existing questions ask respondents to answer “yes” or “no” if they have difficulty or “great difficulty” seeing even with glasses; are blind; are deaf or hearing impaired; have a physical, mental, or emotional condition that makes it difficult to concentrate, remember, or make decisions; have difficulty walking, climbing stairs, dressing, or bathing; or have difficulty performing everyday tasks because of a physical, mental, or emotional condition. If the answer is “yes,” you are considered disabled.
Under the proposed changes, respondents would be able to answer almost the same questions with four options: “no difficulty,” “some difficulty,” “very difficulty” or “not at all.” The language of the questions would be adjusted and the proposal would add a question asking whether respondents have difficulty communicating.
But the most significant change concerns the threshold at which someone is considered to have a disability. The international standards under consideration by the Census Bureau typically define someone as having a disability if they report that they are “not able to do” or “have a great deal of difficulty” performing some task or function.
In tests conducted by the Census Bureau last year, the percentage of respondents defined as having a disability rose from 13.9% under the current question to 8.1% under the international standard, and rose to 31.7% when the definition was broadened to include “some difficulty.”
Marlene Salo said her degenerative spinal condition causes occasional challenges but overall allows her to carry out daily activities, and she worries the revised questions would mean she would not be considered disabled.
“Right now it’s not inclusive, and it leaves a lot of people in my community behind,” Salo, executive director of the National Disability Rights Network, said last month at a meeting of a Census Bureau advisory committee, on which she serves.
Census Bureau and Health Statistics officials say the change will give staff more information and detail about disabilities to help them decide how to provide services and resources. Census Bureau officials held two conference calls this week with disability advocates about the issue.
“Forcing a dichotomy hides nuance,” Julie Weeks, an official at the National Center for Health Statistics, said in a presentation last month.
The terminology surrounding disabilities has evolved in recent years, moving away from labels that imply inferiority to more nuanced language that outlines the particular conditions or circumstances that individuals or groups live in. Whenever possible, The Associated Press honors the wishes of individuals and groups in how they are portrayed, but uses neutral language that does not pass judgment on an individual’s condition.
Disability advocates say the international standards were developed without their input, and last month the Census Bureau’s National Advisory Committee recommended that the statistics agency not adopt the changes until it further consults with disability advocates and researchers.
Andrew Houtenville, research director at the University of New Hampshire’s Institute on Disability Studies, told members of the national advisory committee at a meeting last month that while the proposal may be appropriate for scientific research, if approved, the questions would be tailored to the needs of institutions, not people with disabilities.
“This came as a surprise to a lot of people,” Houtenville said.
Some experts believe the current questions don’t adequately take into account people with mental illnesses, developmental disabilities and chronic medical conditions, such as those faced by many long-term COVID-19 patients, but they say the proposed changes are not the answer.
“Disability is an evolving concept, and there are new kinds of disabilities, long COVID, that didn’t exist five years ago, and we need to take that and other changes into account,” said Susan Popkin, co-director of the Disability Equity Policy Initiative at the Urban Institute, who has a chronic autoimmune disease.
The proposed changes have frustrated some advocates because they come at a time when disability has grown as an identity and a social movement, rather than simply a definition of a person’s limitations based on function. For example, a person with limited hearing may be able to function fully with the help of a hearing aid and still identify as disabled.
“Some people are proud of their disability but don’t want the pain and symptoms that cause it. This is part of the changing demographics of people with disabilities,” said Bonnie-Lynn Swenor, director of the Johns Hopkins University Center for Disability Health Research, who is visually impaired.
“There’s a shift in mindset towards disability pride and claiming one’s disability identity as part of who they are rather than as a flaw,” Swenor said.
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