10 November 2023

Paging Eric Arthur Blair

Eric Arthur Blair
Aka George Orwell

In response to the explosion of Long Covid related disability, the Census Bureau is proposing to redefine disability in order to obscure the reality that the pandemic is still ongoing and dire.

I believe that the technical term for this used by public health experts is, "Bullsh$#." 

I wrote about this 1½ weeks ago, but this article details the profoundly negative effects of this bit of hypocrisy than the Ecch (Tweet) that I quoted:

The U.S. Census Bureau may soon change the way one of its nationwide surveys asks about disability. But alarm bells are ringing for many researchers and activists, because the proposed change would dramatically decrease the official number of people in the United States who are considered disabled.

“Disabled people are already underserved,” says Scott Landes, a sociologist at Syracuse University who studies disability. Altering the way the Census Bureau gathers disability statistics, he argues, will generate “inaccurate information.” In an 18 October letter, he and other disability researchers and advocates called for the Census Bureau to reconsider.

The change concerns a section of the bureau’s annual American Community Survey (ACS), which serves as an important source of demographic, social, and economic data. The ACS uses a set of six yes-or-no questions—related to difficulty with hearing, vision, and other functions—to determine disability status. A respondent who answers “yes” to any of those questions is counted as disabled. Many state and federal programs rely on ACS data when allocating funding, and the data are used to evaluate whether disabled people are being given equal opportunities when it comes to things like housing, education, and health care. But the ACS is also a vital resource for researchers. “It certainly has the ability to drown out a lot of better designed sources of disability data,” says Jaime Seltzer, a disability activist and researcher at Stanford University who uses the data for her own work on chronic fatigue syndrome. In the wake of the COVID-19 pandemic, Seltzer says many are also using the data for research on Long Covid.

Now, bureau officials are recommending replacing those questions with a set developed by the Washington Group on Disability Statistics, a United Nations–convened organization that creates disability data collection tools for censuses and national surveys. The agency’s Decennial Statistical Studies Division made the recommendation at a 21 September meeting of the Census Scientific Advisory Committee (CSAC). The Washington group’s method, known as the Washington Group Short Set on Functioning (WG-SS), also consists of six questions that cover the same topics as the ACS questions. Instead of answering “yes” or “no,” however, respondents rate their level of difficulty on each function by choosing one of four options ranging from “no difficulty” to “cannot do at all.”

Compared with the current questions, the WG-SS will “capture information in a manner that reflects advances in the measurement of disability,” an agency spokesperson said in an emailed statement. But it would also reduce the prevalence of disabled people in the U.S. to 8%, down from the ACS’s current estimate of 14%, bureau statisticians reported at the September CSAC meeting. This decrease has to do with how the WG-SS defines “disability,” as Washington group protocol states that only those who indicate “a lot of difficulty” or “cannot do at all” for one or more of the questions should be categorized as disabled.

 If you believe this, then I have some swampland in Florida to sell you.

This is a political move, not a scientific one.

BTW, that 6 percent difference, that's about 19 million people, and a significant portion of those are people who would otherwise be a part of the workforce.


Bonnielin Swenor, who serves as director of the Johns Hopkins University Disability Health Research Center, says the change would have “massive consequences for a group that is already struggling, pleading, begging for our data to be collected in a more robust way.” Swenor, who served as the lead author of the 18 October letter, also says asking respondents to rank their difficulty level “entrenches a hierarchical view of disability” that implies some within the disabled community are less deserving of accommodations than others.

That's a feature, not a bug.  They want a return to normalcy, and they are determined to get it if it kills every person in the United States.


Neither method is perfect, however. Both the ACS and WG-SS questions do a poor job of accounting for people with psychiatric and chronic illnesses, says Jean Hall, director of the Institute for Health and Disability Policy Studies at the University of Kansas. To alleviate this gap, Hall and her colleagues developed the National Survey on Health and Disability (NSHD), which allows respondents to describe and self-categorize their disability type. In a recent study she and her colleagues found that the ACS questions failed to identify nearly 20% of people who reported disabilities to the NSHD, and the WG-SS missed 43%. Switching to the WG-SS would mean “going from a measure that’s not great to one that’s much worse,” she says.

You can comment on this for about a month though:

The proposed change will be open for public comment until 19 December, although the National Advisory Committee, which advises the Census Bureau on policy and research issues, will discuss initial comments on 16 November. Landes hopes policymakers will listen to the voices of disabled Americans and not move forward with the change. “The power of the disability community is strong,” he says. 


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