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It'sME(Jaime) Profile picture
@exceedhergrasp1
Oct 30 • 14 tweets • 4 min read Twitter logo Read on Twitter
#Disability rates have skyrocketed in the United States in the wake of #COVID, with infection-associated chronic illnesses like #MECFS, #POTS, & #MCAS surging.  US Census figures currently report that 14% of Americans are now disabled. (1/7) 🧵
Rather than address the growing crisis of an ongoing pandemic, not to mention those already disabled, the US Census is responding by changing the definition of disability.

And if they do so, the rate of disability as identified by the Census is slated to drop to 8%. (2/7)
Dr. Bonnie Swenor, Director of the Johns Hopkins Disability Health Research Center, says, "These changes have moved forward w/o the input of the disability community & have far-reaching, negative implications for disabled people..." (3/7)
"As disabled scholars & scholars of disability data, we are concerned with the limited empirical evidence to support these changes to the Census disability data collection methodology. We are asking the Census to stop efforts aimed at changing disability data collection." (4/7)
WHAT YOU CAN DO:

✨Submit a public comment to the Census National Advisory Committee Meeting before November 16th:
✨Respond to the current Federal Register request for comment before December 19th: (5/7)census.gov/about/cac/nac/…
federalregister.gov/documents/2023…
Disability advocates & researchers are also asking the Census to:
✨Make a plan to improve the inclusion of disabled people across the activities of the US Census Bureau
✨Support forming a National Taskforce on Disability Data to improve & expand disability data collection (6/7)
Please share widely with your networks! Thank you. (7/7)
For additional information you can use, check out the disability researchers' sample letter here:

Alt text continues in the follow-up tweets.


October 18, 2023 Robert L. Santos Director, U.S. Census Bureau U.S. Department of Commerce Dear Director Santos: We are writing with concern over proposed changes to questions assessing disability status within the U.S. Census. As a group of demographers, sociologists, physicians, policy analysts, and epidemiologists with expertise in disability data and lived experience as people with disabilities, we have closely followed efforts at the U.S. Census to change the disability questions. We are in stark disagreement with the proposed switch from the six disability questions used in the Americ...
“Does the Committee have recommendations regarding how to engage key stakeholders to help communicate with data users about the upcoming change to the ACS disability question set?”. The only response to this question provided by the CSAC discussant, Dr. Barbara Entwisle, was for this “change and likely consequences be communicated widely to stakeholder groups” after the switch to the WGSS is made. This implies that the approach is to change the U.S. Census disability data questions from the ACS to the WGSS and then attempt to gather support from the disability community on the back end. Thi...
scientific decisions when considering designating people with disabilities as a ‘health disparity population’. There was a fast and overwhelming response from the disability community. The NIH quickly recognized the impact of the exclusion of disabled people and scholars, as it can yield biased and socially harmful interpretations of data. The designation was ultimately provided but not before receiving much public attention from within and outside the disability community. President Biden even lauded this advocacy effort and designation during his speech to celebrate the 50th anniversary o...
estimates than the ACS questions. But there was no discussion of this change's ramifications on disabled people or on “local planning, policy implementation, business development, health monitoring, and research”. Further, unlike the ACS questions, the WGSS uses a scaled response of functional difficulty, ranging from ‘none’ to ‘a lot of difficulty’. The societal implications of this scaled response must be considered, as disabled scholars and community members have flagged their potential to deepen hierarchical views of disability and support biased resource allocation to only those with m...
The alt text from the letter continues below: the Office of the National Coordinator of Health Information Technology (ONC) for use in electronic health records (EHR), and are being rolled out at state levels, such as Oregon. We request that the U.S. Census Bureau not proceed with this change from the ACS to the WGSS disability questions. Instead, we ask that the U.S. Census Bureau: Make a plan to improve the inclusion of disabled people across the activities of the U.S. Census Bureau. In accordance with the Executive Order on Diversity, Equity, Inclusion, and Accessibility (DEIA), the U.S. Census Bureau should be reporting the composi...
The alt text from the letter continues below: We further believe that disabled scholars with expertise in disability data should be integral to all U.S. Census efforts to develop, implement, and use disability data. Support forming a national task force to develop a plan for improving and expanding disability data collection across the federal government. While disability measurement has particular relevance to the activities of the U.S. Census Bureau, unaddressed limitations of these measures have implications for all federal agencies and offices. A national task force could holistically address the long-standing challenges with disab...
The alt text from the letter continues below: (2) create a roadmap to roll out a comprehensive and integrated plan to collect disability data as a core demographic component across the federal government, including the U.S. Census Bureau; and (3) outline a comprehensive strategy for using this data to advance equity for disabled people, including making these data publicly available and accessible. Similar task forces have been developed out of the White House Office of Science and Technology Policy (OSTP), and these goals support recommendations from the National Science and Technology Council Equitable Data Working Group. Thank you f...
The letter is signed by Bonnielin K. Swenor, PhD, MPH
Scott D. Landes, PhD
Jean P. Hall, PhD
Eric A. Lauer, PhD, MPH
Monika Mitra, Ph.D.
Nancy Lurie Marks
Maggie R. Salinger, MD, MPP, MPH
Margaret A. Turk, MD
For additional information re: HOW the disability questions have been altered-- and how reducing the number of individuals who qualify as disabled appears to be part of the motivation-- see here: www2.census.gov/about/partners…
Perhaps needless to say, but this is part of an ongoing effort to hide the consequences of the pandemic— and of ongoing/worsening healthcare inequity in general. Read this thread.

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More from @exceedhergrasp1

It'sME(Jaime) Profile picture
Oct 31
Excellent news! #CDC has a new page on infection-associated chronic sequelae. Of particular import: these chronic symptoms linger "even after appropriate treatment". 🧵 (1/4)
Some highlights:
✨Lists pathogens known to lead to chronic issues, inc. COVID, Borrelia, EBV
✨Talks about how some symptoms are specific to pathogen, others are common to many infection-associated chronic illnesses
✨Lampshades #MECFS multiple times in the article (2/4)
Highlights, cnt'd
✨Common-language etiology section that outlines a very complex picture very clearly
✨Mentions that everyday testing may not show anything but this does not mean symptoms aren't impairing
✨Lists their current projects (could be more/better, but still) (3/4)
Read 5 tweets
It'sME(Jaime) Profile picture
Oct 7
Overjoyed to announce my Concise Clinical Review of ME/CFS in Mayo Clinic Proceedings (with updated diagrams!) Very glad to have worked with @GrachStephanie and Ravi Ganesh and Tony Chon on this! 🧵#MedEd #MedTwitter mayoclinicproceedings.org/article/S0025-…
A concise clinical review is limited to a specific word count and a specific citation count, so we did our best to include the most vital information for diagnosis and treatment of #MECFS. (2/)
Concise clinical reviews are also a way to offer CME credit. Medical providers can take the free CME by reading the paper carefully and then answering the case-based questions that follow. #MedEd (3/) mayoclinicproceedings.org/article/S0025-…
Read 8 tweets
It'sME(Jaime) Profile picture
Sep 26
Excellent, actually, from the RECOVER Mechanistic Taskforce: . 🧵elifesciences.org/articles/86043
"We... emphasize the need to build on and complement, rather than merely repeat, existing research from similar conditions, such as #MECFS, #Lyme disease, #dysautonomia..." (2/)
"Further exacerbating PASC’s time pressure is the NIH’s historic underfunding of overlapping illnesses with potential post-viral origins that have extremely similar phenotypes to #LongCOVID (Komaroff, 2019). If research for diseases such as #MECFS... (3/)
Read 11 tweets
It'sME(Jaime) Profile picture
Sep 25
Let's talk about the UK's Science Media Centre and its history.

The Centre calls itself "an independent press office for science, working closely with press officers from universities, scientific companies, research funders &leading science and engineering institutions."
The SMC is a publicly-funded PR group, representing influential corporations whose financial interests are threatened by the interests of the public.

Connie St. Louis, then president of the Association of British Science Writers, said: "Perhaps the greatest tragedy, or item of public interest, has been the complicity of successive scientifically illiterate UK governments, which have donated nearly half a million pounds of public funds to this dishonest endeavor." -- St. Louis, source: https://archives.cjr.org/the_observatory/science_media_centers_the_pres.php
St. Louis performed a study on SMC. Over half the SMC’s "expert reactions" were covered in the press and "in 23% of the stories... the only quotes were those that came from the centre."

“Whatever the SMC delivered to them is what they used,” she said. tinyurl.com/2hhf562n
Read 25 tweets
It'sME(Jaime) Profile picture
Sep 5
Baffling decision by @NIH's National Institute on Minority Health and Health Disparities (@NIMHD): disabled people don't "count" as a minoritized population with greater health disparities than able-bodied folks.

They explained their decision by... (1/4) 🧵
...stating that disabled people don't always face inequities.

An unusual claim, since multiple studies have found & documented such inequities and disparities.

The NIH Working Group for Individuals with Disabilities Appendix C has the receipts: (2/3) acd.od.nih.gov/documents/pres…
No one on the committee making the decision that disabled people are not a population that faces healthcare inequities identified themselves as a person living with a disability.

This is why we say, "nothing about us without us." (3/4)
Read 8 tweets
It'sME(Jaime) Profile picture
Mar 17
THIS IS A BIGGER DEAL THAN MOST PEOPLE REALIZE.

Awhile back, I made a post about the Wayback Machine.

The Wayback at the @internetarchive allows folks to see documents as they used to be on the internet-- even if subsequently deleted or censored. 🧵 Image
The Wayback Machine is vital for advocacy. We can see what our government said in the past, and compare to what they're saying today.

As part of our ongoing slide into regressivism, we're erasing history. Erasing the knowledge that things can be better, that they once were. (2/)
Reams and reams of fiction are only available through the Wayback, particularly those by LGBTQ+ authors, due to another attack on free fiction by queer authors when Livejournal was "deleted and purged". (3/)
Read 4 tweets

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