New York University Center for Disability Studies (CDS)

Sly Saint

Sly Saint

Senior Member (Voting Rights)
Building a community of teaching, research, & activism about disability
In the spring of 2017, the NYU Senate’s Equity, Diversity and Inclusion Task Force approved a proposal for a cross-school Center for Disability Studies (CDS). The Center builds on ten years of activity of the NYU Council for the Study of Disability, funded by the Provost’s office since 2007. Faye Ginsburg (Anthropology/Faculty of Arts & Sciences) and Mara Mills (Media, Culture, and Communication/Steinhardt), who formerly directed the Council, are the current co-directors of the Center.

The Center promotes disability scholarship, artistry, and activism through: public events, a monthly seminar, an undergraduate Disability Studies Minor and Disability Student Union, and co-direction of the Provostial Working Group addressing issues on campus of Disability, Infrastructure and Accessibility.
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https://disabilitystudies.nyu.edu/

Emily Lim Rogers
I am a PhD candidate in the Program in American Studies at the Department of Social & Cultural Analysis at New York University. I’m also the administrator at the NYU Center for Disability Studies.
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I’m currently working on my dissertation, “Clinical Proximities: Chronic Fatigue Syndrome and the Remaking of Disease in the US,” an archival and ethnographic examination of the politics of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) in the United States. I look at social and historical formations of scientific uncertainty surrounding fatigue over the course of the 20th century, and ask how people with ME/CFS inhabit this space of uncertainty through the collective work of patient activism and in bodies that are exhausted. ME/CFS’s incomplete incorporation into the clinic allows a real-time window into a pivotal era of American biomedicine, made all the more urgent in the aftermath of COVID-19.
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https://www.emilylimrogers.com/
 
It seriously blows my mind every time I see it that disability studies are not part of or attached to medicine and that medicine basically pays no attention to it, is clearly almost entirely on the shoulders of disabled people in social sciences. Like it's a fringe topic. Which I guess it is.

It really says a lot, though. And then some.
 
rvallee said:
It seriously blows my mind every time I see it that disability studies are not part of or attached to medicine and that medicine basically pays no attention to it, is clearly almost entirely on the shoulders of disabled people in social sciences. Like it's a fringe topic. Which I guess it is.

It really says a lot, though. And then some.
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well the medical profession showed no real interest in pain until the late seventies. the first research pain clinic was opened in liverpool in 1980 . i think people constantly forget that medicine has always been about making money first and only centuries later when scientific methodology came into being did this profession start to improve based on the research of the times as i have said before the profession gets away with shoddy practice because there is no competition . also most patients have very little say in who they can see .
 
rvallee said:
It seriously blows my mind every time I see it that disability studies are not part of or attached to medicine and that medicine basically pays no attention to it, is clearly almost entirely on the shoulders of disabled people in social sciences. Like it's a fringe topic. Which I guess it is.
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Of course, because no one cares about the "social" part of biopsychosocial.
 
Snow Leopard said:
Of course, because no one cares about the "social" part of biopsychosocial.
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Well, it's pretty clear by now that most of what falls under "mental health" is actually socioeconomic hardship redefined to remove the pesky fact that it points towards inequality being the culprit. Definitely taboo given how obvious the solution is, especially with those UBI trials showing massive reductions in "mental distress", which is actually income insecurity and lack of access to basic resources. Though that largely has to do with purposefully ambiguous questions.

Also somehow the environment doesn't really count. I'm pretty sure pollution doesn't fall under biology and it's well-demonstrated that it causes millions of deaths per year and millions more cases of chronic illness, especially cardiovascular and respiratory illnesses. You know, just two of the most common causes of death, nothing especially important....

Environmental medicine is basically considered a non-issue, hardly anyone pays attention because it has too many industrial implications, and affects too much of rich people's yacht money. Meanwhile psychosomatics is always the hot fad, receiving far more interest. That alone is so representative of where things broke off, like a timeline split where we're on the wrong side.
 
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What Emily Lim Rogers is Thinking About Now
Time:
12:00pm - 1:00pm EDT
Sponsor:
Center for the Study of Race and Ethnicity in America (CSREA)
Location:
Zoom
Event Type:
Online only
Link:
Register to Attend
Cost:
Free

Whose Fatigue Matters? Long COVID and Longer Histories of Racialized Illness

Emily Lim Rogers, Mellon Postdoctoral Fellow in Disability Studies in the Department of American Studies, the Program in Science, Technology, and Society, and the Cogut Institute for the Humanities

Sudden interest in post-viral illness during the COVID-19 pandemic has obscured longer histories of chronic illness, including decades of disinterest in chronic fatigue syndrome, also known as myalgic encephalomyelitis or ME/CFS. This exploratory talk presents a longer history of the radicalization of fatigue to discuss the ambivalences that have emerged in this new “wave of disability.”
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https://events.brown.edu/public-health/event/227485-what-emily-lim-rogers-is-thinking-about-now
 
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Biomedicine’s Binds: ME/CFS, Patient Sociality, and Attachments to Science in Suicide’s Shadow
Tuesday, November 1, 2022
Olin, Room 102
5:00 pm – 6:30 pm EDT/GMT-4
Emily Lim Rogers, Mellon Postdoctoral Fellow in the Department of American Studies, the Program in Science, Technology, and Society (STS), and the Cogut Institute for the Humanities at Brown University
This talk explores the double binds that are created when debilitating chronic symptoms remain unverifiable in Western biomedicine. Chronic fatigue syndrome (also known as myalgic encephalomyelitis or ME/CFS) is a disabling condition that has no treatments. Its unrelentingness means suicide is the leading cause of death. Drawing on four years of online and in-person fieldwork with American ME/CFS activists, I show how vital social groupings bind patients together despite the significant isolation ME/CFS causes. Yet at the same time, the bureaucratic and biomedical systems they aim to navigate are inherently exhausting and repeatedly exclude them, creating double-binds for patients with already-limited energy: the systems they rely on are also the systems that wear them out. Debility blocks the very means through which debility might end.
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https://www.bard.edu/inside/calenda...and-attachments-to-science-in-suicides-shadow
 
It would be interesting to see the data, but unfortunately it doesn’t seem at all intuitively implausible to me. Especially not if the data comes from a country with very high rates of gun ownership.
 
Shadrach Loom said:
It would be interesting to see the data, but unfortunately it doesn’t seem at all intuitively implausible to me. Especially not if the data comes from a country with very high rates of gun ownership.
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US suicide rates are not exceptionally high by international standards, although they double that of the UK (List of countries by suicide rate) however a key feature of the US data is the gender differential with regard to the use of firearms as method: Adjusted Suicide Rates - given that differential is opposite to that usually stated from ME/CFS prevalence it seems unlikely to be a substantial factor in high rates of suicide amongst PwME in the US.

Apart from being unnecessarily alarmist, I find the quote re: leading cause of death problematic because it seems to rely on a picture of the ME/CFS patient population that is grossly at variance with the population as a whole, something for which there is no evidence. As far as anyone knows, life expectancy of PwME is not grossly a variance with the general population and it's therefore reasonable to suggest that mortality in PwME follows similar patterns to the general population with causes of death featuring in common proportion.

If we use the UK population for comparison, the suggested range of the ME/CFS patient population is 125,000 to 250,000 and the UK 2020 death rate was 10.3 per 1,0000 - therefore unless ME/CFS involves a substantially higher or lower mortality rate we should expect UK deaths of PwME to run at around 1,250 to 2500 per year.

The leading causes of death in the UK are ischaemic heart disease, cerebrovascular disease, dementia and Alzheimer's, and cancer, with dementia and Alzheimer's topping this list for females at around 16% of all deaths of females, and ischaemic heart disease for males at around 13% of all male deaths. Taking the 16% d&A as representative of the UK patient ME/CFS population then the expected leading cause of death(dementia/Alzheimer's) would run at between 200 and 400 per year; matched against that a population standard rate of suicide of between just 9 and 18 cases per year would be expected. For the statement "suicide is the leading cause of death in ME/CFS to be true in the UK somewhere between 3 and 6% of all UK suicides every year would have to be of PwME - allowing for the far higher number of females with ME/CFS, the gender specific figure would be 12 - 24% of all female suicides in the UK, because the female suicide rate is barely a quarter that of males.

These numbers just don't seem credible - a quarter of UK female suicides involving ME/CFS patients would be noticed - not least by those who want to psychologise ME/CFS.
 
CRG said:
US suicide rates are not exceptionally high by international standards, although they double that of the UK (List of countries by suicide rate) however a key feature of the US data is the gender differential with regard to the use of firearms as method: Adjusted Suicide Rates - given that differential is opposite to that usually stated from ME/CFS prevalence it seems unlikely to be a substantial factor in high rates of suicide amongst PwME in the US.

Apart from being unnecessarily alarmist, I find the quote re: leading cause of death problematic because it seems to rely on a picture of the ME/CFS patient population that is grossly at variance with the population as a whole, something for which there is no evidence. As far as anyone knows, life expectancy of PwME is not grossly a variance with the general population and it's therefore reasonable to suggest that mortality in PwME follows similar patterns to the general population with causes of death featuring in common proportion.

If we use the UK population for comparison, the suggested range of the ME/CFS patient population is 125,000 to 250,000 and the UK 2020 death rate was 10.3 per 1,0000 - therefore unless ME/CFS involves a substantially higher or lower mortality rate we should expect UK deaths of PwME to run at around 1,250 to 2500 per year.

The leading causes of death in the UK are ischaemic heart disease, cerebrovascular disease, dementia and Alzheimer's, and cancer, with dementia and Alzheimer's topping this list for females at around 16% of all deaths of females, and ischaemic heart disease for males at around 13% of all male deaths. Taking the 16% d&A as representative of the UK patient ME/CFS population then the expected leading cause of death(dementia/Alzheimer's) would run at between 200 and 400 per year; matched against that a population standard rate of suicide of between just 9 and 18 cases per year would be expected. For the statement "suicide is the leading cause of death in ME/CFS to be true in the UK somewhere between 3 and 6% of all UK suicides every year would have to be of PwME - allowing for the far higher number of females with ME/CFS, the gender specific figure would be 12 - 24% of all female suicides in the UK, because the female suicide rate is barely a quarter that of males.

These numbers just don't seem credible - a quarter of UK female suicides involving ME/CFS patients would be noticed - not least by those who want to psychologise ME/CFS.
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Hmm. Neatly argued, but I wonder if the ME gender disparity is doing a little bit too much work there? I really want to put all this on a spreadsheet to model it out properly and that will have to wait until I am on a real computer.

It feels as if the claim would be unproblematic if it was “the leading cause of premature death”, and it wouldn’t be surprising if that was then misquoted. And maybe that’s the kind of stat that I was intuiting as plausible without considering the likely causes of mortality in senescence.

@CRG - after a bit of ONS data and Excel wrangling I concur with all your extrapolations. That level of suicide among FwME would represent a massive and immediately visible increase, even if it was adjusted for premature deaths, while among MwME it would pass unnoticed in either ME or suicide stats.

I wrote something longer with all the numbers, if anyone is interested, but deleted as too depressing/boring/triggering to be worth posting.
 
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