Framing the activists: gender, race, and rhetorical disability in contested illnesses [ME/CFS & Long Covid], V. Jo Hsu, 2023

For the past five decades, patients with myalgic encephalomyelitis (ME) have struggled against the stereotype that their symptoms are “all in their heads.” With ME now appearing in roughly half the cases of long COVID (LC), some researchers and journalists have recycled old mythologies about ME.

This essay applies frame analysis to scientific and mainstream discourse surrounding ME and LC to ask how dominant scripts about disability, gender, and race constrain scientific and cultural growth in the context of contested diseases. Drawing from James Cherney’s work on ableist rhetoric, this essay examines how novel frames repackage staid assumptions that dismiss pain in people marginalized by race and/or gender.

ME and LC, as poorly-understood illnesses, provide illustrative case studies of how longstanding bias quietly fills argumentative gaps in scientific and popular discourse. Amid rapidly unfolding public health crises, rhetorical analyses provide crucial insight into how prejudicial beliefs get encoded into disciplinary and public deliberations.

Paywalled link (Quarterly Journal of Speech): https://www.tandfonline.com/doi/full/10.1080/00335630.2023.2291895

 

Too bad it's paywalled.

I like the phrase "longstanding bias quietly fills argumentative gaps in scientific and popular discourse."

I can visualize the bias spreading and coating the area, sliding into the gaps, like syrup on pancakes.

An enjoyable, sweet, filling, and reassuring meal, telling the so-called "mainstream" that there is no need to bother with pwME or LC, as it is entirely of their own making.

 

You can read the paper on this page for free. You have to scroll down the page a little to see the whole paper.

https://www.academia.edu/112434477/..._rhetorical_disability_in_contested_illnesses

This is a link to the author's website.

http://www.vjohsu.com/

 

Thank you @Laurie P

 

I also read the whole paper. It's a thorough, well-written explanation of how ME was stigmatized. The author affirms us and doesn't mince words.

 

This is a long article which I thought was very good and which with a big effort I managed to read. I doubt if many will do so in its entirety. So as we're now in 2024, I thought it might be helpful to use AI in the form of Claude.ai to summarise it. This may be useful for some although I feel it omits much of the backstory of the original by not mentioning the The Royal Free, Pace trial etc.. Reading the full article may still be preferable for those who can manage it and can cope with all the information.

Here's Claude.ai's summary:

- The article discusses how myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) has been persistently framed as a psychosomatic or psychiatric condition despite evidence that it is a physiological disease.
- ME/CFS, which causes debilitating fatigue and other symptoms after physical or mental exertion, has been dismissed as "hysteria" and its sufferers, who are disproportionately women, accused of exaggerating or feigning their symptoms.
- The author argues these dismissals rely on ableist assumptions that delegitimize the experiences of people with disabilities or mental illnesses. The stigma attached to psychiatric diagnoses has been used to discredit ME/CFS patients and advocacy.
- The article traces how the framing of ME/CFS as hysteria draws on sexist tropes of women as irrational, manipulative, and attention-seeking. This builds on a long history of pathologizing women's behaviors through hysteria diagnoses.
- Racist logics have also shaped hysteria as a white, middle-class phenomenon, excluding poor white women and women of color. ME/CFS patients have carried this racialized stigma.
- The article suggests ME/CFS dismissals perpetuate broader social inequities by framing challenges to power as irrational or suspect. Similar logics delegitimize activism around other issues like trans rights or racism.
- Overall, the article demonstrates how discriminatory logics persist despite shifting medical frames, providing a case study of how social biases become embedded in science and media.