Lesbian AIDS: An Illness of One’s Own?, 2025, Rogers

Dolphin

Dolphin

Senior Member (Voting Rights)
Paywall:
Signs: Journal of Women in Culture and SocietyVolume 51, Number 1

Lesbian AIDS: An Illness of One’s Own?​

Emily Lim Rogers

Abstract

This article examines the term “lesbian AIDS” as a lens to explore contested definitions of lesbian identity, community, and illness during the AIDS crisis (1989–99). Drawing on lesbian archives and chronic illness narratives, it investigates how chronic fatigue syndrome and related conditions were politicized in relation to AIDS, reflecting competing frameworks of illness and identity. The article analyzes how these debates shaped activism, ranging from separatism to coalitional organizing, and offers lessons for contemporary health movements, including long COVID advocacy.
 
It's hard to know exactly where this paper is going from the abstract, and if it's a helpful direction.

Certainly, the characterisation of the AIDS crisis as being only about homosexual men would be inaccurate. I found this commentary that seemed relevant:
On July 3rd, 1981, the New York Times quietly reported of a “Rare Cancer seen in 41 Homosexuals.” Early news coverage of the AIDS crisis, like the below 1983 article “Homosexuals Confronting a Time of Change,” characterized AIDS as a disease of only gay men, highlighting what was seen to be “differences in styles of life for homosexual men and women.” Even today, lesbians are frequently characterized only as the nurses of the AIDS crisis, remembered only for the role they played in caring for gay men. Though medical caretaking was a huge part of lesbian AIDS activism, this characterization erases the direct impact AIDS had on lesbian communities.
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Lesbians did die of AIDS. In 1991, about forty percent of HIV-positive individuals and twelve percent of AIDS patients were women. The definition of AIDS used by the Centers for Disease Control and Prevention (CDC), however, was skewed towards men’s experience with the disease, failing to recognize opportunistic infections that commonly affected women with AIDS, like Pelvic Inflammatory Disease and cervical cancer. As a result, 65% of HIV-positive women died without ever being diagnosed with AIDS. These women, suffering and sick, were ineligible for vital healthcare provided by the Division of AIDS services, like at-home nursing attendants. The CDC’s exclusionary definition led to intense medical misogyny: clinical trials for developing HIV/AIDS treatments excluded “pregnant and non-pregnant” women. This case aims to uncover the critical role lesbians played in the AIDS crisis. Lesbians were caretakers, activists, lawyers, protestor, artists, and historians. They were everywhere.
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A suggestion that AIDs was not and is not a female disease also ignores the huge and ongoing impact on whole communities, both males and females, in poorer countries.

I'm rather uncomfortable with the title of the paper, suggesting as it does that chronic fatigue syndrome could be the 'female equivalent of AIDS', with an almost volitional aspect. As in, choosing to have 'a room of one's own' and 'an illness of one's own', perhaps because others are getting attention.
abstract said:
Drawing on lesbian archives and chronic illness narratives, it investigates how chronic fatigue syndrome and related conditions were politicized in relation to AIDS, reflecting competing frameworks of illness and identity.
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But, it sounds interesting and, as I said, it's hard to know where the paper is going. We have talked before about whether the AIDS crisis has some lessons for ME/CFS advocates.


Perhaps someone with access to the paper can tell us if there is information we should be know or ideas we should be thinking about here?
 
The author has written about ME/CFS previously. See

Dakota15

Post in thread 'News from the USA, United States of America'

Public Books: 'Will “Care” Save Us?'

By Emily Lim Rogers

"It revealed the devastating free fall caused by a vacuum of care. Consequently, anyone writing about bodies, care, disability, and medicine over the last four years seemed compelled to answer the question: “What about COVID? For that matter, what about long COVID?”

While the CDC has acknowledged its existence for four decades, myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) reached new prominence in the aftermath of COVID-19. The virus is causing syndromic postviral illness at massive scale, with many cases of...
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Dolphin

Thread '“When postviral goes viral”. Chapter in “How to be disabled in a pandemic” book'

Kornstein H, Rogers EL.
When postviral goes viral.
How to be disabled in a pandemic [Book].
New York Univ Press. 2025 Feb 25:191.

https://nyupress.org/9781479830855/how-to-be-disabled-in-a-pandemic/

https://books.google.com/books?id=o...n+Postviral+Goes+Viral"&redir_esc=y#v=onepage
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Kalliope

Thread 'A Syndrome in Search of a Virus - ME/CFS, Disease Paradigms, and the Social Function of Pathogens, Emily Lim Rogers, 2024'

Journal: Osiris

Abstract

In 1984, a team of American researchers led by Robert Gallo announced that HIV causes AIDS. Seven months later, the US Centers for Disease Control investigated a postviral illness of unknown cause, which would later be known as chronic fatigue syndrome (aka myalgic encephalomyelitis, or ME/CFS).

This article argues that ME/CFS’s emergence was entangled with HIV/AIDS. Once the cause of AIDS was widely agreed upon by the 1990s, the virus-to-syndrome model became the predominant paradigm for understanding syndromic diseases of as-yet unknown...
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Kalliope

Thread 'Cogut Institute for the Humanities, Brown University - Emily Lim Rogers: Unraveling the Knot of Myalgic Encephalomyelitis (Chronic Fatigue Syndrome)'

A Q&A with Emily Lim Rogers who is a teacher and has a current research project about ME, "probing what scientific uncertainty about the illness reveals about the fraught gendered and racialized dynamics that determine who is considered ill and examining the uneven uptake of debility in the sociocultural contacts of the United States".

Emily Lim Rogers: Unraveling the Knot of Myalgic Encephalomyelitis (Chronic Fatigue Syndrome)

quote:

ME/CFS remains “incompletely medicalized,” by which I mean things are missing or spotty at four levels. First, there is clinical practice: people...
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Sly Saint

Thread 'New York University Center for Disability Studies (CDS)'

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...
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Dolphin

Thread 'Staying (at Home) with Brain Fog: “Un-witting” Patient Activism, 2020, Emily Lim Rogers (on ME/CFS)'

Free full text:
http://somatosphere.net/2020/staying-home-brain-fog-patient-activism.html/

October 5, 2020
Staying (at Home) with Brain Fog: “Un-witting” Patient Activism
By Emily Lim Rogers
This article is part of the series: Reworking the Cognitive Bias
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http://somatosphere.net/2020/staying-home-brain-fog-patient-activism.html/

Science, Medicine, and Anthropology
A collaborative website covering the intersections of medical anthropology, science and technology studies, cultural psychiatry...
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Jonathan Edwards said:
I see the connection between ME/CFS and AIDS as best forgotton. It gave rise to 'CFIDS', XMRV, ICC criteria and a myth of immunodeficiency. I see words like 'biosocial' and 'cultural psychiatry' here that also don't look helpful.
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The connection is not about the disease process, pathology or anything like it. It's the social dynamics and systemic discrimination that condemn people to a shorter, miserable life. On this they are quite similar, and they reflect completely opposite paths: what happens when necessary advocacy in ending discrimination against a disease works out, vs when it's so thoroughly crushed that even an event like Long Covid doesn't even move the needle one tiny bit.

The AIDS movement was just as reviled as we are at the beginning, but eventually science worked out enough to make people afraid of it, even though the facts of it didn't change. Eventually it was understood that any contact with infected blood could doom people to the same fate, something health care professionals face every single day. I think it was even made into law that HIV+ status had to be declared in some places. This made them share in the stakes, whereas with us no one feels that it could happen to them.

We're still on the other side of this. Ironically even though it is definitely a real problem that any health care professional could face total life destruction from a simple infection, but they don't believe in it, so even though the threat is real, they simply ignore it. Even though the awful reaction to COVID has made this an even bigger threat, by essentially ending most infection control, even encouraging infections as good for health.

The main lesson from the AIDS crisis was pretty much: crush discriminated patient movements hard, make them so unpopular that no one will even think of helping them. Its success hasn't been repeated since. Long Covid was as perfect a test of this as it gets, and it was 100% botched for all the wrong reasons.
 
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