Lived experience as a source of knowledge. What has the room been through? What do participants already know from the inside?
See the pedagogy document for what this lens does across all themes.
In most themes this lens has to work to surface the room’s experience. Here it will not need much. Everyone has a body, everyone has been treated or refused, and most people have a story about being disbelieved. That story is the theme’s best material and the room already has it.
Two cautions, and they matter more here than anywhere else in this school. Nobody owes the room their suffering. A person who is fat, sick, disabled, or grieving is not a teaching aid, and a facilitator who turns to them expectantly has done a small version of the thing this theme is about. And being disbelieved is the through-line: it is what Serena Williams describes, what Aubrey Gordon describes, what half the ACT UP interviews describe. If the room surfaces nothing else, surface that.
Anchor questions
Sample prompts. Adapt to your room, and see the facilitator guide. Let people pass.
- Have you ever told a doctor what was wrong with you and been wrong about being right? What happened?
- Have you not gone, because of the cost, or the wait, or what you knew they would say? What did you do instead?
- Has your body ever been discussed in front of you as though you were not there?
- Who in your life does the care work, and what does it cost them?
- Did you lose someone in the pandemic? Do you know why it was them?
- What do you not tell a doctor, and why?
Materials that may help
All free unless marked otherwise. Lead with Hedva or Johnson; both are short and both reframe the room.
Theory written from inside the body
- Johanna Hedva, Sick Woman Theory (2016). Written from bed, during a period Hedva could not leave it, and it turns that position into an argument: the sick woman is whoever a world has decided is not worth keeping well, and what is expected of her is that she disappear quietly. The single best short reading in this theme. Free: topicalcream.org
- Harriet McBryde Johnson, Unspeakable Conversations (2003). A disabled lawyer travels to Princeton to debate a philosopher who argues that a life like hers might reasonably be ended, and files a piece that is funny, precise, and completely unmoved. If the eugenics lens raises the question of whose life counts, this is a person the question was asked about, answering it. Free: nytimes.com
- Audre Lorde (1934 to 1992), The Cancer Journals (1980). Her mastectomy, her refusal of the prosthesis, and her account of being asked to look normal so that other people would not have to think about cancer. The founding text of writing illness as politics. No borrowable copy exists. Paywalled: auntlute.com
Being disbelieved
- Serena Williams, What my life-threatening experience taught me about giving birth (2018). She tells the staff exactly what is happening to her. They do not believe her. She is right, and she nearly dies of it. She is also one of the most famous athletes on earth, which is the point: it did not help. Free: cnn.com
- Aubrey Gordon, 10 Things Health Care Providers Can Do to Better Treat Their Fat Patients (2020). Nearly a decade of not going, because nearly every doctor made clear that the body was the problem and the complaint was a symptom of it. Behind Medium’s member wall, which is worth saying plainly; if the room cannot get it, Harrison’s free excerpt in the theoretical lens does related work. Paywalled: elemental.medium.com
Archives of people speaking for themselves
- ACT UP Oral History Project (Sarah Schulman and Jim Hubbard). 187 long interviews with surviving ACT UP New York members, free, with full transcripts, which makes them assignable as readings. People who were told they would die and organized instead, telling it themselves. The richest thing in this lens. Free: actuporalhistory.org
- Disability Visibility Project (Alice Wong, StoryCorps). Disabled people recording their own oral histories, on a project built so the record would not be made about them by someone else. Free: archive.storycorps.org
- All Our Voices (StoryCorps). Illness, caregiving, and dying, recorded by people who are not writers. Free: archive.storycorps.org
- A Journal of the Plague Year (Arizona State University). COVID in the first person, collected while it happened. Read it against the occupational mortality figures in the theoretical lens: those numbers were these people. Free: covid-19archive.org
A note on method
The disbelief is the finding. A room will produce a dozen stories about not being listened to, and the temptation is to treat them as anecdotes on the way to the real material. They are the real material. Every structural claim in this theme, that some bodies are priced lower, that health was built as the antithesis of Blackness, cashes out as somebody in an examining room not being believed about their own body. Let the room notice that its stories are patterned before the theory tells them so.
Status
First pass, and it may be a while before there is a second. Named gaps: fat people’s own medical accounts are thin here and the best one is paywalled, which in a theme anchored on anti-fatness is a real weakness. Black maternal health testimony beyond Serena Williams is missing, and she is the most famous possible case rather than the most typical. Nothing here is from outside the United States. Contributions welcome, especially from disabled and fat organizers, and from health workers on what the job does to them.