Notes

1. On illness and disability politics, see, for example, Eli Clare, Brilliant Imperfection: Grappling with Care (Durham, N.C.: Duke University Press, 2017); Johanna Hedva, “Sick Woman Theory,” Mask Magazine (January 19, 2016); Shayda Kafai, Crip Kinship: The Disability Justice and Art Activism of Sins Invalid (Vancouver: Arsenal Pulp Press, 2021); Alison Kafer, Feminist, Queer, Crip (Bloomington: Indiana University Press, 2013); Akemi Nishida, Just Care: Messy Entanglements of Disability, Dependency, and Desire (Philadelphia: Temple University Press, 2022); Leah Lakshmi Piepzna-Samarasinha, Care Work: Dreaming Disability Justice (Vancouver: Arsenal Pulp Press, 2018); Jasbir Puar, The Right to Maim: Debility, Capacity, Disability (Durham, N.C.: Duke University Press, 2017); Ellen Samuels, Fantasies of Identification: Disability, Gender, Race (New York: NYU Press, 2014); Sami Schalk, Black Disability Politics (Durham, N.C.: Duke University Press, 2022); and Alice Wong, ed., Disability Visibility First-Person Stories from the Twenty-first Century (New York: Vintage, 2020).

2. On the visual culture of health and medicine, see, for example, Olivia Banner, Communicative Biocapitalism: The Voice of the Patient in Digital Health and the Health Humanities (Ann Arbor: University of Michigan Press, 2017); Lisa Cartwright, Screening the Body: Tracing Medicine’s Visual Culture (Minneapolis: University of Minnesota Press, 1995); Lester Friedman and Theresa Jones, eds., Routledge Handbook of Health and Media (New York: Routledge, 2022); Emma Bedor Hiland, Therapy Tech: The Digital Transformation of Mental Healthcare (Minneapolis: University of Minnesota Press 2021); Kirsten Ostherr, Medical Visions: Producing the Patient through Film, Television, and Imagining Technologies (New York: Oxford University Press, 2013); Clive Seale, Media and Health (London: Sage, 2002); and David Serlin, Imagining Illness: Public Health and Visual Culture (Minneapolis: University of Minnesota Press, 2010). On media and health activism, see Gregg Bordowitz, The AIDS Crisis Is Ridiculous and Other Writings, 1986–2003 (Cambridge, Mass.: MIT Press, 2006); and Marika Cifor, Viral Cultures: Activist Archiving in the Age of AIDS (Minneapolis: University of Minnesota Press, 2022).

3. There are many hashtags connected to, or variations on, the hashtags I discuss here—for example, #HillarysHealth, #SummerOfADAPT, and #MillionsMissing. There are also many, many other hashtags that have generated disability and illness politics in the last several years—#SaveMedicaid, #SaveTheADA, #IAmAPreexistingCondition, #AbleismExists, #DisabilitySolidarity, #DeafInPrison, #AccessIsLove, to name just a few.

4. Elizaabeth A. Povinelli, Economies of Abandonment: Social Belonging and Endurance in Late Liberalism (Durham, N.C.: Duke University Press, 2011), 30.

5. Kafai, Crip Kinship, 93. Kafai cites Mia Mingus’s Leaving Evidence blog, which asserts on its opening page, “We must leave evidence. Evidence that we were here, that we existed, that we survived and love and ached,” https://leavingevidence.wordpress.com. See also the conversation between Mingus and Alice Wong on leaving evidence that Kafai also cites, “Disability Visibility Project: Mia Mingus, Part 3,” August 23, 2014, https://disabilityvisibilityproject.com/2014/09/27/disability-visibility-project-mia-mingus-alice-wong-3/.

6. Sarah J. Jackson, Moya Bailey, and Brooke Foucault Welles, #Hashtag Activism: Networks of Race and Gender Justice (Cambridge, Mass.: MIT Press, 2020), xxxii.

7. Malcolm Gladwell, “Small Change: Why the Revolution Will Not Be Tweeted,” The New Yorker, September 27, 2010, https://www.newyorker.com/magazine/2010/10/04/small-change-malcolm-gladwell.

8. Gladwell.

9. Gladwell really shows his cards at the end of “Small Change,” when he sets up what we might call a straw-activist as a contrast to those who risked their lives to participate in the sit-ins and voter-registration campaigns in the South in the 1960s. Gladwell discusses a story in Clay Shirky’s Here Comes Everybody: The Power of Organizing without Organizations (New York: Penguin, 2009), in which someone working on Wall Street uses social media to recover their phone that had been found/stolen by a teenage girl. Gladwell portentously writes that Shirky “portentously” asks “What happens next?” And he ends his essay with this glib answer: “What happens next is more of the same. A networked, weak-tie world is good at things like helping Wall Streeters get phones back from teen-age girls. Viva la revolución.”

10. Kafai, Crip Kinship, 126.

11. Hedva, “Sick Woman Theory.” Hedva’s essay can still be found circulating online, although the original link at maskmagazine.com is no longer available.

12. Hedva, “Sick Woman Theory”; Hannah Arendt, The Human Condition (Chicago: University of Chicago Press, 1958).

13. Hedva, “Sick Woman Theory”; Judith Butler, Notes toward a Performative Theory of Assembly (Cambridge, Mass.: Harvard University Press, 2015).

14. Piepzna-Samarasinha, Care Work.

15. In 2021, Patrisia Macías-Rojas, along with Akemi Nishida and Ronak Kapadia, organized a series of Zoom conversations on the topic of “The Reciprocal Politics of Bed Space Activism: From Confinement to Radical Care” as part of the Humanities Without Walls project at the University of Illinois at Chicago Institute for the Humanities. In her introduction to the first conversation and series, Macías-Rojas mentioned AIDS activist and filmmaker Marlon Riggs and disability activist and writer Stacey Park Milbern as activists who did significant work from their beds. See also Nishida, Just Care, which includes a chapter on bed activism that draws on work by Hedva, Piepzna-Samarasinha, and Gloria Anzaldúa, among others, to explore “not only conventional activism that disabled and sick people engage in from their beds (e.g., joining protests via the internet), but also bed-born wisdom and dreams emerging in the middle of bed dwellers’ moments of enduring pain, fatigue, depression, and other bodymind conditions,” 39.

16. Piepzna-Samarasinha, Care Work, 17.

17. Piepzna-Samarasinha, 19.

18. Piepzna-Samarasinha, 181. For a discussion of Anzaldúa’s work as an expression of sickness and pain, see Suzanne Bost, Incarnación: Illness and Body Politics in Chicana Feminist Literature (New York: Fordham University Press, 2009).

19. Piepzna-Samarasinha, Care Work, 182.

20. Along with Jackson, Bailey, and Welles, see also Zeynep Tufekci, Twitter and Tear Gas: The Power and Fragility of Networked Protest (New Haven, Conn.: Yale University Press, 2017). In Viral Cultures, Marika Cifor discusses the circulation of images of AIDS activism on online platforms like Tumblr. She acknowledges (206) the problem of the commodification, decontextualization, and depoliticization when images of activism circulate, but also argues that GIFs can and have been used as a form of activist illness politics. As one example, she mentions the Undetectable Collective’s Tumblr site, which became a space for making and collecting animated GIFs to counteract stigma and generate conversation around HIV/AIDS.

21. Samuels, Fantasies of Identification, 121.

1. Frank Newport et al., “‘Email’ Dominates What Americans Have Heard about Clinton,” Gallup.com, September 19, 2016, https://news.gallup.com/poll/195596/email-dominates-americans-heard-clinton.aspx. In their coverage of the coverage of the Clinton and Trump campaigns, Newport et al. note that, “Though Clinton has attacked Trump on several issues related to his character, no specific words representing negative traits have ‘stuck’ to Trump the way the word ‘email’ has to Clinton.” It’s fascinating that in this coverage of the coverage of the candidates at this stage of the campaign, no mention is made of the WikiLeaks release of emails. It is highly likely that the curated sharing of specific emails from the Democratic National Convention trove also increased the dominance and stickiness of the word email to Clinton.

2. Andrew Marantz, “Trolls for Trump,” The New Yorker, October 24, 2016, https://www.newyorker.com/magazine/2016/10/31/trolls-for-trump.

3. Marantz.

4. Marantz.

5. Matthew Boyle, “Choke Artist: Hillary Clinton Has Yet Another Coughing Fit on Plane Ride from Ohio to Iowa,” Breitbart.com, September 5, 2016, https://www.breitbart.com/politics/2016/09/05/choke-artist-hillary-clinton-yet-another-coughing-fit-plane-ride-ohio-iowa/.

6. In one example of Trump’s illness politics against Clinton, and its amplification in right-wing media, The Gateway Pundit, a notorious far-right news site, on October 15, 2016, published a brief article by the site’s founder Jim Hoft with the title “Donald Trump Challenges #SickHillary to Drug Test before Debate!,” https://www.thegatewaypundit.com/2016/10/donald-trump-challenges-sickhillary-drug-test-debate/. After noting that, “Donald Trump spoke to a HUGE audience today in New Hampshire” (emphasis in original), Hoft writes, “The GOP nominee questioned why Hillary Clinton needs so many days off from campaigning each month?” Trump had tweeted that he and Clinton “should take a drug test” before the debates because he “didn’t know what was going on” with Clinton. Calling for drug testing effectively sutures illness and criminalization.

7. Susan Sontag, Illness as Metaphor (New York: Farrar, Straus and Giroux, 1978), 3. I have written extensively about Sontag’s work on illness in my book Treatments: Language, Politics, and the Culture of Illness (Minneapolis: University of Minnesota Press, 2007). In the chapter “Politicizing Patienthood: Ideas, Experience, Affect,” I read Sontag’s Illness as Metaphor and AIDS and Its Metaphors (New York: Farrar, Straus and Giroux, 1989) along with Audre Lorde’s The Cancer Journals (San Francisco: Aunt Lute, 1980) and Eve Kosofsky Sedgwick’s essay “White Glasses,” first presented in 1991 and later published in her book Tendencies (Durham, N.C.: Duke University Press, 1993) as articulations of the politicization of patienthood. For more on the implications and impact of Sontag’s rejection of metaphor, see Ann Jurecic, Illness as Narrative (Pittsburgh: University of Pittsburgh Press, 2012).

8. Sontag, Illness as Metaphor, 3.

9. In her book Strongmen, historian Ruth Ben-Ghiat discusses the rise of authoritarian rulers in the twentieth and twenty-first centuries. She describes the performance of virility as an important tool of authoritarian rule. Ben-Ghiat looks at the explicit display of sexual virility by rulers like Benito Mussolini, Silvio Berlusconi, and Donald Trump. She notes that “virility enables corruption, projecting the idea that he is above laws that weaker individuals must follow. It also translates into state policies that target women and LGBTQ+ populations, who are as much the strongman’s enemies as prosecutors and the press,” Strongmen: Mussolini to the Present (New York: Norton, 2020), 8. I would just add that, in the practice of virility politics, we also see a targeting and pathologization of ill and disabled people.

10. Andrew Quinn, “Clinton Sustains Concussion; Benghazi Testimony Postponed,” Reuters, December 15, 2012, https://www.reuters.com/article/us-usa-clinton/clinton-sustains-concussion-benghazi-testimony-postponed-idUSBRE8BE09Q20121216.

11. “Hillary Clinton’s Head Fake,” New York Post, December 18, 2012, https://nypost.com/2012/12/18/hillary-clintons-head-fake/.

12. State Department Statement, December 31, 2012, https://2009-2017.state.gov/r/pa/prs/ps/2012/12/202419.htm.

13. Emily Smith, “Karl Rove: Hillary May Have Brain Damage,” New York Post, May 12, 2014, https://pagesix.com/2014/05/12/karl-rove-hillary-clinton-may-have-brain-damage/.

14. Jon Greenberg, “Rove: Clinton Hospital Stay and Glasses Point to Traumatic Brain Injury,” PolitiFact Truth-O-Meter, May 14, 2014, https://www.politifact.com/factchecks/2014/may/14/karl-rove/rove-clinton-hospital-stay-and-glasses-point-traum/.

15. Mary Bruce, “Hillary Clinton Took 6 Months to ‘Get Over’ Concussion,” ABC News, May 14, 2014, https://abcnews.go.com/blogs/politics/2014/05/hillary-clinton-took-6-months-to-get-over-concussion-bill-says-of-timeline.

16. Bruce.

17. Bruce.

18. For example, at the Al Smith Dinner in October 2016, Clinton said that Trump has been very concerned about her health and sent a car for her. The punchline: “It was a hearse.” See Clinton deliver this joke here: https://youtu.be/PUqOrnfpX2Q.

19. Erving Goffman, Stigma Notes on the Management of Spoiled Identity (New York: Simon and Schuster, 1963), 3.

20. Imogen Tyler, Stigma: The Machinery of Inequality (London: Zed, 2020). In her analysis, Tyler critiques Goffman for “unplug[ging] the concept of stigma from power: both the power-inflected microaggressions of the everyday social interactions that he was ostensibly interested in, and the larger structural and structuring power relations which shape the societies in which we live,” 22.

21. Tyler, 7 and 19.

22. As reported with screen grabs from The American Mirror in Dan Evon, “Photograph of Hillary Clinton Slipping on Stairs Circulated as Proof of Poor Health,” Snopes.com, August 8, 2016, https://www.snopes.com/fact-check/hillary-clinton-slipping-on-stairs/.

23. Brian Stelter, “Drudge Report Misleads Readers with Hillary Clinton Photo,” CNN, August 8, 2016, https://money.cnn.com/2016/08/08/media/drudge-report-hillary-clinton-fall/index.html. See also coverage by the BBC and Washington Post: Tim Swift, “Clinton Health Myth,” BBC News, August 19, 2016, https://www.bbc.com/news/election-us-2016-37090082, and Ariana Eunjun Cha, “Don’t Believe Everything You Read about Hillary Clinton’s Health on Google,” Washington Post, August 23, 2016, https://www.washingtonpost.com/news/to-your-health/wp/2016/08/22/dont-believe-everything-you-read-about-hillary-clintons-health-on-google/.

24. In her essay “Gaslight and the Shock Politics Two-Step,” political theorist Bonnie Honig discusses how “truth requires an infrastructure, and popular subscription to it is one of truth’s essential features,” Shell-Shocked: Feminist Criticism after Trump (New York: Fordham University Press, 2021), 24. Thus, she argues, “holding the truth now means rebutting false claims of disinformation, but such rebuttals also energize false claims, increasing the life of their news cycle, widening their impact, and contributing further to a sense of helplessness and civic exhaustion,” 25. We see this dynamic operating in relation to the illness politics used to discredit Clinton.

25. Full disclosure: I sometimes experience foot drop, because of a slipped disc in my cervical spine that protruded into and bruised my spinal cord. Surgery removed the disc and fused my cervical spine, but I still have some residual neurological symptoms, including weakness on my right side and occasional foot drop, both of which are more likely to appear if I’m tired or cold. I mention this not to diagnose Clinton as having disc issues in her cervical spine but simply to acknowledge how symptoms can be residual and intermittent and more or less apparent to others at different times.

26. WikiLeaks, September 11, 2016, 5:50 pm, http://twitter.com/wikileaks.

27. Huma Abedin email to Hillary Clinton, January 4, 2013, 5:10 pm. Copied into the text of the email is the article by Dr. Marc Siegel, “Hillary Clinton’s Blood Clot Treatment and the Need for Privacy,” Fox News, January 3, 2013, https://www.foxnews.com/health/hillary-clintons-blood-clot-treatment-and-the-need-for-privacy. Interestingly, when I searched online for this article, I discovered that the Fox News website now says this article was published on October 27, 2015.

28. Kerry Jackson, “Is Hillary Clinton’s Collapse Explained in Email from Huma Abedin?” Investor’s Business Daily, September 14, 2016, https://www.investors.com/politics/commentary/is-hillarys-collapse-explained-in-email-from-huma-abedin/.

29. Jackson.

30. Jackson.

31. Jackson.

32. Jackson.

33. Tyler, Stigma, 239.

34. WikiLeaks, September 11, 2016, 11:37 pm, http://twitter.com/wikileaks.

35. For coverage of the tweet, see Marcus Gilmer, “Wikileaks Retracts Twitter Poll Speculating about Clinton’s Health,” Mashable, September 11, 2016, https://mashable.com/article/wikileaks-hillary-clinton-health-poll.

36. Tyler, Stigma, 26.

37. Reince Priebus, September 7, 2016, 9:27pm, http://twitter.com/reince.

1. Rebecca Savransky, “Trump: My Temperament ‘Single Greatest Asset,’” The Hill, September 6, 2016, https://thehill.com/blogs/ballot-box/presidential-races/294556-trump-my-temperament-single-greatest-asset/.

2. Savransky. With Trump’s ongoing attempts to overturn the 2020 election, Clinton’s zinger is still frequently cited on social media.

3. Tyler, Stigma, 7.

4. “Donald Trump Accused of Mocking Reporter with a Disability,” ABC News, November 27, 2015, https://www.youtube.com/watch?v=hFOy8-03qdg. The ABC News clip on YouTube notes in the description that, “The Republican presidential candidate has insisted he never met the New York Times reporter, Serge F. Kovaleski.” According to Kovaleski, the two “were on a first-name basis for years.” He added, “I’ve interviewed him in his office. I’ve talked to him at press conferences. All in all, I would say around a dozen times, I’ve interacted with him as a reporter while I was at The Daily News,” Maggie Haberman, “Donald Trump Says His Mocking of New York Times Reporter Was Misread,” New York Times, November 26, 2015, https://www.nytimes.com/2015/11/27/us/politics/donald-trump-says-his-mocking-of-new-york-times-reporter-was-misread.html.

5. Serge Kovaleski and Fredrick Kunkle, “Northern New Jersey Draws Probers’ Eyes,” The Washington Post, September 18, 2001, https://www.washingtonpost.com/archive/politics/2001/09/18/northern-new-jersey-draws-probers-eyes/40f82ea4-e015-4d6e-a87e-93aa433fafdc/?itid=lk_inline_manual_39.

6. John McCormick, “Clinton Up 6 on Trump in Two-way Race in Bloomberg National Poll,” Bloomberg, August 10, 2016, https://www.bloomberg.com/news/articles/2016-08-10/bloomberg-politics-national-poll.

7. Lance Dodes and Joseph Schachter, “Mental Health Professionals Warn about Trump,” New York Times, February 13, 2017, https://www.nytimes.com/2017/02/13/opinion/mental-health-professionals-warn-about-trump.html.

8. Dodes and Schachter.

9. Allen Frances, “An Eminent Psychiatrist Demurs on Trump’s Mental State,” New York Times, February 14, 2017, https://www.nytimes.com/2017/02/14/opinion/an-eminent-psychiatrist-demurs-on-trumps-mental-state.html.

10. Frances.

11. Frances.

12. “APA Reaffirms Support for Goldwater Rule,” March 16, 2017, https://psychiatry.org/news-room/news-releases/apa-reaffirms-support-for-goldwater-rule.

13. “APA Reaffirms Support for Goldwater Rule.”

14. “APA Remains Committed to Supporting Goldwater Rule,” March 16, 2017, https://psychiatry.org/news-room/apa-blogs/apa-blog/2017/03/apa-remains-committed-to-supporting-goldwater-rule.

15. Mary L. Trump, “Psychiatrists Know What’s Wrong with My Uncle. Let Them Tell Voters,” The Washington Post, October 22, 2020, https://www.washingtonpost.com/outlook/psychiatrists-mary-trump-goldwater/2020/10/22/ebf5e2b6-13c0-11eb-ba42-ec6a580836ed_story.html.

16. Lawrence K. Altman, “The Doctor’s World; Disturbing Issue of Kennedy’s Secret Illness,” The New York Times, October 6, 1992, https://www.nytimes.com/1992/10/06/health/the-doctor-s-world-disturbing-issue-of-kennedy-s-secret-illness.html.

17. Dennis L. Breo, “JFK’s Death: The Plain Truth from the MDs Who Did the Autopsy,” JAMA: The Journal of the American Medical Association 267, no. 20 (May 27, 1992), 2794.

18. Altman, “Doctor’s World.” I am arguing that coverage of health issues has expanded even further since Altman was writing in the early 1990s, what with the rise of the cable news industry in the 1990s and social media in the 2000s. Altman’s column is an early example of a doctor commentariat, a phenomenon that also featured prominently in the 2016 election, as the example of Dr. Mehmet Oz’s “examination” of Trump’s health data. As I was writing this in 2022, Dr. Oz was the Republican candidate for the U.S. Senate in Pennsylvania. Oz engaged in his own illness politics against his opponent John Fetterman, who had a stroke in May 2022 just after he had won the Democratic party nomination. One of Oz’s senior advisors, Rachel Tripp, in a response to humorous attacks from Fetterman’s camp on a video of Oz at a grocery store expressing shock at the price of “crudités,” said, “If John Fetterman had ever eaten a vegetable in his life, then maybe he wouldn’t have had a major stroke and wouldn’t be in the position of having to lie about it constantly,” Madeline Berg, “Oz Campaign on Fetterman: If He’d ‘Eaten a Vegetable,’ He Wouldn’t Have Had a Stroke,” Business Insider, August 23, 2022, https://www.businessinsider.com/oz-on-fetterman-if-hed-eaten-vegetable-wouldnt-have-stroke-2022-8. Here illness politics stands in for a crude class politics that stigmatizes poverty. At the same time, we see the articulation of the ideological position that health is a matter of personal responsibility. This very clear example of illness politics was happening as I was finishing this book, so I was unable to showcase this story, but I do briefly return to Fetterman’s campaign and victory over Oz in chapter 4.

19. Lincoln Project, “#TrumpIsNotWell,” June 16, 2020, https://www.youtube.com/watch?v=NVy_LWM091g.

20. Paige Williams, “Inside the Lincoln Project’s War against Trump,” The New Yorker, October 5, 2020, https://www.newyorker.com/magazine/2020/10/12/inside-the-lincoln-projects-war-against-trump.

21. Williams.

22. Williams.

23. Michel Foucault, “Society Must Be Defended”: Lectures at the Collège de France, 1975–76, trans. David Macey (New York: Picador, 2003), 15.

24. Honig, Shell-Shocked, 17.

25. Michael Hardt, “War by Other Means,” Sidecar, New Left Review blog, January 21, 2021, https://newleftreview.org/sidecar/posts/war-by-other-means.

26. Williams, “Inside the Lincoln Project’s War against Trump.”

27. Williams.

28. Rebecca Cokley, “Calling Trump Unwell Doesn’t Hurt Trump. It Hurts Disabled People,” The Washington Post, June 16, 2020, https://www.washingtonpost.com/outlook/2020/06/16/mock-trump-hurts-disabled/.

29. David A. Graham, “Trump’s West Point Stumbles Aren’t the Problem,” The Atlantic, June 15, 2020, https://www.theatlantic.com/ideas/archive/2020/06/trump-ramp/613051/.

30. The Lincoln Project, June 16, 2020, https://twitter.com/ProjectLincoln/status/1273028594432958467.

31. Lisa Diedrich, “Speeding Up Slow Deaths: Medical Sovereignty circa 2005,” MediaTropes eJournal 2, no. 1 (2011): 1–22, https://mediatropes.com/index.php/Mediatropes/article/view/15744. In this earlier piece, I juxtaposed analyses of the Terri Schiavo case and Hurricane Katrina and its aftermath, both of which took place in 2005, as “mediatized medical events,” which I defined “as events in which the practices of medicine received considerable media attention at a particular historical moment; or, we might say, as events that brought a convergence between media and medical practices,” 1.

32. Jane Erikson, “Terri Schiavo Impact Continues One Year after Her Death,” Oncology Times 28, no. 5 (March 10, 2006): 6–7, https://journals.lww.com/oncology-times/fulltext/2006/03100/terri_schiavo_impact_continues_one_year_after_her.5.aspx.

33. Lisa Lerer, “No, Hillary Clinton Is Not Having a Seizure in That Video, Says AP Reporter Who Was There,” Chicago Tribune, August 13, 2016, https://www.chicagotribune.com/opinion/commentary/ct-hillary-clinton-health-20160812-story.html.

34. Drew Harwell, “Faked Pelosi Videos, Slowed to Make Her Appear Drunk, Spread across Social Media,” The Washington Post, May 24, 2019, https://www.washingtonpost.com/technology/2019/05/23/faked-pelosi-videos-slowed-make-her-appear-drunk-spread-across-social-media/.

35. Greg Sargent, “Why Fox News Thinks the ‘Cognitive Decline’ Attack on Biden Will Work,” The Washington Post, June 30, 2020, https://www.washingtonpost.com/opinions/2020/06/30/why-fox-news-thinks-cognitive-decline-attack-biden-will-work/.

36. David Choi, “In Stunning Reversal, Trump’s Personal Doctor Says Trump Dictated a Letter Declaring He Was in ‘Astonishingly Excellent’ Health during the 2016 Election,” Business Insider, May 1, 2018, https://www.businessinsider.com/trump-doctor-health-letter-who-wrote-it-2018-5.

1. Robert McRuer, “Compulsory Able-Bodiedness and Queer/Disabled Existence,” in The Disability Studies Reader, 3rd ed., ed. Lennard J. Davis, 383–92 (New York: Routledge, 2010), 383–84.

2. McRuer, 388.

3. McRuer, 388.

4. McRuer, 389. For more on McRuer’s examples of severely disabled activism, see Lorde, The Cancer Journals; Truc Nguyen, “31 Years Ago, Berkeley Disability Activists Sparked a National Movement,” KALW Public Media, TUC Radio, April 5, 2017, https://www.kalw.org/news/2017-04-05/berkeley-disability-activists-took-cues-from-the-civil-rights-era-and-sparked-a-national-movement; Oliver Sacks, Seeing Voices: A Journey into the World of the Deaf (New York: Vintage, 1989); and Douglas Crimp and Adam Rolston, AIDS Demo Graphics (Seattle: Bay Press, 1990).

5. Colleen Flanagan, June 22, 2017, 1:26 pm, http://twitter.com/ColleenFlanagan.

6. Stephanie Woodward, “I Was Pulled Out of My Wheelchair by Police. It Could Be Worse. Trumpcare Could Pass,” Vox, June 28, 2017, https://www.vox.com/first-person/2017/6/27/15876442/healthcare-medicaid-cuts-disability-protests.

7. Woodward, “I Was Pulled Out of My Wheelchair by Police.”

8. For an interesting historical analysis of the die-in as political tactic, see Daniel Ross, “The Die-In: A Short History,” Active History, June 29, 2015, https://activehistory.ca/2015/06/the-die-in/.

9. Colleen Flanagan, June 22, 2017, 1:26 pm, http://twitter.com/ColleenFlanagan.

10. Woodward, “I Was Pulled Out of My Wheelchair by Police.”

11. “Protesters Block Hallway outside McConnell’s Office,” Washington Post, June 22, 2017, https://youtu.be/rBBb997LlDU.

12. “Protesters Block Hallway outside McConnell’s Office.”

13. “Protesters Block Hallway outside McConnell’s Office.”

14. For a fascinating account of the Capitol Crawl, see Mike Erwin, “An Oral History of the Capitol Crawl,” New Mobility, July 1, 2020, https://newmobility.com/the-capitol-crawl/, which also demonstrates the multiple temporalities and spaces of activism. Bob Kafka, one of the national organizers for ADAPT who helped plan the Capitol Crawl, describes the rationale for the action this way: “The system people [disability advocacy lobbyists] were stalled. The ADA had gotten stuck in the House of Representatives, and they were not able to get it moving again. We wanted to show that ‘access is a civil right’ is more than just words, that we were willing to take action. We wanted to make sure the statement we made was symbolic and visual.” Julie Farrar, who was nineteen at the time, recalls of the action, “The feeling of camaraderie was palpable—the excitement on our march there, the staging. I don’t remember the speeches. I just remember feeling so proud in a very sacred communal way of being a part of it all.” And Anita Cameron, another longtime ADAPT activist whom I discuss further below, noted, “I felt that we were crawling our way into the history books.”

15. Erica Meltzer, “Activist Carrie Ann Lucas Told Denver Police to Google How to Use Her Wheelchair; Now She’s Charged with Interference,” Denverite, June 30, 2017, https://denverite.com/2017/06/30/refusing-tell-officers-operate-wheelchair-activist-carrie-ann-lucas-charged-interference/.

16. This is one of the key arguments of my book Indirect Action: Schizophrenia, Epilepsy, AIDS, and the Course of Health Activism (Minneapolis: University of Minnesota Press, 2016), which looks at what I call the prehistory of AIDS activism.

17. The Denver Post had a special feature on the origins of ADAPT in Denver at the time of the protests against repeal of the ACA in summer 2017: Danika Worthington, “Meet the Disabled Activists from Denver Who Changed a Nation,” Denver Post, July 5, 2017, https://www.denverpost.com/2017/07/05/adapt-disabled-activists-denver/.

18. Worthington.

19. Worthington.

20. John Zangas, “‘Stop the Shock’: FDA Director’s Home Beseiged [sic] by Disability Rights Activists,” adapt.org, March 22, 2018, https://adapt.org/stop-the-shock-fda-directors-home-beseiged-by-disability-rights-activists/.

21. For an analysis of the multiple sites and practices of confinement, and the importance of disability critique in relation to carceral studies and prison activism, see Liat Ben-Moshe, Chris Chapman, and Allison C. Carey, eds. Disability Incarcerated: Imprisonment and Disability in the United States and Canada (New York: Palgrave Macmillan, 2014).

22. See, for example, Erving Goffman, The Presentation of Self in Everyday Life (New York: Anchor, 1959), and Stigma.

23. I am referring to the work first articulated by J. L. Austin in How to Do Things with Words (Cambridge, Mass.: Harvard University Press, 1961), and later expanded by Jacques Derrida, Margins of Philosophy, trans. Alan Bass (Chicago: University of Chicago Press, 1982); Judith Butler, Excitable Speech: A Politics of the Performative (New York: Routledge, 1997); and Eve Kosofsky Sedgwick, Touching Feeling: Affect, Pedagogy, Performativity (Durham, N.C.: Duke University Press, 2003); among others.

24. Quoted in Sarah Kim, “Carrie Ann Lucas Dies at Age 47. You Probably Haven’t Heard of Her and That’s a Problem,” Forbes, February 25, 2019, https://www.forbes.com/sites/sarahkim/2019/02/25/carrie-ann-lucas-dies/?sh=5323e6eb119e.

25. Kim.

26. Kim.

27. Kim, emphasis in original.

28. Katharine Q. Seelye, “Carrie Ann Lucas, Champion for Disabled Parents, Dies at 47,” The New York Times, February 27, 2019, https://www.nytimes.com/2019/02/27/obituaries/carrie-ann-lucas-dead.html.

29. Seelye.

30. Seelye.

31. Cal Montgomery, July 16, 2019, 2:44 pm, https://twitter.com/Cal__Montgomery/.

32. Cal Montgomery, July 16, 2019, 2:44 pm, https://twitter.com/Cal__Montgomery/.

33. Cal Montgomery, July 16, 2019, 2:44 pm, https://twitter.com/Cal__Montgomery/.

34. Alice Wong, “Racism, immigration, and the disability community: A snapshot,” wakelet, @AliceWong9697, https://wakelet.com/wake/e7d48cb7-7ea8-42a4-8bb7-078cb796ebc7.

35. Bruce Darling, July 17, 2019, 12:31 am, https://twitter.com/ADAPTerBruce/.

36. “Statement from NCIL’s Board of Directors,” The Advocacy Monitor: Independent Living News & Policy from the National Council on Independent Living, July 17, 2019, https://advocacymonitor.com/statement-from-ncils-board-of-directors/.

37. “Statement from NCIL’s Board of Directors.”

38. “ADAPT’s Statement of REAL Values and Commitment,” adapt.org, no date, https://adapt.org/adapts-statement-of-real-values-and-commitment/.

39. “ADAPT’s Statement of REAL Values and Commitment.”

40. “National ADAPT Statement Disavowing Bruce Darling,” February 17, 2020, https://nationaladapt.org/national-adapt-statement-disavowing-bruce-darling/.

1. “About #CripTheVote,” Disability Visibility Project blog, November 10, 2016. https://disabilityvisibilityproject.com/2016/11/10/1110-post-election-cripthevote-chat-whatsnext/.

2. In showcasing #CripTheVote in this chapter, I will also frequently draw on Alice Wong’s linked but also separate work as creator of the Disability Visibility website and podcast. Wong’s website has been used to promote and archive #CripTheVote Twitter chats and other activities. Wong and others use the hashtag #DisabilityVisibility and, along with her personal Twitter account (@SFdirewolf), Wong also tweets as @DisVisibility, an account for “creating, amplifying & sharing disability media and culture,” as the bio for the account notes.

3. The podcast and transcript are available on the Disability Visibility website: Alice Wong with Gregg Beratan and Andrew Pulrang, “Activism and Disability Community,” Disability Visibility Podcast, Episode 1, September 13, 2017, https://disabilityvisibilityproject.com/2017/09/13/disability-visibility-podcast-ep-1-activism-and-the-disability-community/. Wong continued hosting the Disability Visibility podcast until April 2021, ending with podcast #100. This conversation, as well as another conversation between the three founders of #CripTheVote, are also included together in a condensed and edited form in Wong’s memoir Year of the Tiger: An Activist’s Life (New York: Vintage, 2022), 73. Some citations will be from the condensed interview in Year of the Tiger and some from the longer version on the podcast.

4. Wong, Year of the Tiger, 74.

5. Wong, 75.

6. Wong with Beratan and Pulrang, “Activism and Disability Community.”

7. Wong with Beratan and Pulrang.

8. Wong with Beratan and Pulrang.

9. Puar, The Right to Maim, xix. Puar mentions disability scholars Nirmala Erevelles’s Disability and Difference in Global Contexts: Enabling a Transformative Body Politic (New York: Palgrave Macmillan, 2011) and Christopher M. Bell’s edited volume Blackness and Disability: Critical Examinations and Cultural Interventions (East Lansing: Michigan State University Press, 2011) as having “insistently pointed out the need in disability studies for intersectional analysis,” xix.

10. Puar, The Right to Maim, xix.

11. In the first survey, 508 people responded and the top three disability policy priorities were: health care, civil rights/discrimination, and accessibility. The top three disability policy ideas were: hire and appoint more disabled people to government and policymaking positions, pass the Disability Integration Act to promote independent living instead of nursing homes, and require disability awareness training for law enforcement. In 2018, #CripTheVote conducted its second disability issues survey. They received 589 responses and the top three disability policy priorities were the same as in 2016. The top three disability policy ideas changed from 2016 with “Defend Social Security and Medicaid/Medicare against political attacks” increasing almost 20 percentage points, followed by hire and appoint more disabled people to government and policymaking positions and require disability awareness training for law enforcement. Results of the survey can be found here: http://cripthevote.blogspot.com/p/2016-survey.html.

12. Carrie Ann Lucas, October 12, 2017, 8:39pm, https://twitter.com/DisabilityCubed/status/918622296721408000.

13. Kafai, Crip Kinship, 118.

14. Kafai, 118.

15. Heather Walker, “#CripTheVote: How Disabled Activists Used Twitter for Political Engagement during the 2016 Presidential Election,” Participation: Journal of Audience and Reception Studies 17, no. 1 (May 2020): 150.

16. Walker, 166.

17. Walker, 162.

18. Gregg Beratan, Andrew Pulrang, and Alice Wong, “Looking Ahead: The Future of #CripTheVote,” Disability Visibility blog, November 17, 2016, https://disabilityvisibilityproject.com/2016/11/17/looking-ahead-the-future-of-cripthevote/.

19. Beratan, Pulrang, and Wong, “Looking Ahead.”

20. Saidiya Hartman, Wayward Lives, Beautiful Experiments: Intimate Histories of Riotous Black Girls, Troublesome Women, and Queer Radicals (New York: Norton, 2019), xv.

21. Hartman, 61.

22. Hartman, 348.

23. Gregg Beratan, Andrew Pulrang, and Alice Wong, “2017: Year in Review,” #CripTheVote blog, December 31, 2017, http://cripthevote.blogspot.com/2017/.

24. As Wong (@SFdirewolf) noted in response to a reply to a tweet from her announcing #CripTheVote’s “first ever candidate chat,” this was not the first presidential candidate to have a forum with a disabled audience. As Wong explained, “@JulianCastro held a Twitter town hall with @IntersectedCrip [Sandy Ho, founder and coorganizer of the Disability and Intersectionality Summit] recently” and she linked to a wakelet from that event. Alice Wong, January 5, 2020, 9:00 pm, https://twitter.com/SFdirewolf/status/1214003738714619904.

25. Alice Wong, January 7, 2020, 1:30 pm, https://twitter.com/DisVisibility/status/1214615182363840512. Senator Warren’s plan, “Protecting the Rights and Equality of People with Disabilities,” is still available on her website: https://elizabethwarren.com/plans/disability-rights-and-equality/.

26. “Protecting the Rights and Equality of People with Disabilities.” Hyperlinks take readers to news articles about each of the protests mentioned in this opening paragraph.

27. “Protecting the Rights and Equality of People with Disabilities.”

28. “Protecting the Rights and Equality of People with Disabilities.”

29. “Protecting the Rights and Equality of People with Disabilities.”

30. Elizabeth Warren, January 7, 2020, 1:27 pm, https://twitter.com/ewarren/status/1214614548830965760.

31. Lisa Diedrich, January 7, 2020, 1:31 pm, https://twitter.com/lldiedrich/status/1214615563189866498.

32. Zack Budryk, “Warren Holds Twitter Town Hall with Disabled Activists,” The Hill, January 7, 2020, https://thehill.com/homenews/campaign/477221-warren-participates-in-twitter-town-hall-with-disabled-activists/.

33. Budryk.

34. As happens relatively frequently during #CripTheVote chats, especially ones that trend as the chat with Senator Warren did, some Twitter users think the “crip” in #CripTheVote refers to the street gang in Los Angeles and express surprise in discovering this other use in the hashtag. There have also been some concerns about the use of “crip” because of its history as a derogatory term for disabled people. In a post on the #CripTheVote website, Andrew Pulrang offers some “Notes on ‘Crip’” to explain the reasons the co-partners opted to use “crip” in the hashtag. He begins by noting that “Selective use of ‘crip’ or ‘crippled’ by people with disabilities is a conscious act of empowerment through ‘reclaiming’ a former slur as a badge of pride.” He also argues the term can be “used ironically, to convey a bit of edginess, humor, and confidence, from a community that people tend to assume will be sad, bitter, and boring,” Pulrang, “#CripTheVote: Notes On ‘Crip,’” Disability Thinking blog, March 29, 2016, https://disabilitythinking.com/disabilitythinking/2016/3/28/cripthevote-notes-on-crip.

35. Along with the chat in May 2020, #CripTheVote has also held Twitter chats on “Coronavirus and the 2020 Elections” on September 27, 2020, and on “Pandemic Policy” on January 16, 2022.

36. Alice Wong, May 15, 2020, 2 p.m., https://mobile.twitter.com/DisVisibility/status/1261355670168907776.

37. “May 17, 2020 #CripTheVote Twitter Chat: Coronavirus and Health Disparities,” May 11, 2020. http://cripthevote.blogspot.com/2020/05/may-17-2020-cripthevote-twitter-chat.html.

38. “May 17, 2020 #CripTheVote Twitter Chat: Coronavirus and Health Disparities.” Emphasis in original.

39. Andrew Pulrang, May 17, 2020, 7:03 p.m., @AndrewPulrang.

40. Dustin Gibson, May 17, 2020, 7:10 p.m., @notthreefifths.

41. In Crip Kinship, Kafai interviews community organizer and culture worker Lilac Vylette Maldonado, who identifies as “a sick, disabled, neurodivergent, two-spirit Chicanx femme,” about “finding crip kinship online.” Maldonado beautifully describes the potentiality of such a space: “Over the frayed threads of the web, a framework for survival has been lovingly yet imperfectly created by those of us who are brave enough to imagine a kinder, better, freer world than the one we inherited. This is the framework of our kinship, it is our breadcrumb trail to liberation,” 119. Hashtags like #CripTheVote also function as a breadcrumb trail to liberation.

42. Gerard K. Cohen, November 4, 2022, 1:30 p.m., @geraldkcohen.

43. Gerard K. Cohen, November 4, 2022, 1:30 p.m., @geraldkcohen.

44. Mia Sato, “Twitter’s Latest Feature Is a Tool to Make Your Feed More Accessible,” The Verge, September 19, 2022, https://www.theverge.com/2022/9/19/23357145/twitters-alt-text-reminders-expansion-image-descriptions-accessibility.

45. https://www.micahbazant.com/about.

46. Micah Bazant, October 23, 2020, micahbazant, https://www.instagram.com/p/CGsxqPbgpmx/. The phrase “access is love” refers to the hashtag #AccessIsLove created by Wong and Mia Mingus.

1. Jennifer Brea, dir., Unrest. August 24, 2017. Video; 98 mins. Shella Films and Little by Little Films. https://vimeo.com/ondemand/unrest.

2. Butler, Notes Toward a Performative Theory of Assembly, 78.

3. Butler, 78.

4. Butler, 69.

5. Merriam-Webster online dictionary, https://www.merriam-webster.com/medical/somatoform%20disorder.

6. See, for example, my piece “Illness as Assemblage: The Case of Hystero-epilepsy,” Body & Society 21, no. 3 (September 2015): 66–90.

7. In her lecture on “Gender Politics and the Right to Appear” in Notes Toward a Performative Theory of Assembly, Butler explores a question she is often asked about the links between her analysis of the performativity of gender with her later analysis of precarity. She reckons “it is possible to see how precarity has always been in this picture, since gender performativity was a theory and practice, one might say, that opposed the unlivable conditions in which gender and sexual minorities live (and sometimes also those gender majorities who ‘passed’ as normative at very high psychic and somatic costs),” 33.

8. Sara Ahmed’s concept of the nonperformative is useful here. Ahmed discusses this in the context of institutional diversity “commitments” that don’t change the institution in any meaningful way, On Being Included: Racism and Diversity in Institutional Life (Durham, N.C.: Duke University Press, 2012). I would argue that diagnostic nonperformatives work to contain illnesses of unknown etiologies so that they are not a problem for medicine and its cognitive and social authority.

9. Ed Yong, “COVID-19 Can Last for Several Months,” The Atlantic, June 4, 2020, https://www.theatlantic.com/health/archive/2020/06/covid-19-coronavirus-longterm-symptoms-months/612679/.

10. Jennifer Brea, “Director’s Statement,” https://static1.squarespace.com/static/597750f4d2b857b95a7e537e/t/59c2b618e3df28b1658595b8/1505932827580/UNREST_Press_Kit_August.pdf.

11. Susan Wendell, The Rejected Body: Feminist Philosophical Reflections on Disability (New York: Routledge, 1996), 119.

12. Wendell, 2.

13. Wendell, 2.

14. Wendell, 3.

15. Wendell, 135.

16. “Protest at the White House to Tell President Biden ‘Pandemic Is NOT Over,” September 19, 2022, https://www.meaction.net/2022/09/19/protest-at-white-house-to-tell-president-biden-pandemic-is-not-over/.

17. Butler, Notes Toward a Performative Theory of Assembly, 96.

18. Butler, 86.

19. “Protest at the White House to Tell President Biden ‘Pandemic Is NOT Over.’”

20. “Protest at the White House to Tell President Biden ‘Pandemic Is NOT Over.’”

21. Zeynep Tufekci, “Protesters So Ill, They Couldn’t Get Arrested,” New York Times, October 29, 2022, A-22, https://www.nytimes.com/2022/10/27/opinion/me-cfs-long-covid.html.

22. Tufekci, A-22.

23. Tufekci, A-22.

24. Tufekci, A-22.

25. Tufekci, A-22.

26. Tufekci, A-22.

27. Butler, Notes Toward a Performative Theory of Assembly, 125.

28. Butler, 140.

1. Felicity Callard and Elisa Perego, “How and Why Patients Made Long Covid,” Social Science and Medicine 268 (2021), https://doi.org/10.1016/j.socscimed.2020.113426.

2. Yong, “COVID-19 Can Last for Several Months.”

3. Yong, n.p.

4. In an opinion piece for The BMJ published on October 1, 2020, Felicity Callard, Elisa Perego, and four others, offer five reasons for “Why We Need to Keep Using the Patient Made Term ‘Long Covid’” (blogs.bmj.com, October 1, 2020, https://blogs.bmj.com/bmj/2020/10/01/why-we-need-to-keep-using-the-patient-made-term-long-covid/). In point number 1, they note that “Long Covid acknowledges that the cause and disease course are as yet unknown.” For them, the strength of the term “is in its non-specificity.”

5. Lindsey Sitz, “Why This Black Woman with ‘Long Covid’ Feels the Medical Community Has Failed Her,” The Washington Post, February 2, 2021, https://www.washingtonpost.com/video/topics/coronavirus/why-this-black-woman-with-long-covid-feels-the-medical-community-has-failed-her/2021/02/02/68ce212c-f1ba-4983-8d07-d2fd5e8e4429_video.html.

6. Callard and Perego, “How and Why Patients Made Long Covid,” 1.

7. Callard and Perego, 1.

8. Callard and Perego, 2.

9. Felicity Callard, “Very, Very Mild: Covid-19 Symptoms and Illness Classification,” Somatosphere, May 8, 2020, http://somatosphere.net/2020/mild-covid.html/.

10. Felicity Callard, May 9, 2020, 6:37 a.m., @felicitycallard.

11. Callard and Perego, “How and Why Patients Made Long Covid,” 3. Callard and Perego cite Lorraine Daston, Biographies of Scientific Objects (Chicago: University of Chicago Press, 2000).

12. Callard and Perego, “How and Why Patients Made Long Covid,” 3.

13. A recent study by the CDC that looked at “death certificate literal text to identify and quantify COVID-19 deaths with post-acute sequelae of COVID-19 (PASC), or long COVID, in the National Vital Statistics System (NVSS)” attempted to account for the multiplicity of terms used to describe the phenomenon long Covid. The study searched for the following terms on death certificates: chronic Covid, long Covid, long haul Covid, long hauler Covid, post-acute sequelae of Covid-19, post- acute sequelae SARS-CoV-2 infection, PASC, post Covid, and post Covid syndrome. Farida B. Ahmad et al., “Identification of Deaths with Post-acute Sequelae of COVID-19 from Death Certificate Literal Text: United States, January 1, 2020–June 30, 2022,” NVSS Vital Statistics Rapid Release, Report No. 25, December 2022, https://www.cdc.gov/nchs/data/vsrr/vsrr025.pdf.

14. Callard and Perego, “How and Why Patients Made Long Covid,” 4.

15. Yong, “COVID-19 Can Last for Several Months.”

16. Yong.

17. Yong. In my book Treatments, I conclude by discussing how pain and suffering create a différend for medicine: that is, following Lyotard’s use of the term, an incommensurability between the doctor and patient in the doctor–patient relationship, 149. I argue that despite, or indeed because of, this incommensurability, an ethical imperative—what I called an “ethics of failure”—can be the beginning of searching for new forms of engagement, both aesthetic and political, 150.

18. “Cynthia Adinig Gives Testimony on the Coronavirus Crisis,” August 2, 2022, https://www.youtube.com/watch?v=cn6y15ZjyLo&t=2s.

19. Sitz, “Why This Black Woman with ‘Long Covid’ Feels the Medical Community Has Failed Her.”

20. For more on the apology as speech act, see Sara Ahmed, The Cultural Politics of Emotion (New York: Routledge, 2004).