We're Not Broken
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prompting the hashtag #AccessToJoe on Twitter: Sara Luterman, “Biden’s Disability Policy Plan Is Surprisingly Good,” Nation, June 1, 2020, https://www.thenation.com/article/politics/biden-disability-policy-plan/.
finally released a disability policy platform: Joe Biden, “The Biden Plan for Full Participation and Equality for People with Disabilities,” June 2020, https://joebiden.com/disabilities/#.
everybody has some form of disability: Luterman, “Biden’s Disability Policy Plan Is Surprisingly Good.”
died at a higher rate: Joseph Shapiro, “COVID-19 Infections and Deaths Are Higher Among Those with Intellectual Disabilities,” NPR, June 9, 2020, https://www.npr.org/2020/06/09/872401607/covid-19-infections-and-deaths-are-higher-among-those-with-intellectual-disabili.
“I didn’t want to claim that title”: Molly Doris-Pierce, interview with the author, 2020.
“Nothing about us without us”: Ayanna Pressley, reporting by the author, 2020.
the slogan of the self-advocacy movement for disability rights: Charlton, Nothing About Us Without Us.
Lara Lea Trump did highlight that under his administration: Lara Trump, “Lara Trump Speaks on Behalf of the Trump Campaign during AAPD REV UP 2020 Summit,” YouTube, June 23, 2020, https://www.youtube.com/watch?v=tQJ9NKrIhLI.
the first Democratic presidential candidate: Sarah Kim, “President Hopeful Kamala Harris First 2020 Candidate to Announce Exclusive Plan for People with Disabilities,” Forbes, August 30, 2019, https://www.forbes.com/sites/sarahkim/2019/08/30/kamala-harris-disability-plan/#7c8674561234.
“Institutions for Mental Disease Exclusion”: “Kamala Harris Unveils New Mental Health Care Plan,” Democracy in Action, November 25, 2019, https://www.democracyinaction.us/2020/harris/harrispolicy112519mentalhealth.html.
The IMD exclusion prevents Medicaid: Alison Mitchell, “Medicaid’s Institutions for Mental Disease (IMD) Exclusion,” Congressional Research Service, https://fas.org/sgp/crs/misc/IF10222.pdf.
repealing the exclusion: Sara Luterman, “How Kamala Harris’s Mental Health Plan Could Hurt the Most Vulnerable,” Vox.com, November 27, 2019, https://www.vox.com/first-person/2019/11/27/20985430/kamala-harris-mental-health-plan.
planning on reworking her mental-health plan: Reporting by the author, 2020.
“similar to the drive to view autism”: John Hendrickson, “What Joe Biden Can’t Bring Himself to Say,” Atlantic, January/February 2020, https://www.theatlantic.com/magazine/archive/2020/01/joe-biden-stutter-profile/602401/.
pin that supports the Autism Alliance in Michigan: Tim Alberta, Twitter, December 20, 2019, https://twitter.com/TimAlberta/status/1208118246584541184.
Abby Abrams at TIME: Abby Abrams, “Voter Turnout Surged Among People With Disabilities Last Year. Activists Want to Make Sure That Continues in 2020,” Time, July 10, 2019, https://time.com/5622652/disability-voter-turnout-2020/.
Maggie Astor: Maggie Astor, “Elizabeth Warren Opens a New Front in Disability Policy,” New York Times, January 10, 2020, https://www.nytimes.com/2020/01/10/us/politics/elizabeth-warren-disability-plan.html.
a disabled father: David M. Perry, “My Coronavirus Prep Includes Protecting My Disabled Child,” Washington Post, March 4, 2020, https://www.washingtonpost.com/outlook/2020/03/04/coronavirus-prep-disabled-children/.
when I saw a tweet from right-wing provocateur Ryan Saavedra: Ryan Saavedra, Twitter, September, 6, 2019, https://twitter.com/RealSaavedra/status/1170082834377105410.
“I hope @KamalaHarris enjoys losing the disability vote”: Julia Bascom, Twitter, September, 7, 2019, https://twitter.com/JustStimming/status/1170392597178789889.
he would be up to handling this story correctly: Zack Budryk, “Harris Apologizes and Says She Didn’t Hear Questioner Call Trump Policies ‘Mentally Retarded,’” Hill, September 7, 2019, https://thehill.com/homenews/campaign/460385-harris-says-she-didnt-hear-questioner-call-trump-policies-mentally-retarded.
quote autistic self-advocates like Ari Ne’eman: Sheri Fink, “U.S. Civil Rights Office Rejects Rationing Medical Care Based on Disability, Age,” New York Times, March 28, 2020, https://www.nytimes.com/2020/03/28/us/coronavirus-disabilities-rationing-ventilators-triage.html.
cover parents like Shannon Des Roches Rosa: Rose Eveleth, “Beyond the Smiley-Face Pain Scale,” Atlantic, January, 7, 2015, https://www.theatlantic.com/health/archive/2015/01/beyond-the-smiley-face-pain-scale/384049/.
ban on recognizing same-sex marriages: Eyder Peralta, “Court Overturns DOMA, Sidesteps Broad Gay Marriage Ruling,” June 26, 2013, https://www.npr.org/sections/thetwo-way/2013/06/26/195857796/supreme-court-strikes-down-defense-of-marriage-act.
“It’s extraordinary to me that today”: Roberta Kaplan, interview with the author, 2020.
“So, I was diagnosed at twelve”: Ari Ne’eman, interview with the author, 2019.
“What I ask for the Negro is not benevolence”; Frederick Douglass, “What the Black Man Wants,” 1865, http://utc.iath.virginia.edu/africam/afspfdat.html.
Epilogue
Mel Baggs died: Harrison Smith, “Mel Baggs, Influential Blogger on Disability and Autism, Dies at 39,” Washington Post, April 29, 2020, https://www.washingtonpost.com/local/obituaries/mel-baggs-influential-blogger-on-disability-and-autism-dies-at-39/2020/04/29/bbb0fdd2-8a24-11ea-ac8a-fe9b8088e101_story.html.
“I find it very interesting that”: Mel Baggs, “In My Language,” YouTube, January 14, 2007, https://www.youtube.com/watch?v=JnylM1hI2jc.
finally landed a job after years of searching: Andrew Savicki, correspondence with the author, 2020.
“There are people being tortured”: Mel Baggs, “In My Language.”
Index
A | B | C | D | E | F | G | H | I | J | K | L | M | N | O | P | Q | R | S | T | U | V | W | X | Y | Z
A
ABA. See applied behavioral analysis (ABA)
Abbott, Greg, 68–69
Abrams, Abby, 207–8
academia. See education
accommodations/education
asking for, 33, 34, 35–37, 41
changes in, 37–38
college/community college, xiv, xix, xx, 6–7, 30, 31, 33, 34, 35–37, 38, 39–41, 42
distrust and, 34
faculty importance, 39–40
high school/elementary school, 34
inspirational vs. successful, 40–41
See also Marshall University, West Virginia
accommodations/work, xix–xx, 74, 75, 81–82
AC/DC, 8
Acosta, Alex, 69
ADA Generation, xvi
adjustment disorder, 179
Aerosmith, 9
Affordable Care Act, 203
Alberta, Tim, 207
Albright, Amanda, 45, 46
All the Weight of Our Dreams (Brown, Onaiwu, Ashkenazy), 200
American Civil Liberties Union (ACLU), 100
American Prospect, 58
American Psychiatric Association, 5
See also Diagnostic and Statistical Manual of Mental Disorders
Americans with Disabilities Act (1990)
ADA Generation and, xvi, 72–73
Amendments Act (2008) and autism, 5
effects, 5, 6–7, 93–94
Harkin and, 17
Angres, Ronald, 85
applied behavioral analysis (ABA)
controversy over, 116, 117–18
description, 116, 117
health insurance and, 116, 117
punitive components, 117
Apprentice, The, 23
Archives of Sexual Behavior, 167
“Aria,” 37–38
ASAN. See Autistic Self Advocacy Network (ASAN)
Ashkenazy, E., 200
Asperger, Hans
autism spectrum and, 4, 158
Nazi child euthanasia program and, 4
“Asperger’s syndrome,” xvii, 4–5, 6, 135, 136, 178, 186
Aspies for Freedom, 21
assimilation, 183–84
Association f
or People Supporting Employment First (APSE), 70
Astor, Maggie, 207–8
Atlantic, 13, 207
Atypical (Netflix series), 136, 143, 144
Atypical Student Society, George Washington University, 176
Aurora, Colorado movie theater shootings, xiii
Autism (2017 studies), 159, 180–81
Autism Advantage, 54
Autism Advocate, 115
Autism Alliance, Michigan, 207
Autism and Development Disabilities Monitoring Network, 177
Autism Asperger Spectrum Coalition for Employment and Networking Development (AASCEND), 141–42
autism/autistic people
children vs. adults, xiv–xv
community importance, 119
condition as disability vs. embracing neurodiversity and, 118–19
diagnosing adults, 53–54
estimates on numbers, xv
estimates on numbers of adults, 127
executive functioning and, 27, 31, 41–42, 43, 44, 90, 91, 93, 107, 178
fear-and-pity/fund-raiser, 13
history/definitions, xvii, 3–5
identity and, xv–xvi, xviii, 35, 119–20
infantilization of, 143–45, 151–52
media/coverage shift, 201
mistakes and, 107–8
as not single-issue people, 2–3
parents killing children and, 14–16
positive examples and, 211–12, 213
progress/optimism for future, 201, 203, 207, 211, 212, 213–14, 215–16
public identity and, xviii
reporters/stories and, 207–10
speech/language and, 3, 4–5
state legislator examples, 2
surge in diagnoses/surge reasons, 5, 9, 112, 114, 199
trivializing the condition, 119
See also specific components; specific individuals
Autism Campus Inclusion Leadership Academy, 22
Autism CARES (Collaboration, Accountability, Research, Education, and Support) Act, 22
See also Combating Autism Act
Autism in Love (documentary), 145–46
Autism Network International
growth, 21–22
Sinclair and, 19–20, 21
Autism Research, 147
Autism Research Institute, 114
Autism Research Review International, 87
Autism Science Foundation, 18, 102
Autism Society of America, 12, 30, 87, 145
Autism Society San Francisco Bay Area, 100
Autism Speaks
autistic board members, 24
autistic shooter myth and, xiii
“cure” and, 10, 23–24, 102, 114
description, 21–22
removal of “cure” language, 24–25
Robison and, 24
Sesame Street/autistic character, 171
vaccine myth and, 18
Wright, Bob, 10, 18, 23, 114
Wright, Suzanne, 10, 18, 24, 114
autism spectrum disorders (ASD)
Diagnostic and Statistical Manual of Mental Disorders, xvii, 5, 6, 200
DSM and, xvii, 5, 6, 200
surge in diagnoses/surge reasons, 5, 9, 112, 114, 199
“autistic disorder,” 4
Autistic Hoya blog, 39
Autistic Self Advocacy Network (ASAN)
Autism Campus Inclusion Leadership Academy, 22
Loop (film) and, 170
Ne’eman and, 12–13, 21, 203–4
Pittsburgh Center for Autistic Advocacy and, 26–27
politics and, 203, 204
progress, 202
Sesame Street/autistic character, 171
STEM fields and, 63–64
autistic shooter myth, xiii–xiv
Autistic Women and Nonbinary Network, 169, 182
Autreat, 20, 199–200
Autsit, 142
Autspace, 66, 167, 195
Aut-tastic (podcast), 134
B
Bagatell, Nancy, 119
Baggs, Mel
death, 217
video/In My Language, 26, 217–18, 219
Bailin, Aiyana, 112
Bandy, Madison, 172
Barnett, Claire
background/Garcia and, 50–51
Frist Center and, 51
Baron-Cohen, Simon, 158–59
Bascom, Julia
ASAN, 64, 83, 108, 148, 202–3, 209
on autism support, 89
background, 89
Biden/Harris and, 204, 208
Callahan and, 83–84, 90, 91, 107, 108
description/functioning labels and, 83, 84, 89–90, 108
executive-functioning tasks, 80
housing for autistic people and, 99, 102
LGBTQ and, 148
meltdown, 109
shared living, 91–92
on supported decision-making, 105
support/needs, 89–90, 108, 109–10
United Nations speech, 109
work/autistic people, 64–65, 69, 71, 83
See also Callahan, Colton
behavioral science and occupational therapy department, University of North Carolina, 119
Bellevue College
fees and, 44
Neurodiversity Navigators program/philosophy, 43–44
Bell, Peter, xiii
Benham, Jessica
autism advocacy, 26–27, 215
autism/Spectrum Generation, 1, 27–28
election, 28
state legislature campaign, 1, 2–3, 27–28
Stonewall Democrats/LGBTQ people and, 1, 2, 10, 28, 148
Bettelheim, Bruno
abuse/“treatments” by, 84–85, 114
institutions and, 114
Orthogenic School, Chicago, 11
studies/smearing parents, xi, 11
theories, xi, 11, 84–85, 114, 177
views falling out of fashion, 11
Biden, Joe
disability plan/outreach, 204, 205
Garcia and, 75
Garcia’s “stepfather” and, 7
presidential campaign, 205, 206
stutter, 204, 207
Big Bang Theory, The (television show), 170
Bittersweet Farms, 98
“Black Lives Matter,” 175, 187–88
Black Sabbath, 8
Blake, Jacob, 187
bleach drinking, 14, 116
Bleuler, Eugen, 3
Booker, Cory
autism and, 113, 203
background/description, 112–13
Boston magazine, 15, 16
Brandeis University, 39
British Common Law, 104
Brown, Lydia X. Z.
autism advocacy, 25, 39, 200
background, 25, 39
Brown, Michael, 175
Brown, Sarah, 47
Budryk, Zack, 208–9
Burton, Dan
Foster conspiracy theory, 16–17
Wakefield/vaccines myth and, 16–17
Bush, George H. W., 5
Bush, George W., 10, 20, 55, 58, 69, 106
Bustle, 152
Bustos, Cheri, ix, x
Buttigieg, Pete, 203
C
Cain, Briscoe, 2
California Polytechnic University, 31
Callahan, Colton
Bascom and, 83–84, 90, 91, 107, 108
shared living, 91–92
See also Bascom, Julia
Cammie, 51, 52
Camouflage (novel), 159
camouflaging. See masking
“Carolina in My Mind,” 52
Carson, Ben, xii
Castile, Philando, 175
Castro, Julián, 203, 205, 206
Caudel, Dave
background, 48–49
Stassun and, 49
work helping autistic people, 49–50
CBS This Morning, 14
Centers for Disease Control and Prevention (CDC), xv, 127, 158, 161, 177, 178
Centers for Medicare and Medicaid Services, 98, 100, 101
Chaffey Community College, 32, 33–34, 35
Chait, Jonathan, 58
chelation therapy, 13, 115
“childhood disintegrative disorder,” 5
Child Study Center, New York University ads/criticism, 13, 21
Christensen, Julie, 69–70, 72–73
“chronic undifferentiated schizophrenia,” 84
Ciampi, Marcelle
disclosure/work, 61
inclusion/work, 76, 77
Claremont McKenna College, 11
Clef Hangers, UNC, 52
climate change, 172
Clinton, Hillary, 54, 202
CNN, xii, 26, 149, 150
Cohen, Michael, 198
Cohn, Jonathan, 58
Cokley, Rebecca, xvi, 204–5
Combating Autism Act, 10, 20, 22
See also Autism CARES (Collaboration, Accountability, Research, Education, and Support) Act