We mourn the passing of Alice Wong
"She has joined the ancestors, but her light will continue to illuminate disability spaces and beyond."
Alice Wong, a lodestar in the disability community whose brilliant, uncompromising rays illuminated minds around the world, passed away on November 14 at a San Francisco hospital. At her passing, her friend Sandy Ho posted the following note, in keeping with Alice’s wishes, on Alice’s Facebook page:
Hi everyone, it looks like I ran out of time. I have so many dreams that I wanted to fulfill and plans to create new stories for you. There are a few in progress that might come to fruition in a few years if things work out. I did not ever imagine I would live to this age and end up a writer, editor, activist, and more. As a kid riddled with insecurity and internalized ableism, I could not see a path forward. It was thanks to friendships and some great teachers who believed in me that I was able to fight my way out of miserable situations into a place where I finally felt comfortable in my skin. We need more stories about us and our culture. You all, we all, deserve the everything and more in such a hostile, ableist environment. Our wisdom is incisive and unflinching. I'm honored to be your ancestor and believe disabled oracles like us will light the way to the future. Don't let the bastards grind you down. I love you all.
Multiple obituaries have been published, including in The Sick Times, San Francisco Chronicle, Washington Post, and New York Times, among others. Multitudes continue to gather and share on social media to mourn the loss and celebrate the monumental life and beautiful, fierce soul of this titan of disability activism. She has joined the ancestors, but her light will continue to illuminate disability spaces and beyond.
News you can use
- Should Hitler’s DNA have been studied? Not for this. A genetic analysis has shown that the Nazi leader bore some genetic variants that are associated statistically with various conditions, including autism, ADHD, bipolar disorder, and schizophrenia. We all carry some genetic variants that have been linked in large population studies with various traits and conditions that we don’t actually have. I have variants associated with being a morning person, having light-colored hair, and sunburning easily, none of which apply to me. At any rate, it was a poor decision to publicize these associations. Doing so can only add stigma to people who actually have these conditions, given that this man, who was never diagnosed with any of of them, was one of the most horrific monsters in human history. The findings contribute exactly nothing to science or our understanding of why he did what he did. Maybe if they’d looked at associations with a predisposition to being a vile hatemongering polemicist with a serious anger management problem and a magnetism for gullible bigots, that might actually have been useful.
- Medical associations are stepping once more into the breach thanks to our AWOL national public health enterprise: This time, it’s the American Academy of Pediatrics feeling compelled to issue a statement that leucovorin, lately flogged by the current administration and RFK the Lesser as a “treatment” for autism, should not be used in autistic children. Perhaps someday, we will once again have people running our federal public health enterprise who understand the value of evidence and expertise. A girl can dream.
- Speaking of which: Surprising no one who follows evidence, a recent review has found no clear link between acetaminophen use in pregnancy and having an autistic child. Yes, we are sick of all of this, too.
- In further news of “another thing claimed to be associated with being autistic that is not associated with being autistic,” we have the microbiome. A new critical analysis of published studies shows that the bundle of publications claiming a link are “beset by conceptual and methodological flaws and limitations.” This one got a lot of coverage, but The Debrief had my favorite headline.
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Untangling Autism, Trauma, Aggression, and Parenting
People you should know
- In 2017, a few new words were added to the Māori lexicon to facilitate talking about mental health, addiction, and disability. Because Keri Opai, the person coordinating the effort, had an autistic friend he wanted to honor, a term to capture “autism” was among the additions. The word is Takiwātanga, which translates into English as “in their own time and space.” You can hear Opai pronounce the term here.
- A musical called “Let Me Fly” features the story of Sam, a nonspeaking autistic child who uses an augmentative adaptive communication device to communicate. The couple who wrote the musical are Cameron and AJ Cornell, who have an autistic son. AJ also is autistic, and in an interview about the show, she said that because she was diagnosed as an adult, “that was years and years and years [of] not understanding what was going on with my brain and why things were so much harder or painful.” Cameron, the nonautistic member of the family, said that he’s “had to do a lot of learning and a lot of self-reflection and a lot of unlearning of toxic nonsense that just kind of percolates in the atmosphere.”
Bits and bobs
- A movie in production called “Weekend Warriors” features Mark Wahlberg as a father who takes his autistic son to every NBA game so the son can decide which team is his favorite. The film is a remake of a German version called “Weekend Rebels” in which the duo attended all the games in a soccer league (football if you’re anywhere else on earth but the United States). The original material is an autobiographical book by Mirco and Jason von Juterczenka called “Wir Wochenendrebellen” (“We Weekend Rebels”). The boy who’s anticipated to play the autistic son in the US/NBA version of the film is Indie DesRoches, a young autistic actor and screen veteran who’s already appeared in several movies and television series. For some reason, Yakov Smirnoff also appears to be cast in the film.
Thanks for reading, and don’t let the bastards grind you down.
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About the Author
Dr. Emily Willingham is a 2022 MIT Knight Science Project Fellow, and the author of several books, including the upcoming If Your Adolescent Has Autism: An Essential Resource for Parents from Oxford University Press, and has served as a regular contributor to Scientific American and other national publications.
It’s called football in Canada, too