Alice Wong On Medicaid, Rage, and “Good Care”

Death, Sex & Money

Slate Podcasts

Business, Health & Fitness, Society & Culture, Careers, Relationships, Sexuality

4.6 • 7.6K Ratings

🗓️ 29 March 2023

⏱️ 45 minutes

🔗️ Recording | iTunes | RSS

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Summary

Anna first talked with disability rights activist Alice Wong in 2020 about self-advocacy, as well as how she manages money, Medicaid, and her and her parents' futures. But after a health crisis, Alice shared an update.

You can read more of Alice’s recent essays in Teen Vogue (https://www.teenvogue.com/story/alice-wong-hospitalization-crowdfunding-community), for CNN (https://www.cnn.com/2023/02/22/opinions/caregiver-advocacy-legislation-wong-ctrp/index.html), and on the Disability Visibility Project’s website (https://disabilityvisibilityproject.com/2022/08/07/my-icu-summer-a-photo-essay/).

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Transcript

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0:00.0	In the past, I identified as a disabled cyborg and now my body is even more of a cyborg
0:07.5	as I am tethered and power dependent on a number of machines to stay alive.
0:12.8	Knowing a power out of your malfunction can become a life or death situation can really
0:18.3	do a number on you.
0:23.6	This is Death Sex and Money.
0:28.0	The show from WNYC about the things we think about a lot and need to talk about more.
0:36.1	I'm in a sale.
0:43.5	I first talked with disability rights activist and writer Alice Wong back in 2020.
0:49.5	She just edited a collection of essays called Disability Visibility.
0:54.6	This then she's published another book, a memoir called Year of the Tiger, an Activist
0:59.9	Life.
1:00.9	It's unlike any other memoir I've read with a mix of writing and excerpts of talks and
1:06.2	interviews she's given, including an excerpt from her Death Sex and Money episode where
1:11.2	Alice told me with biting humor about the horrors of high school for her.
1:17.2	Just before that memoir came out, Alice had a major medical emergency and she ended up losing
1:23.5	the ability to speak and eat.
1:26.6	We want to share that original episode with you again this week.
1:30.1	We reached out to Alice for an update so we sent her a list of questions.
1:34.2	She recorded her responses using a text to speech app.
1:38.2	Last summer I had a series of medical crises that led to four weeks in the ICU.
1:44.6	It was one of the most harrowing experiences in my life.
1:49.1	I lost the ability to speak and eat.
	...

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