Curious Bioethics Feb 27-March 4, 2023

Judy Heumann dies, Child Marriage Laws & Covid Complications

Hey Curious Human!

This week’s bioethics roundup is all about:

• The passing of disability rights advocate Judy Heumann

• Bioethics News: U.S. child marriage laws, transgender erasure, abortion pills, and Covid.

• Education and writing opportunities

Disability Rights Badass Judy Heumann (1947-2023)

Yesterday via Twitter, I was sad to learn that Judy Heumann died at age 75. She was an internationally recognized leader in the disability rights community. Here is the statement from her website.

“Some people say that what I did changed the world. But really, I simply refused to accept what I was told about who I could be.

And I was willing to make a fuss about it.” - Judy Heumann

Heumann, who used a wheelchair due to complications from polio, was denied access to public school due to her wheelchair being a fire hazard. Throughout her life, she fought to be included in American social, political, and economic life.

If you haven’t already watched Crip Camp: A Disability Revolution on Netflix, I hope you will. It’s a phenomenal documentary of teenagers in the 1970s who attended Camp Jened, a camp for disabled teens in the Catskills. You get to see Judy Huemann as a fierce, funny young adult. The experiences and relationships built at the camp sho an early foundation for the disability community to fight for section 504 of the Rehabilitation Act and pave the way for the Americans with Disabilities Act (1990).

Here’s the preview:

Judy Heumann’s books include Being Heumann: An Unrepentant memoir of a disability rights activist and Rolling Warrior: The incredible, sometimes awkward, true story of a rebel girl on wheels who helped spark a revolution. In honor of Judy’s legacy, Alice Wong at

Disability Visibility

is giving 25 copies of Judy’s memoir to disabled persons. More info here.

Book cover of Being Heumann: An Unrepentant Memoir of a Disability Rights Activist by Judith Heumann and Kristen Joiner. The background is a yellow-orange color and in the center is a black and white image of Judith, a white Jewish disabled woman in a wheelchair. She has dark hair and is wearing glasses. One of her hands is resting under her chin. Around Judith are illustrations of colorful flowers. (text from Disability Visibility)

Book cover of Rolling Warrior: The Incredible, Sometimes Awkward, True Story of a Rebel Girl on Wheels Who Helped Spark a Revolution by Judith Heumann and Kristen Joiner. The background is a red-orange color and in the center is a hand drawn image of a young Judith, a white Jewish disabled woman in a wheelchair. She is holding a sign “Rights Now!” She has brown hair and is wearing glasses, a yellow polka dot shirt and blue-green skirt, yellow bowed shoes. One of her hands is resting under her chin.

Here’s Judy on the TED stage in 2018: Our Fight for Disability Rights — And Why We’re Not Done Yet

On a funny note, check out Drunk History’s interpretation of Judy’s fight for 504 protections.

Judy Heumann was a magnificent force that shaped America through her advocacy. She will be missed.

Bioethics News

Here’s what else is happening in bioethics that you should know about this week:

Child Marriage

• This week on Poppies & Propofol, I wrote about America’s child marriage problem.

• Thankfully, two states passed bills prohibiting underage marriage, without exception: West Virginia and Vermont (these bills are not yet signed into law)

• In West Virginia, children can marry as young as 16 with parental consent. Anyone younger than that must also get a judge’s waiver.

• Under existing law, 16 and 17-year-olds in Vermont can get married with the consent of one parent. The child doesn’t have to consent or agree.

Abortion Pills & Pharmacies

• Walgreens won’t distribute abortion pills in states where GOP Attorney Generals object: Walgreens has indicated that they will not dispense mifepristone, even in several states where early abortion is legal (including Alaska, Iowa, Kansas, and Montana). This is just one more example of partisan forces getting in the way of access to safe and effective healthcare. Medication abortion with mifepristone is the most common form of abortion in the U.S., and multi-year data shows it’s safe to take without a doctor’s visit.

Transgender Rights

• Transphobia at CPAC: conservative speaker Michael Knowles called for the "eradication” of “transgenderism” arguing being trans is “not a legitimate category of being.” For anyone missing the message, this is a call for erasure and genocide of transgender people. It’s also completely in alignment with other right-wing bans on drag shows, transgender healthcare, and bans on trans people using the bathroom in alignment with their gender identity.

via Twitter: Alejanra Caraballo @Esqueer_: Michael Knowles is openly calling for genocide against trans people at CPAC. "Transgenderism must be eradicated from public life entirely." with video clip from CPAC event

• Disability Rights include Transgender People: When we allow political groups to attack the existence of transgender humans and their ability to receive care and participate in society, we are also attacking disability protections. In August 2022, the U.S. Fourth Circuit Court of Appeals affirmed transgender people are protected under the Americans with Disabilities Act. Here’s a piece from the Harvard Law Review blog, discussing the important overlapping interests of people with disabilities and transgender people.

COVID

• California to alter COVID rules in healthcare settings: Masks and vaccinations not required: California recently ended its state of emergency and is now removing requirements for masks and vaccination in high-risk settings, including hospitals, prisons/jails, detention centers, and homeless shelters. As a healthcare worker in California, this is a perplexing change, given that we just went through a miserable triple-demic of COVID + influenza + RSV. I plan to continue to wear a mask at work and in crowded indoor spaces.

• Post-Covid Heart Attacks and Strokes: A new paper in JAMA Health Forum addresses one-year outcomes after Covid infection. (Dr. Eric Topol at

  Ground Truths breaks down several recent papers and their data here.) I continue to be struck by the limited acknowledgment in healthcare and society about the wave of post-infection disabilities this country faces.

Education Resources:

1. Unchained at Last presents Unseen Housewives on March 10, 2023, virtual and in-person

   

   Advertisement for Unseen Housewives screening: Unseen Housewives: The Shocking “Trailer” That Aims to Cancel America’s Child Marriage Show, An Unchained At Last (Hybrid) Parallel Event, 67th Session of the United Nations’ Commission on the Status of Women, 10 March 2023, 2:30 p.m. ET – 3:30 p.m. ET | 11:30 a.m. PT – 12:30 p.m. PT | 7:30 p.m. GMT – 8:30 p.m. GMT

2. ProPublica’s Post-Roe: Today’s Abortion Landscape - I recommended this event last week. Unfortunately, it was canceled at the last minute. I’ll do my best to let you know when it’s rescheduled.

Writing Opportunities

The Narrative Inquiry in Bioethics’ is collecting stories for Healthcare Under Fire: Stories from Healthcare Workers During Armed Conflict. If you have a story to share, learn more here.

That’s it!

As always, thanks for reading Curious Bioethics.

Hit reply and let me know what you’re most curious about this week—I’d love to hear from you!

See you next week!

Be well & Be Curious,

Alyssa

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