Tuesday, July 2, 2019

Bill Peace: A Professor Who Professed Disability Activism

Published by Not Dead Yet on July 2, 2019

By Diane Coleman

By now, many who read this message will know that Bill Peace died not long after midnight this morning. In the hours since, the outpouring of both grief over our loss and celebration of his life is nothing short of incredible. He has been one of an increasingly rare breed of academics who embrace disability activism. The countless lives he touched – his students, his colleagues, his friends, his family (his personal family and very extended disability family) – are a testament to his amazing ability to communicate and advocate for our fundamental civil rights.

Bill’s Facebook page is full of memories and tributes today, including stories and articles, like this wonderful profile in New Mobility Magazine. Here’s an excerpt concerning his work on bioethics issues:
The Underlying Problem: Devalued Lives 
In 2006, Peace’s career took a sharp turn after he read about the Ashley treatment. The treatment was a series of procedures performed, at the request of her parents, on a Seattle child with developmental disabilities named “Ashley X.” The surgeries were intended to stunt her growth, eliminate menstruation and prevent her from developing large breasts. 
It was a wake up call for Peace. “It wasn’t what they did that was horrible, it was that there was a 38-person bioethics meeting at one of the leading children’s hospitals in the nation, and they gave it the go-ahead,” he says. “They illegally sterilized a profoundly disabled child.” Soon after, he began work in bioethics and disability studies, while becoming a harsh critic of the cure industry. 
Little did Peace know, but his work in bioethics would hit very close to home. In 2010, he was hospitalized with a stage IV pressure sore. After an especially difficult debridement, a hospitalist encouraged him to discontinue the aggressive treatment and pursue end-of-life care. Peace refused the offer but the experience shattered him. “Somebody I had never met determined my life wasn’t worth living,” he says. 
It took almost two years to heal the wound, but Peace vowed to advocate against assisted suicide. The reason for doing so was simple. “People are needlessly dying, and there’s no nuanced view of disability within the medical community,” he says. He joined the board of directors of the advocacy group Not Dead Yet, and since then has become a leading national critic of the practice of assisted suicide.
Bill joined the NDY board in 2013. The year before, NDY reported on his groundbreaking article in a leading bioethics journal about that middle-of-the-night visit from a hospital physician recommending that he consider dying rather than receiving antibiotics for his pressure wound. The journal article is now behind a pay wall, but excerpts remain available in the NDY blogs and Bill told the story in his Bad Cripple Blog.

Bill Peace in the front.
The New Mobility article also included a great example of Bill’s activism following a workshop he did entitled “The Walking Dead and Assisted Suicide”, when he “led a procession of fellow scholars dressed as zombies across the Syracuse University campus.” (Photo by Stephen Sartori.)

Recently, complications developed from new pressure wounds, but the hospital that cared for him in these last several days was described by his family as respectful, showing the utmost kindness and trying very hard to save him from the infection that has taken him from us.

Months ago, if insurance had been willing to cover the type of therapeutic bed he needed to help heal the wounds, he might have made it through. I suspect it would have cost insurance much less than a week in an intensive care unit. Outrageous insurance decisions like this are killing people with disabilities. We lost Carrie Lucas in February this year, and now Bill. We’ll never know how many others, but this can never be acceptable and must stop!

Bill repeatedly challenged society’s “better dead than disabled” message. Stephen Drake, NDY’s research analyst, covered examples like these (note: some of the embedded links may not work anymore):
For more of NDY’s blogs featuring Bill’s work, go here.

And for links to some of Bill’s Bad Cripple Blogs on NDY issues, many are listed on our articles page.

One of our favorite pieces is this great video satire:
YouTube: EZ Breezy Assisted Suicide w/ Bill Peace (and Tipsy Tullivan)
Bill Peace has left all of us a rich legacy spanning decades during this critical time for the disability rights movement. He will be deeply missed, and he won’t be forgotten.

Diane Coleman


Adelaide Dupont said...

When I learnt from Cal Montgomery and Ruti Regan that Peace had died ...

He really did practice what he preached.

*Bloody* sepsis! And what I have to say about the health care non-system is unprintable.

Hoping to transfer that grief and that anger into something.

All the things Peace will not see and do like the 2020 election.

His last days in Denver ... the campaigns and advertisements he skewered ...

the learnings about rights and the mixed record of Syracuse where he had spent so much of his career.

Thinking of Tom and the grandchild and other people in Peace's family and all his connections.

Alice Dreger said...

I am so very sorry to hear this. Bill was a wonderful person and scholar.

Please not that you can read Bill's "Head Nurses" article here: http://alicedreger.com/sites/default/files/Peace%20and%20Kirschner%20in%20Bad%20Girls.pdf

Anonymous said...

Anyplace someone could donate $ for a therapeutic bed? I have recently suffered two family member losses that have also opened my eyes regarding our insurance/medical care issues.

Diane Coleman said...

Bill Peace was also interviewed for the Fatal Flaws film (https://fatalflawsfilm.com/) regarding his experience with the hospitalist who urged him to decline treatment for a life threatening pressure wound. The film trailer opens with a scene from Bill's interview.

Marilyn Kaufman said...

Bill and my daughter went to college together in the 1980's. Because we lived near his home, Bill was my daughter's "ride" home. When they arrived, Bill came into the house and stayed for a "bite" to eat and GREAT conversation. Thinking of those days, I am smiling! Bill always had a comment and opinion to share and he was, at that young age, right on point! I know Bill has left his mark on so many people and I wish to add my condolences and support to all who had the privilege to know Bill and read his words and share his life. He will be missed.