Disability activist and academic Bill Peace died in his home last week, surrounded by his family. He was 59. It’s taken me a few days to figure out what I want to say about his death…I didn’t realize that he was so sick.

Content Warnings: Ableism (airline, medical), Ashley treatment, assisted death, cancer, death (friend, colleague, mentor, parent, loved one), health care system, hospitals, illness, politics, social attitudes toward disability, wounds and wound care

“I hate wound care. These appointments have always made me anxious in the extreme. There is always the possibility for disastrous news. That news could mean immediate hospitalization, surgical debridement, or being told not to sit up for weeks or months. While I look at my wounds daily, note plural, it is impossible to get an accurate sense of how they are doing. And yes I now have more than one wound. This is very common. In not sitting up for months on end I am over compensating and putting more pressure on other areas of my body that would not normally break down. “

Bill Peace, April 10

Diagnosed with a rare neurological condition when he was 9 years old Bill Peace was paraplegic and a full-time wheelchair by the time he’d graduated from high school. However, he got his PhD in Cultural Anthropology and became a highly respected academic, professor, writer, and speaker – and, not surprisingly, disability activist, as much this went on in a pre-ADA America where he’d have had to fight fiercely for the accommodations that he needed.

Bill died of complications due to pressure sores that then became open wounds. He went through a horrible ordeal that shouldn’t have happened, and talks openly about it in two heart-wrenching posts on his blog, “Bad Cripple.”

Wound Care Woes – April 10, 2019

Worse Wound Care Woes – April 24, 2019

Despite having to spend a few weeks in bed after my stroke, and spending most of my time in a wheelchair for the early part of my rehabilitation, I never had to deal with pressure sores or the wounds that can come from them. I’m very lucky – very privileged.

Bill Peace’s Legacy

You only need to look at what’s been posted to Bill’s Facebook page since his death to see how many people he’s touched. Tributes from colleagues from all over the world, many of whom, like me, had never met Bill Peace in person, talk about how he influenced them as an academic, an activist, a writer, a mentor, a friend…as I said, I never met Bill, but soon after I started blogging, I quickly became a fan of his blog – it’s referenced in this blog several times, and I believe that I got a shout-out or two in his blog (much to my delight.) I was only learning about the disability movement when I started reading Bill Peace’s work. Here are some of the things that he taught me about:

• The Ashley Treatment – The practice of attenuating the growth of a physically and intellectually disabled female child, including removal of breast bud tissue, to reduce the additional physical stress on caregivers that caring for adult disabled children can bring. The Ashley Treatment also includes sterilization. Named for the young woman who first received this very controversial “treatment”, about which Bill had much to say.
• Abilism by Airlines – I never had to fly during the period when I used my wheelchair. Bill Peace opened my eyes to the horrifying way that wheelchair users are treated by airlines, prompting several blog posts. His comment about how “more than once I have crawled out of a plane in frustration and anger” will always stay with me.
• Why Assisted Death Laws Are Dangerous for Disabled People – I never corresponded about this with Bill. I never felt any real need to. Despite disagreeing with him that disabled people need to fight assisted death laws, I understood that he had his own very personal reasons for feeling the way he did on this issue, just as I have my own very personal reasons for feeling that everyone should have the right to an assisted death, should they choose. Reading his arguments did make me think about the safeguards that need to exist within assisted death legislation so that disabled people remain safe, and in discussions with non-disabled people, when I talk about the need for these safeguards, it’s what I learned from Bill Peace that informs my arguments.

I can now add two more things to that list of things that Bill taught me about: why the idea of getting a pressure sore is so terrifying to people in the US who use wheelchairs, and how the US medical system is utterly unprepared to meet the healing needs on pretty much any level of those that do, even those with good insurance…and it breaks my heart and makes me so angry…

Story time.

When a Parent is Sick

Forgive me for this; I am going somewhere with it.

My mother started to cough when I came home for Easter break during first year university, and was too sick to work soon after my school year ended that May. Diagnosed with cancer not long after, she was taken by ambulance to Toronto for more testing and treatment. She was 52, just seven years younger than Bill Peace was when he died.

She was very weak at this point. She died after six weeks in Mount Sinai Hospital’s ICU, where her medical team had been doing their damnedest to get her strong enough to transfer to Princess Margaret Hospital, just next door, which specializes in cancer treatment and recovery. She died of a blood infection that she contracted in the hospital, but I’ve never felt angry at the team treating her at Mount Sinai; there are no guarantees in medicine, and I watched her medical team – I never doubted for a moment that her nurses and doctors were giving her the best care they could.

Sidebar: I can’t count the number of nurses that my family’s time in hospitals has put me in contact with, and while I admit that I can’t speak for the rest of my family, I have had memorably bad experiences (and when I say “memorably bad” I’m talking about incidents that where the nurse was so out of line that I either complained to hospital administration or someone else did on my behalf) with *exactly* three, and none of them worked at Mount Sinai Hospital. Doctors? I’ve seen a lot of them. There are two that I clashed with badly enough that I requested at the time not to see them again. Fine doctors – just not good matches with me, personality-wise. I can get along with pretty much anyone, so we were significantly mismatched.

Long story short – I have such respect Canada’s health care professionals and gratitude for the care that my loved ones and I have received from them. It’s not everyone’s experience, unfortunately, but it’s unequivocally been mine. There’s a lot about our system that doesn’t work, but they are, in my opinion, what makes it great. And yes, American friends, I don’t mind that my taxes go toward making sure that this care is available to all Canadians. We could focus our energy on Mom during her time in the hospital, and not on worries about paying for her care, and if believing that this experience should be available to everyone makes me a socialist, then call me a fucking socialist. Sorry, not sorry.

Because Bill Peace has a son, and I’ve spent the last week trying to put myself in his shoes as he watched his father’s wound care experience: seeing his father in physical pain that no one was addressing, his depression going untreated, his anxieties about paying for his care increasing, the general apathy on the part of his wound care team about his situation…and I wonder how he coped. It’s hard enough to watch a loved one struggle with a serious medical condition….especially a parent…knowing that they’re receiving great care and that everything that can medically be done to get them well again is being done…

I’ve had the privilege this year of being able to hear many health care providers in the US talk about their work and why they do it – like their colleagues in the Canadian system, they are skilled, dedicated, and devoted to patient care. So why didn’t Bill Peace get the wound care that he needed to get better? I can’t wrap my head or my heart around it.

Not that Canada hasn’t got work to do in this area as well.

Obviously

Bill Peace – Bottom Line

Bill’s death just hits hard. He should have had lots of time left, to travel, to contribute even more to the academic world that he loved…

My sincerest condolences to Bill’s family and loved ones, and my apologies for getting political. There are so many people here in the North that care about what’s happening to disabled people in America…and we don’t know how to help.

Rest well, Bill. Thank you.

This is a miserable way to die. It is a human rights disaster that has befallen many a paralyzed person.

Bill Peace, April 24

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