Bill Peace: A Professor Who Professed Disability Activism

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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.

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.)

Over a dozen people marching on a wide sidewalk pathway, with faces wearing white and/or red makeup, including two using wheelchairs, one with a white cane. Bill Peace is in the lead with a briefcase on his lap.

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

Mass. Assisted Suicide Legislative Briefing: “What Could Possibly Go Wrong?”

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Opponents of the Massachusetts assisted suicide bill ran out after distributing thirty information packets when about forty representative staff members attended a legislative briefing today (June 27). Sponsored by Democratic Representative Denise Provost, the briefing was entitled:

“End of Life Options” bills H. 1926 and S. 1208

What Could Possibly Go Wrong? Hear What Opponents Have To Say

Speakers covered a wide array of critical issues:

  • Rep. Denise Provost, “Who chooses end of life care? Substituted judgment doctrine in Massachusetts” (and guest speaker Professor George Annas)
  • John B. Kelly, Director, Second Thoughts MA, “If as a progressive you oppose capital punishment, you must oppose H.1926”
  • Anita Cameron, Not Dead Yet Director of Minority Outreach, “Impact on and opposition of minority and working-class communities”
  • Dr. Laura Petrillo, Palliative care physician/researcher, Mass General Hospital, “Suffering at the end of life: the right problem, the wrong solution”
  • Brian Shea, Peer Specialist, M-POWER, “Disability and depression under a broken, commodified healthcare system”

Below are a few photos from this very successful event.

Group photo of six presenters from left to right: Brian Shea (bearded white man, motorized wheelchair user), Anita Cameron (black woman with long dreadlocks and hot pink NDY t-shirt), John Kelly (white man, motorized wheelchair user), Rep. Denise Provost (white short haired woman in dress with black blazer), George Annas (guest speaker, bearded white man in black blazer) and Dr. Laura Petrillo (white woman with dark short sleeve dress and shoulder length dark hair).
John Kelly, a white man with gray hair in a white business shirt in a motorized wheelchair with a sip-and-puff control switch, speaking to an audience off camera, with an African-American man next to him and a woman with a video camera in the background.
Anita Cameron, a black woman with long dreadlocks and a hot pink NDY t-shirt, standing with her right hand on her chest and her left hand holding a paper by her side, with window blinds behind her and a couple audience members in the foreground.
Photo including a segment of about 15 audience members seated in folding chairs or lounge chairs, most with paper and pens.

Early Press & Testimony Opposing Mass. END of . . . Life-Options Bill

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John Kelly is on almost total doctor-ordered bed rest, which made for an especially compelling TV interview in advance of today’s press conference and committee testimony on the Massachusetts assisted suicide bill. Here are the links to both Boston Channel 25 news stories featuring John as an opponent of the bill:

Bill to help terminally-ill patients end life to be debated on Beacon Hill 

Public to weigh in on right-to-die legislation for terminally ill

This morning’s press conference was well attended, and NDY’s Anita Cameron posted a photo of the speakers on Facebook:

Nine people lined up to speak at press conference with podium in the center displaying name Massachusetts Alliance Against Doctor Prescribed Suicide.

Next: The Hearing. At least seven disability rights advocates were prepared to testify on one of two panels. The following are links to three of those testimonies with short excerpts from each.

John Kelly’s Testimony

Like most progressives, I strongly oppose capital punishment. We simply can’t stomach the fact that at least 4% of people sentenced to die are not guilty. We know that when there is a mistake, there’s no remedy.

H.1926 would in effect sentence to death non-dying people. Doctors misdiagnose all the time, and it’s estimated that 12 to-15% of people will outlive their six-month terminal diagnosis. . . .

And when more than half of suicide deaths in Oregon last year were reported to feel like a burden on others, we can see evidence of bullying, shame, and loss of options. When you read the title of the bill with different emphasis, it doesn’t mean options for the end-of-life but “the end [pause] of life-options.”

Ruthie Poole’s Testimony

Those of us in M-POWER know that depression is insidious in how it affects thinking. Against the new provision, we know that depression does impair judgment. As a therapist once told me, depression does not cause black and white thinking; it causes black and blacker thinking. Absolute hopelessness and seeing no way out are common feelings for those of us who have experienced severe depression. Personally, as someone who has been suicidal in the past, I can relate to the desire for “a painless and easy way out.” However, depression is treatable and reversible. Suicide is not.

We applaud the Joint Committee on Public Health and other members of the Legislature who have worked hard to expand funding for suicide prevention efforts. Passing this bill would be a slap in the face of those efforts. Suicide contagion is real. Any assisted suicide program will send the message to people in mental distress – old, young, physically ill or not – that suicide is a reasonable answer to life’s problems.

Anita Cameron’s Testimony

Although assisted suicide requests in Oregon (which this bill and others are modeled on) are lower among Blacks and people of color, that doesn’t mean that this won’t change in more diverse areas, especially as healthcare support lessens and assisted suicide becomes more acceptable due to the efforts of groups like Compassion and Choices. . . .

Further, doctors often make mistakes about whether a person is terminal or not. In June, 2009, while living in Washington state, my mother was determined to be in the final stages of Chronic Obstructive Pulmonary Disease and placed in hospice. Two months later, I was told that her body had begun the process of dying. My mother wanted to go home to Colorado to die, so the arrangements were made. A funny thing happened, though. Once she got there, her health began to improve!  Ten years later, she is still alive, lives in her own home in the community and is reasonably active.

John Kelly & Anita Cameron Begin A Busy Week Opposing Mass. Assisted Suicide Bill

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Tuesday, June 25 begins a busy week for disability advocates opposed to legalization of assisted suicide. The Massachusetts “End of Life Options Act” H.1926/S.1208 will be heard before the Joint Committee On Public Health. John Kelly, NDY’s New England Regional Director, and Anita Cameron, Director of Minority Outreach, are among several disability leaders planning to testify.

Details of three events at which disability advocates’ voices will be heard are listed below. Please support them by attending, submitting testimony, commenting on press coverage and otherwise adding your voices.

1. PRESS CONFERENCE from 9:30 AM-10:15 AM on Tuesday, June 25, before the hearing at the:

The University of Massachusetts Club
1 Beacon St., 32nd floor, Presidential Parlor Room
Boston, MA 02108

Speakers include Not Dead Yet Director Of Minority Outreach, Anita Cameron, Peer Specialist and M-POWER Board President, Ruthie Poole, palliative care physician Laura Petrillo, and John Kelly, Dir. of Second Thoughts MA: Disability Rights Advocates Against Assisted Suicide. Please come show your support.

From there, it is a  3 minute walk to go to the committee hearing, up the hill to the front of the state house at the Hooker entrance, for ambulatory people, and a 4 minute walk to the accessible entrance on Bowdoin Street.

2. COMMITTEE HEARING on H 1926, “The End Of Life Options Act,” is at 11 AM on Tuesday, June 25, in the Gardner Auditorium at the Statehouse. The capitol police can show you how to get there.

Doors to the auditorium will open at 10 AM.

There will be an overflow space in Nurses Hall on the 2nd floor. There may be a limit on how many wheelchairs at a time can fit into the Gardner. Oral testimony is limited to 3 minutes. There will be a sign up sheet at the Gardner Auditorium entrance. Written testimony can be longer, and should be sent to john.mahoney@mahouse.gov.

3. LEGISLATIVE BRIEFING on Thursday, June 27, 2 days after the hearing, in the House Members Lounge on the 3rd floor of the state house. It will run from 11 AM-12:30 PM.

Speakers are Rep. Denise Provost (D-Somerville), Anita Cameron , peer Specialist Brian Shea of M-POWER, Dr. Laura Petrillo, and John Kelly,

The most important event to come to is of course the hearing. There will be stickers for our side showing “no Assisted Suicide.”

Not Dead Yet Condemns Maine Governor’s Signing of Assisted Suicide Bill

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Not Dead Yet, the Resistance

Contacts:
Mike Reynolds 207-576-7396 (no voicemail; uppitycrip@gmail.com)
John Kelly 617-952-3302 (jkelly@notdeadyet.org)

Not Dead Yet Condemns Maine Governor’s Signing of Assisted Suicide Bill

(Augusta, ME) Long time Not Dead Yet disability activist Mike Reynolds condemned today’s signing of “An Act To Enact the Maine Death with Dignity Act” by Governor Janet Mills. “This is a terrible day in the history of Maine that will lead to the untimely deaths of disabled people due to inevitable mistakes, coercion and abuse.”

Reynolds had been scheduled to speak to the Governor’s staff today at 1:00 p.m. along with two others, but learned shortly beforehand that the call was cancelled. Reynolds had penned a recent op-ed in the Bangor Daily News on the issue. He had planned to report on yesterday’s decision by the American Medical Association to maintain it’s longstanding opposition to these bills. He would also have made the following points, which are all too rarely considered by policy makers.

1. When assisted suicide is legal, it’s the cheapest treatment available—an attractive option in our profit-driven healthcare system. If insurers deny, or even merely delay, expensive live-saving treatment, the person will be steered toward assisted suicide. Will insurers do the right thing, or the cheap thing? Examples already exist where this is legal.

2. Elder abuse, and abuse of people with disabilities, are a rising problem. One in ten elders are abused, usually by close family. Where assisted suicide is legal, an heir or abusive caregiver can suggest or steer someone towards assisted suicide, witness the request, pick up the lethal dose, and even give the drug — no independent witnesses are required at the death, so who would know?

3. Terminal diagnoses and prognoses are too often wrong, leading people to lose good years of their lives. And many people with chronic conditions and disabilities can become “terminal” simply by refusing or being denied coverage for essential medications or treatments like insulin or dialysis. This bill is not limited to the imminently dying.

4. The “safeguards” turn out to be truly hollow, with no real enforcement or investigation authority. And the legal immunities in the bill just require a claim of good faith compliance, not actual compliance, protecting everyone involved in the death except the patient.

5. Although assisted suicide proponents will say that it’s not about disability, the top 5 reported reasons for assisted suicide requests in Oregon throughout the years since legalization are all disability issues: “loss of autonomy” (90.6%), “less able to engage in activities” (89.1%), “loss of dignity” (74.4%), “losing control of bodily functions” (44.3%), and “burden on others” (44.8%). These are issues that many people face, not only those of us commonly considered disabled, but also seniors, people with chronic conditions, and people with advanced illnesses, including terminal illnesses. These reasons demonstrate that virtually all who die by lethal prescriptions in Oregon are disabled, in that they need assistance from another person for daily activities. Consumer directed home care would go a long way in actually helping people and families.

6. Evidence appears to show that assisted suicide laws also lead to suicide contagion, driving up the general suicide rate. For example, a CDC report reveals that from 1999-2010, suicide among those aged 35-64 increased 49% in Oregon, where assisted suicide has been legal the longest, as compared to a 28% increase nationally.