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Head and shoulders photo of Anita Cameron, an African American woman with long dreadlocks and brown sweater.

Not Dead Yet strongly supports the Disability Integration Act (HR 555 and S 117) which would give people with disabilities and seniors the civil right to receive attendant services and other supports at home, instead of in nursing facilities and other institutions.

It addresses many of the concerns of those who would feel they have no option but assisted suicide by assisting people to live, for whatever time they have, rather than assisting them to die.

The main reasons reported for people seeking the suicide drugs in Oregon were loss of autonomy, feelings of being a burden, loss of the ability to engage in activities, loss of the ability to control bodily functions and loss of dignity. These are disability issues, not just “end of life” issues. Attendant and other services and supports in one’s home are the solution to this, not doctor assisted suicide!

The Disability Integration Act would make it a requirement that insurance that pays for services in institutional settings must pay for them at home as well. For example, if one needs hospice services that are normally paid for in a hospital or nursing facility, the Disability Integration Act requires that insurance pay for people to receive that service at home. This would apply to both government and private insurance.

The Disability Integration Act would address the feelings of being a burden on one’s family by allowing people to receive services and supports they need in their own homes, thus taking pressure off of the family for the day to day care of someone deemed terminal. They can receive help to maintain independence and  to do things that they enjoy so that they can keep their sense of dignity.

As assisted suicide spreads to states with diverse populations, Blacks, people of color and poor people will be increasingly vulnerable to assisted suicide due to disparities in healthcare delivery, including discrimination in prevention, treatment and pain relief.

ADAPT logo: Free Our People top, wheelchair access symbol with arms up breaking chains center, ADAPT below

The Disability Integration Act had 42 cosponsors when it was reintroduced in the House in the 116th Congress on January 15, 2019, the 90th anniversary of the birth of Rev. Dr. Martin Luther King, Jr. At this writing, there are 232 cosponsors. The bill has a majority in the House, as well as the committees and subcommittees of jurisdiction. Over 850
national, state and local civil and human rights, faith based, justice reform, housing and disability organizations support this bipartisan, bicameral legislation. The bill has more than the 218 required cosponsors in the House, per the rules set forth by House Speaker, Nancy Pelosi.

Despite this, the Disability Integration Act has been blocked by Rep. Frank Pallone (D-NJ), Chair of the Energy and Commerce Committee. Neither he, nor his staff will give ADAPT a clear reason why he is doing this.

Please call your representative and ask that they support the Disability Integration Act. If they are already cosponsors, ask that they contact Rep. Pallone and ask for a hearing. The freedom and liberty of disabled people of all ages hangs in the balance.

For more information about the Disability Integration Act, visit www.disabilityintegrationact.org.

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John L’Heureux was a prolific writer and former Stanford professor who died April 22nd in California. His wife, Joan L’Heureux, initially told the New York Times that the cause was complications of Parkinson’s disease (1). Within a few days, though, the New Yorker published an essay by L’Heureux on why he would die by assisted suicide (2).

The piece, which was somewhat unimaginatively entitled “On Death and Dignity”, may have omitted salient facts. It is conceivable that he may have mischaracterized his wife’s stance. I have even considered the possibility that it was a hoax – one of L’Heureux’s more bizarre bits of fiction – but that seems unlikely since he did die when he said he planned to. The bottom line is that if L’Heureux’s death went down as he recounted, it is almost a textbook study on how these laws in and of themselves encourage suicide.

L’Heureux seems to have been a suggestible guy. He started college intent on becoming an actor but then his roommate out of nowhere said, “Why don’t you become a priest. You’re smart enough.” (3) L’Heureux became a Jesuit priest.

Some years later, he left the priesthood – not because he had problems with doctrine or with the Jesuits – but because he felt it was too hard to be the type of priest he wanted to be. Shortly thereafter, he married Joan, a former nun (4).

When L’Heureux acquired Parkinson’s disease (PD) as an older man, he was understandably concerned because his father had PD and ended up with cognitive decline and in a nursing home, fates that L’Heureux deemed inevitable. He referred to himself and his father as “parkies”. Yet, his literary career flourished. He continued to write novels and his short fiction appeared regularly in the New Yorker which he took as reassurance that he “was still compos mentis.” He obtained a contract to publish his new and selected stories as a collection subtitled “And Maketh Many Wild Leaps.” L’Heureux said that “my heart indeed made many wild leaps.” (5)

This all sounds like things were pretty good. Yet L’Heureux wrote that after another of his works was published, “I first looked into California’s death-with-dignity law. I found it hard to believe that the state was sanctioning a kind of suicide. Suicide? No, death with dignity.” (6) His focus on the law (which arguably did not even apply to him), the state and buzz words is telling. At another point in his essay, he said he was invoking the law as “justification” for his suicide. My guess is that the law whispered to him suggestively. Instead of “why don’t you become a priest”, it was “why don’t you kill yourself?”

L’Heureux discussed things with Joan and “we came to agree that, in this case, death sooner was better than death delayed.” (7) He did not say that Joan accepted or became resigned to his decision. Instead, they both agreed, he should die. Perhaps you could call it a unilateral suicide pact.

Next came a talk between L’Heureux and his doctor. “I reviewed for him my progress—I liked the irony of the term—from my half-assed stumbling walk to reliance on a cane, and then that sobering moment when I was forced to use a walker. That was where I was now. Next would come the wheelchair…” (8) The doctor told him that he still had enough brain matter to be of sound mind. L’Heureux took this as a compliment, although the practical effect of what the doctor said was that the doctor was not going to request a mental health evaluation.

“Thus my suicide began,” L’Heureux wrote dramatically. “Three home visits by two doctors—my primary physician and my neurologist—officially established my decision to die with dignity… I signed a formal document attesting to my decision, and it was co-signed and witnessed, according to the law.” (9) L’Heureux received his lethal prescription.

What’s wrong with this picture?

The main criteria of California’s assisted suicide law is that a person have a terminal illness which will, within reasonable medical judgment, result in death within six months. Yet, there is no mention in L’Heureux’s essay of his being at all close to death. He was just seemingly a man with a slowly progressive condition who like many people his age – he was 82 – used a walker and had some anxiety about the future. However, there is no clear mechanism in the law for enforcing the requirement that doctors determine that a person be in the end stage of an illness. It is sort of the honor system.

There is also the requirement that a person’s request must not arise from the undue influence of another. However, the doctor must only ascertain if the person “is feeling” unduly influenced. A person who is being influenced may not be aware of it. That is the nature of influence.

It is chilling to read of L’Heureux’s belief – a belief that apparently went unchallenged – that his suicide was “an agreed – upon act of love.” (10)

Many studies have established that people with PD have a higher suicidal ideation rate than the general population. In one study, suicidal ideation was present in 31% of participants with PD, compared with 16% of patients with psoriasis, and 2% of healthy controls. The authors recommended that “clinical assessment of PD patients should include a psychiatric evaluation investigating suicidal ideation and perceived disability”. (11) As with other groups, suicide among people with PD is a preventable tragedy.

Once L’Heureux had his lethal prescription, he and Joan discussed the date for what he called the Event. “Given the strain that all of this put on us…we chose sooner, rather than later. April 22nd, three weeks away.”

John L’Heureux died on that date. There may not have been anyone around with enough sway with him to suggest otherwise.

Footnotes

  1. https://www.nytimes.com/2019/04/25/obituaries/john-lheureux-dead.html
  2. https://www.newyorker.com/books/this-week-in-fiction/john-lheureux-05-06-19
  3. https://www.bostonglobe.com/metro/obituaries/2019/05/01/and-thus-suicide-began-prolific-author-john-heureux-wrote-his-final-essay-death-and-dignity/m4yqp88Bfb7RqSc1bFX0cM/story.html
  4. https://www.nytimes.com/2019/04/25/obituaries/john-lheureux-dead.html
  5. https://www.newyorker.com/books/this-week-in-fiction/john-lheureux-05-06-19
  6. Ibid.
  7. Ibid.
  8. Ibid.
  9. Ibid.
  10. Ibid.
  11. https://www.psychiatryadvisor.com/home/topics/neurocognitive-disorders/parkinsons-disease/correlates-of-increased-suicidal-ideation-in-parkinson-disease/
  12. New Yorker essay
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Fresh off their strong showing at the June 25 committee hearing on assisted suicide bill H.1926, disability rights advocates were featured in a Statehouse legislative briefing hosted by Rep. Denise Provost (D-Somerville). A few photos from the well attended briefing were posted here last week. Rep. Provost titled the talks “What Could Possibly Go Wrong? Hear What Opponents Have to Say.”

Anita Cameron, Not Dead Yet Director of Minority Outreach, introduced herself as someone with “multiple disabilities, two of which are degenerative, and one which will take my life.”

She said our “inherently racist” healthcare system delivers inferior care to BIPOC (Black, Indigenous and People Of Color), who experience worse outcomes “with heart conditions, diabetes, cancer, and chronic pain.” Disabled BIPOC received even worse treatment.

“As a Black Latina,” she said, “I could never wrap my head around the assisted suicide phenomenon. I thought that it was some odd thing that privileged White people were into. “

(This quote was picked up by the Cape Cod Times from Anita’s testimony at the committee hearing 2 days earlier.)

Anita told the amazing story of her mother, whom doctors pronounced imminently dying 10 years earlier. Anita’s mom moved back to Colorado to die, but instead revived and is now planning to increase her mobility with knee replacement surgery.

Anita summarized: “Because of the racist nature of our health care system and the tendency of doctors to devalue the lives of disabled and people of color, assisted suicide has no place as an option in Massachusetts.”

John Kelly, Not Dead Yet New England Regional Director, backed up Anita’s talk with slides showing the geographic and class divide evident in the voting patterns for the 2012 ballot question on assisted suicide. Wealthier and whiter parts of the state, such as in Western Mass and Newton, voted strongly yes, while more working class communities, whether majority Latino and black like Lawrence and Springfield, or white like Gardner and Taunton, voted heavily against.

John, who is also the Director of Second Thoughts MA, emphasized that patients under assisted suicide programs are disabled and are reported as desiring death precisely because of their “existential distress” about depending on other people for activities of daily living, which made them feel undignified and like a burden.

John then explained how assisted suicide is like a death penalty, which progressives overall oppose because of the estimated 4% of innocent people sentenced to death. With assisted suicide laws, at least 12%-15% of people who enter six-month hospice will outlive the program. Non-dying people will inevitably get pushed towards death, first by doctor’s mistakes, second by insurance greed, and third by intimate abuse and violence.

Oregonian Jeanette Hall serves as an example of the first group. When Jeanette was diagnosed terminal, she sought assisted suicide, only to be persuaded by her doctor to try more treatment. Alive 19 years later, Jeanette urged Massachusetts in a 2011 letter to the Boston Globe not to make Oregon’s mistake by passing an assisted suicide bill.

A second group of people will get herded toward death because of finances, whether by denial of treatment by insurance companies, or the inability to pay; and a third group will pay the ultimate penalty because of persuasion and bullying, the shame of feeling like a burden, and straight up murder for gain.

John also corrected the falsehood continually pushed by assisted suicide proponents that there have been no abuses in Oregon. He referred to 16 pages of problems included in attendees’ packet of materials, and highlighted the case of Wendy Melcher, whose killers received a tap on the wrist from the Oregon nursing board and no involvement from civil authorities.

Peer Specialist Brian Shea represented M-POWER, a grassroots group of people with lived experience of mental health diagnoses, trauma, and addiction. As someone who has experienced deep depression, Brian described the choice of getting on a bus or driving his wheelchair in front of it. He said that the law’s required mental health consultation would be easy to game by pretending for 50 minutes not to be depressed. There would be no way to remedy mistakes, as the state would descend into “barbarism” by throwing away some of its least valued residents.

Palliative care physician Laura Petrillo, who when living in California had strongly opposed its assisted suicide bill, emphasized that palliative care can control people’s pain and help guide them through a process full of meaning and connection. Laura responded to audience questions about “pain and suffering” with the tenets of palliative care and a call for state expansion of palliative care training.

Rep. Provost began the briefing by inviting Boston University law professor George Annas to discuss the strong role that “substituted judgment” plays in Massachusetts treatment decisions for incapable residents. Once death by assisted suicide is understood as a “benefit,” it will be extended to people who – if they were capable – would reasonably be thought to choose death over treatment.

And a big thanks to disability advocates John Robinson, Don Summerfield, Sandy Durmaskin, and David Rolde, who came out in support of the briefing, and to Patients Rights Action Fund Executive Director Matt Valliere, who helped manage logistics and coordinate speakers at the hearing and a press conference on June 25.

— John Kelly

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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)

EZ Breezy Assisted Suicide w/ Bill Peace - YouTube

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

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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”
  • 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.
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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.

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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.”

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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.

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VETO LD 1313, An Act “To Enact the Maine Death with Dignity Act”

Dear Governor Mills:

The disability community appeals to you to veto LD 1313, which would legalize a public policy of assisted suicide.

Many people are unaware of the fact that every major national disability organization that has taken a position on assisted suicide laws opposes them. These include over a dozen prominent groups, many of which have undersigned this urgent appeal:

  • ADAPT
  • American Association of People with Disabilities
  • Assn of Programs for Rural Independent Living
  • Autistic Self Advocacy Network
  • Disability Rights Education and Defense Fund
  • National Council on Disability
  • National Council on Independent Living
  • National Organization of Nurses with Disabilities
  • National Spinal Cord Injury Association
  • Not Dead Yet
  • TASH
  • The Arc of the United States
  • United Spinal Association

Our reasons for opposing assisted suicide laws are many. Most of them are illustrated by these documented examples of significant problems which occurred in states that have courted the danger of a law based on Oregon’s “death with dignity” Act. These examples are available at https://dredf.org/wp-content/uploads/2015/04/Revised-OR-WA-Abuses.pdf.

When assisted suicide is legal, it’s the cheapest treatment available—an attractive option in our profit-driven healthcare system. Bitter experiences has shown that insurers are denying expensive life-sustaining treatment but offering lethal drugs instead.

Terminal diagnoses and prognoses are too often wrong, leading people to lose good years of their lives. If one doctor says “no,” people can “doctor shop” for a “yes,” regardless of their actual legal eligibility. The highly touted “safeguards” turn out to be truly hollow, with no real enforcement or investigation authority. Assisted suicide is a prescription for abuse: an heir or abusive caregiver can steer someone towards assisted suicide, witness the request, pick up the lethal dose, and in the end, even administer the drug—no disinterested witness is required at the death, so who would know?

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.

Finally, 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%). (The same reports show that every year except the first, some of those who died by lethal prescription were not terminal within six months.)

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.

As people who have fought for the civil rights and equal protection of all people with disabilities, we in the undersigned organizations understand that our society is permeated with negative stereotypes about disability. Award winning movies deliver the message that it’s “better to be dead than disabled.” We understand the shame people are taught to feel if they become disabled, the pressure to hide that we need help, the guilt for “inconveniencing” others.

There are ways to address the reasons people have for requesting assisted suicide, but it starts with a societal commitment to treat all suicides as a tragedy, to respond to anyone’s expression of suicidal feelings with an equal level of support, affirmation of the value of their life and effort to address their concerns. A two-tiered system where most people get suicide prevention but certain people get suicide assistance is a deadly form of discrimination that should not be accepted. Assisted suicide laws exacerbate the disability stigma that prevails in our culture and undermine people’s genuine autonomy by establishing a medically administered program of suicide approval and assistance in a health care environment already riddled with pressures to cut costs of care.

Assisted suicide is bad medicine for Maine. We hope that this information is helpful in your consideration of this life and death public policy issue, and would welcome the opportunity to communicate about this further.

Sincerely,

Diane Coleman, JD, MBA
President/CEO
Not Dead Yet
497 State Street
Rochester, NY 14608
708-420-0539 C
www.notdeadyet.org

ON BEHALF OF:

ADAPT
American Association of People with Disabilities
Association of Programs for Rural Independent Living
Disability Rights Education & Defense Fund
National Council on Independent Living
Not Dead Yet
TASH: Equity, Opportunity, and Inclusion for People with Disabilities Since 1975
United Spinal Association

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Contact:
Matille Thebolt: mthebolt@CRCPublicRelations.com
or
Emily Degnan: edegnan@crcpublicrelations.com
703-683-5004

***Media Advisory***

Patient and Disability Rights Advocates Hold Press Conference to

Warn of the Dangers of Assisted Suicide

What:                      Patient and disability rights advocates will hold a news conference to warn of the dangers of legalized assisted suicide in their state. Assembly Bill A2694 and Senate Bill S3947 are currently in their respective Health Committees.

Who:                        Kristen Hanson, Patients Rights Action Fund
Meghan Parker, New York Association on Independent Living
Stephanie Woodward, ADAPT and Not Dead Yet
Kathryn Carroll, Center for Disability Rights
Clifton Perez, Independent Living Center of the Hudson Valley
(see bios below)

When:                     Wednesday, May 29th at 2:00pm ET

Where:                    Legislative Office Building, Room 130, 198 State St, Albany, NY 12210

Bios of Speakers:

Kristen Hanson is the Community Relations Advocate at the Patients Rights Action Fund. She is the widow of JJ Hanson who passed away from glioblastoma multiform. JJ was a staunch opponent to assisted suicide as he battled his illness. Kristen now continues JJ’s work speaking out against the dangers and abuses of assisted suicide.

Meghan Parker is the Director of Advocacy for the New York Association on Independent Living (NYAIL). NYAIL is a statewide membership organization created by and composed of Independent Living Centers across New York State. Independent Living Centers are unique disability-led, cross-disability, locally administered not-for-profit organizations, providing advocacy and supports to assist people with disabilities of all ages to live independently and fully integrated in their communities. In her role as Director of Advocacy, Parker coordinates the Statewide Systems Advocacy Network, which advocates for the full inclusion and civil rights of people with disabilities in New York State. Prior to her work at NYAIL, Parker was the Deputy Director of Westchester Disabled On the Move, a Yonkers-based Independent Living Center. She began her career working in constituent services for her local Congresswoman, Nita Lowey. Parker is blind and has spent her professional life advocating for the civil rights of people with disabilities.

Woman with long reddish blond hair and serious expression seated in wheelchair with hot pink trim and wearing hot pink Not Dead Yet and jeans with hands folded in her lap.

Stephanie Woodward is the Director of Advocacy at the Center for Disability Rights (CDR). Stephanie attended Syracuse University College of Law where she earned her J.D. with a certificate in Disability Law and Policy and her M.S.Ed. in Disability Studies. Prior to her work at CDR, Stephanie worked as a litigator in Miami, Florida focusing on Disability Rights law. Stephanie is a proud disabled person and member of ADAPT, a national grass-roots community that organizes to assure the civil and human rights of people with disabilities to live in freedom. Stephanie has been arrested multiple times while advocating for Disability Rights. While Stephanie’s work spans across all areas of Disability Rights, she is particularly interested in deinstitutionalization, community living, ending violence against people with disabilities, and improving access in the community.

Kathryn Carroll is a disability rights advocate and is Manager of Government Affairs for the Center for Disability Rights. The Center for Disability Rights is a disability-led not-for-profit organization which advocates for the civil rights, independence, and community integration of disabled people. Kathryn handles policy matters which range from advocating for adequate healthcare services and supports, access to complex rehabilitation technology, increasing accessible affordable housing and transportation and more. She is an attorney and is committed to bringing about inclusion and acceptance of disabled people in the community. She is a member of Capital Region ADAPT.

Clifton (Cliff) Perez of Troy, New York has been working in the field of advocacy to enhance and defend the rights of people with disabilities since 1985. He holds a Master’s Degree in social work from the University of Stony Brook NY, and currently serves as the Systems Advocate for the Independent Living Center of the Hudson Valley. In 2018, he was nominated and was inducted to the first established NYSILC NYS Disability Rights Hall of Fame. In the same year he was nominated and selected as an HVCC Outstanding Alumni Award winner.

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