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.

An Open Letter to Maine Governor Mills: Veto Assisted Suicide Law LD 1313

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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
United States International Council on Disabilities

Stephanie Woodward Will Represent NDY and ADAPT at Albany Press Conference

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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.

###

We’ve Lost A Strong and Gentle Warrior Hero – Bob Liston

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Bob Liston, a white man with a mustache and trimmed beard, a dark green canvas hat with an ADAPT patch, and a gray bandana around his neck.

Within three weeks of Not Dead Yet’s beginning on April 27, 1996, National ADAPT held a series of protests for home and community based long term services. During a moment of down time, I sat with Bob Liston, Marsha Katz and several other ADAPT activists to plan for our first protest against “Dr. Death,” Jack Kevorkian. (For those who don’t know this, two thirds of his assisted suicide body count consisted of people with disabilities who were not terminally ill.)

Bob and Marsha lived in Michigan and helped in immeasurable ways to host both instate and out-of-state NDY activists. The first NDY protest was held on June 21, 1996, behind the lakeside cottage that Kevorkian was living in. NDY’s first national press coverage was an Associated Press photo which prominently featured Bob, looking strong and determined, the perfect image of our fight for equal protection of the law.

During the years that followed, with Bob and Marsha’s support, we returned to Michigan again and again to demand that the courts “Jail Jack,” until Kevorkian was finally convicted and imprisoned for the lethal injection euthanasia of Thomas Youk. We also confronted a bioethics conference held in Lansing, and a pro-assisted suicide conference held in Ann Arbor by the Hemlock Society, which later helped fund Kevorkian’s legal defense (and eventually morphed into “Compassion and Choices”). Bob and Marsha also helped defeat assisted suicide in the Michigan legislature.

A true “power couple,” Bob and Marsha helped with lodging and transportation arrangements, making signs and flyers, press work and the countless behind the scenes tasks involved in direct action for social justice. They never sought credit for their generosity of time, their insights and their kindness. Bob was a fierce advocate with a gentle and ever present sense of humor.

In time, Bob and Marsha moved to his home state of Montana, and years later in 2017, Bob joined the NDY Board. Here’s a biographical sketch about Bob that concentrates on the years in Montana, and below that, two of my favorite photos that people have posted these last two days:

Bob Liston was an original member of Not Dead Yet, and participated in multiple actions in Michigan against Jack Kevorkian, the Hemlock Society, an Ethics conference and the Michigan Legislature when it sought, and failed, to pass a law permitting assisted suicide.

Bob retired in 2016 from the Rural Institute at the University of Montana where he worked with CILs across the country as part of disability research, education and services. He was formerly the Executive Director of Montana Fair Housing, which received more complaints from persons with disabilities than any other protected class. Born and raised in Montana, at age 16 Bob sustained a spinal cord injury as the result of being an “invincible teenager” (auto accident.) He has used a wheelchair since 1971.

Bob has also been a small business owner, and worked for the Montana state government in several capacities, one as the staff person to Montana’s “Governor’s Committee on Employment of the Handicapped” in the early ’80’s. Bob has been involved with several Independent Living Centers in Montana as a peer, board member, board president and consultant. He also served two terms on the Montana Statewide Independent Living Council, and is a past board member and board president of the Montana Disability Rights Network, and board member and Vice Chair for the National Fair Housing Alliance.

Bob is also an active member of both ADAPT and NDY, and proudly “does what it takes” to make change for persons with disabilities.

Photo (by Tom Olin) of Bob Liston, a white man with brown curly hair wearing a Not Dead Yet t-shirt. He is looking out with a strong expression from behind bars of what could be a bus doorway or behind a fence. A white woman with glasses, Eleanor Smith, sits behind him and there are cars in the background on either side of the photo.
Photo of Bob Liston, a white man with a red hat, glasses and an ADA t-shirt holding a microphone, and Marsha Katz, a white woman with long white hair, earrings and glasses, both smiling, with the number 25 on a brown curtain behind them.

Update: Minnesota Hospital Agrees to Continue Oxygen for Catie

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Good news! Following intervention by attorneys, the Minnesota hospital that we previously reported had planned to stop providing oxygen to a woman with lung cancer decided to follow her wishes to continue treatment. This goes to show, as so many people with disabilities have experienced, that when there’s a power imbalance operating against you, get legal/advocate help to tip the scales and, hopefully, secure compliance with the law. Below is the public statement issued by Life Legal Defense.

Reprieve for Catie: Hospital will not pull the plug

May 1, 2019

Thank you SO MUCH to all who showed up for Catie by getting the word out and calling the hospital. You are AMAZING! We have learned that the hospital is not going to remove Catie’s oxygen. They agreed to abide by her wishes and the wishes of her health care proxy to allow Catie to remain on oxygen. She is resting comfortably now. Thank you again! ❤️

Here is our official statement:

Yesterday, Life Legal reported that 64-year-old Catie Cassidy was threatened with removal of oxygen while receiving care at a Minnesota hospital. Without supplemental oxygen, Catie would have suffocated to death.

In response, Life Legal attorneys sent a demand letter letting the hospital know of its duties under Minnesota law.

We received news today that Fairview Hospital in Edina is fully cooperating with Catie’s health care proxy and that they will continue to provide Catie with oxygen as needed.

We are grateful for the work of our Life Legal Minnesota team, especially attorneys Wayne Holstad and Craig Beuning of Holstad and Knaak, who intervened immediately on Catie’s behalf.

“Life Legal is pleased that Catie will receive the care she needs and that her wish to fight for her life as long as she can will be honored,” said Life Legal Executive Director Alexandra Snyder. “It is time for us to have a larger conversation about the inherent value of every human life and about our moral obligation to protect those who are most vulnerable.”