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.”

What Can We Do When A Hospital Plans To Involuntarily Withdraw Life Support?

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Friday night, I got a phone call from a woman who said that a Minnesota hospital had stated its plan for Monday at 1:00 pm to discontinue providing oxygen to her friend, Catie, a woman with lung cancer who stated that she wants to live and keep getting oxygen.

NDY sometimes gets calls like this from people describing similar situations, most of whom are shocked by their experiences. Sometimes I can ask questions that help clarify a few issues, but the main thing we try to do is help identify potential advocates, lawyers and resources located where they are, advocates who will hopefully get directly involved. The woman who called also recorded a video of Catie expressing her wishes.

Of the resources that we and the caller were able to reach, Life Legal Defense Fund was first to step in. They issued a press release which includes the video link and states:

Hospital to euthanize woman who says “I want to LIVE”

Catie is a patient at a hospital in Minnesota. She has lung cancer and needs oxygen to remain comfortable. The hospital plans to remove Catie’s oxygen tomorrow morning, which will result in her death by suffocation.

Catie is on video saying she does not want the hospital to “pull the plug.” She relayed this to the hospital’s chaplain, who was sent to Catie’s room by the hospital to prepare her to be euthanized. Even though the hospital has been sedating Catie, she understands what the hospital is planning to do and says she is still fighting and is “not ready” to die.

We are appalled that a hospital would even consider withdrawing oxygen from a patient who has clearly communicated that she wants to live. When asked if she wants her oxygen removed, Catie’s response was “NO! I want to live!”

Withdrawing Catie’s oxygen to cause her death is active euthanasia, which is illegal in Minnesota and every other state.

Life Legal is evaluating legal options at this time.

Link to video: https://youtu.be/42rVk-wz1Hg

As of Tuesday, April 30, Catie is still alive.

 

NDY Demands Prohibition On Use of QALYs To Limit Health Coverage

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Not Dead Yet is deeply concerned by the New York Legislature’s failure to protect people with disabilities from discrimination in the budget passed this week.  Despite widespread criticism from the disability community, the Legislature incorporated language in the budget authorizing the state to use third party assessments, including those relying on the discriminatory and harmful Quality Adjusted Life Year (QALY), to limit access to prescription drugs for individuals on Medicaid.

Not Dead Yet has long opposed the use of the Quality Adjusted Life Year, which calculates the value of disabled life as a percentage of the value of the life of a non-disabled person. QALYs were firmly rejected in 1992 when the State of Oregon was denied permission to use QALY assessments in their Medicaid program due to the newly passed Americans with Disabilities Act. The Affordable Care Act prohibited the use of QALYs in the Medicare program and in the Patient-Centered Outcomes Research Institute (PCORI). Unfortunately, the state seeks to circumvent these restrictions by relying on third-party QALY assessments conducted by the Institute for Clinical and Economic Review (ICER), an organization that conducts QALY assessments on each new drug brought to market.

New York’s Medicaid Drug Cap empowers the state to restrict access to medications that exceed the cost assessed as reasonable by the state’s Drug Utilization Review Board. This poses a serious concern for people with disabilities, who often depend on such medication in order to survive and thrive. Already, the Drug Utilization Review Board has used QALY assessments in their assessment of Orkambi, a crucial medication for people with cystic fibrosis.

While we support measures to reduce the price of prescription drugs, we do not believe that people with disabilities and chronic conditions should be held hostage in negotiations between pharmaceutical companies and insurers, be they public or private. In addition, we firmly reject any role for the QALY in assessing the value of the medications that many in our community rely on as a matter of life or death.

Not Dead Yet urges state policymakers in New York and across the country to reconsider this ill-advised approach to value assessment and to prohibit the use of Quality Adjusted Life Years in state decisions around coverage, access, incentives and reimbursement. This prohibition should be broad based, applying both to direct state decisions and the use of third-party assessments that rely on QALYs.

People with disabilities deserve better than discriminatory and harmful restrictions rooted in an outdated and offensive idea that our lives are worth less than those of the general population. Not Dead Yet urges policymakers and advocates to act to address this grave risk to our community.

Mike Reynolds’ Op-Ed Published On the Eve of Maine Assisted Suicide Hearing

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In the Bangor Daily News:

I can’t believe I’m still fighting against assisted suicide

By Mike Reynolds, Special to the BDN • 

In what seems like a lifetime ago, I began my activism against assisted suicide in a small dorm on the University of Maine campus in Orono, never imagining that I’d still be arguing the same points about such a flawed law that was enacted in Oregon in 1997. That year I went to Washington, D.C., to protest outside the Supreme Court (on a day that was bitter cold by even Maine standards) as they heard the Vacco v. Quill case, which challenged the constitutionality of New York state’s ban on assisted suicide.

A year later I testified in front of the Maine Legislature for the first time against assisted suicide. By then, it had been defeated a handful of times. It failed that year as well, and voters soundly defeated a referendum on the same legislation in 2000.