Diane Coleman Interviewed Re Disability Opposition To NY Assisted Suicide Bill

A recent news story on the New York assisted suicide bill included a one-minute interview with NDY’s founder and President/CEO, though the full story began and ended with a much longer video provided by the national organization that supports these bills.

Headshot photo of Diane Coleman, a white woman with a breathing mask
Diane Coleman with breathing mask

Here are the NDY quotes:

“These policies are especially a danger to people with disabilities of all ages,” explained Diane Coleman of the disability advocacy group, Not Dead Yet.

Coleman said she’s studied other states where medical aid in dying is already in place.

“I think a lot of people assume it’s pain (why people choose to die) but that isn’t the case, the top five reasons are disability-related things like not being able to do the same things you used to do, feeling like a burden on others, feeling like you’ve lost your dignity,” she tells News10NBC.

All issues, Coleman says can be eased with access to proper home care.

“We also know that doctors aren’t that great at predicting the 6 months, I mean I’ve certainly experienced that and many disabled people have been told, well you’re on your last legs here,” she said.

Coleman also has concerns about the safety of the medication being in a home after it is prescribed and filled.

For the whole local news story and video, go HERE.

[Note: The title of the story – “Should terminally ill patients have the right to end their lives?” – is misleading because no one needs permission to end their own life. The purpose of assisted suicide laws is to grant broad legal immunities to 3rd parties who assist the suicide.]

Video: NDY’s John Kelly Debates C&C’s Dan Diaz on Greater Boston

From WGBH, Boston’s PBS station: “Proponents of medical aid in dying, also known as physician-assisted suicide, say it can offer a peaceful death to those who are terminally ill. Critics say the process is unfairly stacked against people with disabilities. The two sides debated with Liz Neisloss on Greater Boston.”

An article samples quotes from the 15 minute TV broadcast (video below):

John Kelly, director of Second Thoughts Massachusetts, is opposed to the bill. An accident left Kelly paralyzed from the neck down at the age of 25. He said many people who have chosen physician-assisted suicide did so not because of pain, but because of a loss of abilities and feeling like a burden on others. He said those are the same issues disabled people face.

“My own father wished that I had died in the accident,” he said. “And people have told me they would rather be dead than be like me.”

He added that there’s a lack of proper home care, which can be expensive when available.

“People are faced with the choice of going to a nursing home or living at home with resentful helpers, not getting their needs met,” he said.

 

 

Disability Activists Crash Pro-Assisted Suicide Press Conference

Last Wednesday, five disability rights advocates surprised assisted suicide proponents with some direct action in Albany, NY. They were Alex Thompson from the NY Assn. On Independent Living, Zach Garafalo from Center for Disability Rights (CDR), and Julie Farrar, Cliff Perez and Aaron Baier from the Independent Living Center of the Hudson Valley.

The disability activists had received short notice of a pro-assisted suicide “rally” and press conference being held in the Capital and Legislative Office Building, so they made signs, grabbed NDY t-shirts and headed over. CDR also issued a press release (see below).

If there was a rally at the planned location, the activists must have missed it, but they muscled their way into the press conference room of about 20 people. When proponents spoke, claiming that the majority of disabled people support assisted suicide, one intrepid protester yelled “Bullsh*t!”.

In the flurry of activity, we only got one photo, featuring Aaron Baier with his sign (photo credit to Julie Farrar).

White man with strawberry blond hair wearing a Not Dead Yet t-shirt with black pants, holding a white cane, with a sign saying "Disabled Lives Are Worth Living", near a tripod sign saying "Compassion and Choices event is in Room 711A at 11:00 am".
Aaron Baier with NDY T-shirt and Protest Sign

CDR also issued the press release below, which resulted in an interview, but we’ve seen no article or coverage. Thanks to all involved in this direct action to make our voices heard!

FOR IMMEDIATE RELEASE: April 27, 2022

CONTACT: Zach Garafalo, Manager of Government Affairs, Center for Disability Rights, Albany, New York 12203 518-362-7916 or zgarafalo@cdrnys.org

CENTER FOR DISABILITY RIGHTS WARNS LEGISLATORS THAT PHYSICIAN ASSISTED SUICIDE IS A DEADLY PROPOSITION THAT PUTS DISABLED PEOPLE AT RISK

Albany: Although it is portrayed as a progressive rights bill, Disability Rights advocates urge state legislators to recognize that the Medical Aid in Dying Act (A4321/S6471) is an existential threat to Disabled New Yorkers. If passed and signed into law, the government will have abdicated its responsibility to ensure Disabled New Yorkers have equal protection under the law related to suicide prevention services. “Instead of being referred for suicide prevention services, Disabled people will be given the tools to end their lives,” said Rebecca Payton, CDR’s Senior Director of Independent Living Services.

This legislation endangers Disabled people who are at grave risk of coercion and abuse while creating an opportunity for insurance companies to enhance their bottom line. “Legislators can’t ignore that insurance companies and family members may financially benefit from the untimely deaths of Disabled New Yorkers,” said Bruce Darling, President/CEO of the Center for Disability Rights.  “It’s awful, but abuse of elderly and Disabled individuals is a fact of our lives. This bill opens throws open the doors for the worst of that.”

Additionally, advocates warn that medical determinations about how long a person has to live are just guesswork. “My mother was diagnosed with small cell lung cancer which appeared unresponsive to treatment. She was given palliative treatments intended to alleviate her symptoms, but lived well beyond anyone’s expectations. In fact, she took us out to dinner to celebrate the five-year mark when she ‘beat’ her cancer”, said Darling. “I treasure those unexpected years which could have been lost if policies in our state were different.”

Disability rights advocates are particularly concerned about the impact on marginalized communities, particularly Black, Indigenous People of Color. “BIPOC Disabled people are at greater risk from assisted suicide laws because of racial disparities in health care,” said Ayishetu Salifu Mamudu, Deaf Systems Advocate at the Regional Center for Independent Living. “Although privileged white people present this as a rights issue, the reality is that BIPOC are in the cross hairs of this bad policy. I urge policy makers to recognize that and understand that in establishing this rights for some people, BIPOC individuals – and others – will die before their time. That is unacceptable.”

Although the bill is presented as helping people die peacefully, that argument is disingenuous because solutions already exist. “There is an alternative,” said Zach Garafalo, Manager of Government Affairs at the Center for Disability Rights. “Anyone dying in discomfort that is not otherwise relievable, already may legally receive palliative sedation, wherein the patient is sedated to the point that the discomfort is relieved while the dying process takes place. We already have a legal solution to any uncomfortable deaths that does not endanger others the way an assisted suicide law does.”

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NDY, DREDF and United Spinal Discuss Shavelson Euthanasia Case at Press Briefing

Disability advocacy organizations NDY, DREDF and United Spinal partnered with the Patients Rights Action Fund (PRAF) to hold a press briefing on the Shavelson v. CA Department of Health Care Services case heard on April 14 in the federal District Court of Northern California. Video of the press briefing is available on PRAF’s Facebook page HERE. PRAF’s Press Advisory regarding the briefing is below.

San Francisco, CA – Thursday, April 14th, 2 PM PDT, the Patients’ Rights Action Fund partnered with local attorneys and disability rights activists to host a virtual news conference discussing the Shavelson v. CA Department of Health Care Services case (Shavelson). Shavelson challenges the requirement in California’s “End of Life Options Act” that patients who choose assisted suicide self-administer the lethal drugs.

The U.S. District Court for the Northern District of California (The Court) held a hearing on Thursday, April 14th at 10 am PDT on a motion to dismiss. The virtual press conference features legal and professional opinions, as well as personal testimonies from those whose lives have been or would be endangered by assisted suicide legislation.

WHO:

  • Diane Coleman: President, CEO, Not Dead Yet, a national disability rights group which she founded in 1996 to give voice to disability rights opposition to legalization of assisted suicide and euthanasia.

  • Jim Weisman: President, CEP, United Spinal Association is a dedicated advocate for over 38 years who helped expand disability rights and ensure access to transportation for wheelchair users in New York City and across the country.

  • Anita Cameron: Director of Minority Outreach, Not Dead Yet, disability rights activist for nearly 40 years. Member ADAPT.

  • Matt Vallière: Executive Director of Patients’ Rights Action Fund hosts.

WHAT:

News conference discussing Shavelson “End of Life Options Act.”

By ending the self-administration requirement in the Act, the Courts would establish, for the first time in the U.S., legal euthanasia, a practice that even most groups who support assisted suicide oppose.

If euthanasia as a practice is established, persons with disabilities will be subject to even more pressure and discrimination to end their lives.

Anorexia Nervosa, Psychiatric Disability and the New American Vanguard of the Movement to Legalize Assisted Suicide

Guest Blog by Kathleen Nicole O’Neal

Image Description: Headshot of white woman with light brown shoulder length hair, long earrings, a nose ring, and necklace against a light blue collar.
Kathleen Nicole O’Neal

   In February of 2022, Dr. Jennifer L. Gaudiani, Dr. Joel Yager, and the late medical patient Alyssa Bogetz published a truly disturbing article in the Journal of Eating Disorders entitled “Terminal Anorexia Nervosa: Three Cases and Proposed Clinical Characteristics.” In this article, Dr. Gaudiani, a Colorado based physician with her own eating disorders clinic who served as the primary author, delineates her involvement with providing “medical aid in dying” (MAID, aka assisted suicide) to three individuals in their thirties with the eating disorder of anorexia nervosa. Dr. Gaudiani and her coauthors advocate for the acceptability of providing lethal drugs to some patients with a condition that the paper refers to as “severe and enduring anorexia nervosa” (SEAN), but a close and critical reading of this paper makes it clear just how problematic such an approach actually is.

   In the case studies of Aaron, Jessica, and Alyssa which form the heart of the paper, we are introduced to three deeply psychologically troubled young adults who were all described as being talented, intelligent, compassionate, and high achieving. What is truly heartbreaking about reading this paper is that the reader gets a glimpse not only of how hellish these individuals’ struggles with anorexia nervosa were, but simultaneously also how much of value all of these people had to live for and how deeply ambivalent and conflicted these individuals were about taking steps to end their lives. The haunting question remains – if these individuals had received more effective suicide prevention which reinforced the spark to live within them instead of encountering a doctor who in some ways appeared to condone and even encourage their more nihilistic impulses, might these individuals be alive today and living meaningful lives?

   One pervasive myth about the motives of those with illnesses and disabilities who die by assisted suicide is that a major motivating factor driving them involves a reasonable desire to escape unretractable and unremitting pain. However, the empirical evidence that researchers have gathered indicates that this is just not true for most sick and disabled people seeking assisted suicide. Dr. Thomas Joiner is a renowned professor of psychology at Florida State University who has written a number of books on the issue of suicide in general – what causes suicide and how to prevent it. Although his work touches on assisted suicide, it is the entire phenomenon of suicide in all cases that is his focus. What is important about his work for our purposes is to appreciate that the factors which drive suicide in general are the same factors which drive people to seek out assisted suicide.

   According to Dr. Joiner, for an individual to deliberately seek to end their life, three factors must be in place. If any of these factors are absent, then an individual will not seek suicide. The factor is something which Dr. Joiner terms “learned fearlessness,” or the psychological and physical “courage” to do an act that we are evolutionarily hard-wired to avoid. It is easy to see how this criteria applies to those who have struggled with anorexia over many years, individuals who are accustomed to inflicting severe forms of self-harm on their bodies and minds. Poignantly, Dr. Joiner’s other two criteria are “perceived burdensomeness” and “failed belongingness.” When we think about these two criteria in particular in the context of older, ill and disabled people being encouraged to end their lives, it becomes immediately apparent how problematic the push to promote assisted suicide is for those whom society already oppresses, discriminates against, and devalues.

   The first case presentation discussed in the article is that of Aaron, deceased at age thirty-three after years of battling anorexia nervosa, obsessive compulsive disorder, major depression, and chronic suicidality. Aaron first developed serious neuroses surrounding his intake of food in the ninth grade. Despite graduating first in his high school class, Aaron’s mental health problems kept him from enrolling in college immediately after high school and would ultimately keep him from graduating from college at all even after a later period of enrollment. As Aaron’s disease progressed, his relationships with family grew strained and he felt increasingly guilty about the amount of money that his family was spending on his treatment. Despite Aaron expressing ambivalent feelings and fear about death, Dr. Gaudiani consulted by telemedicine and advocated with Aaron’s team for him to receive palliative care. He also signed a Do Not Resuscitate (DNR) order. It was not long before Aaron would die.

   Jessica was a thirty-six-year-old woman whose issues with anorexia nervosa also began in earnest during her high school years. While in college, Jessica left school to enter “intensive outpatient eating disorder treatment.” This experience proved incredibly traumatic for Jessica and as a result, she distrusted eating disorders treatment providers going forward. As Jessica’s disease progressed, her relationships with family became strained and, despite having an “excellent job”, Jessica opted to work from home, further isolating herself from others. According to Dr. Gaudiani, “…fearful of suffering a long, drawn-out death from starvation and unwilling to put her parents through the agony of witnessing this decline, Jessica requested referral to a palliative care specialist who assessed patients for medical aid in dying (MAID).” Jessica signed a DNR order and Jessica’s physicians prescribed her the MAID medications. Many times, Jessica decided at the last minute not to take the lethal medications after having planned to do so and she often told her family that she did not want to die. However, Jessica did eventually choose to take the lethal medication and end her life.

   Alyssa Bogetz would serve as a posthumous coauthor of Dr. Gaudiani’s paper. According to the paper, “She first felt suicidal at age thirteen, when she realized that her body was too large to fit into standard dress sizes for her upcoming Bat Mitzvah.” When Alyssa eventually lost weight, the external validation she received from others fueled her eating disorder in earnest. After getting into contact with Dr. Gaudiani, Alyssa expressed her goals: “I really want a life, to use my Masters in Social Work degree to help others heal, to find a partner, and to experience pleasure, laughter, joy, and freedom, including from my own brain,” which she reaffirmed nine months later. However, Alyssa’s “chronic, longstanding shame and body disgust” prevented her from living the life she wanted to live. Doctor Gaudiani described Alyssa’s options, including continued treatment, palliative care or hospice, including the availability of “MAID”, described in a positive light. This is despite the fact that potential medical options to address Alyssa’s disease remained untried. Ultimately, Alyssa never actually took the MAID medications but had them on hand when she died from inadequately treated anorexia nervosa while in hospice care.

   In the stories of Aaron, Jessica, and Alyssa, we encounter demoralization, ableism, and sizeism. We confront the specter of vulnerable, deeply distressed individuals who nonetheless had so much to live for and were fundamentally ambivalent about ending their lives. We encounter a physician who could have unequivocally encouraged their desire to keep living and fighting but who instead chose to feed into their impulses towards self-destruction. We see a member of a healing profession abusing her position of authority and trust to steer troubled people towards ending their lives. We see the inherent dangers in the push for assisted suicide thrown into stark relief. Aaron, Jessica, and Alyssa deserved better. We all deserve better.