Disability Rights Groups Applaud NY Court of Appeals Assisted Suicide Ruling

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Not Dead Yet, the Resistance

Contacts:

Diane Coleman 708-420-0539 dcoleman@notdeadyet.org
Adam Prizio 518-320-7100 (office) 603-518-4910 (cell) aprizio@cdrnys.org 

For Immediate Release:
Disability rights groups applaud today’s New York Court of Appeals unanimous ruling announcing that “we reject plaintiffs’ argument that an individual has a fundamental constitutional right to aid-in-dying . . . . We also reject plaintiffs’ assertion that the State’s prohibition on assisted suicide is not rationally related to legitimate state interests.”

Not Dead Yet led the filing of a Disability Rights friend-of-the-court brief in the state’s highest court in support of the New York State Attorney General. Joining in the Not Dead Yet brief were ten other national and New York state disability rights organizations: ADAPT, the Autistic Self Advocacy Network, the Center for Disability Rights, the Disability Rights Center, the Disability Rights Education & Defense Fund (DREDF), the National Council on Independent Living, the New York Association on Independent Living, Regional Center for Independent Living and United Spinal Association, collectively referred to as the “Disability Rights Amici.”

“We are tremendously heartened by today’s decision,” said Adam Prizio, attorney for the Disability Rights Amici. “This was the right decision for the Court of Appeals and for the disability community, because the Petitioners were asking the Court to write into law an exception which the Legislature did not create and did not intend. The Court rightly declined to do this. I expect proponents of assisted suicide to redouble their efforts with the Legislature as a result, and to try to push assisted suicide through in a hurry next year. We will be there to push back when they do, because this issue is life and death for the disability community.”

Among other issues, the brief expressed concerns about advocacy for assisted suicide in the context of extreme pressures to cut health care costs. “Elders and people with disabilities too often face economic or other pressures to get out of the way,” said Diane Coleman, president/CEO of Not Dead Yet. “If assisted suicide becomes an accepted practice, coverage may be denied for more expensive healthcare, as we’ve already seen in Oregon and California. In this climate, what is being promoted as a ‘right to die’ could very quickly become an expectation, even a duty to die.”

In a concurring opinion, Justice Fahey quoted from the Disability Rights brief:

The Disability Rights amici argue that while the plaintiffs “use the term ‘dignified death’ to justify assisted suicide. . . .  the ‘indignities’ nondisabled (and some newly disabled) people invariably describe are the need for assistance in daily activities like bathing, dressing, and other realities of having a disability.  Legalizing assisted suicide enshrines in law the prejudice that death is preferable to receiving the assistance that many disabled people rely on” (Amicus Brief of Disability Rights Amici: Not Dead Yet et al., at 4).  . . .  Legalizing physician-assisted suicide would convey a societal value judgment that such “indignities” as physical vulnerability and dependence mean that life no longer has any intrinsic value.

A disability does not deprive life of integrity or value.  There is no lack of nobility or true dignity in being dependent on others.

Statement of Solidarity in Observance of Suicide Prevention Month

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Affirming the Importance to People with Disabilities of Access to Services, Real Choices, and Self-Determination
September is suicide prevention month, and during its observance, we express our sincere sorrow that any human ever experiences a level of despair or hopelessness that results in a choice to end one’s own life.
The concern of the disability, military and veterans, and aging communities in suicide prevention is understandable in view of research regarding rates and reasons, which consistently show these groups at increased risk. According to several studies, the biggest difference between notes of those who died as a result of suicide attempts and those who attempted it but survived was a far greater emphasis in the notes of those who died as a result of their attempts on the belief that they were a burden on other people and society at large.[1] Research also shows that isolation or removal of a person from his or her social group creates increased risk for suicide, and that people experiencing depression – a psychiatric disability – have a risk factor 25 times greater than that of the general population.[2]
As a community of more than 58 million Americans with disabilities of all races, ethnicities, ages, sexual orientations, and genders/gender identities  — including veterans with disabilities and the aging community with acquired disabilities – we have a long history of receiving messages from society that we are a burden on account of our health care needs; our difficulty transitioning back into society; or faulty assumptions about the quality of our lives. Far from harmless opinion, these views – often tantamount to “better dead than disabled” – are an insidious threat to our civil rights and to decisions about allocations of public funds.
As long as the majority of Americans with disabilities continue to live in poverty and unnecessary isolation, without access to appropriate mental health care and comprehensive, fully-funded and operational systems of assistive living services, our alarming and distressing rates of suicide, including assisted suicide, will go unchecked. We find this unacceptable, and in recognition of the 27th anniversary of the Americans with Disabilities Act (ADA), we echo the words of the National Council on Disability, an independent federal agency, when it wrote, “Society should not be ready to give up on the lives of its citizens with disabilities until it has made real and persistent efforts to give these citizens a fair and equal chance to achieve a meaningful life.”[3]
Underpinning and enshrined within major American disability civil rights laws is the belief that “disability is a natural part of the human experience.”[4] The immutability of disability forms the basis of the protections these laws confer, and yet, laws alone, absent abiding commitments from all quarters of society, cannot create the type of societal change that together we are fighting to achieve.
We on this occasion of observing Suicide Prevention Month:
  • Recognize that people with disabilities, including veterans with disabilities and the aging population, are among society’s most likely to end their lives and to experience pressure to end their lives.
  • Recognize that other factors such as race, ethnic origin, sexual orientation, gender, and gender identity/expression may further compound on and contribute to risk factors relating to suicide.
  • Affirm the statement in Article 10 of the U.N. Convention on the Rights of Persons with Disabilities, which states that “every human being has the inherent right to life” and pledge to work together to “ensure its effective enjoyment by persons with disabilities on an equal basis with others.”
  • Believe disability is a natural part of the human experience and a form of human diversity, and we reject the notion that disability is a fate worse than death.
  • Believe dignity is innate in every life and eschew the notion that dignity can only be achieved or reclaimed by extinguishing life.
We encourage leaders from across the country to join us in calling out and rejecting policies and practices that exclude, isolate, and discriminate against people with disabilities that so often encourage self-inflicted or assisted premature deaths; and instead, work together toward the full participation and self-determination of all people with disabilities as equally-valued members of our beautiful and diverse human family.

Not Dead Yet

ADAPT of Texas
American Association of People with Disabilities
Associated Students Inc.
Association of Disabled Women ONE.pl
Association of Programs for Rural Independent Living
Autistic Self Advocacy Network
BNICEH
#CripTheVote
Disability Rights Education & Defense Fund (DREDF)
Disability Rights International
Ehlers-Danlos Network Australasia
FilmDis
Green Think Tank for the Disability Community
IMPRUVE
#LiveOnProject
National Council on Independent Living
National Organization of Nurses with Disabilities
New York Association on Independent Living
NMD United Inc.
Not Dead Yet Montana
Ohio ADAPT
Parent to Parent USA
Partnership for Inclusive Disaster Strategies
Portlight Inclusive Disaster Strategies
Potter County Yellow Ribbon
Road to Freedom Bus Tour
Sibling Leadership Network
United Spinal Association
Zach Baldwin
Gregg Beratan
Janine Bertram
Fallon Binns
Jennifer Border
AaronBrannen
Kathy Brill
Allison Butler
Carolyn Clark
Diane Coleman
Kelvin Chung
Roger Deason
Kathleen Downes
Sarah Dresser
Robin Eames
Eddie Ellis
Horacio Esparza
Dominick Evans
Heather Gautier
Carol Gilster
Tom Gratis-Roh
Irina Greenman
Jason Harris
Tania Harris
Cy Harvey
Linda Hughes
Brittany Hepler
Marsha Katz
Angela Kennedy
Christiana Koch
Rayna Lamb
Jean-Marie Lawrence
Quin Lawrence
Selina Lee
John Leete
Cara Liebowitz
Andrew Little
Ama Love
Ayo Maat
Larissa MacFarlane
Karen McCulloh
Shonda McLaughlin
Barb Mead
Sheila Northrop
Lydia Nunez Landry
Kayla Olden
Tom Olin
Jennifer Pickner
Rebecca Raphael
Joanna Rennix
Marcie Roth
Kendra Scalia
Mik Scarlet
Dawn Schelthelm
Tracey Steele-John
Paul Timmons
Claire Vinten
Mike Volkman
Kristin Walters
Liz Weaver
Andrea Winters
Emily Wolinsky

[1] Joiner, T. E., Pettit, J. W., Walker, R. L., Voelz, Z. R., Cruz, J., Rudd, M. D., & Lester, D. (2002). Perceived burdensomeness and suicidality: Two studies on the suicide notes of those attempting and those completing suicide. Journal of Social and Clinical Psychology, 21(5), 531-545.

[2] W. Breitbart, “Cancer Pain and Suicide,” in Advances in Pain Research and Therapy, ed. K. M. Foley et al., vol (New York: Raven Press, 1990), 399-412.

[3] National Council on Disability, “Assisted Suicide: A Disability Perspective Position Paper” (1997).

[4] As expressed in the congressional findings of the U.S. Developmental Disabilities Assistance and Bill of Rights Act, 42 U.S.C.A. §15001 (2000), the Individuals with Disabilities Education Act, 20 U.S.C.A. §1400, and the Rehabilitation Act, 29 U.S.C.A. §701.

Canadian Proposals for Assisted Suicide Eligibility for Mental Health Conditions

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Below is the text of Toujours Vivant/Not Dead Yet Canada‘s webcast today on a Canadian proposal to expand eligibility for assisted suicide and euthanasia (AS/E) to include people with labels of “mental illness.”

COUNCIL OF CANADIAN ACADEMIES “MAID” EXPANSION STUDY: MENTAL ILLNESS

  • This is the second part of our series on the three areas of assisted suicide expansion being studied by the Council of Canadian Academies. Today, we’re discussing mental illness as the main reason for assisted suicide eligibility.
  • The first and most obvious problem with allowing assisted suicide and euthanasia for people with psychiatric disabilities is that their wish to die is usually a symptom of the disability – as is the case with depression. The only way to know if the person is receiving the treatment that is best suited to their needs and most effective – and the person responds to treatment – will be a lessening of their wish to die.
  • The link between mental illness and the wish to die also calls into question a person’s ability to make a free and informed decision to end their life.  In a Dutch study of assisted suicides, in 24% of cases, there was disagreement among the doctors who approved the euthanasia about whether the person was competent, and whether all possible treatment options had been tried.
  • While 74% of people who asked for AS/E in one study had depression, many had other conditions that complicated matters, including substance abuse, intellectual disability or being on the autism spectrum.  About half the people had personality disorders, which increases the chances that their desire for assisted suicide would not be consistent and settled.
  • In addition, the ratio of women to men asking for assisted suicide was over 2:1.  This lines up with statistics showing that women are much more likely to attempt suicide (as a “cry for help”) than men, but men are three times more likely to complete suicide.  Thus, many “cries for help” from women will result in death in places where assisted suicide and euthanasia are legalized for psychiatric conditions.
  • More than a quarter of the people in the Dutch study asked for death from a doctor they didn’t already know – most at a specialized euthanasia clinic.  It’s hard to imagine that a family doctor or a clinic specializing in euthanasia would be able to correctly decide whether a person’s psychiatric disability interfered with their judgment, whether they were getting the best possible treatment, and if they had exhausted all treatment options.
  • Another concern is whether legalizing assisted suicide for psychiatric disabilities would lead mental health professionals to believe it is acceptable to give up on treating people with mental disorders.  Would that, in turn, cause people with psychiatric disabilities to lose hope about getting treatment or feeling better?
  • Allowing assisted suicide solely for mental health reasons is a form of legalized discrimination against people with psychiatric disabilities.  This discrimination already exists in our society’s very different approaches to physical and mental health care. Physical illnesses are considered uncontrollable, whereas mental illness is thought to be a moral failing.  Physical health is therefore seen as a priority, while mental health services have less funding and are unavailable to many who need them.  Only 1 in 5 young people who need mental health treatment get it; 2/3 of adults who need help don’t seek it out, either because it’s not available or because of the stigma associated with mental illness.
  • Mental health treatment has also changed drastically over the past few decades. Instead of interactive therapies, doctors are prescribing drugs. Talk therapy is often not covered.  If someone’s needs do not respond to pills, “the system” may claim it is unable to help them.
  • Reports from the Netherlands and Belgium have shown that many people who are euthanized because of psychiatric disabilities were physically and sexually abused. One example is the case of “Ann G.”, who sought treatment for anorexia.  However rather than being helped, Ann G. was sexually abused by her therapist.  After publicly accusing the therapist – who admitted what he had done, but was not punished – she was approved for euthanasia by another mental health professional.  Thus death became a second form of victimization.
  • In fact, people with psychiatric disabilities – who are often stigmatized as being dangerous – have the highest rates of abuse, poverty, homelessness, and lack of adequate health care.
  • Statistics also show many people asking for euthanasia are socially isolated and lonely.  Rather than providing psychosocial supports to these people, the mental health system “gives up on” them by euthanizing them.
  • Research shows that mental health professionals often harbour negative feelings toward suicidal patients. “Countertransference” describes a therapist’s reaction to their patient based on his or her own psychological issues or background.  If a therapist is having a negative reaction to a suicidal client, this can contribute to a “negative outcome”; in other words, the client’s death.

Portlight Strategies – Disaster and Disability

Our News & Commentary Blog, Paul Timmons, Portlight Strategies

In the early ’90s, I lived in rural Tennessee during an ice storm and two week power outage. I was lucky to have friends who rescued me and let me stay in their home outside the damage zone. Weather disasters can be deadly to anyone, but they’re especially life-threatening to seniors and people with disabilities.

I want to highlight two resources addressing the issues of disaster and disability. First: Partnership for Inclusive Disaster Strategies Hurricane Harvey Disability Hotline (800) 626-4959 has received hundreds of urgent requests for assistance for people with disabilities and older adults. Portlight Strategies and the Partnership for Inclusive Disaster Strategies Hurricane Harvey Disability Hotline have been able to offer emergency assistance to hundreds of people with disabilities since late last week.

According to Portlight, “We have been working closely with the Houston Mayor’s Office for People with Disabilities, disability organizations, TX state government, the FEMA Regional Disability Integration Specialist and Partnership member organizations from across the country. Portlight has also joined forces with the Cajun Navy to optimize our shared commitment to rescuing people and with Trach Mommas to begin the process of getting disability supplies to people who need them to maintain their health and independence. We are also partnering with Anthem, and appreciate their generous assistance for our hotline and disaster relief efforts.”

An interview by David Perry with Paul Timmons, co-founder of Portlight, appeared this week in Pacific Standard, Inside the Organization Saving Disabled People During Hurricane Harvey. A key point Timmons makes is, “Where this [inclusive disaster response] works is where there are pre-existing relationships between people in the emergency management community and people in the disability stakeholder community. Where it doesn’t work is where those relationships don’t exist. It’s too late to build those relationships once the disaster has come.”

NDY’s Director of Minority Outreach, Anita Cameron, has also been heavily involved in disaster relief planning for people with disabilities over the years. In 2004, while in Washington, DC, Anita trained to become a CERT (Community Emergency Response Team) member. In 2008, she helped to form the first CERT class consisting of people with disabilities in Rochester, New York. After joining Denver CERT in 2011, Anita became the first visually impaired CERT instructor for the State of Colorado in 2012, and in 2013, became a CERT Program Manager for the State. She has assisted in numerous exercises and real-world incidents with Denver CERT, including serving as a radio communications operator during the Colorado Flood of 2013.

Anita wrote a very helpful article on personal disaster preparation that contains excellent and practical advice that is useful for people with or without disabilities, Emergency Preparedness – A Common Sense Measure for the Disability Community. Wherever you live, please prepare – it may save your life.

And please consider supporting Portlight Strategies by going here.

 

NDY Canada Explains the Dangers to Disabled Children of “MAID” Expansion to Minors

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This text is from today’s webcast by Amy Hasbrouck, Director of Toujour Vivant/Not Dead Yet Canada.

COUNCIL OF CANADIAN ACADEMIES “MAID” EXPANSION: MATURE MINORS

  • The preamble to Bill C-14 – Canada’s assisted suicide legislation – specifies three possible expansions of assisted suicide to mature minors, people with psychiatric disabilities, and those requesting assisted suicide in an advanced directive. Health Canada has asked the Council of Canadian Academies to study each of these areas. Today and over the next two weeks, we will look at each of these topics. Today’s webcast will focus on assisted suicide for “mature minors.”
  • Ill and disabled children often grow up in families where non-disabled parents see their lives as burdensome, tragic, a disappointment of their hopes for the future, and “not worth living.” The child’s disability, rather than the discrimination the family faces, is thought to be the source of the family’s problems. When these beliefs and feelings are accepted by the child, the result is low self-esteem.
  • Ill and disabled children, who may be the only disabled person in the family, lack positive role models at home and in popular culture, and are usually isolated from other disabled people with a positive view of themselves.
  • This experience, of being isolated from peers and the subject of parents’ negative feelings, is very similar to that of lesbian, gay, bisexual and transgender children growing up in a homophobic society.  And as with LGBT kids, disabled teens are at higher risk for suicide.
  • Parents who kill their disabled children are given more lenient treatment than those who kill non-disabled children, reflecting society’s devaluation of the lives of disabled children. Of 35 cases of parents who were sentenced for killing their disabled children, 15 received no jail time.  Eight more received up to five years in jail, and nine more spent less than 20 years in prison.  This compares to an average sentence of 30 years for child murder where the child is not disabled. (See Amy’s excellent article on this subject, Misplaced Mercy: Prosecution and Sentencing of Parent’s Who Kill their Disabled Children.)
  • Parents ordering surgery for their disabled children to make them easier to care for is another way disabled children are devalued.  For example the Ashley Treatment (named for the first person known to have had it) involves removing a child’s sex organs and stunting their growth with hormones so that they can never become adults.
  • Disabled children face a much higher risk of abuse than non-disabled children. They are often conditioned to be compliant in many painful and invasive situations – for example, medical treatment and personal care.  This makes them ideal victims of abuse, while denying the pain they feel and the lack of privacy they experience.
  • On top of that, ill and disabled children face the same teenage troubles as non-disabled kids, and some studies have found they are even more likely to attempt suicide.
  • Why should non-disabled adolescents benefit from suicide prevention, while ill and disabled youth are encouraged and enabled to kill themselves?
  • A case in point was that of Jerika Bolen who died in September of 2016.  Jerika, who had a neuromuscular disability, received widespread support and thousands of dollars in donations for a “Last Dance” when she publicly announced that she wanted to go to hospice to die.   Activists with similar disabilities expressed concern about whether Jerika was receiving good health care and pain management.  Disability rights activists also questioned the outpouring of public support for her death, while society pledges to prevent the suicide of non-disabled teens.
  • In fact, just this morning we learned of a 19-year-old in England, Tommy Swales, who had Friedreich’s Ataxia, who killed himself because of depression.  He had talked about his desire to commit suicide to his mother and on social media.
  • Many laws, such as those forbidding underage use of tobacco and alcohol, limit teenagers’ freedom in order to prevent self-inflicted harm. Preventing people under 18 years of age from having assisted suicide would be consistent with current public policy.