Statement of Solidarity in Observance of Suicide Prevention Month

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September is suicide prevention month, and grim though it may be, the disability, aging, and veterans communities are among the most likely populations to feel pressure to end their lives and, sadly, do so. In an effort to re-claim conversations about quality of life and to highlight the deficits in our nation’s current healthcare and long-term services systems that often foster feelings of desperation, we’ve written a Statement of Solidarity in Observance of Suicide Prevention Month, affirming the values of dignity, diversity, and full participation.

Please review the Statement (also pasted below) and consider signing on in solidarity as an organization and sending it out over your networks and to any chapters or affiliates you may have. To sign on, send us an email to NDYOutreach@gmail.com and note your organization’s name as you’d like it to appear, and the state in which you are located. We would prefer you send your sign-on as quickly as possible, but we will be receiving sign-ons until close of business, September 25, 2015.

Please feel free to forward this to other interested individuals and organizations, as we’re hoping to generate a large list of those who stand in solidarity with the values of suicide prevention.

Thank you!

 

Statement of Solidarity in Observance of Suicide Prevention Month

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, the undersigned, 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 – are at a 25 times greater risk for suicide than the general population.[2]

As a community of greater than 56 million Americans with disabilities — 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 25th 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 – like race or gender – 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, the undersigned, 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.
  • 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 to 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.

Signed,

Not Dead Yet

[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.

John Kelly’s Testimony and Diane Coleman’s Letter to the DC Council Health & Human Services Committee

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John Kelly and I both decided to add our own messages to the strong voices of disability rights advocates urging the DC Council to reject the assisted suicide bill that was the subject of the July 10th hearing before the Health & Human Services Committee.

John’s testimony on behalf of Second Thoughts Massachusetts focused on the common disability experience of misdiagnosis and grim prognosis, sharing John Norton’s personal story:

Doctors misdiagnose and give incorrect prognoses, frequently. In the disability community, we have many members who have been given a terminal diagnosis, some since birth, some more than once. One Second Thoughts member, John Norton of Florence Massachusetts, was diagnosed with ALS (Lou Gehrig’s disease) in his first year of college – in 1955. He was told he would die in 3 to 5 years.

John’s complete testimony is available here.

My letter focused on the fact that assisted suicide laws give the real choice and control to doctors, and what the Oregon data shows about which doctors are giving lethal prescriptions for what reasons:

[Y]ou might wonder why I oppose a bill that is widely portrayed as giving people choice and control over their own death.

But who actually has choice and control under assisted suicide laws?  Anyone could ask their doctor for assisted suicide, but the law gives the authority to doctors to determine who is eligible.  Doctors make the determination that a person is terminally ill and likely to die in six months, and that the request for assisted suicide is voluntary and informed.  The advertised “safeguards” in assisted suicide bills are entirely in the hands of doctors, from the diagnosis, prognosis, disclosures, request form, decision whether to refer for psychological assessment, prescription and report after death.

Who are the doctors who are giving lethal prescriptions?  The public image is that one’s own doctor, someone who knows you and has taken care of you throughout your illness, will be the one who assists your suicide.  But in Oregon, the majority of assisted suicides involve a doctor referred by Compassion and Choices.

The full text of my letter is available here.

NDY Board Chair Anne Sommers delivers powerful testimony (video)

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The disability community turned out in force to oppose an assisted suicide bill currently pending in the District of Columbia, and our help is still needed. The DC Council’s Health and Human Services Committee held a hearing on the bill (B21-38) on July 10th, and NDY’s Board Chair, Anne Sommers, delivered powerful testimony.

Her full written testimony on behalf of NDY is also available here.

The hearing is archived, but the total time of the online video is 15 hours, so Lindsay Baran of the National Council on Independent Living provided the following time markers for the awesome disability advocates who testified.

Mollie Greenberg (NCIL): 1:43:40

Samantha Crane (ASAN & also an NDY Board Officer): 3:17:25

Lindsay Baran (NCIL): 3:21:40

Georges Aguehounde (DCCIL): 4:27:25

Anne Sommers (NDY): 6:00:50

Shira Wakschlag (The Arc): 6:39:20

Maureen Hollowell (DREDF): 7:07:35

If you would like to submit written testimony or a letter opposing B21-38 “Death with Dignity Act” to the Health and Human Services Committee, the deadline is this Friday, July 24th. Written testimony can be of any length. You should address your testimony or letter to:

Committee on Health and Human Services
Attn: Malcolm Cameron
John A. Wilson Building
1350 Pennsylvania Avenue, NW, Room 115
Washington, DC 20004

To deliver it, you can either email it to the committee staffer mcameron@dccouncil.us or mail it to the address above.

It is also possible that the Judiciary Committee may submit a comment on the bill to the HHS Committee sometime in the near future.  Anyone whose testimony focuses more on the “legal” aspects of the bill could also submit written comment to the Judiciary Committee.  Written testimony to the DC Council Judiciary Committee should be addressed to:  Committee on the Judiciary, Council Member Kenyan McDuffie, Chairman, and it can be emailed to the Judiciary Committee’s Legislative Counsel, Shawn Hilgendorf at shilgendorf@dccouncil.us.

Amy Hasbrouck: The ADA is Not Dead Yet and So Are We

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The ADA is not dead yet, and so are we.

In 1991 when I was learning the details of the Americans with Disabilities Act, in order to educate others with disabilities, business owners, governments, etc., the dates for entry into compliance of many of the law’s provisions seemed very far away.  I had seen and profited from many changes wrought by earlier disability rights laws, but I had also battled for compliance and implementation.  All that to say, I didn’t know what the future under ADA would look like.
Resistance started early; bus and subway drivers didn’t want to have to announce stops.  A mechanized solution was only moderately successful, and the struggle continued until the technology caught up to the problem.  Announcements are better, if not perfect.

On the other hand, people are still fighting for effective communication (having an interpreter in the delivery room instead of via video link) and even the ADA Amendments act has not made much of a dent in employment discrimination.

Where the ADA has succeeded is in the incremental changes.  After 25 years, even the smallest businesses have made renovations, and many have taken up their obligations under the ADA to make those renovated areas accessible.  Increased access has led to a certain level of normalization; fewer people freak out when they see a disabled person.

One very ugly feature of the current socio-political landscape for people with disabilities is the growing hysteria that is the assisted suicide movement.  In 2015, assisted suicide legislation was introduced in 17 states in the U.S., defeated in some, and postponed in others.  In Canada one province has legalized euthanasia, and the Canadian Supreme Court has reversed its 1993 ruling in the Rodriguez case, and said that assisted suicide is A-OK for people with disabilities.

In 1990 I looked forward to transit access, usable print materials, more sign language interpreters, acceptance of HIV/AIDS.  What I didn’t expect is that 25 years later I would be immersed in a struggle for the lives of people with disabilities.  I didn’t expect to be confronting the great shout of the assisted suicide promoters; “WE’D RATHER BE DEAD THAN DISABLED.”  I didn’t know the effect this constant message would have on those of us who believe disability is something to be proud of.  I didn’t count on the division in the disability community; between those who want to believe that assisted suicide is an expression of autonomy and those of us who believe that there can be no free choice to die as long as we don’t have a free choice in where and how to live.  I didn’t expect the level of fear and apathy that I’ve found among people with disabilities, the reluctance to speak out about threats and abuse in the medical system.  And I certainly didn’t anticipate working side-by-side with people of faith with whom I disagree on many political and social issues.

We knew that the ADA would not end disability discrimination.  What we didn’t know is that we would have to be fighting 25 years later against the ultimate, deadliest form of discrimination.

There is a generation of disabled people who have never known a world without the ADA.  Many are exceptional advocates with an untarnished belief in their right to access and supports for full integration.  When I hear their outrage at the assisted suicide movement, I feel both comforted and inspired.
There are others who grew up with the ADA who think the struggle is over.  They want to get on with their lives, don’t want to get stuck in the “disability ghetto.”  Maybe they think that as a middle-class, skilled professional they will never be considered just another cripple.
My response is to paraphrase Justin Dart; “get involved in politics as if your life depended on it, because it does.”
Be well
-AH

Amy Hasbrouck
Toujours Vivant-Not Dead Yet
tigrlily61 @ gmail.com
http://tvndy.ca | https://facebook.com/ToujoursVivantNotDeadYet
Skype: tigrlily
450-921-3057
Valleyfield, Québec, Canada

Coleman letter published in Albany Times Union

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The Albany Times Union has editorialized and reported, recently and often, in favor of New York bills to legalize assisted suicide.  A letter I sent in response to one such editorial was published July 12:

Assisted suicide safeguards ignored

It’s hard to say whether the assisted suicide promoters featured in “A right to die with dignity” (July 1) are confused about the law or surprisingly revealing about their goals.

The new founder of Death With Dignity-Albany, holding a local meeting, talked about how horrible it was that her aunt had a feeding tube after irreparable brain damage. Feeding tubes can be removed based on the patient’s informed consent, advance directive or health care proxy’s decision. It has nothing to do with assisted suicide.

People attending the meeting wanted the proposed doctor-prescribed suicide law not to be limited to people who are predicted to die within six months or people who are considered mentally capable at the time the lethal drugs would be obtained.

The assisted suicide eligibility requirement of a six-month life expectancy, however unreliable in practice, is often touted as a “safeguard” in the so-called model Oregon law, though a 2015 bill in that state proposed to extend it to a one-year prognosis. The mental capability requirement is also a supposed safeguard, to protect against unscrupulous family members.

But these proponents’ attitudes show that assisted suicide laws may work more like highway speed limits. All too many people ignore them, no matter how many lives may be put at risk.

Diane Coleman

President/CEO, Not Dead Yet

www.notdeadyet.org

Rochester