Disability Perspective

Second Thoughts
People with Disabilities Opposing the Legalization of Assisted Suicide
“We are Massachusetts residents with disabilities who oppose the 2012 state ballot question to legalize assisted suicideThis legislation is dangerous and discriminatory, especially for elders and people with disabilities. We encourage Massachusetts voters to look deeper into the issue – to have Second Thoughts about assisted suicide.”

ARTICLES:

“Cuts risk returning disabled to the shadows, says Baroness Campbell”
(The Telegraph — April 5, 2014)
Jane Campbell has spent the last half century defying the odds.  When she was 11 months old, doctors diagnosed her with severe spinal muscular atrophy and told her parents to enjoy what little time she had left…[She] now sits as a crossbencher in the House of Lords as Baroness Campbell of Surbiton. So it should come as no surprise that, in the House of Lords this week, this remarkable fighter positioned herself at the head of the battle to stop the Government cutting the funding that enables her, and around 18,000 of the most severely disabled people in the country, to thrive in their lives and careers.

“New Hampshire Assisted Suicide Bill Redefines ‘Terminal Condition’ Broadly Enough to Make Anyone with a Significant Disability or Chronic Condition Eligible”
(Not Dead Yet — January 31, 2014)
On the face of it, it’s still a bill that would restrict “eligibility” for getting lethal doses in order to commit suicide to people with “terminal conditions.” But when you get into the actual definition, it’s clear that the sponsors of this bill want “terminal condition” to mean something other than what the rest of us mean.
More on New Hampshire

“Unconditionally Loving a Human ‘Non-Person’”
(National Review Online — January 25, 2014)
This story is important because it shows a vivid contrast between two approaches dealing with severe human disability….
I am saying it is wrong to treat our cognitively devastated brothers and sisters worse than we ever would animals or criminals through denied sustenance or looking upon them avariciously as a corn crop ripe for the harvest.

“Rhode Island Medical Reporter Quotes Second Thoughts CT Concerns about MOLST”
(Not Dead Yet — January 23, 2014)
Some people with disabilities fear that MOLST laws, already in place in several states, could result in denial of life-saving treatment to those who want it.  Although MOLST is supposed to be voluntary, these activists say some nursing homes have presented it as mandatory.  And when emergency personnel see that pink sheet tacked to the wall, will they read all its details or will they assume it means “do not resuscitate?”

“Health Insight: New R.I. law aims to ease final days of terminally ill”
(Providence Journal — January 19, 2014)
Cathy Ludlum of Second Thoughts Connecticut says that “many people with severe disabilities feel personally threatened” by the law’s definition of “terminal illness” as “an incurable condition that, without the administration of life-sustaining procedures, will, in the opinion of the attending physician, result in death.”
“By definition,” Ludlum said, “we have incurable and irreversible conditions, and many of us use life-sustaining procedures every day of our (hopefully) long lives.”

“John Kelly Talks About the Tim Bowers Case”
(Not Dead Yet — December 5, 2013)
Bowers is the Indiana hunter who was injured in a fall and died the next day when he told doctors to stop life support….I have almost exactly the same injury as Bowers and I know that reliable prognosis requires the passage of time.

“John Kelly Quoted in NPR Thanksgiving Day Article on POLST”
(Not Dead Yet — December 1, 2013)
Some members of the disability community have questioned whether POLST is being too broadly applied. Rather than giving people more control over end-of-life medical care, they say, it could mean interpreting “disabled” to mean “on death’s door.”
More on POLST

“Disability Rights Victory in Organ Procurement Protocols…”
(Not Dead Yet — November 14, 2013)
This week the Board of Directors of the Organ Procurement and Transplantation Network (OPTN) adopted a policy that removed two major threats to people with disabilities posed by previous proposals.
More on Oregon Transplant

“John Kelly’s Response to IOM Online Survey or ‘We Love Our Tubes!’”
(Not Dead Yet — November 7, 2013)
Three months ago, my nurse brought me the Massachusetts MOLST form, with its preference for certain treatments in extremis.  She had been told that they were to complete these forms with every disabled person she follows.
More on POLST

“Not Dead Yet: ‘Meet our New Regional Director, John Kelly’”
(Not Dead Yet, November 5, 2013)
“I want to introduce myself to the far-flung faithful readers of this blog and all the supporters of Not Dead Yet and our mission to halt the deadly discrimination of legalized assisted suicide and euthanasia.”

“Disability — a fate worse than death?”
(The Guardian — October 18, 2013)
As a disabled person, I’m relieved at the defeat of the voluntary assisted dying bill yesterday.  Doctors might know about our biology, but it doesn’t mean they know about our lives.

“Not Dead Yet UK: “Real Disability Activists and Masquerades”
(Not Dead Yet — October, 2013)
Have you heard of the new Disabled Activists for Dignity in Dying?  And the interesting claim that 75% of disabled people support assisted suicide/euthanasia?  Is that true?

“N.J. assisted suicide proposal is a dangerous prescription”
(Trenton Times and NJ.com — August 10, 2013)
When we’re talking about changing public policy that affects the health-care system that we all depend on and the real world of families that are not necessarily all loving and supportive, lawmakers have an obligation to think of everyone, not just those who are safe from the very real risks posed by assisted suicide legislation.

“New York State Lags on Firing Workers Who Abuse Disabled Patients”
(New York Times — August 8, 2013)
One state worker bit a patient’s ear. Another threatened a co-worker if she called the police. A third left a patient naked and bleeding. A fourth knocked a group home resident out of a chair, hit the resident on the back of the head.
All were found culpable of wrongdoing in internal disciplinary proceedings. But none was fired.

Not Dead Yet comments on POLST
(NDY press release — July 23, 2013)
Not Dead Yet provides video and written comments on POLST to the Institute of Medicine’s Committee on Approaching Death.
“‘How do we know the POLST medical order actually reflects the desires of the individual?’ [We worry] that, depending on how POLSTs are presented, they can make life-sustaining treatments — such as the use of feeding tubes — seem unbearable, even though many disabled people are able to live full lives because of them.”

“The dangerous ‘help’ of assisted suicide”
(Star Ledger, NJ — July 23, 2013)
People with disabilities and chronic conditions live on the front lines of the health care system that serves (and, sadly, often underserves) dying people. One might view us as the :canaries in the coal mine,” alerting others to dangers we see first.

“There Are Sensible Reasons Why Voters Rejected Question 2″
(Boston Globe — July 22, 2013)
Finances will inevitably affect decision-making. Thousands of Massachusetts elders are abused every year, so it’s naive to think that all families are loving and supportive….Dignity does not come at the bottom of a glass of 100 Seconal capsules.

“Assisted suicide fraught with consequences”
(Sacramento Bee — July 14, 2013)
Society must take a critical look at any proposal to legalize assisted suicide.  It’s a dangerous Pandora’s box and inevitably reduces patient choice by introducing a plethora of crushing pressures that push seriously ill people and, by extension, some with chronic illness and physical disabilities toward a final, cost-cutting conclusion.

“Not Dead Yet News & Commentary”
(Not Dead Yet — June 21, 2013)
Overview of disability rights spokesperson concerns about POLST

“Not Dead Yet Urges Secretary Sibelius and Organ Procurement and Transplantation Network to Prohibit Organ Procurers from Pressuring Sick or Injured to Give Up on Living”
(Not Dead Yet press release — June 20, 2013)

“Valuing Everyone, Or Just the Workers?”
(Huffington Post — May 11, 2013)
Disabled children should be euthanised according to Cllr Colin Brewer. According to Baroness Warnock, disabled adults should be euthanasied. Cllr Brewer also spoke about the costs and burden of disabled people….Both Baroness Warnock and Cllr Brewer suggest that disabled people or their parents should consider euthanasia to relieve the cost and burden on families and on the state.

“Colin Brewer: There is a good argument for killing some disabled babies”
(Disability News Service — May 10, 2013)
A councillor who won re-election despite having to apologise for suggesting disabled children should be “put down” to save money has told Disability News Service (DNS) he believes there is a good argument for killing some disabled babies.

“Bill allowing doctor-assisted suicide has troubling aspects”
(Lewiston Sun Journal — April 28, 2013)
For someone dealing with a new diagnosis without proper supports,trying to navigate the bureaucracy while trying to obtain mobility devices or other items critical to daily living, one can see how vulnerable patients may see assisted suicide as an easier choice.

“NDY President Diane Coleman Submits Comments on Futile Care Policies”
(April 22, 2013)
The common thread running through stories we hear is that our lives with disability are seen as less worth living, so much less that health care providers too often think that death is the correct course. They press this viewpoint on us, our families and sometimes even overrule us when we disagree.

Testimony of John B. Kelly of Second Thoughts before the Vermont House Human Services Committee (April 11, 2013)

“Disabled people may struggle to get specialty care”
(Reuters — March 16, 2013)
A 22-year-old student at Ohio State University in Columbus, she uses an electric wheelchair and finds waiting rooms and examination rooms are often hard to maneuver….Often times, she said she can’t get an appointment at all — because a facility’s entrance has steps, without a ramp or a life.

“The Deadly Failure of a Hospital to Follow a Patient’s Decisions About his Medical Care”
(Disability Rights California — February 2013)
Hospital neglected to provide medical interventions consistent with Mr. turner’s POLST when his physician revised his POLST form to say the opposite of the patient’s expressed wishes to receive life-sustaining treatment.

“Helen Keller, Anne Sullivan and Assisted Suicide”
(American Spectator — January 17, 2013)
What advice would the young Helen Keller receive if she were alive today?
Helen Keller became both blind and deaf after an illness when she was 19 months. She was taught to communicate at age 7, and she went on, during a long life of 88 years, to contribute to our lives.  Apparently no one told the story of Helen Keller to the identical Belgian twin men, age 45, cobblers both, who sought and obtained assisted suicide in Belgium in December.

“National Federation of the Blind Comments on Belgian Euthanasia of Deaf Men Losing Sight”
(NFB — January 15, 2013)
“This disturbing news from Belgium is a stark example of the common, and in this case tragic, misunderstanding of disability and its consequences. Adjustment to any disability is difficult, and deaf-blind people face their own particular challenges but from at least the time of Helen Keller it has been known that these challenges can be met….”

“Poll: Twenty Nine Percent Support in Non-Terminal Cases of Severe Pain, Disability”
(NPR & Truven Health Analytics — December 28, 2012)
Poll included question about whether a physician should be allowed to provide patients or their family members with the means to end the patient’s life if requested by the patient or family.

“NDY Activists Leaflet Justice Action Center (NY Law School)”
(Not Dead Yet — November 19, 2012)
Last Friday, three disability activists in New York City went to the Justice Action Center at the NY Law School to distribute flyers protesting the way in which a symposium on “Freedom of Choice at the End of Life” handled “issues of concern” that people with disabilities have with proponents of assisted suicide (and other “end of life” issues).  The “discussion” was relegated to a session about “special people” and the discussion framed by opponents of disability rights advocates and activists.

“Bioethicist Endorses Mass. Assisted Suicide Bill in a Sloppy and Intellectually Lazy Essay”
(Not Dead Yet — November 2, 2012)
The organizations pushing legalization of assisted suicide are sophisticated and well-funded. And, like many advocacy organizations, they are following an incrementalist strategy in terms of their policy goals. Through polling, focus groups and experience, they’ve developed a vocabulary about these topics that draws a favorable response from the public. And, for the moment, the more “respectable” groups are sticking to policy that is allegedly limited to people who are “terminally ill.”
But the signs of more expansive “advocacy” are already in evidence.

“NY Law School — Justice Action Center’s Upcoming Annual Justice Symposium Not Fair to Disability Advocates, Let Alone ‘Just’”
(Not Dead Yet — October 24, 2012)
It would be understandable if you thought that this was actually an event planned and presented by Compassion and Choices, with the Justice Action Center merely playing the host. It would be clear because the presence of Compassion and Choices activists dominates this symposium.

“Family of Down’s patient sue hospital over DNR order”
(The Guardian — September 12, 2012)
Relatives allege doctor at NHS hospital in Kent added “do not resuscitate” order to man’s notes on basis of his disability …After he was discharged, a carer unpacking his bag found a DNR form. “It was folded in four in his belongings. She was absolutely horrified, The issue had not been discussed with any relatives at the hospital. X said.

“Conundrum of a Death Foretold”
(New York Times — August 27, 2012)
For some, wheelchairs and prosthetic limbs may seem the very emblem of triumph over life’s vicissitudes. But, for many, those same device are prisons without hope of reprieve, symbols of ailments that preclude the striving for athletic redemtion.

“Assisted Suicide Laws Violate the ADA”
(Not Dead Yet — July 25, 2012)
Not Dead Yet has always taken the position that assisted suicide laws violate the ADA by setting up a double standard for how society responds to a person who says they want to commit suicide – some people get suicide prevention and others get suicide assistance, and the difference is the person’s health and disability status.

“It’s expensive to support the disabled – suicide kits are $39.95″
(Winnepeg Free Press — July 21, 2012)
Arthur Schafer’s portrayal of comments on the merits of physician-assisted suicide need challenging.  Schafer, like many supports of physician-assisted suicide (also known as “doctor-prescribed death”), does not seem to have considered the wider issues facing Canadians with disabilities, including the ongoing social prejudice and discouraging lack of living supports that we encounter on a daily basis.

“Disability Discrimination: The Author Responds”
(Hastings Center Bioethics Forum — July 27, 2012)
Worse yet, few scholars have discussed the implications of New York State’s Palliative Care Information Act for people with disability. The law, which went into effect in 2011, requires “physicians and nurse practitioners to offer terminally-ill patients information and counseling concerning palliative care and end of life options.”  The hospitalist I met did this — my prognosis was made clear, the range of options discussed…. The problem is, at no point was I terminally ill.

“Comfort Care as Denial of Personhood”
(Hastings Center Report — July-August 2012)
“Many assume that disability is a fate worse than death. So we admire people with disability who want to die, and we shake our collective heads in confusion when they want to live.”

“Disability Discrimination”
(Hastings Center bioethics forum — July 11, 2012)
While he had no illusions about the gravity of his condition William J. Peace was unprepared for what a hospital physician said to him.  Peace wrote, “Although not explicitly stated, the message was loud and clear. “I can help you to die peacefully.”

“Assisted Suicide and Disability: Another Perspective”
(Diane Coleman — American Bar Association; Section of Individual Rights and Responsibilities)
“I don’t want to live like this one more day,” she said firmly.  “I’ve had enough.” She had been forced, at 26 to leave her masters program. Her car had been repossessed. Following a miscarriage, her marriage had broken up. Her brother had drowned. And now her mother had been diagnosed with cancer.

“Assisted suicide laws create discriminatory double standard for who gets suicide and who gets suicide assistance: Not Dead Yet Responds to Autonomy, Inc.”
Diane Coleman — Disability and Health Journal — 2010)

“Key Objections to the Legalization of Assisted Suicide”
(DREDF — Disability Rights Education and Defense Fund)
Ten key objections with links to documentation.

“Killing us softly: the dangers of legalizing assisted suicide”
(Marilyn Golden & Tyler Zoanni — Disability and Health Journal – 2010)
Overview of the problems with the legalization of assisted suicide as public policy.

“No. we don’t think our doctors are out to get us: Responding to the straw man distortions of disability rights arguments against assisted suicide”
(Carol Gill — Disability and Health Journal – 2010)
The arguments that disability rights advocates present in opposition to legalized assisted suicide are frequently misconstrued in public debate.

“Public Health, populations, and lethal ingestion”
(Kirk Allison — Disability and Health Journal — 2010)
In 2008 the American Public Health Association endorsed lethal ingestion as a public health policy as part of “Patients’ Rights to Self-Determination at the end of Life.”