“We’re told we are a burden. No wonder disabled people fear assisted suicide”
(The Guardian — June 1, 2018)
Society’s priority should be to assist us to live, not to die. Provide a free social care system funded by progressive taxation that allows us to be productive, active community members. Increase NHS funding. Cur waiting lists — there are currently 4 million people awaiting treatment. Fund wheelchairs and assistive technology. Root out disableism that leads two-thirds of people with disabilities to think that we’re a burden on society. Only then can you come back to me and tell me that assisted suicide is no risk to disabled people.
More on United Kingdom
“Risk of coercion too high to OK assisted suicide”
(The Daily Star — May 14, 2018)
Comparing people with a terminal prognosis to a pet that is “unable to care for itself and is in constant pain” raises understandable concerns among disabled people who need personal care services like me. When it comes to killing our pets, studies show it’s more about putting them out of the owner’s misery than the pet’s….
So let’s stop conflating pets and people. In a society with an alarming increase in elder abuse, the risks of coercion and foul play should be obvious. There are no “safeguards” that work behind closed doors.
More on New York
Press Release: NY Disability Advocates Testify Against Assisted Suicide Bill
(Not Dead Yet — April 23, 2018)
Testimony of Kathryn Carroll, Esq., of the Center for Disability Rights, Inc.
Testimony of Mel Tanzman of NY Assn. on Independent Living
More on New York
“Forum: Why the disability community opposes doctor assisted suicide”
(New Haven Register — March 28, 2018)
For us, the issue centers around how much and what kind of power a doctor should be given….If we enact assisted suicide laws, we normalize death as part of the doctor’s black bag. We expand the role of a doctor from provider of healthcare, be it curative, rehabilitative or palliative, to agent of death.
“The Opioid Crisis the News Isn’t Talking About”
(Not Dead Yet — February 20, 2018)
What we are seeing is many disabled people who are suffering due to the lack of access to opioid medication previously available as part of comprehensive strategies and approaches to address chronic pain….For some disabled people, opioids are the only medication or treatment that can help their pain. Now, those who have chronic pain are treated with suspicion.
More on Pain Control
“Questions and Answers about the Association Provision of the Americans with Disabilities Act”
(U.S. Equal Employment Opportunity Commission)
The “association” provision of the Americans with Disabilities Act (ADA) protects applicants and employees from discrimination based on their relationship or association with an individual with a disability, whether or not the applicant or employee has a disability.
The purpose of the association provision is to prevent employers from taking adverse actions based on unfounded stereotypes and assumptions about individuals who associate with people who have disabilities.
“Are You Old? Infirm? Then Kindly Disappear”
(New York Times — December 16, 2017)
“Doctors’ offices are the worst,” she added, describing how receptionists address whoever’s pushing her. “I’m not acknowledged. Does this lady have an appointment?” “Does this lady have a medical card?” They don’t allow this lady to have a brain.
But it’s not just receptionists. Its Flight attendants…They make dismissive assumptions about people above a certain age or below a certain level of physical competence. Or they simply edit those people out of the frame.
“Short and Strong: John Kelly’s Testimony in Massachusetts”
(Not Dead Yet — October 16, 2017)
Cost-cutting is in the news. Given this reality, assisted suicide takes choices away.
It’s no choice when:
One out of every 10 elders in Massachusetts is abused every year, almost always by adult children and caregivers.
When no official witness is required at the death and an heir can help sign you up, pick up the prescribed overdose, and then take action against you with guaranteed immunity.
More on Massachusetts
“Assisted suicide is dangerously disablist”
(Global Comment — September 22, 2017)
Perhaps the most worrying aspect of the current assisted suicide debate in the UK and around the world is the idea that suicide prevention is very, very important and to be prioritised, but only for non-disabled people.
“I Oppose Assisted Suicide and Euthanasia Because It Is Ableist”
(Not Dead Yet — August 15, 2017)
Ableism, like racism and sexism, is an ugly prejudice that society holds towards its minority members….Are you really wanting to create this “special class” of people who can be killed and no one prosecuted? That is what happens in Oregon.
“Case of maggots in throat offers rare look at neglect probes”
(AP News — August 10, 2017)
In his bed at a New York state group home for the severely disabled, Steven Wenger lay helpless against a silent invader. It was the first of two infestations of the larval flies in his throat over successive days last summer…If the Associated Press had not obtained a confidential report on the case, it’s unlikely anyone in the outside world would have known anything about it.
That’s because in New York and most other states, details of abuse and neglect investigations in state-regulated institutions for the disabled, addicted and mentally ill are almost never made public, even with the names blacked out.
[What can families do if they have a loved one who needs a group home?]
In the absence of publicly available information, Leslie Morrison, director of investigations for the advocacy group Disability Rights California, advises families to do their own detective work.
“Go visit the facility. There’s nothing better than walking around, doing a sniff test, doing is unannounced,” she said. “If you can get in the door, that is. If you can’t get in the door, that might suggest something to me also.”
“Disability Rights Toolkit for Advocacy Against Legalization of Assisted Suicide”
(Not Dead Yet — posted June 23 2017)
The perspective of the disability rights organizations and advocates that oppose legalization of assisted suicide are an essential part of the public debate, in keeping with the fundamental principle, “Nothing About Us Without Us!”
“MS patient Colin Campbell moves 200 miles for disabled-friendly flat after deferring assisted suicide”
(Herald Scotland — June 27, 2017)
Colin Campbell expected to be dead by now. The form IT consultant from Iverness had decided to “take control” over his long-running battle with multiple sclerosis and planned to end his life at an assisted suicide clinic in Switzerland….[A] housing association stepped in to offer him a ground floor flat nearly 200 miles away in a “supported accommodation” complex in Greenock…He said the move to Greenock would give him a new lease on life.
“NDY Activists Deliver Counter to NY Assisted Suicide Proponents’ Lobby Day”
(Not Dead Yet — May 9, 2017)
“There’s no way to open this door just enough,” Adam Prizio, government affairs manager for the Center for Disability Rights, told the Times Union earlier this year. “No matter where you open it, some number of people with disabilities will be killed through coercion, through abuse, or through insurance companies trying to save money.”
More on New York
“Physician-Assisted Suicide Tells People Like Me That Our Lives Are No Longer Worth Living”
(The Public Discourse — May 2017)
Proponents of physician-assisted suicide tell people like me that because we have reached a certain point of disability, illness, or limitation, we might as well throw it all away. They tell us sweetly, “we would certainly understand if you chose not to live. Because we care about your dignity, we want you to have the opportunity to kill yourself, since your life is clearly no longer valuable.”
“Disability Advocate Sheryl Grossman Gives Moving Testimony Against Maryland Assisted Suicide Bill”
(Not Dead Yet — February 16, 2017)
“As a disabled person, this bill scares me even more because I know the societal barriers (stigma and discrimination) that we face. [Referring to a doctor] On her way out she said, ‘I don’t understand why you want to live like this….'”
More on Maryland
More about Scheryl Grossman
“NDY Urges AMA to Affirm Longstanding Opposition to Legalizing Assisted Suicide”
(Not Dead Yet — February 15, 2017)
One of the most frequently repeated claims by proponents of assisted suicide laws is that there is “no evidence or data” to support any claim that these laws are subject to abuse…” These claims are demonstrably false.
More on Oregon
“Everyone should have the right to assisted suicide — or no one should”
(VOX — November 21, 2016)
Equal rights means equal suicide protection….Are you healthy? Do you think that your health makes your life more valuable that a terminally ill person’s? Do you think that his life should get less protection from suicidal desires?
If so, the disability rights movement has a bumper sticker for you: “I support the right to die. You go first.”
“Two Disability Statements Issued After the Election of President-Elect Trump”
(Not Dead Yet & ADAPT — November 10, 2016)
“At present there are efforts to legalize physician assisted suicide, The Disability Community is strongly opposed to this policy change which will open the door for people with disabilities to have their lives ended by mistake, coercion, or abuse…”
“Statement On Mourning the Death of Jerika Bolen”
(Not Dead Yet — September 23, 2016)
Today disability advocates mourn the death of Jerika Bolen, a 14-year-old black, gay teen with spinal muscular atrophy type II (SMA)…Our experience as disability rights advocates, many of whom have SMA and similar neuromuscular conditions, is that people with Type II SMA and the level of function that Jerika had as a teenager live long into adulthood….From whom did Jerika get the idea that she could go into hospice and get assistance to end her life?
“Disability Advocates Push for Better Healthcare for Jerika Bolen”
(Not Dead Yet — September 7, 2015)
“This non-terminally ill child is reportedly going to be placed into hospice….While Ms. Bolen maintains optimal respiratory health using a bipap machine with a mask to assist breathing at night, she is able to breathe to sustain life without that device for a very long period of time daily….”
“British doctors reject neutrality on assisted dying”
(BioEdge — June 25, 2016)
A proposal for the British Medical Association (BMA) to adopt a neutral stance on assisted suicide and euthanasia failed by a huge margin (63% to 37%) on June 21. That marked the eighth time 1n 13 years that the BMA had debated the issue.
More on United Kingdom
Disability rights activists hailed the vote:
“Relief after doctors maintain strong opposition to assisted suicide.”
(Disability News Service — June 23, 2016)
“Choosing Hospital Over Heaven: A Life Worth Living”
(Med Page Today — May 2, 2016)
People aren’t as disabled by their condition as they are by the world they inhabit.
“Not Dead Yet Testimony Opposing Minnesota Assisted Suicide Bill”
(March 16, 2016)
As usual proponents hinge their arguments on the claim that the Oregon experience proves that the law is safe. They never mention the deficiently minimal reporting and non-existent investigation or oversight under the Oregon law. They definitely never mention the cases of abuse that have come to light through mainstream press and professional journals….Assisted suicide laws grant blanket immunity and effectively foreclose investigation of wrongdoing.
“View: ‘Aid in Dying’ devalues people with disabilities”
(Lohud — March 15, 2016)
Individuals with disabilities have shown throughout the ages that they can reach great heights in life regardless of barriers, and that they can use their experiences to help others. This is true progressive thinking….Think of how many individuals could have chosen to end their lives during the days when HIV was perceived as a death sentence.
“A Resource for Parents of Kids with ASD, CRS, or Fibromyalgia”
(Caring 4 our kids)
Teaching Important Life Skills to Kids with Autism.
“Estate Planning for Parents of Children with Autism”
Planning for the future when you have a child with autism can be difficult, but if you take a forthright approach, you will have the way toward a successful life for your child with autism, even if you are not longer around to take care of them.
“Where the prescription for autism can be death”
(Washington Post — February 24, 2016)
Thus did a man in his 30s whose only diagnosis was autism become one of 110 people to be euthanized for mental disorders in the Netherlands between 2011 and 2014. That’s the rough equivalent of 2,000 people in the United States.
More on Holland
“Aid in living, not dying”
(Baltimore Sun — February 24, 2016)
Around the country we have seen a concerted effort by special interest groups to promote the legalization of physician-assisted suicide, including legislation introduced in Maryland. Although these groups claim to be speaking for people with chronic illnesses and disabilities, no majot disabilities rights groups support physician-assisted suicide. In fact, these laws make people with disabilities more vulnerable and reinforce the damaging perception that life with a disability is “undignified” and not worth living.
“I choose to live!”
(Chieftain — January 30, 2016)
Some people try to disguise this topic with fancy euphemisms; however, I call it what it is: assisted suicide. It is very important to be up front, clear and honest about what this is. Couching it in pretty language and hiding the truth is disingenuous at best and dangerous at worst. I am not against people who want to commit suicide. I am against passing a bill that says if you are nondisabled and feel suicidal, you will get help to live, whether you want it or not. But if you are disabled or sick and want to die, you will be seen as brave and helped to die.
“Guest Commentary: Legalizing assisted suicide in Colorado would threaten disabled”
(Denver Post — January 15, 2016)
If I were to become depressed and this bill passes, I could go to my doctor and ask for a lethal prescription. Because I have a disability, and because physicians are terrible at evaluating quality of life of people with disabilities, I would likely be given that prescription, rather than be referred for mental health treatment….A woman in my situation but without my disabilities would not get a lethal prescription, and would likely encounter a vigorous effort to ensure she did not take her life. That is disability discrimination.
“Why disabled people like me fear medically assisted suicide”
(Syracuse.com — November 5, 2015)
I, along with my allies in the disability community, urge all New Yorkers to understand that assisted suicide is not a “right” to be glorified, but a double standard that is lethal to communities that are already marginalized, oppressed and abused. We deserve the same suicide prevention that nondisabled people enjoy, because despite the widespread belief otherwise, I assure you, our lives are worth living.
More on New York
More on Oregon
“NDY Denounces Governor’s Decision on Assisted Suicide Bill”
(Not Dead Yet — October 5, 2015)
Governor Brown’s message accompanying his action states that he “carefully read” materials from opponents such as “those who champion disability rights,” but he nevertheless seems to have missed key facts.
More on California
NDY Advocate Lillibeth Navarro Speaks at Sacramento CA Rally
(September 25, 2015)
Among the disability leaders speaking at the rally was Lillibeth Navarro who discussed cost-cutting pressures on elders and people with disabilities to forego life sustaining medical care. These pressures too often come from doctors, who would be the gatekeepers of assisted suicide.
More on California
Not Dead Yet’s Letter to Governor Jerry Brown Urging Veto of Assisted Suicide Bill
(September 22, 2015)
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 suicide. This 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.”
“Why Assisted Suicide Must Not Be Legalized”
(DREDF — Disability Rights Education & Defense Fund)
“The vulnerable will be the victims”
(USA Today — October 20, 2015)
California required legislative sleight of hand to pass physician-assisted suicide in a special legislative session that bypassed committee votes…Oregon reports that pain doesn’t even make the top five reasons people seek doctor-assisted suicide. Instead, people are afraid of losing autonomy and dignity. Notably, they’re afraid of becoming a burden on others.
In the face of a youth-worshipping country that marginalizes the sick and dying, we should resist making the vulnerable feel like a burden — not make it easier for them to kill themselves. Dignity doesn’t come from the illusion of power and control, but from mutual dependence and love.
“As assisted suicide laws spread, cancer survivors, disabled object”
(McClatchy DC — July 13, 2015)
In 2002, Chasity Phillips was diagnosed with incurable bone cancer in her chest; despite being terminally ill, she has managed to live a rich, full life with pain management.
“Disabled rights advocates fight assisted suicide legislation”
(USA Today — June 28, 2015)
When he was 19, Anthony Orefice hit a telephone pole on his motorcycle going 100 miles per hour. Doctors told his family he wouldn’t survive….As California legislators consider a bill that would allow terminally ill patients to get prescriptions to end their lives, disability rights advocates are speaking up in opposition. They worry that if it becomes law, depression and incorrect prognoses may lead people with serious disabilities to end their lives prematurely.
More on California
“Disability Activists Urge Princeton University to Denounce Professor Peter Singer’s Comments, Call for His Resignation”
(Not Dead Yet — June 8, 2015)
Since 1980, Singer has promoted public policy that would legalize the killing of disabled infants in the first month of life. More recently he has expanded his position in the context of health care rationing….In an article, Singer spoke hypothetically of assigning a life with quadriplegia as roughly half that of a life without any disability at all. On this basis, Singer laid out a case for denying health care to people with significant disabilities on the basis that these lives have less value than the lives of nondisabled people.
“Why disability rights advocates oppose assisted suicide”
(Syracuse.com — May 11, 2015)
Simply put, assisted suicide sets up a double standard, with suicide prevention for some and suicide assistance for others, depending on their health or disability. If such distinctions were based on race or ethnicity, we’d call it bigotry. The dangers of mistake, coercion and abuse it poses to old, ill and disabled people are rooted in a profound and still largely unacknowledged devaluation of our lives.
“Professor, do your homework,” disability group tells Singer”
(BioEdge — May 8, 2015)
Klein elicited from [Princeton Professor Peter] Singer the claim that government-funded health care should include rationing and that we should acknowledge the necessity of “intentionally ending the lives of severely disabled infants.”
“Response to Controversial Peter Singer Interview”
(National Council on Disability — April 23, 2015)
“The National Council on Independent Living — latest organization to oppose Senate Bill 128”
(April 13, 2015)
It reinforces stereotypes that depending on others for assistance with activities of daily living is not dignified, which the disability community strongly opposes.
Position Statement on SB 676/ HB 1021, Death with Dignity Act
(The Arc — March 2015)
The Arc Maryland’s concerns include lack of protections, historic discrimination in the medical field based on perceived “quality of life” of persons with disabilities, and lack of treatment and other options….
More on Maryland
“Assisted suicide would be fraught with problems and abuses”
(CT Mirror — March 6, 2015)
Led by a vocal disability community, opposition to assisted suicide cannot be reduced to soundbites. Death is far too important for six-word slogans — like ‘My Life. My Death. My Choice.” Instead, let us examine the real issues — the mistakes, coercion, and abuse that are inevitable and which cannot be fixed.
“Edmonton reaction mixed to Supreme Court of Canada’s decision to strike down the ban on assisted suicide in Canada”
(Edmonton Sun — February 6, 2015)
“Back in 2012, parliament gave unanimous consent to the idea of a national suicide prevention strategy and now we say, except people who are incredibly ill or disabled get a right to assisted suicide. Everyone else gets suicide prevention.” said Mark Pickup.
“Diane Coleman:’s Letter to Some New Jersey Senate Democrats”
(Not Dead Yet — February 5, 2015)
The idea of mixing a cost-cutting “treatment” such as assisted suicide into a broken, cost-conscious health care system that’s poorly designed to meet dying patient’s needs is dangerous to the thousands of people whose health care costs the most — mainly people living with a disability, the elderly and chronically ill….
When you look at assisted suicide based on one individual, it often looks acceptable. But when you examine how legalization affects the vast majority of us, the dangers to the many far outweigh any alleged benefits to a few.
“Making lethal, legal”
(Colorado Springs Independent — February 4, 2015)
Carrie Lucas, a juvenile and disability rights attorney who lives in Windsor, is among the opponents. Lucas has muscular dystrophy that began shutting down her muscle function in her teens. Now 43, she is a quadriplegic who needs a ventilator to breathe. Since her disease is terminal, and without assistance she would be within hours of death, Lucas says she’d qualify for assisted suicide under HB 15-1135.
“Euthanasia is so accepted that doctors must now justify prolonging a life”
(National Post — January 28, 2015)
Once “an average Dutchman who thought of euthanasia as one of the crown jewels of our liberal country,” van Loenen became “someone who was shocked by the harsh tone used by the Dutch when they talked about handicapped life.”…One of van Loenen’s settled convictions is that what begins in compassion invariably creeps over to the dark side.
“Trapped in His Body for 12 Years, a Man Breaks Free”
(NPR — January 9, 2015)
[A]t age 12, his life took an unexpected turn. He came down with a strange illness….His parents, Rodney and Joan Pistorius, were told that he was as good as not there, a vegetable….He thinks he began to wake up when he was 14 or 15 years old. “I was aware of everything, just like any normal person,” Martin says.
But although he could see and understand everything, he couldn’t move his body.
“John Kelly Talks About the Tim Bowers Case”
(Not Dead Yet — December 5, 2014)
Based on this misinformation from doctors, and his and his loved one’s fears about life in a wheelchair, Tim Bowers gave his consent to dying on the first day after his injury. In no way was his decision based on informed consent.
“Another View: Disabled have their own beliefs on ‘death with dignity'”
(Sacramento Bee — November 15, 2014)
The death of Brittany Maynard has generated attention on “death with dignity” and a push to enact laws on physician-assisted suicide in California….Many of us find the concept of “death with dignity” demeaning and devaluing since it implies that your state of being is “undignified.”
Who’s really hurt by assisted suicide?
(CNN — November 4, 2014)
The idea of mixing a cost-cutting “treatment” such as assisted suicide into a broken, cost-conscious health care system that’s poorly designed to meet dying patients’ needs is dangerous to the thousands of people whose health care costs the most — mainly people living with a disability, the elderly and chronically ill….When you look at assisted suicide based on one individual, it often looks acceptable. But when you examine how legalization affects the vast majority of us — especially the most vulnerable — the dangers to the many far outweigh any alleged benefits to a few.
“Assisted suicide is bad medicine”
(Sacramento Bee — November 2, 2014)
Why, when listing opponents, did The Sacramento Bee editorial pushing an assisted-suicide law ignore the disability community? We could be those most affected…. Direct coercion is not even necessary. Denying, of even merely delaying, expensive, life-sustaining treatment can drive patients toward assisted suicide. It is a deadly mix with our cost-driven health care system.
“Assisted suicide debate masks disability prejudice”
(Chronicle Herald — Canada — October 14, 2014)
Annual statistics reported by the Oregon Department of Human Services document the three most common reasons for choosing assisted suicide: “concerns about losing autonomy, being less able to engage in activities that make life enjoyable and loss of dignity.”…By sanctioning medical assistance to end a life for these reasons, when physical dependence and limitation are accepted uncritically as reasons to die, disability prejudice is elevated to the level of public policy.
“The danger of assisted suicide laws”
(CNN – October 13, 2014)
My heart goes out to Brittany Maynard, who is dying of brain cancer and who wrote last week about her desire for what is often referred to as “death with dignity.”
Yet while I have every sympathy for her situation, it is important to remember that for every case such as this, there are hundreds — or thousands — more people who could be significantly harmed if assisted suicide is legal…At less than $300, assisted suicide is, to put it bluntly, the cheapest treatment for a terminal illness. This means that in places where assisted suicide is legal, coercion is not even necessary. If life-sustaining expansive treatment is denied or even merely delayed, patients will be steered toward assisted suicide, where it is legal.
More on Oregon
“Joan Rivers Will Never be a Carrot”
(National Review Online — September 1, 2014)
We need to stop using the V-word to describe our brothers and sisters with profound cognitive disabilities. That word is just as bigoted as the N-word for people of sub Saharan African descent, the K-word for Jews, or the C-word for women.
“Living with dignity”
(Saturday Paper — August 16, 2014)
Euthanasia can’t be considered voluntary in a society that stigmatises the disabled, the suffering and the aged.
“The Progressive Case Against Assisted Suicide”
(Huffington Post — August 4, 2014)
I also reject the attempt by a small group of wealthy elites trying to turn assisted suicide into some right-wing or religious debate….We must all take a skeptical look and acknowledge the role that money and power play in end-of-life decisions, and how assisted suicide is being used by some health care companies and decision-makers to increase their bottom line by denying treatment.
“Assisted suicide: Disability groups are opposed”
(Missoulian — August 4, 2014)
[R]eaders need to know that all of the major national disability organizations that have taken a position on the issue oppose legalizing assisted suicide….These organizations view public policy with a deep historical knowledge of how old, ill and disabled people are devalued by society and, too often, even by our own families.
“Disabled people like me need help to live, not die”
(The Guardian — July 16, 2014)
I am terrified by Lord Falconer’s assisted dying bill — and so are the doctors who would have to act as suicide judges.
“Tanni Grey-Thompson on assisted dying”
(New Statesman — July 15, 2014)
“People come up to me and say ‘I wouldn’t want to live if I was like you.”
“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.”
(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.”