Canadian Assisted Suicide Case Sparks Dueling Letters on Disability

Canadian assisted suicide proponents lost a bid to legalize assisted suicide through Parliament last year.  This year, they turned to the courts to challenge Canada’s laws against assisted suicide and euthanasia as unconstitutional.  The case is now before the Canadian court in Vancouver and the proceedings began November 14, 2011.  Plaintiffs include a woman with ALS.

The public debate is well underway.  On November 13, the Calgary Herald published an op ed by three opponents of legalization entitled “Why we should be afraid of assisted suicide.”   The authors describe the case as follows:

Carter vs. Attorney General of Canada brings a constitutional challenge to Canada's laws prohibiting assisted suicide and euthanasia. The case also seeks to legalize these practices as a medical treatment. Last year, a bill in Parliament seeking a similar result was overwhelmingly defeated…. The vote was 228 to 59.

Carter seeks to allow a medical practitioner or a person "acting under the general supervision of a medical practitioner" to assist a patient's suicide. … In the context of traditional medical treatment, "a person acting under the general supervision of a medical practitioner" would include a family member. …

As the authors point out, eligibility would not be limited to people whose condition is terminal:

In Carter, the amended notice of civil claim argues that laws prohibiting physician-assisted suicide are unconstitutional for patients who are "grievously and irremediably ill." The term is not defined. The amended notice of civil claim does, however, give these examples of qualifying diseases/ conditions: "cancer, chronic renal failure and/or cardiac failure, and degenerative neurological diseases such as Huntington's disease and multiple sclerosis." The phrase "grievously and irremediably ill" would also appear to apply to chronic conditions such as diabetes and HIV/AIDS. People who have these diseases and conditions can have years and, sometimes, decades to live.

In response to this op ed, James Swanson, a man with a severely disabled father and friend, sent an angry letter filled with the rhetoric of disability bigotry, which the Herald’s editors entitled “Trapped alive”: 

With one deft scratch of the quill, the authors of this article have condemned hundreds of people to a life in hell. They include both my father and a good friend, who both live in Edmonton, and are both intelligent people who have become trapped in bodies that are failing. My father's life, as he knew it, ended several years ago when he was struck down by an automobile while out jogging. What parts of his body that are left, reside in a wheelchair. This once-active man in his 90s now resides in a body that is self-destructing in a painful manner. My dad has no quality of life, only a hope that the next day will not be as painful as the last.

My friend is still practising her profession, despite the advanced ALS that has a hold on her. She has made arrangements for a death with dignity in a far more compassionate country. Her ability and foresight have allowed her to control her own future.

Our non-disabled allies called out for a disability response, and two were carried in the online publication.  Mine focused on Swanson’s devaluation of people with severe disabilities and called for equality in suicide prevention: 

James G. Swanson's letter demonstrates the profound devaluation that too many feel toward those of us with severe physical disabilities. Swanson describes his father and a friend, disabled by an accident and ALS, respectively, as "trapped" and "condemned to a life in hell." Social messages that one is "better off dead than disabled" permeate society, including our families.

Swanson's solution to the so-called problem of disability is assisted suicide. Like most, he hasn't noticed the difference between suicide and assisted suicide. Apparently, he doesn't think it matters if someone's family views their life as devoid of quality. There's no sign of concern that we might feel that our existence is a burden to those closest to us. The Council of Canadians with Disabilities rightly opposes assisted suicide. A society that not only agrees with a disabled person's suicide, but guarantees that our suicide attempt results in death, is not treating us as equals. We deserve the same suicide prevention as everybody else, not a streamlined path to death.

The second, submitted by Alison Davis, a disabled woman who leads the UK group No Less Human, talked about the life she would have missed if assisted suicide were legal:

I was glad to see your excellent editorial stating the case against euthanasia. If it had been available to me some years ago, I wouldn't now be writing to you. I have several severe disabling conditions. I use a wheelchair full time and a vent at night. I have severe pain, which even morphine can't control.

I wanted to die for more than 10 years, at a time when doctors thought my life expectancy was very short. I attempted suicide seriously several times, and was saved, only because friends found me in time and took me to the emergency room, where I was treated.

At first, I was angry with them for thwarting my wishes. Now, I'm eternally grateful. I want to live now, even though my pain is worse than it was when I wanted to die. What changed my mind is friends who refused to accept my view that my life had no value, and a group of very poor children, who loved me wonderfully and overwhelmingly. I found a reason to live in reaching out to help others, rather than turning the negativity on myself. If assisted suicide had been available then, no one would ever have known the doctors' prognosis was wrong, or that I'd be missing the best years of my life.

The Canadian Department of Justice has filed various affidavits in the case, including one by Rhonda Wiebe, a woman with disabilities who is Vice President of the Council of Canadians with Disabilities   and Co-Chair of the CCD Ending of Life Ethics Committee and, I’m happy to report, a new member of Not Dead Yet’s Board of Directors.  We’ll be following the case closely. – Diane Coleman

Hydrocephalus, Spina Bifida and Medical Killing - Current News from DRI and a History Supplement from Me

Yesterday, someone forwarded me the latest mailing from Disability Rights International (DRI), this particular one came in the form of a message from the organization's president, Laurie Ahern.  The shortest explanation of the organization's mission can be found in its mission statement on the "about" page of their site: "Disability Rights International is dedicated to promoting the human rights and full participation in society of people with disabilities worldwide."  There is, of course, a lot more to know and learn about the organization than that and I encourage people to explore DRI's site at the links provided above.


The message from Laurie Ahern regarded, in part, the baby boy seen in the picture below.

The picture above is of a 6 month old boy lying in a crib whose head recently burst due to untreated hydrocephalus. Doctors expect the boy to die "anytime."

source: http://ih.constantcontact.com/fs031/1101730023584/img/50.jpg

The following message can be found on the main page of DRI right now, but main page items tend to get moved off the page after a few weeks or months.  This alternative link looks like it might be permanent.

Excerpt:

We Need Your Help to Protect the Rights  of Children with Disabilities Around the World

Dear DRI Supporters, Several weeks ago, I visited a baby house in Eastern Europe. It houses about 130 infants and small children, a third of whom are children with disabilities. Most babies are eventually returned to their birth parents, put into foster care or are adopted. But not the babies with disabilities. They have nowhere to go. Among children with disabilities, almost 30% died last year. I walked with trepidation into each dark room. In the middle of the day, not a sound. Not one child crying. They learn quickly that no one comes. One room after another, children with disabilities lay dying. Hydrocephalus and spina bifida are left untreated, despite the fact that the country has the means to care for these conditions. I was told that doctors will not perform surgery on children with disabilities who "have no future." And many die from lack of touch and love, despite adequate food and heat. One six month old baby with hydrocephalus still haunts my dreams. The condition (caused by a buildup of spinal fluid in the head) can easily be corrected by the insertion of a shunt. But instead, this little boy had a "burst" -his head blew a hole from the pressure. He lay in his crib dying an agonizing death.

 The rest of the message describes the situation in other locations and the efforts that DRI is undertaking to end this large-scale abandonment and extermination of children with disabilities.  Repeating myself, it's worth your time to read the rest of the message and consider adding DRI to your list of organizations to consider supporting with a contribution.

I want to caution people - specifically and especially my fellow Americans - that we shouldn't feel any sense of moral superiority here.  The picture of the child with hydrocephalus who was abandoned and left untreated to die happened all too often in the United States, although no one can be certain how many children died that way.

One notorious example involved a "study" at Oklahoma's Children's Hospital a little over three decades ago.  Here's a link and an excerpt to a blog entry on my personal site that reproduced the 1994 article "It Can Happen Here."

Selecting Kids with Spina Bifida and Hydrocephalus for Death

Oklahoma, 1977-1982

It Can Happen Here
by John R. Woodward

American doctors once conducted an experiment that proved you can kill the disabled babies of poor families and get away with it. Their research was funded by the Federal Government. Twenty-four babies with spina bifida lost their lives.

The experiment was declared a success. Yes, it can happen here.

Between 1977 and 1982, four doctors and a social worker at the Children's Hospital of Oklahoma, in Oklahoma City, monitored the births of babies with myelomeningocele (the medical term for spina bifida). Parents who were poor were told that it would not be appropriate to treat their baby and given an extremely pessimistic picture of their child's future life. Parents from better-off families were told more about the treatments for spina bifida and given more optimistic - and more accurate - information about their child's potential.

None of the parents knew they were part of an experiment. Parents who were assigned to the "pessimistic outcome" group chose, by a factor of nearly five to one, not to have their babies treated. The experiment was not conducted to prove that babies with spina bifida will die if they are not treated. Doctors already knew that. The goal of the experiment was to prove that the families would accept a "do-not-treat" recommendation from their doctors.

 As far as we know babies with spina bifida and hydrocephalus die through withholding of treatment in the US, although it's probable that withholding of nutrition and hydration coupled with pain relief shorten the dying period and decrease the suffering for the infants.

And, of course, in the Netherlands, they moved on several years ago to the outright killing of infants with spina bifida and hydrocephalus.  The fact that medical professionals in the US and the Netherlands have made ending the lives of infants with disabilities more efficient and freer of discomfort is a rather shaky claim to the high moral ground.

So let's all remember as we agree that outrage is legitimate over the treatment of infants with disabilities in Eastern Europe, the United States and other "progressive" countries really don't have a high moral horse to sit on.  --Stephen Drake, born 56 years ago today; a survivor of hydrocephalus and a "do not treat" recommendation.  (and three shunt operations)

Followup - DutchNews.nl Corrects Errors in Euthanasia Story While Associated Press Ignores Its Errors

As promised in last week's blog entry, I contacted responsible parties at both the Associated Press and DutchNews.nl about needed corrections in a Dutch group's advocacy for 'mobile' euthanasia teams that could provide that "service" to people in their own homes if their own doctors wouldn't cooperate with their wishes.

The AP has a Statement of News Values and Principles, and it takes a strong strong, ethical stance on dealing with errors:

CORRECTIONS/CORRECTIVES:

Staffers must notify supervisory editors as soon as possible of errors or potential errors, whether in their work or that of a colleague. Every effort should be made to contact the staffer and his or her supervisor before a correction is moved.

When we're wrong, we must say so as soon as possible. When we make a correction in the current cycle, we point out the error and its fix in the editor's note. A correction must always be labeled a correction in the editor's note. We do not use euphemisms such as "recasts," "fixes," "clarifies" or "changes" when correcting a factual error.

A corrective corrects a mistake from a previous cycle. The AP asks papers or broadcasters that used the erroneous information to use the corrective, too.

For corrections on live, online stories, we overwrite the previous version. We send separate corrective stories online as warranted.

Great statement.  The trouble is, it's only as good if the organization actually follows the stated value and doesn't just treat it as ethical windowdressing.  The latter seems to the case at the AP.  First of all, I had to go through at least four different people before I got someone who gave me an email address for the chief of European desk at the AP.  I didn't catch the name, but the email address was amax@ap.org.

Here is part of the email I sent to the email recipient I was given by the AP here in the US:

Dear bureau chief:

I was given this email address by someone at the international desk at the Associated Press in the United States.  I hope you are the appropriate recipient of this message.

My job entails tracking developments on euthanasia across the world and I am very familiar with the Dutch guidelines defining "eligibility."  Your story misreports the guidelines in two different ways.

In honesty, I have already written about this problem on my blog (it's not the first of this type with the AP).  I am including the URL and two excerpts from the blog that lays out the problems as well as document the inaccuracy of the info in the article:

After that, I included relevant sections excerpts of the blog entry, explaining that the description of "terminally ill" and "unbearable pain" were both incorrect in terms of Dutch guidelines for euthanasia.  And of course I included the links to the Dutch govt. sites that spell out the actual guidelines.

Since Friday, I have heard absolutely nothing from the Associated Press.  Nothing. That isn't unusual or unexpected - but they might as well take their noble statement of principles down if the principles don't really mean anything in practice.

Also on Friday, I contacted the editor of the Dutch News site.  I received a gracious email from the editor and the story was re-edited so that the description of the guidelines were accurate.  The story now includes a link to the govt. information on euthanasia guidelines as well.  Here's the revised paragraph:

Euthanasia is legal in the Netherlands under strict conditions. For example, the patient must 'suffering unbearably' and the doctor must be convinced the patient is making an informed choice. The opinion of a second doctor is also required.

For the Dutch euthanasia rules in English, click here

That was done quickly (although without acknowledging the prior error).  And they added info so readers could find more about the guidelines in Holland themselves.  I didn't see and statement about ethics or principles on the Dutch News site, so I guess they just believe that correcting their mistakes is simply good journalistic practice.

I can only assume - contrary to the public statement on "values and principles,"  that the AP does not share the same view of correcting their mistakes.  --Stephen Drake

New Move to Expand Euthanasia in the Netherlands - Associated Press and DutchNews.nl Misrepresent Dutch Practice

It's hardly news when word comes out from the Netherlands that either the government, medical professionals or some private organization are seeking to expand the scope of the euthanasia laws.  After all, the consistent trend in the Netherlands has been to expand the practices of euthanasia and assisted suicide by expanding eligibility criteria, as we've written about here, here and here.

It's also not unusual for the newswire reporters to disseminate articles on assisted suicide, euthanasia, and the Netherlands that are just factually wrong - often egregiously.  The Associated Press, in spite of having a code of journalistic ethics it claims to adhere to, is one of the most consistent offenders.  The AP, in fact, went so far as to conduct a poll on Kevorkian and assisted suicide that was factually incorrect, corrupting the validity of the poll responses.  The AP then used its own flawed poll as news that they themselves covered, acting as both newsmaker and reporter - an unacknowledged conflict of interest if ever there was one.

Well, there's a new story out of the Netherlands and - as I said - it's really quite unremarkable that a group is trying to expand the practice of euthanasia.  But the coverage so far actually is quite remarkable in that I haven't read one news account that describes the so-called "strict guidelines" for euthanasia eligibility in the Netherlands accurately.  And one of those news sources is actually quite disturbing.

First here's the intro to the news from the Associated Press, titled Dutch group proposes 'mobile' teams:

AMSTERDAM (AP) — The main Dutch euthanasia advocacy group says it supports creating "mobile" euthanasia teams of doctors for terminally ill patients who want to die in their own homes, rather than in a hospital.

The Netherlands legalized euthanasia in 2001 in cases where patients are suffering unbearable pain due to illness with no hope of recovery.

(The italics above were added for emphasis.)
A careful reader might notice that the two descriptions of "patients" given in the first and second sentences don't match.  Anyone who is actually familiar with the euthanasia eligibility criteria in the Netherlands will know that neither description is correct.  Some of the media sites this appeared on included the Washington Post, Huffington Post, and cbsnews.com.

Did no one notice that one sentence stated that it's terminally ill people who can get euthanasia while the other sentence asserts that "patients who are suffering unbearable pain due to illness with no hope of recovery" qualify for euthanasia?

As I said, neither definition is correct - and I'll provide that definition with an authoritative source at the end.

What really surprised me about this is that when I did my search, what I found  - for once - the AP reporter who wrote this didn't generate the misinformation on his or her own (or lift it from previous erroneous AP articles).

This time at least some of the misinformation was generated by a Dutch news source.  News sources in the Netherlands tend to be biased - naturally - in favor of the euthanasia practices in that country, but are generally accurate when describing the "strict guidelines" and eligibility criteria.

Not this time.  Here is how eligibility is described in the DutchNews.nl article titled Voluntary euthanasia group plans to set up 'help to die' teams:

Euthanasia is legal in the Netherlands under strict conditions. For example, the patient must be suffering unbearable pain and the doctor must be convinced the patient is making an informed choice. The opinion of a second doctor is also required.  (Emphasis added.)

In fact, there is no requirement that a person be in actual pain to be able to be "helped" with euthanasia.  All that is required is that they have "unbearable suffering" - a broad, hard-to-define and very subjective term that has fueled the expansion of euthanasia practice in that country.

Don't take my word for it.  You can download a pdf document from this site on the Dutch Ministry of Health, Welfare and Sport that spells out the rules. I lack the ability to cut and paste content from a pdf document to this blog, but here's a summary from a different section of the same Ministry that summarizes the guidelines:

The greatest care has been taken to regulate care for patients who are suffering unbearably with no prospect of improvement. Euthanasia may only be carried out at the explicit request of the patient. 

Neither this summary or the longer version in the pdf document linked above mention "pain" or "terminal" as necessary to "qualify" for euthanasia.

Maybe it's simple laziness and incompetence (that explains a lot of the lousy reporting in the US) or maybe this particular Dutch news organization just figured if the AP and other news organizations insist on misrepresenting euthanasia in the Netherlands, they'd just play along for consistency's sake.

I plan on sending a link and copy of this blog entry to both the AP and to DutchNews.nl; experience tells me that there'll be no reply from the AP.  I wonder if DutchNews.nl will follow suit on that as well.  --Stephen Drake

Georgia Disability Activists at Supreme Court Hearing on Assisted Suicide - Press Coverage and More

The Georgia disability rights activists that attended yesterday's hearing on the Final Exit Network's (FEN) challenge to that state's assisted suicide law were included in some of the major media coverage.  First, from wbstv.com (channel 2) in Atlanta, there's a brief interview with disability activist Elizabeth Hune, alongside fellow activists Zan Thornton and Rebecca Ramage-Tuttle.  Here's the link for the segment titled "Supreme Court takes up assisted suicide law." Hune's remarks are at the end of the 2 minute news segment.

The Atlanta Journal-Constitution also published a story that included statements from Georgia disability activists, in an article titled "Final Exit Network faces state's highest court."  The remarks from Zan Thornton and Rebecca Ramage-Tuttle are at the end of the article:

Outside the federal courthouse, a small cadre of disability rights activists voiced concerns about the Final Exit Network and legalized assisted suicide.

Becky Ramage Tuttle, who suffers from spina bifida, said some people are too willing to help disabled people end their lives, because they are often viewed as less valuable to society.

Disability rights activist Zan Thornton noted that people sometimes say they'd rather be dead than disabled. She asked rhetorically, "How can they get help with suicide, but not for depression or pain relief?" She said she believes many people who contemplate suicide are suffering from inadequate medical care.

Finally, on Monday morning the Statewide Independent Living Council of Georgia posted the text of an op-ed written by disability rights activist Eleanor Smith:

Disability rights activists from Not Dead Yet of Georgia, Georgia ADAPT and Disabled Queers in Action are urging the state Supreme Court to uphold the prosecution of members of the Final Exit Network. Below is an op-ed submitted to the AJC by activist, Eleanor Smith – member of Not Dead Yet of Georgia. Since its submission, other advocates and disability organizations have signed on to the letter.

Equal Rights Includes Equal Suicide Prevention

As a disability rights activist, I see many people struggle every day to obtain the basic essentials to live and participate in the community. Because of many economic and attitudinal barriers thrown in people’s way, it’s not unusual for members of our community to experience at least brief periods of despair over what can seem like a never ending struggle.

I am very concerned over the “assistance” that members of the Final Exit Network (FEN) are eager to give to old, ill or disabled people who want to commit suicide. Young, healthy people sometimes feel suicidal, and in those cases law– and society as a whole –rightly step in strongly for prevention. But FEN singles out disabled people as candidates for active help to kill themselves.

One of the charges against FEN involves tampering with the scene of a suicide to pass it off as a natural death.

Also to consider is the troublesome report by an undercover GBI agent. The agent stated that one of the defendants, who had posed as a prospective FEN client, informed him that part of the “help” offered would involve holding his hands down to make sure he didn’t “inadvertently” rip the helium-filled bag off. It’s hard to believe that none of the roughly 200 FEN claims to have helped commit suicide didn’t change their mind at the last minute. The histories of at least two of the members of the FEN Advisory Board raise alarms. Faye Girsh and Ruth von Fuchs both have publicly advocated removing or lessening the legal consequences for family members who kill a disabled child or a cognitively disabled adult such as a person with dementia– provided that the killer claimed to have acted out of compassion.

What guarantees do any of us have that FEN members haven’t aided and abetted outright murders? The helium apparatus could easily be used to kill an elderly relative or child with cognitive disabilities, with no sign of struggle.

We ask the Georgia Supreme Court: Please proceed with prosecution for tampering with the scene of death. And please uphold Georgia’s ban on assisted suicide so that predators have some checks on their behavior.

Eleanor Smith – Not Dead Yet of Georgia
Patricia Puckett – Not Dead Yet of Georgia
Rebecca Ramage-Tuttle – Not Dead Yet of Georgia
Linda Pogue – Georgia ADAPT
Ryan Mercer
Vivian Teel – ADAPT
Georgia Advocacy Office
Harriet Harris – Circle of Support, Inc.
The Arc of Georgia
Greg Harry
Georgia ADAPT
Not Dead Yet of Georgia

National NDY is very grateful to all of the activists who mobilized quickly on only a few days notice - Rebecca Ramage-Tuttle, Pat Puckett, Eleanor Smith, Zan Thornton, Linda Pogue, Elizabeth Hune - and any others whose names I might have accidentally left off.  (If I did - drop me a note at my email address - sndrake at aol.com - and I will rectify the error ASAP.)

Georgia Disability Activists to Attend Arguments at GA Supreme Court Hearing on Final Exit Network

Today, Nov. 7, 2011, the Georgia Supreme Court will hear arguments on the challenge to Georgia's assisted suicide law filed by members of the Final Exit Network.  The group claims that the law does not actually prohibit assisted suicide but does violate the First Amendment right to free speech.

Three disability rights groups from Georgia will be attending the hearing today, and handing out informational flyers on the activities of the Final Exit Network and why the group needs to be stopped.

The double-sided one page flyer is reproduced below.  NDY's press release announcing the presence of disability rights activists at the court today can be found at:

Disability Activists Urge Georgia Supreme Court 

to Uphold Prosecution of Final Exit Network

The informational flyer is below:

DISABILITY RIGHTS GROUPS URGE

GEORGIA SUPREME COURT TO

UPHOLD PROSECUTION OF FINAL EXIT NETWORK

EQUAL RIGHTS INCLUDES

EQUAL SUICIDE PREVENTION

Disability rights activists from:

Not Dead Yet of Georgia

Georgia ADAPT and

Disabled Queers in Action

are attending oral argument in the Georgia Supreme Court

on Monday, November 7 at 10:00 a.m.

• Disability activists are urging the state Supreme Court to uphold the prosecution of members of Final Exit Network.

• Many people struggle every day to get the basic essentials to live and participate in the community. Attitudes based on prejudice are thrown in people's way, so people sometimes feel despair over the never ending struggle for access and acceptance.

• When young, healthy, nondisabled people say they want to commit suicide, society says their suicide would be a tragedy and tries to prevent it.

• But Final Exit Network (FEN) members respond to old, ill and disabled people who want to commit suicide by agreeing and assisting them to do it.

• That’s discrimination against people who are old, ill or disabled.

• An undercover GBI agent, who posed as an FEN client wanting to commit suicide, said he was informed by one of the defendants that part of their “help” would involve holding his hands down to make sure he didn't “inadvertently” rip off the helium-filled bag that would cause his death. There would be no chance to change his mind at the last minute.

Equal rights includes equal suicide prevention!

PAGE 2

Final Exit Network:

Myths vs. Realities

MYTH: The Final Exit Network (FEN) only “assists” the suicides of people who are terminally ill. 
REALITY: John Celmer, whose suspicious death sparked an investigation into FEN, was reported to be cancer-free in the coroner’s report. Under the “Who we serve” section of its website, FEN states that it will serve persons “who are suffering from intolerable medical circumstances and want to end their lives. Those conditions include Cancer, ALS (Lou Gehrig’s Disease), Alzheimer’s, Huntington’s, Multiple Sclerosis, Muscular Dystrophy, Emphysema, Congestive Heart Failure, Stroke, AIDS, and many other lesser-known but serious ailments.” (From FEN  website)

MYTH: FEN “Exit Guides” only provide “counseling,” not “assistance.” 
REALITY: Legal authorities charge that part of the group’s assistance entails cleaning up the site of an allege suicide to make it look like a natural death. Moreover, the Georgia Bureau of Investigation (GBI) claims that, during the sting operation it used with FEN, the agent posing as a cancer victim was told that the “exit guide” would hold his hands down after the helium-filled bag went over his head. FEN claims that this is to prevent flailing movements from accidentally dislodging the bag, but it would also prevent the removal of the bag by a person who had changed his or her mind.

 MYTH: Those that FEN “helps” are carefully screened. 
REALITY: The GBI agent in the sting operation that sparked the multi-state investigation posed as a cancer patient. He says that FEN never asked for his medical records. John Celmer, of Georgia, was cancer-free at death.

For more information contact:

• Rebecca Ramage-Tuttle 404-513-0788 rrtuttle@silcga.org
• Stephen Drake 708-420-0539 sndrake@aol.com

RELEASE: Disabililty Rights Activists from NDY and National Council on Disability Featured on Dr. Oz Assisted Suicide Show

 Link: http://www.prweb.com/releases/2011/11/prweb8929655.htm

Disability Rights Activists from Not Dead Yet and National Council on Disability Featured in Dr. Oz Segment on Assisted Suicide

Members of Not Dead Yet and National Council on Disability were featured in a Dr. Oz segment on assisted suicide. Members expressed opposition to assisted suicide, but overall the segment was biased in favor of the practice. 

Rochester, NY (PRWEB) November 03, 2011 

On November 1st the syndicated Dr. Oz Show broadcast a segment addressing the topic of assisted suicide. Several members of Not Dead Yet, a national disability rights group, and Ari Ne’eman, a presidentially appointed member of the National Council on Disability, attended the taping of the program by invitation. Ne’eman is also head of the Autistic Self Advocacy Network.

Both Not Dead Yet and the National Council on Disability, as well as several other national disability organizations, oppose legalization of assisted suicide. The groups are concerned that assisted suicide poses a danger to people with significant disabilities, whether or not their conditions are classified as terminal.

The broadcast opened with Montel Williams, who has multiple sclerosis (MS), describing his experiences of pain with MS, his previous suicidal feelings, and his current support for laws allowing assisted suicide.

During the program’s two-hour taping, Danny Robert, a man with multiple sclerosis who uses a ventilator, was identified as a member of Not Dead Yet and given the opportunity to speak from the audience. Robert spoke about his initial marriage break up and wish to die, and his concern that he would have died and missed his current life and new relationship if assisted suicide were legal.

After attending the taping, but prior to the broadcast, Robert wrote a guest Not Dead Yet blog about the experience. In part, he described his observations about a disabled woman featured in the segment:

[Excerpt] Dr. Oz introduced Dana, an African American woman in her late 40s or early 50s with ALS. . . . She sat in a manual chair, somewhat reclined, wearing a ventilator mask. A video played on the big screens, showing Dana before tragedy hit, healthy, strong, athletic... (very exploitative). Then the ventilator mask came off (the ventilator alarmed briefly) and Dana began to speak. She said she had been living with the progression of ALS for 8 years and she was tired. She hated having to depend on others for her care and she couldn't take it anymore. She said she was depressed, lonely, had no friends left and she wanted to die. Nadina [my life partner] and I looked at each other and said “that's why she wants to die.”

[Excerpt] Dr. Oz asked Dana's son how it felt to live with his mom. He said it was sad and that, though he didn't really want her to die, he also didn't want her to suffer anymore. Dana's daughter said: "It's heart-breaking, unbearable to watch her suffer. She's had enough." Dana's sister, who has her health care proxy, reiterated: "She can't take it anymore. She's suffered enough." It was obvious to us (but I guess to no one else) that the family had “had enough.”

Perhaps unintentionally, the episode demonstrated one of the significant reasons that Not Dead Yet opposes assisted suicide. “I really felt that Dana’s loneliness and feelings of being a burden on her family were at the heart of her apparent support for assisted suicide,” said Robert. “When Dr. Byock, another guest on the show, pointed out that she could just refuse antibiotics the next time she got pneumonia, Dr. Oz asked her directly if she would do that. Dana replied, ‘That’s a good question.’ When I looked at her expressions as her family spoke, I saw and heard a cry for help. But most of the Dr. Oz audience didn’t seem to hear her ambivalence and her plea. They just applauded her wish to die.”

Dr. Oz stated that he supports assisted suicide at the beginning of the taping and at the end of the broadcast. The producers included extensive footage and interview time with the disabled individual and family supporting assisted suicide, which was not comparably sought or obtained from a disabled individual and family opposing assisted suicide.

Ne’eman was also given the opportunity to speak during the two-hour taping. His comments were not included in the final one hour broadcast, but were included in two online video segments (part 1, part 2). Ne'eman was also invited to submit a written article on the topic which is featured on the program’s website.

# # #

 

Disability Activists, Assisted Suicide and the Land of Oz

Yesterday - November 1 - the anticipated/dreaded Dr. Oz show on assisted suicide aired in most places, although syndicated shows such as Dr. Oz often play out on different dates in different locations. Disability activists Nadina LaSpina, Danny Robert, Ari Ne'eman, Julie Maury, Hope Derogatis and Bill Peace were all in the audience.  Danny Robert and Ari Ne'eman got to speak.  While Bill didn't, there are several times you can see him clearly - looking generally pissed off at the tone and bias of the show.

Every one of them deserves a ruby slipper award for enduring this visit to the Land of (Dr.) Oz.

Ari Ne'eman was invited to write and post an essay on the Dr. Oz site.  It's titled Death on Demand: Risks and Responsibilities.  Here's an excerpt:

There are many critical civil rights issues facing Americans with disabilities and chronic health conditions – but the right to die is not one of them. Over the last 15 years, Americans have been engaged in an intensely controversial debate as to whether or not states should legalize assisted suicide for individuals with significant disabilities and terminal illnesses.

These laws – often promoted as “Death With Dignity” – appear on the surface to assist individuals expected to die within six months to request a lethal prescription from their physician. To the uninformed, these laws claim to enhance autonomy to a small number of individuals already at the end of their lives. Yet, as we’ve seen from years of experience where physician-assisted suicide has become legal, the reality is quite different. Far from assuring autonomy, the legalization of physician-assisted suicide has served to diminish true choice by creating an environment in which individuals denied access to necessary health care are made to feel like suicide is their preferred option. By advocating for so-called death with dignity, rather than the support and services people need to live, proponents of such laws bolster a system already denying dignity to hundreds of thousands of Americans with disabilities and chronic health conditions.

There's a section for comments directly following the essay.  It would be great to have even more disability rights advocates chime in.

You can also watch video - cut up into very small pieces - of the show.  The Oz site isn't friendly to embeds for video, so I can only provide links:

Do You Have the Right to Die? Pt. 1 - features Danny Robert after a short intro by Dr. Oz.  (In the opening shot, the guy who is to (your) the left of Dr. Oz wearing glasses and a maroon-ish shirt is Bill Peace.  Watch for him in other video segments.)

Ari Ne'eman challenges Montel Williams directly starting near the end of "Do You Have the Right to Die?  Audience Q & A, Pt 1" and continuing at the beginning of  "Do You Have the Right to Die?  Audience Q & A, Pt 2".

As expected, the show was very biased.  The show opened with a woman who has a neuromuscular condition who says she's tired of living with it and has family with her to support her - support her when it comes to dying, anyway.  Of all the people on the stage, Montel Williams is probably given the most time, because, well, this is entertainment and he's the biggest celebrity there beside Dr. Oz.  Williams manages to disparage talk of the "slippery slope" while at the same time advocating for just such a slope.  He's fluent in the stats concerning Oregon and the eligibility criteria.  Williams is clear, though, that he wants to end it all when he feels he is ready - no mention of terminality.  And, at the end, Oz the ringmaster of the show announces that he favors assisted suicide - with unrelieved suffering as his criteria.  So good old Oz wants public policy to slide down a slope farther down the hill than it supposedly has in Oregon and Washington.  The audience - from what we're told by the folks who were there - seemed to be pretty stacked with people in favor of assisted suicide and not too picky about if the eligibility was "suffering," "dying," or "disabled."

And by a strange coincidence, that put them in sync with both Montel Williams and Dr. Oz.

We are extremely grateful to all of our fellow activists who trekked in the downpour that day to get to the show.  Their presence and advocacy were probably the major factors preventing the show from being a total disaster.

I understand that, like Dorothy, everyone was extremely happy to finally escape from the Land of (Dr.) Oz.  --Stephen Drake