Chicago NDY Visits Final Exit Network’s Annual Meeting

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eight disability activists holding signs and standing by banner that reads - not dead yet - we want to live!(photo at right: eight disability activists in front of hotel, holding signs and surrounding bright red banner that reads: NOT DEAD YET – We Want to Live!)

Last Saturday, June 6, the Final Exit Network held its annual meeting at the Sheraton Four Points Hotel in Schiller Park, IL, near Chicago’s O’Hare Airport.

Nine disability activists gave up their Saturday, sitting and standing in the chilly drizzle that day. Our numbers were down for 3 major reasons:

  1. There wasn’t much advance warning for the protest, due to fairly short notice regarding the meeting itself;
  2. Many disability activists were at the conference of NCIL – National Council on Independent Living, in Washington, D.C.;
  3. Paratransit rides are difficult to get on weekends and the location was a little out of the way.

The numbers were more than enough to do what we set out to do – give a “reality check” to the “assisted suicide ring” aka Final Exit Network (FEN).

Flyer for the event below, but first, some points of interest and some thanks:

  • Both Derek Humphry and Faye Girsh came out to talk and gawk. Humphry is the founder of the Hemlock Society. Girsh is a former director of the Hemlock Society and was the subject of a prior blog post. Both are members of the Advisory Board of the Final Exit Network;
  • Current FEN president Jerry Dincin came out and said our flyer was full of lies, but didn’t specify a single one;
  • Bob Levine, who has posted a comment here, talked to us as he was leaving – odd, since the meeting was just beginning when he departed. Probably some interesting internal politics there. He practically ran away when asked if he wanted to comment on Jan Van Voorhis, a woman in Arizona who allegedly died with the “help” of FEN. Van Voorhis had no serious physical health issues, but a long history with depression and other emotional issues.

It was pretty clear that they did not expect anyone to show up from outside – these folks somehow believe that email lists are actually private. No press showed up – it’s hard to get Chicago media to come to a protest in a large city like that – and it looks like FEN hadn’t done any press work of its own.

Before going to the flyer, Diane Coleman and I want to thank Horacio Esparza, Larry Biondi, Mark Karner, Sam Knight, Clark Craig, Sophia Craig and George Terzakis for all of their help and support. All of these folks are associated with Progress Center for Independent Living, which was NDY’s home base until last July, when we moved to Rochester, NY.

Pictures of the action can be seen on my public facebook photo album. All of the pictures of the protest that are up right now were taken by George Terzakis. Several of the pictures I will add tomorrow were taken by him as well.

Without further ado, here is the flyer we handed out in front of the hotel before and during FEN’s meeting:

Final Exit Network: Myths vs. Reality

Due to a fairly extensive amount of print and broadcast coverage of the group, most people might think they have a good idea of what the Final Exit Network (FEN) does, who it “helps,” how it helps, and where they are active. Unfortunately, due to a lot of sloppy reportage and some outright lying by some FEN members and supporters, much of what people “know” about FEN falls into the category of mythology.

MYTH: The Final Exit Network only “assists” the suicides of people who are terminally ill.

REALITY: That’s an easy mistake to make. Time erroneously reported that FEN’s eligibility was limited to “terminally ill” people. Founding president Earl Wettstein made the claim in an op-ed in the Arizona Daily Star. In fact, it’s shown up in a lot of the reporting. That myth breaks down under even casual inspection. John Celmer, whose suspicious death sparked an investigation into FEN, was reported to be cancer-free in the coroner’s report. Arrests have been made in the death of Jan Van Voorhis, a woman with minor physical ailments but a long history of psychiatric issues. In fact, you don’t have to take our word for this at all. Under the “Who we serve” section of its website, FEN lists a number of nonterminal conditions that would make a person “eligible” the group’s “assistance. Just to make sure nothing is left to doubt, the site adds:

Others who are facing protracted, losing battles with cancer, stroke, congestive heart failure, emphysema and other incurable conditions yearn for dignified withdrawal rather than clinging desperately to every breath.
Many of these individuals are not being served. Final Exit Network will serve these and many others like them.

MYTH: FEN “Exit Guides” only provide “counseling,” not “assistance.”

REALITY: That is exactly what some of the spokespersons for Final Exit Network are claiming now. However, 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. More, 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 and aborting the suicide. They are amazingly confident that this has never somehow crossed the line from “assistance” or “counseling” to homicide – by preventing 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. Jan Van Voorhis, an alleged recipient of FEN “help,” had no serious medical problems at all.

MYTH: If every state had assisted suicide laws similar to those in Washington state or Oregon, there would be no “need” for the Final Exit Network.

REALITY: That claim is certainly being circulated far and wide. Timothy Quill of the Death with Dignity National Center has made that claim. So has Barbara Coombs Lee, Executive Director of Compassion & Choices. Even FEN members have advanced the claim. Earl Wettstein (Arizona) and John Fanning (Colorado) made the claim that cancer-free John Celmer wouldn’t have “needed” FEN if he’d lived in Oregon – claims made in separate but strikingly similar op-eds. Claims like this are a lie. And the best source of verification is the FEN press release issued on November 5, 2008, celebrating the passage of I-1000, which legalized assisted suicide for people who are terminally ill in Washington State. Excerpt:

Although, like Oregon’s “Death with Dignity Act,” I-1000 gives doctors the authority to prescribe a lethal dose of medications to terminally ill individuals under strict controls, it condemns to continued suffering as many as 40% of those who desperately want to end their life because of intolerable suffering but cannot under the law because their illness is not diagnosed as “terminal”.

“Unfortunately,” said Goodwin, “many patients do not meet I-1000’s strict criteria. Individuals with neurological illnesses such as Parkinson’s disease, Multiple Sclerosis, Muscular Dystrophy, Amyotrophic Lateral Sclerosis (Lou Gehrig’s disease) and Alzheimer’s disease often lose the reason and will to live long before their disease qualifies as ‘terminal’.” Goodwin adds, “For these individuals, neither I-1000 nor the Oregon law go far enough. “That is why Final Exit Network pledges, until laws protect the right of every adult to a peaceful, dignified death, Final Exit Network will be there to support those who need relief from their suffering today!”

“The Network’s Exit Guide Program is available nationwide,” Goodwin said. “With the Network’s compassionate guidance and support, physically and mentally competent adults in all fifty states are free to exercise their last human right — the right to a peaceful, dignified death. “Final Exit Network is the only organization in the United States that will support individuals who are not “terminally ill” – 6 months or less to live – to hasten their deaths. No other organization in the US makes this commitment,” said Goodwin.

Please note – that statement says very clearly that they will help, anyone, anywhere who “needs” their help – including Washington State and Oregon.

WHY WE CARE: People with disabilities are faced with multiple hardships in our society. Discrimination in education and employment lead to wide-scale impoverishment. The multitude of physical and attitudinal barriers that still prevent full inclusion of people with disabilities into the life of society leaves many isolated and in despair. This despair is remediable – calling for time, money and resources – to help people out of the ditch. People with disabilities deserve the same suicide prevention as everybody else. Assisted suicide, giving people a shove when they look into the abyss, takes no time, money or effort at all – and it’s the final abandonment, the ultimate discrimination.

Thanks again to everyone who made this happen! We are grateful to all of you. –Stephen Drake

Is a Coalition Possible? – The Jury is Still Out

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Last week, Diane Coleman and I attended and participated in the Second International Symposium on Euthanasia and Assisted Suicide, put on by the Euthanasia Prevention Coalition (EPC). We were optimistic about attending based on our experiences with Alex Schadenberg, E.D. of EPC. We attended an event of EPC last year in Winnipeg with members of the Canadian disability rights community which focused on the issues of assisted suicide and euthanasia – and stayed focused across presenters.

Last week’s event was a disappointment and discouraging in terms of the feasibility of a coalition. There were simply too many representatives of organizations (Christian/prolife/conservative) that couldn’t resist bringing in other parts of their agenda.

What made this even more disappointing was that these presenters, who couldn’t stick to the shared agenda, did so knowing two things:

  1. The successful coalition in the United Kingdom: Dr. Peter Saunders, founder of the Care Not Killing Alliance in the U.K. described how their successful coalition worked. Everyone in the alliance stays on message. The major spokespersons of the Alliance are from the political left and the disability community. The E.D. of the coalition is an atheist, pro-choice, left-wing member of Parliament. They’ve managed to hold the line on legislation in the U.K. in the face of sympathetic coverage of assisted suicide and a well-funded pro-euthanasia movement.

  2. There were opponents in the audience. At least two attendees were from the other side – the pro-euthanasia movement. Their task, naturally, was to gather information to help themselves in their own advocacy.

For me, things came to a head on the first day when a representative of the LaRouchePAC stepped up to the audience question-and-answer microphone. He read a piece of crap he called “research” that labeled Obama’s health care plan (what we know so far) as a “Nazi plan.” To my disgust and horror, over half the audience broke out into applause over that.

I took Alex aside and told him that he had no idea what just happened and how bad it was. The LaRouchePAC is one of several entities attached to Lyndon LaRouche, conspiracy enthusiast. Pretty much no one of any political stripe who wants to be taken seriously becomes associated with the man or his group. (BTW, the guy from the PAC got in for free with a “media pass” – probably from his home printer, and then did the un-journalistic move of leaving promotional materials. He also didn’t ask any questions. Maybe this gives you an idea of the ethics – or lack thereof – in how they operate.)

Alex let me take the podium in response. I can’t remember everything I said, or the argument I had with the guy from the PAC. But I knew it wouldn’t be enough, especially with repeated exposure to material that had nothing to do with euthanasia and assisted suicide.

The next morning, after a brief intro of my own history – my birth and issues related to hydrocephalus growing up, I departed from my previously planned presentation, explaining that events of the past couple days had made it obvious that I needed to address serious threats to any participation by NDY in a coalition. The following is an attempt to construct my remarks from memory and notes. I am sure that parts of it are verbatim and that it doesn’t depart from the factual content. (If I get the DVD or transcript, I will no doubt find that I departed from the remarks as spoken in ways that make me sound more eloquent than I was.) For what they’re worth, here are my remarks, as best as I can recall:

“I think that a broad-based coalition is not only a good idea, it’s a necessary one. Having said that, I also have to say I’m not sure I’ll be back here. I signed on for the idea that we could all stay focused on assisted suicide and euthanasia. Yet I’ve been made to be associated with presentations that included discussions of stem cells, abortion and Roe v. Wade. I, too, have passions. I could have gone on a rant on the cost of George Bush’s war of choice in Iraq, which also dug our country into a hole budget-wise. Resulting draconian budget cuts in many states to support services for people with disabilities are a real issue – and I could have made a plausible argument for tying that to the issues we are supposed to be focusing on.

Most troubling was what occurred yesterday when someone came in from outside. Reading from a so-called “analysis,” an outsider came in here and presented a bunch of de-contextualized quotes and called it something like “Obama’s Nazi Health Care Plan.” And over half of you applauded. I don’t know why you applauded, but it’s clear none of you knew who or what you were applauding. I do – I read the so-called “analysis.” That “analysis” comes from a group that doesn’t deserve the dignity of being called “fringe” – the group has a history of latching onto one cause after another for the sole purpose of raising its own public profile and political clout.

I’d hate to think that it was the “Nazi” allegation you were applauding. It’s a comparison that discredits the person who invokes it – along with whatever cause or organization they’re associated with.

Please bear with me for a short story. For personal reasons, not religious, I find mezuzahs on the outer door frames of the house very comforting. Last year, Diane and I purchased a house. It has mezuzahs on every outer door frame. The previous owners were two people who met and married in the Warsaw Ghetto in Poland. Soon after, they were among the millions of Jews taken to Concentration camps. They ended up in different camps. Miraculously, both survived. Even more miraculously, they found each other again. They moved to the States, lived and raised children.

These were but two of the victims of the greatest crime of the 20th Century. Thinking on them, have a care when you invoke or applaud Nazi comparisons. When you invoke the systematic, routinized extermination of millions of men, women and children in response to vague fears about a health plan, you turn off and offend the majority of the public. It offends me. (And, btw, I feel the same way about the use of the term “fascism” by some critics of the Bush administration – and I wasn’t a fan of that administration by a long shot.)

I’d like this U.S. coalition to work, but I’m not convinced it will. There are people here I’ve worked with before and would like to again. But there’s also a track record of ignoring or rendering invisible the very people that so many groups are eager to “protect” and “speak for.” It happened in the Robert Wendland case, in the fight for Terri Schiavo’s life and in the debate over the film “Million Dollar Baby.” In each case, there was heavy involvement by disability groups – court briefs, op-eds, protests. But in each case, those voices were overrun by “culture warriors” with our “allies” as willing to pretend we didn’t exist as our opponents. You can’t blame it on a “liberal press” either – Fox News was as guilty as anyone else in terms of pretending we didn’t exist.

The outcome of that exclusion, of course, is harmful to the issue this conference is supposed to address. The American public remembers the Schiavo struggle as a chapter in the “culture wars.” And to the extent that we’re remembered at all, there’s a vague notion that we were “tools” of the religious right.

That also makes it harder for us to get organizations and activists to exert energy. “Why should we?” they say. All that work and no acknowledgment and little or no impact. That’s a reality of getting people with full plates to add one more thing.

So with that context, I repeat that I’m not sure that I will be back. What we bring to the table are disability activists and mainstream disability organizations. If they see a coalition dominated by groups bringing other political agendas into the discussion, they will be increasingly difficult to pull in.

Note: all of this occurred before the murder of Dr. George Tiller. Tiller was famous – or infamous – as one of the few doctors willing to openly provide late-term abortions. He was shot down while serving as an usher in church – a traditional place of sanctuary.

While most organizations opposing abortions have given what seem to be sincere statements of condemnation, there’s a glaring exception to that rule.

Yesterday, Randall Terry made the following remark regarding the murder of George Tiller:

“The point that must be emphasized over, and over, and over again: pro-life leaders and the pro-life movement are not responsible for George Tiller’s death. George Tiller was a mass-murderer and, horrifically, he reaped what he sowed.”

That is Randall Terry saying that basically, Tiller got what he deserved. Not that I ever doubted it, but it once again confirms what a violence-promoting piece of crap this man is. It’s also the reason Terri Schiavo was doomed when this vermin stepped up and treated the fight for her life as his personal show to stage-manage.

Until pro-lifers can shake the taint of this violence (loudly and permanently denouncing Randall Terry would be a good start), they’ll only succeed in chasing people to the other side when it comes to issues like assisted suicide and euthanasia.

That may seem unfair to pro-lifers who consistently and sincerely abhor violence. But, as Rita Marker said at the Symposium, there is a commandment she discovered that is very important to understand:

“Life ain’t fair. Get over it.”

And it ain’t fair that some of the players last week just couldn’t seem to grasp the importance of leaving their excess baggage at the door. But even if they don’t get over it, we will – even if that means doing our work outside of a coalition that has members who don’t care enough about the issues of assisted suicide and euthanasia to exercise the necessary discipline needed to win with an effective coalition. –Stephen Drake

NDY Discussed at “Bisexuality Across Cultures Event” – the Message AND the Messenger Matter!

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I was at a conference last week and will be writing about that later today. In the meantime, I wanted to share a few excerpts from Indybay.org, about a “Bisexuality Across Cultures” event held on May 27th.

Assisted suicide, euthanasia and NDY came up in this event. Here’s the intro:

The Bisexual Forum of San Diego County hosted an event May 27 called “Bisexuality Across Cultures” that highlighted self-identified Bisexuals from Europe, Mexico and the community of people with disabilities. They compared notes and found that Americans have a much more rigid concept of “sexual orientation” than people in other countries, and Bisexuals with disabilities face the disinclination of many Americans to believe that people with disabilities have sex lives at all. The speaker representing people with disabilities spoke of a “hierarchy of discrimination” in which people of color are more privileged than Queer people, who in turn are more privileged than people with disabilities, and also attacked so-called “assisted suicide” laws for devaluing the lives of people with disabilities.

Incredible quote from Bisexual Forum board member Jennifer Wrestle at the end of this particular part of her discussion of the “hierarchy of discrimination.”:

Restle discussed her own situation as a blind Bisexual woman and said there’s what she called “a hierarchy of discrimination,” in which some groups victimized by discrimination are nonetheless more socially privileged than others. According to Restle, racial and ethnic minorities are at the top of the hierarchy of discrimination; Lesbian, Gay, Bisexual and Transgender people are in the middle and people with disabilities are at the bottom. To prove her point, she noted that people frequently say they’d “rather be dead” than have to live with being disabled, “so in a way we’re even below dead people.” (emphasis added.)

Finally, the end of the article is devoted to Restle’s comments on assisted suicide, euthanasia and NDY:

The conversation took an unusual turn when Restle was asked about the suicide rate among Queer disabled people — and her answer tapped into the whole controversy over euthanasia and assisted suicide. This debate is usually presented similarly to the contest over abortion — between support for people’s “right to choose” and opposition based on a “pro-life” religious or moral commitment — but, as Restle explained, many people with disabilities fear the legalization of assisted suicide because “a lot of people encourage us to kill ourselves.” She mentioned that within the disability community there’s an organization called Not Dead Yet, which mobilizes against laws allowing assisted suicide because they fear such laws will be used to pressure people with disabilities into believing they have, not a “right,” but a duty to die to spare taxpayers and society as a whole the costs of taking care of them.

I have no doubt that Restle was able to make a dent in the assumptions and biases in her audience that assisted suicide and euthanasia are thornier issues than simply matters of “choice” and “compassion.” To the extent that she reached people in her audience, it was because she was the right messenger. She is a member of the LGBT community talking to an audience from that same shared community. Who else would they listen to? A member of an organization that poured money into Proposition 8 to end the right for Gays and Lesbians to marry in California? A straight member of the disability community?

Nope. To the extent that Restle’s message reached people it was because she was the right messenger carrying this particular message to this particular audience.

And btw, I urge people to read the entire article. The panel participants had some interesting insights to share about cultural variations in how bisexuality is viewed. Restle had more comments about the hierarchy of discrimination in addition to what I’ve shared here.
–Stephen Drake

Catching up #2: Ari Ne’eman in HuffPo: Health Care Reform and the Disability Community

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Ari Ne’eman has a long essay on the Huffington Post on health care reform and the concerns of the disability community. Ari is the founding President of the Autistic Self-Advocacy Network (ASAN). He is also – full disclosure alert – a friend and colleague of mine – although we have yet to meet face-to-face.

The following are excerpts from his essay, “Health Care Reform and the Disability Community“:

As we speak, Congress is deliberating on vast and important changes to the system of health care in the United States. This issue is one of crucial importance to all Americans, but of particular interest to those Americans who interact with public health insurance more than almost any other group — people with disabilities. Ranging from veterans with disabilities who receive care through the Veteran’s Administration health care system to the many low-income disabled adults who are eligible for Medicaid, the disability community interacts with the public health care infrastructure in the United States in a wide variety of ways. As we consider how to reform, streamline and expand that infrastructure through any of a variety of means, it is incumbent upon us to remember the key issues for making sure that health care reform doesn’t leave disabled adults and youth behind.

He goes on to list four key issues in health care reform that relate to the disability community. Here is part of item 4:

Stop discrimination in the provision of care: Too often, people with disabilities are denied necessary — sometimes even life-saving — medical care because of assumptions that non-disabled people make about our quality of life. For many people, disability is still considered a fate worse than death instead of a part of the human experience. As a result, it has been disabled people who are pushed over the side first when resources become scarce. As recently as last year, a task force including doctors from the Centers for Disease Control and Prevention, the Department of Homeland Security and the Department of Health and Human Services issued guidelines stating that, in the event of a flu pandemic or similar emergency, people with intellectual disabilities as well as those with chronic health conditions may be excluded from care.

The eugenic impulse that views people with disabilities as “burdens on society” or “life unworthy of life” is still regrettably alive and well within our health care system. Just last week, Disability Rights Wisconsin, the state’s protection and advocacy system for people with disabilities, filed suit against the University of Wisconsin hospital as a result of their decision to withhold medication and basic nourishment from two patients with intellectual disabilities who had pneumonia. These individuals were not in a persistent vegetative state, were not dying and one even asked for food. The decision to refuse anti-biotics, nutrition and fluids for a treatable medical condition was made by hospital officials based on their determination of “quality of life” for the individuals in question. Health care reform must include non-discrimination protections that prevent these types of atrocities by health care providers.

You can read the rest of his analysis here. –Stephen Drake

Catching up #1: Chris Hilderbrant on Max Baucus and “Palatable” Health Care Reform

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After a few days away, I’m playing catch-up again. So I have a few blog entries to refer people to. There is some excellent writing happening in our community.

First up is a post by Chris Hilderbrant. In the interest of full disclosure, Chris is the Director of Advocacy at the Center for Disability Rights (CDR). CDR provides material support to NDY – by providing me with an office, phone, access to internet and other important things that are essential to NDY’s work.

The latest blog entry by Chris on the CDR blog is directly relevant to NDY and should cause concern about what things are – and aren’t – being targeted as priorities in the discussions on healthcare reform. Here are excerpts from “Chairman Baucus, what’s on your political palate?“:

For three hours Senate Finance Committee Chairman Max Baucus led discussions on how to reform health care and how to pay for that reform. Single-payer health insurance advocates stood and walked out in silent protest. Others shouted to interrupt the opening remarks of Chairman Baucus (some later re-entered the room in different clothes!). Chairman Baucus pleaded with the remaining audience members to allow the hearing on healthcare reform to proceed. He indicated that he’d meet with people personally rather than have further interruptions of the hearing. As an ADAPT members with a certain prowess for interrupting bureaucratic proceedings, I had been considering a one person protest for the Community Choice Act… but, now I’ll be contacting his office to set up the meeting he promised me.

For three hours, a variety of Senators and healthcare experts discussed options. And for three hours, not one person said anything about long term services and supports (long term care, by another name).

Sadly, the closest that the hearing came to a mention of long term services and supports (LTSS) was when they engaged in a discussion of “the high cost of dying.”

Yup, the Senate, in all its gentle wisdom, is showing more interest in how much it costs for seniors and others to stay alive at the very end than they have shown in how seniors and people with disabilities live for the DECADES before we get around to dying.

There’s more. All of it worth reading. –Stephen Drake