Final Exit Network: Investigation Expanding and Members Expounding (or Obscuring)

The apparent suicide by Phyllis Hixson, in Athens County OH, is being investigated for possible involvement by members of the Final Exit Network (FEN).

The group claims that no one from FEN was present. But that doesn't matter to Hixson's younger sister, Jerri Rosson:

She blames the Final Exit Network for providing the plans and support, if not an in-person presence, behind her sister's death.

Rosson said her sister never mentioned a death wish. She hadn't heard of the Final Exit Network until investigators arrived at her sister's home.

"I think it's wrong, totally wrong. We all have a purpose in life, and it's not up to us to decide when that purpose is fulfilled," Rosson said yesterday while tending to funeral arrangements.

"She had a lot of good to give. She was not done. I feel she was rushed into it."

Meanwhile, Dr. Larry Egbert is out on the road, doing his best to distort and misrepresent the mission of FEN:

"What would you do if your dog is dying and riddled with cancer? You'd take him to the veterinarian and the vet would put him down," said Dr. Larry Egbert "What would you do if your father was dying of the same kind of horrible cancer? Nothing much, so your father gets to suffer and your dog doesn't?"

Egbert has been charged in connection to his alleged role in the death of John Celmer, a man who was cancer-free at the time of his death, but distressed about his physical appearance.

Apparently, Egbert thinks it's best to downplay the wide-open criteria that FEN used to brag about.

Obviously, Egbert and his FEN pals don't have much faith in their position - or they wouldn't feel compelled to lie about it. --Stephen Drake

Terrie and Bill - My Own Troubled Thoughts

Before I get into sharing my thoughts on the two previous blog entries, I wanted to share a little of the backstory that went into the inclusion of Terrie Lincoln's story on the "How We Die" website.

Last month, I was contacted by Hannah Rosenzweig, who is working on soliciting stories for the "How We Die" series. You can read a lot about the content and goals of the team by reading this section of the site.

Hannah's purpose in contacting us was to look for "end of life" or experiences about people with disabilities facing the "end of life." I gave her a shorthand version of the complicated nature of the term "end of life," which I've written about before. Like most people who use the term, she hadn't thought about just how many diverse situations that innocuous term actually covered.

This provided an opening to pitch Terrie Lincoln's story to Hannah. I gave her a brief outline of Terrie's story as I knew it. She definitely found it compelling, but wasn't sure what to do with it. I think she became hooked when I pointed out that if Terrie's family had caved into the pressure to take her off the ventilator, we would now say that the family had made an "end of life decision."

The rest was a matter of getting Terrie and Hannah to connect and communicate - which is how the story of how Terrie lived got to be on a site titled "How We Die."

Every time I think I'm incapable of being shocked, something comes along to prove me wrong. When I read the first draft of Terrie's account, I was stunned. It wasn't so much by the specifics - we get stories like this from time to time and they are eerily similar - the grimmest scenario, with the assurance that the injured person wouldn't want to live like that. If the family resists, the quality of their caring is called into question. It happens - I've heard similar stuff too many times to doubt it.

What really threw me about Terrie's story is that this happened in two different hospitals in two different states. Could it be that I haven't been cynical enough about how dangerous it is for people with disabilities in the medical system? And of course, William Peace's account adds to that strange feeling that things are maybe worse than they seem - and have been for a long time.

Personally, I'm still trying to sort all of this out. But I think that I think it's best and probably accurate to start out with some basic assumptions:

• These medical people aren’t “evil” or “bad” people, but operating from what they see as kindly, compassionate motives;
• They honestly believe that a young woman wouldn’t want to live the life of a quadriplegic;
• They honestly believe that most families would be better off without the “burden” of a family member with a significant disability.

I am going to go out on a limb and even guess that the fact that Terrie's family operated from strong Christian beliefs may have been discounted by the professionals they dealt with as "irrational" as opposed to their own "objective" evaluations.

The mostly unchallenged and unquestioned belief in the objectivity of medical professionals (especially in terms of how they regard themselves) can be especially dangerous in situations where someone's life hangs in the balance.

It's dangerous because there's nothing especially objective or rational in the belief held by the medical team that pressured Terrie Lincoln's family that she'd be better off dead. There's plenty of research that indicates that people with significant disabilities are much happier with their lives than medical professionals seem willing to believe is possible.

The trouble, I think, is that medical professionals are no more moved by research and factual information than the general public. What sticks with them are the worst memories - the memories of people dying after months of rehab/recovery; the worst points of adjustment to the realization of newly-acquired disability; the stressed-out and maybe cash-strapped families.

For hospital folks, there are no experiences with the power to provide balance to those kind of experiences and the emotional impact that comes with them. Discharges of patients are an unfinished story, with no closure, let alone a happy ending.

It becomes understandable (but not condonable) that some would jump to the assumption that it's just better to get a peaceful, dignified death than to go through medical hell to live a life with a significant disability.

So what do we do about it?

First, we need more people like Terrie and Bill to tell their stories. And name names where we can.

Because if my thoughts are anywhere near accurate, no amount of teaching or education will be effective in changing the attitudes of medical professionals who engage in the types of behavior covered in the two stories.

So what will work? Exposure. Hospitals and medical professionals seem to hate the experience of having outsiders get a glimpse of some of what they do - especially if outsiders don't like what they're seeing.

Exposure and the threat of accountability won't change attitudes, but it could have a powerful and lasting effect on behavior. I'll settle for a change in behavior - it's easier to measure. --Stephen Drake

Bad Cripple Shares Scary Thoughts About How Many People with SCI Needlessly Die

First, housekeeping: I'm saving my thoughts, etc. on Terrie's story until tomorrow. I've removed the "part 1" from the title of the blog post with her story since it really doesn't belong there.

In the meantime, William Peace at BadCripple read Terrie's story and it caused some scary thoughts and memories to surface:

Excerpt:

I vividly recall late one night asking a rehab nurse why there were no people with a high level SCIs on the ward. She looked at me with an odd expression and replied "think about it". Naive, I thought and thought and could not think of an answer that made sense. The nurse shook her head and told me to raise my level of injury from T-3 to C-3 and asked me if I really wanted to live that sort of life. After a pause I said not but that was not up to me, people had the right to choose. Such a decision I thought was made by doctor, patient, and family. Again she shook her head. That decision, she told me, was made in the ER and operating rooms by doctors. Patients who would be dependent upon a respirator and unable to independently move died. "They were allowed to die with dignity" she told me.

The instance described in the excerpt is from some 30 years ago. Peace fears - as do I - that stories like Terrie's (minus the survival) are becoming more common over time. Can we prove that? No. But the fact that it's happening at all is an outrage.

And, btw, if some medical professional writes me to tell me this hardly ever happens... The fact that is that they won't have any more hard data to base that belief on than I do in regard to my own suspicions. --Stephen Drake

Terrie Lincoln: "How I DIDN'T Die"

Terrie Lincoln works in the same building that hosts Not Dead Yet. She has an important story to share - and one that may bear similarity to other folks who have had "near-misses" with "end of life decisions."

Today, Terrie shares her story on the blog at the Center for Disability Rights. I share the story in its entirety and will save my comments for tomorrow. For today, please read what Terrie has to say, without further editorial comment from me.

How I DIDN’T Die

Posted on June 16, 2009

By Terrie Lincoln, Systems Advocate

For several months, I’ve been polishing the story of my recovery from the accident that brought me into the world of disability. Until recently, I hadn’t talked much about this period of my life. The memories can still make me angry. The anger isn’t about my disability, though. The anger is about the doctors that didn’t think I would have a life worth living – and how hard my family had to fight to make sure I received the treatment I needed to survive.

Folks at CDR and Not Dead Yet (NDY) have been discussing how and when to best launch this story when an opportunity unexpectedly came up. Stephen Drake of NDY was contacted by someone from “How We Die,” a website and TV series devoted to “end of life” situations. After a discussion with Stephen, the representative from the show became convinced that stories like mine should be included – the stories of people who escaped death due to families that resisted unrelenting pressure from medical staff to disconnect life support technology.

Information on the website is included below. They want more stories like mine and I know they’re out there. Please submit your stories of “near death” experiences due to negative medical attitudes – to the website below, to me and to Stephen Drake at Not Dead Yet.

How I DIDN’T Die

by Terrie Lincoln

If my family had listened to the doctors 12 years ago, I wouldn’t be able to tell you my story.

My name is Terrie Lincoln and I am a 31 year old quadriplegic. I live in Rochester, New York and work as a Systems Advocate at the Regional Center for Independent Living. I have a degree in social services and a bachelor’s degree in public administration. I am currently working on my master’s in social work.

At the age of 19, I had an automobile accident. They had to use the Jaws of Life to free me from the wreck and rush me to the hospital. After I got there, my family and friends learned I severed my spine and broke my neck. At that moment I had no idea what was wrong with me, since I was in shock and slipping in and out of a coma.

I was air-lifted to a nearby hospital in West Virginia a few hours later. The doctors then told my parents they were going to do emergency surgery on my neck — a neck fusion. They had to put a plate in my neck. The doctors also told my parents while I was being prepped that there was no way I could survive a broken neck. They said nobody lives with a broken neck. My Mom said: “We’ll see about that.”

The surgery turned out well and I started recuperating. While I was lying in the hospital bed that did not rotate because they did not want to injure me more, the doctors would come in and ask my mom if she was ready to pull the plug on me. “Why would I want to do that?” she would ask? The doctors answered, “What kind of life will she have— she won’t. She won’t be able to dance, walk, work, have a social life, or be independent.”

My mom, being the strong woman she is, asked the doctor if he would pull the plug on his own son/daughter. He walked out without answering. The next day when the doctor came in my dad was there with my mom. The doctor informed us that I was going to be in a veggie state for the rest of my life. First of all, who uses the word “veggie”? Anyway, my dad asked what veggie I was going to be because I hated green beans and would be mad if I was one.

The doctor said he didn’t find that funny and felt it was inappropriate. My mom said she felt he was being inappropriate by coming in every day and telling her to pull the plug on her daughter. The doctor responded that any good mother would pull the plug instead of seeing their baby suffer. At that moment, my mom leaped over my bed and started choking and attacking the doctor.

The doctors must have known they were fighting a battle they were not going to win. They knew they were killing me slowly with the lack of care I was receiving. Within fifteen days of being there, I had no bowel movement (they were scared to roll me), aspirated, had pneumonia, and collapsed lungs which they did not want to focus on at the moment. I was life flighted out on the fifteenth day.

Once I arrived in Columbus, OH we felt I was on my way to recovery. I had a new team of doctors who specialized in spinal cord injuries. The relationships with the doctors started off more positive than the last set until the first time I died, which was about 3 weeks after I arrived. I was a code blue and they resuscitated me but didn’t offer any suggestions on how to inflate my lungs or help me breathe.

Over the weeks I got worse and worse. Pneumonia was causing my lungs to fill and I was constantly flat lining (electrical time sequence measurement that shows no heart activity). The team of doctors asked: do you want to pull the plug? They said you could take her off her feeding tube and we could induce her into a coma and she won’t suffer.

It took my mom following one of the doctors around all day and to his car at the end of his shift to get him to open up and talk. She went into his office and grabbed a picture of his family and held it up to him and asked, “What would you do? Would you let them pull the plug on the one you loved without doing everything you could?”

My mom came back to my room and I remember seeing her cry for the first time. She held my hand, said a prayer, and promised me everything would be OK. She said she would fight to the end even if she had to tear the hospital apart.

The doctors came in the next morning earlier than usual and told us they were prepping me for surgery. My mom asked what kind. He said he couldn’t sleep the night before because of her and he was going to put me on a ventilator, which would breathe for me. When I got out of surgery they had a rotating bed waiting for me. The bed helped with weight shifts and shook — to help break up the stuff in my lungs.

After a matter of weeks, my health started improving. I had color back, no bed sores, regular bowel movements, and my pneumonia was improving. I got released after 3 months from the main hospital to a nursing home within the hospital. This section was for people who were in poor condition (not expected to make it) and those who had to live with a ventilator.

During the time I was there I shocked everyone. I refused to have my feeding tube, G-tube, and J-tube anymore. I was tired of being poked and going in and out of surgery for no reason. I felt safer and healthier having the tubes out instead of in.

We started working on goals and weaning off the ventilator. We knew my health was improving and we were thanking Jesus every day. I was spending hours a day off the ventilator and the doctors were still asking if I wanted to live the rest of my life with this condition. If I chose no, they would keep me off the ventilator and I would die. I could get injected with Morphine so I couldn’t feel it.

They’d work at my parents, saying things like: “Your daughter was so active before this accident and now she’s nothing. She’s just like Christopher Reeve, she will need help with everything, she won’t be able to push her own chair. She will have to use a sip and puff device.”

Then they’d work on me. Saying stuff like: “Are you sure this is something you can live with? Do you want to spend the rest of your life on a ventilator?”

These are all the things we heard every day even though my health was improving. What gives them the right to convince someone to end their life?

My respiratory therapist said when I get off the ventilator completely I could go to physical therapy. One Friday we did our daily disconnecting of the ventilator - but this time we never connected it back. I ended up staying off of the ventilator for good.

Weeks later I started therapy and eventually got discharged after 5 months of being in the hospital. When I returned for my follow-up appointment a year later I made it a priority to see that team of doctors. When I rolled into the offices pushing my own power chair, without a ventilator, and healthy as can be, their jaws dropped to the floor and their eyes began to fill with tears.

Through my journey, I could not have done it without my two biggest advocates—Jesus and my mommy. She never stopped fighting from day one and never took no for an answer.

TV Series and Website Seeking Stories on How We Die

A new Website and TV series is looking for first-person stories from patients, their families, loved ones, and doctors about how personal experiences have shaped what we believe about death and dying, and about the decisions we make for ourselves, for loved ones, or for patients at the end of life. The website is: http://how-we-die.org/HowWeDie

The series, tentatively titled “Stories,” is being developed by Marc N. Weiss, creator of the long-running PBS series P.O.V. and Tom Yellin, a veteran network news and public affairs producer. The series will explore experiences that tested or challenged their values and beliefs about who decides when and how we die, and what role, if any, government and healthcare institutions should play in those decisions. Visit the site and submit your story!http://how-we-die.org/HowWeDie

That's all for now. Part 2 (meaning my 2 cents) coming tomorrow. --Stephen Drake

Autube Podcast: A conversation with Stephen Drake

Well, if anyone is curious as to what the voice behind the typing sounds like, I am up live on a podcast on Autube.

Autube, funded by the Dan Marino Foundation, is "an issues-driven web channel enabling exchange of ideas for people with autism." The site is designed and operated by Kent Creative. The podcast is an edited version of an interview of me that was conducted by Jon Kent, president of Kent Creative.

A few words about the interview:

• My intonation is uneven and my speech hesitations worse than usual - a result of doing the interview while imitrex and a migraine battling it out in my skull.
• There are a couple of places where I laugh (kind of) and it might seem weird. In at least one of those places - talking about "aversives" - it was more of a nervous "tic" talking about something I hate looking back at, but feel I have a duty to do just that.
• A lot of specific information about media coverage and advocacy groups was edited out of the interview. This is understandable but regrettable. Hence, the quote from a leader of a Canadian "right to die" group equating the length of a girl with cerebral palsy's life with a prison sentence isn't mentioned (Marilyn Seguin on Tracy Latimer). Also missing is a lengthy discussion of the coverage of Katie McCarron's murder - and the role that specific advocacy groups (e.g. Autism Speaks, Autism Society of Illinois, ANSWERS) played in promoting a "blame the victim" theme in coverage of her death.
• Finally, this is in audio only. The site is a new one and they are working at providing print transcripts of podcasts.

So, for anyone who is interested, here is a discussion of some of my journey through life and the advocacy work I do now:

A conversation with Stephen Drake (mp3 format)

The upside of the omission of some of my more pointed and specific references, of course, is that I may be spared an increase in hate mail/comments. --Stephen Drake

Phil. Inquirer: Art Caplan Delivers Some Truth About Kevorkian, But Misses (or Evades) His Real Impact on Assisted Suicide Movement

On Monday, June 8, the Philadelphia Inquirer published an op-ed by bioethicist Art Caplan. Expressing his concern over the news that Al Pacino plans to play Jack Kevorkian in a movie for HBO, Caplan thought it was time to do some preemptive truth-telling about Jack Kevorkian. His commentary is titled "The truth: Kevorkian was less than noble."

Caplan does an excellent job in describing the callous, self-aggrandizing reality behind the mythology that was built around the man:

Kevorkian was always about Jack as much as he was about the strangers he briefly met and dispatched. When I asked him once if he were aware that one of his victims had a long history of severe depression and had spent many years in a psychiatric hospital, he snorted and replied, "How am I supposed to know all the details of her life?"

Where I depart from Caplan is in his description of Kevorkian's relationship to the efforts of the movement - of the organizations and activists who pushed legalization of assisted suicide:

Despite his skill in administering potassium chloride to the fearful, disabled, lonely, and inadequately treated, Kevorkian was a poor choice to lead the movement to legalize assisted suicide.

This is where I start to scratch my head. No one ever seriously suggested that Kevorkian lead the movement to legalize assisted suicide. Nevertheless, I would argue - seriously - that Kevorkian was the best thing that ever happened to the movement, due to the shrewd way in which the "mainstream" organizations dealt with him.

Here's where I have to give a little history. Before the start of Kevorkian's career encouraging and facilitating sick and disabled people to kill themselves, there were two "extremes" to the assisted suicide debate. At one end were people who opposed the practice and at the other end were organizations - Hemlock and Compassion in Dying - that advocated for legalization of the practice under superficially strict conditions.

Then Kevorkian came along - his demeanor, his open defiance of the law, and his wide-open acceptance policy in terms of "helping" defined a new extreme edge - which moved organizations such as Hemlock and Compassion in Dying closer to the middle in terms of public perception, even though their goals remained unchanged. (Note: Compassion in Dying and Hemlock combined to form the current organization Compassion & Choices).

While I have been aware of this dynamic for years, I really didn't have a good framework with which to talk about it.

I do now.

There are a number of names for this type of argument or political strategy. "Gonzo Galore" at the Gonzolog has listed and described a number of these variations of a logical fallacy (fallacious but often effective) in her blog post "Argument to moderation":

Hey, it's like Tuesday, idk, time for picking on quitical thinking, LoL, 'cos like wtf is wrong with some pplz logic? But first, check out this fallacy:

Argument to moderation:
argumentum ad temperantiam, also known as middle ground, false compromise, gray fallacy and the golden mean fallacy) is a logical fallacy which asserts that a compromise between two positions is correct. The middle ground is often invoked when there are sharply contrasting views that are deeply entrenched. While an outcome that accommodates both parties to some extent is more desirable than an outcome that pleases nobody, it is not necessarily correct.
Wikipedia

False compromise:
X and Y are opposite alternatives. So Z, a middle path, is the best choice.
Avoid extremes. Seek compromise, a moderate, middle way. Take averages. Assume that any polarized view is automatically wrong.
ChangingMinds.org

Middle ground:
This fallacy is committed when it is assumed that the middle position between two extremes must be correct simply because it is the middle position. this sort of "reasoning" has the following form:

1. Position A and B are two extreme positions.
2. C is a position that rests in the middle between A and B.
3. Therefore C is the correct position.
The Nizkor Project

Oh good, now that we've learned something, we need examples!

Gonzo is just one of the many prolific and outstanding writers in the neurodiversity community. Her series on logical fallacies are an effort to help other autistic people and others somewhere "on the spectrum" to counter the bs masquerading as logical argument that get lobbed their way - mostly by people who are offended that someone who has a label like aspergers/autism/nonverbal learning disabilities doesn't want to be "cured."

She's right to jump on it. Going beyond argument to strategy, this approach - fallacious or not - is highly effective.

That's where Kevorkian and the "mainstream" organizations come in. As I said before, Kevorkian's activities and rhetoric defined a new extreme edge. But it didn't stop there. Obviously realizing the value of no longer being the ones defining the extreme edge, leaders took efforts to paint Kevorkian as "extreme" and themselves as "moderate."

Here is just one example of prominent assisted suicide advocates using Kevorkian to reposition themselves and their organizations away from the "extreme" to more comfortable middle ground.

From a Seattle Times article published on March 27, 1999, after the conviction of Jack Kevorkian on second-degree murder charges for his role in the death of Thomas Youk:

"It demonstrates just how far outside the mainstream his actions are," said Barbara Coombs Lee, executive director of the Compassion in Dying Federation, a national right-to-die organization based in Oregon.

"This was not about assisted dying as we know it here in Oregon, or as Compassion has advocated for it. Or as we have counseled patients since 1993," she said.

"This has more to do with Dr. Kevorkian's unique and flamboyant way of flouting the law than it has to do with physician-assisted suicide, as an issue or a policy."

Farther down, though, is what I like to refer to as "the money quote":

(Faye) Girsh and Coombs Lee agreed that Kevorkian's actions help define a mainstream position on assisted suicide. "If you see the extremes, clearly, you can recognize the moderate, compassionate middle," Coombs Lee said.

I want to stress that I got to this article through a very quick search using google. If I wanted to spend the time sorting through my files, I could come up with many more examples of Coombs Lee, Tim Quill and others doing their best to use Kevorkian to shift themselves to the middle - and presumably higher moral - ground.

There are other points and critiques I could make of Caplan's commentary, but they would take a lot of space. As Caplan's own attempt at clarifying the Kevorkian mythology shows, it takes a lot of information and space to counter well-established misinformation. --Stephen Drake

ADDENDUM: I received a comment to this post that I think should be added here. It's from Gonzo, whose work was central in helping me write this piece:

Hey thanks Stephen!!
I want to point out, that my "idk, wtf, lol" writing style in this post was satirizing the mindless comments in a facebook group.

When it comes to disability rights, there are issues, that are highly complex: eugenics, assisted suicide and ethical science, etc, and the problem is that most people form opinions based on barely any information on the subject.

Words like "cure" sound really harmless, so the casual onlooker will not realize all the ehical implications that need to be considered.

Same with assisted suicide, to most it sounds like mercy to let someone with say incurable cancer die, without thinking what this actually means for the disabled.

It's telling that Kevorkian didn't care about the woman's depression, any depressed person without a disability would have been encouraged to get psychiatric help.
In her case it was a good excuse to be rid of her.

Again, I really hope people check Gonzo's blog out. She's one of the many autistic bloggers I have listed as "favorites" on my networked blogs feature on facebook.

Chicago NDY Visits Final Exit Network's Annual Meeting

(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

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 20^th 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!

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