Not Dead Yet Applauds PBS Documentary “Lives Worth Living”

(This press release will be issued on the wires via prweb on Oct. 27, 2011)

(Rochester, NY) Not Dead Yet, a national disability organization that opposes legalization of assisted suicide, applauds the documentary “Lives Worth Living” which begins airing October 27 on PBS. Produced and directed by Eric Neudel, “Lives Worth Living” combines rare historical footage with interviews of individuals with disabilities who led the development of the disability rights movement.


The documentary features compelling personal reflections by Fred Fay, one of the earliest leaders who passed away this year, and operated for years from a motorized gurney that he drove around his home. “Fred Fay was at the center of the earliest and largest disability rights email network in the country,” observed Diane Coleman, President and CEO of Not Dead Yet. “The Justice For All listserv was the best source of information for people in the disability rights movement in the 1990’s, and Not Dead Yet was grateful to Fred for the opportunity he provided for us to communicate press releases and action alerts to thousands of disability activists.”


Several of the other disability rights movement leaders interviewed in the documentary have worked closely with Not Dead Yet as well. Among these is Bob Kafka, a national leader of the direct action group ADAPT which conducted many of the marches and protests documented in historical footage. Kafka suggested the name “Not Dead Yet” for the group based on a running gag in the movie “Monty Python and the Holy Grail.”


Also interviewed was Marca Bristo who chaired the presidentially appointed National Council on Disability (NCD) during the Clinton Administration. She arranged a debate before the Council members between Coleman and Derek Humphry, co-founder of the Hemlock Society, resulting in a formal NCD position statement opposing legalization of assisted suicide issued in 1997. NCD was later chaired by Lex Frieden during the second Bush Administration. Frieden requested that Coleman provide a cover memorandum when NCD reissued the position paper against assisted suicide in 2005.


“It’s an honor to have been mentored by a number of the powerful leaders who tell the story of our movement in this groundbreaking documentary,” Coleman said. “A lot of people question how a group like ours that claims to be about disability rights can oppose assisted suicide, something generally viewed as a progressive social cause. Perhaps after viewing Lives Worth Living, which challenges the prevailing fear that severe disability is a fate worse than death, it will be easier to understand. We’re really just talking about being equal under the law, and a streamlined path to death is not equal treatment.”


For more information, see a PBS press release at   about Lives Worth Living as well as video clips from the documentary.

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Diane Coleman Counters Support for Assisted Suicide with Reality Check in Her Hometown Paper

(Editor's note - this should have been posted over a week ago.  The timelag between the writing of this post and the publishing on the blog is entirely my responsibility.  --SD)

I grew up in Kalamazoo, Michigan, so when the Kalamazoo Gazette’s October 1^st edition featured three opinion pieces supporting assisted suicide, I had to respond. The authors were three senior high school students who are members of the paper’s 24-member Young Editorial Staff (YES). The paper noted that the students pick their own discussion topics and the views expressed are solely those of the students. There were no counterpoint editorials opposing assisted suicide.

The three editorials can be viewed in their entirety in the paper’s online archive. They serve to remind us how little accurate information about the issue is out there in the mainstream media.

The first opinion writer pointed out that Jack Kevorkian was arrested many times and found not guilty “until 1997, when the Supreme Court ruled it unconstitutional for people who could not take their own life to be helped along the way. However, those who are physically able to end their own lives have the constitutional right to do so.”

Maybe it’s just the JD in me that needs to provide corrections: The Supreme Court actually ruled in 1997 that state laws against assisted suicide arenot unconstitutional, but did not declare assisted suicide unconstitutional and left the door open for states to legalize it. In addition, the physical ability of a person to end their own life has not been considered legally relevant, nor has an alleged inability to end one’s own life ever been one of the statutory criteria to be eligible for assisted suicide. Moreover, historically, suicide (as distinguished from assisted suicide) was not a constitutional right and states could outlaw it, even though suicide has not been illegal in any state for many years.

The second opinion writer, who favors voluntary euthanasia as well as assisted suicide, stated, “In the majority of assisted suicide cases, the patients have a condition that causes them great pain, a slow death, and eventual loss of mental ability.” In contrast, according to the Oregon Reports, only 15 % of the people were reported to have actual pain or concern about future pain as a reason for requesting a lethal prescription, and this reason was attributed to only 21% over all 13 years of reports. It’s hard to know how she came up with the “eventual loss of mental ability” factor either.

The third opinion writer stated that, “Terminal is defined as a medically incurable illness,” which isn’t exactly the definition under the Oregon and Washington statutes requiring two doctors to predict that the individual will die within six months. But maybe she looked at the New Hampshire proposal.  In any case, she concluded that eligibility for assisted suicide should not be limited to the terminally ill: 

 

I say we trust this matter to the only judge available: ourselves. But I'm not suggesting we open clinics with "walk-ins welcome" signs. I agree completely with the idea of a lengthy application, testing, and approval process to make certain the decision is made soberly and willingly, and for stronger reasons than a comparatively fleeting low point.

She didn’t say who would review the applications, administer the tests, or issue the approvals, but whether it be a doctor or some other authority figure who determines eligibility, it’s hard to say that “the only judge” is the individual.

With the typical word limit on letters to the editor, I didn’t try to make these points in my response. Instead, I highlighted the point that Margaret Dore has made so effectively, the fact that assisted suicidelaws contain no safeguards after the lethal prescription is issued, creating several dangers, including that the lethal dose could be administered by anyone with or without the individual’s consent.

I was glad to see that my letter was published in my hometown paper on October 11. But the four online comments submitted by other readers all favored assisted suicide, and showed zero comprehension of the illusory nature of the “safeguards” in assisted suicide laws. – Diane Coleman

Train Wrecks and Being Bushwacked in the Land of Oz - Bill Peace, Danny Robert and Nadina LaSpina report on the Oz Show

As we reported last week, several NDYers and other disability activists went to the taping of the "Dr. Oz" show on assisted suicide.  We were able to share the impressions of a disabled man who is part of the Final Exit Network (FEN) who came away feeling that the staff of the show was dishonest and disrespectful in dealing with him and discussing any accommodations to his disability. 

Last Friday, Bill Peace, one of the disability activists who attended the show as a "select audience member, posted a long report on his experiences in a post titled "Dr. Oz on Assisted Suicide: A Train Wreck."  Below is the opening paragraph:

Last week I received an email from Stephen Drake, research analyst, for Not Dead Yet. He wrote that he and Diane Coleman might be on a syndicated television program called Doctor Oz. The subject was assisted suicide, not exactly the usual afternoon television fodder. To say I was skeptical would be too generous—daytime television is not exactly known for quality programming and I had never heard of Dr. Oz. As it turns out Drake and Coleman could not appear. I decided to attend knowing some members of Not Dead Yet would be present as well. I had three concerns: first, the daytime television model is for tear jerking, maudlin depictions of any issue and this would undermine any serious discussion. Second, would the show use people with a disability as mere window dressing for the viewing audience. Third, would the show be grossly biased. My concerns were well placed. The taping of the show was in my opinion a train wreck. It was an amazingly horrible experience. All my concerns came to fruition. In fact I would go as far as say the show, its host and producers were unethical.

That really is just the beginning.  You can read the rest at his blog "Bad Cripple."

Danny Robert and Nadina LaSpina also attended the show taping as part of the "select audience."  Both Danny and Nadina are long-time activists with ADAPT, DIA and NDY.  (Nadina is also a member of the NDY Board of Directors) Below is a an account of the experience from both of them:

Bushwhacked in the Land of Oz

Danny Robert & Nadina LaSpina

Wednesday was a dark and rainy windy day here in the Big Apple. We were invited to be part of a taping for the Dr. Oz Show on the topic of assisted suicide. Our car service pick up was scheduled for 7:15 AM. We couldn't find the van which was parked far from our door and got soaked but we got to the accessible entrance to 30 Rock before 8:00.

Julie Maury, Bill Peace, Hope Derogatis and Ari Ne'eman, all people with disabilities and disability rights advocates, were already there. We had each been interviewed by producers prior to being invited to appear on the show. We were directed to a large elevator to the sixth floor where we all showed our IDs and were given our tickets. We were received very cordially, with big bright smiles, by the production staff who all looked like high school cheerleaders. “Are you excited to be on the show?” one of them asked. “As much as I am when I go to the dentist,” Nadina answered.

Though we had never seen the Dr. Oz show, we expected it to be low quality, shallow and (especially having read Steve's blog) extremely biased. But we had no idea of how great the bias and how blatant the hostility that awaited us in Oz's studio would be.

We were brought back to the elevator and then escorted into a small “holding room." With some difficulty, we all squeezed in. Dr. Byock, a palliative care doctor who opposes assisted suicide, stopped in to introduce himself and we all pleasantly shook hands. He was scheduled to be on the small expert panel, and we were scheduled to be in the pro-or-con segment of the audience.

We talked among ourselves, deciding who would make which point. Very naively, we thought we would all get a chance to speak. Then a young man, accompanied by someone with a video camera, entered and introduced himself as Greg. He said he was a producer and asked us to articulate our opposition to physician assisted suicide. Each of us had something to say and he listened and asked questions. He explained that in the first segment of the show, Dr.Oz would bring out his special guest, Montel Williams, who would explain why he is in favor of assisted suicide, then Dr. Ablow would argue against, and then a woman with ALS would be brought out. Greg asked that we not interrupt or heckle, and that we would get a chance to speak after the woman with ALS.

Montel gave a dramatic performance, grabbing his legs from time to time while he spoke, his face contorted in pain. He said he wants to have a way out when the pain gets unbearable and he wants to die with dignity. Dr. Ablow gave some good arguments, saying "I would never legally allow physicians to decide who should live and who should die... physician assisted suicide is a slippery slope..." But right from the start it was very obvious that Dr. Oz and most of his audience were not interested in hearing any arguments against.

Then Dr. Oz introduced Dana, an African American woman in her late 40s or early 50s with ALS. Her attendant rolled her to a spot right in front of the panel. 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 and I looked at each other and said “that's why she wants to die.” Nadina quickly jotted a note in preparation for her comments.

As Dana spoke, the sighs and the sniffles from the audience kept getting louder. The cheerleaders went around with boxes of tissues, the bright smiles on their young faces now replaced by mournful expressions.

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.”

Greg had promised that after the break, we would have a chance to speak. After we heard Dana, we decided that I should go first, since my physical condition is, outwardly, very similar to hers, and my need for a ventilator is actually greater than hers. So I told my story, including my MS diagnoses, the break up of my marriage, how bleak the future appeared to me then, and the resulting near-suicidal depression. I said how glad I was that no lethal prescription was available for me then. I said that meeting disabled people and becoming part of an activist community got me out of the depression. That I fell in love with Nadina 18 years ago and, in spite of my losing function and at times becoming depressed, I lead a full, rich and very happy life.

Nadina picked up here and said that losing function often is accompanied by temporary depression, and that having available a lethal prescription would be very dangerous for someone with a progressive disability. Then she started saying that assisted suicide was usually presented as a “choice for the terminally ill,” but here we were talking about people (Montel, Dana) who were not terminally ill but had disabilities. Dr. Oz didn't let her continue. He quickly walked away with the mike, while Nadina yelled “I'm not finished.”

During the break, Nadina complained to Dr. Oz that she had not been allowed to speak. "I'll come back to you," he said. But he never did.

In the next segment Dr. Oz brought on two more panel guests, Dr. Ira Byock and Barbara Coombs Lee from Compassion and Choices. Dr. Byock was very good, stating there was no need for assisted suicide given the availability of good palliative care. He pointed out to Dana that she could refuse treatment. He did so in a very gentle way. He asked her: “do you want to tell your doctors, maybe next time you're hospitalized with pneumonia, that you'd rather not have them do anything, let nature take its course?” (Maybe not his exact words, but something like that). Dana did not answer. Dr. Oz quickly stepped in. “Let her answer” Nadina yelled out, “she doesn't want to die.” But Dr. Oz had quickly changed the subject.

Montel kept repeating he wanted to maintain his dignity. A few times we yelled out “What do you mean by dignity?” and “Do you think we have no dignity?”

Barbara Coombs Lee didn't say much. She didn't need to. By the time she came on, the argument in favor of assisted suicide had been completed (if there ever was an “argument” – from the beginning it was clear which side Dr. Oz was on and that the show had been scripted). Dr. Ablow was booed a few times. Dr. Byock was booed when he said, "We're not talking about choice but about control. You want to make sure you die with your boots on and make up."

Every time a new segment started, Dr. Oz would say things like: “The question today is: do we have the right to end our own life if we're suffering?” or “if our quality of life has deteriorated?” On the big screens the question was: “Do you think you have the right to end your own life?” (just as sloppy and as the show’s online survey, conflating suicide with assisted suicide, conflating the right to refuse treatment with assisted suicide).

The final segment was supposed to be questions and comments from the audience. We were divided by an aisle into pro and con. During the break, Nadina managed to get the attention of the producer, Greg, who interviewed us before the show. “Dr. Oz didn't let me speak,” she told him. “NDYers have a unique perspective. We want to be heard.” He answered: “I'm sorry.”

Dr. Oz let a right-to-lifer speak briefly. He called me (Danny) a hero. And Montel replied: “let's not pit patient against patient.” Julie yelled out: “We're people not patients”, but without the microphone, none of us could be heard. A hospice nurse spoke against assisted suicide, mentioning how a woman's life was prolonged long enough for her to hold her grandchild in her arms. But most of the comments were from the other side of the room. Horror stories about people made to suffer, told by someone other than the person, and you couldn’t tell the real cause of the suffering.

Nadina, Julie, Bill, Hope and Ari kept raising their hands but Dr. Oz totally ignored us. One guy said: "These Not Dead Yet members are selfish. They don't care about people suffering. They don't want anyone to have choice.” We yelled out “It's the other way around.”

Dr. Oz kept ignoring us. But at one point, he was right next to Ari and Ari had his hand raised right in front of Dr. Oz's face. Dr. Oz asked him: "Are you right to life?" Ari answered: "No, I'm with the National Council on Disability.” Dr. Oz let him speak and Ari was great. He gave some statistics about Oregon, and even mentioned the Latimer case, the Canadian farmer who got a lot of support from the assisted suicide movement when he was prosecuted for murdering his 12-year-old daughter with cerebral palsy.

We tried after the show to reach out to Dana. Julie tried to catch up with her and her family, but was pushed away by Dr. Oz's production assistants.  All of us NDYers were extremely frustrated and agitated. We all agreed we had been setup and just used as window dressing.

That audience was a microcosm of our society. Most every one in that audience was convinced that disability is a fate worse than death. Most of those in favor of assisted suicide thought we were selfish for wanting to live no matter what. Others, like the right-to-lifers, sitting along side us, saw us as heroic and saintly for putting up with what they imagined was great suffering and not succumbing to sinful thoughts of suicide. Sitting in that studio, we saw more clearly than ever how very important Not Dead Yet's work is and how extremely difficult.

My thanks to Bill, Danny, Nadina and all of the other disability activists who went through the ordeal or participating in what - in hindsight - is a circus masquerading as a show on health issues.  --Stephen Drake