This past week, the U.S. Senate voted to proceed with consideration of U.S.ratification of the United Nations Convention on the Rights of Persons with Disabilities (CRPD). With a two-thirds majority required to move to the next step, the cloture vote was 61 to 36, with 3 not voting.
Not Dead Yet has not yet formally considered endorsing the CRPD, but after this week, I think a Board vote is on the immediate horizon. The attention that the CRPD is receiving this week and next is a reminder of how important it is for the disability community to unite behind this groundbreaking treaty that has been years in the making. I say “groundbreaking” not because it necessarily adds to U.S.law, as most say it does not, but because it demonstrates the worldwide significance of the disability community and disability rights.
That being said, let me point to some specific Articles of the CRPD that are relevant to Not Dead Yet’s goals.
First, there is Article 10, entitled “Right to life,” which does not carry exactly the same connotation and meaning that the phrase does in U.S.culture-war politics. Article 10 simply states:
States Parties reaffirm that every human being has the inherent right to life and shall take all necessary measures to ensure its effective enjoyment by persons with disabilities on an equal basis with others.
Not Dead Yet’s concerns about futility policies, surrogate decision-making and assisted suicide all pertain to the notion that persons with disabilities have the same inherent right to live as everyone else.
CRPD Article 16 addresses “Freedom from exploitation, violence and abuse.” Article 16 begins by stating,
1. States Parties shall take all appropriate legislative, administrative, social, educational and other measures to protect persons with disabilities, both within and outside the home, from all forms of exploitation, violence and abuse, including their gender-based aspects. . . .
The Article goes on to call for related efforts toward abuse prevention, public education, reporting, victim support services, protection services, investigation of abuse and appropriate prosecution of abusers.
As we also know, persons with disabilities are more likely to experience abuse than their non-disabled peers. This reality has a direct bearing on Not Dead Yet’s goals of ensuring that the civil rights of disabled people are protected from inappropriate surrogate decisions to withhold life-sustaining treatment, and of ensuring the equal protection of the law when disabled people are the victims of violence and even homicide.
Finally, CRPD Article 25 addresses “Health.” The most relevant portions affirm essential principles of nondiscrimination in health care:
States Parties recognize that persons with disabilities have the right to the enjoyment of the highest attainable standard of health without discrimination on the basis of disability. States Parties shall take all appropriate measures to . . .
d) Require health professionals to provide care of the same quality to persons with disabilities as to others, . . . through training and the promulgation of ethical standards for public and private health care;
e) Prohibit discrimination against persons with disabilities in the provision of health insurance, . . . ;
f) Prevent discriminatory denial of health care or health services or food and fluids on the basis of disability.
Obviously, subsection “f” directly states Not Dead Yet’s goal to prevent the withholding of health care, and even food and fluids, on the basis of disability. Sadly, we know that this happens in the U.S.and elsewhere. Not Dead Yet has been talking about it for years, and this year our concerns were substantiated in a major Report from the National Disability Rights Network. The CRPD won’t cure this injustice, but it will affirm that it is an injustice, and help establish that it is an international human rights issue.
The U.S. should ratify the CRPD, which has already been ratified by 117 other nations as of July 2012. It won’t change U.S.law, given that disability rights consistent with the CRPD are already on the books here. But it will provide global leadership on disability rights and help protect our disabled citizens abroad. Moreover, it will affirm our nation’s commitment to our stated ideals of equality and justice for all. – Diane Coleman
Last Friday, three disability activists in New York City went to the Justice Action Center at the NY Law School to distribute flyers protesting the way in which a symposium on “Freedom of Choice at the End of Life” handled “issues of concern” that people with disabilities have with proponents of assisted suicide (and other “end of life” issues). The “discussion” was relegated to a session about “special people” and the discussion framed by opponents of disability rights advocates and activists. The problems with that approach – for those who don’t immediately see one – were discussed on the blog last month.
We are very grateful to disability activists Marla DeFex, Nadina Laspina and Danny Robert for taking this on for us. Between their presence and leafleting – and some correspondence with faculty associated with the Justice Action Center – I think there was – finally – some discomfort regarding the way in which disability concerns were handled at this event (e.g. without us). It will be interesting to see what Thaddeus Pope writes about this – if he writes anything at all.
Below is a copy of the flyer that they distributed at the event (with pictures following).
NOTHING ABOUT US WITHOUT US!
WE ARE DISABILITY RIGHTS ACTIVISTS WHO OBJECT TO A SYMPOSIUM THAT CLAIMS TO ADDRESS DISABILITY RIGHTS CONCERNS BUT INCLUDES NO PRESENTERS FROM THE DISABILITY RIGHTS MOVEMENT.
There are multiple and major problems with the third panel which the Symposium materials describe as follows:
“Panel III: Special People, Special Issues This panel will discuss the issues of concern for people with disabilities and the conflict between organizations dedicated to protecting their rights and end-of-life advocates. The panel will discuss the views of some of the major religion (sic) and whether conservative theological values can co-exist with patient choice. Finally, the panel will conclude with a discussion of the quality of medical care provided to prisoners and how their end of life choices are treated.”
It is likely that “issues of concern” to disability rights activists will be discussed by panelist Alicia Ouellette. Ouellette recently published a text on bioethics and disability – apparently becoming the newest bioethicist who wants to become known as the “disability-conscious” bioethicist – someone who relates slanted, distorted and outright “straw man” versions of disability critiques, concerns and strong objections to both bioethics and so-called “end of life” advocates. Ouellette gets many things wrong about disability issues in her book.
It appears likely that panelist Ann Neumann will focus on religious issues, but her blog “Otherspoon” has demonstrated her longstanding marked disdain for disability advocates who organize against pro-euthanasia and assisted suicide groups. In her July 2012 post on “Otherspoon,” she used a familiar move that privileged people make when they’re about to demean and dismiss members of a minority, writing about her great “friendship” with disability studies academic Bill Peace (Bad Cripple blogger), a conventional shield for what came next in her post:
I would never take him to task for how he feels. Or over not seizing his autonomy from hypothetical others, including “pro-life” organizations that have worked very hard to recruit disabled individuals and groups to “their side”–with scary threats of a “culture of death” just waiting around to kill off the “abnormal.”
Instead of giving a fair account of the concerns of disability advocates about these issues, she inserts extreme slogans from the Religious Right – and then implies that we are jumping on their bandwagon because we’re just poor, scared little cripples who can easily be “recruited” by the right propaganda. She denies the agency of disabled people, asserting that those stands we take that she disagrees with can’t be our own.
What makes this all the more appalling is that this Symposium will happen under the auspices of the University’s Justice Action Center. Sadly, the Justice Action Center fails to show even a modicum of respect in making sure the perspectives of disability rights advocates and activists are represented fairly and accurately, and by disability rights activists ourselves, as other minority groups and women would have a right to expect.
On November 12, we wrote to the following Symposium co-sponsors, urging them to withdraw their sponsorship:
In the picture above (from left to right), Marla DeFex holds a sign that says “EQUAL RIGHTS INCLUDE EQUAL SUICIDE PREVENTION,” Nadina Laspina holds a sign that says “IT’S NOT COMPASSION, IT’S CONTEMPT!” and Danny Robert holds a sign that says “WOULD YOU RATHER BE DEAD?”
Nadina Laspina at left talks to Thaddeus Pope while Danny Robert – facing away – talks to unknown symposium participant
Editor’s note: This is a post I wrote about the Final Exit Network in March of 2009. It’s very relevant today, given the revelations discussed in yesterday’s post about the Frontline documentary that included a detailed look at the Final Exit Network. Even back in 2009, I wondered – if the allegations about restraining peoples hands were true – what the likelihood was of “assistance” crossing the line to “murder.”
Of course, now that we know that GBI did, in fact, tape Ted Goodwin describing what he did to restrain people’s hands – even giving a demonstration that can be viewed by everyone, the question becomes more urgent than ever: Have these zealots crossed the line and committed murder – and if so, how often?
(The link to the AJC article below is nonactive, but the article itself should be available for purchase through the AJC site.)
Final Exit Network, Zealotry and Groupthink
March 10, 2009 | posted by Stephen Drake
The latest story from the Atlanta Journal-Constitution centers on Dr. Lawrence Egbert, the “medical director” of Final Exit Network (FEN). According to the AJC, Egbert’s own words describe him as some sort of Bizarro-world version of Will Rogers, who said “I never met a man I didn’t like.”
In the Bizarro world of Egbert and company, it runs like this: “I (almost) never saw a suicide plea from someone who didn’t deserve to die.”
As medical director and co-founder of the Georgia-based Final Exit Network, Egbert in the past four years approved the applications of people who wanted to die because they were diagnosed with terminal cancer.
He approved the applications of people who wanted to die because their bodies were wasting away with ALS or multiple sclerosis.
He approved the applications of people who had not been diagnosed as terminally ill but whose quality of life, in their mind, was no longer worth living.
Egbert, an 81-year-old Baltimore anesthesiologist and teacher affiliated with the Johns Hopkins University School of Medicine, said in an interview Friday that there were times when he rejected people who wanted to die, “but not very frequently.”
Of course, the allegations from the Georgia Bureau of Investigation go beyond simply providing information and “being there.”:
The GBI says the group has a pattern of assisting people in suicides in which a “hood” is lowered over the person’s face, and the person breathes helium until losing consciousness. Death can take 10 or 20 minutes longer.
The GBI alleges that the group breaks state law by holding the hands of the person to prevent struggle or removal of the hood.
There’s no word yet as to whether or not the GBI has this on tape, which is a common practice in “sting” operations.
Friends and sympathizers reject the notion that members of FEN could ever have actively prevented someone from taking the “exit bag” off.
Yet, out of at least 200 (Egbert admits to this) suicides, there apparently hasn’t been one single case in which a person changed their mind – rejecting the feeling of suffocation and claustrophobia. Not one. If there had been one, that person would have needed immediate medical attention. There would be no time to get rid of evidence – paraphernalia, fingerprints, etc. before the paramedics arrived. There sure would be a lot of unpleasant questions to deal with – and possibly a civil suit by the family if brain damage occurred.
But that is pretty cynical and self-serving motivation. It’s easy enough for those of us who don’t think much of the ethics of pro-euthanasia/assisted suicide activists to believe members of FEN would slide from “assistance” to “murder.”
But most people probably don’t feel that way. It’s unthinkable, many would say, that intelligent and ethical people could let their behavior lapse so badly.
Guess what. It’s not unthinkable at all. In fact there’s a name for the phenomenon in which intelligent and ethical individuals – as members of a tightly knit group – can do stupid and unethical things.
It’s called groupthink – originally studied and defined by psychologist Irving Janis. It’s a fascinating and complex topic, with some real-world examples.
Illusions of invulnerability creating excessive optimism and encouraging risk taking.
Rationalising warnings that might challenge the group’s assumptions.
Unquestioned belief in the morality of the group, causing members to ignore the consequences of their actions.
Stereotyping those who are opposed to the group as weak, evil, disfigured, impotent, or stupid.
Direct pressure to conform placed on any member who questions the group, couched in terms of “disloyalty”.
Self censorship of ideas that deviate from the apparent group consensus.
Illusions of unanimity among group members, silence is viewed as agreement.
Mindguards — self-appointed members who shield the group from dissenting information.
After years of operating without any consequences, it’s easy to see how FEN members could have developed a feedling of invulnerability. Anyone who has lurked on Derek Humphry’s (Humphry is an advisor to FEN) email list or engaged the most zealous euthanasia supporters has encountered the symptoms covered in numbers 2-4 firsthand. Number 5 has played out on Derek Humphry’s email list several times – most notably when one member suggested that Jack Kevorkian’s activities in assisted suicide might have been reckless and irresponsible. Seeing that kind of thing play out makes it quite possible that there is at least some degree of self-censorship going on within the movement to avoid the dogpiling that occurred in the Kevorkian episode. That, of course, leads to the illusion of unanimity. While it’s impossible to know if there were “mindguards” in FEN itself, Humphry is pretty careful in handpicking information sent out to his list, highlighting news items that reinforce the “rightness” of his cause and framing the opponents as opportunists and/or religious zealots.
So, even starting from the highly questionable assumption that FEN members are moral and ethical people, they operate in a world that is geared toward the erosion of those aspects of their character in favor of group cohesion, loyalty and self-preservation.
Well, I spent a significant amount of time today going through the video and painstakingly transcribing key quotes, only to find out a little bit later that the Frontline site has posted a transcript. If you heard a heavy sigh late this afternoon, that was me – I was too tired for the more usual stream of colorful language I’d use in situations like this.
There will probably be a third look in the next few days, but today I want to focus on what, to me, was the single most striking set of statements and revelations that emerged in the documentary.
When the news of arrests of members of the Final Exit Network (FEN) in Georgia made the news in February, 2009 – there was a disturbing allegation in addition to assisting/facilitating the suicide of John Celmer, a man who had gone through tough cancer treatments, but was cancer-free at the time of his death. The following is an excerpt posted in the NDY blog taken from an article in the Atlanta Journal Constitution – an article that is now only available through a pay wall.
The death had been planned for months, authorities say. Two helium tanks were purchased, along with an “exit bag,” or hood to be placed over the suicidal man’s head.
Thomas “Ted” Goodwin, 63, formerly of Kennesaw, and Claire Blehr, 76, of Atlanta, would observe the death of the man they were told suffered from pancreatic cancer. In truth, the man was a Georgia Bureau of Investigation agent conducting a sting operation at a residence in Dawson County.
On Wednesday, authorities say, Goodwin walked the undercover agent through the steps that would have killed him. He demonstrated how he would hold down the undercover agent’s hands to prohibit him from removing the “exit bag.” (Emphasis added)
At that point, other agents moved in and arrested Goodwin, said GBI spokesman John Bankhead. He, Blehr and two men in Maryland were taken into custody on charges they helped John Celmer, 58, of Cumming, commit suicide by the same method last June.
Celmer’s family found his death to be suspicious. They contacted the Cumming Police Department, which led to the GBI’s involvement.
Bankhead said agents found evidence in Celmer’s house linking him to the Final Exit Network, a Marietta-based volunteer organization —- of which Goodwin is president —- supposedly dedicated to serving individuals who are suffering from an incurable illness or intolerable pain.
This is how FEN broke into the national consciousness. By far, the most damning allegation made was the claim that Ted Goodwin told the GBI agent that Goodwin would hold his hands down to prevent him from removing the “exit bag.” In various news stories the allegation almost always referred to an “affidavit” filed by the GBI agent in the sting operation. As much as I tracked the coverage – I never saw any reference to a recording. Eventually in the press, that put the framing in terms of the word of a “persecuting officer” against a harmless old man just trying to help people.
Almost immediately, Ted Goodwin and other members of FEN denied that anyone held anyone’s hands down; some people claimed they just touched people’s hands while others said they never touched the individual whose suicide would be witnessed at all.
GBI has said network members were instructed to buy two new helium tanks and a hood, known as an “exit bag.” In court papers, investigators said the group’s guides would hold down its members’ hands to prevent them from removing the hood — a charge Goodwin vehemently denied.
“We do not hold hands down. We do not cause them to suffer,” he said. “And this will be proven in a court of law — I promise you.” (Emphasis added.)
What we know now – thanks to Frontline – is that Ted Goodwin lied. Repeatedly.
For the first time ever, the GBI tape of the sting was shown. Below is the transcript:
NARRATOR: An agent posing as a man dying of pancreatic cancer had applied to Final Exit Network for help.
GBI AGENT: —expecting a visit from Ted Goodwin of Final Exit Network. The purpose of this visit is to provide assistance in committing suicide.
PENNY PENN: The undercover sting showed what the rest of the— the facts intimated.
GBI AGENT: Want something to drink, Ted?
TED GOODWIN: I just had some water—
PENNY PENN: It was consistent with the training materials. But we actually had the players, the defendants themselves, going through this.
TED GOODWIN: You’re going to have that hood on, and you’re going to be looking at me, probably. And you’re going to be breathing. It feels and smells just like air.
PENNY PENN: You know, I think then that a jury could believe that this is actually how it would happen with other people.
TED GOODWIN: About half the people have the tremor in their arms. So their arms come up. And that’s just muscle reaction. I’m going to make sure your arms don’t tear a hole in that bag. I’m going to hold your arms down.
PENNY PENN: The holding of the hands, though, became something much more sinister and also legally significant than just, you know, the idea that there is this other person, you know, who’s putting their hand on top of that person just to have, you know, some human contact. Here it was that they were actually keeping the person’s hands down or the arms down so that they couldn’t remove the bag.
GBI AGENT: I’m just wondering how you would hold my hands down if I were having involuntary spasms.
TED GOODWIN: Like that.
GBI AGENT: You can do it.
TED GOODWIN: I can do that. Trust me.
NARRATOR: As soon as physical contact was made, agents arrested Ted Goodwin.
The tape is striking – in the last part, Goodwin gives a demonstration of how he would hold the agent’s arms down as the agent is down on the bed. The agent looks like he’s struggling to get his hands up – Goodwin is successful in holding them down.
It gets worse, though. In an earlier exchange with Lawrence Egbert, ex “medical director” of FEN, there’s this disturbing exchange:
Dr. LAWRENCE EGBERT: The point of no return is when a patient pulls it down, and that’s made very clear to them. And I often will say, “Once you pull it down, you’ve made the decision. If you pull— full of helium and you pull this down over your head, you’ll be unconscious between 30 and 60 seconds, and unless you have a very vigorous, strong heart, dead within 8 to 10 minutes.”
When a person dies, then we— we’ll take the bag off. And after we’ve sat for a few minutes that way, if the relatives are there, we’ll ask them explicitly to wait a couple of hours so the body will cool, so that somebody won’t try and resuscitate. If they try and resuscitate right away, they can get a heart— the heart’s very tough and the brain is not so tough. So the heart will start up again. And I’ve seen a person like that, where the heart started up beautifully, normally, but the brain was totally dead. And that, we do— that is the ultimate of disasters.
Frustratingly, the interviewer doesn’t ask for a clarification of what Egbert means when he “makes it clear” that pulling the bag down is the “point of no return.” Does he mean that he won’t let him take the bag off at that point? It’s open for interpretation, with that at the top of my personal list.
So take these elements:
A bunch of secretive suicide-assisting zealots;
A “protocol” that included – at one time at least – holding people’s hands down to prevent them from “accidentally” removing or tearing the helium-filled plastic bag;
At least one FEN member who informed “clients” that pulling the hood over their head was the “point of no return;
And a great concern by Lawrence Egbert that the “ultimate” disaster is the person being resuscitated with a beating heart but a brain that’s dead (I suspect he’d apply that to any brain damage – it’s pretty clear he doesn’t care much about medical accuracy when working in this field.
To top it off, Ted Goodwin states that it’s his duty to “prevent a botched suicide.” He appears unconcerned about maybe killing someone who changed their mind about suicide at the last moment.
And that’s exactly what all of these factors are a recipe for. This group claims that no one has ever changed their mind at the last minute. Given that they claim a body count in the hundreds, that is literally unbelievable. It’s far more likely they don’t give anyone a chance to reconsider at the last minute. And, if true, you end up with something that isn’t suicide at all – and “assistance” has become something even uglier – murder.
Below is an embedded video of “chapter 7” from this Frontline show – it contains most of the material alluded to in this post.
On Tuesday, November 14, PBS aired the Frontline segment “The Suicide Plan” – which focused on the “assisted suicide underground.”
It’s hard for me to judge how this show would have struck the average viewer. I know I need to force myself to review the show for a deeper reaction than I can offer right now, a few minutes after midnight. The upside is that the show is fresh in memory – the downside is that I’m tired and don’t have the time or energy to go back through the show for more detailed comments.
First of all, almost the first half hour of this 90-minute show was taken up with the personal stories of three individuals, two of whom had facilitated suicides as individuals, and a seriously ill woman who was planning to commit suicide with the help, advice and guidance of advisors from Compassion and Choices, the largest assisted suicide organization in the US with a respectable reputation.
Told only by the people involved, the stories are meant to evoke sympathy for the friends and family members who have facilitated the suicides of others – and we’re not encouraged to wonder if there’s more to the story than the obviously self-serving accounts of those involved. Nor are we encouraged to question to the veracity of claims made by Barbara Coombs-Lee of Compassion and Choices that their “counseling” program – “helping people” commit suicide in the 48 states that have not legalized assisted suicide – is strictly limited to people who are terminally ill and that it’s all tightly controlled.
The near-total avoidance of the word “suicide” by the narrator is also a tip-off that the sympathies of the film makers are squarely in the pro-assisted suicide camp.
Nevertheless, a few things that should chill some viewers were shown. One of the most important revelations involved the Georgia Bureau of Investigation (GBI) ‘sting’ operation with the Final Exit Network (FEN), in which a GBI agent posed as a man who claimed to be dying of cancer.
In the accounts of the sting, references were made to the GBI affidavit that claimed then-president of the Final Exit Network Ted Goodwin told the agent that as an “exit guide” he would “hold his hands down” to prevent his hands from “inadvertently” ripping the helium-filled plastic bag off. In interview after interview, FEN members denied allegations that they held people’s hands down.
It turns out it was true. The GBI videotaped it. It’s unfortunate the videotape has gone unmentioned in all the previous coverage of the Georgia case.
It’s getting late and I think I’ll let it rest here. I’ll review the show tomorrow and write more about what the show revealed – intentionally or not.
One final thought, though. This show was – correctly – run with a warning about mature content, etc. in the beginning.
So what genius at PBS labeled this show as falling under the genre “Parent Picks” in the TV listings. It’s shown in the screenshot below:
Have a good night. I think I’m exhausted enough to sleep now. More later.
