AP: Final Exit Network manual calls members “special”

Many people with disabilities have a deep-seated loathing of the word “special.” It’s a term of dismissal, patronization, and discrimination. And that’s just a starting list. Unfortunately until “special education” and “special olympics” get called by other names, we don’t have a prayer of shaking the term off for any length of time with any large group of people.

It turns out there is a group, though, that has embraced its inner specialness.

Early this morning, the Associated Press issued its newest article on the Final Exit Network. I’ve been waiting for this one to hit, since I’ve known for several weeks that it was coming. I was interviewed by Amanda Lee Myers, the reporter who wrote this story.

General comments: This is the best example of real journalism that I’ve seen since this story broke. Myers went to all sources on this. The Final Exit Network (FEN) members get their say. I’m in there to.

But the most powerful “voice” in the article is the FEN’s own training manual. The AP obtained the a police report on the FEN that contained the contents of the training manual. It’s not exactly a public relations officials idea of dream material.

The article has various titles and is in over 130 news sites, according to google. Here’s the one from MSNBC, which doesn’t link to the FEN site:

PHOENIX – A training manual for an assisted-suicide group tells “exit guides” that they are special people and should celebrate their role in guiding others to their deaths.

The lengthy document, referred to by police in the U.S. city of Phoenix as a training manual for the Final Exit Network, offers exit guides step-by-step instructions on how to show others how to kill themselves by breathing in helium. Guides also are told how to dispose of the equipment used in the death and position the bodies so they look like they died of natural causes.

The manual encourages the guides, telling them they are compassionately guiding suffering people to their deaths during “a special time.”

Special people, special times, it’s all just so… special. Wait! There’s more…

“You, as the first responder, are a special person,” the manual says. “You all were attracted to this program because of a compassionate interest … Sometimes that means to ‘hear’ a desperation that the member does not know how to communicate and softly voice it for them.”

‘A sense of celebration’
The manual tells guides that if they’ve planned carefully, they can “anticipate this special day with a sense of peace and celebration.”

Considering the text of the article, my own quotes don’t stand out as extreme, for a change. They’re the same kind of comments I always make, but this time they’re in the context of a real news story instead of a softball treatment of FEN as some kind of “human interest” story:

Stephen Drake of the Rochester, New York-based group Not Dead Yet, which is against assisted suicide, compared Final Exit Network and the wording in its training manual to a cult and said it’s hard to distinguish what the group does from murder.

“What they do is reduce ambivalence,” he said. “I submit that anybody whose conditions for committing suicide is that they have to have someone around them to make sure that they don’t screw it up and they’re not alone is ambivalent. There are lots of people who want to commit suicide and they just do it.”

Just a word about my comment. When I made my remarks about murder, it was in reaction to being told that the manual did contain instructions for holding the hands of the person down after the plastic bag over the head – I don’t remember the exact wording but the idea was that it was necessary to do that so that involuntary movements didn’t end up tearing the bag loose. Obviously, all it takes is one single instance of stopping an purposeful attempt to tear the bag off and “assistance” becomes murder.

They want to be “special”? Personally, I’d call it something else. But please keep them away from short yellow school buses – especially short yellow school buses carrying anyone I know and care about. –Stephen Drake

Must Read: “Schrödinger’s Cat & Donation after Cardiac Death”

I am a fan of Dick Sobsey‘s work and check his blog regularly for his latest news & analysis regarding the abuse of people with disabilities.

His latest blog entry, on What Sorts of People, is concerned with an examination of the logic behind the Donation after Cardiac Death (DCD) protocol. That’s the same protocol, of course, that sparked the publicity in the “near-death experience” of Kaylee Wallace in Toronto earlier this month.

Below is a link and an excerpt from this excellent analysis.

How good is it? Well, my first reaction to reading it was “Damn, I wish I’d written that!”

I don’t react that way often, no matter how much I like an article or essay.

Schrödinger’s Cat & Donation after Cardiac Death

April 17, 2009 — dsobsey

Quantum Ethics: Schrödinger’s Cat & Donation after Cardiac Death

Recent discussions of transplanting hearts from so-called DCD (Donation after Cardiac Death) patients into others (for example the recent Baby Kaylee saga at Toronto’s Hospital for Sick Children) raise serious questions that seem to only have explainable answers in the field of quantum physics. I don’t know if physicist Erwin Schrödinger actually had a living, breathing cat but the hypothetical cat that he proposed to illustrate a paradox back in 1935 to illustrate a paradox has certainly achieved fame.

The paradox that Schrödinger’s hypothetical cat presented was that the cat was simultaneously dead and alive. Schrödinger asked Einstein to imagine that a cat was inside a box and that we could not see or hear or otherwise sense what was happening inside the box. The cats fate is linked to some random event inside the box. Applying the rules of quantum physics the cat is both dead and alive until we can open the box and and directly determine its state. Common sense would suggest that surely the cat is either dead or alive inside the box, whether we know it or not, but applying the rules of quantum physics, the actual state does not come into being until the moment that we measure it. Of course, Schrödinger didn’t actually believe that; he thought the idea made no sense. His real goal was to point out that if this was dumb idea when applied to cats, it might be just as dumb an idea to apply to subatomic particles.

Now, in the 21st century, we appear to applying a Schrödinger’s cat logic to the ethics of organ donation.

Read the rest of the essay here. –Stephen Drake

Update on Kaylee Wallace & Hospital for Sick Children

My apologies for the unexpected short hiatus. I had a few too many offline issues to deal with last week to get to the blog. Barring unforeseen circumstances, the next couple of weeks should be better.

First, an update on Kaylee Wallace. Thanks to the public expressions of concern over her fate and whether or not she was actually “dying,” it looks like Kaylee’s life is on a new track. Here is pretty much the last word we have, from CityNews.ca:

Kayleee Wallace, a two-month-old girl that suffers from Joubert syndrome, was given just days to live. Her mother and father decided that they would donate her heart to another infant in need, one-month-old Baby Lillian.

But when Kaylee was taken off the respirator, the little girl kept breathing – all on her own.

On Sunday, Toronto’s Hospital For Sick Children revealed she was now in stable condition and no longer a potential donor.

Her father, Jason Wallace, spoke of the emotional rollercoaster he and his wife have been on in the past few days.

Earlier in the month, Wallace alleged that the hospital pressured him into making decisions that may not have been in his daughter’s best interest.

They were led to believe Kaylee’s prognosis was hopeless because of her rare brain condition.

Wallace now says he’s content with an apology he received from the hospital and acknowledged the challenges faced by doctors.

“It may be that Joubert is such a confusing syndrome that it confused them, even the best in the world,” Wallace explained.

Readers might have noted that a press release issued by the Canadian Association for Community Living (CACL) noted a history with the Sick Children’s hospital.

That history is revealed in a post at the What Sorts of People Blog. Most of the post is devoted to a press release issued by Barbara and Timothy Farlow, tying the current situation to the death of their own daughter, Annie, in 2005. Here is an excerpt from the release, which can be read in its entirety by clicking here:

Annie Farlow (May 25- Aug 12, 2005)

Annie’s death has led us to question the policies and practices related to the care provided to infants born with certain genetic conditions related to disabilities.

Our daughter Annie had a difficult prenatal diagnosis. We wished to provide treatment and/or surgery for her, only if it was in her best interest. Otherwise, we wished for her to have a dignified death. We met with several doctors before Annie’s birth and were assured of Sickkids’ policies regarding eligibility for surgery and ethical processes.

On August 12, 2005, our daughter died within 24 hours arrival at the Hospital for Sick Children. The events which occurred during those final hours were inexplicably tragic.

  • No call was made to the ICU for an hour when Annie had a respiratory “crash”.
  • A “Do Not Resuscitate Order” was entered without informed consent.
  • Multiple violations in the procurement and documentation of narcotics are acknowledged to have occurred.

For more information on Annie Farlow’s death and the frustrating fight to get answers, please check out www.anniefarlow.com. –Stephen Drake

Ron Seigel: “My Confrontation with Kevorkian’s Lawyer”

Today’s entry – an article by Ron Seigel – seems timely on the 10th anniversary of Kevorkian’s sentencing in the second-degree murder conviction for his televised “execution” of Thomas Youk. Sentencing day was also incarceration day. Kevorkian was taken from the courtroom in handcuffs. But Ron’s article doesn’t stop there. He also discusses some historical medical abuses of infants with disabilities and discusses the social factors that can drive people with disabilities to feel their lives aren’t worth living. Regular readers of this blog will appreciate just how relevant these issues are to recent events covered here.

From Ron’s bio:

Ron Seigel, a seasoned Michigan reporter who has enjoyed national circulation for many of his important articles received his Bachelor of Arts degree from the prestigious Monteith College of Wayne State University, Detroit, Michigan. His many articles have appeared in such newspapers as the Christian Science Monitor, Our Sunday Visitor, Catholic Faith and Family, The Jewish News, the Michigan Citizen, the Detroit News, the Detroit Free Press and the Detroit Legal News. Ron directed United Community Ombudsmen, an organization which assisted community residents in dealing with government institutions.

MY CONFRONTATION WITH KEVORKIAN’S LAWYER

By Ronald Seigel

September 6, 2008

Columnist Leonard Pitts of (The Miami Herald) wrote that he tells journalistic students “if you ever propound an argument, and all the other side can do is to have a tantrum, you can consider yourself the winner by default.” One might add that whenever a reporter asks question and all he gets is a tantrum, it is of utmost importance that he keep asking questions, and consider looking into a few more. I had that experience last year at a press conference Jack Kevorkian held soon after he got out of prison. The tantrum did not come Kevorkian himself, but from his usually mild mannered lawyer, Mayer Morganroth.

In the middle of one of my questions, Morganroth launched Into a tirade, suggesting he did not believe that I was really a freelance writer. He stated that he really felt I was a great imposter engaged in a conspiracy to embarrass his client. He forbade me to say anything further, in effect, preventing me from performing my function as a journalist under the first amendment.

When asking these questions, I made no personal criticisms of Kevorkian himself. My questions merely dealt with the political positions he expressed at the press conference. Since Kevorkian is now running for congress and will undoubtedly attempt to put his ideas into law, it is even more important that these questions be raised.

While Kevorkian was best known for assisting people in committing suicide, he went to jail for going further and actively performing the killing himself. During the press conference Kevorkian advocated legalizing such active killing in order to assure patients “ freedom of choice”

However, he opposed enacting laws that set up regulations or doing so. He wanted the regulations set up by groups of doctors or as he phrased it “ organized medicine” I have no such wish to attack doctors. I have a strong respect for the dedication and intelligence of the doctors I know and those I have been treated by. However, I also have deep reservations about allowing any group of people to operate without legal restraints and become a law unto themselves.

I feel definite alarm about giving people in any profession a License to kill. So during the press conference I raised some Questions about occasions where groups of doctors failed to Behave like platonic philosopher kings or Olympian gods and demonstrated some frightening prejudices. I asked about how scholars and physicians from Georgetown University wrote (New England Journal of Medicine Feb. 25th, 1999) how when doctors were presented with hypothetical cases in a survey, they were unwilling to give the same treatment to Black patients as they were to White patients, and were reluctant to give women the same treatment they were ready to provide for men. African American women came out worse of all.

I also asked how decades ago staff members in one branch of “organized medicine “ the University of Oklahoma health Science, wrote in a national medical magazine (Pediatrics Oct 1983) that they denied life saving treatment to certain babies, because they were following a pseudo mathematical formula designed to “measure” their “quality of life” among the traits determining whether a baby lives or died was their parents! Income.

The American Civil Liberties Union (ACLU) protested such hospitals practices, noting family income could often be a “ proxy for race,” and under such policies children were being allowed to die on the basis of “race and class.”

African Americans have long been concerned about neglect in hospitals. After an experience with her daughter, the late civil rights champion, Fannie Lou Hammer, spoke out against denial of hospital treatment as passionately as she did about denial of voting rights. After my confrontation with Kevorkian’s lawyer, an African American woman told me, “People have to watch out for those who want to disconnect their love ones life supports.” When Kevorkian’s attorney was smearing me, he may have been consciously meant to cover up abuse in medicine. He may have been lashing out because of the unconscious fear that I was opening the door to questions he was psychologically unable to face about the movement that he identified himself with.

Questions might have come up about prejudices doctors have shown against patients with disabilities of all races. Years ago Sondra Diamond wrote about how doctors were reluctant to treat her when she was caught in a fire. Because she was largely paralyzed from birth, the doctors assumed she was incapable of living a “normal life.” Her parents insisted she receive the same routine treatment as other burn patients. She survived and lead a normal enough life to graduate from college, and become an educational consultant.

Tommy Meadows, a former chair of the Detroit City Council Task Force on Disabilities said one doctor was reluctant to treat his wife, Shereian, because he did not like the way she looked. Then the doctor doubted she was worth keeping alive, because he considered her “deformed.” It might have also came out that the distinguished American Medical Association (AMA), which is close as anything in This country to organized medicine, wanted to sacrifice Kevorkian’s scared principle of freedom of choice for those who want to live.

In a 1996 resolution, AMA members declared they wanted to “accommodate” doctors, who wished to deny life saving treatment, when they believed a patient did not have a “worth-the-effort” quality of life. In such cases, the AMA advocated giving hospital appointed ethical boards the power to overrule patients and their families.

They advocated board members determine the value of a patient’s Life by “ subjective values.” There is one word for “subjective value” And this is prejudice. AMA style ethical boards could make this a far more dangerous world for victims of prejudice, whether those with disabilities, African Americans and women, particularly those like Shereian Meadows, who may fail to live up to their “subjective” standards of beauty. One wonder who would be safe.

Tommy Meadows noted, “Today we’re fighting for us. Tomorrow we may be fighting for you. If you don’t stand with us today, who Will stand with you tomorrow? This raises a more fundamental question. If prominent figures in organized medicine are willing to disregard patient choices in regard to saving their lives, how can we trust them to respect patients freedom of choice when they are allowed to make the rules for active killing?

This might give rise to an ultimate question on the nature of the so-called “rights to die” movement. I patients wishes can be set aside so easily, might not “freedom of choice” simply be a code word for getting rid of lives that some do not want around? How far is this talk of “quality of life” an attempt to subvert the principle on which this nation was founded that all men are created equal? Is this an attempt to replace this with a doctrine that there are some inferior quality second and third class, Grade, B, C, and D lives that is all right to destroy?

How far are attempts to whittle away the long held safeguards that protects human life sabotaging our guarantees of equal protection of the law? For the past decade I and other disability rights advocates have been trying to head off the AMA’s master plan by working for a passage of a law making involuntary active and involuntary passive euthanasia hate crimes, when committed by health care institutions or providers receiving federal funds and done because of disability, race, religion, ethnicity, gender or sexual orientation. It would also define as hate crimes acts of brutality and cruelty in hospitals and nursing homes. The Bill is called the Shereian Meadows Amendment.

Those journalists who are allowed to attend Kevorkian’s press Conferences might well ask him how he stands on this issue of freedom of choice. Readers might want to write or e-mail their Senator, or Representatives, and ask the same. One hopes we will also ask ourselves the most important question of all. Is this arrogant elitism in our institutions of healing a symptom of malady in our society? The late Rosa Parks said before her death that we must “respect and care for each other” if we are to “live and be free.” Do we all receive respect and caring?

Certainly most of us do not have to convince special ethical boards of value of our lives. However we do have to struggle for acceptance, whether in school playgrounds, teen-age cliques, in getting and keeping a job, “Keeping up with the Joneses,” or maintaining our dignity in old age homes. Some find it difficult to gain acceptance in their own families.

Often we feel the only way we can gain acceptance and respect is by putting others down. In such atmosphere, is it not easy to discount the worth of others, and see their lives expendable? In such an atmosphere, some come to reject themselves and feel that their own lives are worthless. How many of the “voluntary” suicides Kevorkian talks about might caused less by the physical pain or suffering of illness than by the emotional pain and suffering of society’s rejection, and self-rejection?

Note: this was originally published on a site named newswithviews.com – Ron cannot get a Michigan newspaper to accept an article about Kevorkian from. Evidently, having reporters ask hard questions at a Kevorkian press party is considered to be in pretty poor taste and the papers don’t want to encourage the practice. –Stephen Drake

I’m Doing the Fun*Run to Support ADAPT and Disability Rights

On April 26th, ADAPT will be holding its annual Fun*Run in Upper Senate Park in Washington, DC. I won’t be going to the national action or at Upper Senate Park, but I have signed up to do ten laps around a large block in my neighborhood on that day.

For readers of this blog unfamiliar with ADAPT, here’s a brief overview (copied and edited from ADAPT site):

For over 25 years, ADAPT has been a leader in the fight for accessible public transportation, the redirection of public funds from nursing homes and institutions to community-based services, and for a national personal assistance policy based on functional need, not diagnosis.

ADAPT strategies include using civil disobedience as a tool to garner public attention and effect needed change in the laws, policies, and services affecting persons with disabilities. While members of ADAPT are willing to sit at the table to change policy, we are not afraid to go to jail—if that’s what it takes for change to occur.

Direct Action works and is a necessary technique for making positive change for communities that are marginalized by discrimination and pity. Chaining ourselves to buses resulted in accessibility in city transportation. Due to ADAPT’s earliest efforts, Denver had 100% accessible mass transit prior to the passage of the 1990 Americans with Disabilities Act. The same is true in other cities where citizens used direct action to demand equality.

ADAPT’s demonstrations, protests and marches have had a significant impact on the redistribution of Medicaid dollars in long-term care. Just 10 years ago, more than 80% of long-term care dollars went to nursing homes. Today it’s less than 70%, which has resulted in great numbers of people with disabilities being freed from institutional settings. It is time to assure that ALL our brothers and sisters have that same opportunity for freedom.

About sponsoring me for the Fun*Run:

Please go to the following link, which will allow you to pledge an amount per lap or pledge a flat amount.

And, in case you are wondering, your sponsorship will benefit Not Dead Yet. Details are at my sponsorship site. –Stephen Drake

PS — If you’re making a pledge, keep in mind that I have committed to do TEN laps. That is the number you should use to figure your pledge if you want to pledge per lap.