The last taboo

Assisted suicide, a teen who becomes a quadriplegic after an accident dealt with in a British TV show. This article says in American TV this topic is the last taboo and the plot would have been written differently. Interesting read.

The last taboo

Disability and Health Journal, Vol 3, Issue 1 (January 2010) free online

The January 2010 issue of the Disability and Health Journal, A Disability Perspective on the issue of Physician Assisted Suicide, pages 1 through 70, is available free online.

It includes articles by Diane Coleman and Carol Gill, among others.

House of Lords defeats assisted dying bill

via BBC News:

A move to make it legal to help a terminally ill person to die has been defeated in the House of Lords.

The measure would have removed the threat of prosecution from those who go abroad to help an "assisted suicide".

...

The Care Not Killing Alliance, an umbrella group of doctors and organisations opposed to changing the law, labelled the amendment "dangerous".

They argued it runs the risk of vulnerable people being pushed into going to clinics like Dignitas against their will.

The danger of denying history

In all, between 200,000 and 250,000 mentally and physically handicapped persons were murdered from 1939 to 1945 under the T-4 and other "euthanasia" programs.

This was referred to as murder of the unfit.

Forced sterilization of persons who suffered from diseases considered hereditary, such as mental illness (schizophrenia and manic depression), retardation ("congenital feeble-mindedness"), physical deformity, epilepsy, blindness, deafness, and severe alcoholism was the forerunner of eugenics. Killing those who were a burden on society was used to justify " the systematic killing of the mentally ill and the handicapped. In October 1939, Hitler himself initiated a decree which empowered physicians to grant a "mercy death" to "patients considered incurable," not to alleviate suffering but to cleanse the Aryan race by eradicating those considered to be genetically defective.

After I read Meredith Gould's blog over the past week and what she refers to as the Williamson snafu, and the "toxic, pernicious and woefully durable nature of anti-Semitism and anti-Judaism", I spoke to her about my need to join in solidarity and speak up about how this is a larger issue, one about how we treat human beings.

When Meredith writes that Williamson has said out loud what far too many others think privately relative to the Shoah and Jews , I think of the reactions I get when I write about disability and eugenics and disability and laws for assisted suicide. There is a great deal of denial about what is going on.

Stephen Drake over at Not Dead Yet writes that the worldwide euthanasia movement doesn't have an interest in limiting "eligibility" for euthanasia or assisted suicide to people who are "terminally ill," but typically introduce legislation as a "door-opening" strategy. In fact, here in the U.S. the latest move - in New Hampshire - is an attempt to redefine "terminal condition" to encompass any "incurable" condition that will result in "premature death."

The word "incurable" was applied to disabled people during the Holocaust. As Stephen Drake points out, having any kind of spinal cord injury lowers one's life expectancy so yours truly would be included, and this language would include many disabled people.

Those who deny the Holocast deny the history and the truth of those who suffered and died. Worse yet, they deny the ongoing and "woefully durable" anti-Semitism and - yes - ableism that dehumanizes people and devalues their lives.


[image description: Taken from Chewing the Fat, it shows the symbol worn by those with disabilities in the concentration camps. It is a ' black triangle (for asocial) with a white strip of cloth with the word BLOD (stupid) written on it'.]

NH Legislature proposed redefinition of terminally ill

Over at Not Dead Yet, a post about a proposed change of language in assisted suicide- redefining terminally ill to terminal conditions- a change due to be discussed next week.
From the Not Dead Yet site:

A link to HB 304 - AN ACT relative to death with dignity for certain persons suffering from a terminal condition.

Definition of "terminal condition":

XIII. “Terminal condition” means an incurable and irreversible condition, for the end stage of which there is no known treatment which will alter its course to death, and which, in the opinion of the attending physician and consulting physician competent in that disease category, will result in premature death.

Read that definition carefully, terminality is defined as having a condition that is irreversible and will result in a premature death. My partner would fit that definition. Many people I work with also fit the definition.

None of them are dying.

For more, click on the above link.

Death by assisted suicide to be aired in UK

A British television channel said Wednesday it plans to show the suicide of an American man at a Swiss clinic, a broadcast criticized as an insensitive stunt by opponents of assisted suicide.

The death of 59-year-old Craig Ewert in 2006 was scheduled to be shown Wednesday evening in a documentary on the Sky Real Lives digital channel.

Ewert had degenerative motor neuron disease and died at a clinic in Zurich run by the assisted suicide group Dignitas, with his wife Mary at his side. Assisted suicide is legal in Switzerland in some circumstances and various organizations there provide suicide services.

via NYTimes.com

The parents of Daniel James, the paralyzed rugy player who committed assisted suicide, will not be charged, it was decided Tuesday. The 23 year old is reportedly the "youngest Briton" to use Dignitas.

See also Liz Carr's Dying for a disabled Role Model

The vast amount of publicity given to the pro-euthanasia lobby, however, would seem to suggest that it's the majority of us who want to book a one-way ticket to Switzerland. This unapologetic bias only serves to misrepresent millions of disabled peoples' lives.

In our society, the prevailing view of illness and disability is that they're a tragedy and thus the decision to die is often seen as entirely rational, inevitable and even brave. Rarely is this status quo challenged but instead the majority of press reports reinforce it. We are forever hearing about the campaign to assist people to die with dignity, for example, but what about the equally compelling campaign to assist people to live with dignity? Balanced media coverage of this issue is not just essential, it's a matter of life and death.

I couldn't agree more that the highly publicized cases serve to support assumptions and myths that living with a disability is a "half life", a "punishment" or a fate worse than death. Rubbish. There are so many of us living with disability who don't feel that way - and yet, as Liz writes, our stories are not heard and certainly not represented in the media. Nor is attention being paid to the very real needs of those who want to live with disability. And that is something I've blogged about often and will continue to.

Woman opts for assisted suicide rather than nursing home

A German case of assisted suicide is drawing attention because the woman who requested it was not in intractable pain or dying.

Ms. Schardt was 79 years old and healthy at the time she sought out Mr. Kusch to seek out help for assisted suicide. She did not want to go into a nursing home.

While Ms. Schardt was not suffering from a life-threatening disease, or in acute pain, her life was hardly pleasant, Mr. Kusch said. She had trouble moving around her apartment, where she lived alone. Having never married, she had no family. She also had few friends, and rarely ventured out.

In such circumstances, a nursing home seemed likely to be the next stop. And for Ms. Schardt, who Mr. Kusch said feared strangers and had a low tolerance for those less clever than she was, that was an unbearable prospect.

...

On Friday, Bavaria and four other German states will push for new laws to ban commercial ventures that help people kill themselves. Suicide itself is not a crime, nor is aiding a suicide, provided it does not cross the line into euthanasia, or mercy killing.

via NYTimes.com

It is important to note that nearby Switzerland has liberal euthanasia laws which has led nearly 500 Germans to cross the border.

Kusch, a German politician who has designed a one button push suicide machine, planned it out carefully to stay within the law.

I came to her apartment in Würzburg at about 11 o'clock last Saturday morning,” Mr Kusch, who has no medical training, said. Within half an hour she was preparing the suicide cocktail, he said. Mr Kusch then left the room. When he returned after three hours, Bettina S was dead. The exact procedures used by Mr Kusch were important, designed to keep him within the law and to demonstrate that people could help someone to die without risking jail. via timesonline.co.uk

This is a case that illustrates the dangers of euthanasia and assisted suicide for those who are most vulnerable, where these measures can turn them into expendable people. It is a case that teaches us about what happens when societies fail to provide adequate options to live.

Assisted suicide a sign of the broken medical system...

..an article by a member of the disability community.

Oregon State Board of Nursing protected nurses over patients...

Not Dead Yet reports about nurses stealing drugs from patients and two cases where nurses "assisted" a patient with suicide, although family members doubt any request was made by the patient.

They quote from the Portland Tribune article by Peter Korn, which states:

"In some cases, nurses in the monitoring program were allowed to continue in their jobs even after multiple instances of stealing medications from patients.

The state report issued Wednesday supported the Tribune’s stories and found even more problems. According to the report, even cases of alleged sex abuse and attempted rape that came before the nursing board were not referred to criminal
authorities.

And, the report found, the nurse monitoring program “does not protect the public as effectively as it protects a participant’s license to practice.”

Click above for their post.

Largest Euthanasia and assisted suicide symposium...

..scheduled November 30 in Toronto .

"Nearly every leader and significant speaker on the issues of euthanasia and assisted suicide will be attending the International Symposium on Euthanasia "Current Issues and Future Directions" to be held Friday, Nov 30th, Saturday, Dec 1, 2007 at the Four Points Sheraton - Toronto Airport Hotel.

Organized by the Euthanasia Prevention Coalition - Canada and co-sponsored by: Co-Sponsored by: Euthanasia Prevention Coalition - Canada, NOT DEAD YET - USA, Compassionate Healthcare Network - Canada, Physicians for Compassionate Care - USA, Vermont Alliance for Ethical Healthcare - Vermont, Care NOT Killing Alliance - UK, No Less Human, UK."

Via lifesite.net

Speakers include Wesley Smith, Diane Coleman, Stephen Drake and Terri Schindler's brother Bobby. For more information, click above.

The role of the disability community in defeating California assisted suicide bill..

..is explored in this article. Saw this in my news server this morning.

"The Los Angeles Times profiled the impact of the disabled rights activists and Paul Longmore, a history professor at San Francisco State and a member of the community, said disabled Californians played a big role.

Disabled people, Longmore said, "probably even more than most other citizens, understand the kind of suffering and needless pain that's inflicted on a lot of people and leaves some of them to prefer to die when they can't get the help they need."

Via LifeNews.com

And a hat tip to Penny Richards over at DisStudies Temple U, who blogs about the original LA Times article in which Longmore states:

""HMOs are denying access to healthcare and hastening people's deaths already," said Paul Longmore, a history professor at San Francisco State and a pioneer in the historical study of disability. "Our concern is not just how this will affect us. Given the way the U.S. healthcare system is getting increasingly unjust and even savage, I don't think this system could be trusted to implement such a system equitably, or confine it to people who are immediately terminally ill." Via LA Times

A senator noted that the two main groups opposing the legislation were the disability community and Catholics.

"The Right to Life and Human Dignity" by Leon Kass

..over at the New Atlantis (click above to read the entire article).

He writes:

"Nevertheless, Hobbes seems to me perfectly right to insist on the foundational importance of an individuated human life, and in worrying about the dangers to decency and dignity in making light of the right to life. Those who would, even today, be inclined to disagree, should ponder the human meaning of those seemingly loftier moral outlooks that deny the right to life—outlooks that push millions into gas chambers in order to improve the race, that brutalize and liquidate dissidents in preparation of the coming classless society, that dispatch the elderly and the handicapped newborn, or abort the genetically infirm, in the name of “quality of life,” that call upon doctors to deliver, with the state’s blessing, “death with dignity,” and that mutilate and blow up innocent civilians, all for the glory of God. Hobbes would call this unnatural and crazy, and a denial of natural right. So should we. We must also call it an assault on human dignity."

Well worth reading as it applies to issues of "right to die" , "death with dignity" and assisted suicide laws and futile care laws .

Anniversary of Olmstead decision

Kay over at The Gimp Parade points out that today is the anniversary of the Olmstead decision and writes about it and the "right to die" in a post you shouldn't miss (click above). She writes about Larry McAfee and his wish to die until advocates helped him set up a life outside of institutions, among other topics.

One of her links is to an article from a member of ADAPT:

"No matter what others or you think about our quality in life; we deserve what we think of life based on qualities decided by those of us who live our lives, in our bodies according to our own situations and circumstance. You may not be able to understand because you do not yet need the assistance of others and that is fine. Those of us who do need the help of others deserve to get that help where we determine and in the way that best enables us to lives of health and happiness.
...On that day when you or a family member needs what we have set up as choice for all, you will praise us and thank God that others have made this determined effort; that many battled when others told us to accept that "that's just the way it is." Hopefully soon you will side with our efforts and come to understand that what we do is for the freedom, in posterity, for every child born American. Perhaps even what we accomplish here will serve as precedent for every other country of the world, and perhaps they will follow in suit to take care the needs of the whole population, and people everywhere will forever be free from life in institutions. Praise God, let it be so."
-Zen Garcia

"A face to face with " Kevorkian

Via the Detroit Free Press - an interview by Mitch Albom of Jack Kevorkian. He writes:

"So when Kevorkian sat down across from me, I was ready to empathize with his compassion for the sick.
I was not ready for the man himself."


Click above to read the rest.

"Let the cripples demonstrate"

[visual description: Jack Kevorkian at a press conference on Tuesday after his recent release from jail.]

sayeth recently freed Jack Kevorkian according to a news report in the Detroit Free Press which describes Kevorkian's reaction to Not Dead Yet, a disability advocates group and their efforts to make their opposition to assisted suiciide known through legal demonstrations.

It's sad that Kevorkian gets to use the media to belittle legitimate efforts by disability advocates through name calling. This kind of behavior has been coming from the right to die folks since his release (if you click assisted suicide, you'll see an opinion column by Russell Shaw that falls in this category as well).

But Kevorkian gets to make his point.

What are they so afraid of that they stoop to name calling and belittling disability advocates? It's because they do not want to address the legitimate arguments that are being raised as to the disproportionate number of assisted suicides Kevorkian did on people with disabilities, not with terminal illnesses. Instead of addressing this issue in public appearances, such as press conferences and his recent interview with Mike Wallace, Kevorkian instead tries to dismiss groups like Not Dead Yet via an old school yard trick - name calling....

...to make his point.

It's a very telling tactic. Language and disability (see my label below) reveals a lot about how people think. It can uncover attitudes or cause them. I'm not sure that Jack Kevorkian understands that some disabled people aren't bothered by the word cripples. Some are bothered by it when its used by able bodied people. Most,if not all, are bothered by it when it's used with negative connotations behind it...

....to make his point.

We should all, able bodied and disabled, be bothered by the use of language like cripples when it's used with the motive to demean disabled people. Maybe this kind of language is still okay in this country because, let's face it, it's used every day. .

Although maybe by using it publicly, without meaning to, Kevorkian is helping to make our point.

Assisted suicide bill fails in California

Disability advocates and other groups have been active in preventing the legalization of assisted suicide. A bill proposed in California did not move forward due to their efforts and work. Advocates noted that legalized assisted suicide is a bad mix along with for profit medical care for many disabled and poor people.

Via SDS list serve

"Autopsies performed revealed that more than half of Kevorkian's 130 known victims were not terminally ill. Most were disabled with conditions such as multiple sclerosis. In fact, several had no serious physical illnesses that could be determined upon autopsy."
-Wesley J. Smith

A Matter of Llfe and Death

Hat tip to the Gimp Parade for this link.

In his opinion column (click above), Russell Shaw tells us disabled folks to "get over" our "fear" of the right to die types. He writes:

"Could the real issue for some disability advocates be that ongoing life experiences have convinced you that able-bodied citizens feel you are "in the way," and that right-to-die types have as the ultimate goal more tools to get you, our disabled brothers and sisters, "out of the way?" and goes on to state that he sees our stance as a bit paranoid.

I'm glad you asked that question, Russell. Too bad you went ahead and tried to answer it before talking to any disability advocates. But let's talk about the real reasons why people with disabilities say they want to die and then let's take a look at if they really want to die - or live. This is the distinction that many who use the "p" word don't "get".

Over the years I've worked with many people with disabilities who tell me they want to die. There's no doubt that these cases have one thing in common: they did not want to die because they were in physical pain or facing a terminal illness. They wanted to die because they did not have the means and resources to have a manageable life. Some wanted to die because they were newly disabled and were going through depression. Others feared being a burden to relatives. Some lost all of their money and were unable to work and find a job.

Some of the disabled people who approach me who say they want to die tell me that they have no quality of life. Simple things like having meals on the table are a problem. They may survive by eating bags of potato chips. It's a John Smith type of existence: if you can't cook or prepare a meal and there's no one to do it for you, you don't eat. Or they may go without showers for weeks at a time. One woman I know doesn't get her laundry done for months on end. There is a shortage of both funding and availability of home health aides so many people with disabilities live like this. It's behind closed doors.

Even though this is a reason why people with disabilities want to die, some people respond by saying that if you "can't manage by yourself, you should go into a nursing home." . That's even worse. It's a loss of autonomy and freedom. To many disabled people, it's the line that is crossed when suicide becomes the choice and they tell me "If that ever happens to me, I don't want to live."

Then we have people who say they want to die because they cannot get out of their homes because there have been In Home medical equipment restrictions or they can't afford medical equipment. Their wheelchair breaks and they can't get another one so they are immobile. This leads to depression. Perhaps their caregiver is an aging parent who can no longer care for them - or dies. All of these changes make disabled peoples' lives unmanageable and can make suicide look like a way out.

People with disabilities are far more vulnerable to right to die laws because they can be talked into suicide under the guise of compassionate care (or whatever politically correct term du jour is being used). Here's where we get into the supposed paranoid part - whether anyone wants to admit it or not, due to the cost of care it is cheaper and far easier to talk a person with a long term disability into legal suicide . "Sign here- and all those logistical problems go away."

What needs to be understood is that what these people with disabilities who ask to die are looking for are the resources so they can live. We need a right to live movement, not a right to die movement. We need to solve this myriad of social problems, not provide an "out" for a vulnerable population that can be used by them and - yes- manipulated by others.

I find it sad that people like Shaw use their public forum to ridicule disability advocates. But I'll be the bigger person here and suggest that a dialogue is possible. We need to address the erroneous assumptions out there in the public forum about our stand on assisted suicide vis a vis people with disabilities.

It's a matter of life and death.

"Regarding Kevorkian"

from over at The Gimp Parade, a post by Kay (who says it better than I could) about how a misleading poll was done, the reaction of Not Dead Yet, and how Kevorkian's release is viewed by various groups.

Copy of Pope's new book auctioned - proceeds go to paralyzed man

The equivalent of $8000 was raised to help a paralyzed man in Poland who had asked for assisted suicide. Arrangements have been made to donate proceeds from each copy of Jesus of Nazareth sold in May toward his fund. The man no longer wants to die.

This story once again highlights the confusion that goes on around the topics of assisted suicide and euthanasia for people with disabilities. Often the lack of resources, poverty and accompanying despair are the reasons why some people ask for assisted suicide when their condition is not terminal. Who would want to live if that's the future one faces?

We need to look at the conditions that cause people with disabilities to ask for assisted suicide and work to remedy those conditions rather than considering these lives disposable.

"Since 1983, many people with disabilities have opposed the assisted suicide and euthanasia movement. Though often described as compassionate, legalized medical killing is really about a deadly double standard for people with severe disabilities, including both conditions that are labeled terminal and those that are not."

- from the website of Not Dead Yet