Until the next round of court appearances and/or criminal charges comes round, I think what we’re going to be seeing is a steady trickle of stories of people who either committed suicide – or want to – with the “help” of Final Exit Network (FEN). Predictably, with few exceptions, the surviving family members will defend the Final Exit Network, having already told their “loved one” that they were “accepting” of the suicide. (Note: there has been one exception to that trend – and I’ll probably get to write about that tomorrow)
The latest entry in that line of stories comes today, published in the Detroit News. It tells the story of the planned suicide of Maxine Poris – through the accounts of FEN members, her correspondence, and her “accepting” daughters.
Anyone reading with a critical eye can read a story of a woman dealing with the pain and depression that is part of fibromyalgia – and someone who appears to have been pretty isolated. In a story like this, we’re not allowed to ask what other kinds of treatments or supports might have helped her live her life, since we are not allowed to ask the dead if maybe they hadn’t really run out of options, after all. Nor are we allowed to ask how hard her daughters talked against her decision or denied the idea that she would be a “burden” on them if she lived with one of them.
Here is a link to the story, along with a quote that AP reporter Greg Blustein must have saved from a previous interview with me. I don’t recall saying this exactly this way, since the subject was suicide and not killing – or outright killing, anyway. But Blustein has the notes and it’s not something I disagree with:
Final Exit’s critics are many. “Instead of dealing with ways to support” the sick and the disabled, “we can pat ourselves on the back and say we’re compassionate and kill them,” said Stephen Drake of Not Dead Yet, an advocacy group for the disabled that opposes assisted suicide and euthanasia.
This could be a long and nasty ride – and just beginning. –Stephen Drake
I have to be honest, I do not walk a hard line with regards to end of life issues. However, this story really got me. I realize pain is an awful, horrible thing to loive with day in and day out but is it worth teaching someone how to commit suicide?
I went to FEN website and their “support” is mainly given through internet and telephone – nothing face to face!! How can they determine whether or not someone is legit? Are they kidding? I don’t like Kevorkian but at least he had the decency to show up. I’m still in shock about this article and their tactics.
kim,
first of all, there’s little evidence that “pain” is the major factor driving people to suicide – and that applies equally to Kevorkian, Oregon and the Final Exit Network.
Numerous studies of both Kevorkian and Oregon puts “pain” low on the list of people wanting suicide – items such as “fear of being a burden” come much higher on the list.
FEN’s criterion has always been “suffering” which many people interpret as “physical pain” – if you read the website carefully, you will see they don’t limit their “services” to those in physical pain at all. –Stephen Drake
No thinking person could hope to understand Maxine Poris’ suffering, or her decision to end it, only Ms. Poris possibly could. Yet NDY denies her reality, judges her decision, and condemns her family.
In response to Kim H, Stephen Drake implies that mental pain is somehow invalid compared to physical (it isn’t). NDY implies that all mental pain is treatable (it isn’t). NDY implies that support is available to the suffering (it isn’t).
I too am concerned about being a burden to my family. Should I become incapacitated, I don’t want my niece to get trapped spending years of her life scraping my shit off my sheets.
NDY has writers much more clever than I, yet for all their cleverness they have a very strange, vast gap in comprehension. If you’d like to relabel your own miserable lives as worth living, knock yourselves out. Back here in reality, where NDY so often chooses not to tread, there really are lives not worth living; there really is suffering that can not be eased, only ended.
As one who suffers from constant, chronic level 8 pain on on a daily basis, I’m qualified to say pain is hell. However, pain is also very *treatable.* With the aid of my doctors and a good support system, I live a good, full life. I won’t lie: I *do* worry about being a burden; but I also know that I am loved and needed in my small world.
When I read the original article, I, too, found a story of an isolated, depressed woman — not a terminally ill one. FEN doesn’t make distinctions between suffering and terminally ill. There was no reason for FEN to swoop in and help her commit “suicide.” There *was* reason for someone to swoop in and help her come to terms with her condition and treat her depression and lessen her isolation. That, too, would’ve ended her suffering.
NDY has opened my eyes to FEN’s true goals. Every time I read a new post, I get angrier and wish I were in a space to do more than comment. As a Disabled person, I don’t want any organization, government or person to be able to decide my life is without hope or value.
K Rigney
Marjery,
It’s a real treat for me when people like you write and comment here. You don’t bother with the phony veneer and let it all hang it out – letting us people with disabilities know what you think of our “own miserable lives.” So refreshing to talk to somebody who is honest.
We haven’t missed a thing. Judging from the thousands of people who successfully commit suicide each year, obviously there are people who come to a firm decision that their life isn’t worth living – for a variety of reasons.
Anyone who refuses to commit suicide unless certain ideal conditions are met is obviously ambivalent – or they’d just do it like the thousands of others. They’re looking for someone to tell them if it’s the right thing or wrong thing for them to do, to make sure they don’t screw it up, etc.
That’s not about “autonomy” – it’s about handing yourself to someone else’s judgment about your life.
K Rigney,
Thank you very much for your comment. I would really like to post this on the blog instead of keeping it in the “comment” section. –Stephen
“People like me”? I guess that would be honest people…are we rare in this neighborhood?
I have read a few of your articles, but I had no idea you were a person with disabilities (guess I missed your biography). Yet you concluded with ironclad certainty that my “miserable lives” comment was directed at persons with disabilities. Given my ignorance of your condition, it could not have been. What bias on your part made you think it was? How distorted your perception must be, to see this offense where there was none. Distorted perceptions do not often co-exist with sound reasoning.
My “miserable lives” comment was actually a more general put-down, directed at “people like you” who work to deny mercy to those who are begging for it.
I am glad “anonymous” who has pain, addressed the issue:our society has a problem, that is, fear: if someone gets enough pain meds, they might become an addict. This was not really funny when my mother had great pain with shingles and they feared the 93 year old woman would become addicted to painkillers!
Margery W.’s comment “hits” a theme I have heard a lot and it saddens me. When the great Sen. Eugene McCarthy was near the end of his life, not long ago, in a “facility”, he was said, to have said, by the press obit report (note my qualifying:did he say it?), that “he didn’t want to be a burden to his family” so he went into an institution. A nurse, who was Kevorkian’s #35, who lived in MA, killed herself, with his “help” because she had severe CFS (I have that disabling illness.) and she “didn’t want to be a burden on her family”, so asked Kevorkian for help, the press said.
It’s time “being a burden” is looked at.
Many of us have taken care of babies. We saw it as part of the life cycle. It’s sad, and true, that many families can not deal with, and people don’t have family present nor willing, to do supervision of care (I repeat:supervision of care), attendant and, as necessary, nursing care for an elderly or severely disabled relative in their own homes/apartment.
So the dialog gets switched from, “who will take care of people who need help?” to “I don’t want to be a burden.”. Our society switches a societal obligation to personal problem. You can list the areas the same “switch” takes place: wheelchair access becomes “challenge” to those of us who need a wheelchair, but can’t get up a flight up steps, into a toilet stall, etc., as well as attendant care at home. So much, I will guess, is based on MONEY. The society/government does not want to pay benefits. Some families with money “dump” relatives, including children, so it’s not only about money.
As the world economic crisis expands, I expect more pressure to get rid of people who can’t be exploited, such as exploited by being soldiers, cheap labor, people who are ill. I noticed that many disabled people are exploited labor, but that’s for another place.
Notions of humanity need to be revised again and again. PS I started looking at the “characters in the picture” since a comment mentioned it; this one is “handwe”. How apt.
Marjery W.,
No, when I say “people like you,” I mean people whose total contempt for people with disabilities is open and undisguised. But maybe I’m being unfair – maybe you’re just incredibly dense – none of the material, the logo,etc. sparked a connection with disability with you. Perhaps you should try actually understanding the people and the stances you’re attempting to argue against before banging away at the keyboard. –Stephen Drake
Marjery,
I have lived over half my life with multiple disabilities that cause all manner of severe pain, including fibromyalgia. So what I say here is not some blithe ignorant conclusion, or some nasty wish to deprive others of their liberties.
Like many other people who live with everyday pain and other impairments, I would say that the worst pain of all is the pain of knowing that this society does not bother to create and sustain a comprehensive social safety net for people like us.
to treat us as the full fledged human beings of dignity and worth we are whether you or anyone else thinks so or not.
It sounds as if you are saying that being incontinent and needing the help of others to keep yourself clean is literally a fate worse than death, and somehow inherently degrading to you and your caregiver.
things like pain, incontinence, and needing the assistance of others, while not exactly fun, are not degradations in and of themselves.
they are *made into* indignities by a culture which dictates that only physically
perfect, money making, completely self-reliant individuals can live good and fully human lives. which wants to cut out the whole rainbow of human diversity.
one corollary of this: it’s “shit work” to help others with their basic bodily needs.
another corollary: people who don’t measure up are “less than” and expendable–even to the point of being killed through human agency.
disabled people, and their loved ones and caregivers, have to live in the face of these intense prejudices every day.
i am immensely suspicious that the only “right” that we disabled people seem to be handed on a silver platter is the ‘right” to remove our “disgusting” selves from existence itself. To put ourselves permanently where we don’t “bother” or “burden” anybody with our icky, repulsive, evil needs.
i’d take a fibromyalgia flareup over living in the face of this kind of bigotry any day! the pressures shaping the wishes of some disabled people to kill themselves are just as much bigotry as internalized racism or homophobia that influences black or lgbt people to kill themselves.
if you want to really care for disabled people, then do everything you can to help us *live*– and to live the abundant as possible lives we are capable of, just as much any other human beings.