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Tremors of Intent

Let the Crippled People Demonstrate

Jun 06 10:11

Oh that rascally Jack Kevorkian! Out of prison for the first time in eight years, he’s making the media rounds and already baiting good people everywhere who think he’s a ghoul. Just yesterday he held a press conference at the Skyline Club in Southfield, Mich. When told that members of the disability rights group, Not Dead Yet, showed up to protest, he said, “Let the crippled people demonstrate!”  

Hey Jack, that ain’t right. You didn’t use people-first language, you schmuck!

I know, I know … just yesterday I suggested our community has bigger fish to fry than Kevorkian, who is so beyond the pale that all but the most extreme of the right-to-die advocates keep him at two-arm’s lengths (except for 60 Minutes’ Mike Wallace, who gave Kevorkian a big hug after his release from jail … but you have to excuse Wallace, he’s a journalist. You know how those folks are). But, in a thoroughly ghoulish way, Kevorkian’s funny. And that makes him fun to write about. So I hope we keep engaging him for a while.

Well, he’s funny now, since the plug’s been pulled on his death machine. Did you know he once fancied himself an artist in addition to being Dr. Death? It’s true. For one of his paintings, titled “Genocide,” it’s said he used his own blood to stain the frame. Ewwwwww …  

Meanwhile, I want to give NDY’s Diane Coleman, who is hands-down one of the most intelligent people I ever met, the last word on Jack. Quoted in Detroit’s Free Press, Coleman points out that some of the people Kevorkian “assisted” weren’t even terminally ill and, instead of mental health services, got the death machine. “They were denied their rights to suicide prevention that would have been given to people without disabilities," Coleman said.

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1. flying blind | Jun 06 12:46

The New England Journal of Medicine said 70+% of Kevorkian's 130 victims weren't terminally ill. Physician Aid in Dying (PAD) legislation just died in California (CA). It was opposed by many state and national disability organizations, Hispanic groups, the CA Medical Association, state and national Hospice Associations. Legal alternatives exist, like withdrawing treatment and palliative sedation. There's no way to determine if depression and abuse are driving patient decisions. Oregon reports that 42% of those using PAD in 2005 gave "Burden on family, friends/caregivers" as a reason. Only 24% cited "Inadequate pain control, or concern about it." Disability rights advocates fear the Oregon law leads people to feel they have a "duty to die" and not be a burden. "No matter what so-called 'protections' are... the most vulnerable will be open to pressures of an earlier death...." Angel Luevano, CA League of United Latin American Citizens Let's advocate for quality health care, not PAD.

2. presslord | Jun 06 09:32

"...some middle ground for us between the kevorkians on one extreme and the NDY types on the other." "Please don't kill me..." is an extreme position?!?!?!?!?! I'm a middle aged (48),white, balding real estate developer with a wife, two teenagers in private school and an a suffocating mortgage....I'm about as un-extreme as you can get...I'm also a crip...and would just as soon not be killed over it...

3. ParaDude | Jun 06 12:16

If one actually thinks society wants you dead then one needs to come to the realization that they have much more important things to worry about and should consider councelling

4. Rwood | Jun 06 12:33

The real issue is, we as pwd have fought hard to overcome the notion that we are incapable of making our own decisions, so we get anxious when an organization is taking away our choice. But NDY is not advocating that a pwd don't have the right to commit suicide. If "you" (figuritively) want to kill yourself then do it YOURSELF! NDY message is when you take the current for-profit health care system and you add physician assisted suicide as a legal medical option given to those who are supposedly terminal (chronic or acute are often deemed as terminal) what do you think will happen? Think it through to it's logical conclusion. One time cost of $100 worth of pills vs long-term care. What do you think the insurance companies will encourage pwd to opt for? If one wants to die, then they should find a clever way to carry it through without laws that will further pollute the already toxic health-care system, which will further endanger 10,000 of us being killed, who really want to live!

5. ParaDude | Jun 06 01:19

Oh oh....personal attack Josie. Please delete that as soon as possible. You simply do not get it do you Rwood? The facts are that there are far more unsuccessful suicides than there are successful ones. Quite often these botched suicides leave people in far worse situations than they were in before. Secondly, assisted suicide means it is done cleanly and effectively. No bloody mess for family members to clean up, no stinking rotting corpse to discover. Why people are afraid of this sort of thing is beyone me. It's not like we'll see advertisements saying "Feeling sad? We can help!" and their certainly isn't going to be a gang of thugs dragging us out of our homes to be euthanized. It's about choice, something that the vertically challenged (yet horizontally gifted) have always deserved.

6. MerryA | Jun 06 01:45

No decisions about me without me. Intelligent, thoughtful people who are fully aware of their decisions and the ramifications choose assisted suicide. Thank God for Dr. K and other doctors like him who do not allow the rights of an individual to be dictated by an extreme fringe element like NDY.

7. MerryA | Jun 06 02:06

Some people are not be able to committ suicide without assistance. I am not an advocate of suicide but I am an advocate of self-direction. I had a friend who decided it wasn't worth fighting the cancer anymore so she requested the feeding tube be removed. She was conscious, fully aware and knew that removing the tube would hasten her death. She would have died anyway in about 3 months but she cut the time to about a week. What is the difference in that and PAS? None. She decided, she self-directed her care.

8. MerryA | Jun 06 02:06

StarlightAngel asked I post this for her ..... throughout this whole debate there has never been convincing evidence that everyone requesting assisted suicide would have been convinced to change their minds or been otherwise ruled mentally unfit to decide. frankly, i think NDY's entire agenda is demeaning and internally inconsistent . if people with disabilities are capable of living, working, raising families etc. independently then why are we not capable of deciding when and how we want to die? sheesh. the whole controversy surrounding dr. k is precisely why PAS needs to be legalized, so that it's not down to lone operatives performing "underground" according to their own individual standards. there needs to be some middle ground for us between the kevorkians on one extreme and the NDY types on the other.

9. SharonL | Jun 06 02:27

These days MerryA's claim that the disability-rights org., Not Dead Yet, is an "extreme fringe element" is widely recognized as little more than a dated mantra. For some time now NDY, a leader in the anti-physician-assisted suicide movement, has been one of a growing number of *many* disability and minority rights org.'s to recognize the dangers that PAS presents to pwd's and other devalued groups, including women. Reasonable, thoughtful pwd's have considered the ramifications of the right-to-die movement (made up primarily of white, well-to-do, nondisabled people). Many of us support the disability-rights anti-PAS position. When NDY is referenced in derogatory ways intended to undermine this perspective, it is not only one group's point of view that is belittled, it is the voices of many disabled people that are being undermined. Dismissing voices in this way serves to shut down dialogue between pwd's on this issue, when it's clear that what we need is more conversation, not less.

10. ParaDude | Jun 06 02:46

NDY should stay out of people's business. They are nothing but publicity seeking whores who will prostitute themselves and other innocent people to push forward an agenda that isn't accepted by the majority of crips.

11. Jon(IOM) | Jun 06 03:57

Kathy, you accuse PD of "speaking for all of us" when in fact that is exactly what you are doing. How can any of you "do gooders" know what the hell you are talking about unless you have been in the position Dr K's patients have been? My brother-in-law was dx'd with liver cancer with mats to the bone and brain. He was 36, with 2 young daughters. He was in terrific pain, even under the care of Hospice for weeks. On Fathers Day while his wife and kids were at the Circus, he went to the garage, wrapped himself in plastic and shot himself in the head. If he had been the family pet, he would have been gently given a shot and put to sleep, but people are not treated as humanely as the family pet. How much easier it would have been to let him die in his own bed, with his family to watch him go . His wife and daughters will never be able to forget what they saw when they pulled into that garage. I hope you are never in that position without a choice.

12. Jon(IOM) | Jun 06 04:09

Sharon L. I cannot honestly believe what you posted. It proves that you have NO idea of the scope of PWD. If I chose to end my life, there is no way I could do it without the aid of someone else. Honestly. Would I ever lay that awful situation on someone I loved, I hope not, but depending on pain level, I cannot say for certain. Instead of being jailed, I believe Dr. K should be given the Nobel Peace Prize. I would never wish my level of disability on anyone, but if  Susan wants to live my life for one month, she is certainly welcome. At least she would KNOW something about disability then. HONESTLY!

13. Xuxan | Jun 06 05:49

Jon, What do you actually know about my life? No thank you, I don't want to live a month with your disabilities as I do believe I know how very difficult it is. I have never claimed to be severely disabled. My son is. I live with that each day and combine that with my multiple minor & moderate disabilities - that is enough for me.

14. ParaDude | Jun 06 06:17

Seems to me the position of NDY is that ANYONE who thinks they have had enough of this life, and wants it to end now, must be mentally unstable. I say NDY cannot know the mindset of the INDIVIDUAL and that perhaps, the choice to die, is one of the most RATIONAL decisions they have ever made.

15. Lola | Jun 06 06:46

it's all about choice and who has the right to make that choice. i am the person who should have the right to do whatever i please with my life. if i wanted to end it , i should be able to have a doctor assist me ( not just prescribe me pills )to make sure i die successfully. MY life, MY choice. NDY has no right whatsoever to decide what's right or wrong for me. assisted suicide should be legalized in all states in the country !!

16. ParaDude | Jun 06 06:54

Excellent response Merry. I think those who claim to advocate for the disabled should stick to issues that the disabled community is united on. They should stop speaking as if they are expressing the concerns of all and at the very least provide a caveat to their listeners stating that "we realize our views are not necessarily the views of all disabled people".

17. Rwood | Jun 06 07:07

Obviously, paraDude don't get it! In Oregon where PAS is legal, the doctors only write the prescriptions -- Dr. don't mix the barbiturates concoction or administer the drugs, nor are they present when the patient takes drugs and dies. -- family is still responsible for the dead body and clean up. No other bills supporting PAS (which, btw have all failed) has ever said a Dr. should administer the drugs because that's no longer PAS -- that's voluntary euthanasia! So, since I have to drug myself anyway (like the Oregon law states), if I'm not clever enough to research how they make the concoction, tell my Dr. I'm in pain save up the pills, make the same concoction -- then maybe what I really want is society's ok. Ask pwd in Missouri about getting wheelchairs -- they know what health care is coming to for pwd's. I've been writing and researching this for 10 years -- so mine is not a knee-jerk reaction. How come non-disabled don't have the "right" to PAS?

18. ParaDude | Jun 06 07:54

Non-disabled should have a right to PAS. You keep wanting to bring up a flawed system like the one in Oregon. All I am saying is that physician assisted suicides should be made available, under strict rules and guidelines. Physicians are already performing mercy killings on a daily basis all over the country. It's not called that, they just call it "upping the dosage of morphine", but the results are the same. Btw - equating a family having to call the medical examiner to remove a body with finding a rotting stinking corpse or a body with have its head blown off is assinine and you'd understand that if you ever were faced with that sort of thing. Did Kevorkian make mistakes along the way? You bet, most trail blazers do. Is the system in Oregon flawed? I have no doubt. That doesn't mean that a better system can't be built. I really think you don't get it.

19. Kathy | Jun 06 07:57

It's interesting that that the man the poster of #1 thanks God for; Jack Kevorkian, and his controversial suicide-for-all stance, represents what is seen as the extreme fringe element of the right-to-die position.

20. Xuxan | Jun 06 08:00

NDY does seek publicity. Too many people think our lives are not worth living & when initially faced w/disability become despondent thinking their life's over or when faced w/neglect of their basic needs feel suicide is the only answer. Most using assisted suicide have had long lives ahead of them but face economic & caregiving challenges - not pain or death. We need universal health care & mental health care parity; living wages & better oversight & training of direct care professionals; & adherence to law around access to education, employment & community. http://www.nytimes.com/2007/06/11/business/businessspecial3/11life.html says "The price of health is part of the calculus in determining whether a new medicine or treatment is worth the cost." Will more and more research dollars dry up when the quickest & most economic cure is assisted suicide? Will long term care exist or will it only be for the wealthy who can afford it out-of-pocket? Assisted suicide or medical genocide?

21. Kathy | Jun 06 08:22

Paradude, could you please stop speaking as though you speak for all of us? and without using the prescribed caveat! That a few pro-PAS bloggers are monopolozing these threads by clogging them with multiple postings that are repetitive in content does not strengthen the pro-PAS position. Rather, it reveals bullyish and oppressive attitudes and behaviors towards people with disabilities who dare to oppose PAS.

22. Xuxan | Jun 06 08:32

Middle ground was supposedly created in Oregon. The law is not followed & does not provide protection for misuse. Physician are to wait 2 weeks before writing prescription & yet some give it the first day. The physician is not there when the patient uses the drugs. Things have gone wrong. No safeguards exist to be sure that the drugs are used on the intended person. There is no monitoring of the person once they get the drugs. "From the time the law went into effect, Oregon officials in charge of formulating annual reports have conceded there's no way to know if additional deaths went unreported because Oregon DHS has no regulatory authority or resources to ensure compliance with the law.""The DHS has to rely on the word of doctors who prescribe the lethal drugs. Referring to physicians' reports, the reporting division admitted: For that matter the entire account received from doctors could have been a cock-and bull story." http://www.internationaltaskforce.org/orrpt7.htm

23. ParaDude | Jun 06 08:39

We all have to rely on Doctors telling us the truth. Get used to it.

24. Kathy | Jun 06 09:04

Lola too. Lola supports assisted suicide for all, a position shared with others in the extreme fringe of right-to-die'ers. Funny.

25. ParaDude | Jun 06 09:13

I'll post what I want, how I want, when I want. But thanks for your suggestion.

26. SharonL | Jun 06 09:46

Lola wrote: "if i wanted to end it, i should be able to have a doctor assist me (not just prescribe me pills )to make sure i die successfully." Lola, do you understand that you can commit suicide if you want to? Honestly! And you can refuse life-sustaining treatment, undergo terminal sedation...I'm not lying! It's already your choice! But demanding the right to have a 3rd party participate in your suicide seems just plain lazy and I'm sorry to say, quite selfish. Talk about asking for "special" treatment! Give me a break, nobody has a guaranteed right to medical treatment in this country! What makes pro-PAS people so special as to expect the right to risk further overburdening an already overtaxed medical system for the sake of helping people with a task as basic as suicide. Honestly!

27. Lola | Jun 06 09:55

"Lola too. Lola supports assisted suicide for all, a position shared with others in the extreme fringe of right-to-die'ers. Funny." that's not funny . that's MY opinion and i am entitled to express it whenever i please.

28. Kathy | Jun 06 10:01

i agree with you lola, and i am entitled to find hypocrisy to be funny.

29. Lola | Jun 06 10:04

what in the world is hypocritical about my opinion and the opinion of others who happen to agree with ?

30. Kathy | Jun 06 10:23

only that you have derided anti-PAS folks as "extreme fringe elements" when you yourself hold the extreme fringe view within the pro-PAS position: that assisted suicide should be available to everyone. Sorry, this strikes me as hypocritical as well as disingenous. That's just my opinion which i have every right to express.

 

 

 
Website Services: Degnan, Co.

Tremors of Intent

By Josie Byzek

I'm sarcastic as hell, have an egg-head streak a mile wide and have called the disability community my home since 1990, when I got a job answering phones at the Pittsburgh Center for Independent Living. Since then I've been an advocate, activist, thinker and -- above all else -- a writer on all things disability related. I knew since the '80s I had something going on with my body, but didn't get diagnosed with MS until 1998 when I finally had a relapse severe enough to be measured and weighed by doctors. I currently live in Pennsylvania Dutch country with my family and our four cats, three fish and two turtles.


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