Out of the following three issues, which do you think is creating the loudest buzz on activist listservs?

A) Thanks to new regs and a nasty interpretation of an old reg, Medicare will now pay less for many wheelchairs, and wants to only cover equipment appropriate for use in a home — as opposed to sidewalks, gyms or long rolls from a parking lot to a desk in an office. 

B) Ashley “The Pillow Angel” X is an unnamed Seattle, Wash., child with severe cognitive disabilities whose parents cajoled doctors into a radical and controversial set of therapies to keep her very short. As part of the therapies, doctors removed her breast buds and performed a complete hysterectomy.

C) Dr. Jack Kevorkian was released from prison on probation last week after serving eight years for the death of Thomas Youk, a man with ALS. Kevorkian is responsible for at least 130 deaths.

Did you guess C followed by B with a distant runner-up of A?

Now, I don’t want to minimize how serious a threat Kevorkian was back in the ‘90s. At the time, ensuring the ghoulish Kevorkian paid for at least one of his crimes — and showing our society that not all of us agree we are “better dead than disabled” was an urgent cause. It’s hardly pressing now. He’ll ride the circuit, some will acclaim and some defame him, but he’s done.

And Ashley X? Our activists picked up her cause more than a year after the surgeries were completed. It wigs me out that a little girl was stripped of her womanhood, and our community did strong work in ensuring these therapies won’t be done to another little girl at some point in the future. But what happened to Ashley X is hardly relevant as an issue that threatens our community, our emerging disability culture.

Ah … but Medicare gearing up to pay less for wheelchairs people are using right now? And actually trying to enforce its ridiculous interpretation of the “in-the-home” regs to keep people with mobility impairments from being able to comfortably leave their houses? That cuts deep, especially since the private insurance sector plays “monkey-see, monkey-do” with Medicare when it comes to pricing and defining “medically necessary”. There’s a bit of a buzz building, thanks to groups like United Spinal Association, the National Spinal Cord Injury Association, Users First Alliance, the ITEM Coalition and the think-tank AIMMM, but most grassroots activists haven’t yet looked deeply at this threat. Oh, but they will, once the denials start to build up.

Can you afford to pay the difference between what your current chair costs and what your insurance pays for it? Will you be comfortable in a clunkier model that doesn’t go quite as fast or far? I hope so. If not … well, take solace in the knowledge that our community is doing all it can to prevent Dr. Kevorkian from paying you a house call.

"What we don't need are advocates who pretend to speak for the disabled when in truth, they are only pushing for their own personal agendas." Hmmmm all these folks are pushing their personal agendas? The following organizations are aligned with Not Dead Yet against legalization of assisted suicide: American Association of People With Disabilities AAPD http://www.aapd.org, American Disabled for Attendant Programs Today ADAPT http://www.adapt.org, Association of Programs for Rural Independent Living APRIL http://www.april-rural.org, Disability Rights Education and Defense Fund DREDF http://www.dredf.org, National Council on Disability NCD http://www.ncd.gov, National Council on Independent Living NCIL http://www.ncil.org, National Spinal Cord Injury Association NSCIA http://www.spinalcord.org, TASH http://www.tash.org, World Association of Persons with Disabilities WAPD http://www.wapd.org, and the World Institute on Disability WID http://www.wid.org. What a lot of personal agendas representing national and world disability organizations!

Kevorkian was a pioneer...better systems are sure to follow.

Kevorkian did not use the words mercy killing - he used assisted suicide, medicide, kill, medical service, medical obligation & final solution. "Applications are being accepted. Oppressed by a fatal disease, a severe handicap, or a crippling deformity? Write BOX 264, Royal Oak, Mich. 48068-0261. Show him proper compelling medical evidence that you should die, and Dr. Jack Kevorkian will help you kill yourself free of charge." Kevorkian did not call what he did to Thomas Youk assisted suicide, he had Youk sign: "And that you have chosen direct injection, or what they call active euthanasia, to be administered by a competent medical professional". (Kevorkian lost his licenses to practice medicine in 1991 & 1993 - is he a competent medical professional?) Kevorkian is willing to help a disabled or dying person committ suicide, but not a person who is able bodied. So only dying or disabled people are competent to decide to end their lives via assisted suicide? Susan Fitzmaurice

No barbaric pressure? When our Congress denies people the right to live in the community through the refusal to pass MiCASSA, it is barbaric. http://www.adapt.org/freeourpeople/MiCASSA/default.htm

"I was being a tad bit sarcastic when I said the "i guess you have to have a disability to understand". A cheap shot I would have been better off not making." Why would you be sarcastic and take "cheap shots" with regard to what death and is obviously a heartfelt issue for you?

Because I felt like it. Why do you do the hurtful things you do? Ya see Joy, I can at least admit what I did, and acknowledge it was wrong.

Never heard of em

Try sticking to the topic Xuxan...let's talk litigation.

If you read the link you would know (since you live in Canada and have no reason to know otherwise) that MiCassa is very much on topic. The reason most people cite for wanting assisted suicide relate to loss of autonomy. A critical piece of autonomy is living where you want to live and receiving services you want in the way you choose. MiCassa attaches dollars to people rather than to services. So you can take your dollars anywhere you want. If you want to spend your money on people coming into your home - you do. If you want to go into a nursing home - you can. Now some reimbursed for services can only be received in a nursing home - so some people have no choice but to live in a nursing home and that choice is worse than death. The issue of having to be homebound to get a powerchair or receive specific services would be moot with MiCassa passed. It choice and autonomy are the real issues - MiCassa is the solution.

Kevorkian was a pioneer. Call it assisted suicide, or mercy killing, makes no difference to me. He provided a service people wanted. We need 100 more Kevorkians in the world, clinics run under strict guidelines and regulations. If I want to die, and I need assistance doing so, I'll be very glad that I have that sort of option available. Again, doctors are performing these sorts of procedures on a daily basis.

A great myspace representing PowerQuad! http://www.myspace.com/powerquad The Ultimate Disability Forum - BY people with disabilities, FOR people with disabilities! http://powerquad.net/forum/

Jack's release is important because he and the press need to know we remember what he did. 70% of those he helped to die were not terminally ill. Kevorkian has promised before to stop assisting in suicides. Ashley X is an issue with far reaching effect for anyone born with a disability. How much 'fixing' of our bodies is allowable? How much risk to our life is acceptable to rid us of our stigma? What was done to Ashley was considered wrong by WPAS because her legal safeguards were not followed. It's still not been addressed whether what was done to her was wrong even had legal safeguards been properly in place. Our lives are misunderstood. Being part of our communities adds to our quality of life, which often requires assistive devices. Health care dollars are thought to allow you to survive, not so you can live. That must change. These 3 things are all important and none should be given short shrift. Susan Fitzmaurice

"So only dying or disabled people are competent to decide to end their lives via assisted suicide?" by susan.... yes , because those are the people who need help ending their lives. AB people can end their lives without help. just my 2 cents

A. The problem isn't just the issues with medicare. The biggest problem is the manufacturers of wheelchair over inflating their prices. B. Ashley's parents should be applauded for loving their daughter enough to help ease her future pains. The MYOB rule should apply. C. Kevorkian was doing a service, a much needed service. His only mistake was he called it what it was, "mercy killing". Doctor's across N.America perform this act daily in every hospital on the continent. They give orders to increase morphine drips on patients knowing full well that the dosage will "put them to sleep". These doctors who give the orders, and the compassionate nurses who follow through with the orders should all be applauded for their humanitarian services. Those who subscribe to organizations like NDY are doing the disabled population a dis-service by promoting the concept that us Crips don't know what we want. The disable deserve the choice, we are ABLE.

For some people, suicide really is the best option...I can think of one person right off the top of my head.

I agree with Lola. The only thing I would say I don't agree with is that I actually think assisted suicide should be offered to EVERYONE even the ABs of the world. Even an AB can botch a suicide attempt and the results are not pretty, for them, or their families. Put in place the proper guidelines and procedures and regulate the industry. No one has a right to tell anyone else to live.

Lola writes: "...those [dying and disabled] are the people who need help ending their lives. AB people can end their lives without help." With all due respect I believe you have it backwards. Many, if not most, disabled people don't need help ending our lives. A little cooperation in living our lives would be good though. Wouldn't that seem to make more sense? Nondisabled folks however, well that's another story! My goodness, they (esp. women) are notorious for failing in their suicide attempts! What's that about, I wonder? Anyway, based on Lola's logic, it's nondisabled women that should be getting medical assistance in committing suicide... hmmm, I don't know Lola...I just don't think an argument for the rights of nondisabled people to assisted suicide is going to go very far. Ater all, they're supposed to use the suicide prevention programs that we all pay into.

so can i , michele.

but i wish ppl in those organizations ( lots of AB ppl ) were in the shoes of a severely disabled person for ONE day, so they would know why some just don't want to live like this anymore.

The Ashley thing is old - I hope the community has moved on.

Most of the people Kevorkian helped to die were able to commit suicide independently. They just didn't choose to do it that way. People who are unable to independently commit suicide have the right to refuse medical treatments that prolongs their life - effectively committing suicide. Susan

That's a rather arrogant position to take. I guess one actually has to have a disability in order to fully understand. Committing suicide can and often is a very messy thing, it can also be extremely traumatic for the family members who find your lifeless body. Assisted suicide is not necessarily for those unable to do it themselves, assisted suicide is for those people who want to make sure the suicide is successful, painless, and done in a manner that causes the least trauma to the family members left behind. Who cleans up the mess if you put a bullet in your head? Chances are it will be your family. You once described the horrible way TS had to die (even tho she was already dead), but you expect people with a disability to suffer thro prolonged and agonizing deaths by refusing medical treatment if they want to commit suicide?

Susan, I believe that Dan was saying, the disabled need strong advocates with pure motives. Not you. Sorry if I took it wrong ,Dan, but you know the old saying...there are none so blind as those who will not see. (Oops! I will be in trouble using the word blind!)

sharon, i see you didn't understand what i meant. let me put it this way . it is MY life and let's say i don't think it's worth living anymore. that is MY choice regarding MY life, right ? it doesn't matter if there are or there should be more "cooperation in living our lives" ( as you wrote ). i have the right to decide when my life is going to end. as i said in another comment in the " let the cripple people demonstrate " i think assisted suicide should be legalized in all states in this country.

PD , i don't think that people have to have a disability to fully understand the concept. i've know people who have commited suicide and none of them were disabled. but i totally agree with the rest of your post. very well written. the friends i live with have had a suicide in the family and they were they ones who had to clean the mess. not a pretty sight :-(

I too believe in choice. My body, my choice. I believe that people who are disabled or terminally ill should be able to chose to live out our natural lives including with life-sustaining treatments and in the face of futility labeling and stigmatization. I believe that the practice of physician-assisted suicide limits the life choices of people with disabilities and other minority groups. Therefore, because I am pro-choice I must oppose physician-assisted suicide. That's my choice. My body, my mind, my choice.

"That's a rather arrogant position to take. I guess one actually has to have a disability in order to fully understand." "Assisted suicide is not necessarily for those unable to do it themselves, assisted suicide is for those people who want to make sure the suicide is successful..." You seem to have contradicted yourself. If disability is a requirement to understand the concept of assisted suicide, then why did you state that assisted suicide should be available for everyone, disabled or not? Are you suggesting that an individual who isn't disabled might not fully understand what would ultimately, be their final choice?

Sorry but it is not on topic. The topic is about Kevorkian. You make the assumption that the only people who might want the assistance of a physician to commit suicide are living in extended care facilities. The TRUTH of the matter is that they are only a small fraction of the people who might want that sort of help. I'll let you know when my blog is up and running, I'm sure you'll be very interested in posting there. Some of the topics to be discussed will be Kevorkian - Hero or Devil. Stuff like that. :)

I fail to understand why people like to take this to some extreme. Physician assisted suicide is not something another person will try to force on anyone. Physician assisted suicide is something the patient chooses to ask for, not something a physician demands the patient choose. You believe in pro-choice? Good, then we are in agreement. I demand that all have that choice. You want to elimate one of the choices.

"Physician assisted suicide is something the patient chooses to ask for, not something a physician demands the patient choose." ...... EXACTLY

I don't believe you or Paradude have a clue what my motives are. In the words of Teddy Roosevelt "We must scrupulously guard the civil rights and civil liberties of all citizens, whatever their background. We must remember that any oppression, any injustice, any hatred is a wedge designed to attack our civilization." Paradude said "When you talk about your pet issues I think it is important to do so with the caveat of "we recognize that this is our position and not necessarily the position of the majority"." And I countered with nearly all the major US national and international disability organizations DO agree with me and with Not Dead Yet. It is not a minority position.

What doesn't Susan understand? Why do you find her position arrogant? I don't know about what goes on in Canada, but in the United States an adult has the right to refuse medical treatment.

yes, i am for disability rights and life-choices also. i'm with sharonl. I want the right to decide to live out my life as i see fit and without barbaric pressure from insurance co.'s or the medical establishment to hasten my death.

refuse medical treatment and end up dying a long and painful death. Or make the choice to step out with dignity. Xuxan suggests that we should/could choose the former, I think everyone deserves to have both options available.

And you fail to understand. MiCassa is about getting services you need to live at home (or a nursing home if your choice). That means a wheelchair that meets your needs to roll to the market or around the gym, not just from your bathroom to the kitchen. It means hiring people to provide you your care that you choose. It is about not being forced to live in a nursing when you turn 21 because you need someone to be sure vent doesn't fall out overnight. The passage of MiCassa would have an impact on why people choose suicide, why Ashley's parents couldn't imagine providing the care she needed as an adult, and would change the way Medicare/ Medicaid pays for DME. Passage of MiCassa would change the lives of people with disabilities just as much, if not more than ADA. (But you don't think we need the ADA either, do you?)

Kevorkian cares very little for the minds of the people he has assisted to die. He does consultations by phone. He has spoken to people's doctors who said they were depressed and not of sound mind to make such a decision. He focuses on why people have little to live for, not what they do. http://www.freep.com/apps/pbcs.dll/article?AID=/20070527/NEWS05/70525061/1007/NEWS05 Kevorkian prevents messy, painful suicides? "Now she drew long, painful breaths, sucking the gas deep into her ravaged lungs. But nothing happened. It's not working," she blurted finally. Keep trying, Kevorkian insisted. Of course it will work.http://www.freep.com/apps/pbcs.dll/article?AID=/20070527/NEWS05/70525068/-1/PRINT Susan

Lola - I was being a tad bit sarcastic when I said the "i guess you have to have a disability to understand". A cheap shot I would have been better off not making. That said tho, I'm glad you understood the rest of my post. I have personally seen the trauma a suicide in the family can cause. When I was a teen one of my friends decided life wasn't worth living and offed himself with a shotgun blast to his head...in his room in his parents home. His family cleaned up the mess and eventually had to sell the house because of that ghastly memory. Another friend I knew OD'd on prescription meds, his family eventually found his rotting corpse 2 weeks later. Yet another person I knew (not really a friend) decided life in a chair wasn't worthwhile, he too tried overdosing but failed. The ER docs revived him but his brain was deprived of oxygen. He now lives semi-comotose in an extended care facility where he no longer has any power of choice.

Xuxan, he was a pioneer, he blazed the trail. Mistakes made? I am sure. He did however bring the issue out into the open and hopefully those brave Doctors who choose to traverse that trail in the future will do so with a lot fewer mistakes. You speak of Kevorkian in the present tense Xuxan. He no longer does what you are saying he does. Join us all here in the 21st century.

We need good strong advocates, ready to fight those issues that need fighting. What we don't need are advocates who pretend to speak for the disabled when in truth, they are only pushing for their own personal agendas. When you talk about your pet issues I think it is important to do so with the caveat of "we recognize that this is our position and not necessarily the position of the majority". You've seen the responses in regards to your NDY position, and I'd venture to guess that more than half were against the NYD position. Yet you still talk as if you speak for all. You saw the responses in regards to your attempt to make NM into a place you thought was for the collective good. The vast majority say "Hell NO!" yet you continued to push. Advocates we need. People who think they know what is best for "Us" should take care of their own issues first.

Nothing but fear mongering. There is no "barbaric pressure" happening at all. It's about choice, if you choose to LIVE then you get to live, if you choose to opt for physician assisted suicide then you get that choice as well. You can't be "pro-choice" if you want to eliminate one of the choices. Pro-Choice? Just so long as YOU get to choose the choices available.

Kevorkian has been on trial 5 times. Each time except the last he promised to never do it again. This last time he promised he would starve himself to death rater than live in prison. He created a guideline he thought people should follow who did assisted suicides, but failed to follow them himself. He has only promised to stop assisting in suicides for the two years he is on probation. He has lied too many times to be believed. PD your friend who died from an overdose - that is exactly what Oregon provides- a prescription for an overdose. No one knows but the person who receives the prescription that they have it- so nothing in the Death with Dignity law would change the outcome for your friends family.