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Sunday, July 01, 2007

Thoughts on the 'Right to Die with Dignity'

Whenever I hear the phrases "right to die with dignity" and "quality of life" I think, uh oh. I know once again the A.B.s are having a conversation about me, without me. I watch the news shows, waiting for one Crip activist to have her say, one Gimp, whose wholeness is in question, to be given an opportunity to offer some real expert information. I wait through several incarnations.

The grand debaters bandy many precious words. They call on some of my personal fave raves like "freedom of choice" and "dignity". Who, they ask, could be against these things? Who, they ask, would deny these things to their fellow citizens? No one who believes in the great principles upon which this great democracy was founded, right?

Unh uh. I'm not buying it. As an aging, female Cripple who lives with pain and in poverty, I know too well the value society places on me. Every day I am assaulted by images that degrade me, that deem me a burden, a tragedy, that question the quality of my life and the worthiness of my existence. I live in a society that more and more forces me to fight for basic health care, that forces me to put the majority of my limited physical resources into securing my survival. I live in a society that in every way imaginable tells me I should not want to live. And now they want to offer me the dignity of having the right to choose to be put out of my misery by a licensed physician. At the risk of sounding paranoid, I suspect my best interests do not reside at the heart of this matter.

One of the things that disturbs me most deeply, besides my exclusion from the so-called debate regarding "assisted suicide", is the fact that rarely are the underlying values and assumptions fueling this quest ever examined or even questioned. The desire to establish a constitutional right to die is built upon a foundation of belief that the damaged/difficult and/or dying body is worthless, that the experiences of living with the damaged/difficult and/or dying body are undignified. Dignity. That word.

To me, what it all gets down to is bodily fluids. Okay, that's a tad flippant, but I really do think it's an important part of the story. Nature at its most unruly. Our very human essence is so damned undignified. And so uncontrollable. We spend most of our life working like fiends to maintain the illusion that we are in control, that we can tame and tidy nature. Let's face it: nature always has the last laugh. Nowhere does the old girl laugh louder than with disability and death.

God forbid we human beings should ever have to get up close and personal with our unwieldy, messy, smelly humanness. In every way possible, this culture's rules and values distance us from the realities of our own bodies in all their glorious imperfection. Just flick on the TV any time of the day or night and you'll be bombarded with messages about the necessity of looking perfect and smelling better. It's presented not as an option, but an obligation. Of course we want to hasten death; of course we want to make it easier for Cripples to die. Out damn spot. Out.

I don't think it's just coincidence that this urgent, zealous drive to give us more ways to opt out of life comes at a time when more and more of us are visible, living in community, being "in the face", so to speak, of able-bodied assumptions about normal. And not just the us that can almost pass as AB, but those of us whose bodies are wildly uncontrollable, we of the drooling, spazzing, claw-handed variety of Cripple. And instead of trying to fade into the nooks and crannies as good Cripples of the past were taught to do, we blast down the main streets in full view, we sit slobbering at the table of your favorite restaurant, we insist on sharing your classroom, your workplace, your theater, your everything. The comfort of keeping us out of sight and out of mind behind institutional walls is being taken away. And because there is no way for good people to admit just how bloody uncomfortable they are with us, they distance themselves from their fears by devising new ways to erase us from the human landscape, all the while deluding themselves that it is for our benefit.

And of course these fears that fuel the right-to-die movement are fed by economics. The high cost of Cripple maintenance and slow death. Limited resources and yada yada. Limited resources? As a society, we seem to have no problem paying for what we want; there are no limited resources when it comes to those things we deem of value. Unfortunately, our society's priorities are out of whack. America belches out billions for stealth bombers and rations health care; America pours its financial resources down the drain of bigger prisons while cutting hot lunch programs for hungry children. We shouldn't be surprised that we're on the hit list. All in keeping with the good ole American love affair with the quick fix. So much easier to kill something than to care for it.

As someone who's spent most of my life on the receiving end of one kind of medical treatment or another, who's been probed and pried by more doctors than I can count, I can say from sad experience that when it comes to disability the medical profession ain't got a clue. Doctors are the last folks, as a group, I think oughta have more power to do me harm. It's not that I think docs are, by nature, a particularly vicious breed; it's just their training. What should we expect from folks who are taught that to heal means to fix or eradicate? If you can't cure it, bury it. Chronic illness, disability, the slow train of dying just don't make for a comfortable fit.

My wariness about granting doctors more power over life and death isn't just because of the raw deal I've had personally. I know history. The 200,000+ disabled people killed in Germany as prologue to the Holocaust weren't slaughtered by goose-stepping brownshirts. Unh uh. They were starved to death and lethally injected out of their misery by nice professional men in clean white coats, men who'd sworn to uphold the Hippocratic oath, that same oath about healing that the doctors pushing for assisted suicide in 1997 USA have sworn to uphold. Even with the glaring spotlight of historical perspective, the murder of our ancestors is held separate and unequal to the murder of the six million that followed. Not one of those doctors has been called a war criminal. We were and still are, after all "special circumstances."

If only Americans weren't so confident "it couldn't happen here," maybe we'd be safer. There are few things more dangerous than the arrogance of assuming you're incapable of behaving inhumanely. Decent people don't commit inhumane acts in good conscience, so in order to maintain the myth of enlightenment, those acts must be recast in a positive light. Dropping the H-bomb on the civilian population of Hiroshima moves from atrocity to "life-saving necessity"; killing those we deem a burden becomes euthansia, mercy killing, the relieving of undue suffering.

I have to admit I feel inadequate to express in a rational, reasoned way what I understand in the deepest cell of my marrow to be a movement toward genocide. But no matter how awkward or inarticulate we feel, no matter how difficult it is to peel away the layers to get deep inside the truth of this movement, we must do it. It is our obligation as the ancestors of this country's future victims of the right to die.

Copyright 1997 by Cheryl Marie Wade. Cheryl Marie Wade is an activist and award-winning writer-performer. Her videos include Vital Signs: Crip Culture Talks Back, Self-Advocacy: Freedom, Equality and Justice for All and Here: A Poetry Perfomance. You can contact her at 1613 Fifth Street, Berkeley, CA 94710-1714 or send email to: GnarlyBone@aol.com

Marie responded:

This article really angered me, as you will be able to tell. The words I use aren't my normal choice of words, such as cripple. I used them because she used them.

I think this lady is smoking the cripple crack pipe. Here’s why:

There are several reasons a person may want assisted suicide, and I don’t think any of them involve someone else offing cripples cause they are cripple. There are 4 basic categories I would like to discuss; Body, No Mind; No Body, No Mind; Mind, No Body-Normal; and Mind, No-Body-Special Circumstance.

Body, No Mind: This would refer to persons that are basically living vegetables due to an accident, a health issue or trauma at birth. I work with this type of person on a daily basis in my line of work. Realistically, if these people had been like this in the womb, the mother’s body would probably have naturally aborted them. But in most cases, it happened during or after birth. If a person ended up with brain damage but his/her body is still functioning, do you assist them in suicide? Of course not! That would be murder, especially since they can’t give consent due to their cognitive lever. Granted their quality of life really isn’t much in my own opinion. But then again I don’t know what someone with severe or profound retardation thinks.

No Body, No Mind: This again is basically a living vegetable, but this time they have some sort of machine keeping them alive. Do we assist them in suicide? I would say it depends. If they hadn’t set up a precedence for how they would choose to live if such a thing were to happen to them, bluntly, they should get to live. However, my grandparents have signed the legal papers (Power of Attorney or something) that say if they are ever in the position where the only thing keeping them alive is some sort of machine, they want the plug to be pulled. They don’t think their quality of life would be good if they didn’t have a mind and a body to function with. But still in this case it isn’t someone else trying to pull the plug from a cripple. My grandparents have specified that this is what they want while they have their “right minds.”

Here Madame Cheryl Marie this isn’t someone having a conversation “about you, without you.” First of all, her body may be failing, but she’s still got her mind. In both of the above situations, the people don’t have their minds. Not all cripples (for even if your organs are functioning in the “Body, No Mind” example, if you don’t have your mind to control your muscles, your really are still cripple) fall into her category. Is she speaking for all cripples? If she is, that’s a pretty big mouth then. Maybe she’s trying to bite off a little more than she can or should chew.

Ok, then let’s talk about what in my eyes is her category-

Mind, No Body-Normal: This is for the Madame Cheryl Marie’s, the Chris Reeves’, the Stephen Hawking’s. These people have limited or no function of their bodies, but their minds are intact. They seek out help from others to get their “activities of daily living” (or ADL’s as we call it in my job) done and don’t mind having to rely on others to get into the shower, feed them, wipe their asses, etc… They have a positive outlook on life and want to live, in pain or without pain. They have a good quality of life because of their good perception of their life. I also work with people like this in my line of work. One of the people I work for is very smart, but has only control of moving her head. Yep, she “drools.” Yep, she “spazzes”. Yep, she goes to restaurants. “And because there is no way for good people to admit just how bloody uncomfortable they are with us, they distance themselves from their fears by devising new ways to erase us from the human landscape, all the while deluding themselves that it is for our benefit.” Really? Who the hell does that? Am I or anyone else trying to kick people with physical handicaps off the planet? As much as this women thinks that us “good people” are discriminating against her, I think she is way underestimating how much she is prejudiced against us.

I believe this is just another case of a super sensitive cripple. When I had a paper route in jr. high, I delivered to a lady in a wheelchair. Once while I was dropping of her paper she was getting her mail and dropped all of it on the front porch. When I bent down to help her pick it up she barked at me, “I CAN GET IT MYSELF.” I thought what a crippled bitch. If a fully able bodied (I assume that what the AB stood for in the article) person had just dropped his/her mail I still would have bent down to help them. I wasn’t helping her because she was in a wheelchair, I was helping because that’s what “good people” do. And even if I was helping her because she was in a wheelchair, so what? Sometimes there are special circumstances that a person will give a little extra effort to help. If I am standing at a door and someone with a stroller, on crutches, in a wheelchair is approaching the door, I’ll stand there and hold it open for them. Do I do it because I think that they can’t do it by themselves? No, they probably could, it would just be a struggle and take them longer. So to be helpful, I’ll hold it open for them. Most people will thank you for your help, not be a bitch. I just wish that if these super sensitive people don’t want be discriminated against, don’t view everything as discrimination.

I’ll get off that soapbox now and get back onto the assisted suicide soapbox for the last category-

Mind, No-Body-Special Circumstance: This is for the dude in the Metallica ‘One’ video, the Acushla’s in Million Dollar Baby. People like ‘Miss Florence Nightingale’ that have their minds but no bodies, but unlike her, do not want to live. This is, I believe, at the heart of assisted suicide. Here’s truly where the “dying with dignity” comes into play. “Darkness imprisoning me. All that I see absolute horror. I cannot live, I cannot die. Trapped in myself, body my holding cell. Landmine has taken my sight, taken my speech, taken my hearing, taken my arms, taken my legs, taken my soul. Left me with life in hell.” The only thing the landmine didn’t take was his mind. Does this sound like a guy that wants to live? Now, Miss Helen Keller, are you speaking for/about someone else, without someone else? Do you think that he is looking at the “value[s] society places on” him? Is he saying society think that his life is hell? No. He thinks that his life is hell. He just wants peace. ‘Miss Anne Frank’ talks about what discrimination is like for people with disabilities and their rights. Are we not taking persons rights away to kill themselves by not caring out their wishes if they want to die? It’s not like they can kill themselves if they have no arms to kill themselves – “I cannot live, I cannot die.” Acushla tried to bit off her own tongue. Is that dying with dignity?

I don’t believe these types of suffering people have anything to do with “coincidence[s] that this urgent, zealous drive to give us more ways to opt out of life comes at a time when more and more of us are visible, living in community, being "in the face", so to speak, of able-bodied assumptions about normal.” How dare she try to speak for all disabled people. How dare she compare herself to people like Acushla. How dare she try to place her values of persons with “normal” disabilities on all persons with disabilities!

The Hippocratic oath is all about “first do no harm.” In my opinion, if a person is in such agony as the person is above, doing the harm is allowing him to suffer in his own hell. She says herself, “Decent people don't commit inhumane acts in good conscience, so in order to maintain the myth of enlightenment, those acts must be recast in a positive light.” I guess that depend on the definition of “inhumane.” We would consider it inhumane to let a dog or horse go on living in extreme pain. The animal would be euthanized. But she would consider that inhumane for a person with a choice???

Wikipedia states ‘euthanasia’ is from the Greek meaning “good death” and is defined as “the practice of terminating the life of a person or animal in a painless or minimally painful way in order to prevent suffering or other undesired conditions in life.” Cheryl Marie, I’m happy that you aren’t suffering or have undesired conditions in your life. That’s great. But for those that are suffering and have undesired conditions, you shouldn’t speak on their behalf and act as if you understand them because you clump your disability in with theirs. You can have your form of a good death, and they should be allowed to have their form of a good death.

(And don’t even get me started on Germany. Did she really say that “the murder of our ancestors is held separate and unequal to the murder of the six million that followed”????? Did she just say killing people with disabilities was worse than killing people without disabilities? Wow.)

Dave said:

I have never been able to see the offense in symantics or hate speech. My philosophy is "consider the source". If someone is an ignorant a-hole who is just spewing evidence of why he is a blockbuster video clerk, then just leave it at that. If someone is a vile evil

soul, then consider their reason for spewing the vile, trying to exorcise their demons by being hateful. Either way, I would never give credence to some jack ass' insulting words. I am not saying this is the case here because i don't know you, but there is that notorious group in society who is offended for the sake of being offended. They are entranced on seeking personal salvation via martyrdom.

Marie responded:

Heyyyy! I used to be a Blockbuster video clerk!!! LOL!

I see your point, however, you could say the same thing to the person who wrote the article as well. But, most people wouldn't refer to this disabled person as an "a-hole" because she is disabled. They would "consider the source" and because this source is disabled, people may give her credence to what she is saying. This is kinda my point. However, just because she is disabled, she is trying to speak on behalf of all people that are disabled, and really on behalf of all the "good people" that don't have a disability. It didn't really offend me, just made me mad.

Sara said:

I agree with you more than with her, but i can see some of her point. and the reason she said the killing of the people with disabilities was different than killing the rest during the war (and she is by far not the first to say it) isn't because they think their lives are more valuable, but because they feel like the world treated these killings with less anger than the rest. like people thought in their own way that killing the crippled people wasn’t as bad as killing the able bodied people.

by the way, in your diatribe you left off one kind of assisted suicide person. whole body, whole mind but dying and unable to pull the trigger without help because of lack of courage. there are people who are perfectly capable of committing suicide themselves because the reason they want to is because they have been told they have some terminal illness but it has not yet (and maybe won't) debilitate them to the extent they couldn’t kill themselves. but these people can’t quite bring themselves to kill themselves so they ask for help.

Marie responded:

I originally had the 5th category of Body, Mind and was going to say all the things that you just wrote, but I was tired, so I made it back to 4. Thanks for doing it for me! Plus with my grandparents example when they were able bodied and in their right minds I kinda did cover it, sorta. These people could also be thinking about their "messy human" qualities or whatever Madame called it. Maybe they don't want others to have to deal with their human messiness. Don't want to have others have to wipe their ass. Know what kind of suffering is in store for them, and for their family member and friends to see them go through. Maybe they don't want to have to go through that or have other see them go through that. Messy is still messy.

And Germany at the time was Germany. Bad was bad. Mistreatment is still mistreatment for all peoples.

Sara responded:

i agree with you on the first part, and i agree with you on the second. but in reality, people who are upset about the killings of disabled people are upset about it being done but thats not really what they are talking about. what they are talking about is the reaction to it afterwards and even now.

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