I woke up this morning and as usual looked forward to reading comments about my latest post. I was pleased to see Elizabeth and Phil, two regular readers, as well as Catherine left comments. I was a bit taken aback by the comments. Elizabeth believes my views are as "extreme" as those I "excoriate". She also thinks the disability community response to "mercy killing" and "euthanasia" is "horribly simplistic. I urge you to read the comment Elizabeth left in full. Phil also took me to task. He wrote that he does "not believe that when a person chooses to die that he or she contributes to the devaluation of the disabled or the very sick". Death is a right in Phil's estimation--a popular sentiment or belief in American society. We are rugged individualists one and all. Both Phil and Elizabeth if I understand them correctly believe death should not be feared--that is a part of life.
I tried to address the points above without much luck in a long reply. A good friend suggested a post rather than a reply was in order. As usual, my friend was correct. So, before reading further look at the comments left by Catherine, Elizabeth and Phil.
It was not my intention to "excoriate" Mr. Johnson or any other individual. I do my level best to avoid personal confrontation. Mr. Johnson has the right to express his views. I thought I treated his views with respect, the same respect I would hope he would treat my words with. I was in no way attacking his character or desire to die. I had no interest in "excoriating" him or any other person with or without a disability. To do so, would be utterly pointless and counter productive. As I have attempted in the past, I tried to use Mr. Johnson's as a spring board to highlight the gross inequities that exist when people with a disability access the health care system. Simply put, the health care system as currently constructed is hostile to people with a disability. Yet Elizabeth is correct that thousands upon thousands of people have worked tirelessly for disability rights. In the twenty plus years since the ADA was passed American society is more accessible physically and socially. This is a given. Much heavy lifting still needs to be done however. And like it or not, lives are at stake. My life and Mr. Johnson's life are at stake. I suggest Elizabeth and others read my article, "Comfort Care as Denial of Personhood" in the Hastings Center Report. A physician strongly suggested death was preferable for me. The physician could make my death happen. This did not take place in the decades before the ADA was passed into law protecting my civil rights. This took place in 2010 more than twenty years after my civil rights were supposedly protected. This incident shook me to the very core. It shattered my trust and confidence. It took me a long time to come to terms with the fact a highly educated physician sincerely believed my life had no value. My death was the preferred course of action. Perhaps the physician believed in euthanasia. Perhaps he believed he was being "merciful", that I had suffered long enough. Here I will agree with Elizabeth--there was nothing simplistic about the thought process. The views that led up to this incident are complex and culturally laden. They did not take place in a void. They took place in a well respected hospital and both of us brought much cultural baggage to the exchange. I believed my life had value while the physician felt it had none. Our respective views were formed well before the incident took place.
Given the above, I vehemently disagree with Phil comment that he does "not believe that when a person chooses to die that he or she contributes to the devaluation of the disabled or the very sick". Phil is correct in that we do have the ability to "adapt" or chose not to "suffer" or to not be alone or decide a life is not worth living. I do not question this. We are entitled to our beliefs. I do question how such decisions are made. I do question whether we are really given a real choice. Disturbing ethical examples abound. For instance, a woman I knew became pregnant recently and she had tests to determine if her child would have Down Syndrome. The test was positive. She was given the results and a business card with a scheduled abortion date. Is this really a choice? Statistics demonstrate well over 90% of women choose abortion over having a child with Down Syndrome. To me, this is perilously close to a form of modern day Eugenics. Does using the word Eugenics make me an extremist or do I hold a simplistic viewpoint for using the word? I think not. Let me use one more example. A young man or woman in their early twenties is in a car accident. Suddenly they must learn to adapt to a high level spinal cord injury. How will this person adapt or will they choose not to adapt? Will this young person be told about sip and puff power wheelchairs and the world of adaptive sports? Will this person meet another well adjusted high level quadriplegic who is married and has children? I doubt it. I think it is far more likely this person will be shipped to a rehab center and quietly sent to a nursing home weeks or months later. Perhaps this person will become like Christina Symanski who chose to die. Again, I ask the question why. Why do some people choose to die? Why are some encouraged to die? Why do we have the resources to end the lives of those with a disability and in fact laud such people for their courageous actions? Meanwhile people like me, those that choose to live life to the fullest encounter discrimination decades after the ADA was passed. People like myself, disenfranchised and without power, are perceived to be an economic burden. Theoretically I share the same civil rights as others but I do not live in the world of theory. I live in a world that is hostile to my inclusion. I live in a world where I am repeatedly told I am a difficult person. Why am I difficult? I am difficult because I assert my civil rights. I point out injustices that make others uncomfortable. I am not silent. I am an uppity cripple. Here the obvious allusion is to so called uppity niggers that asserted their rights, civil rights no person would ever question today. Well, I am not near there yet. My civil rights are open to debate.
In all seriousness, it is very hard to express how hard it is for me and others with a disability to simply leave our homes. I know I will be stared at. I know I will encounter needless architectural obstacles. I know people will say demeaning things to me. Worse yet, none of these people that thoughtlessly violate my civil rights consider themselves to be bigoted. They are just "curious", "interested" or want to share their thoughts me. No consideration is given to my life, the inability to ever fit within the mainstream. I am public property. My existence open to good natured debate. Maybe this makes me an extremist. Perhaps Elizabeth is correct. I do live an extreme life. People with a disability are socially isolated. People with a disability are unemployed in overwhelming numbers. People with a disability are far more likely to be uneducated. People with a spinal cord injury like mine are less likely to marry and have children. People with a disability often cannot access the health care system. People with a disability are likely to live in an institution. I could go on but my point is clear. I do in fact live an extreme life.
15 comments:
NO, NO, NO, I do not think your views are extreme. They are essential to fight the other extremes. DO NOT GO SOFT. Just understand and have compassion for those who are in the situation where they, and they alone, not a Greek chorus of urging like those idiots on that show, decide that it is enough. The problem with allowing someone to decide that it is time to go is because too many opportunistic people jump on the bandwagon and who have a special interest in having someone die, because of inconvenience, monetary, sensationalism issues, get involved. And someone, something has to fight that very dangerous extreme. Some very well meaning people who have excellent points about choice in life maintaining measures don't see what the next step implications are.
There was a time that you couldn't get the doctors not to keep you alive in agonizing pain. Now they can't wait to pull the plug, especially if you can't pay for the care. Yes, it's scary. Someone how reason and interest in the individual and what s/he truly wants has to be found.
I did not agree with my dear friend's decision, but I knew why she made it. A lot of it had to do with money and being an imposition Sadly, her son who could have insisted that those issues were non issues to him, agreed with her. He wanted nothing to do with the type of care and expenses and attention she was going to need, and he was in no position to pay or help her. Her death was a windfall to him of major proportions that he is unlikely to ever see again. And she truly loved him more than life itself, her life, in particular and it was truly her greatest wish to give, not hurt him. She also could not stand any helplessness and refused to even hear of any alternatives. She was a strong, powerful woman, and did as she pleased, right to the end.
But she was wrong. Wrong because she has perpetuated a thought that goes beyond her life span and permeates down to her son and her grandson whose mindsets are now molded by her choice.
There must be some way to understand other views, without panning them, and understand while going to the fundamental problem with with assistive suicide and withholding life saving measures.
But we need more folks like you who are strong enough to make this sort of a stand because it scares me what directions things are going, particularly with organ transplants, cuts in health care, directives, etc.
Bill, I'm sorry if I offended you or forced you into a defensive posture on your last post. My own words were perhaps too simplistic, typed rapidly blog-style as a quick response to your careful post. I think you and I have far more in common than my brief comments and your long response -- namely, an exquisite sensitivity to the world of disability -- for me, in my seventeen year old daughter and for you, personally. I have experienced nearly every single thing you've described in reference to discrimination and cultural condemnation with my daughter and wouldn't/didn't argue otherwise. However, I do instinctively balk when people in the disability world quickly couple "eugenics" with individuals' responses to their unique experiences. I would say that a vicious cycle of media attention and then institutional attention/government intervention infringes on the private decisions that people make about issues that are just that: private -- intense -- deeply complex. Of course, I object to a doctor giving a woman with a child that has Down Syndrome a card with an appt. for an abortion. Of course I do. And my mind is horrified by a woman who chooses to kill her grown son with severe autism because she sees "no way out." But I refuse to judge those women in the way that I've seen others do in the blogosphere as "wrong," or as monsters to have done so. I'll go out on a scary, shaky limb by saying that I completely empathize with them -- utterly and completely.
As for your claim that I'm some sort of "rugged individualist," pertaining to my views of death, I'd say quite the opposite. Perhaps by force of will and facing it every day, I look on death as a continuation -- part of an endless cycle -- that doesn't remove sorrow but rather intensifies connection, my own connection to my daughter --
No, Bill, your views are not extremist; my views are not extremist. Our perceptions and takes on the views of life in the world of disability are a function of our personal experiences, our reflections, our lives. I believe there are few rights and wrongs as we and others face our ultimate challenge...the acceptance of death and dying. This is a personal experience and not subject to review by the world. I could be totally wrong, and often am, but this my personal belief ...it is not a worldview that I would ever suppose to impose on others nor would I ever have them impose their on me or my son. Our views are shaped by many factors and thankfully the diversity of such views reflect the diversity of mankind. I always appreciate and reflect on your views of this world we share...
Elizabeth, I was in no way insulted. You inspired me to hone my views more carefully. For this I thank you. I have always bemoaned the divide between disability rights activists and parents of children with a disability. Together we could make a formidable political coalition. No doubt we have more in common than issues we differ with. I am sure we also agree the mainstream press does a horrible job with disability related news--always catering to raw emotion devoid of substance.
We need to address the issue of Eugenics. After a rush of publications on pre natal testing there has been a lull. It is my opinion a form of Eugenics is being practiced today. Here the work of Barbara Farlow comes to mind.
The "rugged individualist" was not a reference to you or anyone else for that matter. Instead it was a comment on American culture in general.
Catherine, Among bioethicists my views are indeed considered extreme or radical. I would note that I often feel like a lone voice in the wilderness. That is, I feel very much alone. But not to worry. I have a big mouth and refuse to be silent.
Phil, I am not so sure my views are not extreme. Every day I am put into extreme situations no other bipedal person would be forced to endure and or rail against. The afront on my civil rights and all those with a disability is a harsh reality. It has made me hard man in some ways. Personal experiences are indeed important but we do not live in a social vacuum. As always thanks for your comment.
I'll just tell a short, okay not so short story.
Every evening during one semester of college I would exit the hockey training facility and stand there awaiting the campus bus. At the stop was a fellow student who was a paraplegic. We'd both stand there listening to our MP3 players and not speaking, because that is what college kids do at the bus stop. The bus would come, I'd jump on, and she'd sit there waiting for her transport van.
For all of Sept and Oct this happened four days a week. I was down on the athletic campus for hockey, she was down to see a therapist.
Then one November day it was dumping snow and the traffic grid was shot to hell. We both stood there with the snow swirling around us. Finally with nothing showing up after 30 minutes I decided to go stand in the lobby of the ice rink. Of course I invited my fellow student (as a hockey player my student ID would unlock the doors, a non hockey player couldn't do that).
I knew shit about wheelchairs. Not even knowing I should give her a moment to remove the brakes before I gave her a push. With four inches on the ground and no sign of anyone to clean the sidewalk I had to push her into the lobby.
In the lobby I actually talk to her for once and discover she's from Singapore. We end up talking about hockey because it fascinates her (figure skating as well). I also ask a number of stupid questions about paraplegia and wheel chairs. I knew nothing, I knew about things like ADA but I've never had any kind of formal education on disabilities or the intricacies of it.
She was patient and answered all the stupid questions with grace and eventually her van came.
After that we started talking at the bus stop. I learned all kinds of fascinating things, like how the University sticks the buttons for the automatic door in the wrong place. If you push it, you can have to wheel yourself back rear quick or get smacked with the door as it opens.
I introduced her to some other hockey players who also asked a number of stupid questions as well. She handled all of them with grace.
She ended up coming to some of our practices. She'd always wanted to be a figure skater as a child. So one or two us would take her out on the ice and skate with her. We dug up the sledges from some deep, dark storage unit (filled with spiders, I still remember the damn spiders as they very big and very numerous) since it appeared our sledge hockey team when defunct back in the 1980s and no one ever touched the equipment again.
It turns out the girl was a genius at math. She's now engaged to one of the goalies (he only passed math due to her tutoring).
The point of my rambling story is to contrast attitudes. One of course only knows you via text on screen, so its hard to make an accurate judgment. However consider your talk of being a hard man, your quote of:
Worse yet, none of these people that thoughtlessly violate my civil rights consider themselves to be bigoted. They are just "curious", "interested" or want to share their thoughts me. No consideration is given to my life...
and I mentally contrast the attitude of my friend versus you. If when I'd asked her about those stupid questions she'd snapped back at me and told me I was an unrealized bigot. I'd imagine the conversation ends there and instead of introducing her to other hockey players, I'd have just mentioned something to the team about the girl at the bus stop being a 'real bitch'. A very different outcome.
It's hard to put into words, and once again comes only from text, but I see a blank spot in how you complain about no consideration to your life, while not always giving consideration to how others may lack exposure and education might make people ask dumb questions or be overly curious.
It's one thing to rip up the airline for its failure to get a straight back into the plane in a reasonable amount of time. Regarding how you go after Mr. Johnson though, that's not as acceptable to me. You go after him by undermining his grasp of the situation:
When I read Mr. Johnson's editorial here is what I thought: why has no one spoken to him about brain scape or the myriad of ways he can communicate.
How do you know Mr. J doesn't know about any of those ways? Then:
Mr. Johnson can continue to have a rich and vibrant social life.
You're moving to telling Mr. J how to live his life. He shouldn't kill himself, he should go live a rich social life and be a symbol of what a respirator paraplegic can do. This is an oversimplification, but if you can tell Mr. J how to live is life, that opens the door to others telling you how to live your life.
The deal is you made it your journey to be a fighter and confrontational. When he doesn't live up that ideal, you attack his decision to continue his journey in another fashion (as an atheist I believe the next stage of the journey is oblivion, but he may feel otherwise). You might not mean to attack him, but your writing style often seems to drift in that direction.
You get outrage when other people tell you how to live, when you refuse to meet their ideal of a quiet cripple. Yet can be rather savage on people who want to walk again or want to donate their organs to others. You have your ideal and it can be rather inflexible. It's only thing to inflexible in the social sphere (that straight back needs to be on the plane promptly) but another thing to me inflexible with others private spheres (it's his kidney, he gets to do what he wants with it). I respect your attitude (and consider it necessary in many cases) in terms of conforming to the ADA, but I tend to refrain from commenting when you do articles on things like Mr. J since your commentary on private sphere decisions tends to get my inner libertarian rather angry.
I find myself wondering how you'd get along with that girl. She wants to be bipedal in the worst way. She's going for a MD so she can do research on neural regeneration and she made us all swear that the day she can skate, we'll all get together so she can play hockey with us. You in part appear to deal with your disability by being a fighter. She in part copes by telling herself she'll reach certain goals in the future.
Perhaps someday you'll link to an article she wrote for a science journal and savage the "cure industry" and you'll see me go full nuclear in the comments.
So for what the comments of some faceless person you don't know on the internet are worth, I just ask you to consider how aggressive you are in the private sphere and how it impacts things like being called extreme or your isolation.
For example, you write:
I do not visit any of my friends homes--friends who do not have a disability that is because I cannot enter their home.
I'm curious as to why. I live on the second floor and my complex has no elevator, yet my paraplegic friend dropped by frequently for wine and cheese nights on Friday. One of us fireman carried her up the stairs, another person got the wheelchair. I valued my friend's attendance at these events and did things like rearranging furniture so the wheelchair could make it from the living room to the bathroom without help. She respect the fact I was getting a great place at a great price (for a college town anyways) and never complained about the stairs leading to my door. To me it was a two way street. I ditched a love seat in the interest of wheelchair room and made sure not to leave laptop chargers and the like out as obstacles. She took the rides up the stairs with good humor. I'd be curious as to how you see that arrangement.
A Caine, Thank you for your long comments. I am not sure how to effectively reply but will try. On your story about a paraplegic and the bus in what I assume was a college town. Did you ever wonder why you were taking a campus bus while the person you met was taking a transport van? Did it cross your mind this could be considered separate and inherently unequal? As to asking many questions, it was not her job, mine or any other person with a disability to educate you and the public about disability. Yet I routinely do this two decades after the ADA was made the law. The learning curve is slow, way slow, because in my experience most people do not think of the ADA as civil rights legislation. Regardless, I have learned to have great patience--especially with children who are openly curious.
In have repeatedly stated I did not intend to attack Mr. Johnson personally. However, I do question the choices made available to him. Will disability be portrayed as fate worse than death? Will he face financial ruin if he chooses to live? These questions concern Mr. Johnson, myself and countless others with and without a disability. I am not telling Mr. Johnson or anyone else how to live life. I am pointing out gross social and economic inequities exist and how they affect the lives of those with a disability.
I have no idea how I would get along with the woman you have befriended. I suspect a gender and generational divide exists. Some paralyzed people are indeed interested in walking again. This holds no interest for me and yes I do rail against the cure industry. What you do not think about is why. Why do I rail against the cure industry? I have no issue with the search for a cure--it is a worthy goal for researchers. I do question why are funds made available for such research but not for research or social supports for the here and now. Read my posts about the exoskeleton for instance. Today rehab stays are shockingly short, wheelchairs, adaptive sports gear and appropriate cushions for skin care beyond the means of too many. This is the sort of social problem this blog is designed to address.
A Caine, I am a bit taken aback by your second comment. In my younger days, pre ADA days, I was carried in and out of many buildings. As time went on I realized two things. First, being carried is potentially dangerous. I was dropped more than once. I was hurt multiple times and this was pre ADA when I was young. As a middle aged man being carried is dangerous and more to the point against the law. If I was dropped today and bruised my skin I could spend months in bed. No social event is worth such a risk. 2. Being carried is demeaning. Being carried is not legal and undermines the ADA itself. I do not think you are making what is known as a "reasonable accommodation" by moving furniture. I know no one who is willing to be carried "with good humor". To me your words smack of age old paternalism. Did you ever consider holding the weekly wine and cheese parties at an accessible location? Did you ever think about the larger implications r.e. carrying your friend? I will end with my own story. When my son was in pre school the best school near us was in the basement of a church. Despite being grossly inaccessible I sent my son to this school. I crawled down and up the steps every day. I believed my actions might I shame the school owner into an elevator. I put my son's needs ahead of my own. Fast forward ten years. I bumped into the school owner. She asked about my son and told me that the church was renovated. No elevator was installed. The reason shocked me: the church believed all people with a disability could simply crawl up and down the steps like I did. There was no reason to spend money on an elevator. We people with a disability can crawl.
I am surprised that church was permitted to be renovated without an elevator or other way for someone who could not do stairs. Was that done without compliance to ADA rules?
People claim that we have a "right to die". From that premise, it makes sense to make help available to people with disabilities who cannot kill themselves as easily as people without. But that premise is wrong, because if a non-disabled person tells a doctor that they are looking for a way to kill themselves, that person will be brought to a psychiatric ward and kept there, even against their will, until they change their mind. A person with a disability will be encouraged. Should there be a right to die? I don't know, that would be a long and complicated debate. But however we answer that question, we should answer it in the same way for those who live with a disability and for those who don't.
Catherine, My experience with Churches in terms of wheelchair access is overwhelmingly negative. I would go as far as to say the Church is a hostile to disability. Exceptions exist of course but I do my level best to avoid Churches. I think the Church as a private entity considers itself exempt from the ADA. I know the Boy Scouts of America has fought tooth and nail against the ADA.
Louna, Yes, a double standard exists for people with a disability. If I state I want to die I could easily find many physicians who would honor my request. If I was not paralyzed I would indeed be sent for a psychiatric evaluation. This is a deadly dichotomy.
Have you followed the Tony Nicklinson case at all? It's just blown up again in the UK, because his appeal to have someone legally kill him comes to court tomorrow, and there was a major documentary on his case this evening, which all the press are covering:
http://www.guardian.co.uk/society/video/2012/jun/18/locked-in-syndrome-tony-nicklinson-video?INTCMP=ILCNETTXT3487
He's being interviewed on twitter, by a Guardian journalist, who's putting readers' questions to him:
http://www.guardian.co.uk/society/blog/2012/jun/18/locked-in-syndrome-tony-nicklinson?newsfeed=true
I just wanted to bring it to your attention because it's a debate I think you could make an important contribution to.
Hannah, Periodically I do comment about stories in the UK. I am familiar with Tony Nicklinson. I struggle to understand the nuances involved and find people like Debbie Purdy and Tony Nicklinson confusing. That is I understand the UK laws quite well. I have no doubt they could find a way around the law but choose to advocate instead of act--that is end their life. There is much I do not understand culturally. And I once lived in London so I know a bit more than your average American.
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