The BBC has reported Tony Nicklinson has died just a week removed from his failed effort to convince a British High Court to allow a person to give him a lethal prescription. I have followed the stories about Nicklinson who was "locked in" after a stroke in 2005. He was very clear he considered his life a living nightmare and that he wanted to die. I found Nicklinson's comments about his life and suffering distasteful. I also believed his words were destructive to people with a disability as they reinforced the antiquated idea that death was preferable to life with a disability. What I found hard to fathom was Nicklinson's contention that his life was a living nightmare never changed. He was consistently miserable and believed his suffering was singularly unique. Yet Nicklinson was in many ways lucky. He had a wife who was supportive and two children that clearly loved their father. He did not go into bankrupt paying for care. He was able to communicate even though it was a tedious process. I am not dismissing the fact being locked in is extra-ordinarily difficult. I am merely pointing out that Nicklinson was not singularly unique. In fact the only thing that made him unusual was his consistent misery. And the media loves miserable people with a disability. Pity stories abound and a man like Nicklinson provides great visuals. Pity the poor man pictured with his wife and children. No mainstream media outlets write about all the other people with comparable conditions that move on with life--and this is exactly what the vast majority of people with a disability do. We move on, adapt and lead ordinary lives. This does not sell newspapers. This does not make people cry. This does not make people thank God they can walk and talk and do not have a disability. This line of reasoning is maddening. And this is exactly why I have refrained from writing about Nicklinson. He pronouncements about his life being a living nightmare simply made me mad. Apparently I am not alone. This morning I read "Self Pity is Still Not Lethal! On Tony Nicklinson" written by Miss Dennis Queen (was Claire Lewis). See http://missdennisqueen.livejournal.com/49897.html She wrote:
Know what it isn't easy for some of us crips. To sympathise, I mean - Tony's attitude is quite offensive.I am tired of the pitiful debates. I am exasperated with this dishonest man who admits denying himself a better life but blames it on his body. I agree Tony needs to see his doctor - not for a lethal injection, for some anti depression support and a kick up the proverbial about how life can get much better if he puts down his fear and self loathing and lets it go.Come on Tony! Give life a go - almost all of the rest of us manage without suicide. Try living before you throw your life away dude!
I was thrilled when I read the words above. Miss Dennis Queen has been one of the most eloquent and pointed observers on disability rights and assisted suicide in Britain for quite some time. Once done illustrating how far off base Nicklinson was Miss Dennis Queen went on to state "The reasons for 'helping' disabled people to kill themselves are flawed and rooted in prejudice, internalised oppression, lack of independent living and scare mongering / fear about the future". At issue is not a bodily deficit regardless how severe or mild it may be. At issue is the social response such a body prompts. Thus I do not in any way want society to "help" me. I especially do not want any assistance with my death. I simply want to be equal--I want others to respect my life. I want people in this country to enforce the ADA with rigor-- a law that is not about architecture but rather the civil rights of people with a disability. In short, screw pity. Let's reframe the discussion to what is is really all about--civil rights.
I have a hard time this stuff: there is Nicklinson's self-perception that his life was intolerable and that he wanted to die...I am sure that it would be of no value for me or anyone to tell him that his nightmare was not really a nightmare...it's his perception.
ReplyDeleteOn the other hand, severely disabled people and their caregivers are perfectly right to share their perceptions that their lives and the lives of those for whom they care are valuable and innately respectable.
Suffering and one's inability to tolerate it are purely subjective states of mind ... they are root, primitive feelings not often open to be swayed by cognition.
I agree with Phil and believe it's an enormous -- and perhaps erroneous -- jump to claim that this man's suicide does a disservice to others who are disabled, whether equally or not. While I understand your frustration and that of the woman you quoted, I can't agree with your judgment that Nicklinson's attitude is "offensive."
ReplyDeletePhil, Nicklinson is a tragic case--and the tragedy was not his disability but decision to give up on life. He provides a striking contrast to Bauby who wrote the Diving Bell and the Butterfly after he had a comparable stroke.
ReplyDeleteElizabeth, I disagree Nicklinson's public campaign to die and change assisted suicide legislation was not a disservice to people with a disability. At a macro level it was a bold statement that life with a disability is not worth living. It emphasizes a medical model of disability and reinforces existing cultural biases. There is a reason people with disabilities are referred to as "scroungers" in the UK. There is a reason draconian budget cuts are designed to hurt the most vulnerable such as those with a disability. Nicklinson's voice was heard and he was lauded for his desire to die. No one lauds the person with a disability that wants to live. No one wants to provide much less pay for adequate social supports that make life possible for a person with a disability. And what of the men and women who took care of his daily needs. What lesson did they learn? People with a severe disability want to die and have no life. It is a question of representation--only the very small percentage of people with a disability that choose to die views are aired and discussed. Think of all the articles about Nicklinson and compare that with the very few that discussed disability rights. The dichotomy is striking. Did anyone discuss the gulf between Nickinson and Bauby? And what of the double standard--why was Nicklinson treated one way and a person without a disability treated radically different. Nicklinson gets support to die but not the man who expresses the same feeling without a disability.
You're right about taking the issue public, I think, and the consequential "bad" publicity for disability in general. It is in some measure offensive, made more so by the headline-grabbing nature of it. Where are the headlines about people with disabilities living productive and happy lives?
ReplyDeleteI wonder why no media in Great Britain compared the man to Stephen Hawking? When we do that, the question then becomes attitude and psychological health. Does that mean those in deep depression, but yet physically intact, should be allowed to line up for a lethal dose of the drug-du-jour?
As Abraham Lincoln said, "Most folks are about as happy as they make up their minds to be." Granted, if you're paralyzed (and I'm a near-quad), it takes a little more work to be happy, but it can be done.
The man had an agenda, and it was to "work" for assisted euthanasia. Any person, with or without a disability, can be a suicide, excepting perhaps those in comas.
Since I believe in freedom and in the exercise of free will, I cannot begrudge him too much for working for his agenda, but I can say his agenda is wrong, wrong, wrong and works against an open, accessible, democratic, and humane society that values every citizen.
Gary, You make a number of good points. I agree Nicklinson had an agenda and permitted himself to be used by the media to get what he and others wanted. I think he was a selfish man who could not think beyond a medical model of disability. His body he felt had failed him and hence his life was over. This is well out of the norm. As you and I both know life after paralysis is simply different. One can choose to be miserable or happy. Much of this is dictated by one's social and economic situation as well as education.
ReplyDeleteI think the more interesting comparison is not to Hawking--hard to compare anyone to him--but with Bauby who wrote Diving Bell and Butterfly. They had very similar strokes. One man chose to write a great book and Nicklinson chose to focus on hastening his own death. Ugh, what a waste. So sad.
I wrote my thoughts about Nicklinson here a few days after the ruling (work and other matters stopped me from writing immediately afterwards). I had not realised he had already deteriorated by the time I wrote and was in the process of taking a Symanski-like way out.
ReplyDeleteTo be brief, I have followed other disabled activists' attempts to talk sense into Nicklinson's head, notably a friend of Lewis/Queen's who suggested that Nicklinson was agoraphobic and depressed. He rebuffed her suggestions that he might get out and do something with such trivialities as the possibility of insects landing on him while he was out. She also established that he was capable of operating a powered wheelchair, but did not want to because he did not want to go out.
Nicklinson did not have "locked-in syndrome"; someone who has that can move nothing except their eyes - there is usually no facial expression. His condition was actually better than Stephen Hawking's, as the latter has deteriorated considerably over the years and can use only his cheek muscle to operate his computer.
Matthew, As always I appreciate your comment. Of course Nicklinson was depressed. What few want to discuss is the double standard that exists between those with and those without a disability. I had not heard that Nicklinson did not have locked in syndrome and was capable of some movement. I am not surprised disability activists failed to get through to him. The issues I would guess are far more complex than the simple statement I want to die that is reported by the press. Based on what I read by Nicklinson he firmly believed when his body became disabled his life ended. This is decidedly out of the norm. I read your post and you are correct that even if someone assisted him in ending his life they would have faced virtually no punishment. I vividly recall Daniel James parents were barely given a slap on their wrist when they took their son to Dignitas. I cannot help but conclude Queen/Lewis is correct--he was a selfish man.
ReplyDeleteTo me, Nicklinson's story is a great tragedy -- not his disability, but the way in which he conspired with the social forces around him to give up on life.
ReplyDeleteFrom what I've read, before his stroke, he was a very athletic, boisterous man who liked to fill up a room with his energy. After his stroke, he talked about how painful it was to go outside and have people treat him as though he weren't there -- as though he were worthless and had no capacity for thought or feeling. Though I don't have his disability, I can empathize with the pain that kind of swift change in identity and position brings. What I find so tragic is that he no longer saw himself as a powerful person who could fight those social forces and have pride in himself; he allowed the contempt that others had for him to become self-contempt, to the point that he couldn't see that he had something to offer other disabled people: his voice, his support, his activism.
All of that makes me very sad, but my sympathy for him stops right at the point at which he refused to see how his campaign would harm other disabled people. I get why he was grieving his losses; what I don't get is how he couldn't see that it wasn't just about his life, but about the impact of his campaign on other people's lives. When all was said and done, he ended his life under his own power, so publicly campaigning for the right to end his life -- in a way that only reinforced the cultural idea that death is preferable to disability -- was ultimately a fruitless endeavor that potentially harms others who very much want to live.
I have a lot of compassion for Nicklinson's excruciating mental suffering, but I don't sympathize with his making it a national problem.
Rachel, I have refrained from tying to analyze the character and motives of a man I never met. Adjustment to a disability is never easy--it is as one person in the film Murderball stated a "mind fuck". I have been paralyzed 35 years yet I am always shocked when people like Nicklinson publicly state they want to die the are lauded as brave. Real bravery to me is dealing with bigotry on a day to day basis. And that is exactly what people in disability rights do.
ReplyDeleteI had heard his story recently and listened to what he had to say about his life on the radio. Of course, I am not in that situation, however, I kept thinking, if you can communicate, especially the way he is able to, and there is now so much out there to keep you occupied, computers, TV, movies, even books in all different formats, why would you need to die? Especially with a supportive family, are you saying that they aren't enough to stick around for? I would hope if this happened to me, I would still feel as though a functioning brain and a way to view the world and communicate were things worth living for. Of course, I work with children every day who have to live life with many different disabilities and I see how they relish their lives.
ReplyDeleteLisa
Lisa, Many people have far more difficult physical and cognitive issues to cope with and yet they live and thrive. It galls me the media makes people like Nicklinson into heroes. I read much of what he wrote--not impressive.
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