American society loves people with a disability that want to die. These people are heros. These people are lauded as brave. Their stories are gut wrenching. Their writing is powerful. The latest such person with a disability that is being belatedly embraced is Christina Symanski who I have already written about. Symanski died last December but few noticed her death outside of her immediate family and those in the disability community that read her blog Life Paralyzed. I was deeply touched by her writing and disturbed by her death. I have tried to give a balanced perspective on the social significance of her death. This is exactly what you will not find in the news stories that I have read over the last few days. The first newspaper to write about Symanski was the New Jersey Star Ledger. This story was picked up by the UK's Daily Mail and then the Huffington Post. I expect the news of Symanski's death will go viral over the weekend and be picked up by hundreds of news outlets. I have no doubt she will be lauded for choosing to die. Proponents of assisted suicide legislation will bemoan her heroic suffering--Symanski slowly dehydrated and starved herself to death over a period of two months. Comments from readers on line are predictable--if we can euthanize our pets with dignity why did Symanski have to suffer a horribly painful death. The news stories are maudlin in the extreme and devoid of any serious discussion. For example, the story in the local NJ paper adds details such as Symanski's last meal. The Huffington Post notes as an artist Symanski had decided she had suffered enough--the assumption being artists need to suffer to produce great art. The Daily Mail went into great detail about how Symanski was paralyzed and saved by her boyfriend who she was about to move in with.
None of what I read in the newspaper accounts of Symanski's life and death discussed a single important issue. In my estimation, they followed a standard formula when writing about disability. Disability is bad, very bad. Disability is a personal tragedy. Some people with a severe disability would prefer to die. This desire to die is a perfectly reasonable and rational response. People with a disability have the right (duty) to die. This formula is more pronounced and provides great visuals when a vivacious young woman such as Symanski is involved. Big before and after pictures are included in the news stories. Symanksi with a big beaming smile with her boyfriend juxtaposed against her alone post injury sitting in her wheelchair. The not so subtle message is life was awesome before paralysis and horrible afterwards. Too jaundiced a viewpoint perhaps? I think not. For instance, in the Daily Mail story the following quote by Symanski is produced in large bold print: "I couldn't handle the thought of sentencing Jimmy to the hell that had become my life. I wanted a better life than I could give him, for him. I loved him too much to be selfish. I had to let him go, even if it killed me, and that's exactly what it did".
What strikes me about Symanski is how decidedly unusual her reaction to paralysis was. In her blog she wrote that she was willing to wait five to ten years for a cure to spinal cord injury. After this period of time, she would reassess her situation. This line of reasoning is well outside of the norm and highlights the dangers of what I identified as the Reeve School of Paralysis in my last post. A period of depression after spinal cord injury is a common reaction--I will not deny a spinal cord injury can be devastating personally and physically. Believe me, I know. But virtually everyone, the vast majority, adapt and move on with life. Some do so with flair, others struggle. What strikes me is how anonymous we paralyzed people are, that is we who simply move on regardless of our level of paralysis. I know quadriplegics with a higher level of injury than Symanski. I know a physician who has a level of injury similar to mine. I know business men and adaptive athletes all of whom are paralyzed. You do not read about us. We are boring and defy conventional norms that sell newspapers. Ironically, we are the majority. According to the latest statistics, there are 1,275,000 people in the United States living with a spinal cord injury. More generally there are 5,596,000 people who report they live with some sort of paralysis due to other conditions such as stroke and Multiple Sclerosis. In 2010 I read about one person with a spinal cord injury that chose to die--Christina Symanski.
The fact is more people are living with a spinal cord injury than ever before. Virtually all those I meet say the same thing--paralysis is the least of their problems. Access to health insurance, employment, mass transportation and housing all pose significant barriers. The result is people living with paralysis have a significantly lower level of income. This is the sort of story I want to read about. Instead of reading about the abundance of needless barriers we paralyzed people are forced to deal with media outlets focus on Symanski. Her post injury life is perceived through a lens of suffering. And Symanski did indeed suffer. She experienced autonomic dysreflexia, a serious and dangerous problem for people with a high spinal cord injury. However, she was hardly alone--many people with her level of injury experience what she did. None of them chose to die. No story about Symanski addressed why she could not teach as she had before her injury. No story discussed why she was forced to live in an institution for a year. No story discussed how she escaped institutional life, a remarkable feat by itself. No story discussed whether her unconventional death was legal. No story discussed her art work as a means of developing a viable income. No story questioned why she and her boyfriend could not have lived happily ever after. Such a discussion and asking the hard questions I pose do not fit the script, the narrative of disability we thoughtlessly accept. So yes Symanski's death is a tragedy and I mourn for a woman I never met. I feel bad for her family and loved ones. My sorrow however is not on the life lived post injury but rather on the life she chose not to live. What bothers me the most was her refusal to adapt and her failure to connect with the vibrant disability community I have come to know and love. Life is a gift, a real blessing with or without a spinal cord injury. It bothers me to no end others cannot see what is so obvious to me.
21 comments:
William,
Excellent post. We in the disability community deserve real answers to every question you posed. I love your thoughtfulness re: these issues.
How can we publicize this post? How can we spread your words, your viewpoint, your testimony? What can we do?
I noticed that someone in the comments on the NJ.com article compared Symanski's situation to that described in the book "Johnny Got His Gun" by Dalton Trumbo, which is about a soldier injured in WWI who lost his limbs, eyes, ears and mouth and is thus condemned to a totally isolated, bedridden existence in which he can only communicate by using his head to dictate Morse code, and immediately tells his carers to kill him. The story is fiction, although Trumbo read of a soldier (who was Canadian, although he made his character American and projected his own opinions onto him) who suffered a similar injury in a newspaper.
I thought the comparison with Trumbo's character was absurd - Symanski could see, hear, speak, eat and drink, use a computer (OK, they didn't exist in 1918), paint, go out ... but also, Trumbo was imagining, perhaps, how anyone would feel if they were in that situation without having experienced physical disability himself. The closest I can think of to a real-life example of the situation in that book is that of Lynn Gilderdale, and although she eventually did kill herself, she stuck it out for nearly 17 years.
Healthy or able-bodied people greatly underestimate what people will endure and for how long. I suspect that if you took Lynn Gilderdale's story as fiction to a publisher, it would be rejected as beyond belief, a ridiculous concept, because let's face it, nobody would stick out her situation for that long - they'd kill themselves after 17 months, never mind years, like Joe Bonham in Dalton Trumbo's book would have done. (Of course, it's not fiction anymore, but that's beside the point.)
By the way, the Mail's story is typical for them: sensationalist and distorted. I read much of Chrissy's blog (when Jenni Taylor posted a link to it in early October 2011) without an inkling that she was going ahead with her suicide plan. I could tell that her decision wasn't due to her love life, let alone her desire to "free" her old boyfriend who she had known for just six months before her accident but had not had a serious relationship since. That suggestion must have caused quite a bit of distress to him.
Sadly, the Symanski story is just another "hero" fantasy theme...science fiction. The public does not criticize their heroes, especially the dead ones. The public does not question those who want to unburden society of their illness nor does it question the lack of supports for the disabled. The benign indifference of people refuses to acknowledge those who accept the disability, make with their lives whatever is possible and treasure who they are. Disability is not indignity nor a curse...heroes do not step out of this world without validating the perception that some "lives are not worth living." There is no heroism, no story worth noting...leaving life is not valuable.
Your insights are so valuable to me!
Phil, I like the phrase "benign indifference". This is a significant problem. No one is against disabled people--oh I have heard this so many times. But no one exactly advocates for people with a disability either. Our rights are not perceived to be civil rights and here is where the phrase benign indifference fits. We applaud those that choose to die rather than live and refuse to provide adequate social supports for those that are ready willing and able to adapt.
Matthew, I do not have the heart to read the comments after articles. I skim them and am usually appalled. The comparison to Johnny Got His Gun is odd. I will go back and read this classic though. As for the Daily Mail, I recall reading it regularly when I lived in London. Typical tabloid journalism. Very strange they picked up on this story. But then again they had a field day with Daniel James a few years back. A cursory glance of Symanski's blog and on line book clearly demonstrate her death was tied to her physical condition and social isolation. She did not kill herself because she broke up with her boyfriend.I am not sure why the Daily MAil story upset her sister so much. I would have taken greater exception to the story in the Huffington Post.
William: I am surprised that as a sociologist you are not already aware of what 12 inches, or 24 comes to, and how small that is (your post would have to be a printed suppliment as even the Guardian Extra on Sunday have shorter articles than it). This in turn makes a culture where after the 5W1H lead, you have 1 or 2 sentences to bring out a specific personal interest topic, one which the audience can identify with. Loss can be related to. Having to live in an institution, if you can put that and her getting out of it in 2 senences with 24-28 words total, then please help these poor journalists. Complex issues do NOT get in the 'human interest' section of the paper, whether in print or online, you don't get the history of one person's bullying in the workplace due to a skin condition and the 14 legal actions they took, the counters, the company policy et al next to a beet which looks like a goat. I agree they are issues that academically should be looked at. But when the 'Health Section' of the paper means 'Wellness' you are honestly shocked? You honestly feel that the same companies owning these papers who put on TV shows and movies showing SCI's in hospital transfer chairs have an education about SCI and/or want to educate others?
I will always support a person who makes a individual choice. You disagree with her. I assume you might not have agreed with her politics, her music likes, her food fav's, so why do you assume that she should have the same view as you? And worse that while you condemn the disability ghetto view (though, honestly, do you know a few hundred or thousand individuals whose lives dramatically improve with an injury or illness? And as the stats show that 90% of males leave females who have traumatic injury or illness, why attack the papers for showing what is the reality? Unless you have demonstrated another one? And if you know a human rights index that rates employers on percentage of disabled employed compared to per capita, I would LOVE to know), you condemn her for not being part of the Disability Bund.
Individuals. Yes? And thus individual views, individual choices. Your choice may not be to seek a spinal cord cure, but others might. And if that cure comes, you might not choose to take it. But villanizing someone for making a choice, one which affects them, it is a type of bullying and tyranny. She did not end her life blowing up a bus with a bomb, she did it with calm deliberation (by the way, the same way most seniors end up making that choice, something you don't seem too choked up about). It is a choice. And I will support her ability to make that choice, not simply because so often people or organizations think that because someone IS SCI or disabled, that they can choose for them.
I am sure the person that wishes to choose for you, and who condemns your choices will equally believe they are right. But anyone who tries to control the choice belonging to an individual is a bully.
William, great article (again...)
You describe people's attitudes and the trends of media coverage so well.
William,
I read about Christina on the CDRF site and realized I had viewed her instructional videos on creative use of the iPad when considering purchasing one. I read her blog trying to understand for myself why such a gifted person slipped to such a level of hopelessness that she chose to die.
As a nurse & nurse practitioner who became disabled in an automobile accident during the orientation process for hospice nursing, I was disturbed, on some level that I don't fully understand, that quadriplegia is considered a fatal disorder that fits within the inclusion criteria for hospice care.
There are so many unknowns about Christina's life. And, William, you mention so many of the same questions that I had as I read her blog and watched her videos. I cannot imagine being a family member or the hospice nurse caring for her during the time leading up to her death.
Even though Christina's death by choice was a very private decision, the ethical and societal implications that you have so eloquently included in your blog are unavoidable to consider.
Thank you for discussing a situation that is still bothering me.
Elizabeth, I am not sure how to respond. In my last post you stated I was hateful and in this post I am a bully. Pointed comments do not bother but I am not sure what I did to generate such animosity. You are entitled to your opinion as am I. And more to the point so is Symanski. She had the legal right to end her life as she did. I have a right to point out the larger cultural significance of her death--this is what anthropologists do (I am not a sociologist). I have done my level best to be respectful of Syamanski and her family, to make some sense of her death. Yes, it was her choice to die. It is my choice to live. And the vast majority of people with a SCI do the same thing--live. Symanski is well outside of the norm and as such it is important to discuss the larger meaning of her death. I do not think this makes me hateful or a bully.
Carla, I agree there is much we do not know about Symanski. I never met her or her family or any of her friends. All I know is about her is based on her writing--and I am in the midst of reading her book I bought at Lulu. Like you, it is hard for me to imagine what she she and her family went through at the end of her life. To an extend, this reinforces that we need a vibrant hospice movement in this country. Far too many enter hospice care far too late, mere days from death. I truly appreciate your comments given your profession. Not enough people in the medical field express an interest in the social dimension of their work.
Thanks for mentioning her book on Lulu. The portions I have read so far provide some insight about her choices.
I remember as a young nurse being asked by a severely disabled man if I knew what euthanasia was and if I would be willing to do it. I was restarting his intravenous line and he wanted me to inject a large syringe full of air to hopefully stop his heart.
After the initial shock and rapid mental scan of my personal beliefs, I told him that I could not fulfill his request because I did not believe in euthanasia. I asked his nurse to call his doctor to express my concern for this young man.
He died less than an hour after I returned to the intensive care unit to care for my patients. This scenario has remained on my mind as over the years as I have come to realize that issues like this are very complex and do not have any right or wrong answers.
I strongly believe that people have a right to choose. I have several extreme sports friends who were paralysed due to sporting accidents. Two paraplegics and a low level quad with good function in his arms and hands. All get on with life very well and all would love a cure. They all work hard to maintain and improve the function they have, have families partners etc. To me they are who they have always been, my friends.
I certainly dont see Christina as a a hero, I see her as a person who made a choice to not want to live as a high level quadriplegic. I had a friend who committed sucicide for similar reasons and it makes me angry when people criticised him, what the hell do they know what his personal feelings and his interpretation of HIS quality of life were? It was his choice and his choice alone and everyone else should butt out. To me it has nothing to do with disabled being bad and abled being good, or burdens to society, it is all about the individual person and what their interpretation of their life is. I say how dare anyone tell me or speculate on what I should be doing with MY life. This is how my friend felt, and knowing him as well as I did I can understand the choice he made. To me it had nothing to do with heroism. There are no right or wrong answers, except to accept what a person chooses for themselves.
I can understand that it would make people with SCI feel that people without would think their life quality is somehow less. I dont know what the answer to that is. I dont see it like that at all.
I just believe people have the right to die if they they determine that their own life lacks the quality they personally need.
Caroline, I never wrote that Symanski did not have the right to end her life the way she did. The point I was trying to make was that her decision has larger cultural significance. Specifically, it reinforces the general belief that disability is a fate worse than death. The vast majority of people with a spinal cord injury lead a rewarding life and thus Symanski experience is far out of the norm. I worry not about people with a spinal cord injury but rather the reaction of others, especially those within the medical profession. Will they generalize from reading about Symanski and think all people with a spinal cord injury want to die.
I would very much hope not. There have been a few high profile cases arounf the world. However now more than ever people with SCI injuries are doing all sorts of things. The friends I know sure have C7 to through to L5 injuries and so are very active both at work and play. Surfing, skiing, having families. Yeah they would rather their accidents hadnt happened and have gone through some very real and difficult periods of adjustment, but they hardly strike me or anyone else as wanting to die. Far from it.
I dont think anyone would know or has the right to assume such things untill they are in a situation and we all know SCI can happen to anyone at any time. From what I can see each journey is personal, the side effects can vary from mild to horrendous and the way people deal is different. Assuming that all people with SCI want to die from a few cases to me is not a rational reaction.
Caroline, You wrote "Assuming that all people with SCI want to die from a few cases to me is not a rational reaction." I would like to think this is an accurate statement held by all. However, I think the reverse is true. Society lauds those with spinal cord injury that want to die. Examples abound. Society bemoans the cost of inclusion and denies social supports for those people with a disability that want to live a rich and full life. This dichotomy can be deadly. One last point, I agree every spinal cord injury is unique as are the complications associated with such injuries. But the prejudice all people with a disability encounter is the same, just variations on the same theme.
I dont live in the USA and I must say that among the people I know it would not be a common reaction. We have several people in the workplace with SCI and the support given to them by their peers and the company is excellent. Their contribution and expertise is highly valued. New buildings in this country are built with wheelchair access and facilities in mind and there are heavy penalties for parking in wheelcahir desinated parking spots.
I do understand though what you are talking about although it is not a sentiment that I have widely experienced where I live.
In one high profile case where a high level quad in a nursing home was seeking a court order to be allowed to die, the public debate was hot with many both for and against. The wish was finally granted but it defintely was not in the spirit of society being glad to be rid of him, it was hard fought by the man and the decsion was not made lightly by the judge.
I dont have any answers for you except to say that to me and many people I know, people in wheelchairs are a normal part of society and need to be supported and included in the planning of facilities for society.
Caroline, I am curious what country you live in. In the USA the vast majority of people with a spinal cord injury are unemployed. I never see others with a SCI in the workforce--ever. Any accommodation I have received in the work place was given begrudgingly. I have lost jobs because employers refused to make any accommodations. We have many laws designed to protect the rights of people with a disability. In my opinion these laws are largely ignored because the social mandate is utterly absent. The result is people with a disability are a class apart. This is a shock to people like Symanski that had no experience with disability prior to their injury. Too many are driven to despair, many end up in nursing homes. Sadly, few people think having people with a SCI is normal. I wish more people thought like you do.
I think from my sketchy memory of the case I allude to, the man's family did not support him wanting to die. I think though that in his case he had very serious ongoing health problems that required round the clock nursing, was venitlator dependent from memory, and I think he just got tired of the continual battle just to stay alive. He believed he had lived a good life and was tired and ready to leave, it was his personal wish for his very specific situation. He succumbed very quickly to an infection. Again a specific case that doesnt represent all people with SCI. Shame if people dont understand that.
I live in Australia. I can only talk about my experiences in the work place, and our organisation all new buildings are built with wheelchair facilities and is very supportive of people with disabilities. I cant speak for all organisations but certainly ours is very wheelchair friendly.
We also have a politician who is in a chair and he has been very vocal in the past.
It is sad what you are saying and am glad I work in an organisation that fully supports people with disabilities.
Caroline, The quality of life for people with a SCI in countries with a nationalized health care system is generally higher. I am equally curious as to what industry you work in. Sometimes corporations make a significant commitment to hiring people with a disability. Some fields too are welcoming.
Would you believe agriculture! They even try and make it easier for the people with SCI to do field work with modified chairs.
Mind you a farmer friend of mine ran his farm from a wheelchair and another high profile case where a cattle station manager became a quad in a helicopter crash and he still runs his very large cattle station. He also gives talks. We get inspiring stories like that. Personally I much prefer those sorts of stories. Helps people realise that people with SCI are no different from anyone else and have all the same dreams and aspirations and are totally capable with a bit of thoughtful modification.
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