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Monday, December 12, 2011

A Dangerous Love Affair with Autonomy: Symanski Life Lessons

In the last week Christina Symanski, a woman I have never met has not been far from my mind. Frankly, her death has me spooked. She lived well within driving distance of my home. She shared the same civil rights that I enjoy and yet she did not believe her life had any value. She was convinced her quality of life was abysmally low and that it was not going to ever improve. She thus chose to die. I understand what drove her to die as my struggle to live an independent life was very much in question last year. I was for many months utterly dependent upon my family and friends. This dependency left me despondent. A few things saved me from sinking into the depths of despair and depression like Symanski. Even in my darkest moments I knew powerful social factors were in play. I knew these social factors led many quadriplegics such as Symanski to believe their lives lacked meaning and value. They did not want to be a burden on family or friends. They mourned lost friendships and lovers. They had no job or prospects for employment. They feared life in a nursing home. They received substandard health care due to blatant discrimination. They were confronted with economic ruin. They were socially isolated unable to leave their homes. This is a grim reality that leads to an untold number of deaths.

When I cannot get a story like Symanski’s out of my mind I think of other people with a disability that endure. By endure I do not mean endure physical deficits but rather endure a society that would lead us to believe we are better off dead. Society embraces the dignity and autonomy of those people with a disability that want to die. These people have character! These people are brave! These people are applauded! This is an old story, a deeply ingrained stereotype that is not questioned. We truly admire people with a disability that want to die and shake our collective heads in confusion by those that want to live. This mentality plays itself out in popular culture. Hollywood produces films such as Million Dollar Baby that receive accolades. I was stunned not by the film but the audience reaction. When I saw it in the theaters the audience cheered when the main character Maggie was killed. A comparable film, the Sea Inside, was released in Spain. The courts are not free from anti disability bias. Jack Kevorkian eluded being convicted even though he killed people who were disabled and not terminally ill. In 1990 a Georgia court ruled that Larry MacAfee, a quadriplegic who was not terminally ill had the right to disconnect himself from his respirator and die. The court declared MacAfee’s desire to die outweighed the states interest in preservation of life and in preventing suicide thereby upholding his right to assistance in dying. Just the year before another man, David Rivlin, also sought court intervention in his wish to die. Unlike MacAfee who did indeed die, Rivlin changed his mind. In 2010 Dan Crews expressed his desire to die. He feared life in a nursing home and wanted to be disconnected from his resperator. I could site many other examples but the common theme remains the same—people with a disability that publicly express a desire to die rather than live become media darlings. They get complete and total support in their quest.

The stories above infuriate me. Why is it we rally around those people with a disability that want to die and yet refuse to provide the necessary social supports that would empower people with a disability to live rich, full and productive lives. This makes no sense to me. It is also downright dangerous in a medical system that is privatized and supposedly patient centered, buzz words I often heard last year. It makes me wonder though does “patient centered” allow, justify and encourage people, paralyzed people, to die? It is a euphemism that makes people in the health care system feel better? Symanski died because she found living with a disability intolerable. The unspoken corollary is she was driven to die because social supports were woefully inadequate and medical care substandard.

I remain stunned and saddened but hardly surprised by Symanski’s death. The social vortex Symanski was sucked into that led to her death has claimed the lives of many people with disabilities. Paul Longmore, a brilliant scholar and disability rights activist, wrote about what saved his life: “One thing saved me from that fate: the disability-rights movement. Our movement won my right to live independently, to work productively, to gain access to public places, to receive reasonable accommodations, and to obtain protection from discrimination. Our movement gave me the gift of a nurturing community. It offered me a positive, disability-affirming identity. It taught me pride.” How I wish Symanski could have met Paul Lngmore and others involved in the disability rights movement.


sbcallahan said...

I just wanted to share with you that I am in the process of writing about this young woman. The hesitancy comes from the opinion I hold will be misinterpreted and anger those who have more right than me to such an opinion. This did not strike me as an act of bravery at all. Some with my condition would "opt out" and be seen as such. It takes more courage to fight for not only yourself but that others may benefit from your fight as well. This event has made me examine the depths of my own heart more brutally. Thank you!

Phil Dzialo said...

I have given very much thought to your last three posts and I am at a loss as to form a cogent opinion. I am equally at a loss when I reflect on parents who make a conscious decision to care for their adult children at home as opposed to those that slide them into institutions and group homes.

Society does not provide enough supports. Actually, I believe the money is provided but it is fleeced by so many home and institution administrators that there is nothing for services and supports for the disabled. These stories of graft are exposed daily and reflect the actions of those who believe that the disabled have value only in that it lines their pockets.
Sometimes, when the disabled confront their lives, the "well has run dry." It is our fault but the only solution lies the ability of a society to do what is right. I do not believe we are there yet. I often believe that we aren't even heading in the right direction.
No answers from me. I simply make the choice to care for my totally disabled 25 year old son at home and always. Then again. my "well has not run dry."

william Peace said...

Sbcallahan, I just read your post. Really thought provoking. Anger has no place here. I must say smaller issues bother me about Symanski's death. First, what role the Reeve Foundation played. The unrelenting focus on cure has given some a skewed perception of disability. This would include Symanski who never tried to cope with her disability in many ways. She instead created a 5-10 year period of waiting for a cure. I find this impossible to relate to. Second, the Rutgers Care Cure Network provided her 100% support in her quest to die. I question the ethics of such a network. Bottom line for me--the cure industry is adversely affecting the lives of paralyzed people.
Phil, I too have no answers. Deeply held stereotypes are hard to eliminate. Did you read today in the NYT ongoing reports about the group home industry, Non profits that provide labor are reaping giant profits. Often they pay employees $8 an hour but receive over $60 from the state in reimbursement. The system is so corrupt it is beyond repair and people with disabilities suffer as a result.

ragachi said...

I didn't know Chrissy but I happened to have a few e-mail exchanges with her a few years ago about her art, and subsequently I followed her blog fairly regularly. I was of course aware of the physical and emotional pain that she was enduring, but was still shocked and surprised about her death, which I learned of only yesterday, when I googled her and happened to find your blog.

I will not judge her (judging society about its attitude toward the disabled is a different matter), since nobody except those close to her can know what she was going through and what the actual facts were. But her death is baffling in light of her last blog post before she died.

On September 13, she wrote of her excitement about having just completed a book about her experiences, and her hopes of having it published. She said that it would cost between $2000-$5000 to accomplish that, and wasn't certain that she could obtain the funds to do so, but I would think that if necessary she could have raised the money from friends and blog readers rather easily. She hoped to have the book out over the next few months and to put it online, and was eager to get reader feedback once the book was out. She saw the book as a way to improve the quality of her own life, and that of others. She promised to post another blog as soon as it was published.

And yet just over two weeks later (if the account of her death is to be believed), she began the process that led inexorably to her death. What happened between September 13 and October 1 to destroy her hope?

And one last thing - though it probably doesn't matter: her friend had reported that Chrissy had refused both food and hydration, but from everything that I had read, even a healthy person would not survive without water for more than about 10 days at room temperature and without exertion, and so if she lived for two months, it would seem that she must have received water. One wonders why she chose to stretch the process out like that if she was really determined to die. I have no answers to any of my questions, but I am very sad.

william Peace said...

rgachi, So much about Symanski's death makes no sense. My reading of her blog indicates the idea of suicide was ever present. The mechanics of how she accomplished this is not of interest. I am instead troubled by why she felt her life was filled with suffering. Her over whelming negative view on how she managed her bowels and bladder is so outside the norm it is hard to fathom. Baffling is an apt word to use. Her death was indeed baffling.

Matthew Smith said...

Her best friend wrote this account, which gives some details of how painful Chrissy's last couple of months were (it seems her pain medications were messed up and caused a mental breakdown): On the Loss of My Best Friend

william Peace said...

Mathew, Thanks for thinking of me. Symanski's friends and sisters have written about her last few months. I am at a loss as to how to respond. Anything I write appears like I am questioning their actions. I truly wish an investigative journalist would write about what took place.