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.