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.