Last week I came across a blog entitled �Life; Paralyzed� written by Christina Symanski. The blog was devoted to her �thoughts & day to day struggles living with paralysis� and �current information related to spinal cord injury�. Symanski started her blog in September 2009 and her last entry was posted on September 13, 2011. Since I discovered her blog I have read each and every entry several times. I found much of what she wrote eloquent even though I considered her views on spinal cord injury morbidly depressing. I was hooked by her passion and the raw way she expressed her emotional and physical struggles. In fact, I stayed up most of the night reading her blog from beginning to end. In the morning I googled her name and found more of her writing, paintings, videos posted on various sites, and to my great shock I learned she died two days before I discovered her writing. I was dumbfounded by her death. I still am shocked. I mourn for a woman I never met. My heart goes out to her family.
Not once in the last week has Symanski been far from my mind. Every morning I google her name in the hope of finding an obituary. Every morning I am disappointed. No mention of her death has appeared. I do not know why Symanski�s works have touched me so deeply. Perhaps her words struck a chord because they are so radically different from mine. Perhaps it is because she wrote so well. Maybe it is more basic; I am appalled by her death and morbid views of paralysis. Even more disturbing to me, she did not die of natural causes. She wrote extensively and with sincerity about her desire to die, to end her suffering. She accomplished this goal and in the manner she wrote about. Based on threads at the Care Cure Community, she refused all food and hydration. According to a woman that identified herself as Christina� s best friend �Christina passed away yesterday, December 1st, exactly two months from when she started refusing food, water, and medical treatment. She spent most of those months at home, aside from a week in a hospice facility to get her palliative meds sorted out. Everything didn't play out quite as peacefully as she imagined it would, and she was conscious up until a few days ago, but her final moments were calm and comfortable and she passed on in her own home with her family at her side.�
It is one thing to express a desire to die, to essentially starve and dehydrate one�s self, and another to follow through. Symanski�s writings illustrate her interest in a cure for spinal cord injury, struggle coping with a high-level spinal cord injury that caused a host of medical complications, foremost among them autonomic dysreflexia, and her increasing despair. In 2009 her entries largely concerned a cure for paralysis. Symanski was injured in 2005, spent a long time in critical care hospitals and was for more than a year the resident of a nursing home. She escaped the nursing home, an almost impossible feat, lived in her own apartment and was remarkably productive. She was interviewed for newspaper articles and talked at length about her artwork. She posted three well produced but maudlin videos on line about life with a high-level spinal cord injury. A cursory reading of Symanski�s posts indicate that as 2010 progressed her entries became increasingly dark. Her autonomic dysreflexia continued unabated and the solutions suggested were unacceptable.
Three posts this year were particularly dark. Here I refer to �Meeting with Fr. Doug�, May 9, 2011; �How to Die in Oregon�, May 31; �Why I think I should be Allowed to Die with Dignity� May 31, 2011. All three posts indicate she was actively seeking a physician that would declare her terminally ill and I hence be eligible for hospice care. She consulted a lawyer to discuss the legal ramifications of her desire to die. She also contacted a local palliative care consultant to discuss all her options. Just as she was driven to search a cure for spinal cord injury she was equally driven to die. This is deeply disturbing to me at multiple levels foremost among them is that she convinced a doctor, lawyer, psychiatrist, palliative care specialist and her family to acquiesce to her wishes. This is well outside of the norm and I wonder about the ethics and legality of her actions. It also reveals an unspoken truth. When a person with a disability expresses a desire to die and engages in an all out effort to die they are applauded and encouraged by others�others without a disability. Symanski�s blog is littered with encouragement and supportive words. Her express desire to die in face of a debilitating condition reminded me of a lauded opinion piece I read in the New York Times this summer. �The Good Short Life� by Dudley Clendinen was an eloquent expression of his desire to die before ALS robbed him of his dignity. Society loves people like Symanski and Clendinen who are stately, dignified and eloquent. Their desire to die is perceived to be noble. Here is the problem. No one asks why, why do they want to die? Symanski feared being forced back into a nursing home. Clendinen questioned why he should spend $14,000 a year on a medication that will extend his life a few months.
In choosing to die people like Symanski and Clendinen reinforce an ugly truth about how people perceive disability--that is one is better off dead than disabled. Of course few people will openly admit this. Jackie Leach Scully identifies this as nonverbalized bias �disablism�. She wrote � People who are nonconsciously or unconsciously disablist do not recognize themselves as in any way discriminatory; their disablism is often unintentional, and persists through unexamined, lingering cultural stereotypes about disabled lives�. This made me wonder what would have happened to Symanski if she were not paralyzed and instead had a more socially acceptable chronic disease. Would she have been allowed to dehydrate and starve herself to death? Not a chance. It is only because she had a severe disability that her desire to die was understandable, acceptable to others.