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.
Paralyzed since I was 18 years old, I have spent much of the last 30 years thinking about the reasons why the social life of crippled people is so different from those who ambulate on two feet. After reading about the so called Ashley Treatment I decided it was time to write a book about my life as a crippled man. My book, Bad Cripple: A Protest from an Invisible Man, will be published by Counter Punch. I hope my book will completed soon.
Friday, December 9, 2011
Wednesday, December 7, 2011
No Faith in My Fellow Human Beings
Last week I had a highly rewarding exchange of emails with a woman who is detailing her end of life experience at thedrsays.org. She is experiencing congestive heart failure and wants to die with dignity and in peace. We started our exchange as I left a cranky comment about her positive response to the Dr Oz I railed against on assisted suicide. Despite our different views we showed each other a great deal of respect that is all too often lacking when end of life issues are discussed. She is facing some very difficult decisions in the very near future. I wish her and her family well. I also urge you to read her work. It is important in large part because she is a living example that modern medical care and medical technology have created impossible ethical conundrums. I do not envy the decisions she and her family will be making. Thankfully it seems she has an excellent rapport with her physician and support of a loving family. As a veteran I am pleased to know she has received appropriate supports in terms of health insurance.
There is no proverbial but coming in this post. Rather an observation: many people who are nearing the end of their life know little or nothing about disability. Disability simply has never touched their lives or members of their family. Disability is an abstract concept and disability rights a foreign idea. But the woman I exchanged email with does have some experience. In her response to me she concluded by noting in "Dr. Oz, Montel Williams and the Bad Cripple" "my mother had polio as a child and is truly crippled by it. she has 3 daughters and growing up with her it never occurred to me that she would be better off if she took her own life. that is one reason I don’t worry about the slippery slope. we are smart enough to make the distinction between someone with a debilitating terminal illness and someone who is disabled. maybe i just have more faith in my fellow human beings."
In these few words a great divide is revealed. Those that favor the right to die with dignity are capable of seeing that those with a disability are not the same as those with a terminal condition. As this woman notes she has faith in her fellow human beings and based upon this faith is not afraid of the slippery slope. I love this sentiment. I do not share her faith or optimism in others. I do not trust the medical establishment. By medical establishment I refer to the medical industrial complex that dictates care in this country. I am even less inclined to trust my fellow man, the ordinary person, like the people on the Dr. Oz show that appeared to be happy to let anyone suffering to end their life with the full support of the medical establishment. In the case of the Dr. Oz Show anyone with a disability was clearly suffering, had little dignity, and deserved to die. The emotions of the show not the few facts put in evidence scared me. It scared me because as much as doctors would like to contend medical care is a hard science there is as much art as there is science in medical care. Culture I assure you rears its ugly head in every aspect of medical care and medical technology. By extension, culture is a significant variable in the way we die. We do not discuss end of life care--we never have and at this point given the very real ethical issues we now encounter at the end of life we as Americans desperately need to discuss the matter. We need a national debate. It is for this reason I found my exchange of emails so satisfying. Our respective views were questioned and subsequently more clearly articulated. We both learned much from a person we had a serious disagreement with.
In thinking about my email exchange and in particular the passage I quoted, I was reminded of one of my favorite books in disability studies, Make Them Go Away by Mary Johnson. In her book Johnson seeks to answer a seemingly simple question: Why is there so little support for disability rights? Well, most people do not equate equal rights with disability rights and few liberal rights organizations support the disability rights movement. The net result is many people do not think people with a disability are a minority group subject to discrimination. I find this line of thought baffling. Prejudice is rampant and it takes much more than 40 years of law making to change our deeply ingrained beliefs. When I bring up the issue of disability rights and closely tie it it other civil rights movements the most common reaction is disbelief. More than a few people have rolled their eyes and some simply say I am full of bull shit. In response I will acknowledge no one wakes up in the morning and thinks I will discriminate against a person with a disability today. But that does not mean prejudice does not exist. And this is why I do not trust my fellow human beings. The prejudice I encounter as a person with a disability is deeply ingrained. It is ever present in the form of a lack of social supports, inaccessible housing and mass transportation, employment, poverty and the list goes on and on. Think of one word--disenfranchised. When all these socially constructed barriers are eliminated I will have faith in my fellow humans. For now, I am not swayed nor do I feel equal. This jaundiced view is not nearly as nice as the sentiments my email friend expressed but reflect the gritty reality I have experienced as a person with a disability.
There is no proverbial but coming in this post. Rather an observation: many people who are nearing the end of their life know little or nothing about disability. Disability simply has never touched their lives or members of their family. Disability is an abstract concept and disability rights a foreign idea. But the woman I exchanged email with does have some experience. In her response to me she concluded by noting in "Dr. Oz, Montel Williams and the Bad Cripple" "my mother had polio as a child and is truly crippled by it. she has 3 daughters and growing up with her it never occurred to me that she would be better off if she took her own life. that is one reason I don’t worry about the slippery slope. we are smart enough to make the distinction between someone with a debilitating terminal illness and someone who is disabled. maybe i just have more faith in my fellow human beings."
In these few words a great divide is revealed. Those that favor the right to die with dignity are capable of seeing that those with a disability are not the same as those with a terminal condition. As this woman notes she has faith in her fellow human beings and based upon this faith is not afraid of the slippery slope. I love this sentiment. I do not share her faith or optimism in others. I do not trust the medical establishment. By medical establishment I refer to the medical industrial complex that dictates care in this country. I am even less inclined to trust my fellow man, the ordinary person, like the people on the Dr. Oz show that appeared to be happy to let anyone suffering to end their life with the full support of the medical establishment. In the case of the Dr. Oz Show anyone with a disability was clearly suffering, had little dignity, and deserved to die. The emotions of the show not the few facts put in evidence scared me. It scared me because as much as doctors would like to contend medical care is a hard science there is as much art as there is science in medical care. Culture I assure you rears its ugly head in every aspect of medical care and medical technology. By extension, culture is a significant variable in the way we die. We do not discuss end of life care--we never have and at this point given the very real ethical issues we now encounter at the end of life we as Americans desperately need to discuss the matter. We need a national debate. It is for this reason I found my exchange of emails so satisfying. Our respective views were questioned and subsequently more clearly articulated. We both learned much from a person we had a serious disagreement with.
In thinking about my email exchange and in particular the passage I quoted, I was reminded of one of my favorite books in disability studies, Make Them Go Away by Mary Johnson. In her book Johnson seeks to answer a seemingly simple question: Why is there so little support for disability rights? Well, most people do not equate equal rights with disability rights and few liberal rights organizations support the disability rights movement. The net result is many people do not think people with a disability are a minority group subject to discrimination. I find this line of thought baffling. Prejudice is rampant and it takes much more than 40 years of law making to change our deeply ingrained beliefs. When I bring up the issue of disability rights and closely tie it it other civil rights movements the most common reaction is disbelief. More than a few people have rolled their eyes and some simply say I am full of bull shit. In response I will acknowledge no one wakes up in the morning and thinks I will discriminate against a person with a disability today. But that does not mean prejudice does not exist. And this is why I do not trust my fellow human beings. The prejudice I encounter as a person with a disability is deeply ingrained. It is ever present in the form of a lack of social supports, inaccessible housing and mass transportation, employment, poverty and the list goes on and on. Think of one word--disenfranchised. When all these socially constructed barriers are eliminated I will have faith in my fellow humans. For now, I am not swayed nor do I feel equal. This jaundiced view is not nearly as nice as the sentiments my email friend expressed but reflect the gritty reality I have experienced as a person with a disability.