In the Body Silent Robert Murphy wrote about two types of anger. The first, existential anger, involves a pervasive bitterness at one's fate. Existential anger fuels self hate and is tied to shame and guilt. I do not know any people with a disability that feel this sort of existential anger that is directed inward and is inherently self destructive. In contrast, I know many people without a disability that think all people with a disability are angry because of their physical disability. More than once I have been accused of having a "chip on my shoulder" or that it "always has to be about me". What these statements assume is that the problems I have, and obvious anger, is of my own making. But this is simply not the case. My anger does not stem from my inability to walk but the skewed social interaction, stigma, and fear placed on top of an existing physical deficit. This is a point most people in my experience don't grasp and gets me to the second type of anger, situational anger. I have lots of situational anger. Situational anger is why I consider myself a bad cripple. Simply put, situational anger is a personal reaction to a perceived injustice and a violation of one's civil rights. I am not angry because I cannot walk up the steps. I am angry because the law mandated a ramp be constructed and that law has been ignored for a decade. I am angry at the situation and needless physical barrier. I am equally angry when my civil rights are violated as when I try to vote or attend a sporting event without being harassed by strangers who object to my presence. Situational anger is very common because people with a disability are not valued and access is not a priority in this country. If people with a disability were truly valued the unemployment rate would not be near 70% nor would 67% of polling places be inaccessible to me.
To me, situational anger is good. Situational anger rejects commonly held stereotypes and involves asserting one's civil rights. I am all for this. And this is the best thing the disability rights movement has going for it. Interesting to me is that the people I encounter most willing or likely to become angry are not disabled themselves. Instead, the people I see become angry are parents of children with a disability. I wish I could figure out a way to forge a relationship with these angry parents because they have the ability to change our educational system, one that is profoundly flawed. Actually they are changing the way we educate children with a disability and by extension the way we perceive disability. Problems abound as does prejudicial attitudes, especially given the economy and tight school budgets. But I am hopeful because people, parents of children with a disability are fighting back and rejecting dominant socio-cultural norms. I know this to be true as I read editorials from all over the country and parents are asking why their kids with a disability do not have the same rights as others. For instance, in the Kansas City Star, hardly a radical newspaper, Lisa Cannady wrote about her experiences. On November 8, she wrote "Our Most Vulnerable People Deserve a Full Chance in Life". I quote:
"There is something, collectively, in us that has allowed us to ignore the most vulnerable among us. From the waiting list that thousands of Kansans with disabilities have to negotiate, to comments earlier this year by President Obama about the Special Olympics, it is clear that disabled people remained largely disenfranchised. This is the last taboo, the group that it is still acceptable to marginalize.
The ugly truth is that when the needs and rights of people with disabilities are not upheld, when indignities — the big ones and the little ones — are allowed to go unchecked, it tells this vulnerable population that they don’t deserve better. It tells them substandard care and consideration are all that special needs people are worthy of.
As the mom of a special needs child, I am not prepared to accept that as my child’s due. I am not raising my son to sit at the back of the bus."
Cannady is doing exactly what Robert Murphy wanted people with and without a disability to do: reject existential anger. Cannady is not angry her child has a disability, such anger would be counterproductive. She is angry with the prejudicial attitudes, needless obstacles, waiting lists and lack of value placed on educating students with disabilities. We have the power to change this and situational anger is one way to attack the problem. The real trick is not so much the anger involved but in getting society to see past the stereotype of disability as tragedy. As of today society is unwilling to understand why people with a disability are angry but with more parents and bad cripples being produced every day the chances for change are increasing. So this morning I extend a hearty cheers to a mother in Kansas who I have never met but know she is on my side. What a great way to start the day.
Wednesday, November 11, 2009
Tuesday, November 10, 2009
Baby RB To Die: In My View the Inevitable Outcome
Baby RB will die. I fully expected this result but not the way it came about. According to British news outlets Baby RB's father withdrew his opposition to have life support removed. This took place one day after Andrew Bush, professor of pediatric respirology at Imperial College London testified that a mother's wishes should outweigh those of a father. Based on my understanding of the case via news sources, the pop psychology presented by Dr. Bush sealed Baby RB's fate. If this was not troubling enough, the words of the judge, Justice McFarlane, made it clear that Baby RB had no chance. And if you ask me Baby RB was never given an unbiased chance to survive. Once one gets past the superlatives heaped upon the parents involved, tears shed, clothes worn, and digs deeper the Judges words are sobering. In Justice McFarlane's estimation: "It is appropriate for me to say one or two words, not in judgement, but in endorsement of this sad but in my view inevitable outcome. It is I suspect impossible for those of us to whom such an event has not happened to do more than guess at the impact of it upon these two young parents. In one moment all of the hopes and dreams that they will have had for their expected baby will have been dashed and replaced with a life characterized by worry, stress, exhaustion, confusion and no doubt great sadness."
Clearly Justice McFarlane accepted the views of the "experts" that considered Baby RB's life a sad and pitiful existence. Is this assessment correct? I have no idea. But what I do know is that Justice McFarlane was unable or unwilling to accept that life with a severe disability does inevitably lead to a miserable life. It is as though Justice McFarlane took a page out of an old book, one which assumed a medical model of disability was gospel truth. In this book the doctor is always right (mothers too according to Dr. Bush) and life with a disability is bad--very bad. But why is life with a disability bad? This is the question that Justice McFarlane and many others conveniently ignore. The negative perception of disability is not based on science but rather on society's fear of life with a disability. Sure we build ramps, care for crippled kids and we do this out of the kindness of our heart. What society does not want acknowledge is the most basic need of people with or without a disability--the quest for our very humanity. Baby RB will be killed with kindness by two loving parents lauded by a judge. Baby RB had no chance--our cultural system never valued his existence. By extension, society does not value the presence of any person with a disability. I know this to be true because I have faced bigotry and ignorance for decades. The problems I encounter have nothing to do with my inability to walk but the societal bigotry placed on top of my physical deficit. This is the real issue, one that has not changed much since I was paralyzed 30 years ago or in the 19 years since the ADA was passed. My views are harsh but reinforced by ignorant comments, the utter lack of access, and simple refusal to negotiate difference. Thus in contrast to what others think when I see a person with a disability I see a hard assed survivor. Someone that has learned how to adapt and overcome a hostile social environment. A person that leaves their home with the knowledge they will encounter bigotry, be an unwanted presence yet asserts their most basic human rights. If there is anything sad about the case of Baby RB it that he was not given a chance. But then Baby RB has a lot of company--too many people with a disability are never given a chance or confront a system that prevents them from succeeding.
Clearly Justice McFarlane accepted the views of the "experts" that considered Baby RB's life a sad and pitiful existence. Is this assessment correct? I have no idea. But what I do know is that Justice McFarlane was unable or unwilling to accept that life with a severe disability does inevitably lead to a miserable life. It is as though Justice McFarlane took a page out of an old book, one which assumed a medical model of disability was gospel truth. In this book the doctor is always right (mothers too according to Dr. Bush) and life with a disability is bad--very bad. But why is life with a disability bad? This is the question that Justice McFarlane and many others conveniently ignore. The negative perception of disability is not based on science but rather on society's fear of life with a disability. Sure we build ramps, care for crippled kids and we do this out of the kindness of our heart. What society does not want acknowledge is the most basic need of people with or without a disability--the quest for our very humanity. Baby RB will be killed with kindness by two loving parents lauded by a judge. Baby RB had no chance--our cultural system never valued his existence. By extension, society does not value the presence of any person with a disability. I know this to be true because I have faced bigotry and ignorance for decades. The problems I encounter have nothing to do with my inability to walk but the societal bigotry placed on top of my physical deficit. This is the real issue, one that has not changed much since I was paralyzed 30 years ago or in the 19 years since the ADA was passed. My views are harsh but reinforced by ignorant comments, the utter lack of access, and simple refusal to negotiate difference. Thus in contrast to what others think when I see a person with a disability I see a hard assed survivor. Someone that has learned how to adapt and overcome a hostile social environment. A person that leaves their home with the knowledge they will encounter bigotry, be an unwanted presence yet asserts their most basic human rights. If there is anything sad about the case of Baby RB it that he was not given a chance. But then Baby RB has a lot of company--too many people with a disability are never given a chance or confront a system that prevents them from succeeding.
Friday, November 6, 2009
Baby RB: A Miserable, Sad and Pitiful Existence?
A legal battle is taking place in Britain regarding Baby RB. Doctors caring for a child known only as Baby RB is at the center of a life and death court case. This battle pits two parents against one another. The mother, supported by Baby RB's doctors want to withdraw life support from the one year old child. The father who is separated from his wife is fighting the mother and doctors efforts. The Family Division of the High Court in Britain and Justice McFarlane will decide if Baby RB lives or dies. As one would expect the press has sensationalized the story. Newspaper articles refer to the age of the parents, how they split up amicably, the number of hours they visit their child daily, and what the mother has worn in court. Nuanced debate is utterly absent. The important issue that is lost in the hysteria and headlines is basic: for the very first time a court will decide whether a child lives or dies, a child whose brain function is normal. You read that last sentence correctly: Baby RB's brain function is not impaired. This is subject to some debate because in the words of one doctor "it would take many months or years to develop a two way communication system". Thus it is entirely possible Baby RB can think as clearly as me and the people reading these words. Think long and hard about the implications of this.
Baby RB has a rare condition known as Congenital Myasthenic Syndrome (CMS). I cannot comment on what life with CMS is like. What I can comment on is the overwhelmingly negative assessment of what life is like for a person with a severe disability that have been made in court. What the mother and the doctors that support her decision want to do is kill; kill with love and kindness by removing life support. This is as perverse as it is wrong. It is an emotional argument, one designed to make us cry rather than think. And, as humans we must think long and hard about what is being said in court. For instance, the mother's legal representative has stated "She has seen the pain he experiences just to survive. In her mind the intolerable suffering experienced by her son must outweigh her own personal grief should she lose her child". Michael Mylonas, acting for the hospital trust, stated Baby RB was the "most severely injured child" and evidence compelled the hospital to seek "a peaceful calm and dignified death with palliative care to prevent suffering". Doctors that have appeared in court who support the mother state Baby RB is living "on a knife's edge". This a great sound bite that garnered many headlines. A more sober assessment was buried in a newspaper article that gets to the crux of the issue: "It troubles me that I am committing him on a daily basis to ongoing ventilation in an intensive care unit where I think his daily existence is distressing and that he does not have the basic building blocks which I see as necessary to live in the outside world". How does this doctor know whether Baby RB is distressed? Baby RB knows no other reality and his parents report they can recognize when he is unhappy or in distress. They can also tell when he is experiencing pleasure or, conversely, stress. This leads me to wonder who is in fact distressed, Baby RB or the doctors charged with his care who are making a subjective assessment about his quality of life. What I find amazing is that Baby RB's cognition is being used to justify ending his life. One news report stated "tragically his brain is not affected, so he can hear, feel and see but is locked in a helpless body". These comments echo what the mother's lawyer stated in court: "Witnesses for the trust will say that the fact is that cognition will simply make his own plight all the more unbearable to him. As he gets older he will see glimpses of what others are able to do". Please spare me the melancholy.
When I read the words above I could not help but worry. I know that on a regular basis I pass people that think my existence is not that much different from Baby RB--miserable, sad and pitiful. Scholars, doctors, and strangers alike seem incapable or unwilling to accept the fact that life with a disability regardless of its severity need not involve pain and suffering. I do not suffer nor am I in pain. Any pain I experience is not the result of a bodily deficit but caused by the stigma that tenaciously clings to cultural ideas associated with disability. I am well aware of what others can do--I catch more than mere glimpses of this daily. Frankly, I don't care nor do I even think about what others can do. Walking, jogging, running is not relevant to my life. I fail to understand why we as a culture place such great value on such mundane abilities. Sure the human body was intended to be upright, locomotion bipedal, and for our lungs to operate independently and without mechanical intervention. But this is not always possible and we humans are an amazingly adaptable species. When it is cold we put on warm clothes, when it is hot we seek the shade. We live in all sorts of different environments and we adapt to our surroundings without question or thought. That is we adapt without thought or question until disability enters into the equation. We do not equate adaptation, the bedrock of modern biology and evolutionary theory, with disability. Instead, we perceive disability as inherently bad--something that must be overcome or in Baby RB's case a disability so severe death is preferable. I completely and utterly reject this line of reasoning. I value my existence even though society would prefer my silence, isolation or death.
After reading and thinking about Baby RB this week I feel as though I am at war in my own country and well beyond its borders. Baby RB's mother wants her own child dead and as such is quite like Daniel James' parents that took their son to a suicide clinic and helped him end his own life after a spinal cord injury. These good people only saw pain and suffering--a thought that sends chills down my paralyzed spinal cord. I feel chills because I have no doubt many would like to end my suffering and pitiable existence. Few are willing to voice such an opinion as this would be in bad taste. No one will baldly state life with a disability is not worth living. But the lack of statement to this end does not stop the thought process or its implications. Instead we get people like Peter Singer who writes about lofty goals such as the amelioration of poverty throughout the world. One way to reach this goal is to seek to help the greatest number of people. Singer's goals are great and given unwarranted respect given his position at Princeton University but dig a little deeper and next thing you know babies like Baby RB will die. What will follow this? Should all babies determined to be severely disabled die. Should elderly people experiencing dementia die. Should people with cancer die. Should people with spinal cord injuries die. If so, who gets to make these decisions? And more to the point what does this say about humanity? I can tell you where this line of reasoning will go. The weakest least respected members of society will suffer and needlessly die. I might die. You might die. I am not being reactionary. I know this because I am perceived to be weak, lack social respect, and many think I am suffering and in search of a cure. I am a member of an underclass that has a long and depressing history filled with tragedies such as forced institutionalization and almost universal social invisibility.
I think we people with a disability are on the cusp of major social breakthrough in spite of stories like Baby RB. I suspect, hope, enough people such as myself and others are now in communities across the land that we are reaching a critical mass. We are not silent, we are not meek, and if I am any indication we are angry. We have rights and are willing to assert them. And now is a good time to let our voice be heard. We must protect not only our rights as people with a disability but we must band together with those like Baby RB that have no voice. We must protect Baby RB, fight for his right to live. We must fight for the rights of another child known only as Ashley X who has the right to grow into an adult body, a right that was violated and laws broken in the process. We must fight together and for one another regardless of our respective disability or cognitive functioning. We are all in this together, those with and without a disability. We are fighting for nothing more and nothing less than our very existence. Baby RB reinforced this belief, one I hope many share.
Baby RB has a rare condition known as Congenital Myasthenic Syndrome (CMS). I cannot comment on what life with CMS is like. What I can comment on is the overwhelmingly negative assessment of what life is like for a person with a severe disability that have been made in court. What the mother and the doctors that support her decision want to do is kill; kill with love and kindness by removing life support. This is as perverse as it is wrong. It is an emotional argument, one designed to make us cry rather than think. And, as humans we must think long and hard about what is being said in court. For instance, the mother's legal representative has stated "She has seen the pain he experiences just to survive. In her mind the intolerable suffering experienced by her son must outweigh her own personal grief should she lose her child". Michael Mylonas, acting for the hospital trust, stated Baby RB was the "most severely injured child" and evidence compelled the hospital to seek "a peaceful calm and dignified death with palliative care to prevent suffering". Doctors that have appeared in court who support the mother state Baby RB is living "on a knife's edge". This a great sound bite that garnered many headlines. A more sober assessment was buried in a newspaper article that gets to the crux of the issue: "It troubles me that I am committing him on a daily basis to ongoing ventilation in an intensive care unit where I think his daily existence is distressing and that he does not have the basic building blocks which I see as necessary to live in the outside world". How does this doctor know whether Baby RB is distressed? Baby RB knows no other reality and his parents report they can recognize when he is unhappy or in distress. They can also tell when he is experiencing pleasure or, conversely, stress. This leads me to wonder who is in fact distressed, Baby RB or the doctors charged with his care who are making a subjective assessment about his quality of life. What I find amazing is that Baby RB's cognition is being used to justify ending his life. One news report stated "tragically his brain is not affected, so he can hear, feel and see but is locked in a helpless body". These comments echo what the mother's lawyer stated in court: "Witnesses for the trust will say that the fact is that cognition will simply make his own plight all the more unbearable to him. As he gets older he will see glimpses of what others are able to do". Please spare me the melancholy.
When I read the words above I could not help but worry. I know that on a regular basis I pass people that think my existence is not that much different from Baby RB--miserable, sad and pitiful. Scholars, doctors, and strangers alike seem incapable or unwilling to accept the fact that life with a disability regardless of its severity need not involve pain and suffering. I do not suffer nor am I in pain. Any pain I experience is not the result of a bodily deficit but caused by the stigma that tenaciously clings to cultural ideas associated with disability. I am well aware of what others can do--I catch more than mere glimpses of this daily. Frankly, I don't care nor do I even think about what others can do. Walking, jogging, running is not relevant to my life. I fail to understand why we as a culture place such great value on such mundane abilities. Sure the human body was intended to be upright, locomotion bipedal, and for our lungs to operate independently and without mechanical intervention. But this is not always possible and we humans are an amazingly adaptable species. When it is cold we put on warm clothes, when it is hot we seek the shade. We live in all sorts of different environments and we adapt to our surroundings without question or thought. That is we adapt without thought or question until disability enters into the equation. We do not equate adaptation, the bedrock of modern biology and evolutionary theory, with disability. Instead, we perceive disability as inherently bad--something that must be overcome or in Baby RB's case a disability so severe death is preferable. I completely and utterly reject this line of reasoning. I value my existence even though society would prefer my silence, isolation or death.
After reading and thinking about Baby RB this week I feel as though I am at war in my own country and well beyond its borders. Baby RB's mother wants her own child dead and as such is quite like Daniel James' parents that took their son to a suicide clinic and helped him end his own life after a spinal cord injury. These good people only saw pain and suffering--a thought that sends chills down my paralyzed spinal cord. I feel chills because I have no doubt many would like to end my suffering and pitiable existence. Few are willing to voice such an opinion as this would be in bad taste. No one will baldly state life with a disability is not worth living. But the lack of statement to this end does not stop the thought process or its implications. Instead we get people like Peter Singer who writes about lofty goals such as the amelioration of poverty throughout the world. One way to reach this goal is to seek to help the greatest number of people. Singer's goals are great and given unwarranted respect given his position at Princeton University but dig a little deeper and next thing you know babies like Baby RB will die. What will follow this? Should all babies determined to be severely disabled die. Should elderly people experiencing dementia die. Should people with cancer die. Should people with spinal cord injuries die. If so, who gets to make these decisions? And more to the point what does this say about humanity? I can tell you where this line of reasoning will go. The weakest least respected members of society will suffer and needlessly die. I might die. You might die. I am not being reactionary. I know this because I am perceived to be weak, lack social respect, and many think I am suffering and in search of a cure. I am a member of an underclass that has a long and depressing history filled with tragedies such as forced institutionalization and almost universal social invisibility.
I think we people with a disability are on the cusp of major social breakthrough in spite of stories like Baby RB. I suspect, hope, enough people such as myself and others are now in communities across the land that we are reaching a critical mass. We are not silent, we are not meek, and if I am any indication we are angry. We have rights and are willing to assert them. And now is a good time to let our voice be heard. We must protect not only our rights as people with a disability but we must band together with those like Baby RB that have no voice. We must protect Baby RB, fight for his right to live. We must fight for the rights of another child known only as Ashley X who has the right to grow into an adult body, a right that was violated and laws broken in the process. We must fight together and for one another regardless of our respective disability or cognitive functioning. We are all in this together, those with and without a disability. We are fighting for nothing more and nothing less than our very existence. Baby RB reinforced this belief, one I hope many share.
Tuesday, November 3, 2009
Hostile Social Environments
With election day almost here I have been thinking of hostile social environments. I know when I vote I will most likely have a negative social encounter with either a poll worker or fellow voter. It happens all the time. This made me think of the other places I try to avoid because I know I will have a bad experience. By bad I mean I will be treated with disrespect or encounter a needless architectural or attitudinal barrier. Major professional sporting events are often problematic. Architectural barriers in the form of grossly inadequate handicap seating areas are a major variable as are ignorant drunks that seem magnetically drawn to my wheelchair. Secondary schools in my area, particularly my son's public school, seem hostile to the presence of a parent with a disability. But these place pale in comparison to the following places:
1. All Catholic churches: I grew up Catholic and went to Catholic secondary school. I have the emotional scars that often come with such an upbringing. Yet in spite of it all I still consider myself to be Catholic and when troubled read the Bible. In short, I am a believer. But I cannot believe nor could I ever pray or worship at Church. My problem is that I expect to be treated like everyone else. This does not happen in the Catholic Churches I have visited. Many churches have architectural barriers that are easily overcome and I often notice Churches have ramps. What no Churches have is a welcoming social environment. Each every time I go to Church I have a bad experience. It is the norm for someone to come up to me and state "If you prayed harder you would walk again" or "If you accept Christ as your savior you will rise up and walk". Usually this comment is uttered by an elderly person. This sort of old fashioned ignorance is somewhat forgivable though certainly demeaning. But this is not the lone reason why I dislike going to Church. It is the truly strange reaction I get from religious zealots who seem to think one of two things: 1. I am the anti-Christ. 2. I was struck down by God to punish me for sins I committed in my lifetime. This sort of reaction I cannot live with. Frankly, part of me is worried about my personal safety when I encounter these people. The fact the Church and so called leaders such as priests and nuns are present when these comments are made and do nothing is unforgivable. Their silence in the face of such blasphemy is an afront to my humanity.
2. Health Food Stores: I never ever go into health food stores. Thanks to the internet, I have not been to a health food store in a long time. When shopping in such a place I encounter people who are intensely curious about my disability. They want to know why I use a wheelchair and how long I have used one. I do my best to avoid this line of questioning because I know what is coming next. Comments such as this are the norm: "If you took the following vitamin regime I am sure you could walk again" or "Have you ever tried the following non traditional medical routine". There is the unquestioned belief I have needlessly accepted my fate, paralysis, and that they have the knowledge to cure me. How does one respond to such an ill founded conclusion? If feeling nasty I have told those especially aggressive in their quest to cure me that all my medical problems started from an unusual vitamin regime. I do not recommend this course of action--when I have done this I have worried about getting punched in the nose.
3. Health Clubs/Athletic Gyms: Paralyzed or not, I have always disliked gyms. If I want to physically exert myself I go kayaking, hiking, or skiing. I do not enjoy lifting weights or working out on any machine. I find such activities inherently boring. But what bothers me about gyms is the stares. A gym is a place where one is very body aware, it is the nature of the beast. My body does not fit in. And when confronted with a body such as mine people stare-and they stare a lot. Mirrors abound and as do the stares. What these stares mean I am not so sure. Pity from some, curiosity, revulsion, supercripdom, whatever. It is not a positive experience. Ironically gyms from what I have observed often go out of their way to be physically accessible. I know one local gym that even offers a membership discount to people with a disability. But the barriers present are not architectural but social. Simply put, I do not like being stared at and hence avoid gyms.
4. Hospitals: I hate hospitals but when I walk into one I feel at home, as though an inner calm envelopes me. That antiseptic smell is comforting and akin I suppose to the smell of an apple pie baking in a kitchen. The problem is that people like me with a complex medical past draw the interest of curious doctors. Good doctors are always curious and they love to ask detailed questions about my medical history. The fact they miss is that my medical history and paralysis is more often than not irrelevant. This does not stop them from asking many questions which need not be asked. The real issue though is when I am in a hospital one and all think I am a patient. This leap in logic leads to many to make false assumptions and many hospital workers treat me as though I have no role in society. Thus in the past when I have brought my son to the emergency room staff members are stunned I am a father responsible for the care of my child. I know this because they ask "Are you the biological father?" or "Where is the child's guardian?" This of course ignores the obvious--like my son needs stitches and his finger is covered in a bloody bandage. On the rare occasion I have been a patient, the fact my needs are different are always a problem. The overwhelming concern is will my care be more work for the staff. Once it is clear this is not an issue, the problem becomes hospitals are not prepared to deal with a paralyzed body. For example, upon admission one needs to be weighed. The scale to weigh someone in their wheelchair never ever works. Examination tables are never accessible nor are most procedure rooms. In short, architectural and attitudinal barriers abound leading me to conclude hospitals are dangerous places. You see I am not fully human in the eyes of many staff workers and fear, truly and sincerely fear, my life will somehow be snuffed out because someone decides I have suffered enough.
I am very curious if readers can add to this list. I have not mentioned airline terminals and the experience of getting on and off an airplane. The point here is that mass transportation as anyone that uses a wheelchair knows is often a problem. I am sure I have missed some places that generate negative experiences. So please comment. I want to know where else I should avoid!
1. All Catholic churches: I grew up Catholic and went to Catholic secondary school. I have the emotional scars that often come with such an upbringing. Yet in spite of it all I still consider myself to be Catholic and when troubled read the Bible. In short, I am a believer. But I cannot believe nor could I ever pray or worship at Church. My problem is that I expect to be treated like everyone else. This does not happen in the Catholic Churches I have visited. Many churches have architectural barriers that are easily overcome and I often notice Churches have ramps. What no Churches have is a welcoming social environment. Each every time I go to Church I have a bad experience. It is the norm for someone to come up to me and state "If you prayed harder you would walk again" or "If you accept Christ as your savior you will rise up and walk". Usually this comment is uttered by an elderly person. This sort of old fashioned ignorance is somewhat forgivable though certainly demeaning. But this is not the lone reason why I dislike going to Church. It is the truly strange reaction I get from religious zealots who seem to think one of two things: 1. I am the anti-Christ. 2. I was struck down by God to punish me for sins I committed in my lifetime. This sort of reaction I cannot live with. Frankly, part of me is worried about my personal safety when I encounter these people. The fact the Church and so called leaders such as priests and nuns are present when these comments are made and do nothing is unforgivable. Their silence in the face of such blasphemy is an afront to my humanity.
2. Health Food Stores: I never ever go into health food stores. Thanks to the internet, I have not been to a health food store in a long time. When shopping in such a place I encounter people who are intensely curious about my disability. They want to know why I use a wheelchair and how long I have used one. I do my best to avoid this line of questioning because I know what is coming next. Comments such as this are the norm: "If you took the following vitamin regime I am sure you could walk again" or "Have you ever tried the following non traditional medical routine". There is the unquestioned belief I have needlessly accepted my fate, paralysis, and that they have the knowledge to cure me. How does one respond to such an ill founded conclusion? If feeling nasty I have told those especially aggressive in their quest to cure me that all my medical problems started from an unusual vitamin regime. I do not recommend this course of action--when I have done this I have worried about getting punched in the nose.
3. Health Clubs/Athletic Gyms: Paralyzed or not, I have always disliked gyms. If I want to physically exert myself I go kayaking, hiking, or skiing. I do not enjoy lifting weights or working out on any machine. I find such activities inherently boring. But what bothers me about gyms is the stares. A gym is a place where one is very body aware, it is the nature of the beast. My body does not fit in. And when confronted with a body such as mine people stare-and they stare a lot. Mirrors abound and as do the stares. What these stares mean I am not so sure. Pity from some, curiosity, revulsion, supercripdom, whatever. It is not a positive experience. Ironically gyms from what I have observed often go out of their way to be physically accessible. I know one local gym that even offers a membership discount to people with a disability. But the barriers present are not architectural but social. Simply put, I do not like being stared at and hence avoid gyms.
4. Hospitals: I hate hospitals but when I walk into one I feel at home, as though an inner calm envelopes me. That antiseptic smell is comforting and akin I suppose to the smell of an apple pie baking in a kitchen. The problem is that people like me with a complex medical past draw the interest of curious doctors. Good doctors are always curious and they love to ask detailed questions about my medical history. The fact they miss is that my medical history and paralysis is more often than not irrelevant. This does not stop them from asking many questions which need not be asked. The real issue though is when I am in a hospital one and all think I am a patient. This leap in logic leads to many to make false assumptions and many hospital workers treat me as though I have no role in society. Thus in the past when I have brought my son to the emergency room staff members are stunned I am a father responsible for the care of my child. I know this because they ask "Are you the biological father?" or "Where is the child's guardian?" This of course ignores the obvious--like my son needs stitches and his finger is covered in a bloody bandage. On the rare occasion I have been a patient, the fact my needs are different are always a problem. The overwhelming concern is will my care be more work for the staff. Once it is clear this is not an issue, the problem becomes hospitals are not prepared to deal with a paralyzed body. For example, upon admission one needs to be weighed. The scale to weigh someone in their wheelchair never ever works. Examination tables are never accessible nor are most procedure rooms. In short, architectural and attitudinal barriers abound leading me to conclude hospitals are dangerous places. You see I am not fully human in the eyes of many staff workers and fear, truly and sincerely fear, my life will somehow be snuffed out because someone decides I have suffered enough.
I am very curious if readers can add to this list. I have not mentioned airline terminals and the experience of getting on and off an airplane. The point here is that mass transportation as anyone that uses a wheelchair knows is often a problem. I am sure I have missed some places that generate negative experiences. So please comment. I want to know where else I should avoid!
Thursday, October 29, 2009
Democracy for All but the Crippled
I have the legal right to vote as does every other American. I do not vote in my town. Why? The polling place is not accessible. It never has been and I doubt it ever will be. Thus I vote a few towns away. This is no big deal for me. I own a car and am willing to drive a few extra miles. What's the harm? This is the harm: I am the only resident that cannot vote in my own town. This bothers me. It does not bother anyone else. I know this for a fact because people have told me this. The level of ignorance at voting time is stunning. In 30 years I have never seen an accessible voting booth--not once. Sure I see little blue wheelchair signs but they all point to booths that are 40 years old and are not modified in any way. Worse, I have been questioned by poll workers and voters as to whether "someone in my condition" has the right to vote. More than once, fellow voters have suggested I should not be allowed to vote as there must be some sort of "cognitive minimum requirement". I have had poll workers volunteer to pull the handle in the booth, a direct violation of the law. I have had poll workers offer to enter the booth with me. Another violation of the law. Suffice it to say, when I vote ignorance and architectural barriers are the norm. And this is in the wealthy suburbs. What I wonder happens in poor and rural areas where access surely is a greater challenge? The answer to this question appeared in a recent report published by the U.S. Government Accountability Office (GAO). It is obvious the barriers I encounter are the norm nationwide. 27% of polling places in the 20008 election were accessible. Let me put that in headline form:
27% OF POLLING PLACES ACCESSIBLE IN 2008
This is a national disgrace. Did this report resonate with let's say the New York Times, Wall Street Journal or other major publications? No! Did the national television news media report about this? No! Did CNN use this story as a filler? No! Did news pundits on the radio mention it? No!
Are we living in 1954 or is the year 2009? Was the ADA not passed 19 years ago? No wonder I feel about as welcome voting as a black man did during the Jim Crow era. Imagine if you will we are not discussing wheelchair access but racial segregation.
Imagine if I were black and not disabled. Imagine a sign that stated "whites only" outside your local polling place. I bet a riot would ensue. Police would be called and the national and local media would be out in force. But we are not talking about racial segregation. We are talking about the purposeful segregation of some 54 million Americans with a disability of some sort and about one or two million people that use wheelchairs. These people, people like me, have the right to vote. More than this inalienable right I would hope we have the support of the vast majority of our fellow Americans. But this is not the case. Access and inclusion is not valued, well, it is valued as long as it does not cost anything. I know this because someone like Governor Paterson, a man with a disability, thinks access is important but only if it is not too costly. I wrote about this last September. The GAO report only emphasizes this fact. But don't trust me. Read the GAO report for yourself. You can find a really detailed 47 page report that every American should be ashamed of.
Voting, we are taught, is fundamental to our democratic system. Federal law requires polling places to be accessible to all voters with a disability. The federal government knew the lack of access was rampant and in 2002 Congress enacted the Help American Vote Act of 2002. This act required polling places to have at least one voting system accessible to people with disabilities. This law is great but will only take us as far as it is enforced and socially accepted. Based on my experience as a voter for the last 20 years there is no desire to enforce the law. What the law states and reality are diametrically opposed to one another. I only need to look to and thank Governor Paterson because he made it clear there is no social demand for access. Such access is too expensive. This makes me furious. I am ashamed of my fellow Americans. I am ashamed of my town. I am ashamed of public schools that teach one thing and do another. I feel very alone today and I know why. I do not share and have not ever shared the rights of those that are bipedal. Surely the most resistant to this sort of thinking cannot dispute the facts--only 27% of polling places are accessible. Millions of people's rights are being violated and the vast majority of Americans don't care.
27% OF POLLING PLACES ACCESSIBLE IN 2008
This is a national disgrace. Did this report resonate with let's say the New York Times, Wall Street Journal or other major publications? No! Did the national television news media report about this? No! Did CNN use this story as a filler? No! Did news pundits on the radio mention it? No!
Are we living in 1954 or is the year 2009? Was the ADA not passed 19 years ago? No wonder I feel about as welcome voting as a black man did during the Jim Crow era. Imagine if you will we are not discussing wheelchair access but racial segregation.
Imagine if I were black and not disabled. Imagine a sign that stated "whites only" outside your local polling place. I bet a riot would ensue. Police would be called and the national and local media would be out in force. But we are not talking about racial segregation. We are talking about the purposeful segregation of some 54 million Americans with a disability of some sort and about one or two million people that use wheelchairs. These people, people like me, have the right to vote. More than this inalienable right I would hope we have the support of the vast majority of our fellow Americans. But this is not the case. Access and inclusion is not valued, well, it is valued as long as it does not cost anything. I know this because someone like Governor Paterson, a man with a disability, thinks access is important but only if it is not too costly. I wrote about this last September. The GAO report only emphasizes this fact. But don't trust me. Read the GAO report for yourself. You can find a really detailed 47 page report that every American should be ashamed of.
Voting, we are taught, is fundamental to our democratic system. Federal law requires polling places to be accessible to all voters with a disability. The federal government knew the lack of access was rampant and in 2002 Congress enacted the Help American Vote Act of 2002. This act required polling places to have at least one voting system accessible to people with disabilities. This law is great but will only take us as far as it is enforced and socially accepted. Based on my experience as a voter for the last 20 years there is no desire to enforce the law. What the law states and reality are diametrically opposed to one another. I only need to look to and thank Governor Paterson because he made it clear there is no social demand for access. Such access is too expensive. This makes me furious. I am ashamed of my fellow Americans. I am ashamed of my town. I am ashamed of public schools that teach one thing and do another. I feel very alone today and I know why. I do not share and have not ever shared the rights of those that are bipedal. Surely the most resistant to this sort of thinking cannot dispute the facts--only 27% of polling places are accessible. Millions of people's rights are being violated and the vast majority of Americans don't care.
Tuesday, October 27, 2009
Ten Years of Peter Singer
Thanks go to the Daily Princetonian and No Dead Yet for reminding me that Peter Singer, the self proclaimed "most important philosopher of our time" has been at Princeton University for ten years. Singer is one of the very few scholars that leaves me speechless, unable to express myself because I find his writing distasteful and grossly misleading. I do not respect Singer as a scholar though I understand his importance as it relates to issues such as animal rights. But outside of animal rights Singer has extreme views with regard to infanticide, abortion, assisted suicide, and the treatment of people with a disability. In the past I have refrained from engaging Singer as others have; here I refer to Harriet McBryde Johnson and her well-read New York Times article "Unspeakable Conversations" circa 2003. I simply do not want to dignify his work with a cogent reply that would give his views the credibility they do not deserve. Afterall, if it were up to Singer I along with many other people with a disability would be dead.
As expected from a school newspaper, the article in the Daily Princetonian, "Peter Singer Reflects on a Decade at Princeton" by Jason Jung is laudatory. I can accept this. Princeton has spent the last decade promoting Singer and I can hardly expect the university to question its hiring practices after the fact. Regradless, Stephen Drake, research analyst at Not Dead Yet has good reason to be outraged. The Daily Princetonian original article contained a terrible error that was quickly, though inadequately, corrected . Although corrected by an editorial note, this does not change the fact the original article stated Not Dead Yet protests were "violent" and further implied they were responsible for death threats that were levied when Singer was hired. I strongly suggest you read Drake's entry about Singer and the mischaracterization of Not Dead Yet at their blog. I need not repeat what Drake wrote for his words are powerful on their own. What I want to know is to what degree was Singer involved in this misdirection? Did Singer characterize Not Dead Yet Protests to the author as violent? Does he think Not Dead Yet was responsible for the deathe threats he received when he was hired in 1999? Perhaps the author simply made a mistake. I doubt these questions will ever be answered and they highlight a penchant Singer has--when he is criticized he falls back on the same response. Poor Singer is quickly and harshly judged because his views are taken out of context. Critics rely on short summaries of his work and do not understand or take the time to read the corpus of his writings on a particular subject. This approach has been wildly successful and derailed many harsh analyses. This is why I consider him to be an ill tempered polemicist rather than a scholar willing to exchange opposing ideas. Singer effectively diverts attention from the real issues at hand. For instance, when he was hired by Princeton the controversy surrounding his appointment overshadowed the fact he was to be the Ira W. DeCamp Professor of Bioethics in the University Center for Human Values. Singer was not a bioethicist in 1996. He is not a bioethicist in 2009. Singer's area of specialization is ethics, particularly applied ethics. His work is certainly is within the realm of bioethics as are most of his controversial and extreme views. This is not the place or time to delve into this aspect of his career. Instead, I will focus on the article in the Daily Princetonian and how it conflicts with other statements made by Singer. I am doing this so I am not accused of taking his words out of context.
In the Daily Princetonian Singer noted that when he "joined Princeton's faculty in the fall of 1999, he expected good students and good seminars, but he never anticipated the backlash: a large-scale protest against his appointment that included the arrest of 14 activists outside Nassau Hall on Sept. 21, 1999". Let me contrast this statement with the following from the text Peter Singer Under Fire published earlier this year. "I had an inkling my appointment at Princeton was not going to pass unnoticed when someone forwarded me a message that Margaret Tighe, a leader of the Australian anti-abortion movement, had sent to anti-abortion groups in the U.S. Tighe told her U.S. friends about my views, and suggested that they might like to give me a warm welcome. They did". Given the fact Singer had drawn protests in the past, particularly in Germany, he must have been aware that the "warm welcome" referred to was surely meant to be hostile if not vitriolic. And here I am not referring to Not Dead Yet but rather pro-life groups who Singer wrote believed were most likely responsible for the death threats he received. Singer noted that after Not Dead Yet protests made headlines in the New York Times he was inundated with media requests. In recalling this episode he wrote "The worst aspect of the publicity was that both Shapiro and I received death threats. Since American pro-life activists have murdered doctors who carried out abortions, the threats had to be taken seriously". There can be no question here: Singer believes pro-life groups were responsible for the death threats and Not Dead Yet responsible for headlines. He further argues that the Not Dead Yet protests had no support on campus. That may or may not be true but he drew the wrath of many others among them Steve Forbes, alumni of Princeton and trustee who withdrew all financial support as a result of Singer's appointment. The New York Times considered Singer's appointment controversial and compared it to Bertrand Russell's appointment to the City College of New York in 1940.
Surely any person with an ounce of common sense would conclude protests from a host of groups Singer had alienated would mount a significant protest. Simply put, Not Dead Yet did the best job of protesting. Singer recalled in Peter Singer Fires Back that "On my first day of classes, hundreds of protesters, some of whom came from as far away as Chicago descended on Nassau Hall, the center of the university's administration. Several members of Not Dead Yet chained their wheelchairs to the doors of the building, blocking the entrances for two hours before they were removed by police. (My own class was undisturbed, thanks to a security cordon around the building in which it was held.) The protest made good television and was widely covered." This is called civil disobedience, a particularly effective means of protesting. But in this case the protests backfired. The New York Times asked SInger to write an article and restated his well entrenched views in magazine section entitled "The Singer Solution to World Poverty". This caught the attention of the editors at Harper Collins who published Singer's Writings on an Ethical Life. This text cemented his reputation on American soil and he has been working at Princeton ever since.
I find Singer as frustrating as Christopher Reeve was in terms of disability rights. Singer is a gifted writer, well schooled at crafting convincing arguments that are often wrong in my opinion. Likewise, Reeve quest for cure, a laudable goal, obscured if not damaged the fight for disability rights. Thus I find statements by Harold Shapiro, university president when Singer was hired frustrating in the extreme. For example, in the Daily Princetonian Shapiro stated "A university is a place that is at all times questioning the values we have, not just committing to the views we have. One of the roles of a university is to question existing arrangements and maybe suggest better ways of going about things, thinking about things." Well said. And how about starting with questioning the equality of people with a disability, the same people Singer is willing to kill at birth. How about questioning why 19 years after the ADA was passed universities and colleges across the country remain hostile to the inclusion of students with disabilities. How about questioning why more disability studies programs do not exist at top flight schools like Princeton. How about including disability related texts into the curriculum. How about making Princeton the most accessible and open campus to students and faculty members with a disability. These are questions Princeton and other universities should be questioning. Instead we have a polemicist such as Singer pontificating about ten years at a university that should not have hired him in the first place. No wonder academic life frustrates me to no end.
As expected from a school newspaper, the article in the Daily Princetonian, "Peter Singer Reflects on a Decade at Princeton" by Jason Jung is laudatory. I can accept this. Princeton has spent the last decade promoting Singer and I can hardly expect the university to question its hiring practices after the fact. Regradless, Stephen Drake, research analyst at Not Dead Yet has good reason to be outraged. The Daily Princetonian original article contained a terrible error that was quickly, though inadequately, corrected . Although corrected by an editorial note, this does not change the fact the original article stated Not Dead Yet protests were "violent" and further implied they were responsible for death threats that were levied when Singer was hired. I strongly suggest you read Drake's entry about Singer and the mischaracterization of Not Dead Yet at their blog. I need not repeat what Drake wrote for his words are powerful on their own. What I want to know is to what degree was Singer involved in this misdirection? Did Singer characterize Not Dead Yet Protests to the author as violent? Does he think Not Dead Yet was responsible for the deathe threats he received when he was hired in 1999? Perhaps the author simply made a mistake. I doubt these questions will ever be answered and they highlight a penchant Singer has--when he is criticized he falls back on the same response. Poor Singer is quickly and harshly judged because his views are taken out of context. Critics rely on short summaries of his work and do not understand or take the time to read the corpus of his writings on a particular subject. This approach has been wildly successful and derailed many harsh analyses. This is why I consider him to be an ill tempered polemicist rather than a scholar willing to exchange opposing ideas. Singer effectively diverts attention from the real issues at hand. For instance, when he was hired by Princeton the controversy surrounding his appointment overshadowed the fact he was to be the Ira W. DeCamp Professor of Bioethics in the University Center for Human Values. Singer was not a bioethicist in 1996. He is not a bioethicist in 2009. Singer's area of specialization is ethics, particularly applied ethics. His work is certainly is within the realm of bioethics as are most of his controversial and extreme views. This is not the place or time to delve into this aspect of his career. Instead, I will focus on the article in the Daily Princetonian and how it conflicts with other statements made by Singer. I am doing this so I am not accused of taking his words out of context.
In the Daily Princetonian Singer noted that when he "joined Princeton's faculty in the fall of 1999, he expected good students and good seminars, but he never anticipated the backlash: a large-scale protest against his appointment that included the arrest of 14 activists outside Nassau Hall on Sept. 21, 1999". Let me contrast this statement with the following from the text Peter Singer Under Fire published earlier this year. "I had an inkling my appointment at Princeton was not going to pass unnoticed when someone forwarded me a message that Margaret Tighe, a leader of the Australian anti-abortion movement, had sent to anti-abortion groups in the U.S. Tighe told her U.S. friends about my views, and suggested that they might like to give me a warm welcome. They did". Given the fact Singer had drawn protests in the past, particularly in Germany, he must have been aware that the "warm welcome" referred to was surely meant to be hostile if not vitriolic. And here I am not referring to Not Dead Yet but rather pro-life groups who Singer wrote believed were most likely responsible for the death threats he received. Singer noted that after Not Dead Yet protests made headlines in the New York Times he was inundated with media requests. In recalling this episode he wrote "The worst aspect of the publicity was that both Shapiro and I received death threats. Since American pro-life activists have murdered doctors who carried out abortions, the threats had to be taken seriously". There can be no question here: Singer believes pro-life groups were responsible for the death threats and Not Dead Yet responsible for headlines. He further argues that the Not Dead Yet protests had no support on campus. That may or may not be true but he drew the wrath of many others among them Steve Forbes, alumni of Princeton and trustee who withdrew all financial support as a result of Singer's appointment. The New York Times considered Singer's appointment controversial and compared it to Bertrand Russell's appointment to the City College of New York in 1940.
Surely any person with an ounce of common sense would conclude protests from a host of groups Singer had alienated would mount a significant protest. Simply put, Not Dead Yet did the best job of protesting. Singer recalled in Peter Singer Fires Back that "On my first day of classes, hundreds of protesters, some of whom came from as far away as Chicago descended on Nassau Hall, the center of the university's administration. Several members of Not Dead Yet chained their wheelchairs to the doors of the building, blocking the entrances for two hours before they were removed by police. (My own class was undisturbed, thanks to a security cordon around the building in which it was held.) The protest made good television and was widely covered." This is called civil disobedience, a particularly effective means of protesting. But in this case the protests backfired. The New York Times asked SInger to write an article and restated his well entrenched views in magazine section entitled "The Singer Solution to World Poverty". This caught the attention of the editors at Harper Collins who published Singer's Writings on an Ethical Life. This text cemented his reputation on American soil and he has been working at Princeton ever since.
I find Singer as frustrating as Christopher Reeve was in terms of disability rights. Singer is a gifted writer, well schooled at crafting convincing arguments that are often wrong in my opinion. Likewise, Reeve quest for cure, a laudable goal, obscured if not damaged the fight for disability rights. Thus I find statements by Harold Shapiro, university president when Singer was hired frustrating in the extreme. For example, in the Daily Princetonian Shapiro stated "A university is a place that is at all times questioning the values we have, not just committing to the views we have. One of the roles of a university is to question existing arrangements and maybe suggest better ways of going about things, thinking about things." Well said. And how about starting with questioning the equality of people with a disability, the same people Singer is willing to kill at birth. How about questioning why 19 years after the ADA was passed universities and colleges across the country remain hostile to the inclusion of students with disabilities. How about questioning why more disability studies programs do not exist at top flight schools like Princeton. How about including disability related texts into the curriculum. How about making Princeton the most accessible and open campus to students and faculty members with a disability. These are questions Princeton and other universities should be questioning. Instead we have a polemicist such as Singer pontificating about ten years at a university that should not have hired him in the first place. No wonder academic life frustrates me to no end.
Monday, October 26, 2009
The Law and the Ashley Treatment
Solidarity. Solidarity is something people with a disability lack. We people with a disability lack solidarity among ourselves. People with a disability have little or no support from the general population. Worse yet, those unfamiliar with disability too often think disability is about a medical condition or physical deficit alone. Rarely if ever does the average citizen connect disability rights and civil rights as one in the same. Thus when I state there is no difference between myself and all other people with a disability I am looked at as though I have two heads. Puzzlement is compounded when I maintain there is no difference between myself, a middle aged man with a PhD from Ashley X who is profoundly disabled physically and cognitively. I am often asked why I hold such a "radical viewpoint". My views are steeped in not just disability identity but a thorough understanding of past abuses. Think here of Eugenics, Euthanasia of people with disabilities, forced institutionalization, ugly laws at the turn of the century etc. These travesties of justice have been on my mind ever since I read a long and frightening article by Christine Ryan (Revisiting the Legal Standards that Govern Requests to Sterilize Profoundly Incompetent Children: In Light of the Ashley Treatment, Is a New Standard Appropriate"). Ryan's article is hard to read for a layman and I am not by any stretch of the imagination a legal scholar. In fact Ryan's article reminds me of a Popular Mechanics article circa 1945. There is an interesting introduction, a long highly technical body of the article, and a pithy conclusion with long lasting implications. The conclusion Ryan reached gave my crippled body the chills. She wrote:
The Constitution provides that no state shall “deprive any person of life, liberty, or property, without due process of law.” Who qualifies as a “person” has generated much debate, especially in the context of the profoundly disabled. Persons are entitled to full moral rights and legal status, while nonpersons are not. Depending on the definition of personhood, some profoundly incompetent individuals may not exhibit the necessary characteristics. (pp. 295-6)
Yikes, how many people can look at another human being and believe they are a non-person? This is what a Canadian mom at Life with a Severely Disabled Child questioned on her blog. This observation made me think long and hard about the legal aspects of the Ashley Treatment. In thinking back at what Ashley's parents wrote I recalled that they were required to obtain legal advice to insure the hysterectomy complied with Washington State law. The parents consulted Larry Jones, a Seattle based lawyer with experience advocating for parents of children with developmental disabilities. It has been noted Jones was inspired to enter into this specialization because he had a daughter with severe disabilities. In Jones' legal opinion a court order was not required because sterilization of Ashley was not the sole or primary purpose of the Ashley Treatment. Relying on this advice, the hospital and doctors went ahead with the surgery on Ashley.
In retrospect I simply concluded the parents got bad or at least incorrect legal advise. Lawyers are human, the law subject to a myriad of interpretations and I moved on and did not give the issue much thought--or at least until Ryan tried to describe "incompetent" people as "non-persons". This inspired me to look at the case law upon which it is illegal to sterilize people in the state of Washington. Washington case law on sterlization stems back to In re Guardianship of Hayes circa 1991. While the cognitive ability of Ashley and in the case law are different, the conclusions reached by the court are clear cut. The Hayes court described the way in which sterilization petitions must proceed: Here I quote from an article by Jillian Kornblatt from this year entitled "The Ashley Treatment: The Current Legal Framework Protects the Wrong Rights":
The decision must be made in a superior court proceeding in which, using a clear, cogent, and convincing standard, the court finds that: (1) a disinterested guardian ad litem represents the incompetent individual’s interests; (2) the court receives independent medical, psychological, and social evaluations; (3) the court hears and considers the individual’s views as much as
possible; (4) the individual is incapable of making her own decision about sterilization and is unlikely to be able to in the
foreseeable future; (5) the individual has a need for contraception, including findings that the individual is
physically capable of procreation, likely to engage in sexual activity that is likely to lead to pregnancy in the near future,
and is permanently incapable of caring for a child, even with reasonable assistance; and (6) that there are no alternatives to
sterilization, other contraceptive measures have proved unworkable, the proposed sterilization is the least invasive
option, a reversible or “less drastic” option will not be available soon, and there is not an impending advance in the treatment
of the individual’s disability.
Based on my reading of Hayes it seems obvious that Ashley's parents would not have been able to meet the above requirements given the bias against sterilization. Surely some criteria could have been met but certainly not all as required in points one through six quoted above. Again, I am not a legal scholar but it seems that common sense dictates that a court order was required. However, none was sought and I cannot help but wonder why. Did Jones know the court would have ruled against Ashley parents? Could he have been willing to take the blame after the fact? Jones has a daughter with severe disabilities and is possibly biased. Why did the doctors and hospital accept without question the opinion of a single lawyer? Given the extreme, irreversible and controversial nature of the procedures involved I would think more than one lawyer needed to be consulted. To me, this gets to the heart of the cultural issues involved. Did Ashley doctors, parents, and ethics committee all consider Ashley so different she was not considered to be fully human? I am sure no one articulated this but was this a hidden or unconsciously accepted viewpoint? Was Ashley so different, so impaired cognitively that she did not share the same rights as other children? No one would consider the Ashley Treatment a viable option for a "normal" child. If this is the case what does it say about the way we view children like Ashley and by extension adults like me with a physical disability? History shows us people with a disability have been subjected to abuses of all types. That history is replete with physical violations and civil rights abuses that are appalling. And this exactly why the Ashley Treatment, renamed in recent years as growth attenuation is nothing short of dangerous. In fact it reminded me of the olden days of rehab when I was paralyzed 30 years ago. It was assumed back then high level quads had no quality of life and were often permitted to die or as doctors put it let nature take its course. With the Ashley Treatment we have inverse reasoning. For Ashley nature, that is her body, is the enemy and what could be worse than an adult female with profound cognitive and physical disabilities. Well in this day and age where all sorts of body modification is possible doctors have the power and technology to change the human body and rendered Ashley small. Just because this is possible does not make it right or legally acceptable. There is no question Ashley was illegally sterilized but that is a small part of the larger cultural discourse, one that has implications to all people with a disability. People like Ashley, me and all those in-between.
The Constitution provides that no state shall “deprive any person of life, liberty, or property, without due process of law.” Who qualifies as a “person” has generated much debate, especially in the context of the profoundly disabled. Persons are entitled to full moral rights and legal status, while nonpersons are not. Depending on the definition of personhood, some profoundly incompetent individuals may not exhibit the necessary characteristics. (pp. 295-6)
Yikes, how many people can look at another human being and believe they are a non-person? This is what a Canadian mom at Life with a Severely Disabled Child questioned on her blog. This observation made me think long and hard about the legal aspects of the Ashley Treatment. In thinking back at what Ashley's parents wrote I recalled that they were required to obtain legal advice to insure the hysterectomy complied with Washington State law. The parents consulted Larry Jones, a Seattle based lawyer with experience advocating for parents of children with developmental disabilities. It has been noted Jones was inspired to enter into this specialization because he had a daughter with severe disabilities. In Jones' legal opinion a court order was not required because sterilization of Ashley was not the sole or primary purpose of the Ashley Treatment. Relying on this advice, the hospital and doctors went ahead with the surgery on Ashley.
In retrospect I simply concluded the parents got bad or at least incorrect legal advise. Lawyers are human, the law subject to a myriad of interpretations and I moved on and did not give the issue much thought--or at least until Ryan tried to describe "incompetent" people as "non-persons". This inspired me to look at the case law upon which it is illegal to sterilize people in the state of Washington. Washington case law on sterlization stems back to In re Guardianship of Hayes circa 1991. While the cognitive ability of Ashley and in the case law are different, the conclusions reached by the court are clear cut. The Hayes court described the way in which sterilization petitions must proceed: Here I quote from an article by Jillian Kornblatt from this year entitled "The Ashley Treatment: The Current Legal Framework Protects the Wrong Rights":
The decision must be made in a superior court proceeding in which, using a clear, cogent, and convincing standard, the court finds that: (1) a disinterested guardian ad litem represents the incompetent individual’s interests; (2) the court receives independent medical, psychological, and social evaluations; (3) the court hears and considers the individual’s views as much as
possible; (4) the individual is incapable of making her own decision about sterilization and is unlikely to be able to in the
foreseeable future; (5) the individual has a need for contraception, including findings that the individual is
physically capable of procreation, likely to engage in sexual activity that is likely to lead to pregnancy in the near future,
and is permanently incapable of caring for a child, even with reasonable assistance; and (6) that there are no alternatives to
sterilization, other contraceptive measures have proved unworkable, the proposed sterilization is the least invasive
option, a reversible or “less drastic” option will not be available soon, and there is not an impending advance in the treatment
of the individual’s disability.
Based on my reading of Hayes it seems obvious that Ashley's parents would not have been able to meet the above requirements given the bias against sterilization. Surely some criteria could have been met but certainly not all as required in points one through six quoted above. Again, I am not a legal scholar but it seems that common sense dictates that a court order was required. However, none was sought and I cannot help but wonder why. Did Jones know the court would have ruled against Ashley parents? Could he have been willing to take the blame after the fact? Jones has a daughter with severe disabilities and is possibly biased. Why did the doctors and hospital accept without question the opinion of a single lawyer? Given the extreme, irreversible and controversial nature of the procedures involved I would think more than one lawyer needed to be consulted. To me, this gets to the heart of the cultural issues involved. Did Ashley doctors, parents, and ethics committee all consider Ashley so different she was not considered to be fully human? I am sure no one articulated this but was this a hidden or unconsciously accepted viewpoint? Was Ashley so different, so impaired cognitively that she did not share the same rights as other children? No one would consider the Ashley Treatment a viable option for a "normal" child. If this is the case what does it say about the way we view children like Ashley and by extension adults like me with a physical disability? History shows us people with a disability have been subjected to abuses of all types. That history is replete with physical violations and civil rights abuses that are appalling. And this exactly why the Ashley Treatment, renamed in recent years as growth attenuation is nothing short of dangerous. In fact it reminded me of the olden days of rehab when I was paralyzed 30 years ago. It was assumed back then high level quads had no quality of life and were often permitted to die or as doctors put it let nature take its course. With the Ashley Treatment we have inverse reasoning. For Ashley nature, that is her body, is the enemy and what could be worse than an adult female with profound cognitive and physical disabilities. Well in this day and age where all sorts of body modification is possible doctors have the power and technology to change the human body and rendered Ashley small. Just because this is possible does not make it right or legally acceptable. There is no question Ashley was illegally sterilized but that is a small part of the larger cultural discourse, one that has implications to all people with a disability. People like Ashley, me and all those in-between.
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