I have been spending the last few evenings savoring a book I have already read. I read the book last year and was inspired to read it again because I met the author at a conference recently. I am referring to Susan Schweik�s Ugly Laws: Disability in Public. This book not only reveals a little known aspect of disability history, the so-called ugly laws, but is based on original research and reliance on archival material no other scholar has delved deeply into. I know how hard and time consuming task because I wrote an intellectual biography of Leslie A. White that was based on archival material.
I admire everything about Schweik�s book�the writing is clear and concise. Schweik is able to illustrate larger points about disability using specific examples from the ugly laws. Even the book cover is outstanding. It has a well-known photograph by Paul Stand circa 1916 known simple as �Blind Woman�. I have looked at this photography many times and wondered what did Strand think when he took it. What if anything did this woman say to Strand? I have always found the image haunting. What was this woman�s life like? Was she happy or sad? This in turn makes me think how the lives of people with a disability have radically changed since 1916 and the enforcement of the ugly laws. To begin, we people with a disability live. That is most of us have a normal life expectation. I am proof positive of this as are many men and women who have spent the majority of their lives paralyzed. But what sort of life do we lead and how does it compare to those that came before us. Schweik, in part, has filled this gap. Schweik calls the stories of our crippled forefathers mendicant literature. Schweik writes �Mendicant pieces are books and pamphlets written by handicapped or penniless persons, usually telling their life story, and peddled by them to earn a living.�. This history of disability is not known nor is it taught widely. Sadly, such a history is not respected or valued even on college campuses. Schweik writes about a disturbing but telling experience. As she was conducting archival research she recalled �There�s something for everyone here another Harvard librarian said, apparently amused at my interest, as she brought me a catalogue organized alphabetically [Amputee] followed by [Blind] and then [Crippled]. Here� presided over by dreams of free speech, by ghosts of eugenics, and by the medical catalogue of impairments, mendicant literature speaks of the ugly laws�.
Ugly laws led to the production of medicant literature. This literature, the life history of people with disabilities, is important. It is important because it illustrates a vibrant past and has troubling implications about the present. We people with a disability have not created an effective political coalition. We are hopelessly splintered. Blind people advocate for themselves as do the deaf, the paralyzed, etc. While much advocating is performed it is largely ineffective. Have we really advanced far beyond an antiquated medical model of disability? In a word, no. I sincerely doubt people think about disability rights until it affects them directly. This is a problem we have not begun to address. All the laws in the world will not advance disability rights unless there is a social demand for such rights. As of today, I feel as though disability rights are invisible or worse an annoyance to many. Do we really need those expensive ramps and elevators given how few people use them? I would contend we as a society are hiding behind laws and regulations and bogged down in the minutiae of access when our problem is much larger and deeply rooted. We do not ask the important questions: why are disability rights thought to be different from other civil rights? Why do we tolerate inaccessible building and a shockingly high unemployment rate? Why are lifts not on every school bus in America and an interpreter for the deaf at every public event? These are the sorts of questions we should be asking. These are the sorts of questions we should be united to solve.
Callous Hands and Loss
Sunday, April 24, 2011
It has been about seven months since I found the wound on my hip. I never dreamed I would still be dealing with the wound all these months later. I hate wound care and changing my dressing. It is a daily reminder of how fragile the paralyzed human body can be. I am also appalled by all what I have missed. My life since last September has been like a black hole. I missed the Fall harvest. I missed teaching a full academic year. I missed an awesome winter and did not ski once. Seven months is along time. I can now see that my body has changed. I am not better for this experience nor is my body stronger. I know my strength will come back once I am able to sit up all day and resume my regular activities. I am sure I will be kayaking at some point�surely before the end of the summer. This prospect excites me.
Since I can get up more today, a warm sunny Easter Sunday, I went for a walk with my son around my property. Yikes, I have my work cut out for me. My vegetable garden is a mess. Last Fall I did not clear it out. My garden beds around my home are a mess. The deer have had a field day. I have a tree down that I need to cut up with a chain saw and then split up the wood for the wood-burning stove. My head is spinning with all that needs to be done. This does not bother me�I love manual labor. It clears the mind and strengthens the body. It was not until I was inside and my son engrossed on-line that I had a strange sense of loss. I looked at my hands carefully and was stunned to realize my callous hands are smooth. My hands have not been callous free in thirty years. My hands have felt like like shoe leather for decades. I am both proud and embarrassed by this. I tell people with hands like mine no one pushes me around. This is both literal and figurative. My hands are like those of a man who has performed manual labor his entire life. In short, I have ditch digger hands. I am extremely self-conscious about my rough hands. They are rough and hard�an occupational hazard. No way to get around this. A solution does not exist�not that I want or am seeking a solution. Amazingly I am sad to be without my calloused rough hands. I am stunned I miss my callous hands. I have always tried to hide my hands from women. Surely a woman wants a man�s hands to not feel so hard and calloused. How ironic. I was not happy with calloused hands and now I am not happy with callous free hands. For the first time in my life, I want my calloused hands. It was not until today I realized being self-conscious was misplaced. My calloused hands are a symbol of an active life. A life I hope to get back to very soon.
Since I can get up more today, a warm sunny Easter Sunday, I went for a walk with my son around my property. Yikes, I have my work cut out for me. My vegetable garden is a mess. Last Fall I did not clear it out. My garden beds around my home are a mess. The deer have had a field day. I have a tree down that I need to cut up with a chain saw and then split up the wood for the wood-burning stove. My head is spinning with all that needs to be done. This does not bother me�I love manual labor. It clears the mind and strengthens the body. It was not until I was inside and my son engrossed on-line that I had a strange sense of loss. I looked at my hands carefully and was stunned to realize my callous hands are smooth. My hands have not been callous free in thirty years. My hands have felt like like shoe leather for decades. I am both proud and embarrassed by this. I tell people with hands like mine no one pushes me around. This is both literal and figurative. My hands are like those of a man who has performed manual labor his entire life. In short, I have ditch digger hands. I am extremely self-conscious about my rough hands. They are rough and hard�an occupational hazard. No way to get around this. A solution does not exist�not that I want or am seeking a solution. Amazingly I am sad to be without my calloused rough hands. I am stunned I miss my callous hands. I have always tried to hide my hands from women. Surely a woman wants a man�s hands to not feel so hard and calloused. How ironic. I was not happy with calloused hands and now I am not happy with callous free hands. For the first time in my life, I want my calloused hands. It was not until today I realized being self-conscious was misplaced. My calloused hands are a symbol of an active life. A life I hope to get back to very soon.
Growth Attenuation and the Law
Thursday, April 21, 2011
A number of articles about the growth attenuation and Ashley X have been published that discuss the case from a legal perspective. I find these articles heavy going. None have impressed me and many seem to be authored by law students who latched onto a hot button issue. I will readily admit I am not a lawyer nor do I have a thorough grasp of the technical legal issues involved in growth attenuation. However it is my hope that the WPAS remains committed to protecting the rights of children such as Ashley and all others with a disability. I would think it is in the best interest of the WPAS and Seattle Children's Hospital to continue to work together since they reached an agreement. I am equally sure the WPAS nor Seattle Children's Hospital wants to see Washington State law is not violated again. One Ashley X from my perspective was too many. I do have cause for concern after reading a letter written by Jeffrey M. Sconyers, the lawyer that represents the hospital in the Ashley case. The letter I refer to was published in response to the Hastings Center Report written by the Seattle Growth Attenuation and Ethics Working Group (I have already delved into these findings).
Sconyers makes one factual correction to the Hastings Center Report. Sconyers notes Seattle Children's Hospital did not "agree to obtain a court order prior to any future medical intervention to attenuate growth in children with developmental disabilities". Rather Sconyers states "we agreed that we would not provide such intervention unless we had received a valid order from a court of competent jurisdiction, not subject to appeal, authorizing such intervention in a given specific case". Sconyers argues there is a difference. He wrote: "We recognized that as a hospital that stood to benefit financially from approval of growth attenuation treatment, we had an irreducible conflict of interest that made it improper for the hospital to seek court approval for the care. That responsibility rests with the parents or legal guardians of the child whose growth may be limited, not the hospital."
Let's not mince words here: the hospital is passing the buck. They passed the buck in the past and are doing so again. The hospital admitted error in the past, an error that cannot ever be corrected. Illegal treatment, illegal surgery, took place. Who was to blame? The hospital and the bad legal advice Ashley parents received. The victim was a little girl. Now we are being told by the hospital attorney that it is in the hands of the court. They have an "irreducible conflict of interest". The skeptic in me wants to note why they ignored this fact originally only to see it clearly today. Leaving that aside, do we really trust the courts to protect the rights of children like Ashley from the interests of their own parents? Need I detail the myriad of ways the court has failed people with a disability in the past. I suggest if you think i am biased read the work of Lenny Davis and the legal term "bending over backwards". In short, I have absolutely no faith in the court. Remove all the rhetoric that has surrounded Ashley X and the ethics of growth attenuation and it boils down to one thing for me: we as a society cannot target one population and absolve ourselves of a human rights violation. It is not about dignity, self interested parents, or doctors trying to help one little girl and her family. It is a clear case of bias, bias in which a specific population is considered somehow not fully human. The implications of this are sobering and dangerous.
Sconyers makes one factual correction to the Hastings Center Report. Sconyers notes Seattle Children's Hospital did not "agree to obtain a court order prior to any future medical intervention to attenuate growth in children with developmental disabilities". Rather Sconyers states "we agreed that we would not provide such intervention unless we had received a valid order from a court of competent jurisdiction, not subject to appeal, authorizing such intervention in a given specific case". Sconyers argues there is a difference. He wrote: "We recognized that as a hospital that stood to benefit financially from approval of growth attenuation treatment, we had an irreducible conflict of interest that made it improper for the hospital to seek court approval for the care. That responsibility rests with the parents or legal guardians of the child whose growth may be limited, not the hospital."
Let's not mince words here: the hospital is passing the buck. They passed the buck in the past and are doing so again. The hospital admitted error in the past, an error that cannot ever be corrected. Illegal treatment, illegal surgery, took place. Who was to blame? The hospital and the bad legal advice Ashley parents received. The victim was a little girl. Now we are being told by the hospital attorney that it is in the hands of the court. They have an "irreducible conflict of interest". The skeptic in me wants to note why they ignored this fact originally only to see it clearly today. Leaving that aside, do we really trust the courts to protect the rights of children like Ashley from the interests of their own parents? Need I detail the myriad of ways the court has failed people with a disability in the past. I suggest if you think i am biased read the work of Lenny Davis and the legal term "bending over backwards". In short, I have absolutely no faith in the court. Remove all the rhetoric that has surrounded Ashley X and the ethics of growth attenuation and it boils down to one thing for me: we as a society cannot target one population and absolve ourselves of a human rights violation. It is not about dignity, self interested parents, or doctors trying to help one little girl and her family. It is a clear case of bias, bias in which a specific population is considered somehow not fully human. The implications of this are sobering and dangerous.
Life Support: Not What You Think
Thursday, April 14, 2011
Last year I read about Dan Crews. It was a sad story I chose not to write about. Crews experienced a spinal cord injury when he was three years old and is a ventilator dependent quadriplegic. Briefly put, he wanted to die. He wanted someone to turn off his respirator and he went public with this request. The story made the news and I recall not being surprised that many supported his desire to die. Suicidal thoughts for high level quadriplegics shortly after injury are not uncommon. I tend to think it is a sane and rational response to a devastating injury and radically life altering event. However, the vast majority of people with such an injury move on with life. These are people you never read about in newspapers. I thought that Crews wish to end his life was nothing more than a public cry for help. I did not want to step into the fray though I was disappointed by the media coverage. It was maudlin in the extreme. It was also overwhelming supportive. For example, in 2010 the Milwaukee Wisconsin Journal Sentinel noted:
Every day, Crews lies in bed for hours, staring at posters of cheerleaders, watching sports he will never play. When he wants to make a call or use the computer, he asks his nurses to bring him the telephone, which he pecks at with a stick he holds in his mouth. When he's thirsty, he calls for a nurse, or for his mom, Cheryl Crews, who lives with him. They bring a drink and hold the straw up to his mouth for him as he sips.
"I have no friends. I have no education. No education prospects. No job prospects. I have no love prospects," he said. "All I want is to no longer live like this."
He is physically incapable of ending his life.
The message here is not subtle. Kill the poor man already! Slow down. Forget the melodrama and please ask the pertinent question. Why exactly does Crews want to die? It has nothing to do with paralysis but rather with his quality of life. Thus the question that should be posed is why is the quality of his life so poor. Why does he have no friends? Why does he live with his mother? Why does he lack an adequate education? Why does he not have a job? Why is his love life lacking? These questions could be used as a spring board to address a multitude of obstacles people like Crews and others with spinal cord injuries routinely encounter. Crews is far from unique--indeed, the only thing that sets him apart from others is his wish to die. He is the exception not the rule to how people cope with spinal cord injury. You will never read about these other people. They do not make good copy. They will not reinforce societal beliefs that a devastating spinal cord injury such as the one Crews experienced is a tragedy. This tragedy precludes the ordinary--a job, family, education, and a girl friend. Again, I ask why. Why does a disability, even a high level spinal cord injury, preclude a rich a full life? The answer is not complex--society does not value or support such lives. The fact is Crews has the same inalienable civil rights as any person that can walk. He has had these rights since the ADA was passed. Just because the law states he has these rights does not mean we as a society support them. I know they do not.
I had not given Crews much thought until this week when his name came up in the news yet again. I had assumed Crews was doing better, that positive change had taken place. The jaundiced part of me thought perhaps publicity is not such a bad thing. I was wrong. Crews is still unhappy and wants to die but for different reasons. The $4.2 million settlement Crews received after he was injured is gone. He is now deeply in debt, likely to lose his home because of his medical bills. Where will Crews end up living? In a nursing home. Life in a nursing home is in the words of Crew "hell on earth". For a young sentient male this is quite true. Crews stated "I thought I wouldn't live to see this. It started to dawn on me last year that money was leaking out like a sieve. I will lose the one thing that makes my life tolerable: my privacy and my family." Going bankrupt to pay medical bills is exceedingly common today. But for those with disabilities the choices after one goes bankrupt are exceedingly limited. There are inherent dangers here. People with a disability know this as does the medical establishment. And like all others humans people in the medical establishment are subject to individual bias. This bias can be deadly for people on the margins like Crews and others like me with a spinal cord injury. Such individuals do not receive equal treatment socially or medically. We are, I am afraid, returning to a harsher time when able bodied people determined when disability is too much to bear. This thinking is so wrong it is staggering to me. The obstacles we people with a disability encounter are largely social. No one wants to engage in a discussion about the reasons why we remain socially isolated, under educated, and unemployed. The only thing keeping Crews in his room are social barriers we as a society are willing to let exist. Crews went to a local college and had dreams of a career--dreams he gave up on because the barriers to going to a school away from home were too overwhelming. This too is not unusual. Indeed, I refer this as academia's dirty little secret. High level quadriplegics are effectively barred from attending college. The social and architectural barriers are too imposing.
How many lives such as Crews will be lost before we choose to change? How many lives have been derailed already? It is so easy to misconstrue the lessons we can learn from Crews hardship. For example, in a story about Crews last year year the UWM Post noted:
"He does not have a career. He does not have a social life. He does not have a love life. He is stuck in a bedroom, day after day after day. He cannot enjoy and appreciate all the little things we, as able-bodied beings, take for granted � for instance, the sun warming our faces and the sand beneath our toes as we walk along Lake Michigan�s beach on a beautiful day. Take a moment to reflect if a life without all the simple pleasures sounds like something you would be content with.
The Journal Sentinel writes, �Yet stories like Crews� are troubling to disability rights activists. They argue his quality of life doesn�t have to be inherently bad; rather, they say, society doesn�t provide the resources for Crews and others to live a satisfying life.�
My question is: what resource could possibly be provided to someone in Crews� condition? I have wracked my brain trying to think of something � anything � that could even begin to make a person destined to the confines of their bedroom, due to accident or illness, feel as if they were not missing out on, well, life. I�ve got nothing."
Let me respond to this inane melancholy. I have not felt my toes in 32 years. I have tenuous control over my bladder and bowels. I cannot do many things, ordinary things, those that can walk do without thought or appreciation. So what. I do things differently. I use a wheelchair and the barriers I encounter are numerous and unnecessary. Yet when I go outside my home and feel the sun on my face I too am happy. I am sure Crews is happy when he too feels the sun on his face. I cannot walk along the shores of Lake Michigan. I have instead paddled along the shore in my kayak. I have enjoyed pushing my wheelchair for many miles in the city of Chicago and been to many of its famous museums and done research at the University of Chicago. I have eaten at many steak houses and consumed my fair share of deep dish pizza and hot dogs too. In doing so I have concluded life is pretty sweet. The problem is not with my body but with the maudlin sentiments in the UWM Post and larger news outlets like the New York Times, Chicago Tribune, and LA Times help perpetuate. All these papers have assumed Crews request to die is reasonable. Sorry this is just wrong. If I have learned anything about life since I was paralyzed when I was 18 years old it is that life is what you make it. I consider myself lucky. I have a great family, a son I adore and love more than I ever thought possible, good friends, and a lovely home. I did not get all these things in a social vacuum. Life may be what you make it to borrow a trite old phrase but I would add the proviso people need to be given a chance and that chance includes social supports. In this era of draconian budget cuts and health insurance companies that operate without ethics or government oversight people like Crews have virtually no chance to lead a rich and full life. To me that is the real story, one that has been ignored.
Every day, Crews lies in bed for hours, staring at posters of cheerleaders, watching sports he will never play. When he wants to make a call or use the computer, he asks his nurses to bring him the telephone, which he pecks at with a stick he holds in his mouth. When he's thirsty, he calls for a nurse, or for his mom, Cheryl Crews, who lives with him. They bring a drink and hold the straw up to his mouth for him as he sips.
"I have no friends. I have no education. No education prospects. No job prospects. I have no love prospects," he said. "All I want is to no longer live like this."
He is physically incapable of ending his life.
The message here is not subtle. Kill the poor man already! Slow down. Forget the melodrama and please ask the pertinent question. Why exactly does Crews want to die? It has nothing to do with paralysis but rather with his quality of life. Thus the question that should be posed is why is the quality of his life so poor. Why does he have no friends? Why does he live with his mother? Why does he lack an adequate education? Why does he not have a job? Why is his love life lacking? These questions could be used as a spring board to address a multitude of obstacles people like Crews and others with spinal cord injuries routinely encounter. Crews is far from unique--indeed, the only thing that sets him apart from others is his wish to die. He is the exception not the rule to how people cope with spinal cord injury. You will never read about these other people. They do not make good copy. They will not reinforce societal beliefs that a devastating spinal cord injury such as the one Crews experienced is a tragedy. This tragedy precludes the ordinary--a job, family, education, and a girl friend. Again, I ask why. Why does a disability, even a high level spinal cord injury, preclude a rich a full life? The answer is not complex--society does not value or support such lives. The fact is Crews has the same inalienable civil rights as any person that can walk. He has had these rights since the ADA was passed. Just because the law states he has these rights does not mean we as a society support them. I know they do not.
I had not given Crews much thought until this week when his name came up in the news yet again. I had assumed Crews was doing better, that positive change had taken place. The jaundiced part of me thought perhaps publicity is not such a bad thing. I was wrong. Crews is still unhappy and wants to die but for different reasons. The $4.2 million settlement Crews received after he was injured is gone. He is now deeply in debt, likely to lose his home because of his medical bills. Where will Crews end up living? In a nursing home. Life in a nursing home is in the words of Crew "hell on earth". For a young sentient male this is quite true. Crews stated "I thought I wouldn't live to see this. It started to dawn on me last year that money was leaking out like a sieve. I will lose the one thing that makes my life tolerable: my privacy and my family." Going bankrupt to pay medical bills is exceedingly common today. But for those with disabilities the choices after one goes bankrupt are exceedingly limited. There are inherent dangers here. People with a disability know this as does the medical establishment. And like all others humans people in the medical establishment are subject to individual bias. This bias can be deadly for people on the margins like Crews and others like me with a spinal cord injury. Such individuals do not receive equal treatment socially or medically. We are, I am afraid, returning to a harsher time when able bodied people determined when disability is too much to bear. This thinking is so wrong it is staggering to me. The obstacles we people with a disability encounter are largely social. No one wants to engage in a discussion about the reasons why we remain socially isolated, under educated, and unemployed. The only thing keeping Crews in his room are social barriers we as a society are willing to let exist. Crews went to a local college and had dreams of a career--dreams he gave up on because the barriers to going to a school away from home were too overwhelming. This too is not unusual. Indeed, I refer this as academia's dirty little secret. High level quadriplegics are effectively barred from attending college. The social and architectural barriers are too imposing.
How many lives such as Crews will be lost before we choose to change? How many lives have been derailed already? It is so easy to misconstrue the lessons we can learn from Crews hardship. For example, in a story about Crews last year year the UWM Post noted:
"He does not have a career. He does not have a social life. He does not have a love life. He is stuck in a bedroom, day after day after day. He cannot enjoy and appreciate all the little things we, as able-bodied beings, take for granted � for instance, the sun warming our faces and the sand beneath our toes as we walk along Lake Michigan�s beach on a beautiful day. Take a moment to reflect if a life without all the simple pleasures sounds like something you would be content with.
The Journal Sentinel writes, �Yet stories like Crews� are troubling to disability rights activists. They argue his quality of life doesn�t have to be inherently bad; rather, they say, society doesn�t provide the resources for Crews and others to live a satisfying life.�
My question is: what resource could possibly be provided to someone in Crews� condition? I have wracked my brain trying to think of something � anything � that could even begin to make a person destined to the confines of their bedroom, due to accident or illness, feel as if they were not missing out on, well, life. I�ve got nothing."
Let me respond to this inane melancholy. I have not felt my toes in 32 years. I have tenuous control over my bladder and bowels. I cannot do many things, ordinary things, those that can walk do without thought or appreciation. So what. I do things differently. I use a wheelchair and the barriers I encounter are numerous and unnecessary. Yet when I go outside my home and feel the sun on my face I too am happy. I am sure Crews is happy when he too feels the sun on his face. I cannot walk along the shores of Lake Michigan. I have instead paddled along the shore in my kayak. I have enjoyed pushing my wheelchair for many miles in the city of Chicago and been to many of its famous museums and done research at the University of Chicago. I have eaten at many steak houses and consumed my fair share of deep dish pizza and hot dogs too. In doing so I have concluded life is pretty sweet. The problem is not with my body but with the maudlin sentiments in the UWM Post and larger news outlets like the New York Times, Chicago Tribune, and LA Times help perpetuate. All these papers have assumed Crews request to die is reasonable. Sorry this is just wrong. If I have learned anything about life since I was paralyzed when I was 18 years old it is that life is what you make it. I consider myself lucky. I have a great family, a son I adore and love more than I ever thought possible, good friends, and a lovely home. I did not get all these things in a social vacuum. Life may be what you make it to borrow a trite old phrase but I would add the proviso people need to be given a chance and that chance includes social supports. In this era of draconian budget cuts and health insurance companies that operate without ethics or government oversight people like Crews have virtually no chance to lead a rich and full life. To me that is the real story, one that has been ignored.
Purple Feather: Offensive in the Extreme
Monday, April 11, 2011
I am stunned by the embedded video produced by Purple Feather, a UK based company. Stunned. Shocked. Offended. Take your pick all would describe my reaction. I rarely post anything about disability rights outside of the United States. I stick with matters as they pertain to the United States because disability is perceived differently in other countries. Sure I am familiar with issues abroad, especially as they relate to Canada and the U.K., but I prefer to keep a focus on this country. We clearly have enough problems of our own. Yet I do from time to time comment about issues abroad. When I do so it is because i have a very strong reaction to a gross injustice that has taken place. The embedded video fits into this category.
I know nothing about the company Purple Feather, an online content specialist. This company writes online and offline content for websites, magazines, books, newsletters, marketing campaigns etc. I suppose they are good at what they do. Portraying people with a disability in a negative way is something i have railed against in the past. It is nothing new. This video however sets an all time new low. While I rail against ads that portray people who use a wheelchair as dependent, this video takes it even further. No pretense is made about the fact a blind man is begging. Ho hum, an every day event I suppose. Shockingly, from an international perspective it is common--the most common world wide "job" for a person with a disability according the the UN is begging. This man is dehumanized in the extreme. The poor bastard cannot not even write a sign worthy of a beggar. This is left to an able bodied woman. You know those all powerful people that can walk, hear, and see. No thought, none, is given to why people with a disability may be forced onto the street to beg. No thought is given to how a blind person can do the ordinary--you know like enjoy a beautiful sunny day. If you are blind you could not appreciate such a day. If you are blind you are reduced to begging on the street. If you are blind you are helpless, dependent upon others. Enter soaring music and pulling at the heart strings of people that know nothing about disability. Judging by the comments posted on You Tube the vast majority of people that saw the video loved it. Yes, it was "moving", "inspirational", "touching" etc.And how many people saw this so called "moving" video. Almost one million! Of those that took the time to press "like" they numbered a staggering 6,621. People such as myself that pressed "dislike" numbered a meager 67. Now I try to ignore comments such as like versus dislike but this made my blood pressure soar! Worse yet, I think it represents the depth of knowledge people have about disability. Here I would put that knowledge close to nil. I do not think people are stupid but rather uneducated. We simply choose not to teach people about disability. We choose not to think disability rights and civil rights are comparable. We choose not to include memoirs written by people with a disability in secondary school curriculums. We do not have disability studies department at every major university. We choose to ignore the ADA whenever possible in the USA. We choose not to employ people with a disability. We choose to provide sub standard education for people with a disability. It is no wonder we rarely see those pesky people with a disability out in public. When we do see them what do we expect to see? According to this film, on the street begging with a shitty sign. But despair not! A good hearted woman will edit that sign and her fellow exemplars of civilization will drop a few coins in the man's tin jar. Is this 1911 or 2011?
Okay, it is obvious I am mad--very mad. And to borrow the classic film line "I am mad as hell and I am not going to take it any more!" Here is what I want readers to do. Send Purple Feather a very angry email. Go to You Tube and mark this film as offensive content. I for one am offended. This is what I did and I swear if this was a US based company I would call up the CEO and complain vociferously.
Education: A Total Failure
Sunday, April 10, 2011
I hate the term special education. To me, there is nothing special about special education. When I was a child they did not call it special education. We had three groups of kids--the smart kids (blue birds), average kids (robins), and the dumb kids (sparrows). We kids all knew who was smart, average, and stupid. The names of pretty little birds was just sanitized window dressing. That window dressing would become and remains known as special education. Special education serves a purpose and does educate those kids deemed "special" as well as those considered "normal" or worse, "gifted". What is taught involves far more than what is deemed important in the classroom. In fact I would argue what takes place in the classroom is of secondary importance. Education puts us on a social path, it is a marker of what we are, will be, and can be. For people with a disability that path involves social negation--we are not defined by who we are but what we are not. What we are not is normal--normal as defined by an educational system that does not see potential but abnormality. We cannot walk. We cannot read. We cannot see. We cannot hear. We cannot learn at the socially prescribed rate. All we are told is what we cannot do. What we cannot do is bad. We are bad. Accordingly, our expectations are limited. We are taught not to expect equality. We do not expect an equal education. We do not expect to be treated with respect. Resentment to our very existence and any money spent on our education abounds. This message is delivered efficiently in secondary schools by our peers, other parents, teachers, the PTA, and administrators.
The clearest symbol of the failure to educate those with disabilities and all who are in some way different is the dreaded short bus. Ask any person who had a disability as a child and mention the short bus and you are sure to prompt a strong reaction. The short bus was supposed to represent progress. And amazingly it was progress. Prior to the passage of IDEA, Individuals with Disabilities Education Act in 1975 children with disabilities were not entitled to a public education. We were banned from public schools for a host of dubious reasons. People such as myself who used a wheelchair for instance were deemed a fire and safety hazard. While the law stated we were entitled to an education we were and to a degree remain segregated. The easiest means of segregation was rooted to the transportation system. Yes, the dreaded short bus is effectively used to this day to segregate students with disabilities. For example, the public school my son attended in the wealthy suburbs of New York has one bus with a wheelchair lift--one. Let me repeat that--one bus circa 2011 or 36 years after IDEA was passed into law (20 years after the ADA). On that short bus every single child with a disability in the district is transported to and from school and on class trips. My son would not be caught dead on that short bus the kids call "the retard bus". Now that is is an education! Children have been taught segregation is the norm. The normal kids rule. The normal kids have power. Kids with a disability are different, special. Being different is judged in relation to the norm. The norm does not include people with a disability. Special education, the short bus and the utter lack of social integration is about establishing lifelong boundaries. We people with a disability are on the outside looking in. The fabric of society does not include people with disabilities. We are broken, sick, wheelchair bound--anything but normal. Lenny Davis has eloquently written about this in Enforcing Normalcy.
The consequences of our failure to teach all children that people, young and old alike, with a disability are equal has profound social and economic consequences. 66% of Americans with a disability are unemployed. A third of people with a disability live at or below the poverty line. Only a small percentage of people with a disability have a college education. An even smaller number, a microscopic percentage, have an advanced degree such as mine. This is a costly failure. It is a failure that leads to social invisibility. We people with a disability live at the margins of social respectability. We were not accepted in schools and we are not accepted in the work force. Our presence is not required or even expected. In this era of draconian budget cuts in education and services for people with disabilities these are grim times. We may be saving money now but I wonder about the social consequences. I wonder how many people with a disability turn their failure to receive an education or a secure a job into self loathing--a personal failure. It is understandable to direct failure inward--I still vividly recall when I was first disabled I was stunned at how differently I was treated. I felt as though I had the plague. I felt as though I was the same person but I sure as hell was not treated as I once was. This caused me to withdraw from others. When I went to college I spent way too much time drinking and smoking pot. I partied hard but I also worked hard at academics--something I was inherently good at. Somehow I knew that education was the only thing that could save me from a life of despair. I was also blessed with outstanding parents who supported and fought right along side me against social injustice. In retrospect these two variables, an outstanding education and supportive parents, are what successful people with a disability have in common. Getting an equal education is very difficult for any person with a disability and good parents are a matter of luck. I was especially lucky--indeed I joke that I hit the parent lottery. But I did have to fight for an education. Sadly, that fight for an education is something people with a disability must still undertake. That fight is different from what I endured. No person is barred from school and told they are a fire hazard. But this does not mean bigotry and exclusion are absent. That fight today entails a lack of equal transportation, socially sanitized and accepted segregation, deep budget cuts as well as resentment "normal" kids somehow are neglected.
The above has been on my mind since i read Jonathan Mooney's wonderful book The Short Bus. This book is filled with delightful stories in a wickedly twisted way. It like a cripple Kerouac's On the Road. I highly recommend this book for it does what few books ever do--make you laugh and think at the same time. How this book made me yearn to travel. As soon as my wound is healed I am going to hit the road. Where i am going, I have no idea. But go I will for travel is akin to a real special education. And if there is one thing I still yearn for it is education.
The clearest symbol of the failure to educate those with disabilities and all who are in some way different is the dreaded short bus. Ask any person who had a disability as a child and mention the short bus and you are sure to prompt a strong reaction. The short bus was supposed to represent progress. And amazingly it was progress. Prior to the passage of IDEA, Individuals with Disabilities Education Act in 1975 children with disabilities were not entitled to a public education. We were banned from public schools for a host of dubious reasons. People such as myself who used a wheelchair for instance were deemed a fire and safety hazard. While the law stated we were entitled to an education we were and to a degree remain segregated. The easiest means of segregation was rooted to the transportation system. Yes, the dreaded short bus is effectively used to this day to segregate students with disabilities. For example, the public school my son attended in the wealthy suburbs of New York has one bus with a wheelchair lift--one. Let me repeat that--one bus circa 2011 or 36 years after IDEA was passed into law (20 years after the ADA). On that short bus every single child with a disability in the district is transported to and from school and on class trips. My son would not be caught dead on that short bus the kids call "the retard bus". Now that is is an education! Children have been taught segregation is the norm. The normal kids rule. The normal kids have power. Kids with a disability are different, special. Being different is judged in relation to the norm. The norm does not include people with a disability. Special education, the short bus and the utter lack of social integration is about establishing lifelong boundaries. We people with a disability are on the outside looking in. The fabric of society does not include people with disabilities. We are broken, sick, wheelchair bound--anything but normal. Lenny Davis has eloquently written about this in Enforcing Normalcy.
The consequences of our failure to teach all children that people, young and old alike, with a disability are equal has profound social and economic consequences. 66% of Americans with a disability are unemployed. A third of people with a disability live at or below the poverty line. Only a small percentage of people with a disability have a college education. An even smaller number, a microscopic percentage, have an advanced degree such as mine. This is a costly failure. It is a failure that leads to social invisibility. We people with a disability live at the margins of social respectability. We were not accepted in schools and we are not accepted in the work force. Our presence is not required or even expected. In this era of draconian budget cuts in education and services for people with disabilities these are grim times. We may be saving money now but I wonder about the social consequences. I wonder how many people with a disability turn their failure to receive an education or a secure a job into self loathing--a personal failure. It is understandable to direct failure inward--I still vividly recall when I was first disabled I was stunned at how differently I was treated. I felt as though I had the plague. I felt as though I was the same person but I sure as hell was not treated as I once was. This caused me to withdraw from others. When I went to college I spent way too much time drinking and smoking pot. I partied hard but I also worked hard at academics--something I was inherently good at. Somehow I knew that education was the only thing that could save me from a life of despair. I was also blessed with outstanding parents who supported and fought right along side me against social injustice. In retrospect these two variables, an outstanding education and supportive parents, are what successful people with a disability have in common. Getting an equal education is very difficult for any person with a disability and good parents are a matter of luck. I was especially lucky--indeed I joke that I hit the parent lottery. But I did have to fight for an education. Sadly, that fight for an education is something people with a disability must still undertake. That fight is different from what I endured. No person is barred from school and told they are a fire hazard. But this does not mean bigotry and exclusion are absent. That fight today entails a lack of equal transportation, socially sanitized and accepted segregation, deep budget cuts as well as resentment "normal" kids somehow are neglected.
The above has been on my mind since i read Jonathan Mooney's wonderful book The Short Bus. This book is filled with delightful stories in a wickedly twisted way. It like a cripple Kerouac's On the Road. I highly recommend this book for it does what few books ever do--make you laugh and think at the same time. How this book made me yearn to travel. As soon as my wound is healed I am going to hit the road. Where i am going, I have no idea. But go I will for travel is akin to a real special education. And if there is one thing I still yearn for it is education.
DHR Exclusive.
Thursday, April 7, 2011
Steamer Industries recently got an old Turner DHR in to be updated and restored.
The bike came into me with a sick paint job but mechanically and geometrically was a bit outdated.
The the linkage and swingarm in needed a good bit of fixing.
I fitted a new linkage, bearings bolts and seals.
I then drilled the swingarm to update the geometry, there were also a few pinch bolts I had to drill out and re-thread in the too.
After all this was done I went around the the whole bike and gave it a full service and set up the suspension for the rider.
After all this the DHR was ready for the hill!
Came in a bit haggard but is now solid!
Geo before BB 14.6" HA 65 deg
Geo after BB 13.65" HA 63 deg
Customer came to collect her toady and was very happy with the result.
Keep 'em tidy!
K-Dub
The bike came into me with a sick paint job but mechanically and geometrically was a bit outdated.
The the linkage and swingarm in needed a good bit of fixing.
I fitted a new linkage, bearings bolts and seals.
I then drilled the swingarm to update the geometry, there were also a few pinch bolts I had to drill out and re-thread in the too.
After all this was done I went around the the whole bike and gave it a full service and set up the suspension for the rider.
After all this the DHR was ready for the hill!
Came in a bit haggard but is now solid!
Geo before BB 14.6" HA 65 deg
Geo after BB 13.65" HA 63 deg
Customer came to collect her toady and was very happy with the result.
Keep 'em tidy!
K-Dub
Wound Care Update
Sunday, April 3, 2011
I have been getting away from giving updates on my wound. The reason for this is simple: I continue to heal. I have been free of the wound vacuum for more than a month and hopefully will never see the damn machine again. I still have wound care come to my house to help change the foam island dressing. I do this myself the days wound care does not come. It is quite awkward to do but I get better each time I do it. I have given up guessing when the wound will be fully healed. It is now very small, smaller than the size of a dime, and superficial. I figure a few more weeks at most and I will be at long last officially healed. What a long arduous process this has been. This has been a road I hoped to never traverse, one I hope to avoid for the rest of my life.
The point of the above is that my posts will and pretty much already have returned to normal programming. I will continue to hammer away at my undivided goal--equal rights for all people with disabilities. That is the one theme that hold each and every post together. It is a quest I will never give up on. It is my fervent hope that the posts I have put up over the last few years will help in some small way counteract what is written in the mainstream media. So, stay tuned for more words from this bad cripple.
The point of the above is that my posts will and pretty much already have returned to normal programming. I will continue to hammer away at my undivided goal--equal rights for all people with disabilities. That is the one theme that hold each and every post together. It is a quest I will never give up on. It is my fervent hope that the posts I have put up over the last few years will help in some small way counteract what is written in the mainstream media. So, stay tuned for more words from this bad cripple.
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