I have been thinking a lot about college. My son is working hard on his applications and the dreaded but all important personal essay. My son's experience has prompted me to be retrospective. Why did I choose Hofsta University where I received my BA? What reasons did I have, good and bad, that led me to go to a school on Long Long Island? Well, truth be told, I chose Hofstra because the male female ratio was in my favor, the university was not too far from home, and close to the city in case I got seriously ill. In retrospect, my under graduate experience was everything it should have been. I had a great time, drank way too much, and learned how to navigate the world on my own. I also emerged well prepared for the rigors of graduate school. I can only hope my son learns as much as I did and has an equally positive experience (minus the heavy drinking).
Aside from being retrospective, my son's experience choosing a college has left me very cranky about the American university system in terms of access for students with a disability and the application process. My decision to attend Hofstra was arbitrary. No single factor aside from geography and the number of female students I observed when I visited really swayed me. My son is no different. In his estimation every college he has visited is cool. Each college he visited has a strength and weakness but only two stuck out. What has changed dramatically is parental involvement. College tours are designed with parents and the prospective student in mind but students are clearly of secondary importance. Some colleges have slick presentations but all are designed to appeal to parents. Parents are major players and every college I visited with my son assumed I would go on the tour and attend information sessions. What this means is that prospective students ask no questions and the information provided is largely useless. By useless I mean the things prospective students really want to know is never discussed. This is a direct contrast to what took place when I looked at colleges. My parents drove me to a college, dropped me off at the admissions office, and picked me up at the end of the day. They were not involved at all and did not take a tour much less get out of the car. The most involved they were was the day they bought me a giant paper back book entitled something like A Guide to American Colleges and Universities. It was my job to pick out a few schools and tell them about the one or two I would visit. I am sure there is a happy medium between my experience and the over involvement of parents today. But what sticks out is that students like my son are bombarded with information that is not geared to them. I find this understandable but bothersome. College is a business and I cannot get too mad when they are appealing to the people that will be paying the bills. I just wish students and student questions were the priority. Afterall, it is my son not me that will be attending college.
While on tours of various colleges I also got an opportunity to see what passed for wheelchair access. I vowed to never utter a single question about access for students with a disability in my sons presence. I did however listen to what passed for politically correct language in terms of welcoming students. All tour guides made a point of stating there were gay, lesbian, and transgender groups on campus. Racial minorities were similarly mentioned as ensconced on campus. Various clubs, sports, academic societies were mentioned as well. Travel abroad was always discussed and appeared to be a great way to spend the summer and get credit at the same time. Green technology was the rage--not a single college missed the opportunity to discuss how eco-friendly they were. What I am building up to here is that only once did the issue of disability come up--this was in a power point display that listed campus wide services available to students that preceded a talk by an admissions officer. Of the colleges my son visited, most were reasonably accessible. But not once did I see a prospective or current student with a visible disability. I saw no wheelchair lifts on buses, no brochures about disability services offered, or even a campus map that listed accessible routes. I thought to myself where are my peers? Where are the future business men and women, professors, and white collar professionals with a disability? No percentage or estimate of students with a disability could be found in any catalogue or even on extensive websites for the schools my son is interested in attending. I ended up feeling very alone, as in totally isolated and wanted to know where students and parents with a disability were. I saw every ethnic minority I could think of. I saw people with a diverse range of body types. Yet not once did I see a paralyzed student or parent. No wonder I feel isolated. I am isolated. I am alone. Sure others parents and students with a disability exist but we are the exception, the rare species spotted once in a while and carefully scrutinized and studied.
As a direct result of my son's experience I have spent much time thinking about the all important why. Why did I see no students or parents with a disability? It seems to me that this lack of visibility--near invisibility--is due to social obstacles placed in front of all people with a disability. Sure the last 40 years of law making have been designed to empower people with a disability. But laws do not end bigotry we people with a disability routinely experience. In much the same way, the great civil rights legislation of the 1960s did not put an end to racial bigotry. Likewise, women were not liberated by the push for equal rights or the birth control pill. What made a difference in the every day life of black Americans and women was the social expectation of equality. No such expectation for people with a disability exists in American education--that goes for secondary schools and colleges. Students with a disability, if present at all, are considered special. And special in education is frowned upon. Special means different, special translates into an unfair advantage, special means extra and needless work for teachers and professors, special means spending a lot of money on a few students. I get the message as do students with a disability. We are not wanted, our mere presence a costly burden that must me made because it is the law. This line of thought infuriates me. We are talking about the key to success--a basic education. To me, basic education means a college degree. If my experience this summer with my son is any indication, I will be alone for the foreseeable future. This must change. We must change the mind set that is destroying and has destroyed the lives of countless people with a disability. As the 1960s slogan proclaimed give peace a chance and in this case give people with a disability a chance. A bad pun indeed but one that is apt.
Tuesday, October 13, 2009
Tuesday, October 6, 2009
The Ashley Treatment Yet Again
Readers that have followed this blog for a while know that I continue to keep up to date on the Ashley Treatment. I read as much as I can and try to keep abreast of any new developments. I do this because I remain deeply troubled by the larger implications of the Ashley Treatment, now referred to as growth attenuation by doctors. The change from the simple and easy to google Ashley Treatment to growth attenuation is not a matter of semantics. To me, this is a way for those that have relentlessly pushed this so-called treatment as a viable option to avoid publicity. Frankly, given the hysterical reaction by the mainstream media to the Ashley Treatment I cannot blame them too much. Nothing good came from the media's pack mentality when the story broke in 2007. The doctors that advocated for the Ashley Treatment came across as arrogant and stuck their proverbial foot in their mouths multiple times. Disability activists were unable to articulate why the Ashley Treatment was so dangerous and were quickly type cast as stereotypically angry. Utterly lost in the furor was any nuanced discussion. Sadly, not much has changed and I remain distressed because I have just finished reading an article scheduled to appear in the American Journal of Bioethics entitled "Ashley Revisited: A Response to Critics" by Douglas Diekema and Norman Fost.
Let me be clear: the essay by Diekema and Fost is dreadful--unworthy of publication in any respected academic journal. I have submitted an abstract for an Open Peer Commentary in AJOB that is ever so polite. I gritted my teeth when submitting the abstract but doubt I will be asked to submit a commentary between 500 and 1500 words. My words here will not be nice or polite. For I know the pesky words of this and any other bad cripple are surely unwanted. The supposed aim of Diekema and Fost was to catalogue critical commentary "for the purpose of evaluating them. In doing so, we hope to facilitate a substantive discussion on the issues raised by the Ashley case that goes beyond assertions, over simplifications, opinion and emotion." Diekema and Fost identify 25 objections and break them up into different groups. This sounds great but the results are less than satisfactory to say the least. The authors write like petulant children angry with their parents for sending them to bed without dessert. How dare people object to the Ashley Treatment! We listened to the pleas emanating from the lips of Ashley's loving parents and devised a treatment for her benefit. No critics have formulated an argument that will deter us from helping Ashley and other children like her. This intervention must proceed because we know this is the one and only answer. This sort of knowledge, so certain, so sure, is not possible and if assumed to be true down rights dangerous. If you doubt me think Eugenics in this country, an approach approved by none other than the Supreme Court.
I find the authors obvious outrage and approach to critics ironic in that they have assembled many different phrases from a host of publications that are devoid of substance. Any and all criticism is dismissed and is based on an emotional argument, rhetoric, distortion, confusion, or politics. Take your pick critics are wrong, wrong, wrong. This is not scholarship but rather an effort to silence the overwhelming number of people inside and outside of medicine that object to the Ashley Treatment. To accomplish this the authors have assembled a long list of objections that appear to be power point driven or a collection of notes. Slide one, objection one reduced to a single line. Four subsequent points are made in less than a page. If a graduate student submitted this sort of paper to me I would give it a failing grade or tell him/her to write a real paper.
Let me provide one specific example of where the authors went terribly wrong and are misleading. Before I do this I want to note that this example does not concern the authors dismissal of my article published in Counter Punch or the way they reduced what I argued to a single phrase. Under "Objection 19" the authors list "Disability rights activists disagree" with the interventions in the Ashley Case. They authors identify four flaws made by disability activists and dismiss any notion the Ashley Treatment as morally wrong. The authors think disability activists are driven by an ideological argument and that advocacy groups do not in any way represent the parents or best interests of Ashley. Moreover, such argument are made by people with physical or moderate cognitive disabilities and are totally different from Ashley. For some this may pass as reasoned analysis but scratch the surface and profound flaws emerge. The authors write "several disability rights groups" opposed the Ashley Treatment and list five examples. A quick look on line reveals that more than "several" groups opposed the Ashley Treatment. I quickly came up with a list of over 150 disability groups that opposed the Ashley Treatment. This list includes at least one group from every state in America, every Canadian province, and countries such as England, New Zealand, Austria, Australia, Belgium, China, Korea, Norway, Poland and the list goes on and on. Surely one of these groups not to mention the hundreds of people that wrote articles, blogs, and commentaries that were published from a "disability rights" perspective made one or two good points. In short, a disability perspective is dismissed out of hand and the bibliography contains a dearth of source material from such a viewpoint. This is not just faulty reasoning but terrible and misleading scholarship.
What I find most troubling about the article by Diekema and Fost is their arrogance. The paper in question may state they seek to engage the critics of the Ashley Treatment but reality as they present it is something entirely different. There is no willingness to acknowledge much less negotiate differences of opinion. The Ashley Treatment is a viable treatment option. No argument presented can sway the authors from their beliefs. The single minded determination they display is, I hope, out of the norm. It certainly does not reflect my experience with the medical establishment. I have found most doctors that propose controversial treatment options to be critically attuned to any and all objections. And this what strikes me as so unusual about the Ashley Treatment. Diekema and Fost are not willing to listen to any reasoned objection regardless of where it comes from. They are right and all critics are wrong. Life is not that absolute and certainly no medical treatment as controversial as the Ashley Treatment lends itself to a black and white view of the world.
Let me be clear: the essay by Diekema and Fost is dreadful--unworthy of publication in any respected academic journal. I have submitted an abstract for an Open Peer Commentary in AJOB that is ever so polite. I gritted my teeth when submitting the abstract but doubt I will be asked to submit a commentary between 500 and 1500 words. My words here will not be nice or polite. For I know the pesky words of this and any other bad cripple are surely unwanted. The supposed aim of Diekema and Fost was to catalogue critical commentary "for the purpose of evaluating them. In doing so, we hope to facilitate a substantive discussion on the issues raised by the Ashley case that goes beyond assertions, over simplifications, opinion and emotion." Diekema and Fost identify 25 objections and break them up into different groups. This sounds great but the results are less than satisfactory to say the least. The authors write like petulant children angry with their parents for sending them to bed without dessert. How dare people object to the Ashley Treatment! We listened to the pleas emanating from the lips of Ashley's loving parents and devised a treatment for her benefit. No critics have formulated an argument that will deter us from helping Ashley and other children like her. This intervention must proceed because we know this is the one and only answer. This sort of knowledge, so certain, so sure, is not possible and if assumed to be true down rights dangerous. If you doubt me think Eugenics in this country, an approach approved by none other than the Supreme Court.
I find the authors obvious outrage and approach to critics ironic in that they have assembled many different phrases from a host of publications that are devoid of substance. Any and all criticism is dismissed and is based on an emotional argument, rhetoric, distortion, confusion, or politics. Take your pick critics are wrong, wrong, wrong. This is not scholarship but rather an effort to silence the overwhelming number of people inside and outside of medicine that object to the Ashley Treatment. To accomplish this the authors have assembled a long list of objections that appear to be power point driven or a collection of notes. Slide one, objection one reduced to a single line. Four subsequent points are made in less than a page. If a graduate student submitted this sort of paper to me I would give it a failing grade or tell him/her to write a real paper.
Let me provide one specific example of where the authors went terribly wrong and are misleading. Before I do this I want to note that this example does not concern the authors dismissal of my article published in Counter Punch or the way they reduced what I argued to a single phrase. Under "Objection 19" the authors list "Disability rights activists disagree" with the interventions in the Ashley Case. They authors identify four flaws made by disability activists and dismiss any notion the Ashley Treatment as morally wrong. The authors think disability activists are driven by an ideological argument and that advocacy groups do not in any way represent the parents or best interests of Ashley. Moreover, such argument are made by people with physical or moderate cognitive disabilities and are totally different from Ashley. For some this may pass as reasoned analysis but scratch the surface and profound flaws emerge. The authors write "several disability rights groups" opposed the Ashley Treatment and list five examples. A quick look on line reveals that more than "several" groups opposed the Ashley Treatment. I quickly came up with a list of over 150 disability groups that opposed the Ashley Treatment. This list includes at least one group from every state in America, every Canadian province, and countries such as England, New Zealand, Austria, Australia, Belgium, China, Korea, Norway, Poland and the list goes on and on. Surely one of these groups not to mention the hundreds of people that wrote articles, blogs, and commentaries that were published from a "disability rights" perspective made one or two good points. In short, a disability perspective is dismissed out of hand and the bibliography contains a dearth of source material from such a viewpoint. This is not just faulty reasoning but terrible and misleading scholarship.
What I find most troubling about the article by Diekema and Fost is their arrogance. The paper in question may state they seek to engage the critics of the Ashley Treatment but reality as they present it is something entirely different. There is no willingness to acknowledge much less negotiate differences of opinion. The Ashley Treatment is a viable treatment option. No argument presented can sway the authors from their beliefs. The single minded determination they display is, I hope, out of the norm. It certainly does not reflect my experience with the medical establishment. I have found most doctors that propose controversial treatment options to be critically attuned to any and all objections. And this what strikes me as so unusual about the Ashley Treatment. Diekema and Fost are not willing to listen to any reasoned objection regardless of where it comes from. They are right and all critics are wrong. Life is not that absolute and certainly no medical treatment as controversial as the Ashley Treatment lends itself to a black and white view of the world.
Monday, October 5, 2009
People with a Disability as Tragic Victim
Over the weekend, October 4, 2009 to be precise, the New York Times had a long article in the health section about the safety of chop meat and by extension hamburgers. The story, "Trail of E. Coli Shows Flaws in Inspection of Ground Beef" by Michael Moss discussed what many already know: ground meat safety is no sure thing. E. Coli outbreaks occur with regularity (16 in the last three years) and what we know as ground beef is not simply chunks of meat run through a grinder. I for one do not eat hamburgers and only use ground beef when it is cooked for extended periods of time (think tomato sauce or chili). What was of interest to me about the story regarding meat safety was the picture and nine minute video that featured Stephanie Smith, a 22 year old dance instructor. In 2007 Ms. Smith ate a hamburger her mother cooked and got a severe form of E. Coli. Ms. Smith was in a coma for weeks and almost died. The NYT dramatizes Ms. Smith's experience and uses her as a worst case scenario. While the text is bad and filled with lines such as "The affliction had ravaged her nervous system and left her paralyzed", the accompanying video is far worse. The video, provocatively titled, "The Burger that Shattered Her Life", makes it clear life with a disability is the worst possible fate. People must not only fear hamburgers but fear disability even more. Of the eleven people tied to the E. Coli outbreak Ms. Smith was the most seriously affected.
The story of Ms. Smith's hamburger is used by the NYT to sensationalize the risks associated with eating ground beef. The video in question is offensive. I was stunned when I watched it over coffee Saturday morning and have waited two days before writing a word because I was so outraged. The video begins with melodramatic music and Ms. Smith speaking. The voice over states she ate a home cooked burger and ten days later was in the hospital. She "emerged nine weeks later paralyzed and brain damaged". With soaring music, images of a dancer and Ms. Smith at the super market the message sent is unmistakable: poor Ms. Smith, her life is ruined by eating a hamburger. Sitting in a wheelchair she is depicted as an object of pity. The photos of her are shot from a low angle and depict her in a grocery aisle and at the check out center with only her head visible. The imagery is purposeful and intended to dehumanize. With this introduction over, most of the video focus on the lack of meat safety and Ms. Smith is used as a bookend for the video (she appears at the beginning and end of the video). When it is obvious the bad guys are private meat companies such as the giant corporate entity known as Cargill that is tied to the out break of E. Coli that affected Ms. Smith she reappears at the end of the video. This last part is what sent me over the edge and is in my estimation grossly biased and beneath the standards of accepted journalism. Just as the voice over ends by blasting Cargill Ms. Smith appears again as she slowly gets out of bed into a wheelchair. The image is meant to prompt an emotional reaction--pity. Pity this poor vibrant young woman that did nothing wrong: she cannot walk, is brain damaged and struggles to get out of bed. By extension the viewer must assume we should pity all those that use a wheelchair and have any sort of disability. Worse yet, is the way Ms. Smith is exploited for she reinforces negative conceptions of disability. She is filmed sitting in her wheelchair tearfully expressing herself: "I have to work at it, get somewhere. I know I will be back to me. I know I will walk again. I know I will dance. I know I will not be walking with a walker. I will be dancing". Oh, please spare me the melodrama! Why is Ms. Smith so miserable and unwilling to accept her life as it currently is? This is as simple to answer as it is complex. Society thinks less of Ms. Smith and has placed social obstacles on top of her disability. Obstacles such as the NYT video in which she is used as an object of pity. When she is finished speaking the voice over cuts in and states "She will most likely spend the rest of her life in a wheelchair according to her doctors". What the voice over is really saying is that Ms. Smith's life is ruined. Using a wheelchair is a fate worse than death. The video cuts back to Ms. Smith in tears. She states "I honest to God think they should be in jail". Pause while she composes herself. "So I hate them and I don't know how they can sleep at night. I ask myself every day, Why me? and Why from a hamburger? This is so unfair". More tears flow as the video ends.
I am outraged. What other person would be depicted in such a manner? Why, no one of course except a person with a disability. Like it or not I am still thought to be a second class citizens by many people including those at the NYT. There is a word for this--ableism. Yet when I use this word no one knows what it means. Most people have an idea of what Jim Crow Laws were thanks to the public school system and the civil rights movement. However, ableism is unknown in spite of the fact the ADA is almost 20 years old. Few people outside the disability community appreciate how damaging and dehumanizing videos such as the one discussed are. People just don't get it. Instead of being outraged I am too often thought to be over sensitive or politically correct. As Mary Johnson wrote in Make Them Go Away just because no one is out to get the handicapped does not make the bigotry we experience acceptable. I have no doubt the NYT did not mean to insult people with a disability. But that is exactly what they have done. Moreover, they have reinforced negatives stereotypes associated with being disabled that are as wrong as they are old. Thus when I go to the supermarket the person that read and viewed the story about Ms. Smith will have learned something: the safety of ground beef is questionable and my life and the life of all those who use a wheelchair is a quasi tragedy. I am not a sentient being but an object of pity. I am miserable and wonder every day why me, oh why oh why must I use my wheelchair. People do not see me for what I am, a human being with a life as rich and rewarding as any other person that gets through the day on two feet.
The story of Ms. Smith's hamburger is used by the NYT to sensationalize the risks associated with eating ground beef. The video in question is offensive. I was stunned when I watched it over coffee Saturday morning and have waited two days before writing a word because I was so outraged. The video begins with melodramatic music and Ms. Smith speaking. The voice over states she ate a home cooked burger and ten days later was in the hospital. She "emerged nine weeks later paralyzed and brain damaged". With soaring music, images of a dancer and Ms. Smith at the super market the message sent is unmistakable: poor Ms. Smith, her life is ruined by eating a hamburger. Sitting in a wheelchair she is depicted as an object of pity. The photos of her are shot from a low angle and depict her in a grocery aisle and at the check out center with only her head visible. The imagery is purposeful and intended to dehumanize. With this introduction over, most of the video focus on the lack of meat safety and Ms. Smith is used as a bookend for the video (she appears at the beginning and end of the video). When it is obvious the bad guys are private meat companies such as the giant corporate entity known as Cargill that is tied to the out break of E. Coli that affected Ms. Smith she reappears at the end of the video. This last part is what sent me over the edge and is in my estimation grossly biased and beneath the standards of accepted journalism. Just as the voice over ends by blasting Cargill Ms. Smith appears again as she slowly gets out of bed into a wheelchair. The image is meant to prompt an emotional reaction--pity. Pity this poor vibrant young woman that did nothing wrong: she cannot walk, is brain damaged and struggles to get out of bed. By extension the viewer must assume we should pity all those that use a wheelchair and have any sort of disability. Worse yet, is the way Ms. Smith is exploited for she reinforces negative conceptions of disability. She is filmed sitting in her wheelchair tearfully expressing herself: "I have to work at it, get somewhere. I know I will be back to me. I know I will walk again. I know I will dance. I know I will not be walking with a walker. I will be dancing". Oh, please spare me the melodrama! Why is Ms. Smith so miserable and unwilling to accept her life as it currently is? This is as simple to answer as it is complex. Society thinks less of Ms. Smith and has placed social obstacles on top of her disability. Obstacles such as the NYT video in which she is used as an object of pity. When she is finished speaking the voice over cuts in and states "She will most likely spend the rest of her life in a wheelchair according to her doctors". What the voice over is really saying is that Ms. Smith's life is ruined. Using a wheelchair is a fate worse than death. The video cuts back to Ms. Smith in tears. She states "I honest to God think they should be in jail". Pause while she composes herself. "So I hate them and I don't know how they can sleep at night. I ask myself every day, Why me? and Why from a hamburger? This is so unfair". More tears flow as the video ends.
I am outraged. What other person would be depicted in such a manner? Why, no one of course except a person with a disability. Like it or not I am still thought to be a second class citizens by many people including those at the NYT. There is a word for this--ableism. Yet when I use this word no one knows what it means. Most people have an idea of what Jim Crow Laws were thanks to the public school system and the civil rights movement. However, ableism is unknown in spite of the fact the ADA is almost 20 years old. Few people outside the disability community appreciate how damaging and dehumanizing videos such as the one discussed are. People just don't get it. Instead of being outraged I am too often thought to be over sensitive or politically correct. As Mary Johnson wrote in Make Them Go Away just because no one is out to get the handicapped does not make the bigotry we experience acceptable. I have no doubt the NYT did not mean to insult people with a disability. But that is exactly what they have done. Moreover, they have reinforced negatives stereotypes associated with being disabled that are as wrong as they are old. Thus when I go to the supermarket the person that read and viewed the story about Ms. Smith will have learned something: the safety of ground beef is questionable and my life and the life of all those who use a wheelchair is a quasi tragedy. I am not a sentient being but an object of pity. I am miserable and wonder every day why me, oh why oh why must I use my wheelchair. People do not see me for what I am, a human being with a life as rich and rewarding as any other person that gets through the day on two feet.
Tuesday, September 29, 2009
Assisted Suicide: That Did Not Take Long
The first legal test of the interim rules on assisted suicide in Britain has already come to light. An 83 year old former GP and assisted suicide advocate, Libby Wilson, was questioned and according to some reports arrested by the police. Dr. Wilson, the founder of FATE, Friends at the End, was questioned by the police in connection with the death of Cari Loder. Ms. Loder, a 48 year old academic, was not terminally ill. She had Multiple Sclerosis. Ms. Loder killed herself using helium gas and a hood she bought on line. According to Dr. Wilson she spoke with Ms. Loder twice and explained how to use the mask and gas she purchased. Loder was dead two days after they spoke and appears to have used a Final Exit suicide guide to end her life. Dr. Wilson was not the only person questioned by police who also spoke to one of Loder's neighbors. However, Dr. Wilson has been frank in stating her opinions about Loder's death. Wilson has been quoted as stating that she gave Loder "final tips" and that her questioning was an "appalling waste of money. The police time and effort to investigate the death of a lady who wanted to die and had good reason to die and I had absolutely nothing to do with the means of how she did it". Exactly why Loder had "good reason" to die is something I and many others would dispute.
This case does not surprise nor does the identity of the victim. Loder was a lecturer at London University's Institute of Education and discovered what was named the "Cari Loder Regime" for MS. This regime combined antidepressants, an amino acid and vitamins. Loder wrote Standing in Sunshine in 1997. In her book she wrote that she was diagnosed with MS at the age of 32 and was on the verge of committing suicide until she discovered the "Cari Loder Regime". It will be very interesting to see how and what Keir Starmer does in light of Loder's death. I sincerely doubt Dr. Wilson will face prosecution based on the interim guidelines thereby paving the way for many more deaths.
This case does not surprise nor does the identity of the victim. Loder was a lecturer at London University's Institute of Education and discovered what was named the "Cari Loder Regime" for MS. This regime combined antidepressants, an amino acid and vitamins. Loder wrote Standing in Sunshine in 1997. In her book she wrote that she was diagnosed with MS at the age of 32 and was on the verge of committing suicide until she discovered the "Cari Loder Regime". It will be very interesting to see how and what Keir Starmer does in light of Loder's death. I sincerely doubt Dr. Wilson will face prosecution based on the interim guidelines thereby paving the way for many more deaths.
Monday, September 28, 2009
Inclusion in Education at What Cost?
Access for people with a disabilities carries a cost. To me cost does not refer to money. Inclusion means equal access and equal rights as in civil rights. One of our most cherished rights is the right to an education. However, the right to a public school education was denied generations of people with a disability. The impact this denial had on the lives of people with a disability was profound and long lasting. We people with a disability have yet to recover from the legacy of exclusion. Without an education, employment was impossible for people with a disability. With no job, a social life and home of one's own was a pipe dream for many Americans with a disability. Today, schools districts across America trumpet inclusion--within reason. And what does "reason" mean? Inclusion is valued as long as it does not cost too much or there are not too many students with a disability present. I know this because I have heard parents and my professorial peers complain bitterly about how schools are "overrun with students with disabilities". Professors complain about the accommodations they are forced to make, particularly for students with learning disabilities who get extra time to take a test and "cannot write in English." Meanwhile parents in the public school complain about the cost involved in educating students with a disability and resent each and every accommodation. I have heard many parents ask why a bus with a lift is needed for a student that uses a wheelchair and suggest hiring a cab to take them to and from school daily would save money. No consideration is given to the legality of such a suggestion or the social stigma attached to arriving to school apart from one's peers.
The cost of inclusion has been on mind since the film, Including Samuel, has been subject of an intense media blitz. The film has been featured on Good Morning America, NPR's All Things Considered, and will be broadcast nationally on PBS. Including Samuel chronicles the life of four students with disabilities including Samuel, a fourth grader with cerebral palsy. Samuel parents make every effort to include Samuel, to make his life as routine as his peers without a disability where they reside in Concord, New Hampshire. What this film does well is reveal that all may support inclusion in theory but the reality children and adults with a disability experience is quite different. Moreover, there is a great deal of resentment in the larger community about the cost involved in providing an education for children with special needs. "Special needs" and the very idea of treating any American, especially a child, as though they are, well, special, is deeply resented. Such treatment goes against the American myth that all people are created equal. Special to Americans is akin to an advantage. I know such children and adults with disabilities are resented because I hear negative comments all the time. Professors often ask me "Why do they even let students with a learning disability into college?" At the local public school I have heard people complain at length about the cost of making a bathroom accessible. They wonder "why students with a disability just go to the nurses office if they need to use the rest room?" In each example "special" treatment is resented in terms of finances involved and accommodations made. This viewpoint is the norm and hence an indication of the great cost and legacy of decades of exclusion. For I have often heard parents remark that "We never had any kids with disabilities when I was a kid. Why can't they got to a special school and use the savings to expand the program for the gifted and talented or sparse athletic budget". This line of logic utterly ignores the law and those parents that fight for their child's right to an education are deemed difficult or worse. Students with a disability are stigmatized because at some level they are aware their presence is not only unwanted but costly. This message is delivered by teachers that do not want them present because a wheelchair for instance takes up too much valuable space in a classroom. Perhaps they are forced to go to the one and only accessible bathroom in say the nurses office which is in an out of the way location. Perhaps they are driven to school daily because the lift on the bus is broken and has not worked in months. Kids are not stupid, they have a sense for things and kids with a disability are acutely aware they are different. They are also aware of when their presence is a problem--like in gym when other kids are active but no adaptive activity is considered.
I know quite a bit about the implications of being unwanted. I went to Catholic school as a child and the nuns made sure that I, "one of God's special children", was treated differently. Thankfully my parents nipped this sort of talk in the bud, as in one day, and sent me to public school. Public school was not much easier as my peers ridiculed my existence and tortured me with taunts of "old ironsides" and "retard". But at least my teachers and school guidance counselor treated me as a sentient being and this what I remember the best. Yet I wonder what would happen to me if I were attending school today. I doubt I would get the same support. In theory and legally I would be supported but the day to day reality would be profoundly different. Would a present day guidance counselor support my right to an equal education or make me feel as though any accommodation was a problem. These are hard times economically, school budgets are being slashed and the people most adversely affected are students with disabilities. They are being adversely affected because their existence is unwanted and as such mirrors larger cultural traits of exclusion that persist. These thoughts depress me in larger part because it is so unnecessary. It is also against the law and that too is a problem--disability rights and civil rights are not connected in the minds of most Americans. If any thought is put into the issue, most assume the ADA solved the problem long ago. I know, as do most people with a disability, that the problem has not been solved. I assure you those little blue wheelchair signs all over the place are as useful as all the broken elevators and garbage laden wheelchair lifts I encounter. What really gets me is that people think that my wheelchair limits my options or affects my ability to think. The real limitations have nothing to do with a person's given physical disability but the education and opportunities denied them by society. This is a lesson many school districts have not yet learned.
The cost of inclusion has been on mind since the film, Including Samuel, has been subject of an intense media blitz. The film has been featured on Good Morning America, NPR's All Things Considered, and will be broadcast nationally on PBS. Including Samuel chronicles the life of four students with disabilities including Samuel, a fourth grader with cerebral palsy. Samuel parents make every effort to include Samuel, to make his life as routine as his peers without a disability where they reside in Concord, New Hampshire. What this film does well is reveal that all may support inclusion in theory but the reality children and adults with a disability experience is quite different. Moreover, there is a great deal of resentment in the larger community about the cost involved in providing an education for children with special needs. "Special needs" and the very idea of treating any American, especially a child, as though they are, well, special, is deeply resented. Such treatment goes against the American myth that all people are created equal. Special to Americans is akin to an advantage. I know such children and adults with disabilities are resented because I hear negative comments all the time. Professors often ask me "Why do they even let students with a learning disability into college?" At the local public school I have heard people complain at length about the cost of making a bathroom accessible. They wonder "why students with a disability just go to the nurses office if they need to use the rest room?" In each example "special" treatment is resented in terms of finances involved and accommodations made. This viewpoint is the norm and hence an indication of the great cost and legacy of decades of exclusion. For I have often heard parents remark that "We never had any kids with disabilities when I was a kid. Why can't they got to a special school and use the savings to expand the program for the gifted and talented or sparse athletic budget". This line of logic utterly ignores the law and those parents that fight for their child's right to an education are deemed difficult or worse. Students with a disability are stigmatized because at some level they are aware their presence is not only unwanted but costly. This message is delivered by teachers that do not want them present because a wheelchair for instance takes up too much valuable space in a classroom. Perhaps they are forced to go to the one and only accessible bathroom in say the nurses office which is in an out of the way location. Perhaps they are driven to school daily because the lift on the bus is broken and has not worked in months. Kids are not stupid, they have a sense for things and kids with a disability are acutely aware they are different. They are also aware of when their presence is a problem--like in gym when other kids are active but no adaptive activity is considered.
I know quite a bit about the implications of being unwanted. I went to Catholic school as a child and the nuns made sure that I, "one of God's special children", was treated differently. Thankfully my parents nipped this sort of talk in the bud, as in one day, and sent me to public school. Public school was not much easier as my peers ridiculed my existence and tortured me with taunts of "old ironsides" and "retard". But at least my teachers and school guidance counselor treated me as a sentient being and this what I remember the best. Yet I wonder what would happen to me if I were attending school today. I doubt I would get the same support. In theory and legally I would be supported but the day to day reality would be profoundly different. Would a present day guidance counselor support my right to an equal education or make me feel as though any accommodation was a problem. These are hard times economically, school budgets are being slashed and the people most adversely affected are students with disabilities. They are being adversely affected because their existence is unwanted and as such mirrors larger cultural traits of exclusion that persist. These thoughts depress me in larger part because it is so unnecessary. It is also against the law and that too is a problem--disability rights and civil rights are not connected in the minds of most Americans. If any thought is put into the issue, most assume the ADA solved the problem long ago. I know, as do most people with a disability, that the problem has not been solved. I assure you those little blue wheelchair signs all over the place are as useful as all the broken elevators and garbage laden wheelchair lifts I encounter. What really gets me is that people think that my wheelchair limits my options or affects my ability to think. The real limitations have nothing to do with a person's given physical disability but the education and opportunities denied them by society. This is a lesson many school districts have not yet learned.
Thursday, September 24, 2009
Governor Paterson's Honesty
I have been severely critical of David Paterson. My critiques are based on his many mistakes but one thing I have admired since he took office is his penchant for honesty. Honest or candid remarks are out of the norm for politicians and Paterson is not an ordinary Governor. When appointed Governor he quickly admitted to a history of drug use and extra marital affairs. His proactive approach caused some controversy but saved his job. In retrospect I cannot help but wonder if he regrets being appointed Governor and holding onto his job in those tenuous first weeks. I do know his career did not work as planned. In a luncheon this week Paterson stated that when he ran as lieutenant governor in 2006 along with Eliot Spitzer for governor he thought then Senator Hilary Clinton would win her efforts to become President. When this happened Paterson thought Governor Spitzer would appoint him to Clinton's vacated senate seat. In Paterson's own words he said "I did not sign up for this. I wanted to be lieutenant governor. I had this grand plan that Hilary Clinton was going to become president. Maybe the governor would appoint me to the senate".
Paterson's candid remarks are of interest because politicians rarely if ever publicly admit to such grand ambitions. It is also interesting to note Paterson's comments were made shortly after it was revealed the Obama administration supposedly does not want him to run for election in 2010. This must be a bitter pill for Paterson to swallow and he stated that he had "never heard of a president asking a sitting governor not to run. I thought it was very unusual and very unfair". Welcome to big time politics Mr. Paterson. While I may not like Paterson's actions since he assumed office, he was could not have come to power at a worse time. In my estimation virtually all of his problems do not stem from his mistakes but rather from a dismal economy and being forced to make exceedingly unpopular budget cuts. Paterson is smart enough to realize this. He stated "If you ever wanted to know the plan or course you could take to become unpopular, be governor of this state starting March 17, 2008. No matter who you are, I guarantee you, no one will like you". These too are exceedingly honest remarks and all too true. I amy not like Paterson's decisions but I do respect his honesty. How often to you get to write that about a politician?
Paterson's candid remarks are of interest because politicians rarely if ever publicly admit to such grand ambitions. It is also interesting to note Paterson's comments were made shortly after it was revealed the Obama administration supposedly does not want him to run for election in 2010. This must be a bitter pill for Paterson to swallow and he stated that he had "never heard of a president asking a sitting governor not to run. I thought it was very unusual and very unfair". Welcome to big time politics Mr. Paterson. While I may not like Paterson's actions since he assumed office, he was could not have come to power at a worse time. In my estimation virtually all of his problems do not stem from his mistakes but rather from a dismal economy and being forced to make exceedingly unpopular budget cuts. Paterson is smart enough to realize this. He stated "If you ever wanted to know the plan or course you could take to become unpopular, be governor of this state starting March 17, 2008. No matter who you are, I guarantee you, no one will like you". These too are exceedingly honest remarks and all too true. I amy not like Paterson's decisions but I do respect his honesty. How often to you get to write that about a politician?
Wednesday, September 23, 2009
Starmer's Interim Guidelines a Slam Dunk for Assisted Suicide
I knew the guidelines released by Keir Starmer would be a victory for advocates of assisted suicide but I had no idea just how lopsided they would be. The new guidelines that go into force today may only be interim guidelines and are subject to debate before a final version is issued next year. However, don't let this technicality fool you nor be swayed by misleading statements by Keir Starmer who maintains "Assisted suicide has been a criminal offense for nearly 50 years and my interim policy does nothing to change that". Mr. Starmer is correct, assisted suicide is still against the law in Britain but if one actually commits this crime the odds of being prosecuted are non existent. Again, don't be misled by statement such as this: "There are no guarantees against prosecution and it is my job to ensure that the most vulnerable people are protected while at the same time giving enough information to those people like Mrs. Purdy who want to be able to make informed decisions about what actions they may choose". What a relief, Starmer is concerned about protecting the most vulnerable. Well, to all those vulnerable people out there I have a word of advise: watch out because your relatives and loved ones can kill you without fear of prosecution. In the words of Starmer: "We are proud of the way we temper justice with mercy. The decision not to prosecute provides essential flexibility to prosecutors ... the critical question I have considered is: what are the circumstances in which it is or is not in the public interest to prosecute a person against whom there is enough evidence to support the criminal offence of assisted suicide?"
The above begs the question who can commit suicide with assistance? People that assisted a suicide not likely to face charges include the following:
A victim that had a clear, settled and informed desire to commit suicide whose views were unequivocal.
A victim had a terminal illness, a severe and incurable physical disability or severe degenerative condition from which there was no possibility of recovery.
The victim had long-term care based needs with a wife, husband, partner, close relative or personal friend.
The victim was given minor assistance or influence.
Under these guidelines anyone in my family can "help" me die. I do indeed have a severe disability and there is no hope my paralysis will ever be cured. Thus the guidelines will permit my family to use Starmer's words act with "compassion". Compassion! My idea of compassion does not include assisted suicide. My idea of compassion does not include assisting people with "severe and incurable" disabilities kill themselves. My idea of compassion does not include hastening the death of those with severe degenerative conditions. My idea of compassion does not include killing those who are terminally ill. My idea of compassion does not include killing those I care for who may have a condition like Alzheimer's Disease. Starmer believes he is acting with compassion but I think his guidelines are inherently dangerous and grossly subjective. Rather than clarify the legality of assisted suicide he has opened the door for supposedly well meaning people to kill vulnerable people. And who comes to mind here? Daniel James' parents. Under Starmer's guidelines they would be considered compassionate people and free from prosecution. Given this, I am worried about a class of people that are not valued--people with a host of different disabilities. People like Debbie Purdy. People like me. People that experience a life altering disability. What will become of these people in a country that has instituted guidelines where assisted suicide is illegal but no one is prosecuted? Let me provide one example in which those that may mean well will in fact encourage another human being to needlessly end their life. Imagine this scenario: a young man has been in a car accident. He is from a working class background with little education and modest goals. He is an avid soccer player and self professed ladies man. He is told by his doctor that his spinal cord has been severed. He is paralyzed from the 8th cervical level down. He will never walk again, has no sensation throughout his body, and he has limited use of his hands. Sex is no longer possible. He will be "wheelchair bound", unable to transfer independently and be dependent upon personal care attendants for the rest of his life. He will be sent to a rehabilitation hospital when medically stable. Given the harsh reality described in an overwhelming negative fashion, this young man might decide life is not worth living. His family, like Daniel James' parents, may agree and help him end his life. No person will be prosecuted and no crime will have been committed. To me this is not compassion but a legal form of murder.
I know a good bit about compassion and vulnerability. I learned about this the hard way--I was vulnerable, i.e. morbidly sick as a child, and my parents showed great compassion caring for me. I learned some very hard lessons at a young age and was taught to never doubt my self worth or ability. I vividly recall when I was told I could not walk again my parents cried with me and whenever I started to doubt myself they would hiss with a vengeance: "Your legs may not work but the most important part of your body is perfectly intact, your brain, and you better start using it." The compassion and belief they showed in me was a force unto itself at a time when I was most vulnerable. Overtime I found my groove, realized that my disability was more of a social problem than an individual impediment to what I valued and wanted to achieve in life. Fast forward 30 years and I am a tax payer, father, teacher, writer, and lead a life that is as rich and rewarding as my neighbors all of whom walk. I will never forget how lucky I am because at the most vulnerable point in life received nothing more and nothing less than total support from my parents. In retrospect I know I could have been seduced via a perverse form of compassion to end my life. I could have been like Daniel James, dead within a year of my injury. This is exactly why the Daniel James case is so disturbing and why the guidelines set forth today by Starmer are down right dangerous. I have no doubt the elderly, terminally ill, or those with a severe disability will be encouraged to die. This will not be done with malicious intent but the end result will be death, needless death. Of course the words used will be spoken with the utmost compassion that I sincerely hope will never emerge from the mouths of those that love me.
The above begs the question who can commit suicide with assistance? People that assisted a suicide not likely to face charges include the following:
A victim that had a clear, settled and informed desire to commit suicide whose views were unequivocal.
A victim had a terminal illness, a severe and incurable physical disability or severe degenerative condition from which there was no possibility of recovery.
The victim had long-term care based needs with a wife, husband, partner, close relative or personal friend.
The victim was given minor assistance or influence.
Under these guidelines anyone in my family can "help" me die. I do indeed have a severe disability and there is no hope my paralysis will ever be cured. Thus the guidelines will permit my family to use Starmer's words act with "compassion". Compassion! My idea of compassion does not include assisted suicide. My idea of compassion does not include assisting people with "severe and incurable" disabilities kill themselves. My idea of compassion does not include hastening the death of those with severe degenerative conditions. My idea of compassion does not include killing those who are terminally ill. My idea of compassion does not include killing those I care for who may have a condition like Alzheimer's Disease. Starmer believes he is acting with compassion but I think his guidelines are inherently dangerous and grossly subjective. Rather than clarify the legality of assisted suicide he has opened the door for supposedly well meaning people to kill vulnerable people. And who comes to mind here? Daniel James' parents. Under Starmer's guidelines they would be considered compassionate people and free from prosecution. Given this, I am worried about a class of people that are not valued--people with a host of different disabilities. People like Debbie Purdy. People like me. People that experience a life altering disability. What will become of these people in a country that has instituted guidelines where assisted suicide is illegal but no one is prosecuted? Let me provide one example in which those that may mean well will in fact encourage another human being to needlessly end their life. Imagine this scenario: a young man has been in a car accident. He is from a working class background with little education and modest goals. He is an avid soccer player and self professed ladies man. He is told by his doctor that his spinal cord has been severed. He is paralyzed from the 8th cervical level down. He will never walk again, has no sensation throughout his body, and he has limited use of his hands. Sex is no longer possible. He will be "wheelchair bound", unable to transfer independently and be dependent upon personal care attendants for the rest of his life. He will be sent to a rehabilitation hospital when medically stable. Given the harsh reality described in an overwhelming negative fashion, this young man might decide life is not worth living. His family, like Daniel James' parents, may agree and help him end his life. No person will be prosecuted and no crime will have been committed. To me this is not compassion but a legal form of murder.
I know a good bit about compassion and vulnerability. I learned about this the hard way--I was vulnerable, i.e. morbidly sick as a child, and my parents showed great compassion caring for me. I learned some very hard lessons at a young age and was taught to never doubt my self worth or ability. I vividly recall when I was told I could not walk again my parents cried with me and whenever I started to doubt myself they would hiss with a vengeance: "Your legs may not work but the most important part of your body is perfectly intact, your brain, and you better start using it." The compassion and belief they showed in me was a force unto itself at a time when I was most vulnerable. Overtime I found my groove, realized that my disability was more of a social problem than an individual impediment to what I valued and wanted to achieve in life. Fast forward 30 years and I am a tax payer, father, teacher, writer, and lead a life that is as rich and rewarding as my neighbors all of whom walk. I will never forget how lucky I am because at the most vulnerable point in life received nothing more and nothing less than total support from my parents. In retrospect I know I could have been seduced via a perverse form of compassion to end my life. I could have been like Daniel James, dead within a year of my injury. This is exactly why the Daniel James case is so disturbing and why the guidelines set forth today by Starmer are down right dangerous. I have no doubt the elderly, terminally ill, or those with a severe disability will be encouraged to die. This will not be done with malicious intent but the end result will be death, needless death. Of course the words used will be spoken with the utmost compassion that I sincerely hope will never emerge from the mouths of those that love me.
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