Solidarity. Solidarity is something people with a disability lack. We people with a disability lack solidarity among ourselves. People with a disability have little or no support from the general population. Worse yet, those unfamiliar with disability too often think disability is about a medical condition or physical deficit alone. Rarely if ever does the average citizen connect disability rights and civil rights as one in the same. Thus when I state there is no difference between myself and all other people with a disability I am looked at as though I have two heads. Puzzlement is compounded when I maintain there is no difference between myself, a middle aged man with a PhD from Ashley X who is profoundly disabled physically and cognitively. I am often asked why I hold such a "radical viewpoint". My views are steeped in not just disability identity but a thorough understanding of past abuses. Think here of Eugenics, Euthanasia of people with disabilities, forced institutionalization, ugly laws at the turn of the century etc. These travesties of justice have been on my mind ever since I read a long and frightening article by Christine Ryan (Revisiting the Legal Standards that Govern Requests to Sterilize Profoundly Incompetent Children: In Light of the Ashley Treatment, Is a New Standard Appropriate"). Ryan's article is hard to read for a layman and I am not by any stretch of the imagination a legal scholar. In fact Ryan's article reminds me of a Popular Mechanics article circa 1945. There is an interesting introduction, a long highly technical body of the article, and a pithy conclusion with long lasting implications. The conclusion Ryan reached gave my crippled body the chills. She wrote:
The Constitution provides that no state shall “deprive any person of life, liberty, or property, without due process of law.” Who qualifies as a “person” has generated much debate, especially in the context of the profoundly disabled. Persons are entitled to full moral rights and legal status, while nonpersons are not. Depending on the definition of personhood, some profoundly incompetent individuals may not exhibit the necessary characteristics. (pp. 295-6)
Yikes, how many people can look at another human being and believe they are a non-person? This is what a Canadian mom at Life with a Severely Disabled Child questioned on her blog. This observation made me think long and hard about the legal aspects of the Ashley Treatment. In thinking back at what Ashley's parents wrote I recalled that they were required to obtain legal advice to insure the hysterectomy complied with Washington State law. The parents consulted Larry Jones, a Seattle based lawyer with experience advocating for parents of children with developmental disabilities. It has been noted Jones was inspired to enter into this specialization because he had a daughter with severe disabilities. In Jones' legal opinion a court order was not required because sterilization of Ashley was not the sole or primary purpose of the Ashley Treatment. Relying on this advice, the hospital and doctors went ahead with the surgery on Ashley.
In retrospect I simply concluded the parents got bad or at least incorrect legal advise. Lawyers are human, the law subject to a myriad of interpretations and I moved on and did not give the issue much thought--or at least until Ryan tried to describe "incompetent" people as "non-persons". This inspired me to look at the case law upon which it is illegal to sterilize people in the state of Washington. Washington case law on sterlization stems back to In re Guardianship of Hayes circa 1991. While the cognitive ability of Ashley and in the case law are different, the conclusions reached by the court are clear cut. The Hayes court described the way in which sterilization petitions must proceed: Here I quote from an article by Jillian Kornblatt from this year entitled "The Ashley Treatment: The Current Legal Framework Protects the Wrong Rights":
The decision must be made in a superior court proceeding in which, using a clear, cogent, and convincing standard, the court finds that: (1) a disinterested guardian ad litem represents the incompetent individual’s interests; (2) the court receives independent medical, psychological, and social evaluations; (3) the court hears and considers the individual’s views as much as
possible; (4) the individual is incapable of making her own decision about sterilization and is unlikely to be able to in the
foreseeable future; (5) the individual has a need for contraception, including findings that the individual is
physically capable of procreation, likely to engage in sexual activity that is likely to lead to pregnancy in the near future,
and is permanently incapable of caring for a child, even with reasonable assistance; and (6) that there are no alternatives to
sterilization, other contraceptive measures have proved unworkable, the proposed sterilization is the least invasive
option, a reversible or “less drastic” option will not be available soon, and there is not an impending advance in the treatment
of the individual’s disability.
Based on my reading of Hayes it seems obvious that Ashley's parents would not have been able to meet the above requirements given the bias against sterilization. Surely some criteria could have been met but certainly not all as required in points one through six quoted above. Again, I am not a legal scholar but it seems that common sense dictates that a court order was required. However, none was sought and I cannot help but wonder why. Did Jones know the court would have ruled against Ashley parents? Could he have been willing to take the blame after the fact? Jones has a daughter with severe disabilities and is possibly biased. Why did the doctors and hospital accept without question the opinion of a single lawyer? Given the extreme, irreversible and controversial nature of the procedures involved I would think more than one lawyer needed to be consulted. To me, this gets to the heart of the cultural issues involved. Did Ashley doctors, parents, and ethics committee all consider Ashley so different she was not considered to be fully human? I am sure no one articulated this but was this a hidden or unconsciously accepted viewpoint? Was Ashley so different, so impaired cognitively that she did not share the same rights as other children? No one would consider the Ashley Treatment a viable option for a "normal" child. If this is the case what does it say about the way we view children like Ashley and by extension adults like me with a physical disability? History shows us people with a disability have been subjected to abuses of all types. That history is replete with physical violations and civil rights abuses that are appalling. And this exactly why the Ashley Treatment, renamed in recent years as growth attenuation is nothing short of dangerous. In fact it reminded me of the olden days of rehab when I was paralyzed 30 years ago. It was assumed back then high level quads had no quality of life and were often permitted to die or as doctors put it let nature take its course. With the Ashley Treatment we have inverse reasoning. For Ashley nature, that is her body, is the enemy and what could be worse than an adult female with profound cognitive and physical disabilities. Well in this day and age where all sorts of body modification is possible doctors have the power and technology to change the human body and rendered Ashley small. Just because this is possible does not make it right or legally acceptable. There is no question Ashley was illegally sterilized but that is a small part of the larger cultural discourse, one that has implications to all people with a disability. People like Ashley, me and all those in-between.
Monday, October 26, 2009
Saturday, October 24, 2009
What's Going On at Newsweek
In the last month two excellent articles have been published by Newsweek. Yes, Newsweek, a classic example of the venerable print media that is dying a slow death has published two excellent articles that were disability related. The first article published last month on September 23 was entitled "Redefining Cure", the second was published yesterday, October 23 and entitled "Blind Spot". The article, "Redefining Cure", on cure for spinal cord injury was not your archetypical story, a.k.a. a Christopher Reeve diatribe for stem cell research. Alan T. Brown, a long time advocate for a cure and disability rights effectively pointed out we need to redefine our idea of what a cure for spinal cord injury entails. Super Bowl commercials of Reeve walking again and pity ploys are not what Brown has in mind. Brown rails against the cost of living with a spinal cord injury and focuses on the lofty goal of cure and advocacy. These two goals are not mutually exclusive, fact that eluded Reeve his entire post disability life. What amazed me was that Brown was able to get Newsweek to write about spinal cord injury, cure, and advocacy with nuance and understanding. This is something the mainstream media has traditionally been unable or unwilling to do.
The second article in Newsweek, "Blind Spot", raises a subtle and fascinating point: what does accessible mean for museums. Since 2008 a Justice Department ruling has forced museums to grapple what accessibility means. Everyone knows (or at least I hope so) that ramps are required by law and have been since the ADA was passed. But in the words of Nina Levent, executive director of New York's Education for the Blind, "The issue is, do people come to museums to ride elevators and use bathrooms, or do they come to have a meaningful social and aesthetic experience". Wow, this was followed a few paragraphs later by "Following the letter rather than the spirit of the law is a problem that some people think has plagued the ADA from the start". I could not agree more with both of these statements but it is nothing less than a shock to read them in the pages of Newsweek. Where I disagree with the article "Blind Spot" is that the author thinks most museums are doing more than the bare minimum. This is simply not the case at museums I frequent like the American Museum of Natural History and the Metropolitan Museum of Art among others in New York City. Bathrooms in staff areas are utterly absent at both institutions. A wheelchair lift on the fourth floor of the American Museum of Natural History in the dinosaur area has been broken for years. More generally, much print information throught both museums cannot be seen from a wheelchair and services for the blind are severely limited. Over the years I have pointed out many problems in the most polite way possible. Not once has the lack of access been corrected. Museum off site tours are often closed to people with a disability and no suggestions are forthcoming about comparable experiences. Newsweek even hints at my criticism noting that "we're not there yet" in terms of equal access. No we are indeed not there yet but if more articles like the two Newsweek published are printed and widely read access for all will come far sooner than I hoped for.
The second article in Newsweek, "Blind Spot", raises a subtle and fascinating point: what does accessible mean for museums. Since 2008 a Justice Department ruling has forced museums to grapple what accessibility means. Everyone knows (or at least I hope so) that ramps are required by law and have been since the ADA was passed. But in the words of Nina Levent, executive director of New York's Education for the Blind, "The issue is, do people come to museums to ride elevators and use bathrooms, or do they come to have a meaningful social and aesthetic experience". Wow, this was followed a few paragraphs later by "Following the letter rather than the spirit of the law is a problem that some people think has plagued the ADA from the start". I could not agree more with both of these statements but it is nothing less than a shock to read them in the pages of Newsweek. Where I disagree with the article "Blind Spot" is that the author thinks most museums are doing more than the bare minimum. This is simply not the case at museums I frequent like the American Museum of Natural History and the Metropolitan Museum of Art among others in New York City. Bathrooms in staff areas are utterly absent at both institutions. A wheelchair lift on the fourth floor of the American Museum of Natural History in the dinosaur area has been broken for years. More generally, much print information throught both museums cannot be seen from a wheelchair and services for the blind are severely limited. Over the years I have pointed out many problems in the most polite way possible. Not once has the lack of access been corrected. Museum off site tours are often closed to people with a disability and no suggestions are forthcoming about comparable experiences. Newsweek even hints at my criticism noting that "we're not there yet" in terms of equal access. No we are indeed not there yet but if more articles like the two Newsweek published are printed and widely read access for all will come far sooner than I hoped for.
Tuesday, October 20, 2009
Medical Marijuana and Assisted Suicide
Lawyers love precedent and a new and potentially dangerous precedent has been set. Yesterday the Justice Department released a far reaching directive. In the fourteen states that make allowances for the use of medical marijuana federal prosecutors will not prosecute patients and distributors that are in clear and unambiguous compliance with state laws. This new stance on the use of medical marijuana makes sense. Surely people with a demonstrated medical need should be permitted to use marijuana. Clinical studies have proved that the use of marijuana is useful treating the symptoms for a number of medical conditions. More generally, why marijuana is illegal is a mystery to me. Marijuana is part of American culture as much as alcohol use. I don't see anyone suggesting beer should be made illegal. I for one one would like to see marijuana legalized and taxed as heavily as alcohol and cigarettes. But this post is less about marijuana use than it is about politics and the law.
The Justice Department directive is a political statement by the Obama administration--one that cuts in different directions. This decision is the latest in a string of decisions designed to reverse the Bush conservative agenda. As expected, former Bush administrators are not happy. For instance, Lamar Smith of Texas believes the new position on medical marijuana will weaken drug enforcement. Oh, please! Has Mr. Smith been to a college campus recently where the use of marijuana is as common as drinking beer and has been for almost 40 years. Has Mr. Smith been to a high-school recently where marijuana use is equally common. What is of interest beyond archetypical comments such as those that come from Mr. Smith or at the other end of the spectrum the American Civil Liberties Union is that the medical use of marijuana crosses ideological lines. Liberals are delighted medical marijuana use has become easier and patients less likely to be prosecuted. Conservatives, while unhappy about medical marijuana, are delighted that the Obama administration could be perceived as taking a states rights approach. Conservatives love deferring to a state's rights stance.
The states right stance is why I am worried about the larger implications of the Justice Department directive on marijuana use. The Justice Department has provided guidelines and given specific examples of under what circumstances people will be prosecuted. This sounds very close to what was just decided in Britain by the Crown Protective Service with regard to assisted
suicide. When I combine this with assisted suicide as it is being debated by the court in Montana a precedent has been set. While the law may state one thing, prosecution is not likely. In the case of medical marijuana its use has been proven successful in cities like Seattle. Thus it is no surprise that Obama listened to Richard Gil Kerlikoske, former police chief of Seattle now a top drug advisor in the administration. Since Obama has a penchant for making decisions that are designed to please different constituencies could a case be made to let states decide the legality of assisted suicide. This seems to be the growing trend. The medical use of marijuana has popular support nationwide and in some states assisted suicide not only has popular support but has been made legal. Could the legalization of assisted suicide in Washington and Oregon yield the same results that the legalization of medical marijuana has had. In 1996 California was the first state to make the use of medical marijuana legal. Today, fourteen states have passed similar laws. I hate to be alarmist but it seems to me that at first glance most think yes, assisted makes sense. If we can euthanasia a dog why can't we end a person's suffering at the end of their life as well. This is a great sound bite but scratch the surface of the assisted suicide debate and a very different reality emerges. Those that take advantage of assisted suicide are often not terminally ill. Think Daniel James who I have written about many times. While I may value my life, I know others do not. I am not alone. Far too many Peter Singer's of the world are willing to end the the lives of those that are perceived to lack value. Assisted suicide is a step toward eliminating, killing, those we do not value.
The Justice Department directive is a political statement by the Obama administration--one that cuts in different directions. This decision is the latest in a string of decisions designed to reverse the Bush conservative agenda. As expected, former Bush administrators are not happy. For instance, Lamar Smith of Texas believes the new position on medical marijuana will weaken drug enforcement. Oh, please! Has Mr. Smith been to a college campus recently where the use of marijuana is as common as drinking beer and has been for almost 40 years. Has Mr. Smith been to a high-school recently where marijuana use is equally common. What is of interest beyond archetypical comments such as those that come from Mr. Smith or at the other end of the spectrum the American Civil Liberties Union is that the medical use of marijuana crosses ideological lines. Liberals are delighted medical marijuana use has become easier and patients less likely to be prosecuted. Conservatives, while unhappy about medical marijuana, are delighted that the Obama administration could be perceived as taking a states rights approach. Conservatives love deferring to a state's rights stance.
The states right stance is why I am worried about the larger implications of the Justice Department directive on marijuana use. The Justice Department has provided guidelines and given specific examples of under what circumstances people will be prosecuted. This sounds very close to what was just decided in Britain by the Crown Protective Service with regard to assisted
suicide. When I combine this with assisted suicide as it is being debated by the court in Montana a precedent has been set. While the law may state one thing, prosecution is not likely. In the case of medical marijuana its use has been proven successful in cities like Seattle. Thus it is no surprise that Obama listened to Richard Gil Kerlikoske, former police chief of Seattle now a top drug advisor in the administration. Since Obama has a penchant for making decisions that are designed to please different constituencies could a case be made to let states decide the legality of assisted suicide. This seems to be the growing trend. The medical use of marijuana has popular support nationwide and in some states assisted suicide not only has popular support but has been made legal. Could the legalization of assisted suicide in Washington and Oregon yield the same results that the legalization of medical marijuana has had. In 1996 California was the first state to make the use of medical marijuana legal. Today, fourteen states have passed similar laws. I hate to be alarmist but it seems to me that at first glance most think yes, assisted makes sense. If we can euthanasia a dog why can't we end a person's suffering at the end of their life as well. This is a great sound bite but scratch the surface of the assisted suicide debate and a very different reality emerges. Those that take advantage of assisted suicide are often not terminally ill. Think Daniel James who I have written about many times. While I may value my life, I know others do not. I am not alone. Far too many Peter Singer's of the world are willing to end the the lives of those that are perceived to lack value. Assisted suicide is a step toward eliminating, killing, those we do not value.
Monday, October 19, 2009
Handicapped Parking is Still No For Me
Yesterday I read a story in the New York Times about handicapped parking that gives me a good excuse to update what I wrote about last July: that is l no longer use handicap parking. Apparently California is disturbed by the large number of people that use handicapped parking fraudulently. Governor Arnold Schwarzenegger signed into law a measure that increased the fine for violators of handicap parking. Repeat violators can be fined up to $1,000. California has a car culture that is unique unto itself and it is no surprise to me that the governor is upset. Since 1994, triple the number of California drivers have handicap placards. How dare those crippled people ask for the must mundane of rights! Is wide spread fraud common? Of course it is. Frauds exist in California, New York and every state between. My reaction to this hardly news worthy story is so what. Being unable to find a parking spot is an inconvenience. I have learned a lot about this inconvenience in the last few months. Since July, I have not parked in handicapped once. My political refusal to use handicap parking is going well. I have not gotten hit by a car zooming by me in a parking lot. However, I have wasted a lot of time driving around and around looking for a place to park. I have also dropped groceries pushing my wheelchair to the end of the lot where I prefer to park. I have even been yelled at by strangers who exclaim "You should not be so far away from the entrance. You are a hazard".
The above has led me to wonder if handicapped parking a right or a privilege? More generally, what does handicap parking tell us about disability in American culture. To me, handicapped parking is a privilege. It is the acknowledgment that certain people have trouble physically navigating their surrounding environment. People who are elderly and those that cannot navigate long distances come to mind. People with heart or lung disease who lack adequate circulation or breath also come to mind as do women that are nine months pregnant. But what I do not think of is the poster image for handicap parking--wheelchair users. As I wrote in July, I do not think I have the privilege to park in handicapped parking. Simply put, I am too physically fit. I reject the medical model of disability, one that would legally enable me to use handicap parking. Thus I see handicapped parking as being nothing more and nothing less about a physical impairment. My physical impairment, a spinal cord injury and resulting paralysis, does not preclude me from being physically capable. If I can ski and kayak for miles on end do I truly need handicap parking. In a word no. But am I perceived to be the iconic image for handicapped parking and that is wrong.
The debate, angst and furor over handicap parking says less about car culture than it does about our skewed perception of disability. What causes people to get upset and pass laws about handicapped parking never ceases to amuse me. These same people do not think twice about violating the ADA or the waiting lists for necessary services for people with a disability. No one thinks about institutions that warehouse people with a disability when they could with minimal support live in the community. No one complains about the barriers that exist once people park their cars and cannot enter buildings because there is no access or the "special entrance" is locked. No one wants to know why 66% of people with a disability are unemployed or why so many live below the poverty level. Instead, the average person accepts the medical model of disability without thought. Handicapped parking is for people like me, the chrome police. People like me must be protected. But what is being protected need not be protected at all. I do not care about handicapped parking, I care about my civil rights and those rights are violated on a regular basis. This sort of story is never deemed newsworthy. The iconic images associated with disability are wrong, demeaning and must change. We need to think about much more than handicapped parking. We need to think about the rights of people with a disability and consider them a distinct and insular minority group. We need to break down the barriers between groups of people with a host of different disabilities. We need solidarity. People must unite and handicapped parking is not what we need to rally around. Instead, we need to ask President Obama why he does not have a full time person on his staff working on disability rights (kareem Dale wears far too many hats and cannot do his job well). We need to listen to ADAPT and question why we do not have a Community Choice Act.
I am not sure what I can do aside from write, advocate and teach. Yet I have learned one thing in the last few months. When you don't park in handicapped parking you get a lot less door nicks on your car. No one leaves coffee cups on your hood, gum on your tires, or bangs their shopping cart into your car because they are pissed off you have a better spot to park your car. What I am thinking of doing though is giving up my handicap plates entirely. Yes, that means braving the department of motor vehicles and asking for regular plates. I wonder if I can do this via the mail. If so, my handicap plates are history. If not a trip to the motor vehicle office is in my near future. I will keep you posted.
The above has led me to wonder if handicapped parking a right or a privilege? More generally, what does handicap parking tell us about disability in American culture. To me, handicapped parking is a privilege. It is the acknowledgment that certain people have trouble physically navigating their surrounding environment. People who are elderly and those that cannot navigate long distances come to mind. People with heart or lung disease who lack adequate circulation or breath also come to mind as do women that are nine months pregnant. But what I do not think of is the poster image for handicap parking--wheelchair users. As I wrote in July, I do not think I have the privilege to park in handicapped parking. Simply put, I am too physically fit. I reject the medical model of disability, one that would legally enable me to use handicap parking. Thus I see handicapped parking as being nothing more and nothing less about a physical impairment. My physical impairment, a spinal cord injury and resulting paralysis, does not preclude me from being physically capable. If I can ski and kayak for miles on end do I truly need handicap parking. In a word no. But am I perceived to be the iconic image for handicapped parking and that is wrong.
The debate, angst and furor over handicap parking says less about car culture than it does about our skewed perception of disability. What causes people to get upset and pass laws about handicapped parking never ceases to amuse me. These same people do not think twice about violating the ADA or the waiting lists for necessary services for people with a disability. No one thinks about institutions that warehouse people with a disability when they could with minimal support live in the community. No one complains about the barriers that exist once people park their cars and cannot enter buildings because there is no access or the "special entrance" is locked. No one wants to know why 66% of people with a disability are unemployed or why so many live below the poverty level. Instead, the average person accepts the medical model of disability without thought. Handicapped parking is for people like me, the chrome police. People like me must be protected. But what is being protected need not be protected at all. I do not care about handicapped parking, I care about my civil rights and those rights are violated on a regular basis. This sort of story is never deemed newsworthy. The iconic images associated with disability are wrong, demeaning and must change. We need to think about much more than handicapped parking. We need to think about the rights of people with a disability and consider them a distinct and insular minority group. We need to break down the barriers between groups of people with a host of different disabilities. We need solidarity. People must unite and handicapped parking is not what we need to rally around. Instead, we need to ask President Obama why he does not have a full time person on his staff working on disability rights (kareem Dale wears far too many hats and cannot do his job well). We need to listen to ADAPT and question why we do not have a Community Choice Act.
I am not sure what I can do aside from write, advocate and teach. Yet I have learned one thing in the last few months. When you don't park in handicapped parking you get a lot less door nicks on your car. No one leaves coffee cups on your hood, gum on your tires, or bangs their shopping cart into your car because they are pissed off you have a better spot to park your car. What I am thinking of doing though is giving up my handicap plates entirely. Yes, that means braving the department of motor vehicles and asking for regular plates. I wonder if I can do this via the mail. If so, my handicap plates are history. If not a trip to the motor vehicle office is in my near future. I will keep you posted.
Tuesday, October 13, 2009
Access to Education: Hits and Misses
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.
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 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.
Subscribe to:
Posts (Atom)