Legit Skiing and Parenting

I am officially out of the holiday season blues. A ski trip to Vermont with my son was the perfect antidote to my depressed mood and the commercialization of Christmas season. Our trip was interesting and highlighted why I love Vermont, skiing, and my son. We skied Sunday in spite of a questionable weather. Sunday morning could lead anyone to question my judgement. We woke up early and drove through rain, heavy rain, to Sugarbush ski resort. When we arrived it was pouring outside. My son thought I was nuts and when we got to the Vermont Adaptive office I was the only student that did not cancel. I was not a popular guy! When my instructor arrived she looked like she just got out of bed and said "I knew you would not cancel". I felt bad as she had to get out of bed on a rotten day. But the skies parted, well sort of, and the conditions were very wet but acceptable. All day the instructor pushed me hard and forced me to ski on intermediate terrain. I like this hard ass approach and for the first day of the season I did well. But the best was yet to come. On Monday the rain turned into snow and over the course of the day almost a foot of snow fell. The conditions improved with each and every run. And an amazing thing happened. Everything I had been told for the last few ski seasons suddenly clicked in my head. I stopped leaning my head into the hill, I was not hammering my right turns, I was looking down hill, I was turning instead of traversing, my riggers were in the correct position, and I was going fast. I am not sure who was happier me or my instructor. But it was my son that made me think and laugh with delight. He skied with us toward the end of the morning and he was full of praise. He said "Dad, that was amazing, it was like legit skiing. You went from the speed of a bike to the international space station". Let me tell you it is hard, almost impossible really, for a parent to impress their seventeen year old son.

We only skied half a day on Monday and drove home afterwards. The drive was very long and gave me a lot of time to think thanks to the fact my son ignored me almost all the way home. While I could rail against the social isolation my son's ipod creates, I valued the quiet drive and was retrospective. My son will be going to college next fall and I have been thinking about my experience as a parent. I thought about the things I have done right, regretted the mistakes I have made, and compared my parenting skills with those of my parents. While measuring up to my parents is impossible, I think I have done a good job raising my son. We are very close, or as close as a parent can be to a teenager bent on independence. Aside from the usual ups and downs all parents and children experience, the custody case I wrote about in my last post had me thinking about the impact my disability has had on my son. This is not the first or last time I have thought about this. My disability is far too visible for others to ignore and we have been born the brunt of intrusive stares and unwanted and rude comments. Like it or not, he is very well aware that being disabled in American society carries great stigma. Thankfully, like me, he forcefully rejects that stigma. And like me when the issue of disability comes up he advocates on behalf of all people with a disability. At school he points out violations of the ADA to teachers and administrators and always frames disability rights as civil rights. I have not pushed or thrust my ideas upon him. I worried about this as the fight for equality is not his fight but mine. Yet he has taken up the mantle of equality for all that few if any teenagers I know have. He has also embraced a radical ideology that I hope will last. The colleges he applied to are all hippie schools with a strong radical bent. These thoughts went through my mind on the drive home from Vermont and it dawned on me that my disability has been a positive influence on his life and my parenting skills. My son is out going, always the first to defend the rights of others, is never discriminatory, and accepting of all others. How did he come to be like this? Surely encountering discrimination head on for much of his life was a major variable. He has seen me needlessly stigmatized by strangers, locked out of routine interaction via social and architectural barriers, and treated as less than human. At a fundamental level he has always known this was wrong and as he has gotten older become more vocal about it. This vocalization has taken many forms. For instance, he is decidedly unhappy that as a teenage he does not share the same rights as an adult. He often asks me why is it okay for him to join the military, die for his country, have sex, father a child but cannot buy a beer or rent a car.

In thinking about being a parent with a disability, in some ways I consider it to be an advantage. My son understands that the world is full of gray areas and answers to seemingly simple questions are not black and white. He understands what the law states and reality are two very different things. He understands in a visceral way that world is not fair, the disenfranchised are most likely to get screwed, and he does like this one bit. He understands there is power in solidarity and thinks people with a disability need a Martin Luther King type leader to rally around. He expects the world to be a just place yet knows this is an ideal we Americans have not yet achieved. He knows the problems I encounter are almost entirely social rather than physical and though he cannot articulate it knows the difference between a medical and social model of disability. Does all this make him unusual? Yes and no. Yes, in that he is far more socially astute than his peers. No, in that he is as self absorbed as any other teenager.

To return to our drive, on the way home I did engage him once about the case of Kaney O'Neill. I briefly described the case and asked him what he thought. In his estimation O'Neill is in deep trouble if she cannot reach an agreement with the child's father. The courts, according to him, will not treat her fairly. There is no doubt in his mind that the "best interests of the child"
will be used against her. I asked him why he felt so strongly about this. In reply he said "Dad, every time you took me to the ER for stitches or an official place where no one knew you they looked at you as though you were incompetent or a Martian. Do you really think a judge is going to look past a wheelchair and see the person using it?" My son's statement is as sad as it is true. I just wish others saw it in the same way. For instance, in a recent story about O'Neill published by ABC News Arthur Caplan, a respected bioethicist at the University of Pennsylvania stated "From a bioethics point of view, this case is not particularly compelling. To me, it's a straightforward example of disability rights where the law is completely on the side of disabled persons". Caplan is correct, the law is on the side people with disabilities. But those laws are interpreted and ruled on by humans with little or no understanding of disability rights. Thus I share my son's deep pessimism that O'Neill will be perceived to be equal to the child's father simply because he will be walking into the court room.

From my great distance and with no direct knowledge of the situation I have no idea who should get custody of the O'Neill's child. What I do know is that the mother, father, and child will all lose if they step into a court of law. Having been through a divorce and separation that is the one lasting lesson I learned. I also know, as my son does, that the mother's disability is not relevant. But life is not fair nor are the courts when a case involves a person with a disability. If you question this conclusion just ask my son what he thinks.

Weary End of the Year Thoughts

I am weary and sad. No doubt this is tied to the holiday season and inevitable end of year retrospection. Another variable is the supposed good cheer one and all are feeling. For me, a person with a disability, strangers seem to suddenly want to help me or are quick with what they think are positive or cheerful comments. In the past week I have "complimented" multiple times about how I get in and out of my car. For instance I have been told it is "amazing the way you get in and out and even drive yourself". Or yesterday when grocery shopping a woman told me I was "an inspiration for the way I push my grocery cart around". I would like to think these ignorant comments are well intended but their increased frequency during the holiday season just pisses me off. I consider this a form of social harassment--a way of reinforcing the superiority of those that are bipedal. Such inane comments all share one thing in common: the assumption that people with a disability are inferior. The focus is never on what can be done but rather on what cannot be done. Disability is a personal and collective tragedy that prevents a person from doing the ordinary. This line of reasoning makes me furious.

I use a wheelchair and cannot walk. I don't think using a wheelchair is a big deal or significant loss in terms of mobility. My means of navigating the world and the social environment is different from the norm. Few people that navigate the world on two feet think this way. Using a wheelchair carries stigma. This was the case thirty years ago when I started using a wheelchair and not much has changed. The worst part of the stigma associated with my use of a wheelchair is the assumption my life is inferior. The routine is not possible and when I have the audacity to be ordinary I am lauded as amazing. Something amazing is going on but it has nothing to do with getting my crippled ass in and out of my car or pushing a shopping cart around the grocery store. What amazes me is how ignorant people are. Surely in the last thirty years society, that is me, you and your neighbors, should have concluded using a wheelchair is a different means of getting around the world we live in. Using a wheelchair should signify nothing socially. But this idea is a pipe dream. I don't see the stigma attached to using a wheelchair changing in my lifetime. For the longest time I thought my presence as well as the presence of others that use a wheelchair was enough to generate change. This was wishful thinking and wrong in retrospect. Now I think all people with a disability that yearn for equality must not simply be present but need to assert themselves. This is easier said than done. I am polite to a fault and do not like confrontations. And during the holiday season no one likes to be Scrooge like (though my son thinks I am perfect for this part). Combine this with the false belief that people with a disability are bitter or angry because they have a disability and I often find myself in a Catch 22 situation. How does one respond when a mother of two thinks I am amazing because I can push a shopping cart? Getting angry in the face of such ignorance is not helpful. An explanation that such a comment is inappropriate is too time consuming. So how do I cope? I scowl a lot and do my best to appear unapproachable. I avoid eye contact with adults, I am not open with strangers, I never answer direct questions, and am wary at all times. While this may protect me from some of the worst social abuses it does not exactly help my social life or foster change.

I wish I had the solution that would foster revolutionary change for all people with a disability. The bias we people with a disability encounter is overwhelming. It is the one underlying theme of my life as an adult. That is the assumption that I am less of a human being, that I have less rights, lesser expectations, hopes, dreams, and ambitions. I have consistently rejected this but it has not been easy. So during this holiday season I mourn for a simpler time that I am not sure ever existed. I wish I was shopping for the coolest Lego set for my son or making a ginger bread house with him. I wish he was once again sitting on my lap as a toddler telling me "Go, Daddy Go". These memories are a mix of fantasy and reality. The reality is my son was the cutest little boy and in spite of inherent human flaws we all posses a fine young man with a bright future. There is another reality though--having my ability to parent repeatedly questioned by strangers, doctors, teachers, and all those that saw a wheelchair and not the human being sitting in it. These unpleasant thoughts have been on my mind as I have been following via newspaper articles the experiences of Kaney O'Neill. O'Neill is a 31 year old mother of one and quadriplegic. Her child's father, David Trais, a self-employed Chicago attorney, has sued Ms. O'Neill for full custody of their son alleging that she is "not a fit and proper person" to care for their son. In Trais 'opinion her disability "greatly limits her ability to care for the minor or even wake up if the minor is distressed". Since a landmark 1979 California Supreme Court Decision a parent's disability cannot be used against them in custody hearings. The court ruled that "the essence of parenting is not to be found in the harried rounds of daily car pooling but rather in the ethical, emotional, and intellectual guidance the parents give the child throughout his formative years." Amen! But in the legal system the idea that a parent with a disability is equal to a parent without a disability is pure fiction. Bigotry abounds against parents with a disability and the amorphous belief that "the best interests of the child" always comes first. Those best interests translates into parents without a disability getting custody. This sentiment was perfectly expressed by Howard LeVine, a lawyer with 40 years of divorce and custody experience. LeVine was quoted in the Chicago Tribune as stating that Trais' concerns are well founded. LeVine stated "Certainly I sympathize with the mom but assuming both parties are equal in other respects isn't the child obviously better off with the father? What's the effect on the child, feeling sorry for the mother and becoming the parent?" While I find LeVine's comments offensive I do not think they are unusual. The focus is on what a person, in this case a mother with a disability, cannot do. I wish O'Neill well in her custody battle and can answer one of Mr. LeVine's questions: "What's the effect of on the child?" If my son is any indication, he has learned much from me as a parent with a disability. He understands the impact bigotry can have on a person from experience. He understands civil rights extend beyond the color of one's skin and include disability rights. He understands injustice and the difference between what the law states and reality. He has a nuanced appreciation for the struggle of all minority groups. He does not think of me as being different. I am simply his father, a man that love him very much. So, despite my grumpiness I know I am a lucky man. I live in a nice home, drive good car, have adequate employment, my son attends a good school and is looking forward to going to college. I have no right to be so grumpy and yet remain extremely sad.

Technological and Social Change

Technology has always fascinated me. I vividly recall being a sick child in 1969, the year the Mets won the World Series with my favorite player, Tom Seaver, leading the team. What I remember the most was listening to the games on the radio. Unlike today, in 1969 the World Series was played during the day. Kids had access to the latest information and scores. I have particularly vivid memories of the 1969 World Series because of technology. My father knew I loved the Mets, had memorized the stats of most players, and had a baseball card for each man on the team. He wanted me to feel connected to the games and I suspect distract me from my illness and the pain I was experiencing. To this end, he bought one of the first small transistor radios on the market. The radio could fit in the palm of my hand, truly a technological marvel, and within a day my hospital bed became the command center for the latest information on the World Series. Doctors, nurses, and workers from all over the hospital would stop by the ward and ask "what's the score". Some would ask to look at the radio and shake their head in wonder. I felt like the most important person in the world.

Not much has changed since 1969. We Americans love technology. We have embraced technology with gusto. When a problem arises we invariably seek a technological solution. Doubt me and simply observe college students or teenagers who cannot function without a cell phone, internet access, and text messages. This is not a critique but basic observation about how they access information and problem solve. While technology is wonderful and enhances our lives in a myriad of ways anthropologists have long observed that technological change takes places before social change. For example, the introduction of the washing machine reduced the labor for many women in the household but did not create gender equality. Gender equality has improved greatly but we are still far from true equality. The same can be said for people with disabilities--we are far from equal but have been empowered by technological advances. For example, I have witnessed a veritable revolution in wheelchair technology that has been driven by the bicycle industry. Carbon fiber wheelchair frames and quick release wheels are routinely used. Adaptive sports gear abounds and my life has been improved as a result. But I firmly believe our struggle for equality is not an issue of technology but one of social bigotry. Thus I have mixed feeling when I finish articles like the one I just read in Scientific American about the robotics involved in creating a "smart wheelchair". John Spletzer, an associate professor in the Computer Science and Engineering Department at Lehigh University is building on his work in with autonomous vehicles to create "smart wheelchairs". The wheelchairs Spletzer is designing use artificial intelligence, lasers, sensors, and mapping software technology to operate and navigate power wheelchairs. The prototype wheelchair can navigate sidewalks, parking lots and outdoor areas. The last accomplishment, outdoor areas, impressed me as did a quote from Spletzer: "My work aims to push the envelope in wheelchair autonomy. It will not be limited to structured indoor environments. Instead, it investigates the much more difficult problem of autonomous operations in unstructured environments outdoors".

I have no doubt Spletzer's so called "smart wheelchair" is on the cutting edge of technology. I wish him well but hope he is attuned to the fact most people with a disability do not have significant financial resources. And if I have learned one thing about contemporary technology it is expensive--very expensive. Time will tell if Spletzer's invention will be commercially viable and this is where society fits in the picture. There is a demand, need, for such a technologically advanced wheelchair. In fact millions of people could benefit. But do we as a society value the people that could utilize this technology. In a word, no. Previous examples of technologically advanced wheelchairs have all failed. They did not fail because they were not needed but rather insurance companies balked at the price and refused to purchase them. Why empower a person with a disability with a wheelchair that costs thousands of dollars when one that costs a few hundred dollars will suffice. This is a social problem that must be addressed and cannot be solved by technology. Spletzer's overall goal, "unprecedented levels of autonomy", is admirable but the barriers to equality are deeply rooted in the way society perceives people with a disability. Society may love technology but is socially selective in how it is utilized. Sadly, everything I have experienced in the last thirty years leads me to conclude society does not think we people with a disability are worth the expenditure. Expensive technology is better of being utilized elsewhere. This may be wrong and may over time change but is the world I live in.

Sex, Drugs, Rock & Roll and Hollywood

Yesterday when I finished writing my post about Hollywood prejudice against actors with a disability I came across news that a new film about Ian Dury is being released in January 2010. Titled Sex, Drugs & Rock & Roll, the film chronicles Dury's life and rise to stardom. Dury was a key figure in Punk Rock, lead singer of the Blockheads and an influential song writer. Avid readers of this blog will recall I wrote about Punk Rock last June and the impact it had on me when I was first disabled. By far the punk song I liked the most aside from the Sex Pistols God Save the Queen was Spasticus Autisticus. The refrain in Spasticus Auticus empowered me to change--to become assertive in a way I was not sure was possible. Now many years later I am hopeful the film will delve into this important song written for the International Year of the Disabled circa 1981 and Dury's experience with polio as a seven year old boy. Dury wore a heavy leg brace (a caliper as the British call it) and used a walking stick. Dury also went to a "special school", Challey School for Crippled Children. How he emerged from his experience with polio and a segregated school system in Britain amazes me. I am amazed not because he adapted to polio but rather overcome what must have been overwhelming social bias and stigma.

I eagerly await the release of the film and look forward to how the filmmakers deal with the impact polio had on Dury physically and socially. I am particularly hopeful because the film about Dury is not being produced by an American Hollywood producer or studio. Another major variable is that the young Dury will be portrayed by Wesley Nelson, a 13 year old actor who has cerebral palsy. Imagine that--a young actor with extensive experience on television playing a character with a disability. Based in Cardiff, Nelson has stated he will draw on his own experience with disability to understand a man he never met and will portray. Nelson noted that "I read a lot about Challey, but a certain degree has to come from you and your emotion. You have to understand his surroundings which and I drew on my experience with cerebral palsy and partly used that to understand him, which you could say was handy". Handy indeed! Here is an actor with a disability getting a chance to break into films and perceives his experience with a disability as a positive. If a 13 year actor can grasp this why can't movie producers get it? Well it appears as if the producer of the film, Damian Jones, drew on the expertise at 104 Films, a production company with an international reputation in the field of disability cinema and strong connections to the UK Film Council. Not content with just an actor with a disability, during production the filmmakers also operated a disability training program also connected to 104 Film. Surely a more nuanced understanding of disability as portrayed in the film and among the production company are a likely result.

When I read about Sex & Drugs & Rick & Roll I thought about how the acclaimed American television show Glee missed a golden opportunity to portray disability in a complex way. Instead, Glee claimed no qualified actor in America could be found to play the part. The result was a poor at best episode that relied on well-worn ideas and featured a bad scene of people dancing that used wheelchairs. Perhaps the result would have been the same if an actor with a disability was hired--we are talking about American television afterall. But somehow I doubt the episode would have been quite as bad as it was. There is something to be said for having direct experience with disability. And the fact is there are times when having a disability is an advantage. Few if any people without a disability realize this. And I am certain no producer in Hollywood thinks this way. Perhaps if we had more groups like 104 Film more actors with disabilities would be hired. I guess I am still dreaming and hopeful a world where I am considered equal will exist.

Hollywood Prejudice

I have been relatively inactive recently. I am caught up with the usual end of semester madness and demands of work and family. While I may be silent, I have been following the news as it pertains to disability. At the forefront this month are multiple stories related to the role or lackthereof for disabled characters on television, film, and theatre. Wheelie Catholic and Wheelchair Dancer have, for good reason, blasted the television program Glee. Disabled actors have protested the use of Abigal Breslin in a production about the life of Helen Keller--they believe a blind actress should have been awarded the part. Predictably, mainstream news outlets belittle critiques leveled by actors with disabilities. Like bigoted Hollywood producers that do not caste actors with a disability to portray a character with a disability, news reports state "We tried, there are just not any qualified disabled actors. No person with a disability was good enough to play the part". Yeah, right! If this were true why do so many actors with a disability bitterly complain about rampant and persistent discrimination. Many contend, what's the big deal. Well, it is a very big deal to me and it involves far more than an ideological viewpoint. As the title of Nothing About Us Without implies and graphically demonstrates when it come to disability issues people with a disability must be present for effective change to take place. Hollywood is quite content to lock out actors with a disability. They have done this in the past and they are doing so today. I cannot believe there is a lack of qualified actors with a disability. I believe overt prejudice exists as does subtle bias. I know this in part because I am in a profession, academia, that is hostile to the presence of people with a disability and disability rights. My isolation is to a degree extreme. I have always worked in isolation, that is as the only person with a disability on campus. Aside from a lack of support for my civil rights, the not so subtle message is that people on campus have no place being a professor. It is not a role I or any other paralyzed person is expected to fill.

My views are harsh. Certainly more harsh than Leonard David who recently wrote a thought provoking article, "Let Actors with Disabilities Play Characters with Disabilities", on December 7 in the Huffington Post. I greatly admire Davis' scholarship and activism but he is far too generous in my opinion when it comes to Hollywood. Of course I do not in any way want a person with a disability to get a part simply because he or she has a disability. But as Davis noted "the current reality is that non-disabled actors get to play whatever roles they want whereas disabled actors don't. So there is not a level playing field. One group has all the advantages while the other is discriminated against. The three major entertainment unions agree. It's now been a year since they launched a campaign to create equal employment opportunities for people with disabilities." And what has happened in the last year? Nothing. Actors with disabilities are still discriminated against and actors without a disability play the parts of people who are blind, deaf, paralyzed etc. The result is that we people with a disability remain unemployed in great numbers and socially invisible. We as a society can do better, much better. Don't tell me there are not qualified people looking for work in multiple professions, acting included. Yet within popular culture and the media, especially television and film, characters with disability are a rarity or, worse yet, reduced to a stereotype. This infuriates and worries me. Where are the role models for people with a disability? Who are children with a disability expected to emulate? What message is sent when we have a person without a disability caste in a role as person with a disability? To me it is truly strange when I see a person use a wheelchair in a given role and then see that same individual walk around. The larger message sent is clear: people with a disability, in this case anyone that uses a wheelchair, is not competent. This is a lie, a gross falsehood many accept. It leads to overt prejudice against people with a disability. It takes place in Hollywood, on college campuses, and in the business world. Prejudice accounts for why people with a disability are at such a gross disadvantage economically and socially. The issue is not a given physical deficit but social stigma.

Needles to say no one wakes up and thinks, as Mary Johnson demonstrated in her book Make Them Go Away, that I am going to be biased against a person with a disability. But just because this is not an overt thought in people's mind does not mean rampant prejudice does not exist. The prejudice people with a disability encounter is different from let's say racial bigotry that is clearly understood and frowned upon (all children are taught this in school). It is equally troubling that disability based prejudice is not widely acknowledged. Sure we have the ADA but few people equate it with civil rights legislation. We people with a disability are out of sight and out of mind. And frankly we could use more than a little help from Hollywood because they have a vast influence on millions of people. Just imagine what would happen if somehow disability became cool. Hollywood has the power to make this happen but chooses instead to lock out actors with a disability and more generally a disability rights viewpoint. I for one would like to be perceived as cool once in my life. Ah, dreams die hard even in my household.

Employment Situation Bleak

One person who I can always count on for a sober assessment of the social and economic conditions people with a disability find themselves in is Joseph Shapiro. Author of Nothing About Us Without Us, Shapiro often makes astute points about the economic plight of people with a disability. When I was driving yesterday I heard Shapiro on NPR commenting about an ever present and worsening problem for people with a disability--employment or more accurately rampant unemployment.

In October the national unemployment rate hit 10.2% Economists and the mass media freaked out. The grim unemployment figures made headlines nation wide. The national news led off its programing with stories about what this means to the country and the Obama administration. When I saw these reports I yawned, bored in the extreme. Was I being selfish? I suppose but what I immediately thought of when I heard about the national unemployment rate was the fact that the Office of Disability Employment Policy at the U.S. Department of Labor Surveys estimates that 21 million out of 26 million people with a disability are not even in the work force. 21 million people do not simply give up. The vast majority of these people want to work but after years and even a decade of looking came to the only logical conclusion: people with a disability face an uphill struggle to enter the work force. One could even make the case the struggle to find work is hopeless. Here I am not referring to a job of choice but any job at all. Combine the overwhelming odds against finding employment with the fact many people with a disability rely on government health care in which there is a disincentive to work (they lose health care if they earn too much). The net result is that the vast majority of people with a disability are only marginally attached to the work force in this country. This creates not only economic hardship, a loss of self worth, but further isolates people with a disability socially. Like it or not, we often judge others by what they do for a living and economic resources dictate one's lifestyle.

I wish I had a solution to the unemployment problem people with a disability routinely encounter. If I did I would not be marginally employed as I am now. My marginalization is directly related my disability yet also has much to do with the fact I am in a field, anthropology, that, like many other social sciences, is no longer valued in the form of tenure track positions. Universities have learned from large corporations and scaled back the number of people they hire full time (benefits are a pipe dream). Hence about half of all college professors are part timers like me and I consider myself a highly educated day laborer. But unlike my peers I encounter significant obstacles--social, economic, and architectural. The result is jobs are harder to find and employers do not want to hire people with a disability. Based on my observations and personal experience people with a disability are not represented in the work force. I rarely if ever encounter a person with a disability and I make it a point to ask students I teach if they have ever had a professor that used a wheelchair. Not once in the last 15 years has a student answered yes. This is a real problem and the utter absence of people with a disability in the professorial work force signifies something more significant is taking place. The same can be said for dozens of other professions.

I have repeatedly been told that employers fear making work place accommodations will be costly, require expensive technology, or worry the person with a disability is not capable of doing a given job. These misconceptions are hard to eradicate. Department of Labor figures estimate that 56% of accommodations cost nothing and if any money is involved the cost is less than $600. I for one have never had an institution make any work place accommodation in spite of the fact they were required to do so. For example, when I teach if the table is too low I take an eraser and stick it under the legs of the table. Problem solved. But what happens if I want to use the bathroom? I am often out of luck as I know to not even ask because the answer is always a resounding no. In contrast to many others with a disability, I have been able to scrabble a series of dead end jobs together and, with the support of my family, somehow make ends meet. I do not take my struggles to heart as I know much is going on well beyond my individual qualifications. There is a social, economic and institutional bias that makes entry into the work force exceedingly difficult and impossible for some. This is grossly wrong and I do not know how to force society to change. All I can do is go to work, demonstrate that I am a valuable employee and a competent if not dedicated teacher. In shot, I do my best every day. Most days this seems to be inadequate at best for I know there are millions of people with a disability that would love to have the chances and opportunities that I have had. I am a lucky man and can only hope with time others like me will get a chance to demonstrate their abilities as well.

Ian Pearl: The Dog that Bit Back

Last month I read about Ian Pearl and hoped that his story would get wide spread coverage and become part of the debate about health care reform. Sadly, I suspect few people recall who and why Ian Pearl was in the news. And yes Pearl was in news in the form of stories in the Washington Post, Miami Herald, Huffington Post, and CNN. Let me refresh your memory. Ian Pearl is a 37 year old man who was one of the first students with a disability mainstreamed in Broward County, Florida. Pearl has Muscular Dystrophy and has used a ventilator for the last 18 years. Usually when one uses a ventilator the person in question ends up in an institution. In Pearl's case he was lucky in that his father purchased an insurance policy in 1981 with Guardian Life, a multi billion dollar New York based insurance company. The policy had no lifetime benefit cap and covered home nursing care. In October Guardian Life withdrew Pearl's policy from all policy holders in New York where his father's business is based. The "replacement" plan had limited benefits and home nursing was not covered. For Pearl, this change was a death sentence (as a last resort he would have been admitted to a state hospital under Medicaid). Pearl filed a lawsuit and asked the Department of Health and Human Services to force Guardian Life to continue his insurance. All this is pretty humdrum, typical big business. Who cares if one man will die or be forced into a nursing facility where his life expectancy is nil? This all changed when Pearl's lawsuit uncovered inflammatory documents that established Guardian Life had created a "hit list" of its costliest members they wanted to "get rid of". Who did Guardian Life target? People with muscular dystrophy, multiple sclerosis, brain injury, and paralysis. Guardian executives referred to people like Pearl and my paralyzed ass as "dogs" and "trainwrecks". They openly debated how to get rid of people with expensive and chronic conditions. It is against the law to cancel individual members with health problems so Guardian Life decided to cancel plans for all members of the specific plan Pearl had. A federal court ruled the Guardian Life actions were legal, barring an order by the Department of Health and Human Services, and that as of December 1 Pearl would lose his policy.

Ian Pearl's story has a happy ending. Guardian Life reversed its decision once it got bad publicity and restored Pearl's policy. Surely characterizing Pearl as a "dog" and "trainwreck" did not help Guardian Life's image and prompted the CEO, Dennis Manning, to apologize for the memo. Guardian Life's contention that policies such as Pearl's that offered unlimited home nursing was too expensive for small business customers to buy failed to resonate. Legislators have also stepped into the picture in New York and are trying to pass what they call Ian's Law that will prevent insurance companies from discontinuing policies deemed too expensive. I am obviously relieved for Pearl but know his ability to fight back was not the norm. Thus I cannot help but wonder how many others "dogs" with muscular dystrophy, multiple sclerosis, brain injury, and paralysis have had their policies discontinued? How many people have died as a result of Guardian Life's effort? More generally, are chronic conditions i.e. expensive medical care the reason why people spend so much on health care policies? Guardian Life is an old company whose tag line is "Solutions for Life". Well, it appears Guardian Life's solution is get rid of people like Pearl and me whose life is not valued or at least deemed too costly.

Guardian Life is not the entire problem but rather a symbol of a much larger issue. First, there are no ethics in business. We live in an era of global capitalism where the bottom line, money, is more important than any other variable. No amount of individual wealth is enough. This is a new era for Americans my age that came of age when paternalistic capitalism was the norm. I vividly recall my father telling me his company and others like it had the moral responsibility to take care of its workers. Can you imagine any CEO stating that today? I am not naive. My father and other wealthy capitalists wanted to make a profit but knew the difference between right and wrong. Targeting "dogs", people that truly need health insurance, is simply wrong--especially for a company that reported $7.5 billion dollars in revenue and a net income of $437 million dollars. What I want to know is why did no one at Guardian Life state the obvious--people like Pearl need their policy to survive and as such the policy must be honored even if they lose money. Second, health care costs in the last decade have sky rocketed. Every person that has been ill or can read a newspaper knows this. At the same time, companies like Guardian Life have drastically scaled back the benefits in the types of plans it carries. In home nursing care is deemed too costly and by contemporary standards Pearl's policy is generous. The overwhelming bias against home care reveals what ADAPT has been fighting for years--the nursing home bias. It is far more humane and economical to provide care for a person like Pearl in his own home. Think about it this way: would you like to live in a hospital or nursing facility at age 37? I think not. Third, I have noticed in the last few years that popular culture and the mass media have decided that life on a ventilator is no life at all. TV shows such as ER and movies such as Million Dollar Baby receive accolades while depicting life on a ventilator or with a disability such as paralysis as a fate worse than death. This is infuriating to me for it contradicts everything that I know and believe. We humans are highly adaptable, have great individual variation and these are traits that should be valued. Instead, there is an effort under way to kill Pearl and by extension people like me or at least manipulate our bodies in ways that are questionable at best (think the Ashley Treatment).

I am not being extremist--if you doubt me read the work of Peter Singer who would prefer people like Pearl did not exist as he would encourage parents to kill infants with disabilities. A belief that has filtered into neonatal units as the journal Pediatrics recently reported nurses considered death preferable to a life with a disability. How and when did people with a disability become expensive unwanted commodities is a question I do not have the answer to. A variable surely is simple numbers, there are more people with a disability living a rich and full life. But that life takes money and support in the form of adequate health care. More importantly though life with a disability must be valued. People at Guardian Life cannot consider Pearl and me to be dogs. We are human beings and our humanity must be recognized. But this effort does not begin or end with Guardian Life. My neighbors must consider me, a man that uses a wheelchair, a part of the community and demand public buildings be accessible. Schools must see past a given disability and acknowledge and value the potential of all students. Colleges must do the same and make an effort to include disability studies into the larger curriculum. Corporations must hire people with a disability. Citizens must elect candidates with a disability. In order for me to not feel a class apart from the rest of society people like me must be included at every social strata. Until that happens corporations like Guardian Life will continue to do everything in its power to get rid of dogs like Pearl and me. Thankfully some dogs like Pearl bite back and this bad cripple will continue to wield a mean pen and assert his civil rights.

Visual Activism is Not Enough

Rosemarie Garland-Thomson is one of the leading figures in disability studies. I respect her scholarship yet find her passivity frustrating in the extreme. She has a new book, Staring: How We Look, that I am using as a required text for my class on disability and anthropology. Staring is thought provoking and by far Garland-Thomson most accessible work to date. Garland-Thomson explores a little discussed subject: why humans stare. In Staring she carefully crafts theoretical arguments with imagery in a way that prompts one to think in a different way. I particularly admire her use of visual images that are directly linked to memoirs, art, popular culture, media representations of disability, and why we stare at certain bodies and body parts. Garland-Thomson six part text ends with a short section entitled "Visual Activism", a great idea as far as it goes. In short, Garland-Thomson praises people such as Matuschka, a flamboyant model who had breast cancer and changed the way we think about the implications of the disease by exposing her scars thereby commanding others not to look away. Garland-Thomson also points to Harriett McBryde Johnson, a disability activist who debated Peter SInger and found herself on the cover of the New York Times Magazine section. Positioning one's self in the public eye can be part of claiming an identity that is linked to disability and empowerment. This is fine in theory but does not nearly go far enough to force effective social change, change that will truly lead to equality for all people with a disability. Visual activism is too passive an approach for me. Being out there is not enough because people do not want to change their views with regard to disability. Most people have little or no experience with disability and the little they do know is often wrong. I cannot blame people too much--the media does a horrific job representing people with a disability and the most well known person with a disability in recent years, Christopher Reeve, did nothing to foster the development of disability rights. Indeed, Reeve accepted a medical model of disability, sought out a single goal, cure, and reinforced many dated beliefs about disability.

So what do I suggest in place of visual activism? I think we people with a disability must not only get out in the public, be in the public eye, but be confrontational in a polite but assertive way. When we confront a lack of access we must assert ourselves in way that demonstrates that the issue is not singularly unusual but involves a violation of our civil rights. This is not just wrong but illegal and we cannot be bought off with a $100 voucher from an airline or a free hotel room for the night. This confrontational style can take many forms and dawned on me this summer on a trip to Seattle. Let me provide two example: First, when I was in Seattle I stayed at the Marriott. I booked an accessible room and it had the worst designed bathroom I have ever encountered. The shower had a bench seat that was so far from the shower head the water could not reach any person that sat on the bench. I was able to move to a room that had a functional bathroom but I have not let the issue go. Since the summer I have been in continuous contact with the Marriott and am trying to force them to make the bathroom accessible. I have turned down multiple perks since I complained because I do not want them. What I want is to see is change as in making the the bathroom accessible as advertised. The manager and the Marriott does not understand the point. I am not dropping the issue and cannot be paid off. My complaint is about equality and I hope they will eventually understand this. Second, when in Seattle my son and I spent much time eating and shopping our way through the Pike Street Market. I truly love the seafood for sale and funky nature of the Pike Street Market. I do not like the crowds and grew frustrated when people would often comment "watch out for the wheelchair". After hearing this inane comment too many times I became more than frustrated. So on our way back to out hotel when I heard "watch out for the wheelchair" a light bulb went off in my head and I turned to my son and repeated the phrase with one modification. The person that stated "watch out for the wheelchair" was a woman wearing black shirt. I mimicked her phrase and voice and told my son "watch out for the woman in the black shirt". The look of utter confusion on her face was priceless. My son was not only highly amused but we repeated this again and again with consistently interesting results. Since my experiences this summer at Pike Street Market if someone ever states "watch out for the wheelchair" I instantly repeat and modify this phrase.

The point I am trying to emphasize is that direct action is required for being present is simply not enough. Garland-Thomson was on the right track but too passive. We people with a disability must shatter old stereotypes and force people to change. We can do this via direct confrontation that has an edge but is still polite. There is much change that needs to take place and in some ways what I am suggesting reminds me of skiing on busy weekends. When looking down the slope and I see many people below me my brother in law half joked it was a "target rich environment". When I go out the door and interact with the ignorant bipedal masses of people that surround me I always feel like I am in a "target rich environment". Being present is fine but being subversive is even better.

Anger Helps

In the Body Silent Robert Murphy wrote about two types of anger. The first, existential anger, involves a pervasive bitterness at one's fate. Existential anger fuels self hate and is tied to shame and guilt. I do not know any people with a disability that feel this sort of existential anger that is directed inward and is inherently self destructive. In contrast, I know many people without a disability that think all people with a disability are angry because of their physical disability. More than once I have been accused of having a "chip on my shoulder" or that it "always has to be about me". What these statements assume is that the problems I have, and obvious anger, is of my own making. But this is simply not the case. My anger does not stem from my inability to walk but the skewed social interaction, stigma, and fear placed on top of an existing physical deficit. This is a point most people in my experience don't grasp and gets me to the second type of anger, situational anger. I have lots of situational anger. Situational anger is why I consider myself a bad cripple. Simply put, situational anger is a personal reaction to a perceived injustice and a violation of one's civil rights. I am not angry because I cannot walk up the steps. I am angry because the law mandated a ramp be constructed and that law has been ignored for a decade. I am angry at the situation and needless physical barrier. I am equally angry when my civil rights are violated as when I try to vote or attend a sporting event without being harassed by strangers who object to my presence. Situational anger is very common because people with a disability are not valued and access is not a priority in this country. If people with a disability were truly valued the unemployment rate would not be near 70% nor would 67% of polling places be inaccessible to me.

To me, situational anger is good. Situational anger rejects commonly held stereotypes and involves asserting one's civil rights. I am all for this. And this is the best thing the disability rights movement has going for it. Interesting to me is that the people I encounter most willing or likely to become angry are not disabled themselves. Instead, the people I see become angry are parents of children with a disability. I wish I could figure out a way to forge a relationship with these angry parents because they have the ability to change our educational system, one that is profoundly flawed. Actually they are changing the way we educate children with a disability and by extension the way we perceive disability. Problems abound as does prejudicial attitudes, especially given the economy and tight school budgets. But I am hopeful because people, parents of children with a disability are fighting back and rejecting dominant socio-cultural norms. I know this to be true as I read editorials from all over the country and parents are asking why their kids with a disability do not have the same rights as others. For instance, in the Kansas City Star, hardly a radical newspaper, Lisa Cannady wrote about her experiences. On November 8, she wrote "Our Most Vulnerable People Deserve a Full Chance in Life". I quote:

"There is something, collectively, in us that has allowed us to ignore the most vulnerable among us. From the waiting list that thousands of Kansans with disabilities have to negotiate, to comments earlier this year by President Obama about the Special Olympics, it is clear that disabled people remained largely disenfranchised. This is the last taboo, the group that it is still acceptable to marginalize.
The ugly truth is that when the needs and rights of people with disabilities are not upheld, when indignities — the big ones and the little ones — are allowed to go unchecked, it tells this vulnerable population that they don’t deserve better. It tells them substandard care and consideration are all that special needs people are worthy of.
As the mom of a special needs child, I am not prepared to accept that as my child’s due. I am not raising my son to sit at the back of the bus."

Cannady is doing exactly what Robert Murphy wanted people with and without a disability to do: reject existential anger. Cannady is not angry her child has a disability, such anger would be counterproductive. She is angry with the prejudicial attitudes, needless obstacles, waiting lists and lack of value placed on educating students with disabilities. We have the power to change this and situational anger is one way to attack the problem. The real trick is not so much the anger involved but in getting society to see past the stereotype of disability as tragedy. As of today society is unwilling to understand why people with a disability are angry but with more parents and bad cripples being produced every day the chances for change are increasing. So this morning I extend a hearty cheers to a mother in Kansas who I have never met but know she is on my side. What a great way to start the day.

Baby RB To Die: In My View the Inevitable Outcome

Baby RB will die. I fully expected this result but not the way it came about. According to British news outlets Baby RB's father withdrew his opposition to have life support removed. This took place one day after Andrew Bush, professor of pediatric respirology at Imperial College London testified that a mother's wishes should outweigh those of a father. Based on my understanding of the case via news sources, the pop psychology presented by Dr. Bush sealed Baby RB's fate. If this was not troubling enough, the words of the judge, Justice McFarlane, made it clear that Baby RB had no chance. And if you ask me Baby RB was never given an unbiased chance to survive. Once one gets past the superlatives heaped upon the parents involved, tears shed, clothes worn, and digs deeper the Judges words are sobering. In Justice McFarlane's estimation: "It is appropriate for me to say one or two words, not in judgement, but in endorsement of this sad but in my view inevitable outcome. It is I suspect impossible for those of us to whom such an event has not happened to do more than guess at the impact of it upon these two young parents. In one moment all of the hopes and dreams that they will have had for their expected baby will have been dashed and replaced with a life characterized by worry, stress, exhaustion, confusion and no doubt great sadness."

Clearly Justice McFarlane accepted the views of the "experts" that considered Baby RB's life a sad and pitiful existence. Is this assessment correct? I have no idea. But what I do know is that Justice McFarlane was unable or unwilling to accept that life with a severe disability does inevitably lead to a miserable life. It is as though Justice McFarlane took a page out of an old book, one which assumed a medical model of disability was gospel truth. In this book the doctor is always right (mothers too according to Dr. Bush) and life with a disability is bad--very bad. But why is life with a disability bad? This is the question that Justice McFarlane and many others conveniently ignore. The negative perception of disability is not based on science but rather on society's fear of life with a disability. Sure we build ramps, care for crippled kids and we do this out of the kindness of our heart. What society does not want acknowledge is the most basic need of people with or without a disability--the quest for our very humanity. Baby RB will be killed with kindness by two loving parents lauded by a judge. Baby RB had no chance--our cultural system never valued his existence. By extension, society does not value the presence of any person with a disability. I know this to be true because I have faced bigotry and ignorance for decades. The problems I encounter have nothing to do with my inability to walk but the societal bigotry placed on top of my physical deficit. This is the real issue, one that has not changed much since I was paralyzed 30 years ago or in the 19 years since the ADA was passed. My views are harsh but reinforced by ignorant comments, the utter lack of access, and simple refusal to negotiate difference. Thus in contrast to what others think when I see a person with a disability I see a hard assed survivor. Someone that has learned how to adapt and overcome a hostile social environment. A person that leaves their home with the knowledge they will encounter bigotry, be an unwanted presence yet asserts their most basic human rights. If there is anything sad about the case of Baby RB it that he was not given a chance. But then Baby RB has a lot of company--too many people with a disability are never given a chance or confront a system that prevents them from succeeding.

Baby RB: A Miserable, Sad and Pitiful Existence?

A legal battle is taking place in Britain regarding Baby RB. Doctors caring for a child known only as Baby RB is at the center of a life and death court case. This battle pits two parents against one another. The mother, supported by Baby RB's doctors want to withdraw life support from the one year old child. The father who is separated from his wife is fighting the mother and doctors efforts. The Family Division of the High Court in Britain and Justice McFarlane will decide if Baby RB lives or dies. As one would expect the press has sensationalized the story. Newspaper articles refer to the age of the parents, how they split up amicably, the number of hours they visit their child daily, and what the mother has worn in court. Nuanced debate is utterly absent. The important issue that is lost in the hysteria and headlines is basic: for the very first time a court will decide whether a child lives or dies, a child whose brain function is normal. You read that last sentence correctly: Baby RB's brain function is not impaired. This is subject to some debate because in the words of one doctor "it would take many months or years to develop a two way communication system". Thus it is entirely possible Baby RB can think as clearly as me and the people reading these words. Think long and hard about the implications of this.

Baby RB has a rare condition known as Congenital Myasthenic Syndrome (CMS). I cannot comment on what life with CMS is like. What I can comment on is the overwhelmingly negative assessment of what life is like for a person with a severe disability that have been made in court. What the mother and the doctors that support her decision want to do is kill; kill with love and kindness by removing life support. This is as perverse as it is wrong. It is an emotional argument, one designed to make us cry rather than think. And, as humans we must think long and hard about what is being said in court. For instance, the mother's legal representative has stated "She has seen the pain he experiences just to survive. In her mind the intolerable suffering experienced by her son must outweigh her own personal grief should she lose her child". Michael Mylonas, acting for the hospital trust, stated Baby RB was the "most severely injured child" and evidence compelled the hospital to seek "a peaceful calm and dignified death with palliative care to prevent suffering". Doctors that have appeared in court who support the mother state Baby RB is living "on a knife's edge". This a great sound bite that garnered many headlines. A more sober assessment was buried in a newspaper article that gets to the crux of the issue: "It troubles me that I am committing him on a daily basis to ongoing ventilation in an intensive care unit where I think his daily existence is distressing and that he does not have the basic building blocks which I see as necessary to live in the outside world". How does this doctor know whether Baby RB is distressed? Baby RB knows no other reality and his parents report they can recognize when he is unhappy or in distress. They can also tell when he is experiencing pleasure or, conversely, stress. This leads me to wonder who is in fact distressed, Baby RB or the doctors charged with his care who are making a subjective assessment about his quality of life. What I find amazing is that Baby RB's cognition is being used to justify ending his life. One news report stated "tragically his brain is not affected, so he can hear, feel and see but is locked in a helpless body". These comments echo what the mother's lawyer stated in court: "Witnesses for the trust will say that the fact is that cognition will simply make his own plight all the more unbearable to him. As he gets older he will see glimpses of what others are able to do". Please spare me the melancholy.

When I read the words above I could not help but worry. I know that on a regular basis I pass people that think my existence is not that much different from Baby RB--miserable, sad and pitiful. Scholars, doctors, and strangers alike seem incapable or unwilling to accept the fact that life with a disability regardless of its severity need not involve pain and suffering. I do not suffer nor am I in pain. Any pain I experience is not the result of a bodily deficit but caused by the stigma that tenaciously clings to cultural ideas associated with disability. I am well aware of what others can do--I catch more than mere glimpses of this daily. Frankly, I don't care nor do I even think about what others can do. Walking, jogging, running is not relevant to my life. I fail to understand why we as a culture place such great value on such mundane abilities. Sure the human body was intended to be upright, locomotion bipedal, and for our lungs to operate independently and without mechanical intervention. But this is not always possible and we humans are an amazingly adaptable species. When it is cold we put on warm clothes, when it is hot we seek the shade. We live in all sorts of different environments and we adapt to our surroundings without question or thought. That is we adapt without thought or question until disability enters into the equation. We do not equate adaptation, the bedrock of modern biology and evolutionary theory, with disability. Instead, we perceive disability as inherently bad--something that must be overcome or in Baby RB's case a disability so severe death is preferable. I completely and utterly reject this line of reasoning. I value my existence even though society would prefer my silence, isolation or death.

After reading and thinking about Baby RB this week I feel as though I am at war in my own country and well beyond its borders. Baby RB's mother wants her own child dead and as such is quite like Daniel James' parents that took their son to a suicide clinic and helped him end his own life after a spinal cord injury. These good people only saw pain and suffering--a thought that sends chills down my paralyzed spinal cord. I feel chills because I have no doubt many would like to end my suffering and pitiable existence. Few are willing to voice such an opinion as this would be in bad taste. No one will baldly state life with a disability is not worth living. But the lack of statement to this end does not stop the thought process or its implications. Instead we get people like Peter Singer who writes about lofty goals such as the amelioration of poverty throughout the world. One way to reach this goal is to seek to help the greatest number of people. Singer's goals are great and given unwarranted respect given his position at Princeton University but dig a little deeper and next thing you know babies like Baby RB will die. What will follow this? Should all babies determined to be severely disabled die. Should elderly people experiencing dementia die. Should people with cancer die. Should people with spinal cord injuries die. If so, who gets to make these decisions? And more to the point what does this say about humanity? I can tell you where this line of reasoning will go. The weakest least respected members of society will suffer and needlessly die. I might die. You might die. I am not being reactionary. I know this because I am perceived to be weak, lack social respect, and many think I am suffering and in search of a cure. I am a member of an underclass that has a long and depressing history filled with tragedies such as forced institutionalization and almost universal social invisibility.

I think we people with a disability are on the cusp of major social breakthrough in spite of stories like Baby RB. I suspect, hope, enough people such as myself and others are now in communities across the land that we are reaching a critical mass. We are not silent, we are not meek, and if I am any indication we are angry. We have rights and are willing to assert them. And now is a good time to let our voice be heard. We must protect not only our rights as people with a disability but we must band together with those like Baby RB that have no voice. We must protect Baby RB, fight for his right to live. We must fight for the rights of another child known only as Ashley X who has the right to grow into an adult body, a right that was violated and laws broken in the process. We must fight together and for one another regardless of our respective disability or cognitive functioning. We are all in this together, those with and without a disability. We are fighting for nothing more and nothing less than our very existence. Baby RB reinforced this belief, one I hope many share.

Hostile Social Environments

With election day almost here I have been thinking of hostile social environments. I know when I vote I will most likely have a negative social encounter with either a poll worker or fellow voter. It happens all the time. This made me think of the other places I try to avoid because I know I will have a bad experience. By bad I mean I will be treated with disrespect or encounter a needless architectural or attitudinal barrier. Major professional sporting events are often problematic. Architectural barriers in the form of grossly inadequate handicap seating areas are a major variable as are ignorant drunks that seem magnetically drawn to my wheelchair. Secondary schools in my area, particularly my son's public school, seem hostile to the presence of a parent with a disability. But these place pale in comparison to the following places:

1. All Catholic churches: I grew up Catholic and went to Catholic secondary school. I have the emotional scars that often come with such an upbringing. Yet in spite of it all I still consider myself to be Catholic and when troubled read the Bible. In short, I am a believer. But I cannot believe nor could I ever pray or worship at Church. My problem is that I expect to be treated like everyone else. This does not happen in the Catholic Churches I have visited. Many churches have architectural barriers that are easily overcome and I often notice Churches have ramps. What no Churches have is a welcoming social environment. Each every time I go to Church I have a bad experience. It is the norm for someone to come up to me and state "If you prayed harder you would walk again" or "If you accept Christ as your savior you will rise up and walk". Usually this comment is uttered by an elderly person. This sort of old fashioned ignorance is somewhat forgivable though certainly demeaning. But this is not the lone reason why I dislike going to Church. It is the truly strange reaction I get from religious zealots who seem to think one of two things: 1. I am the anti-Christ. 2. I was struck down by God to punish me for sins I committed in my lifetime. This sort of reaction I cannot live with. Frankly, part of me is worried about my personal safety when I encounter these people. The fact the Church and so called leaders such as priests and nuns are present when these comments are made and do nothing is unforgivable. Their silence in the face of such blasphemy is an afront to my humanity.

2. Health Food Stores: I never ever go into health food stores. Thanks to the internet, I have not been to a health food store in a long time. When shopping in such a place I encounter people who are intensely curious about my disability. They want to know why I use a wheelchair and how long I have used one. I do my best to avoid this line of questioning because I know what is coming next. Comments such as this are the norm: "If you took the following vitamin regime I am sure you could walk again" or "Have you ever tried the following non traditional medical routine". There is the unquestioned belief I have needlessly accepted my fate, paralysis, and that they have the knowledge to cure me. How does one respond to such an ill founded conclusion? If feeling nasty I have told those especially aggressive in their quest to cure me that all my medical problems started from an unusual vitamin regime. I do not recommend this course of action--when I have done this I have worried about getting punched in the nose.

3. Health Clubs/Athletic Gyms: Paralyzed or not, I have always disliked gyms. If I want to physically exert myself I go kayaking, hiking, or skiing. I do not enjoy lifting weights or working out on any machine. I find such activities inherently boring. But what bothers me about gyms is the stares. A gym is a place where one is very body aware, it is the nature of the beast. My body does not fit in. And when confronted with a body such as mine people stare-and they stare a lot. Mirrors abound and as do the stares. What these stares mean I am not so sure. Pity from some, curiosity, revulsion, supercripdom, whatever. It is not a positive experience. Ironically gyms from what I have observed often go out of their way to be physically accessible. I know one local gym that even offers a membership discount to people with a disability. But the barriers present are not architectural but social. Simply put, I do not like being stared at and hence avoid gyms.

4. Hospitals: I hate hospitals but when I walk into one I feel at home, as though an inner calm envelopes me. That antiseptic smell is comforting and akin I suppose to the smell of an apple pie baking in a kitchen. The problem is that people like me with a complex medical past draw the interest of curious doctors. Good doctors are always curious and they love to ask detailed questions about my medical history. The fact they miss is that my medical history and paralysis is more often than not irrelevant. This does not stop them from asking many questions which need not be asked. The real issue though is when I am in a hospital one and all think I am a patient. This leap in logic leads to many to make false assumptions and many hospital workers treat me as though I have no role in society. Thus in the past when I have brought my son to the emergency room staff members are stunned I am a father responsible for the care of my child. I know this because they ask "Are you the biological father?" or "Where is the child's guardian?" This of course ignores the obvious--like my son needs stitches and his finger is covered in a bloody bandage. On the rare occasion I have been a patient, the fact my needs are different are always a problem. The overwhelming concern is will my care be more work for the staff. Once it is clear this is not an issue, the problem becomes hospitals are not prepared to deal with a paralyzed body. For example, upon admission one needs to be weighed. The scale to weigh someone in their wheelchair never ever works. Examination tables are never accessible nor are most procedure rooms. In short, architectural and attitudinal barriers abound leading me to conclude hospitals are dangerous places. You see I am not fully human in the eyes of many staff workers and fear, truly and sincerely fear, my life will somehow be snuffed out because someone decides I have suffered enough.

I am very curious if readers can add to this list. I have not mentioned airline terminals and the experience of getting on and off an airplane. The point here is that mass transportation as anyone that uses a wheelchair knows is often a problem. I am sure I have missed some places that generate negative experiences. So please comment. I want to know where else I should avoid!

Democracy for All but the Crippled

I have the legal right to vote as does every other American. I do not vote in my town. Why? The polling place is not accessible. It never has been and I doubt it ever will be. Thus I vote a few towns away. This is no big deal for me. I own a car and am willing to drive a few extra miles. What's the harm? This is the harm: I am the only resident that cannot vote in my own town. This bothers me. It does not bother anyone else. I know this for a fact because people have told me this. The level of ignorance at voting time is stunning. In 30 years I have never seen an accessible voting booth--not once. Sure I see little blue wheelchair signs but they all point to booths that are 40 years old and are not modified in any way. Worse, I have been questioned by poll workers and voters as to whether "someone in my condition" has the right to vote. More than once, fellow voters have suggested I should not be allowed to vote as there must be some sort of "cognitive minimum requirement". I have had poll workers volunteer to pull the handle in the booth, a direct violation of the law. I have had poll workers offer to enter the booth with me. Another violation of the law. Suffice it to say, when I vote ignorance and architectural barriers are the norm. And this is in the wealthy suburbs. What I wonder happens in poor and rural areas where access surely is a greater challenge? The answer to this question appeared in a recent report published by the U.S. Government Accountability Office (GAO). It is obvious the barriers I encounter are the norm nationwide. 27% of polling places in the 20008 election were accessible. Let me put that in headline form:

27% OF POLLING PLACES ACCESSIBLE IN 2008

This is a national disgrace. Did this report resonate with let's say the New York Times, Wall Street Journal or other major publications? No! Did the national television news media report about this? No! Did CNN use this story as a filler? No! Did news pundits on the radio mention it? No!

Are we living in 1954 or is the year 2009? Was the ADA not passed 19 years ago? No wonder I feel about as welcome voting as a black man did during the Jim Crow era. Imagine if you will we are not discussing wheelchair access but racial segregation.
Imagine if I were black and not disabled. Imagine a sign that stated "whites only" outside your local polling place. I bet a riot would ensue. Police would be called and the national and local media would be out in force. But we are not talking about racial segregation. We are talking about the purposeful segregation of some 54 million Americans with a disability of some sort and about one or two million people that use wheelchairs. These people, people like me, have the right to vote. More than this inalienable right I would hope we have the support of the vast majority of our fellow Americans. But this is not the case. Access and inclusion is not valued, well, it is valued as long as it does not cost anything. I know this because someone like Governor Paterson, a man with a disability, thinks access is important but only if it is not too costly. I wrote about this last September. The GAO report only emphasizes this fact. But don't trust me. Read the GAO report for yourself. You can find a really detailed 47 page report that every American should be ashamed of.

Voting, we are taught, is fundamental to our democratic system. Federal law requires polling places to be accessible to all voters with a disability. The federal government knew the lack of access was rampant and in 2002 Congress enacted the Help American Vote Act of 2002. This act required polling places to have at least one voting system accessible to people with disabilities. This law is great but will only take us as far as it is enforced and socially accepted. Based on my experience as a voter for the last 20 years there is no desire to enforce the law. What the law states and reality are diametrically opposed to one another. I only need to look to and thank Governor Paterson because he made it clear there is no social demand for access. Such access is too expensive. This makes me furious. I am ashamed of my fellow Americans. I am ashamed of my town. I am ashamed of public schools that teach one thing and do another. I feel very alone today and I know why. I do not share and have not ever shared the rights of those that are bipedal. Surely the most resistant to this sort of thinking cannot dispute the facts--only 27% of polling places are accessible. Millions of people's rights are being violated and the vast majority of Americans don't care.

Ten Years of Peter Singer

Thanks go to the Daily Princetonian and No Dead Yet for reminding me that Peter Singer, the self proclaimed "most important philosopher of our time" has been at Princeton University for ten years. Singer is one of the very few scholars that leaves me speechless, unable to express myself because I find his writing distasteful and grossly misleading. I do not respect Singer as a scholar though I understand his importance as it relates to issues such as animal rights. But outside of animal rights Singer has extreme views with regard to infanticide, abortion, assisted suicide, and the treatment of people with a disability. In the past I have refrained from engaging Singer as others have; here I refer to Harriet McBryde Johnson and her well-read New York Times article "Unspeakable Conversations" circa 2003. I simply do not want to dignify his work with a cogent reply that would give his views the credibility they do not deserve. Afterall, if it were up to Singer I along with many other people with a disability would be dead.

As expected from a school newspaper, the article in the Daily Princetonian, "Peter Singer Reflects on a Decade at Princeton" by Jason Jung is laudatory. I can accept this. Princeton has spent the last decade promoting Singer and I can hardly expect the university to question its hiring practices after the fact. Regradless, Stephen Drake, research analyst at Not Dead Yet has good reason to be outraged. The Daily Princetonian original article contained a terrible error that was quickly, though inadequately, corrected . Although corrected by an editorial note, this does not change the fact the original article stated Not Dead Yet protests were "violent" and further implied they were responsible for death threats that were levied when Singer was hired. I strongly suggest you read Drake's entry about Singer and the mischaracterization of Not Dead Yet at their blog. I need not repeat what Drake wrote for his words are powerful on their own. What I want to know is to what degree was Singer involved in this misdirection? Did Singer characterize Not Dead Yet Protests to the author as violent? Does he think Not Dead Yet was responsible for the deathe threats he received when he was hired in 1999? Perhaps the author simply made a mistake. I doubt these questions will ever be answered and they highlight a penchant Singer has--when he is criticized he falls back on the same response. Poor Singer is quickly and harshly judged because his views are taken out of context. Critics rely on short summaries of his work and do not understand or take the time to read the corpus of his writings on a particular subject. This approach has been wildly successful and derailed many harsh analyses. This is why I consider him to be an ill tempered polemicist rather than a scholar willing to exchange opposing ideas. Singer effectively diverts attention from the real issues at hand. For instance, when he was hired by Princeton the controversy surrounding his appointment overshadowed the fact he was to be the Ira W. DeCamp Professor of Bioethics in the University Center for Human Values. Singer was not a bioethicist in 1996. He is not a bioethicist in 2009. Singer's area of specialization is ethics, particularly applied ethics. His work is certainly is within the realm of bioethics as are most of his controversial and extreme views. This is not the place or time to delve into this aspect of his career. Instead, I will focus on the article in the Daily Princetonian and how it conflicts with other statements made by Singer. I am doing this so I am not accused of taking his words out of context.

In the Daily Princetonian Singer noted that when he "joined Princeton's faculty in the fall of 1999, he expected good students and good seminars, but he never anticipated the backlash: a large-scale protest against his appointment that included the arrest of 14 activists outside Nassau Hall on Sept. 21, 1999". Let me contrast this statement with the following from the text Peter Singer Under Fire published earlier this year. "I had an inkling my appointment at Princeton was not going to pass unnoticed when someone forwarded me a message that Margaret Tighe, a leader of the Australian anti-abortion movement, had sent to anti-abortion groups in the U.S. Tighe told her U.S. friends about my views, and suggested that they might like to give me a warm welcome. They did". Given the fact Singer had drawn protests in the past, particularly in Germany, he must have been aware that the "warm welcome" referred to was surely meant to be hostile if not vitriolic. And here I am not referring to Not Dead Yet but rather pro-life groups who Singer wrote believed were most likely responsible for the death threats he received. Singer noted that after Not Dead Yet protests made headlines in the New York Times he was inundated with media requests. In recalling this episode he wrote "The worst aspect of the publicity was that both Shapiro and I received death threats. Since American pro-life activists have murdered doctors who carried out abortions, the threats had to be taken seriously". There can be no question here: Singer believes pro-life groups were responsible for the death threats and Not Dead Yet responsible for headlines. He further argues that the Not Dead Yet protests had no support on campus. That may or may not be true but he drew the wrath of many others among them Steve Forbes, alumni of Princeton and trustee who withdrew all financial support as a result of Singer's appointment. The New York Times considered Singer's appointment controversial and compared it to Bertrand Russell's appointment to the City College of New York in 1940.

Surely any person with an ounce of common sense would conclude protests from a host of groups Singer had alienated would mount a significant protest. Simply put, Not Dead Yet did the best job of protesting. Singer recalled in Peter Singer Fires Back that "On my first day of classes, hundreds of protesters, some of whom came from as far away as Chicago descended on Nassau Hall, the center of the university's administration. Several members of Not Dead Yet chained their wheelchairs to the doors of the building, blocking the entrances for two hours before they were removed by police. (My own class was undisturbed, thanks to a security cordon around the building in which it was held.) The protest made good television and was widely covered." This is called civil disobedience, a particularly effective means of protesting. But in this case the protests backfired. The New York Times asked SInger to write an article and restated his well entrenched views in magazine section entitled "The Singer Solution to World Poverty". This caught the attention of the editors at Harper Collins who published Singer's Writings on an Ethical Life. This text cemented his reputation on American soil and he has been working at Princeton ever since.

I find Singer as frustrating as Christopher Reeve was in terms of disability rights. Singer is a gifted writer, well schooled at crafting convincing arguments that are often wrong in my opinion. Likewise, Reeve quest for cure, a laudable goal, obscured if not damaged the fight for disability rights. Thus I find statements by Harold Shapiro, university president when Singer was hired frustrating in the extreme. For example, in the Daily Princetonian Shapiro stated "A university is a place that is at all times questioning the values we have, not just committing to the views we have. One of the roles of a university is to question existing arrangements and maybe suggest better ways of going about things, thinking about things." Well said. And how about starting with questioning the equality of people with a disability, the same people Singer is willing to kill at birth. How about questioning why 19 years after the ADA was passed universities and colleges across the country remain hostile to the inclusion of students with disabilities. How about questioning why more disability studies programs do not exist at top flight schools like Princeton. How about including disability related texts into the curriculum. How about making Princeton the most accessible and open campus to students and faculty members with a disability. These are questions Princeton and other universities should be questioning. Instead we have a polemicist such as Singer pontificating about ten years at a university that should not have hired him in the first place. No wonder academic life frustrates me to no end.

The Law and the Ashley Treatment

Solidarity. Solidarity is something people with a disability lack. We people with a disability lack solidarity among ourselves. People with a disability have little or no support from the general population. Worse yet, those unfamiliar with disability too often think disability is about a medical condition or physical deficit alone. Rarely if ever does the average citizen connect disability rights and civil rights as one in the same. Thus when I state there is no difference between myself and all other people with a disability I am looked at as though I have two heads. Puzzlement is compounded when I maintain there is no difference between myself, a middle aged man with a PhD from Ashley X who is profoundly disabled physically and cognitively. I am often asked why I hold such a "radical viewpoint". My views are steeped in not just disability identity but a thorough understanding of past abuses. Think here of Eugenics, Euthanasia of people with disabilities, forced institutionalization, ugly laws at the turn of the century etc. These travesties of justice have been on my mind ever since I read a long and frightening article by Christine Ryan (Revisiting the Legal Standards that Govern Requests to Sterilize Profoundly Incompetent Children: In Light of the Ashley Treatment, Is a New Standard Appropriate"). Ryan's article is hard to read for a layman and I am not by any stretch of the imagination a legal scholar. In fact Ryan's article reminds me of a Popular Mechanics article circa 1945. There is an interesting introduction, a long highly technical body of the article, and a pithy conclusion with long lasting implications. The conclusion Ryan reached gave my crippled body the chills. She wrote:

The Constitution provides that no state shall “deprive any person of life, liberty, or property, without due process of law.” Who qualifies as a “person” has generated much debate, especially in the context of the profoundly disabled. Persons are entitled to full moral rights and legal status, while nonpersons are not. Depending on the definition of personhood, some profoundly incompetent individuals may not exhibit the necessary characteristics. (pp. 295-6)

Yikes, how many people can look at another human being and believe they are a non-person? This is what a Canadian mom at Life with a Severely Disabled Child questioned on her blog. This observation made me think long and hard about the legal aspects of the Ashley Treatment. In thinking back at what Ashley's parents wrote I recalled that they were required to obtain legal advice to insure the hysterectomy complied with Washington State law. The parents consulted Larry Jones, a Seattle based lawyer with experience advocating for parents of children with developmental disabilities. It has been noted Jones was inspired to enter into this specialization because he had a daughter with severe disabilities. In Jones' legal opinion a court order was not required because sterilization of Ashley was not the sole or primary purpose of the Ashley Treatment. Relying on this advice, the hospital and doctors went ahead with the surgery on Ashley.

In retrospect I simply concluded the parents got bad or at least incorrect legal advise. Lawyers are human, the law subject to a myriad of interpretations and I moved on and did not give the issue much thought--or at least until Ryan tried to describe "incompetent" people as "non-persons". This inspired me to look at the case law upon which it is illegal to sterilize people in the state of Washington. Washington case law on sterlization stems back to In re Guardianship of Hayes circa 1991. While the cognitive ability of Ashley and in the case law are different, the conclusions reached by the court are clear cut. The Hayes court described the way in which sterilization petitions must proceed: Here I quote from an article by Jillian Kornblatt from this year entitled "The Ashley Treatment: The Current Legal Framework Protects the Wrong Rights":

The decision must be made in a superior court proceeding in which, using a clear, cogent, and convincing standard, the court finds that: (1) a disinterested guardian ad litem represents the incompetent individual’s interests; (2) the court receives independent medical, psychological, and social evaluations; (3) the court hears and considers the individual’s views as much as
possible; (4) the individual is incapable of making her own decision about sterilization and is unlikely to be able to in the
foreseeable future; (5) the individual has a need for contraception, including findings that the individual is
physically capable of procreation, likely to engage in sexual activity that is likely to lead to pregnancy in the near future,
and is permanently incapable of caring for a child, even with reasonable assistance; and (6) that there are no alternatives to
sterilization, other contraceptive measures have proved unworkable, the proposed sterilization is the least invasive
option, a reversible or “less drastic” option will not be available soon, and there is not an impending advance in the treatment
of the individual’s disability.

Based on my reading of Hayes it seems obvious that Ashley's parents would not have been able to meet the above requirements given the bias against sterilization. Surely some criteria could have been met but certainly not all as required in points one through six quoted above. Again, I am not a legal scholar but it seems that common sense dictates that a court order was required. However, none was sought and I cannot help but wonder why. Did Jones know the court would have ruled against Ashley parents? Could he have been willing to take the blame after the fact? Jones has a daughter with severe disabilities and is possibly biased. Why did the doctors and hospital accept without question the opinion of a single lawyer? Given the extreme, irreversible and controversial nature of the procedures involved I would think more than one lawyer needed to be consulted. To me, this gets to the heart of the cultural issues involved. Did Ashley doctors, parents, and ethics committee all consider Ashley so different she was not considered to be fully human? I am sure no one articulated this but was this a hidden or unconsciously accepted viewpoint? Was Ashley so different, so impaired cognitively that she did not share the same rights as other children? No one would consider the Ashley Treatment a viable option for a "normal" child. If this is the case what does it say about the way we view children like Ashley and by extension adults like me with a physical disability? History shows us people with a disability have been subjected to abuses of all types. That history is replete with physical violations and civil rights abuses that are appalling. And this exactly why the Ashley Treatment, renamed in recent years as growth attenuation is nothing short of dangerous. In fact it reminded me of the olden days of rehab when I was paralyzed 30 years ago. It was assumed back then high level quads had no quality of life and were often permitted to die or as doctors put it let nature take its course. With the Ashley Treatment we have inverse reasoning. For Ashley nature, that is her body, is the enemy and what could be worse than an adult female with profound cognitive and physical disabilities. Well in this day and age where all sorts of body modification is possible doctors have the power and technology to change the human body and rendered Ashley small. Just because this is possible does not make it right or legally acceptable. There is no question Ashley was illegally sterilized but that is a small part of the larger cultural discourse, one that has implications to all people with a disability. People like Ashley, me and all those in-between.

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.

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.