Disability as Disaster

The video is entitled "From One Second to the Next". Texting and driving is dangerous. I tried it once and almost killed myself. I never attempted to text while driving again. I get the need for this sort of video. In fact it has been viewed over two million times. I assume it is widely shown in high-school and colleges across the nation.  This age group are utterly dependent upon texting. I get this too.  If I want to talk to my son I text him please answer the phone. So yes this video is very much needed.

The first personal story clearly fits into a badly dated disability as tragedy genre. I had hoped that after 40 years of progressive legislation designed to empower people with disabilities a video such as this one would be a thing of the past. Sadly though, the pity/trajedy model of disability still resonates. I do not feel sorry for the mother or her son X. In much the same way, I hope no one feels sorry for me. I surely wish her son never experienced a severe spinal cord injury. I can say the same about any person that damages their spinal cord. But accidents happen--horrible life changing accidents happen.  I truly wish the young boy X was not paralyzed. I simply wish the story could have been framed differently.  I cringed when I heard the mother state "his legs are gone, his wheelchair are his legs".  I also cringed when she stated her son is "on life support" and she cannot tell her son "go in the yard and play".

At issue is how the story is told. It is designed to put the fear of God into the hearts of parents. It is designed to scare young people too. For what is the worst case scenario? A severe disability.  What is the worst disability one could have? Living on "life support".  This mother is absolutely correct about one thing: when it comes to disability "everything is a production". This both true and false. It is true that spontaniety is often impossible when one is disabled. The "production" in life for a person with a disability exists on a sliding scale. For a person such as myself who is independent the "production" process is minimal. It takes me longer to do mundane tasks and as most people with an injury comparable to mine this limits what can be accomplished in a given day. Everything being a production is false in most instances.  People do not ask the all important why? When I am out and about the why figures into a social and physical environment designed for people who are bipedal.  Wheelchair access is simply not valued. Ramps are often perceived as an eye sore and located in the back of buildings. Access often involves entering a remote and hard to find door. As a result, I have seen the worst parts of some of the best buildings in New York City. Elevators are often turned off. Wheelchair lifts are often used to store garbage. The list of violations are long. The root cause however is the same: access is not valued.  This creates a destructive vortex. Businesses spend a great deal of money to make buildings accessible. This is not done by choice but to comply with the law.  So when the wheelchair lift is not used or the accessible entrance in the back is rusted shut people get mad and think money was wasted. Again, no one asks the question why. Why is the lift or elevator not used? Well in my experience a locked elevator or locked wheelchair lift is a waste of money and useless.

Let me provide one example. The sandwich food chain Cosi is an access nightmare. The look they prefer involves tables at the entrance and a sandwich making station at a higher level up about four to eight stairs. In the Cosi stores I have been in often have a wheelchair lift. Great. Not so fast. In every Cosi store I have been in the wheelchair lift is locked. Only the manager has the key. Most stores use the lift as storage for either trash or surplus supplies. When I ask for the wheelchair lift to be cleared I instantly become a pain in the ass customer. I have even seen more than one wheelchair lift purposely rendered in operative by breaking the key in the off position.
 
The point I am trying to get at is that I wish this mother and her son well. But they need to rethink life and how they fit in it. Yes, everything is indeed a major production for this mom and her son. Life as a vent dependent quad is not easy. It is in reality hard and expensive. Some might say the same thing about me. People often comment about what a hassle it is for me to get my wheelchair in and out of my car. What choice do I have? None. And frankly I have never thought of this mundane activity as anything but, well, a mundane activity. It is not a blip on my radar. What is very much on my radar is the refusal of bipedal people to accommodate what the ADA deems "reasonable accommodations". This too is what I want this mother and her son to learn. The people who often determine what is and is not a reasonable accommodation know nothing about disability. To return to the example of the Cosi food chain, I am sure the corporation that required its stores to have a wheelchair lifts were meeting the letter of the law. I bet an executive may have even thought it is not just a legal requirement but the right thing to do.  The failure here is not physical but rather social. No one values those wheelchair lifts. At a fundamental level this is deeply entrenched. Culturally we believe that a choice is involved as to when, where, and how much will be spent on making a building accessible.  This is false. The law is very clear.

I find videos such as the one above counter productive. The take away message is not just texting and driving is dangerous. The message the mother effectively delivers is disability is inherently bad. Disability is a tragedy.  I consider this message to be as deadly as text messaging while driving. Thus yet another opportunity was lost. This has been a recurring theme for decades and as a result social progress in terms of disability proceeds at a glacial pace.

Nasty Comments Got Me Thinking

Since I began writing this blog certain topics have generated extended and extremely negative feedback from readers. Topics that are sure to prompt negative responses, tirades really often laced with profanity,  include any mention of "inspiration porn". I no longer use this term and consider its impact akin to using the word Eugenics with an academic. The mere use of the term Eugenics or "inspiration porn" negate any sort of constructive dialogue. Two other topics include the cure industry and assisted suicide. I find this quite frustrating and enlightening at the same time. Like any other human being, I do not like to be called an asshole, bitter, or a fucking idiot. However such replies are helpful in understanding the larger social significance of disability. The same can be said when I read tabloids such as the New York Post and other mainstream media rags that knowingly or unknowingly denigrate disability rights.  I know the majority of Americans have limited if any experience with disability. What little knowledge people do possess is often wrong and firmly rooted in the medical or charity model of disability. Add in the fact I work with other academics and on university campuses and my social interactions are skewed. Skewed in the sense I work in an environment that frees me from the basest forms of disability based bigotry. Given this, the tirades I receive remind me of my lowly social status.

The moniker bad cripple is apt. Some people take the time to let me exactly how rotten I am. I let the nasty comments I receive stand because I feel they are a good indication of what most people really think about disability but in routine social interaction are unwilling to state. In recent months I have gotten a lot of severely critical email regarding my post about Shane Burcaw.  I took this young man, a university student, to task. I objected to his  overly simplistic message about being happy as well as his willingness to use of "inspiration porn".  I was also not impressed with his efforts to get on the Ellen show.  My post has generated many angry replies. The last two comments were as follows:

I just finished watching Shane Burcaw's video on youtube and I decided to look him up and see how his "Laugh at My Nightmare" program was going and I found this; a blog about how much a few people dislike this young man for being happy. What the literal fuck is wrong with all of you. Who the hell are you to judge this person, someone who was born with a life threatening disability, on being fucking happy and sharing his view on life. This so called "inspiration porn" is probably the biggest load of bullshit I have ever heard. Now I'm not a blogger or anything; in fact I created this account just to say how fucking disgusted I am by this shit. You should all be ashamed of yourselves . And to everyone, including the piece of shit author of this, who left any kind of negative comment towards this young man and his fucking happiness, I sincerely hope you have to somehow live through the same hell he is. I want all of you to feel the pain he feels. 

Today's comment:

Most likely you will delete this comment based on the unparalleled amount of self righteousness exuded in this pathetic article, but wow if I've ever read a more bitter sounding, hate filled, twisted perspective article in my entire life. You should be ashamed. The kid is clearly going in the direction he was meant to go. He is not faking a sense of humor. He has it and used it to cope with everyday life the same way you seem to cry behind your key board about someone else's happiness that you can't achieve. For self loathing maybe? Here's an idea make a youtube video and advise all the cripples to be self loathing cry babies. Maybe that will work better.

The comment left today prompted me to write. These two diatribes accusing me of being: "self righteous", full of "bull shit", and a "piece of shit author".  I should also be "ashamed" of myself as I am a "self loathing cry baby".

While the language leaves much to be desired I do not think the views expressed are far from the norm. Disability is grossly misunderstood. Much of what has been taught in secondary schools is badly antiquated. The fact is the vast majority of the population firmly believes disability is a medical problem.  A few may be aware that people with a disability have been discriminated against but that problem was solved a long time ago with a law that insures all new buildings are accessible. At no point does civil rights enter the equation. People with a disability it is thought are "suffering".  The few plucky cripples such as Burcaw are inspiring because in spite of the "nightmare"that is his life he is happy. The point here is the symbolism associated with disability is inherently negative or ridiculously positive. Thus two extremes exists culturally. Burcaw is an inspiring figure for happily overcoming his disability. I am the exact opposite. I am bitter and mad at the world. My anger stems from my disability, paralysis, and my disability alone. Any nuance is utterly absent. One is either a hero (Burcaw) or the anti-Christ (yes I have been declared the anti Christ).

When I read the nasty comments I shake my head in wonder. I truly wish to connect with a wide audience curious about disability. I try as best I can to frame disability in a way that will foster the proverbial light bulb to come on. People with a disability that I know are quite content with their given physical deficit. For me paralysis is a non factor in my life. I adapted long ago and will continue to adapt as I age.  What is at issue is the social response to my existence. We live in a country with rampant unemployment--70% of people with a disability are unemployed. Mass transportation is often difficult or impossible to access. Housing is deeply problematic. When I move I operate on the assumption 95% of homes and buildings are not accessible. My choices are severely limited in terms of where I can live and how I can get to work.  My anger and frustration does not stem from paralysis but rather a society that is knowingly reluctant to make the most basic so called reasonable accommodations. This is the leap in logic the majority of Americans have failed to make: disability is not about a given physical deficit. disability is about social, economic, and political exclusion.

I the discussions that concern disability to be inherently biased. In my experience there is always the proverbial but. That little word, but, is the bane of my existence. The proverbial but has existed for as long as the ADA has existed. Go to any meeting nationwide, think grass roots, and the proverbial but will come up at some point. For example, let me create a school budget meeting. In attendance are the usual suspects: PTA president, principal, board of education members, a lawyer etc. At some point during this endless meeting held in the evening after a long day of work the subject of transportation comes up. The district has a single wheelchair accessible bus. It is referred to as the special bus and likely transports every student in the district to and from school as well as to a host of school trips. The contract the entire bus fleet is coming to an end. Two companies are being considered. The existing company is cheaper than the competing company. There is one primary difference between the two bus companies aside from cost. The competing company is new and has made a commitment to include more than one short accessible or "special" bus. It has instead, via a grant from the Federal Government,  included a wheelchair lift to 10% of all its big yellow school buses. The director of transportation states the new company would be able to transport all students with a disability on the big yellow school bus if they desired. The new accessible buses would require a change to the bus schedule.  After this short recitation there will be dead silence. All will agree access is important. All will agree every effort should be made to be as inclusive as possible to students with a disability. Access is the right thing to do. And yes here comes that dangerous word, but. But the new company is more costly. They have a limited track record and are an unknown entity. The budget is tight. Then someone will ask well how many students with a disability do we transport? The number is very small. This makes no sense. we must spend our money wisely. Another person will state changing the bus schedule will prompt a hail of protests.  Many heads nod in agreement. The lawyer will state the school is in compliance with the ADA and in the event a student or parent complains we can provide them with cab voucher. Yet another person will chime in that they know a student that broke his leg and that is what his parents insisted upon. The transportation director will state how much was spent on such vouchers. Before you know it one and all agree cab vouchers are a reasonable accommodation and that the district should remain with the existing bus company. All participants go home thinking they fulfilled their civic responsibility.

What is not stated in the meeting? The use of a single small bus, a "special bus" is a form of segregation. Students in the district have been taught a lesson. Segregation of people with a disability is the norm. Students with a disability have no right to be on the big yellow bus. Worse, the kids call the short bus the "retard bus". Kids are smart and they have learned their lesson. Their peers with a disability do not have the same rights as they do. They can be relegated to the "retard bus" and excluded. No person mentions the fact the kids with a disability are quickly and efficiently prevented from participating in routine social interaction. Typical kids grow up and become adults that simply accept people with a disability are different and do not have the same civil rights. That is typical people get to choose when and where they will spend money on disability inclusion. The ADA becomes a choice--we will comply when it is not too expensive or problematic. In part this is why people feel free to take me to task on firmly linking disability rights with civil rights. If this linkage was accepted, one the federal government instituted twenty-three years ago, opposition to disability inclusion would be objectionable. In failing to perceive disability as a civil rights issue all sorts of abuses both physical and social can be excused.  Disability many think is solely about physical suffering. The nasty comments quoted above clearly demonstrate this. Burcaw has accepted his suffering with grace and dignity. I am a bad guy because I refuse to accept my lot in life--subservient cripple happy for society's largesse. In fact  I am "biting the hand that feeds me"--those generous souls who donate money to the handicapped. Thus I am a bitter asshole. What I find frustrating in the extreme is how to undermine this line of reasoning. The anger I prompted is devoid of reason. How exactly can I get people to think?  Suggestions welcome.

Bioethics and American Society Has Lost It's Way

I have spent much of the weekend reading Tom Koch's book Thieves of Virtue. Koch is about as cranky a scholar as humanly possible. His crankiness holds great appeal to me. I am after all a bit on the cranky side myself--not much of a shock given my moniker is bad cripple.  While I am by no means an insider when it comes to bioethics, I suspect when Koch shows up at an academic conference and speaks I bet there are some scholars that likely inwardly groan. By itself, this makes me like Koch as I find the formulaic politeness many bioethicists practice unsettling. Koch's crankiness is evident on every page of his new book. I get why Koch is cranky. In fact he has every right to be.

There are passages in Koch's book I find remarkable and thought provoking. For instance, the Introduction begins with the following: Bioethics was supposed to be about you and me, about people and the medicine they receive, or desire. It was to be a tool with which individuals and the societies they inhabit could answer questions of medical practice and the research that sometimes puts those politely called human subjects at risk... it was to be a public service that brought a specific kind of analytic, moral philosophy to questions of medical care and delivery... The result would be, its progenitors promised, a set of generally applicable, universally accepted ethical guidelines at once intellectually and morally robust.  The realities of patient care and treatment (or nontreatment) were the medium of that experiment... Medicine is about how to do things; bioethics was forged to decide whether we should do them and if so, when and to whom. Well that plan did not work out as expected. And I will put it even more bluntly than Koch--bioethics has been hijacked. Like Koch, I am disillusioned in that somewhere between the 1960s and the present bioethics began to consider medical care to be a commodity. Our health care system many bioethicists correctly state does not have infinite resources. Here is where bioethics goes off the rails. Medical care is expensive and its practice cannot be based on human compassion but rather on economic efficiency. Koch calls this "life boat ethics.  Scarcity is a given requiring ethical triage. In this door enters scholars such as Peter Singer and a parade of utilitarian philosophers.

Way back when I went through the medical mill (1969 to 1978) I cannot recall a single person bemoaning the cost of health care. Of course I am looking back through the eyes of a young boy so my statement must be taken with a grain of salt. Yet even as a boy I was acutely aware of the fact I was morbidly ill. Pediatric neurology as a field was established a mere two years before I showed obvious signs of profound neurological deficits. There was not much to be done. Modern imaging and diagnostic testing did not exist. In the absence of modern technology we take for granted I would speculate I was among the last generation of people (patients) who were shown great compassion.  Compassion still exists (or I hope it does) but things are different. Technology, expensive technology, rules medical care. I am not at all sure how progress is perceived now. Likely it is the introduction of some sort of new technological gadget  that improves a profit margin. Do not get me wrong--cool gadgets such the wound vacuum and air fluidized beds, ultra light wheelchairs, etc are nothing short of awesome. I am a direct beneficiary. But as any anthropologist will tell you there is always a down side to technological innovation.  This is where I think bioethics has failed spectacularly. A history lesson is needed.

Between 1951 and 1953 polio pandemics swept the world. Parents of young children were terrified of the disease. In one year amore than 60,0000 people contracted polio in the United States alone. Our health care and social systems were mobilized to care for those that got polio. School gyms were turned into wards. Negative pressure ventilation machines, iron lungs, were invented. These machines were considered a great advance in health care. Everyone knew the iron lung was not a cure to polio. Everyone knew the iron lung would not return a person that had polio to normal.  Everyone knew people with polio might need life long care. Hospitals and rehabilitation centers for crippled children sprung up in every corner of America the most famous of which was Warm Springs.  Koch insightfully observed:

Nobody asked about the cost of new technologies that permitted patient survival. No one warned that the continuing care and rehabilitation for those left with withered limbs would be economically unsustainable. Nobody suggested that the folks saved by these extraordinary interventions would be a social burden whose public cost of care could never be recovered. Nor did anyone whisper that the long-term severity of even the best-anticipated outcomes would leave the afflicted with a quality of life so intolerable that... they would be better off dead. Medical and social ethics demanded society and its physicians do all that was possible to save and, after saving to help rehabilitate polio's fragile survivors... Cost was not an issue because to not spend the monies, to not save the poliomyelitis patient, was unthinkable.

Wow. Unthinkable.  To not do our level best to care and rehabilitate the ill, ill in larger numbers, was unthinkable. Money was not a consideration.  Insurance companies did not dictate care. This line of logic no longer exists. We do the unthinkable every day. We discharge patients from hospitals as quickly as humanly possible. The men and women charged to do this are called hospitalists who are ethically compromised. They answer not to the patient but the institution where they work. For those seriously ill and in need of rehabilitation had better recover quickly as a few weeks of rehabilitation is the best one can hope for. The elderly who have a stroke have mere weeks to recover and then are sent to a nursing home. A young person who experiences a traumatic spinal cord injury gets a few weeks of rehabilitation and are then sent to live with their parents or a nursing home. To me, these scenarios that play out every day and coast to coast are unthinkable. To me, this is a social failure that costs the lives of a multitude of vulnerable people. People very much like me.

I find it ethically unacceptable that the traditional goals of medical care (medical care in the best interests of the patient) has been abandoned. In its place we as a society have embraced a faustian bargain in the form of socially acceptable utilitarianism. Again, enter Peter Singer and insurance company bean counters. Grandma is dying, what difference does a few weeks make? The amount we could spend on her care is better spent paying her grandchildren's tuition bills. A man experiences an upper level SCI rendering him a quadriplegic--who wants to live a life like that? Let's let nature take its course. A woman gets a prenatal diagnosis of Down Syndrome and at the same time is given a date to terminate her pregnancy. Is this a choice? I think not. I surely know what is wrong with our health care system but I have no idea how to fix the problem. Koch's final chapter offers a way to proceed via complex ethics and presents some interesting alternatives. I have no idea if Koch's forward thinking final chapter is a way out of the unacceptable situation our nation is in when it comes to health care. Perhaps the Affordable Health Care is a step in the right direction. I do know the ACA can not in the long term make how we deliver health care any worse than it is today. Maybe I am perfect for the field of bioethics. I have just written a post and failed to  present a single possible solution.  Now this thought bothers me and believe me it does.

TED Talk and Richard Senelick MD Miss the Point

I have been spending an increasing amount of time with clinicians. These men and women perplex me. On the one had, they are very smart, work hard, and are clearly dedicated to patient welfare. They truly want to do their best. I admire this. On the other hand, the majority of clinicians I meet are clueless when it comes to disability. Clueless not within the very narrow confines of medical care but rather with the larger social implications of life with a disability. Clinicians know they work within a medical model of disability and most are aware a social model of disability exists. This is I suppose progress but it is glacial at best. This morning I was thinking to myself, I am being too harsh. There is only so much a doctor can do and that there must be a way I can reach them. That is get them to understand what they suggest and reality for a person with a disability are two different things.  Then I read "Disabilities Can Teach Us How to Live" by Richard Senelick MD in the Huffington Post, and came away deeply depressed. See: http://www.huffingtonpost.com/richard-c-senelick-md/joshua-prager-ted-talk_b_3839547.html  Senelick is a prolific writer,  has his own website, richardsenelick.com, and is the Medical Director at the Rehabilitation Institute of San Antonio (RIOSA). According to Senelick's website since he began working at RIOSA he has been on "a journey of advocacy and education for people with disabilities". When I read this I was not encouraged. I was just sad. I get a sense Senelick is skilled clinician but has no conception the world is a hostile place for people with a disability.

Let me add some provisos to my gloomy assessment of Senelick. I assume Senelick is a good clinician and advocate for his patients. I have not read any of Senelick's articles or books beyond what I accessed at his website. Perhaps his words in the Huffington Post article mentioned above were changed by an editor. Maybe he wrote in my estimation one questionable article and the corpus of his work is excellent. But based on this lone article I am not impressed.  Senelick was inspired to write the Huffington Post article after seeing a TED Talk by Joshua Prager. See http://www.huffingtonpost.com/joshua-prager/ted-talk_b_3839143.html I do not Prager's talk. I do not like Selenelick's resulting article. I object passages such as the following:

The truth is that many of the things that enrich and provide quality in our lives are the same for able-bodied individuals and for people with disabilities. But society doesn't see it that way. Many, if not most, people assume that someone with a severe disability couldn't possibly have the same dreams and aspirations that they do. Think about it. One minute Joshua Prager was able-bodied, strong and walking the streets of Jerusalem, yet in a millisecond he became a severely disabled form of his prior self. Did his dreams, aspirations and the things that brought him joy change? No, the dreams are there, but the ability to achieve them is impeded.

Senelick makes a good point--people with and without a disability have the same basic needs and aspirations. A family, a good job, a house, and friends. A casual reader will undoubtedly think the "ability" to achieve one's dreams are "impeded" by a physical deficit. Heavily implied is that Prager is inspiring because immediately after his spinal cord injury he was completely paralyzed and now can walk with a cane. I see nothing inspirational in this. I perceive Prager to be lucky in having an incomplete injury. I speculate cutting edge protocols were performed by EMS workers after his traumatic injury and that he had excellent rehabilitation. Inspirational is about the last word that would cross my mind. Prager, as all TED Talk speakers do, had a great story to tell. And like all Ted Talks speakers Prager was photogenic. 

Senelick went on to note that: 

If something happened to my wife, I suspect there is some woman out there who would meet me for a cup of coffee at Starbucks. Now, if I have a stroke, has the pool of women willing to have that cup of coffee narrowed? You bet it has. I may feel like the same person in my head, but my disability narrows my social opportunities. My peer group initially shows interest and then slowly disappears. 

Senelick is correct in stating in the days and weeks following a SCI people are surrounded by friends and family. But over time people fall by the wayside. This is too often an inevitable result of a SCI. Life post SCI simply takes a different direction. Rare is the person with a SCI that goes back to the job and home one had before an injury. The reasons for this can be simple or complex. The point here is life post injury is radically different in a multitude of ways. The primary reason this is the case s the social response to disability and ingrained social biases we do not as a people question. Senelick is also correct in stating "disability narrows social opportunities". We may live in a 23 year old post ADA world but access to mass transportation and accessible housing is problematic at best. Add in a heaping dose of stigma, flavor it with rampant unemployment and one acquires a new stigmatized identity. This has nothing to do with medical care or level of injury. This to me highlights what Senelick did not state: paralysis is primarily a social disease. And I am not referring to STDs.

One more quotation: Senelick states:

we all live for our future prospects. No matter how good our lives are at the moment, we like to think about our next vacation, when our book will be published, or something as simple as our plans with our children for the next weekend -- maybe the beach. Catastrophic injuries and illnesses may bring a sudden halt to an individual's or family's plans. Once the physical part of rehabilitation is complete, how do we provide a "prescription" that allows the person to make a successful transition into areas that give them future prospects? It is not always easy to align your future with your abilities.

I have the "prescription" Senelick seeks. Let us have a national discussion about the barriers people with a disability encounter. Let the next President of the United States in his inaugural address state by the end of his term he vows to insure every bus, train, plane, public school, university, work place, and voting location is 100% to all Americans with disabilities. Let this President state that there is merit to the disability rights slogan "nothing about us without us".  To this end, the President will be sure to appoint at least one person with a disability to every important branch of the government and committee in the Senate, House, and even the Supreme Court.  When I hear this sort of wildly ambitious Presidential address to the nation I will know I am equal to my bipedal peers. Sadly I doubt I will live long enough to hear such a speech. Indeed, I doubt my son's future grandchildren will hear such a speech. 

Martin Luther King I Have a Dream: But I Despair

Over the last week I have read quite a bit about Martin Luther King's famous speech "I Have a Dream". I listen to this speech at least once a year when I feel a sense of hopelessness overcoming me. King was a brilliant orator and I find his words moving at a very deep level that touches my soul. In recent days I wanted to write something about King but words have failed me. Thus I was delighted to read a great post by the Disability Rights Bastard. See: http://disabilityrightsbastard.wordpress.com/  He wrote that he weeps : 

when I re-read Dr. King’s speech. In particular, I weep reading passage:

“One hundred years later, the life of the Negro is still sadly crippled by the manacles of segregation and the chains of discrimination. One hundred years later, the Negro lives on a lonely island of poverty in the midst of a vast ocean of material prosperity. One hundred years later, the Negro is still languishing in the corners of American society and finds himself an exile in his own land. So we have come here today to dramatize an appalling condition.”

I weep because when I replace the word ‘disabled’ for ‘negro’ things are truly looking sad. Not just in the United States but in all the Western countries where I know disabled people – not to mention third world countries. In the intervening 50 years we truly have not come far when it comes to segregation, discrimination, poverty and misery for disabled people.

As a group we have poorer education than average, we have far poorer health (on top of our disability), we earn less money, we have a poorer social life and most importantly, we have much less access to things in our societies that others take for granted. Services are off limits for many disabled people. Stores, cinemas, museums, police stations, yes even hospitals are often off limits for those of us with different kinds of disabilities.

This eloquently highlights why at times I am overwhelmed with despair over the lives of people with disabilities. Of course no one will ever put a burning cross on my lawn and I do not expect to be assaulted simply because I use a wheelchair. But disability based discrimination is rampant and takes many forms. Discrimination can be blatant; for instance, a restaurant employee can tell me "no wheelchairs" or a stranger can approach me and tell me they would rather be dead than paralyzed. Subtle forms of discrimination I have experienced assume that I am physically incapable of performing mundane tasks or that I am both physically and cognitively disabled. While I am energized by my first week of class at Syracuse University, like the Disability Rights Bastard I am not optimistic. I am not optimistic for a particular reason: people with a disability are hopelessly splintered into competing and antagonistic groups. People who are blind I am told are divided between cain and guide dog users. When I write about the social implications of adaptive skiing or biking some in disability studies scoff at me and tell me I have a privileged body. People who are deaf refer to wheelchair users as the chrome police only interested in ramps and wheelchairs. This must change but I do not see this happening any time soon. In line with this thinking Disability Rights Bastard wrote:

For a long time I have wished that we could gather enough people to engage in a march on our respective capitals. That we could be enough people to form a crip pride parade and proudly display our natural diversity. Where the wheelchair users held signs about “standing up for your rights” where the blind were wearing t-shirts saying “Blind is beautiful” where the folks with learning disabilities shouted: “I know things that you will never learn” to the tune of the deaf singing songs of their freedom. However, I don’t have high hopes for any of that to happen. We are moving towards a world where it is survival of the fittest and where money talks. If anything we are heading for a cut-throat world where the so-called weak are going to be culled and there will be no room for individual differences.

The weak are already being culled. In fact the weak, the deformed, the crippled, the different are not even being born. My good friend and colleague Stephen Kuusisto wrote at Planet of the Blind about De Facto Eugenics. See: http://www.planet-of-the-blind.com/2013/08/de-facto-eugenics.html Kuusisto prefaced his comments with a long passage from Andrew Solomon's critically acclaimed book Not Far From the Tree. Much lip service is paid to the idea of choice. The myth in American culture is that we are free and independent thinkers. We are in charge of our own destiny. We are autonomous beings. This myth plays into much of what bioethicists write about. We value concepts such advance directives, informed consent, autonomy, and personhood. This is great in theory. But as Kuusisto points out a naivety exists. When a woman is given a prenatal diagnosis for Down Syndrome is she really given a choice? Theoretically a pregnant woman has the right to end or continue her pregnancy. Yet Kuusisto correctly observes "prescriptive abortion is the norm".  Last I checked nationally 93% of positive prenatal tests for Down Syndrome result in a terminated pregnancy. What if a woman chooses to bring a pregnancy to term? She is considered a religious fanatic or a contrarian that selfishly brings a person into existence who is not capable of making an economic contribution to society. Welcome to a brave new world. Kuusisto chilled me to the bone when he wrote "there is no need for Eugenic legislation in our current health care system" and that "radical decisions have already been made". Theses radical decisions are couched in dense academic prose by utilitarian philosophers such as Peter Singer and Julian Savulescu. Bioethics as a scholarly field seems to be enamored with utilitarian philosophers. I find this deeply troubling. So next October when I go to the American Society of Bioethics and Humanities meetings I will get to see and hear Julian Savulesco give a key note talk reserved for widely respected thinkers in the field. Yes, I will also hear Rosemarie Garland Thomsen give a talk as well but she is clearly on the B team in my estimation. The mere fact Savulescu was asked to speak and given the biggest platform humanly possible troubles me because as Kuusisto put it "radical decisions have already been made". Those radical decisions I know do not involve respect for my crippled body. Those decisions already made are a threat to me and all people with a disability. 

Big Trouble: I Dare to Take on Inspiration Yet Again

All my life people have a penchant for giving me nicknames. In my teens one nickname stuck--trouble. I would enter a room and one friend would always remark in a slow drawl "Here Comes Trouble". With each word his voice would rise often prompting laughter. I suppose I was trouble in part because I had a penchant for asking a lot of questions. I simply did not believe what I heard or read. Then and now I do not accept the status quo--I question everything. Today I am going to do something that will get me in big trouble. I am going to take on the concept of inspirational. Whenever I deconstruct the larger meaning of inspirational or worse yet the cure industry associated with spinal cord injury, I know I am going to get slammed with email that borders on hateful. I am sorry but I sometimes cannot keep my mouth shut. Today is one of those days.

A story is spreading quickly in mainstream news outlets about a young paralyzed bride who walked down the aisle on her wedding day. Here are the bare bone facts. Stevie Beale married Jared VanAusdale earlier this month. Beale was paralyzed in a car crash in 2006 that killed her friend. After Beale became engaged months ago she began to focus on a single goal--walking down the aisle in her wedding dress. She accomplished this goal. There is no question Beale looked gorgeous on her wedding day. She succeeded in achieving her goal of walking down the aisle. After the couple exchanged vows videos on You Tube and multiple news outlets show Beale being carried by her husband in her wedding dress. This is through and through a Hollywood like production that the wedding industry capitalizes on. It is romantic in the extreme yet I refuse to provide a link to the videos that abound. I have no doubt most people who saw the short clip of the bride walking down the aisle were teary eyed. Beale and her husband are photogenic and attractive people. I wish them nothing but the best. I am happy for the couple and especially for Beale who set a goal and achieved it. 

Here comes the proverbial but: I do not like the videos or the way the mainstream news media has framed the story. My problem is not with Beale and her husband. Not at all. Instead I object to the way her wedding day is portrayed. The word inspiration is being used in virtually every story. I read headlines such as "An Inspirational Walk Down the Aisle" or "Beauty Exists" or "Dreams Come True" and cringe. To me Beale is no different that any bride. The way she moves down the aisle is meaningless to me.  The mainstream press however relies on an antiquated notion of paralysis and disempowers Beale. For example, Today.com wrote Beale was devastated by the death of her friend and paralysis. The story wen on to note "once a softball player, gymnastics teacher and soccer coach, she questioned what she would do with the rest of her life when the activities that had defined her were no longer physically possible". This is simply wrong and relies on ignorance. I am sure Beale's wondered what life would be like post SCI--all people do. But the idea sports or physical activities are no longer possible ignores the fact adaptive sports are equally enjoyable. Beale is quoted after her injury that she "thought I was doomed to my parents house, to never have a boyfriend, or never get married. I thought I was going to sit at home and rot away". I understand this concern. I had similar thoughts myself in 1978. But no one asks why? Why should any person who experiences a spinal cord  injury worry they will rot away? People rot away because society refuses to accommodate difference--in Beale's case using a wheelchair. Utterly lost is the fact American society remains hostile to the presence of people with a disability. A powerful troika prevents too many people like Beale post SCI from leading a rich and rewarding life: 1. A lack of accessible housing. 2. The lack of accessible mass transportation. 3. Rampant unemployment. To these three variables one can add stigma, social isolation, and the belief it is socially acceptable for a paralyzed person to spend the rest of their life feeling sorry for themselves.

The focus of the mainstream media was what I would expect: it is simply a feel good story. No real questions or issues were discussed that directly affect the lives of people who experience a SCI. Every story relied on an emotional reaction. Paralysis is considered to be an individual tragedy. I see no tragedy in paralysis--it is a physical deficit the vast majority of people adapt to over time. Of course no one wants to be paralyzed, myself included. And yes such an injury changes the direction of one's life. But so do many other life changing events. Think divorce, death of a parent, birth of a child, drug or alcohol abuse, employment or lack of employment etc. The real problem Beale and her husband will face are not glamorous and will likely never be discussed in a mainstream newspaper. The problems I am referring to are not sexy nor do they prompt an emotional reaction. Here I go back to my troika of a lack of housing, transportation, and employment. These issues require some real thought and a re-evaluation of disability in the broadest sense of the term.  Until disability rights and civil rights are assumed by all people to be one in the same stories such as Beale's will continue to be published. Such stories ignore the nitty gritty issues that are barriers for Beale who obviously wants to lead to a rich and full life. 

There is another  aspect of Beale's story that is inherently disempowering. Her husband is consistently portrayed as the reason she could walk down the aisle. In story after story it is noted Beale's husband "brought her back to life" and is well on his way to becoming a saint. What is assumed is that Beale's husband is a saint because he married a paralyzed woman. Only one story I read noted Beale did not meet her husband until well after she was paralyzed. Somehow Beale must have thrived on her own for years. In fact I am willing to bet she is a dynamic human being. Why else would a man ask to marry her? At the end of the day,  I find the entire story simplistic and misleading. Beale's interest in walking, based on what I have read, was restricted to walking down the aisle in a wedding dress. I get this. Many women put great thought into what they will wear on the day they will marry. But this is a very different matter. In fact what I found of great interest was what was not shown. Beale sitting in her wheelchair.  It made me think yet again that a wheelchair could be characterized as a portable social isolation device. And this my friends is the real problem.

Hate Crimes

I will assume most people interested in disability rights have heard about the hateful letter sent to the family of a person with Autism that lives in Newcastle Ontario. I showed this letter to my son earlier in the week when we were on the Canadian side of Niagra Falls. My son was outrage. Steam was coming out of his ears and profanity flowed from his lips. His face even flushed red. Aside from the hateful content what he could not wrap his head around was how the below letter was not considered to be a hate crime in Canada. I read multiple news reports and I understand why this vile letter is not a hate crime. What shocked me though was my reaction. Unlike my son, I read the letter and was not angry at all. I was not shocked. I thought it was a perfect example of ableist hate and social superiority. There is a reason people with a disability live at or below the poverty line. There is a reason people with a disability are unemployed in great numbers. There is a reason people with a disability do not get an adequate education or advanced degrees. The history of disability is as shocking as it is depressing. The legacy of exclusion is ever present and still profoundly influences the lives of people such as myself and others.  Oppression and isolation are a constant.  Thus when I read the letter what struck me was that an ignorant bigot was brazen enough to poorly express what I suspect many others think and feel but do not articulate: disability is a tragedy, a fate worse than death. The presence of people with a disability is an unwanted reminder of what can go wrong with life and the human body. How else do you explain persistent civil rights violations?

I understand the law. Hate crimes are very narrowly defined. Multiple lawyers on various cable news outlets and many newspapers explained why the below letter, though offensive, is not a hate crime. Read the below: 

The Letter

To the lady living at this address:

I also live in this neighbourhood and have a problem!!!!  You have a kid that is mentally handicapped and you consciously decided that it would be a good idea to live in a close proximity neighbourhood like this????  You selfishly put your kid outside everyday and let him be a nothing but a nuisance and a problem to everyone else with that noise polluting whaling he constantly makes!!!  That noise he makes when he is outside isDREADFUL!!!!!!!!!!! It scares the hell out of my normal children!!!!!!!! When you feel your idiot kid needs air, take him to our park you dope!!! We have a nature trail!!!  Let him run around those places and make noise!!!!!! Crying babies , music, and even barking dogs are normal sounds in a residential neighbourhood!!!!!! He is NOT!!!!!!!!!!!

He is a nuisance to everyone and will always be that way!!!!!  Who the hell is going to care for him??????  No employer will hire him, no normal girl is going to marry/love him and you are not going to live forever!! Personally they should take whatever non retarded body parts he possesses and donate it to science.  What the hell else good is he to anyone!!!  You had a retarded kid, deal with it...properly!!!!!!  What right do you have to do this to hard working people!!!!!!!  I HATE people like you who believe, just because you have a special needs kid, you are entitled to special treatment!!!! GOD!!!!!!!

Do everyone in our community huge a [sic] favour and MOVE!!!!! VAMOSE!!!!! SCRAM!!!!! Move away and get out of this type of neighbourhood setting!!! Go live in a trailer or something with your wild kid!!! Nobody wants you living here and they don't have the guts to tell you!!!!!!

Do the right thing and move or euthanize him!!! Either way, we are ALL better off!!!

Sincerely,

One pissed off mother!!!!!

I am one pissed off cripple thanks to my son. I am angry because this is not a hate crime. This is a classic example of how disability is always somehow different. Disability in terms of civil rights raises a level of complexity people are ill equipped to analyze. No powerful symbols associated with disability rights are known to the general public. There is no Martin Luther King of disability rights that touched the hearts and minds of the nation. Bra burning women put feminism on the national news. Equal work for equal pay and gender equality became part of the national conscious. We as a people accepted women have the right to control their reproduction.  We people with a disability need comparable singular moment in time. Those in disability rights are well aware  such events have taken place. But this has not resonated--not even the ADA. Most people have a hazy idea a law was passed a long time ago and it solved all the problems disabled people like me encounter.

I try to put myself in the mind set of a lawyer. The letter above, a lawyer would maintain, is directed at a single individual. It is not hate speech inciting violence against a group or class of people. The letter is not a burning cross on the lawn of a black family in an all white neighborhood. While the letter is vile, it does not meet the letter of the law as a hate crime is currently defined. Canadian authorities are investigating the matter and trying to determine if it falls under a different criminal code. I get this sort of legal thinking and do not like it. I think it is very reasonable to assume the letter was directed at one person with Autism. What the law fails to do is take the next step--specifically the letter could have been directed at any person with Autism or other disability. In my estimation we people with a disability are a distinct an insular minority group. One of the members of my class of people was subjected to a hateful act. The next step, violence, I think is a real concern had the letter not gone viral. I consider this letter to be a threat to me and all people with a disability. It is without question an effort to undermine the civil rights of all people with a disability. Few get this. My thinking may lack the rigor of the law, a separate language I do not speak, but it is at minimum the sign of a much larger problem. The sooner we address the problem, violations of the civil rights of people with a disability, the better off all people will be.