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Sunday, July 13, 2014

More on Our Failure to Educate People about Disability

I recently came across a blog that is funny and poignant. The blog, "What Do You Do Dear" is written  by Mary Evelyn the mother of a young boy who has spina bifida. Evelyn is an Orthodox Christian (a term I am unfamiliar with) and a school librarian. She found out her son had spina bifida during a routine 20 week ultrasound. Since the day their son was diagnosed in-utero she and her husband have had a crash course on not only his physical impairment but about disability in general. Evelyn's level of awareness regarding disability makes for a fascinating read from the point of diagnosis to the present. Evelyn's knowledge base about spina bifida grows daily as does the level awareness about disability in general. I highly recommend this blog. Link: http://www.whatdoyoudodear.com

The most recent blog entry, "A Leak in the System: When a Little Girl Felt Sorry for My Son", made me consigned to the fact I will not live to see the day when people with a disability are truly equal. Not equal by the letter of the law (ADA) but rather by American society. I will never be ordinary.  I will always been seen by others, typical others, as a tragic figure, one who is deeply stigmatized. All people of course do not think this way and I do my best to assert my equality. This is an uphill and sometimes even a losing battle. But fight I must for if I do not who will? I do not fight for myself. I fight for the guy behind me. It has been and remains my hope that no human being experience the sort of discrimination I have experienced. 

I am deeply pessimistic about the future because secondary schools teach children all the wrong lessons about disability. The term "special education" surely does not help the perception of disability. Nor does the continued use of segregated schools and school transportation industry. Too often students with a disability are shunted off to resource rooms. Lip service is paid to "mainstreaming". Basic access is problematic at best. Side accessible entrances to schools abound as do locked doors that place students and disabled adults in a position of dependency. With regard to transportation to and from school and class trips the norm remains for children with a disability to ride the short bus. These are flagrant examples of segregation and I will limit my discussion here as far worse things take place in schools (Abuse, physical and psychological, are commonly experienced by students with a disability). A lesson is being taught  nationwide. Children by the time they are in 1st, 2nd, or 3rd grade have learned a basic fact as it relates to disability: segregation is the norm. Worse, it is socially acceptable. "Special education" buses are routinely referred to in secondary schools as the "retard bus". The consequences of a segregated system are profound. Disability children are taught is bad. This lesson is taught at schools and in every day life. Mothers routinely tell children  when they see a person using a wheelchair "to watch out". I have heard this line for 37 years. Bipedal people routinely leap out of my way as though I am a locomotive going 75mph and am out of control. The fact I am 20 0r 300 feet away form them does not matter. A wheelchair is to be feared. Disability is be avoided at all costs. My wheelchair is thus akin to a portable social isolation device. 

The above thoughts were prompted by Evelyn's post in which she writes about the reaction of a cute six year old girl who saw her son. 

She walked up to my son, as he wheeled in circles outside the sanctuary after church, and planted herself squarely in front of his wheelchair. They studied each other closely. He waved hello. 
And then, without taking her eyes from his face, she said  "I feel sorry for him." 
I felt it more than I heard it. Deep in my stomach, in that place right below my breastbone. The place where I keep all my fears and my sadness. I felt it like a kick in the ribs.
Children ask all sorts of question about my son.
Why is he in that? Why can't he walk? What's wrong with him? Will he need that thing forever?
But questions are easy. For children, questions have answers. 
"I feel sorry for him" is not a question. It is a statement of fact. A revelation. A public disclosure of something I know to be true. Although I fight against it and try to believe otherwise, I know there are many many people who feel the same. Many people who see my son, smiling and spinning and exploring his world, and they feel sorry. They feel sadness. But adults know how to filter. We know what not to say. We know to bottle up. This little girl was a leak in the system.
A system that tells her my son's wheelchair is "very sad."
A system that tells her he is a "poor thing."  
A system that uses words like confined tosuffers from, and bound.
A system that prefers to see people like my son as victims, as recipients of charity, as less-fortunates waiting to be healed, rather than seeing them as neighbors, colleagues, teachers, and friends.
A system that tells her my son smiles "in spite of" rather than simply because he too is a child and has access to all the same earthly wonders that she does. Link: http://www.whatdoyoudodear.com


This breaks my heart. I do not feel bad for Evelyn's son. He is going to encounter far worse prejudice in his life time. He needs to learn how to fight back against such ignorance and bigotry over the span of his lifetime. I do feel bad for Evelyn. There is absolutely nothing she can do to change what she calls the system. She cannot protect her son from disability based bias. Evelyn notes she is only one person--a sentiment that I can related to. I am one person too and I am not afraid to admit there are days I cannot leave my home because I cannot tolerate the inevitable social denigration that comes with interacting with others. But we, meaning we people who reject ableism, must multiply and educate. We must do this daily. It is a lousy job. It is depressing to be surrounded by bipedal hordes who do not know a thing about disability but think they know all. Worse, all they know is wrong. All they have been taught is wrong. This is exactly why the story Evelyn penned is so sad. A six year old with seven decades of life ahead of her is unknowingly a bigot. I have no doubt the girl in question can be educated. I am sure her views can change. The point here is she has been taught and absorbed lessons that inherently destructive to a class of people. She might change her views. She might not if she has no direct experience with disability. For it is that human connection to a loved one with a disability that represents hope for the future. Evelyn ends her post with a feel good story.

Then last week, sitting by the pool with my husband and my splishy-splashy little boy, I heard it again. This time from a teen, maybe 19-years-old. He had seen us there a few times. Today he had a girl with him. A girl he liked. I could tell. He gestured in our direction.
"Something's wrong with that kid" he whispered to her. "Did you see his back? He can't walk. So sad..."
I felt it more than I heard it. And I put my head down waiting for her reply. Her agreement. Her inevitable recognition that yes, my child's life is very very sad.
"It's not sad" she said, looking at my son with so much kindness. "My brother was in the Special Olympics. Nothing sad about it. That kid is cute."
And then my heart turned to mush and I closed my eyes to keep from crying.
I wanted to hug her. I wanted to tell her how rare she is. And how lovely. I wanted to believe she was once a little girl in a gauzy white dress.
More than anything, I wanted to thank her for reminding me that I am not the only one who sees my son for who he is. Unconfined, unbound, human.
I am only one person.
But I am not alone.


Evelyn is not alone nor am I. I am not sure how Evelyn felt after she wrote her post but her words depressed me. Initially I was ready to pump my fist and say "YES!" Then reality set in. Why is the teenage girl described above rare? Why are we human beings so quick to judge others on something as inconsequential as wheelchair use? Really, are we human beings that shallow? Are we that unwilling to open our minds to others who navigate the world differently? Are we unable to incorporate and educate those that think differently and not at the typical, perhaps demanded, pace? The answer to all these questions is yes. By itself this is damning to our educational system and the culture that created and perpetuates it.  I for one will spend the rest of my rejecting such a destructive system and doing all I can to fundamentally change the way people perceive disability.  Education I am sure is the key. We need to do better. All of us must do better. A class of people are actively discriminated against and lives are at stake.  

Thursday, July 10, 2014

Presume Competence and the Failure of Education

When I see a person with an obvious disability I always react the same way: There goes a hard ass who has somehow acquired a disability and has adapted. Some people adapt and thrive others struggle for years. Some will never be autonomous and yet with appropriate social support lead a good life. My reaction to the presence of a person with a disability is well out of the norm. What the vast majority of people think is basic and wrong. Disability is bad. Disability diminishes quality of life. Disability prevents people from walking, seeing, hearing, etc and this precludes a rewarding life.  The focus is never on what can a person with a disability can do but rather all they cannot. This line of thinking makes me shake my head in wonder. How can people be so shockingly stupid.

The assumption people with a disability are incompetent and lead a severely diminished life has been questioned by many scholars--especially by those whose work centers around disability and its social impact on people. To the best of my knowledge Douglas Biklin was the first or among the first to use the phrase "presume competence". This phrase has been at the forefront of my mind for the last year or more because I think it applies to all people with a disability. In a 2012 interview with Biklin he was asked to explain the concept of presume competence". Link: http://www.unesco.org/new/en/education/resources/online-materials/single-view/news/douglas_biklen_winner_of_unesco_kuwait_prize_begin_by_presuming_competence/#.U76AAVY1eDU He stated:

The principle of “presuming competence,” is simply to act as Anne Sullivan did.  Assume that a child has intellectual ability, provide opportunities to be exposed to learning, assume the child wants to learn and assert him or herself in the world. To not presume competence is to assume that some individuals cannot learn, develop, or participate in the world.  Presuming competence is nothing less than a Hippocratic oath for educators. It is a framework that says, approach each child as wanting to be fully included, wanting acceptance and appreciation, wanting to learn, wanting to be heard, wanting to contribute.  By presuming competence, educators place the burden on themselves to come up with ever more creative, innovative ways for individuals to learn.  The question is no longer who can be included or who can learn, but how can we achieve inclusive education.  We begin by presuming competence.

I love the fact Biklin considers presume competence to be the Hippocratic Oath of educators. Sadly, precious few educators share Biklin's belief. It is not just educators who fail to see the many ways people with a disability are competent. Health care professionals and most industries are woefully ignorant about disability and what people with a disability are capable of doing. Physicians, for example, observe pathology first and foremost. Administrators in health care bemoan the cost of caring for the disabled or atypical body. Industrialists refuse to hire people who have a disability. Educators simply do not want to deal with students who do not learn at the prescribed rate. Worse, educators simply lack any imagination when it comes to educating a student that learns differently. Educators teach students to take and pass tests. Tests in secondary education define success.  The business model of education reigns supreme. 

The fact educators fail to focus on what students with a disability can do is a colossal social failure. I observed this raising my son who went to so called blue ribbon schools in New York with sterling reputations. I was bitterly disappointed with what I saw of the secondary school system. The secondary school system nation wide is populated by caring and dedicated professionals who are trapped in a system that is hopelessly flawed.  The educational system is inadvertently destroying the aspirations of atypical students. There is a reason students and adults with a disability feel alienated.  Too few educators presume competence. What educators see is a problem. Students that are atypical are quickly shunted into "special education"--a term I despise. Atypical students and adults with a disability are not "special" but rather merely different.  Special implies an unfair advantage is being given to those who are atypical. This rankles people and undermines what Americans are taught and cherish--all people are equal. Let me tell you I have not been equal since the day I began using a wheelchair. I do not accept a diminished social standing nor the stigma associated with disability and the atypical body. This does not make me popular. Indeed, three subjects I write about routinely generate a flurry of nasty email and comments. First, my opposition to assisted suicide legislation. Second, my opposition to growth attenuation. Third, my stinging critique of the cure industry typified by the exoskeleton. 

There are many great things about blogs and I am particularly drawn to others who like me me push back when confronted with ableist assumptions about disability. Narrow minded and unintentionally destructive ideas dominate education. I observe bias in the university system. I have heard more than one professorial colleague bitterly complain about reasonable accommodations they are forced to make. Extra test time! "I never got extra time" professors proclaim. "This is an unfair advantage". The campus is "over run with students with learning disabilities" is another line I hear often. When I quietly note those pesky expensive elevators and autonomic door openers abound I am told that is completely different.  Such an observation usually ends any discussion because my views are obviously clouded by my disability. When I have such an exchange it reinforces why so few students with a disability get into college and an even smaller number are able to graduate.  The educational system is flawed from start to finish. Given this viewpoint, I read many blogs and scholarly articles about the secondary school system. It is the blogs though that resonate with me. I am not alone. By itself this is gratifying. One blog I read regularly, Star in Her Eye, is written by Heather Kirn Lanier. Link: http://starinhereye.wordpress.com Yesterday Kirn Lanier wrote a post "We're Presuming Competence". This is not the best title. Kirn Lanier insightfully demonstrates the majority of those charged with educating her daughter do not presume competence. What educators see is what her daughter cannot do. The educator that presumes competence is a rarity.  Kirn Lanier wrote: 

If you spend a few years working with special educators and therapists, as we have, and then meet someone who greets your daughter with this presume competence attitude, you realize how radical and rare it is. A year and a half ago, I asked an early interventionist to help us with the significant gap in Fiona’s expressive and receptive communication. As you might know, Fiona is nonverbal. Her expressive communication is limited to pointing, eye contact, facial expressions, maybe twenty rough signs, and a thousand ways to intone her only sounds: mm, um, and hum. But she understands a thousand times more. So I asked her early interventionist to help me create a picture system for Fiona, one where she could point to pictures to express her wants and needs. The therapist was initially enthusiastic, but eventually thought Fiona wasn’t a good candidate. She thought Fiona would “stim” on the picture cards (at the time, Fiona loved to hold cards and tap them against the palm of her hand.) The therapist encouraged a few signs, but didn’t provide much else in the way of augmentative and adaptive communication. Nine months went by. Meanwhile, Fiona just kept learning more and more vocabulary, without the ability to express it herself.
This is an educational and social failure that is shockingly routine--the norm even. While I am spending most of this post blasting the educational system there are educators who get it--those who presume competence.  Kirn Lanier wrote about such an educator: 

She was the first expert I’d met who’d held such a long, wide, generous view of my daughter’s capabilities. So I listened intently to everything the expert said. I listened when she told me that Fiona and I needed a shared language, one that would enable robust, creative expression. (“Right now, you don’t have a shared language,” she said, a sentence that was both true and heartbreaking.) I listened when this woman told me that we needed to offer Fiona multiple parts of speech rather than just a list of nouns, so she could do more than make requests and identify objects. I listened when this woman believed we needed a system with voice output, so Fiona could touch a button and a computer could speak a word. I listened when this woman told me she really, truly believed Fiona could handle something much more complicated than a few dozen picture cards on strips of Velcro (which by that point the early interventionist had provided.)

When I read Kirn Lanier's post I thought about the bipedal hordes that surround me on a daily basis. What most see is my wheelchair. Life in a wheelchair must suck. Being paralyzed must be horrible. I would rather die than use a wheelchair. Many assume I have a cognitive and physical disability. Almost all assume I am not employed. Most presume I have great health care coverage and spend most of life searching for a cure to paralysis. How do I know this is the way bipedal people think? This information is freely shared with me by ignorant bigots coast to coast.  To me, what is at issue is a human rights crisis no one wants to talk about or even acknowledge exists. In Kirn Lanier's experience as a parent she has had to fight to give her daughter Fiona language. I am outraged as a result. In my case I have had to fight for physical access to our social environment. I have had to fight for my humanity as has every person with a disability who rejects ableist assumptions.  The fight for equality has played a prominent role in my life. It has made me hard. It has made me radical. It has made me question everything I was taught as a child. I question the status quo at all times. It has drawn me to previous civil rights movements. It inspired me to read the work of Marx and Engels. It caused a visceral reaction when I read the Communist Manifesto the first time in college. To this day when I read the famous opening and closing lines of the Communist Manifesto I am hooked. A "spectre is haunting" American society. "Working men of all countries, Unite!" I reinterpret those words to mean the spectra of ableism is haunting people with a disability and we must all unite. I just hope to live to see the day when people with a disability stop bickering among themselves and unite with all other oppressed minority groups.  Then and only then will I along with millions of other people with a disability truly be equal. 

Sunday, June 22, 2014

The Disability Blues

Last academic year was without question the most rewarding of my career. I taught honors students at Syracuse University and gave a series of talks at a host of excellent universities. I talked about the lasting influence of Jack Kevorkian on end of life issues and how he preyed on women and the most vulnerable at Columbia University. I talked about utilitarian philosophy and its impact on those with significant disabilities at Yale University. I spoke to residents at Yale Medical school as well about how I was once offered assisted suicide.  I visited New York City and spoke at Cornell Medical College and discussed Clifford Geertz "thick description" of the health industrial complex and the atypical body. I went to the American Society of Bioethics annual meeting in Atlanta and gave a paper on the concept of autonomy.  I organized a one day conference at Syracuse University entitled Lives Worth Living.  The year was in short a whirl wind. A deeply satisfying whirlwind.

I am struggling to adapt to life not being at the same rapid pace this summer. As a result, since class ended in May I have been fighting the disability blues. In retrospect, I wonder what did I accomplish? In the last few months the answer to this question has periodically been nothing. I failed.  I did not influence others. I did not in any manageable way change the lives of people with a disability nor did I influence another scholar.  Abuse of the most vulnerable among us with a disability remains rampant. I read a story about an elderly man who killed his severely disabled son and then committed suicide. He feared after he died no one  would care for his son and was seriously concerned  his son would be abused. I have read stories about forced institutionalization and sterilization. I read about growth attenuation yet again.  I read how more and more students with a  disability are attending university but an even higher number are dropping out in debt and without a diploma. More personally, I encounter physical and social barriers on a regular basis. The other day when I went to the post office a car was parked in front of the ramp. I had to navigate down a hill in traffic to get to the next nearest ramp. I tried to check into a motel last week and the staff continually tried to talk to my son rather than me--the human using a wheelchair.  I could go on but the point is clear. Physical and social barriers to basic social inclusion are the norm.

All of the above gives me the blues--a deep feeling of sadness and difference. I am not typical. I am not normal. I will never be accepted. I will spend the rest of my life demonstrating that I am a human being, a man that should be respected and valued. Few people see the man I think I am. Most see a wheelchair and instantly think of all that I cannot do. This thinking is bizarre to me.  I see a crippled person, a human being with an obvious physical or cognitive deficit, and I think there goes a person that has endured and fought back against the sting of baseless disability based prejudice.  My crippled peers that are out and about are hard asses that have adapted and thrived. But my God some days I am just spent!

This summer I have had too many wasted days. Days of depression where I think the world is hostile and rotten. I cannot leave my home and remain shut in.  Two triggers have heightened my unhappiness. I grow increasingly dismayed by the conference I attended on the Philosophy of Disability at Syracuse University. I met some fascinating scholars but found the philosophy of disability to be so abstract it had no relevance to the real world. Why one need not even have any connection to disability to study disability. The lack of connection made one more objective in the estimation of some scholars. The second trigger was a mere photograph. I have been cleaning out my books in preparation for my move to a small town near Syracuse, NY in August. A week ago I found a photograph of me dated 1969. The photograph was taken just before I began to get sick and present with profound neurological deficits and severe pain. Looking at myself, a typical boy about to go through a decade of misery, made me shake my head. I never think of myself as typical, normal. It was a shock to see myself with a typical body. I was a cute little boy. I was standing near the house I grew up in. I had on jeans and red and blue stripped shirt. I was standing on a scooter I loved. I vividly remember the scooter and shirt--it was my favorite. The picture made me sad. I mourn for that typical child. I forget he ever existed. What I remember of my preteen and teen years are pain and suffering. Sure I recall the love of my parents and the dedication to my care. Without their fierce advocacy I would have died. But the reality is pain was my best friend for a decade. Pain left an indelible memory. So too did my medical care. Three massive spinal cord surgeries, dozens of spinal taps, life on the neurological wards of 16 morbidly sick kids most of whom would die, nine months in various body casts, three months post sclerosis surgery flat on my back not allowed to get out of bed, taking a boat load of prednisone and decadron, my body blowing up like a balloon with the typical moon shaped face, lots of demerol that took the edge of pain but did no eliminate it, etc. The tale of my childhood is long and miserable. The end result, a crippled atypical body that commands no social respect and a life in which I am forced to continually defend my right to live.  The worst part of my life is not the the blatant bigotry I encounter. The most damaging part of my life (where my concept of self in a Goffmanesque sense is challenged) is engaging others scholars interested in disability that consider disability to be a mere intellectual game or academic puzzle. These scholars mean well no doubt. They care about their work but as I learned in Syracuse it is divorced from the real world. I cannot do this. It is in part why I feel estranged from disability studies. I cannot separate disability based activism from my work as a scholar in disability studies, bioethics and anthropology. That is who I am.

In search of solace I have been doing a lot of reading. At the conference I met Simo Vehas who I liked very much. Our meeting inspired me to re read a book he and two other scholars edited: Arguing About Disability. Last semester I required my students to read the Introduction and two other chapters. One concerned cochlear implants, the other on the preference for deaf embryos.  In retrospect I should have had students read Jackie Leach Scully's chapter "Disability and the Thinking Body".  Scully discusses the difficult transition in the way disability is framed. Once the domain of the hard or medical sciences disability is now perceived by some as a form of human variation in a Darwinian sense. Disability for me is an emancipatory movement tied to traditional notions of minority rights issues. But as many know disability touches upon a diverse number of fields and cannot be perceived in isolation. The challenge disability presents in the words of Scully is it "offers new perspectives on issues such as autonomy, competence, embodiment, wholeness, human perfectibility, finitude and limits, the relationship between the individual and the community, all of them notions that pervade every aspect of our lives, issues with which moral philosophy and bioethics constantly grapple. It recentres the body within philosophical thought.

My anthropological spin on the above is that a cultural divide exists between bioethics, academic disability studies scholars, and philosophers who do not grasp the gritty reality most people with a disability encounter on a daily basis. Sure many scholars with a disability work in these disciplines and I include myself here. This life experience however does not necessarily lead to enlightenment nor does it in all cases provide scholars with unique insight. We have a real problem that has yet to be resolved. I have put a great deal of thought into this and have been unable to find the words to express it. Again, Scully comes to the rescue. Here is the heart of the problem from my perspective:

philosophical work on disability is hampered by lack of answers to some very basic questions about what it is like to live as/with an anomalous body. The challenge of  unusual embodiment is that it poses hard questions of justification to normative standards, especially to the normative ethical evaluations that are performed from a non-disabled perspective (that is, most normative ethics). I would argue that the philosophical engagement with bodily difference will not make much progress unit the data base of empirical, experiential and scientific knowledge of it is expanded. And this relies on philosophers, social scientists and life scientists taking an interest in disability as a phenomenon worthy of study rather than a problem to be dealt with.

Major props to Scully. She hit the nail on the head. Problem one is philosophers talk to other philosophers. Disability studies scholars talk among themselves and are fighting to establish disability as a legitimate avenue of research. Bioethics scholars and those in the life or hard sciences are just as insular. There is no multidisciplinary effort to establish disability as a valued academic inquiry. The result is the existence of people/scholars such as myself is problematic. The problem (people with a disability)  is individualized and scholars fail to address the systemic or fundamental flaw that is blatantly obvious to me. That flaw being the failure to acknowledge my humanity and civil rights. This plays out in the formation of a conference at Syracuse, a university widely respected for producing serious and important scholarship in disability related fields of inquiry, that presented profound access issues. In individualizing disability as a problem to be solved enables ingrained exclusionary practices to continue. Another example should suffice. For the last year I have advocated for the inclusion of disability related topics and disabled scholars at the American Society for Bioethics and Humanities annul meeting. Last year I was the Ombudsman for disability at the annual meeting. In looking back at my work and the great deal of time I spent advocating for the most basic forms of access at the ASBH meetings I accomplished virtually nothing. I have spent approximately ten days trying to do something very simple. Reserve a room at the discounted rate given to ASBH members in San Diego. This should take no more than ten minutes on line. However if a scholar with a disability wants to share a room and have a roll in shower (a standard request) the work involved is significant. It took me many phone calls and emails to the ASBH and hotel offices to reserve room. The reason for this is obvious: I am a problem. My attendance is a problem. An ADA room is a problem. No one wants to think of disability as being more than an individual problem. This plays out reserving a room, attending a conference and publishing and presenting papers. Everywhere I go I am a problem.

I have news for the world: I am not a problem. I am a human being. All people with a disability are not a problem. When all the academic discourse is stripped to its barest essential what philosophy, disability studies and bioethics should reveal is that we people with a disability are merely human. Humans that in the face of great social and physical barriers and significant bodily deficits become ever more human. In fact our human connectedness with others only heightens the human to human bond. A bond that calls into question cherished notions of autonomy and rugged American individualism. Hence my existence is a threat. My presence at academic meetings is unwanted and odious.  I represent nothing more than a problem. My humanity thereby is denied. No wonder I often feel alone. No wonder melancholy is sometimes my best friend.

Friday, June 20, 2014

Clarion Inn at Syracuse: Incompetence Abounds

On Wednesday my son Tom and I took a quick trip to Syracuse. I wanted to show Tom the Syracuse University campus as well as where I will be living when I move. I did not want to stay at the Red Roof Inn where I stayed many times last academic year. I wanted a slightly better environment. To this end I reserved a room at the Clarion Hotel in Syracuse. The on line reviews were largely positive, it was not too expensive, and had a free continental breakfast for my son's bottomless stomach.  Better yet I was able to book a room that had two beds and a roll in shower. Here is a screen shot of the Clarion Inn reservation information:


The screen shot is poor quality and likely cannot be read. It states in part "2 double beds accessible. Also included mobility and hearing accessible, Roll in Shower, ground floor".  Perfect I thought. The days of sharing a bed with my son are long gone. We left for Syracuse very early. We arrived in time for lunch and I had a great time showing him around campus.  I also took him to Wegmans and he was massively impressed. In short we had a great time and by late afternoon were ready to check into the Clarion Inn. The second I walked in the door I knew we were in trouble. The two employees at the desk looked at me with trepidation. People who use a wheelchair and travel know this look. It is as though you have a bomb on your lap and the employees are fearful it will explode at any second. I identified myself and the employee at the desk ignored me. After I told her my name she looked at Tom and asked him for a credit card. Tom looked at her, then looked at me and remained mute. I put on my stone face and handed over my credit card. She ran the charge and did whatever needed to be down to check us in. She then tried to hand my credit card back to Tom. He did not reach for it and stepped back making it impossible to reach him. I put my hand up and wondered when did I catch the plague. I put the credit card away and the employee then tried to hand Tom the keys and directions to the room. We had driven around the building prior to entering the lobby and noted multiple entrances--most of which inaccessible. I asks very clearly what entrance was accessible and was annoyed in the extreme.

I navigate to the entrance on foot and Tom drove the car around the building. We arrived at the entrance at the same time. There were four steps to enter the building. We both turn around and head back to the check in desk. I am not impressed. The employee that continually tried to engage Tom is gone. A very young employee is alone at the desk. She has absolutely no clue how to help  me. I am quick to ask for the manager at this point.  Two employees emerge from the back. Neither employee identifies himself or herself as being a manager.  There are now three employees at the desk and all appear stunned I am present. It is as though a Martian has just entered the lobby. I was a problem that was solved a few minutes earlier. My presence was clearly unwanted. A man starts to furiously type away at the key board and a discussion ensues about which rooms and what entrance is accessible. No one has a clue and massive confusion reigns supreme. I am angry; however I do not raise my voice or change its tone. My son was furious and told me he would wait outside. I wait as more keys are struck and I am told there is an accessible room but there is no roll in shower. This is contradicted by another employee who says there is a roll in shower but it has only a king bed. No one is sure where the accessible entrance is. My confidence in anything I am told reaches zero.

I ask again about the accessible entrance and two employees contradict each other when they answer at the same time. They then contradict each other about the room number and location of the supposedly accessible room. I give up. At least 15 to 30 minutes after I arrived I cancel my reservation and walk out in frustration. We did not see a room or the inside of the hotel. No apology is offered. Off the Red Roof Inn we go. Upon arrival we are warmly welcomed and the manger jokes that "my room is available". She throws in a AAA discount, gives my black lab Kate a bone and offers her some water. Check in takes all of three minutes. The manager addresses me at all times. She has ignored my son who stands at a respectful distance. When ready to go to the room I introduce her to my son. They great each other warmly and off we go. I am routinely impressed by the Red Roof Inn. As always, the shower head is down in the room that has, gasp, a roll in shower! The staff in every Red Roof Inn I have stayed in knows the location and features of the accessible room instantly. Check is smooth and simple--normal if you will. In fact I almost feel like a typical bipedal traveler.

In the last year I have traveled a great deal. I have stayed at high end hotels. I have stayed at some real iffy motels in questionable neighborhoods. Generally speaking I have had far more positive experiences at budget motels over high end hotels. Obviously exceptions exist. I would speculate this is a numbers game--a matter of basic economics. People with a disability are in overwhelming numbers poor. The few that can afford to travel surely stay in budget accommodations. High end hotels without question do not get nearly as many visitors with a disability. As a result, budget motels like the Red Roof Inn are extremely responsive and familiar with accessibility. Other chains I avoid. The Clarion Inn is at the top of that list now.  I know certain hotels to avoid--some of them are top notch hotels. The Grand Hyatt and the high end Marriott for example are typically terrible in terms of access and the reservation process is time consuming.

In spite of the needless trouble we encountered we had a great trip. My son was relieved to see that I am not going to be living in a hovel. He saw the town I am living near and was impressed. The surrounding area is gorgeous and I am literally living on a lake a mere 30 minutes from the Syracuse campus. Here is proof the location the lake I will be I will be living next to is lovely.




The highlight of our trip took place in Roscoe, New York on our way home. We visited Prohibition Distillery that sold bourbon and vodka. We ate a sub made at the local sandwich shop that was delicious. Better yet, we ate outside and Kate ate our bread scraps. We then went to the distillery and had a sampling at the that we shared. My son had bourbon, I had the vodka. Wow. Best vodka I have ever had and the bottle design was cool. Such is my life. Never ordinary and many highs and lows. When we got home I can assure my readers I had a stiff drink--in fact I will confess I had more than one and went to bed a happy man.







Monday, June 16, 2014

Chronicle of Higher Education Story Features Me on the Lack of Access at Academic Conferences

In the Chronicle of Higher Education a story appears about the lack of access at academic conferences. Unfortunately the article is behind a firewall and is only accessible to subscribers. The Chronicle of Higher Education reporter that wrote the story was kind enough to provide the following link that will provide access to the story for the next 24 hours. Link: http://chronicle.com/article/Indifference-Toward-Disabled/147149/?key=S2J7KQNoMixHMCowMTpLMTkGPHxvMhh7ZnUebSwnbllWFw==  Attending an academic conference is never easy for a person with a disability. All academic conference are expensive and are to an extent designed for privileged academics. Conferences routinely involve travel which by itself is highly problematic for people with disability. Airlines are notoriously bad when it comes to the most basic reasonable accommodations.  Thus even before a scholar with a disability enters the conference hotel he or she has already gone through a gauntlet simply to attend. I for one often arrive tired, hungry and pissed off because of travel related hassles. This says nothing of the utter lack of information provided by hotels and academic organizers about access in a city I have likely never visited. Once settled in at the conference hotel I then get to insure the room I will speak in is accessible--never a sure thing.

Last night I was speaking with my son about the Chronicle of Higher Education story and thought I am to a degree privileged. I am an established scholar and when the lack of access goes from difficult to impossible I know people that I can call who will help. But what I wonder happens to a graduate student or a recently minted PhD trying to jump start his or her career? They will assuredly encounter barriers that cannot be eliminated. And this is exactly why I advocate for myself. Sure it is to an extent selfish. But the reality is I am far more concerned about the person with a disability that will follow me in the years to come. I do not want that scholar to encounter the same barriers I did. It is not about the present for me but the future. It is my hope that future is one in which scholars with a disability do not experienced discrimination or encounter needless barriers.

Saturday, June 14, 2014

Walking is Over Rated

I never think about walking. Not in my dreams nor when I am awake. Walking has no relevance to my life. I do not miss walking one iota. In fact I think more about the way I push my wheelchair and use the gears on my handcycle. If people ask me about walking, and strangers often do, I emphatically state walking is over rated. This is a sure fire way to undermine any discussion of typical ambulation. When I shut down this discussion I also eliminate any reference to the myriad of ways in which the mainstream media glorifies walking. Here I refer to the silly, ineffective, impractical and expensive ways bipedal people dream of making paralyzed people walk again. Believe me when I state we paralyzed people do not think nor care about walking. It is a discussion and thought that does not enter our minds.  If you do not believe me I suggest you visit the website Walking is Over Rated. Link: http://www.walkingisoverrated.org  This is not the best website--great title but the content is spotty and dated. However it does get the point across--walking is over rated. 

In an effort to put bipedal people in their place I read with delight a post by Red Nicholson entitled "Why the Obsession with Walking?" Link: http://attitudelive.com/blog/red-nicholson/opinion-why-obsession-walking Nicholson correctly asserts the obsession bipedal have for getting paralyzed people walking has reached a fever pitch recently.  I watched and laughed when I saw the World Cup exhibition that had a paralyzed man strapped into an exoskeleton kick a soccer ball. This was anti climatic in the extreme and thankfully was quickly dismissed by the mainstream media. This came as a relief to me. The exoskeleton is the latest and most expensive useless means to get paralyzed people to walk again. When I read stories about the exoskeleton I cringe. Nicholson hits the nail on the head when he wrote: 

Believe me when I say this: my wheelchair is a very capable tool and to be honest, the last thing I want is to be strapped to a District 9-esque robot and become a puppet in some corporation’s half-baked execution of an obsession with making the non-walkers walk again. Because the trouble with this narrative, if it wasn’t already obvious, is that the journalists who write these stories are unwittingly invalidating a unique way of life for millions of people around the globe who are really happy with their wheelchairs. The implicit message from the media seems to be, "Wheelchairs suck! Walk in this robot instead!

This is the image we are left with: 




Nicholson correctly notes the problem with such images and inventions such as the exoskeleton is that people who use a wheelchair do not dream or yearn to walk. We are too busy with our lives. Work, family, marriage, child rearing and friends occupy our time and thoughts. Worse, when we paralyzed people do not share or express an interest in the obsession with walking there can be a severe backlash.  We are thought to be bitter party poopers or delusional and perhaps mental ill. Surely everyone wants to walk! Sorry, but no. I do not want to walk. I do not miss walking. 

Nicholson concludes that he has: 

no more desire to be strapped to a robot than I do to go swimming with great white sharks. In truth my life as a wheelchair-user is a very good one. I do a lot of great things and know a lot of great people. So hey, able-bodied media: quit making me feel like wheelchairs are a shitty, sub-par option. Stop beating your exoskeleton drum. And most of all, let go of your obsession with walking, because it’s totally overrated. 

I would like to second Nicholson's observation and take the critique one step further (pun intended). The exoskeleton is inherently misleading and its benefit to paralyzed people has not been established. The exoskeleton is Department of Defense research detritus used by profiteers who sell the dream of walking to newly paralyzed people who cannot imagine life as a wheelchair user. As such the exoskeleton is symbolically and practically destructive to a newly paralyzed person. So I would urge paralyzed people to boycott this device! Screw the exoskeleton. Screw walking! Get me a good wheelchair, an excellent wheelchair cushion, and some adaptive sports equipment so one can remain in excellent physical health. Better yet, get paralyzed people a job. Forget about the exoskeleton. Take those funds, the millions of dollars of potential waste, and put a job placement office in every rehabilitation facility. Empower paralyzed people to do what we Americans love to do: work, make a decent living, and be autonomous. Own a home even. Have a family. Get married. In short, be ordinary. Walking is simply not required for all this nor should it be glorified. 

Friday, June 13, 2014

The Ashley Treatment Rears its Ugly Head

I was having a good day until I had an early lunch. As I ate I checked out links on Facebook and came across a link provided by David Carlson of Disability Rights Washington (DRW). Carlson, as those familiar with the Ashley X case will know, was a lawyer for the WPAS now DRW. He has been and remains involved in the legal implications of growth attenuation and the so called Ashley X Case.  He provided the following link to a deeply disturbing video from New Zealand:  http://tvnz.co.nz/sunday-news/charley-girl-video-5974811

I decided to provide the link rather than embed the video because I find it disturbing and objectionable. The video is New Zealand version of the Ashley X case. And as hard as it is to imagine the parents actions in New Zealand are even more ethically questionable. The New Zealand case concerns Charley Hooper, a child severely disabled as a result of an accident during a home birth. The mother who is featured prominently, Jen Hooper,  parrots much of what Ashley X's parents stated in 2007 and 2012.  Charley Cooper was given high dose estrogen to attenuate her growth at the age of four. To obtain the estrogen the family traveled to South Korea. No hospital in New Zealand would permit such a prescription.  The rhetoric spewed but Jen Hooper is offensive and does not differ substantially from what Ashley X parents have stated repeatedly. Hooper, like Ashley X parents rely on emotional arguments. Hooper insists she is not a monster and has gone public because she is concerned about the back lash from those opposed to the Ashley Treatment. Hooper's primary focus is on infantilizing her daughter Charley and insists there is no hope. Charley has the brain of a new born Jen Hooper states repeatedly. Charley's brain is static and will never change. Hooper insists Charley lacks any potential for intellectual growth or personal awareness.  Hooper also mimes transhumanists in maintaining that if her daughter has the brain of a new born her body should remain as child like as possible. She gushed her husband Mark "and I were like Oh my God, this is amazing if we could do this and always be able to carry her like the new born baby her brain will always be". Hooper has no reservations and stated "I'm damned proud of what we've done. I'm incredibly proud of what we've managed to achieve for our little girl".

As I sat and watched the 17 minute news program I was stunned. The news program has been actively covering the case for a while. A film crew accompanied the family to South Korea where after a 20 minute consultation with a physician the parent were given a prescription for high dose estrogen. If Jenn Hooper is to believed this took place when Charley was four years old.  The news program shows Hooper putting the first hormone patch on her daughter in what appears to be a mall. Apparently in New Zealand once hormone therapy has begun abroad it is legal to continue.  Charley Hooper has been cared for by endocrinologist Paul Hofman who stated "the use of high dose estrogen to make the child smaller has justification certainly in the context of this family as they wanted to be able to look after the child for longer".  Remarkably, last year at age seven Charley had a hysterectomy at Starship Hospital in Auckland, a procedure deemed reasonable by the Auckland Clinical Ethics Advisory Group. As I understand it, this was the same group that refused Hooper's request for the Ashley Treatment.

It will be interesting to see how this story plays out. The story is a month old. This is the first I have heard of it. A quick google search revealed no news stories outside of New Zealand have been published. I am sure this will change. I have no doubt Ashley X parent will have something to say. Perhaps Doug Diekema or Norm Fost will comment. While I am disturbed by this story, I think the general public will be able to see throughout the emotional manipulation and realize there is no factual basis for growth attenuation. Hooper, like Ashely X parents, are extremists. As zealots they do not question their actions.  Most parents I know regularly second guess their decisions. Indeed, the more important the decision the more angst and thought parents put into a decision that will have a profound impact on their child. The assuredness Hooper and Ashley X parents possess is well outside of the norm. In Hooper's case traveling with their entire family to South Korea with a camera crew is far from typical and from my perspective reeks of self promotion. Not many parents are convinced they are correct and the entire New Zealand medical community wrong.  To me this is ego run amuck.  It is my hope others will see this. I also hope viewers will grasp a more subtle issue: the medical community is all to willing to perform such ethically questionable treatment on those with severe cognitive and physical deficits. While skilled within the medical sciences, health car professionals in general have a very poor understanding of disability--especially severe disability that involves both physical and cognitive deficits.

All is not gloom and doom. I was thrilled to learn the Auckland Clinical Ethics Advisory Group refused the Hooper's request for the Ashley Treatment. They concluded:

We are not satisfied that the evidence for either he social or medical benefits of the proposed interventions are clear enough to out weigh the possible burdens to this child. There exists an individual right in these patients to be protected from undue risk. There are well developed ways to manage severely disabled people in New Zealand.

I applaud the Clinical Ethics Advisory Group but I wonder if they really get it. I also sincerely doubt there are well developed social supports for severely disabled people. But this not want  I want to be the take away message from this post. Disability in the broadest sense of the term is a social identity. That is the presence of a disabled person prompts a social response. For me, the reaction to my presence as a wheelchair user can lead to a wide range of responses--some positive others overwhelmingly negative. The point I am trying to make is that disability is a social state of being.  The more profound and obvious the disability the stronger the reaction is likely to be. Those without a disability will quickly wonder and question how can a person with a profound disability remain independent, self reliant and autonomous. These are mythic and valued American ideals. They also reflect a narrowness of thought and an utter lack of imagination when one has a different or atypical body. Autonomy as many know is fleeting. We enter the world utterly dependent on others and many will be dependent upon loved ones at the end of life. The lack of autonomy makes us no less human. Sadly those that are not autonomous and will never be autonomous, people like Charley Hooper and Ashley X, are deeply stigmatized. In fact utilitarian philosophers openly question if thresholds for humanity exist. If such thresholds are not met personhood is not achieved thereby rendering a person non human.  While this may be a rigorous and intellectually stimulating issue to grapple with I for one would prefer to spend my time advocsting for the rights of our most vulnerable citizens. And yes, Ashley X despite her cognitive limitations is very much a human being as is Charley Hooper.  I take this as a given and treat such individuals with the same respect I would like to be treated with. This for some is a radical idea. A thought that has led to many sleepless nights.