42 The Jackie Robinson Story, Disability and Loneliness

I find a host of black American writers inspiring. I am particularly drawn to Richard Wright, author of Native Son and Black Boy. However, it is Ralph Ellison's searing book  Invisible Man that is hands down my favorite. I have read Invisible Man many times.  One quote stands out and in my well worn copy it is highlighted in yellow and underlined in pen and has large stars around it: 

I am invisible, understand, simply because people refuse to see me. Like the bodiless heads you see sometimes in circus sideshows, it is as though I have been surrounded by mirrors of hard, distorting glass. When they approach me they see only my surroundings, themselves or figments of their imagination, indeed, everything and anything except me.

People never see me. People see a wheelchair. From there they make all sorts of leaps in logic, none of them positive. Tragedy. Illness. Incompetence. Lack of ability. Cognitive impairment and physical impairment. Sadness. Bitterness. Anger. Asexual. Weak. Unemployed.  I need not open my mouth for people to leap to conclusions about my life. The fact none of the assumptions made about me are remotely correct means nothing. As Ellison wrote, the version of me that others create is distorted. When it comes to imagination and disability the results are always negative. I can never stack up to the almighty and powerful bipedal individuals that look down on me and judge my life as not worthy.  There are days I cannot take this. There are days I cannot leave my home. I cannot bring myself to educate the ignorant masses that routinely accost me. There are days when I cannot battle. I have had too many of these days recently. I am not happy and dread the so called holiday season. There will be no cheer in my house. I have no interest in seeing my family. I have no interest in spreading good cheer. I doubt I will unpack the holiday decorations. I see no point in making myself more miserable. I will forego a Christmas tree this year. I will do my level best to avoid people from now until after January 1. Every year it is the same. During the month of December everyone is eager to "help" me.  I am repeatedly told it is "good to see you out and about" as though I am a charity case. 

In an effort to cheer myself up I watched 42 The Jackie Robinson movie last night. Like the vast majority of sport movies, it was not very good. There were a multitude of factual errors. Despite the power of the Robinson's life story the movie was formulaic and overly sentimental. Far superior films exist such as Ken Burns Baseball. Like most Hollywood films, 42 is overly dramatic and covers well known ground such as Pee Wee Reese public embrace of Robinson. 42 does not let the facts get in the way of a a good story. Despite its flaws I liked the film. Robison is obviously the hero of the film--"superman" according to Branch Rickey. This characterization is double edged sword. Superman has feelings and the film demonstrates what a lonely struggle Robinson had. Yes, he had the support of  his wife, Branch Rickey and others, but the taunting and gross prejudice he experienced, the vitriol directed at him was nothing short of horrific. I have no doubt he felt very much alone and worse knew he could not reply in kind. This touched me because I have been dealing with a profound sense of loneliness. The sort of loneliness that eats away at your heart and causes a pain so indescribably difficult words fail me. I can relate to what Robinson experienced. Every where I went this semester a spectacle was sure to follow. A speaking podium that was taller than me. A speakers stage with no ramp. An entrance to a hotel through the luggage room. Side entrances to prestigious buildings that are filthy and in some cases dangerous. Inaccessible bathroom galore. Bars with tables that are well above my head. Wheelchair logos and signs that lead me nowhere. What is one too do? Like Robinson, I cannot fight back in kind. I cannot express my outrage in no uncertain terms. I am forced to be polite at all times. I am not an individual I am the exemplar for all disability. If I am bitter all people with a disability are bitter. If I get angry all people with a disability are angry.  It is a classic Catch 22 situation.

So what does a depressed and lonely bad cripple do? Well, thanks to my former lover and the recent purchase of a trainer I ride my handcycle. It is too cold to ride outside. I tried that this morning. Big mistake at 22 f.  It is just not safe to ride my handcycle at this time of year. I am very low to the ground and cars are not expecting to see me or any other bike rider for that matter. So where do I ride? My handcycle is smack dab in the middle of my living room. Here is the evidence.

One last quote from Ellison that illustrates the dilemma I am facing: "Perhaps to lose a sense of where you are implies the danger of losing a sense of who you are.”  That my friends is where I am at. I do not know where I am or who I am.  It would be an exaggeration to suggest my life is at a cross roads. I will endure, I am a survivor. I demonstrated that as a morbidly sick kid. I demonstrated that when I was bed bound and dependent upon my family in 2010.  I am lost and lonely as of today. Who knows what tomorrow will bring.  Hard times indeed but I am hopeful for a great 2014. 

Lovely Video and the Disabled Body

My body is unique. My left hip dislocated 40 years ago and as a result my left leg is about two inches shorter than my right. I have a severe scoliosis and thoracic spinal fusion. The skin on my back is distinguished by faded long rail road track surgical scars. My curved spine is not getting worse but it certainly is cork screwing my body to the right as I age. There is not a single symmetrical part of my body. I am all odd curves and mismatching body parts. When I swim or simply take off my shirt people stare at me. I do not mean a passing stare but flat out rude prolonged stare. I do not feel like a freak but many strangers think this. The irony to me is I am in very good physical shape. I am slender--a whopping 143 pounds. I am strong--strong in the sense I am built for endurance and long handcycle rides. Put me in a weight room and I will become instantly bored and capable of lifting little weight compared to other men. I am a man of motion. Movement is a constant.

I am pleased with my body. It has served me well. I hope to die with a battered body, one that was used to its fullest extent. I rail against physical loss as I age. Getting from floor to wheelchair was once a simple process when my son was a boy is now exceptionally difficult. I suspect my hearing is getting bad. I tire more easily as steep hills take me a while to get up.  All in all though I have fared well. This thought process is out of the norm. Many people with disabilities struggle with their body image. I get this. Our bodies are perceived as deformed or defective and are routinely medicalized. Here is where I really depart from the norm. I find disabled bodies attractive. Culture is inscribed on our bodies. I have seen many disabled bodies. I find scoliosis fascinating. I see a man or woman shirtless with a profound scoliosis from behind and think their body is gorgeous. A profound scoliosis is  akin to a tree that has grown in an unusual fashion due to environmental variables. I find amputees and the residual limb equally interesting. All disabled bodies have an element of beauty to me. This point was reinforced today when I saw the below video.



I love this video.  According to the Huffington Post the video was created by Pro Infirmis. What resonated with me was how much the people with a disability enjoyed the process of having their body duplicated in mannequin form. Even better was the fact the mannequins were put in store windows in Zurich to celebrate International Day of Persons with Disabilities. I do not care one iota about the reactions to the mannequins by the general public that walked by. I experience those sort of reactions daily. I care about the people with a disability that got to celebrate and enjoy their body. This is all too rare. Remarkably, I even like the title of the video: "Because Who is Perfect? Get Closer". No human is perfect. No body is without flaws. Like the other people in this video my body is simply different. In that difference I see great beauty. I wish others thought the same way.

Ritual Humiliation in the Hospital

Hospitals are total institutions. They operate much like a prison, nursing home, military base, or university. Every aspect of life is controlled. Erving Goffman did sociological field work in mental institutions. He was not impressed. No institutions are impressive. Institutions violate our deeply ingrained and highly valued sense of autonomy. When one's life is controlled by a total institution options may or may not exist. At issue is the measure of control. Do not buy into the jargon spewed by those that work at institutions--the core issue is always control. At a military base or prison the control is extreme and obvious. All wake up at the same time. All eat at the same time. All go to the bed at the same time. A hospital is not much different. Once admitted to a hospital, a patient has no control over their life and liberty. Choices exists but they are limited. One is given an ID bracelet--an identity marker at multiple levels symbolically and practically. Time slows down. Control of your time, when and where you will be seen is not possible. You are at the mercy of the vagaries of the system. Violate that system and you are branded a "difficult" or "noncompliant" patient. If you earn this designation you are going to get inferior care. Compliance is expected. You have a role in the institution. Your job is to get better and do as you are told. Do not violate this dictate. To do so not only earns you inferior care but puts your life at risk. Do not fool with the powers that be. You can easily be shipped out to a far less pleasant place. You can find yourself heavy medicated and in a drug induced stupor. Institutions calls this chemical sedation or chemical restraint. Yes, we no longer tie people to the bed or their wheelchair nor do we perform lobotomies on the mentally ill. We drug people into silent oblivion. Control and the never to be changed highly valued schedules rule.

These thoughts have been coursing through my mind because of a photograph a reader sent me. I was stunned. In a hospital symbols abound.  Obvious social markers at a teaching include the archetypical long white coat. Some symbolic markers are objectionable. For instance, I was at a hospital facility in Syracuse and noted physician ID tags had the large word "DOCTOR" in bold black ink added to their ID tag. One might as well put the word GOD on the ID. Negative symbolic markers  exist. Here is a perfect example

This tag was placed on a Bad Cripple reader at an emergency room. The man had a spinal cord injury. This tag has a single use--to further spoil the identity of the man in question.  Erving Goffman wrote about spoiled identity in his classic 1963 text Stigma. Goffman noted that there were three types of stigma: physical identity, group identity, character identity.  We people with a disability are saddled with all three forms of a spoiled identity.  What the "fall risk" bracelet does is separate this man from the possibility of normalcy. Goffman would have labeled the bracelet a dis-identifier. In the institutional setting of a hospital this man is physically and socially problematic. He is a physical risk to himself and as such requires more work--often hard physical labor. He might need to picked up if he fell. He might be injured if he fell. The worst part of this sort of dehumanization is that the man cannot complain. Normal people, the health care staff, are the power brokers. The patient is powerless. He or she must defer to the power and hopefully kindness of expert others. Other here refers to any "normal" person, staff or visitor. Staff expects this man to be compliant and not complain.  Can you imagine what would happen if this man objected and tried to explain the symbolism involved?

When a person with a disability enters a hospital he or she encounters a hostile environment, one that is likely grossly inaccessible. Ironic, eh. The infuriating thing is any effort to change the social structure of the institution is domed to fail. The second you cross the threshold and enter an institution you have relinquished control to others. When in a pissy mood I upset the expected balance in institutions. I have been given detailed informed consent forms seconds before a procedure and with a straight face I tell the uninformed health care worker that I will need at least 30 minutes to review the form. When I have been admitted to a hospital and when weary of the endless irrelevant questions that drone on I will insert inappropriate replies. For instance, when one gets to "hearing normal" I repeatedly say what. It usually takes at least six "whats" before the health care employee catches on. I am guilty of being subversive. Frankly, I thrive in an institutional setting. I am a master manipulator. I think most people that have gone through the medical mill learn how to be subversive. It is the only way to assert your humanity and lessen the control an institution has over your life. The fact is the more you are liked the better your care will be. I saw this as a sick child. I saw this as a sick adult.  This is a social skill that every person with a disability must hone as if their life depends upon it for I learned in 2010 one's life does indeed depend upon being perceived by health care workers as possessing a life worth living.

Stupid Ideas that Ignore Real Problems

Travel when one uses a wheelchair is needless difficult. Airlines are rude to all people but the industry has a deeply ingrained bias against all people with a disability--especially those such as myself that are paralyzed and use a wheelchair.  More generally, accessing any form of mass transit is inherently difficult for most people with a disability. As one who has traveled a lot in the last four months it is easy to conclude the vast majority of people who are not disabled or know nothing about disability either do not care or are at best disinterested. Not my problem I suspect is the prevailing sentiment. In this void a market exists for designers. How can a wheelchair be changed to fit the existing world constructed for bipedal people? Well, the most recent silly and useless invention that has been floating around the internet for a while is the folding wheelchair wheel.

 
This folding wheel is being hailed by many. Apparently people with a disability were very vocal and interested in a folding wheel. I do not know any of these vocal people. Indeed, I have sent a photograph of the folding wheelchair wheel to my paralyzed brethren. All thought the idea it was useless and failed to address the real problems we encounter when trying to access a plane, train or bus. Regardless, proponents of the folding wheelchair wheel state:

Getting from A to B in a wheelchair is enough of a challenge in itself, without considering the hassle of stowing the chair away each time its user wishes to travel by car, plane, or train. The Morph Wheel aims to make life a little easier in this regard, by providing a wheelchair wheel which folds into almost half its original size.

Not considered: Why is traveling for people that use a wheelchair a challenge? It is a challenge because the presence of people with a disability is an odorous burden to the airline industry. A folding wheelchair wheel takes up less space. It supposedly fits in the onboard luggage bins of an airplane or under a seat. This is great but I sincerely doubt time pressed and dare i say hostile airline employees will let a person with a disability put the wheels under a seat or in a luggage bin. Honestly, can you imagine showing up with this large black bag at an airplane gate and expect a positive reaction? 

How exactly am I going to get the not so small wheels depicted in the over head luggage bin? A friendly airline and helpful employee? I doubt it. The assumption here is that no person such as myself could fly from point A to point B alone. What about the wheelchair frame. Where is that going? Not under the seat. In the luggage bin? Not a chance. Oh, and forget a carry on bag. One to a customer.  This invention creates as many problems as it supposedly solved.

What draws my ire is the praise the folding wheelchair wheel is getting. Technology types and designers are lauding it as being a remarkable and important invention. This is not a surprise to me. History is littered with bad ideas and even worse designs that are supposedly wonderful for people with a disability. Rampant anti disability bias is the real issue. The problem is social. My presence is unexpected and unwanted. I take up too much space in a word designed for bipedal people. The answer is not to change whatever adaptive device I use but rather construct a social and physical environment in which all people with a disability are valued. Twenty-three years post ADA physical access remains an afterthought. The lack of logical and flawless inclusion has social consequences. I do not navigate throughout an airline terminal easily. I do not enter a building up a set of steps. I get into buildings through side doors or worse. Much symbolism is involved here. It is easy to conclude my presence is unwanted. And that my friends is  a social failure all the folding wheelchair wheels in the world cannot solve. 

The SDS Has a Problem: Will they Respond?

I am not a fan of the SDS (Society for Disability Studies). I should enjoy going to SDS meetings but I do not. I have been to two SDS meetings and did not enjoy either meeting. The meetings completely and utterly fielded to resonate with me. I know people who are actively involved in the SDS and I respect the fact they get much out of their involvement. I am not one of these people. In fat I am very critical of the SDS and two years ago I took the SDS to task on this blog. See: http://badcripple.blogspot.com/2010/05/academic-conferences-who-can-afford-to.html

Two critical essays about the SDS have been published in the Feminist Wire in the last few days. The most recent article by Corbett Joan O'Toole is devastating.  See: http://thefeministwire.com/2013/11/op-ed-cha-ching-economic-barriers-in-disability-studies/ O'Toole's essay is devastating because it is so basic. All you need to know is the basic math:

Conference registration: $230

Hotel room (3 nights at $159 * 17% for tax and lodging fees): $558

Airfare (roundtrip): $325

Transportation from airport to hotel (round trip): $54

Food (hotel restaurant per day * 3 days minus conference meals): $90

Required costs for this conference: $ 1,257

These are conservative numbers, particularly the food costs.  But often that is the only place where I can cut costs. So when I attend a conference, I eat as little as possible outside of meals covered by registration, and I bring food containers from home to save part of each meal to eat later. On the first day I find a local store and purchase drinks and nonperishable food to stretch my money.  Hotels are rarely near grocery stores so I am usually paying for overpriced, highly processed foods.

I do this not because I want to. I do this because I am poor. I am a Disability Studies scholar. And like many other disabled scholars, I am poor. I receive $1,100 a month in government benefits and a pension from when I worked.  Soon my pension ends and I will live on $810 per month.

There is no need to read the rest of O'Toole's essay. The economic reality cannot be ignored. Adaptive sport programs encounter the same problem as the SDS: it is extremely expensive to participate. I would speculate the SDS and a typical adaptive sort center is beyond the budget of 90% of all people with a disability. Both the SDS and adaptive sport programs have the same response to economic reality: scholarships are available. Sorry but no. A scholarship is of no help to most people with a disability whose primary concern is putting food on the table and paying rent. To participate costs money. To participate involves transportation.  When one lives on $810 a month as O'Toole does the SDS or a adaptive sport program is a pipe dream. O'Toole calls this a "dirty little secret". I call it exploitation. The SDS exploits the very people it studies and supposedly advocates for. But there is very little advocating going on at the SDS. Indeed, the only advocating I have seen in my limited exposure is individual career advocacy. This is a nasty mean spirited comment. It is also true.  We are talking about the tacit acceptance of economic gate keeping. O'Toole calls this economic ableism. Ouch! We are talking about class. Only the privileged and elite can afford to attend the SDS. Those with tenure, those who hope to get tenure, and those that want to enter the field participate. The people who do not attend accurately represent the disability norm. Poor, unemployed, socially isolated, economically deprived. In a word, disenfranchised. O'Toole who really nails it when she concluded: 

When economic barriers create a Disability Studies without a majority of publicly identified disabled people, it is an oppressive enigma wrapped in a conundrum hidden beneath a patina of deceit.

It is not often I can say this: I wish I wrote those words. I am sure the SDS leadership is not happy. I am sure they will correctly state we are a professional organization, all such organizations must charge fees and we do more than most to provide scholarships and be inclusive. Hell, I bet an SDS committee is being formed. Meetings will be held. A response will be drafted. Blah, blah, blah, blah... The real problem with the SDS is it has no soul. Forget the famed SDS dance. Forget activism. The SDS is an intellectually isolated silo. The SDS is a social and academic network that is devoid of interest or relevance to the vast majority of people with disability. This is a disgrace. Paul Longmore would be horrified. Ed Roberts would be appalled. Longmore's work went well beyond disabilities studies scholarship. His work was rooted in activism and he railed against the social and economic forces that oppress people with a disability. He was the soul of the disability rights movement. Hey, this is not an original observation. Look at the cover of Longmore's classic Why I Burned My Book. This is John Hockeberry's line. 

John Kelly, a real activist and scholar who I deeply respect, asked me today what can be done. I pessimistically replied nothing. I observed online formats will not work because people are inherently social. We need to see and meet each other--break bread and share a meal.  There must be a solution. Here is what I propose. I suggest we create a nation disability rights day. We can call on each and every independent living center, disabilities studies program, national organizations such as ADAPT, NDY, DREDF, and many more. All people with a disability meet and advocate. Practice various forms of civil disobedience. Be confrontational. Be direct. Support those with no support. Go to a nursing home. Go to a group home. Support those with no support. Do not do this for your career. Do this because it is is the right thing to do. Do this because your life depends upon it.  Even a grim man can dream. 

Wise Words When One Enters the World of Disability

Fear is a primal emotion. Many people fear disability. We crippled people as all know are the only minority group one can join against our will. All humans are one physical accident away from being crippled. Examples, tragic examples, abound. The paralyzed bride. The paralyzed architect who dedicates his life to walking again via the exoskeleton after a crane falls on him. The elderly who have a stroke. People with diabetes that lose a limb. People who experience an industrial accident and are blinded. The human body is frail. Everyone knows this. Adults and children know they can be hurt. The land of disability is one mishap away from reality. There is good reason to be fearful of disability. I see this enacted in a myriad of ways. Stares. Always the stares. Outright bigotry, not common place, but it exists. "I would rather be dead than paralyzed". I have heard this many times. Subtle thoughtless reactions to my presence. Mothers in the supermarket grab their kids hand and whisper "Watch out for that man". Thanks, a lesson has been learned. Fear all who use a wheelchair.

None of the above is new ground. Social scientists have observed and analyzed why people fear the crippled for decades. I have experienced prolonged social isolation that is the companion of fear. No one wants to be around socially polluted people and polluted I am. My presence creates a symbolic stink. A spectacle can and often does follow me as I navigate a hostile world. I enter a posh New Haven, CT hotel through a locked lift next to the steps. I enter the hotel via the baggage room. People stop and stare. I go to a minor league hockey game with my son. We observe a group of people with obvious cognitive disabilities. By the time the game is five minutes old every person seating next to these men and women have moved to different seats.  This group, tightly knit, is surrounded by a sea of empty seats. On the drive home my son falls asleep and I cry. Did those that moved know they were cruel bigots?

The fear of disability is not as prevalent in my life as it once was. I am aging into normalcy. A white middle aged man using a wheelchair is not as much a social affront as an 18 yearly male or female using a wheelchair. People assume I had a "regular" life and experienced a tragic accident as a mature adult. This misconception makes the ignorant feel better. Hence they gasp when and if they learn the truth. I have been paralyzed more than 35 years. Oh my God! Tragedy! Horror! And silently fear. Such people slink away from me unable to cope with my reality. What people do not get is just how oppressive being crippled is. Eva Kittay calls the social work and required social navigation skills needed to lead an ordinary life emotional labor. People like me who use a wheelchair are always trying to sooth the disruption our presence causes. Sure I will go in the back door. Of course I do not mind using a wheelchair lift filled with trash. No accessible bathroom? No problem. I will dehydrate myself. When I fly I will be the first person on and last off adding a great deal of time to my trip. I am expected not to mind. I am expected to put on a happy face.  Those charged to assist me on and off the plane do not speak english nor do they know what to do. No problem. My job is to educate them. Education. It is always about education.  I have been educating people for a long time. The lessons are not working. I am weary. Over the last few months I have come to the conclusion I will never be equal to others. Bipedal typical others. My presence will always be a disruption. My existence a spectacle. My job from now until I die will involve heavy lifting. The emotional labor is overwhelming.  It is in fact deeply depressing. I yearn to be normal. To go out the door like any other person and not feel as though the weight of the world is on my shoulders. I am not a person. I am the representation of all crippled people who use a wheelchair. If I am tired and cranky, have a negative experience with a typical person, the lesson learned is all people like me are mad at the world. Sorry but no. I am not mad at anyone. I am tired. I would like to be treated with a modicum of respect. I would hope people, 23 years after the ADA was passed into law, considered equal access a civil right. This is not the case. I have no reason to believe the required leap in logic to a civil rights thought process will ever take place.

The mere presence of people with disabilities is a social problem that defies a solution. It is not a shock to me but it is to others when they enter into the world of disability. Victoria Brownworth, an award winning write and journalist recently wrote about her entry into the world of disability in the Advocate. Link: http://www.advocate.com/commentary/coming-out/2013/10/11/coming-out-asdisabled

Ableism, like homophobia, is a thing. It pervades our entire society. The Americans With Disabilities Act is an unreliable farce, and those of us who are disabled — one in five — must battle with employers and landlords, doctors and health insurance companies to get what we need. We have to be activists whether we want to be or not, and yet all the while we must do our best to hide who we really are from those on whom we depend for survival. But if one in five of us is disabled, that means everyone knows someone with a disability. Every family has one of us, every workplace, every school, every friend. We are everywhere. But is disability addressed in any community — LGBT or any other — or are we shunted aside as much in 2013 as we were centuries ago, kept out of institutions by recent laws, but not by attitudes?

One in five LGBT people has a disability. Do we even think about it as a community, other than to pay lip service to the term "ableism"? I have a friend on Twitter — a trans woman with cerebral palsy — who I would never know was disabled from her exchanges. But I know, because I’ve experienced this myself, that when she goes out in her wheelchair, she’s treated as if she’s not really there. Her smart, witty, articulate self is obliterated by people seeing only the disability. People speak to the person pushing your chair, as if you’ve been rendered mute. I haven’t been rendered mute. Ableism is the last and perhaps most formidable ism we have to address in our society. Our fear, as a culture, of the sick and disabled is not much evolved since the Middle Ages. We no longer warehouse the disabled, but we still want to. We still want to keep the different bodies out of our line of vision, because disability feels foreign to us, and frightening — perhaps because we know it could be us next. So this is me coming out crip. I never thought I’d be disabled until I was. The issues surrounding disability are huge and touch all of us, so none of us can afford to ignore them.

All of us will be touched by disability. None are unaffected. I wonder when this human rights issue will hit the front page. I wonder when will disability based activism be valued. I wonder when will disability studies scholars start advocating for those they study and dare I saw exploit.  Of one thing I am sure. I will never see or experience the equality that has eluded me since I last stood up as an 18 year old man. Grim thoughts on a lovely though cold day. 

Inside Higher Education Picks Up on My Story

Today, Inside Higher Education published an article by Megan Rogers that expanded on the significance of my most recent post about being excluded from a disability related conference held at Hobart and William Smith College. Here is the link: http://www.insidehighered.com/news/2013/11/19/disability-studies-meeting-wasnt-accessible-those-disabilities#.Uotllux0sd8.facebook
I also want to link to Stephen Kuusisto's post at Planet of the Blind. Link: http://kuusisto.typepad.com/planet_of_the_blind/ Kuusisto was equally involved and I want to acknowledge my deep gratitude for the solidarity he and Rebecca Garden displayed. Kuusisto and Garden could have easily decided to participated at the conference. Steps are not an architectural barrier for them. In a rare display of academic and personal integrity, they refused to participate. Kuusisto and I left Hobart and William Smith with deeply mixed emotions.  I had looked forward to this event.  This was an opportunity for me to see a small elite liberal arts college that I was told was gorgeous. It was indeed a gorgeous campus. It also presented multiple challenges for a person that uses a wheelchair. I was shocked, dismayed, and humiliated. For Kuusisto the visit was a trip down memory lane. His father was for many years president of Hobart and William Smith College. I got to see the house Kuusisto spent many years living in as a youth. I cannot say we enjoyed our trip to Geneva, NY but it was eventful that's for sure.

I would like to echo one point raised by Kuusisto in his post. Hobart and William Smith has reacted immediately and appropriately to the civil rights violation I experienced. Unlike many institutions that would form a committee and attempt to sweep what took place under the rug Hobart and William Smith has reacted proactively. President Mark Gearan swiftly apologized and organized meetings that were held yesterday. He has vowed to keep me and Kuusisto informs as to what changes will be made. After an initially awkward exchange with me,  the organizers apologized and they too vowed to incorporate significant changes. I emphasized to Megan Rogers the real significance of the story will be revealed in the spring when the working group meets again. Today, I made multiple and detailed recommendation to the organizers of the event. It is my hope many of the changes I suggested will be acted upon. If this is the case Hobart and William Smith will establish a precedent for how to react to egregious ADA violations other institutions and academic organizations can follow. Sadly this implies more such violations will take place. And I know they will. Indeed, "problems" are what I encounter virtually every time I attend an academic conference. The disconnect here is obvious to me. Access and inclusion is not a problem but rather a matter of civil rights. I, as a person with a disability, have the right to participate and expect no physical or social barriers will be encountered. This is not how my inclusion or participation is perceived by my academic peers. I have continuously asserted I am not problem but rather a human being that shares the same civil rights as others--typical others.

One last point: In the last six months I have made a concerted effort to interact with scholars in the health sciences. My experience in 2010 healing a significant wound shook me to the core. It was painfully clear my existence was not valued by medical professionals charged with my care. I could not help but conclude medical care now worships at the alter of high tech care but in my estimation has lost its soul in the process. Humanism is all too often absent. I want to change how people with a disability are or are not treated in our health care system. Lives are at stake, of this I have no doubt.  Surely the recent case of Tim Bowers death within 24 hours of a severe spinal cord injury is a perfect example of a deeply ingrained bias against life with a disability held by many physicians. Bowers needlessly died because his life was thought to have no value. Worse yet, he was given the illusion of choice. And what was the response of bioethicists? They hailed this man's supposed autonomy. I find this assessment perverse. Hence my effort to interact with clinicians and those currently in medical school or doing their residency. These people represent hope to me. If I can reach physicians in training who are open minded, eager to learn, it will be to the benefit of all. I have no idea if I will be successful but I am feel compelled to try.