Timothy Bowers and Deeply Ingrained Disability Based Bias

Last month I wrote about Timothy Bowers who died within 24 hours of sustaining a devastating cervical spinal cord injury. Mainstream newspapers dubbed him the deer hunter as he fell out of a tree stand.  Like many people with a disability I found the circumstances of Bower’s death deeply upsetting. Equally disturbing was the way the end of his life was framed by bioethicists--they hailed Bower's death as being a paragon of patient rights and autonomy. I expected Bower’s death would go viral. To an extent it did. There was an explosion of articles published a few days after Bower died but the stories went no further. Indeed, Bower quickly became newspaper filler. What all reports failed to dele into was the fact Bower’s death was highly unusual. It is not every day a person experiences a spinal cord injury and at the family’s request is removed from a medically induced coma. Upon consciousness Bowers was told of his condition and a grim portrait of his future was drawn—he would be a vent dependent quadriplegic, likely live in a nursing home, he would never hold his soon to be born child, and that the quality of his life would be quite poor. The message was not subtle: death was preferable to life. 

This week two stories have been written about Bower’s death. Richard Senelick published an article, "Reconciling Life and Quadriplegia" in the Atlantic. Link: http://www.theatlantic.com/health/archive/2013/12/reconciling-life-and-quadriplegia/281821/#comments Senelick is a neurologist and medical director of Rehabilitation Institution of San Antonio The second essay I found, "The Misguided Notion That Life with a Disability isn’t Worth Living" was written by Tiffany Carlson. Link: http://blog.easystand.com/2013/12/life-disability-isnt-worth-living-misguided-notion-wont-go-away/

There is no question that a cervical spinal cord injury is devastating. There is no question that life as a vent dependent quad is very difficult and expensive. These observations do not imply a very good life as an upper level vent dependent quad is not impossible. I have known a number of men and women who have lived such a life. They got married and divorced. They had jobs and many earned an advanced degree. I would consider these people ordinary; but they are ordinary only because adequate social supports exist. I certainly never questioned the quality of their life. This is exactly what Bowers family did. It is exactly what the physicians in charge of his care did. It is exactly what bioethicists did applauding Bowers supposed autonomy. This is ethically objectionable and grossly misleading. It is a threat to my existence and every paralyzed person. 

Let me inject salient facts that have been ignored. Do not trust me. I have a PhD not an MD.  Here is what Richard Senelick stated:

In this case, we have an acutely injured man who was under sedation in order to tolerate his ventilator. Paralyzed and intubated, a patient can usually only respond with head nods or eye blinks. Even if the sedation is discontinued, it would be difficult to have a detailed and meaningful conversation about what it means to be paralyzed and on a ventilator. If you are trying to make a decision on whether to live or die, you should have access to detailed and accurate information about your condition. It is not easy to make a “rational” decision in a highly emotional situation, but you must try.

What people fail to realize is how biased people are against disability—especially any disability that requires a vent. When I use the term people I am referring to the public at large and every health care worker. Put yourself in Bower's situation. You go out hunting and wake up with a vent in an ICU. I do not think it was humanly possible for Bowers to make a rational choice. I have been in many an ISU as a patient. It is a technological wonderland where day and night merge. Sensory deprivation is extreme. All patients are heavily medicated many of whom are at the end of their life. This was not the place or time for Bowers to make a decision to live or die. 

Carlson gets to what is not said in an ICU or other hospital settings. She wrote: 

No one should ever assume someone with a severe spinal cord injury would rather be dead than alive, but most people who are able-bodied assume this, even medical personnel. All should be leaving their bias at the door instead.

Carlson is hopelessly naive. Bias exists in every hospital in the nation. Mistakes happen and even highly educated people can be bigots. In my opinion hospitals are among the most hostile institutions when it comes to disability based bias. We people with a disability represent the limits of medical technology and the ability to cure a host of disabling conditions. We are thus symbolic failures. Worse yet, we require more labor. We also require advanced technology that is expensive. This is a recipe for death and disaster. And this is what happened to Bowers.  He needlessly died and was given the illusion of choice under impossible conditions. I know all about this as a hospitalist once suggested to me  death was preferable to a long and arduous recovery.  Carlson maintains: 

most people would rather die than live with a spinal cord injury, even doctors and nurses think these things in secret. They shouldn’t be blamed for thinking these things, but they shouldn’t let their opinion on the matter influence what they tell family and friends of the newly injured. You have no idea “what’s worth living” until you’re in the reality yourself.

Again, Carlson is naive. But she does have a point. Bias is unacceptable. Bowers death is a sad example that bias can be lethal. Senelick drives home this point at the end of his article. 

We are on a slippery slope when we quickly make the assumption that people with severe disabilities would not want to live and could not experience quality in their lives. It is very dangerous when society views the severely disabled as not worthy of the same treatment of the able bodied. Every day we pull out all the stops to treat an elderly person with a heart attack, but then assume that someone who is paralyzed, in a wheelchair and on a ventilator could not possibly live a “quality” life. That was the assumption made by the people in Indiana.

I am regularly accused of being bitter and angry. Bitter I am not. Angry yes. I not angry about my disability. If anything I am quite proud of my body. I am angry about social injustice. I am angry about disability based bias that hampers my ability to lead a good life.  I am angry that almost every time I travel or leave my home it requires advanced planning and all sorts of mental gymnastics on my part must be performed. Spontaneous actions are impossible in the land of disability. Our physical and social environment is designed for bipedal people. Problems abound as do mistakes. Oh how weary I am of this line of reasoning. To label barriers of inclusion as  problems and mistakes  is wrong and undermines all efforts of disability rights activists and scholars. The social and physical barriers I encounter are a civil rights violation. My existence is a problem and mistakes are made because my presence in not wanted.  I really do not want to hear it. I do not want to engage with others unless it is done on an equal plane of existence. Lives are at stake. Bowers death proved this. 

Is it Possible to Have a Jackie Robinson Pee Wee Reese Moment

The history of baseball is filled with grand tales. One of the grandest is the Jackie Robinson  Pee Wee Reese embrace. In 42  that I wrote about yesterday the Jackie Robinson Pee Wee Reese moment is dramatized to great affect.  For those unfamiliar with baseball lore, Robinson had encountered shocking abuse from racists. As baseball lore has it, Philadelphia and Cincinnati were particularly racist cities. Robinson was subjected to particularly intense racist hatred. Robinson was supposedly at a low point. Pee Wee Reese was from nearby Kentucky and a southern white man. Many of his friends and even family members were angry he would play on the same team as a black man.  Hard to imagine today, but the divide between the two men at the time was perceived to be great--think Grand Canyon. The two men were not close friends but respected each other.

In 2013 there is nothing unusual about this photograph of two ball players. When Jackie Robinson broke into baseball this image was shocking. In the film 42 the build up to the so called Jackie Robinson Pee Wee Reese embrace was long, dramatic, and accompanied by soaring melodramatic music. In the film Pee Wee Reese walks from short stop and across the infield to Jackie Robinson at first base. He puts his arm on Robinson's shoulder and the two men have a short chat. This changed baseball history and the way race was perceived in the United States. The cultural logic was simple: baseball is America. If baseball can be integrated all of America can and should be integrated.

Exactly what happened in Cincinnati is unknown. What is depicted in the film 42 never took place. I am happy to let baseball historians argue about this. The details are not important. What is important is the moment in time.  Something important took place. Even Pee Wee Reese, Jackie Robinson and Rachel Robinson do not recall the details of what happened.  The important point is that it could have happened in any American city in 1947. Think about that. Let that settle in your brain and ruminate about that for a while. Think about Jim Crow laws, white only bathrooms, colored people sitting in the back of the bus. These thoughts make me shudder. I cannot imagine this world, a world my parents came of age in. In one biography of Robinson he recalled:

Pee Wee kind of sensed the sort of helpless, dead feeling in me and came over and stood beside me for a while. He didn't say a word, but he looked over at the chaps who were yelling at me and just stared. He was standing by me, I could tell you that.

When I saw 42 I was deeply touched by this moment. And this is the power of folklore and film making. Mix a real life event, an ordinary event even, with great ideas and in this case the civil rights of all black people and you create history. Based on my knowledge of baseball history, average at best, the people involved are not as important as the story that is repeatedly told. Ask any American child about Jackie Robinson and they can retell this story. At the end of his life Reese did not like the fact he had been made out to be a hero. I cannot blame him. If there was a hero involved it was Robinson. I shudder to think of the racist abuse he endured. But like Reese, Robinson was not a myth but a real life human being. Robinson's widow Rachel recalled her husband mentioned Pee Wee Reese's gesture that day and recalled "It came as such a relief to him, that a teammate and the captain of the team would go ut of his way in such a public fashion to express his friendship." 

As I lay in bed this morning waiting for the sun to rise I realized why this event has been stuck in my mind. I have never had people publicly support me or my civil rights. Of course individuals have shown me great support. As I thought about that scene in the 42 I realized I was experiencing multiple primal feelings. I was deeply jealous. Like Robinson, for a while I have felt "dead inside". An overwhelming sense of helplessness has over come me in recent weeks. I have come to the conclusion I as crippled man will never have a Jackie Robinson Pee Wee Reese moment.  I will never be equal. I will forever have to defend my civil rights and demonstrate my life is worth living.  Worse, this life long battle will be mine and  mine alone. The ADA is simply not widely understood to be civil rights legislation. Until this changes real equality will remain illusive. No wonder as the holidays approach my mood is grim.

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.