A Unique if Not Gross Dog Story

If you do not like dogs, labrador retrievers in particular, stop reading. I am not joking. Last night I got a delivery of groceries (this my guilty pleasure). I emptied all the bags on my counter and started thinking of meals to prepare. I love to cook and have become adept at making small meal portions that I freeze. I am happy as I cook and listen to the radio with interest as to how the Mets will do. Matt Harvey was going to be pitching later and he is a budding star. I was making multiple meals. I made four fancy hamburgers. I doctored up pasta sauce with lots of onions and home made meatballs. I cooked up some beets and put fresh chives on them. I made a chicken and bean sprout dish. I am set for at least a week in terms of meals. Life is very good.

My black lab Kate loves it when I cook. I am a sloppy cook and nothing that falls on the floor is left to chance. Kate watches me like a hawk. The minute I move away from the stove top she rushes over to eat and lick the floor clean. Last night was no exception. Kate is thrilled when carrots, a bit of meat, an onion, celery or any food item hits the floor.  She is like a vacuum. I am cutting and chopping away when I notice Kate is even more interested in me than usual. She is laying down on all fours and starts to inch closer to me. Surely I am not going to notice. But this is out of the norm. I chalk her creeping towards me to the smells of garlic, onion and cooking meat. I ignore her until I realize she is directly under my wheelchair and licking the floor with gusto. Her unadulterated joy is palatable. However, inching under my wheelchair in the kitchen is not allowed. She only goes under my wheelchair when she is afraid or feels danger is nearby. Something is clearly going on. I did not drop a big piece of meat on the floor or make any other sort of spill that would cause such happiness on her part. I order her to move and I discover the source of her pleasure.  I scratched my toe agains the brick wall in my kitchen and am bleeding. I am bleeding a lot. Kate likes my blood.  Scratch that. Kate loves to lick my blood. It gives her unparalleled joy that is rivaled only by her second favorite thing to lick--cream, specifically aquaphor. What is a single cripple guy supposed to do? I need put a band aide on my toe and douse it with hydrogen peroxide. My skin and wound care kit is in my bathroom. I am still bleeding and will leave a blood trail I do not want to clean up. Then it dawns on me I need not worry. Kate will follow me all the way to the bathroom and clean the floor with joy and vigor.

My toe is fine and Kate appears no worse for the wear. I was a bit worried about her though. Licking up blood cannot be good for her but I put my mind at ease--she was her usual energetic self in the morning. Her tail was wagging away and she had love in her eyes. Her entire body was pulsing with energy and was dying for me to get up and play. What a great relationship I have with her. The bond we share is humbling. I am as devoted to her as she is to me. But I have a confession. Kate is a unique dog. Like me, she does not understand bipedal people. In fact she is terrified of steps, a fear that I find fascinating but understandable. Steps are not relevant to her life or mine. She also has no clue how to physically move around people that are bipedal. If a person is walking toward her she does not move. Not an inch. She expects a bipedal person to alter their direction. In contrast, Kate understands wheelchair movement. She knows exactly what to do once I move or any other person using a wheelchair moves. Although Kate is highly social, she prefers to interact with people that use a wheelchair. Line up a dozen people, one of whom uses a wheelchair, and she will go to that individual every time. She will put her chin on this person's thigh. This has led me to wonder about the bond I share with her. Am I closer to her than your typical, meaning bipedal, dog owner? Does she know I am different? If so, is she protective of me? Does she sense the social stigma associated with wheelchair use? Sadly, I will never know the answer to these questions. I will end with this thought as it is time to go outside with Kate and have some fun.

Critics of this Bad Cripple Take Note

Being a self-professed bad cripple does not endear me to everyone that runs across my blog. In fact I routinely get angry email and comments that borders on hate. I read these emails because they bother me. It has never been my intent to hurt others and I am often taken aback at how my words are misunderstood or why they prompt deep seeded anger. Regardless, my words have enraged some people and a friend once told me I piss people off in a nontraditional manner (a comment I am not sure how to take). Sometimes it is a specific post that incites angry replies; my analysis of the video Purple Feather posted in April 2011 still generates fury. Recently one reader commented:

Are you aware of what people with a disability have to live on. It's not much… Until you know anything about anyone who has to ask for help, I suggest you volunteer with the physically challenged. Learn about their life. See how they struggle to make ends meet… You have to be out of your fucking mind. I wish for you that you are incapacitated for the rest of your life (hit by a car, burned in a fire, shot in the spine… and then I'd love to see you begging on the street. I'd give you money and a very long speech on KARMA. Good luck to you. I hope you get that heart transplant that you desperately need. You're not a fucking idiot. You are cruel… When you actually learn what it's like to live with a disability then you should comment on these types of videos. Until that time. you should keep your thoughts to yourself.

Most angry email I get is associated with hot button issues. For instance, everything I have written about growth attenuation or the so called Ashley Treatment prompts a visceral response. I have gotten hundreds emails from people who rail against my opposition to growth attenuation. Suffice it to say, the email I get in this regard makes the comment above appear polite. Critical email often accuses me of not knowing anything about the subject I am discussing. In terms of growth attenuation this is partly correct. I have not raised a child with a cognitive and physical deficit and yet feel comfortable being a staunch opponent of growth attenuation. I try hard to reply to severely critical email in a neutral way. I defend my views and refuse to be baited into replying in anger.

One group of people who have consistently taken me to task are those with a spinal cord injury that have devoted much if not all their time to a cure for paralysis. I do not understand the fury that has been directed at me by those involved in what I call the cure industry or the Christopher Reeve School of Paralysis. When Reeve was injured in 1995 I grossly underestimated the impact he would have on the cultural perception of spinal cord injury. I have been severely critical of Reeve and once published a diatribe entitled “Wishing for Kryptonite” in the Ragged Edge. I will readily admit I have not been diplomatic in my criticism of Reeve and the cure industry. While I am no longer disturbed, the fact remains Reeve fundamentally altered the way spinal cord injury was perceived. Last year I wrote: Reeve cemented an antiquated perception of disability. Disability is a fate worse than death. It is a singular experience, a tragic experience. The "job" for all people with a spinal cord injury is to seek a cure to paralysis. No risk is too great. No procedure too risky. No amount of money is too much. No matter what the focus is always on walking. High tech medicine is embraced even if it is shockingly expensive and impractical. Think the exoskeleton. Reeve also helped establish the idea that if we cannot be cured today then our paralyzed bodies must be maintained in good working order. This is a full time job unto itself. It can require a staff of people as Reeve had. But it requires total dedication. A family, job, and social life is of secondary importance.

A singular focus on cure post spinal cord injury is hard for me to comprehend. Simply put, I have never perceived using a wheelchair as inherently inferior to bipedal locomotion. I do not compare my paralyzed body to a typical body. I do not bifurcate my life into pre and post injury. My utter lack of interest in a cure for paralysis was once commonplace. In the Christopher Reeve era, a belief in cure is increasingly common and is indicative of a significant cultural shift. When I was paralyzed my peers and I spoke of our future and railed against the stigma associated with our spoiled identity. Today, newly paralyzed people have no connection with old timers such as myself. Few know anything about the disability rights movement and I get a sense some expect to leave rehabilitation with a new adapted van and ADA accessible home. The lack of concern—what will I do now—worries me. Far too many people with a recent spinal cord injury make a Faustian bargain: they will focus on cure and if it does not come at some point in the future they will reevaluate their life. Too often this re-evaluation will be harsh and deadly.  Christina Symanski is a perfect example; her overwhelming negative assessment of life post spinal cord injury and decision to end her life by not eating and drinking is no longer unusual. I don’t get it. She wrote:

Unless you've been in my shoes, I have a hard time absorbing any justifications, or reasoning as to why I MUST, or SHOULD continue to suffer. I'm not just referring to "quadriplegics" in general. I'm talking about women, with high level complete spinal cord injuries, that are in their thirties, that were injured in their twenties, that have no children, that lost a career, that have IBS, and that suffer from daily bouts of autonomic dysreflexia. If you are one of the few people on the planet that fit in that category, by all means, share your insight, and advice on coping with me.  If you don't belong in my boat, please save your judgment, and just take a moment to think what you might do in my situation, and how you might want to be treated... Imagine needing to ask someone for every need; from scratching an itch, to brushing your teeth, to tying your shoes. I can guarantee you, from experience, that your worst fantasies, would not do justice, to the reality of actually living this way. I have lived on both sides of the fence, both as an able bodied adult, and as a disabled adult. I know exactly what I'm missing out on, and how much better life could be.

I too know life pre and post spinal cord injury. My life pre and post spinal cord injury have been wonderful. I have led a privileged life. Like any other person I have had my fair share of trials and tribulations. I was married and divorced, an experience I do not recommend. I had a severe skin wound in 2010 and spent almost a year in bed recovering (and many more months recovering from being in bed so long). On the positive side of the ledger I earned a PhD from Columbia University, have published widely, taught at the university level, and have had the great joy of being a father.  All in all life has been and continues to be sweet.

A cure to spinal cord injury was not relevant in 1978 when I was paralyzed nor is it important to me in 2013. For some, my lack of interest in a cure prompts anger. One of my most strident critics wrote that “I know your school, and have seen dozens of minds and spirits broken by it”. I am not really sure how I break spirits and minds by embracing an identity tied to disability and disability rights; however, this charge has been levied by others. Some comments have been very harsh. In one of my earliest posts circa October 2007, “Why Focus on Cure”, I questioned the larger significance of Christan Zaccagnino’s decision to go to China for a surgical procedure designed to cure or improve her functioning. Ms. Zaccagnino commented “I am mrs zaccagnino and you have no idea what you are talking about asshole.” Another person wrote: I pity you Bad Cripple. You preach equality for disabeled persons in wheelchairs and criticize Ms. Zaccagnino for her decision to think beyond her condition and strive for her dream of walking again. I walk on two legs and I dont consider myself Ms. Zaccagnino equal, because she is exceptional. I can only pray to have half her strength, perseverance and passion. Her will and positivity seem to be beyond what your acrimonious logic can comprehend. "Why focus on a cure?" because some are unwilling to accept anything less then their dreams. Shame on you to disparage those who dreams. Shame on you.

I remain perplexed by these comments. I have repeatedly stated a cure for spinal cord injury is a laudable goal. If a person wants to focus their life around a cure to spinal cord injury so be it. I have not nor will I ever comment on the current status of advances in the cure for spinal cord injury. People devoted to cure know far more than I ever will. But I do have the right to question and analyze the larger social significance of this effort and the impact it has on the lives of all people with a disability. I am afterall a disability studies scholar and activist. I have recently begun to wonder though if some of those dedicated to a cure for spinal cord injury are creating a cult like existence for themselves. Even the slightest criticism of the cure industry prompts a strong reaction. For instance I have recently taken some heat from those involved with Rutgers University Care Cure Forum. This website offers a dizzy array of over 70 different forums. I find little of value in the Care Cure forum despite the fact I look at it every few months (I am specifically looking at comments on sports equipment). I am decidedly uncomfortable with the praise heaped upon Wise Young of the W.M. Keck Center. “The mission of the W. M. Keck Center for Collaborative Neuroscience is the development of effective treatments for acute and chronic spinal cord injuries and to move these discoveries from laboratory to human lives as rapidly as possible.” I do not take exception to this goal but I do worry about the impact it has on the lives of people with a recent spinal cord injury. The same can be said when I look at other powerful institutions such as the Reeve Foundation and the Miami Project that push for a cure to spinal cord injury. There is a zealous following to the cure industry I am simply divorced from. I am not willing to spend my limited time searching out clinical trials when I encounter needless bias every time I leave my home. I have always maintained the problems associated with spinal cord injury are largely social. Of course some people struggle with paralysis. For instance, Symanski went into great detail about her physical struggles with her bowels and autonomic dysrelexia. I always end up returning to what Robert Murphy wrote long ago—disability is a social malady. And this is where I think our resources and efforts need to be directed. Social supports that make life possible post spinal cord injury. So to my critics I say more power to you. I wish you well and consider us to be on parallel tracks.  Go ahead and focus on cure. It is an altruistic goal. I on the other hand prefer to focus on equal rights.   

Hard to Believe: Sports Illustrated, Teddy Kremer and Feel Good Stories

Last week I saw your typical feel good story on the news. Teddy Kremer, a 30 year old man with Down Syndrome served as honorary bat boy for the Cincinnatti Reds. The game was a blow out. the Reds won 11-1. What was of interest, the "heart warming" story, was Teddy Kremer's request. He asked Todd Frazier to hit a home run. In archetypical baseball lore dating back to Babe Ruth Frazier came through. He hit a bomb to deep center field. No big deal given the game was well out of hand. What took place when he crossed home plate became the story. Teddy Kremer was thrilled. I recall watching the highlights and am not afraid to admit I got teary eyed. Talk about joy and love for the game! Teddy Kremer expressed such raw emotion it brought back vivid memories from my own childhood when I lived and died with each and every NY Mets win or loss in 1969. Baseball with all its ups and downs, heart breaks and joy filled my life at a time when I was morbidly sick and hospitalized. Oh the look on the face of Kremer and Frazier. Even the prerequisite umpire's stony faced veneer cracked--he had a wide grin on his face as he watched Kramer. The crowd cheered louder for Teddy Kremer's reaction than it did for Frazier's home run. And this is exactly where I expected the story to end. A classic feel good moment in baseball. Numerous local television stations showed the video clip. See it for yourself:

I forgot about Teddy Kremer until yesterday when I read a great article by Paul Daugherty in Sports Illustrated entitled "Reds Batboy with Down Syndrome a Great Story, But it Shouldn't End". Link: http://sportsillustrated.cnn.com/mlb/news/20130423/teddy-kremer/ Daugherty acknowledges feel good stories are easy to write and an integral part of baseball lore. ESPN has taken interest in Kramer as has the Speaker of the House John Boehner. Kremer already had some familiarity with the Reds. He served as batboy in August 2012 (his parents won a silent auction at a fund raiser and paid $300). According to Daugherty, Kremer has been batboy twice. The publicity has been uniformly positive. Again, this is where 99% of stories end--especially in sport reporting. But not this time. Daugherty argues that "its time to do better. Kremer's story can't end here. Worse, it can't continue the same as now, with Kremer the 30 year old man making cameos racking Reds bats, whenever the sentiment strikes. The mascoting of  Teddy has to end before it stops being wonderful and becomes something far less. These stories have to become more nuanced as our society has become more attuned with the lives of our citizens with disabilities. There is a subtle bend in the road, where good and right run head on into patronizing and exploitive. That curve hasn't been reached. But its just up there in the near distance. The next time Kremer is at Great American Ball Park it should be as an employee of the team". 

When I read the above I almost fell out out of my wheelchair. I read that passage again and again. Sports Illustrated bemoaning feel good stories? Sports Illustrated calling for a more nuanced understanding of disability? I am stunned. Reds chief operating officer  Phil Castellini is quoted as stating Kramer is "incredibly capable. He could do all kinds of stuff. I could put him in customer service any where in the building and he'd continue to put smiles on people's faces". Teddy Kremer's mother notes that her son has worked a few part time jobs and employment with the Reds would be a huge boost to his self esteem. She also soberly notes he would need to learn how to use the mass transit system.

The above is a radical departure from your typical story about disability. I have been energized by the fact this story appeared in a staid publication such as Sports Illustrated. This is about as mainstream as one can get. Buzzed on too much tea this morning I started dreaming big. The Reds could hire Kramer and many other capable men and women who have Down Syndrome. They could foster a relationship with the Down Syndrome community and become not just an employer but powerful advocate for people with Down Syndrome. I can dream bigger! Major League Baseball could become the spearhead for a work program for people with a host of disabilities. MLB could encourage (require) all teams to hire people with a disability. One could even make the case that every team employ a certain percentage of people with a disability. This could be marketed as the next great social revolution in baseball history. The effort could be tied to Jackie Robinson's legacy as the first black man to break the color line. Label this jobs program something catchy like "42's Legacy" and build the infrastructure for a jobs program. Just think of the exposure. Tens of millions of people who attend baseball games would encounter people with disabilities who are employed. This could truly revolutionize people's perception of disability. If Americans understand anything it is baseball and work. Wow, I am dreaming big today!

ADAPT Protests: A Veritable Black Hole

I have always deeply admired ADAPT. I half jokingly refer to them as the Special Forces of the disability rights movement.  ADAPT was formed in 1978, the year I was paralyzed.  Those interested in the disability rights movement are familiar with the history of ADAPT (American Disabled  for Attendant Programs Today). Briefly, ADAPT was started by 19 disability rights activists in Denver. These men and women surrounded a Denver bus at the corner of Colfax and Broadway.  Like virtually every bus in the United States, Denver mass transit buses had no wheelchair lift. 19 proud and pissed off people surrounded an inaccessible bus, disrupted service and loudly proclaimed they were not going to leave. It was civil disobedience at its very best. The Denver demonstration had a domino affect. Comparable protests took place in other cities. Success however did not come quickly. It was not until 1982 that Denver ordered 89 accessible buses. Other cities quickly followed Denver's lead, including New York City. Today, bus service in NYC and most major cities is reliable and accessible.

I have been thinking about the humble origins of ADAPT. ADAPT still exists and remains on the front lines of the battle for disability rights. In fact ADAPT has been in Washington DC protesting. Arrests have been made. 41 in fact. I would think this is a news worthy event. I recall last year ADAPT made the mainstream news in part thanks to the arrest of the actor Noah Wyle. Since ADAPT arrived in Washington DC a few days ago I have scoured various news outlets for stories. I found a grand total of none. Not one. Google the web: "ADAPT protests Washington DC" and one will find references to last year's arrest of Wyle. Not a word has been written about the actions of ADPT this year. Not one article in the Washington newspapers, Huffington Post, New York Times, CNN, MSNBC, etc. It is as though ADAPT is protesting in a black hole. I find this deeply disturbing. The visuals ADAPT presents are striking. Hundreds of people with every sort of disability one can imagine protesting. Long lines of wheelchairs going down the street. Juxtapose protestors with disabilities against the iconic buildings of Washington DC and one would think this would sell a lot of newspapers and get television viewers to tune in. Um, no. And thus I wonder why. Why is ADAPT being ignored by every major news outlet? I think the complete lack of attention is based on the deeply internalized belief that disability is first and foremost a medical issue. Disability is not about a disenfranchised population of people but rather a highly individualized physical deficit. I have railed against this line of thinking consistently as has ADAPT, Not Dead Yet, the Disability Rights and Education Defense Fund, and many other disability rights groups too numerous to mention.

As I see it, ADPAT actions in Washington primary aim is to galvanize the disability rights movement. I wish this were not the case. In fact I wish the media would give ADAPT the attention they deserve. Disability is a social problem--a point the vast majority of people do not understand. I find it fascinating how disability based bias is acted out. As Mary Johnson, long time editor of the Ragged Edge, pointed out  it is not as though people are taught to be biased against people with a disability. People are taught disability is different--again we people with a disability are "special". When we fly on a plane we need to special serves. We get a special education. We have special buses. We have special entrances to buildings. We have special schools. We have special lifts and elevators. None of this is taught. People suck up this idea of special like a sponge. I was think of this when I saw the video below:

As noted on the video the police completely ignored protestors that used a wheelchair. Instead the police go after a bipedal protestor and take him down with force. The police took down this bipedal man who could not hear because it is an ordinary event. The visuals are mundane. The outcome is clear: the man will be arrested and released. Why did the police utterly ignore protestors that used a wheelchair? I am willing to bet they dismissed the protestors that used a wheelchair without thought. This is how deeply ingrained disability bias runs. Perhaps I am wrong. Perhaps the police knew all their accessible paddy wagons were in use.  Maybe they were instructed wheelchair dumping was not permitted. Wheelchair dumping is a police procedure in which the police come up behind a person using a wheelchair and lift the back of the wheelchair up and dump the person on the ground. This is exactly the sort of imagery that makes the police look bad. You do not dump people out of their wheelchairs. This is socially unacceptable.

The only way to follow ADAPT is via their website and social media. See http://www.adapt.org/ Many people associated with ADAPT have been  posting photographs on Facebook. The images are striking and uplifting--note I avoided the word inspiring. ADAPT is uplifting in the sense I am encouraged that so many people are willing to devote their time and energy to a civil rights cause.  Many people are willing to travel to Washington and brave the streets where they could be subject to arrest. These people have my utmost respect. In the post 9/11 era I am not willing to take such a risk. While I admire people willing to to dissent and protest, I fear retaliation and arrest given the Patriot Act can be used and abused. I was shaken by the actions of the government in Boston. Martial Law was declared. Tanks and hummers were deployed. Black hawk helicopters flew over people's homes. The excessive show of force was a shock to me. The suspension of civil liberties, such as walking outside your door step, stunning. All this in the name of national security. All this to apprehend a 19 year old man. So yes I fear the national security state and am delighted to know some of my peers are willing to protest.

NYC Taxi Service: Bloomberg as Bigot

New York City taxi service is unique and in many cases reflects the culture of the city itself. If you use a wheelchair NYC taxi service is on par with Third World countries. It is uniformly bad--bad as in biblically bad. Taxi drivers as a group are uniformly hostile to any person with a disability. A special disdain exists if you use a wheelchair or have a guide dog and exhibit the temerity to hail a cab. Lots of tricks are employed, required really, to get a taxi in NYC. My friend Steve Kuusisto who uses a guide dog gets hotel doormen to hail a cab for him. I too have used this ploy. I prefer to ask a well dressed man or woman to hail a cab for me. I wait in hiding between parked cars. When the taxi stops I emerge and grab the door so the taxis cannot pull away. I have been cursed at, screamed at, and been called a bastard in many different languages. Gee, I get the feeling I am not a valued customer.

NYC taxi driver hostility has not changed much in the last twenty years. On the rare instance I hail a taxi I assume the driver will be hostile. Taxi driver hostility directed at people with a disability is significantly worse in my opinion. The increased hostility stems from the Bloomberg administration public and baseless opposition to making the taxi fleet, the so called taxi of tomorrow, wheelchair accessible.  Bloomberg has made some outlandish statements that are devoid of reality. My favorite was Bloomberg's suggestion that hailing cab from the street was too dangerous for a person that used a wheelchair. I also heard Bloomberg state it was too costly to make the taxis accessible. Worse yet, taxis would be heavier and less fuel efficient. Bloomberg noted taxi drivers in accessible taxis would be very far away from the passenger and would lose out on tips. None of Bloomberg's statements made to date have a foundation in truth. If you doubt me I suggest you read pretty much anything Simi Linton has written. She has spear-headed the opposition to Bloomberg and earned my utmost respect. Go Simi go! 

This morning I was surfing the internet and came across the following: http://www.accessibledispatch.com/ This site is fantasy land. It is so preposterous I do not even know where to begin. Accessible Dispatch is a slick little site. If you had never been to NYC or hailed a taxi in any city in the world one could think hey this is cool. Phrases such a "the city awaits you" and "its about inclusion" are highlighted on the welcome page. Under How it works is the following: "Once our service is requested, we will dispatch one of New York City's wheelchair accessible taxicabs directly to your pick up location in Manhattan. Accessible Dispatch is available 24 hours a day, seven days a week, and requires absolutely no advanced reservations, although you may place an advance service order if you so wish. There are currently 233 yellow wheelchair accessible taxicabs operating in the city of New York". A person that uses a wheelchair can send a text, phone call, use an app or order a taxi on line. Here is what the website and Bloomberg gloss over. There are over 23,000 taxis in New York City. 233 are accessible. The odds of finding an accessible taxi going by you are less than 2% In Bloomberg logic what is the best way to address this gross inequity? Create a dispatch service. Really? Somehow I do not feel ever so special. 

Imagine this: You need a cab. It is April. It is Friday at 6:30PM. A huge thunderstorm is approaching. It is windy and cold. You are near Madison Square Garden and the Knicks are playing. Taxi after taxi is blowing by you. And what does the Bloomberg administration suggest you do? Call or text for a taxi. How long will one wait? Um, till hell freezes over. Honestly, think about this scenario. Really think hard. Consider the ADA was passed into law 22 years ago. You use a wheelchair and according to the Federal Government have the same civil rights as all those bipedal people with their hands up hailing a taxi. Taxi after taxi stops for bipedal people. What are we people who use a wheelchair supposed to do? Call or text for a taxi? Use an app? Give me a break. Have you ever tried to use 311? Good luck with an endless chain of menus that go nowhere.  What gets me the most is the leap in logic made by the Bloomberg administration. Who uses a wheelchair? Meek jobless wenches such as myself happy for any handout the almighty bipedal humans will dole out. Our lives cannot compare to the honorable Mayor Bloomberg. And yes there I go again. The bitter cripple with a chip on my shoulder who wants to takeout all his anger out on others. What is not considered is where that anger is coming from. Could it be that I get the shaft every time I try to hail a taxi, get on a plane or a train? Could it be that my civil rights are violated virtually every time I go outside my home? This is where my anger stems from--commonplace and socially sanctioned bias. The word used to describe the sort of civil rights violations I experience is bigotry. Am I mad? You bet your ass I am. My anger has nothing to do with my paralysis or use of a wheelchair. My anger does not come from some pathological form of narcissism. It is never all about me. It is about the next person with a disability and the fervent wish that person does not encounter the same needless social and architectural barriers I had to dismantle. 

Addendum: Please see comments for correction from Taxis for All director. 

Shane Burcaw: Laughter is Not Always the Best Medicine

NOTE: I am not accepting any further comments unless new ground is broken. I would suggest reading this post and the long comment thread that has become repetitive.

Earlier this month I came across the name Shane Burcaw. Apparently this man wants to be on the Ellen DeGeneres show. Needless to say this effort did not impress me and I quickly concluded it was the typical use of social media by a young person. Apparently he created a twitter bomb to get the attention of Ellen, an effort that generated a little bit of press and much discussion on reddit. Thanks to Alice Wong I realize my quick dismissal of Burcaw was in error.  This man highlights a divide I have written about in the past: there is a dichotomy between people such as myself that came of age well before the ADA was passed into law and those that came of age after the ADA. I refer these two groups of people as pre ADA cripples and post ADA cripples. Part of the divide is simply age. I am 53 years old. Burcaw I believe just turned 21. I have a PhD while Burcaw is earning his BA. I am married, divorced and have a son Burcaw's age. We are at very different stages of life. It is important to note these basic differences because I am severely critical of young men and women, post ADA cripples, that have not been taught about the cultural implications of disability or the history of disability based oppression. In part I am happy some young people with a disability are blissfully unaware of the sort of civil rights violations that were once common place: forced institutionalization, involuntary sterilization, and ugly laws. Yet I am also stunned at how some young people with a disability use their disability. For example, I read Burcaw's blog Laughing at My Nightmare, and was taken aback at the repeated use of trite and uninteresting lines such as: "If you can take anything from my life, it should be that a positive attitude and sense of humor can go a long way toward overcoming your own problems no matter what they are." Burcaw is portraying himself as the plucky cripple who finds humor in his situation. He states he wants to make people laugh and thinks he is good at it. Using the old line from Readers Digest he believes laughter is the best medicine. He has even formed a non profit laughingatmynightmare.com and in some videos I have seen t-shirts with the initials LMN. 

Burcaw is sun shine yellow optimistic. I do not share Burcaw's optimism. I do not find him funny. In fact, he has cast himself into the deep end of the inspiration porn pool. The short video "Happiness is Always an Option" is typical inspiration porn: http://thechive.com/2013/04/10/happiness-is-always-an-option-video/ Burcaw is characterized as having "just about the best attitude a human can hope to have".  Others repeatedly state Burcaw is extremely courageous and inspirational. He is funny, smart and brave. His story will blow your mind. Burcaw chimes in and states "Don't underestimate the power of a positive attitude". The mainstream media is sucking up Burcaw's inspiration porn like it is nectar of the gods or mothers milk. In contrast I sit stone faced and wonder what sort of person could possibly take this seriously. If you tube is any indication the vast majority of people think Burcaw is awesome. At you tube, My Last Days: Meet Shawn Burcaw, is twenty long minutes of platitudes. It has been viewed over 100,000 times since April 8 when it was posted. The video has been liked by over 4,000 people. A mere 21 people, yours truly included, disliked the video. Almost 700 people left comments and about 99% used the word inspirational.  I just do not have the heart to embed this video. 

Scott Hamilton, a former Olympic figure skater who had cancer, once used the line "the only disability in life is a bad attitude". This tag line has been used repeatedly in inspiration porn. Good  visuals, meaning the more disabled a person is, the greater the impact  the tag line and photo can have. The most well-known visual porn photograph I am aware of featured Oscar Pistorius running next to a little girl who, like Pistorius is a double amputee. When I see this photo I am not impressed. In fact I get angry at the disparity between the image and reality. I also think of Stella Young, an Australian disability rights advocate, who wrote "The statement the only disability in life is a bad attitude puts the responsibility for our oppression squarely at the feet, prosthetic or otherwise, of people with disabilities. It's victim blaming. It says that we have complete control of the way disability impacts our lives. To that, I have one thing to say. Get Stuffed."

Get stuffed Mr. Burcaw. Your superficial notion of optimism is demeaning. It is also devoid of any factual basis. Take the image and tag line discussed above. The prostheses depicted in the photo of Pistorious and the little girl cost $20,000. Those limbs cost more than a brand new Fiat or Ford.  Let me pose the following.  A child who is a double amputee goal is to compete in the ParaOlympics. To succeed at this level of athleticism the child will need specialized and costly prostheses. This child's parents request the local school board to purchase such limbs. According to a recently released DOJ guidelines a powerful case could be made the school would be legally required to make such an accommodation to insure the child be empowered to participate in sports. An optimistic outlook is not going to the job done in this instance. 

While I am railing against Burkaw in particular it is not him I am upset with. He is just one of many people that fails to realize inspiration porn shames all people with a disability. An optimistic outlook gets one only so far. The fact is Burcaw happily dismisses the glaring social problems associated with disability. The social situation people with a disability confront is not funny or inspirational. In fact to understand disability as an example of civil rights or human rights violations requires much thought and an intellectual leap in logic. Not many have made this leap in logic. It is all too easy not to mention rampant unemployment or the utter lack of accessible housing. No mention is made of inaccessible subway systems or the systemic pattern of abuse directed at people with a disability on the part of major airlines when they try to fly from place to place. Burcaw I would suggest should stop trying to get on the Ellen DeGeneres show and spend a bit of time reading about disability rights. There is a vast literature available at every major college in the country. In fact I have an even better suggestion. He should join ADAPT and join those that will soon descend upon Washington DC.  

ReWalk: A Plea for Common Sense

I have blasted news reports that gush about the exoskeleton. Typical news stories consider the exoskeleton a "miracle" that enables paralyzed people to walk again. References to Iron Man abound as do comparisons to being "wheelchair bound" versus being a "super hero". The message is not subtle: walking is the best means of locomotion. Using a wheelchair is inherently bad. A wheelchair is an antiquated piece of technology and the exoskeleton is here to rescue paralyzed people who are "bound" to their wheelchair. This line of reasoning is misleading at best and relies on ignorance. From my perspective, I think a wheelchair is a phenomenal invention. It makes my life go. It makes the lives of millions of people go. It is essential technology with a long history of success. A wheelchair is a powerful symbol of empowerment. This is not the way the vast majority of people perceive a wheelchair. In fact the wheelchair is the symbolic icon for all things disability.

While I despise the symbolic implications of the exoskeleton, I will acknowledge it is worthy of research. The human body was not designed to be paralyzed. I know this from first hand experience and I cannot recommend the experience. There are a host of health related problems associated with paralysis. There are also a host of solutions for paralysis specific health problems. With time, education, social supports for needed durable medical goods virtually all health related problems associated with paralysis can be avoided. I am extremely skeptical of the clinical use and utility of the exoskeleton especially when compared to well established rehabilitation methods. There is no escaping the fact the exoskeleton is sexy. There is also no escaping the fact traditional rehabilitation is decidedly un-sexy. Since the first Iron Man movie came out in 2008 the exoskeleton has been at the forefront of the imagination. It is fun to imagine a man in the exoskeleton hurling cars. No need to ticket or tow a car out of handicapped parking! Reality however is quite different.

The exoskeleton emerged from the military industrial complex. Corporations such as Raytheon and Lockheed Martin have gone through a host of exoskeleton type devices. The military use of the exoskeleton is not hard to figure out--musculoskeleton injuries are the leading cause of disability among soldiers. These injuries could be prevented if soldiers could carry more weight without straining their bodies. Enter the exoskeleton. As near as I can determine Raytheon is out o the exoskeleton business. Lockhead Martin has the "Human Universal Load Carrier" (HULC). The Defense Advanced Research Projects Agency (DARPA) appears to have already abandoned the hard exterior shelled exoskeleton in favor a "warrior web". This may sound cool but is not. Gone is the idea of super soldiers throwing cars and tanks and enter a light weight suit that empowers a soldier to carry heavy loads without strain on the body. The point I am trying to get at is that the exoskeleton is a cash cow. Commercially the biggest beneficiary is Ekso Bionics, a California based company. Ekso Bionics has been working very hard to get the exoskeleton into rehabilitation hospitals and the homes of paralyzed people. This worries me. Russ Arnold, the chief technology officer at Ekso Bionics has stated "Our goal is to get the exoskeleton out to the home. Instead of going to a rehab center they can do rehab in their home". I am sure this is music to the ears of health insurance companies. Think of the savings! No rehab. No nursing. No physical therapy. No Occupational therapy. No expensive durable medical goods. We can just buy an exoskeleton and be done with a potentially expensive life. It is no wonder the cure industry and health insurance companies are thrilled with the exoskeleton. This is one stop shopping.

The media buys into the utility of the exoskeleton without reservation. Everyone wants to walk. This is a given. The exoskeleton is the essence of cool. The rehabilitation business loves the exoskeleton too. It is the best, newest and most advanced form of technology. We can hire a bunch of technology guys and do away with as many health care professionals as humanly possible. And we all know technology can cure all our problems. Talk about a patient magnet! Thus when I read about the exoskeleton in the newspapers my heart sinks. Newly paralyzed men and women are going to be seduced into thinking they will walk again. Remember walking is good being wheelchair bound is bad. Again, it is possible the exoskeleton has some utility. I differ in that I cannot escape at what cost, symbolic and practical, will the exoskeleton have?

The New York Daily News had a long story about the exoskeleton: "Bronx VA Doctor Helps Paraplegics Walk with Exoskeletons". See link: http://www.nydailynews.com/life-style/health/doctor-helps-parapalegics-walk-exoskeletons-article-1.1315915?print The article in question is typical superficial heart wrenching crap. Ann Spungen, lead researcher and MD gushes "In 22 years that I have been working in this field, its the most exciting intervention to come along". Apparently the exoskeleton is being studied at the James J. Peters VA Medical Center in the Bronx. Nine men and women who are paralyzed are involved. The VA is using the $60,000 Israeli  model called the "ReWalk". According to the Daily News the "ReWalk has been a "life-changer". I agree. The ReWalk could change lives but not for the reasons lauded. The VA and its researchers have far more modest goals. Funding provided by the National Institute for Health (NIH) is designed to demonstrate that the "exoskeleton walking device permits investigation of the potential benefits of frequent upright posture and walking on many of the secondary consequences of spinal cord injury. The exoskeleton is about walking within very strict parameters. The exoskeleton is being studied to perhaps alleviate the "extreme sedentary lifestyle from paralysis that contribute to many secondary medical problems such a diabetes and insulin resistance, obesity, constipation, poor blood pressure regulation, cardiovascular disease, reduced quality of life and more". 

Technically the headline of the Daily News article is correct. The ReWalk is helping paralyzed men and women walk again. This effort however has nothing to do with functional walking. Thus I find the story grossly misleading. The ReWalk is about walking as it relates to well-known complications associated with paralysis. This is not a sexy story but the reality of life with paralysis. I doubt people want to hear about how the bowel habits of the participants that have changed for the better.  Comments such as "I am no longer constantly constipated and my blood pressure is rock solid" does not sell newspapers.  What struck me though was the purpose of the study conducted by Ann Spungen: "the extreme sedentary lifestyle from paralysis". Why is the all important question here. Why do many paralyzed people experience secondary medical complications caused by an extreme sedentary lifestlye? I can think of much better approaches to this. Provide an extended rehabilitation experience. Do not discharge a person until they have firm control of their bladder and bowels. Be sure a person is aware of the complications associated with paralysis and knows what to do if something occurs.  Provide your typical paraplegic, male or female, with a state of the art and well fitted wheelchair. Design an exercise program for this person and expose them to a host of different adaptive sports programs. This is why I seethe when I read about the exoskeleton. Researchers are happy to shell out $60,000 on an exoskeleton. But the same researchers will never get to funding for a high end Panthera X wheelchair that costs $11,000. Forget about a handcycle for biking. They cost $3,000 and up. No sit ski either. These cost $4,000 and upwards. How about a racing wheelchair for exercise. No chance. Forget about a good wheelchair cushion to prevent pressure sores. These are too costly as well. And what about a job that requires a typical commute and empowers a paralyzed person?

Lets do a little basic math. Exoskeleton $60,000. This will require computer expert and multiple specialists in health care who earn a good living. Contrast this with a research program that after exposing a person to various outdoor activities will purchase the following: $11,000 wheelchair, $500 wheelchair cushion, a $5,000 handcycle, a $4,000 sit ski and most importantly a job training program that allows for an initially flexible schedule. Total material costs are a little over $20,000.  I would be willing to bet a newly paralyzed person that received this sort of support would thrive. I bet an extreme sedentary lifestyle would be unimaginable. The sort of program I suggested can change lives for the better after a spinal cord injury. Instead a questionable military based idea gets all the funding. This is the perfect storm of misplaced symbolism associated with walking, corporate spin, and profit, combined with our love affair with technology.

Here is what I envisioned two summers ago over a camp fire in the Red Woods outside of Santa Cruz. I will admit some drinking of adult beverages was involved. The men present at this campfire decided to form a club called Shit and Piss. If we could get every man and woman who was paralyzed to shit and piss with ease the world would be a better place. Classic lines were exchanged such as "Man, the way you manage your bladder sucks". Much laughter ensued. Better yet, there was an endless supply of duct tape. Joking aside, the vast majority of problems associated with paralysis can be mitigated. What is absent are the social and practical supports that make one's life possible. We people who experience a paralyzing injury do not need the exoskeleton. Our needs are more basic: a good long lasting wheelchair and cushion, affordable adaptive sport gear if desired, job training, transportation, and housing. With these typical needs in place an extreme sedentary life will be easily avoided.