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Friday, August 24, 2012

ESPN Discontinues Mono Skier X

I am a big fan of the winter X Games. Obviously my favorite event is Mono Skier X. The best mono skiers compete head to head.  ESPN had a serious commitment to the event and it was a flat out cool event to watch.  You could see big air, big crashes, close finishes and best of all it appealed to all people not just those with a disability that ski. I saw this first hand. I watched more than a few mono ski races in bars and found it amazing to see able bodied people not only get excited about the mono ski race but cheer wildly. I was also delighted to know mono skiers earned the same amount of money as other athletes at the X Games. 

The Mono Skier X was not the only event to get cut. Snowboarder X and Skier X were cancelled. ESPN has been vague at best as to why the events were cancelled. No single factor was sited.  One mono skier stated:

It's definitely perplexing," 2011 Mono Skier X gold medalist Josh Dueck said. "It's not the only mono skiercross race, but in my eyes it is because it does it on a level no other event matches. There's no better exposure we can get for our sport. And right now we're young and growing exponentially. This is a huge, huge hit to the evolution we're seeing. It's hard to digest.
The loss of the Mono Skier X is particularly unfortunate as the event was gaining serious traction. There was what I like to call a serious cool factor associated with the mono skiers. This interest was important in that those that watched the event were likely to be supportive of average adaptive skiers--ordinary weekend warriors like me. This in turn would benefit adaptive ski programs in a myriad of different ways. IN short, this is bad news and I hope mono skiers will not be disproportionately affected. 

Wednesday, August 22, 2012

Tony Nicklinson Dead:

The BBC has reported Tony Nicklinson has died just a week removed from his failed effort to convince a British High Court to allow a person to give him a lethal prescription. I have followed the stories about Nicklinson who was "locked in" after a stroke in 2005. He was very clear he considered his life a living nightmare and that he wanted to die. I found Nicklinson's comments about his life and suffering distasteful. I also believed his words were destructive to people with a disability as they reinforced the antiquated idea that death was preferable to life with a disability. What I found hard to fathom was Nicklinson's contention that his life was a living nightmare never changed. He was consistently miserable and believed his suffering was singularly unique.  Yet Nicklinson was in many ways lucky. He had a wife who was supportive and two children that clearly loved their father. He did not go into bankrupt paying for care. He was able to communicate even though it was a tedious process. I am not dismissing the fact being locked in is extra-ordinarily difficult. I am merely pointing out that Nicklinson was not singularly unique. In fact the only thing that made him unusual was his consistent misery. And the media loves miserable people with a disability. Pity stories abound and a man like Nicklinson provides great visuals. Pity the poor man pictured with his wife and children. No mainstream media outlets write about all the other people with comparable conditions that move on with life--and this is exactly what the vast majority of people with a disability do. We move on, adapt and lead ordinary lives. This does not sell newspapers. This does not make people cry. This does not make people thank God they can walk and talk and do not have a disability.  This line of reasoning is maddening. And this is exactly why I have refrained from writing about Nicklinson. He pronouncements about his life being a living nightmare simply made me mad. Apparently I am not alone. This morning I read "Self Pity is Still Not Lethal! On Tony Nicklinson" written by Miss Dennis Queen (was Claire Lewis). See She wrote:

Know what it isn't easy for some of us crips. To sympathise, I mean - Tony's attitude is quite offensive.I am tired of the pitiful debates. I am exasperated with this dishonest man who admits denying himself a better life but blames it on his body.  I agree Tony needs to see his doctor - not for a lethal injection, for some anti depression support and a kick up the proverbial about how life can get much better if he puts down his fear and self loathing and lets it go.Come on Tony! Give life a go  - almost all of the rest of us manage without suicide. Try living before you throw your life away dude!

I was thrilled when I read the words above. Miss Dennis Queen has been one of the most eloquent and pointed observers on disability rights and assisted suicide in Britain for quite some time. Once done illustrating how far off base Nicklinson was  Miss Dennis Queen went on to state "The reasons for 'helping' disabled people to kill themselves are flawed and rooted in prejudice, internalised oppression, lack of independent living and scare mongering / fear about the future". At issue is not a bodily deficit regardless how severe or mild it may be. At issue is the social response such a body prompts. Thus I do not in any way want society to "help" me. I especially do not want any assistance with my death. I simply want to be equal--I want others to respect my life. I want people in this country to enforce the ADA with rigor-- a law that is not about architecture but rather the civil rights of people with a disability. In short, screw pity. Let's reframe the discussion to what is is really all about--civil rights. 

Monday, August 20, 2012

Fay Vincent in the Wall Street Journal

I never liked Fay Vincent, the former commissioner of baseball. I did not know until August 16 that Vincent has apparently started using a wheelchair. In the Wall Street Journal Vincent wrote an editorial, "Where the Disabled Are'nt Welcome". I was not impressed. Vincent's editorial is a polite plea for businesses and society in general to become more inclusive to people with a disability. Only one line resonated with me:

Even well intentioned legislation cannot specify what is needed to accommodate those of us who are made to feel subhuman by unintentional failures to provide suitable facilities. I know all the excuses".

Vincent is seeing an unsavory part of American society for the first time. I suspect this is quite a shock for Vincent as his professional associations are with spectacularly wealthy people such as men who own baseball teams. Welcome to my word Mr. Vincent. I am not "stunned" as Vincent is when I come across new buildings that are grossly inaccessible. This is part of my daily life.  I appreciate Vincent's words and support but a life time of experience has led me to conclude polite and reasonable requests for equal access gets people with a disability nowhere. I expressed this sentiment to a friend who also read the editorial by Vincent and he believed I was being difficult. I was told "things have changed since you were paralyzed. People support the ADA. You are looking for a fight". I laughed in response and held my tongue. I saw no reason to demonstrate how wrong my friend was. Vincent's editorial is very important but not in the way most will think. It is not his words that natter but rather the response generated. As of today, 88 comments have been posted to the editorial. I would estimate 90% or more are opposed to the ADA.  I expected this--the ADA is grossly misunderstood. I will readily admit I did some cherry picking to highlight just how far off base people are when it comes to the ADA. Below are many juicy quotes that raised my blood pressure more than a few notches.

“Scammers use ADA to blackmail businesses (larger and small)" 
“His claim is just emotional exaggeration”
 "Business owners are asked unfairly to shoulder burden alone"
 "I know a dozen of such corners [curb cuts] that I’m guessing cost 100k minimal".
 "I don’t think its right to require all businesses make adjustments to suit a few people so their feelings aren’t hurt". 
"Oh here we go again with the snide accusations of thoughtlessness and condescension. You’re hurting your own cause".
 "I had a discussion not long ago with two people who wanted a law forcing all software manufacturers to optimize their programs for the blind… I pointed out the obvious difficulties and costs involved in making sure 0.1% of the population can use every app they might ever want to… I was promptly called an assortment of bad names".
 "The ADA has generated a lot of hostility because its approach is heavy-handed and punitive".
 "The world is full of selfish and self-centered people who take access for granted and assume that if they’re taken care of then all’s right with the world".
 "The ADA comes with force. The force of the State".
 "It’s so sad to go to a small hotel with a pool and see handicap access contraption collecting dust in the corner".
 "The ADA is a bridge too far".
"Hey, I’m a lefty. You don’t hear us complaining. We’ve learned to make do".
 "I appreciate the challenges you face, Mr. Vincent, but it seems awfully selfish of you to expect the world to reconfigure itself based on your specific needs at no cost to you".
 "George HW Bush made a HUGE mistake with this bill… This law has forced closure of some long run businesses and been a HUGE waste of taxpayer money".
 "Under the guise of compassion we have bastardized laws that do less for their intended purposes and more to line the pocket of some lawyer".
 "Mr. Vincent’s complaint involved a luxury hotel and prominent Manhattan’s men’s club. From that I can conclude Mr. Vincent could afford a valet when he travels".
 "He sure was strident".
 "I believe the ADA to be an overreach and over burdensome".
 "The disabled certainly cannot be expected to disassociate themselves from normal participation in society , and a civil society owes an obligation to its less fortunate citizens to provide accommodation reasonable to its standards and resources. Yet, the cost of access by some, the few, or in our case the none, jeopardizes the viability of entity itself".
 "No matter how much we spend, we cannot make the handicapped unhandicapped: it is just not possible".
 "My father, may he rest in peace, was handicapped… He always found a way to overcome his infirmity".

I have heard variations on each and every one of the comments listed above. To me such largely ignorant and condescending comments reveal the larger social failure of the ADA. I will readily acknowledge the physical environment is far more accessible than it was when the ADA was signed. I will also acknowledge the law protects the civil rights of people with a disability.  But just because plastic blue wheelchair placards abound and handicapped parking is evident nationwide does not mean people with a disability are any more welcome today than they were two decades ago. What has changed is the way we approach disability from a cultural standpoint. We acknowledge the ADA exists and buildings, schools, and government offices should be accessible to all. Note the word should--it is still believed that one can pick and choose when to comply with the ADA. Thus when the cold hard reality of equal access and equal rights arises people abandon and ignore the law.  Extreme examples are raised--curb cuts cost 100k, adaptive equipment gathers dust in the corner at luxurious hotels--and use them to disregard the law. In place of access and equal rights "reasonable accommodations" are made. The problem with these seemingly benign words is that the people who decide what is supposedly reasonable know nothing about disability. What others find "reasonable" I find unacceptable. Let me provide a not so clear cut example.

Recently I attended an event at the Yale Club in New York City across the street from Grand Central. At the main entrance I saw a blue placard directing me to a locked accessible side door about 100 feet away. At the accessible entrance a clear sign read "please ring bell to enter". I rang the bell. The person who answered the intercom stated "I will be there shortly". A few minutes later a person opened the locked door and after five minutes or more figured out how to work the wheelchair lift. In short, it took at least ten minutes to enter the building. As I waited outside this spectacular building I watched people enter and depart and began to wonder exactly how reasonable was this so called "reasonable accommodation"? What would have happened if it were raining or frigid cold? What if a person did not answer the intercom which is in my experience is the norm. Not a single person that entered the building and saw me waiting outside believed my civil rights were violated by being forced to use a side entrance. I use this example because it is not a clear cut violation of the law. This example highlights the problem with the ADA--it is not thought of as civil rights violation. Was waiting ten minutes really a civil rights violation? On a clear lovely evening as I watched busy Manhattanites speed by the answer is no. But this minor inconvenience is far from an isolated event. Locked side entrances abound. Locked elevators and wheelchair lifts are the norm. Curb cuts are not cleared of snow after storms. Restaurants are impossible to navigate as aisles are too narrow. Forget about ordering a drink at a bar. Changing rooms that are accessible in department stores are locked. Accessible bathrooms are a true rarity. I wait an inordinate amount of time for assistance when I get off a plane. Most medical facilities are grossly inaccessible. Schools where I teach do not have accessible podiums. At conferences podiums are rarely if ever accessible. Hotels such as the Marriott Residence Inn have washing machines for guests that are not accessible. All these barriers are not necessary. If American culture valued the existence of people with a disability such barriers would be met with outrage. Such outrage does not exist. As the people who commented amply demonstrated we people withe a disability are supposed to "overcome" and adapt. We are expected to be thankful for any accommodation. If we assert ourselves we are too strident. Many think we who advocate for disability rights are bitter about our plight. The leap in logic people are reluctant to  make is that disability is a social problem with well established and tested solutions.  Is it any wonder I do not feel equal? Come on people, make the leap in logic, it is in your best interest.