It has been difficult to watch the news since last Sunday night when President Obama announced Osma bin Laden was killed. The media frenzy has been intense. CNN must be thrilled; it is a classic example of media over saturation in the extreme. I am disgusted by the entire discussion. I understand but found the so called spontaneous celebrations disheartening. I was left with little doubt why most people in the Middle East hate the United States. What do they know of us? Armed soldiers and bombs that reign down death with regularity. What has struck me about the media is the endless news loop that we Americans are fighting for freedom. This has me thinking about the meaning of freedom as we know it. Americans have been fighting for the concept of freedom for over two hundred years. We have had good wars, World War II, bad wars, Vietnam War, police actions, Korean War, and now we have the endless war, the war on terrorism. It struck me last night as I watched yet another story about the death of Osma bin Laden that fighting for freedom has become a ritual. If we Americans are not fighting for something, exposing an injustice, or celebrating our freedom we are at a loss for words. We have been so busy fighting we have forgotten what exactly it is we are fighting for. It feels to me we are fighting to fight. Worse yet, we no longer have a way of measuring our supposed success or failure. Was killing Osama bin Laden good or bad for the war on terrorism? Check in at 11PM for the latest poll results.Is it not possible to think for ourselves? Do we really need a poll to tell us how to feel?
What does the above have to do with disability? If we value freedom above all else, civil liberties, what we now call civil rights comes in a close second place. we are all taught racism is bad, very bad. This is a good lesson many fail to learn. Racism is alive and well in spite of the fact we elected a black man president. In much the same way, just because we passed the ADA 20 years ago bias and discrimination did not suddenly end. This point was made forcefully by John Hockeberry. I recently attended a lecture he gave at Columbia University entitled "A Law is Just the Beginning: 20 Years of Americans with Disabilities Act". As usual, Hockenberry was an engaging and entertaining speaker. He has the rare ability to make one laugh and think at the same time. As Hockenberry talked I realized what a jerk I was when the ADA was passed. I really thought the country was going to be revolutionized. I honestly swallowed the rhetoric hook line and sinker. What a rube! I am no more equal today than I was 20 years ago. Architectural barriers abound. Social oppression though no longer blatant is still present in an ever so polite socially sanitized form (see inaccessible taxis for the future I posted about). These thoughts came to me as I was inspired to reread Hockenbery's memoir Moving Violations. Hockenberry's book is outstanding. I loved it when I first read it in 1995 and it has withstood the test of time--my time that is. Hockenberry's work still resonates deeply within in me. His experience reflects my experience. We were both paralyzed in our late teens, came of age before the ADA, and felt great self imposed pressure to excel. In terms of the present discussion, one passage in his book jumped out last night as CNN droned on.
What we call civil rights in America is people jumping through hoops for their freedom, then having their scores tallied like figure skaters in the Olympics. Uppity niggers score low, so do illegal immigrants, and welfare mothers and crips who ask too loudly why there is no ramp into the theater. "We fought for it, so it's only fair that you should have to". It is America's real declaration of independence that poisons and isolates Jews, Asians, and whites from each other. It is less about race today than it is about this brutal free-for-all of who gets what, who deserves more, who's being fair, who's taking advantage". pp. 351.
Wow, does this reflect my experience in the last decade. No one really cares about access or civil rights for people with a disability but rather does the school, work place, or bus conform to a poorly written law no one except a lawyer reads. The concept, the idea of freedom and civil rights are not even worthy of discussion. This makes me mourn for a time before the ADA existed though I do not want to relive those days. Prior to the ADA I knew who was my friend and who was a foe. Today, I have no idea. The person that slaps me on the back and gives me a big smile hello could be the same person that bitterly complains about the money "wasted on special needs" kids at school board meetings. I wish I had a solution to the vexing problems I have risen. Indeed I am ready to throw up my hands and say enough, I do not give a damn! Of course, I cannot do that. It is just not possible. I am too much of a hard ass to give the bigots of the world the satisfaction who ever they may be.
Paralyzed since I was 18 years old, I have spent much of the last 30 years thinking about the reasons why the social life of crippled people is so different from those who ambulate on two feet. After reading about the so called Ashley Treatment I decided it was time to write a book about my life as a crippled man. My book, Bad Cripple: A Protest from an Invisible Man, will be published by Counter Punch. I hope my book will completed soon.
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Thursday, May 5, 2011
Civil Rights American Style
PhD 1992 in anthropology Columbia University, I am interested in disability rights and bioethics.
Wednesday, May 4, 2011
NYC Cab of Tommorrow: A Bipedal Only Cab
Mayor Bloomberg announced the winner of the "taxi of tomorrow" winner. The winner is a a suburban mom mobile, the Nissan NV200. The taxis that will come to dominate the city has lots of features people want. Passenger airbags, a GPS system, USB charging ports, separate climate controls, sliding doors, see through roof, and it gets 25 mpg. The contract between Nissan and the city will last 10 years and is worth about $1 billion in sales. Mayor Bloomberg is thrilled. He stated "It's going to be the safest and most convenient cab the city has ever had. They will be custom designed to meet the specific demands of carrying 6000,000 passengers a day in New York City traffic".
I have no idea if Mayor Bloomberg made the right choice in selecting the Nissan NV 200. But I do know Bloomberg and the Taxi and Limousine Commission do not give a damn about wheelchair access. Yes, I suppose we pesky people with a disability, especially those that use a wheelchair, are not part of the future. It is hard to get excited knowing that of the 13,237 taxis in New York City a grand total of 240 are required to be accessible. Getting a cab in New York City is never easy for a person that uses a wheelchair. In my experience a NYC cabbie would rather pick up a deranged and armed gunman before stopping for a person that uses a wheelchair. If you think I exaggerate I suggest you try to hail a cab using a wheelchair. The so called "taxi of tomorrow" is yet another sign of inequality. It is a not so subtle fuck you to every New Yorker that uses a wheelchair. In fact., I think it is an in your face sort of fuck you. We crippled people are not part of the past, present, or future. What this means to me is that for the next decade or more getting a cab in New York City will remain problematic at best. Yes, the cabs will transport 600,000 people. 600,000 people that can walk. We people that have a disability and use a wheelchair are screwed. Worse yet, I am not surprised. This is just another example of how people with a disability always seem to get the shaft. It is so common, so expected, it does not even merit shock and indignation. Only one story I read about the "taxi of tomorrow" even mentioned the lack of wheelchair access. Where is the outrage? I am mad as hell and seem to be the lone voice of dissent. How is that we have an amenity laden cab and yet one that is not accessible. The reason is simple: we value a GPS unit, we value USB ports, we value a sun roof, sliding doors, air bags etc. We value these things. They are part of the fabric of our lives. Today, I realize my existence as a New Yorker is not as important as material things. What a sad but not surprising commentary.
I have no idea if Mayor Bloomberg made the right choice in selecting the Nissan NV 200. But I do know Bloomberg and the Taxi and Limousine Commission do not give a damn about wheelchair access. Yes, I suppose we pesky people with a disability, especially those that use a wheelchair, are not part of the future. It is hard to get excited knowing that of the 13,237 taxis in New York City a grand total of 240 are required to be accessible. Getting a cab in New York City is never easy for a person that uses a wheelchair. In my experience a NYC cabbie would rather pick up a deranged and armed gunman before stopping for a person that uses a wheelchair. If you think I exaggerate I suggest you try to hail a cab using a wheelchair. The so called "taxi of tomorrow" is yet another sign of inequality. It is a not so subtle fuck you to every New Yorker that uses a wheelchair. In fact., I think it is an in your face sort of fuck you. We crippled people are not part of the past, present, or future. What this means to me is that for the next decade or more getting a cab in New York City will remain problematic at best. Yes, the cabs will transport 600,000 people. 600,000 people that can walk. We people that have a disability and use a wheelchair are screwed. Worse yet, I am not surprised. This is just another example of how people with a disability always seem to get the shaft. It is so common, so expected, it does not even merit shock and indignation. Only one story I read about the "taxi of tomorrow" even mentioned the lack of wheelchair access. Where is the outrage? I am mad as hell and seem to be the lone voice of dissent. How is that we have an amenity laden cab and yet one that is not accessible. The reason is simple: we value a GPS unit, we value USB ports, we value a sun roof, sliding doors, air bags etc. We value these things. They are part of the fabric of our lives. Today, I realize my existence as a New Yorker is not as important as material things. What a sad but not surprising commentary.
PhD 1992 in anthropology Columbia University, I am interested in disability rights and bioethics.
Tuesday, May 3, 2011
Money: How it is Spent Makes No Sense
A few days ago I read about my favorite invention I love to poke fun of--the human exoskeleton that enables paralyzed people to walk. Today I read 89 protesters from my favorite disability rights group, ADAPT, were arrested in Washington DC. What do these two disparate stories have to do with one another? Money stupid! Rex Bionics, a New Zealand company, has just sold its first custom fitted robotic exoskeleton to Dave MacCalman. MacCalman has represented New Zealand in the Paralympics, winning gold and silver medals. The exoskeleton is, in my estimation, silly in the extreme. In fact the words pointless waste of resources come to mind. And when it comes to resources much was spent. The exoskeleton took seven years and $10 million in development costs. Read that sentence again--carefully. And exactly how much does an exoskeleton cost? It retails for nearly $150,000 USA dollars. That is a lot of money. Now if I had a spare $150,000 I would not spend it on an exoskeleton. No, I would spend such money wisely. I would buy a high end sports car. A Porsche 911 Turbo that retails for $135,500. I would even have money left over to buy gas, go up to 135 mph, have 500 horse power, get 24 miles to a gallon, and be able to go from 0 to 60 in less than three seconds. This is may not be what everyone needs but it sure is valued by some. The point here is that the exoskeleton is about as practical as a Porsche 911 turbo. Practical or not we value such cars, priceless engineering, and walking. Walking is very nice. Driving a Porsche 911 is very nice too. But are either really important in the bigger picture of life? Not in my opinion. Would it nice to be able to walk around my house? Yes it would but it is nothing to aspire to nor is it worth spending $150,000. Waking does not define who we are as humans any more than the Porsche 911 turbo defines car making.
The exoskeleton and Porsche 911 are feats of engineering that are not needed. There are far more important things in life than the ability to walk or drive a car that costs $150,000. This is what I was thinking when I read about the 89 people from ADAPT that got arrested. ADAPT was protesting Paul Ryan's Medicaid plan that would force people with a disability into a nursing home rather than live in their own home. The issue as I understand it would turn Medicaid into block grants and reduce spending by more than $700 billion over ten years. The protesters were arrested by Capital Police for occupying the rotunda. I wish I was there for I know how sound travels in a rotunda. I bet they were loud and confrontation. ADAPT people get what is important. People with a disability, like all those pesky people that can walk, value their independence. This is something we as a society should invest in--independence and autonomy. No one can be independent and autonomous in a nursing home. In an institution you do not control your own destiny. Why we do not seek to empower people is a mystery. Why we spend invest, develop, and spend millions on things, material objects such as an exoskeleton and Porsche 911 turbos is a mystery. Which is more important, a material object, albeit a very cool one like a Porsche, or people's lives?
The exoskeleton and Porsche 911 are feats of engineering that are not needed. There are far more important things in life than the ability to walk or drive a car that costs $150,000. This is what I was thinking when I read about the 89 people from ADAPT that got arrested. ADAPT was protesting Paul Ryan's Medicaid plan that would force people with a disability into a nursing home rather than live in their own home. The issue as I understand it would turn Medicaid into block grants and reduce spending by more than $700 billion over ten years. The protesters were arrested by Capital Police for occupying the rotunda. I wish I was there for I know how sound travels in a rotunda. I bet they were loud and confrontation. ADAPT people get what is important. People with a disability, like all those pesky people that can walk, value their independence. This is something we as a society should invest in--independence and autonomy. No one can be independent and autonomous in a nursing home. In an institution you do not control your own destiny. Why we do not seek to empower people is a mystery. Why we spend invest, develop, and spend millions on things, material objects such as an exoskeleton and Porsche 911 turbos is a mystery. Which is more important, a material object, albeit a very cool one like a Porsche, or people's lives?
PhD 1992 in anthropology Columbia University, I am interested in disability rights and bioethics.
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