Are My Views Extreme?

I woke up this morning and as usual looked forward to reading comments about my latest post.  I was pleased to see Elizabeth and Phil, two regular readers, as well as Catherine left comments. I was a bit taken aback by the comments. Elizabeth believes my views are as "extreme" as those I "excoriate". She also thinks the disability community response to "mercy killing" and "euthanasia" is "horribly simplistic.  I urge you to read the comment Elizabeth left in full. Phil also took me to task. He wrote that he does "not believe that when a person chooses to die that he or she contributes to the devaluation of the disabled or the very sick". Death is a right in Phil's estimation--a popular sentiment or belief in American society. We are rugged individualists one and all. Both Phil and Elizabeth if I understand them correctly believe death should not be feared--that is a part of life.

I tried to address the points above without much luck in a long reply. A good friend suggested a post rather than a reply was in order. As usual, my friend was correct. So, before reading further look at the comments left by Catherine, Elizabeth and Phil.

It was not my intention to "excoriate" Mr. Johnson or any other individual. I do my level best to avoid personal confrontation. Mr. Johnson has the right to express his views. I thought I treated his views with respect, the same respect I would hope he would treat my words with. I was in no way attacking his character or desire to die. I had no interest in "excoriating" him or any other person with or without a disability. To do so, would be utterly pointless and counter productive. As I have attempted in the past, I tried to use Mr. Johnson's as a spring board to highlight the gross inequities that exist when people with a disability access the health care system. Simply put, the health care system as currently constructed is hostile to people with a disability. Yet Elizabeth is correct that thousands upon thousands of people have worked tirelessly for disability rights. In the twenty plus years since the ADA was passed American society is more accessible physically and socially. This is a given. Much heavy lifting still needs to be done however.  And like it or not, lives are at stake. My life and Mr. Johnson's life are at stake. I suggest Elizabeth and others read my article, "Comfort Care as Denial of Personhood" in the Hastings Center Report. A physician strongly suggested death was preferable for me.  The physician could make my death happen. This did not take place in the decades before the ADA was passed into law protecting my civil rights. This took place in 2010 more than twenty years after my civil rights were supposedly protected. This incident shook me to the very core. It shattered my trust and confidence.  It took me a long time to come to terms with the fact a highly educated physician sincerely believed my life had no value. My death was the preferred course of action.  Perhaps the physician believed in euthanasia. Perhaps he believed he was being "merciful", that I had suffered long enough. Here I will agree with Elizabeth--there was nothing simplistic about the thought process. The views that led up to this incident are complex and culturally laden. They did not take place in a void. They took place in a well respected hospital and both of us brought much cultural baggage to the exchange. I believed my life had value while the physician felt it had none.  Our respective views were formed well before the incident took place.

Given the above, I vehemently disagree with Phil comment that he does "not believe that when a person chooses to die that he or she contributes to the devaluation of the disabled or the very sick". Phil is correct in that we do have the ability to "adapt" or chose not to "suffer" or to not be alone or decide a life is not worth living. I do not question this. We are entitled to our beliefs. I do question how such decisions are made. I do question whether we are really given a real choice. Disturbing ethical examples abound. For instance, a woman I knew became pregnant recently and she had tests to determine if her child would have Down Syndrome. The test was positive. She was given the results and a business card with a scheduled abortion date. Is this really a choice? Statistics demonstrate well over 90% of women choose abortion over having a child with Down Syndrome. To me, this is perilously close to a form of modern day Eugenics. Does using the word Eugenics make me an extremist or do I hold a simplistic viewpoint for using the word? I think not. Let me use one more example. A young man or woman in their early twenties is in a car accident. Suddenly they must learn to adapt to a high level spinal cord injury. How will this person adapt or will they choose not to adapt? Will this young person be told about sip and puff power wheelchairs and the world of adaptive sports? Will this person meet another well adjusted high level quadriplegic who is married and has children? I doubt it. I think it is far more likely this person will be shipped to a rehab center and quietly sent to a nursing home weeks or months later. Perhaps this person will become like Christina Symanski who chose to die. Again, I ask the question why. Why do some people choose to die? Why are some encouraged to die? Why do we have the resources to end the lives of those with a disability and in fact laud such people for their courageous actions? Meanwhile people like me, those that choose to live life to the fullest encounter discrimination decades after the ADA was passed. People like myself, disenfranchised and without power, are perceived to be an economic burden. Theoretically I share the same civil rights as others but I do not live in the world of theory. I live in a world that is hostile to my inclusion. I live in a world where I am repeatedly told I am a difficult person. Why am I difficult? I am difficult because I assert my civil rights. I point out injustices that make others uncomfortable. I am not silent. I am an uppity cripple. Here the obvious allusion is to so called uppity niggers that asserted their rights, civil rights no person would ever question today. Well, I am not near there yet. My civil rights are open to debate.

In all seriousness, it is very hard to express how hard it is for me and others with a disability to simply leave our homes. I know I will be stared at. I know I will encounter needless architectural obstacles. I know people will say demeaning things to me. Worse yet, none of these people that thoughtlessly violate my civil rights consider themselves to be bigoted. They are just "curious", "interested" or want to share their thoughts me. No consideration is given to my life, the inability to ever fit within the mainstream. I am public property. My existence open to good natured debate. Maybe this makes me an extremist. Perhaps Elizabeth is correct. I do live an extreme life.  People with a disability are socially isolated. People with a disability are unemployed in overwhelming numbers. People with a disability are far more likely to be uneducated. People with a spinal cord injury like mine are less likely to marry and have children. People with a disability often cannot access the health care system. People with a disability are likely to live in an institution.  I could go on but my point is clear. I do in fact live an extreme life.

Choosing to Die has Ramifications

Last night I read an editorial in the Spokesman-Review by Curtis Johnson. Mr. Johnson has ALS and it is rapidly progressing. He will die in the near future and he is not pleased with the Death with Dignity laws--see "Put Real Dignity in Choice to Die".  There are two thrusts to Mr. Johnson's editorial. First, the fact the lethal prescription in the state of Washington must be self administered which in Mr. Johnson's opinion renders the law useless for those who need it.  Mr. Johnson noted: 


"This leaves patients with the choice of ending their lives prematurely or crossing that threshold where they won’t be able to, thus damning them to a lingering end of dependence, misery and pain.  Left with this choice, I must go with prematurely ending my life."


The second point raised by Mr. Johnson concerns organ donation. He believes his organs could help others who will die waiting for a life saving transplant. He notes:


"Although my motor neurons are wasted, only my muscle tissue is affected. Otherwise I’m a perfectly healthy 55-year-old male. I exercised daily. My blood pressure is still 110/70, and my heart rate a steady 70. I have perfectly functioning lungs, kidneys, heart and liver.  There are candidates out there who could use my organs to save their lives. But even as a living donor, I am excluded from donating anything".


For those unfamiliar with assisted suicide legislation, likely the vast majority who will read Mr. Johnson's editorial, will be persuaded by his words. Mr. Johnson taps into very basic assumptions about disability and the end of life. For example, disability is a fate worse than death and that death is preferable when faced with a fatal condition like ALS. Mr Johnson wrote:


"I have become trapped inside a motionless body, a living mummy, a burden to those around me. The list of things I can’t do grows longer each day. My core is almost gone, and soon my arms and legs will become completely detached. Most of my muscles visibly vibrate 24/7.  All that constant contraction causes perpetual fatigue and tension headaches. My doctor tells me ALS is a painless disease and that there is no reason to consider suicide. Maybe I’m just a wimp. 

I am a social creature by nature, a party lover, invariably the last to leave. Now that my speech has lost its volume and become incoherently garbled, I find myself irrelevant in social situations. This isolation is every bit as painful as the physical pain and frustration imposed by ALS. Now, too, I am losing power in my arms and hands such that I type with one gnarled index finger and can no longer even pick up my iPhone."

Mr. Johnson is not a wimp. Mr. Johnson, like all of us, was not prepared to learn how to adapt to his condition. But adapt we do. In fact the vast majority of us when faced with a life altering disability or  those who are forced to deal with end of life issues adapt. Some struggle for years with Depression while others rapidly move on. Some are ruined financially due to medical bills that insurance refuses to cover. Some die gracefully. Some rage at death and become embittered. Some people with a disability adapt with grace and beauty. Very, very few choose to die--they are the exception not the rule. And here is where I am left angry. Why is it that only people like Mr. Johnson who want to die are given support. Why is it that paralyzed people that want to walk are lauded while those who adapt to paralysis and want adaptive devices to empower them are perceived as a social burden or an economic drain. 

When I read Mr. Johnson's editorial here is what I thought: why has no one spoken to him about brain scape or the myriad of ways he can communicate. I have met many respirator dependent quadriplegics, some with ALS, who lead rich and rewarding lives. Mr. Johnson can continue to have a rich and vibrant social life. While his condition is indeed fatal I see no reason why he cannot enjoy his life in the here and now. His words above are based on an implied social fallacy: life with a disability is inherently less, it is an existence that lacks dignity. People with a disability are not social beings. People with a disability cannot or do not socialize and are a burden on society.  No one delves into the why behind this faulty premise. For example, I do not visit any of my friends homes--friends who do not have a disability that is because I cannot enter their home. Steps abound as do needless architectural barriers at work, stadiums, office buildings, hospitals, athletic facilities, libraries, and the list goes on and on. This is not a medical problem this is a social problem. American society does not value the existence of people like me and Mr. Johnson. The physical environment is built specifically for those that are bipedal. Access issues are an after thought--something that must be included because the law states it must be so. Such access is not valued--it is merely a box that must be checked off.  

As for organ donation, Mr. Johnson's words sent chills down my spine--the chills only went to T-3, my level of paralysis and sort of wander down my side (a very strange sensation). Mr. Johnson's words are simply dangerous. What would happen to any individual with a high cervical spinal injury and more generally any spinal cord injury? Would this person become the ideal organ donor? Imagine if you were suddenly paralyzed, had never met a person with a spinal cord injury and knew nothing about disability. What would you think if you were told you will be paralyzed for the rest of your life? Would you be happy? Hardly. What if news of paralysis was followed by "you can be an organ donor and never live with paralysis". I have no doubt many would choose to donate their organs and die. This decision would be one based on fear and ignorance. Yes, disability may indeed be a fate worse than death. None of this even broaches the economic implications of long term disabling conditions. Simply put, it is expensive to be disabled. The other day I figured out that in the last 35 years I have spent nearly $25,000 on Roho Cushions alone. I shudder to think of what I have spent on basic necessities like catheters, wheelchairs, tires, inner tubes, medications, home renovations etc. Being paralyzed is an ever present economic drain. Would some choose to die rather than go into debt, declare bankruptcy and be forced to live in a nursing home? Worse yet, would organ brokers seek out paralyzed people. As Mr. Johnson notes our organs are perfect. Perhaps this sounds far fetched--too much like Soylent Green the classic science fiction film. I am not so sure. I am after all told once or twice a year by a total stranger that they would prefer to be dead than use a wheelchair. Don't take my word for it, Dr. Phil just had a show in which he advocated parents should be allowed to kill their disabled children. This was deemed "mercyful".  Frankly, I fear such mercy. I truly fear for my life when I enter an institution such as a hospital. I am fearful not of death but some "caring soul", a "professional" who thinks I have suffered enough.  

Cant' You Walk a Little Bit?

I flew from New York JFK Airport to San Jose recently. As usual, the experience was trying at best. Flying in the post 9/11 era is miserable. Security is designed to humiliate passengers into being subservient. Airlines nickel and dime passengers at every opportunity and there is a fee for everything.  None of this is news to anyone who has flown in the last few years. I am not your typical passenger and my experience is well out of the norm. I would love to have an ordinary experience—that is to be subject to routine degradation. But my degradation surpasses what bipedal people will ever experience.  If one uses a wheelchair you are sure to have a negative experience flying—it is the norm.

The hardest part of flying for me is the most basic—getting on and off the plane. Flying home to New York from San Jose on the Red Eye led to the following encounter.  In terms of problems one can encounter this was minor.  It made me yearn to be bipedal.

We have landed and the door to the plane is open. People begin to stream out of the plane and the stewardess states to the ground crew “We have one straight back, he has his own wheelchair in the belly of the plane”. A declarative statement. No problem you may think. Ten minutes later I hear the ground crew ask the stewardess “How many wheelchairs do you need?” The reply, “One straightback and he has his own wheelchair.” The flow of exiting passengers is now a trickle—parents with kids and seasoned travelers who just woke up. The ground crew looks into the plane and asks “How many wheelchairs?” Again, the reply, “One straightback, he has his own chair.” Another ten minutes go by.  At least twenty minutes have passed since the stewardess requested a straightback. Every passenger has exited the plane. The pilot and co-pilot have exited as well. Three women, ground personnel, look in at me. They stare, say nothing and exit. They return moments later with an airline wheelchair wide enough to sit two people. Without preamble I am told, commanded really, “Get in this chair”. The stewardess again states “He needs a straighback and he has his own chair”. Ground personnel look perplexed, do not reply and exit the plane again. Minutes later they return. They have my wheelchair now. Again, the ground personnel state “Get in the wheelchair”. Yet again the stewardess states “He needs a straighback. That is his wheelchair outside.” I look at her, she looks at me we both say “JFK sucks”.  The ground personnel look hopelessly bewildered. I am loudly told “Just walk a little bit to the wheelchair.” Maybe they think in addition to being paralyzed I am perhaps deaf. I state that I need a straightback. Ground personnel are taken aback. I am asked “You can’t walk a little bit?” No, I reply. The stewardess says “He needs a straightback”.  Yes, I say “I need a straightback”. Utter confusion reigns supreme.  Ground personnel are befuddled and one person asks the stewardess, not me,  “You mean he cannot walk at all? What do we do? How do we get him out of the seat?” Stunned silence ensues. I take a deep breath and remain calm. I state yet again I need a straightback. A look of confusion mixed with fear comes across the ground personnel and they ask me “Are you certain you cannot walk a little bit?” The stewardess and I just look at one another. In unison we say “we need a straightback”. Completely perplexed ground personnel leave the plane.  A few minutes go by. Not only have all the passengers left but the cleaning crew is on board the plane and they are looking at me and wondering why the hell is this guy still on the plane. Ground personnel return and they have the straightback. This tiny wheelchair is placed next to my aisle seat. I transfer into the straightback, position straps against my legs. The straightback is pushed all of the six or eight feet and then I transfer into my wheelchair. Time elapsed since landing: 45 minutes.  

Casey Martin Qualifies for the US Open

I have been relatively silent in the past two weeks. The reasons are pretty simple. I have been away from home for much of the time. Yesterday I was stuck in the car for the entire day. Classifying myself as "stuck in the car" is misleading--I love long drives. The longer the better in fact. Being in the car enables me to listen to the radio for hours. I have eclectic tastes--I listen to horrible local AM stations, especially talk radio. I listen to much music, mostly pre corporate rock. I listen to NPR outlets. Yesterday much of my time was spent listening to sports talk.  I find this sort of dialog mind numbing. However, yesterday was different. Casey Martin is back in the news. Casey Martin is unknown outside of golfing and his few minutes of fame took place when he sued the PGA Golf Tour in the late 1990s. Martin has a physical disability that makes walking inherently difficult and he believed he had the right to use a golf cart under the ADA on the PGA Tour. The use of a gold cart was in his opinion a "reasonable accommodation". The PGA and many well-know golfers vehemently disagreed. Martin won his case that was decided by the Supreme Court. In 2001 Martin was national news.  What was and was not a "reasonable accommodation" was widely discussed in the popular press. Sport fans were not happy. The PGA was predictably stuffy. What I remember most circa 2001 was friends asking me what I thought. I felt Martin was correct--using a golf cart was very much within the realm of the ADA. Using a golf cart was indeed a "reasonable accommodation". This was not a popular position to take. As I recall, people that engaged me wanted to know where do we draw the line? Was walking not an integral part of the game of golf? I believed then as I do now that Martin's use of a cart did not give him an unfair advantage nor did it change the character of the sport. In Martin's case, it simply empowered him to play the game at the elite level he had achieved.

I have not thought about Martin for ten years. He glided into obscurity after he failed to qualify for the PGA Tour. Apparently he has forged a new career as a golf coach in Oregon where he grew up and went to college. Against all odds, Martin qualified for the US Open this week. This has rekindled a debate about whether the use of a golf cart is indeed a "reasonable accommodation." In 2001 the attacks on Martin by professional golfers was vicious. Some classified his use of a golf cart as outrageous. Walking is part of the game! If you doubt this, many said, try walking 18 holes of golf. Fast forward eleven years and such inflammatory comments are hard to find in the mainstream press. Perhaps the last decade that has witnessed a veritable revolution in adaptive sports has made the general public open to reasonable accommodations of the sort used by Martin and other adaptive athletes. I am not sure this is the case. I would suggest discrimination is alive and well. I would also contend the fact Martin is a long shot at best to win is another variable. I have noticed that no one complains when a person with a disability participates against those without a disability--provided they lose badly--as in come in dead last. When a person with a disability actually wins is when other athletes and the general public complain. All of a sudden the athlete with a disability is not so "inspiring". Instead, the athlete that has a "reasonable accommodation" is perceived to have an unfair advantage. Oscar Pistorius is the best example of this line of reasoning. When he was winning in competitions against other amputees one and all were impressed. When he ran and lost against athletes with two legs no one complained. When he started defeating athletes who had legs all of a sudden he was not inspiring in the least. Instead his prostheses amounted to cheating.

The mainstream press is not interested in Martin. His participation in the US Open is filler. Golfing magazines and other specialist publications remain hostile. For instance, I just read the opening to an article "US Open and the Casey Martin Question" that began: "As we ramp up towards the U.S. Open that will be played at the Olympic Club, I have to get something off my chest: Casey Martin should not be playing at The Open this year." The author notes that Martin is "afflicted" with a birth defect that makes walking 18 holes of golf too painful. Under the guise of the ADA, the Supreme Court decided walking was not an integral part of the game and that Martin could use a golf cart. Blasphemy!  "Anyone who has played 18 holes will tell you walking is certainly a portion of the four-day tournament". Jack Nicklaus, Arnold Palmer, and Tiger Woods agree! Using a cart is akin to destroying the integrity of the game. Worse yet, why should Martin be allowed to have "special rules"? Why should Martin "ride easily in a cart for four days in the name of fairness".  The author of this opinion piece concludes: " the world is not fair.  I am sorry to spoil it for you.  As many times as we try to even the playing field we are doing it at another’s expense". 


The above line of reasoning is classic. We Americans are all born equal. We are rugged individualists. We pull ourselves up by our boot straps. Some people are not so fortunate. We have "special schools" and "special education" for them. We provide such accommodations out of the goodness of our hearts. We do not to consider individuals with a disability  to be equal to the all powerful bipeds for the author notes life is not fair. And my goodness what could be more unfair than a disability!  Thus Martin is not only a bad sport but hopelessly selfish. He is destroying the integrity of the game. He is ruining the sport for all. To me, this line of reasoning is twisted, hopelessly backwards. It is also common place. It makes me wonder exactly what has the ADA accomplished in the last 20 years. On bad days, I shake my head and conclude the ADA has done nothing. On good day, I think the exact opposite. The truth I suspect lies somewhere between these polar opposites. What remains my constant refrain is the underlying problem with not only the ADA but all legislation meant to empower people with a disability--the total lack of a social mandate. Culturally people object to the notion of any so called "reasonable accommodation". This runs counter to cultural ideals we learn and incorporate without thinking. We Americans are all equal. We must treat one and all equally. One succeeds through hard work and hard work alone. Special accommodations are bad--it  undermines our entire culture. Anyone with an ounce of common sense can read through this cultural ideal as utter fantasy--a fantasy we accept and propagate. The presence of people with a disability upsets the cultural balance. It is a reminder that "life is not fair".  Lost in this cultural quagmire is the simple fact that disability rights are civil rights.  Now that concept is worth thinking about and supporting. 

NDRN Report: Devaluing People with Disabilities

This is Curt Decker, Executive Director of the National Disability Rights Network speaking on the implications of the Ashley Treatment. Today the NDRN released a fascinating document: Devaluing People with Disabilities. When I first read the document I was not impressed. In fact I wanted to take the document and fling it across the room. I thought to myself, what a wasted opportunity. Then a funny thing happened. I realized my initial reaction was largely wrong. Sure I would have taken a different approach. I would certainly not have used some of the selected experts. I absolutely would not have used a focus group of people with a disability. But so what--how many people will react this way? Precious few. It was then I realized the larger aim was more important than my detailed critique. The report forwards a position few consider to be a civil rights issue: disability rights. In this sense the report is a grand success. I also like the multi media release. Yes, you can readily access a pdf of the report at disabilityrightswa.org but you can also access videos of Decker and a group of people with a disability responding to the Ashley Treatment.

What struck me after watching the above video and reading the report is the fundamental divide between those with and those without a disability. To me, disability rights is fundamentally a civil rights issue. This is as obvious to me as is the need to breath. Unfortunately the vast majority of people do not equate disability rights with civil rights. Disability for most people is a medial problem and the notion of disability rights as civil rights requires a theoretical leap they are unable or unwilling to accept. Such a leap in logic requires one to disregard all they have been explicitly taught and absorbed about disability. The inability or refusal to consider disability rights as akin to civil rights is an increasing danger to all people--not just those with a disability. As Decker provocatively begins the report, somewhere in America people are sitting down and considering withholding life sustaining medical treatment from a person who has a disability. And why do these conversations take place with stunning regularity? According to Decker they happen "because the persons being considered are viewed as having little value as they are. They are considered not as fully human, endowed with inalienable rights of liberty, privacy and the right to be left alone--solely because they were born with a disability".  These are not only harsh words but the harsh reality I have lived with for 34 years. I will have much more to say about the report once I thoroughly digest the ideas presented.

A Glimpse into the Future?

I have been reading British newspapers with great interest the last few weeks. I believe disability issues as they are being played out in the British press maybe a precursor to how disability will be discussed in the American presidential campaign this fall. The British Disability Living Allowance has risen sharply in recent years and is being subject to extreme budget cuts. All people on Disability Living Allowance will be reevaluated. It is expected that 500,00 people will lose their disability benefits. This is the work of Iain Duncan Smith who is seeking to slash the budget. In Smith's estimation fraud is rampant and among the primary reasons why the Disability Living Allowance has increased. He thinks that there is a significant problem with lifetime awards. "Something like 70% had lifetime awards which meant that once they got it you never looked at them again. They were just allowed to fester". Fester? Seriously, fester? In defending his reforms, Smith used the example of a person who had lost a limb or limbs. He believes that once provided an artificial limb there was no reason for such an individual to receive a Disability Living Allowance. Smith conveniently ignores the rampant unemployment among people with a disability. 

What Smith is trying to do is not original. Think back to the 1980s and Ronald Reagan's role in de-instituionalizing millions of people with mental illness. Reagan did not do this out of the goodness of his heart but rather to save money and close institutions. In a British twist to an old story Smith is trying to cull the ranks of people eligible for the Disability Living Allowance. Like Reagan, he is doing this to slash the budget. Do not be fooled. A Girl with the Cane, a wonderful Canadian blog, points out Smith's efforts to mislead the public.  Fraud accounts for 0.5 of Disability Living Allowance but 30% of claimants will have their supports cut or eliminated. She posits is this not just a tad bit excessive? 

What is left unsaid is the belief people with a disability who receive Disability Living Allowances are sponging off the public. They are charity cases whose demands are excessive. They are, to use Smith's own words, a "festering "problem". The press wants to know who is to blame? First, and foremost cheaters. Those individuals who are not really disabled and take money away from those with a real disability. In the estimation of Christina Odone in the Telegraph, "Iain Duncan Smith Must Not Give in to the Disability Bullies" writes: "The system allows alcoholics and drug addicts take away from more than someone who's blind: it allows anyone to fake a back ache and stay off work, earning money as they do so". This too is an old story. Pit people with a disability against one another. Establish certain disabilities as inherently in need of charity while others are dubious at best. Blindness, deafness, paralysis, these are socially acceptable. Mental illness? This is inherently bad. Obesity? Sorry this too is bad. Not content to merely divide, Odone goes on to blast the people with a disability that are willing to defend themselves. She wrote Smith:        

is taking on a powerful and often extremist lobby. He got a taste of the uproar to come a year ago last Saturday, when hundreds of disabled marched and rode in wheelchairs in protest in central London. Organised by the UK Disabled People's Council and the Disability Benefits Consortium, the "Hardest Hit" protest marked the first anniversary of the Coalition government. Some threw fake blood on the pavement, others wore gloves to show, as they told the BBC that the government cuts had cut off their hands. Hard-hitting stuff – and more is sure to follow with IDS's defiant stand in today's Telegraph: he will not be derailed from reforming the disability benefit system. The system clearly needs radical changes...Yes, there are many who are truly disabled; but some are milking the system. Even the BBC, in a memorable Panorama, began to investigate "Britain on the Fiddle", finding that benefits claimants were sailing yachts and driving Bentleys.

Please show me the people with a disability that are sailing yachts and driving Bentleys. The disability activists I know are living on shoe string budgets, barely able to survive. And what happens in this country when they fight back? Well, if you are a member of ADAPT and you take an action like they did last month in Washington DC. 76 people get arrested including a woman, Martina Robinson, I once taught at Purchase College. She is a member of ADAPT and lives in Massachusetts. As of today, she is being required to appear in court. It will cost her $367 to get to Washington DC by train. A night in a Washington DC hotel that is accessible will cost about $200. Robinson may be forced to spend $567 to defend herself. Like other members of ADAPT she cannot spare that money she uses for luxuries like rent and food. I call this economic abuse and intimidation. But in Odone's estimation Robinson is a disability bully. I suggest Odone spend time with Robinson, a member of ADAPT for 16 years. Robinson is not driving a Bentley or sailing in a yacht. Instead, she is fighting the good fight. She is fighting for herself but more than that she is fighting for those who cannot escape a nursing home and live in the community.         

Taxis New York City Style

I hope Mayor Bloomberg sees this video. This is an accurate assessment of the taxi situation in New York City. A person that uses a manual wheelchair has a chance to hail and enter a cab in the city. It is not easy but possible. A person that uses a power wheelchair is screwed as this video shows. I rarely take cabs in NYC. When I do I have a friend hail the cab--a friend that is bipedal and well dressed. I hide between two parked cars. When I emerge from between the parked cars my friend opens the rear door and then moves to stand in front of the cab so he cannot drive off. The result is I am able to ride in a taxi with a driver that will either be silent the enter time or will berate me the entire drive. Yes, this happens. This is why I use the MTA bus service which is reliable, though slow, and the majority of drivers polite and actually know how to use the lift. Still you would think I should be able to hail a cab like I do in many other cities across the country. Mayor Bloomberg should be ashamed--ashamed he is knowingly violating the law. If the Taxi of Tomorrow that he is backing with all the power he can muster is put in use I know I will not be able to use a NYC taxi for the next decade or more.