Bloomberg Rails Against Accessible Taxis

I have never been impressed with Mayor Bloomberg. But in the past week I have gone from unimpressed to deeply annoyed if not angry. It is clear to me that Bloomberg is desperate to keep the inaccessible taxi of tomorrow as the NYC taxi fleet. If he is successful I will be unable to hail a cab in NYC for the next 10-15 years. Bloomberg words, his anti disability rhetoric, is so far off base now it is hard to fathom. Someone needs to tell the man the ADA in this case is clear cut--transportation must be accessible to people with disabilities. The Feds made that clear but Bloomberg failed to take note Bloomberg I suspect may be trying to play good cop bad cop with David Yassky chairman of the NYC TLC. This week Yassky wrote that he does not think the TLC is violating the ADA in spite of the fact less than 2% of taxis are accessible. He did however acknowledge city officials "cannot ignore the possibility that a court order will at some point require a significant portion of the taxi fleet to convert to accessible vehicles". In stark contrast Bloomberg has waged a media campaign against accessible taxis. His words and actions are objectionable and insulting. He makes it sound as though if taxis are required to be accessible the entire NYC taxi system will collapse.

So what has Bloomberg said this week? Among the low lights:

The dispatch system will work. He expects people with a disability to call the TLC who will dispatch one of the 231 accessible cabs in the city. Bloomberg thinks 231 accessible cabs is adequate and that a dispatched cab will arrive promptly. Give me a break. This might work in the middle of the day in August when the city is empty but I would not expect a cab to arrive promptly if at all on an ordinary day. Forget trying to get a dispatched cab during rush hour, at the end of an event, or on a busy weekend.

The suspension system on the accessible cabs is inferior and dangerous. Accidents to non disabled people are inevitable and the city will be deluged with law suits. According to Bloomberg "The suspension is a lot worse and its harder to get up and pay the cab driver and get in and out and that sort of thing". When I read this I almost laughed. The issue of safety was used for decades to bar people with a disability from schools, buses, planes, trains, concerts etc. This new twist is preposterous. The ADA is clear--public transportation must be accessible

New York City is unlike any other city in the country. Bloomberg said "it just doesn't work in a city like ours, and I don't know that the U.S. Attorney General understands how people live in the city and the traffic patterns and that sort of thing". Traffic patterns? I think a grid system is pretty basic. And how I wonder is it that other cities with far more complex traffic patterns have accessible cabs and cabbies that actually stop for people with a disability. London and Dublin are two such cities.

The passenger in accessible cabs sits far away from the driver. Tips will be radically smaller because of the distance. According to Bloomberg "When the cabs are big enough for a wheelchair a lot of cabdrivers say that the passengers sit farther away and they can't establish a dialogue and they get lower tips". The distance is also a grave danger as well. Bloomberg maintains "You know, there's so much more pace between the backseat and the divider, you're going to have people getting hurt". A dialogue with a NYC cab driver? Who is Bloomberg trying to kid? As for the size, Bloomberg makes it sound as though the accessible cab is the size of a tractor trailer. Preposterous.

I saved the best comment for last. Bloomberg: "You can't take a wheelchair out into the street and try and hail a cab". What? Exactly where does Bloomberg expect the human beings sitting in a wheelchair to hail a cab? I am sure he ever seen a person navigate the streets of New York City using a wheelchair. I am in the street all the time. When I park my car mid block and walk to a muni-meter, fail at hailing a cab, go an entire block in the street because a curb cut is blocked or not present, avoiding construction etc.

I hope Bloomberg is desperate. If history is any indication, he sounds like former Mayor Koch. The closer the city came to being forced to make the buses accessible the more obnoxious Koch became. And Koch was the typical New Yorker--sharp witted, opinionated, and wrong. Koch's anti disability rhetoric was at least creative in retrospect. Bloomberg;s anti disability rhetoric lacks any creativity, substance and relies on antiquated bigotry. Bloomberg is very much out of touch with disability rights. Indeed, I doubt the man even knows what the term means. I suspect our billionaire mayor's mind set is stuck in a charity model of disability where laws like the ADA can be easily ignored. I sure hop the Feds will remind him that people like me have civil rights.

NYC Taxis, the Mayor and the U.S. Attorney

Sunday October 16 the New York Daily News published an editorial that took me aback--"Mayor Bloomberg Must Make the City's Taxis 100% Wheelchair Accessible". A few days earlier the Manhattan U.S. Attorney, Preet Bharara filed court papers that the government agrees with disabled activists who have sued the Taxi and Limousine Commission. In no uncertain and in unusually blunt terms Bharara wrote the TLC cannot continue to violate the ADA. The U.S. Attorney's remarks are out of the norm and are without question the strongest criticism of the mayor and the TLC to date. At present, the city does not require taxis to be accessible. The NY Daily News noted that "there are 13,237 yellow taxis; 231 can accommodate a wheelchair. That's 1.7%, making the chance of hailing one almost impossible. That tiny proportion clashes with the ADA's requirement of equality of access and cannot be remedied by a sketchy plan for a system of telephone-dispatched wheelchair-accessible cabs. What's more, federal standards mandate that vans must be accessible when they are employed as cabs.
Bharara got to the point, stating, "a ruling by this court now that the city is obligated to ensure that all new taxicabs are wheelchair-accessible is all the more important because it will likely have a significant impact on both the city's implementation of an accessible taxicab dispatch system and its selection of the vehicle that will become the 'Taxi of Tomorrow.'"

The TLC concept of a dispatch system will not only fail miserably (which it did under a test run last summer) it is an obvious attempt to avoid complying with the ADA. Based on the U.S. Attorney's words it seems that the mayor and TLC have no choice but to accept the fact they cannot continue to break the law. The so called taxi of tomorrow must be accessible. This losing fight on the part of the city fight reminds me of the late 1970s when Mayor Koch was violently opposed to making city buses accessible. I vividly recall Koch loudly telling reporters it would be cheaper to rent a limo for every person with a disability than putting lifts on NYC buses. Koch was not only wrong but spectacularly wrong. NYC buses are not only accessible but are used by thousands of disabled people every day. I have no doubt Mayor Bloomberg is as impressively wrong as Koch was.

Bloomberg will no doubt try and fight the U.S. Attorney. His administration has been hostile to disability rights for quite some time (see my post about hurricane shelters and lack of accessible locations to vote). I am hopeful this is a fight Bloomberg and the TLC will lose. Even with a victory change will be slow to come. Hailing a cab for a person such as myself that uses a wheelchair is an exercise in futility. I tease my friends an armed bank robber being chased by the police has a better chance of haling a cab in New York City than I do. But do not take my word for it. In a letter to the editor published by New Mobility, a yuppie magazine for people with a disability, Ellen Stohl, a visitor to the city wrote: "I just returned from a trip to New York City. Cabs do not stop for people in chairs. Outside the Empire State Building, my family and I tried to hail a cab. My husband kept flagging them down, but they would pull in and then pull right back out when they saw the chair." This is an every day event for anyone in NYC that uses a wheelchair and is naive enough to try and hail a cab. But Stohl is a smart woman. She learned the NYC way to hail a cab. She wrote "I finally had to hide behind a big flower pot while my husband and a ticket salesperson waived down a cab. We got my mother-in-law and daughter into the cab before I came out of hiding so the cabbie could not leave". And that my friends is about the only way a person that uses a wheelchair in NYC can get a cabbie to stop. It is grossly wrong and the norm. If the Mayor and TLC have their way nothing will change for decades. If they lose, I hope NYC cabbies of the future may actually change--there would at least be hope someday I can hail a cab like other New Yorkers.

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.

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. 

Disasters and Disability

Earlier this month I wrote about the dreadful response of New York City's emergency preparedness program as it pertained to people with disabilities. In spite of ten years of planning and countless meetings the city was not prepared to meet the needs of people with disabilities. Emergency shelters were not accessible. School buses used to evacuate people had no lifts. Emergency announcements did not provide American Sign Language interpreters. Maps of shelter routes could not be used by people with low vision. More than one person that used a wheelchair was turned away from an emergency shelter. These are the mere highlights of the city's epic failure.

It seems quite evident to me that Mayor Bloomberg's administration has utterly failed to meet much less respect the rights of people with disabilities. Perhaps Bloomberg's indignant reaction in 2009 to Michael A Harris, a disability rights advocate whose tape recorder inadvertently went off at a press conference was a sign of trouble to come. Callous in the extreme, Bloomberg has given an encore performance. At a press conference after Hurricane Irene Bloomberg seemed to suggest that people with disabilities should rely on taxi cabs rather evacuation buses that were not accessible. Good luck with that one! Less than 2% of city taxis are accessible. And need I mention the so called taxi of tomorrow will not be accessible either. Catching an accessible cab even on the best of days is not easy.

Given the above I was heartened to read the Brooklyn Center for Independence of the Disabled and the Center for Independence of the Disabled, New York are suing the city in Federal District Court. The suit alleges that Bloomberg and the City of New York discriminate against men, women, and children with disabilities by failing to include their needs in emergency planning. To me this is self evident. New York is a hard place to live--I accept this as a matter of fact. However, I do not accept the Bloomberg administration making things harder for people with disabilities. What I see is a pattern of discrimination that has percolated throughout the tenure of the Bloomberg administration. I get a sense from reading the statements of disability rights advocates that the Bloomberg administrations listens to what they have to say and then completely disregards the rights of people with a disability. I also get a sense the failure of the city emergency preparedness program to meet the needs of people with a disability was the last straw. People, disabled people, could have died. Our risk is disproportionately and needlessly high. Hence I cannot help but conclude that Susan Dooha, Executive Director of CIDNY was correct when she observed "The aftermath of Hurricane Irene reveals a blatant disregard for the lives of persons with disabilities and clearly shows that our efforts over the past 10 years to inform the city of its shortcomings in emergency planning were largely ignored". I am not sure what it will take for the Bloomberg administration to change. Does someone need to die before the city acts?

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.       

Chen Guangcheng: Bad Ass

Last week my son sent me an article from the Huffington Post about Chen Guangcheng. He was following the news about Chen Guangcheng, the Chinese activist, who he described as a being a "bad ass of epic proportions". Why was Chen Guangcheng a "bad ass of epic proportion"? In my son's estimation he was a real life Rutger Hauer as in the Grade B 1980s movie Blind Fury. I am not a fan of this movie. We watched it together a long time ago. After the film I explained to my son why I had serious reservations about the content. I explained it was based on a faulty premise and followed a well worn super cripple belief used throughout film history. My son listened politely and said "Dad, its just a cool movie, you know the suspension of willing disbelief and all that stuff". 

I was reminded of this exchange because in the last week dozens of stories about Chen Guangcheng have appeared in nearly every news media outlet. As I hoped, Stephen Kuusisto has chimed in at Planet of the Blind and is quoted in a very good article by Alan Greenblatt. Greenblatt notes that central to all stories about Guangcheng is the fact he is blind. He wonders if Chen Guangcheng is in the news because of his activism or because he is blind. This is a damn good question. Kuusisto is quoted as stating "His blindness did not give him any particular bravery or insight. It is just a factor in a much larger life". I completely agree with this statement. Predictably tabloids have had a field day as they are prone to when it comes to any sort of disability.  I perceive no change in the way Chen Guangchang is described--there is always a reference to the fact he is blind. Kuusisto is quoted as noting "Blindness stands as a kind of metaphorical intensifier. The cleric [Omar Abdel Rashman the so called blind sheik] is angrier than other people because he is blind. In that way Chen is more miraculous and heroic because he is blind". This is in part exactly why my son was so enamored with the movie Blind Fury. Rutger Hauer was not an ordinary bad ass. He was an epic bad ass because he was blind. Chen Guangcheng is no ordinary activist, he is as Kuusisto observes a miraculous and heroic activist.

When people I know, and the many I do not know, note my assessment of how far people with a disability have come in terms of disability rights is inherently negative stories such as Chen Guangchang come to mind. Have we made any progress since the 1980s--progress here in a cultural not legal sense? Legally yes culturally no. Many laws exist that are designed to protect my civil rights. On bad days I think there these laws are useless because there is no social mandate to enforce them. I am distressed by people in positions of power who hold an antiquated view of disability. Here Mayor Bloomberg comes to mind and his all out effort to have the so called Taxi of Tomorrow approved in spite of the fact it is not accessible. Bloomberg is simply one of many that think providing basic and what are known as "reasonable accommodations" is a matter of choice not law. And this is the real problem, American culture--something Robert Murphy noted when he wrote the Body Silent. In short, progress is taking place but at a glacial pace.


    

Misplaced Outrage

I mocked the controversy created by the New York Post story about Disney Land. In case you missed it Wednesday Martin has alleged that wealthy Manhattan parents have hired people with a disability with the express purpose of eliminating waiting on line. The fact this story has prompted an extended amount of coverage bothers me. First, we are talking about the NY Post, a tabloid owned by Ruppert Murdock. Not exactly a paragon of journalism. But let's put this aside. Who is outraged? In my estimation people that know nothing about disability. The headlines are about what I expected:

Disney World Scam: Wealthy Moms Rent Disabled Guides to Skip Lines (and Shame Humankind)

How I scammed the Disney World Wheelchair Line System

Disney Probes Sleazy Riders

Disney World Scheme: Entitled Families Hire Disabled Guide to Bypass Lines, Says Report

Yeah No: Rich Manhattan Moms Allegedly Renting Disabled People to Skip Lines at Disney World

I thought this story would have a short shelf life. Now I am not so sure. CNN picked up the story and as expected all Florida based news outlets are discussing it. The fact is this is not news at all. People have been using this scam at Disneyand elsewhere for a long time. Thus this is a new twist on an old story with the perfect villain: uber wealthy Manhattanites. Damn those 1% parents and their children too!

When I read stories about disability scams I shrug. The outrage expressed puzzles me. I have had my civil rights violated in a myriad of ways. For instance, I have been refused entry to restaurants in New York City; no wheelchairs I am told. I have had many a taxi pass me by to pick up a bipedal customer. I have had bus drivers lie to me and say the lift is not working or that they do not know how to use it.  I have had rental companies assure me a car with hand controls is available only to find out the car is "lost" in transit. When such incidents take place non disabled people look away. I cannot recall anyone ever coming to my defense when I suffered gross inequities at let's say an airport. I cannot recall a single person that expressed outrage when I was being denigrated by someone who clearly held power. Hence, I shrug about Disney and the angst expressed. It is misplaced emotion. I wonder where are these people when the school board decides not to put a lift on a bus? Where are these people when the special education budget is cut? Where are these people when Mayor Bloomberg selected an inaccessible taxi of tomorrow? Where are these people when technology for people with a vision impairment is deemed too costly? Where are these people when a new facility is constructed but does not meet ADA requirements? Where are these people? Nowhere to be found and silent. This is bad, a terrible social dynamic. What people say and what people actually do is radically different. This is a giant social problem. Who is too blame? Me and everyone reading these words. This social failure reminds me of the classic film Cool Hand Luke. The brutal guard looks at Luke behind aviator sun glasses, hat pulled down low and states: "What we have here is a failure to communicate".

In addition to a stunning level of ignorance about disability in general, I have an additional concern. As noted in my previous post about the Disney is the emergence of able bodied outrage. Here I refer to a multitude of stories that question what I would classify as a reasonable accommodation for people with a disability. The most well known story about what a treat it is to have a disability pertains to airport security lines. More often than not, people with a disability do not wait on line. We are shuttled off to a different and shorter line. This is a reasonable accommodation and mitigates a multitude of different disabilities. People see this and think oh man you are so lucky. Well I do not feel lucky when I am the very first person on the plane and the very last person off the plane. I do not feel lucky when my wheelchair comes back from the belly of the plane and is damaged. I do not feel lucky when a supposedly trained person asks me to "walk just a little bit". This too is a reasonable accommodation one I find decidedly unreasonable

At issue for me is how do we raise the level of understanding. How do we get all people to think disability rights and civil rights are one in the same? Disability studies has been ineffectual. The disability rights movement has stagnated in recent years. ADAPT demonstrations are utterly ignored by the press. So how do we educate and make the bipedal masses see disability for what it really is? I have no clue. And that is problem number one.

Mass Transportation NYC Style

I love to travel despite the fact I routinely encounter trouble accessing mass transportation systems. As I have detailed in many posts the airline industry is inherently hostile to any person with a disability. Trains are hit and miss at best. Buses are the most reliable form of mass transportation in my experience. Access issues vary widely from one city to another. San Francisco, Portland, and Seattle are relatively easy to navigate. At the opposite end of the spectrum is New York City. Aside from MTA buses the train and subway are difficult and time consuming to use. Forget about taxis. Mayor Bloomberg has made it crystal clear the city has no interest in making taxis accessible. While MTA buses are reliable they are slow. The most efficient way to get around New York City is the subway system. Good luck with that! I try to use the subway at least a few times a year. Rarely have I been successful. Few stops are accessible and even if an elevator is present at a renovated stop they are usually not operational.

None of the above is news to a person that uses a wheelchair in NYC.  I mention because the New York Times published a good article and video about navigating the city. See http://www.nytimes.com/2013/01/17/opinion/the-long-wait.html Jason Dasilva breaks no new ground here. Two decades after the ADA was passed accessing mass transportation in the city is a challenge. Dasilva, an independent film maker, lives in Williamsburg Brooklyn. In a short Op-ed film Dasilva leaves his home for the Union Square area in Manhattan, a typical trip for a resident. Dasilva's journey though is not simple or efficient. It takes him nearly 90 minutes to make a one way trip. Dasilva's friend made the same journey in less than 15 minutes.

It is films like Dasilva's and my own experience navigating mass transportation systems nationwide that make me aware of the fact I am disabled. It is not my disability that is the problem but the refusal of mass transportation systems to accommodate a wide range of disabling conditions. At no point in my life am I as aware of social barriers than when I access mass transportation. Elevators are routinely broken or simply non operational for unknown reasons. Employees are often rude and dismissive. Virtually no one has a clue about how to navigate a terminal or can locate accessible routes. Even when present accessible routes are convoluted. Curb cuts in one place handicapped parking in another. The net result of decades of hassles is that I am convinced we as a culture do not value access. I have felt and continue to feel as though I am on my own. My fellow passengers are never supportive. Employees  of mass transportation systems are not pleasant. Nasty employees are hardly uncommon. Ignorance abounds.  This is not just a "long wait" as the NY Times article is entitled. The issue is needless barriers are created and supported by a social system that does not value my presence.

Holiday Cheer? Bahumbug

The Holiday season puts me on edge. Many people act out of character during the season of good cheer. I try to limit my social interactions and avoid any mall like the plague. One thing I cannot avoid is the Salvation Army. The fact is I hate the Salvation Army and the people that ring bells outside grocery stores all December.  Every time I hear those bells I get annoyed and it instantly puts me in a bad mood.  The bells remind this is a bad time of year to be a person with a disability. Charities are out in force and by extension people seem to have an inner urge to help the handicapped. Where I wonder are all these do gooders in the spring, summer and fall? Where are these do gooders when the school budget is cut and the first line items eliminated are for so called special education? Where were the do gooders in the Senate when the UN treaty on disability rights I wrote about was not ratified?  Where were these do gooders when Mayor Bloomberg selected the taxi of tomorrow that is not accessible? Where were these do gooders when I encounter yet another broken elevator or bus lift?

Spare me pity and a charity model of disability.  Charity at the macro level is a form of social repression. The charity model awards power to the giver and suppresses the recipient. If we think of people with a disability as needy this undermines the civil rights model of disability. This is exactly what I was thinking when I was grocery shopping. Yesterday I stopped by the supermarket and as I was roaming the aisles I heard an announcement over the public address system: “A car with plate number XYZ is blocking the handicapped ramp. The car must be moved immediately. The police have been called”.  I would suggest that sort of announcement will only occur in December on the days leading up to Christmas. Ramps are blocked on a regular basis at the supermarket and elsewhere.  Shopping carts often occupy handicapped parking.  This issue is never addressed much less resolved. The sort of sudden interest based on a feeling of doing good for the handicapped is a one shot deal and categorically fails to address the fundamental problem that is ignored by the majority of Americans: disability rights are civil rights.  This depressing assessment reminds me of the slogan piss on pity.  Perhaps I should dig out my t-shirt  with these words and wear it as a shield from do gooders. 

Republicans Emotional Use of Disability

http://youtu.be/y_O_6ycisIE

In the last presidential election when Sarah Palin used her son Trig to establish herself as an expert on disability rights I was appalled. Over the last two months a few people have sent me emails about Rick Santorum, a deeply religious right wing Republican. Why, people have asked, am I not blasting him? He is after all following Palin's disability handbook. That is Santorum is using his daughter who has Trisomy 18 as a emotional prop to appeal to right to lifers, those opposed to health care reform, and so called traditional values Republicans love to talk about. I simply do not take Santorum seriously but when someone sent me the link to the ad on You Tube above I had to write something. Watch this long political ad without either getting angry or sick and you have a stronger stomach than I do.

Based on the reviews posted on You Tube this ad is exceptionally successful. People love it! Sadly this does not surprise me one bit. Emotional arguments devoid of any factual basis about disability always touch the hearts of people who know nothing about disability. And the skeptic in me would estimate that means 90% of the country will fall for the rhetoric in the political ad. This makes me crazy as a quick google search, "disability rights" will reveal a wealth of information. This information will undermine the emotional response the Santorum ad was designed to prompt. Facts people. Facts and politics. Here is a fact Santorum does not want you to think about nor do any other republicans--disability is a valid political issue. Disability has a central place when it comes to health reform, aging baby boomers, and laws such as the ADA that was gutted by conservative justices put in place by former President Bush.

Forget the sentiment, ignore the tear jerking. Lines such as "Some people describe people like Bella as ‘disabled children, I look at her and I look at the joy, the simplicity, the love she emits, and it’s clear to that we are the disabled ones, not her.” People with a disability do not need pretty words and sentiment. People with a disability need equal rights. People with a disability need equal access to education. We need politicians to support IDEA so children like Santorum's daughter will get a good education. But Santorum plans on cutting spending on education. Do I really need to tell readers exactly who will be hurt the most? Santorum is also against the Affordable Care Act. He even goes as far as to suggest people with a disability will suffer and die if it is enacted. He conveniently leaves out the fact the vast majority of disability rights groups support the ACA. The fact is health care reform will help people with disabilities. Perhaps as a Senator he is unaware that access to insurance for people with a disability is difficult at best and financial ruin common. And lest readers think I am simply spewing out anti Republican rhetoric, I am not. I have no problem with conservative politicians. I do however have a huge issue with the way conservative Republicans skew facts and question their ethics since 9/11. We thus have people like Michelle Bachman who thinks water boarding led to the discovery of real facts. So what if it did? The American government is not supposed to sanction much less torture any human being. We are not supposed to detain people without cause or legal representation but we do. We are supposed to be allowed to dissent and have freedom of speech. But when that dissent becomes inconvenient we send in the police. Here I am referring to Mayor Bloomberg who sanctioned the police raid on Occupy Wall Street. That raid took place at 1AM, the media was barred from the area, the park was declared a no fly zone and no one really knows what the police did evicting protesters. Does this sound like democracy? Not to me as I find dissent our patriotic duty.

Let me reiterate. The above is not a rant specifically against the Republican Party or Santorum. He is just the latest conservative politician to use his child with a disability as a political prop. Some of these thoughts were prompted by Steven Kuusisto with whom I will end this post. He wrote: "The more I think about the GOP the more I wonder if ever again the best in our nature will clarify for truly decent conservative people. I happen to know many such folks. That well meaning principles have been sacrificed at the alter of theocratic extremism is terrible news for our republic. This is still a nation of good people. We deserve a good Republican party. Plenty will say I'm sniffing airplane glue." I don't think Kuusisto is sniffing glue. I am surrounded by such conservatives where I live in the wealthy suburbs of New York City. Good people largely even if I do not like their politics.

More on Dr. Oz and Assisted Suicide

Stephen Drake at Not Dead Yet has put up another post about the Dr. Oz show. He refers to me and provides a link to my post about the Dr. Oz show. For this I am very grateful. It is very important that people read what Stephen has to say. He has been on the front lines so to speak for quite some time and Not Dead Yet is needed now more than ever. The Dr. Oz show highlighted this in spectacular fashion. Drake and Diane Coleman are forward thinkers whose voice needs to be heard. For instance, Drake anticipated the Dr. Oz show was going to be hopelessly biased in favor of assisted suicide. This has not been a good week or two for disability rights. We have the Dr. Oz show pushing assisted suicide and Mayor Bloomberg spouting off about the "dangers" of having accessible NYC taxis.

In an effort to reaffirm the rights of people with a disability and for the skeptics out there who may think I was exaggerating what I wrote about the Dr. Oz show, below is part of what Drake posted at Not Dead Yet. I had not met Danny Robert and Nadina LaSpina before last week and was duly impressed. I think their take reinforces what I wrote and exactly why Not Dead Yet is needed. I urge all to read the final paragraph very closely.


Bushwhacked in the Land of Oz

Danny Robert & Nadina LaSpina

Wednesday was a dark and rainy windy day here in the Big Apple. We were invited to be part of a taping for the Dr. Oz Show on the topic of assisted suicide. Our car service pick up was scheduled for 7:15 AM. We couldn't find the van which was parked far from our door and got soaked but we got to the accessible entrance to 30 Rock before 8:00.

Julie Maury, Bill Peace, Hope Derogatis and Ari Ne'eman, all people with disabilities and disability rights advocates, were already there. We had each been interviewed by producers prior to being invited to appear on the show. We were directed to a large elevator to the sixth floor where we all showed our IDs and were given our tickets. We were received very cordially, with big bright smiles, by the production staff who all looked like high school cheerleaders. “Are you excited to be on the show?” one of them asked. “As much as I am when I go to the dentist,” Nadina answered.


Though we had never seen the Dr. Oz show, we expected it to be low quality, shallow and (especially having read Steve's blog) extremely biased. But we had no idea of how great the bias and how blatant the hostility that awaited us in Oz's studio would be.

We were brought back to the elevator and then escorted into a small “holding room." With some difficulty, we all squeezed in. Dr. Byock, a palliative care doctor who opposes assisted suicide, stopped in to introduce himself and we all pleasantly shook hands. He was scheduled to be on the small expert panel, and we were scheduled to be in the pro-or-con segment of the audience.

We talked among ourselves, deciding who would make which point. Very naively, we thought we would all get a chance to speak. Then a young man, accompanied by someone with a video camera, entered and introduced himself as Greg. He said he was a producer and asked us to articulate our opposition to physician assisted suicide. Each of us had something to say and he listened and asked questions. He explained that in the first segment of the show, Dr.Oz would bring out his special guest, Montel Williams, who would explain why he is in favor of assisted suicide, then Dr. Ablow would argue against, and then a woman with ALS would be brought out. Greg asked that we not interrupt or heckle, and that we would get a chance to speak after the woman with ALS.

Montel gave a dramatic performance, grabbing his legs from time to time while he spoke, his face contorted in pain. He said he wants to have a way out when the pain gets unbearable and he wants to die with dignity. Dr. Ablow gave some good arguments, saying "I would never legally allow physicians to decide who should live and who should die... physician assisted suicide is a slippery slope..." But right from the start it was very obvious that Dr. Oz and most of his audience were not interested in hearing any arguments against.

Then Dr. Oz introduced Dana, an African American woman in her late 40s or early 50s with ALS. Her attendant rolled her to a spot right in front of the panel. She sat in a manual chair, somewhat reclined, wearing a ventilator mask. A video played on the big screens, showing Dana before tragedy hit, healthy, strong, athletic... (very exploitative). Then the ventilator mask came off (the ventilator alarmed briefly) and Dana began to speak. She said she had been living with the progression of ALS for 8 years and she was tired. She hated having to depend on others for her care and she couldn't take it anymore. She said she was depressed, lonely, had no friends left and she wanted to die. Nadina and I looked at each other and said “that's why she wants to die.” Nadina quickly jotted a note in preparation for her comments.

As Dana spoke, the sighs and the sniffles from the audience kept getting louder. The cheerleaders went around with boxes of tissues, the bright smiles on their young faces now replaced by mournful expressions.

Dr. Oz asked Dana's son how it felt to live with his mom. He said it was sad and that, though he didn't really want her to die, he also didn't want her to suffer anymore. Dana's daughter said: "It's heart-breaking, unbearable to watch her suffer. She's had enough." Dana's sister, who has her health care proxy, reiterated: "She can't take it anymore. She's suffered enough." It was obvious to us (but I guess to no one else) that the family had “had enough.”

Greg had promised that after the break, we would have a chance to speak. After we heard Dana, we decided that I should go first, since my physical condition is, outwardly, very similar to hers, and my need for a ventilator is actually greater than hers. So I told my story, including my MS diagnoses, the break up of my marriage, how bleak the future appeared to me then, and the resulting near-suicidal depression. I said how glad I was that no lethal prescription was available for me then. I said that meeting disabled people and becoming part of an activist community got me out of the depression. That I fell in love with Nadina 18 years ago and, in spite of my losing function and at times becoming depressed, I lead a full, rich and very happy life.

Nadina picked up here and said that losing function often is accompanied by temporary depression, and that having available a lethal prescription would be very dangerous for someone with a progressive disability. Then she started saying that assisted suicide was usually presented as a “choice for the terminally ill,” but here we were talking about people (Montel, Dana) who were not terminally ill but had disabilities. Dr. Oz didn't let her continue. He quickly walked away with the mike, while Nadina yelled “I'm not finished.”

During the break, Nadina complained to Dr. Oz that she had not been allowed to speak. "I'll come back to you," he said. But he never did.

In the next segment Dr. Oz brought on two more panel guests, Dr. Ira Byock and Barbara Coombs Lee from Compassion and Choices. Dr. Byock was very good, stating there was no need for assisted suicide given the availability of good palliative care. He pointed out to Dana that she could refuse treatment. He did so in a very gentle way. He asked her: “do you want to tell your doctors, maybe next time you're hospitalized with pneumonia, that you'd rather not have them do anything, let nature take its course?” (Maybe not his exact words, but something like that). Dana did not answer. Dr. Oz quickly stepped in. “Let her answer” Nadina yelled out, “she doesn't want to die.” But Dr. Oz had quickly changed the subject.

Montel kept repeating he wanted to maintain his dignity. A few times we yelled out “What do you mean by dignity?” and “Do you think we have no dignity?”

Barbara Coombs Lee didn't say much. She didn't need to. By the time she came on, the argument in favor of assisted suicide had been completed (if there ever was an “argument” – from the beginning it was clear which side Dr. Oz was on and that the show had been scripted). Dr. Ablow was booed a few times. Dr. Byock was booed when he said, "We're not talking about choice but about control. You want to make sure you die with your boots on and make up."

Every time a new segment started, Dr. Oz would say things like: “The question today is: do we have the right to end our own life if we're suffering?” or “if our quality of life has deteriorated?” On the big screens the question was: “Do you think you have the right to end your own life?” (just as sloppy and as the show’s online survey, conflating suicide with assisted suicide, conflating the right to refuse treatment with assisted suicide).

The final segment was supposed to be questions and comments from the audience. We were divided by an aisle into pro and con. During the break, Nadina managed to get the attention of the producer, Greg, who interviewed us before the show. “Dr. Oz didn't let me speak,” she told him. “NDYers have a unique perspective. We want to be heard.” He answered: “I'm sorry.”

Dr. Oz let a right-to-lifer speak briefly. He called me (Danny) a hero. And Montel replied: “let's not pit patient against patient.” Julie yelled out: “We're people not patients”, but without the microphone, none of us could be heard. A hospice nurse spoke against assisted suicide, mentioning how a woman's life was prolonged long enough for her to hold her grandchild in her arms. But most of the comments were from the other side of the room. Horror stories about people made to suffer, told by someone other than the person, and you couldn’t tell the real cause of the suffering.

Nadina, Julie, Bill, Hope and Ari kept raising their hands but Dr. Oz totally ignored us. One guy said: "These Not Dead Yet members are selfish. They don't care about people suffering. They don't want anyone to have choice.” We yelled out “It's the other way around.”

Dr. Oz kept ignoring us. But at one point, he was right next to Ari and Ari had his hand raised right in front of Dr. Oz's face. Dr. Oz asked him: "Are you right to life?" Ari answered: "No, I'm with the National Council on Disability.” Dr. Oz let him speak and Ari was great. He gave some statistics about Oregon, and even mentioned the Latimer case, the Canadian farmer who got a lot of support from the assisted suicide movement when he was prosecuted for murdering his 12-year-old daughter with cerebral palsy.


We tried after the show to reach out to Dana. Julie tried to catch up with her and her family, but was pushed away by Dr. Oz's production assistants. All of us NDYers were extremely frustrated and agitated. We all agreed we had been setup and just used as window dressing.

That audience was a microcosm of our society. Most every one in that audience was convinced that disability is a fate worse than death. Most of those in favor of assisted suicide thought we were selfish for wanting to live no matter what. Others, like the right-to-lifers, sitting along side us, saw us as heroic and saintly for putting up with what they imagined was great suffering and not succumbing to sinful thoughts of suicide. Sitting in that studio, we saw more clearly than ever how very important Not Dead Yet's work is and how extremely difficult.

I am Not Alone: Bad Cripples Abound!

I have written about the dichotomy between being a good cripple and bad cripple. Briefly, a good cripple is always cheery. A good cripple never gets mad and is always appreciative. A good cripple loves to educate the general public. A good cripple never questions why access is absent or inconvenient. A good cripple does not assert his or her rights. A good cripple is compliant and chipper. A good cripple is, well, sort of like my like my labrador Kate who oozes happiness. 

I am not a good cripple. I am bad, a bad cripple. I have a boat load of angry emails telling me exactly how bad and bitter I am.  I  also am subjected to nasty comments on a regular basis when I assert my civil rights.  You see I am not a doormat. I do not like it when people think I am physically and cognitively disabled. I can read a menu thank you very much. I can get in and out of my car all by myself. This is not "amazing" and I dislike being stared at when I doing I am in the process of transferring in and out of the car (kids who watch me get a free pass--they are just curious). I am insulted when a stranger accosts me and tells me "I would rather be dead than paralyzed". Gee thanks for sharing. I resent when I go out to eat that I am seated in the back at the worst possible table. I refer to this as the cripple table. I get angry when bus lifts and elevators are broken for weeks at a time. I have no hesitation asserting my rights when airline employees are determined are point blank rude.

I am not alone. We bad cripples are multiplying at an astonishing rate. Why we bad cripples even marry, divorce, and have children. And yes, I have brain washed my son into thinking I share the same civil rights as the bipedal hordes that populate the country. Don't call child protective services. It is too late he is an adult. Be forewarned there are others like me. Mike Ervin who writes at Smart Ass Cripple is one sarcastic son of a bitch who makes me laugh on a regular basis. And I discovered another bad cripple today. Good God it is an epidemic!  Lock up the children. Check in on Grandma and Grandpa. Lock down the schools. We are breeding! Sex? Oh no, you bad cripples are not just bad but sexual beings. Yuck, that's gross. For the record I have had sex once. I did so because I wanted a son. I promise I did not enjoy it. All sexual thoughts have been expunged from my mind. 

So who is this bad person I discovered? She is Andrea Chandler. A crippled Quaker. Try saying that fast ten times. She is married too. And she has pets! Wow, she is amazing! Pets, yikes she can do it all. Chandler wrote a gust post at Feminist Sonar hosted by Elas E. Sjunneson-Henry. And yes Sjunneson-Henry is bad too. She might even be badder than me! She is a disability studies scholar and activist and burlesque historian. Come on break out the strippers. And to think I thought my interest in body art and modification was different. Back to Chandler. She wrote a great post in April titled "The Dog & Cripple Show is NOT Open for Business". See http://feministsonar.com/2013/04/the-dog-cripple-show-is-not-open-for-business/ In part this is what Chandler wrote: 

Gentle readers, I was not a cheery and inspiring ray of sunshine before I became disabled. Why would I become one now? Not that I have any particular animus for the Good Cripples among us merely for being Good Cripples. You do you, brothers and sisters. What raises my blood pressure every time is when people try to lecture me (or another angry cripple) about why we, too, should be Good Cripples.
These evangelists never, ever suggest that maybe non-disabled people should get a fucking grip on their curiosity, exercise some self control, and not ask for in-depth details on how crippled bodies work. The evangelists never point out that any non-disabled human being over the age of 5 has learned that sometimes you don’t get your curiosity satisfied, you don’t get to touch something just because you want to, and that some questions are rude. No, these people just make constant demands for people with disabilities to turn themselves into traveling teachable moments, as if we have no right to boundaries, to privacy. As if we have no right to decide who can touch us when, or what information we want to share with total strangers.This is, not to put too fine a point on it, bullshit. When it’s another crip telling me to stop being a bad cripple, it’s depressing bullshit. There are millions of people with disabilities in the world, which means there are millions of ways of being disabled, all of them valid. What works for me, or for you, does not necessarily work for anyone else. Our bodies and lives are too different. If you want to be a Good Cripple, knock yourself out. We all have the right to decide when, where, and who we will educate, and how much information we will share while doing so. Being disabled does not magically negate my basic human right to decide these things. Being crippled does not put anyone under an obligation to lay themselves bare for the idle curiosity of strangers.

Asserting your right to boundaries, to be addressed politely, to not answer questions about your body, demanding that others treat you with basic respect for your humanity, none of these things makes you a bad person or a bad cripple. Being happy to stop and educate every single person who wants to quiz you doesn’t make you a bad person, either. But when you evangelize, when you lecture me and wag your finger about how awful I am that I just want to run my errands and get home without it becoming a two hour dog-and-cripple show, well. That, gentle readers, makes you an asshole.

I want to make it clear here and now I have never called anyone an asshole on this blog. I will confess the thought has crossed my mind more than once but I have refrained from putting this in writing.  These are heady days for me since I asserted that I am not a bitter man. Why some kind readers even felt compelled to tell me it is okay to be bitter. I cannot and will not embrace the mantle of bitterness. I am content to be angry. I am content to assert my civil rights even if most bipedal people have no clue civil rights and disability rights are one in the same. I am not bothered when I am angrily told I have a chip on my shoulder. I will confess though I do not like it when I am called a "fucking asshole". I guess not everyone loves me. This week it was amply demonstrated I am not alone. In the future hordes of bad and bitter cripples will create a social revolution. Ramps and accessible buses will abound. Every house from coast to coast will be modified. We will out law steps and require every American to learn and become fluent in ASL (American Sign Language). Obviously this makes bad bitter cripples communists--bi-lingual education is communistic; J. Edgar Hoover said so. We will also revolutionize health care and, gasp, endorse a nationalized health care system. This puts us on double super probation with the FBI. We will even require taxis to be accessible much to the horror of Mayor Bloomberg. We will advocate pot be made legal too in a nod to our hippie past. Why there is no end to the evil will create. You bipedal people have been warned!