American Airlines Attempts to Explain its Actions

American Airlines has provided a somewhat more detailed response as to why they barred a 16 year old boy with Down Syndrome and his family from flying. This explanation was posted on the Americans Airline Facebook page which was bombarded with expressions of outrage. 

Here is the statement in full:

We appreciate the outpouring of concern for the Vanderhorst family. However, prior to boarding flight 119 from Newark to Los Angeles, our customer service team observed the Vanderhorst teen yelling and running around the gate area – he seemed very agitated. Our team, along with the Captain of the flight, worked with the family for more than 30 minutes to try and calm the teen down. There were times when he was calm, but unfortunately, when it came time to board the flight he became agitated again. We tried to work with the family to come up with alternate solutions, which included an offer to rebook the family on the next flight in order to give the teen time to acclimate to his surroundings. Our customer service team, as well as flight crew, made the difficult decision that it wasn't best for the teen to travel at that time. We wanted to make sure that the young man, as well as the other passengers onboard, were safe and comfortable during the six-hour flight.Ultimately, the family chose to fly another airline, and we helped to re-accommodate the Vanderhorsts. American's actions and procedures are in full compliance with the Air Carrier Access Act. Asking the Vanderhorst family to take a different flight was a decision that was made with careful consideration and was based solely on the young man's behavior.

I remain convinced American Airlines is lying. The easiest way to settle this would be to release security tapes of Bede Vanderhorst "yelling and running around the gate area". Such behavior would have been grossly inappropriate. In fact if any person yelled and ran around a gate area at an airport in America the police would be called within seconds. Airports demand utter control of the masses that pass through them. This control is required and insured by a number of humiliation rituals foremost among them passing through security. Any behavior out of the norm is quickly and forcefully dealt with. All people, from a seasoned traveler to a person that flies once a decade, know you cannot behave inappropriately. People simply must conform. In my case that entails a long wait at security and being referred to TSA guards as "adult male wheelchair". 

I sincerely doubt the the captain of the flight "worked with the family for more than 30 minutes to try and calm the teen down". I have never seen a pilot "work" with a passenger for more than a minute or two in my entire life. Calming down passengers is not the responsibility of a pilot. Again, has any reader ever seen a passenger behave out of the norm--especially since 9/11? This does not happen and if it does airport security will rapidly respond. In New York I often hear the commercial "If you see something say something". Of course "something" is not defined but is understood to include all unusual behavior. So if a teen, especially one with Down Syndrome, was "yelling and running" as American Airlines maintains I am sure dozens of people in the boarding area would have called airport security. 

The statement that the "family chose to fly on another airline" and that American Airlines "helped re-accommodate" the family is grossly misleading. The reality behind this statement is as follows: the family was humiliated and deeply stigmatized. They could not board a plane even though they had first class tickets. They had to stay in a hotel, likely next to the airport, and spent a sleepless night worrying if they would be barred from a flight the next day. I assume they decided to fly coach as they had in the past without incident. God forbid a teen with Down Syndrome who has what Erving Goffman called a "spoiled identity" be near other first class passengers.

Obviously this story has hit a sore spot. I deeply resent the way people with a disability are treated at airports and by airlines. I have exceedingly low expectations when I fly. I assume I will receive the lowest level of customer service humanly possible. I assume I will be needlessly delayed. I assume I will be disrespected. I assume multiple FAA violations will occur when I board a plane. In the New York area, I assume the trained personnel responsible for assisting me on and off a plane will not speak English and have no clue what they are doing. I expect all this. I can defend myself and have learned how to adapt to a hostile environment. But what truly enrages me is when people with cognitive deficits are  treated as badly as I am. Who will defend them? Who will serve as a surrogate to protect them from gross injustice? Who will express outrage when they are barred from boarding a plane? I truly appreciate the support the family has received after the fact but wonder where this outrage was when they were refused boarding. 

American Airlines: Bigotry Abounds Yet Again

There are dozens of stories in the mainstream media about a 16 year old boy with Down Syndrome and his parents who were not allowed to board an aircraft at Newark airport. The family in question were not novice fliers. They had flown together many times without incident.  The family is also very angry--anger I can understand as I know all too well how the airline industry knowingly discriminates against people with a disability.  As is usually the case, the airline, in this instance American Airlines, is defending itself and the pilot who decided a 16 boy with Down Syndrome was a flight safety risk. According to American airlines, the boy was agitated and running around the gate area before boarding. This behavior worried the pilot who asked a customer service manager to talk to the family to see if the boy could be calmed down. According to the airline spokesman Matt Miller "that effort was ultimately unsuccessful, and we made the decision to have the family rebooked on a different flight out of concern for the young man's safety and the safety of others". Prior to boarding customer service approached the family twice to explain the pilot was concerned the boy could create a disturbance. There was concern about the boy's size--he is 5'1" and 160--and his seat's proximity to the cockpit. The decision to refuse boarding was not made lightly and based on the boy's behavior according to the airline.

I have two words for the above rationalization: bull shit. According to the family their son, Bede, walked around the terminal before the flight. Lots of people do this. Sometimes their son hums or talks to himself and does so in a quiet voice. According to the family at no point was Bede excitable, he did not run around, nor did he misbehave. So where did things go wrong? The family had the audacity to upgrade their seats to first class. This was a long flight--a cross country flight from the New York area to California. People in first class spend big bucks for their big seats. Much profit is located in first class and the corporate connections are deemed valuable by the airlines.  This is the real issue: people with Down Syndrome are not expected to sit in first class. People who use a wheelchair are not expected to sit in first class. The same can be said for any person with a visible disability. First class seats require first class service. First class service is not what disabled people get. We people with a disability get treated like shit by airlines. Yes, I know the airlines are rude to one and all but special disdain is held for people such as myself who cannot walk or those with a cognitive deficit. We represent work to airline personnel and are out of the norm. Given this, we have the symbolic equivalent of the plague. 

How did the family get home? They were rebooked in economy class on United Airlines the next day. Their seats were in the very last row. All seats and the row in front of them were empty. This was a far from subtle fuck you. 

Lets look at the facts:

The family has flown together approximately 30 times in couch without incident.

The pilot observed behavior he deemed a risk.

The mother was told she cannot video the incident via her phone as she is located in a secure area. 

The only thing different was the family upgraded to first class.

The father stated "We went from first class to last class. From the front of the bus to the back, and the only thing I can conclude is that the airlines do not want people like my son to sit in first class". As one who has flown a good bit that is a reasonable line of thought. I find it hard to fathom how a boy, regardless of his size, represented a threat to the pilots or  flight safety in general. If we accept this sort of thinking espoused by the airline industry no large well muscled male would be allowed to sit in first class. Rather than mindlessly accepting what he was being told the father questioned ground personnel. He repeatedly asked "Is this only because he has Down Syndrome". If I have learned anything in the post 9/11 world, a world where one gives up all civil rights the second you enter an airline terminal, it is not to question authority. When one does this all bets are off. Any behavior or dress that out of the norm opens one to risk--risk meaning you might be detained against your will or be barred from getting on an air plane for a host of dubious reasons. 

I do not expect much to happen. I am sure the story will blow over in a few days. The airlines have consistently been fined by the Department of Justice for violating the rights of passengers with disabilities, particularly wheelchair users such as myself. I suspect the fines levied are lumped into the cost of doing business. I really hold out no hope the airlines will ever change. Institutional bias is very difficult to eradicate. And more to the point, no other passengers are willing to help--ever. This is the down side to the fear mongering Republicans who have waged a never ending war on terrorism. Fear sells and too many Americans have bought into such tactics.  Yikes, what a gloomy conclusion. 

An Untapped Resource

The above video was made and uploaded to You Tube by Elizabeth Acquino. Elizabeth maintains a blog "A moon, worn as if it had been a shell". See http://elizabethaquino.blogspot.com/

I do not usually like emotional videos when it pertains to disability. Inevitably such videos rely on antiquated stereotypes such as pity or inspiration. In my estimation the above video highlights the fact raising a child with a disability is needlessly difficult. While my son is typical and I have not raised a child with a disability I do know what it is like to grow up with a disability. Between the ages of 9 and 19 I went through the medical mill. I suffered greatly as modern medical care back in the late 1960s and throughout the 1970s was primitive at best. Aside from great pain which I vividly recall, I remember my parents firm advocacy for me. They battled doctors, hospital administrators, school teachers, principals,  social workers, etc. They battled for one reason--to protect my rights as a human being. Many times I saw the fury in my parents eyes when some inane rule meant to dehumanize was enforced. At a very young age they taught me to assert my rights--the most valuable lesson they ever taught me.  The point I am striving to get at is to a small degree I get what it is like to raise a child with a disability. I understand this dynamic from the side of a child not a parent. The lessons taught by parents are critically important.  Indeed, most people I know with a disability that have carved out a career and independent life for themselves all had strong familial support. Exceptions exist of course. 

It has long been my belief that parents who fiercely support their children that have a disability are a great untapped resource in disability rights.  Parents enter the crucible of multiple hostile environments--schools and hospitals in particular and protect the rights of their children. The parents I know who have kids with a disability, especially those with significant cognitive and physical disabilities, are skilled at manipulating obstinate administrators and getting the services their child needs and is legally obligated to receive. This is no small accomplishment. Where parents and disability rights advocates fail is in advocating jointly. Parents too often are bought off by schools--we will give your child all you request provided you do not agitate further. And who can blame such parents for taking such a deal? I simply do not know how to get these two groups together. Schools certainly do not invite disability rights activists to their schools nor do hospitals or nursing homes.  What children are taught about disability is antiquated in the extreme--if they learn anything at all. Disability rights is not even a tiny slice of the curriculum. It is utterly absent when my son was a school boy--it is still absent at the university level in spite of the fact he is going to a school that has a significant commitment to disability scholarship.  This is the fundamental problem--the complete lack of awareness that disability rights is a civil rights issue. When I write this I feel like a broken record--one that no one is listening to.  This lesson must be taught at a young age--this makes me realize just how lucky I was as I often say I hit the "parent lottery".  I would love to hear from readers about how to get parents of children to embrace the work and advocacy of ADAPT or Not Dead Yet for instance.  

Paralympics Highlight Giant Cultural divide

With the Paralympics about to start in London I have been reading much more about not only the athletes but the plight of people with a disability in Britain. The use of the word plight is chosen for a specific purpose--the British government under David Cameron is literally attacking the rights of people with a disability.  I am not exaggerating. The government is trying to get 500,000 people off the Disability Living Allowance.  The social situation is dire. According to Owen Jones, writing in the Independent on August 26 Cameron:

leads a government that is systematically attacking the rights of the sick and disabled. Their financial support is being confiscated; their ability to lead independent lives attacked; they are subjected to humiliating tests; they are demonised as "scroungers" and drains on the public purse; and abuse towards them is soaring. Keith Robertson, from the Scottish Disability Equality Forum, is warning that so-called welfare reform is leaving disabled people feeling "suicidal".

Here is the link for Jones' article, I urge everyone to read it. http://www.independent.co.uk/opinion/commentators/owen-jones-david-cameron-praises-paralympians-but-his-policies-will-crush-them-8082036.html

Very few people will be exposed to the Paralympics in the United States. Coverage will be taped delayed and limited to highlights. I believe NBC Sports will broadcast the games for about an hour every night. Sadly, this is more than what NBC had planned--the games were originally only going to be streamed online at the Paralympic website. In short, virtually no one will see the games. I find the contrast between the Olympic Games and the Paralympics striking. Total media saturation versus virtually no coverage or reporting. Worse yet, is what is reported in the mainstream media. The formula seems to be set in stone: The paralympian has a great and horrific background story. The athlete overcomes huge obstacles, the larger the obstacles and the more visible the disability the better. The athlete of course then wins an event, pictures are taken and a corporate sponsors feels ever so good. This is nothing short of perverse. It undermines the humanity of the athlete in question and reduces them to a "feel good story". Worse yet, is the fact one of the corporate sponsors is ATOS. This corporation is leading the drive to eliminate the benefits people with a disability receive. ATOS is being paid $100 million pounds this year to "test" sick and disabled people and decide if they are fit for work. Who is fit for work: a person with cancer who takes oral chemotherapy, a person that can move a wheelchair, a person with a visual impairment that can distinguish a word or two of braille. Of course all testing has been designed by a computer--the same reason why ATOS is a sponsor--they provided computer technology.

 Groups such Disabled People Against the Cuts (DPAC) and UK Uncut correctly maintain the entire process designed and operated by ATOS is degrading. I anticipate major protests will take place at the Paralympic Games. The fact ATOS is a sponsor of the games is unethical even by corporate standards.  I find the sponsorship surreal. I  am flabbergasted the International Paralympic Committee was willing to accept  ATOS as a sponsor much less a "major" sponsor. But then again money has a funny way of changing things. The press is of little help, both here and in Britain. I am sure when the highlights are shown on American and British TV not a word of dissent will be uttered. Instead CAmeron and ATOS will get exactly what they want--to appear as though they support people with a disability. Sadly, nothing could be further from the truth. 

ESPN Discontinues Mono Skier X

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

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

It's definitely perplexing," 2011 Mono Skier X gold medalist Josh Dueck said. "It's not the only mono skiercross race, but in my eyes it is because it does it on a level no other event matches. There's no better exposure we can get for our sport. And right now we're young and growing exponentially. This is a huge, huge hit to the evolution we're seeing. It's hard to digest.

The loss of the Mono Skier X is particularly unfortunate as the event was gaining serious traction. There was what I like to call a serious cool factor associated with the mono skiers. This interest was important in that those that watched the event were likely to be supportive of average adaptive skiers--ordinary weekend warriors like me. This in turn would benefit adaptive ski programs in a myriad of different ways. IN short, this is bad news and I hope mono skiers will not be disproportionately affected. 

Tony Nicklinson Dead:

The BBC has reported Tony Nicklinson has died just a week removed from his failed effort to convince a British High Court to allow a person to give him a lethal prescription. I have followed the stories about Nicklinson who was "locked in" after a stroke in 2005. He was very clear he considered his life a living nightmare and that he wanted to die. I found Nicklinson's comments about his life and suffering distasteful. I also believed his words were destructive to people with a disability as they reinforced the antiquated idea that death was preferable to life with a disability. What I found hard to fathom was Nicklinson's contention that his life was a living nightmare never changed. He was consistently miserable and believed his suffering was singularly unique.  Yet Nicklinson was in many ways lucky. He had a wife who was supportive and two children that clearly loved their father. He did not go into bankrupt paying for care. He was able to communicate even though it was a tedious process. I am not dismissing the fact being locked in is extra-ordinarily difficult. I am merely pointing out that Nicklinson was not singularly unique. In fact the only thing that made him unusual was his consistent misery. And the media loves miserable people with a disability. Pity stories abound and a man like Nicklinson provides great visuals. Pity the poor man pictured with his wife and children. No mainstream media outlets write about all the other people with comparable conditions that move on with life--and this is exactly what the vast majority of people with a disability do. We move on, adapt and lead ordinary lives. This does not sell newspapers. This does not make people cry. This does not make people thank God they can walk and talk and do not have a disability.  This line of reasoning is maddening. And this is exactly why I have refrained from writing about Nicklinson. He pronouncements about his life being a living nightmare simply made me mad. Apparently I am not alone. This morning I read "Self Pity is Still Not Lethal! On Tony Nicklinson" written by Miss Dennis Queen (was Claire Lewis). See http://missdennisqueen.livejournal.com/49897.html She wrote:

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

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

Fay Vincent in the Wall Street Journal

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

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

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

“Scammers use ADA to blackmail businesses (larger and small)" 

“His claim is just emotional exaggeration”

 "Business owners are asked unfairly to shoulder burden alone"

 "I know a dozen of such corners [curb cuts] that I’m guessing cost 100k minimal".

 "I don’t think its right to require all businesses make adjustments to suit a few people so their feelings aren’t hurt". 

"Oh here we go again with the snide accusations of thoughtlessness and condescension. You’re hurting your own cause".

 "I had a discussion not long ago with two people who wanted a law forcing all software manufacturers to optimize their programs for the blind… I pointed out the obvious difficulties and costs involved in making sure 0.1% of the population can use every app they might ever want to… I was promptly called an assortment of bad names".

 "The ADA has generated a lot of hostility because its approach is heavy-handed and punitive".

 "The world is full of selfish and self-centered people who take access for granted and assume that if they’re taken care of then all’s right with the world".

 "The ADA comes with force. The force of the State".

 "It’s so sad to go to a small hotel with a pool and see handicap access contraption collecting dust in the corner".

 "The ADA is a bridge too far".

"Hey, I’m a lefty. You don’t hear us complaining. We’ve learned to make do".

 "I appreciate the challenges you face, Mr. Vincent, but it seems awfully selfish of you to expect the world to reconfigure itself based on your specific needs at no cost to you".

 "George HW Bush made a HUGE mistake with this bill… This law has forced closure of some long run businesses and been a HUGE waste of taxpayer money".

 "Under the guise of compassion we have bastardized laws that do less for their intended purposes and more to line the pocket of some lawyer".

 "Mr. Vincent’s complaint involved a luxury hotel and prominent Manhattan’s men’s club. From that I can conclude Mr. Vincent could afford a valet when he travels".

 "He sure was strident".

 "I believe the ADA to be an overreach and over burdensome".

 "The disabled certainly cannot be expected to disassociate themselves from normal participation in society , and a civil society owes an obligation to its less fortunate citizens to provide accommodation reasonable to its standards and resources. Yet, the cost of access by some, the few, or in our case the none, jeopardizes the viability of entity itself".

 "No matter how much we spend, we cannot make the handicapped unhandicapped: it is just not possible".

 "My father, may he rest in peace, was handicapped… He always found a way to overcome his infirmity".

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

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