Your Typical Deli Experience

For the last few days I have had my good friend Stephen Kuusisto staying at my home. If you have not read Kuusisto's memoir Planet of the Blind and his blog under the same name you are missing great writing on disability. Steve is more than just a great writer. He is one of the few academics I have met that is not only exceptionally smart but hysterically funny. He also has a penchant for dropping F bombs multiple times a day. Thanks to him I have had the opportunity to hang out at Guiding Eyes for the Blind in Yorktown, New York.  While he does his research toward his next book I have been working on a review essay regarding the divide between bioethics and disability studies scholars and disability activists. Writing this essay has been a struggle.

The Guiding Eyes for the Blind facility and the property it is situated on is spectacular. It is without question the most beautiful disability related institution I have ever been to. I have found being around Kuusisto and the staff I have met at the Guiding Eyes for the Blind energizing--far different from my usual solitary existence. It makes me yearn for a collegial academic environment. It has also boosted my ego, a dangerous thing for any male academic. Thankfully being disabled is the perfect cure for a big ego. Yesterday Kuusisto and I went out to a local deli to pick up lunch. Let me tell you a paralyzed guy using a wheelchair and a blind man with a seeing eye dog attracts attention. And yes this sounds like the start of a bad joke. At the deli I parked and Kuusisto got out first and we were chatting as I put my wheelchair back together. Kuusisto was leaning against a car when the owner showed up. The first words out of the female car owner was "I have a disability too. You are inspiring". I looked at Kuusisto and we instantly knew we were about to be verbally assaulted. This was a woman that was not aging well. She was on the north side of 40, had a severe blonde hair job designed to make her and others think she was still 20 something. The look was not working and there had been some hard miles put on her body and face. I suspect in her life time she had consumed too much alcohol and drugs. We obviously were public property and like many people far too willing to share her views despite the fact they were unwanted. We did not ask to be abused. We did not have a sign on our shirts stating abuse me. In the estimation of this woman, we were inspiring because we were out there in the world. We overcame our disability and the pain and misery we experienced. She of course knew what a mighty struggle this was. She told us she overcame her disability, bitterness and abject misery. She was not bitter. No sir. She conquered her disability.

I instantly knew her type. Any sort of engagement would be futile. I became mute. Kuusisto stated a few benign words to appease her. This was not a teaching moment. In her mind we were the archetype of disability, a belief etched in stone. It is experiences such as these that provide fodder for much laughter. This woman had no clue. We have joked a lot about this woman. She created a good story. But today I am not laughing. Today I am wondering when exactly will such ignorance disappear. When will people such as myself and Kuusisto, each of us highly educated authors, be treated with respect people without a disability enjoy. When will I cease to become public property. When will my life be ordinary. When can I be an anonymous middle aged white male. When will I not be subjected to baseless ignorance the woman in question was all too eager to share.

Headlines Are Important

Houston Police Shoot Wheelchair Bound Amputee Threatening People with Pen

Houston Police Kill Wheelchair Bound Man

HPD Officer Fatally Shoots Man in Wheelchair

Police Kill Mentally Troubled Double Amputee

Cop Shoots and Kills Man in Wheelchair 

Police Officer Kills One Armed One Legged Man

Sissy Cops Murder Wheelchair Bound Innocent

I could have provided many more headlines but they are all variations on the same theme. What immediately struck me was the fact not a single headline included the name of the wheelchair bound double amputee who was shot by a Houston police officer--heavy on the sarcasm here. The human being killed was Brian Claunch. Brian Claunch was shot dead. I know nothing about Brian Claunch�s life. Based on news reports Brian Claunch lost his limbs in a train crash. Why this is important I do not know.  CNN reported he had schizophrenia and bipolar disorder. All reports state he was shot in a group home�a home specifically set up for mentally ill patients who are placed there for 24 hours after being released from the hospital. No reports state why he had been hospitalized or whether he had been hospitalized at all. All reports state Brian Claunch created a disturbance and the police were called at 1:30AM. Police state Brian Claunch cornered a police officer in his wheelchair and threatened him. According to the police Brian Claunch was holding a shiny object and that one of the police officers feared for his safety as well as the safety of others. Brian Claunch was shot once and died at the scene. The object he was wielding turned out to be a pen.

Some reports state the quarters inside the group home were cramped and that this was a variable in the shooting.  Juan Garcia described as the group home manager and in other reports as the owner of Healing Hands Home stated that he knew Brian Claunch for 18 months.  Mr. Garcia stated Brian Claunch was in his mid 40s and liked to doodle.  Garcia had given him a black felt pen to draw with two days prior to the shooting. Garcia stated Brian Claunch �had a temper. He could fly off once in a while. I don�t want to say he did anything or they did anything�. The night he was shot Brian Claunch was upset because he was not allowed to smoke nor given a soda.  Brian Claunch was so irate a staff member called 911. Unconfirmed reports state Brian Claunch was capable of making people in the group home feel threatened despite the fact he used a wheelchair.

Obviously I have used Brian Claunch�s name multiple times�far more than necessary. I have done this to establish the simple fact Brian Claunch was a human being. Brian Claunch's humanity was denied in all headlines. He was used to sell newspapers via catchy headlines designed to prompt outrage. How can a police officer kill an unarmed double amputee wheelchair bound man? The hysterical headlines all accept as a given a wheelchair bound double amputee could hardly represent a threat--one headline even calling the police sissies. We all know people with a disability are not a threat to the general public's safety. Afterall, there are steps to get into most homes and they serve as an effective barrier. Who wants a double amputee wheelchair bound person in their home?   All the stories I read ignored what I consider to be the important issues of the case. For instancce, I wondered are Houston police offers trained to deal with people such as Brian Claunch who was apparently mentally ill? If so did they send a trained officer or simply the nearest person on patrol? Exactly why was Brian Claunch living in a group home that was supposedly designed to observe people with mental illnesses released from the hospital for 24 hours? What were the conditions in the group home? If the rooms of the home were cluttered why was this the case? What sort of staffing did the group home have between midnight and 7AM?  More generally, what was Brian Claunch like? Was he homeless? Had he been in and out of group homes? Had he caused disturbances in the past as was suggested? These questions are worthy of our attention. Instead the mainstream press chose to dehumanize Brian Claunch--reduce his life to "wheelchair bound double amputee".  Now that is a tragedy built upon a tragedy.  

BBC Gallery for touring exhibition

BBC North West Wales have produced a gallery of images to showcase the touring exhibition for Powering the World: Looking at Welsh Industry through Archives, which is currently on display at Gwynedd Archives

Made up of 8 banners, it showcases the most interesting items from the catalogued collections and demonstrates that business archives contain records relevant to individuals and communities today.

It will continue travelling to archives, museums and libraries throughout Wales. The Archives and Records Council Wales administrative officer will now organise the location of the exhibition, please get in touch if you would like more information about hosting it caroline.tomlin@cardiff.gov.uk  

NBC TV and the IPC Complaints

NBC has been subjected to severe criticism for its coverage of the London Olympics. I watched virtually none of the games. I was interested but have a sharp preference for watching sports live.  The vast majority of NBC's coverage was tape delayed and formulaic. The live feeds were painful to watch.    I also had a much greater interest in the Paralympics and did not want to get too absorbed by the olympics. I should have felt free to watch as much of the olympics as I wanted because not one second of the Paralympics was shown live. In fact NBC aired a grand total of four one hour recap shows of the entire Paralympics. Yes, a grand total of four hours of the Paralympics was broadcast. A 90 minute NBC special will be broadcast on September 16 to bring the total number of hours broadcast to five and half hours. This is disgraceful. Many others share my opinion. Other nations devoted significant coverage to the Paralympics. Japan aired Paralympic coverage nightly. Australia aired 100 hours. The UK aired 400 hours and drew spectacular ratings. 

The International Paralympic Committee is not happy. What is the point of owning the rights to the Paralympic if they are not going to aired? In Deadspin, an online gossip rag, I read an interesting take on NBC's lack of coverage. Not exactly where one would expect to find any insight. According to Barry Petchesky:

 "It's a tough situation. No U.S. broadcaster wants to bid for the rights, because too few viewers care to make it profitable. In which case NBC is just being charitable, but isn't patronizing the Paralympics exactly what you're not supposed to do? So there's no way to make money off of them, no way to respectfully give them some scraps of air time�do the Paralympics have to be broadcast in markets that don't want them? You know what? Let's just get back to blaming NBC, before we get into some uncomfortable questions here.

I want to ask those uncomfortable questions. Among those questions is why is no one in the American media is asking about why the Paralympics were not aired. It is as though the Paralympics never took place. ESPN did not discuss the Paralympics at all--not even as filler in the middle of the night preferring to air endless loops of Sports Center. I caught a few references to Oscar Pistorious, by far the most famous Paralympian, on the national news.  The Wall Street Journal published a few puff pieces, forget the New York Times, they loath disability issues. The IPC has made some noise in the last day or two. The president of the IPC has stated "We'll examine their values as they will examine ours. If the values fit, we've got a chance. If they don't we'll go somewhere else". I have no idea what this statement on values means. I do know the IPC could not sell the games to any broadcaster. And this is the most uncomfortable question. I know of only one person that has taken this question up--Aimee Mullins--who was identified by the Guardian as "chef de mission" of the Paralympics. In my opinion Mullins is one of the most insightful people when it comes to sports and disability. If you have not seen her TED Talk online about disability I urge you to find it--it is widely available. Mullins made some interesting points in the Guardian article "US Paralympic Coverage Disappointing, says chef de mission". Link: http://www.guardian.co.uk/sport/2012/aug/31/us-paralympics-tv-coverage-disappointing

"The fact that not just the UK, but millions of people all over the world are watching this on some of their largest television stations � Australia, France, Germany � I think that the value of Paralympics broadcast rights are going to be something that NBC won't be able to ignore."Of course I would love for more live coverage while the Games is happening, but I am less distressed about it than I was in past Paralympic years because the glory of the internet means that people aren't being deterred by the fact that it's not on NBC � they're going to the internet and watching it anyway."

Unlike Mullin I am distressed. She is correct people who want to watch the Paralympics can do so on line. To me, this is akin to preaching to the choir. The important audience to tap into is the casual sports fan that know nothing about adaptive sports. The target audience for the Paralympics is identical to those that watched the olympics in great numbers. If this audience can be reached, if this audience watches the Paralympics it could foster real social change. The problem is NBC does not give a damn about fostering social change. NBC exists to make money. They will ignore the Paralympics forever. The Paralympics will accordingly remain virtually unknown and relegated to network obscurity. 

Mullins made one excellent point worth quoting in the Guardian--a point that far too few are willing to acknowledge: it is important to be open minded about the meaning of disability. It is in your best interest as well. Thus I will conclude with Mullins words:

"At some point in every person's life you will need an assisted medical device � whether it's your glasses, your contacts, or as you age and you have a hip replacement or a knee replacement or a pacemaker. The prosthetic generation is all around us. People don't realise it, but it's going to be you � your parents, your child � but that's OK because it's never been a better time for that to happen. The leaps in science technology are extraordinary and they are only speeding up."

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.