Rampant Ableism and Politics

Virginia State Delegate Bob Marshall, a conservative Republican, is in deep trouble for good reason. At a press conference opposing funding for Planned Parenthood he stated the following:

"The number of children who are born subsequent to a first abortion with handicaps has increased dramatically. Why? Because when you abort the first born of any, nature takes its vengeance on the subsequent children. In the Old Testament, the first born of every being, animal and man, was dedicated to the Lord. There's a special punishment Christians would suggest."

In stating the above Marshall was preaching to a friendly audience composed of conservative Christians and other religious leaders. I listened and watched Marshall's statement. His words are not being taken out of context nor were they poorly constructed. He said what he said and meant it. Children with a disability are God's "vengeance", punishment for previous abortions. This claim is not only false but offensive. Disability representing God's wrath is a belief I would like to think has past into what my son calls the "olden days". Thirty years ago when I began using a wheelchair I was occasionally accosted by religious fundamentalists. Most thought my presence was offensive. More than once I was told that I was the "anti-Christ" or that if I really wanted to walk all I needed to do was pray harder. These comments hurt and drove me from having any connection with organized religion. It also reinforced why I believe strongly in the separation of Church and State.

I am stunned that an elected official no matter how conservative would have the audacity to state what Marshall did. His thinking is so antiquated it is hard to believe people believe such nonsense. Marshall issued an apology, not a very good one, and it is clear he has utterly failed to realize just how hateful his words were. Marshall has a penchant for controversy and has been nicknamed "Sideshow Bob". But Marshall's words transcend bad taste and conservative politics. They are tied to a deeply rooted fear of disability that is pervasive in American society. Disability is inherently bad, something to be feared. Disability is a tragedy and either God or someone else must be held responsible. This line of reasoning is dehumanizing in the extreme. I wonder where the great defender of "special needs families and children", Sarah Palin, is today. I am hardly alone for Penny Richards noted the same thing yesterday. Palin has not spoken out against Marshall or uttered one word of protest. Palin appears to only objects to bigoted remarks when it suits her political ambitions, something some have called Palin's satire clause. No wonder people in the disability rights community have no respect for her or conservatives like Marshall. Our existence, after all, is God's vengeance.

Lennard Davis, Sarah Palin and Disability Rights

There are many scholars in the field of disability studies that I respect. Foremost among those scholars is Lennard Davis, Distinguished Professor at the University of Illinois at Chicago who published a wonderful diatribe against Sarah Palin, "Don't Trust Sarah Palin When She Cries Disability" in the Huffington Post (February 23). Many have weighed in on the use of the word retard, myself included, and the most recent political theatre related to an episode of the Family Guy. This prompted Davis to perceptively lament the latest "Sarah-Palin-Stands-Up-For-Disabled-People" incident. How and why Palin is perceived as a champion of disability rights is a mystery. Yes she gave birth to a son who has Down Syndrome and talks about "children with special needs". However, this hardly makes her an expert on all things disability. Indeed, scratch the surface and her record regarding advocacy for people with a disability is slim or at best mixed. I never hear her talk about the ADA, disability rights, health care reform as it relates to people with a disability, waiting lists in states for needed services that affect many adults like her son Trig. Instead, Trig and her entire family are used as props in an effort to exploit any situation to her political advantage. I suppose in America today this passes as effective politics. I just don't like it nor does Davis who noted the Family Guy controversy "isn't about Palin getting the joke: it's about her exploiting the situation to attack the left in any form". Davis concluded the "moral of this story isn't that the Family Guy is an insensitive show; it's that Palin is using Trig as hostage to shield her from the shoot-out of the last election. With Trig in tow she's not the incompetent former governor of Alaska or the incendiary anti-wonk, she is simply good Mom protecting her child and all people with disabilities."

To me, Davis' comments highlight the fact that Palin is the latest person mistakenly cast to represent the interests of people with a disability by the mainstream media. Before Palin we had Christopher Reeve and they share one thing in common. They either knew little about disability rights or simply did not care about the violation of those rights. Reeve accepted a medical model of disability without thought and focused on cure alone. While cure was a laudable goal, the way he went about raising money was offensive, demeaning and undermined decades of disability activism. Palin loves to talk about "special needs children yet she fails to acknowledge such children become adults. Those adults need resources and support services but that is not on Pailin's agenda. Shame on both Reeve and Palin for being so narrow minded.

Rather than just bemoan the lack of any nuance as it relates to disability rights let me ask the following: What can be done to advance disability rights? This brings me back to Davis and disability studies. If one goes to lennarddavis.com a wealth of information can be found. Not all of Davis work will appear to the general reader or activist in disability rights. But what really has always made me respect Davis is not just his scholarship but rather his ability to emphasize the importance of disability studies in the world we live in. Disability studies is not an abstract idea--it is a field that can make a real contribution to society and those with and without a disability. Thus he wrote:

I have come to see that disability studies is imperative. It is crucial that students in elementary and secondary school, as well as students in the university, grow up in close contact with people with all kinds of disabilities. It is crucial that disability studies be included in the curricula of schools so that when Rosa Parks and the civil rights movement are studied, when films on Stonewall are screened, Chicano authors are read � that disability history and culture be included as well from the accomplishments of Vietnam Vets and Ron Kovic to the Berkeley movement led by disability activist Ed Roberts to the Deaf President Now movement at Gallaudet University. The drafting of the ADA should be studied the way that the drafting of the Declaration of Independence is studied. Students should be able to read the work of Nancy Mairs or Andre Dubus, to know about the disabilities of artists and writers like James Joyce, Harriet Martineau, and William DeKooning, as well as the more obvious Beethoven or Ray Charles.

To date, disability studies is an after thought in education. Few secondary schools mention much less teach anything remotely related to disability rights. Institutions of higher education are even more hostile to the inclusion of disability rights. Exceptions exist but they are as common as a man or woman with a disability that is gainfully employed. Here lies the problem: decades after forced institutionalization and segregation ended a legacy of invisibility remains. We people with a disability are out of sight and out of mind. People may cluck about access but when it comes down to a vote on whether to purchase that expensive bus lift or install an elevator it gets shot down every time. Why do such expenses get shot down? Based on my experiences there is only one logical explanation: the presence of people with a disability is not wanted nor is it valued. My existence is not valued. Trig Palin, the adult he will become, will not be valued. People simply don't care about disability rights, it is not a blip on the radar of most Americans. If people did care transportation, housing, and employment would not be inherently difficult for people with a disability. But difficult is common place and barriers, social and architectural, abound nearly two decades after the ADA passed. So on this gloomy Tuesday morning I wonder when and if I will ever be equal.

Why Equality is Elusive: Part II

Skeptics may wonder if I am being unfair in my last post. Surely images of the sort I posted are unusual. Sorry, but this is simply not the case. Take the above image from a notorious notorious ad campaign in 2000 that appeared in dozens of outdoor and sporting magazines across the country. I recall seeing this ad and being shocked. I was not alone. Nike received a wave of complaints and not only pulled the ad but issued an apology. If anything is unusual about the above Nike ad it is the fact it was pulled. Imagery of this sort is sadly the norm and abounds. I see it every day on television, in newspapers, on the internet and in a plethora of magazines. Some people in disability studies call such images examples of the "defective person industry". The fact is mainstream imagery associated with disability is overwhelming bad. There is simply nothing cool whatsoever about disability. Disability in the minds of most is bad, inherently bad. The only exception I have come across in my life time is sports. Adaptive sports, especially mono skiers, have made major inroads toward being cool. I am not an elite adaptive athlete but I sure do appreciate the trickle down effect they are creating. I will surely never enter the X Games or even come close to what athletes such as Tyler Walker can accomplish on his mono ski but his accomplishments resonate within me and the general public. I know this because when I ski there is a residual cool factor I find captivating. When I ski I am not the poor bastard that uses a wheelchair and lives a limited existence. No sir. I am another guy out skiing, one who is cool in the eyes of many. This is liberating and I only wish more people with a disability could find a way to access the slopes. If I am to ever truly be equal in American society the above Nike ad will be replaced by radically different images. Those images may be starting to change with adaptive athletes and I hope will be accompanied by those that depict people with a disability active in every facet of society. When that day takes place I will enjoy real equality. I hope to live to see that day.

Why Equality is Elusive

I came across this ad campaign this morning. I am offended. I am worried too. My son is about to get his drivers license. Like most parents, I have mixed feelings about this milestone. Part of me is proud and delighted I will no longer need to taxi my son to and fro day and night. However, this thought is tempered by the knowledge an unacceptable number of teens die every year in car accidents. I am worried about his lack of experience and judgement. I am also not happy about what is going to happen to my car insurance rates that will surely sky rocket once he has his license. But what I have really been thinking about is the meaning of this ad campaign. A clear message is being sent and it extends well beyond the tag line "Don't Drive Stupid". I am not opposed to the idea that teens need to be educated about the inherent dangers of distracted driving. I am all for anything that effectively saves the lives of young people that have so much of their lives ahead of them. But I seriously question if such damaging efforts at mind control work. Sadly this is what passes for education today that is routinely directed at teens. Nuance is absent and in its place is fear mongering. Based on my experience and knowledge of my son's peer group ads such as the one above are grossly ineffective. Teens lack experience and I question their judgement but they are not stupid people. Treat them with respect and give them the facts. With regard to driving, the facts are crystal clear--teens are far more likely to get in an accident than other drivers. This is not in dispute. Even the most jaded teen will admit this. I hammer home this point every time I drive with my son and I hope the message sinks in when he is on his own.

So what is the point of the above ad and why am I offended? The point of the ad is to scare teens. And what should teens be afraid of? Why using a wheelchair of course. Lost among the text and sad sack image is the fact that "nothing kills more Utah teens than auto crashes". This statement is more than sobering enough. But the ad relies on antiquated and deeply rooted fears to scare teens noting that "every year far too many Utah teens go from cool to crippled in the blink of the eye". Great, this undermines forty years of legislative initiatives meant to empower people with a disability. Teens are being taught that a wheelchair is akin to a tragedy, a fate worse than death. Thus if you drive stupid you can "start shopping for your wheelchair now. And hey, if you think that's harsh , wait until the day you roll it into school". Note the use of the word it. This is the ultimate dehumanization. A person that uses a wheelchair is not recognized, they are an it. And that it, a wheelchair is bad, very bad. By extension anyone that uses a wheelchair is not fully human and that is indeed a harsh reality. Yet that reality, dehumanization, is a social creation. I am just as human as someone that can walk. Well, I was fully human until this ad was posted and this human is pissed off.

When I combine the dehumanizing aspect of the ad with the fundamental flaws of secondary schools it is no wonder people have a skewed view of disability and its meaning. Based on my son's experience to date, I cannot help but conclude schools do a terrible job teaching history. Sure students learn a lot of supposedly important dates and milestones (mostly in American history) but no attempt to is made to teach them the importance of the many facts they are required to parrot back on standardized exams. What they are taught quickly becomes boring if not meaningless. Worse yet is what they are not taught. Foremost on that list is a vibrant history related to disability rights. They are exposed to the Civil Rights Movement and Women's Rights as being essential moments in American history. Yet in my son's AP American History text book not a single word is devoted to the ADA or disability rights. I am sure there is not a single student or teacher in my son's school that has ever heard of Ed Roberts, the man known as the founder of the independent living center movement. This omission is glaring and has far reaching implications. In place of knowledge students are exposed to well financed and public ads that depict wheelchair use as a fate worse than death--"to go from being cool to crippled in the blink of an eye". What I want to know is what do teens in Utah think after they see this ad? Do they really change their driving habits? Maybe they do. But they have also been sent a blunt message about disability and wheelchair use. No wonder people with a disability encounter so much bigotry nationwide. I cannot possibly be cool. I am afterall the ultimate symbol of all that go wrong in the blink of an eye. Surely we can do a better job educating young people.

Retard: The Meaning Behind the Word

Retard according to my dictionary is a noun. Offensive slang. Used as a disparaging term for a mentally retarded person. An organized campaign has been undertaken to purge this word our vocabulary. Major inroads have been made and any usage of the word is frowned upon. People such as Patricia Bauer has chronicled the effort to ban the use of the word retard on her website and it is well worth reading what she has written and the many links she provides. Her website is veritable wealth of information. To date, I have refrained from writing anything about how the word retard is used. Perhaps being around my son as he has grown has made me hesitant to enter the fray. I hear him and his friends use the word retard far too often. I correct them once in a while and the response is always the same--rolling of the eyes and belief I am being ever so sensitive. This bothers me but not too much. They don't understand the history and legacy of exclusion as it pertains to people with a physical or cognitive deficit. They have never been taught a thing about disability rights at school and I am certain not a single person within my son's peer group has ever heard of what took place at Willowbrook Institution 30 year ago. At an abstract level they understand people with a cognitive deficit are easy targets and my son and his friends would agree teasing or picking on such people would be wrong. But in their minds the word retard has nothing to do with people who have a cognitive deficit. When I make the connection they respond with silence--they do not see any link. And here is the important question: why do they not see the link? The answer is not complicated: people with a cognitive deficit are the most stigmatized and isolated population in this country. They are segregated in "special schools" and group homes. The bigotry they face is overwhelming and makes everything I have experienced as a paralyzed man pale in comparison.

The latest controversy regarding the use of the word retard is tied to White House Chief of Staff Rahm Emanuel. Before that President Obama got in trouble for his derogatory remark about the Special Olympics on the Tonight Show. All this has become political theatre. Sarah Palin, perceived to be an expert on disability issues because she gave birth to a child with Down Syndrome, called for Emanuel to resign and then turned around to defend Rush Limbaugh for his repeated use of the word retard on his radio program. Sadly, this is what national politics has deteriorated to. Lost among the furor and screaming is the social and economic plight of people with a cognitive deficit. Funds for "special education", adult education, job training for adults, and support for group homes are being slashed nationwide. Waiting list for essential services are the norm and no one cares. Out of sight and out of mind; the most vulnerable among us are suffering. In place of a real debate about why such services are being cut we get political pundits discussing Palin's silly Facebook demand for Emanuel to resign. Gosh, it is embarrassing to be an American sometimes.

Progress can be made for those that want inclusion. I see such inclusion when I ski. At adaptive programs I have been exposed to a range of people with cognitive issues I did not know existed. At first, I was ill at ease. I had never been around people with such conditions before. What I have learned is that such people are just like me. They have strengths and weaknesses. They have likes and dislikes. They have good days and bad. They are not the problem. We are the problem. We meaning our society that needlessly discriminates and isolates people with cognitive deficits. Language may be malleable but one thing has not changed: the broader problem is a legacy of exclusion that remains firmly entrenched. Thus I fully support the campaign to end the use of the "r" word. But it is not just the word that I want to ban. I want real social change to take place. I want to see children and adults with cognitive deficits embraced by society as valuable members. Not so long ago people with physical disabilities faced the same challenge. This battle has not been won in spite of 40 years of legislation that has sought to empower people such as myself. Laws are one thing and the social demand for equality something else entirely. People have been taught inclusion for people with a physical disability is the right thing to do. Attitudinally people may accept me provided my inclusion is not too expensive. But when it comes to inclusion for people with a cognitive deficit there is no such effort or even pretense of inclusion. I realized this a few years ago at a minor league hockey game. My son and observed a group of people with cognitive disabilities show up to a game. I pointed this out and told him what a great idea it was. Anyone I told my son can enjoy a hockey game. However, within 30 minute I saw a this group of people surrounded by a sea of empty seats. It was painfully obvious the other fans had all moved in mass away from them. This deeply disturbed me and brought back many painful memories when it was socially acceptable to complain about the presence of people with a physical disability. That night I recalled the times when I was refused service in restaurants, was prevented from boarding an airplane because I was deemed a flight risk, or barred from entering a multitude of buildings because there was no need to build a ramp. Progress has been made for me and millions of others with a physical disability but I lament the utter lack of progress made for those with a cognitive deficit. This is a human rights violation worthy of discussion.

The I Word Infects the X Games and Mono Skiing

The Winter X Games were held last weekend. As always, my primary interest was to the mono ski competition. Since 2005 the best mono skiers have competed at the X Games. Since its inception, the mono ski race is known to be an exciting, featuring spectacular crashes, huge table top jumps, and speeds that approach 80 MPH. Last year I was amazed that ESPN used the mono ski race as a teaser to keep viewers interested. This was a sure sign that the mono ski race had become a primary feature of the X Games. In the words of my son, the mono skiers are bad asses, a compliment and recognition of the skill and nerve necessary to compete at the highest level. This cool factor amazes me as does the fact the mono skiers race on the same course as Boardercross and Skier X races.

On Sunday I watched great mono ski races marred by the I word--the announcers repeatedly stated the mere fact the mono skiers were able to get to the mountain was "inspiring". Ugh! If there is one word I hate when used to describe a person with a disability it is inspiring. What is inspiring is the race and intense competition. There is nothing inspiring about getting to the mountain to compete, any suggestion to this affect diminishes the ability and world class skill of the athletes involved. If the executives at ESPN really want to grow this event into a premier part of the X Games they need to be fare more careful about the way the announcers describe the race. The mono ski race is incredibly popular and gets more exposure than the Paralympics. This is gratifying to the racers such as Tyler Walker who won his second straight Gold Medal. He stated that "This event is really big for adaptive skiing because it gets a huge amount of exposure. People really seem to enjoy watching the event. It gives us a lot of recognition. It's pretty cool". Cool, indeed! What is fascinating to me is how inclusive the mono ski event is. This is in direct contrast to the Paralympics that exist in a vacuum, at least within the mainstream media. Paralympians have been slow to gain parity with non disabled athletes and coverage is often broadcast weeks later as a special 90 minute broadcast on a slow Sunday afternoon.

What I find gratifying is the X Games have changed the way adaptive sports in the form of the mono ski race are covered. Thanks to ESPN, not its announcers, viewers are exposed to the best mono skiers in the world. The coverage of the event is no different. The winners are interviewed after the race and brief biography is provided. If the word inspiring is to be applied here there is only one way it can be constructive. So instead of getting angry at the use of the word inspiring I thought the race could be inspiring but not for the reason implied by the announcers. Who could be inspired? My first thought was a child who is a novice adaptive skier. Imagine a young boy or girl with a disability that is seeking a role model, a figure to inspire them to be the best. A person like Tyler Walker, a gifted mono skier that appears on television. Mr. Walker is not on a special program but rather included in the X Games with other athletes those with and without a disability. I can readily imagine a young person with a disability being tremendously impressed. I know if I were young I would have been in awe. I had no crippled role models when I was young so maybe I am too critical of the I word. Thus I hope there is some kid in New Hampshire where Walker lives or any other state for that matter who has been inspired. At worst they along with millions of others viewers got to see a few great mono ski races. I just wish my skill level approached those that competed.