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Wednesday, June 30, 2010

I Believe Part II

Earlier today I lauded Stephen Kuusisto's "Disabilities: Forms of a Fair Kind Among Us". He followed up this remarkable post today, June 30, with "How Many Things Are Required of a Person With a Disability to Be Beautiful?" Kuusisto began his post with a quote from Marsilio Ficino, a Platonist with whom I am not too familiar with. However, I understand why Kuusisto was drawn to the following quote: "What then is the beauty of the body? Activity, vivacity, and a certain grace shining in the body because of the infusion of its own ideas". Kuusisto thinks we people with a disability should steal this line and that we are beautiful in a Dionysian way. I am no expert on the dichotomy between Apollonan and Dianysian as discussed by Nietzsche but I do know a good bit about the history of anthropology. One of the most famous American anthropologists, Ruth Benedict, was interested in Nietzsche's work and helped develop a specialization called culture and personality--a field I have never liked. Benedict studied the Zuni culture and found "the basic contrast between the Pueblos and the other cultures of North America is the contrast that is named and described by Nietzsche in his studies of Greek tragedy". I am not so sure such a sweeping generalization can be supported by the ethnographic facts. Nor can I accept Kuusisto's generalization that people with disability are Dionysian. Sure we people with a disability have adapted, put our bodies back together in a way that is not idealized. This does not mean we accept our current form--think Chris Reeve and all those that peddle a cure for spinal cord injury. I have no doubt though that all people with a disability can relate to Dionysian experiences as we must control our rage and fury over the manner in which we are disrespected and stigmatized. Controlling these emotions turns us toward the Apollonian and controlled we must be. By controlled I mean we must channel our rage in a positive form. For me, and strongly suspect for kuusisto, that rage takes the form of writing about disability rights.

The dichotomy between Apollonian and Dionysian is thought provoking yet fails to measure up to my need for empirical evidence. I am afterall a social scientist and not a poet and do not have the luxury of making assumptions about societies or the personalities of people. This is in part why Ruth Benedict's work fell out of favor in anthropology but left a lasting impression and legacy. Her efforts to find patterns in culture to borrow the title of her most famous book was evocative. Perhaps Kuusisto is onto something here--if we people with a disability are Dionysian we surely are complex creatures and thus cannot be reduced to ableist stereotypes. We remain unique individuals with our respective quirks despite our similarities. If we are unique, and I think we are, we cannot be characterized as Apollonian or Dianysian.

I Believe

There are many wonderful writers in the field of disability studies. Foremost among them in my estimation is Stephen Kuusisto. His writing is complex and simple, funny and serious--it draws the reader in a primal way. I for one cannot stop reading his work. In short, I have a literary crush and frankly wish I could write half as well. Today I read his post "Disabilities: Forms of a Fair Kind Among Us" at Planet of the Blind (June 29) and continue to be amazed by Kuusisto's ability to make my mind come alive like a pinball machine wizard. Kuusisto maintains that disabilities are a fiction and that every day "people with disabilities must negotiate two dynamics: the literal materiality of physical systems, and (far worse) the figurative errors of hyper-semiotic normate culture--a culture addicted to a heavily marketed and entirely false idea of physical perfection". Amen, brother! To this I would add we people with a disability pay a heavy price for our failure to conform to accepted notions of physical perfection. American culture is not designed, physically or socially, for people with disabilities. We are not wanted, our presence an odious reminder of all that can wrong with the human body. This manifests itself is half hearted attempts at physical access under taken only because it is the law. And as Kuusisto writes, worse yet, are the social implications when one cannot meet minimum standards of physical perfection--minimal hear meaning the ability to walk, see, hear or think in way deemed normal. These observations led Kuusisto to write the following: read the words below very carefully:

"What do I believe? I believe that people with disabilities have a certain inner balance, a richness and clarity of their own natures. I believe that people with disabilities possess inherently beautiful forms for all form is composed of lines and planes, twists, colors, diverse arrangements. And all the better.
The interior lives of people with disabilities are harmonious with the diversity of nature itself. These things I believe. I believe the soul needs nothing added to it to be beautiful. I believe all figures of creation are beautiful. I am rooted in this. I find I cannot be moved.
What do I believe? I believe Peter Singer doesn't know enough about art. I believe that wounded warriors are only measured by the spread of our welcoming arms. I believe that one day we will look on the age of Hollywood and Milan and Madison Avenue and cluck our tongues at the slavishness of conformity and the simplicity of taste and habits that ruled these times. I'm not saying this revolution is coming tomorrow.
What do I believe? I believe in the beauty of aging. Like Ficino I believe the body is subject to time and time is beautiful. I am rooted in this. I find I cannot be moved.
What do I believe?
Art can deceive us and it can save us."

In a word, wow! I share Kuusisto's beliefs. I too believe in people with disabilities. I never see limitations when I observe one of my peers--I see human potential. I see people that have adapted, overcome baseless prejudice, endured, survived, and thrived. I see unique life forms that move and think like no other. But I am not convinced, as is Kuusisto, that art can save us. I think art must be taught and fostered. I believe that not all people are good and that for some human empathy and understanding is not possible. Some people want power and money and don't care about how they acquire it. Like all people with a disability that have put thought into their social condition, I have seen the dark side of society. Here I refer to the larger social significance of the bigotry people with a disability still encounter. This takes many forms and has profound implications beyond negative personal interactions--for instance draconian budget cuts by states from New York to California that target the most vulnerable that are the norm and widely supported in this dismal economy. Perhaps this is what Kuusisto meant when he wrote that "art can deceive us".

So what do I believe? I believe art can only save us if we force others to see its beauty. I believe people with a disability will never be equal until we force the so called normate to perceive us as equals. I believe we must demand social and architectural equality. That demand must be accepted by all. Only then will real access in every sense of the term be achieved. I believe we must help ourselves and embrace the people on the forefront of the fight for equality. ADAPT and Not Dead Yet for example must be widely acknowledged and its accomplishments lauded. They are in my estimation the special forces of the disability rights movement. Please note the obvious use of military metaphors. For us to be equal, for our art to be recognized, we must fight. I for one will not nor have I ever allowed myself to believe I am any less human than a bipedal person that towers over me as I sit in my wheelchair. To think otherwise is to accept a trip into social oblivion. Hence all people with a disability must not only demand but expect to be treated equally and with respect. This is not an easy road to traverse. One wins few friends and alienates those normates unwilling to change their preconceived ideas about disability. Like Kuusisto what I believe cannot be moved. But I would add the proviso that we must move others, force them to think and acknowledge the great contribution we people with a disability can make to society.

Monday, June 28, 2010

ADA Fantasy Land

Tom Harkin has been a long time advocate of disability rights. We need people like Harkin. He is man of power, well connected, and at a fundamental level gets disability rights. All this is good. But when I read the below I wondered if he has lost touch with reality. Below is what Harkin wrote for Ability Magazine in the June July issue. I quote the article in its entirety so reader will be able to understand my annoyance.

As we all know, this year marks the 20th anniversary of the Americans with Disabilities Act (ADA). As chief sponsor of the ADA in the Senate, I will always remember the day it was signed into law—July 26, 1990—as one of the proudest in my legislative career.
We have come a long way in the last 20 years. Before the ADA, life was very different for people with disabilities, and discrimination was both commonplace and accepted.
I still recall the hearings we conducted in both the Senate and the House, and the testimony of so many individuals with disabilities from all across America about the discrimination that they faced on a daily basis.
We heard stories of individuals who had to crawl on their hands and knees to go up a flight of stairs or to gain access to their local swimming pools. Stories of individuals who couldn’t ride on a bus because there wasn’t a lift. Stories of individuals who couldn’t go to concerts or ballgames because there was no accessible seating. Stories of individuals who could not even cross the street in their wheelchairs because there were no curb cuts. Stories of individuals who could not buy a pair of shoes or go to the movies. In short, stories of millions of Americans who were denied access to their own communities—and to the American dream.
Passage of the ADA was a bipartisan effort. As chief sponsor in the Senate, I worked very closely with people on both sides of the aisle, both in Congress and in the Administration. Senators Ted Kennedy and Bob Dole were indispensible allies. We received invaluable support from President George Herbert Walker Bush and key members of his administration, including White House counsel Boyden Gray and Attorney General Dick Thornburgh. And there were so many others—Justin Dart, advocates, other members of Congress and the Administration—whose commitment and support were instrumental in helping pass the ADA. The final vote on the ADA (91 to 6 in the Senate) sent a resounding message that this nation would no longer tolerate isolation, segregation and second-class citizenship for people with disabilities.
Over the last two decades, we have made truly amazing progress. Streets, buildings, sports arenas and transportation systems are more accessible for people with physical impairments. Information is offered in alternative formats, so that it is usable by individuals with visual or hearing difficulties. New communications and information technologies that are accessible to people with disabilities continue to be developed.
Because of the employment provisions in the ADA, many individuals with disabilities are now able to get reasonable accommodations on the job, such as assistive technology, or accessible work environments, or more flexible schedules. These reasonable accommodations are important tools in ensuring that people with disabilities have an equal opportunity in the workplace.
These changes are all around us. In fact, today they are so integrated into our daily lives that it is sometimes hard to remember how the world used to be.
Just as important, we have seen an enormous change in attitudes toward people with disabilities. Our expectation is that we will do what it takes to give individuals with disabilities not just physical access, but equal opportunity in our schools, in our workplaces, and in all areas of our economy and society.
Today we recognize that, like all people, people with disabilities have unique abilities, talents and aptitudes. And America is better, fairer and richer when we make full use of those gifts.
Every individual with a disability deserves a chance to realize the four great goals of the ADA: equal opportunity, full participation, independent living and economic self-sufficiency.
However, progress under the ADA only happens when people—people like you—understand what the law requires, and then choose to make it a priority to ensure that individuals with disabilities are included in all aspects of community life.
It’s one thing for people with disabilities to have rights on paper and a very different thing to know that they enjoy those rights in everyday practice, especially in their communities and in the workplace. We are in an ongoing fight, a never-ending struggle, to vindicate those rights.
To those of you who are on the front lines in this struggle: I thank you for the work you do every day to ensure that ADA is alive and vibrant in your communities, opening doors of opportunity and breaking down barriers of discrimination.
We have continued to advance the rights of individuals with disabilities and the four goals of the ADA with the recent passage of the ADA Amendments Act, which restored our original Congressional intent, in respect to who is covered by the ADA. We also passed the Community First Choice Option, which will increase the availability of home and community-based services for people with disabilities.
And yet, our work is not yet done. An ongoing challenge is to increase employment opportunities for individuals with disabilities. Recent surveys show that only 37 percent of individuals with disabilities are employed. These are individuals who want to work, but who are unemployed due to a variety of factors. Many individuals lack adequate support services, some employers are not providing reasonable accommodations, and others are still reluctant to hire people with disabilities.
As a consequence, an estimated 21 million people with disabilities are not employed. We must break down the barriers that prevent or discourage individuals with disabilities from working and having the opportunity for economic self-sufficiency, as we promised in the ADA. That is why I will be hosting a two-day Congressional summit in the fall that will focus on the employment of individuals with disabilities in America.
On July 26, 1990, when he signed ADA into law, President George Herbert Walker Bush spoke with great eloquence. I will never forget his final words before taking up his pen. He said, “Let the shameful wall of exclusion finally come tumbling down.”
Today, that wall is indeed falling. The ADA has opened doors, created opportunities and transformed lives. Together, we can help ensure a future of even greater inclusion, equality and opportunity for all Americans.

by Senator Tom Harkin

I don't like the Ability Magazine--it is the happy paper of disability hence Harkin's rosy view of the ADA is to be expected. Harkin is correct in much of what he writes about. Ramps, elevators, and physical access to building has improved greatly. I too laud wheelchair access and directly benefit from this form of architectural equality. Like other Americans, I can go to a baseball game and, assuming the stadium is new, have a wide choices of places to sit. I also agree closed captioning and other forms of adaptive communication has improved greatly. These physical changes in the environment are wonderful and were indeed spearheaded by the ADA. Without the ADA much of our country would not be accessible. But this access has come at a cost and we have a very long way to go before people with a disability are remotely equal. The 20th anniversary is not the time for disability rights advocates to slap themselves on the back and say "job well done" as Harkin has done. The ADA has utterly failed to change the public perception of disability nor ameliorate the social bigotry that remains the norm. People unfamiliar with disability see little blue wheelchair symbols plastered on the wall and think the problem was solved long ago. I assure you the problem is not resolved. Access, physical and social, is illusive at best. Disability rights and civil rights are not thought of as remotely similar and this represents a major failure of the ADA. I remain stunned by my social experiences that demonstrate the woeful ignorance of others with regard to disability rigths. Two examples should suffice:

Example 1: My son graduated from high-school last week. The facility was accessible in every way possible. When I arrived there was no sign about handicapped parking which on this rare occasion I was going to use. I was directed by a person directing traffic who proceeded to yell "handicapper" to the next man directing traffic. This yell was repeated again and again. Yes, I am not human I am Mr. Handicapper! After dropping off my son I looked for a spot to sit. A chair had to be removed and the usher that removed the chair treated me as though I had no brain. He spoke to me like a child. By the time the ceremony started I was ready to punch someone in the nose. Equal I was not.

Example 2: I was at a baseball game with a friend's 12 year old child. Yes, the new stadium is accessible and has a host of seats for me to choose from. Why I can even got to the bathroom. I was hyper alert with this kid as I was the responsible adult looking after her. All went well until we tried to leave via the elevator. One elevator was blocked off for VIP ticket holders. The line for the other elevator was very long and I would estimate 20 people cut in front of us. I politely complained to a nearby usher and he told me "oh, that happens all the time. You people are good at waiting so just be patient. There is nothing I can do to help you". Again, equal I am not.

Equality in the examples above is not remotely a consideration much less a concept others have accepted. Yes, I can get into buildings, attend a baseball game and graduation, but that does not mean in any way I am equal. Imagine what would have happened at my son's graduation or at the elevator if I replaced the word handicap with black. Imagine the outrage if I were segregated to a "black elevator" or the presence of a "black man" was yelled from one car attendant to another. It would have been socially unacceptable at least and for most with any sense of equality a major civil rights violation. But I am not black. I am just your average middle aged crippled dude whose presence is tolerated but humanity and equality denied. When I wonder is this going to change? Harkin's words are not going to help the present lack of social equality. Indeed, I think the little coverage the 20th anniversary of the ADA will garner in the mainstream media is going to be counter productive. We people in the disability rights movement have a long way to go until we are truly equal. And that my friend is what we should be focusing on.