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.