I now live in a huge apartment with two female roommates within walking distance to downtown Syracuse. The apartment does not have a view. This apartment is about light and indoor space. The interior has large windows well over six feet and the ceilings must be at least 15 feet high. This is classic loft living I call industrial chic. The building was once an iron factory and the entire area has been gentrified. I am content in my new digs. I am thoroughly enjoying urban car free life. I walk everywhere and Kate is always by my side. This move is proving to be a great transition for man and dog. The transition has been smooth in terms of logistics but Saturday was a rough day. My roommates moved in and had an army of help. The house was filled with the chaos associated with moving. Suddenly I was surrounded by bipedal people and more stuff than I could have ever imagined. I freaked out. There I was surrounded by people I know and respect and I felt very much alone. This sparked complex emotions and one sentiment became prominent--alienation. When I emotionally shut down as I did on Saturday I think back to the early days of my paralysis and my subsequent intellectual awakening at Columbia University. Once paralyzed, I immediately knew my social stature was significantly diminished. I had acquired a stigmatized identity. I may have been the same human being post paralysis but the way I was treated radically changed. It did not take long to learn that blatant disability based bigotry was going to be a daily part of my life. Today, we call what I experienced ableism. That word did not exist in 1978. Disability rights was in the incipient stages of development. Laws were being passed that protected my civil rights but they had minimal impact on my day to day life. I grew increasingly alienated from bipedal people. I was wary of typical others. I struggled greatly as I was continually shocked by the prejudice I encountered. I spent much of my time befuddled and confused. In those early years I often retreated to my door room, smoked pot and listened to the Sex Pistols and all sorts of punk music. The nihilism of God Save the Queen appealed greatly and the line "there's no future, no future, no future for you" resonated deeply. Two things saved me from a very dark future: first, Robert F. Murphy wrote the Body Silent and encouraged me every step of the way in graduate school. Second, I was exposed to Marxian theory--especially Marx's theory of alienation. The BBC has in a wonderfully British way explained alienation as follows in the video below:
My trip down memory lane and effort to deal with an intense feeling of alienation was helped by Stephen Kuusisto. At his consistently thought provoking blog, Planet of the Blind, today Kuusisto wrote about his trip to the west coast via Delta airlines. As any person with a disability can attest, the airline industry is capitalism's leader in disability based bias. All airlines are openly hostile to people with a disability. I cannot board a plane as a wheelchair user without being patted down by TSA agents. In short, I am frisked every time I fly. The so called pat down can range from gross disinterest and a cursory check of my body to an aggressive maximum security style effort to find whatever the TSA agent happens to be concerned about at that second in time. There is no support to be found among my fellow downtrodden travelers. Indeed, passengers are usually as miserable and bigoted as airline employees. Read what Kuusisto wrote here: https://stephenkuusisto.com/2016/06/27/disability-airplanes-and-my-life-as-an-object/ In short two passengers categorically refused to sit next to him because he had his superbly well trained guide dog with him. Two passengers made a giant stink about being seated next to him and demanded to be seated elsewhere. Air line attendants were forced to handle the situation and Kuusisto wisely remained quiet. What he experienced was, to use his words, "raw prejudice".
When I read Kuusisto's post I was instantly transported back to the first day I went to college. My brother Jim helped me move in. He had just graduated from Hofstra University and advised me to arrive early. He told me to get the bed near the window. By the time my roommate showed up all my stuff was packed up and we were just hanging out. In walks in my roommate and his father. There was a weird pause and my roommate said "I am not rooming with a cripple". With that statement, he turned around and walked out. Just like the bigots Kuusisto encountered on the airplane, my roommate's bigotry was managed. Imagine a different scenario. My roommate walked into a dorm room and stated "I will not room with a nigger". Imagine a person boarding a plane and stating the same thing. "I will not sit next to a nigger". The reaction would be radically different. Outrage would be quickly expressed. Prompt and fierce rejection of such bigotry would be the expected response. Yet when disability based prejudice, raw prejudice, exists the response is muted. The problem is managed. Somehow disability based prejudice is always different. Ableism is frowned upon but not addressed directly nor swiftly. Disability based bigotry is rarely if ever recognized for what it is--a violation of a person's human rights. My human rights were violated the day I arrived on campus in 1978. Kuusisto's human rights were violated last week.
In retrospect, I realize now just how deeply I have been scarred by 38 years of disability based prejudice. On Saturday I was in a lovely apartment with friends and my son and yet the chaos of the move and a group of bipeds made me shrink away. I retreated into a self protective shell, accustom and expecting to be hurt, demeaned and belittled. I will struggle with my reaction, clearly this was a bad day. The bad day was further enhanced by a very bad fall out of my wheelchair in the heat of summer. I have found solace however. I know to the marrow of my bones I am not alone. Millions of wheelchair users are out there everyday fighting the good fight. Kuusisto is out there and part of a guide dog team. Deaf people are out their with their own vibrant language and culture. The disability itself, whether physical or cognitive, does not matter. Disability based prejudice shares the same hateful roots. Indeed, prejudice, that is the study of prejudice, is littered with assumptions, generalizations, and cliches. It is for this reason that Elisabeth Young-Bruehl's book, The Anatomy of Prejudice, is on the top of my reading list. Young-Bruehl examines antisemitism, racism, sexism, and homophobia in an effort to expose their distinct fulness and similarities. It is my hope if ableism can be directly connected to other forms of prejudice real social progress can be made. I must dream of a better future for those who follow me in adapting to disability. I have taken, and will continue to be subjected to raw prejudice and do so in the hope that those cripples that follow do not experience what Kuusisto and I and so many others have endured. I wear my scars proudly for others.
