None of the above is new ground. Social scientists have observed and analyzed why people fear the crippled for decades. I have experienced prolonged social isolation that is the companion of fear. No one wants to be around socially polluted people and polluted I am. My presence creates a symbolic stink. A spectacle can and often does follow me as I navigate a hostile world. I enter a posh New Haven, CT hotel through a locked lift next to the steps. I enter the hotel via the baggage room. People stop and stare. I go to a minor league hockey game with my son. We observe a group of people with obvious cognitive disabilities. By the time the game is five minutes old every person seating next to these men and women have moved to different seats. This group, tightly knit, is surrounded by a sea of empty seats. On the drive home my son falls asleep and I cry. Did those that moved know they were cruel bigots?
The fear of disability is not as prevalent in my life as it once was. I am aging into normalcy. A white middle aged man using a wheelchair is not as much a social affront as an 18 yearly male or female using a wheelchair. People assume I had a "regular" life and experienced a tragic accident as a mature adult. This misconception makes the ignorant feel better. Hence they gasp when and if they learn the truth. I have been paralyzed more than 35 years. Oh my God! Tragedy! Horror! And silently fear. Such people slink away from me unable to cope with my reality. What people do not get is just how oppressive being crippled is. Eva Kittay calls the social work and required social navigation skills needed to lead an ordinary life emotional labor. People like me who use a wheelchair are always trying to sooth the disruption our presence causes. Sure I will go in the back door. Of course I do not mind using a wheelchair lift filled with trash. No accessible bathroom? No problem. I will dehydrate myself. When I fly I will be the first person on and last off adding a great deal of time to my trip. I am expected not to mind. I am expected to put on a happy face. Those charged to assist me on and off the plane do not speak english nor do they know what to do. No problem. My job is to educate them. Education. It is always about education. I have been educating people for a long time. The lessons are not working. I am weary. Over the last few months I have come to the conclusion I will never be equal to others. Bipedal typical others. My presence will always be a disruption. My existence a spectacle. My job from now until I die will involve heavy lifting. The emotional labor is overwhelming. It is in fact deeply depressing. I yearn to be normal. To go out the door like any other person and not feel as though the weight of the world is on my shoulders. I am not a person. I am the representation of all crippled people who use a wheelchair. If I am tired and cranky, have a negative experience with a typical person, the lesson learned is all people like me are mad at the world. Sorry but no. I am not mad at anyone. I am tired. I would like to be treated with a modicum of respect. I would hope people, 23 years after the ADA was passed into law, considered equal access a civil right. This is not the case. I have no reason to believe the required leap in logic to a civil rights thought process will ever take place.
The mere presence of people with disabilities is a social problem that defies a solution. It is not a shock to me but it is to others when they enter into the world of disability. Victoria Brownworth, an award winning write and journalist recently wrote about her entry into the world of disability in the Advocate. Link: http://www.advocate.com/commentary/coming-out/2013/10/11/coming-out-asdisabled