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Monday, November 25, 2013

Wise Words When One Enters the World of Disability

Fear is a primal emotion. Many people fear disability. We crippled people as all know are the only minority group one can join against our will. All humans are one physical accident away from being crippled. Examples, tragic examples, abound. The paralyzed bride. The paralyzed architect who dedicates his life to walking again via the exoskeleton after a crane falls on him. The elderly who have a stroke. People with diabetes that lose a limb. People who experience an industrial accident and are blinded. The human body is frail. Everyone knows this. Adults and children know they can be hurt. The land of disability is one mishap away from reality. There is good reason to be fearful of disability. I see this enacted in a myriad of ways. Stares. Always the stares. Outright bigotry, not common place, but it exists. "I would rather be dead than paralyzed". I have heard this many times. Subtle thoughtless reactions to my presence. Mothers in the supermarket grab their kids hand and whisper "Watch out for that man". Thanks, a lesson has been learned. Fear all who use a wheelchair.

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:
Ableism, like homophobia, is a thing. It pervades our entire society. The Americans With Disabilities Act is an unreliable farce, and those of us who are disabled — one in five — must battle with employers and landlords, doctors and health insurance companies to get what we need. We have to be activists whether we want to be or not, and yet all the while we must do our best to hide who we really are from those on whom we depend for survival. But if one in five of us is disabled, that means everyone knows someone with a disability. Every family has one of us, every workplace, every school, every friend. We are everywhere. But is disability addressed in any community — LGBT or any other — or are we shunted aside as much in 2013 as we were centuries ago, kept out of institutions by recent laws, but not by attitudes?
One in five LGBT people has a disability. Do we even think about it as a community, other than to pay lip service to the term "ableism"? I have a friend on Twitter — a trans woman with cerebral palsy — who I would never know was disabled from her exchanges. But I know, because I’ve experienced this myself, that when she goes out in her wheelchair, she’s treated as if she’s not really there. Her smart, witty, articulate self is obliterated by people seeing only the disability. People speak to the person pushing your chair, as if you’ve been rendered mute. I haven’t been rendered mute. Ableism is the last and perhaps most formidable ism we have to address in our society. Our fear, as a culture, of the sick and disabled is not much evolved since the Middle Ages. We no longer warehouse the disabled, but we still want to. We still want to keep the different bodies out of our line of vision, because disability feels foreign to us, and frightening — perhaps because we know it could be us next. So this is me coming out crip. I never thought I’d be disabled until I was. The issues surrounding disability are huge and touch all of us, so none of us can afford to ignore them.
All of us will be touched by disability. None are unaffected. I wonder when this human rights issue will hit the front page. I wonder when will disability based activism be valued. I wonder when will disability studies scholars start advocating for those they study and dare I saw exploit.  Of one thing I am sure. I will never see or experience the equality that has eluded me since I last stood up as an 18 year old man. Grim thoughts on a lovely though cold day. 


susa said...

I loved your article -it was brutally honest. I know all about trying to educate others. Teachers mainly.My daughter has Down syndrome. We get the "stares"also. She is almost 11, loves to interact with other kids, however, A lot of times when we are at the pool or park, the kids she approaches to play run away or insult her. Sad...She does play with the younger kids who don't care that she looks different.

John Kelly said...

Education! What a joke. But I think there's a lot more to this relationship than simple fear. Hatred precedes fear. People know what it means to be disabled, it means a catastrophic loss of all status, to a desolate place perhaps worse than death.

Unknown said...

There is no greater wealth in this world than peace of mind.

william Peace said...

John, Yes there is hatred too. Fear and hate are opposite side of same coin. Education can take social change only so far. We need a social revolution. We need to take to the streets and cause civil unrest. Here is where ADAPT has failed to, well, adapt. Old tactics that worked in the past no longer work. We need to look at an organization such as ACT UP that sprung into existence, caused grey change and then sadly disappeared. Maybe online blunt force disobedience? Take down the websites of let's say Autism Speaks? Target businesses hostile to inclusion?

Mardra said...

"We don't like what we don't understand. In fact, it scares us." Angry Mob song lyrics come to my mind.
Right now Rudolf the Red Nosed Raindeer is on, even as a child I disliked this show *so much* Why does Rudolf have to prove his worth before anyone, even Santa, decides he's alright. Deserving of even the same rights as all the other raindeer?
OY It's an uphill battle. Every day.

william Peace said...

Most classics for kids are pretty scary when analyzed. I try to ignore or not think about such analyses.