Disabled Bodies

Two days ago I read an interesting post at Crip Confessions. The post was titled "But Won't You be Ashamed? or Cripping Pasties". Link: http://cripconfessions.com/archives/2339  A little background is needed. The author is going to the 2016 AVN Expo and Awards in Las Vegas. Essentially she is attending the "Oscars of Porn".  What struck me as thought provoking was the following paragraph:  

Much talk of clothes and the like have provoked side conversations coming up, including one that included the title query. I have been very open about my plan to wear pasties and frolic. I explained this to an acquaintance, and one of their first questions to me was “Won’t you be ashamed?” They were baffled I would have the audacity to wear pasties generally, and especially among porn stars – who include those with medically sculpted bodies toward social beauty, rather than away like my medically enhanced body.

I will leave aside the issue of wearing pasties to make a more general point about disabled bodies. It is hard to appreciate the unique beauty associated with disabled bodies. To be more specific, it is hard for me to appreciate my body. Nearly 40 years of paralysis has taken a toll on my body and aging has not helped. I have surgical scars on my back; long railroad tracks that go from the top of my neck to the crack of my bottom.  I have another surgical scar on my hip. I have an ugly scar on my hip where I had a significant wound that nearly took my life. My left hip is dislocated and is a few inches shorter than my right leg. I have a sweeping and profound scoliosis. My fused spine has started to cork screw to the right. I suspect my hearing is deteriorating. I wear glasses and am profoundly near sighted. My body has been profoundly altered by time, surgery, and the natural aging process. Disability is a cruel in its glacial ability to change the human form. I know why people stare at me. Most people with an atypical body will understand the implication of those stares. Back to Crip Confessions:

With OI, I have a protruding sternum (which is its own sexual aid, but that’s a story for another day) in between my asymmetrical breasts that are, as one OI stated, east west boobs. Instead of pointing forward, they point to the sides. I’m fat. I’m compact in the core, and have relatively small extremities in comparison to my core. I have a short neck. My hair is in a middle stage of growing out, so a bit meh. And I’m not awesome with make-up. I use a wheelchair and will have a weirdo little service dog in tow. I’m likely missing other aspects of my body that they might be thinking; regardless the point is I’m not a typical person or a body-beautiful human.

I am assume OI is Osteogenesis Imperfecta. The disablement here is not relevant. The important thing I share with the writer is the fact I love my body. She truly loves her body. I truly love my body. This should be the mantra of all people with a disability. Again, back to Crip Confessions:

I love my body, even when it’s in pain or falling apart at times. Surely, it’s not every day that I see beauty but I damn sure try to shed the weight of internalized ableism. I deserve embracing my body, after too many years covering up myself in baggy clothes. I have spent so many years beating myself up about my body not conforming to standards of typicality.

Internalized ableism is deeply ingrained in our collective conscious. I know this because like all people I have internalized ableism. My ableist bias comes out when I least expect it. I look across campus and see a guy traversing campus in a wheelchair and silently think "that guy is screwed". My next thought is an amused sort of internal mocking. Once in a great while I wake up and see my wheelchair and think "what the hell is a wheelchair doing next to my bed". I then shake my head and think where did that come from. When these sort of ideas spring to the fore I think of Robert F. Murphy and his book the Body Silent. I know the books dedication by heart:

This book is dedicated
to all those that cannot walk--
and instead try to fly

My paralyzed body has empowered me to lead a very different sort of life. I have tried very hard to fly. My metaphorical effort to fly has hit many a speed bump. I have experienced things that no typical bipedal person could understand. I have flown over ableist bias with grace and dignity. I have also been hit by the same bias and been thoroughly beaten. Through good times and bad my body has endured. It has served me well. I would love to think my body has been medically enhanced for the alternative is decidedly unhealthy. Negative body imagery is what far too many women endure. In theory I have a healthy perception of my body. I understand I am different. I adapted to paralysis long ago. It is just part of life. Despite the love I have for my body I have a confession to make. I do not like to look at my body. You will not find a mirror on the wall in my home. My image reminds me of being the other, a fact when I am in the comfort of my own home I choose to ignore.

Teasing and Joking about Ableism

My son has spent the last week with me. It has been, let us say, an adjustment. I am not sure which of us has adjusted more or less. Truth be told, he is an easy person to live with. I cannot say the same about myself. The good news is he has found a nice place to live close to Syracuse campus at an affordable price. He is confident he can find a job and has had an interview already. His master plan is fluid and ill defined. Ah, the life of an unattached 23 year old man with no ties or debt. I have truly enjoyed the last seven days despite the fact my son has tripled my food bill. In return I have exploited him. He carries groceries and the laundry. He fills my gas tank. He gets my wheelchair in and out of the car. He gives me a push up the driveway and other steep hills. He walks my dog Kate. He reaches stuff that is hard for me to reach. My gosh being bipedal is convenient. He saves me time, oceans of time.

Yesterday as we did typical errands and it dawned on me that I have not had a single skewed social interaction. Over a week has passed and not once have I been demeaned. No stranger has harassed me at the laundromat. No one has prayed over me. No stranger has asked rude or intrusive questions. No one has offered to "help" me do the ordinary. Essentially there is no more "show" to use the words Steve Kuusisto used today. When one has a visible disability or atypical body you are the other. You are different and your existence draws attention and stares. The show cannot be avoided when Kuusisto or I leave the safety of our homes. He wrote:

When I think more deeply about this I think in terms of history. I belong to the first generation of public disabled. We’re not in the institutions. The laws of the land welcome us. Of course I’ll be stared at. 100 years from now, when everyone will have wild looking quasi-electronic rubberized appendages attached to their bodies this era will seem like ancient history. I hope for that. Link: http://stephenkuusisto.com/2016/01/17/more-about-being-blind-in-the-seven-eleven/

The reason for this is simple: I have been with my typical bipedal son. When accompanied by a well over 6ft tall young man I blend in. Remarkable. It appears as though my existence is socially acceptable if I am not alone. Perhaps others assume my son is my aide? Or is it my new look? No more pony tail. This bad cripple has a buzz cut and bushy snow white beard. Nothing else aside from the presence of my son has changed.  When I woke up this morning I was angry in large part because I feel asleep thinking of how different my social interactions are when I am accompanied by my son. Twenty-five years post ADA the presence of a lone crippled man remains socially unacceptable. This is a depressing and illustrates  that the social stigma associated with wheelchair use clings to this day.

To adapt to life with my son we have spent much time joking around. My humor of choice is sarcasm and teasing. This week I have enjoyed teasing my son. We have spoken a good deal about ableism. As a boy he told the word ableism was useless. He told me no one kew what the word meant and the people who did understand it already grasped the importance of disability rights. Fast forward a decade and he now thinks the word has a place. Apparently he read my post about the Mighty and told me the Mighty is ableism on steroids. He asked me "who actually reads this crap and believes the sappy drivel they post". Oddly, I tried to defend the Mighty. I spoke about social isolation of people with a disability. I told him to imagine a parent who has a kid with a profound disability and all the typical things that will never do. Think about the parent who knows his or her child will need a lifetime of care and never be physically independent. He thought a bit and told me those parents need to think more. He speculated that any nuanced discussion given the current political climate was utterly absent. Dad, he said, "we live in a time when Donald Trump is a viable  presidential candidate and the truth, substance, is not relevant. The facts are ignored and flat out falsehoods are freely spewed. Trump wants to build a wall at our borders and ban all Muslims. This is bad. I mean it is really bad political and social rhetoric".

Back to ableism and sarcasm. I have been joking with my son about being bipedal. I live in a home. that is not bipedal friendly. I have no couch. My home is stark, it lacks furniture and nothing hangs on the wall. I have a desk where I eat and work. I have a bed. I have a small table next to my bed. I have two chairs. I keep them folded up in a closet. They are Church chairs. One must sit up straight. There is no slouching in my home. My abode is very Calvinist. This is purposeful. I want my bipedal friends to be uncomfortable. Welcome to my world. In the land of disability I rule my tiny domain. My domain is designed for those that use a wheelchair. Screw the bipeds! Of course this does not help my son. To defuse his frustration I have been teasing him about how inspiring he is. As he gets out of the car I stare in awe. "Tom, you are an inspiration! I have never seen a bipedal  man swing his feet out of the car and stand up so easily". I joke "Tom, life must be so hard for you. Bipeds are up and down all day long. You sit and stand. That must be so exhausting. Your legs are so strong. I could never live as a biped. It is just too difficult". When we are walking I tell him "I feel bad for you. Going down hills is so much fun. You will never appreciate the joy I feel as I gain speed. Your life must be hard and miserable". When my son studs his toe I laugh. I tell him "Yet another advantage of using a wheelchair". When shopping and he holds a basket I remark "I bet your hands get tired very fast. Your arms are not as strong as mine." 

The jokes above in the proper context are quite funny. They also serve as a pressure relief valve. There is a lot of testosterone in my little home. As many people my age know, a young person living at home post college graduation is awkward. I consider myself and my son lucky. Without debt, he has a significant advantage over many men and women his age. He has also mastered the art of deadens jobs. He is a superb dish washer. He works at warp speed. He has knife skills. When I ask him to cut anything he does it well and at breath taking speed. He has the stitch scars to prove he has worked in commercial kitchens. What his future holds is unknown. What I do know is that I will cherish this time and by extension his mere normalizing presence. I can actually go out the door without worry about being verbally assaulted. Bipeds have no idea how lucky and dominate they are. But not in my home.