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.