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Wednesday, December 23, 2009

Weary End of the Year Thoughts

I am weary and sad. No doubt this is tied to the holiday season and inevitable end of year retrospection. Another variable is the supposed good cheer one and all are feeling. For me, a person with a disability, strangers seem to suddenly want to help me or are quick with what they think are positive or cheerful comments. In the past week I have "complimented" multiple times about how I get in and out of my car. For instance I have been told it is "amazing the way you get in and out and even drive yourself". Or yesterday when grocery shopping a woman told me I was "an inspiration for the way I push my grocery cart around". I would like to think these ignorant comments are well intended but their increased frequency during the holiday season just pisses me off. I consider this a form of social harassment--a way of reinforcing the superiority of those that are bipedal. Such inane comments all share one thing in common: the assumption that people with a disability are inferior. The focus is never on what can be done but rather on what cannot be done. Disability is a personal and collective tragedy that prevents a person from doing the ordinary. This line of reasoning makes me furious.

I use a wheelchair and cannot walk. I don't think using a wheelchair is a big deal or significant loss in terms of mobility. My means of navigating the world and the social environment is different from the norm. Few people that navigate the world on two feet think this way. Using a wheelchair carries stigma. This was the case thirty years ago when I started using a wheelchair and not much has changed. The worst part of the stigma associated with my use of a wheelchair is the assumption my life is inferior. The routine is not possible and when I have the audacity to be ordinary I am lauded as amazing. Something amazing is going on but it has nothing to do with getting my crippled ass in and out of my car or pushing a shopping cart around the grocery store. What amazes me is how ignorant people are. Surely in the last thirty years society, that is me, you and your neighbors, should have concluded using a wheelchair is a different means of getting around the world we live in. Using a wheelchair should signify nothing socially. But this idea is a pipe dream. I don't see the stigma attached to using a wheelchair changing in my lifetime. For the longest time I thought my presence as well as the presence of others that use a wheelchair was enough to generate change. This was wishful thinking and wrong in retrospect. Now I think all people with a disability that yearn for equality must not simply be present but need to assert themselves. This is easier said than done. I am polite to a fault and do not like confrontations. And during the holiday season no one likes to be Scrooge like (though my son thinks I am perfect for this part). Combine this with the false belief that people with a disability are bitter or angry because they have a disability and I often find myself in a Catch 22 situation. How does one respond when a mother of two thinks I am amazing because I can push a shopping cart? Getting angry in the face of such ignorance is not helpful. An explanation that such a comment is inappropriate is too time consuming. So how do I cope? I scowl a lot and do my best to appear unapproachable. I avoid eye contact with adults, I am not open with strangers, I never answer direct questions, and am wary at all times. While this may protect me from some of the worst social abuses it does not exactly help my social life or foster change.

I wish I had the solution that would foster revolutionary change for all people with a disability. The bias we people with a disability encounter is overwhelming. It is the one underlying theme of my life as an adult. That is the assumption that I am less of a human being, that I have less rights, lesser expectations, hopes, dreams, and ambitions. I have consistently rejected this but it has not been easy. So during this holiday season I mourn for a simpler time that I am not sure ever existed. I wish I was shopping for the coolest Lego set for my son or making a ginger bread house with him. I wish he was once again sitting on my lap as a toddler telling me "Go, Daddy Go". These memories are a mix of fantasy and reality. The reality is my son was the cutest little boy and in spite of inherent human flaws we all posses a fine young man with a bright future. There is another reality though--having my ability to parent repeatedly questioned by strangers, doctors, teachers, and all those that saw a wheelchair and not the human being sitting in it. These unpleasant thoughts have been on my mind as I have been following via newspaper articles the experiences of Kaney O'Neill. O'Neill is a 31 year old mother of one and quadriplegic. Her child's father, David Trais, a self-employed Chicago attorney, has sued Ms. O'Neill for full custody of their son alleging that she is "not a fit and proper person" to care for their son. In Trais 'opinion her disability "greatly limits her ability to care for the minor or even wake up if the minor is distressed". Since a landmark 1979 California Supreme Court Decision a parent's disability cannot be used against them in custody hearings. The court ruled that "the essence of parenting is not to be found in the harried rounds of daily car pooling but rather in the ethical, emotional, and intellectual guidance the parents give the child throughout his formative years." Amen! But in the legal system the idea that a parent with a disability is equal to a parent without a disability is pure fiction. Bigotry abounds against parents with a disability and the amorphous belief that "the best interests of the child" always comes first. Those best interests translates into parents without a disability getting custody. This sentiment was perfectly expressed by Howard LeVine, a lawyer with 40 years of divorce and custody experience. LeVine was quoted in the Chicago Tribune as stating that Trais' concerns are well founded. LeVine stated "Certainly I sympathize with the mom but assuming both parties are equal in other respects isn't the child obviously better off with the father? What's the effect on the child, feeling sorry for the mother and becoming the parent?" While I find LeVine's comments offensive I do not think they are unusual. The focus is on what a person, in this case a mother with a disability, cannot do. I wish O'Neill well in her custody battle and can answer one of Mr. LeVine's questions: "What's the effect of on the child?" If my son is any indication, he has learned much from me as a parent with a disability. He understands the impact bigotry can have on a person from experience. He understands civil rights extend beyond the color of one's skin and include disability rights. He understands injustice and the difference between what the law states and reality. He has a nuanced appreciation for the struggle of all minority groups. He does not think of me as being different. I am simply his father, a man that love him very much. So, despite my grumpiness I know I am a lucky man. I live in a nice home, drive good car, have adequate employment, my son attends a good school and is looking forward to going to college. I have no right to be so grumpy and yet remain extremely sad.