Yesterday I had an anniversary. Thirty six years ago I remember standing for the last time. I recall my legs were quivering and I was in great pain. I recall thinking this is it. No way I am ever going to be able to do this again. In college this memory bothered me because I was struggling with my newly stigmatized identity. I did not like being the crippled guy. I hated the way people treated me. I despised the way some looked at me--the pity filled eyes made me seethe with rage. Fast forward thirty six years and I am remain a spectacle. My presence is often not wanted. Few equate disability rights with civil rights and as a result I remain angry. I am not angry about wheelchair use and paralysis; I quickly came to terms with that long ago--as in decades ago. I am angry society is changing as a glacial pace. I am angry the physical world presents one needless obstacle after another. I shake my head in wonder. I value my life. Why cannot others see me for who I am. An ordinary man who happens to be paralyzed.
So here I sit thirty six years later and counting. Damn, how did I get so old? My students are so young I feel a fatherly urge to shepherd and guide them toward a bright future. The oddest part though is that I am aging into normalcy. My presence as a middle aged man who is paralyzed is not perceived to be jarring. Most assume I was paralyzed later in life. I am often asked "so how long after your son was born were you paralyzed?" Of course the assumption here is that paralyzed men cannot father a child. This is very wrong and my son is living proof of this fact. I honestly do not know what to make of being middle aged and perceived as somewhat normal. I dislike being alone and loneliness in recent months has taken a very heavy toll on me. Eventually I will come to terms with this but as of today there is a huge void in my life. Sweet sorrow and salty tears flow freely. Maybe I am a human being after all.
7 comments:
Sometimes the intellect, the mind -- yours, mine -- OK, just yours and mind ;) makes mischief and we mistakes its utterances for the truth. Actually, this happens most of the time. Here you brand yourself with a word such as "spectacle" and then commit the crime of believing it. I call bullshit on your mind. This is not a personal attack because THE mind constantly shits on us. It's part of the human condition, our negativity bias. Neuroscience demonstrates that it takes 5 good experiences to counteract 1 bad one. It's part of our what appears to be our hardwiring, though neuroscience points toward ways of changing that. (I'll save that for another time.)
Bill, you are not a "spectacle." Not even close. You, me, and others with visible disabilities are not the norm, but that doesn't render us spectacles.
It's helpful to put some distance and get some perspective on thoughts and the power we bestow upon them.
As a "thought" exercise, say these sentences to yourself in succession and notice the difference:
"I'm a spectacle."
“I’m having the thought that I'm a spectacle.”
“I notice I’m having the thought that I am a spectacle."
Rinse and repeat for any of the self-downing mind droppings that creep up throughout the day.
Fear is the guiding principle in this world and the disabled are obvious objects upon which people project some of their deeper fears. Still, your presence *is* wanted and *is* valued. And not just from your avid blog followers.
Stephen
Stephen, As you well know, social interaction when a disability is obvious is skewed. Goffman wrote about this--the primal scene of sociology. All social interactions carry added significance. Nothing is simple. One does not merely get a cup of coffee. In the head of the server is can the crippled guy handle the cup on his own. Do I need to help? Should I offer help? Can her fork over the money? Lots of mental gymnastics take place that can and do impede routine social interaction. The point here is social exchanges from the most mundane to the complex are never straight forward. This is what I mean by spectacle. I can never be anonymous. I can never blend into the wood work. I can never just be.
Although you seeing yourself a certain way may be a part of you any other feature, but it will never define you. As the comment stated above, you are not a specticle--but a doctor of anthropolgy, a professor, and a mentor. Those are the things that define us, nothing else.
part of you like any other feature*
Lisa. Disability does not define me but it is part of my identity in very positive way. I am in fact quite proud of my body. For a paralyzed middle aged man I am in great shape. The issue is how do others perceive me? This is where the spectacle comes into play. I really desire to be anonymous. Ain't never gonna happrn.
Bill, Not to be pedantic, but I don't think you desire to be anonymous but, rather, inconspicuous. Regardless, it is the psychological -- individual differences -- component to your observations and remarks that I was addressing. I realize that we frequently have to perform contortions ("mental gymnastics") in what are otherwise ordinary social interactions, but hey, after 30 years for me (and 36 years for you), I've grown quite accustomed to this and am rarely rattled by it.
Stephen, Like you I am accustom to the contortions or mental gymnastics we routinely perform. I am not rattled by it as I once was long ago. But it does bother me. It is not me I worry about but others. Others who do not have the resources or support system and instead of asserting their humanity become shut in and lead a compromised and socially isolated life.
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