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Sunday, April 24, 2016

Spring Has My Bones Aching

I have been experiencing a philosophical throbbing ache in the marrow of my bones in recent weeks. The ache is painful. The ache is surely not depression that has gripped me off and on in recent years. This ache is different. It is a low level ache akin to a non essential app on a cell phone that drains the battery. I am in the words of James Taylor classic song "Running on Empty." I am running on empty because I live in an ableist world. Ableists abound. Bipedal people sure do love their feel good stories. Unbeknownst to the vast majority of people who insist  on "helping" me is that ableism is the bane of my existence. Ableists can see only one thing--what I cannot do. I am not truly human but a living breathing stereotype of a life gone horribly wrong. My existence is tragic. Oh my, you are paralyzed--I am ever so sorry. "What can I do to help you?" I never reply with what I am actually thinking. When I hear "how can I help you" uttered by a stranger my first thought is "fuck off asshole". Of course I never say this to the well meaning person who is ever so eager to help me. I do not say "fuck off" because I do not want to be physically or verbally assaulted. I don't want my wheelchair ripped out of my hands as I put it inside my car. I do not want to have a door slammed in face.  In the words of Stephen Kuusisto:

The ableist isn't in the mood to hear you. He's tired of your complaining. He was trying to do something good for your kind. He was reminding TV reviewers that we have to save the poor cripples. The ableist doesn't want you to mess up his story with the facts. He remembers the good old days when the lights would dim in America's theaters and there'd be an advertisement for the March of Dimes and there were poster children and the collection of cans came around the audience row by row. 

To repeat: the ableist isn't in the mood to hear you. Ableists do not listen. They never have. Ableists did not listen to Ed Roberts when he spoke about cripple power. Ableists did not listen to Paul Longmore when he burned his book. Ableists did not listen to Mary Johnson when she critiqued Clint Eastwood and Christopher Reeve. Ableists will surely not be reading these words. Ableists do not listen because they have no interest in the lives of those who have a disability. When we cripples speak the truth, when we cripples push back it destroys the well worn stereotypes associated with disability. We cripples want what typical people want--a safe and accessible place to live, a job, and access to mass transportation so we can get to work and navigate the world. This is too much. The ableist who runs across the street to help me is in fact the enemy.  This hearty soul is a good person and provider. This ableist might be a member of the church and goes to mass every Sunday. The ableist might be a pillar of the community. The ableist could be the mayor of a small town. Few if any ableists wake up in the morning and think I will discriminate against the handicapped today. Ableism, like the ache in my bones, is far more subtle.  The ableist wants to kill me out of the goodness of their collective souls. Try and access health care and one will receive a litany of apologies. Sorry the examination table is not accessible. Sorry we have no accessible patient rooms. Sorry we cannot lift you onto the Xray table. Sorry the accessible entrance is locked. Sorry I have no idea where an accessible lab is so you can complete blood work. Sorry during the procedure your wheelchair must be left in the hallway unattended. My you have suffered so much in your life perhaps you might consider foregoing life sustaining antibiotic treatment. The ableist loves me. The ableist does not want me to suffer.

In many ways I am the model of success in the estimation of ableists. I was paralyzed, worked hard to be "rehabilitated",  and have over achieved. I have "overcome" my disability in spectacular fashion with my Ivy League PhD and series of academic jobs. I have shamed all those with a disability that are lazy slackers. I am one of them--typical in every way except one--I am paralyzed. However, I become a problem again when I open my mouth. Ableists do not like what I have to say. Oh the ableist will cluck about and think disability pride is cool. The ableist will reach into his pocket and give a donation to some kick starter fund or a adaptive sport program. Trouble arises when I start speaking about the gain associated with disability. You see my value system is radically different. I see the folly of our beloved myths about autonomy and self determination. In the words of Paul Longmore:

deaf and disabled people have been uncovering or formulating sets of alternative values derived from within the Deaf and disabled experiences... these have been collective rather than personal efforts. They involve not so much the statement of personal philosophies of life as the assertion of group perspectives and values. This is a process of Deaf cultural elaboration and of disabled culture building. For example, some people with physical disabilities have been affirming the validity of values drawn from their own experience. Those values are markedly different from, and even opposed to, non disabled majority values. They declare that they pride not self-sufficiency but self-determination, not independence but interdependence, not physical autonomy but human community. This values formation takes disability as the starting point. It uses the disability experience as the source of values and norms. 

In short, Longmore asserts that a cultural divide exists between those with and without a disability. To me the tragedy is those without a disability either refuse to acknowledge this or reject the idea entirely. The more strident one becomes the easier it is to dismiss the scholar or writer with a disability as unbalanced, a person that embraces a screed, is illogical and driven by emotion. Thus my words fall on deaf ears (pun intended) and are quickly dismissed. In contrast, those with a disability that conform to existing stereotypes associated with disability are beloved. The best and most controversial figure in this regard would be Christopher Reeve. His 1996 speech at the Democratic National Convention moved those in attendance to tears. All news outlets gushed about Reeve's speech as one of the finest statements about the human spirit. While Reeve was being lauded, Harriett Mcbride Johnson was on the convention hall worried about her personal safety and horrified by the reaction to Reeve's speech. In her memoir, Too Late to Die Young, she brilliantly describes what took place and wrote Reeve was akin to a ventriloquists dummy. Those that remember the convention recall just one thing--Reeve's prime time made for TV speech. Justin Dart, a well connected and life-long Republican who held high office during the Reagan era, spoke the next day about the disability rights and the ADA . Dart spoke in the middle of the afternoon and precious few paid any attention.

In recent years the only person with a disability that has had widely acknowledged success conveying a disability rights perspective was Stella Young. In 2014 Young gave a TED Talk "I'm Not Your Inspiration, Thank You very much". Her talk was good but it did not resonate for me. Young was a comedian and journalist. Through humor she did a wonderful job of undermining inspiration porn and stereotypes associated with disability. I am much rougher around the edges. I speak my mind and sometimes do so with force. I am also a story teller as are most academics. It is my hope that if enough of we people with a disability tell our stories the hordes of bipedal that surround us will listen some day. I know we people with a disability have come a long way. No longer are we forced into institutions where our lives were carefully hidden away. That was a giant leap forward. We have also forced people to think about the social versus medical model of disability. Yet much work remains to be done. Disability rights and civil rights are somehow perceived to be different. The ADA is widely disparaged and is often deemed an unfunded Federal mandate. In response to ingrained disability based bias that stubbornly remains ever present is perhaps the reason my bones ache. Please help me make the ableists go away. I do not want to be lonely any longer. I need you. I need my people. I need a community. Bipeds or typical others need not apply.


Matthew Smith said...

Running on Empty is by Jackson Browne. The film also features the song Fire and Rain, which is by James Taylor.

william Peace said...

Matthew, You are 100% it was Jackson Browne.