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Thursday, January 16, 2014

Shameless Self Promotion via Jennifer Johannesen

Avid readers of this blog might recall some snowy pictures I posted on my way to Niagara Falls to meet with Jennifer Johannsen. Jennifer is going to launch a video project I am convinced will be an invaluable teaching tool. She interviewed me and I was very much in story teller mode. Today she wrote about how my words impacted her and I must say I am humbled. I find it difficult to assess when my words resonate with others. It seems I made a big impression. She wrote: My conversation with Bill has stayed with me in a way nothing else has in a long time. I am haunted by our talk, actually. I thought I had everything figured out--that I knew what the problems were. But after ruminating on Bill's words for a while, I do not feel inclined to pat myself in the back as I sometimes do. Instead, I feel deeply uncomfortable. For more see:

I do not want to haunt anyone's thoughts but I must confess I think it is good that Jennifer is uncomfortable. From my perspective as a person with a disability, I share Jennifer's discomfort.  I think Jennifer's discomfort is in part related to the cultural divide between people with a disability such as myself and many others and parents of children and adults with profound disabilities. Our life experience with disability is radically different. Our respective approach to life with a disability is radically different as well. I once thought I could bridge this divide and form a powerful sociopolitical force for social change. I tried and failed. Frankly, I failed in spectacular fashion and hurt some people I liked with poorly chosen words along the way. Sadly I have come to the conclusion a coalition between people with a disability and parents caring for a loved one with a disability can never be formed. I wish this were not the case but there are simply too many points of contention. For example, when I rail against the cure industry parents of children and adults with profound disabilities take me task. They slap me down hard and say with great conviction screw you I want a cure and I want it now. When I take pride in my disabled body, when I tie disability to my identity, my words fall flat. Disability is bad! There is nothing good about disability they shout. I agree. There is nothing good about being paralyzed or being unable to be autonomous. There is nothing good about seeing a beloved child or adult with a disability suffer. The anguish this causes a parent is intolerable. I will concede these parents have cornered the market on comparative suffering. I will always concede life caring for a child who will become an adult with a disability is hard in the extreme. It is needlessly hard. This is the social failure I rail against and often feel like I do so alone.

At a fundamental level I know life with disability sucks and would prefer not to be paralyzed. Obviously no parent wants their child to have a disability. No parent wants to see their child struggle. No parent wants to see their child ostracized.  No parent should ever be put in the position of having to demonstrate their child's life has value. All this is wrong, grossly wrong.  This is a given. I share their shock when scholars such as Peter Singer unfavorably compares a pig to a person with a severe cognitive disability. I find the effort of a scholar like Dominic Wilkinson to tie certain thresholds or abilities to personhood repugnant.

I have never been able to bridge the gap between myself and parents who care for a child or adult with a disability. I wonder though if Jennifer's video project can do this. She is ideally suited for the task and already knows it is unpleasant work. Perhaps being uncomfortable is a good thing.  Please read her post. It is thought provoking.

Tuesday, January 14, 2014

36 Years Ago Yesterday

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.