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Thursday, September 26, 2013


My good friend and colleague Stephen Kuusisto wrote a post at his always thought provoking blog Planet of the Blind today titled The Scary Milk Man.  My first thought when I read his post was when did I get old. There are no more milk men. Yes, I am old. I vividly recall the milk man came to our house at least twice a week.  We even had a milk box outside our back door. The milk man drove a white truck and wore a short white coat. The milk came in glass bottles. I grew up drinking whole milk--none of the low fat stuff I see on super market shelves that passes for milk. The milk man sticks out in my mind for two reasons: first, our neighbor's dog loved to piss on the milk box. My parents would get so mad! Second, whole milk in bottles back then had a layer of fat on the top. I would ceaselessly argue with my sibling about who got the first pour from a bottle. As the youngest I think I always lost this battle. I recall being so mad a glob of milk fat was floating in my bowl of cereal.

Unlike me, Kuusisto's memories of the milk man are not so warm or Norman Rockwell like. Kuusisto writes that he was afraid of the  milk man. He feared the milk man was a physician. I get this. Imagine yourself a young boy with little vision. A white apparition is at the door ready to take you away. I get this in part because my life changed on a Sunday morning when I was 9 years old. I was a typical kid until that fateful day. All I recall is pain, gut wrenching pain. Thunderbolts of lightening hot pain shot up and down my legs like the most violent electrical storm one could imagine. Think searing pain. Red hot lava running up and down your legs at warp speed. Each step I took was agony. I was a drive little kid though. I wanted to watch Go Speed Racer Go before church. I made it to the bottom of the steps. By the time I got that far I could no longer feel my legs or stand. All I could feel was pain. The sort of pain that makes one think death is preferable. I screamed out in agony for my folks. It was a blood curdling wail. I must have scared them to death. I cannot imagine what they thought. The idea I yelled out in such pain makes me shiver--as a parent I can think of nothing worse than see your child in pain. It was on this mundane long ago Sunday my life radically changed. The next ten years would be filled with hospitalizations that would last for months on end. Multiple surgeries followed. Medical stability came in the form of paralysis ten years later--just before I was about head off to college.

Memory, especially my childhood memories, are a strange collage of disjointed events. My memories are dominated by various hospitalizations. I vividly recall the good and bad of growing up with other morbidly sick children. Frankly, I am amazed I survived intact. For this, I have my parents, Arnold Gold, my pediatric neurologist,  and the dedicated nurses and therapists to thank.  While I suffered, and I mean I truly physically suffered, I was not damaged by the experience. Of course I recall the pain but at the same time I recall life changing events. For example, when I was 10 years old I recall looking out the window of Babies 11 in the Washington Heights area where the sickest of the sick kids were placed on a ward of 16. The big window in the center of the ward over looked the San Juan theater on Broadway. I remember in the winter watching poor homeless men walking in the theater desperate to get warm. I knew all I had assumed about life was wrong. Poor people existed. People lived on the street. Some of my peers on the ward told me about their dysfunctional lives. Some told me their parents had beat them. I met inner city back kids that had been shot. I felt their anger. It was a shock. I understood bias for the first time.  I saw kids, very sick kids who would not celebrate their 18th birthday, abandoned by their parents. In looking back I would not trade what I experienced for all the money in the world. I was fundamentally changed for the better. I am who I am because of what I endured.

I have been thinking a lot about my experiences because I have been working on a long range project. For the last several months I have been tracking down the family members of the people Jack Kevorkian killed. Kevorkian has an unknown but impressive body count--about 130 people. I use the term body count in deference to Stephen Drake and Diane Coleman, founders of Not Dead Yet.  I also prefer the term body count to victim or killed as it indicates Kevorkian became a cultural icon in the 1990s. The research I am doing is depressing. Kevorkian preyed on the weak and disenfranchised. Many people Kevorkian killed were women. Most of the people listed on Kevorkian's body count were  not terminally ill. What I have found is the myriad of ways life can go wrong. This makes me wonder. Why did I not buckle from a decade of hospitalizations? How did my parents cope? How did they make me feel good about myself and at the same time care for my siblings? Why am I relatively free of psychological trauma? I think about this at night. Why did I live and others die?

The mind is a mysterious thing. I wrote I am relatively free of psychological trauma. One exception exists. If I am in an elevator and I see a button SB lit up I break out in a cold sweat and my heart races. The response is primal, a sensation I have absolutely no control over. This is deeply disturbing as a rush of terrible memories lights up in my brain--the sort of memories too terrible to detail, the darkest of places I wish I could forget. As a boy I learned if I was being transported to the SB level of the neurological institute I was in for misery. SB was akin to death and hell on earth. I was a brave kid. I sucked up the idea of suffering in silence. I was a good Catholic boy. I thought of Christ on the crucifix who suffered and died for our sins. I embraced American rugged individualism. I would be strong and silent. I reasoned I was tough. I wanted my parents to be proud of me. I could take it and more to the point what good would crying do?  No one wants to be around a teary eyed kid. Maybe I reasoned if I took the pain in silence the painful test I had to endure would end quicker. I may have been a child but considered myself to be manly. The worse the pain felt the more silent and stoic I became.

Survival comes at a cost. For Kuusisto, he fears the milk man. I fear the SB button. We crippled people endure. Some of us swagger. Kuusisto swaggers as a poet. I swagger too. Apparently I am swaggering as a bioethicist these days for when I am introduced as a bioethicist I cringe. My identity is wrapped up in anthropology and disability based scholarship and activism. I am proud to be an anthropologist. I am not proud of bioethics. Bioethics has a checkered history, a disgraceful history if one considers what has been done in the best interests of the crippled. I do not want to be associated with scholars such as Peter Singer and Julian Savulescu who are the first many think of when the field of bioethics is mentioned. Yet here I am teaching bioethics and disability theory to honors students at Syracuse University. And truth be told I am loving every second of my teaching experience. So I wonder am I making a difference? Am I undermining the many wrong preconceived notions about disability? Can I, as flawed as any other scholar, make a difference? Will I be able to teach my student how to swagger and be empowered? Will my scholarship sway others? Can I undermine the utilitarianism of Peter Singer? Can I prevent a man like Jack Kevorkian from amassing a body count of disenfranchised people with a disability? Sorry, I know I am rambling.  Kuusisto's post today has my brain firing on all cylinders.