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Wednesday, August 24, 2016

Another Letter to Young Cripples

I am disappointed in young cripples. They are not like me. This is good and bad. The good is that thanks to broad based advances in medical technology they will not suffer like I did. Pain and disability go hand in hand but not to the degree it once did. I experienced three massive spinal surgeries, spent more than a year in a body cast and for the first four months post surgery I was strictly for bidden from getting out. I estimate I had at least 20 spinal taps over the course of ten years—age 9 to 18.  I experienced pain so severe that I remain haunted by the memories. To this day, I have nightmares about pain I experienced. However, thanks to brilliant parenting and compassionate care from a host of people, I escaped ten years largely intact.

It brings me great joy to know the first post ADA did not live on wards of 16 morbidly ill children. I am thrilled sick children today are able to have their parents at their side and provide much care both physical and emotional. My spirit soars on the rare occasion I get to see a neurological pediatric ward. Kids who have severe neurological conditions have it easy in comparison to the past. For this I am eternally grateful. My experience is firmly part of medical history.

While I left the Catholic Church long ago, the Catholic Church has not left me.  I joke that like a recovering alcoholic I am a recovering Catholic. As a philosophy of life there is much to admire about being Catholic. Think the Our Father or my mother’s favorite the Hail Mary. The cadence and words of the Apostle’s Creed is burned deeply in my brain.  Forget the organization known as the monolithic Catholic Church.  The men and women in the business of running the entity known as the Church—Cardinals, Bishops, the Pope and Vatican officials—are flawed and many are the epitomy of evil. Here I refer to the Catholic Church protecting priests that molested an untold number of boys. For this I can find no forgiveness.

Amidst all the pain and suffering I learned how to endure. We endure in a myriad of ways. I endured great pain. I endured months in the hospital. I endured wearing a brace for years. I endured body casts. I developed a dangerously high threshold for pain.  I endured a decade in and out of the hospital when things we take for granted did not exist. MRI, CAT scans, imaging technology that makes my knees buckle in awe. This is great. Yet we have missed something. All my suffering and my ability to endure made me mentally tough. My parents made sure of that. I was held to the same standard as my typical siblings. I was never special. And I mean never. I was not special at school or at home. I was not special at the hospital. I was not special when we went to Church on Sunday and we always went to Church. My parents, children of the Depression and dysfunctional families, were as reliable and hard working as a machine—a machine that never broke, never shut off and worked like clock work 24/7. I remain in awe of my parent’s balance and love freely and generously given. They never acted out of character. They never got drunk. They did not curse. They were never mean. They did not raise their voice in anger—they never raised their voice.

I am who I am because of my parent’s ability to parent me at the worst of times. They regularly got calls in the middle of the night about my physical condition. They knew I was close to death far too many times that I want to recall. They knew I was in pain. This created something beyond the typical mother/father child relationship. At the core of that relationship was the dichotomy between pain and joy. When I went to brace clinic for year after year it was a pressure packed affair.  Every morning I checked my Babinski. A positive Babinski meant I would shortly be in the hospital and in great pain. A positive Babinski meant an immediate drive to NYC. An increase in the curve of my spine meant surgery. At the time, mid-1970s scoliosis was experimental surgery. What is to be done? Spinal fusion or Herrington rods? My parents chose widely—spinal fusion.

The joy my parents made sure to bestow upon me were small. They were also critically important. Every brace clinic visit appointment was followed by what my father called “dirty water hot dogs”. I loved hot dogs. I still do. After brace clinic we ate hot dogs on 168th street and my mother and I went to the Cloisters on our way home. For each and every time I suffered, my parents made sure I experienced some degree of happiness. Mostly they gave me a good experience. My father would let me into their bedroom and closed the door. He would take off his business suit and show me how to fold it and place it in his walk in closet filled with suits. He would have a drink and smoke a cigar. I could drink a coke, a rare event. I felt like I was going to the inner sanctum of masculinity.  I felt loved and safe. Pain ebbed away. I felt peace and love.

Crippled children do not experience what I did. They suffer differently. They are not in the hospital as long as I was. Again, great, suffering is never good. But the suffering I experienced taught me many life lessons.  Without my parents stapled to my side, as is the norm in hospitals today, I learned how to take care of myself. I learned how to advocate for my health care and well being. I had powerful adults behind me willing to break any and all hospital rules. My job was to get better whatever that meant. What better was ranged wildly. Better sometimes meant living through the night. Better sometimes meant enduring severe pain that caused me to silently sob for hours on end. Thunderbolts of pain shot up my legs like an assault rifle firing away endlessly. Pain meant spasms so severe my skin turned read. I spiked fevers to 106.8 with my body violently shaking and my teeth chattering. Pain meant being taken from my home in an ambulance in septic shock with no discernable blood pressure and a weak and thready pulse.

I take no joy in suffering. I tell others I was an old man at 10 years old. I was a stoic and did as I was told. I did not complain. This by itself taught me so much about life. I was surrounded by people who cared for me. In the absence of medical technology, what I recall the most was the kindness so many expressed. I wonder where that kindness and compassion have gone. In the 26 years that have followed the passage of the ADA the civil rights of people with a disability are violated on a daily basis. A system exists with regard to disability. I have inalienable human rights and it is against the law to discriminate against people with any sort of disability. This is wonderful but does nothing to undermine the deeply ingrained ableism built into every component of American life. In order to protect and advocate for their disabled children the current generation of cripples has been coddled. They do not have the edge I do. They do not have the ever-present wariness of ableists. Ableists are visible and invisible. Some hide amongst us. The ableist bigots are easy to spot. It is the closet ableists that the post ADA generation does not sense. Contemporary cripples know they are despised. We are not welcome. We are an unsightly lot, a problem typical others do not want to think about. We who are blind, deaf, paralyzed and all those whose bodies are far from typical represent just how fragile human life is.  Difference is to be feared.  This has not changed one iota in the last thirty years. We are animals, highly social animals that are wired for fear or flight. Post ADA and pre ADA cripples know our presence is never routine or welcome.  Kuusisto has written:

You must feel they abhor you, that they’d wrap you in old newspaper and throw you out with yesterday’s fish if they thought they could get away with it. Insult to injury: they often “do” get away with it, tasering autistics, denying access to medical help, defying civil rights laws as a prima facie position—“let the cripple sue us—it will take him years—and in the meantime we can put up (insert structure or software system here) without the thin extra dime accessibility would have cost us. Ableism is knee-jerk and wholly consistent.

What has changed is the reaction to the presence of crippled people. Rather than routine and flagrant discrimination our civil rights are ground down by an evolutionary process. One example should suffice. It was a life altering moment and is a story I never tire of telling. After ten years of being medically fragile, in my last year of high school I became physically stable. This stability came at a cost. I was paralyzed, weak, insecure and had no idea how to navigate the world in my clunky poorly designed Everest and Jennings wheelchair. I knew I was being treated differently. Everywhere I went I heard people whispering behind me. Many people did not whisper—they flat out stared, pointed at me, and joked only I could go from the kid that was always sick to the kid that is crippled. Paraplegic and quadriplegic jokes ensued. My peers thought my presence was hysterical and I was the butt of never ending “humor”. I knew my social status could not be lower. I withdrew. One day however I was feeling sorry for myself. Upon returning home I told my mother that there was no handicapped parking space at school. The tone was clearly woe is me. My mother would not tolerate whining. She told me to drive to school the next day and park in the principal’s spot. If he had a problem with that he should call home. I did exactly what my mother told me to do.  In first period the principal himself showed up in my class. “Who is William J. Peace and why is his car in my parking space”. You could have heard a pin drop. I was escorted by the principal to his office. I felt like I was going to the gallows. But then I thought screw him. I did exactly what my mother suggested. I told him there are no handicapped parking spaces. It was hard to go from the student lot to the only wheelchair accessible entrance. He listened and shortly after we entered his office my mother arrived. She gave the man a withering look, her eyes ablaze. Nothing is more frightening than a mother defending her child. She suggested I leave the office and go back to class so she and the principal could have a talk. I pitied the poor man.  The next day when I drove to school handicapped parking had replaced the principal’s spot. Overnight I had gone from the crippled kid to the guy who had gotten his own parking spot next to the entrance door.

Fast forward to today. What would happen if I followed the same course of action my mother suggested? I would likely have violated school policy. That policy was long and had to be signed at the start of every school year by students and parents alike. I would have been reprimanded by my teacher and surely the principal for violating school policy. A meeting would be scheduled the following week with the guidance counselor, my homeroom teacher, parents, principal and myself. I would be reprimanded for violating the student code of conduct. The lack of handicapped parking places in the student lot would be addressed. At the conclusion of the meeting a committee would be formed to investigate the need for handicapped parking. A month later the assistant principal, teacher representative, legal counsel, and facilities engineer would meet. Another month would go by before a full report was sent to the principal. The committee would likely suggest there is a need for handicapped parking but the matters involved are complex. The legal representative would be concerned about the liability issue handicapped parking presents for “special students”. The guidance councilor is concerned about how “special needs students” will be perceived by other students. The principal would then meet with the original committee and he has concerns that this is a highly specialized issue and thinks the mater must be discussed with the board of education. Another month passes or maybe more. Handicapped parking is placed on the school board agenda. The agenda is full and the board runs out of time to discuss the matter. Another month goes by and the board of education discusses the mater. All agree handicapped parking needs to be addressed. Again, anything dealing with “special needs” and “special students” is a complex matter and has significant liability issues. The board of education believes an independent outside company must be consulted. Three months later the board of education reviews three outside consultant cost estimates and selects the lowest bidder given the fact handicapped parking is not a high priority. Four months later the outside consultant requests to present the findings to the board. The board of education agrees handicapped parking is needed. However the board is concerned about the cost of such a project. The board suggests the state be contacted because the cost is significant given the small nature of the need. Perhaps state funding is available. Yet another month passes awaiting word from the state.  The state finally emails the principal. No state funds are available. However, given the fact the ADA is enforced by the Department of Justice, a federal agency, perhaps federal funds are available. Legal council for the school writes to the DOJ. Six months pass and the DOJ reports there are no funds available to the state. At this point a year has passed. As a senior, I am about to graduate. I go off to college. Unbeknownst to me or my parents, following my graduation the issue of handicapped parking was discussed again at the board of education. A parent pointed out the only student with a disability had graduated. Budgets are very tight and the parent wonders why are we spending so much on handicapped parking when there is not a single handicapped student using a wheelchair that needs such a spot.  Many attending nod in agreement. Handicapped parking is shelved until there is a demonstrated need for such a spot or spots.

Absent in the absurdity above is the voice of any person with a disability.  It is all too easy for me to critique the first post ADA generation. They have had a radically different experience in terms of ableist bias.  The discrimination people with a disability experience today is rarely as severe or blatant as what I was confronted with. Contemporary cripples don’t know the history of their people. Few if any secondary schools devote time to the ADA. It was not part of my son’s secondary curriculum growing up. Indeed, when he equated disability rights with civil rights when learning about the great civil rights movement he was repeatedly told disability rights were different.  The first generation of post ADA cripples have escaped what I and many others with a disability experienced. They roll on campus and have no clue that I and others with a disability were not legally entitled to an education until 1975. I was 15 years old. They have no idea I was spit on for having the audacity to force my way onto a NYC bus. They have no idea Madison Square Garden and Yankee stadium were not accessible and openly hostile to people who used a wheelchair. The last time I was in Yankee stadium I was taken outside in handcuffs. I knocked over a very expensive TV camera because it had replaced handicapped seating. I was told by an usher to watch the game in a bar. People like me I was told repeatedly had no place being present. At Madison Square Garden after a Ranger game I was in the lift leaving after having been subject to harassment all game when a man urinated into the lift. When he and his friends realized what he had done they laughed loudly.

When I went to college in 1978 I did not expect to be treated with respect.  I assumed my presence was unwanted. I knew this as my first roommate walked in the door, looked at me and said I am not rooming with a cripple and walked out.  It did not take me long to figure out I needed to excel. I knew a typical job was unlikely to happen. Education was the key and my hope for the future. Excel I did. I did not want to be a good student I wanted to be the best student. I wanted to crush my peers. I wanted to crush them because I knew ableist bigots abounded. They abounded in 1978 and they abound now. Robert Murphy told me on the first day of graduate school at Columbia that I had to be a star for if not no other student using a wheelchair would be accepted for a decade or more. I loved this. I was a bull and a red flag had just been put in front of me. Excel I did. I graduated with distinction and an Ivy League PhD.  These experiences created a drive I do not see in the post ADA generation. They get upset about things I would consider of little consequence. The bus driver with a shitty attitude about tying down a wheelchair. This is a far cry from what the Gang of 19 experienced in Denver or what I put up with as part of the EPVA bus buddy program. Bus drivers were not just hostile but purposely broke wheelchair lifts and the passengers expressed open animosity. I feared for my safety many times. I was not sure who was more frightening—the drivers or my fellow passengers.

This history is simply not taught. Given this how can I expect the first ADA generation to know and value their rights?  They have no clue about the thousands of badass cripples who put their bodies on the line in order to pass dozens of laws far less known than the ADA. Some may know about the Capital Crawl, a pivotal moment for sure. I implore the post ADA generation, crippled boomers if you will, to read about our past. Read Robert Murphy’s The Body Silent, the first known scholar to seriously address the social implications of disability.  Murphy taught me to channel my rage using my intellectual abilities. Read John Hockenberry’s memoir Moving Violations and learn about the drive it took to make a career at NPR. Read  Mark O’Brian’s How I Became a Human Being. O’Brian was one of the rolling quads along with the beloved Ed Roberts who made universities nation wide accept students with a disability. Read Connie Panzarino’s The Me in the Mirror and be thrilled with how she forged a powerful life. Read Leonard Kriegel’s Flying Solo. Kriegal is filled with anger and how he reimagined masculinity with his searing words that are laced with testosterone. These men and women are not to be messed with.  Deaf people talk about deaf gain. Deaf gain is very real. Indeed, I am jealous of much of Deaf culture and their wonderfully beautiful language.  Deaf people are the ultimate bad asses. And this is exactly what the first generation of post ADA cripples are missing. They are not bad asses. They need to channel anger outward to those that knowingly oppress our people. Rage against social stigma. Rage against needless physical barriers. Rage when your civil rights are violated. Its okay, I promise. You will be amazed by what angry cripples can accomplish. Ed Roberts called this cripple power. 

3 comments:

Q said...

From a young cripple, thank you for this post (and series.) Disability history taught me that my anger against ableism was not out of place, and showed me that there is still much to be done. Grateful for all of the "bad asses" before me.

Alex Schadenberg said...

Thank you Bill.

This is an excellent article that helped me, an able-bodied person, better understand the nature of living with a disability.

Thank you for your honesty.

william Peace said...

Alex, Honest I am. More than once I have been told I am pathologically honest. Thanks for the kind words.

Q. You are one of too few that know disability history. I am torn about this lack of knowledge. One part of me is thrilled young people do not encounter the sort of flagrant discrimination I encountered. On the other hand ableism has evolved and become part of the fabric of society and I have no clue how to root it out.