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Friday, October 24, 2008

Parents and Disability

This has been a bad week. It has been three years since my father died. I will never forget the night he died and still mourn his death. Every night before I go to sleep the last thing I look at is a picture of him holding the reigns of West by West, a stakes winning race horse he owned. The look in his eyes is a mix of pride and happiness. This is how I remember him--a proud dignified man that could accomplish anything he put his mind to. His inner strength, discipline, and will power was inspiring and as a child more than intimidating. I both loved and feared my father. By fear I mean I always strived to meet and exceed his expectations because I did not want to disappoint him. I never felt pressured and in looking back on my childhood cannot imagine how a human could have been a better father. Amazingly, I can say the same thing of my mother, she too was an ideal parent. The older I get the more I realize how lucky I am to write this. Such a sentiment makes me shudder about what could have been, that is what my life might have been like had they not treated me as an equal to my siblings that could walk. Perhaps this is why I have been carefully following the news reports in Britain about the death of Daniel James. Why, I wonder, did James parents not react to disability the way my parents did.

Last night I had dinner with my mother and we spent more time that usual telling old war stories. By war stories, I refer to hard times I had growing up with profound neurological deficits during a medical era that did not include CAT Scans and MRI machines. While I recall far too many hospitalizations and painful procedures what I remember the most is my parents determination that I would receive the best medical care. In return, I was was expected to keep up with school work and they reminded me that just because I was sick did not mean I would be treated one iota different. My parents reminded me that I may have had physical deficits but my mind worked perfectly fine. I knew as they did a lot of kids were in much worse shape than me. The underlying message was that I should suck it up and move on with life. Pity was not in their realm of understanding. They told me and my siblings that in the Peace family no one gives up and all are treated equally. By extension, we were expected to stick up for one another and ourselves. If we encountered trouble beyond our ability we were expected to seek their help.

My parents tough love and belief in my innate ability was a life lesson I wish Mr. James parents had bestowed upon their son. When I told my mom about what Mr. James parents did, assisted in his suicide she visibly shivered. Her response reminded me of one of an encounter I had when I was first disabled. I recall going to high-school after I began using a wheelchair. I had not been to school for a long time and I was extremely anxious about returning. I was a senior and drove myself to school where I got my first lesson about the lack of wheelchair access. There was only one accessible entrance and handicapped parking did not exist. I moaned and groaned about this when I got home and my mother got increasingly short tempered as I spoke. She told me to stop complaining and do something about the lack of wheelchair access. I wondered what I could do as a student? She told me that when I drove to school he next day I should park in the principals spot since the school had no handicapped parking. If the principal had a problem with that, he should call her. I loved the idea, parked in the principals spot and during my first period the principal came into my class looking for me. He wanted to know why I parked in his spot. He was not amused and my peers looked at me in shock. With resolve I replied there was no handicapped parking in any school lot and only one accessible entrance. I did not know what else to do except take his spot since I had no where else to park. Satisfied with my answer, the principal left the classroom. The next day two handicapped parking spots were next to the principals space in the lot.

I learned two valuable lessons thanks to the seemingly minor experience described above. First, I had the total support of my parents. Second, my wheelchair did not, to borrow the words of Mr. James, make me a second class citizen. Thanks to my parents, I knew that I was no different than any other person that could walk. They expected me to defend my human rights. Thus when I think of Mr. James and his parents I feel deeply depressed. Why did Mr. James and his parents accepted society's overwhelmingly negative view of disability. Why I wonder could they not support their son's inherent humanity? Is walking really that important? I condemn the parents decision to have a hand in their son's suicide. It was a cowardly and selfish act. Because of their actions Mr James suicide is now more than a family tragedy it is a social statement. They have sent a clear message to all those that read about their son: the life of people who are disabled is not valued. Death is preferable to disability. This is a gross violation of the human rights of disabled people in England and beyond. My mother and father knew this 30 years ago. Too bad the rest of society has yet to acknowledge this fact.


yanub said...

William, I have been keeping up with your comments regarding the death of Daniel James. I want you to know how much I appreciate your statements in defense of people with disabilities. Like you and your mom, I am horrified at the actions and attitude of James's parents, and the re-eruption of societal approval for eliminating people with disabilities.

william Peace said...

Yanub, Thanks for your kind words. I remain baffled by Mr. James parents. How could they not see that their son was the same man before and after he was disabled. What made Mr. James unique, what makes all humans unique is our cognitive ability. In this sense, Mr. James was no more or less disabled than any other person waking the street or playing on a rugby field. To me the horrifying part is the great swell of support of his parents have received from the press. This is a stinging indictment of society that needlessly continues to marginalize people with disabilities. Mr. James death is thus a giant step backwards in terms of recognizing the human right of disabled people.

yanub said...

I'd go further, and say it isn't our cognitive abilities that make us human and worthwhile. A person with cognition issues still is a person. I've quoted her before, and I know I will again, but I think Sojourner Truth summed it up for all time in her famous speech, "Ain't I a Woman?":

"Then they talk about this thing in the head; what's this they call it? [member of audience whispers, "intellect"] That's it, honey. What's that got to do with women's rights or negroes' rights? If my cup won't hold but a pint, and yours holds a quart, wouldn't you be mean not to let me have my little half measure full?"

Whatever the size of my life in the estimation of anyone else, it is my life. I want to have it in full.

william Peace said...

I agree a person with cognitive deficits is still human. I did not intend to imply they were not valued members of society. This was sloppy writing on my part.

A Jersey Girl said...

As Randy Pausch said, hitting the parent lottery can make all the difference in the world. Your mother sounds wonderful and you were all blessed to have each other.

william Peace said...

Jen, I feel lucky to have had great father and mother. If I learned one thing growing up it was self reliance and determination will take you a long way. This may sound trite but when you add in a dose of humility and 30 years of using a wheelchair I tend to worry less about myself than those around me.

M. said...

But suicide is a basic human right and his parents defended it! It has nothing to do with "accepting that he was a second class citizen because of his disability" ir "eliminating people with disabilities". Everyone has the right to die if they want to, whether disabled or not.

Many people choose to commit suicide whether they are disabled or not. Some people commit suicide because of their disability, and that is their right. Different people have different values. Some people are able to enjoy life even if they are fully paralyzed, blind, deaf and in constant pain. Others find their lives worthless if they cannot walk. It is their personal choice and it is very inconsiderate of you to pass value judgement for that.