I Resent the World, Not My Paralyzed father:
A Rejoinder to Zach Thompson
Growing up was different for me. My father was paralyzed and used a manual wheelchair. There were no other mothers or fathers who used a wheelchair when I was a kid. We stuck out everywhere we went. What I remember the most was the lack of wheelchair access. It seemed as though everywhere the two of us went access was a problem. Nothing was simple—even places that were supposed to be accessible had needless barriers. I was on a first name basis with the principals of both my elementary and high schools because my school was accessible in name only. The principals were not supportive. They did not like us and we did not like them. For example, all the after school programs, concerts, Boy Scout meetings, and parent teacher nights were technically accessible but my father always had trouble simply entering the school building. The accessible door was locked at night. Curb cuts (an eye sore according to the high-school principal) were blocked. The auditorium had no accessible seating area. It was one battle after another.
I grew up baffled. By 4th grade I knew the most mundane event was never, well, mundane. I didn’t understand why there were so few ramps, curb cuts or working elevators. The school elevator was always locked and no one ever knew where the key was. When I got hurt or in trouble (I was good at both) when my father showed up people were stunned. This was weird to me. My father was just another Dad. I did not care that he was a T3 paraplegic; meaning he is paralyzed from about the mid-torso down. I know this because every body I knew asked me why he uses a wheelchair and when was he paralyzed. My father was paralyzed when he was 18 years old; long before he was married and before I was born. All my memories include my father using a wheelchair. This was the norm to me. Unlike Zach Thompson, I never resented my father for being paralyzed. Link: http://www.vice.com/read/how-i-learned-to-stop-resenting-my-disabled-father I did resent the way he was treated by others. Frankly the lack of access just pissed me off. What’s the big deal? Even as a kid, I knew wheelchair access was required by law.
I don’t get it. Resenting any person that is disabled makes no sense to me. It’s not like my dad woke up one day and decided wheelchairs are awesome and wanted to use one the rest of his life. The need to use a wheelchair could happen to anyone. People with a disability are the only minority group that one can join by happenstance. Some of my best childhood memories involve sitting on the floor with my dad fixing up his wheelchair. As a kid I was fascinated by my dad's wheelchair and wanted to know how it worked. The only thing that made me angry and resentful was how hostile people were to my father. I could never understand why he was treated so badly. Why wasn't my father allowed to be a chaperone and go on school trips with me? Why was participating in any school event always a problem? Why did my father always need to enter a building from the side or rear entrance? Why as a little boy did I call the iconic blue wheelchair logo the blue sign to nowhere? That damn sign literally led you nowhere that was accessible.
What bothered me the most was that the principal and other school administrators were mean to my father and resented his existence. In retrospect, I think they hated him. They hated dealing with wheelchair access issues. My father merely wanted what all parents desire--to be involved in my education. He was forced to make this a demand. He had no choice but to be confrontational. My school, as I would learn as a teenager, flagrantly and unapologetically violated the Americans with Disabilities Act (ADA). For instance, when I participated in the school drama club and musical productions, the auditorium was nor remotely accessible. The ADA clearly states that all public school buildings that receive money from the federal government be handicap accessible. The newly renovated auditorium did not have any handicapped seating area. After a long and heated battle, the school did include a small area for my father and I presume all other wheelchair users to sit. The school did not build this area to code. They merely created two flat sections in the rear of the auditorium. The so called handicapped seating area quickly became a storage area for spotlights, storage boxes and a dumping ground for miscellaneous stuff.
One of my favorite things to do when I was bored in high school was to walk around the school and find ADA violations that I knew would never be fixed. My father was advocating for his civil rights. More importantly, my father was advocating for the next generation of people with a disability who would attend or visit my school. He was advocating so the next student with a disability, or the next parent, would not encounter illegal barriers to inclusion. He often told me the he did not have the right to a publication school education until 1975.
None of these events, memories or battles made me resent my father's disability. They made me resent the public school I went to. They made me resent many institutions that flagrantly violated the law of the land. They were violating civil rights legislation enforced by the Department of Justice. Screwing with anyone’s civil rights is just wrong. What bothers me the most today is that not much has changed. People still don’t care about the rights of people with a disability. The ADA is not even considered civil rights legislation by some people. People just don’t get it. I do. I understand discrimination when I see it. When I graduated from high-school and college I was angry. My anger is well placed. At my graduation ceremony from Hofstra University, a school well known for wheelchair access, my father was forced to sit way in the back with an obstructed view. He wrote about this on his blog Bad Cripple and called handicapped seating a disability ghetto. I am still angry about this. My father helped me pay for college. Yet he could not even see me walk across the stage. Link: http://badcripple.blogspot.com/2014/05/the-disability-gulag-at-hofstra.html
In Kenny Fries book, The History of My Shoes and the Evolution of Darwins’s Theory, he argued that disability is not a disadvantage but rather human variation. Other scholars like Gregor Wolbring in the documentary Fixed make the same point. Disability has been and remains an essential part of human life and evolution. Disabled people like my father are not somehow less because they cannot walk, see, or hear. Disability is variation of the human condition. I would not be the man I am today if my father had an ordinary body. I would not value equality to the extent I do. I would not desire to help others to the extent I do. I would not care as much. I deeply care about others—all others regardless of race or creed. I want to make the world a better place for the next generation. Had I not experienced the needless social adversity and out right bigotry my father faced due his basic desire to participate in my childhood I would be a different and lesser man. I learned first hand to question authority and the status quo. I learned some hard lesson about how wrong oppression is. I learned questioning the status quo can only benefit all of us.
Really beautifully written. You must be very proud of your son.
How true and good is this. Like you Zach our girls experienced similar. They were 7 and 4 when their dad, my husband became Quadriplegic. The 4 year old one does not remember her dad before he was paralysed and the 7 year old it is vague. I know because they have told me and I was there that they had the best childhood and as adults now they are the first to see when there are issues such as you describe - lack of accessibility. Sadly their dad was killed in 2007 and our family has never been the same. He was of necessity such a fighter and had a very black sense of humour which at times had the house rocking with laughter... of course he always had that sense of humour but it was sharpened by adversity and he was never shy in his responses to stupidity.
I have shared this in my personal and blog social media because it is 100% accurate and more "normal" people have to realize how their casual dismissal of disabled rights grossly impacts our lives.
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