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Wednesday, December 9, 2015

The Season of Good Cheer?

I dread December, the happiest time of the year. Like many people at the end of the year, I become reflective. I think long and hard on what I have and have not accomplished. On New Year's day I take pen to paper and write down goals for the year. Always too ambitious, I rarely reach my goals. Beyond a general malaise, as a paralyzed man, I have added reasons for dreading December. The aura of good cheer  and help is forced upon me by strangers. Do gooders abound and the sense of charity is palpable. Everybody wants to help me. Some want to make a show of helping me.

Year after year December is a social battle field. I do my best to avoid any social interaction remotely associated with Christmas or New Years Eve. I would not consider entering a mall and when forced to shop I do so at odd hours. Simply put, I cannot be out in public without random strangers who will force "help" upon me. I cannot get in and out of my car without multiple people requesting to help me. Yesterday I was asked if I need help not once, nor twice, nor three times but rather four times. For me, this is the season of imposed "help" that is not needed or desired. I am not perceived as an ordinary middle aged guy. I am the symbolic representation of disability. I am the blue wheelchair logo--static or active. I am a classic representation of misfortune. I am the charity model of disability. Good cheer is forced down my throat by others.

The older I get the more self protective I become when December inevitably rolls around. The reality is one's life and the so called holiday season are often at odds with each other. Enforced good cheer hides much social angst. The imposition of help is in my estimation, a kind of internal cleansing for others.  I am being used and am an ideal target of opportunity. Many assumptions are made and all of them are wrong. My life must be hard. My life sucks because I use a wheelchair. Wheelchairs are bad. I am suffering. I am in pain. I am sick. I am likely unemployed. My social status is lower. All this goes unsaid. The negativity associated with wheelchair use is a given. It is absorbed just as water and food are absorbed by the body. Unconsciously we Americans learn disability in the broadest sense of the word is bad. Disability is feared. In a split second a bipedal person could be paralyzed. We are the only minority group one can be forced to join.

My town of Cazenovia is a no go zone all of December. Doing anything in town is fraught with confrontation. Enforced help is taken to an extreme. Earlier this week a mundane errand list piled up all of which had to be done locally.

Post Office: I get out of my car. I turn down two offers of help. As I try to enter the post office a man stands in the door frame holding the door open. I cannot get by. As meekly as possible I state he is not being helpful. His face flushes read with anger and he curses under his breathe.

Drug Store: I get my prescription and a few other things. As I head to the register a customer, not an employee, is making a show of clearing off the lower counter top that was, as usual covered with things for sale. I place my things on the counter and I am asked in a snotty tone "don't you have something to say?" In a neutral tone I replied "No Ma'am". She replies "You people are always so bitter Why I am nice to you people is beyond me."

Liquor store: As I look for a bottle of rum the man at the counter starts telling me offensive jokes. He asks me to slow down in that thing (my wheelchair). He asks how fast can I go. He asks do the cops pull me over. I remain stone silent. He also insisted on helping me with the door. It is clear he cannot understand why I refuse his help and offer to carry the one bottle of wine I bought to my car. He is clearly annoyed with me. I share his annoyance.

Supermarket: I enter, grab basket and am in the produce area. The manager comes over to me with an employee in tow. She tells me "I have assigned this employee to carry your basket and help you shop."  I did not make such a request for help. The manager simply assumed I needed "help". When I declined she shook her head and the employee in tow said "I told you he was one of the bitter handicapped people who insist on doing everything by themselves".

Laundromat: The laundromat is the most socially dangerous place I regularly go to. Getting in and out the laundromat has lead to some remarkably nasty exchanges over the last year. This week it was weird. After I got my laundry together I turned and saw four people were holding the outer and inner doors to enter. I am sure these do gooders were ever so pleased with each. I was appalled. Was this their intent? No. Did they embarrass me, yes.  And what could I do but mumble a thank you. Had I not done so I am sure I would have been yelled at.

People, typical bipeds, want to make a show of helping the handicapped in December. The other eleven months of the year they are quite content to disparage people with a disability. I would like to know why no one in my town cares that the stores on the main drag are needlessly inaccessible. The library makes a great show of access but scratch the surface and access is more show than reality. Subway has fought to remain inaccessible for a decade. Last year a settlement was reached with the Department of Justice. Subway agreed to make the store and bathroom accessible. Subway had 180 days to comply. Well over a year later Subway has done nothing.

Please spare me the micro aggressions in the form of help. If I need help I ask for it. Adaptive sports taught me this. To be more active sometimes I need help. But help in every day life? No thanks.  I mastered my activities of every day life long ago. I just want to be equal, to share the same rights as the bipeds that surround me. I am weary of being hurt and discriminated against. Oh yes the Garden club does a great job decorating in the fall outside the library. The wonderful decorations obstruct the entrance and I cannot enter independently without being able to press the power door open button. I objected but the decorations and work of the garden club are more important and valued than my civil rights. The town also has a great tree lighting ceremony in December. I don't go as no consideration is given to access. How, I wonder, can people be so oblivious on the one hand and yet on the other desire to help me. The dichotomy makes no sense unless help at its core is about the person offering help rather than receive said help. Think about that one please.

Tuesday, December 8, 2015

A Post by My Son: Thomas Peace

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: 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: 

         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.