My dad was disabled, and cooler than most
By Louise Kinross
Earlier this month Bill Peace, a visiting professor at Syracuse University, disability advocate and author of the blog Bad Cripple, posted a moving piece by his son Tom about growing up with a father who uses a wheelchair. Tom, now 23, has a degree in political science and plans to pursue a Master’s degree in prosthetics. Here he is with his dad in earlier days, and below at university graduation. We asked him some questions about his childhood.
BLOOM: What did you think of your dad’s disability as a child?
Tom Peace: When I was a young child, I always thought my dad's disability was cool. I got to ride around in his lap, which no one else could do. It was fun, especially when we went down hills at what my ‘little-kid mind' thought was incredible speed.
Some of my fondest memories as a kid are sitting on the floor of the living room with my dad, fixing or maintaining his wheelchair. There was a cool element to his wheelchair. [Working on it] was something my father and I did together. It was a shared experience that no other kid had. I didn't realize it at the time, but that was very important to me.
In my child's eyes, my dad was not disabled, just different. We went everywhere together. We travelled a lot and cruising down hills was the best. I remember one of my friends in elementary school telling me that he wished his dad was disabled. That really stuck out in my mind. My dad was disabled and he was cooler than the other ‘normal’ parents.
BLOOM: You wrote that growing up you stuck out wherever you went. Can you explain?
Tom Peace: My father and I stuck out, not only because many places were inaccessible, but because of the way people acted towards my father. It was the strange comments and attitudes that made me realize how different my dad was. I distinctly remember church was the first place I recognized this. I remember telling my father I didn't want to go to church anymore, and when he asked why, I told him it was because people were mean to him.
Old people would constantly harass my father and tell him that if he prayed enough, God would let him walk again. I was too little to get that this was because people could not imagine life as a paraplegic. I thought they were weird. Why would my dad want to walk again? Then we couldn't go on cool wheelchair rides and stuff.
Even today, people feel they have the right to say horrible things to my father. For example, strangers will come up to him and say “If I were like you, I'd kill myself.”Can you imagine saying that to another human being who is just out buying groceries or whatever?
Another common one is “It’s so nice to see you out.” Where is my father supposed to be? From my childhood to my teens to today, people have always come up to my father and expressed extremely negative views about disability.
Another thing that happens to this day is that people assume that I’m not my father's son. Health-care workers were the worst. Once in the ER my father was asked if he could prove I was his child.
Most often people assume I'm his caretaker. Even when I was as young as 10 people would bend down and address me, not my father. This still happens. When shopping together, a cashier will hand me the change or return his credit card to me. My father is clearly the older adult and the one who handed them the money in the first place.
People assume that just because my father cannot walk he also cannot think. He has a PhD from Columbia! As a child I was confused. As an adult I am angry.
Inaccessibility was a huge problem, as were obscure entrances. We could never go through the front door. It seemed like we always went to a rear entrance or had to use a hidden elevator. The elevators were often locked or broken (if locked, no one knew where the key was).
I still remember using the maintenance hallway of a fancy hotel in Seattle where we passed Mick Jagger. I thought seeing the back way in was cool as a kid. But now I realize that it was blatant discrimination and a major Americans with Disabilities Act violation.
BLOOM: Was inaccessibility the main challenge?
Tom Peace: Yes and no. Accessibility was certainly a challenge, but with enough time and effort, that was surmountable. Ignorant people proved to be the biggest challenge.
My secondary school administrators were outright hostile to any suggestion of equal access. Employees of all sorts of businesses clearly did not care about, or want to deal with, my father. Most access issues could be solved given a little effort and ingenuity. The primary issue was no one valued wheelchair access.
People who were supposed to be helpful were unwilling to help. The big challenge growing up was that no one gave a shit. 'Oh, the buses aren't accessible? Too bad for you!' It was not just that buildings and vehicles weren’t accessible. There was not the slightest effort to follow the law. Those blue wheelchair logos were a joke. I called them ‘the blue sign to nowhere.’
BLOOM: Tell us about some of the things you couldn’t do because your dad couldn’t enter a building.
Tom Peace: My dad and I could do anything we wanted. If a building wasn’t accessible, we did something else. I remember being in Boston. We went on the revolutionary war ship Old Ironsides. The lower decks weren't accessible. So my dad talked a commissioned sailor stationed on the ship into showing me cool stuff below deck that no one else got to see.
BLOOM: How did it make you feel as a child when you got to an event and realized there was going to be a problem getting in?
Tom Peace: In a word: excluded. I felt like there was something wrong about us that justified our exclusion. Very quickly I realized that there was nothing wrong with me or my dad. Like my dad, I got angry that the legally required accommodations were not made. It made me realize that companies and institutions like schools are not there for you, they are there for themselves. We did not fit into a standard mould, and were knowingly excluded.
BLOOM: I remember hearing your dad interviewed about a time when he was going with you on a school trip but there was no way for him to get on the bus, so he had to crawl on. What is your memory of that?
Tom Peace: That is a hazy memory. All I recall was I wanted to see the new Air and Space Museum. I also remember my dad bought me the coolest WWII bomber jacket.
BLOOM: You write about antagonism between your dad and your school principals: 'They did not like us and we did not like them.'
Tom Peace: They absolutely made things difficult for us. They always locked the only accessible door in the evening. My dad was a Cub Scout leader. They knew my father and I attended Cub Scout meetings. Even knowing this, the doors were locked at the school.
The school flat out refused to consider getting or renting accessible buses. My school pretty much did everything possible not to comply with the ADA. We did not like them because they adamantly refused to place any importance on basic access.
They thought that making any reasonable accommodation was a choice they got to make. When my father asserted that the law required equal access he was called “entitled and bitter.” Worse he was “an expensive burden on the system” and wanted “special treatment.”Asking for equal access and to participate in my education is in no way special treatment.
BLOOM: You wrote about how when you graduated from university your dad couldn’t see you because the disability seating was at the back.
Tom Peace: Disabled seating was not at the back—it was non-existent. The place my father watched from was the only random place he could get to. All the floor seating was reserved in advance, with costly tickets. None of it was reserved for people like my father who actually needed to sit on the ground level. There were no clear lines of vision from where he sat to where I crossed the stage, so he couldn’t see me. This really put a damper on the day.My father wrote an extensive post about this incident.
BLOOM: How has growing up with your dad, including his disability and access issues, shaped you as a person?
Tom Peace: Growing up with a disabled father has made me the type of person that questions everything. I always ask: ‘Why are things this way?’ I am deeply mistrustful of institutions and authority figures. I don’t mindlessly accept the status quo.
Growing up I saw how power could be abused and certain segments of the population discriminated against. My dad was regularly screwed for the convenience of everyone else. I have always wanted to help those whose civil rights are ignored. Because of my dad I know the social support systems that exist are inadequate. Over 70 per cent of disabled people live below the poverty line and the vast majority are unemployed. This made me see, at an early age, the effects of wealth disparity.
Questioning the status quo as I do shaped my political beliefs and aspirations. I look at life as a series of challenges. I know that nothing is impossible with a little effort, ingenuity and creativity.
