BILL – Disability Culture, Identity and Pride

BILL – Disability Culture, Identity and Pride

There’s a case that I’m tremendously upset about in Indiana, a month or two ago
Interviewer: the hunter
Bill: the hunter living as a vent-dependent quad is rough. It’s not for everybody. I think the decision to go on a vent is not for everyone. But the cultural expectation not to go on the vent makes a nuanced, educated decision impossible. So it’s about the framing and this is the big issue that I have with contemporary rehabilitation for children and adults, particularly the people that have experienced a spinal cord injury is that it’s very, very short. It could be
a matter of literally weeks. The focus is not on what it
should be: maintenance of your body, meaning how do you manage to pee and poo? I’ve joked with people that I want to join the shit and piss club. When you can control that, everything else is possible and that’s the trick after you’re paralyzed. It takes as a non-MD I can say it takes 2 to 5 years before your
body really gets accustomed to being
paralyzed. I look at myself now I haven’t had a urinary tract infection for 25 plus years. I really know what I’m doing. What I learned came from other paralyzed people. I learned squat from a physical therapist or an occupational
therapist or a social worker position or a physician… and that’s not criticizing. That’s not their job frankly. But without exposure to other people with a
disability – comparable disabilities – without any exposure to disability culture – that’s a real problem because the negativity is all one is going to see. Look. I don’t want to be paralyzed, being
paralyzed sucks. It does. There’s no way around it. So what. Everybody has an aspect of their
life that they don’t like. Name one woman that says… will look in the mirror and say “My god, I have a great body”. Never going happen. We all have our issues mine just happens to be very, very obvious. You could pass a guy with schizophrenia and not know it he’s a lot more disabled than I am, and in need of a lot more social supports. But people don’t know that. People don’t know what others can do. Tim Bowers died within 24 hours of a cervical injury and he was told that he would ever hold his child, that he would never hunt again that he would live in a nursing home. These are all real possibilities. Are they inevitable? No. In fact, the best hunter in the nation as I am told, I’m not a hunter guy… lives in Indiana and hunts from a sip and puff wheelchair. Why wasn’t he brought in? Why were the bioethicists saying, “This is great, that person asserted his autonomy!” No! That person was given one side of the story. Our side of the story is just not told, not wanted, not appreciated. We are “x-nayed”. We are really prevented from having a debate. This is why the slogan “nothing about
us without us” really resonates. It’s true. What do you think
when you see a person with a disability? I’ve recently become good friends with
John Kelly. He’s the Regional Director of Not Dead Yet in the northeast. And he has a sip and puff wheelchair. And he’s an upper-level quad, vent-dependent. And I see him and I think about all things he can do. I think “Man, he’s a hardass.” I see somebody at the ski place where I ski one dad with 2 little girls must be between like 5 and 7. And it’s just an amazing thing. These girls jump on top of him and he hops across to get to his ski gear where he has everything amassed for these
girls in a massive area of pink and pastels. I see an old person with dementia, and I wonder what do they know? Can they tell me the New York Yankees line-up for 1929? All I see is what a person can do. I don’t think about walking, cognitive skills… What can that person do? How the whole world doesn’t see it
that way baffles me. When a traumatic life-altering event takes place you need to
reinvent yourself. When I was paralyzed I reinvented myself. When I got divorced, I reinvented myself. Part of that year-long to two year adjustment to disability is figuring out how much you want your disability to be part of your identity. 35+ years later I know exactly where it is, you know. It’s
definitely part of my identity – is it the entire part? Of course not. That’s handled on an individual basis. What people without a disability don’t get is disability pride I’m really proud of what I can do. You know, and I like to challenge myself physically and mentally, and professionally. And it’s why I push myself so hard to learn how to ski. At my level paralysis, which is T3, skiing is really pretty tough. If I were
younger I would take 5 years to learn how to mono-ski. But I don’t… I’m not 21, I’m 50— I was 49 when I took it up and (pause) it was hard. I can now ski independently. I cannot get on and off the lift by myself but if 2 people help me on and off the lift I’m good to go I remember going downhill with my son and we were skiing together and I really *wanted* to ski with my son. We’re finally on intermediate slopes, and I’m not fast… my son is a speed demon. But my son comes up to me “Dad you’re so slow I can’t take it any more!”
and just zooms down the mountain and I just laughed and I thought, “You know what, I’ve done something right as a parent.” Because I was just another dad out there. And I was proud of that! How many 49-year-old paralyzed guys are there, that
are going to learn how to ski? Part of that is also taking care of your body but it’s acknowledging I’m different, that I will forever be different… So what. And what I curiously learned is that on various ski slopes disability can be cool and paralyzed skiing guys are cool! That’s the only time in my life I’m cool. and that’s really a pretty heady thing, you know? And I really revel in that!
Interviewer: You mean cool to the other skiers?
Bill: I *feel* cool! I have my overpriced Spyder shirt and I’ve got this big-ass bib, and you know, I feel really good about myself
as a human being and this is what people miss with disability. This is where the divide is between people that grew before the ADA and afterwards. Because I was in New Hampshire at Loon Mountain which has a very big adaptive program and I was showing up on a midweek which
is unusual and I noticed the New Hampshire
Ski Team bus showed up and on the back of the bus – the big bus, not the little bus – big cultural divide there! – is a young teen girl on the ski team with her own rig of mono-ski. And she’s got all her own gear, giggling, laughing, ignoring me which was great… And I watched her ski, and she saw me skiing. We got back at lunch time, and she’s kind of eyeing me up and down and she came over to me and she said “Who made that… that… kind of wheelchair?” ‘Cause my wheelchair’s 30 years old. It’s so out of date it’s beyond belief. But it works for me. and I said, “Well, the frame is older than you
are.” And she just shook her head in total disgust. “Why do you old-time crips have to be so difficult?” (laughter) I did not laugh, and I said, “Well, it was a different world back then…” and god it made me happy. She didn’t know what I went through. She didn’t know that when I tried to get on the bus once someone spit on me in New York City. She know that Madison Square Garden for decades had no handicapped seating. She didn’t know that when I went to get on an airplane 1979, the year after I was paralyzed, I would get there at 9 in the morning and maybe I would get a flight that day because I was deemed a flight safety risk. She doesn’t know about Ed Roberts, Harriet McBryde Johnson… Part of me hopes she never knows who these people are, because she’ll never
experience prejudice. My concern though, is what happens when she *does* encounter bias? She’s woefully unprepared to assert her civil rights… and that’s a problem.

Author: Kennedi Daugherty

1 thought on “BILL – Disability Culture, Identity and Pride

  1. Again – he is spot on. Too many people newly injured are told how bad their lives are going to be…and there is the expectation that after that they will choose to pull the plug…

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