“From the Beginning, Disability Taught Me That Life Could Be Reinvented”

When you’re born without legs, you tend to get a lot of folks offering up advice on the other gimps you should meet—“This guy has no legs too, you gotta look him up”—and I usually dig hearing about what other cripps are doing with themselves. Growing up I really had no idea. What color wheelchairs were they using? How did they make pants make sense? Am I doing this right? Are they nice to people who ask, “Hey, you need help?” Or are they usually a dick like I am?

Finding out about other cripps has been a lot like learning about distant cousins spread all over the world; obviously we are related but very rarely have I felt like I was looking in a mirror. As a preteen reading Bop and Seventeen magazine and crushing on Kurt Cobain and Brad Renfro, I’d skim the articles my mom suggested I read (for instance, about a woman who has no arms, paints with her feet, is approximately a million years older than I am, and is super duper Christian), and I’d think, neat enough, but they were definitely not idol material. I was discovering wheelies and boys and weed and music and my ability to set the tone in a conversation, especially if my wheelchair had a bunch of cool stickers on it. But the folks using wheelchairs on the TV—where was the style, where was my mirror?

Since my teenage years I’ve traded in Bop for books, I sometimes ride a skateboard to set the tone in a conversation, my wheelchair still has tons of cool stickers on it, and I believe that ramps and wheelchairs are just as much about style as they are access. Which is why, after a quarter of a century of no-leg life, I found my wheelchair idol as soon as I read John Hockenberry’s words in his book Moving Violations (Hyperion, $16), which has quickly become my bible, my cripp style, my everything:

From the beginning, disability taught me that life could be reinvented. In fact, such an outlook was required. The physical dimensions of life could be created, like poetry… To have invented a way to move about without legs was to invent walking. This was a task reserved for the gods, and to perform it was deeply satisfying. None of that was apparent to people who stared, to them I was just in a wheelchair. To me, I was inventing a new life. To them I was getting by in dealing with my predicament. To them, I was standing on a ledge and not jumping off. To me, I was climbing up to get a better view.

John Hockenberry is the supercripp’s Supercripp, but he is certainly more than some heartwarming no-leggy simpatico for gimps without idols: he’s a radio news host for WNYC and Public Radio International’s The Takeaway; he’s won four Emmy Awards and three Peabody Awards; he’s worked for NPR, NBC, ABC, the New York Times, andWired magazine; and, most notably, is a Distinguished Fellow at MIT Media Lab. He’s a key conversationalist in dialogue about technology and human enhancement, and is actively bridging the gap between today’s top technology innovators and the innovators of disability. I, of course, couldn’t wait to ask him about all of this in our phone conversation, which I still, honestly, can’t believe happened.

I really appreciate that conversation you’re having with some of today’s top innovators about the innovators of disability. Can you say some more about this?

The creative enterprise of embracing the uncertainty of life is really the innovative mode. And sometimes I think that the world may have finally caught up with us in this regard… Walter Isaacson wrote a book, The Innovators, all about people of the tech world that have changed the world. We are these people. People that improvise with the physical constraints of life and the cultural constraints of life are creative people. It’s the poets, the artists, the people with disabilities. The techies may get millions of dollars from it, but its the double amputee over in Cameroon who designed and built his own wheelchair, who decided he was gonna fashion, from what was around him, a full life; that’s what innovation is all about.

You are touching on something I am really into, which is the link between creativity and disability; the creative act of getting along in a world that is not made for you.

I think you get the opportunity to make a world for you, which could possibly be annoying, and you often wish you didn’t have to spend so much time doing that. I think everybody is annoyed by the obstacles they encounter. But I think that disability allows you to be the author of your entire physical space, in a way that people who are normal don’t really have the opportunity to do. A lot of times the pity is a slap in the face. I am so proud of where I am right now. How can you possibly pity me? Are you out of your mind? Consider what I have accomplished—not in an arrogant way, but in an exhilarated and exciting kind of way. Sometimes you wish people could see that, rather than very superficial signs of disability.

What do you think about pity? Is it a problem?

In general I think there is a far more prevailing notion that people with disabilities are tough, aggressive, very much setting the tone in a conversation. I think if there are pity issues, some can arise out of a sense of struggle on the part of the individual. I don’t think just because you are disabled you are a person worthy of pity; I think there are people who are disabled and struggling, and that produces pity. It’s a complicated set of emotions. It’s been a long time since someone looked at me and said, “Oh, how horrible…”

What about help? I have no legs and get asked if I need help all the time.

If I am just sitting, reading my iPhone or something like that, on the corner, people will come up and say, “Do you need help across the street?” and I respond incredulously and say, “I would wheel across the street if I wanted to cross the street. I have wheels. They aren’t rooted to the corner.” … But being a parent of five able-bodied kids has made me understand that if I just top off and get mad at just anyone who comes up and asks me if I need help, my kids are gonna get the idea that the world is against me. So I’ve had to really be careful about a quick response. When I was young, when somebody would ask if I needed help I would say, “Do I look like I need help, you dickhead?” I mean, really I would just be really obnoxious, and I’ve had to really edit that a little bit.

I’m still very angry to those people.

If I didn’t have kids, I think I’d still be locking and loading on anyone who asked me for help to this day, and I am in my late 50s.

I’ve noticed if I stop moving, folks tend to think I’m not moving because I can’t, but I’m really just choosing to stay still.

And if you are going too fast, it’s like you are out of control. I got these lit-up wheels on my chair.

I saw those! They are super rad!

And they completely disarm people! It’s almost like, instead they go, “Oh, those are so great!” The idea that I would express a level of integrity with my chair, by decorating it in that way, I think immediately carries the message, “Oh, he is happy in the chair; that chair isn’t against him.”

And they are so cool.

And it’s cool! Exactly. The cool part really says—the even more important message—he is into the experience, and they can focus on that rather than, “Oh, I guess you wish you didn’t have that wheelchair.” My kids say all the time, “Why do people say you are confined to a wheelchair? That’s ridiculous—if they took away your wheelchair then you really couldn’t move.” I am liberated in a wheelchair. That’s the idea, and even my kids grasp that.

Do you think views on disability are shifting? How have we done since ADA?

It’s a complicated question in many ways because I don’t know what I would have expected. I don’t know how to evaluate what an A-plus would be for any society… And I think since ADA, which was a flawed law to begin with in many ways, a lot has improved. Especially in the latter years. In the beginning the ADA was just a contingent, unwelcome voice of the party, where people involved in the civil rights movement weren’t sure they wanted people with disabilities to be equated with Martin Luther King, equating being black with a disability. Like it wasn’t appropriate, you know, [civil rights activists were saying] “We’re not sick,” and of course a lot of people with disabilities are saying, “We’re not sick either”; that’s not the issue. There was a certain uncomfortableness going on there. Aside from communities like Seattle, and certainly the Bay Area… places where it’s kind of disability nirvana, where there is a real strong community-led disability tolerance… There have been a lot of modifications that have been made in the past several years in terms of public access, and people realize it’s just better in the long run, to just do this rather than to hold out against it. The number of people who look at a building and its accessibility as a sign of it being modern are much more in the majority than the people who look at a place that’s made accessible and see it as some sort of hospital.

Where do you see disability going in the next 15–20 years?

I think millennials are thinking much more in terms of “Boy, when’s the house gonna drop on me?” I think the sense of alarm and worry about the instability of the world, as opposed to my generation, who thought we were all going to make more money than our parents… Millennials, they see that and there is a much greater sense of planning for the future. There is a stronger community orientation among young people. Some of it is kind of annoying and superficial like Facebook, but I think as people grow up, those values of social networks online will begin to be reflected in global civic structures, volunteer organizations, and in those organizations there is gonna be a culture of “We gotta make room for people with disabilities too.” There isn’t this absolute sense of “Well, there is normal and [then there’s] everything else we don’t even talk about,” which was really the case when I was growing up.

I am so excited Washington Access Fund [an assistive technology nonprofit group based out of Seattle] is bringing you to town. Why are you coming? What do you want people to know about what they are doing?

Their program of financing assistive technology for people with disabilities is really a key. I think what the Washington Access Fund is doing is allowing people to become independent, not through some sort of medical model, but through a financing model, like owning cars and owning a home. What you are seeing with this program and its piloting success of matching people with assistive technology is a whole new approach to disability. They are a small organization, they are working really hard, they have a lot of obstacles in front of them. Their idea really excites me. Plus I love Seattle, and the people of Seattle. I had such a wonderful time when I lived there, back in the ’80s.

Source: http://www.thestranger.com/seattle/from-the-beginning-disability-taught-me-that-life-could-be-reinvented/Content?oid=20965731

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