Monday, June 1, 2015

Nature is not for wheelchairs or the accessible beach

The worst feeling about visiting my grandmother's farm was that I could never get around by myself when I was outside. The grass and the dirt made it impossible for me to move my chair with my own strength. My wheels would either be stuck or spin around in place when I tried. Yet my mother would always want me to be out of the house, to get some sun and some air. She would haul me out there, put me in one place. I would then just be there, stuck, "out in the nature" until we were done. Sure, if I wanted to be in a shade or try some different angle, somebody would move me. For most people being outside is about being active. Running, exploring, being on the go. For me every movement becomes a production. Unless there's a pavement there I have to rely on other people to move around- and often struggle. Whenever I was on the grass or out in the sand- having to wait for someone to help me, but most of the time, simply knowing I can't do it- made me feel very defeated. An odd feeling I can't fully explain. Stationary. I was treated like the characters in the novels and the movies that after years and years of being locked away in a house - because of some unspeakable condition finally get out into the world. Like precious cargo and a burden of sorts. Although I was a child I felt what I assumed being very old must be like. Unable to do things. And it was more obvious than usual. It's not that I envied other people getting to chase and run or that I wanted to spring out of my chair and join them. But I didn't want to feel so low on energy and useless.

 A lot of American beaches allow wheelchair users to rent a special chair that makes it easier to get around on the sand. The people that are with me struggle less. But to me, they're not really much different from when my parents would get my stroller or chair all the way to the water. With the big wheel in the back and my behind lower than my feet I still couldn't do it myself, but it was easier push. My friends could set me here or put me there, or even push me around, but I felt passive in the whole process. I would observe and have things happen to me, but having to once again rely on others doesn't make me an active participant in something after all called an activity. I try to avoid doing things that make me feel bad. Circumstances that once again make my disability an issue front and center, limiting what I can and can't do. Stationary or unable once again. So, when the Sabrina Cohen Foundation launched a campaign to create an "accessible beach" I was skeptical. I wondered, Are they going to pave the whole thing? I guess the idea behind is to make it easier for friends and families of people with disabilities to get them to the water. And at first I thought, how can this be a good idea, they're still not going to be able to get around themselves. Yes, it's not for me and I would never use it, but that's because I associate the term "accessible" with independence. It always takes the fun of any activity for me if I can't do it without my own entourage to wheel me around or help me in and out. Theme parks become difficult to navigate since I always need to bring a friend on whose arm I can lean to help me in and out of a roller coaster because their staff could do it.  I don't mind it once in a while and for a little bit, because I'm out with friends and we're having fun, but in the long run it would get me in that isolated mental state once again.

As I read about the beach project I desperately tried to relate it to my own experience. But then I realized I was wrong. First, by defining accessibility by what I can and can't and would and wouldn't do. Disability issues are much broader and while possibly not inclusive for everyone to the fullest extent of every conceivable limitation a beach like this could still be enjoyed by some people. But more importantly for me a project like this starts a discussion. A discussion about what people with disabilities do, what they should be doing and how we can get them to do more. Hopefully it gets the general public to think about how those with mobility issues spend their free time, what issues they face and what it must be like. The "stop and think" attitude is in turn the core of the non profit that I started, Florida Disability Access and Awareness Foundation (http;// Everything that leads to that goal I will support even if it's about nature, that by its not nature is not really wheelchair friendly. You may read about Sabrina's project on the State Farm Neighborhood Assist page:

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