A couple weeks ago I finally got to go bike shopping. This isn’t as easy as it probably sounds to most people, but the reasons for that related to my cerebral palsy will have to wait for another day. What I found so interesting was the mere fact that I met someone else with cerebral palsy doing the exact same thing.
I may be dramatizing just a tad, but I can assure you that meeting someone else with CP out of the blue is a rare occurrence in my life. I don’t mean to suggest that we’re some sort of endangered species, but meeting someone in everyday life with very similar characteristics who is doing the same thing at the same time simply doesn’t happen much when you have CP (or, I feel safe saying, most other physical disabilities).
I won’t use his real name, but Joe was out with his mom and dad, and they were also looking for an adaptive bike. He was about high school age, and probably has significantly less spasticity than yours truly. My mom began telling his parents about the adaptive biking program I recently started attending on Saturdays down by the river, and I later e-mailed Joe’s dad a few specific details.
In his reply, Joe’s dad started telling me how he was glad that Joe got to see that I can drive, and how he is always talking to his son about the importance of being independent. It was such a rare opportunity that I had to refrain from offering every piece of relevant experience that I could think of.
I wanted to tell the kid to do all of those annoying, pain-in-the-ass exercises his physical therapists are (hopefully) telling him to do. I wanted to tell him to hold on to any friends he has in high school as best he can because such relationships may be hard to come by in just a few years. I wanted to tell the kid to push past his comfort zone, whatever that may be for him, because it only gets harder to do so with every passing day.
No, I really don’t think I know so much about living life with a disability that I needed to offer advice to a virtual stranger. In fact, just the opposite was at work. I saw the encounter, which hopefully won’t be a “one and done” opportunity like many in my experience have been, to engage in a give-and-take about the disability part of my life.
Of course, offering a ton of advice or even just relevant experience right off the bat is one of the best ways to have it fall on deaf ears and find people inching away from you as fast as possible. At least that was always my reaction as a kid on the few occasions that I met someone who might actually have a clue about life with a physical disability.
The problem, I think, besides my being a teenager, was that there were only a “few occasions” to meet adults with disabilities that could offer a give-and-take, advice, or stories about relevant experience. Maybe as the world delves into “social networking” that’s all changing, but my fear is it’s just adding to the general noise level that being in touch 24/7 has created. I’m believing more and more that internet contact isn’t nearly enough for any group, including the disability community. You can’t get to truly know a person online, or have them get to know you, which is what builds trust and the ability to share and learn from one another.
I’m obviously not disparaging online communication. In fact, I just recently joined Facebook and LinkedIn to learn what those sites are all about. Among other things, I hope to engage other people with disabilities and have them engage me. I’d like to find something more than someone to IM, or “poke,” or whatever.
If you have looked around, or “clicked around,” on this blog, you no doubt quickly learned that it is dominated by sports posts. They get the most hits, and the most comments, so I naturally give the topic the most attention. I’m once again hoping to begin matching that, or at least creating a strong second place, with posts on my experiences with disability.
As I offer my experiences, thoughts, opinions, and, God help you, advice on life with a disability, feel free to jump in with comments of your own. Even if you’re already doing it in other places online, as I hope to be doing soon enough, it can’t hurt to spread the conversation to a wider audience. It might help a younger (or older) person avoid some of the same obstacles you faced or connect with an activity that might fit his or her abilities that is buried in a sea – or a world wide web – of noise.