Years ago on PBS I used to watch a show called ZOOM. This was a few years ago, so what was unique about the show was the online content. Kids were encouraged to send in emails to the cast about do-it-yourself science experiments, word games, magic tricks, and challenges. This critical online component of the show was stressed in a line from the show’s theme song: “We’re all hooked into one world now!” After the PAAC Leadership conference the week before last, I feel that “We’re all hooked into one world now!” very adequately sums things up. Certainly we all had a conference call a month before. And there was the Facebook group. Through friending everyone in the Facebook group I realized that I was indeed going to be working with some very cool and interesting people. None of these preliminaries however had the same impact upon me as the conference itself.
There’s something to be said for PPMD getting us all together from all over the place. But why was the conference so enriching? The conversation. How so? With my peers on the PAAC, I found we could go deep with conversation very quickly. Certainly I knew some of them already. Ben and Mario are old friends of mine. But even so, I felt more at ease in conversation with them than ever before. Why? We all lead very different lives, and yet we all face the same life struggle. And here we were at an event put together to bring about a merging of minds on how to best navigate this shared life struggle. There was a lot to talk about and a two-year long agenda to piece together, but we managed to sort through it all between Friday night and Sunday afternoon. Shared experience of a world not always suitable to our needs allowed the conversation to go so deep so quickly. I could bring up struggles with paratransit transportation, SSI (Social Security Insurance), and finding a PCA without having to proceed through a litany of definitions and abbreviations. This was the best thing. I could talk about how things could be better for those with DMD/Becker’s without having to explain myself. It was liberating, refreshing to be invited to become part of a group of sharp-minded, independent individuals living with DMD/Becker’s, given the opportunity to set our own goals in terms of an advocacy agenda.
For me, the personal conversations during breaks and after meetings though were some of the most enriching. Right now, I’m in the hunt for a PCA. Prior to the conference, I had not a clue what I was doing. Now some things are a little bit clearer. A little bit. Not a whole lot. I suppose what I mean to say is that I now have a reliable support network to go to for advice. I didn’t really have this before the conference. A number of years ago, as a junior in college, I spent a year studying at the University of Oxford. During the course of the year, I took that transatlantic flight 8 times with the help of my dad. After all that traveling, I became comfortable enough to travel on my own. I have since made two separate trips to England all on my own. This made me the travel guru of sorts. Though I didn’t get to talk as much about my travel experience as I would like, I intend to continue the conversation through the Facebook group. This is the hub of our support network, where the advocacy agenda is developed further, our own special place in cyberspace. We’re all hooked into one world now