What do you do when you hate your disability and are suddenly surrounded by hundreds of other people with disabilities? That’s what I was trying to figure out while staring at my scooter’s steering wheel during the opening plenary of the annual NCIL conference in Washington, DC.
Everywhere I looked in that conference room I saw wheelchairs, scooters, canes, deformed limbs, and hearing aides. It made my stomach churn to think that I tried so hard to divorce myself from any notion of having a disability, let alone the idea of a broader disability community. My hands started to tremble lightly as I realized that the people around me were actually friendly, but still I felt out of step with their general air of solidarity. The voice in my head that always said to me “I couldn’t possibly be one of them” was louder than ever. I just wanted to jet out of the conference room and find the quickest way back to Baltimore.
NCIL organizer Mark Derry’s rallying cry silenced that voice as he boomed, “What do we want?” and the whole room answered “Freedom!” Mark was different from the other talking heads on the panel. Instead of talking about how our friends Senator Harkin, Secretary Sebelius, and President Obama were our greatest allies on Capitol Hill, he was vociferous and pissed off. He showed me in that moment that I could use all of the anger I’d bottled up over the years to make a difference. It was the same ethos that attracted me to punk rock, but with a sense of earnestness and relevance that I’d never seen before.
After bumping my scooter into wall after wall, slamming my foot into a restaurant doorway, and swerving past the potholes of DC’s streets, it was time to bed down for the night and prepare for the next day’s protest.
In the hotel lobby as we were leaving for the march, I met a guy named Barry from Savannah, GA who also had CP. I told him that my sister lived there and that I’d been feeling very isolated before I came to the conference. In his comforting southern drawl, he explained that he felt the same way when he was eighteen and that it was completely normal, whatever the hell “normal” meant.
As we filed into line and headed from the Grand Hyatt to Capitol Hill, I began to think of what my disability meant to me emotionally and politically. I have one glaring thing in common with thousands of people. People who’ve been treated like invalids and told they were stupid, who’ve been stared at, rejected, and ostracized because of something they couldn’t control. It’s all I can do just to be a part of the independent living movement. I may not always follow NCIL’s party line, but at least I know there are more people like me.