May 9, 2012, marked my official debut as a health care advocate! Armed with determination and personal stories of struggle, I eagerly joined fellow Dystonia warriors on Capitol Hill to add our signature twist to the policy making process.
I had grand visions of a march down National Mall or 5 minutes of glory testifying into a microphone, CSPAN rolling, as Congress strained to understand me. Instead, I stood before security guards at Congressional office buildings and navigated a maze of hallways, elevators and underground trains only to find myself huddling with fresh-faced staffers who looked like college interns. In the name of improving our health care and growing research funding, we divulged details reserved for our diaries, battling to keep emotions at bay.
Trudging around in my sneakers, I hardly felt the power advocate but with Dystonia, it’s never beauty first. I rationalized that my footgear illustrated my plight. With all the walking, perhaps my greatest accomplishment was making it through the day.
Often, it was dishearteningly clear we were playing a numbers game. “How many people have Dystonia in New York State?” Gulp. Care for some North American stats? Hard to keep tabs on a disorder that’s largely misdiagnosed.
Though I realize funding decisions require difficult choices, in my estimation, securing the health of all citizens is one of the most important functions of government. Otherwise, our freedoms are largely meaningless. We were really fighting for everyone. Take a peak at our legislative agenda.
My crash course in health care policy taught me quite a bit about the halls of power in Washington:
- Even if you inhabit the same state, Representatives aren’t interested unless you live in their district. Who ya votin’ for?
- Talk about accessible workplaces, they’re not even disabled and they have their own private train system.
- What do Senators and Representatives do all day? They weren’t in their offices, Congress wasn’t in session and it was a bit early for the campaign trail. That’s a mighty long lunch!
- Teenagers drive legislative policy. No, not their sons and daughters, their aides.
- Advocacy Etiquette 101: Don’t ask Members of Congress about their healthcare plans…funded by us. Perhaps they remember the good ole days of paid health insurance. They’ll never need Medicare?
- Crying in front of legislative aides gets you a box of Kleenex.
- Our government apparently has Cervical Dystonia, causing it to bend over towards the well-connected. Without someone in D.C. lobbying on your behalf, you’re a long shot in the legislative game.
- This was my inaugural event and I must say it was empowering to score my 2 cents for Dystonia. Maybe next year I’ll bake cookies!