Sara Collins shares the ups and downs of her first Lobby Day experience.
Personal Story: The Heart of Advocacy
By Sara L. Collins
I am only vaguely political.
I don’t follow issues or candidates. What I remember about the mechanics of the political process is limited to the “I’m Just a Bill, Sittin’ Here on Capitol Hill” episode of the old Saturday morning Schoolhouse Rock cartoons.
So I found myself surprised at how excited I was to attend Lobby Day for the first time.
I tried to figure it out. Was I seduced by the glamour of the Hill? Was I hoping to meet a Rob Lowe look-alike, a la The West Wing television show? Or was it because, as a liberal arts major and self-professed geek, I still secretly wish I was in college, excited about this great learning opportunity?
But the closer Lobby Day came, the more my excitement was replaced by intimidation. Media-driven ideas about snarky congressional staffers swirled together with very fresh memories of a recent medical conference that made me realize that my three-month stint at the Association was not nearly long enough to qualify me to speak authoritatively about CFS. My attitude had descended from “Yea!” to “Yikes!” by the time I hopped on the plane.
Yet, by the time I headed to my first appointment on the Hill, my attitude had returned to “Yea!”
I can thank the patients and other advocates for that.
The most fascinating part of Lobby Day for me was watching, talking to and working with the people with CFS, their caregivers and physicians; noting how glad they were to see each other; soaking in their warm greetings and hugs and smiles; listening to them catch up on news of those who couldn’t make this year’s event.
I watched the veteran participants reassure the new ones, take charge in organizing battle plans for the day and readily share their experiences from Lobby Days past. I was impressed with the level of preparation some participants had undertaken, researching the congressional members they were to visit to learn their stands and voting records on health care issues.
Of course, preparation was the crux of Monday’s training session, which opened with energetic presentations by Association president Kim McCleary and Tom Sheridan, president of the Sheridan Group, the Association’s lobbying firm.
Tom noted that the CFIDS Association of America is “one of the most powerful disease advocacy organizations in the U.S.” This is remarkable, given its modest size when compared to the American Cancer Society, the American Heart Association and other national health care nonprofits.
So how would we exercise that power in our meetings? Advocates were to invite their members of Congress to join Senate Majority Leader Harry Reid (D-NV) and Representatives Sue Myrick (R-NC) and Jan Schakowsky (D-IL) in signing a letter to NIH Director Dr. Elias Zerhouni, urging him to make CFS a higher priority at the NIH and to use money from a recently created fund to support research into multisystemic illnesses that cross individual NIH institutes.
As Tom put it, “The theme of the day will be that whatever credibility gap has been around CFS is now gone, and it’s time to open the political gap and get the funding.”
Advocates who were well enough on Tuesday to bustle between House and Senate buildings were excited to carry that message to legislative staffers and to tell their own CFS-related stories. They were eager to keep themselves together, not appear as nervous as they felt, make sure everyone at the table had a chance to speak. As a group, these folks had a single mindset: to make their case for more attention, understanding and basic acknowledgement of this illness.
Throughout the day and at the celebratory reception that evening, my fellow advocates re-energized me. I heard excited reports about appointments that yielded “yes” to the request to sign the letter to Dr. Zerhouni. I listened to stories about recognition dawning on congressional staff members who realized “this could be me” when they heard about how CFS has stolen the lives of some participants. I heard about legislative staff who remembered advocates from previous visits and who welcomed the groups, asked questions, urged callbacks, took photos for the media and promised to help in any way they could.
And all throughout the day, I kept thinking about how, despite the “process” of it all, this is exactly how our country and Lobby Day are supposed to work. I remembered something Tom said during training: “You own this place! You have a right to be here! You’re supposed to come here—by design—and talk to Congress about what you need!”
Each of us is fortunate to live in a place where citizens have access to our leaders to explain their needs and ask for help.
And what a group of people with whom to ask for that help! I thank them for their passion, for caring so much (about each other and the illness) and for bolstering my faith in America. That’s a lot to accomplish in two days.
Sara Collins is a communications specialist with a history of service in the nonprofit industry. She is the CFIDS Association's public relations and event manager.