3/9/2012 9:58 AM
By Ken Woodhouse
When I first heard about Lobby Day, I knew I wanted to go. But there was even more to it than that. Knowing that I could go made it even more important that I did go. Even as a newcomer approaching this Lobby Day with high expectations, I was certainly not disappointed. Not only did I meet some incredible people—fellow patients, parents, and staff and board members from ACHA and Mended Little Hearts—but I also had the opportunity to interact with some great Congressional staff members on behalf of the CHD community.
The night before Lobby Day, I attended the welcome reception and had the opportunity to talk with the father of a CHD patient; he and his wife have been coming to Lobby Day since the very beginning. As a newbie, I had to ask his thoughts on the tough question that kept nagging at me: “In this crazy town [Washington, D.C.] with so much going on and so many competing priorities, is our grassroots lobbying effort really making a difference?” He chuckled, knowingly, and gave me the answer I was hoping to hear: “Yes! It’s not easy and it takes consistent, ongoing work. But we have definitely made progress.” Little did I know at the time that the very next day—my first time lobbying on Capitol Hill for anything—I would already feel like I had made a difference and was having an impact.
Prior to attending our first formal meeting of the day, my fellow advocates from Illinois and I attended Senator Dick Durbin’s morning constituent coffee. As you may know, Senator Durbin is one of our champions, as he successfully supported the Congenital Heart Futures Act into law, and he is most definitely an advocate for the cause. When we met the Senator for our photo op, we introduced ourselves and told him why we were there (in photo, left to right are myself; Lena Morsch, patient/advocate; Senator Durbin; Betsy Peterson, founder, The Children's Heart Foundation; and William Foley, executive director, The Children's Heart Foundation). Before we could say another word, he enthusiastically thanked us and reminded us how important it was for us to be advocating for the CHD community. It was almost as if he were lobbying himself!
My three formal Congressional meetings ran the gamut—from thanking Senator Durbin’s staff for their leadership and ongoing support of this important issue; to directly but delicately making our case to Senator Mark Kirk’s staff in the midst of the Senator’s own health issues; to a one-on-one meeting with Representative Mike Quigley’s legislative assistant, who unexpectedly shared her own very personal story and connection to CHD. It was right then and there that I realized my solo visit to Representative Quigley’s office may have had the biggest impact of my day. This staff member and I have exchanged a couple emails since that meeting, and she has invited me to stay in touch with her going forward on this important issue. In addition, she put me in touch with her colleague in the Representative’s district office, with whom I am also hoping to establish a relationship.
Capitol Hill can be an intimidating place. In the days leading up to my trip to Washington, I had to laugh when I read through some of our prep materials, which stated, “Being on Capital Hill is likely to remind you of everything that you love and hate about the current administration and policies.” As someone who studied public administration in grad school, I was well aware of this, and I’ll admit there was some truth to that statement. However, the positive energy that was present among my fellow CHD advocates that day—an energy I felt even during my solo Congressional meeting—provided the encouragement and motivation that was necessary to do what we went there to do.
I am grateful to the new friends that I made during my trip, not only for their impact on me personally, but also for their unwavering dedication to this cause—you are all an inspiration! Whether or not you were with us in Washington, I truly hope that you will continue to find ways to share your stories and make your voices heard. I believe that we have some great momentum going, but we’ve got to keep it up!
Ken Woodhouse was born in 1981 with tetralogy of Fallot and had his first (and, so far, only) open heart surgery at the age of eight months. He is an avid cyclist, having completed numerous multi-day rides, including the 7-day, 560-mile AIDS/LifeCycle ride from San Francisco to Los Angeles in 2010. Ken writes his own blog about living a healthy and active life with CHD.