24 Hours in DC

24 Hours in Washington, D.C.

or How I Learned to Stop Worrying and Love Advocacy

by Brian Moore

So, it’s been about 24 hours since returning from my first Buddy Walk on Washington. This introvert is still recovering from 2 days of no sleeping or eating, but my mind is still awash in the glorious chaos that ensued upon my arrival.

The level of emotion I experienced was unexpected. Whilst sitting in a room full of people, many of whom are most likely out of their own comfort zones, it’s sometimes difficult to keep it together. When self advocates like Sara Wolf and John Anton step up to the podium, their inspiration makes me feel inadequate and humbled. I hope someday people will see me in a similar light and be inspired - not for me, but for my daughter and the sons and daughters to come. Those who, hopefully, won’t bear the brunt of a society who  sees them as a burden, an expense, or a joke.

The first evening was somewhat of a reunion for some. 220 advocates from across the U.S., coming together in a banquet room in our nation’s capital. For others, like myself, it was all new. Being the only advocate from Georgia, I was seated with the group from Jacksonville, FL. I didn’t know it at the time, but they were to be honored later that evening as Buddy Walk of the Year. Their 2012 Buddy Walk had 5000 people in attendance. A remarkable number to be sure. As I made small-talk with my tablemates, Julie from NDSS appeared out of nowhere. She quickly introduced herself and indicated that I had been volunteered, as the only person from GA,  to do an on-camera interview for the WSB-TV Atlanta market. After a short-lived protest, I agreed. After all, I was there to affect change. I was pulled out into the adjacent hallway, introduced to camera man, then quickly wired with a microphone. After some camera and lighting adjustments, I took a few deep breaths and said, “go”. I honestly don’t remember much from then until I was seated once again at my table. A portion of the interview did air on WSB-TV the following day as part of a small story about The Buddy Walk on Washington. I got a chance to watch it once before it mysteriously disappeared from the the DVR.  Shortly after the interview, I finally got to meet Sara Weir, head of advocacy at NDSS, then had a nice conversation with NDSS President, Jon Colman.

After the interview, there was a couple of hours of going over the legislative agenda, followed by a presentation by the consulting company who arranged our legislative meetings. This session was followed by an cocktail hour, where I ended up chatting more with the leader of the Jacksonville D.A.D.S. chapter, then an awards dinner - where the Jacksonville group received their due. Because they were receiving an award, I was not able to sit with them, so I ended up at a back table with a couple of lovely characters from Michigan. Let’s just say, we were the last to leave and ended up outlining a plan for a bus tour from Washington state to Washington, DC. Enough said. After walking my dinner companions to the hotel lobby, I headed to the hotel bar for a nightcap. As I strolled in, I saw the Jacksonville contingent relaxing with several people from NDSS. They quickly invited me over and spent a couple of hours mixing it up. All too soon, it time to rest up for the day ahead.

Just when I thought I pulled myself together, another day brought yet more surprises. I woke up early, donned a well-fitting suit, and broke out into the bitter, windy cold. I took the Metro up to Capitol South and briskly walked up to Capitol Hill. As I came upon the Capitol Visitors Center at the previously designated time, I noticed only a couple of dads waiting by the entrance. We all agreed that 7:30AM had been the designated time,  however the CVC doesn’t open until 8:30AM. Steve Huffman, one of my fellow early arrivals, gave Sara Weir a ring to find out what was going on. She indicated that we should meet her at the side entrance to the Capitol, where we should be able to gain entry with her.  A few minutes later, we were walking through security checking in, and headed to our conference room for the morning's activities.  Soon, my fellow advocates began arriving. One by one, legislators filed in to our awards breakfast, expressing their personal commitment to my daughter and her quality of life. People whom I’ve never met, but have been touched by parents around the country or by children of their own. These are not photo-ops. These are real people - there is no doubt. A congressman from New Jersey happened to be walking by, listened for a bit, then came in to announce he would be supporting the ABLE Act. Our presence alone made this happen.

As each speaker took center stage, I couldn’t help but glance up at the clock, waiting for the dreaded moment when I would have to stand up and make my way to my first meeting, with Senator Johnny Isakson. This was the first time I’ve met with members of Congress. It was so far out of my comfort zone, I’m pretty sure I had an out of body experience. I can barely recall my conversations or how I was able to navigate the tunnels beneath the Capitol Hill complex. I’m not even sure who that guy was.  This is the guy who could never talk to girls and could create the mother of all awkward silences with no effort. Luckily, my dinner mate from the night before was heading to her meeting at the same time, so we made our way to the Russell building together.

I arrived at Senator Isakson’s office early and was greeted warmly by Betsy. If you call the Senator’s DC office, she’ll likely be the one answering the phone. For the first time, it struck me that these are just people, with husbands, wives, children, and grandkids. I felt at ease for the first time since my arrival. At the scheduled appointment time, a young man named Chance walked out to greet me. Keep in mind, that while Congress is in session, it’s unlikely that you’ll actually get to meet directly with a Member of Congress. No worries, though, because staffers are the ones who know all the details. Ideally, you’ll be meeting with a staffer who works exclusively in the area related to your reason for being there in the first place. In this case, Chance is a legislative correspondent. An LC is typically the one sending back responses to questions. I had nice conversation, which last about 40 minutes - a pretty good amount of time. I talked a bit about myself, my family, why the ABLE Act and Down syndrome research are important to me. I made it personal. He was engaged, listening intently, making notes and asking questions. While I didn’t get yea or nay, which I didn’t go in expecting to get right away, Chance was excited that the Senator was now on the Senate Finance Committee and could potentially bring these issues to the table. As the meeting ended, I felt I satisfied and ready for the meetings to come. I think I may have shared an elevator ride with Senator Chambliss on my way out. People don’t always look the same in person as they do in photos or television. I was still pretty nervous regarding the whole experience, so I didn’t say anything. If I could go back, I might have. 

My next meeting was with my representative, Congressman Rob Woodall. I made my way back through the underground tunnels, from the Russell building to the Longworth building, on the other side of the Capitol. Along the way, I stopped for lunch at the Capitol Visitor Center, dodging children of all ages, presumably on school outings. Unfortunately, my nerves prevented me from finishing my lunch, so I continued on to Woodall’s office. I arrived quite early, but not early enough to do much of anything else. Unfortunately, that meant missing the NDSS press conference. I hung out in the hallway his office for a while, going over notes, posting to Facebook and catching up on my Twitter feeds. After a while, I gathered up my things, entered his office and announced myself. I exchanged courtesies with the staffers in the office and took a seat. As my appointment time approached, I was startled by Congressman Woodall jovially entering from the hallway, introducing himself with an open hand. His presence at the meeting had not been confirmed, so I was quite excited to see him. He ushered me into his office and introduced his Legislative Director, Janet. The Legislative Director supervises the legislative staff and really sets the legislative agenda. Getting to meet with both the LD and the member of Congress was pretty cool.

Interestingly enough,  Rep. Woodall had already familiarized himself with my agenda and wasted no time driving the conversation.  In previous correspondence, Rep. Woodall, he expressed opposition to the ABLE Act in that is was a further complication of the tax code. In talking to him here, it was clear that he didn’t have all the details. After filling him in and explaining how it would help my family, he indicated that he hadn’t heard my point of view before and would take another look. He was very easy to talk to, very straightforward, and asked a lot of questions. Whether or not he ends up supporting ABLE, I felt the meeting was very positive. 30 minutes went by too quickly and before I knew it, I was saying goodbye and headed for my final meeting.

With two meetings under my belt, I was beginning to feel like a pro. I retraced my footsteps back to the underground tunnels. A I passed from one tunnel to another, I heard a begrudging, “Can I help you?” from a gruffy security guard. I indicated that I was going back the way I came, to which he replied, “Only staff. You need to go through security.” Odd. So, I started for the end of the security line. Unfortunately, it’s length was not conducive to my making my meeting on time. I headed up the stairs to ground level and broke into sunlight for the first time that day. It turns out the President was on the Hill, so security had been tightened at the Capitol. I got my bearings, then started a brisk walk back to the Russell building for my meeting with Senator Chambliss.

Taking the outdoor route was a wise choice, as there was no line to get through security. I made it into the building quickly and rode the elevator to the fourth floor. Again, I was a bit early. Rather than waiting in the hall, I decided to go in, announce myself and relax on the couch. I was a bit exhausted at this point and was ready for the day to be over. This meeting was scheduled with the Chief of Staff, Charlie. After what seemed an eternity, Charlie bustled in to greet me. I followed him out of the office and down the hall to another office. We walked through what seemed a maze of crowded rooms to his office in the back. We sat and he gave me the nod to start in with my spiel. As I finished up, he noted that a woman from Rome had been in earlier, also talking about the ABLE Act. His take on it, was not dissimilar from those before him. However, he was more direct in that he didn’t think it could ever get to vote as a stand alone bill. However, he thought it had a good shot at being part of a tax reform bill. He encouraged me to keep him updated regularly on the support the bill was getting, but was adamant that best course of action was within a larger bill. He then suggested that I should think about getting into radio. We spent a few more minutes chit-chatting along those lines, before walking out together and parting ways. Thus, ending my day of advocating on Capitol Hill.

Once more, I found myself outside on beautiful spring day. I again got my bearings and decided it was time to make my way to the airport. There was no re-grouping scheduled and I didn’t have the energy for further exploration. I walked back to the Capitol South Metro, transferred at L’enfant Plaza, arriving a few hours early at Reagan National. I was finally able to relax and eat more than a few bites. Once I got through security and arrived at the gate, I ran into David Tolleson from NDSC. We caught up a bit, since we hadn’t talked in awhile. I had been too exhausted to make it to research panel he had been part of earlier in the day. Boarding time came and the rest, as they say, is history.