Going Down the Grassroots Road

by J. Louise Wheeler

There is definitely a difference between the atmosphere “Inside the Beltway” and outside of it. The Beltway is a big, wide superhighway that rings Washington, DC, that strikes visitors as either a screaming terror or a ridiculous way to run a parking lot, depending on the time of day. Rush hour starts at 6:00 am and is usually over by 7:00 pm. The cars are the same distance apart whether they’re stopped or crawling or going 75 mph. Inside this fire-breathing circular serpent of red and white lights lies Fun City and its near suburbs, where a large percentage of the population is made up of attorneys. Think about it.

While I live only a few miles outside of the Beltway, I seldom go inside it any more. Washington is just not a city for the disabled or the easily exhausted. There are curb cuts at the corners all right, but the darned corners seem to be a mile apart on a hot day. Look at the environs of any Congressional or Senatorial office building, and you will see very few concessions to the truth that everyone is disabled at some point during their lives, and some of them for a goodly span of years. No, apparently the extremely good health insurance our respected lawmakers give themselves does not leave too many of them in need of accommodation.

Inside the Beltway I did go, though, as if braving an alien municipality, for the PAN 2003 Forum. I am a root of grass, you see, and I will have my say as an American. I have a right to inform my elected representatives of my views, and they have the obligation to have staff members there to listen to me. Once there, in the monumental glory of the most beautiful city I know, which is at the same time one of the ugliest, democratic ideals give way to pragmatism. The Golden Rule is supreme: he who has the gold makes the rules. Numbers can outweigh money if they are large numbers and there is an election coming up. That’s why we band together. That’s why the Parkinson’s Action Network has built a grassroots network to help get the message across.

The PAN staff outdid themselves on the Forum this year, while the grassroots were enthusiastic and dedicated. It’s not a perfect event quite yet, but getting closer all the time. I enjoyed it tremendously and learned a lot about current medical research and funding needs, as well as techniques for communication with those in power. Even so, I had to miss a couple of sessions because the pace is just too much for me—and I’m only four and a half years from diagnosis, and much of the time those who are unaware of the signs of Parkinson’s Disease (PD) cannot tell there’s anything wrong with me. Others were tired, too. I have estimated the average time to recover is one to three weeks for most people with PD.

I especially enjoyed the lobbying itself, visiting, with my state team, three Congressmen’s and two Senators’ offices in one day, and actually meeting two of the representatives. As I made the case for increasing or holding steady on funding for neurological research, armed with PAN’s talking points and a previously undiscovered talent for crying sincerely at my own story, I tasted the righteousness of putting democratic principles in motion and the glory of making a difference, especially in persuading Members to join the Parkinson’s Working Group.

Now it’s my job to carry what I learned and experienced back to my state, teach others how to do the same things I have learned how to do, and help them keep in contact with one another for times when coordinated effort will be the most effective approach. It sounds kind of hard, because it is. This hard job falls to me and a few others because we have access to Washington, unlike many people with PD, who are neither participants at PAN Forums nor citizens who can bring their cause to their government in the capital. They are just too disabled or too impoverished by their disability or both.

Why would I try to do any of this? A favorite guiding principle of mine is, “From those to whom much has been given, much will be expected,” so, believing myself greatly blessed in this life, I try to live up to the obligation. I feel a calling to fight for our cure, not only for myself, but for those whose condition is too far advanced for them to travel, or to negotiate the barrier-ridden environs of the official office buildings. Others lack the funds to advance PAN Forum fees and expenses, leaving their credit card burdened with an extra thousand dollars until the reimbursement comes through. Still others are inspired to do other things with their time, things that also need doing and don’t require getting dressed up and waiting for elevators.

And so I persuade, preach, organize, write, alphabetize, count, shuffle, and deal paper in a thick layer in front of everyone who will listen to me on the days I can collect the energy to carry on. If enough of us take action, our voices will be easier to hear, and we can do important things. Don’t forget, though, Washington is seductive. If a grassroots person starts thinking that being important is what’s important, they’re not of the grass any more, they’re a big-time lobbyist wannabe. Think about it.