National Down Syndrome Congress Advocacy Day on The Hill

Karen MacDonald

August 20, 2012

When I applied to become an assistant at L’Arche and read in my role description that I would “advocate for and with core people for the rights they deserve,” I gave careful consideration to the various ways in which I might fulfill this crucial aspect of my role.

Not for one second did it occur to me that this might involve heading directly for the political heart of Washington to confront Congressional policy-makers about what they should do better.

But, on July 19, I found myself in just that position! In the early hours of the morning, I traveled with L’Arche companions Dottie Bockstiegel, Charlotte Collins, and Fritz Schloss to the U.S. Capitol for the National Down Syndrome Congress Advocacy Day on The Hill.

“How did I get here?” I wondered, both exhilarated and somewhat petrified (let’s be honest!), as I made my way to the floor of the House of Representatives to gather with groups and families who had come from all over America to represent their States. We all assembled together, ready to fight for our common cause, before splitting up for individual meetings with legislators in the Senate and House offices.

Fritz and Karen — Fritz Schloss and Karen MacDonald celebrate his birthday. Thanks to advances in health, education, and legal advocacy, people who have Down syndrome live more than twice as long as they did just 30 years ago. Photo courtesy of Karen MacDonald

Let me enlighten you as to how I actually did come to attend this event. A few months earlier, the opportunity had arisen to organize a group from L’Arche to support Fritz in promoting his cause at the NDSC Advocacy Day. Initially, I felt reluctant to take on any of the responsibilities involved. With no advocacy experience and a shockingly limited understanding of the American political system (I’m English, don’t judge!), I was fearful that my involvement would lead to disaster. But then I reflected on the endless ways in which Fritz had supported me. Let me share just one example:

There was once an occasion when, after learning some very sad news, I came home feeling disgusted with the world. I wondered how people didn’t give up on life when evil could manifest itself in such cruel and devastating ways. When I walked in the door, Fritz saw me and immediately came toward me. Without saying a word, he put his arm around me and looked into my eyes. He calmly and quietly held my gaze for a long time. He smiled at me, not happily or sadly, but peacefully. A bright and determined hope seemed to shine forth from his eyes. We stood together for a few moments.

Suddenly, I found myself smiling back at him. I wasn’t sure how it had happened, but I felt instantly restored with hope and determination. I felt a grateful love for my housemate who had silently and sensitively reached out to me in my struggle. How could I give up on the world when the people I love keep going? We owe it to each other to fight together through the terrific highs and lows of life, never letting one another down.

My involvement in this event wasn’t for myself alone; it was to stand side-by-side with Fritz. I knew that, together, we would rise to the challenges ahead. And so, the adventure began:

DS Conference Jim Webb — Senator Jim Webb (D-Va) meets with L’Arche advocates Charlotte Collins, Dottie Bockstiegel, Fritz Schloss, and Karen MacDonald. The advocates encourage Webb to sign on to four bills to improve the quality of life for people who have Down syndrome. Photo courtesy of Karen MacDonald

On July 19, our group of four met with legislators representing Senator Jim Webb, Senator Mark Warner and Congressman Jim Moran.

At our three meetings, we told our story and described our experiences at L’Arche; we shared pictures of Fritz’s friends and family; and we argued (in Dottie’s case, very fiercely!) the case for four bills that would improve significantly the lives of people with Down syndrome:

1. Trisomy 21 Research Centers of Excellence Act

2. Trisomy 21 Research Resource Act (to increase Down syndrome-related research funding)

3. Keeping All Students Safe Act (to prohibit the use of restraint, seclusion, and aversive interventions in public schools)

4. Achieving a Better Life Experience (ABLE) Act (to establish tax-free savings accounts for individuals with disabilities)

Furthermore, in true L’Arche fashion, we also extended invitations to dinner at our homes.

It is fair to say that we were all exhausted by the end of the day. We’d learned and memorized detailed information to prepare ourselves to argue and advocate for our cause. We had wound our way through the labyrinth of tunnels and staircases connecting the buildings on Capitol Hill, navigating our way around unfamiliar territory. We had poured our energy and passion into our meetings to do justice to what we believed in. And, as the only people who turned up to represent Virginia, we went home satisfied and proud of our efforts.

When we met with his representative on July 19, Congressman Jim Moran had already co-sponsored three of our four bills. To our joy, he has now co-sponsored the Keeping All Students Safe Act, making him a co-sponsor of all four bills.

After our day on Capitol Hill, our fellow housemates at Highland house greeted us home with energetic warmth and enthusiasm, gleefully crying, “We missed you!” Indeed, it seemed like a long time since we had stepped out the front door that morning.

But we’d do it all again, without a doubt.

Karen MacDonald hails from Cheltenham, England, and previously spent five months with the L’Arche Les Trois Fontaines community in Ambleteuse, France. After graduating from University College London, she came to Highland house in September 2011 and is currently the home-life leader there.