Vanderbilt Kennedy Center (TN UCEDD, IDDRC, LEND) CAC Chair at the Disability Policy Seminar

May 2, 2017

My name is John Shouse. I am the chair of the Community Advisory Council for the Vanderbilt Kennedy Center for Excellence in Developmental Disabilities (TN UCEDD, IDDRC, LEND). I count myself very fortunate to have been able to attend the annual Disability Policy Seminar in Washington, D.C., again this year, March 20-22, and to make visits to our Tennessee Congressional Delegation on Capitol Hill. As we chanted at the Seminar: "This is what democracy looks like."

Disability Policy Seminar

This was my fourth time to attend the Seminar, although I have been making "Hill visits" to our legislators in D.C. for far longer than that. Once again, we had a fabulous group attend from Tennessee. Representatives of The Arc Tennessee and some of its chapters included staffers, family members, and self-advocates. We had people from the Tennessee Council on Developmental Disabilities, the Vanderbilt Kennedy Center for Excellence in Developmental Disabilities, and the LEND* programs at Vanderbilt and the University of Tennessee Boling Center for Developmental Disabilities.

I must admit that when time for Seminar registration rolled around, I had briefly considered not attending. The overall "mood" in the country following the elections, and what we were beginning to see with proposed drastic cuts to critical lifeline programs coming out of our legislative and executive branches, had me wondering if it was even worth the time and effort to go and advocate. I'm glad those doubts of mine were short-lived.

Despite any advance concerns on my part, I'm thrilled to report that the Disability Policy Seminar 2017 was a huge success from start to finish. I loved both the fact that there was a record turnout, and also the "vibe" in the conference from the attendees- the renewed energy and motivation to get down to business and do whatever it takes to advocate for our community, and to help protect those lifeline services for people with disabilities and others of our most vulnerable citizens. That willingness to plead the case is critical, now more than ever.

After a welcome from the Vanderbilt Kennedy Center's Elise McMillan, president of the Board of The Arc of the United States, the seminar opened on a very high note with an inspiring, challenging, and animated address from Wade Henderson. He is president of the Leadership Conference on Civil and Human Rights and counsel to the Leadership Conference Education Fund. His is an important voice in the civil rights movement.

"Disability rights ARE civil rights," Henderson said. "And when you advocate this week for yourselves, you need to understand that you are advocating for ALL of us. You are advocating for us to be the country our founders meant for us to be. To be the country we know we MUST be!"

As he closed, Henderson got the attendees up on their feet with a "call and response," reminiscent of a gospel meeting. "What does democracy look like?" "THIS is what democracy looks like!" In that moment I was a true believer, and so were many of my fellow attendees, including those of us there from Tennessee.

The first two days of the Seminar included presentations and sessions with updates on specific changes to policies, and how those changes may affect our community. Other sessions were specifically targeted for first-timers to the Seminar who may never have made Hill visits before, including some of the numerous self-advocates in attendance. The purpose of these sessions was to communicate a simple message: The most important thing when meeting with legislators is to "be yourself" and tell your own story. This is far more effective than trying to become an overnight "policy expert" so you can go into the meetings and spout facts and figures and bullet points.

The real work of the Hill visits is to sway hearts and minds of legislators and their staffers, to let them know how the policies and programs they make, modify, or eliminate will actually affect the real lives of people with disabilities-the real lives of the people who vote in their districts.

The Seminar sessions ended on Tuesday with a general session that was an inspiring panel discussion that framed the entire experience as "A Call to Action." The moderator was Bill Gaventa, a well-known leader and inspirational voice in the faith and disabilities movement.

In alluding to the general malaise in the country right now because of uncertainties about what the future holds, Gaventa challenged us with these words: "This much is certain: We can be better than we seem to be in this moment." Those seemed to be just the right words to send us off to make those Hill visits the next day.

"Hill" Visits

One of the best parts of my own experience this year in making Hill visits was the opportunity to make those visits with Tom Curl, a young self-advocate on his first such trip. Tom's mother, Ann, is a former Vanderbilt Kennedy Center LEND trainee, and a seasoned advocate as well. Tom's refreshing directness about key concerns with our legislators and their staff members was a reminder to me that sometimes we need to be more willing to confront their ideas and attitudes, as long as we do it in a respectful manner. The look on our representative's face as Tom unflinchingly explained to her exactly WHY converting Medicaid to block grants was a bad idea is a sight I won't soon forget. I will have to admit that I smiled to myself as I reminded her that Tom is a constituent and a voter.

I was encouraged that as we made our way around Capitol Hill on Wednesday, from the House office buildings on the south side of the Capitol to the Senate office buildings on the north and back again, to see so many "familiar faces" from the disability community also making their own way from appointment to appointment. Having attended the Seminar for several years now, I have come to know and to forge friendships with a number of the "regular" seminar attendees from other states. To run into fellow attendees in the halls on the way to an appointment, or to see them in the bustling House cafeteria, to exchange a word or two of encouragement or to just ask how their appointments were going-I know it was meaningful and encouraging to me, and I'm sure it was for them as well. There is simply nothing more powerful than a sense of shared mission to bond our community together.

I am certain that the congressional staffers for our elected officials, as well as the representatives and senators themselves, have non-stop meetings with different groups coming in to talk about their own issues day after day, and it must surely get daunting for them at times. I believe our group is received differently.

Here's what I mean: It's one thing to listen to the issues from the trade organizations for a particular sector of industry, or from, for example, the Cattleman's Association, or the Dental Hygienists' professional organization. (No offense to any of those folks.) It's an entirely different thing for our elected officials to hear directly from constituents with disabilities and their families and those who care for them and advocate for them. I believe it is a different sort of meeting to have someone with a disability sit face-to-face across the table, and to hear firsthand those "rubber-meets-the-road" stories about the issues directly impacting quality of life for our most vulnerable citizens every day.

As for our Tennessee attendees, the reports I have heard from one and all were that their meetings went very well. With so many people telling their stories so passionately and so well, I am optimistic that hearts and minds were indeed changed on the Hill on Wednesday of Seminar week. With so much at stake, there has never been a more important time. The challenge is to know that "the work" is far, far from over. In many ways, it's just beginning, both in D.C. and back here at home as well.

Many, many thanks to The Arc of the United States, AUCD (Association of University Centers on Disability), AAIDD (American Association of Intellectual and Developmental Disabilities), SABE (Self-Advocates Becoming Empowered), NACDD (National Association of Councils on Developmental Disabilities), and UCP (United Cerebral Palsy) for sponsoring, organizing, and conducting the Seminar again. Also thanks to The Arc Tennessee and the Vanderbilt Kennedy Center for making it possible for me personally to be part of our Tennessee team once again for this most important effort.

John Shouse is president of The Arc of Tennessee Board of Directors, chair of the Vanderbilt Kennedy Center Community Advisory Council, and parent of three children, including a son on the autism spectrum.

Pictured top of page (left to right): John Shouse, Grace Cronin, Ann Curl, Congressman Marsha Blackburn, and Tom Curl.