“My disability doesn’t define me.”

As a person with a disability, I was never taught how to speak up for myself. People assumed I would do what they wanted me to do. In the disability community, there’s a saying that people with disabilities take to heart: “nothing about us without us”. That phrase isn’t just a phrase to me. I take the phrase very seriously, as do my friends. To us, that means, if there’s discussion about us, we need to be at the “table” to be involved in the discussion.

When I was in my early twenties, I learned how to speak up for myself, and it has changed my life in so many ways. In my opinion, that’s much too late, because when I see other advocates with disabilities speaking up for themselves, they are sometime as young as five or six telling people about what they want, need or don’t like. One of the things that gets me excited is seeing young kids and young adults learning how to speak up for themselves

For many years, the disability community has held a meeting in Washington, DC about disability policies. Along with that meeting, people have had the opportunity to go up to Capitol Hill to advocate to our Senators and Representatives about issues that affect our lives. Going back to that principle of “nothing about US without US”,  AUCD and Think College decided a few years ago it would be a good idea to bring five teams (a student and a staff person) from five different inclusive college programs  to DC, so they could come and learn how to advocate for themselves and others to be able to go to college, just like everyone else. Teams apply to be a part of this program.  We call them Think College Policy Advocates. This year, because of the pandemic, everything was online and we were able to bring ten teams from the University of Colorado, Colorado Springs, University of Georgia, Westfield State University, University of North Carolina, Chapel Hill, Hostos Community College and City University of New York, Bowling Green State University Firelands, University of Cincinnati, Vanderbilt University, University of Tennessee Knoxville, and Virginia Commonwealth University.  

Teams met with Senator Schumer’s (NY) and Senator McConnell’s (KY) offices, the Senate leaders of the Democratic and Republican parties. Equally as important, other teams met with their Senator’s offices to tell their stories. They also met with their Representatives' offices including Representative Bobby Scott (VA) and Representative Virginia Fox (NC), disability leaders on the House side. Students shared what they wanted, hoped and dreamed for their future goals.  

We worked hard to make everyone feel included and welcome at the Disability Policy Seminar. We held several events just for the Think College teams to support them as much as they needed and wanted.

On the last day, everyone spoke about what their experience meant to them. Some things the policy advocates said:

  • “When I was thinking about housing, I was thinking about living on my own”
  • “The Disability Policy Seminar changed my life”
  • “If I didn’t come to DPS I wouldn’t know about self-advocacy”
  • “We are a great team (the student & staff)”
  • “These programs are not special education.”

As a policy advocate and a person with a disability, I am so proud of these young advocates.  I can’t wait to see where the future will take them. As one student said, “Inclusion is worth fighting for."

About the post author: Liz Weintraub has a long history of leadership in self advocacy, and has held many board and advisory positions at state and national organizations. She is a full time member of the AUCD's policy team and also the host of Tuesdays With Liz: Disability Policy For All, where she attempts to make polices in accessible language so policy is accessible to all.


National Coordinating Center