Reflections on Debra Hart and the Power of Inclusion
This post was written by Denise Rozell and Liz Weintraub, from AUCD (Association of University Centers on Disability), longtime friends and colleagues of Debra.
AUCD and Think College began their partnership before either of us came to the project. Denise didn’t even work for AUCD when the partnership started, and Liz was busy on other projects for AUCD. But, at some point we all came together. With Debra’s sudden death, we have been thinking about this partnership, why it works, what it has meant, and, in particular what was so special that Debra brought to it. We could talk about the connections to the UCEDD and LEND networks that AUCD brings, the fact that we all are committed to systems change, the importance of teaching people about their government (after all, we both describe ourselves as “policy geeks”) and all of these things are true. But at the heart (or should we say “Hart”) of it– it is all about inclusion. “Nothing about us without us” and “all means all.” To us, it's that simple. So we appreciated that Debra constantly reminded all of us! Debra acted as a sort of conscience in this partnership, always reminding us, always questioning, challenging and pushing back to make sure we were as inclusive as we could possibly be. And from what we have learned since her death, that is part of what she brought to every conversation.
When asked about Debra, Liz says: One of the most important sayings in the self- advocacy movement and to me, is “Nothing about US…without US. You ask why? If there’s a discussion that’s about me or my friends, then not only do I expect to be at the table, but I demand that we are truly involved in the discussions. That’s one of the first things I teach the students, that they should be at the table and meaningfully included in the discussions. From the first time I met Deb, she and I thought about “Nothing about US…without US” the same kind of way. When we first started planning Think College Policy Advocates (TCPA), she said “don’t forget about to include the students.” I thought to myself, “that is just what I was thinking.”
Denise remembers a similar story. When we were first planning the TCPA training it was Debra who kept asking “why can’t students be included in this part or that part.” TCPA teams include a student and a staff member from an IPSE program. When Denise suggested splitting the group up between students and staff to explain the difference between “lobbying” and “educating” policymakers and what you can and can’t say if you receive federal money (which, after all, IS very confusing), Debra was the one who asked why we had to divide the group. “Lobbying” and “educating” are complicated issues for everyone. So why can’t we explain it to everyone using plain language so that everyone can understand.
She was right. And we did not separate the teams. Anything we do in TCPA includes all of the team members – students or program staff – as equal partners, who participate in this program equally to learn about policy. They both bring something unique to the team. All of the materials are in plain language so that everyone can understand. This past year the TCPA teams presented posters and concurrent sessions at the AUCD conference, in addition to participating in their TCPA training. They were included. That was Debra. Throughout building the TCPA program and the 5 cohorts we have had, Debra continued to challenge, ask questions, push back, and help us to learn from our mistakes in order to improve for the future. Always it was (and always will be), nothing about us without us.
We are tremendously proud that the Think College Policy Advocates was something that Debra was involved in building from the beginning. She served as a coach for one of the teams during our most recent program in November 2023. People have shared with us that she talked often about TCPA with pride in the days leading up to her death. She made TCPA better. And the AUCD Think College partnership, which continues, was also made better by her commitment to inclusion.
About the post authors:
Liz Weintraub, Senior Advocacy Specialist at Association of University Centers on Disability (AUCD), 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.
Denise Rozell, Director of Policy Innovation, Education and Employment Team, at Association of University Centers on Disability (AUCD). Denise works primarily on issues affecting youth in post-secondary education, employment and independent living including as the co-Director for the PROMISE Technical Assistance Center (Promoting Readiness of Minors in Supplemental Security Income). As she says above, she is a self-described policy geek, and a valuable contributor to the work of Think College NCC.