Being a child of many siblings, I spent many a days in the back of our family van listening to CDs of music and NPR humming along as my mom or dad would drive us from one after school activity to the next. As I sang along to the popular Schoolhouse Rock song “I’m Just a Bill”, never had I imagined that I would one day too be “sitting here on Capitol Hill” nor realize how truly of a long, long journey to the capital city and long, long wait while sitting in committee for a bill to become law.
I come to Washington, D.C. as a Disability Policy Fellow at AUCD – The Association of University Centers on Disabilities. My journey here has been rooted in my experiences as a sibling to a sister with an intellectual disability, friend to disabled people, and teacher to high school students with intellectual and developmental disabilities. I hit lots of roadblocks – lack of inclusion, stereotypes, injustice – in the four walls of my classroom and wanted to understand the “system”, systems change, and challenge myself in order to challenge others for change. Afterall, the words “I didn’t go into education to teach these ‘low-caliber’ students” remains lingering in my mind from a general education teacher.
While our teacher preparation system remains bifurcated, I’ve come to learn policies have been enacted to address these very gaps and knowledge barriers for professionals working with individuals with developmental disabilities. The LEND (Leadership Education in Neurodevelopmental and Related Disabilities) programs train professionals, family leaders, and self-advocate leaders and are a part of addressing the gap in the workforce who serve people with autism and related disabilities.
I have spent the last four months advocating for the passage of the Autism CARES Act of 2019 which reauthorizes programs such as LEND and invests in tracking the rates of autism, information sharing about the needs of autism, and research to address issues of co-occurring medical complexities. Through CAREs, we are able to continue to reduce disparities, build a diverse workforce, and sustain coordinated systems of care to address the needs of autistics and related disabilities. In my long days of all things Autism CARES, I’ve often wondered about that teacher who spoke from a deficit model about my students and what impact LEND would have on her and the way she approaches disability and teaching.
I recently heard someone say, “If it doesn’t become law then what value does it have in people’s lives?” Now knowing the long, long journey to law from meeting with staffers to writing testimonies for committee hearing to engagement with our network to educate members of Congress, I would add a precursor to this question – in order for it to become law, it takes many voices and stories – your lived experiences, successes and failures, shining a light on the gaps in the system – to educate members of Congress about the issues and how a bill can in a targeted way address some of the barriers and needs in your communities.
We would not have seen such overwhelming bipartisan support and passage of the CARES act if it weren’t for the grassroots advocacy of our AUCD network encompassing many voices – people with disabilities, family members, researchers, practitioners, and more. It is because of these voices that I know that creating a space to share disability perspectives from multiple lenses and bodies will allow us to lift up real-life stories of the complexities of disability policy and its impacts on our lives. Through AUCD Policy Talk, we hope to share many voices and stories to learn from one another and advance polices and practices the improve the health, education, social, and economic well-being of all people with disabilities, their families, and their communities.