The Alliance Against Seclusion and Restraint celebrates our fifth anniversary on Tuesday, March 26th. As part of the celebration, we asked a few of our volunteers to share their stories about how they became involved with AASR. Be sure to join our special live event on March 26th at 3:30 (ET). Also, please consider donating to our fifth-anniversary fundraiser so we can continue this vital work.

I have been blind since birth and have been involved with blindness advocacy for the past 20 years. In 2014, I obtained my Ph.D. in social psychology because I wanted to use social science research to make life better for blind people. Eventually, though, I realized that people with all types of disabilities have common rights and struggles. So, I decided to learn about the experiences of those with different disabilities from my own.

I first heard about restraint and seclusion in 2016. I found a 2009 report detailing how often kids with disabilities were subjected to “aversive interventions for behavior management” (i.e., punishments) such as corporal punishment, restraint, and seclusion. Of course, I was horrified.

In the coming years, I would learn far more about how my siblings with intellectual and developmental disabilities are treated in our world. At an inclusion summit in 2017, I met the mother of Ethan Saylor, a young man with Down syndrome who was killed by off-duty police just because he tried to see the same movie twice without realizing he needed to buy a second ticket. I also learned from autistic bloggers about the “therapies” autistic children are subjected to and the frequency with which parents kill their own disabled children.

Then, in 2018, I started a four-year job co-directing a pre-employment transition program for blind youth in Virginia. Several of our students were neurodivergent. I began working with neurodivergent youth who were profoundly misunderstood by their peers, by their teachers, and, sadly, sometimes by their own parents. They shattered my misconceptions about neurodiversity and helped me understand the importance of co-regulation and relational safety. I watched my students blossom when their authentic selves were appreciated and when their difficulties were met with compassion rather than frustration. Eventually, I started to see parts of myself in some of these young people. I now recognize that I am likely neurodivergent myself, though I don’t fit neatly into the diagnostic categories we have created.

In the course of my learning and self-discovery, I was eager to find and advocate for real solutions that work. It was obvious to me that traditional ways of interacting with neurodivergent and other disabled people, in addition to being harmful, simply do not work to promote learning or cooperation. I scoured the internet for answers. Eventually, I stumbled upon a Facebook page by occupational therapist Greg Santucci. From Greg’s page, I first learned about AASR.

My husband and I have annual charitable giving goals. After following AASR on Facebook for a while and reading about their work, I decided to make AASR one of my monthly charities to give to. Guy contacted me after I had been a donor for a while. We chatted, and I decided to become an AASR volunteer.

I’m so grateful to be part of an international community of colleagues who care about changing systems of oppression. Though I recognize that I cannot stop the things my disabled siblings have already gone through, at AASR, we can work together to prevent trauma from happening in the future. I’m excited to see what the next five years bring.