Feature Issue on Engaging Communities Underrepresented in Disability Research
Our Experience: Race and Disability
Often, when someone with a disability reaches a certain age, all services stop. Families looking for what’s next often find slim pickings. Finding a job can be very difficult because you’re depending on county job placement services that vary in quality, and social lives change because school no longer provides that framework.
Alonzo worked for several years at an outlet mall for a few hours each week, but was essentially pushed out. He is now in his late 30s, but we had been keeping in contact with a county job placement counselor, and as we started to come out of the pandemic, the counselor mentioned the Meaningful Opportunities for Successful Transitions (MOST™) program as something new in our area. Alonzo applied, they said he’d be a great fit, and it really has been a positive experience. As part of the program, he and other participants work at a pet store cleaning cages and they also help out as volunteers at community organizations, including a women’s shelter.
He is also working with a coach at Makom to develop his music skills. He has perfect pitch hearing, and often helps our piano tuner. He’s been playing the piano since he was 6 and would like to do something career-wise with music once he completes the MOST™ program.
Music is a passion for Alonzo Sullivan.
Specifically, I (Alonzo) want to work in a music store and volunteer once I leave the program. Right now, I live with parents and it’s a comfortable environment. I know where things are and I have support from my parents, but I’d like to check into living on my own.
For me (Patricia), we would like to help make that happen, but we also want to find a safe, positive living situation.
Being an African American family and having children with disabilities, we have felt as though we don’t count. That is probably why I (Patricia) feel like I have to be more of a protector. Alonzo is a twin, and I remember going to a doctor to find out what was going on developmentally with them when they were 18 months old. The pediatrician would tell me not to worry about them not hitting milestones, but I eventually went to a rehabilitation center and asked them to evaluate my sons. I often wondered if I had been someone else, would it have been different? Would I have had to figure all this out myself?
Later, when they started school in Ohio in 1988, their school wanted to put both of them in special education classrooms. As they grew and we moved to a few different states, most schools, with the exception of those in Colorado, preferred keeping all students with special education needs in one classroom, apart from their peers. Alonzo has intellectual disability along with cerebral palsy, but his twin brother, Adrien, has cerebral palsy but not intellectual disability. I had to fight for Adrien to be in a regular education classroom. I always felt like I had to advocate strongly for them, and then of course you are seen as the angry Black woman if you do. We also have a younger son and daughter without disabilities, and they witnessed how the twins were teased growing up. This has affected each of them in different ways.
Thankfully, we have a large family that helps each other, and this is a strength we rely on heavily for support.