Feature Issue on Engaging Communities Underrepresented in Disability Research

My parents divorced when I was 3 and my sister was a newborn, and my mother raised the two of us. Until I was in about first grade, we lived in shelters, motels, and for a couple of years, with my grandparents. When we were living in motels there was no refrigerator or hot food, so we ate out of a cooler. My mom was trained as a dentist but had physical disabilities that made it impossible for her to work, so we lived on disability payments.

After a few years, we were able to get into a publicly subsidized apartment. Our mom surprised us with this. We went to a sleep-away camp for underprivileged children and when we got back, we had this apartment. It was jaw dropping to not all be staying in one room and we had a refrigerator and a stove. It was a lot to take in all at once.

Getting stable housing was the first priority, but once we had that, it was easier for my mom to think about getting me assessed for services. This was a heavy lift in the early ‘90s because autism wasn’t well known. I had a number of diagnoses from different therapists, and at one point we lost my Social Security disability benefits because an interviewer thought I wasn’t disabled enough. At a different point, I had to fight to be placed in more advanced high school classes and applied to a selective liberal arts college over the objections of a high school guidance counselor who thought I belonged in a lower-tier school. Many times, in these conflicting scenarios, I felt that race played a bigger role than my disability. I have a melting pot family and I identify as both mixed race and Black. During middle school, I was placed in a residential facility because others decided my presence was a discipline problem, even though I was the one who was frequently bullied.

For about a decade I worked as an administrative assistant and patient services representative for a large teaching hospital in New York. I saw a lot of patients from underserved communities and it drove home for me that people’s experiences and context outside of those moments was really what made the biggest impact on their health and how sick they were when they got to us. There was a patient, a new referral for cervical cancer, who had a very advanced tumor because it had been missed for years by clinics providing her care. The surgeon came out and said to me, ‘This is what cervical cancer is in America,” and that really stuck with me. The surgeon took a lot of referrals as part of the hospital’s community service work from very low-income communities, many of them women of color. So even when we gave them the best care, there was a lot more behind the scenes that really impacted how sick they were when they got to us. This played a role in my decision to go into public health.

Greg Robinson of the Autistic Self Advocacy Network

I went on to earn a master’s in public health at University of Pennsylvania (I’m still paying off those loans), but even though I present as needing few supports, navigating administrative tasks such as applying for work or housing remains difficult for me. While I was living with my mother, I was able to volunteer in the community and help her with a lot of lifting and doing things around the house, and I relied on her for driving and helping me with applications for things and making sure I had a pressed shirt for work. While working at the hospital I got a notice that with my hospital income, my mom would lose her subsidized housing if I continued to live there, so I had to navigate some sketchy situations with apartment roommates before I lucked into moving into an apartment with friends.

Today, I live with my partner in a two-bedroom apartment with a stocked kitchen, and I love to cook. Being able to do what I want with food means independence for me and it’s a huge part of my life as an adult.

My work also circles back to the housing insecurity we faced as a family. Our most urgent work at ASAN right now is centered on the final HCBS settings rules, which will provide supports for people with disabilities outside of institutions. The settings rule has been a long time coming, and it formalizes the rights people have and the types of providers that qualify. It will mean that people living in group homes will have the right to have visitors when they want, get food when they want, and have a person-centered plan for a meaningful life of their choosing. Even with the provider shortage, these rights are important.

There is a lot we still don’t know about autism. I am one of the few people in my generation to be diagnosed as a child, and many autistic adults today still don’t have a diagnosis, so there is a huge amount of unmet support needs. There are disparities in who gets diagnosed and with what, and even with a diagnosis many people aren’t aware they can get services to help support them. We need to research the disparities, but also build the infrastructure to address what we find.