On June 18, 2024, the White House hosted an Olmstead 25th Anniversary Observance to commemorate the Supreme Court decision (Olmstead v. L.C.) that ruled institutionalizing people with disabilities who were capable of community living was a violation of the Americans with Disabilities Act (ADA). One of the speakers at the event was Tony Coelho, the former congressman and chief author of the ADA, who shared his basic philosophy of life: “Give me the right to fail, but in order to do that, give me the opportunity to succeed.”
Gyasi Burks-Abbott, MS
This philosophy is encapsulated in the phrase “Dignity of Risk,” which I often hear in my work as a disability advocate. And it makes perfect sense. Personal growth often comes from experiencing failure and learning from mistakes. Why should things be any different for people with disabilities? That doesn’t mean we don’t need guidance and support – a safety net while still trying to get the hang of the high wire act.
When it comes to the phrase “Presume Competence,” I think it’s important to note that being competent doesn’t mean I’ll never mess up; it means I’ll always be teachable. Don’t throw your hands up at the first sign of trouble. If I’m doing something wrong, tell me how to do it right. When I look back on the missteps I’ve made in my life, I can contrast the people who were willing to offer me some grace and give me another chance with those who seemed to immediately write me off as a lost cause.
Independent living is another concept that needs to be unpacked. Though I live alone and do many things for myself, I still depend on other people for assistance, whether it’s the maintenance workers I call upon when something breaks down in my apartment or the accountant I go to for my taxes. And this is not because of my autism. Disabled or not, no one is completely self-reliant. We are all interdependent, and the real trick to successful adulting is knowing when, how, and who to ask for help.
My mother helped me hone my adulting skills by opting for Power of Attorney as an alternative to guardianship after I turned 18. With my Power of Attorney, my mother had the right to speak for me even though I was an adult. However, she continued, as she had throughout my childhood, to encourage me to speak for myself. Whenever we had business with social security, for instance, I always made the call. My mother would prepare me and give me some notes; during the call, she’d feed me lines while I relayed back what the person on the phone said.
This system usually ran smoothly. It was easy to tell my mom what was said when there was a pause in the conversation, and I could also repeat things in a way that seemed natural like I was just verifying that I’d heard correctly. But sometimes, there would be a glitch. Maybe the person on the phone would say something my mother disagreed with, or they’d take issue with what my mother was communicating. There’d be an impasse, but my mother always hesitated to take the phone. She really wanted me to learn how to handle things myself.
As awkward and frustrating as these exchanges sometimes were, they prepared me for when my mother would no longer be there to feed me lines or take the phone from me in a pinch. As the old saying goes, my mother didn’t just give me fish so I’d eat for a day; she taught me how to fish so I could sustain myself for a lifetime. In the seven years since my mother’s death, I’ve often marveled at the previously unfathomable things I’ve managed to take care of on my own. But sometimes, in moments of extreme stress, I might forget just how much I’ve grown.
I compare myself to the elephant that is tied to a pole when it’s young and tries to pull away to no avail. By the time the elephant is big, the tether has been internalized. The elephant could just easily walk away from the pole, but it won’t because of the memories of when it couldn’t. Like the elephant, I sometimes get stuck in the past. I forget how much I’ve developed over the years, how I’m far more capable than I was when I was younger.
July is Disability Pride Month, and this past July, I was reminded of my value to the disability community. I attended the Annual Conference of the National Association of Councils on Developmental Disabilities (NACDD) in DC, where I was inducted into the Self-Advocate Leadership Circle. I was nominated for this honor by colleagues at the Massachusetts Developmental Disabilities Council, where I served as Chair of the Policy Committee.
There’s some debate over whether the phrase “Self-Advocate” is a misnomer since most people with disabilities are not advocating simply for themselves. At the Conference, one of the NACDD administrators suggested calling people with disabilities “Subject Matter Experts.” This idea aligns with my point in an Autism Spectrum News article that Self-Advocacy is my field of expertise. I don’t mind being called a Self-Advocate—if it’s understood that most of what I advocate for will never benefit me personally. What does benefit me personally is the sense of belonging and purpose that comes from being part of something greater than myself.
A highlight of my trip to DC occurred before the NACDD Conference. A group of us joined the National Council on Independent Living for a rally in support of their 5 for 5 Campaign (referring to $5 million for the 5 core services provided by Independent Living Centers across the country). A heavy rainstorm followed us down Pennsylvania Ave., at one point pummeling us with powerful raindrops that seemed to penetrate my umbrella. But we soldiered on chanting, “We’re here. We’re loud. Disabled and proud!” and “5 for 5.” We also improvised. “We’re here. We’re wet. Our needs must be met.”
Miraculously, the weather cleared, and the sun came out as we neared the Capitol just in time for the rally. But for me, the most powerful image was a group of disabled people, some with mobility impairments, making their way through a torrential downpour while managing to maintain their resolve and good humor. It perfectly encapsulated the strength and resilience of the disability community.
Gyasi Burks-Abbott, MS, is on the faculty of the LEND (Leadership Education in Neurodevelopmental and related Disabilities) Program at Boston Children’s Hospital and UMass Boston’s Institute for Community Inclusion. He serves on the boards, committees, and commissions of many autism and disability organizations; and he’s written for several autism and disability-related publications. Gyasi tells the story of how he became an Autism Self-Advocate in his book My Mother’s Apprentice: An Autistic’s Rites of Passage. He can be reached at burks1900@yahoo.com.
