by Gail Fuller, Program and Communications Director, Disability & Philanthropy Forum
July 6, 2022
“We don’t talk about Bruno, no, no, no!” In my family there is a long list of Brunos.1 Their disabilities range from hearing loss to chronic illnesses (e.g multiple sclerosis, diabetes, etc.) to neurodivergence, including autism, attention-deficit hyperactivity disorder, dyslexia, Down syndrome, epilepsy, and chronic mental health conditions. They lived in the shadows in my family. For generations, their voices were silenced. There were never discussions, just whispers and sometimes dehumanizing language by the elders: “Boy, you better stop that twitching!” “Ain’t nothing wrong with that child that a good whooping wouldn’t cure.” Despite this, there was never a doubt that they were deeply loved and often guarded against the outside forces that thought less of them. They grew up in a time when our family did not talk about disability. They didn’t know then how race and disability are inextricably linked. Today, there are 61 million adults in the United States with disabilities. One in every four Black American experiences a disability. I am one of them.
As a child (and some would say as an adult), I was considered moody. The moodiness was often attributed to my asthma or eczema, which caused my mother and sisters to place socks over my hands, so I didn’t scratch my face bloody. Some family and friends joked that “She is just a typical Gemini. Pay her no mind.” And I got sick a lot — missing most of the second half of my sixth-grade year.
I remember the first time that I noticed the trembling of my hands. I was in my twenties. The spoon in my hands continued to move like it was a stick and my bowl the drum. I watched until it finally stopped. I told no one. Years later, after my eldest sister had died from complications of multiple sclerosis, I knew I could no longer ignore it. For three years, I would spend every new year in the hospital undergoing video EEGs (electroencephalographs) as neurologists tried to determine what was going on with my brain. Two of the three neurologists said I had myoclonic epilepsy. And one, a movement disorder specialist, tied it to my wheat allergy. The one thing they all agreed about was the “abnormality” in my left temporal lobe. But even then I didn’t consider myself disabled. Back then I saw disability only in terms of what was visible to me. Not surprising to me now, given what I have learned about living in an ableist society.
In many ways, I have walked through life with a mask on. When I finally did acknowledge my disability, I was in my late thirties. I didn’t speak about it. I chose to write about it in an essay. It was my way of self-disclosing my disability. When my supervisor said, “You don’t look like anything is wrong with you,” I shut down again. With those words I went from confidence about self-disclosing my disability to hiding in the shadows again for almost 20 years. As I look back on this, I truly hope that employers are living up to the promise of creating inclusive environments where you can bring your whole self to work.
Fast forward to now. I am the program and communications director for the Disability & Philanthropy Forum. I never could have imagined two years ago how the Forum’s mission and my colleagues would impact my life professionally and personally. For the first time, I feel comfortable being me. And that allows me to focus on work that I truly believe in. One of the most fulfilling aspects of my role is helping to create learning opportunities that center the perspectives of disabled people while engaging philanthropy on a collective journey to understand disability inclusion as key to advancing social justice. Earlier this year, I worked on a mental health and disability webinar that featured three dynamic disability advocates. It was during this time that I decided to stop ignoring my mental health. I was the person who lied when the doctor gave me a “depression survey” to complete. I believe my fear came from my youth and hearing things said about folks like “You know her momma was crazy too!” Now I have a wonderful support team guiding and helping me to understand my conditions.
My disability journey has shaped how I see my identities — race, gender, and disability. I have chosen to refer to myself as a Black woman with a non-apparent disability. For me, words matter. I also understand there are those who choose to say invisible disability and I respect their choice. But as a Black woman I do not want to be invisible. For far too long, we have lived in the shadows.
- We Don’t Talk About Bruno” was written by Lin-Manuel Miranda for the movie Encanto.