A disabled artist’s journey from ‘Oh, sorry’ to social justice activism

Sonya Rio-Glick was born three months and six days premature, alongside her twin, in the summer of 1997. Both had health complications. Sonya had cerebral palsy but wasn’t formally diagnosed until she was 2, after a physical therapist approached her parents at a party. That’s when her family learned what had made Rio-Glick move differently since infancy. 

Cerebral palsy, which also affects posture, is the most prevalent motor disability in kids. But don’t call it a disease, says Rio-Glick, 26. “To say my body is diseased is an imposition.” 

Like many disabled people, Rio-Glick has felt othered by peers, relatives, and strangers. She has been imposed upon, and learned how to push back against ableism — and parse out what is worth pushing back against. She’s expressed many of those lessons through art: film, dance, and theater.

While attending an all-girls high school in Albany, N.Y., Rio-Glick was awakened to the world of activism. After years of having her disability erased and needs ignored by classmates, she created a full-length disability documentary, “The Souls of Our Feet,” in 2015. She promoted the film solo, burning copies, hand-illustrating DVD boxes, and getting the movie placed in university libraries across the country. She was 17 at the time. 

From there, she decided to study theater and interned at the first fully disabled professional theater company in the nation, Phamaly (pronounced “family”) Theatre Company in Denver. In the unassuming facilities of Phamaly that summer, Rio-Glick got her first real taste of disabled community — a striking, meaningful change from the environments she’d grown up in. “I got to see what it looked like to live a life with care,” she said. It was in that community that she ordered her first wheelchair, at the encouragement of a roommate who had helped destigmatize the idea.

For her undergraduate thesis, Rio-Glick choreographed six dance pieces. Each reflected an experience she’d had as a disabled person, like the fear of not being able to exit her New York dorm building when a fire alarm went off because the school lacked robust evacuation protocols for physically disabled students. That project led her to later become the executive director of a dance organization, and then a professional dancer with companies in Atlanta, Oakland, Calif., and other places.

All of that art was Rio-Glick’s training ground. It became a way for her to tell her own story after enduring the places where she wasn’t seen in her totality. Now seeking a master’s in global development practice at the Harvard Extension School, Rio-Glick can step away from the dance shoes, theater wings, and camera. She’s focused on using her advocacy and organizational skills to work on systemic issues that affect disabled people through an intersectional, global lens.

STAT spoke to Rio-Glick on several occasions about her upbringing, her work in the arts, and formative experiences as a young disabled person learning to advocate for herself. This transcript has been edited for length and clarity.

What kind of theatrical work were you doing at Phamaly? 

I did a lot of event planning, which in retrospect I think was good because so much of accessibility work is actually event planning. My boss was a production manager, so I would also talk to him about how you manage a production of 40 disabled people, all of whom are different ages, all have different accessibility needs. Something that I took away from working with the theater company is that there has to be a system. You can’t just say, well, we just really love each other, so it’ll work out in the end.

Was that internship a major entry point into the world of disability justice and disability community for you?

Actually, my entry was when I was 14, right before I had a series of major orthopedic surgeries. I met the first queer, disabled adult that I’d ever met, who had cerebral palsy, but was in his 40s and already had a radicalized point of view. AndreAs Neumann-Mascis. He’s also a Ph.D. in psychology and very professionally accomplished, so he was able to really teach me. 

What was so striking about meeting him? 

That was the first seed where I was like, oh, things are not what I’ve been told. AndreAs’ framing of disability was totally different. He was so unapologetic about it and very frank and straightforward and funny. He was the first person to give name to all of these experiences that I was having that I didn’t have language for. 

I remember AndreAs told me a story where he fell in public and knew that more paramount to his safety than getting off the ground was navigating the non-disabled people’s feelings about him falling, so that they wouldn’t call the police or touch him without consent or do all these dangerous things. And I realized, “Oh, I’ve also done all those things” — not necessarily for those reasons, but I’d also felt unsafe around non-disabled people in a way I can’t describe but feels real. I felt like I am a nuisance to non-disabled people because they have to deal with my difference and that’s difficult for them. AndreAs really flipped that on its head and was like, “No, you’re put out by ableism all the time and you have a right to be pissed about that.”

What was it like going to an all-girls school (and being one of very few physically disabled girls to ever graduate from there)?

I really thought for the entire four years, I’m doing something wrong or there’s something wrong with me. And if I just crack the code, I just figure it out and do it differently, then everything will be better. It sounds extreme, but I think I was really dehumanized. I would speak and people would act like nobody said anything. Nobody would partner with me for group projects. Also, no one would talk about my disability. The fact that nobody would talk about it made me feel responsible for communicating all this stuff and making sure that I wasn’t forgotten. 

When did you feel the opposite, like you truly belonged?

I remember once I was going to this house party my freshman year of college, which, honestly, was brave. And I was going with two friends and we had to walk from the train a couple of times, and we were walking and I was so fatigued. I said, “Oh, I need to stop.” And my friend said, “Do you need to sit?” And I said, well, where am I supposed to sit? I can’t sit on the ground. I still can’t believe this: She got down on all fours and was like, “Sit on my back.” And we just paused, and I literally sat on my friend. It was so casual. I rested, and we got up and we went to the party. And I felt safe to drink and safe to experiment with adult activities because I knew that I was with people who would keep me safe.

Was there a moment when it clicked for you that you weren’t a nuisance, or broken in some way? Or was it a gradual realization?

I actually started on this project in high school where I realized that I couldn’t go a day without apologizing in some form. And so I made it my own goal to just go one day without apologizing at all, for the whole day. And it took me five years. I really had to examine: How do I shrink myself? And what is the real cost of not doing that? 

What kinds of things were you apologizing for?

It could be literally anything. I was really conditioned that taking up space was a fault. And so often it had to do with spatial relations, like if I bumped someone or if someone was staring at me. If I was going slower than what other people would, if I felt like I was holding somebody else up, I would sort of beat them to the punch — “Oh, sorry, I’ll be out of your way in a second.” When, like, nobody cared if it took me an extra millisecond.

You’ve said the word “disease” doesn’t feel accurate to describe your cerebral palsy. Why?

“Disease” implies a temporary status, right? Either you are healed of the disease or you die from the disease. And cerebral palsy is neither of those things. It’s a permanent disability and it’s not fatal. Cerebral palsy can look a thousand different ways. I didn’t meet someone who actually looked like me or moved like me until I was 20 years old.

The idea of disease also then calls upon medical intervention like, so what are we doing for the disease? And I don’t think I need to be medicalized. 

You mentioned earlier that you had orthopedic surgeries. Can you tell me about those? 

I’m noticing as I recount all of this, there’s a theme of strangers approaching my parents in public and being like, “I can help your daughter in some way.” And they’re offering medical interventions. So you have to picture that, right? Cute little white girl, smaller than she should be for her age, clearly disabled in some way and everyone and their mom feels moved to fix her — truly, complete strangers. There’s this element of randomness to the precipitation of my medical treatment. So when I was 13 or 14, we were approached in a pumpkin patch by an older man who said, “I’m a Shriner, and Shriners Hospitals can help your child.” My parents looked into it and they took me to Shriners (the closest one was in Springfield, Mass.). 

We did what’s called the gait analysis: They could see exactly what was wrong with my gait, scientifically. They could analyze: “Here’s where a fully functional person is and here’s where you are. And we can see in all of your muscles and your skeleton exactly what makes you walk like that.” So then that gets passed off to a doctor who comes up with a plan for you. I was officially a science project. This doctor said, “There are six operations that we can perform, but it’s all or nothing.” Basically, we can completely restructure her legs, but you can’t just choose a couple — they all work together.

What was it like making the decision to go ahead with the procedures?

Legally, my parents had to be the ones to say yes, but my parents said, we’re leaving this to you because it’s your body and we want you to be comfortable. It didn’t really feel like there was room to say no. In retrospect, it felt like a decision made out of fear. 

How did art factor into all of this as you were getting older and coming into your own?

Art is where I had to find my community and tell my own story. Whereas simultaneously, in every other space I was in, I really didn’t have that same agency. And now I don’t need it as a mode of expression to exercise my own agency. Like it used to be, “If I’m going to get heard, I have to make a documentary or I have to do this big, impressive project.” And now I think that I’m around people and I also believe in my own voice enough that I can just say my piece and trust that someone is going to hear it. 

This story was produced as part of NeuWrite Atlanta’s course, “Voices in Action: Disability Justice in Science Writing.” 

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