Sonya Rio-Glick was born three months and 6 days untimely, alongside her twin, in the summertime of 1997. Each had well being issues. Sonya had cerebral palsy however wasn’t formally recognized till she was 2, after a bodily therapist approached her mother and father at a celebration. That’s when her household realized what had made Rio-Glick transfer in another way since infancy.
Cerebral palsy, which additionally impacts posture, is essentially the most prevalent motor incapacity in youngsters. However don’t name it a illness, says Rio-Glick, 26. “To say my physique is diseased is an imposition.”
Like many disabled folks, Rio-Glick has felt othered by friends, family members, and strangers. She has been imposed upon, and realized the best way to push again towards ableism — and parse out what’s price pushing again towards. She’s expressed lots of these classes by way of artwork: movie, dance, and theater.
Whereas attending an all-girls highschool in Albany, N.Y., Rio-Glick was woke up to the world of activism. After years of getting her incapacity erased and wishes ignored by classmates, she created a full-length incapacity documentary, “The Souls of Our Toes,” in 2015. She promoted the movie solo, burning copies, hand-illustrating DVD bins, and getting the film positioned in college libraries throughout the nation. She was 17 on the time.
From there, she determined to review theater and interned on the first totally disabled skilled theater firm within the nation, Phamaly (pronounced “household”) Theatre Firm in Denver. Within the unassuming amenities of Phamaly that summer time, Rio-Glick received her first actual style of disabled neighborhood — a hanging, significant change from the environments she’d grown up in. “I received to see what it seemed wish to stay a life with care,” she mentioned. It was in that neighborhood that she ordered her first wheelchair, on the encouragement of a roommate who had helped destigmatize the concept.
For her undergraduate thesis, Rio-Glick choreographed six dance items. Every mirrored an expertise she’d had as a disabled individual, just like the worry of not having the ability to exit her New York dorm constructing when a hearth alarm went off as a result of the college lacked sturdy evacuation protocols for bodily disabled college students. That mission led her to later turn into the chief director of a dance group, after which knowledgeable dancer with firms in Atlanta, Oakland, Calif., and different locations.
All of that artwork was Rio-Glick’s coaching floor. It grew to become a means for her to inform her personal story after enduring the locations the place she wasn’t seen in her totality. Now in search of a grasp’s in world growth follow on the Harvard Extension College, Rio-Glick can step away from the dance footwear, theater wings, and digicam. She’s centered on utilizing her advocacy and organizational abilities to work on systemic points that have an effect on disabled folks by way of an intersectional, world lens.
STAT spoke to Rio-Glick on a number of events about her upbringing, her work within the arts, and formative experiences as a younger disabled individual studying to advocate for herself. This transcript has been edited for size and readability.
What sort of theatrical work have been you doing at Phamaly?
I did a number of occasion planning, which on reflection I feel was good as a result of a lot of accessibility work is definitely occasion planning. My boss was a manufacturing supervisor, so I might additionally speak to him about the way you handle a manufacturing of 40 disabled folks, all of whom are completely different ages, all have completely different accessibility wants. One thing that I took away from working with the theater firm is that there must be a system. You’ll be able to’t simply say, nicely, we simply actually love one another, so it’ll work out ultimately.
Was that internship a significant entry level into the world of incapacity justice and incapacity neighborhood for you?
Really, my entry was after I was 14, proper earlier than I had a sequence of main orthopedic surgical procedures. I met the primary queer, disabled grownup that I’d ever met, who had cerebral palsy, however was in his 40s and already had a radicalized perspective. AndreAs Neumann-Mascis. He’s additionally a Ph.D. in psychology and really professionally completed, so he was capable of actually train me.
What was so hanging about assembly him?
That was the primary seed the place I used to be like, oh, issues are usually not what I’ve been instructed. AndreAs’ framing of incapacity was completely completely different. He was so unapologetic about it and really frank and simple and humorous. He was the primary individual to provide title to all of those experiences that I used to be having that I didn’t have language for.
I bear in mind AndreAs instructed me a narrative the place he fell in public and knew that extra paramount to his security than getting off the bottom was navigating the non-disabled folks’s emotions about him falling, in order that they wouldn’t name the police or contact him with out consent or do all these harmful issues. And I noticed, “Oh, I’ve additionally finished all these issues” — not essentially for these causes, however I’d additionally felt unsafe round non-disabled folks in a means I can’t describe however feels actual. I felt like I’m a nuisance to non-disabled folks as a result of they should cope with my distinction and that’s tough for them. AndreAs actually flipped that on its head and was like, “No, you’re put out by ableism on a regular basis and you’ve got a proper to be pissed about that.”
What was it like going to an all-girls faculty (and being one among only a few bodily disabled women to ever graduate from there)?
I actually thought for all the 4 years, I’m doing one thing improper or there’s one thing improper with me. And if I simply crack the code, I simply determine it out and do it in another way, then every part can be higher. It sounds excessive, however I feel I used to be actually dehumanized. I might converse and folks would act like no person mentioned something. No one would accomplice with me for group tasks. Additionally, nobody would speak about my incapacity. The truth that no person would speak about it made me really feel answerable for speaking all these items and ensuring that I wasn’t forgotten.
When did you are feeling the other, such as you really belonged?
I bear in mind as soon as I used to be going to this home celebration my freshman yr of school, which, truthfully, was courageous. And I used to be going with two associates and we needed to stroll from the practice a few occasions, and we have been strolling and I used to be so fatigued. I mentioned, “Oh, I must cease.” And my pal mentioned, “Do it’s worthwhile to sit?” And I mentioned, nicely, the place am I supposed to take a seat? I can’t sit on the bottom. I nonetheless can’t consider this: She received down on all fours and was like, “Sit on my again.” And we simply paused, and I actually sat on my pal. It was so informal. I rested, and we received up and we went to the celebration. And I felt protected to drink and protected to experiment with grownup actions as a result of I knew that I used to be with individuals who would maintain me protected.
Was there a second when it clicked for you that you just weren’t a nuisance, or damaged in a roundabout way? Or was it a gradual realization?
I truly began on this mission in highschool the place I noticed that I couldn’t go a day with out apologizing in some type. And so I made it my very own purpose to simply go in the future with out apologizing in any respect, for the entire day. And it took me 5 years. I actually needed to study: How do I shrink myself? And what’s the actual value of not doing that?
What sorts of issues have been you apologizing for?
It might be actually something. I used to be actually conditioned that taking on area was a fault. And so usually it needed to do with spatial relations, like if I bumped somebody or if somebody was watching me. If I used to be going slower than what different folks would, if I felt like I used to be holding any person else up, I might type of beat them to the punch — “Oh, sorry, I’ll be out of your means in a second.” When, like, no person cared if it took me an additional millisecond.
You’ve mentioned the phrase “illness” doesn’t really feel correct to explain your cerebral palsy. Why?
“Illness” implies a brief standing, proper? Both you might be healed of the illness otherwise you die from the illness. And cerebral palsy is neither of these issues. It’s a everlasting incapacity and it’s not deadly. Cerebral palsy can look a thousand alternative ways. I didn’t meet somebody who truly seemed like me or moved like me till I used to be 20 years previous.
The concept of illness additionally then calls upon medical intervention like, so what are we doing for the illness? And I don’t suppose I should be medicalized.
You talked about earlier that you just had orthopedic surgical procedures. Are you able to inform me about these?
I’m noticing as I recount all of this, there’s a theme of strangers approaching my mother and father in public and being like, “I can assist your daughter in a roundabout way.” They usually’re providing medical interventions. So it’s a must to image that, proper? Cute little white lady, smaller than she ought to be for her age, clearly disabled in a roundabout way and everybody and their mother feels moved to repair her — really, full strangers. There’s this component of randomness to the precipitation of my medical remedy. So after I was 13 or 14, we have been approached in a pumpkin patch by an older man who mentioned, “I’m a Shriner, and Shriners Hospitals can assist your youngster.” My mother and father seemed into it and so they took me to Shriners (the closest one was in Springfield, Mass.).
We did what’s known as the gait evaluation: They might see precisely what was improper with my gait, scientifically. They might analyze: “Right here’s the place a completely useful individual is and right here’s the place you might be. And we will see in your entire muscle tissue and your skeleton precisely what makes you stroll like that.” So then that will get handed off to a physician who comes up with a plan for you. I used to be formally a science mission. This physician mentioned, “There are six operations that we will carry out, but it surely’s all or nothing.” Mainly, we will utterly restructure her legs, however you possibly can’t simply select a pair — all of them work collectively.
What was it like making the choice to go forward with the procedures?
Legally, my mother and father needed to be those to say sure, however my mother and father mentioned, we’re leaving this to you as a result of it’s your physique and we would like you to be snug. It didn’t actually really feel like there was room to say no. On reflection, it felt like a choice made out of worry.
How did artwork issue into all of this as you have been getting older and coming into your personal?
Artwork is the place I needed to discover my neighborhood and inform my very own story. Whereas concurrently, in each different area I used to be in, I actually didn’t have that very same company. And now I don’t want it as a mode of expression to train my very own company. Prefer it was, “If I’m going to get heard, I’ve to make a documentary or I’ve to do that large, spectacular mission.” And now I feel that I’m round folks and I additionally consider in my very own voice sufficient that I can simply say my piece and belief that somebody goes to listen to it.
This story was produced as a part of NeuWrite Atlanta’s course, “Voices in Motion: Incapacity Justice in Science Writing.”
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