how do you come out as disabled?
I asked an AI to interview me because no one ever asked. Hey, I'm Evie. I'm an actor.
EVIE:
Can you write 10 interview questions for an actor with a disability?
AI:
Sure. Here are 10 interview questions for an actor with a disability. These questions are designed to get to know the actor better and to understand how their disability has impacted their life and career. They also allow the actor to share their strengths, goals, and advice for other actors with disabilities.
EVIE:
Sounds good.
AI:
Tell me about your disability and how it has shaped your life.
EVIE:
I have whatever the medical term is for “chronic squishy spine”, also known as “degenerative disc disease” which is medical for “this body part is not one of God’s better creations, and yours just so happen to suck extra.”
My discs, the bouncy bits in between my spine bones, are prone to slippage. It happened to me at 17 for the first time really intensely and caused something called Cauda Equina Syndrome. (Google it! It still grosses me out to explain.) In 2018 I was moments away from being paralyzed from the waist down and needed emergency spinal fusion surgery. My surgeon at that time said I had the spine of an 80 year old, so I guess that means I’m super mature for my age.
About 5 months ago I sustained an injury that I’ll go into more detail about in a bit, which led to my needing another corrective surgery. This will be performed on me August 2nd, 2023 at Jackson Memorial Hospital in Miami.
(Finally—someone performing on me instead of my performing for them.)
If you do end up Googling conditions like mine, which you should, because it can happen to anyone, you’ll find that the #1 most pervasive symptom is loss of quality of life. I find that, since I was diagnosed so young, I have very little reference as to what life was like before. I do remember I put 100% of whatever energy I had into what I really wanted to do, regardless of what was in my way. It was very much giving Rachel Berry. I originally treated this disability as just another obstacle between me and Broadway, essentially, like breaking a bone or having a gay boyfriend. All things considered—I don’t want to say that my pain hasn’t hindered me, because it absolutely has and I’m about to tell you how: but I have to admit, it would be hard to tell just looking at me.
As a result of various levels of injury, my ability has fluctuated wildly in the past 10 years. I hurt myself at a callback about 5 months ago which put me in a place where I can only stand, sit, or lay down for 40ish minutes without being in pain. As a result I wake up every morning around a 7 on the pain scale. When I sneeze I often pee myself (only a little!) I can’t bear more than 10 lbs of weight, and generally my nervous system is a little wacky. My extremities fall asleep easily because my nerves get pinched. I had my fusion at L4/L5 so I lost a few levels of movement in my lower back. It’s very much giving that fish from the SpongeBob chocolate bar episode.
I want to make it very clear that every medical professional I’ve worked with has cleared me to return to an acting career after this surgery. Every doctor has told me this disability is not going to prevent me from auditioning, rehearsing, and performing, as long as I take care of myself–and frankly, I’m not as worried about those aspects of my career. I’m more worried about everyone else. I’m more worried about how theatre makers are socialized from childhood.
I used to think of my disability like it was a broken bone. When I was 17 I thought, I’ll just get this major life changing surgery and go right back to my life. I had no plans to slow down, I thought I would have lost my steam. Went to college that year. I thought, nothing else will ever happen to me, and nothing is more important than being that much closer to the dream. It’s no big deal. I cannot fall behind or people will forget about me.
Turns out, it actually is a really really big deal, and it ostensibly will keep happening for the rest of my life. If you told me that then I would have fought you, I would have had a tantrum and I wouldn’t have been able to handle it–but it’s been a few years, and I’m learning to live with it.
If I start my day in pain and it controls me, I have to consider what must be done to turn that energy around. It’s alchemy—not an easy balance to maintain. Sometimes I’m not great at it. If you’ve ever heard of spoon theory, it’s the idea that a disabled person starts every day with a different number of spoons. Spoons are measurements of energy. I may use a few to get coffee with a friend, a few to get to work, a few to get back. By the end of the day I might be out or I might be in the red. Today I might have half as much as I will six months from now, and it may fluctuate at any pace throughout my life–or throughout the week.
At the moment I’m feeling badly enough to need more corrective surgery. I’m going to describe to you, dear reader, what I think is going to happen in the operating room.
(cw: surgery details, viscera, skip this next paragraph!)
My surgeon Dr. Urakov, a man I have only met once over Zoom, will slice me open at my hip and stick a teeny tiny robot arm in me reaching allllll the way back to my spine. (“the muscles part like a curtain, it’s actually quite beautiful”) That robot arm has a little robot hand that will slice off the part of my disc that’s bothering me and then sew me back up.
I’m not a doctor. I trust Dr. Urakov because the way he described the surgery to me was so romantic, and he was like, smiling to himself not making eye contact with me. I thought that was really endearing. I could feel that he really cares about his job, like he sees performing surgery as an art, like my mother does.
My mother is a gynecological surgeon and she is taking over this entire process for better or worse. The only reason I can take the time to sit here and write this is because she’s taking care of all the paperwork and phone calls and scheduling. Honestly, I couldn’t do it alone. I don’t know what I would do.
The last thing I’d be thinking about is being an actor.
I just wouldn’t have the energy.
When I tell people this they’re usually like, “but you do so much!” and my answer to that is: “what if I didn’t?” Sometimes I feel like if I wasn’t grinding so hard I’d disappear. This is a common inherited attitude of both actors and girl children from Chinese American families–but it applies triple for me these days. I think I have to be extra loud to stay heard. That’s why I’m so fucking annoying.
AI:
How has your disability impacted your acting career?
EVIE:
As someone who can, as a branding choice, claim multiple marginalizations—I can confidently say that having a vague invisible illness is the least profitable of them all.
(This is a joke. Kind of!)
Picture this: me, an anxious, closeted 18 year old starting my freshman year at Boston Conservatory’s musical theatre program in a full torso brace. Because of course, I couldn’t take a gap year after spine surgery or else I would have “lost my steam”. So maybe a better question would be, how has your art affected your disability? The answer to that is, dramatically. Buh dum tsss.
College was a WILD time. I was on So. Many Drugs during Broadway school. I mean, drugs that were literally prescribed to me, but drugs no less. My friends would go to parties on weekends and I’d be like, “no thanks, I can’t drink on Oxies.” Very Florida-Core. I can’t believe no one tried to stop me. I would fall asleep in class. Famously, because I snore too. It was a running gag. Big dramatic silence into big snore from back brace girl. That’s when it was most visible. So much of the work we did in college came from and involved spinal undulation and it made me cringe every time.
First semester we were doing Grotowski’s Cat in movement class and our professor was like, weirdly militant about how we were supposed to “whip” our spines. I was lying on a yoga mat, again, in a whole torso brace, being called out by name for not whipping my spine correctly and thinking “God, is this all there is??” as it turns out, it’s a perfect metaphor for today.
I lost the back brace a few months in. I was technically recovered from surgery and cleared to go back to school, but not to dance. I was the only non-dancer in my program so I filled my schedule with classes from the Devised Theatre program. Playwriting, queer history, circus class. I was on aerial silks and trapeze while my friends were at ballet. I met some of my favorite people there. That stuff fed me. Honestly, I hated dance class anyway, and having my hands in the sandbox, practicing a theatre modality that was not about beauty, or slaying, made me a) happy, and b) braver. I went to a PWI and I was quite loud there. I once made the mistake of bringing an ethical issue up with my dean once and he looked me dead in the eyes and said, “I don’t get it, Evie. Aren’t you grateful to be here?” That’s a classic theatre socialization trap. It kills me! Yes–I am grateful for any work I’ve been able to do, I’m grateful when my hard work pays off, and yes, when someone chooses me, but at the end of the day I’m more grateful to be alive. I’m more grateful to still be doing this at all, for the support system I have to be able to audition and perform and do all kinds of weird stuff on the side. A job is just icing–and I think other actors can sense that about me and it scares and intrigues them. It’s like, I walk around like every day is my last and I’m raw as hell feeling all of this pain, and I’m still discovering stuff. I’m singing and crying onstage and doing the most for this objectively frivolous American art form (in the case of musical theatre) and it is like… the Stanislavsky purists’ dream. “Everything is so close to the surface”. It’s all bullshit but I would be lying if I said I’ve never used my medical trauma for emotional recall.
Before I found out about my disability, when I was doing intensive educational theatre, I would have killed to have this quality. I was a child with no life experience and I walked through life with this attitude of “please like me, please like me,” and that’s kind of an unavoidable trap of acting training. It’s hard to escape and it tends to follow people throughout their lives. It took look life changing medical news for me to say fuck it, we ball. We can work together and we can talk to each other and yes, we can care about each other. You don’t have to like me, and you don’t have to understand me to see the value in my art.
AI:
What are some of the challenges you have faced as an actor with a disability?
EVIE:
My ability varies and is entirely inside me, to be communicated by me and only me. It is only safe for me to pursue a physically active lifestyle at all if I know EXACTLY how to communicate my needs.
As someone who was raised by immigrants from Soviet Russia and Communist China respectively, who speak their native languages fluently but only taught me English—you can imagine that easy communication is not something that comes naturally to me. I am still learning this skill and I fail often.
I haven’t been as open about my disability in the past, but I’ve had to recently to keep myself safe. In the NY theatre world at large—when I do talk about it, it’s never not weird. The industry loves to put certain visible disabled actors on a pedestal to feed their ego but will turn around and be weird as hell to disabled culture workers IRL when they talk about their experiences. Because there’s no rulebook for empathy, especially professionally, and ESPECIALLY in the theatre industry, hearing about pain makes people uncomfortable. Nobody wants to hold that. Some are better than others but nobody wants to hold physical pain. They’re more open to other kinds of pain, I think, anything they can translate into a hero’s journey. That’s very human, to work towards a linear plot with a satisfying ending. That is not what life looks like for people with disabilities, visible or otherwise. It’s the same reason there are virtually no plays and musicals about living with disability, even though it has been one of the richest experiences of my life and I’m sure of the same for others. The plots of our lives don’t make narrative sense, so there generally isn’t much interest in them.
When we are seen, people tokenize and fear us. They love the press of hiring an actor with a disability and simultaneously, they fear the kind of trouble they can get in if anything bad happens to us under their watch. I think that’s true of a lot of marginalizations (some of which I occupy concurrently) and I think some of that discomfort could be alleviated if there were more mediator roles in the industry. It’s easy to say “just talk to us” but I’ve been in those rooms and they are pressurized, to say the least. Of course, the budget cuts, etc etc. It just has never been a real priority to them, and I get that, because at the end of the day, musical theatre is about escapism.
All this considered–I have been divinely lucky to work in some incredibly accessible, inclusive, communicative rooms. A majority of the folks I’ve worked with have been kinder and more accommodating than I ever expected, and it’s from those jobs I learned that pursuing the work I want to pursue is more valuable to me than ducking out of fear. I have had to learn to trust my gut.
I follow that impulse and it leads me places, and sometimes it does me dirty. I popped my last disc at a movement callback–I admittedly overdid it, and, in my ~professional opinion~, it was one of those less than safe rooms. (Non-dancers all coming out with bruises, you’ve seen the type) So I hesitate to assign blame, it was just a perfect storm. Actors get hurt all the time. Adrenaline frequently gets the better of us, and like most 20-somethings I am still learning how to speak to my own body and protect it.
AI:
How have you overcome these challenges?
EVIE:
All kinds of therapy. I have worked consistently to be able to voice my needs and redirect people because if I can’t communicate my needs, they might as well go unmet. I have made the mistake of feeling bitter about jobs where my needs weren’t met, when the truth is, I probably did not communicate them effectively. As I mentioned before, my socialization was “abnormal” to begin with. Not a lot of people know this about me but they thought I had problems as a kid, if you know what I mean, because I just didn’t act like the other kids. I had no idea. I just stuck to what I was good at and what brought me joy because that’s what my parents taught me.
I say this all because I’m overcoming these challenges the same way I avoided being bullied in elementary school. I’m kind of a chameleon. I’ve had no choice but to learn how to curate an extremely clear sense of self, and strong boundaries, but an uncanny ability to step into all kinds of circles because I never truly integrate into any of them. I’ve learned that if I know exactly who I am and what I need, no one can tell me anything. I can focus on cultivating, which is great because apparently authenticity is super in right now.
As far as day to day navigation goes, there’s a whole nother level of awareness I maintain while I’m flaring up and performing. To take Parable as an example, about half of my set blocking for that show was incredibly active and core heavy, quick level shifting, running all around the stage, getting fake shot (twice), and this was a few weeks ago, while I was very much in need of surgery. It seemed to all my friends and family watching that I was killing myself up there. I was doing things that seemed impossible to those who know me in life. Behind the scenes, I was in conversation with my SM, company manager, and director about backstage care and modifications. At no point were there gripes, arguments, or frustration between us, and that is how I know it’s possible.
Also, pretty privilege goes a significantly longer way when you have a disability. I can currently occupy a Little Women style ‘withering away in my bed with my small dog and my knitting, please take me to the seaside to recover’ aesthetic and that is absolutely by design. I’m in weak girl mode right now because I’m getting surgery in Florida and I need to be as safe as possible.
Essentially my #1 priority is safety and I’ve had to learn how to adjust myself as needed.
AI:
What are your strengths as an actor?
EVIE:
The last director who worked with me said I’m like a tuning fork–and I was like, “what an oddly specific compliment?”, but the more I thought about it the more it made sense to me. I’m very affected by stimulus–literally, my nervous system is firing on a wavelength that is medically different. Maybe this is a reach but I think that’s a part of why I’m particularly suited to theatre. The same stimulus gets broadcast through my whole body and makes a big noise.
It looks weird up close. I look kind of weird up close.
I also think that is a strength because it keeps cool shallow normies away from me.
On that–I think a strength of mine is that I attract generous, kindhearted people. Absolutely in my work, but also in my personal life. When you have a disability, keeping lots of friends is difficult because you can’t always show up the way you want to. My circle is small but mighty. I watch my friends, and I understand goodness, and care, and love, and that makes me a better person. I learn to recognize it in others, which in turn makes me a better artist.
Also, I read, I get really into making things, I dive down strange rabbit holes in my spare time. Since acting has been my most of my work lately, I’ve been very deliberate about doing anything and everything else. I know for myself, I have the most access to the tools I need to act when I’m living a holistic life. I love the art for what it is and I do all of this sometimes listening to broadway cast recordings because at the heart of it all I’m a shameless musical theatre fanatic–and I think that pure earnestness is what has driven me. At the end of the day I’ve been LAUGHABLY lucky to be able to pursue this career. I’m really just chuffed to be here. I am, at this very moment, listening to the Mean Girls soundtrack top to bottom for pleasure. That should tell you something.
AI:
What are your goals for your acting career?
EVIE:
I bet you thought I wasn’t going to say Broadway.
It’s Broadway. I can’t even lie. It has always been my dream, I say with the most corny affect. Let’s be real: an 8 show week? I’d need a cute little princess track, at most, to perform a job like that to the best of my ability and to stay well, but this is done to accommodate older actors all the time. I don’t see why that same logic couldn’t apply to a young disabled actor.
I think there is this idea that as a young actor you have to “pay your dues” by “pounding the pavement” and I think that is ableist as fuck. (The first time I’ve used that word here, thank you very much) I think that idea comes from people who’ve suffered for too long projecting their pain on green actors because they’re inexperienced. My question for them is, who are you to define experience?
The truth is, my time in this career is probably limited. There will likely come a time where continuing to pursue it will not be sustainable for me.
This is why I have a fire under my ass.
I have a lot to say and a lot of people to sing for, and I’m not done quite yet.
AI:
What are your thoughts on the representation of people with disabilities in the media?
EVIE:
There isn’t enough. I can count examples on one hand and you’d probably turn up the same ones. I guarantee there are a lot more actors and public figures who are disabled than we think. Like I said, it’s not currently profitable.
AI:
What advice would you give to other actors with disabilities?
EVIE:
I can’t speak for all disabilities, but here are some words for someone with a body like mine:
You are not a monolith. You will be treated like one, so it is extra important that you know how to effectively communicate your specific needs. If you don’t, they won’t know, and they will assume. You do not want them to assume because you’re gonna start feeling weird and things will become weird. Guaranteed.
Always keep your SM or related actor-conduit in your contacts, and ALWAYS be nice to them. There will probably come a day you will owe them one.
It actually is really cool to take care of your pains, and doing so will inspire others. Do what you need to do at work and watch a massage train form. Magic.
Please, please, please do not hold yourself to all the same standards as able bodied actors. It’s ok to hold yourself to some, it’s ok to strive for excellence. You can be on fire, but you are probably more akin to a candle than a steady flame. You must treat your light kindly or it will burn out.
Lastly, if your light burns out, you can always light it again.
You are likely unprecedented. When you encounter what you perceive to be a career failure, remember this. You are unprecedented. Take a bath. Touch grass if you can.
AI:
What are you most excited about for your future in acting?
EVIE:
I have a friend who was told by a former employer that their disabilities were not congruent with the needs of having an acting career. Not that specific job—they told my friend they were too disabled to act. (They are not. I’ve seen them do it beautifully, and they never asked for more than the bare minimum, respectful accessibility.)
Every time I speak to another disabled actor I hear horror stories. To be clear, my perspective is incomparable to that of a visibly disabled actor, but I can imagine we have a lot of the same fear and hope.
I can imagine people feeling similarly about us—there is this pervasive idea that “all the kids are disabled and nonbinary now” and that we’re all special snowflakes thirsty for attention and clout, so we crawl out of our little hometowns, move to NYC or LA, and aim to become viral semipublic figures, or lolcows on the internet, depending on your perspective.
I gotta say, as I’ve watched my marginalized entertainment friends become recognizable mini celebs, I have had less and less insatiable drive to do the same.
It looks every bit as fun glam and sexy as I imagined—but they aren’t being paid enough, especially for the death threats they're getting for being openly queer on non eq Broadway tours. Nevermind having a disability–dealing with that emotionally and spiritually is not worth it to me.
If it happens to me, after I get this surgery and the perfect role comes up, or something happens for one of the workshops I’ve been in, I will absolutely pursue it because it is my childhood dream and, like I said, it looks super fucking fun glam and sexy. I started doing this because I used to write Cats fanfiction. This has always been exactly what I wanted to do. However, if Broadway calls, I just might get a flip phone after opening night.
AI:
Do you have any questions for me?
EVIE:
Yeah, how’d you get so smart?
Evie Schuckman (they/them) is an actor, musician, and visual storyteller based out of Brooklyn, NY and Palm Beach, FL. They have appeared as an actor in national tours, regional theatre, commercials and film, and most recently they played Emery and Mrs. Hsu in Octavia E Butler’s Parable of the Sower (Tour, Lincoln Center). They are a resident company member at theatre incubator Mercury Store in Gowanus, Brooklyn, and they hold a BFA in Musical Theatre from Boston Conservatory at Berklee.
all photos by Jam at Human Flower Productions, who collaborated with me on the direction of this shoot and captured it on gorgeous 35mm.