Why actors with SMA deserve greater media representation, part 2

Last in a series. Read part one.

“How are you feeling today, Sherry?” my director asked. We were about to rehearse for a play we’re working on. I’m still new to performing, and SMA makes me prone to fatigue, so before we start, she always checks on how I’m doing. My response helps her determine how much she can push me.

“Physically? I’m at six battery bars out of 10,” I said. “Emotionally? I need to focus on problems that aren’t my own right now.”

That’s one of my favorite things about acting: You get to leave your personal problems at the door.

All that matters once you’re in your workspace is the script, your scene partners, and your director’s remarks. You must stay present and — at the risk of sounding pretentious — create, inhabit, take action, and react to your surroundings with the soul of your role.

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It’s an especially good tool for someone like me with SMA and attention-deficit/hyperactivity disorder. Because of my mobility limitations, it’s easy for my brain to detach itself from where my body is. The trouble with drifting into daydreams and spirals, however, is that you’ll fail to develop a vocabulary for what your body senses and how that information affects the brain itself.

For me, this makes it impossible to see myself as anything but a singular instrument when I’m performing. Even my wheelchair transforms from a mobility aid into an extension of myself, because it’s how I move and connect to the ground; a sharp turn influences my tone differently than a slow one.

But this means it’s my responsibility to ensure not only that I can perform, but that I can be pushed. I’ve learned to compartmentalize. If it takes five turns to find the right tone in a scene? Ten? Fifteen? Yeah, my director and I will do it. Over and over and over, along with every other scene, for three hours a day, one or two days every week, until we’re satisfied with the results or I’ve hit my limit.

Roll call

If you think training and rehearsal stops the moment I’m home, though, you’re wrong.

In hindsight, the stories of action stars eating steamed chicken and working out for months should’ve warned me I needed to up my stamina. Part of preparing for a role includes adapting your body to withstand it. The character I’m playing onstage may not be saving the world in tights, but she is demanding her sister to be present. My voice must project out to the audience while carrying deep emotion for a longer time than I’m used to.

So, in addition to analyzing and rehearsing my script at home, I’m doing breathing exercises and jaw stretches for 40 minutes to an hour every day. I eat more carbs for extra energy, particularly on rehearsal days.

Acting, if you couldn’t tell by now, is both the most helpful and most intensive thing I’ve ever done.

The final bow(?)

If you’re reading this and feeling concerned for my well-being, given my disability and day job — good. What I’m doing is a fraction of what nondisabled performers often go through. I have a mentor who’s currently rehearsing another play for eight hours a day, six days a week. A director recently asked me if someone with SMA could handle a 12-hour day and several night shoots in a row for a short film. In my opinion, this speaks to how inaccessible and unsustainable show business is for many.

But it also speaks to the dedication and commitment of every performer, especially if they’re disabled and they, like me, signed on to a project untrained. The ableist nature of show business made it too opaque to me. I didn’t have other actors with SMA to look to for guidance. I’m lucky I adore acting and have gained discipline and confidence from it, and would gladly become a full-time professional if I could.

Yet I also feel I’ll have to work twice as hard to be seen as worthy of opportunities as a nondisabled performer. I’m often asking myself if I’m lagging behind and how far I have to go to catch up in skill. Because while the play I’m in is produced by a disability nonprofit, ART:DIS, future acting jobs that I’ll want won’t be.

I worry that casting directors will only see the SMA, rather than the performer who has it. I’m trying my best to remember that I’d once convinced myself I’d never fulfill my dream of being an actress. I believed ableism and SMA robbed me of the opportunity completely. So maybe things will change, and we’ll see SMA patients in major productions on the screen and stage one day. Life, like the show, must go on.

Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.