When I was five, my heaven was a tiny dusty theater at Upsala College in East Orange, New Jersey. My father taught music history there. But the best part about his job for me, and probably for him, was music-directing for the theater, Workshop 90.
To even call Workshop 90 a theater was bold. The building started its life as a humble carriage house, which was eventually rebuilt into a theatrical space. The little building held a few seats (120?) covered in faded blue velvet. The stage was small, making any choreography a laughable challenge. The pit band area was a postage stamp, somehow accommodating an upright piano, at which my father masterfully directed his band, consisting of him, a bassist, and a drummer. There was a larger backstage area, with a makeup room, full of rectangular mirrors lined with plain light bulbs, a costume room, a prop room, and a back area, piled high with wood for set construction.
I didn’t care about the construction, or the costumes. I was pulled, like a moth to a flame, to the seats in front of the stage. I sat there in the dark, watching rehearsal after rehearsal, transfixed. I came to every rehearsal my dad would allow. I knew everyone’s lines, songs, and blocking.
To set the stage further, as it were, I was five. It was less than a year since the fire which had obliterated two-thirds of my body. At this point, my scars had not yet faded, and were bright red. I did not yet have a bottom lip, so I used my tongue to fill in, helping me speak. I was a hideous child.
But I was not hideous in this theater. Life was painless for me in this theater. Here, I was the baby daughter of the fearsomely talented music director. Even though I was five, my adoration of the theater established me as someone the students took seriously. Over the years, I was given jobs. I ushered people to their seats. I helped organize tickets sales. I worked props. I played flute in Dad’s pit band. But my greatest joy was when I got to act.
My only part in a Workshop 90 production was “The Balloon Girl” in the musical, Gypsy. This ill-fated character appears briefly in a vaudeville act, and has no lines. Her claim to fame is that she has air-filled balloons tied all over her dress, but is chased away by Mama Rose in a pique, holding a sharp pin. My dress was a satiny light blue, cinched at the waist, with a white puffed sleeve top underneath. The costume lady (who in retrospect was probably 21), carefully pinned balloons all over my blue gown. I walked on stage, Act 1, Scene 1, and stood in the background. At some point, Mama Rose turned on me, pulled out her hat pin and chased me off stage. That was my acting debut.
There were no more roles for me at Workshop 90. I did land the role of the Wicked Witch in my school's 3rd grade production of Hansel and Gretel. I had one furious solo song, during which I galloped around the stage on a broom, singing and pretending to fly. I wore a fetching black gown with jagged taters at the hem and sleeves, and a pointy black hat. And I really could sing.
At the end of my triumphant Witch song, I stood for my applause, waiting to bow. Instead, the audience booed. I was so confused. I made an intensely committed witch. Why would they boo?
“It’s because you play the Witch. They were booing your character, not you.” Mrs. Bauman, my teacher, kindly whispered in my ear while we huddled in the wings.
To this day, I don’t know why they booed me. Was it because I played the Witch? Or was it because I looked like a witch?
Other roles came, here and there. I joined the high school drama club, a blessed collection of kids who were traumatized, gay, or both. I fit in there, and no one booed me, not even when I played Lizzy Borden, or that mean nun in the Sound of Music who campaigns to kick Maria out of the convent.
I went to college as a drama major, immediately enrolling in”Intro to Acting.” Scene reading after scene reading, I saw my star rising in the professor’s eyes. By the semester's end, he cast me in a scene from Chekhov’s The Seagull with the best male actor in the class. We performed the scene, just to the class, but we were a triumph. After that, satisfied with my success and lack of booing, I put acting aside, and majored in psychology.
I was too insecure to put my talent to the test. I also mysteriously never got the roles I envisioned. I thought I was the plucky alto belter, like Nelly Forbush or Ado Annie. Instead, I got the Witch or Mean Nun. My pride wouldn’t let me be conscious of the truth, but I did know it somewhere inside myself: there was no path forward for an actress scarred on two thirds of her body.
Until there was.
Recently, an agency called Zebedee Talent put out an open call for models/actors with visible difference. I heard about the opening through a friend and immediately imagined applying. Then I thought, “no one wants a model in her 60s”, and put the idea aside. Still, the possibility kept reappearing in my head, like an internal argument.
“I could apply.”
“That’s ridiculous.”
“But I could. They didn’t say only young models.”
“You have never modeled a day in your life.”
“But they need actresses too. I can act.”
“Sure, and there are so many opportunities for late middle-aged, profoundly burned actresses.”
Back and forth my thoughts churned until one morning, I declared “Enough!” and applied. My long-suffering husband Doug, (who really always has better things to do), snapped several photos of me against a neutral backdrop. I recorded a quick video. I measured my inseam (fine) and my hips (oh dear), completed the forms, and hit “send.”
Two months later, I received an email from Zebedee entitled, “Invitation to Join.” I was stunned. To onboard, I would need full fashion shots, and a recorded monologue. February became frenzied. One profoundly raining morning, I drove to a fashion photographer’s studio, four outfits in tow. I felt a little silly, posing, changing clothes, but she told me I was a natural.
My photos proudly displayed on the Zebedee USA website, I wondered if I would get any parts. Again, what call is there for a late middle-aged burned model/actress? Then, one morning, I got my first audition. “You have a request to self-tape!” Wow! I scrolled down to learn more about the part. The character’s name was “Louisa.” Great, I thought, Louisa, just like the blonde daughter in the Sound of Music. I always liked that name. And so much better than that mean nun!
I scrolled further. The producing studio was a well-known medical company. Hmm, I thought. Well, this definitely isn’t CBS, or a TV show, or a movie. It’s one of those medical videos. Fair enough. Then, I scrolled to the name of the video. “Heart Failure, 2”
Heart Failure 2. Like Bridesmaids 2. Or Trolls 2. Only about heart failure.
Here was my "big break." I would play a patient in heart failure for a medical film. But not the even first Heart Failure. Just Heart Failure 2. And you know, I laughed and laughed until tears streamed down my face. Undaunted, I recorded and submitted the tape. I did not get the part. (Someone apparently did a better job of being in heart failure than I.)
Perhaps I will never get a role in this new glamorous opportunity as a model/actress. To me, I'm simply thrilled to have the chance to do something I love, something I wasn’t considered pretty enough to do back when I was actually younger and prettier, because I was also scarred. Now, decades later, as the world is changing, I have a chance to act specifically because I am visibly different, and not despite it. Now, there is even an agency that exists to promote those of us who look different.
I hope I get cast in something, sometime. It has been many decades since Mama Rose chased me off stage with her hat pin. More importantly, I know it could mean a lot to disfigured people out there, to see someone who looks like them on screen. I can only imagine how I would have felt, the Witch who got booed, to see a scarred person on stage. I would have felt proud. I would have felt less alienated.
I also know that the more the general public sees someone who looks like me on screen, the more people will get accustomed to disfigurement. People stare at others when their appearance is surprising. It is natural, simple human nature. But if people who look different appear on screen (not as villains or monsters), our faces and bodies will no longer be shocking. Maybe we can arrive at a day when people see a burned girl in a play and no longer feel feel the need to stare, and god knows, the need to boo. Maybe they will see a little burned girl, dressed up in her Witch costume and simply think, “hey, what a sweet little actress.”
How nice would that be?
Lise Deguire's multiple award-winning memoir, Flashback Girl: Lessons on Resilience from a Burn Survivor, is available for purchase on Amazon, Barnes & Noble, Newtown Book Shop and The Commonplace Reader. Check out her TEDx talk "Scarred Not Scary"