Two weeks ago, I sat on the judges panel for the inaugural ceremony of The Titanium Awards, a talent competition specifically showcasing PWDs (performers with disabilities). The youngest in years and experience was aspiring actor BigNik. He began making comedic videos of himself as a creative outlet while recuperating from a spinal fusion caused by the effects of dwarfism. With a fan base of 2.1 million on Vine, I was humbled by BigNik’s tenacity to succeed in an industry where the majority of its working actors live below the poverty line–all the while enduring the ceaseless pain coursing through his body. As I listened to the piece he wrote for the competition, I was reminded there is indeed an audience for PWDs, so long as the talent is appreciated. I found myself contemplating why there needed to be such a talent show for PWDs like BigNik, winner Paul B. Stevens and second-place finalist Joan Marlowe, when their charisma alone melted away any differences and I was taken in by them as an actor, not a disabled actor.
If you had told me a few years ago I would be called upon to weigh in on performances by actors with remarkable physical backgrounds–I would not have believed you. Speaking with them at the reception, I was saddened to learn that Joan had hesitated before submitting to the audition call because she was unsure if she was disabled enough. An avid actress, hearing impaired all her life, with impressive credits spanning theater, film and TV, she swept me away with her glamour. I felt I was in the presence of a star from the golden era of Hollywood, watching her interpretation of a scorned ex-wife from a Neil Simon play. Stevens, who none would know unless he disclosed his condition, appears to be an able-bodied actor and a fine one at that, having studied directly under Lee Strasberg. He certainly commanded my attention with a monologue on the affects of war; before me, I saw a veteran soldier addressing a classroom, not the man who years ago survived a near fatal car crash leaving him with a brain injury. I immediately empathized and understood the internal grapplings of Paul and Joan, as in the earlier part of my career I had kept hidden what is clinically termed an ‘invisible disease.’
I am an actress living with Rheumatoid Arthritis. I was diagnosed with Juvenile Rheumatoid Arthritis (JRA) at seven. An inflammatory auto-immune disease affecting mostly females, sending pain signals to the brain although no injury has occurred. White blood cells will flood a joint and cause swelling, which if there were an actual sprain or injury, is part of the body’s healing process. With RA/JRA, there is no injury, yet white blood cells flood a joint and over time the heat of the inflammation slowly deteriorates ligaments, bones and muscle. Basically, I’m a living breathing incinerator with a passion for the performing arts that began at a young age.
I was a very active girl who loved taking dance classes and being in TV commercials, so it was a shock when I started falling down out of the blue and complaining of being tired at five years old. Since it’s a gradually deteriorating disease, my mother and I juggled between weeks where I was fully capable of attending school, dance class and castings, and days where I was too swollen and inflamed to turn myself over in bed. These bouts of symptoms are commonly referred to as ‘flare-ups’ amongst us Arthritics.
Although those formative years are a blur now, I do remember clearly one conversation with my mother about continuing in the field of performing arts. I had begun to fall behind in school, missing class not only from my illness but also from being on set. Failing in school added to the burden of feeling apart from my classmates, who had begun to tease me with accusations of being a show off after seeing me on television. I withdrew and clung to the performing arts where I felt the most free to be myself. However, I had developed a slight limp by this time and even in my safe haven on set or in drama class, a self consciousness sprouted. It was a time where inclusion in the mainstream media was not as supported by equal rights groups as it is today. I kept my condition hidden, fearing the same rejection in my career that I’d experienced on the play ground.
Yet, my child’s mind could not fully comprehend why I felt the need to keep my condition private. Yes, my body’s mobility may have become limited, but my skill set remained the same. My gut knew otherwise. Nowhere could I turn on a television set at that time and see a young actress reflecting my life circumstances. My young logic rationalized that if no one like me were a commonality in the films and programs I watched, then there was something wrong with me and like school I would be shunned. So I did my best to be like everybody else I saw in the media: ‘normal.’ I continued to steadily book on screen parts, disguising my limp as best I could. To my relief, I experienced a remission during my teens, but had developed visible deformities in my fingers which added to my self-consciousness. School remained a struggle, but I did manage to form bonds with a crowd who helped me stick up for myself. This social confidence led me to defending others who were picked on–the beginnings of my involvement in the equal rights movements.
With my new-found vigilantism, I could not carry the shame of hiding my condition in my professional life any longer. The truth gnawed at me, literally. I was emaciated, and to continue the charade that I was in fit condition was, by then, comical. The limp had become more of a side-to-side crab walk and fearing people would catch a glimpse of my fingers, nearly all deformed, I kept my hands balled up in fists. Much to the relief of my voice-over agent, who for over a decade had delicately inquired about my health, she embraced my truth and reassured me of her belief in my talent. Her assistant, however, did not share the same feelings, and I was told I would ‘only be represented as a voice-over artist.’ My fears of being rejected had manifested.
Although I continued to book in voice work, I eventually took a much needed heart-break, to realistically assess if I could manage a career as an openly disabled actress. For a brief time, I gave up: That industry insider had told me I would never work in TV or film again, not for lack of talent, but for having an illness. I have days where I still believe her discrimination, even though I’ve just wrapped a short film and closed a stage production. I let the words of that witch cast a spell of doubt over me, and the rage I feel toward someone who could have so negative an effect on an aspiring actor, is the very reason I continue to strive for inclusion of all diversity in mainstream media. It very well may not be me to achieve star status, and not because I am a PWD, but rather one contender amongst thousands of other hopefuls.
I moved to Los Angeles, where I have worked more onscreen as a PWD in my few short years than over a decade in Toronto. Being represented by a theatrical agent who submits me for roles, and not only for roles specifically ‘disabled,’ has shed the shame I felt hiding my illness for all those years: It’s finally safe for me to openly live as a performer with a disability. Safe. Not Easy.
It’s not all sunshine and rainbows in terms of inclusion in mainstream media. We have, as an industry, a long way to go until Art truly imitates life. Efforts are being made by major networks like ABC, NBC and CBS, who now hold annual diversity showcases. Acting unions SAG-AFTRA, EQUITY and the committee I remain seated on, ACTRA Toronto’s Diversity Committee, continue to advocate on behalf of equal opportunity for their members. The Media Access Awards is an annual ceremony recognizing the success of PWDs. The panel I sat on for The Titanium Awards, although clearly in its infancy, is a platform that will hopefully grow in years to come. The entertainment world is progressing in the right direction. My hope is that affirmative action groups will become obsolete, and awards will be given to actors based on their talent and merit, not for outstanding effort within a marginalized demographic.
I have come to know many actors, of all sizes, shapes, ethnicities and genders, who constantly battle with deserting their dreams for a steady paycheck. Heck, I know able-bodied Caucasian actors who now feel like a minority because they’re not “ethnically ambiguous” enough. Or are insecure because they have not been cast in a paid production for a substantial amount of time. This is a hard profession and I applaud anyone who keeps on keeping on.