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Wheelchair Ramp to Your Heart

Living with an Invisible Disability in the Arts

I am really happy that with the advent of Spring Awakening on Broadway we are having a much needed conversation about how performers with disabilities are excluded from the arts. As an artist with a disability, I feel that it is vital. But for a good chunk of the disabled population, it still may not be enough. I have three “invisible disabilities,” which are exactly what they sound like. They are disabilities that debilitate someone, but aren’t really apparent to the outside world. I was diagnosed with Tourette’s Syndrome (TS), Attention Deficit Hyperactivity Disorder (ADHD), and Obsessive Compulsive Disorder (OCD). What I found is that people who you would never think of denying a job to a theatre artist in a wheelchair, can commit discrimination against an artist with an invisible disability without even knowing it.

Why does this happen? Well for the most part, they don’t even know they have such a person standing right in front of them. That’s where the invisible half of the term comes into play. So if the disability is invisible how could someone possibly discriminate against it? They see the symptoms, but think it's something else. A lot of the body tics, vocalizations, and behaviors my TS and other disorders make me perform don’t look like I have a disorder. They look like everyday behaviors or actions that occur frequently, or at weird times.

Accommodations for most performers with disabilities come in the form of renovations to a physical structure. Accommodations for people with invisible disabilities require a change to an internal people structure.

My worst offender is a throat-clearing tic I've had since high school that makes it sound like I’m laughing. This tic is all well and good if you think I’m a guy with a great sense of humor, but what if I was making this sound onstage during a time that calls for quiet? What would you do? The very first backstage job I had in a high school play I was replaced because my theatre teacher told me that she could hear me from the audience and that could be distracting. She told me that because of my Tourette’s I most likely was never going to get a position backstage again. So then I started auditioning for shows onstage. Then, she started talking about my nervous energy (read “body tics making my hands and legs shake.”) I had one role with her and she told me that unless I could control my vocal tics so that she couldn’t hear them, she would have to cut me from the show.

In my first two years of college, I would get a lot of remarks about how I would look nervous or that I stammered on a line in auditions. I spent a lot of extra time in the studio doing movement exercises to hone my skills, but it was a struggle. While working tech for a show, I was often told to turn my headset off because of my “heavy breathing” (read: throat clearing tics). It was always more convenient for people throughout my entire career to believe that maybe I just didn’t have the talent for what was required of me, or that I was being a jerk; most of the time I didn’t bother to tell them any different.

two actors at a reading
Ricky Young-Howze (center) with Wendy Marie Martin (left) and Martha Boswell (right) prepare for a workshop play reading at The Hollins Playwrights lab. Photo by Dana Howze.

So, why didn’t I just sit people down and let them know that I had a disorder and that these things weren’t my fault? Most of the people that I did tell at first would just shrug their shoulders and wonder what that had to do with them. My theatre teacher in high school, an expat from off-off Broadway in New York with her husband, was way more interested in making professional level theatre than working with me. Also most people with disorders like this come from a background of bullying, or people thinking that we’re making it up. We’re usually too scared to speak up.

At the end of my undergrad career, I gave a speech in front of a mixed crowd of students and professors about this very issue. In that speech, I said that I was determined not to call in sick because of my disorders, or to ask for any accommodations. I believed that either no one would believe me, or that I was just putting a target on my back. One of my professors approached me and told me that she was hurt that I felt that way. She wanted to assure me that if I had come to them from the beginning I would not have had so much of a struggle. I told her that I had never seen any reason why they would when so many other students I had seen with mild cases of autism, problems fitting in, or ADHD not even getting as far as I did. They had an office of disability affairs at the school to help you with class work, and an elevator, and wheelchair ramps all over the building, but I had never seen anything from them that made me think that they would make their programs more accessible for me and people like me.

I spent my entire undergrad career trying to act as “normal” as possible and not ask for help. Accommodations for most performers with disabilities come in the form of renovations to a physical structure. Accommodations for people with invisible disabilities require a change to an internal people structure. I need a wheelchair ramp into your heart and mind. I can sense the moment I walk into a room if you are willing to see past my tics and body and see the brain and talent that built the resume that I have. Accessibility for someone like me can be as simple as believing that I have a problem doing something that you think is normal. It could be as simple as knowing that even though it takes me a long time to say something, I actually have something important to say. And to remember, most importantly, that I may not really be laughing.

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Thanks so much for writing this, Ricky. I'm an autistic actor who is also legally blind. Bravo. Thanks for sharing.

Thanks so much for starting this conversation, Ricky, as someone who is working with an invisi-disability, and serving as primary care-taker for someone with with very visible disability, this is something I think about often. As you very rightly point out, the struggle to have have the conversation (both in writing about it, and in the day-to-day practice of working) is often the biggest hurdle.

When I was first diagnosed with M.S., I kept it pretty much to myself and within a small circle of friends - I was afraid that it would scare people out of working with me. Looking back, I can see how self-limiting this choice was. M.S. is very unpredictable in its effects so I became afraid of committing myself things, afraid I would let people down (so I pretty much ditched acting completely), or be seen as someone who was ill/unfortunate/to-be-felt-sorry-for. As someone whose disability is mostly invisible, you hear what people say about "that guy with the funny walk" or "that guy who keeps clearing his throat" (obviously not a totally random example) - so the fear wasn't unreasonable... but it also wasn't very productive artistically.

Over time, and as much as I hate - and mean HATE - to admit it (because I hate to think that M.S. actually did something good for me), living with the knowledge that I could be hit by the M.S. truck at any moment led to the realization that any of us could be hit by a real truck at any moment. I was just more aware of it because I had this truck just sort of trailing behind me all the time, motor running. While the realization helped me to be more open about my M.S., and accept it as a part of the lesson plan the universe seems to have for me, in practice it remains challenging. Since it's mostly invisible it's weird to bring up, and often confusing - after all, how do you accommodate a disability that comes and goes? That may or may not show itself in the process? How do you accommodate a disability brings something unexpected to the table, something you can't necessarily control?

Of course, the truth is we don't control much of anything in this life, certainly not in theater. Shit happens all the time. The show goes on. I doubt that working with with someone with a disability (visible for not) is going to make things any more or less chaotic than they already are. In fact, having some chaos you can count on might be a good thing - a reminder that we are all human and full of faults and quirks and tics... and yet we manage. Still, people don't necessarily want all that humanity interfering in their attempts to... create a reflection of humanity. This isn't a complaint. It's just a truth. After all, we have limited time and limited funds and a vision to to realize. But wouldn't it be great if we could start thinking about ability/disability in the same way we're learning to see gender? - as a complex continuum that contributes to the richness of the human experience, rather than a limiting either/or proposition?

I'm not sure exactly what my point is here except to say, RALLY ON, RICKY! And thanks for opening up this door - I'm am guessing there are more of "us" out there than any one knows.

Hi Jeni,

This is Ricky. My Mother has had MS since I was born and I saw how it affected her life. I totally appreciate all of your kind words. You were right that we artists with a disability know chaos very well and that can make us perfect for the chaotic world of the theater. Rally on yourself and wear your scars as a badge of honor. Have an awesome day.

Have to commend you for your bravery in starting the conversation here.

I am also an actor who happens to be a member of the handycapable community (some of mine is visible and some is not), so a lot of what you're saying resonates here too.

Not sure how things are out there, but Europe only just took actor off the exempted occupations list (the professions you're allowed to discriminate in) as of last April (I know, ridiculous right?!).
So, it would be reasonable to think that the industry is improving? Right? - sadly not.

Within the last four months, I've been asked to leave auditions on arrival twice - once because 'we don't envisage this character with a disability' and once because 'we're not out to make a statement with this project', worked with a director who actively tried to bully me out of the production because 'disabled women aren't saleable', and with a Stage Manager who virtually had an apoplectic fit when he realised that someone who walks with a mobility dog, doesn't miraculously not need them in the wings and on stage.

It's early days, but there really is a desire for change here - particularly the Equity diversity officer in UK is brilliant!
...for my part, I've designed a fully accessible theatre (- I now just need to find someone to build it).

I'd be interested to brainstorm with you at some stage and see if we can't come up with something to 'be the change' if you're interested?

Hello Ricky, I found this a really compelling article. I loved reading it and read straight through and then started over again. You write about your experiences with a beautiful combination of objectivity and a kind of subjectivity that calls your readers to be empathic. I have a question as to whether the meds for the ADHD might have affected the ticks - no need to respond here, but I wanted to share my experience. My son was prescribed something years ago for ADHD which gave him fantastic concentration, but suddenly he developed two tics - a throat-clearing and a sort of grin that he could not stop himself from doing. (It was a compulsive face-stretching that looked like a huge grin, and he would do it several times in the course of ten minutes) The med was called CONCERTA, and when I read into all the minute side-effects, sure enough, I read that people pre-disposed to tics would possibly find them exaccerbated with Concerta. So we had to ditch it. I've checked with my son that he doesn't mind my sharing this information (he is glad to share it), but just wanted to let you know our experience with this med just in case it is one of yours. (I had noticed when I first adopted my son, at age 8, that he had a self-scratching tic - he had little scratches all over his arms that he was not aware of making. They disappeared over time, but I was always aware that he was pre-disposed to tics and so when they resurfaced, this all made sense. It took a few months for the tics to stop after discontinuing concerta, but they did). But apart from this, I just found your honesty and un-self-pitying approach really wonderful and thought-provoking. I'd love to know of solutions you have thought of - which people may not have taken on board - for how you could participate in activities without the distraction of the sounds. For instance, if you were talking to me over a mic, and I knew you had a throat-clearing tic, it wouldn't bother me at all. I would know you were not doing it to irritate me. I would get used to it.