Author’s note: The tone and content of this article are meant to be inquisitive and focused on disability, creation and innovation. I think it’s important to note that my thoughts are with those who are and have been affected by the coronavirus.
I have not professionally performed live since I was diagnosed with multiple sclerosis (MS) in April 2017. On March 30, 2020, I was supposed to head into a solo residency hosted by Why Not Theatre to create an autobiographical work that would act as my return to the stage. Due to the global pandemic we’re facing, that has been postponed.
The residency cancellation itself was not the catalyst for writing this reflection. Instead, my motivation came from the ideas I was so eager to explore and from what this pandemic has done to deepen that research.
Since my diagnosis, I have managed to maintain a career as a choreographer and movement director; I even went back to school to get my MFA in dance. So, despite this setback, I have managed to stay active in the arts. I have, however, intentionally avoided the feat of live performance.
MS, an autoimmune disease that preys on my nervous system, creates several challenges in my life. It predominately affects my feet and legs — great for a dancer — as well as my energy levels, stamina and cognitive processes. I am episodically disabled, meaning I have good days and bad days, even good weeks and bad weeks, creating a variability in my abilities that is hard to manage and plan for. Some days I am legitimately fine, clear-minded and physically strong, and other days it’s as if I’m Superman near kryptonite — I’m foggy, confused and physically weak.
I have been fortunate in my post-diagnosis career as a choreographer, teacher and student to have every accommodation that I have required met. I am thankful to the collaborators that I surround myself with for that. For example, I’ve taught sitting down on days when I couldn’t feel my feet, or have been given an extension on an assignment when my MS was particularly bad. But every time that I’ve suggested the idea of performing with the condition that I may not be able to physically perform on a certain day, the response that I get is curious but apprehensive of how that would work, especially from a monetary perspective. This signals to me that we’re able to let disabled artists in to a certain extent, but we might not be willing to break the system.
Because of this, I don’t quite fit in the creative system in which we, in Western theatres, have traditionally produced work. In the three years I’ve lived with MS, I have not been able to maintain a consistent training schedule or routine. I find myself yielding to my body and its needs on a day-to-day basis. Needless to say, this goes against everything I learned from my rigorous dance training while growing up. Changing careers has always been on my mind, but my passion for movement has kept me here. I believe that where there is a will, there is a way. Even if it’s a painfully slow-moving — or excruciatingly turbulent — way, it’s still there.
Over the past year, I have been conceiving a project that would refocus the lens of my praxis, unpack the methodologies that I was trained with and reshape my approach to creation and performance to get my feet back onstage. I was venturing into the residency this spring to tackle the following questions: “How do I create a live performance as variable as my disease?” and “How do I create a show that I don’t necessarily have to show up for?” And then this pandemic hit.
As restrictions on public gatherings have tightened, the art world has begun to change. Theatres are releasing videos of past performances, script readings are turning into online video chats, “at home” creations are receiving funding and virtual festivals are popping up. I’ve witnessed thousands of people in thousands of ways adapting to the situation they’re now in and ensuring the accessibility of art. I see a system trying to recreate itself. From a disability and accommodation standpoint, this has been spectacular to watch. Welcome to our world, World.
I never had the intention to create a work to perform from my living room, or from any location outside of a theatre for that matter. My intention was always to put my physical body in front of a physical audience. I’ve created several dancefilms (including a short film about my MS diagnosis) and do enjoy working in that medium, but screendance is not live dance. During my postponed residency, I wanted to explore physical variance and possible accommodations for live performance. I don’t see “from home” creation as a direct link to the research I was doing for my body specifically. What I am seeing, though, is possibly more important: the global community called on to question the structure in which we work and produce art and to accommodate alternative situations.
How can all of this innovation be leveraged in a post-pandemic world to make our rehearsals, performances and workspaces more accessible?
Disability arts have always been seen as a subsection of “real” art or, to be frank, “able” art. My hope is that we move out of isolation with a more integrated approach and that we think more about who is in our rooms and how we get them there. Having MS shouldn’t be the end of my performance career because I don’t fit into the producing model in Canada. I believe we should be reviewing that model to see how it could fit someone like me. Disabled artists have been advocating for accommodations like these for a very long time, and while they might not have all the answers, they are experts in the field. An artist who is disabled will know exactly what accommodations they need; I’m here to remind you to ask them what they are and to make it work. I hope the changes we’re seeing will make our industry more open to accepting accommodations and will inspire you to interrogate the system in which we create.