Designing With A Movement Disorder:
Being a set designer with Dystonia
In the fall of 2013, about six months after I turned 30, I could sense that something was drastically changing within my body. Muscle twitches, painful cramps, and strong neuropathic pain became a daily occurrence. My right hand began to shake without stopping and I developed a limp and dragging foot in my walk. My sense of balance was off and I experienced several falls while walking within a year. Some days my entire body would be stiff and slow and it felt as if I was walking against the pressure of water in a swimming pool for an entire day. On rare occasion, my face would appear as if I unknowingly had a stroke. After being shuffled around from doctor to doctor, and going through an extensive amount of testing and imaging, I received a diagnosis of Dystonia with atypical parkinsonism. One way to think of this condition is sharing traits with Parkinson's Disease without the condition being neurodegenerative. Parkinson's disease is caused by cellular loss in the putamen within the basal ganglia of the brain whereas Dystonia is caused by a misfiring of neurons or dysfunction in a similar location.
Dystonia is caused by incorrect signals from the brain
Dystonia causes uncontrollable, and sometimes painful, muscle spasms and tremor-like muscle spasms
Dystonia is the third most common movement disorder behind Parkinson's Disease and Essential Tremor
Dystonia can affect both children and adults
Dystonia can affect any region of the body including the throat and eyelids
Dystonia is a lifelong condition
There is no cure for Dystonia
It is estimated that 300,000 Americans have Dystonia
Click here for Dystonia fact sheets.
The Reality of Studio Work with Dystonia
As a set designer who primarily works with my hands and body, this discovery was terrifying. It had only been four years since I received my MFA from NYU and I was facing a major roadblock in an already difficult-to-navigate profession. My hand tremor makes model building painful and slow, and working too long at the computer often means cramps, spasms and sever pain in my fingers and forearm. As not every project I work on provides assistant funds, I can not rely on help. My condition also means I require more sleep and rest than most, so my awake working time becomes squeezed. Between fatigue and chronic pain along with constant involuntary muscle movements with the equivalent of burning the same amount of calories as a 6 to 8 hour workout, my job has gotten a lot tougher--both physically and emotionally.
When I was first facing the realities of my disablity, and after discussions with my movement disorder specialist, he suggested I apply for partial disability benefits so that the pressure to do as much physical work to make a living was less. However, he warned me that almost no one in my situation has qualified.
After applying twice with an appeal, I was denied. My options were limited. After seven years of higher education in my field (and only my field) and a mountain of student loans staring at me, all I could do was to stay the course.
Fortunately now, laser cutters and 3D printers are able to do the majority of heavy lifting when it comes to model making and as soon as I can afford to make these investments, I will.
Experiences of Ableism, Micro-aggressions and Roadblocks
Not only did the physical difficulties related to studio work remain, but I often felt stigmatized or misunderstood by collaborators as well as the theaters I worked for. Thankfully, the United Scenic Artists standard agreement has many provisions that can protect those with disabilities, but, not every theatre company appreciates or respects these provisions or consistently recognizes the need to follow them. It is easy to fall into a situation where you are trapped without a career savvy choice.
On the first day of rehearsal at a well-known L.O.R.T. summer theatre, I was publicly shamed by the artistic director in the parking lot as everyone was making their way to their respective modes of transportation after a first rehearsal. I was entering the car of a company management intern when the artistic director publicly shamed me across the parking lot: "It must be nice to be driven everywhere". The entire company could hear this as we were all exiting the rehearsal space. I cannot drive.
On a 'project only' USA agreement with a well-respected theatre company on Long Island, I was designing a very large musical with about fifteen unique sets. The build was alarmingly behind and on the day before the first preview the artistic director approached me about helping out with the scenic painting regardless of the stipulations within my contract. I know that many set designers have found themselves in similar situations and have had to buckle--especially considering that press would be arriving the next evening. One of the realities of my hand tremor is that I lose total control when my hand is performing against gravity without support of a horizontal surface. As the hard scenery was all in place, any painting would be done against gravity. I did what I could, but the end product was not as designed and my hand and arm experienced a week's worth of pain related to the work.
While working on an off-Broadway contract, I was informed that there was money for a TD but not for a build crew. Before being told this, the set was designed and approved by the producer and director. I had to make a choice: step away from the this show and loose the fee, or help with the build and deal with the physical repercussions. With hopes that this project may have a future and wanting to please the director--both my agent and I were stuck. After much consideration I agreed to help as I could; but it was not without an extreme physical toll on my body and mind. Upon sending an hourly invoice for the help I provided along with a curt email explaining why this was unacceptable and that I had done my best regardless of my disability, the theatre in which this set existed decided to use my set for future performances without compensation. After a toe-to-toe with my agent, I was compensated a measly additional $50 for the subsequent performances taking place on the set I had designed as well as helped to build.
"Networking" has become my least favorite word--it's something I used to love. In New York City this means going to small spaces with many people and very little room to move. With the onset of a limp and balance issues, euqittably existing in these spaces is impossible. This kind of networking, is in fact, a roadblock for those who cannot navigate these kinds spaces--and yet, these kinds of events are where foundations for future work are often forged.
Physical Disabilities & Theatre Making
The theatre lauds physical ability--in fact it centers it at its core. Can you sing? Can you dance? Can you paint 65 costume sketches? Can you build 12 versions of the same scale model? Can you paint a set if I can't afford a painter? The idea of "performance" in regards to one's "ability" becomes the litmus test for hire. We all get "auditioned" regardless of the job being hired for, but does the hiring processes see past intrinsic biases regarding "ability"? Do directors and producers unknowingly make judgments because someone has a limp or uses a walker? Or better yet, can they imagine or reimagine a production where there is room for people with disabilities? Are they even thinking about it? Is it in their consciousness?
Disability is one of the easiest human experiences to dismiss--the easiest to unsee. And truthfully, if my disability isn't being dismissed by others, I may even be dismissing it myself due to insecurity or an engrained work ethic centered around physical ability as a job requirement--even if my contract says otherwise.
Twenty-percent of the population has some form of disability, so why is it uncommon to see disabilities equittably represented onstage outside of tropes or plot devices? If we don't see it onstage, are we likely to see it offstage? What are theaters and theatre companies doing to provide space for people with disabilities? If you are reading this blog post, please also read Ryan J. Haddad's useful and instructive article in American Theatre Magazine.
What can theaters and collaborators do to uplift and support designers with disabilities?
Actively hire designers with disabilities and continue to do so. Our voice is not in the room if we are not in the room.
If you can't afford to support a designer with or without a disability with the execution of their design, then you can't afford a designer to begin with.
If your programming includes stories that center disability, be sure to hire not only actors with disabilities, but creative teams as well.
Remember that designing and facilitating are two different things. Provide designers with the technical and physical support needed to see their designs executed according to their vision. Recognize this as a contractional obligation.
Recognize, represent, and uplift people with disabilities on your stages, in your board rooms, in your offices, at your tech tables, and in your audiences.
If you sense someone has a disability and you are curious what you can do to support them, use phrases like: "Can I ask you about __________?" & "Is there anything I can do to support you?"
Do not use the following words when discussing disablity: handicapped, differently-abled, special-needs, crippled, gimp, limited, abnormal, impaired, afflicted, unfortunate
Don't exclude collaborators for reasons associated with their disability.
Don't make assumptions about what someone can or cannot do based on their disability.
Understand that disability comes in many forms. Some disabilities are "invisible" and not easy to identify.
Think radically about accessibility. Are you providing access to everyone or working toward it?
Leading the Way
Theatre Breaking Through Barriers and National Disability Theatre are two professional theatre organizations whose missions are centered around providing artists and audiences with disabilities theatre homes. Theatre Breaking Through Barriers serves as an Off-Broadway theatre company "dedicated to advancing artists and developing audiences of people with disabilities and altering the misperceptions surrounding disability by proving, once and for all, that disability does not affect the quality or integrity of our art or artists." National Disability Theatre uses a co-production model "to collaborate with professional regional arts organizations around the country to make theatre accessible— on stage and off."
If you are a theatre artist looking to center disability, supporting, partnering, or learning from these two organizations is a great place to start.