The Importance of Including the Disabled Designers

This piece uses identity-first language, which is preferred for many disability activists. For example, this would mean calling someone a disabled person instead of person with disabilities.

American theatre is slowly waking to the idea that equity, diversity, and inclusion is not only a good idea but is essential to our art. Disabled characters should be crafted with nuance and depth, people of color need to be on our stages in non-appropriative fashion, women need to be treated equally and with respect, LGBTQ+ people need to be embraced and not used. Our stages and our audiences must represent the kaleidoscopic panoply of the human experience. While many theatre artists today acknowledge the power of diverse lived experiences, one thing we are still missing is disabled designers. Where are they, and why aren’t they employed?

Mallory: Michael and I started this conversation over a decade ago when I was working on my thesis, “The Inclusion of the Disabled Theatre Artist.” My advisor told me he had no idea how I was going to work in costume design with a disability. Not exactly the most supportive words, but this started me down a rabbit hole of disability consciousness. My awareness of my own internalized ableism was fleshed out as I read through Carrie Sandahl’s Bodies in Commotion and Paul Longmore’s collection of short essays called Why I Burned My Book. A world unfolded of disability injustice and metaphorical representation of disability in performance. Only one book was written by a disabled sound designer—Jim Lebrecht, whose most recent project is a documentary film called Crip Camp.

wheelchair user in dramatic lighting in tin metal costume from head to wheel, saw blade on top of head and shoulders, metal-plated corset and metal skirt

Regan Linton as the Tinwoman in PHAMALY Theatre Company's The Wiz, costume design by Mallory Kay Nelson, makeup design by Todd Debreceni, photography P. Switch.

Beyond Jim, I located fewer than a dozen designers and technicians with any disability working professionally in the American theatre industry. This included Michael, who was managing the lighting and video department at the Oregon Shakespeare Festival (OSF) at the time. The standard I used in my search was “gainfully employed,” a measure employed by Social Security to decide if someone is eligible for any disability benefits. In other words, I was looking for designers who worked full-time in their craft rather than designers who designed part-time or designed to supplement a separate full-time job. My research was done in 2009, a little over ten years ago. So, since then, has anything changed?

I have an empathetic understanding of a range of disabilities. I became an amputee in 1998, and a couple of invisible physical disabilities came with it. (On top of which: I am dyslexic.) I often change how I move around throughout the day, depending on the task; transmobility has given me a view of the theatre from a spectrum of disability. It has also shown me that we have a long way to go to making theatre accessible and inclusive for disabled designers.

Having an ally in the room helps, but having a comrade-in-arms in the room is where brilliance happens.

Many people believe costume design can’t be done from a wheelchair but there are several parts that can be, like doing visual research, creating renderings, and collaborating on the curation of the storytelling. Other elements are more difficult. It’s like a game of Tetris: trying to figure out how to physically get to the costume shop and theatre, thinking about how many “spoons” of energy I have on any given day, and strategizing each piece of my design into place before opening night. Navigating a disability while designing is not much different than what anyone in theatre does to get the job done. I just happened to be playing at expert level before I officially started my career in theatre.

Michael: I acquired my disability in 2003. I had already established my career in theatre as a master electrician and as a freelance lighting designer before I became disabled. I am not sure if it would have been possible for me to continue in my work if I were working anyplace else. Having a “house gig” allowed me the time to figure out how I could best work post-accident. The privilege of an established career is quite clear. I believe in many ways it disqualifies me from the conversation because I didn’t have to prove myself capable of working in theatre while disabled. Yet I still must navigate the theatrical world as a T-9 paraplegic. Being one of the few designers with disabilities that Mallory was able to find back 2009 has opened my eyes to our failure as an industry to be inclusive of people like myself.

two actors onstage

Alice Sheppard and Laurel Lawson in Descent by Kinetic Light. Lighting and projections by Michael Maag. Photo by Jay Newman.

Mallory: The majority of my success in costume design was accomplished before I finished my MFA. I was the resident costume designer for Phamaly Theatre Company—a Denver company that exclusively features actors of all natures of disability—between 2003 and 2008. I saw the disabled body as a new canvas each time I came to the drawing board. Working with disabled people meant me asking tricky questions like:

  • How do you like to get dressed?
  • What would you like me to know about your body?
  • What would you like me to know about you?
  • How will this inform your character and tell our story?

As a disabled person myself, these conversations were an opportunity for me to truly connect with the artist; having an ally in the room helps, but having a comrade-in-arms in the room is where brilliance happens. Because I have a visible physical disability, other artists knew I was listening and would hear their concerns without macroaggressions and ableism. This is still true today.

Michael: Lighting and projection design appear to be jobs easily accomplished from a wheelchair—until you dig down into what is actually expected of a designer. When working with smaller companies or at underfunded jobs, the designer is also expected to hang and focus lights and projectors, run cables, load weights, and more. Even if the expectations do not include the lighting technician aspects of the job, the long hours and short breaks require extensive planning for someone with a disability. Real problems like UTIs or pressure ulcers can result from the established, busy work schedule.

The authenticity of disability culture is unsupported when merely one disabled person is in the room.

Mallory: As designers with disabilities, we are expert at managing healthcare, mobility devices, alchemy, space, time, and doing what many consider impossible. Most of our skills aren’t on our resume, as disability isn’t seen as a career. A skill that we’ve both mastered is delegating.

I don’t believe there is a way to get my work done without a hand here and there. During college, I was accommodated with a work-study student for about a quarter of my work time, but this has been hard to acquire outside of a university setting. Most, if not all, the accommodations I received in my higher education experience are not available to me now. The Americans with Disabilities Act has supported many disabled people into employment through reasonable accommodations, yet most theatre companies are still only considering accommodations for their audiences and not their employees.

T-girl in pink polkadot top swimsuit with blond wig and kitten pumps, Mallory standing with arms up and crutches hanging, putting finishing touches on

Transformations by Gina, costumes by Mallory Kay Nelson, photography Gina Jet Ortiz.

Michael: We encourage other professional theatre artists to collaborate and experiment with us to design accommodations just as we work together to tell a story. We have the tools in place to work with disabled designers even if the industry does not know it. Theatre practitioners, understandably, get caught up in the process of making a show ready for opening night and rarely have the time or energy to make it an inclusive process. That is changing for the better for many marginalized groups, but not as quickly for the disabled community.

Mallory: For over forty years, the standard has been a few disabled actors sparsely spread throughout our theatre and performance community—and it hasn’t actually changed much other than a few more articles written and few more actors cast. If you know Malcolm Gladwell’s work The Tipping Point, you might recognize that the tipping point of our inclusion has yet to be fully realized. In the short-term, we need more designers with disabilities to answer the clarion call. We need to become a presence in the theatre commensurate with our percentage in society. The authenticity of disability culture is unsupported when merely one disabled person is in the room. That role is sometimes represented within the acting community but they have been given no comrades or collaborators with a lived experience of disability. Have you ever felt like the only one in a room who represents your culture? Have you seen what is created when someone with a full understanding of your experience collaborates with you?

Nothing about us without us” has been our culture’s battle cry for justice throughout the disability rights era. We want to collaborate with other designers with disabilities to make our designs better. We want to be present when an actor with a disability is taking the stage to support them and pull the best performance out of them. That same ambition applies to all of us who call ourselves theatre practitioners. We can all be better artists with inclusivity. The same principles apply on a philosophical level: overcoming ableist bias and including disabled people is essential to our community’s storytelling. It will make our stories—and therefore also our society—a better place where people can find belonging.

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Thoughts from the curators

Accessible and inclusive theatre is not new. Nevertheless, more often than not, theatre companies today that are striving to include the disability community do so by welcoming disabled actors to their stages and disabled audiences to their performances. Yet there are dozens of jobs, on stage and off, beyond performers and patrons. In this series, a variety of disabled theatre artists: managers, designers, producers, and dramaturgs, will share how they do their work, as well as their vision for an accessible future in professional theatre. This series is curated by National Disability Theatre, which believes disabled artists and artisans are an asset to any theatrical process or production.

The Future of Theatre is Accessible

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My department has a huge impact on the successful navigation of all employees within our buildings at OSF.  Most acutely our colleagues with mobility disability.  We move tons of scenery and equipment every day.  The coordination involved in moving that stuff every day blocks doors, hallways, exits and ties up elevators.  Awareness of our colleagues access to our spaces requires constant vigilance.  Normalization of that awareness is my current challenge.  As folks navigate the needs of our rep, I am working with my department on recognizing and acting on access needs.  Finding ways to encourage them to conduct their techs, shows, change overs and strikes with an added access lens.