The Rebel and the Reformer

By Courtney Suciu

The recent death of former U.S. president George H. W. Bush has brought attention to his legacy, including the influential Americans with Disabilities Act (ADA)¹.

Passed in 1990, this historic civil rights legislation was founded to protect people with various physical and mental challenges from discrimination in all areas of public life, such as schools, workplaces, transportation and telecommunications, as well as to establish regulations for accessibility in privately-owned public spaces, including retail shops, recreational facilities and restaurants.

As a result of this law, people with disabilities (which includes 1 in 5 Americans, the U.S. government reported in 2013²) have had increasingly visible and active roles in society beyond the ways that are specifically spelled out in the ADA – such as in the arts.

We’ll explore how the ADA has also emboldened many people with disabilities to participate in their communities, shape perceptions of themselves and express their experiences through the arts.

Ableist depictions of people with disabilities

Problematic characterizations of people with disabilities abound in Martin Norden’s book, The Cinema of Isolation: A History of Physical Disability in the Movies,³ published in 1994, shortly after the ADA became law.

“In the case of people with physical disabilities,” Norden wrote,

the movie industry has perpetuated the practice of isolation – stereotypes so durable and pervasive that they have become mainstream society’s perception of disabled people and have obscured if not outright supplanted disabled people’s perception of themselves.

According to Norden, stereotypes blight representation of people with disabilities in film by depicting them as the “demonic cripple” (think Captain Ahab of Melville’s Moby Dick) or the “charity cripple” (like Tiny Tim in Dickens’s A Christmas Carol). In doing so, disabled characters are “reduced to objectifications of pity, fear, scorn, etc. – in short, objects of spectacle” used to entertain “the able-bodied community” and contribute to “a sense of isolation and self-loathing among audience members with disabilities.”

Such objectification alienates people with disabilities from mainstream society, Norden continued – both on-screen and off. The resulting images “are often far removed from the actual experiences of and lifestyles of people with disabilities,” Norden observed, which only perpetuates the social distance between those who have disabilities and those who do not.

But Norden offered a solution for how we might overcome this chasm. With increased integration of people with disabilities into mainstream society, differently-abled people have more opportunities to get to know each other and discover the ways we are more similar than not.

And this is the kind of opportunity Norden felt the fledgling ADA could provide artists with disabilities:

We need to keep making progress in this area, and advancements in social policy – most notably the passage of the ADA (…) – will aid and abed our work. If we don’t, the ancient stereotypes will continue to guide mainstream society’s perception and treatment of its disabled minority in life as well as in the movies.

“Disabilities arts” and guiding mainstream perceptions

Fast forward to 2018 and a roundtable discussion⁴ on “disability theater” with Joan Lipkin, who co-founded The DisAbility Project in the ‘90s as one of the few theater groups in the country producing original shows to promote disability rights. She was joined by performer/playwright Ryan Haddad and interviewer Anne M. Fox in conversation about the meaning and significance of “disability arts."

Haddad explained:

Disability arts must showcase the work of a disabled artist or artists. The subject matter of the work need not be about disability itself. However, I don’t think the reverse is true. A work of art should not be considered disability arts if its subject matter relates to disability but disabled artists are not active participants in the creation or execution of the work. This is expressed by a phrase that is often used in the disability community: “Nothing about us without us.”

“I’m not interested in nondisabled actors wowing us with their portrayal of a disabled character,” Lipkin added. Her priority had been to “create a space for people with disabilities who are more typically denied representation…[and] helping to center people with disabilities in their own narratives.”

The goal for “disability arts” is not to exist in isolation, according to Haddad, but to be integrated in the mainstream. By increasing mainstream exposure to artists with disabilities, there is potential to “change hearts, minds and perspectives” on what it means to be disabled, he said, “and explode the limited scope of disabled narratives.”

But Haddad also urged artists with disabilities not to wait for someone else to cast them or to say “yes” to a project. “Make your own work,” he advised. “Make yourself the star. Find a platform to showcase whatever it is you do best.”

“How do you know who’s you?”

For some artists with disabilities, the creative process is a way of discovering who they are and what they can do best.

This was the case for Gregg Mozgala and his partnership with unconventional choreographer and dancemaker Tamar Rogoff. The pair first met in 2008 after Mozgala, who has cerebral palsy, captivated Rogoff with his performance in Romeo and Juliet. “He had enormous energy,” she told Rachel Caldwell of Dance Teacher magazine⁵. “He could leap across the stage on those crazy legs.”

She wanted him to dance in a new work, Diagnosis of a Faun and Mozgala, an actor who had no experience as a dancer, said “why not?”

Rogoff’s fascination with the human body and how it moves was in equal parts inspired by growing up the daughter of a rheumatologist who encouraged her interest in medicine, and by her formal training as a dancer. This led her to teaching “variable populations,” including people in nursing homes, psychiatric hospitals and prisons, to dance. She saw dance as a means of empowerment that would help her students “have the sense of feeling right in their bodies and not that feeling of being in an institution.”

“I don’t work with people with disabilities,” Rogoff told Caldwell. “At least I don’t think of it that way. I’m a choreographer, and my interests as a choreographer are in bodies.”

Yet, despite her experience, when Rogoff started working with Mozgala, she was surprised at just how limited his range of motion was. So, for hours a day, every day for a year, the two of them worked one-on-one to help him “reorient himself in space” and let go of the tensions he involuntarily held in his body. Their transformative journey unfolds in the film Finding the Faun⁶ – which is itself a stunning work of art where we witness dance as the way different bodies learn to listen and respond to each other.

In the film, Mozgala spoke candidly about his experience with cerebral palsy, how he felt he is not in control of the tension that twisted his limbs and caused his body to lurch and spasm. When he compared it to being hijacked by his brain, Rogoff asked him “How do you know who’s you if you’ve never been you with the [cerebral palsy]?”

“That’s what’s weird,” he admitted:

I created a whole thing outside myself, right? The disability was a thing…I gave it a name, I gave it an identity, I gave it all this stuff. But you know what? It’s me. It’s really me. It’s like what the f*ck do I do? It’s not the me I want. It’s not the me that I have any control of. You have to obey. I have something in my brain telling my body to do something else.

Living in a wider world

Prior to meeting Rogoff, Mozgala was told that there was nothing else that could be done for his condition – which was the same thing he’d been told his whole life. There was an expectation that with time, he would likely be confined to a wheel chair.

But through dance, Rogoff and Mozgala discovered surprising ways he could move and use his body. Gradually Mozgala was able to stand up and place each foot entirely on the floor and walk heel-toe in a straight line – something he’d never done before.

“I have achieved something that I somewhere in the back knew it was always possible, which was that my body is capable of something miraculous and transcendent,” Mozgala said. “And I did it.”

“While Mozgala will always manage the symptoms of cerebral palsy,” Caldwell wrote, “his alignment, level of pain and walk have significantly improved.”

In 2017 Rogoff debuted her most recent work, Grand Rounds, an experimental dance piece that tells the story of a family dealing with the death of a loved one. It features a “multigenerational, mixed-ability cast,” including a doctor with no experience as a performer, a woman with Parkinson’s and two transgender men, according to Caldwell.

“I mix and match to tell a story because I think a story has characters and characters are not all 28-year-old dancers in good shape,” she explained. “I like to live in a wider world than where I was going when I was in Martha Graham’s class.”

For further research

Disability in the Modern World: History of a Social Movement is a landmark online collection to enrich study in a wide range of disciplines from media studies to philosophy. Resources include primary sources, supporting materials, and archives, along with 125 hours of video. The content is essential for teaching and research—not only in the growing disciplines of disability history and disability studies, but also in history, media, the arts, political science, education, and other areas where the contributions of the disability community are typically overlooked. Greg Mozgala, actor and playwright as well as the Artistic Director of The Apothetae, is on the board of advisors and contributors for this database.

Ebook Central

Hadley, B., & McDonald, D. (Eds.). (2018). The Routledge Handbook of Disability Arts, Culture, and Media.

Jackson, N., & Shapiro-Phim, T. (Eds.). (2008). Dance, Human Rights, and Social Justice: Dignity in Motion.

Kuppers, P. (2003). Disability and Contemporary Performance: Bodies on the Edge.

Lubet, A. (2010). Music, Disability, and Society.

Sandahl, C., & Auslander, P. (2009). Corporealities: Discourses of Disability: Bodies in Commotion: Disability and Performance.

ProQuest Dissertations & Theses Global

Davies, T. W. (2003). Performing Disability: Representations of Disability and Illness in Contemporary American Performance (Order No. 3090575).

Kopit, A. (2017). Toward a Queer Crip Aesthetic: Dance, Performance, and the Disabled Bodymind (Order No. 10644503).

Polson, H. (2013). "The dance is in your body and not in your crutches": Technique, Technology, and Agency in Disability Movement Performance (Order No. 3591334).

Quinlan, M. M. (2009). Narrating Lives and Raising Consciousness Through Dance: The Performance of (Dis)ability at Dancing Wheels (Order No. 3371581).

Strickling, C. A. (2003). Re/presenting the Self: Autobiographical Performance by People with Disability (Order No. 3116196).

Notes:

1. 1. Americans With Disabilities Act, 1990, As Amended. (1990). District of Columbia: United States. Department of Justice. Available from Disability in the Modern World database.
   2. House Ways and Means Subcommittee on Social Security Hearing. (2013). Washington: Federal Information & News Dispatch, Inc. Available from ProQuest Central.
   3. Norden, M. F. (1994). The Cinema of Isolation: A History of Physical Disability in the Movies. New Brunswick, NJ: Rutgers University Press. Retrieved from Disability in the Modern World database.
   4. Lipkin, J., & Haddad, R. (2018). "Be fierce, believe in yourself, and find your people": A Roundtable Discussion About Disability and Performance. Journal of Literary & Cultural Disability Studies, 12(2), 221-238,257-258. Available from ProQuest Central.
   5. Caldwell, R. (2017, 10). Miracle WORKER. Dance Teacher, 39, 70-72,74,76-77. Available from ProQuest Central.
   6. Wright, D., & Rogoff, T. (Directors), & Wright, D., & Rogoff, T. (Producers). (2015). Enter the Faun [Video file]. Thrifty Pictures. Available from Academic Video Online and Disabilities in the Modern World database.

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Courtney Suciu is ProQuest’s lead blog writer. Her loves include libraries, literacy and researching extraordinary stories related to the arts and humanities. She has a Master’s Degree in English literature and a background in teaching, journalism and marketing. Follow her @QuirkySuciu