"body/freedom/art": Rethinking disability through art

By Chelsea Miller, graduate student in Public History, University of Massachusetts Amherst
Black and white photo of two dancers, barefoot, wearing black pants. Feet, limbs intertwine.

Curator Dr. Katherine Ott invited students in Dr. Samuel J. Redman's Museum/Historic Site Interpretation Seminar to explore the museum's collections and write blog posts sharing their research. Read more blog posts by the students.

What is disability? Performance artist, writer, and actor Neil Marcus encourages his audience to rethink disability as something that is not medical or physiological. Rather, Marcus suggests, "Disability is an art. It's an ingenious way to live." Based on this perspective, Marcus aims to live artfully: non-medically, non-stereotypically, and full of soul.

Daytime outdoor photo of man crouching out of wheelchair. He wears yellow pants.

I found Neil Marcus' poem, "Disabled Country," on the museum's online exhibition titled EveryBody: An Artifact History of Disability in America. I felt moved by Marcus' discussion of identity, disability, and "home," especially within the context of my own experiences with art and disability. I contacted Marcus with a number of questions about his artistic motivations and creative process.

Even though disability varies across cultures and encompasses a range of experiences, most people still think it is a medical problem to be solved. Since the 1970s, artists and activists have joined with academics to challenge the dominant medical model of disability and encourage people to understand disability as an expansive and positive experience. In his engagement with the arts and politics of disability, Marcus is part of this wide-ranging group dedicated to breaking down stigmas of disability and challenging stereotypes.

In "Disabled Country," Neil Marcus presents his audience with a story about disability, identity, and belonging. I asked Marcus how these issues relate to his motivation as an artist, and Marcus says that in the realm of art and disability, you can't be disabled without addressing its politics. Most importantly, the artist highlights that a person's disability can't be separated from their identity and daily interactions. Disability becomes place: a place to which people migrate, and a place in which Marcus found himself staying after he was diagnosed with a neurological disorder that affects muscles and movement (dystonia) as a child. The speaker, who makes a home for himself in this country called Disabled, lives Disabled culture, and lives Disabled stories. Not only are these categories self-defined, but other people also impose these categories on the speaker. As a result, we learn that disability is deeply connected with culture, communication, and how people interact with each other.

Black and white photo of two dancers, barefoot, wearing black pants. Feet, limbs intertwine.

The National Museum of American History commissioned Neil Marcus to do a reading of his poem, which resulted in a video that, in his words, Marcus "cobbled together." In his video, Marcus reads "Disabled Country" while in a swimming pool. Between lines of his poem, we also hear voice-overs from Petra Kuppers, a professor of English and women's studies at the University of Michigan. Kuppers highlights the patronizing and exploitative treatment of persons with disabilities by non-disabled people, especially in the art world. In this field, Kuppers says, "history is not a good guidance to good practice." Also in the video are clips from Marcus' play "Storm Reading" and the Salamander project by Olimpias, an artists' collective and performance research series led by Kuppers. Salamander is a community performance project begun after Marcus bought a $30 underwater Kodak camera. Marcus takes photographs and videos while the Olimpias team swims together. The team started a writing project to accompany their images.

I asked Marcus how these underwater images visualize how bodies interact with space, and how different people interact with each other. In response, Marcus explained that the underwater vantage point offers a new expression of "body/freedom/art," because the water shows the body in a new way. This process creates new ideas of "disability" and self which change the public sphere and self-image. These ideas challenge how disabled people may feel about hiding themselves. What is especially significant about this project (and those created by Olimpias) is that it is art produced by and for persons with disabilities. This pushes against the frequent invisibility of disability in art and media.

Color photo of man with brown hair and beard, with intense expression in his wide eyes. Blue shirt, gray pants. Slightly reflection in background.

For many years, Neil Marcus worked as an actor performing in his autobiographical play "Storm Reading" and even appeared on NBC's television show E.R. in 1998. In "Storm Reading," Marcus and two other actors recreate his life and his encounters with the world, or the world's encounters with him. Marcus says that he identifies as a "disabled actor" because so much of who he is, what he thinks, and how he acts is impacted by his disability. Because of the oppression surrounding people whose bodies are different, his embrace of this identity offers one avenue for representation of disability in the media and arts. By being a disabled person who is acting and being seen, Marcus pushes media outlets to make disability visible.

A final theme that Marcus incorporates in his art is contact, and, indeed, much of his recent performance art consists of contact improvisation. For example, during a public presentation, Marcus asked each member of the audience to lean on the person next to them. I asked him why he asked the audience to do this, and what this contact means to him. This activity highlighted the importance of human connections and interdependence that is central to his work as an artist and activist. Marcus emphasizes this shared humanity through intense emotional interactions in performances that offer a model for how we might better interact with each other on a day-to-day basis.

Black and white close-up photo of two people, one wearing glasses, eyes closed. Their foreheads are pressed together.

Chelsea Miller is a graduate student in the History Department at the University of Massachusetts Amherst. Source credit: e-mail correspondence between Chelsea and Neil Marcus, an oral history interview conducted by Esther Ehrlich in 2004 for the Bancroft Library, and the Olimpias project website.