Culture and Disability: Museums Have a Lot to Learn from the Field of Disability Studies , Pt. II

Some renovations of museums have been successful in bringing in disabled and non-disabled visitors in meaningful ways. The recent renovation […]

Some renovations of museums have been successful in bringing in disabled and non-disabled visitors in meaningful ways. The recent renovation at the Cooper-Hewitt National Design Museum, housed in a New York mansion that once belonged to Andrew Carnegie, has been hailed as a model of providing accessibility in landmark buildings. While designers might have complied with building codes by putting a ramp off to the side or by providing an entrance through another part of the building, at the Cooper-Hewitt they integrated the ramp into the existing entrance, and all visitors enter through the front door. The social meaning of this is powerful to those of us used to being shunted off to the back door. Further, the design allows all visitors to see the exhibits in the same order.

Another example is in Paris, at the architecturally controversial glass pyramid that I.M. Pei designed to create a new main entrance to the Louvre. It is not controversial to me. I think the pyramid integrates the different elements of the museum, as well as integrates the visitors. The wheelchair user enters the pyramid along with other visitors, and straight ahead is a platform that is an extension of the floor of the vestibule. The platform is, in fact, an open-air lift that descends in the middle of a grand spiral staircase. It can hold four or five people, wheelchair users as well as anyone who would be discomfited by stairs or escalators — someone pushing a stroller, using crutches, or just feeling tired. As I ride down the lift, I see what those walking down the stairs around me see, and we see each other. Unlike the wheelchair lifts on city buses, which tend to be used only by people with specific mobility impairments, this one creates fluid access for all. Further, while the lift is an explicit and conspicuous access feature, as rendered it is also a beautiful architectural feature.

There are numerous examples of such shifts in the physical terrain of museums, and in the communications systems that have increased access for people who are blind or deaf. While some of the changes have been made purely to satisfy legal mandates, others speak of institutional commitments to welcome a wide audience. Yet — while those endeavors are guided by ideas about disability and disabled people — little has been done in mainstream cultural institutions to examine those ideas in exhibits.

Basing museum projects on such new perspectives on disability can mean tackling difficult —often-contentious — questions. For example, just what is the significance of the new content, how does the presentation of art or artifacts influence social practices, and what is the museum’s role in shaping those ideas? Similar questions emerged at the National Museum of American History when curators contemplated an exhibition planned around Ed Roberts’s wheelchair.

They debated whether to highlight the chair as a personal artifact of a leader of the disability-rights movement, a venerated symbol that honors disabled people like Roberts; to feature it as an artifact primarily of interest to medical historians; or to use it to explain significant social history.

The museum’s staff members have come to realize that the chair is as significant a piece of social, civil-rights, and academic history as it is an exemplar of a particular type of medical technology. Roberts was heralded by many as the pre-eminent leader of the social-justice movement that has increased the integration of disabled people into American society. He had contracted polio as a young boy, was quadriplegic, and used a motorized wheelchair with a portable respirator attached to it. His career as an activist began in 1962, when he lobbied the University of California at Berkeley to admit him. Although a dean told him, “We’ve tried cripples before and it didn’t work,” the university decided to allow him in as an “experiment.” A local newspaper ran the headline “Helpless Cripple Goes to School.” Ed Roberts lived at a hospital on the campus, because dormitory floors were not strong enough to support the 800-pound iron lung that he slept in.

He completed undergraduate and master’s degrees in political science, and began work on his doctorate. He did not complete that degree, but went on to be one of the founders, and then the director, of the first independent-living centers for disabled people in the United States. Later, he became the director of the California Department of Rehabilitation, an agency that had once called him too disabled to be rehabilitated. He received a MacArthur fellowship, awarded to “geniuses,” and traveled throughout the United States and the world to work for disability rights. Ed married, had a son, and was a charismatic and often outrageous public figure.

One of Ed Roberts’s legacies, and an idea that drives the disability-rights movement, is the importance of the active voice and leadership of disabled people in matters that concern us. Debates have raged in museums and academic institutions over who can speak and teach about disability. A recent “Point of View” column in The Chronicle (“Whose Field Is It, Anyway? Disability Studies in the Academy,” by Leonard Cassuto) highlighted just how fraught the issue can be. The piece questioned whether scholars should disclose their own status as a disabled or non-disabled person. I, and others who contributed to a heated colloquy about the piece on The Chronicle’s Web site, pointed out that the author’s arguments in favor of non-disclosure glossed over the history of the economic and social exclusion of disabled people, and the paternalistic agencies and agents who have traditionally spoken for us. Some of us also pointed out that recent academic theories amply demonstrate the valid use of identity and personal perspectives in scholarship.

The issue also emerged in planning the Smithsonian conference. Our committee was in general agreement that we would have significant representation of disabled people on the roster of speakers. We also discussed whether it was possible, or desirable, to explain a complex phenomenon like disability — or, for that matter, race, gender, or sexual orientation — without consideration of the political forces that affect people’s participation in the discourse about disability and its representation — and, as many believe, that shape the discourse itself.

In addition to the Smithsonian conference, other encouraging signs exist that this obscure subject is beginning to emerge from the back wards and basements of America.

Several institutions have developed guidelines for creating accessible exhibits. Those include ways to make content accessible to people with cognitive impairments — by, for instance, providing a map that follows a narrative or sequential thread through an exhibit — and ways to provide information in more than one sensory mode for people who are deaf or blind. Guidelines at the Smithsonian go further and instruct curators on the incorporation of content as well.

The National Endowment for the Arts and state arts councils have advisory boards to assess how their grant recipients can create accessible and usable facilities and programs for all people. Last June, the N.E.A. sponsored the “National Forum on Careers in the Arts for People with Disabilities” to find ways to advance educational and career opportunities in the arts for people with disabilities. The National Arts and Disability Center at the University of California at Los Angeles works with arts organizations to create inclusive programs and train staff members, and provides resources and information to artists. The planned Disability History Museum and Learning Resource Center, an on-line service, will be the first in-depth library of material on disability history. The journal Curator published two articles in 1998 on the representation of deaf history in museums. Meanwhile, Ed Roberts’s wheelchair sits in a storage area at the Smithsonian’s National Museum of American History, as curators wait for the go-ahead to mount an exhibit they have planned. The chair was fabricated to Ed’s specifications, using sheets of aluminum and metal bars welded together. It is a motorized chair, with a tailgate for batteries that could be slid in and out when Ed traveled by plane. It uses a standard chain drive, with go-cart sprockets in the front and back, and the seat is a modified automobile seat, the sort used in Mercedes-Benz and Porsche vehicles. The most compelling feature — both for its artistry and its symbolism — is a large headlight mounted low on the chair.

Will visitors perceive this work as sculpture, historical artifact, medical equipment, circus ride, mechanical device, or a symbol of disabled people’s struggle for rights and justice? That is just the kind of question that museums and academic institutions are supposed to address.

Simi Linton is the co-director of the Disability Studies Project at Hunter College of the City University of New York, a consultant on disability and the arts, and the author of Claiming Disability: Knowledge and Identity (New York University Press, 1998).

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