Disability culture exists, undeniably. "Googling" on the Internet yields over 500,000 possible sites relating to the idea.

One of the first sites on that list is the "Disability Culture Institute," brainchild of Steven E. Brown, historian, observer and disseminator of written material and Manifestos on the subject, and most recently, author of Movie Stars and Sensuous Scars: Essays on the Journey from Disability Shame to Disability Pride.

In his essay "Oh Don't You Envy Us Our Privileged Lives?" Brown tells of a disabled African-American woman at a meeting on disability culture: white people with disabilities were creating a "culture" in order to compensate for their lack of other identification, she told the group. "I think her resistance to the concept of a disability culture is instructive," he writes. "...[T]here seems to be an almost inevitable gut response to first hearing of the notion of disability culture -- either in favor of or opposition to the idea. But the intense, emotional response itself is a sign that the concept is a powerful one."

The evolution of the "common pride" of the disability community into a "culture" was at least in part modeled on the formation of African-American culture and the women's movement as group forces for change, he writes; the possibility of similar change for people with disabilities seemed a good enough reason for a disability "culture" to emerge. "Oppressed people's culture is always undervalued and misrepresented by the dominant culture," says David Hevey, author of The Creatures Time Forgot :Photography and Disability Imagery, whom Brown quotes.

Is it like the tree in the forest that may not have made any sound if no one was around to hear it? Do there need to be observers, or an oppressive force, for culture to exist? Would there have been a declared African American culture if there hadn't been a need to rise up in unity against an oppressive dominant group? There was certainly a distinct constellation of arts, behaviors, stories, customs, modes of dress and speech that belonged to people of African ancestry. But would that have been as focused or as obvious to the dominant culture without the pressure of the oppressor group?

Is that the reason for a disability culture? Is it necessary to pull a very disparate group of people with varied life experiences into a unified experience in order to wake up the dominant culture to the existence and rights of people with disabilities as a group?

Brown thinks so. He has built his own definition of disability culture out of his writings, musings and the Random House Dictionary definition of culture as "the sum total of ways of living built up by a group of human beings and transmitted from one generation to another."

He quotes Cheryl Marie Wade:

Disability culture. SAY WHAT? Aren't disabled people just isolated victims of nature or circumstance? Yes and no. True, we are far too often isolated. Locked away in the pits, closets, and institutions of enlightened societies everywhere. But there is a growing consciousness among us: "THAT is not acceptable." Because there is always an underground. Notes get passed among survivors. And the notes we're passing these days say, "there's power in difference. Power. Pass the word." Culture It's about passing the word. And disability culture is passing the word that there's a new definition of disability and it includes power. Culture. New definitions, new inflections.

Brown even decided to have his oft-used definition printed on his business cards: "People with disabilities have forged a group identity. We share a common history of oppression and a common bond of resilience. We generate our music, literature, and other expressions of our lives and culture, infused from our experience of disability. Most importantly, we are proud of ourselves as people with disabilities. We claim our disabilities with pride as part of our identity. We are who we are: we are people with disabilities."

"Who has the power to create and apply definitions of culture?" Brown asks. At issue is the power to define culture, as well as the power to change the attitudes and the perceptions of the dominant culture. He has made it his life's work, through his Disability Culture Institute, to watch the evolution of disability culture and report on it both as an historian and a participant.

Movie Stars and Sensuous Scars, with its attention-getting title, is a loosely collected anthology of Brown's articles and research on disability culture. Sharing his own cultural journey, he begins with his childhood. We read about his adolescence in diary form. He tells of his continuing experience living with Gaucher's disease. He looks at the difference between cure and healing.

Shared personal stories are an initial way to form culture: "Let's take our fables, our stories and make them into the kinds of myths that future generations will convey with pride when they discuss their ancestors -- early heroes of the disability rights movement," he writes in "The Scientist and the Frog." "We have a responsibility to show what we have accomplished -- and to share what remains to be done." In "American Apartheid," Brown links the cultural struggles of people with disabilities and African Americans. Other articles speak also of struggle: a walkout to protest internal disputes about independent living; telethon tyranny; the mutual struggle for rights within other minority groups.

Yet it is the book's Profiles section (Part IV) -- "the notes that get passed among the survivors" -- which holds the clearest message about disability culture. I would like to read a lot more of historian Brown digging into the stories -- not just of the movement, but deeper history, like the account of the curb ramps of Kalamazoo. Serving much the same function as the Lost Disability Classics Anne Finger has dug up for Ragged Edge, these stories of untold and unsung experiences of people with disabilities are both interesting and culture building.

Reading Movie Stars and Sensuous Scars was enjoyable, but the book felt a bit disconnected, perhaps due to the broad span of time covered and the many topics shoehorned into the single subject, culture. I am waiting for more from Brown -- focused on history, telling the stories.

Posted Jan. 19, 2004

Julie Shaw Cole is the author of Getting Life.

WHAT DO YOU THINK of what you've just read? Click to tell us.