READINGS
in Independent Living

Innovative Programs: An Example of How CILs Can Put Their Work in the Context of Disability Culture

1999
by Steve Brown

FROM ISOLATION TO DISABILITY RIGHTS TO DISABILITY CULTURE

People with disabilities often know no one who discusses similar life experiences. This feeling of isolation was one of the primary factors leading to the development of Centers for Independent Living (CILs). When CILs first came into being in the 1970s, individuals with disabilities talked about the discrimination faced in every aspect of life, from education to employment to transportation to communication to recreation. A focus quickly developed to work toward obtaining equal rights. While people fought for equality, they also discovered some common bonds. Commonalities in experience lead to the development of culture. An early sign of the development of a disability culture occurred in 1977 when people with disabilities took over the Federal Building in San Francisco and stayed there for about a month. This building takeover occurred because regulations to implement Section 504 of the Rehabilitation Act were not forthcoming--years after the passage of the law. Following letters, protests, and even a lawsuit, the American Coalition of Citizens with Disabilities coordinated a nationwide protest about the lack of regulations for 504. The group in San Francisco became notorious as the architects of the longest takeover of a federal building in United States history. They did this because they believed that implementation of Section 504 could lead to attaining equal rights. Many of the individuals who were there also believed that the takeover experience was one of the beginnings of disability culture.

The takeover of the Federal Building in San Francisco stimulated many activities. News of the takeover made national headlines. People from as close as San Francisco itself and as far away as the east coast learned about disability rights from news of the 504 protests. Many of them decided to move to the San Francisco Bay Area because of what they heard and saw in reports of these protests. They learned that there were people like themselves who felt discrimination and oppression because of their disabling conditions. They sought others who felt as they did about achieving equal rights.

Jeff Moyer became known as the resident musician of the 504 protests. He brought his guitar and led sing-a-longs during the month long protest. In fact, he still sings and has produced several compact discs filled with songs about disability issues. And he is not alone. Many other individuals with disabilities are producing music, literature, visual art and other kinds of cultural products that are infused with the disability experience. Moyer's evolution from a staff member of a CIL to an artist with a disability reflects a progression of the broader disability rights movement. The most prominent development of the 1990s has been the growth of disability art and culture. Disability culture is one way that people begin to realize that the experiences of disability are fertile ground for exploration in and of themselves. People have incorporated into the disability rights movement descriptions of the actual experiences of disability from artistic and cultural perspectives. Since many people with disabilities have similar experiences, this kind of inquiry often leads to a recognition of even stronger bonds than previously realized. There is an excitement in investigating these commonalities and understanding how they fit into the already existing disability rights movement. CILs can play an integral role in merging disability culture into existing and new programs and advocacy. The CIL program discussed in this paper focused on the history of one of its constituent groups to implement an innovative program.

TALKING BOOKS PROJECT

Southeast Alaska Independent Living (SAIL) in Juneau began its Talking Books Project when it realized that its consumers had many wonderful stories to share, but no one was listening. The stories were being overlooked because people outside of the CIL environment were stuck seeing only someone's disability, rather than looking beyond an impairment to a more complex-- and interesting--individual. The Talking Books Project began when SAIL started to interview consumers who were low vision or blind. Most of the individuals interviewed were older than fifty-five (55) and had lived all or most of their lives in Alaska. Some were Alaskan Native. The project began with the rich oral history of the Native group. SAIL chose to record these stories rather than writing them down because the inflection and cadence of their language was part of the fascination of their story. The oral history tradition also fit the Alaskan Native culture.

SAIL began the Talking Books Project simply with donated tapes, volunteer labor, and borrowed tape recorders. Through trial and error and a patient, helpful radio staff, bugs in the program were worked out. These stories have been played on the radio, written about in the newspaper, and discussed at dinner tables. While the stories were being recorded, everyone in the group began discussing their lives and adventures. The stories were so fascinating that the project expanded to include all SAIL programs.

As the taped stories were shared, people found them so interesting that everyone wanted a copy. SAIL consumers were no longer viewed only through their disability, but as enchanting storytellers. Soon, people all over Juneau wanted to participate in this project. The Alaska Arts and Humanities Council became such a staunch supporter of the project that it decided to expand it to include all of Southeast Alaska.

FROM DISABILITY SHAME TO DISABILITY PRIDE

The Talking Books Project is an excellent example of a common journey disabled people make. One in which the disability is focused upon both by the person with a disability and others as a source of shame. When disability is viewed in the context of the whole person, however, many of us realize that we have accomplished much during our lives. When these achievements are placed within the context of life as a disabled person, we often begin to view these deeds with pride. We then may begin to understand that we've taken a path from disability shame to disability pride. Like other aspects of living, this is not a static conclusion. Many of us experience both shame and pride at the same time. This is why projects like that of SAIL's Talking Books is important. It will assist us and others to understand that we have much more to offer than our disabling conditions. We have important and interesting stories to share. Other CILs can emulate SAIL's program and record and share the stories of the people with whom they work.

For more information on the Talking Books Project, contact:

Southeast Alaska Independent Living
P. O. Box 35097
Juneau, Alaska 99803-5097
907.789.9665 (V/TDD)

For more information on disability culture, contact:

Steven Brown
Institute on Disability Culture
Center on Disability Studies
University of Hawai'i
1776 University Ave., UA4-6
Honolulu, HI 96822
SBrown8912@aol.com
http://hometown.aol.com/sbrown8912/

About the Author

Steven E. Brown is currently a Resident Scholar at the Center on Disability Studies, University of Hawaii at Manoa. Brown, founder, Institute on Disability Culture (IDC), earned a doctorate in history from the University of Oklahoma. He directed an independent living center in Oklahoma, organized numerous community coalitions, and served as training director at the World Institute on Disability Research and Training Center on Public Policy in Independent Living. He founded the not-for-profit Institute on Disability Culture with his wife, Lillian Gonzales Brown, in 1994. Since then he has become an internationally sought speaker, trainer, and writer.

Brown's publications include dozens of articles and the books Independent Living: Theory and Practice, which has been translated into several languages; Investigating a Culture of Disability: Final Report, the result of a prestigious Switzer Fellowship from the National Institute on Disability Rehabilitation and Research of the Department of Education, the first funding of its type for research into the field of Disability Culture; A Celebration of Diversity: an Annotated Bibliography about Disability Culture, Second Edition; and Celebrating Passion, Relentlessness, and Vision: the Manifesto Editorials. An award-winning poet, Brown has published five books of poetry, Dragonflies in Paradise: An Activist's Partial Poetic Autobiography; The Goddess Approaches Fifty: Poems; Love into Forever: a Tribute to Martyrs, Heroes, Friends, and Colleagues; Pain, Plain--and Fancy Rappings: Poetry from the Disability Culture; and Voyages: Life Journeys.

In recent years, Brown has conducted writing workshops and residencies with groups of all ages, especially with middle and elementary school students. He has written a children's biography about disability rights pioneer Ed Roberts, distributed a monthly online newsletter and continued to publish articles about disability culture and disability rights in a variety of publications. He has conducted trainings throughout the United States and Europe on a variety of disability related subjects.

This document may be reproduced for noncommercial use without prior permission if the author and ILRU are cited.

The mission of the IL NET is to provide training and technical assistance on a variety of issues central to independent living today--understanding the Rehab Act, what the statewide independent living council is and how it can operate most effectively, management issues for centers for independent living, systems advocacy, computer networking, and others. Training activities are conducted conference-style, via long-distance communication, webcasts, through widely disseminated print and audio materials, and through the promotion of a strong national network of centers and individuals in the independent living field.

ILRU is a program of The Institute for Rehabilitation and Research (TIRR), a nationally recognized, free-standing medical rehabilitation facility for persons with physical and cognitive disabilities. TIRR is part of TIRR Systems, which is a not-for-profit corporation dedicated to providing a continuum of services to individuals with disabilities.

Substantial support for development of this publication was provided by the Rehabilitation Services Administration, U.S. Department of Education. The content is the responsibility of ILRU and no official endorsement of the Department of Education should be inferred.

READINGS in Independent Living