Regional Oral History Office University of California The Bancroft Library Berkeley, California Disability Rights and Independent Living Movement Oral History Project Marca Bristo EXECUTIVE DIRECTOR OF CHICAGO’S ACCESS LIVING, COFOUNDER OF THE NATIONAL COUNCIL ON INDEPENDENT LIVING, PAST CHAIR OF THE NATIONAL COUNCIL ON DISABILITY Interviews conducted by Mary Lou Breslin and Sharon Bonney in 2002 and 2005 Copyright © 2010 by The Regents of the University of California ii Since 1954 the Regional Oral History Office has been interviewing leading participants in or well-placed witnesses to major events in the development of Northern California, the West, and the nation. Oral History is a method of collecting historical information through tape-recorded interviews between a narrator with firsthand knowledge of historically significant events and a well-informed interviewer, with the goal of preserving substantive additions to the historical record. The tape recording is transcribed, lightly edited for continuity and clarity, and reviewed by the interviewee. The corrected manuscript is bound with photographs and illustrative materials and placed in The Bancroft Library at the University of California, Berkeley, and in other research collections for scholarly use. Because it is primary material, oral history is not intended to present the final, verified, or complete narrative of events. It is a spoken account, offered by the interviewee in response to questioning, and as such it is reflective, partisan, deeply involved, and irreplaceable. ********************************* All uses of this manuscript are covered by a legal agreement between The Regents of the University of California and Marca Bristo dated May 10, 2005. The manuscript is thereby made available for research purposes. All literary rights in the manuscript, including the right to publish, are reserved to The Bancroft Library of the University of California, Berkeley. Excerpts up to 1000 words from this interview may be quoted for publication without seeking permission as long as the use is non-commercial and properly cited. Requests for permission to quote for publication should be addressed to The Bancroft Library, Head of Public Services, Mail Code 6000, University of California, Berkeley, 94720-6000, and should follow instructions available online at http://bancroft.berkeley.edu/ROHO/collections/cite.html It is recommended that this oral history be cited as follows: Marca Bristo, “Executive Director of Chicago’s Access Living, Cofounder of the National Council on Independent Living, Past Chair of the National Council on Disability” conducted by Mary Lou Breslin and Sharon Bonney in 2002 and 2005, Regional Oral History Office, The Bancroft Library, University of California, Berkeley, 2010. iii Marca Bristo, 2008 Photo by Lisa Winn iv ACKNOWLEDGMENTS The Bancroft Library’s Disability Rights and Independent Living Movement project was launched with field-initiated research grants in 1996 and 2000 from the National Institute on Disability and Rehabilitation Research [NIDRR], Office of Special Education and Rehabilitative Services, U.S. Department of Education. Funding from DBTAC-Pacific ADA, as part of a study of “Antecedents, Implementation, and Impact of the Americans with Disabilities Act,” supported the continuation of the disability history program and the completion of the Marca Bristo oral history. Thanks are also due to other donors to this program over the years: Dr. Henry Bruyn, June A. Cheit, Claire Louise Englander, Raymond Lifchez, Raelynne Rein, Judith Stronach, the Prytanean Society, and the Sol Waxman and Tina P. Waxman Family Foundation. Any of the views expressed in the oral history interviews or accompanying materials are not endorsed by the sponsoring agencies or individuals. v Table of Contents—Marca Bristo Series history ix Interview history xv Interview 1: June 27, 2002 Audiofile 1 1 Family and youth background in upstate New York—Father’s illness—Influence of older brother’s political involvement in civil rights and his coming out as gay, 1960s—Early community organizing to save trees—Childhood exposure to disability—Impact of mother’s illness—Hosting exchange students, cheerleading, head of color guard in high school—Transformative experiences as exchange student in Philippines—Thoughts on role of fate and purpose in life—Caught in a typhoon. Audiofile 2 21 Choosing to go to Beloit College in Wisconsin, 1971—Academics and work study—Experimenting with alcohol, drugs, and sex, and retrospective thoughts on the cultural moment of the seventies—Academic influences and lessons learned— Changing name to Marca in college—Choosing midwifery, rejecting a medical model for women’s health care, studying at Rush University College of Nursing in Chicago—Thoughts on her antiestablishment, activist path, refusing to wear a nurse’s uniform—Out-of-the-ordinary drinking habits, “my other disability”— First nursing jobs in labor and delivery—Social network in Chicago—Travels to Jamaica, Boston—Vivid memories of spinal cord injury and aftermath—Mother’s reaction, relationships. Audiofile 3 45 Early experiences of disability: phases of grief and loss, role of nurse’s training, hospital care, machinery and objectification—Impact of disability on self and others—Transfer to the Rehabilitation Institute of Chicago [RIC]—Out and about, being treated differently as a person with a disability—Importance of sexual experience during rehab—Transition from rehab, new friends, new conceptions of possibilities—Access Chicago, finding an apartment, housing discrimination— First survival experiences living independently—Learning to drive—Independent- living mindsets within the medical model—Henry Betts and the influence of the medical rehabilitation movement. Audiofile 4 66 Voc rehab denial and successful advocacy to pursue Master’s degree in nursing— Returning to former job, with accommodations, and getting a car—Rehab vi Institute’s first steps to foster access, transit, and independent living, Helen Goodkin, Jack Catlan, mid- 1970s—Injustice toward disability in the medical system hits home—Impact of 1978 trip to California conference on disability and sexuality—Discovering civil rights in a family planning book—Joining the RIC independent living committee, rejecting a transitional living proposal— Conceptualizing Access Living, tensions between the Berkeley CIL model and the Texas ILRU model. Audiofile 5 88 Genesis of Access Living, a second-generation independent living center, within a medical model as part of RIC—Marca’s hesitation to take leadership role, feeling not disabled enough—Impressions of Judy Heumann, spokesperson for the CIL Berkeley model over ILRU’s New Options model, community change over personal change—Early days of Berkeley activists in campus hospital. Interview 2: June 28, 2002 Audiofile 6 99 Hired as director of Access Living, 1979, Helen Goodkin as mentor—First steps toward creating an independent, consumer-controlled organization, a seven-year process—Staffing issues, fundraising, state support for operating expenses—Core program elements, organizational transitions—Personal issues, dealing with alcoholism and drug addiction, 1984—Connections between disability and addiction—Conflicts between independent living philosophy and Alcoholics Anonymous philosophy—Mental health crisis, 1986. Audiofile 7 120 Getting personal life in order, 1985-86—Dealing with three disabilities in parallel with disability movement activities—Henry Betts’s role in Access Living— Becoming independent from RIC, 1987—Larry Fuller’s role—Relationships with national disability leaders and their influence, a nascent network—Meeting with RSA, the funding agency for ten centers nationwide, genesis of NCIL[National Council on Independent Living]—Organizing NCIL, Jim DeJong’s contribution, preliminary meetings, incorporation 1982—Tackling the issue of consumer control in NCIL, opposing center-operated housing—Lobbying Congress to require consumer control of ILC’s, 1982, meeting with Senator Tom Harkin, learning the power of coalition politics—Fighting the defunding of Paraquad— Women’s caucus at NCIL, Marca nominated as president on a women’s slate, 1986. Audiofile 8 141 Election as NCIL president, involving women, increasing diversity—Substantive issues of early-mid eighties: personal assistance, transportation, housing, 504 vii trainings—Access Living’s role in developing ADAPT, tensions with Wade Blank—Campaigning on federal issues: Civil Rights Restoration Act, 1986, helping to end a filibuster—Fair Housing Amendments Act, disagreements over new housing accessibility and protection for recovering alcohol and drug users, the value of listening to the grassroots. Interview 3: May 10, 2005 Audiofile 9 157 More on the founding of the National Council on Independent Living, establishing a regional network—Title VII Part A and B funding issues for ILCs—NCIL’s first national advocacy strategy for funding and consumer control of ILCs—DREDF trains ILCs on Section 504 and civil rights, cross-disability network and national letter writing campaign, growth of disability identity politics—National Council on Disability: Push for NCD to become independent federal agency, publishing of Toward Independence in 1986, demonstrated need for civil rights approach—Election as NCIL president, 1986, professionalizing the organization, reaching out to minority leaders, pushing for 51 percent consumer control—Working with the civil rights community on the Fair Housing Act— Beltway v. Grassroots: