Regional Oral History Office University of California the Bancroft Library Berkeley, California

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Regional Oral History Office University of California The Bancroft Library Berkeley, California

Disability Rights and Independent Living Movement Oral History Project

Eleanor Smith

Advocate for Accessible Housing

Interviews conducted by Laura Hershey in 2008

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.

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All uses of this manuscript are covered by a legal agreement between The Regents of the University of California and Eleanor Smith, dated October 8, 2008. 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:

Eleanor Smith, “Advocate for Accessible Housing,” conducted by Laura Hershey in 2008, Regional Oral History Office, The Bancroft Library, University of California, Berkeley, 2011.

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Eleanor Smith, 2010 photo by Barbara Rose

ACKNOWLEDGMENTS

This phase of the Bancroft Library's Disability Rights and Independent Living Movement Project was funded by DBTAC-Pacific ADA, as part of a study of “Antecedents, Implementation, and Impact of the Americans with Disabilities Act.” Additional funds came from a generous donation from Professor Raymond Lifchez in 2006 in honor of Susan O’Hara. Laura Hershey donated her services as interviewer to make the Eleanor Smith oral history possible.

Thanks are due to other donors to this project over the years: Dr. Henry Bruyn, June A. Cheit, Claire Louise Englander, Judith Stronach, the Prytanean Society, and the Sol Waxman and Tina P. Waxman Family Foundation. The Bancroft Library’s disability history program 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. Any of the views expressed in the oral history interviews or accompanying materials are not endorsed by the sponsoring agencies.

Table of Contents—Eleanor Smith

Series History ix

Interview History xv

Interview 1: October 5, 2008

Audio file 1 1

Childhood and family background in Roanoke, Illinois—Early onset of disability, age 3, 1946—First pains of polio—Initial paralysis, hospitalization and family’s visitation—Memories and anecdotes during first time in hospital—Gradual regaining of movement, physical therapy—Dream about being chased by a wolf which may have represented getting polio—Passing time in the hospital— Payment for hospital treatment—Getting around with wheelchair and scooting— House accessibility—Moving to Eureka, Illinois, having a ramp put on the house—Access accommodations in school, being carried up and down steps, using a wheelchair—Benefits and privilege of father as school principal—Best friend, Carolyn Dick—Other childhood friends—Social life and school involvements as an adolescent—Adventures in the summer—Awareness of others with disabilities in Eureka, Illinois and pressure to connect with other disabled peers—Trying to walk—Hospitalization and surgery to correct knock-knees at Warm Springs, Georgia—First interactions with African-American people and hospital segregation—Relationship with parents, talking about troubles and disability—Harassment about her disability in school—Sister standing up against her harassment—Relationship with the Mennonite religion—Fundamentalist uncle’s prejudice—Acceptance in local community—Burden on her parents— Physical aid from siblings—Mother’s message about future aspirations, academics and marriage—Move to Heston, Kansas because of father’s job offer—Attendance at a Mennonite high school, Heston Academy and impact of father’s role as principal—Increase of religious practice—Puberty and disability related—Dating and socializing in high school—College at Heston—Emporia State Teachers’ College—Meeting and falling in love with Lynn—Exploring sexuality and identifying as a lesbian—Discussion of disability with Lynn— Meeting friend, Carol, and her experience with spina bifida—Accessibility at the college and overcoming disability challenges—Religion debates and straying from the Mennonite religion—Struggles with relationship with Lynn— Metaphorizing disability as like the weather—Awareness of other minority rights movements—NAACP involvement—Return to Goshen College, studying English with a Spanish minor and education degree—Falling out with Lynn—

Graduate School at University of Illinois, master’s degree in American literature and literary criticism, 1966—Difficulties in enrollment at University of Illinois, dealing with the disability office—Disability culture with disabled roommate—UI disability center and comedy show review—Post-graduate school plans—Heston school system teaching offer—Living at home as an agnostic lesbian—Teaching vi

high school English and Spanish, running the book club—Attempt to go to the Peace Corps, rejection due to disability—Struggle with father in respect to debt, traveling abroad and double standards—Compromise to pay off debt before traveling—Reflection on sexual identification and terminology.

Audio file 2 31

Volunteering, teaching English, near San Juan, Puerto Rico under the Mennonite Voluntary Services, 1968-1970—Negotiating teaching religion as an agnostic— Positive experience with family out in the countryside of Puerto Rico—Sense of independence—Political climate in Puerto Rico—Unfulfilled plans with Lynn at University of Kentucky—Onset of depression at University of Kentucky.

Audio file 3 36

Visitation with school psychiatrist and anti-depressants—Little awareness of disability movements or communities in Kentucky—Leaving Kentucky early to teach at Taylor University—Formation of political consciousness—Authorship of paper on correlation between jobs and a college education—Employment of alternative teaching methods—Move to Koinonia Farm, studying community— Disability consciousness and disability prejudice at the farm—Being a lesbian at the farm—Participation in group camping trip at the farm—Disability discrimination and subsequent leave from Koinonia—Koinonia’s activism and social justice—Move to Suruban intentional community and the Transactional Analysis Gestalt School, 1974—Motivation for attending the TA Gestalt School—Disability insensitivity at the TA Gestalt School.

Audio file 4 52

Comparing disability prejudice to racism—Lesbian group participation in Durham, North Carolina—Moving to Atlanta and the Atlanta Lesbian Feminist Alliance involvement.

Interview 2: October 6, 2008

Audio file 5 55

Apartment in Atlanta with entrance access—Challenges with entering apartment bathroom—Job hopping, landing a caseworker job with Vocational Rehabilitation—Activity with the Atlanta Lesbian Feminist Alliance—Struggles socializing with a disability at parties, the untold story of misery.

Audio file 6 58

Emory Rehab Center and architect speaker, concept that disablement is created by the inaccessible environment—Moment of realization that things could be different for disabled people—Equal Rights Amendment involvement—Attempt vii

to create a disability support group, and peers' negative reaction—Discussions around disability with disabled co-workers—Participation in a feminist consciousness raising group, bringing up personal issues about disability— Disability issues intersection with relationships and intimacy—Impetus of Section 504, Califano and first disability rights activism awareness—Looking for activism opportunities, Jim Cherry and Mark Johnson—Fall through of communal house of lesbians in Durham—Radical Psychiatry training and decision to move to San Francisco—Road trip from Atlanta to San Francisco—Living with two Mennonite lesbians in San Francisco, apartment inaccessibility—Training to become a Radical Psychiatry therapist—Participation in a disabled lesbian group and exploration of the emotions about disability—Searching for disability theories within Radical Psychiatry, encountering ableism—Challenges working as a secretary at a women’s agency—Move to Oakland in a house with lesbians and a male wheelchair-user—Failure to meet disability requirement for job at Center for Independent Living—Social life and dating in the Bay Area—Moving back to Atlanta, working at the feminist counseling collective, Karuna Counseling for Women and their Friends—Teaching English as a Second Language—Onset of post-polio syndrome—Relationship with Barbara Rose—Post-polio syndrome as a new disability and deciding to go on long-term disability—Initial organizing with Mark Johnson—MARTA station “Access Now” rally on accessible buses— Beginning stages of activist group, Let’s Get Together—San Francisco ADAPT action—Reflection on civil disobedience and street activism—Understanding raising disability consciousness—Joining efforts with ADAPT in and outside Atlanta—Arrest for Greyhound action—Habitat for Humanity house building project featuring inaccessible houses—“Basic home access” and Concrete Change epiphany—Lesbian Feminist Concrete Change—Creation of Entryways, a technical manual, and the zero-step entrance philosophy—Roadblocks with Atlanta chapter Habitat for Humanity’s director—First success with a wider door entrance—The parallels between Let’s Get Together and Lesbian Feminist Concrete Change—Fighting for Department of Housing and Urban Development’s (HUD) Option One—National ADAPT action at HUD— Introduction to the word “visitability.”

Interview 3: October 7, 2008

Audio file 7 88

Demands of basic features for “basic access”—Taking city ordinances statewide—Building Better Neighborhoods and connecting with Representative Jim Martin—Bathroom door bill—Repeated defeats, fighting against the Home Builders Association lobby—Power in raising consciousness—Disconnect between progressive ideology and disability rights—Allies in the visitability campaign—Hope VI application and projects—The making of Building Better Neighborhoods—Universal design movement—Overlap of academic and professional movement and grassroots movement—Collaboration with the IDeA Center at SUNY, Buffalo—Advocacy for visitability ordinances emerge across the country—Pima County, Arizona ordinance for every new house with basic viii

access—Kansas state law for basic access features—Urbana, Illinois’s visitability law—Bolingbrook, Illinois’s ordinance as a monument to the movement— Visitability advocacy in Canada—Principles behind basic access and visitability and challenges of principles—Prioritizing features—Inclusive Home Design Act and aging in place—ADAPT’s agenda for accessible housing and HUD—Myths and opposition to Concrete Change—Housing as a public/private entity— Contention with the Home Builders Association’s lobbyists—Lack of speed in understanding visitability—Co-authorship of article with brother, Stan, on aging, disability and the housing industry—AARP commissioned paper on visitability.

Audio file 8 112

Habitat for Humanity’s role in promoting visitability—Tour of visitable homes— Media rhetoric on life-sustaining treatment to newborns with disabilities— Visceral and political reactions to devaluing people with disabilities—Efforts to intervene in the Larry McAfee case to block his suit to have assistance in ending his own life—Collaboration with the Georgia Advocacy Office to submit amicus brief—Larry McAfee court case—Interview on Nightline as a disability rights voice against assisted suicide—Importance of adding “chronically ill” in addition to “disabled”—Life Worthy of Life group—Push for universal healthcare—Diane Coleman's Tennessee schoolhouse for disability rights gatherings—Impetus of the Not Dead Yet movement—Action at Carol Carr’s murder trial—Actions at the Terri Schiavo court case amidst the Christian and Catholic contingencies— Importance of the Not Dead Yet movement—Living with Barbara Rose and involvement with a co-housing community—Formation of an intentional community with visitability—Bill for visitability on all houses built on a concrete slab.

Interview 4: October 8, 2008

Audio File 9 135

Access to the lesbian and feminist community—Michigan Womyn’s Music Festival’s accessibility—DART—Planning then canceling civil disobedience at the Michigan Womyn’s Music Festival—Organizing the National Lesbian Conference in Atlanta—Leading disability workshops at a feminist bookstore— Presentation at the US Social Forum—Aged by Culture reading group.

SERIES HISTORY by Ann Lage Disability Rights and Independent Living Movement Oral History Project

Historical Framework

The latter half of the twentieth century witnessed a revolutionary shift in the worldview and legal status of people with disabilities. In major cities across the United States, people with disabilities began in the 1960s and 1970s to assert their rights to autonomy and self-determination and to reject the prejudices and practices that kept them stigmatized, isolated, and often confined to institutions or inaccessible homes under the care of family members.

Within a few years of each other, groups of people—usually young, often with a university connection, and frequently wheelchair users with significant physical disabilities—formed organizations in Berkeley, New York, Boston, Denver, St. Louis, Houston and elsewhere to foster independent living in the community and to advocate for laws and policies to remove barriers to autonomy. Characterizing these groups, which formed relatively independently of each other, was the evolution of a new core set of beliefs that gave a distinctive character to this emerging disability rights and independent living movement. Their members came to insist on self-determination and control over their organizations. They resolved to make changes in their own lives and in society. And as they engaged in political actions, they began to recognize the shared experience of discrimination and oppression among groups with diverse disabilities.

Very quickly, informal regional and national networks of activists developed, often including people with a range of disabilities, who shared information about the nuts and bolts of funding, peer counseling, and service delivery. They joined together to advocate for essential personal assistance services and for the removal of architectural and transportation barriers. These networks were formalized in national organizations, such as the American Coalition of Citizens with Disabilities (founded in 1975), and national gatherings, such as the 1977 White House Conference on Handicapped Individuals, which served in turn as catalysts for national and grassroots organizing on a cross-disability basis.

From the beginning, the movement was a part of the activist and countercultural climate of the times, evolving within the context of civil rights demonstrations, antiwar protests, and the emerging women’s and gay rights movements. Early leaders such as Judith Heumann, Fred Fay, Ed Roberts, Lex Frieden, and a host of others conceptualized their issues as a political movement, a struggle for the civil rights of people with disabilities. A wide-ranging group of activists absorbed this civil rights consciousness and cross-disability awareness during a series of defining political actions, such as the nationwide sit-ins and demonstrations in 1977, organized to demand the issuance of regulations for section 504 of the Rehabilitation Act, and during the subsequent peer trainings on the rights of people with disabilities, which were carried out nationwide.

As the political movement grew, the new cadre of activists made connections with the emerging parents’ movement and its efforts to free people with developmental disabilities from the massive and dehumanizing state institutions of the time. A series of landmark federal lawsuits, most notably PARC v. Pennsylvania (1972) and Mills v. Board of Education (1972), established x

for the first time a right to a public school education for children with disabilities. Alliances and coalitions also developed with a number of traditional, disability-specific organizations, which were themselves undergoing changes during this period.

New organizations devoted to pursuing legal and legislative reforms, such as the Disability Rights Education and Defense Fund (1979), ADAPT, a grassroots direct-action organization (1983), and a growing number of other local, state, and national disability organizations and alliances profoundly influenced national policy in education, transportation, employment, and social services. Their best known legislative victory was the passage of the Americans with Disabilities Act in 1990, which, although compromised by subsequent court decisions, offered broad civil rights protection for disabled Americans and has served as a beacon for the creation of disability rights legislation in fifty other countries.

Less concrete than the legislative accomplishments and legal cases, and still evolving, is the shift in attitudes and consciousness that was driven by, and has transformed the lives of, people with a wide variety of physical and mental disabilities, challenging the notion of disability as stigma and instead embracing disability as a normal facet of human diversity. Theoreticians and artists with disabilities play a prominent role in defining and communicating concepts of disability community and disability culture, and academicians are promoting disability as a category of cultural and historical analysis.

These achievements, as significant as they are, have not ended the discrimination or the prejudice. Indeed, the first years of the twenty-first century have seen several Supreme Court decisions which have limited the expected scope and effectiveness of disability rights law, and many disabled Americans remain economically and socially marginalized. While the need for change continues, the tremendous accomplishments of the disability rights and independent living movement cannot be denied. American society has been profoundly transformed, and any accurate account of the social and political landscape of the late twentieth century will acknowledge the contributions of disability rights and independent living activists.

Project Design, Interviewees

The Disability Rights and Independent Living Movement Project at the Regional Oral History Office, the Bancroft Library, UC Berkeley, preserves, through oral history interviews, the firsthand accounts of the activists who have made significant contributions to the origins and achievements of this movement. The Bancroft Library also collects, preserves, and provides access to the papers of organizations and individuals who have been a part of the struggles for disability rights and independent living. All of the oral history texts, finding aids to the archival records, and selections from the archival papers and images are available on the Internet, as part of the Online Archive of California, California Digital Library.

The first phase of the project, completed in 2000, documented the movement during its formative years in Berkeley, California. Berkeley was the site where the concept of independent living was most clearly articulated and institutional models developed, originally by and for students on the Berkeley campus and soon after in the community, with the founding of the nation’s first independent living center in 1972. These organizations and their dynamic leaders, together with the activist tradition in the Bay Area and a disability-friendly climate, made Berkeley an xi

important center of the disability movement and a natural focus for Phase I of the project.

During Phase I, Regional Oral History Office interviewers recorded forty-six oral histories with Berkeley leaders, many of whom have also been figures on the national scene. The Bancroft Library collected personal papers of interviewees and others in the disability community and archival records of key disability organizations, such as the Center for Independent Living, the World Institute on Disability, the Disability Rights Education and Defense Fund, and the Center for Accessible Technology.

Phase II of the Disability Rights and Independent Living Movement Project (2000-2004) expanded the oral history research and the collection of archival material to document the growth of the movement nationwide. The project again focused on those leaders whose activism began in the 1960s and 1970s. The forty-seven Phase II interviewees include founders and organizers of disability rights groups and early independent living centers in New York, Boston, Chicago, Texas, and California. Of these, many have also been national leaders in the movement and founders of national organizations who helped to conceptualize disability rights as a political movement and shaped the programs and philosophy of independent living. Others have been key figures in the development of disability rights law and policy, as organizers, strategists, and lobbyists behind the scenes. The project’s ongoing Phase III has continued interviews with the founding generation, but incorporated leaders whose involvement began in the 1980s and 1990s.

A number of interviewees have held positions in state and federal government agencies and commissions, helping formulate government law and policy on transportation access, social security and health benefits, and personal assistance, education, and rehabilitation services. Several have worked to free disabled people from institutions, and others reflect on their own experiences living in institutions. Some interviewees were deeply involved with the parents’ movement.

The international disability movement is represented by Yoshihiko Kawauchi, a leading proponent of universal design and disability rights in Japan; many American activists interviewed for the project also have connections to the international movement. Two interviewees are pioneering artists with disabilities, who discuss their careers as artists and the relationship of art and advocacy. Several have taught disability studies at colleges and universities, contributing to the concept of disability as a category of analysis analogous in many ways to class, race, gender, and sexual orientation.

Interview Themes and Topics

An overarching research goal for phases I and II of the Disability Rights and Independent Living Movement Project was to explore and document how a broad group of people with disabilities, in key cities across the country, initiated and built this social movement, and how it evolved nationally, within the context of the social and political fabric of the times. Lines of inquiry include social/economic/political backgrounds of interviewees and family attitudes toward disability; experiences with medical and rehabilitation professionals and with educational systems; identity issues and personal life experiences; involvement in civil rights or other social movements of the era; and developing consciousness of disability as a civil rights issue. xii

Interviews record how people with disabilities built effective organizations, with information about leadership, organizational structure and style, organizational turning points, stumbling blocks, achievements, and failures. Challenges particular to the disability community are addressed; for example, leaders of independent living centers point out the difficulties of providing much-needed services to clients and answering to government funding agencies for their service mandate, while still maintaining the essential advocacy roots of the independent living movement.

Interviews explore the building of national alliances and coalitions, investigating networking among groups from different locales and among groups accustomed to aligning on the basis of a single disability. Indeed, the issue of inclusiveness within the movement—the nature and meaning, and sometimes tenuousness, of cross-disability alliances and the inclusion of newly recognized disabilities—is a complex and significant theme in many project interviews, and offers an area for future oral history research.

Interviews document the range of efforts—from protest demonstrations, to legislative lobbying, to litigation in state and federal courts—to influence disability law and policy, to embed disability rights into the canon of civil rights, and to alter and expand the very definition of disability. Several interviews also reflect on a recent philosophical shift of some movement thinkers, who draw on a human rights framework and acknowledge the disability community’s need for social supports along with equality of opportunity and civil rights.

Also examined by many narrators are race, gender, and sexual identity issues: the role of women (large) and minorities (limited) in the movement; the development of programs for women and girls with disabilities; questions of sexuality and disability; and the disability movement’s relationship over the years with the women’s, gay and lesbian, and African American civil rights movements. The involvement of able-bodied advocates, including parents of children with disabilities, is examined by many interviewees, both disabled and able-bodied, with telling accounts of often awkward and sometimes painful struggle over their place in the movement. (For instance, one organization toyed with the idea of granting able- bodied members only three- fifths of a vote.)

Another important theme running through these interviews is the question of equal access. This includes the impact of technological advances—from motorized wheelchairs in the early days of the movement to adaptive computer technologies more recently, all of which have profoundly extended opportunities for people with disabilities. And it includes the campaigns, legislation, and lobbying—on campuses, in communities, and in Congress—for removal of architectural barriers to people with disabilities, for access to public transportation, and for access to personal assistance services, all essential requirements for independent living.

Many interviewees reflect on the process of developing a disability identity and a sense of belonging to a disability community. Several explore the concept of disability culture and its expression in the arts and in media, and theoretical explorations of disability by scholars and educators. Interviewees who have pioneered the fields of disability scholarship, arts, and ethics point out the contributions of disability studies to the broader society in fostering new and more complex ways of thinking about the body, about normality, about crucial ethical issues relating to abortion, euthanasia, and physician-assisted suicide; and in contributing a unique disability xiii

perspective to scholarship in history, literature, and cultural studies.

Project Staff and Advisors

Since its inception the project has been collaborative, with staff members and advisors drawn from the disability community, from academia, and from the Bancroft Library and its Regional Oral History Office. The national advisory board for Phase II includes disability rights leaders Fred Fay, from Boston, and Lex Frieden, from Houston; scholars Frederick Collignon and Sue Schweik from UC Berkeley, Paul Longmore, historian from San Francisco State University, and Karen Hirsch, disability scholar from St. Louis.

Ann Lage directed the project for the Regional Oral History Office, providing years of experience in oral history and leadership for the interviewing team. Interviewers for the project had a unique set of qualifications, combining historical perspective, training and experience in oral history methods, personal experience with disability, and, frequently, activism and participation in disability organizations. Oral history interviews were conducted by Sharon Bonney, former director of the Disabled Students’ Program at UC Berkeley and former assistant director of the World Institute on Disability; Mary Lou Breslin, cofounder and former president of the Disability Rights Education and Defense Fund, policy consultant and lecturer on disability civil rights topics, and Henry Betts Award winner; Kathy Cowan, librarian for a public interest law firm; Esther Ehrlich, oral history interviewer and editor in the areas of disability arts and community history; Denise Sherer Jacobson, writer and educator on disability issues; and David Landes, former coordinator of student affairs for the Computer Technologies Program. Susan O’Hara, former director of the Disabled Students’ Program at UC Berkeley and the initiator of the original idea for this project, served as consulting historian, occasional interviewer, and convenor of monthly project meetings.

Fred Pelka joined the interview team in 2000 and conducted major interviews, primarily in the East. Pelka is a writer specializing in disability rights politics and history, author of The ABC- CLIO Companion to the Disability Rights Movement, and a recipient of a 2004 Guggenheim Fellowship for his proposed book, “An Oral History of the Disability Rights Movement.” Harilyn Rousso, educator and consultant on issues of women and girls with disabilities, and Laura Hershey, writer and disability activist, also contributed interviews to the project, as did Jonathan Young and Susan T. Brown.

Oral History and the Oral History Process

Oral history provides unique and irreplaceable sources for historical study. It preserves the reflections and perspectives of those who have participated in historical events, documenting with firsthand accounts how events happened, how decisions were made, and the behind-the- scenes interplay that underlies the public face of an organization or social movement. Beyond documenting what happened and how, the words of participants reveal the personal and social contexts and the institutional and political constraints which profoundly shape events but may not be apparent in the written record. Most significantly for this project, oral histories offer an opportunity to elicit reflections on often elusive matters of identity, changes in perception and consciousness, and the personal experience of living with a disability. Finally, they provide a record of how people remember and understand their past, often an indication of personal values xiv

and cultural meanings.

The DRILM project team all contributed to the design of the project and assisted in developing interview protocols. Once narrators were selected and arrangements made, they prepared a preliminary outline before each interview session, based on interview protocols, background research in relevant papers, consultation with the interviewee's colleagues, and mutual planning with the interviewee. The length of each oral history varied according to the length and complexity of the narrator’s involvement in the movement, but also was dictated by scheduling and availability limitations.

Tapes were transcribed verbatim and lightly edited for accuracy of transcription and clarity. During their review of the transcripts, interviewees were asked to clarify unclear passages and to give additional information when needed, but to preserve the transcript as much as possible as a faithful record of the interview session. Interviewees were offered the opportunity to seal sensitive portions of their transcripts, or omit them from the Internet versions. Many of the oral histories are supplemented by a videotaped interview session. Video and audiotapes are available at the Bancroft Library. The project Web site (http://bancroft.berkeley.edu/collections/drilm/) links to the full-text of most of the completed oral histories, with video and audio clips, and to related projects on Artists with Disabilities and the self-advocacy movement.

The Regional Oral History Office was established in 1954 to augment through tape-recorded memoirs the Library's materials on the history of California and the West. The office is under the direction of Richard Cándida Smith and the administrative direction of Charles B. Faulhaber, James D. Hart Director of The Bancroft Library, University of California, Berkeley. Regional Oral History Office interviews can be accessed at http://bancroft.berkeley.edu/ROHO/. Print volumes can be read in the Bancroft Library and at the University of California, Los Angeles, Department of Special Collections.

The Bancroft Library's Disability Rights and Independent Living Movement Project was funded by 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. Additional interviews, focusing on antecedents, implementation, and impact of the Americans with Disabilities Act, were completed for the project under a 2006 contract funded by DBTAC-Pacific ADA. Any of the views expressed in the oral history interviews or accompanying materials are not endorsed by the sponsoring agencies.

Thanks are due to other donors to this effort over the years: Dr. Henry Bruyn, June A. Cheit, Claire Louise Englander, Raymond Lifchez, Judith Stronach, the Prytanean Society, and the Sol Waxman and Tina P. Waxman Family Foundation. Special thanks go to Professor Raymond Lifchez for his generous donation in 2006 in honor of Susan O’Hara.

Ann Lage, Project Director Regional Oral History Office

Interview History: Eleanor Smith

Eleanor Smith is a soft-spoken but forceful advocate for disability access and inclusion, particularly in private homes, subsidized housing, intentional communities, and progressive, lesbian and feminist spaces. Smith currently lives in Decatur, Georgia, in a co-housing community that she helped to found. All residences in the community are designed with the basic access features of one no-step entrance, a ground-floor bathroom, and 36-inch-wide interior doorways -- standards which Smith refers to as "visitability" because they allow wheelchair users to visit.

Growing up with polio in the middle part of the twentieth century, Eleanor Smith encountered accessibility barriers in both public and private buildings from a very young age, and later recalled these painful experiences when she became an advocate for access and visitability. She had careers as a teacher and as a therapist before exacerbating post-polio syndrome prompted her to retire on disability benefits. Since that time, she has devoted her time and energy to advancing awareness and policy change, with the goal of reducing the barriers that limit the movement of people who use wheelchairs and other mobility devices. She has also worked actively against medical discrimination targeting people with disabilities and chronic illnesses, and was a visible presence in the Larry McAfee and Terri Schiavo cases.

The interviewer, Laura Hershey, has known Smith since the early 1990s, through involvement in disability rights campaigns and interest in lesbian and feminist issues. In the fall of 2008, Smith visited Hershey at her home in Englewood, Colorado, for several days. During that time, Smith was able to meet with some other housing access advocates in the Denver area, and to see some scenic areas of Colorado. In addition, Hershey and Smith spent over seven hours recording the oral history interview transcribed here. They jointly donated the interview to the Regional Oral History Office for the Bancroft Library’s archive collection on the Disability Rights and Independent Living Movement. The interview was transcribed and audit/edited by Arianna Vaewsorn and Alyssa Kronick, both students in the Undergraduate Research Apprentice Program.

Interview transcripts are available for research in the Bancroft Library and in the UCLA Department of Special Collections. Audiofiles of the interview sessions are available for listening in the Bancroft Library. Transcripts of this oral history and others in the Disability Rights and Independent Living Movement series are on line at http://bancroft.berkeley.edu/collections/drilm/.

The Regional Oral History Office was established in 1954 to augment through tape-recorded memoirs the Bancroft Library’s materials on the history of California and the West. The collection of the Regional Oral History Office can be accessed at http://bancroft.berkeley.edu/ROHO.

Laura Hershey Interviewer July 2010 xvi 1

Interview 1: October 5, 2008 Begin Audiofile 1 Eleanor Smith

1-00:00:28 Hershey: This is Laura Hershey, and I am today interviewing Eleanor Smith for the oral history project, the disability rights and independent living movement project . Today is Sunday October 5, and we are conducting this interview in my home in Englewood, Colorado, where Eleanor is visiting for a few days. Eleanor, thank you for doing this.

Smith: My pleasure.

1-00:01:16 Hershey: So Eleanor if you don’t mind, I’m just going to start at the very beginning, and ask you when and where you were born.

Smith: I was born in 1943 in central Illinois, in a small town of about 900 people, situated among cornfields.

1-00:01:39 Hershey: What was the name of the town?

Smith: Roanoke.

1-00:01:40 Hershey: And what were your parents’ names and occupations at the time?

Smith: My dad was named Tilman Smith, and he was principal of the high school. My mom was working at home, being a mom.

1-00:02:00 Hershey: And her name?

Smith: Louella.

1-00:02:04 Hershey: Louella?

Smith: Mm hm.

1-00:02:05 Hershey: And did you have siblings? I know you have siblings, where do you fall in there?

Smith: I was fourth; it was girl, girl, boy, and then I was a girl. And then there was a young baby boy that came along.

1-00:02:23 Hershey: Okay, so you want to say your siblings’ names?

Smith: Carolyn, Marian, John, and Stan.

1-00:02:31 Hershey: Okay. So your disability started pretty young, right? You had polio at age three, is that right?

Smith: That’s right, I was three. Uh huh.

1-00:02:43 Hershey: And do you have any memories of that, like the onset of your disability or how that affected you, or your family?

Smith: I have a lot of memories, I remember quite a few things from before, because I guess it’s so dramatic for me to remember whether I could walk or not. And then I remember some of the process of getting it. I had some new shoes, at that time they thought kids should wear ankle shoes ‘til they were five or six, to protect their ankles. So I had these new brown shoes, and I remember saying they were pinching me; and I guess mom or somebody having me on the couch, and feeling my shoes and saying, “I don’t understand why they would pinch, because they’re big.” I think that was actually the first twinge of polio.

1-00:0340 Hershey: So how did it affect you at first, were you ill? Were you in a hospital for a while?

Smith: Yes. At first I was completely paralyzed. I couldn’t move my fingers or my toes, or my arms or legs. And I lost the ability to swallow for a little while, apparently. I didn’t know that ‘til my parents told me many years later, when I was asking them some stuff post-polio disability. So, I was in the hospital a full year. Back then, that’s the way they did that. It was about, I’d say, thirty miles from home. And, of course my parents had all these other kids, and then they had a baby. They came five nights a week for a year. The neighbors babysat the kids, and then the sixth night one of my extended aunts’ and uncles’ families would come [to visit me]. So they were very faithful in coming, but I didn’t see my sibs for a whole year; kids couldn’t come and visit. So, that was—

1-00:04:56 Hershey: And were you in the hospital with a lot of other people who had polio?

Smith: The first couple of weeks I was. I don’t know how long I was in intensive polio isolation. I know there were lots of little kids in there. I would hear them crying, and they would—when our parents would come to visit, they wouldn’t let them in the room either. So there was this door with this round glass window, maybe twelve inches across. Come visiting hours, they would push our cribs —apparently it was for small children—in a place where we could see that window, and you’d see the head of somebody’s mom, the head of

somebody’s dad, the head of your mom, the head of your dad; appearing sequentially.

1-00:05:46 Hershey: Was that because they were afraid of contagion?

Smith: Yeah. I don’t know how long I was in there, several weeks I think. I’m sure I was freaked out, I’m sure too—no one can tell me that erased memories don’t exist. I know they do, because I remember so many details of getting polio, and details of being in that room. But I don’t remember the spinal tap, which I know in those days was very painful, probably still is. I don’t remember the moment that I realized my parents were taking off, or were gone. I don’t remember any of that, and I think that must have been fairly intense. But you know, in the ward, I got this cut on my eyebrow; it still is a scar. In the ward, because I heard—I couldn’t move a muscle, right? I still wanted to play, this kid next door to me in the little crib. I heard jingle jingle jingle, I said, “What is that?” He said, “It’s my toy.” I said, “Can I play with it?” He said, “Well, you’re over there, I can’t give it to you.” I said, “Well you could throw it.” [laughter] So, up in the air it went, and down right on my eyebrow, causing blood to run into my eye. I was rushed to get to the little other operating room, to get a few stitches in my head.

1-00:07:19 Hershey: Was that while you were still in intensive care?

Smith: Right, I couldn’t move even a finger.

1-00:07:25 Hershey: So then at what point were you transferred to a different—?

Smith: Some weeks later. ‘Cause from then on I had roommates, just one roommate or two roommates for the rest of the year.

1-00:07:35 Hershey: Had you regained some movement?

Smith: Gradually I regained movement. I remember that my hands didn’t come back quickly at all. There would be a physical therapist in there, and they’d say, “Can you touch your thumb to your little finger?” And they’d say, “Make a cookie.” “Can you make a cookie for your uncle so and so, and your aunt so and so?” all down the fingers. It would be super hard. I’d have to like, think really hard. And then my hands came back, my arms came back, I guess gradually.

1-00:08:09 Hershey: And when they came back, was that when you were transferred? Or that happened while you were in the other place?

Smith: No, I was transferred before they came back.

1-00:08:19 Hershey: And what kind of a place was it you were transferred to? Was it a rehab?

Smith: No, it was just another different set of rooms in the same hospital.

1-00:08:27 Hershey: Okay, so then more long term?

Smith: Yeah, long term. A series of roommates, they would often be in their teens or twenties. I wasn’t with any more little kids for quite a while.

1-00:08:40 Hershey: Why were they in it? Were they disabled?

Smith: Well, I think they might have had polio. I’m not sure why they were in there. I don’t remember them very well. I remember some of the nurses. I think the roommates kind of circulated in and out pretty fast, they weren’t like post- surgery or anything. I don’t remember people throwing up or moaning or anything like that. Must have been—I don’t know what they were there for.

1-00:09:13 Hershey: Okay. Do you have any other strong memories of that year in the hospital?

Smith: Well, I remember a dream I had that might’ve been about getting polio. I remember this dream, I might’ve been four by that time, and I remember dreaming that I was in a little barn and—and actually, my uncle did have barns like that. It was a corn crib that had an entrance and an exit, really wide, and a wolf was going to come and get me. It was dark in there, and a wolf was going to come, and I’m scared to death a wolf is going to come. Oh my goodness! And I’m terrified. And then a stretcher running of its own accord, you know a gurney, rolls in one door, and I jump on, and then it winds out the other door, and I’m on it. And the wolf is right behind it yapping, yapping at me; and then I pull further ahead gradually down this story-book lane, and the wolf is in the distance. Later, I interpreted that to just really be about, you know, maybe almost dying, and gradually pulling away from it.

1-00:10:24 Hershey: So that was when you were in the hospital, you had that dream?

Smith: Yeah, I had that dream.

1-00:10:27 Hershey: Did you tell anybody about it then?

Smith: I don’t think so,

1-00:10:33 Hershey: So then, while you were in the hospital for that year, was most of what you did just a lot of physical therapy and rehab?

Smith: They had me in physical therapy, yeah, and in the pool once in a while. And then mostly I just laid in my bed, hung out.

1-00:10:53 Hershey: How did you spend time? Did you read?

Smith: Well, I was too little to read. People read to me and I learned to read, lying there. People read so much to me, that I learned to read, while they were doing it. And, I had the visitors every night, and I don’t remember being bored. I’ve always been so glad there was no TV. I think I might’ve come out of there fairly insane if there had been a TV playing all day long. My roommates would play the radio, I remember that. They’d play the radio some. My back was real weak, and I was getting a curvature of the spine. They had me lying down almost all the time, I wasn’t supposed to sit up. Finally, they figured out that they would fit me with a little back brace. And that’s when they sent me home. I have no idea why they kept me so long, why they decided to send me home. March of Dimes was picking up those payments, though. There was no way my parents could have paid, or anybody could have paid, for a year of hospitalization.

1-00:12:39 Hershey: So, when you were there, did you get a wheelchair at that point? Or did you come home in a wheelchair?

Smith: I think I did, because they took me to Sunday school and so on right away. So they must’ve had a little wheelchair for me. I mean, at home what I did was scoot around on the floor. Like a little crab; [laughter] I developed really strong arm muscles. I liked to be down on the floor, because I was really mobile. But at some point, also, they were fitting me with leg braces, and I know I was in the wheelchair when they would take me to church and stuff.

1-00:13:26 Hershey: So, was your house accessible at that point?

Smith: No, no. They carried me in and out.

1-00:13:34 Hershey: Yeah.

Smith: But I was small. And then we moved to another town when I was six, and then they had a ramp put on that.

1-00:13:41 Hershey: Did they? And what town was that?

Smith: That was a little nearby town, almost the same size, called Eureka, Illinois, where Ronald Reagan got his undergraduate degree, in this little podunk college called Eureka College. [laughter]

1-00:13:58 Hershey: And so, when did you start school? It was there?

Smith: I started first grade there in that first little town, and then I moved to that other town in the middle of the year.

1-00:14:08 Hershey: And when you went to school, how did you get around? Was it a wheelchair?

Smith: Yeah, it was a wheelchair, and it was inaccessible [in the first school]. They had eighth graders carrying me up and down the steps.

1-00:14:16 Hershey: Is that right?

Smith: Uh huh. And the only reason that could be arranged, as I look back and saw how many of my friends—peers did not go to school; I realized, my dad was principal of the high school. He could say, “Eighth graders will get out of class and take her up and down the steps.”

1-00:14:33 Hershey: Is that right?

Smith: Yeah—So I really think that some of my relative privilege of going to school came about because he had a position of some authority. Even though it was a very small system, he was a small town guy. Nevertheless, he was principal of the high school.

1-00:14:56 Hershey: So did he arrange for any other types of accommodations for you? Other than just getting around the school?

Smith: No, no. The one other thing he did is, by the time I moved to the other school in Eureka, and it was slightly larger, there would be two second grades and two third grades and so on; he would makes sure my room was on the main floor there. I could be there with no steps. And he would also make sure—I had a little best friend, and I figured out, he didn’t tell me, but by the time I was in the third grade and the fourth grade and the fifth grade, and she was still in my section—I started to realize the law of probability had some arrangements going on there.

1-00:15:40 Hershey: And who was that best friend? Do you remember her name?

Smith: Carolyn Dick! Her phone number was 6-3-1, three digits only.

1-00:15:51 Hershey: Yeah? Oh, how funny.

Smith: I don’t remember my own, I remember hers.

1-00:15:53 Hershey: And what kinds of things did you two do together? Did you play?

Smith: Oh yeah.

Hershey: What kinds of—do you remember what kinds of activities?

Smith: Yeah. We were great, we just had a great time. We’d stay overnight, I’d go home from school with her, she’d push me; sometimes we’d get in fights. She would—she would [chuckle], this sounds really awful, but she would kick me and I would grab her ankle—but really we were friends, we just very—I was rough and tumble, and we didn’t fight that much. We would—play dress up, and we would tell stories—play board games, regular things. She had a little sister, and sometimes, we would go a whole parade around the block, where I would be in my wheelchair pushing myself. Next in the pecking order was Carolyn, she got her choice and she would take my crutches, and her little sister would be left with my leg braces, clunking along. [laughter] And we would walk around the block as a little threesome, tricked out. We had a good time!

1-00:17:04 Hershey: Yeah—Did you get in trouble for sharing your braces with another kid?

Smith: Uh uh, no. No one minded. So we would play, have a good time. That went on for years. And we still talk sometimes on the phone.

1-00:17:22 Hershey: Uh huh, wow. And did you have a lot of other friends at school, or was it a—

Smith: No, it was good until adolescence hit, it was good. I had friends. I had to make myself into—kind of a joker, and the one who would have ideas for stuff to do. so that I could kind of compete in the social world. And I didn’t have trouble getting good grades, and that was fairly valued, and so I would end up, you know, being secretary of the class, and that sort of thing. And my little friends [in my neighborhood] were boys, because they were my male cousins. Those were my favorite years, about age—second grade on up through sixth, seventh; where we ran wild in the summer, in the good sense. We didn’t have—it was a small town. It’d be my little brother and my three boy cousins and me. We’d be gone all day, come home for lunch, and be gone again, all summer.

1-00:18:27 Hershey: And what kind of adventures would you do together, with those boys?

Smith: We would have many, many imaginary games. We tried to dig a hole to China, as so many kids do. We knew it wasn’t to China, but we thought we would actually have a livable underground cave. We tried to make a raft, we spent days hammering boards on logs to make a raft.

1-00:18:53 Hershey: Was there a river near?

Smith: Well, there was a creek. And we thought we would go down the creek, to the Mississippi, and go on the Mississippi. Of course that did not work out. One time [chuckle], they would push me everywhere and I could push myself some, and we were out in the country once, for a family get together; and sometimes we would play that not-too-nice game, big kids run away from the little. And I was one of the three bigger ones, and my little brother and his cousin were the little ones, and we decided to run away from ‘em. The three of us took off, with them pushing me down the country road as fast —and we knew they were on our heels. And we actually got to a fence in a cornfield, and I got out of my wheelchair and they collapsed my chair and pushed it under the barbed wire fence, and I rolled under the barbed wire fence, and we continued across the field.

1-00:19:58 Hershey: So you ditched the little kids?

Smith: We ditched them and made it to a creek. And then they found us, a little bit later. I loved those years. That was—I just had a lot of fun.

1-00:20:12 Hershey: Yeah, yeah. Did you have —in that little town during those years, did you know anybody else who had a disability? Were there adults that you knew, or other kids?

Smith: There were no adults, but there was Martha Kleimer, a couple years older. She had severe cerebral palsy, and she was not in school, but she was tutored at home. And she would type me letters once in a while, and I met her once or twice.

1-00:20:42 Hershey: And she was right in that same small town?

Smith: She lived in the country, but—

1-00:20:47 Hershey: Oh, outside of town.

Smith: Right. I met her once or twice.

1-00:20:54 Hershey: And what was that like? What did you think about her?

Smith: I was a little bit scared of her. I was scared of her because—I couldn’t understand her speech. But also, there was this thing that I could feel in the air that I was supposed to like her or something. And I didn’t dislike her but— you know what I’m talking about, there was feeling you’re supposed to like

her, and there was probably, I’m guessing, a little bit feeling of, well I may be disabled, but I’m not that disabled. So there was some discomfort. At the same time, she was very friendly and warm. She—and so I—the two or three times I was with her, I kind of liked her personally. So it was complex. That’s the only disabled kid I knew, except for people I would go to the hospital sometimes and hang out with kids.

1-00:22:03 Hershey: Yeah. So did they take you back to the hospital from time to time for different treatments?

Smith: Well—probably the worst mistake the doctors made was to try to make a walker out of me. And so they had me fitted with these leg braces, but I had really poor balance.

1-00:22:21 Hershey: Did they try to make you walk on those—just—unassisted or with crutches?

Smith: With crutches. I even had a fairly hard time staying upright with crutches. So I would fall quite a bit. And because of that walking, I became super knock- kneed, even though I had leg braces on. So, they sent me down to Warm Springs, Georgia, about 800 miles away.

1-00:22:49 Hershey: And what year was that?

Smith: I think I was six. And my mom and dad went with me, but then they had to leave. And I had surgery on my legs to correct the knock-knees. It was pretty major; a big leg-body cast—up to the waist, and you know both legs spread- eagled. And down there, with not a relative in sight, not a friend in sight.

1-00:23:12 Hershey: How long did you stay there at Warm Springs?

Smith: I think it was three or four months, and then I went back and stayed there again, I’m not sure. A year later or something.

1-00:23:20 Hershey: And did you like it or were you pretty lonely?

Smith: It was a mix. What I liked was being on the ward, where I think there were eight little girls. We would, you know, kids will play, they will find a way. And we did all kinds of stuff—shenanigans. And I loved that. But I was also very scared some of the time, because stuff would happen and there would be nobody I could really tell. And then the worst thing that happened that whole time—I had made my way into society, in that room, because when I first came in I was one of the younger ones. But also, most of them were Georgians. We’re talking the Deep South, in the 1949-50-51. They called me “the redheaded Yankee.” [laughter] And it was not a compliment. But I

worked my way into having friends and playing with them. But then, one day, fairly near the end of my stay, I think, some people came, and they cleared out my stuff. And they moved me out of that room, down a couple floors to what they called the baby ward. Without preamble, I lost every nurse I knew, every kid I knew, never saw them again, ever. I might as well have been moved to Cincinnati. I was really, really heartbroken. And if I had parents around, they would have said, “Why are you moving my daughter? She just got to know these people; she’s friends with them.” I don’t think my parents even knew about it. So, I don’t know—they didn’t explain why. My notion is that somebody whose parents wanted their kid in there with the older kids just said, “Move this girl out, I want to be here.” So that was horrible for me. I remember being down in that new ward crying, and the nurse not being very sympathetic. That was quite traumatic. It was also where I first saw, really the first black people I ever knew. And they were aides, you know they were aides.

1-00:25:37 Hershey: No patients or residents?

Smith: Absolutely not, they wouldn’t have been allowed in.

1-00:25:42 Hershey: Was it, it was segregated?

Smith: Segregated. I’ve since met African American southerners who even had their segregated disability black school.

Hershey: Yeah, yeah.

Smith: So, that institution was one hundred percent segregated. I don’t know where the kids—black kids with polio went.

1-00:26:02 Hershey: But a lot of the workers were African American?

Smith: None of the nurses, of course. But the aides, some of them.

1-00:26:10 Hershey: And did you have—did you make any kind of connection with any of them?

Smith: No, I remember some of them. I remember—Ben and Maisy—those are the only names I remember, I don’t remember any white nurses’ names. I watched and I figured out that these were the people who were less respected, by the kids, by everybody. But they were grown-ups, and I had trouble putting all that together. I didn’t ask anybody about anything.

1-00:26:52 Hershey: So then, when you went back to your home, after Warm Springs, were you just really relieved to get back there?

Smith: I cried when I left. I remember my parents wheeling me down the halls, because kids make attachments. But I wouldn’t have wanted to stay. I just was crying because there were people I knew I wasn’t going to see again. I just went back home, but I don’t quite remember what my arrival was like.

1-00:27:30 Hershey: Yeah. So during those years when you were growing up, during elementary school, you were pretty much just a really involved—you were pretty integrated into the community life there?

Smith: Mm Hm. Right. I mean obviously, I knew myself to be an outsider from moment one, and was not in a family where I could actually talk about that. We did not—I think we were a typical family of the times, plus all Mennonite background and not known for—my parents didn’t come from families that talked about that kind of thing, and neither did we, really. I would not have told them my troubles. Even there in the hospital, I wouldn’t have told mom and dad.

1-00:28:25 Hershey: Related to disability or related to anything?

Smith: Mostly related to disability—— For example, when I was at the elementary school in Eureka, Illinois, when I was about in the third grade, there was this eighth-grade girl named Margaret Moreland, from a big family. She took it into head that I should have faith and walk. Well, I would be stopped in the street and told that [by strangers], but Margaret harassed me every noon hour and every recess.

1-00:28:59 Hershey: How long did that go on?

Smith: Weeks. And I would cringe, I would try to hide from her. But she would relentlessly find me, and told me how Jesus wanted me to walk.

1-00:29:08 Hershey: And what was her religion?

Smith: She was Nazarene! Well anyway, I didn’t tell my parents about it, but one night they were gone, and they were rarely gone—they rarely went out, we’re small town people. One night mom and dad were gone and my sister was babysitting us, and I was in my bedroom, which was right next to the living room, where I knew she was, and I started to cry audibly. And of course she came in, and then I told her about it. And she said, “I’ll take care of it.” And she did.

1-00:29:43 Hershey: What did she do?

Smith: I think—My guess is—I don’t think she told me, all I know is Margaret Moreland never did it again; I think there were some older Moreland kids, well I know there were, and my sister just went to one of her classmates in high school and said “Your sister is doing x to my sister, tell her to knock it off.” But all that went on without my parents knowing about it.

1-00:30:06 Hershey: So she was older than Margaret, too?

Smith: Yes, she was in high school.

1-00:30:10 Hershey: So she just took care of it without going to your dad, the principal, even?

Smith: Oh, we stayed away from my dad, the principal, as far as we could!

1-00:30:20 Hershey: Was it strange to be in school and have your dad as the principal?

Smith: It sort of was, but he stayed away from us and we stayed away from him. [Actually by that time he was superintendent of the district, five small schools total in three small towns.]

1-00:30:27 Hershey: So there wouldn’t be any favoritism?

Smith: I don’t think there was any favoritism, I mean, there had to have been a little, but we all had our kind of—he made us behave at home, so it’s like we behaved at school, too. He was quite—you did not cross him too much at home, or in school. We never saw him in school.

1-00:30:51 Hershey: So was the Mennonite religion or the church a big part of your life?

Smith: Yes. We were Mennonite, both sides: mom and dad, all the grandparents—— generations back. Not a drop of any but Mennonite blood. So, that was very influential.

1-00:31:11 Hershey: Did—What did the, like—the community activities or family activities center around the church? Or was it more just every Sunday?

Smith: It was every Sunday, and permeating the entire consciousness, plus the entire extended family lived in the same county. So I’d say, maybe ten percent of the community was themselves Mennonite, but the others were other religions.

1-00:31:42 Hershey: Okay. So this Nazarene girl thought your disability was because you didn’t have enough faith. What kinds of messages, if any, did you get from the Mennonite church about disability?

Smith: Just regular ones. Regular ones in society, but not—not, “You could walk if you had more faith.” That would not be a part of the Mennonite, thank goodness. One time, my dad had a cousin who became fundamentalist, and was no longer a Mennonite. He was a second cousin, he was visiting us from out of town. In our own home, while we’re sitting in the living room, he started to say to my parents that if they had more faith I would walk. I remember Dad said, “Well Cyril,”—I was lying there, I was lying on the floor —“Cyril, you wear glasses.” Cyril said some baloney kind of answer. I kind of wish that they had said, “You do not say that in my house. If you are going to continue saying anything like that, I would like you to leave.” Because it was such a horrible thing to say, but my parents, you know, were much more polite than to do that. In fact, I remember feeling kind of happy that my dad stood up at all to him. It was an interesting childhood. You know, it was at the time when, literally, if I was out on the street, away from my home town in a different town, kids would literally turn around and walk backwards to stare at me. I was such—Disability was such a phenomenon. It was like you were stared at constantly—far more I think than happens today.

1-00:33:39 Hershey: But you were pretty accepted in your town and not stared at?

Smith: Yeah. I was accepted in my town. I’ve always been kind of glad that, you know, the same kids I was in first grade with I was in second grade with, and the same kids I was in third grade with. I’m glad I didn’t have to fight that battle over and over again.

1-00:33:58 Hershey: So is there anything else you want to talk about from young childhood? Or do you want to go into adolescence?

Smith: I’ll just say that I’m glad I was one of five kids, I’m glad I had a lot of siblings.

1-00:34:09 Hershey: And why was that?

Smith: Well, I think that—it was very sad for my parents that I was disabled. And, they never said it, but I think I was a great tragedy. In fact, I found that out on their fiftieth anniversary, when they were interviewed. When they were asked what the hardest year of their life was, these people had been married for fifty years; [they had had one baby who died at four hours old] and Dad said, “Well, I think that would have to be the year Eleanor got polio.” And then mom said, “And the second year after that was even harder, because that’s when we realized she wasn’t going to get better.” So you know, there’s a way in which I was “the tragedy,” so to speak. But—that didn’t permeate everything. And that’s why I’m glad though that there were five kids.

1-00:35:06 Hershey: Yeah, they were too busy to dwell on it.

Smith: [laughter] Exactly! They were too busy to dwell on it.

1-00:35:10 Hershey: Did your siblings help out with your getting around, or did they have any—

Smith: Yeah, they did. They did. My little brother in particular, we were you know, playmates, constant playmates. Fighting mates and playmates. And you know, for years. But when we got a little older, he was kind of saddled with doing some things for me at school, like getting me up the steps in high school, which I don’t think he was thrilled with. But they really didn’t have to do too much of that. My older brother was very sweet and kind of liked to. He’d push me to school through the snow. He was four years older. They were not required to do a great many things to assist me.

1-00:36:07 Hershey: Did you get any messages, like when you were younger, about what you would be as an adult? Like what you would expect to grow up and do?

Smith: I was told something by my mother when I was twelve that I have since found out other kids were told. She said, “You’re going to have to keep doing really well in school, because you’re never going to get married.”

1-00:36:36 Hershey: And did you believe that, or did that make sense to you or what?

Smith: I—I think I believed it. It was said in such a —she didn’t say. “You may not be getting married,” I mean, I didn’t know if there was a law against it or what. But again, in our family I wouldn’t have said anything like “What do you mean?” or, I just thought, hmm—she was right. [laughter]

1-00:37:00 Hershey: But for a different reason.

Smith: Yes. But that was a pretty heavy message actually.

1-00:37:11 Hershey: Yeah. So do you feel like you were motivated to do well academically because of that?

Smith: We all had to. We were all forced to do our—yeah, we better bring home good grades.

1-00:37:22 Hershey: By the way, what was the name of that grade school that you were in for quite a few years—what did you say? Third grade through—

Smith: I think it was just called Eureka Grade School.

1-00:37:33 Hershey: Okay, and then what about high school? Where did you go?

Smith: First I went to Eureka High School, for two years. And then my dad was asked to be president of a little bitty college, a Mennonite college in Kansas. And so, there were only two kids at home anymore, and we all packed up and moved to Kansas.

1-00:37:55 Hershey: What year was that, or how old were you then?

Smith: I think I was sixteen.

1-00:38:01 Hershey: And what was the name of the college?

Smith: It was a junior college called Hesston College, in Hesston, Kansas, population 900.

1-00:38:09 Hershey: 900 again, huh?

Smith: Uh huh, or something very like. And it was an academy and a two-year college, and basically it was failing financially. And my father who was a good, a really good administrator was asked to come out there and save the day. And he had to ponder long and hard whether to take a pay cut and go out and try to save a failing Mennonite college, which he succeeded in doing.

1-00:38:39 Hershey: Really? And why did he decide to do that, it was for altruistic reasons?

Smith: Yeah, it really was. I admire that. That was it.

1-00:38:47 Hershey: And so, you went to high school there?

Smith: The last two years, yeah.

1-00:38:52 Hershey: Okay. And what was the name of that school, do you remember?

Smith: Hesston Academy.

1-00:38:56 Hershey: Oh, and so it was the one that your dad was—?

Smith: Yes, and that was worse. That was the worst part of it; all up ‘til then, we could be separated from his administration. We never saw him all day long. There, he like—We had to go to chapel everyday, and one day a week he was the chapel speaker: oh no, oh God, let me out of here. But [chuckle] and that

[environment] was very Mennonite, and I became more of a Christian at that time, of a kind that I basically admire even though I’m not one. You know, Mennonites have a pacifist tradition, and so, we were always raised—we knew that we were regular people, but we also were raised that there’s a point at which you don’t go along with the mainstream. I think that was a very valuable heritage. And while I was at that Mennonite academy, I met a lot of thinking young people. I mean that was a place where you sent the misbehaving Mennonites from Boise, Idaho, but also some of the more contemplative or—I don’t know, just good kids. I was taking some really good Bible classes, and I became quite a earnest Christian; which would not involve going up to people and saying “Are you saved?” But I was, in terms of adolescence, I mean that’s when I figured out I’m not going to be able to— my regularness and popularity is now going to go spinning out into the netherworld and become a source of pain.

1-00:40:40 Hershey: So was that—did that happen already in Eureka?

Smith: Yeah, back in Eureka.

1-00:40:45 Hershey: So how did that act like—you hit puberty and people just—?

Smith: I hit puberty, and people still liked me for student council, but would never ask me out for a date. And, meanwhile, this is sad to me, I’m just thinking; but my sisters were, you know, and my older brother, they were socially very popular and you know, went out a lot, and dated, and ran around. And all of a sudden, whoops; for the first time I’m not seriously not being able to be what they were able to be. And it was strictly disability related, and it was also because I think—I think it would have been very hard for what was perceived as a severely disabled person—to have a dating life, but it was probably even more so for me, because I wasn’t the kind of girl who would smile at the little boys, and bat my eyes, and say “Thank you so much, Jimmy.” you know. So I became, you know, I still had a lot of friends, but a huge—

Hershey: There was a different—

Smith: -- a huge difference occurred right about age thirteen.

1-00:42:05 Hershey: Did you still hang out—or did you go out with groups of kids, or did the fact that you weren’t dating kind of cut you out?

Smith: No, I still went out with groups. I mean, I would be invited, thank God, to the slumber parties of the girls, and I had by that time had another best friend and we three would run around, and had a great time.

1-00:42:25 Hershey: Were you still best friends with Carolyn?

Smith: Mm hm.

1-00:42:28 Hershey: And who was your new best friend?

Smith: Harriet, Harriet Southerlan. And there were other people in that same group, who I just really liked. I always felt good about that. But you know, by the time we went out to Hesston it was still the same way, out there in that religious college. I did have a crush on this one guy, but he would have no idea that I did. And I had a crush on this one girl without really figuring that out. So I went on.

1-00:43:04 Hershey: So when you moved to Hesston, was it hard to like, make new friends at that point, after having had the same friends for years?

Smith: No, it wasn’t too much. I made new friends fairly fast.

1-00:43:20 Hershey: Did you have any access problems at that school, in your high school?

Smith: Yeah.

Hershey: What, was it—

Smith: I mean in my other high school, the other kids in Eureka, it was a nightmare of steps. The kids toted me around.

1-00:43:35 Hershey: You were still using a push chair, right?

Smith: Yeah, and then at Hesston a lot of my classes could be on the first floor, but some of the bigger ones couldn’t. And my younger brother was drafted, probably by my parents, as meeting me at certain points and pulling me up the steps. Which he resigned from, as soon as he was able.

1-00:44:03 Hershey: Yeah. How much younger than you was he?

Smith: Two years. And he was slight and slender, but very good at getting me up steps. He knew the technique, he could get me up a long flight by himself. So when I was in the middle of my freshman year of college, I thought, I’m done with being where my dad is. And I couldn’t transfer to the other Mennonite school, where all like lemmings went, and I admired that other school, Goshen College, Indiana where my parents had gone, and all my siblings, and I was

going to go. But I couldn’t go there right away, for access reasons. They had so many—

1-00:44:44 Hershey: Really?

Smith: Yeah. Oh there was a nightmare of lack of access also.

1-00:44:47 Hershey: So you started college in Hesston?

Smith: I started college in Hesston, and then at the beginning of my freshman year, I thought, I’m not going to stay here. I don’t want to be where my dad is. But I wasn’t able to transfer to that other Mennonite college, because I had too many big classes that still had to be taken wherever they could put them. You know what I mean? And so, I worked my way, by myself with no driver’s license, I got myself accepted in a school of about six thousand people in Kansas, a state school in another town. And my parents reluctantly took me. They did not want—they would not help me in any way, other than drive me there.

1-00:45:31 Hershey: And what was the name of that school?

Smith: Emporia State Teachers College. In Emporia, Kansas. And of course secular and of course six thousand students, which to me was large. But I was bound and determined, and I went. In the middle of my sophomore year, I went. I said freshman, but that was wrong. I started working on it then, but I didn’t get it figured out to actually go there. And I hadn’t been there but five days when I fell completely in love with this certain woman. She was something else!

1-00:46:10 Hershey: Do you want to say her name?

Smith: Lynn. And she fell in love with me as well, so it was quite something. We’re talking Kansas, 1960-something, early sixties.

1-00:46:24 Hershey: And were you living in a dormitory?

Smith: Right, that’s where I met her. And she was—she didn’t identify as a lesbian and neither did I. Although I had figured out that I did have crushes on—that I more than had crushes on girls. And was kind of semi-anxious about that, scared a little bit; reading back in the stacks, opening books of abnormal psychology, reading about lesbians. And knowing—and having that feeling, oh God, somebody could catch me reading this. So there was all that going on, even back at Hesston College. But here, I was—I just met her, and we just— we didn’t know we were lesbians, but we knew we were crazy about each

other, and we spent all our time together. And held hands all the time, and talked philosophy, and that was very formative to me. She really loved me, I really loved her, and it was very good.

1-00:47:29 Hershey: Interesting. Was there—Did you talk at all with her about your disability? Or were you scared to tell her?

Smith: Yes. I would tell her some of those old stories, and she would tell me old stories of her childhood for sure. We talked a lot about that, not with a lot of insight, but we still talked a lot about it and that’s where I met my first disabled people who were not in hospitals, too. Carol lived right across the hall from us, she had spina bifida. She had brought her horse to pasture just outside of town, and would go out, get from her wheelchair onto the hood of her car, all by herself, her horse beside her car, get on her horse, and ride away.

1-00:48:17 Hershey: Wow, that must have impressed you.

Smith: I was very impressed. She also taught me how to do something physical that was very helpful. You know, back then, there was almost no access. You couldn’t get into any public bathrooms, I don’t know what all I did. She showed me, “Well you just do this.” She pushes herself—she had no strength in her legs, so she was kind of like me, physically. Pushed herself up and swiveled so that she’s sitting on the arm of her wheelchair, balanced over the chair, reached down and grabbed the other side of the seat, put the pedals up, put the pedals up before you jump up, narrow the wheelchair while you’re sitting on the arm, reach out, and push yourself through the narrow door, plunk down inside it, and the chair widens.

1-00:49:10 Hershey: Oh my gosh.

Smith: Oh my God, I said, “Carol!” I used that for years.

1-00:49:13 Hershey: Did you really?

Smith: I used it for years; it really got me out of some pickles.

1-00:49:17 Hershey: So, there in your dorm, did you have any accessibility?

Smith: Yeah, the dorm, was accessible somehow.

1-00:49:23 Hershey: Bathroom, too?

Smith: Yeah, I didn’t have to do that to use the bathroom, I don’t think, and there were showers I could get in. So I don’t know how that came about, because it was way—much, much pre-ADA [Americans with Disabilities Act]. Maybe it was post—some of those early laws might’ve impacted public colleges back then. Anyway, it had basic access.

1-00:49:47 Hershey: And you said there were other disabled students, too?

Smith: Uh huh, there was Carol—I wasn’t in any kind of a disabled students’ group, but then there was this other person with red hair, I don’t know her name, had very weak upper extremities, because I remember Lynn comparing me to this other person, and why this other person was a wimp, and I had to point out to Lynn, “This other person has weak arms, Lynn.” But—that was a good interlude, because I met her.

1-00:50:26 Hershey: What were you studying then?

Smith: I was heading for being an English major, and I became an English major.

1-00:50:33 Hershey: And what was Lynn studying?

Smith: She was a history major.

1-00:50:37 Hershey: And did you introduce her to your family?

Smith: Yeah, I took her home with me [for a day or so at the end of the semester]. She was like this—so different from me; I mean she smoked cigarettes, she had long, dark hair, it was pre—hippies were just starting, but she was not a hippie, she was her own invention. Everybody else had short hair, but she had long hair. And she had sort of a light chalk-like makeup. She had seen somebody in church as a little girl, and had modeled herself off of that. And the hippies at school, the very tiny hippie group at that school, came over and thought they would be friends with her, but she was not a groupie of any kind. So, she was her own invention. And then she was just drawn to this open- faced, corn-fed, Mennonite. [chuckle] Of course I lost my religion very soon after that.

1-00:51:45 Hershey: Why?

Smith: Why?

1-00:51:47 Hershey: Yeah.

Smith: Well, she was an out-and-out atheist. And I would lie awake at night, worrying about her soul, honestly. I would pray that she would become a Christian, so that she wouldn’t go to hell.

1-00:52:06 Hershey: And did you tell her that?

Smith: Uh huh. Well no, I didn’t tell her that, but—because I wouldn’t have told her that [I was praying for her]. But the very first conversation we had, when we fell totally in love, was in the first week when we were both brand new. She had just come, and she asked me—I had said something about my background, and she asked me if I was a Christian. We began a debate, right there. A very interesting debate, that went on for half an hour. And the other people in our dorm room just sat there, and they were totally fascinated by it, they didn’t make a peep. And we were completely—I remember that she said eventually, “Well, do you think I’m going to hell?” And I said, “Well, the way I read the New Testament, yes.” And she said—and she was very relieved, and she said, “Well you’re the first person that’s ever been—had the nerve to come out and say that. They all say “They don’t know.” She really liked—she loved that, that I said that. And I went home that Easter and went to the Bible teacher at Hesston, and tried to find a book that would persuade her. But shortly after, I came around to her point of view, and she was rather disappointed I think. [laughter]

1-00:53:34 Hershey: She liked the arguments and the debate?

Smith: She liked me to be [pause] a moral, innocent, earnest girl; which I continued to be. But I think she was a little alarmed. It wasn’t her arguments that won me over, it was just a couple of other things I thought, God, you call me, because this is not making sense. I mean the whole—actually I remember wheeling real fast to the dorm one day, and thinking, why am I wheeling fast? And thinking, I know why I’m wheeling fast, I’m going to see her. And then that’s when I said, “I’m in love with her. I’m in love with her!”

1-00:54:24 Hershey: How long after you met her did you realize that?

Smith: Three or four weeks. Then I thought, God would not like that, supposedly. And then I thought, no, that’s too bad. If you don’t like that, something’s not adding up here. So, I never had any theological angst about that. It turned out that she did, later. Not theological, but years later—because we kind of stayed connected for a good long while, years later I discovered that although she was an intellectual atheist, she was very bound by her Catholic religion, and was way more homophobic than I was. Huge internal homophobia.

1-00:55:16 Hershey: So, did that prevent you from—I mean did you actually consider yourselves a couple during that time?

Smith: Kind of. Later we did. We spent weekends together, but we never occupied, after the dorm years, the dorm year, even though we continued our relationship over miles, off and on, including after her marriage and divorce, we never really got it together. We would say we were in love. I said—I remember saying to her, “I’m queer for you.” That was the friendliest word I could think of. I mean, it was very explicit. And you know, we had sex—and made love, I should say, both. So actually, she did not have issues about my disability, really. That was just—interestingly, I’ve never thought about it until now, but that was just not there, very much for her. I think because she considered herself, she really liked me for who I was, but I also think she considered herself an oddball. And that made her gravitate toward other people who would be considered by others as oddball. But I never ever had a sense that she was picking someone she considered “less-than,” and God knows I wasn’t. So—

1-00:56:56 Hershey: So how long did you stay there at Emporia?

Smith: Just one year. I stayed there the spring semester, when I fell in love with her, went away for the summer, came back, and she and I and Carol, the other disabled woman, moved into an apartment for the next semester. And then I traipsed off, as if under hypnotic forces, to the Mennonite school.

1-00:57:22 Hershey: To Goshen?

Smith: Uh huh.

1-00:57:25 Hershey: So, you lived in an apartment in Emporia, Kansas?

Smith: Mm hm. Post-dorm.

1-00:57:34 Hershey: Did you find a place that was reasonably accessible?

Smith: We did, not too easily, but we found one that just had maybe a four-inch step, and I was able to open the door, and strong enough to grab the sides of it and pull myself in. And Carol was able to do that too. We might have made a little wood ramp, I don’t know. The bathroom, we did not have to make the door wider, and I was strong enough to be able to heave myself into the tub, as was Carol; after all, she could get on a horse from a car. So we were fairly strong.

1-00:58:11 Hershey: At this time, did you think of any of these access issues, or things like that as, kind of like disability rights or discrimination, did you think of those?

Smith: I did not. I did not think of them as disability discrimination. I thought of them like—I have said this thought before as I’ve given talks, I thought of it like the weather. It’s either storming or sunny. If it’s storming, you’ve really got some problems on your hand, if it’s sunny, thank goodness, I can get in. I did not really see it as resulting from human decisions.

1-00:58:52 Hershey: Right. Or think of it as something that could be changed.

Smith: Not really, ‘til many years later.

1-00:58:55 Hershey: Yeah. What about Carol, did she think the same way, do you think?

Smith: Right, she did too, same like me. I never met anybody who was into disability rights, for many years.

1-00:59:08 Hershey: Um, well since this was like in the early sixties, were you becoming aware of other minority rights movements?

Smith: Absolutely. I was very—I joined the NAACP. I—

1-00:59:18 Hershey: There in Kansas?

Smith: I did that when I was in Goshen College, so that would have been when I was about twenty-one, which would have been 1965. I would watch TV with the people being hosed and chased by dogs, and tears would just run down my cheeks, as they did with many people. I was very emotionally involved with that civil rights movement.

1-00:59:46 Hershey: Were you active in it too, or just more supportive?

Smith: Just more—just very slightly, just in that I joined NAACP and subscribed to a couple of—I subscribed to Ebony. But—Had there been actual activity around me, I might’ve. There was not any activity around me.

1-01:00:14 Hershey: So what year did you go off to Goshen?

Smith: Well, it would’ve been [pause] ’63?

1-01:00:25 Hershey: And what made you decide to do that?

Smith: I just was moving in a trance. It was that that’s what we do.

1-01:00:39 Hershey: Your family?

Smith: It’s what my family does, and my family’s family does.

1-01:00:43 Hershey: So it’s a tradition?

Smith: Tradition. And I also had positive feelings about it from childhood, when I looked up to those touring choirs that would come to our church, and looked up to the kids who came home with my older siblings from college. And I don’t know what I thought would happen with Lynn. I honestly though she would just wait for me, we were so madly in love.

1-01:01:05 Hershey: Oh really?

Smith: We talked about—in spite of the fact that we talked together by the hour, we had no—we were clueless in so many ways. [laughter] Oh, she said she wasn’t going to write to me, she wasn’t angry, but she didn’t write letters. We saw each other that summer. Anyway, she got married to my complete—I was so shocked, I was a senior in college, and I wanted her to come and visit, she hadn’t visited. That was probably going to be the time when I said let’s figure something out now. Instead, I got a letter in the mail, “ I will not be coming to Goshen, Indiana,” a picture of her with her husband, and said, “ I got married. I knew I did not love him. I will never love anybody but you.”

1-01:02:07 Hershey: Oh, wow.

Smith: Oh, I mean talk about a lesbian tragedy, you could call it, truly. I mean I saw her after that, she got divorced. We were together quite a bit after that, but at that time, I was so shocked, and had nobody to tell. Nor had I told anybody I was in love with her. Who would I have told?

1-01:02:37 Hershey: So even Carol didn’t know it, and she was living with the two of you?

Smith: Well, she figured it out [I think]. But I mean, I wasn’t connected to Carol anymore, I never felt super close to Carol. And I wasn’t living with her anymore. She was still back in Kansas. But when that letter came in the mail, I literally found myself on another part of the campus, in a hall by myself, and did not know how I got there. I was [pause] dumbfounded.

1-01:03:14 Hershey: So how did you react, beyond that? I mean how did you—what did you do?

Smith: I didn’t do anything. I—

1-01:03:23 Hershey: Went on with your studies?

Smith: Well, I went on with my life.

1-01:03:25 Hershey: And where did she settle when she got married?

Smith: She went to Alaska, with her husband. And I went to the University of Illinois, which I had already applied to.

1-01:03:36 Hershey: So that was after you graduated Goshen?

Smith: Mmhm.

1-01:03:40 Hershey: So you were doing graduate school?

Smith: I went straight to graduate school.

1-01:03:43 Hershey: So what was, what was your major at Goshen? Was it English?

Smith: It was English with a Spanish minor, and also of course, your education degree. I went straight to University of Illinois—

1-01:03:57 Hershey: To study what?

Smith: Get a master’s degree in American lit and literary crit. That was a school well known for its access.

1-01:04:08 Hershey: In Champaign-Urbana?

Smith: Right. That’s probably why I chose it.

1-01:04:15 Hershey: And so what year was that you started at UI?

Smith: It must have been ’64—’65! ’65. I’m really not good with dates. I know the year I was born, most people can just say when they graduated college, I have to stop and think. I think I graduated college ’65, got my master’s degree in late ’66.

1-01:04:38 Hershey: So did you encounter, like, a disability community there at UI?

Smith: Well, I mean my first shock was—I thought, well I’m going to this school, I got accepted by the graduate school in English; and I took a couple weeks off, and I’m at my uncle’s house, and my parents are there too I don’t know why, and I get this letter from the University of Illinois saying that I’m not accepted until the disability office also accepts me. I’m in shock! I’m in terror! What?! I thought I was just going to college and they were going to find me a dorm room. They said, “You do not get in the college until the disability office also gives the stamp of approval.” And I had to fill out their form, including how long were my legs and arms. Because I remember, my brother, my little brother, he and I making the most crazy jokes as he measured my arms and my legs and wrote that down on this form. I ate humble pie very quickly, “Oh, yes sir! I’ll be out there right away for my interview with the disability office.”

1-01:05:48 Hershey: Because they wanted to make sure that people were self-sufficient?

Smith: I guess.

1-01:05:53 Hershey: I read something about that. That you really had to be physically self- sufficient in order to go to school there.

Smith: Well, there were people who were more disabled than I was, but I mean I think it would totally illegal now to say you can’t—

1-01:06:15 Hershey: Oh yeah.

Smith: Back then, I was terrified that they held my future in their hands.

1-01:06:22 Hershey: And how long did it take? So you had to fill out the form and what else?

Smith: And then I had to race over there, being driven by my parents, because I still didn’t have a drivers’ license, and go through an interview where I ate humble pie and proved my competence in every way I could. And then I got put in a dorm with another disabled person who I really liked.

1-01:06:44 Hershey: Who was that? Do you remember?

Smith: Elke Gaarlandt from Holland; who was in law school. And we were put in a little duplex, so to speak, with an accessible bathroom between us, in a regular integrated dorm. But we were thrown together, because not all the bathrooms were accessible. And it turned out we got along really well.

1-01:07:08 Hershey: And what was Elke’s disability?

Smith: She was actually spinal-cord injured, and had been a victim of U.S. bombing of Amsterdam.

1-01:07:22 Hershey: During World War II?

Smith: Yeah. She was slightly older than I, not much. She was, I think, twenty-six to my twenty-one. And the house fell down on her and broke her back as a four year old. And severely injured—blinded her father, blinded him in one eye, deafened him in one ear, made his face fall on one side, while her mother was unscathed. And she was over there going to law school at the U of I.

1-01:08:02 Hershey: And did you room with her for a while?

Smith: Yeah, uh huh, a whole year. And so, she would tell me—we were in the most disability culture that I had experienced up to that point. Sometimes we’d go down to the disability center, not necessarily together, we were in this little review of disabled people, made a little comedy show. And it went to Chicago. It wasn’t very good. And we sang songs.

1-01:08:31 Hershey: And what was it about? Was it anything about disability?

Smith: Mmhm. Because we had this take off on My Fair Lady, which had this song in it, “I’ve Grown Accustomed to her Brace.” [laughter] [pause] Yeah. Mostly, I didn’t do a lot with it. But I remember being friends with a guy named Bill, friends with a guy named Benny, knew a severely disabled woman named Charlene; these names all come back to me. Would sing some with this guy named Benny, he played the guitar well. And mostly I hung with Elke and my other Mennonite person who’d come to that school, and didn’t really make any lasting friendships outside those circles.

1-01:09:28 Hershey: And you were planning to do what? Teach?

Smith: Emphasis on the “what.” I hadn’t put one thought ahead of the other one. I did not have a clue what I was going to do next. I didn’t feel scared about that. It really reminds me that young people often [pause] some really do think ahead, but others just don’t. I did not think ahead, I just had this vague idea that I would do something. So I was getting near the end of my masters’ degree, had made not plan one, nor was I particularly worried, I don’t know what I thought. I get this letter from Hesston, Kansas school system. They understand that I’m graduating with an English degree, public school by that time, would I be interested in an English position, teaching.

1-01:10:33 Hershey: Wow.

Smith: And I said—

Hershey: They found you. Do you think your father had—?

Smith: Absolutely. At the time I thought, wow! How did they know that? Later I figured out, well of course. That’s one of the strings my dad pulled. [laughter] So—

1-01:10:55 Hershey: Were you excited by that offer, or were you just—?

Smith: I was mostly where my head was, with Lynn, being in love with her. She had come out there and we had had a really good time.

1-01:11:09 Hershey: Even after she was married?

Smith: Yeah. I think she was divorced by that time, if not then, soon after. She was the emotional reality, and I loved my academics as well. I really loved my masters’ degree, I loved studying American lit, lit crit. So I was very excited—pretty excited by the world in general somehow. I’m kind of bumbling my way through, and this job offer came, and I realized I had no other plans, and I realized that would mean moving home, too. My parents still lived there, I moved home. I lived in their house as a—basically an agnostic lesbian, without their knowledge of that, but still not feeling secretive. After all, I never had told them certain things, so it didn’t bother me not to tell them those things. And I know, by that time I had gotten a car, gotten a driver’s license there at the University of Illinois, had hand controls.

And I knew teaching would be quite an energetic proposal. I had made my way, dad had helped in some ways, kind of the unseen hand, but I knew that I was competent, I had done that stuff on my own. And I went and started teaching in what had become a public high school, it’s very tiring. Man! I would come home and I would be—because I always had some physical limitations, for energy. You know, I would be in bed way before other people all my life. So, when I would come home from a day of teaching that first year, I would just get on the couch, with a throbbing head, and could not read the newspaper for half an hour, just lay there. So it was good that I was home, mom was doing the laundry. Lynn had moved back to her hometown, I was seeing her a couple weekends a month, driving down there. I had that life going on. And I liked teaching, I really liked them. I liked the kids, I turned out to be fairly good at it.

1-01:13:48 Hershey: What grade were you teaching?

Smith: I was teaching high school English and Spanish, mostly ninth and tenth grade. Running the book club, being the sponsor for the book club. I did that for a

year, and it was pretty clear, for whatever reasons, that Lynn was not going be ready to have a partnership that was a partnership per se. Later I realized that it was largely homophobia, but I had no idea at that time. So I thought, okay I’ve been home a year—oh, my father made me pay back my school debt. So I got to live home free, but most of my income I was turning over to them. We were all expected to pay for our college. So I was paying back my school debt, and I decided, “I’m going to go to the Peace Corps now.”

1-01:14:44 Hershey: Really? So that was after like a year of teaching?

Smith: Mmhm. I applied to go to the Peace Corps, and I said, “I can drive, I’d like to go to a Spanish-speaking country, I know some Spanish. I’d love to teach English.” You know, I said all my assets. And I got back a letter, which I should have saved, “We do not take people with your level of disability.”

1-01:15:11 Hershey: So that was that.

Smith: Period. So I thought oh, well I’m getting out of the country one way or another. So I decided—and when I was telling my parents that I was thinking of leaving now, that’s when they put an interesting screw in that didn’t work at all. My father said, “Well, we don’t think you should leave until you’re solvent.” Meaning until I’d paid every penny back to them. And I was—I’m getting my story wrong, out of order. When I decided that the Peace Corps wouldn’t take me, I figured the Mennonite Voluntary Service Abroad would. So I applied to them, and I told my parents. And dad said I couldn’t go until I paid him back. Now this did hurt my feelings, because when the other children in the family, the older ones had gone into Mennonite service abroad, to be teachers in Africa or South America or whatever, dad had relieved a certain amount of their debt, because he was proud of them, and wanted to encourage this service to humanity.

1-01:16:29 Hershey: Do you think he was just worried about you going?

Smith: Yes. Yes. And so he said I couldn’t go, and I thought, wow, talk about a double standard in the wrong direction. My mother, in the kitchen said to me—she became very angry. She said, “The only reason you made it at Goshen was that dad paved the way for you.” I thought, these things really didn’t phase me too much, because I knew I had done it myself; dad was 800 miles away! I’m the one that made my day-to-day. I’m the one that took myself to Emporia State. I even sensed then that a) it wasn’t true, and then that they were just trying to keep me at home. They were trying to make me— I think that they had thought when I came home, that I would be forty years old. And still be at home.

1-01:17:21 Hershey: And that’s what they wanted?

Smith: Yes I think so, because I think that they were concerned for me. They thought, well, they were never particularly coddling, I mean I was running the streets as a little kid, you know, in a play way, but they also—the world is not a very easy place—they wanted me to not get in huge trouble, get in over my head; end up with a broken wheelchair in a back alley and nobody to help me. I sympathized with their concern. But I stayed home that extra year, paid my debt. The day I paid my debt, I said “I’m taking you guys to a steak dinner.” I took them out to eat and paid for their steak. And then I went in to Puerto Rico and taught school, under the Mennonites.

1-01:18:22 Hershey: Can I back up for a second and ask you—

Smith: Yeah.

Hershey: You said you were living there as a lesbian atheist. At what point did you really begin to think of yourself as a lesbian? Was it during your relationship with Lynn?

Smith: Yeah.

1-01:18:39 Hershey: Was it once you got to UI or was it earlier?

Smith: It was earlier. It was in the first two or three weeks [of meeting her, in Kansas].

1-01:18:47 Hershey: Oh okay, so you actually thought that word and you—?

Smith: Well, I thought, yeah, the word or the concept. I thought gay, I don’t know— you know, they had homosexual. It was whatever I thought, God wouldn’t like it and that’s too bad, it was that definite thing. It was whatever word you would put on it. I knew the word “invert” from those psychology texts. I knew it was a thing.

1-01:19:13 Hershey: And did you meet any other lesbians, maybe once you got to UI?

Smith: No.

1-01:19:19 Hershey: Was there any sense of?

Smith: There were some, no doubt. I wasn’t seeking them out. I didn’t know what lesbians really were. I was one, but I didn’t really know what the rest of them

were. So I wouldn’t have sought them out, because everything was—even though I labeled myself that and was willing to, I wanted to call myself queer to—

Hershey: Really?

Smith: Yeah, to Lynn. I said to her when we lived in that apartment, “I think I’m queer for you.”

1-01:19:52 Hershey: And you liked that better than lesbian?

Smith: I did. It sounded friendlier. So, I had that identity, but I didn’t have that identity outside of her, that came many years later.

1-01:20:09 Hershey: Had you gotten messages back, you know, as you were growing up, that were negative about lesbians and gays?

Smith: Oh sure. I along with a lot of people in my generation remember even in high school, there was this thing. If you wore green on Thursday it meant you were queer. Did you ever hear anything like that?

1-01:20:29 Hershey: I don’t—I vaguely remember something about colors, but I don’t—I was pretty oblivious.

Smith: You know, because I remember in my high school, at Eureka, kids saying, “Green on Thursday! Green on Thursday!” And I knew what that meant, but I was so far from identifying with it that I didn’t feel threatened. I hope this thing is recording!

1-01:20:51 Hershey: I hope so too.

[pause]

1-01:20:53 Hershey: Anytime you want to take a break, we can shut it off for a little while too.

Smith: Well, let’s do take a little break.

Begin Audiofile 2 Eleanor Smith

2-00:00:06 Hershey: So, we are continuing. Again, today is October 5, 2008. So Eleanor, I think we left you at—you were just going to Puerto Rico, can you tell me about that? What that involved?

Smith: Well, access wise, they put a ramp on the little house where the volunteers lived.

2-00:00:32 Hershey: So it was communal living?

Smith: Mm hm.

2-00:00:34 Hershey: And where was it? San Juan?

Smith: It was a suburb of San Juan called Caparra Heights. And my job was to teach in the school across the street, which was Puerto Rican kids whose parents wanted them to learn English really well. So the language of instruction was English.

2-00:00:59 Hershey: How old were the kids?

Smith: I taught fifth grade math, and all but one of the classes to the seventh graders. And I also had to teach first grade reading for a while, but I didn’t particularly have the training for that, I didn’t feel good at it at all. So we would, you know, we had to have religion everyday, so here was this agnostic teaching a little religious lesson.

2-00:01:28 Hershey: How did you handle that?

Smith: Easily, I don’t remember how, I guess my own little emphasis.

2-00:01:35 Hershey: Just followed the curriculum?

Smith: Followed the curriculum, but would go with whatever I could go with, the most. And that was only a small part of the teaching. When I first went out there, and had my orientation during the summer, I got to spend, I think it was two weeks with a family, fairly low income. Wonderful family, out in the country, that didn’t speak any English. That was one of my best experiences.

2-00:02:07 Hershey: Really?

Smith: Yeah. The young woman who was a little younger than I—they had no running water, she’d push me out to the outhouse across the bumpy lawn. We were buddies.

2-00:02:19 Hershey: And what were their names, the family that you stayed with?

Smith: Were they what?

2-00:02:23 Hershey: What were their names?

Smith: It was Tío Juan and Tía Juana [Rosado], and their three nieces and nephews, whose parents had died. Freddie, Nandi, and Rosa.

2-00:02:39 Hershey: And Rosa was your friend?

Smith: Yeah. I liked Freddie and Nandi too, they were considerably younger. So I stayed friends with them and—

2-00:02:48 Hershey: How long did you stay with them?

Smith: I just stayed with them ten days. But it was just very, somehow very intense. And then I would go back up there for weekends sometimes, when I had a ride. It was neat. I liked my teaching a lot, and I was writing to Lynn, and we actually—some stuff happened around that that isn’t particularly germane to this conversation, it’s more of lesbian interviews than disability interviews. Complexities, and heartbreak.

2-00:03:31 Hershey: Yeah.

Smith: But, my disability was not an issue in any of my teaching, ever.

2-00:03:41 Hershey: So the Mennonite Volunteer—What is it called? Mennonite Volunteer Services—

Smith: Mennonite Voluntary Services, yeah.

2-00:03:48 Hershey: And they didn’t have any problem accepting you into the program?

Smith: No they didn’t, and again, there I think that it was the parental—parents didn’t go to bat, but it’s not a huge religion, and if you have somebody who is out there being president of a little Kansas college, it’s not very likely you’re going to say, “We won’t take your daughter.” And I had already, you know, pretty much demonstrated that I could be useful to them, by teaching two years of school. So, it’s not like they took a chance on me, so to speak.

2-00:04:23 Hershey: So you were living in a house with other young volunteers?

Smith: Yes. And then connected ten feet away was the other house, with the house parentsof the unit, and one of the young men, and their little boys. So that was a pretty good year; year and a half, really—It was pretty amazing.

2-00:04:49 Hershey: Do you feel like being so far from home made you—were you able to feel like you gained more independence? Or did you already feel that you were pretty independent?

Smith: I already felt that I was pretty independent.

2-00:05:02 Hershey: Of your parents?

Smith: Yeah. Going off to Emporia State Teacher’s College did that for me. Because I did all of that myself, against their better wishes. So I had pretty much established that, and Goshen College was not easy, either. Quite inaccessible, I had to hustle a lot. And they certainly weren’t there day to day to do it for me. University of Illinois, totally on my own. So I basically, you know I was not—I was kind of in a middle class environment in a way, there in Puerto Rico, except when I went out in the country with my family. It was a good feeling though, I mean, obviously my goal was to get out of the country, out of the mainland, and I did it.

2-00:05:47 Hershey: Did it give you a different perspective on the world, because it was different?

Smith: Yes.

Hershey: And you weren't in Kansas...

Smith: Yeah, yeah it did. Just to be in a country where English wasn’t the dominant language, even though I was teaching in English, I knew a lot of—I made a point of trying to get to know some Puerto Ricans.

2-00:06:09 Hershey: What was the political situation with Puerto Rico then? It was already part of the US, wasn’t it?

Smith: Yeah, it was part of the US, and there was this strong anti-US party. I knew a couple of people in that, who were very resentful of the US, but they never— they were always a small minority really, of the people there. And again, I didn’t pay a tremendous amount of attention to the political scene. I was somewhat interested in the indigenous people, and read a little bit about that history. Also, there had been African slaves there, and there was still a little village that you could drive out to where a lot of the descendants lived. Where was I politically? I’d always been left of center, forever. But again, my disability rights awareness was still back there in that I never talked about it much with anybody, and it was just part of the weather. That didn’t happen until much, later. So after Puerto Rico, I completed my, I guess it was sixteen months. And then, I did a bunch of crazy—I did things—it all connected to Lynn. She was going to meet me, and she did not.

2-00:07:56 Hershey: So when did your time in Puerto Rico end? What year?

Smith: Well, I got my master’s in ’66, went to Puerto Rico about ’68, I think it was ’70, 1970—

2-00:08:11 Hershey: That you ended?

Smith: Yes, came back to the United States. Went to the—

2-00:08:14 Hershey: And she was supposed to meet you where?

Smith: She was supposed to meet me at the University of Kentucky, because all we knew how to do was go to school.

2-00:08:22 Hershey: So you were going to do another graduate program?

Smith: I was going to do a graduate program in Spanish. I was going to get a second degree. And she was going to come and do whatever; she was at that time a nurse—a social worker in Vietnam, working with -- during the war, I guess. So she was going to come back and meet me, and then there was this—she didn’t.

2-00:08:49 Hershey: So was she still your only relationship up to that point?

Smith: Mm hm. Nor was I out to one single soul. So when she didn’t show up, at that late in life, it was extremely—I came the closest to having a mental breakdown. I lock stepped ahead, I came home for a couple weeks crazed, but telling no one. Went ahead to the University of Kentucky, knowing no one, and had—the closest I ever came to going nuts. With that amount of devastation with complete isolation, I was getting a little crazy. I was very depressed, but I kept lock step going to school, I did not drop that part. Meanwhile, for example, I’ve never paid that much attention to my hair. My hair is my hair, it’s always been very easy care; and I was never a shopper, still am not. I went to a department store and bought a wig. That was exactly like my real hair. Why? I do not know. Never wore it. But since then, I thought I was buying myself a metaphor of being “wigged out.” [laughter] And one day, I was driving to school, and I actually—just from my apartment that I lived in—I actually thought, those drivers are trying to run me off the road. They deliberately want me to have a wreck. And then I thought, girl, this is a serious thought. You’d better go to the school psychiatrist. And meanwhile at home I was crying all the time, and—

2-00:10:36 Hershey: So were living in a dorm then?

Smith: No, I was living in an apartment. And doing my studies, and I went to the school psychiatrist—I was losing weight, accidentally. I was eating and losing weight at the—eating normally I thought, and losing weight, and I went to the school psychiatrist.

Begin Audiofile 3 Eleanor Smith

3-00:00:03 Hershey: Sorry for the interruption, but you were at the University of Kentucky and you went to the school psychiatrist.

Smith: Yes. I told her a little bit, but did not come out to her, told her I was extremely depressed and she said she thought I would need a year of therapy, and I found this very frightening. I thought that was for crazy people. And then she gave me some pills, I guess they were anti-depressants, and I went home and took them by myself on the weekend, and I flipped out. I did not have to go to a hospital, but I flipped out. And I was really, really in a netherland, and she had happened to give me her phone number and I called her up. I said, “I feel like I am not chairman of my own board.” And she said, “Do you want to go to a hospital?” and I said, “No.” I said, “Should I stop taking these?” and she said, “Yes.” I did, and, it turned out, I went to see her another time—and it turned out that I should have been on anti-anxiety pills. And so she gave me some of those and I was much better. And things were pretty—So that was about three months of extreme angst and kind of craz—not having too much further to go to kind of getting whacked out, but did not quite go to the point of me needing to be hospitalized or anything, and still doing my schoolwork. I then—still no basic disability consciousness, other than coping, which was hard, but you know—

3-00:02:00 Hershey: Yeah. So this was like the early seventies now?

Smith: Mm hm.

3-00:02:05 Hershey: Had you heard anything about that there was like a disability rights movement somewhere, or disabled students’ groups?

Smith: I don’t think so.

3-00:02:12 Hershey: Except for UI, but yeah.

Smith: I mean, there was campus—

3-00:02:17 Hershey: Campus groups, yeah.

Smith: Right, but they were mostly, even the University of Illinois just had some kind of campus—they didn’t have any activities, I didn’t know any other disabled students there. I mean, sorry, University of Kentucky.

3-00:02:30 Hershey: So did your relationship with Lynn end at that point?

Smith: No.

3-00:02:37 Hershey: So she didn’t show up, but did she ever contact you?

Smith: Yeah, eventually she actually came and visited me there.

3-00:02:50 Hershey: Uh huh. Was it during your first year there?

Smith: Mmhm. I was only there one year.

3-00:02:56 Hershey: Did you get a degree?

Smith: I came close. I was all but six hours, so I had a lot of hours. And meanwhile, I wasn’t actually academically enjoying it very much. And meanwhile, the department chair called us all together and said it was a terrible time to become a Spanish teacher, there was a glut on the market. That combined with the fact that I did not wish to read this long reading list in preparation to passing a master’s test; I looked at that and said, “You know what? I really don’t want to do that.” And so I went to the library and started looking for colleges that I could teach at, and I applied to several. And including one that was Methodist, because in my experience, the colleges that were Methodists were Methodist in name only, by some founder, you know, that had no religion, that still didn’t have any particular religion. So, they wrote me a letter of interest, and I went up and saw them in Upland, Indiana, population 900. Something like that, really.

3-00:04:11 Hershey: Really? Interesting.

Smith: So I’m looking at this school that is all ready to offer me a job, and I see that it’s a right-wing Christian school, to my surprise.

3-00:04:27 Hershey: How did you find that out?

Smith: By reading the student newspaper, taking it out of a box and seeing, these people—oh my God! They are right wing! They’re pro-Nixon! But, that’s the way the machine was rolling. Lynn had not made any commitment to be with me, even though we had spent some time together and still liked each other.

By that time, honestly, as much as I loved her, my trust might have been somewhat compromised. So here I was at this college, interviewing, so I went ahead and took the job. Again, not—amazed thinking, how did I end up at this Christian place? But I took the job, because it was the only one offered to me, and I wanted to earn some money and be out of that graduate program. I did not even say goodbye to those people. I fault myself for that, at the graduate program.

3-00:05:36 Hershey: You felt what?

Smith: I fault myself somewhat, didn’t do a good job [of leaving] at all, I just took off. They didn’t know where I was. But I taught at that school, made a couple of friends who I was not out to as a lesbian yet, or as a non-Christian. But not all of the people there were “jumping for Jesus” as the saying goes. There was this little wing of semi-doubtful intellectuals, with semi-doubt. And I knew one of those in particular.

3-00:06:16 Hershey: And what was the name of this college?

Smith: Called Taylor University. So, I proceeded to teach English and got some college teaching. Enjoyed it again, I like teaching. Meanwhile, no disability rights consciousness.

3-00:06:36 Hershey: Did you find it as exhausting as you had found teaching in the public school back in Kansas? Or was it a different pace?

Smith: It was a different pace, I did not find it as exhausting. My very first class, I ran out of things to say and the students had no questions, so I dismissed them. They looked at me, wha?! But after that, I mean the first day, they were just amazed, but I thought, well, I don’t have anything to say and they don’t. After that, though, there was always plenty to say, and I basically liked it, except that I was also becoming more left wing over time. And I was reading things like Deschooling Society, Ivan Illich. At the University of Illinois I had read Norman O. Brown and some other cultural critics who had interested me greatly. And so I was forming a political consciousness. That was the days of Daniel Ellsberg, I was reading his stuff. I was reading on kind of lefty, and I always leaned in that direction, but when I read Deschooling Society, I started to think that college was pretty much a racket, and I still think it is, actually, in many ways that it should be challenged in court as the only means to get certain jobs. So I began to develop that idea there, and this other person and I wrote a paper the second year, we published it to [the entire faculty and a lot of] students that—

3-00:08:33 Hershey: Was this another faculty person?

Smith: She was sort of halfway faculty and half not. She was a graduate who was hired for a year as a resident to run the residence hall, to be the—do you know what I’m saying?

3-00:08:50 Hershey: Like a resident advisor?

Smith: Right, but she was not a student anymore, it was sort of a bridge year for her.

3-00:08:59 Hershey: And what was her name?

Smith: Her name was Joanne.

3-00:09:01 Hershey: And was she just a friend of yours, or did you have some—?

Smith: We were friends.

3-00:09:07 Hershey: Somehow collaborated on this idea.

Smith: Yes, we were friends.

3-00:09:11 Hershey: And what was the gist of the paper?

Smith: The gist of the paper was that a college degree had become too much the arbiter of whether you could get certain jobs or not, and that it was having a bad effect, because it was forcing people into college who didn’t want to go that route at that time, and keeping people from jobs who should be able to demonstrate competence in other ways. And the thing that ticked that over the edge was one day reading the Saturday Review, back before I totally formed that idea while I was a teacher, and reading in the evening an ad in the back of it that said, “ Wanted: waterfront instructor summer camp, college graduates or college students only.” And so, in the middle of my second year I did some—Lynn meanwhile was coming to visit me some—I did something that I think only a young person,would do, which is decide that I was going to stop doing things the regular university way. I was going to give the students any grade they wanted, and stop making them come to class, and this was a pretty rigid school. And I announced to my class—first of all, I had them read the essay and comment on it. I should have saved all those comments, they poured their hearts out in basic agreement, most of them. And one came to me, a young man came to my office crying, or he began to cry, and said he had only come to college to escape the Vietnam War. It really resonated with them, and of course they’d never had—I mean, my plan was completely goofy. A lot of them stopped coming to class, and then when they did come, I should have figured this out in advance, ten would come one day, and a different nine the next day. I couldn’t manage any continuity, I basically could

hardly teach the class. So I had a giant headache every day, and at the end of the class [laughter] they gave themselves whatever grade they wanted in this fairly tough school, almost all of them gave themselves A’s. The dean was so mad.

3-00:11:43 Hershey: I was wondering how long did it take the administration to figure out what you—

Smith: Well, they were furious. In the meantime, I had resigned. I mean it was done from the heart, but it was rather ill-advised. Although some of the students would write little notes about how much they were learning about themselves in this situation, where no one was making them come to school. But mostly, they were just amazed and took advantage of the situation; and gave themselves an A to help their grade point average, and didn’t come to class. Meanwhile I decided that I would go research community, and I went and lived at Koinonia farm.

3-00:12:31 Hershey: Can I back up first and ask you, either at Taylor University or in any of your earlier teaching, did you have any students with disabilities that you could remember?

Smith: Mm-mm. Nary a one. No one blind, no one deaf.

3-00:12:54 Hershey: Did that surprise you, or did you even think about it?

Smith: I didn’t think about it.

3-00:12:59 Hershey: Okay, so you left—how long were you there?

Smith: Two years.

3-00:13:03 Hershey: So you left there in about what year? ’72 or?

Smith: ’72 or ’3, yeah, right in there. I turned thirty at the farm. At the farm that I went to.

3-00:13:19 Hershey: Yeah, so tell me about this farm and the community.

Smith: Well, I had always kind of been drawn to the idea of communal living, but didn’t know any real examples. I had heard about this farm, down in south Georgia that tried to live anti-racist principles, anti-military principles, pro- peace principles, and had been started by this Christian guy.

3-00:13:49 Hershey: What was the name of this place?

Smith: Koinonia, it’s called. It’s still around.

3-00:13:53 Hershey: How do you spell it?

Smith: K-o-i-n-o-n-i-a, it’s Greek for community I think. So, I was bound and determined I wasn’t going to have to go somewhere where I had to play Christian again, or not so much play Christian, as that would be an assumption. Nor did I want to go anywhere where there was a guru of some kind. And so, I knew it had been started by a rather phenomenal guy, named Clarence Jordan, and his wife Florence; who were native southerners and early, early anti-racists, and wanted to go back to his own basic community and have an interracial farm that lived out true gospel principles. He was an agriculture major as well as theologian. He wanted to bring advanced farming methods that would assist poor people in making a better living in farms. So he started that farm in 1942. Meantime, they had just come out with a book about the farm. So I figured, I will read this and see if these would be people that I could get along with. And when I read it, I felt completely satisfied that although he had started the place, he did not wear a heavy mantle of leadership, and that you did not have to be a Christian to participate. So I applied to go down there, and they agreed that I would be a long term volunteer.

3-00:15:38 Hershey: So what did you have to do for your application?

Smith: I don’t remember. I guess say why I wanted to be there.

3-00:15:46 Hershey: But that’s how people—so you went as a volunteer and—

Smith: Right.

3-00:15:51 Hershey: Was that how most people were there?

Smith: No, I mean there was a core of residents, quite a large core, of people who were actually members.

3-00:15:58 Hershey: I see.

Smith: And there might have been, oh, twenty, twenty-five adults and ten children.

3-00:16:07 Hershey: That were residents?

Smith: Yeah.

3-00:16:08 Hershey: And then how many outside volunteers?

Smith: There might be fifteen long term volunteers, and then good numbers of short- term volunteers that would come through for the summer, and stay five or six weeks, maybe. And I was a long-term volunteer, and I worked in the office. And again, hm—disability. My demands were almost nothing. They put a ramp on the house I was going to live in, because otherwise I couldn’t have gotten in it. But oddly, the building where I went to work, which was on the grounds a hundred yards away from the house, had one step up. I would sit outside that step, sometimes in a drizzle, and wait for someone to come and help me in. It didn’t occur to me or anybody who worked there, that this could be fixed with a ramp.

3-00:17:08 Hershey: But yet, you got a ramp built for the house.

Smith: Right, because then it would have been impossible to get in.

3-00:17:14 Hershey: There were, what, like two or stairs?

Smith: Yes.

3-00:17:16 Hershey: Do you remember how you negotiated that? Or did they just—?

Smith: I asked for it in advance. There was no way I could go down there without them knowing I had a disability, because I had to live somewhere that I knew chances were 19 to 1 would not have access. So, they were cool with my having a disability, but, again, my sister noticed this. They would have newsletters that would come out monthly, and it would show all kinds of people. She said, “Your picture was never in there once.” And I really realized that. There was underlying, there was zero disability consciousness in any kind of political sense. So, I guess it would have been assumed, without any talk or even thinking, that I wouldn’t want to be in the newsletter, because I was so crippled, or they would they wouldn’t want to have me, because it would give the farm a bad name. But I got along well with my little household. I came out as a lesbian to them, because I realized that whether or not I was connected to Lynn, I was in fact a lesbian.

3-00:18:35 Hershey: Were you the only disabled person down there?

Smith: Absolutely.

3-00:18:38 Hershey: And were you the only lesbian?

Smith: Mmhm. And I realized that, you know, I couldn’t really be there as a lesbian, because although they wouldn’t have thrown stones at me, they would have certainly not given me any encouragement. And some of them would have felt that it was not God’s best plan. Although the people I came out to were cool with it. It was my little household. And out of my little household, one of those people was a twenty year old named Laurie Fuchs, who went on to become a lesbian herself and founded Ladyslipper Music.

3-00:19:21 Hershey: Oh wow!

Smith: Uh huh. It was very difficult for me to come out. They say—I came out to Laurie and Ebbie—and they say I was looking at the wall, I positioned myself to look at the wall, away from them. But they were fine with it. So I completed my months there. You know, disability stuff comes constantly, but you just don’t talk about it. No talk about it. Laurie said to me when I moved in, and she was nineteen, I was twenty nine, we’re at the sink. She’s saying, “You know you’re going to have to do your share of the work,” or something like that. I said, “Well yes, I will.” But I mean how incredibly insulting! To assume that, you know, I wouldn’t. And we worked beautifully together, all of us. But she would be embarrassed if I ever reminded her she said that. So in that sense, it was a disability statement with no talk around it.

One time, they planned a hike, and they went on a hike. And they didn’t take me, because I couldn’t hike, but they didn’t talk about it. But I wasn’t hurt. And one of them, Joanne, still my good friend today, who’s also a lesbian by now but wasn’t then, bought me a ten-inch paper doll of Little Lulu, because I liked Little Lulu, and her clothes, and gave it to me because I couldn’t go on the hike, which I thought was the sweetest thing in the world. It was her quiet acknowledgment that they were doing something I couldn’t do. And a few months later, they actually got together and took me on a hike. On a stretcher like you carry wounded football players, two miles down the Appalachian Trail. And then tenting, without a wheelchair. It was phenomenal. The two guys carried me on this football stretcher, and the two women packed gear for five people, between the two of them. It was one of the funnest things I’ve ever done. And very hard for me to accept emotionally.

3-00:21:50 Hershey: So they planned it all out and then offered it to you?

Smith: Uh huh. It was wonderful.

3-00:21:57 Hershey: And at what point were you able to accept it? Like after it or during it?

Smith: I had sort of a crisis. Never having had any therapy really. It was agreed that they would go hiking during the day, and I would just stay in camp, which I loved the idea of, alone in camp, no wheelchair.

3-00:22:23 Hershey: After you got out there, through the two miles down.

Smith: Right, yeah. They went off on a long day, and I was tending the fire, cooking my coffee while sitting on the ground. Some of our dishes had gotten in the creek, and I got down the bank of the creek, and swam after the dishes, and brought them back. Dug a little hole, pooped in the little hole, covered it with dirt, washed, made my lunch; I was having a wonderful time. And I laid down, and I had this huge feeling of awfulness, that was—

3-00:22:59 Hershey: Awfulness?

Smith: Awfulness. It was so intense, that I couldn’t put one thought on the other, and the trees were just swirling with awfulness. I felt awful, awful, sick, horrible—not physically really, mentally, horrible. I sank down, down, down. After having been happy, I sank down. [sigh] Without basically any one thought you could put on top of another, it was just a feeling. And then slowly, I kind of came back up. And I felt good, and the world looked fine and good. And I realized, that I had had a feeling of not being worth all that trouble of being carried in, without knowing that I had that feeling. And then that feeling rushed over me so strongly it didn’t even have words. And I kind of came up out of it, and, I was fine from then on. I couldn’t have begun to say it to them, nor could they have begun to hear it. It was all unarticulated.

3-00:24:29 Hershey: So that’s interesting, what do you think was their—attitude, did they do it in a spirit of community, like, “We really do want to include Eleanor?”

Smith: Uh huh.

3-00:24:42 Hershey: It wasn’t sort of like a charity thing?

Smith: It didn’t feel that way. I knew these people really well. They had felt free to go off on a hike without me. Then I think they got together and said, “Gosh, wouldn’t it be fun to see if we could carry her in? I bet she’d love it.” Because they knew I was adventurous. I think that’s where they were coming from. They did it another time later, down a different trail. But the way I really found out I couldn’t talk about disability, was a couple years later, when I had left the farm, but they had a little reunion kind of thing with another community. There were about ten people who knew each other pretty well. This was two or three years later, we were off on our other lives, but we were at a summer house together. And they were planning some activities, and I

didn’t know those people as well, and they were planning to kayak down a river. Or something. Something I obviously couldn’t do. Nor did I care, you know, just give me somewhere with my book, but some of the other people didn’t want to do it either. So the kayakers went off, and I was left with people I knew a little bit well but not really, they hadn’t lived on the farm with me. One was a psychiatric nurse and another was a regular nurse, young people, and there was me.

And we were sitting by a creek, and I said something like, “Sometimes I wonder what people are thinking when I can’t do something physically that they’re planning to do.” I was met with utter and complete silence. Not a word was said. And these were people—one a nurse and one a psychiatric nurse, which is why I felt free to bring up the subject. So, a long silence went by, and somebody started a new topic, and I thought, this is why I have never talked about disability. People can’t talk about it. People can talk about how we’re going to get over this bump, or how we’re going to fix your hand controls, but apparently, my intuition that most people were utterly unable and unwilling to talk about the interactions that go on around disability was—That set me back a few years, you may be sure. That silence.

3-00:27:46 Hershey: So, when you were living at Koin—?

Smith: Koinonia.

3-00:27:52 Hershey: Koinonia. Were able to have any conversations with the people there about it, after you got to know them so well?

Smith: Mm-mm. [No.]

3-00:27:59 Hershey: Huh. So felt really close with them but you really still couldn’t talk about that.

Smith: Mm mm. Mm mm. [No.]

3-00:28:07 Hershey: How long were you there, by the way?

Smith: I think I was there—I think Puerto Rico was fourteen months and that one was sixteen months. And then, I left because I had completed my service, and I was the victim of disability discrimination at one point there. At Koinonia.

3-00:28:35 Hershey: Do you want to say something about it?

Smith: Well, I could, yeah.

3-00:28:39 Hershey: If you want to.

Smith: I do, it’s just there’s so many stories, I feel like I’m ninety-nine years old.

3-00:28:45 Hershey: [laughter]

Smith: But, there was one guy there, at Koinonia, who in many ways wasn’t very nice. Most of the people there were very good-hearted; he was trying to be, but he wasn’t. He was a former executive at IBM, who’d kind of cast it all aside and taken on the life of poverty, but carried some of it with him. And I had to be his secretary, and he was rather dictatorial, and I did what he said, but there was a little tension there. Me being—not liking that kind of man very well, and—we didn’t have a big fight, but he was also—there was no one boss, but there was always a coordinator, and each year the coordinator would be chosen and basically begged to do it. Far from somebody wanting to be the head honcho, you had to beg somebody, “Please be the head honcho!” And he had been there several years, and people begged him. He was extremely reluctant, but he finally bowed. And you could then learn why he was reluctant, because in that position, it brought out everything that he had tried to run away from, tried to leave. Kind of a mean streak, or whatever else. And he was the leader when I—

So I had finished my actual time, and I wanted to stay two more months until another opportunity, three more months then another opportunity I had arranged was going to take place; and he didn’t want me to. And the board was meeting, [people from outside who just came once a year or so] and he essentially went to the board and told them that we don’t want—he didn’t say it in so many words, but there’s this crippled person that still wants to stay and we can’t be a place where crippled people stay. And they kind of went with that, then my request to stay a couple more months should not be granted. It had been granted in many other situations. My household, getting wind of this, was ready to run to my defense, but didn’t quite know how. They were pretty young, they were all young and they were not all full members. I was very heartened that they wanted to do that, but we all felt quite powerless actually, in the face of this board and this manager. And so, I went ahead and left. But I know that he framed it in terms of, we don’t want to be seen as a place where the incompetent of the world come and hang out.

3-00:31:37 Hershey: How did you find that out?

Smith: Somebody mentioned it to me.

3-00:31:40 Hershey: From the board?

Smith: Yeah, somebody mentioned it to me that he had cast it in that light, not the extreme that I’m wording it as, but cast it all in that light. So—I left and I went to another community. I had gotten a scholarship to be a free student at a Transactional Analysis Gestalt institute. They were offering scholarships to— people who were not trained therapists at all. It was me and an American Indian and some other person, I forget who, who were kind of the non- professionals and the un-couch broken, as you might say. And we were granted a free chance to see and participate in all this, it was really enlightening.

3-00:32:45 Hershey: Can I back up just for a second?

Smith: Mm hm.

Hershey: Koinonia? What were you actually doing there?

Smith: I was working in the office.

3-00:32:53 Hershey: And what did the community do beside, so they—?

Smith: They farmed, and they made money off the farming. They had a lot of crops and fourteen hundred acres. And they ran a little school, which was a neat little pre-school. They built houses for poor people; it was really the beginning of what became Habitat for Humanity.

3-00:33:15 Hershey: Did they build those houses on their own land, or out in the communities, or what?

Smith: [Mostly] on their own land, because they had a lot of land, and they had a little village. And they started a new little village where poor people had their first decent houses that they owned instead of rented. It worked fairly well, and the guy who lived there who did that broke off and started Habitat for Humanity, on the same principle.

3-00:33:42 Hershey: Who was that?

Smith: Millard Fuller.

3-00:33:44 Hershey: And so did that—it sounds like another strong, as you say, community and also social justice—

Smith: Absolutely. They would go off and sometimes march against the death penalty. They had actually been highly persecuted as an integrated farm, in the early days prior to my being there. They had started in 1942 and been just

mildly controversial, actually sitting down to dinner interracially, but nobody reacted in the [surrounding] community. In 1954 when the civil rights laws started coming down, rage was directed at the community, serious rage. Surrounded by the Klan shot through the windows of a residence. A young girl, who was the daughter of Clarence Jordan, was standing in her bedroom, she was not shot; and her outline showed on the shade at night, they shot through the window and tried to kill her. The bullet missed her. They lived in—they were terrorized, and they still kept going, but the thing that almost shut them down —again this was prior to my residence —was that there was a huge boycott. The surrounding community would neither buy nor sell. Wouldn’t buy their produce, would not sell them gasoline, would not sell them—bombed their roadside stands. They were almost not making it, clearly.

But word of that got out to abroad, bigger America, and was such blatant anti- racist, I mean racist stuff, and there were contributors who started sending money, and then someone suggested, “They won’t buy your products, so why don’t you start a factory that you ship things out?” And they started a fruitcake and candy factory, and that’s how they stayed economically alive and which they still have to this day. So I worked in the office, writing thank-you letters to donors, tabulating what people bought, so that they would know how many of what was selling well, that sort of thing. Office work, that I did nine to five, five days a week.

3-00:36:16 Hershey: And what was the atmosphere like by then, was it as much under seige or—?

Smith: It was nowhere near—

3-00:36:22 Hershey: It was a lot more relaxed then?

Smith: Much more relaxed, but in most cases not cordial. For instance, sometimes when visitors would come down to Koinonia and there was this huge stream, sometimes they would be told the opposite way to go, and when they finally got to the farm they would say that people told them to turn west instead of east. That still was still going on, but nothing like shooting and boycotting.

3-00:36:51 Hershey: Did you join in any of the activist stuff they did, like the marches?

Smith: Most no, no I didn’t, often it would involve some travelling that would have been difficult for me. Not too many—I did some some local stuff, like literacy stuff, but I didn’t do any political action. Meanwhile, I was reading radical papers, because every kind of newspaper came through there, they were very open minded people. And I was reading The Great Speckled Bird out of Atlanta, Georgia.

3-00:37:31 Hershey: What was that?

Smith: It was an alternative [magazine] that was great. A weekly, and it was a very alternative magazine by the hippies and political activists of the early seventies in Georgia. And there I read about the Atlanta Lesbian Feminist Alliance, and the Red Dyke Theater. There were pictures of them putting on their plays, and yeoh! And so, on my brief sojourn to North Carolina, where I took that radical—TA [Transactional Analysis] Gestalt school, worked as a secretary to support myself half time, and lived in a sister community of Koinonia, an urban left-wing Christian community.

3-00:38:24 Hershey: And what was it called?

Smith: Suruban.

Hershey: Suru?

Smith: Suruban, S-u-r-u-b-a-n, I’m not sure why.

3-00:38:32 Hershey: What year was this about?

Smith: ’74. I stayed up there nine months, lived there.

3-00:38:41 Hershey: And what did you do there?

Smith: I lived in a household of five people, worked as a secretary half-time, and went to the TA Gestalt school.

3-00:38:53 Hershey: Did you work as a secretary for them or somewhere else?

Smith: No. I just went out and found a job that needed a half-time secretary, I was not a very good one, but they didn’t have much business. It worked out. Again I was not out to those people, as—and it was a pretty scary time in my life, I had left the farm not knowing I was going to be able to live in that community.

3-00:39:20 Hershey: Not knowing why? Why didn’t you know you’d be able to live there?

Smith: Because I hadn’t gone to them and asked. I was just going to go visit them on the way up with Laurie Fuchs to visit her family over Christmas, well in their case, she was Jewish, so it wasn’t Christmas. I headed up to New York, having been kind of kicked out of Koinonia. Not in the way you think of being kicked out, but as I mentioned about that board action and stuff. And on the

way we went—it was my plan to ask at Suruban if I could live there temporarily, but I felt I needed to do it in person. And so, when Laurie and I went up there, we stayed a couple of days, and I said, “Could I live here for a while?” And you know, where will we put her? Well, Sally, who I still know, lived there, and she had a very large bedroom. And she said, “Oh it’s raining! Let’s let her live here!” [laughter] She’s funny. And they put a ramp on that house, and I lived there.

3-00:40:30 Hershey: So they just quickly built a ramp?

Smith: Mm hm. By the time I got back from Christmas vacation, holiday vacation, up in New York, they were ready for me. On the way back, Laurie didn’t come back with me, I slept in the car in Baltimore, in my sleeping bag. I really felt like a vagabond, and I also was worried about money. So I remember finding a place to sleep in Baltimore, and crawling over the back seat and sliding into my sleeping bag, and spending the night.

3-00:41:01 Hershey: So I’m a little confused, when you stayed at Suruban, that was prior to the TA—?

Smith: No, it was during. The TA was happening in a nearby town.

3-00:41:12 Hershey: Okay, so you knew all along that you were going to go to the TA school, but you didn’t know where you would live?

Smith: Right, and the TA school wasn’t starting for a couple of months.

3-00:41:21 Hershey: Okay, so how long did you live at Suruban?

Smith: Nine months. And the TA was only—

3-00:41:24 Hershey: So had asked just to live there for a couple of months, is that—?

Smith: Yes. I knew that I needed to live there in the months leading up to the TA Gestalt school, and then during the TA Gestalt School.

3-00:41:39 Hershey: I see.

Smith: And then after that was an open book.

3-00:41:42 Hershey: How was Suruban different from Koinonia? Was it a similar community structure, or different attitude?

Smith: Same attitude, more fluid—

3-00:41:56 Hershey: Accept you, but don’t talk about it?

Smith: Oh, disability-wise?

3-00:42:00 Hershey: Yeah.

Smith: Yeah, yeah. I could tell funny stories about it, but I couldn’t really. Because that event that took place afterwards, with the great silence that I told you about, was a year or two after that yet. And one of the people [at Suruban] was my roommate Sally, who [a couple years later] greeted [me with silence in my effort to talk about other people’s emotions about disability]. [When we lived together, in the household] we had told little funny stories, but we hadn’t really said anything like that. And so, it was also silent about that. There was a woman in our household with lupus, and we would do some accomodation for her lupus. But that’s different from talking about interactions and the theory, or anything like that. We weren’t even close to that, I wasn’t even thinking about theory, I was just having, you know, emotions from the first moment I had polio, and realized how it weirded people out.

3-00:43:03 Hershey: So what made you want to go to the TA school?

Smith: Because I really—they had come down to Koinonia, and told us for one weekend what they do. Because they were into social change as well. They were into anti-racist things. And while they were down there, I realized that I wanted to deal with some of my emotional stuff. I knew they were going to have that school and they were allowing scholarships for non-professionals, and that’s when I applied for that and got accepted. So my motivation was that they were politically, not radical, but certainly strongly anti-racist, and they were trying to tie therapy to social change, which I didn’t know anyone else doing that. And I wanted to do therapy, and I dealt with some disability stuff during that time.

3-00:44:00 Hershey: Did you?

Smith: Uh huh.

3-00:44:01 Hershey: And were they open to it? Were they responsive?

Smith: They were good therapists to it. But one thing that happened to me there, you know you’re all opened up, and you’re surrounded by these thirty people, and you’ve all been doing therapy and seeing each others’ deepest traumas, and listening to each other cry, and watching each other act things out in a Gestalt

sort of way, and be their parent, and be them, and wow! It was hot! And all day everyday, for the summer. I’d stopped my secretary job. And I did this one piece on getting polio or something, and when we were going around the circle, later in the day we were all supposed to go around the circle and talk to each other about something, and I got to this one guy, and he said to me, something like this, “You might want to be careful in the rest of your life, in what you let happen to yourself.” Implying that my polio had occurred because of—

3-00:45:15 Hershey: Because you let it?

Smith: I let it. Man. I was freaked, I went into another room and cried and cried. And then I went to the director and told him. And he said, “That is unacceptable.” And when the group reconvened after noon hour, he brought it up. And he said—he bawled that guy out.

3-00:45:42 Hershey: Wow, in front of everybody.

Smith: Yeah, he didn’t like, dress him down in a mean way, but he said, “Your analysis is not like how we think of things happening.” I think he might have even compared it to racism, I don’t know, but I felt very protected.

Begin Audiofile 4 Eleanor Smith

4-00:00:05 Hershey: Okay, so they—the Transactional Analysis approach, that guy that made those remarks to you was definitely not within that mindset, right?

Smith: That was really important for me to hear, and it also felt that summer that I had talked about disability, even if not interactionally, at least in front of people. And that I had been supported by the director. So that was good.

4-00:00:42 Hershey: So he actually compared it to racism, the way the guy—

Smith: I think he may have. Whatever he said, I felt that he was not just saying to that guy, “That was insensitive,” but was also saying, “That is not how we frame what happens to people.” And I don’t know if he compared it to racism, I think I did. If not then, I certainly did later.

4-00:01:10 Hershey: So was it during that course that you really began talking more about disability to people?

Smith: No, I still didn’t. But I did decide to move forward on my lesbian stuff, and I still wasn’t out to my own household, because—

4-00:01:37 Hershey: Your household.

Smith: My new household, up there in Durham. I wasn’t out as a lesbian, although I was not—

4-00:01:44 Hershey: Durham—wait, I thought the place was in New York.

Smith: No, I just visited New York temporarily.

4-00:01:51 Hershey: Okay, so it was in Durham, North Carolina?

Smith: Durham, North Carolina, sorry.

4-00:01:53 Hershey: That’s where Suruban was, and the Transactional Analysis—?

Smith: Yes, exactly. I was just up in New York for a week with Laurie, when she was visiting her parents, that was a transition. So I decidied to find my first lesbians that weren’t Lynn, and I asked around if there were any lesbian groups, and found out that there were.

4-00:02:18 Hershey: In Durham?

Smith: Yes, in Durham; either Durham or Chapel Hill—and I found out their schedule and I went to one of their meetings. Again, always hustling my way with access. I knew it wouldn’t be accessible, I just showed up and sat at the bottom of the stairs. And a couple of women helped me in, and I went in and I looked around, and they didn’t have horns, and they didn’t have long, flashing tails, and they were, you know, how we all—well, I don’t know about you, I mean back then we needed to find out that not all lesbians were either bar drunks or wicked women of the night. So that was good.

4-00:03:06 Hershey: So you started attending meetings?

Smith: I was just about ready to move, and that’s when I decided to move to Atlanta. I wrote a letter to the Atlanta Feminist Alliance, and they wrote back a great letter; a woman there named Lorraine wrote back, and—

4-00:03:25 Hershey: What did you ask in your letter, or say?

Smith: I don’t know what I said. I just said I thought I wanted to move to Atlanta, and—

4-00:03:35 Hershey: And what was their great response?

Smith: Just all kinds of welcome—it was long, and hand written, and it was more the tone, “Yes, we really love when new people come, and here’s what we do.” Again, another letter I should have saved.

4-00:03:47 Hershey: Yeah, did you say anything about disability, or did they?

Smith: I can’t remember. I would be surprised if I did not. I believe at that point— well even, yeah, I think I probably said, “I don’t know if your place is accessible, I’m just guessing.” Eventually they put a ramp on for me there too, at the ALFA [Atlanta Lesbian Feminist Alliance] house. But before that, for months, I hustled my way in, by waiting at the bottom of the stairs. Once, I was late for something, and I even had to throw pebbles at the window screen, for ten minutes before—

4-00:04:21 Hershey: And they would just carry you up?

Smith: Uh huh. So I moved to Atlanta, and started hanging out a lot with the lesbian feminists. That’s the end of today’s chapter.

4-00:04:35 Hershey: Okay.

Smith: My disability rights consciousness came within a couple years of that, but it was not there yet.

4-00:04:42 Hershey: Okay, we’ll continue the conversation tomorrow or sometime.

Smith: Okay.

Interview # 2 October 6, 2008

Begin Audiofile 5 Eleanor Smith

5-00:00:06 Hershey: So, this is Laura Hershey again, and Eleanor Smith, and we are still in my home in Englewood, Colorado. Today is Monday, October 6, 2008. And we’re continuing our interview. So Eleanor, yesterday when we left off, you were—it was 1974 and you were in the process of moving to Atlanta.

Smith: Right.

5-00:00:40 Hershey: And what stands out in your mind about your move to Atlanta and your first few years there?

Smith: What stands out there is being fortunate to find an apartment with basic access.

5-00:00:58 Hershey: And how did you do that, were you searching ahead, or you just got lucky?

Smith: I got lucky, because I didn’t live down there yet. I was up in Indiana with my parents briefly, interim-wise, and a friend of mine was visiting Atlanta and saw that apartment for rent sign and called me up, and said, “There’s an apartment for rent, and it looks like it doesn’t have a step.” And so she called me up in Indiana, I called the landlord, and asked him if it was available, he said “Yes.” I did not disclose that I had a disability. I jumped in my car, and drove down to Atlanta, pulled in their driveway, honked, they came out, and I rented the apartment.

5-00:01:48 Hershey: How long did it take you to drive down there?

Smith: Well it was a long way, I stayed in a motel on the way down, one night.

5-00:01:57 Hershey: Was the apartment reasonably accessible?

Smith: Well, the main thing was I could get in without a step. The bathroom door was not accessible, and I had to—I was pretty strong then, and I parked in the doorway of the bathroom, scooted across my clothing trunk, and got on the commode that way. Could not take a bath yet, because I couldn’t get from the commode to the tub, and so I just would wash up at the sink, and then I got connected with voc rehab [vocational rehabilitation] really fast, and they sent somebody to put the door on some hinges that let me get to the commode.

And then I put the trunk between the commode and the tub, and then for the next two or three years, I jumped on the trunk and then into the tub.

5-00:02:54 Hershey: And did you have a job there in Atlanta?

Smith: No, I came cold, really. I wanted to be there because it was fairly near that communal farm I had lived on, namely four hours away. And it was a city that I could be—I didn’t have to deal with snow on my own, and between that and the lesbians, who I didn’t know personally, but knew there was this organization, that’s what drew me. I went job hunting, found a temporary job at a library, found a permanent job with food stamps, as a food stamps worker, and it did not match up with my complete inability to fill out forms well. It wasn’t computerized, and I kept missing little boxes, and I was under a lot of stress, I would bring stuff home; because I didn’t seem to have the—I did fine with the clients, but I didn’t have the eye-hand coordination to—I would always have these little arithmatic errors. I was coming pretty close to frustrating my supervisor, who thought because my record showed I had taught school, that I must be just not trying. In fact I was petrified at finding this laguna of inability. And I was working hard, and in the meantime then I talked to somebody else in the system, and I was able to get a different job in vocational rehab. So I switched over to voc rehab—

5-00:04:37 Hershey: And what did you do there?

Smith: I was a case worker, and there of course, I was surrounded by quite a few people with disabilities. All the people who were clients had disabilities, and some of the co-workers, and so—

5-00:04:55 Hershey: And how long did you work there?

Smith: Again, I’m very poor at remembering exact years, but I’d say four or five years.

5-00:05:05 Hershey: And you didn’t have the same problems there with the forms ?

Smith: No, because food stamps required you to fill out numerous forms per day, with math in them.

5-00:05:20 Hershey: Income and expenses and all that?

Smith: Yes, and if you made one little mistake, it screwed up everything. Well, I could do the forms, I can do an ordinary form, you know, but it was those forms I wasn’t able to do very well. I was getting better towards the end, but then I switched over to voc rehab, worked there for a good number of years—

5-00:05:50 Hershey: Were you also at that time being active with that lesbian feminist group?

Smith: Yes, I became very active with them almost right away.

5-00:05:57 Hershey: And what was the name of that group again?

Smith: The Atlanta Lesbian Feminist Alliance. I worked on the newsletter, I hung out with people, and of course, speaking of lack of access, I had no friends or relatives in the town, ‘til I started making some. I remember one of the first parties I was invited to, I was pretty excited, and she had, you know I knew she had a lot of steps, she told me she did. So we agreed that I would phone her up just before leaving. You know, there weren’t cell phones or anything like that, so I was to telephone her just before leaving, and then she would have people looking out for me. So I’m new in town, I put on my party clothing, I get in my car—I phone her up, I get in my car, I drive over there, and somehow she got distracted and never came out, and I waited for some more people to come and they didn’t. I drove sadly home, I was just—took off my party clothes, but—

5-00:06:59 Hershey: And was that a lesbian party?

Smith: Yeah, it was, uh huh. And then she was apologetic, the next—you know, later, but it just wasn’t in her radar.

5-00:07:10 Hershey: Was then you started thinking about visitability, or was that much later?

Smith: Well, no, I mean I’d had all those really hard experiences since being a little kid. Not being able to go next door, [visiting] in a house where I couldn’t get in the bathroom, being sixteen in my new light green, wool dress, at someone’s house at a little party and—I usually didn’t have to go to the bathroom, because most people who don’t have a catheter or something, and who do go out socially, a lot of people who can’t stand up just develop this ability to not pee for hours on end, many hours. And I had that ability, but at this one party I just had to go, and I remember going back there and seeing the narrow door, all the narrow doors, I mean most, almost every bathroom had a narrow door, and still does. So, I just had to go, and I got down on the floor, scooted throught the doorway; just feeling completely ashamed, age sixteen, praying that nobody would come back and see me, with my nice little high heels coming off as I tried to drag myself in. You know, it was—a lot of times people with disabilities don’t talk about the nitty gritty like that, because you don’t want to—it just doesn’t work. But it happens, and in a way we’re protecting non-disabled people from the gritty reality of our lives, in order to protect ourselves from their perceived upsetness, and therefore, social isolation of us. You know exactly what I’m talking about.

Hershey: Yep, yep.

Smith: But, the untold story of the misery, that narrow bathroom doors impinges on people’s lives, at that time I didn’t have consciousness, I just had horror at my social situation there, and nobody did come back there while I was gripping the commode and pulling myself up. But you multiply that times hundreds of times, and you have—the stress that it puts on people who are willing to go out in the social world, and you clearly see the reasons why many, many people think, I’m really not going to go out. Those early experiences, which, at the time I did not think, this door could be different, I really didn’t. I did not think, this door could be wider. I just thought—

5-00:10:08 Hershey: When you were sixteen you didn’t think that?

Smith: I didn’t think it for many years. And in fact—

5-00:10:15 Hershey: And I’m sorry, where was that party when you were sixteen?

Smith: I guess that was before—that was back in the little town of Eureka, Illinois.

5-00:10:23 Hershey: Just a friend’s house?

Smith: It was a little church gathering at a person’s house, another teenager’s house.

5-00:10:30 Hershey: Okay. Can we push stop for a second?

Begin Audiofile 6 Eleanor Smith

6-00:00:06 Hershey: Okay, sorry for the interruption but—So you were talking about one of the parties that you went to in Atlanta, and you weren’t able to get in, because of all the stairs. Do you think you started thinking about access around that time as something other than the weather? Like it was something that might actually be able to be changed?

Smith: No, I did not yet. So that’s just, you know, interesting to me, just how long it took for me to have that concept, and in fact, it was while I was working at voc rehab, and I even, for example, had clients in wheelchairs, who had no ramp on their own house. I was aware of that, and we would work on trying to get one, and they had lived for years without a ramp on their own house, wheelchair users. So, you know, I had lived a lot of the fallout for decades, and then I saw the fallout on other lives. But one day the staff, some of the staff members were invited to go over to Emory Rehab Center, and listen to some architect speak. So in this room were, maybe thirty employees from the rehab center and from around; and this architect from Georgia Tech was there,

an able-bodied guy, young man, and of all the stuff he was telling us, I remember that he said something like, “Your disability is caused by the environment. Your disability in and of itself is not a disability, the disablement is created by the inaccessible environment.”

6-00:02:00 Hershey: Was that the first time you had heard that concept?

Smith: It was absolutely the first time, and I felt—almost physically dizzy. My mind was reeling, and I also felt—I could feel my heart pounding. I felt a little bit frightened, and I realized later that I probably felt frightened because it was such a world changing concept, and if this were the case, then it would certainly be grounds for a lot of anger, and a lot of work, and really a whole changed world view. I was blown away by that.

6-00:02:58 Hershey: Do you remember what year that was? Or do you remember the architect’s name?

Smith: I do not know that architect’s name, I’m not even sure he’s from Georgia Tech, but I think he was. I’d love to know who it was. I took no notes or anything like that, I just remember I had never heard that concept put forth. And, you know, you would think that I might notice on my own that a door could be wider, when you look at the narrow door and you see empty wall beside it. But I think it’s fairly threatening to, to start thinking that things could be different, and that things are occurring because of someone else’s decisions. Things that could be different. It’s fairly threatening, you know, that there are reasons why people don’t have certain insights. And certainly another reason is just that you think, that’s the way the world is. But when I heard him say that, it was pretty much a world changing—internal world changing thing, but there wasn’t very much external yet, for many years. I was at that time seeing a counselor, and just you know, about life in general. And of course I was involved in that Lesbian Feminist Alliance, and there’s a lot of feminist things going on, there was an effort to pass the Equal Rights Amendment that failed nationally, and I’d met a lot of people.

6-00:04:37 Hershey: So were you involved in women’s rights activism?

Smith: Yes, I was working on the ERA [Equal Rights Amendment] some, in terms of helping with mailings and so on. And I said to my counselor, “You know, I’d like to—We’re doing this women’s consciousness—raising groups, and lesbian support groups, and people talking in little groups. I think that would be good to try to have a disability support group.” And so, she thought that sounded like a good idea. I put a little ad in a newspaper, an alternative weekly. I think that I got either no responses or one that didn’t follow through, but the thing was, this set me back a couple of years too—I went to my two favorite disabled co-workers, a woman who played with me on the women’s

wheelchair basketball team, and had helped me start it, who had polio, and this blind guy, very cool guy named Scott; both of whom I liked a lot, and as co-workers we hung out on breaks and stuff. These were two people that had—Scott had been born with his disability, and Shelley had had her disability very, young, like two years old. So we were similar, having been raised from early childhood, having you know, gone to college, working there. So I went to each of them seperately and said, “What would you think of being in a disability support group, where we just got together and talked about out lives?” And both of them had the same reaction; looking at me like, I had suggested a knitting club or something. They both said, “Why? What would we talk about?”

6-00:06:35 Hershey: Did you just in, normal conversations, like at breaks, did you ever talk about things related to disability?

Smith: Well, we talked about our clients, and we would talk all the time about disability, I mean not all the time, but I mean Scott might say something like, he was trying to cross the street and xyz happened.Or I might say, “Oh guess what, I found this great wheelchair repair person.” That is really different than talking about our lives in the way that women were talking about their lives. So we had that chat going on, and even talking about something really kind of bad that might happen, like somebody’s hand controlled car breaking down at the side of the road, and you know, fairly severe things, but just in a different category, not in a consciousness raising way, and when the possibility of a consciousness raising group having to do with disability was mentioned, it just did not compute. And my response to myself was, because I was not aware of any broader disability rights action at all, my response to myself was, that I thought something must be kind of wrong with me, really.That I had this weird need, and nobody else seemed to have this quote “problem,” so I sort of just totally—I didn’t feel bad about myself, but I felt like I was off base, I was wrong about this, there was really not any real reason to do this.

6-00:08:19 Hershey: Meanwhile were you part of a feminist consciousness raising group or lesbian group?

Smith: Yeah.

6-00:08:28 Hershey: Like one of the kind of smaller groups where people talk about—?

Smith: Yeah, we—

6-00:08:31 Hershey: And were you ever, did you ever bring up disability issues there?

Smith: Uh uh, no, no, we would talk about the ramp, and they made the ramp; which is great, so great, that they got together and made a ramp, and I cut the ribbon on it, but it’s still not the same, and—

6-00:08:51 Hershey: So you didn’t feel able to bring up any of your personal issues?

Smith: No, no mostly I would minimize those, in order to get dates and—[laughter] I had developed some close friendships—

6-00:09:08 Hershey: And were you dating a lot or just—?

Smith: No, not very much, but I did start having some relationships with people.

6-00:09:21 Hershey: And how did you feel like your disability issues were interacting with that, was that an issue, or did you just kind of set that aside?

Smith: Speaking very personally, as we are kind of doing, but this is even more personal; when I would make love with Lynn all those years, I would make love to her, and be completely satisfied, and I would never have her make love to me, ever. It didn’t even occur to me, and as a femme it didn’t so much occur to her either, looking back that would have made her even more of a lesbian, right? But we weren’t seeing it that way, and I truly did love her, and she loved me, but we did not do that. And then the first person that I went to bed with in Atlanta, I had told her that history, without any insight that it could have anything to do with disability. We might have seen it more in terms of butch/femme things, or whatever, it was just a fact. And I’m telling you, when she touched me, I just went off like the Fourth of July. And so she should get a little statuette in the pantheon of my—[chuckle] people in my life. And ever after that, I really enjoyed, you know, being touched sexually. It’s just that Lynn and I hadn’t ever tried it, we kind of mutually agreed it wouldn’t happen. Then in terms of my disability consciousness, I remember being in my office on a break, reading the newspaper, while still working at that rehab center. And, not nearly on page one, on one of the inner pages in a small article, there was an article about the people acting up and sitting in to try to force Califano to sign the regulations for Section 504.

6-00:11:54 Hershey: So that was—1978? [Correction: It happened in 1977.]

Smith: Yep, it must have been ’78.

6-00:12:01 Hershey: Was the article about the people in California?

Smith: Yes.

6-00:12:04 Hershey: Or all across—?

Smith: I think it was about the people in California and their long, long sit in; how they were staying overnight. I just, I was so thrilled, I was thrilled. And my whole mind and body said, “At last, at last.” I was knocked out, and just grinning ear to ear. I still remember it; I don’t know that there was anybody really to share it there who I thought would have my level of thrill, but I didn’t need for them to, because this was happening.

6-00:12:46 Hershey: Uh huh. So that was the first time you had really heard about any disability rights activism?

Smith: Yeah. I probably had heard about passing of 504. I’d probably read somewhere, in fact I know I was aware of that, that disability rights workers of a certain type, of a more law oriented, office oriented type, had done a lot of things. I was vaguely aware of that, and I was glad of it, but it didn’t thrill me to my toes, like those people taking that power. And then of course, when he did go ahead and sign the regs, that was ever so terrific, when it was a successful thing. So the fact that that made the news, I would never have seen it, if it hadn’t been—

6-00:13:45 Hershey: It was just like a wire service story in the paper?

Smith: Mm hm, yeah. Wire service story, not very many inches on an interior page. But it was fantastic. So I was then ready to rumble, but there really wasn’t anybody to rumble with. I got word of somebody who had assisted with passing 504, who lived in Atlanta, and I called him up and said, “I’m ready to ally with you in anything that you might want to do.”

6-00:14:24 Hershey: And who was that?

Smith: His name was Jim Cherry. He did not turn out to be the person who I would move forward with. Really, that’s when Mark came to town.

6-00:14:42 Hershey: Mark Johnson?

Smith: Right. Many years later, I had done many things since then.

6-00:14:51 Hershey: So, after you saw that article, after you heard this architect talk about the disablement of the environment, and after you kind of got a cold reception to your idea of a consciousness raising group, where did you—okay, other then calling Jim Cherry, where did you, where did you look for activist opportunities? Or how did you start doing things?

Smith: Well what happened next was, I had already been in Atlanta for a while, and an opportunity, we thought, opened up for my friends who had lived with me at Koinonia, who had since become lesbians and moved to Durham, and started Ladyslipper music among other things. We were going to live together again. As lesbians—I loved community, and we were going to have a communal house. They had met this Quaker woman, who was interested in the same, and she was from Philly. We met several weekends over the course of two years, and decided that Durham was the place we would go, and that we would drop everything—not ignorantly, because we had met together numerous times, we were grown ups. So I had a lot of my energy in that. I quit my job, gave notice on my apartment, and I believed they already had another renter lined up, when it fell through. And I was quite devastated. I went up to be with Laurie and Joanne for a while, in no man’s land, having no job, no household, no apartment—

6-00:16:56 Hershey: So what fell through, the house?

Smith: Well no, the woman from Philly pulled out. She called up one night when I was stoned, because I got stoned five nights out of the week during that period, and look back at that with great fondness and think it was excellent. I was stoned, it was midnight, I get this phone call, and it’s Lucinda saying that she has met with a clearness committee, with the Quakers, and they have decided—she has decided to just simply drop out. And Laurie, Joanne, and I thought of making a trio, but there were some reasons why we were not going to do that, that’s why we were looking for a fourth. So I went up to be with them, but there were numerous reasons why we did not want to do that, even though we loved, and still love each other as good friends. So I was in limbo up there, with all my stuff in storage, and my car crammed full of the necessities. And being a pretty advanced age, you know, mid-thirties. To have this happen, I felt fairly devastated that somone—we were already renting a house up there, an empty house for three months, in Durham. That someone would do that knocked me for a loop, that someone would break a promise of that strength, when so many other people, especially me, had taken such dire action. But all along I had been reading Radical Psychiatry magazines and so on, and Radical Psychiatry was based in San Francisco. I was extremely interested in their therapy, because it was so very social change oriented, and yet not just head therapy, but very deep therapy. I was fascinated, and while I was in limbo up in Durham, I called them and found out that they were going to have a weekend, or rather, I believe a week long training.

6-00:19:23 Hershey: And this was a magazine or was there something—?

Smith: The radical psychiatrists in the Bay Area—

6-00:19:27 Hershey: I see.

Smith: Were putting on a training. So I decided, my life is in limbo, I don’t want to go back to Atlanta having—I liked Atlanta, but I had my going away party! My car was on “go!” I had no job there anymore, I probably could’ve gotten a job, but you know how you feel when you’re in motion? And I was going to be in motion. So I decided I would go to that training and see where the chips—

6-00:19:57 Hershey: That was in San Francisco?

Smith: Right. It was winter. I packed my car with my sleeping bag, some of my belongings, had a money belt with cash in it, got in the car, headed down through Atlanta, had a little party with my friends there, set out by myself in my wheelchair—in the car of course. Hugging down along the Mexican— whatever route runs the whole length of USA down low.

6-00:20:39 Hershey: Yeah, is it Route 66?

Smith: No, it was lower than that yet. Is there Route 1? No, that’s Canada. Well nevermind. Anyway, the lowest continuous route, it could have been 66. I drove through Atlanta, and then I started out with the sleeping bag in the backseat, duct-tape to [lock down the doors while I slept]—because I intended to sleep in the car, and I did. I would drive all day, definitely did not want to drive after dark, in case the car broke down and I’m in the wheelchair. So I would find a sleeping place in a town, and made my way across the USA that way. Yeah. Apparently arrived with bald tires at my sister’s house. She was horrified, I hadn’t noticed. My brother-in-law went out and put new tires on the car.

6-00:21:48 Hershey: Where was that? Where was she living then?

Smith: Gilroy, California. It took me quite a while—

6-00:21:53 Hershey: You made it all that way, woah.

Smith: I drove the whole way, and I was in a freaked out state, because of this betrayal, what felt—it felt like a breach of trust in the human race almost. I was trying to recover from it. Each night on my travels I would call back to someone in Atlanta to say, “I’m alright, I’m here.” When I got midway in some little dusty Texas town, where I was eating in a Mexican restaurant before sleeping in the car—I usually went to hospitals and slept in the parking lot of hospitals, and because of the shift change I just thought it was an unlikely place to be mugged. I would like tape down the car locks with duct tape, and get in the back, and sleep. I was halfway across the United States, almost exact halfway, when I called back and she said, “Radical Psychiatry is

trying to get a hold of you! The training is canceled. There weren’t enough people.” Isn’t that amazing? I said, “Either go back or go forward. You’re going forward.” I went forward, drove to my sister’s, ended up getting in Radical Psychiatry training permanently. Lived out in the Bay—

6-00:23:22 Hershey: So you found another training that they were doing?

Smith: I hung out at my sister’s for almost a month, and found a place to live in San Francisco with Mennonites. Two Mennonite lesbians, which was up twelve steps, and I pulled myself up bodily.

6-00:23:45 Hershey: Really?

Smith: Uh huh.

Hershey: How long were you living there?

Smith: In San Francisco.

6-00:23:50 Hershey: How long were you living there?

Smith: I lived in that house for, I think about six months. Pulling myself up, and then the bathroom wasn’t accessible. After I did get my wheelchair up there, they would bring it up, and then they bought me a wheelchair at Goodwill, which was so sweet of them. So I would have one up and one down. One in the garage, and then when I pulled myself up the stairs, there was one I could get into up there when they weren’t home. And I slept in their den, and paid a little rent, and scooted along the floor every time I used the bathroom. Went to Radical Psychiatry training, which was in a house that also lacked access. And you know, was in a push chair in San Francisco, you know those hills. I was at the most buff in my entire life.

6-00:24:56 Hershey: Hey, so you got a good workout.

Smith: Yeah. And I really liked Radical Psychiatry training, and I’m in the lesbian and gay capital of the world. And that’s when I’m going to have my consiousness rasing groups! You bet. Because Radical Psychiatry was not the greatest on disability, it was an empty set for them. They had great analysis of other things, but not of that.

6-00:25:24 Hershey: So, whose training—was it a training designed just for personal growth, or to become, like a therapist?

Smith: It was to become a therapist, to become a Radical Psychiatry therapist. So there was teaching, and you would attend a group as a client and learn methods, and you would observe two groups led by the teachers. It was very hands on. Very illuminating, I really liked it. And, meantime, I had contacted a center there in San Francisco that was offering facilitated disabled lesbian groups. They had two groups going.

6-00:26:10 Hershey: They were already doing that?

Smith: Oh yeah, I loved it. They had been doing it for a couple of years already, and I joined one of those groups, and that was very helpful. We really talked about the real thing there. And I was—

6-00:26:28 Hershey: Was it kind of what you had envisioned, with consciousness raising based on like—

Smith: Absolutely. It was exactly what I had—not fully envisioned, because I hadn’t practiced it, but it’s what I had hoped for. It was very good.

6-00:26:44 Hershey: And how many women were in your group?

Smith: I think about six or seven, it varied. And there was a leader named Ricky, who had a degenerative eye problem that was causing her partial blindness, and women with different disabilities, all lesbians. Unbelievable. And meanwhile, because Radical Psychiatry had very definite political theories. Very well thought out. I was attempting to get a disability theory that suited, or I thought, fit the situation, and I couldn’t find it. So, eventually, I asked several disabled women who had been in the community, in Berkeley for a good while, and they said no such analysis existed, and that I would have to write it myself, which I did, years later.

6-00:27:54 Hershey: And by the way, what year was this you were in San Francisco?

Smith: It was 1980. I was there for, I think around sixteen months. I sang in the lesbian chorus.

6-00:28:10 Hershey: You did?

Smith: Yeah. It was a little hard sometimes, being in Radical Psychiatry, because they were so onto every other issue, and then I felt my own not have the kind of analysis that the other ones did. But we worked on it. There was one of the two leaders was especially ableist, and the other one was one of the least ableist people I ever met. And I would have to be confronting the other leader

who was very powerful, oh my God. She was like a goddess matriarch with a hatchet. But she was very ableist.

6-00:29:01 Hershey: And how did her ableism manifest, like in your classes?

Smith: She would forget my name, and she would.—it’s hard to say, but it was really clear, I just don’t remember it all. And then we were to be upfront with our resentments, and so I would say, “Becky, when you said such and such....” She copped to being ableist.

6-00:29:27 Hershey: She did?

Smith: She did, because she could hardly deny it, but she never really worked on it. But the other one, Beth, although she didn’t have an analysis, was actually the one who let me in training. While saying to me, “I think that the disability issue would be an interesting challenge to our theory of cooperation.” So her heart and head were in the right place. The other one, who had the opportunity to make the decision with Beth of whether I would get in, when Beth said that, her eyebrows shot very high up, like, “Beth, who are you to decide to take this person in?” So I learned a lot.

6-00:30:24 Hershey: And you were in the disabled lesbian consciousness raising group?

Smith: Right.

6-00:30:29 Hershey: How often did they meet, and how long were you part of that group?

Smith: They met weekly, and I was in it for almost my whole time there.

6-00:30:36 Hershey: And how did thatimpact you? How did that change you views about either disability or what was possible in terms of activism?

Smith: Not so much that, as just a chance to explore the emotions about disability, and in a place where you could be angry or cry, and other people would be totally accepting of it. And then they would be as equally open with what had happened to them past and present. It was just very—all the silence that had been in my home, and in the rehab center where I worked, and even to some extent, in the Radical Psychiatry teaching group, because they didn’t fully have that consciousness, I didn’t feel totally safe about that. In the lesbian disability group I felt totally safe, and everybody was participating at their own level, and so you would learn so much from what other people were dealing with. It was very valuable—but I didn’t have time. By the time I did get a half time job, as a secretary at some kind of a women’s agency, and that place was inaccessible. It was an inaccessible building.

6-00:32:19 Hershey: And how did you get in there?

Smith: Every day I arrived, sat in front of the building, and hustled my way in with passer-bys. Up those three steps.

6-00:32:32 Hershey: And how long did you work there?

Smith: Seems like it was about a year. After about six months of living in San Francisco, my friends were fighting, that I was living with, and they were nice, but I was ready to move on. And I read a very California ad, that said, “Two non-disabled lesbians and heterosexual male wheelchair user seeking fourth open-minded housemate.”

6-00:33:12 Hershey: And where was that?

Smith: Oakland. So I answered that ad, and went and lived with them, and had to commute to training and my job, but—

6-00:33:23 Hershey: And where was your job?

Smith: In San Francisco?

6-00:33:27 Hershey: And what was it?

Smith: That was where I was a secretary for that women’s agency half time.

6-00:33:31 Hershey: Do you remember what it was or what you did?

Smith: I remember that I typed things, and answered the phone.

6-00:33:38 Hershey: You don’t remember what they did, as an agency?

Smith: I truly do not. It’s a good thing we’re having these interviews now. [laughter]

6-00:33:48 Hershey: So, how was your living situation with the lesbians and the male wheelchair- user?

Smith: It was interesting and it was fine. I liked David a lot, and he was on the main floor with me, because we were the wheelchair users. And the women were upstairs on two different floors. They were classic, West Coast, political people; in that they could talk and split hairs for a long period of time about whether something was politically correct to do. So there would be very long

house meetings that I would just as soon not have been at. Where each little thing was debated in great length, and I would always feel that I knew the outcome, and that they were kind of debating for its own sake, and an hour later, they would decide what I knew they were already going to decide.

6-00:34:48 Hershey: Like what? Can you think of an example, what issues?

Smith: Uh, race-connected issues about the people who lived next door, what to do, how much to charge on each floor of our house, based on privilege and income. And all things that kind of matter, but I would always feel that I knew the outcome, because I did. I knew what they were going to decide, and that part of relieving their sense of obligation to be politically correct was to have these really long talks. But meanwhile, I was very busy, between my job and my study. I did not interact with them as much as I might have.

6-00:35:33 Hershey: And what about the disability rights movement that was going on there? Were you aware of it? Were you involved in it?

Smith: Well—

6-00:35:42 Hershey: As far as some of the—

Smith: No, I wasn’t involved in it, I was not. I did not have time for it. I did apply at the famous Berkeley Center for a job opening.

6-00:36:00 Hershey: The CIL [Center for Independent Living]?

Smith: Yeah, the CIL, and I did not have the right disability. So for all those years of having a hard time, you know, finding a job because of my disability, or sensing that I did; I then went to this center, but I didn’t have the right disability.

6-00:36:13 Hershey: What do you mean? How does that—What was—

Smith: They were really looking for a person with a more severe disability. I can’t remember exactly what. They really had something very specific in mind, and I think it involved having cerebral palsy. I know that sounds vague, but they pretty much told me that I didn’t—I can’t remember exactly. But they pretty much told me that the issues I was dealing with were not the issues that they needed this person to be dealing with.

6-00:37:00 Hershey: Was it for the attendant services or something?

Smith: No, it was working with clients. I just remember not getting that job, and going to look for another one.

6-00:37:13 Hershey: So did you have an active social life around the Bay Area? Were you dating?

Smith: No, no I wasn’t dating, I wouldn’t have minded being dating; I had one that started out that was not good. Oh actually, then, fairly near the end, really had a very hot, short affair. I always kind of go for the heart, really. I mean I’m usually not interested in just a sexual liaison, although I have no criticism of people who are, none at all. It just isn’t my wiring. And I kind of fell in great love, so to speak, with one of the women in my disabled lesbian group, and so we had sort of a intense affair the last six weeks I lived there. I also had a brief affair that was much lighter, with another woman in the group who was blind, who emailed me within the last year, having noticed my Concrete Change work. Catherine, who lives in upstate California, blind woman. But it was my full intention to come back to Atlanta, even when I went, I considered it a extended field trip. So I was not working really to build long lasting relationships, particularly. And at the end of my training, there was a feminist counseling collective in Atlanta that had an opening, and I did know some people who worked there, and they hired me while I was still in California. And I came back to Atlanta, and joined that counseling collective.

6-00:39:19 Hershey: So did that mean they provided counseling for the community? Or that it was like a collectively run business?

Smith: Yes, it was a collectively run, in fact there were twelve women counselors, and it was called Karuna Counseling for Women and their Friends. It was a good little agency. [pause] God, I feel like I’ve lived about a hundred and twenty years.

6-00:39:55 Hershey: You’ve packed a lot in.

Smith: So I came back to Atlanta, joined the collective—

6-00:40:02 Hershey: And what year was that, that you came back?

Smith: I think it was about 1981—I hadn’t turned forty yet. Lived in a house with a couple other women, worked at Karuna, and was not making enough money at Karuna, we did sliding scale, so decided to—most of the other women also had another job on the side—although I loved working there, it was a little difficult, because the Radical Psychiatry I had been taught was somewhat different. And I would have had an easier time if I had been geographically closer to my mentors. I was able to do it, but I was never completely comfortable with the role. So I worked there for four years, running a lesbian

group, two lesbian groups, and seeing some people one-to-one. Meantime, I went and got an English as a second language job at a junior college, one of those jobs where you’re adjunct, so you get a fairly low hourly pay. Because it was teaching English as a Second Language writing class, I had tons of work, I had to mark all those papers of people learning to write. So right in there, I experienced a tremendous nosedive in physical energy. I could hardly make it. I just, did not know what had happened to me.

6-00:42:06 Hershey: You think you were just working too hard? Or were you having post-polio syndrome?

Smith: It turned out I was having post-polio, but no one knew about it. It didn’t have a name yet. So, after having had good energy, for most of my adult life, not as much as non-disabled people, but a lot. I then did not have energy and I could not understand. I would tell Karuna about it and cry at our meetings. I went to a doctor who tested me in a lot of ways, and she couldn’t find what it was. She didn’t doubt that something was wrong, she didn’t like try to tell me it was in my head, but she had no explanation. My blood work was fine, everything was fine, and it was to the point where I would come home from my afternoon of teaching, on a Friday evening, go almost straight to bed, let’s say by 5:00 p.m., stay in bed virtually all weekend, go nowhere, get up Sunday afternoon and mark some papers, go back to bed, and still barely be able to function on Monday morning. I’d get up and drink coffee and eat a candy bar to try to get wired enough to go. Well, one night I was coming home after several months of this. Meanwhile Barbara [Rose] had moved in to our collective house, we had interviewed her and really liked her, she was very direct. Asked us these few questions, told us these things. I really liked her. She moved in. We were kind of flirting. Actually, we were more than flirting, we had begun our kissing in the hall and that sort of thing, and then the post-polio stuff was also going on. Well, I came home from work, on the way home, I was exhausted on a Friday, I stopped at a grocery store, to buy my TV dinner, because I knew I couldn’t cook anything else but that, bought a Newsweek off the stand, which I —I never read Newsweek, I probably had bought four in my whole life, but there it was, and I took it for my Friday evening entertainment, and I cooked my little dinner, and I went to bed. It was like 5:30 or six, and I was reading Newsweek, and I turned to, I think the science section, and there was an article about what was happening to me.

6-00:45:03 Hershey: About post-polio?

Smith: About post-polio. You know, I hadn’t read anything about polio for decades, and there it was, that all these people were experiencing this energy drop. And doctors did not know what was causing it, they were theorizing that perhaps the virus had lain dormant and was re-activating. I was just so scared. Oh, and one of the other things it said was that they thought the worst scenario would

be that you would return to when you first had polio. Well, you know, as I told you before, I hadn’t been able to move, and there I didn’t have any family there or backup system other than my friends, and I was just petrified and horrified. I didn’t even finish reading the article. Well, most of my friends were shrinks, because of my work at Karuna, and they were all shrinking heads, I mean I couldn’t call them! I had made a couple of calls and couldn’t get through, and I was in the kitchen making another call, when I heard the door open, and I said—I had a couple of roommates, and I said, “I hope that’s Barbara,” and it was. And she came to me, and so I was crying on the phone, and not being able to get through, and she was so sweet. She got down on her knees and put her arms around me, and— [sigh]

6-00:46:49 Hershey: Wow. So did you remember what year—?

Smith: Well, must have been about 1984.

6-00:47:00 Hershey: And that was really sort of the first time when post-polio was even being recognized by anybody, right?

Smith: I believe it was, and—

6-00:47:09 Hershey: And by you.

Smith: Right. I mean, my doctor had never heard of it, certainly. And you know, if I remember right from the article, the way it came about was that there was this one polio group still meeting, old polio people. I believe they met in St. Louis either every year or every other year, and they began talking to one another, and all of them had stories about how their doctors had not known what was wrong or had discounted them and said that it was mental, or this always happened to people, it’s just old age. And by them putting their heads together, they were able to get the medical establishment to look into it and realize that it was an actual physical, material, noticeable occurrence. And it turned out of course not to be the virus laying dormant, it turned out to be something else entirely. But in fact it is measurable. They know what goes on, and they know what not to do. I even wondered, you know I loved Radical Psychiatry, it crossed my mind a few times, I wondered, because over-stress, over-work syndrome on the muscles you do have; I did wonder if my intense workout there in those months did not exacerbate it, since it started—

6-00:48:40 Hershey: Right, wasn’t the best, climbing up and down all those stairs?

Smith: Right, day after day. And physically pushing some of those San Francisco hills on the way to work, from wherever parking place I could find. But you know, I mean there’s no point thinking that way.

6-00:48:57 Hershey: Right. Was that when your relationship with Barbara started?

Smith: Yeah, well we had already been kissing and stuff, and then her being so wonderful to me when I got that news, and then very soon after that, the landlord said he was selling the house we were living in, and so we all— the household had to split up. And at that point, Barbara or no Barbara, I mean, we hadn’t been going together very long. So, that’s not where I would—I’m not a U-haul kind of a girl. So we had to make some rather quick decisions about where we would live, all of us in the house, I believe four women lived there then. Barbara and I did in fact decide in the couple of months before we actually had to move out, that we did want to live together. I found a great little house to buy, and we moved in.

6-00:50:05 Hershey: And was the house accessible or easily adaptable?

Smith: It was quite easily adaptable, it didn’t have a ramp, but it only had two steps up. So, I had the realtor pull me in, and I bought the only house I went in. I liked it very much. The bathroom door I could squeeze through if we took off the little lathing edges on the door. And so, that’s all the adapting I needed to do. Now that I’m somewhat more disabled I would need to do more, in terms of bathing, but for then I could jump in and out of the tub. Jump is not exactly the word, but you know, haul myself.

6-00:50:54 Hershey: So after you read that Newsweek article, did you bring it to the attention of your doctor? Or did you go seeking medical attention for that?

Smith: I’m pretty sure I told my doctor. Some months after that, an Atlanta Post- Polio Association began that hadn’t existed before, and I went to that and learned things. Meanwhile, I kept trying to teach for a couple of years, and trying to work at Karuna. I stopped working at Karuna, was able to go on full time at teaching and get a decent salary. You know, your salary goes way up once you’re not doing those adjunct classes. [pause] I’ve got my chronology a little off here, because when I first bought my long term disability insurance, on a whim at that college, I did not yet have post-polio syndrome. So it’s just luck. I remember sitting there thinking, oh $17.50 a month, do I want to do that? Well thank goodness I did. So eventually I just couldn’t do the teaching, I could not project my voice. And I also couldn’t, I just couldn’t do it. So there was one really good old medical doctor in Atlanta who had gone to court for another person with post-polio, and established a precedent for post-polio being, considered it a new disability, precedent there in the Atlanta area. I, through the Post-Polio Association, found him. He was the doctor, when I saw I could no longer do it, he was the doctor that prepared my court testimony, and I was able to get on disability, and collect $900 a month on that long-term disability.

6-00:53:23 Hershey: What year was that, that you went on long-term disability?

Smith: Well, it was after I met Mark. So, to connect all that with my rise in disability consciousness or disability activity, my consciousness was kind of up, but I didn’t have anybody lighting my fire locally in terms of really taking it to the streets and so on. And I was subscribed to the Disability Rag. So I was into the movement in that sense, and whatever year it was that Mark came to town, he asked Mary [Johnson, editor] of the Disablity Rag for her mailing list.

6-00:54:17 Hershey: You’re talking about Mark Johnson,just for the record?

Smith: Right, we’re talking about Mark Johnson who had had his own consciousness raised in Denver, with ADAPT. He was moving to Atlanta, and of course I didn’t know him at that time. He wanted to find like-minded disabled people. And he asked Mary Johnson for her mailing list, and I was still working, I was still teaching ESL. He wrote me a letter saying, “Hi, I’m coming to Atlanta, or I’m in Atlanta, and I want to find other disability activists.” And at that time again, it was taking everything I had to get to work and back, but I sent him a donation. He even remembers how much it was, fifty dollars. [laughter] Then he let me know that he was holding an action down at the bus—MARTA station.

6-00:55:19 Hershey: The MARTA station?

Smith: Uh huh. The Metro Atlanta Rapid Transit Authority, on accessible buses. Because at that time, of course, there was not a lift on every bus. It was unheard of. There was, I think, a para-transit system. So he was working at what was then called Shepherd Spinal Center, and he even had some clients down there, he’s not allowed to do it now, but he had some patients down there, and we had a “Access Now” rally, and that’s where I met him personally.

6-00:56:01 Hershey: Do you remember what year that rally was? Or when you met Mark?

Smith: I would say, possibly 1986.

6-00:56:12 Hershey: Okay, and how did the rally go? How many people turned out?

Smith: Oh, there were thirty maybe. Just shouting slogans and so on. Some of them very newly injured, because Mark had had them brought in the Shepherd vans. I met a few other local disabled people who were into relative rabble-rousing. And we just shouted slogans. And then Mark made a date with me to [pause] get together. We went and had lunch, and he was interested in starting a little disability group

6-00:57:01 Hershey: And you mentioned to me a few weeks ago—you told me a little bit about that first meeting between you and Mark, do you want to talk about that?

Smith: Oh that was funny, because here’s this good looking heterosexual man, and this lesbian about ten years older than he. Most of my activism had been with women since I had moved to Atlanta. I rarely did anything social or [political] work with men. And so, here was this disability opportunity, I was not going to pass it up, but here’s this man, and I am eating lunch with him. And I said to him somewhere along the way, “Well actually, I’m not accustomed to working with men, I’m a lesbian. And I’ve done most of my political work with women here.” And he sort of said, “Well that’s okay.” As if he were forgiving me [laughter] whereas I was trying to warn him. I was trying to say, “Uh, mister, you’re going to have to maybe not act like some men act.” And he was trying to reassure me that he was not going to cast me out to the devil. But we didn’t actually talk about that. It was just something I remember as one of our interactions. Shortly after that, he found a woman named Susan Robinson, an able-bodied woman, through the Fund for Southern Communities, which was a progressive—to over-simplify, you could call in a progressive United Way, in that it would raise funds and disburse them to more progressive groups that United Way would be unlikely to fund and in smaller amounts. So Mark was working with them informally, and he met a young woman named Susan Robinson, and he also met Elaine Kolb, who has written disability rights songs. And Mark, and these three women, all of whom were lesbians, started a group called Let’s Get Together that met—I think we met weekly. We had very exciting meetings. We were ready to go!

6-00:59:28 Hershey: And where did you meet, at your homes?

Smith: Yes, well we met at my house actually, in my living room, or rather, in my dining room. And planned our actions—or planned our activities. And early on, we decided—we didn’t have any money, not a cent. We planned what we would do, I don’t remember what all we did early on, but we got our first grant from the Fund for Southern Communities, of two thousand dollars. And we were thrilled, and we were going to go try to make a disability rights movie, and our first shoot would be the San Francisco ADAPT action. So, I was still working, and I took off work and went to that first action in San Francisco, about transportation. And of course I was knocked out by this big group of disabled people, rasing hell. And I like to remember, too, a feeling I had, because it’s useful to remember, of wow, maybe they’re going too far, is this really totally okay?

6-01:00:52 Hershey: Was that your first experience with civil disobedience?

Smith: Yes. I mean, I had been in lesbian marches, which was very scary back then in Atlanta. The first march, I was scared, because I had my wheels and I was

going to be so evident, and yet I was employed by the state. There were actually people marching with the proverbial paper bags over their heads, there were only four hundred people at the first march I was in. So I was into some kind of street activism, but not actually civil disobedience. Plus I had just never seen that many pissed off disabled people. And I thought, I really thought this, is a lift on every new bus, isn’t that asking for maybe a little too much? And I must—I need to remember it, so that I have a better understanding of how slowly our consciousness raises. How really, some people may get it right away, but for many people, many of us, it just takes quite a process before we—things gel, and things are still gelling for me, they’re not all gelled. But I do remember the feeling that I got over it very quickly out there, I mean I was mostly thrilled, but I like to remember those couple of doubts, too.

6-01:02:22 Hershey: Did you voice those doubts to anyone?

Smith: No, no I didn’t. Because they weren’t really long lasting.

6-01:02:29 Hershey: Yeah, it was just a brief—

Smith: It was a flicker. Mostly, I was thrilled. That’s where I met you and Robin [Stephens]. I feel sure it was there, because—

6-01:02:39 Hershey: Not me, I wasn’t there.

Smith: Oh okay, that’s where I met Robin then. Because we were in a room together with several lesbians, in the hotel. Our movie didn’t turn out very well, because the footage got all messed up, was unusable, but that was just pivotal for me, that action.

6-01:03:09 Hershey: And did you—did you sort of join ADAPT from that time on, did you go to other actions?

Smith: Oh yes, I was totally in.

6-01:03:18 Hershey: And so when you returned from that to Atlanta, were you doing—like ADAPT organizing? Was that what Let’s Get Together did? Or did you do other things?

Smith: We did that for—

6-01:03:32 Hershey: Did you build an ADAPT chapter in Atlanta?

Smith: I don’t know—We probably called ourselves ADAPT, I know that before too long, I had my first arrest in my own hometown, down there at Greyhound.

6-01:03:50 Hershey: Okay, so tell me about that.

Smith: Well, Greyhound was not being at all cooperative, and we had an action with, I believe, just eight people where we went down to Greyhound in Atlanta— there’s no reason for me to name the people. Mark Johnson was one of them. And our demand, there were only eight [of us], but we went into the president’s office, or the manager’s, and our demand was that he call the Greyhound central office, and tell them that they needed to, you know, we read off our demands of what services they needed to start providing. He refused to make the call.

6-01:04:42 Hershey: And this was probably in coordination with ADAPT around the country?

Smith: Yes, absolutely. So, when he refused to make the call, we decided we would go for arrest. And our puny little group, and four of them would not do it, one could not, he was from India and didn’t even have citizenship. He would have been deported. And there wasn’t pressure, oh you got to go get arrested, four of us stepped forward, and we blocked the buses, and you know, it doesn’t take very many to block a bus. We got arrested.

6-01:05:22 Hershey: So you and Mark and who else?

Smith: Me and Mark, a woman named Gail, and I forget who the fourth one was. It might’ve been Bernard, I believe it was Bernard Baker, who had done some disability activism way before Mark arrived, just becoming, not so much organized as just—he crawled on a bus, he was so upset that they wouldn’t take him. He crawled on and drug his wheelchair on. That was kind of notorious, and that’s how Mark found him. So I believe it was Gail, Eleanor, Mark and Bernard, I’m not sure. We were on TV, you know, being loaded into the paddy wagons.

6-01:06:03 Hershey: And what did they do, just ticket and release?

Smith: They carried us to the jail in these paddy wagons that didn’t have lifts or anything, the guys had to pick us up, finger printed us, released us. It took, you know, a good number of hours.

6-01:06:23 Hershey: Had you also been arrested at the San Francisco ADAPT?

Smith: At what?

6-01:06:29 Hershey: At the San Francisco ADAPT action? [pause] Had you been arrested?

Smith: I’m thinking about that. No, I don’t think so.

6-01:06:38 Hershey: So was this probably your first arrest?

Smith: I think so. I don’t think I was arrested in San Francisco that first time. I believe this was my first arrest. It did not feel difficult to do, by that time I understood the civil disobedience. You know, I understood civil disobedience fully from—I mean partly from the black civil rights movement, and the suffragists breaking windows. So—

6-01:07:14 Hershey: Do you remember what year the Greyhound action was?

Smith: Mmm—maybe ’87? And then somewhere in there, well no it would’ve been—I guess ’87. Somehwere in there, I had my Concrete Change epiphany, although I did not have the name Concrete Change.

6-01:07:39 Hershey: So what was the epiphany?

Smith: Well you know, I was interested in Habitat for Humanity, because I think it’s a good organization, and also because the seeds of it started down there in that farm I had lived in. One day Barbara came home, we were living together and we were partners, and she said, “Oh, there’s some new Habitat houses up, couple miles from us.” The mayor—the then mayor, Andrew Young, had given some acres of free city land to Habitat, and they had built 20-some brand new houses together. And just out of interest in Habitat, with no disability agenda whatsoever, we drove out to drive around and look at the houses. And I thought, these houses could have all had access, well, they’re all brand new.

6-01:08:40 Hershey: They all had steps?

Smith: They all had steps. I knew that if you went inside there would be narrow bathroom doors, because virtually every house had that. And I thought, holy mackerel, these houses could have all had access. Why are we building houses that create the kind of misery I have lived and seen, why could they have not all had access? And that’s where that thing waved over me, just to see things differently with different eyes. Because I had obviously seen hundreds of thousands of new houses, and not thought a thing. The very next day in the paper, featured this one woman with a disability who had moved in there and whose house had access.

Hershey: Really?

Smith: Yes.

6-01:09:35 Hershey: So they had designed it for her?

Smith: Exactly. And I thought, well they did it for her, that just sort of shows that they could. I went over and saw her house, and they had created access from the alley. I went in, and she was living there with her two kids. I went back to Let’s Get Together, and said, “Hey, every new house with access.” They were totally into it.

6-01:09:59 Hershey: And do you know about what year this was?

Smith: Well, I think it was probably ’87.

6-01:10:11 Hershey: And so you talked about it to Let’s Get Together and to Barbara probably?

Smith: Oh sure. And they said, “Oh yeah, why not?” We had lots of projects going, just us few. And we were working on transportation. I think by that time we had probably, or else soon after, we had met the now deceased wonderful activist Nancy Moulton, blind woman who was very radical, very stubborn, very quiet, into health care for all. So that became one of our mantras too, or we just worked every issue as we had time for.

6-01:10:56 Hershey: And did Nancy work with Let’s Get Together?

Smith: She did eventually. We stayed just four people for quite a while. And then, then we—Concrete Change did quite a few little radical things locally. We didn’t have the name Concrete Change yet, but we went to a home show, where I’d gone in advance and saw they had a special, supposed to be super advanced home, home of the future, and it didn’t even have access to get in. It was called a Smart House. It didn’t even have access to get in on the showroom floor, it was up a couple steps. So we went back, just four people again, that guy from India, three of us actually, Raj, Valencia, and Eleanor went back in—sneaked in, unfurled our sign, “Smart house? We don’t think so!” And our fliers, we passed them out, and we got ejected, but not before we made our point. That’s the kind of things we did.

6-01:12:08 Hershey: Yeah. Did you get some press?

Smith: No, not that time. I don’t think we even called the press. But we got attention. I mean, the manager of the show came around. He promised to have access at the next one, and I think there was, but I wouldn’t swear to it. So we were doing that kind of thing. The first quiet activism we did was—once we had our idea, every new house with access, and I don’t even think I had a

computer yet. I think I typed this letter. I typed a letter to four affordable housing groups in Atlanta, one of which was Habitat for Humanity, and there were three others, and I sent it about my idea, every new house with access, and why—like the damage lack of access was doing, and couldn’t it be done, it seems to me, rather easy? It was a one-page letter which I still have, and sent it by name to each director, and did not get back any answers or any phone calls at all. Meanwhile, a little group had started called Lesbian Feminist Concrete Change, it was a women’s auxiliary. Nancy Moulton, as a heterosexual woman was in it, Barbara was in it, and several other mostly non-disabled women, actually, lesbians. [Actually in that group I was the only PWD except Nancy.] We did various actions which I can tell you about, but first off, shall I tell you about getting the name Concrete Change?

6-01:14:02 Hershey: Yeah, yeah.

Smith: First I was just calling it “basic home access,” and it didn’t have a name. After one of our Let’s Get Together meetings, Mark Johnson was hanging out in the doorway, we were just chatting. And he said, “We need to start doing something where we can see, visually, that we succeed. How about we try to contact all the 7-Elevens throughout the state, that just have one step up, one little step, and see if we can get them to put in a ramp, because we need to see some concrete change.” And then we looked at each other laughing, because you know, concrete, you lay down concrete. We said, “Concrete change, you know, no pun intended.” Then we said, “Concrete Change!” together, because we realized that would be the new name for this home access push.

6-01:15:04 Hershey: What year was this do you remember? Or is it in your time—?

Smith: Yeah, I think it would be around 1989.

6-01:15:13 Hershey: So that’s how the name of the group was, or the movement was named.

Smith: Yeah, I know—I called Mary Johnson, either I called her—no, she called me, and we talked about the new issue And she said, “This is very exciting.” She printed in the Rag the first visible mention of the concept that every new house could have access. I think that was before Concrete Change had its name.

6-01:15:49 Hershey: Speaking of names, where did you come up with the term “visitability”?

Smith: Not for several years. Not ‘til after the first victory, we were still calling it “basic home access.” We were approaching builders, and they would just look at us like, what? It can’t be done. Wouldn’t help us with any technical information. I found one guy, the guy who had put the hinges on my door for

rehab, was a bit of a social misfit, but he was willing to help me, because he knew some carpentry things. We wrote the booklet Entryways, about the zero- step entrance. That was still before we had the name Concrete Change. Published this little booklet—

6-01:16:42 Hershey: So is it like a technical manual?

Smith: Yes, it was a technical manual about the zero-step entrance. And you know, here’s this English major writing this manual, because when all these universities were not doing anything like it—they had these big grants, which at that time I knew nothing about anyway. But [pause] one of our actions was, well when Habitat and those didn’t answer our letter, we began to contact them personally. I went with two other disabled people to talk to the director of Habitat, and tried to talk him into trying the concept of a new house with access, even if the person didn’t have a disability. And it was just unheard of to him, I mean, to everybody. It was just the most outlandish thing to ever be proposed. I remember he sat way back with his arms folded, and he said, “Well, we build for poor people, not disabled people. And if somebody does have a disability, we’ll do it for them.” But he promised he would have his construction engineer get back in touch with us, but he was cold to the idea. So we would call Habitat periodically, “Is the construction engineer ready to talk with us?” And we would never hear back, six months passed.

6-01:18:16 Hershey: And you met with—was it the director?

Smith: The director, yes.

Hershey: Of Habitat?

Smith: Right.

6-01:18:22 Hershey: What was his name?

Smith: I forget—Larry, his first name was Larry.

6-01:18:30 Hershey: Wait a minute, that booklet you wrote about zero-step entrances, how did you—What did you do with it? Did you distribute it—?

Smith: Yes.

6-01:18:40 Hershey: To builders?

Smith: No. I’m sure we showed it to some builders. We also had some help from down at city hall. How we obtained that, I don’t know. I don’t mean money

help, but there was one guy down there who agreed that technically we were on the right track. I thanked him in the index, or the afterword rather. We would anounce the availability of that book, for example in the Rag I think, and people would send for it. Quite a lot of people across the country sent for our stuff. If it hadn’t been for the little disability magazines, we would not have got a start. But Centers for Independent Living would send for things, we would send our little brochure that we had, and our booklet.

Meanwhile, Lesbian Feminist Concrete Change kept pressing Habitat, and the chairman of the board agreed to meet. And he came over to the house, with all women and this man. We told him our idea, and he again was very cool to it, and sat with his arms folded, and told us we needed to go find out xyz about thresholds, and all kinds of things, which became a very familiar tactic to me later, but at that time was just, where would we get that information? Just throwing up one roadblock after another. But I remember he said, “If we did that, it would slow down our learning curve.” That was a fairly painful thing to hear, like, well disabled people aren’t worth our stopping long enough to learn something new for. In other words, it would take us longer to build for these deserving, poor, able-bodied people, so we don’t want to slow down to learn anything.

So I do remember when he left, we as women felt pretty bummed for an hour or so, because we had been bested by this man with supposedly more technical knowledge than we had. I was ready to dust off my feet and move on, as Jesus instructed in the New Testament. When somebody doesn’t hear your message, and you really tried, go on to the next one. But this one woman [in the group], Helena, said, “No,we’re not giving up.” She wrote a letter to the board, xeroxed it, and took it down to the Habitat office in Atlanta—mind you, we’re not talking about national, we’re talking about the affiliate in Atlanta and put one in every board member’s mailbox. And lo and behold, we got a phone call from Habitat, saying that they were going to try this. And the construction engineer, in late December 1989, came to a meeting of Lesbian Feminist Concrete Change. not Let’s Get Together in that case. And he told us that they were going to try this, and that he wasn’t sure that they could do the zero-step entrance, but they would start doing the wider door right away. He was very nice, had a very different attitude.

6-01:22:20 Hershey: Do what remember who that was?

Smith: Yes, Gil Nicholson. His attitude was, we’re going to try. He had an engineering degree, and he was a construction crew chief. So, after he left, we just thanked him of course, but after he left, we just—these women just clapped and yelled, “Yay.” We also had, at our party—it felt like a party, it was acutally a meeting, the mock-up of the first Concrete Change t-shirt. So I know we didn’t have the word “visitability” yet, or it would have been on the t-shirt.

6-01:22:55 Hershey: So what did it say?

Smith: It said on the front, “Concrete Change,” it had this blue figure in a wheelchair, but a little more active, leaning forward, going up a ramp that said“Concrete Change.” On the back it said, “Basic access to every new house, one no-step entrance, 32-inch doors.” And then below it it said, “Because you gotta visit friends and lovers.” I remember Barbara, from California, wanting me to say—she was very into disabled sexuality, when I was debating whether to say “friends and neighbors” or “friends and lovers” she said, “Go for friends and lovers.” So I had that on the shirt.

6-01:23:40 Hershey: Did you come up with that slogan?

Smith: "Because you gotta visit friends and lovers"?

6-01:23:47 Hershey: Yeah.

Smith: Yes, with Barbara’s addition of—substitution of the word “lovers.” Which lets me know that by then I had quite a national little network.

6-01:23:55 Hershey: Wait, which Barbara was this?

Smith: Uh—help me think of Barb’s last name.

6-01:24:02 Hershey: Waxman?

Smith: Waxman, Barbara Waxman. She’s now passed away. And so, we had our t- shirt, we had our first victory, and those Habitat houses started to appear with zero-step entrances.

6-01:24:23 Hershey: I’m kind of curious how this Lesbian Feminist Concrete Change group worked. Like, Let’s Get Together would sort of lead on the issue, but the work that the Lesbian Feminist group did a lot of support?

Smith: I would describe it as two equal spheres.

6-01:24:44 Hershey: Right, and they were working together, obviously?

Smith: Well—

6-01:24:48 Hershey: Or working on parallel tracks?

Smith: Parallel tracks, with the same goal. In other words, poor little Let’s Get Together, I mean great, Let’s Get Together; but we had four or five people [and four or five issues]. And Lesbian Feminist Concrete Change just was able to do more [on housing] in a focused way.

6-01:25:04 Hershey: So for instance, when they would go to a board of directors, would they say, “Hi we’re Lesbian Feminist Concrete Change?”

Smith: No, they sure wouldn’t. [laughter]

6-01:25:15 Hershey: Like, how did they identify?

Smith: Concrete Change.

6-01:25:21 Hershey: Okay, so they would leave the word "lesbian" out of it.

Smith: Yeah, yeah. I mean and sometimes, a lot of times we would work together, for example, in about 1990, when HUD [Department of Housing and Urban Development] was considering the proposals for new apartment buildings of four or more units to have access; the [National Association of ] Home Builders were fighting that tooth and nail. They were trying to rip the guts out of those access requirements. And at that time there was Option One, Option Two, and Option Three; all of which were fairly different, and Option One was the only one that had any teeth. Atlanta Concrete Change began to work on that issue, trying to get Option One. So, we went out and occupied the [Georgia] Home Builders Association. Already scoped it out and found out they had no ramp, and had to bring out own little ramp to get our activists in, we had about twenty people, and we went and blocked the doors, and our demand was—we held it for a couple of hours, demanding that the president show up, who lived in a different town, and he did come. And we got him to call the national office and say that activists there were saying that they had to do Option One. But Lesbian Feminist Concrete Change came along, several of them, and assisted—[Marlene Johnson, and Helena Montgomery, and I think Cindy Livingston taking pictures. Later on Joanna Colrain. Libby. Charlene. Anne.] So sometimes we would do things separately, sometimes together, but never one telling the other what to do. It was just that there was more than enough work for five little groups, and so that’s how we operated.

6-01:27:15 Hershey: But you were in both groups.

Smith: Yes, yes. And in a sense Barbara [Rose] was [in both] , because she was always home when Let’s Get Together met. Another thing that Lesbian Feminist Concrete Change did was—the Young Republicans were hosting Jack Kemp, secretary of HUD, and also Charlton Heston. So, we bought two

tickets to the Young Republicans and went down to the hotel, and our two people went in and mingled—[Gail Love and Gail Mays—but the rest of us—Cindy and Betty and Barbara and I]—sat literally in the shadows on some unlit couches, waiting for this to all unfold, because our big action was going to be that our two people who had tickets, during Kemp’s speech, were going to unroll a big banner that said “Option One” and begin shouting, “Option One,” which they did. And he said, “Well, what do you want? You’re being very rude.” They said, “We want to meet with you afterwards.” And so he agreed to, and in fact—they came running to us, “He said he’d meet with us!” And we met with him in a hall after the speech, and gave him a flier that said, “Kemp wimped out.” He was furious, he turned red in the face, his veins stood out. And we tried to explain to him, and did explain to him that HUD was listening to the Home Builders too much. And there were also disabled people in Washington working this like crazy. And somehow, all of that together, Option One basically prevailed. It’s why there is access in every new multi-family building, not [just] because of Concrete Change work; we were an adjunct to what some of the—desk-type activists in—DC were doing. Although, we kept at it. We kept at it for over a year, and in fact, Concrete Change led the first—ADAPT action that went to HUD. I was up at ADAPT [in Washington DC], having gone to many, a good number of actions by then several; and Pat Puckett was helping me, because we really wanted to see if we could invade HUD without interfering with ADAPT, fully, truly getting that ADAPT can only do one issue at a time.

6-01:30:16 Hershey: So this was at a national ADAPT action?

Smith: Right, and ADAPT—

6-01:30:20 Hershey: Do you remember what year?

Smith: I’m guessing 1990, and I’m not sure. I brought photos of that. ADAPT was supportive enough of what we were doing that they included a flier in the mail-out prior to the action. But there were mixed feelings in ADAPT about doing anything on this. And we were not going to do anything whatsoever unless a time appeared when working the transportation issue was already finished. In other words, we weren’t going to draw anyone away. Well, the golden opportunity occurred on a Thursday when a bunch of ADAPT was in jail, and the rest were just hanging out until the party that night. And so Pat and I taped up signs, which I still have a copy of, handwritten signs in the elevators, in the hotel said, “If you’re interested in this issue of trying to make HUD choose Option One, meet in front of the building.” And there were forty people out there. I had already scoped out HUD, and we went and HUD has these two big entrances that are separated by quite a distance, like two arms reaching out; and we divided into two groups, about twenty in each group, Robin was one of them, and dashed inside of HUD, and occupied it, and got—

somebody fairly high up to come down and receive our flier. We chanted, had our demands, someone came down and got them. Wade Blank was still living, because the next day at an ADAPT meeting he said he had heard there was a good HUD action. So some of ADAPT was glad we did that, and some was nervous about it or critical of it, is my impression. But, the Option One—

6-01:32:56 Hershey: Yeah, can you just talk about what Option One was briefly?

Smith: Option One, of the three options that were in front of the public and I guess HUD to be chosen—

6-01:33:07 Hershey: It was a set of regulations?

Smith: A set of construction guidelines for what new apartments had to have. And their other options were—had loopholes all over them. What I’m saying is not the most accurate history of this, I mean someone else would be able to tell you what the difference between options one, two, and three were, more specifically. All I know is that Option One contained real meat, and in fact, was the option that was chosen, and has created, in spite of the fact that it’s not uniformly enforced, hundreds of thousands of accessible units.

And so in early 1990, a young architect from Japan came to visit. Some Habitat houses were already up and he wanted to see them. He was in the USA, studying for a year in Berkeley and then he flew around the country to learn a few more things and have more dialogues. He flew into Atlanta, and I picked him up and brought him to the house, I have a photo of him posing with our newly printed t-shirt, and drove him by the Habitat houses, and showed him some papers I had. It was in that conversation he said, “You know, in Europe for this concept, they’re using the term, ‘visitability,’” I instantly really like that, because at that time we were having difficulty when we articulated the issue. People listening to us, whether disabled or non- disabled, would miss—would not hear what we were saying. We were saying, “Access in every new house.” They would reply back, “Yes, we do need more housing for disab—handicapped people.” And we had difficulty even having people grasp it. So I really realized that the word “visitability” in and of itself, as it says on the Concrete Change website, in and of itself means somebody else’s house. And in that sense it would sort of ratchet people’s brains away from the old way of thinking that a house would only have access if the first occupant had a disability to a new way of thinking of putting the basics in every new house.

6-01:36:05 Hershey: Do you happen to remember that Japanese architect’s name?

Smith: Well his nickname was Yoshi and his last name was rather long, and I can’t remember it. Even his first name is longer than Yoshi. I have it at home. I’ve communicated with him a little bit. I saw him when I went to Japan.

6-01:36:26 Hershey: Would you like to take a little break here?

Smith: Yes, yes, yes.

Interview # 3 October 7, 2008

Begin Audio file 7 Eleanor Smith

7-00:00:01 Hershey: Hi, this is Laura Hershey, we are back here with Eleanor Smith, today is Tuesday, October 7, 2008. And we’re here in my home in Englewood, Colorado. Eleanor, yesterday when we left off speaking, we had talked about a lot of the advocacy you did around accessible building standards, and that you had adopted the term “visitability” to talk about new construction basic access features. You had also talked about the Atlanta ordinance, which was the first law in the world requiring zero-step entrances and wide doors in private single family houses that had any type of government money. So, should we go ahead now and talk about how your efforts there expanded first to the state level, and then nationwide? I understand that you did campaign for other ordinances in Georgia, throughout part of the 1990s?

Smith: That’s right. We kept to our message, new construction only, just a few basic features, but those features had to be there. You couldn’t say, “Well, we won’t put a zero-step on; we’ll fix it so you could have a zero-step later.” We stayed with few, but crucial, and we thought of them as the ones that had to be in place for someone to come home from the hospital.

7-00:01:50 Hershey: Can we just reiterate those basic features?

Smith: We said one zero-step entrance, back,side or front. Thirty-two inch clear interior doors, including the bathroom, because that’s usually the narrowest passage door and at least a half-bath on the main floor. One of my colleagues said, “You mean get in and pee?” And I said, “Well, that could be about the shortest way you could say it, yes.” We had that on our website for a while. So we took that message that had already been present in the Habitat initative in Atlanta and in the successful city ordinance, and we said, “Let’s try to take it statewide.” Take the same principle as the city ordinance statewide. We found a representative named Jim Martin who was progressive, also had respect in the Georgia House of Representatives. Showed him the video which we had made, called Building Better Neighborhoods, which we had really been sending around the country as advocates heard about it. And he was interested. It turned out by the way, later, that he had recovered from polio as a kid. So, he did have a feel for it. And he took the bill, and we tried it in various incarnations. One year we would try to take the city ordinance and more or less replicate it statewide. Another year, we called it the bathroom door bill, and only tried to impact one thing only, new bathroom doors throughout Georgia, which, you know, have such a huge impact on people’s lives. But we were always defeated very, very roundly and easily by

essentially the Home Builders Association lobbyist, and that woman would go hand in glove with the Realtors lobbyist, and they had no trouble quashing our bills, not with logic and not with facts, but with overestimates of cost, underestimates of need—with great confidence, because they gave tremendous amounts of money to the law makers for re-election. So, we did not have a chance. But I will say this, I believe that during that time we did raise consciousness. We did at least in the defeat, at least our arguments were out there for the public to see.

7-00:04:39 Hershey: Can you give examples of some of the hearts and minds that you won over? Or were there politicians or groups?

Smith: It varied, but I remember one liberal politician, you know a lot of disability thinkers have recognized that you can’t count on the left wing to get disability in the same way that they get other issues. That may have improved somewhat, but there certainly was a time when the progressives could understand racism, sexism, classism, and listen to all of that, and plug it in to their political consciousness, and then disability would just be a thing they didn’t get. They would see it as a personal misfortune, many thinkers have called attention to that, and I’ll give an example of—when we had one of our first bills, I went to a progressive legislator in Georgia. Shaved head, and his earring, and from a progressive district, one of the not-too-many in Georgia, and his name was Doug Teeper. I said, “Doug, we want your support on this bill.” He looked very shame-faced and uncomfortable, and he said, “You know, I just can’t support that, I just can’t support dictating how people’s houses are built. It just seems too much to me.” So we were disappointed.

The next year, he stopped me in the hall, because we were there with another bill. He said, “You know what? I’ve come to see what you’re talking about.” I said, “Oh, what do you mean?” He said, “Well, my dad had a stroke,” and he said, “We were invited to an important family wedding, and we tried to get him there, and we just had a terrible time. And you know, we couldn’t find the right motel for him.” But I believe he said that one of the events was held in a home, and they really saw how inaccessible houses were, and how it impacted his dad, and he just had that personal experience. But I think that what was different about our presentation, important about our political work, prior to our having lobbied for that bill, Doug Teeper might have looked at his dad unable to get through a door and said, “ Oh gosh, poor dad can’t get through the door.” And hopefully, we had helped him frame that differently. “Oh gosh, the door isn’t wide enough for dad to get through.” It’s a huge difference.

And that is the insight that we hope people will keep getting, as they stop thinking about access as the weather, as I did for years, and start thinking about access as a series of decisions that real people make and can be held accountable for, particularly when they continue to make the same decision, after they’ve been told about options to do differently for not much money.

So, I think we will win out in the end, because it makes so much sense. What we’re [building] hurts so many people. We are bailing out a boat by trying to renovate houses, and we are building new leaky boats by the hundreds and thousands, and eventually the illogic of that is going to take hold. So during those years, we were fighting down at the legislature and losing, I do believe, and I hope I’m not being Pollyanna, that we were planting seeds—I know I’m not. I know we were planting seeds for increased consciousness.

7-00:08:33 Hershey: And besides Let’s Get Together and Lesbian Feminist Concrete Change, or if the group Concrete Change was still a group by then, who else was advocating for those bills?

Smith: Well it was happening around the country.

7-00:08:48 Hershey: But I mean within Georgia, who were your allies?

Smith: Oh, let’s see. Sometimes, certainly the Independent Living Council, the Statewide Independent Living Council of Georgia. Actually, the Developmental Disabilities Council. I don’t think they’re always real helpful in every state, I don’t know, but in Georgia, their main lobbyist was working very hard for us. That was very helpful. We couldn’t have been down at the legislature without the DD Council having assigned their experienced lobbyist to take up a large part of the visitability battle, because we had very little money and almost no staff, and we still don’t.

7-00:09:36 Hershey: So this was during, according to this timeline that you gave me, 1993 through ’98, with the different versions of the bill in Georgia, right?

Smith: That’s right, and then—

7-00:09:48 Hershey: And was it like four or five different times it was—?

Smith: Yes, it was four or five different years.

7-00:09:54 Hershey: Okay, and then 1999 was when Disability Rights Action Coalition for Housing formed, and then advocated with HUD secretary Cisneros, and that was victorious in the sense that he put the visitability requirement in that Hope IV application, right?

Smith: Hope VI.

7-00:10:16 Hershey: Hope VI, I’m sorry.

Smith: Right. Hope VI projects were and are going around the country, where local housing authorities would receive large amounts of money for private-public partnerships to tear down old developments where only poor people lived, and replace them with mixed income.

7-00:10:45 Hershey: So he added the visitability requirement to those developments?

Smith: Actually not a requirement, only a point.

7-00:10:51 Hershey: A point, okay.

Smith: But I learned that the competition for the money was so intense that I believe over 85 percent of the applications, and I think I’m understating it, asked for the point. So, it almost became like—in practice it became close to a requirement. And it has resulted in far more townhouses and single family houses having access than did formerly, but still a small amount when you think about all the building that’s going on.

7-00:11:28 Hershey: And then, in 2000, Concrete Change started working—was it that you got funding? From SUNY, the State University of New York at Buffalo?

Smith: Right.

7-00:11:43 Hershey: Can you talk about that?

Smith: Yeah, that was interesting. All this time, the history of this movement is the history of advocates, grassroots. And not just in Georgia, because during that same period of time, people were looking at the Concrete Change website—

7-00:12:03 Hershey: When did you first put up a website, do you remember?

Smith: I think that was ’98. People were ordering our Building Better Neighborhoods videos; we sold a lot of them. We made that in ’94—

7-00:12:15 Hershey: And, I’m sorry, just let me ask two things about that. How did you get that video made and how long was it?

Smith: We made it fifteen minutes long, we made it for the unbelievably low price of $1,500. It was not tip-top technically, you may be sure, but the message was, very clear. For one thing, we got some footage from a woman who had wanted to make a PBS movie, and she had shot some Concrete Change footage, very high quality. and when PBS didn’t go ahead and buy her movie, she allowed us to use some of it. And then, the rest, I just hired a videographer

who wasn’t very experienced, and we went around and shot according to a script I had written, and it got the basic idea out, and we kept it to fifteen minutes long. Mark Johnson was in it, Pat Puckett was in it, a lot of my friends were in it. A little twelve year old girl was in it who had a disability. We just sent the visitability message out.

7-00:13:27 Hershey: About how many of those would you say you distributed? Do you have any idea?

Smith: I think we probably sold, somewhere between 2,000 and 2,500, and they went a lot of places. So when one was sold, it was shown maybe to anywhere from ten to two-hundred people by each person who bought it. It went to Guam, a few of them. We were always happy when a few went overseas. They really helped spread the word, quite a lot of people saw it. And our booklet sold as well, Entryways. So people were getting the idea across the country, and when I say people, I’m talking mostly people with disabilties and their immediate allies; because the universal design movement was occuring at roughly the same time, and we had no knowledge of each other in the first years.

7-00:14:23 Hershey: Why do you think that is?

Smith: Because the universal design movement started in universities, and among professionals, and the grassroots movement started among disabled people, and we were not reading each other’s periodicals. And so for at least, I would say the first three years of our existence, we didn’t know about universal design and universal design did not know about visitability.

7-00:14:51 Hershey: And did that change when you started working with the IDeA Center at Buffalo?

Smith: It had already started somewhat before that; there was a little tension between those two movements, which I don’t need to go into; not because it’s so horrible as it is that I’m working not to take too much time. [In the first years] all of my phone calls and letters and possibly emails by that time, were from advocates at centers for independent living and so on. “Can we get your video? How do you do x? How do you advocate?” And sometimes they would be from [isolated] people with disabilities [not connected to any organization] or grassroots advocates. So, I get this email from a university, Dr. Ed Steinfeld, who I’ve never heard of, at State University of New York, who says, “Could we exchange videos with you? We would like to give you our video on universal design bathrooms and have you send us your video on entryways.” So I wrote back, “Well, you know what? We don’t give away our video, that’s the only way we make money. You probably have a secretary. We have none!” So I said, “If you want to buy the video that would be good,

but no exchange, thanks.” So he writes back, “Okay, we’ll buy your video,” and I sent it to him.

He realized that this idea had legs. I think by then, yes, by then HUD had talked about visitability on their website, compliments of DRACH [Disabled Rights Action Coalition for Housing] and Henry Cisneros. HUD was literally talking visitability on their website. So, Ed Steinfeld was really the first one [in academe and the UD movement] who recognized, “Hey, this is a happening thing!” And he folded it in to one of his big applications for money from the Department of Education. He called us on the phone and asked me and Pat, Pat Puckett, if we wanted to partner with him; and we had a phone conversation where we cut a deal where Concrete Change would get some money and he would be able to say that he was doing visitability in his application. So was the beginning of that; it’s still occurring.

7-00:17:27 Hershey: That partnership is still in place?

Smith: It is. Actually, to his credit, the next big five year cycle, he and I together tried to get a large amount of money for the housing push; because we thought it was—we honestly thought it was the most—extremely important thing to occur in the United States [in terms of construction]. The last piece of the built environment that was woefully, woefully inaccessible, with tremendous negative fallout on people and very easy ways to not do that. So we wrote a beautiful application, which unfortunately, NIDRR [The National Institute on Disability and Rehabilitation Research , a part of the U.S. Department of Education] turned down.

7-00:18:20 Hershey: So that was what, like 2005?

Smith: No, it was earlier than that, slightly earlier. I guess it was in preparation for 2005; I’ve lost my dates a little bit there.

7-00:18:31 Hershey: Okay, so this first grant that you got through then in 2000, that gave Concrete Change probably more money than it had before.

Smith: Absolutely, it was something like $20,000—25,000 for the year.

7-00:18:45 Hershey: And how did that change what you were able to do?

Smith: It did, we had almost no money before. I was working for no money, you know, expenses only. It let us travel more, it let us go to more conferences, it let me have a half-time employee. [pause] The employee made a huge difference. Barbara [Rose] now works for Concrete Change. And if I did not have Barbara, I would not get nearly as much done,you know, with zero

employee and my rather limited energy. So that allows me to have a half-time employee and get a little money for myself, not much, but some, and it allows us to go—we get asked to go present some places and get our expenses paid, but other places, where we’re going to go bug them, so to speak, they don’t pay our way. If we’re going to go bug the Congress for the New Urbanism, and we manage to get on the program, they’re certainly not paying us to be there when we’re there to tell them, “What you’re doing has negative impact, go do this.”

7-00:20:15 Hershey: So then around this time, after you were able to start doing more outreach, more traveling—it sounds like more local groups—and after you had distributed so many of your videos, local groups around the country were starting to advocate for visitability ordinances?

Smith: Absolutely. A lot of them I knew about, because they would call up and ask for guidance. And they would use the website, and still do tremendously, but it only would happen in these places, because a local person would really get it and would decide that they had the energy to press for it. Some were unsuccessful, they tried very hard, their bill didn’t pass; but I still say they planted the seeds. Others had quite a lot of success, striking success to where—two advocates, a husband and wife team from Arizona, got through the first law that covered all the houses, whether public money was in it or not.

7-00:21:28 Hershey: And was this Bill and Collette Altaffer?

Smith: Right, in Arizona

7-00:21:33 Hershey: In Pima County, Arizona?

Smith: Pima County, which is the county surrounding the city of Tuscon.

7-00:21:39 Hershey: And so it was a law, but a county ordinance?

Smith: Yes, a county ordinance.

7-00:21:45 Hershey: And it mandated every new house with basic access?

Smith: Every new house.

7-00:21:49 Hershey: Regardless of the funding source?

Smith: Regardless of the funding source, with a caveat that if your lot made it impossible, you wouldn’t have to do that, but I want to say that because of the various ways you can put a zero-step entrance on a new house, the places that have had ordinances are able to do this in 95 percent of the lots. And where you can’t, you shouldn’t; the exception is there for a reason. There are certain lots you can’t do it on, but steepness is certainly not the test, you can do it on a steep lot usually.

7-00:22:29 Hershey: So Pima County, Arizona was one of the first after Atlanta?

Smith: Well, Atlanta didn’t have every new house accessible.

7-00:22:37 Hershey: Right, but I mean in terms of any visitablity—

Smith: No, [some] other ordinances came along that didn’t impact every new house. Austin followed up Atlanta. It took six years. Atlanta was 1992. Austin came along in 1998, six years later, and was the next successful one.

7-00:22:57 Hershey: And who was behind that? ADAPT?

Smith: Yes, ADAPT. What Austin had done is found out their city was violating I believe 504, sued them successfully, and made, virtually replicating the Atlanta ordinance part of the lawsuit settlement.

7-00:23:17 Hershey: So that was the leverage that they used.

Smith: They did, and they have close to 3,000 houses up now.

7-00:23:24 Hershey: Really? And then what about this Pima County one? Are you aware of what impact that’s had?

Smith: Impact? Yes, Pima County has probably resulted in fifteen to sixteen visitable houses.

7-00:23:38 Hershey: Fifteen to sixteen?

Smith: Thousand, excuse me. Yeah, 15 to 16,000; and it was a fascinating effort. It was fascinating for one reason, because they did not tell me they were doing it until they were almost done.

7-00:23:51 Hershey: So you didn’t know these people.

Smith: I didn’t know them from Adam. And I was—I grinned from ear to ear.

7-00:24:00 Hershey: Were they getting information from you?

Smith: From the website. And finally, they did ask for some assistance, but I thought, thank God, no. It didn’t come from me. Some people out there just went out there and hacked their way through.

7-00:24:15 Hershey: Why do you think they were able to be so successful and get an even stronger ordinance requiring it in all new houses? Something about the Tuscon culture, or the number of retirees, or what?

Smith: I think that had something to do with it, something to do with the time in history. It certainly would not have been possible ten years earlier. Something about the fact that they kept emphasizing the aging population. Something about the fact that Bill Altaffer was a lawyer and his wife Collette, equally brilliant, and very, very persistent.

7-00:24:53 Hershey: And were they people with disabilities?

Smith: He has a disability, she does not. He may have muscular dystrophy, They worked very, very hard and very, very smart. And even with all their work, it just sqeaked by, with a five to four vote. Interestingly, they were fought every step of the way by the Home Builders Association, including being sued. When their ordinance succeeded, it was sued.

7-00:25:31 Hershey: The county was sued?

Smith: Yes. The validity of the ordinance was sued, first by a conservative group out of Denver, Colorado, some kind of national group, in conjunction no doubt with NAHB [National Association of Home Builders], calling it unconstitutional, violating personal rights, and so on. The state of Arizona ruled that Colorado had no jurisdiction on what went on in Arizona. By the way, the lawsuit was filed just a couple days before the ordinance was to take effect, and part of the lawsuit was to ask that while the suit was going on, the builders wouldn’t have to apply the access features. Thank goodness, the court said, we won’t go along with that, you must start applying the access features immediately, as the law says. So when the builders lost the lawsuit out of Colorado, they then sued again, locally. This was really hard on the advocates, but the county attorneys helped the advocates.

One reason the law did pass was that there was some significant support among some of the county officials, or it wouldn’t have passed in the first place, and the county attorney fought for the law, and the ordinance prevailed in a conservative state like Arizona. So, what could have been a very bad blow to the visitability movement, namely losing a lawsuit and being declared

unconstitutional and a number of other things, actually became in a way, a good thing, in that it established case law. However, I must say that not enough people know about the lawsuit, and so in some jurisdictions, the builders are dangling the possibility of a lawsuit over some of the locals at times. And the locals don’t know that such a move has been successfully beaten back.

7-00:28:07 Hershey: So besides Austin and Pima County, what were some of the other places around the country that successfully advocated for visitability?

Smith: Kansas had a state law, that Becca Vaughn fought hard for, a DRACH member.

7-00:28:23 Hershey: And do you remember when that passed?

Smith: No, I’m not going to be able to come up too well with dates.

7-00:28:28 Hershey: Okay, and did that require—what were the requirements there?

Smith: It required the basic access features, but in a rather narrow definition of what triggered the law. [It included some good, specific requirements for access features in renovations, setting out criteria where that would be possible.] So, the state laws, which are existing in Texas, Kansas, Georgia, have resulted in some houses—

7-00:28:54 Hershey: Wait, you now have a Georgia state law?

Smith: Yeah, we do. But it—occurred after I stopped my efforts. It passed in, I believe, 2000. But the type of funding that triggers the law is even narrower than the Atlanta ordinance. So I’m glad of it, but it doesn’t result in a lot of houses. We drafted a law last year, we’re back at it. Every new house in Georgia on a concrete slab, which is more than half the new houses in Georgia. So that’s what we drafted last year, and we’ll fight for it this year.

7-00:29:44 Hershey: Okay, so there was those state laws, do you want to remark anything else about those?

Smith: No, except to say that Urbana, Illinois passed a early visitability law.

7-00:30:01 Hershey: Right, and were you working with them too?

Smith: Yes, I was working with—

7-00:30:06 Hershey: The advocates there?

Smith: Right.

7-00:30:06 Hershey: Do you remember who that was?

Smith: I—it’s usually on the tip of my tongue, a husband and wife team, very good people.

7-00:30:14 Hershey: I think I know who you mean, I think I met them—

Smith: I forget their name right now [Lester and Barbara Pritchard]—

7-00:30:19 Hershey: And also Bolingbrook, Illinois, it says here?

Smith: Right, Bolingbrook, Illinois. All of these were going on without knowledge of each other.

7-00:30:26 Hershey: Uh huh, but they were contacting you—in those cases—

Smith: Right, Bolingbrook, Illinois contacted me early on, again, in a way that came from me in a sense, but also through DRACH, because Bolingbrook is near Chicago and an advocate there named Edward Bannister, back I guess in the late nineties, heard Karen Tamley speak about visitability, and he got inspired by it and took it back to Bolingbrook, spoke to city officials, the mayor there—then the most proactive mayor in the United States [on visitability]. He got it and he fought for it. Edward showed the—his primary tool was probably the Building Better Neighborhoods video and he educated a lot of people using that. He had me on a conference call with city fathers, where I was able to get a Habitat construction engineer to come on the phone and tell them that, yes it’s possible, and answer some of the technical questions. Edward was steadfast, and the mayor there was amazing. Every new house in Bolingbrook, Illinois.

What was particularly gratifying about that is, when we had had some successes in Texas and Arizona and Georgia, we were always told, “Well down there you build on a concrete slab, but up north, they build on a basement, and it would cost thousands and thousands of dollars to do it over a basement, and it wouldn’t look good. So, it’s just out of the question to have that happen.” Bolingbrook absolutely contradicted that. They build almost every house over a basement. They have used the method to create the zero- step entrance, not with a ramp, but [setting the flooring system on a notch in the concrete foundation, to keep the dirt away from the wood, and then using] what is called a landscape ramp, meaning you grade the earth just to come up

and meet the porch, like you do on a concrete slab. So very few of these new houses have a ramp per se as we think of it, they simply use the dirt, the earth, in an intelligent manner. So all these houses going up in Bolingbrook, in snowy country where we were also told that it’s harder in snowy country, kind of stand as monuments—If they can do it here, why can they not do it anywhere? They have around 3,000 houses up.

7-00:33:14 Hershey: Do you think visitable houses?

Smith: Right. And the mayor is a big advocate for it.

7-00:33:20 Hershey: It says here his name is mayor Roger Claar? C-l-a-a-r?

Smith: C-l-a-a-r, Claar, yes. He’s unique, and now he gets dozens and dozens of calls from around the country, asking him how he did it.

7-00:33:36 Hershey: Really, he’s still mayor there?

Smith: He’s still mayor, he’s very popular.

7-00:33:38 Hershey: What about the Urbana ordinance, was that, that was like tax-payer funded houses?

Smith: Yes, yes. It was—

7-00:33:52 Hershey: So Bolingbrook and Pima County were the only ones with every new house.

Smith: Yes, except that in October 2007, the same advocates and their allies were able to get Tuscon then to join with Pima County. So that’s good, that’s certainly the largest municipality. And they said their battle was less intense than it had been with the county, because the city was now ringed with thousands of visitable houses [built earlier under the county ordinance]. Bill also said that they are having to do a lot of retrofitting—the city and the county I guess are having to do a good bit of retrofitting of the old houses [for residents who’ve developed disabilities], and it’s starting to make the message more vivid.

7-00:34:44 Hershey: So since that time, since [1998 in Austin] was the first other than the Atlanta, do you know how many United States cities or counties or municipalities have passed some version of a visitability law or ordinance?

Smith: Well, around sixty. State University of New York keeps track of all of them, on their website, on the IDeA Center website.

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7-00:35:14 Hershey: So about sixty so far?

Smith: Right, but they vary in usefulness. Some of them are only to educate, where the builder must give a flier offering these features to the buyer. And in my view, those have not yielded houses. They have not been particularly effective.

7-00:35:35 Hershey: So do you have any guess or estimate as to how—do all these sixty, among all these sixty ordinances or laws, how many new visitable homes have been built as a result of those?

Smith: By this time I would say conservatively 35,000. So, it’s certainly enough to be a testament to the fact that it can be done.

7-00:36:04 Hershey: Right. Is there any type of pattern, in your view, of the types of places that were able to pass visitability ordinances? It is a function of culture, geography, or just like local advocates who happen to take an interest?

Smith: It is not predictable, I wish it were. The pattern I have seen is that a couple of local people get the vision, and they build a little coalition around them; and the other key part is, they find a couple of politicians willing to go the distance with them. Without that, it’s not going to happen. You really can’t say “urban/rural,” you can’t even say “Republican/Democrat”. I mean, Roger Claar is a Republican. So I wish there were some formula, but I just have to continue to be pleased with the way it’s spreading. It certainly is gaining momentum.

7-00:37:32 Hershey: It sounds like it. So you've also worked with a visitability group in Canada.

Smith: Yes.

7-00:37:41 Hershey: Can we talk about that?

Smith: A woman named Laurie Ringaert works in Canada and the United States; she’s a native Canadian. She was the director of the Center for Universal Design for a while, and she’s a very—she has a lot of heart and a lot of energy, and she got interested in visitability and contacted me. We’ve known each other for a good number of years. She has lots of work in Canada, as well as having had some in the United States. She and her husband actually live now in North Carolina, but she has a major contract right at this time in British Columbia, and has previously had contact with the Canadian Centre [on Disability Studes] for—I should be remembering that name, and I’ll try to fill it in later, based in Manitoba, where a major disability organization exists, that used to do international conferences on disability. And because Laurie

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was interested in visitability, she brought that idea up there, to Winnipeg, and they held a conference that I went to and consulted for, and they were able to get the mayor of Bolingbrook to come up and give the keynote speech. And since then, Canada has a visitability website. Laurie has a new project going on in British Columbia, where she has championed visitability among the local small towns. And actually, it’s part of a national agenda as well. So I continue to work with them, I think that it has a lot of potential in Canada.

7-00:40:01 Hershey: Have they gotten any visitability laws or ordinances passed there?

Smith: Not really, not yet, no. It’s going kind of project by project. They operate somewhat differently than the United States does. I’m having a guess, that when it occurs there, and this is a guess just based on what a few people have told me, it will tend to be top-down in a big ADA [Americans with Disabilities Act] type package, that will be broader; whereas ours has bubbled up from grassroots action very scattered. Theirs may be more of a national set of standards.

7-00:40:56 Hershey: So back to the US—I just want to make sure that I give you a chance to really articulate a little bit more the principle, and how you developed the principles around basic access and visitability. It is very different from either universal design or from like, designated accessible housing for people with disabilties. Did you really have to—Do want to talk about that, and whether that philosophy has been challenged, or how you came to clarify it so specifically? Is that too broad of a question?

Smith: No, I think I could think about that. The zero-step entrance and the wide enough doors, and the assumption of a bathroom on the main, at least a half bath, were clear to me from the beginning; and that hasn’t changed. I would change it if there were reason to. But it has stood in good stead. Sometimes people add a couple of other virtually no-cost features, for example, even the Atlanta ordinance did. It had that the plug-ins would be in the proper place, not down around the baseboard, that there would be lever handles, and that there would be blocking in the walls for the later placement of grab-bars if needed. And then it stopped right there. I think that the features grew out of my personal desperation, and my personal realization that if those two things [—the entrance and the interior door widths—] had been in place, I and most of the people I knew, would have been able to be at the party and be at the family reunion. [And they provide the basic shell not just for visiting but for living in the house if a disability develops.] That those were the biggies, and that they weren’t everything that every disabled person needed by a longshot. They certainly weren’t the roll-in shower and the lowered cabinets, but they were on the hierarchy level, up there with food and water as a need, in terms of access. And that without it, you absolutely did not have access, you had misery, and with it, you had a fair amount of access. We realized that it was

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extremely important not to negatively impact affordability. Affordability is a key disability issue, and if you had a whole lot of features [you were trying to get into every new house], clearly, it would drive the cost up.

7-00:43:54 Hershey: And did you have to fend off other advocates and allies who wanted to say, well let’s also add lowered counters or—?

Smith: Oh, yes. Yes I have; right along with being told by virtually the general public and the Home Builders that my features were impossible to put in, and being fought on that level, there were some people who were saying, “These features are way not enough; they’re just asking for crumbs; where is the roll- in shower? Where is the high toilet? Where are the lowered cabinets? Where is the philosophy of universal design?” And I’ve either felt patient or impatient with that, depending on the day. It was like, okay, A) It’s not right to impact affordability in a negative way; B) A long list of features does not pass. Go pass the bill you want to see, and then come back and tell me how you did it. I say that on my most impatient days. And that brings us back to the debate with universal design. A lot of universal design and visitability workers have come together now, which is wonderful, but my initial impatience with universal design is that it didn’t highly prioritize the features. They might have the word “lever handles” six features up from the word “no step entrance.”

7-00:45:40 Hershey: Oh, so it didn’t prioritize—

Smith: It did not prioritize, nor was there the sense of urgency behind it that the advocates showed. It tended to be more philosophical. [In fact, one of the hard things about my work is managing the anger I feel at people, usually non- disabled people, who make a living off of supposedly addressing disabled people’s access issues, and then they are casual about doing what needs to be done. Who decline to feel the extent of the damage the barriers do to people’s lives. I get angry when I find out what some of them are spending time on, spending public money on. It’s a hard task to feel the anger and at the same time not get stuck in it.] As a philosophy, I think [UD] is strong, you know, build designs that work for everyone. Ron Mace, a disabled guy, is the guy who came up with the term. And so, on the one hand, if you look from a distance, these are sister concepts. And then on the other hand, the differences need to be highlighted. [Ron himself was pro-legislation, he let his name and phone number be listed on our handouts for the Visitability bills in the 90’s.] I always think now as the visitability features as being key universal design features.

7-00:46:32 Hershey: Right, but they’re the highest priority universal design features.

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Smith: Exactly. They are features that could be affordably put in in the lowest cost housing in Africa, Asia, Mexico. They are doable everywhere from a very low cost house up to a mansion. Speaking of mansions, you know, these parades of homes, back when we went on a parade of homes, or rather, sent our advanced operatives to one, where there were six homes. All of them terribly lacking in access, very, very expensive, bathrooms with wood-burning fireplaces inside the bathroom, and narrow bathroom doors. So, prioritizing the features that impact people’s lives the strongest, for good or for ill, [by their presence or absence,] is what drove Concrete Change. I feel that this piece was the right piece for me, it fit me. It was a big vision, but it was not some even higher visions that other people seem to have. It just fit.

But in terms of higher visions, ultimately, I can envision a world where if a person gave birth to a disabled child, that child could really be welcomed, and that parent would be able to feel, wow, I have a different kid. Now, the only people who can feel that are extraordinary people, with extraordinary hearts. But if supports were in place, that families were not punished by not having enough help, and the attitudes were not out there, oh your child is a pitiable loser, people actually could be as happy—could be happy having a disabled child, without having to have heroic hearts and minds. And that’s what I would like to see. It’s not going to be in our time, but we’re closer than we were, and I see visitability as also one piece of that happening. Does that make sense?

7-00:49:20 Hershey: It does, yes. And how do you see visitability relating to living—I mean visiting other people is one aspect of visitability, but you also have been talking about aging in place and senior-friendly housing.

Smith: Exactly. I mean visitability is a two-edged sword in terms of a word, it’s useful and it has its dangers. When it first came to me from Yoshi it was a perfect word because most people who we spoke to would misunderstand what we were talking about, even when we articulated it. They would look back at us and say, “Yes, we do need more housing for the handicapped.” I think I said that earlier. They literally could not hear, and still have difficulty hearing, that this is not about more housing for the handicapped, it is about a different way of building all houses. Not that I’m against that small percent with more features. I am strongly for it. But—what did you ask? I just lost the thread.

7-00:50:34 Hershey: Just how visitability relates to the idea of aging in place.

Smith: Okay. So, when visitability came along, it reiterated, this is not just about a disabled person’s house. It’s about other people’s houses as well. They may visit, and actually, being cut off socially is one of the worst things that happens when people develop a severe mobility impairment. So visiting

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matters. The problem with the word is it doesn’t give full credit to the other side of what is gained by putting these features in, which is that the building blocks for remaining in the home, or living in the home with a disability, are already there. Personally speaking, if wide enough doors and a zero-step entrance had been in every house, that’s all I needed when I was a buff paraplegic. I’m less buff and I need a little more now, but I mean I could have lived the first fifty years of my life, if only those features had been in place.

So, that’s the problem with the word visitability, and in fact, that is one of the reasons the advocates in Pima County did not contact me. They didn’t want to use the word visitability; they called it “inclusive home design,” because they wanted to say how the old people there could stay in their houses longer. They were a little worried that I wouldn’t like the term, and in fact, I loved the term, and I lobbied for that to be the name of the Inclusive Home Design Act, federally. So visitability offers people the ability to be part of the human community and go next door, and take a casserole to someone who has had a new baby. And it allows people to go next door and play Scrabble. And it allows people, when they fly into Philadelphia, where their sister lives, to be there in her house, rather than the only family member who is staying at a motel. Visitability matters.

But it’s also true that the way we’re building houses now, that is no access, kicks people into nursing homes, does not allow people to age in place, does not allow many people to come home from the hospital. That is a contributing factor, not the only reason, that 60 percent of the people who reside in nursing homes go into the nursing home directly from a hospital or rehab facility, 60 percent. Those statistics were popularized by Steve Gold, lawyer for ADAPT. He sends out these bulletins, and one of his bulletins had that piece of information, 60 percent. That suggests to me that a great many of those peope had mobility impairments, because you do not go to the hospital for dementia, blindness, or deafness. At least not if that’s your sole diagnosis. The research about exactly how many of those people were impacted by the lack of home access has not been done yet, but please, don’t let’s wait for the research project to start connecting the dots.

7-00:54:14 Hershey: Right. And so it sounds like ADAPT is now very much connecting those dots between nursing homes and community support services and accessible housing, because as you mentioned yesterday, that at this last ADAPT action in Washington DC in September of 2008, there was a—well can you talk about the part of their agenda related to accessible housing?

Smith: Well they set up their tent city on the grounds of HUD, and they called it DUH, which is HUD spelled backwards, and they had a printed multi-faceted housing agenda, and one of the twelve points, or maybe more, was supporting the Inclusive Home Design Act. I was very glad to see it, as I said earlier. So—

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7-00:55:22 Hershey: And when was that act—is that just being introduced in this current Congress?

Smith: No, that act has been introduced at least three times.

7-00:55:33 Hershey: Who are the current sponsors, do you know?

Smith: Jan Schakowsky is the originator. It has not gotten up the full head of steam that it will get up, because it just hasn’t yet.

7-00:55:43 Hershey: And what would it do?

Smith: Our current federal law says if there is any federal money in a housing development project—keep in mind, it doesn’t mean only built with federal funds, it means any federal money in it. So that includes for example, CBDG [Community Block Development Grant] money, which is used in private housing very often. Our current law says if there is any public money in housing developments, 5 percent of the units have to have full access. 5 percent of the units not covered by fair housing, which would be town houses and single family houses and duplexes. That means that the government is paying for 95 percent new townhouses to have zero access, 95 percent new government assisted, private, single family homes, or public single family homes, no access. The Inclusive Home Design Act says that the 5 percent with full access would be maintained, and the remaining 95 percent would have visitability features, with a [few] extra [features], actually. It [also] has some features in it that affect townhouses. So, it would be a terrific thing, because even though it isn’t every house in America, which I wish I could push a button, it would be so widespread if properly written and properly applied, that in every state in every county, you would see examples right in front of your face. And the examples help diffuse the myths about how difficult or expensive, or funny looking it is. So it’s a good bill, and I hope that it gains steam.

7-00:57:53 Hershey: So let’s talk a little bit more about those myths and about the opposition that Concrete Change and its advocates have encountered. Do you want to talk anymore about that or—

Smith: Sure.

7-00:58:08 Hershey: Do you feel that we covered that?

Smith: Right. I learned about these myths one by one as they were used to shoot us down over the years. And this certainly wouldn’t be the complete list, but a lot of them are, you have to have to have a flat lot or you can’t do it; that’s completety erroneous, because you can do it very well on a steep lot, by using

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the driveway as your ramp so to speak, and coming over from the driveway. So you don’t have to have a flat lot. Amazingly, a lot of people say, even builders, “Well, water will run in the house, moisture will impact the house.” Whereas you can say, “If moisture does not impact the new bank and the new Dairy Queen; with proper engineering, moisture will not impact a visitable house.” Those are two—And expense, of course, that it’s very costly. Many false pieces of information put out,for example, that a wide enough door costs $100 extra; when in fact, it’s true that the 2-10 door is not stocked in Home Depot, because it’s not common in home [renovation], because [hardly any] existing houses have them. But, that’s not where builders buy their doors. They buy their doors through wholesale companies, where the doors cost two dollars more per door. And so, it’s been demonstrated now by these 35,000 houses across the country, that our new construction, the cost is low. But it’s still being put out by builders and assumed by some others that it costs, you know, thousands of dollars, very erroneous. In fact, whenever I talk about cost now, I never talk about the low cost without talking about the high cost of not doing it. I used to just not put those hand in hand, and now I do.

So I always talk about the high cost of building as we are, having to do with retrofits and institutionalization, and so on. And you know, another—I wouldn’t so much call it a myth as an objection. The objection that, “Don’t tell me how to build my house. My house is my castle.” And you know what, at first you think, oh my goodness, I wouldn’t want someone telling me that I couldn’t paint my house lime green. You know, I myself don’t want people telling me what some of the HOAs [homeowners’ associations] tell people about how their lawns must be clipped. But in reality, houses are not strictly a completely private entity. We have acknowledged that by our code now. You can’t just go in and say, “I’m doing my own wiring, because I had looked it up on the Internet.” You can’t just say, “I want to have 14-inch risers, because it works better in my narrow house.” You can only have a certain height of risers. Right now, too, you know, we’re having some green issues being mandated. So it’s already widely known that houses, in fact, are not strictly a individualistic decision, but how they are built impacts the public good. Existing law acknowledges that, and visitability is an extension of that.

7-01:01:40 Hershey: Do you see any hope for either winning over or neutralizing the Home Builders Association?

Smith: I don’t know. Why haven’t they already done this if it’s so inexpensive and helps people. I must say that there are a lot of prejudices out there that are held by the general public too. It’s not just the Home Builders Association. The general public will often, until they are educated, say, “I don’t want my house to look like a hospital. I don’t want people telling me how to build my house.” But they’re relatively easily persuaded in a lot of cases, except for the far right. I have received some interesting hate mail. Isn’t that weird? So, is there any hope for winning over the Home Builders Association? Maybe, but

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you know, they have many, many lobbyists on the state and national level who get paid for calling, “Fire! Fire! Fire! It’s awful, it’s awful. Without us, Home Builders, you’re going to down.” So they fan the flame of the—

7-01:02:58 Hershey: The lobbyists.

Smith: The lobbyists themselves fan the flame of the danger, and the employees. Someone else pointed that out to me in another industry. You know, that makes sense; they have to keep their job by stomping out fires, which means they have to call, “Fire! Fire!” constantly. “And also many of the home builders are, by nature, the people who go into that tend to be fairly conservative. You know, I used to subscribe to their national magazine and saw that they would print how many people voted Republican among their membership, and it was high. Like other big industries, they tend to hate regulation and say, “We’ll do it voluntarily.” But they love regulation when it’s to their advantage. Then all of the sudden, regulation is wonderful.

7-01:03:47 Hershey: Like what?

Smith: Financing that helps people buy a house; that’s government intervention right there. And other examples could be given as well, which I can’t think of at the moment. So, will the homeowners ever be won over?

7-01:04:12 Hershey: Home Builders.

Smith: Yeah, thank you. The thing about the Home Builders is, they are individuals too. Some of them may be wealthy, and they can redo their own house if they develop a disbaility. They’re builders, they can call on the contractor and get the house remade. But they will not be able to go out and redo the house of their best friend that they’ve played pinochle with for twenty years; they will not be able to go redo the house of their adult child. You know, you folks, too, are just as impacted by the inability to visit other people as the—almost as impacted as the lowest paid middle class person. So I hope that it will change, but as a society, we have a tremendous aversion to aging, a tremendous aversion to—in other words, ableism. Ableism is an unspoken force in the slowness of the visitability movement. The green movement has flown fast and it’s younger. Why is it flying so fast? I think that ableism plays a part in it, superstition.

7-01:05:37 Hershey: Is it in the lack of acceptance of the visitability?

Smith: Right. The lack of speed. So I guess—well, the more that we can frame it as, the universal design people are right about this, the more we can frame it as an

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amenity for all, the better. But I’m just enough of a disability rights fighter that I don’t want to strictly go with that.

7-01:06:09 Hershey: Speaking of—well you mentioned the aversion to aging, but earlier you said that there does seem to be some, you know, there’s some momentum building for visitability ordinances in the sense that more and more localities have them. Do you think the demographic reality of the aging baby boomers is related to that momentum? Do you think people are finally getting that it’s going to impact a huge number of people over the next few years?

Smith: I do. I think that people’s realization, the constant newspaper articles about the proportion of the population that is over fifty and over fifty-five, and then you project it in the year 2030 and 2050. It definitely is getting the ear; it is starting to make this issue make sense. Yes. Just in the summer issue of the Journal of the American Planning Association, an article appeared: “Aging and Disability Implications for the Housing Industry and Housing Policy in the United States.”

7-01:07:26 Hershey: And you co-authored that article, right?

Smith: I co-authored it with my brother.

7-01:07:33 Hershey: Yeah, so do you want to talk about that?

Smith: That was really fun.

7-01:07:37 Hershey: How it came about, and how it went?

Smith: For several years, I had a question in my mind: what is the likelihood that over the lifetime of the house itself, it would have a resident with a long-term severe mobility impairment? And my brother is a professional demographer, and he is the chairman of the Bureau of Business—I forget the exact name of his agency, I would remember it tomorrow when I had coffee—down at the University of Florida.

7-01:08:18 Hershey: And do you want to say your brother’s name again?

Smith: Stan Smith, my little brother.

7-01:08:21 Hershey: And just to bring it back to the earlier part of our interview, he’s your younger brother who?

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Smith: Right. Who we pinched each other, scratched each other and told stories by the fireplace. And our family, you know with its five siblings, when we get together with our extended family, we really don’t talk a lot about our work. We all have jobs, but we tend to just talk bull, and the old stories, and bore our partners, and be silly, and we sing hymns. We really don’t talk very deeply about what we do for work. My brother wrote a book, I didn’t read it, right? About demography. We all know what each other does, but that’s not our emphasis. So, they all knew I was doing visitability, and certainly took some interest in it, but not a great deal. Not to really look at the issues deeply, even though they care about me. So, I put this question to my brother, knowing that he was a statistician. His specialty is demographics. I put it to him a couple years ago and it didn’t take. He said, “Oh, interesting.” And so I put it to him again two years ago, I said, “Stan, figure out this question. Let’s address this.” And he bit that time. He probably had read a lot about the aging population statistics, not only read about them, generated some of them, for Florida. And he’s not so young himself anymore, probably sixty-two—just turned sixty- three, I sent him a card. And is a smart guy, and politically liberal, but also a stringent academician.

So we agreed we would try to write that together. He did a huge amount of research, reading articles on subjects he had never read, and I guided him to some extent. “Don’t read that Stan, it’s not going to help us.” So I helped him, and I wrote part of it, but he generated the statistics laboriously. It was much harder than he thought, much more complicated, lots of variables. I already knew what the broad variables would be, you know, how many people have disabilities, how many are projected to have disabilities, how long does a house last over time, how many families live in a house over time. I knew that those would be some of the key questions, but they’re more complicated than that. He was able to figure out how they were more complicated, and he had graduate assistants to help him run the numbers. And we wrote that together and it was a lot of fun. We would argue back and forth sometimes, and I would have to raise his disability consciousness on several occasions. For example, he kept wanting to use the market. “The market should do this, and the market needs to do that.” I said, “Stan, this can’t just be about the market. The market is not God. The market is not the only thing we have to look at for human good.” And he came up then with another word that is sometimes in the literature, demand. The demand. And that satisfied me and him both, because demand implies market, but it’s not the only player in the game. Need is a player in the game. Human improvement is a player. And demand, it was fun to come to that conclusion.

I said at some point, he quoted from another article I had written, that 98 percent of houses either have a [steps at the] entrance or a narrow door or both. He said, “Where did you get that figure?” And I said, “Well, I made it up, it’s obvious.” He said, “You cannot do that! That sentence must go!” [laughter] Out it went, and even though it’s true. On the visitability part, by the way, I talked him into keeping a section on that, even though we couldn’t

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generate really compelling statistics; well they’re compelling, but they’re not definitive and detailed. I still had him keep it in, and he was glad he did. But at one point he wrote, “Non-disabled people would like to invite disabled people to their homes.” I said, “Stan, you’ve also got to say disabled people would like to go to the houses of their friends and relatives.” And he said, “Well doesn’t the first say the second?” I said, “No! It’s all from the perspective of the able-bodied person. Boo hoo! I’m having a party, and I can’t invite my disabled friend!” I said, “What do you think it feels like to the person who can’t be invited? It’s even more—” We could talk that frankly to each other. And so, then the sentence [that appeared in the article] had that part in it. He did a great job. And he was so surprised with how high the figures were, even when conservatively run. By one measure of disability, 60 percent of every house built in 2000, of all the houses built in 2000, will have a resident with a long-term, severe mobility impairment [at some point during the lifetime of the house itself].

7-01:14:23 Hershey: Say the figure again?

Smith: 60 percent. By another measure of disability, which is more stringent, 25 percent. That’s the minimum; and that is taking a conservative stance all the way along. For example, the average house in USA lasts seventy-five to a hundred years, it serves as a dwelling. He went with the seventy-five for generating statistics. He was so surprised at the statistics.

7-01:14:59 Hershey: They are remarkable statistics.

Smith: They’re remarkable. He was so surprised that, [before we submitted the paper for publication], he presented them to other statisticians, and they said, “Yeah, it plays out.”

7-01:15:10 Hershey: And the article appeared in what issue of the Journal of the American Planning Association?

Smith: The summer issue, the current issue. There’s another one about to come out. And you know, he said, “Where shall we put it?” I chose that, the Journal of the American Planning Association, and they picked it immediately. He said it went through the process faster than any other major article he’s ever had processed.

7-01:15:34 Hershey: And what kinds of impact, or responses, or reactions came from that article?

Smith: Well, far less than he thought. He said he thought we would be swamped with media inquiries, we have not been.

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7-01:15:49 Hershey: Have you had any media inquiries?

Smith: Very little. Even though JAPA [Journal of American Planning Association] likes the article so well, that—first of all, it’s very difficult to get in JAPA; secondly, it was one of the long articles, not the short ones, so I think there were four long articles. And it was the one that they chose to make available to the public in entirety, right off the website. And with all that, he called me up a few days after the press release and said, “Have you had calls?” He said, “I’ve had far more minor articles that I got deluged with calls, and they wanted me to be on the radio and stuff.” This is a mystery to us. It has not generated much press at all, and even among disability magazines, nobody’s picked it up. I sent it in to Justice for All; it did not get picked up. The whys and the wherefores are a mystery to me. What do you think? [chuckle] Is it ableism?

7-01:17:04 Hershey: Is that what you think—is that what you attribute it to partly?

Smith: No, I just don’t know. I really, really don’t know. Is it that it’s people can’t quite believe it? Don’t really want to think about the implications? Yet, you know, articles about older drivers and how they can’t drive any more—So we’re a little mystified. We know that it is being sent around, it is being emailed one person to the next. It will certainly be footnoted and quoted in many a paper to come. But we would have liked to have seen it put out by the Associated Press, what these implications are. Another big publication was that AARP commissioned a paper on visitability, by name, about a year ago, and it finally came out; and it’s a long paper.

7-01:17:59 Hershey: This year?

Smith: Yeah, it came out in late August.

7-01:18:06 Hershey: And who authored that, or researched it? Anybody you know?

Smith: Me, for one, and Jordana Maisel of the State University of New York, and Ed Steinfeld from there; but Jordana and I wrote the majority of it.

7-01:18:30 Hershey: Okay, so you’re a co-author of that.

Smith: Right, I’m a co-author.

7-01:18:33 Hershey: And what was the focus of that? Was it similar to the JAPA article?

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Smith: No, it was—JAPA answered that very specific research question, whereas the AARP article was to give the definition of visitability, the history of housing law in the United States, chief barriers to visitability, progress of visitability, best practices—

7-01:19:06 Hershey: And has there been an impact or responses to that paper yet?

Smith: There will be more, I think—well, yeah, actually the AARP parlayed it into a major article in USA Today. It’s not out in booklet form yet. What I’m hoping is that, if Jan Schakowsky’s office and other legislators see it, that AARP will kind of have to come get their muscle behind the Inclusive Home Design Act. Because the article stated very clearly that when all is assessed, voluntary measures have not worked very well, and legislation and mandates is probably the way to go. The only thing I forgot to tell you, Laura, is when we failed down at the legislature quite a bit in the ‘90s, we thought, let’s try to have a seal of approval and do a voluntary program. Beto teases me about this, that I actually thought a voluntary program would work.

7-01:20:31 Hershey: Beto Barrera?

Smith: Yes. I put in years of work, [as part of a coalition], thinking that maybe something like a Good Housekeeping seal of approval voluntary effort would work. Years of work, into the Easy Living Home Program in Georgia, which the Home Builders had a great chance to say, “We’ll do it voluntarily.” They did not step forward in any kind of significant number over those eight years of effort.

7-01:21 Hershey: So you feel like that was a waste of effort?

Smith: A what? Yes, I would say that it was a waste of effort and even used against legislation. Predictably enough, but I didn’t predict it.

7-01:21:14 Hershey: Would you like to take a break now, and switch off the recording?

Smith: Yeah I think, I feel like I’m mostly done.

Begin Audio file 8 Eleanor Smith

8-00:00:04 Hershey: Okay, we are back after a little break. This is Laura Hershey and Eleanor Smith. It’s still October 8, 2008—no, it’s October 7. So Eleanor, I just wanted to follow up on one more question about Concrete Change. Early on you had gotten a commitment from the Atlanta chapter of Habitat for Humanity, to build—I think it was to build 800 accessible, or visitable homes?

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Smith: Well to build every house with access, and that has resulted so far in 800 or more.

8-00:00:43 Hershey: Okay, that’s right. And so, I’m just curious, like what role Habitat has had or played since then in terms of being an ally to Concrete Change or home building? You know, spreading that visitability idea more broadly than just Atlanta?

Smith: I have to say, not so much yet. Not as much as we would wish. The Habitat for Humanity National—or International—website does mention at one point that they recommend every new house to have access. But when you compare it to their pages and pages of green initiative, it’s just a drop in the bucket. I think that they have partnered with some federal funding having to do with green, whereas they have not received funding having to do with visitability. They certainly could do more. For example, they don’t track, they don’t know how many affiliates build with basic access; nor do they make it the priority that they could. It would be really great if they did; I would like to see Habitat for Humanity take the ball nationally and make it a priority even without necessarily federal funding, because it doesn’t have to be expensive to make a plea and a lot more education. So many volunteers build any one Habitat house. You know, any one Habitat house is often built by scores, and sometimes hundreds of volunteers on subsequent Saturdays, and if there could be, if the house could have access and there could be a flier that says, “Why does this house have access when the occupant doesn’t have a disability?” What an education that could be, just by the hundreds of thousands of people. So I would like to see national Habitat promote it more, far more than they do.

8-00:02:44 Hershey: Well in terms of the educational piece, I know that when I visited you in Atlanta, back in August of this year, you took me on a tour of one fairly recent Habitat development that had all visitable homes. And I know that you’ve taken other visitors on that same tour. Has that helped you in your, you know, spreading the word about visitability, having that model locally?

Smith: Yes, having that model helps. People really like to learn a lot from seeing an actual hands on, walk through the neighborhood example. And that particular neighborhood, which has forty-seven of the 800-some houses, has a variety of flat and hilly lots, which makes it interesting; and also builds some on a concrete slab and some on crawl spaces. So that makes a nice little example, but having to learn four by four by three, as I take people on tours, it’s going to be a little bit slow, unless we receive a great deal of assistance in spreading the word.

8-00:04:00 Hershey: How many people have you taken on that tour, do you think? Besides me?

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Smith: Mm, I would say, I’ve probably been out there ten to fifteen times to that neighborhood. And I’ve had a chance to take a commissioner of housing on a visitability tour and a number of people who have some decision making power; and I really do love to take people around.

8-00:04:25 Hershey: And it seems to have a real impact on people?

Smith: It does. Something about the way we’re wired, no matter how intelligent people are, sometimes, very often, it’s shocking to me, how often particularly on this issue, seeing actual houses seems to [be necessary to] tip the balance in comprehension.

8-00:04:49 Hershey: Yeah. So before we leave the whole history of Concrete Change, is there anything else that we haven’t covered sufficiently, or anything that you’d like to add?

Smith: Nothing comes to mind right now, I think we have hit the high points.

8-00:05:09 Hershey: So, I don’t want to neglect your activism in the Not Dead Yet movement. In fact I think that you were involved in the early formation and conceptualization of Not Dead Yet. Can you talk about that? Those early, you know, conversations and your involvment in that?

Smith: Yes I can, and that’s one place where my consciousness did raise before I got in any kind of group with disabled people. Already, prior to linking up with ADAPT, I was just extremely upset at the rhetoric that would come down in editorials when it was debated whether to fail to give life-sustaining treatment to newborns who had disabilities. I would just be very upset, and couldn’t find other people who were equally upset.

8-00:06:06 Hershey: Did you have an analysis of that, or was it just an emotional reaction? I don’t mean just an emotional—I mean, you know, did you articulate it in political terms? Or was it more visceral?

Smith: It was extremely visceral, but I think that I did see it in political terms, and as classes of despised people. I remember writing to The Village Voice, when the first baby Jane Doe [was born] —doctors were wanting to decline to give her the simple shunt, and the simple patching of the spinal cord, the open spinal cord, that saves lives. And who came to the rescue? Ronald Reagan!

8-00:06:53 Hershey: Yeah. And so, this was like in the ‘80s?

Smith: Yes, it was in the ‘80s.

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8-00:06:59 Hershey: And was your letter to The Village Voice published?

Smith: Yes it was.

8-00:07:01 Hershey: Really?

Smith: Uh huh.

8-00:07:02 Hershey: And what was your main point in that letter?

Smith: I really don’t recall; I probably still have it. But it was articulating, why was this person devalued, whose life—assumptions were being made about her life that weren’t necessarily true, the medical solutions were simple. I really, I think I saw it as murder. And extremely unequal treatment for able-bodied newborns. And I was very grateful to Nat Hentoff, I clung to what Nat Hentoff would be writing in The Village Voice.

8-00:07:46 Hershey: He was already writing about that issue back then?

Smith: Yes he wrote about that baby Jane Doe.

8-00:07:50 Hershey: Was that in The Village Voice also?

Smith: Yes, and I remember just feeling, you know, I couldn’t stand Ronald Reagan! And here he was our only ally, and that of course panned out across the Not Dead Yet history up through [Terri] Schiavo and on beyond. But I remember, that was way prior to my connections with other disabled people [on that issue].

8-00:08:11 Hershey: And when was the first time you met other disabled people that felt thet same way?

Smith: Well probably after ADAPT, because somehow I knew Diane Coleman.

8-00:08:22 Hershey: Through ADAPT?

Smith: Through ADAPT. And early on in the case of Larry McAfee, there I sat in Atlanta, with this guy down in intensive care, who was medically stable, but improperly placed in a horrible situation of intensive care in Atlanta, because Georgia nursing homes wouldn’t take him [because he was on a ventilator]. He had been shipped, as his mother said, like a sack of potatoes to other states, and because he was not necessarily a very pleasant person all the time, that tied into them not wanting to keep him. [He was shipped back to Georgia, and

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placed in the intensive care unit of Gracy Hospital.] So here was Larry McAfee, appearing in the newspaper constantly in the same ball hat, his little picture, and article after article about this guy going to court who wanted [assistance] to kill himself. And we would see editorial after editorial saying, yes he should be.

8-00:09:27 Hershey: Did you and other disability advocates in Georgia get directly involved in it?

Smith: I wasn’t going to at first; I kept waiting for somebody else to do it. And I think it was during that time that I would call Diane, because I knew she had a similar view, and there weren’t many people that had a passion for it.

8-00:09:44 Hershey: And what year was this approximately?

Smith: Late eighties. Well, nobody was doing anything about it.

8-00:09:56 Hershey: So you were just talking to Diane about it, but nobody in Georgia?

Smith: Right. I didn’t know what to do; I was waiting to be galvanized, and somebody else to do something. Meanwhile, the state of Georgia was writing that they had no compelling interest in saving his life, even though other suicides they would step in on. The medical profession was saying that he was merely refusing medical treatment when he was going to be actively disconnecting his—and the Catholic Church was—

8-00:10:33 Hershey: Disconnecting his ventilator?

Smith: Yes. The Catholic Church was weighing in that it wasn’t really suicide, because he would have really died if that nurse hadn’t stepped in on the roadside. It was just, every big institution going against us, and finally Paul Longmore called Mark Johnson, and said, “Are you guys going to do something about this or not?” Called from the West Coast. Well Mark was going out of town; it was a holiday weekend, either Labor Day or Memorial Day. It was Friday on the beginning of a long weekend. And Mark said, “El, take this; Paul Longmore says we got to do something, and we do.” So I spent the weekend trying to reach progressive lawyers on the phone, because this case was coming up very fast. We had to do things that very weekend. I think his case was coming up in court the very next week. I would call and call, and either people weren’t in for the weekend, or they were busy. Mostly they weren’t in. Then I remembered the name of this disabled lawyer I had met, who had spina bifida but walked on crutches. I remember, pulled her name out of a hat.

8-00:11:45 Hershey: Uh huh, who was that?

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Smith: Joy somebody. And then I remembered her last name. I looked her up in the phonebook, and lo and behold, she was home. I think possibly the first lawyer I was able to reach. She was home; she knew the McAfee case, and I said, “Joy, will you please help us on a last ditch effort to make a amicus brief?,” or I didn’t even know how to pronounce the word. And she said, “Oh, I agree with his right to kill himself—I agree with his right to [have help disconnecting] the ventilator.” And all of the wind went out of my sails; here was this disabled person. And so, I continued to try, and I got a hold of the Georgia Advocacy Office. And I believe two people, two women, and I wish I remembered their name to give them credit, were willing to meet with me on the Monday that everybody else had off.

8-00:12:41 Hershey: And what’s the Georgia Advocacy Office, is it like the P and A [Protection and Advocacy Office]?

Smith: Yeah, it’s the P and A. And they burnt the midnight oil to prepare a brief to take to the courthouse.

8-00:12:57 Hershey: And had they been considering this prior to you?

Smith: No, they had not.

8-00:13:00 Hershey: I mean, they must have known it then, it was a high profile case.

Smith: Yea, but I don’t think they had done anything.

8-00:13:07 Hershey: But you managed to persuade them.

Smith: I did. And these women lawyers met with me, and they wrote a brief. And the next week, our little group; Kate Gainer, Bernard Baker, Mark, Valencia Thomas—not more than five or six of us. We had called the press then, we got good press. And we went down in front of the courthouse where it was being heard, got on TV, wrote our little press statement, presented it, talked to the TV stations, went in the hear the case. Oh! In there was a very small crowd, there was a reporter from The New York Times, and there was us. I think a family member or two from Larry McAfee, all of whom were supporting his case.

8-00:14:13 Hershey: Where was Larry McAfee himself?

Smith: He was not there; he was lying on his back in the intensive care ward. We heard the judge—we heard the cases presented, he ruled for Larry to be able to do it, to be able to [get hospital assistance to] disconnect his ventilator.

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Mind you, Larry was physically able to disconnect his ventilator, he did not need the assistance of the hospital personnel.

8-00:14:47 Hershey: But he was asking for that.

Smith: He was asking for it, because he had disconnected it a time or two before and panicked, you know, it’s not pleasant to be choking to death, and he had panicked and pushed a button.

8-00:15:01 Hershey: And turned it back on.

Smith: Yes, well he got someone to turn it back on for him.

8-00:15:03 Hershey: So what exactly did he want from the hospital?

Smith: He had invented a little, being a Georgia Tech grad I think, a little gizmo that disconnected it. I think he wanted medication to ease that out, ease his panic and—

8-00:15:30 Hershey: So that he wouldn’t change his mind.

Smith: Right. And so, of course we were horrified, and the rest of the state of Georgia was waving pom poms in favor of this “poor guy” being able to be killed by the state. One of the judge’s statements in ruling in favor of Larry McAfee’s being allowed to ease himself over the edge, with outside help, the judge said, “This young man has shown a rational concern for the costs he is incurring his family and community.”

8-00:16:11 Hershey: Can I just ask, who was supporting McAfee? I mean, I know the whole state was, but did he have legal counsel from somewhere?

Smith: Yes, he had a lawyer who was helping him.

8-00:16:23 Hershey: Was that just a private attorney or was it some organization?

Smith: I think it was a private attorney who was doing pro bono work. Well, and then of course the judge ruled. Oh, we just felt—we just crept out of that courtroom, you hardly want to look at each other, right? Because not only has the state, the church, and the medical establishment ruled, did not protect you in any way, but now the legal establishment. And we felt like gum on the bottom of somebody’s shoe.

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8-00:16:57 Hershey: But were you at least, at that point, able to frame the media coverage a little bit?

Smith: Well we had already framed it, and there was a quote from me in The New York Times about it that was accurate. The Times reporter had spoken to us. And then, time went on, and Larry McAfee didn’t kill himself. But the sad thing is, case law had been established. So, Larry didn’t kill himself, he—we demonstrated twice in a state office that had not helped him get into nursing homes in Georgia. We went down first and we were turned away, [The main official came out of his office and said “We are not obligated to give Cadillac care.”] and again we felt bad about ourselves, but we said, “We’re coming back!” in weak little voices. And we came back gangbusters, and got great press, including blocking the main guy in his office, and when he tried to come out, there’s a picture of him, delicately in his elegant suit, suited leg, stepping over the head of this woman with a disability, blocking his office door. Big as life in the newspaper. And in fact, Larry McAfee, as a result of our efforts and his own, got placed in a group home.

8-00:18:34 Hershey: In Georgia?

Smith: Yes, over in Augusta, and he died of natural causes some years later.

8-00:18:44 Hershey: Did you ever meet him?

Smith: I did meet him once, and that was pretty neat.

8-00:18:49 Hershey: When was it? Was it much later?

Smith: Well first I’ll say that somewhere along this line, I was on Nightline, I was interviewed on Nightline about this issue, and what I thought was at stake. And Larry’s mother was on the same show. And so, Nightline I guess is a national show, yeah my sister saw it in California. She said, “Oh that’s El!” And so Larry had seen me on TV, so he knew what I looked like. And of course I knew him from his ever-present pictures with his ball cap on, in the Atlanta Journal Constitution. So one time, there was some issue, some disability-related issue, being debated at the Georgia Legislature, and somebody had brought Larry McAfee. It wasn’t about assisted suicide or anything, it was about, maybe assistance care or some key disability issue. And there was Larry, there in the crowded hall of the state house. And I saw him over the head of maybe ten, fifteen people between us in the crowd, and he saw me and recognized me. And I said, “I’m glad you’re here.”

8-00:20:13 Hershey: Did you go over to him?

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Smith: No, because I couldn’t, we were blocked apart. There was a little sea of people, we couldn’t have worked our way through. But it was about over where the TV is, as far away as that. I said, “I’m glad you’re here.” And it reverberated in every way: I’m glad you’re up here, and I’m glad you’re here. And he said, “So am I.” And I just got goosebumps, because we were both talking on that double level. That was neat. Other than that, I never had a conversation with him.

8-00:20:51 Hershey: Did he become then more of a pro-disability rights advocate?

Smith: No, not too much, but there he was up there—

8-00:20:55 Hershey: But he’d show up once in a while.

Smith: Yeah, he showed up, and he might have done a little more [I’m not aware of].

8-00:20:57 Hershey: And did he ever, I don’t remember, did he ever repudiate his earlier plea?

Smith: Not to my knowledge did he ever repudiate it.

8-00:21:08 Hershey: Then he never apologized?

Smith: No.

8-00:21:12 Hershey: So you know, I’m just curious, that Nightline appearance, I wonder if that was one of the first times that a disability voice against assisted suicide was actually heard nationally?

Smith: Well, it might have been, because it was pretty early on.

8-00:21:28 Hershey: It was early, yeah.

Smith: That’s how I know his mother said he was shipped around from state to state like a sack of potatoes. She said it on that show.

8-00:21:36 Hershey: And did you have any kind of memorable responses to that appearance from around the country or from anywhere?

Smith: No, not that I remember other than my sister writing me, she saw me on Nightline, and I don’t know where the tape of that would be. But then, you know, I got to know Nancy Moulton. I think Nancy was aleady involved back then, and went down to the courthouse with me. I’m not sure.

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8-00:22:04 Hershey: She was part of Let’s Get Together, or part of Concrete Change?

Smith: She was part of both. She was very into Canadian style healthcare, long before it was followed by many people. I worked with her some, in fact that was second arrest in my city, was to protest some things about that.

8-00:22:34 Hershey: What was going on with that?

Smith: What later turned out to be, I think, probably the HMOs [health maintenance organizations], were having supposedly neutral focus groups; trying to soften up the whole public that the pie is small, so kick out the most expensive people.

8-00:22:59 Hershey: There in Georgia they were doing that?

Smith: Yeah, they were doing it all over the country and in Georgia. It was very subtle. One of our friends who had started Let’s Get Together, Susan Robinson, was involved in working for them for their focus groups, because she hadn’t really grasped it. They were having exercises like the boat is small, who do you throw overboard? The expensive person needing the kidney transplant, or the three [hundred] women needing prenatal care. And we realized that it was softening everybody up for cutting healthcare and making it more competitive, and trying to devalue essentially the lives of chronically ill and disabled people. Thank you Nancy Moulton.

8-00:23:51 Hershey: So how did you protest that?

Smith: I want to bow to Nancy for a second, because she taught me to say, “and chronically ill,” in certain situations when I say disabled. So, what were you asking?

8-00:24:07 Hershey: Well do you want to say more about why that’s important, or maybe it’s summed up in—?

Smith: Well, by setting up a system where you consider the pie small, and don’t consider the spending being done elsewhere, and go with the spending that’s going for medical now, and then setting groups of, quote, more healthy people against people with more costly health problems, it just becomes a obvious way to off people with major disabilities, and Nancy got that right away.

8-00:24:43 Hershey: And she also made the emphasis on including people with chronic illness.

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Smith: Yes, yes, and she—we made a group called ‘Life Worthy of Life’ that was about that disabled people were worthy to live and not be killed. [The name referred to a book, Life Unworthy of Life, in Germany, by a doctor giving a rationale for deciding certain groups of people should be actively exterminated. It was influential under the Nazis, to justify extermination programs.]

8-00:25:02 Hershey: And what year did that group start?

Smith: A long time ago, prior to the schoolhouse, prior to Diane’s meeting at the schoolhouse.

8-00:25:11 Hershey: Okay, so probably early nineties?

Smith: Late ‘80s I think. I still have one of the two remaining t-shirts.

8-00:25:17 Hershey: And besides you and Nancy, were there other people in that group?

Smith: There were people who were not so much in Let’s Get Together very much. They were more people who we learned to know, who were in the fight for universal healthcare throughout the city, who we hadn’t known prior to that. There was a person who was hired by that focus-group group, who were trying to soften up the legislature; and he was a main organizer and kind of an operative, who had an office. It had a real devious, non-descriptive name. Nancy, Theresa Monroe, Pat Puckett, Mark Johnson, Calvin Peterson. A few of us only eight or so of us, went in his little office— it was only one room— and raised cane. And shut him in his office. Instead of shutting the door from the outside, we went in and shut him in, and yelled and hollered, and called the press, and he called the cops, and we went to jail and had a trial later. But—

8-00:26:51 Hershey: What was the charge? Trespassing?

Smith: Yeah. I was a little scared, because it was my second arrest in town, but we had a good lawyer step forward, who was the romantic partner of one of the main workers in the city for universal healthcare. And you know, Nancy really raised my consciousness about that whole issue. She was so stubborn, and so quiet and so relentless.

8-00:27:29 Hershey: And how did—did you have an impact on that? On the HMO issue?

Smith: Well, I don’t know if we did.

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8-00:27:36 Hershey: Or, what kind of an impact do you think that your group had, generally? In terms of awareness?

Smith: I don’t think we had a huge impact, we had an impact on each other. Nancy, Barbara and I went to the meeting that Diane held in Tennessee at the schoohouse.

8-00:27:57 Hershey: Do you remember what year that was?

Smith: No, I don’t. [1992]

8-00:28:01 Hershey: And the schoolhouse was her place that she had?

Smith: She had bought this place in Tennessee with the goal, it was rather rural, of making it a disability rights center and gathering place. And it was a little too remote to happen often; it was a beautiful space, wonderful. That was a very significant gathering. We were there two days and two nights — Lucy Gwin, Jean Stewartt, Carol Gill and her husband, Larry [Voss], Diane, Tom [Olin], I think, Lucy’s magazine partner, he actually didn’t take part [in the conversations but he cooked for us]. But we had some great conversations where we—

8-00:28:51 Hershey: And you, and was Nancy there too?

Smith: Yes, Nancy. She rode up with me and Barbara. We were there for moral support, and stories, and analysis, and we would just sometimes talk about how awful it was, and just shiver together, almost, quake together. And yet we would also reinforce each others’ beliefs.

8-00:29:22 Hershey: Did you also try to make strategy and analysis there?

Smith: I believe we did. There was a woman named Alice Mailhot with polio, from Michigan, who was there as well. I don’t know what all actions we took, but we did have some follow up steps. I just remember that it was the first gathering I was ever at where—

8-00:29:50 Hershey: So, do you think it was sort of the beginning of a network around an issue at least?

Smith: Absolutely, and if there were other networks going on, we were not aware of them. Diane just really focused on all that. And with her brilliance as a lawyer, and her perserverance, kept going forward. And, I think it was Bob who came up with the name Not Dead Yet.

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8-00:30:25 Hershey: Bob Kafka?

Smith: Yeah, while we were sitting there in the hall [at some conference in Texas]—

8-00:30:26 Hershey: Or was it Steve Drake that came up with it eventually?

Smith: Well I had thought it was Bob Kafka. Diane would be able to answer. But it turned out to be a great name. At first I thought it was too casual.

8-00:30:42 Hershey: Was that during that weekend?

Smith: No, that was later. It was actually at some conference that Bob happened to be at, I was at, Diane was at. We were in the hall talking, and I thought he either liked that name or he came up with it, there was no website or anything.

8-00:31:05 Hershey: So what was the next major step that you were involved in with Not Dead Yet? Or not—it wasn’t that yet, but with this issue of assisted suicide?

Smith: After McAfee, well—I was outside the Supreme Court that very, very cold January.

8-00:31:25 Hershey: ’97?

Smith: I guess it was. Along with Zan [Thornton], who travelled up with me, and we demonstrated outside the Supreme Court. And then I went to Michigan on a Not Dead Yet action, when we confronted the Hemlock Society. And I went to Boston with Zan, when—who is the Hemlock Society guy?

8-00:32:02 Hershey: Oh, Derek Humphry.

Smith: Derek Humphry was speaking there, and I believe Diane was on the program with him. In any case, we were all there for moral support. And then, a case arose in Georgia that I had to take leadership on, where this woman, Carol Carr, in a town maybe forty miles from Atlanta, she had two sons with advanced Huntington’s disease, and her husband had died of it, and her sons were now in a nursing home, and were getting terrible care. She went in, with a gun, and killed both of them. Shot them. And went and sat down in the lobby, and said, “Call the police.” And of course, most of the Atlanta Journal Constitution press was, you know, making all the statements that are so often made that devastate us all; that we can understand why she would do this, that she was driven to it, and that really it was a heroic thing that she did, almost. And of course, we did believe that she was driven to it, but that it was murder. So we took an opposite stance, and I organized an action down there. I think

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this was around the year 2000, I’m guessing. It was very hard to organize, I was running out of energy to organize on my own, but it turned out to be very successful. A lot of people came from across Georgia, and some of it was very touching, because it wasn’t a very large town. They tried to keep us from coming; I tried to do things the up and up way and get a gathering permit, and they were going to make us jump through all kinds of hoops, and I got a lawyer who wrote to them, “Hey, this is freedom of assembly,” and they backed down. It was Griffin, Georgia. And we all showed up and our visual was three disabled people sitting in a row, in their wheelchairs, and behind them, three [able-bodied people using three] means of murdering them. One had a fake knife over the throat of the disabled person, one had a fake gun to the temple of the next one, and one had a pillow to smother the third one. We wanted a really great visual, and that got in the papers. And we leafleted—it got a lot of press coverage.

8-00:35:25 Hershey: So this was at her trial?

Smith: No, it was in front of the courthouse just before the grand jury would render a decision. And you know one thing that was very touching to me, this was quite a small town on a very controversial issue, and we had a couple of local people participate, including a couple of people with some learning disabilites. This one woman from another town who did not have a learning disability, was a People First advisor, had really put out the word in clear but simple language, to people with learning disabilites, and had made very clear that this is a public action, and what the issues were, don’t come unless you want a little bit of controversy, but if you believe in this, come. There were some beautiful statements made by some of those people to the press. And what was the most meaningful to me, Merle Tant, a guy who worked in a sheltered workshop there, who had some learning disabilities; I had been in touch with him. He was either an officer or an ex-officer of that little town's People First— or maybe of the Georgia chapter. Anyway, he wrote—he could read, and he gave a beautiful statement to the press about people’s lives, and how disabled people’s lives were of value as well. And then he and I met a little bit afterwards, and I had written a letter to the district attorney who was going to be hearing the case, and I read it to Merle. I asked if he would take it up, being a local guy, to the district attorney’s office. I read it to him, and he said he totally supported it, and he carried it up and gave it to the district attorney’s secretary. He wasn’t in, but I know that she gave it to him, because she really promised, and Merle was sure that she would. It was hand delivered by a local guy, and you know, the press was in touch with us afterwards. We hated the Journal Constitution coverage, it was all terrible, but we got good coverage on the TV stations, some very balanced, and in the Macon paper. And we were okay with the sentence, our worry was she would be off scot-free. We didn’t want her to fry, we realized she was a victim of poor nursing home care. We didn’t want to fry this woman, throw her in the brig for her life; but we felt that it would be an awful message for her to go free, as people in those cases

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sometimes do. She got two years. We thought that was very fair for this older woman. She did her time. And then I did go down to Schiavo, that’s another story. That was very, very, very hard.

8-00:38:59 Hershey: Yeah, that was just, now, what year was Schiavo? 2005?

Smith: That sounds right. I went down while she was still alive with Carol Cleigh, that was wild.

8-00:39:14 Hershey: Were you and Carol really kind of the only Not Dead Yet representatives that stayed... ?

Smith: We were the first wave of Not Dead Yet down there.About a week later, another contingent of Not Dead Yet went down. Bruce from Rochester, Zen Garcia—

8-00:39:40 Hershey: Bruce Darling?

Smith: Yeah, Bruce Darling. Zen Garcia, Carol Cleigh went back down, Zan Thornton went down. Also, some people in Atlanta organized up in Atlanta while we were down there. Mark Johnson, Pat Puckett, Barbara Rose, Becky Tuttle of [Disability Link], went to the courthouse. All to no avail.

8-00:40:02 Hershey: And so, what made you decide to make the trip down to Florida for that?

Smith: I couldn’t stand it. I was reading the paper, I said, “I gotta go.” It was a Sunday, or a Saturday. I made a phone call to Carol Cleigh, because she was such a radical and I couldn’t drive down there physically by myself, and nobody—I called a couple local people, and it didn’t suit them to go down. I called her, and she said, “Sure.”

8-00:40:35 Hershey: And where did she come from at that point? I forget.

Smith: She used to be from Chicago, but she moved to North Carolina.

8-00:40:42 Hershey: So she drove to Atlanta from North Carolina?

Smith: She drove to Atlanta—

8-00:40:47 Hershey: And the two of you drove down together?

Smith: Correct. Got a motel room, went out there amongst all the Catholics.

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8-00:40:56 Hershey: And how long did you stay?

Smith: Two days.

8-00:40:59 Hershey: And you were out there all day both days.

Smith: Yeah, we might have been there three days. And, we were out there, you know, I mean, it was just heartbreaking.

8-00:41:11 Hershey: How did the religious people that were primarily Catholic—?

Smith: She was obviously still alive. We really felt that if there was enough pressure, she might be fed. It was beyond, way different from a symbolic thing. We were actually thinking, she’s hanging on, if somebody just, if the court can just decide to feed her and give her water, she might live. So, and her family was out there, and they’d periodically be escorted in, and all the religious people were there, and—we were not religious. I had my sign that said, “This lesbian agnostic says, ‘Feed Terri.’”

8-00:42:06 Hershey: And your photo with that sign appeared in newspapers around the country.

Smith: It did, because as long as I was there, I was trying to make the message known that there’s this other group of people who are not right wing, who care about this. And one of my quotes, was quoted all over right wing blogs, as well as in a Wall Street Journal editorial because I said to the Associated Press, “At this point in history, I would rather have my fate in the hands of a right wing Christian than the ACLU.” And of course they ate that up, and I’m glad I said it, because of the the stance the ACLU has taken on this issue. But one of the hardest things for me about that was my own liberal community that I live in. You know, people were averting their eyes when they walked past me, on that subject. I only got support from about three people.

8-00:43:19 Hershey: So there was support from some people and eye averting from other people. Did anybody in your community, like was anybody in your community willing to kind of debate the issue with you?

Smith: No, no. I mean nobody—I think they just thought I was off the wall. And then the people who did support, didn’t do a great deal, but at least they sent some emails.

8-00:43:52 Hershey: And so when you were down in Florida, what stands out in your mind about your interactions and your time there?

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Smith: Well, I am not a person to interact a lot, a lot of the time. I don’t know if you’ve figured that out about me. I mean I can sit quietly for a very long time and I am not as outgoing as some people think I am. You know, Mark Johnson is very outgoing, he’d have been interacting with everybody. I mostly didn’t particularly interact, but I did some. And there’s one I wish I would’ve interacted, said much more. You know we’re out there for hours, and a guy said to me with extreme puzzlement, “Are you really an agnostic?” I said, “Yeah, I am.”

8-00:44:39 Hershey: This was one of the other protesters?

Smith: Yeah. He said, “Are you really agnostic?” I said, “Yeah.” He said, “Well, why do you care?” And I said, “Well I care, it matters,” but he had the look of complete puzzlement in his eyes. It was like, how can you, an agnostic, have a moral system that is strong enough that makes you sit out here? You know to him, an agnostic would be a person who didn’t give a care about anything, and I should have engaged him in a longer conversation. I wish I had. Now something funny happened with Carol. Carol sort of was starting to celebrate some fairly obscure line of Native American blood that she had, and she was subscribing to some Native American spirituality. On at least two occasions, people came up to try to convert us to Christianity, to witness to us. Anyway, this was right by my head, I heard the whole conversation, this woman comes up, “Jesus cares very deeply for you, have you been saved, have you accepted?” And Carol looked at her, and said without cracking a smile and not meaning any irony, “May Corn Woman grant you doubt.” [laughter] That woman faded away, like the setting sun. She just sort of backed quietly away. [laughter] I loved that line, and she didn’t say it as a line, but boy, if I’m ever accosted again by someone wanting to save me, I might say, “May Corn Woman grant you doubt.” But really I suffered through that time period. It was so horrible.

8-00:46:48 Hershey: Did you happen to engage with Terri Schiavo’s family while you were down there?

Smith: Just a glimpse of them. They stayed in some sort of other place, nearby, like a little cottage. And periodically, some sort of companions would make way for them, and walk them in almost, in order that they didn’t have to be assaulted by people, in their grief. I don’t mean assaulted, but I mean even questioned. So I saw them, and you know it was quite a scene out there. And Carol would say some really political good things to people. She got in a frank talk with this one guy, she said, “You know, you’re all for Terri Schiavo living, and you’re down here spending your time supporting her, and your own state is cutting funds that keep people alive.”

8-00:48:02 Hershey: And what state was he from, do you know?

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Smith: I think Arkansas in that case. Arkansas or Alabama. He looked like he knew what she meant, he looked sheepish, that’s the word. And that is the case for so many of them; they’re down there trying to keep Terri Schiavo alive, and they believe in cutting services for disabled people. There was one other non- religious right ADAPT person down there, actually. Heather [De Mian] and her mother [from Missouri]. Her mother was from the very progressive political Catholic wing. So you know —I think that as deeply involved and committed as I am to Concrete Change, and thinking that [changing how houses are built is] the place for me, wanting to keep my focus there in a laser-like way, I still believe that the most vital movement is the Not Dead Yet movement. Vital in terms of absolute, in-the-bone importance.

8-00:49:43 Hershey: And why do you think that?

Smith: Because it’s about the raw, immediate murder or protection from murder of people with disabilities.

8-00:50:06 Hershey: Yeah. [pause] And what do you anticipate for the future of the issues that Not Dead Yet works on?

Smith: Unlike the housing issue, which I feel just has to prevail, because of the common sense; on the Not Dead Yet issue I don’t have a take.

Hershey: Really?

Smith: I don’t have a take. If the world evolves like we would like it to, with people realizing the value of human life and realizing that there can be plentitude, if we stop misappropriating our money, we can protect very expensive lives. It could evolve in that humanistic way, or it could evolve a different direction, I don’t have a take. Do you?

8-00:51:04 Hershey: Maybe it’s, maybe it’s obvious from everything you’ve said, but what—how do you see the two issues being related?

Smith: Yes, in a broad way. In a broad way I certainly do. You have to be kind of cold hearted and—you have to otherize somebody and cut yourself off from your compassion to say, “We know we could build this house right. We know that it impacts your life very negatively, and the life of a lot of other people. We know that it’s easy to do otherwise, but we’re going to sit here and let the market be the final arbiter. We could do our houses differently tomorrow. We don’t have to wait for a law. [But we’ll keep building barriers].” That kind of otherizing and cutting yourself off from compassion also makes it possible to decide that certain expensive lives should just “for the good of all” be snipped off. And so in that way, I see a relationship. And you know, if there were real scarcity, it would be another matter. If there were genuine scarcity, then if

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only a few people can be saved, then it’s a different situation, but it’s not that way. So it’s quite nasty, quite brutish to—it’s quite—I mean it’s not easy, I can’t think—

8-00:53:10 Hershey: No I think that’s very clear, I think you’ve stated it well.

Smith: [On the positive side, I believe as more houses start having basic access routinely like we now have plumbing, like we have electricity, that will go deeply into people’s psyche. Both disabled people and non-disabled. The reality that disability is a normal part of life. When more public buildings started to have access, public streets started to have curb cuts, we noticed seeing more disabled people out and about. When houses follow suit, that will keep happening, and more deeply, more intimately. Because that is the family, the close friend, the lover. I don’t believe that proximity necessarily leads to insight or justice. Look at slavery before the revolt. But it can help. And it sure would lead to less anxiety and more fun for people with disabilities.]

Do you have any final questions?

8-00:53:21 Hershey: Well, I would like to return to your personal life, in order to make the oral history complete. Do you have the energy for that, or do you want to do it tomorrow?

Smith: No, I would like to finish, if you are referring to my community that I am able to live in now?

8-00:53:38 Hershey: Yeah, I mean, I would just sort of go back where we left off in your personal life. You and Barbara Rose were living in a house that you had bought?

Smith: Yes.

8-00:53:49 Hershey: And then I know that at some point you got involved with a co-housing community?

Smith: Right.

8-00:54:01 Hershey: Can you tell me more about how that came about, what drew you to it, and how you got involved?

Smith: Well I had always been interested in communal living, way back before I moved to Koinonia, at age 29, and in certain other situations after that. Barbara was also very interested in intentional community, and we had made a few stabs at it together by trying to interest other people in it, but it was that

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post-hippie era, when it wasn’t being done anymore. Then a friend came to us and said, “Guess what? Some people are meeting in the Quaker house about forming intentional community.” We went to them and began talking with them, and just by coincidence, we heard about the co-housing movement at the same time. A guy had come to town, and had fliers up about the co- housing movement. So we went to his presentation, bought a book about co- housing, and we took that factor to the little Quaker group, and they were extremely interested, right away. Co-housing generally has people gathered together to discuss how they want to live together, prior to even having land, and then they try to follow a general co-housing model. So, we did not have land yet, we were looking for land.

8-00:55:33 Hershey: And how big was the group at this time?

Smith: Only about eight people.

8-00:55:43 Hershey: And then it was you and Barbara, and were the other people like, what were they like? Were they just diverse, or were they?

Smith: No, they weren’t very diverse. They were all Quakers, and they were all white, except one Asian man, and they all attended the Quaker house. I mean, there’s a lot of diversity in humans, but even so. We put ads in some magazines that would tend to draw alternative type people; some green- oriented magazines, and the local alternative newspaper, and the local health food store, we put fliers up. Our group grew rather quickly.

8-00:56:30 Hershey: So how big did it grow to?

Smith: Well by the time we bought land, I would say there were twenty-five to thirty adults. We were first just talking, and then we decided we’re going to go for this; met this guy who had land, and became a cohesive group, and put a little bit of earnest money on to prove our membership, and then were able to have actual meetings—I mean, formal meetings where we kept minutes. At the very first meeting, Barbara and I proposed that every home have visitability, and it was unanimously agreed to right away.

8-00:57:27 Hershey: Wow, it didn’t take any persuasion, or did people—

Smith: No.

8-00:57:30 Hershey: Fear it would bring costs up or anything?

Smith: No, they just said, “Oh, of course, sure. Why not? Why would we not do this?”

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8-00:57:36 Hershey: And did the group have sort of a guiding philosophy beyond just communal living?

Smith: Well, co-housing—

8-00:57:50 Hershey: Or not communal, but yeah, co-housing.

Smith: Well co-housing has certain basic values usually; it involves you own your own house, always,in co-housing [but own the land communally], that’s just one form of intentional community. And often you try to buy a fairly good size piece of land, mash the houses all together, and keep some of the land open; which we were able to do. So that you share a huge backyard, so to speak. It’s also a community plan that you don’t usually drive to your house, you don’t have attached garages. You have walking paths that in emergencies can serve as a path for a fire truck or ambulance, but are rarely, if ever, driven on otherwise. And so you see your neighbor more often. The houses are quite closely tied together, and since living there, that has been one of the most positive aspects.

8-00:59:00 Hershey: Well, when did the group start, what year did you actually, you know, build the—?

Smith: We moved in, I think in 1999, and the discussions started at least three years before that, with the Quakers. And there’s sixty-seven houses, it’s one of the biggest co-housing communities. It’s too big, in many ways. But the people’s support for visitability has just been great.

8-00:59:32 Hershey: Yeah, were you surprised by that? I mean by that time you’ve been fighting against a lot of opposition to the idea, in the ordinances and—Were you surprised by the agreement?

Smith: No, I wasn’t, because it was already people with a lot of positive social values, that had already drawn them together. There was really only one person who didn’t like the idea of visitability, and she was secretive about it, and became the only person out of sixty-seven that did not build any downstairs bathroom. I had it out with her a little bit, mildly, afterwards [when I learned that she had done that]. She defended her decision, and honestly, I don’t believe in karma—I don’t believe in it at all—but what actually occurred is, a couple years later, her son was hit by a bus in New York City, and his legs were very badly injured, he almost lost a leg. He was on crutches for a long time. In the hospital for many surgeries. And he came to visit her, and was on his crutches, and I know he had to either pee in a can or stagger up a set of steps, because she had no down—out of sixty-seven houses, she was the only one—and I didn’t say a thing to her [after her son was hit], why

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would I? I was not going to say anything to her, but she came up to me once. She’s quite a character, and makes very short, sharp statements. She said to me, “Well, I’ve learned more than I needed to learn about access.” And I said, “I’m sure you have.” She would never do that again, I guarantee it. But really, in terms of what the community has done; they’ve posed for my photographs, they let people in their house to take a tour, right in their house. Some of them have done free computer fix-its for me.

8-01:01:47 Hershey: So they’ve really been kind of supportive of the movement, even more directly.

Smith: Yes. They really have. One of them drove the bus for a visitability tour. Three of them came down and helped me demonstrate at an inaccessible housing project. It does make me smile. So, just to be able to, you know—one time we had some fliers that were supposed to be delivered [in the community]; I ran joyfully house to house, putting these fliers in the door, just because I could.

8-01:02:32 Hershey: So yeah, I mean what has it meant to you for the last, what nine years or so?

Smith: Uh huh.

8-01:02:39 Hershey: To actually have a whole lot of neighbors that you can visit.

Smith: It just feels great. You know one night, Barbara and I had a miscommunication, it was ten o’clock at night; I was locked out of the house and she wasn’t home. It was dark and it was night. Ordinarily, I have a couple of friends with ramps in their house, but they’re miles away, and it was ten at night. I probably would’ve tried to find some motel. Instead, I went over to my neighbor’s house and knocked, and said, “I know it’s late!” But I knew they had a downstairs bedroom. I slept, I used their bathroom. My neighbor needed someone to come over and stay with one of his kids when he went and got medicine for him; I was able to go in the house. I’ve been able to go visit new babies and take them a present. I’ve played board games in at least five or six of those houses, been to dinner [in at least a dozen]. You know that when you have a major mobility impairment, you either don’t go or the preparations are completely un-casual. You know, they’re very labor intensive, and you have to plan in advance just to able able to drop by, to sit on a porch with somebody. And also then, of course, I would say several hundred people, counting all that have come in groups, have come and toured the community, for the purpose of seeing the visitability. In fact, the first study committee on the bill that we’re dropping in—

8-01:04:32 Hershey: The federal bill?

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Smith: No, the state bill that all houses on a concrete slab in Georgia. They set up some summer study committees. And so, when I get back, we’re supposed to have five members of the House of Representatives. That’s where we’re holding our meeting, in the common house there in the community.

8-01:04:51 Hershey: So I don’t think we talked about that main bill, it would require visitability on all houses built on concrete slabs?

Smith: Yeah, on all houses built on a concrete slab.

8-01:05:01 Hershey: No matter what funding source?

Smith: Right. And so that would be more than half the new houses in Georgia. And I’ll say it’s going to fail. As easy it is to do, it’s going to fail. But it’s time for another bill now.

8-01:05:13 Hershey: So you’ve been able to use your community as a real educational piece too, along with the Habitat development.

Smith: Right, we’ve had visitors from Japan, visitors from Korea. Many people have strolled through and taken notes.

8-01:05:40 Hershey: And you and Barbara continue to live there together and work together?

Smith: Yes, we do. [We broke up as lovers a few years ago. But we continue as housemates and Concrete Change work and like family.] If I can’t be there for a tour, she takes it. She’s just, without being obsessed, it’s more than a job to her; and she’ll come home and say, I saw this new development xyz, and I’ll go photograph it, and she gives me some of my best slogans. She just, she knows the issue upside down and backwards after all these years.

8-01:06:22 Hershey: Yeah. [pause] Well, is there anything else that we should talk about before we—do you want to say anything about the future? I mean I guess we talked about that a little bit.

Smith: No, I think we have talked about it. I think you’ve covered the territory very well. I feel like you have turned over, between the two of us, as far as I know, we’ve turned over the major stones.

8-01:06:51 Hershey: Yeah, well I think this has been an excellent interview, and I thank you so much.

Smith: I’m glad, I’m glad that you did this, I appreciate it.

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Addendum October 8, 2008

Begin Audio file # 9 Eleanor Smith

9-00:00:10 Hershey: Hi, this is Laura Hershey and Eleanor Smith. Today is October 8, 2008, and this is an addendum to our interview, because we thought of at least one more topic that we need to talk about. Eleanor, one area that I’d really like to explore a little bit with you is the whole issue of access to lesbian and feminist community. I know that you’ve been an advocate on that also, for many years. Do you want to talk about that a little bit in general terms first? Or do you want to go right to the Michigan Womyn’s Music Festival?

Smith: I think, I don’t consider myself honestly a pioneer, really, to bring access to the lesbian feminist community, except in very small ways. I think what I do hold is, I believe that in spite of many lapses and failures, the lesbian feminist community has done a good job of, comparatively good job, of the non- disabled people, women, attempting to understand disability before some other groups did. And I think Michigan Womyn’s Music Festival is an example.

9-00:01:41 Hershey: It sounds like that was also your experience in Atlanta, with the strong support you got from the lesbian feminist community for your activities with Concrete Change, right?

Smith: That’s right. They built a ramp on the first ALFA [Atlanta Lesbian Feminist Alliance] house, and then when they moved to a new ALFA house, even though it required more—a longer ramp, they made it a priority. And some of those lesbians also made it a priority to ramp this old church, where the lesbian feminist chorus that I was a member of met. Not just for me at all did they do that, but really—this fairly small group of lesbian feminists in Atlanta paid way more attention to physical access than most groups did. And if we go back to the Michigan festival, I went to the second one that was ever had.

9-00:02:44 Hershey: And what year was that?

Smith: It was ’77.

9-00:02:47 Hershey: Okay, and how did you learn about it?

Smith: I’m sure from other ALFA members.

9-00:02:53 Hershey: And did you go with other people from Atlanta?

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Smith: Right, being relatively young, and we drove, you know. We went to work, got off work at five o’clock, hopped in our car, and drove seventeen hours, rotating drivers, three of us, and didn’t think that much of it. And you know, that was the day when we could do that.

9-00:03:19 Hershey: So it was the second ever Michigan Womyn’s Music Festival?

Smith: Right.

9-00:03:23 Hershey: And did you contact them in advance to ask about about access or anything?

Smith: I don’t really remember, but I do remember what they had done. The festival was still pretty small back then. It was totally amazing, as it is now. And—by now they have paved some paths through the woods with asphalt, specifically for disability access, but back then, they had made an effort. Even though it was fairly rough and primitive, they had laid down snow fencing over the dusty hills, so that wheelchairs wouldn’t get caught in the dust. And you know, I had never been anywhere that wasn’t specifically disability related, where there had been an effort to accommodate disability. And it’s the very first concerts I ever saw interpreted. We’re talking thirty-four years ago, and not a disability related conference, and there were sign language interpreters, beautifully doing the songs. I wonder historically, if that festival was not among the very first, that was not a specifically disability related gathering, that actually did sign language interpretation.

9-00:05:11 Hershey: What other kinds of accessibility features did you find there?

Smith: I found a beautiful wheelchair accessible outhouse, and even had my picture taken in it. It had, they had built this wheelchair height outhouse, with wooden grab bars. It was beautiful! It was just, I loved it. And I can’t remember—I don’t think there was a DART yet. The history of DART should be written by somebody. I know that—

9-00:05:51 Hershey: Do you want to say what DART is?

Smith: The disability resources area that—special camping area that Michigan evolved, over the years. But there were people helping us, and I rememeber early on—I don’t know what year they did this, but they started this Helping Hands thing. As a person with a disability, I never had a paid assistant, because my level of need was not such that I would be awarded that, because there were a lot of people who needed it much worse. But when we went there, I found that being able to go to someone who was not my immediate friend and partner, and get some assistance in that impersonal way, was so wonderful. I didn’t realize how much that would be good in my life, until I

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had it for a little while. I didn’t have to use it very much, but I knew that I wouldn’t have to ask my friend or my lover, “Could you do this? Could you do that?” Sure it’s great to have friends and lovers who will do things, but to be able to have someone who had set their time aside, because they wanted to do that for their work exchange; and they were in a tent, and if you needed a shower and your partner wanted to read a book, your able-bodied partner, you would go to the tent and you would say, “Could I have a little help with washing my hair, because my arms are stiff?” You know? They were really in my view, ahead of the curve; and it created a sort of physical relaxation in me that I didn’t experience very many other places.

9-00:08:06 Hershey: Were you surprised by those kinds of access features?

Smith: I was. I think I went not knowing there would be any access features, that first time, and I was touched by what was.

9-00:08:19 Hershey: And did you—do you remember if you talked to anyone there about it? Or did you hear their philosophy behind it?

Smith: No, I didn’t.

9-00:08:34 Hershey: You just felt it was another example of community?

Smith: I did, and I think that they called attention to it on their program. Yeah, I think that if you look at the early programs, even very early on, they probably talked about that stuff.

9-00:08:51 Hershey: So how many years did you go to the Michigan Womyn’s Music Festival?

Smith: I think I probably went eight or nine times over the years, and maybe even a little more.

9-00:09:03 Hershey: Consecutively, or just every—or were there gaps between?

Smith: Sometimes I’d go twice in a row, but usually there were gaps between. And now it’s been a good number of years, but it’s my goal to back either ’09 or 2010.

9-00:09:21 Hershey: Was it largely the same over the years, in terms of accessibility? Did it get even better? Did it get—

Smith: It got even better, and of course, then it got a bit contentious at times, too. It got even better, in that they definitely set up DART; and DART had a

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walkway, a wooden walkway, and you could pitch your tent at the edge of that walkway; that and a little spur would lead directly to your tent. They added shuttle buses that had access, that had lifts on them. They began paving paths through the woods. One thing they did that made it more difficult for me is that, at first you could just drive your van into a certain area, and I slept in my van, for example, instead of pitching a tent; it was much easier for me. But then as more and more disabled and older women came, they would not let you bring a vehicle in, and that became a little harder to manage, because people would have to rely on the shuttle to come a distance. But yeah, they made improvements over the years, and I met some really neat disabled women there.

9-00:10:57 Hershey: Did the— obviously, the number of disabled women grew quite a bit over the years?

Smith: It did, because disabled women heard about it, but also the aging factor, you know? They also had a women-over-forty area that was separate from the disabled area. Back then, a woman over forty—we remarked on that with some friends the other day, that in the lesbian feminist community, that was not the bar culture, but the more political, we would think a woman over forty was very exotic. There were not a lot of them, at least certainly not in the Atlanta movement. And I guess, now of course with aging, dykes have aged right along with that. So I don’t know what all they have now, because I haven’t been there for a number of years. I know that they would actually build people a bed in the common tent that they put up. You could come there in DART, and if you couldn’t pitch a tent, you could bring your gear, and you could sleep in a great big common tent. And then they began to offer the service that they would—because a lot of women couldn’t get up and down off a cot, if you sent the specifications early enough, they would build a wooden platform for your air mattress.

9-00:12:38 Hershey: Do you think that Michigan helped to—did it kind of help create a national—I don’t know, informal network or some sense of community among disabled lesbians? Did you know disabled lesbians before you went there?

Smith: Yes, because I had moved—no, wait a minute, did I know disabled lesbians? No, I guess maybe I didn’t, because that’s where I saw Connie Panzarino, and met her. I think I might have met my first disabled lesbians back there. I would go to some of those workshops that we held together. And then the other thing that was stunning, really, was that women took off their clothes there at Michigan, and strolled around, and you would see all kinds of different bodies. Women with mastectomies being nude, women who were very fat being nude, bearded women, women with bent bodies, and certainly me in my wheelchair and other women in their wheelchairs. It was certainly

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the first open display of a great variety of ages, and disablities, and bodies, just right out there.

9-00:13:56 Hershey: And how did that impact you or other people?

Smith: I loved it. And I think that it can’t have helped but had a tremendously positive effect, even if semi-conscious on able-bodied women who were there, as well as empowering disabled women. For them to see, bodies are bodies; they differ. I think that in a subtle and maybe very overt ways, Michigan decreased ableism in the people who attended, both internally with people with disabilities and also women who didn’t have disabilities. I know that then later there were battles and fights, a few of them. I was even reluctantly involved in one one year.

9-00:14:47 Hershey: What was that? Do you want to talk about that?

Smith: Yeah. There was one year when disability policy had kind of degraded for a little bit. I think it had to do with the people chosen to coordinate it, for one thing. Also, they couldn’t—Michigan felt they couldn’t continue to have lots and lots of vehicles in close, lots of RVs and so on. So they had to limit, they were petty much forced to limit the number of vehicles that could come in. But one year, it was the inimitable, and now deceased, Mary Francis Platt was there; that’s where I met her as well.

9-00:15:38 Hershey: But you had met her before that one?

Smith: I already knew her before this one, where we had to act up somewhat [at the Hemlock Society protest in Michigan]. That’s where I met your attendant, Cara, that year actually. [That year] there was a lot of space, extra space in DART, that didn’t have tents; and one woman out in the RV area had very real physical reason to bring her small van in, into the inner circle, but the festival was not going to permit that. And we met in a little circle of support, trying to find a way to get her in, and we were rebuffed, in spite of our best logic. Usually I went to Michigan, leave me out of the activism, whatever it might be. Just let me hear the music, and let me love what they have done. But that year, I agreed with Mary Francis that what was going on was just needless rigidity about rules. There was room for that woman, she had an honest real need, and—

9-00:16:48 Hershey: Wait, do you remember what year this was?

Smith: No, I don’t. It was—not one of my earliest festivals, that’s about all I can say. And finally, we met over two days, and finally we agreed that we needed to do civil disobedience, which is our very last resort. And so we said, “Nothing

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else is working;” it was a little group of ten people. “How many people are willing for their ass to hit the gravel?” And four hands went up, and that was enough. Because what we were going to do was lie down on the road, and it would utterly disrupt their goings and comings. And the other women who weren’t willing to lie down in the road were willing to hold up our signs, explaining why we were doing it. And the minute these four hands went up, and we grimly, the last thing I wanted to do at Michigan, prepared to gather up our little gear, all of a sudden the wish was granted. The demand was granted. And we realized that the management, so to speak, had a person sitting in our group the whole time! [laughter] And the minute they were pushed to the wall, they found it less trouble to do what we wanted than not.

So she was able to drive her vehicle in, and then we had this meeting with Lisa, one of the founders, the next day, where there were about thirty people. Poor Lisa looked so haggard, you know. But in fact, that had been very unreasonable, it was something that needed to be fought for. Mostly though, you know, when the full story of Michigan is written someday, with all its warts and all its wonderfulness, I think that the disability contribution, the disability rights contribution, is a very important part of that history, that that festival made. Have you ever been?

9-00:19:21 Hershey: I went once, yeah, and I would like to go again—I went in ’86, Robin and I went. Anything else about lesbian feminist community? Have you ever wanted to work on disabled women’s issues from a feminist point of view, as a primary advocacy issue? Or would that take away from your housing work?

Smith: I am—no, I helped organize the national festival, and—

9-00:20:06 Hershey: Which one?

Smith: The National Lesbian Conference, that was such a wild and crazy event, down in Atlanta one year. [1991] And I just recently participated in some disability workshops at Charis feminist bookstore. I also was in an old women’s group, and presented at the social forum, US Social Forum, last fall.

9-00:20:39 Hershey: Oh, can you tell me about that, a little bit?

Smith: What, our old women’s group?

9-00:20:44 Hershey: Yeah, and the presentation.

Smith: I had heard about a book that I wanted to read, that two of my friends read, called Aged by Culture. And so, we had a little ad hoc reading group to read that book together; about seven or eight women, Barbara being one, there at

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the community I live in, plus a couple of women from my eating co-op, ranging in ages from our fifties on up to our oldest member was ninety-three in that discussion group. And we read that book in a way I love to read books now, I’ll never be in another book group where you have to read the whole book, and then meet. We read this book in seven or eight little chunks of thirty or forty pages, and then we’d meet, and then we’d read our next thirty or forty pages. And it really allowed ample time to discuss. In all of her analysis, which was not just about growing old, but it was about a much broader view of age oppression, than merely ageism, but it was that too. So, I really noticed a gap in her analysis, which amazingly enough, was the disability aspect. She really didn’t deal with disability as a part of aging. So when the US Social Forum was held in Atlanta last fall, where people’ve come from other countries and all over the United States, many people of color, women, a lot— quite a few disabled people, all progressives from around the country. It was really quite neat. Our group offered to do a workshop there on the Aged by Culture book, and the little piece I took was the piece I felt she had left out, which are the overlap of the old oppression and disability oppression, yeah. I’ll send you the paper, you might want to see it.

9-00:23:09 Hershey: I’d like to.

Smith: Yeah, it was fun to do, and in fact I sent it to the author of the book.

9-00:23:15 Hershey: Did you get a response?

Smith: Yes. We corresponded back and forth a couple times, and she allowed as how she needed to do more thinking about that. And she was kind enough to write me back, and we wrote back and forth a couple of times. Then she told me I should blog on—I should speak on her blog that she holds, about this issue. And I wrote, “I can’t, I’m too busy, I have a one-track mind, would you please just blog on my behalf?” [laughter] So yes, my focus is very, very pointed.

9-00:24:02 Hershey: But I think that this helps to round out our interview quite a bit, and so, I appreciate your being willing to do one more little session. Is there anything else you’d like to add before we wrap up again?

Smith: No, there isn’t.

9-00:24:23 Hershey: Okay. Thank you very much Eleanor.

Smith: You’re welcome.

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Laura Hershey, interviewer

Writer and poet, consultant and trainer, specializing in disability rights, health policy, and community organizing. She has published poems in numerous journals, anthologies, and websites; more than one hundred essays and articles; and Survival Strategies for Going Abroad: A Guide for People with Disabilities, 2005.

Activist for social justice, particularly disability rights, and for economic justice, including the rights of home care workers and other people whose labor supports disability independence.

Intern with the Regional Oral History Office, 2006-2007, as part of her completion of the Master of Fine Arts in Creative Writing from Antioch University, Los Angeles.

Laura passed away on November 26, 2010, after a brief illness.