 |
|
Given the number and range of research projects about lesbians in recent years, it is easy to forget how challenging it was to survey lesbians even a decade ago.
But when Caitlin Ryan and Judy Bradford conducted what became the National Lesbian Health Care Survey in the 1980s, they were breaking new ground. This study eventually brought in 1,925 completed questionnaires from lesbians in all 50 US states. It figured prominently in the recent Institute of Medicine Report of the National Academy of Sciences. And even today, there are lesbians (including me!) who remember completing a questionnaire for this study 15 years ago.
In the late 1970s, Caitlin suggested forming a national organization that would be multi-disciplinary, focus on lesbian and gay health issues, and sponsor research and education. At the time, there was no available information on how lesbians conceptualize lesbian health or how stigma affected health, mental health, self-care, and access to care. She began to talk with other lesbians about the need for a survey.
With a grant from the fledgling National Lesbian and Gay Health Foundation, she hired a research consultant, sociologist and survey researcher Dot Parkel, to help design the study and develop questionnaire drafts. Caitlin says, "I remember talking with a researcher who was herself a closeted lesbian, who sat down with me and basically told me that I could not possibly do a study like this. She just felt that it was not feasible. And, of course, there was no such thing as a representative sample. I saw this woman recently and we laughed about her earlier skepticism. She said, 'I told you that you couldn't do and you went out and did it.'"
Judy got involved by attending the International Lesbian and Gay Health and AIDS Conference at New York University with a male friend from graduate school. They were both interested in AIDS research, which was just getting started then. Everywhere Judy looked - and she went to a lot of sessions - there were mostly men. Then she noticed a scheduled women's group, which turned out to be an organizing meeting for the National Lesbian Health Care Survey. Caitlin was facilitating the group; when Judy said she was a graduate student and described what she was doing, she suddenly became co-investigator, responsible for data analysis and preparing the survey report.
Caitlin had been very concerned about inclusion. Many early studies, and even those conducted today, show highly educated samples of lesbians. She wanted to include women of color and women of different economic backgrounds without language being a barrier. So she talked with people about how to ask clinical questions in a non-clinical way. "I talked with women bus drivers, day laborers, women who had been recently diagnosed with cancer, about their experiences and how we should ask these questions," she says. "All of that helped frame how we would shape a questionnaire."
She elicited suggestions about language in focus groups in several different parts of the country. They pretested the questionnaire at several lesbian and gay conferences and with individuals around the country. They would ask the women in focus groups to fill out the questionnaire; then they would talk about it and hear what people thought of it to make it more accessible. After several cycles of that process, they finalized the questionnaire.
Since Caitlin had done the early lesbian and gay health organizing, she had a large address base of people around the country willing to help distribute questionnaires. Their distribution plan was kind of an unusual approach to snowball sampling. The methodology was intended to get the questionnaires out as broadly as possible to people all over the country, including Alaska. As part of the attempt to reach underrepresented, previously unsampled populations, they made a commitment to getting it to lesbians in the military, on Indian reservations, and in prison. They also tried reaching non-English speaking women and lesbians of color in a variety of ways, including having lesbians of color give it out to their networks around the country. Groups as varied as the National Coalition of Black Lesbians and Gays, the Wisconsin Governor's Task Force and the National Organization of Women sent out information about the survey, and details appeared in a variety of lesbian and gay newsletters.
The survey went out in the fall of 1984; by early 1985, they had received surveys back from 1,925 lesbians from every state. Hearing from so many lesbians was not only a wonderful experience, but had the sense of a national movement. There was an electric energy - everyone had a great sense of how important the survey was.
Of course, the challenges did not end there. Another major issue was finding money and personnel for data entry and analysis. The early 1980s was not a time for funding lesbian projects. Once they managed to put together a shoestring budget, Judy sent the questionnaires out to the Virginia State Prison, where all the lab's data entry was done at that time. She says, "The questionnaires did not arrive back. When our project manager called about this, he was told they wouldn't code the surveys. I got another company to do it, and the same thing happened. Finally, when it came to the third company I was told that the data entry staff were afraid to touch the questionnaires for fear of getting AIDS!"
Eventually, the final hurdles were overcome, and the landmark study was completed and released. Over the years, wherever Judy and Caitlin are, they continue to run into lesbians who participated in the survey, and who want to talk about the impact that it had on them. Many women wrote pages of material in addition to the answers they gave to the items on the questionnaire.
Esther Rothblum is Professor of Psychology at the University of Vermont and Editor of the Journal of Lesbian Studies. She can be reached at John Dewey Hall, University of Vermont, Burlington, VT or by email.
