In response to: “It should be more outspoken and not hushed away, not like put in a dark box”: An interpretative phenomenological analysis of experiences of menopause voiced by women with learning disabilities (Katie Langer-Shapland, Stephen J. Minton, Nel Richards)

Abstract

We are three women who have all gone through menopause. We all live and work in Melbourne, Australia. Amanda and Janice are self-advocates for the rights of people with learning disabilities in Australia. They have been advocate researchers in a number of research projects over the past 20 years including studies on sexuality and relationships, women's sexual health, a history of self-advocacy and life histories of women with learning disabilities (Johnson et al., 2001, 2002; Traustadottir & Johnson, 2000). Both have held official positions in self-advocacy organisations and have presented their work at conferences in both Australia and overseas. Currently, Janice is president of a self-advocacy organisation and Amanda is involved in a number of different advocacy organisations and a community radio program. Kelley is a researcher who has worked with Amanda and Janice on a number of the research projects in which they have been involved. We have written articles and book chapters and given conference papers together.

We have been colleagues and friends for many years. We met three times to review this article. At our first meeting we looked at five possible articles which we could review and chose the one which seemed most relevant to us as women. We discussed this decision at some length and some of that discussion is included in this review.

We received from the authors of the article a plain English version of it, which we found very helpful. On our second meeting, which was a full afternoon's work, we used the Plain English version as a basis for our discussions. We had all read it before we met. Kelley had also read the full article and went to it when we wanted more detailed information than that given in the Plain English version. We recorded our discussion and Kelley also made notes of it. During this discussion we identified questions we wanted to discuss with the authors, and we also discussed our responses to the article. The questions were sometimes a starting point for discussion and sometimes they developed from it. Kelley took the recording and notes home and wrote a draft of our response. She sent this to Amanda and Janice. At our third meeting, we discussed what had been written, changed some of it and prepared for our discussion with the authors. We then met on Zoom with the authors and discussed our responses.

We have organised this review as questions and our ideas and responses to each of them. Because this review was the result of a discussion between the three of us we have organised it as questions and comments rather than as separate responses from each of us though sometimes we use particular quotes from one of us. We have included in italics a summary of the responses from the writers of the article following our Zoom meeting.

We were given a choice of five articles to review and chose the one on the experiences of women with menopause because as women who had all experienced menopause we thought we knew something of the topic and we were all interested in learning more. We all thought there was a lack of information about menopause and particularly about the views of women with learning disabilities. It was really good to see an article in which researchers were listening to women with learning disabilities.