As we have stated elsewhere on this website, the aims of the Gynae Narratives Project are:

• to increase understanding of how radiotherapy impacts on the sense of sexual self and on social and personal lives, and
• to improve patient experiences of living with the social and personal impacts of radiotherapy.

We do this with a very strong commitment to the philosophies of feminist studies of science and technology, and feminist understandings of health. This means that we wish to develop our understanding of health through examining women’s social roles and lived experience, considering how outcomes for women and other marginalised groups, and their experiences of health care, are shaped by societal, political and economic influences.

This is not a new or novel way of approaching health research. It is founded on a strong history of activism and research in the Western world. The Women’s Health Movement (WHM) emerged during the 1960s and 1970s, during what was termed the ‘second wave of feminism’ – the first wave being that of the 1830s and 1840s where women campaigned for equal rights for women, predominantly the right to vote through Women’s Liberation Movement.

A key facet of the Women’s Health Movement was that women talked about and collectively explored their personal health care experiences. Through doing so they learned that their personal experiences were often shared by other women and that which had been understood as a personal experience was in many ways a political one – influenced by social, political and economic conditions. Many women experienced this as empowering and as validating experiences that had often previously been dismissed and ignored, and become invisible.

Hence, there is a long history of feminist activism that informs our project. A history that shows that through sharing of experiences and knowledge, women have been able to reclaim power over their own bodies and control over their own health and to challenge paternalistic assumptions about treatments and care. Paying attention to women’s reproductive rights, specifically access to birth control, improvement in abortion practices, treatment for breast cancer and care during childbirth, the Women’s Health Movement has changed care practices and influenced health policy and has generated new knowledge about women’s bodies.

An outcome of the early activism, was the influential book Our Bodies, Ourselves (OBOS), published in 1973 by the Boston Women’s Health Collective (1) . This book has been continually revised and has been published into 25+ languages. It is also available online https://www.ourbodiesourselves.org/. The book, and the movement that it reflects, is founded from women’s frustration and anger about not having a voice in their own health care. The movement has always sought to help women navigate healthcare systems, for example the US movement initially focused on attempts to legalise abortion (2). Written in colloquial and accessible language, and including attention to emotional wellbeing as well as physical health, the book built authority and solidarity for women in relation to their own health (3).

Members of the Women’s Health Movement used their own bodies and experience to illuminate the ignorance of standard accounts, for example by developing knowledge of female anatomy and sexual pleasure. Containing information about multiple aspects of women’s health and sexuality, the book encouraged women to celebrate their sexuality, and move towards active engagement in their sexual lives, opposing the dominant medical and social representation of women as passive and overly emotional. Our Bodies, Ourselves was a movement of resisting existing, dominant, biomedical understandings of women and their bodies. The knowledge collated and articulated through the movement undermined assumptions and exposed areas of ignorance about women’s health and women’s bodies. The movement sought to extricate women from oppressive systems and to transform all of society through creating ‘liberatory knowledges’ that empowered and validated lived experience (4). The Boston Women’s Health Collective, now renamed Our Bodies, Ourselves, continues to develop and promote evidence-based information on girls’ and women’s reproductive health, using the tag line ‘Information Inspires Action’.

The Women’s Health movement also uncovered numerous accounts of “wilful ignorance”, as described by Nancy Tuana (4). Wilful ignorance, an ignorance that requires active unknowing, is used to describe the active ignoring of the oppression of others and one’s role in that. For example, involuntary sterilisation of women of colour and disabled women (5). However, a strong critique of early second-wave WHM groups is that they consisted of primarily middle-class white women focussing on specific versions of the female body. Issues of White privilege were not addressed until the 1980s when women of colour began creating more local organisations to focus on health-related issues, for example the National Black Women’s Health Project (6).

Feminist approaches continue to prioritise the use of lived experiences in order to promote consciousness raising, generate accessible information and models for navigating and challenging unequal and damaging health care systems and for improving the health of all. Informed by the principles of this powerful and long-standing health movement, the Gynae Narratives Project aims to increase our understanding of the impact of radiotherapy on the sense of sexual self and on the social and personal lives of those being treated. Through the collection of journal entries, or narratives, we intend to highlight experiences of radiotherapy for gynae cancer in order to illuminate areas of current ignorance in policy and care practices. In doing so, we recognise the ‘situated’ nature of experience: that each narrative is personal, partial and represents each participant’s own way of being in the world.

In 2019, OBOS co-author Judy Norsigian wrote of the “importance of collaboration among those who work both inside and outside the powerful institutions whose policies shape our lives” (2). In the Gynae Narratives Project, we work with patient partners, our collaborators at Clatterbridge Cancer Centre and with professionals based outside of this organisation in our steering group to bring inside and outside together. Every member of the group brings with them their own personal experience and it is through these that we aim to generate information that inspires action.

References
1. Boston Women’s Health Collective. Our Bodies, Ourselves A Book By and For Women: New York: Simon and Schuster; 1973. The book was first published as a pamphlet in 1970 called Women and Their Bodies.
2. Norsigian J. Our Bodies Ourselves and the women’s health movement in the United States: Some reflections. American Public Health Association; 2019.
3. Wells S. Our bodies, ourselves: Reading the written body. Signs: Journal of women in culture and society. 2008;33(3):697-723.
4. Tuana N. The speculum of ignorance: The women’s health movement and epistemologies of ignorance. Hypatia. 2006;21(3):1-19.
5. Dreifus C. Seizing our bodies: The politics of women’s health. New York: Random House; 1977.
6. Nelson J. More than medicine: A history of the feminist women’s health movement: NYU Press; 2015.