In 1992, Women First, a conference for and about women with learning disabilities, was held in Nottingham.
Academics Jan Walmsley and Michelle McCarthy were instrumental in its planning, seeing it as an opportunity to shine a spotlight on gender issues, a dimension that they felt was missing from policy and debates regarding people with learning disabilities.
In the wake of the conference’s success and keen to continue exploring the intersection between sex and learning disability, the pair developed a book proposal.
With this belief in the value of inclusive research, the book was conceived of as a participatory work; academics would edit and drive content, collaborating with women where appropriate, to create an edited volume of essays to inform policy. International in scope, it was to be principally by academics for academics.
What emerged was something quite different.
Inspired by researcher and policy adviser Gerry Zarb’s 1992 call for emancipatory rather than participatory research – where subjects do not merely contribute to research but drive every aspect of it – Walmsley and McCarthy involved learning-disabled women from the beginning.
Instead of being passive providers of their life stories, they were active contributors, attending and chairing meetings of the book’s working group, influencing the purpose, design and layout and editing each other’s chapters.
The aim was to “co-edit and co-author a book by and about women with learning difficulties with women with learning difficulties” so “the power of the academic gaze was at least tempered by sharing it with some people who were usually gazed upon”.
Learning-disabled women were therefore recruited, with Mabel Cooper, Gloria Ferris and Mary Coventry the core members.
In 1996, when Cooper began chairing the meetings, the book’s direction and intended audience began to evolve, with an increased emphasis on inclusion and accessibility.
The book was to be for everyone; people with learning disabilities needed to understand its content, whether they read it or had someone read it to them.
Different stories
Some stories were recounted with the aid of pictures, and diversity of tone was encouraged because “stories are told for different reasons, so this book could have different stories”.
At the same time, meetings and minutes were to follow the same principle, using pictures and simple language to ensure everyone understood them.
Issues such as self-esteem, sexual abuse and how non-disabled people and men are treated differently are tackled unflinchingly and honestly
Meetings could be acrimonious at times, the key flashpoints being the purpose and intended audience of the book. These lessened as the project progressed and the fruits of discussions became more tangible.
The learning-disabled women were empowered by being in control of the process of sharing their personal stories and by having the opportunity to discuss them with their peers.
By the same token, non-learning-disabled academics learnt practical lessons about inclusive research and the value of being a facilitator rather than an author.
As academic Dorothy Atkinson observed: “The process of writing the book has been as important as the product.”
In 2000, Good Times, Bad Times: Women with Learning Difficulties Telling their Stories, was published by BILD. Life stories are divided by theme, and it highlights the discrimination experienced by individuals who are both female and have a learning disability.
Issues such as sexual abuse, self-esteem and how men and non-disabled people are treated differently from learning-disabled women are tackled unflinchingly and honestly.
What had started out as an academic how-to book became a book of chapters with key messages – points each author wanted people to take away and think about. Contributors believed their stories, often deeply personal, could “change the hearts and minds of key people in their lives, and in the lives of other women”.
Further reading
Atkinson D, McCarthy M, Walmsley J, Cooper M, Rolph S, Aspis S, Barette P, Coventry M, Ferris G (eds). Good Times, Bad Times: Women with Learning Difficulties Telling Their Stories. Kidderminster: BILD; 2000
Walmsley J. Involving users with learning difficulties in health improvement: lessons from inclusive learning disability research. Nursing Inquiry. 2004;11(1):54–64
