Both these BILD publications are excellent and make good companions when read in sequence—preferably in the order given above.
CROSSING BOUNDARIES is about change and continuity in the history of learning disability. The editors are distinguished academics in the field of emancipatory and life-story research and are numbered amongst the nineteen contributors to this highly readable and interesting story. This story describes historical developments and mindsets and illustrates how they influenced public opinion concerning the populations with intellectual disabilities.
This book can be fruitful, constructive and stimulating for a wide variety of readers. It integrates different accounts from researchers interested in disparate, but related questions. It highlights the ways in which crossing disciplinary, political, intellectual and personal boundaries is both necessary and achievable.
This book asks pertinent questions:
- How have boundaries been created and by whom?
- What have been the social and political implications of drawing or crossing boundaries in different locations at different times?
- What have been the emotional impacts of boundaries?
- Who should be writing the history of learning disability? Whose history is it?
- Is the history of LD the province of academic historians or the property of people with LD themselves?
As Mark Jackson points out in his introduction, the boundaries to be crossed are between people with and without learning difficulties and between different academic disciplines and practices. Both are still being carefully drawn and vigorously defended. If we are to give a voice to anyone interested in the history of learning disability, we need to constructively cross contemporary boundaries ourselves, and to develop an approach to history that integrates different stories at many different levels.
Simone Aspis argues that the process of researching and writing history has too frequently perpetuated the social and political boundaries that are under analysis, carelessly exploiting the lives of people with LD for professional purposes. As a result, as Simone points out, people with LD have been excluded from research, refused access to funding and often denied the power to write their own histories.
David Barron’s chapter illustrates how boundaries impact, both physically and emotionally, on people’s lives. He also challenges us to expose the multiple political, social and cultural forces that have created those boundaries.
The jointly-written chapter by Mabel Cooper and Dorothy Atkinson compares Mabel’s account of her life with the account found in her hospital case notes. The approach used in this chapter was really good and shows us that by combining experiences and expertise, academics and people with LD can produce shared lives.
It is necessary to explore and also to expose the ideology, origins, politics and implementation of legislation such as the 1913 and 1927 (UK) Mental Deficiency Acts and the ways in which medical categories and labels were created for a population which were previously categorised within the social parameters and mores of the time.
Patricia Potts demonstrates the manner in which institutional buildings and regimes both reflected and reinforced dominant ideologies. Many border crossings are recorded in this book. Sheena Rolph charts the life of Alice Chapman—a story that proves to us that strongly constructed boundaries are not necessarily impermeable.
Duncan Mitchell highlights the role of nurses and other carers when he points out that for many years nurses themselves occupied an ambiguous social and professional position. They shared the same institutional space as the people they cared for; consequently they were marginalised from the rest of the nursing profession. Duncan emphasises that nursing history must be retrieved in parallel with that of people with learning difficulties.
In the 1970s, the political landscape of intellectual disability began to change and the advances over the past thirty years have been phenomenal. The kick-start for much of this advancement was due to the creation of Mencap and similar associations in which parents went public about their children with learning disabilities and demanded justice. Now history is at the point of self-actualisation, of self-advocacy and the rights of full citizenship.
The uniqueness of the wonderful book GOOD TIMES, BAD TIMES brings us to ‘where it’s at’ when women with learning difficulties tell their stories. A number of this book’s contributors and editors overlap from CROSSING BOUNDARIES.
GOOD TIMES, BAD TIMES was originally conceived by Michelle McCarthy and Jan Walmsley in 1995 when they discussed the possibility of creating a rounded picture of the experiences of women involved in learning disability services. What finally emerged is a wonderful example of collaboration between the professional women and the women with learning disabilities.
The editors describe how involving women with learning difficulties in the actual writing of the book changed everything. It changed the process of writing and it shifted the whole style, content and design of the book. It proved to be an empowering process all around, showing them all that, whatever the problems and pitfalls, women with and without learning difficulties can work together collaboratively to produce a book which speaks in many diverse voices about women’s experiences.
A feature that I personally loved about this book was the easy-to-read version of every chapter. My immediate reaction was ‘Why on earth had we never thought of this before?’. I know that from now on, everything we do must have an easy-to-read version, complete with illustrations.
The entire gambit of life is in this book—identity; fighting back; unfairness; relationships; hardships; friendships; loneliness; abuse; happiness—and above all—rarely being given the full picture. The chapter on death and bereavement gave a particularly clear illustration of how the very personhood of a young woman with learning disability can be overlooked. The fact that many of these stories involve well-intentioned professionals is a sobering thought for all of us, and tells us much about the focus of the various mindsets within the health services.
This book, more than any other I have come across so far, highlights the absolute necessity for one-to-one, person-centred systems and structures that, a) relate to each individual, and b) empower their identity and sense of self-
Read these books. They put all the rest in perspective—and let’s start moving on from there.