John O’Brien, who has led the challenge to segregational thinking about learning disability, enjoys the challenges presented by a new book on community care and inclusion.
Community care and inclusion for people with an intellectual disability. By Robin Jackson and Maria Lyons, (Editors) Published by Edinburgh: Floris Books, (2016)
Unless continually renewed, ideals that motivate social learning – like the movement to replace custodial institutions with settings that offer active support for choice, participation and growth – degenerate into a succession of dead slogans pasted over more of the same impoverishment, exclusion, external control and maltreatment.
Renewal involves relentless questioning of assumptions, questioning grounded in openness to the actual experience of people with intellectual disabilities. Renewal is disruptive; openness can’t be taken for granted. Defences against discovering the limits of what we wish were true, facing demands to stretch farther and learn to do better, and recognizing the incompleteness of our understanding, all influence our perception. We need to intentionally create opportunities to look at what has become familiar to us through the eyes of people with different perspectives and experiences.
Robin Jackson and Maria Lyons have edited a helpful assortment of disruptions to the comfortable conclusion that progress has reduced good assistance to people with intellectual disabilities to technologies that can be prescribed, measured, monitored and managed. Contributors contest the meaning of community, question the actual experience of people assumed to be included and criticize the judgements of those in the mainstream of community care who act as if they alone know best.
Ways of living together
The chapters of the book that hold most interest for me recount lessons from Camphill, a federation of autonomous schools and intentional communities with people with intellectual disabilities founded around the world since 1940, when refugees from Nazi Austria began the first school near Aberdeen. I respect Camphill as I respect other intentional communities (such as monasteries and co-housing) that take a disciplined approach to allow those who freely join to discover and practise ways of living together – ways that develop people and benefit the wider community and the environment. Study and application of Rudolph Steiner’s esoteric teachings about economics, education, art, architecture, medicine, as well as teachings specific to the care of people with intellectual disability, shape and sustain Camphill’s struggle with questions of how people with significant apparent differences can thrive in each other’s company.
Unfolding Steiner’s teachings to meet the demands of a changing world – topics of study that occupy a substantial number of citizens beyond Camphill – give the movement a coherent, positive stance at some distance from common cultural assumptions. It is just this different angle of expression, of a common value on expanding freedom to live a meaningful life, that makes Camphill and these chapters, valuable. The chapter in which Lyons considers the move for access to work for people with intellectual disabilities by extending Steiner’s economic teachings, which decouple work from pay for all Camphill members, is a fine and provocative example.
Chapters on the application of lessons learned from life in Camphill in understanding democracy and equality, reforming education in China, and promoting Bhutan’s approach to Gross National Happiness demonstrate the flow of experiences, ideas and influences that result from Camphill’s openness and hospitality in sharing the life of its communities. A chapter that links everyday life in Camphill, as it influences and adapts to changes in the world around it, exemplifies awareness of the need for rigorous, continual reflection and renewal. Developing appreciation of the right to choice, for example, gives Camphill occasions for renewal.
These hallmarks – a struggle to share life as equals that transcends staff-client transactions; commitment to a way of living day-to-day that embodies the intention to renew economics, politics and culture, and therefore our planet, as a site for development of spirit; openness and hospitality– differentiate Camphill from the too many consistently failing efforts to congregate and control people, reproducing institutional life whether in facilities housing two or three or dozens.
Unfortunately powerful people may treat Camphill as if it were not, at its best, precious in what the life that those who freely choose to share contributes to our understanding of inclusive community. This confusion and the conflicts it can generate may account for an occasional defensive tone in the book that contrasts accounts of abuses and shortfalls in the practice of community services (which certainly are there to see) and the ideals of the intentional supportive community (which human fallibility can also compromise in practice).
The book is a hamper of other interesting perspectives, though unfortunately no accounts from intentional supportive communities other than Camphill. A historian traces the modern process that extracted people claimed for control and treatment by doctors, and contrasts the past 150 years of that regime with most of history, in which those who survived their impairments were seen as limited but harmless and largely included.
Researchers retrieve the missing voices of people with intellectual disabilities as they understand and seek belonging for themselves. A psychotherapist details the painstaking accommodations he makes to treat people with intellectual disabilities and analyses the widespread prejudice shared by too many of his colleagues. A pharmacist identifies health risks that follow a facile understanding of independence and choice.
There is a description of the possibilities and limits of social media. There are descriptions of progress in social policy in Australia’s National Disability Insurance Scheme and support to open employment in the US state of Vermont. A change agent and scholar of social movements examines the many functions the idea of community serves, and weighs its potential to motivate progressive action against the dangers that a positive halo will cloak neglect and isolation.
The challenge to my own open-mindedness is a chapter that computes – on the basis of the alleged realities of social life revealed by neuropsychology and primatology – that the preferred model of group homes for 10 to 15 clients (sic) is almost certainly too small to allow people to make friends and that groupings of 30 to 50 should be preferred. I struggle to make sense of this chapter’s argument as something more than a parody of professional overreach.
Benefiting from this book does not depend on agreeing with the variety of points and perspectives its diverse chapters present but on being willing to try on different perspectives. It deserves to be widely and thoughtfully read.