Intellectual Disability in the Twentieth Century: Transnational Perspectives on People, Policy and Practice Jan Walmsley and Simon Jarrett (eds) Policy Press, 2019, 216 pp, hardback £75; e-book/paperback (January 2021) £26.99
This book, edited by Jan Walmsley and Simon Jarrett (editor of Community Living), is a remarkable achievement. As they say in the introduction: “We believe it is the first of its kind to take a historical view of policy and practice in intellectual disability across continents, and we are certain it is unique in its emphasis on the impact on individuals.”
It covers 12 countries: Australia, Austria, Czechoslovakia/Czech Republic, Ghana, Greece, Hong Kong, Hungary, Iceland, New Zealand, Taiwan, the UK and the US. Contributors tell their countries’ stories, examining major changes in policy and their effects on people with intellectual disabilities and their families. They were also asked to tell life stories, where possible with the voice of the people themselves.
Although the chapters are very different, there are some common themes. The stain of the “science” of eugenics, first advocated in 1863, was strong in the Anglosphere and much of Europe. The chapter on Austria illustrates how the nadir was reached by the Nazis. Sterilisation and extermination of the “unfit” and “unworthy” were the most extreme examples of the drive to manage and eliminate lives deemed to have no value. It was only in the latter part of the century that sustained efforts started across the world to move away from institutionalisation (and worse) to valuing people.
The chapter on Ghana shows the calibre of the contributions. There had been no authoritative history until now – the condition barely had a name in the country until the late 20th century. The unrelenting negative view of intellectual disability has its roots in spiritual beliefs. For example “those with Down’s syndrome are labelled ‘nsuoba’ meaning spirit or water children… A child born with disabilities in a village would often be left to die in the bush or by the river. This was seen as allowing the child’s spirit to return to the spirit realm, so it could be reborn in a ‘proper’ body”. The chapter tells us that, regardless of which gods are worshipped, disability is seen as a punishment and a reason to exclude people, especially those with intellectual disability, from community life. “Change has been spearheaded by parents. Parent organisations… have been a mainstay of support and advocacy [and] educating and supporting parents themselves,” the chapter adds. My one reservation is about the cover. I suspect the publishers thought a headless woman holding a grey balloon would say something about how intellectual disability is perceived. I was just perplexed.
As a child in the 1950s, I remember the secrecy and whispering about a local family whose “mentally handicapped” child was sent to an institution. I understood it was something that brought shame on the family – it could only be seen as unfortunate. When, in the 1980s, we discovered my 15-month-old daughter had a learning disability, I had to deal with my own prejudices as well as those I was to encounter from others. Reading about the experiences of many thousands of people who have suffered greatly has been distressing, but it has helped me understand the weight of those prejudices; they are still around us, are universal and, as we know only too well, there are many battles still to fight.