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Count Us InReview - Count Us In
Growing Up with Down Syndrome
by Jason Kingsley and Mitchell Levitz
Harvest, 2007
Review by Andrew Jahoda, Ph.D.
Apr 29th 2008 (Volume 12, Issue 18)

This is a new edition of a book which gives voice to the views of two young men with Down Syndrome as they grow into adulthood, in conversation with each other and their parents. They talk about a range of topics, from school and friendship to becoming independent and politics. There is also a new ‘afterword’ to this edition, with a short description from each of the men and their mothers, bringing the reader up to date with recent events in their lives.

The book provides an insight into the lives of two remarkable men, who challenge assumptions that might be made about the potential of people with Down Syndrome. One of them had an early career in children’s television followed by several film roles as a young adult, giving him a high profile in advocating for the rights of people with an intellectual disability. Providing a positive account of these men’s lives is in itself worthwhile.  However, the greatest interest lies in the subtleties and contrasts implicit in the accounts. Mitchell’s irrepressible optimism, highlighted by his wish to run for President of the United States and stories about high profile accolades, come alongside a continuing awareness of the negative impact of disability. Both men have experienced discrimination and realize that they will not necessarily be afforded the same life opportunities others, for example in terms of relationships or having children.  Reading these men’s discussions about their lives and aspirations indicates the complexity of concepts such as resilience and vulnerability.  The same social awareness that made their achievements meaningful underpinned a sense of difference that seemed, at times, to cause hurt.

Beyond the broader awareness of self, the other key theme to emerge from this book is the importance of others in these men’s lives. It is somewhat paradoxical that the foreword emphasises a very American notion of self-determination, while in reality the apex of their achievement is that they live in their own houses as self-supporting tax payers. The book itself is the result of a collaboration between these two men, and the discussions were facilitated by their parents. Moreover the ‘afterword’, bringing the new edition up to date, emphasises the importance of family and friends, and their continuing need for support to lead fulfilled adult lives. This should not necessarily be viewed as individual weakness, but as testimony to what can be achieved through a sense of shared responsibility, both in terms of personal relationships and government policy.

Ultimately, dipping into this book could be helpful for people training to be professionals or for families of children with Down Syndrome, wondering what the future might hold for their offspring. The readers will come to understand that these men were socialised into the same world as everyone else, and as such they will share most of the same views and aspirations, feel a sense of pride at their achievements and be aware of their weaknesses. Unfortunately this very sense of ordinariness is also the book’s limitation, as anyone’s lengthy story about everyday life can eventually become a little wearisome, making it difficult to sustain the reader’s interest throughout.

 

© 2008 Andrew Jahoa

Professor Andrew Jahoda is Chair of Learning Disabilities, Section of Psychological Medicine, University of Glasgow. In addition to his University post he also works as a clinical psychologist in community based services for people with intellectual disabilities. His research in this area spans the last twenty five years he has published on a range of topics including community participation, stigma and mental health.

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