Friday, April 20, 2012

Down Syndrome reads.........

Lots and lots of books out there for parents and children, but what if you want to find more scholarly info?  I started a search and came up with A LOT of books out there.  I would love to add them all to my library, if only I was a millionaire.  LOL.  Maybe slowly?  I just love books.

I ordered one on Amazon after reading a review in Lancet.  The title is "Downs, the History of a Disability."  I will let you know what I think after I read it.

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The review in Lancet states that the book is more a history of social views on Down Syndrome.  I am looking forward to reading it.

The Lancet, Volume 379, Issue 9825, Page 1478, 21 April 2012

Missing from history

19 prominent doctors wrote to The Lancet on April 8, 1961, advocating that the term “mongolism” be abandoned. It was the then Editor of this journal who chose “Down's syndrome”, which David Wright calls “the least descriptive—and perhaps the most conservative—of the five alternatives proposed”.
Histories of disability are important because they document how disability is not simply a biomedical phenomenon, but is something that is deeply shaped by cultural ideas, by social arrangements, and by social values. The implication is that the lives of people with disabilities could be different—and better—if only society was more inclusive and supportive.
Naively, I came to Downs: the History of a Disability hoping to learn about the lives of affected individuals in earlier centuries. But, of course, the lives of millions of people with Down syndrome have disappeared from sight, not because they were unimportant to their families and communities, but because they left no trace in the historical record. We cannot even draw conclusions about what Wright calls the “prehistory of Down syndrome”. Were the centuries before the arrival of medical labelling and special education a utopian age of acceptance and diversity? Or, more likely, were people with Down syndrome neglected, abandoned, and left to die?
Instead, this book offers us a history of social responses to the condition. The turning point was the 1840s, with the emergence of the mantra that “the idiot could be educated”. The heroes were reformers like Edward Séguin in France and Dorothy Dix in the USA, who fought to get people with intellectual disabilities out of prisons and workhouses, and into specialist schools and institutions where (in theory) they would be supported and protected. In England, the alienist John Conolly campaigned for specialist provision such as the Royal Earlswood Asylum in Redhill. It was here in 1858 that the young doctor John Langdon Down began his work.
More than 150 years earlier, John Locke had found “idiots” useful evidence for his claim that the human mind was a tabula rasa. In 1866, in an era obsessed with racial difference, Down identified a subgroup of his patients whom he claimed represented the reversion of Caucasians to earlier racial types: the “Mongol” was an example of atavism. Wildly wrong in his theory, Down had nevertheless for the first time correctly demarcated the syndrome that later was to bear his name. Perhaps the conclusion he drew—about the unity of the human species—was less racist than critics have suggested. However, in his practice at Earlswood, he demonstrated the fascination with diagnosing and classifying that modern advocates have denounced as unhelpful to the inclusion of children and adults with intellectual disability. Wright describes how, in 1868, Down resigned from his post under suspicion of corruption, going on to found a lucrative private institution which he ran with his wife. By extraordinary coincidence, his son Reginald's only son Jonathan was born with the syndrome.
Debates raged in the late 19th century about aetiology. Parental alcoholism, endocrine malfunction, tuberculosis, syphilis, brain damage, and uterine exhaustion were all blamed. This last idea, reflecting the observation that it was often late-born children who had the condition, came closest to the truth. In the early 20th century, hereditarian explanations began to predominate, again reflecting wider intellectual fashions. By 1949, the meticulous investigations of Lionel Penrose had confirmed the role of maternal age and laid the foundations of scientific understanding of the syndrome.
I learned much from this history: from the irony of Jérôme Lejeune (the Catholic doctor who took the credit for the discovery of trisomy 21) campaigning against selective termination, to the strange notion of trying to use Marmite as a dietary supplement to remedy the condition. Wright's book explores far more than could be discussed in a brief review: eugenics, intelligence testing, cytogenetics, social policy, normalisation, deinstitutionalisation, and changing cultural representations. While context is important, Wright too often slips from the specific to the general. For example, the discussion of Nazi euthanasia does not include Down syndrome statistics or life stories. Perhaps the book would have been better cast as a history of intellectual disability, with Down syndrome as a particular case study.
Notwithstanding this quibble, Wright has provided a fluently written account that offers an excellent historical introduction to the continuing tension between the inclusion and the elimination of people with disabilities: 150 years after Down's description, prospects of a cure remain remote, while the trend towards later motherhood means that the prevalence of the condition has barely dipped, despite amniocentesis.

Here is a few of the books I have found.  Have you read any of them?  What are your thoughts on how truthfully the concepts are presented?

The Politics of Down Syndrome

The Shape of the Eye: Down Syndrome, Family, and the Stories We Inherit (MEDICAL HUMANITIES SERIES)

Gifts 2: How People with Down Syndrome Enrich the World

Be gentle.

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