Downs: The history of a disability

by David Wright

For 150 years, Down's Syndrome has constituted the archetypal mental disability, easily recognisable by distinct facial anomalies and physical stigmata. In a narrow medical sense, Down's syndrome is a common disorder caused by the presence of all or part of an extra 21st chromosome. It is named after John Langdon Down, the British asylum medical superintendent who described the syndrome as Mongolism in a series of lectures in 1866. In 1959, the disorder was identified as a
chromosome 21 trisomy by the French paediatrician and geneticist Jérôme Lejeune and has since been known as Down's Syndrome (in the English-speaking world) or Trisomy 21 (in many European countries). But children and adults born with this chromosomal abnormality have an important collective history beyond
their evident importance to the history of medical science.

David Wright, a Professor in the History of Medicine at McMaster University, looks at the care and treatment of Down's sufferers - described for much of history as 'idiots', - from Medieval Europe to the present day. The discovery of the genetic basis of the condition and the profound changes in attitudes, care, and early identification of Down's in the genetic era, reflects the fascinating medical and social history of the disorder.

Genres: Disability, History, Nonfiction, Medicine, Health

254 pages, Kindle Edition

First published May 25, 2010

About the author

Librarian Note: There is more than one author in the Goodreads database with this name.

This is David Wright, born 25 August 1965

Reviews

[Ioana · Rating 5 out of 5]

I’m a firm believer that in order to fully understand a subject you need to attentively look into its basic underpinnings and history, and David’s book does just that, opening the door to a fuller understanding of the syndrome. Although this is not meant to be a sociological study, I appreciated the author’s use of sociological imagination, since often times he doesn’t frame the burden of mistakes on individuals alone. Looking back, you may call today’s progress a triumph or a temporary subsiding of human nature due to resource abundance. Whichever way you see it, candidly or cynically, work is yet to be done in the field and we won’t soon run out of needing dedicated, compassionate psychologists and medical staff (be it for Down or other issues)
Just the other day or so, by happenstance I came across the heartbreaking post of a former high school colleague, who postnatally learned that her daughter had Down. She put the onus on conflicting views between her gynecologist (results signify low risk) and what she later found out is the geneticist take on the same test (values were verging on the level of moderate risks). She didn't find much solace with the medical staff who delivered the news without any regard to her feelings or her vulnerable state, if anything just pitying her. Luckily, the kid's father stood by her.
I felt really sorry for her experience with the Romanian medical system (and with the psychologist, too!). Her story is here, if you are curious https://www.youtube.com/watch?v=m9j09....
David’s book carries you from a chapter on the etymology of usual terms like `idiot’, `imbecile’ or `cretin’ to the neo-eugenic (which made me reflect back on Sloterdijk 'human zoo') practices of today. I took 8 pages of notes...excellent book! I think caring and trying to better our understanding of individuals with Down is a wonderful exercise of kindness.

P.S. To really drive home one of the points the author was trying to make, as I opened my course notes just a few minutes ago, I found the mention that 'The Down syndrome, also known as mongolism ...". Now I'm not one to police language, but using this infelicitous term, with a rotten foundation from the get-go, is a mistake. One thing we could do is teach its history and why it was used wrongfully, how Langdon Down averred that the syndrome was due to a spontaneous 'race-reversion', which among other things implied that there are 'lesser' Caucasian races (Mongols).

[Amanda White · Rating 5 out of 5]

It all comes together

It is important to understand the `why` and `how` behind where we stand as a society. If a person is interested in leading change and being a leader for those in the disability community, Wright puts together a wonderful timeline with description of historical context on the perceptions and rising views of society and cultural norms. This is a must read if the areas of disability is in your interest.

[Pam · Rating 4 out of 5]

I enjoyed the book, it is a bit more academically written than something I would normally choose, but readable and compelling. Anyone with an interest in Down's Syndrome, cognitive disability, or generally the treatment of vulnerable people from the Middle Ages on will find this fascinating.

[James Trent · Rating 5 out of 5]

David Wright has written a thorough and compelling overview of Downs syndrome. The book is appropriate for both the specialist and the lay reader.

[Steven Yenzer · Rating 3 out of 5]

Wright has provided an academic but highly readable history of society's treatment of Down Syndrome and intellectual disability. Not much in the way of personal stories, but that's not his goal.

[Liz Websdale]

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[Frank Spencer · Rating 5 out of 5]

This book gives a good history of this condition. It is somewhat textbook like, but there is a personal dimension, since the author has a sister with the condition. There is a good discussion of the current ethical issues revolving around genetic testing and intervention with genes.

[Courtney · Rating 4 out of 5]

Even though this reads like a PhD thesis at times, it's full of really interesting information. I always find it amazing how much has changed in medicine in the past 100 (or fewer) years.