Examining the history of Down syndrome

[img_inline align=”right” src=”http://padnws01.mcmaster.ca/images/davidwright.jpg” caption=”David Wright’s new book ‘Downs: the History of a Disability’ traces the social and medical evolution of the condition, while also shedding light on one of society’s most derided mental disabilities. Wright wrote the book during his last two year’s at McMaster, while serving as associate dean of humanities. File photo.”]For David Wright, public perception of Down syndrome has always been a deeply personal issue.

Wright's sister, Susan, was born with the condition in 1967, and raised during an era when cretin, imbecile and Mongoloid were still lingering terms. At the time, Canada was in the midst of an unprecedented cultural and political shift, and those with physical and mental disabilities were also struggling for equality.

“It was a period in which many parents with disabled children were attempting to integrate them into the regular school system,” said Wright, former associate dean of humanities at McMaster, and a current professor of medical history at McGill University. “They were met with a lot of resistance. Many people felt it was not appropriate or acceptable.”

Wright's new book, “Downs: the History of a Disability” traces the social and medical evolution of the condition, while also shedding light on one of society's most derided mental disabilities.

Written during his final two years at McMaster, the book explores much of the modern history surrounding Down syndrome – including its original classification system and subsequent methods of treatment.

The condition is named for John Langdon Down, the British medical superintendent who first identified some of the shared physical characteristics among those affected. Down coined the phrase Mongolism in 1866 as a way to distinguish those with Down syndrome from other European children – a classification based on racial hierarchy and perceived Asian inferiority.

During the mid-19th century, children and young adults with Down syndrome were often institutionalized or sent to a medical asylum, while integration with the general population was unheard of. As a result, Mongolism and similar language became widely accepted in various medical circles.

It wasn't until 1959 – when French geneticist Jerome Lejeune discovered the presence of an extra 21st chromosome in those affected – that public perception began to shift.

“During the 1960s, people became sufficiently uncomfortable with some of those older terms,” explained Wright. ”In England, the medical community officially adopted a new name, 'Down's syndrome.' In France, the condition was simply referred to as 'Trisomy 21.'” Many English-speaking nations use the word Down instead of Down's, although both are accepted.

Susan Wright eventually became one of the first women with Down syndrome to be married in Canada – a major societal hurdle. Susan and her husband, John Bell, currently live independently in London, Ontario.

To date, Wright's latest book has sold more than 1,200 copies internationally. The former McMaster associate dean recently held a private launch party at My Dog Joe in Westdale – the coffeehouse where he wrote most of what became Downs: the History of a Disability.

The book is available locally at Bryan Prince Bookseller (1060 King Street West), or via Amazon.ca.

Today, March 21, is World Down Syndrome Day. This year marks the seventh anniversary of WDSD, and the first time it will officially be observed by the United Nations.