Dr. David Wright and the history of Down Syndrome

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First aired on Quirks & Quarks (19/11/11)

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There was a time, not so very long ago, when doctors used to refer to people, whom we now call mentally challenged, as imbeciles, cretins or morons. And we hid them away in places like The Institution for Feeble Minded Children or the National Asylum for Idiots.

The most common reason that thousands of children were locked away in those asylums and institutions, was that they had what we now call Down Syndrome -- a condition that results from having an extra copy of chromosome 21. But before the world learned of the genetic causes of Down, just over 50 years ago, it was universally known as Mongolism, and the people with the condition, Mongoloids. They were shunned, ridiculed, locked up and often sterilized.

Much has changed in the past five decades, both in terms of our understanding of the genetics of Down, and our attitudes toward people with Down. But according to Dr. David Wright, professor of the history of medicine at McGill University, our attitudes may not have changed as much as we think. Dr. Wright has just written the first history of the syndrome, called Downs: The History of a Disability, and he spoke with Bob McDonald about the book and his own connection to Down Syndrome on Quirks & Quarks over the weekend.

Like many people who have devoted their careers to research developmental disabilities, Wright has a personal connection to Down Syndrome: his younger sister was born with it in 1967. "I grew up around it, and volunteered at what was then called the Local Association for the Mentally Retarded," he said. "Developmental disabilities were always something I was extremely familiar with, and Down Syndrome was very close to me personally."

The language that was once used to describe people with Down Syndrome -- words that include "idiot", "imbecile" and "mongoloid" -- often sounds downright cruel to our modern ears, but Wright says it's important to take these terms with a contextual grain of salt. "One has to understand language within a historical context," he explained. "The term 'idiot' goes back several centuries and had both a legal and medical meaning, and was relatively unproblematic until the late 19th century when it began to have quite pejorative connotations."

In fact, the now perplexing term "mongoloid" was invented by the very man for whom Down Syndrome was named: John Langdon Down, a English physician who worked as the superintendent at an asylum for what we would now call developmentally disabled children (but who were then dismissed as idiots).

He began to classify the children under his watch, and his interest in the anthropological theories of the time led him to construct a racial topology. "He noticed that there were these clusters of children who he thought looked quite similar, and who he classified as being 'of the mongol race,'" said Wright. "He began writing papers, and the term caught on with superintendents of other asylums, and it continued into the 1970s."

Down has since been criticized for his reductive racial profiling, but he was actually extremely progressive for his time, according to Wright. "He was trying to fit his theory about 'mongolism' into the greater anthropological debate of the era."

There were two major events that helped in de-stigmatizing people born with Down Syndrome. The first was the scientific discovery by Jerome Lejeune that it is a genetic disorder, and not caused by poor parenting, syphilis or drinking during pregnancy. The other was the move away from long-stay mental hospitals. "People began to question the purpose of long-stay institutions, and there were a number of scandals associated with these institutions," explained Wright. "People began to experiment with community living."

Of course, changing attitudes has taken decades, and we're still in the midst of challenging debates about Down Syndrome -- especially since we now live in an age where pre-natal screening can inform parents if their fetus will be born with Down Syndrome. "I've tried to introduce the contradictions in my book," Wright said. "On the one hand, we are much more socially accepting of individuals with Down Syndrome than we have been in the past...but on the other hand, the rate of abortion is still about 80 or 90 per cent for those who get a positive test. So are we really more tolerant or not?"






Down syndrome

Downs: The History of a Disability

by Dr. David Wright

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From the publisher:

"For 150 years, Down 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 Jerome Lejeune and has since been known as Down 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 of History at the Institute for Health and Social Policy, McGill University, looks at the changing social responses to Down Syndrome from Medieval Europe to the present day in the first ever history of Down Syndrome."

Read more at Oxford University Press.









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