Having a Child with Down Syndrome Part III: New Speak

Copyright © 2009 Steve Hawley, All rights reserved.

Here’s a scene I’d love to see on House, MD someday:

House enters a clinic exam room and sees a young adult patient with Down syndrome.

HOUSE
What’s your problem?

PATIENT
I’m sick. Why are you so sad?

HOUSE
(examining the patient) I’m in pain.

PATIENT
Why?

HOUSE
I was shot. Why are you so happy?

PATIENT
I had heart surgery. I had Leukemia. Every day is a gift.

HOUSE
(checking the patient’s ears) You’re an idiot.

PATIENT
Mongoloid idiot.

(House raises an eyebrow)

PATIENT
I’m a Mongoloid idiot. That’s what Down called it, but I like to be called a “person with Down syndrome”

HOUSE
You’re a person with an ear infection. Here’s a prescription for antibiotics. Take it for the full two weeks.

So where does this come from? Down syndrome has had a number of different names. It started with John Langdon Down who published a paper describing a set of physical characteristics that he found to be consistent with particular patients at the asylum where he worked. They reminded him of people who lived in Mongolia, so he called them Mongoloids or Mongoloid idiots. This term was more or less in place in the scientific community until the 1960’s when the condition was separated from the racial slur and called Down’s syndrome and later in the US, simple Down syndrome (capital D, lowercase s, no apostrophe). In more clinical terms, it’s called Trisomy 21.

This is because when gametes are made, in the stage of meiosis, one chromosome pair doesn’t separate, so instead of 23 single chromosomes, the 21st chromosome remains a pair. When the two gametes join, the 21st chromosome is in triplicate instead of a pair, hence Trisomy 21.

So where did all these names come from? Why the changes? Idiot has clear modern connotations – but historically it comes from the Latin idiota which was a lay person. Like many words, meanings change over time. Something meant to be a polite term, a euphemism, can be turned into an insult with the right intonation or with a sense of exclusion. Mongoloid idiot is a twofer in that sense. Similar things have happened with the word ‘retarded’ now replaced with ‘delayed’ or the ungainly ‘cognitively impaired.’

So in being introduced to Alice, I was given a first hand lesson in “person first language”. I wasn’t totally unfamiliar with it – I went to Oberlin and political correctness was de rigeur. The sense is that in speaking about a disability, the phrasing should start with the person, then follow with the disability. For example, you would say “a man with diabetes” instead of “a diabetic [man]”. The idea is that with the person first, the emphasis naturally falls on the person and not the disability. It felt clumsy at first, but I’ve become acclimated to it, and it does work. After all, you wouldn’t call someone who broke their arm a broken arm girl, unless you wanted to sound vaguely demeaning.

When I was teaching, I had a lot of kids who bandied about the word ‘retarded’ pretty heavily. I was always worried that I’d open up a can of verbal whupass, but I usually quietly asked the student to stay after class for a minute and showed off pictures of my daughter and then drove home the point that in all likelihood my daughter would be retarded and I really didn’t want to hear that word pejoratively again. It seemed to work for everyone involved. Some people just prefer to say that “words are just words”, but the people who say that think about some of the fundamentals of communication. The second worst way you can insult someone is to accuse them of something they aren’t. The worst is to accuse them of something they are.

The constructive response in many cases is to accept the pejorative and turn it around and that’s why I’d like to see that scene happen in House. It would tickle me to no end.

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