Words are fascinating. They convey both meaning and misunderstanding. The more exact their meaning the more useful they are. The Inuit people who live in Northern Canada, for example, have at least 50 words for snow and ice. They have words for ‘softly falling snow’ and ‘wet snow that ices the runners of a sleigh,’ for example. The Inuit population of words for snow evolved for practical reasons. It could mean the difference between life or death to know whether the snow-covered ice in front of you was fit to walk on or whether you would sink into the frigid water.

Love is another word that conveys a multitude of meanings. In English that one little four-letter word covers the territory of parental, sisterly, neighbourly, puppy, romantic and divine love and more. That’s why Sanskrit has 96 words for love and the ancient Persians had 80. And of course, there is French, the language of love, which has a variety of words and phrases to express the texture of what the single English word love doesn’t.

The ambiguity and lack of precise meaning of words is a serious issue in the disability world. For example, the term “Down syndrome” (ds) conjures images that range from happy and loveable to burden, deformity and suffering.  In reality, the term conveys more assumptions than facts. The word Down comes from the name of a mid-19th-century doctor who noted common facial features and physical characteristics among some of the people who lived in the asylum he was in charge of. Those common attributes are actually very few, the main one being an extra 21st chromosome. These characteristics don’t constitute a syndrome they constitute a list of maybes that may or may not be helpful. Naming it after a 19th-century doctor doesn’t tell us anything. The term is no more predictive of someone’s worth and contribution than expecting that Lucille Ball, the legendary tv star of “I Love Lucy,” would be a comedian because she was born with red hair.

That hasn’t stopped folks from acting on the inaccurate and misguided assumptions associated with those two words. A recent CBS documentary revealed that the country of Iceland is close to completely eliminating people diagnosed with ds. On average only two babies a year are born with ds in that country.

Even though genetic counseling is offered as a neutral service, some mothers in Iceland are opting out of the pre-natal screening. They believe it conveys the societal expectation that you will terminate your pregnancy if the extra chromosome is detected. “People are afraid of what they don’t know,” says one mother. Or of what they have been led to believe.

One of the few young women with ds left in Iceland was interviewed in the kitchen of an apartment she shares with her boyfriend by the CBS journalist. “They just see Downs. They don’t see me. I want people to see that I am just like everyone else.”

Including being loved and being in love.

In countless ways.

NOTES:

  1. There is an essential ‘unknowability’ about words and people. If we admit to that mystery then as long as the snow keeps falling, people keep falling in love and babies keep being born the quest for words phrases and terms to describe them should never end. That’s why I’ve relegated the abused and misused term Down syndrome to the lower case ‘ds’ pushing it one step closer to the trash heap. Then we would be obliged to describe each person, one at a time and on their own terms. Which is the way I like to be described. I bet you do too.
  2. See this CBC profile of Marie Webb a Nova Scotia fashion designer who has been invited to display her creations at this fall’s Emmy Awards gifting lounge. Oh yes, she also has ds.

EH!

Eradicating Down syndrome?  How about eradicating cancer or ALS or MS or diabetes? Down syndrome is not a big deal, my son is amazing. (Tamara Taggart)  So too is my daughter Liz.

Musical selection this post is Wonderful and Sad by Hawksley Workman. Support his music.

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