Monday, September 17, 2012

Carrie McLaren: Learning the Language of Special Needs

by Carrie McLaren from
When my youngest daughter, Molly, was born with Down syndrome in 2010, I knew absolutely nothing about the special-needs world. It was an entirely new place for me, and besides the fear and shock of her diagnosis, I was scared for what the future held for our family.
In the months following Molly’s diagnosis, I wanted to educate myself on the language associated with Down syndrome. It was important to me to learn right from wrong and the proper usage of terms, but also understand how to help others come to terms with Molly’s condition.
As we’ve grown as a family, I’ve found it therapeutic to talk with others about Molly’s diagnosis. Yet, I’ve noticed there seems to be an uneasy feeling when others talk about Molly’s condition. It’s not a fear of asking questions or loving Molly — there’s certainly no shortage in that area. It’s the not knowing of how to actually refer to her condition.
The National Down Syndrome Society site’s preferred language reference guide is a wealth of information for a mom like me, new to the special-needs world.
And based on the knowledge I’ve gained from them, here’s my gentle introduction to the preferred language when referring to individuals with Down syndrome (or any disability for that matter).
People don’t “suffer” from Down syndrome and they certainly aren’t “afflicted” with it either.
Down syndrome isn’t a disease; you can’t “catch” it. It’s a chromosomal condition. In fact, there are 400,000 Americans living with Down syndrome.
While many times it’s referred to as Down’s syndrome, the preferred American usage is Down syndrome. English physician John Langdon Down characterized the condition but did not have it.
Individuals with Down syndrome (and any disability) should be referred to as people first. Always. Rather than “a Down syndrome girl” or a “Down’s child,” the proper wording should always be “a child with Down syndrome.” No exceptions.
This last one is the big one for me. A person should never be labeled by his diagnosis or condition.
While I understand that some may see this as trivial, to a parent of a child with special needs it’s extremely important and somewhat personal, too.
I want my daughter to be recognized as an individual, not by the fact that she just happens to have an extra chromosome.
I believe a “people-first language” should be applied to all people of all walks of life, not just individuals with Down syndrome. Everyone deserves the right to be thought of as a person and not as his disability.
I don’t feel it’s my place to correct others when they reference it incorrectly, because honestly before Molly was born I didn’t really know the “proper” way either. The only way to strengthen a community is to educate a community.
I may not be an expert in much, but I’m a mom raising a child with Down syndrome. I like to think that makes me an expert in love, understanding and kindness, too.


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