“Down syndrome is not a burden. How people react to it is.” – Stephanie Holland, mom of a son with Ds
We are thankful that the world in which our daughter is growing up is more educated about Down syndrome, and does not usually react negatively to her. As recently as the 1980s, however, babies with Ds who did not die from untreated medical conditions or abortion, were usually institutionalized. They were not seen out and about in the world, contributing to society as they are capable.
That lack of awareness in recent times causes some to react negatively to Ansley’s Ds – and yes, they are mostly adults. That is hard to take. Most of the time, the person just stares. Sometimes, there is a whisper when we walk past. Sometimes, a look of pity or even irritation.
I’ll never forget the first time I heard a man tell the young child with him in the restaurant that Ansley was “just a little retarded girl”. She was still a baby, and I felt as if I had been kicked in the stomach. I couldn’t even respond to him. Now? He would get a cheerful earful about the inappropriate use of the “r” word!
Which leads me to the topic of labels. No one likes to be labeled. Ansley is a person. She happens to be a person with Down syndrome. She is not a “Downs child”, a “Down syndrome child”, “Downs” nor “retarded”.
She is not a diagnosis, she is a person.
So, please encourage others to clean up their language when referring to a person with Down syndrome, and that includes yourself if you just didn’t know, thankuverymuch.
Here are some words we use to describe Ansley: Our daughter, the best little sis, a granddaughter, niece, cousin, friend, 6th grader, basketball and tennis player, music lover, dancer, comedienne, pistol, heck-raiser, snuggler, swimmer, dock-jumper, jet-ski rider, hard worker, thinker, joy-giver.
You can call her any of these, but you better not call her “Down” ’cause she’s so UP.
“Be kind and tender-hearted to one another…” Ephesians 4:32
About the author: Susan Lewis Ellis grew up in Habersham County. Her parents are Rev. Furman and Jeannette Lewis of Clarkesville. Susan and her husband, David, are the proud parents of daughters Lila and Ansley. The family lives in Venice, Florida. In observance of National Down Syndrome Awareness Month, Susan wrote a series of articles for Now Habersham about her daughter Ansley. You can read all of her articles by clicking on the links below.
The only disability in life is a bad attitude
Ellis: My child is not a diagnosis, she’s a person
Upside down sunglasses and fairy wings
