Staying Calm When You Educate People About Down Syndrome

For those who know me, I can be hot-tempered, saucy-tongued and not shy about telling you what I really think. I can still get that way, but after having my daughter, Erin, I have learned the value of staying calm.

For the first six years of Erin’s life, I really didn’t butt into people’s lives or try to speak out too vocally for my daughter. “Just keep us invisible and they won’t bother us.” However, a conversation I had with an acquaintance of my husband seemed to have flipped a switch. My husband and I were at a wine dinner with 100 other people and I sat next to a gentleman who had a fascinating life story. I was drawn into it, even talking about his fears of having a child with his wife because they were older when they started trying. He actually said, “My wife and I were afraid we would end up with a mongoloid.” When I heard that, all of my blood drained from my body. So many thoughts went through my head, but fortunately a quick, deep breath helped patience prevail. I said, “Actually, I have a daughter with Down syndrome, and that is how they prefer to be referred to now.” As I was doing an inner happy dance at my ability not to splash pinot noir into his face, he looked mortified and apologized profusely. I stayed calm and said, “I understand your concerns about having a child when you’re older. But, now that you are aware of how to refer to someone with Down syndrome, I’m sure you will continue to tell your story with that label instead of ‘mongoloid.’” He smiled and we kept talking for several minutes.

Since that day, I’ve gone out of my way to meet and talk to people with Down syndrome who are out and about or with their families. I recently ran for my local school board to help promote the importance of inclusion starting in school. While I did not win, I have found improvements in my daughter’s school experience as well as other students with disabilities. Parents of “typical” children approach me and talk about what a joy Erin is when they volunteer in the classroom. When we go to playgrounds on Saturdays, her classmates run to play with her. It’s such a great feeling.

That’s what it comes down to: a teachable moment. There are many people who just don’t know what they don’t know. Being calm and patient when trying to correct their misunderstanding can create a beautiful change. Don’t be afraid. Don’t try to be invisible anymore. Take a quick, deep breath, and help educate the world one person at a time about the joys and benefits of inclusion and acceptable labels.

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