Many parents struggle with how to talk to their kids about disabilities, according to Michelle Sie Whitten, executive director of the Global Down Syndrome Foundation.
In 2009, the foundation began holding the “Be Beautiful Be Yourself” fashion show in Colorado to benefit the Linda Crnic Institute for Down Syndrome, and to highlight the abilities of people with Down syndrome.
“We wanted to put the paradigm on its head and make the person with Down syndrome the center of attention,” Whitten said. “You have a person with Down syndrome . . . paired with a Hollywood or sports celebrity, rocking the runway.”
I recently spoke with Whitten, whose 10-year-old daughter Sophia has Down syndrome, about common misconceptions and how parents can teach their children to have empathy, respect and compassion for people with disabilities. Here are edited excerpts from that conversation.
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Q. Tell me about your daughter.
A. She’s like any child, any typical child. She really enjoys being with her family, she loves being with her friends, she loves anything associated with school and the fun things at school. . . . She loves ballet. She’s taking piano lessons, and she likes it a lot. Not as much as ballet, but she certainly enjoyed showing off at her first recital. She loves food (particularly spaghetti and meatballs and sweet and sour spare ribs) and likes to travel. . . . All of her desires and likes and interests are very similar to any kid, but of course she does have some challenges as well.
Q. What are the most common misconceptions people have about Down syndrome?
A. There are so many. There’s this idea that our children can’t learn, that they can’t speak well, that they are difficult to manage in a school or sports setting. There are even physical stereotypes, that they all look alike, with their tongue hanging out, and they drool. . . . People think they can’t have a job, get married or go to college. . . . When people with Down syndrome didn’t have access to medical care and were put in institutions, in the 1980s, their life expectancy was 28. With people growing up in their homes and being provided medical care and going to local schools, today the average life span is almost 60 years.
Q. What do you wish parents would tell their children about Down syndrome?
A. A person is not a label, and Down syndrome doesn’t define them. First and foremost, it’s a kid that you like or find challenging for whatever reason. Everyone has their own strengths and challenges, their own kinds of intelligence. . . . We often talk to parents who say, “Your sister or brother can learn that, but it may take longer for them.” The big question is, “Is that because of Down syndrome?” And they say, “It could be, or it could just be how your sister learns.”
We encourage parents not to use language that provides limitations or negative stereotypes, like they'll never do this or they'll die early or never learn math or how to make change.
Q. What should an adult say to the parent of a child with a disability?
A. When Sophia was born, I had some of my friends confide in me and say they didn’t know what to say. Sophia was giggling or grabbing things or commando crawling, and people weren’t saying what they said with other babies. They’re afraid it will insult you. It won’t. It will make you feel good to provide that baby with all the same accolades and encouragement you provide any baby. That’s what the parents — and even the child — need to hear. When the baby is born, the first thing you say is congratulations and ask about the baby, while keeping in mind that possibly the mom is going through a bit of a depression. Keep it in context, but still treat the child like a typical baby. . . .
A friend of ours was shocked, then said, “You’re going to have a different experience, but it’s going to be great, just like any kid.” . . . For those who had planned a child with the person they love and they care about, that baby is still 50 percent you and 50 percent him, and you’re going to see that more than you see Down syndrome.