Growing up, I was never really exposed to children who had disabilities. The kids in my elementary school in the 1970s who had Down syndrome, autism or cerebral palsy were in a separate classroom, and we rarely saw them. And while I remember very clearly my parents talking about race, religion and sexuality, we never talked much about disabilities.
Sure, we were told that it wasn’t polite to stare, or ask a lot of questions. But that was the extent of the conversations.
We’ve come a long way. Now, many children with intellectual or developmental disabilities are in the same public school classrooms as their typically developing peers, for part, if not all, of the day. There are entire months set aside for autism and Down syndrome awareness, and plenty of blogs out there about parenting a child with disabilities. It’s become part of the mainstream.
But because we didn’t grow up with a lot of exposure to people with different abilities, many parents today struggle with how to talk to their kids about disabilities, according to Michelle Sie Whitten, the executive director of the Global Down Syndrome Foundation.
“There’s this dark period in our history where anyone who was disabled was put into an inhumane institution,” said Whitten, who lives in Denver. “They lived really tragic lives, and they died early, tragic deaths. What that meant for me growing up was I never met a person with Down syndrome. How, as a parent, do you explain something that you don’t know about or something that was hidden?”
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. The group added a show in Washington in 2011. This year’s event is scheduled for May 7 at the Mayflower Renaissance Hotel.
“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 on a professional catwalk, dressed to the nines, 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 about Down syndrome and how parents can teach their children to have empathy, respect and compassion for people with disabilities. Here are edited excerpts from that conversation.
Tell me about your daughter.
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.
What are the most common misconceptions people have about Down syndrome?
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’s even physical stereotypes, that they all look alike, with their tongue hanging out, and they drool. There’s an idea out there, even today, that somehow the mother in particular did something wrong in her pregnancy. People think they can’t have a job, get married or go to college. We’re really talking about two different syndromes. 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 lifespan is almost 60 years.
Why is it hard for parents to talk to their children about how to treat people with disabilities?
In the U.S., the primary reason is because of this sad history we had for people who are differently abled…. A general reason parents struggle to tell their typical child how to interact is because they don’t have that experience. And even if someone has some experience, you don’t know what to tell your child about anything. It’s all new. It’s kind of trial by error. The other reason I think it’s a challenge for parents is because the situations are so different. How do you react to someone who looks different, acts different or is doing something that’s not appropriate? It’s not that different than responding to someone who doesn’t speak English.
What do you wish parents would tell their children about Down syndrome?
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.’
If you ask me ‘What is Down syndrome,’ it’s very hard for me to tell you exactly. If I say it’s three copies of chromosome 21, what does that mean? It’s impossible for something that is a label to define something that is undefinable.
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…. If you make sure you have high expectations, and that you’re patient and kind, that’s the best thing you can do.
What should parents have their child do when approaching someone with Down syndrome?
As long as it’s in the context of what you would do for anyone, it’s fine. If your child loves toddlers and babies and you allow to go up to them, but say don’t if the baby has Down syndrome, that’s a problem.
What should an adult say to the parent of a child with a disability?
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 it like a typical baby.
What should they absolutely NOT say or do?
I remember telling a friend and them saying ‘Oh my gosh, the suffering you’re going to go through.’ That’s probably not the best thing to say. ‘I’m sorry’ doesn’t cut it. A baby’s been born. 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.
The “Be Beautiful Be Yourself” fashion show will be held at the Mayflower Renaissance Hotel, 1127 Connecticut Ave. NW, Washington, on May 7. The cocktail reception will begin at 6 p.m., with dinner, the fashion show and a live musical performance at 7:15. For tickets, visit www.globaldownsyndrome.org.
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