What Are YOU Looking At?
By Jo Chopra
If you have a child with a disability, the chances are high that one day soon (it’s probably already happened) you will be in a public space and you will notice someone staring.
You’ll see a mother jerk her child’s arm sharply in whatever direction is away from your child. Because maybe your kid is contagious. Maybe she’s dangerous.
You will hear another child ask her father: “Daddy, what’s wrong with him?”
Or you’ll watch as a mother tries desperately to distract her daughter from gawking at yours: “Come on, honey! Let’s go on the swing!”
You will see pity, horror, revulsion. Occasionally, you will see sympathy and respect, but don’t kid yourself—this won’t happen very often.
Where children are concerned, it’s never easy. Children have a way of cutting straight to the heart of every difficult situation. They ask hard questions. They demand answers. They simply will not let us off the hook.
“He looks funny.”
“Why can’t she talk?”
“How come she keeps drooling?”
“What’s that thing coming out of his stomach?”
Here in India, according to the World Health Organization, 15 percent of our children have special needs. In absolute terms, that’s a huge number—66 million, in fact. Whoa, baby. There are whole countries that don’t have that many people.
But on the flip side, 85 percent of our children are normal. Whoa, baby, times five. Plus! That number, 374 million, is truly enormous. And chances are, your child is one of them, one of the so-called lucky ones. A typical child, a child without special needs. A child whose needs (because every child has needs) are recognisable and manageable.
So what can you do to make it easier for the kid whose needs are special? How can you make that child feel included, accepted, more like your kid? More important, how can you help your child be the one who is accepting of differences and inclusive in her approach to life?
My daughter, Moy Moy, has cognitive and physical impairments and over the years – 25 now – we’ve endured our share of insensitive staring and rude remarks. We’ve felt isolated and targeted and we’ve felt alone and rejected. A few times, we’ve felt supported and included. (I’ll never forget the mom who explained to her daughter that Moy Moy was “working on her words” when the little girl asked why Moy couldn’t talk, or the British Airways attendant who upgraded us to Business Class because he thought Moy would “be more comfortable.”)
But mostly what we’ve experienced is confusion and ignorance. It hasn’t been hostile and it hasn’t been mean. It’s simply been people who didn’t know what they were seeing, didn’t know what to do about it, and didn’t know how to react. And that’s because they were never taught. Their parents didn’t know about disability, and so, they weren’t able to teach their children.
We can change that.
These aren’t all-purpose tips; they won’t work in every encounter. But they are born of experience and hard-won knowledge and they might just prove useful.
Remember a person is more than his/her disability. Moy Moy and I are used to her disability; it’s just one part of who she is. You may wonder why she is drooling or what it’s like not to be able to walk, but she doesn’t. She’s wondering what’s for dinner or why her Mom is talking on the phone during our evening walk. It would be great if you can keep in mind, when you run into her at the corner, that she’s just another young woman out for a walk. Smile, say “Hi,” walk on. It’s that simple.
Address people directly. Moy Moy is a person with opinions and stories and experiences. If it’s appropriate, speak directly to her. Don’t ask me how she is. Ask her. Even if she can’t answer you in words, she’ll love to be acknowledged.
Respect personal space. Moy Moy doesn’t like to be touched by strangers. In fact, very few people enjoy that. Please don’t assume that because she has a disability you can touch her without her permission. Think about how that would feel to you.
Don’t act like he/she is a specimen for investigation. Moy Moy is entitled to the same courtesies anyone else deserves. I don’t mean to be preachy, but it’s amazing how many times people say inappropriate things to us. Please don’t ask me how long Moy Moy has been like this, if she gets her periods or whether she wears nappies. It’s really none of your business.
Don’t assume she is a representative of the Disabled World. All disabled people are not the same. Everyone with autism is not brilliant. Everyone with Down syndrome is not charming and loveable. They don’t all love music; they aren’t all innocent, pure and holy. There is no such thing as a typical person with disability. Please! Moy Moy is just Moy Moy.
When you address people with disability with respect and interest, your children will pay attention. They will get the message that a person with a disability is a person just like any one else: a person with a story and a family and a life. They will learn to be easy and natural with everyone: old, young, rich, poor, able, disabled.
But better yet, make sure your children actually know other kids with special needs. Make sure they go to an inclusive school. If your kid’s school doesn’t accept kids like Moy Moy, demand to know why. Make sure your child has a friend or two with autism, with cerebral palsy, with Down syndrome. Enlarge his world. Introduce her to differences right from the start.
It will serve them well. Believe me. If I know anything at all, it is this: We are all unique. We are all special. We all have special needs. The sooner we learn it, the better.