I have been treating a little boy in my clinic for well over a year now, in fact, I saw him just today. I’m not going to tell you his name, age or diagnosis, not just for legal reasons, but also, because for the purpose of the story, it doesn’t matter. But I will tell you that I adore him. If I was allowed to have favorite patients, he would be high on my list and he has captured my heart in a special way.
A few months ago, I ordered a special piece of medical equipment for him. It took months to get it created and adjusted properly. We had to go through his pediatrician, the company that makes it, repeated appointments to fix things that weren’t right and on and on. And finally, about a month ago, he got it. This is not his first piece of equipment, but it was the first that he might actually use and it is important for his wellbeing and function.
We worked hard to get him comfortable using it and made a BIG fuss over how cool it was and things were going really, really well. Last week, he and his mom went to Target to do some shopping. As they were walking through the store, a young boy sitting in the shopping cart noticed the piece of equipment and like any kid, was curious about it. And so he asked his mother why my patient had that.
And her reply was “well honey, he’s different.”
That one word, that one 3 syllable, 9 letter word, undid months of work. It crushed a little boy’s self esteem and it set him back weeks in terms of his function.
The question in and of itself is completely appropriate. That boy in the cart had every right and reason to ask his mother, and there are a million great ways to answer that question (“why don’t you ask him?” “It helps him do x, y, or z” “It makes him jump really high!” etc, etc, etc). But instead, she chose not to explain it at all, but instead to label.
Her response was possibly the worst thing that she could’ve chosen to reply with. It instantaneously created an otherness, one that we had all been desperately trying to avoid, and set it right in my patient’s lap. It was an otherness he had not yet come to fully recognize, but is now hyperaware of. That one stupid word literally changed his life.
The problem with labeling someone as different, especially with the tone that is so often used, is that it separates people into typical and atypical. It makes the group that are somehow atypical feel like they don’t belong or can’t fit in. And in the case of my patient, all he wants in the world is to belong. To have a group of friends, to play in a typical fashion, to be anything but different.
And he isn’t different. He’s a little boy. He loves Disney movies and pirates and cars and everything that kids his age love. He skips the number 17 when he counts. He is obsessed with superheroes and will do just about anything if you can make it into a game about Spiderman. He is not “different.” He may move in a way that the rest of us don’t or require help with things that other kids can do alone, but he isn’t different. He’s bright and fun and loving and everything that you want a child to be. His sameness is so much greater than his difference, but for some reason, no one can seem to get past the things that don’t fit.
I wish I could’ve met the mother in Target that day. Not because I want to scream or yell (though I do, a little), but because it could’ve been an incredible opportunity to open someone’s eyes to how powerful their words are. I wish I could’ve shown her how important a question that was and how important her answer was. I wish I could’ve educated her on all the ways my patient is not different, or on all the ways that using different in that tone is a terrible thing to do. I wish I could’ve helped her to understand how different can be good, how different can sometimes even be better.
We must do a better job of explaining and introducing disabilities and differently abled people to our children. By making these differences a negative we do a great disservice to these children and adults who have incredible talents, amazing personalities and bright futures that we completely miss because of our preconceived expectations about them. We need to teach our children to look beyond the things that give them pause, to push through their unintentional prejudices and realize that underneath what we may see as differences are often layers of sameness.