“What’s wrong with him?”
That’s what kids always say when they see my sister for the first time. I’ve heard it over and over and over again. And yes, they always think my sister is a boy for some reason.
When they say this phrase, there’s always this rage that builds inside me. I’m mad that they can’t just accept her at face value, I’m mad that they have to ask questions about her, and I’m mad that they think she’s a boy. Can’t you see her long braid and the pink sparkles she’s wearing?
As a result, I get defensive and I say in a terse voice something along the lines of, “There’s nothing wrong with her. But she did have a brain injury and uses a wheelchair now.” Given my tone of voice, they usually don’t ask much further and we go our separate ways.
But what if I wanted to actually handle these conversations with finesse? And what if I could empower my sister in the process?
In order to empower my sister, I have to let her speak for herself. Other people may not understand her well, but that doesn’t mean we should just talk about her when she’s right there and perfectly capable of answering.
On the other hand, she may decide she doesn’t want to participate in these conversations, which is perfectly fine and understandable. If someone pointed at me and said “What’s wrong with him?” my immediate response would be to duck my head and get away from there as fast as possible. But my sis is much less easily embarrassed than I am. I mean, she’s had to deal with people saying things like this all her life.
So what would I want that conversation to look like today?
Curious Kid: “What’s wrong with him?”
Me: “Hi, I’m Caitlin. [To Morgan] Do you want to introduce yourself?”
Morgan: “Hi, my name is Morgan.”
Me: “What’s your name?"
Curious Kid: “My name is Curiosity.”
Me: “Hi, nice to meet you Curiosity. Morgan, would you like to tell Curiosity about yourself?”
Here’s where the story becomes pick your own adventure. At least it’s Morgan’s pick your own adventure. She can say yes, in which case I’d repeat what she says so the kid can understand her.
Or she can say no, in which case I’d ask, “Do you want me to tell them about you?” Again, another pick your own adventure for Morgan, who can give me permission to tell them about her, or she can say no and I can just tell the kid, “Sorry, she’s not interested in talking about herself right now. Nice to meet you,” and we carry on with our own business.
You don’t have to go be super mom advocate all the time. The fact is both you and your child always have the choice to participate in these conversations or not. We’re not always going to be strong disability advocates and allies every day. Some days we don’t have the time, or the emotional bandwidth, and that’s okay.
But for the times you want to be a better advocate and ally, for the times you want to teach people who don’t know any better, and for the times you want to get one more human being on our side (the side of understanding, accepting, and celebrating people with disabilities), I want you to empower your child. I want you to let your child speak for themselves and have a say in conversations about them. They shouldn’t just stand to the side and be talked ABOUT. They should be part of the conversation!
If we want kids with disabilities to grow up to be great self-advocates, we have to start by simply making them a part of the conversation, whatever that looks like for them.
I want to hear from you. Do you ever speak for your child at times when they can speak for themselves? What is one instance where you could empower them and give them more of a voice?