Tuesday, January 9, 2018

When people are surprised by the ability, it hurts

"Oh, wow, he can read!" the woman commented.

We were in Jamaica at our hotel's coffee bar. Max had been scrolling the web on my iPhone for homes in Jamaica, given that he wanted to move there, and was pointing to his fantasy house. The lady in line behind us had, evidently, been observing us.

"Yes, he reads really well—right, Max?" I said.

"Yes!" Max answered.

I said this to her straight up, but my heart had taken a nose dive. It hurts when people are surprised by Max's abilities. Max doesn't seem to notice or mind, but to me it's a reminder of the perception obstacles he has to overcome in life. It's equally disheartening when people talk about Max as if he weren't there, yet another hurdle to contend with.

It's been my experience that people do not presume ability when they meet children or teens with disabilities—they presume only disability, in every which way. And so, they are often surprised when they notice what our children are capable of, even when they're doing basic stuff:

[At the pizza store, when Max pointed to a slice with ziti, from the guy behind the counter]: "I love how he knows what he wants!"

[At the park, when Max was holding onto Ben's hand, from a random nanny]: "Awww, he can still be a great big brother!"

[In the supermarket, when Max was wheeling a cart down the aisle, from an older lady]: "It's great that he knows his way around!"

To be sure, it's wonderful that Max does these things. I know just how far he's come from those dire doctor predictions in the NICU, and just how much effort has gone into certain accomplishments. I cheer him on when he so much as manipulates a door handle. But I'm his mom. These strangers who make remarks don't know anything about Max, just what they're seeing: a boy with disabilities going on about his life...and to them, that is remarkable.

Am I over-feeling this? Perhaps. It comes from a place of wanting people to take it for granted that kids and teens like Max have competency, strengths, talents, smarts—the entire human-being package. Of course, the comments are typically well-meaning. But they have the opposite effect of elevating Max: They make it clear how low some people set the bar for those with disabilities. And they're other-izing in that they treat people with disabilities as if they are an entirely different species.

Would you ever look at a stranger at Starbucks and say, "It is so impressive that you knew you wanted a grande!" Or, even weirder, would you turn to his partner and say, "It's really impressive that he knew he wanted a grande!"

Exactly. So what makes it OK for someone to comment on a person with disability ordering something, doing a chore, performing a task, or basically existing? And to talk about him instead of to him?

There's a double-edged sword of what I wish for: If I hope for Max to not understand the "Wow, you're actually capable of that!" underlying sentiment of these comments, and he doesn't, that means he wouldn't have achieved that level of cognition. If I wish for him to understand them, and he starts to, then perhaps they will pain him, too—although he could defend himself.

What I unequivocally wish for is for Max to go on about his life without narration from strangers. That's not happening anytime soon. So the best I can do for him, the best we can all do for our children, is to is to make our children part of the conversation when others talk around them. And we can help others see, in social media and our real-life circles, that disability is one part of who a person is, not the whole. And we can keep right on lifting our children up and cheering them on, so they're proud of themselves and have the confidence to contend with a world in which people don't always see them for who they are.


  1. I get what you are saying. I know my son does hear everything and understands it. He just doesn't show it. Later when he is in a safe environment his behavior will show it. Just some random thoughts.

    Pizza store comment about knowing what he wants: lots of typicals have no idea what they want and hem and haw at the counter. And I'm sure Max is enthusiastic too. This has to make the guy at the pizza place happy - a customer who knows what they want and enjoys it.

    Older lady at the supermarket - in her generation people with disabilities weren't shown how to do the shopping. Even today kids aren't. When my son was in middle school they were more interested in teaching them how to work at the store instead of use it. My argument was that you need to know how to use your community before you can work in it, clean it, etc. This is a reminder to me that I need to get working with Luke again on making a shopping list and doing the shopping.

    Remember that it is remarkable what Max can do and will do in the future. Every time people see him out and about he is showing them the possible.

    It would be even more remarkable if folks would think before the speak.

  2. I'm in the third year of my Developmental Psychology undergrad (with hopes to become an elementary school teacher) and people are still shocked when I tell them as if that's off limits to someone with my disabilities. It's frustrating.

    1. As a disabled person (hearing loss) pursuing a degree in elementary education with plans for a master's in special education, I totally understand and feel the same way.

  3. I've been feeling this more and more too lately. Especially at my daughter's preschool. She's the only one in the class who cannot walk, and yet the other parents are constantly amazed that she's picking up on things at the same rate or a little faster than the other kids. Apparently being physically disabled should be a sentence for the rest of her too. Also someone told me she's too cute to be in a wheelchair... Excuse me? Like, there aren't even words to fully express all the ridiculous things that they managed to say in a seven word sentence.


  4. This is beautiful. I think it could be a great Op Ed!


Thanks for sharing!

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