Tuesday, November 14, 2017

When people talk about our children as if they weren't there


We're often at the mercy of our handyman at our house. I can fix stuff, but I don't have the time. This weekend, the baby gate at the top of the stairs broke off the hinges. Given Ben's tendency to climb, we needed it fixed, stat. I texted our guy, and he showed up ASAP the next day. He's basically the patron saint of our home, and one of these days he'll be getting a statue on our lawn.

I caught up with Sam for a bit as it's been a while since anything broke—or (very possible) we just haven't noticed, given how busy things are these days. Max's bus showed up and when he stepped off he was gleeful to see the white truck in the driveway. He loves watching Sam work on things when he is there after school.

After I took off Max's braces, he scrambled upstairs to see Sam in action. I wandered up a bit later as Sabrina hung with Ben in the kitchen.

As usual, Sam managed to fix something that had seemed hopelessly kaput.

"Look! It's all better!" Max announced, happily.

"Yes, that's great!" I said.

"You broke it!" Max reminded me.

"Yes, I did," I said. "Thanks a lot for busting me!"

Max cackled.

Sam asked me where Max went to school.

"You tell him, Max!" I said, and Max did.

"Fireman Max!" Max reminded me, and I said, "Thanks, Fireman Max!"

Sam has a child in his family with autism who'd gone to a local school. We talked about the population in Max's school.

"I don't know what he has," he said, meaning Fireman Max.

Now, Sam is the nicest guy and I know he didn't mean anything by talking about Max as if he weren't standing right there. Still, this sort of thing always takes me by surprise. It used to happen constantly when Max was little—people assumed he couldn't understand them because Max's speech wasn't so clear. These days, Max's words are a lot more intelligible but there are times when people still think he can't engage. So I'll rope Max into the conversation.

"It's not autism," I said. And then I left it up to Max to discuss: "Fireman Max, would you like to tell him what you have?"

"Cerebral palsy," Max answered.

"Cerebral palsy," I translated.

"Oh!" said Sam. He noted that he knew kids with CP could be affected in various ways.

"Yep," I said. "Max, you're a smart guy, right?"

"Smart guy" is Max's favorite description of himself. A beloved former teacher used to call him that, and it stuck.

"Yes!" said Max, smiling.

"You're definitely a smart guy," Sam said.

Soon, he packed up his tools and left. Max will definitely be excited when I break something again.

Every single time I have conversations like this, I hope people get the message. Every single time I write about this, I hope that the next time a reader bumps into a child or teen with disabilities, they'll address the child or teen with disabilities, not their parents or companion.

Our children should be part of the conversation, even if we have to make it happen. Hopefully, we can help change that.

6 comments:

  1. I think a lot of it has to do with what the person is used to. You mentioned that Sam has a family member with autism. If that child is non-verbal he may simply be used to the idea that direct communication with a child with disabilities isn't always possible. Personally, I'd react to that situation in different ways depending on what I thought the person's reasoning was. If they genuinely thought that my child was incapable of interacting with them, then they just need to be educated, but I probably wouldn't take offense. If, however, they acted as thought my child was invisible or unworthy of being considered...well...let's just say that my reaction would be quite different to that. - Alyssa

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    1. Thanks for these thoughts. I wasn't offended, just surprised, as I always am when this happens. I know he didn't think Max was unworthy, he's always great with him.

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  2. This is such a great reminder. Even with a child with disabilities, I find I still talk to the moms at preschool about their kids instead of engaging the kids and asking them how old they are, and small questions that I typically find myself asking the moms.


    Paige
    http://thehappyflammily.com

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  3. You are so right to bring this up often. I was fairly privileged growing up with disabilities ... meaning I didn't have to face a lot of really severe discrimination or lack of resources. Until I was in college, in fact, the ONLY kind of disability discrimination I would have admitted to experiencing at the time would have been this, being talked about in the third person, as an object rather than a subject, when I was right there. And for what it's worth, I would suggest it's just as critical an issue when a person is nonverbal ... maybe even MORE important.

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    1. Yes, definitely. This probably happens so much more often to people who are nonverbal, and the wrong assumptions that much greater.

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Thanks for sharing!



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