#jukie

On Sunday afternoon, my dad, Jukie and I went to Rite-Aid to pick up my asthma medication. While my dad gave the pharmacist my prescription, Jukie and I went and sat together in the waiting area. There was an older woman sitting a few chairs away from us. I was showing Jukie the items I intended to purchase for an art project and Jukie was making his usual happy sounds.

My dad got my medication and bought me the items and the three of us left the Rite-Aid without incident.

Once we were outside, I went to go put our purchases in the trunk of the car. As I walked back to my family, the woman from earlier grabbed my arm. The following exchange occurred:

Her: *still gripping my arm* I really admire you.

Me: Oh…

Her: I saw you in there, and I—my grandson has autism. My granddaughter, she’s amazing with him. She’s so good.

Me: Yeah, thanks…

Her: *still gripping my arm* Now I don’t know what’s going on with– *gestures vaguely towards Jukie* –him, but… I really admire you. I really do.

Me: *pulls away* Thank you. Have a nice night.

Now, while this whole exchange was happening, my brother was within earshot. The woman assumed that, since she couldn’t understand him, he couldn’t understand her. In this case, that assumption was wrong—Jukie understands way more than even his his family gives his credit for—but even if it had been correct, it’s not okay to talk about disabled people as though they are some sort of burden to their caregivers. It’s especially not okay to use this language in front of the disabled people in question just because you think they can’t understand/hear you.

Yes, there are times when raising Jukie is difficult. But I’ve never been comfortable with the idea that my parents and I are some sort of superhero family just for taking care of him. Because what else are we supposed to do. Not take care of him? Not pay attention to his needs? Not speak to him with basic kindness?

Not treat him like a person?

Here’s why the rhetoric used by the woman outside the store bothers me so much: it implies that, by sitting next to Jukie and talking to him, I was going “above and beyond” what anyone would have expected from me. And that’s wrong. That’s so wrong, because it implies that Jukie doesn’t deserve that. That, if some other big sister were to ignore him or show him unkindness, that would be okay. Not good, but okay.

That’s kinda f**ked up, you guys.