So, what DO you say?

So to follow up on yesterday’s post about wording and what we call whatever Maura has, I thought I’d make a cheat sheet for those of you not in the club for when you’re not sure what to say.

Tip #1 – when meeting a child with disabilities, treat them like any other child.

Because they are, first and foremost, a child. Someone’s very loved child. A precious, precocious child. Ask them what their name is. Say hi. Smile. It’s pretty easy. If they thrust something your way, like a train or a unicorn, say “Wow, that’s cool.” If they start in on a fifteen minute monologue on dinosaurs, say “Wow, that’s cool, you know a lot about that.” If they say “Check this out” and proceed to do a wheelie in their wheelchair, you say “Wow, that’s cool!”

It’s pretty easy once you get the hang of it.

Tip #2 – always presume competency.

Don’t look at a person in a wheelchair and assume anything other than they’re a person who uses a wheelchair. Being in a wheelchair doesn’t instantly cause an IQ to fall 50 points. You can be quite able-minded while being physically disabled. Hello? Stephen Hawking? Smarter than almost everyone.

I would much rather someone assume competency in my daughter than treat her like a puppy. No human being should be treated like a puppy…unless they’re two, and barking, and pretending to be a puppy. Then that’s okay. But don’t speak in front of a person with any sort of disability as if they can’t understand you. Because ten to one, you’ll be wrong, and you will be insulting.

Tip #3 – if you’re not sure you should say it, don’t.

Seriously. If you think it might be rude, find a new way to phrase it. Especially if you’re about to say it to a stranger. If you’re a close dear friend of fifteen years, and have been through all sorts of life things together, then you can start with “Okay, this is totally rude and I don’t know how to phrase it better but…”  – when I hear that, I know that the friend is truly trying to understand things, I’m okay with it.

That said, one thing that should NEVER be asked by people….”So, what’s the life expectancy?” Seriously, don’t. By the way, my answer to that would be “Longer than yours right now.”

Tip #4 – when in doubt, ask.

That goes for anything. My kid’s having a seizure? Ask how you can help. It might just be “Here, hold my purse.” but at least I know I’m not alone in this. If my kid’s having a meltdown and I’m trying to get the hell out of the store as quickly as possible, offer to push my cart for me so I can focus on steering my offspring safely. Not sure why that child is spinning in circles repeatedly? Say “Gee, she seems to sure like that” and you can learn about vestibular motion or stimming or sensory seeking.

It’s all about learning, for all of us. Like I’ve said before, if you ask me because you genuinely want to learn more, I will find answers. Or admit that there are some things even we don’t know.

Tip #5 – realize that our lives don’t actually revolve around the disability

We can talk about so many other things. Like politics, books, hobbies, Donald Trump’s hair, why Kanye West needs some social stories…a person with a disability is a person first. Maura doesn’t talk about her disability, she talks about shoes and My Little Pony and Scooby Doo. I can talk about art and music and how I’m scary good at “Cards Against Humanity” (oh, the shame of it!) and how teenagers are going to be the death of me and the latest book I’ve read.

See, we’re three dimensional people, those with the disability, and those who care for them. There is so much more going on in our lives. To us, the disability becomes “the norm” and we’ve learned to work around it to the point that it’s sometimes unnoticeable. So you pointing it out all the time? Is a bit weird. It’s just our life. Each life comes with challenges, some are just more visible.