Disabled, #saytheword, and special needs

A friend sent me a message today – “Have you seen this? What are your thoughts?” with an accompanying link to a blog post entitled “”#saytheword, not “special needs.

As I refer to Maura as having some special needs, my curiosity was peaked.

Please note – the author of the blog post asked me to remove her words, and I’m respecting her request – to summarize, the blog writer talked about how when people say “special needs”, it gives the idea that those with disabilities are asking for more than their share when they ask for accommodations, support, etc, so they can have as equal of an experience or access as a non-disabled person. She also writes how the phrase “special needs” goes against the social model of disability. As in, a deaf person is not disabled because they can’t hear, but because the world was set up for hearing people who have made things inaccessible for non-hearing people.

 

Hmm. Well, I’ll admit, I’ve never looked at it that way. I just found it a really easy way to quickly convey Maura’s differences in a way that the common people could grasp.

Again, original blog post words were removed, and I am summarizing – Apparently, some people find the word “disabled” stigmatizing. Not using the word makes that worse. The word disabled isn’t a dirty slur word, stop treating it as such. 

I have to admit again, I didn’t realize using the word “disabled” was seen as a bad thing. I also refer to Maura as “cognitively disabled” or “cognitively impaired”. It’s really her only real label. It’s on all her special ed paperwork and helped us get her qualified as “disabled” in the eyes of the state (not that we get any benefits, just that recognition, but that’s another blog post for another day.)

So now, there’s a call out to stop using the phrase special needs. We’re to proudly say Disabled.

And maybe I haven’t had enough coffee, or have watched too much “Scooby Doo”…but part of me is a bit…huh?

First, yes, language matters. I will totally go to bat on that one. However, if someone asks me if my child has special needs, I’m not going to lambaste them for improper language. I’ll say “Sure, she has cognitive impairments and low muscle tone and apraxia and how long do you have because I have this great soapbox I can climb up on while boring you with the details of what all makes my daughter different. You’ll love my impassioned speeches on health insurance and special education! Wait! Come back!”

Or, you know, I just say “Yep.” and then move on. Because usually, they don’t want to know everything, and if they do, they will ask more questions, and I will answer more questions. Or we go forth and talk about something else. Because life doesn’t really quite revolve around my daughter’s disabilities. It also revolves around the Xbox and how much food is left in the fridge.

Maybe it’s because I don’t feel shame in the word “disabled”. I feel like I spent years trying to get people to admit that yes, my daughter has legitimate disabilities and because of those, special educational needs. I worked hard to get everyone on the same page. Honestly, looking back, I can’t believe I had to fight for it. If anyone yells at us for using the disabled toilet, I will pronounce that my daughter is, in fact, disabled, and we have legit reasons for using it. That hasn’t happened yet though, because if anyone gives me a look, they get a wicked side eye from me. I only have so much time in my day.

All that said, I still refer to Maura as having “some special needs”.

Why?

Well, I don’t know…I just have. We’ve never had a handy label, and she’s physically able. People are quick to get our situation when I say she has special needs. There’s a lot going on in my life, and I can only explain Maura’s differences so many times before I go the quick and easy route. Otherwise, my coffee would get cold, or I’ll miss dinner.

And because I’m so busy doing other things, and because we’re also in a little bubble of our own in the world of the undiagnosed, I never knew this was a problem. Or the word “disabled” needed to be taken back.

The one thing I do know is, if we get caught up in reclaiming words and using the right wording at all times, we may actually put off those who otherwise are trying to learn and understand. If you show genuine interest in my daughter and her disabilities, and are actively trying to learn more about them – or just decide that she’s awesome and nothing else matters – I’m not going to jump down your throat if you don’t use the right terminology. Hell, people have flat out asked me “So what IS wrong with her?”, people who became great friends, and who always included Maura in things.

See, we all say really dumb things sometimes. No one says the right thing always. You can be the most PC person and still be a jerk towards my kid. Or, you can be a good person who doesn’t know that there’s a war over words going on, you just want to know more because you’re a decent person.

So yeah, that’s my non-answer to this newest thing to cross my path. Will I change? Probably not. Is that awful of me? I’m sure I’ll be judged by some for it. Do I have time for that? No. I’m too busy with other things in my life, like finding ways to meet my daughter’s exceptional, unusual, singular, uncommon, unique, special needs. And buying more food for the house full of ravenous, famished, carnivorous teens. And meeting my own, mundane, run of the mill, ordinary needs.

 

 

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