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Tag Archives: language

The terms we use

13 Nov

I read a post by a disability blogger I follow, about the use of infantilizing words and phrases we use in lieu of “disabled” – like “Differently Abled” and it’s shorter term “Diffabled”.

I’ve always hated differently abled. Diffabled just is ridiculous.

I got what this blogger was saying, because I’ve seen grown adults do gymnastics to avoid the word “disabled”. Like the one I heard, where the person used the term “special abilities” – I interrupted slightly and pointed out that the phrase they used made them sound more like Superman. My daughter isn’t a member of the X-Men, she is disabled.

The part of the post written by the disability advocate that made me pause was that they considered “special needs” basically as bad as “differently abled”.

There is a part of me that gets it. It is a bit cotton candy of a descriptor, and it’s something that people usurp unnecessarily. “We ALL have Special Needs.” they’ll quip in a show of false solidarity. No Gladys, your preference to mayo over mustard on your sandwich is not the same as my daughter’s apraxia. Thanks for playing.

But there’s a part of me who has had the experience where we’ve had to use it to describe our daughter, and would still use it even though I kind of knew better. 

Why?

Well, part of it is because of society. When you think of the word “disabled” or conjure up a picture of a disabled person, what picture pops up in your mind’s eye? I bet there’s a wheelchair involved, or a person with Down’s Syndrome. Those are the disabilities we’ve come to know as society.

If I walked out of the disabled toilet with my disabled daughter in tow, we will sometimes get a stink eye from those waiting. Because my daughter doesn’t look disabled, therefore, we have no right to use it. Even though she IS disabled.

Society reminds me that my daughter doesn’t fit the visual of “disabled”. 

Add to that, the fact that my daughter doesn’t have a diagnosis. We can’t say “She has autism.” or “She has Fragile X Syndrome.” So we have no label that society can embrace warmly and say “Oh, I’ve heard of that because some celebrity’s kid has that.”

Frankly, we weren’t even allowed to use “disabled” with her for the longest time, partially because we didn’t have that qualifying diagnosis that made her legitimately disabled in society’s eyes. Oh sure, the girl wore ankle braces and was in OT/PT/ST and had a laundry list of issues – but the school kept checking off the box of “developmentally delayed” until it was ridiculous. As the special education director didn’t like spending SpEd money on SpEd students, I’m pretty sure ticking off the “delayed” box meant that they could spend less on her.

But even before that, I had people tell me that I was overblowing Maura’s issues. That she’d be fine. That it wasn’t like she had a real disability like other kids they knew. Doctors at first said she’d probably outgrow her delays. They were, after all, just delays. They weren’t real disabilities. If they were, surely she would be worse off, have a label, have a diagnosis.

You can see how we hesitated to use the term “disabled” with our daughter. Not because we saw it as a dirty word – but because in many ways, we weren’t allowed to use it. 

It wasn’t until we moved to Ireland that we started feeling like it was okay to use the phrase “disabled” with Maura. Mainly because in Ireland, they looked at her and said “Yep, she’s disabled, here’s a school for disabled kids, here’s some disability benefits, what do you mean people in the States didn’t think she was disabled? And what’s wrong with being disabled anyway? Nothing. Nothing’s wrong with that.”

Just like that, we were legit – though I still got a bit of a stink eye coming out of the disabled toilet with her at the shopping centre at Christmastime with the long lines. I swear, we weren’t cheating! She is disabled!

Because at the end of the day, Maura still doesn’t look disabled. We still don’t have a diagnosis. All we have is “intellectual disability”, which is a mouthful and honestly, I don’t think really describes her well. It’s too generic, and doesn’t take into account her savvy ways and cleverness.

Just today though, I came across a blog written by a mom of a child with physical disabilities. And the tag line for it stated how she was writing for disability and special needs awareness. I wondered – if they’re both supposed to be the same, why the “and”? They aren’t two different things.

And just like that, I understood better the disability advocate’s point of view. That by using “special needs”, we’re downplaying actual disabilities. 

Something I should know already because it happened to us.

Or maybe, because it happened to us, I was too close to things, and needed that fresh perspective.

I’ve been working to phase out my use of “special needs” – but I need society to catch up with me, to follow my lead.

So please – I’m asking you – call my daughter disabled. Consider her disabled. Her disabilities are legitimate. Her disability is real even if it doesn’t have a name, or if we don’t know the cause of it. In a way, we’ve worked really hard to earn that label of disabled. It isn’t an insult…unless you think being disabled is a sad burden of a life. Then you need to rethink a lot of things, because my daughter’s life is a fabulous one.

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Maura – 2011 – Killiney Beach, Ireland [image description: little brown haired girl in a light pink top and darker pink skirt, wading slightly into the Irish Sea, hands up in surprise as a wave hits her ankles]

 

 

 

 

 

 

 

 

 

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“Is this the hill you want to die on?”

9 Aug

Earlier in this year, I got into an argument with a friend of a friend on Facebook. As you do.

Mind you, I try not to do such things. I’ve even gone as far as to take the subject at hand, and post about it on my own page so not to start a fight on a friend’s page.

But this day, I didn’t.

Why?

The friend of my friend started making up a new “tard” word. As in “this person’s so retarded that we have to come up with a new “tard” word to show just how stupid they are.” (please note – all conversation is paraphrased from memory)

I was all “Yeah, “tard” words aren’t cool, stop it.”

Friend of friend. “I can say anything I want.”

Me – “Well, as someone who has a daughter who is, to use the more outdated medical terminology, mentally retarded, I am telling you that “tard” words aren’t cool.”

Friend of friend – “OMG, I can’t believe you used the phrase “mentally retarded”, I am a teacher and we don’t use such language. I have never used the phrase “mentally retarded” in all my years of teaching!”

Me – “Da fuq?”

Yes, dudebro called me out for using “mentally retarded” after defending his use of his made up “tard” word, trying to paint me as the insensitive one. So I said something snippy and brilliant and kinda mean that I don’t recall because it’s been months. But I’ll own that I was being snippy and rude at that point.

Our friend steps in…my friend who has proclaimed their love of my daughter, who has always been super supportive, who has always shared what I written…and my friend told us to cut it out, and me basically to shut up.

My friend told me to shut up.

I may have seen a wall of white hot fire. I don’t take well to being told to shut up like that.

I was all “You have got to be kidding me.”

My friend was all “It’s my wall, people can say what they want, I won’t censor them.”

I was all “Seriously, are you kidding me?”

My friend said “Is this the hill you want our friendship to die on?”

Hmmm…let’s contemplate that hill. That hill that’s built on a slur for people with my daughter’s disability? The slur that I have been vocal about not using? That’s sort of been my platform? That I’ve written blog posts about and you have shared? Is this the hill I want to die on? Want to sacrifice our friendship on?

My first thought was “Do you not know me?”

My second thought was “No. Honestly, I will not unfriend you over this. You are my friend.” And I said this.

One or both of us may be having a bad day. I was definitely now viewing the post through a red haze of anger. The friend of a friend was at that point, offering to not use “tard” words on our friend’s page.

But as it turns out, the damage was done.

I steered clear of commenting on my friend’s social media, partially because I was angry and obviously posting in anger wasn’t working out. Then it looked like my friend took a break from social media. Summer came along and I got busy with things.

But last week, my friend posted something on Instagram. And I commented with a long-standing running joke between us.

Today, I realized that my friend has blocked me on Instagram. We are also no longer friends on Facebook.

So here I am, alone on this hill that one of us was apparently willing to let our friendship die on. I stood my ground. They walked away.

If I could go back to that day with that post, would I choose to stay silent?

No.

Who would I be, as a mother, to allow people to use slurs based on my daughter’s disability? How is using a disability slur any different than using a racial slur or slurs against LGBTQ+? In my world there is no difference.

So yes, I guess in the long run, it’s a hill I’d die on.

 

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Photo – me with my kids. on a hill. in Ireland. 2011

 

 

 

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