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Tag Archives: awareness

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.

IMG_3039

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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Please don’t say “I’m sorry”

31 Jul

It happens often enough that I brace for it. I say “My daughter has special needs” or “My daughter has moderate cognitive disabilities” and the person I’m explaining it too suddenly channels David Tennant playing Doctor Who –

Im-so-so-sorry

Seriously, this happens a lot.

And I often wonder – why are they sorry? And then I remember – because the world thinks being disabled is, like, the worst.

So I try to assure them that we’re cool with it, but they keep saying sorry.

Listen, I get it. You think you’re being empathetic. To an able-bodied person, becoming disabled sounds awful. To a parent, having something “wrong” with your child seems to be the worst thing that could happen. You think you’re being kind, being thoughtful, being sympathetic to what you perceive as our burden, our cross to bear, our struggle.

So I’m here to tell you – just stop it.

No, really, stop.

It’s an awful way to respond.

You say sorry as if it’s awful to have a child like mine even when you haven’t met said child. Because if you had met my daughter, you would know that her life is awesome and fabulous, just like my daughter. It’s not a life to be pitied or to cry over. It’s an awesome life lived fully. She loves and is loved.

When you repeatedly tell me how sorry you are that my daughter has disabilities, you may not realize that you are implying that maybe you think she shouldn’t exist. Because in a Perfect World, there’d be no disabilities. In a Perfect World, every child would be born able. You may not mean to say you’re sorry my daughter exists with all her disabilities, but you unintentionally imply it.

And that’s just not cool.

So, what can you say instead of “I’m so sorry” when I tell you my daughter has disabilities?

“Oh, tell me more.”

“Oh, okay, want more coffee?”

“I’m totally not good with these things and don’t know how to react but I’m sure your daughter is every bit as fabulous as you.”

The best answer I’ve ever gotten came from one of the movers when our stuff arrived in Ireland. Maura was so excited to see our stuff had arrived, that she ran up to the head mover and babbled excitedly at him. His eyebrows raised slightly, because she didn’t use anything close to English in her babbling. I decided to give the disclaimed – “She has some special needs.”

The man shrugged. “Ah well, there’s nothing wrong with that.”

And he was absolutely right.

There is nothing wrong with having a disability, or having a child with a disability.

So please, stop telling me how sorry you are.  It’s all good here.

 

 

 

Did you know…

17 May

…that this week is the first ever International Cri-du-Chat Syndrome Awareness Week?

Well, I didn’t either until another blogging mama reached out to me and asked if I wouldn’t mind spreading the word about it.

Funny enough, I am aware of Cri-du-Chat Syndrome.  I first read about it during my stints reading the rare diseases database, while searching for a diagnosis for Maura.  It stuck with me because of the descriptor, how babies with this syndrome sound like little mewing cats.  Let me tell you, in the world of genetic syndromes, that one stood out to me.

So when asked to spread the word about this syndrome, to bring some more awareness to it, I said “Yes please!”

To read more about it, you can either click on the links already provided, or one of these below –

Five P Minus Society

Criduchat.org

Many thanks for taking the time to learn about this syndrome!

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