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Tag Archives: special needs

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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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.

 

 

 

A backpack of one’s own

9 Jun

“That’s mine!” I stated with some resignation mixed with frustration. Because once again, Maura nabbed something I bought for myself and claimed it as hers.

This is an ongoing problem. Maura doesn’t differentiate between the stuff that is hers, and the stuff she wants to be hers – to her, it should all be hers. I buy myself new shoes? She’s trying them on. I get a maxi skirt at Target? She’s wearing it before I’m done unloading the car. I spend three months searching for a good backpack for myself to haul my writing gear in because she took the last backpack I bought? She’s got it stuffed with tutus and on her back without me even realizing she’s taken it from the place I thought I had hidden away.

It’s not just my stuff. She gleans from everyone. Collin was missing his wallet. We started searching. I found Miriam’s wallet in one of Maura’s backpacks before finding Collin’s in another of Maura’s backpacks. Sean was missing keys on a lanyard. Maura had them. Josh didn’t even know when Maura nabbed $120 in cash from his bag. No, that one, I got an email from Maura’s teacher with “So Maura brought in a Dooney & Burke purse with $120 in it. I’ve locked it in a cabinet until you can come retrieve it.”

The purse came from the thrift shop. I’ve yet to use it because every time I turn around, it’s in Maura’s room.

It’s frustrating, and something that we’re still trying to teach her, to make her understand. Our stuff is our stuff, even if she wants it. Other people’s stuff is other people’s stuff, even if she wants it. Just because she wants it doesn’t mean she can claim it as her own.

But she doesn’t get this. Which is why, as Maura and I were leaving my friend’s house, I searched her backpack. And found two things that didn’t belong to Maura. Once home, I found two more things that belonged to my friend in Maura’s backpack. It was disappointing – because Maura choose to steal books when I know my friend has a fantastic jewelry collection. Luckily, this friend also has a fantastic sense of humor and applauded Maura in her choice of books (an art history book and “The Agony and the Ecstasy”).

It’s not easy though when you live with this every day. Every day, she’s swiping a sibling’s possession, sometimes one they need, like their wallet or their cell phone. Maura has two of her own wallets, but she wants her siblings. She wants to take Miriam’s sketchbook, even though I have given Maura her own notebooks. She wants my legal pad full of notes, even though she has her own legal pad. We can provide her with things, but she wants more, she wants the new stuff that comes in. She has little self-control over it at times.

Which is why, despite owning several backpacks of her own, Maura last night swiped my new backpack again. Even after I explained that it was mine, and she understood that explanation enough to be unhappy about it. I didn’t see her swipe my backpack, Josh found it tucked away in her room this morning. He quickly hid it while she was in the bathroom and made her choose one of her own backpacks.

I don’t know if this is a phase or not, but even if it is a phase, I am braced for the fact that it is a long-term phase. Maura goes through phases slowly, so this compulsion to take other people’s stuff? Could last years. Some days, I’m okay with that. Other days, it’s just really tiring.

But for now, I’m just going to stake this one claim on this one backpack I bought for myself.

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