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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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What YOU can do

17 Sep

So my last post hit a nerve with people.

I wrote about how Maura had a very public meltdown. People stared. People walked past us. People sort of made comments after looking away.

Or…you know…the norm.

I also wrote how no one helped. So naturally, the comments were “I don’t know how to help!” and “What could I do to help?” and “I don’t expect they’ll want help so I don’t offer.”

But mostly “Tell us what we can do to help.”

I’ve mulled on this. I responded a couple times to comments. I brought it up to other bloggers who are in a similar boat as us. Then I got really annoyed.

Because the answer is simple.

Just offer to help.

“Is there anything I can do to help?”

There. That’s it. If I don’t need help, I’ll respond with “No thank you.”

This is where you don’t get offended, or stop every offering help to anyone again. Because someone may say “Yes, please, could you…” – and then, you see if you can do the thing they ask. It may be holding a door open, or getting a cart, or pushing their cart to their car while they safely get the person melting down to the car.

It’s just that simple.

“Is there anything I can do to help?”

I mean, really, do you have to ask what you can do?

If you’re uncertain about if your offer of help will do more harm than good, then look to the person with the person having the meltdown. Catch their eye and mouth the offer. If they wave you away or shake their head, then nod and smile and walk away.

There, that’s how you can do this. Again, pretty simple, huh?

And here’s the other thing…

Yes, I know it’s natural to want to stop and look. I got one comment of how they check to make sure abuse isn’t happening. I got a lot of “it’s human nature to look”.

Trust me, I get it.

But when you keep looking…or let your kids stare until their eyeballs roll out…or as we pass by, turn to mutter to your shopping mates…that’s going beyond human nature. Now you’re just making us feel like a sideshow.

I did not get any “You’re doing a good job mom” from anyone. Not even a “I feel your pain, kids are horrible, ammiright?” bonding. Not even one encouraging smile and nod of solidarity.

No, I got looks…and hushed tones…and raised eyebrows…and people making us feel like we were in the way (okay, we were in the way, but still…)

There was only one mom herding a trio of young teens past us…and the teens all began to gawk, and I heard her do a “Move along, nothing to see here” sort of thing and stopped their gawking.

To that mom…thank you.

To the rest of you – that’s something else you can do. Even if it’s telling yourself “stop gawking”. It may be human nature to initially look, but it’s human decency to not gawk at someone in a meltdown.

But really, you’re all overthinking the matter.

“Is there anything I can do to help?”

That’s all you really have to do.

And quite frankly, it’s a bit frustrating that I have to spell it out for people. I’m sorry if that offends, but my therapist says I need to start saying how I really feel about things.

 

 

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                            Yes, that’s a squirrel. No, it has nothing to do with this post.                                                                  Photo by Geran de Klerk on Unsplash

 

 

 

 

 

 

 

 

 

For the Members of the Public – you’re welcome

2 Sep

Wednesday we went to Target.

I know, shocking.

The girls and I had gone out, done a couple things, and I needed things like eye drops, Keurig cleaner, and maybe new shoes for Maura. Target was chosen for its ability to give us all those things, plus maybe a Starbuck’s if we were all good.

Starbuck’s never happened. Instead, by the end of the trip, I was opening a bottle of Coke I grabbed while in line for the register, and said to Miriam “Momma’s gonna pour some rum in this Coke when we get home.”

#keepingitreal

Maura had a meltdown coupled with a battle of wills. Hers vs Mine. Damn fecking back to school section, the one that caused a serious meltdown the first time we saw it, but that we had overcome and were able to navigate, struck one last time in its death throes. To sum up – she wanted a backpack, I said no, cue 20 minute power struggle.

Several minutes into this, I called Josh for help because Maura was now hugging the backpack to her chest and I was determined to stick to my “I said we’re not getting the backpack.” Sure, I could have backpeddled, but I’m trying to teach her – like I taught all my other kids – that we can’t get every thing every time, especially if we have at least five of those things in our bedroom at home. So every time she put it in the cart, I’d take it out, put it on the shelf, and say “I said no.”

When Josh got there, we were actually right by the doors. Josh gave her the “I hear you’re not listening to Mom” speech, and told her she had to leave the store. We left Miriam with the cart, and I escorted Josh escorting Maura to the car. All the way, I would say things like “We have to leave because you’re not listening.” and “I said I wasn’t buying that for you, and I’m not.” and basically calmly narrating what we were doing and why in a tone that carried.

Not for me.

Not for Maura.

No, I was doing that for you, the public. You, the group of four adults catching up by the doors who paused to look at the scene we were creating. You, the single guy who paused to let us go ahead of him through the doors (btw, thanks). You, the couple walking in. You, the store associates who looked our way.

“We’re going to the car because you won’t listen to Mom. Mom said no.”

I walked with my husband not because he’s incapable of handling Maura, but to give him the presence of another female as he escorted his daughter, who was digging her heels in literally, to the car. A man escorting a teenage girl screaming to a car looks bad. A man and woman escorting a teenage girl screaming looks more parental. I wasn’t walking with him to help, I was walking with him to make sure someone didn’t call security on my husband and daughter.

Because you are all watching, you people in public. You all stop and turn and watch for a moment or two or three, and you watch us. Why? I don’t know, because we’re making a scene. Because the scene she’s making isn’t socially acceptable at her age and height? Because you’re curious or just plain nosy. Because it’s something to tell someone later. Because you want to make sure she’s okay?

I think mostly it’s because you’re nosy. So here’s some facts –

It’s a meltdown. A meltdown isn’t behaving badly, it’s losing control. My job with my daughter is to help her regain control. In this case, as in many, removing her from the situation is the most helpful – she doesn’t have the reminder of what caused the meltdown in front of her.

No, I can’t predict these things. That instance – just happened. She had been golden and responsive to my redirections just moments before. I think the feeding frenzy in the school section set her off. So really, public, this was your fault, not hers.

It’s part of Maura’s learning curve, so we roll with it. Yes, that means sometimes, it happens in public. No, that doesn’t mean I’ll stop taking her out because how the heck is she supposed to learn if she’s a recluse? Not to mention…

No one helped us.

Not one offer of help, or a kind word. There were a couple moms who told their kids to keep moving, nothing to see here, but there was also one mom who didn’t notice her child laughing and pointing at my daughter (she got a stern look and a head shake of “No” from me though.) There were a lot of you going around us, giving us a quick glance or three, and then you went into the backpack section to buy backpacks, thanks a fecking lot for that. Okay, you didn’t know, but inadvertently, you didn’t make it easier.

No one made it easier on us, so why do we have to make it easier on you?

I told my therapist about this incident. She asked how I felt during it all.

“Well, I had to remain calm.” I said.

“Yes, that’s a given. But how did you feel, knowing all those people around you were watching?”

“Honestly? I ignore them. I’ve learned to put on blinders.”

My therapist was impressed.

But I have. I’ve put on blinders to most of the looks, the stares, the whispers and glances. I’ve had to, because none of you matter in that moment. This time was harder because we were in a main aisle, and people had to walk around us. I caught more than I usually do.

Besides, I don’t need to see you there to know that you are there, watching, judging. Everything I do in public to help my daughter is tinted with the personae I put on for your sake. The loving mother not showing frustration – that’s for you, the public. The wife walking with her husband and daughter – for you all. The calm mother stating firmly but never ever angrily how we have to leave the store because we can’t scream in the store – all for you, Members of the Public.

If I had my way, I’d probably be more “OMG kid, really? Get up off that floor now, move!” But I’m not allowed to do that. I’m also not allowed to sit on the floor and cry with her. Just like I’m not allowed to open up a bottle of wine and drink it through the store, even though the store sells wine. I have to embrace the role of saint in public when my daughter’s having a meltdown because my daughter is disabled, and parents of disabled kids are either saints or monsters.

So I’m a friggen saint.

And most of you don’t even appreciate it.

 

 

 

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