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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

 

 

 

 

 

 

 

 

 

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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

 

 

 

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.

 

 

 

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