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Tag Archives: invisible disabilities

To the person who doesn’t want to give up their subway seat for my kid…

9 Jul

This article popped up in my feed. I read it, and I’ll admit, part of me did agree with you. But then you sort of glossed over that disabilities may not be seen by the naked eye. And that’s where you lost me. And since I was willing to hear your side – and again, even agree with some points – I think you now need to hear my side of things.

When we lived in Dublin, we were blocks from a Luas station – the Luas being the light rail train that ran from the more suburban areas of Dublin to City Centre. As someone who grew up with commuter trains in Chicago, I was enamored of the Luas. Trains get people places, and for less than what parking would cost.

My daughter Maura loved the Luas. She had her own Luas card for commuting. Because for the first few weeks of school, we had to commute by train. The commute meant walking the five-ish blocks to the train station, and down two flights of stairs to the platform (or use the elevator), take the train to our stop, then walk another several blocks to her school. Since we were traveling during the morning commute time, the train was usually full when it hit our stop, and packed by the time we were ready to get off. I soon figured out a spot that worked for us – the last car, by the back door, against the wall where Maura could lean against it for support, and a quick and easy exit. I would stand in front of her, shielding her a bit, but also shielding herself from other passengers so if she lost her balance, she lost it onto me and not a stranger.

 

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Maura waiting for the train in Ireland – 2011

 

Usually mornings went smoothly. It was afternoons that got difficult. She’d be tired from the school day, and the walk to the train could mean a series of bribes and cajoling. There was a little convenience store right next to the train where I’d let her buy a bag of popcorn if that’s what got us to the train. I would hope that we’d get a seat so she could sit and rest before having to walk home. If it was full, I’d be the mom you described in your piece, telling her she could sit soon, and nabbing the first spot available for her.

The train in Dublin wasn’t nearly as cut throat as other systems I’ve ridden on (which, on top of Chicago, I can add Paris, Barcelona, London, and yes, even the NYC subway.) The Dublin train riders were more likely to give seats to kids. Once, a school group came on, and little girls in plaid skirts were taking seats – and I watched not one, but two young men get up from their seats and move in order to give the school girls their seats, so that the teacher was able to have them all in one place. They didn’t ask how able-bodied the girls were.

Listen, I have taught my own children to give up seats for those who need it, whether it be at church or on a train. They have never balked or complained, and now, as almost grown/grown people, they are still giving up their hard-earned seats for those who may need it.

But I’ve also been the mom who needed the seat for my kid.

My very normal looking kid.

My kid who may look like she’s enjoying standing there on her own two feet.

My kid who had epilepsy that affected her balance. Who has motor skill issues that affect her balance. My kid with low muscle tone, who tires out more easily. My kid who can’t always correct or catch herself when she starts to fall, or who can’t always move fast enough to block herself when she does fall. The kid who couldn’t understand why she couldn’t sit when tired. The kid who’d be safer seated on a bouncing cornering train. The kid who, in your eyes, at first glance looks totally normal and healthy. Because she is healthy for the most part.

The one you basically dismissed with your bland statement that disability isn’t always visible to the naked eye. Because while you’re willing to write – possibly in a CYA sort of way – that not all disabilities are visible to the naked eye, you’re also ready to write off that me promising my kid a seat equates to coddling. Because to the naked eye, my daughter looks like an average kid.

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Maura – 2017

 

Now more than ever, I need that seat for Maura. Yes, she’s older, taller, and better at balancing herself. But when she stumbles and falls or needs support, she leans on me. Me, her now-shorter-than-her mom. Me, the gal with the twitchy back and inflamed shoulder. Me, who got that twitchy back and inflamed shoulder from years of helping Maura physically. Me, who would and has happily not sit if it means my daughter gets a seat.

Maura getting a seat means she gets a rest break – one that may not seem needed but will pay off later. Maura getting a seat means that I don’t have to use my own body to help hers cope and adjust with swaying train cars, stops and starts. Maura getting a seat means she won’t bump into other passengers while trying to catch her balance.

Listen, our world is more difficult to navigate because of my daughter’s disabilities. That her disabilities are invisible doesn’t make things better. Because we get judged – whether it’s for using the disabled toilet, or using the disabled seating on the train, or being judged as a coddling parent by someone’s cursory glance.

There are a lot of disabilities that aren’t visible. I personally know several kids who could use a seat on a train even though they look able and happy because their disability isn’t apparent to the naked eye. Kids with autism, kids with mild cerebral palsy, kids who have had strokes as toddlers – and my own kid, who doesn’t have a diagnosis but definitely is disabled.

And you know what? As the mom of three other children, who are all able-bodied, sometimes even those kids need to sit. They’ve had long days, or have a long trek ahead of them once they get off the train, or are just clumsy and would be safer on a seat. Moms who have been dragging their kid about town and are tired of playing goalie and just want to put him in a seat for five minutes so she can take a breather because she knows passengers will give her the stink eye if her kid bumps into them.

Listen, we’ve all been a bit of an asshole when it comes to holding onto our own hard-earned seats on trains or busses. But I’m pretty certain that kids having seats on trains isn’t the downfall of civilization as we know it. And as the mom who used to ride the Luas constantly with her own kid who did need the seat, I am grateful for every kind person who offered a seat to my daughter.

 

 

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My 14 year old graduates from 8th grade today – doesn’t that sound so normal?

26 Jun

It does, doesn’t it?

It’s so ordinary. Everyone who’s had a 14 year old goes through this. Maybe at 13, if they had a late birthday. But we all go through this.

Today, I will sit in a gym, on a bleacher or in a folding chair, and watch 8th graders in their newest dresses and nice shirts¬†and Converse shoes file by and get a diploma. My daughter will be one of them. We will be one in a crowd, a snapshot in time where we shall blend a little. There will be others there, who don’t know my daughter, who won’t know how many disabilities she has or how hard she’s worked to get to the level she’s at.

I don’t know how she’s going to manage this – will she collect her diploma and shake hands and be good with that? Or will she bounce up onto the stage, give people hugs, shout “Woohoo!” to the crowd? It’s an either/or really.

Friday, they had a special ceremony for all the kids in her program who are graduating. A private gathering for students, teachers, peer tutors, and parents. A ceremony of their own, because not every child will be able to get through today’s ceremony (though all are given the option.) They had a party afterwards as well. The teachers went all-out on every aspect of it, and honestly, it was way more than I expected going into it.

The one thing that struck me though, looking at the peer tutors – other 7th and 8th graders – and my daughter, was how different my daughter was. Among her classmates in her program, she blended a bit. But around the other students, the “traditional” students, she just looked…younger. Even though she is as tall as most. Even though her clothes are from similar stores they shop at. Even though she’s the same age or even older than some. She just looked younger.

I don’t expect my girl to blend – because she’s my girl, and we don’t blend. But it was unexpected, to see her next to a typical 14 year old, and to see the differences.

But today – today she’ll be part of the crowd. Will she blend? That’s up to her. But there will be this moment in time where she will just be another 8th grader. And I will appreciate that moment, even while appreciating all the extraordinary that went into getting to this moment.

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When things go south

16 Jan

Yesterday, Maura had a meltdown in public.

This is not new to us. When you have all the feelings and not always a way to communicate them, meltdowns happen. Usually, if we can quickly remove her from the situation, she can calm down almost instantly.

The trick, yesterday, was that removing her from the situation required get her out of the public building with great acoustics, which also meant down two flights of stairs since the escalator was broken, and over a sky bridge.

It was on the sky bridge that things got…interesting…

I was hoping fresh air would help her calm. She loves the sky bridge as it gives a great view of everything. Instead, she stopped to sob some more. At this point, Josh put his arm around her waist and got her moving forward again, even while she kept wailing.

And then two security guards stopped up.

“We heard a woman was screaming on the sky bridge…” they said.

We went into a round of “our daughter has special needs, she’s having a meltdown, we’re just trying to get her to the car, I swear she’s not being kidnapped…”

The security guards instantly backed down, apologized a little as we told them we completely understood, and offered to assist us in any way. Two minutes later, we were in our car and Maura was calmer. Two minutes out of the parking garage and Maura was back to her usual self.

But it was a moment that really struck me – they said they heard a woman. They thought my daughter was an adult. Granted, she’s five foot three, making her slightly taller than me. But still. She was seen as a woman at first.

Folks, we’ve entered new territory.

Society is more accepting of children with disabilities, especially if they’re nicely dressed, smiling, and inspirational in any way.

Society is less accepting of adults with disabilities.

My daughter is morphing into an adult with a disability.

She doesn’t look disabled. Even watching her come back from refilling a drink the other night at Five Guys, I looked at her and realized that at most, she just appears a bit awkward – but not disabled.

When I posted what happened on Facebook, my friends tried to help. “Can you get her an ID, or an ID bracelet?” I could – but that doesn’t really help make her visibly disabled to the general public.

I could probably shout out “Don’t mind us! She has cognitive disabilities and sometimes she doesn’t transition well!” but, you know, I’m kinda busy at the time to be shouting.

Maybe I could get some bat signal, or a flare gun that shoots off so people know that this is not ordinary but not scary.

There’s not a good answer for this. The only one I can think of is talking about it so that more people become aware, so that more people understand what’s going on if my daughter is having a hard time in public.

Because becoming hermits isn’t an option.

 

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