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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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Everyday Caregiving

6 Nov

It’s the things we do by rote, things that have become second nature, things we don’t even realize we do until someone looks at us with one eyebrow raised and a “Well, that’s weird” expression. Things we do for a teenager who should have been doing these things for herself years ago. Things we avoid in order to keep the peace.

Those things have become our norm.

I am Maura’s mom. I am also her full-time caregiver.

A mom teaches her child life skills so her child becomes an independent adult. A caregiver fills in where those life skills have been hampered or have no developed. Two very valuable vocations, one pays crap, the other doesn’t pay at all. Lucky me, I get to do both for free.

Good thing my boss is so cool.

Today, I did things for Maura like wash her hair, blow dry it, helped her get dressed, helped her turn on a show, helped set up her tablet so that it could charge via extension cord. I threw her clothes in the washer. I shall throw them in the dryer, and put them away for her. I took care of other needs she had that I won’t get into.

I also watched her pull out pizza boxes and dish herself up some cold pizza for breakfast like a regular teenager, intervened when she picked a fight with her sister over the use of the television, and fought her for the chocolate her brother gave both of us.

There’s so much normal interspersed with the extraordinary. And the thing is, the extraordinary I do for her is something expected of all moms when their children are infants, toddlers, preschoolers. That stuff extended its need naturally. It’s not like one day she was blow drying her own hair and the next day I had to do it for her. I’ve always had to do it for her. Someday she may be able to do it on her own.

And that’s the hope I’ve been given. For each task I do for her now, each act of caregiving, I still have the hope that she can manage it a bit on her own someday. Any step of independence, no matter how small, is huge. Last year, I still had to prompt her to get out of the bath. And by prompt, I mean plead and bargain and empty the tub first before being able to pry her out of it. Her ending her bath on her own is amazing.

She also now will let the dogs out or back inside when asked. She can take her plate to the kitchen. She could someday empty the dishwasher or take bagged up trash to the garbage can. She can help around the house, which would be awesome.

But for now, I’m still cleaning her room.

Outside of the house, it’s a balance of giving her freedoms and keeping her on target. There’s verbal prepping that I must do, triggers to watch out for, and always on the look out for quick exits and restrooms, depending on the emergency. It’s how I’ll try to park so that she has extra room to open the car door without hitting another car. It’s worrying the few times I let her go into the bathroom alone. It’s hoping we can hit three stores only to change plans after one. It’s both an opportunity for self-advocacy and a lesson in following rules and taking turns. Mom needs to go to the dog food aisle. Yes, we can look at clothes. No, we’re not going to the toy aisle today, you already picked out a book.

It’s letting a stranger ask her a question, and waiting to see if they understand her before stepping in to provide translation of what Maura said. It’s letting her move at her own pace when the person behind us thinks we’re going too slow. Which happens a lot. On stairs. It’s backing her up in her the right to own her space in this world. It’s letting her choose the music in the car, even though shotgun should shut her cakehole because driver picks the music.

It’s letting her choose her backpack, choose her jacket, choose if she wears socks with her shoes. It’s standing back to let her put on her own socks and stepping in to help with the shoes. It’s cutting her fingernails.  It’s fixing her plate at dinner time because she will overfill it. It’s letting her pour her own drink. It’s pulling back her hair into a pony tail every time she asks, but asking “Do you want one or two?” first. It’s putting sheets on her bed because she just. can’t. do. that.

It’s finding the energy to go watch when she says “Watch Mom!”. It’s sitting to watch a movie for the 87th time because she’s patted the seat next to her on the couch. It’s high fiving her, hugging her, tickling her because she still needs those things constantly. It’s me at my friend’s party, being the one checking on her teenager every five seconds while on the swing set – partially for safety reasons, and partially because the girl is enjoying herself so much, I can’t help but mirror the big smile on her face.

It’s everything, all the time, twenty-four hours, seven days, 52 weeks, and so on, and so forth, world without end, amen.

I’m lucky she puts up with all my interference.

I’m lucky that this very cool kid lets me hang out with her.

I’m lucky that when I leave, she misses me, and when I come back, she gives me the rockstar treatment, screaming and laughing and hugging me now that I’m home.

I’m lucky that she makes this dual life of mom and caregiver not just easy, but fun.

It’s exhausting at times, and the pay, as I said, is less than crap. But the rewards – getting a front row seat in her amazing life – are worth it.

 

 

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[photo of Maura, long brown hair hanging down, pink jacket and gloves on, face beaming as she enjoys a rare PNW snowfall]

 

 

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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