Tuesday, December 20, 2016

"There Goes Your Hero": An Accessibility Series Post

Chris Frantz is the artistic mastermind behind my blog design and the Accessibility Series logo (check out her amazing business, On a Roll Designs). I've known Chris Frantz for 20 years, mostly as an acquaintance; but it wasn't until we reconnected on Facebook that we became closer. I found out over Facebook that she has cerebral palsy, like me-- or, as people with cerebral palsy on the Internet call it, we're both "ceeps"*. When I first thought of the Accessibility Series, the very first post I ever wanted was this one, originally published by her  on her personal website in November 2013.

 “What are you going to call me?”

I looked up, probably from reading celebrity gossip. “What’s that?”

“On the blog,” my husband clarified. “What are you going to call me?”

It was a fair question, and one I’d been posing to myself since I’d decided to start this project. See, in my years on LiveJournal he came to be known as Mr. Beets, a takeoff on my nom de pixels “Bears Eat Beets.” (FACT.) On Facebook I usually refer to him as “my better half,” “mah boo,” and other similarly corny titles. In real life he gets tagged with all sorts of affectionate nicknames, most of ‘em scatological in nature.

His query prompted all sorts of suggestions from both of us, and eventually devolved into us reciting the epic list of David Ryder’s many monikers from Mystery Science Theater 3000 (which tends to happen with more discussions in our house than it probably should HAHA IF THAT'S POSSIBLE).

By the end we still didn’t really have an answer. I couldn’t come up with anything good on my own, either.

I’m going to call him Brandon. Because that’s his name.

Brandon is a lot of things. He’s a dork of the highest order. He’s a pub trivia dream teammate. He’s a sabermetrics devotee. An engineer. A borderline socialist. He’s the owner of an insanely good head of hair and he’s our fat cat’s favorite cuddle buddy. He’s both a mature appreciator of meta humor and a giggly seven-year-old when it comes to fart jokes. For me personally, he’s a lover (as much as I hate that word), a protector, a fan, and a support. He’s a caretaker - I don't just mean he hugs me when I'm down or makes me soup when I’m  sick; my well-being and the fulfillment of just about every basic need is essentially in his hands. Most of all he’s the best best friend - he listens, he makes me laugh harder than anyone else, and he calls me on my shit.

What he is not is a hero. 

I’m not trying to be a dick about it; I’m repeating something he’s said himself many, many times. You might be confused by my need to point that out, but we’ve been married almost ten years and together over a dozen. When some people realize he’s not doing his good deed for the week by taking a wheelchair user out for a day out but that he’s actually *gasp* married to said wheelchair user? WILLINGLY?! I’ve seen the looks. I’ve heard the comments. I don’t just mean the awestruck whispers as we pass by or the earnest murmurs he’s subjected to in quiet corners, either. Nope, these are gushing remarks spoken to our faces. Intentionally. “You’re so brave,” they’ve intoned. “You’re so strong.” You’d think Superman had just saved a busload of children from careening off a bridge and into a river, for god’s sake.

It’s infuriating.

Sentiments like these are always shared with the very best of intentions, of course. While I mostly let a lot of the silly commentary-that’s-meant-kindly-but-has-definite-dismal-subtext go with a smile and a nod because I’m willing to give these folks the benefit of the doubt/expend my emotional energy elsewhere for my own sanity’s benefit, this shit sticks in my craw. It’s also not because  a true hero should NOT be that terrified of spiders. And it’s obviously not because I can’t stand when my husband gets complimented - hell no, compliment away! You’ve got a buttload of attributes from which to choose!

It’s because – despite the intentions – it’s really, really hurtful. To both of us.

Not that we as a culture seem to have a firm grasp on the concept of heroism, but in my humble opinion it should involve at least the saving of stuff (preferably lives - bonus points for babies! - but historic buildings and priceless works of art are good too), and/or dramatic personal sacrifice for the betterment of mankind. (A genetic mutation, a traumatic backstory and a flashy suit definitely elevate your game but aren’t required.) We’d be the very first people to tell you our life together isn’t always easy. Granted, it’s mostly for the same reasons all relationships aren’t easy, but yes, there are a few that are exclusive to ‘ships like ours (Please note that this article didn’t originally have “Heartbreaking” in its title and I find the decision to add it to be a poor one. Please don’t let it distract from the content) They can add stress and subtract free time. They definitely tip the scale of responsibility in all forms much further on his side. But you realize how hyperbolic (at best - completely untrue and awful at worst) it is to refer to the guy that married me as a hero? With that one label you’ve suggested Brandon’s mired in a bog of never-ending suck being with me and he bravely, stoically endures it so…what, exactly? So a poor crippled girl feels better about herself? So no other guy gets stuck with such a miserable life?

Do you know how shitty that makes us feel? Do you know invalidating that is, of us and all we’ve built?

If not, here’s the answer key: Super-duper shitty. Big-time invalidating.

Here’s the truth: a dude fell madly in love with a chick who - judging by all the reports I’ve received, anyway - makes him really happy.

She felt the same.

He didn’t look past her baggage. He looked right at it, thought about it for a hot minute, then shrugged like it wasn't anything. He knew the deal going in, and she was honest about how tough it might be. He asked, she said yes, and - freely and of his own volition – he married her. Were either of them fully, totally, 100% prepared for what being married and building a life together really-for-real meant? OF COURSE NOT. Did they learn and grow together? Absolutely. Is there still, to this day, some not-so-fun stuff to contend with - some of which they never even considered – that they do their best to tackle anyway? Yessir.

Half the world should get awarded medals of heroism, y’all, because last time I checked? That’s pretty much how it goes in EVERY. GOOD. RELATIONSHIP. EVER.

I know I shouldn’t get as ranty about this as I do, and not just because we’re happy. There’s hard work, but that happiness? Makes it more than worth it. More importantly comments like these really aren’t about us at all - I know from whence this sentiment comes, and I bet you do too, smart cookies that you are. The real negative implication falls squarely back on the speaker.

If you run “you’re a hero” through a Truthy Translator, you know what you’re left with? A very simple, very sad personal confession: "I wouldn’t want that. I could never do that".

Some extra work for a lifetime of happiness? You wouldn’t want that?

Guess it really is a good thing you aren’t married to either of us, then.


*People with cerebral palsy who dislike person-first language are in a quandary, because there is not a  standard way to say "person with cerebral palsy" WITHOUT using person-first language. Thus, the term "ceep" was born. This word remains nonstandard and at the moment is only being used by members of the community. 

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