Intro
“You’re such an inspiration!”
That’s a nails-on-chalkboard phrase for many in the disabled community. Just because we can do simple things, like get out of bed every day, with the less-than-stellar hand we’ve been dealt doesn’t mean we deserve adulation. (Side Note: with chalkboard gone the way of the dodo, what’s the equivalent phrase now: nails-on-iPad?)
This is something that Julie gets worked up over more than Brad. Admittedly, that’s probably because she’s been admitting her disability for literally decades longer than him.
Julie Gets Personal
I have a disability.
What is your reaction to that? Are you uncomfortable? Curious? Astounded? Indifferent?
Is your first thought…”Wow! You are SUCH an inspiration!”
Let me be clear…
I. Am. Not. Your. Inspiration.
Oh, I’m sorry…are you uncomfortable now? Did I call you out?
Good.
I hope you are uncomfortable.
Do you feel uncomfortable by my unveiling of such intense actualizations because you are “typical” or “intact” and cannot relate to my experience – or the experiences of others – with physical disabilities?
Or, perhaps you have questions that you are too afraid to ask for fear of offending?
Maybe you are hesitant to seek out the information you are wondering about because it will reveal a deep truth about yourself and you aren’t quite ready to pull back that curtain…espeically with someone that is so wildly different from yourself?
My theory – is that because you are unable to relate, that it makes you nervous because you are not quite sure how to act around me all of a sudden?
Your discomfort, your squirming around in your seat, your desire to look everywhere but at the remainder of this blog post is how I feel every single day of my life as I deal with hearing loss.
As you read this, I wonder if you are afraid to confront and acknowledge the fear and emotional toll that this physical disability takes on me. Are you afraid to really look at me and put yourself “in my ears”, as it were?
Is that why you prefer to hold me at an arm’s length and admire me as though I am a museum piece to be marveled at as opposed to someone with a disability?
I wonder if you want to avoid the deep dive into the discomfort, the emotions, your own internal battles about it – and prefer that I remain an inspiration. You prefer to prop me up on a pedestal, and praise me, and crow about all that I have achieved in spite of my disability.
Well…I have news for you…and a warning to heed…
The disabled community is the only minority group that anyone can join, at any time.
We are not your inspiration.
Brad Talks About a Talk
The first time Julie’s eyes went wide and her voice went high, at mention of being an inspiration, I thought immediately of Stella Young’s Ted Talk.I watched it shortly after it came out. I’ll freely admit that I felt my cheeks burn with shame. I had consumed the very inspiration porn Stella rails against. I’d yet to start talking about my hearing loss back in 2014. Which means I hadn’t even started to consider myself disabled. Hell, I still struggle with that label. I’ve been bluffing for so long, and been told I’m not deaf because I have some hearing more than once, that I’ve internalized the stigma. Which made me ripe for picking up the porn that Stella talks about. I’m going to hit on a few points of her talk but not all. You really need to watch the thing yourself. My words can’t do it justice. Fret not, dear time-crunched reader, it’s under 10 minutes.
She starts off talking about when her parents were told a community group wanted to nominate her for an award. Her parents were flummoxed. Why should she be nominated? She’s not achieved anything. By Yoda’s point ears! Insulting a disabled person? How dare they! Then she moves on to pointing out that most people only see disabled people “as objects of inspiration”. I was poleaxed. She was right. We so rarely see disabled people. Or do we?
Julie and I do our show for one reason: to hear ourselves talk. Ok, perhaps it’s more than that. But talking is central to it. We want to talk about our invisible disability. Even as we provide a bit of color to our devices, it doesn’t always bring them to other people’s attention. I’m near the other end of the visibility spectrum from Stella but I still struggle with the inspirational attitudes society has towards all disabilities. Society isn’t comfortable with the disabled. They don’t want to hear about it and they most assuredly don’t want to see it. Personally, I think this is, in part, born from guilt. Society fails disabled people of all stripes. Being confronted with someone who has to struggle to do what able-bodied people take for granted calls for one of two reactions: guilt or inspiration.
Ours is a society that is all or nothing. But, like Stella goes on to say, that’s the lie society feeds us all. Especially when it comes to disabilities. It’s not ok to be inspired by disabled people simply living in a society not made with their needs in mind. But it is ok to be inspired by little things. She mentions how learning from another disabled person that using BBQ tongs to pick up something she’s dropped inspired her to do the same. She also cautions against the saccharine blatant lie that is the quote “the only disability is a bad attitude” because “No amount of smiling at a flight of stairs has ever made it turn into a ramp.” And I can attest no amount of smiling has ever made certain voices become clear to me.
This is how pervasive the lie is: I teared up at the end of her talk. Not only because she was, despite her best efforts, inspirational but also because she ends with a vision for the future. She wants a future where disabled people are seen and heard, where they’re part of society, where they’re doing the best their bodies allow them.
Wait.
I shouldn’t be using “they’re”, I should be using “we’re”.
Because whether I am comfortable with the label or not, I am disabled. See? Even a disabled person buys into the lie.
Our Hearing Things show?
No place for inspiration.
Normalize talking.
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