Editor’s note: George Stern, a college student and brilliant wordsmith who is deafblind, shares the lasting impact of contributing to his family as a child.
1: Through the Window, Softly
So, what would’ve happened was: my mum, Ms. Norma, Ms. Marie, or some other Ms. in our constellation of neighbors would’ve locked herself out of her apartment. Simultaneously, the power would have gone out because, of course, it would; Murphy’s Law: anything that can go wrong will go wrong.
Then there’d be a gathering, a colloquy, a plotting, and planning, at the end of all, a screen would be pried off, an unsecured window levered up, and I’d scramble through into familiar darkness to unlock the door from within.
In retrospect, I don’t remember there an explicit why for me being the one to go in. It might have been because we were in the early nineties, and dignified Black ladies did not go clambering through windows, tearing up their good stockings. Or maybe it was the bone-deep aversion many sighted people have to navigate even familiar spaces in unexpected darkness. (This was before cordless phones, let alone smartphones with built-in flashlights.) Personally, I think some ancient, communal mother wit was at work, whispering to all those women that every child needs a mission, a moment, a memory of having been their community’s hero or shero or theyro.
2: Into the Wheelbarrow, Dangerously
** Thirteen years later** I stood in the bed of my dad’s pickup truck, flushed to make holding a 75-pound bag of gravel steady seem effortless. Flushed, too, with pleasure at being invited to work alongside my old man for the first time in forever; he’d been so often gone, long-haul trucking, and I’d retreated deep into a world of NLS audiobooks and daydreams. Unloading a truck together felt like a veritable reunion. A short-lived one, as it turned out.
I was so excited, so hyped to show my competence and strength, I heave-hurled the bag out of the truck before my aunt Mava was quite set with the wheelbarrow to receive it. The wheelbarrow did what any self-respecting wheelbarrow would do when too much weight lands precipitously on one end: flipped like an overworked seesaw, narrowly missing Auntie’s ducking head. After that, I was dismissed from the job site, retreating back into my books and daydreams, feeling more acutely like an inconsequential ghost: detached, irrelevant, immaterial.
3: Whispers in The Onion Palace of Memory
People who perform amazing feats of memorization talk about building memory palaces that they “walk” through, squirreling away or retrieving information at will.
My palace is an onion – multilayered, sharp, delicious when caramelized – and it’s haunted: full of things that jump out and say “boo!” when I look for a specific memory. Like, when I recalled being a benevolent burglar and went chasing the joy, the pride, the thrill of it to share with you. A ghostly crowd of careers past mobbed me, whisper-screaming for their own slice of immortality through writing: “Us, too, remember us, too!”
And so …
– My Career as a Terrific Table Washer
– My Career as A Debonair Door Holder
– My Career as a Scarily Accurate Human Scale
– My Career as A Delicious Drink Maker
– My Career as a Guide Dog Advice Guru
– My Career as a Soothing Soundtrack
– My Career as The Cake/Cookie/Muffin Man
– My Career as a Conditioning Coach
– My Career as An Access Agitator
– My Career as The Announcer of Auras …
Have you noticed a pattern?
The true value of these “careers” and all the others I could have mentioned isn’t in their monetary earning power but rather in their social impact: the humanizing, existence-affirming ripple effect of mutual acknowledgment that comes from contributing to the life and lives around us, from making even the tiniest positive difference.
4: Participation Is the Trophy
I am reminded of a middle-aged, possibly-autistic Swedish lady who exists only in a book. She walks out on her cheating husband and lands a job – her first in forty years – as a soccer coach for a small-town youth team. She’s motivated a lot by an incredible capacity for love and the determination that the world should know and acknowledge: “Brit-Marie Was Here!” That’s the title of the book, written by Fredrik Bachman, which I highly recommend.
Anyway, Brit-Marie is my hero because she fights the fight that many other people with disabilities and I find ourselves fighting: against a society deeply skeptical of our capacity to contribute meaningfully to the world around us, except maybe a bit of sunbeamy inspiration through the miracle of our improbable existence. Our different bodies and different ways of being, doing, and thinking are reduced to collections of “special needs,” discussed endlessly in terms of the resources we take: space, money, time, personnel, and equipment. What gets lost in this lopsided narrative of taking? The reality, that’s what.
When I see how many of my fellow people with disabilities flock to the resource-sharing, community-building elements of social media; when I hear about a friend with a disability and full-time job throwing themselves joyously into another volunteer project; when my mood lifts because I’ve held a door for someone, and they’ve thanked me, and I’ve smiled “You’re welcome,” – when I witness all these things and more, I see a people driven, desperate to give, and we give of our entire, multifaceted selves. So, you see, it’s not a participation trophy we’re after when we agitate and advocate for access; it’s the trophy of participation.