The problem with making small talk about my big disability

Several years ago, I waited tables at a popular Toronto restaurant that drew people in with the promise of a one-of-a-kind opportunity. Those brave enough could head down a flight of stairs, turn off their smartphones, and dine in complete darkness.

That's right — lights out. 

The thinking was that, for some, flicking off the lights and closing your eyes could be eye-opening — a glimpse into what it's like to be blind. Moreover, pulling the plug on vision would brighten the taste buds, transforming shrimp into prawns, beef into venison, water into FIJI Water.  

And there I was, one of a handful of "talented, visually-impaired servers" promised to guests upon reserving a table. 

"Watch out for the stairs," I'd often say when guiding new tables into the darkness, knowing full well that there were none. "Just kidding!" 

Cue the thunderous laughter, the sighs of relief. (I actually stole that zinger from another server.) 

After some time spent in the dark, re-entering the brightly lit waiting room of the restaurant was always blinding in its own way — a flash of clinking coronas and off-key happy birthdays. It's there that I greeted Brenda and her family of five.

I barely got out a "hello" before she fired off her all-too-frequently asked question:

"So, how did you go blind?" 

Here we go again.

"Sorry, Brenda," I gulped, "but your Groupon isn't an all-access pass into my life story."  

At least that's what I wanted to say. Instead, I steered the conversation in a slightly less personal direction, giving her the rundown on my latest psoriasis flareup. 

"Thankfully, nobody can see your dandruff in the dark!" I quipped over my shoulder.

The framework is always the same. A stranger asks an intimate question about my disability. I get uncomfortable. I deflect with humour. I do this because I know Brenda doesn't realize the weight of what she's asking, that she doesn't really want the answer — which, truthfully, is studded with heartbreak: with losing most of my vision in a matter of months, with nearly dropping out of university, with scientific jargon, with trauma. And after I'm finished turning my movie reel, would she even remember my name? Therein lies the problem.

It's an answer that Brenda, amidst a backdrop of wailing babies and "Order up!"s, ⁠can't respectfully walk away from. 

Unfortunately, it's also a question I get on a weekly basis, any time my disability becomes apparent. Only sometimes, it isn't so easy to deflect, and I can't help but take the plunge. Here's what I mean. This happened last month….

On a sunny weekend morning, I woke up in my beautiful new apartment only to discover — coffee already poured — that I was out of half-and-half. Still groggy, I wandered outside to hunt for a solution.

"Aha!" 

Directly across the street stood a corner store with a wide selection of potted plants and cigarettes. Hidden in the back was a small dairy fridge. I grabbed the last carton.

"Morning. Just this, please." A tall, friendly-looking young man smiled from behind the counter. "On credit." 

"Go ahead!" he said.

"I'm actually visually-impaired, would you mind helping me with the machine?"

After a little fumbling, he bypassed a few of the screens for me. "OK — you can put in your PIN." 

I oriented myself using the "5", which has a braille dot, and got to work. Halfway through, the question came from behind the counter.

"So, uh, what happened? You know — with your vision and all."

This time I found myself not in a stuffy, chaotic restaurant, but in a sanctuary of lotto-tickets and candy bars, filled with morning light and an occasional chime from the front door. Still half asleep and sharp as a pillow, reaching for the movie reel — instead of rerouting with a joke — actually seemed like the easier option this time. Less rollercoaster, more merry-go-round. I took the bait. I started spinning.

"Well, four years ago, while studying to be a visual art teacher, I was diagnosed with a rare deteriorative vision loss disorder. A few months later, I was legally bli⁠—"

Just then, a man behind me started tapping his toe impatiently, punctuating my story, unravelling it. I'd never seen someone more eager to pay for and crack open a Perrier. My train of thought veered off.

"Anyway, so I, uh — life's been crazy, but I'm trying my best! Lots of sacrifices, but there's a lot to be—"

"Cool man. Yeah, I'm pretty blind too, can't see a thing without my glasses. Need a bag?"

The door shut with a chime. I was left at a dead end. Opened up only to be stunted by the slam of my corner store shrink's hourglass. As always, I'm unsure of why I even tried, unsure of why the question was asked in the first place.

I think it's because disability is still a big deal. It's the elephant in the room until everyone clears out. Then, it's still an elephant. But in a one-on-one context, it seems to take on a new magnetic charge, suddenly demanding attention. People want to approach it, and can't help but address it. It's mistaken as a perfect candidate for small talk. Because small talk is, after all, the thing we can talk about most readily, the lowest hanging fruit, the shortest mental leap, that which is right in front of us. Sometimes it's the weather, sometimes it's the Jays, and too often it's my disability.

People are also just curious, and I believe that they're well-intentioned. They want to show they care. To reach beyond the surface and create a deeper connection. So when disability and its cavernous backstory are so out in the open, why not ask about it? 

Why not spelunk?

Because that's not how you create a connection. Connections are nurtured. Without setting up that initial foundation, diving in can instead feel like an invasion. And truth is, the backstory of my disability isn't that informative. It isn't really about being blind, here and now. It's about what it's like to grieve. And we all know what that's like in our own way. 

This isn't to say we shouldn't talk about disability. In fact, that's the opposite of what I want. I want to be an educator, and I want people to ask the right questions. Questions that are productive, questions that build awareness, that equip people to be allies. Questions that allow both myself and a stranger to walk away with something valuable. 

Questions that actually give insight into what it's like to live with a disability. Again, here's what I mean...

Let's pretend I'm at my favourite grocery store, getting my favourite snacks: grilled cheese and fruit gushers. I know — yum right? As always, I enlist the help of a grocer to assist in gathering the ingredients. This time her name is Ava.

"Hi Ava, nice meeting you. I'm visually impaired, would you mind helping me find a few things? I'll just need you to describe the options for me. I want to make an out-of-this-world grilled cheese."

Ava guides me around, laying out the land of goudas, bries, cheddars, and emmentals. In between stops, we chit-chat. She learns about my job, I learn about her English bulldog. Importantly, she knows my name. Importantly, we've had a conversation. At the bread section, we share a laugh over some of the more inventive loaves.

"Bread with quinoa in it? Man, people are so wild!"

It isn't until the pinnacle of our journey — the fruit gushers aisle ⁠— that she asks about my disability.

"You know, I have a friend who's visually impaired, and sometimes I find it challenging to describe things clearly for her. Any tips?" 

With no need to set up a film projector, I dive in, happy to answer. I explain how vision impairment is on a spectrum, how it sort of depends on what type of vision her friend has, which Ava might consider asking her about. I explain how, regardless, people with low-vision generally like concise descriptions, to use words that pack a punch but to avoid over embellishing. Not FIJI water, just water. 

Then, I thank her for asking.

On my way out, I can't help but feel like I've left with something valuable, and I'm not talking about the gushers.  

On any given day, the grocery store is just one place where I need to disclose my disability. Where it's given a presence; a weight; tusks. It's here — lit under the spotlight of my disclosure — where it can seem to others like the obvious thing to talk about. The only thing to talk about. And, because people see a story within disability, they mistakenly reach for its glossy cover. This is when, in late night pharmacy lines and early morning coffee shops, I'm made to revisit some of the hardest moments of my life. I am blindsided. 

But Ava's question doesn't reach for a story. Instead, she taps into an experience of my disability that is more long-lived and practical. Not a short period of grief and loss, but a much longer one of what it's like to be on the other side of that. What it's like to be blind, here and now. Next time she gets lunch with that friend, she'll be better at describing the menu. When a waiter comes by and asks, "What'll she be having?" ⁠— expecting her to speak on behalf of her blind friend ⁠—  she might more confidently say, "Why don't you ask her yourself?" And the next time someone with low-vision visits her grocery store in search of a fruity snack, she won't assume their vision is the same as mine. Instead, she'll ask them what they need, how she can best be of help. Now, she's a better ally.

And although Ava mentioned a friend, you don't need a personal connection to start a conversation. It's just about assessing if it's a good time and place, and approaching the topic in a sensitive and thoughtful way.

I can't speak for everyone who's blind, or everyone with a disability. For me, disclosure is a choice. For many people with disabilities, it's not. Their disability is always visible; their story is always within reach. This is why a shift in questioning is so important. I think that most of us like to be educators, to share a perspective that makes the world a more accessible place. So when our lived experience is brought out by the curiosity of others, in a way that sidesteps the heartache and builds allyship, it's rewarding. Like I've provided them with something that makes a difference. Something illuminating.

It reminds me that sometimes, I like the small talk. 

Taylor Katzel is a disability- and queer-identified writer show works in production and accessibility at the CBC. Lover of podcasts and cereal, preferably together.

For further exploration of how people with different abilities feel about the awkward questions they're often asked — and their answers — stream the The CBC Gem original series "You Can't Ask That" now.