Discuss and debate the issues that mean the most to you.
I was born missing three limbs; both hands and my right leg below the knee. If you’re wondering how I’m typing this, it is simply by bashing my head against the keyboard enough times for it to eventually string the right sentences together, sort of like that whole "monkeys rewriting Shakespeare" thing.
(Fine, but the hands thing is for real.)
While my congenital defect was said to be caused by environmental pollution, growing up I was never very interested in the whys or hows of it all. I was raised by and around smart, funny people who taught me to see disability as a positive (and sometimes hilarious) thing. To equip me for playground interrogation they trained me to parrot phrases that answered all inevitable queries, the smash hit being “What happened to you?” to which I would reply, “I was born like this.”
(Lately I’ve switched it up to “I woke up like this” because sometimes you just have to treat yourself.)
Over the years I have become masterful at explaining and justifying my body to mesmerized strangers: “Here is how and why I exist! I hope it is satisfactory enough that I may now return to eating my sandwich!”
I wasn’t bothered by it because I understand curiosity for the preternatural. I’m different; people want to know about different. I get it. Plus, I have a healthy ego and on a bad day I just imagine they are paparazzi admiring my shiny, glamorous Wonder Woman hair. However, a series of social missteps in my adult years have made me rethink my approach.
Last week I went to a networking event at a venue downtown Toronto. My attendance was an extremely last minute decision that followed an internal debate of staying home to watch a "Criminal Minds" marathon. With less than an hour before the party started I threw on a dress and ran out the door; the plan was to pop in and grab a drink, sit at the back and listen for a bit, then leave.
When I arrived it was only 6:00 p.m. and people were still eating. I pulled up a stool at the bar and ordered a glass of wine. There was a man already sitting on my left side and a woman next to him. We introduced ourselves, and it turned out they were both local comedians. The guy was friendly, though a bit abrasive. The three of us chatted for approximately two whole minutes before he turned to me and said:
“Are you a Thalidomide baby?”
This is where I do a Zack Morris "Time-Out."
For anyone unfamiliar with Thalidomide, it was a sedative drug prescribed to pregnant women in the ’50s and early ’60s to alleviate morning sickness. Consequently, thousands of babies were affected with permanent birth defects, while others died.
I know about Thalidomide exclusively because I’ve been asked about it my whole life, beginning with my junior high English teacher when I was 14. The weird part about it is that every inquisitor has been over the age of 50. It seems they forget the timeline of the scandal; the youngest Thalidomide survivors are about 48-52 years old by now. Considering I don’t smoke 200 packs of cigarettes a day and I still get ID’d at Applebee's, I’m fairly certain I look far younger than that at the moment.
He phrased it “are you” instead of “were you” and so my immediate thought was, Oh no I’m not a baby, I’m actually 30 -- but thanks, I get that a lot haha.
I wanted to but didn’t say that. There were a lot of things I wanted to say but didn’t, like: Where did you buy your super stylish audacity, bruh? Why do you automatically assume I’m okay with talking about this? What if I had been in a traumatic accident and still get emotional? What if I’m the Soul Surfer and I’m trying to keep a low profile!?
Instead I did my signature robotic return, “Nope, I was just born like this!”
The exchange didn’t end there. When my wine arrived, I realized the interview wasn’t over. There was more!
“Can I see you pick up your wine glass?”
Here is something that is even more deranged than the fact that this question happened. I’m horrified and simultaneously shaking with laughter as I write this because it’s so ridiculous. Rather than responding with “Uh, no” like a normal human who was essentially just asked to perform a dog trick, I not only obliged -- I was weirdly proud of myself for picking up the wine glass.
Suddenly I was a toddler trying to impress her parents with basic motor skills, beaming with accomplishment. Had my parents actually been there they would have roasted me about this all night. My dad would have periodically come up behind me pretending to be someone else and said, “Excuse me, miss, can I see you blow your nose?” and we would all die laughing and then they would challenge me to Rock Paper Scissors or something.
They raised me to not think anything I did was amazing unless it was actually amazing. Picking up a glass of wine is not amazing (unless it is the seventeenth glass, which it wasn’t). I felt obligated to show a complete stranger how I do a menial task because I thought it would be rude not to. Just as I began to contemplate the politics of feeling that way, this came next:
“But your hair is so nice! Do you do it yourself?”
And then one more for good measure:
“Can I touch your arms?”
It’s a rare occurrence, all of these questions posed to me within 10 minutes by the same person, in one spot. Typically I’m asked each of them on separate occasions spread out over time. If you can wrap your head around it, “Can I touch your arms?” is actually relatively common and almost never comes from children. Grown adults! Imagine!
In response I sputtered and basically said “Uhhhhhh” without blinking, until the sun came up. The real cringe-y part is that I didn’t even say no, at least not firmly. By that point in the evening I had run into some friends, one of whom was right beside me to witness the discomfiture. I never said so, but I was embarrassed.
It took me the whole trip home to shift from mildly amused to ambivalent to livid over what had happened. That’s usually the case. I can detect a person’s intentions and if I feel that they’re being innocuous and well-meaning in their curiosity -- or even their ignorance -- I let it go. I’m learning now that my proclivity toward “kindness” is doing myself and the disabled community a colossal disservice. By cheerfully accommodating a patronizing request to “pick up a wine glass,” what I’m really accommodating is the notion that disability owes inquiring minds an explanation as long as it’s asked for nicely.
It also reinforces the fallacy of what normal is and should look like. Me normal. You not. Poke poke.
The more we normalize unconventional bodies, the less fixated people will be with how they got that way. When I’m asked, “What happened?” I get the sense that what is really meant is, “Which of the bad things caused this bad thing?”
My body is not a bad thing! Nor is it anyone’s business, least of all a stranger’s in a bar.
We need to be a society that values and prioritizes difference no matter where it comes from. Thalidomide, diseases, and tragedies of course demand our attention and outrage -- but that should be because we want to prevent sickness and suffering, not because they create "defective" people. I live a full and fantastic life. I love being an amputee, it’s fun and beautiful and influencing the most exciting technology we have ever seen in the world right now.
The things that could make it better are things the able-bodied world could improve on to help me blend in as "normal" instead of stand out as "other." Perhaps starting with not asking if I’m a Thalidomide baby. Also, not making Russian nesting doll snack foods with wrappers inside wrappers inside wrappers? Baby steps.
In return I will do my part by being more honest and assertive in uncomfortable situations. I can’t say that I will snap at anyone who dares to ask me questions, because the truth is that sometimes they lead to the most meaningful discussions about disability issues.
But when they don’t, I will not stick around to be humiliated. Also I am now charging $10 for arm touches.