The Mighty Logo

When Questions About My Disability Cross Into 'I'm Not Answering That' Territory

The most helpful emails in health
Browse our free newsletters

The rims of his flat top glasses were the same shape as the gold buttons on his blazer, and I couldn’t stop staring at the spot where one was missing — probably forced from the fabric after working hard to tuck in his impressively large frame.

“Wheels, you’re over here,” he grumbled, waving a clipboard as he lined up the rest of the Hollywood Hopefuls. There were kids of all sizes and skin colors, but I was the only one who earned that nickname.

Next to me, a girl in a purple polka-dot dress was talking a mile a minute. She slowed down long enough to ask if I was nervous.

“Maybe a little,” I said nonchalantly, but inside I was lit up with nerves. This was my first television audition. I had never performed anything except the Basement Theater productions my cousin and I starred in regularly. I put on my best show – a massive hissy-fit – when my mom told me I should go to the audition and that it would be a “good experience.” My act of defiance was only a mask covering my true anxiety.

I would voluntarily clean my room and unload the dishwasher before ever admitting I wanted to be in this commercial. The open call was looking to fill a role I played well: Kid in a Wheelchair. This character they wanted was a label I wore every day, and I knew it made me different. There was no kid like me in my class or in my Girl Scout troop. I understood that sitting in a chair meant I stood out. But even then there were times I felt unseen. This chance to be in a commercial was an opportunity to be seen.

I tried to act confident as the spotlight sent blinding jabs of florescent light into my eyes.

Glasses Guy towered over me. “Demonstrate what your favorite animal sounds like,” he ordered, his voice gravelly, likely from years of stale cigarettes and bad coffee. I don’t know if I was paralyzed under the strong, relentless grip of nerves or overcome by the assault of his breath hitting my nose, but I froze. Hard. The bright room went black and I forgot everything Old McDonald taught me. Do cats bark or does a dog meow? Does a duck quack or is that a cow?

One disappointing display of animal impressions, and that was it. I went home and back to my ordinary life, but not without an entertaining anecdote from the time 10-year-old me floundered at audition for a television commercial. Everybody’s favorite ice-breaker games wouldn’t be the same without my brush with almost-but-not-quite-fame.

Now the closest I come to the lives of the the rich and famous are in the made up, albeit colorful, stories between the pages of my gossip rags, each dripping with lurid scandal. I know it’s grub, but I eat it up like the deliciously hot fodder it is. (Seriously, my living room could double as a waiting room for a dentist’s office. I freely admit a problem.) Still, as I scan the pages full of sought-after stars, I don’t have to travel far outside my own life to imagine what it feels like to dodge stranger’s stares or field ridiculous questions from curious voyeurs.

My mantra has always been: I would rather people ask me questions than make assumptions about my disability and how it has an impact on my life. I don’t often draw a line through my willingness to be open so even I get surprised when a question crosses over to “I’m Not Answering That.”

Here are my Top 5 Favorites:

“So, you dressed yourself today?” I’ve never put much thought into appropriate salad bar etiquette (until this question came at me in line for some greens). I assume I’m not alone in that unless there is a “Salad Bar for Dummies” book I don’t know about. In that case, I’m going to Amazon Prime this compelling read and hand it to the next person spending more time pondering details of my daily routine then deciding on the dietary benefits of kale or spinach.

The truth is I would rather stay in my underwear all day – clothes can be cumbersome – but since society, and HR, frowns heavily on public nudity, I must fight my urge to wear as little as possible, and get dressed – with the aid of some fancy tools – before I leave my house.

To the peeking passerby who stopped mid-sesame seed sprinkle to question my appareling abilities: It was a wicked workout at times, but I did dress myself today. And I think I look pretty damn good. Enjoy that salad!

“So, you go to work – like every single day?” Unless a marathon of “Gilmore Girls” is more appealing than a marathon of meetings (this has never happened, obviously) then yes. Yes I do.

I think most adults will admit sometimes all this responsibility is a bummer. All we really want to do is stay home, do arts and crafts and eat macaroni and cheese. (No, that’s just me?)

Harder to admit, though, is the real truth. No matter how severe the Case of the Monday’s or how much we loathe the incessant noise of our alarm (sometimes multiple) or the inevitable traffic jam, we like getting up every morning knowing we have places to be and things to do. The innate desire for your unique contributions to make an impact and to matter is the same for every person, disabled or not.

And usually with simple workplace accommodations – for me that’s some pretty sweet voice-to-text software to expedite the story interview process, and the ability to work from home a few days a week – many people with disabilities are able to hold their place in the job market.

To the older gentleman who surveyed me in my chair and asked, “But how can you do real work in that?” — I’d love to stay and chat about real vs. fake work, but I have a board meeting to attend.

“So, how do you stay so fit?” Health and fitness is important to me. Thankfully, the spaghetti noodles I call legs don’t stop me from being as active as possible and sweating out the stressors of each day.

I can lift weights with the best of them, and I am a rock star at pushups (of the chair variety). But for people whose heart rate responds only to the rush of friendly competition, there are plenty of adaptive team sports.

To the fellow fitness fanatic perusing a rack of workout clothes at Target: We both know the struggle is real. Even though I would rather eat an entire sleeve of Oreos for dinner and working out can feel like a chore, society has told us to keep it right and tight. And we listen.

“So, are you a virgin, I mean, how is sex working?” It seems this question is no longer reserved for my Ob-Gyn. I get it: Sex is fun. Sex is intriguing. And people (read: men who see an attractive woman and their minds start going, but they forget to close their mouths) will always be curious about it.

To the well-dressed and equally endowed man – judging by his ballsiness – who wanted to discuss details of my sex life while waiting to catch a bus downtown: Dude. It’s 7:45 in the morning – I don’t talk about sex until at least 8 a.m.

“So, you really think you’ll find someone to marry? Lucky for me, we live in a time when most people accept that marriage doesn’t look one particular way for one particular kind of person.

I once thought I wasn’t the “marrying type,” whatever that means. I figured I come with too much “stuff” and no guy would be willing to take my “stuff” as his own. But it’s not true. Watching my friends and family in their relationships, I’ve learned that’s all marriage is: finding one person who is so in love with you that they want to share all the “stuff” and work through it together, every day.

To Nosey Nancy who inserted herself into my future upon overhearing a retelling of my dating hits and misses: By the look of that ring on your finger, you got married. So there must be someone for everyone.

Choose Your Battles Wisely is quite applicable advice in any one of the aforementioned scenarios. In all of these small vignettes of the big picture of my life, I chose to respond with sarcasm or silence over a sour standoff. It is not cowardice, rather it is confidence in knowing I am a strong, capable woman and I do not have to prove myself to anyone. Sometimes I just laugh, shrug it off and say, “Well, it’s a show pony day!”

I am acutely aware most people mean no harm. Their ignorance is an unfortunate slip of the tongue or a misguided attempt to connect. The blatant intrusiveness into my life comes not from malicious intent, but from misunderstanding.

We are deep in the Digital Age, and as directed by the hyper-saturated culture, much of the information we receive and collect about the world around us comes from the media, often misguided itself. It’s impossible to ignore that many of the stories told about disabilities and the people living with them are punctuated with pity or soaked in sadness. The character you root for is usually a little shy and unsure of themselves. They’re sidelined until someone shows enough mercy to bring them into the fold. People living with disabilities are often painted with broad strokes from the same brush – ill equipped for life and lacking capacity to achieve any real accomplishments. If the bar of expectation is exceeded, then it’s thanks to the aid of others and not from success of their own abilities.

My perspective of the world has always been uniquely sharp, with eyes wide open to injustice and inequality – intentional or not. What 10-year-old me observed at that commercial audition – that people with disabilities are missing from the scene – remains largely true today.

Our presence is lacking and it’s challenging for people who do not live with or around disabilities to conjure up any semblance of normalcy when thinking about what disability might look like. The truth is it looks different for every person – just like life.  People with disabilities can lead full, well-rounded lives, complete with love and, yes, sex. That fact is inadequately represented, forcing people to ask embarrassingly forward questions or create their own preconceived notions about what it means to be disabled.  It’s time to redefine disability. It’s time for disability to be seen.

I want to see real people with real disabilities in real-life roles. I want to see people with disabilities commanding conference rooms and consulting fellow doctors in a hospital trauma ward. I want to see women with disabilities negotiating a deal with clients and then coming home to negotiate bedtime with a 3-year-old. I want to see people with disabilities finally find a hole in a busy schedule for dinner with their friends or date night with their love. I want to see people with disabilities living life.

Hey, Hollywood – I’m available. And ready for the red carpet. I’ve had plenty of practice saying, “I’m Not Answering That.”

Image via Thinkstock.

Originally published: August 4, 2016
Want more of The Mighty?
You can find even more stories on our Home page. There, you’ll also find thoughts and questions by our community.
Take Me Home