Nice, Disabled Girl

Nice, Disabled Girl

Shelby told her story at a Strangerville Live event hosted by The Beehive in 2019. We've included her written version below.

Like all great or terrible stories, our story begins at BYU. I don’t remember the time of year but it had been rainy and a little chilly. For that reason—and the fact that your girl snapped—I’m going to say it was towards the end of the semester. I was headed to the parking lot behind the Administration building. As you walk towards the building, there is a slight incline. Enough that most people probably don’t even notice it. I walked past a girl who definitely was noticing it though. She was wearing heels she had no business wearing and was trudging. As I went past her, she said to me “Man, I’m so jealous of you.”

For some of you reading this, the reason she said this is pretty obvious (hi, mom!) But if we’ve never had the pleasure of meeting IRL or on Twitter, here’s a little about me.

I’m a white woman with a platinum pixie cut, on the “you really should know better by now” side of 25. When I delivered this story on stage, I was wearing a blue sweater, white cords (after Labor Day because I’m rebellious) and every day, I sit on top of 300 pounds of metal framework, electronics, cushions, and solid rubber tires that costs as much as a new car.

I use a power wheelchair to get around. I always have, and despite what the essential oil people tell you, I always will.

Now people thinking I’m gaming the system by using a wheelchair is not a new concept to me. My wheelchair does make MY life easier in that without it, I would be stuck in bed. It’s a tool that gives me a lot of freedom. Ours is a complicated, albeit beneficial relationship.

But in that moment—I didn’t feel like I had a lot to be jealous of.

I was tired too. Physically, I was struggling to keep my head up because my $15,000 custom chair still didn’t support me right. My back hurt. Emotionally, I was headed back to the only apartment complex in Provo that was accessible for my specific needs. It was also far more expensive than any of the other complexes and was lovingly referred to as the “Tool Shed” by everyone else.

Normally when your grandpa or aunt made a comment like that—I would just smile and nervously laugh while changing the subject.

So it wasn’t a comment that was unfamiliar to me. But my response was.

That day, when she said to me “I’m so jealous of you,” I turned and said “Yeah, I’m pretty jealous of you too.”

Now that is nowhere NEAR the sickest burn or anything—I could have said “ok boomer”  but as I said it, her face went white and she apologized profusely.  She was shocked, and frankly so was I. Because that’s not what nice, disabled girls do.

In high school, I was voted Most Likely to Become a Motivational Speaker. Now, I deserved Best Dressed. I was robbed of Best Dressed. But Best Dressed wasn’t the superlative you gave to girls like me. No, Most Likely to Become a Motivational Speaker was far more suited for a disabled girl  like myself.

I can’t say I blamed my classmates. The only exposure they’d had to disabled people were...motivational speakers. You know the ones. The guy who was paralyzed in the football accident came to school and told you the only disability in life is a bad attitude.

Really? My chromosome number 5 would beg to differ.

I always wanted to raise my hand and say, “So if I just have a better attitude, will the school district pay for the accessible bus so I can go to Knowledge Bowl competitions with my team instead of my mom having to drive me or….?” In the words of the iconic Stella Young “Smiling at a set of stairs never turned it into a ramp”—but that’s not what nice, disabled girls did.

You sit through enough of those assemblies and very special episodes of Saved By The Bell and you get a pretty clear idea of what your role is—you as a nice, disabled girl are here to inspire.

And I was good at it. I was a literal poster child. I was a Muscular Dystrophy Association Goodwill Ambassador. This ambassadorship had far fewer accusations of quid pro quo swirling around. I went to fundraisers where Jan from your office’s HR department and the guy Buddy Garretty is based off of called in financial favors like they were running a city council campaign. I was their precocious cheerleader. They got to day drink, I got to skip school. So maybe there was some quid pro quo. Anyway, I helped raise thousands and thousands of dollars for Jerry’s Kids because that’s what nice, disabled girls do.

Nice, disabled girls let our class vote for us for Homecoming Queen and fawn over us when the newspaper showed up but then after the dance said goodbye as they went to Jake Ryan’s house, complete with those three pesky stairs up to the front door. The nice, disabled girls went home and watched Dateline with their mom. For the record, I didn’t even get voted for Homecoming Queen. But I did get nominated and ever the Millennial, I have the participation trophy to prove it. And I did watch a lot of Dateline with my mom.

Nice, disabled girls smile and laugh when someone says:

“You got a license for that thing?”

“No speeding!”

“Texting and driving is dangerous!”

“You ever thought about putting Naas, spinners, a cattle prodder, a horn on that thing?”

We don’t say “Please don’t touch me.” Instead we look around terrified for our mom to come be the bad guy when the nice man in Pikes Place Market puts his hands on our head to heal us. (Hope his faith wasn’t shaken because spoiler alert, it didn’t work)

Now I tell you all of this because one, it’s funny and two, I want you to understand the conditioning I had for 22 years was to be nice, not push back, and be happy for what you got.

So back to BYU. When I responded out of character for a nice, disabled girl, I felt bad! I knew then and I know now that she didn’t mean any harm by it, but she did hurt me. Even so, I carried around a bit of guilt for my Real World moment--when I stopped being polite and started being real.

Years after this, I found a story from Nicole Chung in The Toast—RIP. The Toast, not Nicole, she is very much alive. She tells a story about the time she didn’t call out a racist comment from a white in-law because as the only Asian person at the dinner table, she couldn’t ruin the party for everyone else. Had she said something, she would have been accused of being too sensitive, of ruining the party for everyone—and no fingers would have been pointed at the person who said the racist comment in the first place! But the party had been ruined for her. And she wanted to know why she had to keep the peace all the time? In that moment I knew in my heart of hearts this was true but had never been able to  quite put my finger on it—and all that guilt suddenly faded away.

Why did I have to be the only one who felt bad in that situation? Had I done my usual nod and laugh, I would have shouldered all this discomfort and then she would have said it again to someone else! And then that person would have shouldered the discomfort again, nodded and laughed, because that’s what nice, disabled girls do.

But what good are nice, disabled girls doing?

I believe so much in kindness—but sometimes kind isn’t nice. Kind is calling people out for the things they say that are hurtful to other people. The kindness in that moment was to the future disabled person. It was me saying “I’m going to try to make sure you don’t have to shoulder that discomfort alone. Me and this girl are going to work through this now.” Nice is nodding and laughing, keeping the peace. Both have their place.

But do we expect marginalized people to only ever be nice?  I recognize I have an immense amount of privilege and that’s part of why I can stand up here and say this. I’m white, check a lot of the Western beauty standards boxes, come from an upper middle class family with all the social and political capital that allows.

Do we only listen to hard things if they are said in a way that is palatable to us?

And if someone is speaking their truth in a way that we don’t find “nice,” are they less deserving of our support or empathy? Were we even giving them our support and empathy to begin with? Or were we just making ourselves feel better by giving them the tiara and then Sixteen Candles-ing it up just out of reach?

I hope we learn to sit in our discomfort sometimes. Growing pains don’t just stop when we’re 15 and our legs are as long as they’re going to get. We can be kind when we tell people they’ve messed up. We can help them learn. We can be humble and learn from someone when they are vulnerable and share their pain with us. Sometimes we don’t have time or energy to give a whole history of why something is offensive. Sometimes we just have to say “I’m jealous of you too,” and hope that person will think about why what they said made the nice, disabled girl be not so nice.

(Design: Josh Fowlke) (Editor: Rachel Swan)