Are Those Eye Contacts?

(TW: Passionate ravings of a disabled person, disability discrimination…?)

“…Are those eye contacts?” 

You’ve heard that question about a million times and then some. It’s easy to forget about it when you’re in a flow state behind the register. You greet the customer, you scan the items and, in between each click, you ask them if they would like to sign up for rewards but, every so often, you slip up. You have the audacity to make eye contact. 

Sometimes it’s unintentional, sometimes you feel confident, and sometimes you don’t care, but the question is eventually asked. 

Everyone always has an opinion about it. You don’t blame them. They’ve never seen it before and you’ve reconciled with that. You’re used to it. At least, that’s what you tell yourself. Deep down, you know it’s time to quit. 

 You answer truthfully:

“No.” 

Then comes the: “Really?” 

“Rieger’s. It’s called Rieger’s. R-I-E-G-E-R-S.” 

And that’s that. You don’t want to offer anything more and you tell yourself you shouldn’t care. It is what it is. 

“Oh. I’m so sorry.” 

If you weren’t behind the register, you would’ve slapped that customer. One, hard smack across their cheek.

Fuck you! You want to say. Go fuck yourself and stick that pity up your ass. 

The customer in front of you wouldn’t be able to handle a brain surgery or any other of the twenty something surgeries you’ve had. They are weak, breakable, and molded so perfectly to blend in; yet they have the gull to feel superior when compared to you. They eat crap, hardly work, and do whatever the media tells them to. They have no ability to be a leader. 

You, on the other hand, have been expected to be a leader. All because of your disability.

You’ve been told your whole life that you’re special, you’re brave, and that you can do anything. 

This essentially set you up to be the most outspoken person you know. An outspoken and a, for better or worse, person who little can relate to. 

You don’t hate yourself, you don’t hate your eyes but, lately, you hate people.

You figure being a cashier would do that to you.

Despite your racing heart and boiling blood, you shrug at the customer’s comment. 

“It’s no problem.” 

“No, really, I am so sorry.” 

“It’s all good.”

You really want to say: Says the balding bitch with fat hips. In actuality, you hold your tongue. 

A few customers later, it’s asked again.

“Are those eye contacts?” 

“No.” 

“Really?” 

Like clockwork. 

“It’s called Rieger’s. R-I-E-G-E-R-S.” 

“Oh! I know that!” 

Liar. Some people pull this stunt. They act as if they know Rieger’s, but, if they had, they wouldn’t have asked at all. 

You reply anyway: 

“You do?” 

“Yeah, my cousin has that.” 

You wonder if you should tell her that 2,000 out of 7 billion people have Rieger’s and that the likelihood of their cousin having it is slim to none. You’ve never met someone else with Rieger’s and you’ve traveled from coast to coast. Granted, you’ve met people with other rare genetic disorders, but not Rieger’s. This lady, you conclude, is trying to appear intelligent and, as a result, is moronic. You check her out without comment and hand her the receipt. 

A few customers later…

“Are those eye contacts?” 

Goddamnit. You remind yourself that you shouldn’t care. It’s fine, you tell yourself. 

“No.” 

“Really?” 

“It’s called Rieger’s. R-I-E-G-E-R-S.” 

“They’re beautiful.”

You’ve heard this one a lot. You accept the compliment politely but, deep down, you know this is said out of pity. Every disabled person with some disfigurement is called “beautiful” and, as such, this renders the compliment meaningless. Some people, you think, should shut their mouths. The compliment is also a display of superiority and comes off like the deliverer thinks you’re stupid. Hell, a disabled person could be talking about taxes and the listener would call them beautiful in response.

You recall this guy you knew who told you, bluntly, he would never date you because of your eyes. He further expressed gratitude that he had the ability to say that and that that’s how most people really feel.

Whatever. You tell yourself. Relationships are stupid anyway. Most of them end in break ups and healthy relationships are rare. You pretend you didn’t hear church bells, that you didn’t imagine yourself in a white gown, or walking down the aisle.

You blink and break eye contact. 

You need to stop caring. You vanish the fantasy. You don’t look like someone with Rieger’s. Most people with the syndrome have misshaped teeth, a larger than normal gap between their eyes, and a protruding belly due to an extra layer of skin tissue.

Somehow, you grew out of the aforementioned features and have straight, but highly sensitive teeth. You are, however, quite small; which is another symptom.

But none of your good features matter to you because the eyes are windows to the soul.

You were marked with three pupils (in general) in your right eye and a semi-triangular pupil in your left. Both of which can dilate and scare the beejesus out of anyone who witnesses. Hooray!

You remember that time you found a FaceBook group for people with rare genetic disorders, because no one in your family has Rieger’s, and how all the women there told you:

“Don’t worry, you’ll find a man who loves you some day.” 

They never considered you wouldn’t allow yourself to be that vulnerable with someone; that you would struggle to believe their kindness. That you, you know, would probably scare them.

You check out the customer and hand them their receipt. 

A few customers later: 

“Are those eye contacts?” 

“Nope.” Your tone was flat. Oops. 

“Really?” 

“It’s called Rieger’s. R-I-E-G-E-R-S.” 

You don’t have time to explain it’s actually Axenfeld-Rieger Syndrome and that the true acronym is: “ARS”. This is mostly because everyone around you called it Rieger’s growing up. It’s automatic at this point.

“Hm. A friend of mine has a daughter who once wore contacts that looked just like your eyes.” She goes on to clarify it was for Halloween.

“That’s cool.” You wonder where she’s going with this. 

“No, it wasn’t, it was absolutely disgusting.” 

Ah. So that’s where she was going with that. Well, fuck you too! You hate people, you decide again, you absolutely despise people. You don’t need friends, you don’t need a husband, you hate social media, and all of it is fucking garbage. You console yourself. At least she was honest.

You check her out and hand her the receipt. Moments later, you ask your manager if you can vape outside for five minutes. Once you’re in the smoker’s corner and the tears flow, you tell yourself three important things. 

1.     Who cares what she thinks? 

2.     You shouldn’t care. 

3.     “Nobody wants to hear how miserable you are.” 

You remember the last one well. You don’t even remember what warranted it because you were only attempting to relate. You had said:

“My parents called me special too.”

The group you were in gave you an unwarranted, unasked for pity party and one individual had said those words. You knew it was projection. It had to be. They didn’t realize that you occasionally mention your disability with the same tone you use to talk about the weather. If they don’t cry over clouds, they shouldn’t cry when you mention a surgery or two.

It still hurt though. They never apologized either; so, that ended up being one of the many insults you pretend to ignore. Whatever.

Eventually, you wipe your tears. Money is more important than emotions, you tell yourself. You spread your lips and practice your best smile.

You get up, you go back inside, and you return to your routine. Greet, scan, offer rewards, clarify the rewards are not the credit card…

A few customers later: 

“Are those eye contacts?” 

You pray that this customer will be a little nicer. 

“No.” 

“You kinda look like a Naruto character.” 

Ah, yes, the one piece of media where you have representation. Naruto. You’ve never seen it, you don’t care to watch it, and you honestly can’t tell if it’s a compliment or not. 

“It’s called Rieger’s.” 

You check out the customer and hand him his receipt. 

A few customers later: 

“Are those eye contacts?” 

“No.” 

“Really?” 

“It’s called Rieger’s…”

“Are you sure?” 

Now you have a doubter. Some conspiracy theorist who believes that, for some reason, you decided to purchase painted contacts and, for some other reason, decided to wear them at your job. Neither of which makes sense, but, apparently, rare genetic disorder doesn’t quite cut it. They squint at you, shake their head, and change the subject. 

That doubter reminds you of the time you were pulled over. You never wanted to go out, but one situation turned into the next, and then you found yourself dropping off your friend at nine at night. Unfortunately, home was three hours away.

Try as you might, Rieger’s certainly made it difficult to see where you were going and you accidentally turned into the wrong lane. 

The cops pulled you over and asked if you were under the influence. You gave them your weed, which you hadn’t smoked, and confessed you did have a drink much earlier. The cop then asked you if you had anything else, but you insisted you didn’t. 

That’s when the cop asked you:

“Then why do your eyes look like that?!” 

You couldn’t help but laugh at the question. 

This resulted in you having your vehicle searched, your eyes examined, and you performing a series of sobriety tests; which you passed because they were no different than your doctor’s. You had to spell Rieger’s every fifteen minutes as well since it was easier for a cop to believe there was a new type of drug on the market than the fact that you actually have a rare genetic disorder. 

Then the cops apologized and gave you a warning. That was certainly an interesting night. 

A few customers later: 

“Are those eye contacts?” 

“No.” 

“Really?” 

“Mmhmm.” 

“That’s highly fascinating. I work as a nurse a few blocks down the road and, I gotta say, I’ve only worked with one person with Rieger’s.” 

Huh. That’s the second time you’ve met a medical practitioner that knows about Rieger’s. They’re learning. However, something catches your attention. She called it “Rieger’s” and not “Axenfeld-Rieger Syndrome.”

You hope she was honest and that maybe some day doctors will know that people with Rieger’s can have true polycoria. They don’t all have pseudo polycoria.

You being one of those people. At least, you’re ninety percent sure it’s true polycoria considering how your pupils function. Generally, you have three pupils in your right eye but, sometimes, they can merge into two gigantic pupils and, other times, split into six smaller ones. These transformations accompany a dull throb followed by a sharpness through your eye muscles. All these sensations then come together to impact your vision instantaneously. So much so, in fact, that, some days, you need your glasses and, some days, your prescription is too blurry. You haven’t been able to confirm it though because you don’t have health insurance.

Thanks, America. You smirk and put the items in a bag.

You hand the nurse her receipt and wish her well. 

A few customers later:

A mother walks up to your register. She’s accompanied by a child with shaky arms. The mother tells you he has Tourette’s, but that it’s no big deal, and not to care about it. You ask her if she knows about YouTubers with Tourette’s and other resources, but she shrugs it off. She doesn’t care. You ring up her items, one of them being a toy, and kneel to reach her child’s level.

“You’re a strong kid.”

You hand him the toy. He relaxes and smiles back. You know how much strength that kid will need growing up and wonder if, maybe, you should help a daycare with disabled kids. You hand the mother her receipt.

A few customers later: 

A customer makes eye contact with you, but says nothing. They raise their eyebrows and tilt their head. This customer is an immigrant who doesn’t speak English and that makes it all the stranger. They grab their items and go to a different cashier; mumbling something in Spanish as they leave.

You check out the next customer without comment. 

A few customers later: 

Another immigrant stares at you but then they laugh. They turn to their companion and speak in Spanish while pointing at you. Bitch. 

You check them out and hand them their receipt. They roll their eyes as they leave. 

Your manager walks over to you and introduces you to a new co-worker. You’re told you’re the one who’ll train her today and you agree to do so with no trouble. As you begin, you accidentally make eye contact in close proximity.

The redhead says nothing, but her demeanor shifts in that instant. She’s younger than you, around eighteen years old. You help her out with her questions, but she makes an occasional snarky comment under her breath. You can’t quite catch what she’s saying as hearing loss is another symptom of Rieger’s.

Once you feel like she’s got the basics down, you go back to your routine. At one point, you go the bathroom and you find the new girl in there. She giggles.

Whatever. Maybe it’s about you, maybe it’s not, but you’ve been hardwired to think that it might just be and you can’t help but wonder.

You remind yourself you SHOULDN’T CARE! You head back to your register. The new girl returns and stares at you. Every time you turn to meet her gaze, she turns away. When you look away, you catch her staring again and, now, as she’s staring, she’s typing on her phone. 

You have no idea who’s she talking to or what about, but she’s staring at you and now you wonder if she’s mentioning your eyes on any number of social media apps. You’ve done nothing to warrant this poker faced, ice cold stare, but you’re feeling the hairs raise off your arms. 

You’re being paranoid.

Are you really though? 

It’s not about you. 

It certainly feels like it is. 

She looks at you for at least an hour until you quietly ask your manager if you could talk to them outside. When you attempt to explain what’s going on, you say:

“I don’t know what exactly could be so noticeable about me.” 

This was sarcastic, but it seems as though your manager doesn’t get the hint. She already knows Rieger’s; so, you had hoped she understood, but most people who know you stop thinking about it after awhile. They even claim that they don’t notice and, therefore, it’s no big deal. Ha.

You don’t have the energy to point out what you meant.

When you finally clock out, you wipe another tear.

Why are you crying? Why do you care what she thinks? 

The truth is, it’s not just her and it’s not just those customers. 

It’s everyone outside of your family that you had ever interacted with in person. You’ve been labeled a demon, a crook, weird, beautiful, badass, strange, off putting, unique, and plenty of other labels too. You know it’s your duty to tell people about Rieger’s, but you also know you hate every single moment of it. You wish, desperately wish, that one day you won’t have to do that anymore. That enough people will know.

You remember you read this article about a little girl with Rieger’s and how much you hated it because you knew that little girl—like you—had hundreds and hundreds of people telling her their opinion on her disability. She was around six. Six!

It’s wrong. Completely wrong. People need to learn how to shut their mouths and keep their opinion, whether well intentioned or not, to themselves.

You tell yourself one last time that you shouldn’t care, but you can’t help it. You do care. Somehow, you’re not jaded enough, you’re not cynical enough, you’re not pissed enough to ignore that repetitive question you get and you still care what people think. You also know you could just stop answering those questions, but, if you stop, then that’s one less person who knows about Rieger’s. You feel it’s your cross to bare.

Maybe you’ll fit in one day, but you can’t fit in now and you can’t work in retail much longer either.

The following day, you still can’t hold back the tears. No amount of logic or reasoning works anymore and you chide yourself for allowing that redhead to get the better of you. And yet…and yet…

You’ve had it with people whining about how they don’t have enough representation when that’s not even on the table for people with Rieger’s.

You know it’s a bitter thought, you know you’re probably going to tick someone off, but you can’t take it anymore. You want to scream and hope that somebody hears you.

You decide that this is it. You’re going to quit when you can and you’re going to get a job that doesn’t involve interacting with other people. 

You hate people now. All of them. It doesn’t matter where they stand politically or what gender or orientation they possess. You simply hate them. You especially hate how selective people are over which issues and which discrimination they care about. It’s hypocritical; which is much worse to you than blatant ableism.

Maybe you can find that job you thought of earlier. You want to be the person you needed when you were a kid and that would be much better, you decide, than being a cashier.