opinion

Voice column: Have you heard of Kabuki Syndrome?

by Daniella Gross

While my mom was on a walk to the grocery store with my brother, a woman stopped abruptly in front of my brother's wheelchair, staring into his eyes with confusion and disgust. In the awkward silence my mom asked, “Isn’t he beautiful?” to which the woman responded “No, he’s ugly.” The lack of empathy in society sometimes gets to me.

When I walk in public with my brother, all eyes are on him. People don’t know how to act when they see a teen the size of a toddler in a wheelchair making loud grunting noises or happy squeals. They don’t know that staring at him profusely makes us uncomfortable. Being low profle with him in public is almost impossible.

Growing up beside my 12-year-old brother Niko has never been easy. Niko sufers from a rare disorder called Kabuki Syndrome. If you haven’t heard of it, I’m not the least bit surprised.

Kabuki Syndrome is an extremely uncommon disease, with only one in 32,000 children diagnosed in a general population and is often defned by the unique facial features that Kabuki kids are born with, which resemble the makeup that traditional Japanese Kabuki Theater performers wear.

My brother, being that rare one child in 32,000, was diagnosed with Kabuki three years after his birth.

Niko has a variety of symptoms, the most prominent being an aortic valve dysfunction, dysautonomia, neurological dysfunctions, neurostorming and being non-ambulatory and nonverbal. The list goes on and gets added to constantly.

But when others see people like my brother, they are always quick to judge, or are empathetic in all the wrong ways. They either don’t see that despite the pain he sufers from, he is always happy, or they don’t treat him like a normal human being, confning him to his limitations instead of seeing his potential.

At school, I constantly cringe when someone calls a peer a cripple or retarded. People don’t fnd it ofensive and think it’s just a hilarious way to make fun of their friends. They don’t understand it’s a derogatory term used against the disabled community, directly insulting those who need extra help physically or mentally.

As the sibling of a special needs child, it can be challenging. I often internalize the struggles I face at home with Niko, as not many of my friends are able to relate to my situation. When my parents are busy, I change my brother's diapers, dress him, do his laundry, feed him, give him medications, brush his teeth and take him on walks. I help as much as I can because he isn’t able to do simple tasks.

For all my responsibilities, though, the most mentally challenging thing about being a sibling to Niko is having to watch him in pain. His neuro storms— [A hyperactive response of the sympathetic nervous system, in most cases caused by TBI]—are painful and last a week, occurring every two weeks.

This is why it pains me when instead of treating him with curiosity and inclusion, people treat him with disdain and disgust. To me, my brother is perfect in every way; he’s all I know.

Niko likes ice cream and pizza, but hates vegetables. He likes peaceful walks in his wheelchair and enjoys music. When I sing him to sleep or tuck him in, he shows his love by giving me the biggest hug anyone could ever imagine. At the end of the day, he is just like you and me. If people could see what I see instead of assuming and judging by how he looks, they would see a beautiful boy.

Likeit or

by Elise Haulund

Business Review describes using fller words as a way to “hold the conversational foor” while one is thinking, so if non-male individuals are more likely to be interrupted, reducing pauses in their speech is a defense mechanism against losing speaking time. It is harmful but far too common to associate stereotypically feminine traits—spending more time on one’s appearance, enjoying shopping for clothes, watching romantic TV shows and yes, It’s using “Valley Speak”—with a lack of intelligence. Not to mention, those speaking like, so annoy- English as a second language may use ing when linguis- “like” more often to gather their thoughts tic purists impose in a language they’re less familiar with. their prescriptive gram- Following prescriptive linguistics “almost mar dogma on the speech pat- always has an aspect of social gatekeeping,” terns of the masses. Cuz like, language is according to the University of Pennsylvaa constantly adapting and ever-changing nia, in that “arbitrary features of language construct we use to describe our unique are used to block social advancement.” experiences, and like, why do we listen to Weaponizing someone else’s use of “like” those elitist academics when they tell us is simply a contrived way to demean them, how to speak? Gag me with a spoon! and it’s no coincidence that this is done

It’s hard to go a day without hearing so often against women and non-native “like” sprinkled throughout speech. De- speakers. spite its ubiquity, the improper “like” is It is true that academic or professional widely considered to weaken someone’s writing and even speaking warrant more credibility, making them sound unsmart formality than “like” suggests, but acting or unassertive. The reality, though, is that like it reduces the elegance of “like” shouldn’t be viewed that way; fller the English language words certainly do suggest a lack of conf- is not only predence in what one is saying, but to construe tentious “like,” as it exists in today’s lexicon, as b u t fller per se is false.

Traditionally, “like” means to fnd something attractive or be similar to something. The slang-usage of “like” has other functions: quotative (“I was like, ‘____’”), fller, hedge (to indicate ambiguity), cushioning and as a discourse particle (to emphasize). “Like” has become its own complex pillar of today’s grammar.

If inserting “like” into a sentence really is just the hesitation of an unsure speaker. It wouldn’t afect the meaning. And yet, it does. “They have 20 billion dollars” is diferent from “They have, like, 20 billion dollars,” because it indicates the ambi- downguity, approximation and/or hyperbole of right inacthe statement. “Like” is a modal marker—a curate. grammatical cue that indicates degrees of New generations reality or truth. can’t help but challenge the

Prescriptive linguistics refers to the rules status quo; it’s the natural course for how language should be used according of things. ‘Kids these days’ will alto the most pretentious folks in academia ways create their own distinctive (as opposed to descriptive linguistics—how ways to move through the world. language is actually used). So, following Language plays a central and vital the prescriptive agenda would lead one to role in the human experience and scof at the thus is not spared from generational perva - changes. sion In the 1600s, “thou” was the standard, but today seldom does a modern person address another as “thou.” According to the University of Pennsylvania, “Generation by generation, pronunciations evolve, new words are borrowed or invented, the meaning of old words drifts and morphology develops or decays.” New language is nothing new. The way “like” has been transformed to encompass so many meanings and nuances is not a disaster; it’s evolutionary linguistics happening in our own lives. Attempting to stymie the inevitable changes in language is futile and foolish. The constant evolution of language is in o f fact one of its most unique beauties, not a “like” herald of its downfall. throughout So like, let’s embrace it. twenty-frst century English, for it is ILLUSTRATION BY LOLA DIEHL

Not "Like" as a fller word is a testament to the constant evolution of language, instead of a downfall of lazy speakers not within the canonical rules of English. Today’s informal use of “like” frst emerged with the Beatniks, a 1950s counterculture movement, but it was popularized in the 1980s with the Valley girl stereotype. In 1982, Frank Zappa produced the song “Valley Girl” with his daughter, Moon Zappa, poking fun at the materialistic, young, upper-class, White women of the San Fernando Valley. In the song, Moon satirically blabs about, “like, the Galleria, and like, all these really great shoe stores.” Even though the mocking of “like” was frst directed toward the wealthy women of Southern California, it is inherently problematic to ascribe intelligence level to any language pattern. With “like,” the efect of that can lean into misogyny. An online article published by "The Atlantic" called “Actually, Literally, What Your Crutch Word Says About You,” ascribes saying “like” to meaning that “you The constant evolution are a teenaged girl who smacks her gum of language is in fact a lot while talking and, like, OMG, can you believe you said that?” Although one of its most unique most can’t avoid at least the occasional beauties, not a herald “like,” the poster-child of apparently dumb “like”-sayers is undoubtedly a of its downfall. teen girl. Why is this word, which many associate with being a superfcial airhead, attached to teen girls so often? ELISE HAULUND One of the most common usages of SENIOR “like” is as a fller word, which may explain why the reigning image of those who say “like” is female. Research by Northwestern University has found that in professional and personal conversations, women are interrupted more than men. The Harvard