Like I’m Normal: My Weird Disabled Life

Courtesy of Stockton University.

by Daisy Jasmine, Staff Writer

When I was in junior high school, I—with ample help from my mother—drafted a long introductory letter explaining the details of my hearing loss, and the scale and scope of the accommodations I would need. During the first week of each semester, I would deliver this document to each new teacher after class time. I was a shy tween, and this was my way of self-advocating. Needless to say, reactions were mixed.

…And the other way. Courtesy of LA East Side
One way teachers react to disabled students…Courtesy of Leading with Trust

A US Politics teacher who had scoffed and muttered when I asked her to repeat herself during class quickly changed her tune and became one of my favorite teachers. My Geography teacher must have crumpled it up and binned it as soon as my back was turned, judging by the time I was narrowly saved from failing the final project by a friend who called me to relay specific instructions which had not been written down in any form, leaving me to redo the entire project. And especially notably, a Physics teacher decided the appropriate course of action would be to publicly introduce me to the class and loudly declare me as hearing impaired. (It would be years before I would embrace the term “deaf.”) Following his announcement, the girl in the seat in front of me turned around, and I swear we must have had a brush with a black hole, because time seemed to go at ¼ speed for her as she droned, “Hiiiiiiiiii Daiiiiisssyyyyyyyyyyyy, hoooooowwwwwww aaaaaarrreeeeeee yoouuuuuuuuuuuuuuuuuu?”

After that blip in the space-time continuum, I went home feeling alarmed and alienated. On my mother’s advice, I filed away an appropriate comeback in case that ever happened again: “You can treat me like I’m normal, but thanks for saying hi.”

Over the years this phrase has become something of a running theme for me, despite never being put to use. Being treated like I’m not normal is an experience that I know well—as do so many other disabled people around the world. Far too often, the discovery of someone’s disability is enough to make any social interaction awkward at the least, and at times even hostile. My junior high experience would eventually include an English teacher interrupting a spelling test to loom over me with daggers in her eyes for a solid five minutes just to punish me for asking her to stand where I could see her. At my high school graduation, my classmates were all baffled when I was plunked in the front row by the administration, throwing the alphabetical walking order into disarray, as though Rue (my last name) started with an A.

The apparent anomaly of my disability only came further to the forefront of my experiences during my undergraduate. A blind date for a sorority social who had just seemed somewhat standoffish at first turned out to be spoken for and attending the social with me out of some sort of pity, as I learned when I saw him quietly texting his girlfriend “don’t worry, she’s deaf.” The same sorority saw multiple recruitment heads sequester me away to “behind the scenes” work during rush week, along with the other girls unfortunate enough to be labelled insufficiently feminine and norm-abiding, to spare the potential new sisters the awkwardness of interacting with a disabled person which could apparently drive them away from our chapter.

At the same time, the conflict caused by my disability in academics reached a low point. The professor of an online course outright refused to provide captions for her voice-overs containing material found nowhere else, forcing me to finally register with the Disability Resource Center. This, of course, required me to seek out an audiologist to get an up-to-date chart, kicking a chain of events into gear like a mouse with a cookie. The audiologist’s visit wound up doing more harm than good, as the doctor drove my mother and I to tears with her brusque commentary, including gems such as “you shouldn’t have even graduated high school” and “you’re not fooling anyone.” I would then receive pamphlets in the mail from that doctor’s office for years, which described hearing loss as a “horrible disease.” I took endless pleasure in ripping these pamphlets into confetti.

Marlee Matlin, Deaf icon, making a point on Switched at Birth. Courtesy of The Inquisitr

It’s unfortunate but undeniable how often people who otherwise pride themselves on social awareness, inclusivity and open-mindedness are more willing to accept the stereotypes spread by the media about disabled people as gospel than listen to the experiences of those living it. And this confusing dissonance is rampant. I once attended an intersectional feminist conference where the well-known keynote speaker played a YouTube video with no captions, insisting to me that I’d be fine if she turned it up. I’ve been told I’m exaggerating my hearing loss, that I’m in denial about the drastic nature of it, that all I need is to listen harder, or that I choose what I want to hear. Total strangers have approached me with their hands flying when I didn’t know a single word of sign language. I was recommended the deaf-focused teen drama Switched at Birth so many times that I spitefully avoided it for years, even though it is actually a very good show.

The Speech Banana. Courtesy of Audicus.

For as long as I’ve been a self-advocate, I’ve struggled with the seemingly endless task of explaining my experience in a way that gets through to people who have never been through anything similar. My explanations seem to need new addendums and errata every day, and then I have the secondary task of making it clear that my particular disability is Weird even amongst other deaf people. My hearing loss is categorized as “mild to profound,” which is about as vague as you can get. My audiogram—the chart detailing how much I can or can’t hear—looks more like a double-black-diamond ski slope than the common gradually declining curve, and excludes a great deal of the sounds falling within what is known in audiological circles as the “speech banana.” While my lipreading skills are stronger than most, the fact remains that only 30% of the English language can be read on the lips. Besides this, my auditory processing is also utterly shot—an experience best described as dyslexia of the ears. Without context, speech sounds like uncannily like Charlie Brown’s teachers. This is no coincidence—Charles Schulz himself had an auditory processing disorder.

Despite my best efforts to explain my experience as a disabled person, I’ve become familiar with conflicts arising from people refusing to accept that the disabled experience is more complex than the media leads us to believe. Much like topics such as sexuality and gender, disability is one of those things incorrectly assumed to be a binary—a light switch flipping between abled and disabled, deaf and hearing, sighted and blind, ambulatory and wheelchair-using. Even other disabled people make this mistake, especially in the highly proud Deaf communities where mainstreaming a deaf child or raising them to speak English is considered child abuse. I’ve been ostracized from social groups, left in the dust in classes, and talked about behind my back by people believing me to be “making excuses” or “playing the deaf card.” I have been screamed at, had my voice mocked by strangers, and been treated as a joke by coworkers who never got sick of sneaking up on me and scaring me since I couldn’t hear them coming. A lack of understanding can cause so much pain.  Even without a deep understanding of other people’s experiences, nobody wants to be treated like they’re somehow “abnormal.”

There’s no such thing as normal. Courtesy of Encyclopedia SpongeBobia

But here’s the thing. I’m not normal—and neither are you. Thunderbirds are certainly no stranger to being “misfits,” and normalcy is unattainable. Weird is what’s real. We all have our unique experiences and struggles that could never be fully explained in a ten-minute conversation or a single article. So with that cleared up, let’s cast aside the idea of treating each other like we’re normal and focus on treating each other with kindness instead. If someone’s experience is alien to ours, we should always remember to take the time to say hi.

 

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