Medius Ocris

[…] talent isn’t genius, and no amount of energy can make it so. I want to be great, or nothing. I don’t want to be a common-place dauber, so I don’t intend to try any more.

Amy March, Little Women by Louisa May Alcott

It wasn’t meant to be a trap. I thought the answer would be a simple, “Yeah, of course!” He’s my husband. If you marry any type of artist, isn’t being a fan of your partner’s art a prerequisite to marriage? Turns out, it’s not. It also turns out, I’m not okay with that.

This is how our conversation on Sunday unfolded:

“Do you think I’m talented?” I ask Eliot.

Eliot stares at me blankly for a couple seconds before he answers, “In what way?”

I’m taken aback. “What do you mean?” I say, “In general.”

Eliot takes a few seconds to think about this. I’m already annoyed before he says, “I think you’re hard-working and ambitious.”

So, not talented. Does he think I’m not good at anything? 

“Okay” is all I can get myself to say.

Eliot continues, trying to save himself he says, “I don’t think I know many talented people. Except maybe (insert your guess here).” 

“Uh-huh.” I don’t want to talk about it anymore, but he keeps going.

“I think talent is something you’re born with.” He’s flailing in a pool of his wrong answers.

“Okay, thanks,” I say and laugh to make it seem like I’m not hurt by his answer. I try to convince myself I’m okay with it, too. I mean, I get it. His definition of talent is different than mine. I guess I was just thinking of talent as some skill at something – anything. I suppose that’s a very soft definition. According to Merriam-Webster, the definitions are: 1. the natural endowments of a person, and 2. a special often creative or artistic aptitude. When Eliot thinks of a talented individual, he thinks of geniuses who win awards or people whose abilities always impress him. He thinks of Conan O’Brien, Michael Jordan, and Sufjan Stevens. I’m not a professional anything, but I guess I believed I still impressed him. At least, sometimes.

I put the conversation behind me and forget about it until the next evening when I ask him for feedback on a draft of my previous blog post. I watch his face as he reads in silence. He tells me he doesn’t like a phrase or word, I agree, make a mark on the page, and continue to watch him read. I carefully study his mouth for smirks or smiles. Nothing. I feel the curse of mediocrity twisting in my chest. Eliot finishes reading and says with a smile, “I think it flowed well in the second half! I liked it.”

“Mmmk,” I say, unconvinced that he actually likes it. I know he’s making up for admitting yesterday he didn’t think I was talented.

After a pause, I say, “You’re not impressed by my writing.”

“I admit I haven’t been blown away yet by your recent writing.”

The curse of mediocrity twists harder in my chest as my throat swells up, and tears fill my eyes. I lie on my stomach on the floor and bury my head in my elbow. I think about writer Michelle McNamara and how her husband Patton Oswalt would gush about how smart she is and how talented she is during his stand up. 

“I want you to be a fan of my writing. I want you to want to read it, but you only read it because you have to because you’re married to me.”

“Elise, don’t you think I’m trying to be honest to—”

I cut him off, “Yeah, I know you’re being honest. That’s why it’s sobering; I’m wasting my time dreaming about a career as a writer. I’m never going to be great.”

“Elise, don’t you think you’re going to get better if you keep writing?”

“I’ll keep writing, but only like for my blog.”

“What about your memoir?”

“I’m not doing that.”

I get up to get a tissue, my nose is stuffed up now from sobbing into my arm. I change the subject and ask Eliot if he knows where we put the Sudafed.

I’ve been thinking about why mediocrity bothers me so much. Why do I have to be unique? Part of it is because I’m an Enneagram 4: The Individualist whose basic fear is that they do not have an identity or personal significance. But are we born with our Enneagram types, or are our types shaped by our experiences?

It occurred to me the other day that I have been treated as if I was special growing up, especially by my elementary school teachers before I started hiding my hand in fifth grade. Teachers were impressed with me because I could keep up with my classmates, even with my limb difference. I could participate in gym class, even during the gymnastics unit when we had to climb ropes or flip on the uneven bars. In computer class I was able to type faster than some classmates. At times I did feel favored; teachers wanted to make sure I wasn’t left behind. I’m definitely thankful for their care and attention. But maybe little Elise perceived my teachers’ careful regard for me as love unrelated to my hand. Because at the time, I didn’t think of my limb difference as limiting; I simply thought of it as different.

As a kid I wasn’t comfortable with the disability label because I felt more able-bodied than other people with disabilities. The first time I became conscious of this dissonance was when a man with no legs came to speak at my junior high. I don’t remember his name; I don’t remember anything about him other than his lack of legs. What was his message? Why was he speaking to 300 kids from atop the auditorium stage? I think his main message was that he can do anything an able-bodied person can do. He started the presentation wearing his prosthetic legs. A few minutes into his presentation, he detached his legs to walk up and down the stage on his hands. He showed us a device that allowed him to drive his car with his hands. He told us to stop using the word handicapped and use the phrase “differently-abled” instead. I hate that phrase. It’s trying too hard to be positive. Just say disabled.

I didn’t think about it as a sixth-grader, but now I wonder what qualified this man to give a motivational speech? Was his goal to be Inspiration Porn? To show us that even he, a man with no legs, can live a happy life? I don’t know. But I bet my right hand that every kid in that auditorium walked out feeling inspired, thinking, “Wow, if a man with no legs can be happy living life, I can too.” I walked out of there thinking, at least I have my legs.

I’m not happy with myself for thinking that. But that is the purpose of Inspiration Porn. And even people with disabilities buy into it. I bought into it, and maybe even The Man-With-No-Legs bought into it. That’s why he was okay objectifying himself to inspire 299 able-bodied kids and me.

Before fifth grade, I thought I was special because teachers treated me with extra care they must see something in me. After fifth grade, I felt I had to be special because people with disabilities have to be inspirational. Now I don’t want to be inspirational because of my hand. I don’t only want to be remembered for having a limb difference the way I remember the Man-With-No-Legs.

In fifth grade, I was at the Glenview Ice Rink sitting on the floor, tying my ice skates when I heard my name. I looked up and saw Brandon and Patrick, two boys who were in Ms. Dresner’s first-grade class with me. Brandon repeated, “Elise?” and Patrick said, “You know, the Girl-With-One-Hand.” I turned my face away, hurried to tie my laces, and went into the skating rink before they could see me. It occurred to me then that many people at school probably refer to me as The Girl-With-One-Hand. Maybe even today, that’s how people identify me. I don’t think it’s unfair, especially because I’m likely the only Elise you know with one hand. It’s a fact, yet, I feel… shame? I’m not quite sure what it is. A sadness, maybe.

I want to be known for more than my hand. I want a different identifier: a talent that makes me unique and respected. I’m terrified of mediocrity because, to me, mediocrity equals failure.

Did you know that the word mediocre is make up of the Latin words medius, meaning “half” and ocris, meaning “rugged mountain”? A mediocre person could only make it halfway up the mountain, or as The American Heritage Dictionary describes it: “halfway to the highest point of excellence.” In other words: a failure! I don’t want to be a clunker, a dud, a loser who was only ever identified for having one hand, and being an “inspiration” just because I lived an ordinary life with one hand. 

Stella Young once received a Community Achievement Award at 15 years old, even though, as her parents so lovingly put it, “She [hadn’t] actually achieved anything.” As she notes in her Ted Talk, Stella hadn’t done anything that would be considered an achievement for anyone without a disability. She was given the award because she was living an ordinary life in out-of-ordinary circumstances. It’s condescending to receive an award this way; I would not want it.

By the end of her life, though, Stella did deserve a Community Achievement Award for her journalism and disability rights activism. Ironically, her Ted Talk, “I’m Not Your Inspiration,” inspired me, and I wish I could thank her in person. Stella did not live a mediocre life.

My eyes glazed over every time I tried to start writing today. My body turned to jello, and I slipped off my chair onto the floor. I keep thinking, what’s the point if it’s going to be mediocre? I hate the idea of writing a mediocre post about mediocrity. How embarrassing.

Do posts always have to be tied up nicely with a red bow? My body won’t let me move on until I come up with a positive note to end on. So here’s my attempt:

Keep writing even if you think it’s mediocre, because it’s healing. Write because it’s the only way you know how to process your feelings and organize your messy thoughts. Write because, if you’re honest and vulnerable, you connect with a deeper part of yourself and sometimes with other people. And sometimes, they share their stories, and you’re reminded you’re not alone; you’re reminded of God’s love for people and hopefully, even yourself. Write because you want you, because you enjoy it, because it’s what you’ve wanted to do since you were five years old. Write for five-year-old-Elise. For 10-year-old-Elise – 16, 20, 80. Just write, Elise. You won’t regret it. 

Tired of Living in the Wrong World

I was not wrong for the world I live in. The world I live in was not yet right for me.

Stella Young, disability rights activist born with osteogenesis imperfecta.

At Thanksgiving dinner a year after Eliot and I started dating, I overheard Grandma ask my cousin Michael, “Aren’t you so happy Elise is dating?” Michael laughed awkwardly and agreed that, yes, it was great that I was dating. Grandma then said she never believed it would happen. I wondered if he knew why she would doubt I would ever date. I knew right away.

Grandma used to stroke my left hand and say, “Aigoo, so sad. Why were you born this way?” Each time she would do this, I’d laugh it off and reassure her: “Grandma, it’s okay. I’m fine.” What I said didn’t matter, though. In her eyes, it wasn’t fine. I was born wrong, and she was sure no one would want to marry me.

When Grandma heard I was dating, she was delighted. The first time she met Eliot, she grabbed both his hands and thanked him for dating me. I’m sure she never thanked my brother-in-law for dating my sister or any of my cousin’s significant others for dating my cousins. She wouldn’t have; she never had to worry if they’d find partners. They’re all able-bodied. 

This is the ableist mentality I grew up around. It’s the ableist attitude I have to check myself for every day. 

When Eliot told me he liked me, I was afraid he liked me because he didn’t know about my hand. I was afraid he’d run away once he found out. When people tell me they’re happy for me and they think Eliot is a great guy, I have to fight the thought that they’re really saying, “Wow, good for you! You found a guy who is actually willing to be with a disabled person. Congratulations! You found love despite your disability. I’m so happy for you. If you can find love, anyone can.” 

The thing is, I bet some people have thought this. I wouldn’t be surprised because we all live in an ableist society.

I’d like to pause here and give a few definitions of ableism, in case you don’t know what it is:

  1. The discrimination in favor of able-bodied people;
  2. A set of beliefs or practices that devalue and discriminate against people with physical, intellectual, or psychiatric disabilities and often rests on the assumption that disabled people need to be ‘fixed’ in one form or the other;
  3. Discrimination against people who are not able-bodied, or an assumption that it is necessary to cater only for able-bodied people. 

It’s only been a few years since I learned this term. I first heard it in 2014, around the same time I first watched Stella Young’s Ted Talk, “I’m Not Your Inspiration, Thank You Very Much.” If you have a chance, please watch it. It’s only nine minutes long and worth every second.

Stella Young was an Australian comedian, writer, journalist, and disability rights activist. In 2014 a brain aneurysm killed her at age 32. Stella subscribed to the Social Model of Disability. This model says it’s our society that disables us more than our bodies and our diagnoses. I had never thought about my limb difference in this way. When I heard this, something shifted. I hope I get to meet Stella in Heaven and tell her how she changed my life.

Before I watched Stella Young’s Ted Talk, my ideal world was one where I was born with two hands. That’s it. If I had two hands, everything else would fall into place. Life would be so easy and I would be happy. 

I suppose this mentality came from similar messaging my entire life from adults, whom I believed knew better than me. One such adult was my private voice teacher. I should have known better than to listen to a lady who once shoved a pen between my teeth to pry my lips apart and kept it in my mouth so I would sing with my mouth opened wider. But I was only eight years old and I trusted adults were doing things for my best interest. 

During one lesson, we were singing a Korean folk song about Heaven. In order to help me sing with more feeling, she explained the lyrics to me. The song, she said, described Heaven as a place with no sorrow and only joy. “In Heaven, you won’t have that hand.” She said as she pointed to my left hand. “You will have two hands. And you won’t be sad.”

I wasn’t sad until I realized she was saying I should be sad. I was born wrong. It was one of the first times I felt shame about my hand. The following year when I moved to a new town and a new school where no one knew about my hand, I started hiding it. And I would hide it until I was 26 years old – the age I was when I discovered Stella Young’s Ted Talk.

After I heard Stella’s Talk and read her letter to her 80-year-old self – the quote at the top of this post was pulled from this letter – I began to imagine a different ideal world. A world where I have my left limb difference, but the world around me is set up to help people like me. A world where my health insurance provider doesn’t reject my application for a prosthetic because I have a “cosmetic issue,” but anyone in need of a prosthetic has free access to one. A world where every book is available in braille at any book store. A world where movie theaters have a hearing-impaired option with closed captioning for each film. A world where there’s more disability representation in the media, disabilities are normalized, and people with disabilities are not used as Inspiration Porn.

Inspiration Porn, as Stella defines it, is “objectifying disabled people for the benefit of non-disabled people.” In her Ted Talk, she addresses photos like these:

“The purpose of these images is to inspire you, to motivate you so that we can look at them and think, ‘Well, however bad my life is, it could be worse. I could be that person.’”

Stella Young

At the beginning of her Ted Talk, Stella tells a story of her first day teaching at a high school. Twenty minutes into her lesson, one of the students asked when Stella would be giving the motivational speech. “You know, when people in wheelchairs come to school, they usually say, like, inspirational stuff?” Basically, he proved that people with disabilities are only seen as objects of inspiration for able-bodied people.

I once spoke at a friend’s eighth-grade science class about my limb difference. I was there to talk about amniotic band syndrome and how I physically navigate the world with my limb difference. After my presentation, I opened the room to questions and one student asked, “Where do you get your confidence from?”

What a sad question. This student could not fathom a person with a disability could just be confident. (Although, I’m glad I came off as confident. I am NOT.) But would she have wondered where any other guest speaker found their confidence? Say, a doctor who came to talk about amniotic band syndrome? No. It was my limb difference that prompted her to wonder. I’m sure she wanted an inspirational answer. If a person with one hand can have confidence, anyone can. I don’t remember my answer, but I’m sure it wasn’t inspirational. Probably something like, “I work at it, kid, like everyone else.”

I turn 32 next month, the same age Stella was when she passed. I hope I can honor her in my little life by fighting ableism, inside and outside myself. I still have days where I wish I could pray before bed and miraculously wake up with two hands. (But to be honest, I’d be totally freaked out.) I still have to fight the thought that I was born wrong; because while I might have been born different than most, on good days, I believe I was created this way for a reason. I hate to be cheesy, but there it is. 

If I had two hands, I might be comfortable enough in my own body that I wouldn’t consider marginalized groups of people as readily. My limb difference forces me to imagine a better world, to love wider and hopefully greater. It helps me dream up what God’s Kingdom can look like here on Earth, now. After all, some things that seemed impossible have already happened: I got married, I came out about my hand, and I’ve escaped ableist brainwashing. That’s a pretty good start. Small steps. Keep going.

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If you want to learn more about limb differences and ableism, I’ve been following these organizations that have been helping me normalize disability in my own life and become more comfortable talking about my limb difference: