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. Whenever I tried to start, 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.

///

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:

“I’m Not Your Inspiration”

I came across Stella Young’s Ted Talk above a few years ago after her death in 2014. I’m so grateful for her work. Her Ted Talk changed my thinking about my limb difference, and I come back to it once in a while as a reminder that I was not born wrong — it’s society that needs correcting.

Below is a transcript of her Ted Talk.

Transcript:

I grew up in a very small country town in Victoria. I had a very normal, low-key kind of upbringing. I went to school, I hung out with my friends, I fought with my younger sisters. It was all very normal. And when I was 15, a member of my local community approached my parents and wanted to nominate me for a community achievement award. And my parents said, “Hm, that’s really nice, but there’s kind of one glaring problem with that. She hasn’t actually achieved anything.” (Laughter) 

And they were right, you know. I went to school, I got good marks, I had a very low-key after school job in my mum’s hairdressing salon, and I spent a lot of time watching “Buffy the Vampire Slayer” and “Dawson’s Creek.” Yeah, I know. What a contradiction. But they were right, you know. I wasn’t doing anything that was out of the ordinary at all. I wasn’t doing anything that could be considered an achievement if you took disability out of the equation. Years later, I was on my second teaching round in a Melbourne high school, and I was about 20 minutes into a year 11 legal studies class when this boy put up his hand and said, “Hey miss, when are you going to start doing your speech?” And I said, “What speech?” You know, I’d been talking them about defamation law for a good 20 minutes. And he said, “You know, like, your motivational speaking. You know, when people in wheelchairs come to school, they usually say, like, inspirational stuff?” (Laughter) “It’s usually in the big hall.” 

And that’s when it dawned on me: This kid had only ever experienced disabled people as objects of inspiration. We are not, to this kid — and it’s not his fault, I mean, that’s true for many of us. For lots of us, disabled people are not our teachers or our doctors or our manicurists. We’re not real people. We are there to inspire. And in fact, I am sitting on this stage looking like I do in this wheelchair, and you are probably kind of expecting me to inspire you. Right? (Laughter) Yeah. 

Well, ladies and gentlemen, I’m afraid I’m going to disappoint you dramatically. I am not here to inspire you. I am here to tell you that we have been lied to about disability. Yeah, we’ve been sold the lie that disability is a Bad Thing, capital B, capital T. It’s a bad thing, and to live with a disability makes you exceptional. It’s not a bad thing, and it doesn’t make you exceptional. 

And in the past few years, we’ve been able to propagate this lie even further via social media. You may have seen images like this one: “The only disability in life is a bad attitude.” Or this one: “Your excuse is invalid.” Indeed. Or this one: “Before you quit, try!” These are just a couple of examples, but there are a lot of these images out there. You know, you might have seen the one, the little girl with no hands drawing a picture with a pencil held in her mouth. You might have seen a child running on carbon fiber prosthetic legs. 

And these images, there are lots of them out there, they are what we call inspiration porn. (Laughter) And I use the term porn deliberately, because they objectify one group of people for the benefit of another group of people. 

So in this case, we’re objectifying disabled people for the benefit of nondisabled people. 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.” 

But what if you are that person? I’ve lost count of the number of times that I’ve been approached by strangers wanting to tell me that they think I’m brave or inspirational, and this was long before my work had any kind of public profile. They were just kind of congratulating me for managing to get up in the morning and remember my own name. (Laughter) And it is objectifying. These images, those images objectify disabled people for the benefit of nondisabled people. They are there so that you can look at them and think that things aren’t so bad for you, to put your worries into perspective. 

And life as a disabled person is actually somewhat difficult. We do overcome some things. But the things that we’re overcoming are not the things that you think they are. They are not things to do with our bodies. 

I use the term “disabled people” quite deliberately, because I subscribe to what’s called the social model of disability, which tells us that we are more disabled by the society that we live in than by our bodies and our diagnoses. 

So I have lived in this body a long time. I’m quite fond of it. It does the things that I need it to do, and I’ve learned to use it to the best of its capacity just as you have, and that’s the thing about those kids in those pictures as well. They’re not doing anything out of the ordinary. They are just using their bodies to the best of their capacity. So is it really fair to objectify them in the way that we do, to share those images? People, when they say, “You’re an inspiration,” they mean it as a compliment. And I know why it happens. It’s because of the lie, it’s because we’ve been sold this lie that disability makes you exceptional. And it honestly doesn’t. 

And I know what you’re thinking. You know, I’m up here bagging out inspiration, and you’re thinking, “Jeez, Stella, aren’t you inspired sometimes by some things?” And the thing is, I am. I learn from other disabled people all the time. I’m learning not that I am luckier than them, though. I am learning that it’s a genius idea to use a pair of barbecue tongs to pick up things that you dropped. (Laughter) I’m learning that nifty trick where you can charge your mobile phone battery from your chair battery. Genius. We are learning from each others’ strength and endurance, not against our bodies and our diagnoses, but against a world that exceptionalizes and objectifies us. 

I really think that this lie that we’ve been sold about disability is the greatest injustice. It makes life hard for us. 

And that quote, “The only disability in life is a bad attitude,” the reason that that’s bullshit is because it’s just not true, because of the social model of disability. 

No amount of smiling at a flight of stairs has ever made it turn into a ramp. Never. (Laughter) (Applause) Smiling at a television screen isn’t going to make closed captions appear for people who are deaf. No amount of standing in the middle of a bookshop and radiating a positive attitude is going to turn all those books into braille. It’s just not going to happen. 

I really want to live in a world where disability is not the exception, but the norm. I want to live in a world where a 15-year-old girl sitting in her bedroom watching “Buffy the Vampire Slayer” isn’t referred to as achieving anything because she’s doing it sitting down. I want to live in a world where we don’t have such low expectations of disabled people that we are congratulated for getting out of bed and remembering our own names in the morning. I want to live in a world where we value genuine achievement for disabled people, and I want to live in a world where a kid in year 11 in a Melbourne high school is not one bit surprised that his new teacher is a wheelchair user. 

Disability doesn’t make you exceptional, but questioning what you think you know about it does. 

Thank you. 

Call Me Pretty

“Hi, Elise! Oooh, you look much prettier in person. Do people tell you that? I saw a picture on Kakao and I thought, oh. But you look much better in person! Some people aren’t photogenic.” 

Thanks, Regina*. Nice to meet you, too. 

Regina is an acquaintance of my Dad’s. Dad connected us in hopes that Regina will find me a job at the Cook County Circuit Court where she works as an interpreter. We meet at Twin Dragon, a Korean-owned Chinese restaurant in Glenview. They have the best Jjamppong and Gahn-Jjajangmyeon in Chicagoland, but they only have three-and-a-half stars on Yelp. They deserve at least 4.5 stars, but non-Asians aren’t the best judge of Korean-Chinese food. You’ll notice the one-star reviews are from non-Asians and the four-star reviews are from Asians. That’s why when I vet an Asian restaurant, I only look at the Asian people’s reviews. But I digress.

I sit down at the round table next to Regina. Given only two facts about Regina: Korean-American woman; early to mid-40s, I expected her to look like all the Korean school teachers I had growing up: short hair, glasses, light brown eyeshadow, a little bit of natural lip-colored lipstick, and an earth-tone suit jacket and a long skirt that does not complement her short stature. But in front of me sits the opposite: Regina, tall and thin, dressed in a tight black top and black skirt, has straight blonde hair down to her waist and tan skin most Koreans can only achieve from regular visits to L.A.TAN. Her eyes, twice the size of my eyes, dressed up with a thick layer of eyeliner and dark eye shadow, stare at me with intense interest. Her red lips part to tell me, “Elise, you are a pretty girl. You have nothing to worry about! Really, you are pretty!”

I don’t know why you think I’m worried about my appearance, but thanks for the reassurance, I guess. I fidget in my seat with my arms crossed, trying to keep my left hand hidden.

“Maybe just… put your hair down. Grow it out and put it down and get it styled like mine: straight and styled. And maybe a little eyeliner. Yeah.”

I thought we were meeting about potential jobs; instead, she wants to know what kind of boys I like and if I ever dated before. Do I want to be set up? She reassures me again that I’m pretty enough. Boys could like you!

Then she brings up the Big One. She tells me my parents told her about my disability: my hand. She tells me it’s not a big deal because I’m very functional. I have nothing to worry about. She suggests I get a prosthetic. I tell her I don’t want one. She tries again. Just get one for the look of a real hand, she says. Before I respond, she announces, “I would date a guy with a hand like that. Maybe like no arm, too, is okay. But no wheelchair.” For fuck’s sake.

She continues, “Yours is the most mild disability I have ever seen on a person. Really! It’s not even noticeable. Right? A lot of people don’t notice it right? Yeah, you cover it really well. Good.” I just sit there, taking in all her insensitivity, numb to this kind of thinking because I’ve hated my hand for so long anyway. 

Regina goes on, “If I were your sister, I’d tell you to cover it. You don’t have to show it unnecessarily.” I laugh and say, “Ok, thank you.” I don’t know how else to respond. My real sister has never and would never tell me to cover my hand. Regina reminds me of all the adults who decided I needed to know I was disabled (eye roll) and had some exciting advice for me (bigger eye roll).

A couple of weeks before meeting Regina, one of my uncles said to me, “I’m going to be honest with you: you’re handicapped. It’s going to be hard for you to attract a man. You need to make a lot of money so men will be attracted to you.”

When I was a college student, one of my campus pastors advised me, “Warn people before you show them your hand. You don’t want to shock them.” It’s most important to think about others. Let’s protect the sensitive people who have all their limbs. Fuck your feelings and desire to be treated like a normal human, Elise. Who cares if you’re lonely and in agony?

The day after my lovely lunch rendezvous with Regina, I go to the movies with Eliot. We’re just friends now, but in December 2015, he’ll tell me he likes me and on September 22, 2019, we’ll get married. What do you know? I didn’t need a lot of money to attract a man after all.

After my hangout with Eliot, I come home and write in my journal: 

I hung out with Eliot today and it was such a struggle for me to enjoy it because I was so suffocated by my need to hide my hand. I hate it. Not my hand.
I hate this… hiding. It’s so heavy. It hurts.

As I write this post, I’m in my home office, and Eliot is working next to me. I’m reminded of the ache to be free of hiding before I came out about my hand to him and my community. I remember the fear of rejection. I’m sorry for how little credit I used to give people.

I still struggle with hiding my hand – particularly around Koreans and Korean-Americans. My fear of rejection from my community shaped by comments from people like Regina, my uncle, and my pastor – all of whom are Korean or Korean-American. I understand that these comments don’t come from a place of malice; it’s ignorance. It’s from living in an Ableist society. But God, I am so tired of it. I reject it all. Can we do better? Please. 

*Name has been changed.

A Toddler, a Banana, and a Recovering Shame Addict

It’s a summer day in 2016 and I’m at an indoor pool with some friends. A couple months before today, I had publicly shared – first at church and then on Facebook – a part of myself I had been hiding for 27 years: my disability. In 2020 I like to call it a limb difference, but in 2016 I call it a disability. I was born with a left hand amputation.

At the pool I try not to hide my hand like I used to. But it’s still a struggle. My body remembers all the years of hiding and it’s itching to cover my hand. It’s especially reflexive around toddlers. Babies are ok because they don’t even know what their own fingers are; toddlers are a different story.

My friends Daniel and Selyun are here with their three-year-old Lily. Lily is a quiet toddler. Always cautious and thoughtful. Lily is so proper and ladylike for such a tiny human, it makes me giggle. At church services she sits with better posture than all the adults – back straight and hands folded in her lap. I watch her and wonder if she comes from a royal bloodline.

My favorite moments are when she acts like a dismissive queen. For instance when she eats a donut, decides she doesn’t want it anymore, hands the leftovers to the nearest adult – whether she knows them or not – and walks away with a look of disdain. My friend Jane and I like to narrate the scenario: Here, peasant. Enjoy my garbage.

Lily is also highly aware of her surroundings and people. I love this about her, but as a recovering disability-hider, it makes me anxious.

Today Lily is as quiet and careful as ever. She’s scared to go in the pool but she’s enjoying sitting at the edge and kicking her feet in the water. After about an hour, Lily becomes comfortable going a little farther in the water: ankles, knees, waist, neck. The pink frills at the collar of Lily’s baby blue swimsuit dancing in the sparkly water, bringing out the pink hue in Lily’s adorable droopy cheeks. 

We’ve established a good routine after four or five banana bites. I start peeling the banana when I see Lily getting out of the pool. I watch carefully in anticipation because, with my left limb difference, it takes me a little longer to peel the banana.

I see Lily is on her way for the sixth bite. I’m trying to peel the banana, but I’m struggling. By the time Lily is in front of me, I’m still fiddling with the banana with my little hand. I start to tense up because I don’t know if Lily has ever noticed my hand before. I try to play it cool, kind of laugh, and finally get enough banana out of the peel to feed Lily. But she’s distracted for a moment because she’s noticed it. She takes a bite of the banana, shifts her body, and tilts her head a little to get a better look at my hand as I try to hide it behind me. She has a blank stare. She points with her index finger and makes a questioning noise, “Uh?”

I don’t know what to do. Do I address it or keep hiding it? Should I give her a better look? I decide to put it out in front of her so she can see it better. She stares – again a blank stare. No judgment, just curiosity. Point. “Uh?” She looks at her mom.

Now my body tenses up even more. It starts to tingle with anxiety and I can feel the sweat in my armpits, leg pits, and my upper lip. I’m so sorry, Selyun, now you’re being pulled into my awkward situation. You probably feel uncomfortable and don’t know what to say and don’t want me to feel weird and I don’t want you to feel weird. But it’s weird. I’m sorry. I’m sorry. Why was I born this way? I’m sorry. 

I’m about to pull my hand back behind my body when Selyun says in her native Korean, “Oh, that’s auntie’s hand. 예쁘지 (Yeh-bbeuh-gee?) Isn’t it pretty?” 

Selyun points to Lily’s left hand, “Just like you were born with that hand, Auntie Elise was born with this hand.” She points to my left hand.

예쁘지. Yeh-bbeuh-gee. I have never heard this word used to describe my hand, let alone in Korean, a language rarely used in my household to even talk about my disability. Or “problem” as my mom calls it in her limited English on the rare occasions that she does mention it.

My hand is cute, I think to myself. 

Lily doesn’t say a word. She goes back to the pool and moves on with her life.

At church, Lily and I share a few more moments over the next few years where she sees my hand and curiosity strikes her again. I put it out for her to see and let her touch it. I say to her, “Yeah! This is auntie’s hand. Isn’t it cute? It kind of looks like a baby’s hand, right?” Lily giggles and nods. I giggle with her. She goes back to playing with the other toddlers.

Lately, I’ve been thinking a lot about how I will have to address my hand with my niece. And one day, hopefully, my kid(s). It scares me. But I’m thankful for Selyun’s example.

To Her, Everything is Precious

In 2016 I talked to my parents for the first time about my limb difference. I recorded the conversation. My friend Robert Andersson interviewed me about my limb difference before and after I talked to my parents. He beautifully edited all the audio recordings into this piece. The final piece used to be on his podcast Awful Grace Radio. Unfortunately, he’s taken down all his stories and is no longer podcasting. So, I’m giving my story a home here.

Mom Caught Me Taking Drugs.

“그약 먹지마! 아유… 너무 속상해 (Don’t take that medicine. I’m so upset),” Mom said to me after she caught me taking Cymbalta a couple weeks ago. Cymbalta is an antidepressant. One of the medications I tried along with Sertraline, Wellbutrin, Wellbutrin XR, Lexapro, Prozac, and probably one I’m forgetting. My parents don’t believe in antidepressants because they don’t believe in Depression.

Depression isn’t real – you’re just sad. Don’t be sad. What do you have to be sad about? Depression doesn’t exist – you just need to exercise and get a job and you’ll feel better. Since Depression isn’t real, Mom and Dad weren’t worried when I told them I was depressed. It was the Sertraline that made them “so upset.” Upset.

In Korean we say, “속상해 (sohk-sang-hae).” The first syllable, “속” (sohk) can be translated as “inside” or “heart.” The second two syllables “상해” (sang-hae) means “damaged” or “rotten.” When you say you’re upset in Korean, you’re saying your heart has been damaged. In other words, I damage my mom’s heart by trying to keep myself alive.

Mom talks about antidepressants with a gravity appropriate for, I don’t know, an opioid addiction? Maybe that’s too severe, but she’s pretty serious about it. “You need to stop taking them,” Mom says, brows furrowed. “큰일나. (Kkeun-il-nah) They’ll mess with your body and you won’t be able to have kids.” 큰일나 (Kkeun-il-nah) directly translated in English means, “A big event will occur.” It’s a negative phrase meaning something bad is going to happen. Warning: Danger.

I’m sure Mom was extra hurt and worried because she thought I had stopped taking my medication six years ago when I first started taking them and she and Dad told me to stop. Back then I couldn’t explain Depression or medication very well, and it was exhausting to explain myself anyway, so I just nodded and continued taking the drugs in secret.

Before I got married and moved out of my parents’ house I would stash Sertraline, or whatever I was taking at the time, in my backpack because my parents respected that boundary. I’d take the pills out quietly and pop them in my mouth before I left my room to get water. Or I would get a cup of water and take the pills in my room. I was really careful. But I guess taking them freely in my own home after I got married made me too loose with my drug use. That rhymed, ha.

A couple weeks ago I visited my parents. At 8PM I took two Cymbalta capsules and popped them in my mouth as I walked down the hallway toward the kitchen on the way to get a glass of water. I reached the water cooler and thought I had gotten away with it until I heard Mom ask from the kitchen island, “What medication did you just take?” 

I’m not a good liar. So I drank my water and pretended not to hear her. She walked over to me and got close to my face. She asked again in almost a whisper as if it was an illegal substance, “What medicine did you just take?”

I looked her in the eye and continued to drink water trying to gather up the strength to lie. Just say it’s Tylenol, Elise. But when she asked me again, I swallowed my water and instead of lying, I shook my head as if to say, “It’s nothing, it’s nothing.” That gave it away. 

“Are you taking those pills you were taking before?” I nodded. 

“Stop taking them!” She was really upset now. If I were a teenager in that moment, my heart would have started racing and my throat would have had that swollen feeling. I would have felt so ashamed and sorry for taking medication my parents don’t approve of. But I’m 31 years old and have been going to therapy for six years. So instead I said, “엄마 (Mom), It’s fiiine,” and walked back to my room to tell my husband and laugh about how I’d been caught taking antidepressants. 

Even though I’m 31 and no longer afraid of my parents’ opinions. I had still been hiding my medication from them because I still don’t know how to have a direct, clear conversation about why I need to take my antidepressants. I immediately go into defense mode and assume they will never understand. I dismiss everything they’re saying about it being dangerous, etc, and walk away hoping they’ll leave me alone.

I don’t think I owe them anything. It’s my life and my body. I’m trying to save myself any way that I can right now. On the other hand, it would be nice to explain and eventually have parents who understand that Depression is real and suicidal thoughts are real and I have been suffering for the last six years. I’m not just lazy. A word they use to describe me all the time. They even once told our waiter at a Korean restaurant that I was lazy – I don’t remember why. 

I want to be understood by my family. I’ve tried to explain it when I first started antidepressants. But they were so against it that they couldn’t really hear me. And I don’t think their views have changed.

I’ve had really bad luck with antidepressants. My body hasn’t responded well to all the ones I’ve tried so far. I’ve experienced bad side effects and the medications haven’t been very effective. But they have helped with the suicidal ideations more than if I wasn’t on them, but not completely.

In addition to Cymbalta, I started taking Abilify exactly a week ago. It’s a different class of medication and I’m finally starting to feel a little better. Apparently I respond better to antipsychotics than SSRIs. (I hate that it’s called an antipsychotic. It makes me feel like a crazy person.)

I don’t like having to take medication. I wish I could live without them. But they’re keeping me alive. And a month ago I didn’t even want to be alive. A week ago I wouldn’t had been able to write five sentences. But today I am happy to be alive and I was able to write this blog post. I’d say that’s an improvement.

Even if my parents never understand, that’s okay. It’s more important that I get to share other parts of my life with them. We’re going home this weekend, so maybe I’ll try to explain it to them again. If I do, I’ll have more to write about 🙂

Shame.

There is no greater agony than bearing an untold story inside you.

Maya Angelou

On Sunday, April 24th, I had the privilege to be seen and heard by my church family in an anxiety-inducing yet liberating presentation. The Creative Arts Team, or CAT, at my church takes over the last Sunday service of each month. For April’s service we focused on Deuteronomy. In a nutshell: God reminds the Israelites over and over again that He brought them out of Egypt and slavery. God commands the Israelites to love and serve the marginalized. 

“17 For the Lord your God is God of gods and Lord of lords, the great, the mighty, and the awesome God, who is not partial and takes no bribe. 18 He executes justice for the fatherless and the widow, and loves the sojourner, giving him food and clothing. 19 Love the sojourner, therefore, for you were sojourners in the land of Egypt. 20 You shall fear the Lord your God. You shall serve him and hold fast to him, and by his name you shall swear” | Deuteronomy 10:17-20 (ESV)

Four CAT members, including myself, reflected on the ‘Egypt’ that God brought us out of and how we, in response, try to ‘love the sojourner.’ For my Out of Egypt story, I read a journal entry as my sister projected photos I took of the very thing I’ve exhausted myself trying to hide for 27 years.

October 9, 2014.
3:05pm

I went to the Rehabilitation Institute of Chicago today to get consultation for a prosthetic hand. Mom and dad came with me. We had a Korean interpreter on the phone, which was kind of awkward but I’m glad we had one.

There were so many people in the room today. Dr. Huang was sitting next to me on my left at the desk, mom and dad stood next to me on the right, and across from our little semi circle stood another semi circle of doctors: two residents, two prosthesis students and Dr. Robert. All looking at me. Asking me if there was anything I particularly struggled with and that I wanted in a prosthetic. I didn’t really know what to say. I just want to be able to do everything they all can do. But I had to say specific activities. I said things like, “I want to be able to hold my notebook and write at the same time when I go reporting or carry two things at a time in general and cut steak on my own at weddings.” 

I asked Dr. Robert if my prosthetic hand depended on what objects I want to hold and he said, “Yeah knowing what you want to be able to do will help us determine if you should have a hand that goes like this,” and he made motions like a lobster claw, “Or like this,” and he made a motion with his fingers more rounded. I said, “Well I want to be able to hold my notebook.. but I also want to be able to ride a bike.” And then I cried in front of these strangers. They said I can attach things to my bike handle to help me and get other tools to help with other activities, but a prosthetic hand won’t give me the ability to do everything a flesh and bone hand can do. 

Why do I have to pay thousands of dollars to have a normal life?

I kind of feel like everyone thinks it’s a luxury to have two hands and I don’t really need it so why don’t I get lobster claws for a hand and be able to hold up a piece of paper and let that be good enough?

The doctors asked my parents if they noticed anything else I struggled with. I didn’t expect them to say much. I thought they’d say, “Elise is pretty good at doing most things on her own.” But then my dad leaned in towards the phone so the interpreter could hear. He said, “I think she does struggle with practical things. But I think she struggles the most with feeling insecure around people and she doesn’t like to go out and meet new people.” And I started to tear up AGAIN. I didn’t know they knew that about me. I thought my parents didn’t really think about it at all or they expected me to be fine with it. They never talked to me or asked me about it when I was growing up.

My parents wanted me to get the most realistic looking prosthesis even if it wasn’t very functional so that I could be in public and not feel like I have to hide. I just want to be whole.

My last visit to RIC was about year and a half ago now. About eight months after RIC applied for my prosthesis, I received a call from my health insurance provider. The representative told me they had to deny my request to cover the prosthesis because it wasn’t a health issue but a cosmetic one. “That’s fine,” I told her. “I don’t want one anymore.” Which is true – for the most part. (I still want a bebionic so I can pretend I’m a cyborg.)

A month before I made my RIC appointment, I started seeing a therapist. I had no idea how to process my experiences as a Korean American born with a disability. I had never talked about it out loud before. Once I started opening up about it, I quickly realized that my pain wasn’t about the physical activities I couldn’t do. My pain was in the loneliness of it. The silence around it. The shame eating away at me.

I looked for a support group specific to Asian Americans with physical disabilities like mine but couldn’t find any. So I created my own support system. I’ve shared about my hand with more people in the past year than in all the years before combined. I’ve connected and become friends with others who have amputations but don’t hide them like I do. They don’t have shame about it. I’m beginning to let go of my shame, too. 

I believe if I valued my voice as a disabled Korean American Christian woman, I could normalize my disability and take the shame out of it. Sharing my story might help other Asian Americans with disabilities who might be silently hurting as I write this. At the very least, it’d be empowering to share, cry, complain and even laugh about our experiences.

I was always afraid of talking about my hand because I didn’t want to be defined by it. But I can’t shake the feeling that God is telling me to get over it because there’s so much more He can do with my story. Maybe it’s all in my head- but if there’s a chance that it isn’t, I don’t wanna miss out on seeing what He can do.

Anyway, here’s ‘Wonderwall.