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: