SMA Is Contributing to My Gender Crisis

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by Sherry Toh |

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gene editing, gender identity, Taylor Swift

I am giddy with excitement. Taylor Swift’s “Fearless” plays on my iPhone as I begin writing a column about that album and its effect on my life.

I know exactly what I want to say, how its structure will take shape, and how I’d like it to read like a diary entry to parallel Swift’s approach to “Fearless.” Instead of hesitating at every word choice as I often do, my fingers fly across the keyboard as I transpose nebulous late-night ideas into tangible descriptions I can hang my experiences on. 

Then I write the words “I and every young woman who grew up with her music …” 

Something inside me forces me to pause. I read the words over and over again. A young woman? Is that what I am now?

Suddenly, I feel disoriented. It’s not just the phase of my life that feels like it’s in question, it’s also my gender identity, something I’ve questioned only once before. Ironically, that single occasion happened the first time I had my period at age 19, which society views as a milestone of a girl transitioning to womanhood.

I continue writing the column. I describe myself as a “young woman” again instead of a “girl” because I want to push back against the infantilization of disabled people. But there’s a sense of unease as I do so. “Am I a woman?” I keep asking myself. “I don’t feel like I am.” 

Technically, yes, I suppose you could call me a young woman. I was assigned female at birth. I am now 22. I identify with she/her as my pronouns. I like things traditionally labeled as “feminine,” such as floral dresses, makeup, and the inherent romanticism in Swift’s music. On paper, I tick all the right boxes. But gender identity is much more than biological markers and the things you like. It is a framework for how you understand the world and declare your role in society.

I try to imagine myself in the role of a woman, with all the expectations it entails — emotional and sexual availability, fertility, perhaps becoming a wife and a mother — and I discover that I can’t.

SMA complicates the issue. Having a rare disease can mean you are precluded from societal roles before you can even begin to comprehend them, often due to the social barriers disabled folks face, and sometimes due to our disabilities themselves. How can I become a woman if I am infantilized and seen as nonsexual and unworthy of romantic love? I shall forever remain a girl.

Yet the expectations imposed on a woman aren’t entirely appealing to me. I want to be seen as an independent adult and to be someone’s lover, but I don’t want to be harassed simply because I’ve chosen to wear a short dress, nor do I want to raise children. In this regard, my disability both shackles and frees me.

But if I don’t identify as a woman, what am I? Nonbinary? Genderqueer? I don’t know yet. 

As I prepared to write this column, I read about the experiences of those who identify with gender-nonconforming labels. It provided insight into why they identify with their gender identities, and into the discrimination they face as a minority group. While I can relate to some of their experiences — such as the foggy mirror analogy therapist Laura A. Jacobs shared with The New York Times, in which someone may look into a mirror and not see themself — I don’t know if I relate to enough of their experiences to comfortably identify with any of the labels they use.

I wish I could provide a more satisfying answer about this dilemma. But figuring out who you are is hard, and I am new to unraveling the mystery of what my gender identity is. My understanding will change as I learn.

I’ll likely revisit this topic when I have the answers I need, and I promise to share them with you. If you’d like to share your story about struggles with gender identity, I’d be interested to hear it.

For now, I’m all right with she/her as my pronouns, and I may try she/they as an alternative to see how I feel. We can leave it at that.

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