What does it mean to be sexy with a disability like SMA?

Unintentionally, last year, most of my immediate family bought me Christmas gifts with the same theme. My brother, Gabriel, got me a handmade blue-and-white scarf from China. Mom got me a sheer-ish white shawl. My stepdad got me a red knitted cardigan.

See what they’re all aiming for yet?

Together, their gifts conveyed a single message to my ear: Cover yourself up.

I’m not putting words in their mouths. Later, my mom would make a joke with those exact words. I laughed and shook my head.

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Until a couple of years ago, I wasn’t one for sleeveless tops or dresses. The ones I tried as a child tended to be for kids with bigger physiques than mine. The straps would slip off my bone-thin arms, prompting adults to joke that I was trying to be as sexy as pop stars. I wasn’t. I merely had the misfortune of lacking muscle mass to fill most of my clothes. Such is growing up with SMA.

Then, puberty hit, and my spine developed scoliosis. I started to be really self-conscious about my body. What preteen girl wouldn’t be? We’re bombarded all the time with beauty ads, celebrity diets, and magazines telling us what people find attractive. Hunchbacks are something out of body horror or the shadows of Notre Dame.

I decided then that I wasn’t going to waste money on clothes that wouldn’t fit. Feeling comfortable and secure, perhaps even hidden, was my top priority.

But once I entered my 20s and got a job that gave me money to potentially waste, I would spend time scrolling on sites like ASOS and Zara to curate a fashion aesthetic that wasn’t picked out by my mom. As much as I love her and agree with some of her styling choices, we have decidedly different tastes. She likes bold colors and patterns, while I prefer simple, versatile pieces and replicas of iconic designs from fandoms I’m part of.

All those hours shopping eventually affected my psyche, as though scrolling through the wares was hypnosis, somehow convincing me to buy a couple of sleeveless dresses from the brand Commense. One was a corseted dress resembling one of Taylor Swift’s “Tortured Poets Department” era dresses, but shorter. Another was a tiered dress with adjustable spaghetti straps and a sweetheart neckline.

I figured, if those dresses slid down my shoulders, I could always use a sweater to cover up.

Miraculously, the dresses fit like custom-made gloves. Adjustable straps on clothes, I now believe, are one of mankind’s greatest inventions.

Soon, my wardrobe was filled with more sleeveless dresses. The ones I bought early on were intended to be worn with sweaters and jackets; however, as I began spending more time out in Singapore’s jungle-like, humid heat with friends, I shucked off my top layers.

At some point, I stopped caring about what people might think about my hunchback. I wasn’t even making a conscious choice to be positive about my body or anything like that. I was just unbearably hot — no pun intended.

‘Too sexy for my shirt, eh?’

I might have overdone the brow makeup. (Photo by Sherry Toh)

Lately, though, I’ve wondered if it’d be so bad for me to be intentional with the aforementioned pun. Can’t I want to feel sexy as a young adult? Isn’t it human nature to want to be attractive?

I’ve spent my entire life afraid of that label and what people would think if I attempted to reach for it. Disabled people are often desexualized and infantilized, regardless of gender or age. The last thing I want is for people to believe I’m naive about my body, cultural norms, why the norms exist, and the predators I could unintentionally attract.

Heck, to get used to the idea that I could be a sexual person, I’ve joked online that I’d like to write erotica professionally, if I ever get a bachelor’s degree in creative writing or English literature. I read “spicy” books and fanfiction regularly. Sabrina Carpenter’s “House Tour” can stay on repeat on my iPhone for days.

What does sexiness or projecting a sexy appearance mean anyway? Is it just a lack of clothes? An allure that arouses the desire to take your pants off? Or something more? How do you achieve the vibe with a disability like SMA that contorts your skin and bones?

The answer is different for everyone, but mine is: confidence in myself and my body, no matter what I’m wearing or not, or how others perceive me.

I don’t want to cover up because someone asked me to. But I don’t want to take my clothes off because someone else asked, either. I want my body to bring me the most pleasure out of every person I share it with.

Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.