How SMA helps me understand my bisexuality, and vice versa

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by Sherry Toh |

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“People think bisexuals stereotypically can’t decide on which gender we want to have sex with, when the truth is, we can’t decide on anything,” someone in a group chat once joked.

I laughed far longer than perhaps was appropriate, nodding along at the truth of the statement, at least in my experience. What should I have for dinner? Which outfit should I wear out? Do I want to watch something on Netflix or Disney+? It’s all too hard to decide. Thus, I am caught in a nearly eternal limbo of decision making, with only the occasional brief respite.

Having SMA is a lot like being bisexual. But before you wonder “Is this girl for real or on drugs? What is she saying?” let me bridge the two experiences for you. (Although if you’re genuinely curious, I am indeed on drugs, but they’re either painkillers, vitamin supplements, or a disease-modifying therapy for SMA. No psychedelics here.)

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Two different worlds

Contrary to misconceptions, “bisexuality” isn’t defined as an attraction to men and women within the gender binary. The “Bisexual Manifesto,” published in the multimedia magazine Anything That Moves in 1990, states that we should not assume that “bisexuality is binary or duogamous in nature: that we must have ‘two’ sides or that we must be involved simultaneously with both genders to be fulfilled human beings. In fact, don’t assume that there are only two genders.”

Bisexuality is, as the magazine points out, a fluid identity and a type of attraction. But what something is to an individual is different from how society treats it.

In my head and my heart, I know bisexuality is a valid identity marker and there’s nothing wrong with it. However, it’s all too easy to internalize the biphobia I encounter every single day. Anything That Moves’ name is itself a reclamation of an accusation thrown too often at bisexual folks by straight and gay communities alike — that we will bed anything that moves.

We are reduced to our bodies, stereotyped, misunderstood, and asked to “pick a side.” As such, the term “bisexual” comes with certain societal connotations and expectations, while we find ourselves trying to reconcile being too straight for gays but too queer for straights, operating in a sort of unseen gray space.

SMA patients are similarly reduced to our bodies. But instead of having a stereotype in which we want to bed anything that moves, we, as disabled people, are seen as incapable of doing anything, in both the euphemistic and general senses of the phrase. We are expected to be destitute and overly dependent upon the people around us. We have a role to play as the sick and needy.

Therefore, it’s mind-boggling when we achieve something or participate in society in ways that are expected of the nondisabled. I was considering this recently when I had the opportunity to interview Austin Wintory, who made history for composing the only video game soundtrack to be nominated for a Grammy. SMA patients don’t typically do things like that. We can’t, right? There’s no way a reader would know the article’s author is disabled. They’d assume the opposite.

I struggled to reconcile my reality. I felt like I was living two very different lives: one as a patient begging the public for money to pay for a lifesaving treatment, another as a budding journalist climbing her way to a brilliant, promising career. In truth, it was all part of one life, and I was coping with chronic pain from scoliosis as I wrote the article.

To me, that’s a little like trying to reconcile that I’m in a happy relationship with my girlfriend while thirsting over hot British actors. If I revealed one part of myself to you but not the other, you’d be none the wiser.

The best of both worlds

Being queer and disabled is hard. I used to cry because I was both. Life with SMA was isolating enough; I didn’t need another reason to be ostracized and marginalized.

But it’s because I’m both that I can understand these things in a more nuanced, unique way. It’s how I can find the language to bridge the two identities. It’s how I know the precious value of someone seeing you for who you are instead of whatever image they’ve cooked up in their heads. If during Bisexual Visibility Month in September I can help people better understand both characteristics, all that pain will have been worth it.

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.

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