My life of privilege while living with SMA

What do my doctors and dates have in common? It’s that I’ve asked most of them this question: “Am I the first person with SMA you’ve met?”

Surprisingly, I’ve heard a few doctors tell me no. I may be the first adult SMA patient they’ve treated, but they’ve seen pediatric cases here and there, out of the 40 to 50 SMA patients living here in Singapore. The dates, on the other hand, surprise me by telling me, “You’re the first disabled person I’ve seen on dating apps at all.”

It’s not that I expected interabled dating to be a popular practice in Singapore. As much as I love my country, I’m keenly aware of its populace’s biases. Even if there are nondisabled people willing to date women in wheelchairs (there are), the proliferation of a nuclear family as a Singaporean ideal only reinforces an environment that believes disabled people are undesirable. Therefore, most of us are unwilling to put ourselves out there.

But whenever a date tells me they’ve never seen another disabled person try to date, I think to myself, “Wow. This is what privilege looks like.”

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Because it does take a truckload of privilege for me to date. First, I have an iPhone and Wi-Fi that allowed me to meet my Texan ex, who helped me shirk the ableist belief that no one would want me. The aforementioned tech is required for dating apps, too. When a meeting is arranged, I have a power wheelchair and hired caregiver for my independence. And if anything should go awry afterward, I have a loving family and medical team who’ll believe and support me.

I haven’t even touched on the role of Evrysdi (risdiplam) in all of this. This disease-modifying therapy helps stabilize my condition and has provided some reversal as a bonus. I can breathe better, speak with more clarity. My stamina lasts longer. I get to witness the relief in people’s eyes when I tell them that despite older type 2 patients historically needing a BiPAP 24/7, I probably won’t.

In other words, Evrysdi makes me appear “less disabled” than without it.

Live, love, lift

On the surface, the first half of this column may look like me rambling about how my dating life is going. I want to be clear that it’s not.

What this column is instead is me realizing how much good I have in my life. It just so happens that I think it’s most apparent in my pursuit of romance.

It’s also an indictment of the way things are. While I hope disabled readers are heartened to hear we’re more desirable in our conditions than we believe, it saddens me that we need the encouragement at all. It shouldn’t have taken the number of resources and years it did to counteract ableist messaging for me, either.

To paraphrase what someone said to me recently, nondisabled people don’t typically have to put this much thought and work into the details of their lives.

As I sit and ponder Singapore’s 60th year of independence, my first anniversary of acquiring Evrysdi, and SMA Awareness Month, I’m hoping there will be a day where disabled people freely and boldly participate in all corners of society. Until then, those of us who are privileged enough ought to do what we can to uplift fellow SMA-bearers in our communities.

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.