I’d write a play in exchange for ice cream

I’d be lying if I said I wouldn’t sell my soul for money.

In a way, that’s what my job as a professional disability advocate and writer is: Mining my life as a resource for content to monetize, whether directly or indirectly.

Is the net result adding good to the world? I’d like to think so; I can say my doctors credit me as a key reason adult SMA patients have financial aid for Evrysdi (risdiplam) in Singapore. Yet, let’s not pretend I wasn’t paid for most of the pieces I wrote about the topic, or that those pieces don’t exist on websites serving their readers ads, or that the pro-bono exposure didn’t serve my own fundraiser for the drug and my career.

It’s arrogant that I ever looked down on marketing jobs, the more I think about it. My soul was tainted by permanent ink the moment I decided to share my life with an audience. I relate uncomfortably well to Panic! At The Disco’s song “Hey Look Ma, I Made It.”

Hence my pursuit of theater. I’ve had enough of me.

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From the outside looking in, an actor’s job is to be a puppet whose strings are pulled by the director. That was my assumption going into a professional development program for the performing arts by ART:DIS, a nonprofit for disabled Singaporean artists.

Therefore, when the head of the performing arts department, Peter Sau, asked if I had any interest in writing a play, I patently declined.

The truth of acting, as with most things, is more complex. Though a director does steer the ship of a project, actors have more ownership of their work than a layperson might expect. When I joined a production written by my friend Shalom Lim last year, I was surprised to find I had a say in character dynamics, backstory, line delivery, and costuming.

Simply put, acting is part of a collaboration within an ostensible hierarchy. It wasn’t the utterly complete escape I thought it’d be.

But the concept didn’t completely click for me until ART:DIS staged another production in late May. Co-written by another friend of mine, Jade Ow, and directed by Sau, “Year Zero” was part of the Singapore International Festival of Arts. The play was a meta exploration featuring disabled actors questioning a script they were given — and in doing so, what inclusivity, labels, and language actually mean and can achieve.

As I watched, I realized I could identify signature patterns of Jade’s writing voice in the script. Now that I know what the production process for actors is like, I also saw glimmers of the actors’ influence on their characters and on the overall direction.

By the end of the night, I resolved: Fine! If my story and I bleed into anything and everything I do, I’ll write a play if given the opportunity one day. Be the change I want to see in the world, blah, blah, blah.

(I may not be entirely happy about my decision … yet. I’m coming to terms with it, I promise.)

Maybe fully embracing my voice and identity in my work is, itself, a lesson in how to shape and protect aspects of myself as I hawk my story. I wish I didn’t need dinner, but I do, and I like having dessert after. Preferably ice cream.

And I admit, there are concepts for plays and films I want done sooner rather than later in Singapore’s local scene and internationally. If you want something done properly, do it yourself, right?

As a bonus to consider, I could possibly ask each project’s team if I could pull a Lin-Manuel Miranda — in other words, cast myself and my friends.

Now, the question is: When and where do I sign the paperwork?

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.