Artist and playwright Shalom Lim shares why storytelling is a powerful way to center Duchenne voices, challenge misconceptions about disability, and create more authentic representation on stage in Singapore. Read more from him in his column: Duchenne: Shalom’s Lifelong Partner-in-Crime.
Transcript
Hi, I’m Shalom Lim. I am an artist, and I’m from Singapore. I run my own festival arts studio with my visually impaired partner.
I think for me, I really wanted to show that Duchenne voices deserve to be heard onstage, whether it’s directly or performers, even just conversation. And I think for me, I also want to show that our stories matter just as much as any other individual, even people with other types of disabilities.
I feel that rare diseases is very visual on stage, and I wanted to really feature that, especially in a place like Singapore where people don’t even know what Duchenne is. And I also wanted to ensure that there can be some authentic representation of complications with fatal disabilities in Singapore, and also to be a voice for them.
As for any first-time playwright or writer, I was quite anxious about really showing my vulnerabilities on stage. Recently, I actually wrote my debut play, and it was actually partially staged last month. That’s a dramatized reading. But it’s really cool to see, like, a story that I wrote coming to life on stage from someone who is a friend to me and who represented my character stage. I think it was something that I felt very liberating.
And also, I am someone who fully believes that Duchenne isn’t something that I need to overcome or to fix or to cure. In fact, it is something that I feel is a strong part of my identity as a person. And it’s also a big source of pride. And I wouldn’t be where I am right now without the condition.
And at the same time, people do not agree. They think that without Duchenne I could be so much more. But I really think that I am who I am because of this very condition. As much as it is life-limiting, it’s given me so much, and given me a voice and given me something worth sharing on stage. So I really feel that.
I had some doubts initially, but in the end, the play was so well received that that actually placated all the anxieties I had at the start.
As a writer with MD, I feel storytelling has a very important part to play in our community, and the way we want our voices to be heard, because it makes rare diseases like muscular dystrophy more relatable and easy to understand.
The biggest challenge I face in Singapore is people don’t even understand disability, let alone rare diseases. So storytelling acts as a bridge, as a common language that enables people who don’t have muscular dystrophy to at least have a glimpse, or have a taste of what it’s like and the barriers that we face every day.
It’s not so much Duchenne the condition that causes all these barriers. It’s the way the system is structured, the way the world is not built for people with Duchenne in mind. And yes, we are a small population globally and even smaller in Singapore, but that doesn’t mean that people should not design things without us in mind.
We matter just as much as anyone else. We will not have the same numbers as other disability groups, but we do matter. So storytelling gives us that edge and allows us to be seen as people. Also as people who deserve to be embraced, and for systemic change to take place to erase the barriers that we face.