The Complexity of Characters: Representing Disability

Illustration by Baljinder Kaur from Fauja Singh Keeps Going by Simran Jeet Singh

Heather Haynes Smith, Ph.D. is an associate professor at Trinity University in San Antonio, TX. She teaches courses on special education, learning disabilities, and reading. She supports equity and reading initiatives through service, research, and providing professional development through community, professional, and educational organizations. 

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Simran Jeet Singh is author of the best-selling new children’s book, Fauja Singh Keeps Going. He writes and speaks frequently on issues of diversity, equity, inclusion and anti-racism. Simran is a 2020 Soros Equality Fellow, a Racial Equity Media Fellow with Interfaith Youth Core, a Senior Fellow with the Sikh Coalition, and a Visiting Professor with Union Seminary. 

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Despite making up the world’s fifth largest religious community and despite their visible presence around the world, no major press had published a picture book that centers on a Sikh story. That changed this fall when Penguin Random House (Kokila) released Fauja Singh Keeps Going: The True Story of the Oldest Person to Ever Run a Marathon, written by Simran Jeet Singh and illustrated by Baljinder Kaur.

While much has been made of how it helps representation for a largely unknown and misunderstood community, not enough has been made of its intersectional approach; it’s clear to anyone familiar with inclusion and justice that this is a book that aims to help children see and empathize with experiences different from their own, such as xenophobia, ageism, and classism.

One of these intersections that is underexplored and underrepresented is that of disability.  As a disability advocate and scholar, I wanted to learn about Simran’s process in writing about this aspect of Fauja Singh’s life and what he learned along the way. Here is a brief snapshot of our fascinating conversation.

How did your work in social justice and racial justice inform your approach to writing this book? And how did it shape the way you dealt with disability?

I have learned through my own life experiences that marginalized communities will never be able to lecture or preach or moralize our way into dignity. We cultivate empathy through connection, and storytelling is a powerful form of building connection. I also believe deeply that if we can teach our children to see the humanity in those who seem most different from them, then they will learn to see the humanity in everyone they meet. This is why Fauja Singh’s story was so compelling to me. So much of his life-story feels foreign to us, and yet, its relatability helps us see our common humanity.

Disability is just one aspect of Fauja Singh’s identity, and while it’s an important part of his experiences as a child, his disability didn’t define him. As I spoke to him while developing this book, he made it clear that he didn’t want to be seen as someone who had a deficit; he wanted to be seen for his full humanity. That resonated with me because, as someone who is hyper-racialized in modern America, I know what it feels like to be flattened into a single category. Being seen as a victim might engender sympathy, but even that feels dehumanizing. I don’t want people to limit how they view me based on a single aspect of my identity, and Fauja Singh didn’t want that either.

As someone who consults frequently in diversity, equity, and inclusion, it probably felt natural to bring forward different aspects of his identity. But at the same time, you don’t identify as someone who has dealt with disability. What steps did you take to ensure authenticity when representing an experience outside of your own?  

This is such an important question, because my answer now is markedly different from when I first started writing this story. At first, I thought it would be straightforward for me to share this part of his story. But I met a few challenges along the way that required some external consultation.

First, I wanted to be true to Fauja Singh’s own experience and not impose my own outside assumptions. Our relationship means a lot to me, and I really wanted to honor that by capturing his own memories. So a critical first step was to ask questions and listen, to learn about and understand the particularities of his own experience.

Second, I wanted to be sensitive to different perspectives on disabilities and ableism, from his childhood in an Indian village in the early 1900s to our now globalized world in 2020. So much has changed over the past century, and I want to be true to both: true to his own experience of it but also thoughtful about the kinds of messages we are transmitting to young readers about how to understand disabilities and ableism.

This last point leads to the most significant challenge, which was trying to share Fauja Singh’s personal experience with disability without falling into ableist tropes. This proved incredibly difficult for me, because his true story actually lends itself to a trope. He was able to start walking, and eventually, running, with hard work and perseverance.

I recognized that telling it in this way would perpetuate the ableist trope that anyone can “overcome” their disabilities if they just try hard enough. The subtext there is that people with disabilities are just unwilling to put in the work. I knew this was a problem, but to tell the truth, I really struggled to find the right way to frame it so that we were true to his story without reinforcing this negative assumption.

That’s such an interesting challenge, and one that I don’t think many people think about often enough. How did you ultimately resolve it?

I was so fortunate to have a team that was aware enough to see this pitfall, and yet humble enough to recognize that we needed to ask experts for guidance. This was such an important lesson for me on how to be thoughtful and sensitive in writing about experiences outside of our own; we just asked, with humility and curiosity, and we received wonderful feedback from experts on disability on how to move forward.

One of the best pieces of advice we received was to be intentional about telling these stories as people’s specific experiences. Being explicit in the storytelling helps avoid sweeping generalizations about what disability looks and feels like for everyone. This advice helped us adapt one of the refrains we use throughout the book, which comes as advice that young Fauja receives from his mother: “You know yourself, Fauja, and you know what you’re capable of. Today is a chance to do your best.”

It ultimately proved to be a very minor reframing from what we had initially, but to me, it’s made all the difference in the world. I’m so grateful to my editor Namrata for encouraging us to bring in expert consultants to help us further understand the issues and for teaching me how to navigate these kinds of challenges.

This is such a great example of how to tell authentic, sensitive, and humanizing stories that help us connect with people who have different experiences and identities from us. In addition to this, what do you hope this book gives to children around the world who read it?

To build empathy and to create an anti-racist society, we need to transform our ideas of what our heroes look like. When kids learn about Fauja Singh, I want them to see a new kind of hero, one who challenges our normative assumptions: an elderly, brown-skinned, turban-wearing immigrant who has experienced physical disability, who never learned to speak English, and who remains illiterate to this day. Opening their minds to these possibilities is a keystone to opening their hearts to difference, and this feels like the most important gift that we could give our children today.