When Tilly Griffiths was a child, she was adamant that her future job have nothing to do with disability. “I wanted to prove that I was more than that,” she says. Diagnosed with spinal muscular atrophy at age 1, she describes her muscles as about as strong as a newborn’s, and she has used a wheelchair since toddlerhood.
Griffiths, ’22, MA ’24, was raised in her parents’ bed-and-breakfast in rural England but grew up dreaming of going to college in the United States, living the type of hyper-social life she saw in movies like Legally Blonde. “I’d tell people what I wanted to do, and I could see they didn’t believe me,” she says. “They’re like, ‘Oh, yeah, that’d be nice.’” When she was accepted to Stanford, Griffiths became the first student to be granted fully funded full-time personal care attendants by England’s National Health Service while attending a four-year university abroad.
As an undergrad double majoring in political science and communication, she wrote opinion columns for the Stanford Daily spotlighting the fine line between independence and isolation, and the barriers posed by limited accessible transportation. She also served as the ASSU’s director of disability advocacy and co-founded a community group now part of the Stanford Disability Alliance. After a yearlong corporate social responsibility internship at the Walt Disney Company, Griffiths returned to campus to earn a master’s in journalism. And she discovered that the career focus she’d once sought to avoid might, in fact, be a perfect fit. “There are a lot of interesting things, a lot of troubling things, a lot of exciting things that happen in the world of disability that don’t get reported on,” she says. “I have the insight and the access and the knowledge of that world to be able to tell a story in what I feel is the right way.”
“Writing was a form of advocacy for me. There’s a lot that people with disabilities experience that isn’t so empowering. I think it’s important to find a way to share that with your own voice.”
PRIDE OF BRITAIN: Griffiths spent her childhood at her family’s bed-and-breakfast. Her parents, Jackie and Rolf, and sister, Candice, supported her in her charity work. Photos: Courtesy Tilly Griffiths (2)
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“My chair is a part of me. I want it to be the best that it can be and make me feel good. A lot of people comment on the bling on my chair. I’m like, people are going to see it, so I might as well make it something positive that they can talk about.
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“I am very focused on my appearance—my hair, my makeup, my outfit—because I feel like they’re things that are within my control. But things that are outside of my control—there’s a lot about my body and the way I show up that I can’t change—I’m very at peace with those things. They don’t really occupy any space in my mind.
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“I’ve always loved the world of media. I won a Pride of Britain award [for fund-raising] when I was 8, and around that there was a lot of media, live television. I had received support from charities, and I started out doing little speeches about what my chair meant, what I was able to do. I genuinely wanted to help other kids get these chairs.
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“I was excited about getting the master’s in journalism because storytelling has been such a huge part of my life, but also I was very excited about homing in on the data skills. To be able to translate numbers into a story that then can illustrate impacts is such an important skill.
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“My master’s thesis is about people with disabilities becoming parents, and how they navigate pregnancy and also parenthood and raising a child—what that looks like with different disabilities. It’s something that doesn’t really get talked about.”
Kali Shiloh is a staff writer at Stanford. Email her at kshiloh@stanford.edu.
