Meet Cienna Ditri once and you might think she has it all figured out, confident and composed, always in motion. She travels, surfs, and leads a nonprofit with ease. What looks effortless, though, took years to build.
It all began in childhood when people told her she was “too healthy to be disabled,” unaware that she lives with periodic paralysis, a rare condition that causes sudden episodes of muscle weakness. The attacks feel, she explains, “like trying to move through cement.”
As a kid, she loved sports, dancing, even though her muscles often felt weaker than others’. She also spoke differently from her classmates. “I was severely tongue-tied, so a lot of my letters I couldn’t pronounce correctly until I had surgery in second grade,” she says.
Doctors dismissed her symptoms for years until she was finally diagnosed in her early twenties. Today, she manages the condition through medication and careful planning. Cold weather remains a major trigger, but heated gear and an electric wheelchair keep her moving. The condition has changed how she lives but not how she defines herself, and over time, living with something few understood naturally evolved into advocacy.
“I didn’t just wake up one day and was like, oh, I’m gonna do this,” she says. “It just kind of happened naturally.”
As she grew older, that desire to express herself turned into small creative projects that weren’t related to disability. “I loved Steve Irwin,” she laughs. “Me and my neighbor started our own little scouting group. We had a website with animal facts that the local school district used.”
A few years later, while in college, that same instinct to share reappeared when her doctor recommended a service dog to help live more independently. Cienna didn’t yet know she had periodic paralysis and Opie, her first service dog, was trained to assist with the unexplained symptoms she was already living with, like sudden weakness and fatigue. “My disabilities were really invisible,” she recalls. “So I thought my classmates would just wonder why I had this dog with me.” To explain, she created an Instagram account for Opie, sharing small moments of how he helped her every day.
“I couldn’t share about what Opie did without sharing about why I needed him,” she says. “And it just grew.”
Soon, people began responding. “When I share about traveling solo, I get messages from people who say, ‘I never imagined I could do things like that.’” It made her realize how limited many perceptions of disability still are. “We can love fashion, we can travel, we can live very full lives,” she says. “We’re not the stereotype we grew up seeing on TV.”
As her condition became visible, so did the assumptions around it. For Cienna, independence means movement — the freedom to go, to travel, to keep moving forward. She grew up surfing and thought that part of her life was over when she began using a wheelchair. But on her thirtieth birthday in Puerto Rico, she tried adaptive surfing for the first time. “It changed my life,” she says. “I was able to do something I loved again.”
“People in wheelchairs can surf too,” she says. “It might look a little bit different than you imagined, but it’s still surfing, and it’s still fun.”
That sense of community led Cienna to an unexpected place — the presidency of the Periodic Paralysis Association. “When I joined the board, I didn’t think I’d end up president,” she says.
In 2024, while serving as president, she attended the creative conference Trending Up. “They’re the most accessible conference I’ve ever been to,” she says. There, she met other disabled creators who quickly became close friends. “Being surrounded by people like me was life-changing. We could just create, talk, and exist. Nobody had to explain anything.” Next year, the association launched the first World Periodic Paralysis Day, lighting up the Chicago skyline and bringing organizations together for the first time. She also started regional dinners across the U.S. to help more people connect and share their experiences.
Beyond building community, Cienna also works to make accessibility real in people’s everyday lives. Much of her focus is on healthcare, especially women’s health, a topic she first discussed while working with the Muscular Dystrophy Association and Paralyzed Veterans of America. “Most offices just aren’t accessible to us,” she says. “Many can’t transfer to an exam table or reach a mammogram machine set too high, so we’re not getting screened for things that are preventable.” Speaking about these gaps helped her see how awareness itself can start change.
Cienna sees accessibility and independence as inseparable — from doctor’s offices to airports, it’s all part of the same fight. Traveling on her own often reminds Cienna how rarely people expect disabled travelers to be independent. “It happens all the time,” she says. “People assume I can’t do things for myself.” She recalls one airport check-in: “I had everything hooked to my wheelchair, ready to go. The woman at the desk said, ‘You can’t do that by yourself.’ I told her, "Thank you for your concern, but I know what I can do.” She smiles. “Maybe assume that I can, and if I can’t, I’ll let you know.”
When asked why people react this way, she doesn’t hesitate. “It’s a lack of education,” she says. She says encounters like that are symptoms of a bigger issue, how rarely people see disability represented accurately.
“People aren’t used to seeing disabled people in their everyday lives, and when they do see us on TV, it’s not even us, it’s someone pretending. So they form the wrong ideas and carry them around.”
That lack of representation goes far beyond television and into industries that shape how we see beauty. At New York Fashion Week, a lifelong dream for Cienna, she didn’t see a single disabled model on the runway. “They even had to get a stair climber so I could access the building,” she says.
Still, she believes representation is improving. “There’s more diversity now, like Marissa playing Nessarose in Wicked , a wheelchair user playing a wheelchair user. It shouldn’t be rare, but it still is.” While looking for a maid-of-honor dress, she once noticed a model sitting down in the photo, not in a wheelchair, simply sitting, and realized how unusual it was to see clothing shown that way. For her, small moments like this show that change, though slow, is possible.
Seeing these signs of progress makes her reflect on what change means on a personal level, that it often begins with how we see ourselves.
“Learning to love yourself and your body isn’t a quick decision,” she says. “It’s something you choose every day. Every scar, every treatment, it all tells a story of how I got here.”
Cienna Ditri’s story is about belonging, about living in a world that still expects her to explain herself and choosing to keep showing up anyway. She raises her voice so people learn to listen differently, to assume possibility before limitation. Her message is quiet but unwavering: assume I can, until I tell you I can’t.
