By the time Shani Dhanda was just 14 years old her legs had broken six times. No trauma, no incident, just the steady disintegration of her bones courtesy of osteogenesis imperfecta, the rare genetic condition she was diagnosed with as a child.

Only one in every 15,000 people in the UK are born with osteogenesis imperfecta, which is characterised by bones that break easily and a small stature. Dhanda is 3’10”. “It’s the most obvious thing that people notice about me,” she says. Her size, and the unpredictability of her condition that gives no warning as to when a bone might snap, mean that Dhanda is constantly making adjustments to her life. “From a young age I learnt how to live in a world that really wasn’t designed for me,” she explains.

But Dhanda never wanted her disability to be a restriction on her life. She studied event management at the University of Wolverhampton and worked full-time in events for six years before side-stepping into the world of entrepreneurship. A keen and passionate traveller, she has visited 28 countries around the world, including a life-changing solo trip across India where her family originally hail from.   

Today, Dhanda is the brains behind the Diversability Card, the first discount card for people in the UK with disabilities, launching soon with major retailers on board. She’s also the founder of The Asian Woman Festival, the UK’s first event for cultural and political coverage aimed at Asian women, slated to be held in March next year.

“I don’t think of living with a condition or impairment as a barrier, I’m not disabled by my condition,” Dhanda explains. “I’m disabled by barriers made by societal or attitudinal bias… Living with an impairment or condition is just another characteristic of me. Like I am a woman, I’m Asian, and yes I live with a condition. To me that’s how simple it is. But other people don’t see it that way.”

Both the Diversability Card and the Asian Woman Festival arose out of one of the many conversations Dhanda has had about the importance of representation in making real change. “One in five Brits are disabled, but that is not represented in anything,” Dhanda says, aside from the Paralympics. “And that only happens once every few years,” she adds. 

Though she has noticed more representation of disabled women in pop culture, in particular, the employment of disabled models in magazines, Dhanda wants more. Representation, she explains, will help open up avenues of dialogue around disability that are simply not happening currently in the UK. “We have a society of people who don’t know how to talk to disabled people,” she explains.

It’s why the Diversability Card is so important, offering discounts to counteract the, on average, additional £570 in expenses disabled people pay every single month. 

Or Dhanda’s work as an ambassador with Scope, the national disability charity, where she recently shed light on the barriers of stigma in place that prevent disabled women from getting employment. (Disabled people have to apply for 60% more jobs than able employees. Dhanda herself experienced this at 16 when she applied for hundreds of jobs, receiving no response until she removed the information about her disability from her resume.)

The Asian Woman Festival, too focuses on representation. “All we have [as Asian women] are Asian wedding fairs or events where you can buy Asian clothes, but what if you don’t want that?” Dhanda says. “I thought, if there’s nothing out there, why don’t I create it?” 

When the event kicks off in March next year it will be the first of its kind for Asian women in the UK. “The theme is identity,” she says. “Of being an Asian woman and how you navigate your heritage with living in modern Britain. I’m really excited about all the great minds that are coming together.” 

It’s a real pinch-me moment for Dhanda. “I never thought that at 31 I would be doing all these things,” she muses. Her mother, she explains, used to cry a lot when she was a child, having been told that Dhanda might never talk or walk. Now, Dhanda is one of the most vocal and respected disability activists in the country, improving lives with her many schemes and ideas. 

“I’m driven by the impulse to make things better not only for people now but future generations,” she explains. Though she had a loving and well-supported childhood, she’s aware that this isn’t always the case for disabled children. “The Asian community has a very low perception of disability, it’s like fighting two battles,” she says. “I never want another Asian disabled child to grow up in a community that negatively perceived disability.”

Her message for young women with disabilities is simple: “There are no limits and you can do whatever you want to do,” she says. “We live in this world of social media where you can create your own noise, if you’re passionate enough about it. You’re not defined by your circumstances… You always have options in life, you just need to have courage to take them.” 

The Woman of the Week series is part of Stylist’s Visible Women campaign, dedicated to raising the profiles of women who are making a difference to society and to celebrate their success. See more Visible Women stories here.

Images: Supplied