Disability advocate Shobhika Kalra is nursing a throat infection on the day of our interview. It's unfortunate timing, coming just a day before she's due to launch her memoir, The World Wasn't Built for Me, So I Built My Own, at the Sharjah International Book Fair on November 11.
But the 36-year-old is in good spirits. It's an attitude that has carried her through much of her life, even as Friedreich's ataxia, a progressive neurological disorder she was diagnosed with as a teenager, has gradually taken hold of her body.
Now with her speech severely impaired, Kalra remains a tireless campaigner for disability access in the UAE, where she has lived since she was four. Through Wings of Angelz, the volunteer initiative she founded with her sister Ruchika in 2014, she has helped make more than 1,000 places across Dubai wheelchair accessible, giving people with disabilities greater freedom and independence.
“I actually never thought of it as a very difficult life,” Kalra tells The National. “My life is very different. Different does not mean difficult.”
Her new memoir chronicles her inspiring journey, from the challenges of growing up with a condition that progressively robbed her of her mobility, to her determination to live life on her own terms. It's not just about overcoming physical barriers, it's a story about resilience, gratitude, self-acceptance and the importance of finding happiness in whatever life throws at you.
A life changed at 13
Kalra was diagnosed with Friedreich's ataxia when she was only 13 and a sprightly teenager who had dreams of becoming a dancer.
The rare inherited disorder damages the nervous system, progressively affecting balance, muscle co-ordination and movement. As it advances, people with the condition can experience increasing weakness in their arms and legs, difficulty walking, impaired speech and problems swallowing. It can also affect the heart, with some patients developing diabetes or hearing and vision problems.
There is no cure Friedreich's ataxia, although treatments can help manage symptoms and, in some cases, slow progression.
But as Kalra began coming to terms with the physical changes brought on by her condition, she also had to contend with something perhaps even more painful: the changing attitudes of those around her.
“My life changed completely,” she recalls. “My friends stopped speaking to me. People who used to keep praising me all the time, they stopped acknowledging me. Everything changed, you know.”
She was too young, she says, to fully understand what was happening. By 15, when her physical abilities began deteriorating, she says she “felt broken”.
“But somehow I knew I just had to keep going,” she says.
Her family, particularly her mother and elder sister, provided crucial support. Kalra describes her mother as strong-headed and someone who encouraged her to be independent. As her friends drifted away, her sister, Ruchika, became her closest friend.
It was also around this time that she began to realise the world around her was not designed for people with disabilities. At her school in Abu Dhabi, her classroom was on an upper floor, accessible only by stairs. Despite her parents approaching the school, she says they were told the classroom could not be moved to the ground floor.
It was another experience, during a visit to a cinema in India with her sister, that would help turn that frustration into action.
Kalra discovered there was no accessible route to her seat. Four strangers had to carry her up the steps.
“I found this very disturbing,” she recalls.
When her sister complained, the cinema manager suggested there were not enough wheelchair users to justify making the venue accessible.
But the sisters saw the problem differently.
“It's not like there aren't people in wheelchairs,” Kalra says. “They don't go out because of no accessibility.”
That realisation helped inspire Wings of Angelz, an volunteer initiative dedicated to making public spaces more accessible.
Changing the UAE, one ramp at a time
Founded in 2014, Wings of Angelz began identifying places where wheelchair users struggled to get around and campaigning for ramps to be installed across the UAE.
It was often painstaking work, requiring Kalra and volunteers to approach businesses, explain why accessibility mattered and repeatedly follow up.
“I started contacting them. I kept following up,” she recalls. “Because not every person thinks that a ramp is very important.”
One of her earliest campaigns focused on Dubai Metro stations.
Although the stations themselves were designed to accommodate wheelchair users, reaching them was sometimes a different matter. Pavements and surrounding walkways were mostly inaccessible, leaving passengers dependent on strangers for assistance.
Kalra, who would take the metro daily to her university, recalls having to rely on someone to help her negotiate the pavements.
She recalls persuading a Roads and Transport Authority official to visit a station with a team of engineers to see the obstacles for themselves. After inspecting the area, he apologised and asked her to identify similar problems at other stations.
Kalra and her team's efforts eventually expanded beyond transport infrastructure. By 2019, Wings of Angelz had helped secure more than 1,000 wheelchair ramps, a milestone that brought Kalra recognition for her advocacy.
Accessibility across the UAE has improved considerably, she says.
“I think it's much, much better now,” she says.
But physical access, she has come to realise, is only part of the challenge.
“In the beginning I thought improving accessibility will improve everything,” she says. “But I slowly, slowly realised there are so many other aspects … that are equally important, and I feel like accessibility was just one bit of it.”
Her focus is increasingly shifting towards inclusion, particularly employment opportunities and greater visibility for wheelchair users.
She believes that when people with disabilities are largely absent from workplaces and public life, society is less likely to recognise the barriers they continue to face.
Putting her life into words
When Kalra decided to write her memoir about a year ago, she says she wasn't quite prepared to revisit the painful experiences that had shaped her life – returning to memories of isolation, disappointment and the physical changes she had endured over more than two decades.
There were days when the process became overwhelming, she says.
“It was a very emotional writing process. It wasn't very easy to write the book.”
Yet she hopes sharing those experiences will encourage readers facing challenges of their own.
“I think the main thing about life is to keep going on,” she says. “And if they are going through something very different, if they are facing any challenge in life, don't give up because it's very easy to give up.”
Asked what she wants people attending her book launch to take away from her story, her answer is just three words: “Never give up.”
Living in the moment
Friedreich's ataxia is progressive, meaning Kalra's physical abilities may continue to deteriorate as she grows older. The rate of progression varies, and there is no way of knowing precisely what the coming years will bring for her.
When asked what doctors have told her about her future, and what life might look like five years from now, she does not dwell on the uncertainty.
“I don't know actually what my future is, but until now I think I'm living pretty well,” she says.
She is also proud of what she has accomplished, from changing the way public spaces accommodate wheelchair users to sharing her experiences through a memoir.
“I think I'm very happy with what I've done. I feel very proud.”
But what about the dreams she has yet to fulfil? Does she still have ambitions she hopes to achieve?
“I just want to keep doing my best every day,” she says.
“Because dreams may come true or they won't come true. But that does not define who you are.”
And while the disorder may continue to affect her body, she is determined not to let an uncertain future overshadow the present.
“I think it's very important to live in the moment, enjoy everything you can and to do it now.”
