'Different does not mean difficult': UAE disability advocate Shobhika Kalra launches memoir

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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…

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.”

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.

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