UAE: This Dubai resident's new podcast celebrates people of determination

As a young girl growing up in Lucknow (India), Gulshan Kavarana always found herself drawn to people with disabilities. It may have had something do with her bond with her cousin Kersi, born four years after Gulshan, who suffered from Down Syndrome. “He was adorable, the sweetest guy I have ever known. I helped him walk. Seeing him struggle to do regular activities made me want to help anyone and everyone who suffered from this condition,” she recalls.

It was in 1971 that Gulshan’s family (her dad had passed away when she was young) moved to erstwhile Bombay (now Mumbai). In her building there lived an elderly woman who had Down Syndrome. “Whenever we passed her house, I would make it a point to say hi to her,” she recalls. The school she went to had a special needs arm and Gulshan volunteered there regularly. The friends she made stayed with her through her years of studying art at Sophia Polytechnic and even later when she tied the knot and gave birth to Janai, her elder daughter.

Gulshan’s ability to peek into their souls helped children and adults with disabilities connect with her. “And yet, when it happened to me, I turned out to be a big hypocrite,” she says. “I didn’t want a child with special needs. I wanted to be around them, but didn’t want to come home to one.”

When life changed

In 1997, Gulshan moved to Dubai with her husband and Janai, and was pregnant with her second daughter. Celebrations made way for anxiety when a gynaecologist told Gulshan that she should have opted for an amniocentesis test to rule out Down Syndrome in the unborn child. “I came home and cried a lot. I prayed to God to give me a normal child and that, in return, I would work with people with disabilities.”

Zara was born on May 5, 1997, and later Gulshan rushed to Dubai Centre for Special Needs and told them since she had a background in art, she’d be happy to volunteer there. Four months later, she was forced to confront the inconvenient truth.

Gulshan had taken Zara for a routine DTP vaccination (it was the day Princess Diana had died and Gulshan later penned a poem titled The World and I Lost a Princess). When the nurse injected Zara, she did not cry. Impressed, Gulshan hugged the nurse and thanked her. Sixteen hours later, Gulshan woke up to crying sounds. When she turned on the dim light in her bedroom, she realised that Zara was having seizures. “We were living in Hyatt Regency at the time. I called up the reception to ask if there was a doctor in the building. We found one but he wasn’t authorised to see babies and advised us to visit a hospital. By then Zara had turned limp and blue. She had nearly stopped breathing. My husband, who had been holding her, said, ‘I think she has died.’ We were numb.”

Upon arriving at the American Hospital, Zara was revived and given oxygen. The family was reassured that it was a one-off reaction post-vaccination. Gulshan continued vaccinating Zara, who, in turn, kept having seizures. Only when Zara turned two was she diagnosed with severe myoclonic epilepsy of infancy. In other words, Dravet Syndrome.

Pain, anguish, shock, denial. Gulshan and her husband went through a gamut of emotions before they decided to pick up the pieces and move on. Gulshan continued to teach art at the special needs school, where she shared her story with some of the teachers. “One of them was Canadian and she advised me to join a support group because she felt I would burn out. When I told her there weren’t any support groups, she asked me to start one,” recalls Gulshan. “In those days, I had a volunteer called Sandhya, who would work with Zara. She had two children with cerebral palsy. She told me about a psychologist in Al Noor and asked me to team up with her.

“The support group started in my living room with six families who sat on the floor and shared their stories. There were older adults with disabilities and parents, who were all breaking down. They said this was the first time they had got an opportunity to share their stories. That was how Special Families Support (SFS) was born, which completes 25 years this year.”

Art to the rescue

Even as she tried coming to terms with Zara’s diagnosis, art never left Gulshan’s side. In her special needs school, she used art to teach life skills to children with disabilities. In 2010, at the age of 46, she was roped in by Mawaheb to help such children hone their artistic talents. “We used art to understand the minds of such children. I remember showing them Yayoi Kusama’s works, where there are a lot of polka dots. When I asked the children what it means, they would say connection. There was another girl called Laila who loved hugging people. I asked her what was there in these embraces, and she would say love. They were understanding a lot about themselves through art. While I was teaching them life skills through art, they, in turn, were teaching me what life was all about.”

• This inclusive new technology is helping those with hearing impairment to ease communication