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

How Gulshan Kavarana, who has recently launched a podcast for persons of determination, became the voice of reason in the special needs community

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.”

Following her work in Mawaheb, Gulshan has been closely working with the popular Emirati artist of determination Abdulla Lutfi and has mentored him for the past several years.

Today, she also has her own podcast, PODcast by Gulshan Kavarana, where she regularly features people of determination and asks them to take listeners and viewers through their journey. The process, she says, is simple. “I sit with them. We don’t rehearse. I don’t edit any of the videos. I want to hear what they have to say without editing or preparing them in advance.”

Influencing a community

With her journey, Gulshan has also become an important voice of reason in the special needs community. If parents of children or young adults with disability listen to her, it is because they know that she has gone through something similar. “I have a lot of moms coming to me and saying they feel they are horrible mothers. When I ask them if it’s because they have wanted their child to die at some point, they get teary-eyed, saying, ‘How can I think like that?’ There had been times when I held Zara in my arms and tell her, ‘It’s okay if you want to go. Don’t suffer anymore.’ It’s the hardest thing to say, but it’s equally hard to see your child suffer. My simple advice to parents of children with special needs is that please enjoy your time with your children. Remember, you are not a therapist or a doctor. Let them do their job and you do yours,” she says. “Recently, a mother of an autistic son who I happen to know went travelling with him. She enjoyed it so much because she got this time to bond with him. This is what SFS has done — helped parents understand their children.”

Before the joy, though, there is a cloak of grief that envelops a family. Gulshan recalls the case of a member of SFS who had a really difficult child with special needs. The father would always hold the son’s hand lest he ran away or hit someone. “I only asked him to let go of his hand, and let him be,” she remembers. Years later, this member walked up to Gulshan to thank her for saving his life. That simple sentence had not only reassured him but also given him a chance at leading his own life.

Having worked with many children and adults with special needs and interacted with families, Gulshan still cannot be completely sure if her relationship with Zara has evolved differently over the years. That is because Zara herself has grown into an adult with minimal needs. “She does not like attention. If I go and sit next to her, she walks away. She is really content with herself,” says Gulshan, remembering a time when someone did ask her pointedly if, in helping so many others, she was keeping Zara and her needs on a backseat. “It did hurt me at that time. Zara does not need me to sit with her and do anything. She has five anti-epileptic drugs in the morning and five at night. She is so tired all the time that she is hardly awake. It takes one or two days for her to recover from seizures. It is a cycle we as a family go through. We all take turns to make Zara’s life comfortable. She likes massages, so we get someone to come home and massage her. She likes street food, so we take her out once a week to eat out. Zara does not show any kind of emotion. She does not smile, she does not laugh, she does not cry. But I think she is happy.”

anamika@khaleejtimes.com

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