Dubai artist's message for people with disabilities: 'Keep going, never give up'

A Dubai resident has opened up about his struggles with an incurable muscle weakening disease and how he always chose a “powerful breath of life”.

Indian Sharan Budhrani, 36, tells of living with muscular dystrophy, using a wheelchair since the age of 16 and refusing to allow negative thoughts that “cripple me more than my body ever could” in a book to be released next week.

Born in the UAE, he was among the first select group of artists with disabilities to receive the 10-year golden visa for his cultural contribution to the country.

Chasing Kites plots his diagnosis at age nine, overcoming bullying and being called a “freak” and “alien” to finding his passion in art and poetry.

His journal and verse published in the book capture how he pushed past depression when he longer saw a reason to continue living and found a hidden power in being the odd one out.

“Mental strength is what I offer others,” Mr Budhrani told The National in an interview. “My body is just a vessel. I want people to know I did not give up, I just keep going. Having a disability does not mean I have no dreams.”

Marks of my wheelchair

He also wants to reach out to families who do not have relatives or friends with disabilities as the book tells of his refusal to surrender to despair despite near-death experiences.

“Life sometimes feels unbearable but it’s about trying to overcome limitations and to let people know there is more to life than your physical body,” Mr Budhrani said. “I like the word determination more than disabled because it allowed me to try to do things that were difficult but not impossible.”

Show caption: Painting opened up new avenues of creativity for Sharan Budh…

As his muscles weakened, Mr Budhrani struggled to breathe. He needed tracheostomy surgery in 2018, with doctors inserted a tube in his windpipe to help with breathing and prevent choking. He uses a speaking device that assists him to be heard.

“As my body, the muscles get weaker, we have to find a way to manage it. It was a very difficult transition after the surgery but with time I got used to it. It’s about trying to find a way through the difficulties, no matter what.”

Being part of Mawaheb, a much-loved studio that brought together young adults with disabilities to learn art, taught him new skills.

He worked on “action art” paintings where, assisted by volunteers, he poured paint on canvas placed on the floor and used remote controlled cars to create vibrant paintings.

Art became a way to restore balance with yellow and blue his favourite colours, symbolising happiness.

“I honestly believed that we have one chance while we are here on Earth, and since time may be brief, we must make an impression and leave our footprint – in my case, the marks of my wheelchair – to leave a legacy that said I was here and that it was meaningful,” Mr Budhrani writes in the book.

Not alone

The book addresses the verbal abuse Mr Budhrani suffered in school, the divisions ripped open in his family after his diagnosis and how they have healed together.

Compiled over seven years, Mr Budhrani told his story to Dutch resident Margot de Ruiter Hooykaas, by typing out words on his phone, recording voice notes and over a series of interviews.

There are plans for the book to be used in schools in India.

“This will open up conversations among young children who could read it together and understand about bulling, inclusion and also about strength,” said Ms Hooykaas, who writes under the pseudonym Farah Libardee and volunteered at Mawaheb.

The book gets its name from the freedom Mr Budhrani feels when he spots kites soaring in the sky.

“This is a project from my heart. I want to people to know they don’t need to feel pity. Yes, Sharan has huge struggles but he is a great example of how we all should live – with determination,” Ms Hooykaas said.

She has brought Mr Budhrani's story to life by speaking to Ms Budhrani’s mother, sister, nurse and art teacher.

His mother shares the loneliness she endured after he was diagnosed and the crucial need to speak openly about disability. The family moved from Pune, in western India to Dubai, nearly 40 years ago and set up a cosmetics and toiletry supply business.

“We have bared our soul in this book. I want people to know that they are not alone, we all are together. Each one has their own adversities but we have to find the strength to fight it,” said Mansha Budhrani. “Now there is awareness, people talk more so you don't feel quite so isolated. The book is important because Sharan’s words will remain, will live on after we all are gone.”

The book launch is at the Mawaheb art studio in Dubai on November 6 at 5.30pm.