A British actor, touring the world for a film on siblings living with Down Syndrome, meets brothers from Mumbai to find new protagonists and friends
Sachit and Krish Matreja with their five-year-old labrador Pari. They live at their Lokhandwala residence with their homemaker mother and father, who works at TCS. Pic/Datta Kumbhar
When we meet Krish Matreja at his Lokhandwala residence, he greets us with a handshake. But his brother, Sachit, does a namaste. It is 4.30 pm and Sachit, 22, is readying to test his new pair of sneakers at the evening play session. "This is his time to go play on the swing. But, we had asked him to wait since you were coming over to meet us," Krish tells us. The brothers settle into a couch, each taking their favourite side, beginning to tell us about a new project that is cause for excitement, a documentary that discusses what it is like to have a sibling with Down Syndrome.
Handsome, a film by Nick Bourne, a British actor and support worker for adults with special needs, is being made in collaboration with filmmakers Ed White and Luke White. They have been travelling the world since July 2018 to meet brothers and sisters who live with the condition. Down Syndrome is a genetic disorder that causes a distinct facial appearance, intellectual disability and developmental delays. Nick's younger brother Alex Bourne is a Down patient and is often his co-traveller. Born in Witley, England, 27-year-old Nick says, "I was around 12 when I realised that he was different. Back then, Alex would spend some time with friends from the special needs school but mostly be around mum and dad. This continued for years. I went on with my life and did a bachelors in acting."
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Last year, however, a classroom test assigned to Nick by his acting teacher proved to be an eye-opener. "She asked me the one thing I'd want to do that would make me happy. The same question was thrown at me in different ways, and it suddenly dawned on me that it was being with Alex that made me truly happy." Nick first thought he would write a book on his relationship with Alex. But his mother convinced him to make a film. "We sent out word on social media and funds started pouring in. A petition on a crowdfunding platform got us 10,000 pounds," Nick says.
(Left) Filmmaker Nick Bourne was accompanied by his brother, Alex, to the various cities he travelled to shoot his documentary, Handsome
The team met their first set of siblings on the South West coast of England in July 2018, then a pair in New York city in February 2019. Their Mumbai stop came this April. The Parents of Down Syndrome (PODS), a non-profit in Mumbai, led them to the Matreja brothers. Interactions with Nick had Krish realise that facilities for special needs adults were scarce in New York, when in fact, Mumbai's NGOs and playgroups were active and organising a host of activities. Krish, an engineering student at Sardar Patel Institute of Technology, chose to collaborate in order to do his bit to raise awareness about the scope of mental disability. He continues to hit a hurdle when he explains Sachit's predicament to his well heeled friends. "I use the Taare Zameen Par reference, and tell them that Sachit, like Ishan Awasthi, suffers from delayed development, but of course of a very diferent kind."
Nick and Krish agree that the film is special because much of the documentation that exists concerns parents caring for Down Syndrome children. "But there is so much to say about how two children of similar age grow up with the disorder," Nick says, admitting that he used to resent his parents because Alex got "too much attention". Interestingly, Sachit and Alex both have the Trisomy 21 type of Down Syndrome, a condition that occurs when there are three, rather than two, number 21 chromosomes present in every cell of the body. Severe developmental delays affect learning abilities. This means that at 22, Sachit is just about managing to pronouce words and write with the help of a special needs teacher who visits him for two hours daily. "I also enjoy baking cupcakes," Sachit, who had so far been quietly listening, says shyly.
Krish says that Sachit can be stubborn sometimes. "We disagree everytime we go out to eat. He needs his plain, simple food, like a dosa. I enjoy the occasional burger, which I do when I go out with friends. He prefers to stay at home and eat. We argue like any regular siblings, our memories of growing up are the same too, but there is a difference — brothers like Nick and I have to grow up faster to be able to take care of Alex and Sachit." Nick had to put his acting career on hold to be able to make this documentary, one that he dedicates to Alex. Krish knows he has had to make compromises. Other kids got dropped off to school, while he made his own way there.
His father would be at work while his mother had to be with Sachit. The ill feelings gradually faded. Nick is in discussions with Netflix, and hopes that the film releases by next year. Hope is a personality trait Nick has had to hone. "Alex needs to learn to cook. But very recently, he learned to shower himself." To this, Alex quickly reacts, and tells us, "But I like watching cinema and music gigs."
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