Documentary tells inspiring story of Kerala youth with brittle bone disease

The documentary ‘Jeevanulla Swapnangal’, directed by Ritwik Baiju, tells the story of Jeevan B Manoj, for whom disability has never been an obstacle in conquering heights.
Documentary tells inspiring story of Kerala youth with brittle bone disease
Documentary tells inspiring story of Kerala youth with brittle bone disease
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The posters were printed much earlier. Stories about the documentary screening were in the papers. When the audience walked into the Kalabhavan Theatre in Thiruvananthapuram for the first screening of his film Jeevanulla Swapnangal, Ritwik Baiju stood among the crowd, nervous like any director would be before a premiere. He had wondered when he made the documentary on Jeevan B Manoj, a person with Osteogenesis imperfecta or brittle bone disease which results in fragile bones that break easily, how to keep an audience interested after the first few minutes. The posters and the papers had told half the story – here is 27-year-old Jeevan, working as a software engineer at Microsoft in Bengaluru, his disability never stopping him at any point in his life. 

He needn’t have worried. At Kalabhavan, the audience sat glued, not stirring at all except to clap for a scene when Jeevan sits coolly on his wheelchair and speaks about organ donation. Or perhaps to secretly wipe a tear when his dad speaks of the moment that he locked eyes with Jeevan for the first time, 27 years ago, and knew he’d go to any lengths to keep the child happy.  

“None of that was scripted. I asked the same questions to Jeevan’s dad (Manoj Balan) and mom (Thara). They spoke so beautifully I didn’t know what to cut,” says Ritwik, sitting at Jeevan’s house in Thiruvananthapuram. His mom is from the capital city and is friends with Ritwik’s mother, writer KA Beena. Beena once wrote about Jeevan when he got admission at the TKM College of Engineering for a Sunday paper. Back then, Jeevan thought he wasn’t ready for a documentary. “I felt I had to achieve something before a film was made on me. But later in Bengaluru gatherings, when I realised that my story could help other people, I thought why not,” Jeevan says.


Jeevan and his family at the screening

He grew up in Kollam, where his dad hails from -- Mayyanad. That’s where he went to school and later, college.

“It wasn’t easy for me, preparing for the entrance exam after studying at a village school in Kollam. But then it was arranged for me to have special classes at Time coaching institute thrice a week, and that’s how I cleared the exam,” Jeevan says.

Not that he isn’t thankful for his wonderful teachers and classmates at school. He sits near Sumangala teacher in the documentary and talks about how she had made sure he was comfortable in class.

“For me, the disability was something I was born with, it was my normal. So I can’t remember a point of realisation of my condition. And my mother made sure I was prepared, before going to school, that there could be insensitive comments from classmates. But there was nothing like that. My friends have always been sensitive,” he says, smiling.

Jeevan’s dad says in the documentary that his son is always cheerful. And you wouldn’t find him otherwise in a single frame – be it about the serious matters of life, be it with his friends or family, there’s always a smile on Jeevan’s face. And you can spot it when you speak to him. He tells you there’s been no compromises in life, because others who support him would make the little compromises he’d need to get through – like friends lifting him across a bunch of stairs or the taxi driver who carries him to his wheelchair or his dad who’d sit and fix the wheelchair he had made for his son so many years ago, one that Jeevan refuses to leave behind for a more advanced one.


Jeevan with his family and Ritwik

Jeevan’s little brother Madhav too appears in the documentary – another TKM student, about to graduate. You can spot the typical ways of brothers when Jeevan doesn't stop whacking his brother for birthday bumps, both laughing their hearts out.

But then life began for Jeevan with tears – when other babies cried after leaving their mother's womb without tears, Jeevan cried with pain – he had fractures on his hands and legs. Growing up, he would get fractures and would cry through the night. “He couldn’t sleep in the night because of the pain, when the broken bones rubbed against each other. We knew even as he begins to sleep that he would wake up crying any moment. It would last for days. When he finally slept peacefully, that'd make us so happy,” Thara says in the film.

Jeevan’s favourite part in the film is when he talks about organ donation -- he has decided to be a donor, after having an eye injury and realising that a big percentage of blindness can be overcome if there are enough donors. “Somebody once told me that if you donate your organs in this life, you will be born without those in your next life. By that logic, I probably donated all my organs in my previous life. If that is the case, I am quite proud of that life,” he says, and the audience clapped at that unscripted scene that had even surprised the director.


Ritwik and Jeevan

“There were so many scenes like those. There is one where Jeevan talks about writing to the owner of Nike shoes and getting a response… but we couldn’t include all of it. My editor Aravind Manmadhan had a tough time deciding what all went in,” Ritwik says. They had both worked together for Shyamaprasad’s award-winning feature, A Sunday – Ritwik as the associate, Aravind as the editor.

Jeevan, the man with many interests, can be seen discussing the camera with Aswin Nandakumar, the cinematographer, in a film. With the long fingers of an artist, he can draw too and skims through his sketchbook for the film. You can understand Ritwik’s dilemma, seeing how Jeevan does not stop surprising you – in one frame he is playing the guitar and then the harmonica, in another, he is doing pushups and lifting a pair of dumbbells. On an Instagram video Jeevan uploaded, he says that someone had once asked him why he wears shoes when he can never walk. “Wearing shoes is part of the whole grooming process. I see absolutely no reason why I should make compromises in it just because I was born with a disability,” he says, and in those few words you can read his whole attitude to life. No whys, only why-nots.

His dream is to be one hundred percent independent, so that his parents – who now take turns to go to Bengaluru to be with Jeevan – can go back home to Kerala and settle down. Bengaluru’s disabled-friendly nature makes it a lot easier for Jeevan, who can navigate his way through lifts and ramps and disabled-friendly taxis. It was Jeevan who house-hunted online and found a new place to move to. You can pretty much imagine Jeevan moving smoothly ahead towards his dream. A photo he uploaded on Facebook, with his hands holding dumbbells on the floor and his legs raised, is captioned: “They said I will never stand. Well, do handstands count?” It does, Jeevan, it really does.

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