Last Sunday, among hundreds of Mumbaikars who participated in the Mumbai marathon was a woman on a wheelchair. Malini Chib was smiling as she was being helped by Kalki Koechlin. Kalki and Malini have grown fond of each other, with the former having spent plenty of time with the latter to understand the life of someone diagnosed with acute cerebral palsy as a child. In her forthcoming film Choone Chali Aasman, previously titled Margarita with a straw, directed by Shonali Bose, Kalki will be seen as a young woman with cerebral palsy.
“Every year we take part in the Mumbai Marathon,” states Malini. This ‘inclusion’ didn’t happen without a struggle. “We were first excluded and were grouped with dogs as they said ‘dogs and wheeled vehicles not allowed’. Then the ADAPT Rights Group (ARG) that I set up fought for our inclusion.”
The lack of inclusion has always been an issue for the differently-abled. This year’s Hyderabad Literary Festival will set a precedent by attempting to be inclusive. We ask Malini if she has been a part of lit fests in other cities and she recalls attending the Jaipur Literature Fest and finding it inaccessible. “Being a disabled woman, I was accompanied by two other women — my interpreter and my caregiver. There weren’t many who helped us there. There were many stairs and there was no way I could have brought my electric wheelchair. In my electric wheelchair, I am free. I am my own person. I don’t have to depend on others.” For a lit fest to be inclusive, she feels people’s attitudes, universal design, acknowledging disabled authors and having disabled-friendly toilets are essential.
Malini’s book ‘One Little Finger’ (Sage Publication) is a moving and inspiring account of a child with a crippling disability but unimpaired cognitive skills, struggling to find her identity. The book traces her journey through her experiences of being a part of mainstream schools and colleges and founding Able Disabled All People Together (ADAPT) Rights Group. “I like writing and over the years, I’ve written many short stories on my everyday experiences on a wheelchair. My life has not restricted me in any way so I wanted to share it with other people,” says Malini, on her decision to share her story with the world.
The book was published in 2011 and since then, she has had people wanting to know more. “They wanted to know where I got my wheelchair, where I hired a care-giver and many other things. I’ve been told ‘it’s a precious book and an inspiration’ though I don’t think so,” says Malini.
At the lit fest, she hopes to “speak a little on the fact that we, the disabled, are readers too and need publishers to recognise that and provide books in accessible formats as well as how it fits into the concept of universal design. Of course, I shall speak a little about my book.”
Choone Chali Aasman is scheduled to release in India this summer and discussing the film, Malini states, “The filmmaker (Shonali Bose) is my cousin and grew up with me. The film is not my life but about a girl like me, with cerebral palsy. Kalki has enacted the part well. We are good friends. She made it a point to understand my speech. We hang out together a lot.” Malini attended the film’s premiere in London and fondly recalls a reception being hosted in her honour by the Tata Consultancy Services in London. She declares that she loves the film, more so because it does not only focus on the person’s disability.
(Malini Chib will take part in the session ‘Life in Progress: Personal is Political’ chaired by Anju Khemani on January 26; she will also be a part of the panel discussion ‘Universal Access to Print and Literature’ with Raghavendra, Satish Peri and L. Subramani, author of ‘Lights Out’ in which he discusses his journey after being detected with Retinitis Pigmentosa, which rendered him blind. This session is on January 26)