She has ventured bravely where few dare to go; that has been Malini Chib's strength. Here she talks about her fight with cerebral palsy.
My first encounter with Malini was through print. She had written an article in The Times of India, about the sexual rights of the differently abled. This was perhaps two decades ago, when neither sex nor the disabled were common subjects in newspapers. I realised that, despite being a journalist and someone who believed in equal rights for every individual, this was an aspect I had given little thought to. It was the start of a new awareness, a new understanding. That has been Malini's strength; to venture bravely where few dare to go. Refusing to allow an insubordinate body to rule an alert and questioning mind. Doing more than most able bodied women, in the process.
Malini Chib's early story will be familiar to anyone who has watched a child unable to grow normally at close quarters. In her case, lack of oxygen at birth damaged her brain, making her parents and doctors fear for her life, and then robbing her of the normal milestones of physical development. Refusing to give up, her parents took her to England where they found doctors who could help get her back to as close a normal life as was possible.The fact that her brain was active and normal was a beacon of hope for both the family and for Malini herself. The fact that she studied not in some secluded little known institution where brave teachers fought to educate children with physical deficiencies but in mainstream educational institutions was a minor triumph for her parents. But Malini struggled with the fact that more debilitating than her own handicaps was the attitude of fellow students. Yet, her fight had already begun; the fight that has today helped so many understand the life and struggles of anyone similarly or otherwise afflicted.
Her presence in Mumbai's St. Xavier's, one of the city's most prestigious institutions, made it clear that being disabled was not really a handicap. If given a chance, disability could be overcome by will and achievement. Her garnering of two Masters Degrees from international universities was another alert to a society that believed that the disabled were best hidden from view to be either ignored or cosseted, as the case may be.
Campaign for rights
Taking her battle for equal rights and opportunities for the disabled to the public forum, Malini wrote articles in the press, fought actively to restructure the Bill for Right to Education, which, she pointed out, was half baked and disabled by a complete lack of understanding of the hurdles a disabled child would face. Her mother Mithu Alur set up The Spastics Society of India in 1972 to send out a message of hope and equal opportunity to the families of other children who suffered from cerebral palsy. Taking a cue from this, Malini formed ADAPT, which would campaign for the Able and Differently Abled (to live, learn and work) Together.
Malini embodies her belief that the differently abled can do almost everything. She has, in fact, fulfilled many of her dreams; one dream she holds close still is “to get married and have children. But that is not going to happen,” she adds matter-of-factly, “because in India the disabled are still treated the same way as children”.
At a reading of my book at the Oxford Book Store, in Mumbai, she organised the event, was present to welcome guests and invitees, and ensured the reading went off smoothly. “I think the best part of my job —events manager of Oxford Bookshop — is meeting authors and interacting with society. I get to meet authors, filmmakers and the intelligentsia. It was important and necessary for them to know my capabilities,” she asserts. Yet she often finds herself overlooked by shoppers, who seem to prefer not to notice her. It's a fact of life she has had to face, and she is less pained by it now. Malini's victories have been many. In 2004, she campaigned for the inclusion of the disabled in the Mumbai marathon, taking little note of the initial notice that said dogs and wheelchairs would not be allowed on the roads during the run.
But with her book, One Little Finger, Malini marks one more victory in the battle for including the disabled into normal life. The 40,000-word document, a story of tears and triumphs, of aspirations and successes that took ten years to write, has been received with awe. Her photograph on the cover, smiling from her wheelchair, invites the reader to look into her life, and of others like her, and understand it. It is one of the most significant steps taken to make the disabled less invisible, and to sensitise a normal person towards empathy, not sympathy or pity.
Literally, a finger
The book, literally written with one little finger, reads like a film script, an autobiography that forces one to open both eyes and heart. Little wonder Malini has been honoured for being a role model and for the Empowerment of Persons with Disabilities by the Ministry of Social Justice and Empowerment of Persons with Disabilities. The award presented by the President of India on December 3 acknowledges that disability is something that needs to be addressed and the attitude of the abled needs changing. It also helps highlight the life of a fighter and crusader who on her route to self-sufficiency fought a private battle at every stage. And thanks to the award many caretakers as well as disabled themselves, who cannot read, might learn of Malini's fight and find inspiration and courage from it.
Malini admits that the award had a very powerful impact. Already she has received calls from across the country. “Disabled people and parents of disabled have enquirer about me and called to share their experiences of disability”, she says. But despite the award I personally see the long road Malini must still travel to reach the summit of her battle for inclusion. The fact that the award was given on December 3, International Day for persons with Disabilities, is a symptom of the blinkers the government still wears and the lack of inclusion that still exists.
While the awards for institutions, employers and organisations that empower people with disabilities could well have been handed out on this day, the awards for role models and achievers with disabilities would be so much more meaningful and worthy had it been on Republic day when the Padma and other awards are given to the abled.
Malini Chib might have overcome her disability but India as a country and the government in particular, has yet to conquer its mental inertia where the differently abled are concerned.
Keywords: Malini Chib