25 March 2011

One Little Finger by Malini Chib

A glamorous crusader

I saw Malini’s book at a friend’s place in Madras last month, read the first page, and was thoroughly captivated. And I was tickled by the title. I had met Malini in January 2009. She had told me about herself, and one of the things I remember her saying was that she has two separate Masters’ degrees and had typed both theses with just one little finger. So I knew what the title meant: it was a tribute to a certain very special finger, and quite characteristic of Malini’s wry sense of humour.

Malini has Cerebral Palsy. I enjoyed meeting her and found her to be an extremely emotional person – enthusiastic, independent, full of life, very good looking, a little impatient, and irrepressibly eager to try out new things. During the course of the day we spent together, her witty responses had me laughing a number of times. And she had a coy look on her face when her mother, Mithu Alur who founded Spastics Society of India, told me that Malini was presently working on her autobiography. Well – here it was, and I ordered a copy as soon as I got home.
One of the best things about this book is that it is the inside story of a struggle that many face – but very few are gifted with the ability to articulate. And Malini is not just telling us a personal story, she is also able to comment on the difficult situation she has faced all her life and conceptualize and analyze various facets of it. Not only that but she make jokes about it too. For instance, she tells us that as she was growing up, the world viewed disability through what is now known as the “medical model” which means that disabled people were considered as medical cases and isolated accordingly. The prevailing view, however, is the “social model” which applies a “rights-based approach” and considers disability as a social issue; that we are each dependent on others at some level – and that each of us must consider it a simple responsibility to include others of varying ability in our lives. But when her friend Varsha Hooja helps her onto a bus in London and a co-passenger gushes, “You are a wonderful person. God will bless you,” Malini and Varsha secretly laugh and define a new “medical charity model”: anyone helping the disabled will be blessed!

In this book, Malini tells us the story of her life, starting from her birth in Bombay to an educated family, privileged and well connected.

When her parents realize that their child has special needs which will not be satisfactorily met in India, they move to London. Over the years that follow, her life is divided between Bombay and London. Wherever she is, we observe that she has the intelligence to analyze her problems and look for solutions to them. When she joins college at St Xavier’s in Bombay, she agonizes:
Did I have my own personality? Was I just another disabled girl who needed things done for her? I knew that I was different and trapped in a dysfunctional body, but did others realise I had a spirit and a mind separate from this body? My body did not work like others, but did they realise that my mind was normal? Did they consider thinking that my desires were just the same as theirs?
When her classmates plan to go for a movie together, it doesn’t occur to them that Malini wants to go too. But instead of just sitting there feeling sore and left out, she invites herself along and soon enough they learn how to help her along and get used to involving her in their plans.
It struck me that by having the courage to maintain this approach, Malini has always been able to influence people around her towards inclusion, even before she became the activist that she now is. However, the environment was full of barriers. The classrooms at St Xavier’s had a raised strip at the doorway which made it a struggle for a wheelchair to cross. When she got a job at Bombay Times for a short period, the canteen was out of reach so she could never join her colleagues for a cup of coffee or lunch. In India, even toilets for people with disabilities were not accessible.

I liked Malini’s observations – for example her experience of the education system in India as one “which teaches students to be like sausage machines rather than thinkers of the future.”

At the special school she attended in Bombay, children were praised for no reason and not challenged or driven to learn and this proved to be a handicap too. She writes, “My writing was affected. I think one of the fundamental concerns for education for disabled people is the communication output.” This surprised me because it sounded like the most basic, simple common sense. Apparently not!

And she later comments, rather poetically, “To me, communication is like water, the essence of life. What could I do without fluent speech?”
Of her pain and isolation she philosophically remarks: “My experience is that most people cannot deal with other people’s trauma. One’s trauma is one’s own and should not be mentioned unnecessarily to others.”
As she got ready to bid goodbye to her parents as they set out for six weeks in India, leaving her in London, she writes,
Bye’, said dad as he kissed me, adding ‘this is what you wanted, so don’t cry’. Men do not understand why women cry.
A mixture of emotions passed through them. I was happy to be finally on my own, but sad that my mother and dad had left. We did so much together. We were more like friends.

Her struggle with inclusion and access reduces – though it does continue in different ways – in London where she has a series of happy stints. Here she experiences independence for the first time using technology to make her mobile and able to communicate with the world through different appliances. And at Berkeley, where she meets a large number of disabled people leading normal lives, it opens new worlds to her.

For Malini, a simple outing that most of us would take for granted becomes a grand expedition! We share her excitement and tremendous sense of achievement when she finally goes out all on her own for the first time. And we feel her joy when she travels with friends who enjoy her company. At Notre Dame in Paris, Malini is moved by the atmosphere and writes, “I felt a spiritual presence encircle me. I prayed, and thought about how lucky I had been in life.” And later, when she learns to give lectures using PowerPoint, she comments sardonically, “I absolutely abhor the sound of my monotonous voice. I wish I had a sexy, husky one with a clipped Oxonian accent, but I guess one cannot have everything in life.”

I found this book entertaining; I admired the writing style, enjoyed looking at the photographs and smiling at the humour. I was happy to have from this book the endorsement of the belief, implemented in my own life, that a professional attendant is more conducive to a life of independence and dignity than when the disabled person is cared for just by family members.
But there was something about this book that made me angry and that was its very large number of editing and proofreading mistakes. Malini, being disabled is deserving of more protection than people who have all their functions – and as a talented writer, her creative output deserves better housekeeping. On the very first page of her book she is delivered by a paediatrician! What a novelty! Then, mama is explained on page 29 as a term used for mother’s brother but mashi was used ten pages before and repeatedly through the book – but no one tells us what that means. Why do we have “Bakers” Street instead of Baker Street, “I regaled the incident” (instead of recounted); sooth instead of soothe; a sentence as meaningless as “pasta was considered to be a wholesome, student-friendly of meal”; any number of misplaced apostrophes as in “as other’s often tell me” and bumbling capital letters as in "university Bookshop"? Worse still, towards the end of the book, even the editing gets careless and leaves us with phrases like
As my mother and my aunt were getting older, mashi only suggested that I should have a separate carer
… she noticed a considerable amount of bags at the back of my chair.

This book is an excellent production, with good aesthetic values. It has a good story, a beautiful cover, and is well written. To be strewn with careless mistakes – I’ve listed here only a few that I noticed, and I wasn’t even looking – is inexcusable.

Many people would find Malini's book a source of hope and inspiration. But for me, the best thing about this book is what I learnt from it. For the majority of us who have little experience with disability – a situation resulting of course from that unfortunate “medical model” – Malini’s response to the different types of reactions she gets from the different types of people she meets shows us appropriate ways of behaving.

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