Abstract
One Little Finger is the inspiring story of Malini Chib, a cerebral-affected Indian woman in her forties. Her autobiography captures the period from the moment when oxygen to her brain was momentarily stopped due to the umbilical cord getting entangled around her neck to her present position as an Events Manager at the Oxford Store and the founder of ADAPT (Able Disabled All People Together) Rights Groups in Mumbai. With her lucid style, sharp and humorous wit she talks about growing up as a disabled person in India and England during the time when the disability movement gained momentum. As the daughter of Mithu Alur, a pioneering disability rights activist who established the Spastic Society of India, Malini’s story is not just the story of one person’s battle against adversity and prejudice but also the story of an institution and a movement.
Cerebral palsy is a neurological condition that affects motor skills and makes walking, talking and eating difficult activities. It does not necessarily affect intelligence. Although there is no cure for it, rehabilitation through early medical intervention, physiotherapy and special education can considerably help the affected person manage her/his activities of daily living with varying levels of efficiency. Unfortunately, an understanding of the condition was almost non-existent during the 1960s in India, and the doctors who examined Malini declared that she would not survive for long, and even if she did, she would remain a vegetable throughout her life. Malini not only survived, but also thrived. With access to the best special schooling facilities in England, a never-say-die spirit and the benefits of information and adaptive technologies, Malini has brought alive her life in this book which she typed with one finger.
What did it mean to be born disabled in a wealthy, highly educated, cultured Indian family? What did it feel like to be disabled in urban India and London? Malini’s family was an oasis in an otherwise hostile world, not only because it was materially very well-off but also in terms of high levels of social cohesion and emotional bonding. In addition to the unstinting care of her mother who made disability rights her life’s mission after her daughter’s birth, she was nurtured by a loving, caring and supportive extended family. The family was so well integrated that the divorce of her biological parents and her mother’s subsequent remarriage during her childhood did not disrupt the fundamental stability of Malini’s life. The role of a well functioning family that could manage long term disability and divorce in a healthy way is noteworthy. Summing up the situation on several occasions she appreciates her ‘democratic and understanding parents’ (p. 122) who constantly encouraged her to scale new heights.
Malini’s time was divided between Mumbai and London; and the book is replete with comparisons between East and West in terms of the facilities for and attitudes towards disability. Talking about the stimulating environment in the special schools she attended in England, Malini says: ‘At Cheyne (a special school in London) I received the best education and management’ (p. 9). ‘With the nurturing, caring and support I got at Cheyne, I grew from strength to strength’ (p. 11). Talking about her life in London as a toddler, she declares: ‘I enjoyed my home, school, my birthdays and holidays. I bloomed and laughed’ (p. 11). On the other hand, she found the special school environment in India stifling because of the isolation, inaccessibility and negative attitudes.
Describing her undergraduate life at St. Xavier’s College, Mumbai, Malini recounts how she had to be physically helped or carried up the stairs to attend classes. Furthermore, she could not participate in normal activities with her peers because her speech was slow and laboured, and it took people time to understand her. She found these experiences very frustrating and felt lonely and rejected. Perhaps the most poignant account in the book is her deep sense of sadness at not being able to have a sexual life. Talking about life at college in Mumbai, she says (p. 64):
However, like most women my age, I loved the company of men. I would try and seek them out and initiate a conversation, but unfortunately, the ‘poor little bastards’ had never been taught to reach beyond their own needs and so, they did not know what to do with me. Only a handful of men would make that extra bit of an effort to understand my atypical speech. But they never really went beyond superficial chatting.
Not being able to speak comprehensibly to others, not being able to move around freely and being the cynosure of all eyes made her very self-conscious, prompting her to ask (p. 54):
I knew that I was different and trapped in a dysfunctional body, but did others realise that I had a mind, a spirit separate from this body? …. Did they realize that my mind was normal? Did they consider thinking that my desires were just the same as theirs?
And ‘I would show them that, except for my body, I was just like them’ (p. 105).
The contrast between India and London in terms of accessibility issues and people’s attitude is repeatedly underscored. Ironically, two master’s degrees in women’s studies and library science respectively and a fantastic circle of understanding friends and caring professionals did not guarantee her a suitable job in London. Ultimately, she found a career and professional success in India, in her native Mumbai.
Notwithstanding class, cultural and even gender differences, any disabled person in any part of the world can identify with Malini’s experiences and observations. For instance, infantilisation, over-protectiveness of the family, paternalism of society and sexual exclusion are the common lot of disabled persons all over the world. Speaking in her honest, straightforward fashion with no pretence at political correctness, Malini’s book is full of the most personal accounts tinged with a healthy realism and an endearing gentleness that leaves the reader equally touched and introspective.