Finding the right words

FINDING NEEMA
Author: Juliet Reynolds
Publisher: Hachette
Pages: 340
Price: Rs 339

There are few works of fiction or non-fiction by Indians dealing with autism that capture the nature of the condition and its effect on children, adults and the families who have to deal with it. We've yet to have our The Curious Incident of the Dog in the Night-Time, The Language of Others or the Manga comic book series With the Light: Raising an Autistic Child.

It's a world of broken words and dreams, of silent languages and strange cries. Juliet Reynolds' Finding Neema certainly finds the right words to express the efforts of children and adults to cope with autism.

Reynolds' book is located in the lives of a Delhi-based couple, hers, to be precise. The setting and lives of the couple is important because it shows that autism can affect anyone, anytime, anywhere. Reynolds arrived in India as a journalist and writer on art and teacher of English from Britain. Her husband was the late Bengali painter, the radical and gifted Anil Karanjai. She, thus, had a close view of the evolving Indian art scene of the times, the struggling lives of painters and their ideologies and the growing commercialisation of the art world.

Reynolds must have been a symbol of an emancipated woman for many Indian women at the time. She was free of the validation of motherhood to qualify her life as meaningful and yet enjoyed the company that marriage and domesticity brought with it. She lived with her husband with confessedly no plans to be a mother. But life in India is crowded with people and the crowd that invades her home included a long retinue of domestic helps. An invisible minority for most middle and upper class Indians, Reynolds' books begins by narrating their stories - of survival, despair, aspiration and low cunning. And unlike Reynolds who has the education and ability to lead an independent life, the lives of the housekeeping women expose the glaring social inequities and their vulnerabilities. Marriages break, siblings sponge off them, children are bred with no care for rearing or nurturing. Food and money remain a struggle.

Into this poor, invisible, embarrassing but necessary community for India's upward class comes Neema. A son of Poonam, one of the Karanjais' domestic helps, he is born with deficiencies and a club foot. The couple watch this little child and mother cope with medical intervention to heal his legs even as his mother abandons her job and child to seek lovers and jobs abroad. Neema's entry into the Karanjai household seems a given, as they find themselves anxious about his future and well-being. It seems almost natural that they apply for the child's guardianship even as the mother leaves India.

That this couple, with no plans for starting a family, embraced a disabled child who is not their own is extraordinary, but Reynolds makes no claims to a higher cause. And that makes the story of Neema much more special.

Then begins the saga of Neema's struggle with autism - details every parent of a child with special needs knows only too well: the initial confusion about what ails the child, the trouble with elementary tasks of bathing, feeding and using the toilet, schooling issues, behavioural and cognitive deficiencies.

Most importantly, the book articulates the parents' frustration and anger while the child can never find the right words to express his condition.

Reynolds is unsparing of herself as a guardian and parental figure. She admits to losing control, mood swings and raising her hand at times. Her painter husband has more patience and tolerance with the boy. And yet again, in her retelling of Neema's story from childhood to an adult Reynolds brings in the social circle around her who rally to help her across classes. If her domestic helps treat Neema with care and patience, the friends, from writers, painters and noted personalities of art, seem to welcome Neema (Satish Gujral takes a knock on his back at a party as Neema lays on one of his impromptu thumpings) as do the villagers when the family moves from Delhi to Dehradun.

The book also details the many struggles and brave attempts of parents who set up autism foundations to help children cope since the nascent days of diagnosis in India. Reynolds and the trust in her husband's name are doing their bit for the welfare of autistic people.

Reynolds writes without sentimentality, which brings adds to the poignancy of Neema's story. Her message highlights how a child with special needs is a child of the community and that society needs to pool their resources to help them cope. Reynolds' book certainly speaks volumes on behalf of those who cannot find the right words to express themselves.