A touch of the special

"From three to a million lives,” is how Mithu Alur describes the long journey of the NGO ADAPT, formerly called the Spastic Society of India (SSI), on Friday evening. Sitting a few feet away from her in the drawing room of their Colaba home is daughter Malini Chib, an employee with Tata Consultancy Services. Malini, who suffers from cerebral palsy (CP), has come down from London to attend the launch of Alur’s book A Birth That Changed a Nation: A New Model of Care and Inclusion, which was released on Saturday, the International Day of Persons with Disabilities. SSI owes its birth to Malini. She is one of the many success stories of the 44-year-old organisation that was set up in 1972 in Colaba, Mumbai, at a time when in India the word spastic was often confused with plastic, and ignorance and discrimination went hand-in-hand.

A Birth... of sensibility

“The main purpose of the book was to alleviate the sufferings of millions of children tucked away in the remote corners of the country who do not have access to quality health-care services. At the core of this book is a new scientific method of rehabilitation and care developed by SSI in the early 1970s for children with multiple disabilities like CP as well as other physical disabilities, says Alur. After reading this book, Alur feels, parents, especially the mother, should be able to understand what to do with the child — how to carry the child, how to feed him/her and how to teach a kid suffering from a chronic neurological disorder the 3 R’s (reading, writing and numbers). At the same time she emphasises that to reach out to a wider audience, A Birth That Changed a Nation: A New Model of Care and Inclusion needs to be translated in regional languages.

One of the key points in the book is the human aspect of being disabled in India, about those who have suffered years of neglect in this country. It narrates stories of how children with a slight modification in curriculum and examination systems, with a little help from skilled teachers and therapists and a close partnership with parents, passed examinations effortlessly. A shining example in this regard is Alur’s daughter Malini, who is an academician with a Master’s degree in Gender Studies from the Institute of Education, University of London.

Government policies

It is important to view SSI’s work against the backdrop of government policies for the country’s disabled population. Curiously, in India, no proper statistics regarding the prevalence and incidence of disability are available.

The National Sample Survey Organisation survey in 2002 put the figure of the population suffering from disabilities at 1.85 crore, which was then considered a gross underestimation by experts. The 2011 Census puts the figure at 2.68 crore, a marginal increase from the 2.19 crore estimated after the 2001 head-count exercise. United Nations’ specialists believe that disabled people comprise 10-15 per cent of the current population. Even by conservative estimates, there are 10 lakh spastics in India. Activists have long railed against the raft of legislations such as National Trust Act (1999), Persons With Disability Act (1995), Rehabilitation Council of India Act (1992) and Mental Health Act (1987), as they are essentially discriminatory in nature. The Disabilities Bill, supposed to replace the PDA, is still languishing in cold storage. It has been reported that although the Integrated Child Development Scheme, under the Women and Child Development department, targets disadvantaged population, it has conveniently left out children with disabilities. This has resulted in the exclusion of nearly five million children in the age group of 0-5. This winter session, the Lok Sabha is also scheduled to  vote on the Mental Health Care Bill (2013), which is slated to replace its 1987 predecessor. The new Act protects the rights of persons with mental illness and pushes for their access to mental healthcare. 

Even today in India, a majority of services for the disabled child is delivered through the voluntary sector. Where there are state-supported schools for the specially-abled, it defeats the government’s policy of integration of these children into the educational system. In the absence of institutional support, it is NGOs like SSI that have become crucial to cater to kids with special needs. From the bungalow in Colaba, SSI has spread to 21 centres across India, including the four metros and smaller cities like Pune, Baroda, Tepur, Guwahati, Allahabad and Cochin.

SSI and their aim

“SSI was built from scratch and it brought about a sea change in an environment where apathy, indifference, hostility and ignorance reigned supreme,” says Dr Samiran Nundy, a renowned surgeon. He is the chairman of the Institutional Review Board set up by Alur to critique the performance of the organisation under 10 domains such as education, treatment and rehabilitation unit, child and parents’ partnership, training of teachers or therapists, and capacity building in the community. Nundy’s wife started SSI in northern India and his mother was instrumental for setting up a centre in Kolkata. 

“SSI focuses on a multi-disciplinary approach involving a team of doctors, psychologists, special educators, physiotherapists, job counsellors for the overall well being of the child,” says Dr Nundy, who is also Alur’s brother-in-law.

SSI is considered a trailblazer for the unique model it developed over the years. It draws inspiration from what Alur witnessed in England when she took Malini for treatment in 1968 since there was no proper facility in India.

“The doctors there treated my daughter with love and affection. Their whole approach to us changed our lives. They said Malini has a 150 IQ. Gradually she began walking with a walker, rode a tricycle, swam with a tyre, and began to read and write,” recounts Alur. “In the six years I was in England, I worked hard to get a diploma as a special educator so that I could take proper care of Malini,” she said. Inspired by the principles of nation-building, her relatives closed ranks with her and with the help of the then Prime Minister of India Indira Gandhi, she got the premises in Colaba to set up SSI. Nargis and Sunil Dutt became ardent champions of the cause.

Right from the birth of SSI, the focus was to train and educate the parents and counsel them for which we introduced a course called home management, she says. “Our approach also emphasises on love and compassion, without which no amount of expertise will work. When the parents became experts, they became equal partners in the initiative. With our input and their input, the kid started registering improvement. Gradually, a whole cadre of people came together only because they wanted to do the right thing for their child.”

From Colaba, SSI branched out to Kolkata and then to Delhi. It subsequently spread to different parts of India after people who took the teacher training programme from the NGO-opened centres in their respective towns and cities. “That’s how SSI reached Chennai through my first student Poonam Natrajan whose son Ishwar suffers from CP,” recalls Alur.

Coming together

To fill the shortage of trained manpower, SSI began training teachers, therapists, social workers and psychologists in 1977. The first postgraduate diploma course in the education of the physically handicapped was set up in the country in 1978. It was renamed to Postgraduate Diploma in Special Education [Multiple Disabilities: Physical and Neurological] in 2003. The curriculum was developed in collaboration with specialists from the British Council, Spastics Society of UK and the Institute of Education, University of London. Its aim was to develop the skills, abilities and knowledge of teacher trainees to meet the physical, educational, social and emotional needs of persons with physical and neurological disability. Over 400 teachers across the country have received training.

While looking back at her life and work and the unstinted support she has received from various quarters — from celebrities to commoners — Alur quotes lines from Rabindranath Tagore’s poem ‘The Little Lamp’. 

“Who will do my duties?” asked the Setting Sun... 
“I shall do what I can, my Master,” said the Little Lamp.
“I have tried to light as many lamps as possible so that special children can be part of the society and not be treated as outsiders. Though there has been marked improvement in the attitude of the people, India still practices discrimination at both crude and subtle levels,” she says. 
Alur’s book, replete with photographs, shows what her untiring efforts have yielded — the many happy faces of children and their mothers who fought to overcome their limitations.