Purobie Bose is providing care to disabled children in India through a new, inter-disciplinary training program that enables special educators and parents to integrate support for a wide range of disabilities.
The New Idea
Many of the disabled children in India, as elsewhere in the world, cope not only with their major diagnosis but also with other related impairments and psychological and social pressures. If they are to be integrated into any society beyond the family or receive any support beyond its resources, their parents must seek out and coordinate impersonal and fragmented rehabilitation services: a task few have the resources to do. This insight caused Purobie Bose to develop and institutionalize an alternative system of integrated services and the management training to deliver them in big cities, villages and homes. She has described her work as steering kids, parents and services on a journey through a maze. Purobie's model helps disabled children to enter society and strengthens their parents. Her work reflects her respect for the indigenous ethos as she searches for solutions to the intertwined problems of disability, poverty and low state budgets for assistance. In particular Purobie leverages the spirit of volunteerism that is part of Indian society generally and found perhaps most profoundly within the family. Purobie discovered very early on that she could help children most by working with their parents: "Parents and the family seemed to be the most important logical point of strengthening; after all, social collaborations were the mainstays of all our lives here in India. During the course of my work, I had wonderful experiences with parents and was motivated by the things that they did for their children, including them naturally into their lives, trying to remember all those details that we had advised them to take care of. Kids with disabilities just blossomed where parents, family, householders took the leading teacher role."
Statistics from India's National Sample Survey in 1981 categorized about two percent of India's population as physically disabled: although the number sounds low, it represents more than sixteen million Indians with visual, hearing and locomotor handicaps; and some sources report total numbers as high as 90 million disabled persons. At least two million of these people have multiple handicaps. No studies have conclusively been able to count the number of Indians with mental handicaps, but rough estimates put the number at twenty million. As the general population in India continues to grow, so do the numbers of its disabled, and Purobie describes the gap between needs and the number of services available as growing by the hour. As in many cultures, disability is considered a taboo or the result of bad karma; the causes are often poorly understood by the public, leading to victimization of the parents, especially the mother. People often consider the disabled to be responsible for their conditions and thus avoid them. Care institutions are based in cities, although the greatest need for them lies in villages, and services that are accessible are specialized and lack versatility. Within the school systems, for example, there are a few special education centers: they are organized around specific disabilities, and they combine admissions of a range of disabilities, so that classes for hearing impaired, learning disabled, cerebral palsied and retarded students typically take place in one room. Many disabled children are unable to find suitable services and in Purobie's words, "have no opportunities to develop abilities or enter the mainstream as independent citizens of the country." Since 1981, which was specified as the year of the disabled, the Indian government, industry and individuals as well as international organizations such as the UN and UNICEF have taken a variety of steps to place disabilities on the nation's agenda. Parliament passed a law in 1992, called the Rehabilitation Council of India (RCI) Act, which aims to "regulate training, create a register of professionals, and weed out quacks and charlatans," and requires all people who work with the disabled to register and get a license. General education teachers, who receive much higher salaries and more benefits than special education teachers, are exempted, but any unlicensed person working with disabled children may receive large fines or even imprisonment. While well-intentioned, the RCI Act actually has had disastrous consequences, in the opinion of Purobie and many citizens' organizations who unsuccessfully lobbied against it. In villages, where the majority of disabled children live and licensed professionals are scarce, the RCI Act seems out of context and impractical. Further, it undermines the spirit of volunteerism, which Purobie says "came quite naturally to many. Volunteers are always unprepared people, but they rise to the situation and for many programs are the backbone and mainstay, as there is often little funding for paid workers."
Purobie has integrated a broad scope of educational, therapeutic and rehabilitation services for disabled children, which can all be accessed through the Society for Remedial Education Assessment and Counseling for the Handicapped (REACH), which she founded in 1980. The Society trains parents and teachers and provides a road map of services for diasabled children. Purobie's work has been further extended by a massive public awareness media campaign conducted, with her leadership, by a team of people who work in the field. Either on site, by referral or by training teachers, the Society provides educational services that range from, for example, a standard school curriculum for a child of normal intelligence but who has an orthopedic disability to a daycare facility for severely handicapped children. Many of the staff are volunteers. The continued lobbying of Purobie and others against the RCI Act has resulted in the government turning a blind eye to that practice, though it has refused to amend the relevant clauses. Purobie and volunteer professional colleagues continue to work without a license.
A variety of the society's programs pave the way for disabled young people to enter society. Pre-vocational training focuses on mobility, hygiene, social skills and creative arts for students who are then referred to other organizations for job training and placements. Purobie has started leisure clubs for disabled youth between the ages of 18 and 24, an awkward time for some who are eager for social contact, particularly if their vocational training has not yet resulted in a job placement. She solves the potential staff shortage in many activities by engaging parents.
Since 1996 Purobie has offered a series of month-long training courses for parents, into which she incorporates methods that have proven successful in other countries. For example, the Marte Meo ("On One's Own Strength") program, devised by Maria Aarts, a Dutch communication therapist, is a video-based intervention that helps parents recognize interactions that encourage dependency in their disabled children. It has been adopted in numerous other countries and is being introduced in India at the Society, where Indian special educators are receive training under the guidance of Ms. Aarts. For parents who cannot travel to the Society's headquarters, support is available through a Home Management program. Purobie finds that parents benefit from their involvement as much as their children do, and in fact, the parents who administer the leisure clubs have developed a self-help group among themselves. Her goal is to train 10,000 parents in five years.
Purobie has begun an Institute of Special Education at the Society, which offers a training course for college graduates. A vernacular certificate course, where instructions and exams are given in Hindi or Bengali, is available for undergraduates. Trainees are paid a stipend to cover their costs, so money is not an obstacle to any student who wants to enter the field. The teachers, none of whom charge fees for their lectures, are psychologists, therapists and doctors, as well as educators. The Institute also runs correspondence courses for members of Indian organizations who have no access to teacher training. The Institute of Special Education is not yet a part of the public education system but is recognized by the state government, which means that once trained, the teachers are eligible to receive government salaries.
From her base in Calcutta, Purobie has constructed a model that can be broadly reproduced under local leadership. By mid-1997 the Society had established satellite projects in villages and towns of Purobie's native West Benegal and others in the states of Gujarat, Bihar, Kerala and soon Tamil Nadu. Purobie finds the village work particularly rewarding, as her comments reflect: "Each area is a challenge to our team, as we set up the services on a shoestring budget whilst taking into consideration several prejudices and eccentricities. There is much enthusiasm and many eager folks willing to participate and facilitate these classes for the disabled. Their eagerness is contagious. For us city folks there's so much to learn and absorb of new situations and environments, very poor but positive and sincere. There is a feeling in REACH, that we must carry the local milieu along with us, to learn from them and empower communities to take over from our teams."
Purobie believes that persuading average Indians that their disabled neighbors are like them in every other way will do more to open doors than any other intervention. Her society publishes a quarterly newsletter about disability issues and in 1988 launched India's most visible disability public awareness campaign. A Swedish aid agency guaranteed ten years of funding for this campaign, which employs television spots and advertisements in the press and posters, all of which convey the message, "Opportunities will prove their abilities," in various regional languages. As part of the campaign, Purobie has designed workshops, talks and audio visual displays for teachers, students, service organizations, youth clubs, employees and community workers. There have also been a variety of direct integrated activities with local schoolchildren. Purobie relates the story of "a group of deaf mime theatre kids, who won a huge event which included participation from the top schools in the city. A large photograph on the front page of the most important daily in Calcutta attracted the attention of large numbers of people from all walks of life." REACH is growing "by leaps and bounds" (in Purobie's words), because it is willing to network at no charge and because so many places remain in India where there are still no services for the disabled. Various organizations are constantly inviting members of REACH to help them with disability-related issues.
Purobie's parents came from an affluent leading family in Calcutta, where she received a degree in education in 1969. Her dedication to the issues of the disabled stems from her experience at age 24 in a local school for the deaf, where she volunteered. Later she returned to her studies: in Manchester, U.K., she became certified as a teacher of the deaf; and she earned a graduate special education degree at the University of Oslo, specializing in mental retardation and visual impairment. She remembers: "From meeting with a variety of people-children with deafness and other disabilities, both here and abroad, my vision widened. There were so many possibilities available...the challenge was to translate these into reality here in Calcutta with its vast problems." When she returned to the school for the deaf in 1971, Purobie spent extra time working with parents at their homes, perceiving that this was the recipe to effecting change in India.
Subsequent work at the Spastics Society of Eastern India in Calcutta convinced her of the need to form an organization that could educate parents to provide care for many kinds of disabilities. Thus she founded REACH. From a few committed educators and parents, the society has now grown into an institution that commands respect as a pioneer in the field of services to the disabled. Purobie now acts its project coordinator and receives a government salary to do so. Simultaneously she is pursuing a Ph.D. Her thesis is on Hindu Deaf Children and Their Families in Calcutta. Aside from time spent writing the thesis in Norway, Purobie and her husband, an economist, live in Calcutta and are parents of a college-age daughter. She explains, "I do what I do because I enjoy meeting challenges, new people, and really solving human problems. I get immense pleasure from the friendships that have come my way from people in government, in funding agencies, in business, in universities, in nongovernmental organizations, in villages, parents, family members, and above all from all my pupils, disabled but from whom I learned so much, and through this learned to understand myself."