TULIKA DAS

India,

Tulika Das works to improve the lives of people with disabilities in rural India. Through a unique integrative approach, she works to include disabled people in mainstream Indian life and to integrate the needs and skills of the disabled into India’s development agenda.

This profile below was prepared when Tulika Das was elected to the Ashoka Fellowship in 2004.

INTRODUCTION

Tulika Das works to improve the lives of people with disabilities in rural India. Through a unique integrative approach, she works to include disabled people in mainstream Indian life and to integrate the needs and skills of the disabled into India’s development agenda.




THE NEW IDEA

Tulika pioneers a process to make people with disabilities an integral part of India’s plans for development and equal beneficiaries of poverty alleviation programs in rural India. She fights the marginalization of people with disabilities, believing strongly that education, employment, and health care plans must take their needs and skills into account. By integrating disability issues into India’s ongoing development work, Tulika challenges the mindset that people with disabilities should be segregated from those without.

Building on a successful community-based rehabilitation program for the disabled which she administered in rural West Bengal, Tulika’s model uses the Disability Act of 1995 as a springboard for introducing strategic interventions for the disabled at various levels of government. Her mission is not only to chart a new course for the sustainable inclusion of the disabled in rural society, but also to maximize India’s human resources. By neglecting the disabled, the country misses out on a major source of labor and innovation; she helps disabled people realize their great potential to contribute to Indian society.




THE PROBLEM

In India, people with disabilities are rarely given a chance to make the most of their talents. Because 60 to 70 percent of the disabled in India have only mild to moderate disabilities, few require highly specialized rehabilitation or integration but rehabilitation nonetheless remains institution-based and specialized, segregating patients and widening the gap between the disabled and society at large. While many organizations working with the disabled talk about inclusion, for all practical purposes it remains out of reach for most disabled people.

Few community organizations include the disabled in their list of beneficiaries, falsely assuming that disabilities are highly technical or medical matters requiring a specialized, segregated response. The same holds true at the government level; when it comes to implementing development programs of community-based organizations, the government and donors see disability as an unrelated issue. Furthermore, although 3 percent of government grants for the poor do go to the disabled, much of this money goes unused.

Even organizations working in the field of disability tend to concentrate solely on disabilities rather than on the full lives and tremendous potential of the people who have them. Too often, rehabilitation programs reinforce the notion that the disabled are nonproductive, noncontributing members of society. Meanwhile, powerful taboos against disability still exist in much of rural India, ostracizing many disabled people from birth. All of these problems fuel a cycle of poverty, illiteracy, ignorance and fear.




THE STRATEGY

Tulika is widely acknowledged across India as the architect of a successful community-based rehabilitation program for the disabled. Her program proves that it is possible for the disabled to participate equally in India’s economy and society. Realizing that it is impossible to focus on a single disability in poverty-stricken rural areas, she has adopted a single-item agenda: create social space for all people with disabilities. Her strategy is rooted in the belief that the basic needs of both disabled and non-disabled people are the same. Therefore, creating separate sets of policies for each group of people is a waste of resources, holding back productivity rather than enhancing it.

Her community-based rehabilitation program, started by her organization Sanchar, has a training program for community organizations, government agencies, and large institutions, which works in more than seven states in the Eastern and North Eastern region of India. The training program aims to help these organizations integrate people with disabilities fully into their workplaces. In particular, the program focuses on demystifying the fear that many people have of working with the disabled, showing them that accommodating people with disabilities is actually quite simple and rarely technical or complicated. Sanchar works with its client organizations for several years to ensure that the work is successfully implemented.

Tulika also works with state agencies to ensure holistic progress to her disability advocacy. She particularly focuses on overcoming a disturbing trend in Indian development programs: many of the programs that focus on women—for example, in the areas of reproductive health, income generation, microcredit or vocational training—exclude disabled women. As a result of Tulika’s advocacy, women with disabilities are now invited to the annual conference of the National Commission of Women’s Work in the State. The mainstream women’s organizations network has also started including disability as an issue

Tulika also works closely with the rural education system, providing information and tools to smoothly integrate disabled students into the schools. As a result, attendance rates have improved and dropout rates have decreased in many schools. Today, many village schools that once closed their doors to students with disabilities now welcome them, and a number of schools have undergone renovations to make their physical structures more accessible to students with disabilities. Tulika has also designed disabled-friendly textbooks, aimed at slow learners and students with hearing and visual difficulties. These books teach lessons in a picture-based format. For the visually impaired, Braille versions of the textbooks are available. The books have become a huge success in village primary schools.

Tulika engages with the government at both the grassroots and the national level. She uses her organization’s community-based rehabilitation experience to convince local councils to make disability inclusion a priority and motivate them to gain ownership of the issue. She also helps the councils access the 3 percent of government grants allocated for people with disability under poverty alleviation plans.

Currently, Tulika is planning to work with 36 community-based organizations across West Bengal for a study of the status of women with disabilities in the state. During the course of the study, two members from each group will be trained to include the disabled in their ongoing work. Tulika is also directly working in 75 villages in West Bengal and partnering with 35 organizations in other Indian states.

Tulika’s work is paying off. Today, organizations trained by Tulika have begun running their own training programs for other groups, spreading her methods in self-replicating waves. Also, in the last national census, after more than 30 years of lobbying by various groups, the government finally included disability in its tabulations of Indian life.




THE PERSON

Tulika Das honed her leadership skills in a family of progressive thinkers. Tulika’s mother, who died when Tulika was 9, instilled in her daughter a strong set of values, and her father nurtured in her a sense of independence.

In her early career as an actor, Tulika’s life changed when she took on the role of a wheelchair-using woman. Her preparation for the role took her to rehabilitation homes, which opened her eyes to the extreme marginalization of people with disabilities. She joined the fledgling organization Sanchar, working in rural West Bengal in late eighties. After some years Tulika took the reins and built what would become one of the most successful programs for the disabled in India.

She now lives in West Bengal with her husband and 12-year-old daughter.




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