By creating a scalable state-level federation of self-help groups, S. Sankara Raman is equipping India’s rural disabled, a large yet neglected segment of the population, with the rehabilitation, organizational, and legal resources to develop significant political capacity and to emerge as a powerful force leading a new phase of India’s disability movement.
The New Idea
Sankara is transforming the role of India’s disabled from being a fragmented and powerless segment of society to become a strong civic body of capable citizens interacting with the government, benefiting from their rights, and contributing to the Indian economy. By creating a scalable state-level federation of self-help groups that inform and support the disabled in their civic participation, Sankara is equipping India’s disabled with the wherewithal to not only monitor and manage their rehabilitation, but to also independently drive their own advocacy as a united front.
Until recently, India’s disability movement has been primarily an urban phenomenon, where government resources had not filtered down to affect the rural disabled. Despite a recent series of scattered grassroots efforts to reach the rural disabled, the movement’s expansion lacks the coherency and strength to reach most of the population. Sankara’s strategy takes advantage of the current rural activity, by developing a greater federation that encompasses grassroots efforts and works with the rural disabled to generate capability, confidence, and change from within.
At the core of Sankara’s approach, self-help groups at the micro level monitor rehabilitation and provide follow-up after institutional care to reinforce capacity and confidence among the disabled. In the next phase of strengthening and organizing self-help groups into a state-level federation, Sankara is creating a common platform for the disabled to confidently assert themselves as a capable and productive segment of society.
The federation creates linkages with local and state-level governance to strengthen their political power as a collective force. Sankara envisions disabled citizens becoming able to demand their rights in the public arena, equipped with the legal support entitled to them by The Persons with Disabilities Act (Equal Opportunities, Protection of Rights and Full Participation) of 1995. Collaboration with government bureaus, financial institutions, and various professionals will enable the federation to lead the disability movement to ensure a more accessible and productive life for the disabled in India. Through interaction with the local panchayat and state governments, Sankara envisions his grassroots movement will reach a national scope.
Despite the long history of India’s disability movement and the national scope of government schemes, only an estimated 5 to 10 percent of India’s disabled actually has access to services; due in part, because most rehabilitation facilities and institutions providing specialized services are located in large cities. However, 75 percent of India’s disabled reside in rural areas, and most are neglected, impoverished, and denied fundamental rights to education, employment, and as active citizens in society.
The notion that disability is a concern for charity rather than a human rights issue promotes dependency and limits the capacity of the disabled as productive individuals. Moreover, the lack of rehabilitation, vocational training, and income-generation opportunities, keeps most of India’s disabled unemployed and in poverty.
Despite recent grassroots efforts to extend the disability movement into rural India, the rural disabled still lack the community space necessary to meet and address their issue—keeping them disconnected and immobilized in society. Furthermore, societal discrimination is so entrenched that neither government campaigns to address disability issues nor existing rehabilitation efforts have succeeded in ensuring the rights or improving the situation for the majority of rural disabled.
Although government policy and legislation ensure equal rights and assistance for the disabled, the lack of fiscal support and implementation mechanisms limits the scope of governmental efforts. The Persons with Disabilities Act (Equal Opportunities, Protection of Rights and Full Participation) enacted in 1995 by the central government designates the rehabilitation of persons with disabilities as the responsibility of the state. However, unaware of state-level government officials and a lack of accountability undermines the implementation of the Act. As a citizen, the rights and resources provisioned by the Act are extremely difficult to access. To receive the benefits stipulated in the Act, an individual must present a certificate of disability issued by a designated medical board. However, lack of awareness and limited access to these medical boards limits the capacity for support from the outset.
The continual struggle for livelihood and the battle against social stigma is a harsh reality for most of India’s rural disabled. The result is a disabled population both unaware of their entitled rights and unable to interact with the government. With limited grassroots efforts and virtually no community forum to address their issues, the rural disabled ultimately lack the unified political voice necessary to demand their rights. The lack of access to information and rehabilitation services coupled with the disregard of the government leaves them neglected and powerless in their communities; unable to benefit from current legislation.
Sankara is organizing self-help groups into a state-level federation to build an informed rural disabled population to collaborate with the government, leverage the Persons with Disability Act, and demand disability rights in the public arena. His strategy involves four crucial elements—the demonstration, integration, empowerment, and representation of the rural disabled.
Sankara recognized the urban elitist history of the disability movement in India and has designed a model rooted in and fueled by the rural disabled population it works to empower. His strategy takes advantage of the current rural activity dealing with disability, as his federation will include existing grassroots efforts and grow from greater participation.
From his personal experience living with a disability to his work with the Amar Seva Sangam disability center, Sankara has gained invaluable insight into the process of rehabilitation. Having undergone and analyzed institutional rehabilitation through the lenses of both the facilitator and the recipient, Sankara understands that the mere delivery of rehabilitation services is not an end result but rather the initial phase of his work. His vision of a productive disabled population enables him to see beyond institutional rehabilitation and to work towards cultivating the capacity of a large untapped human resource—India’s rural disabled.
Sankara is demonstrating the benefits of participatory rehabilitation through launching a life-skills center in close collaboration with local self-help groups. At the core of Sankara’s rehabilitation model, a system of local self-help groups serves as a link between the individual and the life-skills center, monitoring individual rehabilitation and following up after the institutional care. Not only do the self-help groups reinforce capability and confidence among the disabled, they enable the members to take control of their rehabilitation. Groups identify gaps in the rehabilitation system, create local capacities to deal with their issues and support themselves through the process. Although Amar Seva Sangam currently provides training and financial support to local self-help groups, Sankara is advising groups to become financially independent and self-sustainable through income-generating techniques.
Sankara also uses the federation as an effective integration tactic and as a source of empowerment in the subsequent stages of his strategy. By organizing self-help groups into a federation, Sankara is not only giving India’s rural disabled visibility he is creating an environment in which they can emerge from local superstition and traditional neglect. Through interaction with the general community, self-help groups are raising awareness about the disabled, and their members are living as productive agents in society. As a source of self-reliance, the groups empower their members to confidently find their role in the community and to assert themselves collectively as a public entity to be acknowledged and respected.
Where integration at the community level yields individual empowerment, Sankara envisions that vigorous interaction with local governance will equip and empower the federation as a political voice to represent the disability movement. By providing experience in advocacy, democracy, and self-governance, Sankara is equipping India’s rural disabled with the means to manage their rehabilitation efforts and lead the disability movement as a unified political force. The self-help groups establish relationships with the local panchayat government and through dialogue sensitize the panchayat about disability issues; creating the understanding necessary to enable future collaboration.
At the state-level, Sankara recognizes the opportunity for collective action generated by The Persons with Disabilities Act of 1995. As the Act presents several common issues among the disabled, such as mobility, education, and employment policies, Sankara sees the need for India’s disabled movement to unite and collectively pressure the government to implement the legislation. Sankara is confident the federation will exercise its political power and ultimately represent the disabled by advocating for their entitled rights in the Act.
Sankara realizes that restricting participation in the federation to only persons with disabilities would inhibit the scope of the movement. So he is creating roles for businessmen, lawyers, architects, and anyone with an interest in the field of disability to maximize the federation’s impact by drawing on each member’s varied experience and expertise. The federation, diverse in profession yet uniform in motivation, will advocate for rights at the local arena, such as improving transportation, increasing accessibility of facilities, and ensuring the right to 3 percent reservations in public education and government jobs. Sankara has planned several initiatives to improve conditions for the disabled within the framework of his federation. One clever tactic is the creation of tax programs under corporate social responsibility, in which companies may donate to an endowment to cover the high premium of insurance costs for self-help group members.
Of the twenty-nine districts in Tamil Nadu, Sankara reports that sixteen have established self-help groups with over 1,000 members in their region. Although Amar Seva Sangam organizes seminars and workshops with citizen organizations, many districts lack such a network and activity. In an effort to promote and identify organizations to coordinate the federation in the districts, Sankara has developed a proposal detailing the objective to develop self-help groups in the thirteen remaining districts of the state at an annual expenditure of 20 Lakh Rupees. Sankara expected to have 10,000 members in their network in 2007 and an estimated 500 leaders with the capacity to address issues and challenges. The large number of participants will enable them to organize an annual gathering to advocate their cause to the government and private sectors. Sankara hopes that in five years, the federation of self-help groups will be a unified vibrant movement, in which India’s rural disabled will emerge paving a new course for progress.
Sankara was afflicted by muscular dystrophy at a young age and has had to depend on caregivers for all his needs. In spite of his severe physical condition and being confined to a wheelchair, he pursued his education and completed his Chartered Accountancy with distinction, winning a gold medal. As an accountant, Sankara believed he was the most severely disabled person who had to overcome numerous obstacles to perform his work, and he confronted discrimination and scrutiny by taking up work as a challenge and since then, has helped to start and partner several successful accounting firms.
When young Sankara realized the need for organization of the disabled to achieve success, he joined five other disabled persons to found the Tamil Nadu Handicapped Welfare Association in 1981. The objectives were to generate awareness among the community and to influence policy changes regarding the disabled at the macro level. With the creation of additional branches, the Association extended to cover most of the state of Tamil Nadu.
However, it wasn’t until he met Mr. S. Ramakrishnan, his future partner at Amar Seva Sangam, that Sankara fully grasped the potential of the severely disabled to overcome extremely strenuous challenges and succeed in spite of their limitations. Inspired by Mr. Ramakrishnan’s commitment to serve the disabled despite his condition as a quadriplegic, Sankara felt compelled to devote his energy and professional expertise to improving the disability movement in rural India.
Since he joined Amar Seva Sangam in 1992, Sankara has provided the strategic organizational planning, income generation activities, and general management as the chief functionary of the Sangam. Stemming from his work with the Sangam to create a model township for the disabled, Sankara explored the process of rehabilitation and recognized the lack of follow-up support to ensure integration into society. Sankara’s experience organizing and training self-help groups has led his work to progress to another level, in which he envisions a state-level federation of self-help groups empowering members from the grassroots to unite and become the political voice of the rural disabled. Sankara is devoted to making the immense potential of the neglected rural disabled a worthwhile and beneficial reality for the disability movement and for India as a nation.