Susanne Pohl-Zucker (Germany) and Jagdish (Jags) Chander (India) offer reflections on their work from their respective countries. What makes someone take up research on a subject that constantly needs to be justified and explained? How do they use and stretch existing institutional frameworks to accept not just scholarship but a paradigm that is new and sometimes threatening? And how do they blend scholarship and activism? Together they suggest our international scope and the vastly divergent roads that lead to doing this work.
History and Disability in India
Jagdish (“Jags”) Chander is a Senior Lecturer (Associate Professor) in the Department of Political Science, Hindu College, University of Delhi, India and doctoral candidate in the Disability Studies program at Syracuse University, USA. He is currently completing his dissertation on the self-advocacy movement of the blind in India and a biography of Lal Advani, a leading disability rights advocate and father of rehabilitation services in the 20th century. His recent publications include “The Role of Residential Schools in Shaping the Nature of The Advocacy Movement of The Blind In India” and a chapter co-authored with Susan L. Gabel, “Inclusion in Indian Education,” both in Susan L. Gabel and Scott Danforth, Disability Studies and Education (Peter Lang Publishing, 2008). His presentations at various international conferences, academic interest in disability rights issues, and passion for being an activist in the disability rights movement, make him one of the most distinguished people working in the field of history of disability in India from a Disability Studies perspective. Below he describes how he came to do this work and provides an overview of recent scholarship. He can be reached by email at: firstname.lastname@example.org
The publication of noted American journalist Joseph P. Shapiro’s, 1993 book No Pity: People with Disabilities Forging a New Civil Rights Movement aroused great interest from disability rights activists and scholars of Disability Studies in the United States and India. Shortly after its publication, I participated in a discussion held through video conferencing between some scholars and activists from both countries. In addition to Shapiro, they included Judy Heumman and Justin Dart, both prominent disability rights activists from the United States, and some leading people involved in disability issues in Delhi in March of 1994.
Soon after that discussion, the Dehli-based group followed up by forming a cross-disability coalition to advocate for the passage of comprehensive legislation ensuring the rights of disabled people in India. The organization was named Disability Rights Group (DRG). A core committee was formed that consisted of people with different categories of disabilities: three blind people, four physically-impaired people, and one person who was a scholar interested in people with cognitive disabilities. It was not a highly comprehensive group, but it was a start. Prior to the formation of the DRG, the only organized self-advocacy movement was that of the blind. Being blind since the age of six, I was educated in the two residential schools in Delhi which were the hub of this movement when I was a student there during the 1980s.
My involvement in the DRG gave me an opportunity to become part of the struggle for the enactment of the first comprehensive disability law in India and kindled my interest in disability history. Having completed my B.A. and Master’s along with an M.Phil. in Political Science from the University of Delhi, I was heavily inclined toward conducting research on rights issues. My background enabled me to remain in touch with the literature on various kinds of social movements in India, like the dalit movement (movement of the oppressed classes/castes), the communist movement led by the Marxist groups, the socialist movement led by followers of Gandhian ideology such as Jay Prakash Narayan and Ram Manohar Lohia, and also to some extent the emerging feminist movement. However, there was hardly any documentation of the disability rights movement available in the 1990s in India.
While struggling with the dilemma of pursuing doctoral study in this area, I participated in an International Congress of Asian and North African Studies held in the fall of 2000 in Montreal, Canada. Although I did not meet anyone engaged in academic discourse on disability issues from a non-medical model approach at that Congress, during my stay I had an opportunity to interact with some Canadian scholars of Disability Studies from York and Ryerson Universities. Through them, I learned about a Disability Studies conference to be held in Washington D.C. in the third week of October sponsored by the National Institute on Disability, Rehabilitation and Research (NIDRR). It was at this conference that I learned about the Disability Studies program at Syracuse University. Greatly excited, I visited Syracuse in the last week of October. During interactions with the students and faculty at SU, I realized that I found what I was looking for: a program which would enable me to conduct research on disability with a disability rights perspective. I began in the fall semester of 2001.
During my coursework at Syracuse, I conducted six interviews with activists of the National Federation of the Blind (NFB) and the American Council of the Blind (ACB), the two leading advocacy organizations in the United States. I also spent about a month collecting data at the Professional Development and Research Institute on Blindness (PDRIB), a partnership between NFB and Louisiana Tech University located in Ruston, Louisiana. I was fascinated by the intellectual and political movement of the NFB, which challenged the construction of blindness by vehemently championing blind people to become self-advocates, rather than being on the receiving end to get whatever was offered by the mostly sighted professionals heading various service agencies for the blind.
My three years of coursework at Syracuse University, enriched me with a theoretical understanding of a Disability Studies perspective. Having acquired a reasonable knowledge about the philosophy and accomplishments of the advocacy movement of the blind in the U.S. and India, as well as having been part of the broader disability rights movement through my involvement in DRG during my early adulthood, I was now ready to venture on to pursue my old goal of documenting the disability rights movement in my country.
Initially I wanted to pursue a project that would bring together information from the advocacy movements of the blind in the U.S and India, with that for the broader disability rights movement in India in the 1990s. Considering the fact that the disability rights movement is more recent in my country, it would have been easier to document because it was well-covered by the print and electronic media. However, the advocacy movement of the blind that originated in the 1970s required serious scholarly attention. To be sure, there had been some media coverage of incidents like the lathi charge upon blind protesters in March 1980. This standard practice of police quelling rioters with sticks scandalized the public that viewed disabled people only as those to be pitied. It became clear to me that there was an important story to be told, one that I could and should document through oral histories. It is likely that research will be undertaken in India on the broader disability rights movement as disability becomes a social and political issue at the national level and a subject of academic interest in the decades to come. But this can not be understood without documenting the history of the blind self-advocacy movement.
Prior to the formation of the DRG in March 1994, the advocacy organization which made its presence felt at the national level was the NFB of India, founded in 1970, an organization inspired by but not directly related to the organization of the same name in the United States. In the 1980s NFB spearheaded a radical blindness movement by resorting to methods such as picketing, rallies, hunger strikes, demonstrations, and the like. Therefore, when it came to advocacy for rights of the disabled, it was basically the advocacy movement of the blind led by the NFB for over two decades. In demanding their own rights, the blind often spoke for those of other disabled people as well. These efforts culminated in India’s Persons with Disabilities Act (equal opportunities, protection of rights and full participation), known as the PWD Act of 1995. This initiated a new phase in the history of disability in India, something that needs to be explored and carefully documented, as the following overview of the existing literature in the field of disability should make clear.
Apart from a few exceptional books written from a Disability Studies perspective, most of the Indian literature falls in the category of the medical model. There has been no identifiable work mentioning the advocacy movement of the blind in India. For that matter, little work exists on our disability rights movement apart from Meenu Bhambhani’s 2004 unpublished master’s thesis at the University of Illinois at Chicago. And she doesn’t discuss the role of the blind.
The only publication by an American scholar that I could identify which touches upon the issue of the disability rights movement in India is part of a chapter in James Charlton’s, Nothing about Us without Us published a decade ago. By focusing exclusively on the National Association for the Blind (NAB) which he incorrectly portrayed as the largest and most powerful disability rights group, he failed to mention the country’s true advocacy organization, the NFB. The fact is, for most of its existence, NAB has been a service agency in the area of blindness, and until very recently it vehemently opposed the disability rights approach adopted by organizations like the NFB.
One of the most important earlier publications in the area of disability which ventures beyond the medical model is Usha Bhatt’s, The Physically Handicapped in India published in 1963 which remains a highly cited reference on disability in India even now. However, Bhatt’s approach was more sociological and based on moral considerations rather than a disability rights perspective. She explores the changing attitudes of society toward disability by tracing them to the scriptures in India and to western philosophy starting from Aristotle’s views on disability. Bhatt elaborates the karma model (actions of past lives making an influence on the present life) in the context of disability and explains the reasons for the lack of development of a medical model of disability in India. She argues that while the break-up of the extended family and two world wars had a tremendous impact on social attitudes toward disability in the west, the same wasn’t true for India. Because it remained relatively unaffected by the world wars in the last century, the disabled segment of the society did not receive attention from policy makers and planners. As a result, social attitudes toward disability continued to be highly influenced by the moral or charitable approach arising out of the traditional Hindu notions of karma and dharma (religious duty).
Neither of the two important publications of the 1980s, Chaturvedi (1981) and Mani (1988), mention the advocacy movement of the blind, its accomplishments, and its approach. A similar line approach was adopted by T.N. Kitchlu (Kitchlu, 1991) in relation to welfare services for the blind in India in the second half of the 20th century. While Mani and Chaturvedi dealt with disability issues from a policy angle in a broad way, Kitchlu claimed to analyze the educational and employment measures adopted for the blind by the welfare State of India. In these three books, the clear message sent to readers was that disabled people had received all the benefits accorded to them as a part of the welfare philosophy of the Indian State, not as a result of the struggle carried out by them for their rights.
The decade of the 1990s witnessed progress in recognition of the importance of the advocacy approach. The passage of the ADA and the movement preceding it in the United States, the origin of a broader disability rights movement in India in the first half of the 1990s, the passage of the PWD Act of 1995, and the growing disability studies literature in the West gradually started to influence writing about disability in India. As a result, scholars such as Asha Hans and Annie Patri (2003) and Anita Ghai (2003) have started to adopt a disability studies approach. However, these are the only two identifiable publications in India that can be put in the category of disability studies so far. Much work remains to be done!
- Bhambhani, M. (2004). “From Charity to Self-advocacy: the Emergence of Disability Rights Movement in India. Unpublished M.A. Thesis, University of Illinois at Chicago.
- Baquer, A. (1994). Disabled, disability, and disabilism. New Delhi: Voluntary Health Association of India.
- Baquer, A., and Sharma, A. (1997). Disability: Challenges vs. responses. New Delhi, India: Concerned Action Now.
- Bhatt, Usha. 1963. The physically handicapped in India. Bombay: Popular Book Depot.
- Charlton, J. I. (1998). Nothing about us without us: Disability, oppression and empowerment. Berkley: University of California Press.
- Chander, J., and Baquer, A. (2005) Lal Advani: The torch bearer. Delhi: Indian Association for Special Education and Rehabilitation.
- Chaturvedi, T. N. (Ed.). Administration for the disabled: Policy and organizational issues. New Delhi: Indian Institute of Public Administration.
- Gabel, S. L., & Danforth, S. (2008). Disability and the politics of education: An international reader. New York: Peter Lang.
- Ghai, A. (2003). Embodied form: Issues of disabled women. New Delhi, India: Shakti Publications.
- Hans, A., and Patri, A. (Eds.). (2003). Women, disability, and identity. New Delhi, India: Sage Publications.
- Kitchlu, T. N. (Ed.). (1991). A century of blind welfare in India. Delhi, India: Penman Publishers.
- Mani, D. R. (1988). The physically handicapped in India: Policy and programmes. Delhi, India: Ashish Publishing House.
- Pandey, R. S., & Advani, L. (1996). Perspectives on disability and rehabilitation. Delhi: Vikas Publishing House.
- Shapiro, J. P. (1993). No pity: People with disabilities forging a new civil rights movement. New York: Times Books (Random House).
- Scotch, R. K. (1984). From good will to civil rights: Transforming federal disability policy. Philadelphia, PA: Temple University Press.
© The Disability History Association, 2008