Interview

Volume 2 Issue 23 - December 01, 2004

From charity to self-advocacy: The emergence of disability rights movement in India

Meenu Bhambhani has finished probably the first-of-its-kind-study in India . Her thesis, titled ‘From charity to self-advocacy: The emergence of disability rights movement in India ', analyses the emergence of a self-representing disability rights movement as a crucial factor towards changes in self-perception and group affiliations of disabled persons in India.

She talks about her study and the factors that led, irrevocably, to her pursuing this path in life.

Tell us something about your background.

I always struggle with a question like this because I keep wondering if people want to know about my academic and professional background or my family background. But, I guess, this question is important because a person's academic and professional background is shaped by his or her family background.

I come from a middle-class yet an extremely supportive and loving family. I am the eldest of three sisters. My father is a retired central government employee and my mother, apart from being a homemaker, is my strength and my staunchest supporter. My parents are not very educated. I was born at a time when joint family was a norm, the finances of the family were meagre and education of girl child in the family was low on priority. But, in my case, my disability came to my advantage. Had I not been disabled, perhaps, my parents wouldn't have fought against the world to give me the best possible education that they could afford. They always felt, and rightly so, that books will be my route to prosperity.

I am the first female in my family to have not only a postgraduate degree but also a Ph.D., and today a professional degree as well. Because of me, my sisters also got better education and thus opportunities. (I have done my Ph.D. in English Literature from University of Rajasthan, Jaipur, and recently finished M.S. (Master of Science) in Disability and Human Development from University of Illinois in Chicago.)

Why are you interested in disability?

Shall I give a simple answer that I am interested in disability because I a have a disability myself? Well, life's struggles wouldn't have been meaningful and enjoyable had I not been disabled. My interest in disability did not develop overnight. It developed gradually.

Academically, I was not a very good student till about Standard 8. There was no environment at home and no one to either help or correct mistakes. Teachers in school were not very encouraging and going to school used to be an ordeal. Because of my disability, from a young age I was aware that I was different and would have to carve out a different path for myself. I realised I would have to study to get a job. There was a self-imposed pressure to start earning. I started working in Life Insurance Corporation in 1996 and simultaneously continued with my Ph.D. In the same year I saw Javed Abidi's letter in The Daily Pioneer newspaper about the Persons with Disabilities Act. I wrote to Mr. Abidi for a copy of the Act and he wrote to me a very encouraging letter invoking that young educated people like me must contribute to creating an equal, accessible India for people with disabilities. Disability leadership had always been in the hands of non-disabled people and it was high time that we, the disabled people of India, started taking our own decisions. Mr. Abidi is my role model, my mentor, and my guru. He taught me to develop an interest in disability in a professional and social way.

Why do you think did the disability movement take so long to take off in India?

The disability movement in India owes its emergence, in bits and pieces, to developments in the international disability arena and various UN resolutions. Its taking off was dependent on the emergence of a strong leadership, and a handy tool in the form of Persons with Disabilities Act, 1995. Disability movement in India is a post-legislative phenomenon unlike other countries like the US where the movement culminated in the passage of Americans with Disabilities Act.

What does the history of disability teach us?

It teaches us that like every other minority group – women, dalit, tribal, racial and ethnic minority etc -- we will have to write, document and chronicle our own historical past and political present and future so that we can leave a legacy for the future generations of disabled and non-disabled people. Without history there is no identity. As Jim Charlton says, “ Self-identification with disability is difficult because there is no history of disability -- it has not been written and it is not known -- nor is it acknowledged.”

What are the social and cultural ramifications of disability?

Being disabled can be expensive and if you belong to poor class of society; your disability experience can become much more disempowering and extreme. In a society like ours, being a woman with a disability and coming from a tribal or dalit social background can result in further denial of opportunities and access to agencies. It may open doors of opportunities in one area and deny access to several other traditional agencies. In my fieldwork, as part of my World Bank project, I observed that more women with physical disabilities were getting college education than men with disabilities. Both men and women came from similar socio-economic backgrounds yet men with disabilities had abandoned their education due to financial constraints. But a lot of women with sensory impairments like hearing and visual disability were over-protected owing to their vulnerability and denied any opportunities of education and vocational rehabilitation.

What can be done to take disability movement into the rural areas, beyond the urban middle class confines?

There are no easy solutions. I guess we need to sensitise NGOs working in rural areas to start looking at disability and add it as a component in their field of work. Once there is awareness, people with disabilities can themselves carry the movement forward.

Is a national disability movement feasible?

Disability is a very ubiquitous category. There are several other identities that take priority over disability identity. Within disability also, the needs of various disabilities clash with each other and therefore it is difficult to make disability a mass movement. World-over, disability movement has primarily remained an urban phenomenon.

Why are there so few organisations of disability advocacy?

Again there is no easy answer. There is little funding available for disability advocacy. Disability is so invisible that it is difficult for organisations to show tangible results. We need more leaders to carry the movement forward.

Are disabled women doubly marginalised?

Again, it is relative. In my case, I believe, I got better education opportunities because I had a disability. But choices, options and thus opportunities are few and far between if you are a disabled woman.

What have been your observations/experiences in the U.S.A.? Can anything be applied to India ?

I am always very conscious when I try to look at my disability experience in the U.S.A. and compare it with India. We cannot have the U.S.A. as a model for replication. There are a few things which, I feel, can be easily applied in India in a more localised form. I understand that we cannot change our public transport entirely but we can definitely introduce some taxis and some buses, in every city, that are accessible and can ply on certain routes. In India, I never had a friend or a class-mate with a any other impairment like cerebral palsy, blindness or hearing and speech impairment. In the U.S.A., I had classmates with all these and other psychiatric disabilities as well. Every University had a system of accessible transportation and an Office of Disability Services, which not only provided academic accommodations to students with disabilities but also generated jobs for other students with disabilities. This, I believe, is doable in India as well.

What does the future hold for disability in India?

Every movement works in phases and progresses in leaps and bounds. Disability movement I would say is at its peak today. It will have its lows but it will never end because it will always be alert and responsive to situations of strategic importance of disability.

What are your future plans? How do you plan to carry forward your research?

I have now made disability my vocation too. I enjoy doing disability research. My future plan is to take D.P.I.-India's philosophy of 'Nothing about us, without us' forward by activating its chapter here in India. I wish to consolidate the movement through academia.

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