Enabling an Open Mind: Conducting Disability Research in India

Posted on Tuesday, June 15th, 2021

Written by Dilshan Fernando

Research usually begins with a quest to learn something about others. But in my case, I learned something about myself at the same time.

In 2019, I was fortunate to spend a month talking to people with disabilities (PWD) in Delhi and Lucknow. This was part of a larger research project conducted by two think tanks, LIRNEasia in Sri Lanka and Vihara Innovation Network in India that were keen to understand how information and communication technologies (ICTs) can improve the life conditions of PWD.

From the beginning of the previous decade, there has been a growing interest to find how ICTs can reduce long-held inequalities – disability being one – in developing countries. Equal access to technology was widely viewed as a path directing towards well-being for the marginalized.

PhD student Dilshan Fernando

Smoking Campus

My research journey marked the first time that I was at an Indian university, even though I am a South Asian. Sunil* drove me and Amandeep,* my fellow-researcher from Vihara who knew the vicinity well in his old Toyota through the university gates, to his class. He was taking master’s level classes in sociology. We went to Sunil’s class on Marxism. The classroom was pale-looking, Sunil’s classmates were focused on the words of the instructor, and we were late. Sunil was a hearing-impaired student, having cochlear ear-plants. There was no T-coil system or sound amplifier established in the class for Sunil to hear well about the history of the class struggle in Marx. I couldn’t hear well what the instructor was saying either. The overall mood of the room tended towards lethargy.

To my surprise, students smoked openly on campus premises. And that set the tone of our research engagement with Sunil. Our focused ethnography with Sunil happened with mostly Sunil smoking while answering our questions. Our conversation was about politics of the deaf people in Delhi. Sunil’s most assertive enunciations were after a deep inhale, with the answers accompanied by a thick stream of exhaling smoke. He said that the people with hearing impairments in Delhi refused to learn sign-language as a protest for not recognizing it as a legitimate language, rather than a stand-in for the lack of speech. Sunil seemed indifferent about it, rather reluctant to show where he stood with regard to the politics of his brethren, but caring deeply about their concerns. What was serendipity to me was that the standardization of sign-language in India, a long-held policy problem was suddenly made a straw-man issue. Indian sign-language was a lively site in which a struggle was looming. I didn’t know until I met Sunil that I had implicitly treated sign-language as a second language, inferior to spoken language. People with hearing impairments in Delhi thought otherwise.

Literary Scholar of the Phone

Dr. Ranjeet Singh* had a PhD in English Literature from the University of Lucknow. Being blind, he read Victor Hugo and the rest of his favorites as audio books on his phone. He was a visionary as well; he had founded a rehabilitation foundation for visually impaired students in Lucknow. Singh was instrumental in organizing many of our focus groups in Lucknow. He had strong contacts with the visually impaired community and had earned enormous respect for his stature as a pillar of strength for them.

Although digitization is changing most of our world, I have heard from friends and colleagues that digital technologies—although truly innovative—are alienating. Some people say reading newspapers and books in their hard copy versions is significantly different from the e-newspapers or e-books. Others have complained how listening to music on the phone is alienating compared to the live music experience. I had also believed that Les Miserables actual artistic aura cannot be experienced through an alienating technological device; rather, the book had to be held in hand. Singh convinced me otherwise. The aura of art is in one’s subjective disposition, not in the device. At least the pandemic has called on us to accommodate technology that we found off-putting. People with visual impairments started such accommodation long ago. We are late.

The Travel Fanatic

Amandeep and I met Mahesh* in Lucknow’s suburbs, at his house. He was a math teacher, with a lower-body paralysis. We anticipated hearing him as marginalized-PWD discuss his travel-related problems. But instead, we were told that he had a normal life—and had no problem. The study was over, but the discussion wasn’t. Mahesh admonished us about disability and especially about his travel.

Each time I accompanied Amandeep to interview sites, he introduced myself as his fellow researcher from abroad – Sri Lanka. When the respondents heard that I am not from India, they gathered themselves with more focus to answer our questions. They may have thought that our work was an international endeavor. In Mahesh’s case, Amandeep and I gathered ourselves to listen to the story of an enabled life of a traveler. Mahesh had travelled to more than 20 countries. He said he was able to do so because he was rich – hard earned money from his tuition. He showed us souvenirs, little monuments that he had brought from each country he had travelled to. He asked for one from Sri Lanka, now that he had met me. We bonded. Why was it surprising to me that a disabled person in Lucknow suburbs was a travel fanatic?

Disability as a research area happened to me, rather than I choosing it. My India engagement was preceded by a similar engagement in Myanmar, during a longer field work. This was a part of my internship requirement for the Master’s degree in Applied Sociology at Clemson University, which I earned in the spring of 2019. The Myanmar engagement was my first hands-on experience with research on the lives of marginalized PWD in South Asia. In the Myanmar project, I understood that PWD have unique and harsh problems that need imminent solutions. In the India project, I understood that I am part of the problems that the PWD face – the biased mind-set. My PhD in Sociology and International Development at the University of Guelph focuses on remote work opportunities for PWD and the connected social policy issues. I remain committed to ensure that my positionality as an able-bodied person, my unconscious biases, will not impede to address the disabling barriers head-on.

*Actual names are not used to protect the identity of research participants.

Dilshan Fernando is a student writer for CIRCLE. He is in the first year of his PhD at the University of Guelph.

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