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Medical anthropologist studies perception of disabilities in India

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Michele Friedner, Ph.D., above, delivers a guest lecture at the University of Jyväskylä in Finland in November 2014. PHOTO CREDIT: STONYBROOKMEDICINE.EDU

In her new book called “Valuing Deaf Worlds in Urban India,” Stony Brook University medical anthropologist Michele Friedner explores not only the ways in which deafness and disability are perceived, but also the ways in which these individuals are valued in the postcolonial society.

“Anthropology is very important because it allows us to think about questions of sameness and difference and to think about how other people’s experiences might be different from ours,” Friedner, who has been researching the experiences of deaf and disabled individuals in India since 2003, said. “Anthropology forces us to consider and reconsider how we know and what we know, and it gives us the tools for analyzing.”

A professor in the School of Health Technology and Management and a member of the Society for Disability Studies, Friedner began her journey at Brown University, where she earned her B.A. in religious studies in 2000.

“I majored in religious studies and focused on Indian religion,” she said. “It was interesting to look at India as a place that has been constantly changing—change from the very beginning, in terms of colonialism, development, and economic growth.”

Six years later she earned her Master of Arts in anthropology from University of California, Berkeley, and in 2011 she earned her Ph.D. in medical anthropology from University of California, San Francisco. She then went on to conduct her postdoctoral research at MIT in 2014.

Today, she is professionally associated with the editorial board of Disability Studies Quarterly and the editorial collaborative of Somatosphere: Science, Medicine, and Technology.

Growing up in Jackson Heights, New York—a cultural melting pot resting in the heart of Queens—Friedner was able to experience wide-scale diversity at an early age.

“Most of my friends growing up were actually from India,” she said. For this reason, she was driven to study the country and all it had to offer, from its religion and values of interdependence, to its social, moral and political structure.

She found, however, that it was not enough to conduct idle research and form assumptions based on preconceived notions. The anthropological work she was interested in required communicating with individuals by spending time with them in their native land. It required her traveling to India nearly every year since 2006 and living in the country for two years, once from 2008-2009 and again from 2013-2014.

“We have a very specific view of deafness and disability in the U.S.,” Friedner said. “Deafness is considered a political disability here, and I wanted to see if that was the case in India too. When I got to India, I was fascinated to see that a lot of the discourse there was the same as in the U.S.”

She said that only certain groups of people used such isolating language (i.e. labeling deafness or disability as a legal or political issue) and that those groups were often those who had access to westernized education and social media that allowed them to communicate internationally. Even so, she identified some key misconceptions about the general perception of deafness and disability in India.

“People think that deafness and disability are viewed very negatively in India, that those who are deaf or disabled are experiencing very bad karma, have done something terrible in their previous life or that it’s a result of how backward they think India is in the way it views people,” Friedner said.

“In fact,” she said, “what I found in a lot of cases was that people who are deaf and disabled are treated better in India than they are here [in the U.S.].”

Providing the Americans with Disabilities Act as an example, she said that deafness and disability has become a largely legalistic issue in the States and that this is an unfortunate situation because it prevents an “informal, interpersonal means of communication.”

She touched on a unique experience she encountered while researching in India of a deaf blind man who worked in a government bank making photocopies.

“People would come over to him and give him the paper they wanted him to copy, and they would trace in his palm the amount they needed and the size of the paper,” she said.

She regarded this instance as a very nice interpersonal relationship and said that such informal, everyday accommodations were not uncommon.

But local businesses are not looking to give relief and equal opportunities to deaf and disabled citizens, Friedner said. Such corporations are exploiting this force of disabled workers.

“They don’t pay very well and the jobs are very unstable because of the economy,” Friedner said. “These companies have realized they can hire disabled people as a new force of immobile workers. It looks good for the company and the customers who read this in newspapers see how wonderful it is—but in fact, these are not very good jobs.”

She added that in this way, the deaf and disabled are forced to carry the brunt of manual labor. Citing the Specially-Abled KFC in India, which opened in March 2013 by the Yum! India team and “received the Presidential award from India’s President Pranab Mukherjee for their outstanding performance as an employer of people with disabilities,” Friedner said the deaf and disabled are often trapped in jobs they do not like or in positions in which they are at the mercy of big businesses who thrive upon their disabilities.

Similarly, she mentioned the United Nations Convention on the Rights of Persons with Disabilities (UN CRPD) and how its comprehensive new human rights treaty is being signed with great fanfare, but little focus on the specific values of each culture at play.

“India has signed it and promoted it,” she said. “Interestingly, the U.S. has not signed it and refuses to sign it, because it says [the treaty] is going to usurp American sovereignty. The question is, who’s really benefiting, because in India, disability rights laws have not been changed and the value system is very different.”

Essentially, Friedner said, it is important to determine whether creating a universal treaty that meets all demands and protections of deaf and disabled persons around the world is even possible, taking into account the vast differences in values and knowledge systems of each society.

“So much of it really does depend on the context in which people live,” she said. “One thing that is very unique about deaf people across the world that I’ve encountered, is the desire to communicate, and make meaning and understanding happen.

Because deaf people are typically excluded in the mainstream environment in the sense of communication, they are often very skilled at making communication happen. The ability to gesture, mime, and be very creative about making meaning happen is not so widely seen in every group of people.”

She mentioned how interesting it is to see how the deaf and disabled are often on the vanguard of change and the role they have played in technology and development in general.

She also mentioned that most deaf and/or disabled people do not want to be seen or thought of as inspiring or special merely because of their disability. That, she said, is yet another form of pity that ties into the poor identity policies in the U.S.

“It is also a burden to the disabled themselves, and it comes to the point when we have to reexamine how we think about difference,” Friedner said.

She said that overall, technology is not always a good thing, as in the case of the rising IT jobs that are not as wonderful as they are made out to be.

She also said that people who work in technology development are very interested in finding ways to eradicate deafness by things like cochlear implants, but that this is not what most deaf people she has spoken with want. What they want is a more universal reliance on sign language and an ongoing effort to make communication possible, regardless of their disability.

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