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10/09/2015  |   3:00 PM - 4:15 PM   |  Andrew Foster Auditorium

Counteracting Stigma: Social Identity, Culture, and Hearing Health

This paper discusses sociocultural elements of an interdisciplinary project implementing universal newborn hearing screening in Kenya. We seek to improve opportunities for those diagnosed with hearing loss through community-based outreach and follow-up services that will combine clinic visits, home visits, and mobile phone technology. Our primary goal is to develop a system that will be sustainable throughout Kenya, and applicable in other countries. Our design addresses stigmatization of those with hearing loss, leading to marginalization and denial of basic human rights such as access to healthcare, education, and full participation in society. Ethnographic interviews conducted with 70 healthcare workers, adults with hearing loss, parents of children with hearing loss, social workers, and volunteer interpreters indicate that: • Diagnoses of hearing loss are often received late – when the child is of school age or even later. • Traditional beliefs and lack of support services have led to the isolation of those with hearing loss • Stigma leads some parents to remove visible markers of difference such as hearing aids. • Stigma results in some children being “hidden” by their families, both to “protect” the child and to avoid shunning of the family. • Stigma, in combination with economic factors, may keep families from sending children with hearing loss to school. We are integrating medical and sociocultural approaches in outreach and follow-up teams (consisting of adults who deal with hearing loss in a variety of ways, parents of children with hearing loss, and hearing health professionals) to reduce stigma, provide positive role models for affected children and their parents, and lead to more effective provision and use of services. By ensuring early diagnosis and care, this program will gradually and profoundly change the way deaf and hard of hearing persons in Kenya perceive themselves and are seen, heard, and incorporated into society.

• How do traditional beliefs, stigmatization, and identity intersect with hearing health?
• How can providers of hearing healthcare help to counteract the negative effects of stigmatization, and ensure that people with hearing loss have access to basic human rights?

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Susan Shepherd (Primary Presenter), Indiana University Indianapolis, sshephe@iupui.edu;
Susan Shepherd is a sociocultural linguist who has been working in the Deaf community in Western Kenya since 2009. She is part of an interdisciplinary team initiating newborn hearing screening in Kenya. She is an Associate Professor of Linguistics at Indiana University - Indianapolis where she developed a degree program in American Sign Language/English Interpreting. Her research encompasses issues related to language, oppression, and human rights, with particular attention to stigmatized languages and language varieties.