Conducting “Deaf-friendly” Research with Children

Jennifer M. McGuire (Doshisha University)
[email protected]
NEOS Volume 12: Issue 1, April 2020

Return to Table of Contents

At the World Congress of the World Federation of the Deaf in Paris, Ardavan Guity presented a co-authored paper entitled “Ethical Concerns of Sign Language Work with the Deaf Communities: One Deaf Iranian Man’s Journey from Researched to Researcher” (Hochgesang and Guity 2019). Guity spoke about researchers who came to his school in Iran, conducted research on the students, and then left behind questions and confusion. Guity and his peers were not adequately informed about the process or their critical role within it. He vividly described his sense of disempowerment as a research subject. Guity’s story exemplifies the psychological harm researchers cause when they research on deaf children rather than with them.

What Guity described is not an anomaly. Asymmetry in social power is intrinsically present whenever adults conduct research on children. This can be magnified by hearing researchers’ attitudes, which may mirror their society’s audism and pathologizing deficit views of deafness (see Graham and Horejes 2017).[1] Previous research with deaf individuals demonstrates that participants may experience disempowerment during the research process and are generally distrustful of hearing researchers (Singleton et. al 2014; 2017). Power imbalances, coupled with language inaccessibility, results in deaf people lacking control in research about them.

Hearing researchers with little understanding about deaf communities have conducted “ethically abusive” research (Harris et. al 2009). As not only members of this marginalized group, but also minors, deaf children could be considered especially “vulnerable” to such abuse. However, depicting children as victims undermines their competence (Thomas and O’Kane 1998)—regardless of deafness. Further, an overprotective stance not only fails to respect children’s competencies, it can also exclude them from studies about their lives (Alderson and Morrow 2012; Morrow and Richards 1996; Skelton 2008). A deaf-friendly, child-friendly research approach recognizes children’s competencies, considers the diversity of linguistic backgrounds, and engages participants in the research process from inception to dissemination. While there are numerous principles and processes that constitute a deaf-friendly, child-friendly research approach, I use the informed assent process as one example to illustrate how the foundation of this approach rests on the respectful relationship between researcher(s) and deaf children.

Deaf Children as Informed Research Collaborators

Informed assent is not a task to complete to begin ethnographic research. Obtaining informed assent is an ongoing process which can reveal children’s capabilities to act as “research collaborators” in genuine partnerships (Conroy and Harcourt 2009). Children’s human rights, including the right to be consulted on matters affecting their lives, are guaranteed by the 1989 UN Convention on the Rights of the Child. Minors may be legally unable to consent to research participation in most cases, but this does not void their right to assent or dissent.

Children have the capacity to assent if the researcher establishes the necessary conditions. In the mid-1980s, the “new” sociology of childhood positioned children as agentic social actors, but this agency does not preclude the need for “child-friendly” methods and research techniques (Allerton 2016). Their developing capabilities can be acknowledged without underestimating their competency. In the same way, deaf children’s potential linguistic challenges can be acknowledged without framing these children as vulnerable or incompetent.

Deaf-friendly research is conducted with instead of on deaf people (Singleton et. al 2017; emphasis in original). Researching with deaf people requires that research practices be “culturally/linguistically accessible” (Singleton et. al. 2014, p. 64). To provide informed assent, children must be given appropriate and accessible information (Dockett and Perry 2011). As I describe in the next section, it is problematic to assume that deaf-friendly informed assent is necessarily made accessible by using the local sign language alone.

Informed Assent across Communication Modalities

Guity’s presentation was a catalyst to revisit my experiences seven years prior as a novice ethnographer working with deaf children/youth in Japan. While my research during that initial 15-month period primarily involved mainstreamed students and emerging signers, I also had the opportunity to conduct participant observation in the junior high school division of Japan’s only bilingual (Japanese Sign Language-Japanese)-bicultural (Deaf-Japanese) school for the deaf, Meisei Gakuen. This school was also one of the research sites in the “Deaf Kindergartens in Three Countries: Japan, France, and the United States” study, led by Joseph Tobin, Thomas Horejes, and Joseph M. Valente.

Deaf-friendly educational research includes deaf educators in the process (Singleton et. al 2017). As a hearing white American adult conducting research with deaf Japanese children, my positionality as an outsider was unmistakable. As an inexperienced fieldworker, I was fortunate to have the support (and patience) of the deaf educators in the school. I can now identify that my approach to gaining assent was deaf-friendly insomuch as it was facilitated by the cultural brokering of these educators as well as the students’ subjectivities.

Context plays a significant role in determining a child’s agency and competency. Since research with deaf children often occurs in educational settings, the school is an important context. At Meisei Gakuen, the junior high school students were fluent JSL signers who were implicitly taught to appreciate “Deaf Gain” (Bauman and Murray 2014) and empowered to ask questions. During the parallel process of gaining consent from parents/guardians and assent from junior high school students (ages 12 to 15), homeroom teachers helped to explain the project and the students’ role within it. The accessible and straightforward “child-friendly” information leaflet that I had prepared in Japanese was only a starting point. Meisei Gakuen’s deaf educators’ emic understandings were invaluable in allowing these students to make informed decisions.

My experience there does not reflect the norm in Japan—or elsewhere in deaf education. Deaf-friendly protocol tends to be preoccupied with accessibility via sign language; however, this overlooks the situation in many schools today. Unlike in Meisei Gakuen where students are instilled with pride in being deaf and surrounded by deaf role models and JSL-fluent hearing allies, the majority of deaf children today are not exposed to cultural models of deafness or to sign language(s) during their education. Children in schools for the deaf may be taught through oral/aural methods (i.e. speech, lipreading, and auditory training). Moreover, increasingly children worldwide are being separated from signing peers and deaf adults in deaf schools as a result of “educational inclusion” through placement in local schools (Murray et. al 2018). The World Federation of the Deaf (WFD) estimates that only one to two percent of deaf people are educated through sign language (WFD 2020). Therefore, the emphasis on signing as best deaf-friendly practice does not align with children’s linguistic realities.

Accordingly, deaf-friendly, child-friendly social research should be flexible, inclusive, and adaptive to a spectrum of communication needs and preferences. To seek informed assent, research should be clearly explained across and via multiple communication modalities (sign, speech, and print). Text, visual aids, and opportunities to confirm and re-confirm information in the child’s chosen communication modalities can ensure that deaf children of all linguistic backgrounds understand their participation in a research project and their right to opt out of it. Positioning deaf children as research collaborators means providing them opportunities to engage in the process of creating and implementing an inclusive child-friendly assent procedure.

Toward a New Decade of Deaf-friendly, Child-friendly Research

Anthropologists studying within deaf communities engage with theories, concepts, and literature from a wide range of disciplines, including deaf studies, disability studies, sociolinguistics, and education studies, and therefore need to be aware of the debates occurring within these fields. The 2000s saw an emphasis on community-engaged approaches (Singleton et. al 2015) and a call to “decenterize hearingness” with research conducted “by Deaf, for Deaf, and with Deaf people” (Harris et. al 2009, p. 116). Harris, Holmes, and Mertens state that this “does not necessarily exclude hearing researchers” while emphasizing the authority of deaf researchers in deaf-hearing researcher collaboration (2009, p. 116). Critical examinations of the role of deaf scholars along with deaf ontologies and epistemologies have also emerged in recent years (e.g., Kusters et. al 2017).

Deaf ethnographers can reflexively analyze their positionalities (Graham and Horejes 2017; Kusters 2015; Valente 2014), using these insights to bridge gaps between adult researchers and children. In contrast, with the exception of CODA (children of deaf adults), hearing researchers embody a hearing habitus and subjectivity. What does this mean for hearing anthropologists conducting research with deaf children? Although many anthropologists today research within their “own” communities, a tradition of outsiders who contrast etic perspective with emic ones remains. Can hearing anthropologists work independently in ethnographies of deaf children? Moreover, should they? Is it possible to create balanced partnerships between hearing adults and deaf children? These are some of the questions to be answered in the coming decade of deaf-friendly, child-friendly research.

References

Alderson, Priscilla, and Virginia Morrow. 2012. The Ethics of Research with Children and Young People: A Practical Handbook. London: Sage Publications, Ltd.

Allerton, Catherine, ed. 2016. Children: Ethnographic Encounters. London: Bloomsbury.

Bauman, H-Dirksen L., and Joseph J. Murray, eds. 2014. Deaf Gain: Raising the Stakes for Human Diversity. Minneapolis: University of Minnesota Press.

Conroy, Heather, and Deborah Harcourt. 2009. “Informed Agreement to Participate: Beginning the Partnership with Children in Research.” Early Child Development and Care 179 (2): 157-165.

Dockett, Sue, and Bob Perry. 2011. “Researching with Young Children: Seeking Assent.” Child Indicators Research 4: 231–247.

Graham, Patrick J., and Thomas P. Horejes. 2017. “Why Positionality Matters in Deaf Education Research: An Insider Ethnographic Perspective.” In Research in Deaf Education: Contexts, Challenges, and Considerations, edited by Stephanie Cawthon and Carrie L. Garberoglio, 55-74. Oxford: Oxford University Press.

Harris, Raychelle, Heidi M. Holmes, and Donna M. Mertens. 2009. “Research Ethics in Sign Language Communities.” Sign Language Studies 9(2): 104-131.

Hochgesang, Julie, and Ardavan Guity. “Ethical Concerns of Sign Language Work with the Deaf Communities: One Deaf Iranian Man’s Journey from Researched to Researcher.” Presentation, World Congress of the World Federation of the Deaf, Paris, France, July 25, 2019.

Kusters, Annelies. 2015. Deaf Space in Adamorobe: An Ethnographic Study in a Village in Ghana. Washington, DC: Gallaudet University Press.

Kusters, Annelies, Maartje De Meulder, and Dai O’Brien, eds. 2017. Innovations in Deaf Studies: The Role of Deaf Scholars. Oxford: Oxford University Press.

Morrow, Virginia, and Martin Richards. 1996. “The Ethics of Social Research with Children: An Overview.” Children & Society 10: 90-105.

Murray, Joseph J., Maartje De Meulder, and Delphine Le Maire. 2018. “An Education in Sign Language as a Human Right?: The Sensory Exception in the Legislative History and Ongoing Interpretation of Article 24 of the UN Convention on the Rights of Persons with Disabilities.” Human Rights Quarterly 40 (1): 37–60.

Singleton, Jenny L., Gabrielle Jones, and Shilpa Hanumantha. 2014. “Toward Ethical Research Practice with Deaf Participants.” Journal of Empirical Research on Human Research Ethics 9 (3): 59–66.

Singleton, Jenny L., Gabrielle Jones, and Shilpa Hanumantha. 2017. “Deaf Community Involvement in the Research Process: An Examination of Barriers and Strategies in Research in Deaf Education.” In Research in Deaf Education: Contexts, Challenges, and Considerations, edited by Stephanie Cawthon and Carrie L. Garberoglio, 75-92. Oxford: Oxford University Press.

Singleton, Jenny L., Amber Martin, and Gary Morgan. 2015. “Ethics, Deaf‐Friendly Research, and Good Practice When Studying Sign Languages.” In Research Methods in Sign Language Studies: A Practical Guide, edited by Eleni Orfanidou, Bencie Woll, and Gary Morgan, 7-20. West Sussex: John Wiley & Sons, Inc.

Skelton, Tracey. 2008. “Research with Children and Young people: Exploring the Tensions between Ethics, Competence and Participation.” Children’s Geographies 6 (1): 21-36.

Thomas, Nigel, and Claire O’Kane. 1998. “The Ethics of Participatory Research with Children.” Children & Society 12: 336-348.

Valente, Joseph M. 2014. An “In-Betweener” Ethnographer: From Anxiety to Fieldwork Methods in a Cross-Cultural Study of Bilingual Deaf Kindergartners. In Practicing Disability Studies in Education, Acting Toward Social Change, edited by David J. Connor, Jan W. Valle, and Chris Hale, 103-120. New York: Peter Lang.

World Federation of the Deaf (WFD). “Human Rights.” Accessed April 12, 2020. https://wfdeaf.org/our-work/human-rights-of-the-deaf/


Author contact: Jennifer M. McGuire (Doshisha University), [email protected]

To cite this article: McGuire J. 2020. Conducting “Deaf-friendly” Research with Children. NEOS 12 (1).

To link to this article: http://acyig.americananthro.org/mcguire_neos_12-1_april-2020/

[1]  Following a growing number of academics who are moving away from the static and dichotomous d/Deaf distinction—where “deaf” is used for people who do not associate with deaf communities and “Deaf” for culturally deaf individuals—I use “deaf” throughout this article not to echo medicalized views, but to respect the fluidity of deaf identities and subjectivities.

%d bloggers like this: