ABSTRACT
While members of marginalised communities may be motivated to participate in ethnographic research by the desire to have their stories ‘heard’/seen, find a place in history and transmit their legacy, telling and publishing these stories may also put them and the researchers at risk. This paper discusses the ethical and methodological dilemmas inherent in studies on the Ugandan deaf community’s emancipation and sustainability. A first risk factor resides in the country’s political situation, strategy planning, financial management and pressures on democracy and human rights. Other risk factors are power hierarchies and questionable ideologies on the status of Ugandan Sign Language (UgSL) (factor 2) and the sometimes-scant attention to ethics in development partnerships (factor 3). These risks directly and indirectly enter the research space, for example, when participants warn that their own and the researcher’s safety could be compromised if certain information is divulged, resulting in social isolation, loss of income, and even threats to life and limb. Information sharing, transparency in partnerships, and attention to the status of UgSL are keys in the circumvention of these risks. The ‘ritual dance’ metaphor illuminates the constant and intricate balancing of academic responsibility, the well-being of the community, and the interests of the other players.
Disclosure statement
No potential conflict of interest was reported by the authors.
ORCID
Goedele A. M. De Clerck http://orcid.org/0000-0002-3412-9967
Notes
1 For the research on sustainable development, data collection consisted of document and archive study, participant observation, community discussion groups, and ethnographic interviews with 30 deaf community members in Kampala and Northern Uganda (Lira and Gulu). The study on emancipation was developed in Kampala and Mbale (Eastern Uganda); data consisted of document and archive study, ethnographic interviews with 16 deaf people from the two regions, and two community profile groups of eight participants each.
2 This key practice of externally evaluating the phases of projects is a crucial factor in sustainability and as such is discussed in the final section of this paper.
3 For example, the UNAD lost part of its archives in a fire and during the move to their current offices in 2010. Although we were able to talk to professionals involved with recent teaching projects, we were not able to access in-depth and detailed information through reports and revisions (see factor 2). Documents and illustrations of the community's history, such as the establishment of the first deaf schools and the UNAD, are difficult to find. The personal archives and signed stories of deaf elders and other members have been extremely valuable. Kyambogo is currently building a new library with archive space for digital files and paper-based documents, which is likely to support future research.
4 Specifically, these have included partnerships between the UNAD and USAID (2009–2010) to organise further UgSL training; the UNAD and FAD (Finnish Association of the Deaf) (2008–2016); UNAD, SignoNorway and ODW (Operation Day's Work) (2009–2015); UDEWO (Uganda Deaf Women's Organisation) and Deaf Child Worldwide (2011–2017); UDEWO and the Disability Rights Fund (2012–2013); UDEWO, SignHealth Uganda and Deaf Child Worldwide (2012); and SignHealth Uganda and SignHealth UK (2009–present).
5 Makerere University recently conducted a ‘video-based sign language questionnaire’ on HIV, drug and alcohol use, and access to health care (Okiror, Citation2012); the report is still in progress.
6 For further information on the ‘Partnership of ADD UK and ADD Uganda’ see Lutalo-Kiingi and De Clerck (Citation2015b).