Collaborative North-South disability research presents methodological challenges, especially when funding comes from institutions in the global North for fieldwork in the global South. One potential problem is connected to the Northern origins of social science methodologies (including Disability Studies), which developed in the global North without input from Southern theories or experiences (Ghai 2012; Goodley 2013; Grech 2016; Meekosha 2011). As such, the wholesale transfer of methodologies from North to South runs the risk of ‘scholarly colonialism’ (Meekosha 2011: 668), making it essential to incorporate Southern perspectives into cross-cultural disability research (Grech 2011; 2016). In Africa, disability scholars have responded by invoking ubuntu, a Zulu term signifying a communal worldview in which ‘a person is a person through other persons’ (Shutte 1993: 46). From its Zulu origins, ubuntu has been taken up as a general term for traditional African community, which is assumed to be inclusive and accepting of all community members, including persons with disabilities (Bannink Mbazzi et al. 2020; Berghs 2017a; Chataika and McKenzie 2013; Oppenheim 2012). One recent study by Maria Berghs, for example, states that ‘African understandings of ubuntu’ view disability ‘as part of an enabling human diversity’ (Berghs 2017a: 4). Berghs cites an example from Ghana in which a mother attributes her child’s disability to witchcraft. Viewed through the lens of ubuntu, Berghs does not seek to understand why the mother as an individual holds this belief. Instead, she asks why ‘ubuntu is not socially functioning for that mother and child’ at the community level. The answer lies in the destruction of African community by the violence of colonialism, which left a legacy of ‘poverty and stigma.’ Into the void stepped Pentecostalist churches, who blame disability on witchcraft and profit from ‘warehousing’ children with disabilities under the guise of spiritual treatments (Berghs 2017a: 6). For Berghs, the solution is to revive ubuntu and, by extension, eliminate disability as a social construct through the re-integration of persons with disabilities into their traditional, inclusive communities.
The embrace of ubuntu has emerged within the broader context of perceived Northern and Southern stereotypes about disability in Africa, both negative and positive. On the negative side, many commentators—especially NGOs and media outlets—portray Africa as a site of pervasive cultural stigma towards disability (Morgan 2015; Mostert 2016). In response, researchers call for the participation of persons with disabilities as active agents in the production of culturally specific knowledge and the revival of traditional community (Owusu-Ansah and Mji 2013). But the danger is that these scholars might inadvertently reproduce another stereotype of Africa and disability: an Arcadian myth that essentializes African tradition as naturally inclusive of disability. In trying to escape one of the dominant Northern stereotypes about Africa, therefore, this approach runs the risk of inadvertently reproducing another (Goodley and Swartz 2016). As such, ubuntu can be problematic as a tool for developing Africa-based methodologies. However, it is also potentially very useful. First, fieldwork based on ubuntu principles emphasizes research carried out by Africa-based researchers, with agendas developed in collaboration with participants (Berghs 2017b). Second, ubuntu reorients the focus of research projects away from individual experiences towards relations between individuals as members of cultural communities. Third, it focuses attention on important ideals of social inclusion, including the ‘need to embrace ubuntu principles of compassion, reciprocity, dignity, humanity and mutuality in the interest of building humanism, maintaining justice and mutual caring’ (Chataika and Mutswanvga 2016: 128). In normative terms, we agree with Berghs (2017a) in that disability can be ‘linked to ubuntu in terms of restorative ethical practices to ensure the diversity of what means to be human.’ Ubuntu-focused research also directs attention to the question of whether social relations function to include persons with disabilities as part of diverse communities (Bannink Mbazzi et al. 2020; Berghs 2017a). This is not to say that ubuntu should replace international research norms. Instead, we believe that internationally accepted methodologies should be preserved but adapted to local contexts and cultures (Seehawer 2018). Straddling the North-South divide, after all, is a reality for many researchers, including critics of Northern methodologies (e.g., Nguyen 2018). Similarly, we do not seek to reject Northern methodologies altogether but rather to adapt them to cultural contexts in the global South (e.g., Grech 2009; Groce 1999; Ingstad 2001; Ingstad and Whyte 1995; Nicolaisen 1995).
A note of caution is necessary, however, because adapting Northern methodologies to fieldwork in the global South raises significant challenges. Ethical concerns are especially important, especially considering the need to protect the rights of vulnerable and disadvantaged participants while requiring approval from Research Ethics Boards (REBs) in the global North (Khowaja-Punjwani 2015). For example, researchers must think carefully about obtaining genuine and appropriate informed consent and conducting fieldwork in a culturally appropriate manner without violating international principles of ethical research (Igoumenidis and Zyga 2011; Stapleton et al. 2014). In some cases, ethical concerns from the global South should inform standard practices from the global North. In other cases, it might be best to maintain Northern ethical frameworks, because ‘traditional’ cultural practices are not always more ethically sound than norms in the global North. To cite one example, in African settings recruitment and consent often start with the chief or elders of a community, who—as customary trustees over community affairs—recruit participants through public announcements and grant consent on behalf of the community. This process, which is justified as ‘traditional,’ removes individual consent and runs the risk of forced rather than voluntary participation (Strang and Mixer 2015), which conflicts with international ethics protocols. It also can have serious consequences for participants’ responses because they might hesitate to give answers unfavorable to chiefs and elders (Woodsong and Abdool Karim 2005).
What does this mean for our project? As a team with three Ghanaian researchers, two of whom are based in Ghana, we are aware of the complexity of research that cuts across the global North and South, as well as the dangers and pitfalls of trying to find methodologies from the global South to complement approaches based on international norms. For this reason, we were careful not to base our project on a priori assumptions about the relevance of Northern methodologies or ideas about communalism in Africa, such as ubuntu. We also were mindful of the reality of building a collaborative partnership in Ghana with funding housed institutionally in a postsecondary institution in the global North. As a result, like Fisher and colleagues (2016), we sought ‘to respect local research priorities and methods, but with the intention of publishing the results nationally and internationally’ (571). Our goal, therefore, was not to jettison methodologies from the global North but rather to adapt them to Ghanaian settings. To this end, we prioritized dialogue between team members in the global North and South, as well as flexibility in research design and fieldwork, to privilege the lived experience of disability in Ghana while also incorporating international methodological standards. This approach, which has been used by other cross-cultural disability researchers (e.g., Fisher et al. 2016; Samuel and Mariaye 2014), involves reflecting continuously on the research process through conversations between researchers in Ghana and Canada and adjusting fieldwork when deemed necessary. In this process, adaptation is key; it is not a question of rejecting international methodological approaches but rather adapting them by incorporating Ghanaian socio-economic frameworks and cultural contexts into our fieldwork methods to produce the best possible results. Our ambition in this article is to provide insights into the methodological challenges of designing and carrying out a project along these lines.
The discussion that follows is grounded in fieldwork undertaken in 2018 and 2019 for a project on the oral history of disability rights in Ghana. Funded by a grant from the global North, the fieldwork was carried out by teams of research assistants (RAs) organized by two Ghana-based disability scholars (Augustina Naami and Wisdom Kwadwo Mprah). Recruitment targeted persons with disabilities who have had leadership experience in the Ghana National Association of the Deaf (GNAD) and the Ghana Society for the Physically Disabled (GSPD). When completed, the project will produce a history of disability rights in Ghana, offering a window into the lived experience of disability over the past 60 years. We are currently writing up the data for publication and have posted selected life narratives to a project website. It is the first research of its kind in Ghana and one of few similar projects in Africa as a whole.
We have organized the discussion below into three themes—ethics, recruitment, and data collection/analysis—guided by three questions:
We conclude the article with reflections on the implications of our experience for North-South collaborations in disability research.
Researchers have long warned about transferring research methodologies from North to South without modifying them to suit Southern contexts (e.g., Brislin 1980; Midgley 1990). More recent work highlights socioeconomic conditions in the global South that make modifications essential, including social and economic inequalities, lower levels of formal education, and higher vulnerabilities and/or inadequate human rights protections (Khowaja-Punjwani 2015). In addition, research can be complicated by the conceptual and linguistic challenges of translating constructs from English to local languages. These challenges are more significant in countries such as Ghana where there are multiple languages. Unfamiliarity with local cultures and languages can greatly increase the difficulty of obtaining valid and comparable results from research (Awusabo-Asare 1988). In response, researchers have called for localising methodologies to suit local socio-cultural conditions and to include community members in the research process (Amerson and Strang 2015). We followed this advice in framing our methodologies, working to develop the best approach for Ghanaian socio-cultural and economic conditions. This was possible because three out of the four researchers are Ghanaian, and two are Ghana-based disability scholars and members of the disability communities we studied (deaf and with physical disabilities). The following section presents our challenges and adaptations in the areas of ethics, recruitment, and data collection/analysis.
Funding for the project came from the Social Sciences and Humanities Research Council, a Canadian government funding body. The project is based institutionally at Wilfrid Laurier University (WLU) in Ontario, Canada, which meant that we had to seek ethics approval from WLU’s Research Ethics Board. This particular government grant does not allow institutional partnerships outside the home university, so we could not partner with institutions in Ghana. This meant that the ethics approval process was limited to WLU. However, wherever ethics approvals are granted, ‘the institutional and procedural approach does not always help in negotiating the everyday realities in the field’ (Lunn 2014: 5). Fortunately, as mentioned above, the fact that most members of our research team are from Ghana allowed us to develop our ethics approach from a Ghanaian perspective. In doing so, however, seeking ethics approval in the global North raised several challenges, including (most importantly) the issue of informed consent. To grant ethics approval, Wilfrid Laurier’s Research Ethics Board (REB) required written consent forms in English. These required adaptations in the field. In some cases, the forms had to be translated into a local language (sign and spoken) because the participants did not read English. This was not a problem in most of the regions, because the RAs spoke and wrote the language (Twi) fluently. However, the RAs did not speak the languages of the Northern Region and had to employ local translators, but we minimized the risk of inaccurate translations by recruiting translators with prior field experience. In the case of the deaf participants, ensuring informed consent also was challenging, because they tended to have low literacy levels in their first language, Ghana Sign Language (GSL), and therefore experienced difficulties understanding the concepts embedded in the questionnaires. However, the experience of the RAs and their connections to the participants’ communities helped to overcome this hurdle.
Another issue was confidentiality, which is a standard concern of ethics boards in the global North. This was a particular issue for the deaf participants, whose identities could not be hidden completely because of the need to record the interviews on video (Mprah 2013; Pollard 2002). We addressed this issue by limiting access to the recordings to the RAs who conducted the interviews. The fieldwork teams also worked hard to build trust (elaborated on in the Discussion), which helped in obtaining consent from our participants and motivated them to share their stories publicly as an example for the younger generations. One of the results was that the respondents, especially the older generation, who had been leaders of their organizations, wanted us to share their identities as well as their stories. As the interviews progressed, more and more participants from both GNAD and GSPD requested their identities to be revealed. With approval from WLU’s REB, we modified the consent forms to offer the respondents this choice.
A third issue was whether to provide cash payments to participants. We decided in favour, based on the argument that research subjects in the global South should benefit (financially or in goods or services) from research sponsored by institutions in the global North (Hastings Centre 2004: 22; Koen et al. 2008). In adopting this approach, we agree with London (2005) that Northern researchers have a ‘duty to aid,’ in the language of international development, to their participants (London 2005: 33–35). At the very least, following Molyneux and colleagues, we believe that ‘populations should not be deprived of potential payments simply because of their poverty as this leads to a double inequity: both poverty and inability’ (Molyneux et al. 2012). In setting the payment amounts, we provided enough to cover the expenses of the participants (travel costs, for example) as well as compensation for their time. This is generally acceptable for research involving human subjects (Molyneux et al. 2012). However, in the context of Ghana (and the global South), it is particularly important to provide a level of compensation that avoids exploitation (Mweemba et al. 2018: 9), while not offering so much that the participants are unduly induced to participate (Ballantyne 2008: 179). Undue inducements could have been a significant challenge. However, the Ghanaian members of the research team, who are intimately familiar with the socio-cultural contexts of our field sites, were able to set the payments at amounts that were the most financially and culturally appropriate. Furthermore, the Ghanaian research team, some of whom served as gatekeepers because of their deep familiarity with local social dynamics, were assigned the responsibility of remunerating participants. The list of participants was presented to the researchers who, in consultation with the other members of the research group, agreed on how the funds should be disbursed. Guided by Ghanaian disability researchers with very deep fieldwork experience, this process has worked out well in our research projects in Ghana.
It was important to recruit as many participants as possible from different regions of the country. Covering multiple regions was necessary partly because we targeted disabled persons’ organizations (DPOs) focusing on two disability types, deafness and physical disability, whose founders are scattered around Ghana. The large number of participants also reflected our focus on oral history and current experiences, which meant that the interviews included historical data dating back to the 1960s, as well as current data connected to the DPOs as they operate today. To make wide-scale recruiting possible, the Ghana-based researchers reached out to their contacts and recruited multiple RAs, allowing us to interview 200 participants in 5 regions (Greater Accra, Ashanti Region, Eastern Region, Western Region, and Northern Region), including past and current DPO leaders. Our sampling techniques—purposive and snowball—were important in that they helped to maximize the utility of the data by only recruiting participants who had adequate knowledge. Most interviews lasted between 50 and 90 minutes (with some reaching 2 hours), which allowed us to gather detailed narratives from a broad range of participants.
Specific recruitment processes differed slightly between the GSPD and GNAD interviews. For the GSPD members, we employed gatekeepers who were also persons with disabilities and members of the organization—and thus known to the participants—to recruit the initial pool of interviewees. The lead GSPD researcher first contacted one of the national GSPD leaders who introduced them to the organization’s local-level leadership. The local leaders then became the gatekeepers and linked the researchers to the participants. They also ensured that the members of the disability movement understood the purpose of the research.
The recruitment process for the GNAD interviews was similar to GSPD, but there were additional challenges. First, the recruiters and RAs had to be fluent in both GSL and English and have the training needed to conduct interviews. Even with trained RAs, however, challenges arose due to low education levels among deaf people in Ghana, as well as unfamiliarity with data collection techniques, because few studies have been conducted in deaf communities in Ghana. To meet these challenges, we recruited two lead RAs with the required communication skills and local connections (one is not deaf but fluent in GSL; the other is deaf and well-connected to GNAD as president of the Youth Wing). The latter was indispensable, because he is an excellent communicator and well-connected with local GNAD leaders, and he had previous experience in the field. Additional RAs (also deaf persons) served as videographers, a requirement for interviews with deaf participants. With strong connections to local GNAD branches, our research team was able to identify and recruit participants fluent in GSL who had experience with GNAD stretching back to the 1960s.
Data collection presented methodological challenges in the Ghanaian context, which are likely unique to the global South generally. First, it was difficult to locate the homes of the participants because of a lack of formal addresses. We therefore relied on the gatekeepers, who either went into the field with the researchers to lead them to the participants or arranged to bring the participants to be interviewed at central locations (for example, at a meeting of the GSPD national congress, where multiple participants could be interview in private spaces).
Second, the DPOs’ record-keeping was poor because of a lack of modern technologies or funding for administrative support. We found some GPSD archival documents, but the majority had been lost because the organization did not have an office in its early days. Some founders had kept organizational papers in their homes, but most had gone missing. Record-keeping was worse among GNAD leaders, who tended not to keep any records because of low formal education levels. Instead, they relied on memory. However, many participants had trouble recalling past events, and communication barriers made it difficult for many participants to understand certain issues, especially the impact of government policies and programs on the lives of deaf people. The interview guide was also a bit lengthy, and the RAs faced challenges translating the questions, framed for English speakers, into sign language. In addition, it was exhausting for the older participants to sign for a long time, which prolonged their sessions or prompted multiple, shorter interviews. This process delayed some of the interviews, but it offered the participants more time to think, consult, and recall events.
Despite these challenges, the interviews generated robust data, which was analyzed in Ghana by the Ghana-based team members, assisted by Ghanaian-based RAs with experience in disability studies. To validate the data, the RAs cross-checked the narratives from the founding members, past administrators, and current leaders who participated in the interviews. We also triangulated data by consulting written records where available (provided by participants), including DPO reports, photos, and identification cards. We analyzed the transcribed data using Braun and Clark’s (2006; 2014) thematic data analysis framework. The researchers familiarized themselves with the data from the point of data collection through to the end of the analysis, extracting meanings during the process. We read through the transcribed data multiple times while coding and identifying patterns. The analysis was done manually, which was time-consuming given the sample of 200 individuals with disabilities. To manage the process, we engaged all the research assistants who had carried out the interviews and were familiar with the data. This meant that each team member only had to review 20 interviews, which made the process manageable within the project’s timeline. When everyone had finished their individual analyses, the team met together to compare findings, affirm similarities, reconcile differences, and finalize themes while mapping out their interrelationships.
A detailed presentation of our data is beyond the scope of this article, but a summary of three significant results will illuminate the benefits of our locally driven methodology: (1) the connections between spirituality/beliefs and stigma, (2) relationships with parents and extended families, and (3) the need for identity and belonging as reasons for joining DPOs
The familiarity of our research team with local socio-cultural contexts prompted us to include interview questions speaking to spiritual beliefs about disability in Ghana, moving beyond the assumption that all precolonial Ghanaian societies accepted persons with disabilities in the spirt of ubuntu. In response, many participants—especially those connected to the GSPD—pointed to the negative impact of spiritual beliefs towards disability. For instance, multiple GSPD members spoke about the idea that children with disabilities were not fully human but rather ‘river’ or ‘forest’ children who had to be sent back to the spirit world. In the words of a GSPD member from southern Ghana,
The community or the family labels the child as nsuo ba (child of the river god) because the child is not a “normal child.” They will therefore go and consult some of the river gods who will confirm that the child is from them or another river. They will therefore ask the parents to buy certain things so that they are able to see the child off with it (Participant, Eastern Region).
A participant from the north offered a similar story. ‘The father and mother,’ they told us,
will find it difficult to let people know that they have a child with a disability. So … they will somehow or somewhat kill it. In our tradition they call it “Nshumu liri pa”. When they say that it means they have accompanied the child home … they will find a way and bring some people, they are specialists in it, and they will do away with (the child) then (Nshumu liri pa) literally means “accompanying it home” (Participant, Northern Region).
Participants also recited proverbs that stigmatised disability, such as ‘Aboa obeye boni no, Nyankopon manni aniwa’ (God will not give eyes to the animal that will do evil), which means that children are born disabled to prevent them from being harmful to society. The belief is that God knows they will be dangerous to society if born without disabilities, so he maims them before birth to render them ‘safe’ afterwards (Participant, Western Region).
The deaf participants also shared stories about stigma, family relationships, and motivations for joining DPOs. In contrast to the participants with physical disabilities, however, only one of the deaf interviewees mentioned traditional beliefs as a source of stigma, saying that ‘Some (people) perceived the disabled as being wicked by nature. By custom, the disabled are not allowed to ascend the throne—this I know as far as the deaf are concerned’ (Participant, Central Region). Instead, the deaf participants connected stigmatization to communication barriers. ‘I remember when I was young,’ said one participant, ‘my mother sent me for something, but I brought a different thing. My mother and all people present that day laughed’ (Participant, Volta Region). ‘Because of the communication barriers,’ said another, ‘they [deaf people] lacked a lot of things’ (Participant, Northern Region). According to a third participant, ‘because the deaf people in Ghana cannot hear, people usually infringe on their rights’ (Participant, Central Region).
On the second theme, our grassroots approach led us to ask questions about relations with family and extended family members, without assuming (for example) that they would have broken down due to the forces of colonialism. In fact, many participants from GSPD found solace in positive relationships with parents and extended family members. Grandparents, uncles and aunties, siblings, and stepparents all played vital roles in the lives of our participants. For example, one participant shared this story:
After my first six months [of learning weaving], an aunty of mine who was a mid-wife at Asamankese was informed that I was learning a vocation. This woman really loved me, and so one day, she paid me a surprise visit at work and spoke with my master. She asked to know how much I was supposed to pay when I started the training, and so after she was told the figure, she paid for it (Participant, Eastern Region).
These positive attitudes and support were instrumental in helping the respondents to become active agents in their own lives.
For deaf Ghanaians, communication barriers tended to make relationships with family members more difficult. For example, one participant remarked that
The challenges of the deaf are a lot. The first challenge is with their parents or guardians. It is very difficult for the deaf and their parents to understand each other, and so deaf people cannot learn from their hearing parents. This is a big challenge for the deaf (Participant, Central Region).
Another observed parents who ‘hate and reject their (deaf) children,’ including refusing to bring them home from school during vacations (Participant, Central Region). Compared to the participants with physical disabilities, communication barriers faced by our deaf respondents resulted in less support from family members.
Finally, the direct experience of our Ghana-based team with the disability rights movement meant that we realized the importance of asking about motivations for joining their respective organizations. Interestingly, for the GSPD activists, the desire for group bonding and belonging was a key motivating factor. Speaking of the organization, one participant said,
… when I see my colleagues like this, I become very happy and I know that oh, I am not alone so when I join this group, I was happier. And even if I was doing something and I call them and I see them I am very happy … (Participant, Greater Accra Region).
For another participant, the GSPD afforded an opportunity to end their isolation:
… if we didn’t go, we wouldn’t get friends because we go out together all dressed up. We discuss our future we make plans and yes, we socialise … if we don’t come out but stay home alone no good will come for us in the future. So that motivated us to come out so in the future we could help each other from hiding ourselves.
This finding is significant because during that time there was so much stigma towards disability that GSPD members could not associate with persons without disabilities or their associations and institutions. The GSPD therefore served an important vehicle for social bonding.
The GNAD leaders expressed an even stronger need for identity and belonging. Developing and enhancing deaf culture among the members of GNAD, bound together by common experiences and GSL, was important to our respondents in the quest to form a distinct identity for deaf people in Ghana. This project reflects deaf Ghanaians’ motivation to come together to share their experiences and to protect their rights. The feeling of being different from hearing people, due to language barriers, difficulty interacting with others, social isolation, and neglect, motivates deaf Ghanaians to come together to develop their identity based on sign language. For these reasons, deaf Ghanaians see themselves as a distinct ethnic minority group.
As such, GNAD was founded not only as a vehicle for rights, but also—and perhaps primarily—to promote deaf people’s language, identity, and culture. In the words of one participant,
[GNAD] was established because the deaf were not together. They were scattered around the country, so they wanted to be meeting and communicating among themselves. The government also wasn’t recognizing them, so they wanted to come together so that they will be recognized and fight for their rights (Participant, Greater Accra).
Similarly, another participant told us that ‘I was always happy to meet other deaf people. I felt lonely and needed deaf peers. I wanted all of us to unite and fight for our rights’ (Participant, Central Region). Coming together in this way provided a sense of strength and unity and a platform for advocacy ‘to advertise that the deaf can do something in life’ (Participant, Greater Accra Region). ‘We established the association,’ said a participant from Ashanti in southern Ghana, ‘for the sake of unity, love, and training, so that deaf people can live a better life.’ According to another participant, GNAD was formed because ‘…they [the founding fathers] wanted deaf people to be united and have one culture’ (Participant, Eastern Region), a sentiment echoed by another GNAD leader who said that ‘… we help a lot of deaf people to attend so that they can celebrate their deafness’ (Participant, Volta Region).
This paper has presented insights from a North-South collaborative project on the oral history of disability rights in Ghana, highlighting the need for culturally sensitive and locally appropriate research methodologies. Our project design and analysis were guided by disability scholars who caution against importing Northern methodologies into Southern contexts without adapting them to local cultural contexts. In Africa, there has been a turn towards ubuntu as a framework for this reorientation of research methodology. Originating in South Africa, ubuntu has become a shorthand term signifying traditional African community, driven by the assumption that African societies privilege the group over the individual. The common definition of ubuntu, ‘a person is a person through other persons’ (Shutte 1993: 46), illustrates this assumption clearly. On the surface, this approach appears to offer a valuable cultural adaptation of Northern methodologies to fieldwork in Africa. However, our experience shows that it can mislead researchers by leading them towards a priori assumptions about African societies that might cause problems for research design and fieldwork methods. First, the ubuntu perspective often assumes that all precolonial Africa societies traditionally accepted persons with disabilities as full members of their communities. This assumption can lead researchers to focus on why the supposedly natural state of a society has ceased to function rather than to investigate the actual socio-economic roots of social exclusion. Second, in focusing on ‘customary’ social relations, ubuntu tends to view African societies as naturally communal and led by traditional authorities who function naturally as altruistic community trustees (Berghs 2017a; Goodley and Swartz 2016).
Our experience in Ghana supports the argument for grassroots, locally driven approaches to field research in the global South (e.g., Bannink Mbazzi et al. 2020), but we also believe that the turn towards ubuntu—and assumptions about African community generally—might not necessarily lead to the best adaptations of Northern methodologies. For example, ubuntu might lead researchers to employ chiefs in obtaining informed consent from participants in their communities. However, this supposedly grassroots approach can lead to involuntary, forced consent (Strang and Mixer 2015; Woodsong and Abdool Karim 2005). But even if researchers could work ethically through traditional authorities, chiefs in urban areas—although they might exist—often do not function in the same way as in rural communities. This was true for our participants, most of whom lived and worked in towns and cities, where chiefs are not present in the daily lives of community members. Furthermore, the assumption that ubuntu-based African societies naturally accept persons with disabilities as part of diverse communities might have blocked us from asking questions about the longer history of marginalization and exploitation. Our interviews revealed that, although worsened by colonialism and socio-economic change, stigma towards persons with disabilities is also deeply embedded in some precolonial Ghanaian societies (Avoke 2010; Naami 2019a, 2019b; Slikker 2009). As such, the ubuntu model was problematic methodologically.
More important for our research design than ubuntu-driven assumptions were socioeconomic factors, such as low literacy and poverty, which made it necessary to adapt ethics and recruitment strategies. One of the biggest challenges was building trust among our participants. As Wax (1971) argues, active trust-building is needed, especially when recruiting vulnerable populations, to make them comfortable enough to open up about their daily struggles and how they manage their lives. Although trust building is required in studies in the global North as well as the global South, our combined experience in North America and Ghana has taught us that it can be more difficult to obtain trust in the latter, where there tends to be more mistrust of researchers by local communities. Research teams therefore should be alert to being more creative to gain the voluntary consent of participants and to ensure the information they gather is credible. On this issue, the ubuntu model might have helped us in some ways, such as building trust through chiefs and elders or through community members at large. As discussed above, we did not have to follow this route. In any case, however, for our participants (especially older informants), traditional authorities and community members had been sources of their marginalization. The ubuntu perspective provided little guidance in this situation, other than to direct attention to external sources of the breakdown of community.
This is not to say that community was unimportant in building trust. In fact, it was central, but not necessarily in the sense of ubuntu. Instead, trust-building was possible because of the shared community of disability rather than generalized ‘African community.’ The disabled community in Ghana is small, and almost everyone knows everyone else. This is particularly so for the deaf community, which is close-knit because its members are brought together by the residential school system (there is only one senior high school, which the majority of GSL users, who are our participants, attended), deaf churches, and other social activities (Mprah 2011). In the case of the GSPD interviews, adjusting Western methodologies to focus on trust brought the added benefit of fostering empowerment among the GSPD members in several ways. First, using gatekeepers known to the disability communities to help with recruitment and interviewing provided a vehicle for empowerment by bringing together individuals with similar disabilities to discuss their lived experiences. Second, the interviews themselves were empowering. The participants narrated their stories with passion and a sense of duty to inspire young and upcoming disability activists and asked us to reveal their names to the younger generations.
The trust created by employing researchers with personal connections to the participants allowed for amiable and successful interviews. In the case of the GSPD interviews, the inclusion of disabled GSPD staff as gatekeepers/recruiters set the tone for a collegial process—sometimes against the backdrop of social gatherings—that generated many insights into the history of the organization. In the case of the GNAD interviews, including a deaf researcher was essential to building the rapport necessary to elicit deep and candid responses. Despite significant challenges, such as the length of the questionnaire and the physical stamina required to maintain long conversations in GSL, the interviews produced a wealth of unique information about the history of GNAD. Ultimately, the adaptations we made in the field in response to local cultural and social contexts produced a treasure trove of insights into the history and lived experience of disability rights in Ghana.
Having gained the trust of the interviewees, and working within local cultural contexts, the Ghanaian team members were able to gather much valuable and insightful information. The data was rich in conveying uniquely Ghanaian experiences with disability, including cultural contexts, issues of social inclusion/exclusion, and the historical experience of disability rights activism. The interviews also revealed that persons with disabilities in Ghana have been active and successful agents of their own destinies. Indeed, most participants spoke passionately about advocacy and education. They were not, however, one homogenous group. Although we found important common experiences among deaf Ghanaians and those with physical disabilities, there were significant differences in their lived experiences and perceptions of disability. Most importantly, deaf Ghanaians prioritized identity and culture much more strongly than Ghanaians with physical disabilities. This difference is not unique to Ghana or the global South, and it might be a conventional finding for most academic researchers. However, it is important to emphasize in the Ghanaian context, especially for the Ghanaian public and stakeholders, because disability issues are new in Ghana and persons with disabilities are often treated as a homogenous entity in policies and programmes.
One possible limitation of our methodology arises from the issue of the insider-outsider status of our fieldwork teams, whose membership in the disability community offered both opportunities and challenges (Ladd 2003; Mprah 2013). On the one hand, insider status helped our researchers to enter communities and to gain the trust of the participants. However, being an insider also produces tensions associated with conducting research in one’s own community (Patton 2002) and it ‘does not guarantee the authenticity of what is discovered’ (Savvides et al. 2014). This can include preconceptions that the researcher might bring to the field, such as assumptions about social relations or lived experiences among participants. These preconceptions can lead to ‘a near obsession with seeking an unseen “reality” in virtually every corner’ that can lead to accusations of not knowing and/or of interpreting incorrectly what they ought to know’ (Labaree 2002: 102). On the other hand, participants might hold information back, assuming that it is common knowledge to insiders, or worry about sharing inaccurate information. Finally, perceived differences in status between researchers and participants can increase tensions when both are insiders (Labaree 2002; Mullings 1999).
This paper has provided empirically based insights into the methodological challenges of a collaborative North-South project on the oral history of disability rights in Ghana. Our experience confirms the importance of adapting international methodologies to local contexts, despite the dilemmas arising from the need to satisfy the expectations of Northern funders and institutions. At the same time, we recognize the dangers of essentializing African community through models such as ubuntu. Instead, our experience illustrates the importance of collaboration with researchers based in the global South, who are familiar with actual circumstances on the ground, and a willingness to be flexible and to adapt methodologies according to circumstances in the field. We adapted our approaches to ethics, recruitment, and data collection in different ways for the deaf and physically disabled participants to consider the socio-cultural needs of the respondents. Among our adaptations, trust-building within local Ghanaian cultural contexts was especially important. We built trust by utilising RAs connected to the GSPD and GNAD, who were known to the potential participants, which incorporated a personalized web of connections among community members into recruitment and data collection. This grassroots approach facilitated the collection of robust data based on the lived experiences of persons with disabilities in Ghana.
In conclusion, our experience shows that collaborations between researchers in the global North and South can privilege local contexts while contributing valuable data capable of advancing debates and theory at the international level. Based on our grassroots fieldwork, we argue that solely utilising Northern approaches to undertaking research could undermine outcomes for the issues being explored. We, therefore, posit the importance of embracing both North and South methodologies to ensure that studies are efficacious and respectful of cultural differences. We specifically recommend that a) REBs in the global North familiarise themselves with cultural expectations and demands connected to cross-cultural projects and b) REB members and researchers embrace cultural sensitivity in assessing research ethics requests for studies based in the global South.
We would like to acknowledge our participants for their candid and insightful reflections and two anonymous reviewers whose criticisms and suggestions were deeply appreciated.
This work was supported by the Social Sciences and Humanities Research Council (SSHRC) of Canada.
The authors have no competing interests to declare.
Jeff Grischow managed the project, including research planning, methodology, the design of the research instruments, and the fieldwork. He assembled, wrote and edited the first draft of the manuscript, and oversaw the revisions during the review process. Augustina Naami contributed to the design of the methodology and the acquisition, analysis and interpretation of the data. She wrote the sections on physically disabled Ghanaians and assisted with the formulation and editing of the draft manuscript before and during the review process. Wisdom Mprah helped to design the research instruments and supervised data collection in the field. He wrote the section on deaf people, edited the final manuscript, and contributed to addressing comments from reviewers. Magnus Mfoafo M’Carthy assisted with designing the research instruments and methodology, contributed to the ethics review process and helped to manage the fieldwork. He drafted the section on methodology and edited the manuscript before and during the review process.
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