Chapter to appear in Farrell, A. (Ed.)Exploring ethical research with children.Berkshire, UK: Open University Press/ McGraw Hill Education.
‘Nothing about us without us’: Restorative research partnerships involving Indigenous children and communities in Canada
Jessica Ball
University of Victoria
Canada
Introduction.
Canada’s first peoples hold children’s well-being as the key to their social and economic development.For scholars committed to research and practice that supports optimal child development, there are potentially rewarding opportunities to become involved in projects with Indigenous people in Canada.[1] Research is needed to increase understandings of what Indigenous people want for their children and how they can achieve these goals within the broader context of Indigenous family development, cultural revitalization, and capacity building (Mussell, Cardiff, & White, 2004). However, Indigenous scholars and political leadersinCanada, as in many countries, insist that relationships between researchers (whether they are Indigenous or not) and Indigenous people must be part of a larger process of decolonization and restorative social justice (Government of Canada, Royal Commission on Aboriginal Peoples, 1996).Researchers interested in engaging with Indigenous individuals, communities, and organizations are being challenged to rethink the ethics that guide their practice and to establish partnerships with Indigenous groups in order to negotiate the values, conceptual frameworks, methodologies, ownership issues, and approaches to disseminating results that will be part of a research agenda (Interagency Advisory Panel of Research Ethics, 2003). “Nothing about us without us” expresses the principle of participation around which considerations of ethics in research involving Indigenous peoples in Canada now pivot.
Indeed, the ethics of research involving Indigenous people is one of the most hotly debated and potentially daunting issues in research in Canada. Although the number of Indigenous researchers is growing, most research about Indigenous people continues to be done by non-Indigenous investigators and students. Many researchers are poorly informed about the socio-historical conditions that nearly devastated Indigenous people in Canada and government policies that continue to oppress them. Researchers are ill-prepared to negotiate research agreements with Indigenous people, to follow cultural protocols and to respondknowledgeably and usefully to Indigenous peoples’ concerns regarding research. Fortunately, more researchers are becoming aware that there are special issues surrounding research with Indigenous people, especially regarding their children. Many are seeking new understandings and have joined national as well as local forums on-line, at conferences, universities, and gatherings involving Indigenous people.
Increasingly, Indigenous communities and organizations are articulating informal or formal, written ‘Codes of Conduct’ or ‘Ethical Guidelines’ for research. This step is part of a groundswell of activity led primarily by Indigenous scholars to advance new ethics for the conduct of research involving Indigenous people (Castellano, 2004; Piquemal, 2000).For example, the National Aboriginal Health Organization, representing First Nations, Metis, and Inuit people in Canada, is promoting four criteria for research involving Indigenous people: ownership, control, access, and possession at the level of the participating community (Schnarch, 2004). The British Columbia Aboriginal Capacity and Research Development Environment programs established in many provinces in Canada has proposed that four ‘r’s - respect, relevance, reciprocity, and responsibility – provide a principled framework for developing academic initiatives with Aboriginal people (B.C. ACADRE, 2004). At the University of Victoria, the graduate program on Indigenous Governance has encapsulated recurring themes in the evolving discourse on Indigenous research ethics into three guiding principles for research: protection, participation, and partnership (University of Victoria, 2004). All of these principles raise new ethical concerns, for example, how to protect confidentiality when data is retained by a community. They also raise practical concerns, for example, the time added to project schedules in order to build relationships and negotiate community-level agreements, and the uncertainty about whether the researcher can count on being able to disseminate results after a project is completed.
Responding to mounting uncertainties and debate, one of the three large federal agencies that fund Canadian research, the Social Sciences and Humanities Research Council of Canada, facilitated an intensive online discussion throughout 2003 focused on Indigenous research ethics (Interagency Advisory Panel on Research Ethics, 2003). This forum created an opportunity for Indigenous and non-Indigenous scholars, community leaders, and representatives of research organizations such as university-based research ethics board members to come (virtually) to one table to discuss various approaches and to formulate new understandings (Long LaFrance, forthcoming). The forum saw thousands of thought-provoking messages -posing problems, potential solutions and position statements - from scholars in universities, colleges, and community agencies from coast to coast. The forum confirmed a common will to exchange views, share case examples illustrating ethical choices, and remediate oppressive practices by researchers. There was general agreement on the superordinate goal, in research and training, of supporting self-determination and control on the parts of Indigenous people. The fact that no unified statement or consensus on a specific set of guidelines has yet emerged can be seen as positive, given the current need to stimulate broad local, national, and international debate and to bring more Indigenous groups and perspectives into the discussion. This chapter offers some key learning points that I have derived to date from ongoing discussions among scholars as well as my own decade of experience in researchand training partnershipswith Indigenous communities in Canada. The key ethical principle unifying all the points is inclusion, as an integral part of a post-colonial, restorative social justice agenda.
● Learning point:Non-Indigenous researchers need to acknowledge that being members of the dominant culture and being researchers – typically with funding and university positions - they are in positions of power. The potential to oppress and exploit Indigenous people must be a matter of concern and deliberate efforts should be made to level the playing field in negotiating research relationships.
Never again: Historical conditions motivating contemporary ethics.
Indigenous people have withstood the near destruction of their populations, social structures, and cultures as a result of colonial interventions. The most catastrophic impacts have occurred through direct physical assaults on Indigenous populations and their ways of life, including germ warfare, raids on Indigenous settlements resulting in the death, capture and confinement of native children and adults, exposure to infectious diseases,and over-hunting by traders resulting in widespread starvation. Further depletion of the Indigenous population, their capacity, and their resources was effected by the imposition of a land reservation system, which created a system of apartheid restricting the movement of Indigenous people on and off reserves. Their participation in the labour force, education, social programs, politics and Canadian society as a whole was thereby limited.
For the Indigenous population that survived, a final solution was sought through a Canadian government sponsored program to apprehend and forciblyconfine native children in Indian Residential Schools (Assembly of First Nations, 1994).By 1930, these institutions housed approximately 75% of all First Nations children between 7 and 15 years of age. Theywere intended to Christianize and ‘civilize’ the Indigenouspopulation by breaking the bonds between children and their parents, instilling shame about their cultural heritage, and indoctrinating children into Anglo-Canadian values, language, religion, and ways of life (Barman, 1996). During the 1960’s, as the failure of Residential Schools to break the ties between children and their families and to eradicate Indigenous cultures began to be acknowledged, governments in several provinces devised a new approach to interdicting the transmission of cultural knowledge and identity from parents to children. Commonly referred to as the ‘Sixties Scoop’, social workers in the dominant culturewere encouraged to apprehend Indigenous children and quickly arrange for their legal adoption into white families(Fournier & Crey, 1997). During the 1960’s, in the province of British Columbia, over 64% of all children in the care of the government were Indigenous. As one Elder put it: “They came, they saw, and they took everything we had of value, including our greatest treasure – our children.” Today, over 40% of all children in government care in British Columbia are Indigenous.
●Learning point: Researchers who wish to address issues pertaining to Indigenous children need to become familiar with the socio-political history of relationships between Indigenous and non-Indigenous people. The memory and contemporary sequelae of those destructive relationships continue to influence interactions between Indigenous and non-Indigenous people. Knowledge of underlying concerns and issues can inform efforts to create trust. Research must demonstrate new forms of interaction that help to reinstate Indigenous self-determination, restore power to Indigenous people in their dealings with authorities, and recognize the rights of Indigenous people to make decisions regarding their children’s involvement in research and the flow of information from them to researchers.
Protection.
Understandably, as a result of efforts by colonial authorities to destroy Indigenous people and cultures, and to separate children from their parents, the vast majority ofIndigenousindividuals and community groups today are highly suspicious of outsiders’involvement in their communities, and especially with their children (Cole, 2002).
●Learning point: Researchers wishing to engage with Indigenous people need to assume responsibility for ensuring that the rights of children and their parents or other guardians are protected.Protection goes beyond merely obtaining informed consent from individuals.In general, research procedures should not require isolation of children from their caregivers. Parents should be fully informed of what will be done with their children and special steps should be taken to explain their right of refusal. Results of their children’s participation should be offered in terms that are understandable and helpful.
● Learning point: Researchers need to absorb the idea that relationships of trust are the foundation for ethical research practice, and these relationships require unprecedented amounts of time, self disclosure, and care before discussions about research can proceed.
There is tremendous diversity among Indigenous people and groups, including the degree to which they suffered at the hands of colonial authorities and the degree to which they have assimilated into mainstream Canadian society. Correspondingly, there are degrees of receptivity to becoming involved in research. At one end of the spectrum, some Indigenous people remain poorly informed about the research process and continue to be naive participants in research that may reproduce colonial patterns of objectification and dispossession of their Indigenous knowledge. Some are actively resistant and will only participate in projects initiated, governed, and conducted by Indigenous people or organizations. Some are open – and some actively seek – to become involved in certain kinds of investigations focusing on children and families.
● Learning point: There is no ‘one size fits all’ in ethical practice involving Indigenous people in research. Research agendas must be flexible, leaving space for the community to identify their concerns and express their needs with regards to protection of the rights of children and families and promotion of that particular community’s well--being.
Partnerships.
Research is not only about the generation and application of knowledge. Research is also a form of social engagement, and it has political significance. Some steps to successfully negotiate ethical research with Indigenous people include: self-explanation; respect for cultural protocols, invitation, trust, and inclusion through partnerships. These are discussed subsequently.
The present time is referred to by many as the beginning of a time of healing for Indigenous people (Long & Fox, 1996). It must also be a time of self-confrontation for non-Indigenous people. Researchers have conventionally tended to distance themselves from ‘that which is to be discovered.’ They have positioned themselves as experts and focused attention unilaterally towards the ‘subjects’ to be understood. Among Indigenous people in Canada, this unidirectional gaze is no longer tolerated; rather, researchers who hope to engage with Indigenous people need to be able to account for themselves, for example, by providing details of their ancestry, their family life, their scholarship, and their intentions, not only during initial introductions, but throughout a project.
●Learning point: Self-explanation is a first step in relationship-building to enable research. Both parties must define who they are, the scope and nature of their authority over knowledge sources and methodologies, their purposes, plans, and expectations in relation to the project.
●Learning point:An invitation or request by an Indigenous group provides a good context for exploring a research engagement. Alternatively the researcher needs to seek a process of introductions and consultations with appropriate Indigenous individuals, communities, or organizations.
● Learning point: Cultural literacy is prerequisite to establishing a partnership with an Indigenous organization or community. Researchers need to observe cultural protocols when approaching an Indigenous organization or community to explore their interest in a research project. Indigenous scholars and community-based agencies are often able to facilitate connections between prospective researchers and groups of interest.
●Learning point: The development of real relationships based on trust is integral to successful partnership. As many of us in the field of child care and development understand: It’s all about relationships.
Regaining and retaining control.
In an effort to redress the complete lack of control over their children, social life, means of sustenance, traditional territories, and participation in the broader society, Indigenous communities are vigorously asserting their rights to self-determination, especially in matters concerning their children, their land resources, and their culture(Government of Canada, 1996). Within this agenda, Indigenous people are asserting their right to control as much as possible the involvement of non-Indigenous people in their lives. Increasingly, communities that are receptive to research are prepared to articulate the conditions of their involvement in research (e.g., Akwesasne Research Advisory Committee, 2004; Arctic Institute of North America, 2004; Aurora Research Institute, 2002; Graham & McDonald, 1998; Mi’kmaq Research Principles and Protocols, 2004). Often, they seek a negotiated agreement with the lead investigator or research team regarding the purpose and plans for a proposed project. Most are now asking to be active partners with significant roles in all phases of a research project.
●Learning point: Where Indigenous people are major participants in research or they have a major interest in the outcome of a research project, such as knowledge about the health and development of Indigenous children, then working relationships based on collaboration and partnership should be established between the researcher and these participants or their representatives.
To illustrate, a partner in a number of my community-university research and training projects over the past several years has been Lil’wat Nation, a rural community of 1600 Interior Salish, St’at’imc people on Canada’s west coast. The Senior Administrator there, Sheldon Tetreault, has facilitated discussions with Band Councillors who govern this First Nation, leading tocontractualmemorandums of agreements specifying the elements and conduct of each research project.Tetreault commented (and signed a consent form agreeing to be quoted) as follows:
“We are working hard in Lil’wat Nation to develop our human resources and to create strong programs for children, and I think that having the interest from the university in what we’re doing here is very positive. It holds a mirror up for everyone to see what we’re doing, and it amplifies the excitement. We want to retain the staff we have helped to develop and keep qualified people working in our community, and so for them to hear from researchers that other people are interested in what is gong on here, and that we are doing things here that can be useful for others to learn from , that’s good. It makes a few people here who might have thought about looking for work in a bigger centre or in the city realize that this is a really good place towork. And especially in the way that the research is being done – developing long-term relationships, making sure everyone knows what they are agreeing to, and ensuring benefit to the community itself, and not just beyond the community – there is a mutuality and respect that I think is exemplary.”
●Learning point: Negotiated agreements to partner in research involves Indigenous representatives in most activities undertaken by researchers, including: adjudicating the purpose and plans for an investigation; the conduct of the research; accountability of all members of an investigative team; the nature of data to be obtained from specific sources and the nature of data and data sources that must specifically be excluded; jurisdiction over data regarding ownership, possession, storage, and access; and primary decision-making over research outputs including dissemination of knowledge yielded by a study.
Indigenous control of research topics.
Researchers are knowledge brokers. Researchers have the power to collect information and produce meanings which can support or undermine values, practices, and people, and to construct legitimating arguments for or against ideas, theories, policies, or practices. To date, Indigenous populations have been exhaustively studied and their faith in realizing positive returns has all but expired. A frequent comment in communities is:“Research is a four letter word around here.”
At a recent conference of the National Aboriginal Health Organization, a First Nations colleague summed up a point made by many participants:” We are tired of researchers coming in and documenting all the things wrong with our communities: youth suicide, child neglect, alcohol abuse, family violence, poor nutrition, embezzlement. You would think people would want to figure out how we survived white people for so many hundreds of years. How we kept our children alive, kept our stories, kept our knowledge about how to live on the land, kept our ceremonies, kept our fires burning with hope for generations yet to come. How about some research on what’s right with us? About what makes us resilient.”