Beyond Reconciliation

The Changing Nature of Aboriginal and Torres Strait Islander Health Research

Bronwyn Fredericks

Guest Public Lecture Series

Oodgeroo Unit, Queensland University of Technology

Kelvin Grove Campus, Queensland, Australia

26 October 2007

Introduction

There has been a long history of health research conducted on Aboriginal and Torres Strait Islander peoples. Linda Tuhiwai Smith (1999:3) makes the statement that she has heard “we [Indigenous peoples] are the most researched people in the world”. It is these experiences that provide Aboriginal and Torres Strait Islander people with a wealth of experience and knowledge about research and informs the ways research takes place within communities and with institutions and universities. This paper will focus on my reflections on the changing nature of Aboriginal and Torres Strait Islander research. In sharing my reflections I will offer glimpses of research undertaken in the past, examples of current happenings and outline some of the current health research stands in direct opposition to the research of the past. I will conclude with suggestions of what I think we can expect to see in the future.

Research undertaken in the Past

There has been a long history of research conducted on Aboriginal and Torres Strait Islander peoples. It is often said that Australia’s Indigenous peoples are the most researched people in the world or referred to as “the most researched group in the world”. Maori writer Linda Tuhiwai Smith (1999:3) makes the statement that she has heard that “we meaning Indigenous people) are the most researched people in the world” from several different Indigenous communities. Historically, the vast majority of this research has been carried out by non-Indigenous peoples. In the past the research experience as the most researched has been “exploitative with little of value being accrued by Aboriginal people or their communities” (Aboriginal Research Institute, 1993: 2). Some of this research has been invasive into Aboriginal people’s lives and communities. Stephanie Gilbert, an Aboriginal researcher and social worker, argues (1995:1) that,

In the name of western science Aboriginal and Torres Strait Islander people we have been researched, poked and prodded. Our anatomy, teeth, skulls have been stolen and studied. The same western science that believed we would die out given the superiority of civilised cultures such as Anglo- Saxons. The study of Indigenous people didn’t stop at our anatomy. Our cultures, manners, beliefs and practices have been mocked, denied and forbidden (1995:1).

Over the years some research has been undertaken without permission and without regard to Aboriginal peoples’ rights to participate or not to participate.

Some communities have not been aware that non-Indigenous people have undertaken research while within their communities. Cruse puts it simply when she states “Many researchers have ridden roughshod over our communities, cultures, practices and beliefs, and we are now in a position to prevent this from continuing” (Cruse, 2001:27). Questions have been raised for many years by Aboriginal peoples, about research, which has been and continues to be undertaken in their communities. Aboriginal peoples have been weighed, have given blood, urine, faeces and hair samples, have given their stories, explained their existence, been interviewed, questioned, observed, followed, interpreted, analysed and written about for years. From the data reports were generated, books generated and theses generated. Roberts cites Aboriginal activist Kevin Gilbert in his summation of research that,

... Aboriginals have had the pants studied off them. There are unending, limitless sums of money wasted on bloody research and what the hell has it all led to apart from a recurring harvest of MAs, PhDs etc? Even the odd bit of action that does come out of it has to masquerade under the cloak of respectability of ‘research’... (1994:36).

Internationally Indigenous peoples have additionally made statements about research within their own communities and in other Indigenous communities. Smith (1999:1) states that, “The word itself, ‘research’, is probably one of the dirtiest words in the indigenous world’s vocabulary”. Smith continues that,

It appalls us that the West can desire, extract and claim ownership of our ways of knowing, our imagery, the things we create and produce, and then simultaneously reject the people who created and developed those ideas and seek to deny further opportunities to be creators of their own culture and own nations (1999:1).

Smith draws out the historical impacts of imperialism on Indigenous peoples being denied our claim to our own existence, our right to self-determination and our own cultural knowledges. Henderson (2000), Kenny (2000), Monture-Angus (1995) and Wheaton (2000) provide similar examples of exploitation from Indigenous peoples from the territories now covered by the countries known as United States of America and Canada.

Changes Begin to Happen

Australian Aboriginal peoples began in the 1970s to voice more strongly that concern as to what was happening and what still continues to happen in some instances. In more recent times, issues have been articulated regarding some of the inappropriate and offensive methodological instruments that have been used and reports presented in ways that were not useable by the communities they were written about. It is worth remembering, states Rigney that,

… the production, re-production and dissemination of academically generated ideas via traditional research has marginalised and misrepresented Indigenous ways of understanding and knowing by extracting and appropriating Indigenous cultural, spiritual, oral and intellectual testimony (1999:2).

In particular higher education institutions in Australia have become sites where others have assumed ownership of our knowledges, ways of being and doing; other sites where this has occurred are museums, libraries and art galleries.

In the late 1980s and the 1990s several publications and statements included issues regarding research with and within Aboriginal communities. One of the more important statements was contained in The Royal Commission into Deaths in Custody Report (RCIADIC, 1991) in the form of recommendation number 330. It recommended that:

Research into patterns, causes and consequences of Aboriginal [problems] should not be conducted for its own sake. Such research is only justified if it is accepted by Aboriginal people as necessary and as being implemented appropriately. Action research of the type that produces solutions to problems is likely to be seen by Aboriginal people as being most appropriate (1991, Recommendation no.330)
It also recommended that,

Where research is commissioned or funded, a condition of the research being undertaken should be the active involvement of Aboriginal people in the area which is the subject of the research, the communication of research findings across a wide cross-section of the Aboriginal community in an easily understandable form, and the formulation of proposals for further action by the Aboriginal community and local Aboriginal organisations (1991, Recommendation no.320).

Several publications on ethics in Aboriginal and Torres Strait Islander research followed soon after. Guidelines on Ethical Matters in Aboriginal and Torres Strait Islander Research was approved in draft form by the 111th Session of the National Health and Medical Research Council (NHMRC) in Brisbane in 1991. This document needed to be utilised in conjunction with the National Statement on Ethical Conduct in Research Involving Humans (NHMRC, 1999). The Aboriginal and Torres Strait Islander Commission (ATSIC) issued its own guidelines on Aboriginal and Torres Strait Islander Research in 1994. ATSIC’s guidelines however, were primarily aimed at non-Indigenous researchers and consultants and not at Aboriginal and/or Torres Strait Islander peoples undertaking research in formal degree programs within higher education institutions, nor Aboriginal and /or Torres Strait Islander peoples who may be undertaking research as part of a consultancy project. Some Aboriginal and Torres Strait Islander tertiary education centres, research collectives and research units additionally produced documents pertaining to preferred research styles and ethics statements. The Australian Institute of Aboriginal and Torres Strait Islander Studies (AIATSIS) produced its Research Guidelines in 2000.

In 2003 the NHMRC produced Values and Ethics: Guidelines for Ethical Conduct in Aboriginal and Torres Strait Islander Health Research. It replaced Guidelines on Ethical Matters in Aboriginal and Torres Strait Islander Health Research (1991). Much changed between 1991 and 2003 including a greater number of Aboriginal and Torres Strait Islander people becoming involved in research as researchers. In 2002 the NHMRC issued the document mostly commonly referred to as the Road Map, The NHMRC Road Map: A Strategic Framework for improving Aboriginal and Torres Strait Islander Health Through Research (2002). This document sets out criteria for health and medical research with and of Aboriginal and Torres Strait Islander Australians which all research proposals and funding applications must address.

These include:

• that research be based on identified need;
• be action oriented;
• contain a skills and knowledge transfer strategy;
• provide proper acknowledgement of and ownership to Aboriginal and Torres Strait Islander peoples;
• include consultation;
• Aboriginal and Torres Strait Islander ways of working; and
• community control of research.

These are the key criteria that currently set the agenda for Indigenous health research. These criteria, if enacted, have the capacity to contribute to the self-determination and liberation struggles as defined and controlled by Aboriginal and Torres Strait Islander peoples. Examples of where this type of research is taking place which embraces these principles includes research undertaken within the Centre for Clinical Research Excellence (CCRE) at the Queensland Aboriginal and Islander Health Council (QAIHC); the South Australia Centre for Clinical Research Excellence (CCRE); the Onemda Centre at the University of Melbourne; the Indigenous Health Unit based within the James Cook University; and the Cooperative Research Centre of Aboriginal Health (CRCAH). These university and community-based research models all draw upon the Principles outlined in the NHMRC RoadMap.

I wish to draw particular attention to the Queensland Aboriginal and Islander Health Council (QAIHC). It leads and governs the Centre for Clinical Research Excellence (CCRE), which has been funded by the National Health and Medical Research Council (NH&MRC). QAIHC is the State peak body for Aboriginal and Torres Strait Islander Community Controlled Health Services in Queensland and is the State Affiliate of the National Aboriginal Community Controlled Health Organisation (NACCHO). QAIHC was established in 1990. Since establishment, the number of Aboriginal and Torres Strait Islander Community Controlled Health Services (AICCHS) in Queensland and has grown significantly to 26 (2007). QAIHC also has significant partnership arrangements with other health related community controlled sectors in Queensland through the child protection and alcohol and other drug organisations.

The CCRE research program focuses on the prevention and management of circulatory and associated diseases, such as heart and kidney disease, in Aboriginal and Torres Strait Islander peoples living in urban areas. Circulatory and related conditions are one of the major causes of excess morbidity and mortality in Aboriginal and Torres Strait Islander people in Australia. The CCRE is a partnership between QAIHC and Monash University, the Queensland University of Technology (QUT), the University of Queensland (UQ), James Cook University (JCU), the National Heart Foundation (NHF), and the University of Wollongong (U of W). The establishment of the CCRE under the Community Controlled model of governance is unique and presents both opportunities and challenges for innovative partnerships between universities and Aboriginal and Torres Strait Islander community organisations. The governance and operational structure of the CCRE is underpinned by the operating values and principles of self-determination and community control. The principle of community control requires that ownership and governance of the CCRE is vested in Aboriginal and Torres Strait Islander people as reflected by the management and research strategies.

The Future

It is growing increasingly unacceptable for research to be done on Aboriginal and Torres Strait Islander peoples as it once was. There are now increasing numbers of Indigenous researchers. The term ‘Indigenous researcher’ brings about a range of labels. It could be assumed that the researchers will work with Indigenous people as the objects of research and that the researchers are Indigenous. Both of these assumptions would be correct. However, there are other aspects that also need to be considered. It could be considered that Indigenous researchers are both subject and object. What additionally needs to be considered is that many Indigenous people who undertake formal academic studies or who have worked within mainstream services previously have been taught how to teach and research using western frameworks and disciplinary methodologies that at times can further colonise and apply imperial measures on Indigenous knowledges. We need to consider how we use what we have learnt, how we act, and how we use the knowledge we have gained. We also need to be careful that we are not roped into projects that involve Aboriginal and Torres Strait Islander people as participants and thinking we are doing the right thing and then becoming vehicles of on-going colonisation and participate in the untruths and the ways in which we are marginalised and misrepresented / represented.

The future therefore is about Indigenous researchers who can construct, rediscover and/or re-affirm Indigenous knowledges and being able to operate within the traditions of classical epistemological methods of physical and/or the social human sciences. This is not to say that we need to embrace or fit within the classical epistemological methods of these sciences. We need to know how these sciences are constructed. We need to know how they are used and how they impact upon us, as Indigenous peoples. If we do not, we serve to assist in further colonisation and maintaining our positioning.

We need to need to think about the concepts such as decolonisation, re-positioning and supporting Indigenous knowledges and Indigenous peoples. Rigney (1997: 2) suggests the concept of an Indigenist methodology, as a, “step toward assisting Indigenous theorists and practitioners to determine what might be an appropriate response to de-legitimise racist oppression in research and shift to a more empowering and self-determining outcome” (1997: 2). Rigney’s work builds on the scholarship from the work of a number of African-American researchers (for example Asante, 1987; 1988; 1990) and Native American researcher Robert Warrior who critique dominant epistemologies. Asante’s (1987, 1988, 1990) work in particular provides inspiration for viewing and challenging knowledge usage and positionings of marginalised peoples. Rigney outlines that,

If Indigenous intellectual sovereignty is to be emancipatory it must be ‘process driven’ rather than outcome oriented...it is now for Indigenous scholars committed to sovereignty to realise that we too must struggle for intellectual sovereignty and allow for the definition and articulation of what that means to emerge as we critically reflect on our struggle (2001: 10).

In order to bring about the required changes within the knowledges bases, there must be a link between research and the political struggle of our communities. This link needs to be made by both Aboriginal and Torres Strait Islander Australians and non- Indigenous Australians. There are a number of capacity building projects in Australia that involve Aboriginal and Torres Strait Islander people increasing their health research capacity and which are attempting to foster the links between research and the political struggle of Indigenous communities. James Cook University (JCU) has a NH&MRC capacity building grant enabling the development of research skills and knowledge, attendance at key conferences and provides the opportunity for Indigenous researchers to work alongside key researchers in health in Australia. Associate Professor Jacinta Elston at JCU has been instrumental regionally, nationally and internationally in advocating for increased numbers of Indigenous health researchers. This was evidenced at the recent International Network of INDIGENOUS HEALTH Knowledge and Development (INIHKD) Conference held in Rotorua, Aotearoa, New Zealand from 14-18th October 2007. There are also examples to be found of Indigenous research capacity building and mentorship that cut across other disciplines. For example, Dr Aileen Moreton-Robinson’s appointment as Professor of Indigenous Studies at the Queensland University of Technology (QUT) will see her work across the university. Professor Moreton-Robinson has already made significant progress in the development of Indigenous research capacity, establishing a network of Indigenous scholars and fostering debate on the nature of Indigenous Studies in Australia. The Indigenous Symposium and Master Class she offers each The Indigenous researchers being developed through the NH&MRC capacity building grants, key academic appointments of Indigenous people in higher education institutions and other initiatives will be key factors in Indigenous research in the future.

What we might also expect to see more of in the future:

• Increased number of Indigenous researchers involved in grants as Chief Investigators;
• Increased number of Indigenous researchers presenting research work at conferences;
• Increased number of Indigenous researchers named in documents as coresearchers and as Chief Investigators and quoted;
• Increased number of academic publications detailing research and conceptual and theoretical analysis, including books written by Indigenous scholars, e.g. Sovereign Subjects Indigenous Sovereignty Matters (Moreton-Robinson, 2007);
• Greater emphasis on Indigenous controlled peer-reviewed journals, e.g. ALTERNATIVE (NZ), Aboriginal Health Journal (Canada); the International Journal of Critical Indigenous Studies (to be launched early in 2008);
• Increased number of Indigenous researchers on assessment panels;
• Greater cross-country /inter-country collaboration;
• Increased emphasis on urban Indigenous communities;
• A review of the NH&MRC RoadMap; and
• Increased academic struggle between non-Indigenous and Indigenous researchers over Indigenous content in health and other disciplines.

In concluding I wish to offer a quote from Carolyn Kenny (2000) who advocates and calls upon us to enact our rights as sovereign peoples within the realms of research,

Aboriginal research is an opportunity for us to create innovation and change for our people. If we develop an approach to research which is unique and reflects our values and beliefs, we will be reflecting the spirit of our ancestors, the spirit of our people who are alive today, and the spirit of our Aboriginal children who are yet to be born (2000:148).

References

Asante, M.K. (1987). The Afrocentricity Idea. Philadelphia: Temple University Press.
Asante, M.K. (1988). Afrocentricity. Trenton NJ: Africa World Press.
Asante, M.K. (1990). Kismet, Afrocentricity and Knowledge. Trenton NJ: Africa World Press.
Aboriginal and Torres Strait Islander Commission (1994). Draft Discussion Paper – Research Ethics For Undertaking Economic Development Research relating to, involving and about Aboriginal and Torres Strait Islander peoples, Canberra: Aboriginal and Torres Strait Islander Commission.
Aboriginal Research Institute (ARI) (1993). Ethics in Aboriginal Research, Adelaide: Aboriginal Research Institute, University of Adelaide.
Australian Institute of Aboriginal and Torres Strait Islander Studies (AIATSIS) (2000). Guidelines for Ethical Research in Indigenous Studies. Canberra: Australian Institute of Aboriginal and Torres Strait Islander Studies. Retrieved 27 March, 2007, from http://www.aiatsis.gov.au/_data/assets/pdf_file/2290/ethics_guidelines.pdf.
Battiste, M. (1995). Introduction in M. Battiste and J. Barman, Jean (Eds.) First Nations Education in Canada: The Circle Unfolds, Vancouver: University ofBritish Columbia Press, pp.viixx.
Cruse, S. (2001). Encouraging Research Guidelines to be put into Practice : An Aboriginal Health Research Ethics Committee in Action, Kaurna Higher Education Journal, 7: 23-27.
Gilbert, S. (1995). The Role of Non-Indigenous Researchers Employed in Aboriginal and Torres Strait Islanders Programmes in Universities, Indigenous Research Ethics Conference, 27-29 September, 1995, Townsville: Centre for Aboriginal and Torres Strait Islander Participation, Research and Development, James Cook University (Unpublished Work).
Henderson, James Sa’ke’j Youngblood (2000). Challenges of respecting Indigenous World Views in Eurocentric Education In R. Neil (Ed.) Voice of the Drum: Indigenous Education and Culture (pp.59-80). Brandon, Manitoba: Kingfisher Publications.
Kenny, C. (2000). A Sense of Place: Aboriginal Research as Ritual Practice. In R. Neil (Ed.) Voice of the Drum: Indigenous Education and Culture (pp.139-150). Brandon Manitoba: Kingfisher Publications.
Monture-Angus, P. (1995). Thunder in my Soul A Mohawk Woman Speaks, Halifax: Fernwood Publishing.
Moreton-Robinson, A. (2007). Sovereign Subjects Indigenous Sovereignty Matters, Crows Nest: Allen & Unwin.
Nakata, M. (1998). Anthropological texts and Indigenous standpoints, Australian Indigenous Studies (pp.3-12). Canberra: Australian Institute of Aboriginal and Torres Strait Islander Studies.
National Health and Medical Research Council (1991). Interim Guidelines on Ethical Matters in Aboriginal and Torres Strait Islander Health Research, Canberra: National Health and Medical Research Council.
National Health and Medical Research Council (1994). Canberra: National Health and Medical Research Council. Ethical Aspects of Qualitative Methods in Health Research. A Consultation Document
National Health and Medical Research Council (1999). National Statement on Ethical Conduct in Research Involving Humans, Canberra: Australian Health Ethics Committee, National Health and Medical Research Council.
National Health and Medical Research Council (2002). Draft Values and Ethics in Aboriginal and Torres Strait Islander Health Research Consultation Draft – 13 November 2002 Canberra: National Health and Medical Research Council.
National Health and Medical Research Council (2002). The Aboriginal and Torres Strait Island Research Agenda Working Group (RAWG), The NHMRC Road Map: A Strategic Framework for improving Aboriginal and Torres Strait Islander Health through Research. Canberra: National Health and Medical Research Council.
Rigney, L-R. (1997). Internationalisation Of An Indigenous Anti-Colonial Cultural Critique Of Research Methodologies: A Guide To Indigenist Research Methodology And Its Principles. Higher Education Research And Development Society Of Australasia (HERDSA) Annual Conference Proceedings; Research and Development in Higher Education: Advancing International Perspectives, 20, 629-636.
Rigney, L-R. (1999). The First Perspective: Culturally Safe Research Practices On or With Indigenous Peoples, 1999 Chacmool Conference, University of Calgary, Canada. Unpublish
Rigney, L-R. (2001). A First Perspective of Indigenous Australian Participation in Science: Framing ed Paper. Indigenous Research Towards Indigenous Australian Intellectual Sovereignty. Kaurna Higher Education Journal, 7, 1- 13.
Roberts, D. (1994). Changing the Hierarchy of Power in Aboriginal research: Towards a More Collaborative Approach. Kaurna Higher Education Journal, 5: 36
Royal Commission into Aboriginal Deaths in Custody (RCIADIC) (1991). National Report. 1,2,3 Canberra: Australian Government Publishing Service.
Smith, L.T. (1999). Decolonising Methodologies Research and Indigenous Peoples London: Zed Books.
Warrior, R. (1995). Tribal Secrets: Recovering American Indian Intellectual Traditions. Minneapolis: University of Minnesota Press.
Warrior, R. (1999). The Native American Scholar: Towards a New Intellectual Agenda. WICAZO Review: Journal of Native American Studies, 14(2), 46‑55.
Wheaton, C. (2000). An Aboriginal Pedagogical Model: Recovering an Aboriginal Pedagogy from the Woodlands Cree In R. Neil (Ed.) Voice of the Drum: Indigenous Education and Culture (pp.151-166). Brandon, Manitoba: Kingfisher Publications.