As human beings, we live our lives as storytelling animals. We are born into a world of stories and storytellers, ready to be shaped and fashioned by the narratives to which we will be exposed. The stories we hear and the stories we tell are not only about our lives, they are part of them. Our lives are rooted in narratives and narrative practices. We depend on stories almost as much as we depend on the air we breathe. Air keeps us alive; stories give meaning to our existence. (Bochner and Ellis, 2016: 75–6)

The key to change lies in the stories people tell. By naming the world, we change it (Freire, 1972). Stories of everyday life transmit culture and maintain the dominance of the status quo. In telling our stories, questioning them, critiquing them in relation to the dominant narrative, we open the space for a new story, engaging in a dance of ideas in the search for a better story to replace the old one. Our first encounters as participatory practitioners begin with the way we listen from the heart to the stories of everyday life as it is experienced. This is the foundation of critical dialogue, the point at which trusting mutual relations are formed. In a process of mutual dialogue and reflection, we learn to question the stories we tell, and by examining them a little more critically we find they contain the key to understanding the personal as political.

Transformative practice aims to bring about social change for a kinder, more just and sustainable world. Therefore, participatory practice is inevitably transformative in intention. As we argued in Chapter 4, the weak link is that ‘participation’ as a concept is poorly understood and often diluted. Participatory practice is action for a participatory democracy: not a feelgood factor that involves local people in local projects but practice which follows through to collective action by involvement in global movements for transformative change. This is precisely the point at which practice reaches out from being tokenistic or partial to connect with change that reaches structural discrimination and human rights violations. What an enormous task, you may say, and I would agree, but would add that there are some extremely straightforward ways to go about it. This chapter looks at the ideas, skills and structure involved in taking practice forward confidently into its transformative agenda. Its focus is connection! This is precisely why the ideas discussed here transcend false boundaries to connect across human being in its full extent: intellectual, physical, emotional, spiritual, ecological … Everything about life is inextricably interconnected, and atomisation of thought results in fragmented action, reducing practice to a disconnected, ameliorative activity without potential for transformation. For these reasons, participatory practitioners see a participatory worldview as an integrated whole, with respect and responsibility for everyone and everything, a healthy, happy world in balance.

The universal is in the particular.… We are all part of one another, interconnected beyond the separations made by the mind. (Quinney, 1998: xi)

We are all interconnected, inextricably part of life on Earth. We need each other to survive, and we need the planet, which is our home, to be healthy and in balance. A world in balance is the way forward for people and the planet to flourish. By this I mean we are part of an ecosystem that is in self-adjusting balance – until it is taken to its extremes. Neoliberal capitalism has exploited inequality to an unsustainable extreme and environmental degradation beyond levels of recovery – unless we change our ideology now. In this book, we challenge the idea that the strong and ruthless rule the world. Even Darwin, who is associated with the idea of survival of the fittest, was impressed with the kindness and cooperation he witnessed in nature and wrote that the communities with the kindest people would flourish best (Hare and Woods, 2020). Lead from a kind heart and cooperation flourishes. These ideas form the bedrock of this book.

The world we create is founded on the values we live by. It is those values that shape the way we see the world, the policies that get embedded into law, and the way we act towards each other and the environment. This creates a mutually reinforcing system, but it is the values we choose to adopt that frame the lens through which we see the world and which influence the way we act in the world. Values lie at the heart of the matter!

Ermine et al write of an ‘ethical space’. This conceptual space ‘between the Indigenous and Western worlds’ (Ermine et al, 2004: 19) ‘provides a venue within which to articulate the possibilities and challenges of bringing together different ways of coming to knowledge and applying this theory to the practice of research’ (Ermine et al, 2004: 16). Chilisa, too, writes of a ‘space in between’ the Euro-Western and Indigenous paradigms. This space:

involves a culture-integrative research framework. This is a tapestry, a mosaic of balanced borrowing of less hegemonic Euro-Western knowledge and its democratic and social justice elements and combining it with the best of the democratic, liberatory, and social justice essentialized indigenous knowledge and subgroups’ knowledges. (Chilisa, 2012: 25)

This book has attempted to work within that ethical space in between by balancing the Euro-Western and Indigenous paradigms alongside each other, with the aim of finding out what may be learned from their differing approaches to research ethics. It is ethical to question ‘the hegemonic role of colonialism ... in the construction of knowledge’ (Chilisa, 2012: 123). This hegemony is evident in academia in so many ways:

1. the colonised curriculum, in which no Indigenous scholars are represented (le Grange, 2016: 6);

2. the colonisation of methodology, such that Indigenous research methods are judged by Euro-Western standards (Wilson, 2008: 30);

3. the colonisation of process, such that Indigenous researchers are forced to justify their long-established approach to research in more recent Euro-Western terms (Wilson, 2008: 30–1);

4. research still being done by Euro-Western researchers, using Euro-Western methods, on Indigenous peoples, communities and lands (Kovach, 2009: 28; Rix et al, 2018: 7); and so on.

This is massively unethical, so another aim of this book has been to question, and perhaps make a small contribution to dismantling, that hegemony.

Most Indigenous researchers do not separate ethics from research as a whole (Kovach, 2009: 142). Yet the Euro-Western system of research ethics regulation is not going to go away any time soon. Some would argue that it should not. But it does need to change, to become more flexible and accessible, to be more aware of

In the Euro-Western paradigm, the potential need for research aftercare is rarely recognised or discussed.

“I just think that’s a great question! Because it never comes up! I think it’s a great question and it’s one I’m going to think about for some of my ethics training and lecturing. You’re right, the research is done, the researchers leave, the participants might get a two-page summary and that’s the last they hear of it.”

“Do we have a duty of care for any audience? Or should we only be considering the ethics of the research? A medical thing will say ‘we’ll give you a counsellor for three months if you need it’; I could see an art exhibition having that effect, only on a small percentage but ethically every member of that audience needs to be cared for. This comes into practicalities: is it possible to resource? If there hasn’t been a case, is it ‘reasonable risk’? These are issues that perhaps aren’t being thought about. All I would say at this stage is, they should be thought about, so there are no surprises.”

Some Euro-Western researchers do think about aftercare, at least to some extent. For example, some ethnographers advocate ‘friendship as method’ (Tillmann-Healy 2001, cited in Ellis, 2007) and acknowledge that, if this is the case, ‘there is no leaving the field’ (Ellis, 2007: 13). However, this seems mostly to happen at an individual level rather than with any team or institutional encouragement.

“Making sure that people know what happens with the research, that’s always been important to me. It has been before I knew what participatory research was – don’t just parachute in and parachute out. Even if they weren’t involved in writing or interpretation, that they get to see what’s produced at the end as a minimum. I’ve got my own invisible minimum requirements, then those might expand and extend depending on the nature of the project.”

All research needs to be contextualised. Whether in the Euro-Western or the Indigenous paradigm, any piece of research is part of the worldwide exchange and development of knowledge that has gone on – and will go on – throughout human history. Some people think of this as a conversation. As with face-to-face conversations, there are ethical considerations: it’s important to take turns to speak, listen attentively and be polite and respectful to your fellow discussants. In research, the metaphor of the conversation includes the whole process, not only the parts involving actual speech.

“With my recent study, I had good intentions, but I had to be careful that my intentions didn’t trample on the intentions of previous people who have informed this body of knowledge.”

This interviewee is aware of the conversation between their intentions and those of others, which they needed to listen to and respect in their own work. This chapter will show you what this means in practice when you are contextualising your research.

There are different ways to contextualise different kinds of research. Academic research is usually contextualised through a literature review. Evaluation research will probably be contextualised through a document analysis. Participatory or community-based research may be contextualised through face-to-face conversations between people. There are no hard-and-fast rules about how research should be contextualised. It is, though, important that it should be set in context.

There are two main reasons for this. First, the work involved in contextualising research helps to clarify ideas about what to investigate and why; perhaps also how to make that investigation.

Researchers sometimes invent data to make their results look better. A notorious example from the 21st century is that of the Korean stem cell researcher Hwang Woo-suk, who reported that he had been able to create human stem cells by cloning. It was later found that his data had been fabricated, although he claimed that he was deceived by other members of his research team. He lost his job at Seoul National University and received a suspended prison sentence for embezzlement of research funding and other ethical violations, although he was cleared of fraud. Sadly, he is not unusual. A meta-analysis of surveys of scientific misconduct found that around one in 50 scientists admitted fabrication, falsification or modification of data or results, and up to one in three admitted various other unethical practices such as making changes to research in response to pressure from funders (Fanelli, 2009: 8).

Data manipulation is subtly different from data fabrication because, rather than being invented, real data is presented inaccurately. This could be done, for example, by combining interesting factors from several otherwise uninteresting cases to create one interesting case for presentation. (In some forms of research, it is acceptable to create a composite case, if that composite case is authentic and recognisable as representative of the individual cases and the researcher makes it clear that the case is a composite.) Another way data could be manipulated is by using software to change the presentation of visual data. There is nothing wrong with using software to improve a visual image, such as by adjusting the brightness or contrast of a whole picture to make it easier to view.

Data gathering is the phase of research that receives most ethical scrutiny within the Euro-Western paradigm. This is partly because it carries most risk to institutions: if participants are unhappy with the way they are treated by researchers, they may take legal or social action against the institution concerned. Therefore, most ethical scrutiny focuses on participant well-being. It is of course an ethical imperative for researchers to do all they can to ensure the health, happiness and safety of people who are participating in their research. And not only individual people, as this interviewee recognised:

“I’ve been doing a project in a school; it reflects what’s going on in the school, but how do I protect the school?”

For some laboratory-based researchers, there is a straightforward way to manage this:

“Ethically, I’m participant #1 in all my studies because I would never ask someone to do something I wouldn’t do, and I need to see it works properly.”

But those who work in more naturalistic settings can’t use this approach. Also, there are many other ethical dimensions to consider when planning and carrying out your data gathering. Many are not covered by formal ethical approval systems, and (as we saw in Chapter 4) some may even be caused by those systems.

“There’s a real danger of research suffering because of ethics. It’s a fine balance. It’s ethically problematic if the research is failing. Anonymisation doesn’t necessarily make the research stronger, it makes it more ethical, and that is an interesting balance to be struck.”

This is very much a Euro-Western perspective and is based on the premise that researchers have no relationship with participants except through the research (Ellis, 2007: 5).

As we saw in the previous chapter, dissemination involves sharing data and publicising research beyond that which you can do in person. Dissemination itself is an ethical imperative for researchers, particularly if the work is resourced from public or charitable funds, as this interviewee was keenly aware.

“Dissemination is now beyond the confines of academia; you’ve got new audiences. We need to look at the consequences of our findings on new audiences and how we communicate these. Is there an ethical responsibility to share our results? Yes there is. Do we do it? Probably not all the time. And therefore do we start thinking about academic language and access to results? This is really pressing. If it’s about them, they should have the rights to the results. I’d like impact to start to be seen from an ethical point of view, rather than just a government funding type issue. There are ethical issues about sharing results beyond academia particularly if it’s government funded.”

This is partly because it is ethical to share information and knowledge gained, and partly because it is ethical to make the most possible use of research findings.

“There’s no point doing research unless you take it into policy and practice and make a difference.”

There are many ways to disseminate research, and some are more ethical than others, depending on the context. You can disseminate information online; in hard copy; using text, images, video; in academic journals or other formal publications, or by self-publishing; through mainstream media; using social media; through an exhibition or installation; or in a range of other creative ways from graphic novels or zines to interpretative dance (Gaudry, 2015: 257; Kara, 2015: 161).