Ethics in context: essential flexibility in an international photo-elicitation project with children and young people

ABSTRACT

Existing literatures have discussed both ethical issues in visual research with young people, and the problems associated with applying ‘universal’ ethical guidelines across varied cultural contexts. There has been little consideration, however, of specific issues raised in projects where visual research is being conducted with young people simultaneously in multiple national contexts. This paper contributes to knowledge in this area. We reflect on our experiences of planning and conducting the International CYCLES project involving photo elicitation with young people in Bangladesh, Brazil, India, Japan, New Zealand, South Africa and the UK. While some issues such as varying access to technology for taking and sharing photos and diverse cultural sensitivities around the use of photography were anticipated in advance, others were more unexpected. Balancing the need for methods to be appropriate, ethical and feasible within each setting with the desire for sufficient consistency across the project is challenging. We argue that an ‘ethics in context’ approach and an attitude of ‘methodological immaturity’ is critical in international visual research projects with young people.     

Disabled citizens as researchers – Challenges and benefits of collaboration for effective action and change

ABSTRACT

This article reports on the evaluation of an initial pilot for a collaborative research project undertaken in an English county between a service user-led Coalition of Disabled People, the local authority and local university. The project sought to map the assets and resources for/of disabled people in their local community as well as needs and gaps, to inform the Coalition’s strategic planning and raise awareness of disability issues across the county.

The article discusses an inclusive, co-productive approach using participatory action research. It focuses on experiences from the pilot stage of the project and considers how the authors worked together with the required knowledge exchange and power-sharing to recruit and train researchers with expertise from their personal experience of disability. Recruitment ensured they had relevant qualities and skills that could be developed, to increase their confidence, knowledge and skills set as researchers. They then undertook photo-elicited, semi-structured interviews with other disabled people, analysed findings and created photographic exhibitions for dissemination and awareness raising.

Demonstrating a commitment to emancipatory research and collective action for change, the discussion considers the promotion of shared values within the research team, and explores the benefits and challenges encountered during the process and how the particular stages were managed to achieve the beneficial outcomes of the pilot. The article seeks to add to the literature of participatory/emancipatory action research for social work.     

Research project on advocacy and autism

This article presents the findings of a qualitative research project about the difficulties in accessing advocacy faced by adults labelled as having autism and Asperger's Syndrome in the Northwest of England. It is also an example of partnership working between three organisations. The article examines both the process of team-led (emancipatory) research and the project findings. Seven main themes emerged throughout the research: late diagnosis and lack of service support; bad experiences with systems of care; feelings of 'not belonging' (identity issues); barriers around communication and sensitivity towards individuals; lack of awareness and access to advocacy and rights; difficulties of 'fitting into' what is already available; and interest in developing knowledge around advocacy. Examination of the main themes pointed to a disturbing link between poor service response, episodes of crisis and mental ill health. The Carlisle People First Research Team is made up of 6 researchers who are labelled as having 'learning difficulties' who work in partnership with one other researcher.     

What's Wrong with Being Poor? The Problems of Poverty,as Young People Describe them

This article explores how young people living in low‐income neighbourhoods problematise their own lives, using data generated as part of a participatory policy project with five groups of young people, aged 11–21. Three common problems were identified; housing, education and crime, as well as one common silence around their own agency. This silence is perhaps substituted by a focus on collective agency and politics, suggesting that perhaps young people can see poverty as a more collective problem than previous research may highlight.     

Voice,authenticity and ethical challenges: the participatory dissemination of youth-generated visual data over social media

Using the theoretical frameworks of childhood studies and visual ethics, this article explores ethical ways of engaging children and young people in disseminating self-generated visual data (‘participatory dissemination’) over social media. The discussion draws on a research project carried out with a group of young people in an underserved community in South Africa. The project was an educational intervention that aimed to enable the participants to bring out their experiences with the HIV and AIDS pandemic in South Africa and to reflect on related issues through participatory video making. The methodological focus was on exploring visual ethics in the context of participatory dissemination. Despite a growing interest in social media, few studies have been conducted in relation to ethics in using social media as an outlet to disseminate visual data created by young people. This article contributes to addressing this knowledge gap. It is argued that (1) the process of remaking visual data can enhance the ethics of dissemination by offering young participants an opportunity to reflect on self-representation more carefully and (2) the verbal contextualisation of participant-generated visual data can contribute to a further clarification of young people’s ideas, thereby making dissemination more ethical. I am cautious, however, to overstate the significance of disseminating young people’s verbal and visual expressions without researchers’ discretion because such expressions may contribute to stigmatising the young people.     

Research initiation based on idea-circles: from research object to co-actor

This article details an evaluation of a research project based on participatory research methods organized by the Swedish Disability Federation from 2008 to 2011. In Sweden there has been a lack of productive dialogue with the traditional academic world and the question was raised whether proposals for future research would be different if disabled people formulated them. Nine idea-circles with disabled participants and invited researchers from fields of interest close to the participants produced ideas, developed out of the life experience of being a disabled person. These ideas were developed into 72 research drafts that often reflected key advocacy areas, rather than operationalized research issues. The adjustment from the familiar discourse of political struggle to discussion of research was a complicated process for many. When asked to prioritize among areas for research, the representatives from the disability movement chose areas that are not stressed in mainstream disability research in Sweden.     

Participatory Action Research with Youth in Bosnia and Herzegovina

SUMMARY

Sparked by a global UNICEF initiative, Bosnia and Herzegovina launched a participatory action research process in which 75 young people in three towns explored local understandings, needs, and actions about HIV/AIDS, drug use, human rights, and other issues. This article chronicles the research process, the action recommendations generated by young people, and the current status of the project. It reflects on the commitments and efforts which are required when large, adult-directed organizations decide to promote youth participation, and on the institutional changes necessary to support sustained youth participation that benefits ordinary youth rather than a selected few.     

Race Talk and Local Collective Memory among African American Men in a Neighborhood Tavern

This article examines how African American men, through face-to-face conversation, create individual and collective memories around issues of race. I use ethnographic data collected in an African American neighborhood tavern in Chicago to argue that tavern patrons' race talk: 1) generates a collective memory of negative interracial interaction that gives reported racial encounters a compounding effect; and 2) empowers patrons through catharsis and gives them an opportunity to re-create themselves with a positive racial self-identity. Consequences of this microlevel collective memory for interracial interaction are discussed.     

Researching Disability Politics, Or, Some Problems with the Social Model in Practice

This article arises from a research project involving the disabled members' group in UNISON, and problematises the social model which explicitly undergirds the discourses and practices of this group. In abstract terms, there are dangers that the social model can be interpreted in a way which privileges some impaired identities over others, sanctions a separatist ghetto which cannot reach out to other groups of disabled and disadvantaged people, and weaves a tangled web around researchers who adhere to the emancipatory paradigm. In concrete terms, these dangers are explored with reference to the stories of impaired people who believe that they are excluded from the disabled members' group, the predicaments of ex-disabled and differently-disabled people in relation to the movement, and the culture of suspicion surrounding academics, particularly the 'non-disabled' researcher as would-be ally. It is argued that, whilst such identities and issues might appear to be 'marginal' ones in the sense of occurring at the boundary of disabled communities, disability politics and disability studies, they should not be 'marginalised' by disabled activists and academics, and indeed that they pose challenges to our collective identities, social movements, theoretical models and research paradigms which need to be addressed.     

Doing disability research in a Southern context: challenges and possibilities

Research on disability issues in countries of the South is primarily dominated by a focus on generating large scale quantitative data sets. This paper discusses the many challenges, opportunities and dilemmas faced in designing and undertaking a qualitative research study in one district in India. The Disability, Education and Poverty Project (DEPP) aims at exploring the role of education in the lives of young people with disabilities living in poverty. A central focus of the research is to engage with the young people with disabilities themselves and to understand how they construed their lives and experiences. This paper discusses three issues which are of central concern to the project: identification of the sample group, appropriateness of the research methods and, finally, an examination of the assumptions underpinning the research process.     

Comics and visual biography: sequential art in social research

This article describes the use of comics in a mixed methods biographical research project aimed at understanding the experiences of vegans (i.e. people who eschew animal products such as meat, dairy and eggs). It begins with a discussion of Comics Studies as a growing interdisciplinary field of academic inquiry, and attempts to trace a connection between this and Visual Sociology more broadly. It then provides examples of the way in which comics were used in the project and the rationale underpinning this. Participants were asked to create comics about their lives, which aimed to supplement biographical interviews that had already taken place, eliciting rich ‘visual biographical’ data that an interview would not produce. Comics were also used as a mode of representation, whereby a ‘visual autoethnography’ was produced, outlining the author’s reflexive autobiographical relationship with veganism, and telling the story of the research. This project presented challenges, specifically around participation, ethics and anonymity, and data analysis. Despite this, the comics produced provided an unusual and valuable insight into the lives and experiences of vegans. To conclude, this article argues that the visual biographical data yielded through the use of the Comics medium represents a valuable tool in visual sociology.     

Long-arm practice teaching for the diploma in social work: the views of students and practice teachers

This article draws on my current and past memories, on some of the literature around post-graduate research and study in higher education, and on some of the literature linked to the subject of the PhD. It begins by outlining the process of study and indicates some of the benefits and drawbacks of returning to the student role. There follows some discussion of my marginal and shifting position in theoretical terms and how, in a number of ways, this mirrored the position of those I was researching. The article addresses some of the dilemmas that arose during the research, particularly in relation to age and sexuality, including problems of a restricted, adult perspective and the difficulties of involving children or young people in research. My impact as a researcher, and the influence of my appearance, use of language and background as a social worker are also considered. The article suggests that what the PhD was really about was jumping through a series of hoops, particularly those created by myself. It concludes that personal reflection, particularly reflection on my own insecurities throughout the process, may continue to influence my personal and professional development.     

Utilization of Family Photos and Movies in Family Therapy

This article discusses a technique the authors have designated Family Photo Reconnaisance. They describe the rationale for and process of utilizatizing family photographs and movies in family therapy sessions to evoke past events and memories and to uncover feelings about these occurrences and the people involved in them. Through their utilization, how one has changed over time is vividly seen. Who is missing from the constellation and when they "dropped out of the family orbit becomes obvious as do distorted memories. Family members reexperiencing the past together around their photographs come to better appreciate one another's current feelings and behavior and often are enabled to gain mastery over unresolved conflicts.     

The development and evolution of Reclaiming Futures at the ten-year mark: Reflections and recommendations

Reclaiming Futures has been a successful national demonstration project, initially funded by the Robert Wood Johnson Foundation, which seeks to improve a system-wide response to young people in the juvenile justice system with substance abuse issues. The initiative is a multiyear effort that has included complex simultaneous community and cross-system planned change efforts. The intention of the initiative is to develop, test, and disseminate a response to unmet needs and to extensive gaps and fragmentation in the availability and quality of services and opportunities that would have a positive impact not only on the lives of individual youth, but on community capacity to engage and encourage youth success as well. This article summarizes the developmental trajectory of the initiative, with a focus on elements of the planned change process. How change efforts were conceptualized, sequenced, executed, and evaluated are discussed and their implications explored. Now adopted in 29 communities around the nation, this article describes two federal and state dissemination efforts as examples of its continued expansion.     

Digital baroque: New media art and cinematic folds

The decision to use participatory visual methods with young people in education, health or public policy research is linked to a desire to allow them to have some greater voice in the research and the professional activities that impact on their lives. But how that ‘voice’ is produced, whose voice it represents, and how the product of that research is used and interpreted are all contentious issues for researchers. This article analyses some of these conceptual, methodological, political and pragmatic issues from the perspective of a current Australian Research Council-funded project working with young people across education and health domains. It is argued that allowing or not allowing visual accounts to speak for themselves is not simply a political decision but one related to epistemological understandings about meaning, and also to different purposes of different visual projects, in particular their relative emphasis on voice as a window to the world of the young people, compared with voice as a window to ‘who I am’. The project discussed is one which aims to give greater authority and centrality to the visual accounts and voices of young people, but also one where researchers understand both the visual and voice as constructed rather than given. Case studies from the project are used to illustrate the way in which these commitments frame decisions about technology and methodology, and also to show and argue for an approach which treats the meaning of the visual evidence as something to be constructed ethnographically and reflexively over time.     

Working With Parents of Gender-Variant Children: Using Social Action as an Emancipatory Research Framework

This article examines and reflects on the methodology used in a research project that involved group work activities with parents of gender-variant children. Gender variance in children remains a topic people talk little about. Discussions about people who express themselves differently from the social norms attached to their birth sex, to a large extent, remain rarely discussed. They challenge a society organized largely on the basis of a binary understanding of identity, one that belongs to either male or female. This article discusses the concept of oppression as being central to the experiences of gender-variant children and young people and their parents, and it proposes social action research as a compatible and appropriate research framework for exploring their experiences. We describe the research process, identify its achievements, and explore issues that had to be confronted. We suggest that traditional research structures may benefit from being revisited in order to allow emancipatory research to more fully achieve its potential for both research and social action.     

Memories of the Massacre: Violence and Collective Identity in the Narratives on the Nellie Incident 1

This article is the first intensive academic research on the massacre of February 1983 near Nellie, a rural area in Assam, India. This incident saw the Tiwas, an ethnic group based on the Assam plains, attack the Bengali Muslims, who were immigrants, with about 1,600 people being killed. The context of the massacre was a movement by the dominant community against foreigners, especially East Pakistani and Bangladeshi immigrants, from 1979 to 1985. The framework of discussion is that nations construct their identities, at least to some extent, from violent episodes that see the subject attacked by the 'other'. The main part of the research method was on-the-spot interviewing, not to ascertain factual material but to find out the freely expressed views of people on memories and interpretations of the massacre, and specifically what had caused it. The paper argues that, in Assamese society the dominant narrative on the massacre was that of the Assamese intellectuals, while those of the minority groups were subordinate. The minority groups decided whether to establish their own historical identities largely on the basis of their choice whether to seek for autonomy or to assimilate with the dominant community.     

‘Unjust,inhumane and highly inaccurate’: the impact of changes to disability benefits and services – social media as a tool in research and activism

This article details research carried out as part of an MA in Social Research at the University of Leeds (UK). The research was concerned with two key issues: documenting the impact of recent cuts in benefits and services on disabled people; and the role of disabled people’s organisations in responding to this impact. It also explored the use of social media in recruiting research participants. Working with Hammersmith and Fulham Action on Disability, the experiences of 95 disabled people were gathered using focus groups and an online questionnaire distributed via social media. The use of social media to gather participants is something I felt was particularly interesting in relation to disabled people, especially in light of social media’s role in current disability rights campaigns, and a method I feel should be explored further.