No African renaissance without disabled women: a communal approach to human development in Cape Town South Africa

The African Renaissance is upon us. Those who have eyes to see, let them see.

Disabled women who live in wooden shacks in the peri-urban areas of Khayelitsha in Cape Town, South Africa, participated in storytelling workshops over a two-and-a-half-year period. They shared experiences of what helped or hindered their social and economic development since becoming disabled. The workshops were part of a participatory action research (PAR) study of the Division of Occupational Therapy, University of Cape Town, together with Disabled People South Africa (DPSA) and the Zanempilo Health Trust [formerly South African Christian Leadership Assembly (SACLA) Primary Health Care Project].

The findings revealed the struggles and sadness, as well as the strengths and spirit that the women experienced within their every day context at an individual, family and community level. The women spoke strongly about meeting physical, emotional, and spiritual needs (human development) as the means to social and economic development.

The discussion reflects on the many paradoxes of disability encapsulated in the essence of interdependence of Ubuntu. Three themes discussed are building emotional resourcefulness: nurturing children and families in disability issues; and renewing spirituality and Ubuntu in disability and development programmes. In conclusion, managing the paradoxes of disability, the creation of a new individual and collective identity, and the capacity to change are proposed as the way forward.     

Participatory action research: Easier said than done

This article describes participatory action research as an alternative methodology for conducting community needs assessment. The research model empowers individuals by recognizing they have the ability to identify their own needs, and to generate practical long lasting solutions (Rappaport, 1981). A case study is presented in which two community members attempted a participatory community needs assessment. The article concludes with a discussion of how this attempt deviated from the ideal participatory action research model, and the consequences of the compromises made during the research process.     

An exploration of factors which may influence how teachers perceive participatory action research tools being employed in schools

This article draws on a lead researcher's observations about participatory research collaboration within a qualitative research project involving teachers, pupils and members of the communities surrounding schools. It presents a practical account of research processes aimed at uncovering to how pupils, teachers and community members in economically and socially disadvantaged neighbourhoods perceived their own roles in relation to creative activity with groups of children, who had been identified by their schools as being in need of help to engage in learning. The activities were led by artists who would not normally be involved in schools. Social constructionist frameworks for evaluation are combined with the literature on participatory appraisal, in order to suggest a politically sensitive course of action by which practitioners and peer interviewers could be involved more usefully in the future, through direct collaboration on the planning tasks to reveal rarely articulated pupil attitudes.     

Managing expectations in participatory research involving older people: what’s in it for whom?

Participatory research actively engages participants in some or all stages of the research process – from deciding on scope and problem statement to actively collecting data to disseminating results and effecting change. Considering the shifting roles of participants and researchers in participatory ageing research, to the academic, participatory research becomes a venture into project and people management, local politics, consultancy and community building. First, we present a literature overview of the promises and pitfalls of participatory research. Then, drawing on a university initiated participatory study involving older people as co-researchers in a neighbourhood in Groningen, the Netherlands, we discuss the shifting roles and expectations of all of those involved in the participatory research process. We conclude that a central question that requires continuous negotiation in the participatory research process is: what’s in in for whom?     

Negotiating a third space for participatory research with people with learning disabilities: an examination of boundaries and spatial practices

The focus of this article is participatory research with and by people with learning disabilities. Drawing on discussions that took place across a series of seminars, we use the concepts of space and boundaries to examine the development of a shared new spatial practice through creative responses to a number of challenges. We examine the boundaries that exist between participatory and non-participatory research; the boundaries that exist between different stakeholders of participatory research; and the boundaries that exist between participatory research with people with learning disabilities and participatory research with other groups. With a particular focus on participatory data analysis and participatory research with people with high support needs, we identify a number of ways in boundaries are being crossed. We argue that the pushing of new boundaries opens up both new and messy spaces and that both are important for the development of participatory research methods.     

Improving research about us,with us: a draft framework for inclusive autism research

It is both epistemologically as well as ethically problematic if the autistic voice is not heard in relation to social scientific research seeking to further develop knowledge of autism. Ever since autism first emerged, it has remained medicalised and almost exclusively the preserve of non-autistic researchers. More recently, autistic individuals have begun to contribute to autism research. However, the vast majority of research in autism is still undertaken on autistic people, rather than with them, and is often not concerned with improving the day-to-day lives of people with autism. We discuss the concepts of participatory research and emancipatory research before presenting a draft framework for what we regard as truly inclusive research in autism. Our proposals are firmly based on ideas developed by the members of a university-based group of autistic adults (the Asperger’s Consultation Group) as well as the knowledge and experience of the other contributors.     

Conflicts between activist research and academic success: Participatory research and alternative strategies

The article compares participatory research and alternative activist approaches, based on the literature on participatory research and interviews with nine successful sociologists who use alternative approaches. Participatory research, distinguished by high control over research by community members, equalizes power within the research process, but often retards academic publication and career advancement. The interviews show that successful academics retain control over their research, experience mild to severe conflicts with departments, and develop various strategies for combining activism and career success. All types of activist research are more effective in challenging inequality if they involve activist community organizations. Her research has focused on family, gender, and feminist and participatory methods. Recent publications includeLove in America, “Feminist Science,” and “Participatory Research” with Cathleen Armstead. Her current participatory research project explores “Family and Community Caring” in a Mexican-American community. Address for correspondence: Francesca M. Cancian, University of CA, Dept. of Sociology, Irvine, CA 92717.     

Participatory video analysis in disability research

This article sets out critical framing as an analytical approach in participatory video by which people investigate and analyze a topic through arts-based engagement, storyboarding, and collaborative editing. Participatory video as an action research method in self-advocacy has been discussed elsewhere. Here, the author examines critical framing and the role of generative themes in participatory analysis by describing a case study in which adults with developmental disabilities explored the dimensions of sexual health through participatory video. The author proposes that critical framing provides a more nuanced approach to participatory analysis. Credibility and trustworthiness with data triangulation and overall findings are also described.     

Participatory action research in local development: an opportunity for social work

Even if related to the seminal work of Kurt Lewin dating back to 1946, participatory approaches like action research still represent a relevant theoretical and practical set of methodologies for social work and research. In this article, after a brief overview of this methodological approach, the use of this paradigm in social work is explored, with a special focus on the development of symbolic and material resources within local communities. The processes and forms of involvement are examined with regard to the Italian experience of local development. An application of the participatory methodology stemming from a phenomenological approach proposed by Achille Ardigò, a well-known Italian sociologist, is employed. Following these premises, a procedural model enhancing the development of social groups is considered as the building block of community development. Short examples are provided. It is concluded that, in the process of local development, the symbolic and the immaterial dimensions need to be stimulated, as well as the material and the infrastructural ones. In order to achieve this, correct tools are needed.     

Synergistic development and participatory action research in a Nahuat community

This is a report of twenty years of participatory action research conducted by a team of Mexican urban professionals with community members in a Nahuat indigenous region at Sierra Norte de Puebla (Mexico). The article first outlines three main issues of Latin American participatory action research projects. The context and the unfolding of the case are presented through five stages highlighting the role of the team, its relationship with the community along the years, and the development of some of their joint activities. In the final pages the authors evaluate the case in relation to the issues raised in the first section and discuss what is important about this process. María Eugenia Sánchez is a sociologist and President and Founder of Proyecto de Animación y Desarrollo, Asociación Civil (PRADE A.C.), the nongovernmental organization living and working since 1973 in San Miguel Tzinacapan (Mexico). She is currently (1992–1993) a Fulbright Scholar at the Latin American Studies Program, Center for International Studies at Cornell University. He is currently (1992–1993) a Fulbright Scholar at the Latin American Studies Program, Center for International Studies at Cornell University. Address for correspondence: María Eugenia Sánchez or Eduardo Almeida, 190 Uris Hall, Latin American Studies Program, Cornell University, Ithaca, N.Y. 14853-7601. In Mexico: PRADE, A.C., Apartado Postal 6, Cuetzalan, Pue. 73560 Mexico.     

The participatory research approach in non‐Western countries: practical experiences from Central Asia and Zambia

This paper focuses on the application of the participatory research approach in non‐Western contexts. The aim is to provide critical insights into the participatory research discourse through an examination of its theory and practice based on our own experiences of using this approach in our doctoral research in five Central Asian countries and Zambia. Firstly, we summarise the published literature on the approach in both disability and development studies which are our academic disciplines. Secondly, we critically analyse some of the challenges we came across in applying participatory research in our doctoral studies in practice. By this we wish to contribute to making this approach more viable and to increase research participation by disabled persons in non‐Western contexts. Finally, based on our own experiences we give some suggestions for the use of the participatory research approach in non‐Western contexts.     

Participatory research: Three models and an analysis

This article examines three models of participatory research: what we call the parallel process model, the mutual engagement model, and the University of Central America (UCA) model. These models represent successively greater degrees of academic engagement with outside communities—from complementary, though not necessarily uncommitted, engagement by academic(s); to compromised full engagement between the academic(s) and the community; to institutional engagement between the entire university and the community. Our analysis outlines the tensions that may arise within participatory research between service and scholarship. We conclude that for participatory research to capture the attention and involvement of the broader discipline, it must provide a spectrum of theory, methods, and substance that sociologists find of importance independent of the participatory way in which such contributions are generated. This article is based on a paper presented at the 87th Annual Meeting of the American Sociological Association, D.L. Lawrence Convention Center, Pittsburgh, Pennsylvania, August 20–24, 1992.     

Why advocacy research?: Reflections on research and activism with immigrant women

This article discusses some of the common problems that arise in fomenting participatory research, and proposes that some form of advocacy research may be a more accessible alternative. The advocacy research alternative is distinguished from the pure model of participatory research by several factors: 1) the people being studied do not control the research; 2) advocacy research recognizes that it is not always possible to know in advance precisely what research findings will in fact be “useful” as a tool of social change; and 3) advocacy research is realized through political action, but not necessarily in the same community in which the research was conducted. I discuss advocacy research by relating some of my research experiences in a Mexican undocumented immigrant community in northern California, and how I utilized some of the research materials in an outreach program aimed at Latina immigrant domestic workers in Los Angeles.     

Making Connections: Community Organizing,Empowerment Planning,and Participatory Research in Participatory Evaluation

This article shows the intersections of participatory research, popular education, empowerment planning, and community organizing with participatory evaluation. It argues that a truly successful participatory evaluation involves participants in guiding and even conducting the research, doing a process of self- and program study, creating plans for change, and organizing themselves for implementing these plans. Next, the chapter shows how these elements played out in a participatory evaluation of a community organizing training and technical assistance project in Toledo, Ohio. The first year of the project was facilitated by participatory evaluation that helped identify early successes and problems so participants could make programmatic changes early in the process. The telling of the story also develops practices of participatory evaluation, including planning the evaluation, doing the research and adapting it to changing conditions, uncovering creative tensions, participatory validity checking, and linking the process to planning and action. The chapter concludes with some lessons for participatory evaluation practice.     

We did it together: a participatory action research study on poverty and disability

This article presents the perspective of both non-disabled and developmentally disabled people working together in a research project on poverty and disability. Our study used a participatory action research approach that challenges the norm of exclusion in the research process. Control of the research agenda has been inclusive and shared to varying degrees in accordance with the needs and desires of the members of an advisory committee of developmentally disabled people living with low income. We reflect on our process of working together according to four principles of participatory action research with disabled people. We discuss our successes and challenges enacting these principles in the hopes that future researchers can build upon our experience to be more inclusive of developmentally disabled people in their work.     

Advancing scientific knowledge through participatory action research

This paper aims to demonstrate the value of participatory action research (PAR) for advancing scientific knowledge as well as for solving practical problems. The article supports the argument through brief summaries of three PAR cases in industry: Norwegian shipping, Xerox Corporation, and the FAGOR group of the Mondragón cooperatives. While noting the practical gains achieved through PAR, the author concentrates particularly on the advances in substantive knowledge and theory that would have been unlikely to emerge out of more orthodox sociological research. The author suggests finally that wider use of participatory action research can have a stimulating effect upon the future development of sociology.     

The personal is political: a feminist reflection on a journey into participatory arts-based research with sex worker migrants in South Africa

ABSTRACT

This article offers a personal reflection of my journey into participatory arts-based research with sex work migrants in South Africa. It begins by sharing some background information of how my own experience as a migrant woman, and my layered (sometimes conflicted) identities, have continued to shape and influence much of my scholarly work, including my commitment to engaging in research that supports (or at least tries to support) social justice. Through this article, I offer an example of how the ‘personal is political’ is entwined in feminist values of research and engagement. Those who experience the issues under investigation must be considered equal partners in research processes. Collaborative forms of knowledge production can support social justice, particularly if efforts strive to shift the centre from which knowledge is traditionally generated and disseminated.     

Reflecting on participatory methodologies: research with parents of babies requiring neonatal care

This article concerns a study that examines the attitudes of parents, who have had babies in neonatal care, to sharing their babies’ routinely collected health data for research purposes. A participatory methodology was applied to the design of the study; a group of eleven parents who had all previously had babies in neonatal care were involved in designing a large-scale questionnaire survey. The article addresses the rationale for taking this approach, highlighting how it differs from the more common models of patient and public involvement. It presents the five themes that emerged from parents’ discussion in the course of engaging in the questionnaire design: legitimation, expertise, experiential knowledge, a different epistemology, power and control. How these shaped the design of the survey is employed in this article as a means of providing a commentary on the participatory research process itself. The article concludes by reflecting on whether participatory research can achieve its aims of promoting social justice when used for instrumental purposes such as the refinement of a data collection tool.     

“We don't want to talk about that”: Overcoming barriers to rural aging research and interventions on sensitive topics

Geographical, economic, social and cultural barriers to accessing services in rural areas are widely reported. Less widely discussed are dilemmas posed by individual and community reluctance to address sensitive health issues. This article, focusing on the highly sensitive area of mental health, and employing a participatory action approach, describes the natural history of a project, the Mental Health and Aging Initiative (MHAI) to enhance awareness of mental health issues in rural Kentucky-Appalachian communities and overcome the reluctance of individuals in these communities to seek assistance. Funded by the United States Department of Agriculture (USDA), MHAI involved an educational intervention to improve knowledge about mental health and aging in rural Appalachian counties. The need to overcome significant community reluctance to engage in discussion of mental health resulted in significant modification of the protocol. The intervention was grounded in recognition of four key aspects of the local situation: (1) the need to understand the sensitivity of mental health as an element of rural culture; (2) the critical role of local community leaders as points of entry, acceptance, and action; (3) the need to overcome social stigma and reframe the topic of mental health in a more positive light; and (4) the need for methodological innovation in developing an empowering educational action plan oriented toward community-wide long-term impact. The intervention model that emerged from these considerations was based on engaging community leaders, providing educational and technical resources, and nurturing the acceptance by individual rural residents of responsibility for monitoring community mental health. This motif became a central theme in a strategy designed to facilitate culture change and acceptance of mental health as a community concern. It involved active engagement of community representatives in defining and implementing an intervention consistent with participatory action research as a means of empowering rural residents in monitoring and addressing sensitive health care issues. Given that many issues in rural health are difficult to address because of such sensitivity, the approach described is considered to have application in other contexts.     

Rights to research: utilising the Convention on the Rights of Persons with Disabilities as an inclusive participatory action research tool

For those labelled disabled, disability rights are synonymous with human rights, not merely a sub-category. In this paper we consider disability rights in terms of the right of people labelled with learning difficulties to be actively involved in research. Examples from an inclusive participatory action research project undertaken in partnership with people labelled with learning difficulties demonstrate how the Convention on the Rights of Persons with Disabilities was operationalised using photo-voice to facilitate accessible research, analyse findings and promote social change.