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.     

“I was Excited by the Idea of a Project that Focuses on those Unasked Questions” Co‐Producing Disability Research with Disabled Young People

In this article, we detail the politics and practicalities of co‐produced disability research with disabled young people with life‐limiting and life‐threatening impairments. We centre an ESRC‐funded arts‐informed co‐produced research project that has brought together a Co‐Researcher Collective of disabled young people. Co‐production is an established approach; however, our co‐researchers have led us to develop inclusive research practices that engage with online social research methods in innovative ways. As we detail our experiences, we aim to encourage disability studies researchers and others to adopt virtual environments when researching with and for the lives of disabled people.     

Epistemological journeys in participatory action research: alliances between community psychology and disability studies

This paper seeks to explore emancipatory disability research possibilities through the use of participatory action research and the cross-fertilisation of ideas between British disability studies (DS) and community psychology (CP). First, we consider the psychology in CP and suggest that it is far removed from mainstream psychology's pathological vision of disabled people. Second, we draw on Burrell and Morgan's (1979) model of paradigms to interrogate research practice in DS and CP. Third, we compare and contrast research narratives from DS and CP through reference to some examples of our own research. We argue that CP pays particular attention to the development of community selves and cultural identities within the participatory action research process: which we feel to be a key concern for the development of an emancipatory DS. We conclude that recognising the radical humanist element of participatory action research (PAR) permits us to navigate an enabling journey for disability research.     

What makes a good self-advocacy project? The added value of co-production

Abstract

This article describes how two self-advocates worked with two academics and others to produce a toolkit to help self-advocacy groups run better projects. We begin by explaining why this research needed doing and how we carried out the research. We then talk about what co-produced research means to us and how we think it is different from participatory or inclusive research. We discuss whether the research and this article were co-produced. We finish by looking at why we think co-production added value to this research. Our aim with this article is to help activists and academics work together to achieve two things: good-quality research findings; and big differences to disabled people’s lives.     

Physically disabled women and sexual identity: a PhotoVoice study

The issue of sexuality for young disabled women is not often talked about in society. Our study aimed to explore four young physically disabled women’s experiences and perspectives regarding sexuality and disability. We used PhotoVoice, a participatory action research method which uses photographs, to capture and convey our participants’ concerns. Through their photographs they showed that everyday interactions with others, particularly strangers or meeting people for the first time, were made difficult by how they were always seen as having a disability. Other parts of their identity were not recognised. The change the young women wanted was for people to see them as young women and not just as disabled.     

Access to education in Africa: responding to the United Nations Convention on the Rights of Persons with Disabilities

Article 24 of the United Nations Convention on the Rights of Persons with Disabilities mandates that disabled people should have full rights to education in inclusive settings. However, to ensure that educational polices and settings are designed to meet this criterion seems challenging to African countries that have ratified this Convention. This article arises from the 2nd African Network of Evidence-to-Action on Disability Symposium. This fluid network was established to address the gap between research and practice in the region. The article reports proceedings and the emerging themes from the Education, Training and Work Commission; one of the six commissions of this Symposium, focusing specifically on the education aspect. It also challenges various stakeholders to move from evidence to action to ensure the educational rights of disabled people in inclusive settings.     

Being an inclusive researcher: seeking questions,raising answers

Abstract

In this article, I reflect on three incidents that occurred in my inclusive research work. As a conceptual framework, I use Bourdieu’s call for a reflexive sociology. My reflection is informed by the principles of the disabled people’s movement, especially giving primacy to the experiences and voice of disabled people. It is also informed by the strong link between the disabled people’s movement and disability studies, which requires academics (including non-disabled ones like myself) to be attentive to their activist role. Making sure that this role is carried out effectively, I argue, entails considering the various factors that make our work possible, and being attentive to the impact of our work. It also entails asking questions, of ourselves and others, and being especially attentive to questions that would go unasked unless we stop to reflect about our work, and the possible answers that these reflections can lead to.     

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.     

Participatory action research and researcher’s responsibilities: an experience with an Indigenous community

This paper seeks to explore the relational participatory action research (PAR) frameworks that have been developed to allow non-Indigenous researchers, along with Indigenous co-researcher participants, to learn and honour Indigenous stories. Specifically, in the context of PAR research in the Chittagong Hill Tracts of Bangladesh, we outline: (a) potential challenges between Indigenous research paradigms and Western research paradigms, (b) the situation of the non-Indigenous researcher in relation to the Indigenous community, (c) challenges associated with the non-Indigenous researcher’s selection of a research site, (d) collaboration throughout the research process and (e) the processes of developing and maintaining responsibilities. The aim is not to offer simple answers to such challenges, but to highlight the manner in which such processes can be addressed. This research may provide practical insight for future non-Indigenous researchers working with Indigenous communities through a participatory sharing process with Indigenous co-researcher participants, Elders, leaders, knowledge-holders and youths.     

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.     

Towards an agenda for disability research in Europe: learning from disabled people’s organisations

This paper addresses the challenges of building capacity for collaborative participatory research with disabled people’s organisations in European countries. The paper presents initial findings from the project ‘European Research Agendas for Disability Equality’ (EuRADE), which seeks to build the capacity of civil society organisations to participate in future research collaborations in partnership with academic institutions. The findings draw on survey data identifying the research capacity, needs and priorities of 68 organisations in 25 countries and focuses, in particular, on responses from national or European level representative organisations of disabled people. The findings demonstrate a high degree of motivation and readiness for collaboration in academic research but raise concerns about the readiness of academic institutions to engage disabled people as equal partners within social model and rights‐based approaches. Respondent organisations identified a wide range of research needs that raise challenges for collaborative responses from the academic community. In this way, the findings provide a basis for developing user‐led agendas for European funded research within the emancipatory paradigm, and indentify important opportunities for new international research collaborations between activists and academics.     

Using participatory and creative methods to facilitate emancipatory research with people facing multiple disadvantage: a role for health and care professionals

Participatory and creative research methods are a powerful tool for enabling active engagement in the research process of marginalised people. It can be particularly hard for people living with multiple disadvantage, such as disabled people from ethnic minority backgrounds, to access research projects that are relevant to their lived experience. This article argues that creative and participatory methods facilitate the co-researchers’ engagement in the research process, which thus becomes more empowering. Exploring the congruence of these methods with their professional ethos, health and care professionals can use their skills to develop them further. Both theory and practice examples are presented.     

Personal and Political: A Feminist Perspective on Researching Physical Disability

Feminist theory and methodology have much to offer in understanding how disability research has been experienced as alienated research by disabled people. However, feminist research has failed to apply its principles to disability and disabled women's subjective reality has found no place in mainstream feminist work. The paper identifies the challenges for feminism in addressing the interests and reality of disabled women, asserting that it is not helpful to focus on 'double disadvantage'. Disability research itself has much to learn from feminist methodology, in particular the principle of making the personal political. The role of non-disabled researchers as allies of disabled people is discussed, and the importance of research which turns the spotlight on the way in which non-disabled society oppresses disabled people. Finally, it is asserted that disability research and politics are of general relevance because the experience of disability is an integral part of a society characterised by fundamental inequalities and ideologies which divide people against each other.     

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.     

On the Road to Damascus: First Steps towards Changing the Relations of Disability Research Production

This paper distinguishes between participatory and emancipatory research, and discusses how both differ from other research practice. A further distinction is made between material and social relations of disability research production. It is argued that, although there are significant constraints imposed by the material relations of research production, genuine progress can still be made in changing the social relations of disability research. Based on the experience of doing research commissioned by organisations of disabled people and other work carried out within a framework of 'user's perspectives' on services and policy, the discussion focuses on the lessons we have learnt-and those we still need to learn-about how to change the relations of research production. Consultation between researchers and disabled people, subjecting research to critical scrutiny, and making researchers accountable to disabled people are suggested as key issues in the development of participatory research.     

Young People Leaving Care: Participatory Research to Improve Child Welfare Practices and the Rights of Children and Young People

Abstract

This paper discusses participatory research with young people who are leaving public care in Finland to begin independent lives. The aim of the research, organised by SOS Children's Villages International, was to bring about change in alternative care arrangements, particularly those involving young people's transition to independence. The project used a participatory research design based on employing care-leaving peers as co-researchers. This paper adheres to the methodological principles of empowerment in analysing the personal experiences of young people leaving alternative care with the goal of informing good practice. The findings suggest that the peer research method can be an effective means of empowering young people to develop research skills and to be involved in knowledge production, as well as serving as a means of promoting improved services for “care-leavers”, those young people who are leaving either foster care or institutional care. The participatory and peer research method challenges the traditional understandings of expertise and knowledge production. Although the hierarchy between adult researchers and young people as co-researchers is still evident, the method provides possibilities for better understanding the social- and health-service systems and their challenges and pitfalls from a user's perspective.     

Community Participation Reconsidered

ABSTRACT

This paper describes the process of planning, developing, and implementing a community-based project with Hmong women in a large Midwestern city. Combining action and research to forge relationships, identify common goals and garner resources, the Hmong Women's Project applied principles of both feminist and participatory action research (PAR). In light of the successes and challenges of this ongoing project, we critically evaluate the oft-encouraged goal of “maximum community participation” in PAR projects by questioning common definitions of “community” and “participation.” We argue that the parameters of what constitutes a “community” and what counts for “participation” are inherently unstable, requiring constant negotiation of ideas, values, identities and interests among all who participate in a PAR project.     

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.     

Laughing matters: humour as advocacy in education for the disabled

Humour is an advocacy tool used by women organisers in Sāmoa, an Independent State in the Pacific. Examining the use of humour (jokes, sarcasm, banter, and clowning) in social action research reveal creative ways that advocates and activists can challenge systems of normalcy. This paper examines humour as an informal conversational and non-confrontational strategy used by (non)disabled Indigenous women to support the creation of schools for disabled students. Thematic analysis of the data shows that the women’s use of humour supports their agenda of transforming exclusive structures in education and policy. Using humour as an organising strategy also shifts mainstream thinking about disabled people as easy targets of offensive and degrading humour. The paper explores humour as an organising strategy that provides new supports into inclusive spaces for the education of disabled people in the global South.