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.     

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.     

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.     

The Researched Opinions on Research: disabled people and disability research

Thirty-five disabled people with a range of physical, sensory and mental impairments were interviewed about (1) their experiences of research; (2) their general opinions concerning research; (3) whether they thought research had served/was serving disabled people well; (4) how research on disability should be conducted; (5) who should conduct research on disability; and, finally, (6) what they would like to be researched. In this paper, the results of aspects two to five are reported. It was found that the opinions of disabled people mirror quite strongly the recent arguments forwarded by disabled academics concerning the need for emancipatory and empowering research strategies. In particular, the respondents articulated a need for inclusive, action-based research strategies, where disabled people are involved as consultants and partners not just as research subjects, There were few arguments, however, for an exclusive approach, where disability research would be conducted solely by researchers who were themselves disabled.     

“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.     

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.     

In defence of psychology: a reply to Goodley and Lawthom (2005)

Goodley & Lawthom discussed the role of a community psychology approach in conducting emancipatory disability research. While their aims are entirely laudable, they portrayed mainstream psychology as 'pathologising, voyeuristic, individualising, [and] impairment-obsessed'. This paper presents a reply to Goodley and Lawthom's somewhat outdated arguments for the dismissal of mainstream psychology and argues that the focus on a single 'best' method of researching disability does not serve the best interests of disabled people within society. It is argued that to create a 'new' psychology distinct from the 'mainstream' is unnecessary, undesirable and counter-productive. Mainstream psychology has much to offer disabled people and to dismiss it is to throw the baby out with the bathwater.     

Qualitative Research: Valuable or Irrelevant?

This paper evaluates qualitative research methods in relation to the emancipatory research model. It identifies the main reasons why researchers opt for qualitative research, describes the principal data collection techniques used by them, and discusses some of the problems associated with these procedures. Drawing on insights gained from doing qualitative research in day centres for disabled young adults, I argue that these methodologies are fundamental to the emancipatory research paradigm; but their relevance can only be determined by researchers' willingness to challenge the institutions which control disability research production.     

Changing the Social Relations of Research Production?

This paper will argue that research on disability has had little influence on policy and made no contribution to improving the lives of disabled people. In fact, up to now the process of research production has been alienating both for disabled people and for researchers themselves. Neither positivist nor interpretive paradigms are immune from the characterisation of research as alienation, and hence it is suggested that the only way to produce unalienated research is to change the social relations of research production. This change will require the development of an emancipatory research paradigm and both the development of and agenda for such a paradigm are briefly considered.     

The Articulation of Theory and Practice: critique and resistance in Aotearoa New Zealand

In his latest book, Understanding Disability: from theory to practice (1996), Michael Oliver (p. 111) notes the 'globalisation' of disability related issues and the absence of any satisfactory comparative studies in disability policy across the globe. This paper can be seen as laying the ground work for such a study by reviewing the theorisation of disability and its practical consequence in the articulation, development and implementation of disability policy in Aotearoa New Zealand. It will describe some current examples of policies for disabled people and provides an analysis of current debates. The paper explores the emancipatory potential of current disability theorising by analysing strategies adopted by disabled people as a response to recent policy developments in the health and disability field in Aotearoa New Zealand.     

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.     

Normalisation, Emancipatory Research and Inclusive Research in Learning Disability

In this article I set out to trace the influence of two major sets of ideas: normalisation/srv, and the social model of disability on inclusive research in learning disability. The argument is that normalisation set the agenda for learning disability research for two or more decades. Inclusive researchers continue to apply normalisation thinking to work with people with learning difficulties, particularly in assuming the role of advocate - offering people the opportunity to take on valued social roles and assuming responsibility for promoting positive images. Latterly, a number of researchers have tried to rise to the challenges posed by emancipatory research, particularly in attempting to find ways to put people with learning difficulties in control. This illustrates the influence of thinking emanating from disability studies. However, the paper shows that whilst some ideas from emancipatory research have been applied in learning disability, there are debates in the disability literature that have not been addressed in learning disability research to date. The result is that inclusive research in learning disability is in danger of being marginalised, both in the context of disability studies and in the context of the broad sweep of learning disability research.     

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.     

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.     

The impact of involuntary job loss on those disabled by society: a pilot study to encourage effective participation

Over half of the people who become disabled whilst employed are thought to be pressured into leaving their job. This study investigates the experience of involuntary retirement/redundancy due to disability. Three researchers who had all experienced such involuntary job loss were trained to conduct the research. Semi-structured interviews were designed and conducted by disabled researchers. The training of the researchers enabled them to successfully conduct a research project. The results of the project show the impact of involuntary job loss due to disability to be considerable. This study would suggest that government reforms to create new opportunities for disabled people of a working age are well overdue. Although there were some problems experienced with the amount of training required and the lack of objectivity, training disabled researchers to conduct research proved to be a valuable experience for both the researchers and the facilitators.     

Negotiating Psycho-emotional Dimensions of Disability and their Influence on Identity Constructions

This paper uses Foucault's concept of 'technologies of power' to explore the ways in which the psycho-emotional dimensions of disability are created and maintained within society. The manner in which gaze and self-surveillance operate on the bodies of people with impairments to leave them feeling worthless, unattractive and stressed is considered, and the effects of impairment on these processes are also discussed. However disabled people are not simply passive victims of this form of emotional disablism--many exercise agency and resist. The manner in which disabled people resist the negative stereotypes is described and the process of 'coming out' as a disabled person is offered as an example of a 'technology of the self'. This interplay of dominating and emancipatory forces is shown to contribute to a disability identity, which is fluid and which better represents the diversity of the disability experiences of disabled people than an essentialist disability identity.     

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.     

In defence of disability studies: a response to Forshaw (2007) 'In defence of psychology: a reply to Goodley and Lawthom (2005)'

We welcome Forshaw's reply to our paper because it opens up debate about psychology and its relationship with the development of an emancipatory disability studies. In our paper we aimed to: (1) raise possibilities for disability studies researchers' engagement with psychology (rather than psychology colonizing disability studies); (2) trace some of the epistemological journeys we underwent in carrying out disability research and community psychology research; (3) consider these possibilities and journeys in relation to previous literature on emancipatory disability research. Forshaw's reply appears to ignore aims (2) and (3) and instead focuses on the ways in which we (mis)represent psychology. He suggests that we: present an inaccurate account of qualitative research in contemporary psychology; make a divisive argument for a 'breakaway group' of community psychologists; epistemologically contradict ourselves because of our concern with 'reality' and social constructionism; argue for only adopting participatory action research; not least, adopt 'simplistic' and 'outdated' views of psychology. We will respond to these criticisms.     

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.     

Disability Research by Disabled and Non‐Disabled People: Towards a Relational Methodology of Research Production

This paper explores some of the problems and opportunities that may derive from the development of working relationships between disabled and non‐disabled researchers. First a number of key barriers that face disabled researchers from the outset of research are sketched out. However, these barriers are not dwelt on as they have been documented and challenged well by others. Rather, in seeking to identify good research practice that can challenge such barriers, it is suggested that enabling modes of research production may often be uncovered through a careful examination of the working relationships between members of research teams. This approach is illustrated through a discussion of a range of relational issues that have impacted upon the authors’ own research partnership: (i) Relating in research: Tackling fears and issues around self‐disclosure; (ii)Psychoanalytic sensitivity: Privileging ontological experience and reflexivity; (iii) Towards a feminist ethics of care: Challenging methodological individualism; and (iv) Interdependence in research: towards enriched analysis. In terms of advancing an agenda for inclusive disability research, it is believed that making explicit the complexity of disabled/non‐disabled research relationships like this is one practical way in which general assumptions of a binary disabled/non‐disabled split may be challenged, whilst simultaneously recognizing that equitable working partnerships can only derive from the equal valuing of difference.