The use of photovoice with people with intellectual disabilities: reflections,challenges and opportunities

Photovoice is part of the growing use of participatory research approaches with people with intellectual disabilities. In this paper we explore the process, opportunities and challenges associated with the use of photovoice with people with intellectual disabilities, illustrated through a research project entitled ‘This Is Me’. Photovoice requires researchers to share power and control in the research process and to tolerate uncertainty. Large investments in time and money are also required. These challenges, however, are outweighed by the benefits of the use of photovoice with people with intellectual disabilities. Photovoice creates a space where people with intellectual disabilities can meaningfully participate and exert control in the research process, and as such is an empowering experience. As a participatory research approach, photovoice is accessible and offers the opportunity for people with intellectual disabilities to develop new skills, confidence and experience inclusiveness in their own terms.     

Picture this: the use of participatory photographic research methods with people with learning disabilities

It has been argued that research that employs qualitative methods among vulnerable groups, such as people with learning disabilities, must reconcile the conflict between meeting recognized academic criteria, or measures of research 'strength', while at the same time appropriately and effectively representing the experiences and needs of vulnerable respondents. This article explores some of the tensions that lie within these objectives and looks at the use of more appropriate, participatory research methods, in this case photographic participation and elicitation techniques, as a way of including vulnerable respondents more effectively in social research studies.     

‘It's against our law,never mind anyone else's’: the Disability Discrimination Act 1995 and adults with learning disabilities

This study examines Part III of the Disability Discrimination Act 1995 (the provision of goods, services and facilities) in relation to adults with learning disabilities. The study had a participatory element in that self‐advocates co‐facilitated focus groups and joined the Research Advisory Group. The paper presents views of people with learning disabilities, garnered through focus groups and interviews, about the Act and about using services. Awareness of their rights was generally low, although activists were generally better informed. While usually offered reasonable service in shops, pubs and other facilities, people were sometimes treated unfairly. This could take three forms – being treated with a lack of courtesy and respect, failure to make reasonable adjustments and outright refusal to serve. People felt a strong sense of injustice when treated in these ways but the majority were unlikely to complain, although a few had challenged unfair treatment. The paper concludes with recommendations for policy and practice.     

Precarious lives and resistant possibilities: the labour of people with learning disabilities in times of austerity

This paper draws on feminist and queer philosophers? discussions of precarity and employment, too often absent from disability studies, to explore the working lives of people with learning disabilities in England in a time of austerity. Recent policy shifts from welfare to work welcome more disabled people into the job market. The reality is that disabled people remain under-represented in labour statistics and are conspicuously absent in cultures of work. We live in neoliberal-able times where we all find ourselves precarious. But, people with learning disabilities experience high levels of uncertainty in every aspect of their lives, including work, relationships and community living. Our research reveals an important analytical finding: that when people with learning disabilities are supported in imaginative and novel ways they are able to work effectively and cohesively participate in their local communities (even in a time of cuts to welfare). We conclude by acknowledging that we are witnessing a global politics of precarity and austerity. Our urgent task is to redress the unequal spread of precaritization across our society that risks leaving people with learning disabilities experiencing disproportionately perilous lives. One of our key recommendations is that it makes no economic sense (never mind moral sense) to pull funding from organisations that support people with intellectual disabilities to work.     

Community participation and inclusion: people with disabilities defining their place

Disability‐related public policy currently emphasises reducing the number of people experiencing exclusion from the spaces of the social and economic majority as being the pre‐eminent indicator of inclusion. Twenty‐eight adult, New Zealand vocational service users collaborated in a participatory action research project to develop shared understandings of community participation. Analysis of their narratives suggests that spatial indices of inclusion are quiet in potentially oppressive ways about the ways mainstream settings can be experienced by people with disabilities and quiet too about the alternative, less well sanctioned communities to which people with disabilities have always belonged. Participants identified five key attributes of place as important qualitative antecedents to a sense of community belonging. The potential of these attributes and other self‐authored approaches to inclusion are explored as ways that people with disabilities can support the policy objective of effecting a transformation from disabling to inclusive communities.     

Beginnings: participatory action research and adults with developmental disabilities

This paper discusses the emergence of Participatory Action Research (PAR), and its use with individuals with cognitive disabilities. A brief history of PAR is given, with a focus on its uses for empowerment and self-determination for persons with disabilities. Using literature-based standards for participatory, action and emancipatory research approaches, a 3-year research project with goals of increasing community participation by adults with developmental disabilities is described and evaluated. The "Transition into Community Life" project used an adapted form of the "Farmer-back-to-Farmer" PAR model (Rhoades & Booth, 1982), and the article discusses the successes and challenges of the model in a context quite different from how it was originally designed. The author describes lessons learned concerning the use of PAR with people with developmental disabilities. The article concludes with a brief discussion of the feasibility of PAR with individuals with cognitive challenges.     

Community reintegration for people with psychiatric disabilities: challenging systemic barriers to service provision and public policy through participatory action research

People with psychiatric disabilities represent a growing group within the population of nursing home residents in the USA. Despite a preference for living in community‐based settings, the availability of supportive services for community living is hindered by barriers at both the service provision and public policy levels. Therefore, understanding and responding to the community living and participation needs of people with psychiatric disabilities is a highly relevant area for action research. This paper discusses a participatory action research endeavor carried out in collaboration with key personnel at Centers for Independent Living who work to provide community reintegration services for individuals with psychiatric disabilities. The events of this 15 month partnership are extensively described, analyzed and discussed. Findings reflect the critical need for communication, dialogue and action to support people with psychiatric disabilities in the community.     

Beyond the “Usual Suspects”? Reimagining Democracy With Participatory Budgeting in Chicago

This article examines whether democratic innovations in the United States attract citizens who are typically underrepresented within existing political institutions. We focus on participatory budgeting, an intervention where residents decide how to allocate a particular pot of public money. Taking “PB Chicago” as our case study, we use survey and interview data to examine whether organizers realized their stated goal of involving residents other than the “usual suspects.” We find that residents who voted in PB Chicago were more often white, college educated, and from higher‐income households relative to both the local population and politically active residents in Chicago. While these residents were not necessarily the most active across other stages of the PB Chicago process, we find little evidence that lower socioeconomic status and minority residents were accessing the civic learning and empowerment gains associated with participatory forms of democracy. Outreach made the process more inclusive but was insufficient to overcome several important structural constraints. Of particular note, the needs and interests of less privileged residents were not met by the narrow capital works focus of PB Chicago. We suggest that when implemented under such conditions, participatory budgeting risks deepening existing political and social inequalities.     

Developing Independence: the experience of the Lawnmowers Theatre Company

This paper describes an action research project in which the Lawnmowers Theatre Company (a company of performers with learning disabilities) mounted drama clubs and a series of night clubs for people with learning disabilities. The objective of the project was to demonstrate that initiatives involving what might loosely be called 'drama' offer important opportunities for adult education and that night clubs for people with learning disabilities can be effective in providing new opportunities for social contact and also recognition for disability arts. All of these factors, it is argued, are important if people with learning disabilities are to be taken seriously as capable, interesting individuals with something useful to say. The project found high levels of participation and a range of skills acquisition.     

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.     

The role of self-advocacy in work for people with learning difficulties

This paper explores the relationship between self-advocacy and work for people with learning difficulties [1]. Explorations are based mainly on a participant observation study in which members of a self-advocacy group for people with learning difficulties included the researcher in their regular meetings. Discussions about work, most broadly defined as meaningful activity which makes a contribution to society, emerged as a critical preoccupation. We examine the importance of self-advocacy as a vehicle for people with learning difficulties who want to remove or circumvent barriers which surround their employment. Our research shows that understanding the role of self-advocacy in relation to work creates many development opportunities for both disabled employees and their prospective, or actual, employers. It is suggested that self-advocates can themselves achieve change in employers' attitudes by challenging oppressive images of people with learning difficulties in the workplace. It is hoped the paper will advance recognition of the importance of self-advocacy for maximising the participation of people with learning difficulties in work, and for acceptance of their status as workers.     

Parental Participation in Issues Concerning their Sons and Daughters with Learning Disabilities

'Participation' is much in vogue in current service parlance. This paper brings together literature on the participation of parents of people with learning disabilities. Research has focused mostly on participation during the school career, although increasing attention is being paid to participation at times of transition to adult services and moves from the family home. A number of issues surrounding participation are discussed: information, service philosophy, parental expectations for their sons and daughters and relative levels of parental and professional responsibility, aiming to illustrate the complexity of this concept and issues that exist for research and practice.     

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.     

Not Such an 'Ordinary' Relationship: the role of women support staff in relation to men with learning disabilities who have difficult sexual behaviour

This paper brings together some preliminary data on the management of men with learning disabilities who have unacceptable/abusive sexual behaviour patterns with a small pilot study which specifically explores the roles of women support workers in relation to difficult sexual behaviour. A specific focus on the behaviour of men with learning disabilities is justified because of consistent evidence that it is men, rather than women, service users who challenge services in this way. The studies explore with staff the boundaries of what is considered acceptable sexual behaviour and how breaches of these are responded to within services. One issue which we have chosen to highlight is the frequent exposure of women staff to the men's sexual behaviour, sometimes precipitated by the unusual relationship that exists between the two parties, and exacerbated by the lack of clear management guidance within the gendered hierarchies found in service agencies.     

Cripping sexualities: An analytic review of theoretical and empirical writing on the intersection of disabilities and sexualities

This paper provides a review of some of the literature addressing the juncture of disabilities and sexualities and invites sociologists to build on this work and take part in this important intersectional field. First, I discuss the central relevance of an intersectional lens for making sense of the unique experiences of queer people with disabilities who are located at the crossroads of various stratified systems. Then, I discuss some of the many unique challenges that queer disabled people face when exploring their sexuality, establishing relationships, and remaining sexual. The invisibility, marginalization, and discrimination of queer people with disabilities in both queer and disability communities are the focus on the third section. The fourth section speaks to current theoretical dialogues between disability studies and queer theory that have illuminated new pathways for theorizing the intersection of disabilities and sexualities, “cripping” sociological theories, and reimagining disability within sociology. As I demonstrate, this literature is growing; however, myriad exciting opportunities for empirical and theoretical sociological exploration remain and I will conclude with a discussion of possible directions for future research.     

‘People with learning disabilities need a commissioner and a legal charter of rights’ – no they do not!

Since the UK Winterbourne View scandal, there have been a number of reports and responses recommending what should be done to ensure a similar scandal does not happen again. Two ideas have emerged which suggest that people with learning disabilities need a legal charter of rights and a commissioner to make a difference in their lives. This article, however, argues that although it is right that issues affecting people with learning disabilities are at the heart of discussion and debate, this does not take into account the complex, flexible and multiple identities of people with learning disabilities, and their knowledge, experiences and skills. This would be more beneficial in understanding the lives of people with the label of learning disabilities than a commissioner or a charter.     

Rethinking the European countryside—can we learn from the South?

A new paradigm of multi-dimensional rural development has emerged which advocates a broader conception of the rurality where the rural is no longer the monopoly of the farmer. This new, broader paradigm needs to be reflected in the methodology of social scientific research, both generic and applied. In this paper we are primarily concerned with transfer of research methodologies utilised in development studies in the South to explore their usefulness for rethinking the European countryside. Such a transfer of methodology may be helpful, because integrated rural development can build on a long legacy in the South, while it has only recently been advocated in the EU context. The paper reflects upon the application of two such analytical concepts originating from development studies, which we have applied for research on the rural geographies in the European countryside, namely Sen's livelihood capabilities approach and Chambers’ concept of participatory rural appraisal (PRA). Having the sustainable livelihoods approach as overall framework, both methodologies are qualitative in nature and address people's survival strategies and livelihood practices with a focus on micro-level analysis at individual, household (Sen) and community level (PRA), while reflecting their embeddedness in wider social, political and economic structures. Our comparative studies suggest that the prospects for bottom-up development, as orchestrated by PRA or similar approaches, is constrained by structural factors, which define the boundaries for local development. The capabilities approach is useful to detect the capabilities to act and be within which bottom-up approaches may take their—though limited—role in rural development.     

Comparing transition expectations of young people with moderate learning disabilities with other vulnerable youth and with their non-disabled counterparts

This article uses data obtained from a study that examined transition experiences of young people with moderate learning disabilities. A comparison is made between those experiences and the experiences of both other vulnerable young people and non-disabled youth. It was found that non-disabled youth experience extended transitions with events that signify adult status taking place well into young people's 20s. On the other hand, vulnerable youth transitions are often (out of necessity) rushed, with young people having to take on responsibility beyond their years. The results of the study demonstrate that for young people with moderate learning disabilities the experiences of transition more closely mirror those of other vulnerable youth than they do the non-disabled population.     

Regranting identity to the outgraced – narratives of persons with learning disabilities: methodological considerations

Good research should be relevant and useful, it may even be enlightening or symbolic, but it can also be emancipatory. Qualitative research can be useful in challenging structures, policies and practices that disempower and marginalize segments of the population. However, could it be that the empowerment of the participant ends where the weakness of the researcher begins? In qualitative studies the researcher seems to have a number of favourite interviews. In a study on the relational and sexual experiences of 46 people with learning disabilities, 12 interviews were withdrawn from the general data on the basis of lack of relevance. It is important to re‐examine why the voice of some people fell out of the in‐depth analysis and whether this was justified. In this article some methodological opportunities and pitfalls to re‐grant identity to these silenced narratives are considered and discussed.     

International Ethical Safeguards: genetics and people with learning disabilities

This paper discusses the ethical issues and international standards relating to genetic research on people with learning disabilities. Research protocols must acknowledge the people who are subjects of such research and must reflect emerging disability philosophies. This research provides a brief historical context and considers five issues of fundamental importance to people with learning disabilities through a discussion of participation in the research design, independent advocacy, justice, non-discrimination and autonomy. These concerns have been investigated in England and abroad, and it is therefore valuable to undertake a review of the legal and ethical context of genetic research for vulnerable people who may be deemed unable to provide consent.