The Ethics of Research With Men who Have Learning Disabilities and Abusive Sexual Behaviour: a minefield in a vacuum

In the wake of the recent awareness of the sexual abuse of people with learning disabilities is the recognition that a small number of men with learning disabilities are themselves sexually abusing. The need to understand the men's behaviour and provide effective responses is pressing yet the search for an ethical course of enquiry appears illusory. The two conflicting dilemmas which make this task so difficult are whether the men's learning disabilities preclude their giving informed consent to the research process, and/or whether men who are sexually abusing have lost some rights to exclude themselves from research which is intended to prevent further abuse. This paper explores in depth these dilemmas and describes the authors' attempts to resolve them as they attempted to devise a protocol for consent to involvement in a qualitative study of men with learning disabilities who sexually abuse. Issues raised in this particular context have relevance to many other issues in learning disability services where robust ethical debate is needed, but often glossed over.     

Research methods with disabled populations

Although social work and related fields need more research involving people with disabilities, such studies can pose special challenges due to lack of understanding of disability issues, the disempowerment and invisibility of many who are disabled, and communication barriers. This article discusses ways of eliminating bias and maintaining ethical safeguards when designing and conducting research on people with disabilities. Participatory action research, which engages those studied in the design and conduct of research, is discussed as a model, as is the use of qualitative methods. Recent methodological innovations in survey research with deaf populations are also described and illustrated.     

Research Methods with Disabled Populations

Abstract

Although social work and related fields need more research involving people with disabilities, such studies can pose special challenges due to lack of understanding of disability issues, the disempowerment and invisibility of many who are disabled, and communication barriers. This article discusses ways of eliminating bias and maintaining ethical safeguards when designing and conducting research on people with disabilities. Participatory action research, which engages those studied in the design and conduct of research, is discussed as a model, as is the use of qualitative methods. Recent methodological innovations in survey research with deaf populations are also described and illustrated.     

Trying to Get it Right: undertaking research involving people with learning difficulties

This paper uses criteria defined by Zarb to describe research undertaken with people with learning difficulties, in the context of an emerging emancipatory paradigm. First, the paper addresses the question: Who controlled the research and what it was about? It considers consultation with people with learning difficulties, the influence of public service organisations and the ethical committee. Secondly, the paper evaluates how far disabled people were involved in the research process, and discusses issues relating to the inclusion of people with learning difficulties as respondents, obtaining informed consent and the involvement of carers in interviews. Finally, the paper discusses the questions: What opportunities existed for disabled people to criticise the research and influence its future direction? What happened to the products of the research? The role of a pilot study, opportunities to provide feedback and dissemination strategies are described.     

How Far to Gay? The Politics of HIV in Learning Disability

This paper examines work in sexual health and HIV prevention in services for people with learning disabilities from a political stance associated with the rehomosexualisation of AIDS in Britain. Arguments are made for the re-homosexualisation of AIDS in services for people with learning disabilities, based on evidence of where HIV risk lies in relation to men with learning disabilities who have sex with men. This provides an opportunity to critically review approaches and responses to HIV risk assessment and risk management in services for people with learning disabilities, with reference to the assumptions which underpin practice and issues of sexual identity. The case is made for a more radical sexual politics in learning disability to help combat HIV and to provide more realistic approaches to service commissioning and safer sex education. Pointers for service development and key areas where the re-homosexualisation of AIDS can inform practice and resource development are also provided.     

Public Research, Private Concerns: ethical issues in the use of open-ended interviews with people who have learning difficulties

This paper is an exploration of the ethical dilemmas in open-ended interview research with people with learning difficulties. We address the possibility that research which gives voice to the experience of abuse, from the viewpoint of the victim, can itself be abusive. Such research is justified in terms of empowering, illuminating and disseminating the meaning that participants give to their lives. Yet every stage of the process raises complex ethical issues when research participants are drawn from vulnerable and powerless groups in society, and the focus for investigation can be deemed private. As a vehicle for our exploration, we reflect on our ethical dilemmas in researching the story of a young woman who has learning difficulties and has been the victim of various forms of abuse. We argue that ethical dilemmas cannot be overcome solely by Ethical Codes or even predetermined 'good practice'. They are integral to the whole research process and necessitate continuous explicit examination of decision making processes within research.     

Toward a Holistic View of Health and Health Promotion in Social Work with People with Disabilities

Abstract

The individual medically oriented model of disability suggests that people with disabilities seldom achieve health and wellness because of their impairments and disabilities. This paper provides an alternative to the tendency in social work to focus on the medicalization of disability without a due consideration of the social context. It draws insights from the social model that asserts disability is a form of social restriction encountered by people with disabilities and that social barriers of disability must be removed through collective action. Also, this model posits that people with disabilities can be healthy if the barriers preventing good health are removed. However, medical aspects of a person with a disability should not be forsaken entirely. Therefore, this article proposes a holistic view that converges insights of the individual and social models toward a better understanding of health issues for people with disabilities. It shows the implications for social work that follow from the convergence.     

‘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.     

Navigating the ethical maze in disability research: ethical contestations in an African context

Despite changes in how disability is viewed, ethical requirements for disability research have hardly changed. Some ethical clearance procedures, processes and practices still consider persons with disabilities as not able, creating unease among researchers and research participants with disabilities themselves. This paper considers five ethical contestations arising from research in the area of disability in an African context: positionality, vulnerability, signed consent, anonymity, and research committee composition. We argue that ethical requirements in practice are still largely based on a medical model of disability and propose that culturally sensitive social and human rights models should influence disability research ethics.     

Recruitment and consent of adults with intellectual disabilities in a classic grounded theory research study: ethical and methodological considerations

Researchers are required to provide opportunities for people with intellectual disabilities to be included in research which affects their lives. This paper reports on one research study inclusive of 12 adults with intellectual disabilities. Ethical and methodological realities of recruiting research participants and obtaining informed consent while enlisting a classic grounded theory methodology are discussed. The findings of this paper focus on building and maintaining trusting relationships with relevant gatekeepers and engaging in reasonable accommodations to support decision-making for and with adults with intellectual disabilities. This paper contributes to an understanding of how to apply for ethical approval, negotiate access to potential participants, enlist reasonable accommodations and obtain informed consent in the context of the methodological strictures of classic grounded theory methodology. Research projects need to be carefully planned making space for the development of empathic relationships with both the potential participants and also with the structures and services supports.     

‘Angry,when things don’t go my own way’: what it means to be gay with learning disabilities

This article presents six poems constructed by George, a gay man with learning disabilities, who took part in an arts-based project for men with learning disabilities. The poetry reflects upon George’s feelings relating to his sexual desires, his longing for a loving relationship and his frustration and anger at not having control over his life. Like other people who are gay with learning disabilities, George regularly encountered stigma because of his disability and Lesbian, Gay, Bisexual, Transgender and Queer status, limiting the development of meaningful relationships, and increasing the resentment and anger George felt about life. Thus, barriers remain for people with learning disabilities who are gay. With this in mind, the aim of presenting the poems in this article is to develop further understandings of what it means to be a gay person with learning disabilities using poetry in an arts-based project.     

Citizens with learning disabilities and the right to vote

This paper asks, in the context of recent legislative changes, what can be done to support more citizens in England and Wales with learning disabilities to vote in national elections? This issue is addressed through (i) a review of recent disability access campaigns that have reported discrimination against, and the under‐representation of, adults with disabilities in UK elections; (ii) a review of recent research undertaken in the USA into the assessment of competence to vote and research undertaken in England that conclusively documents the under‐representation of voters with learning disabilities in the 2005 general election. It is proposed that a ‘functional approach’ to developing an individual's capacity to vote could help to fulfil Article 29 of the United Nations' Convention on the rights of persons with disabilities that gives all people the same political rights.     

Community-based arts research for people with learning disabilities: challenging misconceptions about learning disabilities

This article presents some of the community-based artwork of a group of men with learning disabilities, who aimed to challenge some of the misconceptions associated with learning disabilities. People with learning disabilities regularly face many forms of direct and indirect stigma. The consequences of such negative perceptions may affect individuals’ social relationships and ensure that barriers are strengthened which prevent their full inclusion. The men in this project used a series of visual and creative methods to challenge some of these misconceptions by telling stories through art, demonstrating skill through photography, using poetry to talk about sexual identity and improvising drama and filmmaking to challenge stigma, and through sculpture expressed their voices. Thus, by doing so, they were able to challenge some of the stigma associated with learning disabilities, indicating that community-based arts research is a valuable way in which to promote the voices of people with learning disabilities.     

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.     

Transition from school for youths with a disability: issues and challenges

Australian research has demonstrated that students with a disability are more likely to remain out of the full‐time workforce. These research findings have been the catalyst for a call for a comprehensive career development and transition planning approach for all students with disabilities in schools as well as for employers to rethink the role of people with disabilities in the workforce. In the Australian context the transition from school for individuals with a disability is complicated by a disparate and fragmented group of service agencies providing a range of services, including employment, supported accommodation, recreation and leisure pursuits, as well as training and placement, along with, at times, a deep‐seated prejudice towards people with disabilities in the market place. This paper reviews a number of issues and challenges confronting individuals with a disability making the transition from school to the post‐school environment.     

The meaning of workplace discrimination for women with disabilities

Studies have found that persons with disabilities who are also members of other minority groups or women encounter dual discrimination. This paper describes how women with disabilities who are in the workplace experience discrimination. In order to determine whether discrimination was a viable issue, theoretical contexts of feminist theory, disability theory, and attribution theory were examined as well as literature examining employment of women with disabilities. For this study, three women with various disabilities were interviewed regarding the effect of their disability on their typical workday, their employment and job seeking history, and employment opportunities. Qualitative data were also provided through mapping by the participants and pictorial data of worksites. Data were grouped into themes of pre-conceived notions of others, attitudes of others, accommodation issues, inclusion issues and exploitation issues. From these themes definitions of discrimination, nondiscrimination in the workplace were developed. Conclusions include the need for more research on workplace experiences of other or more specific populations that experience discrimination as well as the need for ethical reflection on the part of the researcher regarding vulnerable populations.     

Listening to Young People with Learning Disabilities Who Have Experienced,or Are at Risk of,Child Sexual Exploitation in the UK

This paper reports on a UK study which examined the identification of, and support for young people with learning disabilities who experience, or are at risk of, child sexual exploitation (CSE). CSE has received considerable attention in the UK, with evidence suggesting an increased risk for young people with learning disabilities. However, no study has specifically focused on this group, and their voices remain largely unheard. In‐depth interviews with 27 young people with learning disabilities were undertaken to explore how to meet their needs. This paper presents the young people's voices and identifies areas for improvements in policy and practice.     

Professional Ideology and Learning Disability: an analysis of internal conflict

Normalisation is the guiding principle for professionals who work with people with learning disabilities. However, professionals hold varying degrees of adherence to this prevailing orthodoxy. In addition, some professionals openly dispute its merits and adopt a more paternalistic perspective of people with learning disabilities. Consequently, their views are more similar to the parents of people with learning disabilities than to their professional colleagues. Based on ideological differences, these contradictory views create tension and potential conflict between professionals. This paper explores the ideological differences between professionals who follow the prevailing orthodoxy, identified in the study as 'normalisers', and professionals who adhere to a superseded ideology, identified as 'paternalists'. Similar to the problematic relationship between parents and professionals, a solution to the internal conflict of professionals may also be found in seeking a shared ideology of care.     

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.     

The Learning Experience of Students with Disabilities in Higher Education. A case study of a UK university

This paper summarises the results of an investigation into the social and learning experiences of students with disabilities in a UK University. The students' experiences were evaluated in three broad areas: with respect to the categories used by the Higher Education Council to examine the quality of the learning experience for all students in higher education; against the issues conventionally included in studies and policy developments for independent living for people with disabilities; and in relation to the impact coming to university has on the lives of students with disabilities. The paper highlights the issues of central concern to students with disabilities in the University and draws some conclusions with policy implications from a discussion of student perception of services, the practical constraints facing the institution, and the social values which underpin the framework of support for students with disabilities in Higher Education in England and Wales.