'Talking to Top People': Some Issues Relating to the Citizenship of People with Learning Difficulties

The author discusses the citizenship of people with learning difficulties (mental handicap). Whilst there is evidence that people with learning difficulties can develop the skills required of 'active citizens', there are many socio-structural and ideological barriers to the exercise of full citizenship rights by people with learning difficulties. In addition, the citizenship claims of other groups, particularly women, are likely to be in conflict with the citizenship claims of people with learning difficulties. These issues are discussed. Finally some suggestions are made for policy changes which can promote the citizenship of people with learning difficulties.     

Using Autobiographical Approaches with People with Learning Difficulties

Biography and autobiography have been used in numerous ways to represent people with learning difficulties. In this paper we review a variety of approaches to biography and autobiography with people with learning difficulties, and discuss the roles researchers play. The paper ends with a discussion of the potential of autobiography as a means to change the power relationships in disability research.     

Helping People with Learning Difficulties into Paid Employment

Summary

Welfare to work policies have developed partly from policy rhetoric that argues employment as the best way of ensuring social inclusion for marginalised groups. In the United Kingdom, welfare to work policies for disabled people have developed within an enabling rather than a mandatory system, although organisation and practice have lagged behind. This article explores policies that provide this enabling context for facilitating the transition of people with learning difficulties from benefits to paid employment. It also explores the role of social workers, examining the degree to which their practice reflects the empowering rhetoric of the policy framework and of contemporary social work values.     

Multilevel Models in Family Research: Some Conceptual and Methodological Issues

Examining the impact of context on individual‐level outcomes has become an increasingly common undertaking in the social sciences. The growth in concern for identifying the effects of macrolevel characteristics has generated both theoretical and methodological advancements. In this issue of Journal of Marriage and Family, Butler (2002) researches whether the effect of welfare benefit levels on premarital childbearing varies by context, Hoffmann (2002) researches the effect of context on adolescent drug use, and Simons et al. (2002) examine how the relationship between parenting and child conduct varies by context. These articles are used as a background to discuss important theoretical and methodological issues surrounding the analysis of multilevel data. The authors present a simple analysis of data pertaining to age at first marriage taken from the Panel Study of Income Dynamics and merged with census data to measure contextual effects as a pedagogical device for introducing readers to the benefits of multilevel modeling.     

Disability Simulations: Logical,Methodological and Ethical Issues

This paper examines issues of theory, methods and ethics in the use of disability simulations. Much of the educational, rehabilitation and counseling literature encourages teachers and counselors to use simulations to reduce prejudice toward persons with disabilities. However, the disability simulation literature reveals that: (a) there is typically a failure to consider the relationship between social/behavioral science theory and simulation design; (b) there are methodological weaknesses in most of the studies that render them virtually worthless to evaluate attitude change; and (c) there is little discussion of ethical concerns in disability simulations. A research agenda is proposed that focuses on logical, methodological and ethical issues in disability simulations. It is argued that simulations can be effective if: (a) certain ethical precautions are taken; (b) activities are well designed and evaluated; and (c) the simulation exercises are closely linked to social/behavioral science theory.     

The Child's Voice in Service Evaluation: Ethical and Methodological Issues

This paper examines the ethical issues which arose as part of a qualitative study with children who had experienced sexual abuse and the implications of these ethical issues for the methodology and conduct of the study. The ethical dimensions addressed include protection of the therapeutic relationship, anonymity, confidentiality, safeguarding (child protection), consideration of the sensitivity of the issue, informed consent, the right to withdraw and storage of data. The study formed one component of a service evaluation of a network of therapeutic projects provided by Action for Children, offering interventions for trauma following child sexual abuse. Children and young people's perspectives were collected using a child‐friendly activity book designed to elicit their views on the service. The paper highlights the importance of conducting research which adheres to ethical guidelines and reflects upon the process of designing a study which incorporates them. The research was funded by Action for Children and managed by a steering group comprising managers from the organisation. Copyright © 2010 John Wiley & Sons, Ltd.     

Conceptual and Methodological Issues in Treatment Outcome Research

Few studies have evaluated the comparative efficacy, effectiveness and mode of action of specific treatment interventions, or developed evidence-based best-practice management guidelines for the treatment of problem gambling. While individual and multi-modal programmes demonstrate positive results, systematic well-designed randomised controlled studies incorporating follow-up blind assessments and standardised diagnostic and outcome measures are needed to establish long-term outcomes.     

Methodological Issues in Research on Older Lesbians

Little attention has been paid to methodological issues in conducting research on older lesbians. Investigators who have conducted research in minority communities have also discussed this problem. In this article the author integrates these two bodies of literature. In addition, the author suggests that to address these concerns, future research on older lesbians should identify and examine older lesbians of color and should be designed so that the methodology is participatory in nature, places both the respondent and researcher on equal footing, is flexible so that it can adapt to existing group norms, and can be integrated into other research methods.     

Research with Deaf People: Issues and Conflicts

The field of sign language research is fraught with problems-prejudice, mistrust, misunderstanding, unmet expectations, identity crises and pervasive mythologies, to name but a few. Some of these problems arise from cultural differences between the (usually hearing) researchers and the people they study. Others stem from a lack of appropriate training and sensitivity on the part of the researcher. Those who investigate aspects of deafness itself (medical, educational or psychological) also face these problems since they, too, need to be in contact with members of the deaf community. Researchers in fields other than deafness may find that they share many of the same problems. As a result of extended study of sign language and the deaf community and the experience of working with deaf associates for 15-20 years, both in the United Kingdom and in the USA, we have begun to understand the tensions felt by both deaf and hearing people when they come together in the research enterprise. This paper is an attempt to open a debate on the issues which have been ignored in the search for results and publications. Failure to deal with these points will undermine the validity of supposedly objective results. The issues concern the power relations between the communities and the roles of the research staff in relation to each other and to their respective communities.     

Researching Sexual Revictimisation: Associated Ethical and Methodological Issues,and Possible Solutions

This paper has been inspired by the processes of preparing for ethical scrutiny and seeking ethical approval for a series of studies examining causal mechanisms that might facilitate sexual revictimisation. The focus here is on just four of the issues that arose in the context of the first study: a web‐based survey. One of the aims of the survey is to test whether victims of child sexual abuse who experienced a period of psychogenic or dissociative amnesia demonstrate an exaggerated risk for adolescent/adult sexual assault during this amnesic phase. That is, cases where survivors report ‘suddenly remembering’ in adulthood that they were abused as children, but state that prior to this ‘remembering’ they had no prior knowledge of their abuse. The study design is considered to be the first ethical issue. To enhance the methodological robustness a strategy has been employed to reduce the erroneous inclusion of currently amnesic participants in the non‐abused comparison group. Secondly, consideration is given to the likely harms and benefits that might be incurred or bestowed upon the participants. Thirdly, problems of both re‐traumatisation and vicarious traumatisation in relation to the researcher are contemplated and juxtaposed against the possibility of the facilitation of post‐traumatic growth and a personal shift towards wisdom and generativity. Finally, the survey title was originally criticised as negating ‘fully’ informed consent and a defence is therefore offered that ultimately gained ethical approval. It is hoped that these deliberations and insights may prove useful to others in planning their own research and ethics proposals.     

Quality of Life for People with Learning Difficulties Moving to Community Homes

Research concerning people with learning difficulties who have left institutions has typically investigated how well people 'adapt' to life in the community, and has often ignored users' own perceptions of the changes in their quality of life resulting from the move. In this study, eight people with learning difficulties who moved from a hospital and seven people who moved from parental homes to live in staffed homes in the community were interviewed. Choice, privacy, social life and relationships with their parents and staff emerged as important factors in participants' perception of their quality of life. Their relationships with their parents were found to be close, and in some cases their parents were overprotective. Staff were perceived in some cases as too controlling and in others as providing too little support. The findings indicate that people with learning difficulties moving to community residences have aspirations which encompass far more than a wish to adapt to life in the community, and their relationships with family and staff are a central factor in achieving such aspirations.     

Self-advocacy for People with Learning Difficulties: Does it have a future?

Within such a short-time self-advocacy has become not only fashionable amongst organisations of people with learning difficulties, but also with service providers and non-disabled individuals who have worked in traditional services. The concerns are that self-advocacy has become a process of consulting with users about what they want from services which are usually designed and delivered by non-disabled people. This had led to people recognising and accepting choices that are on offer by non-disabled people. As a consequence an artificial boundary around self-advocacy has been created which has led to people only speaking up about what society is prepared to make available (usually in form of segregated and supervised services) rather than challenging the (lack of) power that people with learning difficulties have in their lives. For people with learning difficulties to gain real change in their personal lives self-advocacy needs to be developed to ensure they not only have the communication skills, but have an appreciation of the importance of changing rules, policies and laws which institutions, local authorities and Governments make to ensure their rights are protected. If they have an appreciation of laws and policies it will result in real change and self-advocacy won't be a tool for service providers. Also, self-advocacy must include speaking up about alternatives to choices being offered, recognising the importance of supporting one another in common areas of concern and to challenge the political system to legislate to provide relevant changes. I have developed a self-advocacy framework model which includes all the elements needed to advocate and achieve permanent change.     

'A Feeling of Being Connected': Friendships between People with and without Learning Difficulties

Recently, programmatic attempts to encourage close ties between people with learning difficulties and typical citizens have increased. It is believed that such relationships will extend the assimilation of people with learning difficulties into society. The researcher presents the perspectives of four pairs of friends about the meaning of their friendships. The informants shared similar ideas and expectations about the characteristics of friendship in general. These included its mutual, exclusive, and voluntary nature; the rights, obligations, and responsibilities of friends to each other; and the positive regard or affection found between friends. Despite efforts on the part of service providers to support the development of friendship between people with and without learning difficulties, the biggest barriers for the individuals in this study were the practices of the human service system, which curtailed opportunities for people which would have promoted the development and maintenance of friendships.     

Professional/client Relationships: Creating a 'Working Alliance' with People with Learning Difficulties

People labelled as mentally handicapped are perhaps the last amongst the various client groups to be considered as autonomous individuals with a say in their own destinies. There is growing pressure on professionals in all fields to relinquish power and control and recognise the inherent problems of attitudes and practices which promote rather than reduce dependency in clients. Even where client groups are recognised as independent and effective members of society, there are strong resistances to this changing professional role. Where severe learning difficulties are involved, the resistances do not arise just from clinging to older, more comfortable attitudes and practices, but also from a genuine uncertainty about how to proceed. The principle of normalisation does not seem to translate easily into new modes of professional/client interaction.

This paper sets professional/client relationships in their immediate historical context and considers how interpretations of normalisation seem to confirm rather than conflict with established professional assumptions. Some approaches are suggested which may help in structuring and supporting a process of change from dependency-inducing relationships to a 'working alliance'.