Kelley Johnson

People with intellectual disabilities: Towards a good life?

Introduction: exploring a good life Part one: Reflecting on a good life: My own Life: Marie Wolfe Thinking about a good life A good life and people with intellectual disabilities Part two: Re-examining key concepts in the light of current practice: A good life in policy? Changing problems changing solutions Changing constructions of work Part three: Rethinking a good life: Justice, rights and capabilities Community, inclusion and belonging Promoting a good life Conclusion.

Living Safer Sexual Lives: Research and Action

In spite of changes in the way people with learning disabilities are perceived, issues of sexuality and personal relationships remain particularly problematic for them. Living Safer Sexual Lives1 was a three‐year Australian action research project which sought to address how people with learning disabilities view these issues. During the first stage of the project, 25 people with learning disabilities told their life stories, with a focus on sexuality and human relationships, to experienced qualitative researchers. In the second stage of the project, these stories were used to provide people with learning disabilities, families and service providers with workshops and resources designed to help people with learning disabilities to live safer sexual lives.

“Nothing about us without us”: The ideals and realities of participatory action research with people with an intellectual disability

Abstract Undertaking participatory research with people with intellectual disabilities is becoming a much‐discussed issue. Some researchers and self‐advocates argue strongly that only participatory research can produce useful, honest research which assists people with intellectual disabilities to attain their rights. Others question whether such research is possible or indeed desirable. This paper describes a three‐year action research project which sought to carry out participatory research on the sensitive issue of sexuality. The research grew partly from concerns of people with intellectual disabilities about this issue and involved them in its management and implementation as well as in developing workshops and publications arising from the research. The research process was consciously self reflective and raised questions about participatory research, representation and difference, and the dialectical relationship between individual life histories and institutional change. This paper discusses these ...

Living Safer Sexual Lives

Executive summary Living Safer Sexual Lives was a three year Victorian Health Promotion Foundation funded action research project undertaken at the Australian Research Centre in Sex, Health and Society (ARCSHS) at La Trobe University. The project was established to gain an understanding of how people with intellectual disabilities saw their sexual lives and relationships and to develop interventions from the research that would assist them to lead safer sexual lives. It began with a series of consultations between the researchers and representatives from service provider and advocacy organisations that revealed the following concerns: barriers and problems which people with intellectual disabilities face in leading safe sexual lives lack of opportunity which people with intellectual disabilities have to talk about sexuality and relationships lack of consultation with people with intellectual disabilities about sexuality and human relationships failure of research to place sexuality and relationships in the broader context of the lives of people with intellectual disabilities

Diverse faces of inclusive research: reflecting on three research studies

Inclusive research has become an increasing focus of research with people with disabilities, particularly people with intellectual disabilities. In this paper the authors argue that this generalized term covers a range of different approaches to including people with intellectual disabilities in research. Based on three case studies in which the authors were academic researchers the paper explores different approaches to inclusive research, raises questions about the place of inclusive research in relation to advocacy and academic research and explores some of the benefits and challenges of inclusive research with people with learning disabilities.

Bullying in schools: why it happens, how it makes young people feel and what we can do about it

In spite of decades of research and more recent guidance by Government, bullying in schools remains a serious concern to young people and to educational practitioners. This two year qualitative study explored the meanings eight teenagers gave to bullying they had experienced, and related this to an analysis of previous research and school policies about bullying. The findings from the study revealed that bullying affected the subjectivity of young people, including how they positioned themselves and believed themselves to be positioned by others. It also found previous research and school policies focused on the behavioural aspects of bullying, neglecting the subjective meanings that it had for those who experienced it. The research findings suggested that a more open approach by adults to what bullying means to individuals, and clearer guidance to teachers on how to work with them about subjective meanings, may provide a new direction in supporting young people who have been bullied.

Research with People with Intellectual Disabilities

Like many other people in our communities who have found themselves on the margins of society, people with intellectual disabilities have long been subject to research which sought to assess, categorise, predict and control their lives and behaviour (Tuhiwai Smith, 1999; Walmsley and Johnson, 2003). It is only relatively recently that they have begun to claim the right to participate in research ‘about them’, to have a voice in research projects and to be active as participants. It is only recently too that some researchers have begun to position differently both themselves and those with whom they are working. This relatively new paradigm of participatory or inclusive research is premised on a view that research undertaken with people with intellectual disabilities should aim to provide opportunities for them to claim a voice in research, to have their skills and experience in their own lives valued and challenge societal inequalities (Atkinson, 2004; Goodley, 1996; Ward, 1997). Such research also challenges the ‘othering’ which pushes people to the edges of society (Traustadottir, 2001). Undertaking this kind of research involves a constant challenge to the researchers’ own prejudices, biases and the ways in which they view their own position as experts.

The UN Convention on the Rights of Persons with Disabilities: A Framework for Ethical and Inclusive Practice?

The UN Convention on the Rights of Persons with Disabilities (CRPD) was passed in 2006 and came into force in 2008. It sets out a number of core values, including dignity, individual autonomy, non-discrimination, participation and community inclusion. Although the CRPD has been recognised as an important step forward by many disabled people and their supporters and provides the foundation for building a good life, the author argues that it does not necessarily equate with it. The underpinning Western values of choice, independence and control are important, but leave out groups of marginalised people for whom these goals may not be achievable. They also present challenges and dilemmas for those involved in supporting/caring roles. In this paper, the author reflects on the implications of the CRPD for the lives of people with learning disabilities, in particular those with profound needs and explores whether it provides a genuinely coherent framework for an inclusive society.

Screened Out: Women with Disabilities and Preventive Health

This paper explores the lived experience of women with disabilities in relation to preventative health. It is based on qualitative research in Australia involving 25 individual interviews and 4 focus groups with women with disabilities about their experience of cervical screening (Pap tests), 16 interviews and 2 focus groups with service providers and advocacy organizations and an audit of 4 Pap Test Services by a researcher with a disability. The research identified three kinds of barrier that prevented some women from accessing cervical screening: societal barriers, individual living circumstances, and the way the women and those around them constituted their subjectivity. This paper outlines briefly the key findings from the study, focussing particularly on barriers relating to subjectivity.

“… but if you're afraid of things, how are you meant to belong?” What belonging means to people with intellectual disabilities?

BACKGROUND A policy commitment to social inclusion has brought about some positive changes in the lives of people with intellectual disabilities; yet many also continue to experience social isolation, poverty and abuse. The authors introduce a framework for belonging from the literature and then present a study exploring the views of people with intellectual disabilities about belonging. These are discussed in relation to the framework identified from the literature. METHOD Three focus groups with 24 participants with intellectual disabilities were conducted in New South Wales and Victoria (Australia). The authors used inductive content analysis to identify four meanings of belonging: (i) belonging in relation to place, (ii) as being part of a community, (iii) as having relationships and (iv) as identity. Also discussed are commonly experienced barriers to belonging identified by participants. CONCLUSIONS Implications for policy, service provision and practice are discussed.