Patsie Frawley

Reflections on Doing Inclusive Research in the "Making Life Good in the Community" Study.

Abstract Background The involvement of people with intellectual disability in research is framed as inclusive, denoting their active participation in its processes. However, questions are raised about ownership and control, genuineness of involvement, and the need for honest accounts to develop practice. Such issues are particularly pressing in Australia, where there is the absence of a strong self-advocacy movement to partner with academics or hold them to account. Method Action research was used to reflect on and progressively refine the support provided by a research mentor to a co-researcher with intellectual disability employed on a large multimethod study. Results and Conclusions Accepting the co-researchers strengths and designing support on the job rather than teaching them to “pass” before venturing out in the field are important in ceding control. Support required for a co-researcher is more than practical and involves developing a relationship that can actively challenge views and foster reflection. Ownership of questions and disseminating of outcomes are hampered by contextual factors such as tender processes, short-term positions, and a failure to acknowledge the support required to present findings.

Inclusion in political and public life: The experiences of people with intellectual disability on government disability advisory bodies in Australia

Abstract Background Civil and political participation lies at the core of citizenship. Increasingly, people with intellectual disability are members of disability advisory bodies. This study investigated the political orientations of advisory body members with intellectual disability, their participatory experiences, and the types of support they received. Method The 9 people with intellectual disability who in 2005 were members of disability advisory bodies at a state, national, and Victorian local government level were interviewed, together with 12 other members or secretariat staff of these bodies. Observations were also conducted of advisory body meetings. Results The political perspective of members with intellectual disability varied, but all had a background in self-advocacy. They found the work hard but rewarding and encountered both practical and intangible obstacles to participation. Members received varying types of practical support, but a supportive collegial milieu was characteristic among members who felt most confident about their participation. Conclusions The milieu, structures, and processes of advisory bodies must all be adjusted to accommodate people with intellectual disability if they are to participate meaningfully.

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.

Social work practice and intellectual disability

Understanding Intellectual Disability The Social Problem of Intellectual Disability Services to Support People with Intellectual Disability Working With Individuals to Assess and Plan Support: Initial Steps Planning, Dilemmas and Decision Making Activism, Advocacy and Self Advocacy Implementing Policies for Social Inclusion References

“I'm in their shoes”: Experiences of peer educators in sexuality and relationship education

Abstract Background Sexuality and relationship education for adults with an intellectual disability has failed to include them in roles other than as learners. This paper reports findings from a study of the experiences of peer educators with an intellectual disability who co-facilitated a respectful relationships education program. Method Qualitative data were collected about the experiences of 16 peer educators through in-depth interviews and observations of their work in delivering the program. These data were thematically analysed. Findings Peer educators reported that peer education gave them a sense of empowerment, positioned them as credible sources of information about relationships, enabled them to help others, and gave them an opportunity to learn new knowledge about respectful relationships, community resources and supports, and new skills. Conclusions This study presents an alternative approach to relationship education that involves people with an intellectual disability as peer educators and that benefits these people.

Reflections on being a first generation self-advocate: Belonging, social connections, and doing things that matter

Abstract Background Despite good policy intentions, people with intellectual disability continue to be socially excluded. Social geographers suggest the potential of self-authored spaces as catalysts for social inclusion. One such space, self-advocacy, is commonly perceived as part of a political movement for social change rather than a vehicle for social inclusion of its members. This paper investigated what involvement in self-advocacy has meant to long-term members of a self-advocacy group in Victoria, Australia. Methods In-depth interviews were conducted with 12 self-advocates about their reflections on involvement in the group. These data together with the commentary of 5 self-advocates during interviews with 18 self-advocacy supporters about their recollections of involvement in the group were transcribed and analysed thematically. Findings Through their involvement in self-advocacy, members of the group had gained a sense of belonging, social connections, and purposeful occupation, which included paid project work, lobbying, and organisational leadership and management. Conclusions This study suggests that self-advocacy groups can be places that foster social inclusion, potentially offering “membership” of an exclusive group, a wider social movement and of mainstream society.

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

Why are conferences “Sometimes about us, without us”?

One of the three authors of this paper, Heather Forsyth, is a self-advocate and a seasoned participant in the Australasian Society for the Study of Intellectual Disability (ASSID) National Conferences. ASSID promotes research and practice development in the area of intellectual disability and each year holds a national conference. Heather’s continued frustration with the inaccessibility of these conferences to people with intellectual disability, together with our perception of the inherent contradictions between the practice of conferences and the value base of organisations such as ASSID, prompted us to question how concepts such as ‘‘accessible’’ and ‘‘inclusive’’ are applied to conferences about intellectual disability. Our aim in tackling this issue was to consider whether ‘‘inclusiveness’’ and the values of equality, self-determination and participation that have come to underpin policy and practice in the field of intellectual disability, can be achieved in the environment of conferences that have historically and primarily been exclusive. Is ‘‘Nothing about us, without us’’ achievable, or when it comes to conferences is it more a case of ‘‘Sometimes about us, without us’’? The authors felt that this issue was important enough to seek the views of conference organisers, self-advocate participants, and office-bearers of ASSID, to gain a fuller understanding of how the concepts of ‘‘inclusiveness’’ and ‘‘accessibility’’ have been addressed by ASSID. We asked the broad question: ‘‘Are ASSID conferences inclusive’’? We ran a focus group with 11 self-advocates who had attended conferences, conducted phone interviews with past conference organisers, and reviewed ASSID conference programs for the 10 years from 1994–2004. Based on information gathered through this process, our own reflections, and the discussion generated from a symposium held at the 2005 ASSID Conference, we identified the following issues, and make some suggestions for a way for ASSID to move forward on this issue.

Sex and disability

The title of this book should clearly announce what it is about, two subjects brought together that can conjure many thoughts and raise many questions. This is not the first book about sex and disability and not the first to consider sexuality from a social, theoretical and political perspective. In 1987, and later in 1993, Ann Craft began to talk about the sexual rights of people with an intellectual disability and in 1996 Tom Shakespeare, Kath Gillespie-Sells and David Davies wrote The sexual politics of disability (Cassell). These truly groundbreaking books did a great deal to progress thinking and practice that supported people with a disability to be seen as being sexual and to live sexual lives. However, there is still much thinking and action needed to continue this cause. The question I raise in relation to this need and the present book is does it or can it progress thinking and action to support sexual self determination for people with a disability and the social change needed to enable this? Perhaps this was not the aim of the authors and editors. The introduction suggests there might be a more personal aim for the editors: to determine where they are positioned in relation to sexuality and disability personally. Whilst reflection of this nature is worthwhile perhaps for the authors, it does not add a great deal for the reader – and for this reader it was frustrating. There are many real and evidenced issues and ideas that do need to be considered in a book about sex and disability. One of these is addressed in this collection of essays. The chapter by Michel Desjardins on the forced sterilisation of people with an intellectual disability is well researched, theoretically underpinned and very well written. It highlights the ongoing struggle between rights and practice for this group of people with a disability who are most at risk of not being seen as, or supported to be, sexually self-determining. Whilst sexual rights may not be the only issue for people with a disability, this chapter reminds us that they are still significant and we do need to think more about the contradictions that are occurring even within a more informed world that has perhaps begun to accept that disability does not mean unable or unhuman. Much of this book, however, does not engage with the topic of sex and disability in a way that informs the reader about the issues as they are lived by people with a disability. Russell Shuttleworth’s chapter is an exception. In his chapter, based on his ethnographic work with men with physical disabilities in the 1990s in the USA, he introduces the reader to the men he did his research with and their thoughts and experiences about sex, sexuality and intimacy in their lives. Most importantly, he reminds us that whilst it is important to continue a theoretical consideration of sex and disability and cultural transformation these aims are ‘far removed from most disabled people’s immediate concerns’ (66). He tells us through the insights of the men that their aspirations were more practical and immediate – to be able to have sexually intimate relations.

A narrative review of the literature about people with intellectual disability who identify as lesbian, gay, bisexual, transgender, intersex or questioning:

This narrative review of the research literature presents a summary about the key issues facing people with intellectual disability (ID) who identify as lesbian, gay, bisexual, transgender, intersex or questioning (LGBTIQ). The aim of this review was to consolidate research of the topic; to identify whether any pilot studies reporting social/sexual/educational interventions had been published; and to offer some perspective on the type of future research required to better inform policy, practice and theory that may lead to better outcomes for people with ID who identify as LGBTIQ. Almost all of the research literature on the topic is either exploratory or descriptive which serves to outline the range of issues faced by people with ID who identify as LGBTIQ. Urgently needed as the next step, however, is a concerted effort to conduct a range of innovative educational and social interventions with collection of targeted and appropriate outcomes data.