Self-advocacy Research Articles

Management, Leadership, and User Control in Self-Advocacy: An English Case Study

This paper presents findings from a qualitative research project on an English self-advocacy organization. In light of recent political and economic developments that have threatened the sustainability of a number of self-advocacy groups for people with intellectual disability, I seek to explore how one particular organization managed to survive and grow. In particular, the paper explores themes of management, leadership, and user control, linking these to external perceptions about self-advocacy organizations. The organization in my study developed an "interdependent" governance model based on key organizational roles for nondisabled advisors and self-advocates, which proved popular with external funders. Despite the organization's notable achievements, its success raises questions for the wider self-advocacy movement, notably how leadership capacity can be developed among self-advocates.

Introduction to the Special Issue: Community Living and Participation

Background. In July 2012 the Research and Training Center on Community Living at the University of Minnesota hosted a State-of-theScience Conference on Community Living Outcomes and Quality of Life (SOSC). The purpose of this conference was to bring together researchers and other stakeholders to provide a summary of what is known, identify points of debate and gaps, and establish recommendations for future research related to community living outcomes and quality of life in for people with intellectual and developmental disabilities (IDD). The conference had a number of focus areas, including: social inclusion; self-determination; family experiences, support and siblings; employment; health and wellness; methodological issues in research; quality of life indicators; outcome predictors; and using outcome data to inform policy. The State of the Science Conference was a vehicle through which these key topics related to community living and participation could be discussed and future research goals identified. This special issue of Intellectual and Developmental Disabilities (IDD) includes papers written by the presenters and participants of the SOSC on key topics associated with community living outcomes. The purpose of this introduction is to place the special issue papers in a broader research, policy and service-delivery context. The phrase ‘‘state-of-thescience’’ connotes rigorous, technical analysis of scientific knowledge using techniques such as systematic reviews and meta-analysis. These are valid approaches, but they require a level of research evidence and a consistency in outcomes measures that are rarely available in IDD research. As Moseley, Kleinert, Sheppard-Jones, and Hall (2013, this issue) note, public policy draws on the best available evidence, and often cannot wait for gold-standard randomized control design studies to be completed. Moreover, in many public policy areas, including IDD services, it is neither possible, nor ethical, to randomly assign people with IDD to treatment and non-treatment groups. Nature of the special issue papers. Instead of systematic reviews, this special issue presents a series of expert commentaries and narrative reviews that focus on important policy-related and conceptual issues that were examined at the State-of-theScience Conference. As Lakin (2012) noted, ‘‘In policy research it is often necessary to accept the preponderance of good evidence through comprehensive reviews of all the available credible evidence’’. Ideally, such reviews select the best available evidence and analyze and interpret it in a manner underpinned by a detailed understanding of the circumstances in which the evidence was obtained, and of the IDD policy and service-delivery context in which the conclusions are to be applied. We hope readers will find that the commentaries, reviews and analyses presented in this special issue display these characteristics. US focus drawing on US data. One feature of a number of the special-issue papers is a strong focus on outcomes, services, policy and research involving people with IDD in the US. A related characteristic is that many of these papers draw on data from one or more US national surveys, such as the Administration on Intellectual and Developmental Disabilities (AIDD) Projects of National Significance. These projects include the National Core Indicators project (Human Services Research Institute and the National Association of State Directors of Developmental Disability Services), Residential Information Systems Project (University of Minnesota), State of the States in Developmental Disabilities Project (University of Colorado, Boulder) and Access to Integrated Employment: National Data Collection on Day and Employment Services for Citizens with Developmental Disabilities (University of Massachusetts, Boston). However, the spotlight on the US is not all encompassing. For example, Amado, Stancliffe, McCarron and McCallion (2013, this issue) draw on national findings from Ireland arising from the Intellectual Disability Supplement to The Irish Longitudinal INTELLECTUAL AND DEVELOPMENTAL DISABILITIES

Doing Disability Justice

Doing Disability Justice

Normal for an Asperger: Notions of the Meanings of Diagnoses Among Adults with Asperger Syndrome

This study explores the production of a counterhegemonic discourse of "autistic normalcy" among adults with high-functioning autism by analyzing notions of diagnosis. The discourse analyses are based on material from ethnographic fieldwork in a Swedish educational setting. Study participants were 3 male and 9 female adults who had been diagnosed with Asperger syndrome. The notion of diagnosis comprises issues concerning coming out and knowledge production. The findings capture an ongoing reformulation process among people involved in the autistic self-advocacy movement when it comes to the meanings of Asperger syndrome and what it means to be a person with Asperger syndrome.

Adaptation or recognition of the autistic subject? Reimagining autistic work life: Deconstructing the notion of “real jobs” in the Swedish autistic self-advocacy movement

Several researchers stress the importance of listening to autistic adults’ own experiences of work and related issues.This paper critically explores an ambivalent discourse of empowerment using not ...

Disability Identity of Leaders in the Self-Advocacy Movement

Life stories and perspectives of leaders in the self-advocacy movement were explored to enhance knowledge about disability identity formation. In-depth qualitative interviews were conducted with 13 leaders in the self-advocacy movement. Five major themes emerged: (a) resistance--claiming personhood and voice; (b) connection with disability community; (c) reclaiming disability and personal transformation; (d) interconnection with broader disability rights movement; and (e) bond with social justice and interdependency.

The Times They Are a Changing: Special Olympics and the Movement Towards Valued Lives and Inclusion

Be a Fan. You see that on Special Olympics literature, websites, and paraphernalia. More than a mere slogan, Be a Fan is part of a belief system that values people with intellectual disability for their gifts and talents, their abilities and humanity. I am a Special Olympics volunteer. Like approximately 550,000 people in the United States and 850,000 internationally (Andrea Cahn, personal communication, October 14, 2010), I give a small bit of my time, talent, and treasure to Special Olympics as Senior Advisor to the Chairman and CEO. No, I am not out there coaching or training athletes or refereeing events, that is just not something where I have anything to offer. I am participating in discussions, reviewing or drafting the occasional document, and responding to ideas and issues impacting the inclusion and full citizenship of people with intellectual disability, something I have been doing for most of my adult life. I hope my very small contribution to Special Olympics is helping the movement towards the goals of full citizenship, community membership, and respect for all people with intellectual disability. Movements and organizations, like people, grow and change. I am writing this article because, as the world for people with intellectual and developmental disabilities continues to change and evolve, I think those who have advocated for community inclusion and participation have an ally, one we have failed to recognize, and with gifts and talents we have ignored, one we need to take seriously, and one who many of us shunned in the past. Special Olympics is a program we need now perhaps more than ever.

New Guide Encourages Self-Advocacy

New Guide Encourages Self-Advocacy

Leadership development of individuals with developmental disabilities in the self‐advocacy movement

Exploring the life stories of leaders in the self-advocacy movement can expand our knowledge about leadership development of individuals with developmental disabilities. A better understanding of this process may assist with supporting the movement and leadership development of youth with disabilities. In-depth qualitative interviews were conducted with 13 leaders in the self-advocacy movement within the USA in order to explore their life stories. Purposeful sampling contributed to a diverse sample of leaders. A grounded theory approach led to the identification of major themes and factors associated with their leadership development. Four major themes emerged: (1) disability oppression and resistance; (2) environmental supports and relationships; (3) leadership skills; and (4) advanced leadership opportunities. Findings have conceptual and practical relevance for future interventions and research.

Reflections on doing inclusive research in the “Making Life Good in the Community” study

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-researcher's 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.

North Carolina Developmental Disability Services and Supports: Steps to System Improvement

to construct a system that assures safety, high quality service access, consistency, and equitable distribution of resources to address these needs in a way that is congruent with the shared philosophy, values, and mission of the disability group as well as being consistent with best practices. North Carolina has a history of providing both a strong and robust system of services for persons with I/DD and a cadre of well-trained and experienced developmental disability professionals. These individuals have acted in partnership with recipients of services and their families, service providers, advocates, sister agencies, and other stakeholders to establish a solid infrastructure. That infrastructure should meet the goals of safety, physical and mental health, independence, productivity, authentic community participation, and a self-determined life for all citizens with developmental disabilities in our state. The state is also fortunate to have a broad array of dedicated providers of service, an exceptional Developmental Disabilities Planning Council, an independent protection and advocacy agency, a strong self-advocacy movement, and active

After Disability: A Guide to Getting On with Life

In After Disability: A Guide to Getting On with Life, Lisa Bendall examines a wide range of issues related to living with a disability. Her intent was to create a handbook addressing topics of relevance to the everyday needs of Canadians with disabilities. In particular, this book is intended for those with newly acquired disabilities, who may not know where to start in terms of identifying the resources that are available to them or getting answers to the many questions they may have. However, the information it contains will likely be of interest to any individual with a disability, as well as to their families and caregivers. The book is accessible and well organized. It is written in a conversational and readable tone. The content focuses on practical issues of living with a disability. Selected topics address a broad spectrum of issues, including self-advocacy and the law, assistive devices, housing, finances, health care, employment, sexuality, transportation, recreation, and travel. Bendall does not attempt to provide a comprehensive treatment of any particular subject; rather, she offers an overview of each theme and identifies various resources relevant for further examination of the subject. In many cases she offers practical suggestions and strategies derived from the experience of others living with disabilities. A recurring theme throughout the book is that individuals with disabilities need to advocate for their rights and insist on respect and dignity as they interact with service providers, employers, and government officials. An important strength of this text is the many links that are provided to relevant organizations, publications, and Web sites. These links offer opportunities for those interested in finding more detailed information about a particular subject to further pursue their research. Bendall has also included numerous quotations from Canadians with disabilities. This feature gives the book a more personal feel, and the anecdotes provide a counterpoint to the “guidebook” style of the rest of the text. This book appears to be a unique resource. One of its most relevant features is the consistent Canadian focus of the material. Indeed, almost all the resources described in the book are Canadian. After Disability can help you find a lawyer specializing in disability-related tax issues, access information on grants for students with disabilities, or identify resources on parenting with a disability. The variety and relevance of these links are impressive. Bendall has been deliberate in describing resources from across the country and even surveys provincial and municipal differences on a number of issues. Physiotherapists will likely find this book a useful resource that they can recommend to patients. It may be especially relevant to individuals who are unaware of what is available in their community or who are having difficulty in accessing resources. Therapists may well learn of programmes and services that they were not previously aware of. Rehabilitation centres, in particular, should consider having this book available in their libraries and making it accessible to both staff and patients. After Disability is a well written and clearly organized handbook covering a wide range of topics related to living with a disability. This book represents an important contribution to the pool of available resources in this area, and it is worthwhile reading for anyone interested in disability issues in Canada.

Effective Self-Advocacy

Effective Self-Advocacy

Self-Advocacy Instruction: Bridging the Research-to-Practice Gap

Self-Advocacy Instruction: Bridging the Research-to-Practice Gap

Self advocacy

Self advocacy

Empowerment, self-advocacy and resilience

This article critiques the relationship between the aims of 'learning disability' policy and the realities of the self-advocacy movement. A previous study found that self-advocacy can be defined as the public recognition of the resilience of people with learning difficulties. In the current climate of Valuing People, partnership boards and 'user empowerment', understanding resilience is crucial to the support of authentic forms of self-advocacy. This article aims to address such a challenge. First, understandings of resilience in relation to self-empowerment and self-advocacy are briefly considered. Second, the current policy climate and service provision rhetoric are critically explored. Third, it is argued that we need to recognize how self-advocacy groups celebrate resilience through a variety of social and identity-shifting actions. How current policy responds to these aspects of resilience is questioned. It is concluded that the lived reality of self-advocacy needs to be foregrounded in any attempt to understand empowerment.

HCI for people with cognitive disabilities

The self-advocacy movement (Dybwad & Bersani, 1996) grew out of resistance to oppressive practices of institutionalization (and worse) for people with cognitive disabilities. Moving beyond the worst abuses, people with cognitive disabilities seek as full participation in society as possible.

‘Native’ Culture and Self‐advocacy

Book reviewed in this article:Takashi Irimoto and Takako Yamada (eds). Circumpolar Ethnicity and Identity.

Self advocacy

Self advocacy

Self-advocacy, "learning difficulties," and the social model of disability.

In this paper we draw upon a research project whose authors examined the self-advocacy of people with the label of "learning difficulties." We examined self-advocacy in action within groups and explored understandings of self-advocacy accounted for in personal narratives. We identified the background of our study, reflected on the use of ethnographic and narrative methods, and pinpointed three findings that highlight the significance of self-advocacy in the lives of people with the label of "learning difficulties": (a) the distributed and multilocated nature of self-advocacy, (b) self-advocacy's dialogue with the relational nature of "learning difficulties," and (c) support for the self-advocacy movement. We conclude that a variety of theoretical, policy, and practical implications surface through an engagement with the self-advocacy movement.