Self-advocacy Research Articles

Perspectives of Transition-Aged Youth with Intellectual and/or Developmental Disabilities about Self-Advocacy and Civic Engagement

AbstractIn alignment with the rallying cry of the self-advocacy movement, it is critical to center the perspectives of people with disabilities about their lived experiences. Yet, little is known about how youth with intellectual and/or developmental disabilities (IDD) engage in self-advocacy and civic engagement in special education. We conducted focus groups with 15 transition-aged youth with IDD across four states about self-advocacy and civic engagement. Youth with IDD reported engaging in self-advocacy at school, but outside of their individualized education program meetings. Parent advocacy and positive partnerships with educators promoted youth self-advocacy. Youth reported minimal involvement in civic engagement, but they had suggestions for systemic changes to special education. Implications for research and practice are discussed.

Making meaning material: A textile politics of autistic interests

Disability offers important considerations for participatory crafting projects that seek to foreground diverse forms of knowledge-making. As a case study in ‘disability craft’, this ethnographic knitting project uses collaborative knitting pattern design to explore autistic adults’ interests in the context of the autistic self-advocacy movement in the United States. Colloquially known as ‘special interests’, these interests challenge ableist stereotypes about what it means to be autistic. Crucially, this project was informed by the autistic author’s own special interest of knitting, making special interests both the object and method of research. Knitting is used to explore what counts as meaningful knowledge and who can create it. Through themes of identity, well-being and communication, special interests are shown to be intensely meaningful. The final knitted objects from this project materialize knowledge about how autistic people navigate the world and show how craft can support autistic activism against epistemic injustice.

Academic Ableism and Students with Intellectual/Development Disabilities: Rethinking Self-Advocacy as an Anti-Ableist Practice

Per laws such as the Americans with Disabilities Act and the Family Educational Rights and Privacy Act, college students with intellectual/developmental disabilities (I/DD) in the United States are expected to be self-advocates and speak up for needed accommodations, regardless of diagnosis or condition. Students with I/DD in particular are frequently taught the dominant view of self-advocacy as a set of skills whereby they achieve self-determination. This view undersells the degree to which self-advocacy is a rhetorical enterprise, wherein students craft their speech to achieve immediate social purposes; and it elides the political history of self-advocacy in the U.S. and its ties to the adult self-advocacy movement. In light of these considerations, I seek to understand how ableism on college campuses gives shape to particular ideas about self-advocacy. Through five student interviews, I analyze how everyday talk about self-advocacy on a university campus is constructed through ableist discourses privileging mastery, concealment of bodily difference, and autonomy. Based on this analysis, I argue that it is necessary that educators reimagine self-advocacy as a collective responsibility engaging students, faculty, administrators, and staff in creating more accessible campus cultures, rather than as a hyper-individualized, self-directed pursuit of personal goals.

Exploring the participation of people with developmental disabilities in self-advocacy groups in Korea: “I like it because I can share my story in front of others with my friends!”

This study investigated the experiences of people with developmental disabilities in self-advocacy groups to better understand the self-advocacy movement, which is currently in its developing stage in Korea. Face-to-face interviews with 18 people with disabilities were conducted. Study participants got involved in self-advocacy groups with the expectation of ‘voicing our stories’, ‘meeting new peers’, and ‘expanding the scope of activity in their local communities’. They participated in various activities from leisure to group advocacy against discrimination based on disability. After participating in self-advocacy groups, they expressed self-confidence, improved their communication skills, and developed new goals for their own lives. Participation in self-advocacy groups helped them replace feelings of loneliness with belonging and expanded their involvement in independent activities and leadership roles. Points of interests This article examines the experiences of people with developmental disabilities in self-advocacy groups in Korea. People joined self-advocacy groups to tell their stories, meet new people, and participate in more activities in the community. People developed communication, leadership, and self-determination skills and reported less loneliness, more confidence, and a greater sense of belonging. People wanted to increase their self-advocacy group’s activities and membership, have leadership roles, and further advocate for non-discrimination and equal rights for people with developmental disabilities. Funding and supporters outside of service providers is suggested to give people with developmental disabilities equal power to lead the self-advocacy movement.

CREATIVITY DEVELOPMENT HOW? TRADITIONAL METHODS OR INFORMATION?

One of the most important components of the process of teaching and learning is studying and developing students’creativity. The goal of the research is to compare the development of creativity of 5-8 grade students (10-15 years old) in the traditional way and by means of information technology. The authors' method is to Following the development of students taking part in the research (altogether n=300) aided by traditional methods (n=150 students) and aided by information technology methods (n=150) for foury ears within the framework of a longitudinal research. Another method is the comparison of two different development methods and one control group (n = 150). Those taking part in the traditional development programme used fun task sheets on paper, while the IT based development programme used digital facilites. The changes were nearly identical in both groups regarding the five dimensions (self-advocacy, dominance, curiosity – interest, genuineness – creativity, energy). The information technology method resulted bigger changes in four areas (nonconformity, complexity, impatience, playfulness) and the traditional method in two areas (risk-taking, perseverance). Both methods were proved to be efficient in development of creativity, but components of creativity changed in different ways. Article visualizations:

Self‐Advocacy

Self‐Advocacy

Self-advocacy for people with intellectual disability in Sweden – organizational similarities and differences

Self-determination and the ability to express opinions and preferences are fundamental to all people. Self-advocacy (SA) among people with intellectual disability (PWID) presents opportunities for them to develop skills to have a say and influence changes in their local environments. The aim of this article is to explore and understand organizational similarities and differences of SA groups for PWID in Sweden by focusing their structures and activities. Within the theoretical framework of Resource-Dependency and New Institutional Perspectives, data from six Swedish SA groups belonging to two different national organizations, have been analyzed. Factors such as affinity and expectations show limited differences, while power distribution, rules and the role of support persons point to greater diversity. However, good relations within the local organizational field seems to be essential to maintain strong SA for PWID.

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

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

Self-Advocacy Is the Answer to Medicaid Challenges

Self-Advocacy Is the Answer to Medicaid Challenges

The “Good” Mother: Ritualized Negotiations As a Form of Disability Self-Advocacy

The “Good” Mother: Ritualized Negotiations As a Form of Disability Self-Advocacy

Inclusion Is Transformative: Self-Advocacy Leaders' Perspectives on Board Inclusion and Tokenism

Abstract People with intellectual and developmental disabilities have begun to experience increased participation and inclusion in boards and policy-making bodies. They have, however, faced challenges in gaining full acceptance similar to those experienced by other marginalized groups. To date, the experience of board participation by individuals with intellectual and developmental disabilities has typically been examined through the narrow lens of leadership development. The purpose of this study, which is part of the National Beyond Tokenism Research Study, was to seek the viewpoints of experienced leaders within the self-advocacy movement regarding the prevalence of tokenism and practices they have found effective for inclusive leadership. Implications for future research and practice are discussed.

‘We Were More Radical back then’: Victoria's First Self-Advocacy Organisation for People with Intellectual Disability

This article is concerned with exploring the historical development of Reinforce, the oldest self-advocacy organisation for people with intellectual disability in Victoria. In particular, it considers how governmental indifference, as well as ad hoc funding and support, has hindered the growth of the organisation and, more generally, the growth of the self-advocacy movement in Victoria. By obtaining a deeper understanding of the input from the policy makers, professionals, and supporters working in the field of intellectual disability, we can begin to comprehend some of the reasons for the comparatively slow development of self-advocacy in this country.

‘We Were More Radical back then: Victoria's First Self-Advocacy Organisation for People with Intellectual Disability

This article is concerned with exploring the historical development of Reinforce, the oldest self-advocacy organisation for people with intellectual disability in Victoria. In particular, it considers how governmental indifference, as well as ad hoc funding and support, has hindered the growth of the organisation and, more generally, the growth of the self-advocacy movement in Victoria. By obtaining a deeper understanding of the input from the policy makers, professionals, and supporters working in the field of intellectual disability, we can begin to comprehend some of the reasons for the comparatively slow development of self-advocacy in this country.

Nominal Group Technique: An accessible and interactive method for conceptualizing the sexual self-advocacy of adults with intellectual and developmental disabilities

People with intellectual and developmental disabilities must often advocate for themselves in many facets of life, including sexuality. Because of this, sexual self-advocacy is an important concept to develop and apply to policy and practice. This paper provides a conceptualization of sexual self-advocacy, a view of sexuality formulated by adults with intellectual and developmental disabilities that is closely tied to the values of the Self-Advocacy Movement. In describing the study process, this paper also puts forth the Participatory Action Research method, Nominal Group Technique, as an accessible method for gaining insight from adults with intellectual and developmental disabilities. The choice of Nominal Group Technique as a research method was motivated by several factors. Nominal Group Technique served to counterbalance many of the potential research difficulties when working with people with intellectual and developmental disabilities, including the need for understandable, inclusive, and participatory ways to access data from people with intellectual and developmental disabilities, and addressed the topic of sexual self-advocacy that is important to people with intellectual and developmental disabilities.

Stigma: Barriers to Culture and Identity for People With Intellectual Disability

Abstract This exploratory article examines disability culture and identity for people with intellectual disability. In doing so, we argue that the stigma around intellectual disability severely affects people with intellectual disability's sense of culture and identity. This stigma causes internalized ableism and leads to people with intellectual disability disassociating from other people with intellectual disability in an attempt to cope with this stigma. True community inclusion for people with intellectual disability can only occur when this stigma is removed. Fortunately, as we argue, the self-advocacy movement is making great strides in doing so. The self-advocacy movement must be supported to achieve true inclusion and a sense of culture and identity for people with intellectual disability.

Self-Advocacy: Enhancing the Education of Down Syndrome Learners

The aim of the article is to provide Down syndrome (DS) learners with better educational opportunities by implementing the principals of self-advocacy, at school level. A literature review was done to obtain background information on the concepts of DS and the self-advocacy program. Qualitative research methods like art-based research combined with a narrative approach was implemented to get information from the participants because they could not always verbalise their feelings. From the findings it can be deduced that some of the principals underlying the self-advocacy movement can be used to enhance the educational opportunities of DS learners. The contribution this article makes is to apply the ideas of the self-advocacy movement to the education of learners with DS, as a possible way to give these learners a voice. The assumption is that if they can give input regarding their education, it will improve their opportunities to become valued human beings. DOI: 10.5901/mjss.2014.v5n27p576

Learning self-advocacy.

Learning self-advocacy.

The Story of intellectual disability: an evolution of meaning, understanding, and public perception

Accessible, engaging, and filled with contributions by the country's most celebrated disability experts, this fascinating volume skillfully captures how intellectual disability has been understood from prehistoric times to present. Readers will discover how different societies have responded to people with disability throughout history, how life has changed for people with intellectual disability and their families over the centuries, and how key historical figures and events sparked social change and shaped our modern understanding of intellectual disability. Enhanced with remarkable images and illustrations, including exclusive photos from the editor's private collection of cultural artifacts, this informal history is a must-read for anyone devoted to improving the lives of people with intellectual disability. Top Disability Experts Explore: Early ideas about the causes of intellectual disability Evolution of the concept of intellectual disability The role of religion in the ancient world's understanding of disability Changing approaches to education and intervention The rise and fall of the institution system Depictions of intellectual disability in film, literature, and art State-sanctioned sterilization programs in the twentieth century The self-advocacy movement The emergence and impact of parent associations, support groups, and training programs How and why terminology changed throughout the years and more

Becoming an ‘Autistic Couple’: Narratives of Sexuality and Couplehood Within the Swedish Autistic Self-advocacy Movement

Research on sexuality and autism is dominated by a sexually deficit view of autism. According to this view, people with autism are considered different from neurotypicals and in need of sexual education that is specially adapted to the social impairments of people with autism. Perspectives on sexuality, couplehood, and autism are gradually changing, and this is partly because of alternative views on autism expressed and advocated within autistic self-advocacy movements. The present paper explores discourses within the Swedish autistic self-advocacy movement of an ‘autistic’ sexuality and couplehood (sexuality and couplehood on people with autism’s own terms). The analysis is based on articles in a Swedish magazine, Empowerment, published between 2002 and 2009 that was produced by and aimed at adults with autism.

Conceptualizing Inclusive Research with People with Intellectual Disability

The inclusion of people with intellectual disability in research is a common requirement of research funding. Little conceptual clarity is available to guide the conduct of inclusive research or judge its fidelity, there is minimal evidence of its impact, and questions remain about its feasibility and rigour. A comprehensive review of the peer reviewed literature and key texts was undertaken to more clearly conceptualize inclusive research and identify the issues associated with ways of approaching it. Three approaches to inclusive research were identified: advisory, leading and controlling, and collaborative group. Using the literature and the authors' own experience, each approach is illustrated and discussed. A clearer conceptual framework is developed to guide researchers and administrators as they consider inclusive research and its feasibility to particular research questions. A strong self-advocacy movement is identified as one of the conditions necessary for inclusive research to flourish. Organisations including government that fund research about people with an intellectual disability in the UK and Australia say it is important that people with an intellectual disability are involved in planning and doing research that is about them; this is called inclusive research. Some people have written about what they have done but not enough has been written and shared about the different ways of doing inclusive research. The people who wrote this paper looked at all the literature about ways of doing inclusive research and reflected on the way they had worked with a group of self advocates in writing about their history. There are three main ways of doing inclusive research; (i) Where people with an intellectual disability give advice about what to do; (ii) Where people with an intellectual disability lead and control research (iii) Where people with and without intellectual disability work together as a group with different jobs based on their different interests and skills. In the past there has been an idea that there is only one way to do inclusive research. This paper talks about the advantages and disadvantages of different ways of doing inclusive research, and when you might choose one way rather than another.