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1 – 10 of 257Rachel Fyson, Gordon McBride and Brian Myers
The aim of the research described was to gather information about both the objective and the subjective experiences of self‐advocates who had attended learning disability…
Abstract
The aim of the research described was to gather information about both the objective and the subjective experiences of self‐advocates who had attended learning disability partnership boards, in order to promote effective practices. Findings show that, although people with learning disabilities were present at meetings, a variety of barriers limited their ability to participate actively. Problems included lack of financial and practical help as well as the limited availability of accessible information. There were also, however, examples of good practice, and many self‐advocates were pleased at how their local authorities were beginning to implement effective partnership working practices. Ways of supporting self‐advocates and other people with learning disabilities to fulfil a truly representative, rather than a merely symbolic, function at partnership board meetings are discussed.An accessible summary of these findings is available to download from the project website: www.bris.ac.uk/Depts/NorahFry/Strategy/papers.htm
Christine L. Nittrouer, Evan E. Dean and Karrie A. Shogren
Autism Spectrum Disorder (ASD) is the fastest-growing disability in the US; despite years of federal policy aimed at enhancing employment outcomes for this population, these…
Abstract
Autism Spectrum Disorder (ASD) is the fastest-growing disability in the US; despite years of federal policy aimed at enhancing employment outcomes for this population, these outcomes remain limited. Little is known about the allyship strategies used to support job seekers with ASD to communicate with potential employers. The current study assesses self-advocates with ASD and supporters of people with ASD (e.g., family members, caregivers, employment specialists, vocational rehabilitation professionals) about the advocacy strategies they have implemented during the hiring process to enhance communication with employers. Study participants rated the effectiveness of the strategies that others may use, as well as the strategies they have used when seeking employment for an open position. Finally, a variety of psychological variables (e.g., self-determination, self-advocacy, global self-esteem, mentorship, incivility) were measured that are suspected to influence the use of these strategies in seeking employment. Findings inform effective support and advocacy strategies as well as ways that varying psychological variables predict the use of these strategies, informing personalization of interventions and supports for self-advocates and allies.
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Purpose: This chapter proposes narrative allyship across ability as a practice in which nondisabled researchers work with disabled nonresearchers to co-construct a process that…
Abstract
Purpose: This chapter proposes narrative allyship across ability as a practice in which nondisabled researchers work with disabled nonresearchers to co-construct a process that centers and acts on the knowledge contained in and expressed by the lived experience of the disabled nonresearchers. This chapter situates narrative allyship across ability in the landscape of other participatory research practices, with a particular focus on oral history as a social justice praxis.
Approach: In order to explore the potential of this practice, the author outlines and reflects on both the methodology of her oral history graduate thesis work, a narrative project with self-advocates with Down syndrome, and includes and analyzes reflections about narrative allyship from a self-advocate with Down syndrome.
Findings: The author proposes three guiding principles for research as narrative allyship across ability, namely that such research further the interests of narrators as the narrators define them, optimize the autonomy of narrators, and tell stories with, instead of about, narrators.
Implications: This chapter suggests the promise of research praxis as a form of allyship: redressing inequality by addressing power, acknowledging expertise in subjugated knowledges, and connecting research practices to desires for social change or political outcomes. The author models methods by which others might include in their research narrative work across ability and demonstrates the particular value of knowledge produced when researchers attend to the lived expertise of those with disabilities. The practice of narrative allyship across ability has the potential to bring a wide range of experiences and modes of expression into the domains of research, history, policy, and culture that would otherwise exclude them.
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Iwona Nowakowska and Ewa Pisula
The aim of the paper is to assess whether participation in a two-session workshop led by self-advocates with mild intellectual disability (ID), supported by professional staff…
Abstract
Purpose
The aim of the paper is to assess whether participation in a two-session workshop led by self-advocates with mild intellectual disability (ID), supported by professional staff, affects high school students’ impression of people with ID, measured by a self-report questionnaire based on a semantic differential.
Design/methodology/approach
The study was paper-pencil questionnaire-based and anonymous, conducted in Warsaw, Poland. Three measurements were performed using two semantic differentials – two weeks before the workshop, one day and three months afterward. In total, 50 high school students in the workshop group and 43 students in the control group took part in the study.
Findings
After the workshop, people with ID were perceived as more calm, compliant and adult and this change was not observed in the control group.
Research limitations/implications
The picture of people with ID after the workshop may probably have been even more complex than before. However, the study focuses on a specific intervention and does not include data about other, similar meetings led in another school and by other self-advocates.
Practical implications
It is worthy to design anti-discriminatory workshops led by the self-advocates to impact the perceptions of people with ID. The particular intervention would benefit from alterations.
Social implications
Workshops performed by self-advocates with ID may be promising in terms of limiting stereotype formation in target groups of workshops.
Originality/value
This research fills the gap in the longitudinal studies on the changes in the impressions about people with ID following an intervention based on personal contact.
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Jessica Jacobson, Phillip Sabuni and Jenny Talbot
Drawing on multi-method research conducted in 2013-2014, the purpose of this paper is to consider the extent and nature of disadvantage experienced by individuals with…
Abstract
Purpose
Drawing on multi-method research conducted in 2013-2014, the purpose of this paper is to consider the extent and nature of disadvantage experienced by individuals with psychosocial and intellectual disabilities (PID) who come into contact with the criminal justice system in Zambia. The research was conducted as part of a wider project aiming to bring about improvements in how people with PID are dealt with by the criminal justice services.
Design/methodology/approach
The research activities included interviews with 29 individuals with PID who had experienced the criminal justice system as suspects, defendants or prisoners (“self-advocates”). A focus group and interviews were also conducted with the family members of people with PID who had criminal justice experience.
Findings
People with PID in contact with the criminal justice services in Zambia are disadvantaged and discriminated against routinely and systematically. Like all detainees, they experience harsh and at times brutal conditions of detention. However, because of their disabilities, such experiences can be more keenly felt: their disabilities may be exacerbated by detention or by limited or non-existent health care; and they are likely to be less resourceful than other detainees and, therefore, less able to cope with the privations of detention.
Originality/value
In drawing on the self-advocate interviews, this paper presents direct, vivid accounts of what it means to be a suspect, defendant or prisoner with disabilities in Zambia. These are extremely marginalised and multiply disadvantaged individuals whose voices are rarely heard.
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This article considers the role and function of learning disability partnership boards. It focuses on how partnership boards have developed their skills in working in partnership…
Abstract
This article considers the role and function of learning disability partnership boards. It focuses on how partnership boards have developed their skills in working in partnership with people with learning disabilities (self‐advocates) and uses examples from around England as well as observations from self‐advocates themselves.
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László Bercse, Helen Portal and Milan Šveřepa
Inclusion Europe, the European movement of people with intellectual disabilities and their families, shared what people with intellectual disabilities and their families faced…
Abstract
Inclusion Europe, the European movement of people with intellectual disabilities and their families, shared what people with intellectual disabilities and their families faced during the COVID-19 crisis. Collecting information showed people with intellectual disabilities were segregated and discriminated against. The pandemic intensified and magnified the segregation and discrimination of people with intellectual disabilities, shedding light on their exclusion. Many human rights were violated. Therefore, such testimonies should encourage governments and institutions to urgently design a society that includes people with intellectual disabilities and their families.
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In 1999, a team from England, comprising self‐advocates, family members, leading professionals and policy‐makers, participated in the annual ‘Collaborative Academy’ of the US…
Abstract
In 1999, a team from England, comprising self‐advocates, family members, leading professionals and policy‐makers, participated in the annual ‘Collaborative Academy’ of the US President's Committee on Mental Retardation. Fundamental to the Academy method is the commitment to work inclusively across different interests and engage directly with experiences. This paper identifies 41 lessons drawn by the team from US experience, including research‐ and practice‐based perspectives relevant to maximising progress in the context of the forthcoming national learning disability strategy in England. Focusing on the four main themes of learning from good stories, strengthening effective leadership, establishing inclusive policies and building better partnerships in policy‐making, action points are identified at local, regional and national levels. The paper also promotes the value of the Academy method itself as a vehicle for promoting strategy implementation, describing an enhanced role for selected universities in supporting informed change.
Joanna Fox and Irine Mano
Gender inequality and age discrimination persist in the Higher Education (HE) sectors. The significance of gendered health at middlescence, including peri/menopause, is often…
Abstract
Purpose
Gender inequality and age discrimination persist in the Higher Education (HE) sectors. The significance of gendered health at middlescence, including peri/menopause, is often negated. This article explores women’s lived experiences of gendered health issues at middlescence in the neoliberal academy through an intersectional lens.
Design/methodology/approach
Two female academics engaged in dialogic narrative using duoethnography addressing their experiences of gendered health issues in a UK Higher Education Institution (HEI). They recorded intentional written reflections and met to explore their experiences over a four month period. Thematic analysis was applied to analyse their responses.
Findings
Both women considered how they self-advocated for their own care at the stage of middlescence whilst seeking health support and in accessing accommodations in the HE workplace. This process impacted on the construction of their professional identity and on their self-concept as social work academics at the dynamic intersection of age, gender, ethnic, social and professional status.
Originality/value
This article uniquely foregrounds two female academics’ lived experiences of middlescence in a UK HEI conceptualised through an intersectional lens. Their experiences are explored in the context of gendered age discrimination in HE sectors that are perpetuated through masculinized forms of career progression and management. The concept of the ideal academic, a white male, unencumbered by domestic responsibilities, is contested through consideration of care ethics. We acknowledge that forms of epistemic injustice silence women’s narratives in the neoliberal academy but highlight recommendations to enable their stories of gendered health discrimination to be heard.
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Across Europe, national governments have moved to implement policies which deal exclusively with autistic people, indicating a reframing of autistic people as needing something…
Abstract
Across Europe, national governments have moved to implement policies which deal exclusively with autistic people, indicating a reframing of autistic people as needing something additional to or different from existing disability policy. In England, a clear and positive reframing of autistic people as having the potential to solve the problems they face when given the right support is evident in national autism policy. This can be linked to the actions of a group of self-advocates who sit on policy decision-making bodies.