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"Autism is me": an investigation of how autistic individuals make sense of autism and stigma

BOTHA, Monique
DIBB, Bridget
FROST, David M
2020

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There are many different perspectives for understanding autism. These perspectives may each convey different levels of stigma for autistic individuals. This qualitative study aimed to understand how autistic individuals make sense of their own autism and experience the stigma attached to autism. The study used critical grounded theory tools. Participants (N1⁄420) discussed autism as central to their identity, and integral to who they are. While participants thought of autism as value neutral, they expressed how society confers negative meanings onto autism, and thus, them. The findings also indicate that different understand- ings of autism confer different levels of stigma. Participants expressed constant exposure to stigma and managed this stigma in different ways. Such methods included reframing to more positive understandings of autism, the reclamation of language, and using concealment and disclosure stra- tegically. The implications of these findings are discussed further in the article.

Understanding paid support relationships: possibilities for mutual recognition between young people with disability and their support workers

ROBINSON, Sally
GRAHAM, Anne
FISHER, Karen R
NEALE, Kate
DAVY, Laura
JOHNSON, Kelley
HALL, Ed
2020

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The quality of paid relationships is key for effective support, yet little is known about how people receiving and providing sup- port understand and experience the relationship. This paper reports on recent research that explored the role of relationships with paid support workers in strengthening the rights and well- being of young people with cognitive disability in Australia. The research used photo-rich participatory methods with 42 pairs of young people and their support workers and drew on Honneth’s recognition theory to specifically explore experiences of being valued, respected and cared about in their work together. The findings point to the importance of these con- nected aspects of recognition in paid support relationships, highlighting both the presence and absence of these, as well as experiences of misrecognition. The implications of recognition for strengthening support need close consideration in an inter- national context characterised by personalisation of support, resource constraints and inquiries into poor practice.

Fragmented yet together: the disability movement in Sierra Leone

VAN DEN BRINK, Amélie
ELBERS, Willem
IBRAHIM, Aisha Fofana
2020

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The on-going struggles of disability movements worldwide have been examined from multiple perspectives. As of yet, however, research into this topic has largely overlooked experiences on the African continent. This article seeks to address this gap by presenting a case study of the disability movement in Sierra Leone, West Africa. The study finds that on the one hand the Sierra Leonean disability movement is fragmented (referring to the tendency of groups to work individually as opposed to operating in a collective manner), thus limiting synergy. Three main ‘centrifugal’ forces underlying fragmentation are identified: resource scarcity, impairment specific interests and capacity differences between impairment types. On the other hand, the movement somehow manages to survive and even achieve modest successes. The research shows that interdependence, shared experiences of marginalization, and a clear identification of the ‘other’ have a unifying effect.

  • The disability movement in Sierra Leone is fragmented, meaning it struggles to formulate a unified position and act collectively, yet somehow survives and even manages to achieve some successes;
  • The fragmentation is fueled by competition between groups, a hierarchy between impairment types and interests that are impairment specific.
  • The movement is kept together by mutual dependence to achieve key goals and raise funds, shared experiences of marginalization and negative experiences with ‘outsiders’.
  • The research offers recommendations to disability groups and donors to mitigate fragmenting forces while strengthening unifying forces.

An observation study of power practices and participation in group homes for people with intellectual disability

SVANELÖV, Eric
2019

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This study explored how participation constitutes and is constituted by practices of power in group homes for people with intellectual disability. The study used disciplinary power as theoretical perspective and was based on 50 h of observation in two group homes with a total of 15 residents. The analysis identifies practices of power and their relationship to individual agency and participation. The results show that institutional structures construct practices of power that define codes of conduct for the group home residents and their possibility for participation. This study offers implications for the daily lives of residents in group homes for people with intellectual disability.

Critique of deinstitutionalisation in postsocialist Central and Eastern Europe

MLADENOV, Teodor
PETRI, Gabor
2019

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In this paper, we explore critically deinstitutionalisation reform, focusing specifically on the postsocialist region of Central and Eastern Europe (CEE). We argue that deinstitutionalisation in postsocialist CEE has generated re-institutionalising outcomes, including renovation of existing institutions and/or creation of new, smaller settings that have nevertheless reproduced key features of institutional life. To explain these trends, we first consider the historical background of the reform, highlighting the legacy of state socialism and the effects of postsocialist neoliberalisation. We then discuss the impact of ‘external’ drivers of deinstitutionalisation in CEE, particularly the European Union and its funding, as well as human rights discourses incorporated in the UN Convention on the Rights of Persons with Disabilities. The analysis is supported by looking at the current situation in Hungary and Bulgaria through recent reports by local civil society organisations. In conclusion, we propose some definitional tactics for redirecting existing resources towards genuine community-based services.

Gender, sexuality and relationships for young Australian women with intellectual disability

O’SHEA, A
FRAWLEY, P
2019

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Gender has often been overlooked in the lives of people with intellectual disability, resulting in a limited understanding and service response. This is in part due to a lack of knowledge about the way people with intellectual disability negotiate and build a gendered identity. In this article we present research undertaken with six young women with an intellectual disability who worked with the first researcher to co-develop some stories from their lives. We show how, facilitated by an innovative method which focused on meaningful engagement, the women told stories of richly gendered lives and subjectivities. Their stories showed how gender can be a desired and productive subjectivity, and how consideration of gender can help to identify resistance and agency in their lives. Their stories illustrate how gender is necessary in forming a comprehensive understanding of the lives of women with intellectual disability.

‘Whose agenda? Who knows best? Whose voice?’ Co-creating a technology research roadmap with autism stakeholders

PARSONS, Sarah
YUILL, Nicola
GOOD, Judith
BROSNAN, Mark
2019

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Technologies play vital roles in the learning and participation of autistic people and yet have mostly been conceptualised according to a medical model of disability. In this stakeholder review, the comments of 240 participants from a two-year seminar series focusing on autism and technology were analysed to co-construct an understanding of how research could develop more inclusively. Our socio-cultural analysis shows that stakeholders were very positive about the roles that technologies can play in many areas of life, but that these technologies need to be developed and evaluated according to the needs and preferences of autistic people and their families. We propose an inclusive common social framework for research based on the core themes of social inclusion, perspectives, and participation and agency. Such a framework requires the field to recognise that some current practices are exclusionary and that a commitment to action is needed in order to make positive changes.

Disability, socialism and autonomy in the 1970s: case studies from Denmark, Sweden and the United Kingdom

RYDSTRÖM, Jens
2019

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n the 1970s, grassroots disability movements in many countries changed the thinking around disability and disability politics. Nonetheless, they were also part of larger political upheavals in the western world. How were they inspired by the socialist, feminist, and gay and lesbian movements? In addition, how did they relate to non-disabled allies? Organisations in Denmark and Sweden are investigated and compared to early disability-rights movements in the United Kingdom. Independently of each other, all groups developed materialist models, although only in Sweden and the United Kingdom did this lead to a linguistic distinction between ‘impairment’ and ‘disability’. Danish activists would rather use provocative language, while developing a social understanding of disability. They were also the only ones to discuss gender and sexuality. There are more similarities than differences between the movements, although the Danish specificities contributed to improvements in how Danes with disabilities can develop a positive sex life.

  • In the 1970s, new political ideas grew about ways of living, equality between the sexes, gay and lesbian rights, and sexual freedom. New groups started to talk about how to understand disability.
  • This article investigates whether the new disability groups in Denmark and Sweden talked about these ideas and whether they involved non-disabled people.
  • Danish and Swedish disability groups are compared to early disability rights organisations in the United Kingdom. The Danish and Swedish disability groups were more open to non-disabled members than groups in the United Kingdom.
  • The article also found that the Danish group discussed sexuality a lot. In Sweden and the United Kingdom, the disability groups did not talk about sex at all.

Alternative spaces of failure. Disabled ‘bad boys’ in alternative further education provision

JOHNSTON, Craig
BRADFORD, Simon
2019

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This article draws from an ethnographic study of a group of school-aged disabled white working-class and self-proclaimed ‘bad boys’ in one Alternative Provision (AP) in an English further education college. These young disabled students’ disabilities contribute to the formation of their revalorised – yet stigmatised – identities. Stigma also facilitates the governance of their educational careers. The article considers how this group understands its precarious existence in and beyond AP and how these young men resist the conditions of their devaluation. Despite multiple, stigmatising experiences, the article shows how they appropriate space and (social) capital, often in tension with other students and college staff. The article suggests that there are questions about AP as an appropriate means to confer value upon young disabled students.

  • White, disabled, working-class male students are increasingly placed into Alternative Provisions intended for young people who would otherwise not receive suitable education for various reasons. The experiences of such students have received limited research attention.
  • This article is based on research conducted with young people who attend a provision located within an English further education college. The research found that these young people experience a lack of support, low trust and disregard from peers and some professionals at a crucial time in their educational careers.
  • It is important to understand disability in relation to other social differences – social class and gender, for example – as the combined impact of these in educational settings may undermine future career prospects and life chances.
  • The article emphasises the importance of education practices that develop reciprocity, trust and cooperation in improving the often oppressive circumstances young disabled people face in post-school settings.

Provocations for Critical Disability Studies

GOODLEY, Dan
LAWTHOM, Rebecca
LIDDIARD, Kirsty
RUNSWICK-COLE, Katherine
2019

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This article posits a number of provocations for scholars and researchers engaged with Critical Disability Studies. We summarise some of the analytical twists and turns occurring over the last few years that create a number of questions and concerns. We begin by introducing Critical Disability Studies; describing it as an interdisciplinary field of scholarship building on foundational disability studies theories. Critical Disability Studies scholarship is being produced at an exponential rate and we assert that we need to take pause for thought. We lay out five provocations to encourage reflection and debate: what is the purpose of Critical Disability Studies; how inclusive is Critical Disability Studies; is disability the object or subject of studies; what matters or gets said about disability; and how can we attend to disability and ability? We conclude by making a case for a reflexive and politicised Critical Disability Studies.

Disabled men with muscular dystrophy negotiate gender

ABBOTT, David
CARPENTER, John
GIBSON, Barbara E
HASTIE, Jon
JEPSON, Marcus
SMITH, Brett
2019

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Disability is often portrayed as a one-dimensional category devoid of further intersections. Work which has addressed the intersection of disability and male gender has rarely considered different types of disability or impairment, or foregrounded the experiences of disabled men themselves. This article is based on empirical work carried out in England with men who have Duchenne muscular dystrophy (DMD). We explored with participants their sense of themselves as men and their commonalities and differences with other men. Findings suggest that men with DMD claim, reject and redefine what it meant to them to be men. Doing gender was often heavily reliant on the availability and permission of others. Our study highlights the usefulness of exploring gender with men with particular experiences of disability and of looking at how this might change over a life course, especially when the nature and extent of the life course is a precarious one.

The ‘compliant’, the ‘pacified’ and the ‘rebel’: experiences with Swiss disability insurance

PIECEK, Monika
TABIN, Jean-Pierre
PERRIN, Céline
PROBST, Isabelle
2019

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Switzerland’s social policies in the field of disability have been significantly reshaped over the last two decades by reducing the number of allowances awarded and by increasing the recourse to vocational rehabilitation measures. What stances do individuals who experience the implementation of these policies adopt? What kind of tests are they subjected to? How can we explain the posture they adopt – be it ‘compliant’, ‘pacified’ or ‘rebellious’ – when facing the (re)assignations of their identity and professional status? Drawing on interviews conducted with individuals who have recently been involved in programmes set up by Swiss disability insurance, we highlight their uncertainties and concerns relating to their place in society, as well as their reactions to disability insurance’s interventions.

‘We create our own small world’: daily realities of mothers of disabled children in a South African urban settlement

VAN DER MARK, Elise J
CONRADIE, Ina
DEDDING, Christine W M
BROERSE, Jacqueline E W
2018

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Parents of disabled children face many challenges. Understanding their experiences and acknowledging contextual influences is vital in developing intervention strategies that fit their daily realities. However, studies of parents from a resource-poor context are particularly scarce. This ethnographic study with 30 mothers from a South African township (15 semi-structured interviews and 24 participatory group sessions) unearths how mothers care on their own, in an isolated manner. The complexity of low living standards, being poorly supported by care structures and networks, believing in being the best carer, distrusting others due to a violent context, and resigning towards life shape and are shaped by this solitary care responsibility. For disability inclusive development to be successful, programmes should support mothers by sharing the care responsibility taking into account the isolated nature of mothers’ lives and the impact of poverty. This can provide room for these mothers to increase the well-being of themselves and their children.

Austerity and the lives of people with learning disabilities. A thematic synthesis of current literature

MALLI, Melina Aikaterini
SAMS, Lara
FORRESTER-JONES, Rachel
MURPHY, Glynis
HENWOOD, Melanie
2018

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The Financial Crisis of 2008 resulted in many western economies implementing cuts in health and social care. This systematic review provides a holistic picture of the impact of austerity policy on the lives of people with learn- ing disabilities (LD) and the collateral effects on the people who support them. Our review suggests that in the current climate of economic austerity, available funding to support people with LD is no longer aligned to their care needs. Cuts in disability services have adversely affected the well- being both of people with LD and their informal carers. Individuals with LD have lost social support and are experi- encing increased social isolation. Heightened demands on family carers’ time have negatively influenced their wider roles, including parental functioning, and labour market participation. Our review provides the foundations for fur- ther discourse and research on the effects of austerity on people with LD and their family carers.

Tensions and unity in the struggle for citizenship: Swedish disability rights activists claim ‘Full Participation! Now!’

SÉPULCHRE, Marie
2018

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This article analyses the claims of contemporary disability rights activists mobilising in a context where de facto second- class citizenship co-exists with legal and political declarations about the rights of disabled people. As an empirical case, it focuses on the blog ‘Full Participation.Now’, which was initiated by disability rights activists in Sweden. Drawing upon citizenship research, the article points to the tensions and dilemmas featuring the bloggers’ demand for participation and equality, as well as the challenges relative to their struggle. Although the bloggers formulate contrasting arguments, the article highlights that the activists share a common aspiration for ‘full citizenship’.

Disability inclusive elections in Africa: a systematic review of published and unpublished literature

VIRENDRAKUMAR, Bhavisha
JOLLEY, Emma
BADU, Eric
SCHMIDT, Elena
2018

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The United Nations Convention on the Rights of Persons with Disabilities underscores the equal right of persons with disabilities to participate in political life. However, in Africa they are often unable to exercise their right to vote. This study sought to systematically review available evidence on inclusive elections in Africa. Findings showed that although most African countries ratified disability-focused legislation and proclaimed equal opportunities, the implementation of the legislation varies across the continent. Barriers to political participation can occur at any electoral stage and can be broadly categorised into three groups: lack of education and financial resources; stigma and negative social attitudes; and inaccessible physical infrastructure.

The nation’s body: disability and deviance in the writings of Adolf Hitler

BENGTSSON, Staffan
2018

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This article takes its starting point in the Nazi ideology as it appears in the writings of Adolf Hitler, and discusses how disability and the body can be understood in the context of Mein Kampf. The article underlines how disability and bodily infirmities, alongside race, featured significantly in Hitler’s demagogic message. Although the overall image of disability was related to a sense of threat – and a culture gone wrong – Mein Kampf also contains a mixed interpretation of disability as a phenomenon, in which different and opposing disability narratives took part in the construction and the image of the body as a national property.

Feeling disability: theories of affect and critical disability studies

GOODLEY, Dan
LIDDIARD, Kirsty
RUNSWICK-COLE, Katherine
2017

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This paper explores connections between affect studies and critical disability studies. Our interest in affect is sparked by the beginnings of a new research project that seeks to illuminate the lives, hopes and desires of young people with ‘life-limiting’ or ‘life-threatening’ impairments. Cultural responses to these young people are shaped by dominant discourses associated with lives lived well and long. Before commencing our empirical work with young people we use this paper to think through how we might conceptualise affect and disability. We present three themes; ontological invalidation in neoliberal-able times; affect aliens and crip killjoys; disability and resistant assemblages.

The grace of motherhood: disabled women contending with societal denial of intimacy, pregnancy, and motherhood in Ethiopia

TEFERA, Belaynesh
VAN ENGEN, Marloes
VAN DER KLINK, Jac
SCHIPPERS, Alice
2017

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This study aimed to provide better understanding of intimacy and marriage, pregnancy, birth, and motherhood experiences of women with disability in Ethiopia. Qualitative, in-depth, and semi-structured interviews along with personal observations were used to explore the full experiences of participants, as told in their own words. The result of the interviews indicated that relationships and motherhood proved a very rewarding option for women with disabilities. They also expressed their need for intimacy regardless of society’s denial. Challenges identified include negative societal attitudes toward women with disabilities regarding relationship, pregnancy, and child-rearing. Accessibility of health centers in addition to the ignorance and negative attitudes of the physicians are also reported to be major challenges for the interviewees. This study highlights how rewarding the experience of motherhood was for the interviewees and also shows that women with disabilities face challenges at every step of their experiences, because of society’s prejudices toward disability.

A world without Down’s syndrome? Online resistance on Twitter: #worldwithoutdowns and #justaboutcoping

BURCH, Leah
2017

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Presented by actress and comedian Sally Phillips, A World Without Down’s Syndrome has brought important ethical debates regarding prenatal screening into the public domain. By talking to people with Down’s syndrome, family members, and professionals, Sally has presented a nuanced and thorough examination of the type of world we are living in. Following the documentary, Twitter users have continued to engage with debates and have created a resilient platform for challenging public attitudes. This paper explores the ways in which Twitter hashtags have provided a space for such important and long overdue conversations. While it would not be possible to provide a full overview of the topical conversations that the two hashtags have provoked, I aim to focus on some of the most prominent topics. The following, then, will explore the potential of alternative narratives that resist, and disrupt, normative notions of the human using the hashtags #worldwithoutdowns and #justaboutcoping.

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