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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.

Public health, research and rights: the perspectives of deliberation panels with politically and socially active disabled people

BERGHS, Maria
ATKIN, Karl
GRAHAM, Hilary
HATTON, Chris
THOMAS, Carol
2017

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Public health research purports to provide the evidence base for policies, programmes and interventions to improve the health of a population. However, there is increasing awareness that the experiences of disabled people have played little part in informing this evidence base. This paper discusses one aspect of a study commissioned by England’s National Institute for Health Research (NIHR) to review the implications for public health of theories and models of disability. This part of the study focused on the development of a tool or decision aid to promote ethical inclusion of disabled people in public health randomised controlled trials (RCTs) and evaluative research. The tool was introduced at four regional ‘deliberating panels’ involving politically and socially active disabled people. In addition, we held a panel with public health professionals. The deliberation panels debated how the focus of public health was narrowing, why disability was excluded and positive and negative issues with using rights to guide research and evaluative practice. Politically active disabled people argued for a social model of human rights to guide any rights based tools or decision aids in public health and disability research.

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.

Gendered experiences of physical restraint on locked wards for women

FISH, Rebecca
HATTON, Chris
2017

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Physical restraint is used in inpatient services for people with intellectual disabilities as a way of holding a person to avoid injury. This article uses data from an ethnographic study in a locked unit in the north of England to explore women’s experiences of physical restraint using a feminist disability studies analysis. Data consists of field notes as well as interviews with 16 of the women who had experienced restraint, and 10 staff who worked with them. The women gave insights into the gendered phenomenon of restraint in light of their past experiences of violence. The authors argue that restraint is used with women to encourage passivity at times when more relational and therapeutic methods could be used. The article offers recommendations for alternative strategies that services can encourage.

‘Civilising’ Deaf people in Tibet and Inner Mongolia: governing linguistic, ethnic and bodily difference in China

HOFER, Theresia
SAGLI, Gry
2017

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The People’s Republic of China is home to over 20 million d/Deaf and hard-of-hearing people, many among them belonging to ethnic minorities. Drawing on ethnographic fieldwork in two minority regions, the Tibet Autonomous Region and the Inner Mongolian Autonomous Region, this article comparatively discusses findings on sign language use, education and state welfare policies. The situation in these domains is analysed through the framework of the ‘civilising project’, coined by Harrell, and its impacts on the d/Deaf and hard-of-hearing among ethnic minorities are shown. For instance, through the promotion of Chinese and Chinese Sign Language over and above the use of local sign and written languages as well as through education and the medicalisation of disabilities.

Precarious lives and resistant possibilities: the labour of people with learning disabilities in times of austerity

BATES, Keith
GOODLEY, Dan
RUNSWICK-COLE, Katherine
2017

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This paper draws on feminist and queer philosophers? discussions of precarity and employment, too often absent from disability studies, to explore the working lives of people with learning disabilities in England in a time of austerity. Recent policy shifts from welfare to work welcome more disabled people into the job market. The reality is that disabled people remain under-represented in labour statistics and are conspicuously absent in cultures of work. We live in neoliberal- able times where we all find ourselves precarious. But, people with learning disabilities experience high levels of uncertainty in every aspect of their lives, including work, relationships and community living. Our research reveals an important analytical finding: that when people with learning disabilities are supported in imaginative and novel ways they are able to work effectively and cohesively participate in their local communities (even in a time of cuts to welfare). We conclude by acknowledging that we are witnessing a global politics of precarity and austerity. Our urgent task is to redress the unequal spread of precaritization across our society that risks leaving people with learning disabilities experiencing disproportionately perilous lives. One of our key recommendations is that it makes no economic sense (never mind moral sense) to pull funding from organisations that support people with intellectual disabilities to work.

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