Qualitative inquiry of sibling relationships: reinforcement of disability devaluation through the exclusion of voices

People with disabilities share a history and culture of marginalization and oppression. In disability studies, disability has been re-defined as an inability or limitation in performance of the roles and tasks expected of individuals within society which excludes people from becoming full participants in social, cultural, and political affairs. Disability research has traditionally been ‘on’ rather than ‘with’ people with disabilities. This article examines how qualitative sibling disability research has been conducted, with a particular focus on the exclusion of people with disabilities.     

Agency in the twenty-first century: the emperor’s new clothes

Ideas about people with disabilities have evolved dramatically since the 1950s – from individuals ‘suffering from illness’ and dependent on others, to today’s credo stressing participation and social inclusion. People with a disability are considered to have capacities and bear responsibility to achieve active citizenship, which is positive in that a person’s capacities are addressed rather than their limitations. The focus on capacities stems from the Independent Living Movement that originated in the 1960s in the USA, advocating self-determination, self-respect and equal opportunities for people with disabilities. They demanded equal access to both the public domain and they requested assistance to enable their participation. As such, their early effort was to strive for agency. This article will explore changing and competing constructions of agency, participation and citizenship.     

Behavioral economics of death and dying decisions: Both rational and irrational approaches

A decision to accept death and forego life-extending medical procedures can be both rational and irrational. This article reviews perspectives on death from the viewpoint of behavioral economics, which relies on psychology as the basis of decision-making in this regard. According to behavioral economics, both the benefits of living and the costs of death should be emphasized so that a person who is thinking about suicide reconsiders that option and, hopefully, changes his or her mind and tries to safeguard life and avoid life-threatening risks. One way to make dying decisions more rational is to write out a living will or advance directives to help doctors understand a patients’ intentions with regard to decisions about dying should they become unable to articulate that intention at some later, critical, life-or-death situation. Living wills and advance directives can therefore reduce the chances of mercy killing or euthanasia, especially in the context of a developing country, especially when life-extending technologies are limited.     

Narratives of ‘mixed race’ youth in South Korea: racial order and in-betweenness

South Korea has long been regarded as a country with a single ethnicity. Honhyeol, which literally means ‘mixed blood’ in Korean, exemplifies this orientation. In recent years, the number of ‘mixed race’ children in the country has been on the rise due to the increase in international marriages, particularly between Korean men and foreign women. Drawing on the personal narratives of 56 youths (aged between 9 and 17) obtained from three essay contests, this article examines how, why, and in which contexts the racial hierarchies of ‘mixed race’ children in Korea are constructed. Narratives of ‘mixed race’ children and their peers show that a ‘hierarchical racial order’ – characterized by a color-coding system that simultaneously operates along the lines of national origin – is channeled into ‘mixed race’ people’s everyday lives, thus shaping their identity constructions.     

‘I couldn’t just entirely be her sister’: the relational and social policy implications of care between young adult siblings with and without disabilities

Research has commonly explored siblings of people with disabilities’ roles in care for their brothers or sisters with disabilities. Social policy has also commonly framed young adult siblings of people with disabilities as ‘young carers’. However, there has been less consideration of the implications of care for the relationship shared between young adult siblings with and without disabilities and of what this may mean for social policy. What do different types of care mean for sibling relationships? What are the relational and social policy implications of care between siblings? Drawing on a qualitative study of 25 siblings with disabilities and 21 siblings without disabilities aged 15–29, this article explores how young adult siblings perceive, talk and act with regard to the different types of care enacted between them. The article identifies how, during young adulthood, some types of care can endanger siblings’ capacity to feel like siblings and discusses ways that young adult siblings talk and act in order to – as best they can – keep their role within the bounds of a normative sibling relationship. The findings are discussed in light of implications for social policy, particularly with regard to seeing siblings of people with disabilities as ‘young carers’.     

Pathologising the victim: law and the construction of people with disabilities as victims of crime in Ireland

Victimologists have for many years explored the construction of identities associated with the ‘victim of crime’, and how certain groups in society are understood as more ‘deserving’ of victim status than others. This paper considers the victim subjectivities ascribed to people with disabilities¹¹ In Ireland, ‘people with disabilities’ is the preferred term to ‘disabled people’.View all notes as victims of crime in Ireland by exploring the legal frameworks that shape their encounters with the criminal justice system. The legislative bricolage that exists is shaped by disjuncture, whereby anti-discrimination measures grounded in people with disabilities’ equal rights to access the justice system sit alongside those that construct them in terms of incapacity. Criminal law overwhelmingly pathologises people with disabilities as crime victims, with impairment dominating their victim status. The paper suggests that notions of victimhood that associate people with disabilities with dependency and passivity will do little to raise awareness of the disabling barriers that characterise their encounters with the criminal justice system.     

Disability terminology and the emergence of ‘diffability’ in Indonesia

The labelling of disabilities in Indonesian society and legislation has changed over time. More recently, the grassroots has used the term difabel to allude to the conceptualisation of ‘differently able’. The persistence of the grassroots in defending the term difabel, while in the UNCRPD ratification era the elites have turned to using disabilitas, alerts us to the power of labels and the role they play. This article provides a critique of the issue of language and the labelling of people with impairments and how it influences the paradigm of policy and service responses, and thereby the future role of differently able people. Given the background on the evolved disability terminology, this article suggests that difabel should also be adopted into broader English usage (i.e. ‘diffability’). Such a term provides a more positive characterisation of people with impairments and reminds us of the importance of emphasising abilities and acknowledging differences.     

The university as developmental space – a case for thinking differently?

Abstract

In recent years, there has been a sizeable increase in young people approaching University Counselling and Well-being Services for support in managing mental health difficulties with one research project suggesting an increase of demand upwards of 33%. Support is necessarily often targeted at those who present most ‘at risk’, but this ignores the potential positive impact that universities can have on promoting mental health for future generations, not least given that nearly half of all young people in the UK participate in Higher Education. Drawing on a case study of one UK undergraduate student, this paper will explore themes common to university students such as difficulties in transitioning from home, defensive-bonding in relationships and low self-esteem. The paper argues the need for universities and colleges to provide ongoing support for students who are ‘just about managing’ in order to enable them to flourish, both emotionally and academically.     

The medicalization of Nonhuman Animal rights: frame contestation and the exploitation of disability

Nonhuman Animal rights activists are sometimes dismissed as ‘crazy’ or irrational by countermovements seeking to protect status quo social structures. Social movements themselves often utilize disability narratives in their claims-making as well. In this article, we argue that Nonhuman Animal exploitation and Nonhuman Animal rights activism are sometimes medicalized in frame disputes. The contestation over mental ability ultimately exploits humans with disabilities. The medicalization of Nonhuman Animal rights activism diminishes activists’ social justice claims, but the movement’s medicalization of Nonhuman Animal use unfairly otherizes its target population and treats disability identity as a pejorative. Utilizing a content analysis of major newspapers and anti-speciesist activist blogs published between 2009 and 2013, it is argued that disability has been incorporated into the tactical repertoires of the Nonhuman Animal rights movement and countermovements, becoming a site of frame contestation. The findings could have implications for a number of other social movements that also negatively utilize disability narratives.     

‘I shouldn’t be living there because I am a sponger’: negotiating everyday geographies by people with learning disabilities

Learning disability policy has for some time been framed by the goal of inclusion which purports to enable people with learning disabilities to lead a ‘life like any other’ person. This article examines the extent to which this is the case in England, by tracing the lived experiences of people with learning disabilities within their communities. The article draws on two interlinked qualitative studies involving interviews that examined their local place-based experiences of inclusion and exclusion. The findings reveal ‘moments of inclusion’ and opportunities for social encounter from peer support, but these were situated amidst wider experiences of exclusion and harassment.     

Young precariat and a new work order? A case for historical sociology

This article assesses Guy Standing's (2011) account of ‘the precariat’ as a ‘new class' to the many exercises undertaken in youth studies since the 1980s to make sense of the changing patterns of youth employment. While Standing's focus on the experience of fragmented and casualized work in many economies which now implicates young people has value, there are significant problems with his account that highlights the some difficulties in thinking in somewhat abstracted ways about ‘structural’ change processes that do not sufficiently consider the question of time. The case of Australia's of labour market regulation since the 1890s is used to test the validity of Standing's focus on the novelty of neoliberalism after the early 1980 to explain the emergence of precarious employment. Standing's claim that insecurity is central to the ‘new precariat’ because they lack the different kinds of security enjoyed by the ‘working-class’ after 1945, highlights the need for an interpretative framework attentive to the longer term role of state policy and the interplay of historical and local processes. The case is then made for developing a historical sociology that engages with what is now happening in respect to young people and their employment security.     

Moral boundaries and national borders: Cuban marriage migration to Denmark

The discussion of marriage migration in Denmark primarily has focused on citizens of immigrant descent (‘New Danes’) who marry partners from their ancestral homeland (often Turkey or Pakistan). This type of marriage migration was the target of the strict Danish family reunification policy instituted in 2002. This article examines the genealogy of the morality underpinning the family reunification policies and asks whether the rules actually promote this moral agenda or have unintended consequences. Empirically, I shift the focus from immigrant Danes to native Danes who marry Cubans. Finally, while little attention is paid to the non-western country involved, transnational marriages always involve two nations. This article investigates how state policies on both ends of this migration trajectory shape moral-territorial borders that transnational couples navigate.     

Poverty and disabled households in the People’s Republic of China: experiences with a new rural health insurance scheme

This article discusses what in international literature has commonly been termed the ‘vicious circle’ of poverty and disability. Our aim is to shed light on recent policies that attempt to break the vicious circle in rural areas in the People’s Republic of China. Drawing on data produced from fieldwork conducted in the Inner Mongolia Autonomous Region, People’s Republic of China, our approach is to explore experiences that households with people with disabilities have had with a newly implemented rural health insurance reform. The introduction of this reform is significant as lack of insurance and high healthcare expenses are currently perceived as crucial to causing poverty in rural China. We show that people with disabilities have been able to access this new insurance. At the same time, as currently practised, the new insurance does not prevent poor households from sinking deeper into poverty when using healthcare services as healthcare expenses increase.     

Survivor research and Mad Studies: the role and value of experiential knowledge in mental health research

The body of knowledge referred to as ‘survivor research’ has grown significantly in recent years, challenging the basis of mainstream mental health knowledge and most recently manifesting in the emerging field of enquiry known as ‘Mad Studies’. The roots of these developments lie in the experiential knowledge of service users engaged in sharing their experiences and knowledge, often through peer support. I aim to challenge some of the assumptions underlying what we think we know about mental health from the mainstream mental health disciplines; and to demonstrate the value of experiential knowledge in helping us to reach a better understanding of mental health and mental distress. This article explores the nature of, and challenges to, mental health knowledge and evidence, drawing on the work of survivor researchers and people contributing to the emerging discipline of Mad Studies.     

‘Some people are not allowed to love’: intimate citizenship in the lives of people labelled with intellectual disabilities

Disability helps us think differently about the ‘ideal’ neoliberal-able citizen who may not equate to ideas of productive, sexual, ‘normal’. Intimate citizenship – our rights and access to intimacy – is often ignored by those working with people labelled with intellectual disabilities and in research. In this article, we discuss the outcome of a dialogue between self-advocates labelled with intellectual disabilities, academics, service providers, Aboriginal leaders, students and artists about intimate citizenship through love, intimate work and consumption.     

Social work field education: believing in supervisors who are living with disabilities

Much of what is written by non-disabled authors about living with disabilities does not mirror people’s experiences or opportunities. Literature is often written about people’s abilities (or disabilities) rather than by or with people. Discourse about supervision of social work students can risk assuming that supervisors are people who do not identify as living with disabilities. This research is a co-operative inquiry into the experience of being an Australian social work student supervisor who is living with disabilities. The article extends the literature about being a social work field educator to include ability, and values the practice wisdom of experienced social workers including a current student supervisor who is living with a disability.     

Do self‐assessment and self‐directed support undermine traditional social work with disabled people?

In recent years, self‐assessment and self‐directed support have become mainstream options within disability services. The Disabled People’s Movement has advocated the need for such change for a long time but this has been persistently resisted by many social workers. In this article, it will be argued that both self‐assessment and self‐directed support undermine traditional social work and that social workers need to begin to work alongside disabled people, rather than ‘for’ disabled people, in order to achieve substantial system change.     

Time to look in/at anger: considerations on the position and policing of young people’s anger

Mental and emotional well-being is steadily overtaking physical difficulty as the biggest health challenge facing young people. As a result, young people’s emotional well-being and needs are a significant concern within contemporary youth studies. However, the intricacies of ‘managing emotion’ have been somewhat neglected in the context of youth studies. In particular, the role of discourses of emotional well-being to produce ‘feeling rules’ [Boler, M. 1999. Feeling Power: Emotions and Education. Florence, KY: Routledge], to discipline, and to restrict expressions of emotion has been unconsidered. This article explores this problematic further with the intention of provoking a larger concentration on relationship between the policing of emotion and youth well-being discourses. Specifically, it focuses on anger as one of the emotions that young people are encouraged to move away from. It outlines how young people’s right to be angry is policed through the construction of angry subjectivities as characterised by incompleteness. It focuses on two – the unresolved subject and the unreasoned subject. Young people, who are already constructed as incomplete, are particularly vulnerable to this policing. Drawing on a range of theoretical interjections on the disciplining of ‘adult’ anger, the article explores the political importance of anger, how it is limited for young people, and the complexities of engaging with anger in the context of youth studies. Given the limited attention anger has attracted in youth studies literature, the article is intentionally provocative. However, as the article notes, this is a complex debate with many challenges and a much more detailed investigation is necessary.     

Football ‘fanzines’ and football culture: a case of successful ‘cultural contestation’*

‘Fanzines’– magazines produced by fans for fans on photocopiers or small presses and circulated by other means than through mainstream commercial channels – provide an alternative to the products of mass publishing and the mass entertainment industry, although often in ‘dialogue’ with these. In England fanzines – like Sniffin’ Glue or When Saturday Comes– have proliferated over the last fifteen years or so, dealing especially with rock and pop music and also, most recently, with football. Fanzines can be seen as enabling a ‘users’ view’ and -sometimes – a radical reinterpretation (or defence) of popular cultural forms to be expressed by people who would otherwise be excluded from any usual means of written expression about, or control over, mainstream institutions in the production of mass culture. This article focuses on the phenomenon of football fanzines (and the Football Supporters’ Association (FSA) – a movement closely associated with fanzines), suggesting (i) that football fanzines and the FSA can be viewed as a particularly potent example of the existence of continued ‘contestation’ over cultural institutions of the kind suggested in relation to sport by Gruneau (1982 and 1983), Donnelly (1988) and others, including ourselves (Jary and Horne 1987 and Horne, Jary and Tomlinson 1987), (ii) that a consideration of football fanzines and the FSA illustrates the value of moving to a wider substantive and theoretical focus in the sociological analysis of football culture than that which has been uppermost in recent years.