Non-attendance for health care: When rational beliefs collide

Some patients choose not to attend for health care despite health concerns or an opportunity for improved health. Social norms that privilege professional expertise, and good health, deem this choice irrational. However, this paper explores how a particular version of rational choice theory suggests ‘positive choices’ for such non‐attendance. These are cognitive and subjectively rational decisions, which are made freely with potentially positive consequences and are not social problems if respect for personal autonomy trumps obligations to others. Specifically, Boudon's ‘cognitivist theory of action’ is used to conceptualise non‐attendance as both a rational and irrational choice, from different perspectives. Because the perspective of non‐attendees has been marginalised, the paper also suggests a typology of instrumental and non‐instrumental ‘strong reasons’ for rational non‐attendance. This may help groups such as professionals to understand and accept that non‐attendance can be subjectively rational, without relinquishing their own perspective that it is irrational. Acceptance of the defensibility, if not the rightness, of the perspective of non‐attendees is needed to show respect for non‐attendees' moral agency and to begin to repair relationships with these individuals, who may seek help from health professionals in the future.     

The empowerment of marginals: strategic paradoxes

This article is about the disability movement in the Netherlands and its strategies for empowerment of disabled people. Only since the end of 2003 has the Netherlands enjoyed anti‐discrimination legislation for disabled people. But, how important actually is legislation for the empowerment of disabled people? To answer this question, we take a closer look at social movements and their involvement in empowerment and active citizenship. We criticise the disregard of differences and care in notions of active citizenship and propose instead the idea of a ‘varied society’ based on the notions of diverse and ‘careful citizenship’. One of our main arguments is that empowerment strategies necessary to create this kind of society are above all bottom‐up strategies. However, the highly organised disability movement in the Netherlands is confronted with strategic paradoxes that have ‘de‐powering’ consequences. Based on these paradoxes, five recommendations for the disability movement in the Netherlands are presented.     

Notions of self: lived realities of children with disabilities

To research children’s notions of self, semi‐structured interviews, drawings and focused group discussions were used with 14 children with mobility ‘impairments’ aged 11–16 years. The objective was to capture children’s ‘lived realities’. Findings illuminated immense variation and fluidity in children’s understanding of ‘disability’. Children desired to appear similar to ‘non‐disabled’ children. Most attributed ‘disability’ to existential causes. Parents’ ambivalent attitudes and societal reactions to ‘disabled’ children are discussed. The study points out the unremitting hope and potential of these children, which is often silenced by the overarching ‘negativism’ that surrounds ‘disability’.     

(Visual) Disability – from exclusive perspectives to inclusive differences

By introducing the concept ‘inclusive differences’ of disability this paper suggests that disability is the outcome of historically specific, embodied human and non‐human configurations fabricated within the conduct of everyday life. Inclusive differences question the attempt given by exclusive perspectives that try to divide analytically, conceptually or politically ‘disability’ a priori into an individual (natural) bodily impairment or a purely socio‐cultural attributed disability. Applying the concept of inclusive differences, neither the domain of ‘nature’ nor ‘society’ can function as a disability’s self‐explanatory force. Rather, inclusive differences highlight the connection between human and non‐human relations that make up the different enabling and/or disabling scenarios of societal realities. Drawing on the practices of blind people in a visual culture this paper discusses related specificities of inclusive differences.     

Children’s conceptions of the word ‘disabled’: a phenomenographic study

The aim of this study was to investigate the qualitative differences in children’s conceptions of the word ‘disabled’. Two hundred and thirty children, aged 7–12 years of age, were instructed to make a drawing of what came into their minds when they heard the word ‘disabled’. A brief written commentary on their drawing was also requested. The drawings and comments showed that the children had a positive attitude towards the word ‘disabled’. They drew and commented that a disability had medical causes, a technical device was a prerequisite for disabled people, a disability had social consequences and that a disabled person needed support. The children also explained that there were obstacles which impaired disabled people’s performance of activities. Access to some environments and being an active part of society was limited for some disabled people.     

Staff responses to age‐related health changes in people with an intellectual disability in group homes

The purpose of this study was to explore how supervisors in group homes caring for people with intellectual disability responded to the development of age‐related health changes in their residents. Ten group home supervisors working in the disability sector were interviewed once. Data were analysed using Dimensional Analysis. The study identified several factors related to whether a resident could stay ‘at home’ or would need to be moved to residential aged care (nursing home) including: nature and extent of group home resources, group home staff comfort with residents’ health changes, staff skill at navigating the intersection between the disability and ageing sectors, and the supervisor’s philosophy of care. The ability of older people with an intellectual disability to ‘age in place’ is affected by staff knowledge about and comfort with age‐related illnesses, staff skills at navigating formal services, staffing flexibility, and the philosophy of group home supervisors. Despite the growing international concern for the rights of people with disability, particularly in relation to decision making, questions about the older person’s choice of residence and participation in decision making about what was best for them, were almost nonexistent. Rather, decisions were made based on what was considered to be in ‘the best interest’.     

Voyaging on the seas of spirit: an ongoing journey towards understanding disability and humanity

In an important article in Disability & Society Hughes argued that ontology is becoming a ‘live issue’ in disability studies. Different sources, including non‐western and aboriginal conceptions of disability and cosmology and the literature on philosophy, religion, palliative and healthcare, suggest that we are missing a critical aspect of humanity in our discussions – the spirit. Drawing upon collectively defined or interpreted experiences of disability identified in non‐Western and aboriginal communities we identify gaps in our ontological discussions which result from taken for granted assumptions that there is only individual experience. When we incorporate spirit in our thinking we become open to emerging ways of understanding disability and humanity. Spirit is a critical, although often intangible, aspect of being alive. Drawing on these sources, ontological discussions around disability leads us to explore how experiences of disability teach us about the multiple dimensions of being human.     

Repositioning mothers: mothers,disabled children and disability studies

In this article we set out to review the ways in which mothers of disabled children have been portrayed within disability studies and the more broader academic literature. We argue that within disability studies mothers of disabled children occupy a liminal position because they are often not disabled and yet they can experience forms of disablism. Their experiences can differ markedly from the experiences of mothers of non‐disabled children and yet the consequences and outcomes of these experiences, such as developing a ‘special competence’ is largely overlooked. Mothers can work to effect change on behalf of their children and, in some cases, for disabled people more generally, however, this role of activist mother is largely undervalued. The review of literature presented here leads us to conclude that further research needs to be undertaken exploring and highlighting the ways in which mothers of disabled children negotiate, manage and approach their daily lives, operating within what are described by feminist scholars as oppressive mothering ideologies and disabling environments.     

Of pain,passing and longing for music

Despite musicology’s historic veneration of ‘tragic’ (mostly physically or mentally impaired) artists, disability studies is still a new and controversial field in music scholarship. This essay addresses the recent emergence of disability studies in music scholarship from the perspective of a non‐visibly disabled musician and researcher. It examines the internal dissonance of passing as pain‐free and non‐disabled, the limitations of focusing on visible difference in musical performance and the complexities of performance where impairment, damage or pain is aurally evident, connecting the listener to the performer’s body. It calls for the study of musical bodies in all their manifestations, using pain and disability as analytic constructs.     

Migration,development and inequality: Eastern Punjabi transnationalism

Abstract Drawing on original, ethnographic research in India and the UK, in this article we discuss the impact of transnational activity on the Doaba region of East Punjab, India. We argue that some recent studies have underplayed some of the less progressive consequences of Indian transnationalism. In particular, we contend that they have underestimated the extent of division between transnational migrants and Indian non‐migrants and downplayed the relationship between transnationalism and caste inequality. This empirical study of transnationalism, when placed in the context of the dynamic caste relations of East Punjab, supports those who contend that access to international migration is becoming an increasingly significant component of contemporary global social stratification, with the ‘broad’ transnational processes of capitalist globalization driving the ‘narrow’ transnationalism studied here. In this article, we question any straightforwardly progressive relationship between transnationalism and ‘development’ within East Punjab, and suggest that the arguments presented have a resonance beyond northwest India.     

Becoming ‘Real’ Entrepreneurs: Women and the Gendered Normalization of ‘Work’

This article focuses on the way in which women entrepreneurs legitimate their place in a gendered economy by reifying a divide between ‘real work’ and ‘not‐real work’. Using ethnographic approaches to follow the everyday lives of several women who own and operate small businesses in the USA, our article documents three gendering practices the women use for ‘becoming real workers:’ embodied, spatial and temporal. The study shows that women entrepreneurs become ‘productive workers’ by recasting reproductive work as non‐productive or not‐real work. At the end, we explore two possible alternative conceptualizations of ‘work’ that could contribute to dissolving this gendered divide.     

The ‘animal‐advocacy agenda’: exploring sociology for non‐human animals

This paper focuses on sociology and the study of human non‐human animal relations. Using as a catalyst referees' comments on a previous paper about experiments using non‐human animal subjects, in this present paper three problematics are identified and discussed. These problematics centre on the ‘acceptable’ content of sociological inquiry, the ‘permissibility’ of advocacy‐oriented sociology, and the ‘admissibility’ of non‐human animal‐advocacy to advocacy‐oriented sociology. The three problematics are explored through the lens of reflexive and critical sociology. Two central questions are raised: first, should sociology include the study of non‐human animals and secondly, can sociology advocate for non‐human animals? The paper concludes with an affirmative response to both of these questions. The paper ends by stressing that sociology has so much to offer the study of human non‐human animal relations. Professional sociologists have a key role to play in enabling this work to move from margins to centre in published sociology.     

In search of disability rights: citizenship and Turkish disability organizations

Criticizing modern citizenship’s emphasis on the ‘nation’ as a homogeneous body of citizens, recent citizenship conceptions draw attention to diverse group identities and their differentiated rights‐claims. By way of scrutinizing different disability organizations, this paper analyzes the struggles by people with disabilities in Turkey and examines whether these could be perceived as claims to new forms of citizenship. It argues that due to the institutional, political, cultural and historical specificities of Turkey, most non‐governmental organizations maintain relations of patronage with state actors. Far from initiating a rights‐based discourse, their activities cannot be perceived within recent citizenship frameworks. Yet, parallel to Turkey’s accession process to the EU and technological developments, alternative forms of organizing started emerging at the virtual level. These are the harbingers of a relatively more rights‐based discourse.     

The dynamics of support over time in the intentional support networks of nine people with intellectual disability

This paper describes the dynamics of support observed in the networks of nine adults with intellectual disability, developed by families who had committed to achieving a ‘good life’ for this person. Network members, including the person with a disability, participated in this longitudinal ethnographic study. Three principles that underpinned their work were positive and respectful relationships, mentorship and providing opportunities and expectations. Participants worked actively with other network members to develop higher levels of autonomy and social participation.     

Men in Non‐Traditional Occupations: Career Entry,Career Orientation and Experience of Role Strain

This article explores the experiences of men in non‐traditional occupations. In particular it focuses on the dynamics of career entry, career orientation (namely, a preference for intrinsic or extrinsic rewards) and the possible existence, nature and consequences of role strain. Four occupational groups are examined: nurses, cabin crew, librarians and primary school teachers. The results suggest that men fall into three main categories: seekers (who actively chose the ‘female’ occupation), ‘finders’ (who did not actively seek a non‐traditional career but who found the occupation in the process of making general career decisions) and settlers (who actively chose the occupation, often as a result of dissatisfaction with a more ‘masculine’ job, and who then settled in their non‐traditional career). Settlers, in particular, are associated with a more intrinsic career orientation and express a desire to remain close to occupational and professional practice. Role strain is prevalent in men's experiences in their non‐traditional career. The potential sources of such role strain and the implications for career aspirations and career choices are explored.     

The Experience of Academic Non‐Mothers in the Gendered University

In this article we report on data from an empirical study concerned to explore the experience of women academics managing non‐motherhood and work in the gendered university. Although there is a growing body of work on the gendered experience of higher education in general and the experience of mothers as academics in particular, as yet there is little on non‐mothers and work. Drawing on our data we suggest that non‐mothers as well as mothers are affected by the ideology of motherhood and this has consequences for non‐mothers as workers within the academy. In addition to being perceived by students and other staff as ‘natural’ carers because they are women, academic non‐mothers are expected to put in the time and energy that mothers can not. However, as our data demonstrate, non‐mothers often have caring responsibilities outside the institution too. Overall, we argue that non‐motherhood needs to be recognized for the complex identity that it is.     

Gender and Disability in Male‐Dominated Occupations: A Social Relational Model

Evidence from male‐dominated sectors points to high levels of disability and the disabling nature of working environments. However, research of this nature assumes a medical model of disability that does not account for the social construction of disability or the lived experiences of disabled employees. Using data from seven focus groups (n = 44) and semi‐structured interviews with professional transport employees with life‐long hidden ‘impairments’, including dyslexia, dyscalculia, dyspraxia, ADD/ADHD and Asperger syndrome (n = 22), this paper explores the lived experiences of men and women working in a sector traditionally dominated by men, the transport industry. Key themes include homosociality, public–private divide and the impact of changing work practices. Further, the data revealed how those with hidden ‘impairments’ in part construct their identities in relation to both non‐disabled colleagues and those considered stereotypically representing disability (wheelchair users). This study furthers understandings of the relationality of gender and disability in the workplace, and the lived experiences of disabled employees.     

Immigration,trade and ‘ethnic surplus value’: a critique of Indo–Canadian transnational networks

It is often argued that countries hosting large populations of skilled immigrants might benefit from their cultural and economic competencies in the development of international trade networks. Yet, in so doing, the state can be criticized for fetishizing the ethnic immigrant in market terms in order to extract ‘ethnic surplus value’. In this article, I examine these debates empirically in the case of India–Canada immigration and trade using interviews with traders, officials and immigrant entrepreneurs in British Columbia, Canada. Findings suggest that the supposedly positive relationship between trade and immigration is not obvious in the India–Canada case and there is no convincing evidence of the state managing successfully to extract ‘ethnic surplus value’. Rather, what appears most compelling is evidence of what can be termed a discourse of regional disadvantage circulated by immigrant and non‐immigrant business actors alike regarding the nature of India–Canada relations. Interview respondents link this discourse of disadvantage to the regional history of Indian immigration to Canada, which has traditionally comprised Sikhs from rural Punjab, and it functions to essentialize Indian immigrant ethnicity spatially within both the Indian and Canadian contexts. I focus on the theme of the extraction of ‘ethnic surplus value’ and regional disadvantage to reveal the limitations of both arguments about the economic nature of immigrant‐led network development. In both cases, I challenge these ideas with a critical emphasis on the role of immigrant agency and offer a more nuanced and complicated reading of the role of the state. As a result, I offer a detailed reading of how socio‐spatial immigrant networks are formed and operate at the regional scale, and how this complicates more abstract theoretical formulations regarding the trade and immigration nexus.     

Institutions and Policies for Pro‐poor Agricultural Growth

Global experience with pro‐poor growth and empirical work spanning India, Malawi and Zimbabwe demonstrates the importance of agricultural growth for poverty reduction in poor rural areas, while also pointing to the need for complementary non‐farm sector growth. Theoretical arguments, historical evidence and livelihoods modelling in poor medium‐potential rural economies suggest that, contrary to thinking dominating much of current development policy, subsidies to relieve critical seasonal credit and cash restraints and reduce market and input supply uncertainties need to help in ‘kick‐starting’ agricultural markets if increased smallholder productivity in food‐grains is to drive rural non‐farm growth. Establishing the base conditions for these to work, designing and implementing them to be effective, and then phasing them out are major challenges facing policymakers.     

Harried by Harding and Haraway: student–mentor collaboration in disability studies

Exploring the friendships of disabled youth in forthcoming doctoral research raised many unsettling questions. Members of academic and disability communities thoughtfully asked how the researcher could legitimately understand, interpret and represent the experiences of disabled youth. The initial impulse was to rely on nearly two decades of clinical practice with children and youth with disabilities; however, the futility of this strategy quickly surfaced. Uncertainty about how to proceed arose. A colleague and mentor suggested that a careful reading of Sandra Harding, Donna Haraway and Mats Alvesson and Kaj Sköldberg might provide the conceptual tools required to address these concerns. This paper presents a student’s stumbling, hesitant and sometimes ‘harried’ attempts to grapple with their unfamiliar arguments while simultaneously exploring tentative connections with disability studies. The evolutionary cycle of queries, responses and reflections from a series of e‐mails demonstrate a transition in thinking about research and representation.