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Introduction
Skills and Expertise
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September 2008 - September 2013
Publications
Publications (71)
Critical youth studies understands contemporary youth transitions as an interplay between long term changes in labour markets and state approaches to welfare and the regulatory presence of societal norms about the ‘right kind’ of transitions and the ‘right kind’ of young adult citizens. This work is intersectional, with emphasis given to class, gen...
In this paper we explore the importance of relationality and care for understanding women’s alcohol use, using a theoretical framework comprising concepts from feminist ethics of care, the sociology of personal life, and feminist approaches to governmentality. A key focus is how care giving responsibilities and expectations in families appear to be...
Our chapter advocates for approaches to patient education that, through collaborative planning and production processes, prioritise both the accuracy of clinical content and attention to patients’ and families’ experiences. We share our professional reflections on a collaborative applied research project we undertook in a healthcare context, in ord...
There has been a marked increase in the active involvement of children and young people in social research. This move is underpinned by rights based arguments that children and young people should have a voice, and that this voice should be listened to. However, concerns have been raised about the appropriateness of children’s and young people’s ri...
The right to a supported independent life is a central dimension to disability politics. This focus has been used to challenge institutionalised living and the exclusion of disabled people from areas such as education and employment. The importance given to independence has also led to a critique of care. This critique has been a point of contentio...
- Puts forward, uniquely, an ethic centered on the family as it pertains to health care, an ethic that is distinct from health care ethics, feminist ethics, or an ethic of care
- Comprises contributions from bioethicists, as well as scholars from fields as diverse as sociology, philosophy, medical sciences, and nursing
- Builds on previous work in...
This chapter seeks to explore some of the complexities involved in recognizing family and draws from a range of work interrogating what is meant by the term. It does so to support the bioethical concern with the importance of relationships to selfhood, of which family is a key form, while also attesting to the politics and risks of such a move. The...
The aim of this collection is to develop new theoretical and practical approaches to address the responsibilities created by new forms of healthcare practice. In particular, the authors examine the significance of people’s key relationships, such as family and community, and how they deliberate and make decisions about their responsibilities. Each...
Recent HCI research has investigated how digital technologies might enable citizens to identify and express matters of civic concern. We extend this work by describing JourneyCam, a smartphone-based system that enables powered wheelchair users to capture video and sensor data about their experiences of mobility. Thirteen participants used JourneyCa...
Human Computer Interaction has developed great interest in the Maker Movement. Previous work has explored it from various perspectives, focusing either on its potentials or issues. As these are however only fragmented portrayals, this paper aims to take a broader perspective and interconnect some of the fragments. We conducted a qualitative study i...
Available evidence indicates that grandparents can play a crucial role in supporting and caring for disabled grandchildren and the entire family unit, yet the lived experiences of grandparenting in this context has received scant attention in research, policy or practice. This study explored grandparents’ perspectives on their role and intergenerat...
Background:
In the last thirty years there has been a rise in harmful alcohol use amongst White British women. Approaches to alcohol harm reduction typically position drinking as an individual behaviour, with an emphasis on people to make changes to and by themselves. Moving away from an individual approach, this paper works with a relational fram...
Children with unexplained problems in their development can be referred to genetics clinics; the number having such referrals is increasing as new technologies enhance the number of genetic variations that can be identified. From the perspective of the child and their family, this raises a number of issues social science research can help us to und...
Visual methods are a popular way of engaging children and young people in research. Their growth comes out of a desire to make research practice more appropriate and meaningful to them. The auteur approach emphasises the need to explore with young participants why they produce the images they do, so that adult researchers do not impose their own re...
The Scandinavian Journal of Disability Research is now an Open Access Journal from this issue onwards. We are particularly pleased that not only new articles, but also our full archive are included in the publishing agreement with Stockholm University Press. To celebrate this turning point in the Journal’s history, we have revisited trends in its d...
In Europe and elsewhere the majority of men and women aged over 50 are grandparents and play a vital role in providing grandchild care.Age, gender, health status, living arrangements, employment and welfare state policies are known to influence grandparental involvement.Available evidence indicates that grandparents can play a crucial role in the c...
Recent HCI research has highlighted the potential afforded by maker technologies for supporting new forms of DIY Assistive Technology (DIY-AT) for people with disabilities. Furthermore, the popular discourse surrounding both the maker movement and disability is one of democratisation and empowerment. Despite this, critics argue that maker movement...
Disabled people are said to experience stigma because their embodied presence in the world does not fit with how others interact and use their bodies to be social participants. In response they can turn to medical procedures, such as surgery or physiotherapy, in order to reshape their bodies to more closely approximate norms of social interaction a...
Digital technologies offer the possibility of community empowerment via the reconfiguration of public services. This potential relies on actively involved citizens engaging with decision makers to pursue civic goals. In this paper we study one such group of involved citizens, examining the evidencing practices of a rare disease charity campaigning...
A crucial contemporary dynamic around children and young people in the Global North is the multiple ways that have emerged to monitor their development, behaviour and character. In particular disabled children or children with unusual developmental patterns can find themselves surrounded by multiple practices through which they are examined. This r...
Diagnosis in paediatric genetics involves a combination of technologies able to display variation in DNA and clinical discussions with families that concentrate on retrieving family histories. This paper explores the significance of the family tales that genetics brings to the fore. Through discussion of an ESRC-funded ethnographic study of familie...
Recent developments in professional healthcare pose moral problems that standard bioethics cannot even identify as problems, but that are fully visible when redefined as problems in the ethics of families. Here, we add to the growing body of work that began in the 1990s by demonstrating the need for a distinctive ethics of families. First, we discu...
Stories about disability are heavily shaped by the narratives offered by medicine and society. Those narratives enact an 'anomalous' body that is constructed as distant from the norm and therefore 'damaged' but also fixable. In this paper we explore how such narratives, and the practices they encompass, influence the stories disabled young people t...
Theoretical work on disability is going through an expansive period, built on the growing recognition of disability studies as a discipline and out of the political and analytical push to bring disability into a prominent position within accounts of the intersecting social categories that shape people's lives. A current debate within critical disab...
Paediatric genetics involves multiple visually based diagnostic processes. While examining the external features of a child plays an important role, of increasing importance are biochemical analyses of blood, which produce digital diagrams that display variations in the shape and composition of chromosomes. The level of magnification and detail tha...
Background: The American College of Medical Genetics recently suggested microarray testing should be a first tier investigation for children with ASD. However, genetic testing in ASD is contentious; some people believe testing is helpful, whilst others have major concerns about the potential clinical implications and applications. Little is known a...
Pediatric genetics is growing in significance as a tool to explain childhood illness and disability. Within both medical sociology and anthropology writers have explored whether investigating genetic inheritance can overemphasize biological connection over other versions of kinship and can also lead to new forms of responsibility being imposed on p...
Paediatric genetics is increasingly playing a role in explorations of why a child may not be reaching developmental milestones, while experiencing various health concerns and displaying unusual physical characteristics. The diagnostic processes include close analyses of a child's body in order to identify 'clues' to possible genetic variation. When...
British feminists have long argued that welfare policies in the UK rely on gendered assumptions about care responsibilities, which maximize the role of women as carers while minimizing the role of the state (Graham 1983; Lewis 1992; Ungerson 1987; 1990). The introduction of community care in the UK in the early 1990s is one such example of a shift...
Recognition lies at the heart of multiple contests around citizenship rights, identity politics, claims for material redistribution and demands for past harms to be acknowledged and redressed. Our view is that this is an opportune time, perhaps a necessary time, to think through the contemporary dynamics around recognition found in various contests...
In the UK, there is a growing recognition of the need to include children's accounts in research on paediatric health care. This paper seeks to examine ways in which children have been included in health-related studies to identify strengths and weaknesses.
Key empirical based studies were identified via comprehensive searches of academic literatur...
This paper explores the impact of a new IT system on the knowledge claims and occupational boundaries made by professional groups within a hospital laboratory setting. Within organizational settings professional groups enjoy considerable power and status through the specialised knowledge claims they make, deploying a variety of material and discurs...
There are many debates in the social sciences about the certain and uncertain nature of subjectivity and knowledge. Often these debates create competing theoretical camps, each hell bent on refuting the other (materialist—idealists; modernist—postmodernists; structuralists—post-structuralists; medical—social). These critiques often fail to engage w...
We were conscious from the outset that parents of disabled children, especially very young or poorly children, demand forms of respect that go way beyond the normative ethical criteria of consent, withdrawal and anonymity. Research design required reciprocity, mutuality and the development of practices which sought to place decision making about pa...
The previous chapters have highlighted disability discourses, across familial, institutional and community settings, that position disabled children and their families in exclusionary and inclusive ways. We have also shown how families respond in creating alternative discourses and practices to those normatively associated with the marginalisation...
This admission by a social researcher and parent of a disabled child starts to convey the complex ways in which parents seek to define their lives with their children. This chapter aims to do justice to the complexity of parental affiliations and identities. In writing this chapter we were conscious of Read’s (2000) and Ryan and Runswick Cole’s (20...
In this chapter we will briefly provide an overview of the research project, upon which this book draws, in order to consider issues of theoretical background, ethics, methodology and analytical frameworks. In Chapter 3 we turn to some of the relational processes and stories of the research. The research team worked with families of disabled childr...
This chapter explores the different ways in which parents and their disabled children populate community contexts, including distant and close networks of support, friendships, virtual networks, the extended family, leisure spaces and institutions. Communities are understood as complex and shifting phenomena that parents respond to and, in many way...
Unmaking children refers to ways in which ‘normal’ narratives of childhood come apart when something about a child is read as out of place with the ‘normal’. Disability contributes to the disintegration of expected narratives of childhood; it ‘disrupts taken-for-granted assumptions about the mind and body’ (Kelly, 2005: p. 181). Unmaking such narra...
In Chapter 1 we highlighted the criticisms that have been made by disability studies and others, of the dominance of professional authority over the lives of disabled people. Changes in both society and government regulation, over several decades, have sought to undermine such authority and replace it with different models of how welfare organisati...
In Chapter 1 we highlighted feminist work on the gendered division of labour, particularly, within the home. Feminists in the 1980s attributed the dominance of women in the caring role to societal constructions of gender and family role, and identified these constructions as a major barrier to women’s full participation in the public sphere (Baldwi...
This chapter identifies a number of theoretical orientations and emphases that shape the arguments of this book. The orientations include critical disability studies, feminisms and critical community psychology. The emphases illuminate a number of key relational, social, identity and cultural nodes of analysis. We develop these interconnections thr...
Since Gilligan first interpreted women's moral position as an ethic of care, feminists have wondered what this means for political action. While some view it as a way of introducing forms of understanding and appreciation which are missing in the public sphere, others have worried about the universalisation and romanticization of women's abilities...
Focus groups are an important element of qualitative health research, valued for the forms of knowledge and understanding that emerge from interactions among participants. Common advice for focus groups within health research is to limit the level of variation among respondents to generate comprehensive discussion and shared knowledge. In this arti...
Feminists have put care on the sociological agenda. At times they have defined it as an activity that imprisons women, at other times they have seen it as a value that is marginalised in society and should be celebrated. In contrast disability writers view care as a category that pathologises those who are defined as its recipients and seek to avoi...
The antagonism between some queer and feminist authors is well known. Writers such as Judith Butler (1990), Gayle Rubin (1993), Eve Sedgwick (1990) and Carol Vance (1992) challenge feminist writers, with different levels of hostility, for viewing sexuality only through a gaze of gender and patriarchy. They argue that feminists ignore alternative fo...
This review explores social science analyses of diagnosis of childhood neurological disabilities. The paper moves through three sections, which capture the historical and conceptual trends within the literature. The first focuses on work identifying the need to communicate effectively with parents when giving a diagnosis, the second explores the ro...
This paper identifies common ground in feminist and disability movement concerns with the social and ethical implications of antenatal screening and abortion. By examining the frameworks used by particular authors within each area, I argue that they both can and do have a shared agenda, which is focused on the social values that are embedded in ant...
This paper examines the role of various boundaries in giving both professional groups and individuals a sense of identity that provides both with status and legitimacy. Close attention is paid to the boundaries between personal and professional identities and values. Sociologists working with a discursive approach argue that professional identity a...
This important text introduces students to both feminism and other social and political theories via an examination of the inter relationship between different feminist positions and key contemporary debates. The book takes each debate in turn, outlines the main themes, discusses different feminist responses and evaluates the implications for real-...
This article investigates the influence of gendered occupational identities in the social construction of skill and technology in a retail company introducing an IT system. It focusses on female shop floor supervisors and considers the impact that ‘femininity’ had on definitions of skill and role during a period of change.
Evidence-based medicine (EBM) has become a major theme within health care. This has fuelled a significant debate about its role in reducing risk and its possible impact on professional autonomy. Challenges arguments that propose that EBM is a threat to professional power and status by looking at how evidence, risk and professional knowledge come to...
The paper, based on a major comparative study of the introduction of management information systems in retailing, health and higher education, argues for a broader and more differentiated account of users in studies of technological innovation. End-users must incorporate new systems into their working lives and in so doing play a crucial and active...
Within the different ideas that have been prominent within feminism over the last decade, postmodernism has remained the most contentious. Concerns explored in this paper include postmodernism's heritage in the comfort of male academia, which for some leaves postmodernism incapable of reflecting, understanding, or helping the problems faced by wome...
Projects
Projects (7)
The gene testing directory is due to be launched in 2019 and genetic testing for common disease susceptibility will become part of the diagnostic pathway in diseases such as cancer and cardiac care. Across most medical specialties clinicians will have access to genetic tests hitherto only requested by genetics clinicians. Pathways are being developed between genetics services and mainstream clinicians to ensure that testing is effectively managed; that patients are followed up appropriately regardless of gene test outcome and that genetic diagnoses are cascaded throughout families. Early anecdotal experiences highlight differences in patients’ and clinicians’ understandings of genetic test results and their implications for families. The challenges facing clinicians to correctly interpret genetic information and understand the medical implications for patients and family members are significant. But the impact of a genetic test is much broader than medical management of a condition or those at risk of a condition. Genetic testing can deeply affect individuals psychologically and socially, it can also change family dynamics and relationships. Pre-test genetic counselling goes some way to help people prepare for these possibilities. In the mainstreaming environment genetic counselling will only be provided to individuals and their family after the fact, when a genetic basis for their condition has been identified. Evaluating the impact of mainstreaming on patients and their families across the newly formed Yorkshire and Northeast (YNE) Genomics Laboratory Hub (Leeds, Sheffield Newcastle) will identify need, inform the mobilization of appropriate education and support resources to enhance care and clinical utility.
