
Tom ShakespeareUniversity of East Anglia | UEA · Norwich Medical School
Tom Shakespeare
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Publications (157)
This paper draws attention to the health-related work that disabled people do when engaging with rehabilitation services. Medical sociology has a rich history of looking at the 'illness work' that patients do, while disability studies scholars have explored the cultural value placed upon paid work and the effects on social status of being unable to...
Personal assistance (PA) is a model of support where disabled people take control of recruiting, training and managing their support staff. Direct payment relationships and symbolism borrowed from the corporate world frame PA relationships as instrumentally focused and largely free from emotional entanglements. Yet complicating this picture is rese...
Sociological concern for rehabilitation remains limited. This paper aims to contribute to rehabilitation theory. It examines two units of a specialist rehabilitation hospital in the UK (amputee and neurological services) by focusing on the key actors involved – families, patients, staff – and the parameters shaping their relationships. The findings...
Personal assistance (PA) is a model of support where disabled people take control of recruiting, training and managing the people that support them. Personal assistance differs from other forms of care, such as domiciliary or informal care, because the disabled person is in control of how, when and by whom they are supported. With the advent of per...
Developed in collaboration with WHO Department of Mental Health and Substance Abuse, this study (conducted in India, the UK, and the USA) integrated feedback from mental health service users into the development of the chapter on mental, behavioural, and neurodevelopmental disorders for ICD-11. The ICD-11 will be used for health reporting from Janu...
Purpose: This article explores the differences between experiences of family role in in-patient rehabilitation in Turkey and England.
Background: The literature predominantly assumes family presence in rehabilitation as positive, because it draws upon Western cases, where care is delivered fully by professionals, and patients may feel isolated duri...
This article explores the contribution of religion and spirituality to the happiness of people who have lived with quadriplegia over the medium to long term. It arises out of a qualitative study on living the good life with quadriplegia, which was grounded in the logic of the virtue tradition. This tradition holds that happiness is not principally...
Personal assistance is an innovative role within social care whereby disabled people directly employ others to provide support. Defining personal assistance as a commodified support relationship is insufficient as it fails to capture the lived complexity of these relationships. This article reports on qualitative interviews in England with 30 disab...
Rehabilitation is a controversial subject in disability studies, often discussed in terms of oppression, normalisation, and unwanted intrusion. While there may be good reasons for positioning rehabilitation in this way, this has also meant that, as a lived experience, it is under-researched and neglected in disabilities literature, as we show by su...
Objective
We aim to explore the barriers to accessing primary care for socio-economically disadvantaged older people in rural areas.
Methods
Using a community recruitment strategy, fifteen people over 65 years, living in a rural area, and receiving financial support were recruited for semi-structured interviews. Four focus groups were held with ru...
This paper follows up on qualitative interviews conducted with British disabled people in 1994–6, exploring how people’s lives and relationships have changed over twenty years (n = 8). The themes include imagery and identity, access to relationships, social context and attitudes. Ageing brought greater self-acceptance, and also lower salience of im...
Purpose
Creating more positive individual narratives around illness and identity is at the heart of the mental health care recovery movement. Some recovery services explicitly use personal storytelling as an intervention. This paper looks at individual experiences of a personal storytelling intervention, a recovery college Telling My Story course....
Purpose
The purpose of this paper is to provide insight into the views and attitudes that psychiatrists have about Recovery Colleges (RCs).
Design/methodology/approach
Semi-structured interviews were conducted with 10 psychiatrists from the Norfolk and Suffolk Foundation Trust (NSFT).
Findings
Psychiatrists had a strong concept of the RC model...
This paper reports on a qualitative evaluation of a Norfolk-based network of community singing workshops aimed at people with mental health conditions and the general public. The aims of the study were (a) to evaluate the effectiveness of the Sing Your Heart Out (SYHO) project and (b) to identify the key features which made the project distinctive....
Grounded in the logic of the virtue tradition, the qualitative study “the good life and quadriplegia” collected the self-narratives of people that have lived with the impairment over the medium to long term. This article draws on those narratives to describe how people understood the good life in the context of the losses and hardship of their spin...
Introduction
Developed in dialogue with WHO, this research aims to incorporate lived experience and views in the refinement of the International Classification of Diseases Mental and Behavioural Disorders 11th Revision (ICD-11). The validity and clinical utility of psychiatric diagnostic systems has been questioned by both service users and clinici...
The aim of this paper is to argue for the utility of a relational model of disability, as a way of conceptualizing dementia. We explore whether dementia should be considered as a disability, and whether people with dementia might consider themselves as disabled people. We review examples of, and issues raised by, the political activism of people wi...
The Independent Living Fund (ILF) was a non-departmental public body funded by the Department for Work and Pensions. An efficient and popular system of support, the ILF enabled 46,000 people between 1988 and 2015; however, in 2015 the Fund closed and local authorities (LAs) assumed sole responsibility for supporting former ILF users. This article p...
The biopsychosocial model (BPS) of mental distress, originally conceived by American psychiatrist George Engel in the 1970s and commonly used in psychiatry and psychology, has been adapted by Gordon Waddell and Mansel Aylward to form the theoretical basis for current UK government thinking on disability. Most importantly, the Waddell and Aylward ve...
In the helpful article "Why Bioethics Needs a Disability Moral Psychology," Joseph Stramondo adds to the critique of actually existing bioethics and explains why disability activists and scholars so often find fault with the arguments of bioethicists. He is careful not to stereotype either community-rightly, given that bioethicists endorse position...
Background:
Mental health services continue to develop service user involvement, including a growth in employment of peer support workers (PSWs). Despite the importance of the views and attitudes expressed by psychiatrists, this topic has not previously been studied.
Aims:
To gain insight into the views and attitudes psychiatrists have about PSW...
Children with disabilities are thought to have an increased risk of unintentional injuries, but quantitative syntheses of findings from previous studies have not been done. We conducted a systematic review and meta-analysis to assess whether pre-existing disability can increase the risk of unintentional injuries among children when they are compare...
Background:
Health related rehabilitation is instrumental in improving functioning and promoting participation by people with disabilities. To make clinical and policy decisions about health-related rehabilitation, resource allocation and cost issues need to be considered.
Objectives:
To provide an overview of systematic reviews (SRs) on economi...
Introduction:
The UK has an ageing population, especially in rural areas, where deprivation is high among older people. Previous research has identified this group as at high risk of poor access to healthcare. The aim of this study is to generate a theory of how socioeconomically disadvantaged older people from rural areas access primary care, to...
Grouped around four central themes - illness and impairment, disabling processes, care and control, and communication and representations - this collection offers a fresh perspective on disability research, showing how theory and data can be brought together in new and exciting ways. Disability Research Today starts by showing how engaging with iss...
Persons with disabilities make up some 15% of the world's population and are at higher risk of violence. Yet there is currently no systematic review of the effectiveness of interventions to prevent violence against them. Thus the aim of this review was to systematically search for, appraise the quality of, and synthesize the evidence for the effect...
Spinal Cord is the official journal of the International Spinal Cord Society. It provides complete coverage of all aspects of spinal injury and disease.
Over the last forty years, the field of disability studies has emerged from the political activism of disabled people. In this challenging review of the field, leading disability academic and activist Tom Shakespeare argues that disability research needs a firmer conceptual and empirical footing.
Ways of thinking about and responding to disability have radically changed in recent decades. Traditionally, disability was regarded in terms of sin, karma, or divine punishment. More recently, disability was made a medical issue and defined in terms of shortcomings of body or mind, which had to be prevented or cured at all costs. In the late 20th...
The World Report on Disability was requested by the World Health Assembly, the governing body of the World Health Organization (WHO). Because disability is broader than health, WHO partnered with the World Bank. The World Report was published in 2011 and provides a comprehensive scientific analysis on the global situation of people with disability...
Background:
Globally, at least 93 million children have moderate or severe disability. Children with disabilities are thought to have a substantially greater risk of being victims of violence than are their non-disabled peers. Establishment of reliable estimates of the scale of the problem is an essential first step in the development of effective...
The social model of disability has been fruitful in promoting human rights of people with disabilities, but has been associated with a downplaying of the health dimension of disability. Adequate accounts of disability should make space for medical, psychological, social, and political factors in the lives of people with disabilities. Disability is...
About 15% of adults worldwide have a disability. These individuals are frequently reported to be at increased risk of violence, yet quantitative syntheses of studies of this issue are scarce. We aimed to quantify violence against adults with disabilities.
In this systematic review and meta-analysis, we searched 12 electronic databases to identify p...
Keywordsmediated communication, disability narrative, experience, identity
According to the World Health Organization, there are 1 billion disabled people in the world, of whom somewhere between 110 million and 190 million are adults with very significant difficulties in functioning (WHO 2011). This prevalence estimate begs the question of what counts as disability. WHO’s answer to that question is found in the Internatio...
Lourdes . Directed by Hausner Jessica, Austria, 2009, Artificial Eye, DVD release 2010.
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Watching Lourdes , I am not sure what to think—as a rationalist, as a disability activist or even as a film-goer. My consolation is that I cannot be alone: this is a very subtle and ambiguous film, which demonstrates the power of cinema as well a...
There are multiple intersections between injury and disability. Human rights approaches to disability (eg, the UN Convention on the Rights of Persons with Disabilities) suggests some rethinking may be needed. Many disabled people reject a pathological conception of disability and celebrate disability an identity. Evidence shows that disabled people...
People with restricted growth have liminal status in the disability community. Because people with these conditions appear to live normal lives, they do not always define themselves as disabled or participate in the disability community, nor are they always identified as disabled people by others. This paper reports from a project seeking to fill t...
The social model approach to understanding disability reflects the growth of the disability movement, and emphasizes the role of discrimination and prejudice in the lives of disabled people. The social model has become more than just a theoretical model or paradigm for research: it has become a litmus test, a means of identifying with a particular...
Bioethicist Tom Shakespeare on why Reason needs to take everyone into account
This paper responds to the reviews by Edwards, Holm, Koch, Thomas and Vehmas of Disability Rights and Wrongs (2006). After summarising the recent history of disability studies as a discipline, it explores: the political nature of disability research, questions of ontology and definition, and the uses and abuses of the expressivist argument. Disabil...
The paper examines the general literature and available research evidence on medical, health and social aspects of life for adults with skeletal dysplasia conditions causing profound short stature.
The paper reports on a literature review using available medical, psychological and social sources.
There is a dearth of methodologically sound research...
Changing Accounts of DisabilityImpairment is Part of the Human ConditionPeople Adapt Well to DisabilityDisability is a Relational IssueResponding to the Disability ChallengeDisability and Health CareReferences
This chapter explores social and psychological aspects of disability, in the context of obstetrics and gynecology. First, I discuss concepts of normality and disability, exploring how values and contexts determine how those ideas are defined and experienced. Second, I look at three areas of practice: sexuality, parenting, and genetic screening. The...
Over the last thirty years, the field of disability studies has emerged from the political activism of disabled people. In this challenging review of the field, leading disability academic and activist Tom Shakespeare argues that the social model theory has reached a dead end. Drawing on a critical realist perspective, Shakespeare promotes a plural...
This article summarises the results of a research project that used a scenario about sex selection of embryos for social reasons as a basis for discussion groups with lay people. The aim of the research was to examine the processes by which non-professionals make ethical evaluations in relation to a contested area in medical genetics. We note in pa...
In this paper we explore lay people's discussions of the controversial topic of social sex selection (SSS). In the UK and many other countries, SSS is prohibited by law. In 2003 the UK Human Fertilisation and Embryology Authority, after an extensive public consultation, decided against changing the existing legislation. However, this initiative and...
Assisted reproductive technologies are typically positioned as increasing the range of choices open to the healthcare consumer, thereby enhancing 'reproductive freedom'. In this paper, we question the equivalence of reproductive choice and personal freedom in ethical theory, using results from a project investigating how lay people make ethical eva...
Disabled people are often hostile toward prenatal screening and preimplantation diagnosis. They fear eugenics and discrimination.
Keywords:
disabled people;
screening;
eugenics;
choice;
discrimination
INTRODUCTION Philosophers and disability activists have concentrated much energy on the moral status of decisions about prenatal testing and selective termination on the grounds of fetal impairment. On the one foot, there is a range of arguments about wrongful birth and the immorality of choosing disability or of restricting the open future of a po...