Tom Shakespeare
Datos Biográficos
| ID | 144510 |
|---|---|
| NOMBRE | Tom Shakespeare |
| NOMBRES | Tom |
| APELLIDO | Shakespeare |
| FIRMA | SHAKESPEARE T |
| AFILIACIONES | London School of Hygiene & Tropical Medicine |
| ORCID | 0000-0003-2571-2787 |
| VERIFICADO | Sí |
| TOTAL DE OBRAS | 88 |
| TOTAL DE CITAS | 506 |
| TOTAL COMO AUTOR | 87 |
| TOTAL COMO EDITOR | 1 |
| PRIMER AÑO DE PUBLICACIÓN | 1992 |
| AÑO MÁS RECIENTE DE PUBLICACIÓN | 2026 |
| ÍNDICE H | 10 |
Reach, dose, and fidelity of STAR+, an employment intervention for youth with disabilities in Bangladesh
Youth with disabilities face persistent barriers to decent work. STAR+ is a disability-inclusive adaptation of a mainstream skills training program in Bangladesh that provides apprenticeships, classroom training, and disability-specific support. This process evaluation assessed the program’s reach, dose, and fidelity using mixed methods, including survey data from 675 youth and interviews with participants and implementers. Of the youth invited, …
Process evaluation of a disability-inclusive employment programme in Bangladesh
Persons with disabilities are more likely to be excluded from employment than those without disabilities, yet little is known about effective strategies to address this gap globally. This study is a process evaluation of a disability-inclusive employment programme STAR+, conducted in Bangladesh alongside a cluster randomised controlled trial. The intervention comprised a six-month apprenticeship for youth with disabilities to develop trade-specif…
Impact Evaluations for Progressing Disability-Inclusive Development
People with disabilities experience stark inequities across the spectrum of development priorities. Yet they are rarely prioritised by development programmes. The poor evidence base for ‘what works’ for disability-inclusive development is a major challenge to taking action and advancing the meaningful inclusion of people with disabilities. The Programme for Evidence to Inform Disability Action (PENDA) was established to undertake high-quality imp…
How inclusive were strategies to prevent the spread of Covid-19 for people with disabilities? Evidence from qualitative research in eight low- and middle-income countries
Consequently, the pandemic compounded existing barriers and inaccessibility experienced by people with disabilities and contributed to inequality
Sexual Health Behaviors and Outcomes Among Middle‐Aged and Older Disabled Adults in Britain
Middle-aged and older disabled adults in Britain are less likely to be sexually active, yet more likely to experience negative sexual health outcomes. The increased health-seeking behaviors and their vulnerability highlight the necessity for tailored sexual health services, extending into middle age and older adulthood
Experiences of accessing education among people with disabilities during the Covid-19 pandemic
The COVID-19 pandemic had profound impacts on education globally. The pandemic widened educational disparities between young people with and without disabilities, but accounts from low- and middle-income countries are missing from the literature. This article reports on a multi-country qualitative study of experiences of education in low- and middle-income countries during the pandemic. Interviews were conducted with primary, secondary, and terti…
Process evaluation of a disability-inclusive employment programme
Little is known about what works to facilitate disability-inclusive employment. This study reports initial findings of a process evaluation of a disability-inclusive employment programme, STAR+, being implemented across Bangladesh. The study interrogates the design of STAR+ and the structures and processes by which it was delivered. Findings reveal an important role of early involvement of disability-focused organizations in intervention planning…
Access to primary healthcare services among adults with disabilities in Brazil
OBJECTIVE: To investigate perspectives of people with disabilities in Brazil regarding the access to primary healthcare. METHODS: In-depth interviews were conducted with 44 individuals with disabilities in Pernambuco, Distrito Federal, and São Paulo between March 2020 and November 2021. These interviews were transcribed, coded, and analysed thematically, using the Levesque framework to identify healthcare access barriers. RESULTS: Participants ex…
Participatory research with youth with disabilities
Lessons learned from youth involvement in a disability inclusive research programme, focused on education and employment in 7 African countries
Experiences of Australian adults with disabilities living with government supports in the home during the Covid-19 pandemic
Adults with disabilities who live with government supports in their homes were among those most heavily impacted by COVID-19 public health measures, though few studies have considered the lived experiences of this group. This study invited Australian adults with disabilities who lived with government supports under the National Disability Insurance Scheme during the pandemic to share their experiences. The focus was changes in life satisfaction b…
Enhancing Disability Research Through Participatory Video
This paper explores the use of participatory video (PV) in a case study conducted in Arcoverde, Brazil, to address the call for greater participation of individuals with disabilities in health and social care planning and research. PV is grounded in similar concepts to the Disability Rights Movement's principle of "Nothing About Us, Without Us" and serves as a potential collaborative tool for individuals with disabilities to shape their narrative…
Impacts of the Covid-19 pandemic on access to healthcare among people with disabilities
These barriers ultimately led to decreased utilisation of services which, in turn, negatively impacted their health and wellbeing. However, we also found that certain factors, including active and engaged Organisations of Persons with Disabilities (OPDs) and Non-Governmental Organizations (NGOs) played a role in reducing some of the impact of pandemic-related healthcare access barriers
How representative are organisations of persons with disabilities? Data from nine population-based surveys in low- and middle-income countries
Organisations of Persons with Disabilities (OPDs) are critical to promoting and protecting the rights of people with disabilities. However, little is known about the extent to which people with disabilities are aware and members of OPDs. This study uses data from nine population-based surveys in low- and middle-income countries to explore OPD awareness and membership. Across settings, about a third of people with disabilities were aware of OPDs a…
Do they ever think about people like us
People with learning disabilities in England and Scotland have experienced an increased risk of illness and death during the COVID-19 pandemic. Drawing on data of a longitudinal qualitative study with 71 disabled people and 31 disability organisations, this article examines the experiences of 24 people with learning disabilities in England and Scotland during the pandemic, reflecting on what rendered them vulnerable and placed them at risk. Quali…
Listening to the Voices of Persons with Disabilities
Can a disability studies-medical sociology rapprochement help re-value the work disabled people do within their rehabilitation
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 work. Yet, a longstanding froideur between these two disciplines, which have fundamentally opposed …
“It Is Too Much for Us”
Globally, people with disabilities face a heightened risk of poverty. Drivers of poverty include exclusion from work and other livelihood activities (indirect costs) and disability-related direct costs–such as for rehabilitation, personal assistance and assistive devices–that are required for participation and functioning. This research explores sources of direct and indirect costs, their impact and mitigation strategies using 42 in-depth intervi…
I might be lucky and go back to school’
These findings carry implications for policy and planning in inclusive education and other services to support the health and well-being of children with disabilities in Malawi
When impairment impairs
When impairment impairs: a reply to ‘Fairness, generosity and conditionality in the welfare system: the case of UK disability benefits’ by Elliot Johnson and Daniel Nettle" published on Sep 2023 by Bristol University Press
Covid-19 and the Crisis in Social Care
Governments across the world have been slow in reacting to meeting the needs of disabled people during the pandemic. This has exposed existing inequalities in social policies, as well as new support barriers. Debates over social care have focused on Covid-19's impact on those living in residential care. Little is known about the experiences of disabled people who rely on daily support in their homes. This article reports on a year-long study exam…
Adapting Disability Research Methods and Practices During the Covid-19 Pandemic
People with disabilities are often excluded from research, which may be exacerbated during the ongoing Covid-19 pandemic. This article provides an overview of key challenges, opportunities, and strategies for conducting disability-inclusive research during the pandemic, drawing on the experience of research teams working across ten countries on disability-focused studies. It covers adaptations that are relevant across the project lifecycle, inclu…
Disabled people in Britain and the impact of the Covid ‐19 pandemic
This paper reports on in‐depth qualitative interviews conducted with 69 disabled people in England and Scotland, and with 28 key informants from infrastructure organisations in the voluntary and statutory sectors, about the impact of COVID‐19, and measures taken to control it. Participants were recruited through voluntary organisations. As with everyone, the Pandemic has had a huge impact: we discuss the dislocations it has caused in everyday lif…
Trouble in Direct Payment Personal Assistance Relationships
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 research showing that PA often involves moral dilemmas and interpersonal conflict. We report on data fro…
Triple jeopardy
Disability and poverty in the Global South
That the majority of the world’s disabled people live in developing countries is a truism; that they are disproportionately disadvantaged and desperate is an affront to all of us, particularly thos
Cultural Representation of Disabled People
Impairment and imagery are neglected within the social model approaches to disability. This is connected to a neglect of representation. Comparing the experience of disabled people to that of women, I explore the prejudice underlying cultural representation, using a variety of theoretical models. I conclude by suggesting an explanation for popular prejudice against disabled people
Defending the Social Model
In British disability politics, the disability movement has sponsored the social model approach to disability studies, which challenges the psychological model that individualizes disability & the medical model that pathologizes it. However, the social model has been internally critiqued to the detriment of the movement. It is recommended that energy be directed instead toward theoretically uniting those in disability studies in the social scienc…
Choices and Rights
Pre-natal screening is a highly contentious ethical and political issue. The paper discusses aspects of the debate, and focuses on the context in which reproductive decisions are taken and the lack of a disabled voice in genetic policy. Eugenic aspects of the practice of genetics, particularly surrounding the role of professionals and the notion of consent, are explored. The paper concludes with recommendations on a disability equality approach t…
Rules of Engagement
(1996). Rules of Engagement: Doing disability research. Disability & Society: Vol. 11, No. 1, pp. 115-121
Disability Rights and Wrongs
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 pluralist, engaged and nuanced approach to disability. Key topics discussed include: dichotomies - the dan…
Losing the plot'? Medical and activist discourses of contemporary genetics and disability
This paper highlights the absence of disability perspectives from research on the cultural construction of genetics. Specifically, it contrasts the discourse on disability emanating from the medical establishment, with the discourse on genetics emanating from the civil rights movement of disabled people. The rhetorical strategies of both positions are criticised, and greater communication and dialogue between different stakeholders in genetics is…
Disability-inclusive responses to Covid-19
Chance, choice and control
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 evaluations about the new genetic and reproductive technologies. We took the topic of social sex select…
Disabled people in Britain and the impact of the Covid ‐19 pandemic
This paper reports on in‐depth qualitative interviews conducted with 69 disabled people in England and Scotland, and with 28 key informants from infrastructure organisations in the voluntary and statutory sectors, about the impact of COVID‐19, and measures taken to control it. Participants were recruited through voluntary organisations. As with everyone, the Pandemic has had a huge impact: we discuss the dislocations it has caused in everyday lif…
Blaming the victim, all over again
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 version of the BPS has played a key role as the government has sought to reform spending on out-of-wor…
Social models of disability and other life strategies
The UK social model of disability (SSM) originated within a political context, which is both a strength and a weakness. Good social research has been conducted prior to, and outside, the confines of the SSM. The SSM is above all a brilliant tool for mobilising change. But it can be applied over‐zealously. Since the 1990s, various critiques of the SSM have been developed, exposing contradictions and inadequacies. Equally, some of the parallels bet…
Gift not commodity? Lay people deliberating social sex selection
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 similar consultation exercises have been criticised on the grounds that public opinion is poorly in…
Back to the future? New genetics and disabled people
This article attempts to put developments in molecular biology into the broader context of disability rights and the relationship between disabled people and medical science. It includes a critique of biologi cal reduclionism and of the role of the media in inflating 'back-to- basics biology'. The article suggests that disabled people have not been consulted or involved in debates around the new genetics and that a wider discussion of these devel…
Trouble in Direct Payment Personal Assistance Relationships
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 research showing that PA often involves moral dilemmas and interpersonal conflict. We report on data fro…
Performance management
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 personal health budgets, PA is no longer limited to social care but is also central to future NHS servi…
Disability studies today and tomorrow
Barnes, C. and Mercer, G. Disability. Oxford: Blackwell Publishers Ltd. vi + 186pp. 2002. £45 ISBN 0 7456 2508 8 (hbk) £14.99 ISBN 0 7456 2509 6 (pbk). Swain, J., French, S. and Cameron, C. (eds) Controversial Issues in a Disabling Society. Buckingham: Open University Press, ix + 198pp. 2003. £50 ISBN 0 335 20905 X (hbk) £17.99 ISBN 0 335 20904 1 (pbk). Priestly, M. Disability: a Lifecourse Approach. Cambridge: Polity. 248pp. 2003. $62.95 ISBN 0 …
Deviance and medicalization
No laughing matter
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 the research gap around the social and medical impact of skeletal dysplasia, finding that adults with…
Can a disability studies-medical sociology rapprochement help re-value the work disabled people do within their rehabilitation
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 work. Yet, a longstanding froideur between these two disciplines, which have fundamentally opposed …
Joking a Part
This article discusses the different contexts in which disabled people encounter and deploy humour, both as victims and as agents, and provides examples. It raises questions about identity and audience and interpretation and about embodiment itself
How representative are organisations of persons with disabilities? Data from nine population-based surveys in low- and middle-income countries
Organisations of Persons with Disabilities (OPDs) are critical to promoting and protecting the rights of people with disabilities. However, little is known about the extent to which people with disabilities are aware and members of OPDs. This study uses data from nine population-based surveys in low- and middle-income countries to explore OPD awareness and membership. Across settings, about a third of people with disabilities were aware of OPDs a…
Exploring caregiver experiences of stigma in Ghana
Families of children with disabilities experience stigma by association with their child. This article examines social and internalised stigma experienced in the family by caregivers who participated in a caregiver programme in Ghana. Stigma is pervasive, and gendered, with most mothers blamed for bringing disability into the home. Emotional distress, isolation and lack of support are common experiences. We argue that the mothers can experience f…
Rehabilitation as a Disability Equality Issue
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 surveying leading disability studies journals. With some notable exceptions, rehabilitation research h…
Quadriplegia, virtue theory, and flourishing
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 spinal-cord injury, and the virtues and attitudes that helped them to achieve it. While highlighting the…
Disability, Genetics and Global Justice
Genetic developments are viewed with distrust by the disability rights community. But the argument that genetic screening promotes social injustice is not straightforward. Disabled people are affected by both the problems of impairment and the problems of disability. Preventing impairment should be a priority as well as preventing disability. Questions of social justice arise if biomedical approaches are prioritized at the cost of structural chan…
Making Disability
Re-presenting disabled people
Disabled people's self-organisation
This article will examine the ways in which disabled people, world-wide but especially in the USA and Britain, have emerged as a coherent political force in the last 20 years. Furthermore, in looking at disability from the perspective afforded by new social movement arguments, I wish to explore the implications of this development: the fact that disabled people in the 1990s are ‘doing it for themselves’, and to develop comparisons between the dis…
Deviance and medicalization
The Body and Social Theory
Disabling Barriers-Enabling Environments
(1994). Disabling Barriers-Enabling Environments. Disability & Society: Vol. 9, No. 1, pp. 103-104
Cultural Representation of Disabled People
Impairment and imagery are neglected within the social model approaches to disability. This is connected to a neglect of representation. Comparing the experience of disabled people to that of women, I explore the prejudice underlying cultural representation, using a variety of theoretical models. I conclude by suggesting an explanation for popular prejudice against disabled people
Re-defining the disability problem
Back to the future? New genetics and disabled people
This article attempts to put developments in molecular biology into the broader context of disability rights and the relationship between disabled people and medical science. It includes a critique of biologi cal reduclionism and of the role of the media in inflating 'back-to- basics biology'. The article suggests that disabled people have not been consulted or involved in debates around the new genetics and that a wider discussion of these devel…
Sexual Politics of Disability
Introduction - Caroline barriers to being sexual - Juniper identity and imagery - Julie sex and relationships - Paul bad sex - Salma double the trouble? - Dafydd making a change - Penny.
Rules of Engagement
(1996). Rules of Engagement: Doing disability research. Disability & Society: Vol. 11, No. 1, pp. 115-121
Defending the Social Model
In British disability politics, the disability movement has sponsored the social model approach to disability studies, which challenges the psychological model that individualizes disability & the medical model that pathologizes it. However, the social model has been internally critiqued to the detriment of the movement. It is recommended that energy be directed instead toward theoretically uniting those in disability studies in the social scienc…
Social Constructionism as a Political Strategy
Choices and Rights
Pre-natal screening is a highly contentious ethical and political issue. The paper discusses aspects of the debate, and focuses on the context in which reproductive decisions are taken and the lack of a disabled voice in genetic policy. Eugenic aspects of the practice of genetics, particularly surrounding the role of professionals and the notion of consent, are explored. The paper concludes with recommendations on a disability equality approach t…
The Sexual Politics of Disabled Masculinity
Joking a Part
This article discusses the different contexts in which disabled people encounter and deploy humour, both as victims and as agents, and provides examples. It raises questions about identity and audience and interpretation and about embodiment itself
Losing the plot'? Medical and activist discourses of contemporary genetics and disability
This paper highlights the absence of disability perspectives from research on the cultural construction of genetics. Specifically, it contrasts the discourse on disability emanating from the medical establishment, with the discourse on genetics emanating from the civil rights movement of disabled people. The rhetorical strategies of both positions are criticised, and greater communication and dialogue between different stakeholders in genetics is…
Disabled Sexuality
Children and Genetic Technologies
review of GENETIC DILEMMAS: REPRODUCTIVE TECHNOLOGY, PARENTAL CHOICES, AND CHILDREN'S FUTURE, by Dena S. Davis
The Difference That Disability Makes
Introduction 2. Home Is Where the Heart Is 3. The Social Location of Suffering 4. Coming Face-to-Face with Suffering 5. The Birth of Disability 6. Image and Imitation Notes References Index
Social models of disability and other life strategies
The UK social model of disability (SSM) originated within a political context, which is both a strength and a weakness. Good social research has been conducted prior to, and outside, the confines of the SSM. The SSM is above all a brilliant tool for mobilising change. But it can be applied over‐zealously. Since the 1990s, various critiques of the SSM have been developed, exposing contradictions and inadequacies. Equally, some of the parallels bet…
Disability, Genetics and Global Justice
Genetic developments are viewed with distrust by the disability rights community. But the argument that genetic screening promotes social injustice is not straightforward. Disabled people are affected by both the problems of impairment and the problems of disability. Preventing impairment should be a priority as well as preventing disability. Questions of social justice arise if biomedical approaches are prioritized at the cost of structural chan…
Disability studies today and tomorrow
Barnes, C. and Mercer, G. Disability. Oxford: Blackwell Publishers Ltd. vi + 186pp. 2002. £45 ISBN 0 7456 2508 8 (hbk) £14.99 ISBN 0 7456 2509 6 (pbk). Swain, J., French, S. and Cameron, C. (eds) Controversial Issues in a Disabling Society. Buckingham: Open University Press, ix + 198pp. 2003. £50 ISBN 0 335 20905 X (hbk) £17.99 ISBN 0 335 20904 1 (pbk). Priestly, M. Disability: a Lifecourse Approach. Cambridge: Polity. 248pp. 2003. $62.95 ISBN 0 …
Democratizando a ciência? Júris de cidadãos e outras metodologias deliberativas
Disability Rights and Wrongs
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 pluralist, engaged and nuanced approach to disability. Key topics discussed include: dichotomies - the dan…
Psychology (62 obras) · Sociology (60 obras) · Political science (46 obras) · Disability Rights and Representation (31 obras) · Medicine (31 obras) · Social Psychology (27 obras) · Law (23 obras) · Social Psychology (22 obras) · Healthcare innovation and challenges (20 obras) · Gender Studies (17 obras)