Papers by Tom Shakespeare
Social Work & Social Sciences Review, Jun 19, 2015
Research has established that disabled young people are at greater risk of experiencing all forms... more Research has established that disabled young people are at greater risk of experiencing all forms of maltreatment, especially neglect . Despite increasing awareness of their heightened vulnerability, the maltreatment of disabled children remains under-recognised and is under-reported. Disabled children have the same rights as all children to be protected from maltreatment; to have their concerns listened to; to participate fully in decisions made about them; and to receive help to recover from maltreatment. In this paper framework for understanding the processes of recognition, telling and receiving help following maltreatment from the child's perspective, is applied to disabled children. The particular barriers that disabled children and those working with them face in recognising and responding to maltreatment are analysed by reviewing what is known about child protection practice with disabled children, mainly in the UK. Suggestions are made about how practice with disabled children could be improved.
Bulletin of The World Health Organization, Aug 1, 2021
BMJ Global Health, Oct 1, 2020
et al. From words to actions: systematic review of interventions to promote sexual and reproducti... more et al. From words to actions: systematic review of interventions to promote sexual and reproductive health of persons with disabilities in low-and middle-income countries.
Voluntary Sector Review
This article explores the third sector’s role during the COVID-19 pandemic and its impact on the ... more This article explores the third sector’s role during the COVID-19 pandemic and its impact on the experiences of disabled people in England and Scotland. It draws on semi-structured longitudinal interviews with 71 disabled people and 31 key informants, primarily from disabled people’s organisations. The third sector’s nimble response, supporting people in myriad innovative ways, emerged as a key finding. In contrast, statutory services were experienced by many as a barrier rather than an enabler, posing doubts about the state’s ability to respond to the crisis. Our findings raise questions about the role of the state and the third sector. We employ and critique Young’s typology of sector–state relations, concluding that the state needs to engage with the third sector as an equal and strategic partner, recognising its civil society credentials. Further, we raise questions about the appropriateness of using supply and demand models to understand the third sector’s societal role.
African Journal of Disability
Universal access to quality education is a human right. International consensus documents, includ... more Universal access to quality education is a human right. International consensus documents, including the Sustainable Development Goals (SDGs), codify this right and provide clear targets for countries to try and achieve in terms of educational access (United Nations 2015). Universal access to quality education is also essential to poverty reduction. The right of children with disabilities to education is codified in Article 24 of the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) (United Nations 2006), and the SDGs (particularly Goal 4, to ensure inclusive and equitable quality education and promote lifelong learning opportunities for all) recognise the importance of ensuring accessible education (United Nations 2015). However, the world's 240 million children with disabilities (United Nations International Children's Emergency Fund [UNICEF] 2021) face a range of barriers that limit their access to and participation in education. Exclusion from the educational environment and from educational attainment is still persistent, particularly in low-and middle-income countries (LMICs), despite some gains made in the past few decades (Mizunoya, Mitra & Yamasaki 2018; UNICEF 2021). Compared with their peers without disabilities, children with disabilities are less likely to enrol in school, and if they do enrol, they have lower levels of school attendance and lower rates of transition to higher education than their peers without disabilities (Banks et al. 2017; United Nations 2019; World Health Organization [WHO] & World Bank 2011). A landmark study in 2018 showed that across 15 LMICs, having a disability reduced the probability of a young person attending school by 30.9% (Mizunoya et al. 2018). A variety of challenges can create barriers to educational inclusion, participation and attainment amongst children with disabilities, including inaccessible school facilities and transport to Background: Globally, children with disabilities are often excluded from and within schools. Objectives: This study explored experiences of inclusion in education amongst children with disabilities in Malawi. The enquiry focused on the perspectives of children and their caregivers on barriers and enablers of inclusion. Method: Data were gathered through in-depth interviews with 37 children with disabilities, 61 caregivers and 13 teachers from Ntcheu and Mangochi districts and analysed thematically using the International Classification of Functioning, Disability and Health as a framework. Results: Overall, this research study found that children with disabilities face persistent and systemic barriers to attending, progressing and learning in school. Conclusion: School outcomes were influenced by a range of impairment-related, personal and environmental factors, including poor health, household poverty, attitudes of caregivers, teachers, peers and children themselves and school resources for inclusive education. Contribution: 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.
BMJ
Peer networks are essential to support people with disability to live happy, autonomous lives, wr... more Peer networks are essential to support people with disability to live happy, autonomous lives, writes Thomas Shakespeare Thomas Shakespeare professor of disability research Disability is not rare: 15% of the world's population-more than a billion people-are affected by disability, according to the World Health Organization. 1
IDS Bulletin
People with disabilities are often excluded from research, which may be exacerbated during the on... more 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, including maintaining ethical standards and safeguarding; enabling active participation of people with disabilities; adapting remote research data collection tools and methods to meet accessibility, feasibility, and acceptability requirements; and promoting inclusive and effective analysis and dissemination. While this article is focused on adaptations during the pandemic, it is highly likely that the issues and strategies highlighted here will be relevant going forward, either in similar crises or as the world continues to move towards greater d...
Introduction: There is little evidence on the impact of livelihood interventions amongst people w... more Introduction: There is little evidence on the impact of livelihood interventions amongst people with disabilities. Effective programmes are critical for reducing the heightened risk of poverty and unemployment facing persons with disabilities. STAR + is a skills development and job placement programme targeted to out-of-school youth with disabilities (ages 14–35) living in poverty. It is a disability-targeted adaptation to an existing, effective intervention (STAR), which has been designed to address barriers to decent work for people with disabilities. This protocol describes the design of a cluster randomised controlled trial of STAR + in 39 of the 64 districts of Bangladesh. Methods BRAC has identified 1,500 youth with disabilities eligible for STAR + across its 91 branch offices (typically a geographical areas covering about 8 km radius from local BRAC office) catchment areas (clusters). BRAC has limited funding to deliver STAR + and so 45 of the 91 branches have been randomly a...
Social Policy and Society
Governments across the world have been slow in reacting to meeting the needs of disabled people d... more 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 examining the experiences of disabled people during the pandemic in England and Scotland. It focuses on the crisis in social care and offers evidence of how lives have been disrupted. For many, this resulted in a sudden loss of services, delayed assessments and break down of routines and communities. Findings underline the weakness of social care in its wider relationship with the NHS and show how the social care crisis has challenged the goal of independent living.
Wellcome Open Research
Background: This study explores the acceptability and feasibility of the use of two different Par... more Background: This study explores the acceptability and feasibility of the use of two different Participatory Visual Methods (Participatory Video and Digital Storytelling) in gathering information on the experiences and perspectives of carers of children with Congenital Zika Syndrome within Colombia. Methods: Participatory Video was used to assess the impact of the Juntos parent-support intervention in the lives of carers, and Digital Storytelling was used to explore the healthcare access for these children. In-depth interviews were conducted to probe participants on their views of these methods. Results: One Participatory Video was produced and four Digital Stories. Of the initial eight caregivers who took part in the Participatory Video process, four completed both the Digital Storytelling process and an in-depth interview about their experiences. The main factors shaping participants’ experiences related to the skills learned in making the videos, the feeling of collectiveness and...
London School of Economics and Political Science, Feb 9, 2021
, Nathaniel Scherer and Veronika Reichenberger (LSHTM) report on in-depth qualitative interviews ... more , Nathaniel Scherer and Veronika Reichenberger (LSHTM) report 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. They discuss the dislocations it has caused in everyday life; the failures of social care; the use of new technologies; and participants' views on leadership and communication. Disabled people may be at higher risk of the coronavirus, and of having worse outcomes from COVID-19. Additionally, the social response to the pandemic has gad a catastrophic impact on disabled people and their families. We were funded by UKRI to do a qualitative investigation of the impact of COVID-19 on disabled people in Britain. We talked to 69 disabled people in England and Scotland in June-August 2020. We also talked to caregivers of disabled children, and to 28 people who worked for disability organisations, or worked in education, health, or social services. Here we discuss our findings using what seemed to us to be the four most urgent messages. First, everyday life has been disrupted. People described how their health care and support had changed significantly. Routine rehabilitation sessions were cancelled. Attempts to replicate these via video conference or phone were not perceived to be particularly successful. Many annual checkups were cancelled, raising the risk of preventable medical problems being missed. Provision of assistive devices was severely affected. All this may lead to lack of functioning and increased dependency. Disabled people appear to have been an afterthought in the response to COVID-19. People were fearful about the virus. Many found it impossible to practise proper social distancing. People who were hard of hearing talked about the problems face coverings caused: transparent masks for lipreading have been in very short supply, leaving people excluded from the spoken world. Disabled people appear to have been an afterthought in the response to COVID-19. For example, we heard how provision was often made for non-disabled children who were learning from home, but not, at first, for children with special educational needs and disabilities, and learning materials were often inaccessible or inappropriate. Personal Protective Equipment (PPE) was provided for hospitals, but not for care homes, and then in care homes, but not for homecarers and personal assistants. Some disabled people's organisations had to step in and source PPE for their members.
Global Discourse, 2022
Provides a response to Johnson and Nettle’s paper, discussing justifications for the UK welfare s... more Provides a response to Johnson and Nettle’s paper, discussing justifications for the UK welfare state, and associated perceptions of disability and fairness. Rather than the ‘stick’ of sanctions and conditionality, more investment is required in return to work efforts.
London School of Economics and Political Science, Feb 8, 2021
report on in-depth qualitative interviews conducted with 69 disabled people in England and Scotla... more report 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. They discuss the dislocations it has caused in everyday life; the failures of social care; the use of new technologies; and participants' views on leadership and communication. Disabled people may be at higher risk of coronavirus (SARS-CoV-2), and of having worse outcomes from COVID-19. Additionally, the social response to the pandemic has gad a catastrophic impact on disabled people and their families. We were funded by UKRI to do a qualitative investigation of the impact of COVID-19 on disabled people in Britain. We talked to 69 disabled people in England and Scotland in June-August 2020. We also talked to caregivers of disabled children, and to 28 people who worked for disability organisations, or worked in education, health, or social services. Here we discuss our findings using what seemed to us to be the four most urgent messages. First, everyday life has been disrupted. People described how their health care and support had changed significantly. Routine rehabilitation sessions were cancelled. Attempts to replicate these via video conference or phone were not perceived to be particularly successful. Many annual checkups were cancelled, raising the risk of preventable medical problems being missed. Provision of assistive devices was severely affected. All this may lead to lack of functioning and increased dependency. People were fearful about the virus. Many found it impossible to practise proper social distancing. People who were hard of hearing talked abut the problems face coverings caused: transparent masks for lipreading have been in very short supply, leaving people excluded from the spoken world. Disabled people appear to have been an afterthought in the response to COVID-19. For example, we heard how provision was often made for non-disabled children who were learning from home, but not, at first, for children with special educational needs and disabilities, and learning materials were often inaccessible or inappropriate. Personal Protective Equipment (PPE) was provided for hospitals, but not for care homes, and then in care homes, but not for homecarers and personal assistants. Some disabled people's organisations had to step in and source PPE for their members.
The Disability Studies Reader, 2021
No part of this book may be reprinted, reproduced, transmitted, or utilized in any form by any el... more No part of this book may be reprinted, reproduced, transmitted, or utilized in any form by any electronic, mechanical, or other means, now known or hereafter invented, including photocopying, microfilming, and recording, or in any information storage or retrieval system, without written permission from the publishers.
Disability & Society, 2020
Families of children with disabilities experience stigma by association with their child. This ar... more 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 forms of disablism. Stigma is multi-layered, and a range of factors intersect with disability-related stigma, including poverty. A support group model can have a positive impact on caregiver internalised stigma and begin to address isolation. This should be part of a wider package of support to address wider structural issues. Families can play an important role in mediating
This article explores the Nuffield Council on Bioethics’ recent report about non-invasive prenata... more This article explores the Nuffield Council on Bioethics’ recent report about non-invasive prenatal testing. Given that such testing is likely to become the norm, it is important to question whether there should be some ethical parameters regarding its use. The article engages with the viewpoints of Jeff McMahan, Julian Savulescu, Stephen Wilkinson and other commentators on prenatal ethics. The authors argue that there are a variety of moral considerations that legitimately play a significant role with regard to (prospective) parental decision-making in the context of NIPT, for example, views on the morality of abortion and understandings of the impact of disability on quality of life. The variable nature of such considerations, both singularly and combined, suggests that any approach to NIPT should be sensitive to and understanding of similarly variable parental assessments and decisions. The implications of the approach developed for current and future policies in this area are exp...
Journal of Human Development and Capabilities, 2021
Globally, people with disabilities face a heightened risk of poverty. Drivers of poverty include ... more Globally, people with disabilities face a heightened risk of poverty. Drivers of poverty include exclusion from work and other livelihood activities (indirect costs) and disabilityrelated direct costssuch as for rehabilitation, personal assistance and assistive devicesthat are required for participation and functioning. This research explores sources of direct and indirect costs, their impact and mitigation strategies using 42 in-depth interviews with working-aged people with disabilities in Nairobi, Kenya and Dhaka, Bangladesh. This research finds that people with disabilities and their households face high direct costs, such as for healthcare, assistive devices, transportation and accommodations at school and work, and indirect costs, such as un-and underemployment and lower salaries when working. Many direct costs were unmet, or covered through out-of-pocket spending, although social protection in Kenya was also an important strategy. Unmet direct costs frequently led to higher future indirect costs. Direct and indirect costs could cause financial strain, decreased participation, health and wellbeing, particularly when unaddressed. Challenges mitigating costs included not just insufficient income, but also lack of decision-making power within the household and insufficient information on and poor availability of needed goods, services and opportunitiesfactors which should be considered in the design of interventions.
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Papers by Tom Shakespeare