Tom Shakespeare

World report on disability.

On 9 June 2011, the World Health Organization, together with the World Bank, launched the firstever World report on disability at the United Nations in New York. Over 370 experts have contributed to the document, which reviews the global literature on disability, need and unmet need, barriers, and ways of addressing barriers. Each of the chapters on data, health, rehabilitation, assistance and support, environments, education and employment makes recommendations, and the whole report concludes with cross cutting recommendations to promote quality of life and participation of persons with disabilities. It is hoped that the World report will support implementation of the UN Convention on the Rights of Persons with Disabilities (2008). This report will be an important resource for the rehabilitation community, particularly in low and middle-income countries. Examples of good practice are explored as diverse as clubfoot treatment in Uganda, housing adaptations in United Kingdom, prosthetics and orthotics training in El Salvador, the reform of mental heath law in Italy and strengthening rehabilitation services for earthquake victims in Gujarat, India. Gaps in rehabilitation policy and provision are highlighted including the problems with funding mechanisms and the paucity of rehabilitation personnel notably in Africa. The recommendations on rehabilitation include prioritizing early intervention, improving access to assistive devices, improving coordination between levels and across sectors and promoting community-based rehabilitation. Most importantly, the World report identifies rehabilitation research gaps: for example, on the link between rehabilitation needs, receipt of services, health outcomes, and costs. Research is needed on the long term outcomes of rehabilitation, and on the effect on families and communities, in order to help justify increased expenditure on rehabilitation services. Access to research findings, in the form of evidence-based guidelines on cost-effective rehabilitation measures is also required, particularly in low and middle income countries. Overall, the World report on disability is a tremendous opportunity to raise the profile of disability and rehabilitation across the world, and to encourage governments to devote sufficient resources to improve functioning and promote participation of persons with disabilities. The report challenges the rehabilitation community to situate our work within the human rights agenda, along the lines of Article 26 of the Convention on the Rights of Persons with Disabilities. For example, the voices of persons with disabilities must be heard loud and clear, both in rehabilitation research, and in efforts to improve delivery of rehabilitation services. But the report also challenges the disability rights community, to understand that people with disabilities need access to good quality rehabilitation, if they are to enjoy their other rights such as access to education and decent work. Too often, rehabilitation is a neglected field, whereas this report makes clear, for many of the world’s billion children and adults with disabilities it is an essential route to participation and independence.

Prevalence and risk of violence against children with disabilities: a systematic review and meta-analysis of observational studies

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 prevention programmes. We therefore undertook a systematic review and meta-analysis to synthesise evidence for the prevalence and risk of violence against children with disabilities. METHODS For this systematic review and meta-analysis, we searched 12 electronic databases to identify cross-sectional, case-control, or cohort studies reported between Jan 1, 1990, and Aug 17, 2010, with estimates of prevalence of violence against children (aged ≤18 years) with disabilities or their risk of being victims of violence compared with children without disabilities. FINDINGS 17 studies were selected from 10,663 references. Reports of 16 studies provided data suitable for meta-analysis of prevalence and 11 for risk. Pooled prevalence estimates were 26·7% (95% CI 13·8-42·1) for combined violence measures, 20·4% (13·4-28·5) for physical violence, and 13·7% (9·2-18·9) for sexual violence. Odds ratios for pooled risk estimates were 3·68 (2·56-5·29) for combined violence measures, 3·56 (2·80-4·52) for physical violence, and 2·88 (2·24-3·69) for sexual violence. Huge heterogeneity was identified across most estimates (I(2)>75%). Variations were not consistently explained with meta-regression analysis of the characteristics of the studies. INTERPRETATION The results of this systematic review confirm that children with disabilities are more likely to be victims of violence than are their peers who are not disabled. However, the continued scarcity of robust evidence, due to a lack of well designed research studies, poor standards of measurement of disability and violence, and insufficient assessment of whether violence precedes the development of disability, leaves gaps in knowledge that need to be addressed. FUNDING WHO Department of Violence and Injury Prevention and Disability.

Cultural Representation of Disabled People: Dustbins for Disavowal?

ABSTRACT 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 sciences so that there is more of an impact on policy.

Choices and Rights: Eugenics, genetics and disability equality

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 to genetics and obstetrics.

Disabled sexuality: toward rights and recognition

Looking back at the development of disability sexuality studies, there is a need for a social model of disabled sexuality. However, this should be sensitive to difference, including the impact of impairment. Disability sexuality studies necessarily challenge notions of sexual normality. There is a danger in overstating the importance of sex, as opposed to friendship and intimacy. Honneths work on relations of recognition may offer a way to conceptualise sexuality issues within the disability rights agenda.

Medical and social aspects of the life course for adults with a skeletal dysplasia: A review of current knowledge

Purpose. 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. Method. The paper reports on a literature review using available medical, psychological and social sources. Results. There is a dearth of methodologically sound research evidence in this field, and this is particularly marked in areas such as transition to adulthood, ageing and medical, surgical and health experiences. Conclusions. There are serious gaps in the available literature and research evidence is sparse and often based on biased samples of limited numbers. This means that it is difficult to get information beyond the anecdotal in assessing the health and social needs of this group of people, and in particular to define needs that are currently unmet. It also limits the scope of advice and information available to health professionals and others in the field who offer support to adults with the conditions and parents of newly-diagnosed babies and young children.

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 between disability and other social movements may need to be tested. Identity politics and psychology explain some of the fervour of SSM debates. To move forward, a social theory of embodiment is required.

A Systematic Review of the Effectiveness of Interventions to Prevent and Respond to Violence Against Persons With Disabilities

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 effectiveness of interventions to prevent and mitigate the consequences of all the main forms of interpersonal violence against people with all types of disabilities. The method used consisted of searches of eleven electronic databases, hand searches of three journals, scanning of reference lists of review articles, contact with experts, appraisal of risk of bias using the Quality Assessment Tool for Quantitative Studies, and narrative synthesis of results. This resulted in 736 titles being identified, 10 of which met the inclusion criteria and 6 and 2 addressed people with intellectual disabilities and developmental disabilities, respectively. Only one was from a low- and middle-income country. All studies received a weak rating on the quality assessment tool and none could be considered effective after taking risk of bias into account. In sum, the current evidence base offers little guidance to policy makers, program commissioners, and persons with disabilities for selecting interventions. More and higher quality research is required, particularly from low- and middle-income countries and on other forms of disability such as physical impairments, sensory impairments, and mental health conditions.

Still a Health Issue

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 almost always connected to a health condition; civil rights law needs to be anchored in a robust definition of the protected class; failure to meet health needs constitutes an important aspect of the discrimination faced by people with disabilities.