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1
Iland, Emily Doyle. Drawing a blank: Improving comprehension for readers on the autism spectrum. Shawnee Mission, Kan: AAPC, 2011.
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2
Lerman, Jonathan. Jonathan Lerman: Drawings by an artist with autism. New York: George Braziller, 2002.
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3
de Beco, Gauthier. Disability in International Human Rights Law. Oxford University Press, 2021. http://dx.doi.org/10.1093/oso/9780198824503.001.0001.
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This book examines what international human rights law has gained from the new elements in the UN Convention on the Rights of Persons (CRPD). It explores how the CRPD is intricately bound up with other international instruments by studying the relationship between the Convention rights and those protected by other human rights treaties as well as the overall objectives of the UN. Using a social model lens on disability, the book shows how the Convention sheds new light on the very notion of human rights. In order to so, the book provides a theoretical framework which explicitly integrates disability into international human rights law. It explains how the CRPD challenges the legal subject by drawing attention to distinct forms of embodiment, before introducing the idea of the ‘dis-abled subject’ stemming from a recognition that all individuals encounter disability-related issues in the course of their lives. The book also examines how to apply this theoretical framework to a number of rights and highlights the consequences for the implementation of human rights treaties as a whole. It not only builds upon available literature straddling different fields, which include disability studies and legal and political theory, but also draws upon the recommendations of treaty bodies and reports of UN agencies as well as disabled people’s organisations. The book provides an agenda-setting analysis for all human rights experts by inviting them to appreciate the benefits of placing disabled people at the heart of international human rights law.
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Cascio, M. Ariel, and Eric Racine, eds. Research Involving Participants with Cognitive Disability and Difference. Oxford University Press, 2019. http://dx.doi.org/10.1093/oso/9780198824343.001.0001.
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Research Involving Participants with Cognitive Disability and Difference: Ethics, Autonomy, Inclusion, and Innovation provides timely, multidisciplinary insights into the ethical aspects of research that includes participants with cognitive disability and differences. These include conditions such as intellectual disability, autism, mild cognitive impairment, and psychiatric diagnoses. Research participants with cognitive disabilities and differences may be considered a vulnerable population, which may trigger protective responses. At the same time, they should also be empowered to participate in research in order to foster the growth of knowledge and the improvement of practices. For research participants with cognitive disabilities or differences, participating in research that concerns them follows the Disability Rights Movement’s call “Nothing About Us Without Us” and is a vital component of the principle of justice. However, cognitive disabilities and differences may pose challenges to ethical research, particularly with respect to the research ethics principle of autonomy for a variety of reasons. Several alternative or modified strategies, for example when obtaining informed consent, have been used by researchers. The chapters in this volume describe situations where difficulties arise, explore strategies for empowerment and inclusion, drawing on both empirical and normative research to offer suggestions for research design, research ethics, and best practices that empower people with cognitive disabilities and differences to participate in research while respecting and managing potential coercion or undue influence. Contributions from scholars in anthropology, sociology, ethics, child studies, health and rehabilitation sciences, philosophy, and law address these issues in both clinical and social/behavioral research.
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Blackie, Daniel. Disability and Work During the Industrial Revolution in Britain. Edited by Michael Rembis, Catherine Kudlick, and Kim E. Nielsen. Oxford University Press, 2018. http://dx.doi.org/10.1093/oxfordhb/9780190234959.013.11.
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A common claim in disability studies is that industrialization has marginalized disabled people by limiting their access to paid employment. This claim is empirically weak and rests on simplified accounts of industrialization. Use of the British coal industry during the period 1780–1880 as a case study shows that reassessment of the effect of the Industrial Revolution is in order. The Industrial Revolution was not as detrimental to the lives of disabled people as has often been assumed. While utopian workplaces for disabled people hardly existed, industrial sites of work did accommodate quite a large number of workers with impairments. More attention therefore needs to be paid to neglected or marginalized features of industrial development in the theorization of disability. Drawing on historical research on disability in the industrial workplace will help scholars better understand the significance of industrialization to the lives of disabled people, both in the past and the present.
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Sappok, Tanja, Sabine Zepperitz, and Mark Hudson. Meeting Emotional Needs in Intellectual Disability: The Developmental Approach. Hogrefe Publishing, 2021. http://dx.doi.org/10.1027/00589-000.
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Using a developmental perspective, the authors offer a new, integrated model for supporting people with intellectual disability (ID). This concept builds upon recent advances in attachment-informed approaches, by drawing upon a broader understanding of the social, emotional, and cognitive competencies of people with ID, which is grounded in developmental neuroscience and psychology. The book explores in detail how challenging behaviour and mental health difficulties in people with ID arise when their basic emotional needs are not being met by those in the environment. Using individually tailored interventions, which complement existing models of care, practitioners can help to facilitate maturational processes and reduce behavior that is challenging to others. As a result, the ‘fit’ of a person within his or her individual environment can be improved. Case examples throughout the book illuminate how this approach works by targeting interventions towards the person’s stage of emotional development. This book will be of interest to a wide range of professionals working with people with ID, including: clinical psychologists, psychiatrists, occupational therapists, learning disability nurses, speech and language therapists, and teachers in special education settings, as well as parents and caregivers.
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Kennedy, Seán, ed. Beckett Beyond the Normal. Edinburgh University Press, 2020. http://dx.doi.org/10.3366/edinburgh/9781474460460.001.0001.
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This book examines why Beckett’s writing is so queer, so disabled and disabling. Why did Beckett write so soften about mental illness, disability, perversion? Why did he take such an interest in ‘abnormals’ and ‘degenerates’? How did he reconceive ‘the human’ in the wake of Hitler and Stalin? Drawing on Beckett’s voluminous archive, as well as his primary texts, the authors use psychoanalysis, queer theory, disability theory and biopolitics to push Beckett studies beyond the normal.
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Sandell, Richard, Jocelyn Dodd, and Ceri Jones. Trading Zones. Edited by Paula Hamilton and James B. Gardner. Oxford University Press, 2017. http://dx.doi.org/10.1093/oxfordhb/9780199766024.013.4.
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Because of the determined efforts of disability activists, public historians, and other scholars, the hidden history of disabled people is emerging in the public sphere. Although museums and other cultural institutions hold wide-ranging material in their collections that links to the lives of disabled people, its significance is often underresearched and poorly understood. Although disabled people desire greater visibility, like other groups who have been marginalized or misrepresented, they also want to be involved in the process and empowered to make decisions about their representation. Drawing on insights from research and experimental practice, we suggest that the idea of the “trading zone,” the creation of a space of exchange for collaborative and equitable dialogue, provides a way forward for disabled people to make their voices heard in the museum and for museum staff to confront and develop new ways of incorporating disability history into their collections and displays.
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Kerrigan, John. Shakespeare Afoot. Oxford University Press, 2018. http://dx.doi.org/10.1093/oso/9780198793755.003.0003.
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That Shakespeare adds a limp to the received characterization of Richard III is only the most conspicuous instance of his interest in how actors walked, ran, danced, and wandered. His attention to actors’ footwork, as an originating condition of performance, can be traced from Richard III through A Midsummer Night’s Dream and As You Like It into Macbeth, which is preoccupied with the topic and activity all the way to the protagonist’s melancholy conclusion that ‘Life’s but a walking shadow, a poor player | That struts and frets his hour upon the stage’. Drawing on classical and early modern accounts of how people walk and should walk, on ideas about time and prosody, and the experience of disability, this chapter cites episodes in the history of performance to show how actors, including Alleyn, Garrick, and Olivier, have worked with the opportunities to dramatize footwork that are provided by Shakespeare’s plays.
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Linett, Maren Tova. Literary Bioethics. NYU Press, 2020. http://dx.doi.org/10.18574/nyu/9781479801268.001.0001.
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Literary Bioethics reads four novels as thought experiments through which to grapple with questions of value regarding animal lives, old lives, disabled lives, and engineered lives. Drawing from literary and cultural theory, disability studies, age studies, animal studies, and bioethics, it considers the value of these different kinds of lives as presented in fiction. The study treats “bioethics” broadly; rather than treating practical issues of medical ethics, it takes “bioethical questions” to mean 1) questions about the value and conditions for flourishing of different kinds of human and nonhuman lives, and 2) questions about what those in power ought to be permitted to do with those lives as we gain unprecedented levels of technological prowess. Exploring how the literary texts engage ideologies such as human exceptionalism, ableism, ageism, and a curative imaginary—a proto-transhumanism that cannot tolerate imperfection—the study demonstrates the power of reading literature bioethically.
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Wilson, Kay. Mental Health Law. Oxford University Press, 2021. http://dx.doi.org/10.1093/oso/9780192843258.001.0001.
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The debate about whether mental health law should be abolished or reformed emerged during the negotiations of the Convention on the Right of Persons with Disabilities (‘CRPD’) and has raged fiercely for over a decade. It has resulted in an impasse between abolitionists, States Parties, and other reformers and a literature which has devolved into ‘camps’. Mental Health Law: Abolish or Reform? aims to cut through the confusion using the tools of human rights treaty interpretation backed by a deep jurisprudential analysis of core CRPD concepts—dignity (including autonomy), equality, and participation—to gain a clearer understanding of the meaning of the CRPD and what it requires States Parties to do. In doing so, it sets out the development of both mental health law and the abolitionist movement including its goals and how and why it has emerged now. By digging deeper into the conceptual basis of the CRPD and developing the ‘interpretive compass’, the book aims to flesh out a broader vision of disability rights and move the debate forward by evaluating the three main current abolition and reform options: Abolition with Support, Mental Capacity with Support, and Support Except Where There is Harm. Drawing on jurisprudential and multi-disciplinary research from philosophy, medicine, sociology, disability studies, and history, it argues that mental health law should not be abolished, but should instead be significantly reformed to minimize coercion and maximize the support and choices given to persons with mental impairments to realize of all of their CRPD rights.
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Evans, Bethan, and Charlotte Cooper. Reframing Fatness: Critiquing ‘Obesity’. Edinburgh University Press, 2018. http://dx.doi.org/10.3366/edinburgh/9781474400046.003.0012.
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Over the last twenty years or so, fatness, pathologised as overweight and obesity, has been a core public health concern around which has grown a lucrative international weight loss industry. Referred to as a ‘time bomb’ and ‘the terror within’, analogies of ‘war’ circulate around obesity, framing fatness as enemy.2 Religious imagery and cultural and moral ideologies inform medical, popular and policy language with the ‘sins’ of ‘gluttony’ and ‘sloth’, evoked to frame fat people as immoral at worst and unknowledgeable victims at best, and understandings of fatness intersect with gender, class, age, sexuality, disability and race to make some fat bodies more problematically fat than others. As Evans and Colls argue, drawing on Michel Foucault, a combination of medical and moral knowledges produces the powerful ‘obesity truths’ through which fatness is framed as universally abject and pathological. Dominant and medicalised discourses of fatness (as obesity) leave little room for alternative understandings.
13
Rubery, Matthew, and Leah Price, eds. Further Reading. Oxford University Press, 2020. http://dx.doi.org/10.1093/oxfordhb/9780198809791.001.0001.
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What does reading mean in the twenty-first century? As other disciplines challenge literary criticism’s authority to answer this question, English professors themselves are defining new alternatives to close reading and to interpretation more generally. Further Reading brings together thirty commissioned essays drawing on approaches as different as formalism, historicism, neuroscience, disability, and computation. Contributors take up the following questions: What do we mean when we talk about “reading” today? How are reading techniques evolving in the digital era? What is the future of reading? This book foregrounds reading as a topic worthy of investigation in its own right rather than as a sub-section of histories of the book, sociologies of literacy, or theories of literature. As our knowledge of reading changes in step with the media and the scholarly tools used to apprehend it, a more precise understanding of this topic is crucial to the discipline’s future. This collection therefore seeks to introduce new ways of conceptualizing the term’s forms, boundaries, and uses. Its contributors bring varied vocabularies to bear on the contested nature and continued importance of reading, within the academy and beyond.
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Shaheen, Aaron. Great War Prostheses in American Literature and Culture. Oxford University Press, 2020. http://dx.doi.org/10.1093/oso/9780198857785.001.0001.
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Drawing on rehabilitation publications, novels by both famous and lesser-known American writers, and even the prosthetic masks of a classically trained sculptor, Great War Prostheses in American Literature and Culture addresses the ways in which prosthetic devices were designed, promoted, and depicted in America in the years during and after the First World War. The war’s mechanized weaponry ushered in an entirely new relationship between organic bodies and the technology that could both cause and attempt to remedy hideous injuries. This relationship was evident in the realm of prosthetic development, which by the second decade of the twentieth century promoted the belief that a prosthesis should be a spiritual extension of the person who possessed it. This spiritualized vision of prostheses held a particular resonance in American postwar culture. Relying on some of the most recent developments in literary and disability studies, the book’s six chapters explain how a prosthesis’s spiritual promise was largely dependent on its ability to nullify an injury and help an amputee renew (or even improve upon) his prewar life. But if it proved too cumbersome, obtrusive, or painful, the device had the long-lasting power to efface or distort his “spirit” or personality.
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Bolton, Derek. Clinical significance, disability, and biomarkers: Shifts in thinking between DSM-IV and DSM-5. Edited by Kenneth S. Kendler and Josef Parnas. Oxford University Press, 2017. http://dx.doi.org/10.1093/med/9780198796022.003.0002.
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Proposals have been made in connection with ICD and DSM revisions to separate the concepts of mental disorder and of impairments in social, occupational, or other important areas of functioning. The proposals are consistent with viewing disability as a social concept rather than a medical one. It is argued here on the basis of two main premises that mental disorder specifically cannot be conceptualized independently of social impairments. The first premise is that in general medicine the definition of disease essentially turns on impairments of normal function of an organ or system leading to poor outcomes. The second, compound premise is that one normal function of the central nervous system is the regulation of behaviour in the external world, and that this function is approximately the domain of the mental. The conclusion is drawn that mental disorder conceptually involves downturn in social, occupational, or other important areas of functioning.
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Freitag, Lisa. Extreme Caregiving. Oxford University Press, 2017. http://dx.doi.org/10.1093/med/9780190491789.001.0001.
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Raising a child with multiple special needs or disabilities is a time-consuming and difficult task that exceeds the usual parameters of parenting. This book examines all the facets of that task, from the better-known physical, financial, and emotional burdens to the previously invisible moral work involved. Drawing from narratives written by parents of children with a variety of special needs, academic research in ethics and disability, and personal experience in pediatrics, this book begins to recognize the moral consequences of providing long-term care for a child with complex needs. Using a virtue ethic framework based on Joan Tronto’s phases of care, it isolates the various tasks involved and evaluates the moral demands placed on the parent performing them. Raising a child with special needs requires an excess of attentiveness, responsibility, competence, and responsiveness, and demands from the parent a reassessment of their personal and social lives. In each phase, moral work must be done to become the sort of person who can perform the necessary caregiving. Some of the consequences are predictable, such as the emotional and physical burden of constant attentiveness and numerous unexpected responsibilities. But the need for competence, which drives an acquisition of medical knowledge, has not previously been analyzed. Nor has there been recognition of the enormous moral task of encouraging identity formation in a child with intellectual delays or autism. For a child who cannot attain independence, parents must continue to provide care and support into an uncertain future.
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de Búrca, Gráinne. Reframing Human Rights in a Turbulent Era. Oxford University Press, 2021. http://dx.doi.org/10.1093/oso/9780198299578.001.0001.
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In a turbulent era, with illiberal nationalism on the rise and international laws and institutions under persistent threat, this book asks what future the international human rights system has. It rejects the claims of those who view human rights law and advocacy as ineffective or worse in challenging injustice. Instead, it presents an experimentalist account of human rights which emphasizes the ongoing engagement between domestic activists and international and domestic institutions and actors in promoting rights-based change. Rather than the monolithic movement depicted in some academic critiques, it discerns a rich and diverse human rights movement which has helped significantly to challenge injustice and advance progressive change in many contexts. Drawing on case studies of gender justice, disability rights, children’s rights and reproductive justice from Pakistan, Argentina and Ireland, the book argues that the human rights movement has made an important difference around the world. It shows that despite daunting contemporary challenges including illiberalism, climate change, inequalities, pandemics and digitalization, human rights advocates and activists are engaged in critical self-reflection, renewal and reform that should enable the human rights movement to engage effectively with these challenges in the future. Indeed, the formidable challenges of our current turbulent era provide powerful reasons to reform, innovate, and strengthen the tools and practices of the human rights movement for the future, rather than abandon it, encourage others to do so, or herald its demise.
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Lerman, Jonathan, and Caren Lerman. Jonathan Lerman: The Drawings of a Boy with Autism. George Braziller, 2002.
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Ryff, Carol D., and Robert F. Krueger, eds. The Oxford Handbook of Integrative Health Science. Oxford University Press, 2018. http://dx.doi.org/10.1093/oxfordhb/9780190676384.001.0001.
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This handbook signals a paradigm shift in health research. Population-based disciplines have employed large national samples to examine how sociodemographic factors contour rates of morbidity and mortality. Behavioral and psychosocial disciplines have studied the factors that influence these domains using small, nonrepresentative samples in experimental or longitudinal contexts. Biomedical disciplines, drawing on diverse fields, have examined mechanistic processes implicated in disease outcomes. The collection of chapters in this handbook embraces all such prior approaches and, via targeted questions, illustrates how they can be woven together. Diverse contributions showcase how social structural influences work together with psychosocial influences or experiential factors to impact differing health outcomes, including profiles of biological risk across distinct physiological systems. These varied biopsychosocial advances have grown up around the Midlife in the United States (MIDUS) national study of health, begun over 20 years ago and now encompassing over 12,000 Americans followed through time. The overarching principle behind the MIDUS enterprise is that deeper understanding of why some individuals remain healthy and well as they move across the decades of adult life, while others succumb to differing varieties of disease, dysfunction, or disability, requires a commitment to comprehensiveness that attends to the interplay of multiple interacting influences. Put another way, all of the disciplines mentioned have reliably documented influences on health, but in and of themselves, each is inherently limited because it neglects factors known to matter for health outside the discipline’s purview. Integrative health science is the alternative seeking to overcome these limitations.
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Mackenbach, Johan P. Health inequalities. Oxford University Press, 2019. http://dx.doi.org/10.1093/oso/9780198831419.001.0001.
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‘Health inequalities—persistence and change in European welfare states’ studies why frequencies of disease, disability, and premature mortality are higher among people with a lower socioeconomic position, even in countries with advanced welfare states. Drawing upon data from 30 countries covering more than three decades, it provides a comprehensive overview of trends and patterns of health inequalities, showing that these are not only ubiquitous and persistent, but also highly variable and dynamic. It provides a critical assessment of recent research into the explanation of health inequalities, discussing methodological pitfalls, summarizing findings from epidemiological, sociological, economic, and genetic studies, and reviewing nine overarching theories. Based on in-depth studies of the determinants of health inequalities in European countries, it shows that the persistence of health inequalities is due to a combination of mostly favourable changes in social stratification, massive but differential health improvements, and persistence of social inequality in material and non-material living conditions. It discusses why social inequality is so persistent, and whether welfare state reform could contribute to reducing health inequalities, and provides a systematic analysis of the inequitableness of health inequalities according to five theories of justice. It reviews recent attempts by European national governments to reduce health inequalities, showing that it is realistic to expect evidence-based policies to reduce absolute but not relative inequalities in health. This title is written for scientists and advanced students from various disciplines, as well as for public health professionals and policymakers, and is profusely illustrated and referenced.
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Clapham, Andrew. 8. Discrimination and equality. Oxford University Press, 2015. http://dx.doi.org/10.1093/actrade/9780198706168.003.0008.
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‘Discrimination and equality’ considers the prohibited grounds of discrimination (based on age, sexuality, religion, nationality, gender, and disability); what new grounds may be emerging; and when distinctions can be drawn between people reasonably and therefore legitimately. Despite the existence of obvious inequalities at birth, justice and fairness demand a system to give everyone equal access to opportunities and, in some versions, redistribute resources to ensure that the least well-off are prioritized in an attempt to achieve equality of outcomes. These philosophical approaches provide much of the ballast for the human rights rules on discrimination—and the moral case for developing these rules to achieve greater social justice globally.
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Gilleard, Chris, and Paul Higgs. Social Divisions and Later Life. Policy Press, 2020. http://dx.doi.org/10.1332/policypress/9781447338598.001.0001.
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This book is concerned with the social differences, divisions and diversity of later life. We argue that later life is no longer the marginalised category it once was. Instead, it is characterised by growing differences and divisions, including the divisions associated with class, gender, ethnicity and disability (infirmity). Many of these divides in later life echo and reflect similar divisions in working life. However, age and retirement create a new set of conditions that modifies both the nature and the consequences of these divisions. Each division, we suggest, is contingent upon both past and present influences. They are, in consequence, less sharply drawn and less clearly organised than similar divisions observed earlier in working life. Exploring these divisions and their various articulations in later life both illuminates the nature of the divisions themselves at the same time as highlighting the changing social locations that now constitute later life.