essay about disability studies

Disability Studies: Foundations & Key Concepts

This non-exhaustive reading list highlights some of the key debates and conceptual shifts in disability studies.

Disability studies emerged out of the disability civil rights movement in the late twentieth century. Early scholarship distinguishes the medical model of disability, which locates physical and mental impairments in individual bodies, from the social model, which understands the world as disabling people. The social model names both architectural and attitudinal barriers as the cause of disablement. Over the last few decades, the field has expanded to include individuals with a wide range of disabilities—not just physical conditions, but also mental and chronic ones.

This list, far from exhaustive, highlights some of the key debates and conceptual shifts in the field.  In addition to showcasing disability studies’ interdisciplinary focus, the list traces the relationship between D.S. and other minority fields of study. At its broadest, disability studies encourages scholars to value disability as a form of cultural difference. As the sources below reveal, ability should not be the default when it comes to human worth.

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Asch, Adrienne. “Recognizing Death while Affirming Life: Can End of Life Reform Uphold a Disabled Person’s Interest in Continued Life?” The Hastings Center Report , 2005

Bioethics scholar Adrienne Asch is one of the first scholars to bring a disability studies approach to bioethics. This essay addresses U.S. policy regarding decisions for end-of-life treatment and, more broadly, it critiques discourse surrounding “quality of life.” Asch attacks the slogan “better off dead than disabled” by showing how disability does not necessarily diminish one’s life. Instead, she argues, healthcare practitioners should focus on forms of care that give disabled people independence. She also offers pragmatic suggestions for how caretakers can affirm the humanity of patients receiving end-of-life treatment.

Baynton, Douglas. “Slaves, Immigrants, and Suffragists: The Uses of Disability in Citizenship Debates.” PMLA , 2005

Douglas Baynton’s groundbreaking essay foregrounds disability in accounts of American history. He assesses three U.S. debates regarding citizenship: the civil rights movement, women’s suffrage, and immigration legislation. This essay considers how disability has been used as a justification for the oppression of marginalized populations. For example, slaves were said to become “crazy” if they were granted freedom. Women were often described as mentally incapable of receiving an education. And immigrants have been cast as disabled due to racial difference. Baynton explores how attending to disability in its own right (rather than as a symptom of misogyny or racism) enables an intersectional analysis.

Brueggemann, Brenda Jo, Rosemarie Garland-Thomson, Georgina Kleege. “What Her Body Taught (Or, Teaching about and with a Disability): A Conversation.” Feminist Studies , 2005

Written from the perspective of three female scholars with disabilities, this essay is one of the first pieces of scholarship to address the presence of disabled faculty in the classroom. Brueggemann, Garland-Thomson, and Kleege explore the tension between wanting their disabilities to be normalized, but also wanting them to be present in students’ minds. In addition to discussing the difficulty of disclosure in the classroom, they explore how educators might adopt different approaches to teaching to accommodate instructors’ disabilities.

Davis, Lennard. “Crips Strike Back: The Rise of Disability Studies.” American Literary History , 1999

This essay reviews three publications that address disability studies from a humanities-based perspective. While D.S. first emerged in the social sciences, Davis makes a case for the centrality of disability studies scholarship in literary studies. More broadly, he proposes that disability studies should no longer be considered a narrow or specialized field. It’s applicable to us all.

Donaldson, Elizabeth J. “The Corpus of the Madwoman: Toward a Feminist Disability Studies Theory of Embodiment and Mental Illness.” NWSA Journal , 2002

This essay takes up the figure of the madwoman in literature. Adopting a feminist disability studies approach, Donaldson critiques the way feminist scholars read madwomen as merely symptomatic of patriarchal oppression, which discounts the reality of mental disability. She is resistant to framing disability as a metaphor and advocates for readings that consider disability alongside questions of gender.

Erevelles, Nirmala. “Race.” Keywords for Disability Studies (2015)

This short essay gives an overview of the relationship between disability studies and critical race studies. Erevelles shows how disability has been aligned with race. However, analogizing race to disability (or saying, “disability is like race”) eliminates the specificity of both identity categories. She uses special education as an example because it is a site where racial segregation takes place on the premise of disability. By attending to disabled people of color, she argues that we can achieve a more nuanced analysis, which accounts for how social forces like poverty and involuntary institutionalization exacerbate different forms of social marginalization.

Garland-Thomson, Rosemarie. “Feminist Disability Studies.” Signs , 2005

In placing feminist studies and disability studies in conversation, Garland-Thomson argues that both fields work to de-naturalize assumptions about embodiment and social roles. Her essay explores a range of pressing social issues, including selective abortion, caretaking, and reproductive rights.

Ginsburg, Faye and Rayna Rapp. “Disability Worlds.” Annual Review of Anthropology , 2013

Ginsburg and Rapp call for a critical approach to disability in the field of anthropology. Bridging the gap between the medical and anthropological fields, they shift toward understanding impairment as both environmental and cultural. They also consider what ethnography can bring to questions of disability within anthropological study.

Hershey, Laura. “Disabled Women Organize Worldwide.” o ff our backs , 2003

Recounting events from the NGO Forum on Women in China (1995) and the International Leadership Forum for Women with Disabilities in Maryland (1996), disability activist Laura Hershey moves beyond Western definitions of disability to offer a global perspective. In addition to showing how disabled women are doubly discriminated against, Hershey outlines how gender can influence the international movement for disability rights. She also considers how issues like poverty and illiteracy speak to the feminist and disability movements.

James, Jennifer C. and Cynthia Wu. “Editors’ Introduction: Race, Ethnicity, Disability, and Literature: Intersections and Interventions.” MELUS , 2006

This essay brings ethnic studies into conversation with debates regarding disability representation. From the nineteenth-century freakshow to forced sterilization, people of color have been disproportionately disabled, and James and Wu call for an intersectional approach to these complex subjectivities.

Kleege, Georgina. “Blind Rage: An Open Letter to Helen Keller.” Southwest Review , 1998

In this more personal essay, Kleege interrogates Helen Keller’s status as a disability icon. Kleege critiques the way disability has been individualized, refuting both tragic and triumphant representations of impairment. In describing her experience navigating everyday life as a blind woman, Kleege attends to the realities of living in a world not made for disabled people.

Kudlick, Catherine. “Disability History: Why We Need Another ‘Other.’” The American Historical Review , 2003

In this groundbreaking essay, Kudlick moves to situate disability studies in historical scholarship. Reframing disability as valuable, she argues that a renewed attention to bodily and mental impairments can revise our accounts of nearly all events in history—from women’s rights to labor movements. Her essay offers a comprehensive overview of books and articles pertaining to disability history, and, more specifically, deaf history.

Linker, Beth. “On the Borderland of Medical and Disability History: A Survey of Both Fields.” Bulletin of the History of Medicine, 2013

This essay addresses why the history of medicine and disability studies fail to interact. Linker begins by critiquing disability studies’ resistance to medical discourse. She argues that certain disabled people, especially those who are living with chronic conditions, often rely heavily on medical care, which is why the “medical model” should not be so readily dismissed. In turn, while disability history is typically understood as different from medical history, especially in the U.S., Linker argues for a greater need for cross-disciplinary collaboration.

Linton, Simi. “Reassigning Meaning.” Claiming Disability: Knowledge and Identity ,1988

One of the most foundational essays in the field of disability studies, Linton outlines how language has been important to naming disability as a political rather than medical category. She also addresses the problem of “overcoming rhetoric,” which fails to address disabled people’s need for access.

McRuer, Robert. “Crip Eye for the Normate Guy: Queer Theory and the Discipling of Disability Studies.” PMLA , 2005

McRuer is one of the first scholars to assess the relationship between disability and queerness. In this essay, he analyzes how the popular show The Queer Eye for the Straight Guy normalizes the disabled body. While representations of queer life often resist disability, he argues that queer and disability studies share a resistance to normalization, which should be embraced in future scholarship and activism.

Price, Margaret. Mad at School: Rhetorics of Mental Disability and Academic Life . University of Michigan, 2011

Price offers one of the first substantive accounts of mental disability, which has come belatedly to studies of physical disability. She focuses on higher education as a site that stigmatizes mental disability in its focus on rationality, cohesion, and cognitive agility. Her book offers a range of suggestions, many of which are pedagogical, for how mental disability might revitalize academic life.

Siebers, Tobin. “Disability in Theory: From Social Constructionism to the New Realism of the Body.” American Literary History , 2001

Siebers critiques the social model of disability, arguing that it fails to account for the experience of individual bodies. His term “the new realism of the body” calls for an assessment of the bodily effects of disability, which often cannot be altered through environmental transformations alone.

Wendell, Susan. “Unhealthy Disabled: Treating Chronic Illness as Disabilities.” Hypatia , 2001 

This article broadens the definition of disability to include individuals with chronic illnesses.  While people in the disability community often distinguish themselves from people who are ill, not all disabled people, she observes, are healthy. Wendell questions some of the main assumptions in disability activism and scholarship regarding social justice and reform. Dismantling the environmental effects of disablement will not always eliminate a body’s suffering, she argues.

Williamson, Bess. “Access.” Keywords for Disability Studies (2015)

This short essay gives a comprehensive account of the history of access and why it is a key term in D.S. Williamson argues that paying attention to access turns our focus away from the individual, highlighting instead the disabling makeup of the social world. Although access is easy to define, Williamson notes that it is hard to implement in practice because disabled people have conflicting needs.

Editor’s Note: This list has been updated to include publication dates.

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2 Frameworks, Models, Theories, and Experiences for Understanding Disability

Tom Shakespeare, Professor of Disability Research, Department of Population Health, London School of Hygiene and Tropical Medicine

Nicholas Watson, Chair of Disability Research, School of Social and Political Sciences, University of Glasgow

• Published: 18 March 2022
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This chapter critically engages with the underlying theories and approaches to disability that have formed the basis of disability studies since its inception. It starts with a brief historical overview of the social model of disability and its relationship to medical sociology. The authors frame their arguments by drawing on empirical research from three separate studies to answer the key question that has dogged disability research and disability studies since its first inception, namely: what are the roles of impairment and disablement in the lives of disabled people and the construction of the disability experience? The chapter ends by proposing a framework for social researchers to come together, incorporating ideas from Critical Realism and the work of Roy Bhaskar, as well as the ideas of Amartya Sen, Martha Nussbaum and the Capabilities approach.

Introduction

The social sciences are confronted with both an intellectual and practical task of improving how we study disability, especially if we are to develop theoretical and methodological approaches that are fully representative of the disability experience, in all its diversity. We suggest that applied social science must be able to provide both an understanding of what life is like for disabled people and, at the same time, a pathway for the provision of better services and the removal of the barriers and practices that serve to exclude disabled people. We need to be able to provide data and arguments that can be applied in reforming approaches to disability in the social, cultural, and political realms. The COVID-19 pandemic has made clear how urgent this reform is ( Shakespeare et al., 2022 ).

We frame our arguments drawing on empirical research from three separate studies to answer the key question that has dogged disability research and disability studies since its first inception, namely, what are the roles of impairment and disablement in the lives of disabled people and the construction of the disability experience? Traditionally, the discipline of disability studies has focused on the barriers disabled people face, leaving the subjective and personal experience of impairment to the discipline of medical sociology. This paper builds on and develops our earlier work (Shakespeare & Watson, 2001a , 2010 ; Shakespeare, 2013 ) where we have sought to create a more nuanced approach that bridges this divide.

We are not the first to attempt this. Carol Thomas ( 1999 , 2007 ), for example, combined her earlier empirical work in medical sociology with female cancer patients and carers, and with terminally ill cancer patients, with data drawn from interviews with disabled people and theoretical contributions to disability studies, to create what she called a more relational, albeit still materialist, account. She called for the development of a sociology of disablism, with a focus on barriers, plus a sociology of impairment and impairment effects, arguing that the two have to work together, but are separate entities ( Thomas, 2007 ). However, as we have argued previously, it is not easy to present impairment and disability as dichotomous experiences or fields of study ( Watson 2012 ). There is no clear divide between the private, personal experience of impairment and the public, social experience of disability. This separation, while core to materialist disability studies ( Shakespeare, 2013 ) is neither helpful nor useful.

Recognizing this is particularly important if we are to try and improve both our understanding of what it is like to live with a long-term condition and to improve opportunities for people with impairments to flourish and promote their well-being. At the outset, there is perhaps a need to reflect on why this divide exists and to try and link the two. The chapter therefore begins with a brief description of the background to the divide, focusing on the emergence of disability studies in the 1980s and 1990s. We then turn to the response of medical sociology. The next section presents some data from three studies led by ourselves, which demonstrate why the current divide cannot be sustained empirically. We also draw on other research pointing in the same direction as our own. We end the chapter by proposing a framework for social researchers to come together, incorporating ideas from critical realism and the work of Roy Bhaskar as well as the ideas of Amartya Sen and Martha Nussbaum and the capabilities approach.

Our claim is that there is a continuum between the private, personal experiences and the public, social experiences of disablement. This process of disablement is dynamic and bi-directional. Austerity and other processes can affect the personal experience of ill-health ( Ryan, 2019 ). Ill-health has an impact on capacity to work and participate, regardless of environmental barriers or settings ( Abberley, 1996 ). Disability is the result of the interaction between physical- or mental-health conditions, individual psychology, and environmental and social factors, which include culture. It is a dynamic, scalar, multi-factorial experience, which can be very different for different people with the same impairment in the same setting, let alone the billions of disabled people around the world. These differences could be the result of impairment/illness, gender, class, ethnicity, environment, personality, upbringing, social and political barriers, or even luck.

Background to the Split

The emergence of disability studies as an academic discipline, in the United Kingdom at least, can be linked to the publication of the Fundamental Principles of Disablement by the Union of the Physically Impaired Against Segregation (UPIAS) in 1976. UPIAS were part of a growing number of groups of disabled people in the 1970s who, like many other disenfranchised movements, were driven by a dissatisfaction with their prolonged and continued exclusion from the benefits of growth that had marked the post-war years. They objected to the growing inequality of their experience compared to their nondisabled peers. The Fundamental Principles was developed in the course of a polemic against the Disability Alliance, which they saw as being dominated by non-disabled academics such as Peter Townsend. This early engagement with academia together with the Tavistock research at Le Court Cheshire Home published as A Life Apart ( Miller & Gwynne, 1972 ), explains some of the animosity between disability studies, the disabled people’s movement, and medical sociology ( Watson 2019 ).

UPIAS were brought together by Paul Hunt, a resident in the Le Court Cheshire Home, and Vic Finkelstein, an emigree from apartheid South Africa ( Campbell & Oliver, 1996 ). They sought to change the way that people looked at the problem of disability and to politicize it. UPIAS built on and developed ideas on disability that had emerged in the post war period to provide an alternative perspective to define the social problems faced by disabled people, and importantly their origins and their solution. The Fundamental Principles was the origin of the dualism that comprises what Oliver (1983) later termed the “social model of disability”—impairment versus disability. Impairment was defined as “lacking part of or all of a limb, or having a defective limb, organism or mechanism of the body” and disability as “the disadvantage or restriction of activity caused by contemporary organisation which takes no or little account of people who have physical impairments and thus excludes them from the mainstream of social activities.”

Finkelstein and Hunt almost certainly came up with the social model, but Michael Oliver took these ideas and formalized them (1983, 1990). He re-created disability as a problem of social justice, locating the origins of disablement within the state, and in particular state-led capitalism and the mode of production. The promise afforded by the welfare state was not being achieved because the way it was delivered was seen as restricting individual autonomy: it was failing to deliver the liberation that was promised. For Oliver, Finkelstein, Abberley, Barnes, and other early disability studies scholars, special schools, care homes, rehabilitation units, hospitals, segregated workshops, and other services all served to disadvantage and to segregate disabled people. They benefitted non-disabled professionals more than they did the purported beneficiaries. These structures formed part of the oppressive regimes that excluded disabled people on the grounds that they were not able to work as fast or produce the equivalent of their nondisabled peers. Other key developments included the emergence of the emancipatory research paradigm facilitating a politics of the possible by confronting social oppression at whatever levels it occurred ( Oliver, 1992 ).

The social model of disability was key part of the development of disability politics, especially in the United Kingdom ( Shakespeare & Watson, 2001b ). Vic Finkelstein took social model thinking and promoted it vigorously at the Singapore World Congress of Disabled People’s International ( Driedger, 1989 ). By locating disability as the outcome of the way that society treats and deals with people who have an impairment, the focus shifted from an individual analysis to the social, economic, and cultural factors that create the problem. The new disability politics that emerged alongside the social model called for changes at the level of meaning and culture attached to disability, as well as changes in the way that professionals, caregivers, and others interacted with disabled people, demanding structural changes at the macro level. While initially developed in the United Kingdom, the influence of the social model extended far beyond and, largely thanks to activism within Rehabilitation International , eventually influenced a worldwide movement ( Driedger, 1989 ). Across the globe the social model became key to the explanation of disability ( Charlton, 1998 ).

The picture in the United States is somewhat different. Unlike the rest of the world, the disabled peoples’ movement in the United States never really fully endorsed the social model of disability ( Burke & Barnes, 2018a ). Heavily influenced by other civil rights movements, it broadly followed what Hahn has termed the “minority group model”, which sees “attitudinal discrimination as the principal problem facing disabled persons” (1996, p. 41). While early disability activists in the United States emphasized the role of barriers in constraining the lives of disabled people, rather than locating their origin in medicalization and capitalism, as the social model does, stigmatizing attitudes were seen as the chief causative factor. As a result, the United States has taken a much more individualistic approach, emphasizing identity and identification and the use of lawsuits to punish individual acts of discrimination ( Burke & Barnes, 2018b ). It lacks the structural and materialist focus of the social model.

The academic study of disability in the United States has also followed a different trajectory from that found in the United Kingdom and in the Nordic countries. In the United Kingdom, disability studies grew out of the social sciences, particularly sociology and social policy, but in the United States, it is more likely to be located in the arts and humanities ( Vehmas & Watson, 2014 ). Disability studies in North America has been much more eclectic and multi-disciplinary in its approach and has drawn heavily on, and drawn links with, other identity‐based, rights‐influenced approaches, especially critical race, feminist, and queer theory. There has as a consequence been much more emphasis on the cultural production of disability.

There was a real sense of optimism within the social model, a fact that is often overlooked. Rather than focus on how awful life was as a disabled person, the focus shifted to how things could be changed and how life could be improved. It is what Levitas (2013) might describe as a utopic model, providing an approach through which the negatives in human experience can be removed. It offered a way of thinking about disability in an holistic way, linking and integrating the economic, social, cultural, and environmental process that disable people with impairments. Finkelstein (1988) even posited such a utopia in an article in which he imagined a community where everything was accessible, and disability disappeared. The social model marked a sea change in the way disability was represented; spend any time with organizations of disabled people, and you will soon meet people who will claim that their lives were turned around by the social model of disability. In relocating the problem of disability away from the individual and toward the wider social structure, the social model enabled people to feel better about themselves. Simple, direct, and effective, it is a really powerful and life-affirming model, it is a charismatic idea, what Hasler described as “our one big idea” (1993).

It is important to acknowledge the impact of this model, not just in United Kingdom but around the world. The last quarter of the 20th century saw radical changes for disabled people, at least in the Global North. In the United Kingdom, for example, the disabled people’s movement used the concept of the social model in their campaigns against barriers and for the establishment of antidiscrimination legislation ( Barnes, 1991 ), which culminated in the passing of the Disability Discrimination Act (1995), later incorporated into the 2010 Single Equality Act. Disability is now accepted as a protected characteristic, alongside gender, ethnicity, sexuality, among others. The closure of long-stay hospitals and other segregated settings and the normative assumptions around the rights of disabled people to participation and toward inclusion, all achieved as a result of the actions of the disabled people’s movement, are a good thing. More than that actually, they are a triumph: they mark a turning point in human history, and should be celebrated as such.

The social model of disability, or at least a barriers-focused approach, is, in policy terms, the dominant model of disability. Thanks to the structural influence of the social model, the World Health Organization changed their own categorization of disability, creating the International Classification of Functioning, Disability and Health ( WHO 2001 ), in which environmental factors are key. In fact, the social model forms the basis of definitions across a range of different settings, from the local right up to the national and the transnational, informing policy development in the European Union, and the World Trade Organization. At the United Nations, it underpins the Convention on the Rights of Persons with Disabilities (2006). Although it might not have completely changed practices, the social model has played a significant part in altering the discourse that surrounds disability, not just in the Global North, but internationally and multinationally and at the highest levels ( WHO, 2011 ). Not a bad impact for a group of disgruntled residents from a care home.

The influence also extends well beyond disability, the demands for co-production, personalization, and personal budgets, asset-based approaches once so radical and part of the disabled people’s movement’s demand for inclusion, are now mainstreamed and are part of the public-service reform agenda ( Christie, 2011 ), although their origin and the debt owed to the Disabled People’s Movement are rarely discussed or acknowledged. It is also true that much of the original radical element of the calls have been diluted.

The success, however, in transforming the way that policy portrays the problem of disability has not resulted in the institutional change that was hoped for. Cases such as Winterbourne View ( Flynne & Citerella, 2013 ), the death of Connor Sparrowhawk ( Ryan, 2017 ) and other similar outrages still occur far too often. Further, despite over 20 years of anti-discrimination legislation in the United Kingdom, disabled people are still far more likely than their non-disabled peers to be living in poverty. A recent report for the Social Metrics Commission found that 48% of people who live in poverty in the United Kingdom are either disabled themselves or live in a family where someone is disabled (2019). Inequalities in work still persist and the disability employment gap is larger than for any other protected characteristic ( DWP, 2015 ). Disabled people still face barriers throughout their lives: housing is inadequate, as too is childcare, and many disabled people are unable to access the right to form relationships. Life is extremely challenging for disabled people, particularly those in the Global South ( WHO, 2011 ; Grech & Soldatic, 2016 ).

Violence against disabled people continues to be high. In the United Kingdom, for example, research by the disability organization Mencap indicates that 88% of people with a learning disability had experienced a hate crime in the previous 12 months and that 66% of those were frequent victims, with nearly a third bullied on a daily or weekly basis. The impact this has on people’s well-being is now emerging ( Wiseman & Watson, 2021 ). Given these and many other inequalities, it is no wonder that people with learning disabilities have as many health conditions at age 20 and over as the rest of the population aged 50 and over, and live 20 years less than their nondisabled peers ( Kinner et al., 2018 ).

Seeing these statistics it is easy to see why a strong, barriers approach is appealing. However, the social model has come under criticism for its failure to account for the bodily dimensions of both disablement and impairment—impacting pain, incontinence, sexual function, and fatigue. These become marginalized within the rhetoric associated with the social model ( Shakespeare & Watson, 2001 ; Morris, 1991 ; Crow, 1996 ). It also homogenizes the disability experience, denying differences in terms of gender, age, ethnicity, culture, class, and geographical location ( Shakespeare & Watson, 2001 ).

Carol Thomas, in an attempt to meet these criticisms, has developed what she describes as a relational social model. Her revisions involve the incorporation of what she terms impairment effects, and psycho-emotional disablement. Impairment effects are “restrictions of bodily activity that are directly attributable to bodily variations designated impairments rather than those imposed upon people” ( Thomas, 2007 , p. 136). She employs the term psycho-emotional disablism to distinguish between barriers to doing and barriers to being. These are:

the impacts and effects of the social behaviours that are enacted between the “impaired” and the “non-impaired,” for example in familial relationships, in interactions in communities, and in encounters with health, welfare and educational services. ( Thomas, 2004 )

Thomas (2012) has argued that the sociology of disability should present disability—like gender—as a key dimension of global social divisions and inequity that can be approached from a multiplicity of analytical directions, using a rich mix of theoretical perspectives, methodologies, and research techniques. While attractive, there are numerous problems with this formulation, not least that, unlike disability, there are no rational reasons to consider homosexuality, ethnicity, or gender undesirable characteristics whatever the social context, but there are many impairments that can reasonably be seen as undesirable ( Shakespeare, 2013 , Vehmas & Watson, 2014 ). Motor neurone disease, depression, or spinal cord injury cause suffering irrespective of the social or cultural environment.

There is also a danger that impairment and disablement become envisaged as dual systems rather than a complex interwoven matrix, and a debate about boundary maintenance can emerge. Is this a disability issue or is this an impairment issue? Shakespeare (2013) argues it is almost impossible to divide complex experiences into “social” and “medical.” In fact, anyone who does empirical research with disabled people experiences this difficulty. Lived experience is messy: while social structures undoubtedly impact people with impairments, extricating and labelling different factors at work is hard. For example, above we highlighted evidence that people with intellectual disabilities, on average, live shorter lives than non-disabled people. Some of this is because the impairment itself is associated with a shorter life span. Some of it is associated with poverty, housing, and social exclusion ( Wiseman & Watson, 2021 ). Some of it is associated with failures of health and social care services, for example the inadequate care that has led to the deaths of people with a learning disability living in care homes or hospitals ( Ryan, 2017 ). Some of it is associated with eating poorer food in great quantity, sometimes because care and support staff lack time or skills to cook better. Some of this premature mortality of people with profound and multiple intellectual disabilities results from aspiration pneumonia, partly caused by food going down the wrong way. Some of this may be the result of being fed too quickly by a poorly paid and inadequately managed care worker who is in a hurry, and some of which is very hard to avoid in a person who has profound intellectual disability. It would be a very difficult task to neatly divide social and medical factors.

Exploring the Divide

These and other critiques were used within medical sociology in the United Kingdom to reject, almost outright, the claims of the social model theorists. The early 1990s saw two key, and very bitter, engagements between leading UK medical sociologists and disability scholars, one on research, later published as a special issue in what was then called Disability, Handicap and Society (1992), and the other on theory published in a collection edited by Barnes and Mercer, Exploring the Divide (1996).

Given the very strong support within British medical sociology for a materialist understanding of the causes of ill health and the links between poverty and health inequality ( Whitehead et al., 1990 ), it is perhaps surprising that the claims of scholars such as Oliver and Barnes and the disabled people’s movement were dismissed out of hand. When it came to disability, medical sociology simply failed to follow the same social deterministic account that it applied to poverty and ill health. This was equally true in the post-structuralist or postmodern accounts that were appearing in the then newly emerging sociology of the body, where again the disabled body was naturalized ( Shilling, 1993 ). Physical inadequacy was taken as the defining element of disabled people’s experiences. For other inequality groups, the tendency within sociology was to deconstruct it, whereas if it was disability, it naturalized it.

There has of course been a change in this, but the dominant perspective within medical sociology at that time was to focus on the experience of living with a chronic illness. Symbolic interactionist and phenominological accounts predominated developing concepts such as biographical disruption ( Bury, 1982 ), narrative reconstruction ( Williams, 1984 ), and the impact of chronic illness on the self ( Charmaz, 1983 ). The approaches explored and documented the impact of chronic illness on people’s sense of identity and its influence on daily living and social relationships.

Work in this paradigm focuses on the difficulties that chronic conditions raise in interpersonal relationships and how individuals negotiate their way through these difficulties. Management problems are at the forefront of much of the analysis; the emphasis is on the process of “normalization” and the tactics employed by individuals in “symptom control.”

Medical sociology has provided some very useful avenues of research. Biographical disruption remains a very useful concept and stigma is a perennial interest. Studies exploring narrative reconstruction or the experiences of living with a chronic condition provide important and vital perspectives on the lives of disabled people ( Reeve et al., 2010 ; Wilson, 2007 ). But this does not provide any analysis as to what happens after the biography has been disrupted, the identity spoiled, or the narrative reconstructed. Further impairment and social suffering are not a reliable or useful indicator of social justice. The uncritical subjectivism that emerges does not allow an unpacking or exploration of social oppression or provide avenues for tackling that oppression. These researchers failed to examine cultural meanings ascribed to impairments or chronic conditions or address why disabled people felt excluded. They presented disabled people as “vulnerable” and failed to explore fully the cultural context within which the experience of social isolation, segregation, and poor self-image are lived. As Gareth Williams (1996) pointed out, prior to the emergence of disability studies it was rare to see disability discussed in terms of equality, oppression, violence, or discrimination. It took the disability studies approach, and the emergence of disabled scholars (e.g., Oliver, Barnes, Abberley, Morris, Thomas, Roulstone, Shakespeare, Watson), to bring this to the fore. Ironically, many of the “chronic illness” tendency in medical sociology had themselves personal experience of chronic illness but failed to politicize it.

Bringing Them Together

Both approaches described above are incomplete, and neither forms the basis for an adequate theory or methodology through which to explore disability. In this next section we present data from three very diverse studies on disability, selected because they represent different elements of the disability experience, to show the interconnectedness and diversity of the disability experience and of life with an impairment. The first draws on data from a mixed-methods study of people with restricted growth conditions living in the north of England ( Thompson et al., 2010 ). The second draws data from a study based on 28 interviews with older people with CP ( Paterson & Watson, 2013 .) This is a group traditionally thought of as representing a so-called static, lifelong condition. The third draws on study based on series of longitudinal interviews with 40 people and their families with Motor Neurone Disease (or Amyotrophic Lateral Sclerosis as it is termed in North America) ( Ferrie & Watson, 2015 ).

Restricted Growth: Bio-psycho-social Disablement

The following discussion is based on a mixed-methods study of people with restricted growth conditions living in the north of England (n = 81), more than half of whom had achondroplasia, the most common restricted-growth condition ( Thompson et al., 2010 ). The majority of people with restricted growth live independently, are intellectually unaffected, and do not face communication barriers. Few use wheelchairs. Culturally, therefore, people with restricted growth do not have many of the markers that signal membership within the disability category. Employment rates (57%) in this study were only slightly lower than the non-disabled average (61%). Yet, 60% claimed Disability Living Allowance, and 56% of the sample had a Blue Badge for parking. This suggests that disability identity is strategic: we also found that younger people in the study were more likely to think of themselves as “different,” and older people, who had more mobility impairments, were more likely to think of themselves as “disabled.”

Key points in the biography where disablement impinges are starting school, teenage years, becoming more impaired in middle age, and retirement. The major disabling factor for all our respondents was the attitude of others, particularly staring and mockery. This impinged when the child went to school, or when the young adult was hoping to date potential partners, or, for all respondents, in public settings.

This was also part of other people’s expectations of them. As described by one participant:

just prior to my leaving [school] I got called into the headmistress’s study and she said “we’ve been thinking about what you’re going to do and I think you should stay home and help mother,” those were her words. (female, age 78)

Although this may be a dated reaction, people today were advised not to go into professions, such as teaching and medicine, and were steered toward clerical work, nursery nursing, and classroom aide roles. We found that, as a consequence, respondents were more likely to be overqualified for their roles, which were often in clerical or subordinate positions. Having gotten a job, proved themselves, and managed environments, respondents were reluctant to risk what they had achieved by going for promotion. This was not because they were not capable, and it was often not because of direct discrimination. As a result of not being encouraged and supported, and because of their fears, they did not push themselves to have a developing career. Like some people with other impairments like epilepsy or visual impairment, they were in work, but concentrated in lower social positions: these disabled people face a “glass staircase,” not a glass ceiling.

A typical example of bodily restrictions—what Thomas (1999) might call impairment effects—was the following:

and I think my back problem, pains in my legs, it’s just deteriorated and deteriorated all the time, in the last 3 years. (female, age 33)

Almost all had pain and mobility limitation; often these physical difficulties resulted in mental-health difficulties as people negotiated limitations and dependencies:

I get, well, what I consider depression. Because [husband’s] deteriorated quite badly and our lives are changing and it’s just adapting to the changes, coming to terms with the changes. (female, age 49, husband has same condition)

Many were forced to retire early, in their fifties, due to physical difficulties, with resulting impacts on their economic situation:

… because I’d have liked to work till I was 65. That’s annoyed me, that I can’t… that was hard to accept. (male, age 57, retired due to ill health at 52)

This study shows that disability identity is dynamic and changing. It is the result of medical, social, cultural, and psychological factors. It shifts over the life course. Indeed, the team interviewed two women in the same northern town who had the same impairment and socio-economic situation. One felt that restricted growth had not harmed her life: she was working, married, with children. The other felt that restricted growth had ruined her life: she was single, unemployed, and lonely. The difference could be put down to early childhood experiences, personality, or luck. But both faced many of the same activity limitations and participation restrictions, to use the language of the ICF ( WHO, 2001 ).

Aging and Cerebral Palsy

The experience of impairment and of embodiment was central as people aged with CP. Some of the comments relate to what is called primary aging: these are the “normal; changes associated with growing old” ( Haak et al., 2009 ). People described how carrying out physical tasks and activities becomes more difficult with age:

Everything just gets harder as you get older and I’m getting pains in my legs that I never had. Now I might turn and it’s like a cramp just for about 5 or 10 seconds but it kind of stops you in your tracks you know, even just turning and I’ve obviously pulled a muscle or something and thing like that but it does definitely get harder and my energy levels are not as good.

It is hard to distinguish this sort of aging from aging experienced by non-disabled people. There may be a quantitative difference, but qualitatively there is no separate status for people with impairment. The language is similar to that found in other studies, such as the work of Cunningham-Burley and Backett Milburn (2002) .

What distinguishes this experience is the process known as secondary aging, the aging associated with having cerebral palsy. This was a much more dominant topic during the interviews. As one informant neatly put it,

Everything just gets harder as you get older and I’m getting pains in my legs that I never had … … …. We wear out quicker. There’s no doubt about it.

Like restricted growth, CP is often described as a static condition, but in reality it is a condition that changes, and these changes can, for some, be dramatic, creating what Bury would describe as a biographical disruption:

In the past, before I was deteriorating with the cerebral palsy I knew my limits and worked within my limits so what happens is when you do deteriorate to the extent that I have, you have to re-educate yourself again and really it’s a sense like as though you’ve not had a disability before compared to the level of disability now. You know if that kind of makes any sense but that’s the way I’ve kind of approached it, because you’ve had to start again. It has not made me give up but you still have to start again.

One of the key impairment changes that drove this disruption was around mobility—specifically walking and balance. As people aged they got less and less able to walk, and by the time of the interviews all but one of the participants who could in the past walk and had some ability to stand, now no longer could. Some stopped walking because of a fall, but the most typical cause was a prolonged stay in bed or hospital.

Calum: “ … I was able to walk until 11 years ago.” Key Worker: And then you just woke up didn’t you one morning and he was unable to walk. “I think I got a virus.” Key Worker: Because when you went to your bed and you got up you couldn’t walk anymore? Calum: “Yes.” Key Worker: It was obviously a big shock. Interviewer: Yes it must have been a big shock Calum: “Yes it was big shock to my wife as well and my sons.”

This is of course interesting in and of itself, as too are participants’ comments about how they rebuilt their lives and how, for some, moving into a chair was, in terms of their mobility, actually enabling rather than disabling because they were able to travel further. However, what really stood out was that was nobody was offered support when they started falling, or rehabilitation once they had lost the ability to walk. Which other group would this happen to? It is hard think of any other group where there would be no attempt to help them walk, or at least to boost their mobility. This had real knock-on effects in their ability to live independently, to work and to participate in day-to-day activities. For many, after losing the ability to walk, so too went the ability to transfer in or out of the chair, and with that the ability to toilet independently. We also found a lot of discrimination: people being forced out of the labor market, and when they went to their doctor, all the doctor did was offer to sign them off. Many people wanted to carry on working, but at no point were they offered vocational rehabilitation or were changes in working practice suggested. When people complained that changes in their impairment meant that they were now living in unsuitable housing with inadequate support often the only alternative offered was to move into a care home, a move many did not want to make.

The problems associated with aging with CP are not widely recognized, and support services do not plan for the consequences of CP as a long-term condition. CP is seen as a problem of pediatrics, not life-long complications. We talked to neurologists about this, and they told us it was a care-of-the-elderly problem; when we asked specialists in care of the elderly, they told us it was a neurology problem.

Motor Neurone Disease (MND)

In this next section we look at the intersection between the medical and the biological in people with MND and draw on data from a qualitative study based on interviews with 40 people who had the condition ( Ferrie & Watson, 2015 ). Motor Neuron Disease (MND) encompasses several different conditions whose common feature is the premature degeneration of motor nerves and in the United States is often referred to as Amyotrophic Lateral Sclerosis (ALS). Locock et al. (2009) in their qualitative study exploring the experiences of people with MND argued that for this condition, while some biographical disruption and repair may be present, so great were the effects of MND that rather than what Bury termed “biographical disruption” it became “biographical abruption.” There is no denying that MND is a brutal health condition, and in our work on MND we found similar comments to those of Locock et al. People talked about how they could no longer do things that were important to them, such as knitting, woodwork, or another hobby or activity, and that this greatly affected who they were and how they self-identified. With an average life expectancy of 18 months after diagnosis, a poorly defined trajectory, and little or no chance of recovery, biographical abruption may be a distinctive feature of this condition.

However, while it is possible to ascribe this abruption to MND, there is a danger that we might ignore, or at least underplay, some of the surrounding issues. Although biographical abruption may often be present, there is a social element to its production. For example, some local authorities refused to fund adaptations if they felt that there would be no benefit for at least three or in some cases five years:

Martin: “When Katie was first diagnosed… em… it wasn’t good at all. We had a terrible run in with… we had wanted a stair lift fitted and they wouldn’t do it. Despite being approached by the MSP and everything, they wouldn’t do it … eh … ” Jo: “And what reason did they give?” Martin: “They didn’t think basically… and again this five year thing came into the equation… to cut a long story short they basically didn’t think they would get their money’s worth out of it.”

There were also lots of examples of where disablement impacted on people’s lives. Respondents talked about not being able to go out, to join friends for meals, or to go to other social events.

Kate: when was the last time you took your wife out … ? Phillip: But it is difficult because I have got splints which mean that I can walk a bit further in them than I can without the splints… however, if there is a step, a kerb, stairs they are dreadful. Or if there is a sloping bit of ground they are dreadful… or if the ground is wet it is terrible… So, I really have to … JF: So, that really limits their use … Phillip: I’ve got to ask where am I going … ? Can I do that? Is there a step there … ? Everything has got to be planned like a military operation … Phillip and his wife Kate

The intersection between the experience of impairment and social barriers was common. Sometimes the reluctance to venture out was the result of impairment-related issues, such as fear of choking, but there was also a lot of discussion around barriers: these could be both physical, as described above, and also cultural, in that respondents did not want people to see them as they now were. There is still a stigma attached to a condition such as MND, much of which the informants described as “felt” rather than “enacted” ( Scambler, 2004 ), This served to constrain and deny people the opportunity to participate.

Rachel: I feel embarrassed at neighbours seeing me. Embarrassed at friends seeing me. Crazy! Why should I? But I do. Jo: Because of their reaction to you? Rachel ‘No! they’ve been great, it’s me. I’m embarrassed Jo: But if it was them … Rachel: I‘d be there, with them! But the shoe is on my foot and I’m embarrassed to have this illness. I’d rather die tomorrow that have to deal with this. You have to mentally adjust all the time, its too much.

The sociology of chronic illness, with its focus on biographical issues to do with meaning and experience and the stigma associated with it would benefit from a more explicit linking to the political agenda, Williams (2010) . This is a point often overlooked, and a key point made by Goffman in the conclusion to Stigma , when he argued,

Sociologically, the central issue concerning these groups [the stigmatized] is their place in the social structure; the contingencies these persons encounter in face-to-face interaction is only part of the problem, and something that cannot itself be fully understood without reference to the history, the political development and the current policies of the group. ( Goffman, 1968 , p. 151)

Any sociological account of impairment must explore these inequalities, their impact on how people value themselves, and the suffering and restricted flourishing they engender in disabled people. Impairment is not always in and of itself deterministic, but as it gets worse it does have the potential not only to lead to higher levels of disablement, but also to have an even greater impact on the self. On average, the greater the level of impairment, the more the opportunity for both exists. Fatigue, pain, and impairment contribute to exclusion, an exclusion that cannot be extracted from the overall experience of disablism. But the roles of negative attitudes and structures are also central. By ignoring the lived experience of having an impairment, of aging with an impairment, or the very demanding and all-embracing impact of living with a progressive condition, any exploration of disability runs the danger of ignoring an important and central part of disabled people’s lives.

The sociology of chronic illness, with its focus on biographical issues to do with meaning and experience, would also benefit from a more explicit linking of these themes to the political agenda, as Williams (2010) and others have argued. Both provide a necessary corrective to each other, but as things currently stand, by not working together they are not achieving the impact they should

How can we best theorize disability? The International Classification of Functioning, Disability and Health ( WHO, 2001 ) brings together the medical and social models, giving more prominent place to environmental factors, but has failed to analyze personal factors, or to account for the role of culture. Equally, in the search for intellectual resources, we have not found critical disability studies very useful ( Vehmas & Watson, 2014 ). The focus on cultural discourse and the assumption of able-bodiedness is useful, but less helpful when it comes to understanding material social relations ( Shakespeare, 2013 ).

We consider that the idea of critical realism and capability theory could help us better understand disablement. Critical realism distinguishes between the “real” and “observable” world: some things we can see and feel, but other structural relations are not visible. However, we can infer the existence of these real underlying mechanisms from their effects in the observable world. Critical realism also suggests research that uses a laminar approach to explore the various strata of experience in an interactive manner. Bhaskar and Danermark (2006) argue that adopting a critical realist approach allows research on disability on a range of different levels from the cellular to the cultural. For example, the lives of people with restricted growth could be understood according to the schema we present in Table 2.1 .

Similar, but subtly different, laminar tables might be relevant to people with cerebral palsy or MND. For example, dwarfism has a particular cultural valence that these other conditions might lack. However, CP may be associated with speech impediments, which members of the public may associate with inferiority or intellectual disability, while MND has an association with dying, which is not relevant to CP or restricted growth. While this gives an approach that can be used to more generally uncover and explore disability across a much broader perspective, it does not provide us with the outcomes-focused agenda we need if we are to develop an adequate model of disability and chronic illness. But it does suggest that interventions at different levels might be needed: the medical, the rehabilitative, the psychological, the legal, and so on.

In order to understand what could be done to improve lives, it might also be useful to draw on capability theory (CT). It has also been given much attention in disability studies ( Mitra & Ruger, 2017 ; Mitra, 2017 ; Nussbaum, 2006 ; Brunner, 2019 ), and it is one of the few philosophical theories that engages with issues, including disability, in a manner that is not only theoretically illuminating but also politically practical. Arising from the work of Amartya Sen and then Martha Nussbaum and others ( Robeyns, 2007 ), CT aims to improve capabilities, which are the freedoms to act. Functionings refer to states of the person or community, what they are able to do and what they are, and things such as literacy, health, and mobility ( Anderson, 2010 ). Capabilities are real freedoms or opportunities to achieve functionings. They are the set of things that people can do and can be. For example, moving would be a function, and capabilities would describe the opportunity for movement ( Robeyns, 2007 ). Functionings are therefore a subset of the capability set.

CT focuses on what people are actually able to do and be and contrasts with other approaches, which emphasize what people possess or do not possess, have done, or how they feel. In CT, well-being is evaluated in terms of how people are able to live, and it enables an analysis of the “actual opportunities a person has” for example in health, in education or in community engagement ( Sen, 2009 , p. 253). CT highlights that people will choose different goods and should have the freedom to do so. CT also emphasizes what Sen originally called “Conversion handicap”: the barriers and difficulties that mean that disabled people have additional costs when it comes to converting resources into functionings, meaning that the same income goes less far (this is one of the big difficulties for universal basic income schemes). These conversion factors include individual, social, and structural difficulties.

We need an approach that will provide us with the outcomes-focused agenda if we are to develop an adequate model of disability and chronic illness. Andrew Sayer (2011) argues that to have effect, sociology needs careful evaluative descriptions that identify both flourishing and suffering as well as their source. Without these, we cannot develop an adequate account of social life. We need some consistency in the way valuations and values are understood in each of these categories. We need a normative framework through which we can work, it is not enough to talk about biographical disruption or the experience of chronic illness; they have to be linked to processes, structures, or actions that improve outcomes.

In the search for a normative framework, it could be thought that human rights, and in particular the Convention on the Rights of Persons with Disabilities (2006), provides an ample “moral compass.” However, rights-based approaches are individualist: a person seeks fulfilment of their personal rights and can take a legal case if these are not respected. They do not, as Rose argues, provide a ‘means of formulating reforms or for implementing such reforms’ (1985;214). In terms of disability, families and others affected by disability are almost completely excluded from the Convention. Nor is it clear how the Convention can be emancipatory for those who are unable to compete in the economic marketplace. If barriers are removed, then many disabled people, but not all, will be able to earn their living and be independent, thanks to the market. What happens to those with more profound impairments who cannot compete? And indeed, rights-based approaches may empower many disabled people so they access education, employment, and community living, but then may leave them unequal and unable to flourish ( Fraser, 2013 ).

Critical realism has the potential to be emancipatory, because it emphasizes mechanisms underlying experiences—mechanisms that can be changed and improved. Capability theory talks about human development as a process of increasing the freedom that people have to act. We consider that the combination of these approaches has the potential to support the construction, not just of a more adequate model of disability, but also a roadmap for its transformation.

We support an engaged, empirically grounded disability research agenda. We consider the two major aspects of this endeavor are to explore the lived experience of disability in different settings and to explore disabling barriers. Obviously, disabling barriers will impact lived experiences, and vice versa.

The experience of disablement is far more complex than the 1976 framing of impairment and disability allowed for, or even Michael Oliver’s 1990 sociological exploration, of the social model. Nor does the 2001 International Classification of Functioning, Disability and Health resolve the difficulties described in this chapter. Thomas’s (2007) recommendation that the sociology of illness should be separate from disability studies is not a solution either. We consider that biological, psychological, and social factors need to be understood in their interrelation. We believe that these interactions will impact people with different impairments differently, and that other dimensions of their biographies—gender, class, ethnicity—will also play a role.

The aim of this paper was to develop theoretical and methodological approaches that are able to fully represent the disability experience, in all its diversity. We have argued that our understanding should be able to not only identify mechanisms, predominantly social, economic, and cultural, that operate to exclude and disadvantage different people who have impairments, but also point to ways they can be reconfigured to enable disabled people to flourish. This requires a multi-layered approach, and a sociology of disability has to engage with the medical and health sciences, and other disciplines. The development and growth of technology, communication, and interaction has the potential to liberate many people if they can access them, just as improvements in healthcare enable more people with illness and impairment to survive and lead flourishing lives. For these to be liberating and to help empower and include disabled people, they have to work with people and meet the needs of disabled people. This is where sociology, and social policy, can come in and help to create a framework through which these potentials can be realized.

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• v.37(2); 2020

Language: English | German

Disability & Diversity studies as a professional basis for diversity-aware education and training in medicine

Disability & diversity studies als fachliche basis für eine diversitätssensible aus- und weiterbildung in der medizin, susanne dungs.

1 FH Kärnten, Disability & Diversity Studies für Berufstätige, Klagenfurt, Austria

Christine Pichler

Ralf reiche.

2 FH Kärnten, Gesundheitsmanagement, Feldkirchen in Kärnten, Austria

The “Disability and Diversity Studies“ (DDS) are research fields which, similar to social work, deal with social inclusion and exclusion processes. Dimensions of disability and diversity can lead to disadvantages and inequalities in the individual life and social coexistence of people. The DDS examine these inequalities and identify intersectional relationships between diversity categories. The concept of intersectionality opens up the view of the restriction of diversities, which can lead to the intensification of inequalities and multiple discriminations: e. g., in the case of being a woman and member of an ethnic minority. The starting point is therefore not the difference category per se, but the intersection of several categories [ 5 ]. This knowledge of categorizing classification and exclusion in their intersectionality is fundamental for the dissolution of social, societal, political and economic inequality. The DDS bachelor's program at the Carinthia University of Applied Sciences, which combines Disability and Diversity Studies, focuses on these research areas and develops practical solutions.

In medical education and training, too, it is essential that teachers and students, but also patients, recognise the complex interrelationships of divergences in medical practice and the resulting stigma that must be removed. The DDS can serve as a basis for taking these interrelationships into account, for incorporating creative approaches to solutions and a diversity-sensitive attitude into the doctor-patient relationship and medical treatment. For example, the first and so far only World Report on Disability from 2011 noted a still existing negative infiltration of doctor-patient-interactions through stigmatization of persons with disabilities and deviations. Misunderstandings, lack of knowledge and wrong presettings can endanger the treatment [ 32 ].

In order to create the framework conditions for an appropriate consideration of diversity and disability in the program, it is necessary to impart six core competencies to prospective physicians [ 20 ]: If possible, this should always be designed in the respective training courses of all health care professions in a patient-centred manner, across all occupational groups and under the premise “nothing for us without us“ [ 1 ]. This corresponds to the principles of Disability Studies.

Zusammenfassung

Die „Disability & Diversity Studies“ (DDS) sind Forschungsrichtungen, die sich, ähnlich der Sozialen Arbeit, mit gesellschaftlichen Ein- und Ausschließungsprozessen befassen. Dimensionen von Behinderung und Vielfalt können im individuellen Leben und gesellschaftlichen Zusammenleben von Menschen zu Benachteiligungen und Ungleichheiten führen. Die DDS untersuchen diese Ungleichheiten und identifizieren intersektionale Zusammenhänge zwischen Diversitätskategorien. Das Konzept der Intersektionalität eröffnet die Sicht auf die Ver-schränkung von Diversitäten, was die Verstärkung von Ungleichheiten und Mehrfachdiskriminierungen zur Folge haben kann: bspw. als Frau und als ethnische Minderheit. Der Ausgangspunkt ist demnach nicht die Differenzkategorie an sich, sondern der Kreuzungspunkt mehrerer Kategorien [ 5 ]. Dieses Wissen über kategorisierende(n) Einordnung und Ausschluss in ihrer Intersektionalität ist grundlegend für das Auflösen von sozialer, gesellschaftlicher, politischer und wirtschaftlicher Ungleichheit. Der Bachelorstudiengang DDS der Fachhochschule Kärnten, in dem die Disability und die Diversity Studies miteinander verknüpft wurden, zentriert sich um diese Forschungsrichtungen und erarbeitet daraus praktische Lösungsansätze.

Auch in der medizinischen Aus- und Weiterbildung ist es grundlegend, dass Lehrende und Lernende, aber auch Patient*innen erkennen, welche komplexen Zusammenhänge von Diversitäten in der medizinischen Praxis wirksam sind und welche daraus resultierenden Stigmata es abzutragen gilt. Die DDS können als Basis dienen, um diese Zusammenhänge zu berücksichtigen, kreative Lösungsansätze und eine diversitätssensible Haltung in das Ärzt*innen-Patient*innen-Verhältnis und die medizinische Behandlung einfließen zu lassen. So konstatierte der erste und bislang auch einzige Weltbericht über Behinderung aus dem Jahr 2011 eine noch bestehende negative Infiltration der Ärzt*innen und Patent*innen-Interaktionen durch Stigmatisierung von Personen mit Behinderungen und Abweichungen. Missverständnisse, fehlende Kenntnisse und falsche Voreinstellungen können die Behandlung gefährden [ 32 ].

Um die Rahmenbedingungen für eine angemessene Berücksichtigung von Diversität und Disability in den Studiengängen zu schaffen, ist es erforderlich, angehenden Ärzt*innen in ihren Ausbildungen sechs Kernkompetenzen zu vermitteln [ 20 ]: Wenn möglich sollte dies in den jeweiligen Ausbildungen aller Gesundheitsberufe berufsgruppenübergreifend stets patient*innenzentriert unter der Prämisse „nothing for us without us“ konzipiert sein [ 1 ]. Dies entspricht den Prinzipien der Disability Studies.

1. Introduction and problem definition

1.1. the need for knowledge about disability and diversity.

The experience of disrespect, lack of sensitivity and devaluation can lead people with disabilities to accumulate negative experiences with the health care system, to no longer seek professional medical care and finally (have to) rely on self-diagnosis and treatment. Doctors, on the other hand, often lack the expertise and skills to distinguish whether a need for treatment arises from the disability or from other diseases. A limited knowledge of the life situation of people with disabilities damages the quality of the doctor-patient relationship and the medical treatment. Often there are also communication problems with the affected persons, which prevent a comprehensive diagnosis and lead to delays in therapy. This is accompanied by insecure care on both sides, which ultimately leads to inequalities and exclusions in medical treatment [ 32 ]. It is therefore urgently necessary to incorporate knowledge from the Disability and Diversity Studies into medical education and training [ 7 ], [ 12 ].

Disability and Diversity Studies are research fields that deal with social inclusion and exclusion processes. The central question is which categories and dimensions of diversity currently lead to inequalities and disadvantages, which experiences persons self-experienced and which needs to make visible. On the one hand, this article focuses on explaining how the DDS work as scientific disciplines and what their basic professional orientations are. On the other hand, the arc is to be drawn to a diversity-oriented education and further training, which is transferable to different disciplines and professions, but focuses on medicine. It is therefore clear from the basic orientation of the DDS what contribution these avant-garde studies can make to diversity-sensitive medical education and further training and what elements should be included in medical studies in order to promote discussion of the topics of disability and diversity and to do justice to the patients concerned.

1.2. Development and basic orientation of Disability and Diversity Studies

Disability Studies as an interdisciplinary research field has its origins in the US and British disability movements of the 1980s. The aim of the disability movements was to move away from the medical model to the social model of disability. In contrast to the first, which used applied sciences to reduce the individual situation of people to their physical “illness” or “disability”, the social model focuses on social disadvantages and barriers. The disability movements wanted to show that the “defects” are less individually determined, but that people are at the same time “handicapped” by social constellations and defined as “disabled”. The criticism is directed at a purely medically justified deviation from a predefined norm and the resulting therapisation of the affected persons. From this critical point of view, disability is a social construction and as such should be included in scientific discussions. Furthermore, cultural contexts play a role, i. e. it is examined how disability is currently defined and has been interpreted in the course of history [ 21 ], [ 31 ].

Analogous to the basic ideas of Disability Studies, the DDS program generates ideas for replacing forms of care that found their place in separate institutions with self-selected models. The affected persons themselves define their need for support and actively request assistance. The former stigmatising logics of “diagnosis” and “treatment” are being removed and modified in inclusive community-based settings (deinstitutionalisation and community care approaches). The DDS thus follow the UN Convention on the Rights of Persons with Disabilities and other central human rights documents. In place of intervention orientation, which in many cases is still the determining factor in social work, there is a tendency for the self-involved to be controlled. According to Udo Sierck, there is still a lot to be done in this regard, since not only the forms of support and institutions need to be redesigned, but also the social thought patterns that have developed over the centuries, which – even today – deny the affected persons their subject status and force them into the role of victim [ 28 ]. By conceiving of diversity categories as socially produced, the allocation of opportunities and obstacles associated with these attributions can be rearranged and previously closed “inclusion windows” can be opened for as many citizens as possible.

The Diversity Studies go back to the US-American civil rights movement, in which minority groups fought for their rights. The aim was to recognise diversity in society and to counteract discrimination. Especially for diversity management the anti-discrimination legislation should be seen as a source and driver. Initially, the categories of ethnicity, gender and age were at the centre of civil rights movements and Diversity Studies. In recent decades there has been a conceptual differentiation of diversity dimensions (age, gender, sexual orientation, physical impairments/disabilities, social and cultural background, rural and urban areas, social status etc.). A wide variety of research disciplines are concerned with diversity, so that these Studies have become an integrated research program, in which many directions, such as the economic and social sciences, cultural studies and the human medicine, “cooperate”.

Diversity categories are not problematic per se, because they allow us to orient ourselves in the world and classify phenomena. That means that our knowledge about the world is acquired and internalized [...] and is available to us as stable everyday knowledge and action orientation [ 4 ]. Social knowledge is naturalized through language, everyday communication and institutionalized language regulations and appears to us as objectively given [ 4 ]. Categories of order function mostly binary and as social “ushers”, so that we structure inclusion and exclusion, belonging and non-belonging through them [ 4 ].

Diversity categories transport fixed ideas, for example about “the disabled”, “the young”, “the homosexuals”. This can promote the maintenance of an unquestioned norm that distinguishes itself from the “others” as well as the perpetuation of stereotypes and prejudices about groups [ 18 ]. According to Roswitha Hofmann, the current diversity categories mostly name minorities, while the majority that makes this difference remains unmarked. For example, the category “age” often only addresses “older” persons, but not “younger” ones, and the category “sexual orientation” is usually only associated with homosexuals and not with heterosexuals, although both of them have an “age” or have a “sexual orientation”. […] Categorizations also promote thinking in oppositions (“we” and the “others”) [ 18 ]. By suggesting the possibility of clear allocation and the homogeneity of groups, differences of and between people are blurred. Concentrating on one category while ignoring or neglecting other categories can lead to exclusions and “blindness” [ 8 ]. According to Verena Eickhoff and Lars Schmidt, too, an intersectional analysis of differences and inequality relations is therefore to be favoured and categories are to be thought of as interdependent [ 8 ] 1 .

The term “diversity” marks diversity on the one hand, but on the other hand it comes into contrast with the indeterminability of humans when fixed ideas are addressed with it. Roswitha Hofmann remarks that the term “diversity” is never conclusively determinable itself [ 18 ]. Jacques Derrida had also drawn attention to this by replacing the “e” with an “a”; in the term “difference”. The replacement remains inaudible [ 6 ]. The term “différance” aims to keep the work open to diversity and to break the logic of negating the heterogeneous [ 6 ], [ 9 ]. Any use of the term “diversity” must – if one follows Derrida today – be conscious of categorizing something about the other that cannot be named. Shortening uses of the term “diversity” are confronted with human rights and context-sensitive issues in the studies of DDS.

2. Project description: The DDS program and inspirations for medicine

In the following, the DDS program including its curricular structure will be presented in order to gain inspiration from its content and to derive competencies that could play a role in medical education and training. A multidisciplinary approach is becoming increasingly important in the health and social science degree programs at Carinthia University of Applied Sciences in order to be able to react to changing working cultures and living environments. The joint study of different courses of study also becomes more relevant, since the later work often takes place in heterogeneous teams 2 . This points to the urgent need to implement cross-curricular and cross-professional forms of teaching and learning, since a health problem usually has a social dimension, such as social isolation.

2.1. The DDS program

Social exclusion and marginalisation are changing due to changing working cultures, increased migration movements, activating social policy, neo-liberal economic practices, demographic change, etc, so that the required scientific and professionalism of DDS must always react to this change. The spectrum of tasks and fields of action of the DDS is becoming broader, above all due to the need to implement the UN Disability Rights Convention in all areas of society.

The DDS is a program that is based on the pulse of the present world, which – according to Gerhard Gamm – is no longer held together by any will [ 13 ]. In this “surreal world” there is no longer the one and correct reality, but its conflicting interpretations [ 13 ].

The DDS are in the middle of this ambivalence. On the one hand, they are seismographs of the present world and – to put it socio-philosophically – they capture their surrealities in thought [ 16 ] 3 . On the other hand, as a program at a university of applied sciences, they point beyond this analytical level and propose – with the participation of those concerned – suitable “solutions” for practical application. The focus is on assistance models that enable those affected to lead a self-determined and supported life according to their needs. Another field of action touched upon by the DDS is medical education and training and medical practice in general. When people interact, hierarchies and power structures are created, which cause inequalities and exclusions. In all contexts – also between doctors and patients – the successful handling of disability and diversity and the quality of the encounter with the other person always plays an excellent role.

The DDS program was established in 2012 and 2013 as a Bachelor's program at the Carinthia University of Applied Sciences in the field of Health and Social Sciences, because it was recognised that the topics of disability and diversity are forward-looking (see figure 1 (Fig. 1) ). As a part-time course of study, DDS enables students to combine work, leisure, family and other areas of life. During the semester (15 weeks) there are attendance times twice a month (fridays, saturdays and mondays) and one full week per semester (monday to saturday). The program comprises six semesters of 30 ECTS each. The job- and family-friendly attendance times are supplemented by elements of online teaching and self-study, in which self-, project and group work is carried out. The results of these elements flow into the attendance times by means of discursive processing.

The program is particularly attractive for self-affected students. Students with disabilities, a migration background, from educationally disadvantaged backgrounds and other experiences of social disadvantage or biographical crises (such as Burnout). Students can place their own experiences of exclusion at the centre of their academic debate and professional development. The DDS address the heterogeneous needs and interests of the study participants without changing university requirements. In the sense of an inclusive university, the framework conditions for studying are designed in such a way that the requirements can be met by as many people as possible: for example, a buddy system has been set up (students support each other in learning how to work scientifically) or it is possible to complete the course of study on a part-time basis.

The DDS program always adapts its scientific and professionalism to the changing processes of exclusion and marginalization that are, for example, being experienced in the world of work, due to changes in working cultures or migration movements. Firstly, the adaptation takes place through the further development of the curriculum, but this change is also registered and thematically integrated in the individual courses. This inclusion is particularly in Module 1 “Disability and Diversity Studies” and Module 2 “Interdisciplinarity of DDS”. In these modules, students familiarize themselves with the scientific foundations of Disability Studies and Diversity Studies and deal with reference disciplines such as psychology, pedagogy, philosophy, sociology, medicine, law and economics. The teaching of theoretical principles is interlocked with practical examples to ensure a theory-practice transfer.

The spectrum of tasks and fields of action of DDS has become much broader in recent years. In Module 3 “Professional Development in the Fields of Action of DDS” this extends from the areas of education and work, art and culture, business and administration, through to management and entrepreneurship and above all the initiatives of the self-representation of those concerned. At the same time, developments in society as a whole are intermingled due to internationally binding ethical guidelines and interdependencies between social subsystems (social affairs, economy, medicine, justice, etc.) to complex fields of activity that increasingly require a multidisciplinary approach. This practical relevance is deepened in the two practical phases and accompanied by reflection events. Module 3 supports the students in reflecting on their professional actions to the extent that they themselves contribute to reproducing categories that include and exclude others. The “Competence Workshop-Course” is hereby starting in the first semester.

Social professions are not free to perpetuate marginalising attributions to others, for example by making them more vulnerable to the influence of others. Special offers for specific target groups (delinquents, drug addicts, mentally ill people, etc.) and separate them into different help lines depending on the problem [ 2 ], [ 4 ]. These ascriptions and the intersectionality of diversity categories have not been sufficiently taken into account so far – even by social professions. The DDS, as a social science program, explores the effectiveness of categories and underexposed power mechanisms that restrict people in their open vitality and diversity. According to Derrida, the term deconstruction stands for the attempt to question the unambiguous classification [ 6 ], [ 9 ]. This confrontation with one's own respectful or disrespectful attitude towards another person takes place in Module 3, but also in Modules 4 and 5, in which scientific work and participatory, stakeholder-controlled research methodology form the core.

In Module 4 “Communicative and Conceptional Action” students become familiar with the multi-professional and multi-disciplinary orientation of DDS and gain an overview of models of conversation, communication and intervention. This module enables students to sensitively adapt models of assistance and support to the needs of individuals and groups and to apply them in a situation-specific manner, taking into account the respective social space.

Module 6 “Language Diversity” offers students a choice of three languages: sign language, Italian, Slovenian and reflects the geographical location of the course in the Alpe-Adria region. Module 7 “Independent Studies” enables the so-called independent study. Various events from the tertiary education sector can be attended depending on the students’ interests. In addition, this module offers a lecture series with high-ranking academics and representatives from practice every semester.

The DDS program participates in productive social change around the concepts of “disability” and “diversity”. Promising new approaches, such as supported employment, assisted living, community care, personal assistance, peer counseling, ex-in movement in the field of psychiatry, which must be helped to be implemented. To this end, reference is also made to international discourses and developments. Module 8a and 8b in particular, in which two electives are offered (Technology Assessment in the DDS, Care in the DDS), take this topicality into account by focusing on both new support settings (Care) and the comprehensive mechanization of society (digitalization). Here DDS cooperates with the medical technology program at Carinthia University of Applied Sciences (especially with the Active Assisted Living work area).

2.2. Possibilities and suggestions for curricular integration in the study of human medicine

In order to minimise the gaps in doctors' knowledge mentioned at the beginning, a universal demand for the teaching of a set of skills is to be made by answering the following three questions [ 19 ]:

• Why is it important to train doctors about the care of people with disabilities?
• Why is there still a lack of disability-related training in medical education?
• How can future medical training be improved?

To answer these questions or in order to create the necessary conditions in the study courses for this, it is necessary to impart six core competencies to the future physicians during their training [ 20 ]:

• Dealing with disabilities always in the context of human diversity throughout life and within the social and cultural environment.
• Qualification trainings for the evaluation of disabilities and functional consequences of health conditions, taking into account the effects on treatment and care processes
• Training in general principles of etiquette when dealing with people with disabilities.
• Familiarising with the role of other health professionals to ensure the development of integrated teams to care for people with disabilities.
• Understanding of the legal framework for the admission of disabled persons to health care facilities and the universal principles.
• Acquisition of competence in patient-centered care approaches, including understanding the perception of the quality of life of patients.

Of these core competencies, patient centeredness (patient centeredness or people-centered services) as well as inter-professional care are particularly noteworthy. Thus the Alliance for Disability in Health Care Education also demands “Nothing about us without us!”. This basic principle should apply to the training of all health care professions, including the design of medical curricula. The inclusion of people with disabilities in the development of teaching content as well as in the implementation of curricula for future physicians can help to ensure that students acquire the competence to provide patient-centred care for people with disabilities. To this end, the alliance has currently developed six fields of competence to be anchored in the curricula:

• Contextual and conceptual framework for disabilities
• Professionalism and patient-centered care
• Legal obligations and responsibilities for the care of patients with disabilities
• Teams and system-based practice
• Clinical evaluation
• Clinical care over the life span and during changes.

The fields of competence are each preceded by a justification and a learning outcome and the field itself is operationalised concretely and clearly in five to ten sub-items [ 1 ].

3. Disability and diversity in the context of human medicine programs [results and perspectives]

The fields of competence make it clear how relevant the topics of disability and diversity are for all professions that work directly with people. This is especially true for medicine, as it deeply touches the physical and psychological integrity of a person.

At the medical faculties, only individual parts of this complex catalogue of requirements have been implemented or are in the curricula accordingly. For about five years, however, a growing number of publications have been appearing that present individual aspects of disability and diversity from the perspective of medical teaching. Sarmiento et al. describe a longitudinal anchoring of the field of diability in the first two years of medical studies. The overall aim was to develop a curriculum that teaches medical students about disability in a way that is based on the concerns, perspectives and experiences of people with disabilities [ 27 ]. One publication addresses both topics by describing the teaching of aspects of disability in a culturally sensitive competence context. The acquisition of competence should take place in a “culture of disability” in the areas of communication, patient and family ideas about health care. Folkloristic or non-traditional forms of treatment are also considered [ 26 ].

In summary, it should be noted that in the curricula of medical courses of study in the German-speaking countries, considerations on anchoring disability and diversity, although by no means general or even uniform, are now being implemented or are at least being implemented in a whole series of approaches [ 17 ], [ 24 ]. Until a few years ago, this was done only marginally in the form of courses in conversation management, medical sociology and of social medicine and public health. In addition to the consideration of individual aspects of disability and diversity in individual learning subjects, there are also far-reaching developments in medical curricula, in which aspects relating to gender and cultural diversity or disability have been incorporated separately [ 24 ], [ 25 ]. With regard to the above-mentioned demand for comprehensive competence profiles that include both diversity and disability in equal measure, and which are always conceived in a patient-centred way in the respective training courses of all health care professions, across all occupational groups and always under the premise “nothing about us without us”, far-reaching development work is still required. This should also be flanked by corresponding research, including ensuring that it is supported financially and with human resources.

1 The DDS programme follows the more recent debates in Diversity Studies and thus points beyond the model of Lee Gardenswartz and Anita Rowe (1994).

2 A project is planned in which, for example Students of physiotherapy, health and nursing, DDS and social work study together and go through practical phases.

3 Georg Wilhelm Friedrich Hegel writes in his Grundlinien der Philosophie des Rechts (from the years 1832-1845): That which is to be understood is the task of philosophy, for that which is is reason. […] Here is the rose, here dances (Hegel 1986, p. 26).

Competing interests

The authors declare that they have no competing interests.

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Disability studies and the inclusive classroom: Critical practices for embracing diversity (2nd Ed.), 2017

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Home › Disability Studies › Disability Studies

Disability Studies

By NASRULLAH MAMBROL on December 15, 2018 • ( 2 )

Like feminist, critical race, and queer approaches to literature and culture, disability studies relates to a specific group: in this case, disabled people, who make up approximately 15 percent of the world population and are among the most poor and disempowered groups globally. Disability studies began to emerge in the West in the late twentieth century as a result of the success of the disability rights movement, the seminal work of a few scholars like Erving Goffman and Michel Foucault , and the flourishing of other interdisciplinary identity‐based approaches that revealed compelling new aspects of the humanities while emphasizing rights.

Starting in the late 1960s, disabled activists in the United States and the United Kingdom began to argue they were a group and denied basic rights. They consciously built on the civil rights movement. With protests, sit‐ins, marches, and demonstrations, people with a variety of impairments actively contested traditional negative perceptions of them as pitiable individuals with tragic medical problems. Instead, they presented themselves as a unified group facing widespread discrimination. (Previously, various kinds of disabled people, like blind citizens and disabled veterans, usually advocated separately for their own interests.) For example, in 1977 about 150 people with a range of impairments took over a floor of a federal building in San Francisco for 26 days to protest the government’s failure to implement Section  504 of the 1973 Rehabilitation Act, which was America’s first disability civil rights law. News organizations publicized the sit‐in and other groups offered their support. According to one organizer, a “high point” came when civil rights icon Julian Bond visited (Cone 1997). Throughout, the activists made themselves collectively visible to the public, revealing what had previously been largely hidden. Leader Ed Roberts called disabled people “one of the largest minority groups in the nation,” emphasizing their new feeling of a shared identity (Nielsen 2012: 168). Such activism not only contributed to a string of legislative victories that banned discrimination and improved access and inclusion (including the landmark Americans with Disabilities Act of 1990), but also gave disabled people a sense of pride and community. By expressing a collective voice and turning attention away from the medicalization of individual bodies to the organization of society, such activism also led to the emergence of disability studies.

A final factor that shaped the emergence of the field was the rise of other identity‐based, rights‐influenced approaches, especially critical race, feminist, and queer theory, which yielded significant new insights in the humanities. These endeavors gave disability studies scholars models and parallels to use and helped the field to mature quickly. They occasionally applied to disability feminist debates about essentialism versus social constructivism, postcolonial and critical race scholars’ analysis of hybrid identities, Eve Kosofsky Sedgwick’s notion of how a dominant group often depends on a subordinated group for its status, Donna Haraway ’s concept of the cyborg , extending the field’s insights, relevance, and legitimacy. Meanwhile, a disability lens often gave back by usefully revising or correcting previously accepted concepts.

Such intersectional approaches helped disability studies to emerge as a consequential, exciting intellectual pursuit with an activist orientation. To be sure, the field has had fractures, debates, and problems, but such controversies often add to its richness. Disability studies has given disabled people a voice in the academy that they previously did not have and enhanced our understanding not only of the humanities but also of social justice.

Disability as an Identity

Perhaps the most distinguishing, even radical, feature of disability studies is that it has approached disability primarily as a social and political phenomenon. To people accustomed to thinking of disability as a medical problem located in an individual’s body (the overwhelmingly dominant view of disability since the nineteenth century), such an approach may come as a surprise. However, as scholars in disability studies have pointed out, the “medical model” imbues disability with negative meaning by stigmatizing disabled people as damaged, inferior, and in need of rehabilitation or a cure. While medicine has helped disabled people, the medical model misses the whole picture. Instead, they argued that disability is produced as much by cultural and environmental factors as by bodily conditions, and have focused mainly on the former. Pioneering scholars in the field embraced a “social model” that directs attention away from the body to how society treats disabled people. Such a strategy has parallels in other rights‐based identity fields. For example, in 1952 feminist Simone de Beauvoir famously wrote that “one is not born, but rather becomes, a woman,” that is, that culture and not biology determines what it means to be a woman (Beauvoir 1952: 247). To advocate for themselves, disempowered groups have repeatedly steered attention away from material bodies to unjust ways that society treats them. Still, the relationship between biology and culture, between essentialism and cultural constructivism, has some unique complications in the case of disability and has been an area of debate.

In her 1998 manifesto for the field, Claiming Disability , Simi Linton summed up the most important benefits of using the social model. First, it allowed disabled people to find a group identity, despite many differences among them. What do people as disparate as visually impaired people, those with cognitive disabilities, and those who use wheelchairs have in common? By “refusing the medicalization of disability,” Linton wrote, disability activism and later disability studies emphasized how disabled people are connected, not by personal symptoms, but by “social and political circumstances that have forged us as a group” (Linton 1998: 2, 4). The social model not only made a collective identity possible, joining together people with a wide range of bodily conditions, but also presented disabled citizens as holders of rights. Linton reminded readers that the social model created the broad alliance that helped disabled people to achieve important legislative victories that changed for better access, inclusion, and protections from discrimination. Finally, she pointed out that while the medical model typically consigned disabled people to the care of health professionals and other specialists, the social model turned attention outward, making disability a fruitful topic of inquiry for a range of academic disciplines that in the past have had little to say about the subject.

While the social model has served as a core principle of the field, as disability studies matured, leading theorists have called for a more nuanced approach. In 2002 Lennard J.  Davis argued that an insistence on social construction alone was intellectually unsatisfactory. Tom Shakespeare, while saying the social model was crucial, called for more sophisticated methods that recognize disability as a phenomenon “requiring different levels of analysis and intervention, ranging from the medical to the socio‐political” (Shakespeare 2006: 204). Similarly, Sharon Snyder and David Mitchell (2006) advocated for a “cultural model” of disability that explores disabled people’s bodies interacting with the societies around them, while Tobin Siebers, with his theory of complex embodiment, positioned disability as a product of both the environment and bodily factors as “chronic pain, secondary health effects, and aging” (Siebers 2008: 25). Although in practice scholars in disability studies still mostly emphasized the cultural aspects of disability, the field and policymakers largely embraced an understanding that encompasses both biology and culture.

Tellingly, major disability civil rights laws and initiatives used this distinction. The Americans’ Disabilities Act of 1990 (ADA), for instance, defines disability not just as “a physical or mental impairment that substantially limits one or more major life activities” or “a record of such impairment,” but also as “being regarded as having such an impairment.” The last part of the definition acknowledges the importance of social attitudes and perspectives in forming disability. Even more explicitly, the United Nations Convention on the Rights of Persons with Disabilities (ratified in 2008) says that “disability results from the interaction between persons with impairments and attitudinal and environmental barriers that hinders their full and effective participation in society on an equal basis with others.” Such examples show that the conception of disability as the product of both the social environment and the body has gained traction on a national and global level.

Along the way, activists and scholars have contended with other challenges to creating a united disability identity. Because the stigma surrounding disability is still quite pervasive (cultures everywhere still often equate disability with being broken or disqualified), some people who are legally considered disabled have been uncomfortable with accepting the disability label. For example, some culturally Deaf people who use sign language see themselves as members of a proud linguistic minority and not in any way disabled (other Deaf signers, acknowledging the obstacles they typically face in a hearing society, consider themselves both). Similarly, some little people in the dwarf community have resisted being called disabled, while those who have recently become disabled are often uneasy with the affiliation.

A second barrier to a unified identity is that sometimes an unfortunate hierarchy has been evident in both the disability community and in disability studies, where white disabled people get more attention than ethnic minorities with disabilities and where wheelchair users receive more consideration than those with cognitive disabilities. As we will see, the field has made some progress in these areas, but more work remains to be done. A final challenge to achieving a cohesive disability identity relates to its instability as a category. The borders of disability can be ambiguous, especially when it comes to conditions that are temporary, invisible, or treatable with medication (Davidson 2016: 434). Furthermore, as Irving Zola pointed out, disability is a nearly universal experience (Shakespeare 2006: 204), because unless we die suddenly we will be disabled at some point in our lives. Indeed, the disability movement sometimes humorously uses “TAB” (for “temporarily able‐bodied”) to describe non‐disabled people. Disability studies thus reminds us that everyone has a stake in how disabled people are treated.

The potential universality of disability has sometimes divided scholars. Since disability crosses every identity formation, Lennard J. Davis (2002) provocatively argued that disability serves as a sort of master identity that links all other identity categories like gender, race, class, and sexuality (which are themselves unstable). Others have resisted such a formulation. Linton (1998) insisted that “I am not willing or interested in erasing the line between disabled and nondisabled people, as long as disabled people are devalued and discriminated against, and as long as naming the category serves to call attention to that treatment” (1998: 13). While acknowledging the instability of disability, Siebers agreed, arguing that a clearly defined disability community and minority identity are necessary for political gains.

These matters showed up in disability scholars’ literary and cultural analysis. While in the 1980s disability studies was dominated by social science approaches, in the 1990s literary and cultural criticism took on a prominent and leading role. Literary scholars made the field more visible and invigorated thinking not only about identity and aesthetics, but also about social attitudes toward disability, ethics, and human rights (Hall 2016: 53). In the process, they revealed that disability is a central, illuminating critical category.

Early Literary Disability Studies and Normalcy

When literary scholars turned their attention to disability, they discovered it, like gender and race, all around them (Garland‐Thomson 2013: 916). With no acknowledged corpus of disability literature, they began mostly to explore the numerous ways that disability operates in canonical works and in culture, often in their scholarship deftly moving between the two. One of the first topics they took on was not disability per se but its seeming opposite, normalcy, which they revealed often to be socially formed and to have enormous influence.

In Enforcing Normalcy (1995), Lennard J. Davis put normalcy on the table for critical investigation, much as scholars in critical race studies had begun studying whiteness, a previously invisible, unremarked concept. Although normalcy might seem something constant and neutral, Davis showed that the word norm with its present meaning arose only in the mid‐nineteenth century with the Industrial Revolution and the advent of statistics (before then, he maintained, the concept of the ideal was paramount). He went on to connect the ideology of normalcy with notions of progress and with eugenics, the late‐nineteenth/early‐twentieth‐century movement that attempted to decrease the number of “unfit” people (including the “feebleminded,” those with congenital disabilities, certain ethnic minorities, and even impoverished groups) in the population. To help advance Darwinian principles of natural selection, eugenicists targeted disempowered groups. Only with the rise of Nazi concentration camps during World War II did eugenics become discredited, although normalcy continues to have powerful sway. Davis suggested that nineteenth‐century novels often reinforce this idea of the norm by featuring protagonists who are ordinary, non‐heroic citizens, while disabled characters, like Hippolyte in Flaubert’s Madame Bovary (1857) or Tiny Tim in Dickens’s A Christmas Carol (1843), typically have marginal roles. In this way, the very structure of the nineteenth‐century novel upholds normalcy. He developed this point further in 2002, arguing that a binary distinction between normal and abnormal underpins the rise of the novel.

Other scholars in literary disability studies further developed these ideas about the formation of the norm. Drawing on Erving Goffman ’s insights, in Extraordinary Bodies (1997) Rosemarie Garland‐Thomson coined the term “normate” to describe an idealized position that has dominance and authority in society (Garland‐Thomson 1997: 8). The normate is formed through contact with unconventional bodies of all types. For instance, people with severe congenital disabilities have served as “icons upon whom people discharge their anxieties, convictions, and fantasies” and reify their own sense of ordinariness (1997: 56). In one chapter, Garland‐Thomson, building on sociologist Robert Bogdan ’s 1988 analysis of freak shows, demonstrated how they aided the development of normate‐ based thinking. Between 1835 and 1940, such shows were especially popular in Europe and the United States. They displayed exceptional bodies to the public for profit. Exhibited figures included Saartjie Baartman , the so‐called Hottentot Venus with the large breasts and buttocks typical of her African tribe, brought from South Africa to England and France in the early 1810s, and the microcephalic black man of P. T. Barnum’s “What Is It?” exhibit displayed in the United States starting in 1860. Such shows helped spectators to confirm their own sense of normalcy and normate‐based privilege.

Extending Davis’s and Garland‐Thomson’s ideas, David Mitchell and Sharon Snyder argued in Narrative Prosthesis (2000) that canonical authors frequently rely on disability as a narrative device both to give their fictions energy and ultimately to reaffirm normalcy in their works. They outlined several stages of this process. First, in such literature disability calls for an explanation, inaugurating the narrative act: “the unknowability” of disability “consolidates the need to tell a story about it,” they observed (Mitchell and Snyder 2000: 6). Next, narratives offer an account of the causes and consequences of the disability; they bring the disability from the margin into the center of the story; and finally, they cure, rehabilitate, or eliminate the deviance in some way, restoring a sense of order. Calling their theory “narrative prosthesis” because such narratives employ disability as a sort of crutch, they showed how it functions in works as disparate as Melville’s Moby‐Dick (1851) and Dunn’s Geek Love (1989). Like Lennard J. Davis, Mitchell and Snyder contended that narratives often buttress the norm. These foundational works in literary disability studies argued that literature and culture in the West often upheld normalcy and consigned disabled people to the margins, a dynamic that had real‐world consequences for disabled people.

Subsequently, some disability studies critics extended normalcy more explicitly to ability and able‐bodiedness. Drawing on queer theory and Adrienne Rich’s notion of “compulsory heterosexuality,” in 2002 Robert McRuer identified a “compulsory able‐bodiedness,” where “being able‐bodied means being capable of the normal physical exertions required in a particular system of labor” (McRuer 2002: 91). He showed how both ableism (discrimination or prejudice against disabled people in favor of able‐bodied people) and heteronormativity support each other, pressuring people to behave in socially acceptable ways. Similarly, a few years later Tobin Siebers identified a powerful but largely invisible “ideology of ability” that permeates society, which he said is often a “baseline by which humanness is determined. The lesser the ability, the lesser the human being” (Siebers 2008: 10).

In another area, many critics have followed Garland‐Thomson by publishing multidisciplinary studies of freakery and its afterlives. For example, in her 2001 Sideshow U.S.A., Rachel Adams not only explored the historical freak show, but also its appearance in twentieth‐century film, photography, and literature by authors such as McCullers and Morrison. Benjamin Reiss investigated P. T. Barnum’s career and its relationship to national anxieties about race, gender, and the body, while Cynthia Wu considered the original Siamese twins, Chang and Eng, and their impact in American literature and culture. In a parallel vein, in The Ugly Laws , Susan Schweik investigated laws that sprang up against the “unsightly beggar” in the late nineteenth and early twentieth centuries, bringing together disability, race, gender, and poverty, and adding another layer to our understanding of the social enforcement of normalcy during this period (Schweik 2010: vii).

Taken together, such work in disability studies revealed that what people conceive as normal is not unchanging but varies with time and place. It also demonstrated how ableism overlaps with racism, sexism, and “other forms of human diminishment that position some humans on the edges of belonging” (Titchkosky 2015: 131). In these ways, a major contribution of disability studies has been to make the dominant ideology of normalcy visible.

Reading Disability

While one project of literary disability studies has revealed the formation and hegemony of normalcy, another has showed how both fiction and film, through disabled characters, disability metaphors, and even their underlying structure, use disability to address countless aspects of human thought and experience. They demonstrated that disability, which might initially seem marginal, is actually pervasive and does significant cultural work.

First, just as second‐wave feminist scholars explored representations of women in male‐ authored texts, or critical race and postcolonial specialists considered depictions of African Americans or colonized people in books written by American or European white writers, so critics in literary disability studies investigated disabled characters in canonical works by mostly non‐disabled authors. From Shakespeare’s limping Richard III to the blind inhabitants of Wells’s “The Country of the Blind” (1904), from the cognitively disabled Benjy Compson in Faulkner’s The Sound and the Fury (1929) to McCullers’s deaf John Singer in The Heart Is a Lonely Hunter (1940), from Achebe’s stuttering Okonkwo in Things Fall Apart (1958) to Sinha’s physically deformed narrator in Animal’s People (2007), disability shows up in every period and literary tradition. Rather than trying to diagnose characters with disabilities, scholars in literary disability studies investigate the almost bewildering number of functions that the representations of disability perform. In addition, they sometimes investigated how depictions relate to their historical moment, showing how authors create, perpetuate, or contest the attitudes of their time.

In Aesthetic Nervousness (2007), Ato Quayson summarized nine functions of disability representation in literature and narrative film. In his provisional typology, disability can reveal the morality of other characters, as Tiny Tim does in A Christmas Carol (1843); or it can overlap with racial, sexual, economic, or social otherness, as with Caliban in Shakespeare’s The Tempest. It can show the disjuncture between thematic and narrative trajectories, as in Sadhwa’s Cracking India (1991), where the disability of the child narrator seems more an analogy for the partition of India than a realistic feature of the narrative. It can represent moral deficit or evil, as in the case of Shakespeare’s Richard III (c.1592); or it can be part of a sudden epiphany, such as when Tom Robinson reveals his withered left arm during the trial in To Kill a Mockingbird (1960). It can signify ritual insight, as in the blind prophet Tiresias in Greek myth. It can offer ineluctable and enigmatic tragic insight, as when the orphan Rebeca eats dirt in García Marquez’s ͗ One Hundred Years of Solitude (1967). It can serve as hermeneutical impasse, as in Ondaatje’s The English Patient (1992), where the man’s acute burns ensures he remains unknown throughout the story. Or it can be normality, as in Nancy Mairs’s Waist High in the World (1997) and other memoirs and autobiographies by disabled people whose disability is simply part of life. Such a catalogue, which Quayson readily admitted is not complete, suggests the broad range of disability representation, from abject to comic to threatening to pedestrian. Meanings of disability are not constant, but vary from work to work, just as in reality they vary with bodily condition, time, and place. Probing representations of such characters has become a staple of literary disability studies, revealing hidden patterns and expanding the way canonical narratives are read.

In addition to disabled characters, scholars have called attention to the frequent metaphorical use of disability, which adds to the meanings of disability in texts. Early literary disability studies critics sometimes expressed misgivings about figurative uses of disability, pointing out how such tropes frequently are quick ways vividly to depict something bad, broken, or wrong, even if that thing is unrelated to disability itself. Reading with the material lives of disabled people in mind, scholars like Davis (1995) and Mitchell and Snyder (2000) noted how such discourse increases the negative cultural meanings and the stigma of having a disability. More recently, however, some critics have revised this view of disability metaphor. For example, in 2005 Michael Bérubé acknowledged the value of objecting to representations that simply invoke pity or horror, but wrote that rejecting disability tropes because they are not realistic seems “incompatible with the enterprise of professional literary study” (Bérubé 2005: 570). Instead, he argued for an approach that raises awareness of how many familiar metaphors and narrative devices are “grounded in the underrecognized and undertheorized facts of bodily difference” (2005: 570). Along the same lines, Amy Vidali (2010) argued against simply policing harmful metaphors, urging artists and scholars instead to find ways to work “critically, ethically, transgressively, and creatively at the edges of disability metaphor” (Vidali 2010: 51). Scholars in the field seemed to move to become more open to rich varieties of disability metaphor in narratives.

A third element of disability in literature is structural. Scholars have pointed out how disability can shape the very form of narratives. Lennard J. Davis (1995) and Mitchell and Snyder (2000) argued that authors sometimes organize narratives around normalcy. In addition, Davis (1995) equated the very act of reading, which is typically silent and visual, with deafness, arguing that writing and decoding texts is bound up in disability. Discussing The History of the Life and Adventures of Mr. Duncan Campbell (1720)—sometimes attributed to Defoe—and other examples, he explored how the rise of mass literacy and the advent of deaf education in eighteenth‐century Europe helped writing to serve as a meeting ground of sorts where deaf and hearing people could interact. More recently, in The Secret Life of Stories (2016), Bérubé connected intellectual disability with motive, temporality, and self‐ awareness in narratives from The Sound and the Fury to Coetzee’s Life & Times of Michael K (1983) to the Harry Potter series (1997–2007). True to his 2005 advice to the field, Bérubé bypassed the question of realism to consider how, even in works ostensibly not “about” disability, disability shows up and structures narratives. Disability is, as he put it at the outset, “ubiquitous,” and he argued that ubiquity deserves greater recognition and exploration (Bérubé 2016: 1). In these ways, scholars working in literary disability studies have called attention to how disability works in literature, complicating texts, expanding their relevance, and changing the way we understand both popular and canonical narratives.

Along with the emergence of disability studies came increased attention to writing by disabled people themselves. Critics have examined such texts as The World I Live In (1908), by Helen Keller, who was deaf and blind; My Left Foot (1954) by Christy Brown, who had cerebral palsy; and Face to Face (1957) by Ved Mehta, who is blind. In an effort to make out‐of‐print writing by deaf people more available, in the late 1990s Gallaudet University Press launched its “Gallaudet Classics in Deaf Studies” series, republishing work by such deaf authors as Laurent Clerc (1785–1869) and Laura Redden Searing (1840–1923). Such works offer glimpses into the past lives of disabled people and provide a valuable counterpoint to depictions by non‐disabled authors. However, such writing is in short supply, perhaps, as Leonard Cassuto surmises, because of the “wretched treatment of disabled people over history” and because those authors who did publish did not want the highly stigmatized label of “disabled” (Cassuto 2010: 219). In contrast to literary critics in feminist or critical race studies, those in disability studies thus have less opportunity to recapture past writers of their group.

Notably, some disability studies scholars have claimed certain canonical writers as disabled, even if the authors themselves did not view themselves in such terms during their lifetimes. Candidates here include Milton, who became blind, Alexander Pope, who had short stature and a spinal condition, Lord Byron, who was born with a deformed foot, Flannery O’Connor, who as adult contracted lupus and walked on crutches, Borges, who lost much of his sight, and many more. In 2002, Sharon Snyder called attention to how are such authors are typically seen as succeeding despite impairments. On the contrary, she argued that often disability is an integral part of their accomplishments: “Disability experiences led [them] to literary achievement, not as mere compensation for physical differences but as necessary re‐signification of their bodies in the social register of art” (Snyder 2002: 178). What is evidence of their bodies in their work? Again, disability studies opened fresh approaches to literary investigation.

As Alice Hall and others have pointed out, since 1990 there has been an outpouring of life writing by disabled authors. Perhaps because of new interest in disability, improved access, and/or easier paths to publication, a number of autobiographical works have appeared by writers across the disability spectrum including Nancy Mairs, Kenny Fries, Anne Finger, Georgina Kleege, and Stephen Kuusisto. Such work has given a direct written voice to disabled authors, who often testify to their journey from isolation to membership in a larger community. In Thomas Couser’s words: “autobiography warrants study not just as all too rare first‐person testimony about disabling conditions but also as potentially powerful counter discourse to the prevailing discourse of disability” (Couser 2002: 109). As in other identity‐based fields, life writing has an important place in disability studies because it gives individual real‐world perspectives from within the community.

Going Forward: Disability and Intersectionality

As the field of literary disability studies quickly matured, some scholars pointed out that it was an overwhelmingly white and Euro‐American enterprise that needed to focus more on non‐Western literature and on writing by people of color. In 2002, Ato Quayson called for more attention to disability in postcolonial texts, noting that both disability studies and postcolonial studies had similar interests in power relations and identity. In Aesthetic Nervousness a few years later, he put his advice into practice, examining disability in works by African authors such as Coetzee and Soyinka. Literary critics in disability studies increasingly turned their attention to disability representations from the Global South. They noted that cultural meanings of normalcy and disability might differ from the West and cautioned against simply exporting Western disability theories. They also remarked on the effects of widespread poverty. When Clare Barker published Postcolonial Fiction and Disability (2011), it marked one of the first book‐length interventions focused on physical, sensory, and cognitive difference in postcolonial literature, advancing the work in this area.

Similarly, critics called for more work on disability in African‐American literature. Christopher Bell followed a 2006 exhortative essay with an edited collection, Blackness and Disability (2012), which sought to bring disability studies and African‐American studies more forcefully together. That same year, the journal MELUS published a special issue on “Race, Ethnicity, Disability, and Literature,” and soon thereafter scholars such as Schweik and Ellen Samuels made race a prominent part of their monographs. Samuels, in Fantasies of Identification (2014), investigated how disadvantaged groups have subversively performed racial, gender, or disability passing to escape oppressive institutions such as slavery. For example, in a reading of William and Ellen Craft’s account of escaping slavery, Running a Thousand Miles for Freedom (1860), she noted not just Ellen Craft’s racial passing, but also her enacting masculinity and disability (she pretends to be deaf) to find liberty.

While much research remains to be done on disability in postcolonial and ethnic literature, such work shows the potential for new readings and knowledge. Samuels’s book is part of a pronounced trend in literary disability studies to bring disability together more forcefully with other established identity categories. While the field has always been interdisciplinary and cognizant of other identity‐based disciplines—for example, in using other identity theories, in advocating for rights, or in Garland‐Thomson’s effort to bring disability studies and feminism together back in 1997—recent works have shown a renewed commitment to exploring how disability intersects with other forms of identity. For example, Alison Kafer’s Feminist, Queer, Crip (2013) clearly announced in the title the intersections she would explore. For her part, in Animacies (2012) Mel Chen brings together biopolitics, race, sexuality, and disability. As the field moves forward, scholars seem especially interested in how gender, sexuality, race, and class overlap, and in how social construction and chosen identities intersect.

At the same time, some scholars in literary disability studies have chosen to study literary representations of specific kinds of disability. In the early years of the field, disability studies scholars were sometimes faulted for overlooking cognitive disability. Now, through books like Stuart Murray’s Representing Autism (2008), that gap has begun to be addressed. Similarly, critics have focused exclusively on deafness, blindness, and madness in literature, drawing out how those specific disabilities have been represented across time, and sometimes offering useful cultural history of their disabled group as well.

While literary disability studies has focused the most on narrative fiction and autobiography, scholars in the field have also addressed film, drama, and poetry. Disability shows up in films from Charlie Chaplin’s City Lights (1931) to Disney’s Finding Nemo (2003) to Gattaca (1997) and numerous other science fiction pictures; in plays like Medoff’s Children of a Lesser God ( 1979); and in poetry from Milton’s “On His Blindness” (1655) to Dickinson’s works to poems by contemporary poets with disabilities like Lynn Manning, John Lee Clark, and Petra Kuppers. Anthologies such as Beauty is a Verb (2011) have brought contemporary disability poetry to a wider reading public. Disability is indeed ubiquitous in literature and film. An exciting aspect of literary disability studies is how it opens new opportunities for scholarship, knowledge‐building, and the advancement of human rights.

Source: A Companion to Literary Theory Blackwell Companions to Literature and Culture Edited by David H. Richter 2018 References Adams, Rachel. 2001. Sideshow U.S.A.: Freaks and the American Cultural Imagination. Chicago: The University of Chicago Press. Barker, Clare. 2011. Postcolonial Fiction and Disability: Exceptional Children, Metaphor, and Materiality. Basingstoke: Palgrave Macmillan. Bartlett, Jennifer, Sheila Black, and Michael Northern (eds.). 2011. Beauty is a Verb: The New Poetry of Disability. El Paso, TX: Cinco Puntos Press. Beauvoir, Simone de. 1989, c1952. The Second Sex. New York: Vintage. Bell, Christopher. 2011. Blackness and Disability: Critical Examinations and Cultural Interventions. East Lansing: Michigan State University Press. Bérubé, Michael. 2005. “Disability and Narrative.” PMLA 120 (2): 568–76. Bérubé, Michael. 2016. The Secret Life of Stories: From Don Quixote to Harry Potter, How Understanding Intellectual Disability Transforms the Way We Read. New York: New York University Press. Bogdan, Robert. 1988. Freak Show: Presenting Human Oddities for Amusement and Profit. Chicago: The University of Chicago Press. Cassuto, Leonard. 2010. “Disability Studies 2.0.” American Literary History 22 (1): 218–31. Chen, Mel. Animacies: Biopolitics, Racial Mattering, and Queer Affect. Durham, NC: Duke University Press. Couser, G. Thomas. 2002. “Signifying Bodies: Life Writing and Disability Studies.” In Disability Studies: Enabling the Humanities, ed. Sharon L. Snyder, Brenda Jo Brueggemann, and Rosemarie Garland‐Thomson, 109–17. New York: The Modern Language Association. Davidson, Michael. 2016. “Cripping Consensus: Disability Studies at the Intersection.” American Literary History 28 (2): 433–53. Davis, Lennard J. 1995. Enforcing Normalcy: Deafness, Disability, and the Body. London: Verso. Davis, Lennard J. 2002. Bending over Backwards: Disability, Dismodernism & Other Difficult Positions. New York: New York University Press. Fiedler, Leslie. 1978. Freaks: Myths and Images of the Secret Self. New York: Simon & Schuster. Foucault, Michel. 1978, c.1976. The History of Sexuality, Vol. 1, trans. Robert Hurley. New York: Vintage. Garland‐Thomson, Rosemarie. 1997. Extraordinary Bodies: Figuring Physical Disability in American Culture and Literature. New York: Columbia University Press. Garland‐Thomson, Rosemarie. 2013. “Disability Studies: A Field Emerged.” American Quarterly 65 (4): 915–26. Goffman, Erving. 1963. Stigma: Notes on the Management of Spoiled Identity. New York: Simon and Schuster. Hall, Alice. 2016. Literature and Disability. London: Routledge. Kafer, Alison. 2013. Feminist, Queer, Crip. Bloomington: Indiana University Press. Linton, Simi. 1998. Claiming Disability: Knowledge and Identity. New York: New York University Press. McRuer, Robert. 2002. “Compulsory Able‐ Bodiedness and the Queer/Disabled Existence.” In Disability Studies: Enabling the Humanities, ed. Sharon L. Snyder, Brenda Jo Brueggemann, and Rosemarie Garland‐Thomson, 88–99. New York: The Modern Language Association. Mitchell, David, and Sharon Snyder. 2006. Cultural Locations of Disability. Chicago: University of Chicago Press. Mitchell, David, and Sharon Snyder. 2000. Narrative Prosthesis: Disability and the Dependencies of Discourse. Ann Arbor: University of Michigan Press. Murray, Stuart. 2008. Representing Autism: Culture, Narrative, and Fascination. Liverpool: Liverpool University Press. Nielsen, Kim. 2012. A Disability History of the United States. Boston: Beacon Press. Quayson, Ato. 2002. “Looking Awry: Tropes of Disability in Postcolonial Writing.” Relocating Postcolonialism, ed. David Theo Goldberg and Ato Quayson, 217–30. Oxford: Blackwell Publishers. Quayson, Ato. 2007. Aesthetic Nervousness: Disability and the Crisis of Representation. New York: Columbia University Press. Reiss, Benjamin. 2001. The Showman and the Slave: Race, Death, and Memory in Barnum’s America. Cambridge. MA: Harvard University Press. Samuels, Ellen. 2014. Fantasies of Identification: Disability, Gender, Race. New York: New York University Press. Schweik, Susan. 2010. The Ugly Laws: Disability in Public. New York: New York University Press. Shakespeare, Tom. 2006. “The Social Model of Disability.” In The Disability Studies Reader, ed. Lennard J. Davis, 197–204. New York: Routledge. Siebers, Tobin. 2008. Disability Theory. Ann Arbor: University of Michigan Press. Snyder, Sharon. 2002. “Infinities of Forms: Disability Figures and Artistic Traditions.” In Disability Studies: Enabling the Humanities, ed. Sharon L. Snyder, Brenda Jo Brueggemann, and Rosemarie Garland‐Thomson, 173–96. New York: The Modern Language Association. Titchkosky, Tanya. 2015. “Normal.” Keywords for Disability Studies, ed. Rachel Adams, Benjamin Reiss, and David Serlin, 130–2. New York: New York University Press. Vidali, Amy. 2010. “Seeing What We Know: Disability and Theories of Metaphor.” Journal of Literary and Cultural Disability Studies 4 (1): 33–54. Wu, Cynthia. 2012. Chang and Eng Reconnected: The Original Siamese Twins in American Culture. Philadelphia: Temple University Press.

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Nice and informative article, it helps me to get an idea about litrary disability studies.

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Disability Studies by Scotch and Shapiro Essay

Disability policy: an eclectic overview.

The author of the article is Richard K. Scotch, a professor of sociology, public policy, and political economy. He is the author of numerous studies in the fields of disability rights, healthcare access, social inequality, and program evaluation.

The article notes that people with disabilities have become a recognized social force and group, but their economic and social position remains at the same level. The disability policy framework in the United States supports the social and economic marginalization of persons with disabilities (Scotch, 2000). The author conveys to the reader that the state policy towards persons with disabilities is based on generalizations. The author emphasizes that a change in approach to a problem can change the entire system for the better.

The author uses specific and actual examples of policies and also refers to the work of other authors who have considered this problem. The article offers a new understanding that spending the majority of the money on improvement programs that relieve the burden of physical disabilities is less effective than spending it on correction programs that increase the productivity of people with disabilities or change the environment in which they function.

People with Disabilities Forging a New Civil Rights Movement

Article author Joseph P. Shapiro is an award-winning journalist who has received the DuPont Award, the George Foster Peabody Award, the Robert F. Kennedy Award, and the Edward R. Murrow Award for his research work. He is a social policy writer, White House correspondent, and congressional reporter.

In this article, the author examines the process of fighting for the rights of people with disabilities through specific examples. He considers stories of confrontation of people with disabilities with stigmatization, prejudice, and excessive restrictions (Shapiro, 1994). Physical disabilities are not obstacles to active social, political, or professional activity. In contrast to the medical model, independence in disability is measured not by how far a person can go after an illness but by how a disabled person controls his life.

The author gives real examples of the life and success of people with disabilities, arguing how exactly they managed to achieve this. The article offers a new understanding that comfortable access to all areas of activity, including education and work, is possible and is their right, for which they effectively and successfully fight. Adapting schools and workplaces for people with disabilities is not tricky, and most excuses are based on prejudice rather than actual problems.

Scotch, R. K. (2000). Disability policy: An eclectic overview. Journal of Disability Policy Studies , 11 (1), 6-11.

Shapiro, J. P. (1994). No pity: People with disabilities forging a new civil rights movement . Broadway Books.

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Disability Studies Quarterly ( DSQ ) is the journal of the Society for Disability Studies (SDS). It is a multidisciplinary and international journal of interest to social scientists, scholars in the humanities and arts, disability rights advocates, and others concerned with the issues of people with disabilities. It represents the full range of methods, epistemologies, perspectives, and content that the field of disability studies embraces. DSQ is committed to developing theoretical and practical knowledge about disability and to promoting the full and equal participation of persons with disabilities in society. (ISSN: 1041-5718; eISSN: 2159-8371)

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In 2 essay collections, writers with disabilities tell their own stories.

Ilana Masad

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More than 1 in 5 people living in the U.S. has a disability, making it the largest minority group in the country.

Despite the civil rights law that makes it illegal to discriminate against a person based on disability status — Americans with Disabilities Act passed in 1990 — only 40 percent of disabled adults in what the Brookings Institute calls "prime working age," that is 25-54, are employed. That percentage is almost doubled for non-disabled adults of the same age. But even beyond the workforce — which tends to be the prime category according to which we define useful citizenship in the U.S. — the fact is that people with disabilities (or who are disabled — the language is, for some, interchangeable, while others have strong rhetorical and political preferences), experience a whole host of societal stigmas that range from pity to disbelief to mockery to infantilization to fetishization to forced sterilization and more.

But disabled people have always existed, and in two recent essay anthologies, writers with disabilities prove that it is the reactions, attitudes, and systems of our society which are harmful, far more than anything their own bodies throw at them.

About Us: Essays from the Disability Series of the New York Times, edited by Peter Catapano and Rosemarie Garland-Thomson, collects around 60 essays from the column, which began in 2016, and divides them into eight self-explanatory sections: Justice, Belonging, Working, Navigating, Coping, Love, Family, and Joy. The title, which comes from the 1990s disability rights activist slogan "Nothing about us without us," explains the book's purpose: to give those with disabilities the platform and space to write about their own experiences rather than be written about.

While uniformly brief, the essays vary widely in terms of tone and topic. Some pieces examine particular historical horrors in which disability was equated with inhumanity, like the "The Nazis' First Victims Were the Disabled" by Kenny Fries (the title says it all) or "Where All Bodies Are Exquisite" by Riva Lehrer, in which Lehrer, who was born with spina bifida in 1958, "just as surgeons found a way to close the spina bifida lesion," visits the Mutter Museum in Philadelphia. There, she writes:

"I am confronted with a large case full of specimen jars. Each jar contains a late-term fetus, and all of the fetuses have the same disability: Their spinal column failed to fuse all the way around their spinal cord, leaving holes (called lesions) in their spine. [...] I stand in front of these tiny humans and try not to pass out. I have never seen what I looked like on the day I was born."

Later, she adds, "I could easily have ended up as a teaching specimen in a jar. But luck gave me a surgeon."

Other essays express the joys to be found in experiences unfamiliar to non-disabled people, such as the pair of essays by Molly McCully Brown and Susannah Nevison in which the two writers and friends describe the comfort and intimacy between them because of shared — if different — experiences; Brown writes at the end of her piece:

"We're talking about our bodies, and then not about our bodies, about her dog, and my classes, and the zip line we'd like to string between us [... a]nd then we're talking about our bodies again, that sense of being both separate and not separate from the skin we're in. And it hits me all at once that none of this is in translation, none of this is explaining. "

From the cover of Resistance and Hope: Essays by Disabled People, edited by Alice Wong Disability Visibility Project hide caption

From the cover of Resistance and Hope: Essays by Disabled People, edited by Alice Wong

While there's something of value in each of these essays, partially because they don't toe to a single party line but rather explore the nuances of various disabilities, there's an unfortunate dearth of writers with intellectual disabilities in this collection. I also noticed that certain sections focused more on people who've acquired a disability during their lifetime and thus went through a process of mourning, coming to terms with, or overcoming their new conditions. While it's true — and emphasized more than once — that many of us, as we age, will become disabled, the process of normalization must begin far earlier if we're to become a society that doesn't discriminate against or segregate people with disabilities.

One of the contributors to About Us, disability activist and writer Alice Wong, edited and published another anthology just last year, Resistance and Hope: Essays by Disabled People , through the Disability Visibility Project which publishes and supports disability media and is partnered with StoryCorps. The e-book, which is available in various accessible formats, features 17 physically and/or intellectually disabled writers considering the ways in which resistance and hope intersect. And they do — and must, many of these writers argue — intersect, for without a hope for a better future, there would be no point to such resistance. Attorney and disability justice activist Shain M. Neumeir writes:

"Those us who've chosen a life of advocacy and activism aren't hiding from the world in a bubble as the alt-right and many others accuse us of doing. Anything but. Instead, we've chosen to go back into the fires that forged us, again and again, to pull the rest of us out, and to eventually put the fires out altogether."

You don't go back into a burning building unless you hope to find someone inside that is still alive.

The anthology covers a range of topics: There are clear and necessary explainers — like disability justice advocate and organizer Lydia X. Z. Brown's "Rebel — Don't Be Palatable: Resisting Co-optation and Fighting for the World We Want" — about what disability justice means, how we work towards it, and where such movements must resist both the pressures of systemic attacks (such as the threatened cuts to coverage expanded by the Affordable Care Act) and internal gatekeeping and horizontal oppression (such as a community member being silenced due to an unpopular or uninformed opinion). There are essays that involve the work of teaching towards a better future, such as community lawyer Talila A. Lewis's "the birth of resistance: courageous dreams, powerful nobodies & revolutionary madness" which opens with a creative classroom writing prompt: "The year is 2050. There are no prisons. What does justice look like?" And there are, too, personal meditations on what resistance looks like for people who don't always have the mobility or ability to march in the streets or confront their lawmakers in person, as Ojibwe writer Mari Kurisato explains:

"My resistance comes from who I am as a Native and as an LGBTQIA woman. Instinctively, the first step is reaching out and making connections across social media and MMO [massively multiplayer online] games, the only places where my social anxiety lets me interact with people on any meaningful level."

The authors of these essays mostly have a clear activist bent, and are working, lauded, active people; they are gracious, vivid parts of society. Editor Alice Wong demonstrates her own commitments in the diversity of these writers' lived experiences: they are people of color and Native folk, they encompass the LGBTQIA+ spectrum, they come from different class backgrounds, and their disabilities range widely. They are also incredibly hopeful: Their commitment to disability justice comes despite many being multiply marginalized. Artist and poet Noemi Martinez, who is queer, chronically ill, and a first generation American, writes that "Not all communities are behind me and my varied identities, but I defend, fight, and work for the rights of the members of all my communities." It cannot be easy to fight for those who oppress parts of you, and yet this is part of Martinez's commitment.

While people with disabilities have long been subjected to serve as "inspirations" for the non-disabled, this anthology's purpose is not to succumb to this gaze, even though its authors' drive, creativity, and true commitment to justice and reform is apparent. Instead, these essays are meant to spur disabled and non-disabled people alike into action, to remind us that even if we can't see the end result, it is the fight for equality and better conditions for us all that is worth it. As activist and MFA student Aleksei Valentin writes:

"Inspiration doesn't come first. Even hope doesn't come first. Action comes first. As we act, as we speak, as we resist, we find our inspiration, our hope, that which helps us inspire others and keep moving forward, no matter the setbacks and no matter the defeats."

Ilana Masad is an Israeli American fiction writer, critic and founder/host of the podcast The Other Stories . Her debut novel, All My Mother's Lovers, is forthcoming from Dutton in 2020.

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Disability, Media, and Representations: Other Bodies

Jacob Johanssen and Diana Garrisi (Editors), Routledge, 2022, 196 pp., paperback, 1SBN: 9781032400556

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Ahmed, S. (2004). The Cultural Politics of Emotion. Edinburgh University Press.

Daston, L. (2014). Beyond Representation. In Coopmans, C., Vertesi, J., Lynch, M., & Woolgar, S. (Eds.), Representation in scientific practice revisited (pp. 319–322). The MIT Press.

Gibson, R. (2018). Same-sex marriage and social media: How online networks accelerated the marriage equality movement . Routledge.

Goodley, D. (2011). Disability studies: an interdisciplinary introduction. Sage publications.

Johanssen, J., & Garrisi, D (Eds.). (2022). Disability, media, and representations: Other bodies . Routledge.

Nasio, J.-D. (2004). The book of love and pain: Thinking at the limit with Freud and Lacan (D. Pettigrew & F. Raffoul, Trans,). State University of New York Press. (Original work published 1996)

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Titchkosky, T. (2016). To pee or not to pee. In Devlieger, P., Brown, S., & Miranda-Galarza, B. (Eds.), Rethinking disability: World perspectives in culture and society . Garant Publishers.

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How to ensure students with disabilities have an equal chance to succeed?

Second in a four-part series on non-apparent disabilities.

Nearly one in four Americans has a disability, according to the CDC . Many disabilities — such as chronic pain, learning disabilities, diabetes, and depression — are “non-apparent,” or not immediately obvious to others, presenting their own set of challenges.

So how can professors design their classes to give all students an equal chance to succeed?

The Law School’s Michael Ashley Stein — who has taught classes such as “Disability, Human Rights, and Development” at Harvard Law School and “Disability Law and Policy” at Harvard Kennedy School — finds it useful to draw connections across affinity groups.

“People of color might point out racism and women and others might point out sexism. To me, all those prejudices and civil- and human-rights-violating type actions are grouped under ableism,” said the visiting professor and co-founder and executive director at the Law School’s Project on Disability . “It’s important when teaching disability to create those linkages, and to create the kind of affinity and solidarity that reaches across groups.”

A tool favored by Andrew Clark , senior lecturer on music and director of choral activities at Harvard, is the Universal Design for Learning framework geared to different types of learners. It gives students options to demonstrate what they’ve learned.

“I have in the last 10 years been in many settings with students where they’ve talked openly about depression or anxiety, whereas 40 years ago, they would not have talked about it.” Arthur Kleinman

Clark began teaching “Music and Disability” in the Faculty of Arts and Sciences in 2016. He was inspired by his early years working at a music camp for individuals with disability and chronic illness and a desire to learn more about the intersection between music and disability studies. Students examine musicians or specific works with disability narratives and consider “how disability justice is enacted and embodied.”

“There’s a difference between accommodation and anticipation,” Clark said. “If we can design our classes — as well as extracurricular activities and student life — to anticipate every person rather than to accommodate everyone, that’s true inclusion. That’s making students feel empowered rather than accommodated.”

Nadine Gaab , associate professor at the Harvard Graduate School of Education, who has centered her work on non-apparent disabilities for more than 20 years, uses the messaging platform Slack to offer students multiple ways to communicate, incorporates scholars with disabilities in her syllabus, and has flexible participation and assignment submission policies.

This spring, Gaab is teaching “Children with Learning and Developmental Differences.” Students learn about the challenges faced by children with conditions such as dyslexia , dyscalculia, and dysgraphia, as well as the teachers, administrators, and medical teams working with them.

“We identify a number of different barriers that prevent us from delivering optimal care for children with invisible and visible disabilities,” Gaab said. “We then identify solutions in educational and community settings that could work in response to those challenges.”

Students apply what they’ve learned to real-world community spaces by identifying accessibility problems and proposing solutions — some of which have already been implemented, Gaab noted.

Mental health, particularly among students, is of interest to psychiatrist Arthur Kleinman . The Esther and Sidney Rabb Professor of Anthropology in the FAS, professor of medical anthropology in global health and social medicine, and professor of psychiatry at Harvard Medical School has been teaching for more than 40 years and has noticed marked changes in how students approach mental health issues.

“People are much more open about this,” said Kleinman, who noted that he used to discourage students from disclosing mental health issues because of stigma.

“I have in the last 10 years been in many settings with students where they’ve talked openly about depression or anxiety, whereas 40 years ago, they would not have talked about it. The responses they get today are also very different. They’re very supportive.”

While the professors say the stigma around non-apparent disabilities and mental health are lessening, they also agreed that more can be done to create more inclusive learning and research environments — at Harvard and beyond.

“It’s an extra cognitive load,” explained Gaab. “It’s extra-hard work to fit into a system that’s designed for the average learner. It’s really important to make sure that students recognize that in themselves, and faculty are aware, that it’s not that students are lazy or even ‘stupid.’ They’re really trying hard.”

• University Disability Resources serves as the central resource for disability-related information, procedures, and services for the Harvard community.
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Tech offers promise to help yet too often perpetuates ableism, say researchers. It doesn’t have to be this way.

Getting ahead of dyslexia

Harvard lab’s research suggests at-risk kids can be identified before they ever struggle in school

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Prof. Betsy Wheeler Awarded Faculty Excellence Award in Universal Design

Betsy Wheeler founded the University of Oregon Disability Studies Minor in 2017 and served as its director for six years. Now retired, Betsy taught courses on race and disability, inclusive theater, ENG 205: Fantasy, ENG 240: Introduction to Disability Studies, and ENG 386: Bodies in Comics.  She researches the presence of disabilities in public space as represented in literature, visual/verbal popular culture, history, and urban planning. Her book  HandiLand: The Crippest Place on Earth  (U Michigan Press, 2019) received the  Choice  award, and her research will next appear in the  Journal of Literary and Cultural Disability Studies . In 2018, Lane Independent Living Alliance presented her with the LILAC Award for her advocacy for disability communities.

Betsy’s nomination highlights her dedication, passion, and leadership related to accessibility, inclusion of disabled students, and inclusive teaching. Here is what one of her nominators had to say:

“Dr. Wheeler shows a consistent commitment to UDL practices in her classrooms and actively promotes UDL. This is especially true for the classes she teaches for the Disability Studies minor. In these classes, UDL is part of the lived experience and the curriculum. We learn not just what UDL is nor just what it feels like to experience a classroom environment with such dedication to UDL, but also why UDL is essential to an institution of higher learning. 

Betsy is one of the friendliest professors I have had the immense pleasure of meeting. As a disabled student at the University of Oregon, I felt alone. I didn’t know many other disabled students. It’s not like that in Betsy’s classrooms. First off, Betsy is and has been an invaluable resource for disabled students on this campus. She is familiar with both campus resources and community resources that could benefit disabled students. Second, I met some of my closest friends while sitting at a table in Betsy’s Intro to Disability Studies Class. Her class gave us the chance to talk about the lived experience of having a disability in college. A few of these friends became core members of AccessABILITY Student Union (The disability affinity group for the University of Oregon). Her classroom’s consistent use of UDL has not only created an equitable learning environment for University of Oregon students but it has also allowed students to build a community for themselves. Betsy’s commitment is that of a fierce advocate and I am honored to have been in her tutelage.”

We contacted Betsy to congratulate her and asked about her perspective on the use of Universal Design for Learning. Here is what she shared with us:

“It means a great deal to me to receive the Faculty Excellence in Universal Design Award. I’m happy such an award exists, because it draws attention to a crucial and often-neglected area of teaching. I’ve gained and implemented my knowledge of Universal Design in Learning gradually, following the “Plus One” principle I learned from Marla Wirrick at UO Online: each time you teach a class, add one more accessibility feature. Some of these features are technical, like adding headers to documents, turning the captions on, and assigning accessible pdfs from eBook chapters or UO Libraries Scan and Deliver instead of my old hand-scanned versions. Some UDL features are policies, like the banning of timed tests and a clear protocol for making up absences. Some features are interpersonal and communicative, like welcoming students warmly, writing clear and transparent assignments, and allowing students to complete classroom tasks on their own as an alternative to groupwork. I disclose my own disabilities, ask students for their patience and accommodation of them, and promise them the same consideration. My course content also constitutes a form of access, allowing students with disabilities to see themselves reflected in the curriculum and all students to learn how they can implement access. I use Universal Design features as teachable moments, showing students how the world at large should work.”

Please join us in congratulating Betsy for her exemplary use of Universal Design for Learning and the meaningful impact she continues to have here at UO and beyond.

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One of the earliest goals of disability studies was to expose the various methods by which some bodies are marked as different and deviant while others are marked as normal. Disability studies scholarship focused on medicalization, rehabilitation, segregation, institutionalization, sterilization, and genocide demonstrated how such practices were instrumental to ideas of normalization and deviance. More recently, however, disability scholarship and disability culture more broadly have turned away from forces of institutionalization or medicalization to explore the relationship between disability and the concept of “embodiment.” Embodiment is a way of thinking about bodily experience that is not engaged solely with recovering the historical mistreatment of disabled people. Rather, it includes pleasures, pain, suffering, sensorial and sensual engagements with the world, vulnerabilities, capabilities, and constraints as they arise within specific times and places.

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Prestigious cancer research institute has retracted 7 studies amid controversy over errors

Seven studies from researchers at the prestigious Dana-Farber Cancer Institute have been retracted over the last two months after a scientist blogger alleged that images used in them had been manipulated or duplicated.

The retractions are the latest development in a monthslong controversy around research at the Boston-based institute, which is a teaching affiliate of Harvard Medical School. 

The issue came to light after Sholto David, a microbiologist and volunteer science sleuth based in Wales, published a scathing post on his blog in January, alleging errors and manipulations of images across dozens of papers produced primarily by Dana-Farber researchers . The institute acknowledged errors and subsequently announced that it had requested six studies to be retracted and asked for corrections in 31 more papers. Dana-Farber also said, however, that a review process for errors had been underway before David’s post. 

Now, at least one more study has been retracted than Dana-Farber initially indicated, and David said he has discovered an additional 30 studies from authors affiliated with the institute that he believes contain errors or image manipulations and therefore deserve scrutiny.

The episode has imperiled the reputation of a major cancer research institute and raised questions about one high-profile researcher there, Kenneth Anderson, who is a senior author on six of the seven retracted studies. 

Anderson is a professor of medicine at Harvard Medical School and the director of the Jerome Lipper Multiple Myeloma Center at Dana-Farber. He did not respond to multiple emails or voicemails requesting comment. 

The retractions and new allegations add to a larger, ongoing debate in science about how to protect scientific integrity and reduce the incentives that could lead to misconduct or unintentional mistakes in research. 

The Dana-Farber Cancer Institute has moved relatively swiftly to seek retractions and corrections. 

“Dana-Farber is deeply committed to a culture of accountability and integrity, and as an academic research and clinical care organization we also prioritize transparency,” Dr. Barrett Rollins, the institute’s integrity research officer, said in a statement. “However, we are bound by federal regulations that apply to all academic medical centers funded by the National Institutes of Health among other federal agencies. Therefore, we cannot share details of internal review processes and will not comment on personnel issues.”

The retracted studies were originally published in two journals: One in the Journal of Immunology and six in Cancer Research. Six of the seven focused on multiple myeloma, a form of cancer that develops in plasma cells. Retraction notices indicate that Anderson agreed to the retractions of the papers he authored.

Elisabeth Bik, a microbiologist and longtime image sleuth, reviewed several of the papers’ retraction statements and scientific images for NBC News and said the errors were serious. 

“The ones I’m looking at all have duplicated elements in the photos, where the photo itself has been manipulated,” she said, adding that these elements were “signs of misconduct.” 

Dr.  John Chute, who directs the division of hematology and cellular therapy at Cedars-Sinai Medical Center and has contributed to studies about multiple myeloma, said the papers were produced by pioneers in the field, including Anderson. 

“These are people I admire and respect,” he said. “Those were all high-impact papers, meaning they’re highly read and highly cited. By definition, they have had a broad impact on the field.” 

Chute said he did not know the authors personally but had followed their work for a long time.

“Those investigators are some of the leading people in the field of myeloma research and they have paved the way in terms of understanding our biology of the disease,” he said. “The papers they publish lead to all kinds of additional work in that direction. People follow those leads and industry pays attention to that stuff and drug development follows.”

The retractions offer additional evidence for what some science sleuths have been saying for years: The more you look for errors or image manipulation, the more you might find, even at the top levels of science. 

Scientific images in papers are typically used to present evidence of an experiment’s results. Commonly, they show cells or mice; other types of images show key findings like western blots — a laboratory method that identifies proteins — or bands of separated DNA molecules in gels. 

Science sleuths sometimes examine these images for irregular patterns that could indicate errors, duplications or manipulations. Some artificial intelligence companies are training computers to spot these kinds of problems, as well. 

Duplicated images could be a sign of sloppy lab work or data practices. Manipulated images — in which a researcher has modified an image heavily with photo editing tools — could indicate that images have been exaggerated, enhanced or altered in an unethical way that could change how other scientists interpret a study’s findings or scientific meaning. 

Top scientists at big research institutions often run sprawling laboratories with lots of junior scientists. Critics of science research and publishing systems allege that a lack of opportunities for young scientists, limited oversight and pressure to publish splashy papers that can advance careers could incentivize misconduct. 

These critics, along with many science sleuths, allege that errors or sloppiness are too common , that research organizations and authors often ignore concerns when they’re identified, and that the path from complaint to correction is sluggish. 

“When you look at the amount of retractions and poor peer review in research today, the question is, what has happened to the quality standards we used to think existed in research?” said Nick Steneck, an emeritus professor at the University of Michigan and an expert on science integrity.

David told NBC News that he had shared some, but not all, of his concerns about additional image issues with Dana-Farber. He added that he had not identified any problems in four of the seven studies that have been retracted. 

“It’s good they’ve picked up stuff that wasn’t in the list,” he said. 

NBC News requested an updated tally of retractions and corrections, but Ellen Berlin, a spokeswoman for Dana-Farber, declined to provide a new list. She said that the numbers could shift and that the institute did not have control over the form, format or timing of corrections. 

“Any tally we give you today might be different tomorrow and will likely be different a week from now or a month from now,” Berlin said. “The point of sharing numbers with the public weeks ago was to make clear to the public that Dana-Farber had taken swift and decisive action with regard to the articles for which a Dana-Farber faculty member was primary author.” 

She added that Dana-Farber was encouraging journals to correct the scientific record as promptly as possible. 

Bik said it was unusual to see a highly regarded U.S. institution have multiple papers retracted. 

“I don’t think I’ve seen many of those,” she said. “In this case, there was a lot of public attention to it and it seems like they’re responding very quickly. It’s unusual, but how it should be.”

Evan Bush is a science reporter for NBC News. He can be reached at [email protected].

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Teaching Taiwan An Experiential Learning Essay

One of my favorite undergraduate courses to teach is Memory and the Politics of Heritage in Asia.

This class uses examinations of material objects (not only museums, monuments, and memorials, but also archives, school curriculum, and oral histories) to explore how history does not exist as a passive, fixed account, but is instead an active and ongoing struggle to shape narratives, preserve memory, and influence collective consciousness. In this class, we explore history as a living, contested terrain. However, it can be difficult for undergraduate students sitting within the four walls of my classroom, place-bound on my campus, to truly feel how competing narratives of history are actively being contested and fought over in real time as we study them. For this reason, when I had the opportunity in the summer of 2023 to take a group of undergraduate students to Taiwan on a faculty-led program to explore memory politics there in real-time, I immediately agreed. In my experience, there is nothing more powerful to understanding memory politics than taking students to the physical spaces where history has taken place and is actively being remembered, suppressed, and shifted.

Read Lauren's full Article here.

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2024 Midwest Slavic Association Student Essay Prize Competitions Now Open

The Midwest Slavic Association, with support from the Association for Slavic, East European, and Eurasian Studies (ASEEES), is now accepting submissions for its 2024 Student Essay Prize Competitions. Students can submit a paper on any topic related to Slavic, East European, and Eurasian studies to the Midwest Slavic Association for consideration. The best undergraduate paper will win a one-year membership to the Association for Slavic, East European, and Eurasian Studies (ASEEES), and the graduate winner will receive a one-year membership to ASEEES, as well as being considered then for the ASEEES Graduate Student Essay Prize at the national level. The graduate winner of the ASEEES Student Essay Prize at the national level wins travel, lodging, and registration for the Annual ASEEES Convention and membership for the following year. The prize is presented during the awards presentation at the Annual Convention. All submissions should be turned in by May 1, 2024 .

Undergraduate Papers

Undergraduate paper submissions can be in a variety of formats, including: conference paper, thesis, course paper, or article. They should be no longer than 20 double-spaced pages including notes and bibliography. Entries must be submitted electronically and written in English. 

Graduate Papers

Graduate essay submissions can be of several formats: expanded versions of conference papers, graduate level seminar papers, Master's thesis chapters, or dissertation chapters. The student should indicate what type of paper they are submitting and provide an abstract. Essays should have a minimum word count of 7,500 and a maximum word count of 14,000 (25 to 50 pages approximately) inclusive of footnotes and bibliography. Submissions must be written in English, double-spaced, and include footnotes or endnotes. 

Eligibility  

Students who wish to submit an essay should have participated in the Midwest Slavic Conference, or be from an institution in the Midwest (defined as any college or university in the states of  Illinois, Indiana, Iowa, Kentucky, Ohio, Michigan, Minnesota, and Wisconsin ). With your submission, please also include a short bio of the author, an abstract of the essay, and indicate the format of the essay. 

Email your submission to [email protected] , stating your name, institution at which you are enrolled, and in which competition you are participating (undergraduate/graduate), as well as a PDF of your paper with all information as outlined above.