Shape Stops Story

Subverting the Monster

Disability is a part of the human condition but it is also a contested field of various definitions and policies. Various approaches to understanding and treatment of disabilities are referred to as models of disability. The two main, opposing, approaches are social and medical models. In the medical model, disability is considered as a personal problem, caused by a trauma, an illness, or some other health condition, thus calling for a need for medical cure and care. In contrast with the medical model, which claims the necessity of curing the impairments, the social model views disability as a consequence of an unjust social order and insists on the correction of the society that disables a person. Social views on disability and disability activism mutually influenced each other and contributed to legislative changes. Disability models are embodied and reinforced in welfare policies. Contemporary disability scholarship tries to overcome the dichotomy between medical and social models and takes into account complex issues of body, pain, sexuality and reproduction, intimate experiences and emotions, gender, and age.

Physical disability is traditionally defined by society's view of atypical function. The medical model offers information on factors contributing to physical disability, including genetics, injury, and disease. The social model of disability, however, defines the societal responses, not the physical differences, as disabling. People with physical disabilities have unique characteristics and experiences that fall into the broad range of human diversity. They belong as full participants in society. Social workers must focus on working in respectful partnerships with people with physical disabilities to change environments and attitudes. This will help build a just society that honors diversity. This entry addresses multiple factors that cause disability, from genetics to environment, as viewed through the medical model. The social model view of “the problem” is offered in comparison. It also introduces the wide diversity of people with physical disability. The entry discusses two major societal responses to physical disability. Environmental modification is one approach. A more recent approach, Universal Access, involves upfront design of environments to meet diverse needs. The final sections explain implications for social workers and lays groundwork for action. Creating access and respectful partnerships are foundations of the work ahead. It is difficult to define physical disability without situating the discussion in the model used to view and deal with human diversity. This discussion is based on the social model of disability, a view of disability that sees the environment as disabling, not the individual condition. Discussion of the medical model is offered as a contrast. (For a more complete discussion of disability models, see Mackelprang's Disability: An Overview in this publication.)

In this review, I concentrate on analysing the response Tom Shakespeare’s Disability rights and wrongs has awoken in the disability studies community. I argue that the complicated relationship between politics...

<i>Literary Bioethics: Animality, Disability, and the Human</i> by Maren Tova Linett

The present chapter is a close ally of the previous chapter on the lost art of sadness, and though there may be overlapping issues, this chapter has a specific mission in narrating my own journey through grief, sadness and mild depression and a return to a vibrant, expansive and enriching emergence of a ‘new sense of self’ within me. The issues can easily be shared as there are both clients and therapist who have gone through a similar journey of loss, grief and an expansive sense of love and compassion. Also, going through a different dimension of a personal narrative, this chapter strengthens the claims of the last chapter.

This study examined the conceptualisation of disability in a teacher education textbook. Drawing on Norman Fairclough’s post-structurally informed approach to critical discourse analysis, I deconstructed the language used in a science teacher education textbook to portray disability, and examined relationships to broader socio-political contexts in pre-K-12 education and teacher education. The medical and social models of disability served as conceptual lenses for this analysis because they represent the principal paradigms in the fields of special education and disability studies in education respectively. The analysis showed the textbook’s conceptualisation of disability was imbued with the medical model, representing disability as a finite, knowable deficit that resides in individual learners, and portraying students with disabilities as needy and passive. The textbook’s medicalised conceptualisation of disability is further analysed in relationship to the hegemony of the medical model and the emancipatory ideology of the social model. Implications are discussed for teacher educators seeking to engage preservice teachers in sophisticated thinking about their legal and ethical professional responsibilities toward a more just and equitable education for learners with disabilities.

Disability in Indonesia and globally remains closely associated with systemic discrimination, as legal protections alone have not been sufficient to dismantle stigma rooted in ableism, isolation, and exclusion. Citizenship education, when integrated with disability studies, offers a constructive framework for promoting inclusivity and civic participation in line with the social model of disability, which challenges the medical and charity models that perpetuate marginalization. This study aims to analyse how disability studies can be integrated into non-formal citizenship education to strengthen civic engagement that empowers people with disabilities and reflects transformative citizenship and civic empowerment. This research used a qualitative descriptive method with purposive and snowball sampling. Data were collected through interviews and observations with people with disabilities and their families, philanthropic communities, election officials, disability service units in higher education, and experts in citizenship education, health, public policy, and Pancasila studies. The findings show that empowerment initiatives—such as philanthropic programs, service learning, and inclusive election practices—are present but remain fragmented, ceremonial, and constrained by weak inter-sectoral collaboration. Nonetheless, the integration of service learning and pentahelix collaboration strengthens civic competence, youth leadership, and inclusive participation in communities. This study concludes that Indonesia’s Pancasila citizenship model provides a strong normative foundation for embedding disability empowerment in citizenship education. Its contribution lies in expanding citizenship education theory through disability perspectives while offering practical strategies for cross-sectoral collaboration. The implication is the need for sustainable policies and civic practices to transform legal guarantees into inclusive social justice. Disabilitas di Indonesia maupun global masih terkait dengan diskriminasi sistemik, karena perlindungan hukum belum cukup untuk menghapus stigma yang berakar pada ableisme, isolasi, dan eksklusi. Pendidikan kewarganegaraan yang terintegrasi dengan kajian disabilitas menawarkan kerangka untuk memperkuat inklusivitas dan partisipasi kewargaan sesuai model sosial disabilitas, yang menolak model medis dan amal yang sering melanggengkan marginalisasi. Penelitian ini bertujuan menganalisis bagaimana kajian disabilitas dapat diintegrasikan ke dalam pendidikan kewarganegaraan non-formal untuk memperkuat keterlibatan kewargaan yang memberdayakan penyandang disabilitas serta merefleksikan kewargaan transformatif. Metode yang digunakan adalah kualitatif deskriptif dengan teknik purposive dan snowball sampling. Data diperoleh melalui wawancara dan observasi terhadap penyandang disabilitas dan keluarga, komunitas filantropi, penyelenggara pemilu, unit layanan disabilitas di perguruan tinggi, serta para ahli pendidikan kewarganegaraan, kesehatan, kebijakan publik, dan Pancasila. Hasil menunjukkan bahwa inisiatif pemberdayaan—seperti program filantropi, service learning, dan praktik pemilu inklusif—sudah ada, namun masih terfragmentasi, seremonial, dan terkendala lemahnya kolaborasi lintas sektor. Meski demikian, integrasi service learning dan kolaborasi pentahelix terbukti memperkuat kompetensi kewargaan, kepemimpinan pemuda, dan partisipasi inklusif di masyarakat. Kesimpulannya, model kewarganegaraan Pancasila memberi dasar normatif kuat untuk mengintegrasikan pemberdayaan disabilitas dalam pendidikan kewarganegaraan. Kontribusi penelitian ini adalah memperluas teori pendidikan kewarganegaraan melalui perspektif disabilitas serta menawarkan strategi praktis kolaborasi lintas sektor. Implikasinya, diperlukan kebijakan berkelanjutan dan praktik kewargaan kolaboratif untuk mewujudkan keadilan sosial yang inklusif.

‘What are we doing, when we do disability studies?’ Tom Shakespeare begins his edited collection Disability Research Today: International Perspectives by asking this question. In answering it, he notes that the chapters are framed within his intellectual biases and ‘preferences for what disability studies should be’ (p. 2). The book is organised into four parts: (i) illness and impairment; (ii) disabling processes; (iii) care and control, and; (iv) communication and representation. Disability, for Shakespeare, is a ‘complex, diverse and above all multi-factorial phenomenon’ that should mainly draw on ‘empirical research, rather than theory alone’ (p. 3). In keeping with his insistence on an empirical focus, most of the chapters do not explicitly espouse a bio-psycho-social model or focus on disability, as interpreted in terms of the World Health Organization's (WHO) international classification of functioning, disability and health (ICF) – except for Corbisiero's chapter. Most focus on disability as ‘social-relational’. Disability studies are inclusive enough to accommodate diversity but some activists and scholars in critical disability studies or using a social model approach find Shakespeare's seemingly blind espousal of the ICF and WHO problematic, and will be reading this book wondering if his work is still relevant to critical disability studies and sociology (although I think that this book illustrates he is trying to say something more nuanced). There are chapters where, empirically and theoretically, Shakespeare is on the mark in identifying important areas of research, for example, in terms of intersectionality to homelessness, aging or violence against disabled women in India. The qualitative and quantitative depth and quality of the research is to be commended and gives a nice overview of interesting scholarship. Shakespeare also fittingly recognises where some of the future research challenges of disability studies are located, in terms of technological advances and the importance of big data. When thinking of research evidence and links to policy and practice, the gold standard is the randomised controlled trial (RCT). RCTs are not discussed in this book but would fit well with Shakespeare's research interests in rehabilitation (where the ICF has been very influential) and might open a critical approach to rethinking its hegemony. I was particularly interested in Ishihara's chapter ‘Learning from Tojisha Kenkyu’ (p. 27), where psychiatric patients take the lead in developing treatment regimes. The chapter also is connected to the innovative ideas currently being developed in mad studies and neurodiverse debates (such as in McWade et al. 2015). In terms of the intersections between disability studies and the sociology of health and illness, Ferrie and Watson's chapter on ‘The psycho-social impact of impairments: the case of motor neuron disease’ (p. 43) will be of interest in that they develop a social relational model of disability. Although Shakespeare does not want to focus on the social model, this chapter is indebted to the theoretical work of Carol Thomas by building on her idea of psycho-emotional disablism, illustrating that theory is still fundamental but reified. This points to some of the dangers of thinking that you can create silos in certain disability models or theories in a discipline. In many of the chapters there is a sense that innovation, in terms of theoretical development, will happen only through interdisciplinary work. As such, the book feels a little out of touch with some of the current debates in sociology, anthropology and disability studies. In particular, it seems out of touch with the political urgency of disability activism, the questioning of neoliberalism, the impact of austerity, conflicts, rethinking our sociological futures and how particular paradigms of disability become linked into the politics of ‘who counts’ (Ginsburg and Rapp 2015). Most of these studies are also located in middle to high income countries. This edited collection neglects research and debates on decolonising disability in the global south and on rethinking ontological and epistemological foundations. Part of that movement of decolonisation is a questioning of the boundaries of inclusion set by disability elites or institutions based in the global north. The theoretical richness and crucial empirical work being done in Australia, Canada and the USA is also missing, for example, how sites of intervention and incarceration become interlinked to disability. I would not call this book truly international or representative of the variety of approaches in disability studies. However, it is a nice reference book in showcasing empirical disability research and how the field is growing methodologically in new and exciting directions. It should appeal to students, academics and practitioners in a range of fields such as sociology and social policy.

"I Love Every Part of You"

Background: The Medical Model of disability focuses on diagnosed conditions. It is used in policy particularly to categorise people. This enables predictions and forecasting about the size of policy needs but tends to homogenise disability representations, assigning a negative evaluation to illness that may be irrespective of patho-anatomical correlates. The Social Model considers disability as imposed by society through attitudes and barriers. The Neurodiversity Model is a type of social and cultural model with biological implications; it states that differences in brain and behaviour lie on a non-pathological spectrum. Critics say this whitewashes lived experience. Policymakers may devalue the Neurodiversity Model’s origins within activist neurodiverse communities. The model that policy and practice decision makers use has fundamental effects on their impacts. Aims and objectives: The Medical and Neurodiversity Models are reviewed in reference to their politicisation as ways to characterise disability, and identity politics. The implications socially and for disability policy and practice and evidence use are considered. Key conclusions: Both models fall short in addressing the needs of the broad community of the disabled, yet both have useful features. We propose the Biological Gradient Model (BGM), which integrates scientific theory while avoiding pathology-based concepts and value-laden judgments concerning ‘deficiency’. Its usefulness is demonstrated; it resolves some of the ambiguity and tensions that exist in the way people with disability are viewed by different groups and treated within policy. It has the potential to reduce issues of partial representation, where the voices of those who cannot self-advocate may be less heard.

There are competing models through which a dementia diagnosis can be understood, but what dominates the assessment process for dementia diagnosis is the medical model, which neglects the social, cultural, and political aspects of the diagnosis. In a Western society where value is ascribed to qualities associated with youth, such as good physical health, the rhetoric around older adults and dementia has long been dominated by stories of dependence and burden. Assuming them to be passive and unreliable, little research into the opinions of those diagnosed with dementia has been undertaken, but studies eliciting first-hand accounts suggest that the practice of diagnosis is inconsistent and often fails to meet the needs of the people receiving the diagnosis. Aiming to add depth to this research, four people aged over 65 with a dementia diagnosis were interviewed to evaluate the impact of socio-cultural discourse on their experience of being assessed for and living with a dementia diagnosis. Narrative analysis was then used, attending to the performative, descriptive, and contextual elements of the accounts. The study revealed the narrative abilities of people diagnosed with dementia and showed that hegemonic discourse on dementia alongside personal philosophies affect how the label is received and understood, and whether it is accepted or rejected. Participants also demonstrated value in interdependence, and a variety of post-diagnostic needs, reflecting the heterogeneity of those who receive the diagnosis. The implications of this study are then discussed, considering the impact that utilising the social model of disability could have on the treatment of people diagnosed with dementia.

If disability studies is a form of cultural studies, then the study of disability studies might be a form of cultural studies in itself. The still-brief but continuing, welcome, and successful rise of disability studies in the humanities is an unusual case study in the maturation of a field. Two of the books I will discuss here are written by widely acknowledged founders of disability studies in the humanities. Following their field-defining books of the 1990s, Lennard Davis and Rosemarie Garland-Thomson now return in this decade with field-steering works. Michael Davidson meanwhile navigates a similar course in a book that illustrates some of the specifically literary implications of the latest turn in disability studies. Disability studies pioneers originally aligned the emergent field with racial and ethnic studies. One such field pioneer, Simi Linton, declared in 1998 that more curricular attention needed to be paid to “the minority-group status of disabled people, and the cultural, social, and political meanings of that status” (148). Certainly there is a practical justification for constructing the field as identity-based, if for no other reason than that the unemployment rate among disabled people is shamefully high, and identitybased fields offer practical strategies for identifying oppression and ultimately creating employment opportunities. But disability is no typical minority group, and the development of disability studies as an identity-based field has not been typical either. For one thing, disability is a minority group that anyone can join. “Everyone in this room hopes to be disabled,” I tell the students in my disability studies seminar on the first day that I meet them. Still preening with youthful invulnerability, they mostly look at me as though I have lost my mind. Then I explain to them that old age brings disability—unless they would prefer the alternative. And then I inform them of the acronym that the

The social model of disability is proposed as an alternative to models that have viewed disability as an individual, rather than a socio-political issue. The use of this model to guide both research theory and practice is proposed in order to equalise research power relationships, and involve and empower disabled people. Health professionals have traditionally reinforced the medical model of disability in both research and practice, and this has been seen as contributing to the oppression and marginalisation of disabled people. If the social model is to achieve wider dissemination, it would appear important to develop a dialogue between disabled people and health professionals. However, because of negative perceptions it can be difficult for health professionals to find an appropriate position in relation to disabled people, research and the social model of disability. While not denying the past, it appears essential to look at ways in which disabled people and health professionals can work together to overcome the oppression and marginalisation that has been linked to the provision of health services.

This book explores the dynamic role of love in German-Jewish lives, from the birth of the German Empire in the 1870s, to the 1970s, a generation after the Shoah . During a remarkably turbulent hundred-year period when German Jews experienced five political regimes, rapid urbanization, transformations in gender relations, and war and genocide, the romantic ideals of falling in love and marrying for love helped German Jews to develop a new sense of self. Appeals to romantic love were also significant in justifying relationships between Jews and non-Jews, even when those unions created conflict within and between communities. By incorporating novel approaches from the history of emotions and life-cycle history, Christian Bailey moves beyond existing research into the sexual and racial politics of modern Germany and approaches a new frontier in the study of subjectivity and the self. German Jews in Love draws on a rich array of sources, from newspapers and love letters to state and other official records. Calling on this evidence, Bailey shows the ways German Jews' romantic relationships reveal an aspect of acculturation that has been overlooked: how deeply cultural scripts worked their way into emotions; those most intimate and seemingly pre-political aspects of German-Jewish subjectivity.