Medical Model Of Disability Research Articles

What’s Best for Them: Teaching Disability Studies to Science Majors

What’s Best for ThemTeaching Disability Studies to Science Majors Anna Mae Duane (bio) In one of Seinfeld’s more controversial episodes, Jerry tells his friends that he finds Asian women particularly attractive. When someone else points out that fetishizing Asian women could be considered racist, Jerry is aghast. “If I like their race,” he demands, “how can that be racist?” Many of the students who walk into my class on disability in American literature and culture could relate to Jerry’s astonishment. Overwhelmingly, they sign up for that class because they like people with disabilities. Although the class is offered through the English department, the majority of students who enroll are science majors. Many are pre-med, often specializing in molecular biology and genetic science. Other students are majoring in fields like special education and physical therapy. They are all deeply steeped in the medical model of disability, and the attendant narrative of heroic doctors who rescue, cure, and otherwise fix their patients. They are deeply invested in being the good guys in the battle between sickness and health. A central task of my class on disability studies is to expose and interrogate the paternalism that often permeates the medical model. It is tempting—but I would argue, dangerous—to create a syllabus that simply swaps the doctor out of a heroic role into a villainous one. Much disability theory was created in explicit opposition to the assumptions that science and medicine have produced as truths about how bodies should work. One constructed “truth” that has proven particularly devastating is the assumption that medical professionals are the most valid authority on what’s best for the patient. As Nancy Mairs writes, this paternalism further diminishes the experience and agency of people with disabilities, rendering them still more marginalized. “To some extent,” Mairs argues, “paternalism infects [medical professionals’] relations with all their patients—a word that doesn’t share its root with “passive” by accident—because [physicians’] apparent (and often real) power over life and death reduces us all to a childlike dependency on their superior knowledge. We reinforce their dominance through our docility” (161). But for my students, the role of parent-doctor is an enticing one indeed, one that allows them to ease suffering, rescue the lost, and cure the sick. As young adults eager to escape their own childhood dependence, medical expertise offers tantalizing authority. My goal is not to shame them for their rescue fantasies, but rather to prompt them to ask how they might disentangle the desire to help from the need to control the unwieldiness of difference and suffering. [End Page 175] In these classes, I include texts that directly address the damage the medical model can do, such as Rosemarie Garland-Thomson’s deft analysis of the overlap in the medical specimen and the freak show carte de visite, or Lucy Grealy’s heartrending experiences as the patient of a supremely arrogant and un-empathetic oncologist. But I’ve found that one of the most effective ways to think productively about the paternalistic underpinnings of the medical model is through an even more naturalized dialog between paternalism and infantilization: the relationship between parent and child. I’ve created a cluster of texts and films that place questions of medical authority—and the normality it enforces— in a familial framework. I begin the conversation with Josh Arson’s documentary Sound and Fury, followed by Katherine Dunn’s 1989 novel Geek Love, and finishing with works by disability theorists (and parents of children with disabilities) Michael Bérubé and Rachel Adams. The Oscar-nominated Sound and Fury deals with the choices two different families make about whether or not to arrange for cochlear implants for their deaf infants. In the film, two brothers, one deaf, one hearing, both have deaf children. The hearing couple (who nonetheless have deep familiarity/family ties with deaf culture) decide to have their infant implanted before age one. But the major tension of the film stems from the desire of a deaf five-year-old girl who importunes her deaf parents for a cochlear implant. Shockingly, for my students, the parents ultimately refuse her request and do not opt...

Alison Kafer, Feminist Queer Crip (Indiana: Indiana University Press, 2013), pp. 258, ISBN: 9780253009340, £16.99, paperback.

In Feminist Queer Crip, Alison Kafer endeavours to re-politicise disability and its relations to gender and sexuality. This entails a thorough examination of the ways in which time can be or become 'crip' – a critical term for 'imagining bodies and desires otherwise' – with a focus on those bodies that won't grow, age, labour or reproduce according to normal standards of growth and productivity. Kafer also examines bodies that are visually reproduced, or omitted, to facilitate the production of a political agenda, and how the continual reproduction of the able-bodied norm may be challenged or undone. She writes with an acute awareness of intersectionality and her understanding of reproductive politics repeatedly challenges ableist notions of care, future, and productivity. She first identifies problems with the medical model of disability, which constructs a timeline that can only lead to cure or failure, and with the social model, which risks ignoring the lived realities of pain until 'cure becomes the future no self-respecting disability activist or scholar wants' (p. 7). Kafer then arrives at a political and relational stance, one which prioritises coalition over diagnosis and which recognises that disability 'does not occur in isolation' (p. 8). Her relational model takes into account partnerships with carers and attendants and assisting animals, and a focus on political allegiance allows room for Robert McRuer's theory of a 'non-disabled claim to crip': an expansive identity politics which extends beyond diagnostics and towards the deconstructive principle that everyone is, has or will be disabled, and so has a stake in dismantling the ablebodied ideal. The bounds of these relations move from the social to the temporal – Feminist Queer Crip suggests that disability occurs in time, or out of it, and is often marked by a rupture in the rhythm of ableist lifetimes.

Expanding Opportunities for People with Disabilities

The articles in this special issue on disability demonstrate the importance of attending closely to the experiences of individuals with disabilities in making decisions whether to use medical, psychological, or social interventions that may affect the person’s identity and alter subsequent experiences. Though each article focuses on the problems or merits of different types of interventions—cochlear implants, surrogate partner therapy (SPT), and growth attenuation—all of the articles draw the reader’s attention to the need to reconsider the medical model of disability and attend to the potentially corrective value of the social (or psychosocial) model of disability. The latter model of disability emphasizes the impact of prevailing social attitudes and institutions on the welfare of individuals with disabilities, while the former, with its tendency to pathologize deviations from typical species function, seems to provide a more “deterministic” and often myopic lens through which to view disability.

Impaired Encoding

Work injury compensation and pensions are often determined according to medical disability rating scales attributing a percentage to each impaired body part or function. Incorporated into central medical–administrative networks of committees and examinations, these produce disability as a calculable space. This article examines the specific case of the Israeli National Insurance regulations regarding work injuries of 1956 and analyzes the shifted order they set. Looking at this system in the specific historical context of transition from the British Mandate workmen’s compensation system to the “disability percentages” system, provides insight into the process of structuring and stabilizing durable numerical forms and the production of centralized government. Drawing on conceptualizations regarding the sociotechnical role of classification systems, I contend that through encoding and calculating classifications of disability, heterogeneity is eliminated and an ordering based on physiology is “black boxed,” illustrating the importance of technoscientific formations in structuring the “medical model of disability.”

Disability and Deviance: Dario Argento’s Phenomena and the Maintenance of Abledness as a Critical Framework

This exploration of disability directly applies Campbell's understanding of "abledness" to the film Phenomena by Italian director Dario Argento. Phenomena (1985) explores, through the diegetic response to protagonist Jennifer Corvino's ability to communicate with insects, the shifting cultural association between disability and deviance. The film begins with the traditional response to disability, what education psychologist Kaoru Yamamoto considers the cultural importance of classifying and interpreting disabled bodies by fitting them into a narrative of deviance for surveillance and control. Throughout Argento's film, characters attempt to classify Jennifer; scientists seek to diagnose her "affliction" through the medical model of disability, while Jennifer's schoolmistresses interpret Jennifer's behavior as a disciplinary problem based in environmental factors. This represents the structural model of disability, but in each instance, the attempt to classify Jennifer fails to diagnose or discipline the supposed "deviant, disabled body." Through this failure, the film dramatizes contemporary critiques of traditional models that examine disability, moving beyond to explore what Fiona Kumari Campbell has called "the maintenance of abledness" in sexed, raced, and modified bodies. By normalizing Jennifer's ability, then, Phenomena offers a framework for examining the process through which elements of "abledness" become normalized, a concept which many theorists now argue should maintain the focus of disability studies.

Analysing care-related decisions in parents of congenitally deaf children: introduction of an explanatory model

Research into issues of deafness is characterised by the dominance of the medical model of disability. Although social and cultural-linguistic models have received increasing attention from scholars, they have been used mainly in theoretical debate. Empirical application has been limited. Based on our comprehensive research project into the care-related decisions of parents of congenitally deaf children in Flanders, Belgium, an explanatory model for care-related parental decisions was constructed, which transcends the specific findings generated by our studies. This model is presented and discussed in this paper. Illustrations are provided based on our empirical findings.

Citizenship and disability: incommensurable lives and well-being

This paper explores a new political consensus promoting ‘active’ as opposed to ‘passive’ conceptions of citizenship, emerging from the late 1970s onwards, and marking the post-settlement/post-Marshellesque era of the welfare state. Reflecting this consensus, the disability rights movement critiques ‘passive’ conceptions, which are, it is claimed, supported by the medical model of disability and so-called objective accounts of ‘special needs’ and well-being – that is, accounts provided by non-disabled professionals and carers who frequently diminish the rights of disabled people to live autonomously. In contrast, ‘active’ conceptions cohere with the social model of disability supporting the values of agency and self-determination – derived, in part, from equalizing opportunities for disabled people’s social participation compared with non-disabled people; but also by promoting subjective accounts of well-being which are often incomparable or incommensurable, both between persons and across one person’s life.

Challenging nurses' cultural competence of disability to improve interpersonal interactions.

Worldwide, at least 6.9 billion people have an impairment-producing health condition. Insensitive encounters with healthcare providers (HCPs) can result in negative appraisals, fear, and avoidance, but little is known about what things are commonly perceived as insensitive. A review of published narratives describing negative encounters with HCPs was conducted. Narrative analysis was used to compare, contrast, and synthesize six themes describing the common negative encounters: (a) ignoring or minimizing their knowledge, (b) detached interpersonal interactions, (c) placing a negative skew on their life quality, (d) lack of HCP knowledge related to their complete needs, (e) assuming they should be asexual and childless, and (f) an inherent power differential. The medical model of disability is perceived by individuals with impairment-producing health conditions to inform negative encounters perceived as insensitive. This preliminary knowledge is important so we can address educational needs, plan future research questions, and establish clinical practice improvements.

Deconstructing Disability and Neurodiversity: Controversial Issues for Autism and Implications for Social Work

Disability is a socially constructed concept that can be viewed from either a medical or a social perspective. Autism, a developmental disability, can be viewed from the medical model of disability or through a new perspective brought forth by the autistic community and aligning with the social model termed neurodiversity. Using the medical model and a lens of neurodiversity, we can deconstruct the controversial issues surrounding autism and provide insights for social workers and other professionals working with the community of the disabled.

Feminist Thoughts on Freedom and Rights

My contention in this brief essay is that disability is a feminist issue with particular significance for freedom. There are two “models” for understanding disability. The “medical model of disability” has been the dominant view since the Enlightenment, when advances in science and medicine created the realization that humans can intervene in the body to overcome disease (Stiker 1999). In this model, disability is seen as an individual condition arising from a flawed body, which presents a “problem” that must be “fixed” or “cured.” The problem is intrinsic to the body, which must adapt to the preexisting environment. Disability is viewed as a loss, even a tragedy, that the person wants to escape, the appropriate response to which is pity; the less appropriate but more common response is repulsion.

Disability Simulations: Using the Social Model of Disability to Update an Experiential Educational Practice

Disability simulation as a form of experiential learning has been a popular way for students to Ȝlearn what it is like to have a disabilityȝ in many different educational curricula from nursing to recreation. There is a lack of research detailing the efficacy of such activities, and some researchers have noted the possibility of negative results. Due to the inconsistency of how such activities are introduced and debriefed, some researchers feel that the practice should be discontinued. By introducing a new paradigm known as the Social Model of Disability, the outcome of the simulation is altered dramatically. Rather than trying to accomplish some task of daily living, the student is cued to observe social interaction. Given proper direction, students have the opportunity to confront and reintegrate their own attitudes as they view such attitudes and behaviors being expressed toward them during a simulation exercise. Measurement techniques based on the Medical Model of Disability will need to be improved or replaced in order to have consistency from design to outcome. Only then can the long-term viability of the disability simulation be accurately evaluated.

Hearing Loss in Older Adults

Hearing Loss in Older Adults

On “Disability reconsidered: the paradox…” Roush SE, Sharby N. Phys Ther. 2011;91:1715–1727.

I was saddened by the comments of Roush and Sharby because they seemed to portray the word “charity” in a negative manner associated with a single philosophy. They state: “The medical model of disability can be linked to charity. If a disability cannot be eliminated, or significantly ameliorated, people with disabilities often are viewed as pitiful or helpless.”1(p1717) In fact, charity and pity are positive attributes. Here is a more typical definition of charity2: 1. Benevolent goodwill toward or love of humanity; 2. Generosity and helpfulness especially toward the needy or suffering; also: aid …

Is patient-centred care a good thing?

The problem: Rehabilitation professionals recognize the need to adopt a social as well as a medical model of disability, but the full implications of a social orientation towards disability are less easily accepted. If the physical environment can both produce and alleviate disability, so also can the social environment. If disablement is not to be seen as the problem of one individual then problems in rehabilitation must be ‘owned’ not solely by a single patient but also by other people implicated in a situation. It follows that ‘patient-centred care’, where a professional directs assessments and interventions towards one person, has shortcomings in rehabilitation. Theoretical considerations: A human systems model, shifting the focus of rehabilitation towards relationships, enables rehabilitation problems to be seen as provisional and context-dependent; the relational context of problems is clarified, and the positive and negative effects of professional power are more apparent. Clinical implications: Rehabilitation practitioners using a systemic approach would no longer view ‘carers’ and other significant individuals as mere bystanders but would integrate them within rehabilitation’s ethical and therapeutic system. Professionals would more readily recognize their roles within such a system, and would be better positioned to manage their negative as well as their positive effects.

Managing Social Exclusion through Technology: An Example of Art as Mediated Action

KeywordsDisability, Art, Technology, Social Exclusion, Social Inclusion, Agency, Mediated Actio, Culture, OmanAbstractThe compelling role that art plays in managing emotions and healing is well documented in disability research (Ainsworth-Vaughn, 1998; Corbett, 1999; Al Zidjaly, 2005, 2007). The strategic role that art can play in combating social exclusion and inciting societal change, however, is under-examined. This article extends recent developments in multimodality that build on mediated discourse analysis (Scollon, 2001) to fill this gap. It demonstrates how a person with a disability from the Islamic Arab country Oman, where the outdated medical model of disability still prevails, strategically uses a semiotic resource (Microsoft PowerPoint) to create mediated actions (animated music videos) that manage interpersonal and social exclusion. I specifically focus on how Yahya, creatively draws on various cultural customs in making these music videos. I also show how this plays a role in not only alleviating disability's effect on Yahya's social life, but also in leading to wider social change. In viewing art as a form of mediated action, this study has far-reaching consequences for both disability and multimodality studies—in particular, regarding the various multimodal ways through which exclusion can be managed. The study also contributes to our understanding of disability and its relationship to art and technology in a non-Western culture.

Parental Supports for Parents With Intellectual and Developmental Disabilities

The concept of supports is crucial in the lives of all people, especially for those with intellectual and developmental disabilities. In fact, the introduction of the idea of individuals with intellectual and developmental disabilities as needing supports was a crucial step for the American Association on Intellectual and Developmental Disabilities (AAIDD), because this concept is different from the medical model of disability, which is focused on individuals’ deficiencies. In the 11th edition of the AAIDD manual, Schalock et al. (2010) defined supports as ‘‘resources and strategies that aim to promote the development, education, interests, and personal well-being of a person and that enhance individual functioning’’ (p. 105). Supports are seen as important for these individuals participating in a variety of life domains, including social roles, which are defined as ‘‘valid activities considered normative for a specific age group’’ (Shalock et al., 2010, p. 16). Supports for one important social role, however, that is normative for many working-age adults, the social role of parenting, has received little attention in the field. There are currently few formal sources of support to assist parents with intellectual and developmental disabilities in the role of parenting, and many parents with intellectual and developmental disabilities have to rely on informal supports and are at high risk for losing their children. Over the past several decades, there have been several calls for attention to the need for parental supports, notably by Booth and Booth (1996) from Great Britain and Llewellyn and McConnell (2002) from Australia, and a few innovative programs striving to support individuals with intellectual and developmental disabilities in parenting (Feldman, 2010; Feldman, Ducharme, & Case, 1999; Garbus & Kennedy, 1999; Llewellyn, McConnell, Russo, Mayes, & Honey, 2002). Parents with disabilities have indicated that supports help them to better parent their children (McGaw, Ball, & Clark, 2002; Tarleton & Ward, 2007). However, programs serving parents with disabilities are scarce, and of these few, many are focused on increasing individual parenting ability, with less emphasis on increasing formal and informal supports. The notion of parental supports for parents with disabilities in the United States has become more prominent only recently, and a number of new state laws are now mandating courts to look at parental supports for parents with disabilities who are involved in the child welfare system. The child welfare system historically has not recognized the concept of supports for parents with disabilities or the notion of interdependent parenting, although in the past decade, there are a few small, but dramatic changes within the child welfare system signaling that the concept of parental supports may be on the rise. In the present article we discuss the rise of the concept of parental supports within child welfare legislation, define parental supports for parents with disabilities, and discuss the need for a normalization of the concept of parental supports in the field of intellectual and developmental disabilities.

Disability as Socio-Rhetorical Action: Towards a Genre-Based Approach

In many respects, the reconceptualization of genre over the past few decades mirrors that of disability. Just as disability scholars and activists reject rigid categories of fixed difference based solely on individual deviations from some supposedly neutral norm, so too have contemporary genre theorists rejected the traditional view of genre as static categories of discourse that share certain objective conventional features. Such a view is unsatisfactory because, in casting genres as decontextualized, ahistorical forms or receptacles, it fails to adequately reflect the inherently social nature of discourse and texts. Instead, genre theorists now (re)conceive genres as dynamic sites of social action. Disability is also a form of social action, a rhetorical convention used to construct and regulate human actions and interactions, and, as such, can be viewed and analysed in generic terms. Conceiving disability as genre (and metagenre) provides an additional theoretical lens for examining and transcending, among other things, the reductive and oppressive categorization deployed by the medical model of disability. A perspective informed by genre theory helps to shift critical attention from description to explanation, a necessary step in deconstructing hegemonic discourses.

False dichotomies of disability politics

This article discusses the relationship between the social and medical models of disability and between the academic and NGO communities in that field. Interviews with professionals from Norwegian disability NGOs show that while they share some of the political goals of the social model, they have a somewhat narrow understanding of the model’s critical potential. A false dichotomy has emerged in NGO discourse: The medical model, which originated as a negative construct within the social model, is reinterpreted as a legitimate conceptual alternative. This hinders dialogue between academe and the NGO community, and hampers the critical potential of the NGOs. In order to eliminate the dichotomy, it is necessary to develop the social model more extensively in discourse contexts outside the academic field.

Facilitating Critical Reflections About Disability Among Students in Speech-Language Pathology

Disability scholars argue that it is crucial for clinical professionals to critically examine the dominant and alternative discourses about disability, reflect on their own assumptions about disability, and contemplate the different roles they might take in relation to their patients. To date there are few studies examining how disability is conceptualized by speech-language pathologists (SLPs), or how those ideas affect their approach to working with persons with disabilities. The purpose of this study is to investigate whether shifts in the teaching approaches along medical, social, and experiential continua had an impact on how students in a Communicative Disorders course conceptualized the nature of developmental communicative disorders and the roles of the SLP in working with children with developmental communicative disorders. Reflective essays were collected and analyzed for 22 graduate and 38 undergraduate students in an introductory course on developmental communication disorders where different ways of thinking about disability were introduced over the course of a semester. The findings showed that most students at the start of the class held beliefs that were strongly aligned with the medical model of disability. It also showed that being introduced to different disability frameworks led them to reconceptualize both the notion of developmental communication disorders and SLP roles vis-à-vis children with communication disorders. Finally, the findings highlighted complexities and tensions involved in issues of disability in the clinical context. These results support the need for a systematic infusion and critical examination of disability perspectives in Communicative Disorders curricula.

Disability in the Middle Ages: Impairment at the Intersection of Historical Inquiry and Disability Studies

Disabled people have existed in all periods of history, but until very recently the discipline of Medieval Studies had not concerned itself with historical questions as to who, for instance, were the physically, sensory or mentally disabled in the Middle Ages, how did medieval society interact with its impaired members, or what socio-economic consequences being disabled might have implied for a medieval person. The sociological and cultural insights gained from the disciplines of Disability Studies and ethnology have provided recent emerging scholarship with a theoretical framework from which to approach the study of impairment in the pre-modern past, which supersedes the medical model of disability favoured by older historiography. Arguably a transdisciplinary approach is central to research on the topic, covering not just the various sub-disciplines of the historical sciences, such as social, economic, legal, or cultural history, but also religious studies, archaeology, history of art and literary studies. This is an exciting and important new field of research, allowing both historians and sociologists to gain insights into the lives of a previously neglected demographic group.