Per Koren Solvang

The emergence of an us and them discourse in disability theory

Abstract The changing social position of people with disabilities can be studied through the changing importance of three discourses: (1) normality/deviance, (2) equality/inequality, and (3) us/them. The normality/deviance discourse represents questions about rehabilitation and integration. The equality/inequality discourse represents the struggle for economic welfare and equal rights. Finally, the us/them discourse represents a valuing of disability as a basis for identity formation and as a question of ethnicity. The situation for deaf people will serve as an empirical case for outlining the theory of the three discourses. The discussion points out that the us/the outsiders discourse is underdeveloped in disability theory, and possible strategies for development are outlined

Service Provision for an Independent Life

How is an independent daily life possible for disabled people when relying upon professional service provision and the bureaucratic gate-keeping systems of the welfare state? This article discusses this question in relation to an interview study. Eighteen mobility disabled and 20 service providers in one local setting in Norway were interviewed. We point out at least three categories regarding how independence is interpreted among the disabled: the super-normal, the independent living activists, and those experiencing powerlessness and lack of support. The analysis points out how these categories are constructed in relations between the disabled person, professional service providers and the gate-keeping systems of the welfare bureaucracy.

Vulnerability as a strength: Why, when, and how?:

The purpose of this issue of the journal is to explore preconditions for transforming demanding experiences from life and sickness into personal health resources, shifting the attention of healthcare providers from risk and weakness to strength and resources. Turning vulnerability into potential assets, the contributors aim for knowledge about the strengths of people who suffer from chronic illness or belong to marginalized groups. Knowledge about people’s personal resources may encourage doctors towards empowering strategies in health promotion, diagnosis and treatment of disease, and rehabilitation suited to accommodate the diversity of members of different marginalized groups. Chronic illness and life conditions that create experiences of oppression give rise to challenges for medical epistemology and practice [1]. The biomedical tradition appreciates objective findings, while subjective symptoms have less clout. Patients with medically unexplained disorders complain that they do not feel taken seriously by the doctor for this reason. Yet, there is evidence for the impressive and independent predictive power of people’s selfassessed health regarding future disease, death, and reduced functional capacity [2]. Patients’ perspectives are underestimated resources to understand more about health and illness, especially when these are different from the doctor’s assessments or assumptions. Salutogenetic perspectives underpin the importance of acknowledging the patient as a person and mobilizing his or her strengths [3], so that the patient’s resistance resources are given the best possible conditions in the fight against illness, suffering and oppression [4]. The concept ‘‘recovery’’, as it has been developed within psychiatric rehabilitation, means to reflect on oneself in a broad sense – creating meaning and functionality, while still recognizing the realities of disability and suffering [5]. Deegan says that the aim is to be the unique human being every person is, based on his or her assets [6]. The placebo effect demonstrates that the belief that something works – hope – can mediate a medical effect. Biomedical research describes neuroimmunological mechanisms functioning as molecular messengers [7]. Healing and recovery may also be mediated through such mechanisms. Modern culture values conformity, effectiveness, independence, and health. People who are dependent on others, or who deviate from what is considered ‘‘normal’’, run the risk of social marginalization. In the time of modernity, a widespread belief is that suffering, disability, and deviance can and should be eliminated or normalized by medical intervention. The patterns of disease in Western society have changed from infections diseases towards chronic conditions such as musculoskeletal disorders, mental illness, dementia, and consequences of accidents or social stigma. When cure is not optional (chronic disease) [8] or desirable (diversity) [9], the tasks of healthcare providers are changed from ‘‘repairing the failure’’ towards commitment, care, or support. Yet, doctors may also function as agents of modernity, mediating

Developing an Ambivalence Perspective on Medical Labelling in Education: Case Dyslexia.

There are several social actors involved in the process of constructing the social meaning of dyslexia—namely, parents, teachers, educational authorities and organisations representing dyslectics. Some of these actors emphasise the constructive social powers related to the dyslexia label, while others perceive dyslexia as diagnostic reasoning counter productive to the learning processes. In the discussion of this paradox, this article uses sociological medicalisation theory as a provider of perspectives on medical labelling as contested, and on how the labelling process is socially structured. Empirically, the article is based on four studies in Scandinavia of the construction of dyslexia in different social settings, such as individual life stories, parent stories, educational politics and the legal system. The medicalisation perspective is found most useful for the understanding of undesirable effects. To understand reported experience of medical labelling as empowering, other sociological perspectives are more useful.

Accessibility and diversity: Deaf space in action

How disabled people gather and share common experiences is empirically not a well-addressed issue in discussions about disability identity and unity. Among Deaf people, there is a long tradition for meeting in transnational contexts. Based on an intensive multi sited fieldwork at several transnational events, the article presents some examples of how deaf people negotiate social positions as Deaf that value difference. They gather as a community of communicators, marked by an identification founded on sharing one anothers languages, common histories and through strong similarities in terms of culture and feeling oppressed by the hearing society. The identity negotiations taking place at these meeting places prove relevant to disabled people in the way they explore pressing issues such as accessibility and conflicting perspectives on what a disability shall mean in the lives of people affected by impairment.

Professional roles in physiotherapy practice: Educating for self-management, relational matching, and coaching for everyday life

ABSTRACT The patient’s active participation in treatment and rehabilitation represents a cultural change in clinical practice as well as a major change in physiotherapist and patient roles. This article presents findings from a study aimed at gaining a better understanding of how physiotherapists in actual practice understand their interactions with patients during the treatment process. This article reports on the findings from focus-group interviews with physiotherapists working in three different settings. Analyses of the interview data identified three modes of physiotherapy practice. In one, physiotherapists educate their patients to be self-managing in conducting exercise programs based on sound evidence. Educational films available on the Internet are included in these efforts to teach patients. In another, physiotherapists emphasize the importance of a close relationship to the patient. A good personal chemistry is believed to improve the treatment process. And finally, what physiotherapists learn about the living conditions and the biographies of their patients was shown to be very important. Understanding the importance of the life-world and taking this into consideration in the treatment process were factors considered to be central to good practice. The article concludes with a discussion linking these findings to those of other studies identifying those factors contributing to our knowledge of what is involved in biopsychosocial practice in physiotherapy.

The rehabilitation research matrix: producing knowledge at micro, meso, and macro levels

Abstract Purpose: EU policy documents and health scholars point out that in order to understand the complexity of modern health systems, as well as to devise appropriate policy responses, considering micro, meso, and macro levels is indispensable. This article aims to develop an analytical framework for how rehabilitation as an interdisciplinary field can be framed in such a three-level framework. Methods: This is a conceptual paper based on recent contributions to the development of a theory of rehabilitation. The paper applies sociological theory to build an analytical framework for a holistic understanding of rehabilitation. Results: Three groups of agents in the field of rehabilitation are identified: individuals with disabilities, professionals, and governmental authorities. The paper systematizes how these agents are positioned and act at micro, meso, and macro levels. In the intersection between the three levels of society and the three groups of actors, a nine-cell table emerges. In the cells of the table, key examples of important social processes to study in the field of disability and rehabilitation are identified. At the micro level, individuals experience a daily life relevant to rehabilitation, professionals ask what works in therapy, and policy authorities promote a strong work ethic. At the meso level, individuals with disabilities act as service user groups, professionals develop organizational designs and the policy authorities ask for cost-effective services. At the macro level, organizations representing people with disabilities lobby, professionals negotiate authorization issues, and the policymaking authorities must identify what can count as just distribution of services. The nine cells of the table are elaborated on by presenting relevant current studies exemplifying each cell. Conclusion: To systematize societal levels and agents involved is to enhance the understanding of rehabilitation as an interdisciplinary field of research. Implications for rehabilitation Rehabilitation practice and research must relate to different levels of society and identify different social agents. Service users are not only individuals receiving therapy, but also organized agents influencing the organization of rehabilitation services as well as priorities made at the level of policy development. Both the results produced by health professionals doing a clinical trial and political scientists studying rehabilitation policy disputes will improve when placed in a wide frame of knowledge production.

Between art therapy and disability aesthetics: a sociological approach for understanding the intersection between art practice and disability discourse

Abstract What emerges as art and how it is categorised are parts of a collective process taking place in art worlds and involving a wide array of social actors. In this article, the relation between four ways of framing the intersection of disability and art is discussed. These frames are art therapy, outsider art, disability art, and disability aesthetics. The article suggests the frames and the way they relate to each other as important discourses in organising the relation between disability and art. The discourses’ relevance is demonstrated by discussing three cases of art practice among disabled people. The discussion of the cases demonstrates the importance of including more than one of the four identified discourses when analysing art practice involving disability. The concluding part discusses how the intersections of disability and art can be more closely linked to the mainstream art world through the concept of social practice art.

Providing Coordinated Cancer Care—a Qualitative Study of Norwegian Cancer Coordinators’ Experiences of Their Role

Background: There is a growing need for strategies to improve coordinated, tailored services in cancer care to meet the comprehensive needs of cancer patients. In Norway, cancer coordinators (CCs) have been established to improve coordination and patient-centeredness of services. Little is known about how CCs engage to provide patients with the needed services and support throughout the treatment. Objective: The aim of this study was to explore how Norwegian CCs experience their role and how they enact it in order to enhance coordinated cancer care. Methods: The study encompasses a qualitative, hermeneutic approach, conducting semistructured in-depth interviews of 26 Norwegian CCs. The data were analyzed using thematic analysis and discussed in the light of the salutogenic theory. Results: Cancer coordinators take a holistic approach to patient care, including both patient- and system-level activities. “Providing coordinated cancer care” emerged as an overarching topic for their role. This topic was elaborated by 3 main themes: (1) finding their place and creating their function, (2) meeting the needs of cancer patients and helping them cope, (3) promoting well-functioning cancer care systems. Conclusions: Cancer coordinators evolved diversely, in adaption to the local context and patients’ needs. The functions’ diversity challenged the implementation and external role recognition. Cancer coordinators seemed to apply a salutogenic, resource-focused orientation in order to support a positive development at both the patient and the system levels. Implications for Practice: The findings reinforce the call for holistic, patient-centered services in cancer care. Cancer coordinators need appropriate support from the local management to establish the role and local collaborations.

‘‘It did not come with Hitler and did not die with Hitler.’’ The uses of the Holocaust by disability activists in Norway

When discussing present issues, vulnerable groups often compare such issues to historical atrocities, thereby injecting histories of vulnerability and oppression into contemporary debate. In 2006, the Norwegian health authorities introduced a program for registration of information about the level of functioning and the care needs of care receivers in the municipal service system, where mostly disabled people and elderly people were registered. The project triggered strong protests. The central charges were that such registration was humiliating, violated the subjects integrity, and reduced human beings to their biological (dys)functions. At one point, the protesters related the registration program to the story of the Holocaust, evoking the historical fact that registration of deviation was fundamental to the “euthanasia” killings in Nazi Germany. Numerous scholarly works discuss the legitimacy of such comparisons, but none discusses how the agents in debates think about their own use of such comparisons. In this article, we describe how the disability activists and health professionals who participated in the controversy understood, framed, and legitimated the rhetorical use of the Holocaust. Referring to Baumans normality perspective, we try to understand the logic behind the evoking of the Holocaust in debates on the situation of vulnerable groups in general. This case serves for discussion on the communication strategies (and possibilities) of minority movements within their historical and cultural legacy.