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The paper begins by noting the absence of any sustained analysis of post-war mental health pressure groups and movements. This is deemed problematic because such movements and groups have had a strong presence during this period and because movements, as such, are afforded a central role in much contemporary sociology on account of their role in the process of social change. Next the paper considers how such analysis should be conducted, and suggests a three-phase model for periodising the activity of the groups and movements of the post-war era. The largest part of the paper is then devoted to an examination of one particular aspect of the first phase: the birth of the National Association For Mental Health and their activities in their first ten years of life. Much can be learned from the study of this group. [ABSTRACT FROM AUTHOR]

This paper develops a theoretical frame for analysing social movements in/and biomedicine. Drawing from work in social movement theory and science and technology studies, the paper describes the field of biotechnology as the material/imagined space of contemporary biopolitics in the contemporary United States. Interviews with activists from four social movements, websites and written material are examined, and two processes of knowledge construction were found to be central in constituting the field of biotechnology. These processes open up multiple sites for citizen participation in the construction of scientific knowledge. [ABSTRACT FROM AUTHOR]

Public involvement in healthcare is a prominent policy in countries across the economically developed world. A growing body of academic literature has focused on public participation, often presenting dichotomies between good and bad practice: between initiatives that offer empowerment and those constrained by consumerism, or between those which rely for recruitment on self-selecting members of the public, and those including a more broad-based, statistically representative group. In this paper I discuss the apparent tensions between differing rationales for participation, relating recent discussions about the nature of representation in public involvement to parallel writings about the contribution of laypeople's expertise and experience. In the academic literature, there is, I suggest, a thin line between democratic justifications for involvement, suggesting a representative role for involved publics, and technocratic ideas about the potential ‘expert’ contributions of particular subgroups of the public. Analysing recent policy documents on participation in healthcare in England, I seek moreover to show how contemporary policy transcends both categories, demanding complex roles of involved publics which invoke various qualities seen as important in governing the interface between state and society. I relate this to social-theoretical perspectives on the relationship between governmental authority and citizens in late-modern society. [ABSTRACT FROM AUTHOR]

The aim of this empirical investigation is to analyse the social movements brought about by autism-related issues. It is suggested that both the autism-category changes in the late 1980s, and the development of educational and behavioural methods in the United States, have given rise to a large-scale mobilisation around the changes in the definition of autism and interventions in many countries. The present paper highlights the historical dynamics of the mobilisation of French parents’ associations and the engagement of autistic persons’ organisations. The role of the French parents’ associations has been studied over the last 40 years to show how they have contributed to shaping public policy in France and how they have favoured the American model of autism despite the French professionals’ resistance. At the international level, the newly-born associations of autistic individuals have introduced new actors who sometimes reproach the parents’ associations for speaking on their behalf. These new associations, such as self-help groups, have a political identity problem. Their members no longer want to be considered as patients but as individuals with a different cognitive mode of functioning. Their actions can be analysed in the broader context of the disability movement. If the disability movement is considered as the latest generation of social movements, the action of autistic persons can be viewed as the latest generation of the disability movements. [ABSTRACT FROM AUTHOR]

Abortion represents a particularly interesting subject for a social movements analysis of healthcare issues because of the involvement of both feminist pro-choice activists and a segment of the medical profession. Although both groups have long shared the same general goal of legal abortion, the alliance has over time been an uneasy one, and in many ways a contradictory one. This paper traces points of convergence as well as points of contention between the two groups, specifically: highlighting the tensions between the feminist view of abortion as a women-centred service, with a limited,‘technical’ role for the physicians, and the abortion-providing physicians’ logic of further medicalization/professional upgrading of abortion services as a response to the longstanding marginality and stigmatisation of abortion providers. Only by noting the evolving relationships between these two crucial sets of actors can one fully understand the contemporary abortion rights movement. We conclude by speculating about similar patterns in medical/lay relationships in other health social movements where‘dissident doctors’ and lay activists are similarly seeking recognition for medical services that are controversial. [ABSTRACT FROM AUTHOR]

This paper addresses the impact on midwifery of its recent integration into the provincial health care system in Ontario, Canada. Data are derived from participant-observation, primary and secondary source documents, and key informant interviews. Based on these data. I argue that midwifery has changed throughout the integration process but it has also successfully resisted change Specifically, the organisation of the midwifery community evolved from an amorphous social movement to a more bureaucratically organised professor The regulation of midwifery also shifted from direct-regulation by clients to professional self-regulation. The educational model of midwifery also changed from an eclectic apprentice-based approach to a more standardised baccalaureate degree programme. The midwifery model of practice, however, was sustained. Although these changes occurred at the hands of key members of the midwifery community, they were made in response to the structural context of the health care system into which they were attempting to become integrated. [ABSTRACT FROM AUTHOR]

This paper presents the results of a qualitative study of coping stresses and strategies among a sample of parents with autistic children. The most serious stresses that parents faced included problems with the lack of normal language, disruptive and violent behaviour, inappropriate eating and toileting anal inappropriate sexual expression. Most parents used a variety of coping strategies, the most common of which included the use of service agencies, family support, social withdrawal, religion, normalisation, individualism and activism. Although no single coping strategy seemed to provide a definitively better outcome for the parents' adjustment, the use of services and family support appeared to provide the most successful strategy of coping for a substantial number of parents. [ABSTRACT FROM AUTHOR]

This paper argues that a health consumer movement has developed in the United Kingdom over the last decade. Drawing on two empirical studies of groups that promote and/or represent the interests of patients, users and carers, it argues that groups formed by people with personal experience of a condition are now more widespread. Feelings of pain and loss can lead to the identification of others in a similar position, and to the formation of groups and action in the political sphere. Research shows that groups share a common discourse and follow similar participative practices, and there is extensive networking. Informal and formal alliances have formed to pursue joint action and indicate a wider health consumer movement. As governments have also increased the opportunities for participation, this has the potential for patients and carers to shape services in ways more responsive to their needs. [ABSTRACT FROM AUTHOR]

People who have been diagnosed with serious mental illness have a long history of confinement, social stigma and marginalisation that has constrained their participation in society. Drawing upon the work of Gilles Deleuze and Felix Guattari, we have used the concepts of: assemblages, major and minor and deterritorialisation to critically analyse two pervasive and 'taken‐for‐granted' assemblages in mental health: recovery (including clinical recovery, social recovery and recovery‐oriented practice) and social inclusion. Our analysis explores how dominant and oppressive forces have been entangled with liberating and transformative forces throughout both of these assemblages – with dominant forces engaging in ongoing processes of capture and control, and transformative forces resisting and avoiding capture. In pursuit of social transformation for people categorised with serious mental illness, deterritorialisation is posited as a potential way forward. To have transformation in the lives of mental health service users, we present the possibility that ongoing, disruptive movements of deterritorialisation can unsettle majoritarian practices of capture and control – producing liberating lines of flight. [ABSTRACT FROM AUTHOR]

As health social movements (HSMs) and complementary and alternative medicine (CAM) professions increasingly mount challenges to the authority of medical knowledge, the tendency for the medical research community and medical profession to dismiss such epistemic challenges (termed here‘paternalistic progressivism’) and the corresponding response from challengers that medicine is corrupt (termed here‘medical devolution’) has given way to a process of incorporation of challenges under the rubric of evidence-based research (termed here the epistemic dimension of‘medical modernisation’). Under conditions of medical modernisation the distinction between lay/alternative knowledge and scientific knowledge, upon which the epistemic authority of medicine rested, is submerged in a more complex field of competing scientific networks and research programmes. Furthermore, the older policy of transmitting science to an illiterate public and suppressing dissidents is replaced by an emerging system of the‘public shaping of science’, in which there is both greater agency of social movement/lay advocacy organisations and greater recognition of the legitimacy of that agency. Indirect and direct forms of the public shaping of science are discussed, as are emergent problems of co-optation. Understanding the emergent epistemic politics that are characterised here as medical modernisation requires an ongoing theoretical integration of medical sociology and the sociology of science. [ABSTRACT FROM AUTHOR]

This article uses the narrative of one woman, Clara Larson, to explore changes over time in the experiences of illness available to women diagnosed with breast cancer. To claim that different illness experiences become available at different times is simply to acknowledge that experiences of disease are shaped not only by the individual circumstances of disease sufferers and the particular character of their pathologies, but by culturally, spatially and historically specific regimes of practices. This article explores the impact of social movements on the regime of breast cancer and makes four contributions to the scholarship on illness experience. First, it offers the conceptdisease regimeas a way of conceptualising the structural shaping of illness experience. Second, it demonstrates the value of incorporating social movements more thoroughly into the study of illness experience. Third, it proposes that social movements change illness experiences in two ways: (1) by changing the sufferer or her relationship to the regime's practices; and (2) by changing and expanding the regime's actual practices. And fourth, it demonstrates how gender and sexuality are constituted within disease regimes and are challenged by social movements. This article is informed by four years of ethnographic research conducted in the San Francisco Bay Area between 1994 and 1998, supplemented by historical research and more than 40 taped interviews and oral histories with current and former breast cancer patients, activists, educators, scientists, support group leaders and volunteers. [ABSTRACT FROM AUTHOR]

Social movements organised around health-related issues have been studied for almost as long as they have existed, yet social movement theory has not yet been applied to these movements. Health social movements (HSMs) are centrally organised around health, and address: (a) access to or provision of health care services; (b) health inequality and inequity based on race, ethnicity, gender, class and/or sexuality; and/or (c) disease, illness experience, disability and contested illness. HSMs can be subdivided into three categories: health access movements seek equitable access to health care and improved provision of health care services; constituency-based health movements address health inequality and health inequity based on race, ethnicity, gender, class and/or sexuality differences; and embodied health movements (EHMs) address disease, disability or illness experience by challenging science on etiology, diagnosis, treatment and prevention. These groups address disproportionate outcomes and oversight by the scientific community and/or weak science. This article focuses on embodied health movements, primarily in the US. These are unique in three ways: 1) they introduce the biological body to social movements, especially with regard to the embodied experience of people with the disease; 2) they typically include challenges to existing medical/scientific knowledge and practice; and 3) they often involve activists collaborating with scientists and health professionals in pursuing treatment, prevention, research and expanded funding. This article employs various elements of social movement theory to offer an approach to understanding embodied health movements, and provides a capsule example of one such movement, the environmental breast cancer movement. [ABSTRACT FROM AUTHOR]

A study of the British Mental Health Users' Movement (MHUM) is reported based upon interviews with some of its participants. These accounts are analysed in terms of three main themes: ideology and policy; relationships between users and non-patients: and relationships between the movement and statutory and voluntary agencies. The data are discussed in relation to international comparisons and with regard to preceding opposition to traditional psychiatric theory and practice in Britain. The emergence of the MHUM is accounted for within the context of existing theoretical analyses of new social movements. Strengths and weaknesses of the movement are highlighted and prospects for its future discussed. [ABSTRACT FROM AUTHOR]