COTOGA: participación, lucha y colectivo / COTOGA: participation, struggle and collective

Desde la creación de la Asociación Profesional Gallega de Terapeutas Ocupacionales (APGTO) en 1983, siendo la primera a nivel estatal, se luchó activamente en nuestra comunidad para tener una red organizativa fuerte y sólida que representase y defendiese los intereses de la terapia ocupacional. El camino realizado por la APGTO desembocó el 30 de octubre de 2017 al crearse el que es hoy, el Colegio Oficial de Terapeutas Ocupacionales de Galicia, una entidad pública con representación jurídica propia, organizada de manera altruista por una junta directiva liderada por terapeutas ocupacionales y creada con el fin de defender los derechos y deberes de las personas colegiadas y de la población susceptible de su intervención y, además de contribuir a la difusión y promoción de la actividad profesional de terapia ocupacional en sus diferentes ámbitos. (AU)

Since the creation of the Galician Professional Association of Occupational Therapists (APGTO) in 1983, being the first at the state level, there has been an active struggle in our community to have a strong and solid organizational network that represents and defends the interests of occupational therapy. The path followed by the APGTO ended on October 30, 2017 with the creation of what it is today, the Official College of Occupational Therapists of Galicia, a public entity with its own legal representation, altruistically organized by a board of directors led by occupational therapists and created in order to defend the rights and duties of the collegiate people and the population susceptible to their intervention and, in addition to contributing to the dissemination and promotion of the professional activity of occupational therapy in its different fields. (AU)

“Ser, hacer y llegar a ser” del consejo general de colegios de terapeutas ocupacionales (CGCTO) / Being, doing and becoming of the general council of occupational therapist colleges (GCOTC)

La nueva Junta del Consejo General de Colegios de Terapeutas Ocupacionales acabamos de embarcarnos en este nuevo desafío de seguir navegando por y para la Terapia Ocupacional. Siento que no vamos solas y que nuestro mayor deseo es que este viaje lo hagamos junto con el resto de compañeros/as terapeutas ocupacionales. Para mí, es la mejor manera de que entre todos/as podamos contribuir al crecimiento de nuestra profesión, cada uno desde su lugar, en esta realidad presente y de la mejor manera que sea posible. (AU)

The new General Council Of Occupational Therapist Colleges Board has just embarked on this new challenge of continuing to navigate through and for Occupational Therapy. I feel that we are not going alone and that our greatest wish is that we do this together with the rest of our partners occupational therapists. For me, it is the best way for all of us to contribute to the growth of our profession, each one from their place, in this present reality and in the best possible way. (AU)

Apuntes sobre Historia de la Oncología en Cuba / Notes on History of Oncology in Cuba

RESUMEN Muchos son los resultados relevantes de la Oncología cubana, gracias a los médicos, científicos y académicos que siempre han estado a la vanguardia de la lucha contra el cáncer, no sólo en Cuba sino también en Latinoamérica a lo largo de más de 170 años. El pueblo cubano, con su espíritu humano y colaborador, hizo aportes que ayudaron en los momentos difíciles, donde los gobiernos trataban de limitar el presupuesto para una obra tan noble como la lucha contra el cáncer. Fue la política de salud adoptada por el gobierno revolucionario, la que permitió el acceso a la atención gratuita a todo paciente oncológico poniendo a su alcance los recursos disponibles en su lucha contra esta tenebrosa enfermedad. La creación de la Unidad Oncológica de Matanzas ha sido y es hoy una muestra de tan noble obra. Con el objetivo de exponer las características del surgimiento y desarrollo de la oncología en Cuba se realiza el presente trabajo (AU).

SUMMARY There are many relevant results of Cuban Oncology, thanks to our doctors, scientists and academics who have always been at the forefront of the fight against cancer, not only in Cuba but also in Latin America for more than 170 years. The Cuban people, with their human spirit and collaborator, made contributions that helped in difficult times, where governments tried to limit the budget for a work as noble as the fight against cancer. It was the health policy adopted by the revolutionary government, which allowed access to free care for all oncological patients, putting at their disposal the available resources in their fight against this dark disease. The creation of the Oncological Unit of Matanzas has been and is today a sample of such a noble work. With the aim of exposing the characteristics of the emergence and development of oncology in Cuba, the present work is carried out (AU).

Caregiving and volunteering among older people in Sweden--prevalence and profiles.

This study examines the role of older people in Swedish society by exploring the prevalence of their informal caregiving and volunteering and by analyzing the profiles of these contributors of unpaid work. Data were collected by means of telephone interviews in a Swedish representative survey conducted in 2005. Our analysis reveals three distinct profiles of people involved in unpaid activities. One of these consists of those involved both in informal help giving and volunteering, a group that has been labeled "super helpers" or "doers" in earlier research. It is important for social policy planners to recognize these groups of older people and better understand the dynamics of their unpaid work in order to ascertain whether they might need support as providers and to enhance their well-being. There does not seem to be any simple contradiction between the parallel existence of a universal welfare model of the Swedish kind and an extensive civil society in which older people play important roles as active citizens.

The early history (1909-1961) of Epilepsia, the journal of the International League Against Epilepsy, and its echoes today.

This paper records the history of Epilepsia, the journal of the International League Against Epilepsy, from its inception in 1908/1909 until the beginning of its fourth series in 1961. During this time, publication was interrupted on three occasions and so the journal appeared in four series, with a complex numbering system. Over the years, the content and format of the journal has varied. Its role has changed over the years, at times primarily as a scientific organ and at other times as a source of ILAE news and reports. Concerns throughout its history have included its role as an historical record, its international representation, financial vicissitude, quality of papers, the balance between basic and clinical science, the value of clinical papers, and issues of overspecialization. Epilepsia is today the leading clinical epilepsy journal; but these are still significant concerns, and a knowledge of the history of Epilepsia is important for understanding the current position of the journal.

The changing face of voluntary welfare provision in New Zealand.

This paper contributes a micro-level analysis of voluntary welfare providers, an under explored avenue of geographical research. It analyses the localised social impacts of the macroeconomic restructuring of the Welfare State in New Zealand in the 1980s and 1990s on the work of voluntary service organisations (VSOs) and drop-in centres (DICs) as spaces of care in Dunedin, a small South Island city. We document differences among VSOs and DICs in terms of funding, clientele, and adjustments to service provision to satisfy increasing numbers of patrons and the changing composition of demand. Our findings suggest policy recommendations which, we believe, would do much to enhance the ability of both DICs and smaller VSOs to meet client needs.

Critical role of the March of Dimes in the expansion of newborn screening.

Expansion of newborn screening (NBS) has been driven primarily by a combination of advances in technology and medical treatment, and the sustained advocacy efforts of consumers and voluntary health organizations. The longstanding leadership of the March of Dimes has been credited by many as a critical factor in the expansion and improvement of state NBS programs. From the historic vantage point of four decades of March of Dimes involvement with newborn screening, this report reviews the unique origin of the first newborn screening test, and identifies from this point of origin several of the elements which still define the evolution of advocacy for NBS today. It also documents activities at the federal level and in seven states that have lead to expanded screening for newborns. Advances in NBS technology and medical treatment have informed policy development. Mobilization of volunteers and focused advocacy activities have brought about expansion of screening opportunities for newborns across the United States. But more work is needed. Continued application of the effective strategies identified in this report will help assure that all families have the best possible chance of assuring that their newborns do not have to suffer the complications of conditions that we know can be treated effectively.

Living Well II: a review of progress since 2003.

Epilepsy as an issue for the public health community has a relatively short history in the United States. Not since the 1970s, when Congress established the Commission for the Control of Epilepsy and Its Consequences and the publication of its formal report, "Plan for Nationwide Action on Epilepsy," has significant attention been paid to the public health implications of epilepsy. In fact, until the U.S. Congress established a small epilepsy program at the Centers for Disease Control and Prevention (CDC) 12 years ago, the condition was practically invisible at all levels of organized public health. Since then, two major conferences, and the recommendations arising from them, have generated a substantially increased level of activity in research, surveillance, and the production and distribution of public education materials, as well as a national initiative to improve access to care and to prevent epilepsy's negative social impact. Even at the state level, long devoid of any attention to epilepsy in public health planning or provision of services, things are beginning to change, and new demonstration programs designed to identify and serve vulnerable populations with epilepsy are underway. This review highlights these activities, reflects a new and heightened level of attention to epilepsy, and speculates on what may lie ahead in the ongoing effort to give epilepsy greater visibility and higher priority in the public health arena.

From representation to mediation: the shaping of collective mobilization on muscular dystrophy in France.

How, and to what extent, do patient organisations renew traditional forms of social participation and protest? This question is examined, drawing on a socio-historical case study of the Association Française contre les Myopathies--French Muscular Dystrophy Organisation (AFM). The originality of the AFM is that it has not been content to endorse the classic role of representation of people with muscular dystrophy (MD) and their families. It has also articulated and structured different social spaces that allow people suffering from genetic diseases and severe disabilities to be considered as fully-fledged human beings, persons, and citizens within those spaces. Based on quantitative data and methods, this paper aims to characterize this reconfiguration of social spaces that the AFM has undertaken. My contention is that it has given shape to a different form of collective mobilization, one in which the patient organisation is a mediator between different social actors, as much as a patients' representative. It helps a new issue, here MD, to emerge so that the largest possible collective designate it as a general public concern. As we shall discuss, this renews the question of patients' collective identity and citizenship.

Introduction: Patient organization movements and new metamorphoses in patienthood.

In this introduction, we examine health activism as one expression of an emergent 'politics of vitality' or flurry of activity around health matters that includes: advances in technoscientific medicine, healthcare restructurings, and a re-thinking of science-society contracts. In querying politicized mobilizations around 'health matters and the mattering of health,' we provocatively entitle our discussion 'patient organization movements'. This marks an invitation to interrogate (in reverse order) each term along the way, pausing in our concluding discussion to turn our attentions to the patient. The figure of the patient is thematized as an historical inscription and a formidable dimension of personhood under modernity/late modernity. Moreover, we argue that conventional categorizations of the patient are undergoing accelerated processes of change at the present time. We characterize three transformational trends: moves to author and authorize patienthood, mutiny from patienthood, and mutations in the category of the patient. Such metamorphoses in patienthood represent both reflections and repercussions--at once consequences and catalysts--of the proposed politics of vitality. We explore the pluralization of the patient's persona via a closer look at the 11 empirical studies of health activism that comprise this collection.

The field of psychiatric contention in the UK, 1960-2000.

In this paper I discuss the question of how we should understand the concept of "social movements", particularly as applied to health related movements. My argument is that movements should be understood as "fields of contention". This concept, as I develop it, emphasizes two key aspects of social movement mobilization. Firstly, departing from traditional models of movements, which tend to view them as unified "things", it draws our attention to the numerous groups and agents who interact within the internal space of a "movement" and to the relations, alliances and conflicts between those various groups/agents as they unfold through time. Secondly, it draws our attention to the embedding of social movement struggles within multiple differentiated contexts of struggle, each of which affords different opportunities for struggle but each of which makes different demands upon activists if struggle is to prove effective. The model of fields of contention is explored within the paper using empirical data on a variety of "social movement organizations" (SMOs) which have formed around the mental health system in the UK over the last forty years.

Contesting contraceptive innovation--reinventing the script.

The article describes how the merging of Southern and Northern women's health groups resulted in a powerful transnational movement, with a collective oppositional identity based on shared solidarity in campaigns for reproductive rights and against state coercion in reproductive matters. It focuses on the ways in which the movement framed issues of rights and safety and pointed to the possible abuse potential of two new longer-acting contraceptive technologies, Norplant and the anti-fertility vaccines. The contestations by women's health advocates resulted in the emergence of a strong commitment among scientists to involve women's health advocates in the development and introduction of new contraceptive technologies. By engaging in the construction of safety and efficacy claims, and by outlining conditions for the introduction of the new technologies (so-called introduction scripts) women's health advocates were able to reinscribe the technologies with representations of bodily integrity and reproductive rights, rather than population control. I argue that a split within the women's health movement on the need to ban the new technologies did not weaken its impact, but, in fact, enhanced this success. I describe, in detailed case studies on the Norplant and Anti-fertility vaccine controversies, how both strands of women's health advocacy claim to be able to represent the interest of users, but that their representations of users differ. The 'no-to-Norplant' and 'no-to-anti-fertility' vaccines strands see users as victims of a state-led medical establishment enabled power, which is inscribed in the technology. The more moderate strand of activism argue that women's interests and needs differ from one setting to another, and that they are best met by making available to women a range of contraceptive options which allow for a free and informed choice.

Pregnancy and infant loss support: a new, feminist, American, patient movement?

Using as examples three of the earliest pregnancy and infant loss organizations and multiple recent initiatives, I argue this is a unique patient movement, in part due to the particularities of pregnant patienthood. Although during the first 20 years of this distinctively US movement, pregnancy and infant loss support was hospital-based, there was remarkably little attention to the "medical" dimensions of these losses, e.g. etiology, diagnosis, prevention, and treatment. The thrust was instead on changing ideas and feelings. It is only since the turn of the century that bereaved parents have started to forge collaborations with physicians to work toward prevention. During the first phase (mid-1970s to mid-1990s), it was a women's movement, though it did not present itself as such, and although it was indebted to the feminist movement and included some feminist initiatives, the movement was dominated by a traditionally feminine ethos and included pro-life elements. During the second phase, as physicians and researchers have become more involved, leadership has become somewhat less female-centric while at the same time, more initiatives are explicitly feminist.

How to build an "active" patient? The work of AIDS associations in France.

"What is an "active" patient?" is a question that arises in most medicine and illness-related social science research. This article examines the normative work carried out by AIDS associations in France to define an "active" patient in healthcare and research. While the fight against AIDS is often presented as being homogenous, we look at the diversity of opinion between different associations (Aides, Act Up-Paris, Actions Traitements and Positifs). We find four different cases: the patient as manager of his illness, the empowerment of patients, the science-wise patient and the experimenter. Systematic comparison of these cases shows that these perceptions of the "active" patient, in terms of the same pathology, are based upon different ways of seeing: the nature of the relationships between the different types of knowledge of the illness (scientific knowledge, clinical knowledge, experience of the illness) and the distribution of roles and powers among the various actors in the healthcare system (the government, pharmaceutical companies, the medical profession, the patients). This article highlights the historical dynamics which allow us to have a better understanding of these differences, especially the major distinction between two generations of associations, which adopted different positions with regard to their public identity.