Theatre and Research in the Reproductive Sciences

This paper explores the power of theatre to engage the public and my personal journey using theatre as a research tool in reproductive science. I argue that the capacity of theatre to simultaneously engage the minds and hearts of audience members qua research participants affords audience members the capacity to provide researchers with insightful comments informed by the scientific, social and tacit knowledge derived from the performance, integrated with their lived experience. Theatre is a particularly important research strategy when investigating public understandings and desires about complex issues such as those related to reproductive and genetic science.     

The Visual Foucauldian: Institutional Coercion and Surveillance in Frederick Wiseman's Multi-handicapped Documentary Series

During the mid 1980s, the renowned American documentary filmmaker Fred Wiseman produced a four-part series of films that sought to record the operations of institutions in Talladega, Alabama, devoted to the care and training of people with disabilities. These films—designated as the Multi-handicapped Series—have received much less attention than Wiseman's earlier work, as if films about disability mark a drastic departure from his previous award-winning productions, such as Titicut Follies (1965) and Hospital (1970). The Multi-handicapped Series takes up general categories of disabled populations as discrete documentary topics, Deaf (1986), Blind (1986), Multi-handicapped (1986) and Adjustment & Work (1986) as opposed to a specific location as in his earlier films. As a result, the latter series of films identify social and interpersonal structures developed in the name of specific conditions. Like Foucault's research on disciplinary tactics, Wiseman's films seek out many of the segregated social spaces typically occupied by persons classified as deviant: prisons, hospitals, charity networks, sheltered workshops, resident facilities, and vocational training structures. The Multi-handicapped Series focuses on the activities of professions and practitioners in education, administration, and therapy, as well as the institutional roles designed for bodies marked as disabled. Unlike its 19th century predecessor classification, feebleminded, the latter twentieth century U.S. policy answer has been waged as a matter of dividing disabilities into a binary structure of orthopedic or cognitive categories. Such a development has left many crossover bodies in a diagnostic no-body's-land. To analyze the history of these developments, this essay recognizes the formation of today's disability category as an effect of new regimes of power; a form of domination based upon the application of particularized diagnostic pathologies that provide the basis for cordoning off bodies which fail to fit neatly within the cognitive/orthopedic binary. As documents of the social spaces that are occupied by disabled people, Wiseman's films offer a rare contemplation of institutional practices and their application to populations viewed as nonnormative.     

Relationship between Disabilities and Adoption Outcomes in African American Children

Although many children adopted from the public child welfare system have special needs, little is known about the experiences of African American adopted children with disabilities and their families. The purpose of this study is to explore different categories of disabilities, including chronic health issues; emotional, mental, or behavioral (EMB) disorders; and intellectual or developmental disabilities (IDDs) on adoption outcomes in a sample of African American children. Data were from the Post-Permanency Round II Survey collected in 2008. A random sample of 412 adoptive parents or legal guardians self-reported their children’s disability diagnoses and family caregiving experiences. Hierarchical regression modelling was used to investigate the relationship between child disability and child and parental outcomes. Results indicated that chronic health issues (β?=?.10, p?<?.05), EMB disorders (β?=?.16, p?<?.01), and IDDs (β?=?.12, p?<?.05) were positively associated with parental burden. In addition, asthma (β?=?.10, p?<?.05), from the larger physical health issue category, was also associated with parental burden. However, none of the disability categories was significantly related with caregiver commitment or adoption dissolution. Future research should disentangle the definitions of special needs or disabilities.     

Hardiness and health among women with rheumatoid arthritis

The relations among hardiness (and its components) and demographic variables, objective health, disability, and perceived health were investigated for 33 women with rheumatoid arthritis. Hardiness and demographic variables were measured once while objective health, disability, and perceived health were measured at three monthly intervals. Hardiness and/or component scores were significantly (P < 0.05) related to age and to employment status but were unrelated to education and to marital status. The control dimension of hardiness was positively correlated with the average percentage of circulating T-cells (r = 0.38, P < 0.05), and with average perceived health compared to one's same age peers (r = 0.53, P < 0.01). Hardiness appears to be a useful construct for understanding adaptation to rheumatoid arthritis, and studies of patients with chronic diseases can shed light on the precursors and consequences of hardiness.     

Public Discourse and Public Policy: Some Ways That Metaphor Constrains Health (Care)

Since the terms of the health policy debate in the United States and Canada are largely supplied by biomedicine, the current “crisis” in health care is, in part, a product of biomedical rhetoric. In this essay, three metaphors widely identified as being associated with biomedicine—the body is a machine, medicine is war,and medicine is a business—are examined with a view to the ways in which they influence the health policy debate, not only with respect to outcomes, but also with respect to what can be argued at all. The essay proposes that biomedical language itself be foregrounded as the constitutive material of public discourse on health policy.     

The past,present, and future of the biopsychosocial model: A review of The Biopsychosocial Model of Health and Disease: New philosophical and scientific developments by Derek Bolton and Grant Gillett

Health psychology is a growing field generating exciting advances in theory, research, and applications that significantly improve the lives of individuals, shape the medical profession, and inform global public policy. For over 40 years, the field has been guided by the biopsychosocial model (Engel, 1977), an interdisciplinary and multifaceted model that posits the interrelations among the biological, psychological, and socio-environmental influences on health and disease. The theoretical implications and empirical research that it has generated have been vast. In The Biopsychosocial Model of Health and Disease: New philosophical and scientific developments, Derek Bolton and Grant Gillett (2019) present a summary of four decades of scholarship. They conclude that the model has fallen short clinically, scientifically, and philosophically. Although their book is timely, well-written, thought-provoking, and designed to highlight weaknesses that could drive science and practice forward, their criticisms are not fully convincing and are open to debate. The contributions this book could make may be to challenge a new generation of scholars and scientists to demonstrate that the biopsychosocial model is more relevant than ever, especially as areas such as social genomics, psychoneuroimmunology, health disparities, and global health become more important. Despite interesting philosophical challenges presented by Bolton and Gillett, theory, research, and practice focused on health, disability, illness, and wellness should remain grounded in the biopsychosocial model.     

Ethics in Community-University-Artist Partnered Research: Tensions,Contradictions and Gaps Identified in an ‘Arts for Social Change’ Project

Academics from diverse disciplines are recognizing not only the procedural ethical issues involved in research, but also the complexity of everyday “micro” ethical issues that arise. While ethical guidelines are being developed for research in aboriginal populations and low-and-middle-income countries, multi-partnered research initiatives examining arts-based interventions to promote social change pose a unique set of ethical dilemmas not yet fully explored. Our research team, comprising health, education, and social scientists, critical theorists, artists and community-activists launched a five-year research partnership on arts-for-social change. Funded by the Social Science and Humanities Research Council in Canada and based in six universities, including over 40 community-based collaborators, and informed by five main field projects (circus with street youth, theatre by people with disabilities, dance for people with Parkinson’s disease, participatory theatre with refugees and artsinfused dialogue), we set out to synthesize existing knowledge and lessons we learned. We summarized these learnings into 12 key points for reflection, grouped into three categories: community-university partnership concerns (n?=?3), dilemmas related to the arts (n?=?5), and team issues (n?=?4). In addition to addressing previous concerns outlined in the literature (e.g., related to consent, anonymity, dangerous emotional terrain, etc.), we identified power dynamics (visible and hidden) hindering meaningful participation of community partners and university-based teams that need to be addressed within a reflective critical framework of ethical practice. We present how our team has been addressing these issues, as examples of how such concerns could be approached in community-university partnerships in arts for social change.     

Religious Involvement and Readiness to Confirm Reported Physical Disability

This investigation examines the influence of religious involvement on likelihood of verifying previously reported disability, net of current activity difficulty and self-rated health. It compares African American and white community-dwelling adults confirming (N = 348) and not confirming (N = 164) activity limitations. Logistic regressions show service attendance negatively associated with disability perception only among African Americans. For whites, use of beliefs in coping mitigates against confirmation of disability. Observed associations are conditioned by socioeconomic status and gender. These results underscore the importance of social context, as well as multidimensional religiosity, in understanding the health and disability implications of religiousness.     

Quantifying developing country research capacity in the areas of malaria,schistosomiasis, and leprosy

Implicit in addressing the issue of how to build and strengthen health related endogenous research capacity is that both donor organizations and developing country policymakers distinguish betweenhealth priorities andhealth research priorities. This distinction has important policy consequences in that the majority of developing countries are not in a position, either in financial or human resource terms, to simultaneously generate and implement broad-based priorities in both areas. In this context, it is important that health research priority setting be developed in tandem with existing research capacity. This underlines the importance of assessing the amount and nature of available expertise, and positioning research output, both in the national health needs, and the international science research contexts. The present article, which more properly constitutes a feasibility study, uses scientometric methods to assess the amount and nature of scientific output in three important tropical diseases: malaria, schistosomiasis and leprosy. The major goals of this study have been to i) compare the amount and nature of research produced in developed and developing countries for the three diseases; ii) determine in how far scientometric methods can be used to measure research capacity, and whether this measurement can facilitate the determination of health (research) priorities.     

An integrative framework for psychopathology and psychotherapy

This article presents an integrative framework for psychopathology and psychotherapy. The framework differs in kind from previous ones in that it is entirely pre-empirical (specifically, conceptual and logical) in character and does not represent an attempt to create a new empirical theory (cf. Newton's pre-empirical creation of a new conceptual system, which creation proved a necessary precondition for his subsequent empirical contentions). The present integration is accomplished in three parts. In the first of these, a definition of pathology as behavioral disability or functional impairment is presented and defended. In the second, this definition is used as a centerpiece to achieve a logical unification of many prominent explanations of psychopathology that are at present widely considered to be theoretically divergent and incompatible. In part three, established forms of intervention from our most influential schools of psychotherapy are shown to be both conceptually coherent and compatible in practice within the present overarching framework.     

Expanding the Conceptualization of Workplace Violence: Implications for Research,Policy, and Practice

Workplace violence generally refers to interpersonal aggression, sexual harassment, bullying, and other forms of discrimination and oppression occurring within the confines of the paid workplace. Workplace violence affects women across the globe, resulting in a wide range of health, economic, and social problems. We advocate for broader, transdisciplinary, intersectional, and transnational conceptualizations of workplace violence in research, policy, and practice. Supported by findings from research conducted around the globe, we argue that workplace violence occurs not only within the context of women’s paid employment in the formal workplace, but also within the contexts of other types of work in which women of all ages engage. An expanded, more inclusive conceptualization of women’s workplaces in research, policy, and practice will promote broader recognition and acknowledgement of women’s experiences of interpersonal violence in the contexts of their multiple work roles in unpaid and informal work, as well as the paid labor force. Incorporating intersectional, transnational, and transdisciplinary perspectives into research, policy, and practice related to workplace violence will expand understandings and interpretations of women’s experiences of workplace violence across the lifespan; within their own multi-faceted cultural contexts and racial, ethnic, gender, and class identities; and will facilitate transnational, cross-cultural comparisons. Implementation of policies based on expanded conceptualizations of workplace violence can contribute to more effective education and prevention efforts, improved reporting procedures, and enhanced post-violence support services and treatment programs that meet the needs of women across a wider spectrum of workplace contexts.     

Medical Education and Disability Studies

The biomedicalist conceptualization of disablement as a personal medical tragedy has been criticized by disability studies scholars for discounting the difference between disability and impairment and the ways disability is produced by socio-environmental factors. This paper discusses prospects for partnerships between disability studies teaching/research and medical education; addresses some of the themes around the necessity of critical disability studies training for medical students; and examines a selection of issues and themes that have arisen from disability education courses within medical schools globally. The paper concludes that providing there is a commitment from senior management, universities are well positioned to apply both vertical and horizontal approaches to teaching disability studies to medical students.     

One-day behavioral treatment for patients with comorbid depression and migraine: a pilot study

BackgroundMigraine is a common and disabling disorder that is highly comorbid with depression. The comorbidity of depression and migraine is a major health concern as it results in poorer prognosis and quality of life. Yet, effective treatments have rarely been investigated.Method45 patients with comorbid migraine and depression were assigned to a 1-day Acceptance and Commitment Training plus Migraine Education workshop (ACT-ED; N = 31) or to Wait List/Treatment as Usual (WL/TAU; N = 14). Assessment of depressive symptoms, general functioning, and migraine related disability were completed at baseline and 2-, 6-, and 12 weeks after the workshop.ResultsAt the 3-month follow up, participants in the ACT-ED condition exhibited significantly greater improvements in depressive symptoms, general functioning, and migraine-related disability than patients in the WL/TAU group.ConclusionA 1-day ACT-ED workshop is a promising approach to the treatment for depression and disability in migraineurs that merits further investigation.     

Multiaxial taxonomy of fibromyalgia syndrome patients

Pain, disability, and depression are present in various degrees in patients with fibromyalgia syndrome. Cluster analysis was used in this research to ascertain the existence of subgroups of patients in a fibromyalgia sample based on these variables. Two clusters were defined: one characterized by high levels of pain, disability, and depression (n=51) and another characterized by low levels of pain, disability, and depression (n=67). Multivariate analysis of variance (MANOVA) confirmed differences between clusters on these health status factors and a second MANOVA revealed that the subgroup with a poorer health status reported greater passive coping, helplessness, and stress, and less satisfaction with social support, than the subgroup with better health status. Logistic regression indicated that the best discriminator of subgroup membership was helplessness. These results suggest that different approaches to patient management, particularly intervention strategies aimed at reducing helplessness, may be beneficial for patients with high levels of pain, disability, and depression.     

Just health care (II): Is equality too much?

In a previous essay I criticized Engelhardt's libertarian conception of justice, which grounds the view that society's obligation to assure access to adequate health care for all is a matter of beneficence [1]. Beneficence fails to capture the moral stringency associated with many claims for access to health care. In the present paper I argue that these claims are really matters of justice proper, where justice is conceived along moderate egalitarian lines, such as those suggested by Rawls and Daniels, rather than strong egalitarian lines. Further, given the empirical complexity associated with the distribution of contemporary health care, I argue that what we really need to address the relevant policy issues adequately is a theory of health care justice, as opposed to an all-purpose conception of justice. Daniels has made an important start toward that goal, though there are some large policy areas which I discuss that his account of health care justice does not really speak to. Finally, practical matters of health care justice really need to be addressed in a ‘non-ideal’ mode, a framework in which philosophers have done little.     

How useful is the concept of the ‘harm threshold’ in reproductive ethics and law?

In his book Reasons and Persons, Derek Parfit suggests that people are not harmed by being conceived with a disease or disability if they could not have existed without suffering that particular condition. He nevertheless contends that entities can be harmed if the suffering they experience is sufficiently severe. By implication, there is a threshold which divides harmful from non-harmful conceptions. The assumption that such a threshold exists has come to play a part in UK policy making. I argue that Parfit’s distinction between harmful and non-harmful conceptions is untenable. Drawing on Kant’s refutation of the ontological argument for God’s existence, I suggest that the act of creation cannot be identical with the act of harming—nor indeed of benefiting—however great the offspring’s suffering may be. I suggest that Parfit is right that bringing children into existence does not usually harm them, but I argue that this must be applied to all conceptions, since Parfit cannot show how the harm threshold can be operationalised. If we think certain conceptions are unethical or should be illegal, this must be on other grounds than that the child is harmed by them. I show that a Millian approach in this context fails to exemplify the empirical and epistemological advantages which are commonly associated with it, and that harm-based legislation would need to be based on broader harm considerations than those relating to the child who is conceived.     

Medicine as Enlightenment cure: Benedetto Frizzi, physician to eighteenth-century Italian Jewish society

This article examines modern Jewish doctors and the Enlightenment in action through its analysis of Dr. Benedetto Frizzi (1756–1844) as an Enlightenment Jewish physician and public intellectual in Habsburg northern Italy. Frizzi sought to spread the new Enlightenment gospel of polizia medica—public health policy or social medicine—that he learned from its pioneering exponent, Dr. Johann Peter Frank, his teacher at the University of Pavia. Frizzi dispensed Enlightenment medicine for the benefit of the state and society in general, as well as Jewish society and culture in particular, for he saw himself as both public health crusader and doctor-priest ministering to his own people. His commitments to Enlightenment science and rationalism led him to criticize Jewish social practices harshly even as he creatively reinterpreted classic Jewish texts; accordingly, Frizzi was regarded in some quarters as subversive, while in others as an apologetic defender of Jews and Judaism. Situating Frizzi within the traditions of Jewish as well as European Enlightenment physicians, this article raises broader questions about religion and secularism in the modern discourse of medicalized Judaism.     

Health disparities between binary and non binary trans people: A community-driven survey

Abstract

Background: Genderqueer and nonbinary () people have remained largely invisible in health research. Previous research shows worse outcomes on health indicators for trans people when compared with cisgender controls, but the differences between binary trans and GQNB individuals are inconclusive.

Aims: To compare overall health and well-being of GQNB people with controls of trans men and trans women, taking into account the impact of the additive effect of their socio-economic position, as well as their current need for gender affirming medical interventions.

Methods: A community-driven survey was conducted in 2016 in five countries (Georgia, Poland, Serbia, Spain, and Sweden). Self-reported health and general well-being were analysed for differences between binary trans and GQNB respondents. The effects of multiple control variables (age, economic situation, educational level, belonging to an ethnic, religious, sexual or ability minority group, sex assigned at birth) as well as the current need for gender affirming medical interventions were controlled for.

Results: The sample consisted of 853 respondents aged 16 and older, with 254 trans women (29.8%), 369 trans men (43.2%), and 230 GQNB people (26%). GQNB respondents showed significantly worse self-reported health and worse general well-being in comparison to binary trans respondents. Additional negative impacts of having a lower educational level, having more economic stress, and belonging to a disability minority group were found. Being in need of gender affirming medical interventions contributed significantly to worse self-reported health, whereas being younger contributed to worse general well-being.

Discussion: In understanding health disparities between binary trans and GQNB people, it is necessary to take into account the additive effect of multiple socio-economic positions, and the current need for gender affirming medical interventions. The high proportion of GQNB respondents who report worse health outcomes highlights the need for policy makers and health-care providers in creating nonbinary-inclusive environments.     

On Disability and Illness. A Reply to Edwards

This paper is a reply to an article by Steven Edwards in a previous issue of Theoretical Medicine and Bioethics. In this paper Edwards discusses two types of problems which he finds to be inherent in my theory of disability, mainly as presented in my On the Nature of Health, Kluwer 1995. First, Edwards discerns a tension in my basic definition of health, a tension between my “subjectivistic” and my “objectivistic” aspirations in the definition. Second, he finds that my theory of disability does not allow for a distinction between disability due to illness or injury and disability which has no such (at least not immediate) background. In my answer to Edwards's arguments I claim that his first criticism must be due to a misunderstanding of my intentions. I find his second criticism to be more to the point. It raises important issues in the theory of health which partly concern our interpretation of the notion of illness. Edwards introduces the notion of capacity in order to separate between disability due to illness or injury and disability without such a background. In the last part of my paper I argue that this distinction, however, will not fulfil its purpose. This revised version was published online in August 2006 with corrections to the Cover Date.