“Boundary Formation” Within Mutual Aid Assemblages

As grassroots user/survivor movements gained traction across the Global North, mental health activists have provided mutual aid for those who consider themselves to be negatively affected by their psychiatrization experiences and for those in search of alternative (non-biopsychiatric) frameworks for understanding mental diversity. In addition to in-person support groups, digital communication has become an integral organizing mechanism for mutual aid actions to support those in mental distress. However, activists have often found both digital and face-to-face communication to be quite taxing to their own well-being—as they negotiate personal capacity to respond to collective needs and practice self-care through limiting their engagements in radical mental health communities. While engaging in an ethnography with a mutual aid community in the United States, I explored the use of “boundary formation” to set parameters for social engagement within digital support and face-to-face encounters. Semi-structured interviews with 14 participants, focus group discussions, participatory observation, and an analysis of digital communication revealed that group members often discussed setting personal boundaries as an act of self-care, a recognition of the pitfalls associated with engaging in group dynamics during times of mental distress, and as a practice to ensure communal longevity. The ways that participants discussed and enacted boundary formation are analyzed in this paper as a way of blocking, redirecting, and restructuring digital and in-person engagements within mutual aid assemblages.

     

Drawing Disability in Japanese Manga: Visual Politics, Embodied Masculinity, and Wheelchair Basketball in Inoue Takehiko’s REAL

This work explores disability in the cultural context of contemporary Japanese comics. In contrast to Western comics, Japanese manga have permeated the social fabric of Japan to the extent that vast numbers of people read manga on a daily basis. It has, in fact, become such a popular medium for visual communication that the Japanese government and education systems utilize manga as a social acculturation and teaching tool. This multibillion dollar industry is incredibly diverse, and one particularly popular genre is sports manga. However, Inoue Takehiko’s award-winning manga series REAL departs from more conventional sports manga, which typically focus on able-bodied characters with sometimes exaggerated superhuman physical abilities, by adopting a more realistic approach to the world of wheelchair basketball and the people who play it. At the same time REAL explores cultural attitudes toward disability in Japanese culture—where disability is at times rendered “invisible” either through accessibility problems or lingering associations of disability and shame. It is therefore extremely significant that manga, a visual medium, is rendering disability visible—the ultimate movement from margin to center. REAL devotes considerable attention to realistically illustrating the lived experiences of its characters both on and off the court. Consequently, the series not only educates readers about wheelchair basketball but also provides compelling insight into Japanese cultural notions about masculinity, family, responsibility, and identity. The basketball players—at first marginalized by their disability—join together in the unity of a sport typically characterized by its “abledness.”     

A Cluster-Randomized Controlled Intervention Study to Assess the Effect of a Contact Intervention in Reducing Leprosy-Related Stigma in Indonesia

Background

Can deliberate interaction between the public and persons affected by leprosy reduce stigmatization? The study described in this paper hypothesises that it can and assesses the effectiveness of a ‘contact intervention’.

Methods/Principal Findings

This cluster-randomized controlled intervention study is part of the Stigma Assessment and Reduction of Impact (SARI) project conducted in Cirebon District, Indonesia. Testimonies, participatory videos and comics given or made by people affected by leprosy were used as methods to facilitate a dialogue during so-called ‘contact events’. A mix of seven quantitative and qualitative methods, including two scales to assess aspects of stigma named the SDS and EMIC-CSS, were used to establish a baseline regarding stigma and knowledge of leprosy, monitor the implementation and assess the impact of the contact events. The study sample were community members selected using different sampling methods. The baseline shows a lack of knowledge about leprosy, a high level of stigma and contrasting examples of support. In total, 91 contact events were organised in 62 villages, directly reaching 4,443 community members (mean 49 per event). The interview data showed that knowledge about leprosy increased and that negative attitudes reduced. The adjusted mean total score of the EMIC-CSS reduced by 4.95 points among respondents who had attended a contact event (n = 58; p <0.001, effect size = 0.75) compared to the score at baseline (n = 213); for the SDS this was 3.56 (p <0.001, effect size = 0.81). About 75% of those attending a contact event said they shared the information with others (median 10 persons).

Conclusions/Significance

The contact intervention was effective in increasing knowledge and improving public attitudes regarding leprosy. It is relatively easy to replicate elsewhere and does not require expensive technology. More research is needed to improve scalability. The effectiveness of a contact intervention to reduce stigma against other neglected tropical diseases and conditions should be evaluated.     

Synergy between adaptive management and participatory modelling: The two processes as interconnected spirals

The management of social-ecological systems often presents a complex and wicked problem due to interactions between natural processes and varied, sometimes opposing, stakeholder goals. The adaptive management and participatory modelling processes are often used either to manage or in support of the management of social-ecological systems but are not always used in concert. We suggest that these processes are naturally complementary with overlapping components and between-process feedback. As such, we advocate that adaptive management should make use of participatory modelling for the management of social-ecological systems to increase stakeholder communication, confidence, and participation, streamline management strategy development, and improve management strategy application and durability. We present a translation of the typical adaptive management cycle concept to a spiral format, as well as a representation of adaptive management and participatory modelling proceeding together as interconnected spirals.     

Counterpolitics of Liberation in Contemporary China: Corruption,Law, and Popular Religion

This article explores the hidden transfers between law and religion by focussing on the conditions of existence of ‘liberated’ peasant subjects in contemporary China. The post-Maoist era sought to create new citizens from the collectivised Maoist masses who are subject to market reforms and a new politics of ‘governing through law’ (fazhi). At the same time, new religiousities have blossomed in the Chinese countryside. Representing ‘feudal superstition’, their collective practices remain illegal until today. I argue that, beyond the issue of belief, contemporary ‘feudal superstition’ does not represent a form of anti-secular resistance, but rather confirms the central tenets of Chinese secularism from the perspective of ‘failed’ peasant subjects. Where the realities of market liberalisation and governing through law are experienced as corruption, feudal superstition recreates the conditions to realise liberated peasant subjects: a participatory local public sphere, political visibility, investments in the public good, and a new collective property.     

Network Approach for Analyzing and Promoting Equity in Participatory Ecohealth Research

Effective involvement and equity in participation between men and women and the various community groups are likely to influence the equity in the sharing of the development outcomes of any participatory research project. The CARUSO project, a participatory research based on the ecosystem approach to human health, showed that the inhabitants from Brasília Legal, a small village located on the river banks of the Tapajós river in the Brazilian Amazon, are exposed to mercury through fish consumption; a subsequent participatory intervention based on dietary changes was effective in reducing mercury exposure of the population. In the present study, we focus on equity in participation and analyze the discussion network about mercury and health to measure individual and group involvement in the community. Participation in the discussion network is associated with the awareness of the critical information necessary to allow the individual to change dietary habits toward the preferential consumption of the less contaminated fish species. Our network analysis shows that gender, age, religion, education, subsistence activities, and spatial distribution of the houses are key elements affecting the involvement of the population in discussions about mercury and health. Based on these results, we propose strategies for integrating the research results and the knowledge of the villagers in a new cycle of participatory research in order to address the lack of involvement of some groups and to promote equitable participation and benefit sharing.     

Biodiversity on the brink: Evaluating a transdisciplinary research collaboration

Global biodiversity is facing an extinction crisis. Australia has one of the highest terrestrial species extinction rates in the world. Scientists, policy advisors and governments have recommended that the issue be addressed at a landscape-scale, while noting that there are significant knowledge gaps that are hampering implementation of such an approach. From 2011–2015, the Australian Government funded a transdisciplinary research program, the Landscapes and Policy Hub, to meet this need. Transdisciplinary research is widely acknowledged as essential to address the complexity of contemporary environmental problems. Given that such research programs are in their infancy, it is important to evaluate their efficacy and provide an empirical basis for improving their design. This paper presents an evaluation of the strategies fostering transdisciplinarity adopted by the Landscapes and Policy Hub. A heavy emphasis on communication, with skilled knowledge brokering, regular face-to-face meetings using participatory activities and shared field engagements enhanced transdisciplinary interaction between researchers and research users. However, establishing a fully integrated interdisciplinary research program remained a challenge. Efforts to enable shared conceptual frameworks to emerge through adaptive application of theory in practice could have been balanced with increased effort at the outset for researchers and research users to collaboratively formulate shared research questions, leading to the establishment of teams that could address these questions through cross-mobilisation of interdisciplinary expertise.     

Plant–insect chemical communication in ecological communities: An information theory perspective

Cross-species communication, where signals are sent by one species and perceived by others, is one of the most intriguing types of communication that functionally links different species to form complex ecological networks. Global change and human activity can affect communication by increasing fluctuations in species composition and phenology, altering signal profiles and intensity, and introducing noise. So far, most studies on cross-species communication have focused on a few specific species isolated from ecological communities. Scaling up investigations of cross-species communication to the community level is currently hampered by a lack of conceptual and practical methodologies. Here, we propose an interdisciplinary framework based on information theory to investigate mechanisms shaping cross-species communication at the community level. We use plants and insects, the cornerstones of most ecosystems, as a showcase and focus on chemical communication as the key communication channel. We first introduce some basic concepts of information theory, then we illustrate information patterns in plant–insect chemical communication, followed by a further exploration of how to integrate information theory into ecological and evolutionary processes to form testable mechanistic hypotheses. We conclude by highlighting the importance of community-level information as a means to better understand the maintenance and workings of ecological systems, especially during rapid global change.     

A participatory epidemiological and One Health approach to explore the community’s capacity to detect emerging zoonoses and surveillance network opportunities in the forest region of Guinea

The Ebola virus disease epidemic that threatened West Africa between 2013 and 2016 was of unprecedented health magnitude. After this health crisis, studies highlighted the need to introduce community-based surveillance systems and to adopt a One Health approach. This study aimed to provide preparatory insights for the definition of a community-based surveillance system for emerging zoonoses such as viral hemorrhagic fevers in Guinea. The objective was to explore the disease detection capacity and the surveillance network opportunities at the community level in two pilot areas in the forest region of Guinea, where the epidemic emerged. Based on a participatory epidemiological and One Health approach, we conducted Focus Group Discussions with human, animal and ecosystem health actors. We used a range of participatory tools, included semi-structured interviews, ranking, scoring and flow diagram, to estimate the local knowledge and perception of diseases and clinical signs and to investigate the existing health information exchange network and its related strengths and weaknesses. The results showed that there is heterogeneity in knowledge of diseases and perception of the clinical signs among actors and that there are preferred and more effective health communication channels opportunities. This preparatory study suggests that it is necessary to adapt the case definitions and the health communication channels to the different actors who can play a role in a future community-based surveillance system and provides recommendations for future surveillance activities to be carried out in West Africa.     

Setting priorities for research and development in the NHS: a case study on the interface between primary and secondary care.

Since 1991 the NHS has attempted to identify and prioritise its needs for research and development in a systematic manner. This has not been done before and there is little evidence on which to draw. Multidisciplinary expert groups have identified priorities in different topics using explicit criteria and after widespread consultation within the NHS and research community to identify pressing problems and opportunities for research. This paper focuses on a review completed in 1993 to identify research and development priorities for the NHS in relation to the interface between primary and secondary care. The review covered several recent developments which require evaluation. The authors describe the process used to identify research and development priorities in this complex subject and examine the strengths and weaknesses of the approach. This case study should help to stimulate a wider debate on methods of identifying priorities, particularly those using participatory approaches, in research and non-research contexts.     

Building Capacity in Small-Scale Mining Communities: Health,Ecosystem Sustainability,and the Global Mercury Project

The Global Mercury Project (GMP) is an initiative of the United Nations in collaboration with numerous government and nongovernment organizations to promote knowledge and capacity building on the links between small-scale gold mining practices and health, ecosystem, and social factors, and to implement interventions that reduce mercury pollution and exposure caused by mining activities in developing countries. Knowledge regarding the use of mercury and the dynamics of complex environmental, health, socioeconomic, and cultural conditions in and surrounding small-scale mining sites is particularly needed for the purpose of developing appropriate community-based measures to reduce mercury-related problems. GMP strategies aim to build upon local knowledge and practices to train miners on the use of cleaner and affordable technologies of mining and mineral processing in order to minimize negative impacts. The initiative is especially proactive in facilitating transdisciplinary and participatory models of community interaction, involving local, regional, and international stakeholders in each of the strategy design, community assessment, and community intervention phases. The six participating countries are Brazil, Indonesia, Lao People’s Democratic Republic, Sudan, Tanzania, and Zimbabwe. This article outlines GMP’s objectives and scope of activities and also highlights achievements, challenges, and opportunities for future development.     

Picking at the Paint: Viewing Contemporary Bushman Art as Art

In most writing on contemporary Bushman art the art is discussed as a tool of development, a tourism endeavor and an income generator. While these are aims both legitimate and beneficial to the communities involved, they also work (implicitly yet effectively) to separate the art, artist and subsequently the community out of which the art is produced from “the rest of us,” defining these communities as “other.” This article attempts to engage with contemporary Bushman art as art objects. Using criteria of judgment based on a functional semiotics of art, two works will be analyzed to prove that the works may be discussed as Art. The premise is that once people recognize the aesthetic intelligence imbued in these artworks they will be able to engage with the work in a way that is similarly intelligent and contemporary. The art and its people will then stand a better chance of being accepted into the realm of the everyday as opposed to being relegated to the sarcophagi of history. Once taken from this starting position, goals of community development and tourism endeavors linked to indigenous art can become that much more beneficial and life-changing for the communities concerned.     

Designing adverse event forms for real-world reporting: participatory research in Uganda

The wide-scale roll-out of artemisinin combination therapies (ACTs) for the treatment of malaria should be accompanied by continued surveillance of their safety. Post-marketing pharmacovigilance (PV) relies on adverse event (AE) reporting by clinicians, but as a large proportion of treatments are provided by non-clinicians in low-resource settings, the effectiveness of such PV systems is limited. To facilitate reporting, AE forms should be easily completed; however, most are challenging for lower-level health workers and non-clinicians to complete. Through participatory research, we sought to develop user-friendly AE report forms to capture information on events associated with ACTs.Following situation analysis, we undertook workshops with community medicine distributors and health workers in Jinja, Uganda, to develop a reporting form based on experiences and needs of users, and communication and visual perception principles. Participants gave feedback for revisions of subsequent versions. We then conducted 8 pretesting sessions with 77 potential end users to test and refine passive and active versions of the form.The development process resulted in a form that included a pictorial storyboard to communicate the rationale for the information needed and facilitate rapport between the reporter and the respondent, and a diary format to record the drug administration and event details in chronological relation to each other. Successive rounds of pretesting used qualitative and quantitative feedback to refine the form, with the final round showing over 80% of the form completed correctly by potential end users.We developed novel AE report forms that can be used by non-clinicians to capture pharmacovigilance data for anti-malarial drugs. The participatory approach was effective for developing forms that are intuitive for reporters, and motivating for respondents. The forms, or their key components, could be adapted for use in other low-literacy settings to improve quality and quantity of drug safety reports as new medicines are scaled-up.     

Integrating a participatory process with a GIS-based multi-criteria decision analysis for protected area zoning in China

Current management plans for nature reserves in China are ineffective and do not meet their intended goals of balancing conservation and development. Protected area zoning is an approach that can reduce conflict by partitioning the landscape into various land use units that are managed for different levels of human activity. In this paper, we present a systematic methodology that integrates a participatory process with Geographic Information Systems (GIS) using a multi-criteria decision analysis (MCDA) technique to guide a zoning scheme for the Meili Snow Mountain National Park (MSMNP), Yunnan. A participatory process involving multiple stakeholders and technical experts was used to establish park management objectives: nature conservation; tourism and recreation; and, community development. To meet these three objectives, criteria and impact factors for each objective were identified and weighted through a participatory process, and a GIS fuzzy set membership function was then used to generate gradient effects of each criterion. Three suitability maps of conservation, eco-tourism, and community development were generated. The three suitability maps were overlaid to generate a final combined suitability map, and five management zones (strict protected zone, ecosystem conservation zone, eco-tourism zone or buffer zone, park service zone, and traditional land use zone) were identified and mapped that corresponded to different protection and management strategies. Conservation targets (endangered species, alpine and forest ecosystems) and development zones were spatially segregated across the landscape, and the final zoning scheme was found to be acceptable by the various stakeholders.     

Ethical and epistemological insights: a case study of participatory action research with young people

Debates over how to determine age of consent for youth to participate in research feature prominently in the practice of researchers, research ethics boards (REBs), and community decision makers working with youth. In particular, tensions can arise over how the ethical principles of beneficence, autonomy, and justice are interpreted and applied in research involving young people. We discuss our experiences obtaining ethical approval to conduct a participatory action research project involving youth and the differences of opinion we encountered regarding underage youth's capability to make informed consent. We suggest that researchers, REBs, and community decision makers all share a responsibility to conduct proactive outreach to youth participants, so that they are adequately informed of their rights related to research.     

Migrant African women: tales of agency and belonging

Abstract

This paper explores issues of belonging and agency among asylum seekers and refugee women of African origin in the UK. It discusses the ways these women engendered resistance in their everyday life to destitution, lack of cultural recognition, and gender inequality through the foundation of their own non-governmental organization, African Women's Empowerment Forum, AWEF, a collective ‘home’ space.

The focus of this account is on migrant women's agency and self-determination for the exercise of choice to be active actors in society. It points to what might be an important phenomenon on how local grassroots movements are challenging the invisibility of asylum seekers’ and refugees’ lives and expanding the notion of politics to embrace a wider notion of community politics with solidarity.

AWEF is the embodiment of a social space that resonates the ‘in-between’ experience of migrant life providing stability to the women members regarding political and community identification.     

The Problem of Development in Psychology

1. The problem of development in psychology hinges on the problem of the subject matter of psychology. This dependency is discernible in the old psychology and in its contemporary trends as well. Accordingly, the definition of the subject matter of psychology expressed by the formula "man as an active agent in the environment" will lead to a specific understanding of psychological development.     

Niche theory: New insights from an old paradigm

We apply a quantification of contemporary niche theory to several related topics of current interest: competition for alternative resources, the effect of consumers on those resources, and contemporary and evolutionary patterns at the community level attributable to the sequential colonization of resources and their consumers. Although the first topic is the traditional purview of niche theory, we believe that our model brings several issues into sharper focus than heretofore: The breadths of species' niches, overlap between them and the resulting interspecific effects all depend on the strategies by which competitors exploit heterogeneous environments. For our second application, we allow the alternative resources to be animate, and discover a positive relationship between predation and prey species diversity. Because we expect such a relationship for reasons that differ from those motivating the disturbance hypothesis, these ideas are easily distinguished. Finally, we consider the development of communities whose constituent populations behave according to the tenets of niche theory. Because successive trophic levels are colonized sequentially, patterns resulting from resource competition are replaced by those resulting from predation on consumers. For instance, consumer species-abundance distributions, which are uneven initially, become increasingly even during succession. Similar processes occur in evolutionary time, but the results have been reported as individual taxon cycles of invasion, accommodation and extinction or reinvasion. Niche theory suggests strategies and efficiencies of resource use that would facilitate invasion and prevent extinction. Though these last three are novel applications, the potential of this theory far exceeds them all. Moreover, the resulting insights augment the theory itself, increasing its general applicability. As a consequence of such feedback, niche theory may yet become a unifying concept in population biology.     

Stakeholder Participation in Research Design and Decisions: Scientists, Fishers, and Mercury in Saltwater Fish

Individuals who fish and eat self-caught fish make decisions about where to fish, the type to eat, and the quantity to eat. Federal and state agencies often issue consumption advisories for some fish with high mercury (Hg) concentrations, but seldom provide either the actual metal levels to the general public, or identify the fish that have low contaminant levels. Community participatory research is of growing importance in defining, studying, and resolving complex exposure and risk issues, and this paper is at the intersection of traditional stakeholder approaches and community-based participatory research. The objective of this paper is to describe the process whereby stakeholders (fishers), were involved in directing and refining research questions to address their particular informational needs about mercury levels in fish, potential risks, and methods to maintain health, by balancing the risks and benefits of fish consumption. A range of stakeholders, mainly individual fishers, fishing organizations, and other scientists, were involved at nearly every stage. Community participants influenced many aspects of the design and implementation of the research, in the determination of which fish species to sample, in the collection of the samples, and in the final analyses and synthesis, as well as the communication of results and implications of the research through their fishing club publications, talks and gatherings. By involving the most interested and affected communities, the data and conclusions are relevant to their needs because the fish examined were those they ate and wanted information about, and directly address concerns about the risk from consuming self-caught fish. Although mercury levels in fish presumed to be high in mercury are known, little information was available to the fishermen on mercury levels in fish that were low and thus provided little risk to their families. While community participatory research is more time-consuming and expensive than traditional scientific research, both the process and results are better scientifically in terms of community relevance.     

Analysing the impact of communication and public participation on the acceptability of Germany’s Black Forest National Park

For successful management and development of protected areas in general, and national parks (NPs) more specifically, a high acceptance by local residents, interest groups, and policy makers is needed. Communication and participation as influencing factors of acceptability have mostly been analysed for already established NPs. Until today, there is little evidence as to whether communication and participation are relevant factors for gaining acceptance of NPs in their establishing phase. Using survey data regarding Black Forest NP (Germany), our aim is to ascertain how the NP administration’s communication and the participatory opportunities it provided affected the NP’s acceptability before its establishment in 2014, and how acceptability changed thereafter. The main results are: In 2014, half of the local population accepted Black Forest NP; and over the course of five years, this number increased only slightly. Regarding the information provided by the NP administration through different means of communication, almost half of the respondents felt (very) well-informed at both queried times. The public participation process accompanying the NP’s establishing phase was rated as good or very good by roughly one third of the respondents; while another third evaluated it as bad or very bad. The general participation efforts by the NP administration were evaluated mostly critically. However, respondents who showed a positive attitude towards the NP in 2019 were those who felt well-informed, rated the material as informative, the NP’s communication as honest, and the participation process as positive. Respondents were more likely to report a positive change within acceptability if they felt well-informed, had a positive impression of the NP rangers, and rated the general participation efforts as positive. These results are an important step toward better understanding the complexity of attitude formation, and they provide statistical evidence that communication and participation can influence the acceptability of protected areas from their early beginnings. Beyond our results regarding Black Forest NP, we also draw conclusions and recommendation of broader relevance.