Defining and organizing self-advocate centered groups: implications of survey research on self-advocacy groups in Japan

Ideally group members who have intellectual disabilities should have power in their self-advocacy groups, leading to groups that can be considered 'self-advocate centered.' Currently, not all self-advocacy groups can be considered self-advocate centered because group advisors have an overwhelming influence on group decisions. This article assumes that establishing self-advocacy groups in which members truly control the agenda and make key decisions is one of the most effective methods to empower people with intellectual disabilities. This study identifies factors useful in identifying 'self-advocate centered' groups, and especially focuses on the relationship between self-advocates and advisors. It is based on a quantitative research project conducted in Japan. According to the results of the research, though relational transformation between self-advocates and advisors was commonly seen in many self-advocacy groups, conflicts between them were scarcely observed. The meaning of relational transformation without conflicts is considered, along with the concepts of independence and interdependence.     

What makes a good self-advocacy project? The added value of co-production

Abstract

This article describes how two self-advocates worked with two academics and others to produce a toolkit to help self-advocacy groups run better projects. We begin by explaining why this research needed doing and how we carried out the research. We then talk about what co-produced research means to us and how we think it is different from participatory or inclusive research. We discuss whether the research and this article were co-produced. We finish by looking at why we think co-production added value to this research. Our aim with this article is to help activists and academics work together to achieve two things: good-quality research findings; and big differences to disabled people’s lives.     

Locating Self-advocacy in Models of Disability: understanding disability in the support of self-advocates with learning difficulties

Recent appraisals of self-advocacy groups of people with learning difficulties have tended to focus on the constitutional and structural facets of groups whilst failing to explicitly engage with disability theory. This paper explores different understandings of disability and examines how these are or can be implicated in the self-advocacy movement. First, the effects of the dominant individual or personal tragedy model of disability on self-advocacy will be examined with reference to the advisor's position. It is argued that if advisors hold such understandings of disability then they threaten to stifle the selfdetermination of self-advocates. Secondly, self-advocacy framed in terms of the alternative social model of disability will be presented. It is argued with reference to the advisor's role that self-advocacy is best understood and practised when it is grounded in this persuasion. Here, the views of self-advocates themselves are called upon. Finally, understanding self-advocacy in terms of the social model is taken further. It is suggested that self-advocates themselves directly challenge dominant understandings of disability in general and can contribute to the formulation of a social theory of disability.     

The role of self-advocacy in work for people with learning difficulties

This paper explores the relationship between self-advocacy and work for people with learning difficulties [1]. Explorations are based mainly on a participant observation study in which members of a self-advocacy group for people with learning difficulties included the researcher in their regular meetings. Discussions about work, most broadly defined as meaningful activity which makes a contribution to society, emerged as a critical preoccupation. We examine the importance of self-advocacy as a vehicle for people with learning difficulties who want to remove or circumvent barriers which surround their employment. Our research shows that understanding the role of self-advocacy in relation to work creates many development opportunities for both disabled employees and their prospective, or actual, employers. It is suggested that self-advocates can themselves achieve change in employers' attitudes by challenging oppressive images of people with learning difficulties in the workplace. It is hoped the paper will advance recognition of the importance of self-advocacy for maximising the participation of people with learning difficulties in work, and for acceptance of their status as workers.     

Proud to be poor? Untangling identity politics with the families portrayed in the photobook Courage (1998)

In the early 1990s, several European welfare states embraced the idea that the voice and life knowledge of people in poverty should be recognised in policymaking. In that regard, many authors proclaimed a paradigm shift from advocacy to self-advocacy, emphasising the agency of people in poverty to speak for themselves. Emblematic in these developments in Belgium was the photobook Courage, published in 1998 by an NGO called Movement for People with a Low Income and Children (BMLIK). Through documentary family photography and oral testimonies, Courage develops a visual rhetoric on the citizenship of people in poverty while reframing poverty as a violation of human rights. Historical research demonstrates, however, that Courage was produced by middle-class volunteer allies and is therefore a rhetorical tool for self-advocacy but certainly not a product of self-advocacy. Moreover, many authors have been highly critical of identity politics, since positive imagery can equally be disempowering in reinforcing neo-philanthropical principles of self-help and willpower which ultimately lead away from redistributive policies. This article therefore examines, through oral history with photo elicitation, how the people involved experienced being portrayed as the protagonists of self-advocacy on the poverty problem. The findings show how the portrayed people fluidly (dis)identified over the past 20 years through three intertwined subjective processes involving Courage as an artefact: for remembering (historical function), for assessing (evaluative function) and for advocacy (persuasive function). As such, they appear not as passive objects of others’ campaigning strategies, but as active co-constructors of self-advocacy rhetoric. Some of the pitfalls and potentials of identity politics in the struggle against poverty are discussed.     

The Impact of Self-advocacy on Families

The impact of self-advocacy on families of people with learning difficulties has rarely been instigated. A participatory research project is currently studying this question. This paper argues that adulthood is central. The meanings attached to self-advocacy by people with learning difficulties are examined to support this, and the family context explored to discover the likely experiences and influences which will condition the reception for self-advocacy. The early findings of the research-from discussions with self-advocacy groups-are presented. We should expect self-advocacy to impact on families and for this impact to exhibit itself in a variety of ways, but because of the experiences and conditioning of families, and of people with learning difficulties, the impact will be complicated. It is this real experience of self-advocacy and families which the research is investigating.     

À la recherche d’une politique biomédicale en France : chronique d’une réforme inaboutie en cancérologie

This article proposes to explore research administration practices in the analysis of the spread of biomedicine in France. This approach, combined with an analytical positioning inspired by the sociology of organisations, brings an additional element to conventional approaches to biomedicine, since it helps to identify constraints other than those associated with the scientific and clinical practices themselves. Drawing on empirical observation of the development of contemporary policy on cancer research, we will show the crucial influence of the distribution of power between the different stakeholders involved in developing public processes for promoting biomedical practices.     

Self-advocacy for People with Learning Difficulties: Does it have a future?

Within such a short-time self-advocacy has become not only fashionable amongst organisations of people with learning difficulties, but also with service providers and non-disabled individuals who have worked in traditional services. The concerns are that self-advocacy has become a process of consulting with users about what they want from services which are usually designed and delivered by non-disabled people. This had led to people recognising and accepting choices that are on offer by non-disabled people. As a consequence an artificial boundary around self-advocacy has been created which has led to people only speaking up about what society is prepared to make available (usually in form of segregated and supervised services) rather than challenging the (lack of) power that people with learning difficulties have in their lives. For people with learning difficulties to gain real change in their personal lives self-advocacy needs to be developed to ensure they not only have the communication skills, but have an appreciation of the importance of changing rules, policies and laws which institutions, local authorities and Governments make to ensure their rights are protected. If they have an appreciation of laws and policies it will result in real change and self-advocacy won't be a tool for service providers. Also, self-advocacy must include speaking up about alternatives to choices being offered, recognising the importance of supporting one another in common areas of concern and to challenge the political system to legislate to provide relevant changes. I have developed a self-advocacy framework model which includes all the elements needed to advocate and achieve permanent change.     

Towards an agenda for disability research in Europe: learning from disabled people’s organisations

This paper addresses the challenges of building capacity for collaborative participatory research with disabled people’s organisations in European countries. The paper presents initial findings from the project ‘European Research Agendas for Disability Equality’ (EuRADE), which seeks to build the capacity of civil society organisations to participate in future research collaborations in partnership with academic institutions. The findings draw on survey data identifying the research capacity, needs and priorities of 68 organisations in 25 countries and focuses, in particular, on responses from national or European level representative organisations of disabled people. The findings demonstrate a high degree of motivation and readiness for collaboration in academic research but raise concerns about the readiness of academic institutions to engage disabled people as equal partners within social model and rights‐based approaches. Respondent organisations identified a wide range of research needs that raise challenges for collaborative responses from the academic community. In this way, the findings provide a basis for developing user‐led agendas for European funded research within the emancipatory paradigm, and indentify important opportunities for new international research collaborations between activists and academics.     

From ‘for’ to ‘of’: a typology of Maltese disability organisations

The main aim of this article is to adapt the Typology of Disability Organisations that Oliver devised, and subsequently developed further in 1990, to a different context, in this case the Maltese disability sector. The paper first traces the history of the disabled people’s movement and presents Oliver’s Typology, which makes a clear distinction between organisations for and of disabled persons. The article then highlights the main characteristics of the Maltese disability sector and develops the Typology of the organisations operating within that sector. It shows how it is non-disabled people that are mostly in control of disability organisations, and suggests ways in which there can be a stronger movement towards the development and strengthening of disabled people’s organisations. The article shows how Oliver’s Typology can be used flexibly and adapted to various contexts. It also shows how drawing up a Typology of Disability Organisations can shed light on the environment within which these organisations operate, identifying areas of strength and possible areas for growth.     

100 key research questions for the post‐2015 development agenda

The Sustainable Development Goals (SDGs) herald a new phase for international development. This article presents the results of a consultative exercise to collaboratively identify 100 research questions of critical importance for the post‐2015 international development agenda. The final shortlist is grouped into nine thematic areas and was selected by 21 representatives of international and non‐governmental organisations and consultancies, and 14 academics with diverse disciplinary expertise from an initial pool of 704 questions submitted by 110 organisations based in 34 countries. The shortlist includes questions addressing long‐standing problems, new challenges and broader issues related to development policies, practices and institutions. Collectively, these questions are relevant for future development‐related research priorities of governmental and non‐governmental organisations worldwide and could act as focal points for transdisciplinary research collaborations.     

Understanding the factors that influence health promotion evaluation: The development and validation of the evaluation practice analysis survey

The demand for improved quality of health promotion evaluation and greater capacity to undertake evaluation is growing, yet evidence of the challenges and facilitators to evaluation practice within the health promotion field is lacking. A limited number of evaluation capacity measurement instruments have been validated in government or non-government organisations (NGO), however there is no instrument designed for health promotion organisations. This study aimed to develop and validate an Evaluation Practice Analysis Survey (EPAS) to examine evaluation practices in health promotion organisations. Qualitative interviews, existing frameworks and instruments informed the survey development. Health promotion practitioners from government agencies and NGOs completed the survey (n = 169). Principal components analysis was used to determine scale structure and Cronbach’s α used to estimate internal reliability. Logistic regression was conducted to assess predictive validity of selected EPAS scale. The final survey instrument included 25 scales (125 items). The EPAS demonstrated good internal reliability (α > 0.7) for 23 scales. Dedicated resources and time for evaluation, leadership, organisational culture and internal support for evaluation showed promising predictive validity. The EPAS can be used to describe elements of evaluation capacity at the individual, organisational and system levels and to guide initiatives to improve evaluation practice in health promotion organisations.     

Non-profit organisations in India: historical development and common patterns

The article documents the history of the Indian voluntary or non-profit sector involved in socio-economic development of the country. Specifically, three questions are addressed. What type of voluntary organisations existed at what periods of history, and what were their primary activities? Who were the founders, and what were their motives? Can we detect common themes or underlying patterns in the way in which the Indian voluntary sector has developed? Or in other words: what is the institutional genesis of the non-profit or voluntary sector in India? The findings are based on multiple sources — literature review, interviews and observation, and information requested through the mail. The article differs from most historical studies on Indian non-profit organisations because it takes an analytical approach by drawing from contemporary literature on such organisations.     

From the private to the public sphere: new research on women's participation in peace-building

Despite the United Nation's landmark Security Council Resolution on women, peace and security in 2000 which highlighted the importance of women's participation in peace-building, only one in 40 peace treaty signatories over the last 25 years has been a woman. Yet evidence from non-government organisations and women's rights organisations shows that women are active agents of peace, resolving conflicts at all levels of society with little or no recognition. This article discusses new research which tracks women's roles in building peace at local levels in five conflict-affected contexts: Afghanistan, Liberia, Nepal, Pakistan, and Sierra Leone. The article highlights the significance of violence against women as a barrier to peace-building, and explores how and why women's exclusion and marginalisation from peace processes tends to increase the more formal the processes become. The article uses two case studies of women's rights organisations in Afghanistan and Nepal to illustrate the research findings and demonstrate how communities can mobilise to promote gender equality and fulfil women's rights.     

Project Employ: engineering hope and breaking down barriers to homelessness

The homeless population in the US has dramatically increased in the past two decades. People who are homeless often lack skills sets such as stress management and social skills, independent living skills, and skills for vocational and leisure engagement. Best practice vocational education and training programs for individuals who are homeless recognize that success in the worker role often hinges on a person's capacity to manage day-to-day living. Life skills and pre-employment training are essential components of vocational programs but no more important than interpersonal skill development including anger management, developing self esteem and motivation, building goal setting capacity, and skills for money management, personal budgeting and self-advocacy. These areas of performance have all been traditionally included in occupational therapy's domain of practice. This article describes Project Employ, a grant funded supportive employment program that has grown out of collaboration between Duquesne University's Department of Occupational Therapy and Bethlehem Haven, an emergency shelter and residential recovery program and primary service provider for homeless people in Pittsburgh, Pennsylvania. The purpose of this article is to describe the history, structure and outcomes of Project Employ.     

Postmodern‐oriented practices and patient‐focused research: possibilities and hazards

In this article two streams of thought within family therapy, one representing a traditional research focus and the other postmodern oriented practices are brought together. A qualitative study is described that used standardised measures to monitor therapeutic practice and provide feedback on process and outcome to therapists. The opportunities and pitfalls concerning this approach are discussed and illustrated. The use of measures as conversational tools increases and expands opportunities for collaboration between children, parents and their therapists. However, in organisations these measures risk becoming tools of competition instead of conversation, which is helped when managers take responsibility for implementing and supporting a culture of feedback.     

Constructing a Modern Society Through “Depillarization”. Understanding Post‐War History as Gradual Change

The term “depillarization” (“ontzuiling”) emerged in the Netherlands during the 1970s to proclaim the end of a society dominated by “pillarization” (“verzuiling”). In breaking away from the past, a groundbreaking renewal of religious and civic life through secularization and individualization was proclaimed or deplored. As hopes of an emancipation from the past subsided in the face of a considerable continuity, depillarization became a narrative of loss and frustration. This article shows how metaphors of disaggregation such as depillarization have produced an inability to conceptualize contemporary society, accompanied by a distortion of the past as the “other” of the present. It demonstrates how such metaphors may become dominant through their ability to incorporate competing visions of social order and the integration of scholarly and popular discourse. In conclusion, this article proposes to overcome the narratives of disaggregation by interpreting post‐war history as a gradual transformation from the ideals and practices of heavy communities to those of light communities in the domains of politics, civil society and religion.     

Personal meaning in the public sphere: The standardisation and rationalisation of biodiversity data in the UK and the Netherlands

The demand for biodiversity data is increasing. Governments require standardised, objective data to underpin planning and conservation decisions. These data are produced by large numbers of (volunteer) natural historians and non-governmental organisations. This article analyses the interface between the state and the volunteer naturalists to understand the emerging patterns of information flow between them. Our results are based on research in the UK and the Netherlands. These two countries have a long history in volunteer biodiversity recording and are facing similar issues in relation to the increasing demand for standardised data. Our findings demonstrate that citizens who become involved in recording do so because they value nature and biodiversity. Recording is for them a way to enact their relationship with nature and contribute to its protection. Our findings also show that they are concerned about the increasing rationalisation in the process of data flow and about the way in which the government treats them and ‘their’ data. Our paper concludes by discussing this tension and the challenges and opportunities for biodiversity recording.     

Always Look a Gift Horse in the Mouth: Community Organisations Controlling Assets

The idea of community-based organisations (CBOs) owning or managing physical assets, such as land or buildings, has a long history in many countries. This paper examines policy and practice in the UK where there has been significant interest in this field. A variety of benefits have been attributed to the role of assets including motivating community engagement, providing a vehicle for outsourcing public services, or creating financially sustainable organisations. The empirical research reveals there is a heterogeneous set of CBOs holding assets, but the majority of them are small with few paid staff. The analysis proposes a spectrum of CBO types in the field. It concludes that policy makers will need to recognise that these types are informed by contrasting traditions, ideas and operating logics that affect their different practices and resource dependencies.