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Changing the Social Relations of Research Production?
Abstract
This paper will argue that research on disability has had little influence on policy and made no contribution to improving the lives of disabled people. In fact, up to now the process of research production has been alienating both for disabled people and for researchers themselves. Neither positivist nor interpretive paradigms are immune from the characterisation of research as alienation, and hence it is suggested that the only way to produce unalienated research is to change the social relations of research production. This change will require the development of an emancipatory research paradigm and both the development of and agenda for such a paradigm are briefly considered.
... The social model is rooted in the disability rights movement in the 1960s, when disabled people fought to make a distinction between disability and impairment, arguing that disability is more about the loss or limitation of opportunities that prevent people with impairments from participating socially like others because of physical and social barriers (Finkelstein and French 1993). In this vein, a criticism of traditional academic research on disability is that it focuses on impairments, and therefore contributes to the disability of the people concerned instead of improving their lives (Oliver 1992). In addition, traditional research is seen as alienating and disempowering by the disabled 'researched' (Kitchin 2000). ...
... In addition, traditional research is seen as alienating and disempowering by the disabled 'researched' (Kitchin 2000). Hence, the only way to improve life of disabled people with research would be to modify the social relations of research production, by involving them in the co-production of research (Oliver 1992). Being involved in the co-construction of research is a way to enable the disabled people to empower themselves, both through the transformation of the social relation of research (modification in power relations, reciprocity in benefits) and through the transformation of the material of research (Barnes 2003;Oliver 1992). ...
... Hence, the only way to improve life of disabled people with research would be to modify the social relations of research production, by involving them in the co-production of research (Oliver 1992). Being involved in the co-construction of research is a way to enable the disabled people to empower themselves, both through the transformation of the social relation of research (modification in power relations, reciprocity in benefits) and through the transformation of the material of research (Barnes 2003;Oliver 1992). ...
Little recent data is available about people with visual
impairments in France. This article presents the design process
of an online survey aimed at providing a portrait of the
life of the people with visual impairments, based on participatory
research. Questions were determined and refined
over several phases, including focus groups and a consensus
process using the Delphi method. A total of 49 people participated
in the project: people with visual impairments, relatives,
professionals and researchers. The participatory design
process resulted in a final survey that includes 191 questions
about various topics. The value and challenges of participatory
research are discussed. For example, the participatory
nature of the project and its reach encouraged participants
to stay involved even though the development process was
time consuming. The data collected with the survey will be
used to capture the diversity of people with visual impairments
in terms of (dis)ability, needs and resources.
... The study was conducted from the theoretical perspective of feminist disability studies -a field that articulates feminist studies with disability studies and considers disability as a category of analysis (Garland-Thomson, 2002) that has analytical and political potential for research, activism and public policies. Among the authors who supported the study, in addition to the theorists mentioned who have been working with the issue of care, we also highlight the dialogue with the feminist perspective of situated knowledge, proposed by Donna Haraway (1995), and the emancipatory research of Mike Oliver (1992). According to Oliver (1992), emancipatory research is a critical perspective of research in the field of disability which, in articulation with the social model, proposes a demystification of oppressive structures and processes, establishing a dialogue between the scientific community and people with disabilities, to enhance their participation and emancipation. ...
... Among the authors who supported the study, in addition to the theorists mentioned who have been working with the issue of care, we also highlight the dialogue with the feminist perspective of situated knowledge, proposed by Donna Haraway (1995), and the emancipatory research of Mike Oliver (1992). According to Oliver (1992), emancipatory research is a critical perspective of research in the field of disability which, in articulation with the social model, proposes a demystification of oppressive structures and processes, establishing a dialogue between the scientific community and people with disabilities, to enhance their participation and emancipation. Based on this approach, the researchers put their knowledge and skills at the service of people with disabilities, jointly constructing what the movements and subjects need in terms of research. ...
... As a qualitative study, it focused on the participants' perspective on their experiences and significations, situated in specific contexts (Gialdino, 2006). Based on dialogue with feminist disability studies (Garland-Thomson, 2002;Kittay, 1999;Fietz, 2021), emancipatory research (Oliver, 1992) and Haraway's (1995) feminist perspective of localized research, we consider the narratives obtained in the proposed research as located and connected with the many others, human and non-human, that mediate the constitution of the subjects. ...
In this study we investigated the perceptions of women with disabilities who experience complex dependence and need relationships of care to survive or "live more". The methodology involved exploratory qualitative research. This is an emancipatory feminist investigation, aligned with feminist disability studies. Based on the results we discuss the experience of complex dependence, the lack of a public policies for care, the reduction of social participation and, finally, the potential for interdependent relations between the interviewees and their caregivers.
... Historically, disability research has been conducted by nondisabled "experts, " aimed at "fixing" disabled people and forcing assimilation to nondisabled norms (Oliver, 1992). This paradigm was so invisible and unquestioned in inquiry that the idea of "conducting research with rather than on those with disabilities" was a "shocking revelation" as recently as the early 1990s (Pearson & Dickens, 2021). ...
... Supported by literature from scholars in DSE (see e.g. Collins, 2011;Snelgrove, 2005), critical qualitative researchers committed to humanizing research (Paris & Winn, 2014) and centering disabled bodyminds in emancipatory inquiry (Oliver, 1992;Pearson & Dickens, 2021), and arts-based educational researchers (ABER, Barone & Eisner, 2006;Dixon & Senior, 2009), I approached research as part of an ongoing process of relationship building wherein my own subjectivities would be surfaced and examined. ...
... I also highlighted opportunities and tensions of attempting to embrace disabled participants' agency towards transforming data generation methods. These included the potential to disrupt harmful power dynamics towards emancipatory research (Oliver, 1992) and tensions surrounding the nature of truth in an imaginative context, factors influencing participants' authentic self-representation, and power dynamics in qualitative research. CLAP offers a model for how drama-based contexts infused with creativity, flexibility, multimodality, and supportiveness might foster diverse, interdependent expressions of agency and prove valuable sites for research and learning with adults with intellectual disabilities. ...
The widespread myth that adults with intellectual disabilities lack agency still pervades learning and research spaces, justifying ableist teaching and research methods. Bringing critical, socio-cultural perspectives on disability together with Disability Justice principles, I present a joyful counter-narrative, illustrating how a group of adults with intellectual disabilities exercised agency in and through one drama-based learning and research context. Using data generated through participant observation, group interviews, and analysis of short films, I illustrate how characteristics of this drama-based context-creativity, flexibility, multimodality, and sup-portiveness-afforded disabled participants' interdependent agency. I explore tensions that arose during research regarding the nature of truthfulness , "good" storytelling, and systems of power. Results suggest an argument for the arts in learning and research with disabled participants, grounded not in their therapeutic benefit but in their capacity to afford agency, with implications for teachers and researchers looking to engage disabled participants in emancipatory work.
... We make this case by reflecting on ethical problems encountered when academics employed a 'traditional qualitative research' approach to understand how grassroots disabled activists in the UK were reacting to the new 'top-down' WeThe15 campaign. 1 We show how a 'spontaneous' shift towards a progressive 'emancipatory disability research' approach (Barnes 2002, Griffiths 2022b, Oliver 1992, were disabled activists had power and control in the production of knowledge, produced significant social impact and learnings. ...
... An emancipatory disability research paradigm concerns changing the power relations in research production from research done on disabled people towards research carried-out with or dictated by disabled people (Oliver 1992). However, it is just one of many participatory frameworks that claims to work with, not on, disabled people such as 'participatory action research', 'co-designed', 'coproduction', 'public and patient involvement', or 'user-centred design research'. ...
... For us, this means research that is led and controlled by disabled people with experience and expertise to advance the social and political emancipation of disabled people (Griffiths 2022b). According to Oliver (1992) and developed by Barnes (2002) and others (McColl et al. 2013, Pinto 2019, Stone and Priestley 1996, Zarb 1992 it is a dynamic and engaging process underpinned by core principles, such as: ...
... The Biomedical and Social Models of Disability Disability rights activists have argued, since at least the 1960's, that the biomedical model (which works in the interests of the medical system, healthcare professionals, social welfare workers, charitable fundraising organizations, and so on) is a necessarily limited way of understanding and managing disability. In fact, the biomedical model, in and of itself, they argue, has become intertwined with and part of the discrimination and oppression experienced by disabled individuals (Lane, 1998;Linton, 1998;Lupton, 1997;Oliver, 1992;Williams, 1998). ...
... Instead, people with disabilities have argued for a more social model of disability; one which shifts the obligation for change from the body and activities of the person with a disability to the built environment and social arrangements which are organized around norms of "able-bodiedness" (Barnes, 1998;Davis, 1998;Oliver, 1996;Shakespeare, 1998;Swain et. al., 1993). ...
... From the perspective of the social model of disability, exclusion and marginalization are not consequences of an individual's impairment. Rather, they are the consequences of social discrimination (Barnes, 1998;Davis, 1998;Finkelstein, 1998;Morris, 1992;Oliver, 1992Oliver, , 1996. Likewise, disability does not refer to bodily impairments and limitations, it is the naming of the experience of oppression (Linton, 1998). ...
... 1 Referring to collaborative research practices and related activities that support research engagement, translation and impact, co-creation encourages the alignment of researcher aims and priorities with those of service-users, practitioners and other end-users. 2,3 Co-creation is thus conceptualised as a dynamic, creative and collaborative approach to research that focuses on developing solutions to priority problems or issues. 4 The outcomes of co-creation range from individual to system-level innovations. ...
... Findings from these activities served as the starting point for the development of safe space models funded by government and government-funded organisations tasked with commissioning services that meet local needs. 15 Key components of safe spaces are: (1) a trauma-informed 'no wrong door' approach, (2) nonclinical support that meets the holistic needs of guests, (3) a compassionate and capable peer-led workforce, (4) a safe and accessible location, (5) a warm and welcoming environment, (6) warm connections and appropriate and reliable supports and (7) shared governance and management. 15 The development of safe and accessible nonclinical spaces where people can receive support from others who have survived their own experiences of suicidality marks a radical departure from mainstream medical approaches to suicide. ...
... 29 Central to this is 'a recognition of and confrontation with power', with the interests and needs of those being researched prioritised above those of researchers. 2 However, Pearce et al. 11 do not address the ethical and political aspects of co-creation, especially as they relate to the redistribution of power among stakeholders and calls for more contextualised forms of research within suicide research and prevention. 27,30 Indeed, we read their definition and operationalisation of rigour as one that employs experimental or quasi experimental design (e.g., randomised controlled trial; step-wedge design; multiple base design) as having a strong quantitative bias toward research that is systematised, uniform, replicable and 'value-free'. ...
Introduction
Numerous frameworks for defining and supporting co‐created research exist. The practicalities of designing and conducting co‐created research are clearly important, yet the utility of these frameworks and their operationalisation within local contexts and involving a diversity of stakeholders and interests are currently not well‐researched.
Methods
Using an instrumental case study approach, we examined the utility of a published systematic framework designed to improve clarity about co‐creation as a concept and approach. The framework is explored based on the first two processes that correspond to our own work to date: co‐ideation and co‐design.
Results
Our study showed that diverse stakeholders bring challenges regarding research priorities, methods, language and the distribution of power within co‐creation processes. Co‐creation activities were incremental, adaptable, responsive and made best use of established relationships, structures and collective leadership to meet the competing demands of funders and human research ethics committees, while ensuring the meaningful participation of multiple stakeholders.
Conclusion
The findings highlight the iterative, fluid and deeply relational nature of co‐created research. Rather than seeking to categorise these processes, we argue that the social relations of research production that provide the structures within which all co‐created knowledge is generated are more important drivers of effective knowledge mobilisation and implementation. Thus, close attention to these social relations is needed in co‐created research.
Patient or Public Contribution
People with lived experience of emotional distress and/or suicidal crisis, including academic researchers, service and peer workers, carers and advocates were involved in the co‐ideation and co‐design of this research. All authors identify as people with lived experience, from both academic and nonresearch backgrounds.
... Dentre os autores que embasaram o estudo, além das teóricas já citadas que vêm se debruçando sobre a temática do cuidado, destacam-se também o diálogo com a perspectiva feminista de pesquisa localizada (situated knowledge), proposta por Donna Haraway (1995), e a investigação emancipatória de Mike Oliver (1992). Segundo Oliver (1992), a investigação emancipatória é uma perspectiva crítica de pesquisa no campo da deficiência, na qual, em articulação ao modelo social, propõe uma desmistificação de estruturas e processos opressores, estabelecendo um diálogo entre a comunidade científica e as pessoas com deficiência, de modo a potencializar a participação e emancipação dessas últimas. A partir dessa abordagem, as(os) pesquisadoras(es) colocam seus conhecimentos e capacidades a serviço das pessoas com deficiência, construindo, em conjunto, o que os movimentos e sujeitos necessitam em termos de investigação. ...
... Nessa modalidade, há um enfoque na perspectiva dos participantes acerca de suas experiências e significações, situadas em contextos específicos (Gialdino, 2006). A partir do diálogo com os estudos feministas da deficiência (Garland-Thomson, 2002;Kittay, 1999;Fietz, 2021), a investigação emancipatória (Oliver, 1992) e com a perspectiva feminista de pesquisa localizada de Haraway (1995), consideramos as narrativas obtidas na pesquisa proposta como localizadas e conectadas com os muitos outros, humanos e não humanos, que medeiam a constituição dos sujeitos. ...
Resumo Neste estudo, investigamos sobre as percepções de mulheres com deficiência que experienciam a dependência complexa e necessitam das relações de cuidado para (sobre)viver. Adotamos como método a pesquisa qualitativa de cunho exploratório. Trata-se de uma investigação feminista emancipatória, alinhada aos Estudos Feministas da Deficiência. Nos resultados, discutimos sobre a experiência da dependência complexa, a falta de uma política pública do cuidado e a diminuição da participação social e, por fim, as potencialidades das relações de interdependência entre as entrevistadas e suas cuidadoras.
... A good deal of research has been accused of reinforcing unacceptable definitions and concepts of marginal groups, and limits the possibilities for challenging unwanted and stifling social polices and practices, and that new approaches are thus called for (e.g. Lather, 1986;Oliver, 1992;Maguire, 1996;Shakespeare, 1996;Humphries, 1997). ...
... or "mentally retarded" which position them as viable subjects for a particular research project (Oliver, 1992;Clough & Barton, 1995;Swain, 1995;Riddell, Wilkinson & Baron, 1998;Stalker, 1998). ...
The central topic of this investigation is power in community care accommodation for adults with learning difficulties. Specifically, it undertakes a qualitative psychological investigation into how people living in such accommodation experience power acting upon them, how they relate to themselves as subjects, and what problems they experience with these issues. In addressing these questions, the research draws upon the work of Michel Foucault. Crucially, Foucault (e.g. 1983, 1993), in his later life, understood his work as comprising three inter-related domains of critical enquiry – into truth, power and ethics. It is these three domains that are drawn upon in this research to examine how people talk about their situation. The research thus aims to build up a picture of how people living in care become objects of knowledge, how they are situated in specific power relationships in their homes, and how they understand their own identity and relate to themselves as subjects. This represents a much more detailed investigation into the situation of people living in community care than can be found in the existing literature, and in particular it moves beyond concerns for normalisation or quality of life.
The research proceeded through a qualitative discursive analysis of individual accounts of life in community care accommodation. Seventeen interviews were conducted with people who were living in such accommodation, or who had lived there previously. The aim of the interviews followed interpretative phenomenological analysis (IPA) (Smith, Jarman & Osborn, 1999) in attempting to explore and understand participants’ experiences of life in care. The accounts produced from the interviews were analysed using a combination of IPA and an adaptation of a post-structuralist approach to discourse analysis (Banister, Burman, Parker, Taylor & Tindall, 1994) based around Foucault’s three domains of critical inquiry.
Through these analyses, a number of themes (recurring topics in the interviews that related to the domains of analysis) emerged from participants’ accounts. The interviews showed, firstly, an awareness of processes of observation and assessment by a specific, usually only vaguely-referenced, group of people. There was a lack of understanding or detailed knowledge of these processes, but there was an awareness that they make available negative ways of thinking about people deemed to have learning difficulties and specific decisions and judgements about their care needs. Also, the interviews revealed a set of power relationships in which residents of the homes are conceptually divided from the staff. These power relationships are manifest in such things as residents having prohibitions and imperatives imposed on their conduct, being subject to the decisions of the staff, and being subject to reprimands and punishments for certain types of behaviour. What emerged from the analysis of participants’ discussion of these themes were areas of disagreement and resistance to their positions in power relationships. It was noted that participants were not passively positioned by power, but actively related to themselves as “liberal”, self-expressing and self-determining subjects. This self-relationship clashed with their position in differential power relationships, and created problems that they experienced with their lives in care and with their self-identity. The crucial findings, then, are that care residents’ lives are characterised by differential power relationships in which they occupy a subordinate “place” in their homes, and that they struggle with this position and experience problems with it in relation to their own self-understanding. The research thus demonstrates the importance of attending to individuals’ accounts of their own situation, producing a close reading of what they say, and placing this within the context of the breadth of Foucault’s work, and in particular, his work on ethics and self-relationships.
... Em consonância com o que foi proposto por Marivete Gesser et al. (2020), defendemos a necessidade de uma perspectiva emancipatória e anticapacitista da deficiência. Esta incorpora os princípios da investigação emancipatória propostos por Mike Oliver (1992), do pesquisar COM e não sobre as pessoas com deficiência (Moraes, 2010;2022), como também considera a interseccionalidade da deficiência com outros marcadores sociais da opressão tais como gênero, raça, sexualidade, classe social, idade e região. ...
... Junto dos ativismos e dos movimentos sociais, destacamos a necessidade de incorporarmos a investigação emancipatória nas pesquisas nos estudos da deficiência. Mike Oliver (1992) destaca que essa, contrapondo-se ao processo histórico que situa a deficiência como um problema individual, considera-a como uma questão política de direitos humanos e luta. Em consonância com essa definição, nossos estudos têm apontado a importância de se produzir conhecimentos e práticas com as pessoas com deficiência e não sobre elas (Moraes, 2010(Moraes, , 2022. ...
O objetivo deste artigo é definir as ofensivas capacitistas que reiteram o capacitismo historicamente vivenciado pelas pessoas com deficiência e ameaçam os direitos por elas conquistados. Afirmamos que há relações entre o capacitismo, a eugenia, e as políticas neoliberais e que essas relações constituem as ofensivas capacitistas. Apresentamos algumas materialidades das ofensivas capacitistas referentes aos ataques ocorridos no período entre 2019 e 2022 aos direitos conquistados pelas pessoas com deficiência. Em seguida, contextualizaremos brevemente as ofensivas antigênero, estabelecendo relações entre elas e as ofensivas capacitistas. Na sequência, abordamos a questão da eugenia, que tem sido um importante pilar tanto das ofensivas capacitistas como das ofensivas antigênero. Integrando os tópicos anteriores, conceituamos as ofensivas capacitistas e suas relações com o neoliberalismo e com o medo de um planeta aleijado. Encerramos com alguns pressupostos ético-políticos para o fortalecimento da luta anticapacitista pelo ativismo defiça na direção da construção de um planeta aleijado.
... In this context, one of the most influential models is the "emancipatory" framework (Barnes, 2003;Stone and Priestly, 1996). This framework is comprised of a set of principles and practices which include: the researcher surrendering claims to objectivity in favour of an overt political orientation towards improving the lives of disabled people; the use of the social model of disability as the underpinning theoretical foundation; and control and accountability being deferred to disabled people (Stone and Priestly, 1996). 1 Underpinning this framework is the principle of "no participation without representation" (Kichen, 2000;Oliver, 1992) or, "nothing about us without us". Disabled people's refusal to participate in research which is not representative of their experiences and interests draws further attention to the inherently political nature of research. ...
... Historically, research purporting to be about disabled people has been dominated by ablebodied researchers (Kichen, 2000). Research has been experienced as exploitative, oppressive and unrepresentative, and many disabled people are suspicious of ablebodied researchers (Barnes, 2003;Kichen, 2000;Oliver, 1992). As such, the ethics and politics of disability research are "heightened for non-disabled researchers" (Stone and Priestly, 1996: 699). ...
... Various approaches and models for conducting research in the field of disabilities have been developed over the past three decades, involving persons with disabilities as coresearchers at various levels. These approaches began to be documented at the beginning of the 1990s (Oliver, 1992). Inclusive research and various models for active participatory research are the products of changes in the self -perception of persons with disabilities. ...
This article sought to examine the strengths and challenges in the use of inclusive research with persons with disabilities in general, and persons with low intelligence in particular, while presenting the working model for the inclusive research approach that was initiated and developed at Beit Issie Shapiro during the past two decades.
Published by: Knowledge Database Beit Issie Shapiro https://did.li/ggbx5
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This guide is a translation of an original article published in "Shikum", October 2020, (Issue 30), the journal of "Homesh"- the union of social workers in rehabilitation in Israel, with permission of the editor.
... Tis two-phase interview approach was designed to ensure research participants were partners in identifying the meanings of the experiences reported and analyzed by the primary investigator. Tis process helped rebalance the power relationships between researcher, and participants and avoid replicating the power hierarchies that permeate mainstream disability research [37,38]. ...
Background. One in 5 people in the United States live with disability; however, the public health needs of this community have been largely overlooked. Although U.S. law mandates the availability of accessible medical exam equipment, people with mobility disabilities (PWMD) frequently encounter barriers that require self-advocacy to receive basic primary care. Objective. The purpose of this study was to qualitatively explore the impact of healthcare access barriers—specifically, the experiences of the need to self-advocate and factors that inform decisions to make accommodation requests—for PWMD. Methods. Qualitative semistructured interviews were performed across two phases of data collection with each of the 6 participants. Interpretative phenomenological analysis was used to highlight the essence of participants’ experiences in making decisions to request healthcare accommodation. Results. Participants included a purposive sample of self-advocates with physical disabilities (3 men and 3 women). While individual approaches to self-advocacy varied, participants identified a process of “recognizing the normalization of disability discrimination and disability stigma” which necessitates the development of “agency in self-advocacy.” This process has a lasting impact on people that includes a shared embodied experience of disability, as well as a sense of empowerment based on their collective and individual identities. Conclusions. Findings have implications for supporting individual disability consumer advocacy efforts as well as the need to address the normalization of disability discrimination within healthcare systems levels.
... The role of the non-disabled researcher within disability studies has been debated by disabled scholars and activists, and while some continue to be suspicious of non-disabled people researching in the field of disability (Stone and Priestley, 1996), others have highlighted important contributions of non-disabled researchers (Shakespeare, 2006). Furthermore, disabled scholars and nondisabled scholars (Barton, 2005;Morris, 1992;Oliver, 1992) have maintained the importance of non-disabled researchers using their positions to interrogate existing power structures, focusing on and problematizing ableist structures and the prejudices ingrained in social relationships and structures alike, arguing that such a focus is imperative in emancipatory research. By drawing on a transformative framework (Creswell, 2014;Mertens, Sullivan and Stace, 2011), and directing the focus on the complex interplay of structures and processes that foster violence against disabled women, my aim has been to contribute to knowledge that can be used to challenge underlying conditions that maintain marginalization and power disparities and will aid in the actions to eliminate this violence. ...
This study explores violence against disabled women in Iceland. The aim of the project was twofold: to collect information about the prevalence of violence against disabled women and to investigate the relationship between disabled women’s marginalised and subordinate position and the violence they face. The project is grounded on standpoint epistemology, it takes an intersectional approach and uses the theoretical lenses of feminist and critical disability studies. Using data on prevalence of violence from a nationally representative sample of
the Icelandic population, the study employs between-group comparisons and an intersectional approach to understand the effects of inhabiting multiple marginalised social categories and how that intersects, with regard to precarity to violence. The main results demonstrate that disabled women are at increased risk
of sexual, physical and emotional violence when compared to their non-disabled counterparts. Logistic regression showed higher odds of violence associated with sexuality and perceived financial strain, reflecting how the risk of violence is connected to the different social locations individuals inhabit and how precarity and exposure to violence increases for women who are multiply marginalised.
The results provide insight into how precarity to violence is perpetuated by social inequalities and illustrates the importance of an intersectional approach by embedding violence against disabled women in a broader social setting. The study has important implications for policy and implementation of antiviolence plans in Iceland and elsewhere.
... Incorporating the concepts discussed in participatory action research and social justice youth development, British social action is values-based and carried out with groups, challenging unequal power relations, while creating opportunities for improving conditions in the environment, and changing systems. Social action is a philosophy and theory for social change based on the work of Paolo Freire, (1970), the tenets of popular education, and infl uenced in the United Kingdom by the disability movement, black activists, and the women's movement (Castelloe & Watson, 1999;Dominelli & McCleod, 1989;Evans, 1994;Oliver, 1992). Like participatory action research, and social justice youth development, it is carried out with groups who are experiencing an issue and generating the solutions (Breton, 1995;Fleming & Ward, 1999). ...
This article presents a case study, and puts forth an approach to social justice work with young people, that impacts youth development, empathy, and social change by applying two social work models, Self-directed groupwork, and its model for stages of group development, along with concepts of expressive and instrumental social roles in groups.The personal growth for the youth was demonstrated by their increased confidence, greater academic interest, and more positive perceptions by teachers. Socially they exhibited heightened understanding of others, communication skills, and teamwork. The result for the community was seen in the social change skills they acquired and the project they implemented.
... Prompted by the independent living movement, the people's first movement, and solidified by the United Nations' Convention on the Rights of Persons with Disabilities (CRPD), there is growing recognition of the importance and the rights of persons with disabilities to be included as active agents in research (e.g., Nind 2017; Nind and Vinha 2014;Walmsley and Johnson 2003). In fact, since the 1990s, scholars involved in disability research have argued for research informed by an emancipatory paradigm (e.g., Barnes and Mercer 1997;Oliver 1992). This is in response to research that was performed "on", "to", or "about" disabled people without them (O'Brien 2022). ...
Informed by critical disability studies and disability justice, this article describes the reflections of two university researchers co-researching with self-advocates (individuals with intellectual disability), theatre artists, researchers, and a community living society to create social justice disability theatre as critical participatory research (CPAR), demonstrating how disability theatre can contribute to and advance inclusive research practice. Disability justice-informed theatre as CPAR has direct relevance to people with intellectual disabilities; offers a platform where self-advocates’ diverse ways to communicate and be in the world are honoured and taken up as resources to the research and community; and can generate mentorship opportunities for self-advocates to learn, practice, and develop research skills. Significances include showing how the theatre creation process (devising, developing, and refining scenes) is research in itself and how tensions are recognized as sites of possibility. Future research should explore how increasing pathways to communication, co-creation of KT strategies, and protocols for power sharing and problem solving within disability theatre as CPAR impact the roles, outcomes, and experiences of disabled and non-disabled researchers and audience members.
... In Academic Ableism, Dolmage (2017) describes how the very foundations of academia are based on ideals founded in eugenics and the segregation and academic exclusion of disabled people, Indigenous people, and racialized people. In academia, disabled people and disability have been more often the subjects of study, rather than the actors in research and teaching (Dolmage, 2017;Oliver, 1992;Snyder & Mitchell, 2010). Ableism is encoded within standards of productivity and performance of the ideal academic (Evans et al., 2017;Waterfield et al., 2018). ...
Belonging has significant impacts on success in postsecondary. Blind people are underrepresented in postsecondary and lack equitable opportunities to develop a sense of belonging. To build a better understanding of this underrepresented experience, this study shares narratives of 28 Blind students from across Turtle Island (and what is colonially called Canada) using Teng et al.’s (2020) Belonging in Academia Model (BAM) as a conceptual framework. Thematically analyzed findings suggest that blind students’ perspectives offer nuance to the BAM’s conceptualization of how belonging develops. For blind students, external factors such as class size are especially important in determining affiliation with an institution. Blind students elucidated the importance of familiarity with different ways of being in the world, including blindness. Third, acceptance involved having their blind embraced in postsecondary contexts. Forth, interdependence was key to building trusting connections for blind students. Fifth, blind participants discussed equity at length related to access, the added work of trying to obtain access, and the emotional work involved. This study helps fill a gap regarding the experiences of these traditionally underrepresented postsecondary students in Canada. The BAM may raise the consciousness of stakeholders in considering the unique factors impacting belonging for blind people. By attending to these perspectives, stakeholders can become more responsive to the experiences of people from equity-deserving groups. Understanding facilitators and barriers to belonging could result in culturally safer practices and inclusive pedagogical practices and system policies. Only when we create a space where everyone can belong will higher education be truly inclusive.
... People with intellectual disabilities have historically been underrepresented in conducting research as researchers (Fulton et al. 2021;Harrison et al. 2021;Zarb 1992). Additionally, research methods have traditionally been developed and implemented in inaccessible ways that prevented people with intellectual disabilities from being researchers and instead were only researched (Oliver 1992;Nind et al. 2016). Disability studies scholars and activists with and without disabilities have advocated for people with intellectual disabilities to have a voice in the ways their experiences are collected, analyzed, interpreted, and represented (Bourke 2009;Goodley 2018;Zarb 1992). ...
The development and practice of inclusive research with people with intellectual disabilities is complex, revealing challenges and lessons that inform innovative and novel methodological approaches. In Africa, inclusive research still lags for various reasons. First, due to societal misconceptions that portray people with intellectual disabilities as unable to self-advocate or as lacking agency and self-determination; second, due to a lack of trained researchers and ethics committees on inclusive research practices. This paper critically reflects on and discusses the strategies and methods used to conduct an inclusive research study in Kenya. The focus was on the methodological approach of including people with intellectual disabilities as researchers in Kenya. Two people with intellectual disabilities were trained as research assistants. This paper describes the experiences with Institutional Review Boards, the processes and experiences while training this research assistants using a UK-developed curriculum, and fieldwork experiences while piloting interview guides, conducting interviews, and conducting focus groups with this research assistants. This study findings indicate the need to culturally adapt co-researcher training, the importance of working with support personnel who empower researchers with intellectual disabilities, and the need for greater advocacy to change negative attitudes towards people with intellectual disabilities that hinder their participation in research.
... There is an important debate about the production of engaged or emancipatory research in the context of disability (OLIVER, 1992). Key authors in the field demonstrate how it is necessary to give voice to people with disabilities and, at the same time, produce answers that aim at transforming the reality in which these subjects are situated. ...
In Brazil, the population with disabilities was estimated at 18.6 million, which corresponds to 8.9% of the population in the age group studied in the last Census (2022). The crisis caused by the Covid-19 pandemic has affected different groups in society differently, and people with disabilities are among those with the most severe consequences. In the text, we will address the process of making the documentary Pandora, authored by the first author of this article. The film brings to life the stories and experiences of people with disabilities from different parts of Brazil during the Covid-19 pandemic. Throughout the article, we describe the paths that enabled the union between scientific research and documentary cinema as an instrument to support the protagonism of social groups inserted in research processes, in this case, people with disabilities, as well as to expand the range of possibilities and languages for the dissemination of knowledge produced in academia. No Brasil, foi estimada em 18,6 milhões a população com deficiência, o que corresponde a 8,9% da população na faixa etária estudada no último Censo (2022). A crise provocada pela Pandemia da Covid-19 afetou de maneira distinta os diferentes grupos na sociedade e as pessoas com deficiência figuram entre aquelas com consequências mais severas. No texto, abordaremos o processo de elaboração do documentário Pandora, de autoria do primeiro autor deste artigo. O filme traz à cena histórias e experiências de pessoas com deficiência de diferentes partes do Brasil durante a Pandemia da Covid-19. Ao longo do artigo, descrevemos os caminhos que possibilitaram a união entre pesquisa científica e cinema documental como instrumento para apoiar no protagonismo dos grupos sociais inseridos em processos de pesquisa, neste caso, pessoas com deficiência, bem como para ampliar o leque de possibilidades e linguagens de divulgação do saber produzido na academia.
... inklusiven Forschung (Walmsley & Johnson, 2003) hat sich im angloamerikanischen Raum seit Anfang der 1990er Jahre (vgl. Oliver, 1992) etabliert. Dieser baut auf Traditionslinien der qualitativen Sozialforschung im Bereich von Menschen mit einer Behinderung auf und wird zentral durch das Empowermentkonzept sowie die Selbstbestimmt-Leben-Bewegung befördert (Chappell, 2000;Wüllenweber, 2006). ...
Der vorliegende Artikel basiert auf den Ergebnissen
einer Zeitschriftenanalyse, welche von Oktober 2006 bis
August 2007 an der Forschungseinheit Heilpädagogik
und Integrative Pädagogik der Universität Wien durch-
geführt wurde. Ausgehend von durchaus als kritisch an-
zusehenden Bestandaufnahmen empirischer sonder- und
heilpädagogischer Forschung (vgl. Klauer, 2000; Schlee
2001) sowie einer Diskussion im Rahmen eines partizi-
pativen Methodenworkshops wurde in dieser Untersu-
chung der Fokus nicht nur auf eine rein thematisch-inhalt-
liche Perspektive gerichtet, sondern schloss eine Analyse
der methodischen Ausrichtung sowie der in den Studien
eingenommenen Blickwinkel mit ein. Zu diesem Zweck
wurde ein eigenes Kategorienraster entwickelt, mit des-
sen Hilfe eine Vollerhebung aller Artikel, die einen fest-
gesetzten Mindeststandard erfüllen, (N = 3012) aus 11
sonder- und heilpädagogischen Journals der Jahrgänge
1996–2006 durchgeführt wurde. Zielsetzung war es da-
bei, anhand der Ergebnisse Aussagen über die sonderpäd-
agogische Forschung des gesamten deutschsprachigen
Raums der letzten zehn Jahre treffen zu können. Damit
stellt das Forschungsvorhaben in dieser Anlage ein No-
vum in der deutschsprachigen sonderpädagogischen Land-
schaft dar.
... Our engagement with disabled people recognised and was deeply sensitive to the ongoing epistemic and political contestations that frame 'care' in the context of disability, as well as critiques of processes and social relations of research production within the disability arena. These have emanated from a prior history of potentially exploitative research relationships between (non-disabled) researchers and disabled people as research 'subjects' which have done little to improve the lives of disabled people (Oliver, 1992). In working with this group, we recognised the need to create and prioritise 'a 'discourses bridge' between feminist and disability perspectives on care' (Hughes et al. 2005:271;McLaughlin 2020). ...
This report presents findings from a three year (2020-23), interdisciplinary,
participatory research project entitled CareVisions, based in the Institute for
Social Science in the 21st Century (ISS21) at University College Cork, which
explored care experiences during and beyond the COVID-19 pandemic to
re-imagine future care relations, practices, and policies in Ireland and internationally.
Core to the project is a recognition that we need to rethink how we
conceptualise the term care itself. The project aims to advance knowledge
about the meaning of care in people’s lives and stimulate critical public debate
about how we can envision alternative care futures.
... Uma das principais proposições empreendidas por esses intelectuais engajados, como observa Colin Barnes (2003) a respeito do contexto britânico, esteve dirigira à denúncia das múltiplas formas de opressão que acometem as pessoas com deficiência. Tais análises levaram ao desenvolvimento de modelos emancipatórios de investigação que promovessem formas de empoderamento e engendrassem políticas de acessibilidade e inclusão social (Oliver, 1992). Os desdobramentos desse processo favoreceram a configuração de uma nova atmosfera intelectual a partir da qual a deficiência pôde ser compreendida como um fenômeno complexo que articula conhecimentos produzidos tanto pelas biociências quanto pelas teorias sociais. ...
Resumo Qual seria o lugar dos estudos da deficiência na prática científica contemporânea? Em que medida a circulação de investigações que questionam ontologias capacitistas e posicionam a deficiência como um marcador social relevante para a compreensão das diferentes formas de apagamento e de opressão social estaria influenciando o desenvolvimento de novas agendas de pesquisa? A partir de um mapeamento de 2.864 documentos registrados nas bases de dados Scopus e Web of Science entre os anos de 1956 e 2020, este artigo procura descrever as tendências gerais de produção e a estrutura intelectual dos estudos da deficiência ao longo das últimas sete décadas. A intenção é oferecer um mapa atualizado dos principais periódicos, autores e autoras, repertórios teóricos, enfoques heurísticos e sujeitos políticos que disputam visibilidade e legitimidade no cenário internacional da produção de conhecimentos a respeito da deficiência. Os resultados desta investigação sugerem que a deficiência é uma categoria plural e em construção nos meios científicos especializados; simultaneamente analítica e política, ela se organiza em torno de múltiplas áreas que participam da coprodução de distintos modelos de interpretação e de construção das vidas das pessoas com deficiência.
... Düvell has decided to engage in advocacy in his capacity as a member of NGOs rather than as an academic. More generally, Oliver (1992) suggests that the relationship of researchers and the researched could be one of mutual respect, partnership and mutual advantage. ...
p>This paper is concerned with the ethical issues arising for researchers engaged in the study of irregular migration. Based on the authors' research experiences, the paper goes beyond analysis of ethical dilemmas and aims to provide some guidance to researchers in this field. Irregular migration is by definition an elusive phenomenon as it takes place in violation of the law and at the margins of society. The very nature of this phenomenon raises important issues, including the sensitivity and vulnerability of the research subjects and a whole series of other ethical issues to be addressed both when conducting fieldwork with irregular migrants and also at the later stage of data analysis, processing and dissemination. The paper first considers various methods in researching irregular migration and defines research ethics. It then discusses the differences between sensitivity and vulnerability and their particular implications for irregular migration research. Next, the paper looks at the ethical challenges arising from fieldwork and discusses the sensitive issues involved in the relationship between researcher, irregular migrant and society. Finally, it discusses the question of disseminating findings (both qualitative and quantitative) to wider audiences. In conclusion, we highlight the key points that we consider to be important when studying irregular migrant populations.</p
... En el ámbito de los Estudios de Discapacidad este asunto está muy desarrollado bajo el epígrafe de la denominada Investigación Emancipatoria que está comprometida con conseguir una presencia más real, más genuina de las personas con discapacidad en los procesos de investigación. Mike Oliver defendió este modelo de investigación argumentando que "Las personas con discapacidad han empezado a ver la investigación como una violación de su experiencia, como algo irrelevante para sus necesidades y como un fracaso para la mejora de sus circunstancias de vida materiales y para su calidad de vida" (Oliver, 1992). Esto hace que la investigación emancipatoria se plantee como una alternativa radical a la investigación positivista clásica y se encuentre comprometida con el cambio social, con la mejora de las condiciones de vida de las personas con discapacidad y con el "empowerment". ...
Este artículo propone varias reflexiones de carácter epistemológico sobre la investigación inclusiva que se derivan principalmente de la experiencia acumulada por las autoras en varias investigaciones desarrolladas en los últimos años. Los debates que se plantean en el texto tratan de poner de manifiesto algunas dificultades que es necesario resolver en el camino de la construcción de un conocimiento que pretendemos que sea inclusivo. En particular, se exponen dos grandes ejes argumentales. Por una parte se analizan los debates relacionados con los significados posibles de la inclusión y la exclusión educativa como objeto de estudio y por otra parte se presentan algunos dilemas metodológicos que es preciso enfrentar en la investigación inclusiva. Todo ello se organiza bajo la premisa de que nuestras elecciones en el proceso investigador no son indiferentes o libres de valores, sino que se encuentran inevitablemente comprometidas con la construcción de determinados discursos sobre los sujetos investigados.
... A perspectiva emancipatória da deficiência tem como característica a realização de pesquisas e práticas profissionais com as pessoas com deficiência. Oliver (1992), precursor dessa perspectiva, destaca que o paradigma emancipatório situa a deficiência como uma questão política, de direitos humanos e de luta, contrapondo-se ao processo histórico que entende a deficiência como um problema individual, restrito a um corpo com lesão. Com base nessas premissas, o autor contesta as pesquisas que estudam a deficiência a partir das supostas limitações corporais do sujeito, ressaltando a relevância de que essas sejam analisadas a partir das barreiras que impedem a sua participação social, de modo que os resultados obtidos sejam socialmente relevantes para a vida dos membros desse grupo social. ...
Resumo O objetivo deste artigo é relatar o trabalho realizado pelo Núcleo de Estudos sobre Deficiência da UFSC, um dos vencedores, com menção honrosa, da primeira edição do Prêmio Marcus Matraga da ULAPSI, para a politização da deficiência e o fomento das lutas anticapacitistas. A partir do embasamento teórico dos estudos da deficiência de matriz feminista e da teoria aleijada, foram desenvolvidas atividades formativas (grupo de estudos, eventos científicos e palestras); produção de materiais orientado-res; e articulação com redes de pesquisa nacionais e internacionais. O trabalho realizado contribuiu para difundir a compreensão interseccional da deficiência e do capacitismo; capilarizar os estudos da deficiência para diversas áreas do conhecimento; situar as lutas anticapacitistas como sendo de todas as pessoas; e promover a ressignificação da experiência da deficiência. Por fim, mostramos a potência da difusão dos estudos da deficiência para as pessoas com deficiência como subversiva às narrativas capacitistas e eminentemente emancipatória. Palavras-chave: estudos da deficiência; capacitismo; direitos humanos; emancipação social. Politicizing disability, producing crip thought in the Global South Abstract This paper aims to report the work carried out at the Center for Disability Studies at UFSC, awarded with the first edition of the Marcus Matraga Award from ULAPSI, for the politicization of disability and the promotion of anti-ableist struggles. To this end, based on the theoretical foundation of the disability studies in a feminist perspective and on the crip theory, training activities were developed (study groups, scientific events, and lectures); production of guidance materials; and articulation with national and international research networks. The work carried out has contributed to spreading the intersectional understanding of disability and ableism; to spread Disability Studies to different areas of knowledge; to situate the anti-ableist struggles as belonging to all people and promoting the redefinition of the experience of disability. Finally, the work showed the power of diffusing disability studies for people with disabilities as subversive to ableist narratives and eminently emancipatory. Politizar la discapacidad, produciendo lisiamientos desde el Sur Global Resumen El propósito de este artículo es informar sobre la labor desarrollada por el Centro de Estudios de la Discapacidad de la UFSC, uno de los ganadores, con mención honorífica, de la primera edición del Premio Marcus Matraga de la ULAPSI, por la politiza-ción de la discapacidad y la promoción de las luchas anticapacitistas. A partir del fundamento teórico de los estudios de la matriz feminista de la discapacidad y la teoría tullida, se desarrollaron actividades formativas (grupos de estudio, eventos científicos y conferencias); producción de material guía; y articulación con redes de investigación nacionales e internacionales. El trabajo realizado ha contribuido a difundir la comprensión interseccional de la discapacidad y el capacitismo; difundir los estudios de la discapacidad a diferentes campos del conocimiento; situar las luchas anticapacitistas como pertenecientes a todas las perso-nas; y promover la resignificación de la experiencia de la discapacidad. Finalmente, mostramos la potencia de la difusión de los estudios de la discapacidad para personas con discapacidad como subversivos a las narrativas capacitistas y eminentemente emancipadores. Palabras clave: estudios de la discapacidad; capacitismo; derechos humanos; emancipación social.
... The question of research Conducting research that ultimately serves to eradicate social ostracizing has been one of the major objectives of disability activism since the inception of disability studies. The main contention presently is the validity of the idea of emancipatory research, which builds upon UPIAS ideals and was petitioned by Oliver (1992), a key founder of the field, in response to antiquated means of conducting research that did not sit well with the agenda of disability studies. Although emancipatory research, commissioned and controlled by persons with disabilities and their organizations (Department of Human Services [DHS], 1992), has forever altered disability policies by focusing on finding and eradicating social barriers (Barnes, 2012), Watson (2010Watson ( , 2012, a second key figure in disability studies, rightly contends that it has failed to in reality emancipate people with disabilities. ...
... A perspectiva emancipatória da deficiência tem como característica a realização de pesquisas e práticas profissionais com as pessoas com deficiência. Oliver (1992), precursor dessa perspectiva, destaca que o paradigma emancipatório situa a deficiência como uma questão política, de direitos humanos e de luta, contrapondo-se ao processo histórico que entende a deficiência como um problema individual, restrito a um corpo com lesão. Com base nessas premissas, o autor contesta as pesquisas que estudam a deficiência a partir das supostas limitações corporais do sujeito, ressaltando a relevância de que essas sejam analisadas a partir das barreiras que impedem a sua participação social, de modo que os resultados obtidos sejam socialmente relevantes para a vida dos membros desse grupo social. ...
This paper aims to report the work carried out at the Center for Disability Studies at UFSC, awarded with the first edition of the Marcus Matraga Award from ULAPSI, for the politicization of disability and the promotion of anti-ableist struggles. To this end, based on the theoretical foundation of the disability studies in a feminist perspective and on the crip theory, training activities were developed (study groups, scientific events, and lectures); production of guidance materials; and articulation with national and international research networks. The work carried out has contributed to spreading the intersectional understanding of disability and ableism; to spread Disability Studies to different areas of knowledge; to situate the anti-ableist struggles as belonging to all people and promoting the redefinition of the experience of disability. Finally, the work showed the power of diffusing disability studies for people with disabilities as subversive to ableist narratives and eminently emancipatory.
... Instead he promoted the social model of disability, which recognises the disabling influence of the physical and social environment (Oliver, 1990). As a physically disabled researcher, Oliver also advocated for a change to the social relations of research activities, putting disabled people front and centre in the knowledge production and change creation processes (Oliver, 1992). Oliver controversially invoked the image of disability researchers as "parasites" where their research failed to serve the interests of disabled people (Oliver, 1999). ...
... To implement these postulations, participatory research was considered a suitable approach: It seeks the active and comprehensive involvement of participants (Small, 1995), thereby attempting equalisation of power imbalances in research production. Emancipatory research, committed to empower disabled participants by handing over control, would require a reversion of these relationships (Oliver, 1992). ...
Background
Disability is often an essentialised and oversimplified concept. We propose refining this while incorporating the multidimensional nature of disability by increasing the use of existing survey questions and their corresponding data to enrich, broaden and inform understandings of disability.
Methods
We combined patient and public involvement and engagement (PPIE) with focus groups and concept mapping to collaboratively map disability survey questions into conceptual models of disability with six members of the public with lived experiences of disability.
Results
Using reflexive thematic analysis, we identified three qualitative themes and eight subthemes through a series of four PPIE activities: (1) understanding concepts of disability based on individual experience, subthemes: 1.1—preference for the biopsychosocial model, 1.2—‘Reviewing’ instead of mapping survey questions and 1.3—comparing questions to real life; (2) consistency between understanding needs and implementing adjustments, subthemes: 2.1—connecting preparation and operation, 2.2—inclusivity and adjustments in activities and 2.3—feedback for improving activities and (3) real‐world applications—targeted awareness raising, subthemes: 3.1—who, where, what and how to share activity findings and results, 3.2—sharing with human resource and equality, diversity and inclusion professionals.
Conclusion
Members of the public who collaborated in these activities felt empowered, engaged and supported throughout this study. This approach offers a model for other researchers to cede power to the public over the research aspects typically reserved for researchers.
Patient or Public Contribution
We involved members of the public with lived experience throughout this study—co‐design, co‐facilitation, collaboratively mapping the disability or disability‐related survey questions into conceptual models of disability, evaluation of the activities, co‐analysis and co‐authorship.
Background
To build capacity among people with intellectual and developmental disabilities to become co‐researchers they need the opportunity to learn about research.
Method
An inclusive research team developed an online training to support people with intellectual and developmental disabilities to serve as co‐researchers. Seven participants were recruited as pilot trainees. The co‐researcher training consisted of two 1‐h training sessions. Pre‐ and post‐surveys and a focus group were conducted to examine participant experiences with the co‐researcher training.
Results
The participants were actively engaged during the co‐researcher training sessions and shared they had a positive experience with it. They expressed that people with intellectual and developmental disabilities add value to the research team because of their lived experiences.
Conclusion
The co‐researcher training can instill a baseline level of knowledge about research in people with intellectual and developmental disabilities, and can be adjusted for different types of research in different settings and organisations.
Lay summary
People with intellectual and developmental disabilities would like to learn more about research. They would also like to learn more about how to do research. People with intellectual and developmental disabilities who work on research are called co‐researchers. Two researchers and a co‐researcher with disability wrote together about research for people with intellectual and developmental disabilities. Seven people with intellectual and developmental disabilities took part in the class. They answered questions about how they liked the class. They also gave their opinion about research. They learned about what research is and how to do research. The class can be changed so that it can be used by other organizations.
This paper discusses the theoretical roots of social action in the work of Brazilian adult educator Paulo Freire, who proposes an alternative to conventional educational methods, based on the concept of problem posing education, which entails mutual learning and dialogue between students and teachers. For Freire, the notion of dialogue is based upon the principles of equality and critical thinking, which enables oppressed people to challenge their existing circumstances. The eclectic sources of Freirean philosophy and the challenges of other writers to aspects of his thought are examined. The paper describes how members of the Centre for Social Action have translated the theories of Freire and other writers into a set of principles and the social action process, which have been used as the basis of work in the community with a wide range of disempowered groups.
En 2014, la direction nationale de l’Association des Paralysés de France a marqué son intention de développer l’accès aux activités physiques et sportives (APS) pour les personnes dites handicapées. Dans cette association visant l’« autodétermination » (Wehmeyer & Sands, 1996) , cet objectif apparaît paradoxal dans la mesure où il n’a pas été revendiqué en tant que tel par les adhérents et usagers. Cet article vise alors à éclairer les tensions entre une volonté de développer une offre d’activités d’une part et l’intention de respecter l’autodétermination des personnes dites handicapées d’autre part. À partir d’une observation participante réalisée sur trois années, nous montrons que si les salariés et bénévoles s’efforcent d’introduire un degré d’autodétermination dans le développement des APS, ils se trouvent rapidement confrontés à des limites les conduisant à contrôler, parfois malgré eux, l’organisation de ces activités. Nous interprétons ces tensions comme une impossibilité, pour les acteurs associatifs (dirigeants, accompagnants salariés et bénévoles), d’assurer l’autodétermination des personnes dites handicapées lorsqu’elle n’est pas posée dès le départ comme démarche incontournable dans le développement des APS.
This article presents a review of published articles on Transformative Service Research (TSR), incorporating insights from user-led research to further understand how collaboration within the TSR process can improve wellbeing. Our analysis of 111 articles reveals mixed approaches to the way user collaboration has been documented, with only a small number of articles reporting extensive collaboration across every stage of the TSR process. We posit that this has led to missed opportunities for more effective TSR and make two significant contributions to the development of subsequent TSR. First, by highlighting inconsistencies in the TSR research process, we elucidate the need for the reflexive application of TSR knowledge and open dialogue on embedding collaboration within the research process itself. Second, we propose five avenues for progress to enhance the potential for future TSR to uplift service provision for service users and stakeholders.
Platform media are changing the disability charity landscape. This paper employs a hybrid critical disability studies – platform media studies lens to explore the SickKids VS campaign, aiming to ‘fight’ childhood illness and disability. Employing a social media thematic analysis, we analyzed social media content distributed through the campaign, consisting of images, videos, and captions ( n=620). We found three dominant narratives: heroic sick kids, crumbling infrastructure, and informational content. Each trend, we argue, emerges within a changing platform mediascape, whereby charitable audiences must be cultivated and curated over a long-term process, rather than in a single moment, as in telethon fundraising. We ask how disability is framed in each of those narratives, and how disability studies might respond to these formulations in the political economy of platform media. We end by exploring the strategies disability studies can take to combat the marginalizing effects of such charitable campaigns.
Insider research poses a range of benefits and challenges for researchers and the communities being researched. It is commonly advocated for disability research but there is limited work exploring disabled researchers’ experiences. Influenced by autoethnography and through a process of asynchronous structured conversations, we reflected on our experiences as two blind researchers. Through our collective reflective process and analysis, we created three main themes: insider research is complex and subjective, there is judgment about the “right” thing to do, and insider research requires “different” work. We argue that insiderness is more than sharing characteristics: it is a situated, fluctuating, and “felt” experience. The complexities, judgments, and emotional labor associated with insider research can challenge researchers in potentially very personal and unexpected ways. We propose that further investigation is required about how researchers can best prepare for, engage ethically throughout, and be supported through the insider research process.
A lack of diversity exists in couples research with an overrepresentation of white, middle to upper income couples. Additionally, researchers often do not reflect the study sample, particularly when studying underrepresented minority and historically marginalized (URM-HM) populations. Emancipatory research practices focus on language, processes, and practices to ensure that researchers and the research they conduct honor and contribute to the empowerment of the URM-HM research participants. Therefore, in this paper, we discuss five critical considerations with recommendations for emancipatory research practices for including couples from URM-HM populations. The aim is to provide a framework for researchers to critically reflect on their work with URM-HM populations. The research practices include: (a) research positionality and reflexivity; (b) understanding of the population being served; (c) power and empowerment; (d) accountability, voice, and participant engagement; and (e) research that benefits URM-HM populations and challenges the systems that perpetuate inequities. Additionally, we present practical strategies to implement these five considerations based on our own experiences conducting community-effectiveness studies with low-income and diverse couples.
Objectives
The quality of parenting arguably determines the quality of life that a child will live in the future. Although both mothers and fathers are expected to contribute toward raising their children, in the cultural context of sub-Saharan Africa, mothers automatically become the primary caregivers and managers of domestic affairs. In the event that there are children with disabilities in a family, the mother is expected to be the carer. While having a child with a disability places an additional burden on mothers due to the child’s unique characteristics, there is only a small body of literature on mothering children with visual impairments (VI) in the African context. In a cultural environment such as that of Ghana, it is important to understand mothering experiences.
Methods
Twenty mothers of children with VI who were at least 18 years old took part in this qualitative descriptive study. A semi-structured interview guide was developed and used to collect the data, which were then subjected to thematic analysis.
Results
Three themes were identified: opportunities for development, support services, and challenges faced by mothers. While the sample of mothers demonstrated high expectations, resilience, and a commitment toward raising their children, support services were unavailable to them.
Conclusions
While shouldering all the caregiving responsibilities, the participants remained resilient, did not appear to be stressed, and were committed to raising their children with VI.
The author, who is concerned with the methodological implications of critical theory, explores issues in the developing area of emancipatory research. She defines the concept of "research as praxis," examines it in the context of social science research, and discusses examples of empirical research designed to advance emancipatory knowledge. The primary objective of this essay is to help researchers involve the researched in a democratized process of inquiry characterized by negotiation, reciprocity, empowerment — research as praxis.
Scitation is the online home of leading journals and conference proceedings from AIP Publishing and AIP Member Societies
There are three theoretical and ideological biases in the field of the sociology of deviance. (1) Despite the attempt to show that the “deviant” is not different from the rest of us, the very emphasis on his identity and subculture may defeat that aim. (2) Certain forms of “deviance,” especially by the economic and political elite, are neglected. (3) The substantive analyses of sociologists of deviance contain no exploration of the role of power in the designation of “deviance,” despite their many statements to the contrary.
Introduction - Disability Definitions: The Politics of Meaning - The Cultural Production of Impairment and Disability - Disability and the Rise of Capitalism - The Ideological Construction of Disability - The Structuring of Disabled Identities - The Social Construction of the Disability Problem - The Politics of Disablement: Existing Possibilities - The Politics of Disablement: New Social Movements - Postscript: The Wind is Blowing - Bibliography - Index
This paper suggests that current ways of thinking about disability are inadequate, both theoretically and as a basis for social policy. The main reason for this is that most writers have remained locked within a ‘personal tragedy theory of disability’ and have failed to examine the concept of disability critically. Even those writers who have attempted to take disability seriously have failed to move beyond a traditional framework and have subsequently produced sterile accounts. The final section of the paper begins to suggest what a social theory of disability might look like.
Using anthropological methods and a theoretical perspective derived from the sociology of Erving Goffman, Robert B. Edgerton's The Cloak of Competence: stigma in the lives of the mentally retarded (1967) brought an unusual degree of empathy to attempts to understand the lives of those labeled ‘mentally retarded’. Yet the book was conceived prior to the time when mental retardation began to be widely formulated as a social construction rather than a clinical syndrome. This essay analyzes the consequences for Edgerton's understanding of the lives of recently deinstitutionalized people of this uneasy combination of empathy and acceptance of mental retardation as an unalterable condition. Particular attention is paid to the ways in which Edgerton's conceptualization of mental retardation served to deny to members of his sample a voice with which to speak authoritatively about their own situation. Edgerton's revisionist follow-up research, which called into question some aspects of his earlier conceptualization of mental retardation, is also discussed.
This paper will argue that the politics of disability has, so far, been narrowly conceived as part of the processes of party and pressure group activity. These approaches will be examined critically and it will be suggested that they are unlikely to produce substantial political gains in terms of ensuring the full participation of disabled people in society or contribute significantly to improving the quality of their lives. Finally, it will be argued that the politics of disability can only be properly understood as part of the newly emergent social movements of all kinds and it is only within this context that their real significance can be grasped.
For many years, community solutions have been the favoured response to physical and mental disability, but theoretical frameworks to guide these policies have not developed alongside the rhetoric. This paper attempts to fill the gap with one possible sociological model. We begin by distinguishing the dominant individualistic or ‘personal trouble’ perspective from the more controversial social or ‘public issue’ approach which, whether it takes an interpretative or a structural form, acknowledges the role of society in causing disabilities and shaping economic and social strategies. A model of policy is then drawn up for each viewpoint, bearing in mind the implications for public expenditure, state intervention, family and community support, and service organisation. Finally, it is argued that since help in the individualistic mould cannot cope with disability, an alternative response is required, which tackles economic, social and political institutions or structures while at the same time recognising the resistance to change in an industrial society.
Shows how current literature which attempts to explain racial and class struggle in Britain distorts the political reality by focusing on cultural rather than political and economic issues. Criticizes the work of John Rex for its incomplete analysis of the British social structure. (GC)
This book is "a questioning of the foundations of research in order to shed new light on the many very real and very important problems of sociological measurements. The author raises theoretical and methodological questions about objective and subjective procedures and examines many of the presuppositions of current modes of research." (PsycINFO Database Record (c) 2012 APA, all rights reserved)
This paper seeks to explore what feminist concerns may mean in the minutiae of the personal relations that develop within interviews, for example, notions of reciprocity, friendship, and collaboration. While the paper draws on the author's current experiences of qualitative interviews with various family members, especially mothers, it also considers how some of the issues are intrinsic to the research interview per se, of whatever style. The actual relations within the interview have to be considered against wider frameworks and assumptions. Interviews are a particular type of social encounter. All interviews, and interview “data,” are socially constructed. The researcher will inevitably have some power over the research process, and she must take responsibility for this power in the context of her own purposes in the interview. We may have to accept that research relationships are in some senses public, which creates inescapable tensions if we seek to regard them as purely private ones.
With two exceptions, the articles in this book, are reprints from the Journal of Thought, Vol. 19, No. 2, 1984 & Vol. 21, No. 3, 1986. Incl. bibl
The initiatives raised by the International Year of Disabled Persons led to an understanding that the community may well be the best place to help disabled people. It is important to ensure that any major switch of resources from institutional to community care should be properly appraised, not just on cost-effectiveness grounds but also on the needs of the disabled persons themselves. Apart from the traditional medical input there is an imperative need to involve other professional and informal helpers to ensure the best possible outcome.
Not the OPCS Survey: being disabled costs more than they said
- Disablement Income
DISABLEMENT INCOME GROUP (1988) Not the OPCS Survey: being disabled costs more than they said (London, Disablement Income Group).
DIG's National Disability Income
- Disablement Income
DISABLEMENT INCOME GROUP (1989) DIG's National Disability Income (London, Disablement Income Group).
Paper given at World Health Organisation Meeting
- M Oliver Finkelstein
M. Oliver FINKELSTEIN, V. (1985) Paper given at World Health Organisation Meeting, 24-28 June, Netherlands.
Listening to disabled people, Disability
- D Gerber
GERBER, D. (1990) Listening to disabled people, Disability, Handicap & Society, 5, pp. 3-24.
The Use and Abuse of Social Science
- F Heller
HELLER, F. (Ed.) (1986) The Use and Abuse of Social Science (London, Sage).
Social Science Research and Public Policy Making: a reappraisal
- D Kallen
- G Kosse
- H Wagenaar
- J Kloprogge
- M Vorbeck
KALLEN, D., KOSSE, G., WAGENAAR, H., KLOPROGGE, J. & VORBECK, M. (1982) Social Science Research and Public Policy Making: a reappraisal (Windsor, NFER-Nelson).
The Prevalence of Disability among Adults
- J Martin
- H Meltzer
- Elliott D
MARTIN, J., MELTZER, H. & ELLIOTT D. (1988) The Prevalence of Disability among Adults (London, HMSO).
Re-defining disability: some issues for research
- M Oliver
OLIVER, M. (1987) Re-defining disability: some issues for research, Research, Policy and Planning, 5, pp. 9-13.
International Classification of Impairments, Disabilities and Handicaps (Geneva, World Health Organisation)
- P Wood
WOOD, P. (1980) International Classification of Impairments, Disabilities and Handicaps (Geneva, World Health Organisation).