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In this article we study the concept of 'belonging' within the context of inclusive education. We see inclusion and belonging as two entangled concepts and focus on inclusion as an ethical process. We do this by analyzing the Flemish documentary Inclusief [Inclusive] to investigate the idea of belonging as building and finding roots. As a method we carry out a close reading of two episodes of the documentary and plug in theory to gain a deeper sense about the meaning of belonging in two students' life stories. In our writing process these fragments become tangible. Through the stories, we see how belonging emerges. We come to understand belonging in inclusive education as connected to the dynamic interplay with the context; listening with care; and radical relationality. By combining these elements schools can invest in becoming inclusive communities of care, and contribute to every student having a feeling of belonging. This paper explores the relation between inclusion in educational contexts and the sense of belonging of disabled students. The authors argue for a system approach to aim for inclusion instead of through case-by-case assessment. Through close reading of two episodes of the Flemish documentary Inclusief, the authors find that belonging is enhanced through the teachers' careful attention to the students' relations with each other. The authors state that creating space to enhance every student's belonging is carried out through listening with care and being open to many connections between the student and others. The interplay with the environment proves very important to stimulate a sense of belonging with every student. The authors argue that caring communities arise through close connections. [ABSTRACT FROM AUTHOR]

Abstract\nPoints of interestBlindness (in)directly affects all aspects of daily life and participation in society. Living with a visual impairment can be mapped in terms of the intra-actions between blindness and an individual’s networks. This study conceptualised visual impairment in the context of James and his different networks across his lifespan in an attempt to understand the contextualised and complex meaning of his disability. The lived experiences of James and his networks were unravelled, and their perspectives revealed two main encounters: decisions and processes on (inclusive) education and connecting with others. James and his networks discussed how he succeeded in regular education and how he adhered to higher educational norms. The narratives highlighted the pressure to ‘pass’, to have a space to belong in social spheres, and to function within social networks. The concept of ‘assemblage’, the entangled gathering of embodiment and relationalities, was helpful in unravelling the complex and contextual conceptualisations of blindness in James’ lived experiences.This article presents a personal narrative of the experiences of James, his family, and his friends in relation to blindness.This study’s perspective fundamentally assumes that everyone, including people with disabilities, is embedded in several networks of human and non-human elements.Disability is not an individual condition; rather, it is something relational and contextual. We want to understand the complexities of the participants’ experiences.In James’ networks, educational development in regular education is identified as a life goal that requires the input of everyone and everything.For living blindness, James and his networks also identified the relevance of being socially embedded and bonding with peers and friends.This article presents a personal narrative of the experiences of James, his family, and his friends in relation to blindness.This study’s perspective fundamentally assumes that everyone, including people with disabilities, is embedded in several networks of human and non-human elements.Disability is not an individual condition; rather, it is something relational and contextual. We want to understand the complexities of the participants’ experiences.In James’ networks, educational development in regular education is identified as a life goal that requires the input of everyone and everything.For living blindness, James and his networks also identified the relevance of being socially embedded and bonding with peers and friends. [ABSTRACT FROM AUTHOR]

Inclusive education is affirmed in Icelandic laws and regulations although, at upper secondary school level, schools can apply to establish special programmes for students who have been labelled as disabled. The application process for these programs differs from the one in the mainstream regarding arrangement and time. In this article, special attention will be paid to the application process for Icelandic students with intellectual disabilities at upper secondary level. We use Alecia Jackson's and Lisa Mazzei's methodology of thinking with theory by 'plugging' Iris Marion Young's philosophical concepts of oppression regarding social justice into the text, and vice versa. This approach reveals a discriminatory application process where cultural imperialism has the upper hand causing a denial of group differences. Students are being marginalised based on their support needs which can, among other things, result in systemic violence. [ABSTRACT FROM AUTHOR]

This special issue originated from a webinar series made possible through a Tri-Continental (3C) Partnership between the University of the Western Cape, the University of Missouri, and Ghent University. These universities organized a series of webinars on the theme “Doing Academia differently: In conversation with neuroatypicality.” The Tri-Continental (3C) Partnership is a trilateral agreement that set out to promote partnership between the three institutions during a time of travel restrictions due to the global pandemic. [ABSTRACT FROM AUTHOR]

People with disabilities are increasingly actively involved within research projects. For many of them this is a temporary role, but some work on longer-term projects and even build a career out of it. This is the case for the first author of this paper. He has worked as a researcher for almost six years. He is involved in various projects, all highly diverse in terms of subject, design, scope and collaboration with fellow researchers. In this paper, he looks back on his experiences in recent years. Together with colleagues, he reflects on his contribution to the various projects, his own development as a researcher and the impact of the work on his personal life. He finds that the essence of the motto 'Nothing about us, without us' has become increasingly intertwined with his life and identity through his work. [ABSTRACT FROM AUTHOR]

Community perceptions of people with disabilities are not uncommon and also have impact on access to services. This article discusses the results from interviews, participant observations as well as field notes with 62 participants (people with disabilities, families of people with disabilities, regular school teachers and principals, community-based rehabilitation personnel, non-governmental organization personnel, traditional leaders, religious leaders and social workers) regarding their perceptions of people with disabilities and the impact on access to services. The findings from the study revealed that community’s perceptions of people with disabilities are both negative and positive and have an impact on their access to schooling, health and rehabilitation services. The discussions/conclusions include difference in perspectives, beliefs and practices, impact of perceptions as non-linear, sensitization/flow of information and context difference. [ABSTRACT FROM PUBLISHER]

In 2006, a questionnaire was sent to 160 parents of children with Down syndrome in Dutch primary education (special and regular) with a response rate of 76%. Questions were related to the child's gender, age and school history, academic and non-academic skills, IQ, parental educational level, and the extent to which parents worked on academics with their child. In a 2010-follow-up, out of these 121 parents, 115 (95%) filled in a questionnaire on reading and school placement of 16 of these children, IQ was unknown. These children were excluded from the analysis. Controlling for reading scores at time 1 (2006) and the other 2006- variables, ANCOVA's showed that reading scores at time 2 (2010) were higher for children the more years they had been in a regular school between time 1 (t1) and time 2 (t2). This was true for the total group and particularly for the younger children (< 9 years), whether all children or only children still in regular education in 2006 were included. Predicting change scores confirmed this advantage of regular placement, but only in the younger children. Particularly during the first years of primary school, reading development of children with Down syndrome appears to be stimulated by regular school placement. [ABSTRACT FROM AUTHOR]

An introduction is presented in which the editor discusses various reports within the issue on topics including the conceptualization of Quality of Life (QOL), the social and cultural aspects in Israeli families, and the importance of spirituality and cultural beliefs.

Accessible summary In Belgium some adults with learning difficulties live with their siblings and siblings-in-law., The authors of this article listened to siblings-in-law, trying to understand how they felt about this living together., This article seems to be important for those persons with learning disabilities who give a lot about their sisters and brothers., Summary There is a lack of international research focusing on how the siblings-in-law of adults with a learning disability experience their commitment to provide support. Using narrative research, the authors have aimed to gain an insight into the perspectives of 14 siblings-in-law (living in the Flemish part of Belgium) about the decision to live together with a family member who has a learning disability. The decision to live together usually begins with a crisis. However, the decision process is a complex mechanism; it involves dynamics and events within a family (between family members both with and without blood relationships) and is intensified by experiences within a society that holds different views about families and disability. We are aided in gaining a deeper understanding of this complex process by considering interpretations based on the contextual framework of Boszormenyi- Nagy. [ABSTRACT FROM AUTHOR]

When early testing indicates a hearing loss, parents find themselves on a roller-coaster of experiences leaving little time or space for reflection. This study is based on interviews with families in the Flemish region of Belgium, one of the earliest in the world to introduce universal neonatal screening for hearing loss. Starting from a phenomenological approach, we explore parents’ accounts of their experiences in order to uncover the meanings of early parenting of a child identified with a label. Soon after birth, these parents encounter a different world in which intertwined discourses construct parenthood with a deaf child. During the process of becoming a parent, representations of deafness as impairment were omnipresent. In contrast to a medical and technological perspective that insists on the need to intervene as fast as possible, it is argued that the private and social implications of rapid intervention require explicit consideration. [ABSTRACT FROM AUTHOR]

In this article, the authors relate the life of Chris through narrative snapshots. Chris asked the authors to tell her story. They decided that it could be used to provide an insight into the different ways people with labels are confronted with professional practices and rituals. Although Chris lived a "tough life," her story is full of resilience and resistance. Chris will be kept in the authors' memory as a strong woman, a teacher, and a friend. [ABSTRACT FROM AUTHOR]

Abstract: The concept of quality of life (QOL) is increasingly being used as a support provision and outcomes evaluation framework in the field of intellectual disability (ID). The present study used a hierarchical multiple regression research design to determine the role that available supports strategies, environmental factors, and client characteristics play in assessed quality of life-related personal outcomes. Data were collected in Arduin Foundation in The Netherlands. Participants were 186 individuals with an intellectual disability. Results indicated that QOL-outcomes were significantly impacted by the availability of support strategies, living arrangement, status of employment and level of ID. [Copyright &y& Elsevier]

Person-centered planning is a well known and widely used approach to individual program planning in the field of intellectual and developmental disabilities. Its purpose is to develop collaborative supports focused on community presence, community participation, positive relationships, respect, and competence. Because there is little research on its effectiveness, our purpose here was to (a) review the current status of effectiveness research; (b) describe its effectiveness in terms of outcomes or results; and (c) discuss the effectiveness of person-centered planning in relation to evidence- based practices. Analyzed studies suggest that, overall, this planning has a positive, but moderate, impact on personal outcomes for this population. The body of evidence provided in this review is weak with regard to criteria for evidence-based research. [ABSTRACT FROM AUTHOR]

This paper presents the experiences and interpretations of children, parents, teachers and support persons concerning the implementation of supports in regular school environments in Flanders, Belgium. The data were gathered through observations, interviews and focus group meetings. Those multiple perspectives provide insights into the complexity of implementing supports in a regular education context. The conclusions offer some possibilities for debate and alternative ways of thinking about supports that facilitate inclusive school communities by tapping into resources such as the children, the environment, creativity and courage to leave the beaten path. [ABSTRACT FROM AUTHOR]

This article addresses the participation rights in research of potentially vulnerable children, in this case children who have survived a serious traffic accident. Children's involvement in research is generally thought to be a balancing act between their welfare rights and their participation rights. However, the general view that children are vulnerable, incompetent, and lack power, makes adults consider that first and foremost it is their duty to protect them. As a result their welfare rights are overemphasized. To leave this dichotomist thinking behind us, we took a relational ethics approach in our research project and this from the very first phase when we were recruiting children to participate. We will focus in detail on the call for participation, the personal communication with participants, the importance of visualising one's message, the boundaries of conventional informed consent, and the multidirectional care provisions. [ABSTRACT FROM AUTHOR]

Good research should be relevant and useful, it may even be enlightening or symbolic, but it can also be emancipatory. Qualitative research can be useful in challenging structures, policies and practices that disempower and marginalize segments of the population. However, could it be that the empowerment of the participant ends where the weakness of the researcher begins? In qualitative studies the researcher seems to have a number of favourite interviews. In a study on the relational and sexual experiences of 46 people with learning disabilities, 12 interviews were withdrawn from the general data on the basis of lack of relevance. It is important to re-examine why the voice of some people fell out of the in-depth analysis and whether this was justified. In this article some methodological opportunities and pitfalls to re-grant identity to these silenced narratives are considered and discussed. [ABSTRACT FROM AUTHOR]

This article examines the experience of inclusive education from the perspective of disabled children. We worked with the observations of, and interviews with, 15 children, aged 5–17 who go to a mainstream school. The study is set in the context of a 3-year research project exploring the practice of inclusive education in Flanders. Here, we report on the key findings from the children’s accounts, focusing on what they had to say about themselves, what they think about school, friends, support and their future prospects. [ABSTRACT FROM AUTHOR]

The practice of making disability worlds is investigated both theoretically, in the context of developments in disability studies, In particular in the cultural model of disability, and practically in two examples, namely inclusive education environments and public environments. Theoretically, we argue that disability worlds can be better understood by introducing the notion of disability cosmology as the largest possible perspective on the making of disability worlds. A cultural model research perspective of disability consists then of the complementary study of disability identity, culture and cosmology. The practical examples work out the particularities of making and understanding disability worlds. In the making of disability worlds, much attention goes to the ways in which disability worlds relate to the normative world; for example in the formation of boundaries and transgressions, but also fundamentally how disability adds to becoming human. [ABSTRACT FROM AUTHOR]

This ethnographic study shows the impact of the care system on clients’ and staff’s life experiences, with the clear distance between these two groups as one of the core issues. Together with a dominant care approach and a well established but subtile system of control , it makes them function in systems that are characterized by an oppressing care culture. Learned helplessness prevents both groups of acting upon quality of life outcomes. The idea of supporting a life of good quality through merely improving these traditional care systems should therefore be considered with caution, and real alternatives should be considered to open this barrier of the oppressing care culture. [ABSTRACT FROM AUTHOR]

Our post-modernist story is composed as a narrative analysis of the lived experiences of Belle and Louise--two women with 'learning difficulties'--and our ethnographic field notes while doing narrative inquiry. The narratives mirror a shared construction of meaning and broaden our understanding--throwing light on the dark side of an institution. The narrative analysis points out a clear illustration of power dynamics and discourses in their lives, and shows how the women boast of resilience and offer (hidden) resistance. This paper particularly illuminates the individual, personal and even private celebration of activism and self-empowerment of Belle and Louise. Their vivid stories take us on an enthralling journey, getting to know their world through their eyes. [ABSTRACT FROM AUTHOR]

In Arduin, an organisation for services to people with learning disabilities in the Netherlands, the emancipation and self-determination of people with learning disabilities has been positively adopted as fundamental in order to secure the best possible quality of life of the clients. The client is being encouraged in several ways in a development from a position of dependence towards self-determination. The services provided by the organisation had to be adjusted accordingly and are also going through a transition from 'providing a total care service' towards 'offering the support that the client desires'. In this article the background and developments in perception are being outlined, and those dimensions in quality of life are elaborated that are seen as most essential in the innovation: inclusion, self-determination and personal development. The choices that were made as a consequence in Arduin and most fundamental the choice to dismantle the institution are described. [ABSTRACT FROM AUTHOR]

Since March 2020, Uganda has confirmed cases of COVID-19 and implemented a response to curb the spread, which included over 12 months of school closure for most children. In this study we investigated parents' perspectives of the impact of the COVID-19 response on education of children with disabilities enrolled in primary schools in Central Uganda during the first 12 months of the outbreak. We conducted four rounds of interviews with 27 parents of children with disabilities, which were analysed thematically. Parents described a lack of financial resources, food, learning materials, and teaching skills necessary to provide meaningful home education. Parents were concerned about the long-term impact school closure may have on their child's development, behaviour, and social life. Although parents were happy about the phased school re-opening, they expressed concerns about the financial costs involved in sending children back to school, and wondered how children would cope with prevention measures. School closure has greatly impacted the education of children with disabilities in Uganda. There is a need to consider inequality, poverty, and culture when studying children with disabilities during the COVID-19 outbreak, and prioritise and include this group in designing COVID-19 responses, prolonged home learning and school reopening plans. [ABSTRACT FROM AUTHOR]

Inclusive research practices can lead to progress towards an inclusive society. With this study, we aimed to gain insight into dilemmas and catalysing processes within the long-term collaboration of an inclusive research duo: one non-academic researcher who lives with the label of intellectual disabilities and visual impairment, and one academic researcher. Both researchers kept personal diaries about their collaboration process. Inductive thematic analysis, individually and as a group of authors, was employed. Our findings reveal six necessary conditions for diversity-sensitive work in inclusive research: (a) experiencing belonging within the research group, (b) empowering people in a team through growing self-awareness and competence-building, (c) having room for reflection and searching for various ways of communication, (d) sharing power and ownership of research processes, (e) having enough time to foster the above conditions, and (f) joining in a mutual engagement in accommodating vulnerability in dialogue and collaborative work. Awareness of stigma-related issues and the risk of tokenism is also required. [ABSTRACT FROM AUTHOR]

This study engages with children sharing experiences of belonging at school, of receiving access and of exploring complex relationalities along shifting borders in educational spaces. Their understandings offer a magnifying glass on normativity, difference and social positions in school spaces. Through 'flattening and folding' with material and theoretical concepts, the authors map how qualitative data images made by children and theory constitute one another to make sense of complex relationalities discussed by children. The project desires to make sense of blurry borders that exclude children in educational contexts and to push borders in methods and ethics in research with children. [ABSTRACT FROM AUTHOR]

This article takes a post-qualitative stance upon the construction and taking up of certain positions in research by children and adults, and explores how emergent assemblages of (non-)human agents shape how children's voices are expressed and genuinely listened to within intra-active research encounters. Plugging in post-qualitative concepts as 'listening', 'response-ability' and 'becoming-with', this article analyses key incidents (that emerged during a research process in Flanders) in order to reconfigure voices, discourses, methodologies and ethics in research with children. [ABSTRACT FROM AUTHOR]

This article explores what (working with) matter can tell us that language cannot or does not completely tell, about becoming a sensual, sexual woman free to move smoothly in and with her body. It explores how (working with) matter can transform living in, with and through a body, and how it affects and is affected. The text is centred around "touchpoints," that is, encounters through touch, as experienced by the first author as a dancer on wheels, and diffracted and narrated through poetry and images interwoven with theory. These encounters are seen as mo(ve)ments in a powerful agential assemblage that holds both danger and transformative possibilities, leading us to reimagine freedom as a river of sparring intensities. [ABSTRACT FROM AUTHOR]

Inclusive education interventions in low-income countries are dominated by definitions and frameworks from disability studies and educational research scholars from high-income countries. Disability studies scholars have argued for valuing diverse understandings and a different discourse when studying disability and inclusion in low-income countries. In this paper, we explore the meaning of belonging and inclusion to parents of children with disabilities in central Uganda. Through case study analysis we aim to give alternative starting points for inclusive primary education programmes. We explore the themes 'missing parts', the 'ability to manage', 'belonging to a family', and 'being given a chance' as key concepts of disability and inclusion. We argue not to translate parents' descriptions into international categories and framework, but to reflect on the larger and underlying meaning of the concepts to form a more culturally embedded and relevant starting point of education for all. We propose to address the gaps of the postcolonial education system that has taken teachers' and families' away from the concept of 'obuntu bulamu', and focus interventions on re-creating this togetherness and value the strength of concepts of belonging and caring for each other. [ABSTRACT FROM AUTHOR]

Background: Obuntu bulamu , a peer-to-peer support intervention for children, parents and teachers to improve the participation and inclusion of children with disabilities (CwD), was developed and tested in Uganda. The intervention consisted of disability-inclusive peer-to-peer training and support activities. In this article, parent participation in and evaluation of the intervention are discussed. Objectives: The study aims to evaluate the acceptability and feasibility of the intervention. Methods: A qualitative Afrocentric intervention study was implemented in 10 schools in Wakiso district in Central Uganda. Researchers purposely selected CwD aged 8–14 years, their peers and parents from 10 primary schools with on average three CwD per school. A total of 64 study parents (33 parents of CwD and 31 peers) were interviewed at baseline and endline. Two focus group discussions were held with 14 parents at midline. Parents also participated in a consultative meeting about the intervention design at baseline and two evaluation and feedback workshops at midline and endline. Thematic data analysis was conducted. Results: Findings showed that parents found the intervention inspiring, acceptable, culturally appropriate and supportive, as it built on values and practices from their own cultural tradition. Parents reported that the intervention enhanced a sense of togetherness and belonging and helped them to develop more positive attitudes towards CwD and disability inclusion. They felt the intervention increased participation and inclusion of CwD at home, school and in communities. Conclusion: The Obuntu bulamu peer-to-peer support intervention is an acceptable, culturally appropriate intervention with the potential to improve inclusion of CwD. Further studies are recommended to measure the effectiveness of the intervention. Contribution: The paper contributes to existing evidence that there is need for more Afrocentric interventions, which built on cultural values and practices. Interventions based on indigenous values have a greater potential to be acceptable, can foster integration and are likely to be more sustainability to achieve disability inclusion. In the article we describe parental perspectives of the Obuntu bulamu intervention, an intervention to improve inclusion of children with disabilities, which was designed by children, parents, teachers, educationalists, and academics from Uganda. [ABSTRACT FROM AUTHOR]

The movement towards inclusion comes together with a neoliberal audit mentality whereby individuals are held responsible for the transformations. The Special Educational Needs Coordinators (SENCOs) are seen as ‘change agents’ whose task it is, to support teachers in adapting their approach to optimise the chances for children with special needs in regular schools. In this paper, we want to problematise the ‘responsibility-blame discourse’ and look differently at agency. By using a diffractive methodology based on collaborative work, in which we have used material images of the workplace of the SENCO, and read-the-data-while-thinking-with-theory, we deconstruct the individualisation of agency. The SENCOs are no longer seen as separate individual humanist subjects where agency is solely lodged in the body of an individual agent [Barad, K. 2007. Meeting the Universe Halfway: Quantum Physics and the Entanglement of Matter and Meaning. Durham: Duke University Press] but the SENCOs are part of the intra-active entanglement of multiple agencies, of an assemblage. This re-conceptualisation of agency leads to a different approach to inclusion, in which the participants in any encounter can work as part of the assemblage to develop communities capable of re-thinking practice and transforming it into a place where children with special needs become legitimate members of the school. [ABSTRACT FROM AUTHOR]

Background: Professional support for people with intellectual disabilities is increasingly delivered remotely. Understanding what support workers do to support people with intellectual disabilities remotely, and how they do this, is therefore important. The purpose of this study was to gain insight into the remote support practice of the support staff of the Dutch service DigiContact. Methods: A qualitative study was performed in which we followed an inductive‐iterative process and used different sources of information: documents, interviews with people who are supported by DigiContact and their caseworkers, and interviews with DigiContact support workers. Findings: Seven themes were constructed and described. Four themes reflected the support activities of DigiContact support workers, and three themes reflected qualities that guide how the support is provided. Conclusions: A remote support context can bring both challenges and opportunities to the practice of supporting people with intellectual disabilities. The findings can be useful for service organisations who are contemplating the adoption of remote support initiatives for people with intellectual disabilities. Accessible summary: This research was conducted by a team of researchers. One of the researchers had experience with living with an intellectual disability.This research is about remote support. Remote support is support that is provided from a distance, for example through video calls or phone calls. In the Netherlands, there is a service that provides remote support. This service is called DigiContact.We wanted to know what DigiContact support workers do to support people.We found that the support workers try to make people feel welcome and safe. They help people to use their own skills, knowledge and talents to solve problems. It is important that the support workers work together with other support workers who provide onsite support.The results are interesting for anyone who wants to know what remote support is and what it can do. The results can also give organisations ideas on how they can organise remote support. [ABSTRACT FROM AUTHOR]

eHealth applications are increasingly being used in services for people with intellectual disabilities (ID). DigiContact is an online support service that uses videoconferencing techniques to enable people with ID to contact a team of specially trained support workers 24/7. In this qualitative and participatory study we aimed to explore the experiences of independently living people with ID with what it is like to be supported online. Five online support users were each interviewed twice and the transcripts were analysed using a phenomenological hermeneutic method. Choice and control played a central role in their shared experiences, as well as the relationship with online support staff. The results indicate that the suitability of online support depends on the needs, capabilities and preferences of each individual support user. This underlines the importance of a personalised approach to the planning and delivery of online support. In this research we interviewed five persons from the Netherlands about what it is like for them to be supported by the online service DigiContact. They felt that DigiContact helped them to have access to sufficient professional support. Without DigiContact this would have been impossible, because of a reorganisation of the national long-term care system and cuts in care budgets. They also felt that DigiContact gave them control over their support and stimulated them to take on an active role towards solving their problems. Online support felt relatively impersonal, because they had contacts with different support workers. We conclude that online support seems not to be equally suitable for everybody. Whether online support is suitable, and in what form, depends on someone's personal needs, wishes and preferences in support. Service organisations should look carefully at each individual person when planning the use of online support. [ABSTRACT FROM AUTHOR]

This paper engages with conversations with two teachers who each build socially just pedagogies and engage in minor gestures in response to the socio-educational-political reality they were confronted with – namely, a pupil disappearing from the classroom when her parents' application for immigration was rejected. In an assemblage connecting the conversations to a transforming picture of an empty desk, to social media posts and online news sources and to post-qualitative literature, we reconfigure the empty desk into polyvocal, continuously moving metaphors and remain attentive to the affective and material forces of the stories that the two teachers tell. The desk functions as (1) a speaking medium and symbol of protest against the violation of children's rights, (2) a relational force in a broken class group, (3) a part of a pedagogical space for learning democracy, and (4) a mirror on our contemporary society. These metaphors become minor gestures and invite us to fulfill our ability to respond ('response-ability') to the violation of rights of 'invisible children' and the daily realization of inclusive education for all children in class. [ABSTRACT FROM AUTHOR]

Background: Obuntu bulamu, a peer-to-peer support intervention for children, parents and teachers to improve the participation and inclusion of children with disabilities (CwD), was developed and tested in Uganda. The intervention consisted of disability-inclusive peer-to-peer training and support activities. In this article, parent participation in and evaluation of the intervention are discussed. Objectives: The study aims to evaluate the acceptability and feasibility of the intervention. Methods: A qualitative Afrocentric intervention study was implemented in 10 schools in Wakiso district in Central Uganda. Researchers purposely selected CwD aged 8--14 years, their peers and parents from 10 primary schools with on average three CwD per school. A total of 64 study parents (33 parents of CwD and 31 peers) were interviewed at baseline and endline. Two focus group discussions were held with 14 parents at midline. Parents also participated in a consultative meeting about the intervention design at baseline and two evaluation and feedback workshops at midline and endline. Thematic data analysis was conducted. Results: Findings showed that parents found the intervention inspiring, acceptable, culturally appropriate and supportive, as it built on values and practices from their own cultural tradition. Parents reported that the intervention enhanced a sense of togetherness and belonging and helped them to develop more positive attitudes towards CwD and disability inclusion. They felt the intervention increased participation and inclusion of CwD at home, school and in communities. Conclusion: The Obuntu bulamu peer-to-peer support intervention is an acceptable, culturally appropriate intervention with the potential to improve inclusion of CwD. Further studies are recommended to measure the effectiveness of the intervention. Contribution: The paper contributes to existing evidence that there is need for more Afrocentric interventions, which built on cultural values and practices. Interventions based on indigenous values have a greater potential to be acceptable, can foster integration and are likely to be more sustainability to achieve disability inclusion. In the article we describe parental perspectives of the Obuntu bulamu intervention, an intervention to improve inclusion of children with disabilities, which was designed by children, parents, teachers, educationalists, and academics from Uganda. [ABSTRACT FROM AUTHOR]

Background: Children with disabilities in Sub-Saharan Africa depend for a large part of their functioning on their parent or caregiver. This study explores parental stress and support of parents of children with spina bifida in Uganda. Objectives: The study aimed to explore perceived stress and support of parents of children with spina bifida living in Uganda and the factors that influence them. Methods: A total of 134 parents were interviewed. Focus group discussions were held with four parent support groups in four different regions within the country. The Vineland Adaptive Behaviour Scales, Daily Functioning Subscales and Parental Stress Index Short Form (PSI/SF) were administered to measure the child's daily functioning level and parental stress levels. Results: Parental stress was high in our study population with over half of the parents having a > 90% percentile score on the PSI/SF. Stress outcomes were related to the ability to walk (Spearman's correlation coefficient [ρ] = -0.245), continence (ρ = -0.182), use of clean intermittent catheterisation (ρ = -0.181) and bowel management (ρ = -0.213), receiving rehabilitative care (ρ = -0.211), household income (ρ = -0.178), geographical region (ρ = -0.203) and having support from another parent in taking care of the child (ρ = -0.234). Linear regression showed parental stress was mostly explained by the child's inability to walk (β = -0.248), practicing bowel management (β = -0.468) and having another adult to provide support in caring for the child (β = -0.228). Parents in northern Uganda had significantly higher scores compared to parents in other regions (Parental Distress, F = 5.467*; Parent-Child Dysfunctional Interaction, F = 8.815**; Difficult Child score, F = 10.489**). Conclusion: Parents of children with spina bifida experience high levels of stress. To reduce this stress, rehabilitation services should focus on improving mobility. Advocacy to reduce stigmatisation and peer support networks also need to be strengthened and developed. [ABSTRACT FROM AUTHOR]

In Uganda, public health and education services are poorly equipped to respond to needs of children with spina bifida. Such children are highly dependent on their families for care and support. In this study, we explore the children's and their siblings' perceptions of family relationships, support, restrictions and care to inform policy and practice for the children and their families. Semi-structured interviews were held with 30 children with spina bifida, and 30 of their siblings in central Uganda. Using the Family Relations Test, we created a set of local dolls and culturally appropriate messages to evaluate the children's feelings about their family members and themselves. Our findings confirm a highly interdependent and supportive family care model in which mothers play a key role in the children's lives and care; fathers are relatively absent for both children with spina bifida and their siblings; siblings, and other household members play an important role in the care and social inclusion of children with spina bifida; and children with spina bifida have more negative self-perceptions compared to their siblings. The internal family networks of children with spina bifida in Uganda are wide and varied, and characterized by higher support from mothers and elder siblings and househelps. We argue for an extended family centered approach in health care and social services, in which children with spina bifida, their parents (including their fathers), siblings, house-helps and other family members are included. We believe family led advocacy for inclusive care and support services on community and national level is key to enable a shift in the current service model and thinking about persons with disabilities in the country. [ABSTRACT FROM AUTHOR]

This article draws explicitly on the fieldwork challenging experiences of an ongoing PhD study which seeks to explore the role of the community in the inclusion of people with disabilities in the Northwest Region of Cameroon. It is apparent that every qualitative researcher undertaking fieldwork anticipate being confronted with challenges and difficulties in the process. Nevertheless, in spite of the anticipation of these challenges and complexity that exist in the field, as well as prior preparation, fieldwork can still be a very intense and challenging experience. This is because many unanticipated encounters arise during fieldwork, which the researchers did not see coming. Whilst acknowledging that fieldwork in qualitative research can be challenging and complex, the unanticipated and underestimated magnitude and intensity of the challenges that occurred in undertaking qualitative fieldwork in the Northwest Region of Cameroon is the interest of this paper. [ABSTRACT FROM AUTHOR]

Background: Professional support for people with intellectual disabilities is increasingly provided remotely. This study explores what support staff of the Dutch remote support service DigiContact experience as distinctive aspects of their job as a remote support professional. Method: Semi‐structured interviews were held with 10 DigiContact support workers. The transcripts were analysed through a qualitative content analysis process. Results: Six themes were identified that reflect distinct aspects of the participants' work within the DigiContact remote support context: being encouraged to adopt a solution‐oriented coaching support style; being limited in one's support options; facing considerable diversity; providing support as one team; dealing with unpredictability; and navigating the dynamic within work shifts. Conclusions: The way support is organised and delivered can have substantial implications for support professionals. Working at a service like DigiContact seems to call for specific skills, knowledge, affinities and experience, and for appropriate support and facilitation from organisations. [ABSTRACT FROM AUTHOR]

To understand the impact of the COVID-19 public health response on families of children with disabilities in Central Uganda we conducted phone interviews with parents and children during the first 5 months of the outbreak (March - July 2020). Most parents and children were well informed about COVID-19 and were keen to adhere to government prevention measures. The majority said lock-down measures had a negative effect on their mental and physical health, social life, finances, education and food security. Access to medical services and medication for chronic illness had been limited or absent due to restrictions in travel, some facilities restricting access, and limited financial resources. The majority of parents reported loss of work which resulted in difficulties in finding enough food and paying rent. Parents worried about children missing education and friends. We suggest greater attention to children with disabilities and their families when implementing mitigating and long-term responses. This paper reports a study with families of children with disabilities in Uganda during the Coronavirus pandemic in 2020, known as COVID-19. Families of children with disabilities in Uganda are well informed about COVID-19 and try to follow prevention measures. Families of children with disabilities have difficulties meeting daily basic needs as they were unable to work and had no income during the COVID-19 related lock down. The COVID-19 response affects access to health and rehabilitation services for children with disabilities in Uganda. Parents of children with disabilities struggle with home education and learning due to lack of access to accessible learning materials and learning support in Uganda. The COVID-19 response affects the peer support networks and social support for parents of children with disabilities in Uganda. Children with disabilities and their families should be involved and considered in the development and implementation of the COVID-19 response. [ABSTRACT FROM AUTHOR]

In this article, we discuss not only the complexity of some difficult ethical issues but also the peculiar and reciprocal engagements that emerged during the research process carried out with Jimmy Sax, along with the ways in which we have attempted to deal with the ethics of research to avoid a reproduction of processes of Othering in the field of critical disability studies. In the existing body of qualitative research literature, an increasing number of researchers document their experience of the issue of situational and relational research ethics. However, since research evolves as an activity embedded in social, political, and historical contexts, we argue that qualitative researchers should also embrace sociopolitical research ethics. In that vein, inspired by poststructuralist (and) feminist philosophers, we identify and discuss two different conceptualizations of research ethics, referring to care for the other and care of the self. [ABSTRACT FROM PUBLISHER]

Ehlers-Danlos syndrome and hypermobility spectrum disorder affect daily life. There is a lack of research that investigates how the disease affects aspects of participation. This study investigates whether there is a difference in the level of participation in society in persons with vascular EDS (N = 18), hypermobile EDS (N = 20), classical EDS (N = 4) and Hypermobility Spectrum Disorder (N = 27), compared to a healthy control group (N = 69) and fibromyalgia (N = 69). In this retrospective case-control study, the Ghent Participation Scale was completed by all participants. Each patient with EDS and HSD was matched by age and sex to healthy controls. The hEDS and HSD group were compared with the healthy control group and a positive control group (persons with fibromyalgia). The results show that there was a significant lower overall participation score for persons with hEDS/HSD compared to the healthy control group. In addition, significant differences were observed in the subscores self-performed activities and delegated activities in the hEDS/HSD group compared to healthy controls, being HEDS/HSD patients who obtained the lower scores. Further research is needed to obtain representative results of the participation level for the EDS/HSD population. In this way, interventions can be set up for patients with EDS in an evidence-based way and that are appropriate to the patient's level of participation. [ABSTRACT FROM AUTHOR]

When it comes to disability, powerful ideas are articulated in and circulated through the media. Through framing analysis, this study examines how the media portray disability and people with disabilities in a sample of Flemish print news and entertainment magazines. The study aims to understand the dominant and alternative frames related to disability by scrutinising which aspects of reality are selected, rejected, emphasised or modified in the production of a media text. Participatory analysis of articles from 16 Belgian magazines over one year (n = 184) reveals a number of frames and counter-frames. Results indicate that the media tend to perpetuate and reinforce the stigma of those categorised as disabled as 'Other' and disability as one of the most frightful obstructions in one's life, while counter-frames underlining the notion of persons with disabilities being different but not 'abnormal' are relatively absent. This study offers insights into dominant and alternative frames related to disability in the Flemish print media. Frames can be described as the angles or perspectives from which a media story is told. Media texts from different media magazines were analysed by means of a framing analysis. The research reported here was 'inclusive' research, thereby combining and equally valuing experiential knowledge as well as academic knowledge from different contexts and disciplines. In this article, an inventory of dominant frames was developed, together with alternative counter-frames that may offer 'new' perspectives regarding disability. This type of research covers academic research in the intersecting fields of Media Studies and Disability Studies, and makes a contribution on both an empirical and a methodological level. [ABSTRACT FROM AUTHOR]

The original adage of the movement of people with disabilities 'Nothing about us without us' is fortunately more and more adopted in the research world. There is, for example, increasing recognition of the importance and value of actively involving people with intellectual disabilities in research projects on topics that are relevant to them. In a current doctoral research project, a co-researcher with an intellectual disability was recruited to work together with the doctoral researcher. Now that this project is nearing completion, it is time to look at some aspects of their collaboration and see what we can learn from this process. In several (joint) meetings, the researchers reflected on their personal experiences with working and researching together. Our reflections are presented using three overarching themes: preparations for the collaboration, collaborating as a complex process, and conducting research together. The discussion focuses on what can be inferred from these personal experiences with regard to the following three topics: how inclusive research can be organised best, the possible benefits of the collaboration for the researchers involved, and the possible impact of the collaboration on the quality of the research. [ABSTRACT FROM AUTHOR]

The objective of this study was to explore the experiences of men with paraplegia with regard to how they choose activities. The study involved a qualitative research design, based on a phenomenological–hermeneutical method. The findings revealed that the activities participants were choosing could be on a continuum between the individual’s self and the influence from their environment. On this continuum, the choice to perform activities was influenced by two mediating factors: the individual’s activities performed during their life-history, and their activity challenges for the future. We conclude that choosing activities is an individually constructed internal process of negotiation. Feelings of resignation and revolt appear in combination with feelings of justice and injustice when balance is not found. This knowledge provides a better understanding of the impact of spinal cord injury, sheds light on the development of distress after spinal cord injury and sheds new light on individuals’ feelings of participation. [ABSTRACT FROM AUTHOR]

The objective of this study was to explore the experiences of men with paraplegia with regard to how they choose activities. The study involved a qualitative research design, based on a phenomenological–hermeneutical method. The findings revealed that the activities participants were choosing could be on a continuum between the individual’s self and the influence from their environment. On this continuum, the choice to perform activities was influenced by two mediating factors: the individual’s activities performed during their life-history, and their activity challenges for the future. We conclude that choosing activities is an individually constructed internal process of negotiation. Feelings of resignation and revolt appear in combination with feelings of justice and injustice when balance is not found. This knowledge provides a better understanding of the impact of spinal cord injury, sheds light on the development of distress after spinal cord injury and sheds new light on individuals’ feelings of participation. [ABSTRACT FROM AUTHOR]

Quality of life scores obtained from self-reports might not be the same as those obtained from a family member or direct support staff. The purpose of the two studies reported in this article was to evaluate further the impact on quality of life scores of self-report vs. proxy ratings. The Personal Outcomes Scale was administered to persons with an intellectual disability. The self-report version, as well as the direct observation version, was administered. In the use of the direct observation form, direct support staff and family members acted as respondents. Study 1, which evaluated the consistency between self-report and direct observation data using support staff as proxy respondents, found significant mean differences between the two respondent groups in three quality of life domains and an acceptable level of internal consistency for both self-report and direct observation strategies. Study 2, which evaluated the difference between self-report (by the client) and proxy ratings (of the same individual) using direct observation interviews with family and support staff as respondents, found some differences between client and staff ratings but no significant differences between client and family ratings. Correlations between respondent group scores fell within the 'good category.' The authors noted the need for methodological pluralism in quality of life assessment, the importance of self-report by persons with intellectual disability, and the need to develop better and more reliably user-friendly strategies to evaluate quality of life outcomes for those individuals who either do not or cannot respond for themselves. [ABSTRACT FROM AUTHOR]

Purpose: To open a discourse on the concept of autonomy as a precursor for participation in individuals with Spinal Cord Injury (SCI) by exploring the experiences about their perceived autonomy in their transition period from hospital to home. Method: Based on the 'grounded theory' approach; in-depth, semi structured interviews were conducted with 11 SCI-patients. A theoretical sampling strategy was used and the data was analysed according to the constant comparative method. Results: To capture this complexity of autonomy, the results have been structured in themes with regard to the self of the patient and his independency. The analysis showed four different typologies of how autonomy is perceived; (1) the active agent, (2) the active follower, (3) the passive follower and (4) the passive victim. Conclusion: Rehabilitation professionals can help individuals in disconnecting their internalised ideal of independency to avoid the illusion of being autonomous and can gain insight in the patients' typology and empower patients to avoid the paradox of being autonomous. If the ultimate goal of rehabilitation is participation; empowering the patient to achieve a 'sense of agency' instead of autonomy is the central goal for rehabilitation professionals. Empowerment and agency are key topics for the patient to gain mastery over his own life. [ABSTRACT FROM AUTHOR]

The grand narrative of modernism is a dominating story with profound sociopolitical implications in the lives of people with the label of intellectual disabilities. In this article, we throw light on the life stories and interpretive theories of self-advocates, which usually remain hidden between the story-lines of life. Professionals in the field are being pressed to address self-advocates' existential challenges and move us, as theoretical allies, towards deeper conversations about disability theory. Here, we search for a useful theoretical framework to support the circulation of their wisdom and knowledge. We experiment with poststructuralist and feminist pointers and, in particular, some of the notions of Deleuze and Guattari's (1987) rhizome. [ABSTRACT FROM AUTHOR]

The authors focus on the differences between a quality of care and a quality of life approach to services and supports for persons with intellectual disabilities. They distinguish between quality of care and quality of life program foci, present an example of how one large agency in the Netherlands converted from a quality of care to a quality of life-focused organization, and discuss the consequences of such a conversion. They note that organizations that have transitioned successfully to a quality of life emphasis focus on measuring person-referenced outcomes related to personal experiences and circumstances that reflect an increase in the person's independence, productivity, community integration, and satisfaction. The authors conclude that in the future more agencies and organizations will move from a quality of care to a quality of life-oriented service and supports system and suggest a number of fundamental principles and change strategies that could facilitate this transition process. [ABSTRACT FROM AUTHOR]