Gender has often been overlooked in the lives of people with intellectual disability, resulting in a limited understanding and service response. This is in part due to a lack of knowledge about the way people with intellectual disability negotiate and build a gendered identity. In this article we present research undertaken with six young women with an intellectual disability who worked with the first researcher to co-develop some stories from their lives. We show how, facilitated by an innovative method which focused on meaningful engagement, the women told stories of richly gendered lives and subjectivities. Their stories showed how gender can be a desired and productive subjectivity, and how consideration of gender can help to identify resistance and agency in their lives. Their stories illustrate how gender is necessary in forming a comprehensive understanding of the lives of women with intellectual disability.
Purpose: The aim of this article is to conceptualise the phenomenon of therapy-related parental stress in parents of children with a physical disability.
Methods: Three models related to parental stress were reviewed, i.e., general parental stress, burden of caregiving in parents of children with physical disabilities, and experiences of these parents with their child’s therapy.
Results: The proposed definition of therapy-related parental stress is “the subjective stress and subsequent changes of functioning and health experienced by a parent of a child with a physical disability in response to paramedical therapies (i.e., physical, occupational, and/or speech and language therapy)”. A theoretical model is proposed to describe the process of therapy-related parental stress. Available questionnaires will most likely not be valid and responsive to capture the (changes in) stress parents experience related to therapy their child receives.
Conclusions: This article provides a first definition of therapy-related parental stress and a theoretical model to visualise the processes with regard to this topic. Empirical testing of the presented components and their coherence is needed to confirm or improve the model. A questionnaire that specifically measures the concept of therapy-related parental stress is needed, along with evaluating therapy-related parental stress in clinical practice and research.
Purpose: To describe the experiences of growing up after acute paralytic poliomyelitis and strategies used to adapt to the new situation.
Methods: Seven women and seven men (mean age 70 years, min–max 61–78 years) with late effects of polio, who had contracted paralytic polio in their childhood. Data were collected using semi-structured interviews, transcribed verbatim, and analyzed by systematic text condensation.
Results: Memories of contracting acute paralytic poliomyelitis involved being immobilized and sent away from home for surgical and physiotherapeutic treatment. Growing up in a social context that was often tough and unfriendly resulted in the development of strategies, such as optimistic thinking, trying to blend in, trusting one’s ability to manage, and to handle the preconceptions and expectations of others. At the onset of late effects of polio, some of these strategies were still functioning, whereas overachieving, disregarding pain, and weariness were not.
Conclusion: The challenges of growing up with a disability following paralytic polio led to the development of various psychological strategies for managing daily life. By understanding these experiences and strategies, knowledge may be gained in assisting rehabilitation professionals to better support persons with late effects of polio in adapting to the new situation.
There has been some progress in the United Kingdom regarding official recognition of the existence and needs of disabled asylum seekers and refugees. However, references are commonly accompanied by euphemistic labels, particularly of ‘vulnerability’. This should be understood in the context of systematic reduction of services and support available to the wider population of asylum seekers and disabled people in the United Kingdom. I argue that these processes reinforce each other and that both undermine a rights-based approach. Focusing on recent asylum and immigration policies, I explore how labels of ‘vulnerability’ obscure systemic oppression and distract from the rights and achievements of disabled people. The regressive elements of vulnerability discourse are presented as if better than nothing. Such discourse risks reinforcing hegemonic acceptance of distinctions of human worth, with detrimental impact for migrants and citizens alike.
In this article we discuss ableist manifestations about chronically ill and disabled schoolchildren in Sweden. On claiming their right to schooling, these children risk being excluded due to not conforming with norms while being refused alternative formats that would enable participation. They are then accused of not attending school and construed as problematic. Parents are derided as mollycoddling perpetrators by teachers who perceive themselves as superior knowers of disability and illness, polarising an already infected school debate. Alternative formats for participation are derided, claiming that certain disabilities do not exist or that parents exaggerate their children’s symptoms. We concede that teachers’ poor work environments due to underfunding and unreasonable workloads are problematic, but we are adamant that unfavourable work conditions must not entail unethical professional conduct. We hope this article will contribute to putting the situation of chronically ill and disabled schoolchildren in Sweden on the radar of Critical Disability Studies as well as in relevant fields of practice and that it might stimulate a change in public debate.
As teachers of disability studies, working with students from the health and psychological sciences, we tackle some of our pedagogical challenges and offer productive possibilities. We begin by introducing the offerings of disability studies and then consider our first question: how might we invite disability into our teaching? We introduce a Spanish tale – Por cuatro esquinitas de nada – that, while aimed at children and not explicitly engaged with a disability, permits us to engage in inter-textual analyses of disability. We find that students move through different stages of what we term distinction, idealisation and invisibility/concealment. We then address our second question – what does it mean to teach disability? We answer this with reference to the generative practices of two teaching methodologies: disposal and disavowal. We conclude the paper by considering the importance of generating critical theories of disability.
Technologies play vital roles in the learning and participation of autistic people and yet have mostly been conceptualised according to a medical model of disability. In this stakeholder review, the comments of 240 participants from a two-year seminar series focusing on autism and technology were analysed to co-construct an understanding of how research could develop more inclusively. Our socio-cultural analysis shows that stakeholders were very positive about the roles that technologies can play in many areas of life, but that these technologies need to be developed and evaluated according to the needs and preferences of autistic people and their families. We propose an inclusive common social framework for research based on the core themes of social inclusion, perspectives, and participation and agency. Such a framework requires the field to recognise that some current practices are exclusionary and that a commitment to action is needed in order to make positive changes.
This article presents the results of a survey on personal assistance (PA) for disabled people, conducted among PA users and members of the independent living movement in Europe. The survey was developed and implemented in the spirit of emancipatory disability research, and was informed by the social model of disability and the independent living philosophy. Participants were asked to assess a series of characteristics of PA in terms of their impact on users’ choice and control. Their responses help identify which characteristics of PA are considered to be enablers of choice and control, which characteristics are perceived as barriers and which characteristics elicit disagreement or lack of consensus among PA users and members of the independent living movement in Europe. Plans for using the results of the survey to develop a tool for evaluating PA schemes are also discussed.
The United Nations Disability Inclusion Strategy provides the foundation for sustainable and transformative progress on disability inclusion through all pillars of the work of the United Nations: peace and security, human rights, and development.
The Strategy enables the UN system to support the implementation of the Convention on the Rights of Persons with Disabilities and other international human rights instruments, as well as the achievement of the Sustainable Development Goals, the Agenda for Humanity and the Sendai Framework for Disaster Risk Reduction.
The Strategy includes a policy and an accountability framework, with benchmarks to assess progress and accelerate change on disability inclusion. The policy establishes a vision and commitment for the United Nations system on the inclusion of persons with disabilities.
The strategy is based on three over-arching approaches to achieve disability inclusion: twin track approach; intersectionality; and coordination
There are four core areas of responsibility: leadership, strategic planning and management; inclusiveness; programming; and organisational culture
Inclusion is positioned at the forefront of global educational reform. The study reported focused on a national Continuing Professional Development (CPD) programme for Inclusive Physical Education (IPE) in England. The research was designed to critically explore how CPD providers (i.e. tutors) variously conceptualised and practiced inclusion in the context of running a day-long CPD course for physical education teachers. Using qualitative methodology, data were collected via course observations (n= 27), informal interviews with tutors (n = 10), and a tutor questionnaire (n = 18). Findings suggest that although tutors’theoretical interpretations of inclusion were largely consistent with contemporary, broad understandings, there was notable variability and inherent tensions in the ways they talked about and enacted inclusion in practice. In many instances, inclusion was infused with particular perceptions about ability and ability grouping. Only a small number of tutors encouraged teachers to question and ‘disturb’ their current practices. Findings from this research extend insights into the contested nature of inclusion in contemporary PE and highlight the need for research to engage with multiple stakeholders in physical education teaching and CPD. This research reflects that CPD providers have a key role to play in extending teachers’ understandings of inclusive pedagogy
Within the current policy and legislative context of educating students with and without special educational needs (SEN) together in one classroom, the question that is frequently raised by educators relates to how best to implement inclusion and meet the different needs of their students in class. It is also important to understand all students’ perceptions about being included in regular classrooms. Therefore, the study examined secondary school students’ perceptions about the use of inclusive teaching practices by their different subject teachers. The main objective was to report on the psychometric properties of a newly developed questionnaire measuring students’ perceptions about their teachers’ use of inclusive teaching practices. A total of 665 secondary grade students rated the use of inclusive teaching practices for their two main subject teachers (German, Maths or English). The study found that the 14-item scale had high reliability (α = ranging 0.81 for German to 0.87 for English teachers) and consisted of two factors (‘Personalisation’ and ‘Differentiation’). According to the students’ perceptions, all subject teachers used some inclusive practices but they were not highly inclusive. A comparison showed that Maths teachers were more inclusive compared to their German counterpart. Implications for school educators and researchers are discussed.
The Salamanca Statement is a primary point of departure in research and policy on inclusive education. However, several problems have surfaced in the 25 years since its publication. In particular, several different interpretations of the concept of inclusive education and its enactment in practice have arisen. For instance, the definition of the pupil groups in focus varies greatly. There are also varying definitions of the importance of pupil-placement, when it comes to organisation of inclusive education. Using a theoretical framework combining Bacchi’s [1999. Women, Policy and Politics. The Construction of Policy Problems. London: Sage Publications] poststructural policy-analysis and concepts from Popkewitz [2009. “Curriculum Study, Curriculum History, and Curriculum Theory: The Reason of Reason.” Journal of Curriculum Studies 41 (3): 301–319. doi:10.1080/00220270902777021], this article illustrates that The Salamanca Statement allows for a variety of interpretations of inclusion. As a policy-concept, inclusion encompasses an amalgam of political ideals, including welfare-state ideals where education is viewed as a public-good, as well as market-ideals of education as a private-good. Policies of inclusion also define the desired citizen, through categories of disadvantaged children, the ones excluded but to be included for their own good as well as for the good of the future society. The conclusions are that researchers and policy-makers should elucidate what they mean by inclusion with for instance moral- and practical arguments rather than vague references to The Salamanca Statement.
While inclusion has generally been accepted as orthodoxy, a knowledge – practice gap remains which indicates a need to focus on inclusive pedagogy. This paper explores how teachers in the Republic of Ireland primary school were supported to develop inclusive pedagogy to meet the needs of learners with special educational needs (SEN). It is underpinned by a conceptual framework which combines an inclusive pedagogical approach and key principles of effective professional development (PD) arising from the literature, which informed the development of a professional learning community (PLC) for inclusive practice in a primary school. The impact of the PD on teachers’ professional practice was explored using an evidence-based evaluation framework. Analysis of interview and observation data evidenced that engagement with inclusive pedagogy in a PLC, underpinned by critical dialogue and public sharing of work, positively impacted teacher attitudes, beliefs, efficacy and inclusive practice. This research offers a model of support for enacting inclusive pedagogy.
This paper draws upon education policy sociology, and sport coaching literature, in critically examining sport coaches as policy actors. Stephen Ball and colleagues’ conceptualisation of different policy actor positions and roles provided the framework for research that investigated how eight professional swimming coaches in Victoria, Australia, interpreted and enacted disability and inclusion policy. A discourse analysis of semi-structured interviews with the eight coaches reveals the complexities associated with how and why different coaches interpret and enact disability and inclusion policy imperatives in different ways in their specific club contexts. Data are presented that shows coaches adopting multiple and hybrid policy actor positions and roles as disability and inclusion policy was interpreted, translated and ultimately, expressed as pedagogic rules and practices. Our discussion brings to the fore questions about power, agency and control in coaching, while highlighting both limits and possibilities for the enactment of inclusive disability sport policies by swimming coaches working in Victoria, Australia. In conclusion we suggest that this research illustrates that coaches are capable of enacting social change, and have some agency to do so, but at the same time appear constrained by established discourses that shape policy and give important direction to pedagogic practice. We advocate that further in-depth research is required into the coaching policy-practice nexus, particularly as it relates to the advancement of equity and inclusion.
Aim: To conduct a detailed investigation into changes in activity limitations and participation restrictions over 10 years in people with mild, moderate and severe multiple sclerosis.
Methods: This study was a 10-year longitudinal study of 264 people with multiple sclerosis living in Stockholm County, Sweden. Ten-year changes in personal and instrumental activities in daily living were assessed using the Katz Activities in Daily Living Index Extended and participation in social/lifestyle activities using the Frenchay Activities Index.
Results: While people with moderate multiple sclerosis, compared to baseline, demonstrated significantly higher proportions of dependency in most activities of personal and instrumental activities in daily living at the 10-year follow-up, the mild group primarily increased their dependency in instrumental activities and the severe group in personal activities. Significantly higher proportions of the moderate group showed restricted participation in domestic and outdoor activities whereas the mild group only showed restrictions in a few domains of participation. A majority of people with severe multiple sclerosis showed restricted participation in all social/lifestyle activities at baseline and the 10-year follow-up.
Conclusions: Prominent long-term increases in activity limitations and participation restrictions occurred across the spectrum of disease severity but was most pronounced in those more moderately affected.
n the 1970s, grassroots disability movements in many countries changed the thinking around disability and disability politics. Nonetheless, they were also part of larger political upheavals in the western world. How were they inspired by the socialist, feminist, and gay and lesbian movements? In addition, how did they relate to non-disabled allies? Organisations in Denmark and Sweden are investigated and compared to early disability-rights movements in the United Kingdom. Independently of each other, all groups developed materialist models, although only in Sweden and the United Kingdom did this lead to a linguistic distinction between ‘impairment’ and ‘disability’. Danish activists would rather use provocative language, while developing a social understanding of disability. They were also the only ones to discuss gender and sexuality. There are more similarities than differences between the movements, although the Danish specificities contributed to improvements in how Danes with disabilities can develop a positive sex life.
- In the 1970s, new political ideas grew about ways of living, equality between the sexes, gay and lesbian rights, and sexual freedom. New groups started to talk about how to understand disability.
- This article investigates whether the new disability groups in Denmark and Sweden talked about these ideas and whether they involved non-disabled people.
- Danish and Swedish disability groups are compared to early disability rights organisations in the United Kingdom. The Danish and Swedish disability groups were more open to non-disabled members than groups in the United Kingdom.
- The article also found that the Danish group discussed sexuality a lot. In Sweden and the United Kingdom, the disability groups did not talk about sex at all.
Purpose: To compare family and functional outcome in infants at very high risk of cerebral palsy, after receiving the family centred programme “Coping with and Caring for infants with special needs (COPCA)” or typical infant physiotherapy.
Materials and methods: Forty-three infants at very high risk were included before 9 months corrected age and randomly assigned to one year COPCA (n = 23) or typical infant physiotherapy (n = 20). Family and infant outcome were assessed before and during the intervention. Physiotherapy intervention sessions were analysed quantitatively for process analysis. Outcome was evaluated with non-parametric tests and linear mixed-effect models.
Results: Between-group comparisons revealed no differences in family and infant outcomes. Within-group analysis showed that family’s quality of life improved over time in the COPCA-group. Family empowerment was positively associated with intervention elements, including “caregiver coaching.”
Conclusions: One year of COPCA or typical infant physiotherapy resulted in similar family and functional outcomes. Yet, specific intervention elements, e.g., coaching, may increase empowerment of families of very high risk infants and may influence quality of life, which emphasizes the importance of family centred services.
Purpose: The purpose of this scoping review was to explore the literature on experiences and perspectives of patients with hip fractures and their caregivers during transitions in care.
Methods: Seven databases were searched for studies published between 1 January 2000 and 3 July 2018. Grey literature was also searched.
Results: Eleven articles met the inclusion criteria. The scoping review found that patients and caregivers encounter several challenges during care transitions including the following: lack of information sharing, role confusion and disorganized discharge planning. Common suggestions reported in the literature for improving care transitions were: increasing written communication, offering a patient representative role, using technology for knowledge dissemination and increasing geriatrician involvement.
Conclusions: The results of this scoping review provide a useful foundation from which to build strategies to address challenges such as lack of information sharing, role confusion and disorganized discharge planning experienced by patients and caregivers during care transitions. Further research needs to explore the development of strategies to promote patient-centered care especially during discharge from an acute care facility.
Purpose: Restrictions to activity and participation in persons with cerebral palsy or spina bifida are often due to both motor and executive dysfunction. Hence methods focusing solely on motor issues are not enough to enhance participation. The Cognitive Orientation to daily Occupational Performance ApproachTM is a performance-based approach offering clients opportunities to create their own strategies to learn skills. The aim of the present study was to explore and describe experiences of the Cognitive Orientation to daily Occupational Performance Approach as reported by young adults with cerebral palsy or spina bifida.
Methods: Qualitative content analysis was used. Semi-structured individual interviews were conducted with the 10 participants aged 16–28, post-intervention and at 6-months follow-up.
Results: The participants described how the Cognitive Orientation to daily Occupational Performance Approach enhanced their self-efficacy. Four categories describing the participants’ experiences emerged: “CO-OP is a different way of learning”, “CO-OP sometimes puts a strain on me”, “CO-OP supports my way of thinking and doing” and “CO-OP boosts me”.
Conclusion: The young adults expressed that the Cognitive Orientation to daily Occupational Performance intervention, although sometimes challenging, was worth the effort because it provided them with an opportunity to master everyday-life problems by using meta-cognitive thinking, which enhanced their self-efficacy.
Purpose: Participation in activities of everyday life is seen as main goal of rehabilitation after a stroke and return to work is an important factor to consider for the substantial number of persons having a stroke at working age. The current study aims to investigate whether returning to work would predict self-perceived participation and autonomy in everyday life after a stroke, from a long-term perspective.
Materials and methods: Persons with first-ever stroke at age 18–63 years in 2009–2010, Gothenburg, were included. As 5-year follow-up, the Impact on Participation and Autonomy questionnaire was sent out, investigating self-perceived participation/autonomy in five levels, and work status was investigated from national sick-absence registers. Prediction of work on participation/autonomy was investigated with logistic regression.
Results: A total of 109 participants (49%) responded to the questionnaire. The majority (69–94%) perceived very good participation/autonomy in all domains and 59% were working 5 years after stroke. Working was a significant predictor of high participation/autonomy in all domains of the questionnaire.
Conclusions: Being able to return to work after a stroke seems to be important for self-perceived participation/autonomy. This emphasizes the importance of work-oriented information and rehabilitation after a stroke at working age.
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