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Women’s experiences of living with albinism in Taiwan and perspectives on reproductive decision making: A qualitative study

HUANG, Mei-Zen
CHEN, Li-Li
HUNG, Shu-Ling
PUTHUSSERY, Shuby
2020

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People with Albinism tend to face multiple adverse physical, psychological and social consequences. Very little is known about experiences of women with Albinism and their deliberations whilst making reproductive decisions. This study aimed to explore lived experiences of women with Albinism and to understand their perspectives on reproductive decision making. Qualitative in-depth semi-structured interviews were conducted with ten women with Albinism in Taiwan. Five key themes emerged from the accounts which were centred around the sense of discrimination that they felt whilst growing up, their strive for normality, making difficult choices in their reproductive decisions, desire to protect children from harm and reflections of parenting struggles from own experiences and the experiences of their parents. We call for global and national policy makers and practitioners to introduce explicit measures to challenge the myths, stereotypes and prejudices associated with Albinism including specific interventions towards supporting women in pregnancy decision making.

Teaching for inclusion – a review of research on the cooperation between regular teachers and special educators in the work with students in need of special support

PAULSRUD, David
NILHOLM, Claes
2020

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This article presents a review of qualitative research on interprofessional cooperation between regular teachers and special educators published from 2005 to 2019. The aim of the review was to gain knowledge about how different forms of cooperation take shape and about factors at multiple levels that facilitate or constrain cooperation as a means of achieving inclusion. In total, 25 studies were selected. The results are discussed in relation to Thomas Skrtic’s theory of bureaucracies within the school organisation in order to compare and analyse different forms of interprofessional cooperation and schools’ organisations of special educational work. Cooperative teaching, special educational consultations and mixed forms of cooperation were found to entail different benefits and challenges related to communication and the cooperating actors’ roles. Facilitating factors included personal chemistry, an equal distribution of power and responsibilities and support from the school management through provision of professional development and adequate planning time. In several studies, a flexible cooperation was argued to be hindered by curricular constraints and standardised testing. Education policy is therefore emphasised in this review as important for understanding the conditions under which school staff are responsible for inclusion.

Do both ‘get it right’? Inclusion of newly arrived migrant students in Swedish primary schools

TAJIC, Denis
BUNAR, Nihad
2020

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The aim of this article is to advance knowledge on how Swedish primary schools organise education and what strategies they deploy to ensure inclusion and attainment of newly arrived migrant students. The article is based on semi-structured interviews with 30 teachers and school administrators, and one-year of fieldwork undertaken in two multicultural urban primary schools in the Stockholm region. One of the schools initially places students in separate classes, while the other one places them directly into mainstream classes. Both are evoking inclusion and attainment as a reason for using their respective models. As such, do both ‘get it right’? Using inclusion as the theoretical and conceptual framework this article addresses the broader question: How is the meaning of inclusion constructed in the processes of its practical implementation in these two schools? The results show the ambitious tale of inclusion in both schools was, in the process of the construction of its meaning and implementation, reduced to some of its aspects. Teachers and school administrators are allowed to include or leave out of their model whatever they deem necessary, obsolete, expensive or unrealistic and still fitting under the umbrella of inclusion. Sometimes it works, sometimes it does not, and both schools ‘get it right’ and ‘wrong’ in some aspects.

The case for investing in assistive technology

ATscale
November 2020

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In this new report, ATscale describes the enormous gains that access to assistive technology (AT) can have in health, for the community and the economy. The figures are dramatic: investment in the provision of four assistive products - hearing aids, prostheses, eyeglasses, and wheelchairs - will result in a return on investment of 9:1.

Having access to AT can make the difference between failure or success in school, between a job or unemployment, between a life of opportunity or a life of dependency. An example: for a child in a low- or middle-income country, access to AT can make a difference of $100,000 in lifetime income.

Altogether, providing AT to all who need it would yield more than USD 10 trillion in economic benefits over the next 55 years.

Investing in AT both has a transformative impact on people’s wellbeing and makes sound economic sense for funders and governments. 

Training for the HandbikeBattle: an explorative analysis of training load and handcycling physical capacity in recreationally active wheelchair users

KOUWIJZER, Ingrid
VALENT, Linda J M
BENNEKOM, Coen A M van
HANDBIKEBATTLE group
POST, Marcel W M
WOUDE, Lucas H V Van Der
GROOT, Sonja de
November 2020

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Purpose: (1) to analyze training characteristics of recreationally active wheelchair users during handcycle training, and (2) to examine the associations between training load and change in physical capacity.

 

Methods: Former rehabilitation patients (N = 60) with health conditions such as spinal cord injury or amputation were included. Participants trained for five months. A handcycling/arm crank graded exercise test was performed before and after the training period. Outcomes: peak power output per kg (POpeak/kg) and peak oxygen uptake per kg (VO2peak/kg). Training load was defined as Training Impulse (TRIMP), which is rating of perceived exertion (sRPE) multiplied by duration of the session, in arbitrary units (AU). Training intensity distribution (TID) was also determined (time in zone 1, RPE ≤4; zone 2, RPE 5–6; zone 3, RPE ≥7).

 

Results: Multilevel regression analyses showed that TRIMPsRPE was not significantly associated with change in physical capacity. Time in zone 2 (RPE 5–6) was significantly associated with ΔVO2peak, %ΔVO2peak, ΔVO2peak/kg and %ΔVO2peak/kg.

 

Conclusion: Training at RPE 5–6 was the only determinant that was significantly associated with improvement in physical capacity. Additional controlled studies are necessary to demonstrate causality and gather more information about its usefulness, and optimal handcycle training regimes for recreationally active wheelchair users.

"Autism is me": an investigation of how autistic individuals make sense of autism and stigma

BOTHA, Monique
DIBB, Bridget
FROST, David M
2020

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There are many different perspectives for understanding autism. These perspectives may each convey different levels of stigma for autistic individuals. This qualitative study aimed to understand how autistic individuals make sense of their own autism and experience the stigma attached to autism. The study used critical grounded theory tools. Participants (N1⁄420) discussed autism as central to their identity, and integral to who they are. While participants thought of autism as value neutral, they expressed how society confers negative meanings onto autism, and thus, them. The findings also indicate that different understand- ings of autism confer different levels of stigma. Participants expressed constant exposure to stigma and managed this stigma in different ways. Such methods included reframing to more positive understandings of autism, the reclamation of language, and using concealment and disclosure stra- tegically. The implications of these findings are discussed further in the article.

Disability inclusion in the United Nations system - Report of the Secretary General

SECRETARY-GENERAL OF THE UNITED NATIONS
October 2020

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When launching the Strategy in June 2019, the Secretary-General stated that the United Nations would lead by example and raise its standards and performance on disability inclusion across all pillars of its work, from Headquarters to the field. The present report outlines the first steps on the path to achieving transformative and lasting change for persons with disabilities across the United Nations system

 

The report is organized into seven sections. Following the introduction, an overview of the advances made in the United Nations on disability inclusion, including the adoption of the Strategy, is provided in section II; the first year of implementation of the Strategy at the entity and country levels is reported on in section III; coronavirus disease (COVID-19) response and recovery efforts are the focus of section IV; the overarching actions for implementation of the Strategy are considered in section V; challenges and opportunities are highlighted in section VI; and the conclusion and recommendations for consideration by the General Assembly are contained in section VII. The report provides an analysis of information from 57 United Nations entities1 that reported under the Strategy ’s entity accountability framework and seven United Nations country teams that completed the accountability scorecard on disability inclusion as part of a targeted roll-out.

A country report: impact of COVID-19 and inequity of health on South Korea’s disabled community during a pandemic

LEE, Seungbok
KIM, Jongbae
2020

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The South Korean media boasts of its leading success–during the escalation of the coronavirus outbreak–in flattening of the curve thereby mitigating the grave outcomes of the public health crisis. Much of the success is reportedly attributed to the rapid and advanced development of test kits, essential equipment and implementation of protocols in precautionary measures. However, it has been an arduous task to stay afloat for one particular vulnerable community. The disabled citizens of Korea were confronted by the realities of health inequity during this disastrous period. Pre-existing the pandemic onset, the disabled community have faced stigmatization and under many circumstances de-prioritization by their own society. Through the lense of a visiting physician, my hope is to poignantly and respectfully share personal experiences and thoughts on these realties impacted by the COVID-19 pandemic in South Korea.

Employment of young people with mental health conditions: making it work

SUBRAMANIAM, Mythily
ZHANG, Yunjue
SHAHWAN, Shazana
VAINGANKAR, Janhavi Aijt
SATGHARE, Patrika
LIN TEH, Wen
ROYSTONN, Kumarasan
MING JANRIUS GOH, Chong
MANIAM, Yogeswary
LIANG TAN, Zhuan
TAY, Benjamin
VERMA, Swapna
ANN CHONG, Siow
2020

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Purpose: The current study was undertaken to understand and describe the meaning of work as well as the barriers and facilitators perceived by young people with mental health conditions for gaining and maintaining employment.


Materials and Methods: Employing a purposive and maximum variation sampling, 30 young people were recruited and interviewed. The respondents were Singapore residents with a mean age of 26.8 years (SD 1⁄4 4.5, range 20–34years); the majority were males (56.7%), of Chinese ethnicity (63.3%), and employed (73.3%), at the time of the interview. Verbatim transcripts were analysed using inductive the- matic analysis.

 

Results: Three global themes emerged from the analyses of the narratives, which included (i) the mean- ing of employment, (ii) barriers to employment comprising individual, interpersonal and systemic difficul- ties and challenges participants faced while seeking and sustaining employment and (iii) facilitators of employment that consisted of individual and interpersonal factors that had helped the young persons to gain and maintain employment.

 

Conclusions: Stigma and discrimination emerged as one of the most frequently mentioned employment barriers. These barriers are not insurmountable and can be overcome both through legislation as well as through the training and support of young people with mental health conditions.

Special education reforms in Ireland: changing systems, changing schools

KENNY, Neil
MCCOY, Selina
MIHUT, Georgiana
2020

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Ireland has a distinct and complex history regarding the education of persons with special educational needs (SEN) and in its approach to inclusion. Special and general education largely developed in parallel and separately. As recently as the 1990s, legal actions by parents seeking educational rights for children with severe disabilities prompted appropriate provision for these students and a shift towards inclusive schools. The Education for Persons with Special Educational Needs (EPSEN) Act set out important changes – although not all implemented – followed by a series of changes in resource allocation, culminating in the removal of the requirement for students to be diagnosed in order to access supports. International evidence suggests that resource allocation based on learners’ profile and SEN diagnosis have been linked to the overidentification of SEN students. Ability to pay for private assessments has also been shown to exacerbate inequality in Ireland and beyond. We examine how Ireland's policy changes are impacting on schools and students, drawing on emerging evidence. We consider concerns over the adequacy of teacher professional development, the intended and potentially unintended consequences from a process of ‘domestication’ at the school level and ultimately whether the changes are accompanied by sufficient and appropriate accountability measures.

Differentiation and individualisation in inclusive education: a systematic review and narrative synthesis

LINDNER, Katharina-Theresa
SCHWAB, Susanne
2020

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This study integrates research about differentiation and individualisation in inclusive education since the UN Convention on the Rights of Persons with Disabilities in 2006 (United Nations, 2006). The concept of inclusive education for all learners increases the requirement for teachers to create educational spaces that encourage stimulating teaching and learning processes. Accordingly, a methodological shift from the traditional ‘one-size-fits-all’ model to individualised teaching and learning offers a starting point for educational equity. The aim of this paper is to investigate the progress of differentiated and individualised teaching practices in inclusive classroom settings considering collaboration and teamwork, instructional practices, organisational practices and social/emotional/behavioural practices (see Finkelstein, Sharma, & Furlonger, 2019. “The Inclusive Practices of Classroom Teachers: A Scoping Review and Thematic Analysis.” International Journal of Inclusive Education, 1–28). Results of a criteria-based review considering papers from 2008 to December 2018 encompass 17 articles that were included in the narrative synthesis. Results indicated that the following aspects are characteristic of inclusive education: collaboration and co-teaching, grouping, modification (of assessment, content, extent, instruction, learning environment, material, process, product and time frame), individual motivation and feedback, and personnel support of students. Implications of the findings and gaps in the research have been outlined.

Inclusion, access, and accessibility of educational resources in higher education institutions: exploring the Ethiopian context

BEYENE, Wondwossen Mulualem
MEKONNEN, Abraham Tulu
GIANNOUMIS, George Anthony
2020

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The right of persons with disabilities for equal access to education and educational resources is enshrined by international and country-specific anti-discrimination laws. Taking the Ethiopian context as an example, this paper sought to identify barriers of access to educational resources and explored ways for removing them. Seventeen students with visual impairments studying at Hawassa University were selected for semi-structured interviews. Moreover, five individuals working at the disability centre and the university library were interviewed. The results of the interviews were analysed thematically using the International Classification of Functioning, Disabilities and Health (ICF) as a framework. Access and accessibility problems that emanate from the learners’ diverse background, lack of educational resources in alternative formats, lack of institutional tools (policy, procedure, guidelines, etc.) to bridge the gap between law and practice, and the digital divide were among the problems identified and discussed. At the end, the paper showed how libraries, revitalised as learning and information commons, could help to ensure the accessibility of educational resources and help learners with disabilities to acquire skills that may help them in their studies and their future undertakings.

Rehabilitation: mobility, exercise & sports; a critical position stand on current and future research perspectives

VAN DER WOUDE, Lucas H V
HOUDIJK, Han J P
JANSSEN, Thomas W J
SEVES, Bregje
SCHELHAAS, Reslin
2020

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Background: Human movement, rehabilitation, and allied sciences have embraced their ambitions within the cycle of “RehabMove” congresses over the past 30 years. This combination of disciplines and collabo- rations in the Netherlands has tried to provide answers to questions in the fields of rehabilitation and adapted sports, while simultaneously generating new questions and challenges. These research questions help us to further deepen our understanding of (impaired) human movement and functioning, with and without supportive technologies, and stress the importance of continued multidisciplinary (inter)national collaboration.

 

Methods: This position stand provides answers that were conceived by the authors in a creative process underlining the preparation of the 6th RehabMove Congress.

 

Results: The take-home message of the RehabMove2018 Congress is a plea for continued multidisciplin- ary research in the fields of rehabilitation and adapted sports. This should be aimed at more individual- ized notions of human functioning, practice, and training, but also of performance, improved supportive technology, and appropriate “human and technology asset management” at both individual and organ- ization levels and over the lifespan.

 

Conclusions: With this, we anticipate to support the development of rehabilitation sciences and technol- ogy and to stimulate the use of rehabilitation notions in general health care. We also hope to help ensure a stronger embodiment of preventive and lifestyle medicine in rehabilitation practice. Indeed, general health care and rehabilitation practice require a healthy and active lifestyle management and research agenda in the context of primary, secondary, and tertiary prevention.

Segregated education as a challenge to inclusive processes: a total population study of Swedish teachers’ views on education for pupils with intellectual disability

GÖRANSSON, Kerstin
BENGTSSON, Karin
HANSSON, Susanne
KLANG, Nina
LINDQVIST, Gunilla
NILHOLM, Claes
2020

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Many pupils with disabilities receive schooling in segregated contexts, such as special classes or special schools. Furthermore, the percentage of pupils educated in segregated settings has increased in many European countries. Studies suggest that there is high commitment to the general ideology of inclusive education among teachers in ‘regular’ education in many countries. This survey study investigates the views of teachers in segregated types of school about education. A questionnaire was sent out, in 2016, to all Swedish teachers (N = 2871, response rate 57.7%) working full time in special classes for pupils with intellectual disability (ID). On a general level results show that there is a strong commitment to preserving a segregated school setting for pupils with ID, a limited desire to cooperate with colleagues from ‘regular schools’ and a view that schooling and teaching are not quite compatible with the idea of inclusive education. The results highlight the importance of investigating processes of resistance within segregated schools to the development of inclusive schools and education systems. We argue that, while research and debate about inclusive education are important, both are insufficient without analyses of existing types of segregated schooling.

Understanding paid support relationships: possibilities for mutual recognition between young people with disability and their support workers

ROBINSON, Sally
GRAHAM, Anne
FISHER, Karen R
NEALE, Kate
DAVY, Laura
JOHNSON, Kelley
HALL, Ed
2020

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The quality of paid relationships is key for effective support, yet little is known about how people receiving and providing sup- port understand and experience the relationship. This paper reports on recent research that explored the role of relationships with paid support workers in strengthening the rights and well- being of young people with cognitive disability in Australia. The research used photo-rich participatory methods with 42 pairs of young people and their support workers and drew on Honneth’s recognition theory to specifically explore experiences of being valued, respected and cared about in their work together. The findings point to the importance of these con- nected aspects of recognition in paid support relationships, highlighting both the presence and absence of these, as well as experiences of misrecognition. The implications of recognition for strengthening support need close consideration in an inter- national context characterised by personalisation of support, resource constraints and inquiries into poor practice.

Dimensions of invisibility: insights into the daily realities of persons with disabilities living in rural communities in India

GUPTA, Shivani
DE WITTE, Luc P
MEERSHOEK, Agnes
2020

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Persons with disabilities in rural India do not have the opportunity to lead a self-determined life and be included in their community as required by the convention on the rights of persons with disabilities. To investigate their experience of living everyday life and the amount of agency they are able to exercise, in-depth interviews were undertaken. The Capability Approach (CA) was used to ana- lyse the situation that was seen in terms of outcome of the interplay between internal and external factors resulting in loss of agency. The results show that the dependency they experience due to lack of adequate support to undertake activities and being completely dependent on the family places them in a vicious circle of ‘self-worthlessness’. Reducing the dependency disabled people face and chang- ing perceptions of the community towards disability may break this circle.

The social and human rights models of disability: towards a complementarity thesis

LAWSON, Anna
BECKETT, Angharad E
2020

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This article aims to reorient thinking about the relationship between the long-standing social model of disability and the rapidly emerging human rights model. In particular, it contests the influential view that the latter develops and improves upon the former (the improvement thesis) and argues instead that the two models are complementary (the complementarity thesis). The article begins with a discursive analysis of relevant documents to investigate how each of the two models has been used in the crafting and monitoring of the UN Convention on the Rights of Persons with Disabilities. This highlights the increasing importance of the human rights model in this policy context. It also provides examples of the operation of the two models which inform the remainder of the discussion. We then critique the comparisons between the models which underpin the improvement thesis; and, drawing on Foucault’s technologies of power and Beckett and Campbell’s ‘oppositional device’ methodology, deepen and develop this comparative analysis. The result, we argue, is that the two models have different subjects and different functions. In the human rights context, their roles are complementary and supportive.

Fragmented yet together: the disability movement in Sierra Leone

VAN DEN BRINK, Amélie
ELBERS, Willem
IBRAHIM, Aisha Fofana
2020

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The on-going struggles of disability movements worldwide have been examined from multiple perspectives. As of yet, however, research into this topic has largely overlooked experiences on the African continent. This article seeks to address this gap by presenting a case study of the disability movement in Sierra Leone, West Africa. The study finds that on the one hand the Sierra Leonean disability movement is fragmented (referring to the tendency of groups to work individually as opposed to operating in a collective manner), thus limiting synergy. Three main ‘centrifugal’ forces underlying fragmentation are identified: resource scarcity, impairment specific interests and capacity differences between impairment types. On the other hand, the movement somehow manages to survive and even achieve modest successes. The research shows that interdependence, shared experiences of marginalization, and a clear identification of the ‘other’ have a unifying effect.

  • The disability movement in Sierra Leone is fragmented, meaning it struggles to formulate a unified position and act collectively, yet somehow survives and even manages to achieve some successes;
  • The fragmentation is fueled by competition between groups, a hierarchy between impairment types and interests that are impairment specific.
  • The movement is kept together by mutual dependence to achieve key goals and raise funds, shared experiences of marginalization and negative experiences with ‘outsiders’.
  • The research offers recommendations to disability groups and donors to mitigate fragmenting forces while strengthening unifying forces.

Loneliness in life stories by people with disabilities

TARVAINEN, Merja
2020

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This study investigates loneliness in life stories by people with disabilities. By approaching loneliness from a relational perspective, this study attempts to illustrate how loneliness and disability are intertwined in the life course. The research question was as follows: How do people with disabilities understand loneliness in their life stories? Life story data ‘Life of Disabled Persons in Finland 2013–2014’ was analysed with a narrative life course approach. Loneliness was narrated in accordance with normative life course expectations. People with disabilities narrated loneliness as unbelonging in childhood, disjointed youth and disaffiliation to normative institutions in adulthood. This study suggests that relation between loneliness and disability concern the conditions of inclusion that is the conditions of living and telling.

  • Loneliness involves both unwanted emotions and social isolation. 
  • In many societies, both loneliness and disability bear a stigma. This so-called double stigma affects the lives of people with disabilities.
  • This study explores loneliness and disability in life stories by people with disabilities in Finland from a life course perspective. Although scholars have widely studied loneliness in Finland, they have not studied loneliness in people with disabilities in any great depth.
  • Loneliness in life stories by people with disabilities was narrated in relation to a sense of bodily difference and occurred as a disconnection from a socially ‘standard’ life course. Loneliness was located within three main phases: childhood, youth and adulthood. Negative attitudes towards disability feed social isolation and emotional loneliness.
  • Further research on disability and loneliness throughout the life course as well as more discussion about the conditions of inclusion and the emotional patterns of social relations are needed.

Environmental pre-requisites and social interchange: the participation experience of adolescents with autism spectrum disorder in Zurich

KRIEGER, Beate
PISKUR, Barbara
SCHULZE, Christina
BEURKENS, Anna
MOSER, Albine
May 2020

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Aim: Participation of adolescents with autism spectrum disorder hardly occurs in settings outside of home and school. Little is known about how their participation is influenced by environmental factors. This study explored how and why adolescents with autism spectrum disorder perceive aspects of their environment as facilitators or barriers to their participation outside of home and school.

 

Method: This explanatory case study explored the participation experiences of adolescents with autism spectrum disorder (15–21 years) from Zurich and surroundings with in-depth interviews and photo-elicitation, using photos made by the participants during activities outside of home and school. Data was analysed with a 7-step procedure.

 

Result: The presence of two main themes seemed necessary to facilitate participation outside of home and school: “environmental prerequisites to attend activities”, which consists of five subthemes, such as “the company of trusted persons” and “the provision of knowledge and information”, and “social interchange and engagement”, which consists of three subthemes and describes how actual involvement can be supported.

 

Conclusion: Our findings highlight the influence of trusted persons on adolescents with autism spectrum disorder, and the need to extend the support network for these adolescents to other individuals, services and society so that their participation in activities can be encouraged.

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