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Lives turned upside down in COVID-19 times: exploring disabled people's experiences in 5 low-and-middle income countries using narrative interviews

WICKENDEN, Mary
SHAW, Jackie
THOMPSON, Stephen
ROHWERDER, Brigitte
2021

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This article explores COVID-19 related experiences of disabled people in Bangladesh, Kenya, Nigeria, Nepal and Uganda. Narrative interviews generated storied responses, focussing on respondents' priorities, which enabled us to hear what was most significant for them and their families. 143 interviews were conducted online or by phone by 7 local researchers (3 disabled), with appropriate inclusive support. Nearly everyone was interviewed twice to capture the progression of impacts over time. The data was analysed thematically through a virtual participatory approach. An overarching 'subjective' theme of feelings experienced by the participants was labelled 'destabilisation, disorientation and uncertainty'. We also identified 'concrete' or material impacts. People experienced various dilemmas such as choosing between securing food and keeping safe, and tensions between receiving support and feeling increased vulnerability or dependence, with interplay between the emotions of fear, loss and hope. We found both the concept of liminality and grief models productive in understanding the progression of participants' experiences. Disabled people reported the same feelings, difficulties and impacts as others, reported in other literature, but often their pre-existing disadvantages have been exacerbated by the pandemic, including poverty, gender and impairment related stresses and discrimination, inaccessible services or relief, and exclusion from government initiatives.

Do personal assistance activities promote participation in society for persons with disabilities in Sweden? A five-year longitudinal study

VON GRANITZ, Heléne
SONNANDER, Karin
REINE, Ieva
WINBLAD, Ulrika
2021

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Purpose: To explore whether the personal assistance (PA) activities provided by the Swedish Act concern- ing Support and Service for Persons with Certain Functional Impairment in 2010 and 2015 promote par- ticipation in society according to Article 19 of the United Nations’ Convention on the Rights of Persons with Disabilities (UNCRPD).

 

Methods: Register data and data from two questionnaires were used (N1⁄42565). Descriptive statistics and chi-square (McNemar’s test) were used to describe the basic features of the data. Mixed binominal logistic regression was used to examine correlation between gender and hours of PA between 2010 and 2015.

 

Results: Despite an increase in the number of PA hours, more care activities and a reduction of most PA activities representing an active life were found. The result was especially evident for women, older peo- ple, and for a particular person category.


Conclusions: The results offer evidence of a shift to a medical model and indicate a risk of social exclu- sion due to fewer activities representing an active life. An increase on average of 16h of PA over the period studied does not guarantee access to an active life and may indicate a marginal utility. The noted decline of PA for participation in society enhances the importance of monitoring content aspects to fulfil Article 19 of the UNCRPD.

Social classroom climate and personalised instruction as predictors of students’ social participation

ZURBRIGGEN, Carmen L A
HOFMANN, Verena
LEHOFER, Mike
SCHWAB, Susanne
2021

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Previous research has repeatedly confirmed that students with special educational needs (SEN) are generally less accepted by their peers. Although inclusive teaching strategies and classroom characteristics are frequently hypothesised to improve students’ social participation, empirical evidence is scarce. Therefore, the purpose of this paper is to investigate classroom characteristics and teaching practices that can help foster social participation, in general, and reduce the effect of lower social participation among students with SEN, in particular. The sample includes 518 students in 31 Grade 4 and 7 classes from Austria, of whom 99 are students with SEN. The results show that students with SEN receive fewer peer nominations and perceive their social participation to be lower compared to their peers without SEN. However, the association between SEN and self-perceived social participation is moderated by the social classroom climate, i.e. the difference becomes smaller when the social classroom climate is more positive. Furthermore, the higher the personalised instruction was rated by a student, the higher was his or her social status. The results suggest that interventions should focus not only on the improvement of individual students (with SEN) but also on changing the whole classroom environment.

Greek Secondary Education Teachers’ Views on Inclusive Education of People with Intellectual Disabilities

GIAVRIMIS, Panagiotis
2021

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Purpose: This paper aimed to investigate Greek secondary education teachers’ views on people with intellectual disabilities, their inclusion in the typical educational system, and the dimensions of social and educational exclusion that may be associated with it.

 

Method: The qualitative research design involved semi-structured interviews with 18 Greek secondary school teachers.

 

Results: It was revealed that people with intellectual disabilities face educational exclusion for two reasons. The first is because the structure of the education system itself cannot meet their increased needs, and the second is due to the fact that a percentage of secondary education teachers feel negative about their inclusion in the typical education system.

 

Conclusion and Implications: The implemented policy for the co-education of people with intellectual disabilities in Greece is not effective due to endogenous difficulties. It is necessary to orient the educational policy towards an education for all without "filters" of social exclusions.

Mixed-Methods Programme Evaluation of Disability Equality Training (DET) in Mongolia

Higashida, Masateru
Gereltuya, Ganbayar
Altanzul, Gantaikhuu
2020

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Purpose: An evaluation of a disability equality training (DET) programme, based on the social model of disability, was conducted to explore the changes in the participants’ attitudes and behaviours in Ulaanbaatar, Mongolia.

 

Methods: This study is composed of two parts. First, the participants’ attitude changes during DET sessions were examined through a descriptive quantitative and qualitative analysis of questionnaires and related documents. Second, thebehavioural changes at the organisational and individual levels, the impact on society, and related factors were explored by quantitative and qualitative analysis of good practice cases: 39 participants were selected through purposive sampling and semi-structured interviews were conducted.

 

Results: It was found that most participants adopted the social model perspective within these sessions. A qualitative content analysis of the good practice cases also found that the majority of participants attempted to change their social environments after the sessions. Thematic analysis identified promotional factors, such as within-organisation dynamics and compatibility and barriers at the individual and organisational levels, which were associated with participants’ behaviours after DET sessions.

 

Conclusion: The implications of these findings are discussed in connection with the strategic implementation of DET to promote disability-inclusive development. Future studies should examine the effectiveness of a strategy by considering the factors identified in this study and by using a reliable sample in various settings where DET sessions are conducted.

Disability, stigma & the role of innovation - Disability innovation live

AUSTIN, Vicki
CAREW, Matthew
MIRZOYANTS, Anastasia
BARBARESCHI, Giulia
August 2020

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This webinar focussed on the role of stigma in preventing disability inclusion, and what enables it to be overcome, focused on innovative and creative methods

The speakers talked about:

  • Culture, Paralympic legacy & how innovation can change mindsets
  • Stigma research incorporating the perspectives of persons with disabilities & disability inclusive research processes
  • Kenyan youth & the perception of people with disabilities
  • Assistive technology, identity & the role of innovation

Representation and methods of normalisation: Narratives of disability within a South African tertiary institution

DEVAR, Teagan
BOBAT, Shaida
REUBEN, Shanya
July 2020

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Background: The manner in which disability is understood influences how individuals within a society, its institutions, policies and structures are able to accommodate and support people with disabilities (PWD) (Kaplan 2000). Understanding how students with disabilities (SWD) within a higher education context perceive and experience disability as well as how key players, namely, lecturers and disability unit (DU) staff, who influence that experience, is important in further shaping policy and providing a truly inclusive environment for all within HEIs.

 

Objectives: The study aimed to examine the narratives of disability among SWD, lecturers and the DU within a tertiary institution, with a view to better understand their experiences and required initiatives to address the challenges of disability within a higher tertiary institution.

 

Method: The study drew on three theoretical frameworks: social constructionism, feminist disability theory and the Foucauldian perspective. Data for the study were collected through in-depth semi-structured interviews with 12 SWD, seven members of staff from the institution’s DU and five lecturers from within the School of Applied Human Sciences. Data were analysed using thematic analysis.

 

Results: The findings suggested that in spite of both facilitating and positive representations of disability, the dominant representation of disability was perceived as challenging and as a result, disempowering. Students with disabilities were found to adapt, and consequently modify their behaviour by disassociating from their disability in order to fit in.

 

Conclusion: The study highlights the need for creating spaces and engagement within an HEI context that both challenge negative discourses of disability, and at the same time, promote positive representations of disability.

 

 

African Journal of Disability, Vol 9, 2020

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.

Introduction: disability, partnership, and family across time and space

VIKSTRÖM, Lotta
SHAH, Sonali
JANSSENS, Angélique
2020

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Notions of family life and romantic partnership, like notions of disability, have been culturally constructed and socially produced over historical time, and our understandings of these notions are being continually challenged and re-negotiated across time and space. Policies, institutions, and cultural practices across the globe have brought about changes to the construction of the family and to the rights and inclusion of disabled people in private and public life. This special issue brings together a collection of studies from different countries and time periods to explore the interplay between disability, romantic partnerships, and family life across the individual lifetime and between generations. With this interdisciplinary collection, we seek to merge disability research and research on family and partnerships through a life course lens. This offers unique insights and opportunities to interconnect his- torical and cultural location and changing social institutions with individual and family experiences. This introduction presents the eight studies in the collection and discusses them within a life course frame that views disabled people’s roles as partners, spouses, and members of a family. In so doing, it engages in an analysis of (dis)similarities concerning how family dynamics, romantic relationships, and disability have developed over time and in different spaces.

Aid Connect Inclusion Works (NIGERIA) Qualitative Formative Research

BBC Media Action
April 2020

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BBC Media Action is implementing a Department for International Development (DfID) funded project aimed at increasing action and investment from private, public and civil society actors to enable economic inclusion for women and men with disabilities through employment, with focus on FCT, Lagos and Kano states. The formative research provides insights to help (re)shape the design and implementation of media capacity strengthening activities on the project.

 

The opinions expressed are those of the authors and do not necessarily reflect the views or policies of the UK government or members of the Inclusion Works consortium.

Work ethics and societal norms influence sick leave and return to work: tales of transformation

MOLDVIK, Isa
STAHL, Christian
MUSSENER, Ulrika
February 2020

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Purpose: This study’s purpose was to explore how people on sick leave manage societal norms and values related to work, and how these influence their perspectives of themselves throughout the rehabilitation process.

 

Materials and methods: This was a longitudinal interview study with a narrative approach, comprising 38 interviews with 11 individuals on long-term sick leave. Data collection was conducted in two phases and analysed iteratively through content analysis.

 

Results: The results suggest that work ethics and societal norms influence individuals’ views of themselves and the sick leave and rehabilitation process. Conforming one’s personal values to the work norm can create internal conflicts and cause feelings of shame for not being able to live up to the established norm. The strong work norm may create unrealistic expectations, which in some cases may result in constraining the return to work process.

 

Conclusion: To transform a sick leave narrative into a positive one, societal norms and their influence on identity needs to be recognised. Stakeholders involved in the process can contribute to a positive transformation by not only supporting return to work, but also to acknowledge and help people manage their self-image as having a disability that limits their ability to work.

Harmful cultural beliefs and practices, stigma and discrimination towards women and girls with disabilities: a toolkit for change

UNESCO OFFICE HARARE
UNITED NATIONS PARTNERSHIP TO PROMOTE THE RIGHTS OF PERSONS WITH DISABILITIES
2020

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This toolkit serves to highlight the intersection between gender, culture and disability. Following the completion of a study titled Advancing the rights of women and girls with disabilities in Zimbabwe, a review of the interface of culture, gender and disability in Zimbabwe, it was evident that there were cultural and social issues not being adequately addressed in communities. 

This toolkit was formulated based on the study findings, dialogue with key disability stakeholders and principles of the CRPD.

The following is a list of the key articles from the CRPD that form the base of this toolkit:

  • Article 3: General principles (8 in total)
  • Article 6: Women with disabilities
  • Article 8: Awareness raising
  • Article 13: Access to justice
  • Article 23: Respect for home and the family
  • Article 25: Health

This toolkit strives to empower the trainer and the trainee(s) on the virtues encapsulated in the CRPD by localizing the concepts at community level in Zimbabwe.

Inclusion through folk high school in Sweden – the experience of young adult students with high-functioning autism

HUGO, Martin
HEDEGAARD, Joel
January 2020

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Purpose: The purpose of this study is to provide a description of the learning environment at Folk High School for participants with high-functioning autism and to examine their learning experience at Folk High School.

 

Methods: A qualitative interview study was conducted with 21 participants who were enrolled at Folk High School which had been adapted to suit young adults with high-functioning autism. The interviews were analysed by means of a thematic content analysis which resulted in the identification of 6 themes related to learning experiences at Folk High School.

 

Results: The participants enjoyed themselves and felt secure at Folk High School. They felt that they and their academic endeavours were suitably recognised, acknowledged, and understood. They reported that the teaching was suitably adapted for them and they felt that they could succeed in their studies. A frequent report that they made concerned their experience of clear structures in the teaching process and its predictability. The participants stated that Folk High School has the ability to satisfy each participant’s needs, which entailed lower levels of perceived stress than what they had experienced in their previous schooling. The participants experienced personal development during their time at Folk High School.

 

Conclusions: Folk High School, and its special character, is able to successfully satisfy the needs of participants with high-functioning autism. Many of the participants, for the first time in their lives, experienced a sense of inclusion in an educational system and felt that they could succeed in their studies. However, there exists a risk that they become institutionalised, which entails that the participants function well primarily in Folk High School’s safe and caring environment.

Experiences of primary caregivers of children with cerebral palsy across the trajectory of diagnoses in Ghana

KYEREMATENG, Joana D.A
EDUSEI, Anthony
DOGBE, Joslin A.
OPUKU, Maxwell P.
NKETSIA, William
HAMMOND, Chrales
AFRIYIE, Sally A.
September 2019

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Background: Cerebral palsy (CP) is a non-progressive disorder of posture or movement caused by a lesion to the developing brain that results in functional limitations. The diagnosis of CP can vary from one child to another, causing family stress because of vague and unknown outcomes of the disorder. Although there are negative attitudes in Ghanaian societies towards primary caregivers and children with disabilities, fewer attempts have been made to understand their experiences.

 

Objectives: The main aim of this study was to explore the experiences of primary caregivers across the trajectory of the diagnosis (before, during and after) of CP in the setting of a tertiary hospital.

 

Method: Using Social Capital Theory as framework, 40 primary caregivers of children with CP, who were receiving treatment at a major referral hospital in Ghana, were interviewed about their experiences before, during and after diagnosis.

 

Results: The results that emerged from the thematic analysis were discussed as follows: experiences before diagnosis, experiences during the diagnosis and experiences after the diagnosis. Particularly, participants discussed their inability to access essential services such as education for their children with CP.

 

Conclusion: In light of systemic challenges faced by participants and their children with CP, the need for health policymakers to prioritise the public education about CP, promoting the well-being of caregivers and other implications of the study have been discussed.

 

 

African Journal of Disability, Vol 8, 2019

Prevalence, identification, and interference of pain in young children with cerebral palsy: a population-based study

TEDROFF, Kristina
GYLLENSVARD, Mirja
LOWING, Kristina
September 2019

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Objective: To explore the presence of pain, how pain was addressed by physicians and parents, and how pain affected everyday life in young children with cerebral palsy (CP).

 

Methods: Children with CP, aged 5–10 years, participated in this cross-sectional study. Data were collected from medical records spanning a period of two years and by a standardized parental interview that included six structured questions and the Pain Interference Index.

 

Results: A total of 118 children, with a mean age of 7.4 years (SD 1.5), participated in the study. The parents of 81% of these children were interviewed. Pain was reported in 52% of the children, and pain was present at all severity levels. The prescription of analgesics was documented in 25% of these children’s medical records. Fifty-nine percent of the children with pain received analgesics from their parents. Pain restricted the children’s everyday lives particularly concerning sleep, school work and being with friends.

 

Conclusions: Half of this group of young children with CP were reported to have pain. Pain restricted the children's everyday lives and seemed to be under-treated. If pain can be addressed early, the children's everyday lives are likely to be improved.

Good practices on the implementation of the UNCRPD in Timor Leste (2015-2017)

HANDICAP INTERNATIONAL
DOS SANTOS, Domingos T.M.
et al
August 2019

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The 2015-2017 Advocating for Change Project (AfC), a project funded by the German Federal Ministry for Economic Cooperation and Development (BMZ), aimed at promoting and advocating for rights of people with disabilities through the push for the ratification of the UNCRPD at the national level, improving quality decentralization process at the local level and promoting quality livelihood action for people with disabilities through improved and inclusive vocational training center (CNEFP) in Tibar.

One particular activity in this project is the collection and dissemination of best practices with the "Making it Work" methodology. This methodology aims to document and promote already existing best practices that adhere to the principles of UNCRPD. Making it Work utilizes a multi stakeholder approach and encourages members of DPOs and other organizations to identify best practices and effective action in and surrounding their localities. These best practices are then collected with the ultimate goal to serve as examples of embodiment of the UNCRPD for replication by organizations or institutions elsewhere.

Sport coaches as policy actors: an investigation of the interpretation and enactment of disability and inclusion policy in swimming in Victoria Australia

HAMMOND, Andrew M
PENNEY, Dawn
JEANES, Ruth
2019

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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.

People are neglected, not diseases: the relationship between disability and neglected tropical diseases

HAMILL, Claire Louise
et al
May 2019

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The affect of NTDs can contribute to poverty, illness, mental health and psychosocial, cognitive, intellectual and physical impairments, all of which can, in turn, result in disability through a multifaceted process upon which many other factors impinge. It is this complex and non-linear relationship between disability and NTDs that forms the basis of this review

 

Transactions of The Royal Society of Tropical Medicine and Hygiene 2019; 00: 1–6
doi:10.1093/trstmh/trz036

 

 

Disability, socialism and autonomy in the 1970s: case studies from Denmark, Sweden and the United Kingdom

RYDSTRÖM, Jens
2019

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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.

Report on the extent to which Rwanda’s implementation of the SDGs complies with its obligations under the CRPD

RWANDA UNION OF THE BLIND (RUB)
April 2019

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This report aims to examine the extent to which Rwanda’s activities aimed at achieving the goals and targets set out in the SDGs include and consider people with disabilities and comply with its commitments under the CRPD. 

Information for this report was obtained from two sources: the first source was the available documents including government policies, laws and reports, as well as a variety of other documents and reports from other sources. The second source of information was interviews conducted with people with disabilities from three different regions of the country, namely Musanze district, Nyagatare district, and the city of Kigali.

 

This report focuses on five SDGs which were selected after a series of consultations with people with disabilities and their organisations. These are:

Goal 1: End poverty in all its forms everywhere;
Goal 3: Ensure healthy lives and promote well-being for all at all ages;
Goal 4: Ensure inclusive and equitable quality education and promote lifelong learning opportunities for all;
Goal 5: Achieve gender equality and empower all women and girls;
Goal 8: Promote sustained, inclusive and sustainable economic growth, full and productive employment and decent work for all.

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