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Engaging girls and women with disabilities in the global South: Beyond cultural and geopolitical generalizations

NGUYEN, Xuan Thuy
STIENSTRA, Deborah
2021

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This article invites readers to engage with girls and women with disabilities in the global South. It challenges the epistemological domination of Western disability studies in Southern bodies and contexts, and provides one specific way to read the intersection between disability, gender, and ethnicity in the context of Vietnam. Drawing on the politics of engagement developed within the Transforming Disability Knowledge, Research, and Activism project, we argue for recognizing the lingering impacts of colonialism and imperialism in producing disability and impairment in the South, while suggesting new ways of engaging with disabled girls and women through the use of inclusive, decolonial, and participatory methods.

‘Teachers Did Not Let Me Do It.’: Disabled Children’s Experiences of Marginalisation in Regular Primary Schools in China

WANG, Yuchen
2021

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The large-scale mainstreaming of disabled children in education in China was initiated with the launching of a national policy called ‘Learning in Regular Classrooms’ in the late 1980s. More than thirty years on, and little is known about disabled children’s daily experiences in regular schools due to a lack of research that foregrounds their voices. This paper reports the main findings from an ethnographic study conducted in 4 state- funded primary schools in Shanghai involving 11 children labelled as having ‘intellectual disabilities’, 10 class teachers and 3 resource teachers. Data were collected through participant observation, semi-structured interviews, and child-friendly participatory activities, and thematically analysed to identify patterns in practices and beliefs that underpin the processes of inclusion and exclusion. The research found that the child participants were facing marginalisation in many aspects of school life with rather limited participation in decision-making. The exclusionary processes were reinforced by a prevailing special educational thinking and practice, a charitable approach to the disadvantaged in a Confucian society, and an extremely competitive and performative schooling culture. The findings address the need to hear disabled children’s voices to initiate a paradigm shift in understanding and practice to counterbalance deep-rooted barriers. The paper concludes with suggestions for future research.

Prevalence, types, and combinations of multiple problems among recipients of work disability benefits

BRONGERS, Kor A
HOEKSTRA, Tialda
ROELOFS, Pepijn D D M
BROUWER, Sandra
2021

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Purpose: For persons on disability benefits who are facing multiple problems, active labour market poli- cies seem less successful. Besides health problems, these people perceive personal, social, and environ- mental problems. Since very little is known about these “non-medical” problems our aim was to explore the prevalence of clients experiencing multiple problems, the types and number of perceived problems, combinations of perceived problems, and associated characteristics in a group of work disability benefit recipients.

 

Methods: We performed a cross-sectional study, using self-reported data on perceived problems and socio-demographics, and register data from the Dutch Social Security Institute on diagnosed diseases and employment status. A convenient group of labour experts recruited eligible clients on work disability benefit.

 

Results: Of the 207 persons on work disability benefit, 87% perceived having multiple problems. Most reported problems were related to physical (76%) or mental (76%) health. Health problems most fre- quently occurred together with a mismatch in education, financial problems, or care for family members. Clients with lower education experienced significantly more problems than clients with an intermediate or high educational level.

 

Conclusions: Clients with multiple problems face severe and intertwined problems in different domains of life, and need tailored multi-actor work disability management.

Exploring participation in family and recreational activities among children with cerebral palsy during early childhood: how does it relate to motor function and parental empowerment?

KALLESON, Runa
JAHNSEN, Reidun
ØSTENSJØ, Sigrid
2021

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Purpose: To explore participation in real-life activities during early childhood, compare children’s partici- pation based on motor function and investigate relationships between participation and parental empowerment.


Methods: Data derived from the Cerebral Palsy Follow-up Program (CPOP) in Norway and the research registry Habilitation Trajectories, Interventions, and Services for Young Children with CP (CPHAB). Fifty-six children (12–56 months, GMFCS levels I–IV, MACS levels I–V) and their families were included. Frequency and enjoyment of participation were assessed by the Child Engagement in Daily Life Questionnaire and parental empowerment in family and service situations by the Family Empowerment Scale at least twice during the preschool years. Differences between groups based on motor function were explored by the Kruskal–Wallis tests. A linear mixed model was conducted to explore relationships between child partici- pation and parental empowerment.

 

Results: Similarities and differences in participation between children at different motor function levels varied between the activities explored. Fluctuations in frequency and stable enjoyment scores over time were most common. A statistically significant relationship was revealed between child participation and parental empowerment in family situations, but not in service situations.

 

Conclusions: Child participation appears as context-dependent and complexly influenced by both motor function and parental empowerment. This supports a focus on transactional processes when exploring and promoting child participation.

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.

Background: Sexual and reproductive health (SRH) of young people including those with disabilities is a major public health concern globally. However, available evidence on their use of sexual and reproductive health services (SRHS) is inconsistent.Object

KUMI-KYEREME, Akwasi
2021

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Background:Sexual and reproductive health (SRH) of young people including those with disabilities is a major public health concern globally. However, available evidence on their use of sexual and reproductive health services (SRHS) is inconsistent.


Objective:This study investigated utilisation of SRHS amongst the in-school young people with disabilities (YPWDs) in Ghana using the healthcare utilisation model.


Methods: Guided by the cross-sectional study design, a questionnaire was used to obtain data from 2114 blind and deaf pupils or students in the age group 10-24 years, sampled from 15 purposively selected special schools for the deaf and the blind in Ghana.


Results: About seven out of every 10 respondents had ever utilised SRHS. The proportion was higher amongst the males (67.8%) compared with the females (62.8%). Young persons with disabilities in the coastal (OR = 0.03, 95% CI = 0.01–0.22) and middle (OR = 0.06, 95% CI = 0.01–0.44) zones were less likely to have ever utilised SRHS compared with those in the northern ecological zone. The blind pupils or students were more likely to have ever utilised SRHS than the deaf (OR = 1.45, 95% CI = 1.26–3.11).


Conclusions: Generally, SRHS utilisation amongst the in-school YPWDs in Ghana is high but significantly associated with some predisposing, need and enabling or disabling factors. This underscores the need for policymakers to consider in-school YPWDs as a heterogeneous group in the design and implementation of SRHS programmes. The Ghana Education Service in collaboration with the Ghana Health Service should adopt appropriate pragmatic measures and targeted interventions in the special schools to address the SRH needs of the pupils or students.

‘Because of COVID, Everything is a Mess’ How Have People with Disabilities Experienced the Pandemic in Nepal and Bangladesh?

ROHWERDER, Brigitte
THOMPSON, Stephen
SHAW, Jackie
WICKENDEN, Mary
KAYASTHA, Shubha
SIGDEL, Anita
AKTER, Fatema
BOSRI, Rabia
March 2021

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COVID-19 is deepening pre-existing inequalities. Emerging research suggests that people with disabilities across the world have experienced various rights violations and been disproportionality affected by the health, economic and social impacts of the pandemic and responses to it. The aim of this research was to better understand how people with disabilities who are often excluded from research have experienced the evolving COVID-19 pandemic in Bangladesh and Nepal. In order to better understand how it has affected some of the most marginalised groups of people with disabilities, this study used in-depth qualitative research to focus on people with intellectual, psychosocial, deafblindness and other multiple impairments.

 

আমরা বাংলাদেশে (20 জন লোক) এবং নেপালে (15 জন লোক) বসবাসরত 35টি ডিজেবলড লোকদেরকে কোভিড-19 প্রাদুর্ভাব চলাকালীন সময়ে তাদের জীবন সম্পর্কে জিজ্ঞাসা করেছি। তাদের মধ্যে বধিরতা, নেত্রহীনতা, বৌদ্ধিক ডিজেবিলিটি এবং মানসিক ডিজেবিলিটি’র মতন বিভিন্ন ধরণের ডিজেবিলিটি রয়েছে। তাদেরকে জিজ্ঞাসা করার প্রধান কারণ হল যে প্রায়শই তাদেরকে তাদের জীবন সম্পর্কে কিছুই জিজ্ঞাসা করা হয় না। আমরা ডিজেবলড বাচ্চাদের বাবা-মাদেরকেও তাদের অভিজ্ঞতা সম্পর্কে জিজ্ঞাসা করেছি।

 

हामीले बङ्गलादेश (20 जना मानिस) र नेपाल (15 जना मानिस) मा अपाङ्गता भएका 35 जना व्यक्तिलाई कोभिड-19 को प्रकोपको समयमा आफ्नो जीवन बारे हामीलाई बताउन अनुरोध गर्‍यौं। उहाँहरूलाई वणदृष्टिविहीन, बौद्धिक अपाङ्गता र मनोसामाजिक अपाङ्गता जस्ता विभिन्न अपाङ्गता थिए। उहाँहरूलाई प्रायः आफ्नो जीवन बारे नसोधिने भएकोले हामी उहाँहरूलाई सोध्न चाहन्थ्यौं। हामीले अपाङ्गता भएका बालबालिकाका आमाबुवाहरूलाई पनि सोध्यौं।

How targeting mechanisms can identify people with disabilities for inclusion in social protection programmes

SAMMON, Elayn
CARRARO, Ludovico
COTE, Alexandre
ZEVENBERGEN, Stacey
HOLMES, Rebecca
March 2021

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Developed by Social Protection Approaches to COVID-19: Expert Advice (SPACE) in collaboration with the UNPRPD joint program on inclusive Social Protection, the UNPRPD global initiative on COVID 19 inclusive response and recovery, and Humanity & Inclusion.

The COVID-19 pandemic has demonstrated that countries which have disability identification mechanisms and registries already in place have been in a better position to provide fast relief and expand shock responsive support to persons with disabilities and their families. 

This guidance note includes:

  • Brief introduction to the definitions and terminology surrounding disability and the concept of inclusive social protection
  • Summary of the rationale for the inclusion of persons with disability in social protection programming
  • Examples for overcoming the challenges for outreach, identification, and registration, and needs assessment
  • Some country examples
  • Overall implications for future programming.

‘It’s been taken away’: an experience of a disappearing dyslexia diagnosis

CAMERON, Harriet
2021

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This research explores the experiences of Beth, a university student in the UK, as she comes to be labelled as ‘dyslexic’, and as she has her diagnosis taken away. Through use of Interpretative Phenomenological Analysis (IPA) and discourse analysis, the research seeks to understand how Beth made sense of these experiences, and to explore the discursive ‘life’ of dyslexia within this sense-making. The discussion in this paper proceeds chronologically through Beth’s story, from ‘struggle’, to ‘legitimation’ to ‘derogation’, and concludes with a call to recognise the role of diagnosis in the field of special educational needs (SEN) from a social constructionist and relational perspective.

Experiences of Reciprocal Caring Among AdultsWith an Intellectual Disability Caring for an OlderFamily Member

TRUESDALE, Maria
TAGGART, Laurence
RYAN, Assumpta
McCONKEY, Roy
2021

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Background: Internationally, many children and adults with intellectual disabilities are continually being supported by their family members to live within their family home. However, as a consequence of the ageing process some family members can struggle to continue to care because of their failing physical and/or mental ill-health. This has resulted in a shift in the parameters of the rela-tionship for some adults with intellectual disabilities with their formerly dependent role evolving into a caregiving one. This had become known as “reciprocity” or “mutual support.” Limited information exists about these “hidden carers” and what services are available to support them.

 

Aim: This article explored the lived experiences of nine adults with intellectual disabilities who provided emotional and tangible support to an ageing family member.


Method: A qualitative methodology was employed using semi-structured interviews. Nine participants with mild-to-moderate intellectual disabilities were interviewed within one region of the United Kingdom. The interviews were analyzed using thematic analysis.

 

Findings: Five themes emerged within these narrative accounts: natural transition to caring; the health needs of the ageing familymember; support; impact of caregiving and future planning.

 

Discussion: The needs of these unknown hidden carers, and also ageing family members, are immediate and urgent. Policy makers, commissioners and service providers need to examine the type of “in-house” support provided to these new carers if they are to continue living within their family home with their ageing family member, who will also need additional support. Neglecting both cohorts will lead to greater costs to services in the longer term and seriously threaten the quality of life of people with intellectual disabilities and their family carers.

What evidence is there for the benefits of inclusive education for children without disabilities? - Evidence brief

STEFFEN, Liändrie
March 2021

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Inclusive education offers a variety of potential academic and social benefits for all students; with as well as without disabilities. However, a common concern among the non-disabled population is the potential negative impacts the inclusion of students with disabilities might have on their non-disabled classmates.  These negative beliefs and attitudes by parents and teachers can translate into a lack of implementation of inclusive education. There is substantial evidence for the benefits of inclusion for students with disabilities, however, there is very little evidence on the impact it has on non-disabled students, particularly in LMICs compared to HICs. This evidence brief explores evidence-based recommendations on the benefits of inclusive education for children without disabilities and how this issue shapes inclusive education implementation in LMICs.

The Role of the Family Network When Raising a Child with a Disability in Low- and Middle-Income Countries

BIZZEGO, Andrea
LIM, Mengyu
DIMITRIOU, Dagmara
ESPOSITO, Gianluca
2021

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Family plays a role in supporting child development, by facilitating caregiving and other parental practices. Low- and middle-income families typically have a complex structure with many relatives living together in the same household. The role of family and family complexity in the caregiving of children with disabilities is still unknown. In this study, we use data from N = 22,405 children with severe (N = 876) and mild or no disability (N = 21,529) from a large dataset collected in the 2005–2007 Multiple Indicator Cluster Survey. In particular, we adopt PageRank, a well-known algorithm used by search engines, to quantify the importance of each child in the family network. We then analyze the level of caregiving the child received in light of the child’s importance and developmental status, using a generalized linear model. Results show a main effect of child’s importance and of the interaction of child’s importance and developmental status. Post hoc analysis reveals that higher child importance is associated with a better caregiving outcome only for children with mild or no disability.

COVID-19 in South Asia: State practices, responses and the experiences of persons with disability within the region

MEHROTRA, Nilika
SOLDATIC, Karen
2021

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An introduction into South Asia looking at the pandemic who people are struggling with in 2020. The DGS has aimed to first identify and acknowledge the diversity of disability experiences in the Global South and, second, make these experiences readily available and accessible to disabled people and their communities in the regions where the contributors themselves are from. In fact, in undertaking this special issue as editors, we would like to recognize the incredible persistence of our contributors to continue to work with us throughout the development of the papers, alongside acknowledging the many original contributors who were also unable to accept our invitation to participate because of the covid19 pandemic impacts upon every aspect of their lives.

Life Becomes Harder: Intersectional Feminist Lens to Dis/abled Experience of Women in Afghanistan during Covid 19 Pandemic and Post Covid Development Context

SHAJAHAN, Sharin
2021

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More than 40 years of war, ethnic conflict, violence and poverty have made Afghanistan a country where at least one in five live with a serious physical, sensory, intellectual, or psychosocial disability. Women with disabilities in Afghanistan are considered to be ‘doubly stigmatized’ due to gender inequality and disability stigmatization, and are often hidden from the social and political aspects of life. Although in the post-Taliban era, development interventions backed by international aid have been designed to include women with disabilities, their intersectionalities cutting across class, ethnicity, region, different types of impairments and other positionalities have not been explored to address different needs, barriers and inequalities across various regions. In this context, the Covid 19 crisis has made the lives of Afghan women with disabilities harder due to gender discrimination, stigma and shame, unemployment, lack of mobility, lack of awareness, and insufficient institutional support and infrastructure coupled with widespread feelings of insecurity resulting from conflict and terrorist attacks. Based on both primary and secondary data, this paper will shed a feminist intersectional insight into the plight of women with dis/abled experience during the Covid 19 pandemic in the complex political and social terrain of Afghanistan. The paper will also explore visions for designing interventions aimed at integrating women with disabilities in post Covid development plans.

Invisible to the Law: COVID-19 and the legal consciousness of persons with disabilities in Bangladesh

MIZAN, Arpeeta Shams
2021

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Despite disability rights being recognized through formal legislation in Bangladesh, the rights of persons with disabilities are still not effectively ensured. State interventions during the pandemic have not sufficiently accommodated the rights of Persons with Disabilities. Pre-existing social prejudices have added to their plight. Due to social prejudice and myriad access to justice challenges, persons with disabilities in Bangladesh face negative attitudes when it comes to exercising their legal rights. The article uses primary data obtained through qualitative interviews and secondary sources to illustrate how the Covid19 pandemic has reinforced structural discriminations and increased the vulnerability of persons with disabilities

COVID 19 in Nepal: The Impact on Indigenous Peoples and Persons with Disabilities

GURUNG, Pratima
2021

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The COVID 19 pandemic crisis is unfolding against the backdrop of several important milestones for equality and the human rights of various marginalized groups including women and girls, indigenous peoples and persons with disabilities in all their diversities and intersections in Nepal. The COVID-19 pandemic has entrenched systemic gaps, underlying structural inequalities and pervasive discrimination, more visible with inadequate healthcare, access to information, employment and livelihoods, and social protection system mainly for marginalized groups. This study aims to understand the challenges and impacts of the COVID 19 on marginalized groups including persons with disabilities in Nepal. Based on qualitative research with primary and secondary information, the paper emphasizes the experiences and realities of marginalized groups during the lockdown and pandemic situations. Some of the existing challenges faced by marginalized groups include access to information and health measures related to COVID 19, access to livelihoods and employment, increasing rates of suicide, violence against women from marginalized groups, women with disabilities, and others. The study will integrate these components and deal with intersections with concrete recommendations. 

COVID-19 from the margins: Gendered-Disability experiences in Sri Lanka

KANDASAMY, Niro
PERERA, Binendri
SOLDATIC, Karen
2021

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Recent research in the global South has highlighted that persons with disabilities are a vulnerable category of persons during the COVID19 outbreak. This paper provides some preliminary insights into Sri Lankan government responses to the outbreak, which, as we will be highlighting, take an ableist approach that further neglect the interests of persons with disabilities while entrenching disability dependencies on informal structures of familial and household support and in turn, increasing their marginality and economic insecurity. The COVID-19 outbreak hit Sri Lanka during a period of political turmoil – national Parliament had been dissolved on 3 March 2020 with elections initially called for 25 April 2020, six months prior to the official end of the Government’s elected term. Drawing upon rapid interview narratives, we present the lived experiences of two women with disabilities and the unique challenges they are facing during the COVID-19 pandemic. As we write this paper in September 2020, we acknowledge that the longer-term impacts of COVID-19 will not become immediately visible, particularly for disabled people from ethno-religious minority groups, including those residing within the former conflict zones.

Making themselves heard: deaf people in India during the global COVID-19 pandemic

GULYANI, Ritika
2021

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The onset of the sudden and global pandemic, COVID-19, has forced all of us to change our ways of living and interacting with the outside world. Additionally, a lot of restrictions on movement mandated by governments have also been issued in the past few months. In the context of India, a nationwide lockdown was in place from midmarch till the end of May. These lock-downs have had serious consequences for various segments of the population across the country, especially, those on the margins, who are vulnerable and/or in a minority. One such segment has been the disabled population. This paper, with the help of narratives, addresses the challenges faced by the deaf population during the COVID crisis and the ways in which they have negotiated these. There has been a big void in the dissemination of information to the deaf, owing to the fact that the majority of information from official sources has not been translated into sign language. More so, in times when information is the key to maintaining proper health care, this is a big lacuna. Additionally, the paper will also talk about the role of technology as well as of deaf groups in the lives of deaf people, and how it has proved to be very helpful to not just spread proper awareness about the pandemic, but also in trying to build up a movement in trying to recognise Indian Sign Language as the 23rd Official Language of India. 

Psychosocial Consequences of COVID-19 on Persons with Visual Impairments

NAYAR, Mahima
JUVVA, Srilatha
LAKSHMAN, Chitra
2021

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The ongoing pandemic situation has disrupted lives globally. These disruptions are embodied in gender, social location, ethnicity and in the body. Public health facilities, accessibility of urban infrastructure, support services for persons with disability, educational accessibility in cities prior to the pandemic have influenced the manner in which disabled people are able to adapt to the current situation. This paper presents the experiences of young people living with visual impairments who reside in an urban low-income community in India. It explores the unique challenges such as the further reduction in accessibility to health and educational facilities that they are facing and the manner in which their carefully structured everyday lives have changed. The narratives also describe the manner in which they are coping with the public health disaster in addition to preparing for the new ‘norms’ that people living with visual impairments are required to navigate as an outcome of the pandemic. The paper gives voice to their needs and requirements in this situation, and in turn, aims to inform policy responses through first person accounts. 

Mental health of LGBTIQ+ people in India during the COVID 19 pandemic: risks, access, lessons

TENNETI, Suchaita
2021

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The COVID-19 pandemic and the associated containment measures have resulted in a mental health crisis globally. Marginalised populations have been disproportionately affected during the pandemic with an aggravation of existing inequalities, and this has increased the risks to their mental health. The LGBTIQ+ population is among those marginalised whose lives have been rendered even more precarious than before by the pandemic. This paper explores some of the main risks to the mental health of LGBTIQ+ people in India, the advice being given to them by mental health professionals and activists, and need for queer revisionings of uncertainty, the concept of a future and individualism.

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