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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.

"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.

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.

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.

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.

Required to be creative. Everyday ways for dealing with inaccessibility

WÄSTERFORS, David
2020

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Today’s society promises that people with disabilities can access anything, but in practice there are numerous obstacles, and the ways in which people deal with them can be easily missed or taken for granted by policy makers. This article draws on a project in which researchers ‘go along’ people with disabilities in Sweden who demonstrate and recount accessibility troubles in urban and digital settings. They display a set of mundane methods for managing inaccessibility: (a) using others, (b) making deals and establishing routines, (c) mimicking or piggybacking conventions, (d) debunking others’ accounts and performing local politics. The employment of these shared but tailored methods shows the difficulties to be accepted that people with disabilities still face, as well as the wide-ranging tension that exists between the grand rhetoric of inclusion and modest results. The tension implies that people with disabilities are required to be creative.

  • Declarations and policies often say that people with disabilities should have access to anything, but in practice this is not the case.
  • This study investigates what people with disabilities actually do when they have trouble accessing various places or resources. The results show their common and practical ways, and these ways are often taken for granted, overlapping, and combined.
  • People with disabilities ask others to support them when they face troubles to access places or resources, they make deals with important actors and they develop routines. They also observe, imitate and follow others’ actions, to pick out precisely those ways that suit their needs.
  • When people with disabilities find their ways in today’s society they also act with words. They argue against other people’s excuses or justifications for not providing access.
  • The study has found a lot of frustration among people with disabilities who get blocked, excluded or delayed. This gives them motives to engage in politics.

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