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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.

Malawian mothers’ experiences of raising children living with albinism: A qualitative descriptive study

LIKUMBO, Naomi
DE VILLIERS, Tania
KYRIACOS, Una
2021

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Background: Albinism in humans is characterised by a reduced amount of pigment (melanin) present in the skin, hair follicles and the eye; approximately 7000–10 000 Malawians of all ages are affected. Children with these features face extreme forms of human rights abuses, even death.

 

Objectives: This study aims to describe Malawian mothers’ experiences, perceptions and understanding of raising children with albinism (CWA).

 

Methods: The study was conducted in 2018 using a qualitative descriptive design, with purposive sampling and voluntary participation. Mothers, 18 years and older, who had given birth to a CWA and who attended the dermatology clinic of a local public hospital participated. An interview guide used during standardised, open-ended interviews was translated from English to Chichewa using forward and backward translation. Interviews were conducted in Chichewa, audio recorded, transcribed and forward and back translated from English to Chichewa. Thematic data analysis was employed.

 

Results: The mean age of participants (N = 10) was 33 years; two had albinism. Emerging themes confirmed the existence of myths and stereotypes regarding albinism but from the mothers’ perspectives. Mothers reported: (1) some experiences of emotional pain, initially, but also love and acceptance of their children, despite adverse reactions of others; (2) their experiences of stigmatisation of their children and themselves, and of intended harm to their children, and (3) their own lack of knowledge and understanding of albinism.

 

Conclusion: In our limited study, mothers’ self-reported experiences of raising CWA in Malawi highlight the need for educational programmes on albinism at national level, particularly for families with a CWA, health professionals and educators.

‘Satan is holding your tongue back’: Stuttering as moral failure

ISAACS, Dane H
2021

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Background: The last decade has seen researchers and speech–language pathologists employ and advocate for a disability studies approach in the study of the lived experiences of people who stutter and in the design of interventions and treatment approaches for such individuals. Joshua St. Pierre, one of the few theorists to explore stuttering as a disability, mentions as a key issue the liminal nature of people who stutter when describing their disabling experiences.

 

Objectives: This article aimed to build on the work of St. Pierre, exploring the liminal nature of people who stutter.

 

Method: Drawing on my personal experiences of stuttering as a coloured South African man, I illuminated the liminal nature of stuttering.

 

Results: This analytic autoethnography demonstrates how the interpretation of stuttering as the outcome of moral failure leads to the discrimination and oppression of people who stutter by able-bodied individuals as well as individuals who stutter.

 

Conclusion: As long as stuttering is interpreted as the outcome of moral failure, the stigma and oppression, as well as the disablism experience by people who stutter, will continue to be concealed and left unaddressed.

‘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.

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.

Reducing albinism related stigma in Tanzania: an exploration of the impact of radio drama and radio interview

DE GROOT, T M M
VELDMAN, M
JACQUET, W
PETERS, R M H
VANWING, T
MEURS, P
2021

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Reducing stigma is key to improving the wellbeing of people with albinism in Tanzania. This study aimed to obtain more insight into the effects of two radio interventions with regard to albinism-related stigma: a radio drama and a radio interview. Assessment of the radio interventions was based on two attitude measurement instruments (The Albinism Explanatory Model Interview Catalogue Community Stigma Scale and the Albinism Social Distance Scale), an entertainment scale, and two informal (group) interviews. In total, 111 community members participated in the assessment prior to the radio drama, and 65 after. In the case of the radio interview, 123 community members participated in the assessment prior to the radio show, and 77 after. Following the radio drama, a significant reduction was found in terms of community stigma, and a reduction in social distance was found after both interventions. The entertainment score for both interventions was high, but significantly higher for the radio drama. The respondents indicated that they had gained more understanding of albinism as a result of the interventions, and were positive about this type of education. The current study shows that a radio show in which the listener interacts with someone with albinism can contribute to a reduction in stigma, and demonstrates that different types of radio intervention can have different outcomes.

Menstrual Hygiene Management: Challenges and Coping Strategies for Adolescents with Disabilities in the Kumasi Metro of Ghana

Enoch, Acheampong
Nadutey, Alberta
Afful, Barbara Fosua
Anokye, Reindolf
2020

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Purpose: Effective menstrual hygiene management is vital to the health, well- being, dignity, empowerment, mobility and productivity of girls and women. This study was conducted to ascertain menstrual hygiene management challenges and coping strategies of adolescents with disabilities in the Kumasi Metro of Ghana.

 

Method: An exploratory study design with qualitative approach was employed to select 18 participants. Data was collected through in-depth interviews and focus group discussions, and then transcribed and categorised into specific themes.

 

Results: Females with visual impairment had difficulty in maintaining good menstrual hygiene because of problems in detecting menstrual blood, inability to fix sanitary pads appropriately and wash underwear properly, and anxiety and stress from not knowing whether their period has started. The problems of those with physical impairment were related to inaccessible washrooms, long hours of being seated on the part of wheelchair-users, and difficulty in fixing sanitary pads for those with upper limb impairment. For those with hearing impairment, the main challenge was the communication barrier between them and their significant others whenever they needed help.

 

Conclusion: There are common challenges faced by all girls across the globe with regard to menstrual hygiene management. Adolescent females with disability however face additional challenges with regard to MHM. Those with physical disability encounter accessibility challenges, while the main challenge for the deaf and those with speech problems is communication. The visually impaired live in anxiety due to fear of staining their clothes.

Being a girl & disabled in West Africa : the educational situation in question Mali, Niger, Burkina Faso

Humanity & Inclusion
October 2020

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Questions de recherche

1 / Dans quelle mesure le handicap — en interrelation avec le genre — influence-t-il les parcours de scolarisation des filles handicapées?

2 / Quelles spécificités liées aux types et au degré de handicap (physique, visuel, auditif, intellectuel) peuvent être observées?

3 / Quelles sont les spécificités liées à l’âge des filles handicapées?

4 / A quels enjeux, notamment en matière de protection de l’enfance, les jeunes filles handicapées sont-elle exposées ?

5 / Quelles spécificités contextuelles émergent dans les trois pays, objet de l’étude et dans les différents terrains d’étude?

6 / Quel rôle joue la religion et les croyances populaires dans l’accentuation des discriminations à l’égard des filles handicapées?

7 / Quels éléments facilitateurs (familiaux/communautaires/institutionnels/politiques/etc.) pour l’éducation des filles handicapées pourraient être identifiés dans les différentes zones d’étude?

Être une fille et handicapée en Afrique de l’Ouest : La situation éducative en question : etude pays - Burkina Faso

Humanity & Inclusion
2020

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Questions de recherche

1 / Dans quelle mesure le handicap — en interrelation avec le genre — influence-t-il les parcours de scolarisation des filles handicapées?

2 / Quelles spécificités liées aux types et au degré de handicap (physique, visuel, auditif, intellectuel) peuvent être observées?

3 / Quelles sont les spécificités liées à l’âge des filles handicapées?

4 / A quels enjeux, notamment en matière de protection de l’enfance, les jeunes filles handicapées sont-elle exposées ?

5 / Quelles spécificités contextuelles émergent dans les trois pays, objet de l’étude et dans les différents terrains d’étude?

6 / Quel rôle joue la religion et les croyances populaires dans l’accentuation des discriminations à l’égard des filles handicapées?

7 / Quels éléments facilitateurs (familiaux/communautaires/institutionnels/politiques/etc.) pour l’éducation des filles handicapées pourraient être identifiés dans les différentes zones d’étude?

Être une fille et handicapée en Afrique de l’Ouest : La situation éducative en question : etude pays - Niger

Humanity & Inclusion
2020

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Questions de recherche

1 / Dans quelle mesure le handicap — en interrelation avec le genre — influence-t-il les parcours de scolarisation des filles handicapées?

2 / Quelles spécificités liées aux types et au degré de handicap (physique, visuel, auditif, intellectuel) peuvent être observées?

3 / Quelles sont les spécificités liées à l’âge des filles handicapées?

4 / A quels enjeux, notamment en matière de protection de l’enfance, les jeunes filles handicapées sont-elle exposées ?

5 / Quelles spécificités contextuelles émergent dans les trois pays, objet de l’étude et dans les différents terrains d’étude?

6 / Quel rôle joue la religion et les croyances populaires dans l’accentuation des discriminations à l’égard des filles handicapées?

7 / Quels éléments facilitateurs (familiaux/communautaires/institutionnels/politiques/etc.) pour l’éducation des filles handicapées pourraient être identifiés dans les différentes zones d’étude?

Être une fille et handicapée en Afrique de l’Ouest : La situation éducative en question : etude pays - Mali

Humanity & Inclusion
October 2020

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Questions de recherche

1 / Dans quelle mesure le handicap — en interrelation avec le genre — influence-t-il les parcours de scolarisation des filles handicapées?

2 / Quelles spécificités liées aux types et au degré de handicap (physique, visuel, auditif, intellectuel) peuvent être observées?

3 / Quelles sont les spécificités liées à l’âge des filles handicapées?

4 / A quels enjeux, notamment en matière de protection de l’enfance, les jeunes filles handicapées sont-elle exposées ?

5 / Quelles spécificités contextuelles émergent dans les trois pays, objet de l’étude et dans les différents terrains d’étude?

6 / Quel rôle joue la religion et les croyances populaires dans l’accentuation des discriminations à l’égard des filles handicapées?

7 / Quels éléments facilitateurs (familiaux/communautaires/institutionnels/politiques/etc.) pour l’éducation des filles handicapées pourraient être identifiés dans les différentes zones d’étude?

The temporalities of supported decision-making by people with cognitive disability

WIESEL, Ilan
SMITH, Elizabeth
BIGBY, Christine
THEN, Shih-Ning
DOUGLAS, Jacinta
CARNEY, Terry
2020

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In many societies, people with cognitive disability have been pre- sumed to lack reasoned decision-making capacity. Consequently, substituted decision-making laws and practices have traditionally authorised some people such as parents, guardians or medical professionals, to make decisions on their behalf. Several countries are now moving towards an alternative supported decision-making paradigm whereby people with different cognitive abilities are supported to make decisions that reflect as much as possible their ‘will, preferences and rights’. In this paper we examine how geo- graphical thinking about temporalities might illuminate some of the legal, ethical and practical complexities of supported decision- making. The paper draws on qualitative data from interviews with people with intellectual disabilities or acquired brain injury, and those who support them in making decisions. We examine how temporal scales and boundaries shape the determination of decision-making capacity; how decision-makers’ ‘will and preferences’ are interpreted by supporters; and how the labour of support for decision-making is organised. We argue that further geographical engagement with supported decision-making can help significantly advance this important disability rights agenda.

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.

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.

Framing heuristics in inclusive education: The case of Uganda’s preservice teacher education programme

NANTONGO, Proscovia S.
October 2019

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Background: Recent education-related research has raised concerns about the persistent exclusion of vulnerable learners in Uganda. The Revised Primary Teacher Education Curriculum of 2013 marked an ambitious yet inconclusive attempt to advance the implementation of inclusive education but has encountered deeply entrenched sociocultural exclusionary practices among education experts.

 

Objectives: This study aimed to explicate education practitioners’ interpretations of Uganda’s flagship inclusive education programme in preservice primary teacher education.

 

Method: Drawing on the conceptual vocabulary of frame analysis and the qualitative analysis of individual and group interviews and classroom observations, the interpretations of inclusive education implementation in preservice primary teacher education in Uganda were examined. The participants included policy design experts, curriculum design experts and classroom practitioners.

 

Results: Three main findings emerged. Firstly, interpretations of inclusive education displayed a narrow framing heuristic of inclusive education as a perfunctory, daily practice rather than a pathway for reflective, inclusive pedagogical engagement. Secondly, the heuristic encouraged the treatment of inclusive pedagogy as a ‘label’ under a specific rubric referring to sensory impairments or disabilities – a historical device for sociocultural exclusion. Thirdly, inclusive education was a praxis but was misframed from its original intentions, causing tension and resentment among practitioners. These findings contribute to the debates on the sustainability of inclusive education beyond preservice teacher education.

 

Conclusion: Uganda’s flagship inclusive education programme in preservice primary teacher education was fraught with tensions, ambiguities and an overt, urgent need for change.

 

 

African Journal of Disability, Vol 8, 2019

Stumbling, struggling, and shame due to spasticity: a qualitative study of adult persons with hereditary spastic paraplegia

KERSTENS, Hans C J W
SATINK, Ton
NIJKRAKE, Maarten J
DE SWART, Bert J M
VAN LITH, Bas J H
GUERTS, Alexander C H
NIJHUIN-VAN DER SANDEN, Maria W G
April 2019

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Purpose: Little is known concerning the impact of chronic spasticity on physical activities, social participation, and well-being, and whether patients’ needs are addressed by current treatments. This study aims to investigate these lacunas in persons with a pure form of hereditary spastic paraplegia (HSP), in whom spasticity is a prominent symptom.

 

Methods: Fourteen patients with a pure form of HSP were interviewed. These interviews were recorded, verbally transcribed, and thematically analyzed.

 

Results: Four themes were identified which can be reflected by the phrases: (1) ‘I stumble’, (2) ‘I struggle’, (3) ‘I feel ashamed’, and (4) ‘I need support’. Balance and gait problems led to limitations in domestic activities, employment, and recreation. ‘Stumbling’ also occurred due to pain, stiffness, and fatigue. Struggling was related to the continuous need for adaptation strategies, including the abandonment of some activities. Participants further reported feelings of shame, fear, and frustration. Lastly, they needed more support in daily activities than currently provided.

 

Conclusion: Besides treating spasticity-related motor impairments, patients with HSP need practical support for optimizing their physical activities and social participation. They also seek attention for the non-motor consequences of their chronic spasticity to improve their well-being. Patient-reported outcomes might help to address these needs.

Cultural competence in lifelong care and support for individuals with intellectual disabilities

VAN HERWAARDEN, Aniek
ROMMES, Els W M
PETERS-SCHEFFER, Nienke C
2019

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Objectives: Although an extensive amount of research has been devoted to models defining cultural competence of healthcare professionals in short-term care, there is unclarity about the cultural competencies that professionals providing lifelong care and support should have. The current study aimed to explore which cultural competencies are used by these healthcare professionals, and whether these competencies enabled them to make cultural adaptations to their regular care practices.

 

Design: To investigate cultural competencies and cultural adaptations, semi-structured in-depth interviews were conducted with eight professionals who provide lifelong care and support to individuals with intellectual disabilities. Five cultural competencies were explored: awareness, knowledge, skills, motivation, and encounters.

 

Results: A thematic analysis of the interviews revealed that professionals providing lifelong care and support used all cultural competencies in their care practices. Moreover, our analysis suggested that these competencies could be categorized as either practical or analytical cultural competencies. Although these competencies were conditional in order to make cultural adaptations to care practices, the presence of cultural competencies did not automatically lead to these cultural adaptations. Conclusions: All five cultural competencies were used by professionals in lifelong care and support. Our analysis revealed that both practical and analytical cultural competencies were essential in providing culturally sensitive lifelong care and support. We additionally suggest that the cultural competence of professionals is necessary, but not sufficient, for making cultural adaptations to lifelong care and support for individuals with intellectual disabilities. In many cases, other factors also played a role in a professional’s final decision to adapt their care practices.

 

Conclusions: All five cultural competencies were used by professionals in lifelong care and support. Our analysis revealed that both practical and analytical cultural competencies were essential in providing culturally sensitive lifelong care and support. We additionally suggest that the cultural competence of professionals is necessary, but not sufficient, for making cultural adaptations to lifelong care and support for individuals with intellectual disabilities. In many cases, other factors also played a role in a professional’s final decision to adapt their care practices.

The current situation of persons with disabilities in Jordan

THOMPSON, Steven
August 2018

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This K4D helpdesk research report seeks to explore the current (2018) situation of persons with disabilities (PWD) in Jordan. It presents recent data on the state of PWD in Jordan, such as data on access to basic services for PWD. It also considers the political, social, cultural, and economic context for PWD in Jordan. Finally, it explores laws and policies relevant to the rights of PWD in Jordan. It considers the situation for Syrian refugees with disabilities with regards to the above themes. Where possible, the report presents data disaggregated by age and gender

‘We need “culture-bridges”: professionals’ experiences of sex education for pupils with intellectual disabilities in a multicultural society

LÖFGREN-MÅRTENSON, Charlotta
OUIS, Pernilla
2018

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This study aimed to explore how sex education in special schools in Sweden is influenced and challenged by the multicultural aspects of modern society. In particular, it sought to explore professio- nalls' experiences of sex education and of honour-related experiences among young people with intellectual disabilities. Data from five individual interviews and one focus groups with four profes- sionals were thematically analysed using sexual scripts as a theoretical framework. The results reveal an ambivalent honour-related script geared toward pupils with intellectual disabilities from cul- tural backgrounds differing from those of the Swedish mainstream. The provision of sex education, including information about hon- our-related experiences, is especially important because of these young people’s vulnerability; however, addressing the subject effectively is sensitive and complicated. Colleagues with different cultural backgrounds can act as ‘culture bridges’ for professionals who lack strategies, methods and materials. Increasing profes- sionals’ prerequisite qualifications (e.g. further education, supervision) and adopting autonomy-promoted conduct can empower pupils with intellectual disability to exercise autonomy over their sexuality outside their immediate cultural context.

Online collective identities for autism: The perspective of Brazilian parents

ANTUNES, Debora
DHOEST, Alexander
2018

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The importance of online communities for parents of people with disabilities has been discussed by many scholars in the fields of Digital and Disability Studies, showing, for instance, the importance of social support and the formation of social ties. In order to contribute to this scholarship, this paper explores how collective identity models are built and circulated by parents of autistic people in one of the biggest Brazilian online communities about the subject, ‘Sou autista… conheça o meu mundo’ (I am autistic…get to know my world). The results were obtained through a digital ethnography, based on participant observation and an exchange of information with the members of the community studied. Based on the data collected, the study concludes that the collective identity models that circulate in this community can be grouped into legitimising, resistant, and project identities, as postulated by Castells (2010). The different views reflect how parents see autism and represent the ways it is treated in Brazilian society.

 

Disability and the Global South, 2018 Vol.5, No. 1

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