Resources search

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

LIKUMBO, Naomi
DE VILLIERS, Tania
KYRIACOS, Una
2021

Expand view

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.

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

Expand view

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.

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

Expand view

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.

Pats Journal

LARUBI, Pat Robert
2020

Expand view

Pats Journal – Albinism News Network (ANN) is an online story telling platform where people come to discover, relate and share positive and inspiring stories of persons with albinism and those around us helping make a difference in the world. The platform features in-depth news analysis, information, interviews, opinion and coverage of events promoting public awareness and social inclusion of persons with albinism

 

Overall, the portal was aimed at creating public awareness across the East African Region and the world at large about challenges face by PWA in Africa in a bid to reduce stigma, social oppression, break myth and showcase the potential of PWA through a well structure and unlimited media space.

COVID 19 disability inclusion emergency response: by the albino foundation, disability inclusion Nigeria

March 2020

Expand view

In order to reduce the spread and impact of COVID 19 on persons with disabilities globally, The Albino Foundation-DISABILITY INCLUSION NIGERIA PROJECT in alignment with the recommendations of International Disability Alliance (IDA) has come up with simple steps to mitigating the virus within this vulnerable population. The basic measures includes:

1.0 Persons with disabilities

2.0 Government

3.0 Members of the public

Measuring Stigma related to People with Albinism in Tanzania: A Cultural Validation Study of the EMIC-CSS and SDS among Adults

DE GROOT, Tjitske
JACQUET, Wolfgang
MEURS, Pieter
PETERS, Ruth
2020

Expand view

Purpose: People with albinism in Tanzania are severely stigmatised. A measurement tool to assess this stigmatisation among adults is lacking. This research aimed at the cultural validation of two Scales to measure stigma related to albinism: The Albinism Social Distance Scale (A-SDS) and the Albinism Explanatory Model Interview Catalogue Community Stigma Scale (A-EMIC-CSS).

 

Method: Conceptual, item, semantic and operational equivalences were evaluated through focus groups and interviews. A pilot study among adults attending religious institutes, as a representation of Tanzanian society, was conducted to assess the measurement equivalence. There were 101 respondents for the test and 79 respondents for the re-test.

 

Results: Conceptual, item, semantic and operational equivalences of the Scales are sufficient. In terms of measurement equivalence, the internal consistency of the A-SDS and A-EMIC-CSS are adequate. However, social desirability should be taken into account when interpreting the findings.

 

Conclusion and Implications: The insights provided by this article can aid in the development of tools to measure stigma cross-culturally and across stigmatising conditions. The combination of the two Scales for short and long-term effect measurement is recommended.

The Cultural Validation of Two Scales assessing Albinism - related Social Stigma among High School Students in Tanzania

GROOT, Tjitske de
PETERS, Ruth
BRAKEL, Wim van
MEURS, Pieter
JACQUET, Wolfgang
2019

Expand view

Purpose: Albinism in Tanzania causes fierce stigmatisation. Although various stigma reduction interventions (SRI) are employed, research on their effectiveness is lacking. This research aimed to develop a tool to measure albinism-related social stigma among high school students in Tanzania. Cultural equivalence was tested for the Explanatory Model Interview Catalogue Community Stigma Scale (EMIC-CSS) and Albinism Social Distance Scale for Adolescents (ASDS-A) assessing conceptual, item, semantic, operational and measurement equivalence.

 

Methods: The methods used were workshops, in-depth interviews, translation and re-translation, discussions, a test (n=337) re-test (n=142) of the survey, and follow-up focus group discussions (n=25).

 

Results: The Scales have proven to be adequate on all equivalences other than measurement equivalence. The reproducibility statistics raise questions that can be explained by characteristics of the sample.

 

Conclusion and Implications: The analysis provides insights for further validation of the Scales, contributes to the discussion about a universal stigma measurement tool and demonstrates the importance of validation studies of existing and proven tools used in a different context.

Seeking a disability lens within climate change migration discourses, policies and practices

BELL, Sarah
TABE, Tammy
BELL Stephen
August 2019

Expand view

Focusing primarily on examples from the Asia-Pacific region (a region including low-lying coastal areas and islands that are frequently highlighted as exemplars of communities on the front line of climate change), this article discusses the need to integrate critical insights from disability studies into current understandings of climate change adaptation and mobility if we are to facilitate more inclusive, democratic and equitable adaptation in the face of climate change

 

Disability & Society, Volume 35, 2020 - Issue 4

https://doi.org/10.1080/09687599.2019.1655856

Case studies on leaving no one behind. A companion volume to the Development Co-operation Report 2018

ORGANISATION FOR ECONOMIC COOPERATION AND DEVELOPMENT (OECD)
December 2018

Expand view

These case studies complement the 2018 Development Co-operation Report: Joining forces to leave no one behind. Case study contributors share knowledge and lessons on what it takes to answer the pledge of the 2030 Agenda for Sustainable Development to leave no one behind through national and sub-national policies, strategies and programmes as well as international development co-operation projects, programmes and partnerships.

 

Chapters include:

 

 

‘Black on the inside’: albino subjectivity in the African novel

LIPENGA, Ken Junior
NGMIRA, Emmanuel
2018

Expand view

The last decade has seen increased attention to the treatment of people with albinism in several African countries, particularly the peril they find themselves in due to stigma and superstition. As a way of countering these misconceptions, there has been educative activism from legal, medical as well as religious perspectives. In this paper, we draw upon a different discourse- literary representation- arguing that in selected African novels, the authors employ a variety of strategies that counter harmful stereotypes about albinism, and in the process act as literary interventions that enable an appreciation of the person behind the skin condition. Drawing from insights in Literary Disability Studies, the discussion examines the representation of albinism in four African novels: Petina Gappah’s The Book of Memory (2015), Meg Vandermerwe’s Zebra Crossing (2013), Unathi Magubeni’s Nwelezelanga: The Star Child (2016), and Jenny Robson’s Because Pula Means Rain (2000), and highlights the way albinism is presented as bodily condition that intersects with other experiences on the continent, including indigenous epistemologies, gender, sexuality and family relationships. 

 

Disability and the Global South, 2018, Vol.5, No. 2

Report of the Independent Expert on the enjoyment of human rights by persons with albinism on her mission to the United Republic of Tanzania

ERO, Ikponwosa
December 2017

Expand view

In accordance with the mandate set out in Human Rights Council resolution 28/6 and at the invitation of the Government of the United Republic of Tanzania, the Independent Expert on the enjoyment of human rights by persons with albinism, Ikponwosa Ero, conducted an official visit to the United Republic of Tanzania from 18 to 28 July 2017. The objective of the visit was to assess the human rights situation of persons with albinism throughout the country, with particular attention to be given to the relatively high number of reports of attacks against them

African Disability Rights Yearbook volume 5 2017

NGWENA, Charles
et al
2017

Expand view

This volume of the African Disability Rights Yearbook is divided into four sections presenting articles, country reports, commentaries on regional developments and a book review. The first section A of the journal presents a number of articles on issues affecting people with disabilities in Africa, ranging from education and rights of children with disabilities to albinism. Section B presents country reports on Djibouti and Madagascar. Section C presents two articles: one on mental health and the other on disability rights developments in the East African Community post-2012. Finally a review of E. Barnes’s 2016 book "The minority body: A theory of disability" is given.

 

Hear my voice: old age and disability are not a curse. A community-based participatory study gathering the lived experiences of persons with disabilities and older people in Tanzania

MRISHO, Mwifadhi
FAKIH, Bakar
GREENWOOD, Margo
STEFF, Marion
2016

Expand view

Community based participatory research (CBPR) was used to provide evidence on the specific nature and experiences of persons with disabilities and older people from their own perspectives in Tanzania, through the lens of social, political, economic and cultural inclusion. The aim was to strengthen efforts to provide services for and improve the lives of people living in the rural and urban settings of Nachingwea and Kibaha Urban Municipal Council. Twenty-nine peer researchers (nine persons with disabilities, 10 older people and 10 Tanzanian Non-Governmental Organisation (NGO) members working in these communities) were involved in the study. A total of 106 stories were collected. Eight priority areas emerged and were chosen by peer researchers for further discussion in groups: access to education and quality learning; access to health services; issues fed back from NGOs; poverty relating to income and dependence; attitudes towards witchcraft and albinism; relationship difficulties and marriage breakdowns; sexual violence and gender issues; poor treatment from family
 

Labeling albinism: language and discourse surrounding people with albinism in Tanzania

BROCCO, Giorgio
2015

Expand view

This article is based on a qualitative study that set out to analyze the labels and terms attached to 28 people affected by albinism in villages in Kilolo district, Tanzania. Even though national and international attention to killings of people with albinism has attempted to improve general knowledge of albinism and reduce discrimination, most of the community members within the study had lit- tle knowledge of the (bio)medical explanations for albinism and tended to marginalize people with albinism. Framed within a wider moral discourse on ill- ness, disability and socially appropriate behavior, albinism is mostly considered to be God’s will or the consequence of past misdeeds within the family, and many of the existing labels for people with albinism express such ideas.

Being black in a white skin: Beliefs and stereotypes around albinism at a South African university

PHATOLI, Relebohile
BILA, Nontembeko
ROSS, Eleanor
2015

Expand view

Background: Partly because of the legacy of apartheid, and despite being a constitutional democracy, South Africa continues to be a deeply divided society, particularly along racial lines. In this context many people with albinism do not fit neatly into black and white categories and are likely to experience social discrimination and marginalisation.

 

Objectives: The study endeavoured to explore the beliefs and practices regarding albinism within a South African university, and the availability of support services.

 

Method: The research was located within an interpretive qualitative paradigm and was framed within the theories of stigma, discrimination and ‘othering’. Interviews were conducted with five students with albinism and 10 students without albinism.

 

Results: Findings confirmed the existence of myths and stereotypes regarding albinism. Students with albinism tended to exclude themselves from the rest of the student community to avoid discrimination and stereotypes around their condition.

 

Conclusion: People with albinism can teach us about social constructions of race, colour and relations between minority groups and the majority culture. Results have implications for schools, disability units at universities, and albinism societies in terms of opening up channels of communication between people with albinism and the general public and fostering knowledge and awareness thereof.

Expanding ableism : taking down the ghettoization of impact of disability studies scholars

WOLBRING, Gregor
2012

Expand view

This paper highlights the utility of an expanded ableism concept beyond how it is used in disability studies; expanding the concept of ableism so it connects with all aspects of societies and making ableism applicable to many academic fields. It introduces this expanded form of ableism as a new angle of cultural research and suggests it to be one possible venue for disability studies scholars to escape the ghettoization of their impact.

 

Societies, Vol 2, Issue 3

E-bulletin