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.

'What works' to ensure persons with disabilities have access to sexual and reproductive health services

Itad
June 2020

Expand view

A growing body of evidence shows that people with disabilities have historically been denied their sexual and reproductive health rights, despite having the same sexual and reproductive health needs as people without disabilities, and continue to face many barriers to accessing these lifesaving services.

This evidence gap map, developed as part of the UK Department for International Development’s Women’s Integrated Sexual Reproductive Health (WISH) programme, collates evidence on ‘what works’ to enable access to sexual reproductive health services for persons with disabilities in low and middle-income countries.

Abortion and disability: Towards an intersectional human rights-based approach

WOMEN ENABLED INTERNATIONAL
January 2020

Expand view

Ongoing debates around fetal impairment as a legal basis for abortion act as a wedge issue between the disability rights and reproductive rights movements. Disability rights advocates are concerned that laws that expressly permit abortion on grounds of fetal impairment codify the notion that disabled lives are worth less than non-disabled lives. Reproductive rights advocates are concerned that reforming abortion laws to remove fetal impairment grounds—or to expressly ban abortion in the case of a fetal impairment diagnosis—will result in less access to safe abortion and exacerbate the attendant human rights consequences. These tensions are fueled both by advocacy strategies to advance abortion rights that can reinforce harmful disability-related stereotypes and by opponents of abortion rights co-opting disability rights language to impose greater restrictions on abortion access.

Women with disabilities, who live at the intersection of these two movements, care deeply about both protecting reproductive autonomy, including the right to access safe abortion, and dismantling harmful disability-related stigma. Too often, however, their voices are left out of the debate. To remedy this lack of voice and representation in these ongoing debates, Women Enabled International (WEI) conducted a series of consultations with 40 persons with diverse disabilities, who have the biological capacity to become pregnant, and who advocate at the intersection of gender and disability. These consultations provided a safe space in which these advocates from around the globe could discuss specific concerns around this historic tension.

In this framing document, WEI identifies the primary concerns of the women with disabilities who participated in these consultations—as well as the primary concerns of the disability rights and the reproductive rights movements, analyzes the human rights standards that underpin this debate, and applies an intersectional human rights-based approach to posit a way forward.

The nation’s body: disability and deviance in the writings of Adolf Hitler

BENGTSSON, Staffan
2018

Expand view

This article takes its starting point in the Nazi ideology as it appears in the writings of Adolf Hitler, and discusses how disability and the body can be understood in the context of Mein Kampf. The article underlines how disability and bodily infirmities, alongside race, featured significantly in Hitler’s demagogic message. Although the overall image of disability was related to a sense of threat – and a culture gone wrong – Mein Kampf also contains a mixed interpretation of disability as a phenomenon, in which different and opposing disability narratives took part in the construction and the image of the body as a national property.

A world without Down’s syndrome? Online resistance on Twitter: #worldwithoutdowns and #justaboutcoping

BURCH, Leah
2017

Expand view

Presented by actress and comedian Sally Phillips, A World Without Down’s Syndrome has brought important ethical debates regarding prenatal screening into the public domain. By talking to people with Down’s syndrome, family members, and professionals, Sally has presented a nuanced and thorough examination of the type of world we are living in. Following the documentary, Twitter users have continued to engage with debates and have created a resilient platform for challenging public attitudes. This paper explores the ways in which Twitter hashtags have provided a space for such important and long overdue conversations. While it would not be possible to provide a full overview of the topical conversations that the two hashtags have provoked, I aim to focus on some of the most prominent topics. The following, then, will explore the potential of alternative narratives that resist, and disrupt, normative notions of the human using the hashtags #worldwithoutdowns and #justaboutcoping.

E-bulletin