“Other” White Storytellers: Emancipating Albinism Identity through Personal Narratives

Miller, Niya Pickett

doi:10.1080/01463373.2018.1533486

Cited by 3 publications

(6 citation statements)

References 11 publications

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Section: Results: Diffracting and Weaving Storylinesunclassified

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Section: Results: Diffracting and Weaving Storylinesunclassified

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Section: Results: Diffracting and Weaving Storylinesunclassified

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Mapping a research-advocacy-policy agenda on human rights and albinism: a mixed methods project

Reimer-Kirkham,

Astle,

Ero

et al. 2024

Int J Equity Health

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Background Persons with albinism face challenges to their wellbeing, safety, and security, ranging from vision impairment and skin cancer to stigma and discrimination. In some regions, they also face human rights atrocities including mutilation and murder. Research on human rights and albinism is a relatively new field that has gained momentum since the United Nations appointment of an Independent Expert on the enjoyment of human rights by persons with albinism. In this paper, we present the results of a mixed methods study undertaken to identify priorities for research, advocacy, and policy on albinism and human rights. Methods The first component was a synthesis of peer-reviewed and grey literatures at the nexus of albinism, spiritual/cultural beliefs and practices, and human rights. We then conducted a priority-setting survey, informed by Delphi methods, on extant knowledge-practice gaps and research, advocacy, and policy priorities. Inclusion criteria included demonstrated expertise in the field (e.g., peer-reviewed publications, funded research), membership on national or international associations, or advocacy (civil society organizations) of more than 2 years in albinism and human rights. Thereafter, we gathered leading researchers, policy-makers, and civil society stakeholders for a Roundtable to gain consensus on these priorities. Results Access to skin and vision care, and education were not deemed high priority for research, likely because the evidence supporting the need for these is well established. However, they were priorities for advocacy and policy: what is needed is mobilization of this evidence through advocacy and implementation of such services (policy). Other social determinants of health (rurality, poverty, and gender equality) are present as subtext in the findings, more so than priorities for research, advocacy, or policy, despite their preponderance in the lives of persons with albinism. Research was prioritized on stigma and discrimination; advocacy; and witchcraft, but with some differentiation between Global North and Global South priorities. Priorities for research, advocacy, and policy vary in keeping with the explanatory frameworks at play, including how harmful practices and witchcraft are viewed. Conclusions The lived experience of albinism is profoundly shaped by the social determinants of health (SDOH). Threats to the security and well-being of persons with albinism should be viewed through a human rights lens that encompasses the explanatory frameworks at play.

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“…[ 5 – 8 , 10 , 11 , 29 , 30 , 32 , 33 , 35 – 37 , 39 – 45 , 47 – 50 , 53 – 56 , 58 – 62 , 64 – 66 , 68 – 71 , 73 , 75 , 77 – 80 , 125 – 152 ]…”

Section: Results: Diffracting and Weaving Storylinesunclassified

“…[ 2 , 5 – 8 , 10 – 12 , 29 – 40 , 42 – 56 , 76 , 58 – 62 , 64 – 71 , 73 – 80 , 125 – 146 , 148 – 152 , 170 , 179 ]…”

Section: Results: Diffracting and Weaving Storylinesunclassified

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Mapping a research-advocacy-policy agenda on human rights and albinism: a mixed methods project

Reimer-Kirkham,

Astle,

Ero

et al. 2024

Int J Equity Health

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“…In addition to several studies on the fictional representation of albinism (see, for example, Spemba 2023Spemba , 2022Mtenje 2021;Lipenga 2018;Baker & Lund 2017), the scholarly criticisms on life narratives have dealt explicitly with portrayals of subjects with albinism from outside Africa and on topics different from friendship and agency. In her PhD thesis, Un-Othering the Albino: How Popular Communication Constructs Albinism Identity, Miller (2017) examines the identity formation of people with albinism in media. This groundbreaking study is adapted from Miller's (2019) journal article, "'Other' White Storytellers: Emancipating Albinism Identity through Personal Narratives."…”

Section: Introductionmentioning

confidence: 99%

“…In her PhD thesis, Un-Othering the Albino: How Popular Communication Constructs Albinism Identity, Miller (2017) examines the identity formation of people with albinism in media. This groundbreaking study is adapted from Miller's (2019) journal article, "'Other' White Storytellers: Emancipating Albinism Identity through Personal Narratives." The work discusses the counternarrative potential of personal narratives of persons with albinism.…”

Section: Introductionmentioning

confidence: 99%

Sociality and Agency in Mandisi Bongelo’s “I am a Human Being - Flesh and Spirit”

Spemba

2023

Umma

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This article uses the close reading method to analyse Mandisi Bongelo’s narrative, “I am a Human Being—Flesh and Spirit” to explore whether friendship fosters one’s agency. It draws on Lucas’ discussion of loneliness and appearance, particularly her discussion of ontological agency, and the African concept of ‘Igwebuike.’ After all, humans are driven by an insatiable want to connect with others because, via social interactions, people can express who they are and find a place to fit in, which leads to recognition and opportunities for social interactions. For certain people (particularly those that societies see as abnormal or unattractive), forming certain types of social bonds, including friendship and marriage, can be challenging at times, and can lead to a life that is purposeless and lonely. Against this backdrop, the article additionally attempts to ascertain whether friendship has the capacity to undermine negative and discriminatory narratives that marginalise individuals with albinism. In this regard, the article argues that friendship accords those with albinism the ontological awareness, bravery, and self-assurance to act alongside and ahead of those without albinism. Furthermore, social pressures and friendship-based influences can also negatively impact or severely undermine an individual’s agency.

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Introduction

Miller¹,

Platenburg²

2021

Palgrave Studies in (Re)Presenting Gender

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“Other” White Storytellers: Emancipating Albinism Identity through Personal Narratives

Cited by 3 publications

References 11 publications

Mapping a research-advocacy-policy agenda on human rights and albinism: a mixed methods project

Mapping a research-advocacy-policy agenda on human rights and albinism: a mixed methods project

Sociality and Agency in Mandisi Bongelo’s “I am a Human Being - Flesh and Spirit”

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