Living a “normal” life. Perceptions and practices of albinism in the wake of humanitarianism (original) (raw)
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Labeling albinism: language and discourse surrounding people with albinism in Tanzania
Disability and Society, 2015
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 little knowledge of the (bio)medical explanations for albinism and tended to marginalize people with albinism. Framed within a wider moral discourse on illness, 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.
AM Rivista della Società Italiana di Antropologia Medica/ Journal of the Italian Society for Medical Anthropology, 2020
After the spread of media news about the attacks against people with albinism in Tanzania, humanitarian activism and media debates have accelerated the emergence and production of discourses about people with the condition in the country. Victimhood,deservingness and equivalence of albinism with disability represent three of the most recurring media and humanitarian narratives. Based on data collected over 19 months of fieldwork in Tanzania, the present article explores how discourses and ideas about albinism have circulated among and been reformulated by people with albinism to deconstruct shared conceptions of normalcy and affirm their agency in the Tanzanian public arena. The ethnographic material shows in which multiple ways the intertwinement of global actions and everyday practices related to albinism have strengthened already-existing political subjectivities, (re)shaped political claims, and articulated ideas of (dis)belonging.
People with Albinism and Humanitarian NGOs in Tanzania: Identities between Local and Global Worlds
This photo essay discusses the interactions between international and national non-governmental organizations (NGOs) and governmental organizations on the one hand, and local populations and people with albinism on the other, in Tanzania. From the mid-2000s onward, international attention started to be drawn to the aggressions toward, and the murders of, people with albinism in the northwestern part of Tanzania (Ntetema 2008). To date, around 74 individuals with the condition are said to have lost their lives (Smith 2015; Mlacha 2015; Shigongo 2015). Since the increase in attention to such issues, national health organizations as well as international NGOs have begun to carry out awareness campaigns on behalf of people with albinism. At the same time, they have implemented humanitarian aid programs, distributing sunglasses and sunscreen. Some organizations have also distributed grants and scholarships to allow people with albinism to pursue their education. The following essay presents connections between these supra-local actors who are participating in the global flow of (bio)medical and human rights campaigns about albinism, and persons with albinism themselves who, instead of simply being passively exposed to such discourses, actively appropriate them in the making and remaking of their identities. In this regard, people with albinism capitalize on the global flow of (bio)medical and human rights campaigns on their behalf in order to enhance their inclusion within their families and local communities, while attempting to redefine ideas of normalcy and able-bodiedness in Tanzanian society at large. At the same time, this process of appropriation incorporates previous conceptions of albinism derived from religious explanations, especially at the rural level, which has not been deeply reached by governmental and international awareness campaigns.
Perceptions on People with Albinism in Urban Tanzania: Implications for Social Inclusion
Journal of Advocacy, Research and Education, 2018
This article analyses the perceptions of people from urban Tanzania about individuals with albinism. It attempts to evaluate people's understanding of albinism, their attitudes towards individuals with the condition, and perceived reasons for their inhumane treatment. The findings reported in this article were gathered from forty-seven participants from Dar es Salaam region who were purposefully selected for the study. Face-to-face semi-structured interviews and open-ended questionnaire were used for data collection. Findings have indicated that to a larger extent, respondents had a poor understanding of albinism. However, on the average they felt comfortable having individuals with the condition around them. Nonetheless, respondents also had mixed responses regarding marrying people with albinism. Congruent with the existing literature, the murder are linked to superstitious practices and negative beliefs. In advancing the available literature, a discussion of these findings is...
Albinism: Awareness, Attitudes and Level of Albinos’ Predicament in Sukumaland, Tanzania
In Tanzania, persons with albinism (PWA), continue to be less valued, rejected, attacked and killed for ritual purposes. This study examined the situation of PWA and their households resulting from killings and attacks on them. Specifically, the study assessed the level of awareness, attitudes towards albinism and PWA and level of predicament felt by members of households with PWA. An albinism understanding test and attitudinal scales (Likert and Semantic differential scales) were used to determine attitudes towards albinism and level of dilemma felt. A linear regression model was used to determine the impacts of various variables on the level of predicament. Knowledge on albinism was found to be moderate. Levels of awareness were significantly associated with respondents’ age (p = 0.004), sex (p = 0.017), education level (p < 0.0001), religion (p < 0.001) and ethnic group (p = 0.025). Four-fifths of the respondents (80%) had negative attitudes towards albinism and PWA. Unfavourable attitude was highly associated with education level and occupation (p < 0.001). Level of PWA predicament was higher among household members being significantly impacted positively by level of albinism awareness (β = 0.500), but negatively impacted by attitude towards albinism (β = -313) and age (β = -0.191). Age, education, sex and belief determined level of knowledge on albinism. Education level determined attitudes of respondents. Albinism awareness determined the level of predicament felt. The fight against negative beliefs and attitudes towards albinism requires properly designed albinism awareness creation program.
JOURNAL OF CONTEMPORARY AFRICAN STUDIES, 2023
People with albinism in sub-Saharan African countries have long struggled for equal rights and the understanding of society at large, fighting stigmatisation and, in numerous cases, for their lives against wrongdoings in the form of killings and other physical atrocities. This article examines the Tanzanian context and adds to the ongoing academic discourse by presenting tangible manifestations of awareness-raising and education in village communities. It summarises the efforts and results of NGOs in Northern Tanzania working with and run by persons with albinism (PWAs) and presents an analysis of both success and failure. It highlights the work of the NGO named Peacemakers for Albinism and Community (originally Albino Peacemakers). The article argues that safeguarding the vulnerable groups of PWAs remains a task at all levels of society, from remote villages via central governments to the international community; therefore, educating people about this conditioneven PWAs themselves carries the highest relevance.
Lifelong Agony Among People with Albinism (PWA): Tales From Lake Zone in Tanzania
Journal of Social and Political Sciences, 2020
A qualitative study conducted in the northern regions surrounding Lake Victoria in Tanzania, reveals that, People with Albinism (PWA) have been harshly treated for long. Mothers were required to terminate lives of their abnormally born infants (like albino infants). Besides lifelong challenges due to albinism condition, people searched for their body parts even after "being hidden" in unmarked graves after their deaths. Beliefs fuelling such ill-treatment on PWA are deep rooted and intertwined among peoples' mind under influence of cultural beliefs existing for several decades. Proper approach should be designed for permanent solution of the long existed inhumane practices against People with Albinism.
Heliyon
Background: Albinism is a genetic condition caused by a deficit in the production of the pigment called melanin, which protects the skin against ultraviolet light and provides the skin with its color production. The condition may predispose persons with albinism (PWAs) to lifelong physical and health problems, such as visual impairment and ultraviolet induced skin damage. Due to this condition, we explored the challenges faced by persons living with albinism as they socialize in Lilongwe District, Malawi. Method: The study adopted an interpretative phenomenological approach and included 30 participants comprising 13 females and 14 males with albinism and three key informants from Association of People with Albinism in the Lilongwe district in Malawi. Data were collected through in-depth interviews and focus group discussions. Van Manen's (2014) six steps of phenomenological analysis was used to analyze all data. Results: People with albinism face a variety of problems, the most common of which are financial constraints, health complications due to a lack of adequate medical care, a lack of community support leading to stigma and discrimination, and superstitious beliefs. Conclusions: People with albinism suffer socially as a result of misconceptions, behaviours, social isolation, labelling, and beliefs that are negatively correlated with their disorder. PWAs face these problems as a result of public misunderstanding about albinism.
Albinism in Tanzania: a Human Rights Issue. An Experience of Monitoring the 'White Blacks'
This study provides a critical analysis of the current situation faced by people with albinism in Tanzania. It considers the problems daily faced by them and has the ultimate goal of demonstrating that these individuals do not enjoy the same rights as other people. The surplus value of this work is to be based on a research on the field and to be inspired on Human Rights Monitoring principles and techniques.
Open Journal of Social Sciences, 2020
Assessment on factors associated with negative attitudes towards people with Albinism was conducted in northern part of Tanzania specifically in regions where higher incidences of albinos' killings were recently observed. A total of 156 respondents from households living with persons with albinism were involved in this study. Qualitative responses describing attitudes on albinism and people with albinism were transformed into numerical values (using a five points Likert Scales) to allow statistical computation. Measures of association and effect between several independent variables and the dependent variable were done using multiple linear regression analysis. Higher proportion of those interviewed (80%) had negative attitudes towards albinism and people with albinism (PWA). In this study, education level determined attitudes of respondents whereby unfavorable attitudes were highly associated with education level and occupation of respondents (p < 0.001). Relationships between education, attitudes and awareness on albinism confirm the liberalizing effect of education on attitudes and general awareness. Widening the understanding on albinism will help on abandoning cultural beliefs related to albinism and its cause.