Negotiating political power and stigma around fragile X Syndrome in a rural village in Cameroon: A tale of a royal family and a community.
Negotiating political power and stigma around fragile X Syndrome in a rural village in Cameroon: A tale of a royal family and a community.
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DOI：
10.1002/mgg3.1615
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发表时间：
2021-03
影响因子：
2
通讯作者：
De Vries J
中科院分区：
文献类型：
--
作者：
Kengne Kamga K;Munung NS;Nguefack S;Wonkam A;De Vries J
脆性 X 综合征 (FXS) 是一种神经遗传疾病，由于与智力障碍 (ID) 和耻辱有关，因此会严重影响受影响个人及其家人的生活。在本文中，我们介绍了在喀麦隆接受 FXS 基因诊断的患者社区中进行的人种学研究结果。这项研究基于 28 名王室参与者和 58 名社区参与者的数据，他们参加了 20 次深度访谈和 9 次焦点小组讨论。我们发现这个社区存在两种类型的耻辱：针对王室的公共耻辱和王室成员所经历的联想耻辱。我们概述了对患有脆性 X 综合症的家庭及其孩子的刻板印象标签，并描述了社区成员和王室之间的耻辱权力动态。首先，由于 FXS 的社会地位，大多数村民在称呼 FXS 酋长的孩子时使用的侮辱性词语较少。其次，由于其社会地位，王室利用其地位与社会成员谈婚论嫁。从这些观察中，我们可以表明，耻辱在这个社区中的主要作用是让人们远离 FXS，并通过统治和剥削来压制他们。我们主张其他研究人员检查其他可遗传形式的智力缺陷是否存在相同的模式，并对非洲的 FXS 进行更多定性研究。在本文中，我们介绍了在喀麦隆接受 FXS 基因诊断的患者社区中进行的人种学研究结果。这项研究基于 28 名王室参与者和 58 名社区参与者的数据，他们参加了 20 次深度访谈和 9 次焦点小组讨论。我们概述了对患有脆性 X 综合症的家庭及其孩子的刻板印象标签，并描述了社区成员和王室之间的耻辱权力动态。首先，由于 FXS 酋长的孩子在社会中的地位，大多数村民会使用不那么带有侮辱性的词语来称呼他们。其次，由于其社会地位，王室利用其地位与社区成员谈婚论嫁。
Fragile X Syndrome (FXS) is a neurogenetic condition that significantly impacts the lives of affected individuals and their families due to its association with intellectual disability (ID) and stigma. In this paper, we present the findings of an ethnographic study in the community of a patient who received a genetic diagnosis for FXS in Cameroon. This study builds on data from 28 participants of a royal family and 58 from the community who participated in 20 in‐depth interviews and nine focus group discussions. We identified two types of stigma in this community: public stigma directed towards the royal family and associative stigma experienced by royal family members. We outline the stereotyping labels used for the family and its children with Fragile X Syndrome and describe the stigma‐power dynamic between the community members and the royal family. First, most villagers use less stigmatizing terms to addressing FXS children from the chieftaincy because of their position in society. Secondly, due to their social position, the royal family uses their status to negotiate marriages with community members. From these observations, we can suggest that the primary role of stigma in this community is to keep people away from FXS and keep them down through domination and exploitation. We advocate that other researchers examine if the same pattern exists in other inheritable forms of ID and conduct more qualitative research on FXS in Africa. In this paper, we present the findings of an ethnographic study in the community of a patient who received a genetic diagnosis for FXS in Cameroon. This study builds on data from 28 participants of a royal family and 58 from the community who participated in 20 in‐depth interviews and nine focus group discussions. We outline the stereotyping labels used for the family and its children with Fragile X Syndrome and describe the stigma‐power dynamic between the community members and the royal family. First, most villagers use less‐stigmatizing terms to address FXS children from the chieftaincy because of their position in society. Second, due to their social position, the royal family uses their status to negotiate marriages with community members.
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