Social Stigma Against Fragile X Used For Political Gain in Rural Cameroon
In a rural village in Cameroon, in West Africa, social stigma against those with intellectual disabilities such as fragile X syndrome exists in an uneasy relationship with a deeply ingrained tradition of deference to social status, according to a new ethnographic study.
A group of researchers studying this phenomenon suggest that other investigators should explore whether the same pattern exists elsewhere and in relation to other heritable forms of intellectual disability.
“Intrigued by the coexistence of traditional narratives to explain the inheritance of this severe condition [fragile X] and a modern genetic diagnosis, we sought [one patient’s] permission to conduct a qualitative study with her family and member[s] of the community, to better understand how people in a rural African setting make sense of genetics and inheritance,” the team wrote, adding that they also sought to examine social stigma and “how this condition had affected the family and the community.”
Their study, “Negotiating political power and stigma around fragile X Syndrome in a rural village in Cameroon: A tale of a royal family and a community,” was published in the journal Molecular Genetics & Genomic Medicine.
Fragile X is the leading genetic cause of autism spectrum disorders, but there is a variability of symptoms among its patients, researchers note. Individuals living with fragile X — which is associated with cognitive impairment, learning and behavioral challenges, and several differentiating physical features — can face various forms of stigma and prejudice from their communities.
Researchers from the University of Cape Town, in South Africa, found themselves drawn to a Cameroonian community with a high incidence of fragile X syndrome, centered on its royal family. In this village, traditional narratives — such as “curses, disease, dependence, and helplessness” — are used to explain intellectual disability alongside modern genetic diagnostic methods.
Boasting about 2,000 inhabitants, this village in rural western Cameroon is known to have an overall high rate of intellectual disability, directly affecting members of the royal family, part of the “chieftaincy.” In 2020, 46 members of the royal family were screened for fragile X and 18 of them were found to harbor a mutation in the FMR1 gene.
In an effort to gain a better understanding of how fragile X had affected both the royal family and the community, the investigators — several from the university’s division of human genetics — conducted a series of interviews with members of the chief’s family and the other residents.
While stigmas regarding mental disability can often result in social isolation for the disabled, the researchers found that the royal family leverages its status to arrange marriages for its affected members, essentially using these individuals to maintain the existing power structure.
In essence, some community members overlook their prejudice against intellectual disability for a chance to gain social status, thereby reinforcing an existing power structure and creating divisions in the community regarding how to treat the mentally disabled.
“This creates a stigma-power dynamic between the royal family and [the] community,” the investigators wrote.
Such divisions are evident in how members of royalty with fragile X are referred to in the community, as compared with non-royal residents with similar conditions.
For instance, a common local word for the intellectually disabled is “peuh,” meaning “fool,” or an “insane” person. The word carries a negative connotation that such a person is beyond care. In contrast, many in the community refer to royal family members with fragile X with the more deferential “rheureuh,” which implies someone who is different from others.
Rheureuh, the investigators explain, “is ‘better’ than ‘peuh’ since you can take care and support a ‘rheureuh’ until he/she even gets married while you cannot do anything for a mad man.”
Interestingly, this distinction is maintained out of deference to the “moral status” of the royal family — despite the royals’ practice of intentionally keeping its sons’ fragile X condition hidden from potential in-laws when arranging marriage.
“In most marriages with this royal family, the disability is mostly discovered only after marriage,” the researchers wrote. “According to local custom, it is difficult to untie a bond that has been made traditionally because of the shame that could occur.”
Such local customs in some cases reinforce the deference paid to the royal family.
On the other hand, however, there appears to be a history of community members who had sought but failed to gain entry into the royal family using the stigma against intellectual disability to defame, or disparage the royalty, potentially weakening their position in society.
In both cases, persons with fragile X are exploited for political purpose.
The investigators describe their research as making progress in understanding the stigmas related to fragile X in a rural African community, and how such stigmas play out.
“We have described a complex stigma-power dynamic between the community members and the royal family,” they wrote.
Notably, that dynamic occurred even within the royal family itself, according to researchers.
“There were a few instances where family members emphasized their superiority to other family members with a lower IQ,” they wrote.
The clinical implications of this study include the attempt to reduce disease-related stigma, according to the researchers, who noted that “to reduce stigma, we must have a thorough understanding of stigma’s function.”
“The identification of stigma is essential because the stigmatized individuals develop coping strategies to become resilient. The coping strategies can be improved by the education of the people surrounding them,” the researchers wrote.
“Also, offering early genetic counseling for [fragile X] and psychotherapy services through peer support groups to families at risk of experiencing stigma can provide emotional support,” they wrote.
The question posed by researchers is whether similar patterns would be found in other countries.
“Given that this is the first qualitative study exploring stigma related to [fragile X] in Cameroon, we advocate that other researchers examine whether the same pattern exists in other inheritable forms of [intellectual disability] and conduct more qualitative research on [fragile X] in Africa,” the researchers concluded.