The role of stigma in the diagnosis and treatment of FASD in Indigenous communities

One of the most important issues that needs to be addressed when considering the provision of FASD services in an Indigenous community context has to do with a resistance within Indigenous communities to the way FASD is framed in the present medical model. Often this is posed as an issue about lack of culturally sensitive norms or assessment tools, but the issue is deeper than this.

In traditional terms the disorder we now call FASD might be considered as “a disordering”.  There is a breakdown in relationship between mother and child that links with the breakdown of social relationships to self, family, community and larger society.

Noel Milliea, one of the traditional healers who is part of the Eastern Door Diagnostic team, suggested a different way of looking at FASD by framing it in relation to a circle (rather than a grid) and considering it as a system disorder as well as an individual one.

When the condition of FASD is framed in this way there is no stigma involved to the affected individuals, the mothers, families and communities. This is not the case when FASD is considered through the lens of the present medical model. In the medical paradigm, FASD tends to be perceived as the “mother’s fault”. For example, one article in a physician’s journal stated: “by exposing the fetus to a teratogen the mother is causally, and arguably morally, responsible for the outcome.”

This way of thinking stigmatizes the mother and so leads to resistance in terms of accessing FASD diagnostic services for her child or even disclosing pre-natal alcohol use (even if she drank before she knew she was pregnant or was told by her physician that moderate drinking wouldn’t harm her child). In Canada, the Indigenous population as a whole now carries the “stigma” of FASD.  The ethical implications of misinformation found in more traditional medical paradigms are serious, hindering progress and empowerment by generating resistance and discomfort within Indigenous communities. The Ontario Federation of Indian Friendship Centres reports that the stigma associated with FASD and aboriginal people is working to silence Indigenous voices about FASD:

This erroneous characterization has not only negatively affected the mainstream understanding of Aboriginal health and community, but has also inhibited the progress of FASD research and strategy development…….

The reality is that adequate FASD service delivery is a serious health problem in both Indigenous and non-Indigenous communities in Canada; however, Indigenous communities (and individuals living in them) are particularly disadvantaged because of the “disproportionate hardship that they experience in relation to the social determinants of health” and the lack of access to the services they need:  

Colonization and assimilation practices have resulted in high rates of mental illness, addiction, homelessness, poverty, unemployment, incarceration, poor physical health, and community and familial dysfunction….Many individuals do not have access to the holistic services that would help them to cope with the social isolation and experiences of violence and abuse that can arise from these issues. Together, these consequences of a shared history of trauma embody the underlying, or ultimate, causes of FASD in Aboriginal communities, and must be addressed with culturally appropriate methods that foster cultural reintegration, personal and collective healing, and positive change. FASD is a product of socioeconomic status rather than race or culture and as long as a national or provincial strategy does not exist…….Aboriginal people affected by FASD will go without the culturally appropriate, wholistic, and self-determined supports and resources that they need to ensure positive health outcomes and an optimal quality of life.

Research has showed that system inequities in Canada in regard to Indigenous health are the root cause of health disparities. In this light, FASD service delivery to Indigenous people - whether diagnosis, prevention, or intervention - implies a system focus and also identifies a system responsibility. This approach, with its focus on prevention and healing, suggests that all levels of Canadian government should work together actively. This creation of health systems prevention and healing would, in turn, help provide access to culturally informed FASD diagnostic services and to the social, economic, physical, and spiritual accommodations that are needed by affected individuals and families to deal with FASD and related disabilities.