Attack being waged on FASD

Marilyn Van Bibber is a Northern Tutchone from the Selkirk First Nation near Pelly Crossing, Yukon who has had an important impact on the lives of many Aboriginal people.
Van Bibber, armed with a diploma in nursing and a certificate in midwifery, has served northern Native communities for some 25 odd years, and with a number of university courses in political science and sociology under her belt, she has also helped out in the land claim arena.

In her years of nursing, she has seen it all, but one problem came to haunt her-the misery that comes from women drinking while pregnant. Fetal Alcohol Spectrum Disorder.

As the name implies, FASD encompasses an array of disorders from outright alcohol syndrome (FAS), with its distinctive facial deformities, to more elusive defects. FASD is one of the major birth defects, being 10 times more common than HIV, muscular dystrophy, spina bifida, and Down syndrome combined. Children and adults with FASD can have a variety of physical and emotional problems. They exhibit poor judgment and are often in trouble, with schools and with the law.

And the tragedy of it is that FASD is 100 per cent preventable. The cause is drinking while pregnant. No alcohol during pregnancy means no FASD.

Van Bibber has seen the destruction caused by FASD, and she has committed herself to do something about it. She was the principle author of "It Takes a Community," an FASD prevention publication used by Health Canada, and she is involved with researchers from several universities in a community development undertaking to arm Native people with a weapon to fight this scourge.

Funded by the Canadian Institute of Health Research-Institute of Aboriginal People's Health, the group worked for three years in a collaborative effort with four Native communities, one urban and one reserve each in British Columbia and Ontario.

Local staff were recruited, trained in research procedures, and asked to develop their own research design to come up with a method of prevention in their own communities.

Marilyn Van Bibber was excited by this kind of communication with First Nations.

"It gives the people the opportunity to be heard," she said. "The answers are in the community, and this approach gives the community the opportunity to find them."

She described an uphill battle to get Native acceptance of research because of the legacy of how research was done in the past. This undertaking built a local capacity and developed local leadership. And more to the point, it got people talking about FASD.

As well, she noted, it also helped the universities involved in the project to better understand communities and of the context in which FASD occurs.

As Paul Masotti of Queen's University in Toronto put it in an article about the project published in the journal PloS Medicine:

"Academic researchers contribute technical knowledge about evidence and research methods, whereas community-based partners bring valuable Indigenous knowledge about the background of the issue, the politics of the community, and what is feasible. Respecting and blending the contributions of both partners is vital to successful collaboration."

The goals of the effort were to develop culturally appropriate FASD interventions that fit in the particular community and, as well, to develop local capacity to deal with public health issues more generally.

One of the communities included in this undertaking is the Pic River First Nation in Ontario. According to Erica Penna, the community's health director, her community is going ahead and implementing the design developed in the research. The approach they chose is to contact new mothers shortly after giving birth to prevent FASD in future births.

"That is when women are most susceptible to change," she said. Their screening tool looks at social factors that lead a woman to drink while pregnant. Does her partner drink? Did other people offer her alcohol when they knew she was pregnant? And so on.

The problem now, according to Penna, is how to spread this gospel of prevention. It is too important to be restricted to just four relatively small communities. What is needed is the further involvement of the grass-roots people who developed local programs, putting them to work in more communities.