A recent event held at the University of Regina brought together families, people with FASD, frontline workers, policy makers and researchers to discuss Fetal Alcohol Spectrum Disorder (FASD). This event focused on creating a space for collaboration in the area of research with a focus on the perspectives of those with FASD and their families. The event included discussions in four key areas including: (1) aging, (2) FASD as a whole body disorder, (3) effective supports and services and (4) advocating for effective community supports and services.
The President of the University of Regina, Dr. Vianne Timmons, spoke about her own experiences assisting her daughter, Kelly, who lives with FASD. Vianne struck a chord with the audience as she shared her story. She then took her message to the media, a message about the challenges of growing up with the disability and the ways in which stigma impacts the lives of families and those living with FASD. In a local paper she indicate: “To come out and say, ‘I have a child with fetal alcohol [spectrum] disorder’, people are going to jump to the conclusion that you’re an alcoholic or your child is adopted. They make that immediate jump. It’s challenging for many of the parents to maneuver through that’ she said.”
The “immediate jump” that she speaks of is central when discussing FASD and stigma. FASD is a disability and while many (or some might say most) people who live with a disability might experience stigma, the stigma that surrounds FASD is particular. It is a stigma that indicts mothers and families and punishes individuals.
The stigma that surrounds the disability is ranked and has a hierarchy. Without a doubt the highest level of judgment and blame is levelled on birth moms. To call this stigma is to be generous as it about judgment and anger. Judgment and anger that is borne out of presumptions about prevention and ignorance to trauma; it also evidences the lack of understanding around the contexts within which FASD might come about. If we are going to breakthrough the various levels of stigma that exist about FASD we need to reorder the language used and the suppositions about this disability. As Vianne Timmons outlines in the article, her daughter is not a list of failures: her daughter is a vibrant young woman. We need to not see FASD as a long acronym for failure. We must reframe the languages of prevention and we need to stop assigning blame.
To state that FASD is 100% preventable is not accurate and that inaccuracy fuels stigma. The reality is that women will drink. Of those women who drink, only a small fraction will know in the opening days that they are pregnant. Moreover we start to have conversations about the structural inequalities that face many women—inequalities that can produce crisis and trauma. To say FASD is 100% preventable is a falsehood that is meant to give us a sense that we can “beat” FASD. Instead of filling ourselves up on false concepts about a disability, which can fuel judgment and stigma, let’s turn more of our collective attention to better supporting moms and families of those that are living with FASD. Let’s combat the stigma and “immediate jumps” that make some parents feel the need to say their kids are adopted so they can deflect the blame. Let’s take more time figuring out how to make our communities and programs more inclusive—to support not indict. Stigma comes in many forms and is the result of many things. Let’s reframe the discussion about prevention and perhaps we can start to impact the immediate jump that people make when they link drinking, addiction and disability. Moreover, we need to more actively listen to parents and caregivers as they explain the experiences of stigma so we can better understand the layers so as to address the practices that fuel this vicious form of judgment.
This web page is a product of Dr. Michelle Stewart’s research team from the University of Regina. This research has been made possible by the support of the Social Sciences and Humanities Research Council, University of Regina and Canada FASD Research Network. For questions and/or comments regarding the research project or about upcoming events please feel free to contact us. Dr. Stewart is at the Strategic Lead for Justice Interventions with Canada FASD Research Network, the Director of the Community Research Unit, she is also an research affiliate to the Indigenous Peoples Health Research Centre and Saskatchewan Population Health and Evaluation Research Unit.