Trainee Series: The Politics of FASD – Stigma, Inclusion, and Possibility

canfasdblogTrainee ProgramLeave a Comment

Written by Christine Funk, member of the 2024 CanFASD Trainee Program.

As a second-year Master of Arts student in political science at the University of Victoria, my research explores the intersection of advocacy, policy making, and public perceptions surrounding Fetal Alcohol Spectrum Disorder (FASD). Key questions drive my work: How are societal views of individuals with FASD shaped, and what political impacts do these views have on the effectiveness of policies aimed at improving outcomes for those with FASD? 

Personal Connection and Research Motivation 

My connection to this research is deeply personal. I am the eldest sister of three amazing young adults with FASD and the daughter of a dedicated parent advocate. I have also previously worked as a full-time respite worker for several families of youth with FASD.  

I began my FASD research journey by first looking at how my own thinking about FASD has changed over time, which allowed me to get curious about what kinds of unconscious beliefs or stigmatizing ideas might contribute to limiting assumptions about people with FASD and people with disabilities in general. I find that getting curious about our own assumptions and biases frees us to look more closely at how those ideas take shape in society. 

The Politics of Disability 

My interest in political science extends to the politics of disability, not just in terms of policy but also the power dynamics that affect people with disabilities and their communities. In the context of FASD, this involves examining how factors like race, gender, and socioeconomic status influence societal attitudes and treatment of individuals with FASD. These intersecting social systems contribute to significant stigma and discrimination, and even the erasure of FASD from public consciousness. 

The Social Model of Disability 

In the 1970s, disabled researchers and activists introduced the “social model of disability”. The social model suggests that disability is not solely the result of individual impairments but also the product of societal barriers. For example, a wheelchair user is only disabled by an environment that lacks accessible infrastructure, such as ramps or elevators. As a former online publication, Disability Horizons, succinctly put it:  

“Disability is the experience of being a square peg in a round-hole world. And the world is changeable.” 

The social model’s transformative potential lies in its assertion that society, not the individual, bears the responsibility to adapt and remove barriers and promote equity. 

Stigma and Social Barriers 

However, the barriers faced by people with disabilities are not just environmental, they are also social, like harmful stereotypes, stigma, and discrimination, and I want to understand how these concepts play out in the specific context of FASD. As caregivers and advocates are always working against stigma, a multitude of examples likely come to mind. One such example could be an assumption that people with FASD cannot speak for themselves, or that they cannot act independently in their own best interests. This false belief overlooks the diverse strengths and capacities within the FASD community and reinforces stigmatizing narratives, which limit the possibilities of meaningful inclusion and participation for people with FASD. 

FASD stigma is unique in that it may also carry damaging assumptions about a person’s family of origin, and false and discriminatory assumptions about certain communities, including Indigenous and racialized populations. Although FASD can occur in any demographic, these deep layers of stigma intertwine into a knot that creates a false and limiting idea about who people with FASD are, making it difficult to change public perceptions and desire to listen to the voices and knowledge of people with FASD. 

Image: A tangled knot of assumptions.

Stigma Leading to Gaps in Research and Representation

In my research, I have identified a significant gap in how FASD is addressed within political science and other social sciences. “Critical disability studies” is an approach to social science research that offers valuable insights into the intersecting social and political aspects of disability, providing a useful tool for thinking through the knot of assumptions, yet FASD remains underrepresented. Despite growing social science research on other intellectual disabilities and neurodiversity, FASD seems to be overlooked. Why, I wonder? Further, why are there so few “living experience” social science studies about FASD?  

This erasure extends to research, media, policy making, and even disability advocacy, where FASD is sometimes deliberately excluded. Through my research, I suggest that the knot of stigma around FASD contributes to an unwillingness to approach it, and a devaluing of the knowledge of people with living FASD experience.  

Undoing the Knot: “Nothing About Us Without Us”

However, this “knot” of stigma can be undone. Organizations like CanFASD are making strides in combating stigma by adopting a Strengths-Based Approach, centering lived experience, and ensuring that individuals with FASD are leaders in research and advocacy. 

A core principle of the disability rights movement is “nothing about us without us.” This means not only including people with disabilities in advocacy and research but also following their lead and valuing their knowledge. This path of inclusion challenges traditional notions of knowledge value, authority, and expertise, promoting a more equitable and understanding society. 

In the context of FASD, embracing this principle directly challenges stereotypes about the capabilities of individuals with FASD. By centering the knowledge and leadership of people with FASD, we can work collaboratively to build a more inclusive world. 

Moving Forward: Reflecting and Improving 

As I move forward in my research, my next step is to look within and reflect on how those within the FASD community, including researchers, advocates, and caregivers, might unintentionally contribute to the barriers faced by individuals with FASD. Are there ways that other voices overshadow those with FASD? Do certain narratives perpetuate limiting assumptions? 

The FASD community is filled with dedicated individuals working towards a common goal, often motivated by personal connections. My objective is to support this community by identifying where language, ideas, and practices might inadvertently reaffirm some of the assumptions in the knot, ultimately working to expand the possibilities we can imagine together with people with FASD. 

Key Take Aways:  

  • Disability, inaccessibility, and exclusion are shaped by power dynamics and social forces, including discriminatory ideas and practices.  
  • Despite ongoing efforts to promote “living experience”, the voices of people with FASD are still underrepresented in research and advocacy. 
  • Ideas about FASD can be shaped by a complex knot of stigma and assumptions. 
  • The knot, and the erasure it causes, may continue to impact how people with FASD are understood and engaged with at both an interpersonal level and at a systems-level. 
  • Allied advocates, researchers, and loved ones work to support the inclusion of people with FASD by valuing and centering their knowledge, and ensuring it is heard by others. 

Sources and More Information: 

Christine Funk is a second year Master of Arts student, studying political science at the University of Victoria. She previously completed a Bachelor of Arts in political science at the University of Alberta, where she first began to research the politics of FASD. Christine’s approach to FASD research is grounded in lived experience, as her three youngest siblings are affected by FASD. Christine’s research centres disability justice and meaningful inclusion, and explores how these are impacted by commonly held understandings (or misunderstandings) of FASD that are shaped over time by various forms of advocacy.

Christine is particularly interested in the intersection of lived-experience advocacy and policy making – she is curious about policy makers’ willingness to hear and engage with the expert knowledge of those with lived experience, as they develop policy solutions that seek to improve outcomes for people with FASD. Her presentation discusses her current thesis research, which examines the inclusion of self-advocates with FASD in FASD advocacy communities and across similar movements for disability justice and inclusion more broadly.

Leave a Reply