Summary
Poverty, inequalities, and intergenerational trauma are, among several other factors, the causes of Fetal Alcohol Spectrum Disorder (FASD). These can lead individuals, families, and communities to experience multiple intersecting layers of stigmatization, discrimination, and exclusion. Through collaborative, participatory research (e.g., photovoice, community cafes), we generated conversations with lived experience people, family members, cross-sectoral service providers, and communities. The knowledge and experiences shared through this method helped us understand how community-inclusive-mobilization approaches can overcome stigma and promote dignity. We approached this topic through a reflective narrative format that creatively weaves together critical, feminist, intersectionality, anti-colonial, anti-oppressive and social justice frameworks to co-create knowledge and explore possibilities for future actions. As a result, we identified and named essentialized narratives and stigmatizing labels often imposed on lived experienced and communities affected by FASD. These findings helped to build the connection between social inequalities and FASD while proposing a community mobilization and inclusion approach to promote dignity, the 'Reverse Co-construction Framework to promote dignity' that challenges the 'dominant Biomedical Perspective' of FASD. The methods became participants' tools to amplify their voices to shift public perspectives away from stigmatizing to attitudes and actions that support the dignity of people with FASD. These tools provide relationship-building opportunities for caregivers and service providers working with people with FASD in different capacities to include, connect and share knowledge and resources. They invite reflection, reimagining and redefining what FASD means to lived experienced people, their significant others, service providers and the community. This presentation will share this research project's process, stories and findings. It will also provide our perspective on community mobilization and inclusion to promote dignity. We conclude by identifying ongoing tensions and suggest shifts of paradigms to expand a dignity community of practice (CoP) beyond the traditional practices labelled just for FASD.
Keywords (separate with commas)
Poverty, Inequality, Intergenerational Trauma, Fetal Alcohol Spectrum Disorder, Stigma, Dignity, Community Mobilizing Inclusion, Photovoice, Community Cafe, Participatory Research
