Listen to lived experience
People living with Fetal Alcohol Spectrum Disorder (FASD), their families and communities are sharing their stories to help raise awareness and increase understanding.
Community stories
Meet people living with FASD, families, carers and supporters helping to lead Red Shoes Rock.
April’s story
For April, good support starts with listening. She believes young people with FASD should be recognised for what they can do and be included in decisions about their lives.
Bernadette’s story
Bernadette wants families caring for someone with FASD to know they’re not alone. She shares how a simple question led to answers, support and a greater understanding of her son’s needs.
Cass’s story
For years, Cass searched for answers to better understand her foster son’s needs. A FASD diagnosis helped provide clarity, understanding and a path forward.
Fetal Alcohol Spectrum Disorder (FASD) affects people, families and communities across Australia.
As part of the global Red Shoes Rock FASD Awareness Month campaign, FARE aims to give voice to lived and living experience perspectives and support greater awareness and understanding of FASD. The intention is to share a range of experiences of FASD, including the challenges people and families can encounter, while acknowledging the stigma that can make sharing these experiences publicly difficult.
Participation is entirely voluntary. The stories shared through this project reflect the experiences of the people who chose to participate, in response to a publicly shared expression of interest process, and do not represent the full diversity of people, families and communities affected by FASD. No single campaign or form of storytelling could do so.
The ways people may choose to share FASD experiences are shaped by culture, community, history, stigma, and experiences of systems and services. For some, public storytelling may not be the most appropriate, safe or effective form of advocacy.
As the project grows, FARE will continue to build and strengthen relationships with organisations, advocates and communities across diverse cultural, faith and gender backgrounds. We recognise that meaningful engagement starts with listening and relationship-building, rather than recruitment into a predetermined campaign or approach.
This means creating enough time and space for people and communities to shape what safe, culturally appropriate and meaningful FASD advocacy looks like for them, including whether, when and how lived experience stories are shared publicly.
FARE’s aim is to continue creating self-determined and opportunities that are as safe as possible for individuals, families, carers and communities to shape public awareness and understanding of FASD and how it is addressed in Australia.
Each person sharing their story, shares opinions based on their experiences in their own language at the time of filming. If you have questions about FASD diagnosis and support please reach out to your health professional, FASD Hub or NOFASD Australia.
Thank you to everyone who has contributed.
This project was led by FARE, with Morgan Cataldo supporting the lived experience approach, participant engagement and storytelling process.
Stories can change how people see FASD
FASD is often misunderstood. Lived experience stories help show the real impact of stigma, delayed diagnosis and gaps in support while also showing people’s strengths, hopes and advocacy.
Every story shared through Red Shoes Rock is shared with permission and care. We invite you to listen, learn and share these stories in ways that respect the people behind them.
Listen, Learn, & Share
Lived experience stories help build understanding when they are shared respectfully.
Frequently asked questions
Stories help people understand FASD beyond facts and statistics. They show why respectful language, diagnosis, support and systems change matter.
Stories should be shared with consent, care and clear boundaries. People decide what they want to share and how they want to be represented.
Yes, where sharing options are provided. Please use the approved links and captions, and avoid editing or reframing someone’s story without permission.
If you are living with FASD, or have lived experience as a family member, carer or support person, you can get in touch with our team here.