Self Advocates with FASD
in Action (SAFA)
Who is SAFA?
SAFA (Self-Advocates with FASD in Action) began in March of 2011 and was the first national self-advocacy group created by and for people with fetal alcohol spectrum disorders (FASDs). Beginning with 10 members, SAFA grew to 21 members and held their latest meeting in Virginia in May of 2012. SAFA’s diverse membership includes self-advocates ages 18 to mid-50’s who come from 19 states and offer a broad range of experiences, ideas, expertise, talent and skill. To learn more, read SAFA’s brochure. SAFA is currently inactive and looking for funding to support the continuation of the SAFA Network nationally.
What is SAFA’s mission?
- Connect people with FASDs together
- Improve quality of life for people with FASDs
- Advocate for needed services
- Educate others about FASD and how to prevent it
Why does SAFA exist?
Although there are other disability-related self-advocacy groups people with FASD could join, having an FASD poses a number of unique and significant challenges that may not be encountered by people without FASDs. Perhaps the most challenging aspect is that FASD continues to be so widely misunderstood, misdiagnosed or not diagnosed and virtually hidden within the disability world, as well as society in general. This fact makes it very difficult, if not impossible, for people with FASD to get a diagnosis and practical supports they need to lead safe and satisfying lives in their homes, in relationships, at school, at work and in their communities. They often go through life feeling frustrated and alone, blaming themselves for problems brought on or made worse by alcohol damage to their brains. Many people don’t even realize they have an FASD until later in life.
What is fetal alcohol spectrum disorder (or FASD)?
FASD (Fetal Alcohol Spectrum Disorder) is an umbrella term describing the range of effects that can happen to someone whose mother drank alcohol while pregnant. The effects can include physical, behavioral, mental and/ or learning disabilities (including intellectual disabilities) and can last a lifetime. There is no cure for FASD, yet it is 100% preventable by women not drinking any alcohol during pregnancy. FASD is often called a “hidden disability” because it is not easily recognizable and often misdiagnosed or not diagnosed at all. To learn more, read The Arc’s fact sheet on FASD.