For today’s post — returning after some months away — I’m going to link to CJ Lutke’s excellent blog (hosted by NOFASD Australia), and quote a paragraph from it. She is a member of the Adult Leadership Committee of the intrepid, inspiring fetal alcohol spectrum disorder advocacy organization Changemakers Canada.
Re: the name of the Australian organization, I’ll just mention that there are two closely interrelated constituencies for education efforts pertaining to fetal alcohol spectrum disorder. The first is everybody who doesn’t yet know how serious the consequences of alcohol consumption during pregnancy can be for a growing baby. The goal here is simple: prevention. Hence the phrase “no FASD”.
The second constituency is everybody who teaches, employs, or is responsible for, everybody who plays, studies, works, or otherwise coexists with, the tens of millions of children and adults around the world whose lives have been touched by the brain-based complications of prenatal exposure. The goal here is to promote support, accommodation, understanding, and to reduce social stigma.
CJ Lutke’s blog is aimed at the second constituency. We need a lot more of this sort of educational work to be happening in North America where FASD continues to be hardly known, recognized, or understood even by specialists, never mind the general population.
In order for FASD to be understood, we have to be able to talk freely about it. I applaud CJ Lutke and her associates at Changemakers for their brave trailblazing.
An important paragraph from a recent This Is What I Know post:
“For adults with FASD, FASD is never really spoken of, even in places where it should be. Not in mental health, not in disability circles, not in health or social services; not in all the places we interact with where it matters. Oh, they have heard of it, but nobody really knows what it is, what it looks like or what it actually means. They might be able to list the “symptoms” (distilling us down to a list) but they have never seen a baby, let alone met or got to know a full-grown adult. And they are eager to label a woman bad, to shame her, and scorn her from their places of ethical and moral superiority without ever knowing or understanding the slightest first thing about trauma – our mothers or ours.”
(CJ Lutke, May 27, 2022 blog post, “SHAME, BLAME, SELF-DOUBT TO SELF ACCEPTANCE”)
These sentences resonate for me as the Canadian parent of a child living with a fetal alcohol spectrum disorder. It may be the most common neuro-developmental disorder on the planet, but in this country, in the 2020s, FASD is the brain-based disability that dare not speak its name. The experts who know about its neurological complexities do not step out of the laboratory or the clinic to see the realities of people’s lives. Beyond those cloistered communities of expertise, professionals as much as ordinary people have “heard of it, but nobody really knows what it is, what it looks like or what it actually means.” And, disappointingly, even the most vocal champions of inclusion in other contexts are silenced by the name of FASD, as though it had enveloped them in a debilitating cloud of shame and misplaced judgment.
CJ Lutke’s witty blog tells about the first-hand experience of life with a fetal alcohol disorder, blasts the ignorant stereotypes, and clears the miasma of shame.
https://www.nofasd.org.au/shame-blame-self-doubt-to-self-acceptance/
WALKING THE ROAD 