Facing the collective resistance to change
Today, despite everything we know — despite decades of accumulated, well‑documented scientific knowledge about FASD — our social and collective behaviors still fail to evolve.
And the question is: why?
Why do we, collectively, as societies, continue to look away?
How is it that we manage not to retain the information, not to see the long‑term nature of the damage caused by prenatal alcohol exposure? – Depriving concerned people of the therapeutic support they need and deserve?
How does this resistance become so strong that it leads us collectively to deny their disabilities, to treat them as fully responsible for their actions and choices, and to make them disappear socially — hurting them even more in the process?
It is striking that after sixty years of accumulating scientific evidence, the French National Strategy for Neurodevelopmental Disorders, 2023–2027, does not contain a single line about FASD.
Is FASD not a neurodevelopmental disorder?
Are concerned people not as worthy as anyone else of valuing their neurodiversity ?
Yesterday, at the Family Day event, we had the immense privilege of hearing testimonies from concerned teenagers and adults — some of them are even parents of healthy children who are very well.
And yes, they spoke about stigma. They spoke about discrimination.
Discrimination they have endured since childhood.
They told us how the absence of diagnosis amplifies this discrimination, and how stigma grows in the silence left by our institutions.
As everyone, they try to reach adulthood and build a social life.
But beyond their resilience — because however imperfect, a social life is already an achievement — what struck me most was their talent. Their many talents. Talents that are valuable to our societies, and that can be nurtured.
People with FASD have strengths.
They have abilities.
They have potential If we support them.
And they want to develop it – as anyone
But that, begins with recognizing them fully as individuals with neurodevelopmental disorders caused by prenatal alcohol exposure.
The persistent denial that our societies oppose to them is brutal.
Brutal because it leads to stigma through the lens of their behaviors – behaviors that schools, social services, justice system interpret as intentional, and we know it’s not.
And this denial destroys self‑image.
It hinders personal development.
It isolates.
We all know that : When a concerned person grows older, complications and secondary disorders arise.
But this arises not only from the initial brain injury, but from the way our communities fail to recognize, support, and welcome them.
These human people did not ask for anything. And in far too many cases, their mothers — as women first, and even more as pregnant women — were left alone with their suffering.
Alcohol, socially, is a symbol of sharing, of conviviality. Most people do not feel concerned by its negative consequences.
They attribute them to others. They underestimate them when they do not deny them.
FASD is therefore perceived as a childhood condition – which makes concerned adults even more invisible.
The cause of FASD seemed singular, isolated, confidential and ignored
But now we understand that FASD is a part of a growing number of social issues that urge us to change, collectively.
If alcohol is the leading cause of non‑genetic neurodevelopmental disorders, then it is a toxic cause. A dietary cause. An environmental cause.
Hearing that, we are less alone – because more and more evidence links other neurodevelopmental disorders to environmental and dietary factors.
Another urgent call for change is violence against women and children.
When societies decide to address these issues, they discover their immense scale – and then they encounter enormous collective inertia.
It is not so surprising to encounter this other issue that brings us back to FASD.
How many women living with addiction experience violence?
How many women in shelters for victims of domestic violence are also living with addiction?
According to a Spanish study : one in two.
Today, we must acknowledge that the absence of diagnosis increases discrimination, increases social pressure, increases burnout, destroys self‑image and blocks any access to care.
And most of all, denial keeps the damage alive over time.
Across all the issues in which our societies trap themselves in denial – climate, colonial histories, social inequalities, concentration of wealth – We see destructive power of denial.
In the field of FASD, my conviction is clear :
If our societies decide to heal the wounds they have collectively inflicted – if we decide to include FASD among priority neurodevelopmental disorders – if WE, as a human society, sincerely heal these wounds, our wounds – then prevention will leap forward for good.
And maybe, by healing these wounds, societies will also move forward on violence against women and children, on social inequalities, on climate inequalities.
What I know, as a lawyer, is that most of our legal systems commit governments to protecting public health.
We have seen lawsuits against governments for climate inaction.
These procedural frameworks have been used before – for causes less spectacular, but equally revealing our collective inability to build a better future.
These same frameworks can be mobilized for FASD.
And they already were, twenty years ago in France.
They led to warning labels on alcoholic beverages.
And it is less known, but they led also to mandatory training for health and social‑care professionals.
Yes in 2004, training about FASD diagnosis and therapy was a legal obligation in France
But five years later – inexplicably – this legal obligation was repealed.
And since then, the knowledge needed to support concerned people has remained confidential.
Such inaction, in the face of immense scale and enormous scientific and educational knowledge, is a breach of our social contract.
And it provides legal basis for legal action — just as in climate litigation.
Definitely, FASD is a matter of social struggle that lead our human societies to evolve.
And as in many social struggles, the concerned persons, especially as we saw them yesterday, through their living demonstration that they can build a social life as normal as possible —
These people, they are the heroes of tomorrow.
You can meet many of them here in the conference and I know it would be a pleasure for them to meet all of you an answer your questions.