23/04/2018 17:12 BST | Updated 23/04/2018 17:12 BST

Barbara Bush Deserves A Better Eulogy - Alcohol In Pregnancy Is No Laughing Matter

A joke about her son George W. Bush showed it's still sadly okay to laugh at people with learning disabilities

Kevin Lamarque / Reuters

I tuned into the funeral of former First Lady Barbara Bush out of respect for a strong woman. Not thirty seconds into my viewing, historian Jon Meacham repeated the quip that has been going around since she died, “You want to know why George W. is the way he is… Because I drank and smoked while I was pregnant with him.” The room full of former presidents and other leaders erupted into laughter. I froze. Then I turned off my television. My heart was racing.

Thousands of miles away from my home country, I hoped my child with Foetal Alcohol Spectrum Disorder did not hear. I have to keep him away from presidential news these days with all the talk of porn stars, crude language and other shenanigans for which the current White House occupant is known.

I never dreamed I would have to be similarly on guard during the funeral of a classy former First Lady – a woman we loved for her chocolate chip cookie recipes, for heaven’s sake. Those days seem so far from the current tackiness that now consumes 1600 Pennsylvania Avenue. And yet, I should have known.

Barbara Bush was born in an era when people were still considering eugenics for those with learning disabilities (if you doubt the seriousness of this, look up the origins of the word ‘moron’). And here we still are. During an internationally televised formal event bidding farewell to a woman who served as a role model for millions, it’s still sadly okay to joke about drinking during pregnancy, to mock those with intellectual disabilities, and to perpetuate stigma.

Shame on them all. It’s not okay to lighten your own heartache at the expense of others.

Damage to a developing brain by exposure to alcohol in the womb is devastating and lifelong.

I sat there, worrying about the impact that careless and crude laughter of all those dignitaries might have had on adults with FASD who might have been watching. I thought of the disbelief of their families, loved ones, and the professionals who try hard to get them services in a world that still thinks it’s ok to joke about it.

I worried about the future for our 13-year-old. He struggles hard every day of his life to cope with compromised brain wiring. He becomes overwhelmed by sensory input that most of us take for granted. He uses all his focus to try to get by in a world designed for neurotypical brains. Some days he gives so much energy just to keep it together at his specialist school that he comes home and has a meltdown. He tries so very hard, does he deserve to see a room full of people he is supposed to look up to laughing about his condition? Of course not. How could I ever explain it to him? Why should I have to?

FASD is a spectrum – people have a range of IQs and other abilities. Our son is an excellent singer, dancer and gymnast. Some with FASD have quite high IQs. With diagnosis and support people with FASD can do amazing things. But nearly all with FASD have trouble with executive functioning – linking cause and effect, thinking abstractly, controlling impulses. They need external support to help organise themselves in a complicated world. They are prone to addictions and secondary mental health issues.

But actually, it’s not inconceivable that someone exposed to alcohol in utero might become president. It would be fascinating – perhaps even transformative - if former President George W. Bush were to seriously explore whether or not there is truth to his mother’s seemingly off-hand remark. Imagine the power a high-visibility person like a former president could bring to the cause, whether or not he might prove to have FASD. Not everyone whose mother drank during pregnancy will have FASD. Scientists do not yet know how to determine which women who drink during pregnancy will give birth to a child with the condition. What we do believe is that FASD is more prevalent than autism, though it is far less understood and often misdiagnosed. The advice from the world’s leading experts is to avoid alcohol if you are pregnant or trying to get pregnant. Those of us in the FASD community insist on dignity for those with a diagnosis and those seeking answers to unexplained behaviours and difficulties at home and school. We demand our leaders show compassion and care for those vulnerable people in our society who walk this world with Foetal Alcohol Spectrum Disorders.

We call for a clarifying statement from the Bush family to show they understand that this is a serious issue and no laughing matter. If they don’t, they are being just as insensitive as President Trump mocking a disabled reporter. Pearls don’t give someone a free pass when it comes to perpetuating prejudice.