FASD Day. FASD Week. FASD Month.
The ninth day of the ninth month was chosen to draw attention to Foetal Alcohol Spectrum Disorders and to remind everyone of the importance of avoiding alcohol during the nine months of pregnancy. In some places, this has been extended to FASD Week or FASD Month.
It’s a good idea. Around the world and across social media, there are events happening – big and small. Talks, articles, golf classics, twitter thunderclaps, and acts of personal statement. All this work is colourful, hopeful, well-planned – a sign of a movement coming into its own, moving into the light after having fought many hard battles just to be noticed at all. I am hugely in awe of it all and send out congratulations for this good work near and far. It’s wonderful to have a day to feel part of a growing global effort for social justice and change.
For those who live with it, every day is FASD Awareness Day. The hardest battles are fought not to get an inch in a newspaper or a few minutes of media coverage on one day. Trying to be the news is hard, transformative as it can be.
But harder still is that moment, known to every person with FASD, to every person who has loved and cared for someone with FASD when you find yourself face to face with a person – maybe a medical professional, maybe a teacher, maybe the person at the grocery checkout or the bank, the social service worker or person who determines if you can get financial assistance – some one person who Just. Doesn’t. Get. It. You want to scream. You want to run. You want to lash out at the frustrating injustice, the misunderstandings, the arrogant denials of the reality you face day after day.
But you don’t.
You stand there, and you educate.
You speak your truth.
You arrive early next time with some print outs. You find a way around the roadblocks they may be putting up in front of you. You network with others who have experience. You plan strategies, share information. You google. You self-educate. You believe.
You believe that more can be done. You KNOW more can be done. Your determination, your sense of fairness insists that the situation must change.
Each and every day is FASD Day. That is the real story. Heroes are out there in this world every day fighting the good fight in the face of some pretty daunting barriers.
FASD is lifelong. It doesn’t take a break the other 364 days, the other 51 weeks, the other 11 months.
Every single person affected by FASD has to reach deep every morning to find some reason to believe this day will be good, this moment matters, these struggles mean something. They need to know they can find joy and support and compassion. They need to be seen. They need to be heard. The strength and resilience of this community is astounding. The acts of courage and bravery are awesome.
✸ A child who has been bullied and ignored at school nevertheless walks into the classroom once again, despite the fact the requested accommodations are not in place, despite the fact they are threatened with detention because they did not follow the instructions that were not broken down in a way they could absorb. Despite the fact that for the hour before they left the house there were tears, anxieties. That child faces the new school day with hope that maybe today they will be seen.
✸ An adult who left home while still a teen and who had a rough time for many years tries to do the right thing to set up a stable life and once again walks into an office to try to sort out benefits. They are panicked, trying to figure out how their rent will be paid despite recent cuts that make no sense. Even as they are fighting back the demons they have overcome over the years to get to this clean and more healthy place, they prepare for this meeting and somehow make it there on time, every last nerve raw. Nevertheless, despite many reasons not to trust the system, this person walks through yet another door, hopeful.
✸ A woman picks up the phone yet again. She has tried before to explain, she knows she needs help but she is scared if she asks for it she may bring down the weight of the official system on her family. Despite the fact every time she has raised concerns about her child in the past, her parenting has been questioned and she was made to feel shamed while asking for help, nevertheless she tries once again. Hoping.
✸ A parent smiles at a young adult. They had a rough night, a horrendous week full of some really challenging and explosive scenes, heartbreaking incidents, tiring misunderstandings. Despite the fact that this parent is exhausted, scared for the future, overwhelmed, nevertheless this is a new day and they greet their loved one with hope.
✸ A professional walks into a room full of colleagues who are busy, overworked, and skeptical, people who in the past have openly criticized any efforts to bring more focus on FASD. Knowing it would be easier to simply ignore the need and go with the mainstream, nevertheless this person has come armed to battle for attention in a packed agenda, hopeful that today maybe one key person will hear them and might just free up more time and resources.
There are countless daily acts of courage and bravery in the life of every single person whose world is affected in some way by FASD. Most of all in the lives of those with FASD who face a clueless and uncaring world way too often.
Whether it’s trying yet again to tie a shoe lace or speaking truth to power, people in my town, my county, across England, throughout the UK, Europe and around the world – person by person, day by day we are changing things, stretching language, redefining the field, raising and sustaining hope. These ‘small’ moments are the ones we should celebrate most of all.
My wish for everyone of us out there trying to promote FASD awareness today and every day is this: that we find in ourselves each day some one thing to feel good about.
That we celebrate in ourselves what we want the world to acknowledge. Whatever that is in you, hold it a bit closer today. Grit. Determination. Strength. Courage. Belief. Insight. Humour. Resilience. Faith. Heart. Bravery. Love. Leadership. Fortitude. Persistence. Stubbornness. Vision. Whatever it is in you that you want others to see, today – celebrate that.
Whether or not today is the day for your inch of media coverage (says the woman who was hoping for more), whether or not today is the day you are with others in a crowd standing up for FASD or you are alone at a computer at your wits end seeking answers, help, support – for today, for FASD Awareness Day, chose a few moments of self-awareness. For at least a few moments, look at yourself in the mirror and say, “Well done. I see you. And you are doing a good job. In fact, you are awesome.”
Because the importance of this day is not only in marking society’s trek toward greater FASD Awareness.
It’s also stepping back and appreciating all you have done in your personal life to become FASD aware. That is where the sea change happens, inside our own hearts and minds. That’s where the revolution begins. Has begun. Is happening. Each and every day all around this world. ✸
P.S. Since writing this, another blogger/advocate has written a post she said was inspired in part by this piece. Check out Our Sacred Breath’s latest piece- FASDay: What are you grateful for? and the other amazing resources she has been sharing in the countdown to FASDay.