Written by RJ Formanek
September 9th is International FASD Day, a day recognized since its inception in 1999 by parent educators Bonnie Buxton, Brian Philcox and Teresa Kellerman.
This day is recognized around the world and grows larger each and every year.
Nothing about us, without us
My name is RJ Formanek, and I have FASD. As a person on the spectrum, I look forward to the chance for us all to get together and share experiences and knowledge about FASD, so September 9th is something I personally enjoy being able to participate in. It is so important to have people learn about us.
One vital part of this is hearing from people on the spectrum, sharing their thoughts and experiences so others can learn from them. That is part of the Nothing About Us Without Us protocol that says we have the right to be heard when it comes to our own lives. And so many have been speaking out, telling their own truths, helping so many others understand what for so long had been hidden behind a veil of stigma and misinformation.
FASD is about the people
It is not easy to stand up and speak out. We must celebrate each and every person who can find the strength to do that very thing. You see, when many of us speak of our experiences we are essentially peeling away layers, years of our lives. And I know personally it can often feel like peeling away layers of skin. Yet, every day I see people on the spectrum changing lives and changing the world.
That is important. We are here to remind people that FASD is not about the condition, but it really is about the people who live their lives dealing with the effects of FASD. In a nutshell, FASD is about people.
It’s about people dealing with neurodiversity, 428 known medical comorbidities, and poor outcomes when unsupported. On top of all of that, FASD is still largely misunderstood. We need people to see and to understand that what many call “behaviours” are really symptoms. When we reframe that one simple reference, we start to understand more clearly. FASD is about people.
I did not understand myself, or my life
The kind people at CanFASD have asked me to talk a bit about my own experience, and how I got here today. I was born to a teen mom, but largely raised by my maternal grandparents, until that day I was taken into care full time at the age of 14. Being raised as First Nations and then to be suddenly thrust into the dominant society was quite the culture shock, but (like many things) I learned to deal with living in a situation I did not understand, nor had any control over.
When I was with my grandparents, my symptoms would show. But they were not understood, which lead to misdiagnosis, medications that were often more harmful than helpful, and a lot of blame being placed on me. Not only by others, but also by me…
I wanted to do the right thing but could just never make it work. Being told that I was “bad”, I started to believe it. I thought, I wasn’t good at being good, but I was great at being bad. But deep down inside, I knew that was not the real me. That was the person that others saw. The person who was described to me by people who did not understand me. For years I was first to admit I did not understand myself, or my life.
Through the years I have had a multitude of jobs, starting from a paper route to plumber’s apprentice, road maintenance, sales of all types, taxi driver, photographer, long haul truck driver, telephone assistance and a whole whack of other jobs too long to mention. Was I good at all of them? No, I wouldn’t say that at all. But they were all ways for me to learn new things.
I was able to try my childhood ‘dream job’ and move on to other things. Yes, I’ve been fired a few times but often I left to find new adventures, on my own terms. Yet there was always something about life I could not understand…
My FASD diagnosis
Until I got my FASD diagnosis at the ripe old age of 47. By learning how FASD can affect people, I was able to see exactly how it was affecting me. I was learning to understand and that was a huge gamechanger for me.
Now I understood it wasn’t about me, rather it was about my circumstances and abilities. Learning about brain function has helped to understand why some things were harder for me than others, yet some things would come naturally to me that others struggled to grasp. I learned I didn’t do things to be “bad”. My brain reacted to things I did not understand in a way that would often confuse and confound not only the people around me, but myself as well. You could say it all started to become clear and started making sense.
Life goes in cycles
I often say that one of the attributes I am most happy with is one that has often caused me great physical pain in the past, namely that I ‘don’t know when to stay down’. This would first surface in games and physical confrontations as a child. No matter how badly I was getting beat down I would get back up again.
To be honest I hated that about myself, how much easier it would be to just lay down and let the storm roll over me. But I couldn’t, and to this day I can’t. Not now, not ever.
So, what’s that all about? I understand that life is cyclical, it goes in cycles. This was a lesson I learned very early in life. Seasons come and go, but they always return. The sun comes and goes and comes again. In short, what goes up must come down.
Translated that can mean that if one day I can’t do a thing, on any other given day I might just be able to actually do it. It’s good to know that if you’re on the downside, one day again you’ll be on the sunny side of life. The good days. The ones you never want to end. Those precious moments in time when it all comes together.
That might be my strength, yet for years I considered it to be a weakness, but through it all I was also determined to work for the good days, and deal with the bad days as they came along. That’s what gets me through the long days and nights.
Red Shoes Rock
It was on one of those good days I was honoured to meet a lady by the name of Jodee Kulp, who is a parent and educator. She took a few moments to chat with me. That one simple conversation has really started a movement. It all began with a simple question about my red shoes.
You see, despite years of hiding in the shadows I have a wee bit of a show off side to my personality. The thing I would do “to be different” (as they said) was to wear a pair of red running shoes with dress up outfits, like a blazer or a suit. It’s an interesting look… and people notice. It shouts out “I choose to think differently!”
I am different… an individual with my own thoughts and dreams and feelings. I am passionate and feel with my heart. All of this is represented by those red shoes.
It’s not about the condition, it’s about the people
Fast forward a few years and much very hard work by Jodee and her crew, Red Shoes Rocks has been a place for people with FASD to show their abilities with pride. From a simple conversation about a fashion choice this has grown into a movement that is by and about us, the no longer invisible people on the FASD spectrum.
This movement has grown world-wide and into multiple languages because our message is clear… it’s not about the condition, it’s about people. The spirit that drives not only us, but the caregivers and people who work with us to strive towards the goal of person oriented, ethical supports designed for the lifespan. This is a goal we can achieve, and we are getting there. We are changing the world.
The medium is the message
In 1964 world renowned Canadian philosopher named Marshall McLuhan coined a line of thought that, while being about media in general, can also be said to apply to people with FASD and what it means in our day to day lives.
The medium is the message.
We are the medium that conveys the message. We who have FASD. By living our lives, and being our true selves are sending a loud and clear message to all who are within hearing. We are people who, despite dealing with challenges thrust upon us, we endure, we carry on. We are not going away, but we are going to thrive, because we don’t give up. We are not weak, and we can use our considerable strengths and talents to help us all make this a better world. Together we are making that change happen. Here and now.
Let’s all get out there and don our red shoes, make some noise and turn Canada red from coast to coast. Let’s show the strength and determination of a group of people I, for one, am proud to be among. All the best for your 2022 FASD Day celebrations!