Submitted by RJ Formanek

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“I can fit in, but I am not the same. Let me be me, and I will make you proud of that decision, because when you allow me to be myself, I can help change the world.”

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“Why Red Shoes?”

That is a question I often get, as originator of the concept of red shoes for FASD.

Why did I choose to wear red shoes, and what do they signify to me?

That is not exactly an easy question to answer in a short time, but please let me attempt to do that here.

The first thing that comes to mind is the style of shoe. It’s a throwback to when I was a child, when we wore canvas running shoes. Years before space age materials and air bladders, there was the canvas runner.  Way back when, they came in two colours, black or white. Red ones were an amazing thing.

So, the style is a throwback to an earlier time, when things were much simpler, a childhood time of new experiences and growth, of hope and of course running faster than I’d ever gone before.  Those shoes were a type of freedom of movement, comfortable and light. They were fast shoes.

The colour red; fire, blood the colour of the heart.

Red is a colour to notice, often used to denote danger, or impart an important message.

Red is flashy. Red is hot. Red is a not a quiet colour; red is full of energy and noise.

These were the thoughts in my mind as I looked and found the ‘perfect’ red shoes, memories of a time of freedom, both of thought and of mind, remembering the hope of childhood.

You see, my red shoes were always a very personal statement, one intended only for me to understand.

To me, they denoted that I was in fact different than my peers, I had known and felt that nearly as long as I can remember… that I was different. That often I would stand out, for various reasons. I knew that.

It’s not something that caused me grief or sadness most of the time. For some unknown reason, I felt a certain ‘strength’ that grew as I became more and more of an outlier in my own social circles.

Standing out is not always a negative thing, and while it can be the loneliest feeling for some people, I was able to find ways to show people that I did in fact think and act differently. I was not ashamed.

It was a natural thing for me to grow my hair long and to dress in ways that spoke of my own freedom of thought and action; that the societal norms did not fit me, nor did I often fit them.

It was always important that I was able to convey a message through how I dressed or looked.

That is the ‘historical perspective’, and how I came to find red shoes as a personal symbol of the type of person I am, and wanted to be.  Not bound by others’ ideas or concepts, but free to learn about life and all it had to offer on my own terms, in my own time, no matter what society in general thought.

At the age of 47, I finally received an FASD diagnosis. It was when I learned about FASD and its effects that I started to really understand why I was often the odd person out, the one who did not fit the narrative of so many others. The outlier, the free thinker, the one who could not be trusted to toe the party line, especially when the party line just did not fit. I knew then why I had to speak up. It’s in my nature, as they say. This is how my brain works. With the diagnosis, I finally understood why it had to be that way, why nothing ever came easy, why keeping friends was a challenge. Why I stood out.

I learned about FASD in general, and then how it affected me in my life. When I was researching it, there was so much information I saw that just did not feel like it represented me or my experience. In fact, I remember seeing a plethora of negative comments, such as “no hope” and “never able to change”. I knew that these types of comments did not represent me, or the people on the spectrum I had met and talked with. There was so much of this old paradigm thinking that I felt I had to speak out and say “it’s not always that way.”

Often people would say  “you don’t look or talk like you have FASD”, and it became apparent that I could use something to denote that I was, in fact, very different, despite how well I was able to camouflage my different abilities by essentially making myself a smaller target. I could fit in.

However, this was a time of great change and growth in myself as a person because I finally knew that I was not a mistake. I was not malformed but, in fact, this was my true self. I had to speak out.  Loudly.

The information being put out about FASD at the time often talked about us, but did not include our voices, our reality.

I needed a way to counter that narrative, a way to ‘open the door’ to a larger conversation. So, having worked in TV for years, I knew the power of a symbol, of how a simple thing can mean so much more than just what meets the eyes.  Just like FASD, there was so much more than just how I looked or acted.

So, that is when I cut my hair and went for a very spikey look. That was very intentional because, despite how well I can ‘act’ in public, under it all is a very reactive and spikey personality. The hair was key to emphasizing that, much like a porcupine shows his splines to ward off danger, I did that with my personality.  Then I chose the power suit, the businessman’s armor, the clothing of the very people who had kept me small in my life. The ones with the power, well they wore the suits, and this was all about taking back my own power, what I was born to grow into.

Those people in suits had made the rules, had put me in my place over and  over. I needed to take on their symbols of power and make them my own.  I put on the suit and I had the hair, but something was missing… I was all symbolic in appearance, but it was just not me.  Not yet.

That is when I remembered the red canvas shoes, the fast shoes that said I was a person of action. Not one to sit and wait, but one to make things happen as best I could. What a better way to co-opt their power symbol and make it my own, by adding those shoes I remembered so well from my childhood.

Red shoes were critical to my narrative, they were the key to it all. They were all about being different. Even with the suits and ties, at the base were those rocking red shoes. They spoke of speed, of freedom of thought and being different, and red running shoes with the power suit sent a message out there to the world: “I can fit in, but I am not the same. Let me be me, and I will make you proud of that decision, because when you allow me to be myself, I can help change the world.”  Lofty goals, but why settle?

So, in the beginning this was a very personal statement about me. My great friend, Jodee Kulp, asked me one day about the red shoes. She was the first person to ask, “Why red shoes?” and I was taken aback. So I told her about my childhood love of the red runners, and what they meant to me as an adult just breaking into the advocacy game, how it gave me the strength to go into crowds and speak my story, without shame or guilt and how that confidence was what made it possible.

Many times in life I had been intimidated, or made to feel small because of the way my brain works. When I felt small, intimidated, or ashamed, I would automatically look down. I would see whatever shoes I had on and I would look at them while taking in the words being thrown at me, often in anger or frustration. I would look down.

But now, when I looked down, I would see those red shoes and I knew I could find the strength, the will, to look up. To look the person square in the eye and, with no fear, say, “No, you are wrong. Here is why.”  Those shoes gave me the power to speak up, even when I was told to sit down and be quiet. 

This was the time to speak, as I was learning that I represented more than just my own past. With the help of others, we could take those red shoes and turn them into a symbol for people with FASD. They do not have to look down and feel shame. They have a part to play, a story to tell.

Red Shoes is all about the power of individuals who, working together, can and have changed the world. It is about taking a once negative narrative and putting our own stamp on it, our seal of approval. People on the spectrum are not lesser, and we have a lot to add to the conversation, not just about FASD but about living life in general. We think differently. When we are understood and supported, we can help in ways yet unthought of, because we have that spark in each one of us. We can light the fires that light the way through the darkness of misunderstanding and help each other to stand, often alone, but still part of a larger group. Red Shoes is about hope, passion, support, and love. Red is the colour of the heart, the colour of love. Red Shoes is about living our best life. Red Shoes is an organization that represents our blood, our fire, and our not typical way of looking at life.

When people ask me about my Red Shoes, I am proud to answer: “Red Shoes is about love.”  What started as my personal representation has been picked up by so many others, and it has reached so many countries with a message of hope, understanding, and support. As we say, “FASD is real, and so am I.”

And it’s true. We are real people and we each have our story to tell.

Hear us, see us, and know us. It’s all about the love.

It is the most humbling, yet powerful, thing to me, to see my personal statement going out in the world, being picked up by others, and to see it grown and morph into a larger conversation of its own. Those red shoes? They certainly changed my world, and I hope they can help others find the same things on their journey with FASD. I really love those red shoes, because as we know Red Shoes do indeed ROCK!

RJ. Formanek is an advocate and educator working to improve supports for people with FASD. For more information, visit www.redshoesrock.com.

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