2018 / 2019 Update: Continuing with focussing on the positive, there is another theme important for people with Fetal Alcohol Spectrum Disorder: That people with FASD are change makers and according to Myles Himmelreich who coined the phrase, there should be “nothing about us without us.”
Nothing About Us Without Us was the theme for the 8th International Research Conference (2018) on Adolescents and Adults with FASD. RJ Formanek, who first began wearing red shoes, that sparked a conversation with Jodee Kulp, that turned into the Red Shoes Rock movement, was one of the key-note presenters.
I had the privilege of meeting RJ in June 2018. We had tried to connect when I passed through Thunder Bay on my Red Shoes Rock across Canada Trek in 2016, but the timing didn’t work. So I was so excited to have the opportunity this year. (Still hope to meet Jodee someday soon!).
Last year, on Day 28, I profiled It’s Mackie’s World (original post follows this one), however with the conference this year, I wanted to add another positivity post. RJ has been making a difference with his speaking engagements and training. He also created an online support group on Facebook with over 4,000 members, called FASD: Flying With Broken Wings (link is on FASD Around the Web page). It’s an amazing gathering place for people on the spectrum to share success, find support and educate the people who support them.
With his permission, I share his keynote address:
Hello, my name is RJ Formanek, I live with (and embrace) FASD. I AM a change maker. Those are not easy words to live up to, but that can be the beauty of the challenge.
Since I did not receive my own FASD diagnosis until I was in my late 40s, I was unaware of the ways my own brain conspired against me, how it made my life a whole lot harder. I was unsure of myself, repeatedly diagnosed with a variety of mental health concerns based largely on my behaviour, yet unable to understand why.
It’s not easy being the “OWNER / OPERATOR” of NEURODIVERSE brains like the ones we have been given, Few people actually are able to fully understand how brain function can easily “LOOK” like one thing, yet be something totally different… but the pool of knowledge has not filled yet to that point. We are often judged by behaviours, not by the reality that our brains work in a different way.
For example, I am a thinker before action when possible, and to others that can look like I am lazy, or non cooperative, or just not a team player, or worse yet…that I am not smart enough.
What is on the outside does not reflect the depth or breadth of my thought patterns and the many MANY ways I look at a question before coming up with an answer. This can be a challenge when dealing with people who do not know that my brain works in a different way to my NEUROTYPICAL peers.
What is PROCRASTINATION to some, is PROCESSING to others.
Seeing and knowing the difference can be key to a successful outcome.
This is where we, the people with FASD can help.
I am reminded of a story where while they were researching possible causes for cancer some interesting things came up in the data. There was a correlation between smoking and lung cancer, and lung cancer also appeared to show up related to an unexpected product. Chewing gum.
Raw data, while being broken down had shown to figure highly in the number of lung cancer cases. Researchers were baffled. While the data on cigarette smoking showed great promise with a wealth of information, the chewing gum link COULD potentially be ground breaking.
Thankfully, they decided to pursue the smoking angle, because what did they find out while looking at smoker’s habits? They found that a HIGH PERCENTAGE of smokers used chewing gum to cover the bad breath associated with the smoke.
It was only by understanding how people smoked they were able to interpret and understand the data they were looking at.
What was needed was the ‘end user” application of theory… one is good, but together the theory and end user application can move the conversation forward in huge ways.
Often people on the spectrum have been largely misunderstood, and stigmas do abound, but I am here to implore each of you to look for the individual strengths we can share.
FASD IS DEVELOPMENTAL…this is something we live with every day of our lives, and we DO learn and we DO grow. The unknown potential of each individual may be different, and what defines “success” for one may not be the same as for another, but brains are very plastic, and we all deserve the right to be the best we can each be.
I have seen almost daily examples of people, of adults, on the spectrum who are creating new success in their own lives, because how we use our big, beautiful brains IS important.
But we must also temper our expectations, as one adult has said “Expectations are premeditated resentments.” Each one of us is very unique, and different.
Therein lies the challenge for some, but for many it is our strength..
Being labeled as different teaches one to look at things in a different way.
New, innovative ways of interacting with and using the world around us.
“Each person is a teacher” my ancestors said, and it is true: Different does not have to mean lesser.
What I, and my contemporaries are asking is that we be included, at some point in research… perhaps as an oversight panel where our experience of living with these brains can be put to productive use in helping us all move forward. We can often interpret and understand why some people might react one way and not another, even with our wide differences our brain function is often pretty basic… to us. The synaptic connections we have made in our own brains often DO dictate how our brains work, from minute to minute, day to day.
We can be trail guides in an area that is not yet fully understood.
We can help you help us.
That is our challenge. To change the world of FASD for those who follow our footsteps.
They call me RJ… and I AM a change maker.
If you would like to read, see or hear more about the Conference, visit Change Makers & Presentations from Individuals with FASD .
Original Day 28 for 2017
In the words of the creator, Ann Yurcek:
Mackie’s World is a cartoon, so I looked at the definition of what a cartoon is.
Cartoons teach and bring smiles; we mean to use it as a drawing symbolizing the actions and understanding of a little person with multiple medical, relational and learning differences in understanding to impart knowledge to the general public so they can be more sensitive to those with extraordinary abilities.
Our goal is to be sensitive, reflective and heartwarming.
Our mission is to broaden the understanding of those with additional needs.
You can follow the adventures of Mackie at: It’s Mackie’s World
Check back tomorrow for Day 29!