Day 4 on my Red Shoes Rock journey to bring awareness about Fetal Alcohol Spectrum Disorder, leading up to International FASD Awareness Day is about what is hidden.
I was prompted to think about hidden after discovering the painted piano pictured above. Every time I passed it for about a month, it was covered up with a plain white cloth. I couldn’t tell what was beneath. One day, the cover was removed – and I was surprised at what had been hidden. A regular piano transformed with painted poppies. It was commissioned to celebrate Canada’s 150th Birthday.
There are many things about Fetal Alcohol Spectrum Disorder which are hidden.
The disability itself is considered an invisible disability. Because for the most part, the only way to “see” FASD is to see the symptoms which are viewed as “behaviour” problems. When really what you are “seeing” is the result of a lack of understanding and accommodations and not meeting a person where they are. There are a small percentage of people who will have physical or facial features, but most do not. You can “see” this disability once you accept behaviour as symptoms or unmet needs.
The disability remains hidden to many professionals who still do not know about FASD or are not well-informed about it. One study in the USA revealed at least half of doctors did not feel confident in diagnosing FASD. There are professionals and people who still think drinking alcohol during pregnancy is okay. It is not. While there is no known safe amount, alcohol does have an effect, so it is best to abstain. See Day 5 of 99 Days to FASDay for a discussion on no known safe amount.
There is emerging evidence on a father’s role in FASD. One study discovered 75% of children with FASD had biological fathers who were heavy users of alcohol. There is also emerging research on the role of alcohol in sperm abnormalities and genetic and epigenetic influences from paternal consumption of alcohol. See Day 9 of 99 Days to FASDay for more information.
The disability remains hidden from the individuals who may have it. Some may not know they have FASD because they don’t know if their birth mom used alcohol or she did not confirm alcohol use. Many do not see the disability present itself until a child reaches early or middle school. See Day 10 of 99 Days to FASDay which talks about how FASD remains hidden.
It remains hidden because women do not talk about alcohol use. Stigma, shame and blame remain. Who can blame women for not talking because many still place the blame solely on women. See Day 23 of 99 Days to FASDay and Day 26 of 99 Days to FASDay which challenges the way we speak about women and alcohol use. We know it is much more complex. See What is FASD? for some thoughts.
The hidden piano was also symbolic of hidden or undiscovered strengths or talents. The sound of a piano may be muffled under a cover, or not produce a “typical” sound the way we are used to hearing it, but it can still produce a sound. Individuals can still function with a disability. It is a different ability. It is a way unique to them.
Today is FASD Awareness Day discusses the hidden disability and strengths of individuals. The talents of people with FASD can be hidden. People tend to focus on the negative and not the positive. I get the challenges – believe me – I’ve lived them. However it is important to focus on what a person can do, and help that person develop that talent or interest. Self esteem is so important. Too many develop secondary challenges or face adverse outcomes because they are misunderstood or their needs are not being met or accommodated. Check out Day 27 of 99 Days to FASDay for information on the importance of focusing on the positive.
We need to uncover and play to their needs and strengths. Not our expectations
Just because you cannot see something does not mean it is not there. And what you see is not always what you think.
It’s time to bring FASD to the forefront. Not only in helping communities understand alcohol use and addictions, but in educating everyone about the risks of using alcohol when planning or during a pregnancy and why providing supports and services is so important to those who have FASD and their caregivers.
And that’s what the Red Shoes Rock Campaign is all about. It’s making the invisible visible. It’s using red shoes to stand out. Red shoes draw attention in a fun and respectful way to an important subject. It’s time for people to take notice. It’s time for people to take action.
There are still five more days to get involved before FASD Awareness Day!