As all the posts appear each year, I reflect on FASD and the continuing stigma and misunderstanding that not only my daughter faces but women as individuals with FASD, caregivers and biological or maternal moms.

There are posts that say women deserve to be recognized every day. Yes they do. But I think having different ways to highlight women provides an opportunity to get important messages out in unique ways.

Progress is slow for women and individuals with Fetal Alcohol Spectrum Disorder. Fifty years after the term Fetal Alcohol Syndrome was first coined there are minimal supports for women, individuals with FASD and caregivers. Awareness and prevention are minimal, despite 3-5% of the general population with FASD. Why? Alcohol is an accepted drug. Profits are made but little is directed back to the FASD community. Stigma, shame and blame are directed toward individuals with FASD, caregivers and women – as if it’s solely a woman’s issue.

In a January 2020 article, CanFASD stated:

In our field, we know only too well the impact that stigma can have on the health of Canadians. Individuals with Fetal Alcohol Spectrum Disorder (FASD) and their caregivers experience stigma on a daily basis. Despite the fact that FASD affects approximately 4% of Canadians (more than cerebral palsy, autism, and Down syndrome combined), the disorder is not well understood by the majority of our population. As a result, the challenges individuals with FASD face with emotional regulation and social interaction are often seen as “bad behaviour” and “poor life choices” by our society. This stigma impacts every aspect of their lives, from employment and education to involvement with the justice system and everything in between. Additionally, mental health issues and substance use disorders frequently co-occur with FASD. As a result, individuals with FASD face stigma in a number of different forms.

The stigma surrounding substance use, particularly surrounding substance use and pregnancy, is also a major barrier to FASD prevention efforts and FASD diagnosis. Pregnant women using substances often experience feelings of shame and depression that can impact their mental health and relationships with their families. Fear of judgement from service providers prevents women from accessing the necessary pregnancy and treatment supports they need.

Disclosing substance use during pregnancy can be an important factor in receiving an  FASD diagnosis for a child. However, the stigma surrounding substance use during pregnancy, and the judgement and discrimination that women experience from service providers often inhibits this disclosure.

I understand grief and loss. I understand people are on different paths and points in their journey. I understand that people are not as aware of FASD and the statistics as those in the FASD world. But no matter any of that, people can choose to be kind. Be free of judgement. Choose compassion over scorn. Curiosity over judgement.

We know:

• FASD is not just a women’s issue. other factors, such as little community support, homelessness, poverty, partner violence and other social issues play a role.
• doctors still tell women light drinking is okay.
• over half of pregnancies are unplanned. Not all women have access to birth control. 
• men’s alcohol consumption and support play a role.
• women, if they can, stop drinking alcohol once they know they are pregnant.
• some women have a substance abuse disorder and have no support.
• some women have a disability themselves.
• alcohol is a teratogen, yet alcohol producers are not held accountable.
• there is no incentive to warn consumers when companies and governments are making big profits off alcohol sales.

Despite the above, women are still blamed, judged and stigmatized. It needs to stop.

If you have posted today that we need to lift, support and celebrate women, make sure you do not:

• judge other moms parenting styles;
• judge a woman’s choices (because we don’t know her story);
• blame and shame women for having a child with FASD; or
• discriminate or use FASD as a punchline for jokes.

Instead

• Find answers. Ask alcohol producers and government officials why alcohol, a known teratogen, is sold without significant legislated warnings of health risks, including prenatal alcohol exposure and fetal alcohol spectrum disorder. 
• Advocate. Ask for changes to legislation, policies and programs in order to support women, people with FASD and caregivers. 
• Stop Stigma, Shame and Blame. Learn about PAE and FASD and how to support healthy communities and pregnancies.
• Do something. Speak up. Be an ally. Go alcohol free. Volunteer with an FASD or women’s group. Raise awareness. Wear red shoes.

On International Women’s Day in 2020, CanFASD wrote:

…it is important to have open and honest conversations about health equity, including the opportunity for everyone to make informed decisions about their health.

For CanFASD, health equity means that women have the right to know the impact that substance use during pregnancy can have on their health and the health of their child; it means that women have the right to supports and services that can help to reduce or eliminate their substance use during pregnancy; and it means that women can access affordable contraception and are empowered by up-to-date information on their sexual and reproductive health. Collectively, our actions can make a difference.

Each of us can challenge stereotypes and stigma, fight bias, broaden our perspectives and understanding of women’s lives and the role of substances in their lives, and celebrate the achievements of women and girls who are working to eliminate or reduce their substance use during pregnancy. Learn more about health, substance use, and fetal alcohol spectrum disorder on our website at www.canfasd.ca.

So as women we owe it to ourselves and to each other to help each other. It can be as much about what you do say, as what you do not say. Because every one of us has a role to play.

Even in the the time I have had this blog, I have written several times about stigma.

One year CanFASD had an Awareness theme of FASD is. It is an eye-opener.

It states: FASD is:

I asked followers on my Facebook page (@allaboutfasd) what else they felt FASD was. Because it is not just a women’s issue. They said:

• FASD is a child and adult issue.
• FASD is a child’s health issue.
• FASD is a community issue.
• FASD is an economic issue.
• FASD is an education issue.
• FASD is everyone’s issue.
• FASD is a family issue.
• FASD is a hidden issue.
• FASD is a human rights issue.
• FASD is a lifelong issue.
• FASD is a men’s issue.
• FASD is a premature death issue.
• FASD is a social issue.
• FASD is a social justice issue.
• FASD is a substance abuse issue.
• FASD is a trauma issue.
• FASD is a whole family issue.

You can read more here: 

FASD is not a punchline

What is FASD?

FASD: Stop the Stigma

FASD Prevention: Why are we still struggling?

FASD: It’s time to Stop the Debate.

Days 23-25: Talking About Alcohol Use and Stamping Out Stigma

Day 3: Kilometre 3: (Stamp Out Stigma) 9 kms in 9 days for Red Shoes Rock. Stop FASD.

2023 Update

The 2023 International Women’s Day campaign theme is Embrace Equity. It compliments the advocacy we undertake. The IWD committee states:

Equity isn’t just a nice-to-have, it’s a must-have. A focus on gender equity needs to be part of every society’s DNA. And it’s critical to understand the difference between equity and equality. The aim of the IWD 2023 #EmbraceEquity campaign theme is to get the world talking about Why equal opportunities aren’t enough. People start from different places, so true inclusion and belonging require equitable action.

So let’s work together to support women and embrace equity. To challenge gender stereotypes, discrimination & bias. Unless you’ve been taught how to do this or been supported in your own life, I understand how hard it can be to do. But for those that can, we can hold space for the others. We can stand in horseshoes. And we can give our light to women with FASD, caregivers, and maternal moms. Until they can shine their light to help others.