As all the posts were appearing today, I couldn’t help but reflect on FASD and the continuing stigma and misunderstanding that not only my daughter faces but women caregivers and birth moms.
There were posts that said women deserve to be recognized every day. Yes they do. But I also think having different ways to highlight women provides an opportunity to get important messages out.
One area that really prevents progress in addressing Fetal Alcohol Spectrum Disorder – almost 50 years after it was first named – not only in providing supports to people with FASD, but also awareness and prevention efforts is the stigma directed toward not only individuals with FASD, and caregivers (from other parents and caregivers) but also toward birth moms.
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.
- over half of pregnancies are unplanned.
- women, if they can, stop drinking alcohol once they know they are pregnant.
- women do not intentionally hurt their unborn child.
- doctors are still telling women light drinking is okay.
- some women are dealing with addiction issues.
- some women have a disability themselves.
- other factors, such as little community support, homelessness, poverty, partner violence and other social issues play a role.
- men’s alcohol consumption and support plays a role.
- alcohol companies are not taking a lead or held accountable for the damage alcohol causes.
- companies and governments are making big profits off alcohol sales.
But even with all we know, women are still being blamed, judged and stigmatized. And 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); and
- blame and shame women for having a child with FASD.
- Learn about Fetal Alcohol Spectrum Disorder.
- Research why women drink during pregnancy.
- Advocate for local, national and international awareness campaigns.
- Examine the business of alcohol and question why companies are not held accountable for producing a teratogen or legislated to warn the public.
- Ask your government why they continue to profit from alcohol yet put no, or very little money into FASD awareness, prevention and support programs.
- Question professionals when they refuse to accept the science and refuse to acknowledge FASD.
- And more importantly: ask another woman what you can do to help her. Even if you can’t offer in person support, you can offer verbal support.
On International Women’s Day, 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.
Most recently in response to an FASD Awareness Toolkit produced by CanFASD. In it they state:
I also asked others on my Facebook page what else they felt it was. Because it is not just a women’s issue.
- 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: What is FASD?
So let’s work together as women, to support women. 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 birth moms. Until they can shine their light to help others.