Join the NOFAS Stamp Out Stigma Campaign!
Join NOFAS and the NOFAS Circle of Hope to stop the stigma of birth mothers of children with FASD and the stigma of all individuals and families living with the disorders.
Preventing FASD and helping individuals living with FASD is challenging! One of the biggest barriers is the stigma associated with FASD and drinking during pregnancy. Join NOFAS and the NOFAS Circle of Hope to stop the stigma of birth mothers of children with FASD and all children, adults, and families touched by Fetal Alcohol Spectrum Disorders.
Watch the Video!
This in-depth statement addresses the stigma of birth mothers, adoptive/foster parents and caregivers, children and adults with FASD.
NOFAS and NOFAS Circle of Hope members are working together to Stamp Out Stigma and we need YOUR help. Here’s what you can do:
- Take the pledge on change.org (CLOSED) to help stop the stigma of birth mothers of children with FASD and of individuals and families living with FASD .
- Post one or more of the NOFAS anti-stigma statements from the pledge on your social media accounts and ask friends to like and share.
- Join NOFAS for the Stamp Out Stigma Twitter Chat and repost the tweets.
- Change your language as you write and talk about FASD. Use the term “prenatal alcohol exposure” rather than “maternal alcohol exposure.”
- Speak up when someone says something that is shaming or insensitive of women, families, or individuals with an FASD.
- Don’t support legislation that seeks to incarcerate or punish women for drinking alcohol while pregnant.
- Support efforts that will increase access to addiction treatment for women and their children.
- Tell your friends about the NOFAS anti-stigma campaign and webpage.
- Urge researchers and clinicians in your circle or discipline to use language that counters the stigma of FASD.
Use Non-stigmatizing Language
Below are 10 widely used FASD prevention messages that have been revised with language that is less stigmatizing and blaming of mothers. NOFAS revised each message and distributed them to 8 university groups that included pediatricians, social workers, ob-gyns, nurses, medical assistants, and family medicine physicians. With their input and suggestions, NOFAS developed the final recommendations that are highlighted below. They have been forwarded for review to the Centers for Disease Control. Once they receive final clearance the revised FASD prevention messages will be used on all future CDC publications, the CDC website, and by all of the CDC grantees.
1. ORIGINAL: Fetal alcohol spectrum disorders (FASD) is an umbrella term describing the range of effects that can occur in an individual whose mother drank alcohol during pregnancy.
NOFAS REVISED: Fetal alcohol spectrum disorders (FASD) is an umbrella term describing the range of effects that can occur in an individual who was exposed to alcohol before birth.
2. ORIGINAL: FASDs are caused by a woman drinking alcohol during pregnancy.
NOFAS REVISED: FASDs can occur in an individual who was exposed to alcohol before birth.
3.ORIGINAL: Drinking alcohol during pregnancy can cause miscarriage, stillbirth, and a range of lifelong physical, behavioral, and intellectual disabilities.
NOFAS REVISED: Prenatal alcohol exposure is associated with an increased risk of miscarriage, stillbirth, prematurity and SIDS, as well as a range of lifelong physical, behavioral, and intellectual disabilities.
4. ORIGINAL: FASDs are completely preventable if a woman does not drink alcohol during pregnancy.
NOFAS REVISED: FASDs are preventable if a developing baby is not exposed to alcohol before birth.
5. ORIGINAL: There is no known safe amount of alcohol use during pregnancy or while trying to get pregnant.
NOFAS REVISED: No amount of alcohol use is known to be safe for a developing baby before birth.
6. ORIGINAL: There is no safe time to drink alcohol during pregnancy.
NOFAS REVISED: Alcohol exposure is unsafe for developing babies at every stage of pregnancy.
7. ORIGINAL: There is no safe type of alcohol to drink during pregnancy.
NOFAS REVISED: Exposure to alcohol from all types of beverages, including beer and wine, is unsafe for developing babies at every stage of pregnancy.
8. ORIGINAL: When a pregnant woman drinks alcohol, so does her baby.
NOFAS REVISED: A developing baby is exposed to the same concentration of alcohol as the mother during pregnancy.
9. ORIGINAL: To prevent FASDs, a woman should not drink alcohol while she is pregnant, or if she might be pregnant.
NOFAS REVISED: Make a plan for a healthy baby –don’t drink any alcohol if you are pregnant or could become pregnant.
10. ORIGINAL: If a woman is drinking alcohol during pregnancy, it is never too late to stop drinking.
NOFAS REVISED: If you become pregnant, stop drinking alcohol. Every day matters. The sooner you stop drinking, the better for your baby. If you need help stopping, talk to your doctor, contact an addiction specialist or contact Alcoholics Anonymous.
Take a selfie of yourself, friends, family members, or others holding a statement from the Stamp Out Stigma campaign and post it on social media or send it to NOFAS. NOFAS is seeking to capture hundreds of people on its Facebook site.
View the anti-stigma selfies!
About the Stigma of FASD
Stigma is a major barrier to the goal of preventing prenatal alcohol exposure and helping individuals living with FASD.
There is a tendency to single out and blame the birth mother of an individual with FASD. Even the name of the condition can suggest intentional harm by the mother. In reality, pregnant women who drink alcohol do not intend to cause harm to their children. Women who drink alcohol when they are pregnant nearly always fall into these three categories:
- They suffer from the disease of alcoholism and can not stop alcohol use on their own
- They are not aware that they are pregnant
- They lack knowledge about the risks of alcohol to their baby.
Birth mothers ought never be discriminated against, viewed with a judgmental attitude, or blamed or shamed. Blaming and shaming birth mothers of children with FASD serves only to stigmatize these women and their families and does not help to prevent FASD. Having the courage to speak out as a birth mother and share one’s story takes courage and DOES help to prevent FASD.
FASD prevention involves all of us doing our part. Physicians need to educate their patients about the risks of alcohol use during pregnancy. Healthcare providers need to screen all women of childbearing age for alcohol use and refer them to appropriate treatment as needed. Establishments that sell alcohol need to inform people about the risks of alcohol use during pregnancy. Spouses and partners of pregnant women should stop drinking to support them. Educators need to teach students about FASD. Everyone including family members, healthcare providers, religious organizations, health departments, and communities should inform women about FASD and the risks of drinking while pregnant. Women and men should protect themselves against pregnancy if they are using alcohol, or stop using alcohol while planning a pregnancy.
Both alcoholism and FASD remain highly stigmatized disorders. Stigma and shame causes a rise in the number of FASD births. Blaming never helps, it always hurts. The stigma of drinking during pregnancy prevents women from talking openly to their healthcare providers, increases relapse and higher levels of alcohol exposure. It also prevents women from asking for help and being honest with their doctors and thier children’s pediatrician. Ultimately the stigma can prevent a correct diagnosis.
Support the NOFAS Circle of Hope
The NOFAS Circle of Hope peer-mentoring program reduces the stigma on birth mothers and helps to prevent FASD. The Circle of Hope was founded in 2004 by NOFAS Vice President Kathy Mitchell. It is a network of women who have consumed alcohol during pregnancy and may have a child or children with Fetal Alcohol Spectrum Disorders (FASD). Join the Circle of Hope today by contacting Kathy Mitchell. View the latest Circle of Hope newsletter.
Videos of Birth Mothers
Watch videos of birth mothers sharing their stories in their own words on the NOFAS YouTube channel.
Hearing from birth mothers reduces or eliminates stigma
NOFAS V.P. Kathy Mitchell received this message from a student at Georgetown University’s School of Nursing & Health Studies:
“I was recently at your lecture for our Health Promotion class where you shared your experience with NOFAS. I just really wanted to thank you for sharing so much of your story with us. It was so refreshing and eye-opening to hear your perspective as a daughter, a mother, a wife, a woman, and a survivor. Following your talk really breathed life into the issue – you are such an empowering person. I also wanted to send you a message to confess that I previously had a prejudice against people whose children suffered from fetal alcohol spectrum disorders. Listening to you made me realize how privileged I was and how much I took knowledge for granted. The amount of care you put into the future generation of health care made me realize the dire necessity in the field for health education and patient-centered care. Once again, thank you so much. I was wondering if you ever had time, I would love to ask you a couple of questions because I’ve come to be really inspired to work for this issue. If possible, I would also like to become involved in NOFAS in particular, and I was also wondering if there were any opportunities available for me to work for the cause.”
Quotes from Birth Mothers
“When I found out I felt horrible and ashamed, but mostly relieved to know what was going on.”
“I was angry because I had been given the wrong information about drinking and being pregnant. So I wanted to tell as many people as I could.”
“You wouldn’t [drink] if you could just feel a little bit of what I feel recognizing [my child has FASD].”
“If you could just live one day in my life. One day having to live with the way I feel knowing my son has been affected by my choices. You wouldn’t drink.”
“I have always been ashamed.”
“The moment my life changed wasn’t the nine treatment centers I went through. It was when I had my last son and they were going to take him away.”
“I always felt like I had to whisper that he was drug-affected.”
“There was a room full of people and that question of did you use drugs or alcohol when you were pregnant was asked. The question was not appropriately asked and it felt very intrusive. I had to say yes but I felt a lot of stigma.”
“Now I feel like I am becoming free from this pain, guilt and shame and it is a healing process. I am healing from something that was very traumatic but I am not alone.”
“This is a painful think to go through and if you have any opportunities to stop your alcohol and drug use it is a gift.”
“The Birth Mothers Network has shown me that I am not alone. I am not the only woman who has done this.”
“We need to help each other with the guilt and shame we have carried around for so many years- we are strong women and we are powerful in numbers. Hopefully that helps erase the stigma.”
“For years I carried around the guilt that the number one thing on my bucket list was to successfully raise a child and when my daughter was diagnosed and got the label of mentally retarded, I told myself I could never cross the number one thing off my list. I could never successfully raise a child because my child wasn’t going to be successful.”
Speaking to her daughter… “If I was ever given the opportunity to do it all again I would have never intentionally done anything like this. And then she turned around and said “I know mom, its OK, I love you.” When she told me it was OK that was all that mattered and it didn’t matter what anyone else thought.”