I am very excited about the information I will be sharing over the next 6 days of the 99 Days to FASDay countdown. Day 21 – 26 will focus on the words we use when talking about FASD, people with FASD and women who use alcohol during pregnancy.
I found these suggestions in a Language Guide on the Manitoba FASD Coalition website under a project called Looking After Each Other.
In May 2014, a diverse group of Manitobans came together to talk about the relationship between stigma and Fetal Alcohol Spectrum Disorder (FASD) and their shared passion to end it. They began to create a vision for a province where people with FASD and women who have used alcohol during pregnancy are fully accepted and their dignity is protected.
In order to achieve its purpose of promoting dignity the project has developed three pillars, each with a corresponding subcommittee. Each subcommittee is pursuing a variety of activities to promote dignity including creating mini-documentaries, applying for research grants and developing a guide that highlights dignity promoting language.
While this group is in the province of Manitoba, in Canada, I think their guide can be used around the world. Some of their suggestions may be controversial due to the deeply ingrained culture of shame and stigma that surrounds alcohol, pregnancy and people with disabilities or challenges. Others may not fit cultures in different countries. But overall, it is good to challenge long-held beliefs.
The group who devised the Guide included parents of children with FASD, women who used alcohol during pregnancy, community members from across Manitoba; including several First Nations communities, government representatives and service providers working with people who have FASD and their families. A great representation that I believe we should honour. Note: In 2018 I contacted the group because it did not say people with FASD were part of the committee, but they were!
So why are the above suggestions made:
Many people who have FASD find these words offensive because they imply that they are not living happy, productive lives. People with disabilities would like others to focus on their strengths and positive attributes. People with FASD don’t perceive themselves in these negative ways and aren’t look- ing for people to feel sorry for them.
The FASD community has removed “living with” to reflect the language used to describe other disabilities/conditions.
The FASD community prefers to use “person first” language. This means that you talk about a person that has a disability (as well as many other traits) rather than presenting the disability as the whole of who they are. Another example would be “a person with an addiction” rather than an “addict”.
These words imply that there has been a perpetrator and is very negative towards mothers. Many people with FASD do not blame their mothers, and they don’t want others to. Birth mothers do not seek to harm their children. This language jeopardizes both women’s willingness to seek help and children’s future relationships with their mothers.
What do you think about these suggestions? I am not sure if or how many I have used in previous blog posts. I likely have used “living with FASD”, some I would never have used, but others are in a grey area.
Even in creating this series for 99 Days to FASDay I found information on websites that while still relevant, the language could be considered offensive or stigmatizing.
So unless someone challenges us to change our language, we use old language. Old language does not serve us and does not move society forward into acceptance.
It is also important to respect preferences for language from individuals with FASD. No one will ever agree completely, but if you use a phrase or word that someone mentions they do not like – even if the Language Guide suggests otherwise, it’s more important to respect that individual in conversations with him or her.
Here is the link: FASD Language Guide
Last year an adult with FASD was interviewed to highlight all she was doing for awareness in her city. The reporter chose to use the word “suffer” many times throughout the article. It was a real shame because the individual did not use that word to describe herself and it set off a debate among other individuals.
You can read about it in this post: FASD Sufferers or FASD Superheroes
CanFASD published a Common Messaging Guide. Details will be shared in a future post.
Check back tomorrow for another Language Guide tip!