An interesting discussion came about a couple weeks ago on the language and word choices used to describe people with Fetal Alcohol Spectrum Disorder as well as the experience of having FASD.
I asked Maggie if I could share her post which puts the debate into perspective.
For me personally before I came to accept that I had FASD, and accept the fact that it wasn’t going anywhere, I felt like yes I was a “FASD sufferer”, because I had to suffer everyday.
That I wasn’t ever going to be liked by the people around me and that sucked and somedays it still sucks. But then I started to believe that just because people on the FASD spectrum see things differently doesn’t mean we are FASD sufferers.
And that actually I wasn’t suffering because trying to be like everyone around me was boring and a waste of energy.
My FASD makes me unique. I see things in ways that other people don’t. I get the chance to overcome mountains and become stronger because of that climb that the people around me never even get a chance to try.
So I very slowly began to change my thinking from being a FASD Sufferer to seeing myself as a FASD Superhero.
Yes having FASD means we will struggle with different things, but in the end we all learn how to overcome or to find supports to help us.
FASD sufferers to me sounds like everyday is horrible and that you never are happy and you’re not enjoying your life because of the FASD. For some people on the spectrum that may be true, but for many other people on the spectrum they are enjoying life and living it to the fullest. Or at least that’s my own experience and also other people’s experiences from what they have told me.
Yes sometimes they have bad days, but for the most part they are happy and they don’t see their disability as something they suffer with – it’s something they learn to live with and find ways to make it easier.
Maggie is an incredible advocate from Ireland. You can follow her on Twitter @Maggiem56977041.
So what prompted this discussion?
It was an interview of young woman, Lauren, who recently worked very hard to get Fetal Alcohol Spectrum Disorder recognized in her town. She was able to get a banner on buses sharing the message of no alcohol. Fantastic advocacy and awareness!
The local newspaper interviewed her and unfortunately the journalist chose to say people with FASD suffer. They are FASD sufferers. In fact the word suffer appears half a dozen times in the article. But not once in any of the quotes. Poor Lauren had to go on posts to tell people she never referred to people with FASD as suffering.
If you’d like to read the article and learn more about this amazing advocate, check out Red Shoes Rock Raise Awareness of Fetal Alcohol Spectrum Disorder .
This is just one of the many stigmas people hold, and it is perpetuated by journalists who do not do their research. The success Lauren has had shows she is not suffering… so it is confusing to me why the journalist chose to repeatedly use that phrase.
Part of the 99 Days to FASDay looked at language.
This information came from The Language Guide. You can find out more here: Day 21 of 99 Days to FASDay: FASD Language Guide.
During the last 99 Days, CanFASD also promoted a guide to talking about FASD. You can read more here: FASD: Common Messaging
These are only guides. They were developed with input from people with FASD. But not everyone agrees. Because everyone is an individual.
But as language evolves and we learn more, my suggestion is to use the ones that resonate with you. That are meaningful for you. But apply the test of:
if this was you, would you like people referring you to you in this way?
Always choose kindness, compassion and respect.
Our Sacred Breath has highlighted language and messages throughout the entire series. Most recently with Day 86 of 99 Days to FASDay: FASD Messages however as we head into the last week leading up to September 9, 2019, International Fetal Alcohol Spectrum Disorder Awareness Day (FASDay) we will share words from people with FASD.
If you’d like to review the posts in this series, you can find them all here 99 Days to 9/9 FASDay: Master Post.
I love that people with FASD are getting in on the conversations. Their perspective is vital and we cannot advance understanding without their perspective! Stay tuned as we highlight some of those voices over the next week!