“Shame should be reserved for the things we choose to do, not the circumstances life puts on us” 

*Ann Patchett*

“Shame is the lie someone told you about yourself”  

*Anais Nin*

“Shame corrodes the very part of us that believes we are capable of change” 

*Brene Brown*

If you trip and fall and skin your knee but are otherwise alright, you have a bad moment.  If you trip and fall and break your arm, you may have a bad day, but not a bad life.

 So why is it that people with FASD seem to have such bad lives?  Because we did not choose the circumstances that caused our FASD…any more than our mothers “chose” to give it to us.   People – society – distils the lives of others into one moment, one phrase, one “choice”.   But people are more complex than that.  We are not just one thing.  To distil any of us down to one thing denies, destroys and deletes our humanity. 

For adults with FASD, FASD is never really spoken of, even in places where it should be.  Not in mental health, not in disability circles, not in health or social services; not in all the places we interact with where it matters.  Oh, they have heard of it, but nobody really knows what it is, what it looks like or what it actually means.  They might be able to list the “symptoms” (distilling us down to a list) but they have never seen a baby, let alone met or got to know a full-grown adult.  And they are eager to label a woman bad, to shame her, and scorn her from their places of ethical and moral superiority without ever knowing or understanding the slightest first thing about trauma – our mothers or ours.

Brene Brown says “our stories are not meant for everyone and hearing them should be a privilege”.  Women who drink during pregnancy and have had children affected by their use of alcohol, don’t always get the choice to decide who has that privilege.  When these women own their own stories, come forward for the sake of their children, they forfeit the right – in the eyes of society – to keep their stories; to continue to be the authors of them.  Because when they tell those stories, it is not often to those who have earned the privilege to hear them.  It is to doctors, teachers, social workers, lawyers; to those in positions to wield the information, often with power they have no office to.  They take a story they did not earn, and judge it.  The circumstances of their stories are taken, copied down, lost in translation and returned as the  narrative of a bad person, a bad woman, and worst of all, a bad mother.  How then can anyone expect her to come forward, or get help, or give the information that can lead to the accurate diagnosis for a child, let alone an adult child, when what awaits her is judgment for a life those who judge did not lead?

As adults with FASD, owning our stories can be just as hard, subject to just as much judgment, but not nearly as difficult as spending our lives running from them.  Embracing our vulnerabilities, our difficulties, our differences, is risky, but not nearly as dangerous as giving up on love and belonging and joy; of a place to be and become who we truly are  – the experiences that makes everyone the most vulnerable.  Finding our place in this world; reaching self forgiveness and self acceptance; healing what hurts so much until you take it out of that “box of shame” and put it on the shelf where you display your prized possessions; the things that reflect what you have accomplished; the things you value the most because you have worked the hardest for them.

So often, we internalize the shame that seems to surround us, to let it centre on our identity as a human being, a person.  We blame ourselves for all the things we have no control over, everything we cannot do, never seeing the strengths we have;  doubting our abilities or never even recognizing that we have them to start with.  But we DO have them.  No matter what others say; what they think; what the larger world believes.  We focus on what is “wrong” with us as individuals, instead of what we can change about things.  So many of us think “I am a mistake”; not “I made a mistake”.  But we are NOT mistakes.  People with many, many difficulties and areas that make life really hard for us, but people who are worthy and strong.   Maybe that is the lesson that shame can teach us if we really think about it.  We need to focus on finding what we are good at, and how we can be good at it. Because believe me, how we are good at it will look – and  be – different than how someone else is good at it.   I will never, not in a million years, no matter how hard I try, be able to do anything at all that has to do with math. And when I say nothing at all, I really do mean nothing.  I test below the 2nd percentile in math (and I don’t even know what that really means except it is not good).  But I do know it means most jobs I could work at are out of my reach because of how abstract math is and how complicated cash registers are (even if I could work full-time which I cannot – and I am NOT lazy).   But….I am good at research; at thinking about things and making sense of them for other people.  And I have a strong skill: I am a good writer and I can write for other people (as long as I have an editor!) and I do all the writing for FASD Changemakers.  I can do that on my own time at my own pace and from my home.

But it took me years to figure this out.  I tried and tried and tried.  Blamed myself for every failure, even though I had people around me telling me differently.  And there  were so many failures.  Always wondering what was wrong with me.  Oh, I knew and understood my diagnosis.  But still, I bought into the societal “just try harder” “you can do it” messages that are everywhere – when of course, the things I cannot do,  I couldn’t do.   Not ever.  So, for a long time I internalized the shame: I told myself the lies, the “not good enough”.  Self doubt ate me alive.   Because my brain is not wired to do many  things the way others do, and nothing, no amount of desire or willpower,  will ever change that. 

So, the way out of that shame was to own it, to stop hiding because of it. To hold my head up; to speak up; to accept myself as I am.  And do you know where I learned that?  From the birth Moms I have gotten to know over the last few years.   I finally understood that only I can do that for myself; because it is my reality and denial will not change all the very many things my brain cannot do.  BUT…. it will also NOT change the things it CAN do.  So that is what I will choose to focus on.

We do not have any control over the circumstances life as placed us in and will continue to do,   but we can have control within our circumstances over the choices we make from this point going forward.  We can choose to look the world straight in the eye and insist on being heard.  We can choose to tell our stories to those we deem worthy to hear them.  We can choose to go forward instead of standing still.  We can choose the direction, even if we do not always understand how hard it might be.  We can own our own stories and choose to continue to be the author of them….because our stories have not ended yet; we have tomorrow and next month and next year and the rest of our lives to write them. We command the room in which they are written.  And we decide, we choose, what that story is and shame has no part in it.

Because FASD is an origin story.  It is not a destination.

CJ Lutke, who is 36 years old, was diagnosed with FASD when she was a baby. CJ is a well-known speaker on FASD, having presented at, and participated in, many conferences, seminars, training sessions and other events for many years, sharing her experiences and what she has learned living with FASD. Read more of CJ’s blogs here.