Note from CJ to those with FASD: If reading is hard for you, like it is for many of us, get someone you know to read this to you. Or do something like read it in bits and pieces because you don’t have to read it all at once. Do whatever works for you, not for someone else.
So you know a little about me, my name is CJ and I am 35 years old. I was diagnosed with fetal alcohol syndrome when I was a baby. I was in foster care and then adopted by my last foster family when I was five years old, along with my older brother and sister who both also have FASD. I have other biological siblings in other places, some I know who have FAS and some I don’t know anything about. I was the last and 10th child born to my birth mother. She died when I was 10 from alcoholism when she was 43 years old. I also have quite a few adopted siblings, many of whom also have FASD, so I have grown up in a family where FASD is normal all my life.
Five years ago, in 2014, I was asked to do a talk at the International FASD Conference in Vancouver, Canada about shame and stigma and stereotypes. I have been thinking about it ever since and how it affects teens and adults with FASD.
So, today I want to talk directly to all of you out there reading this who know you have FASD or think you do. This is a lot of what I said when I spoke, but I think it should be repeated. Everyone else can read this, but my words are for all you teens and adults with FASD who have felt like somehow you don’t belong, don’t fit in, are not good enough, and are ashamed of having FASD because that is how you have been made to feel.
Only, I am going to talk about how much we are worth.
I hope if you are reading this, it is because you are beginning to figure out that you really are a worthwhile person, no matter what people have said or what you may have thought or felt over the years. To every one of us with FASD – who we think we are, matters. I matter, you matter, we matter.
This is what I have learned:
FASD does NOT define you – it is only ONE piece of who you are, like me having red hair and green eyes. You are NOT a FASD person – you are a person who has FASD. Person first. FASD second. And, I should add, everyone I know with FASD – and I know lots – no matter what “bad” things they have done, is a good person who tries their very best, every day to fit in and do the best they can. The problems we all have are NOT just about us. They are about the rest of the world that doesn’t understand us, doesn’t believe us, and so doesn’t help us the way we need help.
Telling me to try harder or reduce the stress in my life is like telling me to “just breathe” with someone holding a pillow over my face. Do you know that feeling? Sounds great, but impossible to do.
Because I talk “well” and write “well” (my two big skills), and don’t look like the pictures on the internet (except to a doctor), many people around me in the world expect things I cannot always deliver – and some things I just cannot do at all, not ever – not today, not tomorrow, not next week, not next month, not next year – NEVER. Get it?
And I have learned that is OKAY.
I have had to learn that, because there are things I cannot do, it does NOT mean I am dumb or stupid or lazy or making excuses. It just means I am like every other person in the world. Some things I can do, some things I can only do with help, and some things I cannot do.
I bet there is not one single nuclear physicist reading this – and why? Because no one – who does not have FASD – who is reading this is smart enough to be one, even with help. But you don’t see any of them blaming themselves for not being able to work in nuclear physics. So why do we blame ourselves for not being able to do things? We can only do what we can do.
And if you cannot do something – well, that is okay too. I cannot work full time, the best I can do is part time and only some of the time – or my life falls totally apart. So I do the best I can do and if others don’t know it is my best, well, I have finally learned that is their problem, not mine.
Another thing I have learned is that people often act like we choose to make mistakes – but if you are like me, and I am betting you are – then you NEVER “choose” to make a mistake, to screw up, to get overwhelmed, or to lose it. But sometimes life is just so overwhelming that you go crazy. Sound familiar?
You know, when I fail, it is because I cannot keep improving any more, I cannot do what someone wants at this time, I have not a clue what it is they actually want, or I am just so damn tired or frustrated or stressed out that I CAN’T. And guess what – EVERYBODY fails, but for some reason, people with FASD tend to think that we are the only ones screwing up.
Like all of you with FASD, I am good at the things I can do. But the things I still cannot do – well, at the age of 35, it sure is NOT because I don’t want to be able to do them – it is because no matter what, I simply cannot do them. Talk about frustrating!!
Know what? I still cannot tell left from right most of the time and I still cannot tell time on a round watch, and I still cannot budget without help. I absolutely suck at math. And I cannot remember things without HELP – like not at all. I have a horrible time in new social situations, because I don’t know and can’t figure out what the rules are or how to act – is it the same as some other place or different? And when I get overwhelmed or really tired….both of which happen a lot…….well, you can guess what happens!
So, even though I would rather not, I have learned that I have to trust someone to help me with these things or life can be a disaster. And….I have learned that it is OKAY to have help and that I am okay when I have help and I can do more things with help. And believe it or not, the older I get, the less help I need and the better I am at managing.
As one of the Adult Leadership Committee for FASD Change Makers, I speak up because not speaking out when you have FASD means we think it is something shameful – and you and me – we – have NOTHING to be ashamed of. Nothing at all.
People with FASD – It is time we figured this out.
Really, I think the world is afraid of what we might say if we all stopped being ashamed and held our heads high. If I am to have a label, I want it to be MY label and shame is not part of it.
But stereotyping is not just about labels – it is also about how we function and other people’s misunderstandings get in the way. Judging our behaviours; judging what we do; judging what we don’t do; always judging. I bet you all know what that feels like.
Our efforts should be valued based on our efforts – how hard we try every day – and WE – you and I – can be PROUD of those efforts. We have to work many times harder than anyone else to do what others take for granted.
Be PROUD. We are NOT disposable. This is our world, too. We are STRONG; we just don’t know it until we figure it out. We have much to give, much to share, and much to teach.
Because for us, FASD is not just a disability, it is a life experience. And no one understands that experience better than us.
A famous writer named Aldous Huxley said “Facts do not cease to exist because they are ignored.” Think about that. “Facts do not cease to exist because they are ignored”. Who knows the facts better than us? Who better to talk about it than us?
And if we – you and I – don’t stand up and talk about the facts, then who will? And if not now, when will we do it? And there is no way to get away from the fact of FASD – and those of us with it should not feel that it is somehow shameful – it isn’t. Never let anyone make you feel that you that you are not “good enough” – because you are.
We have to change the message and if we do not do it, then who will?
You can see someone with a wheelchair. But because people cannot see what is different in our brains they ignore it as trivial – something that we could change if we just tried harder – and believe me, I try every day of my life and I KNOW you do too. They think they are helping us when they deny or minimize our FASD, but they are not. Really, I think they feel uncomfortable with a situation they feel they cannot “fix”.
But FASD does not make us “hopeless”; it does not make us “tragic”; and it does not make us “victims”. Those are someone else’s labels and I reject them; we should all reject them. FASD just makes us different and there is nothing wrong with that. We should not let their labels or their discomforts define us; make us feel ashamed or cause us to be silent. That just devalues us – and that is what causes the shame we feel because it makes us feel worthless and it makes us doubt our own true self.
When society tries to “fix” us, it just shames and devalues me and every other person with FASD. But really, this shames and devalues all society, not us. It is their shame – not ours.
We have to make things change, and if not now, when will we stand up and speak out? Do not give up!! Stop worrying about all the things you are not; the things you cannot do. Do not let what you cannot do stop you from doing what you can do.
And one thing that you can do is to learn how to speak up, to stand up and be counted; to look people straight in the eye and stop being ashamed – be PROUD of what it is you CAN do; PROUD of what you overcome; PROUD of who you are. Gay people had to come out of the closet; to stop hiding and being ashamed. It is time for us to do that too. You are a person first, a person who has a disability second. Do not believe it when people act like you are damaged or broken.
We are NOT broken and we sure do NOT need fixing; we need understanding, acceptance, help and support for sure, but fixing – NO. So, we have to put one foot in front of the other – change how people see us, how people think about us – we have to do that, us, not anyone else, and if we want to see things change, then we will have to be the Change Makers.
One voice speaks louder than no voice; two voices speak louder than one voice, three voices speak louder than two voices. All of us, together have to speak up and speak out – together as one very LOUD voice – then we can make that “one” voice speak to everyone, everywhere and take back our pride. Together we are strong. Together we are Change Makers.
This is what I know: just because I am smart, does not mean I do not have a disability that needs help and support. And because I have a disability does not mean that I am not smart. This is a fact.
REMEMBER, Aldous Huxley said “Facts do not cease to exist because they are ignored.”
I don’t know about you, but I am a fact, and I will NOT be ignored and I am NOT going away. If we stand together – you and me – WE will not be ignored. Together, we will be heard.
To every one of you with FASD who reads this – I matter; you matter; we matter.
Never forget that.
NOFASD Australia is very grateful to CJ for sharing her wisdom and experience. Read more of CJ’s blogs here.
I’ve heard CJ Lutke talk at conferences in Vancouver and I am always impressed by her words, here and in Vancouver, on the importance of focusing on people’s strengths and abilities. The group of FASD Change Makers in Vancouver is a model for helping others with a similar diagnosis to understand and build their strengths.
I would have everyone have the support they need to be the best they can be no matter what the disability. I do not have FASD but see too many (especially in foster care) who do. They need me and I need them to make me the best person I can be.
Well said! Thank yoh for being a Change Maker!
Thank you so much CJ for so generously giving of your time to write blogs for the NOFASD community. What an exceptional gift you have to be able to express yourself so eloquently! I loved reading this first blog and I know there will be many people who will gain a much deeper understanding of FASD from your personal insight. You are such a wonderful role model for everyone who has FASD!
Thank you for sharing – your message also helps those who are allies to remember some very important things about the person who has FASD.
My 4 year old daughter has just finished her FASD diagnosis & the severity of it is very overwhelming for us & we can only imagine how frustrating that must be for her. Reading this blog gives me hope that she will be a well adjusted teenager & adult, regardless of what struggles she has. We will definitely make sure that she doesn’t see herself as a victim & goes out to achieve the very best she can with no judgement & look up to people like CJ to help her through her tough days.
Thank you for your comments Melinda. We agree, CJ is an inspiration! We are very grateful to her for sharing her wisdom and experience.
Sorry to hear that you are overwhelmed, that is very understandable. Receiving a FASD diagnosis is huge news for any family. It’s great to hear that your daughter has been diagnosed so young as this allows you to put supports in place for her and for yourself as well. If you’d like to talk to someone about your experience or if you have questions about where to go from here please feel free to contact the NOFASD helpline by calling 1800 860 613 or using this contact form.
My 3 year old has just been diagnosed here in NSW Australia.
He matters. You matter. I matter.
I will be his biggest fan and his greatest advocate?
Good read CJ.
All the best x