THE LANGUAGE OF DIAGNOSIS: The Unintended Messages in the Language We Use

On May 30th of this year, I was asked, along with Kat Griffin, to give the annual Salzberg Memorial Ethics Lecture for the Provincial Health Services Association of British Columbia.  I wrote the lecture that we both delivered, which we did on behalf of the Adult Leadership Committee of FASD Change Makers, so it is written as “we”.  I wanted to share the words I wrote and we used with all of you.

This is what I wrote:

On behalf of the entire Adult Leadership Committee (better known as the ALC), we want to talk about the language of FASD, its diagnosis and the stereotypes that go with it.  These words are from all of us on the committee but they represent the thoughts of many hundreds of people with FASD.

Because the title of this Memorial Lecture is “The Language of Diagnosis: The Unintended Messages in the Language We Use”, and after reading the description for this presentation which includes the “impact of labelling”, and the words “increasing resilience and capacity”, the ALC members talked a long time about what we think we can, want to – and should – tell you about the “unintended messages” from the point of view of many adults who have FASD and the teens we mentor, and the children we all once were, because “unintended” messages all too easily become unintentionally “intended” messages.  What we want to say might not be what you were expecting but it needs to be said.

All of us on the ALC work to change perceptions, and one of the main ways of doing that is by speaking openly and honestly about what we think; what we have learned, and in this case, how people with FASD experience the “messaging” that is used across ALL of society.

“Unintended messages” and “labelling” have a major – and traumatic – impact, and the KEY one, the one that people with FASD hear everywhere, from many, many different people and places, over and over again, is that there seems to be something terribly wrong about having FASD; so wrong that we cannot talk about it, or call it by ONE name; so wrong that there are only negative, stereotyped and stigmatic outcomes to be avoided at all costs by refusing to even name the disability; or when it is named, we need to change the name.

So wrong, that only shame can ever be associated with this diagnosis; so wrong that a person with FASD is not even able to tell others they have the diagnosis for fear of the reaction; so wrong that no one can even talk to US about what WE think – what we KNOW – what we WANT; so wrong that even YOU struggle with the IDEA of diagnosis and its cause.

The world sees – and seems to understand FASD – only in the extreme – meaning that it assumes that everyone with it will become –and REMAIN – a criminal or non-functioning statistic; that this is the only possible outcome regardless of anything you do.  So untrue – We know hundreds of people with FASD and most of us are not disasters.  People with many difficulties – yes; but what people think of and are afraid of when you mention FASD – no.  But because of the negative labelling of FASD, society really does not DO much of anything and often, does nothing positive at all to change or improve outcomes.

There has also been much talk over the years about the name FASD.  Society seems to think that if you change the name – call it anything else – that will somehow change perceptions, change beliefs, change outcomes and make everything okay – without doing the work that needs doing.  They also seem to think that if you don’t actually make the diagnosis in the first place – at all – then somehow that will avoid the shame, blame and stigma that society has created around alcohol, and then the outcome will miraculously be different – again, without doing the work that needs doing.

So, we asked ourselves, what is the definition or meaning of the word “labelling”?  We looked it up and this is what we found:  as a noun, it means:  “a classifying phrase or name applied to a person or thing, especially one that is inaccurate or restrictive”  and as a verb, it means: “assign to a category, especially inaccurately or restrictively”.

And…..MOST importantly, when we googled “what does labelling a person mean?” we found this: “Labelling theory is a theory in sociology which ascribes labelling of people for control and identification of deviant behaviour”.  Labelling is often the same thing as pigeonholing or the use of stereotypes (something we know too much about) and has the same problems.

People who have FASD are not “things” and we are not “categories”, we do not need “classifying” or “control”, we do NOT need inaccurate and incomplete descriptions of us, and we are no more “deviant” than is anyone else.  But these are the pigeonholes and stereotypes that accompany FASD – why?  Because no one it talking about any of this in a healthy way, and no one is talking to any of us who maybe know a lot about this.

So…. just let everyone continue to think we are – and allow us to be globally  “inaccurately and restrictively” LABELLED – at our best – as bad people who choose to make mistakes, are lazy, unmotivated, irresponsible, indifferent, uncaring, and just making excuses for poor behaviour.  And at worst, globally as criminals and deviants in need of control.  Same shame, same blame, same stigma, SAME PROBLEM still not avoided!

In the absence of a medical diagnosis for our birth defect syndrome, and an accurate understanding by society of what it ACTUALLY means, the cause of many of our health issues (which few people even think about) and brain injury, the rights of those of us who have FASD get trampled on in every area of our lives.  No one would punish a blind person because they cannot see – or tell them – and the world – that they really CAN see when they want to and that being blind is a choice.

But this is really OUR diagnosis and when a diagnosis is NOT made because of fear of labelling, of stigma, of the diagnosis itself becoming a self-fulfilling prophecy (like….REALLY????), well, with good intentions, that is exactly what you have just done.  That is just a cop-out that lets society off the hook.  And how would changing its name change the cause of my disability?  As Shakespeare said “A rose by any other name would still smell as sweet”.  So how would calling FASD something – anything – else, change the cause?  And people will ask about any disability with a name they do not know – because they always do – “what caused it?”  Again, you still have the same problem requiring society to talk about things it would rather not talk about. And what is any medical diagnosis supposed to be FOR, anyways??  We think it is a blueprint for what to do, for the most effective treatment, so if you use the wrong blueprint, how do you expect to have the right treatment for the best outcome?  No one would try to build a ferryboat using a blueprint for a house, or use penicillin or essential oils to treat cancer.

We want to ask: WHY are we still SO confused, SO mixed-up and SO ashamed of FASD??  WHY are we still SO uncomfortable – even with the name – and with making the diagnosis of FASD?  WHY do we still not understand that the diagnosis is for the benefit of the child or the person with FASD?  Would we be uncomfortable making the diagnosis of alcohol use disorder or alcoholism in the mother because it might cause pain for the child?  Would we stumble over the diagnostic terms of “alcohol use disorder” or “alcoholism”?  We don’t think so because ACCURATE diagnosis is the pathway to understanding and treatment.  And WHY do we still shame and blame women who use alcohol – for any reason – in pregnancy?  WHY do we still have SO little understanding?

And we have to ask:  if those of us with FASD who are supposed to have very little insight can see these problems and ask these questions, what is the problem with the rest of society?  How do we, as a society, expect to change things if we cannot even begin to recognize and discuss these most basic of issues?

Because the more you try to find a better/different/less painful way to “label” the diagnosis of FASD, the more you LABEL all of us, women who use alcohol and people with FASD, in ways that are disconnected, unrelated, separate, incompatible, and yes, the very things you are trying to prevent – demeaning and stigmatizing – from the reality.

And WHY are those of us who have FASD seen as “less than?”  Because, believe us, that is the very clear message that people with FASD have been getting for years.  And that has NOTHING to do with its cause, and EVERYTHING to do with the biases and beliefs of society.

This must change if we want to change outcome because you CANNOT “increase capacity” (find and build the REAL potential of someone with FASD) if you do not deal with this messaging problem.  And, if you want to talk about “increasing resilience”…..well, then, you need the best definition for what it is you are actually talking about…..and that is from the Miriam Webster dictionary which defines it as:   “the capability of a strained body to recover its size and shape after deformation caused especially by compressive stress. 2 : an ability to recover from or adjust easily to misfortune or change.

So…….we have a problem!!  Our bodies are always “strained”; we suffer from ENORMOUS amounts of “compressive stress”; and we do not recover or adjust easily to misfortune, and ESPECIALLY, “change”.  This is the nature of FASD, no matter WHAT you call it or do NOT diagnose.  It changes nothing.

FASD is a medical diagnosis – it has just as much legitimate validity as any other diagnosis of any other medical birth defect condition regardless of the cause.  Diagnosis is, believe it or not, a GIFT to those of us lucky enough to actually have that diagnosis, and one that each of us will grow to understand and incorporate as only ONE part of ourselves provided we have the right support and acceptance.  It will not define us; it will guide us.

 It tells us – and everyone else with FASD – WHAT we have and WHY we have it and what we might expect to be part of it; the things like difficulties with all things math, sensory issues, anxiety, and health consequences that maybe we cannot avoid.  We have a right to that information.  No one would withhold or try to prevent our ACTUAL and TRUTHFUL diagnosis or pretend otherwise if we had anything else.  The fact society has such difficulty with the CAUSE of FASD is the issue here, not the name of the syndrome; changing the name will not change the cause and it won’t change the messages that people with FASD currently hear.

We have a right to be angry; to process and work through our pain and grief – we can and we do.  We have a right to have people help us to understand alcoholism, alcohol use and addiction in all their contexts.  We have a right to learn to understand our birth mothers – we can and we do.  We have a right to work things through and make our peace with our accurate diagnosis and come to terms with its cause; we can and we do.

No one moves forward when you are pigeonholed.  You cannot become a whole person – you are – and REMAIN – LABELLED – and not even your own definition of that label, but someone else’s.  Only when we have accurate information can we begin to become the whole people we actually are.  And that is why the language people use is SO important.   Not being able to talk about FASD, and we mean REALLY talk about it, especially with others who have it and UNDERSTAND it in ways only those who have it do, gets in the way of understanding, accepting and valuing yourself and helping society to do the same.  With the very best of intentions, the language people use stereotypes people with FASD – it labels us almost totally in negative ways.   It is SO important for children, teens and adults with FASD to hear the WHOLE story of FASD.  But all they can usually access is the negative.  The internet – bad place for those with FASD – that shows extreme brains or photos that are not us; internet sites that focus only on failures, never even small successes; rants by angry or frustrated people; slams at women who use alcohol (how does that help??); educational talks that focus only on long lists of negative signs and symptoms; supports workers that keep insisting that a person with FASD could do “it” if only they “tried harder” or “longer” or “better”; negative media (because when is there EVER any positive media??).

The messages that people with FASD all hear – starting very early on – and it is constant – is that we are not “good enough” the way we are.  There is something REALLY wrong with us; that we need “fixing” and “controlling”.  They keep us from knowing anything or anyone else; because people are afraid that FASD “behaviour” is somehow “catching”.

What we really need are positive relationships and access to mentors who have survived the bad stuff; those who can best teach us about what it means to have FASD in ways that normalize the experience and teach us how to deal with limitations instead of making us feel like constant failures;   Who can teach us how to be our best in spite of the things that we cannot do and, most importantly, teach us how to hold our heads up; to look the world straight in the eye and to own our diagnosis as only ONE piece of ourselves; so that it does not define us.  In order to accept what you cannot do, you also have to discover and learn what and how you CAN do, and that comes best from others with FASD.

Because when you do NOT have that, the constant negative messaging can break every one of us eventually and we pay a steep price for society’s lack of value for us the way we are; and we never get the opportunity to experience another reality that will make a difference.  Just because I am smart does not mean I do not have a really significant disability that needs help and support in many areas – like my math scores are at the first percentile, my memory is just awful, I am EASILY overwhelmed and my anxiety can be a real problem.   And because I DO have a disability does NOT mean I am NOT smart in some areas!!  I have high level language skills, am a good writer and love Shakespeare (not that Shakespeare does me any good – no offence to the Bard!!).

Messaging must be truthful because we already KNOW we cannot do at least some things.  And, in point of fact, we KNEW when we were children.  We are not stupid, even those of us who have an intellectual disability with our FASD.  Telling us we can, when we KNOW we cannot, devalues what we know about ourselves and tells us we should not trust what we know.  This gets totally lost in translation and because it gets lost, it never gets used.  And that makes us feel worthless when we cannot do it “all” or even just do “it”, whatever “it” is.

It’s all about “should” – someone else’s expectations of what is, or should be, or should not be, and that speaks to the unintended negative messaging about FASD.   WHY?  Do we have less value because we have FASD?  Why is what we are able to do – and with the right diagnosis and understanding, it can be a fair bit to quite a lot – not seen as good enough?  Is our contribution to society less valuable than that of others?

We think people with FASD are valued until we become a cost.  The more society devalues what we CAN contribute – and it is a lot – the more we become a cost.  When we become a cost, what is the tipping point?  What happens when our cost outweighs the value we can give?  Does this mean we are less valued members of society?  Is our worth less than yours?  Do we become disposable?  Do we have a meaningful and inclusive place – and a future – or not?

You must choose whether or not to answer these questions. But we think you need to.

Because for us, FASD is NOT just a disability, it is a life experience.  That is why we, as FASD Change Makers, choose to speak up and speak out and want to Make Change happen.  Because, as part of a larger group of adult FASD Change Makers, all of whom have overcome much difficulty, poor starts in life and a million things gone wrong; all the bad stuff people usually think about when they think FASD, and who still struggle every day with all kinds of problems, we choose to challenge your thinking and to start the conversation.  We know you are hearing us, but are you truly listening?  Because perception is the problem here.

In FASD, there is not much difference between being private and being ashamed.  Not talking about it just perpetuates the pejorative labels, the stereotypes, the shame and the stigma – which should not belong to us or to the women who struggle with alcohol – and helps no one.

But talking MUST start from a place of honesty and respect.  To do otherwise shames and devalues us and every other person with FASD and every women who uses alcohol in pregnancy.  Actually, it shames and devalues all society.

Words have enormous power:

They can drive you apart or bring you together

Words can cause pain or they can cause healing

They can lead to ignorance or they can lead to understanding

Words can make you helpless or they can make you hopeful

They can break you down or build you up

Words can tear you apart or sew you back together again

They can focus on your weaknesses or they can find your strengths

And words can teach you about everyone else…………. AND they can teach you about yourself.

On behalf of the Adult Leadership Committee of FASD Change Makers, and all the hundreds of people with FASD that we know,  and all the thousands we do not, thank you for listening to our collective voice.

To read more of CJ’s blogs follow this link

A summary of the 2017 UBC pre-conference day titled “Stigma and Stereotypes – Where Do We Begin?”  can be read here

The FASD Hub’s Language Guide provides suggested language for use in conversations, presentations and reports about FASD in Australia.