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When the Adult Leadership Collaborative (ALC) of FASD Changemakers did our second Lay of the Land Survey on Quality of Life for Adults with FASD, I was the one who did all the background research and definitions for quality of life because that was what we thought we were going to try to measure.

The two definitions we agreed on, that we liked, defined quality of life as (1) “the degree to which a person is healthy, comfortable and able to participate in and enjoy life events” and (2) “the degree to which a person enjoys the important possibilities in his or her life”. The italics are mine because these are the key words we wanted to look at.

But the more I investigated it, and the more the group looked at the actual survey results, the more it became obvious that we were not actually hearing about quality of life at all, but about the ongoing lack of equity in the lives of adults with FASD.

Because equity is what you need to have for any kind of quality of life. Which, in policy, supposedly happens, but in practice – in real life for people with FASD – does not, because there is almost no opportunity to use personal abilities, capabilities or strengths to reach personal potential. 

So, I thought, why not take what I said about equality and equity in the introduction to our various presentations of the survey results and write it into a blog.

Equality wants to make everyone equal by treating everyone the same and does so in the name of fairness, which sounds good in theory.  Doesn’t work very well in practice generally and certainly doesn’t work in FASD, because we are not the same as other people and we are not all the same within FASD itself and we should not have to be.  But equity is supposed to be – and should be – about giving people what they need to be successful – and this does work. I think this is far more important because we are not all the same and some people need more help than others. 

Equality tries to encourage making things fair by treating us all the same; but it cannot work unless we all start from the same places and have the same experiences and the same abilities and require the same help over the same areas.  Which, very clearly, we do not.

In the reading I did about this topic, I learned that equity is really about dealing with the underlying differences of opportunity and access to resources within all the systems and services that make up society.  But I think equity also really requires an understanding of the causes of the outcomes in FASD that people see if you want to change them.  And that is something that as a society, we are doing a very poor job at.

Real equity needs to recognize in a truly meaningful way that every person has different life circumstances and allocate things differently.  Not just the usual lip service to the idea, but real access, eligibility, funding, resources, support, and opportunities.  Because if you truly believe in the idea of quality of life and the right of all people to have and maintain at least some of that, then you need to provide these things on an on-going basis.  While there will never be a one-size-fits-all solution to the difficulties people with FASD have and experience, there should – and could – be a right-size solution for each person’s needs.

And that, in a nutshell, is the difference between equality and equity; between being treated equally and being treated equitably. Equity is a process, the many actions that can be taken to get to equality as the outcomes that we want.  And if it is not made actionable then what real meaning does it have?  Because if it does not lead to positive and meaningful changes in the conditions of the lives of so many people with FASD, what is its purpose?

I want to quote two people:

An economist named Ha-Jon Chang said “When some people have to run a 100-metre race with sandbags tied to their legs, the fact that no one is allowed to have a head start, does not make the race fair. Equality of opportunity is absolutely necessary but not sufficient in building a genuinely fair and efficient society”

And the late Justice David Vickers of the Supreme Court of British Columbia said that “people with FASD need differential treatment to more nearly equalize outcomes”.  And he said this more than thirty years ago. 

So how long do we have to wait?

We need society to make an intentional commitment to doing things differently.  It is about developing, providing and implementing services that people with FASD need because equity is essential if that opportunity, along with access, meaningful inclusion and the chance to meet and maximize our potential is to be equally available to all of us with FASD.

Only then can you get to quality of life.

Please consider that there will always be things in the way; reasons not to do; evidence that does not exist.  That has always been the story of FASD and without change, will continue to be so.  But what if everyone started today; right now, to meet the challenges of equity…. where would things be in ten years?  Because ten years ago, no one would ever have believed that those of us in the ALC of FASD Changemakers could do what we are doing today.  And please know that we came from the same traumatic backgrounds as does almost everyone with FASD.  But equity happened for us…. simple equity.

So, a couple of thoughts and questions I want to leave you with:

  1. To access equity, you must first be deemed worthy
  2. And those found to be “worthy” are funded in some manner or are at least eligible for services that can support and make a difference in their lives
  3. Those who are not deemed worthy…..are not
  4. So…. are people with FASD worthy…. or not?
  5. And the real question for everyone is:  can a person with FASD – at any age and at any point – ever reasonably expect equity in life?

Because FASD is an equity issue and equity matters.

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

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