Launch of Gilbert and Tobin papers addressing discrimination against people with FASD in Commonwealth and State and Territory law and policy

Recognition: A pathway to realising our rights and ending discrimination

Introduction in Bunuba

I recognise the Gadigal people of the Eora nation, and pay my respects to their elders past, present and emerging.

Good morning everyone, and welcome to the launch of a number papers addressing discrimination experienced by people with Fetal Alcohol Spectrum Disorders – FASD – across Australia. These papers confront the fact that discrimination occurs because FASD, as a disability, does not fit within the laws and policies of our Commonwealth, State and Territory jurisdictions. The papers focus specifically on recognition within criminal law, a first step I am sure to being applied more broadly.

I certainly know what it is like not to fit within the dominant conception of culture and society. Aboriginal and Torres Strait Islander peoples have long fought and continue to fight to have our unique rights recognised in this nation’s laws and policies.

As the first woman to be appointed to the role of Aboriginal and Torres Strait Islander Social Justice Commissioner I am acutely aware of the need to protect the rights of the most vulnerable. The most vulnerable being those with limited protections of their rights, who will often experience multiple and intersecting forms of discrimination.

When I think about FASD not fitting into our ‘normal’ conception of a disability, I think about our children and their parents, non-indigenous and Indigenous families, those in remote and regional Australia, or in city suburbs. FASD knows no bounds, but too often discrimination does. I also think about the people who feel the hand of discrimination daily and who also have and live with FASD.

For instance, on average Indigenous people with a disability will experience more discrimination than non-indigenous people with a disability and without a disability.  As Gilbert and Tobin’s papers highlight, FASD is not even recognised as a disability. This makes it extremely hard to determine the level of discrimination and disadvantage that people with FASD are experiencing. I have no doubt that it is great, I have seen it firsthand.

As these papers state, to gain access to additional supports those with FASD often need a diagnosis of an intellectual disability, which means they must have an IQ below 70. This is not the case for many people with FASD, who can have behavioural and neurodevelopment problems but an IQ greater than 70. For those already experiencing multiple forms of discrimination, the unrecognizability of FASD within legal and policy definitions compounds harm and further entrenches inequalities to accessing essential services and supports.  

When we don’t fit the definition, and society doesn’t recognise all of who we are, our rights are diminished. We can easily be discriminated against, our freedoms are then curtailed, and our life trajectory severely impacted. The absence of our rights within the legal and policy apparatus of this nation leads to serious real-life consequences. There is nothing abstract about not fitting the definition.

In my role as the social justice commissioner it is my responsibility to monitor the recognisability and realisation of human rights for Aboriginal and Torres Strait Islander peoples. To end discrimination, our rights must be formalised through constitutional, legislative and political means. To do this we must use the most comprehensive frameworks in articulating our rights – the United Nations Declaration on the Rights of Indigenous Peoples, and when considering FASD, and our young people the Conventions of the Rights of the Child, and how these frameworks interact with the Conventions of the Rights of Persons with Disability. These frameworks are a critically important vehicle to guide the delivery of justice in this nation and to eradicate discrimination, particularly discrimination that intersects.

But while we struggle to incorporate the articles of these frameworks into domestic law, legal practitioners in Australia continue to have a fundamental role to ensure that Australian law and policy is inclusive of all. They have a responsibility to ensure that our rights are protected, and we are all able to live life to the fullest. The law should always strive to guarantee our human rights and to deliver justice to all Australian citizens no matter our circumstances or abilities. 

On that note, I want to commend Gilbert and Tobin, a legal firm which has been an enduring friend of Indigenous peoples across Australia. The release of these papers are part of their ongoing commitment in striving to improve the law so it does reflect all our needs. I want to pay special thanks to Anne Cregan who I know has worked tirelessly to produce these important papers. These papers are a vital step in delivering justice where discrimination has all too often occurred.

I have known Anne for a long time. Our working partnership began in 2009 in my earlier career as CEO of Marninwarntikura, Aboriginal Women’s Resource Centre. As a pro bono lawyer Anne worked with our Aboriginal women’s leadership in the remote town of Fitzroy Crossing, in the Kimberley region of north Western Australia. She and others enabled us to do something quite remarkable.

Since colonisation, the law has had such a severe intervention on Indigenous traditional societal formations that as Aboriginal and Torres Strait Islander peoples we have grown accustomed to opposing it. In this case we reversed this historical relationship and made the system of justice accountable to us. In Fitzroy we came to a crisis point and we knew things had to change.

In the years 2005-2006 the people of the Fitzroy Valley attended 50 funerals. This included 13 suicides. Many deaths were young people and most were alcohol-related. The State Coroner Alistair Hope in 2008 concluded, and I quote: “Alcohol abuse is both a cause and a result of many problems for Aboriginal people in the Kimberley. The problems associated with alcohol abuse are the most obvious and the most pervasive.” End of quote.

To put a stop to this devastating crisis we had to make the law work for us. We became the first community led alcohol restrictions in Australia. Our community worked with lawyers, Ministers and senior government officials to ensure that the WA liquor licensing Act would be used for our interests and uphold our rights, instead of privileging the vested interests of the liquor licensing industry. The chronic oversupply and overconsumption of alcohol was limiting our rights and freedoms. We used the law, to stem the flow of alcohol, to help us breathe on the ground so we could better realise our rights to a full and healthy life.

Today, 10 years on from the alcohol restrictions, Gilbert and Tobin are supporting Marninwantikura in keeping the alcohol restrictions intact. As a community we have been further emboldened to secure the alcohol restrictions indefinitely with the evidence that has come from our ground-breaking ‘Lililwan’ FASD prevalence study. In 2009 Marninwarntikura and Nindilingarri Cultural Health entered into partnership with the George Institute of Global Health at the University of Sydney. Our community worked with outside expertise with women such as Professor Elizabeth Elliot and Jane Latimer to conduct a population-based study – the first of its kind. The prevalence of FASD – 1 in 5 children – was shown to be amongst some of the highest rates in the world.

Alcohol has taken a huge tole on our children. We know that the behaviours associated with FASD, hyperactivity, emotional outbursts, defiance to authority means that our children are predisposed to school failure, contact with the juvenile justice system and the risk of ongoing incarceration. It is this type of marginalisation from the system, and a profound lack of appropriate service supports which means that children in the Fitzroy Valley as young as seven are experiencing mental health issues, are self-harming, are talking of suicide, and are beginning to drink and smoke. People, children, turn to alcohol to numb the pain they experience because the system is unable to recognise their needs.

It is not hard to see from this example how a cycle of trauma becomes entrenched.  And contributing factors such as easy access to alcohol impinges on our human rights and particularly on our right to health.

As the Social Justice Commissioner, I co-chair the Close the Gap Campaign. The work we did in Fitzroy, with Anne, Gilbert and Tobin and many others, is a prime example of how we should be working to achieve our right to health. As part of the campaign we have strong principles that must be put in practice if we are to gain equality. These principles being that we must listen to Indigenous people about the health services they need, that Indigenous people must drive solutions, and that our voice must be at the decision-making table in determining how we achieve equality.

So may I be so bold to say, that the origins of the papers we are launching today exist in the positive and fearless actions of communities to overcome injustice. It exists where we have effectively put the Closing the Gap principles into practices as we did with the restrictions and the Lililwan research. Working with communities on the ground is fundamental to getting the law right, and ultimately to closing the gap in health inequality. Because the law works best when it works with us, and the positive knock on effects can be huge.

There is clearly great power and potential that exists in the partnerships between community, legal practitioners and research institutes. Developing a conduit between community expertise, lived experience and evidence can help the law to enable positive transformations on the ground.

This year 2018, I am travelling around the country with my team at the Human Rights Commission as part of the Wiyi Yani U Thangani, Women’s Voices project. We have listened to over 1,500 women and girls in various locations – remote and urban – across the country. Women are informing us of their remarkable strengths, positive initiatives, challenges and solutions for change. I can hear in their voices the evidence we require to form better policies and laws, just as we did in Fitzroy Crossing. Women are identifying issues and telling us how a system could better operate to suit their needs.

It is also in the stories of our women’s lived experience that I can see how damaging inappropriate laws and policies are. In our interconnected Indigenous society’s policy and laws effect the entire community not just individuals. I read in the papers that carers of children with FASD often do not meet the criteria of a carers allowance because FASD is not on the list of recognised disabilities.  

Let me return to the discussion of those who experience multiple forms of discrimination. In Indigenous communities’ carers of those with disabilities are predominantly women.  If they are not receiving the necessary financial support while being a full-time carer, simply they are not receiving income for the work that they are doing. This is discrimination. Both the mother and the child are experiencing injustice because they are not recognised by legal and policy definitions.

There is no jump from this to the evidence we have of the rapidly increasing rate of Indigenous children in out-of-home care, that Indigenous women in 2017 made up 2% of Australia’s female population and yet 34% of the women behind bars, and that 80% of incarcerated women are mothers. Then there is the recent research from Banksia Hill youth detention facility in Perth showing that 89% of our children within that facility have at least one form of severe brain impairment, and preliminary results show that 36% have FASD. 

When our laws and policies do not recognise us it drives this vicious cycle. The evidence that is emerging shows that by not responding adequately to alcohol harms and FASD, the system diverts to punitive measures. This being child removal, detention and incarceration. 

But, we can break this cycle and eliminate intersecting forms of discrimination. The alcohol restrictions in Fitzroy and the Liliwan research proves that when community have control many positive and transformative actions can be set in motion. Since Lililwan, Marninwarntikura has launched a holistic FASD care and support strategy called ‘Marulu’, the release of the inquiry report – FASD: The Hidden Harm – was released, leading to a national strategy with an accompanying 20 million dollars. The online FASD hub has been established, an Australian FASD diagnostic tool and guide has been published. And now we are here we are with launch of these papers. This is another vital step in advocating for the end of discrimination against people with FASD. We cannot underestimate the many knock on effects recognising FASD as disability will have in transforming our systems of support.

These papers do have a legal focus, but they have come from a history of community advocacy reflecting the need to recognise Aboriginal and Torres Strait Islander rights. I believe that these papers have the potential to set in motion much needed recognition of FASD that will address many discriminatory barriers in the criminal justice system and beyond.

When we work together we can redefine the system. We can inform the establishment of a robust legal framework which protects and cares for us. A framework grounded in the belief that incarceration is always and necessarily a last resort. Together, we can ensure that justice does not get decided upon at the point of crisis, but it upholds our rights continuously and ensures that justice is always served to our people on the ground.

Now let’s go forward and advocate to implement the recommendations set forth in these papers. Together let’s make sure that FASD is recognised as a disability. And this recognition provides the necessary supports that people with FASD deserve as a fundamental human right and a right to health.

Thank you.
Yaninyja

1. Scott Avery, (2018), Culture is Inclusion: A narrative of Aboriginal and Torres Strait Islander people with disability, (Clarke Murphy Print).
2. Scott Avery, (2018), Culture is Inclusion: A narrative of Aboriginal and Torres Strait Islander people with disability, (Clarke Murphy Print).
3. Nicolas Perpitch, Nine out of 10 Banksia Hill youth detainees have severe brain impairment, 15 Feb 2018, ABC News Online, At. http://www.abc.net.au/news/2018-02-14/majority-banksia-hill-detainees-have-mental-impairment/9435364