Working with communities to address Fetal Alcohol Spectrum Disorders

Facilitating and enabling: Working with communities to address Fetal Alcohol Spectrum Disorders

Australasian Fetal Alcohol Spectrum Disorders Conference

Royal Brisbane and Royal Women’s Education Centre,
Royal Brisbane and Women’s Hospital,
Butterfield St, Herston, Brisbane

Abstract:

Aboriginal and Torres Strait Islander Social Justice Commissioner Mick Gooda will examine the role of governments and other stakeholders in working with Aboriginal and Torres Strait Islander communities to address Fetal Alcohol Spectrum Disorders (FASD). Commissioner Gooda will argue that to be effective solutions must be community owned and generated. Aboriginal and Torres Strait Islander communities are to be given and take responsibility for issues like FASD. Processes are to be developed to foster community buy-in and consent to solutions. External partners, including governments, have a key role in facilitating and enabling Aboriginal and Torres Strait Islander communities to take control. This includes removing structural and systemic impediments. If governments apply these principles they can shift from a service delivery paradigm to become enablers and facilitators of community-based change.

Acknowledgements

I begin by acknowledging that we sit today on the lands of the Undambi People, a clan group of the Turrbals. The City of Brisbane shares this ancient country of the Turrbals with the Jagera People.

My people are the Gangulu from the Dawson Valley in Central Queensland. On behalf of my Elders I also pay tribute to your Elders, both past and present, for their continued struggle for their country and their culture.

I acknowledge The Hon Dr Sharman Stone MP, Member for Murray in Victoria who has always been a close friend of those working with FASD.

I also acknowledge Michael Thorn, CEO of FARE. Michael and I worked together in Perth and he has always been one of those people who has the knack of making things work.

And I acknowledge all of you, working at giving all Australian children the best start possible at the beginning of their lives. The work that you do addressing FASD is sadly far too much a critical factor to this best start possible in too many young lives here in Australia.

Finally, I dedicate this presentation to the women of the Fitzroy Valley.

Aboriginal and Torres Strait Islander Social Justice Commissioner and human rights

For almost four years I have held the office of the Aboriginal and Torres Strait Social Justice Commissioner within the Australian Human Rights Commission. This position provides me with an opportunity to make a significant contribution to the quality of life our people are able to enjoy.

This year marks the 20^th year since this position came into being as a result of the Royal Commission into Aboriginal Deaths in Custody, the Native Title Act and a Commission Inquiry into racial hatred.

As Social Justice Commissioner my agenda has focused on building relationships using a human rights-based approach. Relationships are built on reciprocated understanding, dialogue, tolerance, acceptance, respect and trust.

I believe human rights are one of the most powerful tools to help build good relationships. To guide that work that I do in this position, I have particularly used the United Nations Declaration on the Rights of Indigenous Peoples (the Declaration). The Declaration is the foundation document articulating how human rights standards apply in the Indigenous context. It contains a number of key principles underpinning the rights it protects. Those key principles can be summarised as:

• First, self-determination
• Second, participation in decision-making and free, prior and informed consent
• Third, respect for and protection of culture
• Fourth, non-discrimination and equality.

In addressing difficult and sensitive issues like Fetal Alcohol Spectrum Disorders (FASD) these principles provide significant guidance. Today I am here to talk about the role of governments and other stakeholders in working with Aboriginal and Torres Strait Islander communities to address alcohol-related harm including FASD. Using the principles from the Declaration, supported by the evidence, I suggest that the role of governments and others is to facilitate and enable Aboriginal and Torres Strait Islander communities to take control of their response to FASD.

Fitzroy Valley and alcohol harm

Let me quickly tell you about one relationship that has developed during my tenure as Social Justice Commissioner. It is with the communities of Fitzroy Valley, in particular with people like June Oscar who is talking after me.

In my first Social Justice Report in 2010 I undertook an extensive case study on Fitzroy Valley. In 2007, a number of senior Aboriginal women led by June Oscar, Emily and Maureen Carter and Marmijee Hand and supported by some senior Aboriginal men, decided that something needed to be done about the increasing violence and dysfunction in their communities. I use the word 'some' when referring to the men of Fitzroy advisedly, because the women I mention we're vilified in parts of their community for having the audacity to take a stand that would eventually change the status quo.

Alcohol abuse was rife, causing violence, depression and intergenerational harm. In 2007, there were 13 suicides over a 12 month period. If this rate of suicide was applied to a population the size of Perth, that would equate to 500 suicides a month.

In my 2010 Social Justice Report I case studied a story over the course of three years, about how the community of the Fitzroy Valley led transformative change in their region and lifted their communities out of chaos and despair. June Oscar was notable in this. Their actions included a community-led approach to FASD. The case study outlined the process of moving from community crisis to community in control. At the beginning of the case study I used a very poignant quote from June, a part of which I would like to repeat here:

It is a story of colonisation; the threat of losing our cultural authority to manage our societies; and the despair that has come from that disempowerment. It is a story of grief and trauma and the continued pain of living with grog, drug and violence.

... I want to tell a different story. It is about how Aboriginal people can be the authors of our stories and not passive and powerless subjects in stories told and written by others...

The start of the journey has depended on the leadership of the Aboriginal community but the journey from this point on will largely be shaped by a partnership that we can create and build with governments.

I repeat that quote here because June was 100% correct. To address the issues confronting our communities such as alcohol abuse and FASD, Aboriginal and Torres Strait Islander peoples have to become “authors of our stories”. That is we have to take control and take responsibility.

However, we cannot do this alone. Our communities need partnerships with government, businesses and NGOs. The role of these players is to facilitate and support us to take responsibility. This includes removing structural and systemic impediments that hinder Aboriginal and Torres Strait Islander communities from taking control.

A human rights based-approach

I will next demonstrate how the principles from the Declaration can guide responses to FASD.

Self-determination - when realised, creates a community-wide agency that stifles the toxicity of victimhood and powerlessness. Michael Wehmeyer, Professor of Special Education at the University of Kansas states that:

[S]elf-determined people are causal agents; they make things happen in their lives. They are goal oriented and apply problem-solving and decision-making skills to guide their actions. They know what they do well and where they need assistance. Self-determined people are actors in their own lives instead of being acted upon by others.^[1]

A sense of control is transformative. This is precisely why it improves wellbeing. It can transform an individual or a community from the passivity of victimhood into pride, action and responsibility. A self-determining community not only exerts control but it also self-regulates. And it looks after the most vulnerable in its community. It decides how disputes are resolved, how decisions are made, what protocols for behaviour are acceptable, and it takes responsibility to ensure the well-being of the entire community. A community like this determines how it will address difficult and sensitive issues like FASD. It will determine what support it needs from partners including government and service providers.

Those working with Aboriginal communities need to work with and in ways that empower communities to become agents of their own change. The role of governments is to remove the obstacles that prevent us from taking control and to build capacity within our communities so that we can step up and take on these responsibilities.

Here I would like to point to some interesting developments in the Northern Territory. On 31 October the Aboriginal Peak Organisations NT launched a set of principles aimed at empowering Aboriginal organisations and communities in the NT to take control of their futures. A number of NGOs have publicly endorsed these principles, designed to guide their interaction with Aboriginal organisations and communities in the Territory. The principles have been designed to empower communities and shift from a “narrow service delivery focus to one based on a development approach”.^[2]

Participation in decision-making and free, prior and informed consent – Governments, NGOs or industry have obligations to ensure that Aboriginal and Torres Strait Islander peoples actively participate in decisions and processes that affect their rights.^[3] Furthermore given the sensitive nature of FASD it is imperative that prevention, intervention and management strategies are developed in partnership with the people impacted by FASD including children, women, families and communities.

The evidence is clear, crystal clear, that solutions to FASD must be owned by the community. They must have buy-in from the community. And they must be community generated. The project being undertaken in Fitzroy Valley to address FASD is founded on community buy-in. It is led by the community and supported by organisations such as the George Institute and Sydney University. It encapsulates the partnership model perfectly. I will allow June to go into more specifics but the community and continuing consent processes are in my mind why there has been such a high participation rate from the community in the project.

This project in my mind is the embodiment of this principle of people participating in decisions and of free, prior and informed consent.

Respect for and protection of culture – As you all know impaired memory and an inability to learn and retain information are major components of FASD. As such FASD is a genuine threat to the preservation of the Aboriginal and Torres Strait Islander cultures. Behavioural and learning problems also limit educational gains. Given our oral traditions of passing down cultural knowledge through stories and ceremony, there is a very real possibility that cultural knowledge will be lost as a result of FASD. The majority of cultural knowledge is not part of a written history. Therefore, its continuation is reliant upon the ability of elders to pass this knowledge on to future generations.

The threat to the Aboriginal cultures in the Fitzroy Valley was one of the main drivers for the communities to decide to take action to address FASD. International human rights standards have developed to the point where states have obligations to work with Indigenous peoples to implement measures for the maintenance, protection, development and transmission of culture and cultural knowledge.^[4] Let me stress this, the obligation is to work with and not do to.

It is also out of this principle that the concept of cultural competence and cultural security emerges. We need to work with people who understand our world view, our way of working and our way of communicating. And sometimes it's as simple as understanding the context in which our people live.

Let me give you an example far removed from the Fitzroy Valley. Last week in Sydney I met Senator Vern White from Canada. Vern formerly worked for the Royal Canadian Mounted Police, the Mounties, and he told me of a strategy to recruit Inuit people into the Mounties from Nunavut, a remote province in Canada up near Alaska.

One of the exam questions involved scenarios of situations, such as domestic violence, which could either escalate or settle using a rating scale of red, amber or green.

There was a spectacular failure rate amongst Inuit candidates to this question. Vern, himself an Aboriginal Canadian, had to confront other questions about the intelligence of the Inuit, their ability to exercise the judgement so crucial to the role of a police officer and the wisdom of even thinking about recruiting Inuit into a police force. These questions went to the heart of the entire strategy, because judgements were being made.

Then a light bulb moment happened when someone realised there are no traffic lights in Nunavut. The question used a scale that had no relevance in their lives at all, and in which they had no experience.

Back in Fitzroy, the FASD project is run by the women, ably and aptly supported by the George Institute, so the world view of Fitzroy has been embedded from day one. And I think you will agree the results speak for themselves.

As for the Inuit, well the question was reconfigured using references to which they could relate and they saw spectacular results in the opposite direction, with the Inuit candidates having a far greater pass rate than the rest of the population

Equality and non-discrimination – Access to critical services is a key component of equality. Aboriginal and Torres Strait Islander communities need access to adequate, appropriate and affordable health care for women and families. To help prevent and address FASD these services need to include sexual and reproductive health as well as health education on the harms caused by FASD.^[5] And it is imperative that these services are delivered in a culturally appropriate and safe manner.

The government has an obligation to remove all barriers that inhibit access to health services, education and information. There are many steps the government can take to improve access to services. This includes providing training for health and other professionals on FASD, funding early intervention services and ensuring there is appropriate community care for those affected by FASD. Support services are needed across education, health, community services, employment and criminal justice sectors for the communities, families and individuals affected by FASD.

Conclusion

To conclude I want to return to Fitzroy Valley. It is beautiful country. In Fitzroy there is strong leadership who are striving for a better future. The communities in the Valley are connected to country and culture. The story of Fitzroy Valley in recent years is a story of how strong local leadership can drive change within their communities.

Rather than a coercive, top down approach to change and development, the work in Fitzroy Valley addressing FASD is true community engagement and self-determination in practice.

For me the story of the Fitzroy Valley shows how strong local leadership, supported (rather than dictated to) by Government, can result in communities dealing with the most sensitive and intractable issues on their own terms. For me it shows that we can be masters of our own destiny.

But confronting challenges is nothing new to Aboriginal and Torres Strait Islander peoples in Australia. Our people having been doing this for over 60,000 years. We are used to doing the hard things and surviving and in this vein I end by saluting the women of Fitzroy for confronting this issue. Women who have been prepared to ask the hard questions of themselves, women who put their children front and centre of their lives, women who lead from the front.

Thank you ladies and gentlemen.

^[1] M Wehmeyer, Self-Determination and the Education of Students with Disabilities, ERIC Clearinghouse on Disabilities and Gifted Education Digest No E632 (2002). At http://www.hoagiesgifted.org/eric/e632.html (viewed 7 November 2013).
^[2] Aboriginal Peak Organisations NT, Principles for a partnership-­‐centred approach for NGOs Working with Aboriginal organisations and communities in the Northern Territory (2013). At http://apont.org.au/attachments/article/63/210313%20-%20Principles%20for%20NGOs%20-%20Final_v2.pdf (viewed 7 November 2013).
^[3] Expert Mechanism on the Rights of Indigenous Peoples, Progress Report on the study on indigenous peoples and the right to participate in decision-making, Report to the Human Rights Council, 15th session, UN Doc A/HRC/15/35 (2010), para 4.
^[4] United Nations Declaration on the Rights of Indigenous Peoples, UN Doc A/RES/61/295 (2007), arts 11, 12, 13, 31.
^[5] AHRC submission.