page_title: June Oscar
section_title: Fighting Fetal Alcohol Spectrum Disorder (FASD)
hierarchical_section_title: June Oscar / Fighting Fetal Alcohol Spectrum Disorder (FASD)
caption_attribution_description: English: Tristan by Melanie Hogan
context_page_description: June Oscar AO is an Australian Aboriginal woman of Bunuba descent, Indigenous rights activist, community health and welfare worker, film and theatre producer, and Aboriginal and Torres Strait Islander Social Justice Commissioner. Oscar is best known for her fight against Fetal Alcohol Spectrum Disorder and work in improving the lives of Aboriginal people in remote communities. In 2007, she led the successful campaign for alcohol restrictions in the Kimberley town of Fitzroy Valley.
  On 10 June 2013, the then Governor-General of Australia, Quentin Bryce, awarded Oscar an Officer of the Order of Australia, for "distinguished service to the Indigenous community of Western Australia, particularly through health and social welfare programs".
  In October 2019 Oscar was appointed to the Senior Advisory Group to help co-design the Indigenous voice to government.
context_section_description: Fetal Alcohol Spectrum Disorder (FASD) is known to impair memory, and the ability to learn and retain information. FASD is also considered a serious threat to preserving Aboriginal cultural traditions in the Valley, which are passed down by elders and not recorded in writing. Aboriginal cultural knowledge is taught to new generations through song, dance and storytelling, and Oscar was concerned. “These kids may have speech delays and difficulty remembering. But memory is critical to our whole heritage because Aboriginal culture and language is passed down orally. Language is the essence of who we are; it identifies us and the world we come from”.
  Around a year after alcohol restrictions in the Valley came into place, in October 2008, a community meeting led by the MWRC and Nindilingarri Cultural Health Services gathered to talk about FASD and other problems related to alcohol. People who attended the meeting were concerned about the high number of children and families suffering from the symptoms of FASD and Early Life Trauma (ELT). ELT is a term that defines issues that have a negative influence on a child's development, such as poor nutrition, neglect, stress and violence. In November 2008, Oscar jointly developed a draft strategy to fight these issues titled Overcoming Fetal Alcohol Spectrum Disorders (FASD) and Early Life Trauma (ELT) in the Fitzroy Valley: a community initiative.
  This strategy was called the Marulu Project, named using a word in the [Bunuba language that means "precious, worth nurturing". The Marulu Project focused on: FASD and ELT prevention, including creating awareness in communities that the project existed and educating pregnant women to prevent alcohol abuse; FASD diagnosis, including the development of diagnostic systems; FASD support, including the establishment of a map of support services available in the valley and a network of carers; conversation at a high level on FASD, including strategic communication through media channels, discussion with the scientific community, and increasing awareness through strategic partnerships; strengthening the project's capacity to fight FASD through participating in workshops and attending conferences; identifying existing resources and securing new resources, including approaching the government and organisations for funding; and engaging resources in the local community in FASD prevention, diagnosis and support.
  In 2009, Oscar and other leaders of the Marulu Project approached the George Institute for Global Health (The George) regarding the possibility of conducting a study on the prevalence of FASD in Fitzroy Valley. The George had previously developed Yajilarra (2009), a documentary film on Oscar's group of Aboriginal women's campaign to limit alcohol consumption in Fitzroy Valley, and was considered a suitable organisation to provide medical research services to the project. The purpose of the study was to discover how many children were affected by FASD, attract funding and resources to provide care for the children affected, and prevent the disorder from occurring.
  The prevalence study was called the Lililwan Project and Oscar was appointed its Chief Investigating Officer. It focused on children aged between seven and eight years in the Valley and was named using a word in the Kriol language that means ‘all the little ones’. Through consulting with Aboriginal communities and service providers before proceeding with the study, Lililwan Project set an example for all of Australia to see on how to successfully manage Indigenous affairs. The consultation process was fundamental to getting people's consent to conduct the research. Local women were trained as researchers, were involved throughout the study, and worked as ‘community navigators’ who persuaded people to participate. The Lililwan Project achieved an extraordinary participation rate of 95% and had a guiding a set of principles and preconditions:
  Principles
  First, to do no harm.
  Commitment existed to a process of two-way learning.
  All activity had to provide short- and long-term benefits fo
caption: Tristan (2011) was a follow up to the film Yajilarra and portrayed the struggle of a 12-year-old Aboriginal boy who suffered from severe FASD.
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