APAC17 was held in Sydney last week and I wanted to provide a quick summary of the sessions I attended for those who couldn’t make it. The first keynote of the conference was from June Riemer (First Peoples Disability Network) and Lee Casucelli (Positive Partnerships) who discussed the strong and deadly partnership they have created to provide support to families in indigenous communities.
June provided the cultural and historical context for this partnership. Storytelling, an integral part of indigenous life, was used as the basis for the presentation, focusing on the past, present and future. In the past, a disabled member of an indigenous community would have been accepted as they were and protected by the entire community – difference and deficit did not exist. In fact, there is no word for disability, let alone autism, in any of the aboriginal languages.
However, with time and with the influence of non-indigenous culture, this view changed. Now, according to June and Lee, many indigenous families live with fear and shame, not wanting to seek a diagnosis. In fact, there is serious under-reporting of impairment and disability in the indigenous population due to fear. There is little to no data on autism prevalence in aboriginal communities, however it’s believed that disability is generally higher than in non-indigenous groups (according to FPDN, 2.1x more indigenous people are living with a disability). This indicates a large number of individuals with no access to help or support.
Intersectional disadvantage (when many systemic barriers accumulate – disability, race, sexual orientation, age, etc.) is a major issue and presents another challenge to autism families in indigenous communities. The intersection of disability and race, compounded with shame and fear, and an entrenched distrust of mainstream services, makes it difficult to engage and help these families, particularly in remote communities.
First Peoples Disability Network and Positive Partnerships have joined forces to break down these barriers and reach families through storytelling and informal get-togethers. By “walking backwards into the future” they are determined to take the learnings of the past to make a better future. They have engaged parents who have been there, to become mentors and positive examples, by sharing their story and the ways they have been helped by the partnership.
June and Lee presented a video of Jackie, the proud mum of Murray. She discusses her initial feelings about his diagnosis and how difficult it was to seek help in her community. She then talks through his progress, what she’s learned along the way and her new path, studying to become a learning support officer. Her story has already helped indigenous parents start to seek help for their kids and the hope is that many others will do the same.
While the numbers are stark, the strong and deadly partnership between these two organisations promises to improve outcomes for indigenous children on the autism spectrum.
I’m ashamed to admit that my awareness of the intersectional disavantage and the cultural perceptions of disability facing indigenous communities was poor prior to this presentation. I hope sharing this summary will open up the eyes of others and I wish FPDN and Positive Partnerships well in rolling this out to more indigneous communities across Australia.
I’ll share more summaries of the sessions I attended at APAC17 in future posts – stay tuned.