Type
Essay
Category
PEN essay

Restorying care

As a writer, I find opportunities to tell my story. Us artistic mob share our stories to audiences through poetry, art, music, theatre and dance; through this, we celebrate who we are and honour those who have come before us.

One space (there are many) where we consistently struggle to feel heard or tell our story is in the health system. A space traditionally for healing, ‘health’ in Australia today reflects the colonial patriarchal society brought on Aboriginal land by the whitefellas: classist, sexist, racist, violent, sterile, impersonal. Here, ‘health’ does not equal healing in Aboriginal way.

 

we tell our stories

often we leave the doctor’s room or

medical centre

not understood

not listened to

 

The many mob doing incredible work in health tell us the system is broken despite pockets of positivity and possibility. As my Country woman Dr Chelsea Bond, Associate Professor at UQ Poche Centre for Indigenous Health, writes, ‘While building an Indigenous health workforce is vital to improving health outcomes for our mob, we cannot talk about the health workforce without talking about power and how it operates in the colony.’

Here, I refer to the words of blackfellas working in this space as well as reflecting experiences yarning with mob who live in the big three East Coast cities. I am an able-bodied queer Mununjali blackfella living in the city. Despite the privilege of living where there is choice and access, I have always felt invisible barriers to accessing medical services.

Health professionals have perceived ideas about our care and our narrative. They come with a whole bunch of assumptions about our identity. These will be framed in the questions they ask and the answers they assume, and will inform the direction they take our care in, controlling the story of our physical and mental health. In these spaces, we are the subject, the object. We will be taken through colonial processes that may not even stop to ask us what our opinion is. Voices die here. We’ve seen our relatives brutalised by the system, denied their humanity, denied their health justice. We hope better for these living generations, but we have already seen hope and despair in their eyes.

Colleen Lavelle, a Wakka Wakka mother of four with an inoperable brain tumour, writes on Black media site IndigenousX:

Death by racism should be a category on death certificates, because the racism in hospitals is hindering the recovery of many Aboriginal and Torres Strait Islander people. Spend some time as a patient in a hospital and you soon find out that the medical profession is full of bigots and people who might not consider themselves racist, but have preconceived ideas on race and hold outdated beliefs in racial stereotypes.

Across all institutions, our mob are discriminated against and receive unjust treatment. ‘Death by racism’: since 2008, half of Indigenous women and girls who have died in custody did not receive appropriate medical care. ‘Death by racism’: since 2008, a third of Indigenous men and boys who have died in custody did not receive appropriate medical care. One death is too many.

Colleen also blogs as ‘proudblacksista’, sharing tips on how to survive the financial pressure of medical bills, as well as offering a platform for others with cancer to share their stories. (There is a GoFundMe campaign to raise money for her treatment.)

Named after Pitjantjatjara woman Dr Lowitja O’Donoghue, who has devoted her working life to improving the health and welfare of her people, the Lowitja Institute in Melbourne is a national health-research institute run by Aboriginal and Torres Strait Islanders. In the Lowitja Institute’s ‘Deficit discourse and Indigenous health: How narrative framings of Aboriginal and Torres Strait Islander people are reproduced in policy’, the authors William Fogarty, Hannah Bulloch, Siobhan McDonnell and Michael Davis from the Australian National University discuss how the Closing the Gap policy framework uses victimblaming and deficit discourse, a disempowering practice that represents people in terms of deficiencies and failures. Indigenous people are required to – statistically speaking – assimilate into a Western worldview. These neocolonial measures for success create a ‘fictional Aboriginal or Torres Strait Islander person’ who is ‘removed from kinship or social settings’. The fictional average Aboriginal or Torres Strait Islander person cannot reflect the diversity of our people nor the different wellbeing values we have for ourselves and our families and communities.

I experience depression, anxiety and suicidality, and live with the pain of seeing loved ones go through the same. I have been a patient of mainstream, queer and Aboriginal medical services, each with its own positives and negatives. I’m all too aware of a general lack of cultural competence and responsiveness in mainstream care. I believe in trauma-informed care with a holistic view of who we are as peoples. When seeking help in the mainstream system, I have been turned away by doctors. They didn’t want to hear my story. Some doctors blame the patient for their distress, and play into the stigma of mental illness when patients ask for a mental health care plan: ‘You don’t want this on your record’, etc.

This country is a hotbed for ignorance. Harmful views are held not only by white health professionals, but also by non-Indigenous people of colour. Completely perplexed about our diverse identities, they force us to deal with their bewilderment and confusion. When asked persistent questions like ‘I have other patients who say they are Aboriginal but don’t look it, can you explain to me why?’ I feel on unsteady ground.

When asked about our medical histories, we have to ask ourselves: how do we translate our histories and genealogies for/to you? How will you transcribe our histories and genealogies, and how will you use this in your narrative? Health records are primarily in text on computers – they can’t hold our full true story.

I have had overly helpful doctors, too. When I told one doctor I was Aboriginal, she said, excitedly, ‘We can do all of these tests.’ Although I appreciated a thorough analysis, the over-ordering and over-frequency of tests made me feel like an object – like a specimen. I wasn’t sure if they were the right tests for me, either – they didn’t fit me as an individual and what was going on for me. They felt like tests for the sake of tests. Invasive – a subject performing tests for data.

Data is used to build, and claim, story. Recently, the term ‘data sovereignty’ has been used to describe mob’s sovereign right to their own data: all data should be subject to the laws and governance structures within the Indigenous Nation where it is collected. This data should be accessible to the community. Unfortunately, we are a long way from that.

Currently, as Trawlwoolway scholar Maggie Walter and Maori scholar Tahu Kukutai say in ‘Recognition and indigenizing official statistics: Reflections from Aotearoa New Zealand and Australia’, non-Indigenous majorities produce and control this statistical data, and the results reflect the ‘limited and/or erroneous understanding of who we are’ rather than our own perspectives.

The Lowitja Insitute’s An Evaluation Framework to Improve Aboriginal and Torres Strait Islander Health stresses that:

Ideally, Aboriginal and Torres Strait Islander communities should host repositories for their own data. However, considerable capacity building would be required to make this possible. In the interim, hosting data with a third-party organisation should be considered. Any such arrangement would have to respect data sovereignty, as well as security.

In Aotearoa, a Maori data-sovereignty network called Te Mana Raraunga created a charter: the first ideal recognised data as ‘living tāonga’. With data sovereignty, we can own our stories and free our spirits from the narrative constraints that have been placed on us and our ancestors.

Last November, Gamilaroi man Luke Pearson wrote a piece for the site he founded, IndigenousX, that brought together the concerns of many about the current Australian Bureau of Statistics–governed health survey. His title posed the question: ‘Is the National Indigenous Health Survey ethical?’ Participants for the survey are randomly identified through a doorknock and told to invite the ABS representative in to perform hearing tests and take height, weight and waist measurements. The survey’s motto, promoted by high-profile Indigenous ambassadors, is ‘Everyone’s story matters’. The survey ran till March 2019, with results expected in late 2019, and promises to create a national picture of Aboriginal and Torres Strait Islander health. Data will be used by government to make decisions on the future of health policy. The catch? Consent. Participants are told that failure to comply in the research can result in fines of $210 per day. For blackfellas who grew up under extremely oppressive conditions, this is just another insult to freedom and dehumanising practice.

 

nervously, my doctor looked up

from her screen of questions

and asked if I was part of the Stolen Generation.

when I said no

she didn’t really know what to say.

 

Comparative to mainstream health services, Aboriginal spaces provide a lot of scope for the patient to tell their story. The National Aboriginal Community Controlled Health Organisation (NACCHO) defines Aboriginal health as ‘not just the physical well-being of an individual but … the social, emotional and cultural well-being of the whole Community in which each individual is able to achieve their full potential as a human being thereby bringing about the total well-being of their Community. It is a whole of life view and includes the cyclical concept of life-death-life.’

 

everyone looks more Indigenous in footy jerseys

most of the medical professionals are whitefella ones

 

the waiting rooms are storied places

mob from all over

the ability to access

different services under the one roof

black faces at reception

and free travel

 

women’s privacy compromised

underfunded, overcrowded

we wait

we wait

we become waiting lists

 

In between appointments, I stepped out of the Aboriginal medical centre to the regional art gallery next door. I was surprised to find, after speaking to the staff, that they had no Indigenous art on display or programs involving Indigenous artists and community.

I had gone from one building telling Aboriginal stories to one that did not, and it was disorientating. Mum and I butted in on the free art class taking place at the back of the gallery, and I drew out the aches of the appointments and processes and administration. As I described my experiences, Mum talked to me about autonomy. She talked about my grandmother, about ‘that generation that were taught to believe in rules, and the doctors, the authorities knew best. That didn’t speak up. That were made to be silent.’

‘Don’t be like that,’ she said. ‘You have to speak up.’

The link between storytelling and health can never be under-emphasised. What should we expect when we go to a place to get well? Full understanding. Responsible listening. Enhancing of our strengths. Drawing on culture and creativity and our family’s values. And we should never feel alone. Never.

Queer health services – often white by design – sit awkwardly next to heteronormative Aboriginal health services. There is the potential between these two to have the magical, culturally informed, queer AF care that we don’t have yet in this country.

Dameyon Bonson, a queer Mangarayi and Torres Strait Islander man based in the Kimberley, writes, ‘Indigenous people are not homogenous. But if you looked at our health plans, one would assume we all in fact are, or at the very least we are all straight, heterosexual, and that us Indigenous LGBQTI mob simply do not exist.’ Dameyon is the founder of Black Rainbow Living Well, and has expertise in Indigenous suicide prevention and strategising male health engagement.

Dameyon says Aboriginal and Torres Strait Islander health ‘lacks the discussion and framework for cultural competence, cultural appropriateness or cultural responsiveness specific [to] Indigenous LGBQTI needs’. This exclusion causes anxiety and depression in our LGBQTI mob, and adds to the challenges and complexities we face in our lives.

 

we live our lives in

patience, hoping we can

wait out all of it.

what happens when

our name is called?

 

A First Nations Canadian friend recently brought my attention to an essay by queer Cree writer Billy-Ray Belcourt called ‘The Body Remembers when the World Broke Open’. The first lines of this essay gave me shivers.

I am trying to figure out how to be in this world without wanting it, and perhaps this is what it is to be Indigenous. To be Indigenous is also to be hurt on the way out, if the ‘way out’ is crowded by the past’s razor sharp edges.

For me, living with hurt is difficult and requires daily resourcefulness. Long-term planning doesn’t feel possible.

For mob seeking immediate support when experiencing suicidal thoughts, there are limited culturally safe options. There is no Indigenous suicide-prevention line or web chat – like the youth-specific (headspace), queer-specific (QLife), etc. counterparts – even though mob are most at risk.

Quandamooka woman Leilani Darwin, the winner of the Suicide Prevention Australia 2016 Excellence in Aboriginal and Torres Strait Islander award, writes at the Black Dog Institute that ‘compared to non-Indigenous Australians, Aboriginal and Torres Strait Islander youth aged 15–24 are four times more likely to take their own lives, and those aged 25–34 have almost three times the risk of suicide’.

Trauma creates trauma. High rates of Aboriginal and Torres Strait Islander suicide and even higher Aboriginal and Torres Strait Islander lesbian, gay, bisexual, trans, intersex, queer, brotherboy and sistergirl suicide rates are our current reality.

Leiliani founded Dulili Voices, a consultancy that focuses on incorporating the lived experience of community members into service delivery in a culturally competent manner. She says the reality behind most of the policies and frameworks that impact Indigenous people’s lives is ‘do it and consult with communities later’.

When people’s health narratives are not heard, they are extremely affected. They blame themselves for their pain. They hurt deep inside. They live a life half-lived. Poor health gets in the way of other things they may have achieved. The focus is on surviving, not thriving. They die young. Whole families and communities suffer.

Arts and wellbeing are so entwined, and the wider arts industry should take a holistic view on Indigenous storytelling. We are people living with the past-present-future inside of us. Our bodies remember. They remember colonial violence and silence, but they also remember the ways in which we lived lives with purpose, compassion and balance. They remember swimming in well-kept waterways, they remember emu oil on skin, they remember yam and bay bug and bunya nut, they remember language, dances, music, song.

When we tell our stories, we are baulking stereotypes and saying, ‘I am not your fictional Aboriginal or Torres Strait Islander person– I am real.’ When we tell our health narratives, we are healing ourselves and each other.

 

 

 

Overland is a not-for-profit magazine with a proud history of supporting writers, and publishing ideas and voices often excluded from other places.

If you like this piece, or support Overland’s work in general, please subscribe or donate.

Ellen van Neerven is a Mununjali Yugambeh person from south-east Queensland and the author of two books, Heat and Light (UQP, 2014) and Comfort Food (UQP, 2016).

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