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Keeping our loved ones alive: the compounding effects of racism and exclusion on mental health care

Introduction by Croakey: Seeking care and finding harm, feeling unsafe in the mental health system, falling into despair that much needed help will not be forthcoming: these are some of the lived experiences of the people who have written for our ongoing Speaking Our Minds series, and their loved ones.

The post below, from Quandamooka woman Leilani Darwin, is no exception. But for Leilani and her daughter, the failings of the mental health system have cut even deeper, with an overlay of racism and exclusion.

As someone whose work involves educating mainstream health services about culturally informed practice, Darwin knows things have to change. She calls again here for leadership, solidarity and action.

**Readers are warned that this post contains references to suicide**


Leilani Darwin writes:

When you are somebody who happens to work nationally across both the mental health and suicide prevention sectors you would hope that finding help would be possible. What if I told you that it is, in fact, the complete opposite?

Despite my knowledge and connections, my own experience with seeking help has been far from a positive process. In fact, it has been a damaging, frustrating, painful space that has left me and my loved one completely broken by the system.

Why is this of relevance? Quite frankly because, if these are my experiences, then it completely overwhelms me to imagine what it is like for everyday Australians, and what it is like for other First Nations People, who have additional challenges and barriers to overcome.

Racism and exclusion in healthcare are real

You see, the reality is that we do experience racism, and we are judged and treated differently to others in the healthcare system. These are both my personal experiences, and the experiences that others from across the country have bravely shared with me,  backed by research findings from well-established authors.

Earlier this year, following a change in our nation’s leadership, I wrote a piece as part of the CEO update for Mental Health Australia. In that update I reflected that We (the First Nations People of Australia) have seen many things progress positively for our people.

This includes progress towards constitutional reform and recognition, removal of mandated cashless debit cards, forecasted improvements in access to affordable childcare for our young people, and many other positive reform activities.

The addition of Social and Emotional Wellbeing to the Close the Gap Strategy will provide a clear pathway to accountability of how we address and respond to mental distress and our service/support pathways.

However, exclusion still exists across the system.

For decades we have seen non-Indigenous service providers continue to be funded to provide mental health and suicide prevention supports and programs, often with the clear exclusion of self-determined and culturally safe and appropriate responses.

In both my professional and personal lives, I’ve experienced many conversations that have not just had a clear power imbalance, but have also embodied a very paternalistic, arrogant approach. Ultimately, the lack of cultural pathways and considerations of both safety and treatment options, remains in a desperate state of chaos.

The human impacts of systemic failure

In recent times I’ve been supporting my teenage daughter, and I can recall key moments when the systemic failings reflected in our experiences broke her.

Early on, her encounter with a doctor in the emergency department saw her in tears, unwilling to continue engaging and being shamed for her experiences and expressions.

I also felt exclusion and shame when I was questioned about my ability to keep my daughter safe, after I queried the lack of response or support for someone who was clearly suicidal and wanted to die, yet was sent home with the full responsibility on her family to keep her alive and safe.

During the times of hospitalisations and external support I was not once offered support for my own mental health and wellbeing despite being clearly distressed, and at a loss as to what I could do to keep her safe.

When a young person who has yet to be diagnosed mental illness, trauma and suicidality is told on several occasions that certain actions and supports will be provided, and then those things are not forthcoming, it damages any ongoing engagement.

And at other times, when that young person seeks help from a phone service, only to be hung up on when they are hyperventilating and unable to respond, this results in a genuine belief that help seeking will be met by no help, and that there is no hope of ever getting the right help and support, or of things getting better.

Compounding impacts

These experiences are not uncommon, but they have compounding impacts on Indigenous peoples. Some non-Indigenous people are quick to say that happens to everyone. However, in those statements there is an explicit non-valuing of how and why as First Nations people our experiences are different.

For example, when you discover your child has had a suicide attempt and a severe allergic reaction, you weigh everything up and know that it’s quicker for you to drive them to the emergency department than to call an ambulance.

Upon arrival in a packed waiting room, your daughter is directed to sit on the weight determining chair, and almost falls to the ground. The staff’s response is to berate and criticise you for not calling emergency services, who could have administered early healthcare interventions.

I’m not saying that I don’t understand this perspective because I know how overworked and under resourced our hospital and health systems are. What I’m saying is that not only was it shameful for me, but that when I looked down and saw the Aboriginal designed shirt I was wearing, it hit differently.

It also wasn’t helpful that time was being wasted to school me on what I should have done, while my child was about to pass out in the emergency waiting room.

The lack of empathy shown to my daughter and I continued, and I also observed another Aboriginal person who had clearly had an attempt being spoken down to with such an air of disdain and inconvenience that it took everything in me not to speak up on their behalf – but you see that wasn’t my role, nor was it going to address the underlying issues, or help my daughter to receive appropriate care.

With these examples being only a few of the many I and others have experienced, it’s an important time for us all to reflect on what is that we can do to make the system and services better so that others don’t have to have similar experiences.

Building lived experiences into mental health reform

During COVID our communities brought to light the struggles and challenges with mental illness and the stigma around accessing support. We are yet to see or understand what the true impacts have been and the ongoing effects of this global pandemic.

I’m asking for us all to come together to ensure that the lived and living experiences of everyone are elevated and embedded not just in future responses, but also in ensuring that all aspects of mental health reform, policies and practices are built on these experiences.

We need Federal Health Minister Mark Butler and Shadow Minister Emma McBride to commit to working with us and walking alongside us.

For this is one thing that I am certain of: if we don’t immediately address the barriers, challenges and lack of culturally led and appropriate systems responses and pathways, then our future generations will continue to be negatively impacted.

The lack of support and understanding is further exacerbated by our experiences of powerlessness and injustice, in ultimately just tirelessly working to keep our loved ones alive. I can’t and won’t stand by with idle hands and mind when we know the solutions to address the barriers and challenges.

*A Quandamooka woman living in Brisbane, Leilani Darwin is the CEO and Founder of First Nations Co. She is well known within the sector for her work and leadership in Suicide Prevention and Mental Health, and is a powerful advocate for Aboriginal and Torres Strait Islander led, culturally informed practices within mainstream services. Her work has been built from her own lived experience of losing many loved ones to suicide, and her own mental ill health. At ten years of age she had already experienced complex trauma including living with a mum who suffered from mental illness, regularly self harmed and ultimately died by suicide. A survivor of several suicide attempts, living with depression, anxiety and suicidality does at times pose challenges to Leilani. However, it is also one of the main motivators for her to get up, show up and stand up for her people so that they don’t have to experience what her and her family have gone through.

Seeking help

Lifeline 13 11 14 www.lifeline.org.au

Suicide Call Back Service 1300 659 467 www.suicidecallbackservice.org.au

beyondblue 1300 224 636 www.beyondblue.org.au

13Yarn: 13 92 76  13yarn.org.au

Kids Helpline 1800 551 800 kidshelpline.com.au

QLife: 1800 184 527 https://qlife.org.au/

Check-In (VMIAC, Victoria): 1800 845 109 https://www.vmiac.org.au/check-in/

Lived Experience Telephone Line Service: 1800 013 755   https://www.linkstowellbeing.org.au/


Acknowledgements

The #SpeakingOurMinds series of articles was conceived and organised by mental health and human rights advocate Simon Katterl and is edited by Dr Ruth Armstrong.

It is published to coincide with Mental Health Week 2022 (October 8-15) as a vehicle to privilege the voices of lived experience.

Bookmark this link to follow the series.

The series is supported by Mental Health Carers Australia, Simon Katterl Consulting, Tandem, First Nations Co, and Mind Australia. The supporters respect the independence of the authors and the editors.

On Twitter, follow #SpeakingOurMinds.

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