Using lived experience to challenge complex stigma

This is an adaptation of an old article I wrote on my LinkedIn in May 2017. As we continue to discuss the marriage equality ‘debate’ and our ongoing failure to come to terms with our Aboriginal history, the complex interplay of stigma, discrimination and mental health remains relevant. The only way to improve the mental health of everyone in Australia is to make sure that everyone has a voice, that we listen to the voices of those who are most marginalised – and act on them. I originally wrote this during recruitment for people with lived experience for a committee I was part of, and it was part of an ongoing struggle I have with myself when responding for advocacy opportunities – while I want to advocate, I also want to make sure that it’s not just people like me who always get chances to contribute: white, fluent in English, literate in health policy. How do we support organisations to actively reach out and engage new voices?

We’ve come a long way in reducing mental health stigma in Australia. I feel much more comfortable discussing my own experiences of mental ill-health in professional and personal settings than I did when I first arrived in Australia six years ago. That’s not to say that the problem of stigma and discrimination is solved – many people in the community still hold misconceived views about people with mental illness, especially low-prevalence disorders.

And stigma exists in the workforce too: at a recent conference I attended for mental health professionals, a worrying number of presenters talked about their studies of people experiencing mental ill-health compared to ‘normal people’ (btw the words ‘control group’ and ‘general population’ are both more descriptive and less stigmatising). But, thanks to the work of a great number of excellent organisations and people, I’m confident that mental health stigma is on the decline.

But, for many, stigma is complex. The stigma they face as a person experiencing mental illness is bound up with the stigma of their identity.

Racism, homophobia, transphobia and many forms of discrimination are all clear contributors to mental ill-health. Young LGBTI people are twice as likely to experience mental illness. And the suicide rate for young Aboriginal men is the worst in the world. These are not coincidences. These communities have faced historical trauma and ongoing discrimination. This week was the International Day Against Homophobia, Biphobia, Intersexism and Transphobia, and next week sees Reconciliation Action Week. These events are not just tokenistic celebrations; they provide a day for communities and allies to come together to celebrate their strength, and a focal point for ongoing education efforts to reduce stigma.

But as well as contributing to mental illness, stigma around mental health and issues of identity have a major impact on how people engage with mental health services. Stigma around mental health issues can prevent people from diverse backgrounds from discussing their problems. Fear that they will face discrimination and racism at the hands of services prevents people from reaching out. More than that, for many people of Aboriginal and culturally diverse backgrounds, the western biomedical health system can hold a fundamentally different understanding of how bodies and minds work. That’s why work to improve understandings of concepts such as social and emotional wellbeing in mainstream settings is so important.

I have long believed that understanding consumer voices is vital to improving access to and the quality of mental health services and systems. Philosophically, I think it’s important that services for us are not designed without us. However, when it comes to potentially stigmatised communities, hearing from diverse voices is especially important because these voices are so under-represented.

For services, this means thinking about the voices which are not currently heard, and reaching out to provide opportunities. But providing opportunities is often not enough. You need to think about how you actively support people to engage, because without active engagement, the barriers to participation can often be insurmountable. Work to ensure that your participation opportunities are culturally safe. Think about the language you use and the spaces you provide.

In mental health, stigma is not one-dimensional. It’s complex and needs complex solutions. But the best place to start is to ask the people who experience obstacles to quality mental health care, what those obstacles are and how they think they should be overcome.

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