S33: KEYNOTE: If we value lived experience, why is disclosure still fraught, and what can we do about it?

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By September 5, 2019 No Comments

Authors: Louise Byrne

Year: 2019

Event: 2019 TheMHS Conference

Subject: If we value lived experience, why is disclosure still fraught, and what can we do about it?

Type of resource: Conference Presentations and Papers



Dr Louise Byrne is a researcher with deep knowledge of organisational issues relevant to ‘lived experience’ mental health employment. Louise’s work is informed by her own experiences of mental health diagnosis, service use and periods of healing.

Louise is currently employed as a Vice Chancellor’s Postdoctoral Fellow at RMIT University, in the School of Management. Louise was awarded a Fulbright Postdoctoral Scholarship in 2017 to conduct research on lived experience employment in the United States. During her Fulbright research, Louise was a visiting scholar within the Yale Program for Recovery and Community Health. Louise is currently leading the development of a Framework for Lived Experience Workforce Development, funded by the Queensland Mental Health Commission.

In recognition of her work in this area, Louise has received several industry and academic awards and been featured on respected national media, including Radio National ‘Life Matters’ and ABC’s ‘Q&A’.
Increasingly, mental health policy and plans for systems transformation highlight the valuable role of lived experience perspectives. However, despite attempts to challenge persistent prejudicial attitudes towards people with a lived experience, barriers to acceptance are still commonly found.

This presentation includes key findings from four studies in Australia and the United States. The studies sought perspectives of people employed in management positions, non-lived experience mental health roles, corporate roles and designated lived experience roles.

My research indicates the prevalence of barriers to the acceptance of lived experience within services. Some managers expressed concern that employing people in designated roles exposes them to stigma and poses risks to their future employment opportunities. Likewise some lived experience practitioners describe being so accustomed to prejudicial attitudes they have become de-sensitised, seeing professional defensiveness and avoidance from colleagues as a ‘normal’ part of their work experience.

Many people in non-designated mental health roles, including mental health professionals, also have a personal lived experience. However disclosure of these experiences is still relatively rare across the sector and can pose risks to the individual and their livelihood. Disturbingly, some mental health professionals describe colleagues dying by suicide because they were too afraid to seek help and risk having their lived experience known.

These clearly unacceptable conditions, further raise the question, how ‘safe’ and effective our mental health system can be for people accessing services, while negative attitudes about and towards people with a lived experience are still endemic?

The good news is, there’s much that can be done. Strategies to raise the perceived value of lived experience and facilitate a culture of safe disclosure will be discussed. I will also speculate on why resistance is still so persistent and touch on issues such as shame, self-doubt and fear of not belonging.

Ultimately we will consider what it is we can do, both individually and collectively, to challenge these barriers within ourselves and within our service system.

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