Lived experience of mental health: Benefit or hindrance?

Lived experience of poor mental health matters for representation, so why do some think otherwise? Michelle Jamieson explains…

This article on the website of theGIST (the Glasgow Insight into Science & Technology) has been written by Michelle Jamieson. It begins:

Lived experience matters.

Really if this was universally believed, this article would not need to expand on that statement. This is sadly not true. The well-known phrase ‘nothing about us without us’ originated in the disability rights community, as well as James Charlton’s 1998 book1, whose work rightly argued that people living with physical disabilities have been treated unfairly, stereotyped, and subsequently marginalised.

In recent years, the phrase has also come to mean something more for people living with poor mental health. It neatly embodies the radical belief that people with lived experience of poor mental health must be and are more than ‘worthy’ to be involved in every domain of mental health service improvement, including service delivery and implementation, training, governance, research and importantly, for representation. 

This kind of meaningful involvement is considered ethically imperative to help prevent patronising and exclusionary practices, policies, and actions. However, in a catch-22, it can also result in exploitation of the considerable expertise held by those with lived experience of poor mental health. Often called “experts by experience”, those with lived experience of poor mental health have had to navigate complex, patriarchal, and harmful health and welfare systems that often co-opt the experience of ‘recovery’2. As a result of this, many of us have developed ad hoc self-care strategies and dealt with regular stigma and discrimination still prevalent in society3 …”

You can read more from here.

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