Lived Experience Leadership

When it comes to mental health, a lot is being done to change how society deals with its different aspects.

One approach that is quickly gaining momentum is lived experience leadership. According to Lived experience is “personal knowledge about the world gained through direct, first-hand involvement in everyday events rather than through representations constructed by other people.” When it comes to matters mental health, lived experience can be defined as having a first hand experience of a mental health condition.

It’s good to note that, lived experience is different from experience. A person who has experience of working in mental health doesn’t necessarily mean that they have experienced mental health challenges. However, there is a possibility of an individual having work experience in mental health and having a lived experience with mental health issues.

Voices of persons with lived experience of mental health challenges are important in challenging stigma attached to mental health conditions, demystifying myths about mental health, mental health research and most importantly normalizing the conversations about mental health. A lived experience perspective offers a unique insight into the social, economic and human rights challenges faced by persons living with psycho-social disabilities. That is why contribution from people living with psycho-social disabilities can not be ignored when dealing with global mental health.

It is therefore vital for all stakeholders in mental health to intentionally involve lived experience voices in their work. Inclusion and active participation from the bottom up will ensure that decisions are made by people with lived experience for people with lived experience. The human rights approach puts emphasis on inclusivity not only to avoid human rights violations but to ensure that providers of mental health services have the principles at the core of service provision. The recent task force on mental health in Kenya had requested memoranda from people with lived experience. We have to appreciate the fact that a person with lived experience was part of the task force. We still have a long way to go but we can appreciate it is a step in the right direction.

Power imbalances and mistrust do exist between persons with psychosocial disabilities and those without. To address this we need to bring both teams to the table and engage in meaningful discussions on how to share power and rebuild the broken relationship. However, it is easier said than done. Does this warrant for the status quo to continue unchallenged? I believe no! We need to engage each other. The sooner the better.

Looking at mental health from a lived experience perspective will definitely give birth to diverse perspectives. Diversity will bring about growth and change. Mental health has been overlooked in so many ways and for so long. The diversity of lived experience leadership will spark the light that is needed to challenge the status quo in the mental health sphere.

Youth with lived experiences are now starting to voice out issues affecting them. A support group in Nakuru, Kenya dubbed PEPEA has started challenging stigma attached to mental health conditions by sharing their lived experiences. The support group also acts as a peer support system for the members. They are being supported by PDO Kenya, a mental health organisation that is run by persons with lived experience. The organisation offers the youth support in form of professional help, self care activities, and capacity building through various trainings. Apart from having lived experiences, PDO Kenya has made it mandatory for the youth to take WHO quality rights training. This has made sure that members appreciate the humans rights approach to mental health and recovery.

Yours Truly,

Mentally Unsilenced.

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