The Value and Limitations of Lived Experience

At times I have been hired for my ‘lived experience’, either as a carer for people with mental health problems or as a disabled person myself. I have also worked in research teams with people who have other kinds of ‘lived experience’, such as parenting children under five or living with addiction. I am not particularly keen on the phrase ‘lived experience’, because as far as I can tell all human experience is lived experience. I prefer ‘experts by experience’.

However, I also think the concept is flawed. Being an expert by experience is not like being an expert in domestic plumbing, or millinery or research ethics. For a start, the categories provided for experts by experience are incredibly broad. ‘Disability’ is a huge category. I am Autistic and I live with fibromyalgia and asthma. That qualifies me as an expert by experience – but I am no expert in the experiences of Deaf people, or stroke survivors, or people with Tourette’s syndrome, or many, many others. ‘Addiction’ is another huge category, covering street and pharmaceutical drugs, alcohol, shopping, sex and so on. Someone who is addicted to alcohol will not be an expert in the experiences of someone who is addicted to heroin or gambling. I could give you equivalent examples for mental health carers, the parents of young children, and any other category of ‘expert by experience’ you care to name.

Also, I often observe – and have experienced – experts by experience being required to subordinate their experience-based expertise to expertise conferred in other ways, such as through education or employment, and/or to organisational constraints. I have heard of situations where research ethics committees discounted expertise based on experience (which was no fun at all for the researchers concerned). And I have other forms of expertise myself, developed through education and employment; my experience shows that these are valued more highly than my expertise by experience. I earn more with them, for one thing. This all leads me to understand that expertise by experience is worth less than other forms of expertise.

I should also acknowledge that I have witnessed several situations where third sector organisations passed over a capable and qualified candidate to recruit an employee with lived experience. This might look like organisations valuing expertise from lived experience more highly than other forms of expertise, but in each case the story did not end well. Recruitment is one thing, retention is quite another. Recruiting someone who is not able to do the job, and then not providing the adaptations and support they need to become able to do the job, is a costly form of box-ticking. And I don’t mean only financial costs; failed employment leads to enormous emotional and mental health costs too.

Another thing I have observed – and not only post-recruitment – is much less support and development being available for experts by experience than for other kinds of experts. I have mentioned payment, which may be in the form of a voucher, or travel expenses and a sandwich lunch; once in a while a reasonable amount of actual money. Sometimes there is a helpful booklet or a little bit of training. I have never seen any sign of experts by experience being permitted, let alone encouraged, to develop other forms of expertise.

This is just one example of the ‘us and them’ aspect of experts by experience. In the early 2000s I did a lot of work with Sure Start, a New Labour initiative involving partnership working in areas of deprivation to provide multi-agency one-stop-shop support for parents and children under the age of five. My role was to support partnerships in their early stages so I spent a lot of time sitting around tables with groups including nursery educators, midwives, health visitors, Home-Start managers, and other such professionals. They would talk about ‘the parents’, meaning the people who would be using the services once they were set up. It felt very much as though they were othering their potential service users. I would ask, ‘How many of the people round this table are parents?’ Inevitably some were; often most. Then I would facilitate a discussion about how the lived experience of the parent-professionals could inform the work of the partnership. This made some of the professionals uncomfortable at times. I’m not sorry.

As a researcher, part of my job is to separate and categorise information to help me find useful links and patterns. But this separation and categorising work is temporary, for the purpose of discovery. Separating and categorising people is inevitable, at least for people using English because of how the language works – but this always carries the potential for othering. In my lived experience, experts by experience are often on the receiving end. It is not a pleasant place to be, when you are allowed to be involved so far and no further, when others always have the final say.

Everyone is an expert on something, whether that is cleaning a house or conducting an orchestra, plastering a wall or piloting a battleship. I wish experience-based expertise was valued as highly as education-based or employment-based expertise. I think it has every bit as much value and I hope, one day, this will be fully recognised.

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