To think ‘lived experience’ doesn’t make you automatically right?

Academic knowledge is a bit moot too, once you delve into it.

@TinyTempest - for me from an academic pov it’s more than personal experience - it’s a way of amplifying the voice of the marginalised, centring their experience and working collaboratively to resolve issues.

I think it’s used incorrectly in day to day life when experience/personal experience would be more appropriate. Lived experience is a research term which can be used to help theme ideas together during analysis. Does t help that there isn’t an agreed definition of the concept of lived experience.

I dislike the way its presented as a "gotcha" in any debate as if it had equal validity to actual data. It merits consideration but it is not scientific.

I think this is a really important point. In my job I work with academics and also with policymakers. Sometimes conversations also include people with ‘lived experience’ of a particular policy area, so a hospital patient or a carer for example.

I always think it’s a tricky balance for policymakers to manage. They have to be fully respectful and 100% appear to consider the lived experience angle in policy but this can be easier said then done. And ultimately how do you weigh up lived experience v academic research & evidence?

There’s also the issue of whose lived experience is being heard. For example you can have a couple of very vocal patients with strong views on aspects of their hospital care. But it doesn’t necessarily mean their views represent the majority of patients.

So personal experience then?

No. I have experience of the welfare system through my work, but it is theoretical/policy/applied knowledge. I can tell you the why’s and therefore’s of benefit rules and why they were introduced/what the intended consequences are etc.

I don’t have the lived experience of receiving/surviving on benefits and the negative impacts that has on individuals and their children/family.

There is a huge difference that academics and policymakers can learn from

I have no issue with the phrase.

I think it's important in some contexts. I work in a field related to the pharmaceutical industry and there's an increasing emphasis on patient voice within R&D. Partly it's just respectful, but also the lived experience can be vital for research direction. For example, for years research in a particular autoimmune condition focused on treating pain, because medics and researchers assumed this was the most debilitating part of the condition. When patients were finally consulted, the majority said the worst element was fatigue, so the research had been targeting the wrong thing.

On the other hand, there is some evidence that the wider patient population living with any given condition don't necessarily feel represented by the patient experts (as in the case of ASD as mentioned by a previous poster, but also in other conditions), so it's important to remember that lived experience can come with substantial biases.

Yanbu. I work in the charity sector and grant-givers often seek to prioritise organisations led by people with lived experience. Which is lovely in theory but unsurprisingly there are not many survivors of SA/Muslim women leaving arranged marriages/people with experience of working in the greyhound racing industry/Rohingya people leading UK charities. I’m all for real and significant experience etc etc but I don’t know that this is it.

And as an autistic woman I have rarely found an autistic spokesthing that I feel represents my experience.

It is attention seeking!

Just because you have had a baby doesn't make you a midwife and having cancer doesn't make you an oncologist

Agree. I dislike the way its presented as a "gotcha" in any debate as if it had equal validity to actual data. It merits consideration but it is not scientific.

For example someone comes on to talk about how their child was unwell after taking a particular vaccine, other people tell them that it's highly likely to have been a coincidence as opposed to evidence that said vaccine is actually highly dangerous and there's a conspiracy to cover this up.

Then people pipe up to say the OP's "lived experience" should not be questioned.

The OP in this case is entitled to respect and compassion (and to respectfully have it explained that while her concerns are understandable, her hypothesis is wrong) but the facts are the facts.

Someone might have said this already but it is used to distinguish between professional (or other) and lived experience. So I have lots of experience of certain mental health issues in a work capacity but someone with lived experience brings a different kind of experience. Expert by experience is the new term.

I think you need both expertise through experience and professional expertise to create the best service and outcomes. It’s instead of calling people ‘patients’ or ‘service users’ when you are working collaboratively with people. It sets a tone of respect and that there isn’t an ‘us’ and ‘them’.

Essentially. I think it was coined to distinguish from those with professional/academic experience of a topic and who were making decisions about the people with first hand "lived" experience of the topic.

See also "expert by experience".

Which is even worse. If you've experienced trauma then at best you are only an expert in your own experience and will likely have major blindspots when trying to advise anyone else.

I agree that it's a problem when it's used to shut down the conversation.

There is also an issue with who is speaking from this lived experience. Often the sort of people who end up sharing their experiences publicly - and even those who participate anonymously in lived experience research - are not representative of all of those with experience (for example I'm interested in how autistic lived experience voices are disproportionately those of very articulate autistic people rather than those who can hardly communicate and / or have learning disabilities too). Doesn't invalidate any of the voices but raises questions about how well any one person can speak on behalf of others, no matter how empathetic and knowledgeable they might be.

I don't think too big a bashlash against it is a good idea either though. Until pretty recently, almost all academic knowledge about things like mental health and neurodivergence was constructed by people without life experience and often with contempt for the views of those they were researching. Decades of ineffective and inhumane 'treatments' were the result. 'Shut up and take what we offer you / do what you're told because to challenge it just proves you're mad / dangerous / stupid' was the result.

Not easy to find a good balance but worth trying, I think.

Yeah, agree with this.

Isn't it just a wanky way of saying 'personal experience'? That's how I've slways understood it.

I agree it doesn't make someone automatically right. Being supported by someone with a lived experience can be really beneficial though. Places like carers groups, mental health groups, groups for families of addicts, families of disabled children etc. People can feel a lot more comfortable and feel that they can get more understanding and better advice from someone who has been in a similar position.

I have a disabled child, prior to having my DC I supported families with children with disabilities. I thought from that experience I had a good understanding of what parenting a disabled child entailed. I now know that I didn't have a clue how difficult it was.

How much dead experience can a person have?

Not even that. You can misjudge things and be mistaken.

Is this right up there with having attended the university of life? 🤢

Of course you are right. You can give a good account of what happened to you but that doesn't mean you should be leading policy on that topic.

Yeah…. As opposed my ‘unlived’ experience (which presumably I didn’t experience) 😂