To HATE the phrase "lived experience"?

[ThisFluentBiscuit]

Pet peeve incoming:

By definition, experience is lived! You can hardly have an experience without living it, fgs! And what's the opposite of lived experience? An experience that you've had, yet haven't lived? It's complete nonsense. It's used to sound falsely clever when an argument is weak, like "In my personal experience." Well, of course your experience is personal! You would hardly say, "In my neighbour's experience, I find Florida too cold in December."

And it's officially wrong, because it's a tautology. Like "top-floor penthouse."

I don't know whether it's the innate stupidity of the phrase or the fact that it's a linguistic fad that annoys me the most.

"stamps off"

See, this is the problem
There is a huge range of professional expertise that goes well beyond what you dismiss as "doing a course". And lived experience us not necessarily "better".

I don't want my Granny to treat my cancer based on her lived experience of having had cancer. I want a professional . think a practitioner has a broader view of the range of presentations, possible trajectories and outcomes of the circumstances of their area of expertise, and this should be respected as well.

Yes we need to include lived experience voices, but at present the primacy of lived experience as an unquestionable source of truth is unhelpful. Someone with lived experience can only present their own experiences, they don't represent everyone with that condition or circumstance.

Example: my lived experience of mounjaro is that it was horrific and caused dreadful exacerbation in anxiety with constant panic attacks. It is reasonable to represent that and it is annoying that many professional dismiss that as the guidelines don't (yet) recognize this side effect. However it isn't reasonable for me to therefore declare that mounjaro should be banned because it causes panic attacks. In most people, it doesn't. I don't represent most people's experiences, but it is my lived experience. It should be acknowledged, but not necessarily become the foundation of policy.

Do you not get that an individual only ever has their own experience which they experience through their own understanding or misunderstanding, their own biases and background? They know nothing of anyone else’s experience. At best what they offer is personal anecdote and that is no basis for policy making. A researcher would seek to gather the views of many people, including those who might struggle to get their views heard.

Most of the support sector has been taken over by activists pushing the views of a few very vocal political groups. Just look at how many wear rainbow lanyards and misrepresent the law on women’s rights.

Im pretty sure Sara Payne would have a greater depth of understanding and knowledge of child abduction and murder having experienced her own child's abduction and murder, rather than an expert.

No, the objections to it come from people like you who think you've been top trumped because you see everything through a power dynamic. You can't stand to be told that someone else's experiences make their opinions more worth listening to, or more valuable for the specific purpose.

Professional and second-hand experience can also be valuable, and they would absolutely "top trump" the opinions of someone with no experience in the field at all. Obviously.

This thread is really eye-opening when it comes to seeing how many people get disproportionately enraged over neologisms, even when they describe simple (and very much not new!) concepts. See also "cancel culture" - people have been being shamed out of public life for centuries when their behaviour is deemed over the line for that era, and yet we're supposed to think cancel culture is a brand new thing?

Lived experience is not incorrect English, it’s an evolution of English to create a new term to describe a particular subset of experience.

You assume everyone knows that “experience of multiple births” for a midwife means “experience of treating” - but a midwife who has had twins herself has lived and professional experience- and that can be very useful in some circumstances. Just because you’ve never needed it, doesn’t mean a term to differentiate isn’t needed.

sometimes we need different terms to express different situations/concepts, “lived experience” is a very short way of getting across a different concept of experience, which became a term that is now used because it was needed in many situations.

If you don’t think lived experience should matter more than other types of experience, that’s a different argument- refusing to name a concept doesn’t win that battle though.

It is not a non-issue, because language is important. And people should know that every time they use a tautology like "lived experience" there might be someone listening who thinks they sound self-important and virtue-signalling - like their "lived experience" is so much higher than everyone else's plain old experience. Or they might just think that the speaker is a bit dim if they think that experience and lived experience are different. And if that listener is a job interviewer or a date, that matters.

What @Cunningfungus said is irrelevant because we are not discussing the phrase "lived experience" in academic disciplines, we are discussing its preponderance in general usage, which is highly irritating because it's a tautology and those are plain wrong. That's what makes them tautologies.

And I don't believe there's not a better way to express the concept in its academic sense, anyway. Unless the relevant areas of academia are certain made-up subjects with made-up vocab to match, and that's a whole different thread...

With a virtual reality headset.

IME, direct experience is very helpful in setting parameters, guiding research/policy and in researching what service is required. But can be less helpful than professional experience in identifying the structural causes and solutions.

That’s because direct experience is only of one case (your own) whereas professional experience is of many cases over many years - what causes them and what solves the majority the best. Plus, what other factors are at play that affect that service: constant changes, lack of resource etc.

Even research into service design is better if it includes the service providers (i.e. professionals) and should draw on a large representative sample of people with direct experience. Because, for example, a single, retired, affluent White man is unlikely to have the same direct experience (or needs) as a Black lone mother of three kids who works two jobs. If you only consulted the man, you may develop a service that doesn’t work for the woman.

As someone who has worked in teams that work with vulnerable populations, the addition of a team member with lived experience is invaluable.

Pulp’s song ‘Common People’ is a good example of the difference between experience vs lived experienced.
’ I wanna live like common people ‘ etc - you are experience living like a common person - but someone’s LIVED EXPERIENCE of being common is going to be entirely different.

surely OP you can see the distinction…

I think lived experience signifies an emotional experience. Its something that's meaningful to the individual on a deep and personal level. Its something that they cannot step outside of so it becomes part of who they are. Its very different from academic or professional experience where its possible to be knowledgeable about a subject without being able to resonate with how it feels to go through it.

I think the phrase is used a lot as a put down by people who think lived experience trumps everything else. It also comes with hefty assumptions about other people’s lives and experiences.

I have lived experience of DV but that doesn’t mean I know anything about anyone else’s experience of it and I know far less than professionals who deal with DV victims. It is also not something I ever discuss with anyone.

You’re right OP. Someone, somewhere has decided it was a good idea to use this phrase in health and social care settings when it really wasn’t needed. And it’s seeping into normal language.

Some people have experience of homelessness. e.g. they were actually homeless.

You shouldn’t need to say lived experience If all other descriptions are appropriately qualified e.g. someone who worked for a homelessness charity for 20 years.

She has professional experience in supporting homeless people. She does not have experience of homelessness FFS.

I think you didn't read my post properly. You need everybody's voices. It's incredibly patronizing to create services for people without speaking to those people that actually use the service. Obviously you don't just speak to one or two but have in-depth conversations with many.

It's naff all to do with lanyards. I'm not convinced you know much about the service industry apart from getting frothy on Twitter.

Academics and researchers can play an important role but that doesn't reduce the need of listening to people with lived experience alongside with everyone else I mentioned previously.

Yes, and some health professionals will have both professional and lived experience of a condition. In certain clinics, it is important to specify which.

Actually @ThisFluentBiscuit - if your issue is the term not the concept - can you come up with a way of describing the subset of the people who have the dreaded “lived experience” of a condition/situation that clearly differentiates them from others with experience that is professional, or those with personal experience of a family member /friend having that condition/being in that situation, and those who have studied a situation but not for hands on involved with it?

”lived” “professional” “academic” “personal” can all be added to the word “experience” and those working in the fields understand when someone says they have experience, it’s quickly clear what sort of experience they have. What would be better?

(Or do you think it’s better to not have a term, to have to just say “experience” and assume everyone guesses correctly what you mean by that or write out whole sentences detailing in what way, because while less efficient- that would mean you don’t have to face language evolving in your adulthood .)

If you've read something in a book or experienced it second hand. For example, I may have experienced racism via my children experiencing it, without myself having experienced it (because I'm white).

I have experience of homelessness because I worked in the homeless sector for ten years. It doesn't mean I have lived experience. It means different things.

What media do you 'copy edit' for?
For someone who seems so invested in using the correct terminology, you remain stubborn in the face of the facts. As so many of us have pointed out, with supporting evidence, there IS a difference between the two phrases, and lived experience is not a new term or fad.
You are wrong.
And full disclosure - I was a journalist (medical and acdemic)

Indeed.

This is an excellent point - I have lived experience of depression & using excel. This tells you nothing about the severity or recency of my depression or my skills with excel. It's more useful to say 'I had mild depression in my teens and it got better and hasn't been a problem since' and 'I have used excel for years and can use formulas but don't know what a pivot table is'. The key is the detail - someone with lived experience of poverty could have grown up with plenty of food, clothes and a warm loving home but no holidays, new tech or car - OR have grown up in filthy unsafe temporary council accommodation with inadequate nutrition. The devil is in the details.

IMHO the best workplaces/research/policy have people with direct experience actually doing the job, not have them there as a tokenistic consultant.

We all saw how Downing Street made mistakes during the pandemic because staff weren’t diverse in their direct experience. So, it probably didn’t occur to them there were families stuck sharing beds in temporary accommodation or overcrowded flats, having to go out on public transport to their jobs in supermarkets or cleaning hospitals.

FGS

The phrasing has been amazingly helpful in making sure that people with lived experience are actively involved in guidelines about the care of people with specific conditions.

In the past, mainly professionals with knowledge and experience of conditions would be involved. Being specific about professional experience versus lived experience has helped to ensure that the importance of each group of people is recognised and included.

If we scrap this way of describing groups in healthcare then we risk going backwards in ensuring all experiences and their differences are recognised and used in developing guidelines, etc.

I understand that you don’t recognise professional experience so far in this thread. This is experience. I have spent over 20 years experiencing the condition I work within from a professional point of view. This is different to my husband who has no experience (as he works in a totally different field). The people I work with have lived experience so understand the daily realities of living with the condition but not the practicalities of delivering the care. We have different experiences that all need to be recognised in order to describe best care for a guideline.

Why? She might now have more knowledge having listened to other’s and researched the area but just having experienced her own child being abducted and murdered would only give her knowledge of what is was like to have her child abducted and murdered and nothing about how typical or otherwise her experience was, the motivation of those involved and how best to manage dangerous men in the community, what resources are needed to find those abducted, policing improvements that might be necessary, the general success of media appeals, the experience of parents who have been unable to garner media attention, the experience of children who have been abducted, the experience of murderers….