04/09/2026
Which lived experience voices get heard?
In the UK, there are prominent lived experience voices fiercely critical of the construct of borderline personality disorder — including Dr Jay Watts , Recovery in the Bin and Survivors Against PD.
Those perspectives are also present within BIGSPD. It isn’t a critical organisation, but its lived experience leadership includes people who question the validity, utility and ethics of telling someone their personality is disordered.
When I look internationally, I struggle to find that same voice.
iSSPD, ESSPD │ European Society for the Study of Personality Disorders and organisations such as Emotions Matter, Inc. , Project Air and the BPD Alliance | Borderline Personality Disorder seem, from what I can see, to broadly accept the BPD/personality disorder construct.
Perhaps I’m simply not seeing the critical voices, but it makes me wonder about which lived experiences get heard.
Flinders University in Australia, for example, did excellent work documenting the extraordinary structural stigma and disadvantage associated with BPD. Yet none of the recommendations suggested that stopping using the diagnosis might be one response to that harm.
I’ve also heard from people outside the UK who say that openly questioning the construct can make it impossible to get a lived experience role within organisations.
I’m not arguing that one perspective is right and another wrong. I’m interested in why one perspective seems present in some spaces and absent from others.
When we say we’re listening to lived experience, I wonder if we are also making space for people whose lived experience leads them to question the construct itself?
I’d particularly love to hear perspectives from outside the UK 🙂.
