What you think you know
Getting back into the swing, memories of mince pies fading, cards bringing a second round of joy as I re-read them before putting them in the bin with a slight sense of relief as normality returns. I hope you had a good break.
And on my desk, a scribbled quote that I heard on Radio 4 while trying to re-thicken bread sauce (don’t ask). “Disability doesn’t make you exceptional, but questioning what you think you know about it does.”
It was said by Stella Young, a disability activist who died recently, aged 32 . The comment came back to me when I met a woman at a party and got chatting about a friend of hers whose life has essentially been on hold for two years while she battles depression. The clearly frustrated lady said (and I paraphrase) “Surely it’s time she either gets better help or snaps out of it?”
I muttered as politely as I could that you’d not say that to a cancer patient or urge someone with a broken leg to run a marathon, but both suggestions were met with puzzled looks and the reply “but it’s not quite the same surely…?” To which I said I thought it was exactly the same and that if she could snap out, get out, start to live again, surely she would? Anyone would? My fellow partygoer soon wisely shuffled off to look for more warm prosecco and better festive chat, saying as she went, looking defeated and dejected “It just makes me so angry….”
I don’t know whether she meant angry on behalf of her friend because of her intractable misery, or angry that her friend isn’t getting a grip. Knowing the emotions that mental illness in others evoke, it could equally be either. As the eminent biologist Lewis Wolpert wrote following his own experience of suicidal depression in his 60s: “I used to belong to the “sock” school when it came to dealing with mild depression – just pull them up and get on with things. But when I experienced severe depression myself, I entered a new world.” Before he got ill, he too presumably felt angry or at least frustrated by others’ suffering?
It’s a long time since I worked in mental health, and for every awareness-raising campaign I ran back then, there has been another since; for every anti-stigma campaign, there have probably been several. Yet still I end up having conversations with well-meaning folk who just don’t get it. And every time that happens I wonder why, despite the “1 in 4” statistic (that 1 in 4 people in the UK experience a mental health problem each year) so many people seem to be either untouched by it or any understanding of it, or simply certain that they are immune.
I have written before on this blog about the challenges of embedding patient involvement in the research world, and they mostly centre on an understandable belief among researchers that they know what they are up to. And of course many do, but there are important bits of knowledge that they will lack if they haven’t experienced the thing about which they are such experts. So, as the year begins, this is my new plea to them: you may have had all the training in the world, learnt all there is to know about the kneecap/brain/heart/foot/kidney/(the list is endless) – you may indeed be the world leader. But as Lewis said, it was his own experience that changed his view.
I’d not wish depression (or illnesses of the kneecap/brain/heart/foot/kidney etc) on anyone. So, while devoutly hoping we can skip the experience, let’s have the wisdom and humility, all of us, to heed Stella Young, and “question what you think you know.”
Happy New Year.