Debra Allcock Tyler: Imagining and sympathising are not the same as lived experience

I have spent the past 18 months in considerable pain with restricted mobility resulting in a major operation. It has been shockingly eye-opening about how much I didn’t know about things I thought I knew.

For starters, I really had not appreciated how much human beings prioritise cars over people. Not slowing and stopping for those with visible limited mobility to cross the road, for example.

And surely there’s a special place reserved somewhere hot for those who half-park on pavements, forcing people to step out into the main road – particularly hard for those who can’t move quickly. Putting the lives of humans at risk because you don’t want to be the one who blocks traffic!

To my utter shame, until this experience I was absolutely one of those people: not thinking about what and who really matters.

There are so many other things I hadn’t realised. For example: even when you’re in pain and totally reliant on others to help you, you still need to feel that you have your dignity.

While I was in hospital recovering from the operation a physiotherapist turned up to test my mobility and take me through some exercises.

I pointed out that I wasn’t dressed and asked if he could come back when I was. He said he didn’t mind my state of undress.

I repeated: ‘I’m in my nightie and I don’t have any knickers on. Please can you come back when I’m dressed’. He replied: ‘Honestly, I don’t mind. It’s OK.’

Except it wasn’t OK for me. He may have seen it all before, but he hasn’t seen my all-befores!

But, in fairness to him, I have done that too. I have completely dismissed someone else’s embarrassment in a situation, thinking I’m being kind, oblivious to the fact that it wasn’t about my comfort but theirs.

So I have been forced to learn the hard way about the value of lived experience. And I’m grateful for it. I probably paid lip service to it before – but I am now firmly of the view that you cannot be effective as a board if you don’t have someone on it with some level of lived experience of your cause.

If you have not experienced it, you do not know. You do not know what it’s like to experience racism if you are white; you do not know what it it like to battle addiction if you are not an addict; you don’t know what it is like to deal with the loss of a child if you have never experienced it; you don’t know what it’s like to have limited mobility if you have always been fully mobile.

Imagining and sympathising are not the same and not enough. This is why good governance means having people with lived experience on our boards as part of the mix.

We must no longer tolerate weak excuses about why those with lived experience are not on boards. Know what you don’t know. And look around you. Can you honestly say that there is anyone on your board who reflects those that you serve – who might have insights that you can’t have?

If you can: well done. If you can’t: please fix it.

Originally published by Third Sector.