Jeez, Laura. Pull yourself together! I thought, as I hastily wiped my eyes and looked around to see if anyone in the airport terminal had noticed I was crying.

I closed the book I was reading, took a few deep breaths and walked around for a while trying to distract myself in a few shops. This sudden outburst of emotion was due to the book I was reading. I had been looking forward to reading it during my travels for a work trip (unpaid carers don’t have time to reach much) and my reaction took me by surprise. This book, Who Cares, by Emily Kenway, was the first time I could relate to a story being told. I’d only read the first few pages, and I could feel the author’s pain, loneliness, fear and frustration as my own. It was such a powerful feeling after years of feeling detached from everyone around me.

I feel this book is essential reading for everyone, as there are only three types of people in the world: unpaid carers, soon-to-be-unpaid carers, and those requiring care. Aside from caregiver’s stories, this book has some really interesting research and ideas on how to solve the care crisis. To further convince you to get yourself a copy, I got in touch with Emily and she kindly agreed to answer my questions:

Could you briefly tell us about yourself and how you came to write the book?

I’m a researcher and a writer, originally from London but now based in Edinburgh. While I was caring for my mum, I used writing to cope – writing has always been this for me, a way of making sense of the world, finding order and meaning, and this was no different. I knew I wanted to write a second book (my first, on ‘modern slavery’, came out in 2021) and it made sense that it would be about unpaid care. For me, it was important that it wove together my story with in-depth research and political analysis – I didn’t want it to be about me, but about the topic, using personal stories (mine but also other people’s) to demonstrate the problems and potential solutions.

How has being a carer changed you as a person? The good and the bad?

It’s changed me hugely. Initially, it broke me, physically and mentally. Now that I’m further away from it, I can see that it taught me to withstand huge amounts of stress, to be capable of regulating and containing my own emotions in order to put someone else first, to appreciate calm and freedom of choice – the sheer luxury of knowing what a day might look like and that it won’t be suddenly derailed by a care incident – and to be a good friend to those going through their own illnesses or caring situations. I have a steel inside myself I didn’t have before, though this also means I give very short shrift to people who dodge the reality of bodies and death – I call it mortality realism! I’m definitely a better person because of it, but it was also far too hard, and that’s one of the things I talk about in the book – care will never be easy, because you’re witnessing suffering in someone you love, but it can be eased by better policies and practices.

How do we explain the inexplicable to those who can’t even begin to understand the hardship of being a caregiver?

I wrote the book with these people in mind – the pre-carers who don’t want to recognise they’re pre-carers. Of course, they’re the least likely people to buy the book! There’s a chapter on psychology which explains why this is, and which I was absolutely determined to put in the book – people are desperate to look away from anything which confronts them with vulnerability, fragility, constraint and mortality. It’s made some events and interviews immensely frustrating, because I can see immediately who’s trying to avoid the topic and disengage with what I’m saying. But there’s lots of us who understand the imperative to get to grips with care, and it’s with those people I feel most at home.

Let’s turn to what can be done to help, you talk about the importance of a network as an alternative to the current system. Can you share what you mean by that?

It’s important first to state that I am not saying we don’t need, or shouldn’t have, government-provided services. I’m finding people are wilfully misunderstanding this even though I’m explicit about that in the book. Social care is woefully underfunded and undervalued, and this must be addressed. But as I show in the book, paid-for services by care workers can never replace and remove family/friends as a key provider of care. And so we need a way of embedding care into our everyday lives, rather than treating it as an unexpected aberration for which no support or rights exist. When we come to care through this lens, we can see that we exist in an ongoing web of interdependency – sometimes we need, sometimes we care, across our lifespan. From this realisation, we can build projects and structures that meet that reality. This includes mutual aid networks, collective care circles, cohousing arrangements, and other ideas – I describe all these in the book with some really lovely examples which were a joy to write about. I’m running an event in April online to explore exactly this: www.emilykenway.com/commons. 

How can we build better care networks in our modern world?

There are two parts to this answer. The first is to recognise that, at the moment, society is arranged to limit our ability to do any of this kind of thing. We’re busy, exhausted, and trying to make ends meet. This is why I explain in the book the ways in which the state would need to create resources, rights and space for us to have the energy and finances for this approach (notwithstanding that there are things we can do in the meantime which ‘prefigure’ that future).

Second, I think we have to start with ourselves. What does it feel like to think about initiating a neighbourhood care circle? What does it feel like to imagine someone you know asking you to do something care-related for them – is there fear that they’ll ask too often, that you won’t know how to say no? etc. We lack the vocabulary and practice of these sorts of reciprocal mutual practices, and we have to begin by building those. These are gold when you can insert them into actual projects because they help them run and thrive.

What do you want readers of your book to take from it?

Firstly, I want current or former carers to take solidarity from the book. I felt so appallingly alone when my mum was sick, and the small human behind the writer just wants no one else to feel that way, ever. It’s a flare in the dark, if you’re there right now.

Secondly, I want people to know that we can build something different, and that there are people doing it right now! And we could be them too. I want to instigate and catalyse new ideas and projects, so that collective care practices proliferate and become a norm. Of course my book won’t achieve that, but it can be part of many actions which together do so.

Finally, where can we go and buy the book? 

Anywhere you buy your books! Bookshop.org is my favourite online option, and all the usual other places too. There’s a handy link here: geni.us/emilykenway (I didn’t choose the url name!). My website is at www.emilykenway.com if people would like to find out more, too

Thank you, Emily, for answering my questions and for being my flare in the dark.