In the UK alone, there are around six million unpaid caregivers – you might be one right now, or you might be one in the future. At 31, journalist Emily Kenway became a carer for her mother, after she was diagnosed with terminal cancer. Her experience of the visceral realities of caregiving has informed her latest book: a striking, honest and intimate page-turner, Who Cares.

Who Cares shines a light on the invisible care that keeps the world turning, and the desperate need to value and recognise its contributions. It explores the complexities of care, and the labour, love and lives involved in it. Contributing millions of hours of unpaid labour yet largely ignored by politicians and decision-makers, caregivers remain marginalised from political, social and economic support. 

Drawing on expert research with carers across the world and interrogating the policies around care, this book gives caregiving the airtime it so deserves. Kenway reveals the universalising impact of giving and needing care as humans, and why as a society we must centre care instead of ignoring it. Here, we speak to her about the intersection of love and care, how work inhibits our capacity for caregiving, and how capitalism tries – and fails – to defy death.

You open the book with your experience of becoming your mum’s carer when she was diagnosed with cancer – how did this transform your understanding of care?

Emily Kenway: Before she was sick, I hadn’t really thought about care before. I have friends with children already, but that’s a very different kind of caring experience, and it’s one that you know is coming. I definitely had a feminist approach to it already latent within me - my mum was a single mum so I fully understood how women are the kind of default caregivers of our species. But I hadn’t applied that to myself.

I had a very common, naïve understanding of what my life was – a level of independence in my mind and ability to chase dreams and what have you. Then I realised that actually, that’s all completely contingent on luck, if you love anyone. So it completely revolutionised my understanding of how I exist in the world and how I’m deeply embedded within other people and how that will have requirements.

It also showed me a whole world I did not know about, a world of a lot of suffering and pain. We’re failing to support care so much and ignoring it. Finding myself late at night feeling so alone in the situation – because I am younger than people normally are when they're the main carer of a parent – made me really furious, actually. Like a lot of people, I assumed care of sick and elderly people happens differently than it actually does. I think a lot of people assume most of that kind of care is happening in care homes or is performed by paid care workers, when actually, the number of people in care homes in the UK is 490,000 and there are about six million unpaid caregivers.

“What would it look like if love was at the heart of our policy arrangements, rather than work?” – Emily Kenway

You write that “putting caregiving into the category of work is useful for highlighting its arduous nature; the long hours, the lack of breaks, the tasks like lifting that can cause physical harm. In the work world, we legislate and regulate for those things and we picket our employers. How do we picket love?”. How does the intersectional nature of love and care make conditions for carers harder to improve?

Emily Kenway: Practically, it’s incredibly hard to make structural changes to this kind of care because of the nature of it. If I had gone on strike, my mum – at the extreme – might have died. At a lesser extreme, she wouldn’t have had food or had her medication, so I could not take away that labour. So we lack the tools that are available [to those] in formalised work.

It can be very dangerous to talk about love in relation to care, because people think that you’re descending into an argument about care being ‘natural’ for family members to perform, and therefore not a problem. That has made us lose sight of the fact that a lot of people who have sick, impaired, or very elderly loved ones, do want to perform at least some of that care – more care than a full-time job would allow them to perform – and that is because they love them. Instead of thinking that if you talk about love in relation to care, you’re being really traditional and conservative, we need to say, ‘actually, this is radical’. What would it look like if love was at the heart of our policy arrangements, rather than work?

In the book you interviewed a range of people involved in care work – was there a story that resonated or stayed with you most?

Emily Kenway: One of them is Ayesha in Kathmandu. She had helped her mum care for her father and then, just as her father had passed away, her mum got cancer as well. Then she cared for her mum, who passed away. For me, it was very powerful to speak with her, partly because we’re thousands of miles apart, but we’re the same age and have gone through the same situation. That was amazing, just to find this solidarity in such different cultures and so far apart.

Also because one of the things I was very careful about in the book was not to assume how women who are providing unpaid care in other cultures feel about it. I was very keen to hear from Ayesha about what it felt like to be in a culture that doesn’t have any [adequate] services, where care falls on the family – and primarily on her as the oldest daughter. Was it different to me doing it because she lives in Nepal, or not? It was very powerful, because she was very clear that she absolutely would do it again, and very, very clear that it needs better support and better visibility.

Ayesha actually had a brain aneurysm a year or so after her mum passed away, which was attributed to stress. She doesn’t have the career that she had expected to pursue, because she had to leave university. She lost her relationship too, like I did. And so for me, it was very important all the way through the book to retain a global focus and not just a western focus.

You write that care needs to shift from being a sector to a species activity - what would this shift look like in an ideal world?

Emily Kenway: We have to change the work world into one which expects that everyone in it will potentially be going to work and providing care. At the moment, we’ve got some parental leave, which is actually insufficient, and we don’t have any other kinds of caregivers’ leave. It’s what I call a gender-neutral approach to work policy – you assume anyone you hire is probably going to need to be part-time for chunks of time in their role, because they’ll have caregiving responsibilities. I always say to friends of mine, if one of your parents gets terminally ill, you don’t have any right to paid leave to be with them, and we really need to be fighting for that.

In the book I also talk about setting up intentional care circles in your daily life, where it’s welcome and acceptable to reach out for something you need and where it’s also welcome and acceptable to set boundaries. When you do it, which I have, people welcome it – everyone wants to know that if they’ve got the flu someone will drop them some Lemsip! That tiny thing creates stronger and stronger bonds. It’s what I call ‘kinning’ – creating kin, rather than this static idea of family.

The other thing that I would say – which I think we shy away from – is that a lot of the time when we’re talking about these topics, we speak about birth, the maintenance of health and wellbeing, and the production of healthy workers. And actually, we need to remember that there is this whole other category of care [caring for sick, impaired or elderly loved ones] that’s been completely overlooked, that doesn’t fit neatly into those things. We should ask: why are we so afraid of thinking about this topic properly? That is the seed of political change.

Why do you think that is? Because we’re scared of death?

Emily Kenway: I think it’s a cultural failure, as it’s not uniformly true in all cultures. I have a family member who is from Indonesia and in his life it has been completely normal to visit many people close to dying – not just grandparents – so when he was seeing my mum in the last week or so of her life, he wasn’t dealing with the shock of that being the first time he’s seen [death]. That’s what makes it feel very surreal when you're grieving – like, what the hell is happening here?

Everything in capitalism is geared to pretend that nature isn’t real. We’re pretending that the most fundamental fact is untrue. We are both self-conscious and intelligent beings and animals, and capitalism’s job is to try to tell us that if we just try hard enough, we can only be the former. We don’t want to age. We don’t want to see what our meat looked like before it was skinned and put under cling film. It’s all part of the same thing, and we really need to revolt against that if we’re not going to relegate people who are impaired and really unwell to the bottom of society.

Who Cares: The Hidden Crisis of Caregiving, and How We Solve It by Emily Kenway is published by Headline and available now.