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#HumansCare | Emily Kenway, Author of Who Cares

Published: 23 August 2023
Updated: 23 August 2023
Emily Kenway, author of Who Cares giving a speech

We were delighted to interview author Emily Kenway about her new book, Who Cares: The hidden crisis of caregiving and how we solve it, which was shortlisted for the Orwell Prize for Political Writing, 2023. Emily spoke to our Founder and Executive Director Anil Patil, in her research for this book, and he and our work at Carers Worldwide, is featured in it, so we are pleased that Emily has agreed to be a part of our #HumansCare series.

Hi! Please tell us a bit about yourself.

I'm a writer and researcher based in Edinburgh. I was also the primary carer for my single mum for around 4 years while she had cancer. I've spent many years working on social justice issues in different ways, always secretly writing around the edges of my paid jobs. It seemed natural to find a way to marry these two parts of my life by authoring non-fiction books.

Your recent book, ‘Who Cares’ investigates why we have a care crisis at both a global and individual level and what we can do to solve it. Could you tell us about your experience of becoming a carer for your mum and why you felt you needed to write this book?

I was in my early 30s when my mum first got sick, and the years that followed were a very strange, chaotic and exhausting time. She had 3 types of cancer across 4 years (leukaemia and two kinds of lymphoma) and loads of other health issues as a result of her treatments and compromised immunity. She passed away in September 2020. That time period of being her carer was like being plunged very suddenly into a different world. My 'normal' life was still happening - I had to go to work, I saw friends sometimes etc - but there was this new life too, hidden behind closed doors, in which everything was fearful, unpredictable and heavy. I realised that there were lots of people like me who were carrying the weight of someone else's illness and safety on their shoulders, with all the financial, social, physical and mental impacts that entails, but who were completely overlooked and invisible. I felt it was important to try to change that, in what little way I could, and it also helped me to make meaning out of losing my mum.

“I have the utmost respect for all carers. Until you've done it, you don't know how hard it is, truly”

What struck you about the carers and carer support organisations you spoke to in your research for your book?

I have the utmost respect for all carers. Until you've done it, you don't know how hard it is, truly. It was also horribly striking how consistent across cultures and countries some of the problems are - I had expected carers in countries with more state-provided support to describe a different kind of experience to those with less, but although their material circumstances were vastly better, they often described similar emotional and mental states - despair, frustration, anger, isolation etc. Carers everywhere feel overlooked, forgotten, ignored. But carers everywhere also have a great deal of resilience, wisdom and strength, as well as specific skills gleaned from their role. It was a bittersweet experience to speak with carers in the process of my research because we shared this very special kind of understanding of life and its hardships - of mortality too - which I don't find in people who haven't been in our situations. The work of carer support organisations is vital because it can help to address the hardships - in time, this enables these more positive aspects of caring to come to the fore.  

I also really noticed - and still do, as I speak to audiences about the book - that people who haven't been forced to engage with caring, i.e. who haven't had a loved one who is disabled or long-term sick etc yet, are atrocious at paying attention to the topic. There is this desperation to ignore it and block it out. For this reason, I deliberately included a chapter on the psychology of care, showing how and why this happens and what we need to do to change it. Unless we can bring care into the open and get people thinking in advance about how it might shape their lives, we'll never improve the situation - it'll always be a shocking calamity without proper preparation or support.

“It was also horribly striking how consistent across cultures and countries some of the problems are”

What is the one main thing that you hope people will take away from reading your book?

There are actually two things, because I see two different audiences responding to the book. First, for people who are or have been carers, I hope you find solidarity in the book - I intend it to be a public witness of your strength, suffering and wisdom. I hope it's a book they can buy and give to friends and family whom they want to understand their circumstances. 

For the people who have not yet been carers and who may be shying away from the reality of life - which is that we will need to give and receive care - I hope that they find the bravery to engage with the topic, and learn about ways of living that can be much more mutually beneficial for us as humans - and therefore, as carers.

What are your hopes for the future for carers globally?

There is so much work to do at a global level for carers. For me, it boils down to one thing: we need to embed, psychologically, culturally, legally, internationally - a basic right to provide care. Our global culture is geared towards capitalist ideals about work - so we have a human right to work under the UN Convention, but not to provide care. This cascades down into the situation we have around the world today in which care is deprioritised in relation to paid work. This bears no resemblance to the reality of being human - we need to care for children and for others, like those about whom I've written. There has to be a fundamental recognition of care as the bedrock of our existence, and then policies need to flow from that - many of which I explain in the book, like carer's income, paid carer's leave from jobs, the normalisation across gender and sector of part-time work, and so on.

“For me, it boils down to one thing: we need to embed, psychologically, culturally, legally, internationally - a basic right to provide care”

Our vision at Carers Worldwide, is a world in which every carer is valued and their needs are met. How important do you think it is that we achieve a global change in attitude to the role of caring, to attain this vision?

It is vital. My fear is that we will achieve some positive change in some countries and for some classes of people, and this will benefit those who are already benefiting most from the world as it is. I sought very hard in the book to take a justice-oriented approach - to refuse 'solutions' that are voluntary and available only to those who have the resources to select them.

I included the work of Carers Worldwide in the book for an additional reason. The situation of carers in many countries in the global south is heart-breaking. As Anil said in the interview quoted in the book, the problems are the same in every country around the world, but they are amplified in those countries lacking any state infrastructure to provide support. I don't want to be part of conversations and campaigns that leave out those who need to be heard most - Carers Worldwide is an important mouthpiece in this regard.

At Carers Worldwide we have developed our own Carers Charter and by signing it you demonstrate your commitment to unpaid family carers and pledge to do what you can in your own sphere of influence to promote and support their rights. It feels like you are living and breathing our charter with your work on this book - would you join us and sign it?

Yes of course, I'm very happy to sign it!

“I don't want to be part of conversations and campaigns that leave out those who need to be heard most - Carers Worldwide is an important mouthpiece in this regard”

And finally…what one thing would you take with you if you were stranded on a desert island?

That is such a hard question! My instinct is to say a water filter so I could have clean drinking water, which seems a very boring answer and is born of my great love for through-hiking. Perhaps I'll also say, if you'll permit me a second more interesting answer, a solar powered music player, if such a thing exists.