Penny Wincer on the “imperfect art of caring”

Unpaid care is a role that Australia-born, London-based single parent Penny Wincer is acutely acquainted with. Her book, ‘Tender: The imperfect Art of Caring’, shares stories from caregivers across the globe alongside Penny’s own experiences – both of caring for a parent, and a child.

Having spent much of her childhood and young adult life supporting her mother – who battled mental health challenges and died, by suicide, when Penny was 22 – these days, the author and writing coach cares for her 14-year-old son, Arthur, who was diagnosed with autism at three years old, soon after his sister, Agnes, came along.

Penny also hosts a podcast, helps other writers with their book pitches and is soon to launch a second book of her own. A former photographer, pursuing a career has been a non-negotiable for this unpaid carer – even if it did mean pivoting, in swift fashion, from one industry to another.

Chatting from her London home, Penny shares how she let go of expectations and embraced, as she calls it, the imperfect art of caring.

Penny, it seems peaceful where you are – but I’m guessing that’s because we’re chatting during school hours. Do you get much time to yourself?

Arthur and Agnes being at school is so important because it's like the only time I’m awake and alone in the house, you know? I’m a single parent and when the kids were younger, I always arranged for a nanny to stay late one evening a week. The main reason I did it every single week – and continue to do so – is because if I was always the one to put Arthur to bed, nobody else could ever do it.

Everything we do has to be quite routine, so in order for a carer to be able to put Arthur to bed, it has to happen every week. This means that one day a week I have an evening where I can work a bit later, I can go out on a date or I can meet up with a friend. Arthur’s used to having one-to-one care from someone else – and he’s always been really good at connecting with other adults – but it has to be consistent.

I’m also very relaxed about screen time. Without screens, as a single parent, I would literally be looking after Arthur the whole time because he can't really play independently – unless it’s super messy sensory play.

I know other people would look at our lives and just be like, “Oh my God, they’re on their devices quite a lot”. We don’t do the kind of wholesome activities together that other families get to do, so it does feel like a little bit of a compromise. It’s taken a lot of letting go to not beat myself up about the way we do life.

You know how Instagram shows us random things now, from random people that we don't follow? Occasionally I get shown some parent who’s really sad because their autistic kid doesn’t get invited to parties. And I’m like, but is your child sad about that? If they are, then it’s awful, of course. You don’t ever want your child to feel excluded, but I don’t think my son has ever been that worried about not being invited to places. He doesn’t like kids his own age that much.

He does love a party in our house, so I throw a Christmas drinks party every year. He’s still carrying around his iPad everywhere he goes, but he will plonk himself down in the kitchen, right in amongst all the guests, eating his own little snacks. He’s quite happy to be in his house with people he knows. He doesn’t necessarily want to go to some other person’s party.

We do tend to impose our own ideas about what would have made us happy, and what we would have wanted. So I’m constantly trying to think, well, does he care? Does he really want that?

I think that’s a brilliant perspective to bring to any child, disabled or not. But it can be very hard to shirk societal expectations around what families “should” be doing. Do you still feel that pressure?

These days, that stuff doesn’t bother me as much. The thing that does worry me is when my capacity to do things affects Arthur being out and about in the world. After the Covid lockdowns, he couldn’t cope with so many things because we didn’t do them for ages.

He loves the bus and he loves the tube, but he can’t cope when it gets too full. Also, if he’s got something very particular in his mind and we aren’t doing that – and he hasn't been able to communicate what it is that's in his mind that he's expecting we’ll do – he will have a massive meltdown in public, which is dangerous.

When Arthur’s having a meltdown, he goes completely blind and will just bolt in front of a bus and not see it. I have to literally pin him down in public if he’s having a meltdown. It takes so much physical and emotional energy to do that, that there are days where I’m like, I can't have one of those days. So no, we’re not going on a bus today. And that’s what I feel quite sad about – that often my capacity stops us from doing something.

Parenthood was not your first foray into unpaid caring. As a child and young adult, you cared for your mum. Can you take me back to when you discovered that you would be involuntarily stepping into an unpaid care role again, this time for your son?

I remember hearing the term ‘young carer’ for the first time in my late 20s and being like, Oh my God, that's what I was. I was a young carer – and everything suddenly made so much sense. I understood that my relationship with my mother had changed completely because of what I was doing to help her. But at the time, I didn’t have a word for it.

So when the fact that I’d be caring again became clear to me, even before Arthur’s diagnosis – he was diagnosed with autism at three, but we started to realise there was something going on when he was two and my daughter was born, because he did not cope with her arrival at all – I realised part of my panic about it was not really to do with him, it was to do with me. My panic was like, I know what this is like, but there’s no getting out of this one.

My mum died when I was 22, but also, she was my mum. There were other people caring for her – I wasn’t the only one. But with my son, it really dawned on me that this is it. The buck stops with me. I don’t have my own mum at this point. I don’t have any other family in the UK. I was married at the time and so Arthur had – and still has – his dad, but that was it. And that was incredibly overwhelming because I knew how intense it was going to be.

When I was teenager, it often felt like my mum’s life was in my hands. That’s what it felt like all over again, on such a kind of enormous scale.

I wasn’t worried about the autism diagnosis – I thought Arthur was a fascinating kid. I was only concerned about the level of need he would have. I was deeply worried about how much it was going to require from me for the rest of his life. How I was going to manage that and how I was going to manage my energy and how I was going to manage to earn a living, all of those things.

How did you manage all of things, especially once you and your husband separated? What supports did you put around yourself?

We separated when Arthur was five and Agnes was three, so it was a couple of years after Arthur’s diagnosis. First of all, I did all of my research about what I could claim as a single parent and made sure I was going to be financially okay. I knew it would be difficult – and it was. I look back now and I think, I cannot believe I was able to put all these things in place.

Here in the UK, if you’re in a single-income household, you’re usually eligible for some benefits to bump up that income if you have children. Things have changed quite a lot over the last 10 years, but at that point you could apply for a partial rebate to your childcare. That childcare had to be Ofsted [Office for Standards in Education] registered and unfortunately, there weren’t any childcare services for disabled children, but I could hire a nanny as an employee and, if they were Ofsted registered, I could get a rebate.

So I did that. I got care in place and I figured out a way to pay for it. I made friends in the neighbourhood through my daughter, who is not disabled, so I was able to engage much more with her class and get more involved with parents of children in her class. The kids would all be invited to a birthday party on a Saturday, and I’d be like, can anyone come and pick up Agnes and take her for me? And people would jump in and say yes. I had to get good at asking for that kind of help – so that was a big thing.

I also changed my entire working life around so that I’m working from home. That meant leaving one career and starting a whole new one. It was either that or just not work and live entirely on benefits and, basically, be living on a shoestring and struggling. If I stayed a full-time carer who didn’t work, I would be locking myself into poverty for the rest of my life. I felt very strongly that I was not going to let that happen.

That pivot saw you going from photographer to published author, writer and writing coach. How did your career as a professional writer – and your first book, ‘Tender: the imperfect art of caring’ – come to be?

When I was at uni I did a double-major in creative writing and film, so I was writing very early on and kept writing through my 20s, but then I got very busy with my career as a photographer. When Agnes started school I had a spare few hours on a Friday and I was like, I’m going to use that time to write. I’ve got to do it now and I’ve got to ring-fence it, because my photography work could bleed into it, housework could bleed into it, everything could bleed into it. So I’m just going to do it.

After a few years of writing for a few places online and in some national press, I wanted to do something much meatier. I was skirting around the topic of unpaid care and then it suddenly clicked. I can’t avoid it. I've got to write about this. I wanted to write fiction, but it was almost like I needed to write that first. I was just so frustrated that nobody was talking about it in a way that I had experienced it.

Whenever I heard unpaid care being talked about in the media, it was always about people caring for dying parents or partners. It was never about caring for disabled kids. It was never about young people caring for parents with mental or chronic illnesses.

From writing and sharing online in various places, I was building a network of people who were spending huge chunks of their time in unpaid care – and it wasn’t for parents who were going to die in the next year or two. It was people who were going to do it for the next 10, 15, 20 years. And I was like, where is this conversation? So that’s when I decided to put a proposal together for my first book, in late 2018.

I wrote that proposal at the beginning of 2019, got an agent and had ‘Tender’ commissioned by the middle of that year. It came out in 2020.

I was still doing photography at that point, but I had to turn down a bit of work because I wrote the whole book in about four months and had to do tons of interviews. I realised I was so much less stressed working from home, knowing that when something went wrong, I wasn’t over the other side of London on a shoot not able to leave until 6pm. I’d planned to take five years transitioning from one career to another. Then 2020 happened and everything went to shit.

I lost all of my work as a photographer. I didn’t have any reliable unpaid carers and, with the on again, off again nature of his schooling at this time, Arthur’s needs went through the roof. I got used to being on a really tight income, retrained to be a writing coach and did a master’s degree in creative writing.

You also launched your book, ‘Tender’, which saw you chatting with a wide range of unpaid carers. Its subtitle is “the imperfect art of caring”. Why do you describe caring in this way?

It was really because there’s no single way of doing it. Just like parenting, I guess, there’s no single “right” way. It’s just figuring out what works for you and the person you’re supporting and trying to make it work. I guess that’s why I called it an art, because there’s no kind of rigid way that you can do it that’s “correct” – it has to be a fluid thing.

The perfection thing, I think, is particularly bad for parent carers for a number of reasons – the main one being that often parents don’t identify as carers. It’s only once we recognise that, that we can understand why we’re not coping as well as we think we should cope. I think that recognition is super important, because then you can back off yourself a bit.

I think another reason perfectionism is particularly difficult for parent carers is because the stakes are really, really high because you’re supporting someone at the beginning of their life, not the middle or the end. This is a kind of forever thing – and we’re very vulnerable, because of that. We’re going to have to do this for the rest of our lives and then we have to worry about who’s going to do it when we die.

We also put so much pressure on parents – particularly on mothers. If something’s not right, it's usually the mother’s fault. And we don’t feel that way about people caring for elderly parents. If someone is struggling to support a mother or father, or their mother or father-in-law, people are very understanding about why you might struggle with that and why that might be emotionally, physically and financially really, really difficult.

But when it comes to supporting a child, we just expect mothers to just do it and never complain, never have their own needs. It’s this idea that giving ourselves to our children is natural, but giving ourselves to our parents is somehow unnatural and, as such, would be difficult. So I decided to talk about perfectionism in the book, quite specifically around caring for a child.

You really raised awareness around this cohort. As the Sunday Times put it, ‘Tender’ is “an insightful and well-timed book that forces us to confront the stereotypes – and prejudices – we hold”. Can you tell us a bit about your new book, ‘Home Matters’, which is coming out later this year?

It’s another narrative nonfiction book and it’s about homes and why homes matter. It sort of brings together my two passions, because I was an interior photographer and I spent a lot of time in people’s homes. This book is very personal, actually. I talk quite a lot about my childhood home and also the home I've now created as an adult here in London.

In each of the chapters I go to visit two different homeowners, some of whom are disabled. Some of them are in social housing, some of them are in more typical kinds of homes, like the ones you see in an interiors magazine. And I talk to them about how they’ve created their homes.

The book is essentially about how you build a home from the inside out, rather than from the outside in. It sounds so different to ‘Tender’, but it’s weirdly not. The topic is different, but the style is kind of similar. So that's the next book – and I’m working on fiction as well. Other writing is also happening and, you know, paying the bills!

Home Matters will launch in July 2024. You can find Penny’s first book, Tender, in bookstores and online, and follow Penny’s work via her website and Instagram account.

Let’s clear out the complexities of care. Try Hibi for free here.

Want to share your parent-carer story? We’d love to hear it. Get in touch with our team at hello@hibi.health