I often hide in the summer. This year I can't.

The visibility dilemma

I tend to think the conversation around social media is all together too narrow. People love to demonise it. I first found my audience online, where I wrote micro blogs on instagram about topics like unpaid care and the impact of suicide, that no one seemed to be writing about in ways that felt true for me.

When I wrote my first book Tender, I included a whole section on the vast possibility of community for disabled people and carers that social media has created. When you can’t leave your house, or are exhausted from the micro aggressions being disabled in public can bring, places like Instagram can be a way of reaching like minded others.

At its best, Instagram can be a place of extraordinary connection.

Clover Stroud

wrote recently about the friendships it has given her, culminating in deep, real life connections. This has been my own experience too. My writers group (shout out to

Caro Giles

and

Nicola Washington

) was formed via the platform and now we can’t imagine life without each other. It is on Instagram that I get the most messages from other unpaid carers, and from those bereaved by suicide, thanking me for putting a voice to things which so many find too painful or shameful to say out loud. It has been a place of utter humanness, of kindred spirits and genuine relationships.

But there are times when the noise is so great that I need to shut the whole thing off. That noise is at its worst for me when we are at times of the year when I struggle most as an unpaid carer - August and Christmas. When routine has all but gone and my son’s needs escalate and I am spending most of my days keeping him emotionally regulated. At these times I must go inward, not outward.

Summer at the Thames beach

I’m not delusional in thinking that summers are joy filled for most families, juggling childcare and paid work, and worrying constantly about the high cost of every activity (or worrying about not providing enough activities). But supporting a teen with a developmental disability, when his needs are only getting more challenging to meet as the world becomes less accessible to us, is in a different league.

So I tend to disappear.

August is the time I usually delete the Instagram app, ignore Twitter and go inside the cocoon of our family. I don’t even see many friends. Just a few nearby who I know will not be shocked or saddened when they see the state we can sometimes get into at this time of year.

But this year I can’t disappear.

When it became clear that due to an un-forseen printing delay, that we would have to shift the publishing date of Home Matters from early July to the end of August, I cried for a day. I called my lovely agent and asked her to respond on my behalf because I couldn’t yet even type the words that were needed, I was so upset. And then I struggled to explain why I was so upset.

Being a single parent and a freelancer does make working in the summer holidays hard. And publishing a book requires a lot of (largely unpaid) work to give the book the best possible chance of being visible and finding its audience. But I’m used to being busy. I’m used to doing the work of multiple people - running a household, earning the money, supporting a disabled teen, spending time with my other, almost teen.

But in our family, at certain times of the year, it’s not a case of getting in a bit more help, or paying for a bit more support or working a bit harder, earlier or later. It’s more like I’m trying to do all that, whilst my house is actually burning down. Because thats what August feels like. There is so much uncertainty we hold as a family and at the end of summer it reaches its peak.

When things are happening in your own home that are hard and sad and taking you to the brink, it is safer to avert your eyes from the outside world. So I usually take a few weeks off from looking. I create as much safety as possible, because there is so much about our safety I can’t control.

That is why I cried when the pub date was moved to what is often the worst week of the entire year for us - the last week of the school holidays. Not just because I knew I would have to work all the way through the summer but because I would have to be outward looking. I would have to be visible. You can’t disappear for a month before the book you’ve been working on for two years is published. After all that work? It’s not an option.

I don’t mind promoting my books usually. It’s time consuming and hard to fit in amongst other paid work but it can be exhilarating. To have conversations with others about work that came from somewhere deep inside you. To see the response to your words, to see your book fly off and become something else, no longer yours. What a huge privilege. What a joy.

So I’m not disappearing this summer. I am going to be more online this August than I have been for a long time. I want people to know about this book that I worked so hard on. I want it to find its readers. This is a book about homes that includes conversations about grief, mental health, disability, caring, physical and emotional safety and the interplay between these things and the homes we create. I can’t unlink this book from all the challenges we face as a family, just like I can’t separate my son’s needs from the home I have created for us.

I hesitated about writing this, mainly because I don’t share details of my son’s life anymore as he gets older (if the above of our challenges sounds very vague, it’s for his privacy). But to not write about it at all, feels completely disingenuous. I don’t believe unpaid care should be invisible. When important work is invisible, it remains unsupported, under or un-paid, making those who do it vulnerable and excluded from society. When no one speaks up about the costs, pretending everything is fine in order to spare their loved one from feeling its their fault (it is absolutely not their fault), then we will never, as a society, provide unpaid carers with the support they need and disabled people with the support they deserve.

In the lead up to publication, I’ll be worrying about far more important things than how many copies of the book will be sold. But that doesn’t mean my work is not important. My life cannot be swallowed whole by my caring responsibilities. And my responsibilities, my experiences, are also what makes me the writer I am.

This August I’m going to have to be brave. I’m going to have to show up, even after meltdowns and sleepless nights. As a parent carer I have always worried about becoming scared of everything. It is so hard not to be, when the smallest, everyday things can be so difficult. But I am determined not to be scared of being visible this summer.