I'm a carer to three disabled children - and I'm tired of people expecting me to act like a saint

I am sick to the back teeth of mindfulness classes, furrowed brows and hand massages - I want to go out and drink and dance with my friends

Jane Renton
Wednesday 08 June 2016 12:20 BST
Comments
"If one of them isn’t having an SEN meeting, the other is having a meltdown. There are relentless, drawn-out hospital visits."
"If one of them isn’t having an SEN meeting, the other is having a meltdown. There are relentless, drawn-out hospital visits." (Liu Jin/AFP/Getty Images)

Your support helps us to tell the story

From reproductive rights to climate change to Big Tech, The Independent is on the ground when the story is developing. Whether it's investigating the financials of Elon Musk's pro-Trump PAC or producing our latest documentary, 'The A Word', which shines a light on the American women fighting for reproductive rights, we know how important it is to parse out the facts from the messaging.

At such a critical moment in US history, we need reporters on the ground. Your donation allows us to keep sending journalists to speak to both sides of the story.

The Independent is trusted by Americans across the entire political spectrum. And unlike many other quality news outlets, we choose not to lock Americans out of our reporting and analysis with paywalls. We believe quality journalism should be available to everyone, paid for by those who can afford it.

Your support makes all the difference.

I am the mother of three children who also have disabilities. My eldest has Aspergers syndrome, my 13-year-old is registered blind with autism, and my youngest is also an Aspie who is registered blind. I can’t pretend it’s easy.

If one of them isn’t having an SEN meeting, the other is having a meltdown. There are relentless, drawn-out hospital visits. There are targets, poking and prodding, and forms as big as telephone directories to fill in for, well, everything. And that’s on top of the usual Outnumbered shizzle of having more children than the average bear.

So there you go. Caring is like being an unpaid intern to your own life.

In truth, caring is something I feel that I have been roped into – like when the kids join the swimming club and suddenly you’re keeping times at every gala.

I didn’t ask for this extra role to supplement the role that I was equally unprepared for as a slipshod parent. And I know the same goes for the wives who stopped being lovers and the children who now parent their parents.

That isn’t to say that it’s the same for everyone. For some, caring must be intensely life-affirming. It can teach you empathy and humility – and for some it can lead into a whole new area of skills and expertise.

But not me.

What I have come to realise is that society expects every parent to do their duty, but they expect every carer to do it piously. We are obliged to be devoted obsessives to the cause that we are often shackled to by only a kink in a kink in our genetic code.

People are parents by choice, but they are often carers by fortune. And I like the idea of that. A carer by fortune has a piratical air about it, which suits my natural character better. If I don’t have the expertise, I’ll get it at gunpoint – or at least I’ll look good trying.

Because I am not a saint – I’m good at other stuff and I don’t honestly get enough time to do it well. I don’t want solace and solidarity in my fight against the ill health, poverty and social isolation that caring can bring – and I’m not convinced that the majority of others in my situation do either. If we do want anything, we want action.

Where is the campaign to give carers free grants to take college courses to learn how to combine caring with a viable career? Where is the campaign that names and shames the clubs and childcare providers that discreetly charge extra for a child with disabilities – if they answer a query at all? Where is the accountability for Local Authorities who refuse to conduct carers assessments for parents of disabled children, even though they are enshrined in law?

Like anyone else I like to dance until I am giddy and go out all night and forget about it all. I want to make mistakes and make dubious decisions – or make millions. I am sick to the back teeth of mindfulness classes, furrowed brows and hand massages.

I want to do the walk of shame after an insane mini-break, not feel ashamed of a society that looks the other way.

And I prefer Tanqueray to tea anyway.

Join our commenting forum

Join thought-provoking conversations, follow other Independent readers and see their replies

Comments

Thank you for registering

Please refresh the page or navigate to another page on the site to be automatically logged inPlease refresh your browser to be logged in