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We argue over Charlie Gard, but forget those spending whole lives caring for a disabled child

The everyday misery of care work is hidden behind abstract arguments over life and death.

“Sometimes,” says the mother, “I wish we’d let him go. Or that he’d just been allowed to slip away.” The father agrees, sometimes. So too does the child, who is not a child any more.

On good days, nobody thinks this way, but not all days are good. There have been bright spots during the course of the past four decades, occasional moments of real hope, but now everyone is tired, everyone is old and the mundane work of loving takes a ferocious toll.

When we talk about caring for sick children, we usually mean minors. It’s easiest that way. That for some parents, the exhaustion and intensity of those first days with a newborn never, ever ends – that you can be in your fifties, sixties, seventies, caring for a child in their twenties, thirties, forties – is not something the rest of us want to think about.

It’s hard to romanticise devotion strung out over that many hopeless, sleepless nights. Better to imagine the tragic mother holding on to the infant who still fits in her loving arms, not the son who’s now twice her size, himself edging towards middle-age and the cliff edge that comes when mummy’s no longer around.

Writing on the tragic case of Charlie Gard, the Guardian’s Giles Fraser claims that he would “rain fire on the whole world to hold my child for a day longer”. The Gard case, he argues, has “set the cool rational compassion of judicial judgement and clinical expertise against the passion of parental love”: “Which is why those who have never smelled the specific perfume of Charlie’s neck, those who have never held him tight or wept and prayed over his welfare, are deemed better placed to determine how he is to live and die.”

This may be true. It may also be true that right now, countless parents who have smelled their own child’s specific perfume, held them tightly, wept for them, loved them beyond all measure, are wishing only for that child’s suffering to end. What of their love? What of their reluctance to set the world aflame for one day more? And what of their need for a life of their own, away from the fantasies of those who’ll passionately defend a parent’s right to keep their child alive but won’t be there at 5am, night after night, cleaning out feeding tubes and mopping up shit?

Parental – in particular, maternal – devotion is seen as an endlessly renewable resource. A real parent never gets tired of loving. A real parent never wonders whether actually, all things considered, it might have caused less suffering for a child never to have been born at all. Such thoughts are impermissible, not least because they’re dangerous. Everyone’s life matters. Nonetheless, there are parents who have these thoughts, not because they don’t love their children, but because they do.

Reporting on the Gard case reminds me of the sanitised image we have of what constitutes the life of a parent of a sick child. It’s impossible not to feel enormous compassion for Charlie’s parents. As the mother of a toddler, I know that in a similar situation I’d have been torn apart. It’s not difficult to look at photos of Charlie and imagine one’s own child in his place. All babies are small and helpless; all babies cry out to be held.

But attitudes change as children get older. In the case of my own family, I noticed a real dropping away of support for my parents and disabled brother as the latter moved into adulthood. There were people who briefly picked him up as a kind of project and then, upon realising that there would be no schmaltzy ending to the story, dropped him again. Love and compassion don’t conquer all, patience runs out and dignity is clearly best respected from a distance.

All too often, the everyday misery of care work is hidden behind abstract arguments over who gets the right to decide whether an individual lives or dies. I don’t know any parents who truly want that right. Not only would it be morally untenable, it’s also a misrepresentation of what their struggles really are and mean.

What many parents who remain lifelong carers need is adequate respite support, a space in which to talk honestly, and the recognition that actually, sometimes loving is a grim and hopeless pursuit. Those who romanticise parental love – who, like Fraser, wallow in heroic portrayals of “battling, devoted parents” – do nothing to alleviate the suffering of those whose love mingles with resentment, exhaustion and sheer loneliness.

There are parents out there who, just occasionally, would be willing to set the world on fire to have a day’s respite from loving. But regardless of whether your child lives or dies, love never ends. 

Glosswitch is a feminist mother of three who works in publishing.

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Universal Credit takes £3,700 from single working parents - it's time to call a halt

The shadow work and pensions secretary on the latest analysis of a controversial benefit. 

Labour is calling for the roll out of Universal Credit (UC) to be halted as new data shows that while wages are failing to keep up with inflation, cuts to in-work social security support have meant most net incomes have flat-lined in real terms and in some cases worsened, with women and people from ethnic minority communities most likely to be worst affected.

Analysis I commissioned from the House of Commons Library shows that real wages are stagnating and in-work support is contracting for both private and public sector workers. 

Private sector workers like Kellie, a cleaner at Manchester airport, who is married and has a four year old daughter. She told me how by going back to work after the birth of her daughter resulted in her losing in-work tax credits, which made her day-to-day living costs even more difficult to handle. 

Her child tax credits fail to even cover food or pack lunches for her daughter and as a result she has to survive on a very tight weekly budget just to ensure her daughter can eat properly. 

This is the everyday reality for too many people in communities across the UK. People like Kellie who have to make difficult and stressful choices that are having lasting implications on the whole family. 

Eventually Kellie will be transferred onto UC. She told me how she is dreading the transition onto UC, as she is barely managing to get by on tax credits. The stories she hears about having to wait up to 10 weeks before you receive payment and the failure of payments to match tax credits are causing her real concern.

UC is meant to streamline social security support,  and bring together payments for several benefits including tax credits and housing benefit. But it has been plagued by problems in the areas it has been trialled, not least because of the fact claimants must wait six weeks before the first payment. An increased use of food banks has been observed, along with debt, rent arrears, and even homelessness.

The latest evidence came from Citizens Advice in July. The charity surveyed 800 people who sought help with universal credit in pilot areas, and found that 39 per cent were waiting more than six weeks to receive their first payment and 57 per cent were having to borrow money to get by during that time.

Our analysis confirms Universal Credit is just not fit for purpose. It looks at different types of households and income groups, all working full time. It shows single parents with dependent children are hit particularly hard, receiving up to £3,100 a year less than they received with tax credits - a massive hit on any family budget.

A single teacher with two children working full time, for example, who is a new claimant to UC will, in real terms, be around £3,700 a year worse off in 2018-19 compared to 2011-12.

Or take a single parent of two who is working in the NHS on full-time average earnings for the public sector, and is a new tax credit claimant. They will be more than £2,000 a year worse off in real-terms in 2018-19 compared to 2011-12. 

Equality analysis published in response to a Freedom of Information request also revealed that predicted cuts to Universal Credit work allowances introduced in 2016 would fall most heavily on women and ethnic minorities. And yet the government still went ahead with them.

It is shocking that most people on low and middle incomes are no better off than they were five years ago, and in some cases they are worse off. The government’s cuts to in-work support of both tax credits and Universal Credit are having a dramatic, long lasting effect on people’s lives, on top of stagnating wages and rising prices. 

It’s no wonder we are seeing record levels of in-work poverty. This now stands at a shocking 7.4 million people.

Our analyses make clear that the government’s abject failure on living standards will get dramatically worse if UC is rolled out in its current form.

This exactly why I am calling for the roll out to be stopped while urgent reform and redesign of UC is undertaken. In its current form UC is not fit for purpose. We need to ensure that work always pays and that hardworking families are properly supported. 

Labour will transform and redesign UC, ending six-week delays in payment, and creating a fair society for the many, not the few. 

Debbie Abrahams is shadow work and pensions secretary.