Carers Week 2024: It’s time to claim power for carers
Published: 10 Jun 2024
Emily Kenway is a researcher, author and former carer. Her critically acclaimed book, ‘Who Cares: the Hidden Crisis of Caregiving and How We Solve It’, is out now.
It’s 1974 and Carmita Wood has quit her job in a university department. She’s quit because she’s been sexually harassed by a professor and all attempts to ameliorate or avoid his behaviour have failed. Now jobless, she applies for unemployment benefits. But there’s a problem. She needs to justify why she left. The term ‘sexual harassment’ has not yet been invented, let alone entered legal vocabulary. She doesn’t know what to write. She opts for ‘personal reasons’. Her claim is rejected.
Wood’s case became a pivotal moment in women’s history. Second wave feminists rallied around her, coining the term ‘sexual harassment’ and in the process, turning her experience from an inextricable and invisible part of working women’s lives into an issue to be addressed. Of course, this didn’t eradicate the underlying problem, but it made that problem sayable, a crucial first step toward change.
To name an experience is to give it power.
Just as those historic feminists popularised a label which helped society to see and understand women’s plight in the workplace, we must do the same for carers now, i.e. those people who support a loved one who is long-term unwell, disabled, or frail and elderly. Only by naming this circumstance and articulating the ways in which it affects our lives can we get the support we need.
But despite the importance of embracing the ‘carer’ label, many people choose not to take up the term, even when their circumstances fit the definition. Around half of the respondents to one Carers UK survey took over a year to self-identify as carers, and more than a third took over three years. My personal experience matches these findings – it took me about two years to realise that my relationship to my mother, who had cancer, had changed from mother-daughter into something to which ‘carer’ might legitimately apply.
There are several reasons why this under-identification occurs. My case replicated academic research which found that the variability and pace of progression of the loved one’s condition affected self-identification: when the situation is so changeable that continuity is hard to spot, or when there is a gradual worsening without a major shift or acute event, we can be slow to reassess our roles. This stops us finding out about rights and support, in the workplace and beyond.
Additionally, some people may have set ideas about the circumstances to which ‘carer’ applies. Are you legitimately a carer if you’re also working? Is it ok to use the label if you don’t have to do something care-related every single day? What if it’s not solely you supporting the loved one – does that still count? And so on. The answer to these questions is yes – if you are helping a loved one with the activities of daily living because they cannot perform some or all of them for themselves, then you are a carer. The degree to which you need support will differ depending on the specifics of your circumstance, but that doesn’t change the applicability of the label.
Factual concerns aside, in the research for my book, I found many examples of carers past and present refusing the term on moral grounds. They viewed their caring responsibilities as part of their natural role as a mother, wife, husband, daughter, etc. To call themselves a ‘carer’ was an affront to the practice of love, and they worried that by differentiating care from the rest of their relationship, it might seem as if care was a bad thing to do, rather than part-and-parcel of family life.
Relatedly, people may fear recognising themselves as carers because it makes clear that a fundamental change has occurred. Our loved one may be sick or elderly: something is in the process of being lost. In one study, spouses made clear that they preferred to be seen as ‘caring’ for their partners, but not as their ‘carers’; the verb felt fine, but the noun, and its implied shift in identity and relationship, did not. More positively, and rather beautifully, a woman featured in my book describes herself not as her husband’s carer, but as his ‘possibility maker’.
Of course, it’s true that we expect care to be an intrinsic part of loving or biological bonds. So why highlight it like this?
Because we live within another set of expectations too – expectations about being able to earn a living, to get a healthy amount of sleep, to care for our own mental and physical health, and to maintain a social and romantic life. All these aspects are, at best, challenged, and at worst, harmed, by being a carer, especially when that carer is invisible in society and thus receives inadequate support. And so, while Wood needed to label her experience to highlight its fundamental badness, we can label ourselves carers for a more positive reason: to recognise it as a specific circumstance which entails additional need for rights and support.
And given that there are at least 2.5 million people in England and Wales who are both unpaid carers and in employment, every working day is an opportunity for this to happen. In the workplace, carers themselves can create internal support groups and forums, gathering for peer support and organising to ask for carer-friendly workplace measures. And employers can take action too, using guidance and toolkits from memberships like Working Families. This isn’t just morally good: a Harvard Business School report found that a substantial number of employers were ignorant about the proportion of their workforce juggling work with care and about its impact on productivity. An increasing body of evidence shows that supporting carers reduces unplanned absenteeism, stems the loss of talent and experience, and improves productivity, as Working Families, Harvard and others have found.
But none of this will work unless we learn to welcome the term ‘carer’, as employers, as workers, and above all, as humans. This entails a culture shift away from viewing carer as a ‘miserable term’, as one research respondent described it – negative, pathologising, a symbol of pain and overwhelm – to understanding ‘carer’ as a social signal we should feel proud to display. By claiming the term and championing our needs, we can push society forward, just as our feminist ancestors did before us.
Follow Emily
Twitter/X: @emilykenway | Insta: @thisisemilykenway | Website: www.emilykenway.com
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