When we think of unpaid care work, the more direct and laborious roles of caring for family members with disability, chronic and terminal illness, mental health conditions, or age-based impairments come to mind. We often imagine an older adult — usually a woman — who has legal responsibility for the person receiving her care, and who doesn’t engage in full-time paid work outside caring duties. But what about the people beyond this definition?
Data on these sorts of caring roles are recorded in the census, and it’s usually estimated that people performing them make up around 11 per cent of the Australian population. The same data would suggest that the number of people under 25 performing unpaid care work is around 3 per cent, but as Carers NSW note, the data is likely to significantly underestimate the actual number. That’s because the care work that young people perform is often less definable than that which the black-and-white questions of the census address. Consequently, young people are far less inclined to outwardly identify themselves as carers — a huge contributing factor to support systems for young carers being ill-fit.
When young people perform care, it’s not always limited to the things we might traditionally place in the category, like physical tasks directly related to the person in need of care, such as feeding or bathing (although these, of course, are often a component). When questions within population data collection are written strictly, like the Australian census, the constraints of the questions themselves lead individuals to omit key information. The impact of this type of narrow questioning frequently has the most consequence for young people, as they often fill the role of the ‘hidden carer’, picking up the pieces left behind by the adults who can no longer function as they previously did, and caring for the ones who are impacted by caring for other adults.
There is some nuance in the current data — such as ABS data which indicates that Aboriginal and Torres Strait Islander young people are twice as likely to be carers. But even among this information, what we define as care is limiting our ability to gain real insights through data or statistics.
When a young person performs care duties, it means undertaking the tasks of another adult: cooking meals, cleaning, managing medical appointments, and assisting with family admin. The role that young people take is often an informal one; this is in part because, unlike the resources available to independent adults — such as paying for medical appointments and the petrol to drive to them — the most indispensable resource for young carers is their time, attention, and emotion. It’s an interpersonal interaction, rather than a structural one. Naturally, emotional contributions are less clearly defined.
Picking up duties like school pick-up and drop-off or cooking and cleaning when someone else is rendered incapable, is care work. But because young people aren’t told it is — and because data collection questions fail to represent it — they’re not identifying themselves as needing support. And they’re suffering because of it.
Caitlin O’Keeffe-White is in her fourth year of an Arts/Advanced Studies degree at USyd, with majors in Politics & International Relations, and Gender Studies. At the start of 2020, in her second year of university, her Mum was diagnosed with an aggressive form of breast cancer.
Like many people, she hesitates to call herself a carer.
Caitlin told me that as things became increasingly difficult at home, a lack of support from the University only served to make things significantly worse — she failed all units of her full-time study load the semester of her Mum’s diagnosis, bar one. Later on, she discovered the option to discontinue a unit after the census date without it counting as a failure.
“It wasn’t until it was too late that I even became aware of it,” she told me. “They’re very strict about it [the timing]… I enquired and it was a straight up no.”
For students performing care duties, the impact on their academic performance goes beyond just the loss of time which would otherwise be allocated to study. Unlike a 9-5 job, you don’t get to clock off being a carer.
“I was genuinely running a family of four,” Caitlin said. “Dinners, tupperware returning, washing, cleaning… we couldn’t have additional help because we were trying to limit people coming into the house, so it all fell on my shoulders… [academic support for] that wasn’t covered by the uni.”
Crucially, the emotional impact bleeds into all hours of the day. While there may be what looks like, on paper, adequate time to get university work done, the round the clock emotional or administrative stress can serve as an equal burden.
“It’s the hours thinking about what needs to get done,” Caitlin explained. “What needs to get bought? Are we gonna run out of toilet paper?”
Under the current system, USyd leaves people like Caitlin to slip through the cracks. At the start of 2020, Caitlin organised a session with the University’s Counselling and Psychological Support Service (CAPS), which ended up being a “15-minute phone call from hell.” She explained the situation with her Mum being sick, and the impact it was having on her wellbeing and ability to study — they told her it seemed like she was depressed.
“At that point I was trying to seek some kind of pathway from the Uni, a structural support for me.”
“I didn’t quite fit into a disability support provision, because I didn’t have ongoing mental health issues. The Uni does have carer support, but I didn’t qualify, because I don’t have a child.” A scan of the University website for support available to student carers will mostly give options for childcare on campus. At best, it redirects you to information for primary carers of family members. “Also because I wasn’t the only support — there was also my Dad,” Caitlin said. “I felt like I slipped between the cracks.”
The University’s lack of nuance in defining care is wildly inadequate and causes immeasurable damage. While there are Special Considerations provisions for “unexpected primary carer responsibilities,” there is no academic support plan available for people who perform ongoing care duties. This leaves countless student carers without any form of institutional support.
“I’m not asking for a lot,” Caitlin said. “All I wanted in 2020 was essentially an academic plan. A structure to let lecturers know that this is happening without me having to write individualised emails, because this is quite draining.”
For people like Caitlin, a hindered ability to perform administrative tasks, such as emailing multiple educators with details of why they’re facing difficulty, can be a huge burden.
“I just wanted something to say: hey, this is what’s happening, if she needs an additional week, an additional two weeks, she can have it.”
Situations like Caitlin’s are far more complex than systems like Special Considerations are capable of grappling with in their current form. Caring is inconsistent and varying, and so is the emotional impact of it. There is no one unique ‘misadventure’.
One of the largest issues facing young carers is that — despite performing countless caring duties and shouldering a huge emotional weight — very few of them would identify as carers. This means they’re less likely to seek out support, and more likely to feel alone in their struggle.
Caitlin’s experience of attempting to get support from the University was incredibly isolating: “I felt like I was the only one.”
For students who are carers, living a normal university life and fulfilling academic goals too often becomes a pipe-dream. The lack of structural support from the University that Caitlin received has severely impacted her degree progression.
“I’m definitely not going to be doing honours because of the way that this has panned out, even though that was something I wanted,” she said. “Part of my identity, as someone who did well academically, was lost.”
It shouldn’t be the case that any university student who can do well, shouldn’t do well, or that anyone who wants to enjoy university can’t, due to these — or any similar — circumstances. Support systems need to urgently grapple with the complexity of the caring experience.
Caitlin expressed her frustration at not being able to do the things she used to, such as spending time thinking about her assignments, socialising without thinking about the danger that she might bring COVID home to her family, or the frustration of not simply being a uni student.
“I remember being in a tute and someone’s Mum delivered them cut up fruit in the middle of the class… I was like, if only that was me, I would be able to do well,” she said.
The social, academic, and emotional impacts of caring that she experiences are not uncommon — despite what reporting such as census data may suggest. Leaving people to slip between the cracks does real-terms harm beyond what current statistics or definitions are capable of encapsulating.