Graphic by Naushaan Ahmad
CW: discussions of suicide, addiction, and mental illness.
In the ACT, a carer is defined as a person who provides personal care, support and assistance to another individual who has a disability, a medical condition, a mental illness, or is frail and aged. A person isn’t a carer if they provide care, support, and assistance as part of paid work (i.e. support worker), as a volunteer for a charitable organisation, or as part of the requirements of a course of education or training.
At the ANU, many students juggle university with our role as a carer, but the responsibilities we hold and unpaid labour we do often remains invisible. Much of this invisibility has to do with the way in which caring is gendered – the unequal distribution and devaluing of caring responsibilities is linked to social institutions and stereotypes that reinforce gender roles and see women spending two to ten times more time on unpaid care work than men.
In these interviews, I sat down with some women at the ANU and tried to explore the difficulties they face in navigating life as a woman and as a carer. I want to acknowledge that the positions these women occupy, often on the margins, can be incredibly hard and taxing, but also incredibly diverse. Gender, culture, language and class all influence the way in which we care. This is the first interview of a two-part series about the experiences of women-identifying carers at ANU. The second part of this series can be found in the Semester 2, 2018 print magazine.
Molly and Isla
What year are you in and what are you studying?
Isla: I’m a first year and I’m studying a Bachelor of International Relations and a Bachelor of Medical Science.
Molly: This is my fourth year and I’m studying a Bachelor of Arts and a Bachelor of Economics.
Who do you care for and what are your caring responsibilities?
Isla: I care for my three brothers, who all have moderate to severe autism spectrum disorder. My main role is as a secondary carer, and I help my parents when I’m back home with cooking, cleaning, transport, divvying out medication and respite for my parents. A central role of my caring responsibilities is to provide distraction for my brothers and separate fights, but now that I’m away from my home I’ve become a bit more detached from that role. I still care over the phone and provide emotional support to both my parents and my brothers. When I go home it can be pretty hard to resume a full on role…uni is my break!
Molly: I care for my sister who has borderline personality disorder (BPD) and everything that comes along with it – post-traumatic stress disorder (PTSD), anxiety and depression. She’s five years younger than me and when we used to live at home my mum was the primary carer. But now my sister has moved out and lives with me so I’m the primary carer, and support her emotionally, with school, cooking, housework, appointments and just general life admin.
We often talk about the gender pay gap in terms of women having children and leaving work, or women being employed in lower-paid feminised industries. We talk less about the unpaid care work women do for people with disabilities, making employment hard and causing financial disadvantage. Do you feel you’ve experienced the gender pay gap in this way because of your caring responsibilities?
Molly: Yes, definitely! I work part-time and study at uni, and on top of my caring responsibilities I would not be able to do anything more. I’ve seen the pay gap with my mum too. She had to step down from her full-time job to care, given my dad doesn’t contribute.
Isla: I only do casual work at the moment, but like Molly said I’ve definitely seen it for my mum, and even my dad. They work full-time and often will be late for work or have to leave early because of an emergency, and employers really don’t like that. It can be really jeopardizing.
Molly: Totally, and it affects your relationships with co-workers too. Often you can’t participate in social activities at work, like staying for drinks afterwards, meaning you miss out on that connection.
Isla: My mum has just started her own business with the NDIS and even that is such a struggle because she’s working every single day on her own, but also caring at the same time. She might have to press pause on a meeting or something because one of my brothers throws a shoe through the window. It can be really hard to watch, because I know she’s so driven.
For myself I often find I might have to call in 5 or 10 minutes late for a shift because I’m dealing with a caring crisis. It’s hard and creates a lot of anxiety because I need money. I want to be able to socialise and be able to fund that social life, but sometimes I can’t physically get in to work, and finding employers who are willing to compromise is a struggle.
Molly: I also worry a lot about how employers will view my caring role – if they know I have this responsibility that might get in the way of work, will they even hire me?
How do you navigate the way in which care work is expected of women? Have you felt pressure to look after the person you’re caring for more than the men in your family network?
Molly: I find it really hard to navigate.. It’s hard to explain yourself and your caring role, and I get so tired. I don’t get time to go do stuff I want to, and when I do have some spare time I’m just too tired to do anything and need that time to try and recharge.
Isla: Yeah I have to explain to my friends all the time why I’m not going out on Thursday night or why I can’t come and socialise. Sometimes I’ll even tell people I’m studying as a way to get an hour or two to myself to recharge. The repetition of it all is exasperating! I’m tired all the time. I mean, as if uni and work isn’t tiring enough, it can just be too much continually adding caring issues and crises on top of that.
Molly: I work off mental lists and am always spending so much time interacting with bureaucracy and ringing people, which can be such a mental burden. I recently helped my sister complete a police check for a job she was applying for and it was so much work having to constantly follow up different people and agencies! When this work stresses me out or makes me exhausted, a lot of the time people around me who know about my caring role, tell me to “take some time for myself” – it’s frustrating but also a bit hilarious! I don’t have the time or money to take time out for yoga or any other ‘self-care’. The pressure is immense, my mum and I have always been the only options, and now that my sister lives with me if I don’t care for her then it won’t get done. There’s huge pressure to not only care for her, but to be a good carer and look after myself which is nearly never possible.
Isla: It’s like there’s this stereotypical carer – they always get things done, they take phone calls and manage things and do all this amazing stuff, and still manage to go to work and having a lovely relationship with their employer, and spend 2 hours a day of ‘me time’. It’s a utopia where caring is no longer a massive burden! Of course, there are positives in my caring role all the time, but there’s a huge burden placed on me by the situation, and I feel pressure to be more than just a carer, I have to be the perfect carer.
Do you often feel stereotyped as a woman and as a carer? Do you think people see you as someone who is just kind and nurturing, rather than someone who puts in hours of emotional and physical labour to look after someone? Does this view diminish the intensity of your work?
Isla: I do get that. I experienced it especially during high school because I did some advocacy there. People thought that I was so kind and gentle, when I’m really not. I mean, I grew up with three boys and we joke that I have more testosterone than all three of them put together! I’ve definitely seen and experienced that stereotype at home as well. There are days when my mum is caring for the boys and they’re more aggravated and scary than if they were with my dad, and the onus is on my mum to stay gentle and nurturing. Often people see their disabilities as a reflection of my mum’s mothering skills and stereotype her, it can be really upsetting.
Molly: I haven’t used the terminology of being a carer until this year when my sister got a diagnosis and I haven’t really analysed it before, so maybe the stereotyping is less overt. But even though I’ve only recently adopted the term carer, what I’ve been doing has been caring, and people have diminished the work I put in. I’m new to the whole thing, but definitely agree that it’s super feminised.
Have lecturers ever responded badly to you as a woman and as a carer?
Isla: I haven’t had to deal with it much at university because I’m not with my family in that more intense caring role anymore, and I’m thankful for that. But definitely in high school I experienced it. My teachers would just say I’m “so lovely”, “so kind”, and “so gentle” instead of giving me the support I needed. As soon as I told them I was a carer, because I was a woman it was like the whole situation changed and became gendered. I doubt a man telling a teacher the same thing would be treated that way.
Molly: I only talk to people who are really close to me about my caring role, otherwise I just shut up and get on with it and do what I have to do. So I haven’t ever really told my lecturers, probably out of fear of them not understanding or having bad reactions.
Do you find your caring role seeps into your other relationships? Do you do more labour for your friends, your partners and other people in your life because you’ve taken on this ‘nurturing’ carer identity?
Molly: Oh totally! My caring role has always kind of rolled itself up into my role as the eldest daughter and seeped into my place in our family. I’ve also had it seep into my relationships with partners as well – I end up mothering a person and it’s not healthy for either of us. It’s just a natural responsibility I take on now, whether it be automatically doing the cooking or cleaning or providing heaps of emotional support.
Isla: Yeah, I feel I have lots of residual stress and because I’m super organised and follow strict routines I can be very controlling. When my friends do stupid things or act irresponsibility I find it really hard to let go of that overbearing nature, but it’s tough because when I go home I need to be that controlling person.
Molly: I feel we’ve just learnt to have a lot of emotional intelligence. It can be kind of a vicious cycle too, having it seep into relationships and friendships, because I’m so fiercely independent now and do everything for myself that I struggle to let other people care or do things for me.
Isla: I struggle with that too, it can be really hard to navigate providing and receiving emotional support from friends. A lot of my friends don’t want to add to my burden and see their problems as less serious than mine, so won’t have open and honest conversations with me or let me support them – it’s super patronising and frustrating! And then when they do feel comfortable opening up with me, I might be too tired or distracted by my caring role to support them properly. It’s a double-edged sword really.
Molly: I feel really lucky, I have one friend who experiences chronic pain and she just gets the way in which disability or caring can hang over you. But it’s very rare to find somebody who understands and who is capable of that empathy.
How does your identity and role as a woman and as a carer overlap for you? Are they both equally important in constituting who you are now?
Isla: I think in terms of being a woman and a carer, I’ve kind of learnt to separate them and I like it that way. When those two identities mix and overlap the stereotypes start coming in. For instance, when my friends first meet me they know me as a quite confronting, really brutally honest and sarcastic person. And then you throw my caring identity in there and suddenly there’s this vulnerability that undermines that, just because I’m a woman. People think “oh it’s all good, Isla’s got a softer side because she does all this caring stuff.” But it’s not like that, I’m still brutally honest, just maybe not as brutal depending on who I’m talking to or caring for.
Molly: The way these identities overlap is all structural to me. I think the bad experiences I have had as a woman and a carer have not been in interpersonal situations, but when dealing with bureaucracy and systemic issues. We need to do better to value women’s work. It’s expected that a caring role comes with your identity as a woman, and that you have to make sacrifices to fulfill it. Changing these perceptions is really important. More understanding of people with disabilities and their carers might change the way these identities are created.
What do you want people to know about being a woman and a carer?
Molly: From a policy perspective, we need to change so much! A paid parental leave system would set up some good groundwork that we could extend to carers. I just wish people would understand that what you do as a carer is socially beneficial, we make such a contribution to society. We don’t want people in inpatient care or being institutionalised, so as much as possible we need carers to support people to live normal lives. Even though it’s not paid work, the economic contributions we make to the economy – nearly $13 billion a year – is just phenomenal. But people don’t see it like that.
Isla: Can you imagine if every unpaid carer went on strike?
Molly: Like in Iceland when women went on strike and got equal pay!
Isla: Yeah, it’d be interesting to see.
Molly: From a long-term perspective, it’s just not sustainable for us to be doing all this work. We could do so much better in terms of supporting carers, and ensuring people with disabilities have the level of care they need if we valued feminised labour.
Isla: Yeah. One thing I also think is needed is more bureaucratic recognition. There’s always so much you have to prove to get support, you have to prove you’re doing all this stuff and caring for this person in this way. A lot of the time it feels like you’re not recognised at all, you’re invisible. Nobody really knows where to put you or that you exist. I really wish that would change.
And I think too it’s really important we distinguish between the care people put in as part of normal functioning relationships, friendships and families, and then the extra care we put in in supporting people who have disabilities or might be ageing. The distinction matters.
Support is available:
Carer’s ACT: 02 6296 9900 (9am-5pm, Mon-Fri)
Carer Support Services: 1800 052 222 (9am-5pm, Mon-Fri, also monitored after hours in case of emergency)
Young Carers: 1800 960 990 (9am-5pm, Mon-Fri)
Commonwealth Respite & Carelink Centre: 1800 052 222
ANU Counselling: 02 6125 2442 (9am-5pm, Mon-Fri)
Lifeline: 13 11 14 (24/7)
Canberra Rape Crisis Centre: (02) 6247 2525 (7am-11pm) – counselling for those affected by sexual assault, with a dedicated counsellor on campus
1800 RESPECT (24/7): sexual assault and domestic violence counselling and information
The Suicide Call Back Service: 1300 659 467 (24/7) – free phone counselling for anyone affected by suicide
The Crisis Assessment and Treatment Team (CATT): 1800 629 354 (24/7) – assessment and treatment of mentally ill people in crisis situations