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What we should really be fighting for during National Carers Week

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Browsing the official website for National Carers Week is an exercise in feeling uncomfortable. Because while of course it’s notable that there are 2.7 million unpaid carers in Australia, most of them women, as a person with a disability, I can’t help feeling that to celebrate the work of carers in such a way is to miss the point entirely.

The best thing we as a society can do for both carers and their charges is to make unpaid caring redundant – a move which would require us to stop making inspirational martyrs of caregivers (as our media is wont to do), and embrace a shift in values toward supporting the full autonomy of disabled people, independent of their families.

My friend Nicole recently gained access to such autonomy via the NDIS.  In her mid-twenties and living with her dad, Nicole needs assistance with dressing, washing, transferring from bed to wheelchair, using a toilet and tasks requiring dexterity or lifting.  

Where Nicole previously depended on family, and was obliged to fit into their schedules to a degree, she now has a rotating roster of paid support workers whom she recruited herself and manages through a facebook group.  Having the power to choose who helps her with which tasks and when has enabled her to achieve new levels of self-determination.

“Parents that are also carers can get very, very fatigued,” she says, “and that can come out in the way that they act. I’ve had situations where I put a top on, and then I wasn’t happy with how it looked, so I asked my mum to change it, and she’d be like [long suffering sigh], and that was very understandable.  I think that’s something that all teenagers go through, wanting to change their clothes … but because they don’t need help, nobody notices.

“There were times when I’d had an argument with my mum, and I’d just slammed the door, but, oh, by the way, I now need your help to go to the bathroom … and there’s no break.  I couldn’t say, oh I’ll just go out for a bit, or you’ll just go out for a bit, and we’ll have space, because my disability didn’t really allow for us to have that space.”

Having paid support workers tackling the same tasks with professional enthusiasm makes a positive difference.  It’s also allowed Nicole to set healthy parameters around her familial relationships.

“I want my dad to be my dad.  I don’t want him to worry about, you know, how my hair looks, and neither does he … he doesn’t mind giving me a shower, and on the odd occasion when he has to now, he definitely will, but it’s kind of nice to have girls help me shower rather than my Dad.”

Nicole’s is an NDIS success story where all involved – Nicole, her family and her support workers – have full access to properly paid employment and personal autonomy.  However, with the Turnbull Government proudly announcing savings of $1.1 billion on the scheme and concerns over lower than expected supports and restrictions in eligibility, it’s clear the success stories are not yet the norm.

Ariane is 25 years old and lives with her twin sister Amorette, who also acts as her carer.  Her physical needs are similar to Nicole’s and compounded by an anxiety disorder, making self-management untenable, yet the NDIS has barely provided her with enough support to get her in and out of bed each day, and she has very little access to the community.  The bulk of care work still rests with Amorette who relies on a carer’s pension to survive – approximately $7.50 per hour of caregiving – whilst also attempting to study and work part-time.  Exhaustion has become part of her routine.

Both women are struggling to cope, financially and emotionally, and both worry about the impact the situation is having on the close relationship they’ve always shared.  “It’s definitely changed the way that we relate to each other,” says Amorette.  “We both get stressed, we both get uncomfortable, and it’s upsetting … and every time we think we’re getting to the light at the end of the tunnel, independence for me and Ariane, there’s another roadblock.”

Things became particularly dire earlier this year when Ariane went to hospital with suicidal ideation.  “I got to the point where I wanted to put my own life at risk, so my family didn’t have to spend their lives looking after me, because I felt like a burden,” she says. When told of the announced savings on the NDIS rollout, she grows angry.  “They do not care.  You’re a number.  You’re not a person.  You’re a code.  You’re a situation.  You’re not actually people.  They’re putting people’s lives at risk.  

“I’m 25, I can’t get a job, I can’t contribute to society like I want to – like it is my right to – because the government can’t be f—ed.”   

Being able-bodied is a temporary privilege, and whether by accident, illness or age, most of us will need caring for before it’s over.  So during National Carers Week, let’s ask ourselves, do we want our care resting on the shoulders of an unpaid, exploited, stressed, unregulated workforce that relies on gendered expectations of labour and functions at the expense of women and disabled people’s wellbeing?  Or do we properly invest in a system to maintain our universal dignity, autonomy and quality of life?

If you are struggling, please call Lifeline on 13 11 14.or visit lifeline.org.au or beyondblue.org.au.

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