Carers ACT has released a new coffee table book - but it doesn't feature the usual luxurious photography or inspirational prose. This is not a pretty story.
The book, A Call to be Seen, is an honest account about the relentless grind of being a carer and a heart-rending plea for them to be recognised. To stop being an invisible appendage to the person they are caring for, usually unpaid and more often at the expense of their own wellbeing.
During the federal inquiry into unpaid carers, Carers ACT asked local carers for comments and experiences, to inform their submission. One of the key questions was: "What does recognition and awareness mean to you?"
The book captured some of their responses. Many of the comments are hard to read.
One carer said: "Nobody understands the challenge. They say non-empathetic things like, 'have a sleep, it'll be better tomorrow'. When in reality it won't, it will be exactly the same."
Another gave this response: "I constantly feel trapped in my role. Respite care is difficult to access. People who are not carers do not recognise that it is a stressful role or something that requires relief. The awareness of the role of a carer is so little that it is useless for me. Increased awareness about what it is like to BE a carer would be great."
Carers ACT CEO Lisa Kelly says it all boils down to one word: respect. Carers want to be respected.
"The data around the health and wellbeing of carers, it's just - it's shameful. There's no other word for it," she said.
"More than 50 per cent of carers report having low wellbeing. Carers of people with neuro-diversity have some of the lowest wellbeing of any group in the community. That's not okay.
"When you break it down and ask a carer 'What is the biggest issue? The biggest barrier here?', they say invisibility. It's not being seen. It's not being asked about how they are, how they feel.
"They are seen as a vehicle for saving money, for doing something. Rather than as a person in a relationship with someone."
The official definition of a carer is someone who gives care and support to a relative or friend who has a disability, terminal or chronic illness, mental illness or is frail and aged.
In the ACT, there more than 50,000 carers. Fifty-five per cent are women. Most are caring for a partner (20,400), parent (19,800) or a child (14,000).
One in 11 people aged under 25 are carers.
"We've got carers as young as 10 or 11 taking on fairly adult tasks within their family," Ms Kelly said.
"There's lots of great things that come from that and there's lots of impact.
"We know young carers are still not likely to finish Year 12. We know if they are on a benefit as a young person, they are likely to be on that benefit for 20-odd years. Are likely to just fall into carer roles."
Others carers are elderly people who have never stopped having to parent their now adult child. Always wondering what will happen to their child when they pass away.
Ms Kelly said the book A Call to be Seen was about raising awareness of the plight of carers - and finding solutions.
"We'll be distributing it among the MLAs, business, directorates around town, whoever we can, wherever we can to start a conversation," she said.
"Every workplace has a carer. Most families would have a carer. All neighbourhoods would have a carer. All of us would know a carer if we bothered to look hard enough. How can we start to really see the carers in our lives and recognise what they do? And offer help.
"Carers want to be able to work and care. They want to be able to have the use of free time, as all of us do, because that's something they don't have at all. They want respite. They want to be able to take a break. And they want their health and wellbeing invested in as well.
"Carers want to be included."
Ms Kelly said the announcement of a National Carers Strategy was "hugely hopeful".
This week, National Carers Week, the Federal Government announced it will invest $3.8 million to develop a "coherent national agenda" for carers and launch the Carer Inclusive Workplace Initiative to "ensure carers are better supported to participate in the workforce".
"It's about putting carers back on the agenda," she said. "They haven't been on the agenda for a long time."
