Currently waiting for my new washing machine to arrive. But that’s cool, apparently we’re the next delivery and since they gave us a 3 hour window it’s been pretty easy for a Sunday morning.
Waiting for mum to get an aged care bed. Waiting for her to move to a different hospital to wait for that so she’s not in a depressing dungeon ward with old men dying across from her. The staff are lovely but she really needs to get out. She has a loaner wheelchair so we can take her into the fresh air each day for coffee and a break. Trying to not feel guilty for staying home today but also telling Dad to stay home and rest because he’s really not well and we’re now waiting for his Haematologist appointment on the 24th. His white blood cell count went up again since his last blood test. Mine are normal though. I did bloods last week and they’re all normal.
Waiting on Bruce’s colonoscopy. We’re been waiting 4 months, been told to expect 6. Waiting for mum’s wheelchair of her own. We were waiting for Dad to say okay to building a ramp to the house so mum can at least visit. But he’s said yes to that at least. Now to get him to okay us going to buy a wheelchair friendly mini van.
Feeling a bit like Tweek from the 2016 South Park where President Garrison is threatening North Korea and cupcakes don’t solve the problem but I’m here making cupcakes (or muffins or whatever I throw together) feeding myself, feeding others and just trying to get through the days and weeks.
So, the Treasurer says the budget isn’t finalised, while preparing the ground for cuts to the NDIS, while disabled people just want to be supported to live. We want access to pensions that cover the rent and health care and food. We want governments and financiers to stop with the narrative of rorts, and perhaps approve the supports we know we need and know would make disabled lives worth living. We want some certainty.
I want aged and disabled care plans determined by qualified people, not an algorithm. I want the NDIS to stop fighting people who are just trying to survive. I want to know that my mother will be able to go back home after her stroke and get more than maybe one shower a week. I want to know that while I’m probably going to be my mother’s main carer, I’ll have support and equipment and extra paid supports as needed to make that a sustainable an safe undertaking for us all.
I want us to not suck up to genocidal presidents. I want to stop reading that it’s been x hours since a ceasefire started in an article about a town being bombed in Southern Lebanon.
I want a lot. Or not very much if you look at it as just wanting a rich country to support its people to live happy, healthy and dignified lives. That involves housing and welfare for all, adequate and safe disability and aged care. That involves being able to go to the GP when I need to and afford the medications I need to sustain my mental health.
I’m very much still running day by day. There’s equipment trials and a family meeting for mum on Friday. There’s helping my sister out so she can take care of her own mental health beyond what the NDIS will support her and her kids to. There’s walks with my dog and dinner and snuggles with my partner to sustain me. There’s a new Hello Kitty Island Adventure expansion pack and a mochi cafe to run. It’s about balance.
It’s okay, my capacity isn’t yet screaming at me to stop – I’ve been managing myself alright given the other things I’ve taken on. But the little twitch in my left eye this morning was telling me to slow down a little.
Ness often talks about the difference between having capability and having capacity (but damned if I can get my head around funding a good post on her blog or socials, let’s see if I can come back with one) in the context of work expectations, but also in what can be supported for disabled people.
Like, I was asked if I’d be presiding officer for the HSC exams at the school I’ve been supervising at for 2026. Yes, I have the skills needed. I might baulk at some of the people management stuff but I can do it. But I know I simply cannot sustain that level of work – not even counting the lead in time and prep – of 12 hour days for the four weeks, with the responsibility of making sure those 150 kids get their HSC delivered, AND not go insane or crash out or something less dramatic but equally threatening to the delivery of the exams and my long term well-being.
So I declined. Which is the right choice. Given that even the 2-3 days, some half some full, I’ve been doing, with days off in between is more than enough for me. I’m thriving off doing it – I like being able to be responsible and capable and respected for my skills and being able to train and support other staff, but an unofficial 2ic role is more my speed than taking on the whole thing.
It means I can also still function outside of that – once I recover from the day of being “on” and do the other things I want and need to do to look after and be with myself and others I care for. Which some have needed more of lately. Which is all good, and I feel useful and closer to them for it. But again, balance and capacity need to be respected. And I need to be in charge of that for me because I know me best and can regulate me best.
Just sorting out my meds this morning, making sure I’m ready for another week. Looking after me so I can look after me and then look after others.
We lost another community member.
David’s death is at the hands of the politicians who talk about helping others but leave them in the gutter. That put maintaining the status quo of more investment properties for themselves and their mates over having a public housing safety net for all who need and want it. Who want to make sure that the NDIS is seen as tough and efficient but can’t get back to applicants with supports and then make them reapply all over again, but oh look there’s another barrier because a report is now out of date or their drivers license is expired and so they can’t make ID points.
I’m tired and angry and sick of all this and it doesn’t have to be this way but those in the powers that be in governments and social services keep it this way.
Like, is this a good news story from the weekend? Daniel was repeatedly and illegally cut off his meagre welfare payment, surviving off the small amount his father was able to give him to pay for his medications. Daniel was made homeless by an uncaring system that can’t even get his own processes right. Daniel is getting nearly three years back pay – but that is only $52k. And he held off revealing his story until that was paid because through fear it would be withheld by a system that’s known to dish dirt on the poor and vulnerable to protect its own image and keep its system working.
They have learned nothing from Robodebt except that they can get away with it. That Daniel and David will be blips on their radars, that no matter whether it’s the red or blue team they can sweep them aside and keep their jobs or move into better ones. Royal commissions and NACC mean shit when Scotty’s got a new job and Bill Shortens robot got binned but people are still out there dying because the “Welfare” system doesn’t care about the welfare of the worst off.
Kylea Tink is Foodbank’s new CEO. You may remember her as a teal independent, but now she’s pretending to make a difference by expanding the amount governments and individuals spend on food relief – on the food itself, on the warehouses, the trucks, the fundraisers and the branding. Oh the branding. She joins former NSW Premier John Robertson who’s the NSW CEO. Because we need multiple layers of CEOs.
They’ll put out press releases about how many are going hungry and how you too cold help out by giving their particular organisation (or OzHarvest, or Second Bite) money to fund x amount of meals or a food hamper. These press releases rarely mention that this poverty is manufactured by supermarkets that would rather over order and over change and feel good donating excess stocks than running their businesses at slightly less profit but still making a motsa and not creating food waste. Or the politicians that give another grant for another warehouse, another charity another photo opp to support the needy, but could lift so many out of this situation with a nimble piece of legislation that lifts welfare payments above the poverty line. Or at all levels buying and building public housing (States and Federal and even local councils) so that people can be immediately housed rather than renting hovels through layers of community housing providers that don’t provide guarantees of tenure.
Poverty has risen over the three years of a Labor government, and people are dying. People are dying because they’re being left behind. They’re not able to afford to feed themselves properly or to attend to their health care – people can’t afford to go to the doctor or to buy the meds their need to stay healthy. NDIS is cutting supports that are working for people while telling us that no, noone’s losing supports and here we are losing our minds. Being house should be a given but relying on the private market when public housing has ten year wait lists and crisis accommodation is two weeks in a seedy mote with a dozen others at the worst points in their lives is certainly not helping anyone.
It’s a thousand straws on each camels back, and they all carry so much weight. People can’t do it alone but too many are forced to. And they struggle on and if they get the hand their need to make it through they just might. Is that hand going to be on a case by case basis from and for an individual or will our governments actually step up to provide the supports that people need? To everyone?
So I’m going to take my meds that I’m blessed to be able to afford and stay strong for myself so that I can look after myself so I can look after others.
In terms of mental health numbers, in NSW I’ve found the mental health helpline useful for support for myself and others. There are other services and ideas listed on that page. Lifeline also has sms and online crisis chat in certain hours as well as the usual phone – 13 11 14.
Ahh, well, that was a little disappointing. I remember last election, when Labor got in my mental health nurse saying “you must be happy with that result” and I was extremely cautious in my response, feeling like I was expected to be happy, but very much wanting to wait and see how it panned out for me and the causes I care about.
It all started here.
Growing up, mum was in and out of hospital. Rheumatoid arthritis crippled her joints and she was on the invalid pension.
We lived in public housing. And having a safe, secure roof over our heads meant everything.
The night before this weekend’s election, Albo wheeled out his childhood and how that set him up for success, and boy were we cynical in response. I mean, Labor has not helped people like his mother at all. Public housing is barely a thing and dwindling slowly. Yes, there may be “social” housing builds but the rent is higher and the conditions less kind to tenants. DSP and other pensions have not gone up this term, despite Labor members claiming so. The only increase in them has been due to legislated inflation and much of that because inflation was so high when Labor came in.
The $20 a week that Jobseekers and Youth received is long gone and was less than the previous governments increase ($25/week) in real dollars.
Rent assistance for those 14% of welfare recipients who get it has gone up to a whole $100/week max with those two “real” increases this last three years. It still isn’t giving people access to private rentals in this country, with Anglicare’s latest snapshot showing someone like Albo’s mum (who would have been unlikely to get DSP for arthritis these days but would have benefitted from Labor reinstating single parent payment for kids up to 14) not being able to afford any private rentals in the greater Sydney area.
So, on Saturday night I had two reactions, one was disappointment and skepticism that Labor will do anything progressive with their second term and continue as they have the last three years – fiddling around the edges, saying they can’t be too bold, working with the LNP to pass watered down legislation like the NACC through the senate. The other part of me wants to be hopeful that the “just give them time” people actually were right and they will actually be bold this term because they have no opposition to fear losing to. (I really don’t believe this but I WANT to be proven wrong about this for so many reasons)
"If we were going to make changes, then why haven’t we?"
— 💜 phonakins 🍉 speak because your voice shakes (@phonakins) May 1, 2025
Our work here has barely begun. We saw the glimmers of hope that there was becoming enough glaring evidence before the election that the suspensions to payments and compulsory activities for JobSeekers and younger disability pension recipients were illegal as well as useless and expensive to administer for few positive and many negative impacts.
Something needs to give – payments needs to be raised above the poverty line. The country can “afford” it, it won’t impact your precious inflation in any significant way, and the benefits to the health and happiness of people should be enough to sway even the most miserly. It’s the right thing to do.
There ARE easy fixes, and the government has the evidence it needs to implement them. It just needs to want to do it and stop sacrificing the poor.
6 weeks until the People Against Poverty Summit. Trying to get my rest on so I can get back into helping with preparations and be able to travel u there for in and a few other things we may plan for the week before or after. I worked Friday and Saturday supervising exams which rekt me and gave me a cold, and I’m trying to remind myself I made the right call to decline working the Sunday at the last minute even though the money would have been great it would have knocked me out for the week for sure. Pacing pacing, both physically and socially – it takes a lot out of me.
There was a pre-conference online session last week on running a street kitchen – given the despair some a feeling it’s worth a watch if you want some ideas for help to help people practically in your immediate community.
If you’re in a position to help us with the costs of getting people in poverty to the conference, consider donating here. Or if you’re able to host someone from out of town or want help to attend, check the linktree.
