Charlie Park

Yes, I've considered whether the brain fog and cognitive symptoms in ME fit as a type of neurodivergence.

I grew up with mum playing this cassette in the car on repeat. Great choice Australia #hottest100

*HUGS RADIO* thanks friendo #hottest100

I'm terrified I'll be rage quitting the radio on hearing number 1 #hottest100

Nose Bleed!!! Banger #hottest100

Wanting:
Zebra, John Butler Trio
No Old Man River, TISM
Purple Sneakers, You Am I

#hottest100 but don't like their chances

No idea about the top 5 #hottest100. Feeling nervous.

We lose so much of ourselves 💔

When explaining who I am, it's hard not to say "before disabling chronic illness, I was a psychologist, dancer, traveller, cook, yogi, swimmer. Now, I am sick with a side of disability advocacy."

There are two lives, people, identity sets - before and after. After is murkier and harder to explain.

It's really hard getting people to understand that:

Yes, I can physically do a thing, sometimes even easily in the moment but

No, I cannot do the thing because of catastrophic consequences on my health afterwards that they'll likely never see.

Having disabling chronic illnesses is a constant existential flip flop between:

"I must do everything possible to protect my precious, fragile health."

And

"F*** it, my life is painful and short, so I might as well eat all the pizza and dance while I can".

Disability Support Provider: "We support the NDIS 💜".

Me: Not disabled people? 🤔 Well, that tracks.

If NDIS funded equipment is unused (for whatever reason) it's up to the participant what they do with it.

I don't think there are NDIS guidelines.

There are FB groups to sell stuff.

It would be fantastic if secondhand equipment was checked and given to disabled people who cannot access the NDIS.

While we are at it: The NDIS needs to set up a recycling scheme for equipment.

The NDIS really only funds new equipment and takes no responsibility for the equipment after purchase.

Imagine the headlines if I accidentally drove my NDIS funded scooter into someone's BMW and I had no insurance to cover the damages.

I don't understand why 3rd party insurance isn't mandatory. I don't understand why the government isn't concerned about this.

I cannot get over how the NDIS does not fund insurance for mobility devices.

One step further: Why don't *they* organise and offer comprehensive insurance for all funded equipment?

It would be cost effective, help to ensure quick replacement of broken equipment and is the responsible thing to do.

*sigh*

I think that I broke in September/October last year, when the NDIS Bill went through and disability advocates were not only ignored but mocked.

NDIS Therapists: Pricing changes are the straw that broke the camel's back! We need immediate action!

NDIS Participants: Welcome to the party! Can I introduce you to Plan Cuts, Lists of Supports, Funding Periods, Eligibility Reassessments, Pre-Payment Audits, ambush planning meetings, debts...

Flu = Oh shit!
GP unavailable = Hate this new shit
GP cost = Ridiculous shit
Med cost = Also super shit

Hope that shit works 🤞

My meal prep worker cancelled their shift at short notice (COVID).

With the new #NDIS Lists, I can no longer claim a rebate for smoothies and sandwiches bought from my local cafe because junk food is bad man.

My partner is currently cooking meals for the week while at work and caring for me 🙃.

My new article about the WILD experience of using disability services for the first time.

Before RAT tests, I would have thought this was "just a cold" and followed the standard Sick Day Plan to do nothing 👀.

It probably explains why some past "colds" -> low cortisol symptoms.

PSA for people with #AddisonsDisease: If you have cold symptoms, it's worth doing a combo COVID/Flu/RSV RAT test.

I've tested positive for RSV. I'd never heard of it before. It can cause pneumonia, fever, dehydration 🚩.

I'm Sick Dosing, upping fluids, monitoring vitals, resting.

WTF?! Surely he's messing with you.

Right?!!! I'd require a bed, recliner chair, TV, 4 meals, 2L of electrolyte water and a couple of medication boxes to even start to get through that 😂. And look, I enjoy making art but not for 6 hours at a time 😵‍💫.

I think that people really struggle with the concept of time-based disability accommodations. They seem to think that are entitled demands that will dramatically inconvenience everyone else.

When in reality, they are often cheap, easy to implement and have min impact on others.

When I asked the community centre if I could attend and be charged for half a session, they said "but other artists want to stay all day". Same argument as the advocate.

It's the equivalent of requesting a ramp and being told "but others like to use stairs" 🤦.

I think that the whole purpose of disability advocacy is to fight for all disabled people to participate fully in life. It's rewarding helping others, sharing and caring.

I don't understand and get dismayed at the jealous, fearful, resentful, hoarding vibe that some people bring to this work. Yuck.

And yeah, I think they should accommodate my needs and have fair pricing.

Especially because this is a disability program at my local community centre. Who else will accommodate?

There are easy solutions here too - like offer a pair of half day spots in the day program (kind of like job share).