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

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.

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.

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...

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.

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.

Me: Can an #NDIS provider charge me for a 6 hour arts program if I can physically/mentally only attend it for 2 hours? A disability carer and advocate: My daughter loves her day program (not even the same one). You can't expect every business to change for you. Go to somewhere else. I just can't.

Why disabled people sometimes need to use a "luxury" service that is usually for non-disabled people: 1) They are higher quality, safer, less exhausting and better value than using the disability equivalent of the same service. 2) There is no disability equivalent service available. Example:

all i want is to one day own a modest sized home in a walkable neighborhood and raise money for shelter animals. wear an outfit i like, walk to the grocery store, buy some nectarines, feed cats, and live in peace. just don't understand why achieving this is so hard

That some #NDIS participants are functioning well is not an indication of NDIS failings. They aren't fakers. Money isn't being wasted. It means the opposite - the NDIS is doing its job to support disabled people to live their best lives. Remove supports and they'll return to poor functioning.

Note to self: When a dentist says "you'll be in pain for a couple of days and discomfort for a week, take over the counter pain killers", I need to x10. Pain = Excruciating pain Discomfort = Pain that stops you eating normally Need pain killers = Need to request a script for codeine A week = 10

Festivals with no pass-outs or quiet spaces are inaccessible for many disabled people. We often need to go to the car or a hotel room to rest, to take a break from noise, lights, crowds, or do medical-care. It's expensive paying for a full ticket if we can only stay a short time without a break.

That I've heard multiple non-disabled people loudly state that help with gardening should not ever be a government funded support for disabled people is clear evidence that non-disabled people should not ever be responsible for deciding what funded supports disabled people can get #NDIS #Disability

Who's not in the room? Who's voice is not heard at the table? Disabled people who aren't Well connected Well spoken Well available Well experienced Well energetic Well looking Well

I'm still shocked at how many #NDIS STA/Respite Centres: 1) Are double-story. 2) Have unsupportive, non-disability furniture. 3) No mention of infection control. 4) Or what dietary requirements they cater for. 5) Childish, day-long, social-heavy activities. This is harmful to most disabled people

Acquiring a disability or becoming more disabled is expensive! Suddenly most of your furniture, appliances, clothing and sometimes your whole house is no longer suitable or accessible for your body. You have to replace things and buy more things just to maintain basic functioning and independence.

Is not numbing up from local anaesthetic during dental treatment an #Autistic #mecfs or connective tissues issues thing?

Is it really "dental anxiety" or is major dental work actually just another medical procedure that's unnecessarily painful and traumatic for patients?

Someone asked me how doctors need to treat my chronic illnesses differently because of my #Autism. The answer is person-centred, neuroaffirming care: I don't have a "standard" brain/body. So put down your standard assessment and treatment plans. Rewrite them based on my lived experiences and needs.

When doctors and healthcare professionals start a sentence with "most patients..." I need to stop listening. Being Autistic with a rare disease and multiple chronic illnesses, "most patients" is not remotely applicable to me. It is usually misleading and harmful.

The imbalance of disclosure information when you are a disabled customer is WILD. To find out if a hire wheelchair could be delivered in time for my appointment, I had to hand over my: - Weight and height - A copy of my driver's licence - Credit card details - Signed contract I just need a yes/no.

new gender neutral greeting just dropped

A flash of insight about the #NDIS. It (unconsciously) defines disability as incompetence. This explains why participants are: 1) Assessed on what they can't do (incompetence). 2) Given funding for capacity (competency) building. 3) Expected to need less funding over time (as competency ⬆️). 🧵

Addison's Disease is a drama queen who doesn't like being upstaged. "Oh, you are giving all your attention to a severe toothache? No, look at me! I give you: Nausea Headache Exhaustion Hopelessness Increased pain, everywhere Dizziness Tanking BP Feed me more steroids or die!" Complete jerk.

I recently presented at a hospital committee that #NDIS changes were restricting disability supports and increasing stress for disabled people. I warned this would lead to an uptick in healthcare demand. Guess who may not make it to the next meeting because they have proven themselves right? 🫠

There's an assumption that if you've made it to adulthood without knowing that you're Autistic then you don't need the diagnosis or support. This fails to recognise that many Autistic adults are hit with a growing pile of co-conditions. These interact with the Autism, often increasing disability.

As a disabled person, I shouldn't have to: - Go through a special application process - Pay extra - Complain - Campaign - Provide a medical report - Educate - Disclose my disabilities - Get an advocate - Go to a special session that's only on at 8am To do regular activities like everyone else.

Less: Disabled people being forced to apply and pay to prove their disabilities to non-disabled people to get accommodations. More: Non-disabled people accepting that disabled people exist, wanting them to be included, and therefore offering accommodations freely and easily.

Healthy non-disabled people often act like they are experts in chronic illness and disability. This is why they tell us to try yoga. They think they know and are better than us by virtue of being non-disabled. That 👆 is the definition of ableism. Those of us managing it daily are the experts.

I've seen discounts for students, seniors, teachers, nurses...why no sickness or disability discounts? Being acutely or chronically ill and/or disabled is damn expensive and impacts on people's ability to work. We like having and doing stuff perhaps even more so than others because life's shorter.

#NDIS logic: 1) You must get all your disabilities diagnosed, repeatedly talk about exactly how bad they are, and use disability providers who are frequently harmful. 2) We are defunding supports that assist you to cope with the trauma caused by point 1. This is not disability-related 🤔.

Chronically ill patient: I'm too sick to exercise. What should I do? Doctor: Have you tried exercise?

Another post. Another suffering. No content warning. These reminders unnecessary. I well know it. I live it. I live with fear of it. I fight the fear to keep living. Unfollowing.

I'm concerned about the recent epidemic. Back in my day, it wasn't like this. But thanks to social media, some people think it's trendy. It's not. It destroys families. I therefore demand an immediate investigation of the cause of Ableism. Ableists produce nothing useful for our community.

Here are quotes for the exact same Hills Extra Tall Premium Trolley that I need for my physical disability: Lifestyle clothes lines = $96 Bunnings = $65 GMS Rehab = $218 👀 #NDIS needs to be active in removing the "Disability Tax". Help participants to shop around and to report overcharging.

It's been a heavy week. Sending love to everyone xx. Transwomen are women. Transmen are men. Autistic children and adults are loved, valued and wonderful. Late diagnoses of ADHD and Autism is ABOUT DAMN TIME. Violence in our community is caused by but also healed by community; not more violence.

Shit's fucked.

I think that a lot of people have an (unspoken) magical belief that an unlucky few people have a disability spirit inside them that's unlocked by bad behaviour. They don't think they are tainted by this spirit, but just in case, they ward it off by drinking water, doing yoga and working hard.

There would be no need to feel sorry for disabled people if disabled people were actually supported, included and respected by society.

#NDIS participants be warned: Some Planners are telling participants that Support Coordination is no longer funded by the NDIS and these supports have been transferred to LACs. This is misinformation. Try to stand your ground and request the hours you require. If you can, lodge a complaint.

I hate how now internet searches return an impression of matching results: They are no longer a match but match adjacent. If you look through squinted eyes at the results they seem ok but look closely and they aren't what you were looking for. Like ordering fries and getting served wedges.

When people knock back disability access requests, do most: a) Think that we'll still attend/participate and just make do. b) Know that we can't attend/participate, but don't care enough to do anything. c) Don't think about the consequences of their decision on us.