Firstly, thank you so much to everyone for your support. Meeting so many kind people along this long and arduous journey I'm on has been incredibly humbling, and I’m deeply grateful for each of you.
I haven’t been able to update for some time because I’ve been struggling to manage my health and stay as well as possible.
I am just one person, and my story is only one example of what so many others are facing. Many people with disabilities don’t even have the energy or capacity to start petitions like I have - they remain weakened by the system, trapped in their beds or homes, or even homeless like me, but without the skills or opportunity to share their struggles.
Right now, I’m still living in a tent, and with the weather getting hotter, my situation has become extremely dangerous. I have medical conditions that make me more vulnerable to heat, and it’s almost impossible to keep food and medication cool.
Tent life has also been incredibly tough. I’ve survived coastal flooding, storms that tore my tent to pieces, and in the recent months, I've been suffering from constant insect bites, causing severe allergic reactions that have developed into infections. A few weeks ago, I counted 72 bites on my skin, and more than half of them appeared infected.
The bites have caused immense itch, pain, sleepless nights, and autistic sensory overload. There are concerns I could be left with permanent scarring - though if this is the case, it will be a silent reminder and testament to the strength I've endured throughout this horrible mess of an NDIS "system".
The hospital gave me bandages and antihistamines, and my GP prescribed two courses of antibiotics and two antibiotic creams. My GP says I need disability-friendly housing immediately and provided a letter of support, but because of a broken system, I’m still stuck at the tribunal dealing with the NDIS and their lawyer - a process that is exhausting and slow, despite the serious risks to my health.
Insect sprays don’t work well for me, and my skin sensitivity and Autistic sensory needs limit my options. Even trying to manage this myself has become overwhelming.
My joints are hurting from sleeping on an air bed for months. I’m starting to forget what it feels like to sit on a lounge, open a closet, watch TV, or even walk into a kitchen. I live out of plastic storage containers in a tiny square tent, with barely any space to roll over at night. I need access to a supportive, accessible home environment... and the NDIS MUST do something about it.
I need urgent support. My living conditions are putting me at serious risk, and some days I don't even have the capacity to talk in complete sentences (or at all) and have had to rely on my iPad for communication with a text-to-speech app.
Please share this update widely - on social media, in groups, anywhere you can. With your help, we can reach 1,500 signatures (We're only a few signatures away!) before the NDIS protest at Parliament House this Monday - and hopefully we can go well beyond that number.
If you have ADHD, feel free to lean into your impulsivity, spam your friends and family and every nook and cranny of social media with this update. Even if people don’t like you doing it, I will sure as hell thank you for it lol.
Thank you again for standing with me and helping make our voices heard. I have never felt so supported in my life - it's incredible the power people have when they come together to create meaningful change and stand up against injustice.
For those who feel worn out and tired from fighting this battle, please know, I am here, and I won't back down from the fight, no matter what life brings my way. I always get back up stronger.
Let's get as many signatures as we can.
In solidarity and strength
Jaz
https://www.jazfromaustralia.com
Calling on everyone who cares about:
People with disability
A fair, safe NDIS
Jobs for allied health professionals and disability workers
STOP THE NDIS CUTS! RALLY – MONDAY 27 OCTOBER
Time: 1pm
Where: Parliament House Federation Mall, Canberra
Meeting point: Road in front of Parliament House Lawns
Join us to send a clear message that our NDIS must be Safe, Fair & Forever.
Speakers include:
Senator Jordon Steele-John – Australian Greens
Marayke Jonkers – Paralympian, former President PWDA
Craig Wallace – Disabled People Against Cuts (DPAC)
Heidi La Paglia – Advocacy for Inclusion
Sarah Langston – Regional Autistic Engagement Network (RAEN)
Gowri Glasson – Australian Neurodivergent Parents Association (ANPA)
Pip Cullen – Nobody Worse Off Coalition (NWO)
Kyle Montgomery – Dharawal Disability Action Network (DDAN)
Mark Pietsch – Physical Disability Australia
Sam Connor AM – Disability Rights Activist
…and more to be announced!
Event access & inclusion:
Wheelchair access
Auslan interpreters (sponsored by Deaf Connect)
Livestreaming available
Low sensory and visual story spaces
Accessible toilets
Family-friendly event
Masks provided
Organised by:
Nobody Worse Off Coalition (NWO) – a joint initiative of:
RAEN | ANPA | DPAC | DDAN | Allied Health Providers
Contact: exec@thisisanpa.org
Event link: Save our NDIS at Parliament - Safe, Fair and Forever!
Hashtags: #SafeFairForever #StopTheCuts #CountUsIn #NothingAboutUsWithoutUs #saveourndis