Article
As a person with disabilities who doesn’t qualify for the NDIS how do you afford accessibility devices?
You swallow your pride and you put your hand out.
I used to be a web designer who worked for herself and ran monthly, in-person meet ups for solo business owners in my area. I used to take my kids to homeschool get-togethers in bowling alleys, parks and pools. I used to be able to choose when or if I left the house and do it fairly easily.
Then Covid hit and after that I was diagnosed
with rheumatoid arthritis.
Swollen hands and feet put the end to… almost everything.
No quick catch-ups over coffee, no park plays with the kids and certainly no wanders around the shops just to look at what’s on offer. The last time I left the house for anything other than a medical appointment was a bit over two years ago and that left me in pain and exhausted for days.
The thing with rheumatoid arthritis is that there are a dozens of medications to try and not all of them are going to work. So you try a few. Sometimes they make you sick, make your hair and teeth fall out but sometimes, if you’re lucky, you’ll find one that’ll reduce your pain and lets you walk to the toilet without tears and maybe even have a bit of a life.
Some people even get to go back to, well not a “normal” life, but something a bit similar to what they’ve had before.
The sad truth is, even if you go into remission (when your disease is properly treated) your post-diagnosis 100% isn’t going to be anywhere near your pre-RA 100%. You’ll have bad days and flare ups and any damage your immune system has done to your joints will still be there to scream at you when it thinks you’ve over done it.
When you’re not properly treated it’s even worse.
I haven’t found my magic pill just yet. I’m currently living on high doses of prednisone and relying on my children to help me do basic tasks - there are some days when I need someone to put my morning coffee directly into my hands because 500 ml is too heavy to pick up.
Without sounding too “woe is me” this could be me for years. Living an incredibly limited life, trapped at home, without any kind of support because my disease isn’t “stable” and I can’t afford to self-fund (who can?).
That’s why, earlier this year, I started a GoFundMe to buy a mobility scooter. I want to be able to have a life again. Take my train obsessed kid on some public transport or even just pop to the shops for a loaf of bread! I want to have a choice, maybe even get a job.
Relying on the kindness of strangers is the only way I can make that happen and that is all kinds of dehumanising. Begging on social media because the government doesn’t see the value of supporting people like me is… I can’t find the words to describe it.
Long story short. There needs to be something that fills the gap between what the NDIS and state based subsidies will fund and leaving people to their own devices. It’s not good enough to leave the rest of us out here fending for ourselves.