Joanne

‘We’re not the enemy. We were born. That’s not our fault. And it sometimes feels like that is, like we’re being punished for existing. And I don’t know what the answer is, but I certainly would appreciate feeling more valued, I guess, instead of a burden.’

Joanne is in her 30s and has Ehlers-Danlos syndrome.

‘I am in pain 24/7,’ Joanne told the Royal Commission. ‘Like, right now my feet hurt. My fingers are okay … But I look fine because I have learnt to function at this level.’

Joanne and her husband have two children. Until a few years ago she received a Disability Support Pension.

‘They judged that my husband was starting to make too much money … It didn’t make me any less disabled, but now he’s completely responsible for my care, which is archaic … I’m incredibly lucky, we have a wonderful relationship, but it makes people with a disability completely reliant on a partner for care and money.’

Joanne said that although her husband earns a modest wage, the family lives ‘week to week’.

‘When they took my pension, they took my pension card, which gave me affordable health care. And I go to the doctor on average more than the average person … We are only surviving. We rent because we can’t afford to buy a house.’

When her husband lost his job during the COVID-19 pandemic, the family had no income. Joanne re-applied for the disability pension and was told ‘maybe’ she’d receive it. By the time she’d filled in the paperwork, he was re-employed.

‘They have created this atmosphere where if you are disabled, you have to be alone. Because if you’re not alone then you have to be dependent and someone else has to look after you. And it feels wrong, it feels humiliating.’

Joanne wants to start her own business, but is still ‘too disabled to work’.

‘Which puts an incredible amount of pressure on my family, on my husband, on me, because I would like to work. I would like to be able to contribute or bring in some sort of money and not feel so guilty.’

Joanne said she pays for private health insurance because most of the surgery she needs is considered ‘elective’ in the public system.

‘The public system is not designed for people with chronic health conditions. It’s designed for acute moments. You break a leg, you go to the hospital, they take care of you. But you know, the system is not built to help disabled people. It’s only designed to keep us around.’

Joanne describes her disability as ‘invisible’.

‘My last doctor thought I was a hypochondriac because I kept coming back with more and more problems that I couldn’t solve. And she would say, “Okay, go and try this,” and I would and it wouldn’t do anything, and then she’d say, “Go and try something else,” and by the end of it she just stopped trying because it was easier.’

Joanne is supported by the NDIS, but ‘they don’t help with medications, and they don’t help with doctors or any surgeries or anything like that’.

‘So, while the NDIS does have its benefits, there is still a massive gap that it doesn’t cover either.’

Joanne said the NDIA recently denied her request, through an occupational therapist, for an assistance dog.

‘There’s no reason they shouldn’t approve it, so then you have to take them to the [Administrative Appeals] Tribunal. They pick top lawyers … to defend them at the tribunal. They are spending NDIS money on very experienced lawyers, denying people with disabilities access to aids that they are entitled to according to policies of the NDIS.’