Roxanne
Content Warning: These stories are about violence, abuse, neglect and exploitation and may include references to suicide or self-harming behaviours. They may contain graphic descriptions and strong language and may be distressing. Some narratives may be about First Nations people who have passed away. If you need support, please see Contact & support.
Roxanne is in her 30s and lives with Ehlers-Danlos syndrome (EDS), a group of disorders that can affect the skin, joints and blood vessels.
EDS causes Roxanne pain and stops her doing things.
‘Can you hold two litres of milk? Well, if you held a gun to me, yes, I can do that, but I will cause myself damage, and that damage is both temporary and long-term and if I do that over and over again, I will destroy this body and then I will be unable to do things.’
Roxanne told the Royal Commission that when she was a child she had debilitating pain in her lower limbs. Doctors told her parents the pain was in her mind and not physical. It was only later, in her 20s, after a series of medical issues, that a doctor diagnosed EDS.
‘So you go through your teenage years and up into your 20s and 30s basically … denied, dismissed and being gas lit over yourself. It's just the most horrific thing.’
Even after her doctor diagnosed EDS, she couldn’t get other people to believe her.
‘You get this impression that the diagnosis is the key to everything … you can't get the NDIS without it. You can't get to other types of disability services without it, you know, you can't do anything without it. And you think that when it comes it will change things. But it doesn't.’
Roxanne said the NDIS would only accept a diagnosis from an EDS specialist, but there are no EDS specialists in Australia.
‘They say, well you absolutely cannot access [the NDIS] without a specialist letter, and I said to them, “There isn't any specialists, and literally nobody who can do that for me.”’
She said her previous diagnoses of psychological conditions ‘continue to be weaponised against [her]’.
‘If there was something I could have now, it would be a legally enforceable right to have … those incorrect diagnoses removed from my medical record.’
Roxanne said she spent several years fighting for NDIS support.
‘I said to the man who had done the assessment, “Have you ever heard of my condition?” He said, “No”. I said, “Did you look it up while making this decision?” and he laughed and said, “If I haven't heard of it, it can't be that important.”’
Roxanne now receives NDIS support.
‘They've given me access to the therapies that I should have had for the first 21 years of my life, but I'm trying to improve my capacity with all the physio and all the [occupational therapy] and things that I should have had for decades before. That's what I really needed, you know, because I want to keep the function I've got.’
Roxanne said people still question whether or not she lives with a disability, because they can’t see it.
‘And public transport is a problem for me because people take one look at me and say, “You don't need an accessible seat,” and I've been physically assaulted on trains for daring to sit in one of those accessible seats. An older guy, like, beat me with his walking stick because I was sitting on that seat.’
Disclaimer: This is the story of a person who shared their personal experience with the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability through a submission or private session. The names in this story are pseudonyms. The person who shared this experience was not a witness and their account is not evidence. They did not take an oath or affirmation before providing the story. Nothing in this story constitutes a finding of the Royal Commission. Any views expressed are those of the person who shared their experience, not of the Royal Commission.