It’s been a shit few weeks. Months, really. My health has been irreversibly fucked up by my ill-fated trip to Geelong, yet I’ve still had to deal with every crisis life wants to throw at me.
The most challenging of these is my NDIS application. I knew it would be a terrible process, I knew they would rip the humanity straight out of me, but there’s a difference between knowing and experiencing the utter degradation of dealing with completely uncaring bureaucrats who seem to derive some sort of bizarre pleasure in humiliating their subjects who come crawling to them for help.
I’m still in the process of my internal review (appeal of my initial rejection, or as they like to call it, “access-not-met”). It’s been an absolute fucking grind just trying to get them to look at the information I submitted for review, let alone assess it. Months on, and the furthest I have got is a bizarre phone call offering an apology for a letter from Jan 2017 which was never sent – before the NDIS worker realised they had rung the wrong person, and divulged potentially sensitive information about another applicant’s case. They hung up on me.
Shortly after, I answered another, far more depressing call from the original “decision maker” who rejected my application. Their reasons were spurious and infuriating, and it was eminently clear from that conversation that the “decision maker” had not even read (or deigned to accept) the information in my application that I had painstakingly gathered from various health professionals.
I had not tried every available treatment, apparently, which proved I was not permanently ill. A pain management clinic might be a useful avenue, she suggested. When I informed her I did not have chronic pain, she was silent. Every answer was an obfuscation – there are no checkboxes of treatments I should have tried, but as I have not tried all the treatments they want me to but can’t name, I am clearly a faker. 8 years of illness matters little.
There was no evidence of substantial functional impairment – besides, of course, written testimony from various medical professionals that I require permanent care, that I cannot live independently, walk further than a few paces, drive, or do near anything without assistance. All of which was verified by the WHODAS2.0, the world’s standard for measuring generalised disability and impairment. If I could just prove that my mobility was impaired, say, by a specialist who wrote me a prescription for a wheelchair, that would count for something. Unlike my word (or the word of my current doctors, it would seem).
And this is what it boils down to – I am not seen as a reliable narrator of my own experience. Everything that comes out of my mouth, as a disabled young woman, will be a lie. Unverifiable. Unproven, unless a middle aged white man in a lab coat with a degree says so too. The answer is laughably simple in the decision maker’s mind – merely have every specialist I have ever visited write me a letter saying their treatment failed for me and I am permanently unwell. When I replied that no specialist would ever write a letter admitting their treatment was ineffective, she laughed, and said: “I know”.
So as much as I continue to fight, I realise it is futile to fight against a system which does not acknowledge me as human, my evidence as verifiable, or my testimony as worthy. The evidence which took so much pain and energy to acquire for my initial application, the evidence which addressed every single one of the reasons I was rejected, meant nothing. How can I further prove claims which are already proven? It is like arguing with someone who refuses to use logic.*
My psychologist is convinced this is the NDIS’ way of informing me that I will never be accepted by their system, and I’m inclined to agree. We could gather the information they claim they need – and it wouldn’t be good enough, the goalposts would shift and they would still find another way to deny me. They had not even informed me of all the reasons for my rejection on my pro-forma, one-paragraph “access-not-met” letter, so if I had not taken the initiative to enquire about the decision-making process, I would not have been able to submit evidence to counter all of their claims and my internal review would be automatically rejected.
This is a completely traumatising process. I’m sure it’s designed that way. Crush applicants to the point of giving up, as it’s less painful to live with no support whatsoever than deal with outright hostility. I have seen applicants brought to the brink of self-harm or suicide by their appeals. What an absolute disgrace – a system that was meant to help people making them feel their lives are not even worth living.
I’m not at that point, though I can certainly empathise. This is where I’m at: waking up multiple times through the night with panic attacks. Leaping out of bed in my sleep, convinced I am under attack from unknown assailants. Shaking and crying from the trauma during the day. I want to throw up just thinking about it.
The past 8 years being unwell and participating in the chronic illness community has convinced me that by far the worst part of being chronic ill is not the illness itself, but having to continually prove that you are ill. Being openly laughed at when you seek help. Having to seek authority approval of your own experiences, from authority figures you know don’t give a damn about your life.
It is so easy for others to say: ignore them, don’t give them oxygen, treat them like a playyard bully.** The factor they overlook, that you cannot possibly understand unless you have been in that situation before, is power. A complete imbalance of power exists between marginalised groups – like the chronically ill and disabled – and the powermongers who hold all the cards. The medical system, the NDIS, social services. When you are being mistreated by someone in power, you cannot always fight back.
Frankly, I’ve reached the point where I’m so fucking sick of this process, I wish they’d assess me and be done with it. Even a rejection of my internal review opens more doors for other applications. The idea of starting all over again, of course, is horrific. But so is this process. I have all the love and sympathy in the world for those going through this application process, or any other similar. Sending strength and solidarity to the spoonie community.
*Alt-right neo Nazis, Milo Yiannopoulos supporters, anti-vaxxers, white supremacists, ableist pricks, black salve proponents etc.
**I don’t think this is great advice for dealing with bullying, BTW.