Trauma is the blurst (and so is the NDIS)

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.

Author: Siobhan S

20 something, living in country Australia. Spoonie profile: ME/CFS, dysautonomia, anxiety. All about sewing, knitting and food. Unapologetic feminist and disability advocate.

22 thoughts on “Trauma is the blurst (and so is the NDIS)”

  1. I am so sorry you are being put through this. It is an absolute disgrace how you, and other sick and disabled people are being treated while you try to get the support you need.

    Liked by 1 person

  2. I’m disgusted, angry alongside you, but unfortunately not surprised. This seems to be the way the world is going- everything is about THEM saving money at the expense of the lives of the weakest.
    Spoons darling, for what they’re worth.

    Liked by 1 person

    1. Thank you ❤️ It’s a classic neoliberal ploy unfortunately – the conservatives take a hold of Labor’s social programs and deliberately bring them to their knees to make the case that Labor can’t manage the economy. We’re just the collateral damage.

      Liked by 1 person

  3. And this is why I’ll apply for my piddly Social Security early, and never apply for Disability help. I will be penalized for early retirement, AND will still need to work somehow. But I’ll never let them demoralize me by giving them all of my private medical information. Especially since I don’t even like to go to the Dr ever!!!

    I’m so so sorry this is happening to you. Government stinks. (((HUGS))) And how terrible to have that woman call you accidentally and divulge another person’s information!!!

    Liked by 1 person

    1. I understand – applying for disability (which I did some years ago) was another task in itself! I’m glad that’s over but can certainly see why you’d rather avoid it. There is a great danger in the government having access to our information. The Australian government has recently launched a national health record which any court, police officer, social worker or potentially health insurer could access! What a terrible idea. Hugs back x

      Like

  4. Eugh, frustrating and disgusting doesn’t cover it. I’m so sorry you’re in this position. ” The idea of starting all over again, of course, is horrific. But so is this process” – that’s an awful place to be in, and it’s a fight against a system that’s flawed and unfair. Keep fighting the good fight. While the power imbalance you rightly pointed out does exist, you have to hope that logical reasoning and compassion will prevail eventually. Sending hugs for the tough times lovely xxxx

    Liked by 1 person

  5. The problem with having needs-based social assistance is that people who really need the assistance also don’t have the wherewithal to jump through all the hoops. So you have this system that is (ostensibly) designed to assist disabled people, but in order to make sure that only disabled people can access it, they make sure disabled people can’t access it.

    And then you combine that with the false omnipotence of the medical model and you’ve got a pile of shit in your hands. You’re right, no doctor will put in writing that they did everything they could and it didn’t help. And yet our needs-based assistance programs ONLY trust medical professionals to state when someone is sick despite their best efforts. But when health care providers aren’t empowered enough to say that don’t have the power to heal you, they also essentially don’t have the power to tell the government you need more help than they can give.

    And so here you are, working yourself into flares all year to gather documentation only to discover it’s not quite what the government had in mind and this (vindictive sounding) person on the phone is telling you she KNOWS. I don’t think the answer is in finding biomedical markers for our illnesses that validate them within the medical model, I think the real answer is in disempowering the medical system and re-empowering subjective experience. Because it’s bullshit that you cannot advocate for yourself, that your story is not believed, that you are not trusted to know your own life.

    Liked by 2 people

    1. Yes! All of this. So much. I wish I was able to offer an articulate a reply as your comment deserves….but I’ll just say thank you for putting all of this in words.

      Like

  6. My heart just about broke for you reading this, sweet Siobhan. I can’t even articulate how it all makes me feel – the level of rage towards the system that is battering you, and the amount of love and compassion I feel towards you, neither can be adequately expressed. I wish I could wrap you in a big warm hug, and also that I could storm in there and even *attempt* to go to bat for you. It’s so sick that a system set up to help people who are ill and disabled is so fucking broken and geared toward not really helping anyone at all and rejecting people who clearly need the services they are supposed to be there to provide.

    ❤ ❤ ❤ ❤ ❤ ❤

    Liked by 1 person

    1. I’ve been thinking all day about how to reply to your comment. You are so kind to even be thinking of me when you are going through such a traumatic upheaval in your own life. Your support truly means so much to me. Sending you all the hugs and love in the world – I’m so glad we “met” online. ❤️️

      Like

  7. As an HSP my heart aches for you. As someone who is walking the same path I’m angry alongside you. As a chronic illness warrior I’m feeling defeated too. This process is absolutely emotionally and financially abusive. My therapist asked me why I wasn’t going to appeal…back to the same judge who wrote horrific things about me and plainly lied in his decision. I thought to myself…you don’t know, you don’t know what it feels like to push your pride aside and feel like you are groveling and then have someone call you a lier. To gather all the documents, to fight for yourself at every turn, to convince yourself over and over and over to put your big girl pants on and keep fighting and then be rejected. It’s horrible. I’m so sorry you are going through this, Siobhan. I’ve transferred the line item – find a new disability attorney to list after list – because actually doing it and starting this whole process again after five rejections, knowing that they can just lie, feels like an exercise in insanity. But what’s the choice? Hugs

    Like

    1. What is a HSP? All I can think of is halal snack pack haha….yum. You have been through so much and I know you understand exactly what I’m going through…if not worse. I don’t think I could take this to court. Like you say, if you haven’t been there you don’t know – it’s almost futile going through it all if they are just going to ignore the evidence you put in front of them. The system does not follow the rules of logic or justice. I hope you get what you deserve. Much love.

      Liked by 1 person

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