Two years ago today, my column launched in the Nelson Mail. I was struggling with my as-yet undiagnosed illness, and was in the midst of a public battle for better treatment from WINZ. That week, I’d had my credibility slammed by Minister Paula Bennett. I had no idea what would happen next.

I look back on that time with mixed emotions. I’m proud of what I achieved – but I also feel that I deeply failed. My story may have got WINZ mistreatment into the media and in front of politicians who have more means than I – but two years on… what’s changed?

I know that both Labour and the Greens have been doing work in this area, and I’ve been privileged to see some of that. I also know that they have limited capability to get new policies across the line. Nothing can really change unless the government does.

But it’s more than that. Yes, policy is a problem. But policy isn’t created in a vacuum. The real issue is cultural.

New Zealanders are guilty of believing there is such a thing as the deserving and undeserving poor. There’s nothing better to do around the dinner table than a good ole bit of beneficiary bashing. Do I sound bitter? Good, because I am.

It’s this rhetoric that informs my own struggle with accepting the welfare I need to survive. The welfare I’m entitled to, because I pay taxes. Because we are a democratic welfare state. And because I’m sick.

It’s this rhetoric that makes me, and so many others, feel like ‘less-than’ for needing what we’re entitled to. It’s so ingrained in kiwi culture that, for me, it’s now internalised self-doubt, and sometimes even hate.

I’ve been extremely lucky since I spoke up about the mistreatment I was experiencing. The media has power. That power meant that WINZ did what was needed to make me shut up. Unfortunately, the more humane service I’ve been receiving isn’t afforded to so many others. And for me, it looks like it’s coming to an end.

I know I haven’t written about all this in a while. I stopped fighting, for a number of reasons.

– As I said, WINZ  took notice of my complaints. They made sure I had a good case manager. They stopped sending me letters every week. They stopped requiring that I come in every month. This actually should ring alarm bells, because what it means is: all the “rules” that you’re told are set in stone? They’re not. They can be bent, if the right person makes enough noise about it. It seems pretty clear to me they weren’t being kind because they understood my situation.

– WINZ also took notice of me. It wasn’t until I requested all the information and correspondence they had on me under the Official Information Act, that I was able to see how much they were monitoring me. It was very disturbing.

– My speaking out made me a target for a lot of abuse, and in one case, stalking that lead to me having to go to the police. I didn’t want that attention any more. It was scary and harmful and I needed it to stop.

– I was exposed to all the horror stories of WINZ mistreatment. It’s really hard hearing people’s experiences and feeling like there’s nothing you can do.

– The system is a behemoth. The system is so, so broken that I couldn’t fight it any more. It felt like nothing I did would make any difference.

– Ultimately, being sick means being selfish. I’m exhausted, I have anxiety, and I couldn’t cope with it any more.

As I said, I’ve been lucky. The past few months, I’ve had a good case manager who genuinely seems to have my best interests at heart. However, I don’t have her any more.

The first thing I noticed is that, like I said, I haven’t been required to have appointments every month. I’ve been proactively making my own appointments, because I’m anxious that, if I don’t check in with them, there’s going to be something that gets missed. I constantly expect them to go “Oh, by the way, you owe us this many thousands because of some thing back in November which nobody knew about because you didn’t come in.” So in order to alleviate my own anxiety, I’ve been making appointments every couple of months.

I’m doing my best to work with them. I’m doing my best to do everything legally, because I feel like it’s very easy to do something wrong.

A couple of weeks ago, I got a letter to say I was due to reapply for TAS (Temporary Additional Support). Rather than just fill in the form, I made an appointment to make sure I did it right.

The appointment began with the case manager flicking through the form, which I had only partially done, and saying “yup, I’ll file this.”

I said, hold on, I’d like to know what you’ve got on my file for boarders, because I have a new boarder. I need to know what the information is currently so I can update it.

She replied; “Oh, that doesn’t matter, one boarder doesn’t make a difference,” and proceeded to show me the bit of the WINZ website that says that you only have to declare a third one.

I guess they have to assume people don’t have the internet or don’t know how to use their website. But I knew this, and I replied that I do have three, you have that on file. You’re charging the third one as income.

So she goes to look, and sees that yes, they’re charging me.

Having verified this, I asked again to see the file.

And she couldn’t show me. Which is very strange, because I know that they photocopy everything and scan it in. Why can’t my case manager show it to me? And how can I  declare that the situation has changed when I don’t know what they currently know?

The CM then noticed that my rent has increased by $15 a week, and said that I’d need to bring in a signed letter from my landlord.

I didn’t really understand why, because I already receive the maximum accommodation supplement. An increase of $15 a week isn’t going to make any difference to my benefit payments. All it means is more paperwork.

Finally, she insisted on making another appointment for me in a month, for an update on my work situation.

I was confused by this, because A) My illness is incurable and isn’t going to change in four weeks, B) I declare my income to them every week online, so they know I can only work a small amount occasionally and all that information is readily given and available to them, and C) As I said, they haven’t been making appointments for me since like July last year, so I didn’t expect them to demand to see me again so soon.

*cue exasperated and very tired sigh*

There’s two things to note here. One is that, again, I’m sick. For a healthy person, maybe none of this would be an issue – getting more paperwork, going backwards and forwards, the anxiety and physical labour. But it is for me.

And two, the whole time with WINZ, I’m doing this weird positioning thing. And it’s not just about trying to make sure that I do everything legally.

No, it’s more than that. It’s about trying to convince them – and everyone else – that I’m one of “the deserving poor.” That my situation and even my nature means I deserve what I’m actually entitled to. It makes me ill, the whole idea of it, the feeling of performance. I don’t want to buy in to this – the idea that there is an “undeserving poor.” The idea that if I show resistance, my rights might be questioned. It’s demoralising and terribly sad, and exhausting.

Who are the “undeserving poor?” And who decides that?

As I said.

I don’t think the policy is going to change unless the collective consciousness does.

I hope I get to see that happen.