Hi all! I have to make this quick because I’m currently recovering from a head injury, which means extremely limited screentime.
I’ve been pretty quiet lately, even before the injury. There’s a couple reasons for this. The first is that, now that I don’t get a benefit, I feel like my opinions about social welfare are less… valid, I guess. I mean, I’m still allowed to have them, but to be honest I’ve spent the better part of seven years writing about the many many ways in which our welfare system destroys people, and I got tired of repeating myself.
The second reason is just that I’m tired in general. Because I am in a relationship and therefore no longer qualify for any disability support, I need to work as much as I physically can. Which still isn’t much – I only work three days a week, but every day after work I come home exhausted. Stress exacerbates my illness and yes, going back to work, navigating my relationship, looking after my family and worrying about money are all impacting my health.
When Isaac Davison from the Herald contacted me for comment about the relationship rules, I was hesitant, but I felt like this is such an important topic, and that my experience is relevant.
Here’s the article, which shares a bit of my story and focuses on the work organisations like Auckland Action Against Poverty and Child Action Poverty Group are doing to try and get the relationship rules rewritten.
Of course, Isaac couldn’t include all my answers in the final piece, and I did feel that I articulated some really important points, so I thought I would put them in full here.
1. Can you tell me a bit about yourself and about how you came to be on welfare?
Sure. Seven years ago when I was 25, I became catastrophically ill and was hospitalised with an infection that would have been fatal without antibiotics. When I was in hospital, a social worker brought me the forms to fill out to apply for a benefit. I wept – partly because there were just so many forms and so much evidence I had to provide, at a time when I was bedbound, and partly because applying for a benefit meant I had to accept that I wasn’t going back to work anytime soon.
I’m a writer who has worked in comms, journalism and PR, and I love my work. But a year and a half after I was in hospital, I was still mysteriously unwell, and was finally diagnosed with Ankylosing Spondylitis. AS is a kind of genetic inflammatory arthritis that attacks your neck, spine and pelvis. It is extraordinarily painful and is managed with immune suppressants, a variety of pain medications, and steroids. If a patient doesn’t respond enough to those, they have chemotherapy, which I did in 2017.
The AS and associated pain and fatigue makes work incredibly difficult, but over the past few years I’ve worked as a freelance writer whenever I could. That was partly because, as I said, I love my work, and partly because the benefit is difficult to survive on.
Last year I was finally granted the Supported Living Payment, after years of being on Jobseeker Benefit, which was inappropriate for my situation. The SLP is intended for people with longterm illnesses and disabilities. It is slightly more money, and WINZ leave you alone a little more. Me getting the SLP recognised that my illness was permanent and heavily impacted my ability to work.
2. How did the rules around being in a relationship while on welfare affect the way you thought about relationships or potential partners?
They made me very nervous. At the same time, I always thought ‘I’ll cross that bridge when I come to it.’ When I met my partner, we discussed the situation thoroughly. I was afraid to take the step of moving in together because I felt there would be a power imbalance – he’d be working to support us and I’d feel terrible for being sick and not contributing. As a feminist, that thought was pretty unbearable. I think this power dynamic unfairly impacts women, especially ill or disabled women. You have to consider factors like “Do I trust my partner enough for them to have control over the money I need to go to medical appointments? To pay for medication or disability aids or expensive dietary requirements? How vulnerable will I be? What if I need to leave? What if they become resentful?” These are not the sort of questions most people have to ask themselves when getting into a relationship.
3. If it’s appropriate – can I ask at what point in your relationship (which you wrote about in your blog) were your benefits removed?
I actually took myself off the benefit because I knew I was no longer eligible, and I was tired of fighting WINZ. I stopped the payments myself when we moved in together. Before that, we didn’t have a ‘relationship in the nature of marriage’ because it was long distance and there was no financial factors.
4. How much impact did this have?
The impact is huge and ongoing. I was lucky enough that my health had improved enough that when I stopped the benefit, I got my old job back. However, I still can’t work more than a few hours a week, so my financial contribution to our relationship is minimal. The salary I earn is less than the benefit was. Working takes a big toll on my health. I get stressed very easily which triggers my illness, and I come home every day utterly exhausted. It’s difficult to give other areas of my life the attention they deserve. In fact, three weeks ago I was so exhausted and distracted, I stood up underneath a shelf and gave myself a head injury that almost knocked me out and caused significant trauma to my head and neck. I still went to work the next day because I had to, but then I was diagnosed with concussion and am still recovering.
Like most people, we can’t afford to live on one income, so I continue to push myself to go to work. On the one hand, I’m so so happy to be back at my old job. On the other, the pressure on me is clearly impacting my health negatively. I’m constantly worried that I will relapse back to where I cannot work at all.
I think the rules should recognise that people who are on the SLP have different circumstances to people on a Jobseeker benefit. I think the relationship rules should change for everyone, but I also think that people with chronic illnesses or disabilities are more vulnerable. Regardless of our relationship status, we still have expensive medical costs, and many of us simply cannot work, or work more than we are. Therefore it’s a huge risk for people, to give up their benefit and rely on someone else to support them. I think the government needs to recognise the situations they’re creating here. You’re putting people who are already vulnerable at risk. Even if I couldn’t get the full benefit entitlement, there should be some form of support with the costs associated with illness and disability.
It puts huge strain on the start of a relationship. You have to have the conversation “Are you willing to support me completely?” right from the beginning. There’s no other situation like that. So not only did I have to adjust to living with someone and all the dynamics and challenges of a new relationship, I also had to adjust to going back to work at the same time. It’s been incredibly stressful. If I’d had the choice, I would have kept the benefit for a few more months at least, just to be able to tackle one thing at a time.
I feel if I do relapse because of the stress and pushing my body too hard, that’s entirely WINZ’s responsibility, because their rules forced me to do so.
I will then need further medical support which will cost the country more, so me not receiving a benefit has no economic benefit to NZ.
5. Any other comment?
I have to recognise our privilege. We are both well educated and have the skills required to do work that pays well. This also allowed us to research and prepare for the situation. I’m also extraordinarily lucky to have met someone who is more than willing to support me in any way I need.
If this government is truly committed to wellbeing, they need to make the changes recommended by the Welfare Expert Advisory Group. It’s shocking that they would form such a group, commission such a thorough, extensive report, and then not implement the recommendations. It’s also a slap in the face to all the people who participated in the WEAG consultations and shared their life stories, yet again, in the hope of change finally happening. The WEAG recommended that people could keep their benefits for six months after entering a relationship, which I think is still not enough, however, it would have made all the difference to me.
Thanks for reading. Please let me know if you have comments or questions.
Image credit: Lisa Sterle.
Hi Sarah. Just checking to see if you and family are ok in these strange times. No need to reply just wanted to let you know I’m still here and interested in your writing when you are ready to publish more. 💓 Jane