This afternoon the recommendations from a wide-ranging study of our welfare system will be released. Hannah McGowan, who has lived on a benefit for most of the past 20 years, writes about the indignities and stresses of her life – and the issues she hopes today’s report will address.

The first time I went on a benefit was in 1997 after I was diagnosed with Crohn’s disease. I’d recently had surgery for a burst abscess, a potentially fatal aspect of the incurable condition. Medications weren’t working, I’d lost 30cm of intestine already and my prognosis was bleak. I suddenly found myself unable to work and lost my burgeoning economic independence. I was already profoundly upset with my circumstances and the inability to work was a real kick in the teeth.

My grandparents took me to a nice WINZ (Work and Income New Zealand) welfare office where I met a kind and compassionate caseworker. He was empathetic and professional. I miss him. The days of having the same WINZ caseworker are long gone. Losing a caseworker who understood me and watched my story unfold over the years was an enormous blow. Every time I have gone into a WINZ office since I’ve been terrified about who I might get on that day. There are some great people working in WINZ, but there are also caseworkers who operate from a place of cruelty. It can be tense and hostile. I have dropped off documents at my WINZ office while barely avoiding violent client outbursts, witnessed broken people weeping helplessly without any privacy.

I’m a well-spoken Pākehā woman with a medically diagnosed chronic illness, yet I’m scared of WINZ. This makes me painfully aware of how hard navigating our often punitive welfare system must be for anyone without my privilege. From the moment I first received the ‘Invalids Benefit’ I began to feel differently about myself. I felt like the stigma of being a beneficiary was stamped on my forehead in official red ink. I began to feel like a failure and as if I had nothing to contribute to society – at least not economically. I want to contribute. I want to study, tautoko (support people) and try to make a difference. But my body won’t play ball. It keeps attacking me and forcing me to take a back seat in my own life.

Living off welfare in the late 90s was frugal but I was brought up to manage frugality so I was content. Having done well in high school academically I took advantage of a WINZ policy that offered 60% of university fees for solo parents and invalid’s beneficiaries. This was an incentive to study and perhaps have a chance at a well paid and secure job, suitable for my particular disability. It was an outstanding social investment. The scheme doesn’t exist anymore, causing a profound, multi-generational loss to New Zealand’s workforce. I enjoyed the first year and intended to some day return, but now I simply can’t afford to take on 100% of a student loan.

I guess I could’ve worked in an insecure minimum wage job but that would’ve planted me back in the hospital within months, costing the country hundreds of thousands and most of my insides. Welfare gave me choices, independence. I appreciate my tax-payer funded income immensely and am proud to live in a country that, at one point, had one of the most robust welfare systems in the world. I try to enjoy the good days but those ‘good days’ are often wracked with guilt because as someone on welfare I often feel undeserving of any moment of comfort.

Caseworkers at WINZ will often demand bank statements so I always feel like WINZ is looking over my shoulder. Every time I buy something non-essential, even if it’s secondhand, I find myself mentally scrambling to justify the purchase. It’s become part of my life, an everyday buzz in the static of my anxiety.

I was casually freelancing for a national newspaper when I met and married the father of my two children. Both of us were barely making ends meet. When I talked to WINZ about the situation I was informed that if we got married I wasn’t entitled to my benefit anymore. WINZ had a new policy for the new millennium. If you lived with anyone other than family or flatmates, married or not, you lost your DPB or disability benefit. I remember thinking it was a huge step in the wrong direction. We decided to get married anyway and he found a better job but my health started to go into freefall. We found out we could apply for other extended support at WINZ and he left work to help me with our two young children. We didn’t want to be on a benefit forever but it was a lifesaver at the time and I successfully avoided further surgery.

I was comfortable about being on a benefit for a time because I felt I was ‘contributing’ in some way. I was writing a novel and several short stories and undertook some paid writing work as well as raising chubby babies. My husband was helping out on a local farm for the experience but was mostly at home. We felt pretty good about our future.

But one incident that I can’t forget destroyed this brief period of peace and calm. We had dinner with my mother-in-law and her friends, a healthy, wealthy, and hard-working couple in their late 40s. As we chatted the husband suddenly asked what we did for money. I explained that I had Crohn’s disease and as such my husband was at home helping me out and we received an invalid’s benefit. He asked how much we got a week and I told him.

He responded with utter disdain. “That’s how much I pay in taxes, so I’m paying for you lot.”

My heart sank. I hugged my son a little tighter and felt an excruciating pain bloom inside me that has never really left. This is how middle New Zealand views beneficiaries. Useless bludgers. Parasites. Part of me was astonished that anyone could make enough money to pay that much tax a week and not want to share any of it, but mostly I was ashamed and humiliated.

Dehumanising experiences make me try hard to prove that I am one of the “deserving poor”. Sometimes his words flash through my mind and it makes me want to erase myself from this world. I’m now afraid to tell people about my situation and I feel like I have to justify my existence every second of every day. I often feel worthless and like I want to disappear. I’m constantly pulled between the heavy tug of my body’s erratic pain and fatigue and the desire to be productive – to ‘contribute’ to society. I constantly feel like I’m failing.

The stigma of being a beneficiary is woven into my core, hunching my shoulders, chewing away on my brain. I even write little notes to WINZ when I re-apply:

“I know I still need help and I wish I was in a position to come off the benefit, but I’m really trying and I hope I can give back to society one day, so please accept me.”

I separated from my husband when my youngest was three. My coping strategy was to keep chipping away at writing. I was good at producing work but terrible at figuring out how to get published. I wrote for newspapers and magazines from time to time and relished doing something productive outside of parenting. But choosing to take on writing work meant calling WINZ every single week to declare any earnings and struggling with a constantly shifting income. It’s really challenging juggling freelance writing and WINZ. You can declare your extra income weekly and they’ll adjust it, but I could do three months of work and then get paid all at once. So you can’t declare income weekly because if it’s that week they think you’re raking it in and stop your benefit entirely. You try to plan ahead and turn work down if it looks like you might earn too much. Then taxes join the party and you’re totally screwed. It’s a frustratingly counter-intuitive process. I find myself trapped in an uneasy half-world: too sick to work a regular full-time job but unable to make enough money from writing to get off the benefit.

I can’t remember what it’s like to go to the dentist or doctor and not feel sick about how I’m going to pay for it. I’ve never had my car go in for a WOF and not felt dizzy worrying over the result. I am resourceful and careful but I still can’t save money for a rainy day. Existence is precarious. My children miss out. Birthday invitations can bring on a cold sweat when you don’t have enough money to send your child along with a gift or have enough petrol in the car to get them there. It’s tough, it really is. Welfare payments sit well below basic living costs in Aotearoa. There are no luxuries like going to the movies, haircuts or a nice dinner out now and then. It’s not a life people willingly choose.

Our current WINZ system is designed to deter people from relying on it for too long or developing what has been labelled ‘welfare dependency’. This assumes that being on welfare is a choice we make. The idea that people choose to be on a benefit or a low income is incredibly short-sighted. No one chooses to be poor. It is far more complicated. The vast majority of beneficiaries have been left with constricted choices; take whatever low waged crappy job on offer regardless of your physical capability, starve, marry for money, make money illegally or go on welfare. Limited choices put people in dangerous, precarious situations.

One of the most inhumane parts of living on a benefit is the restriction on forming relationships. I find it strange that I can have a random boarder or flatmate living with me full time but I can’t have partner stay more than a few nights a week. I’ve been assaulted and ripped off by flatmates that knew I relied on their share of the rent to keep a roof over my children’s heads. I had to find the strength to deal with them while hastily finding replacements so I didn’t fall behind on rent and get kicked out by my landlord.

A few years back I met someone I wanted to live with, but my benefit status quickly became an issue. We went to a WINZ meeting together to openly and honestly discuss our situation and I was told that I was “lucky to find someone willing to take me and my kids on” and that if we wanted to live together, he’d have to stop making art and get a full-time job to support me and my children. He was a decent guy but no fledgling relationship should have to face a situation like this. WINZ was telling him to take on a life of drudgery and put his dreams aside, for me. Not a great place to start.

We eventually decided to pool our resources and moved to a bigger house with his sibling.

I started a new medication and was seeing a reduction in my symptoms so I began working part-time. My body couldn’t handle hospitality for long and I understood why when I was diagnosed with fibromyalgia. I hurt everywhere, all the time, even when I’m lying down. Another affliction with no cause or cure. Standing for long periods of time, running around, lifting and bending has become agonising. Another avenue for income and independence closed for me.

I worked briefly as a 111 operator before the department was shut down. I tried to move into full-time call centre work with Spark but my hair started falling out in clumps and I was sobbing driving to and from work almost every day. I was running out of options. Being in a relationship put enormous stress on me to provide. I was running a household, being a mum and feeding a family, all while trying to work and manage a chronic health condition. The relationship fell apart. I ended up back on the Supported Living Payment.

I absolutely disagree with the way WINZ policy directly interferes with acutely personal matters like dating. If you want any kind of financial independence on a benefit you simply can’t have a partner or anything like a partner in your life. We’re social animals and finding a compatible mate is built into our DNA. WINZ policy means that people miss out on opportunities for happiness, companionship and fulfilment.

WINZ needs to change. I don’t expect to see increases to benefit payments or anything wild like that but I believe people should be allowed to be in in a relationship while retaining their income. Why should my partner become responsible for me, especially if they are unable to secure regular, decently paid work themselves? Obviously, if one partner is making thousands while the other claims a benefit they don’t need, put a stop to it. But I don’t know anyone in that situation. Does anyone? Are conniving couples a myth invented to justify the way we treat each other and rationalize denying certain people the chance for a normal life?

It is a fundamental human right to share our lives with others. Forcing one party to lose all entitlement to an income because they want to move in with someone is demeaning and opens people up to all kinds of dangers and abuse. It’s a punitive, cruel policy that further alienates vulnerable and isolated individuals.

I’ve managed to create a pretty good life for myself considering I’ve never peeked over the poverty line for more than a few months since I was a teenager. But I had a lot of opportunities that others didn’t – educated, supportive parents, a number 8 wire mentality, having my tubes tied, the ability to prop myself up from time to time with writing work, being Pākehā.

People on welfare are struggling immensely. It’s never been this difficult to survive on a benefit before and it’s incredibly hard to find suitable work if you have health issues or young children.

I hear many harrowing tales of WINZ mistreatment and families living in overpriced, mouldy homes or vehicles. Being poor is hard on all levels but when you add the stigma of shame to poverty and deny people the basic human right to have a partner, life becomes impossibly hard.

Being forced to rely on welfare affects every aspect of your life. People are losing hope. We desperately need a major systematic overhaul to our welfare system.