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OPINIONSocietyMay 15, 2023

Why people with disability get caught in a poverty trap

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The link between poverty and disability is clear – but it’s far from inevitable, and we don’t have to accept it as so, write Amy Hogan and Rebekah Graham.

In Aotearoa New Zealand today, disabled children are more than twice as likely than non-disabled children to be in low income households. One in five disabled children live in material hardship – a term for difficulty meeting day-to-day living costs. Disabled children are doubly vulnerable to poverty: both as children and adults. Disabled youth are twice as likely to leave school with no formal qualifications, and four times as likely to not be in employment, education or training.

Disabled people and their families tend to be resilient and resourceful. We don’t give up. We are experts at the “number 8 wire” approach of making do and getting on with it. However, over time, with endless delays, indirect and direct costs, and disappointments, individual resilience can fray. Living with dignity and meaningful employment are challenges. Resiliency is not something that can be achieved or sustained alone. It’s a patchwork that needs many elements of support – individual, community and government.

A core challenge is that many people without disability cannot fully comprehend the additional costs associated with disability, or the multiple barriers that people with disability face when accessing support that is available. This double whammy of invisibilisation makes access to support and talking about circumstances more difficult. It also means that non-disabled people can fail to recognise what disabled people are capable of. The experience of poverty is also largely hidden from public view, making it harder to reduce barriers to full participation in everyday life.

Image: Getty Images; additional design by Archi Banal

Here’s a snapshot of some extra costs – in both money and time – for people with disability:

Glasses

If you require glasses for your vision, and if your nose/ears/face are “non-standard”, you will require specialist fittings and intervention. Stringent criteria must be met before available subsidies can be accessed.

Clothing

Poorly fitted clothing can contribute to pressure sores and increased discomfit. Not only do wheelchair users need tailored items for clothing to correctly fit their bodies, but clothing wears more quickly due to wheelchair use.

Dentists

Extra time is often required to address multiple and complex issues. Experienced paediatric dentists are rare, necessitating expensive appointments or long waitlists.

Food and diet

It is common to experience food sensitivities, aversions, and specialist dietary requirements. Sometimes this means a great deal of trial and error. For example, one family we know of trialled seven different supplement formulas before finding one that was suitable, digestible and tolerated by their child.

Specialist bathroom, bedroom and kitchen supplies

These are necessary for people with different mobility needs. For example, skin deterioration may require using a bidet, or a person may need nonslip mats for plates and cups. The publicly funded equipment is limited and one size does not fit all, leading to a fair amount of trial and error and costs to the user.

Family and community-related needs

For example, the need to hire (more expensive) wheelchair-accessible venues, the need for supplementary oxygen to undertake daily activities, the need to pay for care workers to travel with you, the need to hire a wheelchair van with a hoist, and the need to pay higher costs for travel insurance.

Specialist health appointments

Disability-related specialists are frequently located in metropolitan centres, meaning those who live rurally often have to fly or drive long distances, and pay for accommodation, in order to attend specialist appointments. The current reimbursement rate for parents who do this is 28c/km. For comparison, the Ministry of Health pays their workers 68c/km to do the same, and the current IRD rates are 82c/km. Time off work is not reimbursed.

One parent we know of had to do travel into the city three times in one week to see three different specialists at the same hospital. Many publicly funded specialists have long wait lists, resulting in increased health complications by the time people are seen. The alternative is a private specialist, but the cost is prohibitive.

Care worker support

Carers are sometimes needed in order for disabled people to attend functions, appointments and social events. This requires additional transportation costs, employment costs and logistical planning.

The framing of beneficiaries as a net negative to society also harms disabled people. Not only is financial support for those with disabilities hard to get, information on how to access it is difficult to find and typically requires experience. This can result in parents spending disproportionate amounts of time navigating overly administrative welfare processes and having to prove their child’s disability repeatedly. When applications are submitted, their approval can depend on the opinions of people without direct experience of disability.

Our attitude towards both poverty and disability need to change to one focused on an upward spiral of wellbeing. The poverty-disability link is not inevitable, and we need not accept it as so. Raising awareness of societal attitudes and working to change them is an important step, and so is providing financial support without heavy bureaucratic requirements. Thoughtful, empathetic responses that remove barriers to support are invaluable, as are welcoming and accessible environments.

Ideas for change, starting now

  • Commit to eliminating deficit-based language for beneficiaries. Reframe benefits as earned entitlements, rather than the current focus on worthiness and support categories.
  • Implement the Welfare Expert Advisory Group’s recommendations on financial support, specifically recommendations #40 and #41. While we applaud the government’s indexing of all benefits to wage growth, this is insufficient to address the significant shortfall in disabled incomes.
  • Lift all levels of support provided by Ministry of Health and disability providers to match the levels of support provided by ACC to people with accident-related disability. Raising the baseline income for disabled people and their families can be a start.
  • Implement working entitlements fairly for everyone.
  • Lobby for the tripling of the child disability allowance and the disability allowance

Amy Hogan is based in Auckland and lives with cerebral palsy (CP). Amy incorporates her day-to-day experience into her work at the Cerebral Palsy Society of New Zealand. She has over 15 years’ experience implementing and overseeing national disability research projects as a researcher, analyst, writer and advocate focusing on health and social justice. 

Dr Rebekah Graham is a very tired Pākehā mother of four children, who is passionate about community psychology and loves her work with PVINZ, a national charitable organization that provides support and advocacy for parents and whānau of disabled children. She lives in the Waikato with her family and two very smoochy cats.

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Sunday Essay Natasha Vermeulen Feature Image

The Sunday EssayMay 14, 2023

The Sunday Essay: My favourite girl

Sunday Essay Natasha Vermeulen Feature Image

Falling in love with a man who has a young daughter is like falling in love twice. But it doesn’t make me a mum.

The Sunday Essay is made possible thanks to the support of Creative New Zealand. First published May 8, 2022.

Original illustrations by Natasha Vermeulen.

The first time my partner’s daughter says she loves me is after we’ve been to McDonald’s for dinner. It’s her dad’s birthday. We’ve had a fun-filled day. We just watched a soccer game live and the Phoenix won spectacularly, then we caught the train back with lots of other over-excited fans. Earlier in the day we ate lunch with her grandparents, aunt and uncle and her one-year-old cousin. I let her decorate the lemon sour cream cake with decorations she’d chosen herself from a shop to celebrate her father’s 39th birthday. She stabbed edible sugary rainbows mounted on toothpicks and colourful round lollipop-shaped candles into the thick, white icing one by one, in a formation of her own design. She is four years old.

Now, as we walk out of the brightly lit restaurant at the end of this happy day, bellies full of fries, she asks if she can tell me a secret. I bend down so she can whisper in my ear. Her father watches on, a few steps ahead.

“Um um um,” she starts, gulping down air after each word. “Um, um, I love you.”

I feel a drop as if I’m on a roller coaster, and I know I must say it in return. I place a hand on her back and whisper, “I love you too.”

Dating a man who has a young child is like being in two new relationships at once. There are two new people who are very significant in my life. We’re getting to know each other over time. Bit by bit, day by day, a new family is building with every interaction we have.

Their presence changes what my life looks like. I no longer feel that I failed my life by not going ahead with the engagement I called off a few years before. I’m no longer just passing the time outside of work. I still spend some evenings alone, painting my nails, watching quiet foreign films and sipping peppermint tea… but there’s more to my life now than just getting through it. The possibility of a new future spools out before me.

The opportunity for a different kind of life, one I never thought I would have, has opened up.

My new life arrived in a rush of berry-scented Trolls-branded detangling hair spray. My new life is accompanied by a pink flamingo soft toy that twists its long neck in time to fast-paced electronic music when a button in its side is pushed. My new life wears glittery gumboots that have coloured lights in the soles and a t-shirt that says “Save The Bees”. She puts her hand on her hip and says “OK, so” repeatedly when she’s thinking. Her dad, my dream boyfriend, wears floral Vans and a Veruca Salt t-shirt. He shares my love of Fiona Apple, New York City, Murakami and Henry Miller. He drums his fingers lightly on nearby surfaces when he’s thinking.

In the back of my dream boyfriend’s Nissan there’s a booster seat, with a blue rug next to it that his daughter can toss over her knees and snuggle up in on chilly mornings. Often there are crumbs of the crispy noodles she likes to snack on. There are always several assorted small soft toys around: a fluffy duck, a teeny tiny teddy called Teeny Tiny Teddy, a plush round ball with eyes and a unicorn horn, a small grey miniature schnauzer stuffed toy that I gave her – a mirror image of my dog.

I always thought I wouldn’t have children. When I was younger I was sure I wouldn’t be anyone’s mother because I’d seen my own mum struggle after having me at only 17 years old. It is only as an adult that I’ve come to understand raising me alone was the least of her difficulties during my childhood. My mum had other adult problems weighing her down. Still, the isolation and poverty we experienced were not something I wanted to risk recreating in my own life. Focusing on work, caring for my home and my pets seemed like a simpler way to be an adult. Keeping my life smaller made me feel safer. I never expected I’d want to contribute to raising a child, until I met this man and this child.

The first time I meet this child is when she is three-and-a-half and I’ve been dating her father for a few months. Her dad takes us to a family-friendly pub in Upper Hutt. I need her dad to translate some of her toddler words for me. We share a mushroom blue cheese pizza that she gamely tries, then we order a dessert platter between us. We expect small samples of the sweet dishes on the menu to arrive but a large wooden board is delivered to our table with full-size portions of each of the dessert items. A hulking slice of cheesecake, a slice of banoffee pie, lemon meringue pie, sugar-encrusted churros and a slab of chocolate brownie with half a dozen scoops of ice cream flavours that are rapidly melting. We are mortified and get most of it to take away.

When I say goodbye, she stops her play and looks at me for a moment. Then she runs towards me at top speed and wraps her arms tight around my legs. With that hug, the tone is set: we’re friends, delightedly so.

Dating a dude who has a daughter doesn’t make me a parent. Even if we marry some day, I wouldn’t want to call myself a stepmother. It feels wrong. “Mother” is such a significant word and I haven’t earned it. She has a mother. She doesn’t need another parent-ish figure muscling in on how she should be raised. Her two parents care for her wonderfully, with great dedication.

All I can be for her is myself, and that’s enough.

She started school this year. I finish work early on a Friday afternoon towards the end of her first term so I can join her dad in collecting her from the school gate. We arrive 15 minutes before the bell to get a good car park. When she sees us waiting in the crowd of caregivers, she squeals, “It’s my Jazial! It’s my Jazial!” She turns to call her teacher to attention and says, “Look! This is my Jazial!” I wave ironically at the teacher, embarrassed and honoured all at once.

One day early on in our relationship, my partner’s daughter invents what adults would term a trust game. We are sitting on the sofa while her dad works away in the kitchen making jackfruit tacos with corn, carrot, avocado and tomato – a meal the whole of this new family enjoys, with added hot sauce for the adults. Ignoring her cartoon on the television, she stands up on the sofa and leans her whole weight against my shoulder. Then she steps back and launches forward to lean on me harder. This progresses until she is running back to the arm of the sofa then leaping at me, knowing I will catch her. She squeals with delight when I make a noise as if she’s surprised me every time. I catch her every time. She trusts me.

When I visit with a pack of Trolls temporary tattoos, she asks me to put them on her immediately. She wants them on her feet. One by one, I cut out each tattoo, place it on her foot and press a wet cloth to the back of the tattoo so its design will transfer to her skin then we count to ten together. She’s overjoyed when each one is revealed. “One more,” she says, and I put another colourful image on her foot. “One more,” she pleads, until the whole pack is gone and both her feet and ankles are adorned with the cartoon characters. She thinks this is hilarious.

We go to Rainbow’s End together in Auckland and her dad waits while she and I ride the little roller coaster in the Kidz Kingdom for under-eight year olds. She squeals with joy the whole time, enjoying the freedom to unleash her voice at full volume. Afterwards she asks if I thought it was fun and tells me, “I feel like a bursted heart”, spreading her arms wide and turning her face to the sky to demonstrate what the thrill of the ride feels like. “Me too,” I tell her.

I decide early on that I will meet her where she’s at. If she enjoys my company, I’ll continue spending time with her. If she reaches out to hug me unprompted, I’ll feel comfortable to hug her when I say hello or goodbye. I’ll follow her lead. If she acts up or is unhappy with my presence during her time with her precious dad, I’ll remove myself. Thankfully, she’s always happy to see me.

She wants to know what the word is for our relationship. She asks her dad who she is to me because to other people in her life, she’s a “niece” or “granddaughter” or “cousin”. It’s too complicated to explain there is no word unless marriage is involved because society is weird, so she makes up her own phrase: she’s my “favourite girl”, officially and literally. It sounds much better and more accurate than “stepdaughter” to me.

I worry what will happen in the future. What if she starts to despise me when she’s older and learns the trope of the wicked stepmother? What if her dad and I move in together someday, and it’s confronting for me to share a home with a teenage girl who might bring wild moods in to the house? I remember how my mum’s partner moved in with us when I was almost 13. I think about his generous willingness to accept every emotion I’d encounter through my teenage years. They were many and varied and often, I’m sure, very difficult to be around.

He never once complained when I played the most ferocious music Courtney Love has ever recorded very loud, over and over again. When Hole played at the 1999 Big Day Out, when I was fourteen and obsessed with her (I’d bleached my own hair in imitation, of course), he took me to the show. He always let me be my own person, and would talk to me through any issues and concerns I experienced no matter how volatile I felt in the moment. He stood by my tears and my tantrums. We still talk to each other regularly, about all the things that really matter in life.

Trust the child, a friend tells me when I share that I worry about the future.

Sometimes she gets overwhelmed. When we catch a ferry from Wellington to Days Bay in summer, her dad and I are excited to have an ice cream on the beach on arrival but she cries hiccuping red-faced sobs on the boat. We thought she’d love the journey. Her mood is baffling.

“I want my mum,” she wails, and pushes me away with force when I offer her a drink of water.

Another passenger, also travelling with children, is watching us. They give her a muffin and she calms down after eating it as if the fistful of baked dough has been cast with a spell.

I feel rattled for the rest of the day but she shows me how resilience works: after swallowing the last of her muffin, she asks to go on the open-air top deck that had terrified her moments earlier. Her dad holds her as she looks out at the ocean all around us and feels the wind. “I’m a happy girl now,” she says, “I was sad before but now I’m having a good day.” For the rest of the day, she is bubbly. She enjoys her Goody Goody Gumdrops ice cream cone and wades in the water up to her knees. I decide we’ll always have snacks with us when we go anywhere with her from that day forward.

I understand it must be so difficult to be a child, to experience so much that is new and confusing without the words to articulate how you feel – sometimes, without the comprehension to understand yet why you feel the way you do. You have so little agency as a kid. You get dragged from place to place, you get fed whatever someone else decides to give you. It must be so confusing so much of the time to be a young child in this complex world.

I’m wonderful at being patient. I don’t get angry or have explosive reactions, but I do feel affected by seeing her upset. I get quiet, not knowing what to say. I overthink what the “right” thing is to say, so I end up saying nothing at all.

When we take her to the snow for her first time at Tongariro, she’s distressed by how cold it is but also determined to make a snowman. The fabric on her gloves, socks and scarf begin to bother her once she feels frustrated by the new environment. There are lots of other people around. She’s never seen snow before in her life. The low temperature is shocking to her. Everything about this moment is overwhelming, and I understand that.

I don’t know what to say when she tears off her gloves then wails that she’s too cold.

Her dad is calm as always, but he too is unhappy at seeing her so uncomfortable. It isn’t easy to watch someone you love suffer, no matter how rational you might judge their emotions to be.

Later that night she takes a bath and I make us pasta to eat. She calls out for me from the bathroom, where her dad is supervising. She’s sitting in the warm water with her knees drawn up to her chest and a serious expression on her face. “Jazial,” she begins, and I say “Yes?” She takes a big breath, thinking through what she wants to say. “When Baby Yoda grows up, is he still called Baby Yoda?” She’s moved on from all the fear and frustration she felt earlier. She’s learning to be a person and that presents her with so many mental, physical and emotional challenges to work through every day. She’s bounced back. She always does.

“That was tough,” her dad says later, referring to the whole day. It was, and we got through it. I stayed by her side throughout all the emotions she experienced that day, from fear to joy to exhaustion. I’m proud of myself, and proud of her, and proud of her dad. I’m proud of all of us.

My colleagues aren’t sure what to make of my family situation. Most of the people in my team have young children and I often talk about my partner’s daughter. They’re confused when I explain we don’t live together. I bought my house a few weeks before I met my partner and it wouldn’t have been right to move in together quickly anyway, when his daughter is so young, I explain, but I see them wondering what my role is. We’re not married. We don’t live together. If I’m not her stepmother, what am I? I talk about her when they share stories of their own children but, what? She’s just a kid I spend a lot of time with?

One of my workmates asks me what she calls me. I tell him she calls me by my name.

Once she and her dad and I are at Zealandia bird sanctuary watching kākā and apropos of nothing she tells a stranger who is standing near us, “That’s not my mummy, that’s my daddy’s friend.”

Everyone I know always asks me about her mum. They want to know if she and my partner get along. They want to know if she and I get along. Sometimes I think people seem eager for me to share some drama. Is she a bitch, seems to be the subtext to their nosy questions. We all get along well, I tell them honestly, her mum’s lovely. For my partner’s daughter’s fifth birthday, me and her dad, and her mum and her new partner and his two kids, all went out to dinner together. A happy extended family. People seem disappointed how simple that side of it is. I’m overjoyed – I couldn’t be in this situation if it had any vicious or unresolved elements.

When we’re at her grandparents’ house, she pulls me away from where I’m chatting to her dad on the deck. I leave my glass of rose behind and go along with the game she’s just invented for us to play: first, I have to follow her movements. Walk in slow steps, raising my knees high, then freeze when she says stop. Then she tells me there’s a one-eyed monster behind that tree over there. “OK, so,” she starts, hand on hip, “You have to get two pine needles.” I dutifully pull two needles from the tree. “Now THROW THEM at the monster.” We both throw our two needles in to the air. She pauses in amazement. “Did you see that? All four of the pine needles went in to the monster’s one eye. We defeated it!”

Later, she describes how she can see – just pretend – a sabre-tooth fox. We have to run away from it, she says, so we sprint across the grass. My miniature schnauzer follows us. She squeals that the sabre-tooth fox is on her head. The magic to defeat it is fresh mint, handily growing in a pot beside the garage. “Get some mint! Quick!” she directs, and I run to take a few leaves from the plant. She relaxes when I place them on top of her head. “We defeated it!” She dances in victory. We’re a good team.

I still think I probably don’t want children of my own, but I don’t exactly not have a kid – I’m not a parent, but I’m not quite not a parent-ish person either. I spend a lot of my time participating in her childhood by playing with her, cooking for or with her, and simply sharing life with her. She loves eating at restaurants and cafes and so do I. The Mongolian barbecue place where she can select her own vegetables, noodles, meat and sauce is her favourite. She gleefully tried the yakitori sticks I ordered at Tanuki’s Cave when we visited Auckland. She’s good company, this kid.

I don’t like the word “step-mum”, but I understand it’s a societal shorthand for what this is. I don’t want to be celebrated on Mother’s Day, because I’m not her mother. I’m not any kind of mother. I’m her Jazial. She’s my favourite girl. Dating a man who has a young child is like being in love twice, in two different but complementary ways.

I don’t need to say the right thing to her. There’s no such thing as the right or perfect thing to say. I think in the harder moments that I don’t know how to be a parent, or how to be the not-quite-parent-ish person I am in her life, but I do know how to be compassionate and kind to another human who I care about, and that’s enough. I’m pretty sure women who grow children inside their own bodies don’t know what to say to their kids sometimes, either. We’re all parenting imperfectly whether we’re related to children by blood, by marriage, or simply by love.

Being myself, I’m slowly learning, is enough. Giving her my time, love, attention and interest is enough. Maybe when she’s 14 she’ll feel free to tell me something that bothers her, perhaps a worry about her friends at school, because she’s learned I’m a safe person.

Or maybe when she’s 14 she’ll hate me for a while, because she’s 14. That’ll be OK too. I’ll think back to how I chose to breathe deeply instead of screaming on the snowy mountain. I’ll always try to make the best choices I can to help her through her life, putting her needs ahead of expressing the more childish fleeting emotions I might still feel inside sometimes. She’s teaching me how to grow up, too.

I’m here for her, however life turns out. And no matter what name society puts on our relationship.

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