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(Image: Tina Tiller. Photo supplied.)
(Image: Tina Tiller. Photo supplied.)

BooksNovember 23, 2023

On isolation and connection when parenting a medically fragile child

(Image: Tina Tiller. Photo supplied.)
(Image: Tina Tiller. Photo supplied.)

In this excerpt from the new BWB Text Reconnecting Aotearoa: Loneliness and Connection in the Age of Social Distance, Kiki Van Newtown reflects on trying to survive an epidemic, and then a pandemic, with immunocompromised loved ones.

Pandemic life has been a prism of overlapping and opposing experiences. I don’t know how to reconcile the two deeply incongruent layers that I look back on, but when I do sit and reflect on the last few years it feels like trying to sew patches onto dissolving blankets. Each stitch lands to the side of where I intend, compromising the strength of the weave. Instead of thick, warm spans of fabric, I end up producing little knotted bundles of softly broken fibres that look like tiny haystacks.

The looking back feels sore. I suppose that’s why my brain invokes metaphors as a kind of psychic cotton wool, a protective mechanism to stop my mind zeroing in on the unequivocal truth of the last three years. If I think too hard it makes me feel like I’m peeling, a fallen log in a forest, slowly breaking down in a pattern and structure of decomposition perfected over billions of years. I feel small and inconsequential and tired.

When Covid hit in March 2020 I had already been dealing with an epidemic for a year. Most people don’t remember but during 2019 there was a measles outbreak across Aotearoa. Over 12 months several thousand cases sprang up with increasing regularity. Two people miscarried pregnancies due to infection. In October the outbreak was transported to Sāmoa, where 79 people died, the majority of whom were babies and small children.

While most people didn’t experience any impacts from this epidemic, it completely restructured how my family organised our lives for most of the year. Measles is incredibly infectious. It’s estimated that if one person has it, 90 per cent of people around them who are not immune will catch it. It lingers on surfaces and stays in the air for hours. For immune-compromised people, the chance of surviving a measles infection is 50/50.

During spring, when cases were really starting to increase and spread across Aotearoa, I shared multiple updates on Facebook:

2 September 2019:

Hello friends! I’m feeling really terribly scared about this measles outbreak because the people I love who are immune-deficient could die if they are exposed. I know we’ve all got a lot on, but if you can please prioritise getting your MMR booster – it’ll take 30 minutes at your GP and it’s free!!

And 30 days later …

2 October 2019:

Cool cool cool guess we’re never going to anything ever again

This essay is excerpted from this new BWB Text.

The kids didn’t go back to most of their activities for the rest of the year, and we spent the summer assessing very carefully where we could go and what we could do to minimise our risk of exposure to measles. Managing disability and chronic illness is constantly demanding that your wellbeing matters in the face of ambivalence. Being disabled and chronically ill is being acutely aware of how eugenics continues to bloom through legislation, policy and the everyday ways in which we relate to each other.

The first layer I can try and describe is my own personal internal experience, which has been full of expansive hope, freedom and a calm and clarity that I had previously only ever caught in glimpses – launching off a rope swing into a creek as a kid, running downhill through the bush, standing alone on the edge of the Welsh coast, laying like a cornice between the plains of life and death.

I lived in Ōtepoti in my early 20s, up on City Rise. Around the corner on Rattray Street was my friend’s house, a small brick and white bungalow with well-worn carpet and heating. For his birthday one year we built a fort in his lounge, stacking up furniture and using brooms to create apexes in the sheets and blankets. We stayed in there all night, six or seven of us, nestled in sleeping bags and around the couch legs, passing around whiskey and weed and candy and chips. Together we’d built a nest, and that small enclosure felt safe, slow, and eventually as we slept, still. We hibernated together overnight, but I would’ve been happy for it to last a whole season.

When we first went into lockdown this is where I went. To joyful containment. To small walks and a little life. My pulse rerouted my ordinarily frenetic thoughts, and I felt firm on the ground for the first time in a long time. I planned. I did exceptional work. All of the extraneous parts of day-to-day life had been excised and I was able to communicate intentionally, with less regard to social norms and the management of other people’s expectations and emotions. It was completely liberating.

I released an album in May, and instead of playing shows we held a series of 12 Personal Parties with friends and fans, convening over Skype to play a few songs, talk about justice, do tarot readings, and chat about community and mutual aid. These are some of my favourite gigs of my whole musical career, tiny miniatures, intimate and detailed, covering the expanse of distance, and diving right into what it means to be alive.

While most people were lamenting the loss of public “third spaces”, us neurodivergents and introverts were celebrating this recalibration of what social life is supposed to look like. The renovation of digital platforms for connecting and collaborating opened up a precedent for accessibility that I hadn’t previously experienced. Staying home removed the debilitating hubbub of the commute, the workplace, the bar. It reduced the whiplash that exists between the public contortion of trying to move through an unaccommodating world, and the private exhaustion that inevitably follows.

Masked up for whānau vaccinations.

My family went into lockdown a few weeks ahead of everyone else in mid-March. I’d been tracking infection numbers through February, and we’d begun making preparations to go into isolation. While shipping crates around the world were being repurposed for makeshift hospitals and refrigerated morgues, we were gathering tinned foods and flour, and getting vegetable seedlings in the ground. I became a prepper, talking friends through the steps they could take to get organised – refresh your water tanks, make sure your gas bottles are full, stock up on Panadol and ibuprofen.

During this time one of my employers incredulously said they hoped I wasn’t panicking, and then explained that it wouldn’t be tenable for me to continue my contract if I had to work remotely. This one interaction was transcribed over and over across the world as corporations and politicians scurried to downplay the seriousness of what was coming. The denial was messy, and the suggestion of changing the status quo even temporarily was seen by many as absurd.

Those of us already operating in the margins watched a game of tug-of-war play out from the sidelines, as political leaders and billionaires desperately gripped onto the rope, straining against each other with faces like red balloons. But behind the theatrics, beyond left and right, both teams remained firmly committed to the belief that collateral damage is a natural feature of progress. And in the end it was always just number crunching to figure out how many body bags a society would tolerate.

This violent truth was readily apparent to those of us never invited to join a team in the first place. And so without a rope to grab hold of we fell back on the gentle hands of our communities to shelter us from the dark. We assembled together in group chats and on Zoom, rolling our eyes and sharing memes, and asking “how are you doing?”, which is code for “I’m here for you, I love you exactly as you are”.

The second layer is more like a tidal wave at the door. It was the public experience all around me – my family, neighbourhood and community, the team of five million, and billions more scared souls across the world. It was loud and crashing, bringing with it debris that could wipe a whole village out. We were lucky here because our leaders understood that during a catastrophe what people want is calm and firm boundaries, exceptional communication, regular programming to tune in to and some collective laughs. But as the weeks turned into months turned into years, the noise became crueller, more obscene. A waning enthusiasm for public health measures became eugenics lite, which in turn burgeoned into full-on fascism. A neighbour whose kids had been a regular fixture on our trampoline before the pandemic started posting articles about natural selection.

There has been a great grief going around which is antithetical to my own experiences. Initially it was the mourning of “normality”, which is hard to sympathise with when you’ve never been privy to normality in the first place. It was the loss of public life where people could have their existences witnessed, and this landed like a bombshell to those used to defining themselves through the lens of others. All around me friends and colleagues and family were breaking down, and I was the king brat, swanning about in my trackpants and dressing gown, absolutely thriving in a crisis. Finally I was getting some of the solitude I have always felt homesick for.

Backyard birthday during lockdown.

When George Floyd was murdered by police in Minneapolis, the whole world seemed to explode into a revolution. Black Lives Matter rallied people together in the fight for racial justice, and in the protest marches and behind the makeshift shields other injustices were talked about too. This movement became a site for people to start locating and articulating the intersections of systemic oppressions – and disability and ableism joined the conversation.

Suddenly people were thinking about accessibility. Protesters diligently wore masks, event advertising had information about stairs, webinars sprung up in place of face-to-face meetings. Our daily Covid updates had sign language interpreters. We had been plunged into the largest mass disabling event the world had seen in generations, and this visibilising of disability made it politically necessary to consider access needs, and normalised doing so. For a brief window of time it felt like an open and accommodating and just world was easily within reach. And then it all evaporated.

Despite the fact that almost everyone will be disabled at some point in their lives, society teaches us to fear disability. Disabled people are seen as an existential threat, a constant reminder of the temporal nature of the human lifespan. And so through intentional design we are mainly kept hidden, sidelined, our lives cropped and corralled by carefully written policy, our invitation into public life and third spaces always offered with caveats. We are asked to navigate a world of constant and arbitrary barriers quietly, while the very architecture of space and construction of social norms are designed to discourage our participation.

For decades disability justice had by and large been left off the agenda of public discourse, but as soon as Covid hit all attention turned to the disabled community, where leaders and advocates were asked to guide plans and provide education on how to respond to the pandemic. The insights disabled people had honed over years in order to protect their own wellbeing – while navigating unending social and political obstacles – was suddenly respected expertise. At the same time, the existence of disabled people was scrutinised and debated in covert and overt ways by politicians, policymakers and anyone with an internet connection. Fiscal analysis took place, pitting the economy against disabled people’s lives. This is another kind of whiplash all too familiar for those navigating an ableist world, where the value placed on our skills is contingent on the benefit it produces for the status quo, where our right to exist is transmuted into our productivity under capitalism.

The times I have felt most happy and free in my life have all been characterised by solitude, anonymity, social quietness. Once, long ago, I worked as a “house girl” to a very wealthy elderly couple in Wales. I would spend my mornings working in the kitchen, delivering pots of tea to the library, ironing and running errands, before heading off to explore the nearby villages. One afternoon I found myself winding my way up the Great Orme in Llandudno. This giant ancient hill arches up and out into the sea from the north coast of Wales, and halfway around its peninsula the mainland disappears from sight. Up the top is a Victorian church and cemetery, and as I sat there on that overcast day with wind flurries blowing straight through my thin yellow jacket, I felt completely happy and content. Alone, silent, unwitnessed.

Throughout the first lockdown the bare roads were like emptied out arteries, and there was a great drawing-in of breath as we all waited to see what would happen. Would we be revived, would new blood flow through our veins, would we rise from the dead, and as what? Over the coming months we saw the kind of mutual aid flourish which is essential for a just world. We saw government money spilling into social care. There was suddenly accommodation for our rough-sleeping and houseless people, food parcels and an expansion of access to financial assistance.

Our society changed overnight as we stayed home, set up on Zoom in kitchens, bedrooms and laundries across the motu. We all became novice epidemiologists, and there was wide support for the evidence-based responses we took together. We celebrated our essential workers, and shared outrage at their minimum wage incomes. For a window of time many of us got to step out of the grind and into a space of possibility, where we could imagine what other futures might be possible.

This would be a chance for us to untangle what community really, truly means. To parse apart and honestly explore the limits of connection under capitalism, and to acknowledge how neoliberalism is reflected in the transactional ways we are taught to relate. For many of us, being apart and isolated was the greatest show of support and solidarity we’d ever experienced, and I remember during these slow, quiet and delicious months hoping so much that we would never go back.

And then we did. With Covid now circulating throughout Aotearoa, the government removed all public health protections to allow us to “get back to normal”. And so my family, and many, many people I love, are back staying home, declining invitations, wearing masks and RAT testing on an almost daily basis. Seclusion and exclusion pinning us to the margins once more.

The difference this time is that we’ve seen how things can change when there is political will. The veil has disintegrated and we can now look directly across the threshold and point to what is possible. The idea of social care and a world reoriented away from capitalism is entirely within our reach, and we know this because we’ve quite literally just done it. And so while politicians and CEOs are demanding people get back to the office, disabled advocates and activists are also returning to business as usual – advocating for an accessible and just world for everyone.

There’s a secret tree in my neighbourhood, where all the monarch butterflies go to wait out the winter. From one of the strong boughs is a long rope swing which moves in wide ellipses above the grass and dirt. If you stretch out and lean back you can see flowers and globe artichokes spilling from the nearby garden, and at the right time of year, if you glance back up you can see the butterflies begin to reemerge from the branches.

This essay is from Reconnecting Aotearoa: Loneliness and Connection in the Age of Social Distance, edited by Kathy Errington and Holly Walker ($18, BWB Texts). The book can be purchased from Unity Books Wellington and Auckland.

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