by Henrietta Bollinger
Mere days before New Zealand’s lockdown was announced, a journalist interviewed my flatmates and I about our concerns in the face of a pandemic. She had done a lot of reporting on disabled community issues, so we trusted her. We glanced sidelong at each other, laughing into the phone on our kitchen table when she asked what we enjoyed doing. I want readers to see you as people, you know?
Erin, Stace and I are all disabled community advocates. Even our ginger cat Wilson is developing an international Twitter following of disabled and/or queer people we intersect with – invested in his mood, health, and hot takes. Our dinner table conversations can move almost imperceptibly from asking, Hey, how was your day?, to analyzing the relevant articles of the United Nations Declaration on the Rights of Persons with Disabilities.
The day we were interviewed, the fear had just become palpable to me – particularly among my disabled friends. We worried about everything from access to food to how the health system would cope. I worried about getting the support I need twice a day. We had started stocking up on PPE – a good move given that none was supplied to us until a week before lockdown ended.
Our flat has been together for about a year now. We have a home that actually meets our needs – something we don’t take for granted. There is nothing like the Americans with Disabilities Act to regulate housing accessibility here. The housing crisis is acute – we rage while watching news items about disabled kids living in garages. My flatmates tell me they’re never moving out.
Living here involves a lot of laughter– in recognition of each other, of living daily with the absurdity of ableism and hetero/cis-normativity. We’re a support network for each other. Like many households, we wouldn’t escape the lockdown without putting some pressure on this precious thing, but for me, it was still the best place to be for weathering this unknown.
The wider word felt heavier than the small one under my roof. Solidarity can also feel like heartbreak. I cried over Facebook posts about the Welsh surgery that wrote to disabled patients asking them not to call Emergency Services, implying this would be more considerate of others. I felt sick reading about a wave of Covid cases in a New York home for disabled people. I stayed up late writing a letter to the British Minister for Disabilities but lost the nerve to send it. I turned my attention to my own situation.
Our Government came to power positioning itself as a compassionate administration. I am grateful for this. I am relieved about the prioritization of people over economy that has characterized the response. Many people are emphasizing that during this time, choosing kindness is essential. Kindness in the context of the pandemic is most simply understood as helping people more vulnerable than yourself.
All the same – the rhetoric of kindness is hardly instantly reassuring to disabled people. Kindness towards us is so often linked to charity and paternalism. It positions us as dependent upon the whims of the non-disabled world to both determine, and grant us our basic needs. I told our interviewer that New Zealand’s response couldn’t simply be about kindness, it had to be about rights.
The lawsuit, Borrowdale v Director-General of Health, questions the legality of our lockdown, claiming that although the order was necessary, it violates the rights of freedom of movement and assembly, which are guaranteed in the New Zealand Bill of Rights. The case has since made it to the High Court, but it feels to me largely like a disruptive, academic exercise. These are far from the rights that my friends and I are worried about right now.
A friend had called me with a shrug of resignation in her voice. She said, “If our medical system goes the way Italy’s has, I just won’t be prioritized.” I didn’t try to comfort her. Perhaps she was being a realist. Kindness is not always enough to keep us alive.
Having to often depend on the kindness of others generally places disabled people outside the non-disabled world’s frame of reference for who and what is essential. Disabled people are essential workers, parents, or otherwise part of the unseen economy that will get us through. The concept of ‘the bubble’ – the central analogy our Government uses to describe how people should limit or expand their social contact – was first proposed by a disabled academic, Dr Tristram Ingham.
Understanding the potential power of disabled people has not made me feel safe, though. Going into lockdown I had simultaneous feelings of vulnerability and responsibility. Navigating my responsibility to my support workers as an employer was not new. In the shifting legal landscape of the pandemic response, the limitations of the system left me alone at critical moments. I didn’t know if I would have a full support team over lockdown, or adequate protections for them if they did work.
My flatmates helped me move through this uncertainty. From my team of three, two support workers continued coming into our home. They became my contact points for everything: making food, picking up extra shopping, visiting my room when a cold cut me off from the rest of the house, providing most of my physical touch, albeit through latex.
How was your lockdown? is too quickly becoming a ubiquitous nicety, one that suggests that this crisis has passed. Outside Auckland – where case numbers are higher – we are experiencing reprieve, easily forgetting how fragile things are, while many disabled people continue to fear the deadly repercussions of relaxing safety measures. I struggle keep my reply personal. The people around me understood my rights, and they were kind. I respond, Well, I was lucky.
Links to articles and sites referenced, in order of appearance:
NZ Herald; ‘All I want to do right now is hide’: What it’s like living in deadly fear of coronavirus, by Kirsty Johnston. March 21, 2020. https://www.nzherald.co.nz/nz/news/article.cfm?c_id=1&objectid=12318306
The Guardian; Welsh surgery apologises over ‘do not resuscitate’ instruction, by Mattha Busby. March 31, 2020.
The New York Times; ‘It’s Hit Our Front Door’: Homes for the Disabled See a Surge of COVID-19, by Danny Hakim. April 17, 2020.
The Spinoff; Unlawful, but necessary and reasonable: making sense of the High Court ruling on the lockdown, by Andrew Geddis. August 20, 2020.
Stuff; Dr Tristram Ingham, the brains behind the COVID-19 ‘bubble’, by Josephine Franks. July 18, 2020.
About the author
Henrietta (Etta) Bollinger is a writer and disability rights advocate. Etta has had poems appear in Starling, Mimicry and Scum magazines and plays staged in New Zealand, Australia and the UK. Etta lives with two other advocates and their sympathetic cat. Etta is currently writing a first book about life as a disabled person.
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