Care Seekers: How legislative inequality, and decades of inaction, undermines access to care in Aotearoa
Shattering is a universal experience, but it also exposes power structures. You realise who is protected and who is marginal, who is listened to and who cannot be seen.
- Olivia Lang from Funny Weather, Art in an Emergency
Vulnerability can emerge within resistance movements and direct democracy precisely as a deliberate mobilization of bodily exposure.
- Judith Butler from Rethinking Vulnerability and Resistance
Being diagnosed with a Rare Disorder as an adult has been a confronting experience. Hospitals that once contributed to care for acute medical events, do not function well for long term support. Schemes that fund private rehabilitation, with weekly financial compensation, are exclusively for those with injuries caused by accidents. People with more complex, life long, needs are left to navigate Aotearoa’s social security system.
Rare disorders impact an estimated 300,000 people in Aotearoa. Reviews have found that people with rare disorders are disproportionately impacted by negative health outcomes and the systemic failings that perpetuate health inequalities. After 20 years of advocacy, a strategy for supporting people living with these conditions has finally been announced, though there is no plan for it’s implementation.
At 6 months old, I was diagnosed with a Wilms Tumor, resulting in the removal of my kidney, and chemotherapy. Cancer at this age is itself rare. As a child, I broke my nose, finger, and elbow, dislocated both elbows and my shoulder. In my teens I had multiple hip and knee injuries that resulted in a stress fracture in my lumbar spine. All of these were treated as accidents and injuries by ACC, with my parents picking up the not insignificant remainder of bills.
Since then, my days have been plagued by chronic pain, struggling to exercise as I’d perpetually injure myself. As a young adult I began to have digestive issues, unable to eat as I had my whole life, steadily losing weight until I could no longer work. Eventually becoming suicidal as no doctor could ascertain what was happening. It wasn’t until I was 28, at least 14 years after initial symptoms, that I was diagnosed with the rare disorder, hypermobile Ehlers Danlos Syndrome. Being diagnosed is a privilege as through family support, I was able to visit a private specialist. Getting an appointment, let alone a diagnosis through the public system is notoriously difficult. The diagnosis was an immense relief as it gave understanding to my experience. However, as a result the state funded access to care I’d experienced earlier in life effectively ended or has been woefully inadequate.
Due to the inequalities within the Accident Compensation Corporation’s framework, people who are disabled due to an illness cannot access the scheme. An issue that has been openly discussed in Parliament since the 1967 Owen Woodhouse Royal Commission, which recommended a yet to eventuate, radical revamp of ACC. Former Prime Minister Sir Geoffery Palmer says the issue with ACC funding impacts anyone with a disability related to an illness rather than an injury. Stating that the system creates two classes of disabled people in Aotearoa, those who receive generous amounts of compensation and rehabilitation through ACC, and those that are left to deal with the inadequacies and injustices of the Ministry of Health and Ministry of Social Development.
Denied access to ACC, I was referred to the Waitematā District Health Boards Chronic Pain Service. This required the completion of 3 multipage questionnaires, to justify the level of pain I experience. The first in person consultation was held in a converted kitchenette, inside North Shore Hospital, and included another questionnaire. Radio New Zealand reports on the impacts of under-resourcing across district health boards. Top clinicians say chronic pain services for one of the country’s largest patient groups are being starved, crippling lives and unnecessarily burdening families and society. Despite one in five people suffering from chronic pain, it is the leading cause of disabilities in Aotearoa, where early intervention and specialist treatment could help many who are suffering to live better lives and keep their jobs.
When I ended up bedridden and unable to work due to my declining health, I asked the Ministry of Social Development’s, Work and Income for help. A painful, eye opening experience. Leaving the Queen Street WINZ, I felt anxious, stressed and humiliated. Perpetually having to justify my circumstances, despite having the requested medical certificates and proof of costs. It took two weeks and several follow up phone calls to finally speak with someone who confirmed the support I was entitled to.
In that time I had appointments with a cardiologist, GP, psychotherapist and physiotherapist, was referred to a naturopath, purchased medications and paid for unfunded blood tests. The Job Seeker Support (deferred), Accommodation Supplement, Temporary Additional Support and Disabilities Allowance that were offered barely covered regular living costs, let alone medical expenses. In a follow up appointment, where I again presented proof of costs, I was told, that’s just the way it is, there is nothing we can do about it, please leave.
Several years have passed since that initial appointment. In that time I’ve written letters advocating for myself, and for legislative change, to the Office of the Auditor General, Carmel Sepuloni, then Minister for ACC and Social Development, Chlӧe Swarbrick, Shanan Halbert and several to the Ministry of Social Development. In my last call with WINZ, I was told I had the highest medical costs this particular employee had seen but that my application for a disabilities allowance was a waste of time and the support I was receiving would be stopped, due to my partner's income being over the threshold. We had been together for a year, and Emily was now expected to be responsible for all of my medical expenses.
The introduction of free market, neoliberal ideology and policy to Aotearoa in the early 90’s paved the way for the circumstances people engaging with the Ministry of Social Development now face. In 2017, the Labour, New Zealand First coalition came into power, with a confidence and supply agreement from the Green Party. Part of that agreement was to reform welfare in Aotearoa, leading to the formation of the Welfare Expert Advisory Group and the commissioning of a report, Whakamana Tāngata - Restoring Dignity to Social Security in New Zealand. The advisory group was chaired by, now Governor General, Dame Cindy Kiro, who said of the resulting report: “Our review of the current system has led us to the clear and unequivocal conclusion that fundamental change is needed. We cannot solve the existing problems, let alone create a system that will serve future needs, through further ad hoc amendments or marginal changes.” In an opinion piece for Stuff, India Logan-Riley, wrote that the government's inaction on Whakamana Tāngata, despite openly acknowledging that benefits aren’t enough, is a continuation of the cruelty shown by the crown since colonisation.
Constitutional reform
In 2021, iLiana Fokianaki, a curator, theorist and educator, wrote about how the Covid 19 pandemic has placed care at the forefront of people’s minds and exposed the functions of the nation state. Pointing to the industrial revolution, imperialism and colonisation as when ideology and technology positioned self-care over and above Indigenous practices of collective care. Consequently, the circumstances much of the world finds itself facing today is with systems of Neoliberal selfcare, rooted in the legacy of hetronormative, white, Western Enlightenment.
Here in Aotearoa, Hemopereki Simon, an academic specialising in indigenous politics, settler colonialism and indigenous development, advocates for constitutional reform based on the perspective of Ngāti Tūwharetoa, an iwi who never signed Te Tiriti o Waitangi. Simon’s Te Arewhana Kei Roto i Te Tuma, The Elephant in the Room, clearly demonstrates the need to question the white patriarchal sovereignty of the state here. Simon describes the Crown's position as at best, shaky, illegal and an unfounded claim based on racism and possession. This position ultimately stems from the Doctrine of Discovery, a piece of law developed in 1493 allowing European countries to develop their empires by giving the right to dispossess and commit genocide against peoples who were not white and not Christian. It is upon these foundations which the Crown and its Entities are built. Simon is calling for reform based on the idea of providing for social betterment and the collective good, with restitution and social justice in mind. This may include rethinking the way in which we undertake healthcare, through to how people are punished.
In their book Health Communism Beatrice Adler-Bolton and Artie Vierkant critique neoliberal capitalism through the lens of health. Arguing that when society is organised around the primary goal of ensuring maximum extraction and profitability, illness is seen as a drag on productivity. Adler Bolton and Vierkant argue that neoliberal logic presumes that ill health, disability, and impairment are located only in the body and not also in the broader social, political and geographical context that comprises an individual's social determinants of health. Thus creating a precarious surplus class through intentional, organised strategies of abandonment. Achieved by the deliberate manipulation and disproportionate dispossession of resources from Indigenous, disabled and poor communities, leaving them more vulnerable to adverse health outcomes.
Johana Hedva’s Sick Woman Theory, born out of the frustration of not being able to participate in the Black Lives Matters protests of 2014. Sick Woman Theory is for many people, what I relate to the most, is that it’s for those who were never meant to survive but did.
Hedva frames our perception of health as such:
Sickness as we speak of it today is a capitalist construct, as is its perceived binary opposite, wellness. The well person is the person well enough to go to work. The sick person is the one who can’t. What is so destructive about conceiving of wellness as the default, as the standard mode of existence, is that it invents illness as temporary. When being sick is an abhorrence to the norm, it allows us to conceive of care and support in the same way.
Hedva considers how people who are unable to take to the streets can engage in political protest. “How do you throw a brick through the window of a bank if you can’t get out of bed?” A highly relevant question for someone severely underwhelmed by the quality of care provided by the state in comparison to that experienced previously. Due to the nature of chronic illness, an illness that lasts a lifetime, this lack of care becomes increasingly imperative.
The inability to access any effective or meaningful care has only detrimental impacts on my health. Since WINZ cancelled my support, I’ve been unable to access counselling, GP visits, nutrition support, physiotherapy, or pain medication. All of which are recommended by the Ehlers Danlos Society to help patients lead full lives. As a result, I’ve experienced physical deconditioning, which exacerbates chronic pain. Pain disrupts sleep, causing fatigue, resulting in diminished mental health, impacting my ability to lead a full life. A cycle that is now normalised between my wife and I, placing unnecessary pressure on our relationship and impacting on my ability to progress in my career. Thankfully, I’m currently able to work fulltime, though I live in fear of what would happen should I regress, knowing there is no effective support.
Though successive governments within the House have made incremental moves in positive directions, they’ve only been repealed or stalled by those who come next. The current Government's agenda of ignoring evidence-based, researched advice to fit their preferred ideology is as effective an illustration as there has ever been. Dame Anne Salmond summarises the current situation succinctly, radical inequalities are accelerating, the economy is tanking, the health system and many public services are collapsing, and many New Zealanders are voting with their feet.
Rare Disorders are estimated to impact 300,000 New Zealanders, and Whaikaha believe there to be one million people in Aotearoa with a form of disability. If the Crown truly wants to deliver better health outcomes for all and help people be successful in their lives, they need to acknowledge their failings, and have the political will to legislate for change across the multiple Crown Entities that intersect with how people are cared for.
Aotearoa needs bold decision making to bring our legislation into line with UN declarations for people living with disabilities and rare disorders.
Anton Maurer is an artist and educator from Tāmaki Makaurau.
Bibliography
1. Shivas, Olivia, “Kiwis with rare disorders want faster progress on ‘life or death’ health strategy” Stuff November 6th 2022
https://www.stuff.co.nz/pou-tiaki/130340737/kiwis-with-rare-disorders-want-faster-progress-on-life-or-death-health-strategy
2. “Time for a Royal Commission into accident compensation”, Radio New Zealand, October 30, 2020, https://www.rnz.co.nz/programmes/the-detail/story/2018770620/time-for-a-royal-commission-into-accident-compensation
3. “Clinicians warn of suffering from gaps in pain services” Radio New Zealand, October 22, 2020, https://www.rnz.co.nz/news/national/428913/clinicians-warn-of-suffering-from-gaps-in-pain-services
4. St John, Susan, “What I wish Sepuloni had said on welfare” News Room, May 15, 2019 https://www.newsroom.co.nz/2019/05/15/585062/on-welfare-what-i-wish-sepuloni-had-said
5. Logan- Riley, India, “A just transition is more than just retraining workers” Stuff, April 13, 2021 “https://www.stuff.co.nz/environment/climate-news/124759587/a-just-transition-is-more-than-just-retraining-workers
6. iLiana Fokianaki, “A Bureau for Self-Care: Interdependence versus Individualism”, e-flux journal, #119 (June 2021)
7. Hemopereki Simon, “Te Arewhana Kei Roto i Te Ruma: An Indigenous Neo - Disputation on Settler Society, Nullifying Te Tiriti, ‘Natural Resources’ and Our Collective Future in Aotearoa New Zealand,” The e-Journal on Pacific Indigenous Issues 9, (2016): 55 - 119
8. Margaret Mutu (Ngāti Kahu, Te Rarawa and Ngāti Whātua nations) (2019) ‘To honour the treaty, we must first settle colonisation’ (Moana Jackson 2015): the long road from colonial devastation to balance, peace and harmony, Journal of the Royal Society of New Zealand, 49:1, 4-18, DOI: 10.1080/03036758.2019.1669670
9. Vierkant, Artie & Adler-Boloton, Beatrice. Health Communism. VERSO BOOKS, 2023
10. Johanna Hedva, “Sick Woman Theory,” Mask Magazine, January 19, 2016 www.maskmagazine.com/not-again/struggle/sick-woman-theory
11. Anne Salmond, “Hunger Games in the Beehive” Newsroom January 04, 2025 https://newsroom.co.nz/2025/01/04/anne-salmond-hunger-games-in-the-beehive/