If you become disabled as a result of an accident in New Zealand, ACC will pay for your treatment. But those disabled through medical conditions, illness or genetics are left to pay for themselves. Photographer Becki Moss writes about how this two-tiered system of disability support leaves people like her trying to survive.
I’ve never broken a bone but have always been jealous of those who have. I started getting sick as an eight-year-old and I hated that my friends in casts were so easily treated and recognised to be in pain or needing help, yet I felt invisible.
I quickly realised as a child that bladders and kidneys were not ‘sexy’ organs to have issues with and that it was far more acceptable for people to discuss their asthma or liver problems. No one wanted to hear about years of undiagnosed urinary tract and kidney infections that ravaged my organs leaving them scarred and with low function - it was ‘gross’ or ‘yucky’.
At 11 I learnt how to self-catheterise and then spent the following years hiding it from the world at all costs.
There are two types of disabilities in Aotearoa, New Zealand: those caused by medical conditions, illness or genetic abnormalities and those that result from injury or accidents.
We treat them very differently.
Last Friday I had my 12-month follow up from my pain management course - a three week intensive held by the Auckland Regional Pain Service at Greenlane clinical centre. I caught the bus there because the five-hour parking cost was out of my budget. Everyone else on the course had chronic pain as a result of injuries and therefore had their taxis (and in a few cases, accommodation) paid for by ACC.
They had case managers, physiotherapists and significantly more financial help than I could ever hope for. But we were all disabled by pain - theirs, chronic and mine, acute. It was one of those moments when I cried on the phone to my mum when I got home about the complete unfairness of trying to survive as someone who is chronically ill when it seemed so much more achievable for those who are covered by ACC.
If you saw me at an event photographing, glared at me as I went to use a ‘disabled only’ bathroom or even knew me as an acquaintance - you wouldn’t think I’m disabled.
I look perfectly healthy, I’m slim with an ‘athletic’ body type. Unless you looked carefully for the surgical scars on my abdomen there is nothing to tell you that my body is in a carefully managed turmoil. You wouldn’t know how I precariously balance a range of medication, tweaking them with my doctors to ensure that my blood pressure doesn’t become dangerously high.
You wouldn’t see the pain that comes with endometriosis and hundreds of kidney infections. You won’t see the countless hospital trips (I’ve lost track) and even more moments when I should have been there but steadfastly refused to go and instead stayed at home suffering in silence because that was easier than the emotional turmoil of trying to advocate for myself while at my most vulnerable.
Only a select few people in my life see me at my worst. It’s something I hide from the world because it makes people uncomfortable to see someone sick or in pain and not get better.
Over the last few years, I have started talking more openly about my conditions, about the experience of a young woman fighting for herself to be listened to in a medical system that often refuses to.
Not because I want sympathy or pity (two things that actually make me extremely uncomfortable) but in the hopes that someone else in my position will feel less alone and that we can start to have more conversations about the way we treat invisibly disabled people.
I’m acutely aware of my privilege as a cis, Pākeha, university-educated woman and that is why I am working on a nationwide advocacy system for young women and non-binary patients across Aotearoa - because I know how hard it is to advocate for myself despite my privileges AND despite the fact I studied medical science for three years. It just makes me even more worried for those without those privileges.
Many in the disability sector have been calling for a ministry that is separate from the Ministry of Health to cater for all disabled New Zealanders and I agree with this. I hope the future brings more representation of disabled people in public spaces, in politics and on committees and boards. I want to work towards a future where medically disabled people are not treated differently to those who become disabled by injury of accident, a future with more equity and equality.
Header photo by Daniel Brunskill. Second photo by Natasha H’ng. Words and additional photography by Becki Moss.