Movements flop when they aren't inclusive and intersectional.
Ask me how I know.
I don’t write this to endorse the systems that pit us against each other for scraps, but to condemn them. It’s important I start with that, because I’ve been accused of upholding the system or sabotaging the movement for simply observing how things work. And before you say anything, I hear the “they aren’t scraps” argument, yes the support you are eligible for is just as meaningful to you as the absence of support in my whānau’s life is significant to us, but I counter with the following: The system is deliberately engineered to give us less than we need, and expect us to just cope without the rest, because that is cheaper and less of a strain on our country’s resources. We are facing a crisis of care-rationing and there is no quick, easy, or simple fix. When, arbitrarily, people with different disability causes are eligible for different amounts of support even if they need the exact same thing, it creates a hierarchy of inequities within our own marginalised community. So, the Crown pits us against each other to fight for scraps. To conclude, shit’s fucked. (Deep breath!)
A classmate and I once spent a week trying to find an academically legitimate way to end our essays with “to conclude, shit’s fucked” and if I put that on the internet, I can reference it in my next one. I’m working hard on a Master of Health Policy, Planning and Service Delivery at the moment cos I thought studying in Wellington from Dunedin would be a real clever idea (it wasn’t). I’ve written tens of thousands of words so far on our disability sector - from Tiriti breaches, to inequities between disabled people, to the categories of disability that just aren’t eligible for funding in our fine country, to policy tweaks that could make support more accessible for left-out groups of disabled people.
Today I want to talk about the inequities, because apparently writing all those essays wasn’t enough for me.
There’s lots of hubbub this year because our ACT-led (feat. NZ First and National) government coalition decided to cut funding to specific categories of disabled people covered by Whaikaha. Naturally, this is nowhere near the bulk of disabled people, but it is a significant group of people whom no one can deny both need, and deserve, support. This group of disabled people never had all the support they needed, but they had a lot more support than other disabled people could access. You can read a lot about these changes on wonderful Substacks written by folk like Dr Bex and Emily Writes.
But what’s left out of the conversation, repeatedly - and in some regions, deliberately omitted - is that so many people couldn’t access this support to begin with. In recent months I’ve had so many conversations with people who just can’t get help.
People with Long Covid whose partners have to quit work to care for them, because they can’t get out of bed anymore.
People who have to choose between their jobs and their children, because they're not well enough for both, but who can’t afford to go without their jobs.
People who have to put their children into state care for them to get any access to the level of disability services they need, only for them to continue missing out anyway.
People who are declined for NASC assessment, even though they can no longer feed themselves, get to the toilet on their own, or shower safely anymore.
People whose kids need teacher aides, but their kids can’t even get the diagnoses they need, so their school is redirecting equipment and property funding into extra teacher aides.
People who can’t even get the funding they need for medical equipment to stop organs from failing, or avoid falling into sepsis.
People who’ve had a disabling health condition for decades, but not been able to access basic testing and diagnosis yet, or not until recently.
It goes on, and on, and on.
Don’t get me wrong, the Whaikaha cuts were fucked, absolutely fucked-up dystopian shit. But so is the lack of support and funding for so many other disabled folk. And as brave, bold, multi-faceted humans, we really can care about more than just one thing at a time. I promise.
I am repeatedly left frustrated and bamboozled by this insistence that the Whaikaha cuts must be the be all and end all of our disability activism. This year, the year of our Lorde 2024, I’ve been told by actual real life human beings who think of themselves as very good people that it is absolutely impossible for us to ensure that our movements are centred on Te Tiriti o Waitangi because it’s existence (and permanence and role as a foundation of this country) is a distraction from the real issues. I’ve been told it’s too political to have people help with our rallies if they support Palestine. I’ve been told it’s too political to have Māori speak. I’ve been told the word “fight” is too political. I’ve been told that if we focus on all disabled people, nothing will change.
I’ve questioned, repeatedly, how it can be true that there isn’t capacity for the whole picture if there are people and activists here, ready, and available to take on the burden of ensuring that we stay focused on disability as a whole while upholding the intersections and individual demands - and yet those people are repeatedly refused the chance to do the work.
It’s easy to paint this as infighting and roll our eyes and be done with it but I don’t think that is the sustainable, inclusive or reasonable option. Do we want to be represented by people who get the vapours every time it’s mentioned that Te Aka Whai Ora’s disestablishment has a direct impact on disabled Māori? Do we want our representation in this movement to roll their eyes at the judicial systems that find that our inadequate disability systems are a breach of Te Tiriti o Waitangi?
We can crow “nothing about us without us” as much as we want, but while the only people allowed round the table are the ones privileged in every other way besides their disability, is our movement going to achieve what we need it to? Or will it flop, burnt out, before the finish line approaches.
As an autistic adult I have spent my whole life anxiously awaiting the time people get too sick of my tendency to recognise patterns, my uncanny ability to identify an issue long before anyone else notices it’s there, and my persistent sense of social justice that compels me to just not shut up until the problem is solved. Then I hyperfocus on trying to solve the problem alone until I entirely burn out, usually just at the same time as a group decides the weird persistent autistic person is too annoying to keep around. And then once I’m gone, the problem eventuates - the work wasn’t done to avoid it, and they’re too sick of me to want my help. I’m really sick of being proven right. I’ve been ousted from the group for requesting (reasonably, but repeatedly) basic inclusion. We’re now at the point in the cycle where I wait and watch for it to burn. I don’t want it to burn. I want better for all of us.
I’m challenging us all to fight for better. Real, actual, genuine better. Because we deserve much more than scraps.