March 18th: One year since our lives became smaller

March 18th. What a bitter anniversary for us to have reached. A year ago I was trying to make my feelings coherent in the immediate aftermath of Whaikaha’s shock announcement about cuts to flexible disability support and a suite of changes to Equipment and Modification Services. 

It was hard then to find the words for something that I was in the middle of. I settled on the feeling that my possible future - our possible futures - were narrowing in front of us. A year on I feel much the same. We are still in the middle of it without a real end on the horizon. 

The message was clear: our lives, our choices, our freedom was too expensive. None of us would argue with the idea that the budget was overspent but the blame for historic issues was placed at the feet of disabled people and those who support us. We had overindulged, overreached by simply trying to care for each other and live good lives. 

We know the real culprit has been years of underinvestment, the reticence of Government to truly engage with and understand the real level of need and a passive reliance by them on the unpaid labour of family and whānau to fill the gaps. They continue to insist that underinvestment isn’t responsible for all unmet needs, as though this makes it better.

The $1.1 billion they point to as proof they do invest has kept the lights on in our violently under-resourced services, but this gesture - as we know - has ultimately allowed the Government to appease the general public. In the meantime, they are busy investing in a costly consultation process that has the obvious intention to limit both who can access flexible funding and how it can be used. 

The goal appears to limit the lives of those of us already on flexible funding to our homes and deny those of us not already in the system any access at all. This goal will be aided and abetted by statistics that have recently been published which suggest the size of our community has reduced in the last decade. Although not intentional, it will no doubt be convenient that some of the communities, like autistic people, who are some of the newest to accessing flexible funding are also the least likely to be visible in the new data because the measures used focus so heavily on physical functioning. A limitation we have been anticipating since their proposed use in 2018. 

While we are being asked to comment on the financial sustainability of flexible disability support, the Equipment and Modification Services Budget has been quietly capped with no input from our community despite the fact that twice as many of us access these services than access flexible funding. The options on offer and the narrow scope we are being consulted on seem like invitations to advise the Government on which of us is asking too much from life. 

When I attended a consultation hui I found myself reaching for the examples of how the cuts had limited my life. The ones I shared in response to the initial cuts were fears that I would be unable to travel with support workers, buy staff meals and make accessibility adaptations. These things have all been impacted in my life or those of others to varying degrees over the past year and I have heard of incomprehensible, unnecessary barriers to accessing basic disability necessities, from glucose monitors to plastic drinking straws. 

The impulse to look for illustrative examples makes sense. We had to do this to sound the alarm and it has helped raise public awareness of our realities. But offering them up now to a process determined to save money at our expense feels dangerous, that my needs will be weaponised to deny you yours.

The Government has a vested interest in making us seem like a smaller, overly-entitled community. It will justify continued under-investment in our lives, which we are being punished for. The question now is how to respond. 

The truth is that after our initial work, outrage and energy we have all had to turn our attention to grappling with the potential or real impact of losing support. We had to get used to the new landscape of disability support. Our responses have become individual and self preservationist, and while absolutely necessary it has taken some heat away from the Government.  

As we respond, we need to be consistent in reminding them that there are more of us. Those of us being inadequately served by now inflexible funding, those of us being frozen out of residential care, those of us sedated on beds of under resourced hospital wards and again those of us not able to access any system at all. We have to remind them that there aren’t deserving and undeserving disabled people. There’s just a community with different needs. We have to remind them that it is flexibility of lives, not just budgets at stake. 

This is a taxing ask in itself for a community like ours, low on spoons, resources, time and representative power. 

But even as we do this, there is a chance that the fate of flexibility has already been decided. Beyond the consultations we are going to have to ask what more we are willing to lose in the name of the disabled future we all have a right to. One where we are all supported to live truly good lives. With the loss of support a real and looming risk, it is difficult to think about doing anything other than ensuring I can get from home to work. 

I keep asking myself what disabled resistance looks like when these supports are so fundamental to daily life? My life is, our lives are, only as good, as functional as the support is. We fought for flexible support because many of us lived through the horrors of institutional care and many of us still rely of on solutions outside the system. Whānau have published a call for an apology in recognition of the year we have all been put through. How do disabled people ask for this and more?

How does a community strike from our own lives? Where workers can withhold their public labour, ours is the quiet private labour of living. How do we make this matter to a Government quite content with the idea that our lives need only take place in the distance between home and the supermarket? 

As I was shaping this piece, a friend sent me a picture of disabled Americans crawling up the stairs to the Capitol building demanding their rights. Something they may find themselves having to do again as attacks on diversity, equity and inclusion rage. But it reminded me that disabled people do fight back. And as we find ways to resist that are fit for Aotearoa how do we care for each other through it, modelling what the system should already be doing.

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