By Henrietta Bollinger*
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Opinion - As a disabled person, choice is never a given. It is a negotiation, it is a fight. It is difficult to overstate how disarming it feels to watch the world, the possibilities and choices you thought you had in life, narrow right in front of you.
Last week, I was planning to travel for my work as a writer, looking into booking my support worker onto a plane next to me so that I could safely fly. Last week, I was looking at adaptations to my workplace bathroom.
Last week, I could buy my support workers a meal if they worked a long shift.
Everyday things I thought I could plan for. I don't know which of these things is possible this week.
For disabled people and whānau, the infrastructure of our everyday lives is being thrown into turmoil by a minister working in our names and a ministry we fought to establish.
On Monday, Whaikaha announced radical and limiting changes to how disability support funds can be spent, as well as changes to Equipment and Modifications Services, which covers things like wheelchair repairs and housing alterations.
These are apparently not cuts. But that is semantics. Having funding but not being able to use it is the same thing, in effect, when it comes to our daily lives.
The changes are being framed as urgent temporary measures for a ministry within days of blowing their budget.
No matter how temporary these changes turn out to be, they threaten to undermine a trust between government and disabled people slowly built over decades. Built on the fragile hope that after all this time we might be trusted to run our own lives.
I have been managing my own disability support since shortly after I moved out of home, roughly a decade ago.
Before I managed my funding, the providers who got me out of bed and support my daily life argued with me about everything from who came into the house to what time I could shower. They were limited in where they could help me to go outside my home.
Henrietta Bollinger's book was published in 2023. Photo: Tender Press
When I moved from boarding in an extended family member's house to a rented apartment I was called selfish because I hadn't considered how hard it would be for my support provider to find workers in town. It would be easier for my support agency if I stayed in the suburbs.
My co-ordinator had other clients to think about. It's not all about you, she said of my life. Who else should it be about?
Individualised funding was a response to this. It is my life, I thought: It is about me. In individualised funding, here was a model beginning to recognise that. Through we had further to go. Not in how far we could push the boat out just how equitable an every day life could be.
These days, I am woken in the morning by one of my disability support workers with a cup of tea and we discuss what I have planned for the day, which in my life can range from a day at home, a day in the office, and travel when needed.
Managing my own support budget, being trusted with it was a revelation.
The imperfect but enabling ways it has worked for me have motivated me to work for increased flexibility in all disabled people's lives.
It has allowed my life in ways many non-disabled people take for granted.
In non-disabled lives when you get out of bed in the morning, where you go, who goes with you, whether you an accept a job offer that includes travel, and what you might buy to make life easier aren't choices promised one day and gone the next.
But in our case, because we need some funded support to realise them, they can be snatched from us.
Flexibility has always come with guidelines. It has never been, as the minister seems to be claiming, been unchecked.
We are not being pulled back to pre-Covid times as she claims we are asking disabled people and families to, at best, shrink their lives and, at worst, we are making their lives untenable.
In 2021, I spoke at the ministers' announcement of a new Disability Ministry we now call Whaikaha, along with a suite of other access changes,
I spoke about how increased flexible disability support managed by a ministry for and by us would change our horizons, allow us to imagine and pursue good lives, rather than "impossible trade offs".
I was hopeful about the future. This is not what that future looks like. This is a massive step backwards into the past. We cannot let it be.
*Henrietta Bollinger is a writer and disabled community advocate based in Te Whanganui a Tara, Wellington. Their first book Articulations was published in 2023 by Tender Press on disabled life.