When spoons are at a premium, you have to feed yourself first

As the nearly 14,000-strong petition demanding enforceable accessibility standards was presented at Parliament this year, I was uncharacteristically absent. It felt strange later scrolling through photos having not been there, especially since the fight for legislation has been something that has been on my radar since I first formally started working for the disabled community a few years ago.

Instead, I spent the day tending to some of the mundane tasks that come part and parcel with being disabled. Things that accessibility legislation could improve. But on the day of the petition handover there were other things demanding my spoons. I did those. And then I rested.

By the look of the small, defiant gathering this was the case for many of our community. It felt to me like to get a real impression of the significance and urgency of the change needed, an onlooker should count not just who was there but who wasn’t. The many thousands of absences. The loud fact that the inaccessibility of the world we know so well as disabled people is both the thing that makes this so important and the thing that blocks us from making that exact same point. We can’t make our presence felt, at least not in the ways that non-disabled communities value, see and count. 

As we know this is not just the case at the steps of Parliament. The non-disabled world raises an eyebrow at our presence in everyday life on a fairly regular basis. Making their surprise evident with phrases like I’ve never met anyone like you before, and a whole suite of inspiration porn quips.  All too familiar ways of saying I have not imagined disabled people being in my world.

As much as I am uncomfortably used to being some people’s first crip encounter, it often still gives me a jolt of surprise. My impulse when this barbed compliment arrives is to fight it, to prove it wrong. Really? Where do you think I should be?

I was born in the same year as the Human Rights Act came into force. I was born when institutionalisation wasn’t my automatic fate, and when the new Education Act meant I could attend the same school as my non-disabled sister. While these advances were imperfectly achieved, I have in some ways been gifted by disabled people before me the ability to shrug and say: Why wouldn’t I be in education, my own flat, in a job? This of course is compounded by other privilege like my Pākehāness, the education levels and high expectations my family were able to hold for my future growing up.

All the same, in telling myself and telling the world simply: Of course I’m here, where else would I be? I forget to credit the fights and the energy of disabled people who have come before me. I also forget to acknowledge all the small ways in which daily life as a disabled person is a protest against our historic - and continued - absence in so many places. That we are still not anticipated and still not prepared for in all ordinary places we might dream of being. I don’t easily acknowledge the way that pushing into places where I am still unexpected demands energy from me, and then requires rest.

As we look ahead to what might come next for this legislation, we will need to hold on to our hope for change. For me, it is in the small nod between myself and a disabled stranger, laughing as we pass each other on the street. Oh my god, two wheelchairs on a crossing at once! A small acknowledgment that some people will find it remarkable. Even if other people don’t expect me here, I do. It is disabled people showing up to protest. And it is other disabled people telling me that rest can be prioritised over showing up. 

We will - we must - find a way to make our absences felt.