Curating disability, part one: bringing the outsiders in

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DASH is running a three-year Curatorial Commissions programme, which sees three disabled curators take up year-long residencies at mainstream visual arts organisations, with the aim of ‘changing the culture of the visual arts sector so it becomes more inclusive and accessible’. Anna Berry is the first DASH curator in residence, and she is being mentored by curator Jess Litherland at Midlands Arts Centre. This is the first in a series of articles about her experience. This piece is published in partnership with a-n.

artist portrait with installation

Anna Berry pictured with The Constantly Moving Happiness Machine .

Initially, if you will permit me, I’d like to share with you a little about the personal implications of taking on this residency. I promise I’ll come to the ins and outs of what I’m learning curatorially in due course. But for a moment, I’d like to tell you about what the position means to me, and a little of the struggle to figure out what access looks like for someone like me.

At first, I was not inclined to apply. Not that I didn’t love the concept of the residency – it’s such a simple, and yet such a political idea: bring the outsiders in. On the one hand, you can bang on the door, try to get those who write the narrative to see you, to include you in that narrative. But your success in that endeavour depends very much on the climate of the times, and which way the zeitgeist is blowing. Or you can bypass all of that, leapfrog the gatekeepers, and say, “I will create the narrative”. It’s an audacious play towards an endgame of cultural shift.

And it is an important shift to effect. It’s an issue of power. It’s who gets to be in the room. And it matters: diversity matters. I’m by no means an identity politics ideologue, but too many people with the same perspective, no matter how open-minded, inevitably leads to a poverty of ideas.

When you start including people who’ve had a different experience of the world, you actually get a much more interesting output. It’s like doing cross-field research – the disparity of viewpoints creates a kind of virtuous circle that is more than the sum of its parts. But in real terms, this idea becomes quite a political beast. Because it means we need people of different ethnic backgrounds, we need people of different sexual orientations, we need disabled people, we need neurodiverse people to be in that room, with the Big Cheeses, making the decisions.

So, I loved the idea of the residency. But, even with the prospect of full access, I struggled to see it as something I was capable of. It was really the encouragement of others to apply – their faith in me – that allowed me to make the mental leap required to think big for myself. I was then, of course, delighted to be offered the position. Little knowing this would be the thin end of the wedge when it came to paradigm shifts. Taking this on has triggered a relentless and ongoing personal growth that has caught me very much by surprise.

We had a lot of conversations up-front about what my access needs would be, what I can and can’t manage, and much reassurance that things would be arranged around my capabilities, or lack of them. From the outset, my main anxiety revolved around what I term the ‘bum on seat’ inadequacy, familiar to anyone with chronic pain or chronic fatigue. Even with quiet-room rest options, I just can’t put in the continuous hours a normal person can. I often quip that, no matter how intelligent or capable I am, a lump of meat that can be seen in the office for 8 hours a day is more employable than me. I had agonized conversations with DASH in which my neuroses were compassionately indulged by repeated validation that I need not worry: I was not ‘the wrong kind of crip’.

My script, for 41 years, in every part of my life runs along the lines of: push through the pain, push through the fatigue, let none of it show on your face, be perky, never seem like you’re struggling, do not give them a reason to think you’re struggling when a healthy person wouldn’t be. Hide everything. Manage. And I found that every time my quiet room is mentioned, or I am reminded that I should rest when I need to, or I am encouraged to be honest about what I need, I flinch in discomfort.

I have been forced to acknowledge that this script is so deeply hard-wired that I don’t actually know how to be honest about these things. As it turns out, I barely know how to stop dissociating from my own body: this is how I maintain the self-deception that I’m not in pain and not exhausted. Let alone go beyond acknowledging it to myself, in order to confess, shame-free, to another, that in this moment, whatever it is I’m supposed to be doing, I can’t.

In truth, this is a self-reckoning that was initiated before now, though. Contributing to Raquel Meseguer’s work about public rest was a watershed moment. My story was about my frequent coping mechanism of lying on toilet floors, because it is usually the only place I can rest in the public domain. Sharing it was a difficult but cathartic experience. I hadn’t realised how badly I needed to punch a little light into this part of my existence, which had become the repository of so much shame. But when it comes to the residency – what access rider can I possibly request that will unlearn shame?

black and white image of artwork

Entanglement by Anna Berry

I had little internal battles before I was able to admit ‘sometimes I will struggle to recognise faces’, and ‘sometimes I won’t be able to read when you require it’ and ‘I will forget everything that I don’t write down immediately’. But the process of explicitly identifying these issues in order to tell people what my access needs are is a novel and painful process of self-interrogation. There is such an incentive for denial and compartmentalization. An odd trick of the mind, intent on believing that only by recognising these things, am I making them real. Shhhhhh.

In short, it has been a surprise to find out how much I struggle to understand what access looks like for someone like me. How to graciously accept it. What it takes for me, with a lifetime of lack of access, to acknowledge my own needs. It is consciously unwrapping a putrid, festering, unacknowledged shame, and finding the courage to thrust it brazenly into the fresh air. An act of faith that this agonizing process will be the means by which dignity replaces shame.

Of course, the hope is that the legacy of this experiment will have reach for the disabled community – my personal challenges are neither here nor there. But it is daunting to review the big picture, in which I seem to be a grain of sand trying to change the whole beach. How can I make a difference? Is it a responsibility I can realistically shoulder? What can I do but have a little faith that being part of this will mean I am part of a cumulative process of cultural change? So, I will keep focused on the smaller picture. Make those changes within myself. Make my grain of sand a better grain of sand, and hope I can affect the grains of sand around me. And I hope that, day by day, grain by grain, what I’m doing adds up to a contribution.

For more information about Anna Berry’s work, visit her website.