Style Voices

Monday 16 September 2019

Ciara O'Connor: 'The day I became an accidental activist'

When wheelchair-user Ciara O'Connor shared a bad personal experience on Instagram, she didn't expect social media to erupt

Stock photo: Chris Ratcliffe/PA
Stock photo: Chris Ratcliffe/PA

Last week, I found myself in the middle of a Twitter storm. I went to an exhibition at London's Tate Modern by Icelandic artist Olafur Eliasson. It was a collection of interactive installations which played with water, light, flame and mirrors. It was meant to emphasise bodily experience, facilitate social interaction and inspire real world action.

When I got to the final installation, Your Spiral View, an eight- metre tunnel in which visitors find themselves within a kaleidoscope, it had two steps into it, so it was a no-go for me.

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My friend Alice was determined, though. She felt sure we were missing something, that surely the Tate had made provision for the likes of little ol' wheelchairy me. After all, as the director of exhibitions reminded me days later, they are one of the top-10 most accessible tourist attractions in the city.

The attendant responded to her question about a ramp spitefully. He smartly suggested I go around the outside. Anyone who has ever looked at the outside of a kaleidoscope will know it somewhat misses the point. In the moment, I didn't really care. If I got upset every time someone was mean about me and my wheelchair, I wouldn't have time to eat. And, anyway, I'd already moved on to the next and final room, an 'Expanded Studio' showcasing some of Eliasson's other projects on an enormous pin-board - architecture, dance programmes, cook books, articles, speaking engagements. Reviews tell how this room revealed the depth of research, the deep engagement with society that goes into Eliasson's 'deceptively simple' art.

And that's when I got angry - all this lofty proto-academic talk about what makes 'good' art, about how it was time to move to more 'non-quantifiable' criteria when the artist hadn't even mastered the very basics: does it actively exclude paying visitors? The more I read, the angrier I got. It was, in short, bulls**t.

This is not the most egregious example of ableism I've ever encountered: in the last couple of months alone I've angry-cried, watching my plane take off without me because the airline (suddenly) didn't like the cut of my wheelchair; I've asked people to please direct their questions about me to me, rather than to whoever happens to be (standing) near me; I've shared the road for half a mile with cars travelling at speed, because every precious dropped kerb had someone's car parked across it.

I've experienced ableism that threatens my safety in a very real way. But this ableism, from an artist who claimed to have thought so much about bodies and how they experience art and the world, was probably the most hypocritically audacious.

I saw red and - for the first time - I took it to Instagram. You can see the result here.

It's important to note that I don't have much of an internet presence. I had 300 Instagram followers, who I knew from real life, who were mostly there to see videos of my nephew.

One of those real-life friends is also real-life friends with the activist Sinead Burke and I assume that's how she, fresh from the cover of Meghan Markle's 'Forces of Change' Vogue issue, saw my story and directed her 97,000 followers to it. Over the next few hours, my follower count crept up and the messages came flooding in.

Some were from artists, creators, people on the scene who were also sick of artspeak that was oblivious, exclusionary. The National Gallery of Ireland sent me a love heart emoji.

As the red mist started to dissipate and the reposts started climbing, my heart sank: I didn't think the day I nailed my colours to the mast, when someone more than a bored customer services rep would hear me rant, it would be the lovely Tate that I targeted.

I was mortified: of all the first- world problems, not being able to get into a shiny art-tunnel for the princely sum of £17 and having a bored minimum-wage employee be a bit mean about it, seemed unspeakable. A day had passed and I still hadn't heard anything from the gallery. I did what I was told by people who know about these things and put it on Twitter.

I felt like an imposter: what if my new followers dug around a bit, saw what a bad self-hating resigned disabled I am?

The next day, the Twitter thread had blown up. I was being credited with having 'presented a phenomenology of disability'. I don't know what a phenomenology of disability is. Academics, TED speakers and activists were applauding my sweary stream of consciousness. A tweet suggesting that I act as a guest curator to develop an exhibition on accessibility had gained 200 likes. I can't curate my own Instagram feed.

By day three, I was getting high on my own supply of likes. But it didn't last long - as I scrolled through my inbox, I realised that it all had precisely nothing to do with me. It didn't even have anything to do with ramps, the Tate, or Olafur Eliasson.

Most of my messages were from people like me, who didn't know much about art but knew a lot about trying to exist in a world that chooses to forget about us.

Any one of them could have written my story - some of them already had. They sent me messages like the countless ones I've sent before: "same" or "I've wanted to say this but I'm just so tired". Because that's how ableism works: most disabled people need all the energy they can get to eat, speak, live - there's none left over to bang our heads against brick walls trying to persuade people that we're worthy of consideration. It wears you down.

One woman told me that people do see me, they just choose to look away. Her profile picture featured a little boy with Down syndrome; she'd know all about averted glances.

There was a mother who was a "soon-to-be wheelchair user" with an MS diagnosis and a couple of girls my age with cystic fibrosis.

There was a diabetic who is routinely made to feel silly and small and a nuisance when she asks for information at restaurants.

There were the many, many children of disabled parents, who negotiate inaccessibility every day when trying to give their parents a life beyond food and shelter.

There were messages from HSE employees, frustrated at the 'go around the side' attitudes that stop them from doing their job properly for disabled people.

And then there were the disabled people who, like me, couldn't believe the traction it was getting - because how on earth was any of this news? How can able people not see that most things they do every day are impossible for us? Did they not know that this was the least of it?

On day four, after hundreds of people had co-opted the exhibition's official hashtag #AskSOE to enquire whether the artist really had chosen to exclude disabled people, Studio Olafur Eliasson acknowledged me. "Dear Ciara. Thanks for shouting out loud. I really appreciate that. I did Your Spiral View in 2002 so it's an old sculpture. To acknowledge its original shape while offering full access, I am exploring solutions with Tate. Will definitely let you know when we have news. Olafur." No news yet.

The following day, Tate contacted me on Twitter to say that Achim Borchardt-Hume, director of exhibitions and programmes, was "hoping to speak with me". He apologised unreservedly for the attendant's callousness and told me there had been a process of deliberation around the piece and the decision to include it hadn't been unthinking or uncaring. He said this should have been more transparent.

He was keen to communicate how hard Tate try, how they were proud of being one of the top accessible attractions, how that was 'meaningful' to them.

I listened, but I didn't feel forgiveness, or benediction, was mine to give. I wasn't the only one who'd had problems - I was just the one that, in the end, they couldn't ignore.

At the end of my adventures in micro-viral Twitter-activism, I feel a bit better. It turns out that even the friends and family who know me well feel they understand my life a bit better - and that's always nice. I feel less mad, and a little - dare I say it - empowered. Until the next time I have to arbitrarily watch my plane take off without me, anyway.

Mostly, I now have a much better Instagram feed. The story brought me loads of my favourite kind of people: makers, artists, disableds, and disabled makers and artists.

Eliasson wanted visitors to become hyper-aware of their own body and hopes his art might change how we perceive and relate to the world. I suppose it worked.

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