Don't diss our abilities

19 April 2019

 Mariella Bucci in conversation with Nickie Miles-Wildin

As Nickie and I sip our coffee and snack on chocolate buttons in a rare moment of quiet on the Curve Mezzanine, I often have to adjust my posture or roll my shoulders to remain comfortable. We have both just seen TANYA, and I am acutely aware that sitting upright in a fixed position for over two hours has sent twinges of pain through my back muscles, and even brief numb patches on the back of my head where the nerves have gone dead. This is common for me, and even more common as I want to work in an industry where sitting in one place, merely observing, is a foundation of our experience as theatre-goers. It’s one of the many ways in which both Nickie and I, as disabled artists, have to work to create our own accessibility in the arts.

I was born with congenital muscular torticollis, and over time have developed a form of kyphosis as the pressure from the shortened muscle has increased my chronic back pain. I only recently began to attach these medical terms and by extension, the word ‘disabled’ to myself, because it’s such a social taboo. Similarly, Nickie was diagnosed with arthritis when she was three and a half years old, and in her youth saw her condition and her wheelchair as a negative thing which prevented her from living a full life. This changed when she took disability equality training at twenty-one in Southampton: “The way we look at disability in our lives, and also through the arts, is through something called the social model of disability. An easy way of thinking about it is, ‘My arthritis isn’t the issue. I’m disabled by stairs, and the attitudes that people give me.’ So the social model for me is stairs and stares. When I found that out, it completely changed my life. I saw my wheelchair as a positive thing; a way of getting around. Rather than being the thing that prevents me from getting into places, it’s those places that are preventing me.”

This idea of staring, and the degree of ownership that is performed on disabled bodies in a social space, is one that resonates deeply with me. As I say to Nickie, my disability is relatively invisible, but still an aspect of my physical appearance, and whenever I met someone new – essentially, this entire week – part of me is always on edge, waiting for the, ‘So, what’s wrong with you?’ She agrees wholeheartedly, saying, “It’s society that makes us feel like it’s the elephant in the room, that it’s Voldemort, that it’s That That Shall Not Be Named.” We laugh over the metaphor, but it’s true. It proves the social element of disability when Nickie explains why she loves working with young people, because they don’t have that barrier. We both actively want people to ask about our disabilities, because that is our form of recognition in this industry: “I know there are some people that don’t like being questioned, but for me I’m all about conversation! It’s about stories – I work in theatre, I tell my own story, I tell other people’s stories. It’s just about being open, and I think that’s how people learn.”

Nickie never let her love of theatre stop her from entering that world – when youth drama clubs were in inaccessible buildings, she put on shows with her sister and cousin at family events, and when going to university on the side of a Welsh valley, she switched her regular manual for a power wheelchair. This kind of resilience is inspiring to me as a young disabled artist, and especially as I am now beginning to write my own verbatim play about growing up disabled.

In one of the many warming parallels of our experiences, Nickie tells me of her university show, Three Foot off the Ground, which went to the Edinburgh Fringe in 1998. “I had the audience enter the space blindfolded, so they all had to rely on me or someone they were with, to show that element of being disabled. They were brought into the space, we separated them up; some people had an untuned radio in their ears, others we sat on random chairs around the space, and I just read bits of my work. It also meant that people couldn’t judge me by my body – it wasn’t to show blindness, it was to give me power. It caused a bit of a stir when I did it with my fellow classmates, to the extent that no-one spoke to me for about a week. When we had a big discussion about it, they came out and said they just felt really attacked by what I was saying, and I said, ‘Yeah, well now you know how I feel.’”

From these humble beginnings to the 2012 Paralympics Opening Ceremony, our chat continues to prove the power of our bodies. Nickie constantly refers to disabled people as our ‘tribe’, and I love that concept – a sense of belonging not external to society, but within it, linked by our lived experiences. As Nickie keeps repeating, and I start believing, it reinforces a positive connotation and sense of pride with disability, rather than all doom and gloom, which is what people always seem to want to put on us.

As Nickie describes, the crux of that pride came with playing Miranda: “We owned the world. It was a staging of seventy thousand people, and then half a billion watching us on the telly. And it was a proper celebration, a proper party. I just remember at the end, when I flew out of the stadium to supposedly break the glass ceiling, just hearing the massive cheer go up, and I think it was at that point I was like, ‘Yep, we’ve done it. We’ve fucking done it.’” These moments are what we live for as disabled artists and hearing her talk like that brought up a well of emotions that stayed with me for long after. At the beginnings of my journey, I am still learning to find that pride and acceptance in the way I am, even if I have always been this way.

As our conversation closes and as great as everything seems, Nickie and I both know the fight is far from over, and as a disabled community we have already done so much to create our own spaces. We discuss the work of Graeae, one of personal heroes Mat Fraser, and Nickie’s own company TwoCan, who as exclusively disabled performers are already breaking barriers and making disability more present. But there’s only so much we can do on our own – the industry has to let us in at some point. “‘I don’t know how to work with that person with that impairment.’ I still hear that from the big training establishments. My response to that is well, it’s got to change. If you’re not going to train those people up, they’re not going to be able to get any jobs. If we don’t see people on our TVs or our stages, being allowed to play the actual disabled jobs that there are, then drama schools aren’t going to be opening those doors. It is a massive, vicious circle.” The debate on non-disabled actors playing disabled roles is one that crosses multiple social identities, but me and Nickie both agree that for us, it is non-negotiable. Our lived experience is one that a non-disabled person would never be able to understand, and until we can represent ourselves, and even roles not originally intended for disabled performers, we don’t want someone speaking for us.

Our chat ended up being half an hour long, and to only present the highlights in this article was an impossible task, as everything Nickie said overwhelmed me with emotion. The experience of hearing someone speak so positively where I’d only heard others speak negatively has set me on a new path, and I already hold my head a little higher, and my back as straight as I can. At the end, I asked Nickie what is the best advice she had for me as a disabled, female director. “Find your tribe.” I think I have.

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Image credit: Nickie performs in the 2012 Paralympics Opening Ceremony