Raquel Meseguer is the Artistic Director of Unchartered Collective, a dance theatre collective through which she examines and shares the lived experience of chronic pain. She was a speaker at Communicating the Arts in 2018. Today, she is our guest at #DoItDifferent, our channel podcast, launched last month. If you miss it, listen to the first episode with Charles Clapshaw, an abstract artist using AI and other technologies to enhance his paintings.
In this episode, available here, Rachel discusses the importance of giving permission to people to experience art in ways that allow them to rest, linger and dream.
Following her first listen of this episode, Raquel has wished to write an afterthought note about a moment in the episode when she says that “if there was a cure pill, [she] would not necessarily jump at it”. You can find her inspiring text here:
“The most beautiful things I look back on in my life are coming out from underneath things I didn’t know I could get out from underneath. The moments I look back in my life and think, “God, those are the moments that made me,” were moments of struggle.”Brené Brown
This is the perfect language to describe my experience of becoming disabled and the journey to get out from under a perceived tragic failure. And when I say ‘get out from under’, I don’t mean to change, fix or cure the circumstance, I mean to understand and live it better.
If I’d made an easy transition into another creative profession, I mightn’t have had to collapse the whole binary of success and failure, or face cultural assumptions around ability and disability, health and illness, what bodies we value and what bodies we don’t, the discreet eugenics wherein we write disability out of imagined progressive futures.
I might not have had to grapple with what it means to live a good life in the midst of pain; I might not have had to grapple with my inability to fulfil society’s expectations of the autonomous, independent individual and the expectation that I overcome, soldier on or transcend my impairment. Ultimately this inability saved me: I had no choice but to do things differently, and eventually to understand there might be great value in doing things differently.
But that took time, the years in the wilderness that I describe in the podcast.
Years that mean I understand in my bones, how hard it is to get out from under something that floors us. Years that mean I am more patient of other people going through their own struggles to get out from under something.
Years when I absolutely exhausted therapies and attempts to get better – that cycle of hope and fear is cruel and I categorically refuse to put myself through it anymore.
Years when I felt like I was treading water in unchartered territory, but where I discovered the discourse and art that would give be the tools I needed: reading the social model of disability was a lightbulb moment for me, when I understood that I was able, but I was also disabled by a built environment and vertical culture not designed for a body like mine. It’s more nuanced than that of course: even if architecture and attitudes embraced horizontality in public, my pain would still dis-able me at times, it would still require that I stop, that I rest, that I abandon certainty, schedules, plans and embrace the precarity of the moment.
So, maybe the comment I made is surprising: that were a pill invented that could cure me, I wouldn’t necessarily jump at it. That might seem like a shocking statement – mainly because our medical model of illness assumes the individual should spend all their time and energy trying to get better, and assumes no value in experiences of illness. The thing is, I really don’t want to un-know what I now know, or un-see what I now see. And as I mentioned in the talk, it is the persistence of the experience that leads me to make the choices and the work that I make.
Just today, a colleague reminded me that within the crip* community there can we an expectation (or demand) that we celebrate all aspects of our disabled experience, and never talk about the difficulties, or the medication and medical community some of us rely on. And so I don’t want to airbrush out the difficulties or pretend that I don’t sometimes hate being in pain. I want to hold space for different perceptions of chronic pain, and I want to articulate what is particular about the experience of chronic pain and ask what knowledge lies therein.
I want to be allowed space for the celebration and the struggle of my experience. Simultaneously. And not have to represent only one, or be judged in terms of only one. As Chimamanda Ngozi Adichie has so brilliantly said: “The single story creates stereotypes, and the problem with stereotypes is not that they are untrue, but that they are incomplete…They make one story become the only story.”
I want to be allowed space for complexity and paradox and contradiction in my experience, and to resist a singular disabled narrative. I want that to be allowed of everyone, for everyone. That is the space I hope to create in my writing, my work and my speech.
Bristol, 22nd May 2020
*crip is a term re-appropriated by the disabled community and used by individuals actively resisting the binaries of normative culture. ‘Crip theory’ denotes scholarship that is “more contestatory than disabled studies….engaged in multiple sites of radical politics” Alison Kafer in Queer, Feminist, Crip. See also writing by Carrie Sandahl.
‘The Restful Museum’ A reflection by James Heaton on Raquel’s keynote at CTM 2018 https://www.tronviggroup.com/restful-museum/