In this You Are Here commission, Lucille Power takes us for a tense walk through the past, exploring the things we remember and the things we wish we could forget.
You Are Here – peer to peer survivor writing – is Jet’s second survivor writer’s platform; building on the first: Playing With Fire which took place in 2021. You Are Here offers an expanded series of workshops, a survivor writer’s group, via Spread The Word, and a series of interviews for the Wellcome Collection archives.
Content warnings: mentions of chronic illness, death, allusion to suicide, medicine, mental anguish.
Listen along as you read
I make no apology for my words (C) Lucille Power 2024
To live sick, is to live with suffering without end. We are told to listen to our bodies, but what if our bodies answer back with symptoms so vile and strange that it is scarcely believable? “knowledge of how to live with suffering and limitation it cannot cure remains on the margins of medicine.” (Wendell, 1996) When we aren’t believed by those we care about, by the world, and by medicine, what then?
I need you to listen.
Western medicine is failing those of us living with chronic illness. We fall outside the path of diagnostic testing and well-established and available treatment pathways. We do not gain credibility for insisting that we are ill, that we deserve treatments, and that we are living an intolerable life of suffering and pain. “When time travel [of cure] doesn’t work or simply isn’t possible, we need a thousand ways to process the grief”. (Clare, 2017)
Living sick is finding ways to get through time, unwell. It is being forced to develop resourcefulness in the face of prejudice on every level. It is to live with the admin of the sick, the begging bowl of not being believed by the state, the trauma of not being believed, time and time again by the medical profession. It is to learn to live in the isolation reserved for those too ill to work, socialise, or be in the world in the ways others take for granted.
“I have spent too many days in a place beyond living, watching hours of reality TV…. I am too sick to have employment, attend any school, or live independently without treatment or cure”. (Munson)
When I applied to You Are Here, it was not as a writer, but as someone who had been an artist/performer for three decades, no longer able to work in this way due to ill health. My concerns were that my writing might constitute a diary splurge of my life. I knew that I wasn’t interested in only writing my story. I wanted to see what my creative practice might be now, when I can no longer work as a performer. I saw it as an opportunity to ask ‘what now?’
My work as a performer was about meaningful connections, was always fleeting, reflecting my limited energy. Dipping into the world to make work, and dipping out again, to rest, but not to fully recover. Like a momentary breaking of the waves, to then sink below the water again, a return to living sick. For those of us living with M.E./CFS there is no finite recovery.
So what now, now that I live doubly sick, with Long Covid in addition to M.E.? What now, when even a fleeting performance practice is out of reach?
This is a beginning of sorts.
Here, for now, this writing is my creative practice. My words, written and spoken.
In Peer Support training to support others with Long-Covid.
In writing about my experiences living sick. In reading the words of others living sick.
My work has sited itself in meetings, around provision for Long Covid, asking ‘How do we use Long Covid to change how the world sees chronic illness?’ I’ve spoken of my decades living with ME, the isolation, the lack of support. I’ve spoken about the effects of stigma, and of not being believed.
So here is my work, now. In all of these words. This really matters.
In creative approaches to adjusting my life. In this process, I have begun to ask ‘is there a way I can be more present in the world, be able to embrace what I’d like to do’ or ‘can I find new ways of doing things?’. My practice is requesting breaks in meetings, being practical about pacing, and beginning to learn what adjustments I might need in order to exist outside of my bedroom. My practice is in positively embracing ‘crip time’ in my life. “rather than bend disabled bodies and minds to meet the clock, crip time bends the clock to meet disabled bodies and minds.” (Kafer, 2013)
Why does it matter so much? Why do I come back to this, again and again? Because M.E. /CFS has a difficult and deeply troubling history, in medicine, and in society. One riven with gender, race, and class bias. One that has caused suffering, one that has caused death.
It matters because it has taken me thirty years to get to this point. It has taken me this time to be able to separate out the stigma, shame, and pain, in order to be able to write about my experiences, to begin to uncover what I need to say. Why, when we are suffering, and when we are at our most vulnerable, is there no care?
Knowing that this matters helps.
Sometimes I imagine a world where the illnesses I live with have proper treatments. Where we retain our expectation that we will be listened to, we will be heard, and we will be believed. That we will have proper healthcare. That we will be statistics that are fully formed, rather than just part of a partial number of recorded diagnoses that few are interested in, and that doesn’t reflect the people who never got a diagnosis.
So I wonder, how do we live sick, how do we
learn to live with the grief, the loss, the pain and stigma, to inhabit a space of radical acceptance? Maybe ‘Crip Time’ offers us that possibility. Perhaps there is a space of being where we can harness the skills we have developed, of resourcefulness, survival and endurance, to create a space outside of normative time.
“How might we celebrate Crip Time as a resistant orientation, one that causes us to reimagine what can and should happen in time, how then, do we celebrate it, whilst allowing ourselves to feel its pain, its melancholy, its brokenness?” (Samuels, 2017)
Quotes:
- Wendell, Susan. The Rejected Body. 1996 (P137).
- Clare, Eli. Brilliant Imperfection, 2017. (P57-58).
- Munson, Peggy. The Invisible Panelist. 2022. disabilityhistory.org
- Kafer, Alison. Feminist Queer Crip. Bloomington: Indiana University Press, 2013.
- Samuels, Ellen. Six Ways of Looking at Crip Time. 2017
References:
“Crip Theory”: “a blurring or merging of queer theory and critical disability studies. Crip theory explores how the social pressures and norms around ability intersect with the social pressures and norms around gender/sexuality.” Robert McRuer and Carrie Sandahl are credited as being academics first credited in the creation of this academic field.
Critical Disability Studies Collective, University of Minnesota’s ‘terminology’ page: https://cdsc.umn.edu/cds/terms
Crip Time:
Alison Kafer first coined the term “Crip time” in her book, “Feminist, Queer, Crip”
“Crip time is flex time not just expanded but exploded; it requires re-imagining our notions of what can and should happen in time, or recognizing how expectations of ‘how long things take’ are based on very particular minds and bodies. Rather than bend disabled bodies and minds to meet the clock, crip time bends the clock to meet disabled bodies and minds.” A.Kafer ‘Feminist, Queer, Crip’ 2013
About the author
Lucille Power is a queer non-binary performer, writer and activist, working to change how the world views chronic illness. They have lived with M.E./CFS for the past 30 years. They also live with Long Covid.
They have been making performance, facilitating workshops, and producing their own projects for 3 decades. They use a collaborative approach to making, and their work has been described as multi-layered and complex.They create non-hierarchical, non-judgemental and fluid learning spaces, challenging heteronormativity, that value artist co-collaborators and audience members alike.
Their ‘crip’ art practice is concerned with questioning ableist assumptions, and hierarchies of productivity. They work to enact change through writing and talking about their lived experience of illness, and the systemic changes urgently needed in how ill people are treated, by society, the medical profession, and the state.