Written by Maica Gugolati
It comes suddenly.
It is unpredictable.
It changes rules.
I suffer from a disease, named fibromyalgia, which belongs to the so medically named: ‘invisible disabilities.’ It is largely experienced by women, and it is medically unclear why. It is defined as a chronic condition of unknown etiology, characterized by persistent, widespread pain, fatigue, cognitive dysfunctions, sleep disturbances and psychological disorders (White & Harth, 2001).
It manifests, despite its commonalities, purely subjectively. It expresses itself completely different, from one female body to another. The absolute relativism of the phenomenological performance of my sickness pushes myself to trust and to base my life on situated and partial knowledges (Haraway 1988), that come from the body.
is a flesh canvas painted by pain.
My invisible scars are permanent and mobile.
I feel them,
you cannot see them.
My body is a field, that mutually welcomes and creates states of crisis. These last ones behave in their excess, as the grotesque of power defined by Achille Mbembe (2008).
According to this philosopher, the power of postcolonialized societies seeks to institutionalize itself in order to achieve legitimation and hegemony. My pain acts like a subalternized power, that fights to legitimize its existence. My body becomes a grotesque playground that dramatizes pain in name of its magnificence. My pain becomes excessive (Butler 1992) and baroque in its manifestation.
In fibromyalgia, my body and mind are in this liminal limbo between health and illness, that instead of being temporal, as liminality (Turner 1969) implies, it is perpetual. The limbo is a creative phenomenon that functions as a gateway between antipodes (Harris 1995). In both my body and mind, trust vs. distrust; optimism vs. melancholia; hyper-visibility vs. invisibility; able vs. disable, cohabit together.
My sensation of the irruptive pain is like the sensation of being beguiled by myself. I cannot “stick to my plans”. They cannot be linear scripts; there is not dialectical evolution to their phases to let me reach an assured achievement and accomplishment.
My plan has to be shaped as a canovaccio theatre play where I am the actor and the director at the same time. My body hosts a dramaturgic play (Schenchener 2002) of forces. I cannot confirm plans, I have to accept not being able to be coherent with my promises.
This invisible dis-ability offers the chance to see lived and performed (Sandahl & Auslander 2005) embodied contradictions that shape the meaning of productive life.
Unlearning (Azoulay 2019) is a way to reverse a role of the normalized milestones that structure the fixed idea of progress. My invisible disability imposes to me the process of unlearning the imperial identification of “ability.”
discussing what should be the Normal.
The plan in order to be successful,
follows the relativity of each ab-normality.
Azoulay, Ariella Aïsha (2019) Potential History, Unlearning Imperialism, London: Verso.
Butler, Judith (1992) “Mbembe’s Extravagant Power”, Public Culture, Vol. 5 (1), pp. 67–74.
Carrie Sandahl and Philip Auslander (2005) Introduction. Disability Studies in Commotion with Performance Studies, University of Michigan Press.
Haraway, Donna (1988) “Situated Knowledges: The Science Question in Feminism and the Privilege of Partial Perspective” Feminist Studies,Vol. 14 (3), pp. 575-599.
Harris, Wilson. “The Limbo Gateway.” The Post-Colonial Studies Reader. Ed. Bill Ashcroft, Gareth Griffiths and Helen Tiffin. London: Routledge, 1995. pp. 378-82.
Mbembe Achille (1992) “Provisional Notes on the Postcolony” Africa: Journal of the International African Institute, Vol. 62 (1), pp. 3-37.
Schechner, Richard. 2002. Performance studies, an introduction. London: Routledge.
Turner, V. (1969). Liminality and communitas. The ritual process: Structure and anti-structure, pp. 94-131.
White, K., and Harth, M. (2001) “Classification, epidemiology, and natural history of fibromyalgia”. Current Pain and Headache Reports, 5, pp. 320–329.