On care (as a sixth sense)
by Pao Camba
Better known as love notes to self, and to anyone who spent their entry into adulthood traversing a maze of chronic conditions. This syllabus invites us to re-write a narrative. It guides us to return to our cribs and cry ourselves to sleep. To hold someone’s hand for the first time. To embrace our imaginary and inanimate friends. To shed the idea that we need less care as adults. It asks us, in a body-centric reality, what is embodiment and how does it feel?
Unit 1: Radical Realness
Before I moved to the United States, my early childhood consisted of slipping in and out of hospitals. As my prepubescent body strived to recover from cerebral vasculitis by way of strokes, I developed a very specific relationship with it. This relationship changed as I aged, and over the years the constant need for surveillance and care became embarrassing. I hid all evidence of my medical history from my friends for as long as I could. The separation between my two realities allowed me to control the narrative, to play a role that fed and filled my formative childhood and tween years. It was like dressing up. At one point the pain became harder to mask and the spasticity too abrupt to dissimulate, and my mother insisted that those around me should be aware of my condition. She made it a point to tell my close friends and their parents. In Sick Woman Theory, Johanna Hedva talks about lack of control (and therefore lack of perceived civility) as their body’s “radical realness”. At age 22, I understand that judging the body based on compliance is a language that interprets bodies as mechanical and labor driven, dependent on endurance and capability. At 22 I am able to reject this framework that as a child, I could not.
Unit 2: Eternal Care
There is a difference between wellness and health. Health being your current condition (often referred to as good or bad health) and wellness meaning to be in a constant state of good health (the implied state of a non chronically ill body). Everyone already has health and not everyone can achieve the label of wellness. To be “well enough to-” (work) is a body that responds as a commodity. Seeing the body as ever changing, vulnerable, and always in need of care is a configuration of survival. Wellness as a byproduct of capitalism negates life-long care. By abandoning the idea of assumed wellness, care and support become more accessible.
From a biomedical perspective, it is a combination of treatments, procedures and rest that will heal us. What is referred to as alternative medicine (there are too many healing methods to name) differs from culture to culture and is often clumped into one category that is undervalued and overlooked. In attempts to honor eternal care, I chose to attune myself to reiki, to better understand mind, body and spirit healing as I tried to navigate my own pain threshold. I learned to identify pain and discomfort through emotional sensations rather than just physical ones, in what is called “energy connection to the physical body” (e.g. emptiness and isolation as connected and felt in your ribs). I also trained to become a birth Doula, as an ode to body autonomy.
Unit 3: On being abstract
In Glitch Feminism, Legacy Russell says, “We use body to give material form to an idea that has no form, an assemblage that is abstract. The concept of a body houses within it social, political and cultural discourses, which change based on where the body is situated and how it is read”.
Chronic conditions, such as cerebral vasculitis and spastic dystonia, can affect the body both internally and externally. Vasculitis causes vessel walls to thicken and narrow, cutting off vital blood supply to tissues and organs. Symptoms include fatigue, weight loss, and muscle/joint pain. Spastic dystonia is a neurological condition that is characterized by reflexes and tendon jerks, as well as muscle contractions. Rather than providing excuses and blaming the unpredictable factors of my nervous system, this abstract, non-performative version of the self allows me to claim space and movement as my own. My ungovernable, velocity dependent foot spasms create their own score. Distancing them from an idea of objective referents, they are entirely gestural, they are abstract. A body that challenges convention introduces disruption. We are not born with standards. Pursuing this abstraction rejects illness as transient and acknowledges that vulnerability is the only default.
Love is our medium, the medium we will use for this class and for the rest of our lives. Our toolkit is to remember that grief is sacred and that individualism will only set us back, as healing has always been communal. To explore, both the world and our corporeality. To think of care as a sixth sense.
The first and only assignment, which you’ll come back to at different times for different reasons, is to define, what is a body? Body is a word, a categorization, a performance. It can be flesh but also soul. Allow yourself to shapeshift. Execute a representation of body (or detachment thereof).
Glitch Feminism, Legacy Russell
How to be a Person in the Age of Autoimmunity, Carolyn Lazard
Sick Woman Theory, Johanna Hedva
Braiding Sweetgrass, Robin Wall Kimmerer
Care Work: Dreaming Disability Justice, Leah Lakshmi Piepzna-Samarasinha
The Body Keeps the Score, Bessel van der Kolk