Everywhere I go, I speak of it

the power of finding the words for our experiences

It is rare to go more than a couple of days without speaking of it. Every time I speak of it, I am told of 2 or 3 people who have it. Everywhere I go, people in the room feel it. I am supposed to be silent about it. Everywhere I go, people tell me they thought they where alone in feeling it.

The scale of what we are experiencing is unfathomably large. This often threatens to overwhelm me. In some ways, it is easier to imagine I alone, because then I do not have to think of the scale of the problem. But in facing up to it and in finding the words to explain our experiences, through community, we have greater capacity to respond and resist with care.

Recently, I’ve joined a small group of  other people who are also going through it. In the lyrics of Leanne Betasamosake Simpson: ‘We made a circle and it helped’. We are communing around common words. In the naming we start to try to put words to our experiences. To understand the details of our similarities and differences. To stand in empathy, compassion and solidarity. The words shine light and shatter the shame that grows when left uncovered. The words help us say: This is unfair! Does this happen to you too? What would help you, me, us with this? Why is this happening? What can we do about it?

This quote ‘I hold your hand without touching it’ is from Leanne Betasamosake Simpson’s song Head of the Lake.

This process helps remedy the unfairness of not having the language or resources to make sense of our experience (also known as ‘hermeneutic injustice’¹). The word ‘hermeneutic’ is about the act of explaining, expressing, and translating. We are each others’ translators. Often we are translating what institutions (like doctors, academics and the government) say into something that speaks our language. Often we are translating our embodied experiences into other forms of expression. Holding ourselves through that which enacts violence upon us. In the naming we begin to change things.

This all feels so beautifully summed up by Kerri ní Dochartaigh’s words ‘We have only just begun to speak of you/ (oh how it feels to speak of you)’²

I am speaking of Endometriosis and Adenomyosis. I am also speaking of Pre-Menstrual Dysphoric Disorder. But I could be talking about any experience that is told as if it is purely personal but is actually political. ‘Political’ as in: who gets access to resources. ‘Political’ as in: whose wellbeing, health, life and survival counts. ‘Political’ as in: any experience we need to gather ourselves around.

All this to say, we need not be as alone as we have been taught to be.

Oh how it feels to speak of you.

With care,

Rachel

PS…I love (& need) you

Thank you so much for being around in this first year of Care Curriculum.

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1. Big up philosopher Miranda Fricker for articulating the two kinds of epistemic injustice: testimonial injustice and hermeneutical injustice

2. Cacophony of Bone by Kerri ní Dochartaigh - she is talking about beginning to speak into the world the desire for a child, but her words carry weight into other areas too.