Tell me again, why can’t we talk about body stuff?
Your body is your home.
It’s your primary medium of self-expression — your voice, your hands gesturing, making things, touching someone, legs walking toward, stepping away, hips dancing, butt seated, with arms folded — are you angry, bored, worried, satisfied? You breathe…I hear you.
Your body is your receiver and interpreter of the world around you, and the people in it with you.
It’s integral to your life.
How can it be weird, embarrassing, inappropriate, to talk about your bodylife?
What happens inside your body is literally defining your experience of the outside world, and of yourself, and your possibilities.
Our bodies aren’t sealed containers.
They are living— We are living beings.
Nutrition, hydration, elimination of waste, sweating, breathing, menstruating — these things happen in our bodies and outside them.
We make choices about our behavior, buy supplies, clothing, fixtures — we are involved in the care and maintenance associated with these aspects of our body lives.
Why wouldn’t you talk about it?
Why wouldn’t you be interested in ways to improve the quality of your experience, or someone else’s?
Why would it be unusual or unacceptable to share your experience, to ask questions, to get advice? — like you would when it came to any other aspect of your life.
Why wouldn’t it be normal to be interested in the quality of your bodylife?
What stands out for me as I look over 2019 is the conversations I had not had before. The people I let into my life. In person, or otherwise. Questions, gestures, know-how…ideas and emotions they brought into my world that became part of me risking more deeply.
It’s a lot of small stuff really. I’m not saying I even agreed with, or wanted more of their view of things, though some of it was beautiful, brilliant and needed. Just that our interaction became part of my momentum. My expression. Also my capacity and interest in what is not me, in what is possible, if I go further than what I already knew about any of us. If I go slower than sureness about who you are, and what you would be willing to do with me. If I asked you.
What helps you to risk more deeply?
For me, it’s getting feedback. It’s you listening while I try to explain, trip over my thoughts, a rush of air through an unexpectedly open door. And me surprised by what you saw, focused on, or asked for. “That’s not it,” I want to say. “I’m over here. Why are you over there?”
But I don’t ask that. Somehow I know not to. I try not to brute force connection.
I try to just take notes. What can I do with what you said? And just get back to work. Go again. Go deeper. Go again. I hate it when you don’t understand me. I need you in this with me. So, I will keep going, peel off everything that is in the way of me clearly expressing what moves me, so that it moves you too.
Whether I bristle against it, ask you to explain further or just thank you for getting into it with me, you may be transformed by your internal conversation. Or by something or someone in your life that I know nothing about when they are added to the mix sometime later in the week, or whenever, and who knows what that will lead to, or what you will see, or focus on, or ask for the next time we talk.
It is not a switch to turn on and off. Connecting us. I don’t know what it is, but it is not that. All I know is that I have to go deeper into what I don’t know about this if I am ever going to make it happen. So, I’ll keep going, peeling off the layers that have not so much kept me safe, as still.
Recently, I attended a presentation by two artists making inquiries into their bodylife stories, Embodied Scores–the poetics of data excavation in the crip body with Yo-Yo Lin and Pelenakeke Brown . You can see the artists above in the photo. That’s Yo-Yo Lin on the left and Pelenakeke (Keke) Brown on the right, reading a quote from Audre Lorde’s essay, “The Transformation of Silence into Language and Action”.
Their methods of inquiry, art-making and storytelling resonated with me. In addition to thinking further about each of them specifically, their bodylives, and for the first time, intentionally considering the individual experiences of disabled or chronically ill or crip bodies (I had not heard the phrase crip bodies before), as well as internalized ableism, it got me thinking about women generally —not to generalize across our experience— but how the need to transform silences, when it comes to female bodylife, is universal.
When it comes to all bodies, there is so much we’re not talking about from an individual bodylife perspective, where we tell our own stories ourselves. It’s too personal to share or to trust our own experiences, the way we do information, data and opinions, provided by doctors, healthcare providers, political, religious and insurance company policymakers, bureaucrats and profiteers in other industries, scientists, researchers or any other “experts”. 
Though, personally —uniquely, individually— is how we live so how can our personal experience of our own bodies, not be relevant or valued?
Here’s what Keke read to us: “In the cause of silence, each of us draws the face of her own fear — fear of contempt, of censure, or some judgment, or recognition, of challenge, of annihilation. But most of all, I think, we fear the visibility without which we cannot truly live. …And that visibility which makes us most vulnerable is that which also is the source of our greatest strength.” 
Speaking up is not easy. Especially in an environment and culture not designed with us in mind.
What are we gaining in our silence? Or losing in the exclusion and pain of not being seen or heard?
Thank you for witnessing that.
A practice of authentic, witnessed movement
This may have been the most important thing I heard said (and there were many that continue to affect me) — “Thank you for witnessing that.” In this authentic movement practice, Keke is dancing and speaking what she is dancing, with someone witnessing. During her talk, when Keke said the words, “Thank you for witnessing that.” I shook a little inside as if all the memories archived in me, at a cellular level, were considering the possibility of being seen and what it might mean.
Medical records transformed into poetry
In Excavātion: an archival process, Keke’s practice consisted of requesting and reading through the archive of her medical history (not such a simple things to do) and turning printed pages of it into poetry (as well as movement as in the image above). In the documents of her early history, especially around “her mother’s experience navigating the medical industry”, she was able to see how qualities of her healthcare experience shifted based on the postal code and skin tone of her caregiver, expressing inherent medical racism, and the politicalness of being a brown body in the world.
Blackout poetry is a form that embodies movement and words. What you see on the screens in the images below are projections of Keke’s medical records, much of them blacked out, and the visible words revealing and revaluing lived, and living, experience. Keke used the blackout practice to question who got to have a voice in her medical record…Who is speaking? Who is not speaking?
Keke said we can read it however we want. The captions are my readings. I didn’t transcribe Keke’s when we read them to us. I don’t know whether mine are different.
Collecting soft data
“Soft data is data as human experience — full of opinions, suggestions, interpretations, contradictions and uncertainties”…
Yo-Yo’s Resilience Journal is a physical ritual that she began in January. Her framework of soft data begins with a circle. Each circle is a month; each slice of the circle is a day and has seven dimensions to it, expressed in layers that Yo-Yo colored in with varying intensity to match her day. She also made daily notes on the facing page and incorporated symbols to commemorate certain kinds of moments. In her resilience journal, Yo-Yo is creating an archive of how her illness presents itself, including its overlooked, and sometimes contradictory, aspects.
Instead of coming from a place of needing to be fixed, she tracks what living is like. The seven dimensions of her days that Yo-Yo tracked are:
Logistical (issues led to asking for help)
Future visions (enacting in the present)
Past (trauma, memories brought up)
The symbols are a little hard to see in the image, but if you look carefully, you’ll make out circles, indicating “I accommodated myself” and stars, indicating “People Accommodated”. The other three kinds of repeatable moments being tracked are open triangles, indicating “Someone asked about it”, an “X” indicating “Thought about death” and a filled-in triangle, indicating “Had to explain to someone”.
The monthly visualizations extend attention beyond a catalog of illness, they express healing as a process of continual becoming.
Yo-Yo shares her journal with us from the place of “This illness is not just my own.” The books are available to us, too, to track our own soft data. You can carry a journal with you, wherever you carry your body. I bought a journal and look forward to investigating and tracking…
There was so much that came up for me, as I sat, listening to Yo-Yo and Keke take us through their practices of process-driven art-making out of their personal histories, enlisting multiple media to give expression, visibly, audibly, and through movement, to investigate, record and reshape meaning. I left inspired, intending especially to keep at the project of speaking. I wish you could have been there.
“We can learn to work and speak when we are afraid in the same way we have learned to work and speak when we are tired. For we have been socialized to respect fear more than our own needs for language and definition, and while we wait in silence for that final luxury of fearlessness, the weight of that silence will choke us….it is not difference that immobilizes us, but silence. And there are so many silences to be broken.” 
Yo-Yo had posted on Instagram that she would be there on Sunday, so I came back to Eyebeam to take time viewing the work. Also, I hoped to talk with her. I did get that chance. Here she is with her friend (whose name I wish I had noted down!) her cap glowing.
 Embodied Scores–the poetics of data excavation in the crip body with Yo-Yo Lin and Pelenakeke Brown, taking place at Eyebeam in Bushwick on 12/04/2019, presented by Eyebeam Assembly in partnership with Denniston Hill and The Laundromat Project. For more on the event…
 “The Transformation of Silence into Language and Action”. Paper delivered at the Modern Language Association’s “Lesbian and Literature Panel,” Chicago, Illinois, December 28, 1977. First published in Sinister Wisdom 6 (1978) and The Cancer Journals (Spinsters, Ink, San Francisco, 1980).
It wasn’t quite what she expected. She imagined there would be vagina portraits on the walls. Actually, nearly everyone said the same. I can understand that.
What does an art & conversation experience mean anyway?
There were women who told me that they really liked the table installation format, the intimacy and directness of it.
I like it too.
Still, I know that disorienting feeling of “Wait, where am I? Is this the right place?” — it can be off-putting. Even for way less provocative subject matter than viewing vaginas.
I’ll be providing more info up front going forward.
Meanwhile, I thought I’d just share these photos, so that they’re available when I organize the next art & conversation experience (that happens to be in a similar space, with our words on the walls and vagina portraits laid out on tables for us to turn over and view and arrange however we like), and I can point you here to get a glimpse of what we’re gonna do together. Or at least what it might look like when you enter.
It’s harder than it should be to understand, live through, or get support for even routine bodylife events. Not to mention the confusing, painful and debilitating bodylife events that emerge and take over our lives.
I believe there is way more pain, confusion and shamed silence than we realize.
Hard things become normal. You don’t want to complain. You make do. You work around what you’re feeling. You don’t know who to ask, or where to go for help.
Has this happened to you?
So, medical gaslighting…That’s when you do go for help, you go see a doctor, and not only do you not get the information you need, but you’re treated as if what you know about your experience in your own body is not important, incorrect or a misunderstanding on your part. The doctor’s view and know-how are the authority.
What do you know?
About your experience.
I believe this is way more common than we realize.
I don’t think that doctors necessarily realize what they’re doing in those moments. Still…
To quote the Nov 21, 2019 New York Times article “Thank God for Judy Blume” by Dr. Jen Gunter, “Many women have experienced medical gaslighting — having their symptoms dismissed and being told their lived experience is imagined. Women tell me this makes them feel uniquely broken, as if something is wrong with their body only.”
As if something is wrong with their body only.
I’m collecting stories. It’s confidential. The form I use does not extract or request any information about you. I’ll receive only what you choose to write about yourself and your experience. I think the first step is the opportunity to be heard.
Over what services are available for its care, comfort, safety, self-expression and quality of life.
And what access to services looks like for you.
Whether availability and access are the same for everyone…
What else should we consider?
What do you think?
Who should have authority over our bodies?
Please post your thoughts in the comments. On these this topic, these questions. On anything that this brings up for you. Experiences. Feelings. Questions. Are all welcome here.
Share this post with a friend who would be interested in this conversation.
Tell me about an individual or organization having this conversation.
This conversation is for and about all of us…I’m working on ways to connect us.
And…if you’re in, or near, NYC on Nov 30th, there’s an event for women (self-identified) — a vagina vérité art-&-conversation experience where we will explore these questions, and many others that arise, in a zone of safety and freedom where we can have conversations we don’t usually get to have about our bodylife experiences. “Telling our own stories” takes place from 3-5pm at merge new york. For more info and tickets…