Image of a long, light wood table, set with 18 chairs of black-edged backs of light-colored rattan. The table is set with small rectangular sheets of white paper and a black pen at each chair and 4 x 6 cream-colored watercolor sheets with words and phrases on them. There are a 100 laid out on the table at different angles. Not so many that you can’t still well see the table top, but it’s a lot. This table is set for the first Bodylife Library Lab, held at the Wing club in SoHo, NYC. In the back, a woman is passing by and there is a floor plant and some comfortable dark orange upholstered chairs in the background, with a woman seated in the way back. You can just see her head.

Tell me again, why can’t we talk about body stuff?

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 exactly is more important than that? 

What exists outside of that? For you.

An image from the “Embodied Scores–the poetics of data excavation in the crip body” presentation, where Yo-Yo Lin (left) and Pelenakeke Brown (right) sit on chairs, a small red table with a plant, water and wine between them, facing the audience (a few members can be seen in the front row seated on the floor, here, looking over their right shoulders directly into the camera lens). Above them, behind Yo-Yo and Keke is a screen projecting an excerpt from Audre Lorde’s essay, “The Transformation of Silence into Language and Action”, which reads “ 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.”

Transforming silences

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 [1]. 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”. [1]

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.” [2]

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. 

Embodying the visibility we fear. Including the viewer as part of the practice. The image on the screen is from Excavātion: an archival process.

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.

I saw she returns certain Repeat other side come out moon
She knows her body, extends, unsupported, up”…names “come here” “go away”.

Collecting soft data

“Soft data is data as human experience — full of opinions, suggestions, interpretations, contradictions and uncertainties”…[3]

An excerpt of Yo-Yo Lin’s Resilience Journal, here tracking a month of overlooked aspects of being.

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:

  1. Felt it
  2. Logistical (issues led to asking for help)
  3. Body image
  4. Social pressure
  5. Getting care
  6. Future visions (enacting in the present)
  7. 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.” [2]

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. 

Yo-Yo Lin and a friend, at Eyebeam, standing in front of projected facing pages from the Resilience Journal.

References

[1] 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…

[2] “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).

[3] Yo-Yo Lin: Resilience Journal, 2019.

[4] Penelakeke Brown: Excavātion: an archival process, 2019.

Image of a piece of watercolor paper with “MEDICAL GASLIGHTING” painted on it. Some leftover pencil markings visible, showing letters originally in a different location. Also, a palette drawer that slides into a small watercolor paint set is above the paper. Everything is on a white with gray marble table top.

Medical gaslighting

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.

Sound familiar?

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.

You can share your experiences here. I will hear them with the respect they deserve.

Image of large columns, metal barricades and a security guard in the background, with the caption in the image: WHO SHOULD HAVE AUTHORITY OVER YOUR BODY?

Who should have authority over your body?

Who should have authority over your body?

Over what it looks like.

Over what you can do with it.

And where.

Over what can be done to it.

By whom and for what reason.

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…

I would love to hear what you think. 

What matters to you.

What you need.

For yourself.

For the women and girls in your life.

Woman passing quickly by a now-empty store, with jet stream hair and RISE behind her.

You are not free.

I don’t want to just get through this.

This is an opportunity to step off the inertial way of things, and build the world we actually want to live in.

For me that is a society whose systems, governance and norms support the widest range of bodylives, not just one take on the life of a male-born-and-self-identifying-as-male. This isn’t about men vs women. What I want is a world that is based on the reality of being human, varied, complex —because we all are— and in it together, regardless. Regardless of what you thought or were taught is how it should be. I wish it was easier too. But mostly, I wish it was reality-based, honest, sincerely respectful and kind.

More than half the world lives a different bodylife than the standard-male bodylife on which we base our norms. One in four women have had, and will have, an abortion. This statistic has been around for a while. Abortion is normal. For bodies that can get pregnant, managing the number of pregnancies, the timing and the circumstances of pregnancy are a normal part of their life. If it’s not your body, it’s not your place to decide what, how or when. Ever.

Mid-year status report on freedom

State legislatures across the South, Midwest and the Plains enacted 58 abortion restrictions, 26 of which would ban all, most or some abortions. This surge in abortion bans is a distinct departure from the strategy deployed by abortion opponents for decades, which was to adopt incremental abortion restrictions with the cumulative impact of denying care to patients and forcing clinics to close. This approach had led to passage of laws that were less likely to be challenged in the courts than outright bans.

The much more radical strategy of enacting abortion bans hinges on the hope that these bans will be the subject of court cases that will give the U.S. Supreme Court an opportunity to undermine or overturn long-standing constitutional protections for abortion. However, both strategies have the same goal—making abortion impossible to both provide and obtain.

Elizabeth Nash, Lizamarie Mohammed, Olivia Cappello, Sophia Naide, Zohra Ansari-Thomas, State Policy Trends at Mid-Year 2019: States Race to Ban or Protect Abortion, July 2019.

Maybe you’re like me and you’re just beginning to understand the significance of these maneuvers, or your role here. We cannot let this happen. Safe and unrestricted access to abortion is a human right. It’s a matter of privacy, liberty and equality.

This is about you.

When it comes to personal freedom, we either all have it or we don’t. Everyone has control over their bodylife, or no one does—because it’s not freedom then, it’s the privileged space you were lucky enough to find yourself in within a larger, controlled space. Maybe you’re the controller—for now. Still, then you’re bound by the mandate to dominate and control the others. You just aren’t free. Not if everyone is not free.

Two trees, near their tops, bark and without leaves. A couple of bodies in conversation with each other, being watched by me.

Bodylife

It’s your home, your body, but not merely a container—and it doesn’t really shelter you. It’s your surface. It’s your capacity for touch. I want to second-guess every word (like capacity) because really this is the first time I’ve tried to abstract what-all I’m getting at when I begin to think about bodylife. Not to mention what it feels like to do things with our bodies, through our bodies. Walking, kissing, yoga, running, sweating, anything that makes you sweat.

I haven’t even begun to touch on the things women’s bodies do and experience throughout menstruation-reproduction processes. The range of experiences happening day by day when it comes to your period, pregnancy, birth, post-natal life, post-menstrual life…is varied and personal and flat out awe-inspiring—and shunned out of view, co-opted and controlled by politicians and other non-science-based thinkers. 

Then there’s the violence (one in three women will be beaten, raped or killed) and discrimination based on gender, our non-male bodies. And the objectification, and endless assessments and comparisons, by them, by us.

What we were and weren’t told, the beliefs and assumptions and expectations we formed, regardless of what we wanted. What we did and felt. What was done to us. All this comprises our bodylives.

Each of us holds so much history in our bodies. So many stories. I wonder how it is for men, or anyone who self-identifies their gender in another way. It’s just I’m focused on female bodylife with my work. Trying to get to normal. And to completely undermine it.