Camisha L. Jones talks about embodied poetry
and writing Flare


Please describe your journey toward writing poetry that reflects on the experience of living in the body. Have you always written this way, or did you come to it over time?

My body led me here and it’s definitely taken time.

I think my first body-focused poem was about fibromyalgia. I was diagnosed in 2001. Most of the pain was concentrated in my hands and at the time I had a freelance job writing an organization’s history. I was also working full-time and helping to care for two small children. That first official flare meant walking away from the freelance job, the first I had as a writer. It felt so unfair, that this sense of calling to write was being limited by my own body. On a spiritual level, the pain targeting my hands felt like an attack. It’s been hard to process that emotional pain and it took a long time to write my first poem about it. It was probably around 2007 or so.

Since moving to the DC area in 2013, I’ve experienced the most frequent and intense flares of fibromyalgia and Ménière's Disease that I have in my life. It’s completely changed how I see myself. I used writing to navigate that challenging transition.

Writing "Ode to the Chronically Ill Body" was a turning point. It was not written to share with anyone. It was me giving myself permission to say what seemed wrong to say out loud. Part of why I wrote that poem was this feeling that no one – not even my very supportive spouse Anthony – truly understood what I was going through. I looked “healthy” and “fine” even when I was in excruciating pain, even when my ability to hear was completely gone. I kept pushing my way through, even though I was carrying this sense of terror over what was happening to me.

When I shared "Ode to the Chronically Ill Body" with Anthony for the first time, I could barely speak above a whisper. I began to weep half-way through it. It was the beginning of taking back my sense of power and naming what I was going through for myself despite the sense that I “should” stay silent.

Finding my voice as someone living with hearing loss and chronic pain has helped me press my way through feelings of isolation and connect me to others who have similar experiences as mine. Those connections have shown me that I don’t have to see myself as broken. What’s actually broken is society’s allegiance to ableism. And that awareness fuels my commitment to deepening my understanding of disability issues and breaking the silence around them.


Among others, the poem “Haunted” renders so perfectly the experience of anxiety that springs from having a body with disabilities trying to move within a society built for the able-bodied. How do you think the relationship between anxiety and disability operates, either in your poems or in daily life?

It’s taken a long time to write a poem I felt confident in that addressed the issue of anxiety – likely because of anxiety! For me, anxiety and disability especially overlap in terms of expectations. I tend to be a perfectionist so I have high standards for myself. I have this voice inside – I picture her pulling at her hair, standing on chairs, shouting to make her points – that sees imminent catastrophe and failure at every turn. Disability complicates those fears because, well, some of those concerns that inner voice screams about are very real.

As someone living with disability and chronic pain, I’m just not able to do things like some other people or even like I used to be able to. I have brain fog, vertigo, episodes of pain and hearing loss to contend with. Each of these things can intrude on my life at any time so that feeds my sense of uncertainty about many things: Am I able to drive myself from place A to B? If I want to participate in a poetry slam, will I be able to understand the rules when they are explained to me in a noisy venue? Will I misunderstand a question asked of me and say/do something embarrassing in response? Will I get vertigo just as I’m performing a poem on stage? Will I be able to do anything fast enough in this society devoted to speed and busy-ness? If I accept all the poetry gigs offered to me how much pain will I have to endure afterward? If I don’t accept gigs, will I become irrelevant?

I carry lots of uncertainties within me and the challenge is to cultivate an inner voice with more confidence and boldness than the one that operates out of fear. When I tune in too much to that anxious voice, it immobilizes me or shows up as self sabotage, keeping me from writing, from engaging with others, from believing in my own power.

On the other hand, that inner voice has lots of imagination that can be harnessed into poems. And the challenges my body presents are constantly teaching me the importance of balance and rest, both really good things for managing anxiety.

Flare cover.jpg

Purchase Flare
from Finishing Line Press.


I am extremely drawn to the poems “Acoustics Test” and “Ménière's Flare” because I too am interested in issues of performance and the disabled/unruly body. In “Acoustics Test,” the audiologist is continuously evaluating the speaker, and the speaker feels the compulsion to pass every test. “Say the word ‘mouse-trap’ / Say that the cheese I’ve been chasing is inclusion / Say my life is a sitcom / And I’m scared to be caught acting / With the right lines in the wrong scene.” How does the issue of performance impact you, either in your poems or in daily life? How does being a woman of color add further facets to it?

I think immediately of one of the earliest poems I wrote about Ménière's Disease, “The Sound Barrier.” When I wrote that poem, I was discovering over and over that if I asked someone to repeat themselves more than two times, they generally said “Nevermind” and walked away. I hated that! My curiosity just couldn’t stand it. And it always made me feel like that person walking away felt I wasn’t worth the extra effort. No one likes feeling that way.

There’s a line in “The Sound Barrier” that says: “…I pretend to hear when I don’t./I shake my head ‘yes’ when the answer should be ‘huh!?’” I’ve done this so often that now it’s just instinctual. It’s a habit I want to break but it is also a survival technique. I just don’t always have the emotional energy to handle able-bodied people’s discomfort, lack of patience, or frustration with my inability to understand them.

There is this performance demand to stay silent and not make waves. I’m constantly aware of the fact that if I talk “too much” about my conditions, I might be seen as “whining” or wanting attention. I might not be chosen for a job or seen as capable. People might make assumptions about me that are not true. I won’t be seen as “normal,” like there’s any actual norm that could fit any of us.

So, more often than anyone knows, I push through the pain and episodes of hearing loss without saying a word. I appear able-bodied, even though I am hard of hearing and have chronic pain, and this too, perhaps -- especially in my silence -- is a type of performance I carry.

I find myself constantly contending with the performance demand to keep up with standards of competence that just don’t fit my life. For instance, as a Black woman, I was raised to understand that working twice as hard as White people is how I am to show competence. The idea of “Black excellence” is deeply intertwined with the demand to be on one’s “grind” (i.e. in constant motion in pursuit of one’s goals). These standards leave little room for the work/life balance and self-care my body requires and too often they drive me to overextend myself.

I grew up in Black Baptist churches and there’s something I want to say about that that I believe to be relevant to this topic. In my experience, church folk prefer talking about disability in the context of testimony, something you overcome through prayer and belief.  I am supposed to “speak life” over my circumstances. I’m supposed to believe I am healed, right now in Jesus name. I’ve begun to see this also as a performance demand. And it isn’t that I don’t believe in the power of supernatural healing. It’s that I know my life is a miracle right now and my God is with me right now sustaining me through it all. It’s that I know what’s needed healing most in me is the very idea that I am broken.



Say the word “pan-cake”
Say the word “birth-day”
Say the word, “base-ball”

This is a test

It’s me up at bat
An audiologist on the mound
Pitching words to me slow
So I can catch them

This is a test
Random as “it” may be
With no cause or cure, I am here
Because of what I can’t hear

Say the word, “play-ground”
As far as Ménière's Disease is concerned
I am all swings and sliding boards|
Stuck on the merry-go-round of vertigo, hearing loss, ear noise

Say the word “door-knob”
I am as deaf as one most days
Entering conversations only to be lost in them
My hearing never turns or unlocks completely

Say the word “dead-bolt”
The faculty or sense by which sound is perceived
I perceive sound as code I can’t always break

Say the word “jail-house”
I got no way to escape these ringing ears
The clanging against the bars
Dividing me from comprehension, from community

I say the word “side-walk”
Watch the wet pavement of hearing loss
Swallowing the weight of my aspirations
Then I say the word “mail-man”
Wait for these tests to deliver
Something worth repeating
            A life-boat
            An air-plane
To save me from all this set-back

Say the word, “mouse-trap”
Say that the cheese I keep chasing is inclusion
Say my life is a sitcom
And I’m scared to be caught acting
With the right lines in the wrong scene

What will critics say about me then

Will they say the word “use-less”
Or “bro-ken” or “mis-fit”

And I know these aren’t nouns
But Ménière's has a way
Of stripping the noun out of “hu-man”
Reducing me          to lesser adjectives
Reducing me          to echo


Please share with our readers a list of 5-10 books you think we should read right now.

I’d like to use this as an opportunity to shine a spotlight on some recent books by my Split This Rock colleagues:

1. Killing Summer by Split This Rock Executive Director Sarah Browning

2. The Body Is Not an Apology: The Power of Radical Self-Love by Split This Rock Board Member Sonya Renee Taylor

3. Don’t Call Us Dead by Split This Rock Board Member Danez Smith

4. Beast Girl & Other Origin Myths and The Poet X (forthcoming in 2018) by Elizabeth Acevedo, Former Coach for Split This Rock’s DC Youth Slam Team

5. The January Children by Safia Elhillo, Former Teaching Artist for Split This Rock Youth Writers’ Guild

6. Death by Sex Machine by Franny Choi, Member of Split This Rock’s Festival Curatorial Committee

7. Counting Descent by Clint Smith, Member of Split This Rock’s Festival Curatorial Committee

8. Haint by Teri Cross Davis, Member of Split This Rock’s Festival Curatorial Committee and Advisory Committee

9. Incendiary Art (or one of my personal favorites Teahouse of the Almighty) by Patricia Smith, Member of Split This Rock Advisory Committee

10. The Scientific Method by Kim Roberts, Member of Split This Rock’s Advisory Committee


Some Rogue Agent fans are just beginning to explore what making art about the body would look like for them. What advice would you give to someone just starting down the path toward writing poetry that features the body?

Be honest. Follow the strongest emotions you’re feeling and see what lies beneath them. When fear shows up, be honest. Listen to what the body has to say. It has its own voice, its own motives and desires. Let it say what it needs to say through you. Don’t think about anyone who might read the poem. Release yourself from thinking about anything but you and the page. Give yourself room to just get it out. Decide later what to do with it and if you want to share it. Read other authors that write about the body. Read poems that surprise you enough to gasp out loud. Let those poems be inspiration but not a standard for who you have to be as a writer. Find your own path.

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Camisha L. Jones is author of the poetry chapbook Flare (Finishing Line Press, 2017) and a recipient of a 2017 Spoken Word Immersion Fellowship from The Loft Literary Center. Through both, she breaks silence around issues of invisible disability as someone living with hearing loss and chronic pain. Her poems can be found at Button Poetry, The Deaf Poets Society, Beltway Poetry Quarterly, Typo, Rogue Agent, pluck!, Unfolding the Soul of Black Deaf Expressions, and The Quarry, Split This Rock’s social justice poetry database. She is also published in Let’s Get Real: What People of Color Can’t Say and Whites Won’t Ask about Racism (StirFry Seminars & Consulting, Inc., 2011), Class Lives: Stories from Across Our Economic Divide (ILR Press, 2014), and The Day Tajon Got Shot (Shout Mouse Press, 2017). She is Managing Director at Split This Rock, a national non-profit in DC that cultivates, teaches, and celebrates poetry that bears witness to injustice and provokes social change. Find her on Facebook as Poet Camisha Jones, on Twitter as 1Camisha, on Instagram as 1camisha, and online at her blog.


(Photo by Naji R Copeland, Sr.)