To Hold the Grief & the Growth¹: On Crip Ecologies

Nondisabled people have no concept of how expensive it is to be disabled.
—Imani Barbarin

I use the word Disabled. Disabled disabled disabled. How do you feel when you read that? It’s an open word, a word in flux depending on who holds it and self-identifies. It is a term mired with stigma, especially for Black and brown people. It’s weaponized to shrink credibility and desirability. Disabled people are less than in a world where disabled people, especially Black and brown people, are told to just be so grateful that normies/ableds let us live, let us even be on stage, let us be in the anthology or retreat, let us be included. It would be ridiculous to talk about crip ecologies without grounding the subject in disability justice. Disability justice means we innovate crip ecologies, diverge from those perilous confines, and center collective care and care work (both terms embedded in disabled community—specifically Black, Indigenous, and people of color communities), with queer, non-binary, and transgender communities at the helm. Being disabled is culture, community, adjective, and is a richly stunning, difficult, and lavish language that many people water down or oversimplify as one person’s obstacle to heal from or fix.

I also notice that when disabled writers and artists are spotlighted, abled perceptions are hungry for trauma or inspiration. The mainstream american public wants to absorb retellings of shocking injuries and how brave disabled people are for facing hurdles. We become caricatures, tokens, liabilities, and warning signs for so many in the normie community. Disabled poets, writers, and artists cannot simply exist. Our catastrophe must be on display for consumption, and at the same time very little accountability is discussed around the ableism that causes obstacles for disabled people in the first place. No, we are to ultimately be the epic hero and poem, a solo endeavor of plight and woe. These expectations are impossible to fulfill and operate to erase systemic dynamics that plague not just the disabled artists and writers but the ways in which we define poetry. No, in order to be understood as writers we must prop up our pain specifically and we are expected to disclose how gruesome or impossible it is to be disabled. The casual hatred for disabled and sick people in the world doesn’t just turn off when we discuss poetry.

From residencies to fellowships, to even speaking engagements where I am guest faculty at a university, any of the following things have occurred:

• A total stranger touches my assistive devices.
• Someone will not have any adequate accessibility for myself and/or the audience.
• I am the only disabled and sick person invited to feature. (There can be only one! *evil cackles*!) Can you say tokenism?
• A stranger will trauma-dump their own perceived numerous internalized toxic and ableist complaints (Nobody knows I am sick but let me list everything I have been through and I should really get better soon), their fear of being disabled, the shame of being disabled, etc.
• I’ll be spoken to like I am a lil’, precious, porcelain doll baby.
• People will ask me severely intimate or personal questions about my body.
• People are surprised I am a feature, speaker, or expert. Ah, infantilism!

These pursuits are additional hurdles in arts, literary, and poetry communities and highlight how embedded ableism is in arts spaces. If you ask me how my writing is going, know that at any given point before we can even discuss technical concerns, methodology of writing or craft, I am likely being harangued with any combination of the situations above. What I’m interested in is how sometimes poetics aren’t the stanzas written or said aloud. In fact, it’s sometimes how we find connection within our friend circles and extended networks, how we elaborate on care to even get to the poem in the first place. How many times have sick, Disabled, neurodiverse artists and poets had to navigate inaccessibility at our own events—Maybe if we find a busted ramp, can people go up the door? Anybody know any ASL interpreters on the fly? If we go to this event, will it be too scented, too loud? Can somebody link the event virtually?—until we figured out a way to make poetry happen where we all can be present. This rigorous and inventive reality is what makes for some of the most beautiful poetics.

In conversation with another disabled and transgender poet, Jimena Lucero, the concepts of productivity in poetry and literary milieus inevitably came up. We concurred that being disabled and sick means being malleable, means entering forces of the body and the mind, and being interconnected to climate, the land, or wherever we are. It means that we may not be able to create a conventional schedule for writing because we’re at the waiting room advocating to see a specialist, arguing with pharmacies who’ve lost our med scripts, calling friends to see if they have spare medication, assistive devices, a therapist they recommend, could you call the museum, the theatre to see if they have wheelchairs or an elevator? The natural world in this case is inexorably precarious. People like me are called to reimagine and improvise in a climate that deploys violence against us and our ability to write anything down. What is more poetic than that? The ultimate free verse poem.

Frequently, systemic obstacles severely impact housing, medical care, employment, and safety. Where are the poems in that? Writing from a crip ecology immediately addresses how status quo patterns of meritocracy, exceptionalism, and mainstream are, in the lightest, just plain boring. In the most heinous terms, these dynamisms are dangerously unrealistic on purpose, especially for those of us who cannot be perceived as abled or perform painlessness. Disabled, sick, neurodiverse, Deaf, and mad life means you have to write your own reality, means you make it up as you go; you and your loved ones improvise and advocate. This finesse is an ingenuity when your own demise is constantly perpetuated in writing and the art world. I think—as somebody who was born physically able bodied then transitioned as a young adult—as somebody physically disabled, I really had to learn about cripness or kripness, crip ecology, and disability justice from its original founders in the US context, which would be essentially Sins Invalid. Patricia Berne, Leroy Moore, and hybrid works such as Eli Clare’s Brilliant Imperfections: Grappling with Cure were something that were all absolutely important to me and how I could possibly configure being a disabled writer. What an illumination it was to find poetry that reflected working class, poor, Black and brown, and queer livelihoods.

I think that it’s not just about connecting to my own body and my own self, it’s beyond me as a singular person and spirit. One of the first principles of disability justice, as Patricia Berne evokes, is intersectionality. Intersectionality and interdependence is that fusion of where you are with birth, with climate, with your community. For me as a person of color, as a Filipinx person, I cannot help but consider how migration stories link to place, to poetics, to who gets to take up space in the natural world, in the imaginary world, to how future is created. This level of discernment embodies cripness and spoonieness and expands us to think about something beyond what is in front of us. Disabled and sick people in the US are told that they are a burden, a pity, that limitations are weakness, that often they should be hidden or banished away. To survive knowing these attacks means imagination isn’t just a human function of a writer alone but an outright strategy of survival, a shared experience of continually working to make us whole, fed, housed, desired, loved, and affirmed. Sick and disabled people across a vast range of those identities are thrown into dynamics where not only do buildings push us out, but our own family members, police states, carcerality, and gender binaries wreak havoc, and all on top of white supremacy.

Crip ecologies, crip time, crip ingenuity, crip spirit radically aim to question root systems that keep our imaginations limited and starved. How can we channel joy within our own skins before there is the stethoscope, the specialist’s jackhammered interrogation, before all the stigma we battle? I am not asking to look beyond it, because these constraints in our beings are here and ever-present. I am asking, as poets, as curious people who want liberation, how do we revel in the grief and also the growth we experience? In what ways does this unpack how we are taught to perceive place and nature?

I think of families who were forced to migrate to the US empire and how we and the generations after celebrate ancestral navigations. Disabled and sick, mad, neurodiverse, Deaf, and Blind people have been in every fabric of society. How do we get back to them when their glory and struggles have not just been unmentioned, but suppressed? My mother was chronically sick and my family members were an oceanic community. The ritual of tide, sea breeze, and ocean salt were part of their daily soundtrack. It must’ve felt jarring for their entire climate awareness to be forced into the flat and waveless and saltless lakes of the Midwest. Crip ecologies asks us what happens in these jarring moments: How do we, in these harsh pivots, persevere? How do we flail and hold our grief in our marrow? As a poet, I have to inquire, where does the grief and longing go and how do we store it? As a former organizer I can’t help but consider: What are our urgent needs and what gaps are we facing that get in the way of those needs? These moments of dislocation have incredible effects on our bodies, our hearts, the full scale of how we believe our personhood. Crip ecologies is the way in which I try to find liberation in all parts of my whole self and in my writing. In the “10 Principles of Disability Justice,” Sins Invalid and Patricia Berne define Recognizing Wholeness as this: “People have inherent worth outside of commodity relations and capitalist notions of productivity. Each person is full of history and life experience.”

Wholeness encompasses how we face multiple scenarios and navigations all at once. Wholeness is about how I try to pivot my privilege in all its avenues: in the way I breathe, have connections with my friends, whether that feels like showing up for folks by sharing food stamps or creating deeper access intimacy with someone, being mindful of how much I can physically or mentally carry, or accessing forests and woods when others can’t. Wholeness is realizing my oddest access and being engaged in a moving natural landscape and describing that to my peers. Many of my loved ones cannot get to a beach or adventure to nature, whether it’s stairs, no ramp, or financial obstacles. If my friends and I who are city dwelling are balancing making rent and medical care, we aren’t afforded the frivolity to access quiet, uninterrupted writing time in the trees. Moreover, our embodiments aren’t in consideration. Our access is denied. What happens when you are a writer who:

     A) Doesn’t have a trust fund?
     B) Doesn’t have a cis or rich partner to fund your career?
     C) Doesn’t have a blood family to fund your basic costs as you write?

Here’s an honest question: How does the writing happen when you juggle numerous formulas to be sustainable? My first book, When the Chant Comes, was written in bed for easily 65% of it, with ice packs on my feet, sutures and stitches jutting out of hospital socks, swarming pain, and dizzy medication delirium. There is room for a rubric of writing that engages the dreamy, the dizzy, the crazy, the pained. The writing has been there, however it is a matter of gatekeeping the page as much as it is a matter of gatekeeping the land, access to nature, access to breathe clean, fresh air. I believe there’s a constant struggle of breathing in colonization, anti-Blackness, and white supremacy. On the other hand, the devouring, the incessant pivoting, and constantly holding that onslaught are built into the words before we can even open up a Word doc. All the while, how do we go back to our roots, whatever they may be, which do not belong in all that violence but have been impacted by the brunt of it? Conversely, a disciplined, quintessentially abled writer is supposed to constantly be writing, achieve multiple submissions and publications, be able to write a new book often—what, every two to four years?

I cannot discuss just the maroon autumnal leaves of a forest in a poem. You see, for every invitation of publication, every event, in-person and virtual, every residency in the middle of oak trees, there’s a script I have to bring along with me. I am, by default, an unpaid teacher, training: Yes, Disabled and Sick people exist, do in fact care about poetry, but they can’t access the flyer without a description, can’t get to the building because of all the stairs, can’t witness the poetry because there are no ASL interpreters or captions. For those like me, our jobs are not to just think of the methodology and technical frameworks of poetry, but in the immediate: How can we be at the reading showcasing qualitative work when it is inaccessible to us? Yet, to dream outside of systemic limitations in which I find myself is not a courageous effort but a necessary one. It’s a laborious evolution to actualize something beyond man-made oppressive structures imposed on art and art making. If we made more of our poetry and art spaces accessible, if we invested in caring for the poet more than their output or productivity, how would it change people’s experiences of poetry and of nature? How would people’s fear of becoming disabled shift if instead disabled was understood as a way of being and becoming, an opportunity for illumination?

True story: I once attended a respected writing retreat where I shared all my access needs well in advance and although I was informed things were accessible, when I arrived it was a nightmare. The beds were deflated air mattresses packed liked sardines, where your backside definitely hit the floor, which was also the writing workshop area. People like me who needed quiet were placed in “The Gentle Room” which was not gentle whatsoever. It actually meant the sick were not checked on, it was not scent free, meal times were being altered without notice (uh oh for diabetics!), the bathrooms even got flooded, and yes, we lost Wi-Fi.—Insert educational opportunity—A Lesson: Dear writers and artists, I implore you, always always ask for descriptions, photographs, and video of venue/location before going anywhere! If there aren’t descriptions or photos on the website, that’s a red flag. Access site visits are great! Do not trust community because accessibility isn’t always a priority even when there’s a thoughtful mission statement. To say the cabin was over legal capacity is a fact. There we were fending for ourselves, finding spoonie (or just exhausted) solutions in a mired place where I was told before my forced departure (yes, you read correctly, I left early), “I’m sorry you could not handle it here. It’s not made for everybody.” This was code for: you couldn’t rough it. You weren’t good enough or dedicated enough to write in this problematic environment. You couldn’t compromise your own access and boundaries. An old tale, the onus is on one person for not making it work, not the climate. These are the places where I am supposed to prioritize my writing? I am in too much pain, too old, and this lifetime is too short.

The earth does not belong in the place of violence it is located in now. That is industrial and man-made. Climate justice poetics actualizes how words can imagine a deeper futurity not just for ourselves as a human race, but the planet at large. In trying to navigate what is being forced and imposed on me and my communities—be it anti-Blackness, US state carcerality and prison—how do I undo those things, as Eli Clare suggests, in my bodymind as we spoonies call it? My mind, body, and spirit are inherently connected. Why are we informed that our feelings are separate from our physical forms? How many times are poets, especially those in multiple identities and struggles, asked to compartmentalize? How do I challenge that and constantly reexamine myself? Back to what home feels like? What safety feels like? And how does that elaborate in collective cultural poetry? If we are committed to poetry, we are to own that poetry is often constructed and positioned to prioritize ableism and competition. Let’s not all assume everybody can just publish a book because we know the literary and poetry formal world is incredibly hierarchical. There are logistical hoops constructed in place just like with imposed access to nature, where what’s poetic and what is natural are determined by gatekeepers.

Frankly, I want to be and to breathe more than I want the books. I don’t think that publishing institutions can save me, or hold my loved one’s nuances and expertise to the fullest. In fact, they have proven that exceptionalism reigns supreme without challenging how the confines of this standard have even come into place and are maintained. How many of us who write—those without upper-class income, generational wealth, whiteness, and/or perception of abled life—could possibly reach “exceptional” when we are also getting kicked out by slumlords, being misgendered by health professionals, advocating to possible employers for adequate pay and safe work environments, surveilled and policed? Another question: What happens to the rest of us when the myth of productivity and exceptionalism swallow us whole or, worse even, dispose of us?

If we were to consider literary nonfiction, conversation as echoed with several women of color and QTPOC writers, such as the incredible Lisa Factora-Borchers, have pointed out that there is a perceptible fissure in what’s deemed literary and what is cultural, as though there is an unbreachable gaping canyon between the two. Black, Indigenous, women of color, and frequently LGBTQ writing are not taught as “literary” until much later, until the writers are long dead and we commemorate them on their birthdays at panels and galas and toast in their honor at prestigious parties. Whose 
surroundings are perceived as natural? What surroundings are held as monuments and lauded in awards? I do not think poetry is much different in this regard. Sick and disabled BIPOC in this authenticity of writing and reality maybe don’t fit in the conventional box of “literary” because they demand more. Not out of want but out of sheer existence, the need to survive and be valued, the urge to be beyond what is considered the usual is not good enough. Let’s harness some meme language and be like, Yeah a book is beautiful but have you ever had liberation? Access intimacy?

The published world is vibrant and so many of my spoonie kindreds want social change to swim with the words published in ink. So many want to be reflected in the stanzas. I wasn’t the first transgender, person of color, disabled person to write poetry, there were probably hundreds and hundreds of ancestors and people before me. I realized that there was privilege leading to every page I had been honored to publish. Crip ecologies is an attempt for us to constantly scrape into that network, fuel that network, and to nourish ourselves where we have been deemed invisible.

the speed of it is a lie

YOU are SO Brave. (Time: 5:45 min)

& those scars i had hidden wit smiles & good fuckin
lay open
& i dont know i dont know any more tricks
i am really colored & really sad sometimes & you hurt me
—Ntozake Shange

What happened? Aw, sweetie, here, let me get that for you. What do you mean “No thank you.” You don’t want my help? Some people are ungrateful, I was helping YOU. You are SO brave! Please step on the scale, Please step on the scale, Please step off the scale. You are SO brave! I’ve never seen someone on a dance floor/protest move like that! What a pimp!      Can I touch your cane?                Does it hurt?      “People with disabilities are often seen as ‘flawed’ beings whose hope of normalcy rests in becoming more like non-disabled people or on becoming ‘cured.’” —Sins Invalid. (When will you get better?)      Don’t worry everything will be normal soon. If you just try hard enough, you will heal. If you just pray hard enough you will heal. (Have you tried acupuncture? water therapy? meditation?)      If you take these herbs enough, you can be like you were—            better, normal.       Why    are    you    walking    so    slow?
This is the city of the hustle, son. Buck up. If you can’t speed up, leave.
Dear                    ; I understand that you have accessibility needs and we as a queer progressive organization love (love love love mmmlove) your work but unfortunately, we find your requests to be unrealistic. We understand that you are a queer and transgender and person of color and with limited income, but we cannot fund you at this time. Please do send us samples of your work so that we may distribute them to our participants                FOR FREEEEEEEEEE!                Dear [insert assigned-at-birth name you no longer identify with that makes you want to cut yourself at every syllable]: It has come to our attention that you are 100% disabled. You cannot work at all. Disabled people don’t work at all. They should never work. Don’t even consider working.      (Does it hurt still?)      Classification: No prolonged standing, walking, steel pin impacted osteotomy akin mcbride. Constant deviance in the foot based on affected use. Constant deviance. Constant deviance. Constant deviance. Cane usage to support impediment and prolonged limp.                Oh    my!    Look ... at that hair!    Don’t       you have    a boyfriend to come to physical therapy with you? 
“Seen as ‘flawed’ beings whose hope of normalcy rests in becoming more like non-disabled people or by becoming ‘cured.’”                “For the report we’re going to need to see some ID, [insert loud guffaw here] that cannot possibly be you. You were attractive once! What happened? Please step on the scale.                So, you were attacked? Whatdidyoudotomotivatetheattack? What exactly does L G B T Q mean? Well, Ma’am, we have to use the biological sex it says on the paperwork. It’d be nice if you wore some lipstick, maybe some makeup? It might make this whole process easier.                Does it hurt still? Hasn’t it been years now? Why aren’t you better? Based on your old life, don’t you want to be more like me?               Heeeeeeey! Do you have a fundraiser? I don’t know any Disabled people personally, but we can raise funds to help YOU, because we think YOU deserve it. This is the city of the hustle, son. Buck up.

              YOU. DON’T. KNOW WHAT YOU ARE DOING!
Give me that, you don’t know how to take care of yourself!   Ugh,   you   are   so   slow. It’s hard to imagine you could do anything yourself at all.   You.  are   so   pathetic! (Does it hurt? Still?)

Yo homey, we’re all going to the club! Should be some cuties there. Oh, yeah ...  yeah,
there are stairs dude. Oh yeah, sorry dude, I forgot.               The march is 2.5 miles long, maybe you can meet us at the rally?               Aw, look at that little boy with the cane! Why do I have to get up?!#^@               You want my seat faggot?!   So ... (long exhales) you were attacked? Why do I have to get up, chink?               Hey! I’m talking to you! Do you uh-speak uh-tha-engrrriish? He doesn’t even look disabled.    If you have any concerns around safety at this event/conference/protest, you should really bring up these concerns with this cisgender rad skinny able-bodied person who confuses wellness work for everybody gets better work!       Wait (laughs) is that supposed to be a girl?       Awwww, you look so cute when you dance! Let me take a picture of you holding your back—show the cane! SHOWWW THE CAAANE! What did you do for someone to attack you? You must’ve done something to provoke it. Please step off the scale. You know if you lose weight, you’d be healed right?   We’ll help you because we think you deserve it, (not like some people with disabilities,) the ones who drool and make a fuss.
Constant deviance.               Constance deviance.               Constant deviance.
(You’ll be normal soon, won’t you? Won’t you?) It’s not far, just a few blocks. Aw, I know you’re in pain, but you can make it, dude. What do you mean “No thank you?”               you don’t want my help?!
Please step on the scale,       Please step on the scale,       Please step off the scale.

In my poem, “YOU are SO Brave,” there’s this line: “if you can’t speed up, leave.” This line opens up an urgency and the desire for speed, productivity in essence, which ultimately contributes to ableism. People who write poetry know about this speed firsthand. The deadlines, the need to have clout in everything you do, and “with the advent of social media” the impetus to be faster not just in publication but in being a soundboard for the latest news and happenings impacting our humanity is inhumane. This force upends us in grounding not only to poetry but epitomizes the ableism that destroys us when we value labor and production over human connection, connection to the land, connection to our climates. You work and push and then you equal Good. Versus resting or not having the privilege to write all the time then being perceived as Bad. We can notice this in deplorable constructs of Good Migrant vs. Bad Migrant which intuit class, light skin tone, and wealth accomplishment as primary indicators of who is believed as “hard working” and deserving of merit, deserving of staying in this country. Who is even worthy? It is evidently clear that binaries demolish our imagination and the way we poeticize isn’t immune to that.

I began in poetry, not in the literary world, but I grew up essentially as an organizer, in Chicago poetry slam settings, and separately working with women of color and migrants of color youth organizations. Poetry was always there and never left the meeting. There’s this thing that white supremacy does, how it demands labor, from Black people, Indigenous people, and people of color. Quickly, I learned that the more you produce, the faster you are, the more urgent you are, that equals this kind of moral high ground, right? Some call it merit. Which is only part of the conversation. From that model, you’re a better artist, a better worker, and just better, that is your worth. So if you work hard enough, you pull yourself up by the bootstraps, and then you can become this falsity of what a real citizen is, or a real American. This realness embedded in constant assessment of achievement, of exceptionalism. All of this jargon leads right back to the use of eugenics and who is exceptional enough to dwell in capitalist terms. Is it abled people that decide that? Academic institutions? Publishers? White people? How many ways can I tell you the bootstraps are choking us and pushing the very best, beautiful, and creative disabled and sick imaginations away?

My ancestors, my parents, both poor working class, both sick and disabled, worked to the bone, and didn’t reap any of the benefits that capitalism promised. I think that is the pain and obliteration that happens to many people, not just disabled people. It is commonplace for queer, trans and non-binary people, and it particularly targets Black people, right? This forced momentum, this falsity of success, this productivity-as-worth, that’s what gains notoriety and larger—that’s what’s supposed to publish poems and sell books. My communities know that the individualistic drive per 
capitalism is not only insufficient, but an outright lie. Consider the media by The Nap Ministry, for example, which is a Black woman-run organization that discusses the power of naps and the idea that Black people, Indigenous people, and people of color are not allowed rest. That disavowing of rest was directly sourced by white supremacy. What occurs when we’re multi-
marginalized, multiply-disabled, and we’re not given the frivolity, let’s say for me, to be in nature, because we’re trying to just get safe housing. We’re trying not to get policed. We’re trying not to get jumped or harassed in broad daylight in any given city, town, and village.

My crip ecology is directly connected to pace and place. If nature has been withheld from Black, Indigenous, and people of color systemically by people in charge of parks and recreation, if we deny the Indigenous land practices of sustainability, if the conception of interacting with nature is primarily depicted and explicitly dictated by an abled white person or someone who can walk, see, hear, then those avenues are closures to access. If migrant communities can only access land by working fields that they don’t own and harvest to feed people of the most elite, in what ways does this speak to how we construct physical land and an actual physical poem? I like the idea of having space, especially since I am housing-precarious right now. I was not able to live in a safe place even during my feature at Poetry Foundation for “Crip Ecologies” event, where the crux of this essay originated. Trans people and disabled people are thwarted into multiple modes of inaccessibility, particularly with housing and medical care. To have the privilege to slow down, to excavate, and to just be creative—there’s a hierarchy on who gets to have those things. Those enjoyments are not a given but actually highly curated, exclusively for the most rich, the whitest, the most cis, the skinniest, and the most-abled and Christian, and so people telling us to hustle and speed up, that’s coming from ableism. So much of poetic and content creation is activated by trauma responses imposed on communities in struggle. Those are exact weapons to demolish us. Versus if we were to imagine beyond, we could connect ourselves to our ancestral roots, and really listen, and really give our care in the ways that we are able, what a beauty and what a bounty that would be.

tools of survival

The day will come when crip world will be the only world that survived. Crips will do anything to survive and that’s what they want to deny when they kill us ... our will to live is greater than your ability to get rid of us.
—Maria R. Palacios, Sins Invalid, “We Love Like Barnacles”

My survival means care planning and incessant care work. Currently I’m trying to access my dog who is my emotional support companion, and no joke without them I would not be here. On my survival, what works for me is going to therapy, that’s really important. Shout-outs to Darlene from Anti-Violence Project and my queer-ass therapist, Jim. I value checking in with my care circle, and having a close knit of three or four people, as well as a pod, to connect on what we’re actually tangibly facing so that we can problem solve together. What I notice especially during the times of COVID are mutual aid from disabled folks: skill sharing, food sharing, food delivery for the most part, especially that first eight to nine months I really didn’t leave my house. I was completely unable to. Instead myself and a small circle of sick and disabled BIPOC queer and trans people were helping draft our medical documents as highly immunocompromised people. We were hurriedly organizing our advance directives, powers of attorney, wills, protesting triage protocols, memorizing scripts for advocacy for ventilators in case any of us were to have COVID and the medical complex as we know it wouldn’t honor us enough to let us live. These gestures are themselves poems, yes?

I have memorized how to repeat my symptoms, how to calmly stage scripts of diligence to receive care. I created a packet with the photo of me with my partner and friends being held and loved, our starry smiles behind plastic folders, as though we’re all saying, Look at us, how we shine, we live live live. Our shimmer is undeniable even in apocalypse. This packet is at the ready so I can be seen as human enough as a trans brown disabled person. The skills are transferrable you see? Here: memorize a poem, go on stage, hold the trauma just enough to be witnessed. Here: write a letter about why you deserve to be in this residency, your artistic statement, give enough ache to be an investment but don’t uncover so much of the painstaking reality to be off-putting. Don’t say, I just want to be in the trees. I am taxed by the sirens at all hours of night, I wake up crying about my dead mom, lover, friend, comrade, who the medical complex failed. There is a harbor of grief and if you can place me in a cabin where I can just see the river, I will connect to the river and to my ancestors. Don’t say any of that. This is how you become deserving of the residency, fellowship, grant: Dear panelists, I am a disabled trans person sleeping on a park bench, here is my sestina. There, I found the poetry. There’s poetry in the pleading. The cadence in the line is the series of prescriptions I list to my doctors. The rhythm is all the ways in my bodymind we send money back and forth, a sing song of the same $15 for boba to my sick sibling.

We have learned through environmental racism, corporate destruction, and ableism that throughout climate crisis (floods, hurricanes, and storms) sick and disabled people are deemed by the government and larger society as disposable. To discuss how sick and disabled bodies connect to nature is to talk about the magic we inhabit, uplifting ecosystems which regenerate in a complex network. In doing so, it also means we have to account for how this relationship is undermined by emergency and friction, the intersection of climate crisis and ableism. We cannot ignore how disabled and sick people are quickly abandoned by those in power. So when I am just trying to stay here, stay alive, sometimes there are no concrete poems from this effort. In March 2020 the stakes became so high that much of my writing was care planning and preparation to defend and advocate for the lives of my loved ones. When the initial urgency of covid-19 began, a panic arose in public that was unprecedented. I saw friends canceling flights to the AWP conference in San Antonio, Texas. Here it was, a time where sick and disabled communities, particularly people with environmental illness, asthma, and other autoimmune conditions like myself, who for so long have been maneuvering unsafe air, had to be innovative and share strategies to travel safely, to be in community when the air itself was treacherous. We were not new to this chaos. We have had to swim in it. In the next few months, considerations for remote performances and readings became available not for disabled and sick people (who’ve been told for years it was a burden to work remotely with captions), but for the abled people who didn’t want to miss out or to try to maintain the motif of business-as-usual. It’s clear to me now that access needs in the literary world are only upheld when non-disabled people want them.

To survive in this climate calls for something like going back to not just self-worth but collective care. I cannot meditate to babbling brook sounds or kale smoothie my way into solutions to cope with racism, ableism, misogyny, and cissexism. Instead, I imagine and dream a place and time where all bodies can enhance their writing, drift away in a cabin somewhere quiet and with no city interruptions, just to be their fullest selves and write ... or not. In the meantime, I do rituals to connect with my ancestors, spend time with my partner singing hilarious made-up songs in our sunlit and monstera-filled home. I work (and those who love me work) to ensure I can get the privilege to have all my basic needs met. That’s key. In its most basic form that’s food, sleep, and housing. Once those are met, it allows room for poetic exploration and generative creativity with the earth that isn’t conflated with safety planning. It’s the very grounding basic human necessities these days that remind me of my humility and my humanity. And lastly, I would have to say I’ve been making these hella cute mocktails with a really cute mint-basil-kefir-lime elixir that my friend, another spoonie QPOC artist, Keiko, got me. A+++, highly recommend.

Survival means just reading the works of sick, depressed, mad, neurodiverse, Deaf, Blind, Black, Indigenous, people of color, and queer disabled people. It means to prioritize the non-normative. I would highly recommend watching the play We Love Like Barnacles by Sins Invalid for a deeper analysis and artistic expansion of climate change, disability, and cultural work (which includes poetry). I’d recommend reading Cyrée Jarelle Johnson’s poetry. Additionally, read Eli Clare’s work for more trans disabled perspectives. I think those outlooks have buoyed me and helped remind me that the interconnectedness of poetics exists and thrives. As I discover more disabled and sick artistic brilliance, it becomes necessary that poetry and writing landscapes move beyond simple access and commit to tangibly changing norms. A sheer and formidable dedication to undoing ableism is an integral part of every area that poetry and writing inhabits. If we don’t invest in collective responsibility for this work, we are denying ourselves collective pleasure, denying a new stratosphere of nature and how we connect to the elements. The brilliance, lineage, cultures, and skills are here, they have never left, they are undoubtedly found in the interdependence of trees and plants that need soil, sunrays, and water, all in concert. Together with this brilliance we can move poetry back to honoring the land, back to a shared practice where every aspect of nature is whole, vital, worth writing, and even better, worth living.

^{1Grief and the growth is a term used by Bilen Berhanu and Kay Ulanday Barrett during a panel discussion at the 2021 Sick Concert, an event for newly sick, disabled, and spoonie communities, including people with long-haul COVID-19 and more.}