In Lilies on the Deathbed of Étaín, released this month by Beir Bua Press, Irish poet Oisín Breen builds on his background in experimental poetry to craft a collection that effectively juxtaposes the rhythm of language with its descriptive power.
The collection opens with its title poem, immediately engaging the reader with artful contrasts between vivid, traditionally poetic imagery and more conversational interjections. Having never read Breen’s work previously, I found that this opening poem commanded attention and respect—while also serving as an invitation into the rest of the collection.
The six sections of “Lilies on the Deathbed of Étaín” present starkly different poetic and narrative styles, with threads of repetition woven throughout the piece. The poem’s sections integrate elements of Irish mythology with frank, bracing, and often unexpected imagery. Breen’s choices of form and stanza structure complement his use of language to propel the poem forward, with driving momentum at some moments and with a slowing lilt at others. As a whole, the poem not only conveys a narrative from complex and varying perspectives, but it exists as an experimental exploration of the existential ideas at its core.
The pieces that follow “Lilies on the Deathbed of Étaín” address poetry as song and rhythm—which finds clear, palpable expression throughout the collection—while building on the sense of philosophical exploration first introduced in the title poem. In seven parts, “The Love Song of Anna Rua” accentuates Breen’s poetic voice through experimental uses of form that guide the reader’s attention and give visual emphasis to the words on the page. The book’s structure reflects a sense of progression and quiet momentum from piece to piece, demonstrating a thoughtful organization of not only the poems themselves but the collection as a whole.
Throughout the collection, Breen varies his use of poetic devices and phrasing yet maintains an engaging, unwavering authorial voice that guides readers through the often unpredictable and surprising scenes of his work. This collection is one that readers could open to any page and find something to contemplate, decipher, or imagine.
As a whole, the collection showcases Breen’s attentiveness to the musicality of language in conjunction with its narrative power. While this awareness is reflected throughout all of the poems in Lilies on the Deathbed of Étaín, it finds expression in more unexpected and almost percussive phrases in the collection’s final four poems.
Breen’s talents for integrating traditional poetic influences with more experimental techniques, along with his evident reverence for the tradition of Irish poetry, make this collection distinctive, compelling, and powerful.
About the Poet
OISÍN BREEN, 37 is an Irish poet, journalist, and academic, working in the field of narratological complexity.
A Best of the Net nominee, Breen is published in 100 journals, across 20 countries, including the Tahoma Literary Review, North Dakota Quarterly, About Place, New Critique, Northern Gravy, Reservoir Road, and the Madrigal. This collection follows Breen’s well received debut Flowers, All Sorts in Blossom, Figs, Berries, and Fruits Forgotten, published by HybridDreich in March 2020.
STEPHANIE GEMMELL is a writer and composer currently living in Pennsylvania. Her writing has been featured in Just Place Chapbook, Capitol Letters, The Ekphrastic Review, The Rival GW, and in the poetry anthology Falling Leaves published by Day Eight. She also attended the 2021 Glen Workshop as a poetry and songwriting fellow. She recently graduated summa cum laude from George Washington University with a BA in Religious Studies and minors in Journalism and Psychology. Her work is motivated by the unique power of art to ask meaningful questions and inspire authenticity.
First published in 2009 and a recipient of the Philippine National Book Award, Gina Apostol’s The Revolution According to Raymundo Mata is at once an exploration of the Philippines’ revolutionary past, an evaluation of the challenges of translation and interpretation throughout the process of meaning-making, and an inquiry into the role of the intellectual1 in unveiling the politics of historical truth by countering the “authoritarian version of truth” with an “egalitarian version of truth.”2 In this story about a story, it is clear from the get-go that the author writes for the Filipino readers first, everyone else second. Gina Apostol masterfully entangles and unravels the skein of Philippine colonial history, presenting its messiness in all of its complexity.
Bold, utterly chaotic, and at times hilarious, Apostol’s novel takes the form of a fictionalized memoir by a certain Raymundo Mata, a night-blind bookworm, freedom fighter, and a fan of Jose Rizal. Providing snippets of his childhood and accounts of his participation in the revolution, Raymundo Mata’s memoir consists of forty-six diary entries, which are all muddled by a present-day foreword, footnotes and an afterword from three feuding intellectuals: a pseudonymous translator, an American psychoanalyst critic, and a nationalist editor.
There is a palpable violence and madness to Apostol’s hyper metafiction—that of the Philippine revolution and language. Our translator extraordinaire who goes by the pseudonym Mimi C. Magsalin (magsalin means “to translate” in English), the person responsible for the translation of Raymundo’s diary entries, comments how difficult it was to calmly translate the memoir and declares it “linguistically deranged.” For even though Raymundo’s first language is a curious variant of Tagalog, his manuscript has scatterings of Spanish, Latin, some pidgin, and other major Philippine languages such as Waray, Cebuano, and Ilocano. Only the last diary entry is completely written in English. The first entry is nothing but gibberish, which Apostol’s fictional erudite scholars can only presume as some kind of Katipunan code, a secret form of communication of the Katipuneros.3
Dr Diwata Drake, an American psychoanalyst critic with Filipino roots from her mother’s side, writes an addendum and describes Mata’s manuscript as something filled with “the misconstructions of the ego and the malapropisms of time” and “classic psychopathologies of the tongue (typical of the Filipino, who has an irritating penchant for puns).” For Diwata Drake, Mata’s diary is also replete with suggestive instances of “frustration, aggressivity, regression—the triad of resistances that mark revolutionary pathology.”
This madness in Raymundo’s language is symptomatic of the oppression and violence of the war against the Spaniards in which he participated. It is metaphorical madness: as the ink bled on the sheets of Raymundo’s notebook, the blood of his fellow revolutionaries stained their birth soil. The Spanish had guns while the natives4 had slingshots and slippers. As for Mata’s revolutionary circle, the Katipuneros wielded a bolo5,the literal weapon and symbol of the fight for independence. In one of his diary entries penned at the start of the revolution, Mata reveals he witnessed the rather tragic end of Matandang Leon, the first katipunero whom he saw fall in battle.
Completing the fiercely quarrelsome modern-day intellectual trio in Apostol’s novel is the nationalist editor, Estrella Espejo. In the section where she writes her notes on Raymundo’s patrimony, Estrella mentions that Raymundo Mata was captured by the Americans and was in Bilibid jail for much of his remaining days. Here, Gina Apostol hints at the unreliability of our memoirist. In entry #42, Raymundo writes down the battle of Balara as the first of the many battles of the Philippine revolution. Estrella’s footnote disputes this, citing that various commentators of our history have already noted this error. It is Pasong Tamo that is more likely the first battle, not what Raymundo has written in his diary entry. Estrella goes on to say: “Why Raymundo persists in this error is obvious: he was losing his mind.” But in the editor’s preface, Estrella also writes of Raymundo: “That the storyteller is, I must admit, flawed, maybe mad, does not diminish my faith in his story. In fact, his madness amplifies its truth.”
Apostol touches on the veracity of memory and the truthfulness of historical records over personal narratives, a recurring theme in her work. The process of remembering is a dominant topic in her more straightforward novel, The Gun Dealer’s Daughter, and in Revolution, this becomes evident throughout the fracturing narrative as Mata’s accounts are questioned, corrected, and interpreted by the three academics. As such, Mata’s fictionalized memoir serves as a montage not only of his life as reimagined in fiction but also that of the whole country. Through the linguistic interactions of Mimi, Diwata, and Estrella in the margins of the text, the reader sees how Mata’s memoir becomes a portrayal of the ways in which individuals and groups remember their past on the basis of recollected memories, both personal and collective.
The push and pull between external forces, in this case the relentless annotations of Apostol’s intellectual trio, add to the maddening cacophony of voices remembering the past and the stories about stories being told. One voice writes and records, another one translates, while another one edits, and yet another one opines. This goes on and on as Apostol, with her asynchronous storytelling, takes the reader through the various threads in her novel.
In the footnotes of the three feuding intellectuals, Apostol leaves clues on how to approach, and what to expect from, the text: “[K]nowledge occurs by distortion—for a mirror is never truth, and yet for a while it relieves us of the burden of not knowing,” and “[T]he storyteller at one point indulges in infinite recapitulation to avoid decapitulation, a literal instalment.” The narrative spawns these infinities in the translation, interpretation, and retelling of Mata’s telling.
Where does the modern Filipino reader lie in this vast labyrinth? How does one reexamine the relationship between the past and the present and the manifold functions of cultural memories for the constitution of one’s identity? Gina Apostol does not provide clear-cut answers. Instead, through Raymundo’s accounts and the dizzying annotations of the intellectual trio, she shows that the rendering of cultural memories tells a lot more about the rememberer’s present than about actual past events. Their unquestioning acceptance or vehement denial is proof of the role of memory and the social dimension of dialectical truth6.
This layer to the novel leaves the present-day reader with a simultaneous sense of hope and dread. In the era of post-truth where historical revisionism runs deep in Philippine society, it is a revolutionary act to read Apostol’s novel. The victims of our country’s bloody history (whether they be 19th-century revolutionaries rebelling against colonial forces or the Desaparecidos of the Martial Law Era7) may remain just footnotes, their memories suspended over time, their stories negated by fascist narratives. In the case of Apostol’s protagonist, a freedom fighter once a footnote in history but granted his own footnoted memoir through historical fiction, there’s barely extant evidence in the manner of physical details to allow an effective tracing of his life. But we later see that dates and localizations are largely insignificant in the discourse of pain and violence. To borrow Diwata Drake’s words, “I have no wish to deny Raymundo’s story.”
Apostol’s novel does not deny historical truthfulness. It does, however, question historical accuracy. This is evident in the blending of the fictional with the factual. Raymundo Mata, with his initiation into the secret society, meets the founder of the Katipunan—Andres Bonifacio. In the teaching of our history, Andres has been inaccurately portrayed as the Great Plebeian, when in truth, he came from a middle-class family. Mata’s memoir depicts him as the well-read person that he actually was, a reader of novels like Victor Hugo’s Les Miserables and Jose Rizal’s Noli Me Tangere and El Filibusterismo. The annotations of the nationalist editor, Estrella Espejo, prove especially helpful, filling in the gaps in our history where Andres Bonifacio and other key players of the revolution are concerned.
One rather intriguing twist is a comparison between Mata’s fictionalized memoir and Dr Pio Valenzuela’s actual (and very controversial) autobiography. When news of poet-ophthalmologist Jose Rizal’s exile in Dapitan broke out, Andres Bonifacio commissioned Dr Valenzuela to seek Rizal’s advice. Would Rizal give the green light to rise against the Spanish authorities?8 As Raymundo is half-blind, Andres deemed him fit to accompany Pio to Dapitan. Any contact with the exiled Rizal would have been suspicious, so it was only fitting that Mata be introduced as Valenzuela’s patient and that their trip to Dapitan was only made in pursuit of Rizal’s medical opinion.
Our historians have long since noted the inconsistencies in Valenzuela’s version of events. And Apostol blends fiction with history to demonstrate this. In Raymundo’s thirty-first journal entry, we read about how Valenzuela travels under an assumed name, Procopio Bonifacio, and was accompanied by our night-blind bookworm, Raymundo Mata himself. Editor Estrella adds a footnote on the discrepancy in the two versions of Valenzuela’s memoirs. The first one states that Valenzuela was accompanied by Raymundo Mata and Rufino Magos, both residents of Binakayan, Kawit, Cavite. A later edition specifies that Valenzuela was with Mata the blind man and Magos as Mata’s young aide. Estrella notes: “The truth of Raymundo’s memoirs asserts Rufino Mago [not Magos] was an old man while he was the young patient. In addition, while they were both from Binakayan, Kawit, they were residents at the time of Manila: further proof of Valenzuela’s notoriously unreliable testimony.” In writing Raymundo’s fictionalized memoir, Apostol offers a counter-narrative where Valenzuela has written down misleading or inconsistent information.
In the novel’s last chapter titled “Epitaph”, Diwata Drake states that Raymundo’s memoir “seems cousin to other vibrant forgeries and textual ambiguities that have plagued this fervid democracy’s highly imaginative history.” A neo-Freudian psychoanalyst critic right through to the end, she maintains that the textual deceptions in the annals of our history “underline without a doubt the eternal trauma of the Philippines: like everyone else, it is a contingent being, born of words.”
The nationalist editor, Estrella Espejo, writes that “the Philippines may be the only country whose war of independence began with a novel (and a first novel at that)—Rizal’s Noli Me Tangere (‘Touch-Me-Not’). Our notion of freedom began with fiction, which may explain why it remains an illusion.” Before that statement, she writes: “The American revolution had farmers and dentists; the French revolution had a mob of lawyers. Our prime mover was a poet.”
A longstanding debate is whether the national hero Jose Rizal was in favour of the revolution. It is said that Rizal believed a premature revolution would only set the country to failure, the blood of freedom fighters unnecessarily shed, their deaths unwarranted. There’s also the inconsistency in Pio Valenzuela’s memoirs, which simultaneously incriminates and vindicates Jose Rizal. For Valenzuela was never clear on what transpired during his meeting with Rizal in Dapitan. Gina Apostol’s gifts of insight enabled her to humanize Rizal, who has long been idealized by radical propagandists and the general public alike.
Before Raymundo Mata joined Pio Valenzuela to meet the exiled hero, he too put Rizal on a pedestal. We read in the thirtieth entry in his fictionalized memoir: “Despite my bravado, this is what I knew: I would be terrified to speak to the man. I was glad that I had not brought my copy of the Noli—no need to ask him then about an autograph and risk looking like an idiot.”
Apostol sets enough tension in the scene where Mata eavesdrops on the conversation between Pio Valenzuela and Jose Rizal. Raymundo notes his admiration towards Pio, fulfilling his mission as the Supremo’s secret messenger to seek Rizal’s signature, the sign that the hero has given the go-ahead. As things stand, there is only one right answer for the Katipunan. Raymundo then shifts his focus to Rizal, noting that the hero knew damned well what they were up to. Here, we read a moving epiphany from Mata:
“It’s true. His bones did not matter. We wanted of him what was air and nothing, such as his name, a ghost louse-scratch. As for his novels, his words? Not futile but culpable. Blameless, but still: bloodstained. This pained him. I was shocked. This is what I got for my crime, arrant listener. Struck dumb: for this must be our Medusa, worse than a hero’s death was a hero’s truth.”
Through Mata’s eyes, we see Rizal in his humanity—a gifted polyglot, polymath, and patriot, who despite his knowledge of medicine, mathematics, and engineering, is stuck in a bind. To agree to a revolution or to warn against a premature one? In humanizing the national hero, Apostol provides a critique of the nation and nationalism.
And like a rabid member of the Rizalist cult, Raymundo Mata steals the manuscript of Jose Rizal’s third novel, Makamisa(a mix of Tagalog and Spanish, ‘after the mass’ in English). Apostol cleverly crafts the last entry in Raymundo Mata’s memoir as passages from the stolen manuscript. In the words of Diwata Drake, Mata’s conclusive memoir entry, written completely in English, interlaces with Rizal’s third novel. Our pseudonymous translator Mimi Magsalin adds that there is a resemblance between Rizal’s Spanish and Mata’s English. The novel’s anti-colonial sentiment shines here; the interlacing of Rizal’s Spanish and Mata’s English is symbolic of their motherland’s long colonial history. First, under the Spanish and later, the Americans9.
Gina Apostol takes the revolutionary fervour and psyche-searching of a historical novel and moulds it into a kaleidoscopic work of reflecting mirrors and looping intrigues. As per Raymundo Mata’s thirty-sixth entry, written in English and unpunctuated: “Like a novel revolution is never finished.” The statement could be interpreted as a subject-puzzle, as Mimi Magsalin suggests in her footnotes: “Like a novel revolution, [something] is never finished.” Another interpretation is conventional, using splice, “Like a novel, revolution is never finished.” Or perhaps it is none of these or all of these at once. In the end, the reader is left with an awareness that there is something beyond the intellectual exercise of writing, translating, and reading: something inexplicable, unfathomable, but still somehow understood.
1 Filipino poet, fiction writer and playwright Eric Gamalinda writes this blurb for Gina Apostol’s novel: “The role of the intellectual, according to Edward Said, is to present alternative narratives on history than those provided by ‘combatants’ who claim official entitlement to official memory and national identity–who propagate ‘heroic anthems sung in order to sweep all before them.’ In this fearlessly intellectual novel, Gina Apostol takes on the keepers of official memory and creates a new, atonal anthem that defies single ownership and, in fact, can only be performed by the many–by multiple voices in multiple readings. We may never look at ourselves and our history the same way again.”
Intellectuals, according to Antonio Gramsci, fall into two groups. Firstly, there are the “traditional” professional intellectuals, literary, scientific, and so on. In the second place are the “organic” intellectuals, distinguished less by their profession but are nevertheless the thinking and organizing element of a particular social class. For Gramsci, the intellectual has the responsibility of keeping society together and in harmony, creating a new consciousness for a social strata and bringing meaning and understanding to one’s role in life and society.
Gina Apostol’s novel asks the question: who are the intellectuals, what are their social functions, and are they even relevant in the modern world?
2From Edward Said’s Representations of the Intellectual. Drawing upon Gramsci’s views of the roles of intellectuals in society, Said writes that the intellectual should critique power and authoritarianism of all kinds at any cost to ensure social stability. The critical concern for the intellectual, according to Said, is the search for the Truth, which would counter oppressive power structures and fascist narratives.
3 The members of the revolutionary secret society organized by the Supremo Andres Bonifacio, they launched the Filipino independence struggle in 1896.
4 Spanish colonists called the natives of the Philippines indios. Interestingly, the term Filipino did not exist then as we know it today. It was once synonymous with Insulares, the term used to call Spaniards born in the Philippine islands.In one of Magsalin’s notes on translation, we read: “Spanish caste terms are particularly troubling for a translator of nineteenth-century Filipino society.” Magsalin asks what a translator should do when met with the term indio when translating colonial era texts. Using such a denotative term would mean taking on the Spanish prejudice but using Filipino would mean translating the text inaccurately. She writes, “I took the path of least resistance and just footnoted.”
5 Only using traditional pre-colonial single-edged knives, Filipino freedom fighters had little chance of victory against the Spaniards armed with guns and cannons.
6 On Hegelian dialectics. Hegel postulates that Truth is correspondence. We uncover Truth in the idea of others, questioning them and revealing their myriad contradictions and convolutions.
7 During the Marcos dictatorship, over 1,600 people disappeared. None of them were ever found. The fate of the disappeared remains a question mark in our history.
8 Although Jose Rizal was not a member of the revolutionary secret society, the Katipunan revered him for his revolutionary novels and sought his advice on whether or not they should start a revolution.
Rizal thought otherwise as he believed the freedom fighters needed more sophisticated weapons and a more organized strategy to mobilize the masses into rising up against Spanish authority.
But in the end, a premature revolution broke out when the Spaniards learned about the secret rebel society.
As for Rizal, he was tried and convicted of sedition. The Spanish authorities believed his novels incited indios to rebel against them.
9 The Spanish-American war ended with the Treaty of Paris. Spain sold the Philippines to America for twenty million dollars.
Born and raised in the Philippines, HAZEL ANN fell in love with reading and writing at a young age and went on to pursue Literature as her area of study in university. Her writings have appeared in national and regional publications in the Philippines, including a now-defunct multilingual folio of performance poetry Bukambibig and an anthology project telling the struggles and joys of being a young Filipina, Inday-Inday. Her review of Gina Apostol’s TheRevolutionAccordingtoRaymundoMata is her first work to be featured in an international literary magazine. She shares mini-book reviews and literary musings on her bookstagram, @literary.hazelnut.
“The virus is not so bad, it is only really concerning for the old or people with pre-existing conditions,” is a sentence I heard loud and clear too often to count at the beginning of a still ongoing pandemic now spanning more than two and a half years. I have heard it in different iterations ever since. Disabled and chronically ill people have been forced into prolonged isolation as covid continues to rage. In some cases, even that is the privileged form of dealing with the pandemic; others do not have the option. Just like they have been warning since early 2020, disabled people have been either “forgotten” or easily dismissed. Eugenicist logic is voiced by politicians and media without sustained and visible pushback. Disabled people did realize early on that this pandemic has the potential to become a mass disabling event if careful measures were not put into place. But as is so often the case, their analyses were not taken seriously.
In January 2019, the Black queer disability activist, writer, actress and model Imani Barbarin created the hashtag #ThingsDisabledPeopleKnow on Twitter. As a direct response to critiques on Barbarin’s take on disability representation in Hollywood, but also in general to the constant dismissal and ignorance of knowledge disabled people hold, disabled people shared their experiences and nuggets of knowledge under this hashtag. There is so much disabled people, especially those living at the cross-section of several marginalisations, know. This knowledge—which, of course, is also shaped by different experiences depending on the kind of disability or chronic illness the person lives with, if the person has moved through this world disabled right from birth or acquires it later in life and other factors—might include an on-point analysis of societal structures which add to people being disabled, nuanced critiques of capitalism but also information on how to keep things sanitized as well as possible.
In the midst of the daily onslaught of ableism provided by people negating Covid, I found myself drawn to books written by disabled and chronically ill writers, especially non-fiction that engaged with our possibilities to live and to create lives worthy for all. I was hungry for the wisdom, humour, poetic phrases and biting commentary of fellow chronically ill and disabled people to counter a world in which our very right to existence is daily debated. I longed to see disability and chronic illness as a well of possibility, a lens which enables inclusive thinking.
The first time I felt truly seen in my experiences of pain, was when I read Sonia Huber’s essay collection, Pain Woman Takes Your Keys, in 2017. One of the essays is titled “Welcome to the Kingdom of the Sick” and I felt that embrace while I leafed through the pages. In the book, Huber writes about her experiences as a white woman with chronic illness and pain, looks at the (US) health system, analyses common discourses on health/ illness, and asks what pain actually is/ means/ does. This might sound dire but this book made me full-on belly-laugh, especially while reading Huber’s take on the pain scale. Even if you are not chronically ill/ disabled, you might have been asked by a doctor to judge your pain on a scale from 1 to 10. And while other more complex and accurate pain scales do exist, this is still the most common one employed in a medical setting.
I have my own devastating experience with this scale as I was asked to name a number a few years back in an ambulance on the way to an ER after not one, but two trains were stalled as the conductor—seeing the amount of pain I was in—did not feel well leaving me at the train station without knowing that the ambulance had arrived. In the ambulance, I named a fairly high number for the pain I had just experienced though I already felt better. The ambulance driver ridiculed me and replied that this number was only appropriate for a woman if she was giving birth. Without unpacking the gendered (and surely cis-normative) assumptions, the full irony is that when I was finally diagnosed a few months and many ER visits later, I found out that a lot of people who had the same illness and had given birth compared the pain levels and judged birth to be less painful. But even if taken seriously, a privilege many chronically ill and disabled people—especially multiply marginalized ones—never have, one sole reply to the pain scale as a single data point seems so utterly useless. Huber’s tongue-in-cheek “alternative pain scale” instead is practical, relatable, and more importantly, funny. Her steps include: “4. Couch. All I want is my couch and Netflix”, “8. Do you still love me? Someone tell me they love me because I worry you hate me when I am in pain. Am I irritating? Is it hard to love a near-invalid?”, “13. I can’t read. The sentences are too hard. Remember when books?” and “20. Am I going to puke? Would I feel better if I puked?”.
The tone within the collection changes from lyrical to outright snarky, the form from essay to open letters to lists. The writing and stylistic choices themselves are an echo of living in constant pain. It is not just the content but the form as well which changes, adapts, and makes room for new approaches. A lot of the texts are fairly short. Some of the texts do not have long paragraphs but are written in a sort of poetic staccato: sentence, sentence, sentence. This way of writing reminds me of how my mind works under the stress of pain and the accompanying brain fog. It takes a lot to even formulate one coherent thought in one sentence as the concentration span is often incredibly short. Another lesson here: The specifics of your disability/ chronic illness does not only affect your perspective on things but also the ways you will be able to convey the knowledge you have.
I will admit that it is not always easy to truly embrace such lessons. While I nod reading and agree with what feels like my entire being, there is a lifetime of ableism lying like heavy sediment on all my muscles. It’s difficult to shake that off. It’s hard to divorce oneself from societal values and expectations around health, productivity, and what makes a good life. Eli Clare takes the metaphor of a mountain and runs (stumbles, moves carefully?) with it in their 1999 essay collection, Exile and Pride. Disability, Queerness, and Liberation. They ask how many marginalized people have tried to get up the mountain and how many marginalized people measure their lives assessing how close they get to ascend the mountain. Clare writes: “We’ve hit our heads on glass ceilings, tried to climb the class ladder, lost fights against assimilation, scrambled toward that phantom called normality.” They go on to explain that all our lives we are told the summit is worth it and the only reason for us not making it is that we are lacking in one way or another.
But the thing is, this mountain and its paths up were never meant to enable everyone who wishes to make the journey: the paths are not accessible for wheelchairs, the signs are only ever in one language, the necessary gear is too expensive for many, and the knowledge of how to use the gear is not widely shared. But even knowing all of this, it is hard to not want to even try for capitalism also tells us that if we don’t even attempt to achieve the arbitrarily set goals in this society, we are losers.
Reading Clare’s beautiful descriptions of this struggle helped me partially reassess my priorities. During the pandemic, I found myself sicker than I had ever been before. When I was diagnosed, my body was ready to shut down. I was told that I could fall into a coma at any given point. I was given the choice that either the specialist doctor in whose office I sat would call an ambulance and send me to the hospital or I could go home to monitor my situation and come to the doctor’s office every day in the mornings for check-ups. I chose the latter and was told that if I were just five minutes late, they would call an ambulance to my home as they would suspect that I am in a coma or dead.
In 2019, I would have chosen the safety of the hospital without a doubt but in February 2021, I was afraid I might contract Covid in the hospital. On top of everything, that would be the last straw. I was also afraid of not being able to keep in touch with anyone. I of course didn’t even have a phone charger on me. As you read these words on your screen, you will have already rightfully concluded that in the end, I made it through. I did not die and I also did not fall into a coma. But even after this harrowing experience, for a couple months more, I tried to run up that mountain.
I would like to say that I returned again to Clare’s words immediately—or similar words by other fantastic disabled writers—let them speak to me, and found the strength to do the necessary cuts in my life. But even if all this knowledge is out there and we can consume it, sometimes it still needs therapy, weeks of crying, and a full breakdown in the middle of the night to not only intellectually get the message but actually feel it and act on it accordingly. A few weeks after I committed to a very difficult decision in order to make my life more livable, I fell ill with a rare, but often curable, disease on top of the chronic illnesses and issues I already carry. Now, one year later, I still wait to hear the words: “You are healed from that disease.”
The first book I read about disability which also touched upon the Covid pandemic was Shayda Kafai’s Crip Kinship: The Disability Justice & Art Activism of Sins Invalid. As the title shows, this is not a book about the pandemic as such, but how could you write a book within the pandemic about disability justice and not refer to the ongoing onslaught on disabled people? Sins Valid, founded in 2005, is a performance project rooted in Disability Justice and centers, in particular, disabled BIPOC and LGBTQ artists. In Crip Kinship, Kafai documents the history and praxis of Sins Invalid and analyses how the project tackles or relates to topics such as community, storytelling and art-making, education, the titular crip kinship, sex and pleasure, beauty, and manifesting futures. The book is an incredible source detailing not only the work of Sins Invalid but it also deepens one’s understanding of Disability Justice as a concept and as praxis.
Kafai’s words deeply resonated with me when she describes how living through this pandemic, the climate catastrophe, and just the day-to-day of this world has affected her in the past few years. She writes: “I used to have expectations for humans that I don’t anymore. It’s sobering to experience a pandemic and see how difficult change is for people. It’s sobering to see how much pain the ocean can be in and how few fucks humans can give. It’s painfully sobering. I’ve had to do some serious expectation management of our species. You can only get heartbroken so many times before you recognize the nature of the beast.” I have read this paragraph so many times. It has fueled my anger but it has also soothed something in me. To see a person outside of myself give voice to these ideas actually ignited brief sparks of euphoria as in the middle of the often isolating experience of living during Covid, I felt deeply connected to others who are experiencing the same things as me.
As a result, Crip Kinship is not a sad book but a hopeful one. Shayda Kafai celebrates the knowledge production and inventive praxes of disabled, chronically ill and Mad people. She refers to the archives they carry and the intergenerational memory banks which exist, the stories which are told and retold and the effect this can have, especially when the perspectives of “radical disabled, queer of color contemporaries, elders, and ancestors” are centered. This knowledge could enable us to dissect white supremacy in all its forms and layers for colonialism, capitalism, racism, ableism, hatred towards trans and queer people and other forms of suppression are interlinked in their roots and effects. Kafai sees disabled people crafting themselves new routes to follow, the routes which will hopefully show us all how to circumnavigate the metaphorical mountain once and for all.
Disability knowledge–or whatever term you might find for it–is so rich but, thanks to ableism, it is all too often disregarded. Disability knowledge is about how we observe the world, how we understand and make sense of the world, how we move through the world, and how we make our own existence possible. Disability knowledge spans from vast and complex theories to the exchange of information on the nitty-gritty of navigating everyday life. One writer, artist and activist who exemplifies this is Leah Lakshmi Piepzna‑Samarasinha and during the last two years I found myself re-reading two of her books I had at hand: Care Work: Dreaming Disability Justice(2018) and Tonguebreaker: Poems and Performance Texts (2019).
In the former, Piepzna-Samarasinha writes about the history of disability justice and their justified fear of this movement being co-opted, about rethinking care and access, suicidal ideation, new models of survivorhood, so called call-out culture, and making space for disabled/ chronically ill elders. Again centering the experiences and knowledge of disabled/ sick/ Mad QTPoC, especially femmes, Piepzna-Samarasinha documents activist history (which is (made to be) forgotten or over-written), offers practical tips (for example in her essay “Chronically Ill Touring Artist Pro Tipps”), and discusses conceptual work like “care webs”, which describe ideas of collective care outside the medical industrial complex. The content and context of creation is also reflected in the different text forms: there are essays, lists, and conversations with other artists and activists.
Tonguebreaker takes up a lot of similar themes but sees them reflected in poetry and other kinds of performance texts. The variety of forms Piepzna-Samarasinha employs throughout her works offer access points for different kinds of people but it also might speak to different parts of one and the same person. The texts help me to think through specific problems but also lead me to my emotions. In Tonguebreaker, they describe disability as “adaptive, interconnected, tenacious, voracious, slutty, silent, raging, life giving”. It is this contradictory truth which many abled people seem not to grasp at all but which is also often difficult for disabled and chronically ill people to access as we too have to wade through ableist thoughts and teachings. Still, for us to be able to think about disability in such a way is a lifeline.
This essay was due months ago, and then again a month ago, and then again yesterday. In my early twenties, I prided myself on making deadlines work, on being reliable, and pushing through. I still often make plans as if my body with all its realities wasn’t mine to handle. But in the last month, I had to suppress my immune system to treat one illness (a special joy in an ongoing pandemic which many treat as if it’s over) and the domino effects of medication led to me having to inject myself four times a day for a totally different illness. I have been struggling with extreme fatigue, not making it through a day without sleeping. I have been constantly in heightened pain. There have been changes in medication again and again. There are new tests scheduled. This is draining.
Living with chronic illnesses and disabilities often means to balance feelings of “more of the same” and “wow, not another drastic change”. It means ongoing adaptation. It means grieving a version of yourself which you will never be (again)–often not only once, but again and again and again. Dealing with it in the middle of a global pandemic often is more heartbreaking than usual as everything we know to be true about our ableist societies seems even more acute, dangerous, and damning. And while books are not the only source to disabled knowledge–and books and longer written texts are not accessible for everyone—they are one important source. Picking up non-fiction books by disabled and chronically ill authors allows us to feel connected, allows us to dream up better futures and to find some tools which help to manifest such a future. In October, Leah Lakshmi Piepzna‑Samarasinha’s latest book will be published. It is aptly titled The Future Is Disabled: Prophecies, Love Notes and Mourning Songs and I, for one, cannot wait to take another step towards a new world which includes us all.
When CHARLOTT SCHÖNWETTER was ill as a child, her parents always gifted her reading material. Now as a chronically ill/ disabled adult she feels she always has the perfect excuse to get herself new books. Her writing on pop culture and literature has been published mostly in German language publications such as an.schläge,ak analyse&kritik and WASD – Bookazine für Gameskultur. In English, she shares her thoughts on books, culture, and politics regularly on Instagram (@half_book_and_co) and less frequently but more in depth in her literary newsletter Have You Read…? (https://tinyletter.com/haveyouread).
ALIYAH WARWICK is a student in Maharishi International University’s MFA in Creative Writing program. She enjoys dabbling in dance, puppetry, Dungeons & Dragons, and languages like Italian and Swedish. You can find an essay she wrote about her experience learning Italian in Zenith Literary Magazine. Her poetry was published in Lothlorien Poetry Journal and will be featured in the forthcoming anthology, Conestoga Zen, Issue 2.
fimbria pulling the delicate pearl into my cistern,
my red sinew.
I can see the Tor from here! I shout,
climbing mound after mound of the Green Mother’s body.
The Earth is fertile. And I have my poppy seed.
It is symphonic and delightful.
Eat the water, my pearl, my shining descendant,
I say to star in my belly,
eat it with your hands.
This egg tells me that ova need more than water,
that they desire fruit like their other mother.
I am an orchard woman now.
cells dividing in their miniature geometry.
In a library of embryos, this one would shine
and sing upon me–
unfolding like lace made of light and new flesh.
She is the animal, burrowing, and I am the dirt,
and I am already full of her;
her scent, her texture.
She looks at me in the dark,
and I think, there is no country, no volcano
wide enough to hold this child.
I call out anyway:
Come to me now, in these startling millennia,
and show me your first, truest form–
scarlet, sharp, and female.
ALORAH WELTI is a nineteen-year-old Minnesota-born feminist, synesthete, and emerging poet and artist. Her work has been featured in the anthology Re-membering with Goddess: Healing the Patriarchal Perpetuation of Trauma (Girl God Books, 2022) and is upcoming in Allium, A Journal of Poetry & Prose. She currently lives on stolen Mohican and Wabanaki land, now called Berkshire County, Massachusetts, with her family.
Flitter of sunfish. This lake ebbs and bubbles and hums.
Flimsy butter and russet leaves
coat the grease that spills from motorboats. Toads sing
with puffy glands. Spur-throated insects jaunt in mud,
their spindly legs. Ting.
Wind sharpens, the thumbs
of flimsy butter and russet leaves
join in whirlwind dance
atop dusk-light on water. The lithe swan
plucks at plumes, white bits interlace
and swirl as if writing. Spinning in gusts, wings
of flimsy butter and russet leaves
attic scattered hay
searching beneath snarls of wood
for words unfurled purred
(in the y of yes,
and circle e, one arm curved
with flowers, and s)
in broken shingles.
rain gurgles, beams stow moisture.
I have spent my life
(Stuck in the twilight
is a tumble of bright stars
that blink up and down)
searching famous homes
–palms over smooth floor sanded
down to a softness
the side of your thumb–
carriage house in franklin rumored
to have housed him
(in the bottom drawer
Nathaniel Hawthorne’s bureau
gauze holds baby teeth)
said to have held her
(munch’s girl, signed lithograph
her frayed hair —)
void of memory,
useless tasks, I do not grieve
for my father.
ROSAMARIA is an experimental playwright, poet and screenwriter from Boston, MA. She writes for both indoor and outdoor stages, and is an alum of Company One Theatre of Boston. Her latest poem, ‘Aunt Mariana’s Dream,’ was published in Truancy Magazine in 2019. Her short play, ZOE AND EDDIE: ZOOM, was included in the Smith and Kraus Anthology, Laughter is the Best Medicine, December 2021. Rosamaria is currently working with Nuisance Barking Productions filming her new project, a short horror, ‘Viola.’
AARON LELITO is a visual artist and writer from Buffalo, NY. In his photographic work, he is primarily drawn to the patterns and imagery of nature. His images have been published as cover art in Red Rock Review, Peatsmoke Journal, and The Scriblerus. His work has also appeared in Barzakh Magazine, Humana Obscura, EcoTheo Review, and About Place Journal. He is editor in chief of the art & literature website Wild Roof Journal. See more of his work on Instagram @aaronlelito