The Things We Know: Finding Comfort and Fire in Disability Knowledge During a Global Pandemic

BY CHARLOTT SCHÖNWETTER

“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).

The Groundskeeper and His Seven Lawn Mowers

The Groundskeeper—name Mr. Lenard Lentin—was found in the midst of the July heat by his estranged daughter, Mae Dean Wilde, neighbors said, “alive, afghan-covered, sitting up in the middle of his living room with nothing ‘cept his clothes: a short-sleeved shirt and a pair of jeans.” The living room was 41 degrees; the lights had been turned off. The Groundskeeper’s hands were blue; he wasn’t dead, but the carpet he was sitting on seemed to be so.

Neighbors in Greenbrooke started calling Mae Dean a month back, after the Groundskeeper began using their garages, without permission, to store the junk he had procured from the garage sales he frequented each Saturday and Sunday. Each neighbor said lots of things about the Groundskeeper, as neighbors do.

“Began buying tools at first: shovels and rakes, clippers and trimmers. Then came measuring things: measuring tape, rulers, measuring cups, a pedometer, a T-square.”

“The Groundskeeper was constantly getting things ready without readying anything at all.”

“Bought all kinds of hangers, too, without anything to hang them on.”

“His mowers (he had at least seven) he kept in top condition, often spending more time with them than he did tending his own grass or his house or his second wife, Martha Minnie, which must have pissed her off awful.”

“One mower or another was always upended on the sidewalk. Later it’d turn up parked in one of our garages.”

The Groundskeeper used to layer the grass back and forth with a sequence of mowers—using different mowers for different parts of the lawn, overlapping sections, and then pulling out the old silent push mower for the final touches. He sculpted to perfection, lining the edges, trimming the bushes and pruning the trees. He snarled at errant footballs, whose misplaced bounces found their way onto lawns, turned up his nose at beer cans or paper scraps that blew in, got down on his knees like he was praying and picked them all up.

“Don’t get me started on the cursing he called the leaves.”

“For just a hair’s breadth, after he’d finished a job, the patch of grass was near perfect as it could be. There was no room in that moment for any kind of disappointment at all.”

Then, in early July, Martha Minnie died, and the verdant world he made of his life turned brown overnight. Neighborhood lawns soon followed and faded to yellow—strange curled and busted patches fell up in swirls, clover and dandelions grew like kudzu.

The neighbors rapped on his front and back door—tried to peek inside; doubted he was there but knew he was there; walked around his house and kicked up great moments of dust they later found would not shake away.

Some thought the Groundskeeper gave up when Martha Minnie died. Others whispered through their teeth the word ‘breakdown,’ but, most waited for the Groundskeeper to reappear, for the dead circles to give up their ghostly swirls, for the grass to snap back.

“We rummaged through our garages, hoping to catch a glimpse of him. Instead we found shovels and rakes, measuring tools and empty hangers.”

“We searched through the bags of seed and empty water cans while our grass continued to brown and fall away all together.”

“We wished the Groundskeeper would tend to our lawns again.”

One night in July, neighbors thought they heard him walking around on their roofs, cleaning out their gutters so rain water wouldn’t pour off onto their patios and find its way into their basements or flood their garages. They heard the sounds of wet leaves hitting the ground like bombs. Then, Mae Dean found him huddled in the afghan Martha Minnie had made from patches of discarded yarn she had forever collected. The Groundskeeper sat in the middle of the carpet, which had turned to thatch.

In September, all but a few neighbors called the big lawn maintenance companies. They watched from their windows as men came in trucks and rode riding mowers and plugged in electric trimmers and stood around scratching their heads over brown spots. The men suggested turf, which came in large rolls that they spread out like green carpets.  

“We heard the sounds of landscapers’ machinery—the shrill buzz of distant electric clippers and riding mowers but wished for the distant hum of a single lawn mower. And, during the late afternoons, the silence was deafening when we realized the garage sale leavings—the measuring cups, the weedwhackers, the shovels, the rakes, the empty hangers, the water cans, the seed, and the seven lawn mowers, even the silent push mower—were for us.”


J. BRADLEY MINNICK is a writer, public radio host and producer, and an Associate Professor of English at the University of Arkansas at Little Rock. Minnick has written, edited, and produced the one-minute spot “Facts About Fiction,” which celebrates influential authors and novelists with unique facts from their lives. These spots air weekly on UA Little Rock Public Radio and its affiliated stations. In 2014, Minnick began work on artsandlettersradio.org, a show celebrating modern humanities with a concentration on Arkansas cultural and intellectual work. He has produced over 100 episodes, and this work has been acknowledged by the 2016 national PRNDI 1st Place award for Long Documentary for “Sundays with TJ,” and a 2020 SPJ Arkansas Diamond Award for Long Documentary/Investigative Reporting for the two-part “They Liked My Phras’n: The Life and Music of Rose Marie McCoy. He has published numerous journal articles and fiction.

The Demigod

I first saw the word ‘severe’ chiselled into the lines arranged on Baba’s face. Until then, all I had wanted to see, was ‘here’ or ‘fire’, maybe ‘revere’ instead of ‘mere’. What I received after ten years, just as I was getting to know myself, was rejection. I had never stared at a blank grey slate of wall— like I had nothing better to do, like the drool slowly leaking out of my mouth’s corner was welcome. Nobody actually adopts this vegetative state of their own accord. Isn’t it always thrust upon you? The arrangement of ‘severe’ was on his face but it severed me. So many things became clear then. The world was nothing as I had imagined. Baba taught me this lesson thoroughly. Guileless as I was, his words became both the holy word of the Veda and the sentence that incarcerated me. Aai’s odhni fluttered in his hands, the material so tender and transparent that I wanted to risk snatching it back.  Baba had returned home before I could remove Aai’s odhni and ‘nausea’ crawled over his face at my appearance. In that moment, it fought the lines of ‘severe’, before emerging victorious. I could not decide which word was worse. My mouth burned with the red stain of lipstick. Long clumps of twisted hair, which some people called luxurious, shivered on my shoulder, a drooping rose still stuck somewhere in it, one twist hanging along my left eye. I wanted to find it annoying but couldn’t. My ankles hurt in their raised position inside the awkward shapes of outsized heels. Aai’s metallic belt which she only wore for her Bharatnatyam performances (an expensive borrowed item), pressed diagonally across my chest. Some loose thread from holes in my vest caught the sharp edges of metal. I was afraid to remove it. Would his nauseous disgust not turn into uncontrollable rage?

Before that day, I’d had an indifferent relationship with my body. It existed and as long as I could do whatever I liked, I couldn’t care less about this subjective object. It was just a thing I was born with, like our surname. Upon hearing it, people turned their heads to the side and spat (Aai said it was the ‘jaat’ – our centuries-old meaningless burden. I thought it was all the same). I haven’t bothered to know when the definition of this relationship between the object and the self began to change. Maybe it was always there or it started years back. The lines on Baba’s face said none of that mattered. Did I matter? I suppose not. Is this the lesson he wanted to teach? Either way, this is what I will take with me as long as I live. Decades have passed and the cement of this lesson grows like a living thing, indifferent that it might be killing another living being – the one it resides in, on it’s metaphorical rise. I thought I knew then, what ‘severe’ meant but now I can write a Master’s thesis on it. You are surprised I know what that is. Isn’t it common knowledge – a thesis? If ‘ordinary’ people like you know it, so do ‘others’  like us. You never asked. But then, in my experience, ‘ordinary’ people think they are the only ones making up the world. I would call them naive instead of my ten-year-old self. Have I changed my surname? You ask. I did, years ago but there’s no shame in admitting it. Your mouth presses like you can’t decide your opinion about it. But I know that these small shreds of self I share in my tiny square-metered room, demand a certain toeing of line from you. My silences, the set of my brows, the line of my mouth, the twitch of my tongue and palm, the movement of breath in my chest, all demand it. I don’t get to act out this luxury – negotiate my worth – very often. I won’t admit this to you though. As it is, I never have the upper hand except in these minutes between seven and eight on the clock’s face. Sometimes, when you don’t want to give in, you look around the recently painted blue walls which appear gloomy and gagging. An easy lone bulb hangs in the center, always still because the single-hand-sized window hardly brings a breeze to sway it. In your ‘generous’ moments, you say I am like this stationery filament in glass. I can tell now when you will say this. The first time it was an enormous struggle to hide my hurt. Now, I cover it like pulling up a sheet before sleep.

I keep secrets from you as well. One day, I walked barefoot to the Elephant-headed God’s temple. I complained of the blisters as I stood in front of the idol adorned with gold and sweets. I whispered a wish that my troubles would melt like cotton candy instead of lingering like rotten pigeon droppings or the water that refuses to drain from streets during the monsoon. I pleaded in the cold silver ear of the still mouse whose eyes had glazed after hearing so many wishes and cavils. And then I left my faith at the temple’s doorstep.

Once, I brazenly walked inside a mall, with the privilege of the word ‘ordinary’, past a conflicted security guard and snatched ordinariness for myself. I tucked the belt of my purse delicately, my limbs flirted with delicacy in your absence. I marvelled at my figure reflected in each ceiling-length mirror that passed. I entered a store branded with a neon-pink sign and the person floating about in this perfumed place demanded all my attention. Their lips were violently purple, eyelids violet and glistening, cheeks moister than mine on a sweaty day, and smart black heels matched with a lacy, ruffly skirt! I think I fell in love! Not with the person but… their presentation? Their air? Their naturally upturned cheeks? They were a person from some dream I had never dreamed, a dream I had but forgot. I go there as a treat. I went there the day I heard Aai, my solace, had passed away. I went there once just because. I don’t think I like ‘that’ world more than ‘this’ world. Maybe because we live the same everywhere. I remember many people before you admitting reluctantly that I had special powers. That I could read what they thought. You laughed when I confided this but I have caught your uncertainty flitting from brow to chin. It doesn’t matter. Baba’s lesson taught me much more than he intended. It granted me my power, or maybe it only awakened the power’s nerve. This power courses in my vein when I give sincere blessings to strangers on streets in exchange for money even as they tumble out insults or rejection gruffly. It surges when I am waiting in a queue for my turn in some degraded role at a village Tamasha, yearning that the audience has come to watch me perform. It percolates underneath the layers of my skin when I swallow the insults borne by the man inside me, seconds ago. It cowers when I see children directed by their families to recoil at my presence, women desperate to become pregnant gingerly placing money over my palm. They stare and stare some more. How did I become so soft and plump, they wonder. Am I not supposed to have hardness all over me? The Goddess knows I have enough in my heart.

Baba’s face in the shape of ‘Severe’, should have cut everything from me, even all forms of love. I had believed this until you daintily held my pinky. You still do at the beginning, middle or the end of our meetings. You declared I was Bahuchari Devi in earthly dimensions, a child in her reflection. The ten-year-old self in me awoke from slumber then. Sometimes I wonder how or why it is that the things they shrink away from, you touch and taste and explore. How do you do it? Can you show them how to do it? Would it make an easier world for me? Would I no longer need the sword or trident? You touch the hoops around my ears in reverence. I remind myself that I am a being of one gender attracted to another being of a different gender. I permit myself to place the lines. Over my face, yours, our bodies. The glistening freshly harvested grapes that are our skins. Thick matte hair curling up, where I please. You caress the marks on my skin made by ‘severe’, which blend into scars left after my skin stretched. You say you can’t understand beauty, but this is something close. I know what it cost, so I think it is. The shock of parts which ought to be there, absent in reality, this surprise of yours recedes with every meeting. You are still trying to understand me, but I want to scream “take me as I am!”. I wonder if you have the courage. I dare not ask. I’m damned to this shrunken state no matter how much ordinariness I have stolen- that is my greatest fear.

My more slender counterparts get away with metal tinkling at their ankles, necks and ears. They receive stares when they move in numbers. Chitra who lives beside me in the same narrow smothering box, has frequent call-ins from different men on different dates and hours of night. I get insecure when I see her carefree smile. That long flowing hair and delicate frame of bones is very attractive nowadays. Her face isn’t heavily set in gloom or cursed like mine. I know she, like everyone, must have their share of sorrows. Until I see it, I can’t feel sorry for her. But Chitra gives me strength. On days when my body refuses to get out of the tangled sheet, I listen to her coming and going out of her room. I stare at the long lengths of my fingernails. Sharp little swords. Sometimes red, other times pink. Currently chipped, uneven. It takes a lot to maintain their length. In times like these, the power unique to me, vanishes altogether, but I know I have only to call on it. I wonder what would make it stay permanently. It doesn’t act upon me or dare to surge when I look at how ‘affection’ falls on your nose. It only comes when I am alone. Is that a good or a bad thing?

Today, I am back to Baba’s lines spelling ‘severe’. Baba, the people from the chawl I grew up in say, has become obsessed with the lethal white powder that he deals people. I imagine Aai’s horror-struck body rustling. Her grey ashes adulterated by wood, have long since absorbed into soil, cloud and ocean. Someone politely alleged that I have a mental illness. A week ago, this white collar man nervously brushed his moustache and called me an animal roaming on his streets. Ex-lovers hang under my lone window and instead of ever singing a song of pining or yearning, their words lash and whip my back- ‘Hijada Whore’- Eunuch Slut. In all these decades, I haven’t gotten used to this. I can’t pull up a sheet like I do before sleep.

Now anger drives fatigue out. My powers might be stronger. I want to yell and fight with Baba’s face spelling ‘severe’. A chromosome gave me the body I have. Neither Aai nor Baba asked what I felt like. ‘Ordinary’ people change their bodies on a whim. This body isn’t my body until I claim it. If my self can’t unfurl and fill every crevice, is it really mine? Baba shouted that the world will laugh at me. I want to scream right back at him- why did you work, vote for and make a world that will mock me?

A journalist has asked to take my photos and when I meet them, they enquire about my real self and this way of life. They ask if they might be present when I make love to you. They hastily assure me they will pay me for it, but I feel apprehensive, hesitant. They gently murmur that I wouldn’t be the only one, they would ask Chitra for consent as well. ‘Consent’, suddenly I hold the word and turn it over like a treasured coin. That is how you treat me differently, how I have unwittingly reclaimed the oldest self of my past. I take the tiny relief and freedom and tell myself to make do with what remains of living. I comfort myself that the ten-year-old had always been right because a world that doesn’t let people discover and assert who they are, becomes an unlovable hell. I wrap saris, tighten petticoats and blouses, slide over kurtas and salwars, draw bindis, weave flowers and wear thin anklets, slip into peeling heels that fit better- each act in defiance of Baba and ‘his’ world that is just ‘a’ world. I sit on the Goddess’s rooster as another incarnation, hair flowing, limbs swinging. I whisper to the figment of Baba that the lesson he wanted me to learn was never learnt, lost and buried in that memory. I have seen the shape of ‘severe’ but now I cut and pierce the meaning. The power flows and speaks more clearly than ever. I make words mine.

For you. My lover, it is ‘I’. For the world, it must be ‘she’ and ‘her’ but they only see ‘he’ and ‘him’. Baba wanted me to sacrifice myself so he placed a word that meant it-‘Samarpan’ – over me. I scratched the first name out and wrote ‘Sumaiyya’- pure, high, exalted. I sacrifice to no one but myself. This is the legacy I create for myself and ‘my’ world, so that Baba’s patrimony eats itself, erodes with the acid borne of my reclaimed body, and vanishes out of existence- like it was never there.


SAMRUDDHI is a bibliophile and manga otaku since twelve and knew she wanted to become a writer when her teacher said her school essays were too outré. She writes short stories and literary reviews and is currently working to publish her first novel. Her literary review has been published in the ‘Verse of Silence’ literary magazine. She practices Japanese Calligraphy for inner peace and loves dogs.