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A Penanggalan in Transylvania- Part 1

Part of the Wheel of the Year Series inspired by Weave by Deirdre Sullivan and Oein de Bhairduin. This story was written for Samhain.

Image shows the Samhain image for the Wheel of the Year, with the Weave book in the foreground, a Death Tarot Card, and Black Obsidian and Mookaite Jasper. In the background is a ghostly typewriter with a skeleton hand a book of spells with a glowing purple eye in the centre. Featured Image above shows Bran Castle, Transylvania, Romania.

A Penanggalan in Transylvania

29th October. Brasov, Transylvania. Left London at 10.30am, on 27th October, arriving at Bucharest late that evening; should have arrived at 5.30pm but the flight was an hour late…

I disproportionately enjoy starting my journal entry for my 35th birthday trip to Transylvania in the same format as Jonathan’s Harker’s in Dracula. I have brought it along with me on the train from Bucharest through the Carpathian mountains, now gloriously dressed in its autumnal gowns. I have never seen such colours on the trees- the gold and ochre of beech and deep carmine-red pine against forest green spruce, and every so often, the rising spire of a diaphanous silver fir. They are plucked from the shadows and glow in spotlit golden swathes like little forest fires. Deep within, bears lumber and wolves prowl, and the Carpathians, like a great, curled, sprawling beast, threaten at any moment to swallow the pretty villages like Brasov which nestle at its feet. 

I am struck by a paragraph on the first page which had never before captured my attention: 

“I read that every known superstition in the world is gathered into the horseshoe of the Carpathians, as if it were the centre of some sort of imaginative whirlpool; if so my stay may be very interesting.” I wonder if such superstitions could extend as far as my own lineage, to my mother’s side in Malaysia or my father’s in India.

I am bound for Brasov to present at a Dracula Conference coinciding with my 35th birthday.

Before leaving, I visited my parents in our family home in Dublin. My mother had been more solemn and emotional than usual. 

“In our family, Chinta, a woman’s 35th birthday is very important,” she said. “Still no man, Isha? No children on the way? What about that nice doctor you were dating?”

My last boyfriend had only a PhD in English Literature but my parents liked to fixate on the technicality of his being a doctor.

“No Ibu, we’re not seeing each other anymore, remember? We wanted different things.”

“And what is it that you want, eh, Chinta? You don’t want a family?” Every year she had grown more distressed as the prospect of my having children grew ever more distant. This year I sensed a change in her- something closer to resignation. 

“I do want a family Ibu, but it’s not my fault if it doesn’t happen for me. Is it so bad if I don’t end up having children? What about Siti Auntie? She’s happy, isn’t she?” Siti Auntie, always glamorous and windswept, would bring us trinkets from her travels around the world and enchant me with bedtime stories of fairy tales and myths she picked up on her adventures. As a teenager she showed me how to wear her signature red lip, and although I shared her silky black hair, my mother would not let me wear it as long as hers, which tumbled all the way down to her hips. 

“Hayo, always you want to be like Siti Auntie. No matter what I tell you.” We were standing alone in the kitchen after dinner, putting away the dishes. “I have something to give you, Chinta. Stay there.” She went upstairs while I stared at my reflection in the window over the kitchen sink. No crow’s feet yet. The marionette lines at the corners of my mouth were deepening. I felt a sense of finality as the axe came down on the first half of my life, and realised that I was really and truly no longer young. 

My mother returned and in her hand was an old, faded green, leather-bound journal. She handed it to me. Its thin tawny leaves were falling out and barely held together, the binding worn, the ink I glimpsed was almost translucent. 

“For over a century, this book has been handed down to the women in our family Chinta, always when they turn 35.” 

“Why wait so long?” I asked. “Isn’t 16 to 21 the usual age for passing on heirlooms and that sort of thing?”

“At 16 or 21 you are still girlish, you think you have the rest of life ahead of you. You are full of youth and beauty. At 35, all that is gone-”

“Hey!”

“But this is when you really have become a woman. Just take it with you on your birthday trip.”

It sits in front of me now, this withered ancestral relic. My mother gave no hints of what it contains, which feels very strange for what I have grown up perceiving our family to be, a typical South and South East Asian family, emotionally open, expressive and unrepressed. There is some generational wound here, something which even my family will not touch and feels the need to push away. Delicately, I open its time-worn pages and begin to read. 

Monday August 30th, 1808. Kampung Gunung, Penang.

Yesterday I made his favourite foods in the hope that it would soften him- ikan bakar in banana leaf, ikan bilis and sago gula melaka. I spent hours making them just right, according to Ibu’s recipes- melting the gula melaka sugar to the perfect consistency on the stove, pounding the chillies for the sambal, picking the fattest fish from the market to steam- but when he came home he complained that the whole house and I were stinking of belachan and that now he would go to work tomorrow stinking of it too. 

And my shame almost swallowed me today when I met Aida, my new bidan midwife. She is young for a bidan, and so she does not have much of a reputation, but she is all I can afford. She is kind and beautiful with dark, clever eyes. She found some of the bruises and wounds that I am normally able to hide as he is careful enough to make sure these are on the private areas of my body. 

She told me that if he continues like this I will lose the baby. I don’t know what to do. 

I wish I could run away to the tops of the mountains. 

Friday September 3rd, 1808 

Allah have mercy on my soul for I have lost my mind! I cannot describe or believe what has happened. It cannot have happened. I must write it down. Perhaps I can make sense of it if I write it down. 

There was so much blood, blood all over the bed. When he saw what was happening he left me and the baby there to die, in agony. I could see the moon through the window and hear the breeze and then through the smell of blood and sweat, the stench of vinegar. I thought I heard a baby crying. When I looked at the window there was a face staring back at me, a woman’s face as white as the moon with long dark hair and eyes rimmed with black. And where her body should have been, there were slick, glistening, bloody organs, a beating heart, two throbbing lungs, tubes of intestines, exposed dangling viscera. 

The next moment she was in the room, her face and her long hair leaning over me. “You will be saved,” she said. 

When I woke up the next morning, all the blood was gone. My nightdress and the bed were clean, white and damp only from sweat. 

I found enough strength to prepare dinner for him, just in case, but he never came. I sat alone at the table and despite everything, for a moment, I enjoyed the warming laksa soup, and slurped my noodles like a schoolgirl. 

That evening I went back to Aida’s house, which like ours was a rumah panggung on stilts, though hers was closer to the wild mountains on the outskirts of the kampung village. The water around the house was still and glittered in the moonlight. Drawing closer, I heard the growling of a tiger or a black bear coming from the forested hills. The lights in the neighbouring stilt-huts were out. 

“Aida,” I called after climbing the steps to her porch. “It’s Maeena. Please let me in.”

She opened the door in her nightdress. Her clever eyes were lit with both concern and curiosity. “Of course Maeena, come in.”

She sat me down on a wooden chair in the corner of the room and brought me a glass of kopi cham. The mild stimulant helped soothe my nerves, but there was something about the house that was making me uneasy. 

“Aida, I think I may have lost my baby.”

“Yes, Maeena. You have.”

I began to wail. “But my cantik,” she said. “You have also gained life.” 

“What do you mean?” 

“Your husband has left you, yes? He has run back to his mother’s village to torment the next woman. And you are still alive.” 

“Yes,” I said looking up at her. “But what if he comes back? What if he doesn’t? I don’t know which is worse. I won’t survive without him- I will starve.” 

“No you won’t, my cantik. I know a way for you to survive, and be happy, and free. Freedom- that is what you want more than anything, isn’t it?”

I nodded. 

“And you shall have it. I will teach you the ways and rites. But I must warn you- this path is not without its own pain.”

I listened carefully. “I am sure it is no more painful than the life that awaits me otherwise.”

She nodded. “I know. It is why I have wanted to show you since the moment I met you. Follow me.” 

I followed her into a back room, through an archway with a curtain of finely painted beads. Before us within the wooden framework was a bathtub surrounded with candles. And that was when I realised what had made me uneasy. It was the smell of vinegar. Under her frangipani perfume, Aida reeked of it. In front of us, the bathtub was full to the brim with it…

“Isha, we’re nearly here, this next stop is for Brasov.” One of my colleagues who was travelling with me was standing in the aisle with his bags, leaning over my shoulder. “Wow, how old is that book?” 

“About two hundred years old,” I said, shutting it and getting my belongings together. 

“What’s it about?”

“It’s an old family heirloom.” I thought back to the stories my aunt had told to me when I was a child. “I think it’s about an old Malaysian myth. Kind of like our version of a vampire. It’s called a Penanggalan.”

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2023 Retrospective on Longing for Sunflowers

Image shows a hand holding a brass-gold sunflower locket on a chain in the sun. In the background you can see a beach, blue sky and blue sea

It has been 10 years since I first started a blog, Longing for Sunflowers, as a recent graduate of 24- today, I am 34 years old.

It is fascinating to look back at this time capsule and see how much life has changed- in one post from 2018 I was excited about the potential of a film few had yet heard of called Black Panther– most of the beloved late night cafes that formed an important part of our youth, including Accents, have since closed.

I can see, looking back, the pressure I put on myself to be happy, and to be always “in the light”-something that afflicts us more when we are young. It was a time before Inside Out showed us how unrealistic this pursuit is and the importance of sadness, when mental health was just beginning to be publicly discussed and accepted, and when opening up about it was seen as genuinely courageous at best, or weak, oversharing or attention-seeking at worst. There was no concept of taking “a mental health day,” or the little such things that have now gratefully seeped into our culture.

Some of the posts are hard for me to read, particularly “My Story” and “My Tumultuous Relationship with Public Toilets-” both of which delve into the decade of my youth, from 13 to 23, which was largely lost to major depressive disorder. It is a shock to remember how I used to feel on a daily basis, how much mental energy I used in fighting to stay alive. I have healed so much since those days to the point where I no longer recognise that suffering young girl, and feel nothing but compassion for her. To have come from a place where “I would cry as I pulled at my miserable limbs, throwing my “useless”, disabled body around in anger, ripping up shreds of newspaper in an attempt to calm myself down,” every day when I came home from school, to the woman I am now, so comfortable in my body and proud to be disabled that I am organising and leading Ireland’s first Disability Pride and Power Parade- see here– is hard to believe. The teenager who wrote “Soon you will be free” on the walls of the toilet in secondary school where she used to hide to eat her lunch and cry is indeed free at last, and has lived such a beautiful life since.

Clarissa Pinkola Estés’ feminist classic Women Who Run With the Wolves, offers Jungian interpretations and retellings of myths and folktales. One of these, the Mexican ghost story La Llorona, is reinterpreted to symbolise pollution of the creative stream or flow. La Llorona, the ghost woman of the weeping willow, trails her tendrils and drags her withered knuckles through the waters, wailing for her lost children. Estés’ interprets this as a cautionary tale inviting us to recover from the stream our own lost children, the creative brain-children and dreams which we tossed aside and let drown. Julia Cameron in The Artist’s Way calls these aborted brain-children our “creative U-turns.”

Longing for Sunflowers is one of my lost creative brain-children. I abandoned this child in the stormy waters of 2017, the year I went to study veterinary nursing, only going back to post two more articles in 2018 during my Journalism MA, and nothing in the six years that followed. Part of the reason was that I no longer wanted to be associated with that pain and my old suffering self, to have a constant reminder of the years I had lost, and how much catching up I had to do because of it. I created a new writer’s website here which reflects my growth in other areas.

But recently a friend changed my mind- in the writing group we started with my dear friends from college, including the same Liz who featured in “My Tumultuous Relationship with Public Toilets,” it was our friend Nuala who told me how much she had loved Longing for Sunflowers. She lives in London now, but the last time she visited me in Ireland in our favourite place, Chester Beatty, she gave me the beautiful sunflower pendant you see in the image above. Knowing that someone had deeply connected to it made me return to my neglected creative self, the old wounds, and to see that I had abandoned what was a very raw and worthy piece of my soul.

Estés wrote:

“If we were to abuse our children, Social Services would show up at our doors. If we were to abuse our pets, the Humane Society would come to take us away. But there is no Creativity Patrol or Soul Police to intervene if we insist on starving our own souls.”

And making the necessary time for our creative lives is indeed a soul-saving act. I am learning to say, as Estes says we must: “I love my creative life more than I love cooperating with my own oppression.”

So I have decided to return to water the sunflowers, alongside the pieces of me and my activism that are now flourishing because, alongside aid from the universe and the people who show up along the way, I consistently dedicated thousands of hours to nurturing them.

What creative brain-children have you abused and neglected? Is there a chance for you to save them and in doing so, recover and tend to a lost part of your soul?

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Surya Namaskar

Image shows a close-up of praying feet, with brown skin, on a pink yoga mat with a dreamcatcher motif in black

This piece was chosen for the Irish Writer’s Centre’s Breaking Ground Programme and performed in the IWC.

The photo above, “Praying Feet”, shows my own feet and yoga mat

I unfurl the yoga mat for the first time that day. It is soft and spongy and the deep burgundy-pink of beetroot stains. To me it smells faintly of jasmine and petroleum. I lay my hands flat on its slightly sticky surface, fingers widely spaced, and move into cat–cow, Marjaryasana Bidalasana, stretching my neck out high on the cat. Air moves into my lungs, into my very bronchioles, and I feel the muscles of my chest begin to stretch out like the wings of a bird. 

I stumble on the low lunge. I always do. High Lunge, Tree Pose, Vrikshasana, Dancer, Natarajasana –and most of the Standing Warriors – are off-limits to me. But whether alone or on the beach, it does not bother me.

The only times it did were in classes, in Yogahub or the Yoga Studio in Phibsboro. I remember the women with their Lululemon tank tops, the tiny smiles on their faces whenever they saw me stumble, a survival-of-the-fittest pride in themselves as they held their contorted limbs out behind them, wilfully suppressing the alien body’s tremors. These were the same women who could be seen waiting outside for the early morning hot yoga classes, carrying their Chilly’s water bottles, ready to break into a sweat and learn poses to re-enact on the beach the next month in Bali – alongside photos of plant-based smoothie bowls for Insta leverage. 

I struggle to accept that this heavily diluted, white-hybrid thing that has emerged in the West is, in fact, just like me – appreciated by white people for its exoticized appeal, divorced entirely from its root.

So much of myself and my body is uninhabitable, contested territory. On the yoga mat, I am just a soul, muscle, bone and breath.

There are so few spaces in which I can safely exist, away from the transfiguring stares of society. The pain of such compounded Otherness is overwhelming.

I know no language but that of the Coloniser.

Even though I am a singer, I do not have the vocal flexibility to hum my father’s favourite song, ‘Khabi Khabi’, nor any of the songs of my heritage. I cannot evoke an oral historical tradition like the sean-nós singers of Ireland. I have no history.

I have never seen anyone who looks like me, all of me, on television.

*

When I was a child, I refused to wear my splints. I wouldn’t do any of the leg exercises I was told to do by the nice lady at Cerebral Palsy Ireland. I didn’t want to be seen as anything but ‘normal’.

While the other children were doing PE outside in the playground, I preferred to stay alone in the classroom, finding solace in books. In them, I did not have to confront the limitations of clumsy, clunky flesh that would not work to my will. I did not have to face the disappointment of never being able to soar like the wind just by using my legs, to jump or climb a mountain.

I felt that my body was broken, an unfit vehicle for the size of my spirit. It could not possibly carry me through life, so I found my wings within a life of thoughts, rather than of sensations.

And then that, too, failed me. Through adolescence and young adulthood, it was all-too easy to access a fragmented universe of suffering.

Broken body, broken mind, broken spirit, dislocated from existence.

*

Perhaps the thing that started me back to wholeness, to reclaiming my body-being, was the sea.

I approached it first like a timid lover, wary of being annihilated by the power of the Other, swept up and lost in its depths or crushed to powdery shell. It took a while to learn to catch my breath after the shock of slamming into ice but, once immersed, I felt like a new-born baby: weightless, buoyant and effortlessly free. Here, in the water, my body could do whatever I wanted it to; I could walk; I could jump; I could almost run.

After the sea, it was sex. Raw, all-embracing sex that made me feel that my body could indeed climb mountains and fall from the precipice of them, floating back down to the land, thrumming with electricity.

And after sex, it was singing and the voice – roaring myself into being, roaring myself free – whether at protests with disabled and non-disabled comrades; or with my multicultural choir, singing in forty different languages, not truly understanding the words, but understanding everything that mattered.

My body was just a body like all others, unique in form and functionality.

And I practised being one with it every day, every morning, on the yoga mat.

*

Surya namaskar.

She does not understand the word

Will never know its origin

But right now, in this moment,

She is the word,

The whole word

Stretching to heaven

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Delayed Birth: A Warning

Image shows a picture of the moon white with grey shadows on its surface against a black sky

This story was based on an archetypal dream and published in the literary journal for horror and magical realism, Mama Grande Press, all the way back in 2012.

It can still be viewed online here: Mama Grande Issue 2

The moon that night was larger than she had ever seen it before; it shone through her bedroom window like a nightlight in the darkness, this smooth and luminous pearl of a moon.

She lay in bed, lulled into a half-sleep by the sibilant hush of the trees tossing their leaves in the wind outside. All the while this young woman with dark hair strewn loosely across her face and her arms wrapped gently round her belly,

was thinking of the child she carried inside her.

My baby, my sweet- child of my womb; you who carry my hopes and dreams: you will never know suffering like mine, I promise you that.

You will not make the same mistakes that I did, no- you are far too strong; I can tell by the force of your kicks. I dampened my own fire, held it back when it would have burned me free-

I held my fire back for others, and so in time, it went out.

But yours will never go out. It will burn with the light of a million stars.

How wonderful it must be to have a heart as pure as yours, one that can trust and love so boldly, without knowledge of pain. My own is so bruised it hurts to the touch, and my mind

is heavy, foggy with darkness and fear. I am weary, and no longer young.

But you- you will come into the world with fresh eyes full of wonder, seeing only magic and beauty around you. All the beautiful things that I ever felt, thought or believed- that is you, and so much more. You will live the life I would have lived if only the world had let me. My child, you are the person I was meant to be.

As soon as she thought this she knew that it was time. A few minutes later her water

broke

It all rushed together; the blazing red streetlights whizzing by in the drive over, the wailing of the ambulance, the stark white of the hospital walls and doctors’ coats- everything coloured by sharp, shocking pain.

Then she was being wheeled through double doors and before she knew it, she was screaming in a hospital bed surrounded by doctors and nurses, and pushing with all her might. It felt as if someone were ripping her apart from the inside with a knife.

“Don’t push! Don’t push!” The doctor cried.

“Relax, please! Let the baby come out by itself. She wants to come out, she’s ready. Don’t push her.”

But she couldn’t relax. How long had this baby been growing inside her? God only knew. It was high time for her to get out already. So she pushed as if there was a ticking time bomb between her legs.

And then she stopped. Fear, irrational, began to wash over her.

What if she’s not ready? What if I’m not ready?

The expectant eyes of the doctor and the nurses were on her, waiting. She felt herself

shrinking.

And, ever so slowly, she felt the baby begin to retreat back up inside her, back up to the womb where it was safe.

“Miss Falter, what are you doing? Whatever it is, you must stop it immediately,” the doctor warned. But it was too late; she couldn’t stop the thoughts from rolling in now.

What if my baby is only half-grown? What if she’s ugly? What if she’s so monstrously hideous that it makes people sick just to look at her?

She felt the baby retreat even further.

What will become of me when the baby is born? What if I don’t survive this and only my baby does? What if she’s not strong enough to make it on her own in the world?

– No

We’re not ready. We need more time.

The doctor sighed heavily and began to stand up. The energy went out of the room as in a deflated balloon. One of the nurses smiled sympathetically at her, while another gazed blankly into the distance.

“Well I’m not sure what just happened, Miss Falter, but it looks like yet again there will be no delivery today. I can’t help but feel that you interfered with the process to your own detriment- but not to worry; your baby is ready to come out, and she will do so when the time is right. In the meantime, go home, get plenty of rest, and we will no doubt see you back here again shortly.”

She gave him a weary, apologetic smile, and he patted her kindly on the shoulder as he left the room.

*

Miss Falter went home that night and waited… and waited. But the days turned into weeks, and the weeks turned into years, and eventually she forgot what she was waiting for.

Her once swollen bump became a much more inconspicuous little potbelly. The kicking, which had been so fervent in the earlier stages of her pregnancy, gradually grew weaker and weaker until she no longer noticed it.

She carried on living her ordinary life, all the while knowing that she was waiting for something, but she could not for the life of her remember what it was.

Soon she fell in love with a man named Jim and felt that this, this must be what she had been waiting for. But even after they were married, she could not help but think that there was something else that needed to happen, something she needed to find in order to make her life, herself, complete.

Her career took off and in the course of it she received many promotions and accolades, but there was something missing.

Most of the time it didn’t bother her, though; she had become Comfortable Enough. Comfortable Enough with her life, and Comfortable Enough with the waiting.

And then one day she was lying down in her bedroom at night once more, her eyes brimful of moon.

A beautiful, tender melody was playing from somewhere downstairs; Jim must have been listening to classical music again with his nightcap glass of Single Malt Whiskey. The music rushed up in her, vibrant and colourful, kind and forgiving. For a brief moment she remembered that she was a soul, here, alive, for reasons mysterious and unknown. She had a duty to fulfil, but what was it?

Her spirit rose for an instant and she felt it, something both ancient and young stirring within her, something that ached and called for Life.

She sat up in bed and focused intently on it, but though she tried she just couldn’t make sense of the stirring, the rumbling in her gut.

I must be starving, she decided, finally. Better go make myself a sandwich.

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The Closest Thing to Power

Image shows a poster of the movie "Freaks." A banner on top reads "The Story of the Love Life of the Sideshow." On the bottom with 3 different pictures, reads "Do Siamese Twins Make Love?" "Can a Full Grown Woman Truly Love a Midget?" and "What Sex is the Half Man Half Woman?" The bottom quote reads "Louella Parsons says 'for pure sensationalism "Freaks" tops any picture yet produced. It's more fantastic and grotesque than any shocker ever written' The surrounding pictures show many stills from the movie, including pictures of the siamese twins and sword eater.

The following story is part of a set of “mirrors,” which aim to form a narrative history of disabled people’s experiences, excavating lost voices and highlighting what has and has not changed.

All of the freaks mentioned in the following story are based on real historical people or an amalgamation of them.

The Closest Thing to Power

I

I was known as the Living Torso, The Amazing Half-Boy.

I was born a living, breathing monstrosity: a freak of nature.

Such terrors must be explained. So the story went that my mother, having been abandoned by all the men in her life, by her father, her husband, her brother, that God took pity on her and gave her child who was born without legs so they could never leave her.

Such terrors must be explained, and it was said that as my mother was continually abandoned, first as a child by her own father, and later by her husband, she was granted a consolation from God: I was born without legs, so I could never leave her.

But I did leave her; I left her to join the Sideshow when I was 15 years old- and I became a legend.

Oh yes, I had quite the illustrious career in showbusiness. I became wealthy enough to buy my own home. I even had a beautiful wife and family, and how I was able to accomplish the latter was a matter oft-speculated on in the papers and scandal rags. Not too shabby for a small-town Irish immigrant, fleeing poverty in the wake of a Famine which claimed the lives of stronger men than I.

They said I should have been strangled at birth, but I was a relentless survivor.

I learnt my first trick when I smuggled myself onto a ferry by hiding in a suitcase and spent my early career begging on the streets, giving a free show as I walked on my hands and rolled cigarettes with my mouth. My main concern in those days was having enough bread to eat and avoiding the workhouse and institutions built for people like me. They used to stare at me in terror, ridicule and humiliate me, throwing oranges and rotten eggs;  it turned out that I was more threatening to them out on the streets, trying to blend into the crowd as if I had the right to be there and make a living as one of them- but up on the stage, taking my place with the other human curiosities, I was a spectacle of wonder, a performer; they gazed at me in fascination, and whether their stares belied disgust or delight was not my concern; they had always stared at me, but for the first time, I was getting paid for it. 

There is a power in being able to command people’s attention. It’s the closest thing to power I’ll ever know.

I found a true home and belonging among the other freaks, unlike anything I had ever experienced. The Skeleton Dude, John Coffey, was a good friend of mine. He was as I am, a fellow Irish degenerate, and he looked as deplorable as any of the deathless sacks of bones one could see dragging themselves about during the Famine, but I’d seen him devour more food in one sitting than the Bearded Lady of Geneva or the Irish Giant, née Patrick Murphy, put together.

I once opened for Chang and Eng, the inseparable Siamese Twins, and shared the stage with Sealo, who had flippers for hands, and the Dog-Faced Boy whose face was hairier than the curls on the chest of the Strongman.

I liked to play games with the Pinheads, who seemed to us perpetual children. I believe they were removed from a mental asylum, along with Koko the Bird Girl. Who will ever know which cages they preferred, the institutions or the bars that held them on stage, the bars they thrashed against in their supporting role as primitive ape-men. We all existed somewhere on a spectrum between human and animal, but the Pinheads and the genuine African exhibits were the most exotic freaks of our merry band of depraved and deformed cast-offs.

I have seen our kind subjected to much violence, out there in the grime- in the circus ring we have some degree of protection. That is not to say that freaks are always kind to each other, or that the carnie life is as romantic as young runaways suppose. A callousness reveals itself when freaks are up the pole with beer. I was there the day they humiliated Tom Thumb in front of his little wife Lavinia. They sat him on the shoulders of the Hermaphrodite and carried him all the way to town, refusing to let him down despite his tormented pleas. He would have been arrested or murdered by the townies had not the sorrowful Irish Giant, the Bronnach, frightened them with his stature and stolen Tom Thumb back to the circus.    

The sideshow has taken me farther afield than I ever thought possible: I have played to packed-out audiences in London, America and across Europe. But when my two children were born, I began to retire from the stage, making only the odd appearance to sustain our now rather modest wealth. Yes, many once-affluent freaks have died penniless, robbed and deceived by managers or crooks; showbusiness is a ruthless profession.

Our drawing room walls remain lined with posters from my sell-out shows. “Come See The Most Astounding Man Alive!” They proclaim. You can see me playing the grand piano dressed as a gentleman in my trouser-less jacket and waistcoat. No one has ever seen the tiny, deformed limbs I hide inside it; it contributes to the half-boy illusion of course, and this way I appear quite dapper, and not quite the freakish monster they expect. Yes, I am proud of them; I am proud of my adventures in the sideshows. But I do not want my children to follow in my stead. We would have made quite a spectacle as the real thing, unlike the many staged freak families- but the thought of seeing my children paraded like that the way I was, is somehow distasteful to me. I hope they will have better options to make something of themselves than I did. In quiet moments, when I am honest with myself, I see that I was nothing but a penniless scoundrel who exploited the only thing available to him- a body deemed so hideous, that it made him a star.

II

They called me Duck Boy, after the mutant character Ducky in Toy Story. He had the head of a duck, which I don’t have, on a torso body, and walked with his hands, which I also do. I was born with sacral agenesis, or caudal regression syndrome; this means that the lower portion of my spine did not develop fully. I still have legs, but I’m not able to walk with them and prefer to use a wheelchair or move around the house on my hands.

I am proud to be disabled, but I didn’t always feel this way; I used to feel ashamed of how I was formed. The taunts of the children in the playground still haunt me; when I walk down the street people still stare and gawp and yell out “freak.” 

My family and I were always worried about how I would survive and make a living, and I have struggled to find work and get off disability allowance. But three years ago, I appeared on the reality TV show “Undateables,” and since starring in that series, my career has taken me in new directions I never thought possible. I am effectively a minor celebrity, though not very well-paid. I’ve been on quite a few chatshows, reality TV shows and documentaries, one which just follows me in my day-to-day life, and I campaign for disability issues.

I have yet to meet anyone with my physical condition: the only people I have heard of with sacral agenesis were freak performers in Victorian sideshows. This rarity makes me, in a sense, more valuable in front of the camera, though I doubt I have the appeal of say, Abby and Brittany Hensel, the conjoined twins whose reality show made them truly famous.

Sometimes I wonder if I should feel exploited for being a “poster child”- but if I can earn a bit of money and draw attention to the causes, I don’t see any harm in it. People have always stared at me growing up, and when I perform or stand before the camera, I feel in charge of what used to be an oppressive situation. I feel I am owning my own power; it’s an act of self-love and acceptance. I love my body, I see it as normal, and I hope that if people are more exposed to different bodies, then maybe one day, eventually, they will come to see us as normal too. Perhaps it’s a naïve hope.

I still long for a romantic connection and to start a family. I do know of plenty of people in the disabled community who have married and had kids and led relatively normal lives, despite the title of the show I was in, but I have struggled with dating myself. I had a girlfriend for two years after the show. She was non-disabled and at first, I couldn’t believe that she would find me attractive. It was a form of validation and made me feel recognised as normal for the first time. She was the love of my life, but she moved to Australia, and we couldn’t make the long-distance work. I was too afraid to leave Ireland and lose my disability allowance and medical card. Perhaps one day I will move to LA where the bigger studios are, though either way I doubt I will ever be able to afford a home.

My Tinder profile used to have a picture of me in which it was not immediately obvious that I was disabled. I once experimented by not giving a girl advance notice of my impairment. I showed up at the restaurant, giving her no choice but to reveal her instinctive reaction, and sure enough her jaw dropped. She laughed horribly as she took a picture of me and sent it to her friends, and as she left, she patted me on the head as if I were a child or a dog, a docile animal, something subhuman.

Since appearing on TV, I can no longer hide my disability- every prospective date knows how to Google- and I wouldn’t want to. It’s part of who I am and I’m not ashamed of it.

I have recently found a great sense of belonging in the disabled community and the independent living movement, in connecting with others who are like me. Perhaps we can improve our situation by collective action.  

If I ever have children, I hope that they will never have to be in a show called “Undateables.” I hope that some day, our bodies will be normalised and we will finally be seen as fully human. I want to still be around when that day comes.

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Dear Late Late Toy Show: We Need to Talk About Disability

This article was written in response to the Late Late Toy Show in November 2020 

Image shows Ryan Tubridy in a Christmas jumper with santa hats on it, smiling and arms outstretched, with “Toy Show” in bright lights behind him

This year’s Toy Show was, in some ways, perhaps the most uplifting and successful in living memory; this year more than any other, the nation was hungry for a boost of optimism and Christmas cheer.  I gathered with my family in my Christmas pyjamas like I have every year since I was a child, to soak up the glitz and glee. And I was uplifted as we all were, by the sentimental impact of seeing adorable children’s dreams come true, by the generosity of the Irish people and the comedy of Tubridy being a bigger child than the children. 

But for me and many disabled people who I have since talked to, there was an element of the show that made us feel uncomfortable and disappointed.

Let me first start by saying that I commend the Toy Show for including more disabled children than ever before to review the toys. I believe the 2018 instalment was the first time a disabled child was brought on the show in this capacity, besides the usual pre-recorded Temple Street fundraising play montage. I was delighted then too to see books in braille being reviewed by a visually impaired child. This year was probably the first, in the twenty-odd years that I’ve watched the show, where children with other physical disabilities and wheelchair-users were brought in to review toys and it was incredibly heartening to see that change.

Last year Tubridy “made it his mission” to include homeless children on the show (which I was again thrilled to see being acknowledged) and who knows, perhaps next year will feature children in the abhorrent Direct Provision system. If this year was for featuring disabled children, then it is a good opportunity to start a discussion about how disability is shown in the media, and how far away we still are from a progressive understanding of what disability is.   

Most people are not aware of the media models of misrepresenting disability. These are a foundational element of Disability Studies as an academic discipline. They include the Medical Model, the Charity Model, and Disabled People as Inspirational. All of these are opposed to the Social Model, which is the view that disabled people themselves prefer. The Social Model acknowledges that it is not a person’s impairment that disables them, but societal barriers. It is therefore used to support the fight for enhancing disabled people’s rights to full participation in society. The Medical Model treats the problem as being solely in the physical impairment and is linked to the Inspirational Model in that disability becomes a person’s duty and burden to individually overcome. It also implies that having a disability is tragic and it makes non-disabled people feel that they should be grateful for their comparative state of being.

Among disabled people, we do acknowledge that having to overcome societal barriers at every turn, including the pain of being seen and treated differently as a child, and endless barriers as we grow up, does require the development of strength and immense and often heroic character. The children who appeared on the Late Late Toy Show are indeed inspirational for what they have had to endure from a young age and the shining characters they are. No one can possibly diminish their heroism or question anyone attached to them.  

In future, I wish to see all guests on the show participating and being treated equally, without the need for much demonstration of disability or mobility.

Our children’s hospitals should not have to struggle to raise funds in the first place; surely it is the duty of our Government to provide for the health and treatment of our children. How did we get to a place where this cannot be done without private funding and amassing of public donations?

The key point is to let this be an opportunity to spark discussion on how producers can make sure to sensitively involve disabled guests and media portrayal in a way which will empower and promote even more uplifting messages. Our understanding of what disability is begins in childhood, and the difficulties we face only increase as we get older. Let’s make sure our society is aware of the huge changes that need to be made at a structural and cultural level to really ensure the health, wellbeing and full participation of all our citizens. 

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On “Inspirational” Disabled People

The following piece was published in the ILMI E-Bulletin, Friday 27 Nov, 2020: 

Image shows the Channel 4 poster with the words “Meet the Superhumans” in white across the middle, and “The Paralympic Games on 4” as a subtitle underneath. In the foreground are 8 Paralympic athletes with various disabilities, posing confidently, against a misty grey and black background.

When I think back to my first ILMI AGM in September 2019, I remember I couldn’t help but feel inspired; it was the first time I had seen so many disabled people together in one room- so many vocal, proactive disabled people. I, like many others who’ve been initiated, realised we’d been missing this our whole life- a community, bonded by the drive to collective action and empowerment; a way to embrace our disabled identity, to find support through each other. 

Over time though, there was something in my reaction that I was wary about- I couldn’t help but see these amazing people who had achieved so much- more than I had previously hoped to- as inspirational.


As you know, this is a dirty word in the disability community, popularized as ‘inspiration porn’ by the late comedian Stella Young. I began to worry if my being inspired was a function of internalized ableism.


In some ways it was. The bar on the expectations I had for my own life was being raised by meeting disabled women who were mothers, who could drive, and who worked full time jobs- all things I thought being disabled would prevent me from achieving. But the crucial difference is that I always knew it wasn’t a matter of physical impairment, but that I felt the fight to achieve them in this society would be too much, too depleting, not worth the sacrifices to health.

When I think back to my first ILMI AGM in September 2019, I remember I couldn’t help but feel inspired; it was the first time I had seen so many disabled people together in one room- so many vocal, proactive disabled people. I, like many others who’ve been initiated, realised we’d been missing this our whole life- a community, bonded by the drive to collective action and empowerment; a way to embrace our disabled identity, to find support through each other. 

And that is the crucial difference between ‘inspiration porn’ and disabled people inspiring each other. “We are learning from each other’s strength and endurance, not against our body’s diagnosis, but against a world that exceptionalises and objectifies us,” said Stella.

Inspiration porn also contributes to the stigma of mental illness. It tells us that “The only disability in life is a bad attitude.” Although I have CP and use a wheelchair, I have been most impacted by mental illness, which I take medication for and manage holistically. My whole life I have been, in negative representation terms, the opposite of a supercrip- a villain- one who was unable to overcome her only disability of a “bad attitude”. And I still believe it; I still feel that I am the sole cause of my suffering and that my condition must be overcome and fixed.

Sarah Fitzgerald recently wrote a great piece on her blog where she shared her moments of doubting the social model. The internalised ableism we hold against ourselves takes time to excavate. The social model still isn’t recognised, and is seen as particularly audacious when it comes to mental illness. Rather than giving people the supports and reasonable accommodations we need to participate in education and employment, we are written-off as being too damaged to be functional citizens. So, when I see fellow disabled people pushing against these barriers, it gives me hope that I can do the same and reminds me of where the problem is really located.

When I think of some of the things our amazing members have achieved, whether climbing Mount Everest, overcoming institutional abuse, writing incredible poetry or organising to bring about political change in recognition of our rights, all while having to fight every day in a society that impedes us at every turn- that is inspirational. We shouldn’t have to fight so hard, but the fact that we do makes me proud to be part of this band of poets, intellectuals, warriors, creatives, leaders, and everyday heroes.  

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#NotAWitch More Prevalent Than You Think

The following article was published in the ILMI E-Bulletin, November 13th, 2020

Image shows Nessarose, a lady in black with hair tied back, sitting on red cushioned and gilted wheelchair throne, looking ahead in the distance with Elfaba, the emerald green-skinned witch, in black hat and robe, kneeling beside her, listening. Both are against a a black and wooden stage background.

I have to admit, the #notawitch controversy surprised me. I thought, haven’t there been centuries of damaging cultural representations like this which nobody seemed to care about? I worried that the outrage to a seemingly fantastical deformity made us look oversensitive. But I was wrong because finally, here it is: a modern representation so blatantly monstrous even to the able-bodied that once you understand it you can’t but be horrified. Maybe, finally, what we’ve been saying for decades will be understood.

Unbeknownst to me, the limb difference that Anne Hathaway’s Grand High Witch displays in the recent 2020 adaptation of Roald Dahl’s The Witches, is exactly a form of ectrodactyly, or cleft or split hand, where one or more fingers may be absent or differently formed. The original book and 1990 movie only mentioned “thin curvy claws, like a cat,” which were likewise concealed in gloves. It teaches children to watch out for the terrifying signs of a witch, and I distinctly remember my childlike paranoia as I watched out for women with violet eyes. Other children now will do the same, and the fact that this might be the first time these kids will have seen their condition represented onscreen, and in such a context, makes it more devastating.

 We are all familiar with the lamentable trope of the disabled person as villain, the implication being that “deformity of body symbolizes deformity of soul” (Longmore, 1987). Most of us have at least one of these horrible portrayals that got under our skin, and you are not a snowflake for being deeply hurt by them. For me it was, funnily enough, another witch that I wish had been called out instead of celebrated: Nessarose, the Wicked Witch of the East from Wicked the Broadway musical of 2003. I was 17 when I saw it in the West End, and instead of it being a magical experience I was reduced to an inconsolable mess of tears on returning to our hotel room. My sister says she will always remember how much it affected me.

Nessarose was one of three sisters, including Glinda the Good Witch and the rebel Elphaba, who becomes unfairly coined The Wicked Witch of the West- unlike her disabled sister who “deserves” her fate. The injustices Elphaba experiences because of her skin colour (green) are central to the play. Some of that revolutionary spirit should have been transferred to Nessarose. But alas, weary of her “sorry life,” she begs Elphaba to cure her. “All my life I’ve depended on you and this hideous chair with wheels/Scrounging for scraps of pity to pick up and longing to kick up my heels”. And lo and behold, the miraculous walking scene, typically met with cheers from the audience.

Once “healed,” the boy who dated her out of pity decides she no longer needs him and leaves to find the woman he really loves. Enraged, she casts a spell on him with dire consequences, thus sealing her fate as a “tragically beautiful,” “alone and loveless” villain- the fate her condition warrants.
This portrayal damaged and embarrassed me and played on my teenage fears that I too was a burden who could never find love. Let’s hope the Wicked movie due in 2021 will not be a repeat. Despite what these cheap attempts at creating impactful characters depict, we are none of us hideous or tragic, there is nothing wrong with us and we are infinitely lovable.

#notawitch

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The Disabled Body Beautiful

Image shows the sculpture “Alison Lapper Pregnant,” a white marble statue of a woman with short cropped hair, naked with a pregnant belly, and a stump below her shoulder, against a blue sky with feathery clouds

The following piece was published in the ILMI E-Bulletin, October 2nd 2020:

“I am never going to conform to society’s requirements and I’m thrilled because I am blissfully released from all that crap. That’s the liberation of disfigurement.”

“The Sexual Politics of Disability,” by Tom Shakespeare et al.

I know I wasn’t the only one who seriously enjoyed last night’s chat with Clara, a disabled BIPOC fashion model and blogger who runs the Rollin Funky blog and Instagram page. This woman is glamorous, vivacious, and has a massive collection of HIGH HEEL shoes- yes, that’s right. As a wheelchair user, she is at an advantage on the runway; she doesn’t need to worry about stumbling. 

I have never worn high heels in my life. The appeal of Carrie Bradshaw’s stocked closet was always lost on me, and with it, a seeming rite of passage to womanhood. Can you be sexy if you will never walk like Rihanna?

Fashion and the cultural norms represented by it have an inescapable hold- somehow it was not until I was 26, after finally ditching the perpetual runners I’d had since childhood for knee-high boots and Doc Martens, when I realised how infantilised I had felt- shoes.

I had come to see my disability as liberating me from the shackles of societal beauty expectations. While able-bodied teens around me were developing eating disorders in their pursuit of the perfect body, I was released from suffering the illusion that my body could ever conform to such ideals represented in the media. Having a disability helped me see through the bullshit. I had to stand firm in my belief that there was no such thing as the perfect body and that all bodies were beautiful by virtue of being spirit incarnate. “And if the body were not the soul, what is the soul?” as Whitman my saviour sang.

And yet such media representations of able-bodied beauty are insidious. That’s why we need people like Clara making sure we are represented and seen in this sphere, which also extends to the runway of life. When we are seen truly embracing our bodies, our mere presence and existence is defiant in and of itself. When we love our bodies despite being told otherwise, we liberate others from these misconceptions.

As Clara said last night: “I think it’s important to embrace your body and have self-love for your body. A lot of the time when we hear about body positivity we hear it in relation to size- we don’t necessarily hear it in relation to different aspects of ability. Sometimes people automatically think that if you are differently abled you can’t be body positive and you can’t have self-love. I think it’s not true, it’s society’s ideas, this wanting to fix something, and make you feel like you’re not worth gold, and you most certainly are. You are everything that you are, and you do not need to be fixed.”