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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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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.