The Darkness in Children's Literature

CW: Spoilers for The Graveyard Book, Coraline, and A Series of Unfortunate Events.

I often introduce myself as “Caroline from North Carolina,” a simple device that helps people remember both my name and where I’m from, but I confess there’s a particular misremembering of my name that I’m fond of. When the Coraline movie came out in 2009, people called me that name for weeks, mostly as a joke, a few times sincerely. I didn’t watch the film until I was eighteen—nine-year-old me saw the trailers and was terrified—but I read the book when I was ten, mostly because I was just curious about the name being so similar to mine. I immediately fell in love with my almost-name twin, sparking my lifelong love of Neil Gaiman. Though my younger self was a voracious reader who would never have admitted to a preference for a specific genre, reading everything from Junie B. Jones to Gone With the Wind (in the same year!), I look back and realize how much dark children literature I was fond of: Coraline, Gaiman’s The Graveyard Book, A Series of Unfortunate Events. I loved the whimsical fantastical elements, the morbid humor, and the conspiratorial narrators who seemed to understand that certain dark and monstrous things children understand much better than adults.

These were books for children who didn’t fit in. A common theme in literature, obviously, but much less palatable than cheerful, fluffy children’s lit with its neatly tied-up happy endings. (To this day, I still am not sure what happened in Lemony Snicket’s The End, and I’m still dying to know why the sugar bowl was so important.) These books had characters who didn’t fit in not because they had odd hobbies or felt self-conscious about their braces or hated pink, but because they were children recovering from traumas: dead or abducted parents, murderous villains chasing after them, metaphorical and literal ghosts haunting them. Yesterday when I recommended the movie Coraline to my roommate, she mentioned she was too freaked out by the button eyes, an aspect of Coraline that I both adore and am terrified by.

Remembering The Graveyard Book in particular, it’s hard not to read it through the lens of a disabled person. Bod, the protagonist—short for Nobody Owens—is a child raised by ghosts; he’s taught various skills that stray into the supernatural, like how to invade people’s dreams or force them to feel afraid. He grows up befriending mostly ghosts his age, save for one young girl who moves away and then moves back years later, only to find herself terrified by his circumstances and forced to forget him entirely. When Bod goes to school with the “normal” children (who aren’t raised by ghosts), everyone there finds him off-putting and strange, including the teachers, who are ill-equipped to handle his unique set of needs. As Bod grows older, though, he has to take care of himself more and more without relying on his family or ghost-learned skills, eventually leaving the graveyard to join the living human world.

I loved the idea of being raised by ghosts as a child, and his inability to fit in was something I strongly related to. As a shy and anxious child—diagnosed in high school as an anxiety disorder—I recall my vindictive delight reading a scene where Bod retaliates against a school bully by manipulating his levels of fear, causing the bully anxiety and terror in return. I guiltily enjoyed that the anxiety others caused me could be returned to them. The fact that Bod was able to walk among ghosts and other supernatural creatures with so little fear, but was so different from his living peers, was something I liked considering: the idea that I was simply better suited for a different, more fantastical environment.

Though I don’t know that I would diagnose my younger self with the depression I have now, I was certainly in that mental space from a young age. In that way, these books were also validating to me. Children are so often characterized as bubbly, energetic, and hyperactive; I was none of these. I preferred to stay indoors, was terrified of anyone I didn’t know and even most people I did know, and was an emotional child who cried at the slightest provocation. In these books, the characters were not required to be bubbly or happy. Coraline’s inclination to complain constantly, especially about her parents, was both entertaining and sympathetic. Her neighbors were not the cheerful, well-adjusted, middle-class suburban nuclear families I’ve seen so often, but quirky, a little macabre, and even a bit gross at times (hard to forget the image of all those rats her neighbor owns). Lemony Snicket is essentially just a constant downer, and rightfully so, writing about such tragic events; he doesn’t try to portray the Baudelaire orphans’ misfortune in a positive light, letting them survive their traumas as best as children know how to do. None of the children, despite their pessimism and acknowledgment of their problems, seemed self-pitying, as I was used to seeing in narratives featuring sadness. They were resourceful, brave, and intelligent. They did their best to overcome their obstacles, without their creators ever insinuating they were poorly behaved for not pretending to be happy, and that inspired me to do the same.

Narratives like these are important to have for children, who often struggle to put their feelings or problems into words. As a child, I couldn’t have ever communicated why I loved these books so much, but upon further introspection as an adult, I understand they provided validation and an outlet for who I was: a reflection of the monstrous aspects of me, something I could process, be okay with, and reclaim.

Checking In

Dear Monsters,

We hope this reaches you well. 

These are turbulent times we live in. We cling to hope—to family and friends; to Zoom calls; to Netflix watchalongs—and wait to see what each new day has in store for us.

When this is all over, there will be talk of a before: of a pre- and post-coronavirus world. But for the moment, we are living in the schism between. And while we are here, all we can do is wait, and help each other. And perhaps that looks different now than it did a few months ago. Perhaps it’s leaving your grandparents some groceries, rather than having them over for dinner. Perhaps it’s being on the other end of the line when your friend needs to vent, rather than meeting with them for coffee. Perhaps what we can do is limited in ways it wasn’t before, but perhaps that makes every act of care that much more meaningful. 

Whatever your world looks like right now, we here at Monstering hope that you are safe and well, and doing all you can to protect yourself and those around you.

Things have been quiet on our end, but fear not: we’re still plugging away. We are still working on our third issue, aiming for a summer release. It is our hope this will give our readers a bright spot to aim for amidst all this chaos. In the meantime, we will be getting the Monstering blog back on its feet, bringing you weekly content from our staff. We truly hope this gives you a little something to look forward to every week, something to help you keep going.

Finally, monsters, we would love to hear from you. How are you doing? What ways have you found to cope with this bewildering COVID-19 world? Is there anything you’d like to see from us, anything that would help? Reach out to us on Twitter @monsteringmag to let us know.

Take care, and look after one another,

Zara Williams
Editor-In-Chief

lazarus

on my good days, i liken myself to a water faucet:
slowly dripping out the very thing that keeps me alive
& i have died but am not dead.

//am i -
       am i here to be ruined?//

Read More

Beyond Free the Nipple

 

Instagram is home to more than a billion users worldwide. The majority of them are daily users snapping latte foam art and OOTDs (outfit of the day). However, there are subsets of the Instagram population who take their platform very seriously. For such ones, this platform can equal not only their heart and soul, but also their livelihood. These content creators thrive off Instagram for activism/advocacy, businesses both small and large, atypical work, artistic creations and journals, photography and much more.

Yet there lurks an imminent threat. The threat of it all being taken away in a matter of seconds due to misunderstanding and miscalculation… or is it? Close your eyes and imagine the life you have built around you. Imagine your life, business, job, or all the art you’ve ever created. Then imagine it being deemed inappropriate and taken away from you. 

Just. Like. That.

Censorship is defined as: suppression of speech, information, or content that is considered “harmful” or “sensitive”. Sites like Instagram use moderating technology to either delete or blur (censor) sensitive content. The problem lies in that Instagram does not specify exactly what it considers to be “inappropriate.” Instagram’s stance on nudity is defined as:

“We know that there are times when people might want to share nude images that are artistic or creative in nature, but for a variety of reasons, we don’t allow nudity on Instagram. This includes photos, videos, and some digitally-created content that show sexual intercourse, genitals, and close-ups of fully-nude buttocks. It also includes some photos of female nipples, but photos of post-mastectomy scarring and women actively breastfeeding are allowed. Nudity in photos of paintings and sculptures is OK, too.”

Unfortunately these “guidelines” do not translate well into a life lived in photos. Alex Dacy, also known as @wheelchair_rapunzel on Instagram, has noted being censored several times for rather innocuous content.

“There seems to be grossly negligent “social media censorship bias” phenomenon happening on Instagram lately. I’ve been victim of this bias several times where Instagram has removed my photos and flagged my account, limiting my account functionality when I did not violate their nudity terms. Most notably, my Kim Kardashian remake was removed. When I remade her Instagram post ... mine was deleted while hers didn’t violate Instagram’s nudity terms and was left up — that’s what set the tone for this obvious ongoing social media censorship bias.”

1.png

Dacy, like many others, has dedicated her life to disability advocacy. She has been featured on Snapchat, on Barcroft and on BBC3. Her platform is her voice as well as livelihood. She wants to show the world that disabled bodies can be sexy and self-expressive with things like her #disabledbodiesmatter campaign. 

 “I’m a 25 year old disability advocate who has Spinal Muscular Atrophy (SMA) who focuses on body positivity and disabled body representation. I post “risqué” photos like millions of other models and influencers, but mine keep getting removed. This is angering the disability and Instagram community at large due to the obvious bias that’s occurring. It reeks of discrimination, in my opinion — especially when I’m sent nude photos with bare nipples on Instagram on large accounts and those weren’t removed. This entire situation encompasses an inherent problem with our societal views and how we view disabled people…”

Alex and her followers would simply like to know why her posts are deleted whilst others “more risque” than hers are kept up. Quite frankly, I think we would all like to know. It seems rather impossible to not take this sort of self-expressive gatekeeping personally. 

2.png

Unfortunately this goes beyond artistic and sexual creative content. In the name of education and advocacy, Elizabeth Bert, Maxim model and business woman, has also faced censorship and profile elimination threats. Bert notes her mission is [“to raise awareness for invisible illnesses and disabilities— to give a voice to the voiceless”]. She has faced several surgeries and health crises. In a recent post, she attempted to educate the public on self-examinations to check for breast cancer. She reported that the post had been taken down for “nudity”.

Instagram mentions that “nudity” could possibly be removed. However, does this image constitute as nudity? Instagram’s moderating process is flawed and inconsistent. For one, there are no visible female nipples in this image and, for two, it does not take into account the actual context of this photograph. Instagram’s process fails to understand the importance of this photo and the educational purpose it promotes.

If we hypothetically entertain that it is the limited clothing or risque content of a photo that marks it for deletion, then it should prove out that fully clothed pictures of modestly dressed women should be spared from auto-censorship or deletion. This hypothesis fails in the case of Brianna, the blogger behind The Laughing Stoma. Brianna Valois, an American based in the Netherlands, is an ostomate (an ostomy bag user) who shares lifestyle posts often revolving around her ileostomy. 

“I created the account @thelaughingstoma — [and I have since connected with so many lovely ostomates from all over the world.] We exchange tips and tricks, commiserate over inevitable ostomy mishaps, and share the non-medical aspects of our lives to show that, despite having a bag, you can still live a “normal” life with very few limitations.”

Brianna fits snugly into an entire community of ostomates who share similar advocacy goals: to normalize medical devices. Consequently, these awareness photos have started being censored at an alarming rate. This sparked the #freethestoma movement- credited to Veronica Villanova (who runs @vees.ileostomy). Brianna adds that she was so “appalled by such [ludicrous] censorship” that she decided to take part in the movement herself. Sadly, she was not surprised to see that her photos, too, were slapped with the blurred content mark. 

“We shouldn’t have to feel ashamed about what we live with on a daily basis. When people consider stomas to be too graphic, and Instagram responds in their favor, it makes our efforts at spreading awareness feel futile. We work hard to fight the stigma surrounding ostomies, yet as long as stomas are seen as “offensive” and “disturbing,” the negative stereotypes will remain — and it’s absolutely damaging to the ostomy community. The censorship simply needs to stop.”

3.png

Despite repeatedly being taken down, Brianna happily reports that the censorship will “[NOT prevent me from sharing another one for this cause. In fact it motivates me even more to keep posting...]”.

Sophie Mayanne, UK-based photographer, will also not be silenced. In June 2019, the entire Facebook page for her labor of love, Behind the Scars, was permanently removed without warning. Fortunately, Behind the Scars continues to live on in its Instagram incarnation. But being that Facebook, Inc. owns Instagram, BTS’s fate is uncertain, and the account has already seen censorship and algorithm-burying tactics. Sophie’s message helps promote individuals with unique scarring or body differences. She states:

“Behind The Scars is a project where people can unapologetically be themselves, and embrace the skin they are in. [It’s a place to share your stories, encourage others to feel more confident.] It’s a place where people who don’t have scars can also learn...”

Instagram does not state scarring as an off-limits posting point; the platform actually states:  [“... photos of post-mastectomy scarring and women actively breastfeeding are allowed …”]. This is noteworthy, as BTS reports that in the past they’ve had [“various images of mastectomy scars, stretch marks and others removed..”]. So where is the consistency? BTS sometimes features individuals with self harm scars to which the photographer says:

“I understand the content can be triggering. Which is why I wanted to discuss what I had noticed on my account. Since the censorship screens have arrived – Instagram have, in fact, actually made it easier to find the content if someone is actively seeking out said pictures…”

4.png

BTS’s message is all about giving the voiceless a platform. It is understandable Instagram might want to censor triggering content like self harm scars. However, what about those who want to learn? Or those who feel alone and are seeking help or connection? There is a sense of a lost learning opportunity. 

“What I would like, is Instagram to reconsider their wording. Think about the person you are censoring, as well as the other side of the picture. Think about the opportunities to learn from people openly sharing their stories…”

5.png

My name is Julian Van Horne (@thedisabledhippie), and I am a disabled transgender advocate who primarily uses Instragram as a platform to express my mission through writing, life coaching, and modeling. While I initially began to blog about my life as a trans patient with Ehlers Danlos Syndrome, I also regularly discuss issues that people with more privileges do not consistently address. I stand up for my rights and I speak on bigotry like ableism and transphobia. 

I use my platform to educate others on the struggles I experience. However, as of recently, Instagram has shadowbanned me; my content no longer shows in hashtags. The hashtags I use are meant to reach my respective trans and disabled communities. 

Without these tags, those individuals have no idea how to reach me. Instagram has also taken to disabling my account multiple days out of the week to commenting and liking others photos, as well as to blocking my ability to promote photos. 

When you’re part of multiple minority groups, such as being trans and disabled, your prospects can seem grim. I’ve played by Instagram’s rules to get where I am now. Yet, after all the hard work I’ve done and the career I’ve built—which wouldn’t have been possible without the platform—I’m becoming invisible. My opportunities have been halted. 

I’ve been offered a chance to make something of my trials and tribulations. And Instagram is trying to take that away.

6.png

I work side-by-side with my best friend and emotional translator (as we joke) on tackling a lot of these issues at hand. As an attempt to push back, we posted this photo first on his Instagram (@carpe_that_diem), to see what would happen. There is no nudity or graphic content.

Yet, the very same day, Ariel was blocked from all hashtags.

It’s intriguing because we are fully clothed and the context of the photo discusses our difficulty finding Pride merch in the height of Pride month. It has absolutely no “inappropriate” content—whatever that means anymore.

 What I’m curious to understand is this: how does Instagram’s algorithmic moderating get so smart that it can distinguish my underwear-clad behind from that of a cis, able-bodied woman’s underwear-clad behind as “inappropriate” within minutes, yet it can’t seem to identify a child’s murdered body for several hours?

Every account that has been profiled here has touched the lives of many people who used to feel as alone as I did before discovering Instagram. I remember being very young, disabled, and trans… I used to never see individuals “like me”. I never saw representation. Now, imagine all the other younger individuals who want the same thing that I did. Except now they will be unable to find that existing community due to suppressive tactics. 

I fear we are seeing a decline in all artistic and educational content due to its “sensitivity”. Silencing and censorship tactics have been used for generations. It will seem like a slow burn, at first, in hopes that no one notices. This has historically been the case in the way that shadowbanning has affected sex educators and pole athletes. Before you know it… it’ll all be gone. 

 

ABOUT THE AUTHOR

A white non-binary individual with long brown hair smiles for a close headshot. He is wearing a light blue tye-dye shirt against a black background.

A white non-binary individual with long brown hair smiles for a close headshot. He is wearing a light blue tye-dye shirt against a black background.

Julian Van Horne is a disabled trans masc individual based in Florida and NYC. He lives with Ehlers Danlos Syndrome, a rare genetic connective tissue disorder. He spreads his advocacy work through writing, modeling, and multiple business avenues. Julian works hard to represent his respective communities, educate the public, and connect with his audience.

"I remember growing up and not seeing people who looked like me. My hope is that my story reaches the individuals who need to see it so that they can say, this could also be ME." -JVH

Review of Millicent

CW: Trauma, death.

 

Mariel Fechik’s new chapbook, Millicent, is a lyrical work which explores several central themes, including the speaker’s family (particularly the maternal side) and their Jewish identity.

I love the delicate way in which Fechik writes about the question of intergenerational trauma. “My family history is that of” is a brutally honest way to begin this chapbook, and I was entranced by its slow, melodic quality. In this opening poem, the speaker charts the maternal side of their family—their grandmother, mother, and themselves, and eventually their own daughter. It’s a good opening poem, setting up many of the central themes Fechik returns to throughout the chapbook—namely her family, and in particular her grandmother. But I am fascinated by this singular mention of her daughter: “waiting for the day / I am washed down / a drain / telling my own daughter / to quell her grief.” Even though this hypothetical daughter isn’t mentioned throughout the rest of the poems, I come back to her through each reread, wondering how she informs—and haunts—Millicent.

In comparison, the brief “My grandmother could not stop reading Holocaust books” felt more compact and hard-hitting, and “Other Side” is a touching portrait of grief— and moving past it—for the speaker’s grandmother. At first, the speaker spends “two years in limbo / the word grandmother puckered in my fist,” describing their grandmother as an “other side to birth,” but in those two years the other side too becomes the other side of birth, growth. There is something hopeful about this poem, as it positions the speaker on the road to recovery, growing past the traumas in “My family history is that of.”

In the next poem, “In September,” there is still that note of haunting, though more subtle. I especially loved these lines: “I took yellow streetlamps / into my chest, / housed their light / until it, too, flickered / out.” This imagery has so much warmth in it, but also a poignant sadness in its last parts.

Fechik’s poems are unafraid to converse with other poets throughout this chapbook, most obviously in her three “after” poems: “Lake St. Mary” (after Gianna Russ0), “Glow Worms” (after Claudia Cortese), and “The Woods” (after Mary Oliver’s “The Moths”). “The Woods” is definitely one of my favorite poems in this chapbook, although I acknowledge my bias since I’m a huge Mary Oliver fan and consider her poems almost to be a genre in themselves. Fechik captures that delicate attention and adoration of nature that makes Oliver’s poems so wonderful, but once more adds that note of haunting: “Sometimes you are in the woods and / the trees become a mosaic of winter sky / and other times there is only the ground.” In Oliver’s original poem, “The Moths,” the title insects are so vivid, so loud in the space they consume in this poem, “all around me in the forest” with wings “that burn so brightly” and sleeping in “dark halls of honey,” but in “The Woods,” only one of these insects inhabits the poem: “something fluttering against you in the dusk. It is / either grief or not. A moth towards the / light.”

Throughout this chapbook, animals in general, not just the moths, are treated with a certain delicacy. In her prose poem “Mare,” which follows the speaker’s childhood nightmare of a terrifying horse, I’m inevitably reminded of Henry Fuseli’s painting The Nightmare. In the painting, a woman lies prone on a bed underneath a demon, while an unnaturally wide-eyed horse stares out at the viewer from behind a curtain (yes, I get the nightmare/mare wordplay!). The horse in “Mare” feels even more confrontational, but for a moment, it seemingly disappears, replaced years later by “a nightmare with black birds,” only for the poem to suddenly end: “The horse kicks-” Two different animals, horses and birds, both known for their movement—a mobility which the speaker in their helpless, sleeping state does not have. I loved the sudden urgency of this poem, how well it encapsulates the fluid time and space of dreamscapes.

The writer’s exploration of animals further includes “Acadia,” a poem filled with nature imagery and probably my favorite in this chapbook, although it’s hard to pick. It has some of the most brilliant imagery in Millicent. This one focuses on the speaker’s mother, enraptured by the sight of a deer and her fawn together. I love these opening lines:

On the morning my mother saw the deer
and its fawn, her throat was an alarm

crying motherhood

It paints such an interesting visual, abstract as it is.

In comparison, “Appalachia,” while haunting, also makes me laugh a bit because of the way it plays on old adages, such as “you can lead a horse to water, but you cannot make him drink,” instead opening, “A horse leads me to water and I cling to his / sides.” In this poem, the horse does drink, though not because the speaker makes him; he “inhales long, gasping / mouthfuls of the forest’s backwash / overflowing with bottles and pine. The horse / and I lead each other home to sleep.” Growing up so close to the Appalachians, I loved how this poem felt like it was drawing me back home, but it also carries a surreal quality, as if it exists in another universe. Again, a piece of beautiful imagery:

... A rabbit
sets itself on fire before dawn, oranges and
reds blooming like spring blossoms after a
mist. …

Fechik mentions the idea of other universes multiple times throughout Millicent. “Alternate” is my favorite example of this, and it hits hard, going outside of the limited spaces of family homes and foggy mountains to something more encompassing in its trauma: “Every phone call is the news of someone’s death.” The speaker explores different possibilities in the other world she constructs, but I still find myself struggling for the meaning. What about these other worlds are so special?

Throughout reading this short and brilliant chapbook, I was fascinated by the subtle ways in which each poem connects to each other, and by Fechik’s use of different structures and forms. For example, “Acadia” feels like a journey, punchy couplets and one-liners bloated with white space, and “Making Soup” feels similar, moving gradually rightward as each successive line becomes shorter, reminiscent of a spiral on the page. Some of the poems are blockier, including a handful of prose poems. It’s been a while since I’ve read poetry split up into sections, and I really liked both the way Fechik employs this technique, and the sense of narrative it lends to her poetry.

“Gifted Bodies,” the chapbook’s closing poem, is perhaps the most innovative in structure out of all the poems Fechik has given us. It alternates between single lines and indented couplets (picture an MLA citation with generous spacing and less soullessness), something which I haven’t seen before. It reminds me of dialogue. Fechik again questions time and space, in this poem exploring how to measure time.

There are more things I want Fechik to explore in Millicent. Who was her grandmother, really? She seems like she’s left a trauma-shaped hole in the speaker’s life, but that hole could have been filled in. And Millicent’s sense of location—I am still so enchanted by her treatment of nature in “The Woods” and “Appalachia,” haunting and sad, but also adoring. The speaker really does seem like they live in a different world from the rest of us, and I need to taste more of that world. There are a number of clear motifs—horses, rain, the grandmother—but the threads are perhaps not woven as tightly as they could be, nor as unified, and I find myself grasping.

There remains an impressive honesty which colors the poet’s voice in each poem, imagery that shifts and refocuses the reader’s perspective into the brighter and newer.  Millicent is a spellbinding chapbook from Mariel Fechik, and I’m excited to see more of her work in the future.

 

Mariel Fechik is a writer and musician from Chicago. She is a poet and writes music reviews for Atwood Magazine and Third Coast Review. Her work has been nominated for Best of the Net and Bettering American Poetry, and has appeared in Hobart, Tinderbox Poetry Journal, Cream City Review, Glass: A Journal of Poetry, Rust + Moth, and others. She is the author of Millicent (Ghost City Press, 2019) and An Encyclopedia of Everything We've Touched (Ghost City Press, 2018) .

You can order Millicent here!

 

ABOUT THE AUTHOR

Photo of Caroline Mao. Front facing view, looking directly into camera. Background is a window. Author is only shown from the neck upwards, with black lipstick and blonde, pink, and purple hair.

Photo of Caroline Mao. Front facing view, looking directly into camera. Background is a window. Author is only shown from the neck upwards, with black lipstick and blonde, pink, and purple hair.

Caroline Mao is a writer and student at Mount Holyoke College who enjoys fiction of all kinds, post-19th-century art, and smiling at every dog she sees. Her Twitter is @northcarolines.

A Monster Finds Herself: how Witchcraft and Monsters came to be

I know the word “monster” well.  In middle grade and high school, I researched topics like mythology, witchcraft, and folklore. In fact, I researched them so thoroughly and so openly, that a rumor had spread that I was a witch.

I felt an odd sort of kinship with these topics. Specifically the monsters; not because I considered myself one, or even because I wanted to be one. But because I understood the feeling of it.

Middle grade was hell for me—it’s hell for everyone. Like so many other kids, I was bullied endlessly, only almost all of it had to do with my disability. It's funny how creative some kids get when they're going to do something cruel. I had a care-aide with me almost all of the time, and you would think that would deter the other kids from saying anything. But, like I said, they get creative.

The 5-minute period between classes were the easiest times for people to bully me. Six hundred kids are released from their classrooms and now have to grab their books and run across the school to the next class, swarming the corridors.  My care-aide was usually at least ten steps ahead of me, and, quite frankly, it's hard to pay attention to anything when there are a hundred conversations going on all at once. It was easy to fling the words like “cripple” out the sides of mouths.

Honestly, these cruelties were easy to boil down to the insults of perpetually angry, hormonal teenagers. But still, the point was made: I was not like the others.

You expect it from the kids. It was the most surprising when it came from the adults. It was the adults in school who spread the rumor that I was a witch, concerned that I was using the fantastical or the occult to cope with my disability. But that’s where their thinking was flawed.

I was diagnosed with Spinal Muscular Atrophy type 2, at 11 months old. I was driving an electric wheelchair at 18 months old. I have never needed to cope with my disability. Yes, my body will progressively get weaker. Yes, it can get a bit frustrating. But I've never had to cope with my SMA. It is as much a part of me as my skin or my lungs are.

So their assumptions of me trying to cope with my inability to do things by apparently submerging myself in a fantasy world were incredibly misguided. If they had asked then I could have explained: Yes, wicca, witchcraft and new age is very interesting to me. No, it is not what they think it is. And, as for my interest in mythology, I just like the stories. Is there something so wrong in that?

I learned to listen to the way they said “witch,” to really listen. Hushed undertones of terror, a little bit of sadness. It's the same way people say “monster.” It's the same way people say “disabled.”

I have a poem in Witchcraft and Monsters comparing myself to Medusa. Specifically regarding how people try not to look at us:

People refuse to look me in the eyes.

Like somehow,
Looking directly at my wheelchair,
Is going to turn them into stone.

I later suggest that when people do look at me, they often react as though they are going to catch my disability—a ridiculous impossibility, of course. Such behavior is hurtful, and further drives home that point my peers made back in middle school: I am not like the others.

What people don't always understand is that the term monster has multiple definitions. My favorite one is simply otherness. A monster could just mean something different. Something that people just aren't used to seeing.

I knew Monstering magazine when it was in its very early stages. So, I took part in being a student during one of their workshops, Hollows Shout the Mountain Down, a workshop specifically for writers with disabilities. Monstering was such an amazing concept, that I knew that the workshop would be well worth it. And, well… I needed the incentive to actually try to write about myself. It was therapeutic and it allowed me to create something beautiful.

What is now Witchcraft and Monsters was created during that workshop. It allowed me to talk about myself in a way where I could still connect to the fantastical and the monstrous, all while the writing would stay beautiful and lyrical.

Maybe my poetry collection Witchcraft and Monsters is actually my spell book? Or maybe it's just your reminder to look for magic in yourself?

Witchcraft and Monsters is my heart laid out before you. It is my love letter to my humanity, as well as my divinity. My beauty and my monstrosity. My otherness, and yours. It is my demand for people to look, to actually see me. Because I am no longer small. Because I am no longer hiding.

 

ABOUT THE AUTHOR

Blonde girl with glasses, and facial piercings looking down at a rose. A slight smile on her face.

Blonde girl with glasses, and facial piercings looking down at a rose. A slight smile on her face.

Kala is an author living in Alberta, Canada. She lives with a physical disability and is confined to a wheelchair. She's also an occasional artist, and Halloween is her favorite holiday. She likes tattoos and chocolate, and most movies directed by Tim Burton.

Please click here if you would like to purchase Kala’s debut poetry collection, Witchcraft and Monsters.

Ambulatory: How the Little Mermaid Shaped My Self-Image with Cerebral Palsy

CW: Ableism, body horror, death

Like many other little girls born in 1989, the year that The Little Mermaid was released, I was obsessed with Ariel. I never saw the movie in the theater but watched the VHS obsessively starting when I was two or three. At that age, I was far too young to understand the romance between her and human Prince Eric. I identified with her fun-loving curiosity, musicality, and independence. But long before I knew what a metaphor was, I also unconsciously related her desire for legs to my cerebral palsy, which affects my balance, gait, and coordination. "She has feet!" I told my babysitter, thinking hazily of my own goal of one day walking independently.

However, unlike Ariel, I didn't really want to change anything about myself. I imagined that Ariel could stay in the sea with me and be my friend. When my aunt and uncle bought me a Prince Eric doll to go with Ariel, I was inexplicably appalled. My mom understood this implicitly when she said to me, "Ariel's our friend, right?" My view of Ariel had shifted subtly. Instead of relating to her desire for legs, I now wanted to stop the story before Ariel could change herself.

At the time, I had an Ariel doll that I brought everywhere. She had a removable, green tail that I could pull over her legs, transforming her from a mermaid to a human and back. One day, I accidentally knocked Ariel's leg out of its socket. Spooked, I immediately threw the doll and all its accessories into the trash. My mom retrieved it from the trash and explained to me that Ariel was not broken.

In 2009, when I told my college roommate this story, she joked, "You threw away a doll for being disabled!"

In a complicated way, dolls can reflect or reinforce whom society considers attractive or even "normal." All children should have access to dolls and characters that reflect their identities, such as race, disability, and body type. I received catalogs offering to custom-make dolls resembling individual children but found it off-putting and creepy.

I noticed that most characters were white, like me, but almost none were disabled. As an adult, I discovered that disabled authors of color are doubly marginalized, even in the disability community, due to this lack of representation. I think that some of us as disabled children identified primarily with our race or gender but not with our disability. Or we unconsciously found metaphors for disability, like I did with the little mermaid. Although I never thought that anything was "wrong" with me, the eerie feeling that something was wrong with Ariel had been unshakable.

I wasn't the only disabled student in my school, but even in preschool I began to realize that I was different from most of the other children. My desire to stay under the sea with Ariel was inseparable from the idyll of my parents' house and the radical self-acceptance that they helped teach me. Ariel moves from one world to another, which is how I often felt navigating between disabled and non-disabled people.

Today, due partly to countless hours of physical therapy, including therapeutic horseback riding, and exercising at home with my parents as a child, I'm ambulatory. I can walk semi-independently, either with crutches or a walker. My dad used to say that someday I would reach what he called "step three" and be "a community walker." Despite his good intentions, we learned and realized that this wasn't a realistic goal. Although I can get around semi-independently, there are certain places, like the subway, where I'll travel with family and close friends only, never alone. My gait will always be distinctive, and I'll always need some type of assistive device. My family and I never considered total assimilation, or eradicating any trace of my disability, a healthy goal. It's part of my identity and always will be. This is why I find popular narratives of curing or "overcoming" disability both inaccurate and insulting.

Despite my strong sense of self, as an insecure teenager, I sometimes used to wonder what a non-disabled version of myself would look like: more developed muscles, straight posture and gait. Now I realize that there's no ideal version of anyone. This is how I'm supposed to be. Why disavow or wish away the source of my art and some of my most fascinating, unique experiences and relationships?

In high school, I revisited the story of "The Little Mermaid." I read Hans Christian Andersen's original fairy tale and realized that it was much darker and more visceral than the sanitized Disney version. The nameless mermaid not only loses her voice; she also literally has her tongue cut out. Her new feet bleed each time she takes a step. Whether you interpret this as representing the physical pain of menstruation or the way that some people sacrifice and silence parts of themselves for their partners, the symbolism is rich. Imagine: all that for a man who doesn't even like her back! At the time, I vowed I'd never change for a man. I often made pronouncements like this.

When I was nineteen and a sophomore at Stonehill College, I took a creative writing class and used Ariel as a metaphor in my story "Categories," eventually published in Deaf Poets Society. As I've become more involved in the disability community, both in-person and online, I learned that I wasn't the only person to use mermaids as a symbol for disability. Disabled artist and activist Annie Segarra recently used the amphibious nature of mermaids as a metaphor for being an ambulatory wheelchair user, sometimes walking and sometimes needing assistive devices.

The little mermaid's self-abnegation—her attempt to destroy what makes her unique—will always disturb me. In the original story, the mermaid fails: instead of staying human and gaining an immortal soul, she dies and turns into sea foam. The little mermaid briefly succeeded at assimilation—at becoming something she was not. But the cost was her voice and her life.

 

ABOUT THE AUTHOR

GRACE LAPOINTE is a freelance contributor at Book Riot. Her fiction has been published in Kaleidoscope, Deaf Poets Society, and Mobius: The Journal of Social Change. Her essays have appeared in Wordgathering, as part of Grub Street's "Why I Write" series, in The Body Is Not An Apology, and elsewhere.

A Borderline's Survival Kit

CW: Ableism, addiction, drugs, self-harm, self-hatred

 

Ironically, if you want to stay alive, sometimes you have to jump off the edge.

You need something to believe in, but you're not left with many choices. When the only options are a rusting razor, a bottle of rum and three packs of cigarettes, another stranger to have reckless sex with, and mind-altering medications that make you drug-dependent, which one do you pick?

I picked them all, just like some people jump from one psychiatrist to another, trying as many brands of antidepressants as their bodies can take, in the hopes of finding the one that suits them best. Those were the worst five months of my life.

It started with self-harm. Non-suicidal self-injury was what mental health experts called it. When people see my right arm, a canvas of badly-etched scars, they jump to the conclusion that it was from a suicide attempt, but I did not try to end my life. It was always hard to explain with reasons they didn't want to hear in the first place. To me, self-harm served as a frail attempt to convert emotional pain into physical pain, something I know I can tolerate better. To others, self-harm is a performance act, a sad call for attention. I grew tired of explaining myself and realized that alcohol and nicotine were easier to hide, except from my roommate. Drinking and smoking became a nightly regimen. I had to get myself drunk just to get through another night in that long stretch of depression.

Somewhere in between being sober and staying drunk, I did try to get better, but the first time I consulted a psychiatrist did not go as well as I hoped. I was misdiagnosed with major depressive disorder. The rivotil worked for a few months or so, but then it lost effect. It was not enough to help me get through. I stopped attending therapy when I decided to give up on myself. Not long after, I lost my virginity to a boy I met online. There were 12 more encounters in the span of three months. I was in the peak of mania, drowning myself in hypersexuality.

It was not the sex nor the vices that got me hooked. It was the feeling of destroying myself slowly. Every time, I would end up feeling emptier than before, the temporary feeling of being visible and wanted fading too quickly. There was just something so addicting about hurting myself; it felt like the only thing I was good at. 

My mother knew nothing about my self-destructive behavior, nothing but the scars, but she encouraged me to see another psychiatrist. It was then that I was treated for bipolar disorder and BPD. I have been making progress, but to this day, I remain dependent on lamotrigine and quetiapine. When I miss a dose, I suffer from too many side-effects: I immediately lose control of my emotions, and intrusive thoughts impair my judgment. 

I cannot stress enough how much I hate having to live with bipolar and BPD. People talk about being emotionally unstable, but my body aches with every switch of emotion. I lost control over my actions, and because of this, I lost respect for myself. There were too many bruises and regrets.

How badly did I want to stay alive? I did not feel alive, but I was breathing. In those moments, that seemed more than enough.

My demons clawed their way out of my worldly vessel, wanting release, and I let them. I still have the scars from their escape. The scratches inside my throat sometimes still sting. 

The problem with struggling with invisible illness is that people often don't believe what they cannot see. It does not help that many people with BPD have mastered the art of veiling your symptoms with faux normalcy. The curse of being blessed with manipulative tendencies is that you can manipulate people into thinking you are well, when you are actually far from being so. 

People only see addiction exactly as it is, nothing more. They don't bother understanding the reasons behind it. The truth is that only when you die do people feel shame. They only pretend to care when it's too late. They call us monsters for our struggle to stay sane and intact, for plunging into vices just to make one more day bearable to live, but who is truly worse? I would rather be a monster who embraces her disabilities than one who does not realize her own monstrosity. 

 

About the Author

ELIZABETH RUTH DEYRO is in her final semester at the University of the Philippines Los Baños, completing her Bachelor’s degree in Communication Arts. She majors in writing, specializing in nonfiction and critical writing. She is a prose editor for Culaccino Magazine and Minute Magazine. She writes for BioLiterary and The Cerurove, and reads for Monstering and The Mystic Blue Review. She also serves as the Social Media Head of the Youth for Mental Health Coalition, Inc.

words as weapons (sharper than knives)

CW: Ableism, oppression

 

disappointed. disinterested. disengaged. 
distrust. discarded. disgrace.

the words above all have a negative connotation: they evoke bad feelings & emotions—some more than others—but perhaps i have omitted the worst. perhaps you don't think it's the worst. but then again, you're probably not disabled.

what does that word mean to you? i imagine it's either interchangeable for sympathy &/or empathy, right? either a turn of the head or a knowing glance. a contest to distinguish between the scrounger or the sufferer. 

it is just a prefix, i hear you say. but does that justify alienation? the letters mean nothing on their own, but we as humans add weight to them.

perhaps i am not being clear here. what i mean is, whether people self-identify as disabled or whether that label is stuck upon them, from that moment on, they are disposable. disfigured. bad. bad. bad. they are a stereotype, a predefined definition. a statistic. an anomaly. an excuse to be given. people shy away from the word, cringe at it, make a big deal about discussing it. they don't like to hear about it, because of course disability wouldn't exist in a perfect world.

these are not my views, & perhaps not yours, but the evidence swings the other way: history has a habit of repeating itself in terms of oppression against minorities. disabled individuals—thought to be subhuman were targeted in the holocaust & are targeted in things like genetic cleansing, even today. foetuses are being aborted at the mere suggestion of some sort of impairment.

yes, having a disability is hard. but that does not mean that abled people should make it harder for us to deal with and find ourselves in this strange world of feelings & emotions & an affiliation towards categories & labels. our minds are stronger than the eyes that look down on us. please let us portray that.

i am disinterested in what you think of me, dissatisfied with what you see me to be. i am disabled, yes—but that does not mean i can be discounted or discredited. all that means is that i am differently abled—& that really is not as bad as you believe.

 
 

About the Author

L.MUNIR is a law student from the united kingdom. when not studying, reading, writing or being entirely monstrous, they can be found napping, advocating & petting cute cats—though as of yet—due to technological limitations—not all at the same time.
 

Hiraeth

CW: Abuse, body horror

 

I am running down claustrophobic corridors, all flickering shadows, gunmetal grey sharp-angled walls and low ceilings. The walls are too close. The corridor seems to stretch on forever. I'm looking for my mother's fetus—I know, in the way that one knows things in dreams, that it is here. I know intuitively I'm not on Earth—I'm aboard the spaceship that took my mother's child while she was pregnant and placed me in her womb. I startle awake from the dream I've experienced several times since I was little. Each time it's the same warren of hallways and the same sense of overwhelming panic that I will fail to recover my mother's real child. 

Growing up I was told that I was just like the other kids. I just had ADD and a bit of trouble with reading, some handwriting issues, but nothing big. I knew that was a lie just like I knew I wasn't human. I felt it deep in my bones. As a child I found the world chaotic and confusing. Meandering through the library looking for science fiction, fantasy, and monster tales was peaceful and comforting. Through my reading I began to stockpile words and ideas that matched my experiences and dreams. I was slowly building a language to communicate. I was ten when I found a word that adequately captured the feel of the dream: changeling. I first learned about changelings in the book Moorchild. A changeling, in this case, meant a being that was part fairy/part human, cursed to never truly fit in either world because they weren't fully one thing or the other. Within Moorchild I saw a glimmer of my dream on the page for the first time. That thrill of seeing a secret part of myself written casually on the page shocked me and deeply endeared me to the story.

I was ten when I first read Moorchild. At the time it felt like there was a larger significance than I could articulate around the shift from single- to double-digit numbers. That year I stopped seeing one therapist (motor and math skills), started seeing a psychotherapist for the first time, and was diagnosed with three anxiety disorders. It was also the year I went on my first long camping trip during which I likely suffered a second concussion that, like the first, wasn't properly treated. I didn't tell J.—the person who organized the trip and whom I had been seeing for several years to address a variety of issues around motor and math skills—I just walked it off. I hadn't yet realized that my pain response was abnormal. Ten was also a pivotal year, a junction in time I can point to as the beginning of my disintegration from my family. At the time, I didn't know what was to come, but little warning signs began to appear. Suffice to say ten was a momentous year for my psyche, and when I came across Moorchild, I devoured it. I read and reread that book until it appeared to have been mauled by a small inquisitive creature. The book sparked a curiosity about changelings, and my research into changelings intensified my fascination with monsters and the supernatural. 

From a young age, I knew I wasn't like the others and the stress of trying to pass caused significant damage that I'm still undoing. I turned to research as a way to try and make sense of the world. I suspect that early in life I picked up on the fact that I wasn't just quirky—my brain was wired differently from other people. Other kids had after-school events; I mostly had tutors and doctors. Other kids didn't go to the hospital twice yearly (between the ages of 4 and 8) and yearly (between the ages of 9 and 18) for testing. Ultimately I reached the conclusion that my brain wasn't "normal." I resented the lies from my caregivers that everything was fine. I understand the impulse to lie to a disabled child, to want to protect them from the seriousness of their diagnosis. In my parents' case they were motivated by a desire to keep me from sliding into hopelessness. In their minds, if I knew what was wrong with my brain I wouldn't try, but if I thought I was normal I would maintain a good work ethic. I'm not sure where they got that idea, but it didn't work—I grew up a perfectionist, convinced that I was a monster. It makes sense that a monster would seek out others like them and, finding none in meatspace, I instead turned to fiction and myth. 

Monsters are built from cultural anxieties and fears. Changelings were born from anxiety around the Other and disability/disease that resists explanation. The changeling myth helped provide an explanation for a range of life occurrences such as sudden death or disappearance, mysterious illness, and eccentric and bizarre behavior. The term changeling was used to describe an individual, usually a child, who demonstrated notable sudden shifts in behavior and/or appearance. A changeling was a substitute for an infant, child, or adult who the fairies had abducted. The substitute left by the fairies might be a sickly fairy child, an older member of the fairy tribe, or an animated log that manifests as a human that is slowly dying. The changeling was characterized by a number of behaviors (such as developmental delays) and certain physical appearances (such as stunted bodies).* Changelings were similar to fairy abductions—the mysterious disappearances of children and adults attributed to fairies, though in the case of fairy abductions, nothing remained. The person simply disappeared, seldom to return and, if returned, markedly and forever changed by their time amongst the faye. The idea of a shadowy Other on the outskirts of civilization has haunted our collective unconsciousness for millennia and is one of humanity's oldest fears. The changeling myth tapped into the fear that a parent can do everything possible to protect their child, yet still lose them to a shadowy Other on the outskirts of civilization. The changeling also tapped into the fear of the imposter. Whether permanent (like the vampire) or temporary (like a possession), it pokes at the deep lizard brain fear of the Other as well as the anxiety that the Other can look identical to your child or kin. It can pass for human. Monsters are frightening enough when they look monstrous (c.f., Frankenstein), but when they look human, that amplifies and warps the terror.

The changeling myth identified the disabled as not human and thus made it acceptable to kill the child: 
"A number of people...believed their loved ones—either adults or children—had been transformed into alien and frightening beings. Unconsciously externalizing a felt evil, they sought to determine its source, and, if possible, to exorcize it. If someone became a changeling, it was not neglect, disease, or a taint in the blood line that was responsible. And if the affected creature died, either naturally or as a result of changeling tests*, it had not been meant to live. Besides, the real person had been taken by the fairies. She or he was elsewhere" (Silver, 2000, 65).

Most changeling incidents involved children, i.e., those perceived as dependent or subordinate in the social hierarchy: "The belief in supernatural etiology and intervention permits the more dominant group—here adults—to reject an imperfect infant ('It's the fairies' child, not ours') and allows as well for denial ('We didn't do anything; it was born normal')" (Silver, 2000, 66).

It has been speculated that the story of changelings was a way to explain over 100 diseases and disorders such as PKU, autism, and progeria as well as explain the signs of neglect. While changelings have largely fallen out of the cultural lexicon—newspapers and other news sources no longer report changeling cases, as was the case in Victorian times—, but the anxiety around the Other, and around disability, is still very much with us. 

Monsters provide a convenient holding place for the things we don't want to look at or consider. Culturally, we still hold a lot of anxiety around disability. Certain fears—the Other, disease/disability that resist explanation—are deeply embedded in the human psyche. So while the fear and anxiety might change shape and name, its rudimentary form stays the same. The monster adapts to changing cultural norms and values holding ancient fears dressed in conventional attire. Thus we see the changeling myth in one of the earliest stories of space travel (The Man in the Moone) and in how many refer to autism. Many of the changeling references in regards to autism are on a science fiction angle, i.e., phrases like "children from another planet" or "living with a martian." What is interesting to note is that the language surrounding changelings is eerily similar to the language surrounding autism and vaccines. In both cases the narrative goes: I had a good child, the good child was taken, in its place is a bad and/or sickly child, I want my good child back.**
 
When I was 18 I gained access to my medical records and saw the initials NLD for the first time, along with several other diagnoses. I was both relieved and enraged that I had been right all along. I was not normal, but disabled, and notably disabled in some ways—the current diagnosis is autism, severe SPD, dyslexia, dysgraphia, and dyscalculia. I suspect that the feeling of otherness born from a neurodiverse autistic brain led me to feel that I wasn't my mother's child. My mother's child was elsewhere, I surmised, in outer space. This makes sense, considering that I turned to science fiction and comics at an early age as a way of coping with feeling so culturally out of place. Outer space equaled safety and, in many respects, felt like where I truly belonged. It would make sense, then, that if I belonged there, that would be where the real child was. These days I now jokingly refer to myself as an alien changeling—melding science fiction with the changeling myth. Admittedly, however, I have largely accepted the fact that I will likely never leave this planet. 

 
 

Footnotes

*Typical characterizations of the changeling included unresponsiveness, resistance to physical affection, unexplained crying, atypical social development, often physically ugly (large heads, stunted bodies, old distorted face, dark or sallow skin), developmental delays in walking or speaking (though some showed exceptional ability in a specific area), gluttonous appetites, and disruptive behavior. Some were active while others were immobile and doll-like losing any semblance of life over time. Prompt baptism was considered an excellent preventive but if the child (or in some cases the adult) had already been changed there were various tests or exorcisms to try and return the child/adult. Infants were almost never returned, but there was the possibility that adults might be returned (though even if returned they were not quite right having spent some time with the fairies). The tests or exorcism ranged from mild (such as tricking the changeling into betraying its nonhuman nature by doing something preposterous before your eyes or having the changed person touched or sprinkled with holy water by a priest or minister) to severe (leaving the child outdoors such as at the foot of a hill in particular those thought to be inhabited by fairies or by rivers, flogging, having bits or hunks of iron thrown at the afflicted individual, branding with fire, abandoning it in a ditch or on a grave, and shoveling which entailed placing the suspect on a hot shovel or over a hearth fire with instructions to go up the chimney). The idea was that exposing the changeling to peril of life would compel the fairies to return the "real" person, i.e., rather than see their own offspring suffer, the fairies would intervene and bring back the human child. Exorcisms would have been done by a priest or minister, the family/local community, and/or a fairy doctor who, amongst other things, treated changelings. 

**One autism parent memoir considered a "classic"—The Siege by Clara Claiborne Park—uses the "autism as child-thief" metaphor at length, referring to the birth of an autistic child as akin to myths of fairies stealing babies in the night, only to replace them with mimicked shells of their former selves (C. Park). To quote Dr. Mitzi Waltz, a lecturer in Autism Studies at the University of Birmingham, "This metaphor is redolent of changeling myths, which may represent the oldest legends concerning autism as such. In these stories, the changeling must be killed, beaten, or abandoned, or the correct spell must be said, to force the return of the 'real' child it replaced" (Waltz). Unfortunately, the acts of killing, beating, abandoning and even searching desperately for the correct "spell" to "cure" autism and thus return the hypothetical normal child are all too common amongst parents of autistic children, as they continue to play out the only autism paradigm most have ever known: a pyrrhic quest for a non-existent cure. This topic deserves further elaboration: what effect does the concept of cure have on parents who are reluctant to face the reality that the child born to them is different from the child they desired? (Ne'eman, 2007, The Empty Fortress: The Fallacy of the Missing Self section, para. 3, https://case.edu/affil/sce/Texts_2007/Ne'eman.html).

 

About the Author

JACK is a genderqueer autodidact and HSP autistic with severe SPD with interests in developmental psychology, anthropology and film theory. They live in Seattle with their husband and a vocal black cat and work as a medical massage therapist. For more of their writing please visit tk746.wordpress.com.

 

Works Cited

Silver, C. B. (2000). Strange and Secret Peoples: Fairies and Victorian Consciousness. Oxford University Press. 

Eloise, J. MG. (1996). The Moorchild. Simon & Schuster, Inc. 

Ne'eman, A. (2007). "Dueling Narratives: Neurotypical and Autistic Perspectives About the Autism Spectrum." Atlanta, 9, 11.

Suggested Reading

http://www.pitt.edu/~dash/britchange.html
https://www.amazon.com/Burning-Bridget-Cleary-True-Story/dp/0141002026
https://www.youtube.com/watch?v=srul5Xd2kT4 ("Designing the Other: Aliens on Film Chez Lindsay")
http://www.englishwithtuttle.com/uploads/3/0/2/6/30266519/cohen_monster_culture__seven_theses__3-20.pdf
https://roachpatrol.tumblr.com/post/161863637967/heres-a-story-about-changelings-mary-was-a

An Open Letter to Neurotypicals

CW: Suicide

 

Don't be scared of the 's' word.

When I first thought to write about ableism, I thought this should be easy. Ableism is common, unchallenged, so I did not feel pressured to dissect it, to discuss its true form—but that's exactly why I struggled. There's so much of it, too much—and it ranges from 'obvious' to 'perhaps that was not the intention, but it can be considered as ableist'. I didn't know where to begin.

My reluctance to begin changed all but a few weeks ago, when our heavily ableist worldview led to the worst outcome possible—suicide. News regarding Chester Bennington's death hit both the music world and the general public like a fully-loaded freight train, and more painful than his death is the realisation that suicide will feel like the only option to so many right now, and in all the days to come.

Neurotypical ableism is probably the biggest killer of our generation. With the event of Chester's suicide, the usual posts did the rounds on social media—suicide prevention hotlines & such—but is that really enough? Suicidal people know that help is out there; they just feel unworthy of it. A phone number, offset by a string of emojis, feels quite distant from the whirlwind of thoughts in one's head. Mentally ill people have a special magical power that can help them heal—talking. No, really—it's so rare & powerful that it's made out to be this incredibly inconvenient, cringe-worthy thing. And, believe it or not, that is ableism. It may not be intentional, but it affects so many people. It's already so hard to open up, to vocalise your weaknesses—and society makes it even harder by purposely avoiding it.

Yeah, it's awkward. So what? Funerals are a tad more tricky to deal with. What you end up with is a vicious cycle of people silently struggling, and suddenly they aren't there anymore, and the pain is passed on, to all sorts of different people. But grief isn't diluted when passed around. It gets stronger and more destructive and flooded by tears.

There is nothing worse than losing someone to silence, especially if you are the source. People often have a hard time of initiating personal conversation, so if you know someone who struggles, start the conversation. Invite them for coffee (wait, don't do that—coffee is yucky). Just invite them. Make an effort to talk about and through the hard things. Your efforts may be rejected, especially initially—and if the person is not a threat to themselves or others, then you should respect that. It takes time to build up trust, especially when people may have never experienced it before.

Suicide is not failure. Not talking about it is.

Opening up is not a weakness. Ignorance is.

Offering support is not ableism. Criticising is.

There needs to be more understanding. If some neurotypical individuals claim 'fidget spinners' to be a toy, a trend, it's not surprising that they think opening up should be left for drunks or attention-seekers. This is the main reason why cries for help are much quieter than cries of laughter. Pain is a competition, is compared to the pain of others ('Well, it can't be that bad/could always be worse/you have all this; yet you're still ungrateful...').

What people need to understand is this: We are not here to make anyone comfortable. You are not here to make anyone comfortable. If we want to scream our traumas, we will.

In short, don't judge pain you haven't felt. Consider yourself lucky. We only know how to tell stories with stutters and sleepless nights. Hearts worn on sleeves are easier to lose, so instead of just having faith that there will be a happy ending, help it happen. Just imagine how beautiful that will feel.

 
 

About the Author

L.MUNIR is a law student from the united kingdom. when not studying, reading, writing or being entirely monstrous, they can be found napping, advocating & petting cute cats—though as of yet—due to technological limitations—not all at the same time.

IN/VISIBILITY

CW: Ableism

 


Today I am window shopping online for collapsible canes and considering the abled gaze. I am thinking about what colour cane would go best with my wardrobe and how much money I can justify spending on floral print; and I am thinking about the ways in which we, as disabled people, often package ourselves in order to slide as neatly as possible through the bars of abled discomfort.

I am considering how, up until now, I have mostly been able—despite my ambivalence—to "fit" in the box of 'invisible disability'. I am considering what that box looks like—does it posit a separate experience of disability? If so, separate from what? 'Visible disability'? ‘Disability’ in its entirety?

I am thinking about how my disabilities are contingent, their in/visibility suspended (for the present) in the eye of the beholder. Do you recognise my panic attacks as symptoms? When you see me limping, am I injured or crippled?

One fairly typical surface assumption regarding the differentiation of 'invisible' and 'visible' aligns with the separation of 'mental' and 'physical' disability. As part of my work in disability activism, I am constantly running up against hesitation to label mental illness as 'disability', or ignorance of the fact that mental illness even qualifies as disability. The phrasing of 'invisible disability', in this context, suggests a wish to challenge this hesitation, to pick apart the assumption that something existing (supposedly) on a purely mental plane—and therefore (supposedly) unseen—fails to "count".

I applaud the motive, but question its conclusions. The category of 'disability' is opened up, even as the lines between 'mental' and 'physical' are redrawn in ways that prove frequently unhelpful for many disabled people. Disabilities that fall most obviously between the categories of 'mental illness' and 'physical disability' by various criteria—developmental disabilities, eating disorders, some forms of chronic pain—trouble the twin distinctions from the start, while the invisible aspects of physical disability and the visible aspects of mental illness fall between the cracks.

If my mental illness/es and neurodivergence/s are unseen, who is (not) doing the seeing? Panic attacks, meltdowns, tics, stims, flashbacks, atypical verbalisations, involuntary movements, scars. I see the signs of people like me everywhere, and I watch others ignore or explain them away until they can't anymore—at which point their response becomes pitying, or disgusted, fascinated, fearful, a combination of the above.

Meanwhile, what is 'visible' of other disabilities—most obviously those that require mobility aids—is never more than surface. People who use mobility aids are reduced to their mobility aids. If I use a cane to walk, you see (some of) my mobility impairment, which for me is one of the least troublesome elements of my fibromyalgia—you don't see my pain or my fatigue, you don't see my brain fog, you don't see my memory impairment. The invisible boxes society draws reveal their delineations in the vitriol aimed at wheelchair users seen standing up in public—as though you may only be able to walk or not walk, stand or not stand, with no 'fluid' or 'in-between' status in existence. I will consent to seeing you one way or the other, but not both.

By whose judgement are 'visible' disabilities 'seen', and 'invisible' disabilities 'unseen'?

Last month I moved countries, which involved the kind of high-level executive and physical function that wipes me out for a long, long time afterwards. I struggled to pull my suitcase up the steps onto the train platform and an Italian lady, standing at the top, told me there was a lift. I told her it needed a radar key, which she didn't seem to understand, and I mentioned in passing that, while I'm disabled, I don't have a key, and she interrupted me with "come?"—"how?", or "what?", looking me up and down. I told her I had an autoimmune disease that affects my muscles. She told me my muscles looked fine when I was dragging that suitcase up the steps.

Today I am thinking about the pain and weakness in my legs and feet when I have to stand still for more than a minute, and about how last night I managed to jog for three straight minutes, and about what someone who sees me jogging one day and using a cane the next will think. About whether they will accept that what I am capable of is not static—whether they will consent to see me both ways, or will simply assume I'm faking somehow.

I am considering the discomfort of non-disabled people when faced with visual reminders of disability, and wondering whether my awareness of that discomfort will outweigh the pain in my feet, or whether the pain in my feet will feel more valid if it is made visible through mobility aids—even if visibility means exchanging disbelief for disgust.

I am considering how wheelchair users are viewed as a universal default for "disabled", and how some 'invisibly disabled' people take that to mean that wheelchair users have it somehow easier, or that their needs are being adequately catered to.

That visibility is unequivocally good.

That any of us are really, genuinely, being 'seen'.

 
Audio Block
Double-click here to upload or link to a .mp3. Learn more
 

About the Author

EMRYS TRAVIS is a disabled, non-binary writer and activist trying to queer a degree in Modern & Medieval Languages at the University of Cambridge as much as possible. They also write with the Italian feminist collective F Come and work with the UK organisation Action for Trans Health.

Monstering 101

CW: Ableism, body horror

 

A Recipe, and an Explanation

Monsters aren't born. They're formed—
gestating inside their self-made wombs
until they spring forth the damaged product
of genes and germs. But they're never
their own creators. Some are born helpless, 
whimpering others enraged adults,
ripped from their own cracked skulls: Athena-
raw, extracted from a She-Zeus trying
to suppress herself.

I am womb-born, Athena-raw—
and so is my Monster.

My Monster hatched early. I was sick
before doctors would admit, standing naked
burning in my own infected juices.
I proved them wrong: pneumonic, contagious,
coughing infection, pissing bloody bacteria—

My Monster teethed on their dismissals.

Adolescents are Monstering contradictions,
seeking acceptance they'll never find—teased,
bullied, told by bigger Monsters to play
nice. Be a good girl. Be womanly. Good girls
like boys, not curves or cleavage. Sour tongues
seek to define us before we can ourselves.
Adolescent Monsters rarely find comfort inside
their own bodies.

A Monster denied—we sharpen our claws
on society's norms.

My grown-up Monster clenches her fists
until her talons draw blood. She reaches for those
who misprescribed, misdescribed—
they're always right, Monsters are always wrong.

Fork-tongued doctors digest and regurgitate
their own lies until they believe them. You're
sick, but I can no longer treat you. Acid double-
talk will get you bitten. Say it twice and you'll
need stitches.

Please give me a reason to be monstrous.

My Monster howls grief and pain, but few try
to hear her. Those few, family: child Monsters
licking their own pain away—a forever love,
whose presence says I no longer care what others think.
My Monster loves hers. I love her. We howl
together, hold each other upright, bandage
each other's wounds.

Monstering broth at its most delicious:
Medical and societal ignorance didn't tip
the balance. It shattered our Monsterly scales,
ruining prospects of equilibrium. I quiver with
fear, my Monster shakes with rage, our im-
balance now as physical as it is mental.
But that doesn't make the doctors right.
I wobble on my cane while my Monster turns
dystonic pirouettes, trembling limbs, curled
feet and hands, numb fingers and toes—
we shake from our soul outward, but love,
rage, and my Monster keep me fighting.

We're done dulling our claws on you.
Find someone else's recipe to ruin.

 
 

About the Author

JEANNE G'FELLERS is a multi-published, award-winning author of LGBT+ Science Fiction, a mother, and a part-time poet who has known her Monster since their simultaneous birth in the very late 1960s. Jeanne and her Monster waded through the gene pool/ cesspool together and never quite shook off the effects. They live with immune system issues and autoimmune conundrums which are slowly taking their physical toll. Their feet curl, their hands shake, and they occasionally lose their balance. Their words also sometimes slur, but they keep going, because the alternative isn't acceptable.

Writing, for both Jeanne and her Monster, has become a crucial means of self-expression.

They call the Appalachian foothills of Tennessee home and live happily with Jeanne's much-loved Anna, her quiet, Monster-soothing, partner-turned-spouse of fifteen years. Jeanne and Anna's children are grown, their cats number five, and that, as someone wisely said, is that.

Inhuman Empathy

When I googled “human empathy”, one of the first results was from Psychology Today—“Human Empathy: an Essential Component for Human Society”. Have you ever let yourself feel the hatred in the world, it asks? Turned off all the noise, gone to a quiet place, and contemplated how many people hate other people and the ways they express that hate?

People generally give two different definitions of “empathy”. Cognitive empathy is the ability to deduce what others are thinking, to know their mental state, to understand their perspective and thought processes. Affective empathy, or emotional empathy, is about feeling what other people feel. Emotional contagion. An infection, apparently, that is—that must be—a part of the human condition.

Immunity is unthinkable. Immunity is monstrous.

The steps that autistic and other neurodivergent activism takes towards the understanding and acceptance of different experiences of empathy are too often hampered by our feet, tangled in threads of respectability. We feel the need to insist that, whatever difference or deficit may exist in our cognitive empathy abilities, our affective ability remains collectively intact, normal, normative—or that it exceeds normativity, spilling over with emotional contagion. We might not understand what you’re thinking, you see, and that’s alright, because we all feel what you feel. We feel it to excess. We drip with humanity.

When personal experience becomes harmfully generalised—when our aim is to reassure rather than to disrupt, to widen the cracks humanity can slip through with tools rather than breaking down its barriers with sledgehammers—we leave people stuck outside, abandoning them to the realm of the monstrous.

I had to ask a friend—also autistic—to explain how, in their own terms, it feels to experience affective empathy. They described joy when friends are happy, sadness when friends are struggling: “as though it's happened to me, though the feelings are much less strong”. They might not be able to understand or translate others’ emotional state into words, but they can share it nonetheless.

Many autistic people do experience affective empathy to what we might term “normative degrees”. Many autistic people struggle with an excess of affective empathy, white blood cells struggling to fight off the emotional contagion of an entire planet of hurt. Many autistic people, like me, can say we feel glad or sympathetic when a friend tells us they’re happy or sad, but cannot understand or locate this “feeling” on the same emotional level as our own happiness or sadness. Many autistic people can flip through these different states at will, switching on and off those that are helpful or harmful in context; many, instead, career from one extreme to another without willful control.

These are categories of being that I have picked out of a swirling mess and made discrete, in an attempt to name and describe something I find unnameable, as difficult for me to grasp as the concept of going to a quiet place and letting myself feel all the hatred in the world—whatever that means.

I’ve barely begun to unpack the shame tied up in admitting I don’t know what it means to experience emotions for someone other than myself. Traditional narratives of empathy, compassion, kindness, goodness—they add up and multiply in my head to tell me that what I’m (not) feeling makes me a monster.

But compassion and kindness are not passive traits. They are active choices. I could be doing more—we could all be doing more—, but when my friends and communities help me see myself honestly, flaws and strengths, I am validated in the fact that I do support and fight for people, regardless of whether or not I can cry for them. Emotional responses and practical responses aren’t so disconnected for everyone; my friend said their affective empathy is a big driver of their compassion, whereas for me it’s about a purely objective sense of justice, and the knowledge—rather than the emotional urge—that it’s my responsibility to make things better for others wherever I can. Neither of these drivers is inherently better or worse.

Simon Baron-Cohen, a man known by pretty much all autistics and (at least in my circles) hated by most, responded to the recent UK terror attacks with a tweet that, whilst ostensibly sympathetic, essentially served as a plug for his book, Zero Degrees of Empathy. According to his own definitions of autism, Baron-Cohen, as an allistic (a non-autistic person), has a greater propensity for both cognitive and affective empathy than I do. I don’t doubt this—I’d imagine it takes a specific understanding of others’ mental state to manipulate a tragic situation into a self-promotion opportunity. Baron-Cohen is a prime example of the difference between empathetic emotions and compassionate actions, and his book—which explains violence as simply the result of a cognitive deficit in empathy—is a prime example of his ignorance with regards to that difference.

Baron-Cohen’s theories of autism, moreover, centre around the idea of the “extreme male brain”. There are many, many more problems with this theory than I have the space, energy, or knowledge to elaborate on, but its relation to theorizing empathy reinforces the deeply ingrained (and deeply misogynistic) societal expectation that a) women are natural empathizers and men are not, and b) this means that emotional labour, caring responsibilities, etc., must fall to women. Baron-Cohen is one in a sea of voices exempting men from the responsibility to act compassionately—regardless of how much empathy they experience, and what kind.

I stayed awake the night of June 8th, watching the UK election results map turn blue bit by bit. I tried, without getting very far, to trace a mental genealogy of the factors that guide the empathy of conservative voters in certain directions and not in others. I wondered why someone would feel the need to turn off all the noise and contemplate how many people hate other people and the ways they express that hate when instead they could turn on the news, or better—given who the news represents and who it forgets—, make a commitment to not only use other channels to listen to and learn from, but also take action for those in need of solidarity against societies and governments that (whatever the cognitive makeup of the individuals within them) collectively show neither empathy nor compassion towards marginalised people.

I saw the 18-25 age demographic turn out at record highs to vote, overwhelmingly, for a party that—whilst obviously imperfect—gives me as much optimism for steps towards systemic compassion as I could dare to hope for within the existing system.

When a hung parliament was announced, I went to sleep.

 

About the Author

EMRYS TRAVIS is a disabled writer and activist trying to queer a degree in Modern & Medieval Languages at the University of Camridge as much as is possibile. They also write with the Italian feminist collective F Come and work with the UK organisation Action for Trans Health.

On Chronic Pain: A Little Theory, A Lot of Magic

I cannot run. Well, I can run, but I am not supposed to. Four years ago, I was diagnosed with a hip impingement—a degeneration of joint tissue in my right hip. The orthopedic surgeon held up the X-ray and pointed to a very small spot where the cartilage had been worn away. It could have been genetic, he said, it could have been doing too many splits and grand jetés in ballet. The cause was unknowable. The pain of the impingement was something I would have for the rest of my life, he said. Nothing to be done, he said, but I should stop running, should take up swimming, biking, walking instead—anything that would not be too hard on my joints.

I was never much a runner to begin with, but the reality of never being able to run a marathon in my life, even if I wanted to—to have this option closed off to me forever made me despondent. When I returned home from the orthopedic center, I fell apart in our family kitchen. In front of my father and sisters, I just cried, repeating: "Why? Why? Why?" Why was I given such a body? I hated it for its inadequacy, its stings and throbs, how it prevented me from being fully alive like other people.

To embrace the magic of my body, its particular quirks and conditions—the impingement, the ensuing tendonitis, and then eventually the dermatillomania and vaginismus and anxiety—to see this body as something to celebrate was and is complicated. There are moments when I feel utterly monstrous and grotesque—even if it does not appear that way, with my bright lipstick and cute dresses. When I asked friends for any theory out there on the grotesque body, I was directed to the philosophy of Mikhail Bahktin. I am not much of a theory person. Truthfully, I often find theory dense and difficult to follow. However, reading Bahtkin's thoughts on the grotesque creatures of folklore in his essay "The Grotesque Image of the Body and Its Sources" helped me to embrace my body as a possible site of magic.  

According to Bahktin, the grotesque body "is a body in the act of becoming. It is never finished, never completed; it is continually built, created, and builds and creates another body" from the parts of animals, inanimate objects, transgressing the boundaries between the inner body and the world. This can be seen, Bahktin argues, in fairy tales, myth, and folklore, in the representation of "extraordinary human beings," beings with "a fanciful anatomy": half-human, half-animal creatures, like sirens, satyrs, centaurs, elves, sprites, and giants. 

This idea—that having irregular, unusual, "not-normal" bodies could share this affinity with transformation and magic—was empowering to me. The strange, enchanting beings that populated my imagination as a girl—the fairies, unicorns, mermaids—could suddenly be held as emblems of existing with disability, conditions, irregularities. My body has felt deviant and humiliating at times, something to keep hidden and to myself. But returning to fairy tales repositioned my thinking—it helped and still helps me to reclaim my pain as, perhaps, magical.

It is striking to me, on reflection, how often bodies morph, meld, become changed and irregular in fairy tales. Bodily transformation is crucial to the protagonists in a majority of fairy tales, particularly those of the Brothers Grimm and Hans Christian Andersen: Thumbelina is born the size of a thumb and later grows wings to become a fairy; princes live as frogs or swans or beasts; the Little Mermaid loses her fishtail and grows feet, which cause her pain like sharp knives. These transformations are depicted at times as mystical and, at other times, deeply agonizing. I found reassurance even in the anguish of these stories, maybe because my own bodily changes—those of injury, aging, genetics—are painful. Fairy tales acknowledge this pain through the modes of spells, witchcraft, enchantment—a framework that excites me, as it allows me to see the possibilities in my conditions, to see them even as heroic.

Johanna Hedva's "Sick Woman Theory" thoroughly discusses this desire to reclaim "traditionally anti-heroic qualities—namely illness, idleness, and inaction" as heroic. I find so much courage and encouragement in Hedva's writing, especially when she states: "Sick Woman Theory is for those who are faced with their vulnerability and unbearable fragility, every day, and so have to fight for their experience to be not only honored, but first made visible." To me, Sick Woman Theory is inherently entwined with the bodily transformations and folkloric creatures of fairy tales. If we see heroism in facing our vulnerabilities, if we see the possibility of magic in our conditions, there is power in recognizing our abilities and disabilities as sites for beauty, strength, and resilience.

On particularly painful days, I still tend to ask myself (and the universe): "Why?" However, I am trying to bring a whimsy and imagination to my body. I visualize myself as this sparkling creature-princess with glitter and orthotic shoes and prozac pills, an image of myself as an extraordinary human confronting daily pain, a pain worthy of telling.

 

ABOUT THE AUTHOR

EMILY CORWIN is an MFA candidate in poetry at Indiana University-Bloomington and the former Poetry Editor for Indiana Review. Her writing has appeared in Gigantic Sequins, Day One, Hobart, smoking glue gun, and elsewhere. She has two chapbooks, My Tall Handsome (Brain Mill Press) and darkling (Platypus Press) which were published in 2016. Her first full-length collection, tenderling is forthcoming in 2018 from Stalking Horse Press. You can follow her online at @exitlessblue.

 

Works Cited

Bachtin, Mikhail. "The Grotesque Image of the Body and Its Sources." Trans. Helene Iswolksy. Rabelais and His World. Bloomington: Indiana UP, 2009. Electronic.

Hedva, Johanna. "Sick Woman Theory." Mask Magazine. Mask Media, Jan. 2016. Web. 1 June 2017.

reclaiming my disability

news flash: you don't have a say in my identity.

humanity is made up of a plethora of diverse & complex cultures, complete with different & generally enriching viewpoints—but still, the norm is this universal society where the majority of people are fully abled & being anything short of that is considered pitiful, or worse, taboo. being impaired, whether it be physically &/or mentally, is heavily stigmatized, to the point where it seems absurd that people would want to embrace that part of their identity & be called disabled. yet there seems to be an increasing trend—for want of a better word—of people wanting to & even yearning to accept their limitations—even (& perhaps especially) when society says no.

a big part of this seemingly newfound grasp at individuality seems to be the rise of all these ‘acceptance’ campaigns—being at peace with who you are—whether it be queer, fat, disabled—&, of course, these are great! everyone should feel comfortable in their own skin, regardless of whether it’s scarred or dark. however, another—barely acknowledged—part is the increase in diagnoses of ‘invisible illnesses’—which result in you looking healthy whilst your own self is working to tearing you apart.

this label neatly categorises mental illnesses. a nod to the canon; a disgruntled glance to all the demons, sharp-toothed & blood-soaked, clouding & enshrouding your judgement. however, there seems to be an unwritten rule that physical disabilities must come with the full wheelchair & lucy, stop staring at that person! package (hushed whisper comes free if you also order a disability pass card!) & that's just not true! whilst people unfortunately discriminate & oppress the disabled, disability itself does not discriminate: it can be part of you, despite the fact that you can walk or talk like abled people.

let me elaborate: it is mainly autoimmune disorders that are met with the but you don't look sick! exclamation, accompanied by an encouraging smile—but, of course, i can only speak of my own experience. whilst such a comment may seem complimentary, it really isn't. it undermines the sheer effort required for me to turn up to & interact in social spaces. it makes things awkward when i have a flare-up, when my legs decide to randomly give way. it makes me seem pretentious for publicly taking medication. it makes me question the decision of sitting in disabled spaces on public transport, because my condition(s) mean i can't actually drive, even though i may struggle to walk, & despite the fact that i'm partially sighted, being blind in one eye. it makes me think that because i can manage with just glasses, this means i'm not ‘disabled enough’. 

because, as we all know, disability is some sort of competition, where mobility scooters & reduced/free treatment costs give you bonus points, as well as all the condescending smiles & nods! 

i’m aware that, although most disabled folks don't have the same conditions as me, they certainly do have the same challenges—trying to navigate their illness(es) in a place where you are judged hugely by outward appearances. the fact that i feel the need to push myself past my physical/mental capacities in order to adhere to societal expectations is beyond stupid, & yet the world has normalised the concept that there is a certain way to be disabled or that all disabilities look the same.

it seems my countless hospital appointments, numerous medication charts, & fatigued muscles mean nothing if i don't have a mobility aid or a companion who is given all the heroic glances & the oh, it must be so hard! comments (because, of course, it's not hard being disabled—but that's a can of worms for another day). clearly my cough/breathing assistance machine is arbitrary if it is not constantly attached to me.

i am tired. probably because of my illness—which hinders my ability to do most things & therefore renders me disabled (in case you didn't get the memo)—but also because of the pressures forced on me (& others like me) to be forced into this continuous identity crisis—well, i can't do everyday, ‘normal’ tasks, so i must be disabled, but, well, but i don't look disabled enough!

clearly, society needs to change its viewpoint. don't worry, you don't have to look so uncomfortable—i want to be called disabled! please acknowledge the fact that you recognise my limitations, validate my struggles & illnesses—but, at the same time, don't just see me as my disability. i may have weaknesses surplus to the general population, but if i can walk generally unaided, despite my condition, then i can do so much more! i am a warrior, a monster, beautiful & dismantled & wistful & disabled: this is me, & i fight to reclaim myself. only i can do that. not you, not when you've never had to be rushed to a&e, thinking you're not going to survive; not when you don't have to take numerous medications daily. not when you think disability is a synonym for inferiority. 

i accept i am disabled & you should too. i am disabled despite what you think & in spite of a heavily ableist worldview. i am disabled & i reclaim my disability—not to aggravate you, but so i can learn to be at peace with who i am.

i, a mess of shaking hands & side effects, know that recovery for me is but a dream, but at least i can recover my identity. again, i reinstate: i am wistful & disabled. 

& only i get to decide that.

"Fledgling," "Wild Seed," and Bodies That Resist

In her introduction to Octavia’s Brood: Science Fiction Stories from Social Justice Movements (AK Press, 2015), Co-Editor Walidah Imarisha writes, “Whenever we try to envision a world without war, without violence, without prisons, without capitalism, we are engaging in speculative fiction. All organizing is speculative fiction.” Imarisha goes on to envision forms of organizing which, like Octavia E. Butler's science fiction writings, can “claim the vast space of possibility … birthing visionary stories.” She notes, in a succinct yet expansive passage, the way that Butler’s fiction “explored the intersection of identity and imagination, the gray areas of race, class, gender, sexuality, love, militarism, inequality, oppression, resistance, and—most important—hope. #BecauseofOctavia we can see that the resistances imagined in Butler’s fiction are complex, poised through and against many hierarchies at once.

This short essay will seek to examine two of Butler’s novels in light of their reimagined depiction of what has classically viewed as the “monstrous,” reimagined as bodies that resist—materially, interpretively, categorically: her novel with the shapeshifter Anwanyu at its heart, Wild Seed, and her perhaps lesser-known final vampire novel, Fledgling, with the vampire, Shori, as its symbiotic nerve center.

Read More

Pedal Your Way

"I don't know how to ride a bike." Or, "I can't ride a bike." These were phrases that, if you were like me, were a source of shame, on par with having to leave a sleepover early because you got scared of the bad guys in Home Alone.

When my peers graduated from their training wheels, I never quite graduated with them. But every summer, I (stubborn, irritated) would drag a two-wheel bike from the garage and figure out new ways to tip it—and me—over. This would continue, endlessly, until I got frustrated or injured and gave it up till the next summer. My (spastic, stubborn, irritating) body has never been great when it comes to balancing, so the following summer would go much the same way.

I thought of myself as determined, and as not giving up. Which I was, in a way, but what I was also not doing was giving myself options. And with bikes, as with life, there are always options.

It wasn't that I couldn't ride any bike—I had grown up pedaling away on the back of tandems and trailer bikes. Rather, I couldn't ride the wrong bike. Which for me, was a two-wheeled bike without anybody captaining. But there's a lot more to cycling than two wheels and two feet.

A trike is the right choice for me because, like many people with neuromuscular disabilities, I have trouble balancing. In my attempts to learn to ride a standard bike, I always toppled, especially when it was time to put my foot down and hold up the bike. With a trike, I can actually use the handlebars and pedals to help me balance when getting on and off. Three wheels gives me the stability I need to get out and ride.

I found that, for me, adding an extra wheel is a great way to ride independently. And if you think a trike is the right cycling option for you, too, I'll share some thoughts on picking the right model. Many bike stores will only have a single trike in stock, often single-speed, with coaster brakes (which I utterly hate, for reasons I'll get into later). But just as you have loads more options for cycling than just bikes, you also have lots of choices for trikes.

Handcycles are a great option for people, but I know next to nothing about them, so I'll leave that topic for more qualified cyclists.

 

Customization

So, I have strong feelings about trikes. I've found options that work for me, and things that I think are a scourge upon cyclists. You may have different opinions, and might not share my burning resentment of single-speeds, for example. That's awesome.

You may also have different needs. I have spastic cerebral palsy, and that informs my choices about trikes and other forms of exercise. Whether you have the same, or different, disability, your perfect trike may be different than mine, because your body is different than mine. You need to figure out what works for your body and your situation, and be relentlessly passionate about pursuing that.

To get you started, here are some of the many trike components you can customize.

Handlebars

Handlebars are not just for steering. Messing with your hand position and the angle of your handlebars is a simple way to "hack" your posture. You (or your nearest cycling buddy with a wrench) can experiment with adjusting your handlebars, which might help you get them into the position that you want.

Whether you're concerned about comfort, or just getting colorful streamers, you should be able to find handlebars that are worth holding onto. Some cyclists enjoy more textured grips, while others enjoy smooth handlebar wraps; either way, they should fit your hands. For example, if you're likely to support your weight with your hands, you might enjoy a more padded grip. Our hands are all unique, and our handlebars can be too.

Pedals

Don't worry if, like me, you have trouble keeping your feet on the pedals. Nothing will explode and, generally, your trike won't fall over if you let one foot hang free for a rotation. But you do have ways of convincing your feet to stay where they're supposed to, if that's what you need. Clip-in bike shoes are an option you can find at a mainstream bike store. I haven't tried them, but they are supposed to attach your foot to the pedal in the correct position. I suspect they may be difficult for a rider with lots of side-to-side foot movement, as they are meant to unclip.

There are also adaptive pedal designs, which provide more significant straps and support, as well as pedals that address internal rotation of your knee. Sometimes my feet manage to escape from pedals like these, but they can often come with a myriad of strap arrangements to keep your feet pedal-ready.

My personal favorite are toe clips, which you can find at a mainstream bike store. Despite what the name suggests, you slide the front of your feet into them, and they gently hold your feet in place. They don't manage to keep my feet totally stable (which would possibly be too much to ask of a piece of plastic), but they make a good attempt.

Gear shift

Okay, everybody! Buckle up (or put on your helmets). This is where I'm going to rant about gears, and why single-speeds grind my gears (haha?). I mention this because single-speed appears to be the default trike option at many stores. There must be some benefit that I'm not aware of, because it's always sold as a feature, rather than a bug. Changing gears lets you adjust your pedaling resistance, and single-speed leaves you with a fixed, low pedaling resistance.

I tend to dislike (okay, despise) single-speed because, by making pedaling easier, it actually makes cycling harder. That may sound weird, but if I can't shift into a harder gear, I'm deprived of momentum and a certain amount of muscular control.

There are lots of hills where I ride, so it's really useful to be able to gain speed and momentum before I try to haul myself over them. Being able to adjust my gears lets me do that. For me, maybe counterintuitively, it's actually simpler to pedal if I have some resistance to push against. I've heard this from other people with cerebral palsy as well. My legs are especially affected by my spasticity. The muscles that pull knees in are tight and make it hard for me to keep my legs in a neutral position as I pedal. Having more resistance helps me control the path of my legs and avoid banging them against the center bar. My disability also means that I fatigue faster than other people, so it's really nice for me to be able to have really specific control over the pedaling difficulty.

If you find that you also prefer a 3 or 6-speed trike, it's definitely possible to find them. You can order them on the Internet by searching "x-speed adult trike." Your local cycle shop will probably also stock a particular trike upon request. You could even replace, or have someone else replace, the gear mechanism on a single-speed with another option.

Consider your hand strength and comfort when you're choosing the type of gear shift control you'd like. Some of them work with a click, like a button, while others require twisting your wrist. You can always choose which side you'd like the controls to be on. I suggest placing your gear shift and bell on opposite sides so you can happily ding at people while you zoom down hills.

Brakes

We've talked about things that will make a trike go; now we need to talk about what makes it stop.

There are many technical choices you can make when it comes to brakes, but I'm going to focus on braking controls. Your biggest decision when choosing brakes is whether you'd like hand brakes or coaster brakes. You use coaster brakes with your feet, pedaling backwards. These seem like they'd be great for somebody who has trouble with their hands, because hand brakes can take a bit of strength.

Coasters aren't my favorite, because I like to be able to pedal backwards on various occasions. I'm right-footed, so starting with my right foot up lets my weaker side go for a bit of a free ride when I'm first getting momentum. I've nearly flung myself off my trike while flying happily downhill, and tried to backpedal to bring my right foot up; instead, I screeched to a stop, and almost catapulted over the handlebars. Needless to say, I can't be trusted with anything other than hand brakes.

I prefer to have a handbrake on each side, so I can brake on the front and the rear wheels. But it is possible to get just a front brake, especially if your grip strength isn't as strong on one side, or if you don't plan to do much careening downhill.

 

Comfort

Saddle-sores are a great way to cut your cycling career short. Sitting in comfort is key, especially if you have trouble standing to pedal. It's best to avoid friction when you head out on a ride.

Seats

Have a (suitable) seat. It could be that the bike seats advertised as most comfortable for other people won't be quite right for you. I tend to slide forward on cushier, wider seats, and end up with most of my weight perched on the narrow front (ouch!); I do much better with firm, sportier seats. You can explore different levels of firmness and different designs.

Get the right seat for your anatomy.

For some riders, it's worth looking into female-specific seats. Some of these have a cut-out in the middle to relieve pressure when riding. It's also important to check spots that are sensitive for you personally. I try to pay attention to the sides of the seat; I need to make sure there aren't any obnoxious, pokey bits that will scrape my legs as they turn in.

Clothing

The clothes make the cyclist! Or, at least, make the cyclist more comfortable. It's a great idea to bring the padding with you, so you can have the comfort you need for every ride. As with everything else mentioned here, your cycling clothes need to fit you and your situation. Mountain bike shorts are often two layers, a snugger under layer and a baggier outer layer. They tend to look a little more like regular shorts than road bike shorts.

Road shorts are a sleeker, single layer. I initially found the snugness less comfortable, but this style actually works better for me, since they don't bunch up based on my internal rotation.

You can also go long, and wear bike pants. These are nice, because they're a little bit of extra protection against skin irritation. I tend to knock my knees against the center bar when I ride, and having pants makes things a little more comfortable, which is the goal!

If you want bike shorts that don't look like bike shorts, you can consider the miraculous skort. Not quite shorts, not quite a skirt, a skort can be a stylish way to get a bit of padding where you need it.

Cost

Getting the perfect trike can be costly, but it doesn't have to be. Many people with disabilities have a lot of financial pressures to think about, but that doesn't mean you can't get into cycling. There are grants that can help you afford sports equipment, such as Access for Athletes.

There's also an entire community that can help get you pedaling. For example, you could look into an adaptive sport club to try out a variety of sports. Here's a list of groups in the U.S.

Your local independent living center may also have ideas for local sport groups or sources of adaptive equipment. You could also seek out any local trike rider groups on social media. If nothing else, you should absolutely do a test ride on any trikes your local cycle shop has. That will be a great starting point.

Helmets

I'm going to do a magic trick and turn into my mom for a second, here. Wear your helmets. I know you don't legally have to if you're an adult, but adults still have brains, and brains are delicate. Brains are also important: all of your cool ideas live there. And, as many of us may already know, dealing with brain injury is not a walk (or, in this case, a trike ride) in the park.

Make sure your helmet fits.

As with any biking equipment, your helmet should fit you, and should be snug and comfortable.

Know when it's time to move on.

If your helmet has to do its job—i.e., if you hit your head while wearing it—, it's time to send your helmet to the great bike rack in the sky. When your helmet is involved in a collision, there might be some damage to it that you can't see, which could make it less effective the next time you have an exciting encounter.

 

Conclusion

There are many ways to move, and being active is important for all of us. Prioritize fun! There are plenty of activities I didn’t mention here, so keep looking if you're not sure what your next fun hobby should be. If you decide that trike riding is right for you, do yourself a favor and take the time to find a good match. Maybe I'll see you on the trail! Whatever you choose, be persistent, creative, and always wear a helmet. Happy pedaling.

 

About the Author

STEPHANIE STEIN is a poet with a love of languages. Her work has been featured on Monstering and Red Wheelbarrow. She was a poetry editor for the 2017 Student Edition of Red Wheelbarrow magazine. She was an advisor for the Hollows Shout the Mountain Down collaborative writing workshop with Monstering and Winter Tangerine. Previously, Stephanie worked on various research and writing teams in the high tech field. Now, Stephanie is pursuing a master's degree in linguistics at San Jose State, where she is also seeking a computational linguistics certificate. You can find her on her Tumblr.

bog bodies

CW: Body horror, death, violence

 

we rise from the bog, skin wet and squelching.
glistening in the thick, damp sunlight. the word

around town is that we were lucky to escape.
our hands have dried to crisps, brown

and curling like dead ferns, and we smell like rotting
things. our bodies soft stacks of gassed rabbits, eyes

brown apples. when a rescue party is sent out across
the marsh for those who didn't escape, we join it.

perhaps because we are kind, but almost certainly
because we are sick in a way no one else understands.

///

THERE ARE NO SURVIVORS. words of bone,
spat out of a bitter, gummy dark. grass yields

beneath our bruised knees. it is all too easy to stay
here. our skin turns to mould.

One fat bog.
19 dead. / 19 nights of survivor's guilt.
19 weeks—
19 months—
19 years.

we pull the bodies from the bog. some are leather. boneless.
liquid men and women. pickled, preserved— drowned

in a womb of vinegar, birthed in a clamour of screaming
and tight-knit prayers. God's name spooling from pink

lips; eyes worn red. the worst are those who were drowned

when the weather was warm, when the air clung and the
wasps hovered before the apples of our eyes:

skin falls tender from the bone.
even the insects don't want them.

 

About the Author

ZARA MUNRO is a poet and storyteller, currently studying English Literature and History of Art at the University of Edinburgh. She is currently working on her very first poetry collection.

Zara is Director of Social Media and Director of Internal Affairs at Monstering, a magazine for disabled women and nonbinary people. She is also the Social Media Manager for Half Mystic, a literary journal about music, and half of ZRIE, a recently-founded literary arts collective.

She was a recipient of the Scottish Book Trust's Young Writers Award—a national award for young people aged 13-17—in 2013 at the age of 15. More recently, she has been published in The Dinner Table Review, The Rising Phoenix Press, and on Monstering's blog.

On Twitter, Zara can be found at @TheMostSalt.

monster

YOU DON'T THINK I CAN BE A MONSTER?

I CAN USE THESE BITTEN NAILS AS CLAWS.

I CAN SPIT WORDS LIKE THEY ARE VENOM.

I CAN TAKE THE LIGHT FROM SOMEONE'S EYES WITH A FEW CRUEL SMILES.

I CAN USE YOUR SECRETS AS ARMOR.

I CAN BREAK PROMISES LIKE GLASS SLIPPERS (THEY NEVER FIT ME ANYWAY).

I CAN SIMPLY STOP CARING ABOUT THE MISFORTUNES OF OTHERS.

I CAN CRUSH A HEART AND BLOW THE POWDER INTO THE EYES OF ANYONE WHO TRIES TO GET CLOSE TO ME.

I CAN DANCE WITH YOUR NIGHTMARES AND LEAVE WITH THEM WHEN THE SUN RISES.

I AM, AFTER ALL, ONLY HUMAN.