Charity™ and Disabled Futurity

This year I had the opportunity to write a story for the all-disabled author anthology Nothing Without Us edited by Cait Gordon and Talia Johnson (Renaissance Press, 2019). My story was set in a future in which the Canadian government stopped providing any form of support for Disabled people and instead decided to corporatize disability and give the responsibility for Disabled people to the Charity industry.

On the Spoonie Authors’ Network, I published a short piece talking about my research on disability, my thoughts about disabled futurity, the relationship between theory and speculative fiction, and my inspiration for the story Charity (TM) that I wrote for the Disabled Futurity anthology.

Spoonie Authors Network

Editor’s note: I invited Derek Newman-Stille to share with us their own experience with writing fiction, as some people might only know them as a champion in elevating speculative fiction authors and/or disabled voices. Their short story, Charity™, is the grand finale of the Nothing Without Us anthology.

Most of my writing about disability has been either academic or experiential, critiquing the representation of disability in the real world and examining my own experiences with my disabled body and identity. I have done analyses of the representation of disability in fiction, have explored the impact of government policies on disability, looked at how DisArt (disability art) articulates disability and the disabled community. I have shared my own stories about disability—how my disability relates to abuse I experienced as a child, how my disabled and queer identities interlink, the way that bullying and violence shaped my experience as a disabled…

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Disability Tropes 101 – The Magical Cure

Disability Tropes 101- The Magical Cure

By Derek Newman-Stille

While the Spoonie Authors Network is on a temporary break, I wanted to briefly move my Disability 101 posts to my own site – Dis(Abled) Embodiment. If you are interested in checking out the rest of my Disability 101 posts, please go to https://spoonieauthorsnetwork.blog and read them on the Spoonie Authors’ Network. In the meantime, please enjoy my exploration of the Magical Cure Trope

Authors writing about disability frequently have difficulty with the idea that we can live life happily with a disability. This is something that is not limited to literature, and, of course, there are elements of this trope that shape people’s perceptions of disability. For example, when writing a tweet about the problem of people assuming that our lives as disabled people are shaped exclusively by tragedy, I wrote that we can be happy AND disabled. In response, several people send messages that this was impossible and telling me to “f-off” and suggesting that disabled people’s lives can only be filled with suffering and that death is therefore a blessing to us. This ideology is, of course, highly problematic, to the point where it also is cited as the motivations for so-called “angel of mercy” killers to kill disabled people, believing that we are better off dead.

Frequently, abled authors who write about disability feel that they need to either have their disabled characters die as part of their narrative, or have them become magically cured so that they become completely abled. They do this largely because they can’t imagine that one can live a happy life with a disability, so in their wrapping up of their narrative to provide a “happy ending”, they feel the need to either eliminate the disabled character and thus “end their suffering” or to suddenly find a cure for them. There is a term for the first trope that I mentioned – the “Better Dead Than Disabled” trope. However, that isn’t the focus of this particular post. Instead, I want to focus on a related trope, the “Magical Cure”. Both of these are a form of erasure of disability, but the Magical Cure trope relies on the idea that somehow someone’s disability is suddenly erased. Frequently these erasures happen because of the marvels of science, the exertion of willpower (because frequently authors decide that if we want to be abled enough, it will suddenly occur), or because of literal magic. All of these possible cures fall under the “Magical Cure” trope even though only the last one involves actual magic.

Isabel Brittain refers to this trope as the “Happy Endings?” Trope in her article “An Examination into the Portrayal of Deaf Characters and Deaf Issues in Picture Books for Children” (Disability Studies Quarterly, Vol 24, No 1, 2004). She states that in this trope “The author fails to see a happy and fulfilled life being a possibility for a character with an impairment”. She questions the notion of the happy ending by adding a question mark at the end of her title for this trope. She observes that the issue is the failure of imagination of the author to consider that one can have a fulfilled life while also being disabled, but I would also add that in addition to the failure of imagination, the author is also embedded in a culture where ableist ideas about disability are the norm and where it is assumed that disability is the personification of tragedy and “mistake”. Tanya Titchkosky characterizes this well when she states that “What is wrong is seen to belong to disabled people in a more intimate and personal way than it does to others” (Disability, Self, and Society, 2003). Disabled people are perceived as a personification of mistake and tragedy, assumed to be lesser than an able-body. As a result, disability is often conceived of as a fate worse than death and the notion of a happy life for disabled people is not possible for most abled authors to imagine. So disability is perceived as something to be “solved”, as something that is in need of fixing, and therefore abled authors frequently tie up their narratives in what they believe is a happy ending – an erasure of disability entirely.

There is a genre that is particularly wrapped up in the notion of the Magical Cure, and it is the genre that often has an interest in the topic of magic – fantasy. In her paper “Devices and Desires: Science Fiction, Fantasy and Disability in Literature for Young People” (Disability Studies Quarterly, Vol 24, No 1, 2004), Jane Stemp points out that the ease of magic in fantasy means that often disabled people’s bodies are made able with the flick of a wand and a few magical words. But she also points out that fantasy has an interest in the notion of the perfect body and that frequently in fantasy, the imperfect body is also portrayed as an imperfection of moral character. Fantasy has, as she suggests, a pattern of replicating “mythical, perfect archetypes” and as a result, has a fascination with ideas of “perfection” and its relationship to the body and ability.

Frequently the Magical Cure in fantasy is connected to the idea of the quest and the notion of suffering and triumphing over evil in order to finally be rewarded with a cure and live happily ever after. This problematically reinforces the idea that able-bodiedness is not just an ideal state for any body, but can be a reward if one works hard enough.

The trope of the cure can be particularly damaging for disability rights since it also suggests that disabilities can and should be fixed, which is particularly problematic for people whose disabilities are not aided by medical or other interventions. It also reinforces the idea that funding should be given to cures rather than to accommodations to disabled people, suggesting that our disabled bodies should be changed instead of changing the social and physical environment that provide barriers to our access. So instead of working to include us, this trope reinforces the idea that we should change our bodies in ways that are painful or impossible in order to fit into a one-body-type-fits-all ableist system and environment.

I want to highlight some fantasy works that resist this trope, particularly Alison Sinclair’s Darkborn Trilogy, in which there is a world where magic exists and where half the population is blind, but they never try to modify themselves through magic in order to see. Their blindness is part of their culture and their cultural interactions. I talk about this extensively in my article “Where Blindness Is Not (?) a Disability: Alison Sinclair’s Darkborn Trilogy” (Mosaic Vol 46, No 3, 2013), so I don’t want to replicate that here. I also want to highlight a fantasy story published this year in the all disabled anthology Nothing Without Us (Renaissance Press), titled “The Descent” By Jamieson Wolf. In this story, Wolf’s narrator, Jefferson, initially sets out to learn magic in order to “cure” his disability, even dissociating himself from his disability by naming it “Max Shadow”. Despite learning magic, Jefferson is not able to “cure” his disability and eventually seeks an oracle, once again turning to magic in order to try to remove his disability. Yet, throughout the narrative, Jefferson gains a certain intimacy with Max. Not only does he not remove his disability through magic, he gradually comes to understand Max, embracing him and shifting his perspectives on the need to be “cured”. “The Descent” deals with the internalized ableism we feel as disabled people, often assuming that the only way that we can interact with the world is through being “cured”, i.e. made able-bodied. Wolf’s use of the disability as a personified character who is interacting with the disabled person he comes from allows for an exploration of that dissociation from disability that our internalized ableism can create, but it also allows for the disability itself to be personified and humanized. Instead of othering the disability, Wolf’s technique personifies disability and brings up ethical questions around the erasure of disability.

Longing for A Deaf Community

Longing For A Deaf Community

A review of Raymond Luczak’s “Mafia Butterfly” in Nothing Without Us (Renaissance Press, 2019)

By Derek Newman-Stille

Raymond Luczak’s “Mafia Butterfly” is pure Deaf Pride. Luczak explores the powerful intersection of femininity and Deafness with a character who turns off her hearing aids so she doesn’t hear catcalls, who challenges men who try to reduce her to her body, and who recognizes that the second she speaks and they recognize she is Deaf and uses sign language, they realize that “suddenly they’re not in power”. 

Luczak points out the double violence that Deaf women experience, both because of their Deaf identity and because of their gender identity, having his character comment on the ableist, sexist comments that “Deaf people are supposed to be great in bed because they don’t know how to say no” and that because of her Deaf identity, she is perceived to be “all about the body”. He explores the frustration at a family that refuses to learn to communicate with her, pointing out that she decided to take speech therapy for her family’s benefit but they won’t take time to learn ASL. 

Luczak gives the reader insight into the joy that people in the Deaf community experience when they are able to connect and use ASL with his character saying “when I tasted the forbidden fruit of Sign, I suddenly realized that I had been sleeping all my life in a cocoon”. ASL is not just a way of communicating – it is transformative, bringing his character life. She experiences pride in her identity, describing herself as “I wasn’t just deaf; I was Deaf. Capital-D!”. Deaf identity was powerful for her, allowing her to find a history, a culture, and a language. 

Yet Luczak also explores violence between members of the Deaf community and bullying by people who assume positions of power. Luczak’s narrator experiences rejection from the community she sought and the identity she needed. 

Luczak gives the reader insights into ASL when he translates signed dialogue into English, preserving the cadence and ‘voice’ of ASL in his writing with statements like “Himself same-same m-a-f-i-a decide maybe you nothing. If happens, worry not. Himself run Deaf community not.” Luczak uses these lines to speak to an audience that knows ASL, while also bringing DeafWorld closer to the hearing world and letting hearing readers experience the need to translate for once. Simple acts like this bring notice to the audism (hearing-centric nature) of our world and the expectation of Deaf authors to translate from ASL for a presumed English reader. 

“Mafia Butterfly” is a tale about the need for a Deaf community. It’s a story about resistance not only to the violence of a sexist, audist world, but also violence within the Deaf community toward members who don’t have the same access to Deaf resources. His narrator asks “why are many Deaf people so afraid about being judged when they choose to befriend a new Deaf person? Can’t they see that it isn’t healthy to dismiss people they barely know? We need more Deaf friends” 

To discover more about Nothing Without Us, go to https://renaissance-107765.square.site/product/nothing-without-us/117?cp=true&sbp=false

To find out more about Raymond Luczak at https://www.raymondluczak.com

Cry Coyote

Cry Coyote

A review of Jennifer Lee Rossman’s “Names” in Nothing Without Us (Renaissance Press, 2019).

By Derek Newman-Stille

Jennifer Lee Rossman’s “Names” is a tale of alterity, a tale of the anger a small community has for people they consider “peculiar”. Like many outsiders, Rossman’s narrator, Beck, is able to notice things that others don’t, able to pick up on things that her community is invested in ignoring. 

Rossman’s use of a character who misreads “normative” social cues allows for a complex social interaction with other characters and propels us into a situation where conversations can be precarious. Rossman is able to draw us into Beck’s mind in a way that allows readers to feel the anxiety and danger of communication, sharing a vulnerability that adds power and dimension to this story and invites readers to think more about dialogue and how dialogue often centres “normative” communication styles.

While centring a character who has non-normative social interactions, Rossman weaves a tale about the magic of speech, thought, and names, exploring a shape-shifter who can be drawn in by thinking or speaking about them. Communication suffuses “Names”, inviting readers to speculate about the way that language and social interactions shape our world. 

Rossman explores the complex and often dangerous interactions that non-neurotypical people have with the police, and couples this with the threat of police racism. Beck tells the police that they won’t be able to solve a crime involving the death of a Navajo woman because “all your deputies are white”. Beck, who is a person of colour in addition to being non-neurotypical, is aware of the way that police will often not be able to navigate knowledge systems and ways of interacting with the world that are not their own. Beck recognizes the uniqueness of her perspective and that this gives her insights that police may not have.  

Rossman tells a tale of a murder case that can’t be solved with neurotypical, white ways of thinking, one that requires different knowledges and experiences that most of Beck’s small town are not capable of working with. This is a tale of a girl who has been told all of her life that she is peculiar and shouldn’t be herself facing a monster who is capable of taking the form of anyone else, shifting into other people. It is a tale of someone who is incapable of being someone else learning that her identity is powerful. As Beck states “All my life, people have tried to make me say names, make me look them in the eye and touch them without flinching. They shame me into not being me. And all my life, I’ve tried not to be. Tried not to be me. But this is me. I’m peculiar and I can’t be any other way if I tried, and I don’t want to try.”

Rossman’s story, “Names” is part of the anthology Nothing Without Us, a collection of fiction by disabled authors edited by Cait Gordon and Talia Johnson and published by Renaissance Press. Nothing Without Us seeks to give voice to the narratives that disabled people want to read and to ensure that our stories are told to us by us. These are tales that challenge the tired tropes of disability and the problematic reduction of disability in order to explore our complexity as disabled people. Nothing Without Us offers a space where we can hear disabled stories that don’t have to explain themselves to an assumed abled audience, but rather recognizes that we need stories for ourselves too, stories that many of us have searched for.

to discover more about Jennifer Lee Rossman, go to http://jenniferleerossman.blogspot.com

To find out more about Nothing Without Us, go to https://nothingwithoutusanthology.wordpress.com or Renaissance’s website at https://renaissance-107765.square.site/product/nothing-without-us/117?cp=true&sa=false&sbp=false&q=false

Queer Crips on Air Episode 1: Medical Encounters

Queer Crips on Air Episode 1: Medical Encounters

Shannon Avery and Derek Newman-Stille take to the airways for their first show of Queer Crips on Air on Trent Radio 92.7 FM in Peterborough. We discuss the problematic medical care that is often received by disabled people and queer people (especially the Trans population), drawing on personal experiences and the experiences of others in our community. We raise critical questions about ideas and assumptions behind our care and critique the veil of medical objectivity. We delve into ways that our communities (Queer, Trans, Disabled) come together to share knowledge and experiences to help each other navigate the medical system and to bring each other supports. We discuss the need for critical changes and consultations with our communities by medical practitioners and the need for medical staff to get to know us.

Click on the poster below for our first episode. Make sure to allow time for buffering.

Click here to hear our show

Shannon Avery (They/Them) is anonbinary, Queer, Disabled (Crip) person. They are completing their undergraduate degree at Trent University, where they also work in campus tours and in the Champlain College Office. Shannon is completing their degree in English Literature. They are new to radio and are already fabulous and brilliant at it (this last bit is added by Derek because they are overwhelmed with what an amazing job Shannon is doing on their first show!!!).

Derek Newman-Stille (They/Them) is a Nonbinary (Enby), Queer, Disabled (Crip) person. They are completing their PhD exploring the representation of disability in speculative fiction literature. They teach at Trent University and have just published two anthologies – Over the Rainbow: Folk and Fairy Tales from the Margins (Exile) and We Shall Be Monsters (Renaissance Press).

We are incredibly thankful to Trent Radio for their support and their broadcast services. For people in the Peterborough, Ontario region, you can tune in to Trent Radio at 92.7 FM and for people outside of Peterborough, you can live stream the amazing and brilliant content on Trent Radio at trentradio.ca:8800/hi-fi.m3u . You can find out about Trent Radio at www.trentradio.ca

“Truths”, Fantasies, And The Stories We Are Told About Ourselves

“Truths”, Fantasies, And The Stories We Are Told About Ourselves

By Derek Newman-Stille

 

We disabled people are asked to tell our stories over and over again. We are asked to narrate our bodies and the difference of our bodies again and again. When we meet with doctors we have to tell the stories of our bodies (and often have to retell them until they fit the medical model that doctors need to understand our bodies). The same happens when we meet specialists. We need to narrate our bodies to employers to get accommodations, to schools to get access to resources, to funding agencies, to government officials when we need additional supports, and, yes, even to strangers on the street.

 

I recently had someone follow me down the street for multiple blocks asking me what was “wrong” with my body, asking me to tell him the story of my body. This was happening despite the fact that I was having a conversation with my friends that this guy was interrupting. He believed his own demand to hear the story of my body overrode the conversations I was already having. I told him that I didn’t want to tell the story of my body to a stranger, and like most people who I tell this to, he became enraged, told me that I was rude and that he was just curious, and then he said “besides, I am a PSW, so I am an expert on people like you.”

 

This is not a unique experience. It happens regularly. I am frequently bombarded with questions about my body by strangers, and many of those strangers (who have no disabilities of their own) then believe themselves to be experts on my body and tell me that I don’t really need to use my rollator or my cane, that I can cure my disability with crystals or yoga or positive thinking or walks in the woods or “blu-ray healing”. The narratives people place on my body abound and they come from a society that tells able-bodied people that disabilities are the purview of the public, that our stories are open to their interpretations and their adaptations.

 

Often the stories of our bodies preclude us even being part of them. Frequently, when our bodies are written about by “specialists”, their stories of our bodies continue on without our own narration, telling stories about us. This seems like it should be something unusual, to have our stories told by other people, but we need those stories told by people who are “specialists” on our bodies in order to get access to many of the accommodations we need. Our stories become papered entities – accommodation letters to professors, medical notes, specialist reports. Our stories are told and retold and we are not considered experts on our own stories. In fact, we are considered inherently biased and our stories are rendered as problematic, fictitious, and yes, even fantastic. 

 

This rendering of our own stories as fictional extends into publishing about disabled bodies, where, frequently, our actual stories about our disabled bodies – told from our own experiences – are considered less authentic than stories told about disabled people by able-bodied others. Like many disabled authors, I have been told that my factual rendering of my disability’s story is not believable, that it doesn’t match with what audiences want or believe, or that it doesn’t ‘ring true’ for a disabled narrative. Publishers and editors are much more interested in the papered story about disability, the one constructed through things they have read before – the story full of tropes about disability. This isn’t surprising (even though it should be) because disabled stories are often inauthenticated, are often rendered as less worthwhile than the people who claim to be experts on our bodies. We are accustomed to this. We get it from doctors, politicians, and others who consider themselves to be experts who render our stories for others, who erase the personal in order to create a fantasy about disability. 

 

So, with all of the fantasies already created about disability, the fictions that are constructed around our bodies because these fictions are considered more realistic than our own tales, are there possibilities for us to reshape those fantasies? Can we assert our own tales through the unbelievable, the magical, the imaginative, and use these stories to reshape the way that our bodies are treated as fantasies? 

 

There is a huge potential in fantasy for operating on the level of imagination, for operating in the realm of the un-real. We disabled people have so often been told that our stories need to be retold by specialists in order for them to be considered real that there is a liberation in telling a story that we don’t have to be x-rayed, MRIed, assessed, and narrated before it can be considered true.

 

Abled people are constantly believing things about disability because they have been told that imaginations about disability are “true”, so there is a power in challenging thoughts about disability at the imaginative level, at the level of possibility, and therefore to introduce new possibilities for thinking about disability, for imagining us.

 

Although I have heard from fellow disabled people that what we need is real change, often we forget about the power of imagination as an agent of change. We create change by imagining new possibilities, by thinking up new alternatives, and by challenging what we think of as “truths” because frequently when something is portrayed as “truth”, it is stagnated, constructed as unchanging and unchallengeable. Fantasy stories about disability open up disability itself to imagination, let disability as a subject be something that is fluid, changeable, reimaginable, and adaptable. 

 

As disabled people, we already live in a world of fantasy. We live in a world that pretends that we are invisible, in a world where words – when wielded by policy-makers – can magically take away everything we need. 

 

We have the power to use those fantasies to remake our world, to reforge it as one that includes us, and, not only that, but represents us, and even, dare I say, celebrates us?

Why We Need Crip Fic – A Love Story to Nothing Without Us

Why We Need Crip Fic – A Love Story to Nothing Without Us

By Derek Newman-Stille

As disabled people, we are written about constantly. We are shaped by texts. We have been written about by our doctors, by our schools, by our therapists, by our politicians…. We have been layered and layered with texts, and these texts are generally written by people who are NOT US – people who consider themselves experts on our experiences, who tell us that they have knowledge that is beyond our knowledge of our own bodies and selves. Indeed, we even need to rely on these experts to gain access to spaces and resources as disabled people. We need governmental policies to give us rights we should have as citizens, we need medical doctors’ reports to be considered disabled in the first place, and we need accommodation forms to get access to school resources. We are not only turned into text, we are made to DEPEND on text by other people.

Even fiction is often ABOUT US, written by people who are abled and trying to capture our experiences without talking to us. We get turned into tropes, into stories, into fictions… And we get told that these fictions represent us, and we get told by editors or publishers that our stories don’t “feel authentic” because they don’t match the tropes – they aren’t inspirational, they aren’t about overcoming, they aren’t about suffering, they aren’t about being lesser. Our stories are frequently rejected because the tropes are far more powerful than our voices.

That’s why I am excited about the collection Nothing Without Us – because it centres our voices. It is a collection of Crip voices, disabled voices, about us expressing ourselves and not being talked about. It is edited by two disabled people – Cait Gordon and Talia Johnson. It is published by a disabled publisher. And the way it is shaping up, it looks like it will be an anthology that speaks back to all of those narratives, texts, and stories imposed on us disabled folks.

So, what does it mean to write back? What does it mean for us to speak our own stories, to tell our own tales, to speak from the Crip body and mind?

I use the term “Crip” intentionally. I use it the same way as I use “Queer”, to speak back to a system that has sought to use these words to oppress us. “Crip” is a way of reclaiming the language… but it isn’t just another word for “disabled”. It is an intentional response to attempts to pacify us through language. It is a resistant word, a word made to disrupt, to challenge, and to speak back. It is meant to make people gasp and then to think about why that word is used. I call myself a Queer Crip because I don’t want to conform. I don’t want to be pacified by words because so many of our systems are based on pacifying us with words. Words are so often used to contain us, to confine us, and to render us Other. We wrestle with words because they are used to oppress. So, what happens when we share that wrestling with words? What happens when we tell our own stories and tell the world that OUR WORDS HAVE POWER?

Nothing Without Us is a complicated engagement with our words. It is shaping up to be an anthology that lets us, as disabled people, resist the confinements of hegemonic texts. It engages with realism because we have had so many narratives written about us that claim truth… but it also engages with imaginatory texts, with speculative texts. It recognizes the need for there to be an exploration of the imagination, because our rules, policies, and ideas about disability are shaped in the imagination, in the minds that ponder what disability means.

Nothing Without Us is a multi-genre text because, as disabled people, our lives don’t easily fit into one genre and we bristle at boxes or confines that try to imagine us as only one thing.

Nothing Without Us is a resistant text, a set of stories that provide a counter-narrative to narratives about us. It is about us telling our own stories and the power of our own stories to tear apart the stories and diagnoses and polices that have been written about us.

To discover more about Nothing Without Us, whose Kickstarter is happening right now, check out https://nothingwithoutusanthology.wordpress.com and support the kickstarter at https://www.kickstarter.com/projects/renaissancebp/nothing-without-us?ref=ksr_email_user_new_friend_project&fbclid=IwAR2-S8WRjKGuogbKi6aXSo6kvcUcYiQu4KXPW4Z2o9T8bpKfz-szxHJR1KA

Disability, Deafness, Ageing, Queerness, and Other Complicated Embodiments