Tag Archives: Editorials

#UHateDisabledPeople

#UHateDisabledPeople

By Derek Newman-Stille

Twitter may seem like a strange place to create community with its short word counts and inclination toward simple answers rather than complex explorations, but it has become a space for disabled people to share our experiences with one another and to share experiences that we may have felt were ours alone. Disabled stories by disabled people are rare. Frequently publishers would prefer stories ABOUT disability written by abled people rather than narratives about disability by those of us in the disabled community. Yet we know there is a need for us to share our stories and to use our stories to advocate for change.

Frequently when people say that we need our stories to advocate for change, the assumption is that we are writing for an abled audience rather than a disabled one, however, one of our biggest tools for advocacy is our community. We have been able to achieve change through uniting as a disabled community and collectively engaging in activism.

Often we are expected to fight for disability justice quietly and accept what the abled majority tells us we are due, however, that hasn’t been effective in the past. We have never had rights “given” to us by a “compassionate” abled majority, we have always had to fight for our rights with committees, with demonstrations like climbing up the stairs of congress, and through legal action by disabled people. Being quiet has never served us, so we need to speak up and we need to make change loudly as a community. Disability justice comes from disabled anger.

Imani Barbarin has been a key figure involved in Disabled Twitter and has been devoted to disability justice through multiple fora including the Twitter hashtag #UHateDisabledPeople. Barbarin is a conversation starter, coining various twitter hashtags in order to begin conversations between disabled people and evoke change. As a disabled black woman, her work is intersectional, drawing on disability studies, but also a critical race perspective, and a feminist outlook. Barbarin has been a key figure in exploring disability representation, disability culture, and inclusion.

Barbarin’s hashtag #UHateDisabledPeople is in-your-face, powerful, and expresses the NEED for change. She expresses the idea that acts of ableism ARE acts of hatred toward disabled people. This hashtag has allowed people to come together in expressing our common experiences of ableism with a lot of responses by the community stating “I’ve experienced the same thing”

Some key tweets that have come up are:

Dr. Laura Dorwart points out in her Tweet “If you hear that a violent crime has been committed against a disabled person and your first thought is that the loved one who did it must have a good reason or deserve sympathy, #UHateDisabled People.

Dr. Dorwart points out that people often dismiss acts of murder against disabled people as “for the best” or “an act of love”, thus excusing the family members who murdered them. Frequently this is used as an excuse to get people out of murder charges when the victim has been a disabled person.

Gregory Mansfield points out further serious crimes against the disabled population in his tween “#UHateDisabledPeople if you believe that sterilization, insitutionalization or filicide of disabled people are explainable, acceptable or justifiable.”

Yet these tweets don’t only express radical acts of violence against disabled people, they also illustrate everyday ableisms and the way that the language of ableism is entrenched in every aspect of our society.

Charles Hughes points out that ableist society can only view us as “good cripples” when we are being “inspirational”; “If you love us when we’re adorable or ‘inspirational,’ but try to shut us down when we’re assertive or uncompromising, then #UHateDisabledPeople”. Hughes brings attention to the common trope of the “good cripple”, and the notion in ableist society that disabled people constantly need to be grateful for even the basics of accommodation or support afforded in our society.

Eli points out in their tweet issues around the unemployment of disabled people and the fact that it results from ableism and the entrenched belief that disabled people can’t work while ablist people still say that we disabled people should “get a job”. Eli states “When you think disabled people should get a job but you won’t hire us #UHateDisabledPeople” Eli illustrates the contradictory messages from our ableist society that we SHOULD work, but simultaneously that we CAN’T work.

Imani Barbarin observes the entrenched idea that disabled people don’t need to leave their houses and therefore don’t need to be accommodated by public spaces or public services when she states in her tweet “If you can’t think of a reason for disabled people to leave their house, other than to go to the hospital, UHateDisabledPeople”. This is a key issue since Barbarin and others on Twitter have been recently talking about rideshare and other services denying access to disabled people and then leaving us bad reviews because those services refused to accommodate our needs as disabled people (for example, denying access to people with service dogs, refusing the delivery of food to people with mobility disabilities).

Several people have brought attention to the assumption by the public that disabled people are “faking it”. For example, “Lilo the Autistic Queer” states in their tweet “if you harass strangers because you don’t think they should park in the accessible spot and/or sit in the accessible section on the bus/train #UHate Disabled People.” “Lilo the Autistic Queer” observes that people often act as though if they can’t immediately see our disabilities then we must be “faking it”.

Catherine Paul elaborates on this entrenched belief that disabled people are faking it, stating “If when you see a chronically ill person having a good time, you think they must be faking their illness, #UHateDisabledPeople.” The social assumption that we disabled people are “faking it” means that a huge amount of money is wasted on investigations into our claims of disability and often results in huge amounts of money that should be allocated to disability supports instead being allocated to investigations into our disabilities. So strong is this entrenched belief that disabled people are “faking it”, that people on the streets frequently believe they have a role in telling us they don’t believe we have disabilities or attempting to kick our canes out from under us or push our mobility devices. Indeed, Kaitlyn @BlytheByName points out the experience of purposely being bumped into in this tweet: “When you purposefully bump into me while I’m walking with my cane to test if I ‘really need it’ UHateDisabledPeople”.

Walela Nehanda illustrates how often disabled people are assumed to be “faking” their disability or trying to “scam” or “cheat” the system by saying “If you beleive disabled people are ‘faking’ our conditions because our disabilities don’t present in a way you’re accustomed to or because you think we are trying to ‘scam’ people or ‘cheat’ the system #UHateDisabledPeople”. Frequently abled people assume that they should be able to immediately look at us and then diagnose us with a glance and dismiss us as non-disabled when they can’t see our disabilities at a glance.

Not surprisingly, abled responses have varied from dismissing disabled people’s experiences to threats and doxxing.

“Diary of a Disabled Person” states “Okay, now I’m getting actual abuse from people over #UHateDisabledPeople, mocking my assumed lack of intelligence and inability to speak. Is it going to stop me? No fucking way. Is it going to get you reported? Damn right it will. Each and every one of you should be ashamed”. “Diary of a Disabled Person” is not the only person to receive threats, comments about their intelligence, and comments about their right to speak. This is happening across the hashtag.

“Dame DuhLaurien” dismisses the experiences of disabled people by saying “I think ‘hate’ is an awful strong word for the kinds fo things I’m seeing complained about in the #UHateDisabledPeople tweets but regardless cant we get #ULoveDisabledPeople.” In this, “Dame DuhLaurien dismisses the experiences of disabled people as minor, even though many of these tweets involve discussions of physical violence, exclusions of rights, and outright murder (as illustrated above). “Dame DuhLaurien” calls these experiences “complaining”, reinforcing the idea that disabled people shouldn’t express our frustration with everyday ableisms. “Was God In The O.R.” responds to “Dame DuhLaurien” by saying “Because y’all don’t love disabled people Lauren. Disabled people are denied access to food delivery, rideshare services, and public transportation, DAILY. And when we get on the internet to vent amongst ourselves, we’re made fun of, threatened, and doxxed. #UHateDisabledPeople”. “Was God in The O.R.” points out that people often use the words “we love disabled people” while continuing to perpetuate our oppression on a daily basis, illustrating that we, as disabled people feel the constant hate from an ableist society.

“TheDisabledEnthusiast” responds to “Dame DuhLaurien”‘s post with “If you think disabled people have to call out ableism in a way that’s more comfortable to you, #UHateDisabledPeople. You didn’t even bother to understand or sit with the meaning of the hashtag before you decided you were too uncomfortable and needed to shut it down.” “TheDisabledEnthusiast” points out the snap response that abled people have when being called out for their ableism and the instant response of tone policing disabled people rather than listening and thinking about what we are trying to express.

Imani Barbarin “Crutches&Spice” responds to all of the violence against the #UHateDisabledPeople hashtag by saying “people can troll my hashtags all they want. 1. They’re contributing to the numbers. 2. They’re proving my point. 3. The people who didn’t believe us can no longer ignore how widespread the problem is. Thank you for your time”. Barbarin powerfully points out that all the people who are denying the violence against disabled people only need to look at the violent responses to our tweets in order to see the entrenched ableism against us. Yet, she also points out the power of disabled twitter by observing that when our voices come together and we express the violence we’ve experienced – even if it is only by re-tweeting or liking a post – we are illustrating the common violence that we all experience.

Hashtags like those created by Imani Barbarin illustrate the power of our collective voice as disabled people. They are a way of creating community and collectively pouring out all of the violence and hatred we have experienced. Sharing a Twitter thread like this is confirmational for us, illustrating that we are not alone in our experiences. #UHateDisabled people is a strong hashtag because strong language NEEDS to be used. We are experiencing systemic violence and are constantly told to be quiet and accept the violence we are experiencing every day. Hashtags like this illustrate the power of collective storytelling, the power of sharing our narratives together and giving voice to everything that has happened to us. They create community as they advocate for change. As Barbarin states “The people who didn’t believe us can no longer ignore how widespread the problem is”.

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.

“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

What Is It Like To Be Represented in Film, Television, and Books?

What is it like to be represented in film, television, and books?

By Derek Newman-Stille

When I see myself in a character, when I encounter a character who is like me – queer or disabled (or maybe even both like I am?)… but written in a way that represents those identities, not filled with tropes meant to reduce us to symbols… I feel a sense of ecstasy. My heart starts to race. I start to connect with the character, start to feel their passions.

And I think to myself – is this what it is like for straight, able-bodied, cis, white people to read?

I imagine what it would be like to live in a world where one is saturated with representations of oneself…. where every magazine, every book, every film, every television show is like a mirror.

This is what we under-represented people feel when we encounter representation of ourselves, when we finally see something in our media that could be made to reflect (even slightly) ourselves. Suddenly our world is opened up to potentials. When I see people like me represented, I finally feel a sense of belonging, a sense of really being part of the world and not it’s dirty little secret that no one wants to talk about. I feel a sense of community, a welcome, an invitation to participate, to be part of the world.

I feel like I can exist.

I wonder if this is something that other under-represented people feel when they see themselves reflected. Do they also feel like a world of possibilities has opened up? Do they get the same heart-racing, open-eyed, pausing breath sense of excitement and wonder? Do they feel that weird, uncanny, tingling magic through their bodies at the moment that they see the potential for representation, the possibility, the cusp of belonging? Do they feel the clouds of isolation break? Do they feel the sense of excitement that for once our stories are THERE are HERE… that our stories are shaping something, carving out a space for us, a tiny cave in a wall of ignorance and oppression?

Do others sigh with relief that the character that we are told is like us doesn’t end up being a shallow reflection of society’s bigotry? Do they bite their nails as they see the words “And he/she was Queer/Disabled/Trans/Indigenous/Black/Of Colour/An Immigrant/Fat” and wonder if this is going to the the time that someone sees deeper than the portrait society paints of us and see that we are standing right behind that portrait, trying to push it aside so we can EXIST?

I crave representation. I crave good representation. I crave deeper thought about what people like us are like. I crave creators like us creating characters like us. I want… I need to feel like our marginalized stories are out there.

And I know what happens whenever I say I want marginalized voices represented. I know I will hear from people some suggestions of “have you seen this one show that was on for half a season that had a character who was Queer?” and “before the author kills off this character in this book, you should see how much like you they are” and “there are so many marginalized people represented out there that it is really the straight, white, able-bodied, cis man who is underrepresented”. I know I will hear them because it happens every time. I know I will hear them because people in positions of privilege always want to believe that token representations are enough. They want to believe that if they just show us ONE image, we will go back to complacency… that we won’t still crave MORE. They want to share that one representation of us because they enjoyed it. Because it was new, innovative, different. But if so many people like our representation, like our stories, why aren’t we given much of a platform? Why aren’t there more representations of us?

It feels like we are always being told “isn’t that enough?” Well, no, it’s not enough. We still feel that sense of isolation when we are surrounded by an ocean of representations of the straight, white, able-bodied, cis man even when we can see that one speck of a life raft of representation out on that ocean. That one, precarious, uncertain, singular representation isn’t enough to hold onto in a world where we are drowning in representations of people in power, people who make decisions about our lives.

We crave representation because we not only WANT it…. we NEED it. Because it is rare, because it is precarious, but mostly because it makes us feel a sense of possibility and wonder, a sense of belonging.

It’s Time to Stop Portraying the Lives of Disabled Children as Tragic for Parents.

It’s Time to Stop Portraying the Lives of Disabled Children as Tragic for Parents.
By Derek Newman-Stille

I just finished watching the Netflix show “Atypical”, which seeks to portray the life of a family with an 18 year old autistic boy as one of its members. The show bills itself as a comedy and seeks to portray this autistic young man, Sam’s, attempts at finding a girlfriend. It is another show that cashes in on portraying disabled lives as an alternation of tragedy and comedy, counting on its viewers to alternate between finding Sam’s antics humorous, while simultaneously portraying his life and the lives of those around him as tragic. 

Even though the show uses the tagline “normal is overrated”, it in fact reifies normalcy, putting the audience in the position of viewing Sam’s life as hilarious (even positioning students making fun of Sam for his neuro-atypical behaviour, while trying to play this scene up for laughs by the audience). It portrays Sam’s friends and girlfriend as people who have to constantly advocate for him, at one point even having Sam’s sister, Casey, tell his girlfriend that she shouldn’t get too close to him because then he will depend on her and she won’t be able to leave him (a sentiment that he then repeats later). These sentiments reflects and magnifies the already existing message that disabled lives are a burden on those around them – the image that we, disabled people are perpetually defined and shaped through the notion of dependency. Despite the fact that Sam is a competent, intelligent, capable person, he has to depend on his younger sister to give him lunch money at a certain point in the day. This is never explained and seems to be an uncomfortable fit with Sam’s capacity in every other part of the show. Yet, the writers seem unable to give Sam agency. 

The most dangerous part of the messaging around this show comes from the portrayal of Sam’s interactions with his parents. His mother, Elsa, defines herself through her relationship with her son, taking on the identity of “parent of an autistic child” over everything else. The show focusses on the “sacrifices” she, her husband, and her daughter have to go through as part of having an autistic child. Parenting an autistic child is portrayed as tragedy, and the show focusses on the damage that has been done to Elsa’s relationship to her husband, justifies Sam’s father, Doug’s abandonment of their child because it is “too much” for most parents, and portrays Casey as the ignored child because her parents didn’t ever have time to care for her because their lives had to revolve around Sam. Sam is portrayed as a autistic bomb dropped on his family with continuing damaging results. 

I have heard from a few people about this show that they admire the show’s bravery in portraying the mother of an autistic child needing to take time for herself, but I would argue that that isn’t something that is happening in this show. This isn’t about balancing caring work with personal time, it is about her feelings of having not had a life because an autistic child has damaged it. I think it is important to acknowledge the need for any parent, and particularly mothers who end up doing most of the caring work in their families, to have time for their personal growth and time for self care. However, the way to do that is not to portray parenting a disabled person as a perpetual tragedy. Although there is no doubt that the lives of mothers are shaped by a system that seeks to oppress them, it is my perspective that their liberation should not come at the expense of people with disabilities and that there is a way to liberate both groups without inherently portraying one type of life as tragic for another. There are very real social consequences to this portrayal particularly since government and private research groups continue to search for genes or conditions during pregnancy that can cause congenital disabilities and then suggest that any child that could have been born with a disability be aborted. Our society already has difficulty imagining disabled lives as viable, but the additional constant messaging that disabled lives are tragic for parents tends to encourage parents to not want disabled children. This has direct repercussions for the lives of disabled children, creating a situation where it is difficult to find people who are willing to parent disabled children.
Of course, this problem is magnified by the fact that there are relatively few portrayals of parents of disabled children who live happy lives. Our stories tend to focus on disability as tragedy rather than disability as benefit, so the overwhelming amount of portrayals of disabled lives as tragic tend to override any other possible portrayals or even the likelihood of our society viewing disabled people as anything other than a burden. We can see this in our governments, who tend to look at disability as an inherent negative, frequently preventing the immigration of disabled people, discussing the economic deficit of disabled people, and generally failing to provide accessible spaces because disabled people aren’t seen as beneficial enough to be permitted access to all spaces. 
Sam’s narrative is one shaped by treatment, learning from his therapist and those around him how to be neurotypical. His mother attends a support group that at one moment is about sharing horror stories about having a disabled child and the next moment talks about person-first narratives and NOT describing disabled people as tragedy. This sort of mixed messaging is not entirely without grounds in a lot of organizations, because frequently organizations will focus on language around disability while simultaneously encouraging a view of disabled people as dependent and making decisions without the involvement of disabled people. There is a cadence of these meetings that reflects organizations like Autism Speaks, who tend to exclude the voices of autistic people, while elevating those of parents, also focussing on Autism as something that should be treated and eliminated rather than focussing on providing accessible spaces for autistic people, tends to raise money for attempts to “cure” autism rather than recognizing it as an important part of neurodiversity. Many of the messaging boards attached to Autism Speaks tend to provide a space for parents to talk about the difficulties in raising an autistic child. This approach mirrors some of the approaches taken in Elsa’s support group. This type of approach contrasts with groups like the Autistic Self Advocacy Network (ASAN), an organization run by and for autistic people that focusses on disability rights advocacy and provide a space for neurodiversity. The Autistic Self Advocacy Network focusses on the notion of “nothing about us without us”, and this approach would have been something beneficial for the creators, writers, and those involved in the production of “Atypical” to consider.

Spatializing Disability and Considering Belonging 

By Derek Newman-Stille

Access. Access is a central issue for disability since we live in a society that only creates space for able bodies. It assumes a singular bodily ontology and our physical spaces are moulded to conform to that single body. Those who don’t fit the mould are expected to make our bodies fit, to modify our bodies, movements, interactions to fit with a singular interpretation of space. 

In this construction, we are made exiles in our own homes, in our own cities, towns, and villages. We are expected to accept our position of non-belonging in our own spaces, assumed to be comfortable with all of the responsibilities of citizenship, but without the basics of belonging that citizenship claims to offer. We are imagined to be content on the fringes, margins, and edges, those few spaces that accommodate our bodies and provide us with access. 

So what does this mean for our notions of home? How do we disabled bodies fit in to a nation state that has geographic boundaries but makes these geographies inaccessible to us? How do we gain access?

Perhaps the disabled body provides us with a space for re-thinking belonging, for critically questioning how we can occupy and take up space. 

Our bodies are perceived as awkwardly occupying space. We notice this through the states we evoke, the way that we are both hypervisible (stared at) in public spaces and simultaneously invisible (particularly when we need help or when city planners develop architecture). Yet, maybe this positions us as bodies that are able to CHALLENGE ideas of belonging that exclude, maybe this positions is as radical bodies in a space that seeks to pacify through the rhetoric of normalcy (that is constructed only to make bodies and identities not belong). 

Maybe we need to consider belonging and citizenship trough the lens of access. Maybe we need to think about exclusion and barriers to belonging when we think about how we occupy or are made unable to occupy our spaces.