Tag Archives: Editorials

“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?

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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.

Fictional Portrayals of Disability- Why Do They Matter?

By Derek Newman-Stille

I frequently get asked why I look at portrayals of disability in fiction. I am often told that I should look at something “real” and “substantial” like policy. 
I find this an interesting assumption. People frequently assumed that marginalized identities are going to be best changed through policy and politics, but policies are shaped by social consciousness, by the realm of ideas. Fiction is about the realm of the possible, the realm of ideas, and it is ideas that make changes more than policy. Policies won’t change social attitudes unless there is a social receptiveness to these changes. 
I frequently think about this in terms of requirements for accommodation in building codes, and the notion that undergirds this: “minimal compliance”. Minimal compliance with building accessibility codes mean that people can continue to view disability as a PROBLEM, as an issue that doesn’t need to be accommodated, but instead needs to be appeased. This means that buildings often have spaces that don’t really fit disabled bodies, but instead fit codes. Disabled bodies are still viewed as non-viable in these spaces, perceived as a barrier to an easy build rather than a necessary inclusion. Rather than viewing us as needed and essential participants in these spaces, we are viewed as inconvenient obstructions. 
Fiction provides a space for radical rethinkings of our social spaces, challenges to a system that is content with our erasure. Fiction invites society to radically re-imagine our perceptual frameworks, our entrenched beliefs and the things that we consider self-evident. 
Yet, our fiction is produced from the moulds that have been created previously, from our social frameworks and from our existing taken-for-granted understandings of the world. Our fiction, and our ways of imagining disability are fundamentally problematic, limited, and actively damaging. They reproduce ideologies that push disabled bodies further to the fringes and influence policies that don’t really include disabled bodies and often actively exclude us. 
Our fiction, our imaginations, need an infusion of something new and potent, something that radically reconsiders not just literary tropes, but imaginative possibilities. We need a radical reconception of the way that disability occupies our imagination, challenge images that reduce us, and open up new possibilities for discourse.
Critical explorations of popular culture, literature, art, imagination, are not just things in the realm of academia. We should all be radically reconsidering our portrayals, critically questioning them, discussing them, and producing something new.

Able-Bodied People Speaking ABOUT Disabled People

By Derek Newman-Stille

Far too frequently, able-bodied people feel that they have a place to talk about disabled people. They use different justifications for this act of narrating our bodies to us, but the bottom line is always the same. There is an assumption that our bodies are open to public debate, that we are resigned to expertiseism about our bodies not only by medical practitioners, but anyone who feels that they have a stake in narrating us. 
I see this most commonly when it comes to medical practitioners, whose power to narrate our bodies is so strong that we have to depend on their assessment of our bodies to get access to basic accommodations. Our own narration of our bodies is never considered enough to guarantee that we will acquire everything we need. In university I observed this with the accommodation letters that I was forced to bring to my professors. My own narration of my bodily needs was not enough to be considered appropriate, so I needed to bring a letter detailing my needs in order to get them. Catherine Duchastel de Montrouge brought up the need for accommodation letters during her recent talk at the Canadian Disability Studies Association and discussed the fetishization of the accommodation letter for our post-secondary education system. Duchastel de Montrouge talked about being told by professors that she shouldn’t need accommodations, that she would be denied accommodations because the “professor knows best”, and the suspicion of accommodation letters by most professors. When talking to her, I likened the accommodation letter to a passport, allowing us into a space that we are considered unwelcome in and a space where we can have our rights withdrawn at any time. We depend on these accommodation letters for access to education, but they are dependent on the physician writing them, a university office drafting their final copy, and a professor deciding to abide by these letters. 
This is, of course only one example of the need for physician letters, since disabled people also need the word of a physician to access disabled parking, be able to use accessible seats on aeroplanes, have access to disability accommodation, and in order to access government support funds for people with disabilities. 
I have frequently had people narrate my body to me after seeing me walking with a cane. I have been told “if you work hard enough, you won’t have to use that any more”, been asked “why do you think you need a cane?”, and been told that I “look normal enough”. These narrations happened by strangers, which frequently occurs for disabled people. Able-bodied people have been told through their media that they have a right to narrate disabled people’s bodies to them, to tell us how to live our lives, how to be disabled in this world, and how we should act to make them more comfortable with our presence on the landscape. 
A friend recently came back from a writers’ conference where she was the only disabled person on a panel about writing disability. It should be abundantly clear to everyone that disability is generally not written of well in our literature and popular culture, so I am amazed at how little people want to listen to disabled people give input on their bodies and how to write them well. She noted that all of the able-bodied people on the panel tried to tell her how disabled characters should be written, replicating tropes about disability. They even waved their hand at her to say “people like you” when talking about people with disabilities. 
I have experienced similar issues when able-bodied people have asked me to read their stories about people with disabilities because they generally respond to my reminders that the character is presented problematically by getting angry and saying things like “that is how I need the character to be for the novel to work” or “but it’s not really about their disability, its about what it means for their society” or “but I saw a meme on facebook that said this” or “I talked to someone who was disabled and they said it was okay to write people like them this way” or “but I read a book on it by a doctor and this is what they said” or “but I tried to make this character a nice person, isn’t that enough?” This is one of the reasons I have become more hesitant to read people’s manuscripts, especially when they portray disabled people. I know that little will shift when I ask them for more, ask them to do better, or ask them to listen, pay attention, and understand. 
Able bodied writers and media consumers seem resistant to hearing back from the people they write about. Our disabled voices only complicate the easy symbolism that they write onto our bodies, our three-dimensionality only complicates the simple one-dimensional characters they want to write.  We make it hard to write us when we speak up.
I think that bears repeating: We make it hard to write us when we speak up.
I think this could be a call to action. A call to able-bodied people to actually listen to us, a call for convention organizers to have disabled people speaking about disabled characters, and a reminder of the call “nothing about us without us”.