Tag Archives: silencing

“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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Storied Recovery

Storied Recovery

A review of Monique Bedard (Aura)’s “Constellations of Stars” in (Don’t) Call Me Crazy: 33 Voices Start the Conversation About Mental Health Edited by Kelly Jensen (Algonquin, 2018)

By Derek Newman-Stille

Located in a collection of stories about mental health called (Don’t) Call Me Crazy, Monique Bedard (Aura)’s poem “Constellations of Stars” reveals the way that mental health, identity, and landscape can interact with each other and speak to each other. Society pretends that mental health happens in isolation, but Bedard, a Haudenosaunee person illustrates the deep connection between colonial violence and what is coded as “mental health” issues.

Bedard uses poetry and word play to explore the relationship between body, land, identity, and the notion of storied existence. She begins by revealing to her reader that her body is a map of scars that tells a story. Her body is implicated throughout the poem, woven through her words and experiences. This is an emBODied work.

“Constellations of Stars” weaves together Bedard’s own narrative and the narrative of indigenous people in general, illustrating that there are shared experiences and that she feels the pain of colonial violence both from the people that came before her and in the violence, erasure, and loss of land that she has experienced. Bedard’s voice is a multiplicity in one, a shared truth. She explores the theft of indigenous lands, the pain of separation in residential schools, the theft of indigenous children by people who tried to erase their culture, missing and murdered aboriginal women, the erasure of languages, culture, and history. Her story is her own… but it is also larger than a single story.

Bedard explores the idea of “witness” – the power of the act of speaking about things that are being erased, giving voice to situations that were silenced, and enacting truths to counter colonial lies.

To discover more about Monique Bedard (Aura), visit her website at https://www.moniqueaura.com

To find out more about (Don’t) Call Me Crazy, visit https://www.workman.com/products/dont-call-me-crazy

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.