Category Archives: Interviews

An Interview of Ulla Kriebernegg About Ageing Narratives

By Derek Newman-Stille

Ulla Kriebernegg is an Associate Professor at the Centre for Inter-American Studies at the University of Graz, Austria. Dr. Kriebernegg’s research primarily focusses on Inter-American literary and cultural studies, with attention to Jewish-American Literature and Ageing Studies. She is the chair of the European Network of Ageing Studies and an executive board member for the International Association of Inter-American Studies.

In this episode of Dis(Abled) Embodiment, Dr. Kriebernegg and I talk about Ageing Studies, with a particular focus on the literary and cultural representation of ageing. We examine the way that ageing is expressed in our cultural imagination, particularly looking at the anxieties, uncertainties, and hopes that get attached to images of Long Term Care. We explore narratives of care and responses to ideas of care, examining connecting ideas of gender, sexuality, and difference. We talk about differences in the way that long term care occurs in different nationalities and the different imaginative possibilities that exist for re-thinking long term care.

In addition, we examine Care Home Stories: Ageing, Disability, and Long Term Residential Care co-edited by Dr. Kriebernegg and Dr. Sally Chivers. Care Home Stories, published by Columbia University Press, is a collection of essays that examines the stereotypes and assumptions that exist around long term care and offers new narrative possibilities that allow readers to re-examine ideas around long term care.

Please allow a few moments for the video to load.

Thank you again to Dr. Kriebernegg for taking the time to do an interview with me here on Dis(Abled) Embodiment.

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An Interview with Em Glasspool about Arts Ability: Taking the Stage

By Derek Newman-Stille

 

Today, I interview Em Glasspool about Dis Arts (disability arts) in the city of Peterborough, exploring the upcoming Arts Ability: Taking the Stage performance, which features the work of multiple Peterborough-area artists in the disabled community.

 

Em Glasspool is a performer in the Peterborough community and runs Mysterious Entity Theatre, a company that brings attention to gender diversity, bodily diversity, and neurodiversity.

 

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You can find out more about Arts Ability: Taking the Stage at https://www.facebook.com/events/1973700966203677/

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Interview with Nicolette Barischoff

Interview with Nicolette Barischoff

By Derek Newman-Stille

nicolette

I was able to work with the wonderful Nicolette Barischoff when we were both included in the collection Accessing the Future (edited by Kathryn Allan and Djibril al-Ayad) a few years ago and just recently had the pleasure of working with Nicolette again when she edited my personal narrative submission as part of Uncanny Magazine’s Disabled People Destroy Science Fiction. As always, Nicolette had a plethora of ideas and I realized I had to share some of her insights with readers here on Dis(Abled) Embodiment. I want to thank Nicolette for joining us here and taking the time to do an interview.

 

Q: To start our interview off, could you tell readers a little bit about yourself?

 

Nicolette Barischoff: Well, I’m a speculative fiction writer. That’s probably the least visible and most important thing I do.  I’m also a chronically naked performance artist and art model. That’s a big part of my activism. It’s very important to me that we get people used to seeing many different types of bodies, and that we normalize the sight of visibly disabled bodies in particular. I have Spastic Cerebral Palsy and I use a wheelchair unless I feel like crawling (which I do, frequently).

 

Q: Could you tell us a bit about how you interact with disability in various ways?

 

Nicolette Barischoff: I resisted disability as a large part of my identity for a the greater part of my life. I’ve always identified as disabled (having a visible disability kind of forces you to be out and proud) but I fiercely resisted the idea of myself as Disabled Writer or a Disability Activist throughout my teens and early twenties. I think I thought of able-bodied peoples’ preoccupation with my disability as a distraction from the things I really wanted to say and write. To a certain degree, I still think that’s true. But as I grew into a proper adult, and as body and sex positivity became more and more important to me, I realized that I couldn’t be Body-Positive without being actively Disability-Positive. I have a very visibly disabled body. It’s the body I will always have. The two activisms are not separate spheres. They never can be.

 

Q: How have you interacted with ableism in the past?

 

Nicolette Barischoff: For me, ableism always seems to take the form of a struggle over personal autonomy. Many of the abled people in our lives really do want to empower us to make our own choices, but they often have trouble respecting those choices when they find them alarming or inconvenient or odd. They feel entitled, often compelled, to step in. Every disabled person I have ever met has at one time or another had their personal autonomy overridden for the comfort and convenience of the able-bodied, sometimes for the comfort and convenience of total strangers. Another off-shoot of this kind of ableism is when a disabled person is denied the assistance they need in the name of promoting their autonomy. I often encounter this at women’s clinics, where they don’t let my partner/assistant past the front desk in the name of protecting my privacy. Able people often fail to recognize a disabled person’s autonomy when it comes in the form of assisted living.

 

To be a true advocate for disabled rights (or human rights generally) is to empower autonomy, even when that autonomy is expressed in ways you do not fully understand or support.

 

Q: What does Disability Pride mean to you and what does it mean to be part of a disabled community?

 

Nicolette Barischoff:  To me, Disability Pride is Body Pride. It’s about coming to terms with the enormous variety of bodies there are in the universe, and celebrating them. There is no such thing as a “normal” body, or even a “fully-functioning” body. Every person on earth is just trying to get the most out of the body they’ve got. Disability Pride for me is about building worlds for the bodies we actually have, instead of trying to shove every body under the wheels of a great big Normalizing Machine.

 

Q: What potential is there is science fiction for thinking about disability in a different way?

 

Nicolette Barischoff: Science fiction is all about changing the shape of the world. It’s a genre that offers us the space (sometimes literally!) to imagine societies that fit our varied bodies. (Andi Buchanan would call these non-disabling worlds, worlds that don’t favor one type of body above all others.) Science fiction has all kinds of bodies and societies depicted in it. It’s kind of tailor-made for exploring relative concepts like disability.

 

Q: What are some pitfalls that literature gets into when portraying disability? What are some of the problematic tropes that arise?

 

Nicolette Barischoff:  We have had many talented essayists devote a great many words to answering this question over at Uncanny, so I won’t try to outdo them.  But I will say that one of the most common problems I see in disabled characters written by abled writers is a preoccupation with disability itself. Real disabled people have very bored and boring relationships to their bodies (because, you know, we live in them). When I wake up to my spine arching like the Brooklyn bridge, I don’t think “Oh, Gods, my disability! I hate this, this is so unfair!” I probably only have time to think, “Oh, fuck my back, today… Maybe a bath will help?”

 

Q: There is often pressure on those of us with disabilities to write about disability. How have you balanced this pressure to write disability with all of the other things you want to write about?

 

Nicolette Barischoff: Good question! And one I haven’t really found a good answer to, yet. I suppose the short answer would be that I’m very choosy about who I write about disability for. And my disabled characters don’t get to come out of my head until I have the right story for them.

 

Q: You wrote for the collection Accessing the Future. What was it like to write for an anthology that centred disability and didn’t seek to erase us from the future like so many tales of the future do?

 

Nicolette Barischoff: Wonderful! Accessing the Future means a great deal to me. It was the first science fiction story I ever wrote.

 

Q: In your story “Pirate Songs” as part of Accessing the Future, you create a wheelchair user, Margo, who is thrust into an alien environment. What was the inspiration for Margo, and in what ways was “Pirate Songs” ultimately about all of us disabled people feeling as though we have been thrust into an environment that is alien to our bodies?

 

Nicolette Barischoff: “Pirate Songs” is really a story about the fluid and flexible nature of privilege: the idea that a person can be extraordinarily privileged in some respects and utterly marginalized in others, that a person can be marvelously privileged in one environment, and horribly disadvantaged in another. The character of Margo came about as a result of a fun, funny thought experiment. Say you plucked someone from a very sleek, progressive, Roddenberry-esque “Federation of Planets” kind of society (away from all the 127 holodecks and the food replicators and the androids that play the violin) and you plunked them down in a backwater, somewhere at the very far edges of that society. What would they find? All societies look different at the margins, no matter how advanced they consider themselves to be, and if a person is disabled, that difference is all the more keenly felt. Disability is treated very differently in societies and subcultures that lack the resources to create non-disabling environments. Fear or hatred of disability often comes about when a society is too resource-poor to accommodate it.

 

Q: In what ways can our art (writing, visual arts, theatre, music) be an act of resistance to an ableist world? How can we evoke change through our art?

 

Nicolette Barischoff: I think change happens naturally as a result of the kinds of art and stories we produce. There’s a reason why book burnings and book bannings are a cornerstone of any burgeoning fascist regime. It’s because stories are natural vehicles for making us think new and uncomfortable thoughts by ancient and comfortable methods. We don’t need to TRY to make change with art. Art, by its nature, changes. All we need to do is write good stories full of wise and sensitive and beautiful human things.

 

Q: What are some things we can be doing to increase the profile of marginalized stories? So often, one of the biggest challenges is getting the sort of attention for marginalized stories that are already in place for able-bodied, straight, white, cis-gendered men’s narratives. How do we challenge this privilege in publishing?

 

Nicolette Barischoff: Good question. I don’t know that I’m entirely qualified to answer it. I think one thing we can do is invent new and unconventional ways of promoting stories. New platforms for doing so are popping up faster than publishing houses can make use of them. This is good. This subverts the gatekeepers.

 

Q: You are currently editing the personal narratives section of the Disabled People Destroy Science Fiction collection from Uncanny Magazine. What are some of the most rewarding parts of reading and sharing these personal narratives?

 

Nicolette Barischoff: It was always a fun surprise to me what each essayist chose to write about. Discovering which characters and stories are important to people and why. Oftentimes, two essayists would express totally opposite opinions on the disability rep in the same work of fiction, and they’d both make absolutely fabulous essays. That’s the sort of stuff that makes editing fun!

 

Q: What thoughts, perspectives, and ideas have these personal narratives evoked for you? How have the stories of other people opened up new viewpoints for you?

 

Nicolette Barischoff: One head-smacking moment occurred for me while reading Elise Mattheson’s essay “The Only Thing Faster Than Tonight: Mr Darkness.” She spoke on the idea that disabled people are often thought to be remarkable for simply existing (we’ve all been called “amazing” by dim and kindly strangers before, right? )  She points out that the mere fact that disabled people are alive and occupying the same space seems remarkable to able-bodied people, because there is an unspoken and unconscious belief that disabled people aren’t supposed to survive. That they aren’t supposed to live long enough to do perfectly ordinary things. That thought was a sharp tack to suddenly sit on! I couldn’t believe that I’d never thought about that aspect of it before. Anyway, there were a lot of little moments like that.

 

Q: What other current projects are you working on and how can readers find out more about your projects?

 

Nicolette Barischoff: The novel. Always the novel!  (The details of which are still misty and mysterious and very top-secret). I also have some pretty epic body-positive performance art planned for the coming year, so look out for that. You can find me on Twitter @nbarischoff or you can look up my dusty little blog, Turtles Have the Best Dreams.

 

——

 

Bio:

Nicolette Barischoff was born with spastic cerebral palsy, which has only made her more awesome. Her fiction has appeared in Long HiddenAccessing the FutureThe Journal of Unlikely AcademiaPodcastle, and Angels of the Meanwhile. She regularly writes about disability, feminism, sex- and body-positivity, and how all these fit together. Her personal essays on these topics get read way more than her fiction does, which is only a little annoying. She regularly collaborates with visual and performance artists to promote normalization of visibly disabled bodies. She’s been on the front page of CBS New York, where they called her activism public pornography and suggested her face was a Public Order Crime.

Interview with Elsa Sjunneson-Henry

Interview with Elsa Sjunneson-HenryBy Derek Newman-Stille

I was pleased to encounter Elsa Sjunneson-Henry’s work through the Disabled People Destroy Science Fiction project currently underway with Uncanny Magazine and am glad that we were able to talk about speculative fiction and the power of writing disability. I want to thank Elsa for taking the time to chat with us here at Dis(Abled) Embodiment and for her powerful responses that both enlighten us as readers and empower us.


Q: To begin our interview, could you tell readers a little bit about yourself?

Elsa Sjunneson-Henry: I’m a partially deafblind bicoastal raised speculative fiction writer and editor. I also work in tabletop games and do some theatrical design support work. My platform is more or less broken into three parts: I’m a writer, an editor, and an activist. All three intersect one another, and I work hard to not let them get too disparate. 

Q: You do work in both theatre and creative writing. How do these art forms speak to each other? Does your theatre work inform your writing and vice versa?

Elsa Sjunneson-Henry: I was having a conversation about this recently. My job in theater is as a dramaturg, which means I’m basically the researcher for a show. I create books for show staff, information about what a production history might look like, the setting (if it’s historical, it might include a brief for actors) and information on design choices for the tech people. It really informs how I prepare to write novels, or short stories, because I tend to create book bibles for my worldbuilding. Reference books for fictional worlds are how I got my start, and they don’t seem to be going away anytime soon. 

Q: How do you identify or engage with the topic of disability? 

Elsa Sjunneson-Henry: When I was a teenager I did not identify as disabled the way I do now. But these days, I’m proudly disabled. What that means for me is that I’ve engaged with this part of my identity pretty publicly, as an activist, a creator, and an editor. I don’t shy away from talking about what it’s like to be me, but I also don’t shy away from being honest about what I need or desire from the world. 
A lot of my work recently has been as an activist. I’ve been working to get better access to government representatives for disabled people like myself, because equal representation is deeply important to me. 

Q: What are some of the pitfalls and tropes that authors frequently get into when writing blind identities?

Elsa Sjunneson-Henry: The biggest pitfall is what I call the Daredevil Problem. A blind character who doesn’t need any of the trappings of blindness because their powers are able to circumvent the reality of being blind. In the TV show, Daredevil doesn’t need his cane to fight; he “sees” in red. His senses are so strong that we don’t need him to really be blind. 

The other one is, of course, that most sighted creators of blind characters assume that total blindness is the norm. Which it isn’t. Blindness exists on a spectrum of experiences, and not acknowledging that in our fiction is deeply frustrating. 

Q: What are some ways that your own work disrupts these tropes?

Elsa Sjunneson-Henry: When I’ve written fully blind characters, I make sure that they intersect with the adaptive devices that would work best for them. Not all fully blind people use guide dogs, some use white canes. Some, like Daniel Kish, echolocate. I try as best as possible to show a wide variety of blindness narratives in my work, because the individual experience of blindness is as much about the way a person interacts with it as what works best for them. 

Penny, my blind FBI agent from Seeking Truth uses a guide dog, because her guide dog is a part of her techniques for her job. Tara uses a white cane because she lives in New York City. Different needs for different women. Same disability. 
Disrupting the common narrative of blindness is one of my goals as a writer and editor. 

Q: Deaf characters are rarely explored in literature. What are some issues that authors tend to get into when writing Deaf characters?

Elsa Sjunneson-Henry: Much like with blindness, there’s a falsehood that D/deaf characters are completely D/deaf 100% of the time. I also think we don’t see a lot of Deaf culture, we see assumptions of how it manifests, but we do not see people who are engaged with (or not engaged with) Deaf culture in meaningful ways. But I suspect the latter will have to come from Deaf authors. 

Q: What do you do with your own writing of Deaf characters to create more empowering narratives?

Elsa Sjunneson-Henry: I try to push envelopes. I just wrote a story with a Deaf marine, who uses technology and sign to interact with the world around her. She’s still fully able to participate in the military practices that she has signed up for, and in fact is incredibly good at her job. I try to make sure that my D/deaf characters are just as interesting, and badass, as hearing ones. 

Q: What are some ways that we, as disabled authors, can challenge and disrupt tropes and assumptions about us? 
Elsa Sjunneson-Henry: I think if you live on the sliding scale of disability (like I do) wherein your disability is not the “expected” representation, it’s really important to show people what disability looks like on a wide array. 
I also think we as disabled authors are hungry for stories that many people can’t imagine us wanting. I heard it said recently that disabled people probably don’t want to write horror, because it turns us into victims. My perspective on that is different. I see horror as a place where we can triumph. When the world grows too dark, we can use our canes or guide dogs. When the word loses sound, we can sign. When people are confronted with sirens whose songs compel us into action, we may be able to turn off our hearing aids. 

Sometimes, being able to lose a sense or knowing how to cope with its loss is a skill we want. 

Q: You have written about ways to engage in acts of resistance and civil disobedience in your essay “Rise Up, Act Up”. What are some ways that we can resist ableism through acts of civil disobedience?

Elsa Sjunneson-Henry: Check out National ADAPT for starters. They’re incredible inspirations to me (and I mean that in the best way possible. Sometimes that’s a dirty word in disability politics, but not here). Witnessing disability and civil disobedience in action is incredibly important. 
If you want to get active, I suggest starting there. 
I think it’s important to remember that not all people with disabilities can or want to participate in civil disobedience, and while that’s not what you asked, what I’m about to say might sound like it excludes people with invisible disabilities, but I hope you understand it’s not meant that way. 

Civil disobedience for me is about more than just the political action of marching, or resisting, it’s about being visibly disabled in the course of that fight. Disabled people are often erased from political conversations, left out from where we’ve always been. I could probably do a whole essay on this, but the fact is, we’ve always been here. National ADAPT has been around since the 1970s, Helen Keller was a dedicated Socialist. Disability and activism come hand in hand, and by being disabled – even invisibly – in public, while participating in a march, or a civil disobedience actin, you’re being visible as a disabled person. That matters. That’s powerful. Because people don’t want to see us sometimes. 

Q: What role do the arts have in disability resistance?

Elsa Sjunneson-Henry: The ability to write about ourselves is an act of resistance. The ability to force people to see from our perspective is an act of resistance. I identify my participation in Disabled People Destroy as an act of defiance almost. I’m saying I’m here, and that I’m not willing to go away. It feels similar to when I march in a protest, or participate in civil disobedience. We don’t get anything done by asking politely, we get things done by defiantly existing. By creating worlds we want to live in we’re not asking to be included, we’re making it happen. 

Q: You are involved in Disabled People Destroy Science Fiction. What are some ways that science fiction can respond to ableism and challenge systemic disempowerment of disabled people?

Elsa Sjunneson-Henry: Let’s start by envisioning futures where disabled people exist. 
We have Miles Vorkosigan. Miles is great. I’ve been re-reading the books recently as I’ve been preparing for Disabled People Destroy. But despite Miles’ boundless energy, Miles is not enough representation for all of us. First of all, Miles is white. He’s male. Yes, he’s disabled, but I have to ask what Miles would have been like if he’d been a woman (don’t worry, I plan on writing about that soon.) 
We need disabilities at all intersections of genre. In our cyberpunk, in our hard scifi, in space, behind wardrobe doors, in alternate history. We need it, and critically looking at why disability hasn’t been included is something I hope to bring out of the non-fiction section of the Disabled People Destroy issue. 

Q: What science fiction authors have you read that are writing empowering narratives of disability and what are they doing that empowers us?

Elsa Sjunneson-Henry: As I’ve just mentioned – Miles. We definitely need to acknowledge Lois McMaster Bujold. She’s set the bar really high for disability in science fiction. 
While not science fiction, both Fran Wilde and Mishell Baker (disabled authors who will be writing essays for me in Disabled People Destroy) are writing gorgeous books filled with disabled characters. They bring me hope. 
I feel like we’re on the edge of seeing more disabled characters in fiction, not just because I’m writing them, but because I see more coming out. I hear from people who are writing disabled characters. It’s coming, and it will be beautiful. 

Q: Science fiction is frequently about imagining new possible societies. What are some ways that science fiction can help us to imagine an accessible world?

Elsa Sjunneson-Henry: The future, at least in some incarnations is about what we’ve improved upon with technology. Technology should, theoretically, make disabled lives better. For example, reimagine what a blind person’s life is like with a driverless car. Going from a life where you can’t get anywhere without relying on others, whether it be free rides from friends, or mass transit, to a situation where you can go everywhere by yourself – that’s revolution. 
Marissa Lingen’s essay for Disabled People Destroy is a great illustration of this. I highly suggest after you finish this interview that you go read it. 

Q: In “A Place Out Of Time”, you explore time travel for a disabled character. When i read through time travel narratives, i frequently ponder how narratives would be different if i engaged with time travel through my disabled body and consider how many time periods would be completely inaccessible. What was it like to imagine disability history and think through ideas of access and the historical erasure of disabled people for this tale?

Elsa Sjunneson-Henry: Going back to my first answer in this article about theater and my job in it, I’m a dramaturg. Which means, rather than studying English, I studied history. I dove into history and swam in timelines and studied the stories of the past. And so telling stories about history is in many ways, like coming home. 
I wrote A Place Out of Time in a hot rage. I was reading something, and it erased disabled characters, it actually didn’t even acknowledge them. And I was angry, about where we stood in history, and I wanted to show people what that anger – that loss – feels like. A Place Out of Time is about a lot of things, but for me, most of all, it is about the experience of knowing that your body could fail you, not because it is your body, but because the world around you won’t keep you safe. 

Q: Ableism and misogyny frequently intersect in ways that multiply the oppression of women with disabilities. What are some of the intersections you have noticed?

Elsa Sjunneson-Henry: Sometimes, being a disabled woman is a really unpleasant experience. What I mean by that is, society already sees me as fragile because I’m a woman, and then you add the perceived vulnerabilities of blindness and deafness, and well, you get a whole mess of trouble. Not to end this interview on a low note, but the amount of violent language, personal space invasion, and outright assault that I experience on a daily basis is unthinkable if you’re a man. People assume that your body is a public object to be moved and manipulated at will. Women with wheelchairs experience this too (and I’m not a man, but I suspect men with wheelchairs also have the experience of being moved without being asked.) 
When disability and misogyny combine it’s outright dangerous. It’s something we have to think about on a constant basis, of “am I safe here” and “will I remain safe here” just to leave the house. These calculations are often left out of fiction. 

Intersections of safety, or the lack of it, are vital. We also don’t talk about disability and race nearly enough, and I believe that is also something we desperately need to fix. Disabled people are not all white, nor are all disabled experiences ones colored by whiteness. Disabled PoC have a very different experience of the world and it’s important to listen to them. #DisabilityTooWhite is an excellent illustration of this. 

——
Elsa Sjunneson-Henry is a partially deafblind speculative fiction writer and disability activist. Her short fiction is included in Upside Down: Inverted Tropes in Storytelling, Fireside Magazine, and Ghost in the Cogs. She also writes for tabletop roleplaying games and was part of the ENNIe award-winning staff for Dracula Dossier. Her nonfiction has been included in The Boston Globe, Uncanny Magazine, Terrible Minds, and many other venues. She teaches disability representation at Writing the Other, and recently spoke at the New York Public Library on this topic. She is the Managing Editor at Fireside Magazine. She has a Masters in Women’s History from Sarah Lawrence College, and uses it to critique media representation of disability from all mediums.
Current Projects: https://www.kickstarter.com/projects/lynnemthomas/disabled-people-destroy-science-fiction-uncanny-m 

An Interview with Dominik Parisien

By Derek Newman-Stille

Today, I had the opportunity to interview an author and editor whose work I love and respect. I am excited that Dominik Parisien is going to be the Fiction Editor-in-Chief for Uncanny Magazine’s latest in their People Destroy series, Disabled People Destroy Science Fiction. This is an exciting new collection of SF that brings out the voices of disabled people.

Dom

Q: To begin our interview, could you tell us a little bit about yourself?

 

Dominik Parisien: Hi! My name is Dominik Parisien, and I am an editor, a writer, and an occasional poet. As my name might indicate, I’m a francophone. I’ve lived in Toronto for four years now, and prior to that I lived in Montreal, but I grew up in a small town called Rockland in Eastern Ontario. I co-edited the Shirley Jackson Award-winning anthology The Starlit Wood: New Fairy Tales with Navah Wolfe, along with two other forthcoming anthologies from Saga Press. I also edited Clockwork Canada: Steampunk Fiction. My work has appeared in a variety of magazines and anthologies.

 

 

Q: How do you identify with disability?

 

Dominik Parisien: I have chronic daily headaches, insomnia, and migraines. I also frequently lose consciousness and I experience seizure-like episodes where I collapse and convulse violently. I’ve been experiencing these things since I was in my early teens, and I’m coming up on thirty now. It’s been a long and pretty complicated journey for my identity.

 

 

Q: When did you first come to identify yourself as a disabled person?

 

Dominik Parisien: About three years ago, I think. I started collapsing as a teen, and I was constantly in the hospital and undergoing a number of treatments, but I refused to be identified that way at the time. My understanding of the term was very narrow, essentially limiting it to disabilities related to mobility, because it had only ever been presented that way. Additionally, in my hometown it wasn’t a word you heard a lot, it wasn’t really discussed, and it carried a certain stigma. In my eyes I wasn’t disabled, I just had a serious medical condition – I didn’t understand that those could be the same thing.

 

 

Q: In what ways have you connected with the disabled community and how have these connections shaped your identity?

 

Dominik Parisien: When I started university I became exposed to disability theory, and to more resources on disability in general. The first time I ever made a real connection was with my councillor and other students at the university’s Access Services. For my comfort, and in order to avoid disruptions for other students, I always took my final exams in a separate room, in case I collapsed. At first I was unhappy with the arrangement, because it felt like I was being treated differently, but eventually I learned to see it for what it was: an accommodation. I’ve never liked having people watch over me with my condition, and folks do get clearly nervous when I’m visibly in pain and look like I’m about to collapse, but through discussion with some of the others students in Access Services I learned to modify my outlook, and to change how I interpreted disability in general. You don’t always need help – and it’s easy to resent people’s assistance when they hover over you constantly – but when I finally started talking to others who needed assistance, it helped. I didn’t feel so alone anymore, and not as frustrated, because I now knew others who could relate to my experience.

 

One of my biggest and most important connections in the disabled community was you, actually. You may recall that when we first met years ago I was still reluctant to identify personally with the term disabled, despite the fact that I was for all intents and purposes a disabled person. Again, it had to do with a very narrow perception of the word. Befriending you and others in the disabled community helped me to expand my understanding of myself, and of how society treats disabled people. I was much more private about my disability at the time. Eventually I learned that if I, as a disabled person, did not speak to my experience, and did not fight for others like me, then people would continue to look upon disability in narrow and problematic ways.

 

clockwork_canada.png

 

Q: Chronic pain is something that people often ignore when they think about disability because it is not easily visible by the average passer-by. What is the experience of ‘invisible disability’ like for you? What kinds of assumptions do people make about you?

 

“Invisible disability” was one of my biggest impediments to my self-identification. When I do collapse it becomes very obvious that I have a disability, but the rest of the time people tend not to register it. I do have tells indicating my pain levels, but most don’t know them so they often assume I just look tired, or that I’m on drugs or have been drinking, if they notice anything at all.

 

The most common response to being told I’m disabled is the standard, “But you don’t look sick!” Again, it’s that perception that disability encompasses only visible conditions. So, there’s usually some surprise or confusion when I tell people I can’t drive, or can’t participate in certain activities. However, most disabled people I’ve told have not expressed surprise in that way, at least not openly.

 

 

Q: What do you feel it means to have Disabled Pride?

 

Dominik Parisien: To not feel shame for how we are. Disability is one of those things that is often treated as socially taboo, sometimes even abhorrent. People often treat disabled bodies as undesirable, as sexless, as disgusting, as deserving of pity rather than respect. To me, disabled pride means believing and proclaiming “No, we deserve the same dignity you afford yourself and others.” And having the absolute right to decry situations in which that isn’t the case.

 

Starlit Cover

 

Q: You experience Alice in Wonderland Syndrome. Could you tell us a little bit about that experience?

 

Dominik Parisien: It’s the experience of the weird. Alice in Wonderland Syndrome, the much less evocative name for it is Todd’s Syndrome, is a neurological condition that affects perception. Basically it makes you feel like you’re in Lewis Carrroll’s odd little book. It appears more commonly in children, but occasionally also in adults. How it works is that your brain alters your perception, essentially making you feel like you are incredibly small, or incredibly large, and it alters the size of objects, people, and landscapes around you. It can also affect the speed at which you perceive information. I wrote about my experience of it in some detail in an essay published by Uncanny Magazine: http://uncannymagazine.com/article/growing-up-in-wonderland/ It is a way very strange way of perceiving the world. It can be frightful, disorienting, very uncomfortable, but also fascinating.

 

Q: You are currently one of the editors for Disabled People Destroy Science Fiction. Could you tell us a bit about the collection and what you are hoping to see come from it?

 

Dominik Parisien: Disabled People Destroy Science Fiction is the latest project in the Destroy series, which was started by Lightspeed Magazine. So far there have been Destroy projects for Women, Queers, and People of Colour in that order (for SF, Fantasy, and Horror). Each project has focused on an underrepresented group in genre, and has featured fiction, personal essays, and other non-fiction. For Disabled People we’re also including poetry. The project is being funded as part of Uncanny Magazine‘s Year 4 Kickstarter, and we’ve already reached funding for a double issue – now we’re waiting to see if we get sufficient funding for print copies. The Kickstarter is still running, and you can find it here: https://www.kickstarter.com/projects/lynnemthomas/disabled-people-destroy-science-fiction-uncanny-ma

 

Once we open to submission – in January 2018 – we’ll be looking for fiction, non-fiction, and poetry from disabled creators. We’re looking for a wide range of work. Basically, we want to create an opportunity for disabled writers to tell their stories and to foster discussion about disability. I’m the Fiction Editor-in-Chief, so I’ll be handling fiction for the issue. I’m encouraging people to write stories about disability, that feature disabled characters, but that isn’t a requirement – first and foremost we want work from disabled writers.

 

 

Q: In what ways has science fiction in the past done a disservice to disabled people?

 

Dominik Parisien: Science fiction in particular has frequently erased disabled people. I know you’ve personally come across the standard discussion on this, where a science fiction author is questioned about the lack of disabled characters in their world and they respond, often defensively or even angrily, that the technology would exist to cure those conditions so they don’t exist in their world. That’s a common scenario. Or, if a disabled character does exist, it’s exclusively as part of a cure narrative – that science has solved the “problem” of their disability. There’s a regular imaginative failure in science fiction in particular to conceive of the place of disabled people in the future and how different technologies could affect them. The notion this reinforces is that disabled people don’t belong in science fiction. In fact, I’ve seen panels where audience members have outright said that disabled bodies don’t belong in space, because they couldn’t adapt properly – that they’re simply undesirable. Those sort of beliefs exist because people rarely if ever encounter scenarios in which a disabled person is featured, and because of an underlying lack of understanding of disability.

 

 

Q: What are some of the problematic tropes of disability you have observed?

 

Dominik Parisien: The cure narrative is one of the most problematic trope in my opinion, at least in terms of science fiction. Technology is integral to most science fiction, and our popular belief about technology is that it helps improve us, our abilities, and solves many of our problems. Naturally, many writers apply this to disability and view technology as the solution to most if not all disabilities. Cure narratives are some of the most harmful scenarios in science fiction. For one, they reinforce notions that a disabled body must necessarily be ‘fixed’ in order for an individual to be ‘normal’. Another major problem is that they don’t consider the implications of their ‘solution’. There are rarely consequences to a cure narrative – we usually don’t see the toll such a change could take on a disabled person, how it could affect how they view themselves and the world around them, how it might affect their interactions with their family, the complications that might ensue (bodily, hormonal, chemical, psychological). Usually the cure is the goal, the end-point of such narratives. It completely denies the human experience of such things.

 

Disability as a super power is another common and problematic trope. These usually accompany trauma, because for many people who are not disabled themselves it is very difficult to consider “losing” something (mobility, visibility, emotional control, etc) without gaining something in exchange. Superheroes really do love their “whatever doesn’t kill you only makes you stronger” narratives.

 

The blind psychic is a typical one, but it tends to appear more in fantasy or science fantasy. The “bitter cripple” commonly appears across genres.

 

There’s also a terribly frustrating tendency for disabled characters, especially mentors, to die in order to provide a lesson to the hero, or to allow them to continue their journey.

 

Those are just some standard examples. Of course it doesn’t mean they can’t be done at all, or never done well (though frequently they aren’t), but what often happens is that writers want to explore disability without disabled people – they go off their own experience and imagine what it would be like, or they base themselves on other scenarios they’ve encountered in media (almost always created by other people who are not disabled themselves). They don’t consider if those representations are harmful, and if they are they don’t consider the ways in which they’re harmful. The exclusion of real experience by disabled people, the undervaluing of their actual lives and experience in favour of narrative convenience or expediency, is dangerous because many authors end up reinforcing misconceptions and problematic representations.

 

 

Q: What positive things can SF do for the representation of disabled people?

 

Dominik Parisien: I think that exploring the narratives of disabled people in science fiction is particularly important because it allows us to speculate on the future and what it might look like. That obviously isn’t a novel idea, it’s a large part of what science fiction is about after all, but I mean it in practical terms. We love to explore technology and speculate about it, but usually that future isn’t about disabled people. By actively showcasing disabled characters, and considering issues of disability in those futures, we can help the people developing current or future technology to consider how these things might affect a variety of bodies, a variety of minds and abilities. If we look to these things now, then we might avoid potential pitfalls or exclusionary developments later.

 

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Q: What SF works have done a good job of exploring disability?

 

Dominik Parisien: I always find this question tricky, because what one person considers accurate and fair may not work for another, largely because our experiences/socializing/background are different. I had a blind classmate in university who loved Star Trek: The Next Generation, and who was especially fond of the character of Geordie Laforge. We often discussed TNG, and although she was frequently frustrated by how some of the story elements handled Geordie, she was also thrilled that he was part of the crew, and he was the first disabled character she encountered in a popular franchise (which seems to also be the experience of many SF fans). On the other hand, I know others who view Geordie as a major problem because they perceive him as a typical cure narrative. I think a character or book/story can certainly be problematic and important at the same time.

 

Louis McMaster Bujold’s Vorkosigan Saga is an example many consider good. Miles Vorkosigan has a form of dwarfism that leaves him prone to injury, and this isn’t treated like a minor detail to be brushed off throughout the narrative.

Although it isn’t often discussed from this angle, Octavia E Butler’s Parable books (Parable of the Sower, Parable of the Talents) are important to me in how they handle disability. The main character experiences hyper-empathy – she genuinely feels the pain of others – which can make her vulnerable. She lives in a cutthroat world, and she’s forced to hide her disability from most people. There are cultural and social situations in which disabled people either decide not to share their disability, or feel they are forced to do so for a variety of reasons. I wouldn’t call this aspect of Butler’s books necessarily positive, but I do think they ring true and provide real insight into some of the fears disabled people can have.

 

While it isn’t SF, I do want to mention Mishell Baker’s Borderline, which explores disability in some powerful ways. Mishell, like her main character, has Borderline Personality Disorder, and this features prominently in the book.

 

 

Q: How do you incorporate disability into your own writing?

 

Dominik Parisien: I have a particular interest in exploring ageing and disability in my fiction, and much of my recent work has focused on one or both. In particular, I’ve recently been exploring interactions between the elderly and disabled youth. I’ve done a lot of work with the elderly over the years, and I’m very interested in telling their stories. Alzheimer’s is one of my key interests, and I’ve addressed it in several works, most notably my poem “Sandbags”, which was published by Strange Horizons, and my story “Goodbye is a Mouthful of Water” in the anthology Those Who Make Us: Canadian Creature, Myth, and Monster Stories.

 

 


 

Dominik Parisien is the co-editor, with Navah Wolfe, of the forthcoming Robots vs Fairies, and The Starlit Wood: New Fairy Tales, which won the Shirley Jackson Award and is a finalist for the World Fantasy Award, the British Fantasy Award, and the Locus. He also edited the Aurora Award-nominated Clockwork Canada: Steampunk Fiction. His fiction, poetry, and essays have appeared in Uncanny MagazineStrange HorizonsELQ/Exile: The Literary QuarterlyThose Who Make Us: Canadian Creature, Myth, and Monster Stories, as well as other magazines and anthologies. His fiction has twice been nominated for the Sunburst Award. He is a disabled, French Canadian living in Toronto.

An Interview with Blaine Dickens

By Derek Newman-Stille

Today I have the opportunity to share an interview with Toronto-based Trans, Low Vision, Deaf/Hard of Hearing performer and playwright Blaine Dickens. In our interview Blaine talks about Deaf performance, finding a Deaf identity and community, ideas of access and inclusion and how theatre and art should be made to convey a message to all audience members.

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Q: To start off our discussion, can you tell me a little bit about yourself?

 

Blaine: I’m a Trans hard of hearing/Deaf low vision trauma survivor.

 

Q: And you are very involved in the arts, right? Can you tell us a bit about some of your art involvement?

 

Blaine: Yes! I’m a theatre performer and playwright

 

Q: What performances have you been in?

 

Blaine: I just recently wrapped up a community performance called Drift Seeds with theatre company Red Dress Productions, where I was an ASL performer. Previously, I was in involved in musical theatre – a mini musical I co-created with a group of young performers at the Journey Studio, and performed in the Emperor of Bananaland with Randolph Theatre’s Pre-college program.

 

Q: That is amazing!! Did you adapt a script for ASL performance or was it a script that was already made for ASL?

 

Blaine: My Deaf castmates and I (with the help of an ASL coach for myself) adapted the script from English!

 

Q: It is so great to find out about these adaptations because so often ASL is only included as an afterthought and often interpreters are called in to interpret but aren’t prepared to perform. Can you tell us a bit about your feelings about the need for Deaf theatre?

 

Blaine: This is a super, super important thing. Theatres are starting to catch the access bug now and some are offering interpreters for performances. But if we’re giving interpreters all of the ASL work, there’s no opportunities for Deaf performers to be involved. I went through a mainstream theatre program my four years of high school – no interpreters because I didn’t know ASL at the time and no accommodations in any other form. I was super isolated from the rest of my hearing class, because I just didn’t know what was going on. I wasn’t able to comfortably participate in any hearing theatre if there were no accommodations, so I was just pretending to understand everything. If interpreters or notetakers are present, there are extra issues with that in teaching the rest of the people involved in the project how to work with Deaf performers and how to work with interpreters. Most of the time it’s just uncomfortable and isolating. When I started working on Drift Seeds with three other Deaf performers and interpreters present (almost) constantly, it was the complete opposite. We were not only able to perform in the language we were comfortable in, but we had the support from our castmates for everything: translation work, advocacy, and figuring out how to all work together smoothly. It was the first time I felt comfortable in a theatre project – it was even the first time I could understand what was going on in a theatre project!

 

And the performance was a success! That’s one bit of proof that Deaf theatre has to be a more common thing.

 

Q: It seems like theatre has had a powerful relationship to your identity. Can you tell us a bit about the role that theatre can have for helping people explore identity?

 

Blaine: Just like any kind of art! People write down their stories and things that resonate with them because they believe others should experience it! I know for me, as soon as I started performing in ASL, I just felt a thousand times more empowered. As soon as I stopped being involved in projects that forced me to be in transphobic environments and gendered roles that I’m not comfortable with, I again felt a thousand times more empowered. I’ve gotten so many comments from other folks feeling the same thing once they saw those things happening.

 

Q: You mentioned attending a hearing high school. What was that like as a Deaf/ hard of hearing person?

 

Blaine: Pretty horrible. I failed two courses and almost failed pretty much everything else. I couldn’t connect with anyone or grow as an artist at all. The most frustrating thing was not being able to hand in work I was proud of in theatre because I just didn’t understand it. I didn’t really ask for access though. I didn’t know how to advocate for myself at the time and for a while I didn’t even recognize that the reason these things were happening was connected to my hearing level – so I just tried to understand what I could and ignored the rest. People hated that, even though it wasn’t my fault. I wasn’t ready. They just saw slacking, stuck up, other super negative things. It was a pretty horrible time and I wish it wasn’t because my Deafness is such a positive thing in my life now. In my last year of high school, though, I talked through some of what was happening with a couple of friends and was introduced to the basics of ASL and Deaf culture! I started to understand what was going on and a lot of things improved, mostly outside of school. I still tried to hide it from my peers in school because I would still be a non-hearing kid in a hearing school, but was developing my identity on my own.

 

Q: It must have been such a hugely transformative experience to be introduced to ASL and Deaf culture. What were your first experiences of Deaf culture and what did it feel like to finally find an alternative to the audist world you had experienced previously?

 

Blaine: Honestly, at first it was almost just as bad. I started to enter Deaf spaces my first week into learning ASL. I wanted to (and I think I expected to) understand everything right away overnight. At that point I was so fed up with the hearing world I just wanted to be immersed in the Deaf world and have that be my identity. But I still had a lot to work through. I still identified as hearing – I used speech with my hearing friends who signed because I wasn’t comfortable with ASL yet so I still spent a lot of time pretending to understand people, because that was what I knew how to do. It was really frustrating. I found no spaces accessible and really just wanted to connect with someone in at least one language. I felt forced to improve my ASL faster than I physically could so I could match my Deaf friends and their level, so I pushed myself way too much. I guess it paid off though! When I started to understand pretty much everything, I felt really included. I could use interpreters and access Deaf spaces without any insecurity. I wasn’t always working to understand people, and it made a huge difference in everything I did.

 

Q: This brings up a really important concept, the idea of “access”. Frequently when we see the term “access”, we think of the ways that we are not really included, but only acknowledged in a minimal way. Can you tell us a bit about how you feel about the word “access” and what it means for you?

 

Blaine: Beginning to be able to access Deaf spaces was the start of my identity development! It was a huge milestone, but I had to do all the work to make it happen. Having notetakers was pretty much impossible, and, in general, making friends was also impossible until I worked my ass off to learn more. I really just wanted to exist, be okay with where I was at, and access things that I wanted to be a part of.

 

In terms of my theatre work, most people just really don’t like working on access. They think it’s boring. They don’t want to spend the money. I really don’t have much experience with hearing people wanting to make something accessible for me. I’ve learned that in order for me to be able to access things, I kind of have to throw out the word “access”. In theatre, I like to try to get artists/arts educators/etc to think of what they’re doing as not providing access but thinking of it as their art. So I instead centre my goals for access around performance and thinking up new ways of creating perfomance. How can my performance be experienced from different perspectives based on ability? If my show is audio-based, and I want to provide access, how can I keep that art and translate it into something visual-based? It’s a lot more fun for artists to explore how they can tell their stories in different ways rather than “spending money on access”. Because really – access looks like having two boring interpreters on the side of the stage. They’re not performers. Performance looks like integrating Deaf performers and ASL into the already existing work, as well as so many other countless ideas.

 

Being able to access things is important – but from my experience people need a push to be able to provide that. And they don’t want to admit it but it helps when they’re also doing something that’ll benefit themselves.

 

Q: I like the way you linked art to the idea of making sure people are able to get the message! Art is really connected to the audience and it is interesting that so many artists fail to recognize Deaf or disabled audiences. What are some things we can do to help artists to think about ways to involve their WHOLE audience instead of just the able-bodied and hearing audiences? What ways are you working in your roles as playwrite and performer to make sure to include your whole audience?

 

Blaine: That’s the exact kind of thing I’m trying to figure out as I go along! For now, I am trying to get as many people in the conversation around access as possible and listen to them. I want to value Deaf & disabled artists and audiences, not just from my own communities.

 

I’m working on a bunch of projects! My “projects” Workflowy document is a mess with ideas and half-finished theatre things. We’ll seeeeeee.

 

Q: That is fantastic!! Now to conclude our interview, can you tell readers a bit about you and how they can connect with you and find out about your theatre work and other media?

 

Blaine: Of course!  I’m on every social media platform and super reachable on all of them. @blaineinwonderland on Instagram and @blaine_dickens on twitter.

 

Q: Thank you again for taking the time to talk to us about all of your work in performance and giving us some insights on ideas of inclusion.

 

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You can discover more about Drift Seeds at https://reddressproductions.org/current-projects/drift-seeds/

 

You can discover more about Red Dress Productions at reddressproductions.org