Tag Archives: representation

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.

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.


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.




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.



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.

Dis Arts

By Derek Newman-Stille

Dis Art work by Derek Newman-Stille

Frequently, when people see the words “disability” and “art” in the same sentence, they assume that this means “art therapy”. This is partially because of the way we frame “disability” as something that always means “working toward being fixed” or “working toward a cure”. This idea is fundamentally ableist and assumes that disabled people only live in the context of medicalized lenses and that disabled people are only interested in being “fixed” – i.e. made into able-bodied people.

Art Therapy can be a worthwhile venture for people who are interested in therapeutic qualities of art and expression, but it is important to recognize that Dis Arts (art work by people with disabilities) is not the same as art therapy. Dis Arts is an expressive art form that may or may not stem from bodily experience. It is an art that expresses a disabled world view. It does not always have to be art that is specifically and noticeably about disability, but, rather, can be the expressions of a disabled person about other aspects of their lives, wider political commentaries, or expressions of beauty (art for art’s sake). 

I used to separate my disabled identity from my artistic identity, believing that I was creating fantasy art that had nothing to do with my disabled identity until people started to refer to me as a disabled artist. I had to pause and reconsider how my art reflects disability. I noticed that my art did show an interest in representing the body, and an interest in representing alterity (Otherness). As I was thinking about disability and art, I started to think about early diagnoses that I got from doctors about my learning disabilities. I was told early on that I would not be able to do art work because I have a fine motor disability. In fact, my early art work was described as consisting of “just scribbles” and early assessments told me that my “fine motor control is still quite immature”. These statements were repeated in later assessments even though I felt a compulsion to create art, to give context to the ideas in my imagination. In that way, art became a mechanism for me to resist hegemonic descriptions of my body. I refused to let my body be limited by the narratives that were imposed on it, so I devoted time to my art work. 

As I reflected on the idea of my art work being a resistance to narratives imposed on it, I realized that the act of making art itself was linked to my disability. It became something that stemmed from a resistant Crip empowered perspective. Even when I wasn’t creating art that specifically referenced my disability, my art was still a Dis Art, a work of counter-narrative to the medicalization of my body. 

After encountering the work of other Dis Arts performers and creators, I decided to venture into my own Dis Art and created several pieces that stemmed from my body itself, using the canvas as an extension of ideas about my body. I quickly found that the best medium for these art pieces was mixed media since mixed media, like my own body, is a conglomeration of objects, texts, and styles of art. It fit with my ideas of my own body as a composite of multiple different views and texts. I combined objects that seemed to resonate with my body into new images, focussing on my spine (for my spinal disability), my brain (for my learning disabilities), and ideas of the viewer, because people often stare at the disabled body. I assembled a series of mixed media works of art into a show titled Identity Masquerade: The Queer Crip Art of Derek Newman-Stille that I displayed as part of the Queer Coll(i/u)sions Conference, allowing the work to speak to people without my providing context for these pieces. I wanted people to reflect on the way that they saw these works of art, and to think about the way that the act of staring at art could reflect the way that people stare at the non-normate body. I emphasised this focus on staring by including mirrors in images that forced the watcher to stare at themselves as they tried to stare at the work of art. I included images of spines mixed with images of nude bodies to represent ideas of our bodied being rendered nude before the Gaze. 

Coming to Dis Arts was an act of self-discovery for me, an act of empowerment, and an act of vocalizing things that extended beyond words. 

Dis Arts are complicated because our disabled identities are complicated and are never fixed as one thing. Disabled bodies are fluid, and they intersect with our other identities as well as connecting to a community of artists who identify as disabled. There is a different kind of viewing in Dis Arts works, and it is one that involves the body, that implicates the body, and that invites the body into the art work being produced. Dis Arts can be an intensely political art – one that speaks to inaccessibility, a history of being Othered, the power of community, and the possibility of change.