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