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An Interview with Elisabeth Harrison, PhD Candidate in Critical Disability Studies at York University

An Interview With Elisabeth Harrison, PhD Candidate in Critical Disability Studies at York University.
By Derek Newman-Stille

Q: So, to start our interview, could you tell us a little bit about yourself?

Elisabeth (She/her or They/Them): Sure! I’m a PhD candidate in Critical Disability Studies at York, where I’m researching trans, genderqueer, gender non-binary and non-conforming people’s experiences in the mental health care system in Ontario. I’m 33, and I’m a white AFAB (Assigned Female At Birth) genderqueer femme. I come from Brockville, ON. I also identify as a psychiatric survivor, which is part of what brought me to the work I’ve been doing. Besides that all, I have a day job at the Centre for Independent Living in Toronto where I work for the Direct Funding Program.

I want to add at the start of our interview that my perspectives are my own and do not reflect those of my employer

Q: What got you interested in exploring Trans, genderqueer, and nonbinary experiences of mental health care?

Elisabeth: I think it’s a little bit of “me-search,” which is a phrase one of my research participants introduced me to.

Q: I really like that term “me-search”. What is it like to do research that brings yourself into the narrative? So often academics pretend that they research objectively, but there is something powerful about involving the personal in our research.

Elisabeth: Isn’t it a good phrase? The person who introduced me to it explained that it’s often used in a criticizing sense in their (allegedly “empirical”) field, but I liked it because it reflects the way that we bring ourselves to our work, and I think that’s important to acknowledge and it isn’t a bad thing. Obviously, as a community member I have some kinds of knowledge that can come with personal experience. But of course, this isn’t to say that my experience is also quite limited and shaped by the specificities of my identity. So even in doing “me-search,” I’m learning a lot about those limitations and learning so much from people who have had similar and different experiences to mine.

I was interested in this topic basically as a result of my own difficult experiences in what I perceived as a sexist, heterosexist and transphobic (not that I even knew that word at the time) mental health care system. The experiences I had seemed to be much more oriented toward control and maintaining unequal power structures than toward providing support or opportunities to heal, so I wanted to look into some aspects of that in my work.

Most of those experiences were when I was a teenager, so my knowledge was limited and I think some things have changed (hopefully) since the early 2000s, but that’s what I was starting from.

My undergrad and my MA are both in Gender Studies, and I was introduced to Critical Psychology and a bit to Mad Studies there, then I went into CDS to focus a bit more on that.

Q: The medical profession has incredible power over our identities and ways of knowing ourselves, particularly since they shape text about us. Yet they also claim objectivity in labelling us. What are some of the problems that come with this power and ability to create labels about us?

Elisabeth: I understand that labels are ways of organizing information. In some ways they can be helpful and help us communicate with each other. So for example, when I learned terminology like “genderqueer” and “enby” (nonbinary) for the first time, I was like, “Yes! That is so helpful! That helps me understand what’s going on!” At the same time, when labels are applied by people who have institutionalized power to people who have less power, when those labels come with so much force, so much stigma and so many unacknowledged limitations, my view is that it’s often a lot less helpful and it can even be harmful for people.

When it comes to information about mental health, I wish that more people knew that the way the DSM has been constructed has always been a thoroughly political project.

Actually, I think that many of us in the TQBLG community do understand that, since people remember the process that got “Homosexuality” removed from the DSM. But generally, I think the idea that “mental illnesses” are diseases like any other (“just like cancer or diabetes”) is the more dominant view.

Q: So often our mental health narratives don’t include our own voices. What benefits can occur when we are able to narrate our own lives?

Elisabeth: I think that the power to author and tell our own stories, and to create communities in which our stories are respected and understood are incredibly important. Research-wise, this is the primary reason why I chose a narrative-based methodology and also did digital storytelling work with participants. Everyone should be able to tell their story, and should be given/should seek out the information they need to understand the stories of other people, and the big stories that impact all of our lives in different ways.

It’s hard to tell your story when you don’t know why the things that are happening to you are happening, you know? And it’s hard to understand stories from outside your experience without that knowledge as well.

Q: Could you tell us a little bit about the digital storytelling work you were doing?

Elisabeth: Absolutely. I have two supervisors for my dissertation, Dr. Geoffrey Reaume and Dr. Carla Rice. Carla is the founder of the Re-Vision Centre for Art and Social Justice, which is a research centre focussing on using digital media to enable oppressed people to tell their stories. ReVision has moved toward supporting people to create different kinds of videos, but their methodology started with the digital storytelling approach, and I was trained in that by the Centre so that’s what I decided to do with my own project. Digital Storytelling is a process where people are supported to tell a 3-5 minute long story using voice, music and visuals. The elements are created brought together by participants during a workshop, with support from facilitators who might be videographers, photographers, filmmakers, etc. It’s an arts-based or arts-informed method that allows people to choose a story and present it in the way they choose, which I think is awesome.

I should mention as well that the Re-Vision Centre has incredible equipment that makes this kind of work possible. I was very lucky to be able to access these resources.

Q: When you talk about Dr. Rice and Project Re-Vision, I can’t help but think about Artivism (art activism) and the power of finding new and creative ways of expressing information. Do you find that digital storytelling gives people a chance to express things in a new and creative way? … Especially since some of this material may be really challenging to express in traditional methods.

Elisabeth: What a great parallel! Yes, absolutely. I think that art is so powerful — the way people engage with art is often different to how they might engage with academic prose. Actually, I think most people don’t necessarily engage with academic writing very much, especially once (or if!) they’re out of the academic world. But most of us engage with art in various ways. We listen to music, we look at visual art, we constantly engage with design in our lives, we watch movies, etc. So for people to tell their stories in a way that is likely to be more accessible to more people is really helpful, both for the creators themselves (as they have quite a bit more control over the process than they would with, say, how an interview is coded and analyzed and presented by a researcher) and for potential audiences. I think that the process of storytelling is also really interesting. Many digital story creators haven’t made a video before and may not typically engage with any of the elements of the story at all. Of course, some participants are artists and that’s fantastic, but the process is organized in a way that it’s accessible to non-artists and even to folks who may not be super familiar with the kinds of technology used in the process, so I think that inevitably allows for the exploration of new ways of thinking about expression and how to convey and represent the information and meaning and feelings and resonances that they want to put into the world through the story.

I did not make a story in my own project because I was facilitating the workshop, but I’ve made two digital stories in other Re-Vision Centre projects. I like art, but I don’t really consider myself an artist. I’m absolutely not a practicing artist in any way whatsoever. So it was really interesting to have a chance to think about the elements of sound and visuals and timing and tone that I don’t typically consider too much when I’m basically writing essays.

I do try to make my academic writing as clear as possible, and there’ll very occasionally be a sentence that I think is kind of nice, but beyond that the other elements just aren’t there.

Q: Nicely said!! On a personal note, I really wish I could have taken part in your study. It sounds like you have created a powerful space for Trans, genderqueer, and non-binary folk to talk about their experiences as psychiatric survivors.

Elisabeth: I wish you could have as well! I did try to create that kind of space. It’s often just a really hard topic to discuss. I am extremely grateful to all the people who spoke with me and made stories with me, I am so, so, so appreciative of their trust and openness and generosity.

It’s been hard in the past while, I did my interviews a couple of years ago now, and I think a lot about how all the developments around this issue are impacting the people I met. It’s been a rough go lately and its just so unfair.

Q: A lot of readers may not know about psychiatric survivor narratives or mad pride. Could you tell people a little bit about the background of these terms and, especially, what they mean for you?

Elisabeth: The terminology of psychiatric survivor has been around for quite a while (I believe since the 70s and 80s) and it’s a phrase used to challenge the idea that mental health care is, well, care, rather than, say, coercion or incarceration or just unhelpful or uncaring.

Mad pride, or the Mad movement comes from another, related perspective, that the kinds of states or experiences or ways of being conceptualized in the medical model as illness aren’t always inherently negative, but could instead be considered as just different from what gets constructed as “normal.” For me, I relate to these terms because I think they do a lot to politicize the experience of being pathologized, and to politicize difference and distress. And I think that distress, especially, is very, very often rooted in experiences of oppression, violence and injustice, which is something that the medical model doesn’t usually concern itself with.

Q: You mentioned the tough past couple of years and I can’t help but think about the impact of the Ontario Conservative Party’s decision to not recognize gender identity and what this may mean for people like us and those involved in your project. What sort of influence may this change have in Trans, non-binary, and gender queer lives and our psychiatric encounters?

Elisabeth: So basically, by pulling this garbage move at their party conference, they’ve done a lot of damage even without having to drag this bullshit through the courts and/or invoke the notwithstanding clause. Obviously it would be even worse if they did that, but the way that they did this has allowed them to express contempt and hatred toward our community and embolden bigots without all those pesky protests and legal bills. Personally, I have essentially zero problem with being disliked or misunderstood by people like Granic-Allen and/or Ford, but it’s very upsetting and disturbing to think about what this is going to mean for younger members of our community and for all the members of our community who face harassment and violence and discrimination on a daily basis.

Q: I can’t help but think that just discussing the possibility of disregarding gender identity will inspire acts of Transphobia and gendered violence by the public (and possibly by health care professionals). When people in power feel safe to express Transphobic sentiments it emboldens people who believe Transphobic ideologies to be more open about them as well.

Elisabeth: I have to situate myself, too. I’m an AFAB femme with a feminine gender presentation. Unless I tell people, people don’t typically know or guess or assume that I consider myself non-binary. I have been trying to come out more, and I try to speak out about the issues facing the trans community as someone who could be considered as having an identity that’s under the trans umbrella, and also as a person who is trying to act in solidarity with trans/enby/genderqueer people who are maybe not read as cis, or whose gender presentations are interpreted as non-normative. I’m extremely cognizant that the space I occupy in society is completely different from the kind of space that someone who, for instance, faces transmisogyny, would be.

I completely, completely agree with your analysis, Derek. I think that’s part of why they did this.

Q: Trans experiences with health care tend to be fraught with dangers, especially since many medical practitioners still believe Transphobic ideologies. This has resulted in a lot of Trans people not seeking out health care even when health care is considered urgent. What are some things that we, as a community, can do to shift the dialogue around health care for Trans folks and, especially, mental health care access? Or is there other options outside of the psychiatric system?

Elisabeth: That’s a very tough question and a tough reality.

Q: I was thinking the same thing. It’s something I have been struggling with finding answers to lately… and there aren’t a lot of answers out there.

Elisabeth: We need to keep doing what we’ve been doing as a community, which is to continue our activist work to ensure that our realities are as much as possible understood by those in power, to take up decision-making roles and shape the policies ourselves (which is arguably and in part what happened with the shift away from GID and toward GD, which has been helpful in quite a number of ways). We can keep advocating for better access to non-medicalized or less-medicalized forms of mental health care, such as counselling and psychotherapy. And beyond that, we can keep doing our work to improve or change the aspects of society that lead to distress for so many of us. So part of that is to promote the acceptance and celebration of gender diversity! And part of that is to advocate for access to housing, food and enough resources to lead a decent life, whether that comes through income security programs and/or employment and/or the dismantling of the neoliberal capitalist system. Which is clearly a lofty goal, but it’s so often the conditions of people’s lives that lead to distress, or that make differences in ways of being so hard to live with. We are told that we have to be productive all the time, that we have to be “regulated” all the time, there’s very little space for difficulty and difference, especially if you’re situated at the nexus of various axes of oppression. There’s no time, there’s no patience, there’s no opportunity, and there’s no tolerance. And that’s not okay at all.

I have to say too that I feel like as someone with more privilege in a lot of ways, this work is on me. And it should be on people working in solidarity with the community. This work can’t keep being put on the backs of the most marginalized people in our community.

In practical, more immediate senses, I’ve learned a lot from working with Dr. Carla Rice about how art can be used to influence health care provider perspectives. So it’s also about getting in to medical schools and health care institutions with pieces like the ones that the folks who participated in my project created, getting in with personal stories about what needs to be done differently, and helping people who are already in the system to learn and do better.

Q: Nicely said!! It sounds like getting our narratives out there is important not just for us to see ourselves represented, but also to shift social consciousness, especially for care providers. What are some ways we can get our voices out there?

Elisabeth: I definitely think that’s true. Well, the kind of work you do to promote disability studies perspectives online is an amazing example! Getting critical perspectives out into the world is a huge part of the process!

Q: I am reminded of projects like “Graphic Medicine”, who are trying to get “patient” narratives out there in graphic novel form to help medical professionals think about the lives and experiences of their patients. In what ways can art play a role in educating?

Elisabeth: Oh, great point! All kinds of art are good ways to learn about people and their lives. Derek, legit, they need to hire you to teach at a medical school. For real. The way you use art and culture to bring out so many dimensions of life and experience for your students, I truly think that’s what health care providers could use! Of course we can also present stories at health care institutions and schools in the meantime.

Q: Elisabeth, imagine how voices like ours could really change medical perspectives.

Elisabeth: Right?! Challenging sanism, ableism, transphobia, queerphobia all at once! And there need to be even more voices and more perspectives, to shift thinking on racism, colonialism, transmisogyny. The people from our communities should be at the forefront, telling the stories of what our communities have been dealing with and the incredible things that many of us have done even in the face of such intense oppression.

Q: I want to personally thank you for all of the work you are doing and all of the work you have done. You have done so much work for our community and I really appreciate you taking the time to talk about your work here. Is there anything further you would like to say to readers?

Elisabeth: Thank you so much, Derek!

It has been an honour to speak (/write) with you tonight! Thank you so much for inviting me, I really appreciate it. I always learn so much from you!!

 

Q: I like the way our conversations are always so generative. They get both of us thinking in new ways. I can’t help but think what medical practitioners could get out of collaborations and conversations like this.

 

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Elisabeth Harrison (she/her) is a PhD Candidate in Critical Disability Studies at York University. Her dissertation research is about trans, genderqueer and non-binary people’s experiences with mental health care in Ontario. She also does work in fat studies.

 

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.

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

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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.

 

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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 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