Tag Archives: writing disability

Interview with Nicolette Barischoff

Interview with Nicolette Barischoff

By Derek Newman-Stille

nicolette

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

——

 

Bio:

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

Interview with Elsa Sjunneson-Henry

Interview with Elsa Sjunneson-HenryBy Derek Newman-Stille

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


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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Fictional Portrayals of Disability- Why Do They Matter?

By Derek Newman-Stille

I frequently get asked why I look at portrayals of disability in fiction. I am often told that I should look at something “real” and “substantial” like policy. 
I find this an interesting assumption. People frequently assumed that marginalized identities are going to be best changed through policy and politics, but policies are shaped by social consciousness, by the realm of ideas. Fiction is about the realm of the possible, the realm of ideas, and it is ideas that make changes more than policy. Policies won’t change social attitudes unless there is a social receptiveness to these changes. 
I frequently think about this in terms of requirements for accommodation in building codes, and the notion that undergirds this: “minimal compliance”. Minimal compliance with building accessibility codes mean that people can continue to view disability as a PROBLEM, as an issue that doesn’t need to be accommodated, but instead needs to be appeased. This means that buildings often have spaces that don’t really fit disabled bodies, but instead fit codes. Disabled bodies are still viewed as non-viable in these spaces, perceived as a barrier to an easy build rather than a necessary inclusion. Rather than viewing us as needed and essential participants in these spaces, we are viewed as inconvenient obstructions. 
Fiction provides a space for radical rethinkings of our social spaces, challenges to a system that is content with our erasure. Fiction invites society to radically re-imagine our perceptual frameworks, our entrenched beliefs and the things that we consider self-evident. 
Yet, our fiction is produced from the moulds that have been created previously, from our social frameworks and from our existing taken-for-granted understandings of the world. Our fiction, and our ways of imagining disability are fundamentally problematic, limited, and actively damaging. They reproduce ideologies that push disabled bodies further to the fringes and influence policies that don’t really include disabled bodies and often actively exclude us. 
Our fiction, our imaginations, need an infusion of something new and potent, something that radically reconsiders not just literary tropes, but imaginative possibilities. We need a radical reconception of the way that disability occupies our imagination, challenge images that reduce us, and open up new possibilities for discourse.
Critical explorations of popular culture, literature, art, imagination, are not just things in the realm of academia. We should all be radically reconsidering our portrayals, critically questioning them, discussing them, and producing something new.

Able-Bodied People Speaking ABOUT Disabled People

By Derek Newman-Stille

Far too frequently, able-bodied people feel that they have a place to talk about disabled people. They use different justifications for this act of narrating our bodies to us, but the bottom line is always the same. There is an assumption that our bodies are open to public debate, that we are resigned to expertiseism about our bodies not only by medical practitioners, but anyone who feels that they have a stake in narrating us. 
I see this most commonly when it comes to medical practitioners, whose power to narrate our bodies is so strong that we have to depend on their assessment of our bodies to get access to basic accommodations. Our own narration of our bodies is never considered enough to guarantee that we will acquire everything we need. In university I observed this with the accommodation letters that I was forced to bring to my professors. My own narration of my bodily needs was not enough to be considered appropriate, so I needed to bring a letter detailing my needs in order to get them. Catherine Duchastel de Montrouge brought up the need for accommodation letters during her recent talk at the Canadian Disability Studies Association and discussed the fetishization of the accommodation letter for our post-secondary education system. Duchastel de Montrouge talked about being told by professors that she shouldn’t need accommodations, that she would be denied accommodations because the “professor knows best”, and the suspicion of accommodation letters by most professors. When talking to her, I likened the accommodation letter to a passport, allowing us into a space that we are considered unwelcome in and a space where we can have our rights withdrawn at any time. We depend on these accommodation letters for access to education, but they are dependent on the physician writing them, a university office drafting their final copy, and a professor deciding to abide by these letters. 
This is, of course only one example of the need for physician letters, since disabled people also need the word of a physician to access disabled parking, be able to use accessible seats on aeroplanes, have access to disability accommodation, and in order to access government support funds for people with disabilities. 
I have frequently had people narrate my body to me after seeing me walking with a cane. I have been told “if you work hard enough, you won’t have to use that any more”, been asked “why do you think you need a cane?”, and been told that I “look normal enough”. These narrations happened by strangers, which frequently occurs for disabled people. Able-bodied people have been told through their media that they have a right to narrate disabled people’s bodies to them, to tell us how to live our lives, how to be disabled in this world, and how we should act to make them more comfortable with our presence on the landscape. 
A friend recently came back from a writers’ conference where she was the only disabled person on a panel about writing disability. It should be abundantly clear to everyone that disability is generally not written of well in our literature and popular culture, so I am amazed at how little people want to listen to disabled people give input on their bodies and how to write them well. She noted that all of the able-bodied people on the panel tried to tell her how disabled characters should be written, replicating tropes about disability. They even waved their hand at her to say “people like you” when talking about people with disabilities. 
I have experienced similar issues when able-bodied people have asked me to read their stories about people with disabilities because they generally respond to my reminders that the character is presented problematically by getting angry and saying things like “that is how I need the character to be for the novel to work” or “but it’s not really about their disability, its about what it means for their society” or “but I saw a meme on facebook that said this” or “I talked to someone who was disabled and they said it was okay to write people like them this way” or “but I read a book on it by a doctor and this is what they said” or “but I tried to make this character a nice person, isn’t that enough?” This is one of the reasons I have become more hesitant to read people’s manuscripts, especially when they portray disabled people. I know that little will shift when I ask them for more, ask them to do better, or ask them to listen, pay attention, and understand. 
Able bodied writers and media consumers seem resistant to hearing back from the people they write about. Our disabled voices only complicate the easy symbolism that they write onto our bodies, our three-dimensionality only complicates the simple one-dimensional characters they want to write.  We make it hard to write us when we speak up.
I think that bears repeating: We make it hard to write us when we speak up.
I think this could be a call to action. A call to able-bodied people to actually listen to us, a call for convention organizers to have disabled people speaking about disabled characters, and a reminder of the call “nothing about us without us”.