#UHateDisabledPeople

#UHateDisabledPeople

By Derek Newman-Stille

Twitter may seem like a strange place to create community with its short word counts and inclination toward simple answers rather than complex explorations, but it has become a space for disabled people to share our experiences with one another and to share experiences that we may have felt were ours alone. Disabled stories by disabled people are rare. Frequently publishers would prefer stories ABOUT disability written by abled people rather than narratives about disability by those of us in the disabled community. Yet we know there is a need for us to share our stories and to use our stories to advocate for change.

Frequently when people say that we need our stories to advocate for change, the assumption is that we are writing for an abled audience rather than a disabled one, however, one of our biggest tools for advocacy is our community. We have been able to achieve change through uniting as a disabled community and collectively engaging in activism.

Often we are expected to fight for disability justice quietly and accept what the abled majority tells us we are due, however, that hasn’t been effective in the past. We have never had rights “given” to us by a “compassionate” abled majority, we have always had to fight for our rights with committees, with demonstrations like climbing up the stairs of congress, and through legal action by disabled people. Being quiet has never served us, so we need to speak up and we need to make change loudly as a community. Disability justice comes from disabled anger.

Imani Barbarin has been a key figure involved in Disabled Twitter and has been devoted to disability justice through multiple fora including the Twitter hashtag #UHateDisabledPeople. Barbarin is a conversation starter, coining various twitter hashtags in order to begin conversations between disabled people and evoke change. As a disabled black woman, her work is intersectional, drawing on disability studies, but also a critical race perspective, and a feminist outlook. Barbarin has been a key figure in exploring disability representation, disability culture, and inclusion.

Barbarin’s hashtag #UHateDisabledPeople is in-your-face, powerful, and expresses the NEED for change. She expresses the idea that acts of ableism ARE acts of hatred toward disabled people. This hashtag has allowed people to come together in expressing our common experiences of ableism with a lot of responses by the community stating “I’ve experienced the same thing”

Some key tweets that have come up are:

Dr. Laura Dorwart points out in her Tweet “If you hear that a violent crime has been committed against a disabled person and your first thought is that the loved one who did it must have a good reason or deserve sympathy, #UHateDisabled People.

Dr. Dorwart points out that people often dismiss acts of murder against disabled people as “for the best” or “an act of love”, thus excusing the family members who murdered them. Frequently this is used as an excuse to get people out of murder charges when the victim has been a disabled person.

Gregory Mansfield points out further serious crimes against the disabled population in his tween “#UHateDisabledPeople if you believe that sterilization, insitutionalization or filicide of disabled people are explainable, acceptable or justifiable.”

Yet these tweets don’t only express radical acts of violence against disabled people, they also illustrate everyday ableisms and the way that the language of ableism is entrenched in every aspect of our society.

Charles Hughes points out that ableist society can only view us as “good cripples” when we are being “inspirational”; “If you love us when we’re adorable or ‘inspirational,’ but try to shut us down when we’re assertive or uncompromising, then #UHateDisabledPeople”. Hughes brings attention to the common trope of the “good cripple”, and the notion in ableist society that disabled people constantly need to be grateful for even the basics of accommodation or support afforded in our society.

Eli points out in their tweet issues around the unemployment of disabled people and the fact that it results from ableism and the entrenched belief that disabled people can’t work while ablist people still say that we disabled people should “get a job”. Eli states “When you think disabled people should get a job but you won’t hire us #UHateDisabledPeople” Eli illustrates the contradictory messages from our ableist society that we SHOULD work, but simultaneously that we CAN’T work.

Imani Barbarin observes the entrenched idea that disabled people don’t need to leave their houses and therefore don’t need to be accommodated by public spaces or public services when she states in her tweet “If you can’t think of a reason for disabled people to leave their house, other than to go to the hospital, UHateDisabledPeople”. This is a key issue since Barbarin and others on Twitter have been recently talking about rideshare and other services denying access to disabled people and then leaving us bad reviews because those services refused to accommodate our needs as disabled people (for example, denying access to people with service dogs, refusing the delivery of food to people with mobility disabilities).

Several people have brought attention to the assumption by the public that disabled people are “faking it”. For example, “Lilo the Autistic Queer” states in their tweet “if you harass strangers because you don’t think they should park in the accessible spot and/or sit in the accessible section on the bus/train #UHate Disabled People.” “Lilo the Autistic Queer” observes that people often act as though if they can’t immediately see our disabilities then we must be “faking it”.

Catherine Paul elaborates on this entrenched belief that disabled people are faking it, stating “If when you see a chronically ill person having a good time, you think they must be faking their illness, #UHateDisabledPeople.” The social assumption that we disabled people are “faking it” means that a huge amount of money is wasted on investigations into our claims of disability and often results in huge amounts of money that should be allocated to disability supports instead being allocated to investigations into our disabilities. So strong is this entrenched belief that disabled people are “faking it”, that people on the streets frequently believe they have a role in telling us they don’t believe we have disabilities or attempting to kick our canes out from under us or push our mobility devices. Indeed, Kaitlyn @BlytheByName points out the experience of purposely being bumped into in this tweet: “When you purposefully bump into me while I’m walking with my cane to test if I ‘really need it’ UHateDisabledPeople”.

Walela Nehanda illustrates how often disabled people are assumed to be “faking” their disability or trying to “scam” or “cheat” the system by saying “If you beleive disabled people are ‘faking’ our conditions because our disabilities don’t present in a way you’re accustomed to or because you think we are trying to ‘scam’ people or ‘cheat’ the system #UHateDisabledPeople”. Frequently abled people assume that they should be able to immediately look at us and then diagnose us with a glance and dismiss us as non-disabled when they can’t see our disabilities at a glance.

Not surprisingly, abled responses have varied from dismissing disabled people’s experiences to threats and doxxing.

“Diary of a Disabled Person” states “Okay, now I’m getting actual abuse from people over #UHateDisabledPeople, mocking my assumed lack of intelligence and inability to speak. Is it going to stop me? No fucking way. Is it going to get you reported? Damn right it will. Each and every one of you should be ashamed”. “Diary of a Disabled Person” is not the only person to receive threats, comments about their intelligence, and comments about their right to speak. This is happening across the hashtag.

“Dame DuhLaurien” dismisses the experiences of disabled people by saying “I think ‘hate’ is an awful strong word for the kinds fo things I’m seeing complained about in the #UHateDisabledPeople tweets but regardless cant we get #ULoveDisabledPeople.” In this, “Dame DuhLaurien dismisses the experiences of disabled people as minor, even though many of these tweets involve discussions of physical violence, exclusions of rights, and outright murder (as illustrated above). “Dame DuhLaurien” calls these experiences “complaining”, reinforcing the idea that disabled people shouldn’t express our frustration with everyday ableisms. “Was God In The O.R.” responds to “Dame DuhLaurien” by saying “Because y’all don’t love disabled people Lauren. Disabled people are denied access to food delivery, rideshare services, and public transportation, DAILY. And when we get on the internet to vent amongst ourselves, we’re made fun of, threatened, and doxxed. #UHateDisabledPeople”. “Was God in The O.R.” points out that people often use the words “we love disabled people” while continuing to perpetuate our oppression on a daily basis, illustrating that we, as disabled people feel the constant hate from an ableist society.

“TheDisabledEnthusiast” responds to “Dame DuhLaurien”‘s post with “If you think disabled people have to call out ableism in a way that’s more comfortable to you, #UHateDisabledPeople. You didn’t even bother to understand or sit with the meaning of the hashtag before you decided you were too uncomfortable and needed to shut it down.” “TheDisabledEnthusiast” points out the snap response that abled people have when being called out for their ableism and the instant response of tone policing disabled people rather than listening and thinking about what we are trying to express.

Imani Barbarin “Crutches&Spice” responds to all of the violence against the #UHateDisabledPeople hashtag by saying “people can troll my hashtags all they want. 1. They’re contributing to the numbers. 2. They’re proving my point. 3. The people who didn’t believe us can no longer ignore how widespread the problem is. Thank you for your time”. Barbarin powerfully points out that all the people who are denying the violence against disabled people only need to look at the violent responses to our tweets in order to see the entrenched ableism against us. Yet, she also points out the power of disabled twitter by observing that when our voices come together and we express the violence we’ve experienced – even if it is only by re-tweeting or liking a post – we are illustrating the common violence that we all experience.

Hashtags like those created by Imani Barbarin illustrate the power of our collective voice as disabled people. They are a way of creating community and collectively pouring out all of the violence and hatred we have experienced. Sharing a Twitter thread like this is confirmational for us, illustrating that we are not alone in our experiences. #UHateDisabled people is a strong hashtag because strong language NEEDS to be used. We are experiencing systemic violence and are constantly told to be quiet and accept the violence we are experiencing every day. Hashtags like this illustrate the power of collective storytelling, the power of sharing our narratives together and giving voice to everything that has happened to us. They create community as they advocate for change. As Barbarin states “The people who didn’t believe us can no longer ignore how widespread the problem is”.

“Truths”, Fantasies, And The Stories We Are Told About Ourselves

“Truths”, Fantasies, And The Stories We Are Told About Ourselves

By Derek Newman-Stille

 

We disabled people are asked to tell our stories over and over again. We are asked to narrate our bodies and the difference of our bodies again and again. When we meet with doctors we have to tell the stories of our bodies (and often have to retell them until they fit the medical model that doctors need to understand our bodies). The same happens when we meet specialists. We need to narrate our bodies to employers to get accommodations, to schools to get access to resources, to funding agencies, to government officials when we need additional supports, and, yes, even to strangers on the street.

 

I recently had someone follow me down the street for multiple blocks asking me what was “wrong” with my body, asking me to tell him the story of my body. This was happening despite the fact that I was having a conversation with my friends that this guy was interrupting. He believed his own demand to hear the story of my body overrode the conversations I was already having. I told him that I didn’t want to tell the story of my body to a stranger, and like most people who I tell this to, he became enraged, told me that I was rude and that he was just curious, and then he said “besides, I am a PSW, so I am an expert on people like you.”

 

This is not a unique experience. It happens regularly. I am frequently bombarded with questions about my body by strangers, and many of those strangers (who have no disabilities of their own) then believe themselves to be experts on my body and tell me that I don’t really need to use my rollator or my cane, that I can cure my disability with crystals or yoga or positive thinking or walks in the woods or “blu-ray healing”. The narratives people place on my body abound and they come from a society that tells able-bodied people that disabilities are the purview of the public, that our stories are open to their interpretations and their adaptations.

 

Often the stories of our bodies preclude us even being part of them. Frequently, when our bodies are written about by “specialists”, their stories of our bodies continue on without our own narration, telling stories about us. This seems like it should be something unusual, to have our stories told by other people, but we need those stories told by people who are “specialists” on our bodies in order to get access to many of the accommodations we need. Our stories become papered entities – accommodation letters to professors, medical notes, specialist reports. Our stories are told and retold and we are not considered experts on our own stories. In fact, we are considered inherently biased and our stories are rendered as problematic, fictitious, and yes, even fantastic. 

 

This rendering of our own stories as fictional extends into publishing about disabled bodies, where, frequently, our actual stories about our disabled bodies – told from our own experiences – are considered less authentic than stories told about disabled people by able-bodied others. Like many disabled authors, I have been told that my factual rendering of my disability’s story is not believable, that it doesn’t match with what audiences want or believe, or that it doesn’t ‘ring true’ for a disabled narrative. Publishers and editors are much more interested in the papered story about disability, the one constructed through things they have read before – the story full of tropes about disability. This isn’t surprising (even though it should be) because disabled stories are often inauthenticated, are often rendered as less worthwhile than the people who claim to be experts on our bodies. We are accustomed to this. We get it from doctors, politicians, and others who consider themselves to be experts who render our stories for others, who erase the personal in order to create a fantasy about disability. 

 

So, with all of the fantasies already created about disability, the fictions that are constructed around our bodies because these fictions are considered more realistic than our own tales, are there possibilities for us to reshape those fantasies? Can we assert our own tales through the unbelievable, the magical, the imaginative, and use these stories to reshape the way that our bodies are treated as fantasies? 

 

There is a huge potential in fantasy for operating on the level of imagination, for operating in the realm of the un-real. We disabled people have so often been told that our stories need to be retold by specialists in order for them to be considered real that there is a liberation in telling a story that we don’t have to be x-rayed, MRIed, assessed, and narrated before it can be considered true.

 

Abled people are constantly believing things about disability because they have been told that imaginations about disability are “true”, so there is a power in challenging thoughts about disability at the imaginative level, at the level of possibility, and therefore to introduce new possibilities for thinking about disability, for imagining us.

 

Although I have heard from fellow disabled people that what we need is real change, often we forget about the power of imagination as an agent of change. We create change by imagining new possibilities, by thinking up new alternatives, and by challenging what we think of as “truths” because frequently when something is portrayed as “truth”, it is stagnated, constructed as unchanging and unchallengeable. Fantasy stories about disability open up disability itself to imagination, let disability as a subject be something that is fluid, changeable, reimaginable, and adaptable. 

 

As disabled people, we already live in a world of fantasy. We live in a world that pretends that we are invisible, in a world where words – when wielded by policy-makers – can magically take away everything we need. 

 

We have the power to use those fantasies to remake our world, to reforge it as one that includes us, and, not only that, but represents us, and even, dare I say, celebrates us?

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.

 

 

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.

 

Narrating Blindness

A review of Rod Michalko’s “Explain Yourself” in Things are Different Here (Insomniac Press, 2017)

By Derek Newman-Stille

In “Explain Yourself”, the first story in his collection Things are Different Here, Rod Michalko exercises his characteristic wit and sense of play to bring attention to the way that sighted people are always asking blind people to explain how they became blind. Michalko plays with the overall notion of storytelling within the story by having a character, Jason, who invents stories about how his friend Matt became blind whenever he is asked. Michalko explores the subversive power of storytelling, using fiction as a mode for opposing ableism in public spaces. 

Frequently the able-bodied feel that they have a right to demand narration by disabled people, asking us how we became disabled and wanting us to give them our narrative. They frequently ask us how we became disabled out of an attempt to ensure that they don’t fall into the same “tragic” circumstances. There are power dynamics to that demand for us to narrate, and “Explain Yourself” is a story narration that is an act of resistance, a commentary on systemic ableism and the power of storytelling as a mode of resistance. Michalko is best known for his academic work in disability studies, but this shift to fiction stories is also an act of education (and I don’t mean that in the way that people often mean “educational” sources on disability – i.e. stories that explain our bodies). Michalko brings his readers into the critical questions and ambiguities that fiction does so well.

“Explain Yourself” is a tale about Matthew, a blind man, and his friend Jason, who is sighted. These two met at the gym and have a friendship based on mutual humour. Instead of people asking Matthew directly about his disability, they ask Jason because they are too uncomfortable speaking to Matthew directly, but still have their curiosity and ableist privilege to feel the right to question Matthew’s body. Jason had not asked Matthew how he became blind throughout the history of their friendship, but decided to let Matthew know how often he gets asked about blindness. 

Michalko uses this narrative to bring up critical questions about able-bodied allies. His character Jason interrogates why he feels proud to have a blind friend, and how he feels about narrating a blind man’s story as an able-bodied person. Like much of Michalko’s scholarship, “Explain Yourself” is an exploration of narratives – who gets to tell them, how they tell them, and what they mean.

To discover more about Things Are Different Here, visit http://www.insomniacpress.com/new-books.html