Tag Archives: community

#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”.

Longing for A Deaf Community

Longing For A Deaf Community

A review of Raymond Luczak’s “Mafia Butterfly” in Nothing Without Us (Renaissance Press, 2019)

By Derek Newman-Stille

Raymond Luczak’s “Mafia Butterfly” is pure Deaf Pride. Luczak explores the powerful intersection of femininity and Deafness with a character who turns off her hearing aids so she doesn’t hear catcalls, who challenges men who try to reduce her to her body, and who recognizes that the second she speaks and they recognize she is Deaf and uses sign language, they realize that “suddenly they’re not in power”. 

Luczak points out the double violence that Deaf women experience, both because of their Deaf identity and because of their gender identity, having his character comment on the ableist, sexist comments that “Deaf people are supposed to be great in bed because they don’t know how to say no” and that because of her Deaf identity, she is perceived to be “all about the body”. He explores the frustration at a family that refuses to learn to communicate with her, pointing out that she decided to take speech therapy for her family’s benefit but they won’t take time to learn ASL. 

Luczak gives the reader insight into the joy that people in the Deaf community experience when they are able to connect and use ASL with his character saying “when I tasted the forbidden fruit of Sign, I suddenly realized that I had been sleeping all my life in a cocoon”. ASL is not just a way of communicating – it is transformative, bringing his character life. She experiences pride in her identity, describing herself as “I wasn’t just deaf; I was Deaf. Capital-D!”. Deaf identity was powerful for her, allowing her to find a history, a culture, and a language. 

Yet Luczak also explores violence between members of the Deaf community and bullying by people who assume positions of power. Luczak’s narrator experiences rejection from the community she sought and the identity she needed. 

Luczak gives the reader insights into ASL when he translates signed dialogue into English, preserving the cadence and ‘voice’ of ASL in his writing with statements like “Himself same-same m-a-f-i-a decide maybe you nothing. If happens, worry not. Himself run Deaf community not.” Luczak uses these lines to speak to an audience that knows ASL, while also bringing DeafWorld closer to the hearing world and letting hearing readers experience the need to translate for once. Simple acts like this bring notice to the audism (hearing-centric nature) of our world and the expectation of Deaf authors to translate from ASL for a presumed English reader. 

“Mafia Butterfly” is a tale about the need for a Deaf community. It’s a story about resistance not only to the violence of a sexist, audist world, but also violence within the Deaf community toward members who don’t have the same access to Deaf resources. His narrator asks “why are many Deaf people so afraid about being judged when they choose to befriend a new Deaf person? Can’t they see that it isn’t healthy to dismiss people they barely know? We need more Deaf friends” 

To discover more about Nothing Without Us, go to https://renaissance-107765.square.site/product/nothing-without-us/117?cp=true&sbp=false

To find out more about Raymond Luczak at https://www.raymondluczak.com

Amulets

Amulets

A review of Heidi Heilig’s “The Long Road” in Unbroken: 13 Stories Starring Disabled Teens (Farrar Straus Giroux, 2018).

By Derek Newman-Stille

Heidi Heilig’s “The Long Road” begins like many trope-filled stories about disability does – with a self-loathing disabled character seeking a cure. The trope of “the cure” and especially “the magic cure” is built into a large number of fantasy stories, creating a quest for characters around the discovery of a cure, or having characters use magic to transform their bodies into normate bodies.

The difference with Heilig’s narrative, is that although her disabled narrator begins a long quest with her family wearing protective amulets to ward off evil (since her disability is seen as a marker of evil) toward Persia where her family believes there will be a cure… Heilig switches the narrative, breaking from the typical fantasy “magical cure” trope and instead allowing her character to gradually realize that the notion of “the cure” is a problematic one that causes her to view her body as a problem to be “fixed” and instead starts to question the idea of normalcy, realizing that bodies are far more complex than her family had led her to believe. It is only through finding a disabled community and companionship with another disabled person that Heilig’s protagonist is able to begin to re-assess everything she has taken for granted as “truth” for so long.

Heilig reminds her readers that we frequently find knowledge and new ideas within our own disabled community and that we construct our own community as we find other people like ourselves who don’t make us feel like outsiders or exiles. Heilig makes the exile literal by having her characters wander the desert in search of a cure, believing that they can return home “normal”, but although her character searches for normalcy (which is so often the fantasy quest attributed to disabled characters), instead she finds the power of community and challenging her assumptions. Rather than a physical transformation, Heilig presents her readers with a transformation in thought and perspective, an awakening to new possibilities for disabled existence rather than the erasure of disability.

To find out more about Unbroken: 13 Stories Starring Disabled Teens, visit https://us.macmillan.com/books/9780374306502

To discover more about Heidi Heilig, visit http://www.heidiheilig.com

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

An Act of Recovery

A review of M.K. Czerwiec’s Taking Turns: Stories from HIV/AIDS Care Unit 371 (Graphic Medicine, 2017)

By Derek Newman-Stille

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A graphic novel about a nurse’s experiences in an HIV/AIDS unit during the peak of the infection and when the infection didn’t have treatments that prolonged life as they do today seems as though it would be a depressing tale, and indeed it was. But, this was not just a tale of lives lost and the pain of losing friends and family, this tale was one of mutual support and community.

 

The history of AIDS is one that is enwrapped in Queer history, and like many parts of our history, it is erased. Unlike many other cultures, Queer culture isn’t passed down through family lines from one generation to the next. We often rely on members of our community to share the Queer history that they have uncovered.

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M.K. Czerwiec helps to bring the history of the Queer community’s interactions with AIDS to new generations, letting us connect to aspects of our history not through the distant medium of history books that often bleed all of the emotion out of a historical event, but rather through her own personal experience with AIDS as a nurse who worked with people who were infected. In “Taking Turns”, Czerwiec shares her own story and how it touched multiple parts of the Queer community and the medical community as they engaged in a shared experience of AIDS. This is not a distant, pathological story, but instead one that is intensely personal, real, and relatable.

 

The medium of comics is one that was intensely powerful for the story of a nurse in an AIDS care unit because it prevented the sort of cool standoffishness that often occurs when we talk about AIDS, a distancing technique that we frequently use to pull ourselves away from the memory of those lost to the virus. But, with a comic, the reader looks directly into the eyes of the patients. We see their transformations as the virus progresses. We see the medical equipment that surrounds them and shapes their existence.

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“Taking Turns” is an embodied experience where the story can’t be distanced from the bodies of the people involved. They are always present in the reader’s vision, preventing any pathologized readings or distancing. M.K. Czerwiec invites her readers into her world and her own history, making sure that we understand AIDS beyond the medical models we often receive.

 

When I was growing up, those of us in the gay community received constant warnings about AIDS. AIDS was constructed as the boogeyman haunting every sexual encounter. Posters were everywhere at gay clubs and in health units, warning us that we were one thin piece of latex away from certain death. These posters generally featured images of condoms or drops of blood or needles, but rarely let us see the human faces behind AIDS, the people who experienced the virus. This contributed to a lot of the fear around AIDS and the fear directed toward people with the virus. Czerwiec’ comic is one that I would have liked to have read as a young Queer person. It would have helped to humanize the people who had AIDS in our community instead of distancing us from them. It would have been a reminder that we, as a Queer community, need to pull together and protect and support our community.

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“Taking Turns” is a painful narrative, but, more than that, it is a hopeful one – a tale of community coming together in a culture of care. It is a body story, one that is fundamentally about embodiment and the experience of living. So many AIDS narratives are about death and this one is also about life.

 

You can discover more about Taking Turns from Graphic Medicine at http://www.graphicmedicine.org

You can explore Taking Turns further at http://www.psupress.org/books/titles/978-0-271-07818-2.html