Knitting Narratives Together

A review of Embroidered Cancer Comic by Sima Elizabeth Shefrin (Singing Dragon, 2016)
By Derek Newman-Stille

Sima Elizabeth Shefrin takes a fascinating approach to comics, creating a comic out of textiles, embroidering her narrative onto fabric. There is a sense of intimacy about using textiles to talk about cancer that links the artworks produced to the history of textile work in the home. The use of embroidery, for me, evokes memories of embroidery samplers on the walls of the home, and transforming this textile basis into a comic allows a sliding of forms between the usually stagnant stitched image and the dynamism and mobility of the comic book. 

Shefrin’s Embroidered Cancer Comic deals with the complexity of cancer and its presence in the home, exploring the disease not through its pathology, but through the effects it has on the family. Shefrin openly shares her experiences of her husband’s cancer and the intermingling of their feelings from his diagnosis through to his surgery. She examines the way that people try to take control over their cancer narratives either by changing their diet, or by avoiding the doctor, instead using alternative health practices to try to avoid medical intervention. 

This is not a typical tragedy narrative of cancer, and Shefrin brings humour into her narrative, evoking the complex feelings of her readers, who are brought along through her emotional journey. Shefrin doesn’t shy from the personal either, bringing us into spaces of intimacy like the bedroom where readers can engage with questions about relationships where sex isn’t always possible, or isn’t possible in the same way as it was before. 

Shefrin evokes the idea of change and transformation, using stitches to bring narratives of adaptation to life, exploring the way that bodies and their interactions shift when cancer is introduced into them. 

To discover more about Embroidered Cancer Comic, visit http://www.singingdragon.com

To discover more about Sima Elizabeth Shefrin, visit http://www.stitchingforsocialchange.ca/home.htm

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.

19622630_1900861226861010_1210492473_n

 

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.

 

19756239_1900861260194340_314787502_n

 

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

Spatializing Disability and Considering Belonging 

By Derek Newman-Stille

Access. Access is a central issue for disability since we live in a society that only creates space for able bodies. It assumes a singular bodily ontology and our physical spaces are moulded to conform to that single body. Those who don’t fit the mould are expected to make our bodies fit, to modify our bodies, movements, interactions to fit with a singular interpretation of space. 

In this construction, we are made exiles in our own homes, in our own cities, towns, and villages. We are expected to accept our position of non-belonging in our own spaces, assumed to be comfortable with all of the responsibilities of citizenship, but without the basics of belonging that citizenship claims to offer. We are imagined to be content on the fringes, margins, and edges, those few spaces that accommodate our bodies and provide us with access. 

So what does this mean for our notions of home? How do we disabled bodies fit in to a nation state that has geographic boundaries but makes these geographies inaccessible to us? How do we gain access?

Perhaps the disabled body provides us with a space for re-thinking belonging, for critically questioning how we can occupy and take up space. 

Our bodies are perceived as awkwardly occupying space. We notice this through the states we evoke, the way that we are both hypervisible (stared at) in public spaces and simultaneously invisible (particularly when we need help or when city planners develop architecture). Yet, maybe this positions us as bodies that are able to CHALLENGE ideas of belonging that exclude, maybe this positions is as radical bodies in a space that seeks to pacify through the rhetoric of normalcy (that is constructed only to make bodies and identities not belong). 

Maybe we need to consider belonging and citizenship trough the lens of access. Maybe we need to think about exclusion and barriers to belonging when we think about how we occupy or are made unable to occupy our spaces.

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.

A Graphic History of Deaf Schools and Audism

A review of Carlisle Robinson’s The Case of Victor Gray By Derek Newman-Stille

Deaf history is wrought with oppression at the hands of hearing people, and the Deaf residential schools frequently prevented access to sign language, forcing students to instead use spoken English and rely on speech reading. Often Deaf students taught each other sign language in secret on the playground or in the hallways of schools, and, when caught, could receive punishment for learning their own language. 

In The Case of Victor Gray, Carlisle Robinson creates a historical fiction narrative based on the lives of actual Deaf students and teachers. He explores a Deaf teacher who has to fight against a system that prevents students and teachers from using their own language. Robinson portrays Victor Gray as a beloved teacher of Deaf students who taught in a combination of English and sign language, often using ASL (American Sign Language) storytelling as a reward for learning. Robinson draws Gray as a character with an animated body, hands, and face, illustrating the whole body experience of sign language. Gray is a character whose emotions and expressions exude from his body. 

Yet, Gray has to come up against a system that wants to force conformity on the Deaf population rather than allowing Deaf Culture to provide a space for Deaf expression. Robinson examines the history of Deaf schools being run by hearing people and the attempt to force the conformity of teachers and students into a hearing-only system. Gray attempts to resist this oppression of Deaf Culture, pointing out the usefulness of sign language for the education of Deaf students, and even resisting hearing culture by signing to the administrators who are attempting to erase ASL from his school. Gray eventually finds himself unemployed for trying to teach his students in the way that is most effective for them.

Gray is pathologized for his resistance and his attempts to ensure that his students can learn effectively, and, like many Deaf people in the 1930s, is treated as though he is mentally ill for resisting the hegemonic power of a hearing-only system. 

Although a tale of historical fiction, The Case of Victor Gray highlights issues inherent in the history of Deaf education, and, particularly, the stigmatization of ASL. Carlisle Robinson expresses the constant pain of a history of cultural erasure and oppression in The Case of Victor Gray, giving voice to the continued legacy of oppression and the impact that this continues to have on Deaf lives. Using a graphic medium, Robinson allows the reader to look into history, to see the richness of Deaf culture and the pain of oppression, making eye contact with figures from historical contexts. 

To discover more about The Case of Victor Gray, visit http://www.carlisle-robinson.com/the-case-of-victor-gray/ 
To support Carlisle Robinson’s work, visit their patreon account at https://www.patreon.com/carodoodles

The Reaper Cat

A review of Juliet Marillier’s “The Gatekeeper”in The Sum of Us edited by Susan Forest and Lucas K. Law (Laksa Media Group, 2017)
By Derek Newman-Stille

In 2007 reports abounded of a cat in Providence Rhode Island who predicted the deaths of more than 100 residents in an older adult care home. Oscar, the “miracle cat” was worked as a therapy cat for the residents and was reported on by geriatrician David Dosa in an article in the New England Journal of Medicine. Dosa reported that Oscar would nap near patients a few hours before they would die, and he eventually wrote the book.

Oscar evoked a number of questions by the public around omens as well as the ability for cats to smell impending death. Oscar was also the inspiration for Juliet Marillier’s short story “The Gatekeeper”.

Highlighting a cat in a collection of short stories about caregivers and caregiving evokes the interesting relationships between humans and animals, and the emotional labour that our pets do for us. Marillier’s cat, who names himself Cat even though everyone around him has a different name for him based on the cats that they had when they were younger, constantly works to make sure that the residents feel safe and cared for. Marillier brings attention to the constant work that cats do, ensuring that their humans are emotionally healthy and well. Cat has integrated himself into the care routines of the older adult care home where he is working, checking on patients when human staff aren’t sufficient in the care home for the care needs of the population. Cat is often with patients at their deaths when human staff are busy elsewhere. 

Marillier writes Cat as a servant of the Egyptian cat goddess Bast, and Cat believes he has a religious duty to make sure that he can give comfort to human beings, and, particularly those human beings who are transitioning into death. Rather than simply being part of the expectations of a pet’s role, Cat’s care for humans becomes his religious duty, complicating ideas of care.

In “The Gatekeeper”, Cat’s role is questioned and he and the man who rescued him and brought him into the home, Tariq, may have to leave because the home, with its strict policies considers the presence of a cat to be a question of hygiene. Rather than listening to residents about the importance of having a therapy cat, administration at the older adult care home decides that the cat shouldn’t have a role there. This relationship to the cat is further complicated because Tariq is unwilling to give up Cat (who he names Hamza), and, as a result may lose his job. Tariq is Afghanistani and has precarious employment in Australia due to his immigrant status. He is perceived as unqualified for others jobs that he could have and positioned as a care provider. His loyalty to Cat/Hamza comes into conflict with his need for employment and his ideas of care, a style of care based on personal connections with the residents, is already suspect in an older adult care culture that is often based more on efficiency and bodily needs over the emotional needs of the residents. Cat provides for the emotional needs that a neoliberal health system doesn’t allocate time or funds for. He provides care for the price of treats and connects residents to feelings of safety, comfort, and memory.

Marillier’s “The Gatekeeper” operates in the realm of speculative fiction to open up critical questions about health care and ideas of quality of life, while focusing her narrative on human-animal relationships. She brings attention to the devaluing of emotional labour and care work, highlighting the therapeutic potential of human-animal interactions, and human-human interactions in a home. She provides a cat’s eye view of the nursing home system, taking the narrative out of the hands of doctors, nurses, and PSWs and envisioning a new type of care work. 

To discover more about The Sum of Us, visit http://laksamedia.com/the-sum-of-us-an-anthology-for-a-cause-2/ 

To find out more about Juliet Marillier, visit  http://www.julietmarillier.com/ 

Signs of a Powerful Graphic Narrative

A review of Carlisle Robinson’s What QQ Vol 2 
By Derek Newman-Stille

Carlisle Robinson begins What QQ Vol 2 with a lesson for hearing readers in how to address Deaf people. Carlisle points out that the vast majority of hearing people assume that everyone else is hearing and when people don’t answer, they assume this is an act of rudeness, rather than Deafness. 

Carlisle reminds readers that English is their second language and ASL (American Sign Language) is their first language, noting that the comic is an act of translation, an act of storytelling in a foreign language. This is something incredibly significant to bring attention to. Most hearing people assume that ASL is simply a gestural form of English, when, in fact, it has a different grammatical structure, different idioms, and is a different modality of language. This means that translations into English can have grammatical differences. 

Carlisle shares a nightmare as part of the What QQ Vol 2 comic, a post-Trump election nightmare where racist, homophobic, ableist people are given a place to attack those of us who are queer, disabled, or non-white. Carlisle has a character encounter someone who is wearing a “Make American Great Again” shirt who begins calling Deaf people “retarded” and queer people “faggots”. Carlisle observes that this nightmare didn’t come out of nowhere, but is based on events that are occurring in the United States, and now also in Canada, where Carlisle has made their home. 

Not everything in the comic is political, nor does it all reflect depressive realities of being in an ableist, homophobic world, some of Carlisle’s geek humour comes through in this comic as well. Carlisle points out that Spiderman’s web-shooting hand looks like the ASL sign for “I love you” and that, therefore “He fights with Love”. 

Carlisle’s comics pages often combine signs, with the character actually carrying out the signing. This is unlike signing depictions in other comics, which frequently use ASL figure graphics. However, because of the static medium of the comic image, Carlisle often depicts a large amount of text on the page, and freezes the frame with only one sign (and often only one part of the sign) visible. 

Since Deaf populations rely heavily on body and facial expressions, Carlisle’s use of expressive character faces is important for conveying essential meanings to the reader, providing emotional and situational context that complements the text. 

Carlisle combines information for hearing people about Deaf populations with tales meant for the Deaf population to enjoy, linking these together into a collection of stories about their experience as a Deaf person. 

You can find out more about Carlisle Robinson’s work at http://www.carlisle-robinson.com or check out their tapastic account at tapastic.com/carodoodles .
You can support them at https://www.patreon.com/carodoodles