Tag Archives: medical

“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?

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The Cinematic MRI

A review of Paul McGuigan’s “Victor Frankenstein” (Davis Entertainment Company, 2015).
By Derek Newman-Stille

I’ve been giving thought to the cinematic gaze lately and the way that is configures disabled bodies. Frequently camera angles focus in on bodily difference, breaking disabled bodies on screen into dismembered parts – zooming in on prosthetic legs, panning to blind eyes. The camera breaks the disabled body up into parts of difference, divorcing it from its bodily context and from the personhood associated with it. 

This figuring of the disabled body as parts mimics the medicalized lens, brining attention to individual parts of the body in isolation, as pathologies rather than parts of a bodily and identity wholeness. Much like the freak show and the medical theatre, film seeks to break people down into their parts

“Frankenstein” was written by Mary Shelley as a body text, exploring the idea of how life and death are entwined into bodily existence and examining the perception of medical science that it could conquer the body and bring nature to heel. 

In the many adaptations of her text, the monster’s body has taken an iconic voice of its own, the monster losing his original eloquence to become the childish, silent figure of film, a creature that was all body and no voice.

Paul McGuigan’s film “Victor Frankenstein” continues his bodily silence and performs the medical apparatus of the body. Building on the investigative lens used by the BBC’s Sherlock, with camera panning into key pieces of evidence, the camera work of “Victor Frankenstein” takes a medical investigative approach to the body, giving both Victor and Igor the ability to see the inferiority of bodies, medically diagnosing them with a glance. Bodies are written over by anatomical drawings, writing skeletal and cardio-pulmonary systems on the exterior of the body.

The body is rendered a passive object, offering up its inferiority to the diagnostic gaze.

We first get introduced to Igor at the circus where he is functioning as part of the freak show due to his hump. He becomes the circus medic through private learning and thus has the potential to complicate the notion of disabled body/ medical doctor by inhabiting both roles. However, when first seen by Victor Frankenstein, he is rendered a passive subject by Victor’s medical gaze, prefiguring him as an object in the same way that people witnessing the freak show had done. 

Freak show transforms into medical theatre when Victor takes Igor, still treating him as property, and alters his body without his permission, piercing his hump and forcing him into corrective clothing to adjust his posture. His body becomes property of science and he loses any ability to disrupt the simple binarism of medical practitioner and medicalized body offered by his own knowledge of medical science.

Igor is partially complicit in his own enfreakment, desiring normative bodied identity and visiting a medicalizing lens on the body of the monster that he and Victor construct as a medical fix-it for death. 

Victor Frankenstein” constructs an enhanced medicalized lens by not only focusing the camera on parts of the body that are non-conforming to ideas of bodily normalcy, but also by rendering the interior of these bodies onto the externality of the body, turning the camera into medical equipment – part cinematic camera and part MRI. This lens, combined with the treatment of bodies as open to experimentation and modification, marks the film as one of disabled bodily passivity and medicalized control. 

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

Obsessively Complex

A review of “The Bad Doctor: The Troubled Life and Times of Dr. Iwan James” by Ian Williams (Graphic Medicine, 2015)
By Derek Newman-Stille

“The Bad Doctor” by Ian Williams is a tale of the entwined experience of a doctor and his patients. Unlike most medical narratives that tend to reinforce the hierarchical position of doctors as the arbiters of knowledge and patients (particularly those with disabilities) as receivers of knowledge, “The Bad Doctor” complicates narratives of disability and medical authority. Williams’ exploration situates Dr. Iwan James as someone who learns from his patients, changing with each medical encounter. He is a figure who combines narratives of disability with narratives of medical experience. 

Dr. Iwan James is portrayed as a doctor who has experienced Obsessive Compulsive Disorder (OCD) his entire life, generally fixating on ideas of the occult as a threat and prayer as a method of averting disasters. Interweaving with narratives of encounters with patients, including one patient with OCD who helps Dr. James re-assess his own compulsive thoughts, Ian Williams also portrays elements from Dr. James’ childhood. Drawn with beautiful trees coming from his head that hold bubbles about all of the things that the young Iwan wants to protect, these pages about his obsessive thoughts illustrate the complexity of OCD. Young Iwan spends most nights going through a series of blessings of each family member, having to repeat these blessings if anyone or anything is missed. Even stuffed animals need a specific number of pats each night to ensure that they are protected. Williams draws circles of light around each of the things that young Iwan wants to protect, linking them together in a complex pattern of thought, and yet these images are also surrounded by caution signs depicting possible outcomes if he misses anyone. As Iwan grows up, he begins to obsess over the occult, believing that his dog died because he listened to occult music. After his wife becomes pregnant, Iwan sees occult imagery everywhere around him and seeks to try to protect his children from their influence. 

Dr. Iwan James develops coping mechanisms for his OCD, able to develop methods to control these obsessive thoughts, but they don’t disappear from the narrative. This is not a narrative of disability where there is an easy solution through a “cure”. Rather, Dr. James’ continued work on himself allows him to be a better doctor, to engage with patients from a place of knowledge, but not of arrogance. Instead, he is able to share his narrative with patients to help them to better understand themselves and their own compulsions. Dr. James still has persistent thoughts and continues to have suicidal ideation from time to time and these suicidal thoughts enter into the comic page in imagined scenes of shooting himself in the head or guillotining off his own head. Ian Williams illustrates the way that these thoughts can interrupt everyday narratives by inserting them between panels, at random, evoking the power of suicidal thoughts to seep into the mind during every day encounters.

Told through powerful snippets of encounters with patients and intense flashbacks of obsessive compulsive thoughts, “The Bad Doctor” creates a complex view of medicine and the relationship between an individual and the medical system. 

To discover more about “The Bad Doctor”, visit Graphic Medicine’s page at http://www.graphicmedicine.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