Harvard University owns a book bound in skin excoriated from the back of a woman who died institutionalized for mental illness.
She did not consent for this man to slice the skin off her back. He just took it, because he was a doctor and he could: perhaps the most literal expression of how disabled bodies are not allowed boundaries.
Skin is what makes a body a body.
There are three qualities that separate life from non-life, according to Astrobiology Magazine.
Quality #1: An “identity,” a body with a boundary between it and the world, to form a “bag of chemicals.”
Without skin, we have no boundaries; without skin, the proteins and gases and enzymes and blood inside of us have no bag to contain them. Without skin, we have no identity.
And a doctor, in a final act of violence, took this patient’s only boundary between her body and the world. He took her identity.
All we know is she died of apoplexy. We do not know her name, for the good doctor never thought to record it.
“This book is bound in human skin parchment on which no ornament has been stamped to preserve its elegance. By looking carefully you easily distinguish the pores of the skin. A book about the human soul deserved to have a human covering: I had kept this piece of human skin taken from the back of a woman. It is interesting to see the different aspects that change this skin according to the method of preparation to which it is subjected. Compare for example with the small volume I have in my library, Sever. Pinaeus de Virginitatis notis which is also bound in human skin but tanned with sumac.”
He fetishized her skin, gazed at its pores, thought it “elegant.” It raises questions, for me, of what other boundaries he might have crossed, before her death.
In fact, this doctor bound that other book he mentioned in (it seems) the same patient’s skin: De integritatis et corruptionis virginum notis, a tome containing detailed descriptions of the hymen & how to examine it for signs of lost virginity. Inside, he wrote, “This curious little book on virginity, which seemed to me to deserve a binding in keeping with its subject matter, is bound with a piece of woman’s skin that I tanned myself with some sumac.”
Disabled people suffer much higher rates of sexual violence: our bodies are not allowed the same boundaries.
Des Destinees de l’Ame:
Notice I have not named the doctor. It is intentional. He who commits an unspeakable offense shall remain unspoken.
To prove a book is bound in human skin, you can’t just perform DNA analysis: so many hands have touched it, it could be contaminated. Maybe it’s goat skin but your test comes back with touch DNA from a random library patron. Maybe the good doctor had his mitts all over the body, and then the book. You could study the pores and hair patterns to differentiate from animal vellum or parchment, but it’s too subjective. Instead, you have to analyze the collagen peptides.
Microscopic samples were taken from various locations on the binding, and were analyzed by peptide mass fingerprinting, which identifies proteins to create a “peptide mass fingerprint” (PMF) allowing analysts to identify the source.
“The PMF from Des destinées de l’ame matched the human reference, and clearly eliminated other common parchment sources, such as sheep, cattle and goat. However, although the PMF was consistent with human, other closely related primates, such as the great apes and gibbons, could not be eliminated because of the lack of necessary references.”
This woman is reduced down to collagen, connective tissue. Her skin contains a body that is not hers, a story she did not write. Does she agree with Arsène Houssaye’s philosophy of the soul after death? For that is now her genetic code, the letters that make up her body, her anatomy, her organs.
This is violence.
censure or criticize severely.
“the papers that had been excoriating him were now lauding him”
damage or remove part of the surface of (the skin).
Censure, remove skin: for this doctor, there was no difference.
express severe disapproval of (someone or something), especially in a formal statement.
Is a book about the soul after death a formal statement?
Think of William Corder, who upon his murder conviction was sentenced to hanging and dissection by doctors, who excoriated skin to bind a book detailing his murder case: the book that censured him for all eternity.
His skin now contained his corpus delicti. It was all he was. There was not supposed to be a question for him of the soul after death. Just this: his crime, his confession, his hanging, for all eternity.
We call the practice of binding books in human skin anthropodermic biblioplegy.
I got it in Deseret Alphabet: the alphabet of the Mormons, of Utah, of testimony. When I got that tattoo, all I had was the police transcript of that phone call–no audio. Deseret Alphabet was my way of making my brother speak his confession.
Speak it from my skin, through my skin: living vellum.
Memories have epigenetic mechanisms, meaning: Every time I steal one of my brother’s memories, I make myself more related to him, genetically.
“We speculate,” wrote Jeremy Jay and David Sweatt in Nature Neuroscience, “that the new understanding of the role of neuro-epigenetic molecular mechanisms in memory formation can answer the long-standing question in neuroscience of why neurons can’t divide.” Neurons, “can’t have their cake and eat it, too.” They can either use methylation to preserve a singular memory, or they can use it to preserve cell-wide identity–a lung cell is not a kidney cell because methylation blots out different genes–but they cannot use it for both.
I am co-opting the machinery of memory for the purpose of reproduction. I am giving birth to my brother from my brain, like Athena popping out of Zeus’ skull. I am letting neurons have their cake and eat it, too.
The body makes tattoos permanent to protect you in life and obliterates them to protect you in death.
In a way, my project to confess for my brother is not all that different from the murderer’s skin binding a book of his own corpus delicti: it, too, is kind of an epigenetic text of sorts, rewriting the story of a body, giving it a new genetics. What’s different is I chose it. It’s my body, my text, my Mutus Liber.
A doctor did not excoriate skin off my back. And my confession is intended to save a soul, not condemn it: this is the real destiny of the soul, the ones we write ourselves.
At my local YMCA, I have experienced ableism and harassment, too.
Subtle ableism greets me at the front door:
I can’t use the revolving door unless someone ahead of me pushes. The accessible door is easier. You could say it conserves my energy.
Staff & others have defended the sign, though, when I called it to their attention. “It’s not directed at you, and the revolving door keeps heat from escaping.”
I get it. Conserving energy matters. YMCA is a nonprofit. They don’t have money to burn. And we’re in the middle of a climate catastrophe.
The problem is, disabled people get scapegoated for energy costs, “wasting” resources like medical plastics, and even climate change. The YMCA knows exactly who they are targeting with that sign.
Perhaps the YMCA hoped non-disabled members might second guess themselves if they snuck through the access door, but the problem is, you can’t always tell who’s disabled. Better to build an accessible entrance everyone can use, while conserving energy at the same time.
Why does it matter? Attitude is an access barrier. It announces who is welcome and who is not, who is a burden and who is not. And if your space doesn’t welcome disabled people, it is already inaccessible before we start talking ramps and elevators.
My husband joked we should stick signs on the treadmills: “Please use the track to conserve energy.” (Of course, treadmills can make walking accessible for some folks, but it’s a damn good point.)
I laughed so hard it hurt. “When you burn fat, you breathe it out as carbon dioxide. Bunch of climate-changing Crossfitters in here!”
It didn’t take long for the attitude on the door to become the attitude on the gym floor.
On the second day of my membership, an abled woman behind me snapped my photo on her iPhone. She didn’t even try to hide it.
I knew what she was up to. It’s a tale as old as time for disabled people: If we’re “caught” doing something abled folks think we shouldn’t be able to do, we get “Miracle in Aisle 3” meme’d. Amazing! Watch as a woman with a cane is totally healed!
Exercising while disabled: damned if we do, and damned if we don’t. If we don’t workout, people blame our disabilities on laziness. If we do, we’re faking. And I’m thin and white, which means I have a lot of privilege. Disabled people who aren’t thin and/or white get policed even more.
Inside, I was howling with laughter at my big break into Miracle Meme fame. It wasn’t like I tossed aside my cane and plyo’d to the peak of Mt. Step Mill. I was pushing pedals on a NuStep machine, for chrissakes, widely used in physical therapy and cardiac & pulmonary rehab. NuStep’s own YouTube features a video laying out the accessibility features for spinal cord injury:
I am not paraplegic, but one of my conditions, syringomyelia, literally means cavities in my spinal cord. I walk with an ataxic gait. My joints like to sublux and dislocate, too, thanks to Ehlers Danlos Syndrome. Between acute injuries, chronic pain, poor balance, and dizziness, I gotta be careful at the gym — and I am.
The NuStep is my holy grail workout machine. I can strengthen muscles, get my heart rate up, and not worry about falling. It also challenges my core to hold my trunk stable, stimulates neural connections, and improves circulation. I can adjust the resistance, too, and focus on activating my glutes (a problem for me that a pelvic floor therapist first pointed out and gave me exercises to improve).
But even if I climbed to the summit of Mt. Step Mill, it doesn’t mean you’re witnessing a Miracle at the YMCA.
After all, abilities fluctuate. Right now, I can’t even use the NuStep because of ankle instability and wrist pain. Instead, I have been riding a recumbent bike. That’s Ehlers Danlos Syndrome for you.
I hope randos on Facebook who 😮 me starring in my very own miracle meme noticed my butt was planted in a seat.
Getting photographed by fellow members sucks. Now imagine staff demanding your medical history.
Not long after the Miracle in Aisle 3 incident, a staff member invaded my personal space as I wiped down the machine post-workout. “Why do you have a cane?” He asked.
First: Never ask disabled strangers this question. They may not want to disclose private medical information, and the backstory could be traumatic — a car accident, an assault, who knows? Your curiosity does not trump their right to privacy.
Some people might argue the guy was just concerned for my safety like the Redditor claimed in AITA, but at no time during purchasing my membership did management require me to explain my disabilities (which are quite visible), provide a doctor permission letter, or any other documentation of my limitations. My safety is my responsibility. I wouldn’t climb on a machine where I could fall. I know better.
And the truth is, anyone can get seriously injured at the gym, regardless of disability.
I answered the question, anyway. I was still new to this Y, excited about my heavily discounted membership but nervous about exercising in public again after so many years at home on a recumbent bike. I didn’t want conflict.
“Well, you got a good workout,” he said. I couldn’t tell if he meant it as an accusation or compliment: faker or inspiration porn.
Later, the same staff member attempted to harass me off the NuStep machine so another member — someone I witnessed riding multiple machines, lifting weights, etc. — could claim it. “How long are you going to be? She likes this machine, too.”
It wasn’t as if I was hogging it. I just sat down. Every member gets 30 minutes on any machine if someone is waiting — longer if nobody wants it. I had waited all week for my shot: Three times, I left disappointed when the accessible machines were all taken. It doesn’t help two NuSteps are broken, one recumbent bike clunks when you peddle it, and another one’s seat shakes.
“I waited all week for this machine,” I said. “And I am not getting off for 30 minutes.”
My husband talked to management, who promised to let the staff member know he was inappropriate. They also promised to fix broken NuSteps & recumbent bikes. A month later, I checked: still broken. I remember when the treadmills were broken, how quickly they got repaired. Maybe there’s a reason the NuSteps got delayed–a hard-to-get part, perhaps–but the machines didn’t even have “sorry–in need of repairs” signs taped to the displays. I’m not sure the Y has any intention to fix them at all.
While we are talking about access to exercise, let’s not forget about missing & broken sidewalks, missing curb cuts, and inaccessible transit–all serious issues where I live.
I love walking, but it’s not safe. Where is the concern for my safety out there? I don’t see abled folks at City Council meetings grabbing the mic and demanding safe transit or sidewalks. In fact, in my city, they have fought tooth & nail against the Master Sidewalk Plan. One guy called sidewalks a “Russian plot”–fake Russian accent and all. (I wish I were joking.)
In a recent NextDoor thread, my neighbors demanded to know why pedestrians walk in the street & get in the way of their cars. “It’s dangerous,” they said. I reminded them they hated sidewalks & now they gotta live with the consequences.
As for me, I go to another YMCA location now, one inside a hospital clinic that partly caters to injury rehab patients & partly to a regular gym crowd. It’s got most everything my old location had (minus racquetball courts & a pool), plus more NuSteps than they know what to do with, accessible treadmills with rails running the whole length, a walking-only track, and no signs on the door discouraging me from hitting the automatic button. The only problem is, it’s clear across town, which considering how strongly YMCA feels about energy conservation 🙄, is kind of strange they want disabled members burning up extra fossil fuel just to snag an accessible machine. Why not make every location accessible?
Then again, it was never only about conserving energy, just like it was never only about safety.
Yesterday, I saw Lisa Oppenheim; Spineat the Museum of Contemporary Art in Denver. I was not expecting it, and I haven’t recovered from it.
When I rolled my rollator into the gallery, unaware what the exhibit was about, I was confronted with life-sized photographs of early 20th century textile workers, backs turned to the camera, their spines curved from repetitive movements and poor ergonomics (Fig. 1).
Spines like mine.
Well, sort of like mine. Those spines bent from hard labor; mine bent from a spinal cord condition and genetic connective tissue disorder.
The last time I was in this gallery, the staff seemed nervous about my body–ataxic, unsteady gait, pushing a wheeled walker–getting too close to the art. They shot me worried glances as I approached the exhibits, as if I might crash into them.
When I saw the Spine photographs, I could not breathe. I had to sit down. I watched as people without mobility aids, with no curves in their spines, paused in front of the photos, and said, “Can you imagine?”
Oppenheim did not take these photographs; she repurposed images she found in the Library of Congress, shot by investigative photographer Lewis Hine during the early 20th century for the National Child Labor Committee. For this exhibit, the photos are all young feminine-coded workers, all with scoliosis. These images alternate with photos developed from color negatives of fabric remnants of the same era, visually connecting the women’s spines to the textiles they produced while playing with digital & textile mediums, as well as means of production.
According to the MCA Denver exhibition catalog, Oppenheim “disrupts Hine’s technical, documentary approach by making us aware of how very human these young women are. Oppenheim opens up Hine’s imagery to see beyond the trauma of industrial production; she invites us to recognize their humanity through an appeal to sensuality.”
I have found no information that Lisa Oppenheim identifies as disabled or has the particular spinal issues depicted in Hine’s photography, which for me, is problematic: it is not her humanity to reclaim. Abled people are always using disabled bodies to claim something about humanity, and apparently, they can get on gallery walls without even taking their own images. This is not usually the case for disabled artists who use our bodies in our work (more on that later).
Here, the subject is a feminine-coded young person seated in a work chair, with a curve in the spine causing the left shoulder to droop. Oppenheim’s white line emphasizes this curve, almost like a yardstick or ruler held against the back. It does not feel intimate, but rather, an attempt by Oppenheim to leave a trace of herself, a physical marker of how she viewed these bodies. They suggest a yardstick for “normality” and a “healthy backbone,” while simultaneously reducing the women’s backs to an aesthetic. It is a kind of abstraction, and to my eye, a representation of the abled gaze–ultimately, dehumanizing rather than humanizing.
In the gallery, I watched how people interacted with the exhibit, and there was a disconnect between the fabric prints & remnants and the photographs. Nobody seemed to connect them, aesthetically, metaphorically, or otherwise.
In Jacquard Weave (Fig. 3), the metaphor becomes literal, the straight lines of the fabric threads reminiscent of the bisecting line in the photographs. Here, it is not imposed, but part of the process of creation–much like the workers’ bodies were created (or exacerbated) by the factory machines.
It raises interesting questions about artistic production and the body, particularly since many arts can be disabling. Dance leaves lasting injury. Painting exposes artists to toxic fumes and carcinogens. Many performance artists injure themselves for their art, Chris Burden perhaps the most extreme example. For me, this also raises questions about the way bodies get used as metaphors.
Oppenheim seems to be comparing her privileged artistic process to that of the factory workers, which might be true in some respects–intense physicality, poor ergonomics–but is wildly untrue in others. The Jacquard loom, she explained to Vice, is similar to photography: “a binary logic, like the presence or absence of light, ones and zeros, or in the case of the Jacquard loom like a punch card that’s empty or full. The relationship between these technologies is there from their beginnings” (Gat). But this reduces factory production and the trauma associated with it to mere aesthetic.
Few people in the gallery yesterday even stopped to read the descriptions or look at the fabric prints. The shock value of the curved backs had already overwhelmed them. As I watched them stand before these images and pity the bodies depicted in them, I started to see their backs as straight lines, too, imposed over the image: abled gazes and abled bodies eclipsing the subjects on the gallery wall.
As a disabled artist who does have these particular “deformities,” I can tell you that my body is not welcome in the museum space. Prime example: my Parallel Stress series.
This photo documents a performance where a sidewalk in my local community ended, thus ending my access. I purposefully struck an excruciating pose that challenges my balance, hurts my spine, hyperextends my knee, and places me in danger of injury. My cane, held in the wrong hand with the forward foot, does little to aid my balance (Fig. 4).
I created it conversation with Parallel Stress by Dennis Oppenheim (Fig. 5):
Dennis Oppenheim also held a painful pose as a way to explore the relationship of the body to the built environment.
On a whim one day, I applied an Instagram Prisma filter to Parallel Stress and the response was disturbing: able-bodied people unanimously declared it much more worthy of gallery space–indeed, much more “artistic” (Fig. 6).
One abled person wrote: This image is absolutely stunning. The original was. But this one is something else entirely.
Something else entirely indeed. Something other than dis art. Something other than the performance piece I was intentionally referencing and questioning. Something other than my body.
Even when I confronted them with the intention of the work, its grounding in performance art, and the problematic nature of erasing a disabled body to suit the abled gaze, they balked. They didn’t think they should be expected to take my art–or my body–for what it is unless I made it palatable for them.
Which is another way of saying: the Prisma filter functioned as a metaphorical cure. Notice how my walking cane disappears into the patterns of the Prisma version, the crook of the handle barely visible. Notice how the built landscape–the very urban planning I was critiquing–dissolves into abstract shapes resembling mountains in the background and the sea at my feet. The space I am straddling is no longer something for which abled people bear any responsibility. It’s nature. The abled gaze indeed tends to see the environment built for it as natural.
Even my hypermobile knee–hyperextended because of my Ehlers Danlos Syndrome–in the original picture gets erased by Prisma. The Prisma filter has rendered me abled.
Another abled person wrote of the Prisma filtered image, “Now THIS ONE belongs on a gallery wall.”
The problem is, the original image has hung on gallery walls. In fact, the museum that displayed it featured a presentation on disability art, and I attended. While I wandered the galleries, I was treated with suspicion and shooed away from “delicate” exhibits–once again, as though I was going to damage something. The staff literally did not recognize me as the performance artist displayed on a large screen on the wall because they couldn’t conceive a disabled body being art. In this space, my body was dangerous, clumsy, and unwelcome.
And in fact, despite it being a busy night at the gallery, with crowds wandering the exhibit, this is what the room in which the disability lecture took place looked like:
Ableds who insisted on a more “painterly” or “abstract” version of my piece also fundamentally miss the critique against the art world.
There is a tendency in performance art for extremism about how far to push the body or what a body should be able to do in performance. I wanted to challenge that idea by pushing my disabled body to limits that, to an able-bodied person, wouldn’t seem extreme at all. I wanted to challenge assumptions about body-based art and what “stress” in relationship to the built environment can mean.
Notice the extreme hyperextension of Dennis Oppenheim’s spine? He gets institutional applause while disabled bodies are erased.
This is also why, for the Parallel Stress series, I have my husband and sometimes-caregiver take the photos under my direction. Abled caretakers, parents, and significant others are almost always believed over disabled & chronically ill people. They also tend to exploit images of us for pity. Having my husband document the performances is an invitation for viewers to consider issues such as consent, credibility, and the subversion of roles: By directing the image, I am testing viewers in a sense. What and who do they believe?
They believe Dennis Oppenheim about his extreme body stress. Do they believe me? Do they understand the trust and consent required to put me into a painful pose that dislocates my joints, challenges my balance, and exposes my vulnerability in the cityscape?
Consent is always an issue where disabled bodies are represented. Abled people often post our images on social media for inspiration porn memes, feel-good pats on the back if they “helped” us with a task, to make fun of our appearance, or to question our disabilities.
Lewis Hine took his investigative photos without informed consent of his subjects. Subterfuge may have been necessary for the investigative nature of his work, but ethically questionable given the private medical, social, and personally identifiable information attached to the images, sometimes even 1st and last name. According to the National Archives:
To obtain captions for his pictures, he interviewed the children on some pretext and then scribbled his notes with his hand hidden inside his pocket. Because he used subterfuge to take his photographs, he believed that he had to be “double-sure that my photo data was 100% pure–no retouching or fakery of any kind.” Hine defined a good photograph as “a reproduction of impressions made upon the photographer which he desires to repeat to others.” Because he realized his photographs were subjective, he described his work as “photo-interpretation.”
Oppenheim, in repurposing these pictures, has once again subjected these children & adolescent bodies–poor, disabled, marginalized–to publication without permission. That they are dead does not erase this ethical problem, and it is possible they have descendants. Hines, of course, had noble motivations of social justice, to stop child labor.
But what are Oppenheim’s intentions?
“These are actually very sexy images of teenage girls. I found that so odd,” She told Vice, when asked what drew her to the images. “They’re classically posed and sexualized images of the backs of girls; there’s no eye contact, no gaze to return. There’s something about them that’s voyeuristic.”
Again, as an abled artist, she is unaware of sensitive disability issues, including the fetishization of disabled bodies. It’s not that these bodies lack sensuality or beauty, but rather, Oppenheim lacks a context for how she views them and uses them. She points to one boy child laborer being dressed in a separate photo as evidence the girls were sexualized (Gat), which is a valid criticism; however, she feels any sensuality she perceives in these “voyeuristic” photos of textile workers translates to ownership–literal ownership, as the titles of Hine’s photos become the titles for her reprints. (Notice, BTW, how the Vice article never probes Oppenheim about disability identity and disability art; curators, art institutions, and art writers prefer not to see disability as an identity.)
She is the one who has wandered into these images as a voyeur: Her stated intention is to rescue these workers’ humanity by presenting their sensuality, and yet, her critique of the original photos is that they already are (in her view) sensual. Never mind the paper covering the workers’ breasts–to me, reminiscent of a medical setting, an attempt to preserve modesty during an examination. What she seems to mean is these bodies must be sensual in a very particular way–through the marking of her abled gaze.
In general, Oppenheim’s work questions the documentary nature of photography, as well as explore trans-digital modes of creation. To upend notions of “archives” and the inherent distance between subject and viewer, she has inserted vertical white lines into Hines’ photographs, alongside the curved spines of the photographic subjects. This is not about justice for disabled bodies; it is about using them as metaphors.
I am tired of abled people using my spine as a metaphor:
Disability art, by contrast to art about disability, makes a statement about our identities. No longer are we mere metaphors for abled people’s struggles. As Jennifer Eisenhauer writes:
The conceptual understanding of artists in the Disability Arts Movement marks a significant shift: from prior discourses of disability. Within the Disability Arts Movement a critical distinction is made between disabled people doing art and disability artists (Barnes & Mercer, 2001). The inclusion of disabled people doing art m art curriculum places an emphasis upon the representation of difference through a curriculum of admiration and appreciation in which individual artists are admired for their ability to create work similar to other able-bodied artists. In contrast, the discourse of the disability artist engages in a critical process of questioning the sociopolitical construction of disability and related ableist ideologies. Such work can include the expression of admiration and appreciation inherent to the construct of disabled people doing art while also introducing critical questions about the formation, maintenance, and possible disruption of ableist ideologies. (9)
The sensuality abled viewers of my Parallel Stress craved wiped out the fundamental issue presented in the piece: that my stress as a disabled body was due to the built environment. I was locating my disabilities outside of my body, outside of my spinal cord, into the world over which abled people have long designed for themselves at the exclusion of disabled bodies.
Abled viewers might enjoy work about disability, but they resist disability art.
Abtracting and sensualizing my work also erases the trauma associated with it: My skirt is printed with my oldest brother’s police booking photo because the traumas he inflicted on me cannot be separated from the traumas experienced through and because of my disabilities–and some of my disabilities (PTSD, anxiety) are a direct result of his abuse. This erasure of mental illness as a driver of my aesthetics is not unintentional, but rather, the entire point: “Traditionally,” writes Tobin Siebers (69), “we understand that art originates in genius, but genius is really at a minimum only the name for an intelligence large enough to plan and execute works of art—an intelligence that usually goes by the name of ‘intention.’ Defective or impaired intelligence cannot make art according to this rule. Mental disability represents an absolute rupture with the work of art. It marks the constitutive moment of abolition, according to Michel Foucault, that dissolves the essence of what art is.”
The color of my suitcase–a statement on the baggage of gender, as I am nonbinary: erased by the Prisma filter.
Every aspect of that piece, from the red wig made of plastics and therefore petrochemicals (representing my brother’s Pontiac GTO) to the way I held the cane -in the wrong hand, to create a balance challenge and to highlight my cane in the foreground as a kind of prosthetic backbone- was erased by the Prisma filter.
Realism was also essential to my piece because I was calling out the City of Lafayette for its ableist city planning. It worked. The protest worked. The city identified the location and paved that particular sidewalk:
Had I promoted it as a sensual Prisma filtered piece, they never could have identified it.
Likewise, people who worked in the mills and factories and experienced scoliosis, knock knees, and even loss of bone marrow from it do not describe that trauma in “sensual” terms. William Dodd, a self-proclaimed “factory cripple,” wrote of how the marrow of his bones dried up due to poor circulation from bone deformities. “The bones then decay, as in my arm; amputation is resorted to, or life lost.” This is a far cry from fetishistic voyeurism.
It’s not, of course, that disabled bodies aren’t sensual; it is simply not for abled people to define. When abled people do so, they tend to erase the realities of disability. Oppenheim seems to believe disabled bodies can only be humanized absent of their traumas.
Dodd also struggled to find a romantic partner and to integrate into society:
The pain, the internalized ableism, the rejection: Oppenheim does not know this element of the story.
That abled gaze, staring in horror of our bodies, inspires rebellion in disability art.
Many disabled artists challenge the abled gaze by “staring back.” Eisenhauer writes of artist Carrie Sandahl:
Performance artist Carrie Sandahl presents her body as a consumed and inscribed text in the art-life piece titled The Reciprocal Gaze (Sandahl, 1999, p. 25). In this performance, Sandahl walks outside while wearing a lab coat and white pants completely covered in red text as well as drawings of a spinal cord and hipbones (Thomson, 2005). As she encounters people’s stares, she hands them a piece of paper that details her medical history. The text on her clothing includes common comments and questions that she experiences in her everyday life, such as, Are you contagious? I bet the Easter Seals could help you. Do you ever dream that you’re normal? Along with these questions, she includes drawings of her scars drawn to size and in the exact location of the scars on her body. Adjacent to the scars, are the names of the doctors that performed the surgeries. As she describes it, “the doctors who that scar belong to” (Mitchell & Snyder, 1997). In her pelvic region, she includes the statement that she can have sex and bear children. In addition, throughout the collage of text and drawing, Sandahl includes references to psychoanalytic theory in regards to how we define ourselves through the Other. (13)
When my disabilities became visible, my first instinct was to design and print fabrics with my medical images. I call this one my Syringomyelia Skirt, and every time I get new images, I design and print more panels, expanding the skirt into something unwieldy. The process of seam ripping fabrics mimics surgery; sewing mimics stitches.
I did not yet know I fit into a tradition such as that of Carrie Sandahl, but once I learned of it, I realized the importance of this discourse, of refusing the abled gaze (Fig. 7).
I also became interested in imposing a “standard” backbone over mine — not to explore the sensuality of my scoliosis, but to “stare back” at the abled gaze, as in this image, which is not on its own a complete piece, but part of a performance (Fig. 8):
I use the background of my home and the cold blue light to suggest the condition of being “homebound,” which to the outside world equates to a kind of death. It mimics the eerie lighting of a morgue. Notice the backbone model, when placed upon my back, curves naturally along with it? This is defiance to models and straight lines such as Oppenheim draws over subjects.
And yet, my body is ambiguous here. It can be inferred that my disability has to do with my back or spinal cord, but you cannot see it. I hold the model backbone over mine in such a way that my arms arms are hidden; this was done to disguise the remote for the camera, as well as the metal handle for the backbone. It hadn’t occurred to me to see it as an image of amputation until someone on social media asked whether I Photoshopped my arms out on purpose.
The question intrigues me: Was my pose or how people saw my pose an unconscious internalization of all those famous sculptures with “amputated” (actually, lost to damage) limbs?
Tobin Siebers points to Magritte’s Venus as an example of the way disability renews art and becomes part of its beauty. For the original Venus de Milo, missing arms reflected damage over time; for Magritte, it was the defining characteristic and what made it beautiful (65). With blood painted on her stumps, Venus becomes a representation of disability (Fig. 9).
The statue is entitled “Les Menottes de Cuivre,” which translates to “The Copper Handcuffs.” The metal copper is ruled by Venus, so it makes sense, but “handcuffs” feels … strange here, given the missing hands. In a sense, Venus is here handcuffed to herself, to this representation. Or perhaps it’s a statement on her disability, her amputation. In any case, it isn’t own voices disability art, but it is a kind of disability poetics, albeit exploited for surrealist aims–perhaps to generate horror by answering the question ableds so often ask: “What happened?”
Own voices is key: abled people do not understand disabled bodies or disabled lives and the complex interrelationship between disabled bodies and work. Does Lisa Oppenheim know, for example, that it’s legal in the United States to pay disabled people less than the minimum wage in sheltered workshops? She never makes these connections in the exhibit, which seems rather to present these curved backs as nothing more than the lines and curves of the textile weaves they produced. It all seems far in the distant past, rather than a pressing issue today.
I could tell her stories about my own work history. Detasseling corn with bloody hands and dislocating joints in the muddy corn fields in 100-degree+ heat in Iowa summer at age 13; folding hot laundry in the basement of a hotel because they didn’t want an epileptic in the front area where someone might get scared by a seizure, and how that hot work caused more seizures and caused me joint problems from the long hours standing & stooping & lifting heavy loads with Ehlers Danlos Syndrome; how many jobs I have lost seeking accommodations for my non-standard body and needs; how I didn’t get to do my PHD in art because it wasn’t accessible.
As for me, when I rolled my rollator into the Lisa Oppenheim: Spine exhibit, I could not hold back tears. “I wish one of my disabled friends were here,” I told my husband. “I need someone here with me who understands, who can feel this exhibit in their backbone.”