Before I got my Ehlers Danlos Syndrome diagnosis, I thought my whole life would change once I saw the geneticist. I pictured a world where doctors believed me, where I had access to treatments & diagnostic testing, and where I would be validated. I pictured myself feeling better, doing more again.
In some ways, it came true. My diagnosis helped me get physical & occupational therapy, which led to my ring splints:
Even better: Suddenly, I “made sense” to my epileptologist. He had long been concerned it didn’t make sense to have epilepsy and Chiari and Syringomyelia. But EDS connected the dots. After a childhood of medical trauma inflicted by neurologists who refused to believe I could have mysteriously dislocating joints and tinnitus and paresthesia and migraines and bipolar and chronic pain and epilepsy (and trauma), I felt like I never had to fear a neurologist again.
Finally, I had what you might call a Unifying Theory of Karrie. I never felt explained before. I never made sense before. My whole world was going to open up.
I found an amazing new PCP (my previous one no longer took my insurance) after I read reviews from fellow zebras online. She tested me for Mast Cell Activation Disorder after discussing my symptoms, and sure enough, I had an explanation for my weird rashes and digestive symptoms. She sent me for referrals, prescribed medications, and I had hope.
But making sense only gets you so far in the United States healthcare system, and the letdown after that initial excitement is real and depressing and hard. Diagnosis is a privilege, to be sure, and I am not denying it. But diagnosis does not mean access. It does not mean belief, either, I am finding.
Insurance cut off my PT & OT after only a handful of visits, and I lost some of the progress I was making. I try to keep up with the exercises at home as much as I can, but I miss the zero-gravity treadmill and my PT’s gentle way of stimulating supporting muscles. I miss the hot wax treatments for hand pain at the OT.
When an angio CT found my ascending thoracic aortic aneurysm, my cardiologist refused to connect the dots to my EDS, even when I brought him research studies. “If it’s not vEDS,” he said, “There is no connection.” But I have no other cause for it: no clogging or hardening in my arteries, no other underlying heart disease. I go without annual imaging, necessary to track its expansion so we can intervene at the right time. “The right time” comes earlier with connective tissue disorder; my aorta is going to be weaker than someone without EDS. Insurance denies the cardiac MRI I need; they might approve it if my doctor would connect those dots.
As for vEDS, the geneticist wants me to come back to rule that out, too, because of the CT scan. It could very well be vEDS, and we don’t know it yet.
I am still fighting for most of my medications–almost all of them denied coverage because my diagnoses are “off label” uses or the meds are non-formulary since they aren’t common.
I have no pain management of any kind. Let that sink in: My joints dislocate regularly and I have a spinal cord condition with no pain management.
I am still being denied coverage for crucial testing, like an EMG to rule out neuropathy or perhaps an underlying condition like chronic inflammatory demyelinating polyneuropathy. My PCP says it’s urgent. My neurologist rolls his eyes. “You can’t have another thing.”
He doesn’t understand that EDS means I may well have many other things.
“EDS doesn’t protect you from other diseases,” I tell him. My gene mutation is not a shield, I think.
EMG denied. Rinse. Repeat.
I asked this same neurologist for an upright flexion-extension MRI, explaining to him the concept of cranial settling in EDS and how Chiari malformations like mine can herniate deeper in the upright position.
Finally, my PCP sent me for one, and what do you know? My Chiari is deeper when upright and I do have Craniocervical & Subaxial Instability. Insurance initially authorized it, then denied it. So now I’m on the hook for the bill.
I paid out of pocket for a long-distance neurosurgeon consult with a renowned CCI expert. He says I need Chiari decompression & fusion from C1-T1. Fusion would look like this:
I sent the neurosurgeon’s opinion to my other neurologists: They ignore it or downplay it. They don’t believe it is making me that sick to have my skull sinking and sliding, my brainstem compressed. Never mind my Karnofsky score is 40, meaning: I am losing my independence.
Theoretically, I could fly out to the neurosurgeon who wrote the opinion. In fact, he would be my first choice. But insurance would never pay for it, so I’d have to start a GoFundMe, and I will never be popular enough to raise that kind of cash. I am wearing the recommended neck brace for car trips and hoping for the best.
That’s the long and the short of it: I waited 43 years for validation, and I finally got it, and I can’t get most of my treatments or medications and can’t get even a simple test like an EMG — something you’d think makes sense with a spinal cord condition.
I don’t want to discourage anyone seeking diagnosis: It absolutely matters. However, I want others to know the truth of the post-diagnosis letdown, when reality sets in that proving you really are sick doesn’t mean the medical system cares about making you well.
I was fascinated by Hofmann’s Salamander Letter forgery in particular because even though it manufactured bogus “evidence” of Joseph Smith being a money-digging dabbler in magical arts, it was also true: Smith was a money digger. Smith did dabble in magic. “It is true,” Hofmann later confessed when caught, “that I wrote the documents according to how I felt the actual events took place … the idea there was more to keep it in harmony with what I thought potentially genuine, discoverable documents may say.”
I wanted to get inside Hofmann’s mind, so I learned his ink and his methods. But the first thing I wrote in his iron gall formula:
My answer: my brother’s confession for his crimes. So what came first: the forger or the ink?
I became obsessed with the idea of forgeries that are true–the idea that I could manufacture the missing artifacts & evidence of my life, including my secret siblings, the abuse I experienced, and my Mormon family connection.
But if there is such a thing as false testimony, and it feels like truth--just like truth–how does anyone ever know anything is true? If knowing is a feeling, and lies feel just like truth, then every feeling, every scrap of knowledge, is a potential forgery. What do you do? Accept the story that was written for you? Dismiss and deny any testimony that contradicts the narrative your ancestors, elders, and family have given you? Isn’t that exactly what abusers perpetrate on their victims: powerlessness to tell their own true story?
I believe this lifelong tension between truth, testimony, and evidence is what sparked my interest in Mark Hofmann’s forgeries. It is why I have learned to make my own ink. It is why I am translating my brother’s taped phone call into Deseret Alphabet, a phonetic alphabet invented by the Mormons in Utah, because I want to breathe life into his words again, to make him speak, even in death. It is why I am forging the plea agreement my brother should have made. Why I am forging birthday & greeting cards he should have sent me, letters he should have written. I am not trying to bamboozle anyone; on the contrary, in my book-in-progress I make it very clear what is forged and what is not. The point is not to trick people.
A few of those forgeries on vintage Valentine cards:
So many times, I have tried to tell the story of my forgeries and inks. They were central to the piece about my lie detector–to which I subjected myself because Mark Hofmann was subjected to one, too. I had this idea in mind that if I wanted to understand the master forger, I had to follow in his footsteps,: Everything Hofmann did, I would do, too. (Except, obviously, the bombings.)
I read books that he read. Visited places he frequented. Made his inks, practiced his methods. I even underwent hypnosis regularly for months, because Hofmann was an expert at self-hypnosis. I did it like him: hypnosis first, lie detector second. Everything had to be in the right order.
I learned to make papers and age them. I learned how to mess with Carbon-14 dating, too. I got good.
I forged my first greeting card from my brother on the day of my lie detector test, and I wrote:
“I miss the old ink polygraphs,” the polygraph examiner says, raking his fingers across the thin blue lines of his legal pad. “I loved to watch the needles move. I could touch the paper and get ink on my fingers.” He rubs together his left forefinger and thumb, leaning in close and whispering, “It was like I had been part of something.”
I wonder if he used this technique as a detective in the Salt Lake City Police: violating personal space, confessing a secret to make an adversarial process feel collusive.
“I get it,” I say, making fists to conceal the black stains on my cuticles and fingerprint ridges. Last night, I stirred tannic acid, green copperas, Roman vitriol, gum Arabic, logwood, and distilled water in a cast iron pot: an acrid, purple-black witch’s brew of iron gall ink. I got the recipe from Charles Hamilton’s Great Forgers and Famous Fakes, the same book that Salt Lake City police seized from Mormon document forger Mark Hofmann’s home in 1985 after he blew up two people with pipe bombs to cover up his forgery schemes. I read it because he read it.
As we speak, the mixture is fermenting inside a mason jar on the kitchen counter like a squid ink delicacy. This morning, I siphoned a little into a pipette and filled a vintage ink bottle. Then, I dipped in a steel nib pen and practiced my brother’s signature until I could draw the upper loop on his capital “G” without hesitating. Nothing betrays a forger faster than hesitation.
The piece was accepted for publication in 2014, but it was not to be. And so, this element of my story stayed bottled up.
For years, I worked from only one exemplar of my brother’s handwriting: his signature pleading not guilty to sexual abuse of a child under twelve: the same crime he perpetrated against me. I think it subconsciously influenced the greeting card concept: greeting cards require very little text; a signature carries most of the weight. It was also influenced by the Dead Sea Scrolls, but more on that later.
I started studying graphology — less for personality & character analysis than to sharpen my skills at graphical analysis of handwriting.
Even though my brother was born in Hawaii on the naval base where my father was stationed, he grew up in the same city I did: Cedar Rapids. He would have learned penmanship in the 60s; I learned it in the 80s. The Palmer Method taught writing as a whole-arm movement with the forearm resting lightly on the desk—no death grip on the pencil. Even now, I can hear my teacher coaxing me to relax my fingers.
“Hold the pencil up here,” she would say, peeling my fingers from just above the tip of the lead and repositioning them higher. “Let the movement come from the arm.”
But whenever I did, the loops of the letters spiraled out of control.
When the teacher wasn’t looking, I squeezed the pencil tight again. I still do it.
May 24, 1959 Cedar Rapids Gazette:
Greg was two years old when that article appeared.
How strange, my brother and I lived at the epicenter of Palmer penmanship education, and I—the forger—have to travel back in time to re-learn the system I resisted back then. I have to loosen my grip on my pen. I have to hold it like I am someone else.
At the end of a 1983 article, though, I see something that makes me doubt what I saw in the shape of Greg’s “G”:
By 1970, Greg would have been twelve, well past learning cursive. Did he really learn Palmer?
Then again, the January 1963 Gazette asks of its readers—all locals—the following:
I think it is safe to say my brother, too, learned Palmer.
Over time, writers shed the strictures of the penmanship system they first learned. It happens consciously and unconsciously. I remember forcing my signature to change. I remember thinking my original one so rote, so bland, so exposed.
Which is why I find it so odd how little my brother’s changed from the rote Palmer copybooks. No paraph after the s. No fancy loops.
But look closer, and you will find my brother dropping hints: no scythe-like curve inside the “G”; no curly-cue inside the top of the D. And yet, the tightness of it and the flow holds close to what he was taught, as if he never felt the need to make his signature match his sense of self at all, as if he knew who he was from the start. At least in his signature, my brother ran together letters. His r is a barely visible arrow flowing out of the curly-cue of his o. The n in “Higgins” looks almost like his i’s. I do that, too: write so fast that letters bleed one to the next. Just like him, my i-dots do not appear directly above the letters. In fact, I often do not dot my “i’s” at all. When I do, I stab the ballpoint on the paper, leaving pinpoints like an earring hole. His are dashes, like Morse code.
A graphologist might point to how his name floats, specter like, above the line, a symptom of moodiness or moral confusion.
Throckmorton, chief forensic document examiner on the Hofmann case, warned me about graphologists—“graphos,” as he calls them. It is, of course, pure pseudoscience. Still, I can’t help but feel a chill when I see “moral confusion” in the diagnosis of Greg’s signature—in investigatory terms, his modus operandi, his signature.
As for me, I detest paper with lines:
All of my favorite notebooks come filled with grid or dot patterns, like maps or architectural plans. Sometimes, my letters hog five rows; sometimes, they only occupy two or three. There is no way to tell if they sit on the line, because the baseline changes: the paper makes way for my words. Is that the temporal lobe epilepsy—my discontinuity of identity? Maybe I am forging the graphological implication that I want. Maybe I am shielding myself from analysis. Maybe I am morally confused, too.
Now, I have many more exemplars from his Army & VA records. They took years to acquire. Once, I got grilled by VA General Counsel about whether I could claim equal footing as “next of kin” to a half-sister I have never met. Her name appeared in Greg’s records; mine did not. I won. I still don’t know how I did it.
More exemplars should have made forgery easier, but instead, it opened up new questions and complexities. It made it harder.
Or how about this? My brother bubble-dotted his i’s when he was eighteen. Bubble dots!
Somewhere, in the space between his bubble-dotted Army enlistment signature and his signature pleading not guilty to sexual abuse, his letters got tighter, narrower, and started to float, like a ghost.
Here is my brother’s signature in his high school yearbook, obtained from the Prairie High librarian:
Here, finally: a flourish! That long tail on the s, like the Big Dipper. It marries g & s. Dips deep, deep down into what graphologists call the subconscious zone, the land of the erotic, sexual, dreams, collective symbols, the material … this is the land of desire. The signature is how you want to be seen, how you present yourself to the world, and here, he is libidinous and dreamy, with an innocent face in those bubble dots.
The combination of his g & s intrigues me: it feels like x + y: his mother and father. Given name vs. surname. Mother vs. Father. Higgins being our shared father’s name.
“Your brother was a woulda been coulda been muscle car Yahoo,” one of his old friends told me when I called him with questions about my brother. I try to square that image of him with the bubble dots, his infamous raw sexuality.
All the girls had crushes on him. A compilation of interviews with his high school girlfriends & women who had (and still have) crushes on him:
Funny how the muscle-car yahoo decorates his signature in the yearbook, while sticking close to the copybook Palmer letter forms. That’s his youth showing through: I am witnessing a moment of self-discovery here, my brother forming an identity by & through his signature.
I got jealous when I first saw those bubble dots. It looked like my sister’s handwriting, not mine. I never did bubbles like that, never traced such lovely loops. If handwriting were genealogy, he’d be more related to her. I had to forge to make us related.
Graphology might be bunk science — remember how the lead forensic document examiner in the Hofmann case warned me about graphos — but damn, sometimes it is true.
The more I made inks, though, the more it became an alchemical process: a way to transmute grief, process my progressive disabilities, and even practice magical medicine.
In ASTHMA ABRACADABRA, I channel all senses of the term, for my asthma medications, an immediate and simple solution to make me breathe, are made of petrochemicals as well, meaning they contribute to petroleum extraction and pollution, even as my illness was created by that pollution.
Doctors always want to pour gasoline down my throat. My body is a petroleum sink.
My inhalers are beneficent tailpipes.
Even the packaging uses petrochemicals, for the industrial inks used to print the medical pamphlets in each inhaler are made from petroleum feedstocks.
The inhalers themselves are plastic: made from petroleum.
In this performance, I recycle the paper from asthma inhaler patient information booklets into new paper, not bleaching out the ink: I want it to be part of the paper itself, like a secret palimpsest.
I size it with gelatin, a substance made from skin and bones. The scrolls are bodies. Bodies I have created. I create with the word.
I write a message on the first sheet in sympathetic ink, using gall nuts and a reagent to develop the message (the regent being copperas).
Hence, my alchemical approach to inks & a scroll where I take my spinal cord through ink-chemical permutations as I process it at various stages, as here:
Iron gall possesses what archivists call bite, meaning it sinks into paper like teeth. Ink’s root word, encaustic, means burn, and iron gall is a slow burn. From the moment you dip in a nib, oxidation begins, which is how the writer sees their words at all. Without a dye like logwood, iron gall is invisible at first, until the air blackens it. The corrosion on some documents is so complete, if you lift an old paper, letters fall out of the page like alphabet ash.
Every stroke of iron gall absorbs oxygen as it rusts, gaining the weight of the oxygen: words grow heavier as they age. They gain the weight of time. [time is a physical substance]
Every letter reenacts The Beginning, the perfect chemical signature, chemical blueprint, of our atmosphere … Two hundred millions years before the Great Oxygenation [Oxidation] Event that changed Earth’s atmosphere forever and made it habitable to human beings, cyanobacteria appeared and learned to photosynthesize. In went light, out went oxygen pollution.
The deepest and most serious of forgery+ink magick of all: an epigenetic magic spell that was the center of my 2015 PHD application. An excerpt:
In Rube Goldberg Machines, Mormon theologian Adam S. Miller wrote:
“The body, despite its motility, has no clean edges, no hard lines. Instead, it bleeds out beyond this fragile, porous shell of skin and hair into the fabric of the world around it, just as the world around it simultaneously bleeds back into the flesh, fiber, and blood of the body itself through respiration, digestion, and sensation. Disconnected from air, food, water, and sensation, a body is not a body. As a result, to successfully resurrect a body, one would have to successfully resurrect a world.”
To resurrect my brother’s body, I have to resurrect his world.
I had already started with forging my brother’s confession through birthday and Valentine cards, but his world needs his body.
I got a rose tattoo to reproduce my brother’s. I didn’t get it in memory of him. I got it to steal his memory. I wanted the memory of tattoo needles cutting into me in the shape of a rose.
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.
Epigenetic methylation is ink, too, blotting out genes. Genetic code as palimpsest. Forgery, too.
(For more about the tattoos, which I designed as my own Mutus Liber, an alchemical confession of sorts: here and here and here.)
But timelines get complicated. I wrote about the timeline in teeth, how it could undo me:
Yank a tooth out of a post-Bomb body, and you can calculate a corpse’s birth date within 1.5 years. Teeth stop forming at an early age, so they stop picking up carbon, and because they erupt through the gums in predictable patterns, the mouth is like a timeline of exposure to Carbon-14. But the method works best for people born after 1960. For people born in the 50s—like my brother—it gets trickier because their dentition was forming during a time of great flux in radiocarbon levels: up and down, up and down. Tooth 18, which erupts after Tooth 19 might wind up with a lower radiocarbon content, even though it’s younger.
When my brother licked the lingual side of his molars, he was licking a timeline out of joint.
In the report, “Measuring atomic-bomb derived C14 levels in human remains to determine Year of Birth and/or Year of Death” Gregory W.L. Wodgins writes that “blood, hair and nail radiocarbon levels lagged atmospheric levels by 0 to 3 years, consistent with a rapid replacement of these tissues”—which is why are calibrated to the air at time of death. “Bone lipid levels,” on the other hand, “lagged atmospheric levels by 6.8 years.”
But I was born after the bomb testing ended. My teeth should form a perfect timeline, which could expose my forgery. I am investigating ways around it, and I have requested my brother’s VA medical records, including dental radiographs and records, in the hopes of formulating a forgery plan.
And I have not yet obtained radiographs of my brother’s teeth. I do not know if his teeth had funky roots like mine.
Another solution is throwing off the carbon isotope ratios in my body to prevent a proper dating of my body:
Using petrochemical-based shampoos, which contaminate the hair matrix with carbon devoid of C-14 due to petrochemicals coming from fossil fuels. This throws off the radiocarbon balance in the tissues, particularly relative to fingernails.
Eating food grown in the heavily petroleum and coal-polluted air of Utah, which will alter the C-14 content in my cells (also sea food, which is low radiocarbon, but … I want it to be of the Utah air)
If I cannot press a roentgenizdat for my brother, I will make him another kind of record: his words written in bone.
I grind the carbon left behind by “The Strange Flowers” with bone black pigment, gum Arabic, and distilled water to make an ink.
At the last minute, I add honey, because of Ezekiel:
Then I looked, and I saw a hand stretched out to me. In it was a scroll, which he unrolled before me. On both sides of it were written words of lament and mourning and woe.
God commanded Ezekiel to eat the scroll, and he said the lamentations tasted “sweet as honey” in his mouth.
The blackness of bone black pigment belies its true nature: mostly tricalcium phosphate, a perfect laboratory medium for transfection, the deliberate infection of a cell with DNA to alter its sequence and sire a new cell line. I grate wisdom tooth dust into the rich black fluid and follow it with spit. My steel nib pierces the bone ink like an injection needle, infusing the DNA of my saliva and bone into my brother’s words as I translate the police phone call transcript into Deseret Alphabet.
I wanted the words of that ink to make him a Luz bone: the bone of resurrection, the seed from which God grows bodies at the Resurrection, End Times.
But resurrection has consequences.
I began to believe that my epigenetic forgery created my spinal cord condition. I made it happen. As I said in a 2017 interview with now-defunct ROAR:
The first time I saw the syrinx (hole) in my spinal cord, I thought, “I am too good at magic.” My whole process for years has been an epigenetic resurrection spell in an attempt to bring my oldest brother (who died in 2008) back to life. He had a spine like this. It was why he took so many pain medications.
I mean, the holes in my spinal cord are caused by a neural tube birth defect called Chiari Malformation that makes my skull too small for my brain. My cerebellum is falling through the foramen magnum and cut- ting off the ow of cerebrospinaluid. CSF pools in my spinal cord and erodes it. BUT my Chiari wasn’t diagnosed until I was 39 and very sick from the air pollution in Salt Lake City. I went in for a routine brain MRI for my epilepsy, and my neurologist said, “Has anyone ever told you that you have a brain deformity?” I’ve been getting brain scans since the late 80s! Nobody ever found my birth defect. My syrinx wasn’t found until two years later during a c-spine MRI.
When I told doctors at the NIH, where I am participating in a study, they said, “I would love to get my hands on your childhood MRIs.” Me, too.
Did you know that a fetus initiates parturition by secreting surfactant protein-A and platelet activating factor from its lungs? It kicks off an in inflammatory process, and labor begins. This inflammatory process resembles my asthma in the SLC pollution, the chemistry of which inspired a lot of my magic. I sometimes think I gave birth to my own birth defects—that I was going through some kind of rebirth there in SLC, initiated by my own lungs. And I did it in my brother’s image.
My brother’s spine got crushed in a factory accident. He was making the machines that harvest corn to make ethanol. I am facing ethanol injections in my L1 vertebra for a tumor (separate from my syringomyelia) that will eventually cause a compression fracture.
It’s the most radical of radical empathy. I know it sounds weird, but I’m proud of it.
Since then, it has gone so much further, as I was recently diagnosed with craniocervical instability as a consequence of my Ehlers Danlos Syndrome, requiring fusion of my c-spine, possibly to T1: titanium in my spine, just like my brother. What came first: the inks or the genes?
Meanwhile, my conditions progressed, and my hands lost more strength and coordination. I started to experience more eye tracking problems, worse fatigue, and more.
My fingers, always hypermobile due to Ehlers Danlos Syndrome, hurt more while feeling less. One syrinx in my spinal cord affects nerve pathways that innervate the thenar eminence, and a result, it is wasting: I cannot grip like I used to. I have lost some blunt touch sensation, as well as all protective sensation in most of my fingers & hands. I don’t feel cuts or burns, even as my neuropathic pain rages hot like fire. It’s one of the strange contradictions of syringomyelia.
My handwriting changed. My signature changed. I shared it in a graphology group to talk about the changes, and fellow budding graphologists declared it an illegitimate signature.
They mean because of the scoring: crossing out — obliterating — my own name with the line through my H. It’s the graphological equivalent to suicide.
But when you are ataxic, you might not have good control over lines and loops and spacing. You move through the space of the paper like you move through actual space: disordered. That is what ataxia means.
And anyway, I am also bipolar. So if my handwriting cannot reflect my mental illness and still be legitimate, then what is graphological “illegitimacy” except ableist?
Still, it’s a reality: this book is hard for anyone to do, but even harder for me.
I have had to adapt my entire process:
When I make inks, I can no longer grind pigments with a mortar & pestle over the course of many days. Now, I use a dedicated pitcher for my blender. My occupational therapist gave me foam wraps for my pens, so I can control them better, without a death vice: I still find it so hard to control them. I use a light box so I can see better what I am doing, but it gives me migraines. My lines are never not wobbly, my pen pressure never not uneven. When I need to use fire — and I use fire a lot — I call on my husband for help.
I know these adaptations & “flaws” will leave their traces in my forged writing, inks & papers, but I like the idea of it: I long ago committed to my forgeries being honest. In each and every one, I drop hints: My dip pen hygiene is terrible on purpose, building up layers of ink like strata, all different carbon dates; each batch carries different oxygen isotopes in the water, too. I am dropping little hints in the chemistry. My Valentine’s cards are not of the correct era: too vintage, too old. And on & on … I never wanted to bamboozle anyone. I wanted the process of manufacturing my own evidence, my own artifacts — the ones that should have existed — to be the thing.
I love how my disabilities — some long associated with dishonesty and lies because of ableist stereotypes — got me there. The very things that made the graphologists call my writing illegitimate.
Graphologists teach that the paper represents literal space & handwriting a graphic tracing of a person’s movement through it: Your fingers are the needles of a lie detector or EEG, tracing hidden truths against your will. If that is so, then my ataxic body, dissociated from its senses, should leave an honest trace of itself, too. In this way, my forgeries & inks are not just manufactured evidence, but actual evidence. They are a disability poetics. By & through the ink, I gain a testimony that my writing is legitimate.
Currently, I am working on an Intermedia piece that brings together my inks, magick, alchemy, genealogical discoveries, and Mormon theological underpinnings. For this piece, I am writing my family’s medical history using individualized inks — for person, era, conditions — onto squares of Medieval parchment, aka, the kind made from animal skins and sewing it into a garment. I started it a few years ago, but it takes a long time to acquire the needed parchment due to cost — just like it took a long time to gather the family history.
It’s hard to know where the book ends. The story could keep going deeper indefinitely, but I see an ending in sight now, and it’s something I made happen through my inks, too. I am closing in on it: something that was meant to happen all along. And I can’t wait to share it.
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.”