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.
Just got an art history paper of mine up on the site, here.
Five days before the World Trade Center collapsed on September 11, 2001, the Nicole Klagsbrun Gallery in New York City premiered The Apartments, a series of digitally altered photographs in which artist Nancy Davenport simulates terrorist attacks on white-brick-wonders not unlike the modernist façades of the Twin Towers. With titles such as Terrorist 2, Sniper, and Revolutionary (day), revolutionary fighters wave red flags like occupying armies, snipers aim rifles from balconies, and missiles bank toward bland apartment blocks. The series appropriates photojournalism images from the 1970 Kent State shootings, the 1982 Siege of Beirut, and the 1972 Munich Olympics Massacre, as well as iconic performance art, positioning The Apartments in a liminal space between photojournalism and performance.
Were it not for September 11th, The Apartments might have succeeded as a show about misplaced political idealism, “failed modernism” (Yenelouis), and the problem “of photography as an objective medium to capture reality” (Davenport, “The Apartments”). Some of Davenport’s images might even appear comical in the absurd futility and clichéd gestures of her “revolutionaries.”
Read the rest in link at top! Unfortunately, it’s missing my footnotes, but maybe that’s for the better.
Some further thoughts:
Despite being tough on Davenport in that paper, I am a huge fan. My Parallel Stress series is, in part, a response to her re-enactment of Oppenheim’s iconic work (referenced in the paper), through digital manipulation as opposed to physically rigorous performance. I was intrigued by the concept as “accommodation,” and yet, I knew to make the points I needed to, I could never make my images that way. In a way, Davenport’s Parallel Stress neutralizes the bodies because they are not really performing physically, and I took a leap from there.
But I was also influenced by Davenport’s Weekend Campus, for a piece I am doing that creates a reverse animation of my brother’s crime scene photos. As I wrote in my PHD statement of purpose:
“In a similar vein, I have been thinking about Barthes’ “horror of the anterior future” as applied to crime scene photography when the photographic subject is a dead body. I am collaborating to create a backwards animation of the photos from my brother’s crime scene, inspired in part by the work of Nancy Davenport in Weekend Campus.”
The thing about Barthes’ “horror of the anterior future” is that it requires a photo of a then-living person who is now dead. As Barthes wrote: “He is dead and he is going to die…”
It’s a paradox.
But what is the horror of the anterior future when the subject of the photograph is a dead body? Because I experienced that horror with the crime scene photos of my brother, and he was dead. It comes down to modes of storytelling in forensics, the way investigation works backwards from death to life, a reverse process of decay. There is no anterior future because it, too, has come to pass in the photo, and yet, we have to figure out what happened. We have to discover and witness it. In a way, until that is done, it hasn’t come to pass. We have to be complicit in the death, in a sense, creating our own anterior future–and our own horror of it.
So I’ve been at work on a series of photographs that walk through the various versions of my brother’s death, backwards, in a choppy sort of animation, inspired in part by Nancy Davenport’s “Weekend Campus,” in which she uses a rudimentary animation of “panning” as if in film. It’s her homage “to the great French filmmaker Jean-Luc Godard’s 1967 film Weekend, which is famous for an eight-minute continuous tracking shot in which Godard catalogues all the dominant types of persons who made up French society of the time.”
Mine is not relying on panning and not a tracking shot; I’m interested in the concept of time in forensic storytelling — and as such, it’s more about animating actions with so many “missing” sequences. Investigators and survivors create “movies” from these janky, jumpy, glitchy sequences, making a story from disconnected and singular images. Even the investigation of the crime scene is disjointed, out of sequence, no concept of a starting or ending point …
Part of this project involved re-creating the Google Maps image of the apartment house where my brother died:
… while erasing the reason Greta “is not playing.” Greta is autistic, and she is literally not playing — not playing at looking like a neurotypical. In the autistic community, we call it masking: pretending to understand neurotypical behaviors, hiding our stims, suppressing our special interests, doing anything to not look autistic.
Greta is “not playing” because she’s not masking.
It‘s strange to witness neurotypicals calling it feminist and empowering for an autistic girl to refuse to mask, when so often in real life they shun neurodivergent people for being ourselves — forcing us to mask to fit in.
They label us too angry. They call us blunt. They disinvite us to events and refuse to grant us stage time because we are unpleasant. They call our facial expressions weird and our voices flat. They think we are robotic, unemotional, lacking in empathy. They call us obsessive. They call us exaggerators and confabulators and liars.
Which, if you’re paying attention, are pretty much the same ableist attacks right-wing commentators have leveled against Greta Thunberg.
I get these responses to my social media use in general, too: Why don’t you smile more in pictures? Why do you have to talk about x, y, z? You sound angry (when I’m not) or You’re too weird (OK that one might be true). On & on …
Now I watch as the same people (primarily women, primarily self-identified as feminist) from the lit community who said I could’ve delivered my message in a “more pleasant” tone are thrilled by the brand of activism that Greta brings because it angers men …
… while erasing her neurodivergence to make her more palatable to them.
Never mind autistic people are in greater danger of sexual abuse and violence. Then, when we report that violence, neurotypicals come at us again with the “confabulator” and “exaggerator” labels, so celebrating Greta for “angering men” is not exactly the best take.
It reminds me of what happened behind the scenes with AWP: certain neurotypical activists would egg me on in emails or private messages, celebrating how I refused to package my message “nicely.” Really, I just wasn’t going to lie. One time, in a Facebook discussion thread, a fellow activist said, “I would pay money to get Karrie on the phone with [former director] Christian Teresi.”
As soon as I needed backup, though, POOF. They disappeared and left me to the anger of abled writers & conference organizers. I noticed for all their praise, they stopped inviting me to be on panels. I realized they were, in fact, using me for my neurodivergent traits. So I stopped doing it.
And now — on a much larger scale — I see people doing this to Greta. They want her outspokenness and unsmiling face, but they are too busy erasing her neurodivergence to protect her from the ableist onslaught she is experiencing. Who will be her backup?
I ask you to reflect on this question: If you love Greta so much, what love have you shown autistic activists in your “real life?”
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.
In a recent profile in The Cut, Lena Dunham characterized her mixed connective tissue order as making her “flexible” and “the reason she is good at sex.” (She has also mentioned Ehlers Danlos Syndrome previously, though not in The Cut profile. People can have both.)
There are so many problems here it is hard to begin.
First, hypermobility and flexibility are not the same thing, and conflating them harms people with CTD diagnoses and those in diagnostic limbo. It might seem like splitting hairs, but in reality, it can delay diagnosis for years or decades. Hypermobility means joints move easily beyond normal range of motion, often leading to partial dislocations called subluxations, or full dislocations, when the joints must be reduced back into place. Not all people with CTDs experience dislocations, but many do.
As hypermobility goes up, flexibility can often go down. As is the case for me, muscles can tighten while attempting to stabilize hypermobile joints. Many with EDS, including myself, have extremely tight hamstrings, even in childhood, as the hamstrings try to protect the hypermobile spine and joints. Can EDS patients be extremely flexible? Absolutely. But, flexibility is not what doctors should be assessing when EDS is up for diagnostic consideration.
An example of hypermobility:
Notice that doesn’t look like “flexibility.” In fact, I am stiff!
In my case, my muscles stiffened up so much over the years that I didn’t realize my subluxations and dislocations even were hypermobility. I thought you had to twist into a pretzel like performers in Cirque de Solei to get a diagnosis. In fact, during my first visit at NIH for a Chiari-Syringomyelia study (a known comorbidity to EDS), I was asked, point-blank, “Are you hypermobile?”
I did not yet fully understand what it meant. I started to tell them about some of my joints (with documented dislocations going back to birth all through childhood & still today), but I feared they would “make me show them how bendy I was” and since I “wasn’t flexible,” they would laugh at me. It added another two years to my diagnostic wait!
It turns out I score 6 on Beighton (the test used to score hypermobility) now, but a 9 if you had tested me years ago. Some of that change is aging; some is stiffening from syringomyelia and muscle tightness to hold my joints together.
Some folks with CTD are super flexible; some are tight. It is different from hypermobility and not part of the criteria. And yet, many doctors think I am flexible and are surprised how stiff I am. It makes them question my diagnosis, even though an expert geneticist at a dedicated connective tissue clinic gave it to me.
And by the way, connective tissue disorders mean a lot more than hypermobility. For me, it has caused craniocervical instability which will eventually require surgery fusing my cervical spine; an aortic aneurysm and congenital heart abnormalities, including an atrial septal defect; severe pain; loss of function of many joints after so many dislocations; Chiari-Syringomyelia; my deafness that requires hearing aids (hypermobility affects joints in the ears, too!); mast cell activation disorder; unrelenting fatigue; migraines & other headaches, facial pain, TMJ, urinary tract issues; severe digestion problems; eye problems; a lifetime of painful dental issues + a high, arched palate … and the list goes on.
Connective tissue affects every system in the body, so boiling it down to “I’m flexible” erases the real experience of a CTD.
So that is one thing.
The fetishization is far worse. Many of us with hypermobility have dealt with leering & inappropriate comments from medical professionals, strangers on social media, and even intimate partners–as well as abuse that is both because of our hypermobility and covered up by it.
Lena Dunham seems unaware of the harm she perpetuates with her “makes me good at sex” comment. Perhaps it is her privilege in having access to the best doctors, the best care, and even a huge platform. Most of us do not live like that. Perhaps she really believes it makes her good at sex. I don’t know. For me, it causes pain with intimacy: I can dislocate & sublux in my sleep, let alone during sex. I am not alone.
When I was a child, my doctors knew I was being abused. My father was under active investigation, which is documented in my medical records, meaning: doctors definitely knew. They diagnosed me with PTSD and were highly suspicious of sexual abuse. My parents would shift from refusing to believe my diagnoses–calling them “psychosomatic”–to using them to cover up injuries.
Meanwhile, I caught on at a young age to medical appointments being forensic investigations in disguise. If I talked about the abuse, I had no shot at epilepsy care. To neurologists, if you have abuse trauma, your seizures must be psychosomatic. Never mind that epileptic & disabled children face much higher rates of abuse. It can be both.
I knew if I talked too much about my pain, I also could be denied my epilepsy meds, as the doctors had long since decided I couldn’t have epilepsy and dislocating joints and pain, etc. (Now we know they are all, in fact, connected.)
If I didn’t talk about the pain, I wouldn’t get care for it, but I might have a shot at keeping my epilepsy meds. But then: no care for the pain!
Sometimes, even I wasn’t sure which injuries & pain were abuse and which were my disabilities.
The problem? Dr. Holick never (or rarely) examines the children in person; hypermobility is common in children so diagnosis of EDS usually isn’t made until later; and his theory about bone fractures does not fit well with EDS. While it is absolutely true that childhood EDS injuries could be mistaken for abuse, Dr. Holick seeks & finds EDS in almost every case, with no examination. He also seems to forget, again, that disabled children face higher rates of abuse. It can be both–and often is.
Many disabilities are fetishized and have been throughout history. There is even a word for an able-bodied person who fetishizes disabled bodies: a “devotee.” When I read Lena’s comments, I wondered: Had she ever even cracked open a disability studies text, or read disabled voices who are talking about these issues? She barges in with her huge platform, becoming “the face” of these illnesses, without (it seems) taking time to respect disabled activists, artists, and writers who have been doing the work for disability justice.
For BIPOC people with CTDs, the fetishization and conflation with flexibility can inflict even longer diagnostic delays due to medical racism, as well as greater danger of abuse & assault.
Lena Dunham might have been joking, and there is certainly nothing wrong with using humor to cope with illness, but some jokes are harmful and have real & lasting consequences. I hope she will use her platform more responsibility in the future, but I don’t have much hope.
My first summer in Zion, the Mormons deliver a latter-day miracle.
A grasshopper plague is encroaching on a town somewhere out there in the vast Utah emptiness, on the other side of the Great Salt Lake: two thousand grasshopper eggs to the square foot, little exoskeletons bursting into being from thin air, like popcorn kernels on a hot burner.
Local news Channel 4 bears witness: Every ten years, the grasshoppers come. Like clock work.
As an outsider, a Gentile, I have made this reporter my hierophant. The Mormons have their Prophet, Seer, and Revelator, and I have a newsman. I never watched local news before moving here.
The plague is supposed to happen.
Backyards are popcorn machines, pop, pop, pop.
Insecticide has failed us.
The seagulls — the same birds that saved Mormon pioneers from the grasshopper plague of 1848 — have forsaken us. But not all of us. One lone believer prayed for a miracle, and seagulls swooped in to devour the pestilence. “It was my faith,” she says. “The seagulls came because of my LDS faith.”
LIVE FROM GRANTSVILLE, UTAH: God has not forsaken us in these latter days. We are still his people, the peculiar people.
But what if the miracle is the other way around? What if the miracle is the grasshoppers?
“I want hard times,” Brigham Young proclaimed, “so that every person that does not wish to stay, for the sake of his religion, will leave.”
The plague is supposed to happen.
Zion is not a city. It is a terrestrial docking station for the heavenly Zion when it descends at End of Times. I used to imagine it hovering like the mother ship in Close Encounters of the Third Kind, a glittering, saucer-shaped metropolis in the clouds, skyscrapers sprouting out the top, twinkling lights arranged around a center iris. When Zion appeared, the golden Angel Moroni statue atop the Salt Lake Temple would come to life, blow his trumpet, and herald the apocalypse. The temple spires would light like a runway control tower, signaling to God: This is the place.
I committed the classic Gentile mistake: ascribing too much power to God and not enough to humanity. Zion does not wait passively like a lightning rod. It is not a candle in the window for Heavenly Father. It is a writ of extraordinary relief, a direct appeal to the highest authority: Appear in our jurisdiction. Heavenly Zion “can come only to a place that is completely ready for it,” Mormon scholar Hugh Nibley writes in Approaching Zion. “When Zion descends to earth, it must be met by a Zion that is already here.” The world does not end because we are bad; it ends because we are good.
Latter-day in the Church of Jesus-Christ of Latter-day Saints means last days. Mormons must concentrate at all times on the end, as Zion does. It is why they stockpile macaroni and cheese, Cheerios, powdered butter and milk, soup, water, toothpaste, candy, shampoo, deodorant, gasoline, generators, flashlights, batteries, and bullets. Their minds and hearts must be microcosms of the City of God.
Like attracts like.
One Mormon becomes an object of fascination on CNN when he shows off his underground bunker blasted into a mountain slope, stocked with canned food, firearms, and gold for the apocalypse — not because he fears it, but because he wants it. He does not pray, “Spare us.” He prays, “Give me advance notice.” He is leaning air stairs against the stars.
Since moving to Salt Lake City, my husband and I have started our own stockpile in a spare room: twenty-five pound buckets of oats, butane canisters, a portable stove, gallons of water, batteries, flashlights. We started it because the city is overdue for a catastrophic quake along the Wasatch Fault, and when the fault ruptures, the east benches will drop off the mountains, tilting the valley floor like a pitcher, pouring out the Great Salt Lake.
“Americans hate the Mormons,” I say to my husband after a news segment about the fault. When we first arrived here, Facebook friends regularly posted polygamy jokes on my wall. One called the Angel Moroni the Angel MORON-i. “Nobody will save us.”
Not long after that, my husband purchases an AR-15 and locks it in a gun safe. In a backroom closet, he stacks ammo boxes like bricks.
Can a city, by its very design, make you long for the apocalypse?
The Mormons have a saying: As long as you can see the temple, you are never lost. They mean this literally. On Salt Lake Temple, the Big Dipper carved into the west tower is in perfect alignment under Polaris, the North Star. As Polaris sits at the center of the clock dial of the stars, the temple sits at the center of Zion. The temple is meridian zero: the point from which all streets radiate, a spiritual and navigational compass. Almost every downtown address expresses latitude and longitude in relation to it: 200 S 500 E translates to two blocks south and five blocks east of the temple.
As long as you live in Zion, you know how far you have strayed from Heavenly Father — and how to get back to him. In this sense, as Nibley describes in the Meaning of the Temple, the temple is the “knot that ties heaven to earth, the knot that ties all horizontal distance together, and all up and down, the meeting point of the heavens and the earth.”
In the temple, man climbs back to the presence of God through the endowment: washing and anointing; a ritual drama of the creation and the garden of Eden; learning the signs, keys, and tokens to reach Heavenly Father in the afterlife, and finally, passing through a veil into the Celestial Room, symbolizing the presence of God. It is the fall of Adam in reverse. It is atonement.
“Notice what atonement means,” writes Nibley: “reversal of the degradative process, a returning to its former state, being integrated or united again — ‘at one.’ What results when particles break down? They separate. Decay is always from heavier to lighter particles. But ‘atonement’ brings particles back together again. Bringing anything back to its original state is at-one-ment.”
Atonement is the opposite of entropy, the opposite of the natural order of things, the Second Law of Thermodynamics, which dictates that things fall apart.
The temple, then, is an anti-entropy machine.
This is also why Joseph Smith — he would say God — designed Zion to be so compact and dense: one square mile, a maximum of twenty thousand residents; ten-acre blocks with twenty half-acre lots each; eight people per lot. “When the square is thus laid off and supplied,” he declared, “lay off another in the same way, and so fill up the world in the last days” — a divine urban-growth boundary. He knew if Mormons strayed off the plat, they would wander off God’s map and onto man’s. Zion would dissolve. The center could not hold.
In Salt Lake City, vandals mount insurrections on the crosswalk poles:
Crosswalks are Zion’s Achilles’ heel, the intersection of what was and what is. When Brigham Young designed the streets 132 feet wide so oxen team drivers could turn around “without resorting to profanity,” he did not know he had exposed Zion to a fatal flaw: “wide, wide forever wide streets,” as Norman Mailer described them, ready-made for cars. The automobile was the anti-temple, a force of entropy destabilizing Zion’s crystalline structure. Zion dissolved, sprawling across the valley. The center could not hold. The population of Salt Lake City today: 189,314. Population of the metro area: 1,126,982. How many of those people can see the temple — actually see it?
“Even the smallest impurity or flaw in anything designed to continue forever would, in the course of an infinite stretching of time, become a thing of infinite mischief,” warns Nibley in What is Zion? And yet, Joseph Smith received the designed of the Zion Plat by divine revelation, and Brigham young was his spiritual heir — a Prophet, Seer, and Revelator, too. How could God telegraph to his chosen people a blueprint tainted with a fatal flaw?
I am, of course, committing my classic Gentile mistake once again: ascribing too much power to God and not enough to humanity. Zion can only come to a place completely ready for it. The streets had free will paved right into them from the start: You can U-turn. You can turn away. People chose cars, not God’s blueprint. Today, Salt Lake City is so car-obsessed that pedestrians risk life and limb to cross downtown streets. The city resorted to installing cups containing hazard flags on the crosswalk poles. Signs implore, “Take one for added visibility.” I refuse to submit to that lie.
At first, when JⒶWⒶLK appears on poles in my neighborhood, the graffiti seems like a force of entropy, too. If God were real, the vandal writes, tipping his hand: He is a nonbeliever, inciting pedestrians to revolt. And yet even he longs for the original Zion, the one designed for God’s people — emphasis on people — not cars.
Maybe, just maybe, the blueprint contains no flaw at all. Maybe this was supposed to happen. “One does not weep for paradise, a place of consummate joy,” writes Nibley, “but only for our memory of paradise.”
How can you atone without falling apart?
We are not canaries in the coalmine. Stop driving for the fucking air! — gas station graffiti
In winter, Zion becomes the bottle city of Kandor: entombed inside a fortress of solitude, breathing its own private atmosphere. The same mountains that insulated pioneer Mormons from persecution in 1847 turn traitor, trapping cold, stagnant air in the valley. Warmer air floats over their peaks, sealing the city inside an invisible bell jar. Meteorologists call the phenomenon an inversion because it flips the natural order: cold air near the ground and warm air high above. Heaven and earth trade places.
Here in the Bottle City, soot and particulates from power plants, automobiles, oil refineries, incinerators, and wood-burning stoves build up like exhaust in a locked garage, thickening into smog so dense it leaves a film on my teeth and hair, so caustic it sears my tonsils and throat. It tastes like a dirty penny. It gloms on to my vocal cords, corroding them until I sound like an old menthol smoker. Sometimes I cannot speak at all. My nostrils burn. My snot thickens into acidic goo.
Under the bell jar, the city is airless, windless, a kind of vacuum. Sound ceases. Winter birds hop along tree branches, beaks opening and closing, but I hear no song. Children scream and giggle, but the sound reaches me as though I am underwater. Barking dogs sometimes break through, but as in a dubbed film, their muzzle movements do not synch with the sounds. You would think smog could carry sound, that all those heavy metals would transmit it as clear as a telephone wire, but it does not.
The Utah Division of Air Quality calls the particulates PM2.5, meaning 2.5 micrometers in width, roughly 1/30th the width of a human hair, tiny enough to penetrate into the deepest lung tissue. Most of them are secondary aerosols: NOx from automobile combustion reacting with ammonia and other volatile organic compounds. NOx stands for nitrogen oxides: x as in algebra. Add to these molecules the intense UV radiation at Zion’s elevation of 4,300 feet, and a photochemical process gets sparked that cannot be stopped. The process is mathematical, predictable, exquisitely ordered: intelligent design. Even air-quality scientists call the chemicals species, as though they are living things, with volition and will and minds. When I walk through the smog, I am not just walking through toxic air; I am walking into a cloud computer, a sentient force.
NOx is unstable, as are all volatile organic compounds. Unstable atoms seek stability, order, an end to entropy: this is why they pair up, marry, give birth to new particulates. A microcosmic Bing Bang is happening right before our eyes. The smog is primordial soup, the stuff of new life: an inversion of the normal order of things, an insurrection against the Second Law of Thermodynamics.
Meteorologists blame the earth for the air: the strange topography of Zion, the mountains in all cardinal directions. Locals blame the air for the air. They call it bad air, as though it perpetrates evil. Never pollution, only bad air. “If it was the cars,” they say, “the air would be like this all the time, but it only happens in winter.”
They are wrong. In summer, we are a bottle city, too. Air stagnates then as it does in winter, except somehow Zion stays sealed inside with no lid to hold it. The sun beams down as omnipotent as a nuke, breaking apart molecules, accelerating reactions between NOx and volatile organic compounds to generate ozone.
Even with no temperature inversion, we are still breathing inverted air: stratosphere becomes troposphere. The same ozone that saves us from radiation high above kills us down below, rapid-aging our lungs. We cannot breathe the same air as God. And once the cycle begins, it perpetuates until molecules have no more atoms to give, ticking down like a doomsday clock.
They can blame the mountains and the air. I blame the temple.
The temple is yanking heaven down to earth by its knot, pulling it into the bottle like a model ship. The anti-entropy factory is working. It is holding air together on earth as it is in heaven. Unstable atoms fall apart; atonement brings them back together again.
I breathe the inversion in; I breathe it out — and just by entering my lungs, the air has changed composition once again. Simply by breathing, I am complicit in the cloud computer. I am co-creator of the intelligent design. I am quickening the apocalypse.
I am atoning.
January 2013: The Mother of All Inversions descends, choking off the Bottle City from fresh air for weeks. NBC News with Brian Williams finally picks up the story — the first national outlet to cover it.
On Facebook, my fears come true:
We will die here, I think. Superman is not coming. Americans hate the Mormons.
Then I catch myself thinking, Good. We are still the peculiar people. The chosen people.
When I first moved to Utah, I mistook the Bingham Canyon Mine for a volcanic crater. Later, I thought it might be a desert plateau because the rust-colored marbling around the crater walls reminded me of the painted hills in the eastern Oregon desert. Then I thought it was a rock quarry. Then a meteor impact site. Then a nuclear crater from the days of atomic blasts in the American West, even though I know the mushroom clouds bloomed over Nevada, not Utah, where Downwinders breathed the radioactive clouds that blew across state lines. When I learned it was the world’s largest open-pit copper mine, I refused to believe it. Nobody digs a mine pit in plain sight of a major metropolitan area.
Nobody, that is, except the enemy. On October 26, 1862, Colonel Connor planted the Fort Douglas flag on a hill overlooking Salt Lake City, signaling the United State government’s resolve to end the “Mormon problem” once and for all. To the feds — already embroiled in the Civil War — securing the provisional State of Deseret represented not only a strategic maneuver, but also a slap across Brigham Young’s face. To them — with his fifty wives and Danite henchmen slitting apostate throats in the dark — Brigham Young may as well have been the devil. Colonel Connor knew the self-proclaimed peculiar people could not survive the encroachment of Babylon, so he hatched a plot to lure Gentiles to Deseret. “You strike gold,” said Fort Douglas Military Museum Director Robert Voyles in the Salt Lake Tribune, describing Connor’s thinking, “how fast can you get gentiles?”
And even though Utah never spawned a California-scale gold rush, it did yield copper and silver — enough to make some Gentiles rich — as well as coal and uranium. Now 8,000 to 11,000 abandoned mines and 17,000 unguarded tunnels haunt this landscape. Since 1983, ten people have died falling into shafts, and twenty-six more have been injured. Stay out and stay alive, the Utah Bureau of Land Management admonishes, and though I know it is a public safety campaign, I get the sense something lurks beneath that warning, a double entendre.
Perhaps this is why mining particulates are called fugitive dust.
But here is the thing: Brigham Young not only let the mine happen; he helped it happen. He lobbied for the Transcontinental Railroad to meet at the Golden Spike. The railroad would bring Mormons into Zion, but it would bring Gentiles, too, and Gentiles would not defend Zion’s crystalline structure. Gentiles would be a force of entropy. He had to know the railroad would also speed trade, which of course included the mines. “If we were to go to San Francisco and dig up chunks of gold or find it here in the valley it would ruin us,” he said. He knew.
In 1974, Kennecott constructed the Garfield smelter tower 1, 215 feet tall, equivalent to three LDS World Headquarters office buildings stacked one atop the other: a modern-day Babel.
For 84 days, cement trucks worked around the clock, echoes of ox teams hauling granite from Little Cottonwood Canyon to build the Salt Lake Temple. To this day, the Garfield smelter remains the tallest man-made structure in Utah, designed to reach high enough in the sky to spit out pollution where it can blow away on the wind and meet the standards of the Clean Air Act. It is taller than the Las Vegas Stratosphere. Taller than the Seattle Space Needle.
With new efficiencies and cleaner emissions, the smelter no longer needs to stretch so high into the sky, but Kennecott has no plans to tear it down. It has become a kind of beacon for boaters on the Great Salt Lake and drivers on Interstate 80.
As long as you can see the smelter tower, you are never lost.
From a perch on the second story of a downtown parking lot, I can make out the walls of the Bingham Canyon crater, not the massive open pit where Kennecott shovels 450,000 short tons of earth every day. I squint, trying to make out the 320-ton capacity Komatsu trucks. With tires 12 ½ feet tall and bodies 29 feet wide and 51 feet long, they ought to be visible here, 27 miles to the northeast, like little remote-control trucks in a sandbox.
I can blame Brigham Young, but my people — the Gentiles — absconded with the land. What is the atonement for that?
Fugitive dust penetrates the deepest pockets of the lungs, lodging forever in the alveoli. I breathe in the mine dust, and within my wet flesh it becomes mud, which I exhale as water. It evaporates in the Zion sun and returns to the air. I transmute it. But I can never breathe it all the way out. It is part of me now. I am the fugitive dust. The fugitive dust is me.
After we shake hands, Bowen, Air Monitoring Manager at the Hawthorne Station, steps back as I photograph the two research sheds. I am surprised by how primitive they look, like meat lockers air-dropped in a snow bank. Were it not for the Hawthorne School playground just a few feet to the west, I might mistake the bare-bones setup for an Arctic research station.
The Division of Air Quality chose this location because of the school’s wide-open playground, but it has an added benefit: Children are most susceptible to asthma, so if scientists monitor the air where they play, they can protect the littlest lungs. The city contains better and worse pockets of pollution, so in this moment, I am sharing the same pocket as our little canaries in the coalmine. The canaries are nowhere to be seen; outdoor recess is canceled on red-alert air days. We are into Day Ten of the Mother of all Inversions, and I am struggling to inhale enough oxygen through my honeycomb charcoal-filter mask.
“You mentioned you’re a writer,” Bowen says. “You a reporter?”
“No,” I say, pulling down my mask so he can hear my raspy voice. “I’m a creative writer.” I don’t feel like explaining creative nonfiction, so I stop there.
“Good,” he says. “I mean — ” He steps closer, leans in, and knits his fingers together. — “we have to log all our interactions with reporters.”
We stand side by side, watching the wind-speed and direction instruments spin, slowly, as though underwater. It is hard to believe there is any wind at all.
“Want to take a tour?” He points to the two shed-like structures.
I walk with him, listening to the station buzz like a fly too close to my ear. I did not expect it to make so much noise. I did not expect it to be electric. I always pictured giant HEPA filters hung up on flagpoles, passive and silent. Then I realize: That I can hear it at all means it must be buzzing ten times louder on the other side of its smog muffler.
I follow Bowen up the stairs, feeling the vibrations of the humming trailers, and wonder how much electricity is required to keep this station running. Electricity contributes to inversion air because of the power-plant emissions.
On the way up, I glance at a playground slide, its red, blue, and yellow as brilliant as a Superman costume against the brownish-gray sludge in the air. “Do the kids pester you in the lab?” I ask.
“No,” Bowen says, shrugging, already at the top of the stairs. “They pretty much ignore us.” He looks resigned, maybe a little sad.
“If I were a little kid at this school,” I tell him, “I would bug you every recess.”
He shrugs again, and I glance at the slide one more time.
The kids are steeping in it.
On the roof, I can peep into the backyards of several houses behind the school. I wonder if those people have any idea what these air-dropped meat lockers do — if they realize that when they log into the Utah Air Quality site that the reading is literally their air.
When Bowen opens one of the machines and removes a stack of filters, I am shocked at how tiny they are, like stacks of tiddlywinks or poker chips.
He shuffles them in his palm, and I imagine all those bright red and blue plastic rings piling up in a landfill. As the filters degrade, the particulate disperse into the soil. Ashes to ashes, dust to dust. When desert winds kick up Utah’s parched earth, are they stirring pollution right back into the air?
“Do you keep them?” I ask, gesturing to the filters. “I mean, when they’re used?”
“We throw them away,” he says.
Of course, even if they recycled them, where would the particulates go? Clean them out of the honeycombs and dump them in the dump. Either way, we are burying the problem.
I think about the charcoal mask I am wearing, and how I will throw it in the garbage when its nooks and crannies are crammed full. I think about the carbon and zeolite HEPA filter I stuffed in the trash bin this morning after installing a fresh one. We are burying the air in the earth.
Is air monitoring sustainable? Is protecting our lungs sustainable? Is breathing sustainable?
And then I remember: My filters work by adsorbing particulates — not simply absorbing, but adsorbing, too — meaning the filter and molecules are attracted: like to like.
Bury those filters, I think. Let them fill up a landfill. Let like attract like. Let Zion do it to itself.
By the time Utah doctors implore Governor Herbert to declare a public-health emergency because of the bad air, it is already too late for me. Sometimes my lungs feel like helium balloons, and no matter how hard I exhale, I cannot force out the air. I gasp and gasp until I am certain my lungs will pop. People always think of breathing as inhaling, but the body does not inhale because it needs air; it inhales because of too much carbon dioxide in the blood. In this sense, breathing means expelling poison. I cannot expel this poison.
The asthma doctor confirms it, pointing to my pulmonary function report and declaring, “You had trapped air in your lungs.”
“A mini-inversion,” I say, my voice barely a whisper. The pollution has damaged my vocal cords, too.
“Exactly,” he says. “Particulates and all.”
I consider this for a moment, how I am a microcosm of Zion now. What does that mean for a Gentile?
He seems to sense my confusion. “What you have is called extrinsic asthma,” he says, “meaning it does not come from within you. It is not part of you. It was triggered by something external.”
I want to tell him he is wrong, that my asthma is intrinsic. I want to tell him about the cloud computer, the intelligent design, the atonement. I want to tell him about the temple, how it is yanking heaven down to Earth. How some of us cannot breathe the atmosphere in Kandor, and that is intrinsic. I want to confess about the mine, how I have been looking at ads for the Daybreak housing development at the base of it, even though — because I know — the fugitive dust will be worse there. How like attracts like.
Instead, I nod and tell him I will inhale a steroid medication through an aerochamber and wear my honeycomb mask. I tell him I will buy a new HEPA filter. I tell him I will beat this, even though I know I have already succumbed.
I am the fugitive dust. The fugitive dust is me.
“What if I leave?” I ask.
“You might get better. You might not.”
“If I don’t get better, does that mean it was intrinsic?”
“How wonderful would it be if all you had to do was leave?”
Family and friends, witnessing the Mother of all Inversions on national television, urge me — beseech me — to move out of Utah, to move back home, to move anywhere but here. “We have clean air in Minnesota,” an old high-school friend posts on my Facebook wall. “We have clean air in Iowa,” my family back home writes. “Come home.”
I tell them my husband and I are searching out-of-state job boards. I tell them we are apartment hunting. I tell them we are making plans.
I tell them I am running a HEPA air purifier twenty-four hours a day.
I tell them I am inhaling my asthma meds, staying indoors on red-air days, and taking my vitamins. That I am eating dark chocolate daily, as Utah doctors recommend, that the antioxidants will shield me.
I do not tell them this: that I suspect they want to save me from conversion, not inversions.
I do not tell them my sickness is intrinsic, that it is part of me.
I do not tell them about atonement.
I do not tell them that the sicker the air makes me, the more I want to stay.
In the thick, blue air of an inversion, I venture out for the first time in weeks. A man shuffles past me on the sidewalk, cradling a transistor radio. He adjusts the antenna and tucks his chin to whisper into the speaker: “Joseph Smith, yes, I can hear you now. The signal is clearer because of the air.”
Last week, Melissa Chadburn and Carolyn Kellogg published a disturbing expose in the Los Angeles Times about literary grifter Anna March.
Or is it Nancy Lott?
Or Delaney Anderson?
Or Nancy Kruse?
So many writers — mostly marginalized — are tweeting stories about how Anna did them wrong: bullied them into editing for her magazine; bailed on payments; canceled retreats with no notice; threatened them.
Other writers are blaming Anna’s victims, calling them “fame hungry” or “lazy.” They are wrong.
The blame lies 100% with Anna March.
And yet, there is a reason Anna March targeted marginalized writers, mostly writers of color. And there is a reason Anna March — a white, able-bodied woman — got away with it for years. Anna’s cons never could have succeeded without the very injustices she claimed to be fighting as a pink-haired Feminist Killjoy.
I want to share a perspective that’s been left out of the narrative, but has been on my mind since Anna March first came onto my radar in September 2014: how she built her entire career on exploiting her then-boyfriend’s disability.
And how you all celebrated her for it while staying silent in the face of disability discrimination.
November 2014, two months after adding Anna March on Facebook.
I have just published a viral essay — Strange Flowers. (CW: CSA) My writing has never gotten this kind of attention. I am overwhelmed by friend requests, emails from strangers about childhood abuse stories, and accusations that I made it all up.
Like this comment on The Manifest-Station (since removed), attempting to discredit me by way of discrediting my medical experiences:
Even years before #MeToo, Coco knows it’s not a good look to attack the facts of my abuse story. Instead, she homes in on my dental extraction. It could not have taken that long. The dentist could not have been so weird. It’s easy to discredit disabled people this way because the machinery is already in place: doctors also don’t believe us. They gaslight us, abuse us, and disregard our experiences in favor of whatever some outdated medical textbook written by a white, cis man says.
Just for laughs, I recently asked my mother — who drove me to the extraction and waited in the lobby — if she remembered the weird elephant tooth:
Yes, that extraction really happened, and it took so long for two reasons: I went to a discount college town dentist, not an oral surgeon, and my genetic connective tissue disorder (not yet diagnosed at the time) makes dental work excruciatingly complicated.
I could show you records of other extractions, too — all many hours long. But I won’t. Because I don’t owe you anything.
But Coco also goes after my physical pain, too, calling it “honest” but wrong.
Here is the thing: I don’t remember a day without pain. I have Chiari-Syringomyelia and Ehlers Danlos Syndrome, amongst other conditions. I live in pain every day of my life, and that pain — plus my epilepsy — formed the basis for why I was an easy target for childhood sexual abuse. Epilepsy, a developmental disability, carries a 90% risk. I also have learning disabilities, am part deaf, have central auditory processing disorder and am bipolar.
For me, there is no eros without pain. Sex hurts. Like anything else in my life: it hurts.
Coco wants to disembody my sexual experiences–remove the pain, remove the trauma. But the trauma is inextricably linked to the pain, and the pain to the trauma.
Combine those issues with complicated grief + mania (I was manic when some of the events in Strange Flowers went down) and you get that “surreal landscape” that put Coco at dis-ease.
Then the agents start contacting me. They like the surreal landscape and the magic. They like my voice. “I’ve never read anything like this,” an agent says.
Except, they don’t want me to be disabled — only to write like I’m disabled.
An agent wants to know if I “still have seizures” and he is worried about my mental illness.
“I don’t want to work with someone who might commit suicide,” he says.
He wants my neurodivergent, disabled narrative, except can it come without a disabled body attached?
He is just like Coco.
Enter Anna March.
I seek advice in a Facebook group for women-identified writers, and Anna March comments that this agent is just concerned, maybe a little paternalistic. Anna is a new Facebook friend. We met through her New York TimesModern Love piece a few months ago, about which I have mixed feelings because, in it, she erases her boyfriend’s disability:
Here’s the thing about Adam and me. Despite all appearances, with him being disabled, I actually consider myself to be the less “able” person in the relationship. People may assume that Adam is dependent on me, but I think it’s the other way around: He’s the stronger one, and I rely more on him.
Right down to the quotation marks around “able,” Anna simultaneously erases Adam’s disability and wants it to be the center of their love story: Look at me, she says. I love a man in a wheelchair!
But also: My boyfriend isn’t disabled at all!
Even the illustrations are erasure:
Anna literally occupies his wheelchair. Except it’s not an actual wheelchair. It’s made of bricks, a symbol of their new, 3-story cottage:
One evening after the contractors left, Adam, trying to help, picked up a heavy box of discarded bathroom tiles and other trash and headed for the pile outside. As he rolled toward our mudroom, the box slipped off his lap, sending dozens of filthy tiles crashing to the floor along with someone’s leftover Big Gulp cup, which splashed soda over freshly painted walls.
I didn’t know whether to scream, cry or run away. Instead, I said: “Leave me alone! I don’t need your help.”
Adam disappeared, and I cleaned up alone, crying.
“I can’t do this,” I whispered as I swept and scrubbed. Not this house or this man.
Abled readers probably do not pick up on it, but this is abusive. You can’t buy an inaccessible house and get mad when your disabled boyfriend experiences … access barriers. In fact, disabled people face a much higher risk of domestic violence in part because abled partners can wield access like a weapon.
“You would never do that,” I say to my husband. “When I drop things or make messes, you always offer to clean it up and tell me it’s no big deal.”
Anna takes it one step further: She steals Adam’s disability — his spinal cord injury — for herself, as metaphor:
That’s why people who think Adam would be lost without me have it backward. After his world fell apart at 16, he rebuilt it, year after year, and now he is a fortress. My world was also blasted apart when I was a child, but I’m just getting a handle on it now. In many ways, it’s as if I’m trying to escape from a crushed minivan of my own and having to remind myself, just as he once did, that I’m O.K., that I’m alive.
I have scoliosis, cervical instability, and a spinal cord injury (in my case, caused by a birth defect in collusion with a genetic connective tissue disorder), and every single day, I grind my teeth as people use my Jenga Tower spine as a metaphor for cowardice and even evil:
I am a patient at NIH because of my spine. Imagine seeing that on a Twitter feed run by — who? Doctors there?
I have trouble standing upright. I am not a metaphor for Paul Ryan or Mitch McConnell.
And Adam’s body is not a metaphor for Anna’s trauma or her “messes,” as she alludes to her shady past.
And besides, some of us carry both physical disabilities and psychological trauma: using one as a metaphor for the other erases our complex experience. My abuse — my childhood “crushed mini-van” to use Anna’s metaphor — was because of my disabilities.
Anna ends the piece by essentializing Adam as “Prince Charming in a Wheelchair,” listed along with “a yard full of trash” as the elements of her life.
When it’s convenient, poof! He’s disabled again.
And she was praised for this. She got into the New York Times for this. While I am called a liar about my childhood trauma because of my disabilities.
See the problem yet?
Anna messages me privately to ask who the agent is, and I spill the beans. Anna seems to know her way around the lit world, and she seems to genuinely care about my writing. I’m confused and overwhelmed. I don’t know what else to do.
She writes back:
But here is the thing.
She couldn’t know who the agent is. The agent told me that he normally doesn’t rep writing like mine, but he fell in love with my voice – had never seen anything like it – and he couldn’t help but ask if I had representation.
If he didn’t normally rep my kind of writing (and he really didn’t; I checked out his clients), how would Anna know?
I ask a trusted former grad school mentor instead. He says, “Your disabilities are not the agent’s business.” Run.
This sounds like good advice, and I take it.
Looking back almost four years later, I see what I didn’t then: Anna wanted to look connected. Maybe she was even fishing, but mostly, I think she wanted to look omniscient. So connected she knew everybody and everything.
Imagine you are me: Your “social justice” MFA alma mater is sponsoring a conference that systematically shut out disabled writers, and all your colleagues are gaslighting you about it.
“I don’t know how to make them accept your panel,” a friend says. As if all my anger were just sour grapes?
I had hoofed all over Salt Lake City to get this writer’s books into stores, and she couldn’t speak up to get my foot in the door at AWP: I won’t ever forget it.
“I don’t know what to do with that much anger,” another says.
Now imagine this:
Your friends are all there, in Los Angeles, partying with a woman who exploited her boyfriend’s disability to get famous — LOOK AT ME, I LOVE A GUY IN A WHEELCHAIR — and not a single one of them has spoken up for disability inclusion.
The year before — when all the disability panels got rejected — I filed a Department of Justice complaint against AWP, and I got a right to sue letter in January 2016:
On Facebook, abled writers tell me I shouldhave sued.
I say: With what money? Why can’t you protest and speak up? Why don’t you do the work, too?
They don’t. But they party with Anna March.
AWP is in D.C. I will be at NIH at the same time, lying in the MRI tube for hours right up the street from where all my friends are partying.
Anna is good to me about the interview. I have no complaints.
But then Anna starts asking for writing. Message after message, even offering a column and payment.
By the end of May, I know this is not a real offer. I’ve heard some things but kept quiet because more marginalized friends are afraid of what Anna might do.
Then, after an exchange about inaccessible retreats, she sends me this:
She is cloaking herself in disability as cover for her cons:
so i’m not a stranger to the world of disabilities, though of course i’m not expert, but i’ve been sick on and off the past couple years and people are horrible about my inconsistency as a result and it’s made me think, a lot, about disabled folks and that angle of it and the chronically ill. also, it’s made me dislike a lot of people.
The thing is, chronically ill people do feel awful about our inconsistency and lack of productivity. We hate backing out of events & letting down colleagues and friends. I want to be sympathetic, except I know too much about her now, and I sense a pre-emptive excuse.
I sense she wants to use me, get me on her side using disability. Look how she lays down her Gallaudet street cred (is it even true?) and even mentions Adam again — by then, long since broken up. Maybe she thinks a white disabled woman coming to her defense will drown out allegations from women of color. I can’t know what she’s thinking, but something feels wrong.
The worst part? In the wake of the LA Times expose, writers are tweeting “red flags” for scammers, including — you guessed it — someone talking too much about their chronic illness. Because Anna did it.
Chronically ill people already face stigma when we talk about our illnesses. Now we will look like cons. Because Anna stole that space from us–just like she stole that space in Modern Love for a physically disabled writer to tell a love story.
I have two panels at AWP in Tampa, but I can’t fly because of blood clots. AWP says Skype will net “bad reviews.” My panel lead wants me to stay quiet for fear of retribution. (Oh, how many of us stay quiet for fear of retribution.) I back out.
When I finally leak AWP’s email to DisDeafUprising on Twitter, abled writers don’t care. Again.
One able-bodied writer calls it “shenanigans,” as if violating my civil rights were just like dropping a water balloon or shooting a spitwad.
Anna March says, “I want people to think and understand about what they’re saying about ability and disability when they say that someone who’s able-bodied is somehow doing something noble by dating someone with a disability.”
But that is exactly what she banked her entire career on.
By July, the LA Times unmasks Anna March.
By August, Anna March has a panel for the 2019 AWP.
The topic? Endings in End Times: How to craft final notes that imply light and dark, open and closed, emotional and intellectual complexity? We discuss struggles and strategies for endings that feel satisfying for readers, and yet true to the work, the moment, ourselves.
Meanwhile, there is a panel that lists disability along with murder and natural disasters as “traumas.” My backbone is not your forest fire, I keep repeating to myself. My backbone is not your forest fire.
I want to be true to this moment. How does the story end? Will you finally include disabled writers, or are you always going to party with the people who use us?