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People know me as a researcher who pokes around in special collections & archives whenever I can, and so I get a lot of questions on finding documents that aren’t readily available.
The question I get asked the most:
How do I get my (dad’s, grandpa’s, brother’s, mom’s) military records?
The process depends on a few things:
Is the family member deceased? Are you defined as “next of kin?” How long ago did they serve? Which records do you need?
If your family member is deceased, they separated from service LESS than 62 years ago, and you are next-of-kin (daughter, son, father, mother, sister, brother etc), then you need to fill out this form:
You can learn a lot more about the process at the National Personnel Records Center, which is part of the National Archives. It looks like right now they are behind due to COVID, but they have a skeleton crew in place for emergency requests.
You will need to include proof of death, which can be as simple as an obit. I actually used obits every time I needed a record, which both proved the family member had died, and that I was next-of-kin, since I was named in the obit.
If your relative separated from service 62 years ago or longer, the record is now “archival” and you do not have to be next-of-kin. The process is similar, but you will need the instructions on this page.
Sometimes, friends ask me how I got my father’s, uncles, and brother’s VA records, which are not the same as personnel files. These are medical records of treatment in the VA and are protected by HIPAA and other laws. These records are much harder to obtain, for obvious reasons.
1. For my brother’s, I was next-of-kin, and because my (half)brother had died in mysterious circumstances while facing trial, and I was in the middle of obtaining a genetic diagnosis, I proved sufficient urgent reason to release them. It didn’t come without a bit of struggle, though! I actually had a nerve-wracking phone call with the VA General Counsel, during which he drilled me as to how I held the same standing as another half-sibling who had been listed as next-of-kin in the medical records. Obviously, I satisfied his questions.
2. For my father’s records, it was simple: he died, and my mother had power of attorney. She simply signed my request on Form 10-5345, and they were released.
3. For my uncle, I faced a bit of a battle. I requested them on behalf of my father, so he wouldn’t die not knowing what happened to his (half)brother. It’s a long story, but my uncle was institutionalized most of his adult life, and the family always believed something had happened to him in the Navy. His personnel records had been sealed since 1959, and I secured their release with no issue. His VA records, I was at first denied. However, my father was in a similar situation as I had been with my half-brother. I simply pulled out the letter from General Counsel explaining why I should receive my brother’s VA records, and I told the VA it would be arbitrary and capricious to grant me a half-brother’s VA records under very similar circumstances, but deny my father the same thing. I won! (If I hadn’t won, it turned out my aunt stood ready to sign the form, as she was his conservator, but I didn’t need it.)
Diagoras, who is called the atheist, being at Samothrace, one of his friends showed him several pictures of people who had endured very dangerous storms; “See,” says he, “you who deny a providence, how many have been saved by their prayers to the Gods.” “Ay,” says Diagoras, “I see those who were saved, but where are those painted who were shipwrecked?”
–Cicero, On the Nature of the Gods
The day after the 2016 election, I was perched on an examination table at the National Institutes of Health Clinical Center for my first appointment in a syringomyelia study. I had mailed the MRI CD showing a silvery cavity from C5-T1 within weeks of my syringomyelia diagnosis, alarmed I might need surgery I could never afford. The study seemed like a good way to get top-notch care for free with the added bonus of contributing to science.
I signed the informed consent for surgical risks: paralysis, loss of sensation, infection, hydrocephalus, repeated surgery–and wondered how in the hell I would answer if the doc said I needed brain and spinal cord surgery thousands of miles from home.
Instead, when I finally saw the study docs and discussed a second syrinx discovered in my thoracic spine, he asked me point-blank, “How awful is your life?”
It sounds terrible typed out like that, but I swear it wasn’t. I got his meaning right away: What’s this thing doing to my quality of life? Is it worth opening up my skull and spinal cord?
“I’m a pretty adaptable person,” I said. “Life is different, but it’s not awful.” I thought about how I used to walk without a mobility aid, how much I missed activities that were off-limits now, the burning electric pain, the weakness in my hands. “It’s not bad. Just different.”
“Then it’s probably not time to operate.”
It wasn’t the sole basis of his decision and I’m leaving a lot out, but the point is: I agreed.
I did not and do not want surgery. I have read the statistics on Chiari-Syringomyelia surgery, and they aren’t great. Some people recover and go on to live free of the pain and functional losses. Others wind up going through the whole shebang a second or third time. Some people’s spinal cords wind up like Swiss cheese:
photograph from a research study of a postmortem specimen of spinal cord who had been treated for Chiari 1 and syringomyelia with shunts. There are several shunts stuck inside the spinal cord.
If surgery helps, that’s great. If I can avoid surgery, even better.
That’s just me. I can’t speak for anyone else.
Back in my syringomyelia patient groups, though, total strangers said my doctors didn’t know what the hell they were talking about.
“Post your MRIs,” they said, and I did.
“Oh yeah, tethered cord. Definitely. And craniocervical instability.” I had no idea what they were looking at.
“Your doctors are gaslighting you.”
But I didn’t feel gaslit, at least not about surgery. I had felt that way at the doctor before, but not this time.
I knew better than to argue with a patient support group, though. A few months prior, I got booted out of a local Chiari group because I didn’t want to follow up with their fave rockstar East Coast neurosurgeon who had operated on virtually all of them. I didn’t want to see him primarily because he had operated on virtually all of them. It seemed a little strange to me how the group labeled every other neurosurgeon incompetent. Most neurosurgeons know nothing about Chiari, went the common refrain. Only this doctor can help you.
It’s true Chiari-Syringomyelia isn’t as widely known as it should be, but it’s also true there are numerous quietly competent neurosurgeons out there who can decompress like rockstars, too.
I never imagined with all my skepticism that years later, I would send my imaging to a different superstar neurosurgeon, believing he was one of only 3 or 4 people on earth who could help me.
___
I wish I could remember why or how I finally learned what craniocervical instability is, but to be honest, I think it was Instagram. I had just gotten my Ehlers Danlos Syndrome diagnosis and followed a lot of people with EDS hashtags. It seemed like everyone (not really, of course) was sporting neck braces and flying to New York, Spain, or Maryland to a short list of unicorn neurosurgeons. Only these doctors understand CCI, they all said. Since some of my symptoms weren’t explained by EDS or Chiari-Syringomyelia alone, I decided to check it out.
I chose a neurosurgeon who accepted DICOM files online, filled out his questionnaire, and uploaded my upright MRIs and rotational CT scans.
But here’s the thing: When I got my report back, it didn’t even sound like it was about me. The person on those pages sounded like they were dying. And even though my measurements were not extreme, the recommendation certainly was: fusion all the way down to T1.
Something like this:
XRAY of cervical spine and skull from back and side; showing rods and screws from C1-T2, from the case study: A Case of Occipito-Thoracic Fusion for Skull Base and Cervical Multiple Myeloma January 2015 DOI: 10.4172/2165-7939.1000217
I was terrified. When I contacted the neurosurgeon office to ask how it works if you decide to get surgery, they replied, “We can get you here as soon as next week.”
Next week?
I’ve been hanging around neurology offices long enough to know that “next week” is not normal. It set off every internal alarm. Plus, he wanted cash payment, no insurance.
I contacted my geneticist, got a referral to a local neurosurgeon, and here is how it went:
I'm still processing what happened today at my neurosurgery appointment & I will write a post probably tomorrow, but for now, a word of caution to my zebra friends w/CCI or wondering about CCI:
He said, “Look, I do more fusions than anyone In the world, not just for CCI … and I won’t do them unless absolutely necessary because they are extremely disabling.”
He locked eyes with me. It was … I don't know how to describe it. It was an incredible moment of compassion.
I loved that doctor. He told it like it was, but he was deeply kind, too. Never once did I feel he blew me off. In fact, he watched me so intensely he noticed few things nobody else had–and got me referrals.
Sometimes a “no” is not gaslighting. Sometimes a “no” saves your life.
Fusion surgery is indeed disabling. Losing range of motion is hard enough, but for someone with EDS, fusing one segment of your already-unstable spine means the next segment picks up the torque forces … and becomes unstable. Next thing you know, you need surgery again.
Thank god I was too broke for rockstar surgeon guy because what if I had the cash, hopped on a plane, and got all that hardware in my spine for … nothing?
And in fact, fast forward a few years, and my unexplained symptoms have explanations now — none of them CCI.
When I tell this story, people get mad. I get it. Plenty of people really do need CCI surgery and I am in no way denying it. At the same time, though, patient groups can make you think a treatment is more successful than it is — or that a doctor is more “rockstar” than they really are.
___
Survivorship Bias
from Wikipedia: an airplane illustration, viewed from above, with various red dots on the wings indicating damage
During World War II, planes that survived battle got examined for damage to determine the best spots to place armor.
Abraham Wald objected. Mechanics only saw planes that made it back. What about the planes that got shot down? Look at that damage, and you’ll find the weak spots. That’s where your armor goes.
Survivorship bias: when you don’t see what’s fatal because you never see the fatalities.
“I have good news and I have good news,” the blue-jean clad Bolognese gushed in his Long Island office, sharing Pringles with Katie and her twin brother Brodie.
Katie’s operation, Bolognese reported, was a roaring success. The Bryants heaved another sigh of relief when he said Brodie’s MRI had no sign of Chiari.
Then, Bolognese said something that chills them to this day.
“I think we should do the same [tethered cord] surgery on Brodie so he won’t develop Chiari later on in life,” Bolognese said.
“My husband and I looked at each other in shock, and thought ‘Is he kidding?'” Bryant recalled. “I knew right then and there we had made a terrible mistake.”
Tethered cord, CCI & Chiari-Syringomyelia surgery often go together and Dr. Bolognese is one of the most famous of the “rockstar” surgeons.
You will find patients like Jennifer Ronca, abandoned on the operating table under general anesthesia while her neurosurgeon took off on vacation. Imagine waking up braced for pain and finding out the surgeon never showed up.
The hospital — and many people I’ve encountered in patient groups — contend that case got blown out of proportion. It’s just a sensationalistic, overblown story about normal human error.
“I cried again,” Ronca told The News when she learned the hospital got off without a fine. “The Health Department never called me to hear the facts from me. It’s just another betrayal.”
Ronca said since the ordeal, she has suffered recurrent nightmares and pain that plunged her into a deep depression, for which she was hospitalized in October.
“I’ve had a lot of issues trying to come to terms with what they did to me. The Health Department just assumed there was no injury,” she said.
And if you start looking for the lawsuits, you will find far, far worse: people left paralyzed or dead, accusations of human experimentation (some of these surgeries and techniques are not standard of care) and more.
If you focus only on the good stories, you miss the risks — and the damage.
I am not out to tell anyone what surgery they need or don’t need. I won’t tell you which neurosurgeon to see. I won’t tell you who to trust. But I can share with you some documents I received from a public records request about one of the most famous surgeons, Dr. Bolognese (not the one I consulted), whose name appears on every list and has been promoted by the EDS Society:
“This program may represent one of the biggest frauds in the history of modern neurosurgery, of “‘Madoff’-like proportions.”
Remember what my local neurosurgeon said: I’d call it a bank transfer.
Read for yourself and decide. I can’t tell you what to think and I won’t. I have no personal experience with this particular doctor and no vendetta. His name comes up a lot in CCI circles and there just happens to be a lot of press out there about him. I want people to know the information is out there. All you have to do is look.
And there are plenty of neurosurgeons — maybe even a local or semi-local one if you’re lucky — who can help you. It’s not true you have to choose from the unicorn list. You have options. (Adding a note here: I understand the picture may be different outside the U.S., especially with nationalized healthcare systems.)
Here is my advice:
If you decide to pursue CCI surgery, get a second opinion. Heck, get a third. If possible, get at least one consult at a research hospital. No matter what: Do not rush to go under the knife for anyone who won’t take insurance. If a surgeon doesn’t take insurance, think of it as a red flag — maybe nothing is amiss, but maybe something is. File public information requests for complaints. Search court databases for malpractice suits and read the cases (oh my god, the cases). Information is power.
Your neck & spine are the only ones you’re ever going to get. Be cautious. Be wary. Inform yourself.
Note: Later, I will update this post with a Dropbox folder with more information. I want to include some of the lawsuits, but even though they are technically “public,” I don’t think the patients imagined a day where someone would retrieve the cases and blast them on the Internet. Redactions are in order. I’m working out some technical issues and will upload then or perhaps do a second piece.
“If we have truth, it cannot be harmed by investigation. If we have not truth, it ought to be harmed.” -J. Reuben Clark
In my opinion (And I ‘know’ I’m right!) The Book of Mormon can best shed its light at four-fifty-one degrees Fahrenheit –poem written by Mark Hofmann in prison
___
Eight years ago, I was digging around in an archive of the Mark Hofmann forgery & bombing case in a library in Salt Lake City, when I found a letter he wrote to his mother dated April 29, 1979. I recognized it immediately as one that had been quoted by Allen D. Roberts in Dialogue: A Journal of Mormon Thought:
As a college undergraduate, Mark wrote a theme in the form of a letter to his mother. In it, he protested what he saw as Church duplicity and secrecy, particularly surrounding its history. Writing with the arrogance and absolutism commonly associated with youth, he suggested an obviously felt chasm between what Church members really think and how they participate in the Church. He insisted that the Church could withstand the exposures of history, that honesty was best for individuals and organizations. It is telling that he did not express his own religious beliefs.
On 29 April 1979, the date on that letter, Mark Hofmann had already tried his hand at forging. He was familiar with both traditional and highly critical approaches to Mormon history. He had delved into many “mysteries” and, through his systematic reading in special collections, was delving into more. He wrote to his mother, “My conviction is that the truth is the most important thing. Our idea of reality of should be consistent with it.”
As a writer who had done a deep dive trying to understand Hofmann — learning to make ink, to forge (for the book–not real life), to age documents, even undergoing hypnosis and taking a lie detector because he had taken one (and passed)– that line had haunted me: The truth is the most important thing.
And it has haunted scholars, too: Is this Hofmann’s motive? Did he believe he was on a mission for truth?
Allen D. Roberts, in the same Dialogue essay:
The question of whether Hofmann created history-challenging documents for financial gain or whether his agenda included the undermining of Mormonism through its historical Achilles heel deserves close scrutiny. This is especially true since the Hofmann documents have had great impact on how many perceive Mormonism and their own lives in relation to it.
It is the intent of this paper to explore the question of motive in the forgery of early Mormon holographs. At the onset, I want to make it clear that I accept Hofmann’s confessions, together with the extensive forensic evidence presented in the preliminary hearing of April and May, 1986, along with the research that Linda Sillitoe and I have done, as documentation that all the key documents dealt by Hofmann, as well as numerous others, are forgeries.
Hofmann’s forged Americana, including the “Oath of a Free Man,” fit as neatly into American history as his early documents did into Mormon history (Interviews, Exhibit Q ) . None contained revisionist content, and many were highly profitable. Why, then, since Hofmann could make money from either testimonial or controversial Mormon documents, did he produce documents of a revisionistic nature — which were actually impossible to sell to some of his best customers?
Hofmann, after all, forged many documents that were true — not factually true (fake documents are inherently anti-fact), but true in a capital T sense. Take his biggest forgery: The Salamander Letter. In it, he portrayed Joseph Smith as a money-digging magician–facts long suppressed by the Church of Jesus Christ of Latter-Day Saints.
That’s right: Nothing Hofmann “exposed” was new. Fawn Brodie got excommunicated by the LDS Church in 1946 — forty years before Hofmann murdered Kathy Sheets and Steven Christensen with pipe bombs to cover up his forgery schemes — for writing No Man Knows My History, in which the truth about Joseph Smith as a money-digging con artist magician was laid bare.
I learned to make ink, forge handwriting, and age documents, all from Hofmann’s confession. I got handwriting exemplars from my brother’s Army records, VA records, and high school yearbook. I bought period-correct greeting cards. Once, I burned one of my elementary school stories, collected the carbon, and used it for ink: one of Hofmann’s processes. The forgery process formed a kind of meta-commentary on what it’s like to survive a crime for which there is no evidentiary proof, no criminalistics, only your word — something others have to take on faith. Maybe even something they know is true, but they suppress.
But back to Hofmann’s letter: When I finally got access to the full text in that library archive, something didn’t feel right. At first I was impressed by his eloquence and maturity, the way this young man engaged his mother in an in-depth discussion on institutional honesty. The more times I read it, though, the more it set off all my alarms as a college composition teacher: something in the voice & syntax didn’t sound like Hofmann. I had no evidence, just a gut feeling. I typed some of the text into Google, but no source material came up–not yet.
Later that same year, I got my proof. Here is a letter I wrote to a Mormon scholar at the time (edited for length):
I believe I have discovered a case of plagiarism by Mark Hofmann that has not yet been noted in any scholarship.
During research for a book, I visited Special Collections in the Marriott Library … I found the full text of a letter written by Mark Hofmann to his mother, dated April 29, 1979, in which he makes the case for personal and institutional honesty within the Mormon Church. Like others who have read this letter, I found it fascinating both in terms of the glaring contradiction between Hofmann’s beliefs expressed in the letter and his actions as a forger and murderer.
The content of the letter creates the impression that Mark Hofmann may have had a larger agenda with his Mormon document forgeries—as though he were crusading for “truth.”
I was struck by the letter’s eloquence, but I also noted how it did not seem to be his voice. As a writing teacher, I am finely tuned to shifts in voice that signal plagiarism. I told my husband that if Hofmann had turned this in for an assignment in my Composition class, I would have immediately suspected plagiarism. Since other scholars seemed to accept it as his genuine composition, however, I tried to wrestle with its implications in the context of his crimes. I, too, wondered what it meant in terms of any agenda he might have had.
Fast forward to September 2013. I was listening to the Mormon Matters podcast episode about the Ordain Women movement, and at the bottom of one of the pages, I noticed a link to a collection of essays by Frances Lee Menlove entitled The Challenge of Honesty and edited by Dan Wotherspoon.
I cannot explain how, but I just knew Hofmann had plagiarized that letter from one or more of those essays.
And I was correct.
See the attached text of Hofmann’s letter with my underlining where I have discovered outright copying or paraphrasing of Menlove without attribution, all from the first essay in Wotherspoon’s collection, entitled “The Challenge of Honesty.”
Frances Menlove published “The Challenge of Honesty” in the Spring 1966 issue of Dialogue. Mark Hofmann wrote his letter in 1979. We know Hofmann read issues of Dialogue from 1966 because he cites other articles from 1966 issues of Dialogue within the very same letter. [Side note: Later I discovered further plagiarism from other sources published in Dialogue.]
The letter is essentially a patchwork of plagiarized text from Menlove’s essay. Interestingly, Mark Hofmann gives credit to other sources within the letter, but not to Menlove. As a college writing teacher, I can assure you that this is a very common technique students use to hide plagiarism: citing supporting evidence for an entirely stolen argument. After all, the good argument is the hard part.
While a small footnote to the Hofmann saga, the find is significant, in a way, because so many people believe Hofmann was waging some kind of “truth” crusade against the church, and documents like that letter have added fuel to the fire. They sort of puff up that mythical image. And yet, here Hofmann was, unable to muster his own original words for what honesty means.I suppose a conspiracy theorist-type thinker might respond by saying, “Well, he still found those words valuable enough to steal.” To me, however, stealing those words is a very different thing than actually composing them. He quite literally had no words on the subject of honesty. It is almost as if he was planting this “evidence” of his mythical self way back in the day before he upped the ante, forging his own motives or something.
There is something very … what’s the right word here? poetic? … about catching Hofmann in something by digging around in special collections, too. I mean, that was his stomping ground for his schemes.
To my knowledge, no scholars have uncovered this plagiarism as of yet. In the cases where the letter has been cited or analyzed, no mention of plagiarism has been made:
In Dialogue: A Journal of Mormon Thought, Allen D. Roberts, one of the co-authors of Salamander, described this same letter … it seems clear to me that Allen Roberts took this letter to be an original composition by Mark Hofmann …
In the book Salamander by Linda Sillitoe and Allen Roberts, the letter is also mentioned, on pages 229-230 of the paperback 2nd edition. On page 230, Sillitoe and Roberts write:
On paper, Hofmann’s plea for honesty was eloquent, though not, in itself, factual. In a highly rational format, he was confronting his mother on a deeply emotional subject. He spoke of a dilemma—a person who lived in two worlds because doing otherwise was neither possible nor acceptable. He proved his point by not mailing the letter. He kept it.
The “non-factual” aspect referenced in the above paragraph is a false story Hofmann tells in the letter about meeting with Church Historian Leonard Arrington. The letter itself, however, is taken as Mark Hofmann’s own writing (an “eloquent” “plea”).
Given that no Internet existed at the time for easy access to back issues and plagiarism-checking, and that Menlove’s essay would have appeared some 13 years before Hofmann wrote his letter and 20 years before scholars would have even been analyzing Hofmann’s writings, it is understandable that this plagiarism may have gone unnoticed. I just happened to have read Hofmann’s documents in a very compressed timeframe, comparatively.
So what did it mean that Hofmann plagiarized this letter to his mother–that a document widely believed to reveal his “motive” wasn’t even his own words? Was I correct that he intended to plant this letter to “forge” a motive? After all, he never even mailed it.
The late Linda Sillitoe, co-author of the book Salamander, might have said Hofmann scholars are asking the wrong question. In a talk entitled “Salamander: A Homespun Tragedy,” she dissected “a rift between the opinions of those who consciously or unconsciously believe that the forgeries are, in fact, more significant than the homicides” and those so disgusted by the bombings that the forgeries are neither interesting nor relevant.
“I often wonder,” she said, “whether that rift is caused by a sense that religious belief, or history, or ideology, is more important than individual lives? Or is it that murder is a messy, not-nice business, while forgeries are cleaner, rational and intellectual?”
Is truth the most important thing? Which truth?
The 1979 letter is less a statement about Hofmann, and more one about us: a Rorschach of sorts. Why are we laboring so hard to ascribe motivation to the forgeries, when this man committed brutal murders using pipe bombs to cover them up? Nobody is saying it’s worthless or wrong to wonder about a motive for the forgeries, just that it says something about us when we center it.
By this time, I had been writing letters to Hofmann for a few years, often penned in his own iron gall recipe. I talked to him about my project with my brother, about inks, about magic. I wrote a letter to him about his plagiarism, too–not asking him why, not asking him what it meant. I just wanted him to know that I knew.
“Aren’t you afraid to send it?” a friend asked. “I mean, he tried to put a hit on investigators from prison.”
“No,” I said. “I think he maybe even wanted to get caught.” It wasn’t just that I wanted him to know that I knew; I wanted him to know I was theonewho caught him, that I was just as good at digging around in archives as he had been at the height of his forging.
For a long time, I bought Mark Hofmann’s explanation about the bombings: that he cracked. That he wasn’t a violent, murderous person by nature–that he just lost it when he thought he’d be exposed as a forger.
I think I needed to believe him.
He blew up his own car with a third pipe bomb, shattered his kneecap, and claimed it was a suicide attempt. Was this repentance?
1987 Los Angeles Times photograph of the front of Mark Hofmann’s Toyota MR-2 after the bombing.
But I had lingering doubts, too. I went to the Judge Building to retrace his steps on October 15, 1985, the morning he planted a bomb that killed Steven Christensen–purchaser of the Salamander Letter on January 6, 1984 for $40,000.
side by side of the Judge Building the day of the bombing in 1985, with police investigators marking bomb shrapnel and evidence; and the same hallway in 2012
I kept a notebook of decisions Hofmann made at every step.
Decision #1 Entering the Judge Building. Under his left arm, he cradled the booby-trapped package.
Of course, Hofmann disabled the mercury switch for his own safety, ice-picking a hole in one side and taping one wire outside, cutting off the circuit. When he delivered the package to Christensen’s door, he unstuck the outer wire, threaded it back into the hole, and completed the switch.
Decision #2 I press the call button. I am not ringing an elevator; I am ringing the doorbell to a time machine. In the preliminary hearing, witness Bruce Passey said it took 3 to 4 minutes from the time Hofmann walked in to the time the elevator dinged.
Set a timer to 4 minutes: it’s a long time to not change your mind.
Decision #3 A young law clerk slices his hand through the closing doors, as if slitting an envelope seal. At first, I feel like he is intruding on my private correspondence with Hofmann. I wanted to do this alone. Then I realize: he is my Bruce Passey. That is the difference between secrets and history: in history, there is always a witness, always corroboration; otherwise, how does it become history?
“What floor do you want?” He says.
I start to say 6, and I correct myself. Hofmann pressed 5 on that morning. Then, when everyone exited and he had the car to himself, he pressed 6.
“Five,” I say. “Thanks.”
I feel a shiver when he presses 3. That was the same floor Bruce Passey chose on October 15, 1985.
Decision #4 Law clerk out of sight, I press the call button for 6th floor.
Decision #5 The ride takes 50 seconds, during which I do not change my mind.
Decision #6 On the 6th floor, I exit the elevator and turn right, toward suite 609–or what used to be suite 609 in 1985. The doors have changed numbers now.
Decision #7 If today were October 15, 1985, and I were Mark Hofmann, I would be watching insurance agent Janet McDermott from suite 610 as she knelt and almost picked up the box labeled To: Steve Christensen in black magic marker.
“What kind of an expression was on this person’s face?” Prosecutors asked her at the preliminary hearing.
“Noncommittal expression. They weren’t angry at me; they weren’t smiling at me. There was no recognition.”
No recognition. Hofmann knew if she touched that bomb, she would be blown to bits, and he said nothing—did nothing.
Decision #8 Walk away. Leave the bomb for someone to find.
So many moments to turn back. So many times he could have spared Steven Christensen’s life.
And the other bomb? That one killed Kathy Sheets, unlucky wife of Hofmann’s real target, in her own driveway. It had a flaw in the mercury switch. Hofmann knew it, and he left it to fate. It didn’t even have to go off for his plot to succeed: all he needed was someone to find that bomb, throw the cops off course in the investigation of the Christensen murder. From Hofmann’s Board of Pardons hearing:
Transcript:
Hofmann: At the time, I rather, well, as strange as it sounds, it was almost a game as far as, uh, I figured there was a 50% chance it would go off, a 50% chance that it wouldn’t.
Q: It seems to me that a man who created the kinds of documents you create, well, you have a knack for things technical. It seems to me that a man with that sort of technical know-how could ensure that detonator had not gone off, and you could have served your purpose without killing Mrs. Sheets. Was that on option?
Hofmann: It was certainly an option. At the time I don’t think I considered that. Like I said, it was almost a game as to whether it would or wouldn’t.
Hofmann: What I had hoped would happen is that nobody would die by that bomb.
Q: But you knew that it was possible that anyone might die by that bomb, that a child walking by the garage might die by that bomb.
Hofmann: My thoughts at the time when I made that bomb, my thoughts were it didn’t matter if it was Mr. Sheets, a child, a dog, you know, whoever.
A child, a dog, you know, whoever.
The truth is the most important thing. Our idea of reality should be consistent with it.
Looking back now, I wonder if when Hofmann wrote that letter in 1979, he not only planted the evidence for his own motive, but for the complicity of people who wanted to find it.
We have officially launched The Log Project website and are at work on the codex, installation, and “little forest” created from logs collected all over Cedar Rapids in the wake of the derecho storm on August 10, 2020, when the city lost 70% of its tree canopy to winds the equivalent of a Category 4 hurricane with no warning.
codex, an ancient manuscript text in book form
from Latin caudex for “trunk of a tree.”
A codex is an ancient manuscript book, usually comprised of vellum—not the kind found on the shelves of your local Dick Blick, but sheets of prepared animal skin — bound along one edge. Some codices were made from wood, like the Kellis Isocrates Codex found in Dakhleh Oasis. Visualize the plates of the Book of Mormon, except instead of metal, thin wood plates or boards, strung together on one side through holes.
The ancient person who made the Kellis Isocrates Codex etched an inverted V on one side of a single log before cutting. So long as the inverted V aligned on the spine, the “pages” were in order and the uneven surfaces of facing plates would fit together flat.
Our codex will not be made from a single log, but rather, logs collected from sites all over Cedar Rapids. Slices of all different diameters and species will clang together awkwardly and stack precariously. The form is the story: a city uprooted, out of place. It also records the variety of trees felled by the Hurricane Derecho, as Iowans have come to call the storm.
In a way, it creates one tree trunk from many, embodying the original Latin meaning of codex.
We have been careful to tag every log with its provenance so that each wood slice tells its own part of the story. We will use a pyrography pen to draw and write stories, as well as homemade inks & paints — some made from storm debris.
I always look for where time has a physical existence (part of the reason I enjoy making inks & aging them!), so we are slicing the logs at different intervals — before and after seasoning the wood — to play with the living nature of the materials. When cut too early, the slices will crack as they dry:
round slice from a log with a lightning-bolt shaped crack in it
We have debated what to do with the cracked ones — a shadow codex, perhaps. I immediately wanted to fill the cracks with resin — the art kind, not the tree kind. I like the idea of synthetic resin where natural tree resin should be. Not as a repair, but as a trace of the Anthropocene, much like plastiglomerate.
Plastiglomerate is stone with banded plastic formations made from plastic bags, plastic toys, plastic wrappers, plastic to-go boxes, plastic jars, plastic spoons, plastic straws, plastic water bottles melted into the rock by campfires. Tides swallow plastiglomerate, where it sinks to the ocean floor and lays down a fossil record of the Anthropocene.
National Geographic cover with what appears at first to be an iceberg, but deep beneath the water, instead of ice, it is a plastic bag with the handles flowing in the water. It says “Planet or plastic?” in a large white font.
I may also try some molding plastics in those cracks. Or melt down some old asthma inhalers (minus the cartridge) — my beneficent tailpipes, spewing exhaust made of benzene, made of gasoline — I’ve been saving for art. (I already made art from the medication pamphlets.)
Last night I even thought of these plastiglomerate codex plates as the entirety of the codex: a mutus liber like my tattoos. What if the codex were pure material and that is the story of the storm?
Or what if, like my original thought, this was the “shadow codex,” sort of the codex beneath the codex?
But also: this business of making purposeful plastiglomerate. A forgery of a forgery. For what is plastiglomerate but a forgery?
I love exploring process out loud and there is much more to come — here & at The Log Project.
___________
Karrie Higgins needs help with catastrophic medical expenses. They have a fundraiser through Help Hope Live, a nonprofit that verified their conditions and only releases funds with proof of expense.
If you would like to tip Karrie for their art or writing:
empty paved street lined with tree branches with orange leaves; above them are damaged but still green trees
A month after a derecho with winds equivalent to a Category 4 hurricane hit Cedar Rapids, the time is out of joint. Decaying tree debris piles look like fresh-raked leaves in autumn. But it is not autumn, not yet. Look above, where leaves in the ragged tree canopy are still green. It’s still summer.
“The tree rings are doomsday clocks,” I keep thinking, as we drive past piles of logs spreading into the roads.
tick tick tick goes the Carbon-14
Elements are supposed to be eternal; neither fire nor millstone nor flood can destroy them. But Carbon-14 is not an element; it is a stopwatch. Unlike the other two natural isotopes of carbon—Carbon-12 and Carbon-13—Carbon-14 is radioactive. It has a half life. The time it takes for half of it to rot: 5,700 years.
Carbon-14 does for time what God did for humankind: it gives it a body.
Carbon marries diatomic oxygen, and the two elements become one molecule, one body: carbon dioxide. From there, plants photosynthesize it into the fibers of their being. Animals eat the plants, and carbon forges its way into animal tissues and bones. Most of that carbon will be Carbon-12, but some of it—just enough to detect with radiometric tests—will be Carbon-14.
Inside all living things, the proportion of Carbon-14 to Carbon-12 calibrates to the ratio in the air.
This ratio remains in equilibrium as long as plants photosynthesize and animals eat, but the moment roots get yanked from the soil or a heart stops its thump, thump, thump, Carbon-14 begins to decay, while Carbon-12 lives on.
Time does not end at death: it begins.
Plants exposed to fossil fuel pollution are natural forgeries, dating much older than their actual age: calibrated to the air of long-dead things on fire, depleted of carbon-14. The Seuss Effect, it is called, after Hans Seuss. But we can correct for it: Inside the trees, the rings record carbon ratios year after year, a standing account of anthropogenic effects, a scroll of all our human sins against nature.
Fossil fuels compete with the Bomb, which flooded the world with Carbon-14. 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 it only works for people born after 1960. For people born in the 50s, it gets tricky because their dentition formed during a time of great flux in radiocarbon levels: BOOM, C14 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.
The Bomb Effect.
When I lived in Utah, I thought of the Bomb Effect and the Seuss Effect as the war between Time and No Time and Utah was the battlefield. From Downwinders to oil refineries & tar sands.
The trees are dead. We wound their doomsday clocks.
tick tick tick
Westside Rising Flood Memorial in Time Check, Cedar Rapids: steel sculpture of the outlines of eight houses; two are tipped over, while the two tallest ones have blue clocks set to 10:15; a felled evergreen torpedoes through one of the tipped over houses
By the time the sirens went off on the day of the derecho, it was too late to prepare.
My husband and I watched from our windows as wind stripped branches off a walnut tree, easy as blowing a dandelion poof. I cried as our recycle bin rolled toward my baby rose bushes and stomped out the blooms like an AT-AT. A neighbor’s tree collapsed and smashed through the roof of a garage. Another neighbor’s siding and shingles flew off like Frisbies. Our wooden fence posts snapped.
“That’s not a tornado sky,” I said, trying to make sense of it. But the wind whistled like one, that familiar freight-train-rolling-right-over-you sound we all know means take cover. We never imagined a hurricane. Iowa doesn’t get hurricanes.
Forty minutes later, when the winds died down, the neighborhood emerged from our front doors — no masks, no social distancing — into new alien terrain. All our beloved old growth trees were gone.
“A tornado touched down on our street in the 70’s,” a neighbor told me, “and it was nothing compared to this.”
Later, when our street was clear, we ventured out to see the rest of the city. All over town, this was the scene:
large evergreen trunk resting atop a car in the road that it has smashed
At Oak Hill Cemetery, a tree that has stood since at least 1912 when Walter Douglas died aboard the Titanic got knocked over by the root ball:
white stone mausoleum with “Douglas” carved over an arched doorway, and a large rootball and felled tree next to it
Near Bever Park:
a modernist style house with a tree toppled over in the front easement, its entire root ball coming up with it
another view of the above tree that came down by the root ball, facing the sawed end of the trunk and looking down the sidewalk at the damaged portion with uplifted slabs of concrete
a closer up view of the above image, looking at the slab of earth that came up with the root ball and the sidewalk concrete slabs that came up as well
side view of above tree, showing the rootball and the overturned slab of sidewalk it brought up with it
very close up behind where the sidewalk has been flipped over, showing green rebar bent into what looks like a notebook spiral
I didn’t know trees could do that.
The force was so strong it flipped the sidewalk over with it, blocking the path of disabled people & seniors: Look at the force! It bent the rebar in the concrete as easy as flipping a page in a spiral notebook.
As an epileptic who cannot drive, who pops rollator wheelies over busted-up sidewalk slabs and curbs with no curb cuts, it hurts to see sidewalks destroyed. I grew up here, an epileptic kid in Car City, city of missing sidewalks, city of buses that don’t run past sundown, city of no buses on Sundays. I walked the shoulders of busy roads. I walked the railroad tracks alone in the dark. Cedar Rapids was so inaccessible that in 2015, the Department of Justice warned: Comply with the Americans with Disabilities Act–or else.
Complete Streets, the city called their new sidewalk plan, confessing they had not been complete before. And yet, in the criteria, “neighborhood acceptance”:
Flowchart for “base of implementation” showing Neighborhood Acceptance and Construction Obstruction as the two main paths
May 27, 2016, Cedar Rapids Gazette:
Gazette headline that reads: Sidewalk expansion plans continue to get pushback in Cedar Rapids, with a photo that says “STOP SIDEWALKS/WALLS SAVE OUR TREES”
“I don’t like sidewalks,” 94-year-old Ida Pratt said. “We don’t need them. Nobody even walks here.”
Nobody even walks here.
I used to get angry at the “STOP SIDEWALKS/SAVE OUR TREES” signs. Were disabled people worth less than trees? Now, I am not sure what to make of them.
After derecho, a man walked up while I was taking photos and asked if I was publishing them. I told him about The Log Project my husband and I are doing, collecting logs from places of personal or historical significance to saw slabs & create a wooden codex, like an ancient book.
“We knew that tree was going to fall,” he said, pointing at the rootball that flipped a whole sidewalk slab. “It was only a matter of time. When the city put the sidewalk in, they cut up the roots, made it weak. Another one just like it toppled in a snowstorm. This one fell so easy, it didn’t even make a sound.”
He looked sad, maybe resigned, and I realized the protest signs — at least some of them — were sincere. I had always believed the slogan fake, cooked up to make anti-sidewalkers look like environmentalists.
But did the sidewalk kill the trees or the storm?
“I got a log from my childhood home in Hiawatha. A tree I used to climb.” You would never know she was born with a broken hip, my father used to say. She can climb right over the tops of trees.
“Where in Hiawatha? I was a postman for 20 years and it was on my route.”
I told him the street.
“What name?”
“Higgins.”
He rattled off the address without pause, even though my parents moved seventeen years ago.
Then he rattled off the addresses of everyone else on the street who is still there.
We are all connected.
But without the sidewalk, how do we connect?
Evidence of Pedestrian Use with criteria listed: – actual “dirt path” on the ground evidence -observed use – direct requests to city staff – survey responses to areas of pedestrian use, with photo of dirt walking path forged into an easement by pedestrians
Evidence of my use. Tracked like some wild thing.
What evidence would I leave now? I cannot walk on uneven ground.
If an epileptic walks on the shoulder and nobody sees them, is there still evidence of pedestrian use?
Missing sidewalks, in red:
map of Cedar Rapids highlighting missing sidewalks in red and a large portion of the city is red
Car People think people like me are a Russian plot:
tweet by Gazette reporter Brian Morelli dated May 23 2017: “This meeting has it all. Commenter accuses city staff of being “Russian” for proposing sidewalks to a park in their neighborhood.”
City Council Meeting June 2017, resident Joe Day:
We don’t walk down the street. We drive.
It has no purpose whatsoever, other than Russian logic that because we (did road work on) Bever Avenue, ‘Ve vill have sidewalks whether you like it or not.’ [mocking a Russian accent] “Well, we don’t like it. It has no purpose.
Sidewalks voted down.
Then-Mayor Ron Corbett:
…[W]e can’t treat policies as if they are the Ten Commandments written in stone coming down from the mountaintop.
And yet, people are treating the derecho as an act of God, as if we didn’t blow our own houses down with climate change.
The city is piling up the felled trees in Time Check, a working-class & poor neighborhood that got decimated in another climate change disaster: the 2008 flood.
white house with boarded windows and door, and the words “Home Deceased Home” painted in blue spray paint on the front, taken in 2011 while visiting my mother’s childhood neighborhood
Home after home, declared uninhabitable and demolished:
Gazette headline that says 286 ore flood damaged homes to come down and a long list of addresses for those homes
One of those houses on G Avenue: my mother’s childhood home. When we visited in 2011, she led us to the lot where it used to stand. She pointed to all the other empty lots where people she loved used to live. After derecho, I got a log from a tree her twin brother used to climb to sneak onto the rooftop.
In 2018, for the ten-year anniversary, the city erected the West Side Rising flood memorial, featuring steel silhouettes of ghost houses, representing all the lost homes in Time Check. Some stand tall, some are tipped as if flowing away in a current. Atop the tallest houses: blue clocks, a nod to the blue porch lights neighbors lit to signify, “I’m still here.”
Except instead of porch lights they are clocks, permanently set to 10:15, the moment the river crested on June 13, 2008 and washed the neighborhood away: tick tick tick—-the end of time
The neighborhood is never coming back. It’s a designated flood plain now: the memorial will go under again and again and again, the Cedar River flowing through the open houses.
Westside Rising Flood memorial, pictured in 2018 before the storm. Steel outlines of houses, with a few tipped over, and the two tallest ones have blue clocks set to 10:15. There are evergreens and deciduous trees all around it.
Derecho blew an evergreen right through one of the houses. Two disasters, intersecting.
It came up by the rootball, too: uprooted, like the people of Time Check:
Westside Rising Flood memorial, pictured in 2020 after derecho. Steel outlines of houses, with a few tipped over, and the two tallest ones have blue clocks set to 10:15. Most of the trees are gone, and the evergreen from the previous photo has fallen and crashed through one of the tipped over house sillhouettes.
a close up of the evergreen that has crashed through one of the tipped over house silhouettes on Westside Rising Flood Memorial
Time Check, so named because railroads paid workers with post-dated checks that banks cashed on credit. The neighborhood lived on borrowed time.
Iowa City Press Citizen headline: Climate change prompts inland cities to raise bridges, with a photo of a bridge in Des Moines
After the 2008 flood, city officials started brainstorming ways to avoid another traffic nightmare. — Dora Miller, Channel 2 Cedar Rapids
During the 2008 floods, I-380 was the only option. Newspaper photos look apocalyptic: a city with a flooded coal-fired electrical plant, no electricity, no lights, all its bridges underwater; Mays Island on which City Hall and the Linn County Jail float, abandoned, drowned, not one human to be found; towers rising out of the dark waters, windows inscrutable.
This is the way the world ends, not with a bomb, but a flood.
And yet, cloaked in that darkness: cars creeping across the I-380 bridges, their headlights the only illumination. 15,000 cars a day cross the 8th Avenue bridge alone: raise it ten feet, and it will be like God never sent the floods at all.
“Downtown is going to be operating as normal versus in 2008 you know it was closed so we need that transportation element preserved,” said Richard Davis, Cedar Rapids Flood Control Manager.
Bridge as Tower of Babel.
Even as ADM loads coal into its burners to process the corn to make the ethanol that quickens global warming. The same coal banned from Prairie Creek Generating Station starting 2025.
We can’t treat policies as if they are the Ten Commandments.
A wave-shaped wall on the Flood memorial that marks the high water mark in 2008 is facing a wave-shaped pile of wood chips from tree debris after derecho.
This is the end of the road. We have to pick a direction. What will it be?
A tractor lifts wood debris in Time Check, while wood chippers process it, producing a dust cloud. In front of it, there is a sign indicating you must turn right or left; the road ends
One day, while my spouse was out filming trucks hauling tree debris into Time Check, a woman whose house survived the flood came out to ask if he was one of the workers. “No,” he said, explaining how we are artists documenting the storm.
She told him how the workers kept dumping logs in her yard and knocking down her electrical line, how her little girl used to swing in the tree that uprooted and fell in her own yard. “Everybody called us The House With the Girl in the Swing.” Now there is no tree to swing on and no neighbors to see it. Just a sea of logs and branches and wood chips in the empty lots where all her friends and neighbors used to light their porches.
“Why don’t they dump them out in Czech Village where there aren’t any houses?” She said. “Everybody else gets to heal, but not us.”
a creepy, deep red sun sets behind a pile of branches and logs on my street
The other night, when a blood red sun set behind the piles of debris on our street, I thought about how smoke from the fires out west where I used to live had given us this apocalyptic scene. Two disasters intersecting again.
The time is out of joint.
When trees burn, old tetraethyl lead emissions seep out. The trees become cars.
In 2010, Kinglsey O. Odigie and A. Ruddell Flegal leached lead from ashes of 2009 Jesusita Fire in Santa Barbara County, California, using nitric acid. Lead inside the ash “ranged from 4.3 to 51” micrograms per gram. They mapped the isotopic ratios down to fractions of degrees of latitude and longitude and dated them based on tetraethyl sources and the industrial history of the area.
Lead contains a kind of DNA: its isotopic composition, the ratio of 206Pb to 207Pb. You can trace it to the parent soil, like a genetic genealogist:
Australia: 1.037
Canada: 1.064
Mexico: 1.192
Peru: 1.2
Missouri: 1.28-1.33
In the 1960s, the United States imported lead ores from Australia, Canada, Mexico, and Peru, and the lead deposits in the Santa Barbara Basin reflect that timeline. In 1976, production bumped up in Missouri, and there it is in the fire ash, too: the trees are keeping records. We are not getting out of this.
We are breathing the air of long-dead cars on fire, and so are the trees. How jumbled will the timelines be inside the tree rings of 2020?
a creepy, deep red sun sets behind a pile of branches and logs on my street
This week, our smoky air tasted like the pollution in Salt Lake City, when inversions would trap emissions from oil refineries, cars, mining, and medical waste incineration in the valley for weeks or months:
flyer from the Utah Department of Air Quality showing the valley at three different times, progressively more polluted to the point you cannot see the city or mountains–as if the city has sunk into a pollution sea
When I lived in Utah, I used to post screen grabs of the Air Quality Index every day to Facebook. “You’re exaggerating,” people used to comment.
Or: “Why don’t you just leave?”
Now, my social media feed is flooded with screen grabs of AQI.
We are all canaries in the coal mine. We are all connected.
Air flowing clockwise around high-pressure systems pressing down on the Great Basin — my beloved Utah — give birth to the Santa Ana Winds that fan the flames of wildfires in California. Clockwise, trying to set time right.
All canaries. All connected.
As I watched the red sun set in the sky, I remembered a man sitting on his porch in Time Check next to Westside Rising, how he said he survived by the grace of good flood insurance back then. He was able to rebuild.
He didn’t want to leave Time Check, just like I didn’t want to leave Salt Lake City.
But now, surrounded by that sea of tree debris? “If someone tosses a cigarette and lights it on fire,” he said. “No fireman is coming.”
Harvard University owns a book bound in skin excoriated from the back of a woman who died institutionalized for mental illness.
She did not consent for this man to slice the skin off her back. He just took it, because he was a doctor and he could: perhaps the most literal expression of how disabled bodies are not allowed boundaries.
Skin is what makes a body a body.
There are three qualities that separate life from non-life, according to Astrobiology Magazine.
Quality #1: An “identity,” a body with a boundary between it and the world, to form a “bag of chemicals.”
Without skin, we have no boundaries; without skin, the proteins and gases and enzymes and blood inside of us have no bag to contain them. Without skin, we have no identity.
And a doctor, in a final act of violence, took this patient’s only boundary between her body and the world. He took her identity.
All we know is she died of apoplexy. We do not know her name, for the good doctor never thought to record it.
No skin off his back.
Sometime in the mid-1880s, when his friend Arsène Houssaye wrote Des Destinees de l’Ame — The Destiny of the Soul — and gave him a copy, he bound this book in his patient’s skin and wrote this note inside (translated from the French):
“This book is bound in human skin parchment on which no ornament has been stamped to preserve its elegance. By looking carefully you easily distinguish the pores of the skin. A book about the human soul deserved to have a human covering: I had kept this piece of human skin taken from the back of a woman. It is interesting to see the different aspects that change this skin according to the method of preparation to which it is subjected. Compare for example with the small volume I have in my library, Sever. Pinaeus de Virginitatis notis which is also bound in human skin but tanned with sumac.”
He fetishized her skin, gazed at its pores, thought it “elegant.” It raises questions, for me, of what other boundaries he might have crossed, before her death.
In fact, this doctor bound that other book he mentioned in (it seems) the same patient’s skin: De integritatis et corruptionis virginum notis, a tome containing detailed descriptions of the hymen & how to examine it for signs of lost virginity. Inside, he wrote, “This curious little book on virginity, which seemed to me to deserve a binding in keeping with its subject matter, is bound with a piece of woman’s skin that I tanned myself with some sumac.”
Disabled people suffer much higher rates of sexual violence: our bodies are not allowed the same boundaries.
Des Destinees de l’Ame:
From Harvard’s library: image of the book bound with human skin.
Notice I have not named the doctor. It is intentional. He who commits an unspeakable offense shall remain unspoken.
To prove a book is bound in human skin, you can’t just perform DNA analysis: so many hands have touched it, it could be contaminated. Maybe it’s goat skin but your test comes back with touch DNA from a random library patron. Maybe the good doctor had his mitts all over the body, and then the book. You could study the pores and hair patterns to differentiate from animal vellum or parchment, but it’s too subjective. Instead, you have to analyze the collagen peptides.
Microscopic samples were taken from various locations on the binding, and were analyzed by peptide mass fingerprinting, which identifies proteins to create a “peptide mass fingerprint” (PMF) allowing analysts to identify the source.
“The PMF from Des destinées de l’ame matched the human reference, and clearly eliminated other common parchment sources, such as sheep, cattle and goat. However, although the PMF was consistent with human, other closely related primates, such as the great apes and gibbons, could not be eliminated because of the lack of necessary references.”
This woman is reduced down to collagen, connective tissue. Her skin contains a body that is not hers, a story she did not write. Does she agree with Arsène Houssaye’s philosophy of the soul after death? For that is now her genetic code, the letters that make up her body, her anatomy, her organs.
This is violence.
Excoriate, verb:
1.
FORMAL
censure or criticize severely.
“the papers that had been excoriating him were now lauding him”
2.
MEDICINE
damage or remove part of the surface of (the skin).
Censure, remove skin: for this doctor, there was no difference.
Censure, verb:
express severe disapproval of (someone or something), especially in a formal statement.
Is a book about the soul after death a formal statement?
Think of William Corder, who upon his murder conviction was sentenced to hanging and dissection by doctors, who excoriated skin to bind a book detailing his murder case: the book that censured him for all eternity.
His skin now contained his corpus delicti. It was all he was. There was not supposed to be a question for him of the soul after death. Just this: his crime, his confession, his hanging, for all eternity.
We call the practice of binding books in human skin anthropodermic biblioplegy.
I got it in Deseret Alphabet: the alphabet of the Mormons, of Utah, of testimony. When I got that tattoo, all I had was the police transcript of that phone call–no audio. Deseret Alphabet was my way of making my brother speak his confession.
Speak it from my skin, through my skin: living vellum.
Karrie lying on the Salt Flats with her left arm extended to reveal the tattoo that reads, “I am trying to get as honest as I can” in Deseret Alphabet. Her head is turned to the right, and her hair is covering her face.
I touch my left hand to my right shoulder, where my Salt Lake Temple doorknob tattoo just finished healing. In a couple of days, I get a rose on the opposite shoulder, just like my brother’s. I’m not getting it in memory of him, but to steal the memory of him getting it. I’ve been stealing his memories: talking to his childhood and high school friends, searching for photos, watching vintage Pontiac GTO ads, mastering the Parachute Landing Fall.
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.
While I was getting the tattoo, people asked me what language it is and what it says.
“I’m going to be explaining it for the rest of my life,” I said to my tattoo artist, and he nodded.
Gives a whole new meaning to life sentence, I thought.
With my brother’s words branded into my arm, I will forever be giving him voice. I will forever be translating this secret alphabet. I will forever be moving my brother from one condition to another.
Maybe it’s a kind of redemption. Maybe it’s a kind of justice.
Anthropodermic biblioplegy uses a dead person’s skin to bind a text, but I am using living skin to bind a text to my body.
Except skin, being what it is, is both alive and dead: on the surface of the stratum corneum, dead cells. These are the cells you exfoliate to look fresh and young and alive.
The body makes tattoos permanent to protect you in life and obliterates them to protect you in death.
In a way, my project to confess for my brother is not all that different from the murderer’s skin binding a book of his own corpus delicti: it, too, is kind of an epigenetic text of sorts, rewriting the story of a body, giving it a new genetics. What’s different is I chose it. It’s my body, my text, my Mutus Liber.
A doctor did not excoriate skin off my back. And my confession is intended to save a soul, not condemn it: this is the real destiny of the soul, the ones we write ourselves.
Just got an art history paper of mine up on the site, here.
Nancy Davenport, 747 (image description in alt-txt)
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:
slice of a tree showing the rings, which I have illuminated with my homemade gold ink –a conceptual piece for #Inktober about accumulation of pollution in tree rings near copper mining & smelting operations, something I’ve worked magic with in my book, based on my experiences in SLC
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:
Iron gall on parchment: “What would I forge if I would never get caught?” This was posted also on my Facebook at the time and became … a topic!
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:
Valentine with a girl in a car and a policeman stopping her. Text creepily says Police Don’t Stop!
If you tell on me, you tell on yourself. – Greg
Valentine card with four panels: How to keep busy when you’re alone and miss me → over; How to keep busy when you’re alone and miss me, with illustration of two children facing each other on an orange background → “you liked it like a big girl” written in Greg’s handwriting and signed, Greg, then one more panel of How to keep busy when you’re alone and miss me →
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.
penmanship practice page by Karrie from elementary school. She has written capital & lowercase G & Capital H; the teacher circled some exemplars in red
“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:
Parents of the kids in schools where it was taught doodled in an effort to duplicate the printing-like movements and wished they’d had Palmer method, too. Fame of the system spread far & wide until the Palmer Method and Cedar Rapids and the CR Business College were all mentioned in the same breath.
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”:
Meanwhile, the A.N. Palmer Co. and Pace Graphics, now of Schaumburg, Ill, produce Palmer Method textbooks today. And since 1970, the Palmer method has been used in Cedar Rapids schools.
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:
Did you learn in grade school to write the Palmer Method? Did you know that its creator, Austin N. Palmer, was a Cedar Rapids man? Do you realize that Palmer Method is still widely used?
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.
Original:
Young Karrie’s signature on a worksheet, with no personalization.
Decorated:
Young Karrie signature with many flourishes, including loops that encircle both 1st & last name like lassos extending from the final letters.
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.
Gregory Dale Higgins signed in Palmer cursive, above his typed name, pleading “not guilty”
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:
notebook page with my handwriting; words are scattered all over and mostly illegible
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.
combined scans of two forms on which Greg listed his offenses at the time, which were “speeding”; the word appears four times and the lettering is different each time
Or how about this? My brother bubble-dotted his i’s when he was eighteen. Bubble dots!
Gregory Dale Higgins signature, age 18, on his Army enlistment form
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:
A page from a high school yearbook with senior signatures. Greg Higgins is there with dots on the i’s and a long loop extending downward from the S like a tail.
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.
My Asthma Abracadabra spell, for example, which was part of my PHD application portfolio in 2015:
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).
In SLC, I immersed myself in air pollution science.The more I studied air chemistry & pollution & forgery & disability & epigenetics the more I found the same chemicals implicated, over & over. Hofmann used ammonia in his forging; epileptic blood is high in ammonia post-seizure, and epileptics are often seen as liars … benzene in gasoline and medications … carbon and petrochemicals in pollution and inks. My inks & forgeries recreate ecosystems; they are living, breathing bodies.
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:
drawing of a spinal cord, vertebrae & brain with a tidal wave leaking from the back of the cervical spine and washing back toward the body, a gold-capped molar caught up in the wave; the spinal cord is drawn in black with gold illumination, the vertebrate in black with gold illumination over them, and the nerves, brain, and wave in ultramarine blue.
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.
Karrie stands with her t-shirt draped over her shoulder to reveal the rose tattoo on her left shoulder. The photo cuts off so you cannot see her face, only her lips, slightly parted. In the distance behind her is the Salt Lake Temple.
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.
x-ray of teeth showing molars with root canals. The teeth have extra roots that are also curly.
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)
To make my body un-dateable.
___
It’s strange, looking back at your work and seeing the seeds of things & how they grew: I was already thinking resurrection ink during at least 2013 when I wrote Strange Flowers, which published in 2014:
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.
my signature, Karrie Higgins, in black ink on dotted white paper
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.
several sheets of parchment of various sizes, with natural variation in shades, too, from ivory to light tan.
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:
Karrie’s right arm, extended to her side, with her elbow bent the wrong direction; she has a falcon tattoo visible on her inner bicep
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:
Crosswalk button with US Priority Mail label stuck to it that reads: JⒶWⒶLK! It’s a stupid fucking law, anyway.
Crosswalk sign with US Priority Mail label stuck to it that reads: OPRAH JⒶWⒶLKS (fuck the law)
Crosswalk pole with US Priority Mail sticker that reads: If God were real, he would JⒶWⒶLK!
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
flyer from the Utah Department of Air Quality showing the valley at three different times, progressively more polluted to the point you cannot see the city or mountains–as if the city has sunk into a pollution sea
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:
Facebook post from NBC News: Air Pollution Plagues Salt Lake City; comments posted: Oh NO!!! “GOD’S” — country — RUINED by “GOD’S” PEOPLE?!” LOL!!! Maybe it will wipe out all the Mormons. Oh just pray it away.
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.
We.
___
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.
Red, yellow & blue playground slides and jungle gym in front of the Hawthorne Air Monitoring Center
“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.
Bo’s hands with two round filters in the palm, each inside a plastic circle casing
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.
“No recycling?”
“No.”
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?”
___
Get out.
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.”
Get out.
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:
I have mixed feelings about this piece, and the related earlier piece about her brother which I just read. Here’s what I feel: she should simply be writing fiction. This purports to be essay as if strictly autobiographical but there are differences in the earlier story and this. In addition, much poetic license is taken. Its unlikely a routine extraction even with big and even deformed tooth roots would take three hours. An oral surgeon cuts a tooth when roots are in different planes. Even a difficult extraction doesn’t take three hours. And the likelihood the dentist or oral surgeon would, after some record breaking impossible three hour extra action, walk the tooth like an animal etc, is probably nill. That’s just one tiny example of why I have mixed feelings. This work is more like magical realism inspired by some real events but woven into a fictional and surreal landscape. So my mixed feelings come from using the shock value of a supposedly true first person narrative. I am not denying abyss happens including terrible abuse but this writer’s work reads more to me like a work of imagination based on some real experiences but turned into fiction. I call it fiction if its not simply fact. Its very interesting how she uses visuals to express some of the story. She’s very talented. My other critiques are not critiques, its just personal. She successfully blends pain with Eros. This seems honest but I feel the heebie jeebies when I read of erotic pleasure hinged to physical and emotional pain.
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:
me: Do you remember in Iowa City when I got some wisdom teeth extracted and it took hours for one tooth to come out? mom: Yes I remember that. Roots were wrapped around the bone. me: Alan remembers, too! And the dentist was so weird and called the tooth an elephant. It did look like one! Mom: yes, it was huge, too.
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 and Adam seated in a wheelchair made of bricks. Anna is poised on the armrest and Adam looks up at her.
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:
Twitter account: Paul Ryan’s Spine with an illustration of a backbone and Paul Ryan
Even Alt_NIH:
ALTNIH Twitter account using #spineless hashtag to refer to POTUS
I am a patient at NIH because of my spine. Imagine seeing that on a Twitter feed run by — who? Doctors there?
Scientists Baffled by McConnell and Ryan’s Ability to Stand Upright Without Spines by Andy Borowitz
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:
Anna March: I had a feeling it was ____he’s great. He’s TOUGH but he’s great. I’m sure he’ll get back to you soon. I think telling other agents you are in conversation with him will open some doors for you but I’d talk to at least 3 to get a feel. REALLY. Have you read the interview with [blacked out] they did a roundtable. it’s insightful. I’d reach out to some of his clients (current and former) and ask about him. “I’m talk to [blacke dout] in early stages, just wanted to know if you had any insights you’d be willing to share, 1005 confidentiallyBut 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.
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:
January 28, 2016: U.S. Department of Justice Civil Rights Division Disability Rights Section – NYA 950 Pennsylvania Avenue N.W. Washington, DC 20530 Re: Associates of Writers and Writing Programs Dear Ms. Higgins: This is in response to the complaint that you filed with this office alleging a possible violation of the Americans with Disabilities Act (ADA). After carefully reviewing the information that you provided, we have decided not to take any further action on your complaint. Unfortunately, because the Section receives thousands of ADA complaints each year, we do not have the resources to resolve all of them. It is important to note that the Justice Department has made no determination regarding the merits of your complaint or whether it could be redressed under the ADA or another .statute. Moreover, our decision not to take further action does not affect your right to pursue your complaint in another manner. You may wish to contact an attorney or legal service provider to determine what remedies may be available. In addition, a number of other options are available to you, including consulting state or local authorities or disability rights groups. Enclosed is a list of such organizations serving your area. These listings come from various sources, and our office cannot guarantee that the listings are current and accurate. We suggest that if you contact any of these organizations, you let them know that you have received this letter from us, so that they will not forward your complaint to our office. The text of the ADA, the Department’s regulations, and many technical assistance publications are provided on our ADA Home Page at http:/ http://www.ada.gov. If you have specific questions about Title II or Ill of the ADA, or want copies of technical assistance publications sent to you, you may call the ADA Information Line at 800-514-0301 (voice) or 800-514-0383 (TTY). We regret that we are unable to further assist you in this matter. Enclosures (These are just lists of Utah disability organizations since I lived there at the time)
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.
___
2017.
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.
Anna MarchSunday, July 30, 2017 at 8:27pm MDT i’d love it. Anna MarchSunday, July 30, 2017 at 8:27pm MDT we pay the second month after — meaning, june we pay aug 15, july we pay sept 15, etc. Anna MarchSunday, July 30, 2017 at 8:27pm MDT for more $ — 2x a month for $100? Anna MarchSunday, July 30, 2017 at 8:26pm MDT do you want to be writing for us more? Anna MarchTuesday, May 16, 2017 at 9:24pm MDT hi there — ok, when you have something, holler at me directly? (don’t submit through the regular channels, come to me, please? thanks! i’m glad to give you any kind of lift…………..i’m sorry things are, well, so hard. my ankle is meh. but ok. thank you for asking! my workload is hell. and so it goes. xoxoxo Karrie HigginsMonday, May 15, 2017 at 10:51pm MDT Hi Anna! I don’t at the moment, but I am working on some things. (Everything is in the dreaded “hot mess” stage-ha). Agggh so slow these days. Thank you so much for thinking of me! That actually kinda lifted me a bit and that’s no small thing. ❤️❤️How is your ankle? Anna MarchSunday, May 14, 2017 at 8:56pm MDT hi there — do you have any fiction you have any interest in publishing with roar? i have one spot available in our next 8 week block — and wanted to invite you…………thanks heaps for considering us. xo anna Anna MarchTuesday, January 10, 2017 at 10:51am MST karrie — shall we talk sometime next week? i’d love to get you to write a piece for roar at some point. thank you.
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:
Anna MarchSaturday, August 12, 2017 at 8:23am MDT also — you know, i tiink, i grew up in deaf culture/disability rights (my grandfather came out of deaf culutre (he has his own character sign in the hall of fame at galludent, working thre to take the deaf census before it was galludet as we knwo it know — he was prouder of that then even of us grandkids, of whom he was very proud, mom and aunt worked in deaf culture, grandfather was big part of fighting for the rehab act of 1973 and then mom was a lobbyist for various things in the wake of the rehab act of 1973, including the ada which was written by my next door neighbor, tony. and 843 other things in my childhood and then i worked in college full time tutoring physically disabled kids and then of course later was with adam for many years, who is a paraplegic, blah blah. 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. anyway — i’d LOVE IT if you’d write a piece about inability to be consistent and why and reaction to that. and if you do, i’ll maybe write a little intro to it or side bar or something? we’ve never done a sidebar, but seems like a good time to try. Anna MarchSaturday, August 12, 2017 at 8:16am MDT hi there -yeah, the “sue” thing was inane from her, i know. i love your blunt. how about this — when you want to write for us, reach out to me and we will work them in– “guest columnist” or “occasional columnist” or whatever. in fact, maybe your first piece could be about that — anna asked me to do this and here’s reality, kids.
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.
___
2018.
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?
I got it in Deseret Alphabet: the alphabet of the Mormons, of Utah, of testimony. When I got that tattoo, all I had was the police transcript of that phone call–no audio. Deseret Alphabet was my way of making my brother speak his confession.
Speak it from my skin, through my skin: living vellum.
Karrie lying on the Salt Flats with her left arm extended to reveal the tattoo that reads, “I am trying to get as honest as I can” in Deseret Alphabet. Her head is turned to the right, and her hair is covering her face.
Deseret Alphabet is phonetic. Translating my brother’s words into it felt like cosmic CPR, giving him the breath of life again.
Translate: verb
1. express the sense of (words or text) in another language.
2. move from one place or condition to another.
Deseret Alphabet is not a foreign language; it is English represented by unfamiliar symbols. I was interested in definition #2: move from one condition to another. I wanted to make the transcript of his incriminating telephone call speak. I wanted to turn it into testimony.
Even though I am not Mormon, I also needed the language to be of this place, Utah, because I truly believe I had to come here, I needed to come here, that it was some kind of destiny. This is the place that set me free.
I almost became Mormon, like one of my brothers, but instead, I forged my own path, my own relationship to the faith.
I am trying to get as honest as I can felt like something I could work with, something I could use to save my brother’s soul.
Bone black ink I made from my tooth: Eve donating a bone to her brother.
I went to the Salt Flats — salt crystals like fossils — and re-enacted Ezekiel in the Valley of the Dry Bones.
So I prophesied as I was commanded: and as I prophesied, there was a noise, and behold a shaking, and the bones came together, bone to his bone.
And when I beheld, lo, the sinews and the flesh came up upon them, and the skin covered them above: but there was no breath in them.
Karrie on the Bonneville Salt Flats holding up an unrolled scroll with I am trying to get as honest as I can written on it repeatedly in Deseret Alphabet.
There, I ate the scroll, ate his words. Let the word become flesh. Let my brother be resurrected.
But it wasn’t enough.
___
February 2015, forensic anthropology facility:
I am standing in a clearing surrounded by bodies under chicken wire cages, like the aftermath of a mass suicide. It’s a body farm, where forensic anthropologists examine decomposing bodies in hopes of gleaning knowledge to solve murders and identify victims. I came to study forensic art, specifically sculpting on skulls to reconstruct soft tissues that have long since decayed. I have no hope of working as a police artist; I want to understand resurrection as a physical process, something a human being can do, even when God refuses. I want to be my own Ezekiel–put the flesh back on the bones.
I step backward, almost stumble over one of the cages, and steady myself, leaning so close to the chicken wire I can poke a finger through and swab the buccal edge of a molar. The dead man looks just like my brother.
“This one still has hair,” a student says, peering over my shoulder. Everyone gathers around us. For a forensic artist, it’s an exciting find, the kind of detail that could identify a John or Jane Doe.
The dead man’s neck twists away from me, his jaw gaping, as if screaming from the torment of worms. The cage is the only thing between us. It has always been the only thing between us. My brother could never show me who he really was because of the specter of a cage; I could never see who he really was for the same reason. I never wanted him in prison.
I touch my left hand to my right shoulder, where my Salt Lake Temple doorknob tattoo just finished healing. In a couple of days, I get a rose on the opposite shoulder, just like my brother’s. I’m not getting it in memory of him, but to steal the memory of him getting it. I’ve been stealing his memories: talking to his childhood and high school friends, searching for photos, watching vintage Pontiac GTO ads, mastering the Parachute Landing Fall.
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.
If I donate my body here, I think, my face up close to the chicken wire cage, with all my brother’s epigenetic memories intact, with my rose tattoo intact, I could take my brother’s place in the cage. I could serve his time, save his soul. Maybe even fool God.
___
And here is how word becomes flesh: I made myself a body like my brother’s. The holes in my spinal cord, my syringomyelia, were never discovered until I got those tattoos. My brother had a spine like this: rods of titanium to hold it together after his vertebrae got crushed.
image from Greg’s VA records indicating severe spinal injury at the same location as my syrinx He had fusion from C5-6-7 and T1
When I saw the holes on my MRI, same vertebrae:
MRI image showing a silvery cavity in my cervical spinal cord.
I did not think: this could destroy me. I thought: this could save him. I was forging my body into his. The resurrection spell was working.
___
Three years ago, I wrote the Linn County Medical Examiner to ask if my brother’s tissue & blood samples had been preserved. I wanted his genome and epigenome sequenced. I knew I couldn’t afford it; I figured I would find a way somehow, someday. I asked if there were photographs. It was before I got the crime scene photos and saw the body for myself. I needed to see his body.
I asked about the remote midline scar referenced in the autopsy report — a scar I now know came from hernia repair surgery.
Most of all, I wanted to know if the Medical Examiner knew this:
Greg Higgins arraignment for sexual abuse in the 2nd degree of a child under 12.
and this, in a message from his ex-wife:
“I can tell you .. that on two different occasions I had found Greg in the same condition, in the same position. Once in our family room. And the other time in our hot tub building outdoors. That time I had to call an ambulance because he was unresponsive. It was in the wintertime, and when they finally got him on the gurney & outside where the air was cold, he started choking, sat straight up & said, “What’s going on?” He refused to let them take him to the hospital & had to sign a statement to that effect. I told him the next day I was going to call his doctor about the medications.
And (this is the first time he had ever “threatened” me) he shook his fist in my face and said “Don’t you dare. If you do, she’ll stop giving me the pain medications.”
“I know what I’m doing.”
and if it would or could change this:
autopsy report stating the morphine, methadone, diazapem, desmethyldiazapem, and gababpentin in my brother’s blood were not at toxic levels, but his coronary artery disease is mild and may not be clinically relevant. No cause of death.
Would you have ruled it suicide?
I hated that inkblot test of an autopsy finding, how you could see whatever you wanted to see, how it enabled the family lies. A heart attack, I was told, when I got the call in 2008, a couple days after his body was found. I never believed it.
The Medical Examiner wrote back:
Dear Ms. Higgins, I am in receipt of your letter regarding your brother Gregory Higgins. In response to your letter: 1. The information regarding sexual abuse would not change the findings of the autopsy 2. No, again that knowledge wouldn’t have affected the outcome of the autopsy 3. No photographs were taken 4. The tissues have been destroyed after 5 years 5. The remote midline scar I cannot tell you what this was as described. The autopsy findings were consistent with a death that occurred over a short period of time. If it were an OD then his lungs would have been congested and heavy and the tox screen would have indicated that. He most likely had an arrhythmia. His age puts him at risk for that. I hope this helps you. Sincerely, —— Chief Medical Examiner, Linn County
Arrhythmia: an abnormal electrical current surging through the switch-relay of the heart, making it thump thump thump off beat. I read the autopsy report again, my finger tracing down the center of the medical history like a scalpel, hunting for arrhythmia, but I never found it. You can’t diagnose arrhythmia on a dead heart. The Medical Examiner was asking me to take a leap of faith, to believe it was sheer, dumb luck that my brother died three days before standing in court as a jury heard him say on tape to his final victim:
“I want you to get your head squared on straight, but at the same time, I’ll be darned if I’m gonna be humiliated by some court of law.”
The Medical Examiner was asking me to believe that God granted my brother a writ of extraordinary relief. He was asking me to believe in a postmortem diagnosis without a body.
But wasn’t that the same thing I was asking of him?
It took three readings of the Medical Examiner’s email to see it, how he spoke of my brother in the present tense—his age puts him at risk for that—as if my brother were perched on an examination table, still alive, his heart still thump thump thumping.
There is another kind of autopsy, one that does not require a body, only tissue extracted from it: a molecular autopsy, capable of diagnosing genetic susceptibility to arrhythmias in cases of sudden deaths, particularly in the young.
Molecular autopsy saves the survivors: Family can seek testing and pre-emptive treatment.
Karrie sits on a couch covered in blue damask taffeta, wearing a long, flowing skirt printed with her C-Spine MRI. She is wearing a bubble gum pink wig and holds a pink stethoscope to her heart, listening to her own heartbeat. Next to her on the couch sits a bubble gum pink suitcase, unopened.
I think I think I think my brother died so that I may live.
But it was too late: All tissues have been destroyed after 5 years.
My tissues are still here, I thought. I can take my brother’s place on the autopsy table.
I tried to get a genetic test, but I couldn’t afford it. University of Utah owned the patent on the genes.
Utah.
The land of Deseret Alphabet kept the secrets of my heart, my brother’s heart.
But the VA didn’t. When my brother signed up for the Army, he signed his body over to Uncle Sam.
And Uncle Sam signed his medical records over to me:
EKG printout showing normal results for my brother on March 22, 2007
No arrhythmia.
I signed my body over to Uncle Sam, too: National Institutes of Health, a study of my syringomyelia. My term: five years. My marching orders: fly to Bethesda to report for duty on the anniversary of my brother’s autopsy: I was going to get down down down in the same position my brother’s body was found – the fetal position, the police called it – and let them open up the secrets of my neural tube with a needle, like an embryo in a petri dish.
A spinal tap.
I started to think of it as a living autopsy: me taking my brother’s place on the autopsy table.
Karrie in the fetal position, face down on a blue taffeta couch, with long, bubble-gum pink hair flowing over the cushions. She is wearing a long, flowing skirt printed with her c-spine MRI. Next to her head on the couch is a pink suitcase.
On the day I was scheduled to fly over Cedar Rapids, the waters of the Cedar River were cresting, predicted to be as as high as the 500-year-flood in 2008. Waters rising, just like they were around my brother as his trial date neared.
houseboats crashed into a railroad bridge across the Cedar River in 2008, photo by Cedar Rapids Gazette
In 2008, the same week the river crested and houseboats, untethered, slammed into the railroad bridge, the state filed pecuniary damages in my brother’s case: psychiatric bills for his victim.
My brother saw the river rising around him, and he went down down down
into fetal position floating in those fetid waters like a fetus in the amniotic sea.
After the heart monitor goes _____________________________________________________________________________, and doctors declare you dead, hundreds of genes flicker on like lightbulbs after an electrical blackout, delivering messenger RNA commands for cells to be fruitful, make proteins. Some genes reach peak activity days after a corpse is already cold.
Genes for inflammation, genes for stress, genes for immunity. The body thinks death is an infection it can beat.
Cancer genes go on a rampage–perhaps the reason transplanted livers so often succumb to tumors. What was believed to be recipient rejection might be an organ that still thinks it is dead.
Genes for embryonic development are reborn: the same code that wrote our bodies in the womb, long blotted out by the black ink of CH3–methylation–is revealed again, like original text on a palimpsest.
The DNA double helix unravels, opens our genes, unmasks our original blueprint. We are born again.
A possible reason for these increased abundances is that the postmortem physiological conditions resemble those of earlier developmental stages.
–Tracing the dynamics of gene transcripts after organismal death, Open Biology
the house Greg died in, Google map street view:
two story white house with a picket fence around the yard and a young child pushing a stroller in front of it at the far end of the right boundary of the yard
The first time I saw it, I thought they caught his death on camera. The child pushing his own carriage, at the edge of the lawn, front wheels just past the picket fence. They caught my brother’s ghost on camera.
But Google took that photo in 2012, not 2008. That child is alive, somewhere, ten years old maybe. That child is alive.
Death made my brother an innocent again.
police report for my brother’s death investigation, listing him as a victim
And death will uncoil my DNA, too, release all those forged memories, written in the black ink of methylation. God always wins.
___
NIH never did that lumbar puncture, and they delayed my first visit to November: the anniversary of my brother’s graduation from Jump School. Honors, top of his class, Iron Mike award. “The best of the best,” his Airborne buddy called him.
The morning after Trump won, I was lying in an MRI machine at the NIH Clinical Center in Bethesda, hypnotized by the clang clang clang, like the drumbeats when I marched in the streets my last time in DC. Two weeks after 9-11, anti-war protest, surrounded by riot police in Edward R. Murrow park.
I was fast back then, not like now with my walking cane. My group saw the opportunity, an unlocked door in a building on the perimeter, and we leapt through it like paratroopers out the airplane hatch. Cops chased us through the corridors, but we escaped to the Metro, to freedom.
My brother was alive then. He would have hated me protesting war. Airborne motto: Death From Above. And yet, he stopped abusing that other girl in September 2001.
[Did he stop abusing her because of 9-11? The shock of the war front coming home?]
___
MRI nightmare: President Trump shoving me in the MRI tube like a dead girl in a morgue drawer.
Greg’s best friend and Airborne buddy when I shared I was voting Hillary:
my old Facebook profile from when I “trumped myself” with the words Major Loser, Zero Credibility. My brother’s Airborne buddy commented, “Greg would kick your ass. Like Hillary has credibility. Everything Hillary has done has been a disaster and her husband is no better.”
___
When the CD arrived from the attorney and I played it for the first time, I waited for my tattoo line. I wanted to hear my brother be redeemed.
But what he said and how he said it are two different things.
“Honey, I did NOT … come, oh that’s crazy. Oh, my God, oh my God, I’m just sick. I can’t believe this shit. Oh my God. This is just, this is just bizarre. I just can’t believe this. I did not touch you sexually. I, if, if, you took that way, way wrong, my God. My dear, you, I’m trying to get as honest as I can with you, I mean, that’s way wrong. It’s just, tickling you or wrastling you or grabbing you. If that, if that’s what you thought I was doing, then that was just, that’s not right, I mean, I, that was not my intention whatsoever, my God.”
It’s a throwaway line, a nothing line. He rushes over it like it doesn’t matter at all. A lie.
Under that cage on the body farm, I will not be confessing; I will be manipulating, just like him.
And yet, I am translating those words to a new condition: speaking his lie every time a forensic anthropologist examines my decaying body for clues.
Maybe something from my body will solve a crime: my brother and I will get our day in court after all. That’s a kind of honesty.
I am trying to get as honest as I can with you, God.
___
Two weeks ago, I flew home from NIH again. July 12th: my brother’s birthday. It was not lost on me: I spent my brother’s birthday in an airplane, of all things.
Front page, Cedar Rapids Gazette, his last birthday alive on Earth:
July 12, 2008 front page of the Cedar Rapids Gazette with photos of May’s Island flooded & after the water retreated and the headline: Tide of Change
Back then, when the floodwaters retreated, city dump Mt. Trashmore, capped since 2006, was unsealed to entomb 430,000 tons of debris, including one soggy manila file from the basement of the Linn County Courthouse dated January 30, 1979, bearing my brother’s name and disposition: GUILTY. Misdemeanor Conviction, $100 fine.
Gazette newspaper clipping of Greg’s arrest for obscene phone calls. Cedar Rapids police Monday Night arrested Gregory D. Higgins of 96 Boca Chica, Hiawatha, on a charge of harassment. The charge was in connection with a northeast side woman’s reports that she received obscene phone calls since September. Higgins posted bond and was released.
His first sex crime. His genesis story.
Six years too late, I called the Linn County Clerk’s office to get the record. ”We lost a lot of records in the flood,” they said.
“And a lot of them we didn’t even try to recover.”
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).
Fig. 1 Incorrect sitting position for postural deformity and dorsal curvature cases. Scoliosis. Stooping, lopsided or humped over position. Work in this position is harmful. Lisa Oppenheim, 2017. Image is three young white women seated at a working table, bare backs facing the camera. One woman on the far right has an extreme curvature of her spine. Lisa Oppenheim has bisected the photo at that point with a straight white line.
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).
It is strange that Oppenheim did not see the humanity in the originals: Hine intended, in fact, to convey humanity. He took these photos with an eye toward social justice. His work contributed to the passage of child labor laws.
For her part, Oppenheim bisects the images with a white, straight line next to the curved back.
The original by Lewis Hine vs. the appropriated work by Lisa Oppenheim (Fig. 2):
Fig 2. Mildred Benjamin, 17 years old. Right dorsal curvature. Scoliosis. Right shoulder higher than left. Shows incorrect position required to perform this kind of work. Lewis Hine, 1917; Lisa Oppenheim 2016. Image: side by side of the original Lewis Hine photo of a 17-year old young white woman with her back exposed, seated at a desk working. There is a curvature in her spine that causes her left shoulder to droop. Oppenheim takes this photo and applies a white vertical line at the point of the spine.
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.
Fig. 3 Jacquard Weave (Apple Blossoms). Lisa Oppenheim, 2017. Jacquard woven cotton, mohair and linen textile in wood; blue background with flower print which breaks down into the color strands on the left side, unfinished, on the loom.
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).
Fig. 4 Parallel Stress. Karrie Higgins, 2016. Karrie straddles the end of a sidewalk and the rocky grass where it ends, standing in a pyramid shape with her legs. In her front hand, she holds a red cane that matches her long red hair. Her other hand drags a pink suitcase behind her.
I created it conversation with Parallel Stress by Dennis Oppenheim (Fig. 5):
Fig. 5 Parallel Stress, Dennis Oppenheim, 1970. Description: Man stretched in plank position between two breeze block walls, back severely arched as his body is stressed by balancing with his hands on one wall and feet an another. Black and white.
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).
Fig. 6 Karrie straddles the end of a sidewalk and the rocky grass where it ends, standing in a pyramid shape with her legs. The Prisma filter has rendered colors and lines into painterly strokes of bold red, dark green, and bright yellow.
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.
a sidewalk that abruptly ends, turning into grass and gravel. Text overlaid in all caps: YOUR KIND NOT WELCOME.
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:
rows of empty chairs in a gallery
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:
Twitter account: Paul Ryan’s Spine with an illustration of a backbone and Paul Ryan
Scientists Baffled by McConnell and Ryan’s Ability to Stand Upright Without Spines by Andy Borowitz
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:
email from the City of Lafayette: Hi Karrie –Just wanted to touch base with you as I’m sure you’ve noticed the completion of the sidewalk at Exempla Circle/South Public. We’ve also installed a new curb cut at that location, a pedestrian crosswalk, and a new curb cut at the bus stop directly across the street. Thank you for bringing this to our attention–we appreciate your help.
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:
text by Dodd: I have done everything that laid in my power to prevent the evils that have come upon me, and to avert the consequences of those evils I could not prevent, by endeavoring to transplant myself into a more genial soil; but all my exertions have proved fruitless. Wherever I turned for succour, wherever I looked for sympathy or kindly feeling, I was met by repulses, derision, and insult; and this because I was a factory cripple, and inspired to associate with those whom I considered in a more respectable sphere of life.
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).
Fig. 7 Karrie in the fetal position, face down on a blue taffeta couch, with long, bubble-gum pink hair flowing over the cushions. She is wearing a long, flowing skirt printed with her c-spine MRI. Next to her head on the couch is a pink suitcase.
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):
Fig 8 Karrie with light pink hair, topless in a long skirt printed with her brother’s police booking photo, a model backbone slung over her back and lit up with starlights. She is kneeling before her blue couch.
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).
Fig. 9 Les Menottes de Cuivre. Rene Magritte, 1931. A statue of Venus de milo, with the torso painted a light beige color, and the lower body wrapped in blue cloth. The sumps where her arms used to be are painted a dark black-red.
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.”
Dodd, William. A Narrative of the Experience and Sufferings of William Dodd a Factory Cripple. London, L. & G. Seeley, 1841.
Eisenhauer, Jennifer. “Just Looking and Staring Back: Challenging Ableism Through Disability Performance Art.” Studies in Art Education A Journal of Issues and Research, vol. 49, no.
1, 2007, pp. 7-22.
Gat, Orit. Lisa Oppenheim Unravels Haunting Images of Teenage Textile Workers. Vice. 15 September 2017.
Hine, Lewis. Mildred Benjamin, 17 years old. Right dorsal curvature. Scoliosis. Right shoulder higher than left. Shows incorrect position required to perform this kind of work. 1917,
Magritte, Rene. Les Menottes de Cuivre. 1931, patinated bronze.
Oppenheim, Lisa. Incorrect sitting position for postural deformity and dorsal curvature cases. Scoliosis. Stooping, lopsided or humped over position. Work in this position is harmful.
2017, dye sublimation print on aluminum, Tanya Bonakder Gallery, New York/Los Angeles.
Oppenheim, Lisa. Mildred Benjamin, 17 years old. Right dorsal curvature. Scoliosis. Right shoulder higher than left. Shows incorrect position required to perform this kind of work.
2016, dye sublimation print on aluminum, Tanya Bonakder Gallery, New York/Los Angeles.
Oppenheim, Lisa. Jacquard Weave (Apple Blossoms). 2017, Jacquard woven cotton, mohair and linen textile in wood, Tanya Bonakder Gallery, New York/Los Angeles.
Siebers, Tobin. “Disability Aesthetics.” Journal for Cultural and Religious Theory, vol. 7 no. 2, 2006, pp. 63-73.
vertebrae made of skeleton keys, a spinal cord, and a Master Lock brain, drawn in my homemade iron gall ink on a rich golden parchment paper
CW: abuse, CSA
My father is dying.
Every week, a new emergency: a stroke, pneumonia, sepsis, C. Diff. His lungs, filled with fluid, crackle through the stethoscope bell. His muscles are wasting. He falls a lot, shreds his skin clean down to bone. When my mother escapes the apartment to run errands, he speed-dials my sister, sometimes crying, sometimes ranting about our half-brother Scott, accusing him of getting a little too close to our mom.
My sister forwards me voicemails. We are building a case for Power of Attorney.
“Scott blew it, as far as I’m concerned,” Dad says in one, his speech slurred like all the times he drunk-dialed me after I went no contact in the mid 90s.
“He can go to hell from now on. I want nothing to do with him, ever … I’ll talk to an attorney. Well, I already–I already talked to one. Got the phone number, and he said, things can be done to expose these people … It’s important I talk to you. I sure wish to talk to you, sweetie. Please. Please call dad. Please, honey.”
click
“Please call. Please. This is your father. I need to talk to you. You and your mother mean the world to me. I love you. Please.”
I froze the first time I played one.
He sounds like my half-brother Greg on the taped police phone call, the one that got him arrested for sexual abuse:
Transcript: man, crying, “I don’t want your mom to hate me. This is my life. This is all I have.”
Five years after Greg’s body was found crouched face-to-carpet in front of his flickering television, I ran a postmortem criminal background check and discovered he died facing trial for Sexual Abuse in the 2nd Degree of a child under twelve: same crime he perpetrated against my sister & me.
I texted my mother.
How old was the victim? She replied.
I texted my sister.
How old was the victim? She replied.
What they meant was: Do we have corroboration?
We were conspiring in time-travel case law: If Greg touched a little girl in 2001, he did it in 1986, too. Future bad acts.
I scanned every page of the court case and emailed a copy to my mother.
“I got called a liar, too,” she said.
She meant by my father, after my sister had come forward in 1989 and my mother kicked Greg out of our lives. Dad always chose Greg.
Greg, his Airborne Paratrooper golden child. Greg, his first and favorite son from his first family, with his first wife.
I wanted to mail my father Greg’s case, certified with return receipt. I wanted that green postal service postcard with his signature on one side & my name and address on the other, like he was signing for me, signing you are mine.
green United States Postal Service certified mail postcard receipt
But I did not want to reconnect.
The last image I saw of my father for over twenty years: his half-toothless grin reflected in the rearview mirror of his car as he careened, drunk, down the driveway, laughing after I had screamed, Greg did it to me, too.
___
After my father got sepsis, when nobody thought he would make it through the night, my mother said, “Do you want to talk to him?”
I surprised myself and said yes.
I don’t know if he knew who I was. He asked about my nephew’s guitar and whether he would come play it. Maybe he thought I was my sister. Maybe he thought I was my nephew.
“I love you,” I said.
“I love you, too,” he said.
I was willing to let it all go: the black eyes and bruises he left on me, that time I had a skull fracture and who knows what the ER docs really thought:
x-ray imaging report noting a possible hairline fracture in my zygomatic arch, which was later confirmed
They declared a seizure did it, and maybe it did, but fists landed there, too, and it wasn’t always clear which injuries were abuse and which were my disabilities.
[Didn’t they count on not knowing for sure? Didn’t my father? Didn’t I?]
How he drove drunk with me in the backseat of the old Matador, swerving over the double yellow lines while my body got tossed around on the bubbled plastic seat liners. I used to pretend they were bubble wrap, that they would protect me if we crashed.
Karrie as a baby with a wet drooping diaper, looking a little distressed, and her father standing behind her, leaning on the brown Matador trunk with one hand and holding a Pabst Blue Ribbon beer in the other
All the times he peeled up my long patchwork skirts to reveal my panties and said, “I bet the boys like that.”
Or said I was draining the family dry because of my medical bills, that I never should have been born.
I was willing to let it all go. He sounded so frail, so weak. He couldn’t hurt me anymore.
___
But he did make it through the night.
And the next night.
And the next.
And a hospital social worker said, “He needs round-the-clock nursing home care.”
“You have to do it,” Scott told my mother, and my sister and I agreed. Our mother is in her seventies with health problems of her own. She can’t help my father up when he falls. She can’t help him in the bath. She can’t lift him into the car.
Finally, she got the paperwork for a Medicaid application. To meet the income caps, she will sacrifice my father’s social security. She will sacrifice his pension. Without that income, she will lose the apartment. Her home. Again.
Years ago, she sold the house after my father left her for his high school sweetheart, the one he’d been seeing since the mid-90s and maybe longer. It went for $75,000, furniture included, and she packed up a truck and moved to a cramped apartment across town, divorce papers drawn and ready to sign.
But they never signed the divorce papers. Instead, he came back, and they signed a lease. Now, they’re bound by poverty: no money to live apart.
___
My father gets wind of the Medicaid application, threatens my mother. “If you put me in a nursing home, I will divorce you.”
My sister and I laugh via text. Can you fucking believe him?
___
Voicemail to my sister:
“You do something like this” — he means the nursing home — “This is not helping anything. I’ve never hurt my wife–your mom–physically, but mentally I guess I did for … I don’t know why now. But I thought I would have time to make it up. I didn’t want that stroke, either. And this other thing that I caught”–he means the C. Diff — “they’ll get rid of it. It will clear. I need to talk to you honey. All right, sweetheart, I hope you take this, call me back.”
___
August 2011, my first time visiting home since 2000. My sister and I pose in front of our favorite childhood roller rink:
my sister and me in front of a white brick building with an old, decaying sign that reads SUPER SKATE in all caps black lettering. I am laughing so hard I am almost doubled over and my sister is looking at the wall behind her.
my sister and me in front of a white brick building with an old, decaying sign that reads SUPER SKATE in all caps black lettering. We each raise one arm in a victory pose.
What you don’t see: my father’s van speeding past, me running to my mother (I could still run then) in a panic. “Was that dad? Where is he going?”
My mother, admitting she invited him to my goodbye breakfast before I hit the road back home to Utah.
“I want one last picture of us all together,” she says.
I make her call him, tell him no. We sit in the Super Skate parking lot, staring out the windshield, Mom’s knuckles white on the steering wheel, until his van passes the opposite direction.
I wonder whether she wants the picture or dad does.
Later, he yells at my mother. “What would Karrie’s Grandma think if she knew my own daughter refused to see me?”
My mother yells back. “What would she think about why we don’t have a house?”
___
The night of my father’s stroke, I look at the Super Skate photos. “I should have let him come to breakfast,” I tell my husband. “I should have let mom get her photo.”
I was willing to let it all go.
___
And then we found out about the secret money, inherited from his brother in 2005, not long after the house got sold:
probate case summary for Luverne Barthe, with my father names as a brother & beneficiary
It wasn’t a normal inheritance. My uncle’s guardian — a half sister — invested his money while he was locked up in the Veteran’s Home, let it grow. She created their own birthright.
My aunt leaked the secret without knowing it was a secret. My mother called her about the nursing home and Medicaid application, and my aunt said, “What about the money from our brother?”
Every sibling got three disbursements, enough to buy a house in Cedar Rapids.
ledger of transactions from Luverne’s probate case showing three disbursements to Cliff Higgins, totaling $113,692.55
A house.
My mother lives on the edge: barely a few bucks after rent, Medicare supplemental insurance, prescription co-pays, her phone bill. “If we still had the house, we’d be comfortable,” she says. I know she regrets selling it. Back then, it seemed like her only option: get the hell out of that place of bad memories, get a little cash, try to pick up the pieces.
She needs a dental implant. She needs a new car. My father totaled her van three years ago and they never had the money to replace it.
The van. Oh god, the van. He bought her that van, used, when they got back together. He used to show it off all the time like an engagement ring.
“What do you bet he plunged some of that money into the van?” I text my sister.
“And then he wrecked it,” she texts back.
my dad’s ticket with $195 fine for Failure to Maintain Control
Of course he wrecked it.
___
Here we go again: I email my mother the probate case.
I tell her, “There’s the proof in black & white. He got that money.”
“I will never understand why he did it,” my mother says.
Because he never loved us, I want to say, but I don’t.
__
Ever since I left home, I have had trouble finding a home. I have lived all over: Iowa City, Portland, Salt Lake City, Boulder.
Of all the cities I have ever lived, I loved Salt Lake City the most because of the Mormons. I almost became a Mormon because I thought they know how to fix this.
The first time I visited Temple Square, I broke down in the visitor center in front of a row of miniature houses with television screens in the windows. Families can be together forever, the videos promised.
A pair of sister missionaries approached. I don’t think I understood yet that they were missionaries, even with the name tags. They directed me to the family history computers. I sat down, typed in Greg’s name, and it returned his social security number from the Social Security Death Index.
I could run a background check, I thought. I could learn things about him he never told me in life.
“Write it down,” one of the sister missionaries said, sliding a scrap paper toward me.
In 1960, the LDS Church blasted into a cliff in Little Cottonwood Canyon, drilling 700-foot long tunnels 675 feet below the surface and reinforcing them with concrete and steel. Ten-foot-tall steel cabinets line the corridors, relentless drawers like cells in a honeycomb, a card catalog of every human name the Mormons have harvested so far. Volunteers around the globe photograph birth certificates, baptism records, obituaries, marriage certificates — and more — on microfilm, delivering images to the hive, where archivists preserve them in perfect 55-degree temperatures and 35 percent humidity. Entrance tunnels lend the only hint of unnatural activity, like a secret alien laboratory or B-movie beehive.
Nobody except authorized personnel gets past the 14-ton Mosler doors — built to withstand nuclear apocalypse. Once a document goes in, it never comes out. The archive shuns tours and forbids researchers access to the originals. The security of the records trumps all else: The simple swishing of pant legs kicks up enough fugitive denim dust to obliterate a record.
Not even the Salt Lake City temple is so secure. When the Wasatch Fault ruptures, the earthquake will liquefy the clay and sand beneath the temple. It will fall. The LDS world headquarters will fall. The holy city of the saints will crumble, but the vault will live on, cocooned like a time capsule, impervious as an escape pod to the problems of man.
photo: LDS Church
These are the records that allow Mormons to baptize the dead, save the souls of their ancestors, and seal families together for all eternity.
In 1836, the Prophet Elijah appeared to Joseph Smith in the Kirtland temple. He said that the hearts of the children must turn toward the fathers. He meant the ancestors. And so Mormons seal up the records, and seal families. Nobody ever goes astray.
Families can be together forever if the hearts of children turn toward the fathers.
___
In 2008, when Greg died, I got written out of the obituary. One day later, a corrected obit appeared:
excerpts from the two obituaries side by side with the list of surviving family; the first one does not include Karrie, while the second one does
I got written back into the family line, but only kind of. Carrie with a C, not a K. How does your family not know how to spell your name?
I never knew which family member called in the correction until I found out Scott is a Mormon–converted via shotgun if he wanted to marry the love of his life. But even still: converted.
Scott, the peacemaker. Scott, the negotiator of treaties when our family was at war. Scott, the one who will never erase you from the family line.
How do you not know your own brother is Mormon?
Scott broke me into Granite Mountain. Scott wanted us to be together forever.
Is this family?
___
“If Dad spent that money on anyone, he spent it on Greg,” my sister says, but I don’t know.
June 1977, Army infirmary:
scan from Greg’s Army infirmary chart, dated June 21, 1977 with the note: Parents killed in car accident Apr 77
“Parents killed in car accident April 1977.” But our father is still alive, and Greg’s mother didn’t die until 2004.
Greg dreamed our father dead.
Like brother like sister.
February 8 1990, two days after 15 candles on my birthday cake and four months until I tried to commit suicide:
Cedar Rapids Gazette headline: 23 vehicles pile up in fog; 18-year-old dies; police can’t say if ADM is a factor
Cedar Rapids Gazette newspaper photo of a car slid under the back end of a school bus, the top of the car crushed. Police stand to the side.
“It’s hard to tell if it’s the fog, but it was different there,” one of the drivers said. He meant on Highway 30 near ADM Corn Sweeteners, same road my father drove every day to work maintenance at the ethanol plant.
One minute: clear skies. The next: fog so thick a school bus driver slowed his bus to a creep. Behind it: 17-year-old Lynn Jones, “the best of the best,” the principal of Prairie High School called him, an Eagle Scout, a swing choir boy, a “quiet leader.” He slammed the brakes too late, slid right under the bus.
The ethanol plant is eating cars.
January 22, 1988:
Cedar Rapids Gazette newspaper photo of a car crashed into a semi truck with the headline “Steam cloud blamed in fatal crash”
Cedar Rapids Gazette: Friday’s dense steam cloud provided drivers with a terrifying few seconds of driving. The highway simply disappeared.
Maury Burr of the Iowa Department of Transportation: “You drive into them and it’s lights out.”
February 2, 1988:
Cedar Rapids Gazette newspaper photo of person on a stretcher and fire & police officers after an accident. Headline reads: Steam cloud may force road closings. Zero visibility near ADM blamed for second accident
Sometimes, I imagined Dad’s pickup disappearing into the fog on Highway 30, too. Father killed in a car accident, 1990.
__
After I ran that postmortem background check, I found Greg’s widow on Facebook. I didn’t know if she believed Greg or his victim, but I took a gamble. I wrote, I am Greg’s youngest sister, and he did it to me, too. You are not alone.
We talked on the phone. She said, “Your dad used to come into our home and insult Greg’s mother.”
“I don’t know how to tell you this about your dad,” she said., “But —
dotted notepad paper with “He had a girlfriend in Strawberry Point” written in my handwriting and traced over multiple times
I wrote down the words, traced them over and over as she talked. He had a girlfriend in Strawberry Point.
___
We knew about the girlfriend. We always knew.
Eight years old: I answer the plastic Garfield phone, tell the strange woman asking for my father that he isn’t home and “May I ask who is calling?”
“This is his wife,” she says, in a menthol voice.
“But you’re not Mom. Mom is his wife.”
___
In my medical records: my father’s social security number. I could run a background check. Find out things he never told me.
___
Mom finds a nursing home bed for Dad. “We can’t put him in the nicer one because they want a $3,000 deposit,” she says.
I research the cheaper nursing home, the one for poor people:
screen grab of ratings for a nursing home: poor ratings for health inspects, staffing, & medical care quality measures; fines of $8698 in the past two years
“We’ll have to be vigilant about abuse,” my sister says.
I picture my dad’s red catheter tubes curled on a shelf in the bathroom when I was a kid. He’s had to use them all these years because his bladder is too elastic, too stretched out, to squeeze out urine. I get so sad for him I hurt there, like a UTI. It’s where I always hurt when I think about him too much.
He did it to himself. He could have used his secret money.
It doesn’t make it any better. I am relieved when he does not go.
“We can’t put him in a nursing home against his will,” the doctors say.
They are going to leave that to his children. Pursue Power of Attorney, they advise us. It’s the only way.
___
Excerpt from a social worker report during one of my extended hospital stays, St. Luke’s Hospital, 1990:
Mr. Higgins has a lot of problems from his childhood because he is bitter for having to work at such a young age. His siblings got better treatment because the family situation did improve. Mr Clifford joined the Navy and received his high school diploma during his military time.
When I was 13 or 14, I got a job detasseling corn. They recruited us at school, handing out the applications, and luring us in with the promise of good money we could spend however we wanted. We didn’t even have to get a ride. Buses would pick us up and transport us to the fields.
My father tried to stop me: No daughter of mine will get dirty in the corn fields.
I did it, anyway. Spent the money on my own school clothes and supplies. I thought if I bought them myself, he couldn’t yell at me anymore for costing him money.
That autumn, the falls started. The paresthesia. The seizures. Joint pain — there since childhood — intensified. I saw rheumatologists, orthopedists, neurologists. They tested me for arthritis, lupus, lumbar injuries, epilepsy, and Lyme.
Diagnosis: migraines and epilepsy, but it didn’t explain the pain or how my knees, shoulders, ankles, elbows and fingers slipped out of joint.
My father latched onto Lyme and refused to let go, even when blood tests came back negative:
Medical record scan: Father was extremely irritable and defensive. In one family therapy session we had during her hospitalization, father expressed his belief that all of Karrie’s symptoms were due to Lyme disease and the medical community had simply failed to recognize this.
The newspapers all that year:
newspaper headline: Entire Family Fights Lyme Disease
“A tick must have got her when she out there detasseling,” my father said. He found a way to blame that job, to blame me.
But I never got bit by a tick.
“Your medical bills are draining us dry,” he said. “I wish you were never born.”
No daughter of mine will get dirty in the corn fields.
___
But it wasn’t just that job. It was any job.
Kool Moo ice cream stand, Cedar Rapids, 1992: My father skids into the parking lot, marches up to the counter reeking of Pabst Blue Ribbon, and demands I clock out and come with him. “I am not coming back for you later,” he says. I cannot drive because of my epilepsy, and he knows the buses do not come to our house in Hiawatha.
“Go ahead,” my boss says, his eyes fixed on my father’s, nodding like he might to a gunmen demanding cash out of the register.
Mr. Higgins has a lot of problems from his childhood because he is bitter for having to work at such a young age.
I see it now, how my father thought he was breaking some kind of cycle. He was never a child, so he would see to it I was always one.
I wish you were never born.
___
December 2017:
drawing in my homemade ink on parchment paper: side view of a backbone with vertebrae made of tiny, golden teeth outlined in black iron gall. The spinal cord, drawn in gold, disappears into the root of a giant, gold-capped molar that serves as the brain
At my epileptologist’s office, we discuss the possibility I was never born.
Periventricular heterotopia: newborn baby neurons never migrated from their birthplace inside the ventricles to create the cerebral cortex during fetal development. Instead, they clung to the shore of their primordial sea inside the neural tube, anchored for life in the swirling waters of cerebrospinal fluid.
I might be a fetus and adult at the same time.
Four years ago, I got diagnosed with a neural tube birth defect called Chiari Malformation, which means: my skull is too small for my brain. My cerebellum crowns through the foramen magnum like a baby through the cervix. My brain is trying to be born.
On MRI films, my neural tube is a scroll without a seal: my spinal cord slit right down the center, like with a letter opener. All the secrets of my fetal development unfurled. Inside that tube: cavities called syrinxes. Syringomyelia.
And from that loose scroll: crest cells that migrated to my brain and face to create connective tissue, grow teeth.
My teeth. Deformed, with extra roots that curl and twist in my gum tissue like sea anemone. I have a high, narrow palate crowding my molars so close their roots appear tangled on x-rays, like trees planted too close.
The brain gives birth to the body.
By now, my sister has been diagnosed with Ehlers Danlos Syndrome, a genetic connective tissue disorder that explains our joints sliding out of place, paresthesia, chronic pain, migraines, high dental arches and tooth decay, my Chiari-Syringomyelia, maybe even my epilepsy. That’s why we are talking about periventricular heterotopia.
“Your neurons migrate on lattices of connective tissue,” my neurologist tells me. “If you have a connective tissue disorder, maybe those lattices aren’t quite right.” Heterotopia means: out of place. Neurons out of place, in the wrong home, cause seizures.
All the things my father blamed on Lyme, on my detasseling job, on me, turn out to be genetic.
And they were passed down through him.
I know because of Greg. The Airborne paratrooper golden child. Paternal half-brother. I got his records from the VA, filled out the request as next of kin, sent the corrected obit to prove it:
Greg’s diagnosis of a bicep tendon rupture; the doctor notes that normally in someone 49 years old, a fair amount of force is involved in proximal tendon rupture, but he had no injury.
His records are full of tendon ruptures, hernias, migraines, pain, insomnia, joints out of place.
My father’s red catheter tubes, his stretched bladder; spontaneous pneumothorax in the 1980s, transported via ambulance from the ethanol plant to re-inflate his lung at the hospital; aortic root dilation; pain pain pain: all symptoms of EDS.
Not Lyme. Not my job getting dirty in the cornfields.
“See if you can get your brother Scott to go with you to the geneticist,” my neurologist says when I list off the family history. “Have them look at his joints, too. He may be the key.”
Scott, the peacemaker. Scott, who broke me into Granite Mountain. Scott, the Mormon. Scott, whose corrected obit unlocked Greg’s records. Scott, whose shoulders slide out of place, too.
Scott is my skeleton key.
___
On the phone, I tell Scott about Dad’s accusation: Scott is getting a little too close to Mom.
False accusations of incest from a father who never believed a real one. Greg did it to me, too. My father laughing, his half-toothless grin in the rearview mirror.
Scott tells me how he changes the oil in Mom’s van, helps with repairs around the house, helps when she can’t lift up my father from the floor.
How my father gets angry when he asks to speak to my mother on the phone.
“I never thought he was jealous,” he says. “I think of your mother as my mother now.”
This is what my father fears most: The hearts of children turn toward mothers.
I think, I will write you into the obit, too, when she dies. I will make sure you are listed as a surviving son. I will create your birthright like you created mine.
In Granite Mountain, a second obit will strengthen our connective tissue, bind us together forever.
____
At the cardiologist office, we discuss the possibility I was never born.
My echocardiogram gives me away: a patent foramen ovale, the hole in the heart of every human fetus, a secret passageway through the septum for blood to bypass the lungs. Fetal lungs are dormant. Unborn babies, floating in an amniotic sea, do not breathe. Their tiny hearts keep their blood a secret. Shhhhh, the lungs are not alive like we are yet.
When a baby breathes its first breath, the portal closes forever: no going back. Within a few months, it seals tight as a tomb. Except maybe mine never did. Maybe my lungs never trusted the air. Maybe my heart never trusted my lungs. My portal is still there, waiting, luring my blood back through time.
Inside the right atria: the Chiari Network, meshy strands leftover from embryonic development, named for Hans Chiari, the physician who discovered them during autopsies, same man who discovered my neural tube birth defect. Chiari is inside me everywhere. A through-line from heart to brain: Chiari, Chiari, Chiari.
Maybe EDS, too: it causes heart defects.
Or the hole could be an atrial septal defect–not a purposeful passageway, an accidental one, when the atrial tissue failed to finish forming.
Either way, my heart thinks I am still incubating. I do not yet exist.
Later, they find an aortic aneurysm, too: Something for old people, I think. How can I be old and never born at the same time?
EDS causes that, too: my conception will be my undoing.
“Does anyone in your family have heart defects?”
“My father,” I say.
The hearts of children turn toward the fathers, literally.
___
What about the hearts of fathers?
My father’s high school sweetheart left him money when she died last year.
Last year. They were still together, still in love. She had my father’s heart until the bitter end.
“Her children called him,” my sister says. “Asked him not to take it. They needed it for her burial.”
We have to find the kids, check the story. Medicaid demands a full accounting.
I search the obits for her first name; it’s all we have.
Judy + [town where she died]
One hit. Right year, right name, right location.
It could be my family:
Judy married a man named Clifford–same name as my father. She named her first daughter Denise.
Denise.
I freeze. Denise is my sister’s name.
I text my sister. She replies, “I am going to be sick. Mom always told me that Dad insisted on my name.”
“Let’s hope it’s the wrong Judy,” I text back, but we already know it is not.
___
I search the court database for her probate, find her divorce instead: 1997. The year Mom found out the first time. Dad promised to end it, but he never did.
But Judy did — with the other Clifford. The mirror Clifford.
___
We are not a real family. We are his pretend family.
I am glad I said no to that family photo. I am glad it doesn’t exist, because we don’t exist.
___
I start searching property records. Maybe Dad bought Judy a house. Maybe that other Denise — bizarro world Denise — is sitting in it right now. Maybe she is the real child, with the real inheritance. Maybe she just found out about secret money, too.
__
I dispatch my sister to our parents’ apartment. “Rifle through dad’s papers,” I say. “Look for a bank statement or maybe a safe deposit box key.”
The only thing she finds is shoe boxes filled with fishing trip photos and this:
family photo: my father wearing overalls and a ball hat standing between Greg on his left and Scott on his right, with his arms around them.
I wonder if Greg wanted that photo. I wonder if Scott did. I wonder if they exist to him.
___
January 2018: I return home for my appointment in the Connective Tissue Clinic at one of my childhood hospitals, the same clinic where my sister got diagnosed with EDS. It is my turn to be written into this genealogy with my father and brothers and sister. For my connective tissue to become part of the connective tissue that binds us.
It’s seven years since my last and only visit. Nobody in my family has seen me with a walking cane, rollator, ataxia, hearing aids. I am recovering from DVT and a mini-stroke, still on blood thinners after I begged my doctor not to take me off them, weaker than I used to be. I am the same Karrie who left 18 years ago; I am not the same Karrie who left 18 years ago.
“That’s my Granite Mountain,” I tell my husband as I look out our hotel window at the hospital.
University of Iowa Healthcare skywalk with the windows glowing golden in the dark.
In my suitcase: hundreds of pages of medical records from my mother, my father, Greg, and me.
I may never know if my dad bought a house for his high school sweetheart, but I can draw the tracings of his heart on an EKG in 2005. I know the size of his aortic root dilation and how his hernia repairs failed. I know the precise date he refused to stop blood thinners against medical advice because he — like me — was afraid of another stroke. Is this family? Is this real?
The next day at the geneticist’s office, the doctor bends my elbows backward, measures the degree. Bends my pinkies backward, measures the degree. Pulls my thumbs to my forearms. Watches me hyperextend my knees, measures the degree. Shines a flashlight on my teeth. She examines my echocardiogram, reviews the records of my Chiari-Syringomyelia and scoliosis.
She says: You have EDS. It feels like something real. A real connection. I am part of a family. I made my own birthright, my own inheritance. I am my own skeleton key.
When she takes the family medical files, I think: Once records go in, they never come out. Families can be together forever.
___
In the hallway of my parents’ apartment building, I show my father my rollator, ask him to give it a whirl. He’s got a hospital rehab-issue silver walker, the kind you can pick up at the drugstore. He refuses to use it, keeps falling.
blue steel rollator with a basket parked in a car parking space
“Let me show you how to engage the brakes,” I say squeezing them and asking him to try.
“I’m going to need a new driver’s license,” he says, chuckling.
The state revoked his license after he totaled Mom’s van.
Now he is like me, the epileptic child who never learned to drive. He made himself like me.
“Keep it,” I say.
“Are you sure?” he says. “These things are expensive.”
“It’s OK,” I say. I guess I am leaving him an inheritance, too.
___
In the living room of my parents’ apartment, we talk about our hearts. Who has a hole in their heart, like Karrie? Who has an aortic aneurysm, like Karrie?
“Some of your heart problems, I have, too,” Dad says, and I can tell he is excited for the connection.
Why do our connective tissues have to be fucked up?
Scott asks me about Salt Lake City, talks about being Mormon. “I drink coffee and beer. I could never give them up.”
He is Mormon by shotgun.
I don’t tell him about Granite Mountain. “I almost converted,” I say. “But I could never give up coffee, either.”
We laugh.
Mom gets out her camera, directs us to stand together for a family photo. She is finally getting it: one last picture of us all together.
Is it real now?
When I leave, my father follows me out the door and shouts, “I love you!” across the parking lot. He looks so frail, so weak, like he can’t hurt me anymore, but then I remember the secret money. He is still hurting us. The heart of this father does not turn toward his children.
I’ll never understand why he did it.
He never loved us.
___
A month later, on the anniversary of Judy’s death, my father mails me his Harvard Heart Newsletter with an article highlighted:
headline: The Magnitude of Marriage: Better for Your Heart?
Marriage is saving his heart.
I’ve never hurt my wife–your mom–physically, but mentally I guess I did for … I don’t know why now. But I thought I would have time to make it up.
Today I was talking to a friend about my project of filing an IRS Referral to investigate the tax exempt status of the Association of Writers & Writing Programs, following yet another year of disability exclusion and ADA violations at the annual conference:
You all didn’t think I’d really do it, but here I am with AWP’s IRS Form 990 …
+annual reports
+case law on nonprofits that lost their 501(c)3 status by discriminating
+documentation of disability discrimination at AWP
My friend is a lawyer, so she very gently and sweetly wanted to make sure I understand I have zero chance of winning–not to discourage me from trying, but just to make sure I know what I’m up against. This is a very tough area of law.
She was much relieved when I said, “Oh, of course I am going to lose!” (Followed by my foghorn laughter!)
I told her about my ongoing performance series called Losing Propositions, in which I barrel into battle knowing full well I have no chance in hell, and in fact, it is the entire point: It’s the performance I am interested in, the idea that having nothing to lose is, in its own way, an extremely powerful position from which to operate.
I can scream and yell about AWP online because everything they could take away from me — seats on panels, a slot at a reading, maybe a guest post on their site — is already gone.
And here is a space in which I feel extremely comfortable. Happy, even. Is that weird? It’s my happy place, diving deep into legal research knowing full well the deck is stacked.
In 2015, when I was applying to PHD programs, it started as a performance, too. I was angry about AWP’s systematic rejection of every single disability panel, and I had always wanted to earn a PHD. These two things are not disconnected: AWP is primarily a network of member educational programs, and those programs are inherently ableist at their core. I thought, OK, I will apply to programs and seek accommodations in the process (primarily, a waiver of the GRE), and I will Facebook-blog each response publicly.
I expected every single program to slam the door in my face.
But do you know what happened? The very first school — my dream school, in fact — said yes. And then another school did, and another. Each one that said yes made a stronger case for the next school because I could list them all and say, “Seven other programs have granted this accommodation, which speaks to it being reasonable under the ADA.” It snowballed. By the time it was over, I had applied to so many programs I cannot remember the number now.
When schools denied my accommodation request, I argued my case and asked them to reconsider. If they continued to dig in their heels, I sent them research into the futility of the GRE in predicting success, particularly for underrepresented groups. When they dug their heels in deeper, I FOIA’d them, seeking very specific data that might help me estimate how many people in their programs are disabled, since schools do not keep track of disability as a form of diversity.
I got data dumps like you wouldn’t believe.
I posted everything on Facebook. Again: performance. Nothing to lose. Performing my losses.
But see? It was the “not having anything to lose” that fueled it. Thinking of it as performance made me powerful. Made me invulnerable to the pain of losing. Made me BOLD. But then, as often does in my work, performance became reality. In fact, some of those programs have since dropped the GRE requirement altogether. I can’t take credit for that development, but I can take satisfaction that my “test case” was on the right track.
Test case.
That’s what my friend said when I told her about this performance series. “You’re a test case!” She told me about historical cases where activists essentially did the same thing: they knew they were going to lose, but they had to at least try. Sometimes they won. Sometimes they lost, but — and this is key — got their enemies to come out and state their true position so they knew what they were really up against. And from there, they formulated new strategies.
I never thought of what I’m doing that way, but I like this framework. When I approach things like filing an ADA complaint against AWP in 2015:
Back in 2016, when I got that letter from the DOJ, I didn’t know what I had in my hands. I had a right to sue letter. Again: losing can be powerful all on its own. And as another disability activist told me, this letter is beautiful. It shows how long we’ve been fighting.
Every year, AWP treats our disability access & representation as a brand-new problem, as if we haven’t been fighting this fight, traveling in this same circle, over and over. But here we have proof. Legal proof. It is beautiful.
This is why I do it publicly: on social media, on my blog, in essays, in Twitter rants. I am performing justice. I want to show people it matters enough to fight–even if the odds are stacked against you. The process, the fight, the boldness, are what matter.
I know I have less than a 1% chance of winning on this 501(c)3 thing. That’s OK with me because … what if I do win? What if I’m the test case that becomes case law?
In 2016, when I moved to Colorado, I made protest art about the missing sidewalks and curb cuts. Everyone told me it was a waste of time. They had never seen a city respond to such a thing.
Karrie straddles the end of a sidewalk and the rocky grass where it ends, standing in a pyramid shape with her legs. In her front hand, she holds a red cane that matches her long red hair. Her other hand drags a pink suitcase behind her.
Do you know what happened by the end of that year? That sidewalk above got paved & the curb cut installed. The City saw my protest photos and just did it.
Sometimes, once in awhile, you fucking win.
But Losing Propositions–that’s where I find my power to keep going.
When I go in with the intent to lose, you can’t take my hope. You can’t take my dreams. You can’t even take my time.
If you tell me I am wasting my time studying 501(c)3 case law, I will tell you about how much I learned about the history of disability rights in education, like this case from my hometown. I will tell you how much I loved formulating a strategy, looking for ways to push disability justice forward. How can that be a waste of time?
CW: death, graveyard, car accidents (in newspaper photos and headlines)
On the anniversary of Challenger, I visited my brother’s grave for the first time.
Karrie stands behind her brother’s gravestone, her right foot far forward so her legs are in pyramid pose. She holds a red cane in her right hand and drags a pink suitcase behind her with her left hand, red roses blooming from the zipper at the top. Her long skirt is printed with her brother’s mugshot photo and her long red hair blows in the slight breeze. In the distance, a barren tree stands tall. Photo styling & concept by me; photo by Alan Murdock.
spectrogram of Steve Nesbitt saying Obviously a Major Malfunction, his voice in yellow against a green background.
Spectrogram of my brother saying “What secret’s that, honey?”from a phone call recorded by police. It looks like a denser version of the Nesbitt spectrogram.
I didn’t plan to go to my brother’s grave on the Challenger anniversary. My husband and I traveled to Cedar Rapids for my Aunt Joann’s funeral and my appointment with a geneticist.
We had very little time — only a few minutes — and we had to sneak to the cemetery without telling my family. I needed to be there alone. I needed to process it without the sibs or my father.
Except I can’t go there alone, not really: no buses reach it; I can’t drive. My brother’s grave is unreachable except by car. Even grief rites are inaccessible sometimes.
As we drove toward the cemetery, we passed Prairie High School, and I gasped. “We are in the territory of my brother,” I said. “This is the land of Greg.”
He lived near Prairie High, attended Prairie High. I lived to the north, attended Kennedy. We had different geographies. Sometimes it didn’t feel like we came from the same city.
When we turned onto Highway 30 and passed the ADM plant, I said, “This is the land of my father.” It’s where he worked my whole childhood.
It was the land of Greg, too. “My brother had his first life-changing injury there.”
I have always felt like that factory ate my brother.
“Watch out for the fog. It creeps over the highway and causes accidents. That ethanol factory eats cars.”
headline from the Cedar Rapids Gazette about a 23-car pileup near the ADM plant
Gazette newspaper photo of a car slid under the back end of a school bus, the top of the car crushed. Police stand to the side.The caption says the accident occurred near the ADM plant.
newspaper photo of a car crashed into a semi truck with the headline “Steam cloud blamed in fatal crash”
newspaper photo of person on a stretcher and fire & police officers after an accident. Headline reads: Steam cloud may force road closings. Zero visibility near ADM blamed for second accident
It felt like the ADM plant was standing sentry. Or maybe my father was. I always feel like he is there, at ADM, watching.
When we turned into the cemetery, I found my brother’s grave without even having to wander.
View from down the row of gravestones, with my pink suitcase standing upright next to my brother’s, marking it. This was a test photo that Alan took.
It felt like somehow I had always known where he was.
It was cold–not just any cold, Iowa cold. My hands froze so badly I could not control them at the end of the shoot, when we returned to the car so I could change my skirt and wig to rush to my mother’s apartment. I couldn’t open the wig bag or slide the cap over my head. My fingers refused to grip. I cried. I needed to get that red wig off me. It’s the hair I associate with Greg. It’s a secret. The skirt, too.
My joints hurt. They were all out of place. The pose caused subluxations in my ankles and knees from my newly diagnosed Ehlers Danlos Syndrome. It’s excruciating to stand and balance like that for my ataxia & syringomyelia, too. That’s why I chose the pose: it puts me in Parallel Stress (see my other images in this series at this link).
We had to hurry so nobody would wonder where we were. I didn’t have time to process it. I am still processing it.
Close-up of the gravestone, which reads: Gregory D. Higgins July 12, 1957 to Sept 26, 2008 Son Brother Father, with the Army Airborne logo engraved in the upper left corner. Pink artificial roses & other flowers and a tattered United States flag decorate it. Photo by me.
The last time I saw my brother alive: Challenger.
The first time I saw his grave: Challenger.
That I have to keep my grief secret: obviously a major malfunction.
cover of Life of the Mind Interrupted: Essays on Mental Health and Disability in Higher Education by Dr. Katie Rose Guest Pryal. The top half is a darker gray with the title in yellow, and the bottom half is a close-up of white flowers.
CW: mention of suicide, descriptions of ableism
Last week, I was talking to a friend about dropping out of my PHD program before I even began. “Honestly, I think it’s the best thing,” I said. “I would probably be in bipolar crisis if I had done it.”
My friend nodded. She’s disabled, too. She gets it. We both earned Masters Degrees. We both got sick, faced hospitalizations, survived manic episodes and more — all while trying like hell to churn out good work and not scare off our classmates and professors.
When I said, “I would probably be in bipolar crisis,” I didn’t mean I couldn’t do a PHD program. I meant PHD culture is toxic to people with disabilities. Before I delayed my admission (and later dropped out), I had pursued accommodations for my assistantship. At one point, Human Resources point-blank asked me how I ever expected to work in academia given my limitations & needs. When I said I had no intention of ever pursuing a career in academia, they were relieved. “You are much more likely to get the accommodations that way,” I was told.
As a novelist, attorney, freelance writer, and former law professor, Dr. Pryal became a major voice for disability rights in higher education after she took a sabbatical from teaching and spoke up about her mental illness in the Chronicle of Higher Education:
But I feel anxiety for another reason as well. I have a psychiatric disability—that is, a mental illness—that I’ve kept secret since I was diagnosed at the age of 21. So when the teaching evaluation called me “emotionally eratic,” I feared that my supervisors would believe the words. And, despite all evidence to the contrary, I feared that Mr. Eratic might be right.
Mostly I feared that everyone at work would learn about my secret disability, and that I would get fired because of it. I feared I would be seen as unreasonable, irrational, and therefore unable to do the work required of a professor. Because of my disability, my career would be over.
Much of Life of the Mind Interrupted draws from her columns in the Chronicle, as well as other essays, with updates and expansions. Covering everything from the tenuous, terrifying tightrope walk of adjuncting-while-disabled to practical advice for classroom accessibility, Dr. Pryal not only dismantles academic ableism; she makes the case for how easy it is to be accessible — and how it benefits everyone.
In “Disclosure Blues: Should You Tell Colleagues About Your Mental Illness?,” she writes about Elyn Saks, a professor at University of Southern California who gave a TED talk about disclosing her schizophrenia:
Sak’s advice is written from the position of a tenured professor, with great academic privilege, the most important one being near-bulletproof job security. But there are other privileges that come with the type of job she holds. For example, she gives the following advice to professors with mental illness: “Schedule your courses carefully. If your meds make you tired in the morning, try not to teach morning classes. Try to choose courses you like to teach — you will do a better job and feel less stressed.” As any contingent professor knows, we often choose neither our courses nor our class meeting times.
The first time I sought a scheduling accommodation as an adjunct, I lost my job. I was teaching online, and each class included a live weekly webinar. I always selected sections with daytime or early evening webinars: late nights = seizures. When the department overhauled the scheduling system, instructors lost control over seminar times, and I was forced to seek accommodation.
My department’s response? Tell fellow faculty about my epilepsy, beg for a daytime seminar, and hope for the best.
“That is not how accommodations work,” I told my department director. “I shouldn’t have to expose my private medical information to colleagues.”
Epilepsy comes with serious stigma: People think you are devious, crafty, lazy, dishonest, and dangerous. They doubt your intelligence, too (never mind intelligence is itself an ableist measure.) I’ve been called “idiot” or the r-word a lot when people find out about my seizures.
My director fired back. “You never told me you were disabled before.”
I wasn’t fired. Oh no, they knew enough not to outright can me. Instead, they withheld information, resources, and student contact lists, making it impossible to fulfill my duties. If I emailed my director with a question, he would critique my email instead of answering. “Learn how to write shorter emails,” he quipped once, after I sent him two paragraphs detailing a complex & urgent issue with a student. He was calling into question my competence, just as I had feared.
The saddest thing? None of it had to happen. The original scheduling process was accessible: We chose our times and that was that. No scheduling accommodations needed.
And that is a key point of Dr. Pryal’s book: accessibility and accommodations are not the same thing:
But the accommodations model requires us to disclose our disabilities, it requires us to explain, to give up secrets we might not want to share. The accommodations model depends on invasions of privacy to work.
Accessibility, alternatively, means that a space is always, 100% of the time, welcoming to people with disabilities. Accessibility means that ‘accommodations’ are integrated into a space and are not particularized to an individual–but rather created for our society as a whole. We, as a society, are disabled people. Therefore we, as a society, build spaces and procedures for disabled people.
It really is that simple.
And she shows how simple it can be with her “universal design alternative to the whiteboard,” in which she projects a blank document from her laptop onto a projection screen and writes a daily “class record.” Each week, she saves the file and emails to the entire class. “And my students really got into it,” she writes. “‘Put that on the class record!’ they would request during class, when I said something they found particularly helpful.” This was all in response to a student who couldn’t see the whiteboard and requested lecture notes in PDF. Accessibility benefits everyone. No barriers. No documentation. No invasion of privacy.
That last bit is key. Remember I mentioned my PHD assistantship accommodations? To get those, I not only had to declare I wasn’t pursuing an academic career; I had to turn over medical records and discuss — at length — my mobility limitations, mobility aids, and medication side effects. The medication side effects turned out to be more important than my actual disabilities: Side effects are easier to understand, easier to “prove,” and easier to accommodate. It was awkward and invasive. I felt like I was talking to a medical assistant, not my HR department.
As Dr. Pryal writes, “we cannot ignore how race, gender, socioeconomic, and other kinds of privilege affect how people with disabilities live and work.” In “Shattering the Madness Monolith,” she shares stories of academics with diverse identities. One of them, speaking under the pseudonym “Annie,” reveals how she struggled to receive medical treatment as a Chinese-American woman, with one doctor even telling her “it was normal for Asian women to be anxious and stressed out, and anxiety was causing my abdominal pain.”
Probably my favorite essay is “Breaking the Mad Genius Myth,” about Kurt Cobain and the romanticization of mental illness as “genius.” Of all the myths about mental illness, this one has done me the most harm: Bipolar robs me of credit for all my hard work. Don’t ever take medication, people will say. It will ruin your writing. They are wrong. As Dr. Pryal argues, creative people are more productive when their psychiatric symptoms are under control. For years, I bought into the myth, though. I believed medications dulled my shine. Now I know better, but I still have to listen to people deny my hard work and praise my epilepsy & bipolar as “genius.” At the same time, literary colleagues have outright accused me of exaggerating my experiences because they perceive me as “that unreliable crazy person.” That’s the problem with “mad genius.” It’s inherently “unreasonable,” as Dr. Pryal points out. The whole “genius” of it lies in being beyond “normal” reason.
While the myth of the “mad genius” romanticizes mental illness, the taboo around suicide & suicidal ideation is strong as ever. As Dr. Pryal writes in stunningly honest, heartbreaking prose, “Suicide didn’t almost kill me. The taboo did.” Taboos make us keep secrets. Taboos keep us from seeking help. Taboos keep us from asking for what we need.
Now imagine your career depends on living the “life of the mind” and you’re suicidal.
Ultimately, the reasons I couldn’t do my PHD program came down to the smallest things: I needed Paratransit; it’s not included in the student bus pass and too expensive. I needed a part-time load; part-time is not allowed. Other things, too. Along the way, as I delayed my decision, more than one doctor told me, “I’m worried about you doing a PHD.” One went so far as to say, “Don’t do it.”
“It will throw you into bipolar crisis,” she said. “I see it all the time.”
Which is why I am recommending Life of the Mind Interrupted to everyone.
Want to read about some of my ink magick? Find it right here. I chose the page rather than post format because it’s formatted partly in two columns and needed more width. Enjoy.
drawing of a spinal cord, vertebrae & brain with a tidal wave leaking from the back of the cervical spine and washing back toward the body, a gold-capped molar caught up in the wave; the spinal cord is drawn in black with gold illumination, the vertebrate in black with gold illumination over them, and the nerves, brain, and wave in ultramarine blue.
One of those houses on G Avenue: my mother’s childhood home. When we visited in 2011, she led us to the lot where it used to stand. She pointed to all the other empty lots where people she loved used to live. After derecho, I got a log from a tree her twin brother used to climb to sneak onto the rooftop.
Karrie higgins 