Lisa Oppenheim: Spine — On disabled bodies and ableism in art

Yesterday, I saw Lisa Oppenheim; Spine at 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.

 

MOCA Cleveland describes the intent of the white line as “creating an intimacy between the subject and the photograph itself.”

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.”

 

Works Cited

“Lisa Oppenheim: Spine.” MOCA Cleveland, n.d. http://www.mocacleveland.org/exhibitions/lisa-oppenheim-spine

“Teaching with Documents: Photographs of Lewis Hines and Documentation of Child Labor.” National Archives, 21 February 2017.

https://www.archives.gov/education/lessons/hine-photos

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.

https://www.vice.com/en_us/article/3kanbk/lisa-oppenheim-unravels-haunting-images-of-teenage-textile-workers

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,

Library of Congress.

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.

Skeleton Key

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.

I didn’t know I was dialed into Granite Mountain Records Vault.

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.

 

Losing Propositions

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:

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:

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:/ 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)
full text in alt-txt or you can also read it here: https://www.instagram.com/p/Bgq6G6FHYsV/?taken-by=karrie.higgins

I think, somebody has to do it. Why not me?

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?

Losing, sometimes, is winning.

visiting my brother’s grave for the first 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.

If you have read my work, you know this date is significant to me. Two days after the last time I saw my brother, I watched the Challenger disaster on TV. I confuse NASA Public Affairs Officer Steve Nesbitt’s voice with my brother’s.

I’ve made spectrograms comparing them:

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.

 

how a man shamed me for using the whisper network

CW sexual assault

In college, I lived in the Foreign Language House, a special wing of a dormitory dedicated to students who wanted to practice a foreign language every chance they got. It was a close-knit group, and activities like naked Star Trek — which, as a survivor of sexual abuse, I had way too much body shame to participate in — were the norm.

One of the guys there gave massages. He was a good friend, and I trusted him, so when he offered, I said yes.

I don’t remember a lot about before & after, but I remember his hands slipping around my ribcage and touching my breasts. I remember his fingers sliding under my bra band and into the waist of my pants. I remember freezing. I remember being afraid to tell him to stop because he was a friend, and I didn’t want to hurt his feelings.

His feelings.

Never mind it triggered memories of my brother’s grooming,  hands slipping up the front of my shirt “on accident” while wrestling. Never mind I felt violated and used. I thought he was a friend. It was normal in Foreign Language House for people to touch each other — hugs, hand-holding, cuddling under blankets — and I had no reason to think a “massage” meant “sex.”

I want to say I pushed his hands away, but I don’t remember.

I want to say I told him to stop, but I don’t remember.

But I remember the aftermath. The aftermath was the worst part.

A woman moved into my dorm, and I warned her about the massages. I told her to watch out because you think it’s just a massage, but then he gropes you. “His hands start sliding under your bra,” I said. “If he offers, don’t do it.”

He had visited the room a few minutes before to introduce himself. I saw how he was looking at her, and I didn’t want it to happen to her, too.

I didn’t know I was participating in the whisper network, in which women warn each other about men who violate them.

And I didn’t know he was lingering outside the room, listening through a vent.

Later, he confronted me. “Sounds carry through those vents,” he said. “I heard you.”

He accused me of violating him. Hurting his feelings.

His feelings.

I wanted to ask how come he lingered outside that room. Was he worried I might warn her? Did he know he had done something wrong? I was too flustered with shame, too afraid of hurting his feelings again.

His feelings.

It was never the same after that. Friends stopped saving me seats in the cafeteria. I had hurt their friend’s feelings. He was such a nice guy. How could I even think he would grope me? 

Nobody asked about my feelings.

Nobody asked if I was OK or why it bothered me or what happened.

Nobody.

It was just like my family all over again: shhhhhh, keep things our little secret or else.

And it worked. The shaming worked. I started to think I had done something wrong.

Last night, I learned my husband (then an acquaintance) was on the other side of all this. He had to listen to this guy complain and whine about his hurt feelings.

“I explained to him over and over why he was wrong,” my husband said. “He wasn’t having it. To him, you were getting in his way, spoiling his chances to pursue other women.”

His way.

I left the dorm not too long after. He stayed. He got me out of his way.

 

 

 

 

Life of the Mind Interrupted by Katie Rose Guest Pryal

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.

Which is why when I learned Dr. Katie Rose Guest Pryal had written Life of the Mind Interrupted: Essays on Mental Health and Disability in Higher Education, I was ecstatic.

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.

And what about instructors and students who lack access to medical care? Or women of color, whose pain goes disbelieved, denied, and untreated? Transgender colleagues and students, who face misgendering and abuse at the hands of doctors?  The very concept of “documented disability” is exclusionary so long as access to documentation isn’t equal.

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.”

When I was a graduate student, a faculty member joked that proximity to a certain faculty member caused a couple seizures. The implication: my seizures are sexual. I don’t think anyone would have made that joke if I were a man.

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.

___

 

For more of Katie Rose Guest Pryal’s work, find her at https://katieroseguestpryal.com/ and The Chronicle of Higher Education