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Profiles

Charting Her Own Flight Plan

A hearing disability grounded K. Renee Horton from becoming an astronaut. But it didn’t stop her from realizing her dream of working at NASA.

For as long as physicist K. Renee Horton can remember, she has wanted to be a scientist.

Every Christmas growing up, in fact, the young Horton taxed both Santa’s wallet and patience with her STEM enthusiasm.

“I would be like, ‘I only want a telescope.’ Or, ‘I only want a microscope,’” she says. “My dad kept saying, ‘Is there nothing else? You need to give Santa a range here.’”

Photo: Alendar Iejo

“I’m almost certain when my parents’ egg and sperm met, one of them said, ‘I’m going to be a scientist,’ and the other one said, ‘I’m going to make that happen.’ It was in my core.”

Horton is the Lead Metallic and Weld Engineer for the Space Launch System (SLS) at NASA’s Michoud Assembly Facility in New Orleans, LA. Designed to enable deep-space exploration, the SLS will be the largest, most powerful rocket ever built.

“My job is to make sure that the welds and anything metal on the [SLS] rocket are good after we’ve built and put it together,” she says. “I am the person who oversees the requirements that deal with metals and welds.”

It’s inevitable — nearly impossible not to, even — to categorize Horton as her own kind of Hidden Figure. As a black woman in STEM and one of the self-described “SLS boots on the ground,” Horton and her work at NASA — though unlikely to make headlines directly — will be instrumental in sending the first human beings to Mars.

Factor in that she’s also a bald, hard-of-hearing, former college dropout and mother of three, and Horton breaks every fusty mold of the white male scientist stereotype. But doing so hasn’t been easy, particularly where her hearing was concerned.

Factor in that she’s also a bald, hard-of-hearing, former college dropout and mother of three, and Horton breaks every fusty mold of the white male scientist stereotype.

“I have a disability that you don’t see,” Horton says. “If somebody’s in a wheelchair, you’re like, ‘Oh, they need a ramp.’ But if I tell you I need CART services [real-time captioning], you’re looking at me like, ‘Are you privileged or entitled?’ So there were things I just didn’t do for a very long time.”

“Then I woke up one morning, and said, To hell with this. The world is going to give me what’s mine.”

The Right Stuff

Hearing loss is a recessive genetic trait that runs in Horton’s family but hadn’t surfaced for generations — if ever. “None of my living relatives knew anybody in our family who was deaf or hard of hearing,” she says. “I’m a freak of nature.”

A Baton Rouge native, Horton describes her condition as hearing loss in both ears, with the right being more pronounced. She can hear most sounds at high and low frequencies, but has trouble in the speaking range, making conversation and active listening challenging.

While representation and access for people with disabilities in STEM fields remains low, Horton says NASA in particular is “very good” about hiring and accommodating people with disabilities. In fact, the level of accommodations NASA provides impressed her so much as an intern that she “knew NASA was the place for me.” Horton completed her dissertation work with NASA and got her first industry job out of grad school there as a mechanical test engineer in 2012. She’s been with the organization ever since.

At work at NASA’s Michoud Assembly Facility. Photo: NASA, Steven Seipel

Horton spends much of her workday in office environments, so her personal accommodation needs at NASA are low. She wears digital hearing aids in both ears, and most of her colleagues, she says, are “very accommodating” when asked to repeat something or share notes in meetings.

Of course, conditions aren’t perfect. When Horton visits remote sites, such arrangements are harder to come by, and she must often remind her colleagues of practical realities.

“I love SLS. Every day we’re doing something that’s moving toward history. It’s really an amazing feeling to be a part of it. That’s my rocket that’s in there.”

“Like, ‘I can’t be the secretary, guys,’” she says. “I don’t even make it a woman issue. You don’t ask the deaf person to be the person to take the notes.”

Horton must also be particularly vigilant when navigating Michoud’s industrial plant (where the SLS is being built), an environment much larger — and louder — than your average office space.

“I have to be more aware of my surroundings in the factory because the noise drowns out voices most times. I do a lot of lip reading when out in the factory. Sometimes I do have to remind those I work with that I am hearing impaired so that they can face me when speaking. I am also very aware of where I sit in certain situations.”

Despite these necessities, however, that factory environment — or rather, what it contains — is part of what drew Horton to Michoud in the first place.

“I would come down here to visit [Michoud], and I would be sick or crying when it was time to go back,” she says. “I wanted be with the hardware. I wanted to see it every day. It actually limits my advancement, my promotion-ability, to be here. But that innate happiness that comes with being here is more than anything financial could ever give me.”

That happiness in evident in Horton’s every word about her job. “I love SLS. Every day we’re doing something that’s moving toward history. It’s really an amazing feeling to be a part of it. That’s my rocket that’s in there.”

Grounded

Horton’s journey to Michoud, however, was very nearly scrubbed before it began.

Horton’s hearing loss manifested for her as a young child as a shouting voice and trouble following teachers’ instructions. No one thought at the time to test her hearing. Instead she was labeled with the then-common term “retarded” and placed in special education classes.

“I was constantly yelling to hear myself, so they taught me how to speak and not to yell,” she says. “They also got rid of my Louisiana drawl accent and taught me not to talk with that clipped sound that people who are hearing impaired end up with.”

Horton’s speech therapist recommended she be transferred out of remedial classes and tested for the gifted program instead. The move aligned well with Horton’s strengths: while she had difficulty comprehending and interacting in the traditional classroom, she excelled at the gifted program’s independent study format.

Inspiring a new generation of engineers. Photo: NASA, Steve Seipel

Despite this initial hiccup, Horton advanced quickly through her education, finishing high school at age 16. By then she’d had her cosmic career plan all worked out: join the Air Force, then proceed on the path to becoming an astronaut.

“I didn’t know anything else,” she says, “but I wanted to work for NASA.”

But her plans went into free fall when she failed the hearing test of a routine Air Force ROTC physical.

“I didn’t know anything else,” she says, “but I wanted to work for NASA.”

Horton had already been struggling in her undergraduate courses at Louisiana State University (LSU) because of her as-yet-undiagnosed hearing condition. But the results of that hearing test knocked her completely off her trajectory. Because of her hearing, Horton was disqualified from becoming a pilot. And, by extension, an astronaut.

“I didn’t know who I was anymore. My whole life had crashed in front of my eyes before I turned 18.”

Describing the thoughts running through her head at the time, Horton surmised that “maybe I’m not whole as a person. Maybe God doesn’t love me because He did this to me. Maybe I’m not worthy because I’m defective.”

Lost and frustrated by her lot in life, Horton dropped out. She got married, had three children, worked odd jobs. As for her newfound disability, she decided “to ignore it” — a choice, she admits, affected not only her studies, but her marriage as well.

But she didn’t give up science forever. In 2000, now divorced and raising three children between the ages of one and nine, Horton returned to LSU. The technology and services existed to support her and accommodate her disability. But first she had to ask for them.

“I remember walking into the vocational rehabilitation center in Baton Rouge and telling them I wanted to go back to college, but my ears were broken,” she says. “I was 27. It took me ten years to accept my ears were broken and needed help. Ten years.”

A New Mission

At LSU Horton got her first pair of hearing aids, early analog devices that she describes as “huge.” “It looked like a big bug was behind my ear,” she says, “so I grew my hair to cover it.”

LSU also provided Horton the use of an assisted listening system, in which lecturers wear a special microphone that pipes their speech directly into a pair of earphones.

This second time around, Horton also chose to play to her strengths, focusing her studies on programs that emphasized reading-based learning over heavy lectures.

“I wanted what was inside of me fundamentally more than I wanted to allow the hearing impairment to stop me,” she says. “So I looked for ways to be able to be successful.”

Crediting this newfound combination of adaptability and acceptance — plus the support of her children and a lot of hard work — Horton graduated LSU with a BS in electrical engineering. A few years later, she became the first African-American to earn a PhD in materials science from the University of Alabama.

Photo: Alexander Iejo

Horton now travels regularly doing speaking engagements and outreach to help others pursue and succeed in STEM, and posts regular affirmations on Twitter. This year she also started a nonprofit organization called Unapologetically Being to help others feel confident about themselves and about requesting accommodations.

In that vein, she has since stopped hiding her hearing aids: three years ago, in solidarity with an aunt with cancer, Horton shaved her head.

“I wanted what was inside of me fundamentally more than I wanted to allow the hearing impairment to stop me.”

Leery of the results at first, she caught sight of herself — hearing aids and all — in the mirror one day, glowing, and realized, “I was forty-something, and I was looking at Renee for the first time.” The style has stuck ever since.

As for her childhood dreams, Horton never got to become an astronaut, but she did land that dream job at NASA. And she’s already traveled to space.

Just months after returning to NASA after graduation, she was assigned to the Orion spacecraft project, the vehicle that will carry the crew via the SLS to Mars and NASA’s first deep-space launch since Apollo. As part of the project team, Horton was able to write her name — as well as those of her parents, children, and sister — on the Orion vehicle itself. The Orion test-flight launched in December 2014.

“I was all giddy like a kid that my Christmas gift had finally come,” Horton says. “My name got to go into space. It was my way of going into space.”

Profiles

Reclaiming A Disability Slur Through Dance

As part of Heidi Latsky Dance, an NYC-based troupe of dancers with and without disabilities, Jerron Herman wants to show the world there's beauty and grace in cerebral palsy.

When modern dancer Jerron Herman was sixteen, he watched the 1989 film My Left Foot, starring Daniel Day Lewis as a spastic quadriplegic Irishman who teaches himself to paint and write using his only controllable limb—his left foot. “I cried like a baby when I saw it,” Hermann told Folks. “I remember thinking, ‘This is the first example of someone with Cerebral Palsy I’ve ever seen represented in media anywhere. It was sad that it took so long to find an example I could glean from.”

Herman, who has hemiplegic Cerebral Palsy, a neurological disorder that prevents the brain from sending proper signals to the muscles, resolved to become an artist of some kind—to help combat the virtual invisibility of disabled people in the media. “I wanted to tell stories different from what you’re used to,” he says. “I was not gonna be a cliche story.”

But at 16, the creative outlets available to him seemed limited: “Performance was never expressly a viable option for me. It was kind of that invisible dialogue between society and yourself—I’d think, ‘Nah, I’ve never seen anyone like me doing X, so I wouldn’t fit into that space.’”

I was not gonna be a cliche story.

Naysaying of Herman’s abilities began when he was still an infant. When he was diagnosed at three months old, doctors offered a worst-case-scenario prognosis: “They told my parents that I wouldn’t be able to clothe myself or feed myself independently, I wouldn’t be able to walk independently, I’d have a hard time with speech, there would be cognitive delay—basically, that I would need assistance with everything,” Herman says.

If you’d told those doctors that, at 26, Herman would be doing arabesques and jetes across the stage of Lincoln Center in New York City as a full-time member of the Heidi Latsky Dance Company, they might have laughed.

Growing up in Alameda, in the San Francisco Bay Area, Herman found that, though Cerebral Palsy limited mobility on the left side of his body and made him prone to spasm, he was capable of much more than his doctors had expected. “I was primed to subvert the prognosis, because it had such an overwhelming, overarching rejection of my abilities, that I thought somewhere it had to be wrong—in at least one of these don’ts, there had to be a do,” he says.

Photo by Amro Arida.

His parents encouraged this mentality. “They didn’t allow me to internalize the diagnosis,” Herman says. “They didn’t allow me to exaggerate how it affected me beyond reality.” When he was in preschool, they transferred him from a special education program to a mainstream public school. When it came to things like chores, they expected as much from him as from his able-bodied older brother, now an artist and an actor.

You need to keep control of your spasm. You’re called to the same amount of self-management as anyone else is, so start now.

“They instilled a sense of agency in me,” Herman says. He remembers shopping at Pier 1 with his dad as a kid, navigating aisles of expensive glassware: “My dad said quite bluntly, ‘I’m not paying for you to break a vase. You need to keep control of your spasm. You’re called to the same amount of self-management as anyone else is, so start now.”

Every Sunday, his parents took him to Acts Full Gospel Church of God In Christ in Oakland, where Herman first discovered dance. “Praise dance was very big in those years, when I was five, six, and seven,” he says. “I was exposed to people who would feel this overwhelming energy, this power that would cause them to dance. I was born into a body that wasn’t necessarily made for dancing, but if something overwhelming and powerful was coming forth, if God breathed it, then it was available to me. Church was the first context in which I danced without any kind of hindrance or inhibition.”

As preteen self-consciousness set in, though, he retired to the sidelines during praise dancing. It would be more than a decade before he once again shed his inhibitions. Despite his resolve to prove the doctors wrong, he still held deeply negative views of people with Cerebral Palsy, and feared for his future with the condition. “I’d see bedraggled homeless men doubled over, palsied bodies that weren’t taken care of, and I remember thinking that would be my trajectory, really,” he says. “That eventually, my limbs, musculature, everything would just degenerate. When you see someone who might have Cerebral Palsy, you don’t usually see their strength, freedom, liberation, you don’t see upward mobility—and that scared the heck out of me. You’re like, ‘what’s my position gonna be?’ So it was hard as a kid to think beyond that.”

I’d see bedraggled homeless men doubled over, palsied bodies that weren’t taken care of, and I remember thinking that would be my trajectory, really…

As an undergrad at NYU, Herman chose to study writing—because it involved minimal use of his body, so he figured it was the only form of creative expression that was really available to him.

Herman became a dancer almost by accident. In the summer of 2011, as an education apprentice at the New Victory Theater in New York, he signed up for a week shadowing the choreographer Shawn Curran, assuming he’d work as a teaching assistant. But on his first Monday, “Curran wanted me to be a participant. He invited me to do all the dance exercises that the public school teachers are doing.” By Tuesday, “Shawn was harassing me to dance. Of course, he knew I had a disability, but he thought I could do my own, different movements”

On Wednesday, Curran told Herman about a choreographer named Heidi Latsky, whose modern dance company’s mission is “dedicated to redefining beauty and virtuosity.” On Thursday, Curran handed Herman a ringing phone with Latsky’s manager on other line. “The following week, I was in a studio auditioning for Heidi,” Herman says. He landed a role in the GIMP Project, a series of dance pieces that aim to challenge preconceptions about beauty and body image.

“I had zero ambition to do dance,” he says, “so for Heidi to see something in me was incredibly energizing and beautiful. I now call Shawn my fairy godmother.”

Soon, Herman was performing GIMP with Latsky at Lincoln Center.

[Editor’s Note: In the above performance, Herman can be seen at the beginning, then again at the 3:20 mark.]

Of the intentionally provocative title, Latsky wrote: “‘Gimp’ is a word we’re taught not to use, just as we’re taught not to stare at people who look different.” However, the title embraces the lesser-known Oxford English Dictionary definitions of the word:. “fighting spirit; vigor” and “to turn, vacillate, tremble ecstatically.” These definitions were the foundation of the GIMP Project, which featured dancers of “all shapes, sizes, ethnicities, races, people with disabilities, people without disabilities.”

Among the cast was a bilateral amputee, doing an aerialist number using strands of purple silk; a woman who was eight months pregnant;  a couple of deaf actors; a burn victim; wheelchair users; a transgender person; older people; heavyset people; little people.

Dance became a platform to shake up how you think about dance, disability, my body… it’s activism by presence.

With whirling limbs and electrified shudders that echo his childhood praise-dancing in church, Herman played a role previously played by Lawrence Carter-Long, an influential performing artist and activist with cerebral palsy.

On stage, Herman’s limp becomes “an angry strut,” as the New York Times put it in a review of the “beautiful and moving” GIMP Project. What he lacks in mobility on his left side he more than makes up for with his muscular right side, which trembles ecstatically, per the preferred Oxford definition of “gimp.”

[Editor’s Note: Herman can be seen performing at the 25:30 mark in the video embedded above.]

“Dance became a platform to shake up how you think about dance, disability, my body,” Herman says. “It’s activism by presence.” In the summer of 2012, Herman became a full-time dancer in Heidi Latsky’s company; now, he also works as the company’s development consultant.

“My Christian upbringing and dancing in church did relay a kind of freedom in the body and the idea of investment; like, God has endowed you with this body, so use it!” he says. “And with that, you dance freely and maybe even dance professionally. As I have a disability and disability is characterized by limited mobility, I’m tempted to think that my dance career is divinely designed to upend our notions of what’s possible.”

My Christian upbringing and dancing in church did relay a kind of… idea of investment; like, God has endowed you with this body, so use it!

In 2017, a dance company like Latsky’s, which features disabled and non-disabled dancers, is still a rarity in the world of performing arts. When starting out, Herman had to write the script for himself; he didn’t have a single example of another professional dancer with Cerebral Palsy to model himself after. The scene is starting to change—Herman mentions fellow young performers with Cerebral Palsy like Jessy Yates, an actress and activist; Mark Travis Rivera, a choreographer and activist; and Greg Mozgala, a dancer—but performance is still widely seen as off-limits to the disabled. What would it take for Latsky’s approach to become closer to the norm instead of the exception—for the performing arts to become more automatically inclusive?

Herman suggests that, while established performing arts institutions should strive for more inclusivity and diversity of representation, cultural change will rely first on people with disabilities refusing to internalize stereotypes—and insisting on their own worthiness instead. “If more people with disabilities were audacious with their lives, identities, and beings and thought of themselves as worthy to grace Lincoln Center or the opera houses or the film world,” Herman says, “I think there would be this thing that would happen wherein we could not be silenced.”

Top photo by Dan Kim. 

Profiles

How “The Autistic Academic” Got Her Sci-Fi Writing Groove Back

In both the real world and through the pages of her fiction, Dani Alexis Ryskamp is looking to overthrow people's preconceptions of what it means to be autistic.

When Dani Alexis Ryskamp was nine years old, she read through all of her dad’s old undergraduate psychology textbooks in an effort to figure out what was “wrong” with her. “I knew I was different from other kids the moment I set foot in kindergarten,” Dani told Folks, “and my mother, my teachers, and my peers all made it very clear that ‘different’ was wrong.”

Dani Alexis Ryskamp, posing for an impromptu selfie.

Throughout childhood, Dani had no friends and was viciously bullied at school. She spent most of her time alone, reading fantasy novels, like Madeleine L’Engle’s A Wrinkle in Time quintet and Vonda McIntyre’s Dreamsnake; taking dance lessons; and running around on her mother’s forty-acre farm in rural Barry County, Michigan. Her mother’s advice for dealing with bullies—to be excessively ‘nice’ to them, in hopes that they’d respond in kind—was almost as misguided as her teacher’s: “‘Well, the other kids wouldn’t do this stuff if you’d try to be more like them,’” Dani remembers being told. “But it didn’t seem to matter how hard I tried. There was something they understood that I didn’t.”

All of this left her feeling “crazy, broken, worthless, fucked up.” Panic attacks and dissociative episodes afflicted her regularly. The world felt like a sensory onslaught. Motor function wasn’t always predictable, and she felt helpless in any social situation that didn’t let her rely on a script.  At age seven, she made her first suicide plan.

Dani’s precocious textbook-reading did more harm than good. The 1970s-era, 101-level psychology textbooks “convinced me that what I had was schizophrenia and that the only treatment was to be locked up and loaded down with tranquilizers,” she says. “It became my life’s mission to hide that I was ‘crazy.’”

It didn’t seem to matter how hard I tried. There was something they understood that I didn’t.

In an escapist fifth-grade fantasy, Dani designed her dream house: A four-room log cabin, far away from the world of bullies, where she would spend her days writing science fiction, communicating with her editors and publishers via phone and fax. “I’ve wanted to be a writer ever since I knew where books came from,” Dani says.

But working from home wasn’t yet mainstream in the early 1990s, and so every adult in Dani’s life—except for her dad—dismissed her solitary-writer-in-a-cabin life plan as ridiculous. “By the time I’d left for college, the idea of being a working writer had been pretty well beaten out of me,” Dani says. As a college freshman, she discovered she hated her chosen major—mortuary science—and went on to get a B.A. in English before going to law school (“The same naysayers who talked me out of being a professional writer convinced me there were no jobs to be had with a Ph.D. in English, either”). All the while, she suffered from the same inexplicable sense of being “crazy, broken, worthless, fucked up.” Working in insurance defense left her physically and mentally ill; she burned out after a year.

It wasn’t until 2009, when Dani was 26, that she finally got the answers she’d been seeking as a kid reading her dad’s psychology textbooks. After burning out at the law firm, she visited a psychiatrist. In just a few hours, she was diagnosed with autism.

“In hindsight, I already knew that I was autistic: I’d been dating an autistic man for about six years, and I’d done enough reading that I could see myself in the literature,” Dani says. “The diagnosis came as a massive relief to me. Autism is called ‘pervasive’ for a reason: it affects every thought, every perception, every process. It says a lot about how sick I was at the time, physically and mentally, that I needed a psychiatrist to say the word before I realized that I’d kind of already figured that one out.”

All through her childhood, Dani had assumed she’d grow out of being different: “That I’d wake up one morning and I’d just understand what was going on socially, lights and noises and textures wouldn’t hurt, and my body would do what I wanted it to do whenever I wanted it,” she says. “It wasn’t until my diagnosis that I realized that I wasn’t going to ‘grow out of’ it, and it wasn’t my fault that I couldn’t.”

Not everyone was as relieved by the diagnosis as Dani was, though. “My mother’s response to the news was to say, ‘Do you think I did this to you?’” Dani remembers. “I confess that I laughed at her – by then, my dad and I had already decided I got it from him. (He has not gotten a diagnosis because he doesn’t see the point.)”

It wasn’t until my diagnosis that I realized that I wasn’t going to ‘grow out of’ [autism], and it wasn’t my fault that I couldn’t.

Later, Dani made the painful discovery that she’d been evaluated by a psychiatrist as a two-year-old, because her dad and babysitter had seen early signs of atypical processing—but her mother had buried that information during a rocky divorce from her father. “My mother still hasn’t accepted my diagnosis,” Dani says, “and that drove a wedge between us I doubt she’ll ever be able to mend. Because that diagnosis saved my life, and to hear her continue to treat it and me as a tragedy is heartbreaking.”

Ryskamp edits the Spoon Knife series of anthologies for Autonomous Press.

The diagnosis saved Dani’s life, in part, by paving the way for her transition from a soul-deadening insurance job to pursuing her childhood dream of being a writer. “The most valuable part of being autistic, for me, is that it’s given me an understanding and command of language that I’ve never seen in anyone who wasn’t neurodivergent in some way,” Dani says. “I wouldn’t be as good at what I do, or enjoy it as much, without that ability.”

She immediately enrolled in an M.A. in English at the University of Michigan. There, she met Athena Michaels-Dillon, the Production Coordinator of Autonomous Press, an independent publisher with the tagline “Weird Books for Weird People”: In other words, books about neurodivergence, queerness, and the various ways they can intersect. Titles include The ABCs of Autism Acceptance and The Real Experts: Readings for Parents of Autistic Children.

Autonomous Press seeks to foster better understandings of autism and other forms of neurodivergence, and “to help neurodivergent people find community and an outlet for expression—to continue to establish our voices as real human voices worth listening to, by putting them in print,” Dani says. Because when it comes to societal approaches to neurodivergence, “pretty much everything urgently needs to change. Autistic and neurodivergent people are still searching for crumbs when it comes to basic rights.”

To put things in perspective, when Dani was born, the Americans With Disabilities Act (ADA) and Individuals With Disabilities Education Act (IDEA) didn’t exist. “We’ve gotten only marginally closer to accepting the idea that disabled people have a right to exist in public, even if the laws meant to familiarize us with that idea have no real teeth,” Dani says. “The mere fact of a mental or emotional health diagnosis is enough to jeopardize many people’s jobs, their right to raise their own children, their access to education, and their right to live independently.”

We’ve gotten only marginally closer to accepting the idea that disabled people have a right to exist in public, even if the laws meant to familiarize us with that idea have no real teeth…

In Autonomous Press and its main imprint, NeuroQueer Books, Dani found a group of likeminded people—the publisher’s partnership is currently all autistic—as well as a job that allowed her to use her legal expertise, writing skills, and lived experience as an autistic woman in a world built for neurotypical brains. Now, Dani is the resident attorney at Autonomous Press; her job is about about one-third lawyering and two-thirds editing. She’s co-edited NeuroQueer’s Spoon Knife series, an annual anthology of writing by neurodivergent authors; has a chapter in the upcoming NeuroQueer Handbook; and is currently working with veteran autistic activist Kassiane Sibley to turn her long-running blog into a book.

Dani blogs herself, passionately and prolifically, under the moniker “The Autistic Academic,” about everything from “Emotional Labor, Gender, and the Erasure of Autistic Women” to “The Autistic Adult’s Guide to Getting Hired.” Her work fiercely champions disability rights and debunks insidious myths about autism. Misunderstandings abound, of course; in Dani’s experience, the most common is the notion “that autistic people are somehow tragically unreachable or tragically deprived of the joys of a ‘normal’ human life – that we’re locked in, that we can’t understand other people’s reasoning or emotions, that we have no real feelings about anything around us,” she says. “I have yet to meet a single autistic person who actually experiences any of those things.”

Another pervasive misunderstanding is that autistic people can be categorized as either “high-functioning” or “low-functioning”—reductive terms that Dani finds unhelpful and insensitive. “‘High-functioning,’ of course, is most often taken to mean ‘almost a normal person,’ while ‘low-functioning’ often appears as a synonym for ‘burden’ or ‘tragedy case,’” she says. “Yet every autistic person I know varies wildly in their ‘functioning’ in various areas, even from day to day.  Some of us, myself included, have been described as both high-and low-functioning, sometimes by the same doctor in the same document.”

Autism is a state of constant flux.

Dani, for example, has three college degrees, but she can’t live alone because the steps involved in making food are too difficult for her to follow unassisted. She and husband spend time working out my scripts for various events and tasks before she does them. “Autism is a state of constant flux,” she says. “Describing our personal support needs is far more useful that dismissing us as ‘high-functioning’ or ‘low-functioning.’”

A sci-fi themed selfie: Ryskamp posing in a Star Trek doctor’s uninform.

Later this year, Dani will publish her first science-fiction novel, Nantais. It’s set on a post-apocalyptic earth, all but destroyed by global warming and rapacious overconsumption. The rich have fled for Mars or the Kuiper Belt (on the other side of Neptune), while a few massive, corrupt corporations control the earth’s remaining resources. Disaster strikes on the Jemison, a research vessel working for a corporation called Interstellar Science: The captain’s son has been kidnapped, the computer core is slowly freezing up, and their only hope is an alien woman who has to have her memory wiped if she wants to live.

“I’m wildly excited about it,” Dani says of Nantais. “This is a universe that has existed in my head in some form since about 1992, so I’m thrilled to be able to put it into print.” And so, some two decades after designing her dream cabin, Dani has showed up the naysayers: She works as a solitary writer, communicating with editors, publishers, and other writers remotely, just as she planned as a fifth-grader.

 

Profiles

Ladlefuls Of Space-Time

Losing her memory didn't make Emily Eifler lose her sense of identity.

Emily Eifler leads a beautiful life. Every morning, she wakes up in San Francisco’s Twin Peaks next to her husband of 12 years, thanks to the caterwauling alarm of their alarm clock cat, who rigorously needs petting at dawn. She lives in a tiny, picturesque little house, with a bright and fragrant garden, where she sits, stroking her other cat. As she does so, she eats toast, butter, and honey, while reading comics — fantasy comics like Kieron Gillen’s The Wicked + The Divine are her favorite. When she’s done, she practices her yoga, and maybe does some dancing on the patio. Then she goes to work.

tumblr_o94rdnikX91s2q3n7o1_500

“I just draw on my head.”

A tatterdemalion of bright textures and clashing colors, Emily bikes to her lab in SoHo. She makes for a morning-brightening sight: her head is half shaved, she wears rainbow wool dresses and silk scarves over leopard print leggings, and her eyebrows are often smeared with streaks of literal magic marker. “I don’t mess with lipstick or foundation, no mascara or traditional applications of eyeliner. No contouring or cover up or highlighter,” Emily says. “I just draw on my head.”

It works. She looks like an awesome video game character, which is sort of appropriate, because Emily is a respected VR researcher, who spends her professional days working on the problem of how people perceive and integrate into the virtual world.

For almost a year, Emily has been posting a spherical 360-degree-video on her personal blog every day. These spherical videos are specifically important to Emily. She lovingly describes them as “little ladlefuls of space-time,” a way for her to externalize a moment into a virtual room she can explore at a later time. “My videos are a way for me to construct memories,” Emily says. That’s important for her. She can’t form memories like other people can. Whether it takes weeks, months or years, Emily’s chronic amnesia always sweeps them away.

On her 10th birthday, Emily’s family and friends went to a local hotel pool for a swim party. Invisible amongst the squealing and splashing–except, perhaps, in the flickering of the candles on her birthday cake–a carbon monoxide and chlorine gas leak unevenly filled the area. Everyone was poisoned, but Emily and her mother, a doctor, were affected worst. Emily’s mother experienced stroke-like side effects that practically paralyzed her with a crippling migraine for the next eight years. As for Emily, she developed what she calls “a grab bag of neurological issues, from Alice in Wonderland syndrome to post-traumatic stress disorder.”

Like her mother, Emily gets chronic migraines, which she treats with magnesium supplements and medical marijuana. (“It’s a miracle drug,” she says. “They say too much pot makes you a slacker, but I only have a full-time job because of medical marijuana.”) She suffers from periodic and debilitating trembling attacks, where her entire body feels set to shake itself apart. Her body’s ability to accurately tell where it is in space, called proprioception, is also severely limited, causing significant balance issues and forcing Emily to walk with a cane. But this condition actually makes Emily uniquely suited to tackling how a person is supposed to physically sense where they are within a virtual world when they can see and hear it, but not feel it. Non-virtually, that’s a problem Emily’s been dealing with ever since she was 10.

Curiously, what many people might find the most horrifying side effect of Emily’s brain injury is the one which bothers her the least: after a few months, she forgets almost everything. “I can’t really remember anything after the age of thirteen,” she says. If what happened was particularly meaningful, Emily will remember the fact of it afterwards, but not the details, or any of the first-person narrative. For example, Emily says that she knows that she once went to China on a trip, but she has no memory of anything that happened there. She doesn’t remember what she wanted to be when she was growing up, or why she went to college.

I miss my brother, even though he died a long time ago. I don’t know what I miss about him, but I do.

Sometimes, not being able to remember is as tragic as people, largely informed by movies like Christopher Nolan’s Memento, might expect. Years ago, Emily’s older brother Ryan died. Emily knows this, it’s a fact, but she can’t remember what Ryan’s face looked like, what happened on the day he died, or really almost anything about him. It’s just not there. The only thing that is there is sadness. “I still cry about it sometimes,” Emily says. “I miss my brother, even though he died a long time ago. I don’t know what I miss about him, but I do. Trauma is sticky. Those emotions are still stored in my body; my body still recognizes the welling of my heart.”

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Beautiful with a fashion sense all her own.

But there’s also moments of great beauty in constant forgetting. Emily’s husband, Steve, who remembers things in “Technicolor detail,” is someone she says she is “constantly falling in love with” all over again. Because she can’t remember their life together, he lovingly describes it to her in newsletters, meant just for her. Through Steve, Emily is able to experience, again and again, the moments of passion, friendship, silliness, and tenderness that have intertwined them: their first date, their first kiss, the day they moved in together, the day they adopted their cats, and so on. Steve just never gets old for Emily. “Yesterday, he was in the living room, reheating food, while doing a silly dance and some weird voice,” she says. “I just sat there, thinking: he’s awesome, I love him so much. But I know I’m not going to remember this, which makes me enjoy it so much more in the moment. I can’t be nostalgic in the future. I have to be nostalgic for right now.”

I can’t be nostalgic in the future. I have to be nostalgic for right now.

One thing does concern Emily about her future. She and Steve have started talking about adding a baby to their happy household of buttered toast and cats. “We both want to have kids, but what does that mean? I’m going to forget their whole lives.” But ultimately, Emily and Steve don’t think it has to be a deal breaker. Even without a long-term memory, they know that Emily can be a good mother… the same way she is a great wife, a caring lover, a hilarious friend, a talented artist, a dutiful daughter, a respected professional, and more.

“When people first meet me, they’re so aghast that I don’t have a first-person narrative memory,” says Emily. “They think that if it disappeared, they’d disappear with it. But I’m still the same person: I didn’t lose my identity just because I lost my memory.” After all, everyone forgets. Emily just knows better than the rest of us that being good at remembering doesn’t have much to do with the kind of person you ultimately are.