Posts

Q&As

The Feminist Rabbi With Autism Who Wants To Make Judaism Accessible

According to Rabbi Rutti Regan, the Jewish faith needs to reflect all aspects of the human experience, including what it means to have faith as a disabled person.

Recently, a coalition of Jewish news outlets and organizations—including Haaretz, the Jerusalem Post, or a disability blog called The New Normal—conducted a survey to understand the context of disability in the Jewish community. Despite the fact that almost one in five Americans have a disability, the poll found only eight percent of respondents were disabled. That strongly implies disabled voices are being excluded from the Jewishe community.

That’s a problem Rabbi Ruti Regan is working to change from within. As the first openly autistic rabbi to be ordained by the Jewish Theological Seminary in 2017, she focuses much of her energy on making the Jewish community and institutions for friendly to those with conditions: from instructing leaders on how to uproot ableism in their communities to transforming temples so they are accessible.

Folks spoke with Rabbi Regan to learn more about her projects and how she is personally and professionally committing to making religion inclusive. The interview has been edited for clarity.

What made you interested in becoming a rabbi?

I saw it as a way to act on some of the things that I really care about. I started in academia studying History and Jewish Studies as an undergrad, and then studied at the Conservative Yeshiva in Jerusalem from 2008 to 2010, and in New York at the Drisha Institute for Jewish Education’s Scholars’ Circle from 2010 to 2012. But after spending that time in the academic circles, I realized there were leadership roles within the community that I wanted that required me becoming a rabbi.

What are some of the projects that you are leading now?

One of our major projects right now is to create resources and training for rabbis and cantors on disability-informed spiritual leadership.

Our society, in general, has got a lot of work to do in responding to the spiritual needs of disabled people. And, advances in disability studies are especially important to the communities now. There are specific leadership changes that need to occur using the tactics of disability-informed spiritual leadership: for example, how to give a sermon that applies to everyone in the room, including the disabled. Their spiritual needs are often not on the radar of people in leadership, even though, like me, they might be disabled or have a lot of friends with disabilities, and therefore be worried about death.

We’re also working on a commentary on the haggadah (editor’s note: the Jewish text that sets the order of the Passover Seder, the main meal) from a disabled perspective. The Haggadah project started in part because Autism Awareness Day is one of the most degrading days of the year for me as an autistic person, and one year, it fell two days before seder night. A major theme of the Haggadah is going from degradation to praise. It meant a lot to me that year. [My colleague] Jessica Belasco and I both saw a lot of resonance with disability in the Haggadah — so we decided to study it closely together and write a commentary. The

Haggadah is also about exile. It’s about living in exile and facing intractable oppression, and still believing in freedom and love, and building things that are sacred.

Is that work being done by your organization?

Yes. Our organization is called Anachnu, which means “We” in Hebrew. We are a religious organization. A lot of what we do is aimed at creating disability Torah (editor’s note: Torah in this sense refers to spiritual teachings, not the first Five Books of the Bible), in the same way that feminist Torah has been important. (And we’re both!) That’s why we’re writing a Haggadah commentary, and that’s why we’re creating materials for rabbis and cantors.

Can you tell me about how your explicitly feminist project, “Embodied: Disability as a Jewish Feminist Issue,” began?

When I was studying in Israel, my hevruta (study partner) was pregnant, and she was describing the ways that doctors and random people in the street were treating her and her body, and her experience was so familiar to me as a disabled person. People are very paternalistic and treat you as if you are not fully human. That mutual experience led me to create Embodied: Disability as a Jewish Feminist Issue, which is a 6 week online class, with the Center for Jewish Feminism.

How do you see your disability activism intersecting with feminism?

When we say that, “Feminism is the radical notion that women are people,” we need to think about everyone in our community. Conversations about disability aren’t always recognized in feminist circles. People with disabilities are people too.

The dehumanization of people with disabilities is so entrenched into our society that it can be hard to notice.

The dehumanization of people with disabilities is so entrenched into our society that it can be hard to notice. Society tells us that the people who matter are essentially cognitively and physically the same. For instance, when entering a building, if there is no ramp, it tells us that the people who will enter this space are all able to use stairs. In schools, educational strategies communicate that people who are the same age should have the same cognitive capabilities. That approach to pedagogy has led to the separation of students with disabilities. The problem is, it doesn’t help people with disabilities learn better; instead, it just furthers the marginalization of the entire population of people with disabilities.

How does your experience with autism affect your work as a rabbi?

People often ask me I overcame disability,, and I want to be really clear that I didn’t. I am who I am. Just like I can’t grow out of my womanness, I can’t grow out of my disability. And I am not special. There are lots of people are who are physically and cognitively similar to me who  are living without freedom, not because of their disability but because they are oppressed. I am not willing to separate myself from other disabled people.

What are the most significant tools available to community leaders for improving accessibility?

Being disabled or queer or a woman doesn’t make me an alternative Jew.

I believe that the most important tools are love and integrity. I love Judaism and Jewish liturgy. We’ve inherited something amazing. Every generation has added to and improved it, and now it’s in our hands to do some of that work. A lot of the work of the moment is to build ways for the Jewish tradition to more fully recognize everyone’s humanity. This is being done in feminist contexts, in LGBTQ contexts, in disability contexts, and so on.

For me, it’s not about creating alternatives — being disabled or queer or a woman doesn’t make me an alternative Jew. When our ritual does not reflect someone’s full humanity, we need to find ways of fixing that which can become normative. That is much easier said than done, but it’s also our responsibility to figure out how.

Q&As

The Autism Advocate

Stephen Shore is trying to change the conversation about autism, a message resonating with corporate America.

As Stephen Shore takes the stage to deliver a talk on the “superpowers of autism” at Adelphi University, the audience greets him with polite applause. Early in his talk, he describes being diagnosed with autism when he was two-and-a-half and how the doctors told his parents to place him in an institution, like the notorious Willowbrook facility for mentally ill children.

“Well, in some ways the doctors were right about the institutionalization,” Shore says matter-of-factly. “I am now at an institution.” He pauses, waiting for the joke to sink in and the audience to roar with laughter. “Of higher education right here at Adelphi University.”

It’s this type of unexpected but incisive observation that has helped Shore move the talk about autism forward, from awareness to acceptance and appreciation.

The 56-year-old clinical assistant professor of special education at Adelphi argues for looking at and engaging with autistic people in new ways, much as his parents did when he was a child. He has brought this message to audiences around the world and in books such as College for Students with Disabilities: We Do Belong.

When did you learn you had autism?

Stephen Shore.

I was lucky in that regard because I’ve always known pretty much I had autism. My parents used the word in the house for as long as I can remember. So about since five-and-a-half, when my speech pretty much normalized and I had enough awareness of what was going on and I knew I had this thing called autism. We didn’t know much about it, but it certainly helped explain a lot of differences.

Your parents fought hard on your behalfnot only to get you into school but to reach and communicate with you. What did they do?

Today we would call it an intensive home-based early intervention program that emphasized music, movement, sensory integration, narration and imitation. I guess the key breakthrough is that at first my parents tried to get me to imitate them. It’s a standard teaching technique and it works most of the time. But many people on the spectrum may not be able to imitate, especially when young. So then my parents flipped it around and they imitated me.

Give me an example.

If I flapped my hands, they would flap their hands. If I made a sound that I heard from the environment and repeated it, they would do that, too. Once they did that, I became aware of them in my environment. I think the key implication is that before you do any good work with someone, you have to meet them where they are and develop a trusting relationship.

“I think the key implication is that before you do any good work with someone, you have to meet them where they are and develop a trusting relationship.”

Where do you fall on the autism spectrum?

With the new Diagnostic and Statistical Manual of Mental Disorders, they eliminated Asperger syndrome [considered “high functioning” autism] and they just put everybody into the autism spectrum. The way they now look at autism is, it’s a spectrum without the subtypes of Asperger syndrome and various others. They look more at what the needs for support are. There are different levels: one, two and three, where one needs the least amount and three needs the most. Most of the time I would say I’m on level one, but there could be environments where maybe I go to a lower level.

How does autism affect your day-to-day life? Or is it normalized?

The word normal is interesting. Being autistic is my normal. The question is: how do I best work with my normal? There are some characteristics where I still need accommodation and can get in the way, such as sensory issues.

Such as?

The light may be too bright or there’s too much noise. Usually the TV is too loud for me. I might be very happy to watch TV at a volume of 9 or 10 on a scale of 100, whereas others who are with me will say they can’t hear anything and they may prefer volume of 30 or 60. Autism also affects me in the classroom. Part of autism involves difficulty remembering faces. It takes me all semester to begin to remember my students’ faces.

Conversely, are there things that autism makes easier? Put another way: Does autism give you an advantage in some things?

Yeah, it certainly can. It can give me an advantage in focusing on areas of interest. For example, preparing course material for my classes. We can have an extremely high level of focus in things we’re interested in and that can be helpful. It’s also helped me with musical ability as well as mechanical ability.

How so?

At age four, I was found by my parents taking apart a watch with a sharp knife. I’d pop open the back, take out the gears, take it all apart, put it back together again and the watch still worked and there weren’t any pieces left over. That has carried forward to taking apart bicycles. I can still take things apart, including watches.

What role does music play in your life?

Music is one of my autistic deep interests. When I started middle school—and you don’t need to have autism to have difficulties in middle school—it was actually better because I was able to join the band. I became so fascinated with music that I decided I needed to learn how to play all the instruments, every last one of them.

How did that work out?

I spent hours in the instrument closet figuring out how they worked. While I didn’t get them all done, I got up to about 15. I enjoy music a lot. I’ve composed pieces of music, playing in various ensembles. Now, I give music lessons to children on the autism spectrum.

Does music help you communicate with them in a way that verbal language does not?

Yeah, it certainly can. Whatever seems to scramble the music centers of the brain seems to leave the musical ones intact. For some of the students, I find that music is the means of communication. For others, music can help promote communication. What I find really interesting is when I have students who don’t speak. However, they still may be able to sing songs. I had students that had dozens of songs that they knew. And when I played the piano or we played the piano, that accessed something that allowed them to sing.

Do you find musical ability or aptitude prevalent in most kids with autism?

I find it more common. There is a higher incidence of perfect pitch, for example, in people with autism rather than in the general population.

You’ve said that the potential of people with autism is like the potential of anybody else. What did you mean by that?

One characteristic that’s not often mentioned is the widely varying skill set. What that translates to is this: the things we’re good at, we are incredibly good at. The things we’re not so good at can be really significantly challenging.

“The things we’re good at, we are incredibly good at. The things we’re not so good at can be really significantly challenging.”

Can you give me an example?

I have a doctoral student at Adelphi University who gets A’s in all her courses except for statistics and quantitative research. She has extremely well-developed skills in analysis, reading, writing—but at the same time, she’s so challenged in math that having a checkbook or credit card for her is really not a good idea.

You talk about taking autism to the next level and refer to the “3 A’s of Autism.” Let’s start with awareness.

Awareness provides a firm foundation for moving on to the next step. Awareness is what we’ve been doing for the past generation [through organizations like] Autism Speaks and the Autism Society of America. They’ve been pretty good at helping people recognize when autism exists.

Acceptance?

What acceptance means is that there is a transition from doing things TO people with autism—making them behave more like other people to reduce or eliminate autistic characteristics—to working WITH these characteristics. For example, it’s accepting that learning may be hard for a student on the spectrum but they have some really incredible skills visually. If we know that, we can then say we’re going to teach you visually. That’s working WITH the characteristics.

And appreciation?

That is where people on the spectrum are valued for who they are, for the characteristics we have. You’re seeing examples of that in more and more companies, such as Microsoft, SAP, Ernst & Young and others that actively seek people on the autism spectrum to work as employees. They’re working toward having one percent of their employees be on the autism spectrum because they realize there are certain things we can contribute that far exceed most of the general population.

Profiles

The Painted Words Of An Autistic Art Star

The text-based paintings of artist Dan Miller allow him to express the depths of his heart far more vividly than words ever could.

“STOP SAYING THE R-WORD,” reads a screen-printed poster that hangs in the window of Creative Growth Art Center, a nonprofit organization housed in a former auto-repair shop in downtown Oakland, California. In the center’s studio, artist Dan Miller hunches over a table covered in brushes and watercolor paper and begins to paint the alphabet. In blue acrylic that matches the blue hockey helmet he always wears, he scrawls a giant A, B, C, D, layering letters atop one another until they’re no longer legible. While he works, he chants cryptic phrases that sound like zen koans or fragments of experimental poetry: “Pull the light bulb from the socket? No,” he says. “Alphabet cookie, homemade cookie, right? Pull it gently, gently, right?”

“Right,” says Creative Growth staffer Kathleen Henderson. When Dan gets to Z, she hands him a fresh sheet of paper. Without taking a breath, he picks up a ballpoint pen and starts a round of furious scribbling. “Click, click, click,” he chants. “Click, click, click.”

Born in 1961 in Castro Valley, California, Dan was diagnosed with autism in early childhood. As he struggled with verbal communication, drawing became his primary mode of expression.

 

Diagnosed with autism at an early age, Dan Miller has become an artistic tour-de-force under the tutelage of the Creative Growth Art Center. Photo: Hannah Hughes

“From the time I can remember, Danny always liked to draw,” Cara Miller, Dan’s sister, told Folks. “He would draw on anything when we were kids. Inside books, on scrap paper, anything.”

As Dan was growing up—in an era in which people with disabilities were often institutionalized—his relatives never suspected that this compulsive drawing habit would someday propel him to art stardom. But they did invest significant time in his education: As a child, in addition to attending special education classes and summer camps, Dan spent hours every night working on reading and writing with his mother and grandmother, both schoolteachers. “Our grandmother was very dedicated to educating him above and beyond what he was getting at school,” Cara says. “Our Mom was always looking for tools and things that would help him learn—so he could learn to type, she got him one of the first portable computers ever made, which he still has.”

Miller’s art is reminiscent of the work of Cy Twombly.

When he wasn’t drawing or typing, Dan obsessed over tools and mechanical things, poring over his father’s catalogs for Grainger’s hardware, or taking apart clock radios, overhead fans, and light bulbs. This fascination with mechanics, as well as his ritualistic childhood writing practice, now shows up as motifs in Dan’s artwork, which weaves fragments of memory into abstract compositions. (Words like ‘‘socket,’’ ‘‘light bulb’’ and ‘‘electrician’’ recur in his paintings.)

Almost twenty years ago, at the recommendation of a caseworker at his residential program, Dan started working out of Creative Growth Art Center. Founded in 1974 by a psychologist and an educator in their Berkeley garage, Creative Growth now provides studio space and gallery representation for more than 160 artists with physical, mental, and developmental disabilities.

With the guidance of staffers at Creative Growth, Dan’s scrap paper drawings evolved into wall-sized paintings, which eventually made their way into the elite reaches of the fine art world. Now, Dan is one of the best-known artists working out of Creative Growth. His work is included in the permanent collection of the Museum of Modern Art and the Smithsonian American Art Museum. He’s had solo exhibitions at renowned galleries like Ricco Maresca, Galerie Christian Berst, Paris, and White Columns, New York. In a collaboration with Creative Growth Dan’s marker drawings even found their way into Vans stores as a series of unique limited-edition skate sneakers. His works sometimes sell for tens of thousands of dollars apiece.

Miller’s paintings often seem to deconstruct language.

Dan’s dense tangles of dark lines sometimes recall Cy Twombly’s demented cursive, and his scrawled phrases echo Jean-Michel Basquiat’s graffiti-inflected compositions. (“Rocketship pain,” reads one painting, in dripping black letters. “COFFEE COFFEE COFFEE,” says another. “ROOF HOUSE CARPENTER ELECTRICIAN” reads another, inside a childlike line drawing of a house with a pointed roof.) But any apparent stylistic mimicry is coincidental: Like most of his fellow Creative Growth artists, Dan never formally studied art. Instead, he works from what seems like an intense physical compulsion: Drawing seems a requisite bodily function, an instinct it would be unwise to suppress.

“He really doesn’t like to be without something to work on,” Kathleen says. “He’s always drawing. Because he works so much, things really have a magisterial mark.” Watching Dan work, you get the sense that, if the paper supply were to run out, momentum might propel him to start drawing on the surface of the table, the floor, the walls. “When he comes over, I know my pens and paper of any kind are subject to being hijacked,” Cara says. “We’ve learned to get our pens and regular paper in bulk from Costco. I make sure to have some stocked at all times.”

Photo: Hannah Hughes

Contemporary art critics, gallerists, and psychologists of creativity have thoroughly expounded on the significance of Dan’s work, which, according to Bay-Area poet Kevin Killian, “achieves a clattering poetry of infinite discrimination.” Some comment on how his text-based paintings appear to deconstruct language; others speculate on the level of intentionality behind the artist’s methods. But as with any art worth looking at, his practice contains a big element of mystery, sometimes best left unspoiled by over-analysis.

“His work kind of speaks for itself,” Cara says. “It’s still difficult to really know what is happening in his head and heart, other than the basic things. It must be so hard for him to not be able to tell us things, to express what he is feeling and to tell us what he wants, aside from some of the basic things in life. I do believe that he has the desire to connect with people and to express himself.”

Art has helped him do that: “Creative Growth is the key-master that opened some of those doors for him. Danny’s life and the challenges he faces go well beyond what most people see,” Cara says. “Creative Growth and the people in it are some of the best parts of Danny’s life. That, and hamburgers. He loves hamburgers.”


This is part four of four of Folks’ series of profiles of some of the amazing artists at Oakland’s Creative Growth Arts Center, which serves artists with developmental, mental and physical disabilities.

Profiles

The Illustrated World Of An Autistic Superhero-Artist

Ray Vickers' one-of-a-kind comics, which feature teddy bear ninjas and sword-wielding bunny superheroes, have become highly-prized by art collectors. But for Ray, they're a way of making sense of the world.

Wearing a scorpion suspended in a glow-in-the-dark pendant around his neck, artist Ray Vickers sketches a picture of a rabbit wielding a sword made out of a carrot and tells me the legend of his own birth: “I was born with a tail, and with clothes on,” he says. “Red boxers, a white t-shirt, and a tattoo that said ‘Don’t Fuck With the Baby.’”

Coloring the carrot-sword orange, Ray tells me he can time-travel, that he’s Albert Einstein’s stepson, that he only ages once every 300 years. When he was a kid, he says, his tail let him hang and swing from things, until the fateful day it was bitten off by a pack of rabid dogs: “May it rest in peace,” he says.

As one of 160 artists working out of Creative Growth Art Center—a nonprofit that provides studio space and resources for artists with developmental and physical disabilities in Oakland, California—Ray channels his wild imagination and sharp surrealist humor into drawing.

“Art helps me with my anxiety,” says Ray, 29. “It helps me to not focus on the stuff I’m going through. It helps me escape reality. I like to live in my own world twenty-four-seven. You can’t get in trouble if you live in your own world.”

Photo by Hannah Hughes

“Art helps me with my anxiety… It helps me to not focus on the stuff I’m going through.”

The illustrated world Ray has created since joining Creative Growth in 2009 is filled with anthropomorphic rabbit-heroes and teddy bear-villains, pop culture icons like Captain America, and graphic motifs like eyeballs, eight-balls, and arrows.

As a comic book-obsessed student at Oakland’s Stonehurst Elementary School—which he describes as “H-E-double hockey sticks”—Ray often drew superheroes while bored in class.

“When I was young, but old enough to understand, my mom explained what I had: Autism, Asperger’s, dyslexia, ADHD,” he says. “We’re not stupid, we just learn differently than others. I always knew I was different, but didn’t know I could make money selling art.”

A page from “Newcha’s Revenge Against Bunnies Bunny Revenger”

Growing up in southeast Oakland in the nineties, Ray often saw the impulse to “escape reality” play out in drug and alcohol abuse. Having witnessed the toll this took on his community, he swore he’d “never smoke, drink, or vape.” Instead, he sought escape through reading DC and Marvel Comics, watching action movies, volunteering at the Oakland Zoo, and attending cosplay and toy conventions. “Toys are my drug,” he says, showing photos of his vast collection of action figures.

As a teenager, when he wasn’t attending Richmond Educational Learning Center, studying Independent Living Skills at Alameda College, or working as a handyman with his cousin, Ray “was just chilling constantly at home with [his] leopard gecko, watching Spiderman cartoons from the eighties.”

It wasn’t until 2009, when his case manager referred him to Creative Growth, that Ray found the resources he needed to develop his art practice. Superhero doodles soon evolved into works that have been shown in established galleries and major art fairs, including the NADA Art Fair in Miami and the Outsider Art Fair in New York.

“I always knew I was different, but didn’t know I could make money selling art.”

At Creative Growth one morning, Ray works alone in a quiet back room of the former auto-repair shop, drawing with Sharpie, listening to Nine Inch Nails on headphones. He describes his work-in-progress: “This rabbit’s looking at his carrot sword, trying to decide if he’s gonna kill the teddy bears,” he says. “The teddy bears killed his family and friends, because they were discriminating. Now he’s trying to decide what’s next in life.”

Another page from “Newcha’s Revenge Against Bunnies Bunny Revenger”

In recent years, Ray’s drawings of dead rabbits have earned something of a cult following. “He drew a dead rabbit one day, people loved it, and it sold very quickly,” Creative Growth Studio Manager Matt Dostal says. “It became a motif for him. Now he does these rabbits with carrot samurai swords beheading stuffed animals, a lot of funny comic violence.” In 2015, Ray’s series “Newcha’s Revenge Against Bunnies Bunny Revenger” was shown in a group exhibition at the renowned Fraenkel Gallery, curated by artist Katy Grannan.

In April, in preparation for Creative Growth’s annual fashion show and fundraiser, Ray spent months crafting an army-green suit with a matching mask and gauntlets made from shin guards, plus a bow and a quiver for arrows. This costume transformed him into Green Arrow, a superhero from the world of DC Comics. As Green Arrow, “I try to help others, save the city,” Ray says. “Fighting crime, beating up bad people.”

At the sold-out fashion show, called “Beyond Trend,” a crowd gathered around a runway festooned in paper flowers. Artists strutted down the catwalk, modeling handmade Frankenstein masks, shrinky-dink jewelry, pom-pom-covered shawls, and sparkly tinsel headdresses. When Ray emerged as Green Arrow, cheers erupted and he struck a fierce pose, drawing back his bow and aiming the arrow into the crowd.

“He looked so confident that nearly everyone in the audience instinctively flinched, if not full-out ducked,” says Creative Growth staffer Jessica Daniel. “Of course, he didn’t shoot the arrow— it wasn’t a real arrow, anyway—but he was pretty proud of the reaction.”

Photo: Hannah Hughes

Superheroes influence Ray’s real-world behavior, not just his art. He often rescues stray dogs he finds in his neighborhood. While skateboarding, he found an American bulldog on the side of the road, “looking really dehydrated.” He brought her home, named her Scuttles, and fed her plenty: “Now she’s fat.” Scuttles has two adopted siblings: a rescued Newfoundland named Ace and a bearded dragon named Hero.

“Ray is one of the most caring, sensitive, empathetic people I know,” Matt says. Superhero persona aside, “he couldn’t just see a dog looking hungry on the street and leave it there.”

But Ray doesn’t consider his empathy a superpower. “I don’t have any powers in my world,” he claims. Given the choice to have any superpower, “I would probably pick super-strength, so I could pick up literally anything,” he says, spinning his fidget-spinner. “If I was walking down the street one night and saw someone trying to kidnap somebody, I could just stop their car with my hand and rip their tire off. I can see it now.” He cocks his head to the side and gazes into the distance.

“When I daydream,” he explains, “I tip my head a little to the left.”


This is part two of four of Folks’ series of profiles of some of the amazing artists at Oakland’s Creative Growth Arts Center, which serves artists with developmental, mental and physical disabilities.

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 Uncategorized

Changing Ideas About Autism In The Developing World

Mary Amoah and her beautiful daughter Renata are challenging preconceptions about what it means to be normal in the African nation of Ghana.

Mary Amoah once thought witchcraft was behind her daughter Renata’s silence and odd behavior.

The Ghanaian mother said she did what any other mother like her would do – she prayed, she tried different ways to lift the ‘curse,’ and then she attempted to deny there was a problem.

Renata Kuffour was fine as a baby, as a toddler she started speaking a few words, but then, just before she was three, they disappeared. Mary, a teacher of 13 years, started to worry. She left her job and started trying to find out what was wrong with her daughter.

“She would hardly look at us. She had very poor eye contact she would want to play by herself, running in circles or spinning items…she would stare at her hand constantly,” Mary recalls, speaking from the family home in Accra, the capital city of the African nation of Ghana.

Renata wasn’t potty-trained,  so she couldn’t go to school. Mary took her to different hospitals but was always told her daughter just had delayed development.

Renata and her mother share a smile of understanding.

Renata and her mother share a smile of understanding.

She wouldn’t sleep, instead she would stay up singing. “That actually made me believe it was actually something to do with witchcraft,” Mary says. “Why would a child talk to herself, sing to herself, if she didn’t want to interact? Sometimes she might recite prayers but not really connecting with you, those things made me believe that it was probably something to do with spiritual forces.”

Acting on this belief, a desperate Mary took the advice of a woman who told her she could help her child by going to a market at the end of the day and collecting food scraps to cook for her. The woman told her doing this would mean Renata’s spiritual destiny would be safe, essentially lifting a curse off her.

“I am educated,” Mary says.”[But] I believed all these things and did [them].”

Why would a child talk to herself, sing to herself, if she didn’t want to interact?

It wasn’t until a friend visiting from the United States suggested Renata had autism that Mary realized what was happening with her five-year-old. She joined 52 different groups on Facebook to learn about the condition, which often results in delayed development and impaired social interaction. She also began to speak to other mothers with autistic children. It opened Mary’s eyes. In Ghana, she realized there was a vast population of undiagnosed autistic children, just like her daughter. 

It wasn’t easy being told her only daughter might not be able to work, that she may need help for the rest of her life, Mary recalls. But, unlike many other families in Ghana where those with disabilities are hidden or rejected, Mary decided to take action. She wanted her daughter to be able to be helped and accepted by Ghana’s conservative society.

In order to support her daughter and other children like her, nine years ago, Mary started working at a support center in Accra for children with speech and language difficulties, like Renata.

The center supports children with a range of speech or communication issues, taking in children with disabilities like autism, Down Syndrome, cerebral palsy or hearing impairments, for example.

Renata plays with her mother, Mary.

Renata plays with her mother, Mary.

As the center coordinator, Mary and her colleagues advocate to bring parents together to encourage them, and let them know that as difficult as things may be “it’s not a dead-end situation”.

This was a lesson she learned in the USA, when she was offered a place on a program for parents of autistic children at the Autism Treatment Center of AmericaWhile she got a scholarship to attend the Massachusetts center in 2013,  friends and family rallied together to pay for her airline ticket. The program taught her autism isn’t a ‘dead-end’ diagnosis, and that the parent is an autistic child’s best resource. She also met other parents in the same boat who she can still call on for  support and advice.

Coming back from the program she was inspired to take on its messages, and share them with other parents. “If the parent understands the condition, they are in a better condition to support their kids,” says Mary.

With all the support, love and work with Renata, now 13, she can sit quietly and follow her parent’s simple directions.

Mary calls her over for a kiss, and she obliges, then goes back to her seat. It’s her favorite spot, because the foam has compressed where she has sat over the years, allowing her to literally leave her mark on the space. 

Every now and then, Renata — now a beautiful teenager with big eyes and a warm smile —  will start humming, and that hum will build into a song. She will laugh, bounce in her seat, and then get up to wander into the next room, or spin around in a circle.

Mary watches on, smiling. “If she’s happy, I’m happy,” she says.

Renata and her family.

Renata and her family.

In most ways, Renata’s family embodies what Mary and the center advocate to those who have children with communication difficulties: the whole family is involved and responsible for her.

Mary’s husband, Benjamin Kuffour, is a teacher at a boarding school in Accra. The family lives in a large house on the school campus. The lanes are lined with trees and the family has their own large, tranquil backyard.

Renata’s older brothers, Charles, 18 and Emmanuel, 16, will take her on daily walks, while the family takes turns taking her to church. They also support her in her specialized diet -gluten and casein- free. She was put on the diet in 2013 and since then it has helped with Renata’s concentration and stabilizing her moods, she now sleeps well and is a lot calmer, Mary says.

Like many teenagers, Renata can be a fussy eater, Mary says. But she eats a lot of rice, vegetables, soup, chicken, and fish. She’s even starting to like fruits. “Once she sees every member of the family eating the same thing, she is motivated to try it,” says Mary.

Renata likes to run in circles, which can make people dizzy to watch. Still, the family likes to join in occasionally. “As long as it makes her happy, and she is not injuring herself, that’s fine with us,” Mary says.

Renata's family portrait, amongst the other women of her family.

Renata’s family portrait, amongst the other women of her family.

When she was younger, she didn’t like wearing clothes, which meant they could not take her out. But the family worked hard to get her used to clothing. She went through a stage of only wanting to wear tight things, so Mary dressed her in swimsuits. With sensory therapy–in other words, getting Renata used to things touching her body–she now wears glittery sandals and bold, African prints.

It’s important to Mary to dress her well, because it’s a way to project that her daughter is a person, not a disability.

“There was never a point where we saw her as a lesser person among us,” Mary says. “We have always cherished Renata, and supported her in any way we can.”

Aside from helping Renata with her day-to-day needs, Mary is focused on educating people on autism, where the condition has considerable stigma. Because she is not physically disabled, people struggle to understand why Renata is the way she is.

“That was one of the most challenging things we had to deal with,” Mary explains. “In Ghana, I think people are more used to ‘traditional’ disabilities. But when they have a child with autism and there is nothing to show on the outside, people don’t see it as a disability.”

In July, Mary took Renata to a playground, where Renata showed how happy she was by running in circles. Pleased with Renata wanting to play, Mary went to join her, grabbing her hands and playing ring-around-the-rosey. “Everyone went silent,” Mary remembers. Mothers in Ghana just do not play with their teenage daughters like that.

Renata’s autistic, but that is not all there is to her.

She explained to the shocked parents looking at her that Renata was autistic. As they left, one of the mothers confided to Mary that she had a child like Renata, but that she couldn’t handle him. When she brought her other children out to play, she left her autistic child at home.

It’s this stigma, this sense of hopelessness, that leads Mary to tell anyone who will listen about her “beautiful, lovely” daughter. She documents Renata’s life and their journey together on an open Facebook page.

Renata’s autistic, but that is not all there is to her.