Disability Visibility

It’s not every day you get to read an essay by an author who writes so candidly about their writing process and their disability, but that’s exactly what this fascinating essay by Lyn Miller-Lachmann, author of “Gringolandia” and the forthcoming “Rogue,” treats us to. If you or anyone you know needs a little compassion in their lives (and who doesn’t?), this essay is required reading!

By Lyn Miller-Lachmann

In my young adult novel “Gringolandia,” the father of my protagonist, Daniel Aguilar, has joined his family in exile in the United States after nearly six years of imprisonment and torture under the dictatorship of General Augusto Pinochet in Chile. But Daniel’s father, Marcelo, is not the same person that the teenager remembers. His years in prison have damaged him both physically and emotionally, and he has become what we would consider “disabled.”

A former athlete and journalist, Marcelo knows that the world doesn’t make room for those who can’t keep up. At one point, Daniel’s mother says, “He’s scared that because of his injury, he can’t write anymore. And if he can’t write, he says he’s worthless.” Later, when he is about to embark on a mission that a friend considers suicidal, Marcelo tells his friend, “there’s no place for me here.”

In the novel, Daniel must learn to accept his father for who he has become, and to convince his father that in spite of his physical limitations he still has a role to play. It’s a tough job for a seventeen year old who wants mainly to forget the past and enjoy his new life in the United States.

Although the situation in “Gringolandia” didn’t happen to me—it did happen to some people I know—I have experienced the same feelings of marginalization and invisibility as Marcelo because of a disability.

Growing up, I always knew that I was different from the other children. I had trouble talking to them, following class rules, taking my turn at games, and above all, making friends. I cried almost every day and frequently got into physical fights with boys as well as with other girls. On the other hand, I had a photographic memory and loved books, especially books about history and science. I read textbooks and encyclopedias for fun. When I wasn’t being a magnet for bullies, I sat alone and read or made up stories in my mind. In first grade, I made up an entire classroom of children—twenty-four in all—and decided who was friends with whom, who was a good student, and who made trouble for the teacher. That is when I began my journey as a writer.

In those days, the diagnosis of Asperger’s Syndrome didn’t exist, but from time to time I overheard the words “borderline autistic.” My mother brought me to doctors who gave me tests. When I was in first grade, she had me meet with a woman who talked to me while playing board games, and when I was in eighth grade she signed me up for charm school (where I skipped out halfway to eat ice cream and where, apparently, nobody noticed my absence).

I received my diagnosis of Asperger’s as an adult, at a time of growing awareness of and research into this condition considered to be a mild form of autism. It helped me to understand myself, my past, and my connection to the character of Marcelo and to the struggles of a family coming to terms with a member who has become disabled. At that time, however, I’d never written a novel in which the character with the disability served as the protagonist, just as I’d never written a novel with a young character based on myself.

I never wrote an autobiographical character because it was much too painful. I didn’t want to revisit the bullying, my isolation, and above all, my own strange behavior that turned me into an outcast. After all, I had overcome many of my challenges. I had married and raised two children, edited a magazine for sixteen years, and after two decades of struggle, got a YA novel published to good reviews and major awards and distinctions.  But as I met other people—young people and adults—with Asperger’s, I realized that I needed to write my story, and to make a young person with disabilities my central character. Not a secondary character or one on the margins. The main character.

As a student in the Writing for Children & Young Adults program at Vermont College of Fine Arts, I explored other novels that featured main characters with disabilities. I wrote my critical thesis on creating complex, likable YA protagonists with disabilities and used six award-winning novels as examples—Libba Bray’s “Going Bovine,” Benjamin Alire Saenz’s “Last Night I Sang to the Monster,” Ginny Rorby’s “Hurt Go Happy,” Geraldine McCaughrean’s “The White Darkness,” Jordan Sonnenblick’s “After Ever After,” and Francisco X. Stork’s “Marcelo in the Real World.” In my graduating lecture I offered advice to other writers who seek to include major characters with disabilities in their novels.

More importantly, I used this time, and the mentoring offered by my advisors An Na and Jane Kurtz, to write my own story of a teenage girl with Asperger’s—a girl like me—who would do anything to have a friend. The novel, “Rogue,” will be published by Penguin in the summer of 2013. It begins with an incident that happened to me in middle school. Believing that sitting at the popular girls’ table would make me one of them, I set my lunch tray on the table, but before I could sit down, one of the other girls shoved my tray, with my lunch, to the floor. I remember crying and everyone making fun of me, and the monitors doing nothing to get me a new lunch or punish the perpetrators. In “Rogue,” my protagonist, Kiara Thornton-Delgado, picks up the tray and slams it into the face of the girl who pushed it onto the floor. For that act, which I wish I could have done (my parents were far stricter than Kiara’s and would have severely punished me), Kiara is suspended from school for the rest of the year.

Kiara’s quest for friendship leads her to another outsider—a younger boy who has just moved into the neighborhood, whose horrible secret about his own family’s “business” keeps him at arm’s length from his classmates. He and his parents draw in the unsuspecting Kiara and attempt to take advantage of her in a way similar to what happened to me when I was in high school and, desperate to be popular, unwittingly served as a go-between for my school’s drug dealers. When I found out that the candies my classmates picked up from a group of teens from the other side of town were in fact LSD, I had to choose between continuing to host my new-found friends at the meeting place, a community radio station where I had a regular program, or asking them to leave. If I let them stay, I would belong to a popular group for the first time in my life, but at the expense of abetting their drug use and putting myself at risk. I also came to realize that the popular kids maybe didn’t want to be friends with me because they liked me but because they could use me to get things that they wanted. So in the end, I asked my classmates to leave. I decided I would not do something I knew was wrong just to have friends. But I cried a lot afterward because I also missed the attention and companionship. Kiara faces a similar dilemma, her values versus her need to belong—somewhere, anywhere.

I can’t say that after that incident, I always did the right thing, or successfully stood up to bullies. In some ways, I have been very successful, but I’ve also made mistakes, gotten taken advantage of, damaged relationships due to misunderstandings, or broken professional “rules” that set back my career. Those who write characters with disabilities are tempted to look for triumphant endings that often include some kind of cure. Disabilities usually cannot be cured or wished away, however. I hope for understanding and a chance to contribute, using my unique gifts and perspective on the world. Writing “Rogue” was in many ways a painful experience for me, but I did it because I wanted something good to come out of my struggles as a teenager.

Persons with disabilities are pretty much like everyone else in wanting to belong, to contribute, and to be appreciated and loved. When a person with a disability gets left out, it hurts that person, but the community also loses the unique perspective of someone whose difference may lead to a unique way of looking at things and solving problems. Kiara is obsessed with the X-Men (especially the female X-Man Rogue who cannot touch or be touched) because they are mutants whose special powers allow them to defeat the forces of evil and save civilization. She believes that she, too, may have a special power that she can use for good. And in “Gringolandia” Daniel’s father finds a way to use his decrepit appearance and physical limitations to spy on the dictator’s forces and smuggle documents out of the country.
As a writer with Asperger’s, I believe it is crucial to portray major characters with disabilities fully and skillfully. Stories provide an opportunity for all young readers to experience the world from the perspectives of peers with disabilities. Young people who have special needs should not see themselves as invisible, subordinate, or reduced to a set of stereotyped symptoms and traits; rather, stories should present models of persons with disabilities who live life to the fullest, gain the respect of classmates, stand up to bullying, abuse, and injustice, and serve as agents of transformation to a more humane and inclusive world.


Lyn Miller-Lachmann is the former editor-in-chief of MultiCultural Review and the author of resources for educators and fiction for teens. Her young adult novel “Gringolandia” (Curbstone Press/Northwestern University Press, 2009), about a teenage refugee from Chile coming to terms with his father’s imprisonment and torture under the Pinochet dictatorship, was a 2010 ALA Best Book for Young Adults and received an Américas Award Honorable Mention from the Consortium of Latin American Studies Programs. Her most recent novel, “Rogue” (Penguin/Nancy Paulsen Books, 2013), portrays an eighth grader with undiagnosed Asperger’s syndrome and an X-Men obsession, whose struggle to befriend another outcast after being expelled from school leads her to some difficult and dangerous choices.

Having been a DJ on and off since high school, Lyn is currently the assistant host of a bilingual program of Latin American and Spanish music, poetry, and history on WRPI-FM and a part-time seventh grade teacher. She is a graduate of the Writing for Children & Young Adults program at Vermont College of Fine Arts and reviews children’s and young adult books on social justice themes for The Pirate Tree (www.thepiratetree.com). Currently, she is working on a young adult novel and a middle grade novel. For more information, visit Lyn’s website, www.lynmillerlachmann.fatcow.com.

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8 Comments Post a Comment
  1. Linda W says:

    Brilliant, Lyn. Loved your candid, heartfelt essay. A friend has a daughter with Asperger’s. Beth has felt invisible and very frustrated. I think she’d be encouraged by your story.

  2. Thank you for letting me know about your friend’s daughter, Beth. Having examples of people with Asperger’s and other autism spectrum disorders who’ve become successful can go a long way toward helping young people on the spectrum find their “special power.” In my novel, Temple Grandin serves as an example and inspiration for Kiara, even though Kiara’s interests have nothing to do with animals. If I’d had someone like that to look up to when I was growing up, it would have made a huge difference for me, though I probably would have tried to follow more closely in Temple Grandin’s footsteps and studied biology rather than languages and literature.

  3. Brava! I’m very much looking foward to reading “Rogue,” Lyn.

    While I am able-bodied, my daughter is multiply disabled. Though she has wants and dreams and desires typical of any 13-year-old girl, it’s often difficult for others to get past her wheelchair and her hearing aid. My own YA novel, Gadget Girl (forthcoming in 2013 from GemmaMedia) features a main character with cerebral palsy. I fervently hope that she, too, will serve as an agent “of transformation to a more humane and inclusive world.”

  4. Thank you for commenting, Suzanne! I look forward to reading Gadget Girl as well.

  5. Molly says:

    Thanks for sharing your story here, and in your novel. Can’t wait to read Rogue!

  6. Bullying is NEVER ok and is happening between people within the same subgroup!

  7. This is amazing. I can’t wait to read Rogue and Gadget Girl and the half dozen others mentioned. I started writing about characters with disabilities because I wanted heroes I could relate to. I’m glad to see I’m not the only one. And I hate when an author “heals” a character with a disability at the end of the book. Somehow that cheapens their suffering. And healing doesn’t always happen in real life. What about the rest of us that are left with the disability when the book is closed?

  8. […] to read the essay Lyn Miller-Lachmann wrote for Young Adult Review Network (YARN) talking about the origins of her book Rogue and her own experiences having Asperger’s Syndrome.  This is an amazing piece that helps really personalize what it feels like to have […]

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