Disability Literature: The Rise of D Lit in Publishing

By Belo Cipriani

Four rows of colorful books neatly arranged in a bookcase.

On a chilly November afternoon in 2008, I tapped my white cane down Shattuck Avenue in Berkeley, California and entered Pegasus Books. At that time, I had only been blind for a year, and often found a lot of my questions about disability answered by disability stories.

A charismatic woman greeted me, and I explained I was looking for books written by people with disabilities. “You want Crip Lit,” she said, helping me walk to another section of the store.

While Crip Lit allowed me to put a name to the genre of books I wanted to read, I quickly noted that it was a term not used by everyone in the disability community. Moreover, it was a label the publishing and arts communities did not want to use. Thus, I began to use D Lit to describe narratives about disability that were written by authors with disabilities. Now, 10 years later, I am the founder of Oleb Books — a publisher of D Lit.

But whether someone calls it Crip or D Lit, no one can ignore this genre is growing. It is now a literary category of its own, and several organizations are helping to drive it.

Deaf and gay writer Raymond Luczak is the founder of Squares and Rebels — a queer and disability press based out of Minneapolis. He said that he started his publishing house because he felt as though it was time for newer disability and queer titles.

“I’d noticed that more than a decade had passed since Bob Guter and John R. Killacky’s ‘Queer Crips: Disabled Gay Men and Their Stories’ was published. Wasn’t it time for a new queer disability anthology? Indeed it was,” said Luczak.

Luczak went on to publish “QDA: A Queer Disability Anthology,” as well as several other titles, through Squares and Rebels — helping many LGBTQ and disabled writers find an audience. When it comes to the publishing industry at large, Luczak believes disability is not considered chic; he even had a literary agent tell him it does not sell. Still, he believes it is important.

“Disability challenges the many ableist assumptions about the world we all live in, and in order for the world to become a better place for everyone, we need more stories about disability out there,” he said.

Queer and disability advocate Corbett O’Toole co-founded Reclamation Press — a publisher exclusively publishing authors who identify as having at least one disability. Like Luczak, O’Toole recognized there was a need for more disability books.

“Although one in five people living in the U.S. have a disability, less than 0.003 percent (one-third of 1 percent) of the 22 million books sold on Amazon are related to disability. There is a huge need for books by disabled people where we can share our ideas in both fiction and nonfiction forms,” O’Toole said.

“We know,” continued O’Toole, “that there are many people with disabilities writing extraordinary works. They might be crafting a science fiction world with a genderqueer, autistic lead, such as ‘Troubleshooting’ by Selene dePackh, or exploring ways to nurture ourselves while doing social justice work, such as ‘Sustaining Spirit’ by Naomi Ortiz.”

Since its launch in 2017, Reclamation Press has published three books with the help of donations, and has a list of projects it is seeking funding for on its site at www.reclapress.com.

Katherine Schneider, Ph.D., founded the Schneider Family Book Awards, with the American Library Association, to celebrate disability in children’s literature. The award came about as a result of her own experiences growing up as a blind child in the mid-20th century.

“In the 1950s, when I was in grade school, the only media mentions of blind people were of Helen Keller, Louis Braille, and the seven blind men who went to see the elephant — other disabilities fared no better,” she said, referring to the parable. “Fifty years later, the situation had improved somewhat. But the stories were often one-dimensional, still with an inspirational character with a disability overcoming the disability as the plot line. Since I established these awards with the American Library Association 15 years ago, the number and quality of books has greatly improved.”

Schneider pointed out that able-bodied writers do not always get disabled characters right.

“I think,” she said, “they sometimes graft their new-found knowledge of a disability onto the character, rather than having a character whose identity includes the disability. For example, they make sure the blind child has a talking computer, but don’t have the depth of understanding to know that emoji are sometimes misread, websites are not always accessible, workarounds have to be found, etc.”

In 2009, Laura Perna and Susie Angel launched the disability-writing contest Pen 2 Paper (P2P), as an arts program of the Coalition of Texans with Disabilities. The competition accepts submissions of fiction, memoir, and poetry, and has grown into a global forum for writers with disabilities. Each year, hundreds of writers submit their work for a chance to win a grand prize, which in 2018 was $500. In addition, the contests give writers a chance to share their work with a large group of readers who are looking for disability stories.

“People who are able-bodied (ABs),” said Angel, “often think that people with disabilities are suffering through life and they aren’t capable of contributing to society. Through reading stories written about, and by, people with disabilities, ABs can learn how people with disabilities see themselves, and realize that there aren’t as many differences between the two groups. …”

Angel believes not every disability story is meant to teach anything or benefit anyone.

“Sometimes disability writing has no other purpose than to entertain,” she said.

Now, people can use the hashtag #DLit to share their favorite disability books on social media.

Belo Cipriani is an award-winning author and prize-winning journalist. His new book, “Firsts: Coming of Age Stories by People with Disabilities,” is available through every online retailer. Learn more at www.belocipriani.com.

3-Step Reading Comprehension Guide to Reading Like a Writer

By Julie Webb

A photo of a man holding a pair of glasses, thoughtfully looking at an open book in his lap.

Many people sound like strong readers because they read accurately and with good expression. Yet when asked to discuss and interpret what they read, these readers aren’t sure where to begin. Their inner thoughts churn, they pause, and panic sets in. They ask themselves, what did I just read? What was the text about? Why can’t I remember?

The difficulties these readers face can go unnoticed because their strengths do a remarkable job of masking their challenges. As a result, some readers aren’t clear as to why we read in the first place. The purpose of reading isn’t to call out words smoothly and efficiently. Instead, reading is a meaning making activity that helps us interpret the world around us. In this way, reading is similar to writing, in which the purpose is to share with others our thoughts, experiences, and interpretations, so that this meaning can spread. In other words, we read to understand, and we write to be understood.

Reading as writers do is different than a surface level understanding of a text, in which a reader does a basic recall of the facts and details. Readers who approach texts with a writer’s eye can see beyond those facts and details to uncover the importance behind the words.

If you’re interested in improving your reading comprehension, ask yourself three questions: What? How? Why?

Step 1: What is the content of the text I’m reading?

Strong readers engage the first layer of understanding by addressing the “what,” or the content, of the text. Not only should you think about the information presented in the text, but also how this information relates to what you already know. Consider how the text’s content connects with your own experiences, with what’s going on in the world, and with other texts you’ve read. Ask yourself:

What does the text say and what does it make me think about?

What does the author want me to know?

It’s also wise to note what’s missing from the text. What information did the author leave out? How would this information influence you as the reader?

Step 2: How did the author craft the text?

Thinking about “how” the text works is another way to consider the author’s craft. Craft refers to the tools and techniques the author employs when creating the piece of writing. Examples of craft include how authors structure their arguments, how they use metaphors in their descriptions, or how they use hyperbole to make a point. To improve your comprehension, notice how the author constructs the text and reflect on the choices they made. Ask yourself:

How is this text put together and how does this impact my understanding?

How did the author communicate their message and was it effective?

Considering the effectiveness of the text’s structure helps readers transition to analyzing and critiquing the reading. This represents thinking beyond the text, and demonstrates advanced reading comprehension.

Step 3: Why did the author write the text?

Asking “why” helps readers think about the deeper meaning behind the language and content. Writers often include layers of meaning and expect readers to infer in order to more deeply connect with and understand the text. Asking “why” helps you tap into the author’s purpose for the piece. Ask yourself:

Why does this text matter?

Why should I care?

Remember, authors are influenced by the time and place in which a text is written. So the context in which a text is created, and also when the text is read, impact how it’s perceived by readers.

In today’s climate of fake news and the overwhelming amount of content found online, our ability to understand what we read is as important as ever. Next time you realize you’ve forgotten the paragraph you just read, try asking yourself: What? How? Why? Initiating these three steps can make a big difference to your reading success.

Julie Webb is a National Board Certified Teacher of Literacy and a former Reading Specialist. She is a national presenter and literacy coach who works with educators to improve literacy instruction in classrooms across the U.S. Julie connects with educators online through her website LitCentric.com.

Meet Author Andrew Gurza: Shining a Bright Light on Sex and Disability

By Caitlin Hernandez

Oleb Books author Andrew Gurza is sitting in his wheelchair, wearing a grey dress shirt, smiling at the camera.

Oleb Books author Andrew Gurza, a self-identified “queer cripple,” not only writes, speaks, and tweets about his experiences, but also hosts a podcast about disability and has become well-known for his ability to spread awareness about the intersection between the queer and disabled communities.

Having earned his masters degree in legal studies from Carleton University in 2013, Gurza, who has cerebral palsy, switched from writing stories and imitative newspaper articles as a child to writing about his experiences as a man who is both queer and disabled. He views himself as a “Cripple Content Creator” and encourages both his readers and podcast audiences to think outside the box and attempt to examine disability and sexuality through the lens of those living the experience. “I love bringing people into (my) world and sharing perspectives around disability that we don’t often talk about,” he says.

Growing up, Gurza felt supported by his family, who ensured he was able to participate in any and all activities that interested him. His mother was his strongest and most steadfast supporter and advocate. “She’s been my rock,” Gurza says.

Though his childhood was fairly typical, Gurza stated his disability did pose its own unique challenges. “It was hard for me to make friends as a disabled kid and teen, and, ironically, as a queer, disabled man, that feeling hasn’t necessarily changed.”

In addition to making and listening to podcasts, Gurza is a True Crime fan who also enjoys traveling and exploring.

In his essay for Firsts: Coming of Age Stories by People with Disabilities, “Baring It All,” Gurza takes us back to college life. He shows the reader the ins and outs of navigating gay culture with a disability.

To learn more about author Andrew Gurza, check out his podcast, DisabilityAfterDark, follow him on Twitter at @andrewgurza, and visit his website at www.andrewgurza.com.

A northern California native, Caitlin Hernandez writes novels for teens and tweens, as well as nonfiction prose pieces. Occasionally, she writes songs, plays, and poems. She was a Lambda Literary fellow in 2015, and recently received mentorships through Writing In The Margins and We Need Diverse Books.
Caitlin lives in San Francisco and teaches fifth and sixth graders with disabilities.

Tips for Writing with a Brain-Related Disability

By Nigel David Kelly

A smartphone, keyboard and notepads and pens, and a set of Apple earbuds are fanned out on a white surface.

A very wise and famous man once wrote a note to a friend: “The man who looks at the world the same way at sixty, as he did at thirty, has wasted thirty years of his life.” That man was Muhammad Ali.

Now I am not 60 yet, though not that far off, but I now look at the world in a very different way than I did 30 years ago. I’d like to say this is due to some epiphany of my own volition, but no, it was forced on me.

Five years ago, I was diagnosed with a brain tumor. It is probably best I didn’t know then how much this would change my life.

One of the things I have learned is that, though you can empathize or sympathize, you really don’t understand another person’s life experience, unless you’ve been through it. We are all limited by our own experience. That is okay.

So what I am about to say applies first and foremost to me. But I hope that someone else may be able to take this and modify it to suit their own circumstances.

Building a tool kit

When I started writing, I was a physical and intellectual dynamo. Now my physical and mental energies are vastly reduced. One big problem is computer time. On a good day, I can only manage minutes in front of a monitor.

So how do I write?

First, there is that great, unmatched (so far) computer: the human brain. Every waking hour, when I am up to it, can be spent thinking about what I want to write.  But I can only retain so much, even if my brain is at its best. Of course I can write it down on a piece of paper, however, what if, like me, you have difficulty writing any more than a couple of sentences before your hand tires and cramps, and your writing resembles something hung on the wall of a modern art gallery?

You can buy a battery-powered voice recorder, or a USB-charged voice recorder, which is much smaller. But someone needs to listen to your ramblings, make sense of them, and type it up. So, this solution, in the end, may turn out to be problematic.

Choosing the right tech

Technology is a great savior! Thirty years ago, when I started working with computers, speech recognition was very poor and impractical. Today, it is amazing. You don’t even have to buy expensive software; you can dictate directly into your smartphone. So if you’re relaxing on the sofa, watching TV, listening to music, enjoying your garden, soaking up some sun rays, or even chatting to a friend, and you have an idea, just get your phone out and talk.

Most publishing houses, magazines, newspapers, and blogs use Microsoft Word as a writing and editing tool. And now, you can get Word on your smartphone. Now I’m not trying to tell you what to buy, just giving an example. You can get MS Office 365 for £59.99 / $79.27 a year, which includes all updates. You can install it on up to four devices and dictate straight into it.

You can use cloud storage to store your recordings, so you can find them on whatever computer you need to use. No need to worry about transferring them here and there.

Building routine

Now, we need to find the best way to incorporate this modern tech into our new altered state.

Like me, I’m sure for most people with disabilities, the biggest issue is energy. I used to think, “Today I’ll do A, B, C, D, E and F.” Now, I may do A and B. If I manage C, it’s a “gold star” day. During the morning, I try to use my computer to work on what I have written/dictated the previous day. The rest of the day I use my smartphone. I keep it with me at all times, as my wife texts from work to make sure I am still vertical.

I just have to accept that my work output is a fraction of what it use to be.

But I appreciate what I can do on a much deeper level, and I like to think the quality of my work has actually improved.

Nigel David Kelly is a writer, published author, public speaker, honors graduate and MENSAN. He has been published by McFarland and Oleb Books. He has contributed to Firsts: Coming of Age Stories by People with Disabilities, which was published by Oleb Books on October 1st 2018. Learn more at www.ndkelly.me.

Meet Attorney and Award-Winning Writer Heidi Johnson-Wright

by David-Elijah Nahmod

Photo of author Heidi Johnson-Wright, wearing a red, short-sleeved top, a colorful scarf and hoop earrings. She's sitting in a wheelchair, smiling.

Heidi Johnson-Wright, author of the leading story in the collection Firsts: Coming Of Age Stories By People With Disabilities, has lived with the complicated effects of rheumatoid arthritis since around the age of 9. The condition made it necessary for her to use a wheelchair and curtailed her ability to perform simple, everyday tasks. When she began college in the 1980s, she needed a caregiver to help her dress and get to class on time. Johnson-Wright quietly accepted her situation, excelling in her studies. She even had a boyfriend.

In “Life with Lexie,” her Firsts contribution, Johnson-Wright recalls her friendship with Lexie, her college caregiver. She also recalls the abuse she withstood at the hands of her own mother, who was unable to deal with the harsh realities of Johnson-Wright’s disability. Johnson-Wright now speaks to us about how this abuse affected her rheumatoid arthritis.

“As is true of many other medical conditions, stress can exacerbate rheumatoid arthritis, making one prone to flairs,” she said. “The more the disease acts up, the faster permanent joint damage occurs. And if you have a condition with chronic pain, anxiety makes the physical sensations of the pain worse. I didn’t learn that until I was in my 30s. No one bothered to tell me that when I was a kid.”

Johnson-Wright noted that when she was a child — in the worst throes of her disease — kids were not treated as full-fledged humans. “The pain of kids was not taken as seriously as that of adult patients,” she said. “It seems incredible now when I think about it, but all the years that I received treatment at what was considered a cutting edge pediatric rheumatology clinic, no one ever asked me how I was managing the pain.”

And because of the nature of their relationship, Johnson-Wright was never able to discuss these issues with her mother. “I don’t remember ever truly having a constructive conversation with my mother,” she recalls. “Not in the sense of two people communicating, truly listening to each other, and respecting each other’s feelings and opinions. Part of that was due to her having what I believe to be borderline personality disorder, and never being able to get beyond being a narcissistic bully. But part of it was due to the generation my parents came from. Children were devalued and were expected to be seen but not heard.”

Johnson-Wright has also faced obstacles in her adult life, such as disability discrimination. “Every time a building, a transit station, or a streetscape is designed with an end user in mind that is the mythical 5-foot, 9-inches, 175-pound, white, non-disabled male, disability discrimination is there,” she pointed out.

She added that she recently saw a statistic which said that less than one percent of housing units in the United States are move-in ready for wheelchair users.

“The other 99 percent require renovations before someone like me could live there,” she said. “Imagine going apartment hunting and knowing that 99 percent of what’s out there will automatically be off limits to you, simply because you have a disability.”

Ride service providers such as Uber and Lyft also do not accommodate people with disabilities, according to Johnson-Wright. “Yet we don’t hear the outrage and disgust,” she said. “That is disability discrimination.”

Johnson-Wright’s disability did not play a role in her becoming an attorney. It’s what her father wanted her to do, and it’s what he was willing to pay for.

“I would love to have been an Egyptologist, or perhaps an art historian,” she said. “I also think it would be amazing to work with animals, perhaps for an animal conservation organization. But on a more practical level, I could see myself as a college literature professor.”

She explains why she chose to share the story of Lexie, her college caregiver.

“It was a profound relationship that took place at a critical juncture in my life,” she said. “We all enjoy reminiscing about our college days, and I simply can’t separate that experience from the relationship I had with Lexie. I also wanted to write about a rite of passage that was perhaps a little less obvious than something like first love or losing one’s virginity.”

And what advice does Johnson-Wright offer to other disabled people?

“Don’t hide, don’t try to pass for non-disabled,” she says. “If someone makes you feel inferior for having a disability, get the hell away from them. Hang out with kind, good hearted, nurturing people. Stay away from manipulators and abusers. Find out what you’re good at, discover your passion, and follow it. Find your disability identity and be proud.”

The anthology Firsts: Coming of Age Stories by People with Disabilities is available now on Amazon, and other retailers.

David-Elijah Nahmod is an award-winning film critic and celebrity interviewer. You can find him on Twitter and on Facebook.
Photo: Carl Kerridge

Meet Author Nigel David Kelly: The Belfast Champion

by Christina Pires

A black and white profile photo of Oleb Books author Nigel David Kelly, a man in his mid-50s with a full, well-trimmed beard.

Before his mid-40s, Oleb Books author Nigel David Kelly — a contributor to Firsts: Coming of Age Stories by People with Disabilities lived by the old Greek saying, “A healthy mind, a healthy body.” Born in Belfast, Ireland, Nigel was a National Champion powerlifter and took pride in maintaining his physical health. He also enjoyed engaging and maintaining a healthy mind, which is why, in 1987, he began his college undergrad studies in computer programming. When asked if that field of study was his first choice, Nigel replied, “I sat a college aptitude test, which showed a high level of analytical ability. This suggested computers, which I’d never touched. I lapped it up, studying for the next 14 years.”

During those 14 years, Nigel said he felt different from those around him, yet could not identify why. That is, until he took the MENSA exam in 1991. “It wasn’t until I passed […] and discovered I have a genius IQ that I knew why I felt different. Talking to others with high IQs, I discovered it is a common feeling.” By 1994, Nigel had met and married Karen, who also worked at the college: she was in the art department, and he was in the computer office. “Dozens of people came in every day. When I heard her voice, something made me turn around. It took weeks to pluck up the courage to ask her out.”

After 26 years of marriage, Karen is, understandably, Nigel’s biggest influence and inspiration. However, following right behind her is Quentin Crisp: a gay writer/actor born and raised in Sutton, England, who died in 1999. Crisp would dye his hair bright red, wore make up and women’s clothes, and was perceived as outlandish in the 1930s. He was not allowed to serve in World War II, because he was deemed unstable by the British military. Quentin was a source of reassurance during a time in Nigel’s life when he struggled with being different from his peers. Nigel recalls, “[…] I saw The Naked Civil Servant, based on Quentin’s autobiography. He taught me it is okay to be different. Don’t worry about what society thinks. Being yourself is the only life worth living. Quentin is my hero.”

In mid-2013, Nigel received a letter from his physician requesting to see him. Once there, the doctor told him, “We found something,” leading Nigel to believe it was cancer. It wasn’t much to his relief, but that relief was short lived as the doctor diagnosed him with an acoustic neuroma, “a form of brain tumor […] that is uncommon, unusual, difficult to explain and understand.” After receiving this news he recalls that, “[…] like an ostrich I buried my head in the sand. I ignored it! Karen was much more freaked out. But she knew how I was dealing with it and went along.” Since then, life has been a constant struggle for Nigel, who only 4 years ago was in prime, physical condition.

There is no form of treatment for acoustic neuroma, so his physicians have placed him on strong antidepressants, painkillers, and sleeping pills. Together, these pills mask the symptoms and attempt to give Nigel some form of comfort in spite of his pain. Since contributing his essay “Dark Clouds” for Oleb Books’ debut title, Firsts, his condition has deteriorated, after having surgery in April 2018. “I used to be able to do anything I wanted, physically and mentally. Now I can’t cut my own lawn!” Nigel cites energy as his key issue, stating that after only two hours of being awake in the morning he quickly becomes tired.

He uses a walking stick to maintain his balance, but to look at him you would never believe anything was amiss. So, Nigel says he understands why those who see him (but don’t know him) believe he is, “[…] just putting it on or exaggerating. Once people get to know me they understand, especially if they witness me falling down or having a seizure!” His employer was another hurdle that Nigel had to clear on top of dealing with his disability. He recalled that they, “[…] just wanted to sack me. They kept telling me my situation was ‘unsustainable.’ Fortunately, a third party went to battle for me and I am now retired on ill health. So I have a pension and we can keep our home.”

Nigel still resides in Belfast with his wife Karen. He will turn 55 years old in October of 2018.

The anthology Firsts: Coming of Age Stories by People with Disabilities is available now on Amazon, and other retailers.

Christina Pires is an essayist who enjoys the simple things in life, like eating candy corn by pumpkin light on a cool Hallow’s Eve. She also loves reading, writing, drawing, painting, sculpting, and singing. You can follow her Facebook page here: https://www.facebook.com/TheCreativeBrewery/

Why a Blind Man Started a Publishing House

A closeup of an open book with fanned pages, on a warm, amber-colored backdrop, featuring the logo for Oleb Books.

I learned to be a writer by being around other writers. Through workshops offered through the San Francisco literary nonprofit Litquake, Meetup.com, and Craigslist, I met other people who had stories to tell and, like myself, were eager to pen their first book. It was at one of those early writing classes that I learned about graduate writing programs, and decided to make the two-year commitment to being a full-time student.

In grad school, I learned how to take in criticism, as well as to write under deadlines. I also discovered I do my best writing in the morning and that poetry does not come to me as easy as prose.

While my Masters in creative writing gave me the tools to start my writing career, a year after completing my degree, I felt as though there was something missing in my writing regimen. It was not until I came across the announcement for the Lambda Literary Fellowship for LGBT writers that I recognized what was missing.

As a Jewish and Latin writer, I found plenty of support in writing groups in and out of class; however, as the only gay dude in my writing program, I did not get much feedback.

My Lambda experience was life-changing. Not only did I begin to understand the importance of having the right advice for my work, it also taught me about the importance of writing in community.

I took the Lambda experience and looked for other writers with disabilities to review my work. It was at this point in my career that I began to better understand the disability narrative, and was able to figure out how I want to write about my blindness.

More often than not, the stories of people with disabilities are told for us, not by us. I am launching Oleb Books because I want to give writers with disability an opportunity to work with editors and publishing professionals with disabilities that will help them to tell their stories.