Award-winning author and pansexual, blind writer Caitlin Hernandez grew up in the 1990s — a time when adaptive technology, such as electronic Braille notetakers, were in their infancy. The web was just budding and digital accessibility was not in the forefront for many organizations.

Likewise, at an early age she discovered that access to characters with disabilities in books was scarce.

“Generally, though,” said Hernandez, “I could only find disabled characters written by disabled authors in nonfiction and memoirs, such as Erik Weihenmayer’s ‘Touch the Top of the World,’ which I read countless times just to find that disability representation.”

While she could find solace in the works of young adult authors like Beverly Cleary, Lois Lowry, Bruce Coville, Judy Blume, Roald Dahl, and J.K. Rowling, in fiction Hernandez often found disabled characters to be horribly inaccurate or vaguely problematic. Today, in 2019, she is happy to see some improvements being made by the publishing world.

“I’m a big young-adult fan — it’s what I love to read and write — and I’m delighted to see that #ownvoices representation of disability is on the rise. I’m currently reading and loving ‘The Silence Between Us,’ by Alison Gervais, and I loved Kody Keplinger’s blind character of color in ‘That’s Not What Happened.'”

But while Hernandez, 29, admits there have been some advances made for disability inclusion in literature, she is also quick to point out there is still some work to be done.

“What we often find, unfortunately, are books which either glorify disability or make it pitiable,” she said. “They’re often written to make non-disabled readers, especially children, feel inspired or overly sympathetic. ‘Wonder’ [by R.J. Palacio] is an example which is still garnering a lot of attention, especially after the movie adaptation, which failed to cast an actor with a facial difference.”

The book is about a child who has a craniofacial condition.

“Simply put,” she continued, “we [people with disabilities] know our experiences best. No matter how much research an author does or how many people they know, they cannot tell a story with as much accuracy, honesty, and heart as we can. It is their responsibility, as an author, to name this truth. This isn’t at all to say that authors should never write outside their own, lived experience; rather, they should use their platform to both acknowledge those marginalized folks who have done the work to educate them, and to amplify the voices of those living in the margins they’re writing about.”

Hernandez currently belongs to a writing group of four blind women — who meet via teleconference — that has proved to be a catalyst for her in many ways.

“They’re each so warm, caring, and accomplished in multiple ways, and I absolutely love having the chance to commiserate with and learn from them, not just about writing, but about both our unique and shared experiences as blind women,” she said.

Caitlin Hernandez will be reading from her work Wednesday, September 25, at 7:30 p.m. at the Notre Dame de Namur University Welcome Center, located at 1500 Ralston Avenue in Belmont, California; Thursday, September 26, at 6 p.m. at the Holy Names University library at 3500 Mountain Boulevard in Oakland; and Monday, September 30, at 7:30 p.m. at Booksmith, 1644 Haight Street in San Francisco.

Support the work of writers with disabilities by making a donation today. Oleb Books is a sponsored project of Springboard for the Arts, a nonprofit arts service organization. Contributions on behalf of Oleb Books may be made payable to Springboard for the Arts and are tax deductible to the extent permitted by law. Click to donate now

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Readers’ Favorite recognizes “Firsts” by Belo Miguel Cipriani in its annual international book award contest, currently available at http://www.amazon.com/gp/product/B07GWYBRMT.

The Readers’ Favorite International Book Award Contest featured thousands of contestants from over a dozen countries, ranging from new independent authors to NYT best-sellers and celebrities.

Readers’ Favorite is one of the largest book review and award contest sites on the Internet. They have earned the respect of renowned publishers like Random House, Simon & Schuster, and Harper Collins, and have received the “Best Websites for Authors” and “Honoring Excellence” awards from the Association of Independent Authors. They are also fully accredited by the BBB (A+ rating), which is a rarity among Book Review and Book Award Contest companies.

We receive thousands of entries from all over the world. Because of these large submission numbers, we are able to break down our contest into 140+ genres, and each genre is judged separately, ensuring that books only compete against books of their same genre for a fairer and more accurate competition. We receive submissions from independent authors, small publishers, and publishing giants such as Random House, HarperCollins and Simon & Schuster, with contestants that range from the first-time, self-published author to New York Times bestsellers like J.A. Jance, James Rollins, and #1 best-selling author Daniel Silva, as well as celebrity authors like Jim Carrey (Bruce Almighty), Henry Winkler (Happy Days), and Eriq La Salle (E.R., Coming to America).

“When the right books are picked as winners we pay attention. We will be spreading the word about Readers’ Favorite.” –Karen A., Editor for Penguin Random House

Readers’ Favorite is proud to announce that “Firsts” by Belo Miguel Cipriani won the Gold Medal in the Non-Fiction – Anthology category.

You can learn more about Belo Miguel Cipriani and “Firsts” at https://readersfavorite.com/book-review/firsts where you can read reviews and the author’s biography, as well as connect with the author directly or through their website and social media pages.

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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

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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 read more of her work here: https://portfolium.com/ChristinaWolfe3

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