Ever wonder where your mind goes during a three-hour surgery sedation? I’m here to tell you I have an exquisite recall of the event. My surgeon begs to differ, but I briefed myself before the propofol ran wild, causing my left arm to freeze before blowing apart.

My manual communication went unnoticed as masked humans sliced new incisions and wrestled out the old implants. I could hear muffled voices discussing the scar tissue of eleven years of wear, just when my cancer was at a crossroads.

I wanted to clean up the room, jigsaw my arm remnants back into the shape of a limb, and drink coffee. I wanted to go swimming at Kepuhi Beach on Molokai, topless, skip my implants atop the water, and let the mermaids play dress up, ready to claim their identity.

That’s when the sea maidens gathered around my bed and took turns reconstructing my arm. Their luminescent eyebrowed tentacles chimed as they swayed around me, never hesitating to moan in a melody so comforting, so soothing, so indicative of their whale gods.

Before the tide subsides, I am welcomed into their nautical world. Do I leave this all behind? The scar-tissued implants, the diminishment of femininity, and the need for caffeine? They’ve transformed my arm into a fin, a sign of acceptance, a vice for survival, how can I not?

—

Want to read more from Suzanne Nielsen? Get your copy of Face Up: A Collection of Outlaw Poems today! Buy now on Amazon

You are also encouraged to listen to Suzanne Nielsen read from her recently published essay from Oleb Books’ latest title, Accessing Parenthood: Stories by and About Parents With Disabilities, during our virtual book launch party, posted on our YouTube channel.

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In the winter of 2018, Belo Miguel Cipriani, publisher of Oleb Books, was looking for a partner organization to co-produce a writing contest for writers with disabilities. To his surprise, many small and large writing competitions were not interested in adding a contest just for writers with disabilities. They also felt that Oleb Books hadn’t reached the maturity they were seeking in a partner.

“Oleb Books was barely a year old,” said Cipriani, “and with only one title to our name, some of the writing centers and communities told me that they preferred to partner with more seasoned presses. They also weren’t keen on a focus on disability writing.”

So when Cipriani got a reply from Laura Perna and Susie Angel, co-organizers of Pen 2 Paper, one of the largest writing contests for writers with disabilities at the time, he was thrilled.

“After a few email exchanges, we had a conference call,” he said. “By the end of the meeting, we were finishing each other’s sentences and had a plan for an essay contest on parenting with a disability.”

Cipriani is quick to note that Susie had two major immediate impacts on his life. First, she helped him feel comfortable with asking someone with a speech impairment to repeat themselves. Second, she helped him understand the dichotomy of writing competitions.

“Susie was key in allowing me to recognize how writing contests put people into two categories: those who win and those who don’t,” Cipriani continued. “To combat this categorizing, Pen 2 Paper had started publishing a series called Those Who Got Away, which were pieces that weren’t finalists, but still deserved to be celebrated on their site.”

“In a similar way, Laura, Susie, and I wanted to make the process of being published through an anthology more accessible,” said Cipriani. “Laura and Susie began to offer conditional spots in the anthology to a few writers from the personal essay contest. The only caveat was that the writer work with them on developmental editing.”

Cipriani shares that as a result of the additional mentoring Laura and Susie were providing, the project took a little longer to produce — three years to be exact. Yet, shortly after setting a publication date for Accessing Parenthood: Essays by and about Parents with Disabilities, he received an email from Laura informing him of Susie’s passing.

“The entire team was crushed,” said Cipriani. “Susie was the heart of this operation, and we were sad that she wouldn’t be able to join us at the launch.”

Susie loved purple and hot pink, according to Perna.

“She was excited about the customization options on her last power chair, which allowed some pink highlights,” said Perna. “One day she showed up at the office with neon pink hair. She was a die-hard Boston Red Sox fan and in cooler months often wore a leather Boston Red Sox jacket. She wore glasses and a nearly perpetual smile.”

Perna describes Susie as “a workhorse and a perfectionist.”

“She took a lot of care to produce excellent work in anything she did,” Perna said. “We were similar that way, and we often joked about how sometimes that tendency got the better of us and caused undue stress.”

Susie loved dancing and going to baseball games.

“There was a stretch of a few years when she and her husband were constantly going to the Dell Diamond to watch our triple A-team, the Round Rock Express,” said Perna. “She was unflinching in her faith and an active member of the Austin New Church.”

According to Perna, Pen 2 Paper has been on hiatus since closing in 2020, and that will continue indefinitely.

“Even before the pandemic it was clear that it was getting too big for us to handle,” she said. “We had talked about continuing the contest as a much more paired down effort, hopefully one that includes Oleb Books.”

Susie Angel passed on August 20, 2022 in Austin, Texas at age 52. She had been suffering from cancer for some time, though it is believed that pneumonia and the loss of her attendant care were contributing factors. She leaves behind her husband of 30 years, her mother and her stepfather, her sister and brother, plus extended family. She also leaves behind many loving communities in Austin and around the world. For more information on Angel’s legacy, you can check out the tribute the Coalition of Texans with Disabilities published on their website at Coalition of Texans with Disabilities (txdisabilities.org).

The post Oleb Books Mourns the Passing of Susie Angel: Author, Editor, and Disability Advocate appeared first on Oleb Books.

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

The post Blind Bay Area Author Discusses the Disability Experience in Literature appeared first on Oleb Books.

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.

The post Meet Author Andrew Gurza: Shining a Bright Light on Sex and Disability appeared first on Oleb Books.

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

The post Meet Attorney and Award-Winning Writer Heidi Johnson-Wright appeared first on Oleb Books.

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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