SEATTLE — Paul Castle was just 16 when he learned he would gradually lose his sight until it disappeared. Doctors diagnosed him with retinitis pigmentosa, a rare eye disease that causes the retina to slowly break down over time. The disease, which affects only one in 3,000 to 4,000 people worldwide, has no specific treatment options or cure, leaving it helpless.
Castle, who described himself as “eternally optimistic” at 16, took the diagnosis head on – or so he thought he did.
“I spent a good four or five years pretending this was great news,” he told The Blade. “And in some ways it was a relief to know that I wasn’t just clumsy. There were all these unanswered questions, so knowing that this was a disease with a name, that I was not alone, and that science was indeed looking for a cure for it was encouraging.
But this cheerfulness had a limit. Castle said he had always been a visual art enthusiast, so “the irony of going blind” took a long time to set in.
“Since then, I’ve had time to grieve and accept and process this, and come full circle to the point where now, in a weird way, I feel very lucky,” he said. . “Being part of a really cool community, the blind community, is really amazing.”
Now Castle, 31, is legally blind, with about 10% of his sight. He moves to Seattle, where he, along with his guide dog, Mr. Maple, saw a substantial improvement over the white cane he used years before. “Getting the dog was like a super cool confidence boost because I love walking with dogs,” Castle said.
But just because Castle is legally blind doesn’t mean he’s given up on his love of the visual arts. In fact, he’s a full-time artist who’s about to release his first children’s book, ‘The Pengrooms’ – a story about same-sex marriage and her relationship with her husband.
“Blind is that term I try to educate people on,” Castle said. “Disabilities are nuanced, and I think most people outside of the blind community assume that blindness means it’s total darkness – that there’s no scale. But the community of the Blind is filled with people who have usable sight, whether it’s shapes and colors, whether it’s tunnel vision, like mine, or complete blindness.
Technically, “The Pengrooms” won’t be Castle’s first book, although it will be the first to hit shelves. His earliest books date back to his childhood – even before he could write the stories himself.
As a child, Castle, who spent most of his childhood in Canada, would have his babysitter sit down to transcribe any story he conjured up in his head. Then he poured onto a piece of paper, drawing the pictures to accompany his stories.
“I would say my first love was storytelling,” Castle said, adding, “I would come up with all these really fantastic stories and the babysitter would basically sit at the kitchen table and write all the time.”
At age 6, when most children were playing outside, Castle was “always” inside drawing. At the time, making his real “very personal” book occupied his thoughts. So he took matters into his own hands.
Castle remembers stealing a book – “GI Joe” – from his brother’s shelf, ripping every page out of the spine, and throwing the remains in the trash. He then recorded a story he wrote titled “Sad Turtle” inside. The story is about exactly what it sounds like: a sad turtle. ” But do not worry, [the turtle] made a lot of friends,” he said.
“It’s one of my most prized possessions,” Castle said. “I swear if this place was on fire and I could only take one item with me, I would take this book.”
It grew exponentially every year thereafter, quickly becoming consumed by Disney animated films. “When I went to see the movies, rather than going home and talking about the story and the characters, I was getting books about how the movies were made,” said Castle, whose dream to the era was being a Disney animator.
Since then, he’s come a long way, swapping the tape and stolen cover for an actual full-color hardback that’s expected to ship next week.
“Follow Pringle and Finn, two kind-hearted penguins, as they deliver wedding cakes to their friends in the animal kingdom,” the official synopsis reads. “Every cake tells a story, and every wedding offers a challenge that Pringle and Finn must overcome together. The Pengrooms is an enduring story about love, diversity and the importance of working as a team.
In the story, Pringle and Finn represent Castle and her husband, Matthew, and the “beauty” he found in her marriage.
“We work as a team; we’re collaborators who support each other,” Castle said, adding, “For me, our relationship is about teamwork.”
In his book, he echoed that sentiment, dedicating it to Matthew, “…because we’re a great team.”
The LGBTQ-themed children’s book comes as Republican politicians across the country try to limit teachings and books that deal with queer people.
In Florida, Republican Gov. Ron DeSantis last week signed the so-called “Don’t Say Gay” bill into law, which provides classroom instruction on sexual orientation and gender identity from kindergarten through Grade 3 and allows parents to sue schools or teachers. The legislation has already been challenged in court, with LGBTQ+ rights groups Equality Florida and Family Equality filing a lawsuit against the law last Thursday.
GOP lawmakers have also targeted the fastest-paced LGBTQ-themed literature in recent history. Some Republicans have called these books “pornography” — from Maia Kobabe’s “Gender Queer: A Memoir” to Carmen Maria Machado’s “In the Dream House,” both of which are award-winning memoirs recommended for high school-aged teens — intending to remove them from the library shelves.
Reporters from the Texas Tribune, ProPublica and NBC News have obtained and confirmed a recording of a January 10 meeting, where Jeremy Glenn, the superintendent of the Granbury Independent School District in North Texas, met with a group of librarians in a district meeting room — where he explicitly targeted LGBTQ+ books before beginning one of the nation’s largest book takedowns.
“Specifically, what we’re getting at, let’s call it what it is, and I’m going hunting for a lot of things,” Glenn said, according to the report. “It’s transgender, LGBTQ and sex — sexuality — in the books. That’s why the governor said he would sue people, and that’s what we’re taking back.
This political climate has, in part, fueled Castle’s creative work. “My interest in storytelling usually comes from a place of advocacy, whether it’s LGBTQ or advocacy for the disability community,” he said.
Castle has already started work on his next book, which will focus more on disabilities, detailing the process of finding a guide dog, set in a fantasy world with guide unicorns and dragons.
Castle is not someone who defines himself by his disability – no one is. But that doesn’t mean he hasn’t had to adapt to keep pushing his creative visions forward. For example, Castle’s eyes no longer pick up a pencil on paper, but he finds that the brightness of an iPad is enough to do the trick.
“The beautiful thing is that iPads and tablets have become such a popular tool for illustrators. In fact, there are very few illustrators who use traditional pen and paper now,” he said.
For Castle, “eternally optimistic”, life’s obstacles have never stopped him from creating and achieving his dreams. And he intends to continue like this.