Creating Art Beyond Sight: Adapting to Vision Loss With Paul Castle

Paul Castle

Paul Castle is the Owner of Paul Castle Studio, where he creates whimsical artwork and children’s books shaped by his perspective as a blind artist. An author, illustrator, content creator, and disability advocate, he uses adaptive tools to keep creating after losing more than 90% of his vision to retinitis pigmentosa. Paul also co-creates the Matthew and Paul YouTube channel, which has grown to more than 1.5 million subscribers and 1.2 billion views, expanding his storytelling and advocacy to a global audience.

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Here’s a glimpse of what you’ll learn: 

  • [1:14] Paul Castle’s journey into art, storytelling, and becoming a children’s book author and illustrator
  • [7:13] How Paul navigated the emotional and practical realities of progressive vision loss
  • [12:52] Adapting creative work and artistic techniques as Paul’s eyesight changed
  • [20:58] Building a creative career through illustration, publishing, and entrepreneurship
  • [27:19] Why community, vulnerability, and connection matter when living with blindness or vision loss
  • [35:51] The role of art, technology, and accessibility in helping people create at any ability level
  • [38:57] Paul’s advice for finding resources, staying connected, and embracing life with vision loss

In this episode…

Creativity often changes when life does. For artists experiencing vision loss, that can mean finding new ways to work, express ideas, and stay connected to what matters. What does it take to keep creating as vision changes?

For blind artist and children’s book author Paul Castle, the answer is adaptation, curiosity, and a willingness to keep experimenting. As his vision declined from retinitis pigmentosa, he adjusted his painting process, embraced digital illustration tools that offered brightness and zoom, and learned that accessibility can expand rather than limit creative possibilities. Paul also stresses the importance of community, mobility training, and reaching out to organizations that support people with vision loss, showing that independence often grows from using the resources already available. His experience offers a practical reminder that creativity is less about a specific method and more about finding a process that continues to work for you.

In this episode of Heard & Empowered, Dean Thompson talks with Paul Castle, Owner of Paul Castle Studio, about creating art while adapting to progressive vision loss. Paul shares how he reshaped his creative process, used technology to stay independent, and built a career around art and storytelling. He also discusses community, accessible resources, and the value of continuing to create at any level of vision.

Resources mentioned in this episode:

Skills Spotlight:

Paul highlights four essential skills for navigating work and daily life with vision loss:

  • Adaptability: Adjusting tools, techniques, and routines as vision changes, from modifying a workspace to embracing accessible technology
  • Mobility Skills: Learning to use tools like a white cane to move more safely and independently
  • Confidence: Building the courage to use accessibility tools, navigate a visible disability, and worry less about others’ perceptions
  • Community Connection: Reaching out to organizations and others with similar experiences for support, resources, and greater independence

Explore training programs designed to strengthen these skills at NSITE-U.

Quotable Moments:

  • “When you realize you’re not alone, I think that’s where the healing really starts.”
  • “We’ve been creating art because it’s healing. It tells stories. It creates beauty and connection.”
  • “They’re more real than the world around me because I can see so much of it.”
  • “The first thing I do is call the local museum and ask if they have a touch tour available.”
  • “I like to say that I’m blind because it is the first step in educating the public about what blindness is.”

Action Steps:

  1. Embrace adaptive tools and technology: Using brighter workspaces, digital tablets, zoom features, and other accessible tools can help you continue creating as your vision changes.
  2. Connect with people who share similar experiences: Finding community can reduce isolation, provide emotional support, and make it easier to navigate vision loss with confidence.
  3. Reach out for mobility training and support: Learning to use tools like a white cane can improve safety, independence, and confidence in everyday life.
  4. Focus on the creative process, not just the result: Treating art as an enjoyable form of expression can make creativity accessible regardless of skill or level of vision.
  5. Explore resources designed for people with vision loss: Local programs, nonprofits, accessible museum experiences, and social communities can open new opportunities for learning, connection, and independence.

Sponsor for this episode:

This episode is sponsored by National Industries for the Blind (NIB), the nation’s largest employment resource for and employer of people who are blind, low vision, or visually impaired. NIB creates opportunities for people who are blind to become wage earners and taxpayers, reducing their reliance on government support and increasing engagement with their communities. Learn more about their impact at NIB.org.

This episode is also brought to you by NSITE, the premier organization dedicated to connecting professionals who are blind, low-vision, or visually impaired with career opportunities. Whether you’re an employer seeking talented individuals or a job seeker ready to take the next step, NSITE provides the resources and support to help you succeed. Learn more and explore opportunities at NSITE.org.

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Episode Transcript

Intro: 00:01

Hey there. Thanks for listening to the Heard & Empowered podcast, the podcast for the Working Blind, sponsored by the National Industries for the Blind. I’m your host, Dean Thompson. This podcast is about information. Hopefully you’ll get a lot from this and hopefully it’ll help. And our guest today is Paul Castle from Seattle. Am I right, Paul? You’re in Seattle.

Paul Castle: 00:19

I sure am. Okay.

Dean Thompson: 00:21

And is it safe to say, since this is the podcast of the working blind, that you work for you, you’re self-employed.

Paul Castle: 00:28

Yes. That’s correct. Yes. I own and operate my own little studio. We’ll probably have a chance to talk about more and more about how that came to be, but it’s nice to be able to be my own boss.

Dean Thompson: 00:42

Well, it said you never work harder than when you work for yourself. You found that to be the case.

Paul Castle: 00:46

I mean, it is true that you definitely work harder, but it hardly feels like work to me because I’ve chosen something I love so much. And I know that’s a bit of a cliche, but I just. I truly feel that it’s true.

Dean Thompson: 00:58

It’s true. So let’s jump right in to your books. I’ve haven’t read them, but I’ve looked at the covers. I’m totally think that Mr. Maple is edible. Tell us about your book, your writing career and how it came to be. Please.

Paul Castle: 01:14

Yes. I am a children’s book author and illustrator. I’ve written and illustrated six children’s books now since I started in 2020. It took a couple of years for the first one to come out. So officially, it actually arrived in 2022.

So I’m, and I’m working hard on the next book, several books actually, but you know, it all started when I was six years old. I have to say, at the age of six, I was, you know, my, like most kids, very interested in art. I was a very creative kid, loved stories, loved storytelling. Even before I could write, my babysitters knew that they had to show up with pen and paper and ready to Transcribe all of my stories because they could write quickly. And I would, you know, I would dictate and my mother would collect all these stories, and then I would draw pictures to go along with them.

And I knew then I wanted to write books and to make visual stories. And art was just a real passion of mine. I got into painting as a teenager, traditional painting on large canvases, and that took me through college. And kind of as a side hustle. I was getting my paintings up in little galleries, mostly coffee shops and restaurants.

I’ll never forget the first restaurant I got up in was in Vancouver, B.C., where I’m from Vancouver originally, and we had to get there extra early to hang the paintings before this seafood restaurant opened right down by English Bay, and we had to step over an open grease trap to get through the back door because they were cleaning and I was sort of balancing my paintings as we’re stepping over this stinky grease trap and hanging the paintings. And it was just a funny, you know, it was such a quirky little restaurant too. And I sold, like all of my paintings in a matter of a month. And I was like.

Dean Thompson: 03:18

Remember the first time you sold one to whom you sold it? What does that feel like?

Paul Castle: 03:22

Oh my gosh, I do. Yeah, yeah, I paid, I think $30 a day to have a table at a holiday craft market when I was 20 years old and I. You know, I sat there with my paintings. I created a whole bunch of original paintings, and I had no idea if anybody would be interested in them. And I did one about it.

I did one that was an Italian landscape, like a vineyard, and I’d never been to Italy. I just did it because I thought it would be appealing. And this woman came along who had traveled to Italy many times and she gasped. She was just so thrilled and excited. It was like a triptych, three paintings.

And then she had the perfect spot for it in her house. And she paid $90 for this painting, three paintings. So it was enormous. But to me, $90, I was like, wow, somebody’s gonna give me for my work.

Dean Thompson: 04:18

Yes. Of course.

Paul Castle: 04:19

Yeah, yeah. It was very exciting.

Dean Thompson: 04:22

Now you, I understand, are an r p victim, retinitis pigmentosa. When did you begin to lose your eyesight? I’m assuming you started your visual career before your vision became too diminished, am I right?

Paul Castle: 04:33

That’s right. I mean, because like I said, I started this whole journey with art and storytelling when I was six years old, and I don’t even think the symptoms really made themselves apparent until I was probably eight. I was on a camping trip with my parents. I distinctly recall everybody pointing up at the sky, excitedly pointing out constellations because we, you know, were getting away from the city and they could see the stars, only I, I couldn’t see them and I, I, I thought they were lying. I thought my brother was making it up.

He said he’s, he’s excitedly looking at this, the Big Dipper. And I said, I can’t see it. I could see the moon. It was big and bright. It was bright enough for my eyes to pick up.

But because the first symptom of retinitis pigmentosa for many people is the loss of low light vision, so looking up into the sky was just a big inky black void. And then I eventually was so envious of my brother having, you know, all the fun looking at these stars. I pretended I could see them, and I’ll never forget that. When I pretended I could see it, my parents were relieved. They were relieved, I think, because they thought, well, oh, he understands.

You connect the dots, you can see the constellations. But I perceive that as. They were relieved that nothing was wrong with me, and so I felt shame for not being able to see them. And because of that feeling of shame, I actually kept this a secret and I wasn’t diagnosed officially until I was 16 years old. Wow.

And I didn’t know, of course, that I had an issue. I just thought something was wrong with me and then that I couldn’t describe because I was already wearing glasses from age five. Because we’d already identified blurry vision, which of course is unrelated to the retina. And basically I was labeled as accident prone. You know, in school sports, I was terrible.

The balls would hit me in the head or go flying by, or I would trip and fall and run into things. And, you know, my parents thought, well, we’ve got his glasses figured out. His prescription is correct. He must just be clumsy. And, you know, clumsy people do exist.

So I sort of began to identify as a clumsy person. And I think it was this combination of hiding the shame piece and also being labeled as clumsy or accident prone, that put off the diagnosis for so long. And finally, when I was learning to drive, a car, got behind the wheel of a car. Thankfully, in rural Canada at the time, not many people on the road, but I did pick the one person out there to almost run into. And that was the day we realized something was very wrong, and I was eventually diagnosed after seeing several specialists.

Dean Thompson: 07:05

Did you think, oh, this is a problem, it’s going to get fixed. I’ll get better. Did that what was your what were your thoughts at that point?

Paul Castle: 07:13

Well, I mean, there was a period of several months while I was getting referrals and we didn’t know exactly what I had. So of course, during that time, I was hopeful that it would be, you know, a treatable condition because I knew that I was struggling with my vision. But the day I was diagnosed, I’ll never forget it. It was around Christmas time and I was 16 years old. My parents had been divorced for six years, but they were both there that day together in the office with me.

And I’ll never forget the moment because the doctor said, you have this disease. I’m the leading specialist in the country. I know it when I see it. It’s called retinitis pigmentosa. There is no treatment.

There is no cure. In fact, all he wrote on the little sheet of paper that we left with was eat more spinach. And it’s I mean, I’ve kept this piece of paper since I was 16 because it’s just so insane that at the highest level of medicine, the leading specialist in perhaps one of the leading specialists, ophthalmologists in the country and the world was all he had to tell me was to eat more spinach. All he could tell my parents was, you know, make sure he gets more vitamin A, essentially, and there isn’t any cure or treatment. And at the time he said, well, you know, there’s hope because there are there are trials and there are people looking into this and science is attempting to get behind it.

But we don’t know when that’ll be maybe 10 to 15 years. But he actually said, I wouldn’t count on it. And your son will be blind by the time he’s 40.

Dean Thompson: 08:52

And are you? What level of sight you currently have?

Paul Castle: 08:55

Well, that’s an interesting question altogether, because at the time of my diagnosis, I was not yet blind or I wasn’t even legally blind. I didn’t meet the threshold, but I was very close. By the time I got into college, I met that threshold. And you probably know, blindness is determined based on one of two factors. Either you’re better seeing eye cannot be corrected to visual acuity beyond 20/200, or you’re better seeing eye has a visual field of vision less than 20 degrees.

And so I fall into the second camp because my eyes can be corrected to about 20/80. But I have a visual field that is very tiny. It’s less than sometimes it’s somewhere between 5 and 10 degrees. And leaving me with what my doctors, you know, hesitantly say is around 5% of my vision. The reason they’re hesitant is because, as anybody with a degenerative eye disease knows, it really depends on the room, the day, the light.

I mean, there’s so many factors.

Dean Thompson: 09:55

It’s arbitrary as heck. Yes, indeed.

Paul Castle: 09:57

Yeah.

Dean Thompson: 09:59

Wow.

Paul Castle: 09:59

But I’m blind. And to answer your question, at that point, I would call myself visually impaired or legally blind or partially sighted. And I wasn’t comfortable calling myself blind yet because I hadn’t really been tapped into the blind community enough to know that once you’re legally blind, you’re blind. And that is now something that I wear with a badge of honor. I talk about my condition not as I’m partially sighted or I’m legally blind.

I like to say that I’m blind because it is the first step in educating the public about what blindness is. Most people think blindness means no vision, and we all know that actually, 93% of the blind community has some functional vision.

Dean Thompson: 10:40

How many times have you heard the statement but you don’t look blind? Right.

Paul Castle: 10:44

Oh, all the time. And, you know, because I have made sort of a career out of educating and advocating on social media. I get it, you know, several times a day in the comments. But, you know, we handle that with care because we know that even though sometimes it can come off as ignorant or even rude, most of the time it’s just curiosity. And I would say nine times out of ten, even those rude people when they’re just given a polite, kind definition, they apologize for being ignorant.

Dean Thompson: 11:12

So you began to paint, I guess, before and during, well before college and throughout college. What did you do after you got out of school? What was your next move?

Paul Castle: 11:19

Well, I moved back to Canada. I was studying in the Bay area of California and where my dad lived, but I was an international student and paying some international student fees. So I would go back and forth between semesters to make money by selling my paintings and living in Vancouver and after college, you know, by the time I graduated with an English degree, I Realized that I could actually make a career as a painter. It was something I never dreamed possible. But because I was supporting myself through college, by doing these, you know, holiday craft markets and getting my paintings in coffee shops and restaurants and eventually in galleries, I was like, wow, you know, I can, I could do this for a living.

And the thing that was most lucrative about it was people really, they saw what I did and they wanted a custom piece. And so commissioned custom artwork became sort of like my daily life for a while. I had a home studio and I was always working on some pieces for people, everything from, you know, whimsical pet portraits. I should note, my art is not realistic. It’s more abstract, surreal, it’s whimsical.

So, you know, when people would ask me to paint a portrait of their cat or their dog, they knew what they were getting. It wasn’t going to be I am blind after all, so it’s going to be a really fun interpretation.

Dean Thompson: 12:44

And when did you feel your diminishing vision had an impact upon your ability to paint or. Or does it?

Paul Castle: 12:52

Oh, it always has. It always did. I mean, I probably didn’t really start to notice the impact until college because in high school, when I was painting mostly for fun, I mean, I don’t think it was really inhibiting me too much. But there did come a time in college when I was taking things more seriously that I realized, like, I’m going to need a lot more light in my studio. So I bought large lights to shine directly down onto my canvas.

And I also needed space in my studio because of the nature of my disease, because the world was closing in and the tunnel vision was really setting in. This was the biggest piece I’m looking through. What started off kind of like looking through an amorphous keyhole. And then it shrunk a little more to like a paper towel tube. And then, you know, a straw and a pin point.

So as that got smaller, as the little tiny visual of the field of vision at the center of my eye shrunk, you know, I had to stand further and further back from my painting in order to really capture what I was looking at. So it was a lot of walking back and forth. I could zero in on a tiny spot on my canvas, and then I would step back really far to try to fit more of it into my sight so I could really understand what I had just painted. And there was a lot of this back and forth that I invented that I realized I could do. I’m.

And then I’m literally taking what I can see. And even though I’ve never seen a piece of mine like all at once, I can’t see it all at once. Like a normally sighted person, I can see pieces and I quickly scan it, you know, like an old fashioned computer scanner. And then in my mind’s eye, I’m getting the full picture as close as it could be. You know, that was so and I’m making adaptations based on that.

You know, I’m adapting as I go more light, more space, more of this back and forth, even changing the style, even changing how I was painting. And you might think like, oh, it probably got less detailed, actually got more detailed, interestingly enough, because I went from doing very broad, very bold, almost urban art style with like, and it’s really just a sort of a, a technique that I invented in college that was selling well that people liked. But as I lost my vision, I actually needed to focus on that little, that little tiny piece of vision that I had and just work with small, tiny brushes that would fit in that little piece of vision. And so what I could do is actually create a piece of art that was far more detailed and took a lot more time. I know I’m on video right now and you can’t see me, but behind me is one of my paintings.

It’s one of these paintings that was very detailed. There’s a floating castle over an ocean with clouds and such. And hot air balloons. And it’s. And it did the whole thing with very tiny brushes.

Dean Thompson: 15:45

Can I refer to one of your book covers for a second?

Paul Castle: 15:48

Absolutely.

Dean Thompson: 15:49

I went online, I think I started with is it Mr. Maple: A Guide Dog’s Journey? Is that the title of the book?

Paul Castle: 15:54

That’s it. Yes.

Dean Thompson: 15:55

Okay, so I found that and I would encourage our listeners do that now. And you’ll see one of the covers, which is a caricature of a big old lovable dog. How did that evolve that process? Tell us how you painted the cover of that book, please?

Paul Castle: 16:11

Well, that’s, you know, this is where things eventually went was into illustration. I went from traditional painting to illustrating. So I would say it was in 2019. No, I want to say it was around 2020 that I was working on a piece of art, a custom piece, and part way through it, I told my husband, Matthew, I said, I think this might be the last one because while I could do it, it was just hurting my eyes a lot and it was really straining things. And I decided, you know, it’s not enjoyable anymore and I’m gonna have to hang up my brushes.

And I did. And it just so happened that at that same time, the tablet technology was just so good. I don’t know if you’re aware, like there are programs on iPads that simulate paper and pens and brushes with incredible specificity and, and, and feedback. And I gave it a try and I said, well, this is ridiculous. I can’t paint or can’t draw on glass because it’s a glass slippery glass surface.

And my husband actually found a screen cover that makes the surface feel like real paper. And so I started sketching with it. And the reason this worked so well for me is because of. I can boost the brightness. It literally was brightening from within, right?

I didn’t have to get any light on the page. It was it. It illuminated and I could do the zooming in and out. I could make the canvas very small, make it very large, get in very close. And I didn’t have to move back and forth in my studio.

I could do it while I was sitting in a chair. And so that began my illustration career. And so the cover of Mr. Maple: A Guide Dog’s Journey that’s an illustrated image through the use of the tablet and the tools that I’ve acquainted myself with. And so I will just create these caricatures. I’ve kind of gone right back to my first love of drawing characters with pen and pencil and paper, just like I did when I was six years old creating my stories.

And that’s how I’ve done it. And, you know, I had an art mentor who lives here in the Seattle area who really gave me some pointers on character design, and I’ve just had so much fun with it. You know, it really all comes down to simple shapes. You know, that face, that image of maples, really just a sequence of circles and and ovals.

Dean Thompson: 18:45

Now, Mr. Maple is your guide dog.

Paul Castle: 18:47

Yes he is. Yeah. He has been since 2021.

Dean Thompson: 18:50

He’s still with you. If someone were to meet him and see the book cover, how drastically does it look? Or can you tell the difference?

Paul Castle: 18:58

Well, I don’t think it looks anything like him. It’s really it’s sort of like I was telling you earlier when I said I’d do the pet portraits earlier in my career. I said those people knew what they were getting. They were not going to get an accurate representation of their dog. They were going to get a whimsical storybook version made by Paul Castle.

And so the dog in my book is very much in that spirit.

Dean Thompson: 19:23

When did the writing enter into your, your, your art line?

Paul Castle: 19:28

Oh, since from the age of six, actually, before I was doing the art, like I said, my babysitters came with a pen and a pad of paper, and they knew they were going to be a stenographer for the afternoon, and I was going to dictate my story. So it started first. It’s always been my first love.

Dean Thompson: 19:44

When did you begin? Begin to combine the two.

Paul Castle: 19:48

Almost immediately. I still have a book on my bookshelf. It’s one of my most treasured items. It’s a book that I wrote and illustrated when I was six years old. It’s called The Sad Turtle, and I remember I did this on my own one weekend.

I said, I need a book, a real book. You know, I was very obsessed with this idea of having a book with a cover and everything, and I decided it couldn’t be a real story or a real book, certainly not a real book without a hard cover. So I went into my brother’s room and I stole one of his books, and I ripped out all the pages. It was a book called G.I. Joes in Space. I decided he’s read this one plenty of times.

He’s not gonna need it anyway.

Dean Thompson: 20:26

Yeah.

Paul Castle: 20:27

Yeah. And I ripped it. I ripped out the pages and I taped in all my own pages. A story about a sad turtle who didn’t have any friends. I don’t think I realized at the time how autobiographical it might have been, but by the end of the story, he’s met a lamb, a pig in a giraffe, and they’ve all have tea together.

That was my very first story. They had a tea party, and that was the first time I, on my own, combined my art with a story.

Dean Thompson: 20:54

When did you begin to sell your writing with your art?

Paul Castle: 20:58

Well, that didn’t happen until the pandemic. So this is what really launched the current career as an author and illustrator. So I’ve been doing my paintings and like I said, I was finished with that. I had to stop, but I was learning how to create art and have fun with illustrating on my iPad. And then something really quite amazing happened in 2019, my husband, my then boyfriend proposed to me and I said yes.

And we started planning our special day and we agreed about almost everything except for the invitations, the wedding invitations. I wanted to include a photograph of us, maybe like the proposal on the invitations. He thought that was a terrible idea. He was quite tired of photographs of us. He says that everybody’s seen us.

He said, Paul, why don’t you draw us? You’re an artist. So I said, that’s a great idea. Fine. I think he was tricking me, but I was.

I went for it. And instead of humans, I drew us as little animal characters because that was really what I’d been doing. What my favorite thing to do was little animal creatures. And I thought, well, who should we be? What sort of animals would be getting married?

And I immediately thought of penguins because they’re already in little tuxedos. They’re in formal attire.

Dean Thompson: 22:22

Exactly.

Paul Castle: 22:22

Yeah, they’re appropriately dressed, but as is a little Fun fact penguins do often select same sex partners in nature. This is sort of a well documented thing, but that wasn’t factoring into my decision. It was really just about the tuxedos. I put rainbow colored bow ties on them. I called them the Penn grooms, the Penn grooms, two penguins, grooms.

I thought it was cute. We actually posted it online and we had a little following at the time and people just loved it. They wanted copies of this illustration, so I made it available. And by the time our wedding came around, which was December 2019, it was really a theme. It became a theme of our wedding, which happened to be in Mexico, where no penguins can be found, but they were all over our decorations, and even there were even wedding toppers that my cousin made ceramic penguins with rainbow bow ties that went on top of our wedding cake.

And shortly after, as we all know, in 2020, the world shut down. And what happened was all of my art shows, all of those galleries, I was showing my work in, everything closed. And I, I was sort of left wondering, what are we going to do? Because my husband is a violinist and all of his live performances were canceled, too. And he said he thought this would be the perfect time for me to do something I’ve been talking about for many years, which was right in the illustrated children’s book.

And when I said, well, what should it be? What should I what would be the subject of it? He said, well, it’s got to be the penguins. And so I got to work right away and I kickstarted it. We decided we would self-publish it.

We didn’t even try to do the traditional publishing route, because we had this little audience of very invested fans that just loved the characters. And we knew about Kickstarter. We had friends that had used crowdfunding websites, so we thought, well, this would be fun, like a fun pandemic project. Let’s just do it ourselves. And we did.

And it’s become such a fun and successful journey that we haven’t stopped.

Dean Thompson: 24:28

And it’s a series of books about 3 or 4 of the Penguin books.

Paul Castle: 24:31

Now there’s three of them, and I actually just finished the fourth. It’s being printed, so it’ll be out by Christmas.

Dean Thompson: 24:38

And their names are Pringle & Finn, am I right?

Paul Castle: 24:42

Yes, that’s correct.

Dean Thompson: 24:43

Where did those names come from? Potato chips and small animals. What?

Paul Castle: 24:47

Yeah. Well, actually, it’s really funny. Pringle doesn’t have anything to do with potato chips. It’s an old Scottish surname, and that’s in my family because I have some Scottish roots, and I. I have my old family tree that I looked at once, and I saw that it was in there and I thought, well, that’s such a fun name.

And I think when I was drawing the first Penguin, I thought Pringle the Penguin. It just sounded really cute. I looked up the definition and it is a word in the English dictionary. Merriam-Webster describes it as an irritating tingle. And I thought, oh, like it’s actually a portmanteau.

It’s a combination of prickle and tingle. And I was like, well, that’s kind of perfect for, you know, a marriage. Half of a character in a marriage is this sort of annoying little tingle. But and when it came to naming the other penguin, my husband and I did a little. Some research, I would say, by walking around our neighborhood during the pandemic and looking for names.

There was this pet store that had closed. And in the window of the pet store where all these paw prints cut out of construction paper, and it had names of dogs that would visit the shop. And above it, it said, we miss our pets because of course, this shop was closed. And these were frequenters of this particular establishment. And we were looking at all these names.

And Matthew said, I think the name is in here. We got to find it. So we were looking at it and Matt trying to match it with Pringle, Pringle and Waffles, Pringle and Ringle and Winston. Pringle and Finn and we both stopped and we looked at each other and we said, oh, that’s it. It just sounds so perfect.

So somewhere, somewhere out there in the greater Seattle area, there is a dog named Finn who has no idea. We’ve been using his name in four books now.

Dean Thompson: 26:40

Well, if thing gets legal consideration, you might be in some rights issues. Let’s not go.

Paul Castle: 26:46

We could be, we could be. I think I’d be a little more concerned about the Pringles potato chip company at this point.

Dean Thompson: 26:51

Possibly. Possibly.

Paul Castle: 26:54

But we have trademarked it by the way. We have we do have the official trademarks, and Pringles has not put up a fuss.

Dean Thompson: 27:01

It seemed like an amazingly confident out there person. I don’t think that’s insightful on my part. It comes through just talking to you for a brief period of time. But when were you or were you ever scared when you realized your site was not going to be going to get any better? In fact, it was getting worse. Did that ever get you?

Paul Castle: 27:19

Yeah, not at first. Because when I was first diagnosed, you know, nothing changed. I, I, I had the same level of sight. The very next day. And I, I think that it was very abstract, the idea that it was all going to go away.

Like it just didn’t seem totally real. Like I understood that it was true. But I think as a very hopeful person, as a very glass half full type of person, I was really hanging on to the part where my ophthalmologist told me that people were looking into treatments and that this was a known disease. So it took a while, to be perfectly honest, for me to really process and confront the emotions of fear and sadness. And to be perfectly frank with you, it took three years.

I when I was 19 years old and I had moved to California for college, I got connected with the LightHouse for the Blind, which is a great organization, and they had a location in San Francisco and they had meetings for people to get together and talk. And it was actually my first chance to meet other people with similar diseases, maybe even the same diseases as I did. But I didn’t know anybody who was blind in my life. I had no blind connections. So my dad joined me on this, this little excursion into San Francisco, and I sat there around a big table of people, all different walks of life, different ages, different occupations, different stories, different levels of blindness.

And everybody was sort of sharing their story and they were going in a circle, and it came to me and I opened my mouth, and I was very ready to tell my story confidently, the way I’ve been talking to you. And I think my dad expected the very same thing of me, because I’ve always sort of been a speaker. And I opened my mouth and the words didn’t come out. My voice cracked, I choked, and I started to cry. I think it was the first time.

Of course I felt seen. Pun intended by other people who understood what I was going through. And I think a moment like that really took me by surprise. I felt that I was in a place where I was both understood by somebody in a way that I hadn’t been before, but also could see what potentially the future was. And there were people there who had lost all their vision.

And it was a very overwhelming moment. But I cried and it was a little embarrassing. But quickly it really wasn’t because people came around me and put their hands on me, and there was a lot of love and comfort and consolation in that room. And I think it gave everybody sort of the ability to open up and be similarly vulnerable. And I think that’s the power of meetings like that.

And what I discovered after that experience was that is where the real power is in a diagnosis like this. It’s being connected with other people that are facing similar things. When you realize you’re not alone, I think that’s where the healing really starts.

Dean Thompson: 30:16

I’m glad you brought that up, because one of the underlying, or maybe the overt messages of the podcast is there is a huge community of supportive people out there. You don’t need to try hard to find them. It’s easy. And once you’ve found them, you’ll never let go. I mean, that’s a community is very important in the area of being blind. Do you agree?

Paul Castle: 30:34

Oh, 100%. It truly is with you know, without that, I think I would be really likely struggling. Once you find community, everything changes.

Dean Thompson: 30:46

So Paul, let’s talk about skill levels. You obviously are a skilled writer, illustrator, children’s book publisher and writer. What other skills would you say you’ve employed that are unique to your condition that you could recommend to some folks listening to the podcast? What would those be?

Paul Castle: 31:07

Well, apart from occupational skills, you mean whatever.

Dean Thompson: 31:11

Yeah. But.

Paul Castle: 31:12

You know, I think the biggest one, I mean, if I could, would love to jump into is somebody who’s losing their vision at a sort of an unpredictable rate, just navigating becomes a whole new skill that has to be learned how to get around. And that’s, you know, a decision that isn’t made for you. It’s one that you have to make. Once the vision loss gets to a certain stage, what do you do next? You know, because there isn’t a manual that says on this day you start using a white cane.

On this day, you might want to use a guide dog. You have to encounter life in some scary ways first. So the skill I would like to talk about is actually learning to be brave enough to make that step, to take that step, to reach out to the resources. Now, when I first got my white, my, my, my white cane, I was home for the summer in college and I used the Canadian National Institute for the Blind, and I just found them online, called them and said, I need a cane, I think I need a cane. And they.

They were there within a week with canes measuring my height, giving me the appropriate training. And it was scary. I didn’t want to use it right away because I was like, oh no, I’m going to go from having this invisible disease that nobody knows I’m disabled when I leave the house to. I have like a big spotlight on me, an object in my hand that says I’m disabled. And that was a really that was big.

So even the mental switch was.

Dean Thompson: 32:38

Going to take you to get over that fear of, you know.

Paul Castle: 32:42

A long time, a long time. I have to say that I was using it inconsistently for maybe a few weeks or months. And then eventually I became so afraid that somebody would see me with it one day, and then the same stranger would see me, you know, without it the next time and think that I was some faking my disease or, you know, using it for sympathy. I became so frightened by that. I eventually was like, okay, I’m committed to using it.

I’m always going to have the cane in my hand. And of course I needed it. You know, it was preventing me from knocking over signs, walking off of curbs, you know, tripping and creating all sorts of dangerous situations for the people around me. So but it was my own fear of stigmatization that kept me from doing it. But then ultimately, it was my fear of people, you know, thinking that I would be, you know, faking my disease.

Meanwhile, I’m pretty sure people aren’t really thinking about me as often as I imagine they are. But nevertheless, I started to use it consistently. And then even after that, I would say, if I’m being brutally honest with you, it took a couple of years for me to stop feeling scared while I was using it. As in I, I, I, it took years to just go about my life in a normal way without constantly wondering what others were thinking of me when I walked into a room when I was crossing a street with the cane. It took a while, but it was so necessary and.

And the beautiful thing about it, the thing that sort of surprised me most was just the kindness around me. You know, I went from somebody who was walking into displays at the grocery store and knocking them over, and people thought, what is this guy? What’s up with him? Is he okay? You know, because there was no sign that I had a disability.

Why was I running into things to now I had a clear symbol, right? An apparatus that said, oh, he can’t see. So everybody was very eager to help me sometimes over help me. But you know, I would I think I would prefer that over the opposite. And so, you know, that was that was a skill, just learning how to use it and learning how to be in the world with a visible disability.

Dean Thompson: 35:00

Let’s talk about art as, I don’t know, a career. Okay. First, when did you think you would be a career artist that hits you? What? We began to sell paintings during college.

Paul Castle: 35:13

Yeah, I think so. I, you know, I wanted to be a career artist when I was a teenager, just taking art classes at school. I really thought, oh, could I do this, you know, for a living. I was also very interested in filmmaking, so I thought I might be a filmmaker. But when I was diagnosed with retinitis pigmentosa, I honestly thought that maybe that would never happen.

Meanwhile, I make many movies now for social media every day. So it did kind of come full circle, but I did. Yeah, take it more seriously once college came around.

Dean Thompson: 35:43

What advice, if any, could you give folks listening to this if they wanted to take it? They’ve got some artistic skills. They wanted to begin to apply that. Or is that a silly question?

Paul Castle: 35:51

No, I think that’s a fantastic question because art is accessible to all. I’m obviously a very passionate person about art. I think that art, you know, oftentimes, tragically, the arts are the first things that get cut from budgets, but I don’t think that we really could be without it. You know, we need it from the very start of humanity. We’ve been creating art because it’s healing.

It tells stories. It creates beauty and connection. And I think it’s necessary to human existence. And I think that it also offers everybody a sort of opportunity to, I want to say meditate. It feels very meditative.

So it can be very relaxing and enjoyable for somebody who might just want an outlet for their expression, because we all have some sort of creative expression inside of us. Whether or not you’re skilled at it is another thing entirely. I mean, most people don’t put in the hours that I put into it to turn it into a career. But if you want to enjoy the process. You know, for me, art is the process.

It’s not the result, it’s the process itself. So the act of doing it is what art offers us. And so I encourage people to do it. And when I say it’s accessible, well, just think about this. Every level is possible.

I mean, we if you had no vision at all. I know people with zero vision. They paint. They paint beautiful pictures. They know what colors they’re putting down.

They’re doing it with their hands. They sculpt, you know, they can do incredible things with that. And I’ve dabbled in all of that. And it’s really rewarding. And I think because technology is always adapting and creating new opportunities, much like I discovered with the tablet and creating illustrations digitally, I think that there’s just an opportunity for everybody to find enjoyment regardless of your level of skill or ability.

Dean Thompson: 37:57

Years ago, I met a friend of a fellow who also had RP. I believe he was pretty much completely blind by the time I met him. He had become a sculptor and quite a successful one in his middle years, and he said he always grew up with the statement that art is in the eye of the beholder, he says. Now, the older I get is the art is in the head of beholder. You don’t see what we see with our brain. I was a wonderful statement. You agree with that.

Paul Castle: 38:19

100% because, you know, I don’t see very much in the physical world. But my imagination is a very vivid, detailed place. And I dream in glorious details. And the movies that play in my mind are extraordinary. They’re more real than the world around me because I can see so much of it.

Dean Thompson: 38:41

Any final advice you want to hopefully a whole bunch of people listening to this. If not, they better. This is a fascinating conversation. If you could be talking to a few hundred or thousand of folks who’ve likewise lost or are losing their vision, what final bit of advice would you impart to them, if any?

Paul Castle: 38:57

I would say it’s too easy to become isolated, especially when you have a degenerative disability. Blindness is a very isolating thing, so I would encourage anybody, if they haven’t already, to reach out to your local programs. There’s so many great nonprofits. The Washington State Department of the blind is something that I’ve tapped into. They even were able their whole goal.

They’re set up to get people who are blind jobs that pay. You know, they want to set you up. And there’s, there’s resources out there. They don’t charge you a thing. They actually bought me my first iPad and it didn’t cost me anything.

And they taught me how to read Braille and, and they have great community meetings. And they got me connected with other people when I travel to other cities. The first thing I do is call the local museum and ask if they have a touch tour available. I’ve done touch tours at many museums all around the world, and you meet the most wonderful people, and you have the most incredible intimate experiences with works of art that sighted people will never have the opportunity to do. You get to put your hands on Michelangelo’s sometimes, believe it or not.

And, and, and and, you know, sighted people look on with envy. And I think once you really tap into the world out there and what’s available to people who are low vision or no vision, you start to realize that actually there’s some really incredible things that make me feel kind of proud to be a person with this disease. And along the way, you meet people and to come full circle to talk about the connection. If you can’t get out to a meeting, there’s incredible connection through social media. That’s sort of what I’ve tried to create on our pages, is a place where people can tell their stories and feel seen and connect with others.

And I think the moment you realize that others are going through something similar to you, it just makes life that much better.

Dean Thompson: 41:00

Paul, tell everybody, how do we find you online? How do we find your work and your books online? Please?

Paul Castle: 41:06

Yeah, sure. So I have a website called PaulCastlestudio.com, and you could also find me on TikTok and Instagram, Paul Castle Studio. And then if you are interested in learning a bit more about the dynamic that I have with my husband, he is a prankster. We didn’t get to talk about that, but he pranks me and it’s completely allowed in our house. It’s something that it’s a love language and we enjoy it.

And you can find us if you search for Matthew and Paul or Matthew and Paul on TikTok and Instagram. We have a fairly large audience on there that are, I think, showing up for the pranks and probably mostly my guide dog, Mr. Maple. So there’s a lot of fun content surrounding that too.

Dean Thompson: 41:49

And Castle is CASTLE traditional spelling.

Paul Castle: 41:52

Yes it is.

Dean Thompson: 41:54

Paul Castle, this has been wonderful. I want to thank you so very much. And wish you nothing, but. Well.

Paul Castle: 42:01

Thank you so much, Dean. This was such a pleasure to talk to you, and I hope we can do it again someday. This was really fun.

Dean Thompson: 42:08

Thank you.

Doug: 42:09

I’m Doug from NSITE, where we help talented people who are blind or have low vision or visually impaired, build meaningful careers and help employers access a much overlooked source of talent. Today, our guest spoke of the power of independence, self-starter skills, mobility, community, and confidence. These qualities are all essential ingredients for personal and professional success. If you’re ready to channel those strengths into building something of your own, consider NSITE’s Entrepreneurial Initiatives program. This course equips aspiring entrepreneurs with the tools, strategies, and support needed to launch and grow a successful business.

If starting a business isn’t your next step just yet. NSITEs building professional behaviors can help you establish the routines, habits, and workplace practices that best support your long term career growth. To learn more about these programs and other career development opportunities, visit NSITE.org. That’s nsite.org or our NSITE University home page at NSITEu.org. Thanks for listening and hope to see you next time.

Outro: 43:32

Thank you for listening to the Heard & Empowered podcast. Please make sure to subscribe so you never miss an episode. For more information, visit heardandempowered.org. That’s heardandempowered.org. Join us again next time.

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