Paul Castle: When Being Seen Still Means Being Misunderstood

As a child, Paul Castle pretended he could see because he was ashamed that he couldn't.

As an adult, strangers accuse him of being able to see too much to really be blind.

Some of that disbelief comes from the things Paul does—including creating visual art as an author and illustrator of children's books.

There are decades between those two experiences.

But I keep thinking about what they have in common.

Before he knew

Paul has retinitis pigmentosa, a progressive eye disease. Before he knew that, he simply knew there were things everyone else seemed able to see that he couldn't.

He remembers looking at the night sky while his older brother pointed out the Big Dipper. Paul couldn't see it. His family tried to help him understand. Connect the dots. Except Paul couldn't see the dots.

He remembers feeling slow because his brother could see something he couldn't. Eventually, he stopped admitting when he couldn't see things. Paul says he pretended for years out of “shame, embarrassment, and not wanting to feel different.”

Before he had an explanation for what his eyes were doing, he found explanations for himself.

Maybe he was slow. Maybe he was clumsy. Maybe he was the problem.

His difficulty navigating in low light was interpreted as being accident-prone, and Paul himself began wondering if he was simply clumsy.

At 16, he finally learned there was another explanation. He was losing his vision.

Suddenly, experiences that hadn't made sense had context. But Paul's story doesn't end with finally understanding his blindness. Eventually, other people would decide they understood it better than he did.

“I'm not convinced he's blind.”

Years later, Paul and his husband, Matthew, began sharing more publicly about their life as an interabled couple and Paul's progressive sight loss.

People began accusing Paul of faking his blindness. Part of the confusion is that Paul has some remaining vision.

Matthew explains that Paul can sometimes visually locate something as small as one of someone's eyes. To the other person, it can look like conventional eye contact—even though Paul may not see the rest of their face. Paul describes his remaining vision as somewhat like looking through a pinhole or straw.

Then came one particular comment: “I'm not convinced he's blind.”

Paul made a reel responding to it. He was visibly emotional. And suddenly this wasn't an abstract conversation about misconceptions surrounding blindness. It was about what disbelief does to the person being disbelieved. A person who once spent years pretending he could see was now being asked, in a completely different way, to prove that he couldn't.

But what if it was a compliment?

Something else happened underneath Paul's reel. People tried to make him feel better. One commenter suggested that maybe “I'm not convinced he's blind” was actually intended as a compliment. Maybe the person was so impressed by Paul's artwork that they couldn't believe someone who was blind could create it. And now the contradiction becomes hard to miss.

The very thing Paul creates becomes evidence, in someone else's mind, that his disability can't be what he says it is. I understand the instinct to soften the comment. When someone is hurting, we want to make the hurt smaller.

Maybe they didn't mean it that way. But there's a question underneath that reassurance that I think is worth asking: If disbelief in someone's disability becomes a compliment, what exactly are we complimenting them for?

For not seeming blind? For being capable of something we didn't expect a blind person to do? Intent matters when we're trying to understand why someone said something. It doesn't erase the assumption underneath it—or decide its impact. Sometimes ableist microaggressions don't sound cruel. Sometimes they sound like admiration.

You don't look disabled. I can't believe you can do that. The compliment may be sincere. The expectation underneath it can still be ableist.

Paul chose to be seen

This is where Paul's advocacy becomes particularly meaningful.

Paul says he deliberately chose to represent something online that he felt wasn't being represented. He and Matthew have spent time explaining the spectrum of blindness and creating ways for people to understand different experiences of vision loss.

Think about that journey. The child who once pretended he could see eventually became an adult willing to show people what he actually sees. And when people didn't understand, he helped make their understanding bigger.

Eventually, Paul noticed something changing. Longtime followers began answering questions and educating newer commenters themselves. That's one of the things I find most powerful about his advocacy. Education travelled. Paul didn't have to carry every explanation alone anymore. And perhaps the next blind person won't have to explain quite as much either.

Let blind people be ordinary

Paul challenges expectations through his creative work too. But I don't think the important story is that Paul somehow manages to create visual art while blind. That would repeat the very assumption his work challenges.

Paul has also spoken about a portrayal of blindness he dislikes: the blind character whose disability is compensated for with extraordinary abilities. It's a trope he says he's been combating his whole life.

What would he rather see? “I want to see them make mistakes like I do.” There's something wonderfully ordinary about that. Not tragic. Not superhuman. Not inspirational because they managed to do something we assumed blindness should prevent. Just human.

What Paul's story changes for me as a therapist

I keep returning to the little boy looking for stars he couldn't see. Before Paul understood his disability, other explanations filled the gap. Slow. Clumsy. Different.

Then he finally understood what he was experiencing—and later encountered people who questioned that understanding too. Even when he showed that disbelief hurt, some people tried to offer another interpretation: Maybe it was a compliment.

There is a thread running through all of it. Other people keep supplying meaning for Paul's experience. That's where his story intersects so strongly with disability-affirmative therapy for me. One of the principles that guides my work is that the client is the expert in their own lived experience.

That doesn't mean either of us necessarily knows immediately what everything means. It means we can become curious without assuming my interpretation carries more authority than their experience. Because disabled people may have spent years hearing other people's interpretations:

You're too sensitive. You're anxious. You seem fine. You did it yesterday. I'm sure they didn't mean it that way.

After enough of that, the question isn't only whether other people believe you. It can become: Do I still trust myself? 

That gives me a different therapy question from Paul's story: What has repeatedly having your experience interpreted by other people taught you about trusting your own? Sometimes disability-affirmative therapy isn't about helping someone find their voice. Sometimes it's about creating a place where they don't have to defend it.

From pretending to visibility

As a child, Paul pretended he could see because he didn't want people to know he was different.

Today, he tells people what he sees. He tells them what he doesn't. He makes art. He talks about blindness. He lets people see when disbelief hurts.

Paul isn't doing this so the rest of us can become experts on blindness. Maybe he's giving us an opportunity to become a little less certain that we already are. Because when someone's disability doesn't look the way we expect, perhaps the person isn't the contradiction.

Perhaps our expectation is.

If you're looking for disability-affirmative therapy in BC, I provide virtual counselling for teens and adults with physical disabilities, chronic illness, medical trauma, and advocacy fatigue. Learn more about Disability-Affirmative Therapy