Disordered, Deficient, Dehumanized: How the Language of Aphantasia Research Shapes What We Think About It

In 2019, Dr. Brett Scholz was sitting around a dinner table at a psychology conference in Australia when a colleague mentioned, casually, that they couldn't picture things in their mind.

"I thought, well hang on, isn't that just everyone's experience?" Scholz recalls. "We sort of went around the table, and three of us—including myself—experienced aphantasia out of a table of six or seven people."

That dinner didn't just change how Scholz understood his own mind. It set him on a path that would eventually lead to a paper in the Journal of Mad Studies—a paper that asks an uncomfortable question about the field of aphantasia research itself: what happens when the people studying a condition frame it as something that needs fixing, without ever noticing they're doing it?

Scholz, an associate professor in the School of Medicine and Psychology at the Australian National University, has spent most of his career examining how lived experience shapes—or fails to shape—health research. His work in mental health and palliative care has long focused on a simple but radical idea: that the people who live a condition may know things about it that clinicians and researchers don't. With aphantasia, he found a field where that principle was almost entirely absent.

The Discovery That Felt Both Obvious and Invisible

What struck Scholz about that conference conversation wasn't just the realization that he had aphantasia. It was what happened afterwards.

"A lot of people sort of asked, well, what was it like to discover that you were aphantasic?" he says. "But it struck me that nobody ever asked people who do produce visual imagery, what is it like to realize that you produce visual imagery? What is that experience like for you?"

Visual imagery is treated as the baseline. Aphantasia is treated as the deviation. And that framing—so deep it goes almost unremarked—quietly shapes the questions researchers ask, the words they use, and the conclusions they draw.

Tom Ebeyer, founder of Aphantasia Network, recognized the dynamic immediately. "Even words like picture—it's kind of like a metaphor. You can play the language game of visualization without actually having that perceptual experience."

Scholz agrees: "I remember conversations from before I realized that aphantasia was a thing where people would say, 'imagine or visualize X, Y, Z.' And I just thought everyone was like me—having something in the imagination, just not a visual representation of it."

What the Research Actually Says (Without Meaning To)

When Scholz couldn't find much lived-experience-led work on aphantasia, he designed his own study—a discourse analysis of how the condition is talked about across scientific research papers, podcasts, TikTok, YouTube, Reddit, and online forums.

He's careful about what discourse analysis is, and isn't. "It's not necessarily saying, this particular person said this, and therefore they're bad, or they're stigmatizing, or they have the wrong views," he explains. "Often these discourses actually just become so normalized and automatic that we don't even realize that we might be using them in ways that do position aphantasia as something less than."

What he found was a pattern. In peer-reviewed scientific literature, aphantasia was described with words like "malfunction." Papers raised the question of whether it was a disorder. Some articles explicitly said they weren't calling it a disorder—and then, in the next breath, suggested some people might want to fix it.

"It's really telling that there was almost a default assumption that this was a negative," Scholz says. "That sort of permeated the published articles that we reviewed."

The three words that titled his paper—disordered, deficient, dehumanized—aren't labels he invented. They're the flavors of framing he kept running into.

The "Dehumanized" Part

The word dehumanized sounds extreme. Scholz chose it deliberately.

"What concerned me was when I started seeing implications that some people were making that people who didn't produce visual imagery couldn't love," he says. "People talked about feeling bad about their loved ones because when they were away from them, they couldn't visualize them. Whereas—I know I loved my loved ones without needing to see their faces."

Ebeyer underscores how corrosive this framing can be for aphantasics encountering it: "You can only imagine the aphantasics reading that being like, 'I don't love properly."

It's an extreme example, but it reveals something about how deep the picture-thinking-as-normal assumption runs. The leap from "you don't have visual imagery" to "you can't love" only makes sense if you believe mental images are where loving happens.

Different Isn't Disordered—But How Do We Say That?

Ebeyer raised the hard question directly: aphantasia is statistically uncommon. Most people do visualize. How do we acknowledge that aphantasics are outliers on a distribution without slipping into the language of disorder?

Scholz's answer was to reject the binary altogether. He recalled a recent hike with two friends who were both visualizers. "The more that we spoke about it over this several-hour hike, the more I realized there's actually quite a bit of diversity in the way that they were saying that they perceived visual imagery. It sounded to me like one of my friends had a very vivid visual imagination, and the other one, it wasn't so vivid."

"I worry a little bit about the way that putting that into a binary almost homogenizes all aphantasic and all-phantasic experiences."

Ebeyer has seen the same variation inside the aphantasic community through the Network's monthly community meetups. "If there is one constant or one thing that runs through all of them, it's the fact that even though we're all aphantasic in this group, our experiences are so dramatically different. Someone will say, 'I'm terrible at directions because I can't visualize them.' And then someone else will say, 'Well, I'm great at directions. I don't visualize them, but I get at this a different way.'"

Framing aphantasia as one thing—or framing visualization as one thing—irons out the variation that actually matters most.

A Strength, Not Just a Difference

Scholz isn't interested in simply replacing "deficit" with a neutral term. He wants to lean into what the absence of mental imagery actually enables.

"I want to lean into some of the strengths of my experience of not producing visual imagery," he says. As a lecturer, he thinks his aphantasia may be a professional advantage. "My job is about teaching students and really thinking through how best to communicate concepts to students who may not be on the same level of perception as me. Even before I knew what aphantasia was, I was often aware of differences in the ways that I was communicating to my students compared to some of my peers."

Ebeyer adds a nuance that comes up often in the Network's conversations: imagery itself can be double-edged. "I think the more you learn about mental imagery, the more I've come to think that it can be a double-edged sword. There's potentially upsides, and it's easy to romanticize those—but there's also some potential downsides."

Shortly before the interview, a piece in The Guardian about hyperphantasia had flooded his inbox with messages from people with unusually vivid imagery describing a different kind of struggle. "I can't get these images out of my head. I wish I had an easier way to stop them."

Wanting to experience visualization out of curiosity is not the same as being broken without it. Scholz and Ebeyer agree: those are two very different framings, and the distinction matters.

What Lived-Experience-Led Research Looks Like

For Scholz, the path forward is not just better language. It's a different structure for how aphantasia research gets done in the first place.

He traces the idea back to a formative experience more than a decade ago in a small mental health research centre in Australia. Three researchers were funded: Scholz as a psychologist, his boss as a nurse, and a third position funded specifically as a lived experience researcher—someone whose primary qualification was their own experience of mental ill health.

"Everything we did was done collaboratively and in a way that took on board the lived experience perspective in a way I don't see as very common in research more broadly," he says. "It really enriched my research program."

The conventional hierarchy in health research, Scholz explains, tends to place doctors at the top, then nurses and allied health professionals, with lived experience often "external to the hierarchy altogether." Even when researchers talk about co-designing with people who have lived experience—a meaningful first step—it's rare to see lived experience leading the research agenda from the start.

In aphantasia, a lived-experience-led approach might look like this: people with aphantasia shaping the research questions, deciding what's worth studying, designing the surveys, interpreting the findings, and framing how results get communicated back to the community and the public.

Surveys Built on Assumptions That Don't Fit

Ebeyer offered a practical example of why this matters. "I can't tell you how many times I'll receive emails from people who say, 'These questions just didn't make sense for my experience. I didn't know how to answer these because they made assumptions about the experience that don't necessarily translate to one of the available answers.'"

The classic case is the VVIQ—the Vividness of Visual Imagery Questionnaire—where the word vivid itself trips up some aphantasics. "There are many non-visualizers who will say, 'I remember it vividly.' That doesn't mean, 'I picture it vividly.'"

When the instruments used to measure aphantasia are built on assumptions visualizers take for granted, the data inherits those assumptions. Scholz would like to see that corrected at the design stage: "I'd love to see a survey being designed by somebody with aphantasia taking that lens, because I think the questions might be slightly different. Similarly, I'd like to see teams of researchers collaborating with people with lived experience of aphantasia to interpret their findings."

Why This Paper Ended Up in Mad Studies

Scholz published his analysis in the Journal of Mad Studies, and the choice of venue was deliberate. Mad Studies is a movement that pushes back against what Scholz calls the "primacy of biomedical approaches"—the assumption that medical and scientific frameworks should always be the default lens for understanding human variation.

"What's important to us might be quite different" from what researchers assume, he says. "Psychologists for so long have dominated exactly what is asked in the mental health research landscape, and it often doesn't map onto what people actually need. The kinds of questions psychologists or psychiatrists are asking are things like, 'How does this condition come about? How do we fix it? How do we medicate for it? How do we treat it?' Whereas the people experiencing mental ill health are often more concerned with, 'How can I function? How can I prioritize my relationships? How can I balance my daily living?'"

Aphantasia is a very different context, he's quick to note. But the parallel holds: the questions researchers ask reflect their own priorities, and those priorities don't always match what the community itself needs to know.

The Opportunity in a Young Field

If there's optimism in all of this, it's that aphantasia is still young.

"Aphantasia wasn't given a name until 2015," Ebeyer notes. "It's growing rather quickly, but it's not like there are deeply entrenched experts and people who have been doing this for their whole career. There is actually opportunity in the space to maybe do something different—to include more of that community voice in how some of the work gets done."

For Scholz, that opportunity is exactly why this conversation matters now. The language we settle on, the questions we decide are worth asking, the assumptions we encode into our instruments—these are being established in real time. They don't have to calcify the way they have in older fields.

Different, Not Less

The paper's title is provocative on purpose. But the argument underneath it is quieter and more constructive: aphantasia isn't a condition in need of treatment. It's a variation in human experience that is still waiting to be understood on its own terms—by the people who actually live it.

"Different doesn't mean bad," as Ebeyer put it.

As Scholz's work suggests, getting that distinction right may require rethinking not just what we say about aphantasia, but who gets to say it first.

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Dr. Brett Scholz is an associate professor in the School of Medicine and Psychology at the Australian National University in Canberra. His research focuses on lived-experience-led approaches to health policy, health services, and health research across mental health, palliative care, and—most recently—aphantasia. His paper on the discursive framing of aphantasia was published in the Journal of Mad Studies.