What We Leave Out: Disability, History, and the Illusion of Neutral Information

Rethinking how information systems shape the stories we tell.

We like our heroes uncomplicated. Clear arcs. Defining moments. 

But when you look closely, you’ll start to notice something that becomes hard to ignore. Many of the people we admire most (leaders, artists, scientists) lived with disabilities, including non-apparent disabilities like chronic illness or mental health conditions. Yet, this information is rarely included in the stories we tell about these figures.

For example, Harriet Tubman experienced a traumatic brain injury as a teenager that resulted in lifelong seizures, chronic pain, and sudden sleep episodes. And yet, most of us learned about her as a fearless conductor of the Underground Railroad, not as someone navigating a significant neurological disability while doing that work.

• Frida Kahlo lived with chronic pain and mobility limitations after a severe bus accident, undergoing dozens of surgeries and often creating her work from bed.

• Florence Nightingale spent much of her later life chronically ill and largely bedridden while continuing to lead major public health and hospital reform efforts.

• Charles Darwin lived with chronic illness that caused persistent fatigue, nausea, and neurological symptoms, often limiting him to only a few hours of work per day.

• Rosa Parks lived with chronic pain and fatigue for much of her life, conditions that are rarely included in how her activism is taught or remembered.

These disabilities are not minor details from their lives. They often shaped to how these individuals lived, worked, created, and led. And yet, they are often absent from the story we tell about them.

Disability in historical narratives is often erased to preserve an image of strength, reframed as something they “overcame” or otherwise inspirational, or minimized so it doesn’t complicate the story. In each case, the result is the same: we inherit a version of history where leadership, brilliance, and impact appear to belong primarily to the able-bodied.

This realization was sparked by reading The Anti-Ableist Manifesto by Tiffany Yu. In one of the early chapters she mentions some notable figures, including a few I just mentioned, and how their disabilities have been downplayed or even intentionally erased when we tell their stories. 

This Isn’t Just a Storytelling Problem

This is also an information problem.

As an information professional, I’ve spent years thinking about how systems shape what we find and what we don’t. We know that what gets included in metadata, subject headings, and summaries determines what is discoverable and, ultimately, what is known. If disability is not indexed, tagged, or named, it effectively disappears from the record.

Search for Harriet Tubman and you will find “Underground Railroad” and “Abolitionists.” You are far less likely to find references to traumatic brain injury, seizure disorder, or chronic neurological symptoms. The absence is not because those facts do not exist. It is because our systems were not designed to surface them.

What I Learned Teaching Museum Studies

When I was teaching museum studies, I used to challenge my students to think about whose stories were missing or incomplete in the exhibits they visited or were designing themselves.

One exercise I returned to often was asking students to analyze a familiar historical story or setting on campus and consider: whose story isn’t being told here?

Students would start to notice what wasn’t there. Those of domestic workers, laborers, the people whose work sustained that historical setting but were not named or represented. In some cases, even illness, disability, or death that shaped the historical landscape was absent in the museum’s interpretation, despite being part of the historical record.

The goal wasn’t to add more information just for the sake of completeness. It was to recognize that omission is a form of storytelling.

The Myth of Neutrality

Information systems and cultural institutions often position themselves as neutral. But neutrality is not achieved by omission. When we exclude disability from the way we describe people and their work, we are making a choice. That choice reinforces a narrow definition of strength, capability, and leadership.

When disability is left out of our stories, we lose a more accurate understanding of historical figures. We reinforce the idea that success requires a certain kind of body or mind. And we limit representation for people navigating similar experiences today.

When we include it, accurately and without reduction, we gain something more honest.

We see a fuller picture of what human capability actually looks like.

What We Choose to Remember

What would it look like to design information systems that reflect the full complexity of people’s lives?

It might include more inclusive metadata practices that recognize disability as both identity and context. It could involve creating pathways that connect topics like disability, mental health, and resilience in more intentional ways.

This is not about redefining people by their disability. It is about refusing to erase it.

History is not just what happened. It is what we choose to record, describe, and make visible. If we want more honest systems and more inclusive narratives, we have to start asking: What are we leaving out? And what would it change if we didn’t?

Sources

Yu, Tiffany. The Anti-Ableist Manifesto: Smashing Stereotypes, Forging Change, and Building a Disability-Inclusive World. Legacy Lit, 2024.