January 2, 2026

When Lived Experience Is Treated as Bias

A stethoscope resting on an illustration of the Vitruvian Man
Photo by Marek Studzinski / Unsplash

Understanding epistemic injustice and the credibility economy in healthcare, policy, and everyday systems

The Double Bind

Disabled people are routinely told to self-advocate.

Know your body. Track your symptoms. Speak clearly. Come prepared. Be persistent. Don’t give up.

But when we do what we’re told—when we arrive with a history, a pattern, a theory of what’s happening—our knowledge is often treated as a liability. We’re “too close” to the problem. Too invested. Too emotional. Too subjective.

In other words: biased.

This is the double bind. Disabled people are expected to become experts in our own lives, and then punished for having expertise that did not come through the “approved” channels. The closer you are to what’s happening, the less you’re trusted to understand it.

That isn’t just frustrating. It’s a predictable form of injustice—one that shows up in healthcare, benefits systems, schools, workplaces, and policy debates. And once you can name it, you start seeing it everywhere.

The Mechanics of Epistemic Injustice

Philosopher Miranda Fricker popularized the term epistemic injustice: a wrong done to someone specifically in their capacity as a knower. In her account, there are two especially relevant forms: testimonial injustice and hermeneutical injustice.

Testimonial injustice is what happens when someone’s credibility is unfairly deflated because of identity prejudice—when a speaker is not believed (or not fully believed) because the listener has a socially structured reason to discount them.

Hermeneutical injustice is what happens earlier: when the shared interpretive tools a society uses to make sense of experience are missing key concepts—so people can’t easily explain what’s happening to them in a way institutions recognize.

Healthcare is a common site for both. Many disabled people can describe the feeling precisely:

  • You report symptoms and get reframed as “anxious.”
  • You track patterns and get labeled “obsessive.”
  • You describe functional limits and get told it’s “just stress.”
  • You bring context and get told it’s “anecdotal.”

The problem isn’t that clinicians use evidence. The problem is that institutions often treat experiential knowledge as inherently suspect—especially when it comes from people who already carry stigma.

Philosophers Havi Carel and Ian James Kidd have written about illness-focused versions of these harms—sometimes called “pathocentric” epistemic injustices—where the condition (and the social meaning attached to it) becomes a reason to discount the person describing it.

Bioethicist Jackie Leach Scully has also argued that disability frequently produces epistemic exclusion: disabled people are kept out of the spaces where knowledge is made, validated, and circulated—even when the knowledge is about our lives.

How “Objectivity” Becomes Gatekeeping

“Objectivity” is often presented as a neutral standard. In practice, it can function as a gate.

The trick is that “objectivity” gets defined as distance from the problem—which means the people closest to what’s actually happening are automatically suspect.

Here’s how the move works:

  1. A disabled person reports what’s happening.
  2. The institution reframes the report as subjective (“feelings,” “perceptions,” “beliefs”).
  3. The institution elevates its own perspective as objective (“evidence,” “clinical judgment,” “policy”).
  4. The institution treats its perspective as the legitimate one—even when the disabled person is describing the actual outcome in their body or life.

This isn’t limited to healthcare. It appears in disability determinations (“we need medical proof”), workplace accommodations (“we need documentation”), and public debates (“we need data, not anecdotes”).

And it’s not evenly distributed. The credibility penalty falls hardest on people already stereotyped as unreliable narrators: disabled people, women, and people of color.

We don’t need to rely only on stories to see this. There is a substantial research record showing disparities in how pain is assessed and treated across gender and race—especially in emergency settings. For example, research has documented race-linked differences in pain relief in U.S. emergency departments, with Black patients less likely to receive adequate pain treatment. And a 2024 paper in PNAS reports evidence of sex bias in emergency department pain management decisions that disfavors female patients.

So when disabled people talk about being dismissed, this is not merely interpersonal misunderstanding. It is a patterned credibility economy.

The Standpoint Paradox

There’s a deeper irony here.

A long tradition in feminist and critical social theory argues that marginalization can produce epistemic advantages: if you are forced to navigate systems that were not built for you, you often learn things about those systems that insiders never have to notice.

Disabled people live this.

You learn how bureaucracy really works when you spend six months fighting for benefits that you’re technically entitled to. You learn what “reasonable accommodation” means in practice when you’ve negotiated it at three different jobs. You learn what a hospital system optimizes for when you’re the one whose pain management gets delayed because “there’s no bed available.”

This is what standpoint theorists call the “insider-outsider” position: you’re inside the system (subject to it), but outside its design assumptions (not who it was built for). That position produces knowledge.

But the paradox is that the very position that produces this knowledge is used to discredit you as a knower. Being “too close” becomes the accusation that neutralizes what you can see.

This is why “bias” is such an effective dismissal tool. It doesn’t have to prove you’re wrong. It only has to move you out of the category of people whose knowledge counts.

What It Looks Like in Practice

A few recurring examples make the mechanism visible:

Chronic Pain and Stigma

Chronic pain patients are frequently filtered through suspicion: exaggeration, catastrophizing, drug-seeking. The label “pain catastrophizing” itself has become controversial—not because catastrophizing doesn’t exist, but because the term gets weaponized to dismiss the medical basis of pain, particularly for patients already facing stigma. Research on opioid stigma and chronic pain documents how this translates into patients being treated as untrustworthy and having pain systematically undertreated.

Gender and Race in Pain Credibility

Patterns like longer waits for pain relief, undertreatment, and credibility discounting aren’t random. We have decades of documentation that pain care often reflects bias, including disparities by race and sex.

“Evidence” Debates That Erase Affected People

In contentious policy and clinical disputes, institutions often treat the testimony of affected groups as inherently “non-objective,” while elevating outsider judgments as neutral. The Cass Review—an assessment of gender identity services in England—has become one prominent site of this debate, with substantial public critique over how it interpreted evidence and weighted (or excluded) testimony from trans people and their providers. Scholars affiliated with Yale Law School’s Integrity Project produced a detailed response analyzing these methodological concerns.

You don’t have to take a position on every contested domain to notice the recurring pattern: the people living the consequences are frequently treated as the least credible witnesses to what those consequences are.

Why This Matters

This is not only about bedside manner. It’s not only about “listening better.”

When lived experience is coded as bias, it reshapes what society is willing to know—and therefore what society is willing to change.

  • If disabled testimony is treated as unreliable, it becomes harder to document harm.
  • If harm is harder to document, it becomes harder to enforce rights.
  • If rights are harder to enforce, institutions can keep access “on paper” while limiting access in practice.

And institutions have reasons to maintain this arrangement: it’s cheaper to doubt testimony than to redesign systems, easier to question credibility than to change policy.

This connects directly to administrative burden. In my earlier piece, the argument was: paperwork isn’t a neutral byproduct; it can function as policy. Here, the parallel claim is: credibility isn’t a neutral byproduct either. It can function as governance.

Who gets believed shapes what gets researched, what gets funded, what gets written into policy, what gets enforced, and what gets dismissed as “just a story.”

How to Recognize the System Feature

Once you know what you’re looking at, you can spot it:

  • When a disabled person is told to “advocate for yourself” and then punished for doing it.
  • When “objectivity” is invoked to exclude the people most affected.
  • When expertise is defined so that experiential knowledge cannot qualify as expertise.
  • When testimony is discounted not because it’s false, but because of who is speaking.

That is epistemic injustice operating as a system feature.

The goal of The Crip Chronicle is to make these features legible—so disabled people have language for what we’re seeing, and so everyone else can stop mistaking structural exclusion for neutral process.

Learn More

Understanding Rights and Systems:

Healthcare Navigation:

For Healthcare Providers:

This article is by Zach Beaudoin, founder of DisabilityWiki.org and editor of The Crip Chronicle. The Crip Chronicle centers disabled people’s expertise and is grounded in disability justice principles.

Sources

Fricker, M. (2007). Epistemic Injustice: Power and the Ethics of Knowing. Oxford University Press.

Carel, H., & Kidd, I. J. (2014). “Epistemic injustice in healthcare: A philosophical analysis.” Medicine, Health Care and Philosophy, 17(4), 529-540. https://doi.org/10.1007/s11019-014-9560-2

Scully, J. L. (2018). “Disability and the thinking body.” In B. Inguaggiato et al. (eds.), Phenomenology of Bioethics, pp. 93-110. Springer.

Samulowitz, A., et al. (2018). “‘Brave Men’ and ‘Emotional Women’: A Theory-Guided Literature Review on Gender Bias in Health Care and Gendered Norms towards Patients with Chronic Pain.” Pain Research and Management, 2018: 6358624. https://doi.org/10.1155/2018/6358624

Staton, L. J., et al. (2007). “When race matters: disagreement in pain perception between patients and their physicians in primary care.” Journal of the National Medical Association, 99(5), 532-538.

Chen, E. H., et al. (2008). “Gender disparity in analgesic treatment of emergency department patients with acute abdominal pain.” Academic Emergency Medicine, 15(5), 414-418.

Samuelsson, H., & Malm, D. (2024). “Sex bias affects emergency department pain management decisions for patients with suspected acute coronary syndrome.” Proceedings of the National Academy of Sciences, 121(29). https://doi.org/10.1073/pnas.2320050121

Sullivan, M. J. L., et al. (2001). “Theoretical perspectives on the relation between catastrophizing and pain.” The Clinical Journal of Pain, 17(1), 52-64.

Barry, D. T., et al. (2010). “Stigma, prejudice, discrimination, and health.” The Lancet, 376(9743), 874-875.

Yale Law School. (2024). “The Cass Review: Data Integrity and Transparency Concerns.” Available at: https://law.yale.edu/isp/initiatives/wikimedia-initiative/litigation-clinic/cass-review

Collins, P. H. (1990). Black Feminist Thought: Knowledge, Consciousness, and the Politics of Empowerment. Routledge.

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Harding, S. (1991). Whose Science? Whose Knowledge? Thinking from Women’s Lives. Cornell University Press.

Wylie, A. (2003). “Why Standpoint Matters.” In R. Figueroa & S. Harding (eds.), Science and Other Cultures: Issues in Philosophies of Science and Technology, pp. 26-48. Routledge.