We’ve all seen the headlines: “Breakthrough discovery in Alzheimer’s research” or “Promising new drug for chronic pain.” But look a little closer and you might notice something missing. Or rather someone.
Too often, the research that shapes our care, our medications, and our medical guidance doesn’t fully include people like us especially if we’re disabled, chronically ill, neurodivergent, female, or intersex.
Whose Bodies Are in the Lab?
Historically, the vast majority of medical research has centered on one specific demographic: able-bodied white men.
Why? Because their bodies were considered the “default.” Everyone else women, racialized folks, people with disabilities, LGBTQIA+ individuals were seen as variables that would “skew” the results.
For example: Until recently, most drug trials were done on male mice. Female mice were excluded because their hormonal cycles were deemed too complicated. Sound familiar?
This isn’t just bad science, it’s dangerous. It means medications, treatments, and even diagnostic tools might work differently (or not at all) for people who weren’t part of the testing pool.
The Cost of Being Left Out
Lack of representation in research doesn’t just make for awkward gaps it can literally put lives at risk:
- Women often present differently than men in heart attacks, yet most studies focus on male symptoms.
- Many autoimmune conditions disproportionately affect women and marginalized genders, but they’re underfunded and understudied.
- Intersex individuals are almost entirely left out of research, leaving major gaps in safe, affirming care.
- People with disabilities, especially cognitive or physical disabilities are rarely included in clinical trials unless the study is about their specific disability.
- Disabled people who are racialized or queer? Even less likely to be represented.
My Story Isn’t Just an Outlier — It’s a Pattern
Let me tell you something from experience:
I’ve had freezing agents wear off 20 minutes after being injected—meds that are supposed to last an hour or more. No one can explain why. I’ve had doctors question whether I was in pain at all because I “didn’t act like it.”
My partner, who is intersex and has epilepsy, has been passed around from one neurologist to another—because no one wants to be “responsible” for managing care they don’t understand.
And more than once, I’ve had medical staff dismiss me entirely—from assuming a broken wrist was just a sprain, to brushing off a major knee injury as “not that bad” because I didn’t show up at the ER immediately.
These aren’t rare stories. They’re shared in whispers in waiting rooms, in support groups, in late-night texts with friends who are just so tired of being doubted.
How Research Can (and Must) Change
We need medical studies that actually reflect the people who live in the real world:
- Include disabled bodies even (especially!) when they’re not the “target” demographic
- Study hormonal variations instead of erasing them
- Research care for intersex individuals that’s based on autonomy and consent, not outdated assumptions
- Account for race, gender, and comorbid conditions when designing trials and interpreting results
And maybe most importantly listen to lived experience.
Some of us have been living with and managing complex health needs for decades. We’re not just patients—we’re experts in our own bodies.
If You’re Not Represented, You’re Not Protected
Medical research shapes everything: diagnosis, treatment, medication doses, even what doctors are taught to look for.
If the studies don’t include people like you disabled, racialized, queer, neurodivergent, intersex, then the system doesn’t truly serve you. It guesses. It makes assumptions. It gets it wrong.
And sometimes, those wrongs have lasting consequences.
It’s Time to Be Counted
We can’t undo centuries of exclusion overnight. But we can:
- Push for inclusive research funding
- Support disabled, queer, racialized, and intersex researchers
- Tell our stories so future studies have no excuse not to listen
This isn’t about being included for inclusion’s sake.
It’s about making medicine safer, smarter, and more accurate for everyone.
Because when science forgets to count us, it fails us.
And we deserve better.