Say it with me: Disability is not a bad word

When people talk about hemophilia, some deliberately avoid calling it a disability. Instead, they’ll say “a medical condition” or “a health challenge,” as if disability were a negative label. Some who embrace the positive thinking movement even argue that people with hemophilia shouldn’t see it as a disability, pushing the idea that they should overcome their limitations at all costs.

While there’s nothing wrong with striving for a full and active life, ignoring reality doesn’t make hemophilia’s challenges disappear.

Many hesitate to use the word “disability” because society often equates it with something wrong or bad, while being “normal” — meaning able-bodied — is seen as ideal. This thinking fuels ableism, the belief that people without disabilities are inherently more valuable or capable than those who have them. But disability isn’t a flaw; it’s simply a different way of existing in the world.

For those in the hemophilia community, disability is more than a diagnosis. It shapes daily life. Managing treatment schedules, dealing with joint damage, and navigating mobility limitations aren’t occasional struggles; they’re constant realities. Some days are manageable, while others bring pain and restrictions that make even simple tasks difficult. Bleeding episodes are unpredictable, and treatment is essential to prevent serious complications. Yet many still resist calling hemophilia a disability, as if doing so would diminish the person living with it.

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I’ve faced similar resistance with my own disability, attention-deficit/hyperactivity disorder (ADHD). Someone once told me that identifying with ADHD would limit me, as if acknowledging it meant I’d stop striving for progress. The assumption? That I’d use it as an excuse rather than working to manage it. But that’s not how disability works. No amount of willpower can erase the challenges ADHD brings. What I can do is learn to work with it, understand my needs, and advocate for accommodations that help me function better.

The same applies to hemophilia. Recognizing it as a disability doesn’t mean giving up. It means making room for necessary adjustments and pushing for inclusion and accessibility. It means advocating for policies that support those with hemophilia, ensuring fair treatment in schools and workplaces, and securing insurance coverage and accommodations.

The #SayTheWord movement, started by community activist Lawrence Carter-Long, urges people to stop avoiding the word “disability.” When we refuse to say it, we reinforce the idea that disability is something shameful or hidden. This erasure has real consequences. If we can’t even name the barriers people with hemophilia face, how can we expect society to address them?

Disability is not a bad word. It’s a reality for millions, including those with hemophilia. Embracing disability identity isn’t about glorifying suffering. It’s about acknowledging real challenges, advocating for rights, and ensuring people get the support they need. The hemophilia community deserves to be seen, heard, and included — not erased.

So let’s say the word. Let’s respect it. And let’s work toward a world where disability is acknowledged, not dismissed.

Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to hemophilia.