“Please do not tell me, Doctor”: Rethinking How We Talk About Disability

Please do not tell me, Doctor, that my baby is disabled.
It is such a leaden word to hang around such a young neck.
This medical label you would use (as if a label were necessary)
speaks only of what she cannot and possibly will not do.

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These powerful lines stop us in our tracks. They speak not only to the heartbreak of a difficult diagnosis, but also to the deeper discomfort with how society—and particularly medicine—frames disability.

In four short lines, the speaker voices what many parents and individuals feel: that a clinical label, while perhaps useful in certain contexts, too often overshadows the complexity and fullness of a person. Especially a child.

The Weight of Words

Words like “disabled” carry more than clinical meaning. They carry history, bias, fear, and stigma. When we describe someone primarily by what they cannot do, we reduce their identity to absence, to lack. We forget that behind every diagnosis is a person with preferences, relationships, dreams, and talents—some visible, some not yet known.

The phrase “leaden word” perfectly captures this. A word that was meant to help—by opening up access to services or support—can feel instead like a burden, a label that drags behind a child like an anchor.

Labels: Necessary but Not Sufficient

There’s no denying that medical labels serve a function. They help categorize needs, open doors to therapy, educational support, and legal protections. But when labels become the entire story, they begin to erase the child—or adult—beneath them.

This tension isn’t new. Disability rights activists have long critiqued the “medical model” of disability, which defines people by their impairments. In its place, many advocate for the “social model,” which says that people are disabled not by their bodies, but by inaccessible environments, rigid systems, and unyielding attitudes.

The Power of Perspective

The excerpt is also a call to reframe how we see disability. What if instead of immediately asking what a child won’t do, we asked: What will bring them joy? How do they experience the world? What do they teach us about patience, persistence, or presence?

Parents of disabled children often become fierce advocates—not just for services, but for dignity, respect, and recognition. They learn, sometimes painfully, that systems are quick to categorize and slow to see nuance.

Moving Forward with Care

So what can we do?

Choose language thoughtfully. “Disability” isn’t a bad word—but context, tone, and intent matter. Always centre the person, not the label.

Listen to disabled voices. People with lived experience are the best guides to understanding what it means to live fully, with or without certain abilities.

Challenge assumptions. Ask yourself what possibilities you might be closing off when you reduce someone to a diagnosis or deficit.

Celebrate difference. Disability is part of human diversity. It’s not a flaw in the design—it is the design.

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Ultimately, this poem reminds us that disability isn’t just a clinical category. It’s a deeply human experience—one that deserves more than a checkbox or a prognosis. It deserves understanding, nuance, and above all, compassion.

At PerVigeō, our team know that children are so much more than their challenges. We love to hear what makes your child smile, what makes them laugh, what brings them joy; and as parents what you dream for their future.

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