As a child, I had no real awareness of my disability. I didn't know exactly what it was; I simply sensed that I was different from the others, and that certain experiences — like playing the claves during music class — were out of reach for me. Then came an episode I still remember today. It was the 1990s, and I was at a summer camp. At one point, another child called me "handicapped." He didn't say it out of malice or with any intent to offend — his tone was completely neutral. He had appointed himself the group's "wise one," and with that word, he put an end to the questions and whispers among the other children about my condition. At the time, the word left me almost indifferent: to me, it was simply a way of explaining something I still couldn't quite understand myself.
As I grew up, though, I began to question the words people used to describe me and my disability. I noticed that some fell gradually out of use, while others took their place. I heard "invalid," "handicapped," "differently abled," until arriving at the expression that feels closest to me today: "person with a disability," because it puts the person, rather than their condition, at the center.
And yet I also came to understand that the problem is almost never the word itself. It's the context surrounding it. The same expression can be spoken with respect, with awkwardness, with compassion, or with contempt. And it's these nuances, far more than vocabulary, that make most of the difference.
Looking back on that child from summer camp, I feel no anger today. Quite the opposite. In his own way, he was trying to answer a curiosity that everyone had but no one had the courage to voice openly. We were children, and we used the words we knew. If that same word would sound out of place to me today, it's also because, in the meantime, the way society talks about disability has changed.
What has changed above all is who takes part in the conversation. For a long time, disability was discussed almost exclusively by doctors, teachers, institutions, or family members. Today, more and more often, it's people with disabilities themselves who tell their own stories — through associations, books, newspapers, magazines, and social media. They don't just talk about their limitations, but also about work, relationships, sport, culture, everyday life. In other words, they talk about their own lives.
I too, over time, have learned to describe myself differently. As a child, I let others find the words to describe me. Today, I prefer to choose my own. Not because a perfect or definitive term exists, but because every person should have the chance to define themselves before being defined by others. That's why it bothers me today when someone claims to explain what my problem is, or which word I should use to describe myself. Not because I deny my disability, but because I believe no one can describe a lived experience on behalf of the person living it. That's why I think that if, as a child, I had had more opportunities to understand myself and to be understood by others, back at that summer camp I wouldn't have needed someone else to explain who I was.