I was born with a syndrome (or as I sometimes call it: a rare disease). Does that mean I’m disabled? Not necessarily. You could have a syndrome that isn’t disabling, and you could have a disability that isn’t caused by a congenital syndrome. You could even be a like me — someone who was born with a disabling syndrome/disease but doesn’t always see it as a disability.
Think about it this way: my hands and arms are severely impaired, but I’m usually not disabled in my own home. My electric can opener makes cooking easy. I use a wine glass because I can safely hold its stem. Every door in my apartment has a handle. In my own home, we adapt to my needs and desires. The word around me doesn’t. When I can’t open a door knob at a public place, I’m pretty disabled. When people don’t pick me to fulfill tasks because they assume I don’t have the necessary abilities, I’m disabled. When people refuse to make accommodations for me, I’m disabled.
I often write “disease/disability” or syndrome/disability because I always have a syndrome, but I don’t always see the syndrome as a disability. I’m usually reminded that it is a disability when someone or something negatively points it out or assumes that I physically can’t do something. For this reason, I call my impairment by the term I’m most familiar with: a syndrome. Other people, however, may prefer other terms! In fact, some people really don’t like the term “birth defect,” but I’m personally comfortable with it because it’s the term my doctors used when I was growing up to describe my congenital syndrome. When you’re conversing with someone who has a syndrome/disease/disability you probably won’t know the person’s preferred terminology. That’s okay! Get to know the person, listen to the person, and let friendship with the person create a space to ask about what the person prefers.
My advice: again, get to know the person and listen to the person’s story. Pay attention to the terms a person uses. Be interested in the person rather than the person’s disease/disability because the person is SO MUCH MORE than the disease/disability. And we can learn quite a bit from one another when friendship gives us the space to converse about our diverse experiences.
For more advice on terminology and terms to avoid, see these helpful articles: