Words Matter (a primer on disability language)

Colorado Cousins Trip 603First, I am fully aware that many people are going to look at this as splitting hairs.

I did, until my daughter came along.

How do you refer to a person with a disability? If you are like most people, you slap a label in front of the name: Julianna is a “Downs child” or a “Down syndrome girl.”

The practice encouraged by disability groups now is what we call people-first language. Re the great Wiki:

The basic idea is to impose a sentence structure that names the person first and the condition second, for example “people with disabilities” rather than “disabled people”, in order to emphasize that “they are people first”. Because English syntax normally places adjectives before nouns, it becomes necessary to insert relative clauses, replacing, e.g., “asthmatic person” with “a person who has asthma.” Furthermore, the use of to be is deprecated in favor of using to have.

The speaker is thus expected to internalize the idea of a disability as a secondary attribute.

Colorado Cousins Trip 436In the case of my girly-girl: she is a child with Down syndrome, not a Down’s child, a Down syndrome daughter, etc.

This is a subtle difference, I’ll grant you, but it’s important. Aside from disabilities, there is no other medical, educational or cultural status in which we refer to the condition first. Doing so makes Down syndrome more important than the person. You don’t go around saying “that cancer guy” or “that four-eyes woman.” In the first case we would consider it insensitive; in the second, insulting. In both cases, it reduces the person to a fraction of his or her true self. So why is it okay for disability–unless we actually do subconsciously think a disability makes a person “less than”?

County Fair 050 smallJulianna’s extra chromosome is an intrinsic part of who she is, one that impacts an awful lot of life–but not all. The basic things that underlie life are the same for her as they are for all the rest of us: eat, sleep, love, learn, live. Her disability is important, but it’s not the most important thing about her. She loves music, hates dogs, loves books and carousels and horses, is terrified of thunder, needs glasses, adores babies, had heart surgery, can read, cannot speak clearly, and is capable of making connections with the crustiest person she meets. To reduce all that to a label that comes first–“Down syndrome child,” “Downs child”–is to deny her the complexity of soul and personality that we grant everyone else.

The most important thing about her is the fact that she is…just like me, you, and everyone else we meet.