Sometimes word games can become mind games.
My 11-year-old daughter has Down syndrome. My instinct has always been to put it exactly that way—Down syndrome is something she has, not something that has her or something she is. Does that seem obvious? These are actually hotly debated questions. People who think and write about disability have wildly different opinions about whether to promote the use of “people-first language”— e.g., a person with autism—or “identity-first language”—an autistic person. Depending on who you ask, there is only one way to show respect. The other is a terrible insult.
It took a decade for me to learn when I was supposed to be incensed about the words people use to refer to my daughter. Of course I already knew that “retarded” and “mongoloid,” which were regularly used when I was young, were out-of-date and off limits. But then I learned some new things: I must never let the phrase “Down’s child” pass without launching into a lecture denouncing “people-first” language. Further, I was supposed to push back any time I heard someone say “most kids with Down syndrome do X,” because that formulation minimizes my daughter’s unique individuality. She has “special needs” and needs “support,” I learned, but she is not “a blessing” or an “inspiration” because those terms don’t do justice to the complexity of her personality and her diagnosis. It was a period of intense education, but after 10 years I was getting the hang of it.
Come to find out, I was all wrong.
Earlier this year, Sesame Street introduced—after much research and discussion with diverse families—the character Julia, “a 4-year-old with autism.” The Twitterverse struck back. “#ActuallyAutistic people (like me) prefer identity-first language,” wrote Twitter user April Spectrum, “Julia is an autistic four-year old.”
Surely, I thought, this was a minority view. Apparently not. Many of those with autism do, in fact, prefer identity-first over person-first language. Lydia Brown, a Georgetown graduate who writes the AutisticHoya blog, seems to be one of the most quoted self-advocates on the matter. Here’s a key passage from Brown’s popular post:
[W]hen people say “person with autism,” it does have an attitudinal nuance. It suggests that the person can be separated from autism, which simply isn’t true. It is impossible to separate a person from autism, just as it is impossible to separate a person from the color of his or her skin. It is impossible to affirm the value and worth of an Autistic person without recognizing his or her identity as an Autistic person. Referring to me as “a person with autism,” or “an individual with ASD,” demeans who I am because it denies who I am.
This way of thinking leaves me deeply conflicted. While I will always strive to be respectful in my conversations about disability, policing speech is not my top priority. I’m more interested in interaction. Only interaction can change minds. Experience has taught me that people who are worried about getting scolded for saying the wrong thing often avoid interaction altogether.
I’m not so naïve as to think that everyone who meets my daughter will come away with a different attitude toward Down syndrome, disability, or the dignity of human life. But what is the alternative? Honestly, I would rather someone say “Is this your retarded child?” than not speak to me out of fear of using inappropriate language.
I know people are curious about us. When I’m out and about with my family, they often stare at my daughter. She has some unusual tics and behaviors, so kids especially are prone to gawk. But adults do it too, turning back furtively to size us up. I know that at least some of them would like to ask questions, or introduce their kids to my kids, but are afraid that they’ll get the terminology wrong or somehow offend me. It’s a pity. Is this what advocates for the disabled were hoping for when we started reproaching people for not using the right words?
The author of another recent blog post demands that we now banish “special needs” and use only “disability” or “disabled.” Not only is it hard to keep up with the new rules on language, but this kind of aggressive “advocacy” frightens and confuses people, many of whom are sincerely interested in supporting our families. Some writers recommend that we ask people how they would like to be addressed as a preventive against hurting their feelings. But if I have to work up the nerve to ask someone what non-intuitive words I’m supposed to use in order not to give offense, isn’t it likely I will just shy away from any conversation in the first place? Most people don’t think about these things as often as self-advocates, parents, and loved ones do.
I give the last word to the disability advocate Cara Liebowitz:
Though person-first language is designed to promote respect, the concept is based on the idea that disability is something negative, something that you shouldn’t want to see. After all, no one tells me that I should call myself a person with femaleness or a person with Jewishness. I’m a Jewish woman. No one questions that. Yet when I dare to call myself a disabled person, it seems the whole world turns upside down. That’s because gender and religion are seen as neutral, if not positive, characteristics. The idea of separating the disability from the person stems from the idea that disability is something you should want to have separated from you, like a rotten tooth that needs to be pulled out.
This is a tidy little argument. I’m almost convinced, except for the clear implication that the only safe choice to make in this busy, crazy world is never to notice, acknowledge, or discuss a person’s unique—and perhaps obvious—differences lest you reveal yourself as a terrible person who couldn’t possibly be an ally because you are too indifferent to remember what you may or may not have been told about which words to use.
Here’s another idea: How about we treat every human life as a dear soul, equally beloved by God (if you so believe), who deserves our full attention. Not to mention a second, third, or even fourth chance at choosing the right words. Sound good?