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.

13 thoughts on “Words Matter (a primer on disability language)

  1. chrissy

    well said, well said. though I still sometimes have to go back and correct what I type. But I’m aware, I’m aware. For example, So and so is a person with diabetes or with dementia, not my diabetic, demented client. . . mentally ill too! Don’t put that in front of people.

  2. I work hard to do this. My niece and nephew (they are 2 of my sister’s 4 children) have Autism. I often get confused. My sister doesn’t mind referring to them as “Autists” and when i catch myself referring to them as autistic instead of children with Autism, she often tells me that she knows what I mean, stop worrying about it.

    but then I figure it must simply be because we are family?? Or are the rules different for people on the Autism spectrum? More and more autism isn’t seen as a disability the same way Down’s Syndrome is (or maybe again…it’s just because I have family members with Autism so I read the language differently??)

    Either way, this is a good post and I don’t think it’s splitting hairs. Our society has stripped so much from everyone by reducing them to labels (“gay” or “lesbian” as opposed to individuals with Same Sex Attraction) — it removes their personhood in favor of one part of them and it’s not right.

    • I have a daughter with autism. From experience with many adults with autism, most of them prefer to be referred to as autistic, not all but many. To use Kate’s example of “person with cancer” vs “cancer person” (which is one three different adults with autism have given me) they do not consider their autism a disease but it informs the way they interact with others and how they live in the world/perceive the world etc. They feel like saying “person with autism” defines them as having something that is imperfect or undesirable. I tend to use the person-first language as it was what I was coached to use when my daughter was first diagnosed. She is considered very low-functioning and cannot tell me what she prefers as she is profoundly non-verbal, so my rule of thumb is to ask the individual how the prefer to be described or referred to if they are verbal enough to tell me (or can write etc). I was pretty militant about the person-first language for a long time in reference to autism until I met adults and higher-functioning teens and tweens who told me they found it offensive.

  3. Kyle

    I love person-first language! It isn’t splitting hairs, it is teaching and inviting them into a more loving and dignified way of speaking.

  4. Diana

    I love this! I think it is important to educate those of us who don’t have firsthand knowledge of the day to day life of people with “different abilities”! It is great to clarify the preferred “love language” YOU prefer, because it is different for different people. Not all people prefer the same terminology for the same “condition”…it’s like they’re individuals or something! 😉

  5. I’ve never thought about this, but I know when I’ve heard others refer to someone as an “autistic child” or “down syndrome child” it has always rubbed me the wrong way. You not only put that feeling into words but also gave me a way to say it correctly. Great post!

  6. Janet

    Well put. Thank you for sharing this with the world. We must never loose sight of the fact that all people are beautiful, whatever the state of our make-up.

  7. Abigail Green

    I appreciate you writing this. I have started writing for a children’s hospital and they are very clear about using people-first language.

    Also, I recently asked a friend of mine who has a son with Down’s what she would say to a child (like mine) who notices and asks about why her son looks/acts different from other kids his age. She was very thoughtful and non-judgmental in her response. But even better, she said it actually hasn’t come up that much for them. I wonder what your response would be?

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

This site uses Akismet to reduce spam. Learn how your comment data is processed.