The Problem With Expecting Person-First Language When Talking About Disability

It was the second time a stranger approached me about my daughter’s Down syndrome. Both times it caught me so off guard, I felt like I had just received a swift kick to the gut.

The first time, we were on our way home from doctors’ appointments, exhausted and hungry. We stopped to eat dinner at a buffet restaurant. It was pretty late and we were enjoying watching our daughter eat cottage cheese with apple butter, a real hit, when this group of older folks walked by and ooh’d and ahh’d over her. Of course.

Then one gentleman said, “I have 19 great grandchildren, one with Down syndrome too.” He proceeded to talk about his granddaughter, beaming while he spoke. My husband and I were flabbergasted. We couldn’t understand how this man could see her Down syndrome. We were kind of sad because we wanted people to see how cute she is, how social she is, not Down syndrome.

The second time I was leaving the store with my daughter, talking to her about keeping her hat on because it was cold outside. A man picked up his pace to catch up with us and said, “is she a Down syndrome baby?” I instantly bristled and replied with a big smile, and a protective hand on her back, “yes, she does have Down syndrome.” He smiled back, I am pretty sure his smile was more genuine than mine, and said, “we have one too, he is 28 now and we couldn’t imagine life without him.” I stepped up my pace, called back over my shoulder something like, “yeah, they grow up so fast, don’t they? Have a wonderful day.” I added the wonderful day part at the last moment, because I realized I was being kind of a jerk. He was being nice, making a connection with one of his “people,” and I was offended.

Offended? Good grief, isn’t that half of what’s wrong with the world today? We get offended by a kind gesture, by good intentions. We’re so inundated with negativity, we can’t recognize a good thing when it’s in front of us. I was offended because he was one of the lucky few and he clearly did not know the “right” way to speak about Down syndrome — you know, the person-first way. The way I have been conditioned to think is the “right” way. But in reality, it’s not the right way, nor is it the wrong way. It’s one of the ways to address Down syndrome.

Both these men recognized my daughter’s Down syndrome and tried to connect with us for a brief moment, sensing that we were kindred spirits, part of the lucky few. And both times I ignored their overtures, irritated that the first thing people would strike up a conversation about was her Down syndrome. Sad because I couldn’t believe someone felt confident enough in her features to suggest she had Down syndrome.

When I recognized all this, I was heartbroken that I would have these negative feelings about people addressing my daughter’s Down syndrome. I couldn’t understand why I had these feelings. It’s not like I hide the fact she has Down syndrome. I am proud of every ounce of her. But I think these awkward feelings are a byproduct of the world around me.

From her diagnosis during pregnancy until now I have endured everyone’s views about Down syndrome — the doctor who acted as though she wasn’t worth much, a gamble a best; the people in the world who are shocked by the fact that people with Down syndrome can be successful at things; the sad faces from people who think Down syndrome is a major limitation; and the constant push for person-first language in the Down syndrome community.

I was having knee jerk, bitter reactions when people recognized Down syndrome in my child. My heart felt stabbed when someone recognized Down syndrome in my child. From the doctors making me feel she wasn’t worthy to people in the community dictating that Down syndrome should not define a child, the world has conditioned me that having Down syndrome is not a good thing. And I let it.

It all has a negative tone.

I hear people in the community saying all kinds of things like, “notice my child first, talk about how cute her pigtails are or how blue her eyes are; don’t ask if she has Down syndrome.” I have read posts online where people have been upset at the use of “Down syndrome baby.” They believe people need to be educated and corrected to use person-first language, using arguments like, “if someone has cancer, you don’t call them a cancer patient; if someone has migraines, you don’t call them migraine sufferer.” Actually we do say these things, a lot, and it’s not considered derogatory — at least not widely so.

I think my child is awesome, her Down syndrome included. In fact, I think she is above average in the awesomeness category in part because of her Down syndrome (I’m biased of course). Her Down syndrome is responsible for her slightly slanted eyes, her petite cherub face, her rosebud lips and her folded ears. All are beautiful physical attributes.

I am proud to say Down syndrome is one of the many, many things that help define who she is as a person. I don’t always feel the warm fuzzies of pride though, because the negativity around me about Down syndrome has bled into my feelings, stifling those warm fuzzies. And that is something I need to change. Immediately.

I don’t want to feel shamed when I describe my child as a T21 kiddo or a Down syndrome baby. I don’t want to feel like I need to “correct” someone who says “Down syndrome baby.” I have noticed the discussion around person-first language can be fierce and judgmental. I don’t want to be judged and I definitely don’t want to be “corrected” to the person-first way. If people want to use person-first language, by all means do it. But I feel it borders on entitlement to say that everyone should be using it and if they are not, they are uneducated and rude. That’s just not fair.

I do not want to remind other people that my child is a person by framing my sentence a particular way. To me she isn’t a “person first.” She is a person. Always. I don’t want to use words like “differently-abled” to make her feel worthy; she is worthy regardless of ability or disability. I want to beam with pride right back at those people who recognize my child and our family as part of the lucky few. Next time. Next time I will.