What do you call someone with Down syndrome?

October is National Down Syndrome Awareness Month. So, what do you call someone with Down syndrome? 

This was a question I recall asking when our local organization’s executive director and a parent volunteer visited our home a few days after our daughter was born. We had been told in the hospital that she had Down syndrome and were sent home with unhelpful information explaining that “[BABY GIRL] has Down syndrome.”

Our local executive director explained to me the idea of “people-first” language. Rather than refer to someone as a “Down’s child” or a “Down syndrome person,” you recognize the person first, then the condition, e.g. a person with Down syndrome. It’s a very basic construct, but one that properly orders how you should view another human being. When you see a person with a condition, rather than defining that person by that condition, you first notice that this is a fellow human being who happens to have a particular condition.

If you ever want to create instant affinity with those who have loved ones with Down syndrome, use people-first language. They will notice and appreciate it.  Again, changing the language reflects the wisdom of Rosa’s brother Nick, quoted by President Obama when signing Rosa’s Law that changed all references to “mental retardation” to “intellectual disability:”

But I want everybody to hear Nick’s wisdom here.  He said, “What you call people is how you treat them.  If we change the words, maybe it will be the start of a new attitude towards people with disabilities.”  That’s a lot of wisdom from Nick.

But, let’s also appreciate what would be the best way to refer to someone with Down syndrome, or any other condition: by their name.

Often, people will find out I have a daughter with Down syndrome and, in an effort to display some understanding of our experience, will share that they know someone else who has Down syndrome: “Oh, you have a daughter with Down syndrome? The family down the street from us has a Down’s boy.” This is a natural exchange in our society and one that is said with the best intentions. But do we do this with other minority groups? “Oh, you know someone who is Black. There’s an African-American man at my work.”

Actually, I can remember a time when that sort of exchange did take place–but that was back in the 1970’s. It demonstrates that the acceptance of individuals with Down syndrome as equal human beings, deserving of the same respect–versus being defined by the number of chromosomes they have–still has a ways to go.

Using people-first language will help in that progress, just as eliminating racial slurs in common parlance helped in accepting greater racial integration.

If you want to know what to call someone with Down syndrome, starting with people-first language is a good first step, but then take the next step of getting to know their names and them as individuals.