The Lucky Pumpkin

Phrasing. Musicians know all about it. There is a proper place to breathe when singing or playing an instrument to make the song flow nicely. If you phrase the song incorrectly, you can change the intention that the composer had when writing the piece. Well, phrasing can be an issue with language, too. My know-it-all parents just don’t seem to get it. They keep saying, “Downs’ kids,” when referring to kids with Down syndrome. I have told them that this is offensive, but they just don’t seem to care. Well, tonight, they were the “experts” on Down syndrome because they went to a conference yesterday. (Never mind that I have been to conferences, too, all of a sudden, they know more than me and everyone else!) Well, they were telling me all the info on the phone. (When they are on the phone, they have to use speaker phone since they seem to be joined at the hip now, and they can’t let the other one out of their sight. This makes it so hard to have a conversation. They keep cutting me off and they do not listen to my replies. They really should be talking to the wall, it would be easier on all of us.) As they were imparting their “wisdom,” they kept saying, “Downs’ kids,” and finally I said that, “I hope that you didn’t say that to the parents there. People in the Down syndrome community find that term offensive.” My mom just went off on a rant and really laid into me. She told me that, “All of the people at the conference said “Downs’ kids” .” I tried to explain my side, but they weren’t listening. So, I sent this email. It really explains my view of how the way you phrase something can show your intent.

Hi Mom and Dad,

First, I want to say that I am glad you went to the conference. It’s great for Emily to have everyone learning as much as we can so we can help her as much as possible.

Second, I have been thinking about what we talked about not referring to children with Down syndrome as “Downs’ kids,” and that I might not have expressed myself clearly. It is hard to hear each other well when we are on speaker phone, and sometimes things get lost in the conversation. When I said that, “People in the Down syndrome community do not like that phrase,” I should have said the I do not like that phrase. (I assumed that you would know that because as Emily’s mother, I consider myself a part of the Down syndrome community.) I know that you do not mean anything bad when you say “Downs’ kids,” but you should understand that it is offensive to many people, myself included. I find it hard to believe that the parents in the Mile-High Down syndrome group would call their kids “Downs’ kids,” although it is possible that you found one or two who do.

Let me tell you again why it is offensive. When you say, “Downs’ kid,” you are identifying the child by the disability. He or she is first and foremost a child, and should be seen as a unique individual who happens to have Down syndrome. If you say, “The child with Down syndrome,” then you are stating with your words that you see him or her as a person first. This is a huge struggle for people with Down syndrome because many people view them as being all the same. (People say that, “They are all so happy,” as an example. This is not true, because the rate of depression among adults with Down syndrome is very high.)

Would you have let my grandparents call me, “That fat girl?” when I was growing up? Even though it was true that I needed to lose weight, I’ll bet you would have found that offensive. Ask yourself why. Probably because calling me that reduces my worth to just my weight, and you knew that there was so much more to me than that one characteristic. This is the way I feel about Emily. She is a fabulous kid who just happens to have Down syndrome. She deserves her family to see her as the multi-dimensional person that she is.

The other problem with saying, “Downs’ kids,” is that the term “Down syndrome,” does not have an “s” at the end of “Down.” You probably heard at the conference that it is a syndrome that was first identified by a British doctor whose last name was “Down,” so the right way to say it is “Down syndrome.”

Hope this helps you to understand where I was coming from a little bit better.

Mary