(I’ve written about this before, but I think it is worth mentioning again.)

It happens all the time. Someone refers to my “Down syndrome child” or says, “They have a child who is Down syndrome,” or “She’s having a Down’s baby.” Or I read it in Time magazine or a newspaper article. Before Penny was born, I didn’t think twice about the language we use as a culture to talk about people with disabilities. But even when she was an infant, I knew that there was something off when I referred to her as a “Down syndrome baby.” I was putting the em-PHA-sis on the wrong syll-A-ble, as my grandfather would say.

Last week, we received a notice for a workshop about “Embracing Special Needs Children.” The purpose and content of the workshop look fabulous, but the language prompted Peter to respond:

… I think language makes a difference. This isn’t something we’d ever thought of before Penny was born, but we quickly came to see a big difference between seeing Penny as our “special needs daughter” or “Down syndrome daughter” and seeing her as “our daughter with special needs”. 95% of the time that people with special needs are referred to–by friends and family, by the media, by other families with children with special needs, you name it–the formula is, as it was in the announcement, “special needs children”. It’s not used intentionally but it does place the diagnosis, if there is one, ahead of the person. In our experience, it perpetuates the tendency to then see the special need first, rather than the human. Although there are some other examples of where this happens in society, people with special needs receive this kind of unintentional-but-powerful categorizing more than anyone else.

The ramifications of moving the human first are, in our experience, incredibly important, both within the church and outside of it. It helps, over time, to undo some of the very unhelpful stereotyping out of which most of us (and I do include myself in this) think about and act towards people who are different from the majority–in this case different in their physical or cognitive ability (and even the degree to which people are actually “disabled” is increasingly up for question–simple procedures that close previously debilitating heart conditions, the average lifespan of people with Down syndrome increasing from 30 to 55/60 over since around the 1970s, and the average IQ of people with Down syndrome increasing from something like 20-40 to 60-80 over the same time) . Making the move to “our daughter with Down Syndrome” has helped us, we hope, to allow Penny to be Penny–to be the child and adult God wants her to be–rather than to see her first through the lens of Down syndrome and what we ought to expect from that.

I can’t say it any better than that.