Its a term many of you won’t have heard of before. Quite simply it means referring to a person not by a medical condition or a disability they might have, but rather by their name. I’m sure most of you (especially of my vintage!) will have heard terms like ‘that Down’s kid’ or even worse ‘that Mongol kid’ to describe a person who has Down’s Syndrome. Its about putting the person first – about seeing the person not the disability. This might sound obvious to us in the supposedly enlightened, liberal, accepting 21st century, but trust me this kind of labelling still happens. A lot.
When our daughter was diagnosed prenatally with Dandy Walker Syndrome, we embarked on a steep learning curve. We’re still on it and probably always will be, although its not as steep any more. But we are still on occasion brought up short by attitudes towards people who have disabilities. When she was just six weeks old, I brought her for the BCG vaccine, and while waiting in the reception area of the clinic I was shocked and a little hurt to hear one nurse refer to my child as ‘the Dandy Walker baby’ when speaking to another nurse. Bear in mind I was only six weeks after giving birth and my hormones were all over the shop so it took very little to upset me but this really shocked me. When we went in for the vaccination, I mentioned this and just said that “you know she has a name, she’s not the Dandy Walker baby”. It was kind of brushed off with the comment that “its such a rare condition [true] and we see so few babies with it [true]” None of that is good enough reason to label my child. Fionnuala is Fionnuala. She has Dandy Walker Syndrome, she is not Dandy Walker Syndrome. You can find out more about this via Lose the Label which is all over social media
You never hear “that asthma kid” or “that cancer bloke”. We seem to understand that a person who has asthma or a person who cancer is so much more than their respective medical conditions. (And I just want to point out that I am not belittling either asthma or cancer here) But many people still think its ok to describe a person who has a disability by that disability. Its not. Fionnuala, my daughter, is funny, can be very cheeky in a cute way, is very affectionate, has a hot temper, loves school and books, adores music and her current favourite food is carrot cake. THAT’S who Fionnuala IS. Dandy Walker Syndrome is what she HAS. Person First Language. Remember it. Use it.