Someone shared the NDSS’s view on people first language on Facebook (click to view), and while I think it does a good job talking about people first language, I wanted to talk about one more thing that is not mentioned. That phrase is “high functioning,” and it’s a phrase that I struggle with defining, reacting to and understanding. I don’t think I’m the only one either. I know when someone says it, it is usually meant to be positive, perhaps even a compliment, but there is something about it that rubs me the wrong way.
But the phrase comes to mind easily, even for me. In fact tonight, we were at a local support group event, and I was talking with a mom whose son is a couple months younger than Luke and is walking already. I was truly happy for him and very impressed with his gross motor abilities, so I said that he is doing so well walking! But the thought came to mind about how “high functioning” he is.
Luke’s therapists also use it frequently, and I never correct it because it tends to be more clinical in context and they mean well if they are using it regarding Luke. But there’s something sterile about it, possibly demeaning depending on the tone and context on how it’s used. Kind of like someone saying “you are so smart” when talking to an older child who states something they obviously know.
I also witnessed an adult with Down syndrome cringe visibly when someone used the term with her directly by saying she was so high functioning. I’m sure that it was meant to be positive in nature, but you could see her discomfort with her wince when they said it who was obviously impressed by her. I also was quite taken with her. She was an impressive woman, who was leading a webinar for an e-conference for Down syndrome, so you could watch her as she was presenting. She was very intelligent, spoke eloquently, had excellent presentation skills, and was a mother whose children you could see walk around during the session. She seemed like a wonderful mother too. I’m not sure I would do as good as a job as I have public speaking anxiety, which is mild to severe depending on how nervous I am, so that made me appreciate her presentation skills that much more.
So I see her as an accomplished woman period. The fact that she has Down syndrome does make it that more impressive, even though it shouldn’t be in an ideal world, and I know many parents would look at her and see her as what they would hope for their own children with Down syndrome in the best of circumstances. Because of this, I wonder if people think of her as a rare oddity because they think it not possible to have a person with Down syndrome be so like everyone else. I can’t recall if she had mosaic Down syndrome, but I don’t know if that truly matters in the context of this debate. Because saying she is so high functioning (compared to others with Down syndrome I am assuming) does seem insulting to her regardless of mosaicism or not, and I think she took it that way too.
So if she felt insulted (and she handled the remark graciously), then how do others feel when being described this way? So when someone says “your child is so high functioning,” or says “maybe you will be lucky and he or she will be high functioning,” what should you say? I like how another mom blogger put it. She said that you should say that there is no “mild” form of Down syndrome, that you either have it or you don’t. That abilities vary in range just like in the typically developing population. I like this response best.
Even for Luke, he has his strengths and weaknesses. He is not very motor driven and still only crawls to get around, but does that mean he is “lower functioning” than others his age, even if he doesn’t walk until he is older? Or that he doesn’t sign words and infrequently speaks words (which his older brother who is typical was like too, although he started speaking more at 15 months), does that mean he is “lower functioning” than others his age with Down syndrome? Perhaps. But he also eats and drinks from a cup very well, even better than some typical kids his age. He uses his pointer finger well. And he is a good problem solver and can communicate well in other ways.
But who likes to be constantly compared to other people? My parents did that to me a lot when growing up, and I can tell you I hated it! Even if they were complimenting me, I got upset. So I can only imagine how this would upset a parent, child or adult with Down syndrome. I know it’s human nature to do this, and it’s only reinforced by statistics we read or hear at the doctor’s office of when babies or children should be hitting milestones. And for identifying conditions like autism, it is important. But let’s not make it how we live our lives or talk about our children.
Even for adults, what does it mean for someone with Down syndrome to be “high functioning?” Does this mean they have a job, live independently, have friends, and are dating or are married? Isn’t that just being socially integrated? Because aren’t there many people who are typical out there who are not “high functioning” by this definition? Also, what do these “accomplishments” have to do with Down syndrome anyway?
So can we stop with the “high functioning” and talk about abilities instead? I still don’t have a great answer to this one, other than not use the term at all. So maybe we can say that Luke has good fine motor abilities and working on gross motor skills. Or if you meet a child or adult who has Down syndrome that is what you consider “high functioning,” and you want to compliment them, then you can probably say something positive that is specific like “you are so good at walking” or “you are such a great sports fan (music enthusiast, artist, fashion diva, etc.)” all depending on the person and situation. The point is to make the compliment specific to them and what they do (or know) well. Saying “high functioning” just doesn’t cut it, and I think it ends up being a backhanded compliment.
But I won’t bite your head off if you say it, especially if you mean well. I know we have a long road ahead of us for true inclusion, social acceptance and practical sensitivities. So let’s take awareness and acceptance one person and day at a a time.