I feel a little sheepish hiding behind the safety of my blog. If it bothered me, I should have corrected your language at the time. But I didn’t want to be a party pooper. We were having such a positive appointment.
You were explaining why Kyle might not need to wear orthotics in his shoes anymore. At odds with what physical therapists recommend, which is that kids with low muscle tone need extra support for stability, you informed me that if Kyle’s feet are not in pain and his functioning is not affected, then he doesn’t need shoe supports.
Then you said, “Down’s patients, because of their loose joints and low muscle tone…”
I don’t know how that sentence ended because I was distracted by the sting of its beginning. I nodded in understanding as you finished talking. We shook hands, said polite goodbyes, and you left the room none the wiser.
Driving in the car on the way home, I thought about why the phrase Downs patients would upset me so. Kyle is a patient, and he has Down syndrome. So it’s just a description, right?
Ever heard of People First Language?
In my thought process, I tried to decide if the phrase really, truly bothered me, or if I was just conditioned to be offended because I have been trained to use People First Language since my days in teacher college. We don’t call a student a “learning disabled student,” we call him a student with a learning disability, and so on.
Decidedly, there is more to it. The reason Kyle is not a “Downs patient” is the same reason my psychologist should not refer to me as an “ADHD patient.” Referring to the person by their diagnosis LIMITS the person to stereotypes and generalizations.
In this case, the orthopedic doctor made a broad generalization about kids with Down syndrome and their tendency to have low muscle tone and loose joints. The problem is that this trait, along with all of the other traits of Down syndrome, vary as much as the people who have them. In using Kyle’s diagnosis as a descriptor, the doctor effectively erased Kyle’s individuality as he lumped him into one category. And this doctor is not the first professional we’ve encountered who used this language.
Why is this a problem?
Physical traits are one thing. We know that people with Down syndrome have some similar physical traits, but all are manifested differently. People with Down syndrome, like all people, also have differences in ability, intelligence, and behavior. Traditionally, those three items in particular have not been represented positively in people with Down syndrome. Lumped in with them are the often negative stereotypes and generalizations.
When you refer to my son as a “Downs kid,” you limit him.
While we waited for you to arrive in the exam room, I read a book to Kyle, then he asked me to read it again. I came to a page with simple words, pointed to them, and Kyle read each as I pointed: “Then they all went to…”
Right then you walked in with your assistant and resident. You asked how things are going, and I proudly exclaimed that Kyle just read those words by himself. The three of you smiled and politely said, “wow, that’s great!” in that patronizing way that people say things when they don’t believe you.
Did you think it was impossible for Kyle to be learning to read at the same time as his peers? Is it because you see him as a “Downs patient?” Please don’t limit my child. He is Kyle, he is my little boy, he is not my “Downs child.” His life is not scripted by the preconceived notions of you or any other person. Put Kyle before his diagnosis and he will know that he is not defined by it.