This little snippet of conversation between Spock and Kirk illustrates Meriah's Blog Hop topic this week: what have people said that has gotten under your skin about something that relates to your connection with disability - and what do you want them to say instead?
I'm not the sort of person to call out a well-meaning person on something they've said that isn't totally appropriate in the special needs community. I mean, how are they supposed to know? They think they're saying something nice, but there's a whole book of more PC jargon out there that they can't have been expected to read. Those of us in the know hear what they say, we feel the nails on the chalkboard, and we should just let it go, which I do. Why alienate someone over that?
That being said, that nails-on-the-chalkboard effect still lingers when someone says "Downs kid," or "Down syndrome children." Want to make me really squirm (another one for my Words I Hate list...) in my seat in discomfort? Use the words high functioning or low functioning in a sentence. No, I won't call you out on it. Actually, you may be surprised that I'll actually be speechless and won't say anything at all. I'll start fidgeting, look down, desperately trying to think of some appropriate way to respond. Usually I'll just change the subject right then and there.
I mean, what the heck do you say to that? Thank you? Not appropriate. I don't think people can be viewed in terms of functionality, especially as children. Do people, not in the SN community, view children who can't speak as low functioning? Apraxia is a real condition that prevents someone from being able to mimic sounds. Doesn't mean they can't function. Or that they aren't smart. It can be overcome. Do people, not in the SN community, view people who don't speak clearly as low functioning? By nature of their physical make-up, they are unable to speak clearly. Nothing to do with their mental abilities. Do people, not in the SN community, view a person as high functioning or low functioning based on their ability to engage them, with their eyes, their smile, their body language? Well, you know what? My kid's a smart cookie, but catch her at a bad time, when any particular set of circumstances happen to come together randomly, and she may be completely shut down. Head down, arms limp at her side, eyes on the floor, tongue out, not talking. Does this mean someone will view her as low functioning?
This term is based on nothing other than a need for people to categorize, to classify, to judge. While the well-meaning person may just be wanting to pay a compliment, I think the better way to go about it would be to say, "Your daughter is so bright!" And yes, they'll get an answer from me then.
"Thank you."
8 comments:
Beautifully written, Becca!
i really dislike when people think my daughter is low functioning just because she can't talk. my daughter is very bright but shes got autism and apraxia so it makes it harder for her. another one i dislike is the whole she looks so normal. thats because she is normal lol.
this is a loaded topic for sure, and i struggle myself with how to handle a (for me) nails-on-the-chalkboard situation when matched with good intention. last week at a support group for parents of kids with DS (in switzerland), one of the mothers and active advocates in the group repeatedly used the word "downy" in describing a conversation she had about seeing another child with down syndrome. i had honestly never heard this term used before and i took the opportunity to open up the subject based on questioning if this is a common term used in the german language, also saying that it feels uncomfortable for me to hear it. many others expressed that they didn't feel comfortable with it either, as with with "downs"- and they also couldn't really say why. a couple other people said that they found "downy" to be an affectionate term and not at all denigrative... so opinions definitely vary.
i have also often heard parents in this group refer to their children without DS as the "healthy" and "normal" ones, which i find very dangerous and misleading.
i was shocked to hear that two of the women in our small group last week were informed of their child's DS diagnosis by doctors telling them their child had mongolism.... and i remembered myself that a VERY well-intended neighbor of mine said to me when i saw her after livia's birth: "one of my good friends also has a mongoloid child!" it must have been a stable hormonal moment for me, because i said." oh, you mean down syndrome? ...that term is not used anymore."
thx for sharing your thoughts about "low/high functioning".
Hmmmm....
Being a step mom I guess I'm not as attached and bugged to how my daughter is described. It wasn't until I read somewhere that calling a child a "downs child" or something like that is derogatory. Soooo I decided to get out of that habit. BUT I am not really offended when I hear those terms.
Just last week her dentist referred to "downs kids" a few different times in our conversation. I recognized his detachment from the disability and that's it.
I don't know, maybe this will change one day. I see it as a way to classify our kids. As to the terms "low functioning/high functioning" I had no idea some would see those terms as demeaning. I suppose I'll have to rethink that.
BTW, thanks for commenting on my blog. I really appreciated what you said and posted a reply.
Thanks for commenting on my blog, Becca!
I love your blog.Samantha is so beautiful! I can't wait until Arlynn is her age. :)
So flipping true and well said.
There really is a lot of PCness in the special needs community. And even now, when I am very conscious of it, I still feel like I say the wrong things at times. I am very forgiving with strangers who you can tell have good intentions. Not as much with family that have been corrected repeatedly....
The "high" functioning and "low" functioning thing has always bothered me...It's simply not a fair thing to say when describing people with Ds. Either you have Ds or you do not...And it affects each person with it differently. They have different strengths and different weaknesses, that does not mean one is smarter or higher functioning than the other.
I had a relative come visit not to long ago...After seeing Russell they said to me he must not have "full blown Ds" He must only have it a little bit cause he seemed so smart...LOL...I find I must correct people...But at the same time, I need to be able to laugh things off and not be offended.
Great post Becca :)
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