Friday, May 06, 2005

On Your Vocabulary

Hi. When I'm in the room, please try to use people first vocabulary, for example "child with Down syndrome" instead of "Down's baby."

Also, please try very very hard to avoid telling me about "these kids" and what they're like. For example, do not tell me how much you love "these kids" because they're so sweet and cuddly and wait for me to respond like you just said something nice. You didn't. Just for fun, toss the name of another marginalized group in there, like a racial minority for example, and read the sentence again. Offensive, right?

Get this. My child is unique. Being a girl doesn't mean that she'll love to cook. Being white doesn't mean anything about her athletic abilities. And having Down syndrome doesn't mean that she'll be just exactly like every other child with Down syndrome. We like to think that the non-duplicated vast majority of her genes (all of which come from her father and me, by the way) have something to do with who she is too, and that's not to mention the parts of her personality that will develop because of the experience she has and the way she's being raised.

Now go tell all of your friends. Thank you.


Sarahlynn said...

I'm responding to my own post! Do I get a narcisism award?

I just want to make it clear that this post isn't intended as an attack on any of you. I hear "these kids" comments all the time and this is what I'd like to start saying back.

But at least people are trying to be nice.

none said...


I admit that when I read this, I frantically searched my memory for any think I might have said.

But yes, now that you mention it, I have similar troubles:

"Children with Aspergers should act (insert cliche of choice) but your son is acting (insert uniqueness inherent in all humans)."

Hello?! Everybody is unique - no exceptions! Not all autistics flap their hands, no matter what you´ve read on Newsweek!

she falters to rise said...

"these kids", "these people", "these individuals"

yuck, gag, yuck, gag

"these words" make me sad and sick also.

Yankee T said...

Adopted kids, same's tiresome and annoying, and really burns me when they are old enough to understand...which is actually very young!

trisha said...


Yes, yes, yes!


I, too, am effing sick of hearing about Spectrum Kids, and how autistics hate loud noises, and "what's wrong with him?" and oh, I am sure he'll wake up one day and just start talking, and, my personal un-favorite, "Be careful what you wish for...when he starts talking he'll never stop." Wtf?

I am linking to this.

Carmi said...

Perfectly said. I used to coach Special Olympics at my pool, and I cringed every time someone from an earlier or later program sauntered onto the deck and searched his/her memory banks for something intelligent to say. What always came out was inevitably condescending and cruel.

We live in a world that rewards sameness to such an extreme degree that most people have no idea how to respond when they encounter anyone who is remotely different.

You have a great blog.

E said...

Brava! Well said.

PPB said...

You go!!
(And I'm trying to figure out why the comment I posted yesterday isn't there. ....I think there are comment monsters on your blog)

Redhead Editor said...

Like Ciarä, I am searching my memory for that day I met you and Ellie at the train station while waiting for Kerry and hope I didn't say anything offensive. Thanks for the reminders. It helps to know, really!

Dreaming again said...

I have been reading your blog for a few days now. I really like it.

Just wanted to wish you a happy mother's day from another mom of a precious kiddo. One who's refused to fit into any label, or stereotype or act like anyone has ever expected.

I wrote this poem about him in January 2000

A Mother's Heart
by Peggikaye Eagler

Every mother had Dreams,
Of a Child perfect and whole.
Every mother has Hopes,
For perfection, body and soul.

They told me you’re not perfect,
Sweet loving child of mine.
They told me that your learning,
Is taking too much time.

They tell me that your tests came back,
Showing problems and low scores.
They tell me that you have to struggle,
This hurts me to the core.

Every mother has dreams,
They tell me you don’t fit.
Every mother has hopes,
They say perfection you won’t hit.

But they don’t see what I see,
The smile that lights your face.
But they don’t hear what I hear,
Your laughter reveals God’s grace.

They don’t see what I see,
My child loving and whole.
I have hopes and dreams,
Because my child you are a gift from God
And you have a PERFECT SOUL.

© Peggikaye Eagler

Sarahlynn said...

Thank youm Trisha, Carmi, and E.

PPB, yes, I am convinced that there are comment monsters here. But like the monsters under the bed (particularly the arachnid variety) I refuse the acknowledge them in hopes that they aren't real.

Ellen, no worries! I don't remember anything at all unpleasant. That was a lovely afternoon and I was so happy to see you at the train station.

Thank you, Dreaming Again! That is a wonderful, wonderful poem. You should post it at Postcards from Holland: !

trisha said...

Happy Mother's Day, SL!

Dreaming again said...

I went and looked at the Postcards from Holland site, but wasn't sure how to post it on there.

How do you sign up to post it?

Sarahlynn said...

Dreaming again,

Moreena started the blog and she can add you as a contributor. Just shoot her an email at

She's out of town right now and so it might take her a little while to get back to you. :)


Anonymous said...

"These people" are nuts...

Rachel said...

What a fabulous post!

Charlotte Poetschner said...

When I was nine, with all the outrage of a girl's passionate conviction, I told my mother, "I AM NOT a diabetic! I am a person. I happen to have diabetes."

My mom recently reminded me of these words. She has never forgotten them and thought I had made a powerful point. Her daughter was more than a disease diagnosis.

But I've changed. I now have a much more obvious disability. I am a blind person.

Oh, yes, I confess. After 25 years of total blindness, I no longer sweat what to me seems the smaller matter. That, and it is a bit weird to say "I have blindness." Oh, I know. I'm supposed to say "visual impairment". I'm supposed to say that I have a visual impairment.

When I choose to share on line that I have a disability, I tend to put it bluntly. I am blind. Totaly.

Why the change in my language usage? Please, please, please understand that I am only describing my story. I will with great care observe the vocabulary rules on SarahLynn's blog should she be kind enough to continue to extend the privilege.

But, why the change? At least for me, I came to understand that in a weird way my exclusion of my disease and disability from the adjectival position was kind of discriminating. The tall girl isn't just tallness, but we'd never say "She has tallness" out of worry that her wholeness as a human being might be threatened. The blond girl isn't just blondness (although there are jokes enough out there that might defeat my point).

My life story includes blindness and diabetes in some ways that I hate, but also in ways that are rich and meaningful. So...unless we are saying that all these conditions are somehow taboo, inferior, and less-than-normal, how come I can't put "blind" or "diabetic" in as an adjective, just like I can using words like tall, blond, smart, beautiful, wise, funny, generous, kind, plain-spoken, or lovable?

It's when a word no longer carries in it something that stirs pity, fear, or revulsion that it won't matter where it lands in the sentence.

Sarahlynn said...

Charlotte, thank you for sharing your story! I appreciate hearing your experience and perspective.

And I absolutely agree that the real insult (or not) is carried in the intent behind the words. And I am in full agreement that everyone/every community should have the right to self-define.

I do think that being reminded that a person is more than her diagnosis can be helpful in many cases to raise awareness of the prejudices lurking behind seemingly innocuous words.

I am glad that it's somewhat less common for physicians to refer to "the terminal cancer in Room 442" than it used to be, and think that's a little different than talking about "the tall girl," in more ways than just that being tall is considered less of a pejorative than being terminal.

I also think that the visually impaired and hearing impaired have done a lot toward raising awareness of and removing stigma from the terms blind and deaf. And I think that's great.

I think that people still need reminding that not all people with Down syndrome are a monolithic group that X, Y, and Z. I think this is partially because so many seem to think of people with developmental disabilities as being significantly less than other humans in significant ways.

My insistence on respectful and people-first language here absolutely does not preclude an individual's right to self-define herself and her conditions.

But it is also a little selfish. I don't like when people talk about "Down's babies" like they're this other, this consistent group sharing a common set of characteristics different from the rest of us.

My daughter is my daughter, first and foremost. She is a person, member of my family, someone I love very much. She has Down syndrome, and she does share challenges with others who have the same diagnosis. But they don't define or limit who she is, and I want to increase awareness of that.

Charlotte Poetschner said...


I have occasionally been accused of idealism. I guess I'm just hoping for the day when the words won't cloak anything that cuts or bruises. Trust me on this one. "Blind" still carries plenty of slings and arrows that zing me at the very moments when I think people are finally getting beyond that one aspect of my life.

"Don't all blind people kind of get a compensation? You know, all their other senses get sharpened, don't they?"

Yeah, and I make music like Ray Charles, too.

"How could she hold this position at our church? She'd be out here alone a great deal. Wouldn't somebody have to stay with her?"

I am, btw, a Presbyterian minister. The above question does still get asked, although not usually directly. I guess they think I have a "keeper" at home...

"Would she like straight-legged jeans or bellbottoms?"

"Does she need another appointment with Dr. So-&-So?"

The above questions and its like always happen when I'm standing there right in front of the sales clerk, medical receptionist, bank teller, etc. It's as though I'm not the one with the vision problem.

"...and everybody is equal now, you know. We have the ADA. You people get all the breaks you need, just like everybody else."

Sure. That's why the 70% (and growing now) unemployment of those in the community of the disabled and the hugely disproportionate poverty level is really the fault of the person with the disability. We're all lazy bums and freeloaders...and, yes, out and about on the internet that's the way many people think.

Sorry, SarahLynn, I'm surprising myself with my emotions this morning. I really wanted to tell you

1. I really, really, really love your blog.

2. My old computer wouldn't let me write to a blog or post comments. (Maybe that was a good thing?) My very first comment to a blog was the one above.

3. I'm playing with this blog thing now, trying to figure it out, and your blog sets a great standard!

I hope Elly and Ada, you and your husband, have a glorious day today!


Sarahlynn said...

Charlotte, I am flattered and appreciative.

Also, ah, idealism. I swing erratically between that an unpleasant negativism. I call it "preparing for the worst so as to be pleasantly surprised if it works out otherwise." It drives those close to me crazy.

It's funny that you mention the "other senses sharpened" thing. I was just reading a book yesterday where that happened - immediately! - to a woman who (temporarily) lost her sight. It frustrates me that this whole thing is still be perpetuated. (And the novel was written by a physician!)

Parts of your post are hard to respond to, as they hit very close to home and make me emotional, too. Specifically the ways in which the world is still very unfair for people with disabilities, and the treating as less-than-fully-human of people who are deemed other.

Still, this made me chuckle: "It's as though I'm not the one with the vision problem."

So glad you found me!