Tuesday, October 27, 2009

Non-offensive Language 101

It's always a good time for a few tips and reminders about offensive and non-offensive language (and attitudes!) concerning people with disabilities. 'Cuz, if you wanna be my friend, ya gotta know the lingo!

~~ "Retarded" and "retard" are just plain unkind, and really makes the person using such terms appear low-class and intolerant. Especially when used in the slang, casual form, as in "That's so retarded!" or "What a retard!" If overheard by a person with Ds or a family member of a person with Ds, be warned that it will very likely induce them to open a can o' whoop ass on you and endanger your life. Technically and clinically? Yeah, they tell me that my son is mentally retarded. I prefer to think of it as a learning disability. IQ measures one's ability to learn; it does not measure their worth as a person or their right to respect and dignity.

~~ My son is not "Downs," he is not "Down syndrome," and he is not "a Downs baby" or a "Down syndrome baby." Finn has Down syndrome. Down syndrome is not his primary identifying characteristic, and it is but one element of his genetic makeup.

~~ By the same token, Finn is not a "special needs child." Honestly, the more time goes on, the less hip I am to the term "special needs." I have six kids; five of them are supposedly "typical," and yet they all have their own quirks, idiosyncracies, and yes, special, unique needs. So. I guess "special needs" is a safe catch-all phrase, which is definitely more benign than "disabled," "handicapped," etc. However, if one is going to use the term "special needs," Person-First language still applies, as in "child with special needs" as opposed to "special needs child" (hopefully Katherine Heigl and her hubby will catch onto this before too long!).

~~ I'm really not a fan of the whole "special" thing anyway. I mean, all my kids are special in their own ways (and they all drive me batty in their own ways . . . but that's for my other blog). Finn is a baby who has a wonky chromosomal makeup. He's not any more or less a blessing to our family than any of our other kids, he's not other-wordly, and I can assure you that he does not have wings or a halo. At least none that I've seen. But maybe as an atheist, I wouldn't be able to see them?

~~ There is no such thing as "mild" Down syndrome! Down syndrome is the condition in which the twenty-first chromosome is triplicated in every cell of the body. So, just like it's impossible to be just a little bit pregnant, Down syndrome is all or nothing (unless you're talking about mosaic Down syndrome, but I'm not; I'm talking about Trisomy-21, the most common form of Down syndrome, and the form which Finn has). There is also no correlation whatsoever between the "mildness" or "severity" of the facial characteristics of a person with Ds, for instance, and their cognitive and/or developmental abilities. There are varying degrees of "functionality" of people with Down syndrome, and their abilities are impossible to predict in babyhood; only time will tell. The fact is, however, that most people with Down syndrome are able to function at much higher levels than most people realize.

~~ My son is not "afflicted with Down syndrome," nor does he "suffer from Down syndrome." Down syndrome is not a sickness or a disease, and I suspect that the most suffering he (or our family) will do relating to his having Down syndrome will be as a direct result of the ignorance and intolerance and unkindness of others towards people with disabilities. Yes, Down syndrome is often associated with various health issues, but not always. Finn is healthy, he's happy, and he's very much loved. His life is not a tragedy, nor is our life with him in it.

So take heed, people! Thanks!


Chrystal said...

Here, here!

You've done it again, my friend. Thanks!

jonas said...

this. is. awesome.

j&j king said...

I also dislike the term "special needs". We all have them. I prefer "specific needs". We all have those too, but it doesn't seem to have as much of a stigma. I also really dislike "disability". I wish there were a better alternative. We all have our differences and "disability" is an arbitrary category assigned by our current society. In other cultures, at other times, these "disabilities" may be thought of as gifted and unique in a positive way. It is only our society which turns these unique characteristics bad. I realized pretty early on in my son's life that if we lived alone on a desert island, there would be nothing wrong with him, and the world (OTs. , PTs, Drs, etc) would not be constantly trying to fix him.

Thanks for another great post Lisa.


Esther and Brian said...

You have wonderful points, Lisa. I do not have children that were born with DS, but I understand what you are saying. I, too, hate and notice when nurses and medical professionals (even them!) refer to babies are "Downs babies". I agree that people-first language is much much better and appropriate. I have a friend who is pregnant with her second child and one of her testings indicated that possibly/maybe the baby has Down's Syndrome. When she was telling me this, she was saying "Down's baby", too- but I corrected her!!!!

I do have one question, though, and pardon my lack of knowledge/ignorance, please. I understand that there is no such thing as "mild Down's Syndrome"--but why is it that some children with DS have more pronounced facial characteristics than others? Is that simply the same thing as I have a bigger nose than somebody else or I have a smaller frame than other women, etc? Because visually speaking, I would have to say that I can not tell that Finn was born with DS that easily/fast/clearly...you know what I mean? If I saw him at Starbucks with you, not sure if I would notice...I would notice his gorgeous blue eyes, though!

Esther (been following the blog for quite some time now..our sons are just 1.5 months apart)

Tara said...

Can I steal this? If I quote you, I mean. I would really like to put this on my blog without the words having to come from my own lips. I'm such a weenie! :)

Btw, had Eon's hearing tested yesterday. Before the audiologist looked at the pw, she asked why we were there. I told her we wanted a baseline screen because he has Ds and she replied, "He does? Must have a mild case of it." Sigh.

Lisa said...

Tara, I'd be honored if you quoted me :)

Esther, thanks for the comment! You pose a good question: "why is it that some children with DS have more pronounced facial characteristics than others?" The only answer I have for you is that, like so many other things, it's a crapshoot. That pesky extra chromosome affects each individual who has Ds differently. Some have very pronounced "classic" Ds facial features, some don't. Some have a single crease across each palm, some have it on only one hand, and others on neither hand. Some people with Ds have heart defects; some do not. I don't know why. As far as facial characteristics, though, the person with Ds still also inherited characteristics from his/her mother and father and will also look like them. Finn actually looks a great deal like my oldest son, Kevin, looked as a tyke. But it's interesting to me that you say that you wouldn't notice that Finn has Ds by his facial features, because in all honesty, I see it more clearly the older he gets, and so I assume that it must be clear to everyone else too.

ds.mama said...

Very very well put.

Kristin said...

A great post!

Cate said...

I'm stealing this. Well, linking it anyway. Absolutely perfect!

My name is Sarah said...

This is Joyce. Great, great post Lisa.

Susan Carson said...

Hi Lisa-

I stole from you-- I mean linked to you-- too. Thanks for your awesome-ness!


sheree said...

I feel like an idiot. Here I am- a mother of a CHILD with Down syndrome and *I* have been offensive to other mothers in the same boat. I probanly use the term "special needs" at least once a day.

Thanks for the wake-up. I had no idea.

Monica Crumley said...

You said it all. Great job for putting into everyday language. I agree with you on the special needs thing, too. All my kids have special needs. Orthotics, braces, a bunny to sleep with, a tree to climb... :-)

Jennifer said...

Yes infinity!

The attendant while I was pumping gas at Costco said that these kids (my Ellie) fight so hard for everything in life. It was hard not to run her over (just a little) when we left.

I think we've all written something similar, but I'm still linking so that maybe my mom will stop telling me Ellie is so sweet (which she is), but in THAT tone.

jmor25 said...

Your heartwarming post re kids who have DS and other disabilities, and the terms used to refer to them, defining a child by all that he is, not just his diagnosis,avoiding offensiveness,the misuse of "special" as an adjective,--your entire content about the subject and Finn-- all seems innovative, and possibly never before described in this way anywhere any place, a new way to view things. Above all , it tells us about your unconditional love.


Racheal said...

I just started reading your blog. I read the Non-offensive language 101. I am a special education teacher. I am so happy you posted this. I cannot stress it enough to use people first language. I absolutely hate the word "retard or even disabled". I just wish more people would use People first Language.