Thursday, August 11, 2011

The R Word

When I started this blog a few months ago, the intention was to educate and spread awareness of Down syndrome.  I believe I have done that, in my own way.  I have tried to connect to a variety of sources and tap into a few things as I have gone along.  It has helped educate me and helped me become a better advocate for my son.  It's a pretty heavy topic... I have a pretty heavy life;  I try and keep things positive and uplifting for a reason.

That is probably why I am torn about writing this next entry.  I was tempted to fire it off half cocked and then I was tempted to ignore it. The concept and conflict have been rattling around in my head for a while. It's a highly political argument, one that is so charged with negative energy I hesitate to discuss it here. 

When that neonatologist shuffled over to me in the OR and told me that my son had Down syndrome, my world was changed.  Forever.  In an instant.  I learned over the next few weeks who my friends and family were and who I could count on in a pinch.  There are an awful lot of you and I have a great support system, both real and virtual.  I also learned that there were certain words that I used in jest that I wasn't going to be using any more.

My decision to stop using one word in particular is not going to be a surprise to any of you, neither is the word itself.  The R word.  The R bomb....

The word is "retarded".

I grew up in the 70's and 80's... a handful of years after they stopped institutionalizing mentally challenged people as a matter of course.  It was a totally different time.  If your IQ was in a specific range you were described as "retarded" by the medical community (meaning "slowed")  In common parlance, if something was stupid, it was "gay";  if it was really stupid, it was "retarded".  These were not meant as words to hurt either group, although a lot of that did go on and was socially condoned.  Those classified as "retarded" medically were often teased and bullied mercilessly.  The most common word was "re-tard" (as in "look at the ____ " and "you are such a ____").  If you had a differently abled child, you were pitied... from afar as you certainly kept your 'shame' within your own walls.

Flash forward to the middle 90's when "PC" or political correctness is all the rage.  We stop using "retarded" and start using "mentally handicapped" which quickly morphed into "mentally challenged".  "Retarded" was out, especially at work.  (A direct quote from a nursing prof.)  It all sounds so barbaric now, but those were the times.  We still used the word to describe foolish or stupid.  As time went on, it entered into popular vernacular to describe intoxication.

It's now 2011 and earlier this year the "Spread the Word to End the Word" was begun.  I've included the PSA here for those who have not seen it.

It's a "fair enough" PSA.  It gets the point across.

My conscious usage of the word ended the day I came home from the cardiologist in January.  Unfortunately, my unconscious usage of the word still surfaces once in a while.  I self correct... usually making a joke (as in "it's our word... we're taking it back!" or something similar).  It still happens once in a blue moon.  Like accidentally calling the three seater in the living room a "Chesterfield" or accidentally referring to my MP3 player as a "Walkman", the word bubbles up like many others of my youth.  It is not meant to hurt or demean anyone, most of all my son.  But, it's there.  It happens.  It happens less and less as time goes on, but it happens.

It happens to my friends too.  I went to dinner with a few friends last night and one of them busted out with it early in the evening.  She was frustrated and describing something ridiculous and out it came.  I chose not to jump down her throat, I chose not to point and yell and make her feel awful as some advocates would have me do.  I chose instead to wait until later in this conversation when we were discussing a question I had posted online earlier on.  When I mentioned it to her, casually, she did what I thought she would do:  she was mortally embarrassed and wanted to crawl under the table.  Her face said it all.  I didn't have to bitch slap her, I didn't have to do anything. My gentle friend was mortified and hurt and so very upset that she might have hurt my son or myself.  I brushed it off, but she will be more aware next time.  As will the rest of us.  As will the eavesdropping folks at the next table.  She did not mean anything by it; she simply slipped into the dialect of her youth, much like her delightful southern accent gets a little thicker when she gets worked up.

There are some advocates that would be quick to point out that by brushing my friend off, by minimizing her usage of the word, I was allowing it to happen.  I was creating safe harbour for the word and that makes me no better than bullies who use the word to hurt.  I couldn't disagree more.  Much like other words that have been stricken from the lexicon, you have to take away their power first.  Other groups have successfully used this technique in the past and have actually "reclaimed" words. In some of my women's groups, we use language to describe each other that traditionally has been used by men to hurt and demean.  By using words like "twat" and "bitch" and "hooker" and the almighty "c☠nt", we take away their power.  They become commonplace and in some cases, terms of endearment.  It also serves to create a barrier between us and the intended hurtful use of the word when it does occur.  It helps soften the blow.  I'm not suggesting that we encourage the use of the word "retarded" here, make no mistake.  I am suggesting that the best way to inflate it, to make it bigger and meaner than it already is and give it as much power as possible is to verbally and socially tar and feather anyone who uses it.

Change takes time.  Even in the first decade of this century it was not acceptable to use the R word in polite company.  PC was in a full rolling boil and if you used any word that could remotely be construed as being offensive to someone, there was somebody else ready to point a finger and make you feel like shit for saying it.  Somewhere around 2003 or 2004 I was working one night and had difficulty expressing myself in a key bit of charting, so I sought the aid of my colleagues.  I was reading out loud a part where I described a patient as having "psychomotor retardation" (a slowing of thought and movement) and an RPN that was working there (who was undoubtedly an idiot) hissed at me:  "You can't call them that!"  I looked up puzzled and was told "You can't call them that!  You can't call them re-tards any more!"  Ummm, what?  Even then, something that was well meaning initially, could be taken to extremes and used incorrectly by the ill-informed.

With my networking, blogging and various writing projects, I have entered into the Down syndrome community.  I have met some very nice people, some of which blog themselves.  Almost everyone I know is involved with the "Spread the Word..." campaign and the watchdog group that it has become.  The group has good intentions and you can pledge to stop using the R-word on the website.  Currently, what has this group and the rest of the DS community buzzing is a new film by Universal Pictures.  I'm not going to give the title here, but suffice to say that it is yet another rehashing of the body-switching theme from a tired Hollywood.  To be fair, I have not seen this movie, I don't have a copy of the script and the people at The R Word: Spread the Word to End the Word have not seen it either.  There are a few bloggers in the DS community who have seen it and I am quoting them third hand.  The movie itself is rated R for crude humour and language.  What has everyone in an uproar is a particular piece of dialogue;  one character comments on his friend's twins and asks "Why aren’t they talking – what are they retarded?” and then continues by saying "And this one, he looks Downsy."

Yeah, that's pretty harsh.  I have twins.  One more than "looks" a little "Downsy" too.  I probably will never watch this movie.  In all fairness, I don't have time to see a lot of movies (I can't remember the last time I was actually in a theater or what I saw) and I certainly can't afford it these days with the price of tickets.  I pick off movies on TMN occasionally and that little bit of dialogue pretty much guaranteed I won't be watching this one (as a personal choice). It was a bad call to keep that bit of dialogue in in my opinion, but by looking at the ratings, there seems to be a lot of bad calls regarding the dialogue and the movie in general, frankly.  It is tanking at the box office.  Hard.

Naturally, there is a call to boycott the movie, which in my experience doesn't do anything except encourage more people to go see the damn thing so they can see what all the fuss is about.  Quite a few of my movie watching dollars have been spent in just such a manner over the years in the pretense of "making up my own mind".  I'm not going to tell you what to do as that isn't my place.  Since I do not want to be associated with this particular movie, I choose not to include the title here.  What has me a little concerned is the next step from the watchdogs:  the call to write/fax/email/telephone anyone and everyone associated with the movie. I will agree that a carefully yet strongly worded letter or two has come from me over the years to various sources.  However, I have not engaged in "hate mail" which I am sure the producers, directors, writers, distributors and actors are currently swamped in after their public contact information was posted after the article for everyone's convenience.  What seems to elude most well meaning folks is that you are going up against an industry where any press is good press.  Even a retracting statement from a publicist or a "public apology" is still an advertisement for the movie.  Which makes more people go see it.  Which perpetuates the problem.

Even me mentioning it without mentioning it perpetuates the problem.

Instead of grabbing my pitchfork and joining the mob with this or any other blatant asshattery (which is what this really is...) I choose to make my stand elsewhere.  As an advocate it is my job to educate and spread awareness.  I have done that and will continue to do so.  I ask those around me to open their minds.  That is all.

Let the movie die a horrible, well deserved death.  It is going to do that, derogatory jokes or not.  Even twats like these guys really don't deserve an intervention.  These people do, along with possible criminal charges... However, the vast majority of people who let one slip are well meaning and good people.  In time, this will just be a memory.

In the course of this blog, you are following along with Wyatt as he grows and develops like other kids in some areas and not in others.  I will continue to chronicle as time and life allows.  My goal ultimately as a mother, as an advocate, as a blogger, is to educate those around me about DS through Wyatt.  Not in a demanding, foot stomping way, but in a way that promotes awareness through familiarity.  I want the fear and the apprehension of the unknown abolished.  I want you to be able to see him as I see him.  I want you to be able to look into his eyes as I do and see the beautiful soul that is there.  That is my challenge, to be able to put into words the honesty, the purity and the joy that is Wyatt.  It is still too early to see what obstacles he will face in his life, but I hope through me he will not have to face discrimination.  If and when he does however, he will be surrounded by those that love him for who he is, not what he is.

His name is Wyatt.  He is my son.  He has Trisomy 21, more commonly known as Down syndrome.  Sticks and stones will not break his bones and this word, this R word, will never hurt him.  It is my responsibility to change the world around him.  Not by might, not by force, but by love.  It isn't the easiest way to go about it, but it is the most permanent... and the results are beautiful.

"Water is fluid, soft, and yielding. But water will wear away rock, which is rigid and cannot yield. As a rule, whatever is fluid, soft, and yielding will overcome whatever is rigid and hard. This is another paradox: what is soft is strong."~ Lao-Tzu (600 B.C.) ~


  1. I love this campaign. I love the opportunity to educate folk about the r-word and our children. I have had very interesting conversations with people when I am wearing the shirt I bought off the web site.

    We need a new r-word. Respect.

    Be gentle.

  2. Hi,
    I was moved by your post and the movement in this area. I agree that the default choice of words is less than acceptable. As a member of the online gaming community the r, g, and f words are thrown around without care for anything that they don't like or feel is different than the normal. Rather than hate on other communities, my friends and I came up with a new work that people can use without offending anyone.

    The word is "Flampy". It means when something isn't normal and unexpected that throws you off. It can be used without offending anyone and this word should be used and spread. I've found that anyone we expose this word to really likes it and just stops using the other words. It's like something was missing in the vocabulary and this fills the gaps. I hope that this suits you and helps in your cause. :)

    Have a wonderful day and good luck!


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