Awareness Starts With You …

So often we, as special needs parents, tell ourselves that we already do so much every day, it’s just too much to add one more thing to the fire, one more thing to the already growing list of things that just never seem to get done. I just added something else to my plate, though, and I wanted to tell you about it.

Over the last couple of days, I became aware of an emotional movement. It is the Stop the Word to End the Word campaign, and I think it’s worth the few minutes to check out and pledge support. Not because it’s banning a word from popular use, or censoring, but because it is raising awareness about something that is important to many people I care about.

I first became aware of it because of the post on a friend’s Facebook page:

The post that started it all ...

Friend Gina's Facebook post

Which then led me to click on the Jeff Goins link Gina included in her post, finding a well-thought-out and moving post on the same. From his blog, I was able to read comments and saw the effect of differing viewpoints on public discussion. The interesting part of this equation? As far as I know, Goins is a writer, not a parent, sibling, or otherwise personally affected person. Just an interested and caring enough person who was moved to pledge to stop using the r-word.

From his blog:

Do yourself and the world a favor and stop using the word “retard.”


No questions. No excuses. Just stop.

Stop calling your friends “retards” or saying that your parents are “retarded” for being old, senile idiots (you probably shouldn’t call them “old senile idiots” either, but that’s another issue).

It isn’t surprising that a writer would write about something that is important, what is surprising is that more people aren’t.

Why is that?

Looking around the web, I learned that this isn’t a brand new movement – it’s been around for at least a few years. Why haven’t more people heard about it? I wonder if it isn’t for the same reason others don’t think about the words that they say and write.

Folks didn’t stop long enough, pause for a moment, think it important enough to pass along. Just like other folks repeatedly use derogatory words because they think they are words they “love” (I need to capture that actual post, don’t I? … here is a screenshot).

Well, it’s about time you learned something about me. Meet a few very important little men in my life:

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Bobby, Andy, and Logan are my guys. They, along with my husband Jim, all have a rare disorder called Rieger Syndrome. They all won that amazing embryonic lottery, and they all share additional diagnosis’, including Autism, Epilepsy, Visual Impairment, Cerebral Palsy, and more. The short list means we have our hands and our hearts full in this house. The long list means that we encounter ignorance often.

I won’t share all the stories, because there are many. But just know that I stopped being embarrassed and started being the outspoken mom a long time ago. One of the first ‘experiences’ for our family happened during a very rare family outing to a local restaurant when the oldest two were very young. If you have been out with a very young autistic child, you know the sorts of noises, the kind of mess, the unwanted attention, that they attract.

Imagine our embarrassment when, not another patron, but the server actually commented on the mess my son was happily keeping to a minimum and the noises that were actually not all that loud (at the time). With our second little guy just big enough for a booster, and big brother making eyes turn to us, the server’s attitude and comments completely ruined our meal and sent us home quickly.

Before we left, I spoke with a manager of that fine establishment, and with an attitude all his own he told me that he couldn’t control what every person that worked for him said. Really?

I was satisfied only a few years later when the place shut down.

The point is this: at the time I was timid and embarrassed, not angry. I spoke to the manager because his server led to a bad customer experience, not because they embarrassed us and demeaned our child

These days, I have spoken to fellow students (multiple times in many different classes) when they’ve simply used the r-word in jesting or made fun of someone who was ‘slow,’ I’ve plainly and easily spoken back in the store, in restaurants, in schools, wherever unknowing people used words or actions to degrade my children and/or our family. With three special needs children, I’ve had many opportunities to put on that advocate hat – and I do it without embarrassment. After all, why should I be embarrassed because someone else is ignorant?

Interestingly enough, I have had more people apologize than ever strike back (verbally or otherwise).

I stood up.

I spoke out.

I made a difference, however small.

And you can too.

Take the pledge, make the decision to start thinking before you speak or write. And don’t stop with one word. Start with your heart and attitude and decide that you want to be that person – the one people respect because they stand for something tangible and have enough strength to do so openly, honestly, and without rancor.

Just today I’ve taken one step – I spoke about this publicly. Not to one person at a time, but hopefully to anyone who wanders through and manages to read this post. I write, I speak, and I advocate often. Rarely have I used my voice to share the hard truth.

And the hard truth? Is that it is hurtful. It is embarrassing. Just because I have had practice and find it easier to speak up doesn’t mean it hurts any less. Casual conversation becomes a lesson in diplomacy when I have to speak up.

I once had to explain to one of my children what the r-word meant, and why the lady wasn’t really angry at them or even, really, all that angry, and she didn’t mean to call them a name that isn’t allowed in our own home – it broke my heart.

Put yourself in my shoes.

Or, better yet, stay in your own and think.

Would you want to deal with the hurtful effect of someone else’s ignorance? Would you want your children to?

Take the step today. Don’t pay attention to whether this is a special “Day” or “Week” or “Month” – make the decision for yourself, go and pledge to stop saying the r-word. And in the process, consider all the words you use. They really do matter. And they really can hurt.

In thanks and with great respect,


Just one mom among many and one voice among thousands



Filed under R-word, Special Needs

5 responses to “Awareness Starts With You …

  1. Love this. Thanks for speaking up!

  2. Pingback: Stop Using the Word Retard | Goins, Writer

  3. Hi Kat,
    Thanks for stopping by my blog and introducing me to yours! This post is so thought provoking. I posted links to the R-Word campaign on my facebook wall and only 4 people “liked” them. I bet if I’d posted a funny video or something completely inconsequential, I’d have had tons of “likes” and comments. It is pretty crazy that people don’t consider this as important as we do. Jeff is awesome for having stepped up and shared his viewpoint. I’m very grateful for that! And grateful to you for supporting it, too!
    Your guys are ADORABLE! Take care!

    • Hey Angie –
      It’s so easy to nod your head and click on the next link when you read something that bothers you a little, that makes you question something you do without thinking every day. I think that is why it is even more important that those of us who do care talk about it, and often, and passionately.
      I know I appreciate Jeff’s well-spoken post and my friend who initially posted about it. And every post I’ve read from others, you included, have touched me as well. How can they not?
      And thank you – I rather think they are adorable as well, but I have been known to be just a little biased. 🙂 You take care as well and thanks for stopping by!

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