Wednesday, August 15, 2012

you can't change the world

Today I am heartbroken and defeated.

Darren and I had one of those conversations last night that left me alternately banging my head against a wall and crying hysterically.

It all started when I asked him about the comment Wayne Brady made at the roast the other night.  I'm not a fan of roasts and didn't watch, but I knew that Darren had.

I asked him if he'd heard the joke....he had.  I asked if he was bothered by it.  Nope, because he was making fun of another comedian.

Ummm, yes, but at the expense of someone just like our daughter.

Well, what do you expect me to do about it?  You can't change the world.

First off, I expect you to care.  I expect you to be at least bothered by the comment.

And again, I was told I shouldn't worry about stuff like that because you can't change the world.

I tried changing tactics and asking him what he thought Down syndrome awareness was exactly.  (I just ordered a Ds awareness bracelet for him, at his request, so I thought this was relevant).  He said it means telling people they shouldn't have abortions.

Okaaay, but many people have abortions because of outdated, ignorant and sometimes scary stereotypes.  The exact same stereotypes that Wayne Brady based his joke on.  So, if we can change people's perceptions of what Down syndrome really is people won't immediately think an abortion is the answer.

And once again....people are cruel, you can't change the world.

But the thing is, I think I can change the world.  No, I can't do it alone, but I'm not alone.  There are so many people working towards the exact same goal.  My direct impact on the world may be small.  Whether it's one person or ten people, I've still made a difference.

But today I'm heartbroken and defeated.

I failed to find the words to explain that we can make a difference, that we can change things.  And if I couldn't explain this to Darren, my husband, someone who has a vested interest in making the world a better place for Claire, how am I supposed to make other people see that their words and actions really do make a difference?  Maybe I haven't made an impact at all.  Maybe people have stopped using the R word around me just to placate me.  Maybe everyone around me really does see Claire as the stereotypical burden and they're all glad that she's not their child.

Today I am heartbroken and defeated.


  1. Wow, that's a really, really tough position to be in. I wish I knew what to say, except that sometimes men (including mine) have heads made of big rocks. As Claire begins to enter elementary school and IEP meetings and the fight for inclusive educational rights begin, he may start to see the bigger picture, how important it is for people with Ds to be *included* and *respected.* For him it may take a few more in-your-face reality checks. Be patient with him...he'll get there. (I take it he doesn't read your blog...?)

    Wayne Brady's comment was particularly heinous because he made a real, live person (a CHILD, no less!)the butt of the joke. Someone who uses the R word indiscriminately could *conceivably* be *temporarily* let off the hook on the defense that they didn't *mean* to be refering to people with Ds, they just used it as a general term of speech. Wayne Brady can use no such excuse, and has crossed the line to unforgiveable. Too bad. I liked him.

    (sorry, didn't mean to write a book here...)

  2. Girl, I've had this fight with Mark. It is so difficult when the one person who is supposed to be your partner in the fight...isn't. Hugs to you.

    1. I always felt that my main goal in life was to "make a difference in the world!" (You didn't know that , did you?) After 33 yrs of teaching, and educating over 700 children (most of which were labeled with special needs), I know that I have accomplished my goal. You, my dear, have just begun. You have made a huge difference in the lives of your family members and friends. I am in awe of your strength and fortitude. In fact, I am always in awe of all you women that respond to this blog...your strength and commitment to each other and to your children is inspiring. Defeat is not in your future, my dear. Cry (because sometimes it is called for) and then Listen for your next challenge. You may not be able to "change the world" single-handedly but you can change one stubborn/uneducated mind with the great love in your heart! You are an amazing woman. I knew it the moment I laid eyes on you! Love...

  3. After Addison was first born, we had company over for dinner (I think she was like 6 months old). And in the middle of the dinner conversation my husband burst out "That's so retarded!" And I was in shock. Our friends didn't even notice and laughed at the point of the joke, and I was just sick. When I confronted him later, he didn't see what the problem was. I told him that he can't say "retarded" because that's Addison's medical diagnosis. He said, but she's not retarded- she's amazing.
    He had so separated her from the labels that he didn't get why I was so upset. Needless to say, that's when I started posting more NO R WORD posts on my blog because up until then I assumed that everyone else was doing such a great job, what would my little voice do?
    Anyway, just sympathizing with you because I truly do know how you feel on this one. Aaron has since changed his mind, but we had a rough couple of months "fighting" it out. sigh.
    Hugs to you. I hope he's able to see a different side of the argument soon!

  4. It is so heartbreaking when someone so close to you doesn't see how their words or other's words and their reactions to those words effect others. Since having Tily I have been more aware of the things I say about others. I try to think first how would this person feel if they were here listening. It had changed the way I speak.
    I am so sorry that when you think you are getting through to so many the ones closed to you don't seem to get it. We all just need to be more respectful of all people no matter what.
    You are a great advocate for Claire and all people with Down syndrome. I have followed your blog for 2 yeard now and I am always so inpressed with all that you do in trying so educate others about respecting others.
    Hang in there.

  5. I can so relate to this post Melissa...*sigh*...If it makes you feel any better my Husband sounds a lot like yours!

    You and Claire are making a difference in peoples lives...You probably don't realize how many. I have followed your blog since Claire was super tiny...I have loved hearing your thoughts, there is no way people reading your words are not learning from it.

    And yes, we can change the world...Change is slow, each small step counts, but it will happen....Look where we are now, our kids are no longer locked up in institutions! Each one of us and our children are making a difference in some ones life...So we'll just keep on going :)


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