All Lives Matter – Karen Gaffney

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Earlier this year a friend told me she cried when she found out that Yirmiyahu had Down syndrome. I asked her why? After all, I didn’t cry. “Because it was so hard.”

That’s what I would have thought before I learned about Trisomy 21, too, but it’s not the reality. That’s a perspective based on very limited information that isn’t globally applicable. No, I don’t have the amazingly sunny personality that enables me to see bad things as good things – I’m a very realistic person. Reality is what a friend of mine with a daughter with T21 told me several years before Yirmiyahu was born: “Down syndrome is just not that big a deal.”

I know it’s hard to believe. Yes, people with Trisomy 21 do have challenges but they also are capable of far more than what is generally assumed to be true. Learning this as a mother of a very new infant with T21 gave me an entirely different perspective and vision.

Below is a talk by T21 advocate Karen Gaffney. Karen herself has T21. Hearing Karen speak is such an encouragement to me and in the TED talk below I think you’ll also appreciate what she has to say.

Avivah

Comments

9 responses to “All Lives Matter – Karen Gaffney”

July 15, 2015

rachelli

amazing, amazing! such an amazing woman! her parents, family, friends, teachers input has made a tremendous breakthrough.

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1. July 15, 2015
  
  Avivah
  
  And not to forget to credit Karen herself for her success! 🙂
  
  Reply
  1. July 16, 2015
    
    Dina
    
    Yup, that’s another major point! Break the stereotypes, and recognize that a kid with T21 is not a “patient” who was treated successfully, but just like anyone else with challenges who overcame them.
    
    Reply
    1. July 16, 2015
      
      Avivah
      
      Exactly, Dina!
      
      Reply
July 15, 2015

Galia

There are so many fewer babies being born with Down syndrome in the US today. But the reason why this is so is sad and frightening.

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July 15, 2015

Sharon

What amazed me during pregnancy was the pressure the doctors put on me to test or sign a waiver. They were so sure I wouldn’t want to parent certain types of children that one doctor didn’t even want me as a patient if I’d be willing to risk a “non-perfect” (sorry) child. Where do they learn this? Is that what they consider humane, wise and enlightened?

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1. July 16, 2015
  
  Avivah
  
  I spoke to our new pediatrician last week and told her how disturbing I found the doctors comments and attitudes. She told me most doctors have had very few experiences with people with T21. So they generally have the same limited view and prejudices as anyone else but they have the weight of authority behind them when they speak.
  
  I was repeatedly asked after Yirmiyahu was born why I didn’t do extensive prenatal testing and was getting very fed up with their attitude. I finally told them, “Why are you asking me this?? He’s here, we’re happy he’s part of our family and we wouldn’t have aborted him if we had known so what difference would it have made if I did the testing?” The doctors had a kind of taken aback look and one mumbled, “Ah, right.”
  
  Reply
July 20, 2015

Deb Seymour

Beautiful, inspiring story that has me weeping happy tears! I also went out and watched some of Karen’s swimming videos (mainly the Lake Tahoe one- wow!) . Thank you for telling us about Karen, but most importantly, about Yiramiyahu’s progress and 3rd birthday! I am inspired at the things you have figured out about how to teach Yiramiyahu and work on his “therapies”- things that have blown away his doctors and all. With much admiration, Deb Seymour, Seattle (I read your blog more than I comment, found you via Julie Bass a few years ago:-)

Reply
1. July 20, 2015
  
  Avivah
  
  Thank you, Deb! I’m happy to know you’re here!
  
  Reply