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Day 9 of 31 ~ A Day in the Life ~

09 Oct

Thought for the day: Down syndrome ~ Definition or Description?

Disclaimer: Any thoughts or ideas presented here are in no way meant to produce feelings of guilt or shame.  I am simply trying to put forth my opinion in a real, vulnerable way.  Please take what I say to heart.  But please do not take it personally.  That would be a travesty to me, and would be completely counterproductive to what I hope to attain from writing out these thoughts.  Thank you in advance:)

Down syndrome definitely affects Jake.
His physical development is affected.  He will take longer to hit milestones.  He will struggle for longer to perfect both gross motor skills and fine motor skills.  His speech will be delayed.
His cognitive development is also affected.  He will learn more slowly.  He will not progress as far as most.

Down syndrome definitely affects Jake.

But…Down syndrome does not define Jake.

Jake is an incredibly happy child.  He gets this character trait from his dad.  Jake can also be incredibly stubborn.  He gets this from his mother:).  Jake is a very social little boy, and loves to be around people.  Jake is an independent learner.  Jake loves to play with others, but is also quite content to play by himself, learning how to manipulate his environment through exploration.

Down syndrome does not define Jake.

Here’s where the rub comes in for me.
It bothers me more than I let on when people refer to Jake, or to other individuals with Down syndrome, in a way that would suggest that the diagnosis of Down syndrome defines them.  I recognize that this is most often unintentional, and not out of malicious or condescending intentions, and I have often been asked about the proper terminology.  Hence the intent of this post.

One of the phrases that I struggle with is the phrase “Downs baby“.

I don’t see Jake as a “Downs baby”.  I don’t see him as a “Downs toddler”.  He is a 16 month old who has Down syndrome.

Here is the difference in my eyes.  Jake is a person first.  Jake’s diagnosis of Down syndrome is a description of a part of who Jake is.  But it does not define him.  And when the phrase “Downs baby” is used, I feel like it becomes a definition.  The Down syndrome takes over, and becomes the defining feature of the child.  And for those of you who know Jake personally, it is the furthest thing from his defining feature.

At the end of the day, the point is that I want the emphasis to be on Jake as an individual, not on his disability.  For this reason, I have adopted “person-first” language (see CDSS website “How to talk about Down syndrome” for more info on this).  Will you adopt this language with me?

On a totally different note, today was great!  We had PREP in the morning, Jake had a date with Gramma in the afternoon, and I had a much-needed nap:)  And we got some cute pics in the Bumbo chair!  Happy Tuesday!  Catch you tomorrow…

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5 Comments

Posted by on October 9, 2012 in Uncategorized

 

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5 responses to “Day 9 of 31 ~ A Day in the Life ~

  1. Jenny

    October 10, 2012 at 7:59 am

    Thank you for writing this! I have read lately so many Mom’s in the Ds community claiming this phrase does not bother them at all, and that those of us who are bothered by it are making too big a deal out of it. IT BOTHERS ME. My child is not a “Downs”…My child has a name, it’s Russell, and that’s what I expect him to be called.

    Oh, btw, love the hair on your little guy 🙂

     
  2. Johanna

    October 10, 2012 at 9:27 am

    People are entitled to their feelings. If that phrase bothers you, then it bothers you. That’s ok. The problem I see with this arguement is the assumption of causality. That putting “down” before “baby” necessarily means that the speaker doesn’t see the child as an individual. This is an assumption, not a fact. If my doctor uses the phrase, yet treats my daughter as individual and treats her individual syptoms, how can I conclude that she sees DS first? It just doesn’t logically follow for me.

     
    • karynslater

      October 10, 2012 at 3:37 pm

      Hey Johanna,
      Thanks for your comment! I appreciate differing opinions (actually have read a few blogs with differing opinions on this issue lately…and found them very interesting). The thing I would say to your comment is this: I am not necessarily assuming causality. I am not saying that everyone who uses that phrase doesn’t see my child as an individual. I actually know that to be false. But what I am saying is that for me personally, that phrase becomes the definition…which is what I am trying to stay away from. And if it is that easy to make the switch to people-centered language (“baby with Downs” instead of “Downs baby”) then why not? I do appreciate the feedback and welcome your thoughts for sure:)

       
  3. Virginia

    October 10, 2012 at 5:08 pm

    Karyn…….I agree with your perspective 110%!! As a nurse, I have often heard staff members say things like, “the gallbladder in room 36B” or “256 was up twice in the night.” I cringe at those things just like I do when I hear “Downs baby!” Jake is a precious little guy who will likely have challenges; but those challenges don’t define who he is. Thanks for expressing your thoughts!
    And by the way, I love Cole’s hair-do!! 🙂

     

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