Tuesday, October 12, 2010

Down Syndrome Awareness Month - Post 4

October is Down Syndrome Awareness Month

My son has Down syndrome.  It's okay to say the word "Down syndrome."  I've met some people that whisper the word like it's forbidden or wrong.  It is a genetic condition.  It is not a disease.  You can't catch it.  You are born with it.  Let's say it all aloud together.  Down syndrome, Down syndrome, Down syndrome!  Now don't you feel better?  Down syndrome is beautiful and nothing to shy away from or be ashamed of.

Down Syndrome is Beautiful - Video

Since we're are talking about the word "Down syndrome," let's go over some appropriate usage.  Pretend this is English class.  Did you like English class?  Hope so, because it's time for a lesson.  Down syndrome was first discovered in 1866 by an English physician named J. Langdon Down.  Dr. Down did not have Down syndrome, he merely discovered it.  Therefore (English students are we paying attention?) the word is Down syndrome NOT Down's syndrome.  No apostrophe is necessary. 

Now on to lesson two.  Down syndrome is a genetic condition. It does not define a person.  Therefore, when speaking about a person with Down syndrome, please use 'person first' language.  I will give you some examples.  Someone would say "that boy with Down syndrome has beautiful almond shaped eyes."  NOT "that Down's boy has beautiful almond shaped eyes."  Those words "down's boy" just irk me and it just doesn't feel right.  Please remember to put the child first, not the genetic condition.

Almost done, lesson three.  I know many people still say the word "Downs."  This just may be a personal preference, but I will never say that word.  My son has Down syndrome, not Downs.  Used as an adjective, the word "down" means unhappy or gloomy.   I guess it just sounds so sad, leaving off the 'syndrome' part.  That's too bad Dr. Normal or Dr. Perfect didn't discover Down syndrome.  Then our wonderful kids could be called "Normals" or "Perfects."

Last lesson, lesson four.  Never ever ever ever EVER speak, utter, whisper, shout, type, text, twitter or scream out the R-word.  For those that don't know which word I am referring to, it's the awful hurtful word retarded.  I hate even typing it.  In today's society many many people use that word to describe something they did as stupid or dumb.  Really, so a person who has an intellectual disability is stupid?  My son Jack is dumb?  I don't think so!  Jack can sign over 25 words, he can learn a new toy with just one demonstration and he can understand tons of receptive language.  Please remove this word from your vocabulary.  It is hurtful and inconsiderate.  The 400,000 individuals with Down syndrome and their friends and family would appreciate it.  It's all about respect.  And they deserve to be treated equally.

Hope you enjoyed English class boys and girls.  I always did want to be a teacher.  Thank you for letting me live out my dream.

Also, I consider myself a very open and honest person, so if anyone ever has a question about Down syndrome or Jack specifically, please do not hesitate to ask.  I would be happy to answer and explain anything.


  1. I love that picture of Jack. He looks so grown up. Wonderful post! Can I copy it and use for my own? JK, no one would believe they were my words. You wrote it out so beautifully. I can't wait to see you Thursday. Woo hoo! Party!

  2. I agree with you on all of these! Especially person first language. When we were in the hospital I got so tired of hearing, "Down's babies" or "because he has Downs". I guess they need to be informed, they have no idea how annoying it is.

  3. I have no idea how I got here but can I just say that the little man in that photo is so unbelievably gorgeous. That smile has tugged at my heart.
    Just a yummy very handsome, happy looking little boy.
    Hope he is as happy and doing well as his photo suggests.
    Cheers. Nina.