31 for 21 - Day 2 - The Beautiful Bartolone Family's Take On The R-Word

Day two of the 31 for 21 challenge! I'm so very excited about today's post because it features a very touching and beautiful take on the R-word.  

I read the Bartolone Family's post on September 9th and immediately messaged them to see if I could feature it during the National Down Syndrome Awareness Month blogs I was planning.  As I read their description of what the word means and how I too used to use it flippantly and without regard-- it hit a nerve.  Like them, I was also a child of the eighties/nineties.  I also had no context.  No understanding.

The Bartolone blog is not only completely and breathtakingly beautiful, but it is also full of very real and meaningful posts.

This particular post called "worth it" really hit me.  I'm always trying to find the next best way to explain why the r-word is hurtful and why it should be considered a disability slur.  To me it is equal to the words "nigger" and "faggot".  Mean words.  Words used almost exclusively to demean, degrade and humiliate.  As Joey's mom, I am trying to find my way to advocate for him.  To advocate for all person's who face discrimination.  I want to be that voice. My theme for 31 for 21 is "Shedding light where there is darkness."   As parents of children who have an extra chromosome or any other kind of special need or disability it is hard.  As the Bartolone's say-- we don't want to be the word police.  There is a fine line.  You want to stand up to bullies and stand up for the sanctity of life and for those who are unable to stand up for themselves, but you don't want to isolate your audience.  

It is almost like people who have a disability are the last group of people who it is socially acceptable to make fun of.  In September, on the Charlie Sheen roast on Comedy Central a "comedian" said to him that "You've convinced more women to have abortions than the prenatal test for Down syndrome."  Really?  Is that comedy?  It is no longer socially acceptable to call gay people faggots.  It is no longer socially acceptable to call black people niggers.  I am committed to helping convince the world that is should no longer be socially acceptable to call disabled people retarded and that it is no longer socially acceptable to use the word.  Legal?  Maybe.  But socially acceptable, absolutely not.  It is word, that when heard, should cause people to cringe.  To cause people to think twice.

The Bartolone's have kindly agreed to let me re-post their thoughts on the r-word.  If you would like to see more beautiful photos or read more about their journey, please visit them at www.thebartolonefamily.com. 

I hope you enjoy.  I hope you can relate.  I hope you can help spread the word to end the word.

worth it

i can’t pinpoint a day, a time, or a moment when it happened and i don’t remember that first instance where its sound echoed through my head and panged my heart. what i do know is that in those early days and weeks after gabriella was born i was pushed out, head first into a new reality and something deep within me was changing. a different kind of hearing aid had been placed in my ears and all of a sudden this one word, a word that i had heard and used many times prior, came at me like a thousand little daggers. 

as those first weeks grew into months the feelings just came. I couldn’t control them. 

i had many people around me say things like-- 

don’t get too sensitive. 

people don’t mean anything by it. 

they aren’t talking about your baby. 

  

 

but there i was, looking into her precious little face as people flippantly used this word all around me and when i was finally alone i just couldn’t stop the tears. the pain that would swell up inside of my heart. i would try to brush it off, try and ignore it, but i couldn’t. every time i heard it, it was a deep and painful reminder of what little respect our society had for this new, sweet, innocent baby girl of mine. how very little they thought of her.

after having two baby girls, i was now a mom to a baby girl that needed an advocate-

someone to fight for her.

what word could be so hurtful?

retarded. 

what are you trying to say when the words, “ugh, i feel retarded today!” get typed out onto your facebook status? 

that you aren’t working right? 

that something if off with you? 

that your brain isn’t functioning at it’s highest level? 

that you look funny? 

i am a product of the eighties, well... and nineties too.  when i was growing up everything seemed to be retarded. your hair looked retarded. the coke machine that ate your quarters was retarded. when your mom wouldn’t let you go with your friends to the mall she was retarded. when your trapper keeper rings would get all misaligned and screw up your papers it was retarded. every time something looked funny or didn’t work quite the way that it should it was... retarded. 

i said it and i was completely unaware of how it could cut so deep. it was so ingrained into my vocabulary that even in those first few weeks after gabriella was born I would catch myself.  i would try to change the word midsound- something like, “that is rrrreeeee... diculous!” but i didn’t always catch myself and even coming out of my own mouth it was hurtful, actually it was more.

it is highly likely that one day gabriella will come home and cry because of that word and what will i say to her? i want to be able to say that i said something. i want to be able to tell her that i am fighting for her, because-

when i look at gabriella 

when i hold her close to me

when i celebrate with her 

when i pick her up when she falls down

when i see her shy smile spread across her face

when i watch her dance

i know she is worth it.

 

i’m not interested in being the police, 

but i am interested in making you aware.

because i was never aware before i had gabriella in my life. 

so the next time that word comes out of your mouth i hope you stop and think of me and think of my little gabriella.