Wednesday, March 6, 2013

FX Advocacy & Spread the Word all in ONE day!

There has to be a quote somewhere about how making change is never easy, or about how jerkweeds will always find a way to attempt stand out and overshadow your hard work to make the world a better place.  I’m sure there is, if not, maybe by the time I’m finished writing today, I’ll have created one.

Today is 2 of my favorite events on the same day – which if I find to be incredibly cool and perfectly appropriate – and reason for me to be in an exceptionally chipper mood!  Yay!  Today, I am not alone – today thousands of us are spreading the same messages. And while I do believe in the power of ONE voice – I know the magnitude of the power of thousands of voices (and LOVE it!)!
First, today is Fragile X Advocacy Day in Washington DC!  While, for the first time since I started attending in 2007, I am not in DC (thank you wickedly horrible flu from hell) over 180 of my Fragile X family and friends ARE and I am beaming with pride (even as DC attempts to shut down today due to some snow).  This is not an easy trip to make. It’s more than just the financial commitment it takes to get to DC to cover your travel, hotel, food (and new clothes!) and time off of work.  It’s about time away from our families and for anyone who has a special needs child, you know the efforts it takes to change routine, schedule, line up caretakers, get all of your ducks and their back up ducks in a row that is needed just so you can use the bathroom, let alone leave for 2,3 or 4 days!  But, totally worth it!!!  And, as I said, I am beaming with pride with the work they are doing, not just for Fragile X but for all disabilities (fingers crossed that THIS is the YEAR the ABLE Act FINALLY passes – why on earth anyone doesn’t see it right or fair for us to be able to save for our children’s futures like those with typical children is beyond my comprehension.)
Today is also the official Spread the Word to End the Word day!  If you are not aware, the “word” is the “r” word.  (retard/retarded).  Thousands of people will step up to the plate today and take the pledge to STOP using this derogatory word.  Family members like me, share our stories, the pictures of our loved ones who, like us, are impacted and hurt by the use of this word.  Amazing progress has been made thanks to incredible organizations like Special Olympics and Best Buddies who have created this campaign that has been a voice for millions!  Again, I am so extremely proud of everyone who has made this change in their vocabulary and used their voice to be sure others do the same!
So, with all of the greatness of today – why do I need a quote about jerkweeds?  Because, what you will see today is that while people, like myself, will be open, honest and share a peak into our lives  other people will declare today their national “be an a-hole” holiday and give every reason why 1. We should not support funding for people with disabilities and 2. Why it’s ok to use the “r” word.
Now, neither really deserve recognition or argument, but change doesn’t happen without using your voice, your words.  And for every whiplit that is going to say my children don’t deserve a better future, or respect – MY voice and the voice of my family and friends will be louder.  We will say YES THEY DO.  More than that – we WILL make it happen.
I have pointed out a hundred times how ridiculous you look when you attempt to argue either of these.  I point out how hurtful your words are when you use the “r” word.  I hear a million excuses, my favorites are “I didn’t mean it like that”  and “I would never use that word about someone with a disability” or “YOU are just too sensitive”.  And my arguments of “You didn’t mean it as a compliment”, “It is a medical term to describe my son who, if you were trying to compare, you would need to use as a compliment not a put down” or “then you shouldn’t use it on anyone because you never know who is listening who DOES have a disability – they aren’t always easy to see” and of course “No, I’m not too sensitive.  I am respectful. I am a mom. I am a friend.” People still feel the need to attempt to validate their actions.

Why?  Is it really soooo hard to say “I’m sorry.  I didn’t mean to be hurtful. I see where you are coming from. I won’t do that again.”  There are thousands of words you can use instead.  Forgot your book?  Such a dork.  Not happy with how you are dressed?  I look silly.  Made a mistake?  I am a ziblet.  What are you NOT??  A retard.  Or Retarded.  So stop it.  It’s not funny.  Your friend ran into the wall, is late for work, forgot something important?  Guess what?  They are not retards or retarded either.

And if you are looking for a word to describe my son – Funny, handsome, smart, caring, loving, talented, athletic, silly, good, wise, hilarious, adorable, cute, compassionate,  kind hearted,  considerate, clever, cool, respectable, gentle, thoughtful… FRIEND, BROTHER, GRANDSON, NEPHEW, COUSIN…SON…. HUMAN.  The list – it is endless.  But the “r” word, won’t be found on it anywhere.

SO to the jerkweeds – who think pointing out on someone’s status update or Tweet or Blog the different meanings to “retard” and the ways you can use it appropriately  “to slow music/fire/engines” – go back and listen or read what the message was.  Have some respect.  For those who take today as their be a jerkweed holiday and attempt to validate the use of using the “r” word in a derogatory way or to tell us support and funding isn’t necessary – our voices are louder than yours.  While we find you annoying, crude, and frustrating – there comes a point when we simply can’t hear you any more at all over all of the people who are doing and saying the right things.  And that… is where we are now.
What?  Did you say something negative?   I’m sorry, I couldn’t hear you over all of the incredible and strong voices saying what is right and  making a difference.
Thank you, to everyone who is advocating for Fragile X, the ABLE Act, for support for the disability organization/funding closest to your heart and for Spreading the Word to End the Word!  With all of my heart – THANK YOU.  On behalf of my children – THANK YOU.
To Parker and Allison – Mommy loves you with all that I am, all of my heart, all of my soul, every breath I take.  I will always do my best to be sure this world becomes a better, kinder, more respectful, accessible place for you.  You are my world and I will give you a better one in return.  I love you.

Here is our 2013 Facebook Message message:

March 6th is the official Spread the Word to End the Word Day for 2013!

Parker and Allison were both born with a genetic disability called Fragile X Syndrome. ( ) Fragile X is seen in Parker and Allison in many ways including sensory processing difficulties and extreme anxiety in both. For Parker, who is significantly more affected by Fragile X than his sister, it has also caused intellectual disability (mental impairment).
For all of Parker's friends, all of his teachers and classmates at Ingersoll Middle School -for Allison's friends, for MY friends - I have challenged you before and I am challenging you again - YOU are a strong VOICE, YOU are his FRIENDS, YOU are the CHANGE for our FUTURE - I need YOU to not only take the pledge but to be sure everyone takes it and LIVES up to the challenge EVERYDAY!
We hear all of the time "I didn't mean it *that* way" or "I would *never* direct that word at someone with an intellectual disability" and 1,000 other excuses about how overly sensitive WE are to the word instead of just apologizing and changing the way you speak. Do you realize how you sound attempting to defend yourself? Is that fight really more important than just using a word that is actually fitting and appropriate instead of the "r" word? I really don't think, at least I hope, you don't enjoy the hurt it causes.
Please remember PARKER & ALLISON can HEAR YOU. I can hear you. The "r" word - it hurts. It stings. Intended to or not, it takes our breath away and it is a derogatory word. You are NOT saying it to be happy, polite, joyful, appreciative or as a compliment so stop validating your use of it when it is so clear it hurts people everywhere. There are dozens of other words you can use that do not technically describe someone with a disability. Use those words the next time you forget something or make a mistake or whatever reason you feel the need to use the "r" word.

Please - help us - SPREAD THE WORD TO END THE WORD - stop using the "r" word. Take the pledge. CHANGE YOUR WORDS. Use your voice. For me. For Allison and the love she has for her brother. For Parker. For our world. For yourself.

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