Wednesday, March 2, 2011

Spread The Word

With hot tears streaming down my face, I type through blood-shot, puddled-eyes.  Nose stuffed from crying, heart aching, mind racing.  The past 12 hours have been filled with moments that were rewarding, memorable, uplifting, crushing and heart wrenching.  How can one day be filled with so many mixed emotions?  Amazing highs and the most upsetting lows.

Today was Spread The Word To End The Word day.  A day honored and celebrated by thousands of high schools across the country with assemblies and speeches and banner signings…a day that students pledge to stop using the R-word. 

Kayla and I began our day early at St. Marks High School.  We were asked to present during both of their assemblies.  The students and staff, all wearing grey Spread The Word shirts, were all so welcoming.  

They greeted us with open arms, balloons and candy for Kayla, a prayer, and most importantly, with acceptance and understanding.

The students put an amazing amount of work into the event, re-creating their own videos about respect, starring their students…clearly sharing an amazing message.  As I took to the stage, Kayla stole hearts.  And while I spoke, I am pretty certain my words sounded more like the Peanuts cartoon teacher “wah-wah-wah”…as all eyes were on Kayla in her little black rock star outfit, complimented with her silver Chucks.  She found an ‘X’ on the stage and began her performance…while I discussed the r-word, Kayla danced…and the crowd filled with “awwwwws” and smiles.  And while they may not have listened to every word I spoke, distracted by Kayla, they got the message.  Kayla was message enough. 

Next we were onto Newark High School.  We were obligated to go to Middletown High School for their afternoon assembly, so we were just stopping by to observe their lunch-time banner signing. While we weren’t supposed to go to Newark High, I have no doubt in my mind that we were meant to go there.  Nothing could prepare me for what I would see.  Nothing.  My life and outlook and fears for Kayla’s future changed one spring day two years ago when I first heard Karen Gaffney speak.  As she spoke about the numerous surgeries she endured and the challenges she has had to overcome she stated that nothing was as difficult as sitting at lunch everyday alone...with no one to talk to.  A young woman with Down syndrome that has endured so much…yet sitting at lunch was so isolating…so unbelievably alone…and described as the worse thing she had gone through.  As she spoke that day to an audience of hundreds of parents of children with Down syndrome, I remember hearing the sniffles and seeing the tears being wiped by tissues and I remember sinking into my seat, stuck to my seat…struck with fear for Kayla’s future.  And today…today as I walked into Cafeteria A at Newark High School, I was overcome with that same feeling and those words came rushing back and swirling through my mind like a hurricane.  I stood in that room full of people, breathless with what felt like 100 pound weights attached to my black Enzo Angiolini boots.  I couldn’t move…couldn’t breathe…and felt like I had been punched in the gut by one of boxing's greats.  As I made my way through the room I felt paralyzed by fear and pain.  I immediately made my way to the vending machine and opted for a bag of Pepperidge Farm Goldfish.  With the snack in one hand and Kayla in the other, I made my way to her table.  Rachel, a beautiful young woman with Down syndrome, sat alone.  By herself.  Eating her lunch.  Not only was she sitting alone, but she sat in the last table, facing the wall, her back to her peers, hunched over her plate.  It was obvious that this situation, this occurrence is regular one.  Well not today.  While I am sure she would have rather had a peer her own age to share conversation with, today she had Kayla and I.  While she munched on pizza, tater tots and chocolate milk {nice balanced and healthy lunch, Newark}, Kayla noshed on her goldfish and we talked about the recent Valentine Dance.

It was hard, but I held in my emotions.  The shocking part of this situation…or perhaps not shocking now that I think about it was the willingness to help from the faculty that were assigned to lunch duty that day.  As Ruth, Kayla, and I approached them to ask permission to attempt to speak above the 300+ students, we were met with a ridiculous amount of opposition.  As Ruth introduced herself it was almost as if an instant barrier went up and while I can’t quote word for word what the one faculty member said in response to our request, it was something to the effect of “if you want to speak to our students, you should schedule to come here to do so”.  Clearly she didn’t understand our request, or at least I hoped Ruth clarified that we were here for the Spread The Word event and the banner signing.  We simply wanted to remind the students to get up and sign the banner hanging on the wall; pledging to stop using the r-word.

After our clarification, I was sure we would be met with an “absolutely, whatever you would like to do”.  Instead we were told that {again, paraphrasing} “while some students have an interest in Special Olympics and ‘those’ type of events, most in this room wouldn’t care and {we} would basically be wasting our breath”.  The faculty members then suggested if we had a message to share, perhaps we should walk around to individual tables…and they went back to their conversation.  And there you have it…I stood there and thought to myself…no wonder Rachel is sitting alone…because apathy is not only tolerated…it is exemplified by members of the faculty.  And while this school has some amazingly involved students {and I am sure some amazing faculty}, it is obvious that there are flaws.  While I am sure that the events at this school changed some minds,  I left with a heavy heart with thoughts that weighed even more heavy on my mind.

Making our way to Middletown High School we needed to stop for lunch so we went to Kayla’s favorite place…McDonalds.  After feeling completely mentally drained I could use a nice healthy lunch of greasy fries...large, of course because I was saving calories by not getting a burger {nice justification, eh?},  a yummy vanilla ice cream cone and a diet coke.  We ate and I drove and we talked about random things like silver shoes, balloons, necklaces, stickers and pink lip gloss…all important stuff.  My girl has an incredible way of changing my mood.   

Recharged with energy we entered Middletown High School and Kayla met her 2011 Blue-Gold Buddy, Amanda.

She was very excited to meet her new buddy…and I was anxious to speak again.  I contemplated scrapping my speech and focusing on what I observed at Newark High but I was afraid my words would not come out of my mouth as eloquently as they were forming in my head.  The assembly was well organized and planned and celebrated the 2011 buddies partnered with Middletown students.  Together they took the stage…partnering together...showing unity and acceptance to their peers in the audience. 

With my speech in hand I made my way to the stage with Kayla and Amanda.  Again met by “ooohs and aaahs” because of Kayla…which was all about to change.  My speech focused on the hate that the r-word conveys…the separation and segregation of a population of people with one little word…just as hateful and inappropriate as the n-word…and with that…a wave of whispers fell amongst the crowd.  Unfortunately because the r-word is used everyday describing just about anything negative, it is not perceived as a word of hate.  A word that dehumanizes and devalues any population of people is a word of hate…and today I gave these students food for thought.  While they may not have taken to the message as I had hoped, I guarantee that they are talking…

I can hope and imagine a day when people no longer use the r-word.  Not to describe themselves doing something dumb by saying “I am so retarded”…not by responding to their friend doing something ridiculous by saying “you are so retarded”…not a reaction from the salesclerk to the slow working computer saying “it’s so retarded”…not then…not now…not ever. 

After this already long day we made our way to St. Joseph’s Church in Middletown to pay our respects to the family of Ryan Wagner. I can tell you that just as my body had been overcome with fear and became powerless and breathless as I entered Cafeteria A…that same feeling came rushing back.  I felt a Mom…placing myself in her shoes.  We are never supposed to bury our children.  Ever.  But especially not when your child is just 17…just preparing to graduate high school…just starting out in life…and as we paid our respects and made our way back out the door and onto living our lives came infinite clarity.  Each of us live our lives…each day coming like the turning of a page…wanting more…wanting to see more, do more, live more.  Wanting to turn the page to see what happens next…on the next page…in the next chapter…but we are all writing our book of life as we go.  We are right here right now for a reason.  Just as I made my way into Cafeteria A today for a reason.  And what will I do with that?  How can I change future lunches for Rachel?  While I am not struck with amazing wisdom through my exhaustion and heavy eyes, I can promise you that I will not forget Rachel.  I will not forget her sitting alone.  I will not forget.

Today was long…but powerful.  Amazing…yet amazingly overwhelming.   But today I lived and I loved and I Spread The Word To End The Word with my girl by my side…and if just one person stops using the r-word because of Kayla, my day was a success.  Help Kayla live a better life...a life of acceptance, inclusion and respect...spread the word to end the word, friends...for Kayla.  Click here to take the pledge.


  1. I want to give you a gigantic hug! Then I want to get on my knees and sing Bette Milder. Thank you so much for doing this. Thanks to you and the other parents and children. I am totally moved by the Rachel story. I met her at the dance. I remember her especially because if People magazine were covering the event, she would have been dubbed 'Best Dress'. I want to go have lunch with her TODAY! That's how powerfully touching your story is. Practically speaking though, it's a little awkward and frankly kinda creepy to surprise a teenager in her high school cafeteria.

    Thank you again, Amy. Your blog is phenomenal, and you actions stupendous. I'm not kidding about the seranade are the wind beneath my wings.

  2. Ok. This time I'll let you make me cry yet AGAIN! Not tears but a big old ugly cry with all those funny faces and snorting noises. I too want to go have lunch with Rachel!!!! Thank you so mch Amy (how can one person have so many gifts?). I would like to know, as I'm sure others would, how you are addressing this with Newark. When are we all going to have a meeting with this faculty? Please let me know as I think they need a proper education or discipline action.

  3. This is a most complex problem. Whatever word used for a difference from the norm, if the norm fears and defends itself from those who appear different, will become pejorative in time. There are so many examples, not last of which is "liberal." Look what's happened with that word. "Retarded" at one time had an honest application, but that is so far past we cringe to hear it. In education, everything becomes a matter of establishing differences: right from wrong, correct from incorrect, healthy from injurious, probable from impossible, so this differentiation becomes inherent in our learning and resolving processes. The problem, though, isn't in the word projecting or underscoring differences, nor is the solution banning a word: it just drives the fear underground, as it did with "nigger." The problem lies in our innate fear of difference, and the solution rests with the abolition of fear. However, that must always be tackled one person at a time, which is a monumental task, even though each individual can be reached in a group setting. That those cafeteria watching teachers tried to dissuade you, because of their apathy or jadedness, underscores how exhausting it can be for teachers working daily to eradicate fear. Kudos to you for trying, but be aware of probable exhaustion: fear has a way of replicating itself in manifold ways, and at multiple opportunities.

  4. Hi Amy...I applaud your blog, I love it as I comment almost always. Thank you for your works within the community and beyond.
    I had the unique pleasure of speaking at Newark High yesterday. After spending quite a bit of time looking for a parking spot, I finally arrived to the office asking where I should go for the Spread the Word event. I also asked the office attendant, "My goodness this place is enormous, how many students attend?" Her response, "A lot!" I said, "How much is a lot?" She said, "1500 students." I was paralyzed with fear of having to speak in front of that many students, but when I was escorted to the assembly, I was confused. We were in a huge gymnasium and there were a hand full of students. I began asking a school this big where are all the students. The school gave the students a choice... attend or not. I ended up speaking in front of about 90 students, yep...90 out of 1500!!! However, I did thank each of them as I knew they had a make a choice to be there. At the end of my speech I told the group how disappointed I was when I walked in and only saw the small group of 90 students, but I also told them it only takes 1. It only takes one to change the minds of many. It did hit home and I was thankful for the students that did make the effort, but obviously many more need to make that effort, faculty included. So Amy, my challenge to you is this...can you get us an appearance in front of the whole school or just the senior class? If you can accomplish this, I would be more than happy to return with a newer, more center-focused speech. Nothing would please me more! Good luck!

  5. Amy- Thank you, once again, for putting into words how I feel. Thank you for advocating for our kids. I've never heard of anyone going to the schools around here but you can bet I will be checking into that!

    I'm so glad that I met you. I love your beautiful heart and am honored to call you my friend.