Spread The Word To End The Word

Wednesday March 7, 2018 is “End The Word Day” so I thought I should share this post from 2014 for anyone who isn’t familiar with the “Spread the Word to End the Word” movement.  To learn more about the movement, visit their website here,

I hope you will join me in taking the pledge:

I pledge and support the elimination of the derogatory use of the r-word from everyday speech and promote the acceptance and inclusion of people with intellectual disabilities.

Anna G & Anna C

Anna G & Anna C

About two years ago, I made a frustrating mistake, nothing big but one that would create extra work for me. In the moment, I said something out loud, without thinking. Thankfully, there was only one person around to hear my shocking word choice.

“I can’t believe I just did that,” I said. “I’m such a retard.”

The expression on my team member’s face is what made me realize what I had said, as she looked at me with disgust and disappointment. And then, my mind went immediately to the precious faces of the people I love so much and their families. I was instantly ashamed. How could I, of all people, have used that word? And even though I didn’t say it with malice, how hurt would they all be if they knew I had used it?

I was born in 1960 and have lived in Alabama all my life. The “N” word wasn’t part of my family’s vocabulary but I heard it, all the time, all around me. The first time I remember understanding that the “N” word was horrible and hurtful was when I was nine and someone I knew used the word in front of an African-American woman who was a guest in our home. I will never forget the look on the woman’s face … the look of humiliation and silent outrage and hurt. Even though I was only a child and was being raised in the Deep South during the height of the Civil Rights Movement, I grasped the implications of that word because I saw the effect it had on the face of a woman I knew.

The “R” word is every bit as hateful and as hurtful as the “n” word, is every bit as derogatory and pejorative as any ethnic or racial slur people invoke. The definition of “retarded” is: less advanced in mental, physical or social development than is usual for one’s age. The “R” word used to be a medical diagnosis but today, the medical community uses “intellectual disability” and the “R” word has become a convenient slang, something people use to describe others or actions in a deprecatory way. This needs to stop … like yesterday.

When our mothers told us, “Sticks and stones can break your bones but words can never hurt you,” they were just trying to make us feel better. We all know that many times, words hurt even more than punches. You’re so gay; you’re such a Jew; how ghetto is that; you’re so retarded … sure, they’re just words but when used in that context, they are words meant to imply inferiority and insult, words that are used with the intent to throw a punch more powerful than a fist.

Shauna painting in The Connection

Shauna painting in The Connection

Last week, I asked one of the girls in Project UP a question. She looked at me with panic as she frantically searched her mind for the answer. I gave her a hint and when she remembered it, her face was flooded with relief. Because she is intellectually disabled, it is difficult for her to process information as quickly as I can. She has to work ten times harder than I do just to answer a question … or write her name … or say the alphabet. This doesn’t make her dumb or stupid or inferior; it actually makes her smarter than me because she has adapted to her disability by finding other ways to cope with a world that is difficult for her to navigate. She is every bit as valuable, her feelings every bit as important as yours and mine. She told me once that she knows she has, “Something called Down syndrome” and that, “It takes me longer to learn things” but what she doesn’t know is that people use her diagnosis as a way to disparage or insult other people. I hope she never learns that.

One of our social events at The Connection

One of our social events at The Connection

We’ve come a long way with the “N” word…we’re making headway on the negative use of “gay” and “fag” and “homo” … we still have a long way to go with all the other ethnic and racial slurs we hear every day. It’s easy to use a word in a negative way to cast aspersions on a group if we don’t know anyone who belongs to that group but when we put a face with that word, it becomes personal. Before I knew people with special needs, I didn’t think about what it meant to use the “R” word but now that I know so many, I see a face when I hear that word … a child, an adult, a teenager, a parent, a brother, a sister…the faces of the people who would be hurt by the use of the word. Which makes my thoughtless use of the “R” word even worse.

I pledge not to use that word again…please join me in this pledge!

Nathan at NRG Dance Convention in Atlanta

Nathan at NRG Dance Convention in Atlanta

On Taking A Girl With Down Syndrome To The Prom

Every spring, I see posts and articles like this one, about a handsome quarterback who invites a girl with special needs to be his date to the prom. Messages threads on multiple postings of this story, and others like it, always share a common theme:

“This boy restores my faith in humanity.”
“A true hero. His parents must be so proud.”
“His parents raised him right.”
“What a kind and wonderful thing this boy did to give her a night she will never forget.”

Yes, it is wonderful to see “typical” kids including kids with special needs in activities and it’s true that this boy…and the hundreds like him who ask someone with special needs to proms and homecomings…is clearly a kind and compassionate friend. This particular story isn’t just about the boy asking the girl on a date to a big event; it involves a friendship they have shared since fourth grade and the promise he made to her when they were ten-years-old that they would go to the prom together. So he gets multiple brownie points for being a man of his word. But I personally don’t think he’s a hero or that he extended an extraordinary act of kindness to a girl.

I think he’s a guy who wanted to ask a girl he likes and values to go to the prom with him. Period.

Why do we think he has done something heroic and selfless by asking his friend to share this right-of-passage, milestone moment with him? Why wouldn’t he want to ask someone who has been his friend for seven years to attend the big event? Maybe he asked her simply because he thought she would be the most fun date he could possibly have.

This boy might have been concerned that asking a “typical” girl to the prom – maybe the Homecoming Queen or a cheerleader – could mean that he’d spend the evening waiting on her to emerge from the bathroom, where she would spend most of the party gossiping with her friends. Or he might have worried that other potential dates would go to the dance, get totally wasted and puke all over his car and her expensive dress, which happens with alarming regularity at the high school parties in my community. Maybe he didn’t want to share his prom with a girl who would look at the other kids with judgement or critique the others girls’ dresses or hairdos. Why is it hard to believe that he chose to ask her – and she chose to say yes – because they like each other?

What if he asked her because he knew that she was the girl would treat the evening with the respect it deserves? What if he knew that she was the girl who would cherish the evening, say “yes” every time he asked her to dance and savor everything about being there with him? What if he knew that she was the girl who would make him feel like a prince if he treated her like a princess for one special evening?

To believe the notion that kids who are friends with kids who have special needs are somehow more noble or heroic than other teens is to think that there’s something wrong with being friends with kids who are “different.” He took her to the prom because he felt sorry for her or he took her because he wanted to make himself look good to others or he took her to the prom because no one else would.

Excuse me, but look at her…she’s gorgeous! Why can’t we imagine that he took her to the prom because he thinks she cute? And dare I say it…why is is hard to imagine that a typical teen might have a romantic interest in a teen with special needs? I loved the episode of Glee that featured Becky, the cheerleader with Down syndrome, and her typical boyfriend because when some of Becky’s friends questioned his motives for wanting to date her, he indignantly told them that (paraphrase) he liked her, plain and simple.

down syndrome prom date

What I see in these pictures is a beautiful young woman and a handsome young man who are about to have a great night. They look happy to be together and maybe a little anxious to dispense with the photo shoot and get on with the party. They look like they are proud to be chosen by each other for this special event.

When we make his choice to take her to the prom evidence of his extraordinary heroism, we diminish her. And we diminish all girls every time we tell them, in subtle and overt ways, that they are not complete unless they have a boyfriend, or unless their boyfriend gives them a corsage more elaborate than the other girls, or unless they get the most elaborate “promposal” of the year.

Hey, I’ve got a great idea! Let’s all agree to stop diminishing all girls – special needs or not…in any way…starting right now…Got it? Thanks!

So, he’s not a hero. But he is a handsome young fella who asked a beautiful gal to the prom. They are young people who have sustained a meaningful relationship since elementary school and who, I imagine, will continue to sustain their relationship for many years to come. And I bet that at their prom, they created memories they will both treasure for the rest of their lives.

And on a personal note, these two get my vote for the most adorable prom couple of the year!

Anna and Nathan, Prom 2015

Anna and Nathan, Prom 2015

 

My Mastectomy And A Note

Tomorrow morning at 6:00 a.m., I will check into UAB hospital for a preventative double mastectomy with reconstruction, a surgery that may take as long as ten hours. I’ve been quite anxious about this, dreading the pain and the interruption to my life. Of course, I’m grateful that I can do this before my inevitable breast cancer diagnosis and know that I’m lucky the BRCA gene mutation test allowed me to take matters into my own hands. Even with the greatest news of all…my daughter did not inherit the gene mutation and will never have to go through this process, I haven’t been a lot of fun to be around the past few weeks as the tension has built.

I was diagnosed with Crohn’s disease when I was 26 and have had a fair number of surgeries because of that…intestinal resections, gall bladder removal, a hysterectomy…and then both of my children were C-sections…with 8-inch vertical incisions up my belly. When I had my ovaries removed in October, they weren’t able to get to them using a laproscope so the same incision site was opened yet again. Then there was the back surgery I had three years ago when a disc ruptured and too many procedures under anesthesia to count, along with the cosmetic breast reduction surgery that was my 50th birthday gift to myself. If only I had known four years ago what I know now. The plastic surgeon who will operate on me tomorrow said it is actually to my advantage that I’ve had breast surgery before…things were lifted back where they used to be…which increases the chance that the nipple-sparing technique he uses will be successful. But still, I’ve been shaming myself over my vanity.

I’m a surgical veteran and know the drill…the pain, the helpless loss of control, the indignity of hospital stays. Basically, I know that I’m about to have a pretty wretched couple of weeks.

I’ve done my homework, read up on the BRCA mutation and my surgical options, have had repeated consultations with the breast and plastic surgeons who will be working on me tomorrow. I’ve followed hundreds of message threads from the multiple Facebook groups for previvors I’ve been invited to join since writing about my mastectomy decision. I’ve talked to my mother and friends who have had mastectomies. About three weeks ago, I decided I had taken in all the information I could…no more because I was tired of second-guessing and what-iffing.

I have wrapped up the hot button items on my “to do” list at Merrimack Hall, have delegated everything I can think of and have to admit, for a control freak like me, it’s sort of liberating to have no option but to turn loose of things. I’ve cleaned my house, paid the bills, tried to leave everything in an orderly manner…more for my benefit than anyone else’s. I bought mastectomy bras and button-front tops with pockets to hold drainage tubes. And through all the planning and preparation, I’ve had a knot the size of Texas in the pit of my stomach and a constant feeling of dread.

On my last afternoon in the office, I made a final sweep of my desk, with my teeth clinched and my nerves frayed. Just when I thought I would come unglued if I found one more thing I had neglected to do or delegate, I found this:

Chelsea's letter

My friend, Chelsie, made this for me and attached it to the holiday goodies she and her mom had given me for Christmas. I saved it because I intended to write a post about this note, one more thing I hadn’t done. I couldn’t have found her message at a better moment in my life.

If you need a slight translation, Chelsie wrote, “Be happy. You I love. Smile. Chelsie.

The pit in my stomach lifted a little bit. And I smiled. In Chelsie’s world, all you need to do to be happy is just to…be happy. Smile. That’s all it takes.

Chelsie…the adorable one in the middle!

Chelsie…the adorable one in the middle!

Chelsie has written me lots of letters and she always ends them the same way: Debra, you I love. Now, to some people, it may seem that Chelsie has her words backwards because the rest of us would say, “I love you, Debra.” But it occurs to me that when we say “I love you” to someone, that makes it all about us…”I” feel something about you and this sentiment has everything to do with “me” and actually nothing to do with you. The way Chelsie expresses her love makes it all about the other person. Debra…you I love.

So tomorrow, I will do something I don’t want to do and I will have a rough week. But I will try to smile because Chelsie told me to. I will be happy because Chelsie said I can. I will remember that Chelsie’s love for me isn’t about HER feelings. Her love is about ME. Chelsie…you I love, too.

How bout we all take Chelsie’s advice! Facing something tough and scary? Smile! Feeling down and defeated? Decide to be happy! If Chelsie can do it, so can we.

To everyone who is thinking of me and praying for a speedy recover, I thank you. Your support has given me courage. And to Chelsie and all of my friends at Merrimack Hall…YOU I love.

 

 

What Happened When A Radio Talk Show Host Used The “R” Word On Air

This post contains graphically offensive racial and ethnic slurs that are not a part of my vocabulary…I am using them to illustrate a point. I am deeply offended by the use of words that disparage or diminish any group of people.

Words…what power they have.

The words we choose to use can open a dialogue or shut one down; they can make a friend or an enemy; they can forge a bond or create a divide.

This morning, local radio station owner Michael St. John was hosting his daily morning talk show when he unintentionally ignited a firestorm by his repeated use of the “R” word. I didn’t hear it myself but one of the parents in my program did, and she called me. She was hurt and outraged. She said, “You are our voice…please speak for us” so I called the station to see if Mr. St. John would speak with me. We talked for nearly an hour and I think both of us came away feeling positive.

On-air, Michael relayed the story of two separate events that happened to him yesterday that involved two people with special needs, one who worked in a grocery store and the other at a fast food restaurant. In both instances, the person with special needs was unable to perform the job duties they had been assigned. In both instances, everyone involved had become frustrated – the people with special needs and the customers they were tasked with serving. Michael explained to me that he was trying to ask a general question…is there some sort of governmental mandate that is requiring businesses to hire people with special needs even if they aren’t qualified for the jobs?

I should mention here that Michael’s radio station is a conservative talk station, which helped me make sense of his “big government interference” theory. I should also mention that there is no governmental mandate to hire people with special needs and that I strongly encourage businesses to give jobs to people with special needs when they can. We have two employees with special needs who make valuable contributions to our organization each day.

In both of these instances, the person with special needs had difficulty making appropriate change for a purchase. Michael wondered why they were put in the position of operating the cash register if they weren’t skilled enough to do so, which is a valid question. Personally, I think the inability of some fast food workers to make change has more to do with our failing school system and our minimum wage than it does with having special needs but that’s a political ball of worms that I don’t care to open in my blog.

People didn’t hear Michael’s question or understand his point because all they heard was his choice of words…retardedretardretarded afflictions…and his repeated use of “them” and “those people.”

When I asked him about his use of these words, he was adamant in his intention that he used these words to describe the diagnosis of the person and did not mean to cast aspersions on them. And I was stunned to hear that Michael actually has a step-daughter with an intellectual disability. Turns out, Michael is not offended by the “R” word as a parent and did not seem to be aware that its use is no longer deemed appropriate.

I wondered how a person – especially one who has a family member with a disability – could be so oblivious to the fact that the “R” word is no longer acceptable but I reminded myself that he lives in a small community in North Alabama, which could explain a lot. Rednecks can be slow to catch onto trends.

Ouch…that stings because I, too am a redneck from North Alabama.

When I tried to explain to him that the “R” word is inflammatory and negative, he was a bit defensive in his stance that you can’t eliminate a word from the dictionary just because some people find it offensive.

Here is one thing Michael said to me (paraphrased):

People with retarded afflictions shouldn’t be put in jobs that don’t match their skill set.

So I asked him to substitute other offensive words in this sentence and see if he thought it would be acceptable to say them live on the radio, like this:

Faggots/niggers/chinks/kikes/dagos/wet backs/rag heads/crackers shouldn’t be put in jobs that don’t match their skill set.

I think a “lightbulb” went off for Michael.

The surprising thing was that the longer we talked, the more I liked Michael, even though I was primed to take his head off. He truly didn’t intend to offend people with special needs or their families. He truly intended to simply ask what he thinks is a valid question. He is truly grateful for the job his step-daughter has and knows that she takes pride in having a job she can do independently and well. He truly wants other people with special needs to have that same employment experience- he doesn’t want them to be placed in jobs that are inappropriate for them because he truly hated to see two people with special needs becoming frustrated when they were unable to be successful in their assigned tasks.

Michael said to me, “When a door slams in your face, a window will open and I think this happened today so that you and I would have this conversation.” He’s promised to issue an apology/clarification on air tomorrow and has invited me to be his guest on his show in September, an invitation I’m happy to accept.

I may not agree with his politics or enjoy conservative talk radio but he’s not a bad guy…he just made very poor word choices. I do the same thing every day when I drop “F” bombs around. There are certainly people who tune me out or become outraged with me because I say “fuck,” even if they agree with my message. So a lightbulb went off for me, too.

Although I’m sure I will continue to drop “F” bombs when I believe they are appropriate and while “fuck” may be offensive to some people, it is an adjective or a verb, not a noun used to disparage someone.

Which brings me back around to words and their power. We have advocacy groups telling us every day that certain words aren’t acceptable, from the NAACP to the LGBTQ. So I am adding my voice to the chorus of voices that are trying to tell our society that we are all more alike than we are different…and not just in matters of race, ethnicity or sexual preference.

It’s not okay to call anyone names, people.

People with special needs are people…they are not just a diagnosis or a stereotype. They are people with feelings and they deserve to be respected, by us and by our words.

The Secret about Parents of Kids with Special Needs

 

Alisa and Anna Chilton

Alisa and Anna

I follow a lot of blogs. One of my favorites is Special Needs Mom, by a gifted writer named Suzanne Perryman. She posted an entry on April 14, 2013, that pops back up in newsfeeds occassionally and during the past week, I’ve noticed that several of the moms of students in my program have reposted it. Click here to read the post.

As I re-read this post, I realized that I know a secret about parents of kids with special needs, a secret they won’t tell you because they probably don’t even realize it …

The secret is that parents whose kids have special needs are brave.

What else do you call a person who has faced their worst fear and emerged changed for the better? In the past seven years, I’ve met hundreds of parents and I’ve only encountered one who was bitter, a young mom who’s daughter has cerebral palsy and who told me that her daughter was too disabled … more disabled than any other child and couldn’t possibly be part of my program. The rest of the parents I’ve met are … well, they are just brave. And brave people rarely tout their bravery.

They didn’t start out that way.

They started out on the road to parenthood just like I did … with a vision that did not include hospitals, therapists, resource classrooms. They were a couple with a shared dream of creating that perfect family that we all want. Maybe they imagined their child would be a great athlete or a great artist or a great engineer. While they were expecting, they imagined all those life events their child would experience … playdates, school plays, college, a wedding. For some of them, that imagining came to a halt during pregnancy, for others the end of the dreams didn’t come until later.

But at some point, life said to the parents I know:

“Sorry, you don’t get that dream. You better get busy trying to imagine a different one.”

And so that’s what they did.

 

Connor and Brian Furber

Connor and Brian

 

They’ve taken the disappointment, the fear, the anger that they must have felt and have turned the other cheek. They refuse to let anything negative shape the rest of their lives or cast a shadow on the lives their children will have. They were dealt a blow that must have laid them flat on their backs, but they’ve gotten back up again, put a smile back on their faces and they’ve re-imagined the future without rancor and without regret.

There must be times when the heartbreak returns. Maybe a girlfriend tells them about her daughter, who made the cheerleading squad or maybe their buddy tells them about teaching his son to drive – and there it is … that pain, that regret, that feeling of, “Yeah, that’s what I thought I’d be doing.”

I think bravery is doing something, even when you don’t want to or are afraid and never allowing yourself to become resentful about it. Which is exactly what the parents I know do.

I’ve experienced a miniscule taste of what it might be like. Austin began to lose touch with his classmates around 9th grade and for the rest of his high school years, we were caught up in the drama of drug addiction. A few weeks ago, I ran into the mom of one of his kindergarten classmates and was startled when she told me that her daughter had graduated from college back in May.

“Wait a minute,” I thought to myself. “If Austin hadn’t spent six years using drugs, he’d be graduating from college now?” For a brief time, I let myself think about all that we missed … prom, high school graduation, fraternities and campus visits.

And as I thought about those lost dreams I’d had for Austin, I wondered if I would have turned out like that one parent I met who was bitter that her child had cerebral palsy or if I would have been brave enough to embrace an unexpected and uninvited path.

Once I said to a parent, “I don’t know how you do it,” not realizing that this would be offensive to her. Parenting her child was not some onerous task, some hardship she had to endure … parenting her child was a gift in life.

Was she like that to start with, before she knew her child would have a disability?

Or did having a child with a disability turn her into a resilient and brave woman who could accept that she was going to have to travel a road she never asked to travel?

 

Ben, Carly and Gina Bender

Ben, Carly and Gina

 

Some of the bravest parents I’ve met are ones whose adult children have disabilities … those parents who insisted on bringing their children home from the hospital back in the days when doctors told them not to.

One father told me that when his son was born, in 1960, the doctor said,

“Put him in an institution. You’ll visit him once a week at first, then every six weeks and before you know it, you’ll never even remember you had him.”

Those parents brought their children home when there were no resources, no therapists or early interventions, when their children were not even allowed to go to school. I know so many parents who have retired and still have their children living at home and imagine that they worry every single day about what will happen if their children outlive them. But that doesn’t stop them from fully embracing the path life placed them on, despite what they might have imagined one day so long ago.

All I know to say is … that’s what bravery looks like.

The next time you see a parent of child who has special needs, remember this secret they will never tell you … when you see them in the grocery store or at your school or at your church …

You are in the presence of a person who is truly brave.

And the next time you are disappointed in something or life hands you an unexpected twist, and take inspiration from their bravery.

You Too Important

Katie and Carolyn have worked at Merrimack Hall for two years. When a business hires a person with special needs, they gain so much more than just an employee. Here are some things that business owners might not know about hiring people with special needs:

  • most people with special needs would be happy with a part-time job, not full-time
  • in some cases, people with special needs can be paid less than minimum wage; in all cases, they would much prefer to have some income rather than no income
  • job coaches are available to help train and supervise people with special needs, if your business is not able to do this
  • organizations like The Phoenix Corporation can come into your business and identify ways you could create meaningful jobs for people with special needs
Katie and Emma

Katie and Emma

There are many intangible benefits to having people with special needs on your payroll, such as the diversity and unique perspective they can bring to the workplace. Here are two examples of how Katie has had a positive impact on me at work:

Katie wears an insulin pump and each day after lunch, she pricks her finger, calls her mother to report the number on her pump and adjusts her insulin dosage. Without fail, once she receives her insulin, Katie goes into the lobby to sing a song. It doesn’t matter what’s going on in the lobby…it probably wouldn’t matter if the building was on fire. Nothing interrupts what we’ve affectionately come to call Katie’s “Sugar Song.” For about 20 minutes, she sings at the top of her lungs about anything and everything, but most often, the Sugar Song is about herself. Her songs have no set rhythm or rhyme and typical lyrics might be:

I so beautiful.
I so happy.
I love my cat.
or
I a princess.
I wear pink.
I the best worker.

Katie and Rachel

Katie and Rachel

I decided to try a Sugar Song for myself a few weeks ago. I was tense, worried about a grant deadline and acting a bit testy. So, I grabbed a Snickers bar from the concession stand and after I ate it, I sang – at the top of my lungs. I don’t know if anyone heard me or not but, like Katie, I decided I didn’t care. My lyrics, sung to the tune of “You Are My Sunshine” were:

I am amazing.
I’m so amazing.
I’ll get this grant cause I’m the best.
My mission is the
Most compelling
My grant will blow away the rest.

And it worked! I felt less anxious when I finished my Sugar Song. And low and behold, last week I got an email notifying me that I had indeed received the grant – a $10,000 grant to establish a leadership development program for our volunteers. Sugar Songs are going to become a regular part of my day from now on.

The second example happened a few months ago. Katie was eating lunch by herself in our kitchen and I was on a frantic search for something – don’t remember what. I darted past the kitchen table about 5 times, going into people’s offices, out the back door and in again, up to the lobby and back. Each time I passed the table, Katie offered me a different greeting.

Hi, Boss Lady!
or
You look cute, Debra!

I responded with appropriate comments but never slowed down until finally, Katie stood up from her chair and said:

Hey! Slow down! 

Of course, I obeyed. Then Katie said:

Why you hurry so much? You think you too important.

Well, that put me in my place. Why was I hurrying? Katie never hurries or rushes and neither should I. When I’m on some self-important mission, I’m not doing anything but stressing myself out – and probably stressing out those around me at the same time. Katie was right…I’m just not that important and neither is anything I have to do that requires me to hurry so much that I can’t stop and engage in a polite conversation with my teammate. Thanks to Katie, I’m going to slow down…and sing a song every now and then.

Katie and Me

Katie and Me

If you’re interested in hiring someone with special needs, I’d love to hear from you! I would be happy to connect you with resources to facilitate the hiring of someone with special needs. I can also recommend any of the dozens of adults in my program who would be thrilled to have a part-time job and who would bring enormous benefit to your business.

A Brave Boy Named Bill

Me and Bill in January

Me and Bill in January

 

Last week, I mentioned a student who would miss our recital because he would be having surgery to remove a suspicious mass. The final diagnosis came today … that student, Bill, does have cancer but the doctors are sure they caught it early, say he only needs two rounds of chemo and are confident of a complete cure.

Hearing this news takes a little of the sting away … at least it will just be two treatments, at least he will recover completely. Thank you to all of you who reached out to me after the last post, expressing your support of our organization, our students, our volunteers and the families who have suffered tremendous losses this year.

I’ve been working on two other posts for this week – a recap of our gloriously amazing recital on Saturday afternoon and another on our “Next Step” in an attempt to improve special education in our community – and was feeling pressured to finish them because the week is getting away from me.

And then, Bill’s dad told me a story today that I asked his permission to share with you, so the other posts will have to wait because this story made everyone at Merrimack Hall smile and “ugly cry” at the same time.

Bill has been in Project UP for three years and is an exuberant, enthusiastic and fantastic dancer. He can shred a mean air guitar riff, is a great partner when you want to do the shag and has deftly portrayed characters as different as Huck Finn and Danny Zuko in productions and dance competitions. He is always smiling, has never met a stranger and a hug from Bill … well, a hug from Bill can make even the worst day suddenly become the best day ever.

Last fall, I asked the Project UP parents for their permission to do something that might be considered a little too “in your face.” Hayley and Melissa wanted the kids to do a dance to that great 80’s anthem by Twisted Sister, “We’re Not Gonna Take It.”

 

Project UP performing "We're Not Gonna Take It" at NRG Dance Project in Atlanta this fall

Project UP performing “We’re Not Gonna Take It” at NRG Dance Project in Atlanta this fall

 

In a brainstorming meeting, one of us – we can’t remember exactly who it was – came up with the idea of putting the kids in t-shirts with slogans about whatever their diagnosis is. We put it to a vote and the parents unanimously agreed with our idea. We found some of the slogans through a google search and parents suggested others … imagine 42 people, ranging in age from 13 to 35, sporting ‘80’s themed hair styles, headbands and leg warmers and proudly wearing fringed t-shirts that said:

You’d be happy too, if you had an extra chromosome.

I have an extra chromosome and I’m not afraid to use it.

Am I rocking this extra chromosome, or what?

The rainbow is also a spectrum.

I have autism and I am awesome.

Don’t dis my ability!

or my personal favorite…

Normal is a dryer setting.

The dance ends with a fierce air guitar solo by the guys, with the gals jamming behind them and on the final clash of the drums, all the dancers end in a pose with their right arms extended high in the air and their fingers in the universal symbol for “Rock on, dudes!”

Each time they performed this dance, audiences responded with a standing ovation, shouts of support and usually, a lot of tears. It’s become sort of our theme song now … yes, the folks in Project UP have disabilities but it doesn’t bother them … they’re not gonna take it anymore!

They’re not gonna take being discriminated against or left out or marginalized or bullied or made fun of or … you get the picture! The dance seemed to leave the dancers feeling more empowered each time they did it.

 

Bill and Haleigh after the NYCDA Competition performance in Nashville

Bill and Haleigh after the NYCDA Competition performance in Nashville

 

So, back to Bill and his surgery last Friday. His dad said that Bill became anxious during the pre-op procedures. The nurses that were prepping him for the surgery asked Bill if he had any favorite songs that they could all sing together to help him relax.

Bill’s parents explained the “We’re Not Gonna Take It” dance and as Bill laid on the gurney, everyone started singing it. Bill marked the dance moves as best he could … he’s a great dancer but it must have been hard to get his groove on when he was attached to monitors and IV’s and laying on his back … but he worked it out!

Once in the operating room, away from his loving parents, Bill got scared again … really scared. So, one nurse started singing, “We’re Not Gonna Take It” again. And then all the other nurses started singing too. And then the anesthesiologist joined in…and then the doctors joined in … and then other technicians in the room joined in until the entire operating room was singing.

 

 

Bill performing at the holiday show

Bill performing at the holiday show

 

And Bill relaxed. And as the anesthesia began to take effect, Bill raised his arm high in the air, fingers extended into the “Rock on, dude” position and he fell peacefully asleep.

Imagine that … an operating room full of focused and competent medical professionals who have specific protocols and stringent procedures to follow … singing Twisted Sister to a young man with Down syndrome. What compassion they showed for Bill by singing his favorite song to him.

And imagine Bill, scared and confused and alone but comforted by those doctors, nurses and technicians as they sang. Imagine how powerful Bill must have felt when he reached down deep into himself and called on his faith and his courage and his inner strength.

Imagine how he expressed his strength … by raising his arm in the air and saying, not with words but just with a gesture, “Bring it on … I can do this … I’m not afraid … rock on, dudes.”

Last week, I felt defeated by loss. Saturday’s recital left me newly inspired because of the accomplishments of our students. And today, I feel proud to know a young man named Bill, who conquered his fears … and who is going to kick cancer’s butt … because he is brave and strong and faithful.

Bill is a rock star and cancer … well, Bill’s not gonna take it!