The Backstory of this Blog

Me with Laura Beth and Anna G

Me with Laura Beth and Anna G

As this blog has attracted more followers, I’ve been working on a draft of a post to explain the backstory of Merrimack Hall and The Johnny Stallings Arts Program. Thanks to the talented Anna Claire Vollers of The Huntsville Times, I can delete the draft from my documents…she has summarized events and captured the spirit of our organization and program better than I ever could. To hear about all the “why’s,” please read this:

LINK: In new blog, Merrimack founder Debra Jenkins opens up about tough subjects, gains huge following

Yep, That’s Me!

Me with the Project UP Girls (from left): Zahra, Carolyn, Eleanor, Anna G, Anna C)

Me with the Project UP Girls (from left): Zahra, Carolyn, Eleanor, Anna G, Anna C)

Thursday, I had a grand old time having my picture taken with some of my most amazing young friends. Katie Stapely shot these pictures outside in glorious 60 degree weather and I’m not sure what was more fun…having my friends give me hugs, listening to their conversations with each other or watching them ham it up for the camera.

The fun started with Anna G., not to be confused with her best friend, Anna C. (and referred to by all who love them as G and C, just to simplify things). When she arrived at Merrimack Hall for her Project UP class, we tried to hijack her but she was much more interested in opening the birthday party invitation Zahra had handed her.

“Come outside with me, G,” I said. “I want us to get our picture taken.”

“Debra,” she said, standing with one hand on her hip and looking at me with disdain, “I got letter to read.”

“But G, the sun won’t be out much longer.”

“You can wait.”

The end. You can wait. Opening that invitation was much more important than taking pictures with me…the same invitation that all the other girls were holding in their hands and the same invitation that everyone had already read…aloud…twice.

“G, please come outside. Zahra told you what that letter says when she handed it to you…it’s the invitation to her 14th birthday party at The Matrix. You can look at it when we’re done, can’t you?”

“Nope. Now.”

So much for that!

“I go outside with you, Debra,” said C. “I take picture with you…if no one else will.”

I was starting to feel like a big loser.

“I read letter already.”

Sure, C would take a picture with me…she had already read the invitation!

Me with Laura Beth and Anna G

Me with Laura Beth and Anna G

Several moms were standing around and they helped corral several girls outside for the picture. We sat on a bench behind Merrimack Hall, with G sitting directly to my left…quite deliberately taking her time reading the invitation. When G says she’s going to do something, there’s not much that can stop her and she was determined to open that envelope and read her copy of the birthday invitation. Katie shot candids while we waited for G to finish reading and then waited for her to carefully return the invitation to its envelope and even more carefully insert the envelope into her purse. This took about 10 minutes but there’s no such thing as making G hurry.

Eventually, everyone got into the spirit of the photo shoot. The moms stood behind Katie, making sure everyone smiled, the girls were giggling as we arranged and rearranged ourselves and as more girls arrived for class, the group in the photo grew larger.

Robyn was the last to arrive and when we called her over to join in the photo shoot, she took one look at me and said,

“What happened to your hair?”

“Yeah,” answered Anna Ryane, “I was gonna tell you that your hair looks kind of weird!”

That’s when I knew I was a loser. Emma told me last week that I look younger when I wear my hair in a ponytail so, being the vain old woman that I am, I wore my hair in a ponytail for the pictures. I guess I got a little carried away with myself because the ponytail was sort of high on my head. Oh yeah, and I curled it with a curling iron. And I might have teased it up a little bit. I didn’t look younger, I just looked weird.

As we posed for the pictures, the girls talked about Zahra’s birthday party, about the medal Caroline won in the Special Olympics last weekend, about Eleanor’s social studies test. They smiled and laughed, hugged on me and on each other and squealed with delight when Katie showed us the images in her camera. They were excited to see their images in the camera and Laura Beth straight up said, “Hey, I look good!” Yes, girl, you did look good! And my hair did look ridiculous.

Zack, me and Bill

Zach, me and Bill

Bill and Zach were scheduled for the second photo shoot and we nabbed them before they entered the building, as it was getting darker. Kayla carpooled with Zach today, so she and Zach’s mom walked around back with us to watch the boys as they did their best hip-hop poses, flexed their muscles and made tough guy faces. We were almost out of daylight when Kayla, who had stood patiently with a grin on her face, asked,

“Take my picture?”

“Yes, Kayla, please take a picture with me,” I said.

Katie took a few shots and held out the camera so Kayla could see the image. It was a darling picture of her and when Kayla saw it, she looked closely at the camera and then looked up at Katie with a huge smile on her face.

“Yep,” she said. “That’s me!”

Me and Kayla

Me and Kayla

Katie and I laughed at Kayla’s comment but when I thought about it later, I got a lump in my throat. It seemed to me that Kayla was validating herself, that she was saying to herself, “I’m here and I matter.” Maybe I read too much into it – maybe she was just confirming that Katie had, in fact, captured an image of her. But it sounded like more than that to me…Kayla was proud of that image in the camera and is proud to be the girl who smiled back at her. Me and my vain self was looking at the images noticing my weird hair, my wrinkles, worrying about what others would see when they looked at the picture. Not Kayla – she was simply confirming out loud something that she knows in her heart – that she’s Kayla and she’s terrific, inside and out. I won’t look at a picture of myself the same way again.

The Parking Lot is Full

Our classes are held Mondays through Thursdays until 6:30 every week. It’s been a long time since I’ve left the building while classes are going on – I’m either working from home, out of the office for meetings or don’t leave until after classes have ended. Yesterday, I happened to leave the office right at 5:00 and when I walked to the side parking lot where my car was, I was stunned to see that the parking lot was full … and even more stunned to pull through the back alley and see that the opposite parking lot was nearly full!

photo (42)

What the …? I thought. Is there something going on that I don’t know about? Why in the world are there so many cars here when it’s only a normal Thursday? I’ve never seen the lots full except when we’re presenting a professional touring production and for a moment, I couldn’t register why all those cars were there and then I remembered…our little program has grown up quite a bit.

When I walked outside yesterday, there were two dance classes, one visual art class and one adult day habilitation program going on at the same time. I know how many students that equates to – 59 people ages 3 to 60 were in the building, along with probably 40 volunteers – but I guess I didn’t realize exactly how many people that was until I saw all those cars.

For a few blocks, I allowed myself to gloat just a little, which went something like this: All those cars are in the parking lot because I got a brilliant idea while I was cooking spaghetti one night! The cars are there because Alan had the idea to create a new organization in the first place! The cars are there because we built it and they came!

Then honesty trumped ego when I recognized that the parking lots aren’t full because of Alan and me. They are full because of the arts. Those cars are there because almost everyone has an innate desire to express themselves through the arts. Whether you are “typical” or “special” doesn’t matter – people have been dancing around fires, singing and beating drums, painting and writing on cave walls for as long as there have been humans. Before The Johnny Stallings Arts Program started in 2008, there wasn’t anywhere in my community that people with special needs could go to participate in the arts (I’ll share my outrage at that fact in another blog post!) so it shouldn’t be surprising that five-and-a-half years later, the parking lot is full. The arts did it, not us.

If you don’t know the story of how Alan and I got the idea to donate the money to start a non-profit and what led me to create The Johnny Stallings Arts Program, my next post will fill in the blanks. In the meantime, I’m wondering … if we built another parking lot, how long would it take to fill that one up?

David & Goliath, Project UP Style

 

Nathan at the NRG Competition

Nathan at the NRG Competition

I recently finished reading Malcolm Gladwell’s “David and Goliath: Underdogs, Misfits, and The Art of Battling Giants,” a fascinating book about turning disadvantages into advantages. The book made me think about my students, who are perennial underdogs in most every situation in their lives. The kids in my program are disadvantaged by cognitive, physical or communicative disabilities that slow down their progress in comparison with people who experience “normal” development. We’ve repeatedly put our students in “David and Goliath” situations and regardless of their disadvantages, they come out on top every single time.

Like two weeks ago, when we travelled to Atlanta for the NRG Dance Project’s regional dance competition…over 200 trained dancers ranging in age from 8 to 18, all typically developing and all extremely talented, converged at the Westin Hotel for a weekend of intense master classes and fierce competition. There were 15 of Project UP’s 43 members who made the trip, arriving at the hotel full of excitement and oblivious to the fact that the odds say they didn’t stand a chance of competing successfully with their contemporaries. These are kids who are left out of so many things…just being included is a victory. Don’t get me wrong…if my students know there’s a trophy or a prize involved, they certainly want to win it but winning the trophy is just icing on the cake. They are excited about the process, not the end result.

As we’ve done in the past, we enrolled our students – all at least 14-years-old – in the junior age division with kids ages 8-12, where we thought they would stand a better chance of keeping up with the choreography. Based on previous experience, we knew there would be some raised eyebrows when they walked into their first master class…typical kids in the world of elite competitive dance aren’t used to seeing kids with special needs in their classes, so we decided to meet those eyebrows head on this time. The kids all wore t-shirts to class that had different slogans on them depending on what each kid’s diagnosis is. The slogans were: You’d be happy too, if you had an extra chromosome; I have an extra chromosome and I’m not afraid to use it; The rainbow is also a spectrum; I have autism and I’m awesome; Am I rocking this extra chromosome, or what?; and my personal favorite, “Normal is a dryer setting.” We put their disadvantages out in front, in your face and acknowledged the obvious right off the bat. My staff and I wore t-shirts that said either “Typical,” “Average,” “Same,” “Ordinary,” or “Regular.” The shirts were a smashing success; people stopped all of us all weekend to tell us how much they loved them.

NRG Performance of "We're Not Gonna Take It"

NRG Performance of “We’re Not Gonna Take It”

 

So, having disarmed everyone with the shirts, the kids set about participating in master classes and the competition. And boy did they ever kill it! While they may not have mastered every combination or understood every instruction, they never stopped trying. At the end of their hip-hop class, they were all flushed and sweating after an hour of hard-hitting choreography. Their typical peers high-fived them, congratulated them, encouraged them and applauded them for their efforts, with Project UP quickly becoming the center of attention everywhere they went.

Project UP blew it out of the water at the actual competition…they executed their dances with enthusiasm and won over the audience with their wide-open performances. While their typical peers may have struggled with nerves, the pressure to perform well and win, and with the backstage chaos that could unhinge even the most seasoned pro, the kids in Project UP were calm, cool and collected. They took the stage, did their job and returned to the audience to cheer on their competition. Of course, both of their performances received sustained standing ovations and most of the audience had tears in their eyes as they applauded. When people see a real “David” in action, going after dreams that appear unattainable, they never fail to be moved.

Anna C & Laura Beth at competition

Anna C & Laura Beth at competition

Both of Project UP’s dances received platinum awards – the highest score awarded to a dance. The final three awards were called the “High Impact Awards” and were given for outstanding overall performance. And wouldn’t you know it? Our “Davids” won a High Impact Award! Before presenting the award, NRG Dance Project Founder Nick Gonzalez told the audience, “Our next High Impact Award is going to a group that has inspired all of us this weekend.” Yes, our students are inspirational…and so are all the other “Davids” in the world. Our kids did what underdogs have done for centuries…they refused to allow their disadvantages to stop them for going for their dreams.

There was a great deal of celebration, lots of hugs, tears of pride from the parents and our staff but as soon as the excitement died down a bit, our kids were ready to pack it in for the night. Great sports that they are, our kids wanted to rest up for the next day’s classes and had no interest in gloating in over their win. I took the staff out to dinner afterwards and I have to admit…we did gloat over the kids’ victory! We toasted the kids, we toasted each other, we toasted the judges for recognizing the power of our underdogs’ performance and we toasted the audience for embracing our underdogs (yes, we had quite a few celebratory drinks with which to toast!). We all felt quite full of ourselves because we are just so dang proud of our students and so proud that our program has given them a platform from which they can show the world that they can do anything they are given the chance to try.

Dinner at the NRG dance competition

Dinner at the NRG dance competition

Like “Davids” usually do, our students were back in class the following Tuesday, hard at work preparing for their next performance. Besides making sure that we had properly – and prominently – displayed the High Impact Award banner they were given, the kids were back to business, their victory just another fun memory to them. As they continue to have successful public performances, the odds will tip in their favor – they will always be underdogs but they will narrow the gap between them and their typical peers. As they continue to succeed on an even playing field with their “normal” peers, folks will begin to realize that normal, well you know…normal is a dryer setting.

Warning: Thoughts on Labels

Atlanta Cami and money

Cami handing me the $2 she caught & donated to Merrimack Hall

Labels. They are everywhere we look…on our food, on our medicines, on our clothing. Labels are descriptive, informative, sometimes even life-saving but they are also limiting and narrow. They can help us navigate the world and they can help us make informed choices but labels also prevent us from forming our own opinions and being open to new things. When labels are assigned to people, they can predispose us to judgment and can prevent us from seeing someone for who they really are.

The students in my visual and performing arts programs have to live with labels that are assigned to them by our society…relatively innocuous ones like different, disabled or developmentally delayed and offensive ones like retarded, odd or weird. These labels are based on the diagnosis they’ve been given. Roughly 20% of the US population has special needs and for them, a diagnosis is a useful thing to have – a diagnosis gives them access to services that improve their lives, can prepare organizations like mine to meet their needs and can help educators assess them for appropriate placements. But the labels that accompany the diagnoses are never useful.

Our society claims to celebrate diversity, to embrace the differences between us and yet we rely on labels to categorize, stereotype and pigeon-hole each other. I want to know why. Is it just convenient? Does it make it simpler for us to avoid people or things that might make us uncomfortable? Do we label folks so we can decide who to let in and who to exclude from our lives?

I’ve had to learn a lot of acronyms over the past six years like PDDNOS – pervasive developmental delay not otherwise specified. This is a mouthful that basically means that a person is not developing at the rate of his or her typical peers and their symptoms don’t match up to any existing diagnosis. Some of my students don’t even have this diagnosis – some just don’t learn or develop the way most of us do and there’s no way to explain why. Not having a diagnosis presents its own challenges to my students and their families. Even one as vague as PDDNOS is better than no diagnosis at all.

Cami performing at our 2013 holiday showcase.

Cami performing at our 2013 holiday showcase.

Take Cami, for example. Cami is 14-years-old and has been with JSAP for five years. She attends an alternative school where she is in a classroom equivalent to a 5th or 6th grade class in a typical school. There is no medical explanation for the delays in Cami’s development so, like a lot of people, she falls into a category that’s basically like, “We don’t know what’s wrong, we just know that something is.” In the absence of a diagnosis, the labels kick in on overdrive.

I could use a lot of labels to describe Cami that tell you a lot about who she is – teenager; female; brunette; visual artist; stage performer. I can’t even let myself think of the negative labels that some people might use to describe or categorize Cami. I thought I knew Cami pretty well but last weekend I discovered something about her that I didn’t know – something that has given me a new, better label for Cami. Cami is a philanthropist.

Cami and her teammates in Project UP were in Atlanta at the NRG Dance Project Competition. During the awards ceremony at the end of the evening, NRG founders Nick Gonzalez and Rustin Matthew announced that they were about to do something unprecedented and exciting. The 200+ dancers who were sitting on the stage leaned forward in anticipation, holding their breath to hear what this great thing would be. Nick and Rustin told the kids to look to the ceiling and count down from five. After everyone counted down “5, 4, 3, 2, 1,” 2,000 $1 bills floated down from the ceiling! As it rained money on them, the dancers reached for as many bills as they could grab. No one was too aggressive about it but it was clear that all 200 kids on that stage sure did want to catch some of that free money.

When the competition was over and the last award had been handed out, Cami found her way to me, holding out two $1 bills and smiling sweetly.

“Wow,” I said. “Congratulations, Cami! I’m so excited for you that you caught two dollars!”

“I caught it for you,” Cami answered.

“For me?”

“Yes ma’am. I wanted to catch some money for you to put in the donation box at Merrimack Hall.”

Knowing Cami the way I do, I know it took a lot of guts for her to join in the fray and attempt to catch those dollars. I’m sure she was overwhelmed by the noise, the crowd, the other kids who were grabbing for the same prize she was. Other kids were probably trying to catch the money because it was fun, or because they are competitive, or because they wanted to buy a frappe at Starbucks. Not Cami…she wanted to catch some money so she could give it to me to use at Merrimack Hall.

According to Webster’s, a philanthropist is “a person who seeks to promote the welfare of others, especially by the generous donation of money to good causes.” That label fits Cami – and many of her teammates who have asked for donations to our program in lieu of birthday gifts – much better than of the other labels she has been given. Until we get to the point where we actually do celebrate our differences, wouldn’t it be nice if the labels we gave to each other described who we are on the inside instead of what color our skin is or where we worship or what our sexual preference is or what we can or can’t do?

The people with special needs that I know live with labels that predispose others to judge their abilities before they ever have a chance to show someone who they are. In an effort to provide services, mainstream and include, our society tells us right off the bat that a person with a disability is different from the norm – physically disabled or developmentally disabled are the first labels my students are given and those labels follow them for the rest of their lives, everywhere they go and in everything they do. It didn’t take me long to realize that none of these labels is accurate and if you spend a little time around people with special needs you’ll realize it too. Once you start thinking about the negative nature of labels for one group of people, you’ll find yourself noticing the negative nature of labels for any group of people.

Labels on people should come with their own warning label, something like, “WARNING – this label is not adequate to describe the person it is being assigned to and is possibly being used to facilitate exclusion, bias and discrimination.” If a label carries with it a negative connotation, we should mark that label “expired.”

Missing Darby

Darby in 2010

Darby in 2010

It’s been 95 days since Darby passed away. In some ways, it feels much longer than that and in other ways it seems like yesterday. I still expect to see her every Tuesday, smiling as she sings and dances with her friends. Every Monday in our creative writing class, I wonder what Darby would add to our story, remembering how much she loved to write and tell stories. Her name is still listed on our class rosters, her pictures are everywhere at Merrimack Hall and we have her name emblazoned on the wall in the dance studio…The Darby Jones Dance Studio. She is with us every day and yet she is gone…a 14-year-old girl whose life hadn’t even started…and she’s gone.

When we were preparing for her funeral, her mother, Valerie, wanted us to find a way to display Darby’s “Beads of Courage,” an impressive collection of beaded necklaces that the folks at Children’s Hospital in Birmingham helped her make. Each bead on the multiple necklaces Darby made represent a procedure…a spinal tap, a blood transfusion, a surgery, a chemo treatment. Literally hundreds of beads that stand for the hundreds of intrusive medical interventions she had to endure are strung together in at least 10 individual necklaces, each one long enough to wrap around Darby’s neck several times and still hang to her waist. She was proud of her Beads of Courage and loved explaining what each of the beads stood for, especially the beads with a picture of a face on them that have wiry curls sticking up…these beads were for the times Darby lost her hair during chemo. We covered heavy foam board with blue velvet fabric and used floral pins with pearls on the tops of them to hold the necklaces in place. At Darby’s visitation the night before her funeral, they were displayed beside her coffin on brass easels, uplit with small lights we brought from the theatre. After the visitation, we carefully loaded them into my car so that we could set them up at the funeral service.

As Sanders and I were preparing to leave my house for the funeral, we had to put a few more things into the back of my car and in the process, I broke one of the strands of beads. Beads rolled everywhere…all across the floor of my garage and into every nook and cranny of my car. We frantically chased them down, stuffing them into our pockets as we found them. We waited until we arrived at the church to assess the damage and were horrified to realize that we had lost one of the beads. We searched my car high and low but couldn’t find it anywhere.

While I worked with the florist to set up the sanctuary, Sanders drove to three different craft stores before she finally found the same string used for the necklaces so she could re-string them. Back at the church, I hid Sanders behind the large video screen we brought in and told her to restring that necklace as fast as she could before anyone else could realize I had broken it. I knew I would eventually tell Valerie that I had broken the necklace and lost a bead but I didn’t want her to know on the day of the funeral.

Sanders got the necklace restrung, working off of a photo we had taken at the visitation to get the order correct and no one was the wiser that day. A few days after the funeral, I was loading groceries in the back of my car and found the missing bead…in a place I had looked twenty times before. There it was, a simple red acrylic bead that stood for a blood transfusion. How could I have overlooked it when we tore my car apart trying to find it?

The day I found it, I had been feeling down and sad, replaying the funeral in my head. While the service was beautiful and comforting, it was as heartbreaking as you could imagine…there is something very wrong about a funeral for a child. I kept choking up that morning, remembering the tears that streamed down Anna C.’s face as Darby’s parents walked in the church behind the coffin. And then there it was – a little red bead – and I could feel Darby with me. I carry that bead in the change compartment of my wallet where I see it every day.

Darby and her mother Valerie at her final performance with Project UP, at the hospital.

Darby and her mother Valerie at her final performance with Project UP, at the hospital.

I will never understand why Darby had to leave us so soon. I believe that everything happens for a reason but for the life of me, I can’t imagine what reason there is for ending the life of a child. I’ve caught myself getting mad at God when I see a story in the news about some horrible criminal, thinking, “If God had to take someone on October 28, 2013, why couldn’t He have taken that wretched person instead of Darby,” as if God uses some sort of quota system to determine how many people should die each day. I’m sure it doesn’t work like that but it rankles me to think of all the people on this earth who are here doing evil things while Darby’s chance at a long life is gone.

When I told her about breaking the necklace, Valerie laughed at the image of Sanders and me scrambling all over my garage and car, hiding behind video screens to surreptitiously fixing the broken strand. I told her that I’d found the missing bead and offered it back to her but she wanted me to keep it. I’m grateful for that, I find comfort in knowing that bead is with me all the time. The bead used to represent a procedure that Darby endured but now, it represents her…her courage, her optimism, her beauty. Knowing Darby was one of the greatest blessings of my life and I wasn’t ready to lose her…neither were the hundreds of other people who loved her. I’m trying to live like she did – in the moment, with joy, with complete abandon – but I could have used a few more years of her influence to get it right.

On Having Special Needs

Abbey & me at NRG Dance Project in Atlanta

Abbey & me at NRG Dance Project in Atlanta

“Everybody has special needs, and we all have two special needs in common.  We all need to be loved, and we all need to be accepted. Some people’s special needs are on the outside, like mine, and some people’s are on the inside.”

– Abbey, age 14, who has cerebral palsy