Every December I make a month-by-month year-in-review update to tuck into the Christmas cards we send to all our friends and family this time of year. Today as I dropped a nice, big stack of holiday cards into the post office box, I thought it would be fun to start a new holiday tradition celebrating another year of working with alight. I hope you enjoy our first annual alight year-in-review photo gallery. Lots of people like to do retrospectives things like this during that first week of January, but I think the holiday season is all about taking time to reflect on where you’ve been and we’re you’re headed. So, this is where we’ve been this year. We hope you enjoy taking a glance back with us as we are already busy preparing for our first performance of the new year on January 21, 8pm and January 22, 4pm at Dance Place. See you soon?
After I recovered from the shock of being awarded the Kennedy Center funding for Speechless, I realized that I needed a dancer who could portray my cousin Taylor in the work. I had known from the moment I wrote the proposal that Monica Warren Schaeffer would dance the part of Bonnie, but Taylor was a mystery. A few days later, I was in rehearsal at Dance Place with Deborah Riley and watching Lucia dance when I realized she was perfect. I remember asking her to do the project, thinking, “I have no idea what I’ll do if she says no.” What a relief she said yes! Seeing Lucia meet Taylor after the Kennedy Center premiere, I was amazed to find that they are just about the same size which just made me smile. Over the past year, I have grown in my admiration of Lucia’s incredible maturity as a performer and her amazing child-like joy in just moving. And, here’s your chance to hear from Lucia herself:
What have you been up to since performing at the Kennedy Center?
I went home to Ecuador for two weeks which was amazing. I felt like I was able to recharge my battery for the cold weather ahead here. It was so good to spend time with my all my family and friends and my co-workers at the National Dance Company of Ecuador. I even took class there a couple times.
What was the most surprising thing you learned from the process of making Speechless?
Definitely learning about patience. I am so admiring of parents who seem to have such unconditional patience. I feel like I discovered a new level of patience seeing these families waiting for their child to develop ways of communicating and just adapting to that…it has just been so touching to see
and impressive really.
What was the most memorable part of the premiere of Speechless at the Kennedy Center?
The presence of Bonnie and Taylor before, during and after the show. Having them there created this unique atmosphere for Monica & . We were just very touched to meet them, and it made the whole thing seem so real…seeing the real story, the real thing we were representing, in front of us. And, after the second show, Bonnie told me she asked Taylor, “Where is Taylor on stage?” And, she pointed to me, very her recognize me as her in the story was very emotional for me.
What is your favorite part of Speechless as a performer?
Definitely the two duets with Monica. We are really connected, just the two of us. We just really put ourselves into those characters in the moment, and the connection between us is so strong during those two duets.
Lucia invites you to see her perform in Speechless at Dance Place (3225 8th St NE Washington D.C.) on Saturday, January 29 at 8pm and Sunday, January 30 at 4pm. For more information and/or to purchase tickets, visit www.danceplace.org or call 202.269.1600
For more about alight dance theater, check out our website at www.alightdancetheater.org or follow on Facebook & Twitter!
For months, my first coherent thought in morning has been about Speechless–thinking about my cousin Taylor who inspired the work, reminding myself to email the composer, getting an idea for how to solve a choreographic issue in the work…I’ve been thinking about, praying over and working on Speechless virtually everyday of the past year of my life. This is the reality of choosing to make a work of art; the act of creating anything shapes your life more than you shape it. Almost like a newborn, a work of art is completely dependent upon its creator for its development, and meeting those demands changes you.
Of course, as a choreographer, I don’t work in a studio alone. I depend upon a talented team of collaborators, especially the dancers, to bring a work like Speechless to fruition. Recently, alight dancer Michelle Cardoso sent me a link to this article: Devasting genetic disorder is taking a little angel. The piece focuses on the challenges families face caring for a terminally ill child, and the love it takes to overcome that kind of pain. Along with the article, Michelle said, “Speechless, and this article, made me think about the way we mark our achievements. Is it getting what we said we wanted? Or is it about getting through it and being happy?” These are good questions, the kind I’ve been asking myself throughout this process. She also reminded me that the work I chose to make impacts the lives of others as well.
Living with Speechless this year has reminded me that not everything in life can be planned and executed with the kind of certainty and precision I prefer. Just about everything about my cousin Taylor was unexpected and very little of her life has conformed to the “plan”, and yet she is a joy. Naturally, before she was born, we hoped for a “healthy” child, but now that we have Taylor we’re happy to get through the days, whatever they bring, grateful that she’s with us. Working on Speechless has forced me question my need for control. Being a make-it-happen kind of gal helps me get a lot of stuff accomplished like planning rehearsal schedules and writing funding proposals, but sometimes the process lacks joy because I am more focused on controlling on the possibilities than enjoying them.
When Monday comes, I will begin a new year of teaching–at Towson University and Greenbelt Community Center–and I will start focusing on creating a new work for alight. And, Monday will also mark the end of my year of Speechless. I hope we will perform the work again after this weekend, but soon I will need to devote most of my thought-life and planning time to the demands of creating a new work. Heading into this weekend, with our shows at Dance Place just ahead of us, part of me is a little sad to leave my year of Speechless behind…but also excited to see what comes next.
We want to know what makes you SPEECHLESS. Is it watching the sunset at the beach or stargazing at night? Or is it seeing someone pick their nose at the grocery store line? Tell us what you think!
To enter the drawing, first “like” our facebook page and then and tell us what makes you SPEECHLESS.
Your post will be entered into a random a drawing for a pair of tickets to alight dance theater Reprise: SPEECHLESS performance at Dance Place on Saturday, January 29 at 8pm or on Sunday, January 30 at 4pm (winner’s choice).
The winner will be announced of Facebook on Monday January 24th, 2010. The individual winner will be notified additionally by message.
This week I’ve been thinking a lot about expectations, about how powerful they can be, starting with the expectations of parents for their children. I’m not a parent myself, but, from the outside looking in, I have seen many friends experience becoming first-time parents. Those nine months of waiting and preparing for a child are full of expectation. That’s probably the genius of the most read pregnancy advice book ever: What To Expect When You’re Expecting. Just the title is brilliant. Simple but resonant with parents-to-be because that’s the constant state of a soon-to-be new parent–expecting, a combination of hope and anxiety.
In the clip above, Deborah Creek, a special education teacher and intervention specialist, talks about working with parents whose expectations for their children have been disappointed. In addition to serving the child, part of the job of special education professionals like Deborah is helping parents learn to nurture and support their child and manage that child’s special needs. As Deborah says, “The parents that are going to probably going to enjoy the process more are the parents who say she is what she is…” And, that’s true, not just for parents of special needs kids, but for all of us.
We all have expectations for ourselves, for our families, for our communities. And, those expectations shape us, for better or for worse. I’ve always struggled with perfectionism, the expectation that I can and should be able to accomplish tasks elegantly without falter or weakness. Not surprisingly, this expectation for myself is disappointed daily, if not hourly, by the reality of my own fragility and insufficiency. As a result, I often meet even small disappointments with anger and frustration, so working on the Speechless project has been humbling.
I keep thinking that we’d all probably enjoy “the process” of living, working and loving more if we could deal with disappointed expectations as gracefully as the parents I’ve interviewed for the this project. Myself included. What impresses me most about these families is the way they have learned to shape and re-shape their expectations as needed instead of being manipulated or paralyzed by their disappointments. This ability to shift their perspective and find joy where others see only loss is powerful. And, it makes me think that someone should write a new pregnancy advice book called: How to Expect the Unexpected.
I’ve been plugging away at editing all those hours of video footage, so I thought I’d share my first relatively successful but still very rough cut of the video prologue of Speechless. This clip features excerpts from interviews with three different families: Nancy & Christian Panarese; Michele, Anthony & Serena Bonanno; and Kristin, George & Cole Zuponeck.
As I was listening to each of their individual interviews, I started to hear echos of each of their stories in the others. Their experiences are unique. Each of their children have a different diagnosis. And yet, I was struck at the commonality in their search for answers to the question, “Is something wrong?” These families have never met, but I began to imagine them all sitting in the same room and really connecting with each other through their stories. I wanted to knit their their stories together in such a way that they seemed to be in dialogue with each other despite the fact that they were filmed separately.
This certainly isn’t a final, smooth edit, but I think it is moving in the right direction. For me, the structure of this edit brings their diverse voices together in way that emphasizes the unity of their experience: the uncertainty, the questions, their persistence. All of them have these moments when the doctors tell them everything is fine, but they’re not deterred. In their gut, they know something is wrong, so they keep looking for answers they know they probably don’t want to hear. And, all of them are tremendously honest about what that process was like for them as a family. It is an honesty that I have long recognized and admired in my cousin Taylor’s parents, Rick and Bonnie.
Last weekend I traveled out to West Caldwell, New Jersey to meet the Bonanno family. They graciously invited me into their home on a Sunday morning and took the time to share with me their experience of caring for their daughter, Serena, who was diagnosed with partial agenesis of the corpus callosum before she was a year old.
Serena is a happy, active seven year old girl with a very expressive face and beautiful auburn hair. She is just beginning to walk and uses a combination of sounds, signs and picture communication to express her needs. From the moment I met the Bonanno family, one thing was incredibly clear; Serena might struggle to learn to walk or talk but she’d never have to doubt how much she was loved. Her parents’ pride and joy in her was so clear it was almost palpable from the second I walked in their door.
In today’s clip, Serena’s parents, Anthony and Michele, describe the process of coming to understand and then accept their child’s special needs. After going through all the testing and arriving at Serena’s diagnosis, they had to grapple with the reality that there was no medical procedure or medication that could improve Serena’s condition. Her mother, Michele, describes grieving the loss and yet being awoken to a fuller perspective on life after receiving Serena’s diagnosis. Medically speaking, the only course of treatment for Serena was intense therapy and a lot of love, and, in her case, it seems to have been an incredibly effective prescription.
On Fridays, I usually post a clip from rehearsal, but today I just feel like doing something different. Last night in rehearsal, I was working with dancers Michelle Cardoso and Heather Cameron on duet section for Speechless, and we actually spent a good chunk of the time talking through the feelings, motivations and sense of character behind the movement. As we reviewed previously set duet material and added on new bits little by little, I ended up telling a lot of classic Taylor stories. And, they’re hilarious because Taylor always manages to surprise us.
So, in today’s post, I’m keeping it fun and ending the week with one of my all-time favorite Taylor stories: the day she executed her diabolical scheme to get out of school. Her mother, Bonnie, tells the story really well, so I don’t want to ruin it by saying too much, but I will preface the clip with one bit of information. Taylor struggles with some some pretty significant health issues. Consequently, when she uses her communication device (aka “her talker”) to tell us she doesn’t feel well, we always take that information very seriously. Like any self-respecting teenager, Taylor figures out how to use that to her advantage. No words necessary.
While I was in Chicago interviewing people for Speechless, I also captured some great candid moments at home with my family when no one realized the camera was actually recording. In the clip above, my cousin Taylor and her mother, Bonnie, are discovering all the possibilities of Taylor’s brand new thirty-two button communication device. Just home from school, Taylor quickly settled into her special spot on the couch with her new device and her mother at her side.
Within seconds, Taylor was laughing and smiling with practically every push of the buttons as her mother demonstrated how she would now be able “speak” in complete sentences. For the first time, Taylor has button that says, “I love you.” It is such a simple gift, but you can see the joy of this realization on the faces of both Taylor and her mother. I’ve watched this clip at least ten times, and it makes me smile and tear up a little every time.
These augmentative communication devices are practically portable miracles for the individuals and families who use them, but they are not cheap. Since only a handful of companies develop and manufacture these highly specialized devices, these “miracles” can carry a pretty hefty price tag. All of Taylor’s communication tools are relatively expensive with software programs running $500 or more and talk devices like this one selling for a $1000 and up. Some of the most sophisticated devices, like the DynaVox V which is basically a highly specialized computer, sell for more than $7000.
Between the medical bills and the cost of special equipment like talk devices and wheelchairs, giving a special needs child like Taylor all the very best tools to live to her full potential is a significant financial burden. Paying for all these things requires constant planning, submitting special grant applications and negotiating with school systems and insurance companies to secure funding. Dealing with all this stuff has been my aunt Bonnie’s full-time job almost since the day Taylor was born. But, of course, breakthrough moments like these, when Taylor suddenly has so many more options to express who she is and want she needs, make it all worth it.
As I am processing through the hours of interview footage from my Chicago trip, I am also preparing to head out of town again to travel to Kentucky to visit family and friends there. Before I finish packing up, I wanted to post one more clip from last week featuring my aunt Bonnie and uncle Rick telling the story of how Taylor took her first steps.
Most kids are “cruising” around the living room, clinging to furniture and bobbling around on their little legs, a little before or after their first birthday. Taylor was already in physical therapy at that age and hit her second birthday with no sign of being to walk independently. Rick and Bonnie had to be very patient and work diligently with her at home to help her develop the muscle control and neurological pathways that would lead to walking. For Taylor, no developmental milestone could be assumed; they were all carefully monitored, developed and facilitated by her parents in conjunction with a team of experts.
All new parents look forward to celebrating their child’s first steps, but I think it was particularly sweet for Rick and Bonnie because they waited so much longer for Taylor’s little legs to assert their independence. As a teenager, Taylor is still a bit unsteady on her feet a times, and we have to watch her very carefully on the stairs that lead up to her bedroom on the second floor of the house. But, while I was home, I saw Taylor walk down the driveway with her backpack slung over the shoulders and climb into her school bus all on her own, and it was one of the best things I’ve ever seen. It was good to see her taking some good first steps towards making her own special way in the world.