These Dancers Shook Up All Our Ideas About What Kids With Special Needs Have To Offer
In Studio One at the National Dance Institute (NDI) in Harlem, New York, it is the dancers' first day together. They are still nervously getting to know each other when the piano kicks in with a cheerful take on "You're The One That I Want." Clustered in groups of twos and threes, the dancers try out pieces of choreography. Several of the dancers in the studio, including 13-year-old Josie and middle-schooler Amadeus, have hair streaked with neon pink, magenta, and green; little touches of flair, a sneak peek at the performer within.
A dancer in the front, Shira, has caught my eye with her broad smile. I can't help but smile back, laugh with her. I press my hands together in front of my mouth, and, suddenly, feel tears welling up in my eyes. Laurie, the mom of the dancer who goes by “Ava Flava,” slides a few seats over, and says, “You’re going to be laughing and weeping all week. They should warn the new parents.”
Shira’s dance partners Amadeus and Laylean turn Shira and her wheelchair around in a fast circle, prompting all of them, most notably Shira, to burst into laughter again. From Shira, Amadeus, and Laylean, my eyes shift across the room to my own daughter, sitting at attention in her tiny wheelchair, hands drawn anxiously into her chest, head tilted. She is there between her own dance partners, a physical therapy (PT) student named Jenn and a tall, young dancer named Sarafina. It is hard for me to not swoop over to my daughter — I am rarely this far away from her, rarely not acting as her mediator with the world. But I know that this is part of why I brought Esmé here, part of why all of these parents brought their children here to the DREAM Project: to give them the freedom to connect with their peers, to dance, to strive for excellence on their own terms.
The DREAM Project is an inclusive program that pairs dancers with disabilities with age-matched, able-bodied, neurotypical peers. DREAM — which stands for Dancers Realize Excellence through Arts and Movement — was co-founded several years ago by NDI Associate Artistic Director Kay Gayner and pediatric physical therapist Agnes McConlogue Ferro. Together they built a program that allows dancers to co-create a performance showcasing all the dancers’ abilities and accomplishments. Thanks to funding from the William R. Kenan, Jr. Charitable Trust, there are two free week-long sessions per year — two weeks that dancers can work toward a performance, and enjoy the flush of their achievement — but the results of this project stretch far beyond the final moments on stage under the lights. It was not easy for us to make it to the workshop, but attending certainly meant a lot to my daughter Esmé, whose opportunities for recreational programs are extremely limited. To that point, the DREAM Project makes a powerful argument that inclusion is not only of critical value for children with special needs, but also for typically developing children.
In 2015, 95 percent of children served under the Individuals with Disabilities Education Act attended general population schools, per data from the National Center for Education Statistics. However, only 16 percent of students with intellectual disabilities and 13 percent of students with multiple disabilities spent most of the school day in general classes. True inclusion and integration of children with and without special needs is still outside of how we structure education and, by extension, our communities. As a result, children with special needs lack access to the wide variety of programming that other children enjoy. And — also importantly — typically developing children are also losing out on opportunities to understand and navigate diversity.
The DREAM Project showcased just what they are missing out on.
There are 40 dancers taking part in the program this year, and there seem to be almost as many adults in the room — including physical therapy students and dance instructors — working with the kids. Close to half of the children in the program have disabilities that range from behavioral challenges, to intellectual disabilities, to visual impairment, to physical disabilities that afford them the use of wheelchairs.
A dancing partnership is built around each of these children, with one or two age-matched dance partners.
Running the vision for the workshop are DREAM Project co-founders, Kay and Agnes, who must constantly respond to all of the needs of the children in the room, which are varied. Agnes typically moves through the crowd of dancers as they plié, turn, and strike superhero poses, helping with positioning, individual choreography, and bonding between partners. Kay is most often found in the front of the room calling out detailed instructions to dancers in response to everything from behavioral outbursts, to playing to the audience, to timing of specific motions and all of their various translations.
They are working together, co-creating the choreography and working it out, [and] they fall in love with each other.
Meanwhile the dancers all get to work choreographing within their partnerships, creating movements that work for them as a team. The children try out movements, checking in with each other about how, for example, a spin made by a dancer in a motorized wheelchair might interact with her ambulatory partner's leap.
As Kay tells Romper, “They are working together, co-creating the choreography and working it out, [and] they fall in love with each other.”
“We are hard on them. It is part of the NDI philosophy to demand excellence, and in this context excellence means a different thing for every single dancer in the room,” Kay says.
Watching Kay and Agnes work reminds me of a dance in itself, as they suss out all of the pieces, large and small, to make the whole thing work as a unit, while being responsive to individuals with very different skill sets. Agnes says they approach each dancer in the program in the same way: “Whatever you have, we are going to augment that in the choreography — every single day here — and celebrate it.”
This approach is evident in the care with which the choreography of one of the group’s most experienced dancers, Alexa, who dances with her eyes and eyebrows, is highlighted. Every partner she works with appears to pick up on the timing of her eyebrow dancing, adding another dimension to the rhythmic expression of the entire troop's choreography.
Thirteen-year-old Josie is attending DREAM as a dancer for the first time. She explains that as a motorized wheelchair user, "It is fun to translate different motions, because you get to do it your own way. You’re still following what they’re doing, but you get to do it in your own variation.”
On one diagonal, Josie glides out across the floor, kicking her feet in time as her dance partners leap beside her. The three dancers temper their speed and energy to each other's movement, but each one plays in a different height, creating dynamic shapes in space.
Josie’s mom, Jacqueline, tells me that she has to plan carefully for their arrival home after dancing so Josie will be able to rest immediately, because she is exhausted. Jacquline is careful to qualify this, “But not exhausted in a way that she doesn’t want to come back! She’s ready to come back again [every day].”
Due to Josie’s diagnosis of Osteogenesis Imperfecta (OI), also known as Brittle Bone Disease, her dance partners cannot touch her as they dance. So, in addition to using eye contact and expressive motions toward each other, they connect using Josie’s chair.
“I tell people... to stand on the back of my chair and hold on to the handles," says Josie, whose shimmy, I note, is enviable. "And they can sit on the back where there’s a ledge.”
This connection is continued off stage: midway through the week it is not unusual to find Josie speeding down the hallway with her partner standing tall on the back of the chair. Josie loves being able to share her chair with her partner in this way. “I like that, because it feels fun, because I get to control my chair. And when someone is on it I get to control where we’re going so it is really, really fun.”
Sharing access to adaptive equipment can look and be fun. However, because adaptive equipment provides personal mobility and functions as an extension of a person's body, doing so is a deeply personal choice. The reality and implications of this choice are clearly respected by all of the adults in the room, who make sure that everyone is comfortable and consenting to sharing in this way.
Just as any dance partnership might involve touching and lifting in ways that are intimate, these partnerships thrive on trust and communication about what works for each partner.
This can be complicated, as several children taking part in the project, including my daughter Esmé and Shira, the girl who made me laugh and cry all at once, are non-verbal. Their ability to engage in choreography and to take part in the dance activities requires careful partnering with individuals who can become attuned to the ways that they communicate non-verbally.
I looked up, and Corinne was covering not her own ears but her partner Avery’s because Avery [cannot] reach her own ears. She was asking if Avery [was] OK.
"On the part of children like Amadeus, Sarafina [and others], there is this natural instinct of 'I get you' even if the child is non-verbal [that] has really blown me away,” says Agnes.
And it has blown me away too.
As the mother of a non-verbal child, I understand just how difficult it is to teach others how to respond to the seemingly small physical cues that my daughter uses to communicate: A tap on an outstretched hand, a tiny nod of her head, a teasing head shake. However, somehow, in dancing together, these students have all become keyed into each other’s expressions and needs beyond words. And through watching the care and respect with which they treat and teach each other, I was able to let go as my daughter would disappear during breaks with her friends.
Even more astounding, the other children were able to learn to understand when Esmé needed to come back to me before she became upset. It is a truly impressive thing to watch a group of children learn each other and learn to care for each other in this way.
The ability of partners to compassionately respond to each other off the dance floor was shown on the last day of the program, when, in the last hour of rehearsal before the performance, a fire alarm went off.
Agnes says she will never forget how the children reacted.
“I looked up, and Corinne was covering not her own ears but her partner Avery’s because Avery [cannot] reach her own ears. She was asking if Avery [was] OK, and when I called out to Corinne to see if she needed help, she looked at me and smiled and said they were fine.
“It reaffirmed that this little program is so much more than a dance class," Agnes says. "I think the impact of this program is much more than we even realize.”
As Agnes is careful to point out, the gifts from these connections do not flow in one direction. And sometimes epiphanies can come as a surprise. She spoke about being in an assessment with two dancers with disabilities, Shira and Allan.
“I had Shira out of her wheelchair and was going to stand up with her, but she was looking down.” Agnes asked Allan to hold Shira’s hands and say, "Shira, lift your head up" and he did so.
Next, “[Shira] lifted her head up, and [Allan] was smiling. And then she put her head back down. No prompting for that young man, [again he said] 'Shira lift your head.' And her head came back up again."
Allan had learned how to use his skill to help Shira with hers, Agnes explains. "So now it’s, 'This is my ability, let me help you with your ability'… no matter what.”
Allan, a repeat dancer at DREAM, meanwhile, has surprised Kay and Agnes by being able to dance independently, jumping across the floor with peer dancers who have had multiple years of training at NDI.
“We didn’t know he could jump. Six months ago, I’m not sure he could have jumped.”
Kay says that by keeping a high bar, the dancers step up “as partnerships, but also as individuals. And it is incredibly moving to me to see them all do that. And [for] them to see each other do that too."
Learning alongside each other, "it changes the way they look at themselves and it changes the way they look at people around them.”
So often, children with disabilities are treated as though their successes are not their own, but rather those of the people who support them.
Jerron Herman, a professional dancer with the Heidi Latsky Dance Company and NDI dance teacher, came into one rehearsal during the week to speak to the children about being a professional dancer with a disability. Herman, who has a form of cerebral palsy called hemiplegia (meaning that it only affects one side of his body) has spoken about how the imbalance of strength in his body has informed his dance, giving him, for example, a beautiful arabesque.
“I began in dance because I was invited and it's a reminder that others can see extraordinary things in you,” he tells me.
When he spoke to the group of dancers he said that there were a lot of people who believed in him, however, he was also careful to mention that, “I believed in myself.”
That is one of the fundamental message of the week to all of the children here: to see extraordinary things in each other, but also to see them in themselves.
So often, children with disabilities are treated as though their successes are not their own, but rather those of the people who support them. And it is so important to change that, to give children like mine the opportunity to own their successes.
Jodi Fischer, a mother of two dancers in the program, believes that the program allows for these successes by really caring about the quality of the dance. “One of the reasons we love NDI so much is how the bar is set high for excellence for all the dancers. It is just a great form of inclusion. And everyone has a blast.”
Here it is not just [typically-developing] children doing a nice thing for someone that needs help. It is really celebrating what everyone brings to the table.
Jodi’s older son Kurt, who is 16 and typically developing, and her younger son, Jack, who is 10 and has multiple disabilities, have very few activities that they can do together, but during the DREAM Project they have the opportunity to dance together.
“Here it is not just [typically-developing] children doing a nice thing for someone that needs help. It is really celebrating what everyone brings to the table, because each one of the children [is] bringing something absolutely wonderful and unique and it is absolutely showcased here,” Jodie says.
When asked if he likes dancing with his brother Jack, Kurt said that he absolutely does. “I think it is great," he tells me. "It is really special to get to dance with my brother in the same program.”
Jack agrees. I ask him if he likes dancing with his brother. He says, "Yeah."
I ask Jack if his brother is a good dancer. He says, "Yeah, I think."
I ask if he is a good dancer. He says, "YES!" Then, "I love everyone!"
For over seven years I have played many roles in my daughter's life, out of necessity: I have been her advocate, her instructor, her playmate, her translator. It has been one of the great pains of my life to see how few people work to establish true reciprocal communication with her. It has meant that my daughter has remained tied to me when she should be becoming more and more a part of the world.
I have always said that Esmé's superpower is making the right friends, in seeking out the people who will listen to the ways that she speaks. Most often these are adults (or Muppets, to be fair), but in five days at DREAM, she created friendships with a roomful of other kids who learned her, who established the true back and forth understanding of peers with her.
Rather than being the child who is so often left on the sidelines watching other children play, she was, for the first time, in the middle of the crowd of dancing friends on the stage, under lights going from magenta to cyan. For the entire performance, more than an hour, I sat in the audience watching with the other parents and fans. It put on display for me, and the rest of the world, a different way of seeing my daughter. It put on display the different way she saw herself, by the end of the week. From my seat I saw Josie shimmying her shoulders, Shira smiling and gliding across the stage, Sarafina leaping with long limbs in straight lines. Together the dancers created dazzling formations. The movement, I saw clearly, went back and forth.
At the end, all the dancers beamed.
It is not a matter of charity to invite children like mine to dance. As the DREAM Project shows, it is an opportunity. And it is hard to overstate what there is to be gained, not only for them, but also for their partners, and their audiences.
However, while access to dance classes is sort of a rite of passage in many childhoods, it certainly isn't a given for children with disabilities. How could it be that a child like Jack, who is so excited to dance that he loves everyone, might not have the opportunity? How could it be that a young woman like Josie, who is filled with jazz and is willing to face afternoons of complete exhaustion, wouldn't have a dance program to attend? How could it be that my daughter, who has pounded out impressive rhythm with her little feet since she was a newborn, hadn't been to dance?
As Jerron Herman reminds us, they just need to be invited. At DREAM they were invited, and the results were stunning. There are so many more children who just need to be invited to dance, to play with their peers, to find their place in front of the lights.
Photo credits: Hillary Savoie