It's tempting to read John Langdon Down's seminal 1866 paper about Down syndrome through a modern lens, to be outraged by its title (Observations on an Ethnic Classification of Idiots) and embarrassed that Down thought that "whatever advance is made intellectually in the summer, some amount of regression may be expected in the winter."
But to dismiss the paper entirely is to miss the fact that Down seemed to see potential in children with Down syndrome. He said that they would benefit from "systematic training," and that with hard work, they could be "greatly strengthened." In those two phrases, he seems to foretell the existence of an amazing collaboration between Children's Hospital Boston and the Boston Ballet, called the Adaptive Dance Program, that puts kids with Down syndrome on stage where they can dance together, twirl, twist, laugh and beam with pride.
There's very little about the lives of modern children with Down syndrome that John Langdon Down would recognize. As Allen Crocker, MD, who has worked at Children's and with kids with Down syndrome for nearly 60 years, says, "The lives of these people has totally evolved in an entirely more humanistic and positive direction. In the last 30 years, they've become honest-to-God citizens of our culture, which they were not before."
Indeed, in Down's time—and for nearly 100 years after—it was expected that children with the condition would be taken from their families to be institutionalized, and were marginalized in society to the point of literally disappearing. Expectations for their educational, physical and social development were non-existent.
But two important events in 1973 began to help change all of that. The first was the passage of the Rehabilitation Act, which prohibits discrimination on the basis of disability. In particular, it helped mainstream the education of children with disabilities by requiring school districts to provide a "free appropriate public education" to each qualified student with a disability. The second important event was the founding of the National Down Syndrome Congress, a group of parents and family members of children with Down syndrome that advocates on behalf of these children.
Taken together, these two events meant that children with Down syndrome began to emerge from the shadows; they started appearing in classrooms across the United States and had a strong voice in the community and the government that wouldn't accept anything less than equality.
They also started living longer. Down syndrome involves some degree of intellectual disability and characteristic facial features, but it also usually includes other health problems, the most common of which are complex heart defects. In John Langdon Down's time, surgeons were unable to fix these heart problems, so children with Down syndrome usually died well before adolescence. But today, after much hard work by surgeons, their heart conditions are fixed with relative ease while they're infants, which has pushed average life expectancy up to around 55 years.
It was with all of these medical and societal changes as a backdrop that Mickey Cassella, PT, director of Children's Department of Physical and Occupational Therapy, approached the Boston Ballet in 2002 with the idea for a dance program exclusively for children with Down syndrome.
Cassella has worked with children with physical and developmental disabilities for more than 30 years. For the last 18 years, she has also worked at the Boston Ballet, providing physical therapy services to the company's dancers. But she had never seen a program like the one she was proposing.
"I've worked so long with children with physical disabilities and I know how difficult it is for their parents to find programs for them," she says. "So I suggested that the Boston Ballet think about opening its doors for children with Down syndrome."
They agreed, and in so doing, became the first ballet company in the country to invite children with Down syndrome into their studios to dance.
Cassella recruited Gianni Di Marco, a long-time dancer with the Boston Ballet, to lead the group. "I had known Gino for many years and I just knew that he had the right personality and temperament to work with the children," says Cassella. "He's incredibly creative and very, very enthusiastic and very, very patient and has a terrific sense of humor. So when I approached him and asked if he would consider being an instructor, he was so thrilled."
For his part, Di Marco thought the class could help the children connect with a part of themselves that had been largely neglected. "These children perhaps don't have the inclination [to move their bodies] when they are younger," says Di Marco. "But the music, the stop and start and the rhythm of the drum beat have helped them understand the process of moving and controlling their bodies."
Angela Lombardo, who is the coordinator of Children's Down Syndrome Program and the mother of 12-year-old Isaiah, who has taken part in the Adaptive Dance Program since it started, agrees. "Isaiah has been through multiple stomach surgeries, so he wasn't the strongest kid in the world and he still isn't, but this program has given him such a sense of trunk control and posture. And I think it plays a role in his body awareness, how he moves his body, his motor skills and his coordination."
There are also intangible benefits. Watching the children practice and perform, there's an exuberance and camaraderie that anyone who has been to a school play will recognize. The children love to perform for their families and friends, to celebrate each others' accomplishments and, most importantly, express their individuality.
It also gives them something that most other kids take for granted: the opportunity to spend time with other children who are like them. "The Adaptive Dance class was Isaiah's first real experience, at age 6, being with only kids with Down syndrome," says Lombardo. "It was very interesting for him because I think he expected them to be just like him." Instead, he found that they weren't just like him. Like everyone else, they had a range of abilities, interests, talents and personalities. And this in itself was eye-opening for him—so much so that Isaiah has come to think of himself in a new light. "He calls Down syndrome his extra bonus," says Lombardo. "He thinks the rest of us are lacking; we're boring, typical."
The goal of the Rehabilitation Act, organizations like the National Down Syndrome Congress and Children's own Down Syndrome Program is to get to a place where the playing field is level for people with intellectual and physical disabilities—where they have access to the same opportunities as the rest of us.
Despite his belief that children with Down syndrome had the potential to do more than they were given the chance to do, it's a place that John Langdon Down could scarcely have imagined. But it's a place that Angela Lombardo has seen, and she tries to share the vision of it with parents who have had, or are about to have, a child with Down syndrome. One mother, who already had two children without Down syndrome, called her recently wondering how to parent her newest child. "I said, ëYour job with her is no different than for your other two kids," says Lombardo. "Give her every opportunity to do her best, expect the world of her and follow her lead."