By Jess Libow ’16
“I always wanted to write a book about Williams Syndrome,” David explained after a workshop with songwriter Odie Blackmon, “but I might have to change it up. There should be a song about this!” I met David, and many others, at the Academy of Country Music’s Lifting Lives Music Camp at Vanderbilt University this past June. I was lucky enough to receive a Gertrude Albert Heller Memorial Grant to sponsor my trip to Nashville, and am incredibly grateful for the experience.
Lifting Lives is a weeklong musical experience for people ages 16 and older with Williams Syndrome. Over the course of the week, campers from all over the country come together to write a song with renowned Nashville songwriters and, after much rehearsal, record and perform their original work at the historic Grand Ole Opry.
While performing a song coined only a few days earlier might be intimidating to most, particularly in such a hallowed venue, this is just the kind of setting in which a lot of people with Williams Syndrome thrive. Williams Syndrome (WS), is a congenital intellectual disability caused by the deletion of certain genes on chromosome 7. According to NIH, an estimated 1 in 7,500 to 10,000 people have WS, making it extremely rare. In addition to high levels of anxiety and range of medical issues including cardiac conditions, people with WS are likely to have a number of distinct social qualities. Studies have shown, for instance, that people with WS have a strong predilection for music. People with WS also tend to have remarkably little social inhibition; they are eager to meet and please others and are deeply attuned to the emotional states of those around them. Their profound desire to connect lends itself easily to musical performance. People with WS are often natural storytellers.
As an English major interested in disability studies, I was drawn to Lifting Lives because I saw it as an opportunity to witness the self-narration of people with disabilities through songwriting. This year, the campers wrote a song with Ross Copperman and Heather Morgan titled “Wherever You Go.” It’s a generally uplifting song about aspirations and supporting one another. The most notable part of the song is the bridge, which stands out for its capacity to be at once universal and incredibly specific to people with WS. “Thunder roars and the rain might fall,” the song goes, “but together we’re unstoppable.” This brief moment in the song addresses two significant characteristics of WS. People with WS have extremely high levels of anxiety, particularly about events beyond their control. Thunderstorms are a common stressor for a number of the Lifting Lives campers, and were a constant topic of discussion throughout the week. Because of the extent to which the “roar” of thunder produces anxiety in people with WS, when the campers sing this line they are essentially referring to the highest possible level of emotional discomfort – it is both a metaphor and a reality. The second half of the line, “but together we’re unstoppable” speaks directly to people with WS’s valuation of human connection. The lyrics suggest that through interdependence, the campers have the capacity to withstand anxieties and other obstacles, a message that resonates with them personally but is applicable across differences and abilities.
In addition to writing and performing an original piece, campers participate in a range of music-oriented programming. There are celebrity meet and greets along the way (this year with JT Hodges, the Swon Brothers, Scotty McCreery, and Hunter Hayes), but what the campers ultimately walk away with is a glimpse inside the professional world of country music and what it means to be a performer. In daily rehearsals with the camp’s music directors, the campers work on their singing and adjust to being part of a choir and singing as “one voice” rather than showcasing their individual voices. Professionalism is stressed throughout the week; campers are encouraged to be respectful of the boundaries of the artists they meet as well as to present themselves well on stage.
But it’s not all business: campers get to experience a lot of Nashville hotspots including the Wildhorse Saloon, the Bluebird Cafe, and Winner’s Karaoke Bar. Tours are taken of the Gibson guitar factory, the Country Music Hall of Fame and Museum, and Hatch Show Print. The experience is unforgettable, and a lot of that, according to many of the guys in my dorm, has to do with the emphasis on both independence and community at the camp.
In my role as a counselor I lived in a cottage-style dorm at Vanderbilt with eight male campers and one other counselor. Together we worked on daily independent living skills including making breakfast, taking out the trash, making our beds, managing medication, and keeping the kitchen and bathrooms clean. The people who come to camp have a range of experience levels in this regard: some live at home with their parents, while others live independently or in group living facilities. But at camp, we operated as a team. Josh helped Nader make his bed on the first day. Michael offered to switch his place in the shower schedule if someone else needed a little extra time. Mark checked with me every morning to make sure his clothes matched, never asking for help but just looking for a little affirmation. Some of the guys would pray together before going to sleep. We had fun too though. Orie liked to show if his yoyo skills and celebrity impressions were a regular occurrence from the group. It was a pet peeve of mine when people left trash in the pantry and I once opened my door to an empty muffin tin waiting for me as a prank. Before bed, we would come together as a group to reflect on the day and our experiences at camp. During these conversations, the guys called each other their “Williams Syndrome brothers.” People talked about how good it felt to be with their new friends, and there was never a shortage of gratitude expressed.
For me, this perspective was the most memorable aspect of camp. It was in these moments that I saw how important community and affinity are not just to people with Williams Syndrome, but to people in general. Yes, its a symptom of Williams Syndrome to be friendly, to not treat anyone like a stranger. But I was touched to be welcomed into this group of empathetic, supportive, and caring people. It’s a community I hope to maintain a connection to moving forward.