Bioethics Blogs

Wherever You Go: Self-Representation and Williams Syndrome

Jess Libow is currently a summer intern at the Bellevue Literary Review. She is a rising senior English major at Haverford College interested in disability studies.

All photos courtesy of camp staff

Looking out over the dance floor at Nashville’s Wildhorse Saloon as other members of our group line danced with the crowd below, Mark told me “It’s good for us to get out into the community so that people know we exist.” As a counselor this past June at Lifting Lives Music Camp at Vanderbilt University, run by the Academy of Country Music, I lived in a dorm with Mark, who is 51, and seven other men with Williams Syndrome. After this experience, I couldn’t agree with him more.

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.

Recording Studio

While performing a song written only a few days earlier at the Opry might be intimidating to most, many people with Williams Syndrome thrive in this sort of setting. Williams Syndrome (WS) is a congenital neurodevelopmental disorder caused by the deletion of 26 genes on chromosome 7. WS is an extremely rare condition: the NIH estimates it occurs in 1 in 7,500 to 10,000 live births. In addition to mild to moderate intellectual disability and a range of medical issues, including cardiac conditions, people with WS are likely to have a number of distinct social qualities.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.