St. Petersburgh Times Online: Music Lights a Fire
Written September 6th 1998
By Dave Scheiber
Posted by Justine
Every August, Belvoir Terrace opens its doors to some 50 people who have a rare genetic condition called Williams Syndrome. They share a unique array of traits that include heart problems, a pixie-like facial appearance, mental ability from low average to mildly mentally handicapped , excellent verbal skills, a gregarious demeanour and a passion for music. The man who identified the syndrome in 1961, a New Zealand doctor named J.C.P. Williams, knew nothing about the music characteristic. What scientists have found so far is critical not only to helping people with Williams but also the research is providing important insights about how the brain works, how we learn to speak, and how our personalities are formed. Scientists are fascinated by the remarkable verbal skills of most Williams people and are mystified, too, by the musical connection. Many Williams individuals have perfect or relative pitch. Almost all have a love of music that approaches the spiritual. It wasn't until 1993 that the link was established between music and Williams individuals. That, in turn, paved the way to the creation of the camp a year later. Under laying it all is the notion of discovering untapped potential in any person with special needs. "We have found ways to understand Williams people and that has allowed us to help them realize potential that was once never thought possible," says University of California-Irvine professor emeritus Dr. Howard Lenhoff, who helped create awareness of the connection between music and Williams Syndrome. Lenhoff's work was fuelled by his 43-year-old daughter, Gloria, an acclaimed Williams performer who can sing powerfully as an opera soprano in 25 languages. "The same principle applies with other handicapped people," Lenhoff adds. "Everybody focuses on what they can't do instead of what they can." The breakthrough came in 1993, when scientists determined that Williams individuals all were missing a tiny portion of genetic material in one of the two copies of chromosome No. 7 that are found in each cell of the body. That missing portion includes at least 15 individual genes. One of them is a gene that produces Elastin, a protein that is vital for helping elastic fibres develop in major arteries, the lungs and skin. The absence of sufficient Elastin does not explain all aspects of Williams Syndrome, a random chromosomal disorder affecting 1 in 20,000 births. Scientists hypothesize that other missing genes correspond to certain traits of the syndrome. One of the other missing genes, LIM kinase-1, may hamper spatial awareness. That may be why simple activities such as drawing shapes, arranging blocks, even walking without bumping into something can be a major challenge for a Williams person. Lenhoff suggests that the Williams brain is 20 percent smaller than the average brain and the left planum temporale, which is enlarged in musicians who have perfect pitch, is either the same size as normal humans or even bigger. The article offers many great stories of people of all different ages with Williams disorder who are deeply affected and involved in music and the music camp at Belvoir Terrace.
Wow! This is such an interesting article. It really helps you to understand how much music has touched their lives and is virtually a means of survival for a disorder that has taken away their ability to do other “normal” human things. It is great that the parents of the children with this syndrome are focusing on what their children can do instead of what they can’t do. One could spend years as most of us do in school focusing on what we aren’t good at, such as for me it was math, for some it is sports or even for some music. Our school system is designed to make us all well rounded individuals and I understand this, but what if the subjects that we are or were learning while we were in school caused us to feel negatively towards ourselves and or cause/ed anxiety in us. Would going to school then be worth it? So for people with Williams music seems to be the tool to their education, social interaction and lets their true self-shine through the many disabilities they have to deal with. For people with this syndrome I wonder what type of learning system they have when they attend school? Do they have special music classes for people with not only Williams but also for people who are mentally handicapped in some way or form? It is obvious from Williams syndrome that language and music must have common processes in the brain, which is something that researchers have long debated. From what I have learned about language and music is that the temporal lobes help humans memorize and the frontal lobes help us to unconsciously learn and use language and music. These lobes must be an important aspect in Williams syndrome brains just as is the planum temporale.