Monday, May 04, 2009

The Strangest Song. Book review

The Strangest Song. Book reviewGloria Lenhoff was born prematurely in 1955. Although she was originally assessed as a healthy child, she did not develop normally. It was not until Gloria was in her 30s that her developmental problems were associated with a specific diagnostic label. Williams Syndrome was identified. This is a genetic condition that occurs once in 7,500 births. It results in a characteristic physical appearance: restricted physical growth, small pointed facial features and restricted intellectual development.

This book, written with Gloria’s parents, is the story of her subsequent life, paralleled by the story of Williams Syndrome itself. Williams Syndrome leads to one particularly fascinating characteristic: musical ability. Howard Lenhoff noticed that his daughter was especially attentive when he played the guitar or played a record. She seemed to respond particularly to sound and noise. This story is the narrative of how Gloria Lenhoff became a performing singer, and how her life was shaped by a musical competence at odds with all her other limitations.

That aspect of her story begins with an account of her bat mitzvah, when she sang from the Song of Songs, and also played the accordion that her mother had given her in an attempt to foster her developing musical interest.

The story continues with two related narratives. There is Gloria’s own career as a singer. She progressed to giving public performances andmaking recordings, able to memorize and perform songs in different genres and different languages. It is also the story of how her father Howard Lenhoff worked to establish the research credibility of the association between Williams Syndrome and musical ability. The narrative takes us beyond the Lenhoff family, to encompass theWilliams Syndrome Association and the eventual provision of musical opportunities for people affected by it.

This is not an academic study of Williams syndrome, nor is it a contribution to our general understanding of dysmorphic and other genetic syndromes.

Readers of this journal will, however, find it a fascinating case study of how parents of affected children can work to search for and establish meaning; how they can develop their own forms of expertise in trying to unravel genetic problems; how self-help groups can mobilize and sponsor scientific knowledge in specific conditions.

It is also an example of the savant narrative, another example of unusual creative or performing abilities associated with disabling conditions. It is a fascinating account of how one small deletion (on chromosome 7) can give rise to a complex picture of physical, personal and intellectual characteristics.

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