Biotechnology and Culture: Bodies, Anxieties, Ethics

By Paul E. Brodwin | Go to book overview

Chapter 8
Chorea/graphing Chorea
The Dancing Body of Huntington’s Disease

ALICE RUTH WEXLER


I.

1963: Northwestern Minnesota

“The first time I heard the words Huntington’s chorea I was 19
years old and 5 months pregnant with my first child. ‘Ma’ had
the flu very badly. I brought her to the doctor, our elderly family
physician. After observing her, he asked me if others in her family
had actions [movements] like hers; I said ‘no.’ He called in a
neurologist, who met with us on the hospital steps (my dad, my
sisters, my husband and myself—our brother, at 14, was ‘too
young’ to attend). This neurologist told us that our mother had
Huntington’s chorea, that little was known about it, that there was
no cure, and that it had a definite genetic factor. He shook Dad’s
hand and left us standing on the hospital steps with the elderly
doctor, who, after a few minutes, lowered his head and walked to
his car. I followed him and said, ‘Does genetic mean hereditary?’
He told me that after years of depression and illness, my grand-
father committed suicide. He then said, ‘You don’t have to worry,
this disease only hits the slow or sickly in the affected family, and
it’s “dying out” because babies are healthier now.’ He told me
that my mother was a very sickly child and also that there had
been a sister who ‘never was quite right’ and was committed to an
institution as a teen-ager. ‘This caused the great depression in
their father.’ He ended with the statement, ‘You’re bright and
healthy, you and yours will be fine.’ I went back to my Dad and
told him some of what the doctor had said. My Dad, in his stern
German way, said, ‘Ya—we better be a lot nicer to your sister so
she doesn’t end up like ma quite yet.’”

—LaDonna Chouinard, “A Minnesota Story”

Illness, writes the medical philosopher Howard Brody, is a story. And Huntington’s disease (HD) is a particularly dramatic story, with its often extreme personality changes, loss of cognitive abilities and emotional control, and, most visibly, the jerky, involuntary, and sometimes dance-like movements which gave the disorder its original nineteenth-century name, Hun

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