Relatives of Organ Donors Are 'Perpetually Silenced,'
Says Anthropologist Lesley Sharp
Lesley
Sharp, whose specialty is research on organ donors,
was interviewed for the Chronicle of Higher
Education's Verbatim section by reporter Peter
Monaghan. The following article is reprinted with
permission of The Chronicle of Higher Education
from its issue of Dec. 1, 2000.
Book
Aims to Give a Voice to Relatives of Organ Donors
By
PETER MONAGHAN
The relatives of organ donors are "perpetually
silenced," says Lesley A. Sharp, an assistant
professor of anthropology at Barnard College.
"Quite literally, people do not want them to speak,"
she says. Ms. Sharp is writing a book on their
effort to combat the anonymity of transplants
through such practices as setting up Internet-based
"cemeteries" to commemorate the dead and identify
their beneficiaries.
Q.
How are the relatives silenced?
A.
Donor kin are assumed [by transplantation professionals]
to be extremely volatile, emotionally. They're
literally described as dangerous people who might
attack the recipient. At presentations -- for
example, annual memorial events at hospitals where
you thank your donor family -- the organizers
really manage donor kin very carefully, because
they don't want them to speak about the tragedies,
about the deaths.
Q.
What other public commemorations are appearing?
A.
There are transplant Olympics that are held every
other year in this country. Until recently, they
were almost exclusively for organ recipients,
to celebrate that they had survived and were healthy.
Only a few years ago did donor kin in large numbers
become involved. So, a big question for the organizers
is, should they be in the same building, should
they actually cross paths?
Q.
Should they?
A.
I only know of a few exceptions where it was a
mistake - one involved a family of color who met
the recipient and the recipient was racist, and
was horrified and would have nothing to do with
the family afterwards. It was extremely painful
for the donor family. But in general what happens
is that these become very involved relationships.
They're not easy ones, but they're very moving
tales about, well, what do you do once you meet
each other and what are your obligations to one
another as social beings?
Q.
What do transplant professionals say about such
meetings?
A.
That varies radically... . It's difficult to prohibit
it, because letter writing is considered a fairly
normal thing these days, which it wasn't 10 years
ago. Now, after you get your transplant and you're
out of the hospital, the procurement professionals
really let you know that it's not nice if you
don't write a thank-you note... . But professionals
read the mail, regularly, and edit material, cross
out names and addresses, consistently.
Q.
Don't they often paint donors as young cancer
victims when in fact many have been killed in
gang violence?
A.
Yes. Somewhere around 10 percent of donors, in
some places more, are victims of gun violence...
. No one wants to talk about this aspect of it,
either, because again that undermines the idea
of who these young victims are.
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(c) 2000 by The Chronicle of Higher Education.
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