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Tulsa Studies in Women's Literature, Volume 32, Number 2, Fall 2013
/ Volume 33, Number 1, Spring 2014, pp. 25-45 (Article)
DOI: 10.1353/tsw.2013.0042
For additional information about this article
http://muse.jhu.edu/journals/tsw/summary/v033/33.1.herndl.html
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Virtual Cancer: BRCA and Posthuman Narratives of
Deleterious Mutation
Diane Price Herndl
University of South Florida
The genome is a figure of the “already written” future.
–Donna J. Haraway,
Modest_Witness
1
It is one of the tenets of poststructural theory that there really are no
new stories to be told, that new narratives are simply reconfigurations of
old stories: retellings and reworkings. While I do not really want to take on
that claim, I do want to interrogate what happens when the convergence
of new technologies and bodies forces us to tell stories that feel quite new,
whether they are or not. In what follows, I am going to examine one of
these new stories about genetic testing and its aftermath. When one tests
positive for one of the two variations of the breast cancer (BRCA) gene,
one becomes a virtual cancer patient, but without actual cancer, and one
needs to find a new story to explain and understand the experience.
2
Many
people who confront illness deal with it by rewriting, as it were, their life
stories; in some ways, life narratives of having a genetic anomaly become
“autopathographies,” the term G. Thomas Couser uses to describe autobi-
ography that focuses on disability or illness.
3
To a large extent, however,
that descriptor does not fit since such memoirs are explicitly stories of
avoiding
illness. When one has a diagnosed breast cancer, it has a specific
location and shape, but when one is discovered to be BRCA positive,
cancer is not just a potential; it becomes a part of identity. It is, literally,
in one’s genes and has (re)written one’s life story. I will examine here the
question of what narrative structures can frame this new story of an illness
that is not, or at least not yet. I intend to argue that these stories of virtual
cancer move into the realm of the posthuman. “Posthuman” is a critical
term that seems to me rather baggy and amorphous, and I am going to use
the BRCA genetic test and stories about that testing as sites for clarify-
ing a definition of the posthuman as existing at the crossroads of bodies,
technology, and narrative. In this sense, the posthuman becomes a story we
tell ourselves about the technologizing of bodies. Finally, and perhaps most
importantly, I want to use feminist disability studies and feminist material-
ist theory to reframe those stories and to challenge us to tell different—and
I hope better—stories about our posthuman future.
Tulsa Studies in Women's Literature,
Vol. 32, No. 2/Vol. 33, No. 1 (Fall 2013/Spring 2014), pp. 25-45.
© University of Tulsa, 2014. All rights to reproduction in any form are reserved.
Virtual Cancer
2008 was the year of the virtual cancer memoir. During that year, two
full-length books and one documentary appeared—Pretty
Is What Changes:
Impossible Choices, The Breast Cancer Gene, and How I Defied My Destiny
by Jessica Queller;
Blood Matters: From Inherited Illness to Designer Babies,
How the World and I Found Ourselves in the Future of the Gene,
by Masha
Gessen; and Joanna Rudnick’s film
In the Family.
4
All of these texts focus
on testing positive for one of the BRCA mutations and deciding what to
do about it. Having the BRCA gene does not mean, in most cases, that you
have cancer, but that you have a deleterious mutation on either chromo-
some 13 or 17, which leads to an inherited disposition to develop cancer.
In the language that has grown out of Internet groups made up of people
who have the mutations, when you test positive for BRCA, you become
a “previvor,” and the narratives that surround the testing draw heavily on
cancer survivor stories.
5
Testing positive for BRCA does not mean that you
have cancer, but that your chances for developing breast or ovarian cancer
are very high. While hereditary mutations account for only around 10% of
all diagnosed breast cancer, they still cause about 25,000 cases per year in
the United States.
6
There are many ways BRCA heralds our genetic future,
including the fact that it represents a literal test case of whether or not a
company can patent a gene, the test for that gene, research on it, and any
possible future genetic therapy involving it.
7
In 2006, Myriad Genetics began a public awareness campaign called
“BRAC Analysis”; in the odd world that is the contemporary medical-
industrial complex, this also amounts to a marketing campaign for the test,
which costs a little more than $3,000. Myriad has a substantial direct-to-
consumer marketing staff, and its profits have increased steadily despite
the recession. Profits for the first quarter of the 2013 fiscal year on the
BRACAnalysis® test alone were $105 million.
8
In a testing ad that ran
on TV in 2006, a group of women of different ages and races (but who all
appear fit and healthy) overlap and finish each other’s sentences:
Breast cancer runs in my family: My Mother. My Grandmother. My Dad’s
sisters. I wondered if it would be inevitable. I found out my risk through
BRACAnalysis.
BRACAnalysis
is a blood test that has helped thousands of women find
out their risk for hereditary breast and ovarian cancer. After
BRACAnalysis,
I realized I could choose to do something now. To help reduce my cancer risk
now. With effective medical options. To be ready. Be ready. [As all voices
join together, the screen displays “Be Ready Against Cancer.”] To be ready
against cancer now.
[A voice-over adds:] If breast or ovarian cancer runs in your family,
BRACAnalysis can help you take steps now to reduce your risk. Discuss your
26
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32.2/33.1, Fall 2013/Spring 2014
personal and family history with your doctor. Visit BRACNow.com. Be ready
to talk and to take action. Be ready against cancer.
9
As empowering as this ad may sound, with its promise that women can
“do something now,” those “steps to reduce risk” include choices that
range from doing nothing, to increased surveillance, to prophylactic mas-
tectomy and/or oophorectomy (removal of the ovaries). Not surprisingly,
the decision to remove apparently healthy body parts, especially those as
culturally associated with femininity as breasts and ovaries, is an agonizing
and relatively unprecedented one. Many women with diagnosed breast
cancer find the loss of one breast a horrifying situation; women with only
a predisposition to an illness have an even harder time. As the ad sug-
gests, women come to such a decision not just with the information about
their test results, but with deep personal experience of cancer. Women are
usually tested for the mutation after they have lost several other family
members to breast or ovarian cancer, so such decisions are made in the
shadow of a terrible personal knowledge of how awful the disease can be.
Indeed, both Queller and Gessen begin their books with the stories of their
mothers’ deaths from breast and ovarian cancer. While Rudnick’s mother
is still alive at the time of the documentary, she has been through surgery,
chemotherapy, and radiation for ovarian cancer.
While both books document their authors’ decisions to undergo pro-
phylactic mastectomies, they are otherwise quite different books, and the
differences may help us to see how established narratives—older genres,
powerful master narratives—come to structure the way a new story of
the posthuman body can be told, and to a large extent, lived. Gessen is a
practicing journalist (her work has largely focused on Russia), Queller a
television screenwriter (she wrote for
Gilmore Girls
and
Gossip Girl),
and
in many ways the memoirs bear out these sorts of differences. Gessen’s
book includes elements of autobiography but only occasionally goes into
personal detail; it is largely investigative journalism.
Blood Matters
explores
and explains contemporary genetics, genetics testing, and genetic therapy;
cancer is only one of many diseases that she discusses. She spends a good
bit of the book explaining basic concepts in genetics, tracing Jewish his-
tory to understand why Jews, especially Ashkenazi Jews, have a particular
disposition to certain genetic anomalies, and recounting stories of other
communities with high incidences of genetic predispositions to illnesses.
As a way of understanding how people make choices about what to do
in the face of genetic testing, she examines recent developments in the
psychology and economics of decision making. The chapter describing her
own surgery, for instance, takes up only six pages (of the book’s 320). By
contrast, Queller’s
Pretty Is What Changes
is almost wholly personal and
focuses at least as much on her love-life and family-life dilemmas (will she
27
ever find a husband and be able to have children, now that she is BRCA
positive?) as it does on cancer. Queller’s book is essentially an inverse of
Gessen’s: hers includes around six pages of information about the science
surrounding BRCA and genetics. Rudnick’s film falls in between the books,
comprised as it is of about half investigative journalism and about half per-
sonal reflection. The film differs not only in genre but also in some other
salient ways, including the fact that she does not, in the course of the film,
go through with a mastectomy, but unlike either of the others, she does get
involved in the politics of BRCA testing and gene patenting.
There are, however, some interesting similarities between the narra-
tives. Both Queller and Gessen begin their memoirs with super-charged
emotion and anxiety. When they imagine cancer, it is not just the hor-
rors of surgery, radiation, and chemotherapy that they fear, but the brutal
slow death of cancer metastasis, with which they are intimately familiar.
Rudnick traces her family tree, with several generations of women who
have died of either ovarian or breast cancer, and includes interviews with a
woman who is dying and with that woman’s family after her death. While
Gessen presents her mother’s story rather sparely—she was not on good
terms with her emotionally distant mother and not there to witness her
mother’s decline—Queller spends the first half of the book recounting
her mother’s struggles with both breast and ovarian cancer and her own
participation in the long-term hospice care of her mother. In this way,
the memoirs are typical of the experience of most women who currently
learn of their BRCA status, since most women who are tested have family
histories that indicate a reason for the test. For both the writers and read-
ers of these memoirs, cancer is not some abstract unpleasant option, but a
visceral specter.
10
Of course, all memoir works as a powerful form of pathos,
putting one person’s subjectivity on display, but the likeliest audience for
such memoirs is women who have the same condition, creating a high level
of identification between readers and text.
11
Both writers recount at some point being forced to consider themselves
as cancer patients already, even though neither has the disease yet. To
indicate this change in status, they employ the trope of becoming card-
carrying cancer patients. Both women, in describing their interactions with
the medical establishment after testing positive for BRCA, mention that
their first step is having to go to an office that issues them an identification
card registering them in the cancer clinic. Queller finds herself at the same
cancer center where her mother had been treated and records her shock at
“becoming a card-carrying member of the cancer center” (p. 88). While for
Queller the emotion is shock, for Gessen, it is inauthenticity: “Whenever
I pulled out my cancer-center patient card . . . I received a recognizable
sympathy look, the sort that says, ‘So young. So tragic. So frightening.’ I
felt a bit like an impostor: I did not have cancer” (p. 13). The vacillation
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32.2/33.1, Fall 2013/Spring 2014

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