REVIEW
Feminist Bioethics and Intersex Medical
Interventions: A Review of Making
Sense of Intersex: Changing Ethical Perspectives in Biomedicine
(Indiana University Press, 2014)
E. Kale Edmiston
Vanderbilt University
kale.edmiston@vanderbilt.edu
How does a clinician determine what constitutes an
ethical problem? In Making Sense of
Intersex, Ellen Feder argues that cases that appear
straightforward are the most likely to result in ethical
violations. Regarding intersex surgical interventions, which are
typically performed in infancy, Feder contends that clinicians often
miss the ethical complexity of parental decision-making on behalf of
children. Informed consent presumes an adult who can, with available
information, make choices about their own body. For infants who cannot
consent to surgery, however, how do parents and clinicians negotiate
the boundaries of medical decision-making on behalf of infants? What
are the long-term ethical implications of decisions to alter an
infant’s body? As intersex adults have pointed out, their primary
bioethical concern is not accessing needed care, but the ability to
refuse interventions. Feder, a professor of philosophy at American
University who specializes in bioethics, examines how assumptions about
normalcy produce the need to conceal intersex bodies, and how these
assumptions result in shame and familial conflict. Throughout the
book, Feder investigates intersex medical interventions from multiple
angles, including the primacy of the child-parent relationship, the
ethics of caregiving and consent, and the complex slippage that occurs
when “good medicine” does not equate to “ethical medicine.” By
composing an interdisciplinary analysis of medicine, Making Sense of Intersex can be
read with interest by medical providers, bioethicists, and medical
humanities scholars.
Making Sense of Intersex
begins with an historical account of atypical sex/intersex as a medical
category. Feder claims that the development of the Standard of Care
(SOC) for intersex is not a linear narrative of progress towards
ethical treatment of intersex patients. Building upon the work of Alice
Dreger, co-founder of the Intersex Society of North America, Feder
argues that contemporary fascination with “hermaphroditism” (an
anachronistic term for intersex) can be traced to the Victorian period,
when intersex first became a medical category, and intersex people
became objects of fascination for clinicians. Nineteenth-century
attitudes towards intersex individuals were connected to conservative
ideas about gender and sexuality, to the expansion of medical
authority, and, through military exams given to British colonial
forces, to the subsequent “discovery” of the high prevalence of
intersex individuals. During this era, the first genital surgeries were
performed, albeit at the request of consenting adult patients (Dreger,
1998). In the early twentieth century, care of patients with congenital
adrenal hyperplasia, an intersex diagnosis with concordant medical
needs, was connected to medical need and patient autonomy. In contrast,
the development of SOC practices in the mid-twentieth century more
closely followed conservative Victorian-era attitudes by emphasizing
aesthetic surgical intervention. Feder posits that the modern
insistence on surgical intervention for atypical genitalia relies upon
an ahistorical perspective, and thereby ignores the ways in which
intersex people have lived happily without cosmetic surgical
interventions in other eras.
Feder proceeds with a discussion of the infant-parent bond. SOC for
intersex diagnoses is fraught because it requires clinical
decision-making on behalf of an infant. Using Bourdieu’s concept of habitus, that is, the unquestioned
frameworks that guide cultural structures, Feder discusses how such
assumptions generate an imperative for normalcy, thereby creating
situations wherein parents who want nothing but the best for their
children can do significant harm. Such decision-making requires that
parents imagine what life might be like for their newborn infant as an
adult, sexual being. Parents must make a decision for their infant that
is “in their child’s best interest,” but are likely not equipped with
the medical knowledge or caregiving experience to do so. By engaging
with feminist scholarship on motherhood and Kleinian psychoanalytic
theory, Feder suggests that motherhood necessitates attentive care and
interpretive skills to anticipate a child’s needs. Anticipation of
these needs is predicated on parental identification, the idea that
parents are able to see themselves in their child, and therefore
interpret their needs based on a
priori knowledge from life experience. Because sexual difference
is of such primary importance in Western conceptualizations of the
body, parents of intersex infants are unable to imagine themselves as
their child, a future intersex adult, and instead project a desire for
normalcy onto their child as an adult who does not yet exist. In the
case of intersex infants, Feder contends that surgical interventions
without the patient’s consent represent a failure of parental
identification.
Feder then deliberately “turns the lens” from intersex patients to
clinicians, arguing that the assumption of a clinical imperative to
conceal intersex bodies stems not from medical need but from projected
provider disgust. A series of qualitative interviews with medical
doctors follows an innovative approach in the intersex literature that
allows for insight into the medical decision making process and the
assumptions underlying it. Feder offers perceptive analysis of these
conversations, concluding that for clinicians involved in the care of
intersex infants, a “normal” appearance, with all of its presumed
social rewards, takes priority over the sexual pleasure and at times
the medical need of an intersex infant. Proponents of genital surgery
in intersex infants maintain they are helping their patients avoid
shame. However, we must consider the source of shame by asking
who provokes it; shame and disgust are implicit when families are
instructed to change their child and to keep their diagnosis a secret.
Feder concludes instead that we should relocate the “imperative for
change” from the bodies of intersex infants to the providers that care
for them.
While critics in the West often cite genital circumcisions in
sub-Saharan Africa as coercive, they take for granted or ignore infant
intersex surgeries performed in the West. Feder (2014) addresses this
paradox by arguing that aesthetic genital surgery on intersex infants
may represent a “difference of degree rather than kind (p. 127).”
Citing ethnographic work among the Kono of Sierra Leone, who practice
circumcision as a rite of adulthood that allows for political
participation in society, Feder argues that Kono initiation is similar
to Western surgical practices in intersex infants, differing only in
that it is required of everyone and is a public ritual, while in the
West genital surgeries are required of only a few and are considered
private and shameful. Criticism of non-Western practices relies on a
false dichotomy rooted in colonialism that describes Western practices
as medical and therefore necessary, and non-Western practices as
primitive and therefore unwarranted. However, Feder (2014) suggests,
“practices that have been well-established are not the result of
careful…reflection, but instead are a matter of repeated enactment of
cultural values...” (p. 132). In insisting on the modification of an
infant’s body, those who promote genital surgeries are in effect
suggesting that it is more important to change an individual’s body
than it is to change a society that insists on a gender binary.
In the latter half of the book, Feder asks why, if SOC for intersex
infants has changed drastically in the last twenty years, has the rate
of infant genital surgeries remained the same? Many providers state
that early genital surgery is “what the parents want.” This sentiment
mirrors previous arguments for infant surgical intervention that
assumed parents would be unable to bond with a child with atypical
genitalia. The second half of the book questions these
assumptions and offers an analysis of power in parent-child and
patient-provider relationships to the study of bioethics. Informed by
psychoanalytic interpretation of the parent-child bond, Feder analyzes
a series of qualitative interviews with parents of intersex
children. She argues that the parent-child bond is one of interdependence, that is, parents
don’t just shape their children, but are in turn shaped by the act of
parenting. Feder similarly turns to the patient-provider relationship,
suggesting that physicians help to shape reality for their patients;
the provider assumption that the intersex SOC represents guidelines for
“what is” rather than “what should be” represents a refusal to
acknowledge the unequal power dynamic between provider and patient.
Alternative conceptions of time are implicit throughout Making Sense of Intersex. The birth
of an intersex individual creates urgency in the minds of providers,
while simultaneously forcing parents to re-imagine their child’s
future. Embedded in the argument for aesthetic surgeries for intersex
individuals is the idea that individuals with atypical genitalia cannot
have a future, or that their only possible future is tragic. In fact,
Feder begins Making Sense of Intersex
with a critique of the 2000 statement by the American Academy of
Pediatrics, which states that the birth of an intersex individual
represents a “social emergency.” Feder’s framing of the implicit
beliefs underlying the “emergency” of an intersex body parallels
arguments posed by feminist disability studies scholars such as Alison
Kafer and queer studies theorists such as Jack Halberstam about the
role of time, particularly “futurity” in conceptualizing non-normative
bodies. Their work considers similar bioethical questions in the
context of prenatal genetic counseling and violence against transgender
people, making significant contributions to discourses on non-normative
bodies. Feder’s work would have been strengthened by engagement with
these existing critiques of bioethics, power, and violence. Likewise, Making Sense of Intersex offers
feminist disability studies and queer studies additional tools for
discussing the medicalization of embodied difference. Ultimately,
Feder, Kafer, and Halberstam are all asking the same question: who gets
to decide which bodies are anomalous—and, ultimately, will such bodies
be allowed to exist in the world on their own terms?
Acknowledgements
Special thanks to Dr. Aimi Hamraie for their
contributions to the revision of this manuscript.
References
Dreger, A.A. (1998). A history of intersexuality, from the age of
gonads to the age of consent. Journal
of Clinical Ethics, 9(4),
345-355.
Feder, E.K. (2014). Making sense of
intersex: Changing ethical perspectives in biomedicine.
Bloomington, IN: Indiana University Press.
Bio
E. Kale Edmiston is a
post-doctoral scholar at China Medical University in Shenyang. He
recently completed his PhD in Neuroscience at Vanderbilt University,
where he was also the Co-Director of the Vanderbilt University Medical
Center’s Program for LGBTI Health, as well as the Co-Founder and
Director of The Trans Buddy Program. His research interests
include feminist and transgender science studies, the neuroendocrine
system and social behavior, and the neurodevelopmental effects of
stress and trauma.