The social organisation of knowledge concerning fetal alcohol syndrome:
biomedicine, public policy, and ruling relations
Carolyn Schellenberg, RN, MSc, PhD (c)
Contours of Contestation
November 2005
University of Victoria
1
In just over thirty years, fetal alcohol syndrome has evolved from a new medical
diagnosis to one that has captured the attention of researchers, policy makers, the media,
and the general public in Canada and, indeed, in North America. In the past few years,
governments in both countries have allocated millions of dollars for prevention. Fetal
alcohol syndrome, commonly called FAS, is a medical diagnosis that is applied to
children who show physical and/or neuro-developmental characteristics that are
associated with – many would say caused by – women drinking alcohol during
pregnancy. Despite a growing body of research that challenges this view of causation,
policies and media messages in Canada continue to convey a dominant theme of maternal
responsibility for fetal harm, one that is implicit in the medical diagnosis of FAS.
A diagnostic system – disease classification – lies at the heart of biomedicine
(Kihstrom, 2002). In western society, biomedicine is generally thought of as that
objective, factual knowledge (Rhodes, 1996) found in the realm of positivist science. In
my own research, I am beginning to understand the diagnosis of fetal alcohol syndrome
as a classification scheme that represents a particular view of women and children, a way
of knowing about them that is not necessarily helpful to them. I begin my discussion of
fetal alcohol syndrome with two images suggestive of how women are known – one
drawn from my own nursing experience, the other from a dominant policy perspective.
In 1980, as a new public health nurse working in an area of rural British
Columbia, I made a postnatal visit to an 18 year old mother and her recently born infant.
This visit was the beginning of a relationship that developed out of my concern for the
well-being of this young mother and her baby. During the ensuing year, I frequently
turned off that lonely stretch of highway, made my way down a rutted road to the small
barren cabin, there to find Alice1 sitting with her little boy, trying to keep warm near a
rusting wood stove. Over the months, I watched Alice’s son’s poor and declining weight
gain and saw Alice looking thin and hollow. Sometimes, there was little or no food for
either. Rarely was Alice’s husband, a man some thirty years her senior, present. Alice
didn’t talk about him much. She said he drank and she told me he didn’t beat her.
Sometimes I smelled alcohol on Alice’s breath. I worked with the social worker and
1
Alice is a pseudonym.
2
family doctor to try and strengthen supports and resources for this family. As those of us
who worked with Alice worried over her and her baby, the country doctor told me there
was little we could do to help the boy gain weight or meet some of the expected
developmental indicators. The child, he said, had fetal alcohol syndrome.
I had heard of fetal alcohol syndrome, although, at that time, the diagnosis was
less than 10 years old. For me and for an increasing number of doctors, nurses, and social
workers, fetal alcohol syndrome meant that a child had been damaged in utero due to the
mother’s drinking during pregnancy. In other words, maternal alcohol consumption
explained the problems that this child was having in growth and development and would
also explain later problems likely to occur in learning and social interactions. Like many
other women whose babies are called FAS in Canada, Alice was First Nations, poor,
nutritionally deprived, isolated, and depressed. That is only what I knew from talking
with Alice and spending time in her barren home. There is much that I will never know
about the experiences and conditions of her life.
I invite you to hold onto this image of Alice as we fast forward to the halls of a
prominent Children’s Health Centre in British Columbia, where I recently noticed a
poster featuring an image of a woman’s pregnant abdomen. Visible too, in the photo, is
the woman’s hand holding a glass filled with liquid and an olive suggestive of a martini.
An arrow emblazoned on the woman’s T-shirt is directed toward the abdomen and a
caption beneath the arrow reads: “I’m having what she’s having.” At the top of the
poster a sentence in small print says: “Protect your child from permanent mental and
physical damage by simply not drinking while pregnant.” Logos at the base of the poster
show that it is sponsored by two provincial governmental agencies, Alberta Children’s
Services and the Alberta Alcohol and Drug Abuse Commission. The poster makes
visible a dominant theme in fetal alcohol syndrome policy discourse – one that links a
mother’s behaviour with fetal harm. This government-sponsored image of a headless
woman, one that Keane (1996) calls a “malfunctioning incubator” (p. 266), conveys
nothing about the woman and the conditions and experiences of her life. As we hear more
about the diagnosis of fetal alcohol syndrome and associated government policies, it may
be helpful to retain these two images of FAS – Alice and her baby and a headless woman
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who is ostensibly giving her baby a drink – and to consider what each conveys or
obscures about the needs and experiences of women and children.
As a nurse and former FAS policy consultant in the BC government, I have been
puzzled by debates I have encountered concerning fetal alcohol syndrome – debates that
seemed to centre around those concerned primarily with children and those concerned
mainly with women’s needs. At meetings I attended with a massive provincial network
of FAS advocates, I observed intense debates about the value of and approaches to the
diagnosis and also about whether funding should be directed primarily to diagnosing
children and educating women on the dangers of alcohol consumption during pregnancy,
or to helping women through programs that could improve the conditions of their lives. I
also observed a keen interest by the provincial government in an FAS prevention
approach, captured in the common slogan, “FAS is 100% preventable”. This primary
prevention policy focus presumes that education can stop women like Alice from
drinking, and in my view, seems to displace trying to address the conditions in her life
that likely contributed to alcohol consumption in the first place.
These are the kind of debates that attract the analytic attention of institutional
ethnographers. Focused on a diagnosis and causation and what they mean for different
groups of people, the debate suggests that different ways of knowing are being applied.
There are authoritative and dissenting views. The divisions and debates emphasized for
me the relevance of the social organization of knowledge, as theorized by Dorothy Smith
(1987,1990a, 1990b, 1999). Knowledge and its particular organizational forms are
theorized and can be discovered, Smith shows, to be central to the exercise of
professional power. Indeed, Smith insists that in a 21st society like ours, knowledge
underpins the “ruling relations” through which most organisation and control is
accomplished (Campbell & Manicom, 1995). While organization and control are
essential elements of managing our everyday lives, Smith suggests that their uses are not
always beneficial, or at least not equally beneficial to all.
This research, a work-in-progress, addresses two central questions arising from
my interest the FAS and its relationship to public policy: 1) What is the diagnosis of fetal
alcohol syndrome? and 2) How is FAS conceptualized as a problem requiring
government action? For this paper, I draw on previous work including a literature review
4
of the field and some of the findings of a Health Canada funded research project and
policy analysis (Schellenberg, 2003). In the first section of this paper, I sketch the
evolution of the FAS diagnosis and trace some of the debates to show how this form of
knowledge about women and children is conceptualized and how it can be contested.
I. Contested terrain: the diagnosis of fetal alcohol syndrome
Despite over thirty years of intensive medical research and thousands of published
papers, animal dissections, and labeled children, the diagnosis and cause(s) of fetal
alcohol syndrome remains controversial. Topics of controversy can be found within the
authoritative FAS literature, pertaining mainly to differences in diagnostic approaches.
Critical writers such as Armstrong (1998, 2003), Golden (1999), and McNeil and Litt
(1992) have contested the diagnosis of fetal alcohol syndrome. For example, Armstrong
(2003) traces the historical development of FAS as a form of diagnostic expansion that
serves the moral and entrepreneurial interests of a group of American doctors. Golden
(1999) and McNeil and Litt (1992) examine elements of social construction, including
the intersections of FAS with race and class and gendered constructions of women and
mothering. In the following section, consisting of two parts, I sketch the evolution of the
FAS diagnosis and trace some of the debates.
Organizing the FAS diagnosis
Fetal alcohol syndrome first appeared in medical literature in 1968 when a French
doctor, Paul Lemoine, published the first studies he had observed in children born to
mothers described as alcoholics (Plant, 2000). In 1973, researchers Jones and Smith in
the US named the syndrome “fetal alcohol” (Roberts & Nanson, 2000). Syndromes are
“a group of symptoms and signs of disordered function related to one another by means
of some anatomic, physiologic, or biochemical peculiarity” (Armstrong, 1998, p. 2025).
Armstrong (2003) says that syndromes are often contested diagnoses. The associated
patterns of malformation that Jones and Smith identified in describing fetal alcohol
syndrome were grouped in three categories: 1) growth deficiencies such as low birth
weight, 2) morphological anomalies (mainly a distinctive set of facial features such as
short eye slits, thin upper lip, and flattened facial bone structure), and 3) central nervous
system involvement associated with a range of learning difficulties, cognitive and
behavioural problems (Plant, 2000, p. 35).
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There were several factors common to all the women in the study conducted by
Jones and Smith in 1973: - all were very heavy drinkers, poor, and part of the U.S.
welfare system, which means that the degree of social deprivation was high (Plant, 2000).
Plant observes that this aspect of an ‘identifiable’ drinking problem, found in the original
description of fetal alcohol syndrome, was ignored in years subsequent to the study (p.
35). Literally hundreds of papers have been and continue to be written in an effort to
determine just how much alcohol consumption puts a fetus at risk and more are written to
determine what those risks are. However, Plant (2000) insists that FAS has only been
found in women whose drinking can be classified as heavy or alcoholic (p. 36).
The diagnosis of fetal alcohol syndrome assumes there is a direct causal
relationship between maternal alcohol consumption and damaged babies. Alcohol is a
known teratogen, which means it can be harmful to a fetus (Population and Public Health
Branch [PPHB], 2002). Although the relationship between exposure to alcohol and fetal
harm is not clearly understood (PPHB, 2002), the connection between maternal alcohol
consumption and abnormalities in children has been specified. The authorized literature
acknowledges controversy over just how much alcohol a woman can drink before her
baby is at risk. Also controversial, are the approaches to diagnosis (Burd, Martsolf, Klug,
& Kerbeshian, 2003).
The full diagnosis of FAS required – and still requires – confirmation that the
mother had a drinking problem (Plant, 2000). Here I provide an example of how
confirmation appeared to me when I observed the diagnosis of two children over about a
5-hour period one day. The children were First Nations and fostered. In BC,
approximately 65% of children in care are First Nations children, many of whom are
known as FAS (personal communication, Ministry personnel, June 2003).
The children, a brother and sister, were brought into an examining room where a
medical expert weighed, measured, and photographed them. Earlier, in the day, other
professionals had tested them for speech, reading, and language comprehension. After
the FAS diagnostic team had collected all the bodily and psychological ‘facts’ on the
children, some of the team gathered for an interview to determine the mother’s alcohol
consumption during the two pregnancies. The subject of the interview, the mother of the
children, was absent and, in fact, deceased. The interview informants who verbally
6
provided the evidence of the deceased mother’s alcohol use were her ex-husband, a selfacknowledged alcoholic, and a white social worker that had apprehended the children.
This example provides a glimpse of how the problem of a mother’s alcohol consumption
was confirmed and then translated into evidence for diagnostic purposes. Confirmation of
maternal alcohol consumption has been a problematic issue for those who develop and
determine the diagnosis.
In 1996, in an effort to quell controversy about the indeterminate nature of the
diagnosis and to establish a more accurate set of diagnostic criteria, the United States
Institute of Medicine (1996) expanded the diagnosis of fetal alcohol syndrome to five
categories (Roberts & Nanson, 2002). The categories continue to rely on facial
characteristics, growth deficiencies, and nervous system involvement and to differentiate
between cases where maternal alcohol use or ‘exposure’ can be confirmed and those
where exposure is unclear (Roberts & Nanson, 2000). As Plant (2000) insists, the
categories, for the most part, continue to put maternal drinking clearly in the frame.
The first three categories relate to the diagnosis of FAS as follows: 1) FAS with
confirmed exposure (drinking), 2) FAS without confirmed drinking, requiring evidence
of facial dysmorphology, growth retardation and central nervous system problems2 and 3)
partial FAS (FAE)3 with confirmed drinking (Plant, 2000, p. 36). A fourth category,
alcohol related birth defects (ARBD), denotes the presence of congenital anomalies; a
fifth category, alcohol-related neuro-developmental disorders (ARND), requires a history
of confirmed exposure and central nervous system problems (Plant, 2000, p. 36; Roberts
and Nanson, 2000, pp. 49-50). In light of a diagnosis that relies heavily on the
assumption of maternal drinking, it is of interest to note the Institute of Medicine’s
(1996) assertion that “[w]hile alcohol is the necessary teratogen, it alone [my emphasis]
may not be sufficient to produce FAS in humans or birth defects in animals” (p. 20).
This view has almost consistently been disregarded in the historical descriptions,
research, and policy documents concerning FAS.
There have been a number of critics of the Institute of Medicine’s diagnostic
categories (Roberts & Nanson, 2000), among them, prominent dysmorphologists, Astley
2
Manifestations include mental retardation and/or learning disabilities (Roberts & Nanson, 2000).
The requirement here is evidence of facial dysmorphology and either growth retardation or CNS
dysfunction with confirmation of drinking.
3
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and Clarren (2001), who called it a “subjective and highly variable gestalt method” (p.
147). The diagnosis of fetal alcohol syndrome is more subjective than a condition such
as Down’s syndrome, which includes not only facial characteristics but also
chromosomal abnormalities (Armstrong, 2003) that can be identified.
The face is central in the identification of affected children, known or soon to be
known as FAS. Streissguth (1999), a prominent US-based researcher on FAS, observes
that among the range of anomalies identified under the diagnostic label of fetal alcohol
syndrome, “the face of FAS continues to be the undisputed hallmark for identification of
affected children” (p. 305). In my experience as a nurse and researcher talking with
teachers and foster parents, I have learned that children are frequently known as FAS
simply by their faces.
The problems of making a diagnosis on the basis of facial attributes are
compounded depending on the age of the child (Aase,1994). For example, growth of the
face during adolescence obscures the appearance of individuals who earlier showed FASlike facial characteristics (1994). Clinical features of FAS are not discrete abnormalities
and may conform to normal variations in an individual’s racial group or family (1994).
Abel (1995), also a prominent FAS expert, refers to the importance of the face and
ethnicity as a confounder in making his observation that the “most critical determinant
for the presence of FAS continues to be the country in which the study is conducted” (p.
439). Abel (1995) attributes these differences4 to a “tendency on the part of
diagnosticians to base their diagnosis of FAS on some ethnic facial feature” which, he
suggests, is actually a normal variant within a particular ethnic group (p. 439).
Nonetheless, contradictions arising from a diagnosis that relies on the face as the
hallmark of identification (Streissguth, 1999) have not been, for the most part, addressed
nor have the implications of racial stereotyping of First Nations populations scrutinized
by FAS researchers.
My understanding is that this visual means of identifying children does not
enlarge our understanding of their problems with learning, memory, and social
interactions. Such problems can better be understood through other means such as
4
In a survey conducted in the 1990s, the incidence of FAS in the US was 1.95 per 1,000 (91 out of 46,497
people) compared to 0.08 per 1,000 (4 out of 51,079) for other countries (1994, p. 439).
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educational assessments and the descriptions and experiences of children, parents, and
teachers. Mary Hepburn, a researcher in Scotland where, apparently, few cases of FAS
have been identified, asks: “Why label children FAS anyway? We prefer to work with
mothers and children and address their individual needs” (personal communication,
October 2002). Despite the varying approaches and controversies, the trend toward
‘improving’ diagnostic capability and training expert diagnosticians continues in Canada
and the US.
In a recent effort to provide more diagnostic precision, US clinicians, Astley and
Clarren, have developed a new four digit diagnostic code (Roberts & Nanson, 2000). The
system uses the numbers 1 to 4 to “convey the magnitude of expression5 (or variability,
my emphasis) in each of the four diagnostic domains” – the above three plus alcohol
exposure – “and yielding 256 (my emphasis) possible four digit diagnostic codes and
corresponding clinical names” (2000, p. 50) in about 6 pages.
Figure 1 [OVERHEAD]
From: University of Washington (1999). Diagnosis of individuals with prenatal
exposure to alcohol: The 4-Digit Diagnostic Code. Seattle: University of Washington.
As an institutional ethnographer, I begin to worry about the numerical product
and its relation to any actuality. A body of literature in the social organization of
5
The magnitude of expression of each feature is ranked independently on a four-point Likert
scale with 1 reflecting complete absence of the FAS feature and 4 reflecting a strong 'classic'
presence of the FAS feature (Astley & Clarren, 2000).
9
knowledge reminds me of the prevalence of ideologically constructed knowledge. How
the descriptors of FAS are tied to the phenomenon is a topic for inquiry in the social
organization of knowledge. Yet, even if the connection is tenuous between actual
mothers and children, and the numbers representing an expression of the syndrome, the
numbers and codes carry weight.
Recently, researchers in the US have developed a new non-diagnostic term, Fetal
Alcohol Spectrum Disorder (FASD), to incorporate fetal alcohol syndrome, fetal alcohol
effects, and other alcohol related birth defects (Roberts & Nanson, 2000). The 4 digit
diagnostic code has become part of the BC government’s province wide FASD strategy
(Ministry of Children and Family Development, 2003). Here, we see the importance of
numbers in the citation of statistics concerning the scope and presumed cost of the FAS
problem. Statistics ranging from 1/1000 live births for FAS to now 1/100 for FASD,
combined with estimates – ranging from 1 to 2 million dollars on the cost of supporting
an individual with FAS over a lifetime (2003) -- make a compelling argument to
governments and other funders to take action.
Streissguth (2001), a prominent FAS researcher, states that all FAS diagnostic
systems require the knowledge that “the mother had significant alcohol problems at the
time of pregnancy” (p. 305). Here in this new four digit code is a new elaborate
diagnostic system that continues to premise a mother’s consumption of alcohol as the
cause of her child’s problems. I argue that framing the problem as a more elaborate
medical one is useful evidence for those who hold women responsible for children’s
problems. In my view, according to the diagnosis it is women’s behaviours rather than
social, environmental, and economic factors relevant to causation need to be managed.
I now examine knowledge about the cause of FAS because it is this knowledge,
implicit in the diagnosis that is, I believe, central to not only how women are known
through the diagnosis, but also how women are known through FAS prevention policy as
it is being framed in Canada.
Contesting ‘cause’
There is a common assertion found in the research literature (for example, Society
of Special Needs Adoptive Parents, 1998; Streissguth, 1999; Astley, Bailey, Talbot, &
Clarren, 2000; Astley & Clarren, 2001) that FAS is caused by maternal alcohol
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consumption. Since the 1970s there have been literally thousands of papers examining
the effects of alcohol exposure in animals, describing mechanisms for prevention,
treatment, and screening, and elaborating diagnostic criteria6. Although the authorized
literature acknowledges that the FAS diagnosis is contentious, the argument has been
made that new technologies are needed to provide better tools for diagnosis. More
recently, however, some researchers have begun to question taken for granted
assumptions concerning etiology or ‘cause’. The following literature overviews
emerging critique including some questions arising within authorized research.
There is a growing body of research to suggest that there are other factors, such as
nutrition, maternal health, paternal alcohol use, and genetic susceptibility, which, like
alcohol, may be associated with FAS (Plant, 1985; Plant, 2000; Cicero, 1994; Armstrong
& Abel, 2000; Moyers & Bailey, 2001). For example, research shows that orofacial
clefts are strongly associated with maternal alcohol consumption and that poor folate
status is also associated with high alcohol consumption (Moyers & Bailey, 2001), thereby
suggesting that the deficiency of nutrients such as folate may also be implicated in FAS.
Researchers also suggest that differences in birth defect risk associated with folate intake
or metabolism are likely interrelated with multiple components including nutrients,
genes, and enzymes (Moyers & Bailey, 2001).
Another area of investigation is the connection between the hormonal systems of
mother and fetus and normal fetal development (Gabriel, Hofmann, Glavas, & Weinberg,
1998). Cicero (1994) asserts that paternal alcohol consumption may affect the fetus
through a direct effect on the father’s sperm or reproductive organs (p. 37). Risks
associated with paternal alcohol consumption have received little attention, which, Cicero
(1994) observes is surprising in light of studies (see Plant, 2000) suggesting behavioural
and intellectual impairments in the male offspring of alcoholic fathers.
A host of factors other than alcohol consumption may contribute to
neurodevelopmental problems, low birth weight, and even FAS-like phenotypes in
children. For example, Aase (1994) observes that an important consideration in
establishing the diagnosis is “the normal variation of features in the patient’s racial group
6
The DSM IV (Diagnostic and Statistical Manual, 4th ed., 1994) does not mention FAS. However,
according to International Classification of Disease, 9th revision, originally published by the World
Health Organization (WHO), FAS is a medical diagnosis with Code # 760.71.
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or family”, common in many Native American groups (p. 8). Aase (1994) also
acknowledges that it is impossible to prove that the abnormalities of mental deficit,
growth delay, and maladaptive behaviour in any one child were the result of prenatal
alcohol exposure since “none of the abnormalities found in FAS is specific to that
diagnosis” (p.10). This is an astounding assertion by an FAS researcher who seems to be
acknowledging the problematic nature of the FAS field. Diagnostic measures for FAS,
such as low birth weight and impaired learning and development, are associated with a
variety of factors other than alcohol, most notably with poor nutrition and smoking.
These areas of research are raising important considerations for understanding FAS and
they depart from the authorized approach to knowing about what “causes” it. Each of
these factors is in itself a risk factor for poor pregnancy outcome and some researchers
(Day, 1995) insist that they must be considered if we are to understand these children’s
needs and attend to both women’s and children’s health. Armstrong (2003) suggests that
in an effort to address the problematic nature of the diagnostic approach, FAS experts
have also developed over a period of time a range of new symptoms and children’s
problems such as hyperactivity, understood by some to be associated with the syndrome.
An extensive area of FAS research has developed around just how much alcohol
women can drink, or should be allowed to, before their behaviour becomes a risk that
must be managed and controlled. Yet, to date, there is no clear correlation between the
amount and timing of alcohol consumption and the effects of alcohol use in pregnancy
(Armstrong & Abel, 2000; Roberts & Nanson, 2000). Research findings show that even
among women who are chronically heavy drinkers, only some women will have a baby
with FAS (Armstrong, 1998; Roberts & Nanson, 2000). Newborns “can have blood
alcohol levels high enough to affect acutely their central nervous system function and not
have FAS” (Institute of Medicine, 1996, p. 19). Contrary to popular slogans, “FAS is not
a drunk baby” (1996, p. 19). A meta-analysis involving over 130,000 pregnancies
suggests that consuming two to 14 drinks per week does not increase the risk of giving
birth to a child with either malformations or fetal alcohol syndrome (Polygenus et al,
1998, cited in Hanson, 1997 –2004). Armstrong and Abel (2000) argue that, contrary to
popular messages that FAS is a threat to all pregnancies, it occurs predominantly among
poverty stricken women. What women in poverty have in common is that they
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experience or are characterized by factors such as smoking and poor diet (2000). If
alcohol consumption were the “cause” of FAS, then surely every woman would be at risk
of having an affected child (Armstrong, 1998). This has not been shown to be the case
(Armstrong & Abel, 2000) yet, for the most part, the policy prevention focus is largely on
a single presumed cause – women’s use of alcohol and how to stop it. In the next section,
I provide some examples to show how FAS is being conceptualized in public policy.
Policies of prevention
Campbell (2000) asserts that the way a problem is defined and talked about
matters for the type of policy that is considered. She argues that “if the source of harm is
located in individual behaviour, the larger social patterns and structures in which the
behaviour is situated do not come under scrutiny” (p. 42). As you listen to the following
excerpt from a speech delivered in Parliament, notice the discourse on harm and the
particular view of women and children that the discourse conveys.
The excerpt from this speech by federal MP Grant Hill concerns a long-standing
debate in Canada on the need for legislation aimed at preventing FAS by placing warning
labels on alcohol containers.
Mr. Speaker, a pregnant woman who drinks alcohol to excess can permanently
harm her baby. Fetal alcohol syndrome and fetal alcohol effect today are well
understood by scientists and health care workers. Learning is blunted. Many
youth so afflicted are antisocial. A significant number of people who commit
crimes are FAS youth. Many women have no idea about the difficulties alcohol
can cause to infants in the womb. One way to educate the public would be to label
alcoholic beverages. A graphic label showing a pregnant woman in profile with
an x across her would be a warning even for illiterate Canadians to be cautious.
The recent murder of little Jessica Russell in B.C. by an alleged FAS victim
should be a clear reminder to all brewers and distillers that they have a
responsibility to act voluntarily to educate and prevent fetal alcohol syndrome
(Canada, 2000).
In contrast to a diagnosis that actually allows for and is based on wide variability as you
saw earlier, here FAS is presented as if there were little or no variation among the
children and adults so affected. The speaker conveys a perception of not only harm
fostered by women who drink but also harm fostered by those affected – the worst kind
of harm – the murder of an innocent child. This kind of harm, the speaker would have us
believe, is the result of women drinking during pregnancy. This is strong stuff for public
13
consumption. No one is advocating alcohol use during pregnancy. For the most part,
however, women’s drinking and FAS are constructed in terms of fetal and social risk,
with little attention to the multiple factors previously mentioned or to the harm that
occurs to women and children through this construction. Social programs, housing, job
skills, harm reduction, and other approaches that might improve the health and well being
of women, with positive impacts also for their children, are generally not well funded.
The notion of harm due to FAS has infected not only the social domain, but also
apparently poses a threat to public health. In 1992, as a government response to the
release of a report called Foetal Alcohol Syndrome: A Preventable Tragedy (Greene &
Wilbee, 1992), Health and Welfare Canada (1992) sponsored a National symposium on
FAS and fetal alcohol effects. In the opening plenary, Dr. Geoffrey Robinson began his
address by referring to the “epidemic of FAS in this country…” (p. 10).
Since that time there has been a rapidly growing discourse on mothers’ drinking
and fetal harm, often framed as a “preventable tragedy” (Loney, Green, & Nanson, 1994,
July/August). In the 2001 Speech from the Throne, the government identified plans and
funds ($11 million) to reduce the incidence of fetal alcohol syndrome and specifically in
Aboriginal populations by the end of the decade (Canada, 2001). LaBerge (2000) asserts
that “FAS disproportionately materializes in bodies that are First Nations, poor, adopted,
and fostered” (p. 18). In a contrasting view featured in a 2 page spread of a national
newspaper, a journalist in discussion with prominent FAS researchers, suggests that FAS
is now [also] a middle class epidemic (Philp, 2003).
Armstrong and Abel (2000) have remarked on the discourse in which FAS is
perceived as a threat to all pregnancies. They describe this kind of discourse as a form of
democratization, whereby “the essential criterion for any social problem is its
universalization” (2000, p. 279). Democratization, they argue, is particularly important in
FAS, which is not an “equal opportunity disorder” (p. 279). Instead FAS is:
typically scaled up into middle and affluent classes to draw attention to the
problem at hand and to overcome any charges of racism, classism, elitism, or any
other accusation of discrimination (Wagner cited in Abel & Armstrong, 2000, p.
279).
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In the space of just over a decade, the problem called FAS can be billed, not only
as an epidemic, but also, I would argue, as a multi-million dollar industry visible in
public policy platforms, Throne speeches, provincial platforms, municipal by-laws,
internet list serves, and private agencies dedicated to expensive diagnoses. It is beyond
the scope of this paper to trace how or why all this has happened. Writers such as Karen
Swift (1995) and Ann Oakley (1984) have examined historical-cultural representations of
women/mothers and social constructions of mothering. Susan Boyd’s (1999) work also
offers insights by tracing the prominent role that United States (US) federal drug policies
play in shaping Canadian policies. While the issue of FAS was just emerging in Canada,
the US media was featuring highly prominent coverage on prenatal substance use among
African-American and First Nations mothers (Golden, 1999) and developing policies
aimed at FAS prevention.
Freeman (1992) problematizes the “idea of prevention” as one that is widespread
and taken for granted in social policy. Freeman argues that contradictory approaches that
fall under the discourse of prevention reflect how the “relative interests of the individual
and the group” are “ultimately political, ideological rather than ‘scientific’” (p. 36).
“Prevention occupies an uncomfortable position at the intersection of social and medical
science” (p. 37) and is directed at managing or controlling social problems, rather than
eliminating them.
In an effort to manage, control, or prevent the social problem of alcohol
consumption, many states have passed laws that require liquor outlets to post warnings to
pregnant women about the risks of FAS and FAE (Paltrow & Tracy, 2000). The US is the
only federal jurisdiction in the world to legislate warning labels on alcohol beverage
containers (Abel & Armstrong, p. 280). However, there are strong lobby groups and
prevention policies in place in many parts of Canada, including by-laws in some
jurisdictions that require public bars to warn women of the dangers of drinking. These
approaches to selectively managing a problem are concerning to many feminist groups as
they draws attention to women’s behaviour rather than to the context of social
deprivation in which substance use by women and men often occurs.
For some US researchers, primary prevention refers not only to preventing
alcohol consumption but also to “avoiding the birth of children likely to be damaged by
15
prenatal alcohol exposure” (Astley, Bailey, Talbot, & Clarren, 2000, p. 499). Prevention,
it appears, is also the new risk management measure for regulating and controlling
women’s reproduction. Some who promote these measures assert that “surveillance be
done accurately enough to monitor the success of prevention efforts” (2000, p. 500).
Surveillance often takes the form of coercive child welfare strategies that “extract the
mother’s compliance” (Campbell, 2000, p. 181). In some states, people have been
making citizens’ arrests of pregnant women found to be drinking and in some instances,
authorities are arresting pregnant women for drinking (McNeil & Litt, 1992). Researchers
in Canada and the US are developing new technologies of prevention through the
evaluation of women’s hair samples and monitoring of body fluids and products to aid in
early diagnosis and intervention. In British Columbia, a least one FAS expert has talked
about expanding the already complex 4 digit diagnostic code to a 6 digit code that will
incorporate the social and environmental conditions of the woman’s life. We must ask:
whose interests will these forms of objective, encoded, medical knowledge about women
serve?
In this paper, I have introduced some of the knowledge debates on the diagnosis
of fetal alcohol syndrome and raised questions that challenge common understandings of
fetal harm. These knowledge debates direct attention to the particular ways in which the
problems of women and children are discursively framed, how women are captured and
held accountable within those frames, and how medical knowledge and diagnostic
categories objectify and lose the experiences of women and children and the conditions in
which they live their lives.
One of my goals has also been to inquire into how medical knowledge as a
diagnosis and form of evidence is conceptualized in public policy. Policies appear to be
simply collections of information intended to guide direction toward a specified outcome,
however, this research suggests they are much more “active” than that. Policies create a
particular way of knowing women and children. We have seen in the visual
representation of policy and heard in speeches and other examples, how policies on FAS
obscure the needs, circumstances, and experiences of women’s and children’s lives.
The medical diagnosis of fetal alcohol syndrome appears as fact-based
authoritative evidence that provides a particular way of knowing women and their
16
children. However, this way of knowing obscures the poverty, violence, and abuse of
women of colour, who disproportionately are the subjects of FAS research and the
objects of the diagnosis. It directs our attention to a specific cause, alcohol consumption.
This presumed cause of harm to children becomes a rallying call for advocates,
increasingly those focused on child development, fetal harm, and fetal rights. My own
research goal is to contest the socially organised nature of biomedical knowledge,
knowledge that we assume to be factual. It is my contention that the help women like
Alice and their children require will become more apparent and equitable through policy
approaches that begin, not with medical ‘facts’, but with women’s and children’s
experiences.
17
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