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Article Society
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ª The Author(s) 2019
Risk and the Spectral Article reuse guidelines:
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Politics of Disability DOI: 10.1177/1357034X19857138
journals.sagepub.com/home/bod

Kelly Fritsch
Carleton University

Anne McGuire
University of Toronto

Abstract
Drawing on the institutional history of the sperm bank and legacies of eugenics, we
consider how spectrums of risk simultaneously constrain and expand possibilities
for disability justice. We do so by examining the discourses surrounding US-based
Xytex Corporation sperm bank Donor 9623, described as the ‘perfect’ donor but
later discovered to have a criminal record and a diagnosis of schizophrenia.
Haunted by the dread of disability, we examine how parents mark the fate of their
donor-conceived child on a graded spectrum of genetic and psychiatric risk, in need
of perpetual monitoring and intervention. Using this case to understand the con-
temporary reorganization of disability via spectral risk, we advocate for a critical
engagement with how disability haunting can enable us to better attend to the
effects of the past and present in such a way that provokes a more collectively
just future.

Keywords
dimensional psychiatry, disability, genetics, haunting, risk, schizophrenia, spectrum,
sperm bank

Introduction
In April 2016, the New York Times reported the story of Angela
Collins and her partner Elizabeth Hanson, who had conceived their
son with the help of Xytex Corporation, a sperm bank in Atlanta,
Georgia. They chose Donor 9623 – who they now know to be Chris
Aggeles – an apparently healthy, middle-class White man, described

Corresponding author: Kelly Fritsch. Email: KellyFritsch@cunet.carleton.ca

Extra material: http://theoryculturesociety.org
2 Body & Society XX(X)

by Xytex as ‘among their best donors’. According to his profile,

Donor 9623 had an IQ of 160, spoke four languages, was a talented
drummer, had a Master’s degree in artificial intelligence and was
working towards his PhD in neuroscience engineering (Dyer, 2015:
2001; Hauser, 2016; Van Dusen, 2018). Aggeles earned US$16,000
by selling his sperm to Xytex between 2000 and 2014, leading to the
creation of 36 children for 26 different families (Boyle, 2016; Van
Dusen, 2018). About 7 years after the birth of their son, following a
confidentiality breach by Xytex, Hanson learned that the sperm bank
and Donor 9623 had omitted information from his profile, including
facts about his appearance, background and medical history. Google
searches and reviews of various social media sites revealed Aggeles
had dropped out of college, had struggled to hold down jobs, had
been arrested for disorderly conduct, breaking into a home, trespas-
sing and driving under the influence. Collins also determined that
Aggeles had been hospitalized numerous times, receiving psychiatric
diagnoses of bipolar and narcissistic personality disorders in addition
to schizophrenia.
Upon uncovering this information, Collins and Hanson filed a
lawsuit against the sperm bank, the donor and a number of named
and unnamed Xytex Corporation employees, ‘alleging fraud, negli-
gent misrepresentation, breach of warranty, and unfair business prac-
tices’ (Dyer, 2015: 2001). While their son is ‘happy and healthy’,
does well in school and is ‘musically gifted’, Collins continues to
worry that he is ‘potentially facing a very debilitating lifestyle’
(Boyle, 2016). Collins has told her son that the man who helped
create him had ‘something wrong with his brain’, leading her son
to ask ‘am I OK?’ ‘You are fine right now’, Collins is reported to
have said in response (Boyle, 2016). Despite their son being ‘fine
right now’, Hanson and Collins nonetheless sought damages, as well
as a ‘medical monitoring fund’ for the donor-conceived child in light
of his increased genetic risk. The fund would cover the cost of
ongoing evaluation for early signs of mental illness as well as pre-
ventative or future psychiatric treatment (Dyer, 2015: 2001). ‘We
know nobody is perfect, but we didn’t sign up to choose knowingly
that our donor had schizophrenia’, Collins said in a 2016 radio inter-
view with the Canada Broadcasting Corporation (CBC). Collins and
Hanson’s assertion that they would not have knowingly used a donor
with a history of mental illness most obviously conjures up eugenic
Fritsch and McGuire 3

notions of risky genetics that continue to inflect contemporary under-

standings of embodied difference, marking social inequalities as being
produced by underlying genetic biological abnormalities that can be
medicalized, monitored and proactively guarded against. In this arti-
cle, we track this legacy of eugenics from the institutional creation of
the sperm bank through to the case of Donor 9623. In particular, we
attend to the ways in which contemporary discourses of medicalization
have shifted from a focus on ostensibly clear-cut categories of genetic
deviance and pathology to spectrums of susceptibility that entrench
risk at all levels of life, simultaneously constraining and expanding
possibilities for disability justice.
Being ‘fine right now’ marks the fate of Collins and Hanson’s son
as not fully biologically determined but rather as a risky social–
biological possibility. This perspective echoes studies in psychology
and neurogenetics, which have, for decades, shown that differences
like schizophrenia are co-constituted by our biology and by our
social, cultural, political and economic environments (Boyle, 2002;
Geekie and Read, 2009). Phenotypic expression is shaped not simply
by biology (e.g. DNA sequences or mutations) but by our relations
and conditions of living (e.g. generational histories, environmental
exposures and/or personal experiences of abuse, trauma or oppres-
sion) (Blackman, 2015, 2016; Weasel, 2016). This evidence offers
feminist and disability scholars and activists a robust opening
through which we can push for the creation of more equitable struc-
tures, institutions and relations: environments that can support more
just ways of living with and across differences of the mind and body.
Yet, more often than not, contemporary mobilizations of genetic
risk are thoroughly medicalized, thereby reproducing a focus on
personal health responsibility and on individualized (and often pri-
vatized) solutions. This is certainly the case with Collins and Han-
son’s child, whose risk is interpreted as existing along a personalized
spectrum of possibilities which anticipate the need for extensive and
ongoing monitoring and intervention. At this juncture, risk is invoked
as a way to continuously medically manage genetic expression away
from disability that is always and forever poised on the horizon.
What is more, the very notion of genetic risk is amplified precisely
because this risk exists on a spectrum, a fluid and shifting scale of
infinite gradations of severity that not only determines who we are
now but who and what we might become. This approach leaves us
4 Body & Society XX(X)

wading through a field of projected potential risks to our present-day

health and future outcomes or to the health and outcomes of our
actual or hypothetical offspring. In this way, the spectrum is also
spectral: disability as an object of dread haunts the present through
anxieties about a past that threatens to taint, or even become, the
future. Trauma, toxic exposure, historical and interpersonal violence
and oppression; marking the bodies of the past, haunting futures yet-
to-come.
According to the Oxford English Dictionary (2018), spectrum as a
noun refers to an ‘apparition or phantom’ as well as ‘the entire range
or extent of something, arranged by degree, quality’. Spectre simi-
larly refers to an apparition, phantom or ghost, especially ‘one of a
terrifying nature’ while also referring to ‘an object or source of dread
or terror’. The etymology of spectrum and spectre both derive from
the Latin specĕre meaning ‘to look’ or ‘see’. Thus, spectre as ‘an
object of dread’ might be understood as a kind of frame or lens
through which we see or experience the world. Gleaned through the
discourse of risk, disability as a graded range of potential intensities
or severities becomes a ghost that is haunting embodiment, one that
must be continually guarded against.
The spectralization of disability – or the idea that disability is not a
singular ontological trait or category of being but is rather a graded,
tenuous and flexible state of becoming – is not limited to the realm of
genetics. Ideas about continuums of disability/nondisability and/or
graded scales of normalcy/abnormalcy reverberate at the cultural
level both producing and constraining particular understandings of
embodied risk. For example, everyday observations like ‘aren’t we
all a little autistic’, ‘she’s got a touch of OCD’ or ‘there’s no such
thing as normal’ circulate ubiquitously through contemporary West-
ern culture. We also find traces of the spectral within our own home
of disability studies and activism. Here, the non-normative body-
mind is politicized precisely through the understanding that disability
is an always-changing relation between body and environment.
Notions like ‘temporarily abled-bodied’ or ‘misfit’ and concepts like
‘chronicity’, ‘neurodiversity’ or ‘capacity’ and ‘debility’ mark dis-
ability not as a concrete thing that inheres within an individual bio-
logical body or mind, but rather as a relation, a biosocial gradation of
difference (Fritsch, 2015a, 2016). Such conceptual frameworks –
which name ability as fluid, plastic, changing, context-dependent,
Fritsch and McGuire 5

historically arising, contingent, forever shifting the terrain between

normal and abnormal – importantly provide the means for marking
out the differential (and often unjust) structural conditions under
which disability is produced. They also enable generative explora-
tions of the ‘difference disability makes’, thereby opening up new
possibilities for ‘desiring disability differently’ (Fritsch, 2015b;
Michalko, 2002).
This article seeks to better understand how concepts and categories
of disability are being reorganized as risk is mapped onto a spectrum.
Whether emanating from the realm of biomedical diagnosis, popular
culture, critical scholarship or activism, the trouble with the spectral
lies in the ways in which it upholds disability (or a more severe or
intense form of disability) as an object of dread. Through the case of
Donor 9623, we show how the relational possibility of disability risk
is obscured as risk becomes individualized, treatment customizable
and surveillance, by necessity, perpetual. Too often, notions of spec-
tral risk haunted by disability dread fail to substantively alter material
social or structural inequities towards disability justice. Yet, can a
disability haunting enable us to better attend to and grapple with the
effects of the past and present in such a way that provokes a different,
more collectively just, future? Turning towards the trouble of the
spectrum, we find that the risk of disability (or a new or more severe
gradation of disability) is always looming around the corner or
maybe it has already arrived but not yet made its presence known.
Yet, perhaps, it is always arriving anew, in the ways by which it
cannot be simply located in a unified body, marked by a precise site
or time, or even by stable unique indicators. Here, instead, we find
disability as spectral risk, at once inhering in a body and not, full of
danger and possibility. We turn now to a closer consideration of the
case of Donor 9623 and to the historical legacies and scientific per-
spectives that underpin and inform this case. In doing so, we advo-
cate for a critical engagement with the spectralization of risk and
disability as it relates to disability politics and to the study of dis-
ability, health and embodiment more generally.

Managing Genetic Health and Risk at the Sperm Bank

The case of Donor 9623 turns on eugenic understandings of risky
biological inheritances. Collins’ and Hanson’s lawsuit against Xytex
6 Body & Society XX(X)

alleges that the corporation sold the plaintiffs a ‘defective and

unsafe’ sperm product (Doe v. Xytex Corp, 2017), a product, it is
assumed, that plays a key role in determining the future outlook and
life chances of the biological offspring it helped to create. ‘The
concerns we have about our son’s future are related directly to the
donor’s genetics’ says plaintiff Collins in an interview with the
Toronto Star.
He [donor Aggeles] has some serious debilitating mental health issues
that, you know, if our son was to develop those into puberty and into
early adulthood he might end up having a life not unlike our
donor . . . it took him [Aggeles] 20 years to get his bachelor’s, he
struggled keeping a job, was in and out of jail, in and out of psych
wards. This isn’t exactly what we had signed up for. (Boyle, 2016)

Biology anticipates the future, alleges Collins. She continues by

describing how risky genetics (e.g. as is suggested by a familial
history of mental illness diagnoses) can lead to equally risky futures,
both biological (e.g. disability/illness) and social (e.g. criminality,
truancy, delinquency). Thus, a core assumption at the heart of the
case against Xytex is that donors with traits or characteristics deemed
‘undesirable’ cannot possibly produce ‘safe’ or ‘reproductive grade’
sperm and that this is true whether the donor traits or characteristics
in question are understood to be heritable (e.g. schizophrenia) or not
(e.g. history of incarceration, educational background, employment
status). The answer to the question of whether a donor with such
medically and socially undesirable traits is fit to reproduce is a
resounding ‘no’, one that, it would seem, has been agreed upon by
everyone in advance.
Disability studies scholarship contests this collective assumption
of agreement, demonstrating that public discussions of ‘defective’
genes, adverse traits, risky biology or reproductive fitness are neither
self-evident nor objective. Indeed, as Robert McRuer notes, the see-
mingly unshakable idea that ‘abled-bodied identities, able-bodied
perspectives are preferable and what we all, collectively, are aiming
for’ is a defining feature of a system of compulsory able-bodiedness
(2006: 9). Alison Kafer’s work on reproductive futurity moreover
marks the material and ethical importance of imagining disability (or
otherwise non-normative) futures. ‘These stories deserve telling’
writes Kafer, ‘and the issues they raise demand debate and dissent’
Fritsch and McGuire 7

(2013: 85). With these critiques in mind, it becomes necessary to

historicize the case of donor 9623 and its assumption of agreement
about good inheritances and good futures. For the remainder of this
section, we consider the ways eugenic thinking has and continues to
underpin social and scientific ideas and practices of assisted repro-
duction, from the binary notions of superior and inferior heredities
endemic to the 19th- and 20th-century practices of artificial insemi-
nation and cryopreservation to the 21st-century notions of spectral
risk that are driving the contemporary gamete industry and the case
of Donor 9623. We offer an historical account of the phenomenon of
assisted reproduction with donor sperm to show how this practice
has, since its inception, been haunted by the dread of disability, while
also drawing attention to how social and scientific anxieties about
risk have adjusted with changing times.
The rise of assisted reproduction – which includes the contem-
porary phenomenon of the for-profit sperm bank – has long shaped
novel understandings about the purpose and function of human
procreation. As both a concept and a practice, artificial insemina-
tion with donor sperm is inseparable from a eugenic history focused
on human improvement and social betterment (Daniels and Golden,
2004; Swanson, 2012). Indeed, the first use of donor sperm in the
United States is thought to have occurred in the late 19th century at
the hands of Philadelphia physician Dr William Pancoast who, after
confirming the infertility of one of his male patients, chloroformed
and artificially inseminated the man’s unwitting wife with sperm
donated by the ‘best looking member’ of his medical class (Daniels
and Golden, 2004). As artificial insemination with donor sperm
became more common in the 1920s, 1930s and 1940s, careful atten-
tion was paid to finding donors who either matched or ‘exceeded’
the recipient family’s race, class, temperament and accomplish-
ments (Daniels and Golden, 2004). Reflecting the presiding social
and scientific ideology of the time, a 1934 article in Scientific
American called babies produced via well-suited donor sperm
‘Babies by Scientific Selection’, hailing this kind of controlled
reproduction as ‘one of the most significant eugenic developments
in the history of man’ (cited in Swanson, 2012: 244–245). For many
scientists and medical practitioners in the early decades of the
20th century, donor insemination represented ‘an exciting technol-
ogy that offered not only hope for the involuntarily childless but
8 Body & Society XX(X)

also the possibility of improving the human race through selective

breeding’ (Swanson, 2012: 246).
If formal, state-sanctioned eugenic practices dwindled in popular-
ity following the atrocities of the Second World War, artificial inse-
mination with donor sperm continued to be a source of scientific
optimism about human improvement, as well as a source of anxiety
about human degeneration. In Iowa in the early 1950s, zoologist
Jerome Sherman and urologist Raymond Bunge successfully insemi-
nated four women using donor sperm that had been previously frozen
and stored. Bunge expressed the viability of this reproductive
approach by way of appeal to a lingering eugenic sentimentality.
‘[T]his [research] has tremendous implications, both philosophical
and clinical’ Bunge wrote in a 1953 letter to his mentor, just as the
first of the successful pregnancies by frozen sperm were confirmed.
He continued: ‘the spermatozoa of great men can be preserved for
long periods of time and perhaps a race of superior individuals can be
ultimately expected’ (Swanson, 2012: 255). Bunge’s optimism for
species improvement was not universally embraced, however, or at
least not yet. This new-found capacity to collect and preserve human
sperm for the purposes of human reproduction stoked concerns with
the scientific community over the viability and, ultimately, the ‘qual-
ity’ of the offspring produced. For example, the editors of Science
would not publish Sherman and Bunge’s research on sperm freezing
until ‘the products of the conception have been observed’ (Swanson,
2012: 258). Such concerns over ‘product quality’ were heightened in
1954 when the first of the babies created as a result of artificial
insemination with frozen sperm was born blind and prone to seizures.
And concerns over disability risk continued to linger even after the
baby’s impairments were found to be unrelated to her ‘materials of
conception’ and subsequent babies born from frozen sperm were
described as ‘normal’ (Swanson, 2012: 266).
Haunted by the dread of disability, the legitimacy of the sperm
bank has long been, and continues to be, made contingent upon both
the health and normalcy of the offspring it produces. This is also
evident as we look to early justifications for the organized establish-
ment and widespread use of sperm cryopreservation. For example, in
a 1977 article published in the Journal of Urology, Witherington
et al. describe how the freezing process provides the ideal conditions
to select against ‘abnormal’ sperm. ‘Only the fit and healthy sperm
Fritsch and McGuire 9

survive [freezing]’ write Witherington et al., a process they claim

lowers the rate of ‘birth defects’ and increases the likelihood of
birthing ‘good babies’ (1977: 510).
Tensions between reproductive normalcy and risk are made all the
more explicit with the widespread commercialization of the sperm
bank (Daniels and Golden, 2004). While the first for-profit banks
started to appear in the United States in the early 70s, the industry
did not reach its stride until the late 1980s when the emergence of
the AIDS epidemic stoked fears about the use of fresh semen and
prompted more careful quarantine and screening procedures
(Daniels and Golden, 2004; Mamo, 2005; Swanson, 2012). All of
a sudden, there was a greater need for oversight: for risk analysis and
management, for testing and retesting donor samples over time.
These conditions nurtured the emergence of the contemporary
sperm industry. Cryobanks started to market themselves not only
as the safest option from a health and safety standpoint when it came
to assisted reproduction but also as a less risky option when it came
to creating future offspring.
The contemporary multi-billion-dollar gamete industry is driven by
ideals of health management and risk minimization (Mamo, 2005).
These organizations range from (rare) non-profit institutions focused
on improving access to safe reproductive services (e.g. The Sperm
Bank of California in Berkeley) to a wide range of upscale private
enterprises. Some banks offer consultations with prospective parents
in a physical office space, while others operate predominantly online
(i.e. ‘mail order sperm’); some entice recipient parents with possibil-
ity of ‘exclusive’ donor sperm (i.e. donor sperm is only used to create
one offspring or a limited run of offspring) or the ability to match
donors with photographs of the prospective parents or even a good-
looking celebrity (Daniels and Golden, 2004; Mamo, 2005; Swanson,
2012). Others still market themselves on the basis of unique or spe-
cialized sperm donors (e.g. the now shuttered Repository for Germ-
inal Choice, which trafficked solely in the gametes of ‘extraordinary
men’ – from Nobel Laureates to Olympic athletes) (Escobedo, 2014).
Sperm banks are united, however, insofar as they all have adopted a
model of consumer choice when it comes to gamete selection. Pro-
spective parents select reproductive biomaterial – donor semen – on
the basis of donor traits and characteristics deemed socially and medi-
cally desirable. Consumers can search through reams of donor
10 Body & Society XX(X)

information, narrowing down their selection on the basis of, for exam-
ple, race, ethnicity, religion, eye colour, skin tone, hair colour or
texture, height, weight or blood type, education level, SAT scores,
talents, hobbies, astrological sign and/or general appearance (Bokek-
Cohen, 2015; Daniels and Golden, 2004; Mamo, 2005).
Virtually all contemporary North American sperm banks offer
some kind of screening prior to accepting donations. For example,
Xytex – the sperm bank involved in the Donor 9623 case – requires
the donor candidate to provide a personal and family medical history,
submit to a personality assessment interview, have a thorough phys-
ical exam and provide semen, blood and urine samples for prelimi-
nary analysis (Xytex, 2018). As contemporary commercialized sperm
banks advertise themselves by – and derive profit from – the per-
ceived calibre of their donors and the quality of their sperm products,
these screening processes are governed by health and safety regula-
tions as well as sociocultural norms. And so, despite the seemingly
boundless field of choice when it comes to donor selection, there are,
nonetheless, very clear limits placed on the range of possible choices
to be made by prospective parents/consumers. Many donor traits –
both heritable and not – remain essentially ‘unchoosable’ for sperm
bank consumers. Daniels and Golden (2004) argue that commercial
ideals of donor sperm align with Western cultural ideals of masculi-
nity and other normative standards of human behaviour and embodi-
ment. For example, men ‘under 5’8’ [are] rejected out of hand by
most sperm banks’ and many banks do not accept semen from gay
men (Daniels and Golden, 2004: 19). Kafer (2013) resonantly
describes the controversy faced by a Deaf American lesbian couple
who encountered institutional resistance and public scrutiny when
seeking a donor with congenital deafness. Clearly, as Laura Mamo
(2005) observes, ‘the product stored and invested at these banks is not
a neutral biomaterial available for purchase, but is imbued with cer-
tain qualities that affect its value’ (Mamo, 2005: 244).
A technoscientific institution as well as a set of practices, the
sperm bank braids together idea(l)s of human genetics and biology
with capitalist understandings of choice, investment and futurity
(Kafer, 2013; Mamo, 2005; Swanson, 2014). ‘Situated in the biome-
dicalization era’, Mamo (2005: 258) observes, ‘sperm banks com-
modify sperm and market it to potential consumers, in ways evoking
ideas of genetic determinism, commodity exchange and capital
Fritsch and McGuire 11

investment in the future’. Relying on oversimplified and determinis-

tic cultural understandings of human genetics and heredity, the over-
arching narrative underpinning commercial sperm banks is one of
genetic destiny, promising to give prospective parents a hand in
choosing the identity and potential of their future offspring. How-
ever, many of the traits and characteristics that are being selected for
and against (e.g. SAT scores, hobbies, education level, religious
background) are not traits that are genetically heritable. And, as
recent developments in the science of genetics suggest, even traits
and conditions that are widely understood to be genetically linked –
schizophrenia, for example – are nonetheless profoundly social.
This brief history of the politics of assisted reproduction and cryo-
preservation marks the case of Donor 9623 as revolving around a
series of (false) dichotomies and oppositional extremes rooted in
eugenic hopes and fears about genetic inheritance. ‘It was like a
dream turned in an instant’, admitted Collins in an interview with
the Toronto Star: Collins and Hanson thought they had chosen donor
quality or fitness but were confronted by its ‘exact opposite’ (Boyle,
2016; CBC, 2016). The media coverage of the lawsuit confirms this
dualism: time and again, the moral fantasy of a perfect, healthy donor
is rather straightforwardly set against the ‘reality’ of a deceptive,
mentally ill ex-convict (Boyle, 2016; CBC, 2016). Yet, upon closer
inspection, the case derives its power and salience not from these
extremes of opposition but from the spaces between them. In fact, the
case of Donor 9623 turns on spectral risk, and a spectrum of severity
– positing that things like health and illness are not so much deter-
mined genetic traits but fluid states. In what follows, we review
genetic and psychiatric frameworks for understanding schizophrenia
and demonstrate how 21st-century shifts in these fields bring dualis-
tic notions of the normal and the pathological together with spectral
understandings of risk and disability.

Twenty-first-century Spectrums of Risk in Genetics

and Psychiatry
The public and private shock and outrage surrounding the case of
Donor 9623 hinges on the idea that schizophrenia is heritable, that
the highly stigmatized disorder is written into the DNA code and thus
can be transmitted from one generation to the next (in this case, via
12 Body & Society XX(X)

the biological father’s sperm). Upon learning that their son’s sperm
donor was previously diagnosed with schizophrenia, parents Collins
and Hanson were confronted by the possibility that their son too
might harbour a genetic predisposition to the disorder. Collins and
Hanson’s worries reflect a general consensus within medical and
psychiatric communities that schizophrenia has a clear genetic com-
ponent, a hypothesis based on decades of twin studies that have found
a significantly increased likelihood of identical twins developing the
diagnostic symptoms of schizophrenia, much higher than with fra-
ternal twins or other family members who don’t share the same
genome (Gejman et al., 2010; Roth et al., 2009). Yet, the genetics
of schizophrenia remains wildly heterogeneous; no single schizo-
phrenia gene accounts for all cases where the disorder is phenotypi-
cally observed and diagnosed (Gejman et al., 2010). Many
contemporary researchers are working with the assumption that there
are multiple ‘schizophrenias’, which can be traced back to a series of
microdeletions or duplications across a range of gene regions
(Jablensky, 2014). Indeed, in 2014, a landmark study published in
Nature by the Schizophrenia Working Group of the Psychiatric
Genomics Consortium (2014) identified over 100 gene regions asso-
ciated with the disorder. ‘Mutations’ are sometimes de novo or spon-
taneous (e.g. arising at or post conception). Other times, they are
thought to be inherited or familial mutations, passed on through the
generations (Boshes et al., 2012).
Even as genetic mutations may be transmitted from parent to off-
spring, as neuroscientist Stephen Hyman (2008: 891) notes, there are
‘diverse genetic, environmental and random factors’ that are a nec-
essary prerequisite for disease expression and/or play an important
role in determining the degree of phenotypic severity. Such ‘random
factors’ may include toxic environmental exposures or personal
experiences of abuse, trauma and oppression (Blackman, 2015,
2016; Weasel, 2016). And, while studies in genetics have long pos-
tulated that an individual’s past or present exposures can influence
the manifestation of disease, more recent studies in epigenetics have
demonstrated that these effects can be intergenerational. Guthman
and Mansfield (2015) note that ‘epigenetic marks laid down in utero
influence health or disease in adulthood and adult environmental
exposures often manifest not in the individuals but in their children’.
Such epigenetic marks include ‘paternal contributions, not just
Fritsch and McGuire 13

genetic but also experiential’ (Weasel, 2016: 113), for ‘sperm carry
the marks of a man’s trauma and undernourishment, which leads to
depression and metabolic glitches in his offspring’ (Guthman and
Mansfield, 2015). Due to this genetic complexity, there is currently
no straightforward objective laboratory method or technology that
can be used to confirm a clinical diagnosis of schizophrenia (e.g.
imaging technique, blood screen or DNA test). Without a diagnostic
means of genetically screening for schizophrenia, contemporary bio-
medical research has turned its attention to the neurobiological and
molecular basis of risk.
Despite the increasing authority given to the empirical sciences of
genetics and the neurosciences, psychiatry still remains the first line
of diagnosis and treatment for individuals experiencing mental dis-
tress. Postgenomic shifts are nonetheless introducing new complica-
tions, as well as opportunities, for clinical diagnostic practices.
Hyman (2008: 891) notes that because
the underlying genetics of common neuropsychiatric disorders has
proved highly complex [ . . . ] there is much evidence that similar
neuropsychiatric symptoms can result from different combinations
of genetic risk factors . . . . [and that] the same genetic variant may
be associated with multiple DSM-IV diagnoses.

In the words of neuropsychiatric researcher, Assen Jablensky (2014:

105), ‘the symptoms of schizophrenia span a wide range of psycho-
pathology and display an extraordinary amount of interindividual
variability and temporal inconstancy’, and so, ‘while current diag-
nostic criteria ensure a degree of reliability, the boundaries of the
phenotype are fuzzy’.
For an increasing number of researchers and clinicians, the cate-
gorical concept of schizophrenia is an inappropriate one, as a singular
domain cannot encapsulate and contain a remarkably diverse range
of human genetic and phenotypic variability. Many in the field are
advocating for a more dimensional framework of diagnosis (Cooper,
2014; Kupfer et al., 2008). Under the dimensional approach, the
clinician is less charged with the task of determining presence or
absence of disorder (as with the categorical model). Instead, the
clinical gaze is trained to observe, measure and monitor disorder
by degree. According to the American Psychiatric Association
(APA), this approach ‘does not imply a concrete threshold between
14 Body & Society XX(X)

“normality” and disorder’ (APA, ‘DSM-5’s Integrated Approach’).

As Anne McGuire notes, ‘normalcy and pathology are no longer
imagined to be diametrically opposed and mutually exclusive, but
are reconfigured instead as oppositional poles anchoring a graded
spectrum of diagnostic possibilities’ (2017: 407).
Perhaps, the clearest evidence of the shifting grounds of psychiatry
lies in the most recent revision of the Diagnostic and Statistical Man-
ual – the so-called bible of psychiatry. While the authors of A
Research Agenda for DSM-V were initially optimistic that the DSM-
5 would fully embrace the dimensional paradigm, these ambitions
were never fully realized (Cooper, 2014; Kupfer et al., 2008). In
DSM-5, disorders remain in clearly defined categories. Yet, the fifth
edition nonetheless represents the APA’s first attempts to combine a
continuum-based dimensional diagnostic approach with its still-
dominant categorical model (APA, ‘DSM-5’s Integrated Approach).
According to an APA Fact Sheet detailing this new ‘integrated
approach’, while all disorders in the DSM-5 remain in discrete cate-
gories, ‘measures indicating degree of acuteness have been added to
several combined diagnoses’ (APA, ‘DSM-5’s Integrated Approach’).
Schizophrenia is one such integrated diagnostic category. The
DSM-5 eliminates the discrete schizophrenia subtypes of previous
editions (i.e. paranoid, disorganized, catatonic, undifferentiated and
residual), replacing these with a single, wide-reaching ‘schizophrenia
spectrum’ (APA, 2013b). The new, integrated diagnostic category is
comprised of updated diagnostic criteria and a new dimensional
diagnostic modifier: a sliding five-point metric measuring ‘symptom
severity’. The scale includes nine domains (hallucinations, delusions,
disorganization, abnormal psychomotor behaviour, restricted emo-
tional expression, avolition, impaired cognition, depression and
mania) that can be rated for their level of severity (0 ¼ none; 1 ¼
equivocal; 2 ¼ present, but mild; 3 ¼ present and moderate; and 4 ¼
present and severe) (APA, 2013a). A score of 2 or higher is taken as a
diagnostic indicator for disorder. Most interestingly, just as the new
schizophrenia severity scale places the signs and symptoms of ‘psy-
chosis’ on a continuum with ‘normal’ mental states, it also and at the
same time works to secure a more specific (quantified) means of
differentiation between mental states. While spectral adjustments
to the diagnostic category of schizophrenia blur the boundary
between threshold and subthreshold symptoms – making it more
Fritsch and McGuire 15

possible for clinicians to observe ‘the earliest developmental stages

of schizophrenia’ – the severity metric provides a modality for the
flexible ordering and management of states of health and pathology,
states which remain unambiguously oppositional and morally deter-
mined (Morris and Heinssen, 2014: 7).
As disease aetiologies and diagnostics shift away from rigid sys-
tems of classification, static ontologies and prognostic certainties are
destabilized. Yet, even as 21st-century theories of genes, brains and
minds seem to ‘offer a reprieve from biological determinism’, we
must also confront, following Victoria Pitts-Taylor (2016: 18), the
‘dual association’ of such theories ‘with freedom and control’. Heed-
ing Pitts-Taylor’s warning, we understand spectral risk as a key
contemporary site of both freedom and control. Operating in a mode
that is, at once, anticipatory and regulatory, the contemporary spec-
tralization of risk instantiates a sense of personal freedom through a
uniquely neoliberal consolidation of eugenic control. In the follow-
ing section, we contemplate how contemporary discourses of spectral
risk leverage eugenically inflected notions of disability as an object
of dread in the service of more flexible and inclusive systems of
compulsory able-bodiedness and able-mindedness.

Spectral Risk: Freedom and Control

The case of Donor 9623 helps us to attend to the haunting inter-
relations connecting disability with spectral notions of health and
risk and to practices of ongoing personalized risk management
and therapeutics. As a result of Aggeles’ genetic material, Collins
and Hanson maintain that their son may face ‘a debilitating life-
style’ and that this potentiality is best responded to by continuous,
medical monitoring and, where appropriate, early intervention so as
to deter the onset of mental illness. In an interview with Jeff Dou-
glas on the CBC radio show As it Happens, Collins discusses how a
medical monitoring fund – one of the key demands made by the
plaintiffs in the Xytex lawsuit – might better enable families to take
back some measure of control over their children’s genetic inheri-
tance. The fund, says Collins, would help families of children show-
ing early symptoms of mental illness but would also enable families
with non-symptomatic children to be proactive in staving off the
onset of illness. Collins asks:
16 Body & Society XX(X)

are there things that we could be doing preventatively – so having our

kids enrolled in certain kinds of programming? Do we need particular
kinds of parental advice or workshops to go to, learning all that we can
about mental health issues? Anything that can possibly allow us to set
our kids up for the best life possible, given the circumstance. (CBC,
2016)

As we have seen through the eugenic history of the sperm bank,

notions of heritable disability and illness have long been constellated
through practices of medicalization and risk, in which ways-of-being
become defined and treated as medical problems or as potential risks
to continuously monitor and, whenever possible, eliminate. Vis-à-vis
this history, more recent developments in genetics promise a free-
dom from categorical determinism and thus an overcoming of
eugenic legacies. Approaches that emphasize ‘natureculture’ or the
co-constitution of biology and our social, cultural, political and eco-
nomic environments (e.g. epigenetics) demonstrate that human dif-
ference is as inevitable as it is unstable. Read through the spectral,
risk too becomes a relation. ‘Each person is made by a unique set of
exposures, past and present’, observe Guthman and Mansfield
(2015) and so health risk and responsibility are invariably ‘dispersed
across time and space’. In this way, genetic and epigenetic markers
and related theories of psychiatric dimensionality also mark out the
insufficiencies of neoliberal models of health that tell us that we are
solely and personally responsible for the states of our bodies, minds
and health.
Yet, still, we are haunted by the ‘disability to come’, a disability
that currently lies in wait, that might yet emerge – to a varying degree
– in adulthood or even in future generations (McRuer, 2006: 207).
From Collins and Hanson’s perspectives, the ‘quality biology’ prom-
ised by the sperm bank failed to materialize; the sperm they selected
was inaccurately characterized and thus wrongly valued. As such, the
positive characteristics and talents of their son are now haunted by
his risky genetics that reads his potential to experience schizophrenia
as – in the absence of intervention – biologically fated and thus in
need of strict oversight and control. As more and more medical risks
are identified (e.g. from environmental exposures to susceptible gene
regions), and with significant technological advances contributing to
an increased capacity to assess and monitor for potential risk factors
Fritsch and McGuire 17

and diagnose disease and disorder earlier, Peter Conrad notes that
risk is ‘increasingly treated as if it were an illness in and of itself’
where ‘risk factors are themselves seen as “protodisease”’ (2007:
163). This sensibility of the body as ‘inherently disordered’ obscures
the relationality of both risk and responsibility and has given rise to a
culture in which health itself is not only conceived of as a ‘duty’, but
as a form of ‘risk reduction’ or prevention (Dumit, 2012: 54–55).
Categorical assessments and static diagnoses are now giving way to a
calculation of normalcy and pathology by degree: medical monitor-
ing, probability assessments, severity metrics and risk management,
measuring and anticipating the gradations of a disability or illness
that is or could yet be. As both disease and disease risk are interpreted
through a spectrum of probabilities and severities that are tied to a
person’s history, exposures and experiences, practices of risk surveil-
lance and management move outside of traditional biomedical
institutions and relations (i.e. hospitals, clinics, doctor–patient
interactions), extending ‘over all facets of life’ (Sweet and Decoteau,
2018: 107). Returning to the particularity of Collins and Hanson’s
son, the idea that the child might be biologically determined flies in
the face of genetic understandings of disability and mental health,
and even the DSM-5’s own rewriting of the categories of schizo-
phrenia as a wide-reaching dimensional ‘schizophrenia spectrum’.
His risk, nonetheless, continues to be hailed and reproduced through
forms of individualized medicalization – in this case through calls for
the continuous surveillance of the individual, his behaviours, reac-
tions, emotions, choices, the programs he’s enrolled in, the people he
spends time with and so on – rather than through enacting substantive
alterations to our collective social, political, economic, environmen-
tal and cultural living conditions.
Disability risk spectrums and their attendant demands for ongoing
medical monitoring and customized therapeutics are becoming
increasingly relevant to questions of, for example, education, parent-
ing and law enforcement. And, as we have seen with Doe v. Xytex
Corp (2017), such questions are extending into realms of product
development, marketing and tort law. While the science of plastic
brains, flexible epigenomes and dimensional psychiatry might well
open up tremendous possibilities for improved medical treatments,
such discoveries are also at the same time driving, and are being
driven by, the interests of a variety of private industries
18 Body & Society XX(X)

(e.g. biotechnical, pharmaceutical and military), and attendant neo-

liberal demands for innovation and adaptation, dictating that individ-
uals optimize and enhance their biology as a matter of personal
responsibility and citizenship. By investing in spectrums of risk and
concomitant personalized (mental) healthcare, we are offered the
hope that our genetic futures previously thought to be indelible might
yet be overwritten by responsible behaviours and ‘good’ choices.
Indeed, through preventative and therapeutic enhancements, ongoing
surveillance and assessment, and, where necessary, early rehabilita-
tive interventions, the hope and indeed the expectation is that we are
able to choose to transform our brains and bodies away from dis-
ability. This kind of mental health spectrum produces normalizing
subject effects. As Lisa Blackman notes in relation to a schizophrenia
diagnosis in particular, when a ‘person is haunted by the threat and
supposed intractability of disease . . . compliance with drug regimes
is usually proffered as the best means of defence’ (2015: 26). Caught
between disability dread and therapeutic compliance, the spectral
schizophrenic subject (which includes, as is the case with Collins
and Hanson’s son, the subject found to be genetically at-risk for
schizophrenia) is thus, ‘marked out as a specific kind of person, often
subject to particular forms of fear, prejudice and stigma’ (Blackman,
2015: 26). Haunted by the looming spectre of new or more severe
forms of disability, which are always on the horizon, the 21st-century
spectral subject is required to be alert to and guard against its object
of dread by ‘choosing’ to invest in ongoing bodily and mental inter-
ventions, therapeutic protocols and surveillance regimens.
While the genomic sciences have opened up ‘new ways of think-
ing about body-environment interactions’ as is evident in the case of
Donor 9623, we are simultaneously ‘presented with a very narrow
view of what we ought to be and what we ought to do about who we
are’ (Guthman and Mansfield, 2015). The spectralization of risk
works to transform questions of human variation and difference into
risky pathological states to be continuously calculated, monitored
and guarded against. Here we find what Mansfield and Guthman call
‘a new more plastic form of eugenics’, one that ‘in the name of
optimization and elimination of biological “disease” [ . . . ] promotes
the elimination of bodily difference toward a privileged, idealized,
and white norm’ (Mansfield and Guthman, 2015: 16). We read this as
a more flexible and inclusive compulsory able-bodied/mindedness, a
Fritsch and McGuire 19

normalizing system which, according to McRuer, ‘functions by cov-

ering over with the appearance of choice, a system in which there is
actually no choice’ (2006: 8). For, just as it is virtually impossible to
choose some donor characteristics at the sperm bank, in an era in
which ongoing, personalized medical surveillance regimens and
therapeutic and enhancement technologies proliferate, it is also
becoming increasingly difficult to choose certain kinds of (non-nor-
mative) bodies or minds, by for example, opting out of normalizing
interventions or treatments (e.g. people with the label of schizophre-
nia refusing medication, parents of autistic children declining beha-
vioural therapies and so on).
Of course, the idea of choice also presumes that everyone is equally
positioned to opt-in in the first place. As the Doe v. Xytex Corp. lawsuit
makes clear, ongoing, personalized medical surveillance and interven-
tion is costly, often privatized, and thus accessible only to those (few)
with the necessary private funds. This leaves the vast majority of
existing disabled people, as well as people belonging to this expansive
and nebulous group of the not-yet disabled, in the impossible position
of being unable to choose the only available choice. To find oneself
occupying a space that is culturally and politically unanticipated,
undesired and/or forbidden is most certainly to find oneself exposed
to yet another range of risks to the flourishing of body and mind, risks
that are often socially and politically sanctioned under the structural
conditions of compulsory able-bodiedness and its intersections, such
as increased rates of incarceration and institutionalization, police and
state surveillance, violence, poverty, suicide, social isolation and so on
(Kafer, 2013; Puar, 2017; Sins Invalid, 2016). This context is impor-
tant to think through as we endeavour to make room for more capa-
cious understandings of disability and risk, understandings that, we
hope, might haunt us towards being more attentive to the uneven
social, political and environmental conditions that mediate disability
risk (i.e. the disability to come), while also and at the same time push
us to fight for the just treatment of the ‘disability already here’
(Ben-Moshe, 2018).

Conclusion: Towards a Disability Politics of Spectral Risk

Spectrums of risk and attempts to control, optimize or intervene in
our body-minds highlight the ways in which we are haunted by
20 Body & Society XX(X)

disability. Disability remains an object of dread precisely because we

can never fully overcome it. Nor can we, it seems, fully embrace it:
disability does not lurk in individual bodies that can be denied,
defended or overcome, but rather circulates in and out of our bodies,
both of us and beyond us. The circulation of disability is itself polit-
ical: disability as an effect of structural and/or interpersonal violence,
oppression, exposures and traumas ensures that disability is distrib-
uted unevenly across populations and in some cases, such debilita-
tion is politically targeted (Puar, 2017).
The possibility of the spectrum of disability lies in the ways it
exposes an inherent connectivity, relationality and interdependency
between bodies and their social and physical environments. Indeed,
the notion of a relational and responsive disability spectrum promises
that we can together make a world that can embrace variegations of
embodied difference such that confronting the biosocial limits of
ourselves is met with collective commitments to creating infrastruc-
tures of access, care and supports for flourishing. Yet a haunting
dread of disability entangled with forms of compulsory able-bodied/
mindedness continues to successfully dominate contemporary dis-
courses and practices of the body. This system of control is able to
operate precisely because of the ways in which disability is
embroiled with targeted forms of debilitation and concomitant
forms of capacitation. The individualized embrace of spectral risk,
the desire to control and shield oneself through enhancement,
optimization and early intervention threatens to weaponize disability
against itself. Put differently, instead of moving towards a more
expansive disability justice, we continue to hail the disability spec-
trum as a vector of social control, a weapon of debilitation, as a tool
of eugenics, white supremacy and nationalism, and as a way of
upholding oppressive social, political, economic and environmental
conditions. These practices work to turn the promise of disability –
disability’s essential and indeterminate spectrality and relationality
– into a means of limiting or even foreclosing possibilities for
flourishing in and with disability. As long as disability remains
an untenable way of being, disability will not only continue to haunt
us as an object of dread but will also be selectively weaponized
against us to support the targeted debilitation of particular – and
often already marginalized – populations. For the ghosts of disabil-
ity to move on, for being ‘fine right now’ to be transformed into also
Fritsch and McGuire 21

being ‘fine’ with the disability to come, we need to disconnect

disability from such bio- and necropolitical weaponized practices
of debilitation and capacitation, and embrace, support and engage
the ‘specific sensibilities and discourses’ that disability offers (Ben-
Moshe, 2018).
As we’ve seen, the case of Donor 9623 does not end with biolo-
gical determinism. This is not the story of risk realized, but rather it
dwells in spectral risk: speculative futures, ongoing monitoring and
perpetual therapeutic controls. As we learn more about the indeter-
minacy of our genetic code, the fluidity of our inheritances, the
dimensionality of our minds and the interplays and interdependen-
cies between the molecules that compose us and the environments
that contain us, we are confronted with the contingencies and multi-
plicities of a human biology with complex genealogies (Meloni,
2018). Vis-à-vis such contingencies and multiplicities, ‘we would
do well’, Guthman and Mansfield (2015) implore, ‘to learn to live
with difference’. Here, Guthman and Mansfield’s recommendation
should not be confused with resignation; they are not implying we
live with the status quo. While, as the case of Donor 9623 demon-
strates, difference is so often used as an alibi for maintaining the
normative order of things through the regulation and management
of, and profiteering from, non-normative bodies and minds, the spec-
tral also whispers that things could be otherwise.
Disability is here and is also lurking around the corner. It is not
something we have but something we participate in. In this way, we
vitally need disability pride, disability arts and culture, crip epis-
temologies (Johnson and McRuer, 2014) and crip technoscience
(Hamraie and Fritsch, 2019) as much as we need access, healthcare,
housing and employment for these are the means by which we can
live with disability. These are, in other words, the specific practices,
sensibilities and discourses that imbue disability, not only with pos-
sibility, but with transformative meaning, value and desirability
(Ben-Moshe, 2018). Embracing disability and disability culture
enables us to offer both the ‘disability to come’ and ‘the disability
already here’ something more than dread, monitoring, intervention
and individual overcoming (Ben-Moshe, 2018). A turn towards non-
individualizing notions of embodied variation, the relationality of
risk and the indeterminacy of our differences could lay the ground-
work for a renewed focus on environmental and structural inequities,
22 Body & Society XX(X)

which might, in turn, foreground new possibilities for building more

accessible futures and improving the life chances of historically
oppressed people.

ORCID iD
Kelly Fritsch https://orcid.org/0000-0003-0786-8198

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26 Body & Society XX(X)

Kelly Fritsch is an assistant professor in the Department of Sociology and

Anthropology at Carleton University in Ottawa, Canada, unceded Algon-
quin Territory. As a feminist disability studies scholar and crip theorist, her
work engages contemporary epistemologies and ontologies of disability
towards more accessible and just practices. She is co-editor of Keywords
for Radicals: The Contested Vocabulary of Late-Capitalist Struggle (AK
Press, 2016) and has recently co-edited special journal issues of Somatech-
nics, Feminist Formations, and Catalyst: Feminism, Theory,
Technoscience.
Anne McGuire is an assistant professor in Equity Studies at the University
of Toronto. Engaging the intersections of disability studies and crip theory,
her work reads 21st-century spectrum approaches to health and illness
against a backdrop of neoliberal social and economic policies. She is author
of War on Autism: On the Cultural Logic of Normative Violence, recipient
of the 2016 Tobin Siebers Prize for Disability Studies in the Humanities.
With Kelly Fritsch, she co-edited a recent special issue of Feminist For-
mations on ‘The Biosocial Politics of Queer/Crip Contagions’.