3 Break Open

Managing Genetic Health and Risk at the Sperm Bank

The case of Donor 9623 turns on eugenic understandings of biological inheritances: Collins and Hanson’s lawsuit against Xytex alleges that the corporation sold the plaintiffs a “defective and unsafe” sperm product, which, it is assumed, plays a key role in determining the outlook and life chances of the biological offspring it helped to create (Doe v. Xytex Corp 2017). “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. The donor “has some serious debilitating mental health issues that . . . if our son was to develop those into puberty and into early adulthood, he might end up having a life not unlike our donor,” Collins explains. Noting that it took Aggeles twenty years to obtain his bachelor’s degree, that he struggled to keep a job, and was “in and out of jail, in and out of psych wards,” Collins concludes, “this isn’t exactly what we had signed up for” (T. Boyle 2016). Biology anticipates the future, alleges Collins. She continues by describing how risky genetics, as is suggested by a familial history of mental illness diagnoses, can lead to equally risky futures, both biological (e.g., disability) 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 or not. 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.

Critical 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 (2006, 9) notes, the seemingly 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 ability. Alison Kafer’s (2013) work on reproductive futurity, moreover, marks the material and ethical importance of imagining disability (or otherwise nonnormative) futures. “These stories deserve telling,” writes Kafer, “and the issues they raise demand debate and dissent” (85). With these critiques in mind, it is necessary to historicize the case of Donor 9623 and its assumption of agreement about good inheritances and good futures to consider how eugenic thinking has underpinned and continues to inform social and scientific ideas and practices of assisted reproduction. From the binary notions of superior and inferior heredities endemic to the nineteenth- and twentieth-century practices of artificial insemination and cryopreservation to the twenty-first-century risk spectrum driving the contemporary gamete industry and the case of Donor 9623, we offer a 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—a dread bolstered by “white supremacist racial fictions” (Chen 2023, 30). We do so to draw attention to the implications of shifting social and scientific concerns about risk and disability.

The rise of assisted reproduction—which includes the contemporary phenomenon of the for-profit sperm bank—has long shaped novel understandings about the purpose and function of human procreation. On the one hand, artificial insemination with donor sperm productively disrupts, as Sebastian Mohr (2018, 2) argues, “dominant conceptions of parenthood, family, and kinship, which are based on bilineal descent (tracing one’s ancestry through one’s mother’s and father’s [biogenetic] lineage) and a congruence of biogenetic and social connections.” On the other hand, as both a concept and a practice, artificial insemination with donor sperm is inseparable from a history focused on human improvement and social betterment via eugenic narratives of racial purity (Daniels and Golden 2004; Swanson 2012). This, of course, is grounded in the assumption “that both race and disability are simply biological categories passed along through sexual procreation” (Lenon and Peers 2017, 141). Understood as nothing more or other than biological outcomes or effects of reproduction, disability, in its entanglement with eugenics and race, becomes a set of traits or states that can be selected for or against. We find traces of this logic in the first recorded use of donor sperm, which is thought to have occurred in the late nineteenth-century United States, at the hands of Philadelphia physician William Pancoast. After confirming the infertility of one of his male patients, Pancoast 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 onward, careful attention was paid to finding donors who either matched or “exceeded” the recipient family’s race, class, temperament, and accomplishments. Reflecting social and scientific ideologies, 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” (quoted in Swanson 2012, 244–45). For many scientists and medical practitioners in the early decades of the twentieth century, donor insemination represented “an exciting technology that offered not only hope for the involuntarily childless but also the possibility of improving the human race through selective breeding” (246).

Even as some formal and explicitly state-sanctioned eugenic practices dwindled in popularity following the atrocities of the Second World War, artificial insemination with donor sperm continued to be an active site for racist and ableist scientific preoccupations about human improvement and degeneration. In Iowa in the early 1950s, zoologist Jerome Sherman and urologist Raymond Bunge successfully inseminated four women using donor sperm that had been previously frozen and stored. Bunge expressed the viability of this reproductive approach by appealing to a lingering eugenic sentimentality. Just as the first of the successful pregnancies by frozen sperm were confirmed, in a 1953 letter to his mentor, Bunge wrote that this research “has tremendous implications, both philosophical and clinical.” 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” (quoted in Swanson 2012, 255). Bunge’s optimism for species improvement was not universally embraced, however, or at least not yet. This newfound 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 “quality” 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” (258). Such concerns over “product quality” were heightened in 1954 when the first of the babies created through artificial insemination with frozen sperm was born blind and prone to seizures. Concerns over the risk of disability 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” (266).

Tensions between reproductive normalcy and risk are made even 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 1970s, the industry did not reach its stride until the late 1980s when the emergence of the HIV/AIDS epidemic stoked fears about the origins of donated semen and prompted more rigorous screening procedures (Mamo 2005). As a result, greater oversight practices of risk analysis and management and of testing and retesting donor samples over time were implemented. 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.

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 the normalcy of the offspring it produces. This is also evident as we look to early justifications for the organized establishment and widespread use of sperm cryopreservation. For example, in a 1977 article published in The Journal of Urology, Roy Witherington, John B. Black, and Armand M. Karow (1977, 510) describe how the freezing process provides the ideal conditions to select against “abnormal” sperm. “Only the fit and healthy sperm survive [freezing],” they write, a process that they claim lowers the rate of “birth defects” and increases the likelihood of birthing “good babies.” This legacy continues as the contemporary multi-billion-dollar gamete industry is driven by ideals of health management and risk minimization. These organizations range from (rare) nonprofit institutions focused on improving access to safe reproductive services (e.g., the Sperm Bank of California) to a wide range of 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 the possibility 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 (Swanson 2012; Daniels and Golden 2004; Mamo 2005). Others market themselves based on unique or specialized sperm donors (e.g., the now-shuttered Repository for Germinal Choice, which supposedly trafficked solely in the gametes of “extraordinary men” such as Nobel laureates and 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 enabling prospective parents to select reproductive biomaterial—donor semen—on the basis of donor traits and characteristics deemed desirable. As Desiree Valentine (2021, 36) notes, while historically eugenic fantasies of control were “openly exercised at the state level, increasingly, the operation of this control has shifted to the individual through the use of assisted reproductive technologies.” Consumers can search through reams of donor information, narrowing down their selection based on, for example, race, ethnicity, religion, eye color, skin tone, hair color and texture, height, weight, blood type, education level, talents, hobbies, or astrological sign (Daniels and Golden 2004; Mamo 2005; Bokek-Cohen 2015).

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, submit to a physical exam, provide semen, blood, and urine samples for preliminary analysis, and participate in follow-up testing every six months (Xytex, n.d.; Heled et al. 2022). According to the company’s website, Xytex (n.d.) is “an industry leader in reproductive services” offering “a commitment to unsurpassed quality controls,” including hiring counselors to investigate a donor’s personal and familial health histories. As contemporary commercialized sperm banks advertise themselves by, and derive profit from, the perceived caliber of their donors and the quality of their sperm products, these screening processes are governed by health and safety regulations 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 impossible for sperm bank consumers to choose. Cynthia R. Daniels and Janet Golden (2004) argue that commercial ideals of donor sperm align with Western cultural ideals of masculinity and other normative standards of human behavior and embodiment. 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 (19). Kafer (2013) resonantly describes the controversy faced by a Deaf American lesbian couple that encountered institutional resistance and public scrutiny when seeking a donor with congenital deafness. Clearly, as Laura Mamo (2005, 244) observes, the “the product stored and invested at these banks is not a neutral biomaterial available for purchase but is imbued with certain qualities that affect its value.”

A technoscientific institution as well as a set of practices, the sperm bank braids together ableist and racist eugenic ideals of human genetics and biology with capitalist understandings of choice, investment, and futurity. “Situated in the biomedicalization era,” Mamo (2005, 258) observes, “sperm banks commodify sperm and market it to potential consumers, in ways evoking ideas of genetic determinism, commodity exchange and capital investment in the future.” Relying on oversimplified and deterministic cultural understandings of human genetics and heredity, the overarching 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. At the same time, many of the traits and characteristics that are being selected for and against, such as hobbies, education level, or religion, are traits that are not, strictly speaking, genetically heritable. And, as recent developments in the science of genetics suggest, even traits and conditions that are widely understood to be genetically linked are nonetheless profoundly social. In what follows, we review genetic and psychiatric frameworks for understanding schizophrenia and demonstrate how contemporary shifts in these fields bring dualistic notions of the normal and the pathological together with spectral approaches to risk and disability.

Spectrums of Risk in Contemporary 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 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 harbor a genetic predisposition to the disorder. This worry reflects a consensus within medical and psychiatric communities that schizophrenia has a clear genetic component, 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 fraternal 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 schizophrenia gene accounts for all cases where the disorder is phenotypically observed and diagnosed (Gejman et al. 2010). Many researchers now work under the assumption that there are multiple schizophrenias that can be traced back to a series of microdeletions or duplications across a range of gene regions (Jablensky 2014). A study published in Nature by the Schizophrenia Working Group of the Psychiatric Genomics Consortium (2014), for example, identified over one hundred gene regions associated with the disorder. Such genetic differences are sometimes spontaneous, arising at or post-conception. Other times, they are thought to be inherited or familial mutations, passed down through the generations (Boshes et al. 2012).

Even as genetic mutations may be transmitted from parent to offspring, as neuroscientist Steven E. Hyman (2008, 891) notes, there are “diverse genetic, environmental and random factors” that are a prerequisite for disease expression or that play an important role in determining the degree of phenotypic severity. Such “random factors” may include familial histories, environmental exposure to toxins, or personal experiences of abuse, trauma, and oppression (Blackman 2015, 2016; Weasel 2016). And, while studies in genetics have long postulated that an individual’s past or present exposure can influence the manifestation of disease, more recent studies in epigenetics demonstrate that these effects can be intergenerational. For example, Julie Guthman and Becky 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 genetic but also experiential,” such as trauma and undernourishment, which can metabolically affect offspring (Weasel 2016, 113). 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., no single imaging technique, blood screen, or DNA test). Without a diagnostic means of genetically screening for schizophrenia, contemporary biomedical 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 remains the first line of diagnosis and treatment for individuals experiencing mental distress. Postgenomic shifts are nonetheless introducing new complications, 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.” Therefore, he continues, “the same genetic variant may be associated with multiple DSM-IV diagnoses.” In the words of neuropsychiatric researcher Assen Jablensky (2014, 105), schizophrenia manifests an “extraordinary amount of interindividual variability and temporal inconstancy,” and so, “while current diagnostic criteria ensure a degree of reliability, the boundaries of the phenotype are fuzzy.” Because of this, for an increasing number of researchers and clinicians, the categorical 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. As a result, many in the field advocate for a more dimensional framework of diagnosis (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 2013b), this approach “does not imply a concrete threshold between ‘normality’ and ‘disorder.’” In this way, as Anne McGuire (2017, 407) argues, “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.”

Perhaps the clearest evidence of the shifting grounds of psychiatry lies in the 2013 revision of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), 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 (Kupfer et al. 2008). In the 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 2013b). According to an APA fact sheet detailing this new integrated approach, while all disorders in the DSM-5 remain in discrete categories, “measures indicating degree of acuteness have been added to several combined diagnoses” (APA 2013b).

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 2013a, 87). The new, integrated diagnostic category is composed of updated diagnostic criteria and a dimensional diagnostic modifier: a sliding five-point metric measuring “symptom severity.” The scale includes nine domains (hallucinations, delusions, disorganization, abnormal psychomotor behavior, restricted emotional expression, avolition, impaired cognition, depression, and mania) that can be rated for their level of severity (0 = none; 1 = equivocal; 2 = present but mild; 3 = present and moderate; and 4 = present and severe) (100). A score of two or higher is taken as a diagnostic indicator for disorder. Interestingly, just as the schizophrenia severity scale places the signs and symptoms of “psychosis” on a continuum with “normal” mental states, it also 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 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, which remain unambiguously oppositional and morally determined (Morris and Heinssen 2014, 7).

As disease etiologies and diagnostics shift away from rigid systems of classification, static ontologies and prognostic certainties are destabilized. Yet, even as twenty-first-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.” Heeding Pitts-Taylor’s warning, we understand risk as a key site of both freedom and control. Operating in a mode that is, at once, both anticipatory and regulatory, the contemporary mobilizations of risk instantiate a sense of personal freedom and choice through a uniquely neoliberal consolidation of eugenic control. In what follows, we contemplate how contemporary discourses of 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/-mindedness. We then explore the ways in which disability justice and culture respond to, and reimagine, spectral relations toward more expansive understandings of how risk can be collectively shared.

Spectrums of Freedom and Control

Our brief history of the racial and disability politics of assisted reproduction and cryopreservation 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,” admits Collins in an interview with the Toronto Star. Collins and Hanson thought they had selected “good” genes but were confronted by the “exact opposite,” defective DNA or “bad” genes (T. Boyle 2016; CBC 2016). The stakes of this dichotomy are both underscored and heightened by cultural discourses surrounding psychiatric disability in general and schizophrenia in particular. Derived from the Greek skhizein, meaning “to split,” and phrēn, meaning “heart, mind,” the name schizophrenia literally calls up a state of mental fragmentation or brokenness (OED 2023b). Indeed, people affected by schizophrenia are routinely described in scientific literature and popular culture alike as having “broken brains,” “fragmented minds,” “shattered selves,” and as experiencing “breakdowns” and “breaks with reality.” It is against this morally saturated, opposingly organized rhetorical scene that the DNA of Donor 9623 appears, wherein the moral fantasy of a perfect, whole, and healthy donor is itself shattered to unveil the supposed reality of a broken and deceptive criminal (T. Boyle 2016; CBC 2016).

Yet, upon closer inspection, the case derives its power and salience not from these extremes of opposition (i.e., whole/broken, healthy/sick, good/bad) but from the spaces between them. Indeed, as we have already noted, this case leans on spectral notions of risk and severity—positing that things like mental health and illness are fluid states. Projected through the spectral, what was once understood as a static “fragmented mind” born of “bad genes” is further broken up, refracted into an infinite range of personal risk and degrees of severity. This case shows us that a spectral move away from categorical psychiatric diagnostics and genetic determinism—while certainly full of potential—is an insufficient means of disrupting two centuries of racist and ableist eugenic thought and practice. As we endeavor to break up with the dominant Western biomedical approach to disability, disease, or illness as a clear-cut indicator of brokenness (i.e., bad genes, broken minds, irrevocably damaged people), we too must also ensure a clean break from these violent eugenic histories.

Valentine (2021) contends that one way to ensure such a break from eugenic pasts and presents is by attending to disability as itself a kind of (re)productive technology. A core, almost unquestionable assumption at the heart of this case is that disability is simply a by-product of the assisted reproductive process. Schizophrenia is—or at least could be—reproduced from donor to offspring by way of biological/genetic notions of heritability. This belief that disability can and is only ever reproduced, as opposed to disability being actively (re)productive, explains Hanson and Collins’s abrupt shift from describing how their experience of assisted reproduction went from one extreme (“a dream”) to another (“its exact opposite”) following the revelation of their donor’s “risky” genetics. Hanson and Collins’s statements such as “We didn’t sign up to choose knowingly that our donor had schizophrenia” point to their belief that in selecting for donor fitness, they can control for the results of reproduction and by extension ensure a “good” (i.e., nondisabled) future for their child. Such assumptions “rely on the continued construal of race and disability as biological substances for which we can control—substances located in particular bodies and managed through forms of biological (and now biotechnological) means” (36). In essence, these eugenic assumptions situate race and disability “merely as products” of reproduction (36–37). However, decades of work in the overlapping and intermingling fields of critical race and critical disability studies have thoroughly critiqued and debunked the individualization and naturalization of biological categories of race and disability, leading Valentine to argue that “race and disability are not passive products of reproduction but are instead active technologies in the reproductive affair themselves, instruments produced and used in the service of particular goals and processes and in particular contexts” (37). Along with Valentine, we turn toward the ways in which disability is not just produced but also productive, leveraged as “a tool that organizes society and relations” and as a “means by which other sorts of ends are attained” (42, 43). This is to say, not only are disability and race socially constructed, they also actively shape and construct sociopolitical arrangements and relations of power. Acknowledging disability as productive enables us to better attend to the unique problems and possibilities presented by risk spectrums with an eye to break from past and present eugenic social relations.

The legal and popular discourse surrounding Donor 9623 exposes the haunting interrelations connecting disability with spectral notions of health and risk. The case straightforwardly locates risk in the individual body and biomaterial substrates of a donor diagnosed with schizophrenia, as well as in the offspring he helped to produce through artificial insemination. Yet, insofar as the genetics and symptomatology of the schizophrenias are incredibly heterogeneous, the case turns not on categorical risk but on a spectral range of risk potentials. The instantiation of the disability spectrum as nothing more or other than a range of products of biological reproduction—as opposed to a constellation of social and political conditions that are actively productive and shaping the reproductive outcomes and future possibilities—“makes the individual the site of governance through the self-regulation of genetic risk” and anticipates individualized forms of risk mitigation (D. Roberts 2009, 794).

As a result of Aggeles’s allegedly defective or damaged genetic material, Collins and Hanson maintain that their son may face “a very debilitating lifestyle” and that this potentiality is best responded to by continuous medical monitoring and, where appropriate, early intervention to deter the onset of mental illness. In an interview on CBC Radio, 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 inheritance and, thus, their futures. The fund, says Collins, would help families of children showing early symptoms of mental illness and would also enable families with nonsymptomatic children to be proactive in staving off the onset of illness. Collins asks: “Are there things that we could be doing preventatively? . . . Anything that can possibly allow us to set our kids up for the best life possible, given the circumstance” (CBC 2016). As we’ve seen through the history of artificial insemination and assistive reproduction, notions of heritable disability and illness have long been constellated through practices of medicalization and risk in which racialized and disabled ways of being become defined and treated as biological problems in order “to justify the prevention of certain imagined classes of people and the production of others” (Valentine 2021, 35). The twenty-first-century move from categorical risk to risk spectrums continues to imagine disability as a potential medical risk to perpetually monitor for and, whenever possible, eliminate. In this way, contemporary personalized risk management and therapeutic practices continue to uphold a racialized eugenic ideology: Disability is seldom “neutrally described and managed” but rather “is actively connoted as hazardous, thereby demanding elimination” (46). For Collins and Hanson, “the best life possible” for their child is a life without disability, or at least a life that minimizes disability. Risk maps onto the spectrum only to further entrench individualized interventions that turn us away from disability. This is despite the ways spectral approaches also promise freedom from categorical determinism and thus an opportunity to overcome eugenic legacies. Approaches that emphasize “natureculture,” or the coconstitution of biology and our social, cultural, political, and economic environments (e.g., epigenetics), demonstrate that human difference is as inevitable as it is unstable. “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 we are solely and personally responsible for the states of our bodies, minds, health, and risks.

Yet, still we are stubbornly 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” promised 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 mark 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 and diagnose disease and disorder earlier, Peter Conrad (2007, 163) notes that risk is “increasingly treated as if it were an illness in and of itself” where “risk factors are themselves seen as ‘protodisease.’” 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 conceived of as not only a “duty” but also 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 monitoring, 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 surveillance 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 specificity 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 schizophrenia 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 his continuous surveillance, including his behaviors, reactions, 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 social, political, economic, environmental, and cultural living conditions to collectivize risk.

Disability risk spectrums and their attendant demands for ongoing medical monitoring and customized therapeutics are becoming increasingly relevant to questions of, for example, education, parenting, 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 (e.g., biotechnical, pharmaceutical, and military) and accompanying neoliberal demands for innovation and adaptation, dictating that individuals optimize and enhance their biology as a matter of personal responsibility and citizenship. By investing in spectrums of risk and concomitant personalized (mental) health care, we are offered the hope that our genetic futures previously thought to be indelible might yet be overwritten by responsible behaviors and “good” (consumer) choices. Through preventive and therapeutic enhancements, ongoing surveillance and assessment, and, where necessary, early rehabilitative interventions, the hope—and, indeed, the expectation—is that we are able to choose to transform our brains and bodies away from disability. This kind of mobilization of the spectrum produces normalizing subject effects. Caught between disability dread and therapeutic compliance, the 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 specter of new or more severe forms of disability that are always on the horizon, the twenty-first-century subject is required to be alert to, and guard against, its object of dread by “choosing” to invest in ongoing medicalized forms of repair and maintenance.

While the genomic sciences have opened up “new ways of thinking 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 spectrum transforms questions of human variation and difference into risky pathological states to be continuously calculated, monitored, and proactively guarded against. Here we find what Mansfield and Guthman (2015, 16) call a “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.” We read this as a more flexible and inclusive compulsory able-bodied/-mindedness, a normalizing system that “functions by covering over, with the appearance of choice, a system in which there actually is no choice” (McRuer 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 opt out of normalizing forms of repair and maintenance, such as people with the label of “schizophrenia” refusing medication or parents of autistic children declining behavioral therapies.

Of course, the idea of choice also presumes that everyone is equitably positioned to opt in in the first place. As the Doe v. Xytex Corp. lawsuit makes clear, ongoing, personalized medical surveillance and intervention 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, or forbidden is most certainly to find oneself exposed to yet another range of risks to the flourishing of body and mind, which are often socially and politically sanctioned under the structural conditions of compulsory able-bodiedness/-mindedness and its intersections, such as increased rates of incarceration and institutionalization, police and state surveillance, violence, poverty, suicide, social isolation, and so on (Fritsch et al. 2022; Ben-Moshe 2020). This context is important to think through as we endeavor to make room for more capacious understandings of disability and risk that, we hope, might push us to attend to the uneven social, political, and environmental conditions that mediate the risk of the disability to come while also pushing us to fight for the just treatment of the “disability already here” (Ben-Moshe 2018).

Embracing Disability Culture and Disabled Kin

Mobilizing the spectrum to individualize risk and to control, optimize, or proactively repair ourselves highlights how we continue to be eugenically haunted by the dread of disability. Disability remains a risky object of dread in part because we can never fully overcome or contain it. The spectrum also alerts us to how disability does not lurk in individual bodies but rather circulates in and out of our bodies, both of us and beyond us. In this way, disability is relational: It is produced within sociopolitical and ecological arrangements and productively shapes those arrangements in turn. While disability materializes within a tangle of social relations, spectral notions of disability are routinely deployed to focus on the individualized risks rather than the tangle, furthering forms of neoliberal health responsibilization. Here, the circulation of disability is political. Disability frequently comes to cohere as the result of systems that unevenly break us: structural and interpersonal violence, socioeconomic oppression and inequities, toxic environmental exposures, and traumas that are thoroughly gendered, racialized, and unevenly distributed across populations. Critical considerations of debilitation, violence, and inadequate social and material supports are frequently elided by the ways neoliberalism individualizes risk. This neoliberal order is particularly acute in social discourses surrounding practices of assisted reproduction and artificial insemination as they take for granted the understanding of disability as a problematic defective, deficient, or broken individual biological state that might, without careful control and vigilant monitoring, be passively reproduced. Such discourses eclipse the ways disability itself, as well as the ways we participate in and respond to it as an individual state of brokenness in need of a fix, are (re)productive. Approaching disability as an active and productive relational practice situated in specific historical, biological, and social arrangements opens up some political and imaginative possibilities and futures while serving to contest others. Recognizing and attending to the ways disability is actively productive pushes us to break from past and present eugenic social relations to mobilize the spectrum in ways that collectivize risk and foster disability culture and the making of disabled kin. We turn now to the writings of Esmé Weijun Wang to unpack the relational potential of the spectrum to further interdependent approaches to disability and collective forms of risk mitigation.

In her 2019 book of nonfiction essays The Collected Schizophrenias, Wang offers us a nuanced understanding of risk gleaned through her own experiences as someone diagnosed with schizoaffective disorder. In her chapter “The Choice of Children,” Wang jumps between a first-person retelling of her time spent working at Camp Wish, a summer camp for children with bipolar disorder, and her present-day reflections on madness, inheritance, mothering, and kinship. Early in the essay, Wang shares that “for over a decade, I have not wanted, or even considered having, biological children” (82). It is a decision, she informs us, that is inseparable from her lived experience as a mad person, as well as from her understanding of the heritability of her mental illness. Wang writes: “Though those closest to me know exactly why I am not having children, and exactly why I am not considering adoption, either, I’m still asked by a healthy few if childbearing and/or child-rearing is part of my life plan. If I barely know the person, I say something vague about having a severe, genetic medical condition, and leave it at that. If pressed further, I talk about the medications I take, their potential detriment to a fetus, the complications that are likely to ensue postpartum, and the genetic chances of passing my disorder on to my child” (82). At first glance, Wang’s orientation to her own reproductive risk seems to echo and even confirm Hanson and Collins’s concerns about their son’s genetic inheritance: how their donor’s diagnosis of schizophrenia is assumed to foreground and even foreclose their son’s (good) future. Wang’s account doesn’t gloss over the acute pain of her experiences of being “afflicted” by mental illness. While Wang admits that she is “aware of implications of the word ‘afflicts’” and the ways it problematically “supports a neurotypical bias,” she goes on to state that she believes “in the suffering of people diagnosed with the schizophrenias and our tormenting minds” (4). “The schizophrenic does suffer,” Wang contends, before disclosing some of her own experiences of the debilitating effects of her illness: “I have been psychically lost in a pitch-dark room,” she writes. “If I make a wrong move, I’ll have to face the gruesome consequence” (4).

In acknowledging schizophrenia’s debilitating effects, Wang and Hanson and Collins are in collective agreement. Yet, Wang’s essay disturbs the naturalized idea that schizophrenia is simply an undesirable biological condition contained within a bounded body that gets passed on through genetic reproduction. In her opening essay, Wang describes both the genetic and epigenetic contours of the illness that she knows both through her own lived experience and through her expertise as a researcher. Drawing on her insights as a former clinical psychology lab manager at Stanford, Wang (2019, 16) describes the diathesis-stress model of psychiatric illness, where “genetic vulnerability to a disorder blooms only if enough stressors cause those vulnerable genes to express themselves.” In the lab, Wang and her colleagues often dreamed of what impact these epigenetic theories could have on people’s material and lived experiences. Foregrounding Hanson and Collins’s identification of the need to establish medical monitoring and preventive intervention for their genetically at-risk son, Wang muses, “Someday we might be able to inform parents of their children’s genetic risk for mental illness, and those parents might be able to employ preventative measures before the first signs made themselves apparent” (16). Yet, Wang admits that such a move is not without its complexities: “We did not discuss the practicalities or ethics of taking such action,” she discloses (16). Far from being practically or ethically neutral responses to schizophrenia, Wang hints that this kind of risk surveillance and preventive intervention, too, comes with risks: “Even though I’ve made my parents proud, I can’t help but wonder if that outweighs watching me break down over the years. Perhaps if my mother had been able to choose my genetics, she would’ve rearranged some things” (93). Yet, such a rearrangement, she observes, would mean that she “would be someone else entirely” (93). Discourses of risk, in their focus on the individual body as the primary site of surveillance and intervention, shape and constrain while social or collective risks frequently fall outside of view, left unidentified, untreated. For example, Wang openly wonders if her own experiences of mental illness are related to her birth, a difficult delivery that itself connects to deeper layers of physical and psychic trauma stretched between herself and her mother: the intermingling of their individual bodies and ancestral histories, stretching continents and connecting diverse sociopolitical arrangements and power relations. Schizophrenia is correlated to obstetrical complications and stress resulting from events such as bodily assault. “My head had lodged behind a bone in my mother’s pelvis, which hints of an intergenerational transmission of trauma,” writes Wang, noting that her “newly immigrated, newly married young mother had her own psychiatric issues to contend with.” “Who knows,” Wang wonders, “what happens to the malleable and muddy assortment of fetal cells because of such strain?” (17). As discourses of risk train their sights on monitoring gradations of individual health and illness, the collective impact of intergenerational trauma, xenophobia, ableism and sanism, and other sociopolitical arrangements is frequently obscured.

Questions of disability inheritance continue to be articulated in eugenic terms, with disability cast as an undesirable trait genetically reproduced at the level of the individual. Such framings position disability as something to be managed through personalized risk assessment, aiming at its minimization—or even elimination—via direct intervention, treatment, or cure. Eugenic thinking was certainly underpinning the popular and legal discourse surrounding the case of Donor 9623 where schizophrenia was only ever understood to be biological, heritable, and manageable at the level of the individual. Wang’s account describes schizophrenia risks that are also heritable, yet these risks are situated and historical, biological, and social. Here, how we understand and orient to inheritance has much to do with the question of haunting and the precise localization of its object of dread. Indeed, the first line of The Collected Schizophrenias certainly relays a haunting sense of dread, declaring, “Schizophrenia terrifies” (Wang 2019, 3). Yet, with this assertion, the author stops short of putting disability or mental illness forward as the principal object of dread, at least not in any kind of simple or straightforward way. Instead of localizing dread within the bounded space of individualized mental illness, what is most terrifying for the author lies somewhere between the lived experience of schizophrenia, the sociopolitical relations in which the dread is reproduced and materialized, and the sanist environment in which the dread is delivered. “People speak of schizophrenics as though they were dead without being dead,” notes Wang, “gone in the eyes of those around them” (3). Schizophrenia terrifies, Wang admits, but, in contradistinction to the popular and legal discourses surrounding the case of Donor 9623, the source or site of terror, for Wang, cannot be traced back to the singular site of individualized risk. For Wang, risk runs deeper than the skin and beyond the body, reaching outward, arching backward. Not a singular illness story but, instead, a collection. Weaving her complicated experiences of disability, debility, neurodivergence, and madness together with her reflections on reproductive risk and choice, Wang exposes some of the ways biology is reconfigured in and through proximities to and relationships with power: individual and collective beliefs, stories, experiences, identifications, aspirations.

Wang’s narrative considers a mad inheritance not only as that which is passed down in blood or in genes but rather as an unbounded embodied situatedness that extends Wang across time, space, culture, and biology. For example, she describes being comforted by her diagnosis because it offers both community and lineage. This lineage is not just familial but also a patterned way of being experienced and recorded long before DSM categorizations. Wang demonstrates how, in addition to blood and genes, things like social discourses, assumptions, and beliefs about disabled people’s bodies, minds, lives, and futures are profoundly implicated in the reproduction of disability. “Once, I did want biological children,” Wang (2019, 83) remembers. “And then, hours after pausing in front of a children’s clothing store in San Jose, California, I did not.” She traces this change of perspective to a brief telephone conversation she had with her partner, following an introspective moment of observing parents shopping for “tiny peacoats and miniature blouses with Peter Pan collars” at the mall (83). Prior to the phone call in question, Wang relays that she had had several conversations with her partner about his desire to have children with her and that this was the first time she returned the sentiment. However tentative or meaningful it may have been, Wang’s brief expression of reproductive desire fell flat on the phone with her partner after he quietly mentioned speaking to his mother who reminded him that mental illness is genetic. “Oh. Never mind, then,” Wang responded. “Forget I said anything. I didn’t mean it” (83).

Alongside Wang’s reflections on what is reproduced in everyday social interactions—the unsolicited advice of well-meaning friends, the silence of lovers—she also reflects on how strangers have shaped her experience of herself as a reproductive subject. “I read in the New York Times that a child of a parent who has bipolar disorder is thirteen times more likely to develop the disorder than a child of a parent who does not,” Wang (2019, 89) recounts. She goes on to describe the experience of reading the comments section of an article in Salon on madness and motherhood written by a woman with bipolar disorder. The commenters described their childhoods as nightmares, as wishing they had not been born, that people requiring psychotropic medications should not consider having children. “I read all sixty-eight comments,” Wang admits, noting that these comments provoked memories of her mother expressing deep remorse and guilt for the suffering she had passed on to Wang. “Presently,” Wang writes, her mother “tells [her] that [she] would be better off not having children” (89).

In the history of eugenics, genealogy was used to identify both desirable and undesirable (degenerate) traits. Pedigree charts were painstakingly drawn out by eugenicists to track family histories and deduce patterns of inheritance to encourage the reproduction of the presumed fit and discourage or even eliminate the reproduction of those deemed unfit. As we have seen, traces of this eugenic history remain at the site of the sperm bank and in other reproductive industries, governing who is or is not fit for reproduction and which traits can or cannot be selected for. Sperm banks want assurances of good health status and the absence of genetic abnormalities, and so donors are required to divulge their own genealogies—personal and family medical history, details about personal accomplishments or pedigree. In a eugenic frame, a disability diagnosis is a blemish, a criterion of exclusion at the sperm bank. This form of discrimination is one part of why, as Wang (2019, 5) notes, “some people dislike diagnoses, disagreeably calling them boxes and labels.” Yet, Wang confesses that she’s “always found comfort in pre-existing conditions,” not because it extracts her from kin, as per a eugenic frame, but precisely because it situates her to form a relation to disabled kin and not be alone in “pioneering an inexplicable experience” (5). For Wang, “a diagnosis is comforting because it provides a framework—a community, a lineage—and, if luck is afoot, a treatment or cure” (5). While cure eludes, Wang does piece together community and lineage, bonds that enable her to find life, connection, and flourishing with schizophrenia.

As Wang grapples with her decision to not have children, two children appear as significant figures in her text: a young boy, Stuart, with whom Wang formed a bond when she was a counselor at Camp Wish, and Wang’s niece, K. Wang (2019, 80) found Stuart as she was searching for kin. Indeed, she submitted her application to work at a camp for kids with her own diagnosis because she “wanted to feel less alone.” Stuart, according to Wang, was the smallest of the five boys in her cabin at Camp Wish. He “was short, thin, and had his shirt perpetually tucked into his shorts, with tube socks pulled up as far as they could go” (81). Stuart yearned to make friends with the other kids, yet he struggled to do so. “He enjoyed playing games but exploded whenever a rule did not act in his favor,” Wang tells us. He “seemed unable to carry on a conversation unless it involved shouting science facts or reciting, in savant-like detail, the plots of the Harry Potter movies” (84–85). For this, Stuart was tormented, relentlessly, by his cabinmates, to the point where the camp decided it was best to move him to a new cabin. Stuart suffered deeply as a result of not making friends at camp, an anguish that was amplified by finding himself bullied even at a camp with other kids “just like him” (86). Wang, who accompanied Stuart to his new cabin, describes comforting him during a particularly difficult evening: “I was barely tall enough to reach the top bunk standing on my tiptoes, but I stood as tall as I could so that I could see him. ‘It’s okay,’ I whispered. He shuddered with discomfort, squeezing his eyes shut and periodically wiping tears away with the backs of his small hands. I told him to try and relax. I stroked his bangs with the palm of my hand. I hummed Chinese lullabies, and the longer I stood and stroked and hummed and whispered, the stiller he became, until he was asleep” (90–91).Wang’s partner observes this tender moment from outside the cabin window, later telling Wang: “You would make a good mother” (91). Wang remains unsure: “Would mental illness preclude me from being a good mother?” she wonders. “I was fine at camp. I took care of the boys. . . . But I hadn’t been suffering from mania or depression then, and I can’t imagine I would have been allowed to care for someone else’s children if I had” (91). She continues: “I’ve seen myself forget to feed my dog. I’ve seen myself remember, and then not care enough to do it. Sometimes I can’t even say more than two words or move. There are periods when I know my husband has been replaced by an identical robot. . . . Then again, mothers act badly all the time” (91–92).

Parenting someone with a mental illness like her own, Wang (2019, 92) confronts, “would be twenty-four hours a day, seven days a week, three hundred and sixty five days a year. Not one day at camp, or three days, or three weeks. A lifetime.” With this in mind, Wang reopens the question of having a child with her partner on the drive home from camp. Referring to Stuart, who was struggling as he left camp with his mother, she says, “We could have a child like that” (93). Wang’s statement is haunting. Upon first utterance, her statement seems haunted by a disability dread, which hails the eugenic impetus to eliminate disability. This sense of “We could have a child like that” might lead to genetic surveillance, monitoring, screening, intervention, engineering “a rearranging of things” that seeks to eradicate the difference disability makes. Yet forging disabled kin offers another way, haunting not by a dread of disability but rather as a way to support disability lineage and culture. Wang reflects: “For all my fears about constantly watching over a child with mental illness, or any other severe disability, the very reasons that I thought I didn’t want children might be the ultimate factors that would end up changing my mind. I was surprised by my love for Stuart. He was smart and hilarious, and knew a lot of fascinating trivia. He and I also shared a diagnosis, and perhaps that, most of all, is why I had patience for his tantrums and oddities. ‘We could have a child like that,’ I’d said—and indeed we could” (93). Having love and patience for Stuart through shared diagnosis is embedded in Wang’s sense of disabled kin and leads to different ways of relating outside of medical monitoring and eugenic intervention.

This move toward disabled kin is echoed in Wang’s love and worry for K, the other notable child who appears in the chapter. K is the infant daughter of Wang’s youngest brother. As with Stuart, Wang’s (2019, 85) relationship with K is characterized by love but also by worry: “K’s entrance into the world fills me with gut-churning anxiety,” she writes, an anxiety provoked by a world “in chaos” but also by K’s genetic inheritances. Wang fears that as her brother’s daughter, K will “inherit the genes that initiated [Wang] into the schizophrenias” (85). Wang writes: “As K’s aunt, I feel I must be vigilant when it comes to her mental health. Someday, if we are lucky, she will be a teenager. She will likely be feisty. At the same time, we know absolutely nothing about who she will end up becoming” (85). Wang’s fear about, and for, her niece is valid. But it is both/and. As Wang traces throughout her book, schizophrenia can be terrifying but also provides a life that can be lived. Here, watching and caring for her niece is both different from and the same as Hanson and Collins’s medical monitoring. It is the same in that they are aligned in their love and their fear of debilitation yet different in that one is about surveillance and cure, warding off the dread of disability, while the other is about developing and maintaining disability kin and culture. Wang’s narrative importantly presents us with some of the ways disability is itself, recalling Valentine, reproductive, how risk can be leveraged toward the expansion of various political and material possibilities, delivering us toward futures where disabled people and kin can thrive and flourish. As Valentine (2024, 241) argues: “If race and disability are productive forces . . . then we must transform their uses toward the construction of a more just society and reproductive future for all.” Doing so requires altering, building, and maintaining social, material, and cultural infrastructure that can support making disabled kin and what follows.

This kind of disability-centered kin-making is in part articulated by disability justice activists such as Stacey Park Milbern as a kind of “crip doulaing” that “makes disability futures real and viable” (quoted in Piepzna-Samarasinha 2018, 240). Crip doulaing is a form of care work that welcomes and maintains disabled people and communities, sharing ways of navigating everyday life by drawing on the collective knowledge, skills, culture, and creative solutions of disabled communities that can support disabled living. “I was the only disabled person in my immediate family,” Milbern tells Leah Lakshmi Piepzna-Samarasinha in their interview “Crip Lineages, Crip Futures,” “and they loved me but didn’t have tools for conceptualizing my life outside of brokenness needing healing or bootstrap mentality about ‘overcoming’ one’s circumstance” (242). This leads Piepzna-Samarasinha to respond, “It is radical to articulate that we [disabled people] have a past and lineages and cultures, in a world that says we are individual medical defects to be eliminated” (249). While, as Kafer (2019, 6–7) notes, “queer, Indigenous, and critical race theorists have long recognized kin as encompassing more than the biological and reproductive,” such affiliations can “include the deep affective ties that do not map onto heteronormative, homonormative, or reproductive categories.” Vis-à-vis eugenic isolationism and reproductive control, making disabled kin with each other and the specters that haunt us can provide radical opportunities for connection, belonging, and moving together toward a different future. Indeed, as Donna Haraway notes in an interview, “making kin seems to me the thing that we most need to be doing in a world that rips us apart from each other” (Paulson and Haraway 2019).

As is reflected both in the discourses surrounding the case of Donor 9623 and in Wang’s encounters with other people’s beliefs and understandings about her illness, the notion of a disability inheritance most often points to the reproduction of an (undesirable) genetic marker that gets passed down from biological parent to child. Eugenic logics and practices target this biological reproduction of disabled life. Almost always, as we’ve seen, a disability inheritance is understood as something to worry about and as something to avoid outright. Here Milbern also offers another way of thinking about disability inheritance, one where practices of kinship are crafted through treasured objects. “Crip hand me downs,” Milbern (2019a) tells us, are what gets passed down through lineages of disability culture and community. These hand-me-downs could be material objects—a good book, a DIY assistive device, a piece of clothing that fits just right—but can also be less tangible, like ideas, theories, and everyday hacks on how to move through an ableist world. In her interview with Piepzna-Samarasinha (2018, 240–41), Milbern describes crip practices of supporting one another in “learning how to get medicine, drive a wheelchair, hire attendants, change a diet, date, have sex” as ways of not only surviving but also developing resiliency and kin in the face of ableism and isolation; in other words, of living well with disability.

In an essay, Milbern (2019a) expresses the deep affective ties and importance of a pair of “crip socks” that had been gifted to her by the partner of late queer disabled poet Laura Hershey after her passing. The socks are made of brown leather and are easy for wheelchair users, like Milbern and Hershey, to wear out in public because they look like boots. Hershey had received the crip socks from another wheelchair user, the late Harriet McBryde Johnson, an American writer and disability rights attorney. “I don’t understand why I was the lucky recipient [of Hershey’s socks after she died],” writes Milbern, “but I am honored to be in this lineage. Wearing them made me feel powerful and good in my body.” For Milbern, the crip socks remind her that “our deepest relationships are with people we choose to be connected to and honor day after day,” breaking boundaries “like the nuclear family model or artificial nation state borders.” Milbern reflects on the way the crip socks ground her in a lineage of fierce disabled ancestors:

My ancestors are disabled people who lived looking out of institution windows wanting so much more for themselves. It’s because of them that I know that, in reflecting on what is a “good” life, an opportunity to contribute is as important as receiving supports one needs. My ancestors are people torn apart from loves by war and displacement. It’s because of them I know the power of building home with whatever you have, wherever you are, whoever you are with. My ancestors are queers who lived in the American South. It’s because of them I understand the importance of relationships, place and living life big, even if it is dangerous. All of my ancestors know longing. Longing is often our connecting place.

Crip socks, as a lineage of disability culture, leaves evidence that we do not need to be condemned to the same future that our eugenic past prescribes. However, a difference for disabled people and kin requires working with and from life altered and open to further alteration, and this takes concerted effort to build, maintain, and support. As Piepzna-Samarasinha (2022, 94) notes, disabled community is not just “waiting, ready-made.” Rather, “there is what we make. With a small, imperfect disabled cast of characters. With people who piss each other off and fail each other and make mistakes and don’t always know the right thing.” It is “little bit by little bit” that disabled kin can be formed and maintained, marking the specter of disability not as an object of dread but instead as kin through which new worlds can be built (94).

The possibility of the spectrum for 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 risk 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 and maintaining infrastructures of access, care, and supports for flourishing. Yet a haunting dread of disability entangled with forms of compulsory able-bodied/-mindedness continues to dominate contemporary discourses and practices of reproduction. This system of control operates precisely because of the ways in which disability is embroiled with targeted forms of abandonment and debilitation that leave disabled people and kin without adequate infrastructures of support. The mobilization of the spectrum to entrench individualized approaches to risk seeks to repair and maintain ourselves through enhancement, optimization, and early intervention. Put differently, instead of moving us toward a more expansive engagement with disability, the spectrum becomes sedimented as a vector of social control, a weapon of debilitation, a tool of eugenics and white supremacy, and a way of upholding oppressive social, political, economic, and environmental conditions. These practices work to turn the promise of disability—the essential and indeterminate spectrality and relationality of disability—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 also be selectively weaponized against us to support the targeted debilitation of particular—and often already marginalized—populations. For the dreaded ghosts of disability to move on, for being “fine right now” to be transformed into also being “fine” with the disability to come, we need to disconnect disability from such bio- and necropolitical weaponized practices of debilitation and concomitant practices of (white) capacitation, and embrace, support, and engage the “specific sensibilities and discourses” that disability offers (Ben-Moshe 2018). We need to break away from dread and instead learn from disabled ancestors and disability culture. We must forge disabled kin, including making kin with the specters of disability, so as to create communities that can offer us a different future.

As we’ve seen, the case of Donor 9623 does not end with biological determinism. This is not the story of risk realized; rather, it dwells in spectral risk: speculative futures, ongoing monitoring, and perpetual therapeutic controls. As we learn more about the indeterminacy of our genetic code, the fluidity of our inheritances, the dimensionality of our minds, and the interplays and interdependencies between the molecules that compose us and the environments that contain us, we are confronted with the contingencies and multiplicities 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 demonstrates, difference is so often used as an alibi for maintaining the normative order of things through the regulation and management of, and profiteering from, nonnormative bodies and minds, the spectral also whispers that things could be otherwise.

Disability is here, it is in our past, and it is also lurking around the corner. It is not something we have but something we participate in. In this way, we vitally need to support and maintain disability culture and disabled kin as much as we need health care, housing, and employment, for these are the means by which we can live well with disability. These are, in other words, the specific practices, sensibilities, and discourses that imbue disability not only with possibility but also with transformative meaning, value, and desirability. Embracing disabled kin 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. A turn toward nonindividualizing notions of embodied variation, the collective relationality of risk, and the indeterminacy of our differences also lays the groundwork for a renewed focus on environmental and structural inequities, which might, in turn, foreground new possibilities for building more accessible futures and improving the life chances of disabled people and kin.