I. Introduction

Early in 2016, the widely acclaimed film Me Before You premiered nationally to a spate of disabled-led protests against the ableism in the film's core story – that of a wealthy, physically disabled young man whose romantic and sexual relationship with a young woman hired as his caregiver (and quasi-maternal or mentoring figure) leads to his choice to kill himself to avoid living further while disabled, and to bequeath his assets to her. 1 Protested as a "disability snuff film" by leading groups like Not Dead Yet, disabled activists lambasted the film for its glorification of assisted suicide as a brave and heroic choice because of the protagonist's disability – criticizing the writers for sending a very strong message that it is better to be dead than to live as disabled, however that might be defined or understood. 2 U.S. law has often embodied that very same message despite the existence of civil rights protections for people with disabilities, and most particularly and glaringly in its adoption of wrongful birth and wrongful life claims as cognizable in tort. In this paper, I aim to provide brief context on the nature and history of wrongful birth and wrongful life claims, examine the myriad social harms toward disabled people 3 that stem from their assertion, explore non-ableist purposes for which these claims might be brought, and propose potential legal and policy mechanisms as alternative means for achieving their possible legitimate purposes without reliance on them.

II. Legal background of wrongful birth and wrongful life claims

Common law in U.S. jurisprudence did not traditionally recognize the torts of wrongful birth or wrongful life. Both of these claims are recent developments. Wrongful birth and wrongful life claims are distinct, although derivative, from wrongful pregnancy and wrongful conception claims. Wrongful pregnancy and wrongful conception claims are rooted in medical malpractice torts. The legal wrong in both wrongful pregnancy and wrongful conception claims is the actual pregnancy or the conception – these claims most often arose from reliance on incorrect medical information about a person's in/fertility or sterilization procedure (such as a doctor performing a tubal ligation procedure that did not actually serve its intended purpose of preventing a person from becoming pregnant afterward). In contrast, the legal wrong in wrongful birth and wrongful life claims is essentially (bringing into) existence a child considered to be "defective" because of a physical or mental atypicality. 4 For wrongful life claims, the actual life of the "defective" child is the supposed legally cognizable injury.

The disabled person (the "defective" child), not their parents, has direct standing to bring a wrongful life claim, which is why courts are generally unfavorable toward this tort, considering it an epistemological dilemma (the question of whether nonexistence is preferable or not to disabled existence) beyond the scope of the jurisprudential review. 5 In contrast, the parent(s) of a child who supposedly should not have been born are the only potential plaintiffs with standing to bring a wrongful birth claim, which rests on the narrative that the child born ought not to have been born but for a doctor's misinformation (either negligent or fraudulent) that deprived the pregnant person of the ability to make an informed reproductive choice. (Of course, the legal guardians of a minor child (disabled or nondisabled), who are typically the parents, may assert any claims on behalf of the child that the child has standing to bring, rendering the distinction all but meaningless.) In wrongful birth claims, the legally cognizable injury is contorted away from the birth, and toward reliance on incorrect medical advice, with the choice to conceive or give birth when the parent otherwise might have chosen not to conceive or give birth, as the product of that advice. The doctor's advice is construed as the proximate cause of the inability to make an informed choice as the injury suffered. In wrongful birth cases brought over disabled children, plaintiff parents may recover monetary damages for costs associated with supporting or caring for the disabled child that would not have been incurred but for the child's disability. Plaintiff parents have also stated claims and sought compensation for infliction of emotional distress due to giving birth to a disabled child, loss of society of a normal child, loss of consortium of a normal child, loss of services of a normal child, costs of supporting and caring for the disabled child past the age of majority (under the assumption of caretaking responsibilities continuing through the disabled person's adulthood), and all other costs associated with supporting the child including ordinary child-rearing costs not specifically related to the child's disability. 6

Similar to wrongful pregnancy and wrongful conception torts, wrongful birth torts initially followed the same narrative path, and for as long as parents brought these actions after the births of nondisabled children, courts treated them unfavorably. In 1967, however, the New Jersey Supreme Court in Gleitman v. Cosgrove became the first to issue a final ruling in a wrongful birth case centering on a disabled child, born deafblind with language and intellectual disabilities. 7 The court rejected both the child's wrongful life claim and the parents' wrongful birth claims. 8 More contemporary law has generally recognized wrongful birth claims as legally cognizable, with over half of all jurisdictions endorsing wrongful birth torts, while some states have enacted statutory bans on wrongful birth and wrongful life claims. 9

III. Contextualizing ableism in society

The contemporary legal landscape and jurisprudential history of wrongful birth and life torts does not exist in a vacuum separate from a profoundly ableist society. This paper aims to analyze the discursive and social impact of wrongful birth and wrongful life torts within the context of hegemonic ablenormativity – the cultural dominance of a pathology paradigm that assigns values of health, normality, worth, and functionality to normatively abled bodies while simultaneously marginalizing and medicalizing deviant bodies. Ableism flourishes within capitalism by devaluing any people who cannot conform to expectations for productivity, while deriving power from the reality of scarcity politics – where critical resources, including sustenance, healthcare, and shelter, are maintained at artificially scarce levels that for many disabled people, often pose serious risk to continued survival.

Within ableist society and the pathology paradigm, disabled existence is considered unworthy, lacking in value, and undesirable. Fear of perverse reproduction manifests in fear and disgust toward disabled bodies as embodiments of a freakish other or physical reminder of the vulnerability of abled people's bodies and the limits of stability or coherence. Disabled bodies are subject to institutionalization and mass incarceration, 10 questionable and sometimes painful and invasive treatments, 11 legal paternalism through substituted judgment doctrine, and imposition of guardianship (quasi-minority status throughout adulthood). 12 For people with mental disabilities, ableist mappings of sexuality (the potential for reproduction) are often trapped between the two competing ableist visions of desexualization (locating the disabled person as devoid of sexuality or sexual possibilities, and infant-like in innocence) and innate predation (locating the disabled person as a sexual menace, danger, or threat due to their presumptive incapacity for impulse-control, decision-making, or cognition). 13

In the context of reproductive decisions, the U.S. Supreme Court in 1927 upheld the legal permissibility of compulsory sterilization of "mental defectives" or "patient[s] afflicted with hereditary forms of insanity, imbecility, etc.," in order for society to "prevent those who are manifestly unfit from continuing their kind" and becoming "a menace" against the "welfare of society." 14 The Supreme Court has never overturned this decision, which recognizes the state's interest in controlling or restricting the reproduction of certain people. At the same time, disabled people who wish to parent routinely face discrimination in family and probate courts including arbitrary termination of parental rights solely on the basis of disability. 15 Pregnant people disproportionately choose to terminate their pregnancy when prenatal testing – devised to aid pregnant people and their partners in making informed reproductive decisions, including around viability economic resources for supporting potential children with disabilities – determines that the fetus is developing Down syndrome. 16 In contrast, since 2000, two cases of culturally Deaf parents (one lesbian couple and one heterosexual couple) rose to prominence as the parents in both cases sought to select for genetic traits associated with deafness. In the U.S., Sharon Duchesneau and Candy McCullough sought a private donor, a friend with five generations of deafness in his family history, to maximize likelihood of having a deaf child; only a few years later in the United Kingdom, Paula Garfield and Tomato Lichy sought to use in vitro fertilization as a means of genetically selecting for a deaf child to join their existing older child, also deaf. 17 Criticism focused on both couples' deliberate choice and preference for bringing a new deaf child into the world as both inherently harmful to the child and irresponsible on the part of the parents – all embedding ablenormative ideas about healthy (and socially desirable) versus damaged (and socially undesirable) bodies. Discourses of reproductive rights often implicate disability in reflections on whom society deems ought to reproduce and to be reproduced, particularly in relation to physical/mental attributes. 18

IV. Mapping ableism in wrongful birth and wrongful life claims

Given this social context, wrongful birth and wrongful life claims raise particularly stark concerns about discriminatory application against people with disabilities, especially as these actions challenge the bounds of traditional tort law. As scholars Wendy F. Hensel and Darpana M. Sheth have noted in analyzing use of wrongful birth and wrongful life claims under the Americans with Disabilities Act, disabled people have a very strong argument for targeted discrimination via use of these claims since they almost rely on an impaired or disabled person's existence as the basis for the argument. 19 Hensel notes that in the body of case law on wrongful birth cases arising from birth of a nondisabled child, courts have generally ruled against the claims in favor of promoting birth, while instead analyzing claims arising from birth of disabled children within the discursive framework of burden and lives not (or less) worth living. 20

The wrongful birth tort operates under the assumption that any pregnant person who discovers that the fetus will have a disability would naturally and by default opt to terminate the pregnancy even if the pregnant person otherwise intended to carry the fetus to term and to become a parent to a child – that is, that the injury is denial of the opportunity (that is presumed would have been taken) to abort. That assumption is inherently ableist because it implies that disability is such an undesirable or lesser state of being, that it would be natural and proper for a pregnant person to always choose unquestioningly to end a pregnancy that might have resulted in a disabled person. The rhetoric that it is better to be dead than disabled has real ramifications on disabled people's lives, including in research that shows that physicians are more likely to make more rapid life and death decisions when treating people with developmental disabilities, leading to high rates of preventable deaths, 21 and that advocates in several states now have introduced legislation to outlaw disability-based discrimination in eligibility determinations for organ transplantation following a handful of high-profile cases.

Further troubling, cases like the Massachusetts Viccaro v. Milunsky originally brought over ectodermal dysplasia (a congenital condition affecting hair, sweat glands, and teeth) advance claims not merely for extraordinary expenses associated with education and healthcare for a disabled child that would have otherwise fallen upon the family, but also advance claims for loss of society of a normal child, and loss of services of a normal child. 22 The claims for loss of society and loss of services relate directly to the claim of loss of consortium. 23 As scholar Joellen Lind explains, loss of society (or loss of consortium) as a cause of action derived from loss of services, which itself derived from a highly patriarchal conceptualization of heterosexual marriage – that a husband is entitled to the sexual services of his wife, and therefore a tortfeasor causing her death has inflicted legally cognizable harm onto him via his quasi-property interest in his wife's sexual services. 24 With development of shifting cultural roles even within heterosexual marriages, loss of society emerged as an alternative to loss of services, in that loss of society claims recognized specific injury via emotional harm and permanent loss of a partner (and the partner's attendant emotional connection and special emotional relationship with the surviving partner) upon wrongful death. 25 Under this line of reasoning, the wrongful birth claims advanced in Viccaro actually presume that a disabled child who is still living – rather than a spouse (with or without a disability) who has died as a result of a tortfeasor's wrongful actions – is incapable of providing love, companionship, and emotional relatability due to disability such that the parent has suffered compensable harm for not having a nondisabled child. On a related note, the claim for loss of services of a normal child also presumes that children ought to fill a social role of obligation and servitude toward parents (seemingly also a remnant of a hyper-patriarchal notion of family structure) rather than parents holding responsibilities for the wellbeing of their child and providing services or labor to support their child's development. Additionally, the parents in Viccaro brought claims for emotional distress caused by giving birth to a disabled child, which characterizes severe distress as an appropriate and proper reaction to the existence of a disabled person – an incredibly dehumanizing assertion that also emphasizes a nondisabled parent's reaction to a disabled child as so horrified that it warrants compensatory damages as a harm to the nondisabled parent. 26 The court in Viccaro ultimately decided against the claims for loss of society, loss of services, and emotional distress, but the rhetoric surrounding those claims nevertheless evidences the rhetorical ableism embedded in wrongful birth and wrongful life suits arising from disabled children's births.

Compounding the issues raised by the loss of society, loss of services, and emotional distress claims included in the Viccaro complaint, wrongful birth actions also pose a particular challenge to the history and principles of the disability rights movement even apart from discursive devaluation of disabled life. As only a parent of a disabled child has standing to bring wrongful birth actions, the individual who is actually most affected by the disability – the disabled child themself – cannot be recognized by a court to assert the claim. Proponents might suggest that the disabled child could avail themself of the potential benefits of the action by filing a wrongful life claim instead, but as wrongful birth torts are far more recognized than wrongful life torts, such a claim would likely fail. Without the means to access the possible tort on their own, that situation leaves the disabled child unable to take ownership or direction in the proceedings initiated ostensibly to seek redress for suffering the child themself might experience due to existing while disabled, or monetary damages to cover costs for disability-related services or health care the child themself might need or want.

V. Other purposes of wrongful birth & wrongful life claims

Proponents of wrongful birth and wrongful life claims may point to a variety of purposes these lawsuits may serve that do not necessarily derive from a plaintiff's ableist values, but rather reflect the realities of living in an ableist and capitalist society. The existence of wrongful birth and wrongful life claims serves to strengthen pregnant people's right to informed decision-making (essentially, an informed choice) in choosing whether to terminate or continue a pregnancy; the availability of this legal mechanism for seeking redress for misinformation establishes a legal means of ensuring meaningful reproductive choice. 27 Relatedly, the possibility of needing to defend against a wrongful birth or wrongful life claim may disincentivize doctors and genetic counselors from providing false or misleading information to pregnant people and any co-parents about likelihood of conceiving a fetus with certain congenital disabilities. 28 Specific to claims arising from a disabled child, parents may seek to bring wrongful birth lawsuits or assert wrongful life claims on behalf of their child in an attempt to recover monetary damages for the purpose of providing financial support for a disabled child in a resource-scarce and capitalist society where daily survival requires access to financial resources, or to compensate for the redistribution of financial resources if the parents have other children or intend to have further children afterward. 29 Parents in that position need not personally hold ableist internal beliefs about their disabled child's quality of life, or whether that child's life is worth living, or whether they regret conceiving and giving birth to that child; however, to assert the claim successfully, the parent must nevertheless argue publicly that the child's disability is sufficiently devastating (in an intensely medicalized and dehumanizing narrative) as to warrant recovery. 30 If the child lives to adulthood (as many people with disabilities do), the child may then also discover the existence of the lawsuit, as well as the arguments their parents would have had to have made to assert the wrongful birth suit – that discovery may be an unintended consequence, but undoubtedly could have severe and long-lasting psychological effects on a person already subject to marginalization as disabled. 31

In a capitalist world where an individual person's value is determined by quantity and rate of economic production, a lower-income household is at a significant disadvantage for providing appropriate support and services for a disabled child regardless of whether the child is wanted. Thus, while a parent with lower income and few to no assets would benefit the most from recovering monetary damages from wrongful birth or wrongful life actions, that same parent (who is also statistically likely to belong to other marginalized or targeted groups on their own) is also significantly less likely to have meaningful access to the courts or an attorney with sufficiently specialized knowledge of tort law to consider asserting such claims, let alone to do so successfully. The class implications of wrongful birth and wrongful life actions do not lend themselves to neat and clearly organized answers as to the social utility, equitability, or morality of the existence of those actions, but that very reality suggests that the compromise approach – allowing for the morality of these actions if only for the potential financial benefit for the disabled child in a fundamentally flawed socio-legal context – cannot be adopted.

Another use of a wrongful birth action not arising directly from the birth of a disabled child includes a case brought in 2000 by an incarcerated person who was impregnated and gave birth after rape by a state prison guard (Daniels v. Delaware). 32 Daniels suggests a utility for wrongful birth lawsuits that would support an argument for maintaining or even strengthening the cause of action as a means of obtaining redress for births that ought not to occur due to sexual violence in a state-controlled institution – applicable not only to penal institutions, but also to psychiatric and developmental disability institutions. Some of the same concerns still apply to a child at the heart of such a case even if that child has no disability at all, as that child may upon growing older learn of the lawsuit as well as the underlying facts that led to it, and feel devalued and as though their existence is a mistake, despite the potential for personal healing and material support that the suit could have brought the birthing parent who was originally subjected to horrific violence and trauma in bringing that child into existence.

A further use of the wrongful birth claim not arising from the birth of a disabled child includes a case brought in 2014 by a white lesbian couple after in vitro fertilization using sperm from an anonymous Black donor instead of the white donor the couple had intended to have so that their child would racially assimilate into their nearly all-white neighborhood and school, and not cause the parents discomfort due to their own lack of exposure to and experience with people of color in their lives prior to giving birth (Cramblett v. Midwest Sperm Bank, LLC). 33 Cramblett exemplifies the pernicious intersection of racism and ableism that is already pervasive throughout U.S. legal theory and practice – in this case by applying eugenic standards (necessarily rooted in determination of desirable and undesirable physical characteristics, rooted in complex intersections of race and disability) to enact a vision of racial purity and unambiguous whiteness for the comfort and the convenience of a child's white parents. The fact that someone considered this particular usage of the claim viable would suggest the need for a higher level of scrutiny for the tort and its potential uses for various questionable and harmful purposes even beyond facially obvious ableism.

VI. Finding alternatives in tort law & public policy

One possible remedy available to parents seeking compensation for an unanticipated disabled child is to avail themselves of existing torts other than wrongful birth and wrongful life – such as the torts of wrongful pregnancy or wrongful conception, or alternatively, torts of fraud or of medical malpractice. If a doctor's actions in utero actually cause a child's disability that otherwise would not have been present, then the doctor could be held liable for those actions causing the legally cognizable injury of impairment that would not have existed but for the doctor's malfeasance, without suggesting rhetorically that the child's birth itself is the cognizable injury. Similarly, the torts of wrongful pregnancy and wrongful conception center on a doctor's malfeasance in providing incompetent obstetric or gynecological care that led to an unwanted and unexpected pregnancy altogether, rather than on a disabled child's existing life or hypothetical nonexistence as compared against the life of a hypothetical nondisabled child. Other potential remedies aimed at preventing propagation of incorrect information in genetic counseling and reproductive health care include statutory changes for required or prohibited disclosures during genetic counseling and prenatal testing. If health care providers are required by law to provide scientifically accurate information about nature of potential impairments in a fetus, and prohibited from withholding information if the pregnant person and any co-parent requests it, then the providers could assume liability for fraudulent or misleading statements on their own without tying such statements to the existence of a disabled person's life. Asserting other claims that do not rely on dehumanization and devaluation of a disabled child's life (and by extension, the lives of all others similarly situated) could lead to similar recovery in monetary damages to be used for educational, health care, or other proper purposes for the support and care of a disabled child.

Apart from recognizing the harm in rejuvenating wrongful birth and life claims – as much, but certainly not all, of the existing case law records suits filed prior to 2000 – advocates concerned with addressing ableism might advocate for increased funding for legal and social services to assist people with disabilities and family members in obtaining appropriate and necessary educational and health care services; better training for health care providers and social workers on models of care that support people with disabilities in self-determination and self-advocacy; and other measures to minimize the socioeconomic and psychological impacts of living in an ableist world while disabled. Some of those reforms could occur through improvement of education, healthcare, and other social services infrastructure to lessen the impact of scarcity and ablenormativity on a disabled child's life once born, overall lessening the financial cost of supporting a disabled child. Other policy initiatives could include increase availability and reimbursement caps for respite services, which provide caretaking to supplement often unpaid hours of caregiving by a primary caregiver typically related to the disabled person receiving services. These measures might ultimately lessen the societal or extrinsic pressures that may influence a pregnant person's choice of termination or continuance of a pregnancy toward one outcome or the other, when the pregnant person would otherwise not have changed their choice, also acting prophylactically against a future wrongful birth claim.

On the broader social scale, disabled activist Ki'tay Davidson rejects the socioeconomic argument for pursuing wrongful birth and wrongful life lawsuits, and instead articulates a vision of a society not dependent on or operating within a capitalist or ableist framework. 34 In such a non-ableist world, no person would have need of acquiring vast reserves of presently nonexistent financial resources in order to live a whole life with whatever necessary care or support, which would obviate the ostensibly more benign and less ableist purpose for asserting wrongful birth and wrongful life torts arising from a disabled child. If we were to adopt the values that Davidson articulates, we would need to change the fundamental social conditions that currently maintain scarcity of resources and uphold ablenormative standards for education, labor, and other aspects of life. With those social conditions eliminated, it would no longer be necessary for any parent or other caregiver to levy an intensely problematic legal argument for the sake of obtaining otherwise inaccessible supports, services, or health care. Beyond public policy and legal reforms, however, the pervasive societal ableism embedded in wrongful birth and wrongful life claims would significantly decrease by changing the culturally dominant narrative from the pathology paradigm and its attendant discourse of burden, pity, presumed suffering, and tragedy, and moving toward recognition of disabled people as whole persons deserving not only care but full social integration and self-determination.