American Journal of Law & Medicine

Disability, Ambivalence, and the Law

CONTENTS  I.   INTRODUCTION II.  NON-TREATMENT, ABORTION, AND DISABILITY RIGHTS      A. Baby Doe and Selective Non-Treatment      B. Prenatal Testing and Selective Abortion      C. Reconciling Responses from Disability Advocates III. A DESCRIPTIVE THEORY OF AMBIVALENCE AND DISABILITY      A. Ambivalence and Selective Non-Treatment      B. Ambivalence and Selective Abortion      C. Ambivalence and Disability IV. A NORMATIVE THEORY OF AMBIVALENCE, DISABILITY, AND     THE LAW     A. Acknowledging Ambivalence about Disability     B. Acknowledging Ambivalence and Selective Non-Treatment     C. Acknowledging Ambivalence and Selective Abortion V.  AMBIVALENCE AND DISABILITY LAW     A. Education and the IDEA     B. Employment, Disability Benefits, and the ADA     C. Medical Care, Life, and Death VI. CONCLUSION 

In this Article, I advance a new frame through which to organize discourse on disability and the law: the notion of ambivalence. I make two claims, one descriptive and one normative. Descriptively, I argue that ambivalence pervades encounters with disability. Disability attracts because it is a force that makes us human and disability repels because it is a force that threatens our humanity. The tension between these sentiments is not easily tolerated and tends to prompt denials of ambivalence; we embrace a conscious view of disability that belies our mixed sentiments and we suppress reactions to disability that conflict with this conscious view. Normatively, I argue that the law should express and expose ambivalence about disability. When we deny ambivalence, I argue, we cannot account for our genuine sentiments and we cannot prevent suppressed sentiments from emerging, intensified, in harmful and unanticipated forms. To avoid these dangers, the law should prevent the embrace of unequivocal views of disability as valued, devalued, or neutral, and seek to expose ambivalence about disability to the public. This prescription calls into question the prevailing orthodoxies of disability law.

I. INTRODUCTION

Scholars speak of disability with reference to a pair of tired descriptive models. The medical model casts disability as a biological impairment synonymous with illness. By this view, disability is an undesirable deviation from normal human functioning. The social model, by contrast, casts disability as a social construction like race. By this view, cultural practices transform differences into disabilities. (1) Neither of these descriptive models necessarily incorporates a particular norm of justice or a particular notion of the value of disability. (2) It has long been clear, however, that adherents of the social model tend to cast disability as a difference we should celebrate, and that adherents of the medical model tend to cast disability as a difference we should eliminate. (3)

It is no secret that neither of these views fully captures our collective intuitions about disability. The social model is surely right to describe disability as a product of social ordering, yet it does not acknowledge that some disabilities may be undesirable within all plausible systems of social ordering. The medical model recognizes this possibility in its focus on impairment, yet it does not acknowledge that even as disability imposes limitations, it may enrich our lives. Given the symmetry between the strengths and shortcomings of the two models, various scholars have pushed for a vision of disability that combines them. (4) Nonetheless, discourse on disability continues to revolve around this stark dichotomy, as does discourse on disability and the law. (5)

In this Article, I seek to break this conceptual gridlock, which I believe hinders our capacity to confront disability honestly and forthrightly in the law. I argue that ambivalence pervades our encounters with disability and that the law should express this ambivalence rather than strive for abstract conceptual clarity. (6) To be clear, I do not seek to advance a new definition of disability to compete with the definitions advanced by the social and medical models. Rather, I take as given that our society will tend to agree that certain characteristics shall be labeled as disabilities. My aim is to characterize how we relate to those characteristics and assess what this means for the law. This task combines descriptive and normative arguments.

Descriptively, I argue that disability elicits ambivalence and that this ambivalence is typically denied. It is not merely that both the social and medical models contain elements that might be put to good use in a unified model of disability. Rather, the conceptions of disability reflected in these approaches mirror sentiments simultaneously present within the disability community, individual disability advocates, and society more broadly. Disability attracts because it is a force that makes us human and disability repels because it is a force that threatens our humanity. As with so many conflicting sentiments, these two views are difficult to maintain in concert. Often, one or both sentiments are denied, yielding an unequivocal vision of disability as valued, devalued, or neutral. (7) The suppression of a sentiment from conscious awareness, however, does not eliminate it; instead, the sentiment may emerge, intensified, in unanticipated ways.

I introduce this descriptive argument through a case study on a pair of related issues: selective abortion on the basis of prenatal disability, and selective nontreatment on the basis of neonatal disability. (8) These two issues raise the same general question: when may prospective parents terminate a nascent life because of disability? Disability advocates have reached quite different conclusions in the two contexts. They argue that neonatal non-treatment on the basis of disability should never be permitted, but they have not sought restrictions on fetal termination on the basis of disability. Social context and abortion politics have no doubt influenced these conclusions. Yet beneath the conclusions lie contradictory visions of the meaning of disability; in one context, disability is valued, and in the other context, it is devalued. These contradictory visions, I argue, reflect feelings of ambivalence about disability that pervade the disability community and society more broadly. (9)

Normatively, I argue that the law should express and expose ambivalence about disability. Denials of ambivalence have two important consequences. First, they yield the embrace of a conscious view of disability that does not reflect the full range of sentiments we may possess. Second, they suppress, for a time, sentiments that conflict with our conscious view of disability. The first consequence threatens to produce policies that do not respond fully to our understandings about disability. The second consequence threatens to give rise to harmful, guilt-ridden conduct, as suppressed views emerge intensified and in destructive forms. To avoid these consequences, the law should seek to prevent denials of ambivalence by structuring the law to reflect ambivalence about disability and by bringing ambivalence about disability into the public's collective consciousness. That is, the law should seek to both express ambivalence about disability within itself and expose ambivalence about disability more broadly.

These prescriptions will often suggest ambiguous and contradictory legal regimes. This may seem troubling. The notion that we should express and expose ambivalence about disability in the law departs from traditional conceptions of discrimination, social welfare, and social justice in the realm of disability. On a deeper level, ambiguity and contradiction are seldom welcomed in law; they are begrudgingly accepted, if that. The stakes for such acceptance here, however, are significant. Attention to ambivalence is only one consideration in structuring the law's treatment of disability, which implicates a range of values sounding in fairness, efficiency, and the like. Yet to address these values in the manner we intend, we must acknowledge our ambivalence. As I intend to show, the law currently expresses ambivalence about disability in many areas. It is not clear, however, that the law does so in the best way possible.

The Article proceeds as follows. The following two Parts develop a descriptive theory of ambivalence about disability. Part II introduces the case study that organizes much of the discussion, describing how disability advocates have addressed selective non-treatment and selective abortion. Part III argues that the disability community's approach to these issues reflects a broad social ambivalence about disability. The final two Parts develop a set of normative prescriptions as to how the law should address this ambivalence. Part IV contends that the law should express and expose ambivalence about disability; it then examines what this prescription suggests for legal regulation of selective non-treatment and selective abortion. Part V explores what this prescription suggests for federal disability law more broadly, focusing on education, employment, and healthcare. I conclude with a discussion of disability rights and ambivalence about disability.

II. NON-TREATMENT, ABORTION, AND DISABILITY RIGHTS

Begin with a puzzle. Selective non-treatment and selective abortion raise variants of the same basic question: is it acceptable for prospective parents to choose death for their nascent offspring rather than life with a disability? The disability community has responded quite differently in these two contexts. With respect to selective non-treatment, it has answered no, advancing a vision of disability as a valued difference. With respect to selective abortion, it has answered yes, accepting a vision of disability as a devalued difference. Therein lies the puzzle: why the different views of disability? It is no doubt significant that selective non-treatment and selective abortion occupy opposite sides of a vital biological process: birth. This Part argues, however, that to explain the disability community's disparate views of disability in these two debates requires that we look beyond abortion politics and, ultimately, to ambivalence about disability.

A. BABY DOE AND SELECTIVE NON-TREATMENT

Modern discourse about selective non-treatment invariably returns to the Baby Doe controversy. Born in 1982 with Down syndrome and a blocked esophagus, Baby Doe required immediate surgery to save his life. (10) Although the surgery would

have been routine and low risk, the infant's treating physicians at a Bloomington, Indiana, hospital disagreed about the proper course of action. One group suggested immediate surgery. The other group suggested that the infant be allowed to die. After a short deliberation, the child's parents chose the latter course. (11) They reasoned that people with Down syndrome could not achieve a "minimally acceptable quality of life," and that death would be best for the baby, the family's other children, and the family as a whole. (12)

A strict reading of the law at the time raised the possibility that the parents, physicians, or hospital could be held criminally liable for this choice. (13) The hospital accordingly sought a declaratory judgment in Indiana state court, which convened hours after the child's birth. (14) In a sparse opinion, the court held that the infant's parents had a right to choose a "medically recommended course of treatment" for their child. (15) As the judge later explained, "It could not be said that the parents were not acting in the best interests of the child." (16) On appeal by the county's deputy U.S. Attorney, the Indiana Supreme Court refused to intervene. (17) The infant died while the Attorney flew to Washington, D.C., to seek review from the Supreme Court of the United States. (18)

The case generated a national furor, fueled by abortion politics. The right-to-life movement seized upon the controversy as an opportunity to broaden its appeal and challenge the internal logic of the pro-choice movement. (19) President Ronald Reagan took a personal interest in the case, as did Surgeon General C. Everett Koop. (20) A few weeks after Baby Doe's death, Reagan directed the Department of Health and Human Services to address selective non-treatment as a civil rights issue under section 504 of the Rehabilitation Act. (21) The Department issued regulations requiring hospitals to post notices that selective non-treatment violated federal law. (22) The regulations also established a national hotline to enable anonymous tips to reach federal investigators. (23)

Disability groups aligned themselves with these efforts. More than right-to-life advocates, these groups highlighted the role of misinformation about disability in non-treatment decisions. In its position statement on selective non-treatment, for example, the Association for Retarded Citizens (ARC) argued that physicians, parents, and lawyers should be educated about the outlook for life with an intellectual disability. (24) Still, disability advocates reached the same policy prescription as right-to-life advocates. The ARC concluded that even with full information, physicians and parents should have no right to withhold treatment "where the only basis for such a decision is the diagnosis or prognosis of mental retardation." (25) Similarly, the Association for People with Severe Handicaps defended the "right to equal medical treatment for all infants ... as protected by the Constitution and Bill of Rights." (26)

In the words of Mary Johnson, a prominent spokesperson of the disability rights movement, the movement espoused "the right to live, no matter how deformed." (27) It affirmed, in her words, that "[a] people's right to the resources of a society does not hinge on those people's color, creed, national origin, or circumstances of birth," and that "circumstances of birth include 'deformity." (28) Disability advocates also voiced the importance of countering the "misguided assumption that the ability to perform all the potential capabilities imbued in the entire body is the ultimate criterion which should be applied in evaluating human beings." (29) As Harlan Hahn argued, advocates needed to refute the "unspoken assumption that life with a disability signifies a fate worse than death" by "ensur[ing] that people with disabilities are permitted to live in a society which affords them the same rights and opportunities as their nondisabled counterparts." (30)

In 1982, disability advocates and right-to-life advocates began to coordinate their efforts in litigation, legislation, and the media. (31) These efforts produced mixed results. Disability rights groups contributed as amici curiae in a series of cases concerning the legality of the Baby Doe regulations promulgated by the Department of Health and Human Services. In defending the application of section 504 to selective non-treatment, advocates analogized prejudice against people with disabilities to prejudice against racial minorities and women. (32) They argued that section 504's protections began at birth and that disability should not be an appropriate consideration in neonatal treatment. (33) The courts, however, struck down the regulations for inadequate procedure (34) and improper construction of congressional intent. (35)

The disability community and its allies in the right-to-life movement achieved greater success before Congress. National medical organizations mobilized against the Baby Doe regulations and attempts to apply section 504 to neonatal treatment decisions. (36) The medical organizations, however, responded more favorably to the possibility of governing these decisions under federal child abuse law. In 1984, representatives for the disability community and the medical community agreed to a set of common "Principles of Treatment of Disabled Infants." The Principles stipulated that discrimination on the basis of disability, regardless of severity, "is morally and legally indefensible" from birth. (37 The Principles emphasized that an "individual's medical condition should be the sole focus of the decision. These are very strict standards." (38)

The resulting legislation reflected a comparable view. (39) The Child Abuse Amendments require that all infants receive medically indicated treatment subject to three exceptions: (1) if the infant is "chronically and irreversibly comatose," (2) if treatment would (i) "merely prolong dying," (ii) "not be effective in ameliorating or correcting all of the infant's life-threatening conditions," or (iii) "otherwise be futile in terms of the survival of the infant," or (3) if "provision of such treatment would be virtually futile in terms of the survival of the infant and the treatment itself under such circumstances would be inhumane." (40) Since the mid-1980s, the issue of selective non-treatment has faded from the public consciousness. Ostensibly, so-called quality of life considerations remain inadmissible in such decisions.

B. PRENATAL TESTING AND SELECTIVE ABORTION

No single controversy has dominated social discourse on selective abortion. The advent of amniocentesis and chorionic villus sampling in the 1950s and 1960s prompted a steady growth in prenatal testing and selective termination. (41) Although these procedures raise risks of miscarriage and fetal injury, they have been common since the 1970s. (42) In 1983, the American College of Obstetricians and Gynecologists issued guidelines recommending that all pregnant women thirty-five and older be offered amniocentesis to test for Down syndrome. (43) In 2007, the organization extended that recommendation to all pregnant women. (44) Public demand and tort liability have propelled the development of safer, cheaper, and less-invasive tests available earlier in pregnancy. (45) The consequences have been dramatic: studies place the abortion rate for prenatally diagnosed Down syndrome--Baby Doe's disability--between eighty and ninety percent. (46)

Although some disability advocates have expressed concerns about selective termination, most national groups have remained silent. A 1980 taskforce of the ARC could not reach a consensus on the issue; the taskforce reported that it was "divided on the basic issue of whether it should be legal to abort a damaged fetus, although among members of the Task Force, as among the public, the majority find in the affirmative." (47) The group, however, expressed concerns that the practice might "impute a 'less valued' status to newborn infants or other living persons with these handicaps." (48) Neither the Arc nor the American Association on Intellectual and Developmental Disabilities, (49) organizations that played a prominent role in the Baby Doe controversy, has issued position statements on the matter.

Among individual advocates critical of selective abortion, the prevailing critique has been concerned with informed consent. This critique is most associated with Adrienne Asch. Asch argues that choices for selective abortion are driven by popular assumptions that people with disabilities destroy marriages and "lead lives of relentless agony." (50) She adds an "expressivist objection" that abortion on the basis of disability conveys "negative or discriminatory attitudes not merely about a disabling trait, but about those who carry it." (51) Ultimately, however, Asch does not argue that disability should be an impermissible consideration in decisions for abortion. She contends, instead, that the law should ensure that "our decisions [are] thoughtful and informed, not thoughtless and automatic." (52)

In arriving at this conclusion, Asch and other disability advocates have acknowledged that "the experience of disability does not neatly reflect the experiences of [race and gender groups] for whom negative judgments about their personal characteristic have been exposed as resulting solely from oppression." (53) As Asch writes, "the inability to move without mechanical aid, to see, to hear, or to learn is not inherently neutral. Disability itself limits some options." (54) From this viewpoint, the danger in selective abortion lies in the prejudice that it reflects and perpetuates apart from such real differences. (55) Accordingly, disability advocates have attacked unexamined assumptions underlying prenatal testing, the information physicians communicate alongside prenatal diagnoses, and what advocates perceive to be a presumption in favor of abortion. (56)

A few disability groups have broken the broader silence and echoed this approach. The National Down Syndrome Society has argued that expectant parents should be "informed as to the purpose of the various screening and diagnostic prenatal tests" and "given information on the risks, limitations and expense" of each test. (57) It has urged collaboration between the disability community and medical professionals to ensure that this occurs. (58) Similarly, the National Down Syndrome Congress has voiced goals to "[i]mprove the regulation of informed consent and disclosure of information regarding prenatal testing," "[e]nhance training about Down syndrome" for medical professionals, and educate parents who receive a positive test. (59) The Trisomy 18 Foundation has been most frank: it counsels that after a prenatal diagnosis "there is no magic choice that will make this experience easier." (60)

To ensure that decisions are informed, these organizations turned to Congress. Their efforts yielded the Prenatally and Postnatally Diagnosed Conditions Awareness Act of 2008, (61) which includes a series of measures to improve the information accompanying diagnoses. (62) The Act authorizes federal funding to "collect, synthesize, and disseminate current evidence-based information relating to Down syndrome or other prenatally or postnatally-diagnosed conditions," as well as to coordinate support services for parents and prospective parents receiving such a diagnosis. (63) Support services include education programs for healthcare providers, a telephone hotline, and an expanded information dissemination center. (64) The Act allotted these services a maximum of $5 million annually for five years. (65) Introduced by Senators Ted Kennedy and Sam Brownback, this legislation brought right-to-life advocates and disability advocates into another momentary alliance. (66) Unlike selective non-treatment, selective abortion has remained removed from national consciousness, though Sarah Palin and her son Trig brought the issue to the fore at points during the 2008 presidential election.(67) Few members of Congress took note of the 2008 legislation, which passed unanimously in the Senate and by a voice vote in the House. (68) Like the text of the Act, congressional discussion revolved around the need for information and ignored what prospective parents should be expected to do with such information. (69) Although disability advocates have acknowledged parallels between selective non-treatment and selective abortion during the Baby Doe controversy, (70) these comparisons were absent in discussions of the bill. By focusing on informed consent, advocates sidestepped questions about when it is acceptable to choose abortion.

C. RECONCILING RESPONSES FROM DISABILITY ADVOCATES

How should we think about the relationship between these two responses? In one context, disability advocates have cast disability as a difference worth protecting, arguing that it cannot be considered in decisions for neonatal nontreatment. In the other context, disability advocates have cast disability as a difference not worth protecting, accepting that it may be grounds for abortion. On the surface, there might not appear to be much tension between these different policy positions. Although ethicists like Peter Singer have criticized distinctions between newborns and fetuses,(71) the birth process retains profound significance as a legal and cultural marker. Surely, this distinction has played a role in shaping the policy prescriptions advanced by disability advocates. Yet it cannot, in my view, satisfyingly account for why disability advocates have described disability as a valuable difference in discussions about selective non-treatment and as an undesirable difference in discussions about selective abortion.

In addressing selective non-treatment and selective abortion, the line between fetus and newborn cannot be easily ignored. Samuel R. Bagenstos has defended the coherence of the disability community's positions on these two issues with the simple observation: "[i]nfants, unlike fetuses, are clearly 'persons."' (72) While the law recognizes a state interest in protecting fetuses, (73) it is hardly controversial that fetuses possess considerably fewer rights than newborns. Political considerations, moreover, have no doubt pressured disability advocates to be more cautious about seeking restrictions on abortion than non-treatment. The disability rights movement has traditionally aligned itself with the political left, including on the issue of abortion. (74) It is at least plausible that restrictions on selective abortion could yield more costs in eroded political alliances and abortion rights than benefits for traditional notions of disability rights, (75) More circumstantial forces may also explain the different policy positions; in the selective non-treatment context, a visible controversy galvanized disability advocates, whereas in the selective abortion context, no such controversy has been forthcoming.

Nevertheless, the line between newborn and fetus can only get us so far. As to legal doctrine, current jurisprudence on abortion does not render restrictions on selective abortion impossible. Procedural barriers and informational requirements for selective abortion would likely withstand scrutiny. (76) Although a nondiscrimination requirement akin to the Child Abuse Amendments would raise unaddressed questions about the content of the constitutional abortion right, it's possible such a requirement would survive under current law. (77) AS to political considerations, these too are hardly dispositive. Some feminists have argued in favor of restrictions on sex-selective abortion, which arguably would pose a threat to abortion rights similar to that posed by restrictions on disability-selective abortion. (78) The threat to disability rights from disability-selective abortion, moreover, is arguably greater than the threat to women's rights from sex-selective abortion; the rate of disability-selective abortion is in a different league. (79) More circumstantial explanations are also unsatisfying; disability rights groups declared their opposition to selective non-treatment prior to the Baby Doe controversy and had taken notice of selective abortion by the time of that controversy. (80)

These caveats notwithstanding, the distinction between newborn and fetus provides at least a plausible explanation for the disability community's opposition to selective non-treatment but acquiescence in selective abortion. This distinction does not, however, provide any explanation for the different visions of disability endorsed by disability advocates in discussions about these two issues. It may be that disability advocates simply do not view fetuses and newborns as comparably worthy of legal protections, and, if this is so, it explains why advocates have not sought restrictions on selective abortion like those they have sought on selective nontreatment. Or it may be that disability advocates were more willing to fight an uphill legal battle about selective non-treatment than selective abortion given the political considerations relevant in these two contexts. Or it may be that circumstantial forces have energized disability advocates against selective non-treatment more than such forces have energized the same advocates against selective abortion. But none of these explanations has any bearing on the underlying value of disability.

Of course, the disability community's discussions of disability in these two contexts have taken place within political debates infused with rhetoric. Disability advocates may have advanced a more categorical position in debates about selective non-treatment because they thought such rhetoric would be to their advantage. Or perhaps disability advocates have struck a more conciliatory tone in the context of selective abortion because they have not yet encountered an opportune political moment to forcefully challenge this practice. These rhetorical explanations ignore the deeper content of these discussions, which I will address shortly. But for present purposes, it suffices to say that even if these explanations could fully account for the differing statements about disability in these two contexts, they reveal a conceptual slipperiness about the value of disability, even within the eyes of the disability community. In the next Part, I locate that slipperiness in broader sentiments of ambivalence about disability.

III. A DESCRIPTIVE THEORY OF AMBIVALENCE AND DISABILITY

The notion of ambivalence has roots in psychoanalytic thought. It denotes contradictory sentiments directed toward a single object. Classically, ambivalence refers to feelings of love and hate for the same person at the same time, (81) though it may take on other forms; there are many reasons we might feel both attracted to and repulsed by an aspect of our surroundings or our identities. (82) Such conflicting feelings can be difficult to maintain in concert. As Freud put the point in Totem and Taboo, these feelings can become "so localized in the psychic life that they cannot meet." (83) In such cases, one sentiment tends to be embraced and the other suppressed. (84) Both views exist within the individual; which view the individual embraces and which she suppresses will depend on social stimuli. In different contexts, therefore, ambivalence may be expressed differently and produce the appearance of contradiction. (85)

This Part argues that social responses to selective non-treatment and selective abortion reflect ambivalence about disability. These responses betray a vision of disability as at once a valued difference and a devalued difference. The discomfort wrought by this contradiction has generally led the disability community to deny its ambivalence and embrace a vision of disability as a valued difference. In the neonatal context, disability advocates have advanced a view of disability consistent with this denial. Powerful doubts, however, lie beneath the surface. In the prenatal context, contrary sentiments have emerged, with disability advocates describing disability instead as a devalued difference. Once again, doubts lie beneath the surface of these statements. In what follows, I first detail ambivalence about selective abortion and selective non-treatment, and then I locate these mixed emotions in ambivalence about disability.

A. AMBIVALENCE AND SELECTIVE NON-TREATMENT

Selective non-treatment did not first arise with Baby Doe, nor did mixed emotions about neonates with disabilities. Until recently, both tribal groups and major civilizations actively encouraged infanticide in cases of neonatal disability. (86) In the West, the acceptance of infanticide in ancient Greece and Rome is well documented. Aristotle and Plato argued that the practice was not merely justifiable but imperative for infants with disabilities; they reasoned that such infants were a burden on their families and the state. (87) The Roman Twelve Tables echoed this view, exhorting that a "dreadfully deformed child shall be killed." (88) So did Roman philosophers like Seneca, who described infanticide on the basis of disability as an act of "reason that separates the harmful from the sound." (89) These societies, however, simultaneously cast doubt upon the practice; it remained hidden from public view and subject to moral censure. …

Log in to your account to read this article – and millions more.