Hauerwas and Disability Law: Exposing the Cracks in the Foundations of Disability Law
HAUERWAS AND DISABILITY LAW: EXPOSING THE CRACKS IN THE FOUNDATIONS OF DISABILITY LAW
ELIZABETH R. SCHILTZ
Copyright © 2012 by Elizabeth R. Schiltz.
This article is also available at http://lcp.law.duke.edu/.
* Professor of Law, Thomas J. Abood Research Scholar, and Co-Director, Terrence J. Murphy
Institute for Catholic Thought, Law, and Public Policy, University of St. Thomas School of Law
(Minneapolis). I was introduced to Stanley Hauerwas’s work on people with disabilities while writing
my master’s thesis in Catholic Studies at the University of St. Thomas. I am indebted to all my teachers
in that innovative interdisciplinary program, and particularly to my thesis adviser, Paul Wojda. My
appreciation for Samuel Bagenstos’s insights about the contradictions in the disability law grew over
the course of a series of discussions with student groups at Boston College Law School, Georgetown
Law Center, Yale Law School, and Columbia Law School. I thank the students who invited me and
shared their insights. I would also like to thank the participants of the 2011 Summer Seminar at the
MacLaurin Institute of the University of Minnesota and the participants of a University of St. Thomas
School of Law faculty colloquium. For the opportunity to bring Hauerwas and Bagenstos together in
this article, I am grateful to the editorial staff of Law and Contemporary Problems, and particularly the
brilliant and creative Special Editor of this volume, John Inazu, who has lived his commitment to
people with disabilities in many ways. And, of course, I must thank Peter, my son and my muse, for his
1. Stanley Hauerwas, Timeful Friends: Living with the Handicapped, in CRITICAL REFLECTIONS
ON STANLEY HAUERWAS’ THEOLOGY OF DISABILITY 11, 14 (John Swinton ed., 2004) [hereinafter
Hauerwas, Timeful Friends].
2. The focus of this article is people with intellectual, rather than physical, disabilities. The
appropriate terminology for this population can be problematic. This is graphically illustrated by the
different terms Hauerwas himself has used over the past thirty years of his writings on this topic—
including the quotes in this article—that track the evolving conventions of the subject. See Simi Linton,
Reassigning Meaning, in THE DISABILITY STUDIES READER 223, 223–28 (Lennard J. Davis ed., 2010)
(describing evolving usages). Although I typically use the “people first” terminology currently favored
by most disability advocates, see, e.g., Kathie Snow, People First Language, DISABILITY IS NATURAL
(May 2012), http://www.disabilityisnatural.com/images/PDF/pfl09.pdf—preferring, for example,
“people with intellectual disabilities” over “the mentally retarded”—this article sometimes refers
simply to “the disabled” in the interest of brevity. These references should be understood to refer
primarily to people with intellectual, rather than physical, disabilities.
3. Hauerwas, Timeful Friends, supra note 1, at 14.
widely heralded and enthusiastically embraced, as evidenced by the declining
numbers of children born with Down Syndrome worldwide, despite advancing
maternal ages that should be causing those numbers to increase.4 On the other
hand, laws expressing a strong commitment to the equal treatment of our fellow
citizens with disabilities continue to be enacted, typically with overwhelming
support, since the passage of the Individuals with Disabilities Education Act in
19755 (“IDEA”), which ensured the education of children with disabilities in
public schools. The Americans with Disabilities Act of 19906 (“ADA”)
prohibited discrimination against people with disabilities in public
accommodations and employment, and the Genetic Information
Nondiscrimination Act of 20087 prohibited employers or health insurers from
discriminating based on information from genetic tests.
There are, indeed, puzzling inconsistencies in contemporary society’s
attitudes toward the disabled—inconsistencies that Hauerwas identifies as
evidence of the flaws of modern humanism. Humanism’s emphasis on
rationality and capacity for reason is the most obvious target of any critique
focused on people with intellectual disabilities, whose capacity for reason is, by
definition, compromised to some degree. But Hauerwas focuses his critique on
two related corollaries—namely, that autonomy and the ability to freely create
one’s own identity constitute equally fundamental markers of humanity.
Disability law scholar Samuel Bagenstos identifies and attempts to explain a
series of contemporary contradictions in disability law, including those
stemming from recent case law restricting the scope of the ADA and the debate
about abortion after a prenatal diagnosis of a disability.8 A careful analysis of
these arguments reveals similarities between Bagenstos’s explanations for the
contradictions he observes and significant aspects of Hauerwas’s critique of
modern humanism. I will argue that Bagenstos’s arguments could be
strengthened by incorporating more completely Hauerwas’s full critique.
Appreciating the similarities between Bagenstos’s arguments and Hauerwas’s
insights does more than simply clarify and strengthen Bagenstos’s arguments. It
also evidences a growing and potentially powerful convergence of theological
and secular reflection on the thorny conundrum posed by contemporary
society’s treatment of the significantly disabled. By joining forces, proponents
of both religious and secular arguments might be able to work together for the
development of a less contradictory—and more inclusive—set of laws and
practices for people with disabilities.
4. See infra note 120 and accompanying text.
5. 20 U.S.C. §§ 1400–1482 (2006) (originally enacted as the Education for All Handicapped
Children Act of 1975).
6. 42 U.S.C. §§ 12101–12213 (2006).
7. Pub. L. No. 110-233, 122 Stat. 881 (codified in scattered sections of 26, 29 and 42 U.S.C.).
8. SAMUEL R. BAGENSTOS, LAW AND THE CONTRADICTIONS OF THE DISABILITY RIGHTS
HAUERWAS’S CRITIQUE OF MODERN HUMANISM:
THE PRETENSIONS EXPOSED BY PEOPLE WITH INTELLECTUAL DISABILITIES
Over the course of Hauerwas’s voluminous writings about people with
intellectual disabilities, he admits serious misgivings about instrumentalizing the
disabled by making them a part of his intellectual agenda.9 However, he is
unable to resist either working with or writing about such people, because by
being “drawn into the world of the mentally handicapped,” he eventually came
to realize that “[o]ur humanism entails we care for them once they are among
us, once we are stuck with them; but the same humanism cannot help but think
that, all things considered, it would be better if they did not exist.”10 The folksy
idiom of this quote belies the complexity of its insights. Why should being
“stuck with” people with intellectual disabilities give us a responsibility for care
that we could otherwise evade by preventing their existence? Why should this
intellectual epiphany—this recognition that the core idea underlying his
substantial body of theological writing about the disabled was, in fact, a critique
of modern humanism—only be possible for him after being “drawn into” the
“world of the mentally handicapped”?11
The complex layers of Hauerwas’s disability-based critique of modern
humanism reflect the different perspectives through which he encountered the
disabled, both personally and in his written work. Much of his earliest writing
on the topic addressed experiences of parents of intellectually disabled
children—a community he grew to know intimately while teaching at the
University of Notre Dame and volunteering at a neighboring center for disabled
children. Later writing reflected Hauerwas’s growing friendship with Jean
Vanier, the founder of L’Arche, an international federation of small, residential
faith-centered communities where people with and without intellectual
disabilities live together in friendship. His work based on these personal
encounters drew him into more theoretical engagements with philosophers of
modern humanism, such as Immanuel Kant, John Rawls, and Martha
Nussbaum, whose accounts of humanity Hauerwas criticizes for their failure to
account adequately for the disabled. Hauerwas invariably judges these
intellectual engagements to be futile, and he concludes that the witness
provided by those living with the disabled is the strongest argument for his
critique of modern humanism. In this part, a brief description of the modern
humanism that Hauerwas critiques will set the stage for a discussion of what
each of these three perspectives contributed to his critique.
9. Hauerwas, Timeful Friends, supra note 1, at 14.
LAW AND CONTEMPORARY PROBLEMS [Vol. 75:23
A. A Brief Description of “Our” Modern Humanism: Rationality and its Two
Humanism is generally characterized as a philosophy concentrating on
human values and human nature. It typically identifies the human capacity for
self-realization as the source of universal human dignity, rather than any
religious belief. John Swinton, the editor of the most comprehensive collection
of Hauerwas’s writings on disability, offers a helpful description of how
Hauerwas understands the target of his critique:
For Hauerwas, post-Enlightenment Western culture is liberal in its worldview,
assumptions, and expectations. Liberalism emphasizes the importance of reason,
rationality, independence, and the capacity for self-advocacy. The assumed norm for
authentic human living is that a person should be able to articulate their ideas
cognitively, logically, and rationally. From the perspective of liberalism, society is
assumed to be an association of free and independent equals. To be a “person” means
that one must be able to live one’s life, develop one’s potential and develop a
purposeful life-course without any necessary reference to others. Importantly, these
capacities are not only necessary for entry into the socio-political system, they are also
considered necessary for a person to live in a way which can be deemed authentically
human. . . . The experience of profound developmental disabilities sits uneasily with
the expectations, hopes, and dreams of liberal society.12
Swinton’s description captures the complexity of the various dimensions of
contemporary humanism that are particularly problematic for people with
cognitive disabilities. The most obvious is the emphasis on reason and
rationality. By definition, this norm assumes a capacity that is compromised to
some extent for people with intellectual disabilities. But Hauerwas does not
tend to focus on the capacity for reason in his critique of humanism.13 Instead,
he focuses on two corollaries flowing from this starting point, namely that
authentic personhood is characterized, first, by a person’s autonomy, and,
second, by a person’s capacity for self-definition. Though these two corollaries
are not entirely independent of each other, they are distinct. Each idea
illuminates different aspects of modern humanism that Hauerwas finds
particularly problematic for the disabled.
B. Corollary One: Autonomy is Fundamental to Personhood
The past few decades have witnessed no dearth of criticisms of the
presumption of autonomy as a fundamental attribute of humanity. Feminist
legal philosophers such as Robin L. West, Martha Alberson Fineman, and Joan
Williams have offered dependency-based theories of justice focusing on the
particular dependency of children on their parents that in turn results in
dependency for the care-giving parent.14 Others, such as the philosophers
12. John Swinton, Introduction: Hauerwas on Disability, in CRITICAL REFLECTIONS ON STANLEY
HAUERWAS’ THEOLOGY OF DISABILITY, supra note 1, at 1, 5.
13. But see Stanley Hauerwas, The Retarded and the Criteria for the Human, in CRITICAL
REFLECTIONS ON STANLEY HAUERWAS’ THEOLOGY OF DISABILITY, supra note 1, at 127 (criticizing
definitions of humanness applied in contemporary bioethical debates that focus exclusively on cognitive
14. MARTHA ALBERTSON FINEMAN, THE AUTONOMY MYTH: A THEORY OF DEPENDENCY
Alasdair MacIntyre, Hans S. Reinders, and Eva Feder Kittay, have focused on
the inherent dependency of the disabled in developing alternative moral or
political philosophies based on humanity’s mutual vulnerability and
Hauerwas joins this chorus, arguing that people with intellectual disabilities
present an uncomfortable challenge to the modernity-infused view of the self as
autonomous by painting the more honest picture of the person as vulnerable
As much as we fear suffering, we fear more the loneliness that accompanies it. We try
to deny our neediness as much, if not more so, to ourselves as to others. We seek to be
strong. We seek to be self-possessed. We seek to deny that we depend on others for
The retarded, therefore, are particularly troubling for us. Even if they do not suffer by
being retarded, they are certainly people in need. Even worse, they do not try to hide
their needs. They are not self-sufficient, they are not self-possessed, they are in need.
Even more, they do not evidence the proper shame for being so. They simply assume
that they are what they are and they need to provide no justification for being such. It
is almost as if they have been given a natural grace to be free from the regret most of
us feel for our neediness.16
In addition to the power of the witness provided by this “natural grace” of
people with disabilities, Hauerwas observes that those who care for people with
intellectual disabilities, particularly those in voluntary associations such as the
L’Arche communities, offer powerful prophetic witness to the possibility of a
world that is not structured around the autonomy fallacy. The L’Arche
communities are radical living arrangements for the disabled because they are
characterized by their commitment to communal life marked by genuine,
mutual friendship, rather than the more conventional commitment of fostering
the autonomy of the disabled while providing adequate care.17 Such a genuine
friendship depends on the mutual dependence of the friends, rather than a
onesided dependence of the disabled on the nondisabled. Vanier explains that
[o]ur focal point of fidelity at L’Arche is to live with handicapped people in the spirit
of the gospel and the Beatitudes. “To live with” is different from “to do for.” It
doesn’t simply mean eating at the same table and sleeping under the same roof. It
means that we create relationships of gratuity, truth and interdependence, that we
listen to the handicapped people; that we recognize and marvel at their gifts.18
Hauerwas considers this witness to lives structured around mutual
(2004); ROBIN L. WEST, CARING FOR JUSTICE (1997); JOAN WILLIAMS, UNBENDING GENDER: WHY
FAMILY AND WORK CONFLICT AND WHAT TO DO ABOUT IT (2000). For a more detailed discussion
of this work, see Elizabeth R. Schiltz, West, MacIntyre and Wojtyła: Pope John Paul II’s Contribution to
the Development of a Dependency-Based Theory of Justice, 45 J. CATH. L. STUD. 369 (2007).
15. EVA FEDER KITTAY, LOVE’S LABOR (1999); ALASDAIR C. MACINTYRE, DEPENDENT
RATIONAL ANIMALS: WHY HUMAN BEINGS NEED THE VIRTUES 3 (1999); HANS L. REINDERS, THE
FUTURE OF THE DISABLED IN LIBERAL SOCIETY (2000); HANS L. REINDERS, RECIEVING THE GIFT
OF FRIENDSHIP (2008).
16. Stanley Hauerwas, Suffering the Retarded: Should We Prevent Retardation?, in CRITICAL
REFLECTIONS ON STANLEY HAUERWAS’ THEOLOGY OF DISABILITY, supra note 1, at 87, 102.
17. MICHAEL DOWNY, A BLESSED WEAKNESS 40 (1986).
18. JEAN VANIER, COMMUNITY AND GROWTH 106 (1979).
LAW AND CONTEMPORARY PROBLEMS
dependency rather than autonomy to be so powerful as to be “dangerous”—
”too strong for most of us.”19 At the same time, though, he insists that “[t]heir
witness remains crucial for the rest of us [who] are not part of their community;
for without such examples imaginations lack the resources to know that what
we have become used to doing is not done by necessity.”20
C. Corollary Two: Capacity for Self-Definition is Fundamental to Personhood
Hauerwas captured modern humanism’s conviction that personhood is
fundamentally characterized by man’s capacity for self-definition in his writings:
“[W]e live in a time when people believe they have no story except the story
they chose when they thought they had no story.”21 He asks readers to test the
extent to which they accept this notion by reflecting on whether they think a
person should be responsible for any decision made when they did not know
what they were doing. Most readers do not. As Hauerwas explains, “[T]his
ethos of freedom is deep in our souls. We believe we should be held responsible
only for the things we freely chose when we knew what we were doing.”22 Our
own self-definitions—our own, freely created stories—set the parameters for
how we should be judged.
Hauerwas draws this vivid insight from his work with parents of children
with intellectual disabilities who are directly confronted with the fallacy that our
personhood is fundamentally the product of our self-definition in two ways—
one of which is direct and essentially existential, the other of which is slightly
more indirect and instrumental.
1. The Direct Existential Insight
Hauerwas argues that parents of children with intellectual disabilities are
confronted more directly than most people with the reality that we do not, in
fact, create and define ourselves from limitless blank slates of possibility, but
that we are, rather, creatures of God. In an essay about how parenting disabled
children teaches parents skills that ought to be used in raising all their children,
he argues that we have to understand all of our children as gifts, rather than as
the products of our choices.
For children are not beings created by our wills—we do not choose them—but rather
they are called into the world as beings separate and independent from us. They are
not ours for they, like each of us, have a Father who wills them as his own prior to our
choice of them.
Thus, children must be seen as a gift, for they are possible exactly because we do not
determine their right to exist or not to exist. Now it is important to notice that the
language of gift involves an extremely interesting grammar. For gifts come to us as a
given[;] they are not under our control. Moreover, they are not always what we want
or expect and thus they necessarily have an independence from us.
19. Hauerwas, Timeful Friends, supra note 1, at 23.
21. Stanley Hauerwas, The Politics of Gentleness, in STANLEY HAUERWAS & JEAN VANIER,
LIVING GENTLY IN A VIOLENT WORLD 77, 82 (2008) [hereinafter Hauerwas, Gentleness].
Insofar as gifts are independent they do not always bring joy and surprise, but they
equally may bring pain and suffering. But just such pain and suffering is the condition
fwoarntths,eairs tbheeinygwgoeunlduitnheengibftes,sufbojrecgtifttos othuartliamrietagteionnusi.n23e do not just supply needs or
The essential giftedness of human existence is more easily recognized in a
child with an intellectual disability than a non-disabled child. A non-disabled
child can more readily be seen as the product of a parent’s choice—she is a child
a parent would likely have chosen. The notion of human agency in the creation
of that child—whether the agency of the parent who chose the child or the
agency of the child in self-defining—is not disturbed. The disabled child,
however, is less likely to have been freely chosen by the parent. Moreover, we
would typically assume that the child himself would not have chosen a
disability. Thus, the very concept of agency—both the parent’s and the child’s—
is disturbed by the disability. The disability forces the parents to consider that
their children are gifted to them by another—in Hauerwas’s theology, by God.24
And once a parent acknowledges the essential giftedness of her child, she is
forced to acknowledge her own giftedness, and is thus confronted with the
fallacy of the belief that our personhood is fundamentally the product of our
Such a confrontation with the limits of self-definition is the subject of a
poignant exchange between Hauerwas and Michael Bérubé, the author of a
book about his experiences as the father of a son with Down Syndrome.
Hauerwas singles out Bérubé’s wistful description of his dreams for his son with
Down Syndrome, Jamie, as an example of the limits of modernity’s humanism.
Bérubé writes: “I have no sweeter dream than to imagine—aesthetically and
ethically and parentally—that Jamie will someday be his own advocate, his own
author, his own best representative.”25 Hauerwas commented in response as
How sad. All Bérubé can imagine for Jamie is that he be “his own author.” That
Bérubé can imagine no other future is not his fault. His imagination reflects the same
limits that formed the conceptions of justice he found so unsatisfactory. What other
possibility could there be in a world in which God does not exist?
. . . Bérubé has been gifted with Jamie, but he lacks the practices of a community that
would provide the resources for narrating his own and Jamie’s life.26
Bérubé responds to Hauerwas by arguing that Hauerwas has misunderstood
his use of the terms “his own advocate, his own author”: He was not
incorporating a robust capacity for self-definition into his dreams for Jamie, but
rather a more modest hope that Jamie would someday be able to make his own
contributions to advocating for himself.27 Bérubé’s response directly engages the
23. Stanley Hauerwas, Having and Learning to Care for Retarded Children, in CRITICAL
REFLECTIONS ON STANLEY HAUERWAS’ THEOLOGY OF DISABILITY, supra note 1, at 149, 155–56.
24. But see MICHAEL SANDEL, THE CASE AGAINST PERFECTION (2007) (making a secular
philosophical argument for giftedness as a fundamental attribute of personhood).
25. MICHAEL BÉRUBÉ, LIFE AS WE KNOW IT 264 (1996).
26. Hauerwas, Timeful Friends, supra note 1, at 16.
27. Michael Bérubé, Response: Making Yourself Useful, in CRITICAL REFLECTIONS ON STANLEY
LAW AND CONTEMPORARY PROBLEMS [Vol. 75:23
second way in which Hauerwas argues parents of children with disabilities are
confronted with the fallacy of self-definition as a fundamental marker of
humanity—the more indirect and instrumental way.
2. The Indirect Instrumental Insight
The more indirect and instrumental confrontation with the fallacy of
selfdefinition is not as exclusively accessible to parents, for it is an issue with which
many disability rights advocates, whether parents or not, struggle. However,
much of Hauerwas’s writing on this point is directed at parents who, as first and
primary advocates for their children, tend to struggle with this most intensely.
Contemporary resources for supporting parents of children with disabilities
often begin with an introduction to current “best practices” in disability
advocacy, in particular the “social construction model” of disability. The
decades of the 1970s and 1980s saw the emergence in the United States of the
“disabilities rights movement,” in which people with disabilities modeled their
struggles for freedom and equal treatment on the civil rights movements of the
1960s that saw the successful assertion of freedom and equality by racial
minorities and women.28 This movement saw significant successes on many
fronts, including the eradication of the presumption that people with disabilities
should be segregated into isolated institutions rather than living and working in
the community and the enactment of legislation such as the IDEA and the
Central to the ideology of the disability rights movement is the rejection of
the “medical model” of disability in favor of a “social construction model” of
disability. The medical model of disability assumes that a disability is a
“deficient or flawed human condition, a bodily deviation due to a ‘loss’ of
capacity in one way or another, which holds a person back from participation in
society. Hence, disability represents an inability, abnormality, or disadvantage
calling for management and correction in order to restore proper functioning.”29
Axiomatic to this model is that it is the nondisabled who must do this
management and correction, and that the management and correction is aimed
at making those with disabilities more like the nondisabled. The disability is
reduced to “a problem requiring diagnosis and treatment, a broken object to be
fixed, made better, or overcome.”30 In the process, though, “the person becomes
reduced to a function of disabilities rather than vice versa.”31 Disability rights
advocates argue that this model deprives the disabled of their own voice—that
is, the nondisabled determine what is best for the disabled based on their own
HAUERWAS’ THEOLOGY OF DISABILITY, supra note 1, at 31, 33.
28. See HANS J. REINDERS, RECEIVING THE GIFT OF FRIENDSHIP: PROFOUND DISABILITY,
THEOLOGICAL ANTHROPOLOGY, AND ETHICS 24 n.3 (2008) (citing foundational works on the
disability rights movement).
29. THOMAS E. REYNOLDS, VULNERABLE COMMUNION: A THEOLOGY OF DISABILITY AND
HOSPITALITY 25 (2008).
views of “the normal” and impose those views on the disabled. This complaint
is captured in the slogan: “Nothing About Us Without Us,”32 and it is given
concrete expression by the disability rights movement’s insistence on “people
first” language that emphasizes the person rather than the disability, such as “a
child with Down Syndrome” rather than “a Downs child.”33
The disability rights movement advocates an alternative model that views
the disability as a social construct. Under the social construction model, a
disability is more a function of the physical and social standards established by
society as normal than a function of some defect in the body of the individual
with the disability. It is society that disables a person who uses a wheelchair by
constructing buildings with stairs, rather than elevators or ramps—not the
paralysis of her legs. Under this model,
[g]enuine healing is more than a matter of an individual’s bodily adjustment to fit
society’s definition of normalcy. It is instead a matter of society adjusting to the
presence of diverse people with a range of impairments. And with this we enter the
arena of civil rights and social justice.34
Although the ideology of the disability rights movement described above
has, indeed, been a powerful force for significant improvements in the civil
rights and justice accorded people with disabilities, it is not immune from
criticism. For one thing, it ignores the reality of physical conditions responsible
for some physical and cognitive disabilities that are not the product of social
construction.35 More significant for Hauerwas’s critique of modern humanism,
though, is the argument that the social construction model of disability is based
on a concept of human nature in which self-representation and the freedom to
shape one’s own identity are the paramount values. As Dutch philosopher Hans
Underlying the [social construction model] is an anthropological claim about the
nature of our being. As human beings, we are free to construe the nature of our own
being in the act of self-identification. This freedom is shaped, and thus constrained, by
numerous cultural, political, and economic contingencies, but as ontological freedom it
is certain. Human beings are the kinds of beings who have their existence as a task,
not a preordained destination. This anthropological claim reinforces the appearance of
people with profound intellectual disability as problematic.36
Furthermore, this model “espouses an ethics of political activism” from which
the intellectually disabled are also excluded.37
[T]he suggestion that acts of will are essential in overcoming ‘disability’ is indebted to
a model of political rationality that presupposes a liberal notion of autonomy. . . . It
suggests that ‘emancipation from repression relies on the intellectual and emotional
resources of the individual.’ In this respect, it clearly does not represent people with
intellectual disabilities, let alone people with profound intellectual disabilities.38
32. JAMES I. CHARLTON, NOTHING ABOUT US WITHOUT US (1998).
33. See Snow, supra note 2.
34. REYNOLDS, supra note 29, at 29.
35. Id. at 26–27.
36. REINDERS, supra note 28, at 86.
37. Id. at 67.
38. Id. (quoting Tobin Siebers, Disability Studies and the Future of Identity Politics, in IDENTITY
LAW AND CONTEMPORARY PROBLEMS [Vol. 75:23
Parents of children with intellectual disabilities are thus often confronted
with the tension between the reality of a child whose capacity for articulating or
constructing even a rudimentary type of self-definition is diminished, and a
model of advocacy on behalf of that child that rejects that reality. As Tom
Reynolds, a theologian and the parent of a son with intellectual disabilities,
There is a two-sided charge that obligates parents of children with disabilities. . . .
First, there is a responsibility to affirm, nurture, and empower the unique person,
helping to foster his or her own peculiar way of being. Second, there is a responsibility
to encourage independence and capacity to live productively with others in society.
However, these two charges often run against one another.39
This quandary is troubling because it implicates a commonly accepted
articulation of modern humanism’s valorization of self-definition, namely
Immanuel Kant’s second formulation of the categorical imperative—never to
treat another human as a means only. Parents of intellectually disabled children
do, however, have to act on behalf of their children in many ways, without any
regard to the will of the child who cannot express herself. Does that mean they
are “using” their child as a means? Indeed, this is the quandary that Bérubé
explains he was thinking about when he expressed the hope that his son might
someday be his own “author.” Bérubé acknowledges that he is “caught in a
terrible paradox—affirming autonomy and dependency at once, and for
different reasons.” He explains,
It is . . . urgent . . . that persons with mental retardation be represented in the public
square when they cannot represent themselves; and it is all the more urgent that
persons with mental retardation who have long been presumed to be constitutively
unable to represent themselves be granted the material means to represent themselves
as best they can. If, as is likely, Jamie cannot be his own best representative, his own
‘author,’ in this secular sense, then he—like millions of persons with disabilities who
cannot communicate any adequate and accurate sense of themselves to other people—
will be all the more dependent on the intercession of others.40
Hauerwas suggests that this tension could be mitigated for Bérubé and
others like him by rejecting Kant’s second formulation out of hand, as a flawed
consequence of modern humanism’s obsession with self-definition.
Of course, we “use” the handicapped, but we are here to be of use to one another. The
notion that any use we make of one another can only be justified if it is done
voluntarily can now be seen as one of the peculiar sentimentalities of modernity that
results in self-supervision all the more tyrannical since what we do is allegedly what we
want to do. That the handicapped are subject to care for their own good—a good they
may not have chosen—is not an indication that such care is misguided, but rather
requires that the good that such care is serving be properly named. After all, they (like
us who are not retarded) exist to serve and to be served for our mutual upbringing. As
Christians we should not feel embarrassed to discover that the mentally handicapped
among us help us better understand the narrative that constitutes the very purpose of
POLITICS RECONSIDERED 10, 15 (Linda Martin Alcoff et al., eds., 2006)).
39. REYNOLDS, supra note 29, at 75.
40. BÉRUBÉ, supra note 27, at 33.
41. Hauerwas, Timeful Friends, supra note 1, at 20.
As a non-Christian, Bérubé resists the existential insight about the
giftedness of each human being on which Hauerwas depends,42 but he does
accept the instrumental insight in the end by accepting Hauerwas’s critique of
Kant’s second formulation of the categorical imperative. Bérubé acknowledged
that, after first resisting Hauerwas’s critique, his experience with Jamie has
caused him to realize that “Professor Hauerwas is right: In the course of our
lives we cannot not make use of others, and how awful would it be, in ethical
theory or in family gatherings, if we did not set out making ourselves useful to
others.”43 The admission that “we cannot not make use of others” is an
acknowledgement that no one can absolutely and entirely be the author of her
D. The Futility of Theoretical Engagements with the Concepts of Modern
In a 2008 book co-authored with Jean Vanier, Hauerwas expanded on his
earlier observations about the power of the L’Arche communities’ witness to a
world structured around modernity’s deficient humanism, showing that
alternative structures are possible.44 Hauerwas attributes the extraordinary
strength of that witness to its subversive gentleness.45 While acknowledging the
irony of presenting a characteristically “aggressive and confrontational” piece
of writing to support gentleness, he contends, “My only defense is that God has
given us different tasks. My task has been to put Vanier’s wisdom into
conversations with philosophical and political positions that I fear are
antithetical—if not outright threats—to the people we call ‘intellectually
disabled.’”46 He admits that he will not be practicing what Vanier preaches:
I do not want to learn to be gentle. I want to be a warrior on behalf of L’Arche, doing
battle against the politics that threaten to destroy these gentle communities. Jean, of
course, is no less a warrior. But where I see an enemy to be defeated, he sees a wound
that needs to be healed.47
With these words he puts the reader on notice that what follows will be
something qualitatively different from the narrative approach in his previous
writing on disability: a more abstract engagement with the theoretical basis for
modern humanism. Tellingly, though, Hauerwas concludes that such abstract
engagements will not accomplish anything. The more powerful impetus for
changing the practices of modernity is the prophetic witness of those whose
practices reflect a different understanding of humanity—in families or in
communities such as L’Arche.
Hauerwas takes off the gloves in this battle by naming the enemy directly—
John Rawls and his intellectual heir, Martha Nussbaum. He argues that
42. BÉRUBÉ, supra note 27, at 33–34.
44. See Hauerwas, Gentleness, supra note 21.
46. Id. at 78–79.
47. Id. at 80.
LAW AND CONTEMPORARY PROBLEMS [Vol. 75:23
Nussbaum’s attempt to more adequately account for the interests of the
disabled among others in the “capabilities approach” set forth in her book
Frontiers of Justice is doomed by her unwillingness to abandon the essential
presumptions of the social contract theory. Hauerwas singles out two
presumptions of social contract theory as being particularly problematic for
Nussbaum’s attempt to account for the disabled. First is its faith in what
Nussbaum calls “strong rationalism” aimed at avoiding appeals to intuitions and
prejudices. Hauerwas characterizes this as liberal political theory’s “attempt to
avoid contingency [by providing] an argument that is true without appealing to
our experience in contingent historical conditions.”48 Second is its conviction
that the presumption that people will act in accordance with their own
selfinterest is a more realistic and secure basis for a just society than a presumption
that people will act altruistically.
Somewhat ironically, Nussbaum launches her critique with three intimate,
personal stories of particular parents raising children with disabilities: Sesha, a
young woman with cerebral palsy and severe mental retardation, the daughter
of the philosopher Eva Kittay and her husband Jeffrey; Arthur, Nussbaum’s
own nephew with Asperger’s syndrome and Tourette’s syndrome; and Bérubé’s
son Jamie.49 Nussbaum acknowledges that people with significant disabilities
have been excluded from Rawlsian accounts of justice, because they are not the
“human beings possessed of no serious mental or physical impairments” who
are the parties in the Original Position designing the just society.50 She argues,
however, that this omission could be remedied if those “by whom” the just
society is structured keep in mind all of those “for whom” the society is
structured.51 She writes,
One might have strong reasons for seeking such a theory and separating the two
questions, if one starts from the idea that many different types of lives have dignity
and are worthy of respect. If one thinks that way, one would acknowledge from the
start that the capacity to make a contract, and the possession of those abilities that
make for mutual advantage in the resulting society, are not necessary conditions for
being a citizen who has dignity and deserves to be treated with respect on a basis of
equality with others.52
Nussbaum’s “capabilities” approach is an attempt to expand the Rawlsian
understanding of “what is dignified and worthy in the human being,” and thus
in the self-interest of those in the Original Position to maximize for all members
of society.53 Whereas Rawls considered human rationality to be the basis of
dignity, and measures of productivity—like income and wealth—as the sole
legitimate indices of well-being, Nussbaum argues for a broader focus.
Nussbaum’s capabilities approach rests on an understanding of human dignity
48. Id. at 85.
49. MARTHA NUSSBAUM, FRONTIERS OF JUSTICE, 96–98 (2006).
50. Id. at 16–17.
51. Id. at 17.
53. Id. at 160.
that includes not just rationality, but also sociability and “bodily need, including
the need for care.”54 This broader account of dignity suggests to Nussbaum that
a more appropriate measure of the social well-being to be maximized would be
an expansive list of various essential capabilities that incorporate people’s
different needs and abilities.55 Nussbaum believes that if those in the Original
Position understand their essential dignity to be enhanced by maximizing a
combination of all of these capabilities, the interests of those with significant
disabilities will be protected, because those interests will be included in the
selfinterested calculations of those in the Original Position.
Hauerwas contends that Nussbaum’s theory fails for two reasons. First, it
fails logically because of her commitment to avoiding contingencies:
The very notion of capabilities depends on close analysis of practices that allow us to
correlate the needs of a particular person with what will satisfy those needs. But that
kind of concreteness is not available as long as Nussbaum is determined to maintain
Rawls’s liberal framework. It’s the same problem all over again: when we try to
imagine politics without the contingencies of human life, people with disabilities get in
Hauerwas’s second argument is a critique of the social contract theory’s
presumption that self-interest can assure a just society. He argues that
Nussbaum has not—and indeed cannot—demonstrate that it is really in the
selfinterests of the non-disabled to care for the disabled. If “justice” is defined as
what society can achieve if it acts in enlightened self-interest, “justice” will
never adequately provide for the disabled. A theoretical argument based on
why it should be in one’s self-interest to care for the disabled will not convince
anyone. Only the experience of such care will convince anyone of its value, and
no one will rationally undertake such an obligation out of self-interest. Some
other motivation than self-interest—such as altruism, the happenstance of
giving birth to an intellectually disabled child, or Jean Vanier’s direction by his
spiritual mentor to start living with two intellectually disabled men—must
provide the impetus for the experience that teaches the value of the care of the
disabled. In the end, Hauerwas agrees with Reinders that
[t]here is no point in arguing with a skeptical spectator that he or she should care
about the disabled. Instead, . . . it is crucial for a liberal society that people exist who
are willing to engage in the practice of caring for the disabled. . . . [N]o public policy or
theory can resolve the problem of what appears to be the burden of the lives of the
disabled unless “it can tap [cultural] resources that motivate citizens to value the
commitment that it requires.” After all, significance found in sharing one’s life with
another person—a significance that will usually come as a surprise—cannot be found
outside the activity itself.57
This same skepticism about the efficacy of abstract argument on this point is
displayed in Hauerwas’s exchange with Bérubé. Hauerwas takes a passing swipe
54. Id. at 159–60.
55. Id. at 164–68.
56. Hauerwas, Gentleness, supra note 21, at 87.
57. Id. at 89 (quoting HANS REINDERS, THE FUTURE OF THE DISABLED IN LIBERAL SOCIETY
at engaging some of Bérubé’s attempts to defend aspects of modern humanism,
but he concludes that these attempts are irreconcilable with Bérubé’s
commitment to his son Jamie’s care. The only thing that justifies that
commitment is the fact that Bérubé, by virtue of his fatherhood, had the
experience of caring for Jamie.
Bérubé’s criticism of Rawls and Habermas rings hollow in the light of his own
narrative. He either cannot or does not choose to make intelligible his admirable
commitment to Jamie. For example, with great candor Bérubé tells us that he and his
wife are as pro-choice after the birth of Jamie as they were prior to his birth. Indeed,
he notes that they intentionally did not use amniocentesis, assuming they would “just
love the baby all the more” if the baby was born with Down Syndrome. He confesses
such a stance was “blithe and uninformed” and that if they had known that their
child’s life “would be suffering and misery for all concerned” they might have chosen
to have an abortion. . . . Bérubé notes, however, that it is extremely difficult to discuss
Jamie in this way. Just as it was hard to talk about him as a medicalized being when he
was in the ICU, it is still harder to “talk about him in terms of our philosophical beliefs
about abortion and prenatal testing. That’s partly because these issues are so famously
divisive and emotionally charged, but it’s also because we can no longer frame any
such questions about our child now that he’s here.”
“Now that he is here” is the nub of the matter. Bérubé does not pretend to be able to
do much more than represent Jamie “now that he is here.”58
And, indeed, Bérubé concedes this point in his response to Hauerwas. As
noted above, though he cannot accept the theological basis of Hauerwas’s
critique of modern humanism, he finds the critique convincing. Without the
theological basis, though, he cannot explain why it is convincing. He just knows,
from his experience with Jamie, that is it correct. He writes:
As non-Christians, . . . we therefore find a place in Hauerwas’s model, a place where
we, too, can be of use . . . precisely to the extent that we do not feel compelled to
justify the existence of the mentally handicapped. . . . I will try to eschew justification
altogether, . . . quoting something Jamie said to me last month as he fell asleep on my
arm while we were riding a train to New York. “Daddy,” he said, groggily and with
reference to nothing at all, “always be my friend.” As I assured him, with all my heart,
that I would always be his friend, I couldn’t help wondering, now, where in the world
did that come from? Thanks to Hauerwas and Vanier, I now know I need not bother
asking. The question, like the fact of our obligations to each other, does not “come
from” anywhere. It is simply here, now that Jamie is here, and the only thing that
matters is that Christians and non-Christians alike respond to it with all the caritas
they can invent or imagine.59
In summary, Hauerwas answers the questions posed by his puzzling
language in the opening quote about how people with intellectual disabilities
provided “the crack [he] needed to give concreteness to [his] critique of
modernity” in the following way. What are the false pretensions underlying
modern humanism? That man is essentially rational, autonomous, and
selfdefining. Why does being “stuck with” the disabled create obligations toward
them, even for modern humanists and why was it necessary for Hauerwas to
58. Hauerwas, Timeful Friends, supra note 1, at 15 (quoting MICHAEL BÉRUBÉ, LIFE AS WE
KNOW IT: A FATHER, A FAMILY, AND AN EXCEPTIONAL CHILD (1996), at 47, 48).
59. BÉRUBÉ, supra note 27, at 35–36.
No. 4 2012]
HAUERWAS AND DISABILITY LAW
have been “drawn into”60 the world of the disabled for him to recognize how
they expose the pretensions of modern humanism? Because the grip that
modern humanism has on our collective minds and imaginations is so strong
that only the immediate, direct, emotional experience or witness of a
relationship with a human who does not conform to the false ideal of modern
humanism is sufficient to release us from that grip.
Although Bérubé’s attempt to express a rationale for his commitment to his
son that is consistent with his intellectual commitment to liberal humanism fails,
he does not deny the strength of the commitment to his son. Nussbaum’s
attempt to reconcile her intellectual commitment to a Rawlsian social contract
theory of justice with the commitments that friends of hers displayed to their
children with disabilities61 is similarly futile. However, it is telling that her
personal encounters with people with disabilities and those who care for them
suggested to her that there is some deficiency in the Rawlsian account worth
struggling with intellectually. Both Bérubé and Nussbaum present examples of
modern humanists whose practices—demonstrating a strong commitment to
caring for people with intellectual disabilities—cannot be explained by their
intellectual commitments to modern humanism’s presumptions of rationality,
autonomy, and self-definition, no matter how hard they struggle to do so.
UNCOVERING HAUERWAS’S INSIGHTS IN CONTEMPORARY DISABILITY LAW SCHOLARSHIP
Law and the Contradictions of the Disability Rights Movement,62 by Samuel
R. Bagenstos, one of the most prominent disability law scholars, represents
another attempt to grapple intellectually with reconciling modern humanism’s
presumptions with a commitment toward people with disabilities. In his
introduction, Bagenstos explains that his interest in disability law was initially
motivated by professional ambition: as a young lawyer in the Department of
Justice’s Civil Rights Division, early cases brought under the ADA gave him
the chance to argue and make new law.63 When he transitioned to the legal
academy, he found himself intellectually intrigued by the juxtaposition of the
politically conservative rhetoric of the disability right’s movement’s focus on
self-reliance and independence, and the politically liberal civil rights tradition
on which the movement based its demands for equality. Then, when his first
article on disability rights was in the editorial process, his son was born with a
physical disability, and he “began to see disability rights from yet a new
60. Hauerwas, Timeful Friends, supra note 1, at 14. Hauerwas uses this same language in a similar,
more recent non-apology for “using” the L’Arche community for an intellectual critique, even though
he is not willing to commit to living their lives, saying, “But I am going to make the most from being
drawn into the world of L’Arche and try as best I can to say why L’Arche has so much to teach us.”
Hauerwas, Gentleness, supra note 21, at 78.
61. NUSSBAUM, supra note 49, at 96–103.
62. BAGENSTOS, supra note 8.
63. Id. at ix.
perspective. The stigma, stereotypes, and failure to take account of disability
came home to me in an especially pointed way.”64 This combination of
perspectives, he explains, has caused him to focus on the tensions and
contradictions within the disability rights movement and how those tensions
play themselves out in our legal system.
A. Bagenstos’s Tensions and Their Relation to Hauerwas’s Insights
Bagenstos argues that many aspects of contemporary disability law
commonly criticized by scholars and advocates in fact simply reflect different
strands of thought in the disability rights movement, revealing unresolved
tensions within the movement itself. Like all social movements, the disability
rights movement embraces a wide spectrum of people with different concerns,
life experiences, and ideological perspectives. Bagenstos’s account of its history,
with the gradual development of alliances between a variety of organizations,
local and national social movements, activists with disabilities, and activists
caring for the disabled, stresses this wide spectrum of interests. He asserts,
however, that all of these groups did eventually reach one point of consensus:
the rejection of the medical model of disability in favor of the social
This rhetorically powerful consensus, though, masks what Bagenstos
identifies as three continuing, but often unacknowledged, tensions in the
movement. The first is the tension between the universal and the minority
group model of disability.66 Under the social construct model, all people are
recognized as being arrayed on a spectrum of ability; only social norms “divide
the level of ability we call ‘normal’ from the level we call ‘disability.’”67 Some in
the disability rights movement in effect accept that this dividing line has been
drawn by society, creating a distinct minority group of people with disabilities,
and argue that the proper policy response to this is to direct resources and
accommodations at that group, following an affirmative action model. Others
argue that the proper response is to reject the dividing line drawn by society,
and focus instead on policies that recognize that everyone on the spectrum is at
risk for manifesting some aspect of any disability, such as “the universal design
of the built environment to embrace the largest variety of potential users, as
well as a general rule of flexibility to recognize that all people are different.”68
The second is the tension inherent in reliance on nondisabled professionals
working with the disabled as doctors, psychiatrists, therapists, social workers,
teachers, and advocates.69 Bagenstos points out that
the critique of professionalism stood in tension with the actual practices of disability
64. Id. at x.
65. Id. at 18–20; see also supra notes 29–33 and accompanying text.
66. BAGENSTOS, supra note 8, at 20–21.
67. Id. at 20.
68. Id. at 21.
69. Id. at 21–22.
No. 4 2012]
HAUERWAS AND DISABILITY LAW
rights movement activists, who often relied on the assistance and endorsement of
professionals who shared their views. The movement relied on lawyers, often ones
who had no disabilities themselves, to bring disability rights cases; it relied on the
assistance of psychologists who opposed institutionalization and forced medication; it
relied on the nondisabled parents of disabled children, especially in efforts to secure
educational rights; and it relied on special-education teachers.70
The third tension that Bagenstos identifies is the tension underlying the
movement’s embrace of independence, rather than welfare, as its predominant
goal.71 The disability rights movement was generally uncomfortable with
disability welfare programs. Some disability activists dismissed them as attempts
to “buy off” activism that might result in more fundamental changes to
structures of discrimination. Others were uncomfortable with the culture of
dependence that welfare programs risk creating in the disability community.
Others criticized the stigmatization and paternalism inherent in programs
excusing the disabled from ordinary responsibilities of citizenship. In addition
to these ideological arguments, Bagenstos identifies some pragmatic motives for
framing the goals of the disability rights movement as aimed at achieving
independence, rather than expanding entitlements. It provided an alternative to
the civil rights frame that was facing increasing political resistance in the 1980s.
Furthermore, it resonated with the Reagan Administration’s focus on fiscal
conservatism and opposition to welfare programs. It also helped unite the
members of the disability community itself, historically fragmented into interest
groups representing specific types of disabilities. However, despite the
rhetorical utility of independence in getting favorable laws enacted, the fact
remains that these laws are not devoid of elements of charity and welfare.
Bagenstos notes the persistence of this inherent tension: “Movement adherents
claim to seek ‘independence,’ ‘self-reliance,’ and ‘self-help.’ But to obtain the
‘independence’ they seek, they rely significantly on assistance from third
parties,” including some of the support traditionally associated with welfare or
entitlement programs—such as physical assistance with personal care,
transportation, or other practical facets of daily life.72
Bagenstos frames all three tensions as fitting comfortably under the
umbrella of the social construct theory of disabilities. His uncritical embrace of
that theory as a point of agreement for all disability activists, however, ignores
the difficulties that this theory poses for people with profound intellectual
disabilities.73 Moreover, if one considers these tensions through the lens of
70. Id. at 22.
71. Id. at 22–32.
72. Id. at 32.
73. See supra notes 35–39 and accompanying text. Bagenstos tends to focus on the physically
disabled in his analysis. His discussions of paternalism do not address the hardest cases, involving
intellectual impairments that significantly compromise a person’s capacity for any meaningful exercise
of agency. Even with respect to physical disabilities, one scholar has criticized Bagenstos’s “complete
rejection of the medical model of disability,” noting that “when someone cannot get out of bed to go to
the bathroom without assistance, it is not inaccessible social structures that cause that limitation; it is
the paralysis or weakness of the legs.” Nicole B. Porter, Relieving (Most of) the Tension, 20 CORN. J.L.
& PUB. POL’Y 761, 768 (2011).
LAW AND CONTEMPORARY PROBLEMS [Vol. 75:23
Hauerwas’s critique of modern humanism, it begins to look as though
Bagenstos shares many of Hauerwas’s concerns, even though his allegiance to
the social construct theory prevents him from characterizing his critiques in this
way. The inherent tensions that Bagenstos identifies in the embrace of
“independence” as the frame for disability rights are arguably criticisms of the
social construct theory’s elevation of self-representation and the freedom to
shape one’s own identity at the expense of other aspects of human need. Both
this tension, and the tension concerning the role of professionals, are aspects of
the instrumental quandary that so troubled Bérubé and that Hauerwas suggests
could be addressed by releasing the hold of Kant’s second formulation of the
categorical imperative. Finally, the tension between the universal and the
minority group model of disability could be placed within the debate between
theories of justice based on autonomy and those based on dependency. The
disability rights advocates arguing for the minority group model arguably accept
the autonomous non-disabled as embodying the “norm” that the dependent
disabled need accommodations to achieve. Those asserting the universal model
arguably advocate a new “norm” based on our common dependency.
After identifying these underlying tensions, Bagenstos then analyzes how
they are displayed in a number of areas of contemporary disability law. Two of
the areas on which he focuses are, first, ADA jurisprudence and, second,
beginning and end of life issues. A close look at his argument in both areas
supports the suggestion that Bagenstos is, in fact, articulating a critique that is
deeply compatible with that of Hauerwas, and that his argument could be
strengthened by recognizing and embracing this critique more fully.
B. ADA Jurisprudence
Bagenstos’s book has been widely heralded as an innovative contribution to
the analysis of ADA jurisprudence.74 The more conventional explanations for
the low success rates of ADA plaintiffs in the federal courts—particularly in the
Supreme Court—had focused on a social backlash against, and judicial betrayal
of, the principles of the disability rights movement embodied in the law.75
Bagenstos, in contrast, argues that the often-criticized restrictive readings of
what constitutes a “disability” under the ADA can actually be justified by the
tenets of the disability rights movement, and that the discomfort some might
have in seeing those tenets instantiated in the developing case law manifests the
internal tensions in disability rights theory.
The ADA defines “disability” as one of three conditions affecting an
(A) a physical or mental impairment that substantially limits one or more major life
activities of such individual;
(B) a record of such an impairment; or
(C) being regarded as having such an impairment . . .76
In a series of cases interpreting this provision of the ADA, the Supreme
Court has consistently narrowed the meaning of the disability definition. In
Sutton v. United Airlines, Inc.,77 Murphy v. United Parcel Service,78 and
Albertson’s, Inc. v. Kirkingburg,79 the Court rejected plaintiffs’ arguments that
they were entitled to the protection of the ADA in the face of denial of
employment opportunities because of disabilities. In each case, the disability at
issue could be mitigated by medication—in the case of hypertension—or by
other means, such as eyeglasses or adaptation of the brain for cases involving
vision impairments. Even though the disability at issue was the reason for each
employer’s denial of employment opportunities, the Court held that the
plaintiffs were not entitled to invoke the ADA because they did not fall within
the first prong of the ADA’s disability definition—being substantially limited in
a major life activity.80 In Sutton and Murphy, the Court also rejected arguments
that the plaintiffs fell within the third prong of the ADA’s disability
definition—being “regarded as” having such an impairment.81 The Court held
that this definition required the employers to have regarded the plaintiffs as
being unfit for work generally—rather than simply unfit for this particular kind
of work.82 In Toyota Motor Manufacturing v. Williams, the Court ruled that the
plaintiff’s carpal tunnel syndrome did not prevent her from “doing activities
that are of central importance to most people’s daily lives” even though it
rendered her unable to perform the tasks central to her particular job.83
Although Bagenstos does not endorse these decisions, he rejects the
common argument that they represent a “betrayal” of the aims of the ADA.84
Rather, he argues that they can be understood as being entirely consistent with
different strands of the disability rights agenda. They are arguably in line with
the independence framework that some in the disability rights community
embraced in place of the welfare framework. Bagenstos argues that
[i]f the ADA is understood . . . as a means of saving society money by moving people
off disability benefits rolls and into the workforce . . . [then] the statute should focus
on protecting those people who would be unable to work—and thus dependent on
public assistance—without antidiscrimination and accommodation protection.85
76. 42 U.S.C. § 12102(1) (2006).
77. 527 U.S. 471 (1999).
78. 527 U.S. 516 (1999).
79. 527 U.S. 555 (1999).
80. Sutton, 527 U.S. at 488–89; Murphy, 527 U.S. at 521; Kirkingburg, 527 U.S. at 566.
81. Sutton, 527 U.S. at 490; Murphy, 527 U.S. at 522.
82. Sutton, 527 U.S. at 493–94 (plaintiffs were airline pilots whose less than 20/20 vision caused
their employer to consider them unfit to fly airplanes but not to perform other jobs); Murphy, 527 U.S.
at 524–25 (plaintiff was considered to be unfit to drive a commercial motor vehicle but not to work as a
83. 534 U.S. 184, 198 (2002).
84. BAGENSTOS, supra note 8, at 38.
85. Id. at 39.
LAW AND CONTEMPORARY PROBLEMS [Vol. 75:23
People trained as pilots or mechanics would presumably not be relegated to the
welfare rolls if they were forced to choose alternative jobs.
Moreover, Bagenstos argues that these decisions are also consistent with the
minority group model, even though they might be inconsistent with the
universal model. The plaintiffs in these cases had conditions that likely did not
put them into the ambit of the “discrete, stigmatized minority group” that
advocates of the minority group model suggest require the accommodations of
disability law.86 As support for his interpretation of the Supreme Court’s
position, Bagenstos points to Bragdon v. Abbot,87 in which the Supreme Court
accepted the argument of another plaintiff that her condition—asymptomatic
HIV, a highly stigmatizing condition—did fall within the ADA’s disability
But even if these decisions might be consistent with some strands of the
disability rights movement, Bagenstos argues that they do not serve the
disability rights movement as a whole. He criticizes both the independence
framework and the minority group model as being inadequate to rectify the
currently unsatisfactory situation of how we treat people with disabilities more
generally, a state of affairs he calls “disability inequality.”89 With respect to the
independence framework, he argues,
If the goal of disability rights law is to promote equal opportunity to participate in the
economic and civic life of the community, the law must strike at those limitations,
even if they do not compromise individual ‘independence.’ Mere ‘independence,’
without equality, is not what disability rights activists really seek, and a statute
constrained by a focus on independence is unduly limited.”90
The minority group model is similarly too narrow to protect all those who
need the protection of the ADA, since the problem of disability inequality is
not limited to “society’s identifying a discrete class of people with disabilities
and discriminating against them. . . . [It] also consists in the neglect of people
who differ, physically or mentally, from the norms taken as a given by those
who design institutions, and by those institutions’ inflexibility in responding to
difference.”91 Moreover, the minority group model adherents’ attempt to
identify the discrete circle of people rests on a false view that there is one single
disability identity. In fact, however, “[d]isability identity is too multifarious,
society’s responses to conditions identified as disabilities too diverse, for the
notion of a societally created disability category to offer much traction.”92
With these sorts of arguments, Bagenstos appears to be struggling to express
a critique of the ADA that illustrates what Hauerwas might recognize as the
inevitable frustrations of a person whose life experience and commitments
No. 4 2012]
HAUERWAS AND DISABILITY LAW
confront him with the inadequacies of modern humanism. Bagenstos
acknowledges that addressing “disability equality” demands attention to more
than a person’s autonomy and capacity for self-definition. He recognizes the
limits of the minority group model of disability, and its acceptance of an
autonomy-based understanding of humanness, rather than a dependency-based
model. Indeed, he even seems to echo Hauerwas’s critique of Nussbaum’s
capabilities approach, arguing that the particular contingencies of disabled
people’s lives render a theory based on the denial of contingencies ultimately
unsatisfactory. But Bagenstos’s stubborn adherence to the social construct
theory as the “unifying concept” for disability rights theory reveals the limits of
his critique of modern humanism.
In 2008, Congress reacted to the Supreme Court’s narrow reading of the
definition of disabilities in cases such as Sutton, Murphy, and Williams by
enacting the ADA Amendments Act, explicitly rejecting the restrictive
interpretations of the Supreme Court without substantively changing the
definitions themselves.93 Bagenstos is skeptical that these amendments will
address the problems identified above. He writes, “I doubt that a mere change
in language would overcome the powerful momentum of the minority-group
model and the independence frame.”94 However, he is equally pessimistic about
the possibility of enacting a statutory definition that might reflect a more
allencompassing “universal” approach to disability rights that acknowledges the
aspects of human need that might not lead to economic independence.95 In the
end, Bagenstos argues that disability rights activists should accept the limits of
the ADA’s approach and concentrate their activism on expanding the coverage
of public health insurance, which he sees as “the most significant barrier to
employment and community integration for people with disabilities.”96 Though
he does not express it in these terms, this would seem to be an appropriate
reaction to his confronting the limits of the modern humanism underlying the
ADA. The social welfare system accepts vulnerability and need as a legitimate
basis for social support. Without the need to fight the rhetorical battles of
independence, disability rights advocates could perhaps tap common moral
intuitions, rather than arguments justified by fictional constructs such as
enlightened self-interest. Bagenstos writes bluntly, “the effort to avoid an
association with ‘charity’ or ‘welfare’ at all costs is an effort that makes no
sense.”97 He cautions, though, that this does not mean that disability advocates
should reject the indisputable value of the lessons learned in the earlier stages
of the disability rights movement, and that “[s]ocial welfare interventions must
be tailored to promote employment, integration, and community participation,
93. Pub. L. No. 110-325, § 2, 122 Stat. 3553, 3553 (2009) (codified at 42 U.S.C. § 12101 (Supp. III
94. BAGENSTOS, supra note 8, at 51.
95. Id. at 53.
96. Id. at 138.
97. Id. at 136.
LAW AND CONTEMPORARY PROBLEMS [Vol. 75:23
and to avoid unnecessary paternalism and dependence.”98
But with the insights provided by Hauerwas, Bagenstos’s critique could be
expanded and generalized. The ADA—even after recent amendments—
instantiates an inadequate notion of the human person, a notion that leaves out
those with significant cognitive disabilities who will never be moved off the
disability rolls and into the work force. Loosening the constrictive grip of
modern humanism might expand the scope of the values that disability rights
activists fight to protect to include the interests of those with significant
cognitive disabilities. If the powerful voices of disability advocates—such as
Hauerwas, writing from a theological perspective, and Bagenstos, writing from
a secular, legal perspective—are converging on the same sort of critique,
perhaps there is common ground for working together to address the more
fundamental issues at stake in resolving the contradictions between our
practices and our expressed commitments to the value of the lives of people
C. The Contradictions of Life, Death, and Choice
Another context in which Bagenstos notes significant internal
inconsistencies of the disability rights movement is the debates about beginning
and end of life issues. Bagenstos notes that disability rights groups that
generally support a woman’s right to abortion have joined forces with pro-life
groups on three issues, making the same kind of argument in each instance:
withholding treatment, food, or water for infants born with disabilities;
right-todie cases; and selective abortions after a prenatal diagnosis of a disability. The
basic argument in all three cases begins by embracing the principle of “choice.”
However, societal stigmas and other social pressures, often presented by
professionals without disabilities, effectively coerce people into making
decisions that reflect biases against people with disabilities. Given that reality,
regulation of the particular form of killing at issue is arguably not restrictive of
free choice, but instead is necessary to preserve true freedom of choice.
In the early 1980s, disability rights groups joined right-to-life groups as amici
curiae in support of the Reagan Administration’s ultimately futile attempt to
prohibit the practice of withholding medical treatment or food and water from
infants born with disabilities.99 Their briefs included two arguments. The first
was that “the decision to withhold treatment from an infant with a disability is
often based on an erroneous, if not prejudiced, understanding of the ‘quality of
99. Id. at 99 (citing Brief for the Am. Coal. Of Citizens with Disabilities et al. as Amici Curiae
Supporting Petitioner, Heckler v. Am. Hosp. Ass’n, 476 U.S. 610 (1986) (No. 84-1529), 1985 WL
669107; Brief for the Am. Ass’n on Mental Deficiency et al. as Amici Curiae Supporting Petitioner,
Heckler, 476 U.S. 610 (No. 84-1529), 1985 WL 669104; Brief for the Ass’n for Retarded Citizens et al. as
Amici Curiae Supporting Petitoner, Heckler, 476 U.S. 610 (No. 34-1529), 1985 WL 669102); Brief for
the Disability Rights Ed. & Defense Fund, Inc. Women’s Legal Defense Fund as Amici Curiae
Supporting Petitioner, Heckler, 476 U.S. 610 (No. 84-1529), 1985 WL 669109).
No. 4 2012]
HAUERWAS AND DISABILITY LAW 45
life’ experienced by individuals with disabilities.”100 The second was that “it was
the physicians’ biases, and not the unconstrained exercise of parental choice,
that led to the withholding of treatment from newborns with disabilities.”101
They argued that the parents making these choices were in states of extreme
mental and emotional vulnerability, and that the decisions typically had to be
made quickly. In such a situation, parents tend to rely on the specialized
knowledge and experience of their physicians. And, unfortunately, physicians
tend to misinform them about the nature of the disability and the prospects for
the child’s development and future, and often obfuscate their explanations with
confusing medical terminology to disguise the non-medical grounds for their
recommendations—that is, their own biases against the quality of life of people
with disabilities.102 Given the lack of authentic agency by parents in such
situations, this decision should not be respected.
The right-to-die cases include the highly publicized cases in the 1980s and
1990s in which Dr. Jack Kevorkian assisted with suicides, and the Terry Schiavo
case, involving the removal of feeding and hydration tubes from a young
woman in a persistent vegetative state.103 Many of Dr. Kevorkian’s assisted
suicides involved people with disabilities, prompting a group of disability rights
activists to form an advocacy group called Not Dead Yet, which opposes
assisted suicide and euthanasia as “a deadly double standard for people with
severe disabilities, including both conditions that are labeled terminal and those
that are not.”104 The disability activists of Not Dead Yet made the same two
basic arguments in briefs filed in most of these right-to-die cases.105 The first was
that the practice of assisted suicide reflects a discriminatory belief that life with
a disability is not worth living. They argue that, if a person without a disability
decides to commit suicide, society considers that an irrational choice that should
not be respected, and society intervenes to prevent the free exercise of that
choice. However, if a person with a disability makes the same choice, it is seen
as entirely rational and something that should be supported.106 This reflects a
fundamental bias about the quality of life with a disability, based on “inaccurate
understandings about the quality of life enjoyed by people with disabilities or
erroneous predictions about the future course of an individual’s medical
condition.”107 Second, the social stigma associated with disability as well as other
significant pressures—such as advice by physicians sharing these fundamental
LAW AND CONTEMPORARY PROBLEMS
biases, financial issues, or the desire not to be a burden to loved ones—together
compromise the authentic “freedom” of the “choice” of a person with
disabilities to end her own life. Given that there is no possibility for truly free
choices in this situation, these disability rights activists argue that the practice
should be banned, a position upheld as constitutionally permissible by the
In recent years, the astronomical increase in the number of genetic
conditions that can be identified through prenatal testing has been the subject
of increasing concern to a number of disability rights activists. Although some
of these tests have a therapeutic purpose—to identify conditions that can be
treated in utero—the vast majority of them are used to identify disabilities for
the purpose of abortion. In response, some disability rights advocates have
begun to develop a critique of the practice of prenatal testing for the purpose of
selective abortion similar to the critiques of withdrawing treatment and assisted
suicide.109 They argue that decisions to abort based on prenatal testing are
generally misinformed, and often effectively coerced. Recent studies tend to
show that “many members of the health professions view childhood disability as
predominantly negative for children and their families, in contrast to what
research on the life satisfaction of people with disabilities and their families has
actually shown.”110 There have been many studies demonstrating that genetic
counseling offered to parents after prenatal diagnosis tends to be influenced by
these same sorts of negative prejudices and misinformation about the prospects
of people with disabilities.111 The parents faced with the decision of whether to
abort a child after a prenatal diagnosis are in states of extreme mental and
emotional vulnerability, are typically pressured to make the decision to have an
abortion quickly, and are thus extremely susceptible to the unfairly biased
pressure of the “professionals” surrounding them.
Bagenstos points out, though, that in contrast to the withholding treatment
and assisted suicide debates, disability rights activists tend not to argue that the
appropriate form of intervention in this choice is a restriction of the legal right
to abortion. Rather, they typically argue that parents undergoing prenatal
No. 4 2012]
HAUERWAS AND DISABILITY LAW
testing ought to be presented with fuller and more accurate information about
disabilities and the positive aspects of parenting children with disabilities, while
endorsing a decision to abort in light of this fuller information. Bagenstos
identifies this as another significant internal inconsistency in the disability rights
movement. In the first two contexts, the disability rights movement argues that
powerful social biases effectively constrain the freedom to make a choice of life
or death. Thus, a complete prohibition of such a choice—that is, the choice not
to treat the disabled infant or the choice to assist in a suicide—actually best
serves autonomy.112 In the abortion context, however, the disability rights
movement backs away from this conclusion. Bagenstos argues that the Supreme
Court’s recent abortion jurisprudence would probably support this type of an
[I]t is apparent that the [Court’s] rationale for upholding the informed consent
requirement had exactly the same structure as the disability rights critique discussed
above. . . . Both the disability rights critics and the [Court] . . . point . . . to social
pressures and the lack of information as significant obstacles to free choice. Although
governmental regulation may in some ways restrict choice, it does so in an effort to
remove even greater obstacles to free choice.”113
Despite this, however, Bagenstos notes that disability rights groups have not
joined pro-life groups in arguing for a restriction of a woman’s right to elect
abortion after a prenatal diagnosis of a disability.
Bagenstos concludes his analysis of this contradiction with a rather weak
argument for consistency on the part of the disability rights community. He
describes one group of disability rights activists that has avoided the
inconsistency noted above by supporting the right to assisted suicide, stating
that the group “probably constitutes a minority of disability rights activists but a
majority of people with disability.”114 Though this group concedes that the
decision process should be regulated to some extent to ensure unbiased
decisionmaking, they argue that the right to make the choice of assisted suicide
ought to be preserved. Bagenstos argues that this position is “appealing,
because it seems to avoid the internal inconsistencies of the disability rights
In an earlier law review article on which this chapter in his book is based,
however, Bagenstos delves a bit deeper into the implications of this internal
inconsistency, revealing something more about the premises underlying the
inconsistency. He searches for some way to both “endorse the disability rights
LAW AND CONTEMPORARY PROBLEMS [Vol. 75:23
critique while at the same time adhering to support for broad abortion rights.”116
He argues that “gender equality” could serve as a brake on the “kinds of
(publicly or privately imposed) constraints that we are going to treat as
rendering a choice unfree.”117 One could accept the theory that “many abortions
that result from prenatal testing are effectively coerced by social stigmas filtered
through powerful professional cultures,” but also believe that
any prohibition of a particular class of abortion will be abused to harass women who
seek abortions more generally. Such a prohibition might also chill doctors from
performing abortions, particularly if its terms are vague. If those risks outweigh the
risk that disability-selective abortions will occur and harm disability equality—or if
nonregulatory means such as public education can effectively address the harms
tchaeuscerditibqyues.u11c8h abortions—then abortion should not be regulated, even if one accepts
Examining the premises underlying this argument reveals how
fundamentally it is undergirded by the assumptions of modern humanism. The
starting premise is that the right to an abortion is essential to women’s equality,
since any restriction of this right necessarily compromises a woman’s autonomy
and capacity to define herself.119 The fact that Bagenstos provides no argument
in support of his starting premise is symptomatic of the hold that modern
humanism has on the terms of the abortion debate in our country. This premise
is asserted as the only argument he gives for his conclusion. The argument is
that one could weigh the risk that some people with disabilities will be aborted
because of social stigma against the risk that some women and doctors might be
dissuaded from obtaining or providing abortions, and determine that the latter
risk is greater than the former. And, because women’s equality must depend on
unhindered access to abortions, one must therefore conclude that gender
equality trumps disabled people’s right to exist.
The contradiction that Bagenstos thus exposes in this area of disability
rights jurisprudence makes an extremely powerful statement about the current
social consensus that supports Hauerwas’s observation that “[o]ur humanism
entails we care for [the disabled] once they are among us, once we are stuck
with them; but the same humanism cannot help but think that, all things
considered, it would be better if they did not exist.” The ADA’s abstract
commitment to the equal worth of every person, regardless of ability or
disability, has limits. It guarantees people with disabilities—at least within the
ADA’s narrow definition—access to workplaces, schools, public spaces, and
transportation. But that access does not extend to our homes or to our families.
116. BAGENSTOS, supra note 109, at 457.
117. Id. at 451–52.
118. Id. This earlier article by Bagenstos provides a sensitive and nuanced effort to grapple fairly
with many of the difficulties raised by asserting gender equality as the justification for permitting
disability-selective abortions, including the argument that gender equality could be asserted as an
argument for restricting sex-selective abortions. Id. at 455. Bagestenos’s book, however, seems to
embrace the gender equality argument described above.
119. For a comprehensive critique of this assumption, see Erika Bachiochi, Embodied Equality:
Debunking Equal Protection Arguments for Abortion Rights, 34 HARV. J.L. & PUB. POL’Y 889 (2011).
No. 4 2012]
HAUERWAS AND DISABILITY LAW 49
When modern humanism’s commitment to the autonomy of women is weighed
against its commitment to the continued existence of the disabled, the
autonomy of women trumps.
Bagenstos’s discussion of the inherent contradictions of the disability rights
movement in the beginning and end of life context is subject to the same
Hauerwasian critique as his analysis of the ADA jurisprudence on the
definition of a disability. Again, Bagenstos seems unable to recognize that the
“contradictions” he exposes are in fact related to the inadequacies of modern
humanism. He identifies the inconsistency in the disability rights movement’s
position in the right-to-die cases and the right-to-life cases, but, without any
reasoned argument, asserts that this inconsistency should be resolved by
favoring “autonomy”—of either the disabled person contemplating suicide or
the woman whose freedom to create her own identity might be cramped by an
unwanted pregnancy—over the life of the person with a disability. Indeed, his
adherence to the contestable premises of modern humanism as absolutely
determinative in the abortion context seems to blind him to the need to provide
any argument for his positions, and prevents him from considering how the
insights he has drawn from his experiences with people with disabilities might
raise questions about his proposal for resolving this inconsistency.
This sort of a position is perhaps the most disheartening example of the
dangers of the practices of modernity resulting from the false pretensions of
modern humanism. The evidence is irrefutable that prenatal testing for
disabilities is resulting in a decreased number of children with those disabilities
being born.120 This can be seen most clearly by examining the declining
120. Barron H. Lerner, When Diseases Disappear—The Case of Familial Dysautonomia, 361 N.
ENG. J. MED. 1622 (2009) (noting precipitous decline in incidence of familial dysautonomia, a severe
neurologic condition); Babak Khoshnood et al., A Population-Based Evaluation of the Impact of
Antenatal Screening for Down’s Syndrome in France, 1981–2000, 111 BJOG 485 (2004) (noting “a
major impact on live birth prevalence of Down’s syndrome as a result of the increases in prenatal
detection”); Allyson J. Peller et al., Trends in Congenital Malformations, 1974–1999: Effect of Prenatal
Diagnosis and Elective Termination, 104 OBSTETRICS & GYNECOLOGY 957 (2004) (noting correlations
between increases in rates of prenatal screening for various conditions and elective terminations of
pregnancies); F. M. Lai et al., Birth Prevalence of Down Syndrome in Singapore from 1993 to 1998, 43
SINGAPORE MED. J. 70 (2002), available at http://www.sma.org.sg/smj/4302/4302a3.pdf (noting
increased numbers of live births of children with Down Syndrome “due to antenatal diagnosis and
selective termination”); Lynn Gillam, Prenatal Diagnosis and Discrimination Against the Disabled, 25 J.
MED. ETHICS 163, 164 (1999), available at http://jme.bmj.com/content/25/2/163.full.pdf (summarizing
“the very clear evidence that in response to moderate to severe fetal abnormality, the vast majority of
women choose to terminate their pregnancy” to support “the claim that prenatal diagnosis will cause a
reduction in the number of people living with disabilities”); C. Mansfield, S. Hopfer & T. M. Marteau,
Termination Rates After Prenatal Diagnosis of Down Syndrome, Spina Bifida, Anencephaly, and Turner
and Klinefelter Syndromes: A Systematic Literature Review, 19 PRENATAL DIAGNOSIS 808 (1999)
(meta-analysis of twenty international studies suggesting correlation between prenatal diagnosis of
various conditions and pregnancy terminations). But see Jaime L. Natoli & Deborah L. Ackerman,
Prenatal Diagnosis of Down Syndrome: A Systematic Review of Termination Rates (1995–2011), 32
PRENATAL DIAGNOSIS 142 (2012) (arguing that termination rates after prenatal diagnosis for Down
Syndrome in the United States have decreased in recent years); G. de Graaf et al., Changes in
Yearly Birth Prevalence Rates of Children With Down Syndrome in the Period 1986–2007, 55 J.
INTELL. DISABILITY RES. 462 (2011) (noting that, despite increased prenatal testing in the
LAW AND CONTEMPORARY PROBLEMS [Vol. 75:23
worldwide population of the “poster child” for prenatal testing for conditions
that cannot be treated prenatally—Down Syndrome. This condition is simple to
identify prenatally, and there are no therapeutic treatments for the condition
once it is identified. The only way to prevent the birth of a child with Down
Syndrome is to abort it. A 1999 meta-analysis of data from studies worldwide
concluded that about 92% of women who receive a definitive diagnosis of
Down Syndrome choose to abort their children.121 The absolute number of
babies born with Down Syndrome in the world is decreasing as testing becomes
more widespread, even though women are tending to have children at older
ages and the risk of having a child with Down Syndrome increases as women
age.122 This dramatic reduction in the total number of people with Down
Syndrome clearly expresses to those living with Down Syndrome that society is
not unified in its belief that they are just as valuable, and valued, as people
without Down Syndrome. And if Hauerwas is correct, dwindling numbers of
people with cognitive disabilities in the world will render their crucial witness to
the inadequacy of the presumptions of modern humanism ever fainter.
It is not realistic to think that focusing on the convergences of Hauerwas’s
and Bagenstos’s critiques will resolve the contentious issue of the morality of
abortion after a prenatal diagnosis of a disability. But perhaps an appreciation
for the common ground between the general critiques of each of these disability
rights advocates could give both sides a clearer understanding of the
presumptions underlying the arguments being made. Underlying Hauerwas’s
position is a radical critique of autonomy and self-determination as crucial to
human flourishing. That critique is shared by many feminists and philosophers,
and to a great extent by Bagenstos himself. However, Bagenstos does not apply
that critique to his commitment to a woman’s right to abortion. Some disability
rights activists, such as Adrienne Asch, while expressing a commitment to
“reproductive choice for all women,” have articulated arguments that selective
abortions after prenatal diagnosis are morally problematic in a way that other
abortions are not, because of the attitudes they express.123 Asch argues that
“[w]hat differentiates abortion after prenatal diagnosis (and abortions for sex
selection) from all other abortions is that the abortion is a response to
characteristics of the fetus and would-be child and not to the situation of the
woman.” Selective abortion, she argues, “expresses negative or discriminatory
attitudes not merely about a disabling trait, but about those who carry it.”124
Netherlands, “Down syndrome live birth prevalence has risen in the last two decades as a result of
rising maternal age”).
121. Brian G. Skotko, With New Prenatal Testing, Will Babies with Down Syndrome Slowly
Disappear?, 94 ARCHIVES DISEASE CHILDHOOD 823 (2009).
122. Trends in the United States are consistent with this global trend. Studies conducted in 2004
and 2005 in the United States show a 15% decrease between 1989 and 2005 in the number of babies
born with Down Syndrome, even though an analysis of maternal age trends indicates there should have
been a 34% increase. Id.
123. Adrienne Asch, Reproductive Technology and Disability, in REPRODUCTIVE LAWS FOR THE
1990S 70 (Sherrill Cohen & Nadine Taub eds., 1989); Saxton, supra note 110, at 158–62.
124. Asch, supra note 123, at 70. This argument might be termed an “expressivist” argument against
No. 4 2012]
HAUERWAS AND DISABILITY LAW 51
While Bagenstos cites Asch extensively in his article, he does not directly
engage her argument. The major collections of writings on the morality of
prenatal testing similarly and quite consciously make clear that a woman’s right
to abortion is off limits for engagement.125 Perhaps appreciating the common
ground that many on opposing sides of the abortion debate share in their
critiques of the presumptions of autonomy and self-determination might open
the door for a more careful consideration of the emerging expressivist
arguments against abortion after a prenatal diagnosis of a disability.
Bagenstos and Hauerwas represent two equally eloquent and powerful
advocates for people with significant disabilities. Both have expended
considerable intellectual energy confronting and trying to explain
inconsistencies in our practices—including the practices embodied in the laws
we enact—and our commitments to the disabled. Their personal commitments
to this vulnerable population have led both to many of the same conclusions
about the inadequacies of modern humanism’s presumptions that rationality,
autonomy, and self-determination are the paramount values to be protected in
our laws and our practices. Hauerwas reaches these conclusions as a theologian,
from a conviction that the existence of God best explains these contradictions.
Bagenstos reaches these conclusions as a legal scholar, from a conviction that a
clearer understanding of the values served by the political forces shaping our
laws best explains these contradictions. That these two scholars who have
radically different starting points reach many of the same conclusions should
both comfort and validate those sharing either of these divergent starting
With respect to the areas of disagreement, a focus on the common
commitments of each side at least helps clarify the unacknowledged premises in
the arguments, which might enable more conversation, and perhaps more
cooperation, despite remaining disagreements. In his essay, Intractable Moral
Disagreements, Alasdair MacIntyre asks “what rationality requires of us in
situations in which we confront others who are in radical moral disagreement
with us.”126 Sometimes, even free, open, unthreatening, and noncoercive
deliberations will not result in agreement on certain intractable moral issues—
such as the morality of abortion after a prenatal diagnosis of a disability.127
MacIntyre asks, “When we have reached this point, how should we proceed
further? The urgent practical question will have become that of how we may
selective abortion, as Asch criticizes what the discriminatory attitudes that the act expresses.
125. See QUALITY OF LIFE AND HUMAN DIFFERENCE: GENETIC TESTING, HEALTH CARE, AND
DISABILITY 13 (David Wasserman et al. eds., 2005); Parens & Asch, supra note 110, at 12.
126. Alasdair MacIntyre, Intractable Moral Disagreements, in INTRACTABLE DISPUTES ABOUT
THE NATURAL LAW: ALASDAIR MACINTYRE AND CRITICS 1, 3 (Lawrence E. Cunningham ed., 2009).
127. Id. at 18–24.
most effectively find common ground with at least some of those with whom we
are in continuing and irremediable disagreement.”128 MacIntyre concludes that,
in such situations, the most effective way to defend what he considers to be the
precepts of natural law
is not an attempt to demonstrate the falsity of the conclusions of [our interlocutors] . . . .
What is needed instead is attention to the premises from which they argue and an
attempt to undermine belief in those premises by demonstrating the flaws and
confusions that inform those premises . . . . The best defense of natural law will consist
in radical philosophical, moral, and cultural critiques of rival standpoints.129
This sort of debating posture, however, will necessarily look very different
from failed rational deliberation that preceded it. Quoting John Henry
Newman, MacIntyre warns,
“Controversy, at least in this age,” said Newman, “does not lie between the hosts of
heaven, Michael and his Angels on the one side, and the powers of evil on the other;
but it is a sort of night battle, where each fights for himself, and friend and foe stand
together.” What Newman said of his age remains true of ours.130
Although Hauerwas, Bagenstos, and those who share their commitments
and presumptions, might be foes in some particular aspects of this debate,
perhaps they might “stand together” in the fight for a more satisfactory
combination of practices and laws affecting people with significant cognitive
disabilities, drawing on, in Bérubé’s words, “all the caritas they can invent or
74. See id. at 772; Robert W. Pratt , Whither the Disability Rights Movement , 109 MICH. L. REV. 1103 , 1105 - 06 ( 2011 ) (book review); Michael A . Stein et al., Cause Lawyering for People with Disabilities , 123 HARV. L. REV. 1658 , 1659 - 60 ( 2010 ) (book review).
75. BAGENSTOS, supra note 8, at 1-2.
100. Id .
101. Id .
102. Id . at 100.
103. Schiavo ex rel . Schindler v. Schiavo , 403 F.3d 1223 ( 11th Cir . 2005 ).
104. About Not Dead Yet, NOT DEAD YET, http://notdeadyetnewscommentary.blogspot. com (last visited Apr. 4 , 2012 ).
105. See BAGENSTOS , supra note 8 , at 100 ( citing Brief of Amici Curiae Not Dead Yet et al . In Support of Appellant and Requesting Reversal , Bush v. Schiavo, 885 So. 2d 321 (Fla . 2004 ) (No . SC04 - 925), 2004 WL 1713757).
106. Id . at 101.
107. Id .
108. See Washington v. Glucksberg , 521 U.S. 702 , 735 ( 1997 ) (upholding Washington's ban on physician-assisted suicide); Vacco v . Quill , 521 U.S. 793 , 808 - 09 ( 1997 ) (upholding New York's ban on physician-assisted suicide).
109. See Samuel R. Bagenstos , Disability, Life, Death, and Choice, 29 HARV. J.L. & GENDER 452 , 435 ( 2006 ) (citing NAT'L COUNCIL ON DISABILITY , ASSISTED SUICIDE: A DISABILITY PERSPECTIVE 22-28 ( 1997 )); Carol J. Gill , Health Professionals, Disabilities, and Assisted Suicide: An Examination of Relevant Empirical Evidence and Reply to Batavia, 6 PSYCHOL . PUB. POL' Y & L. 526 ( 2000 ).
110. BAGENSTOS, supra note 8, at 104 ( citing Erik Parens & Adrienne Asch, Disability Rights Critique of Prenatal Genetic Testing: Reflections and Recommendations , in PRENATAL TESTING AND DISABILITY RIGHTS 3 , 20 ( Erik Parens & Adrienne Asch eds., 2000 )) ; see also Marsha Saxton, Opposition to Prenatal Diagnosis and Selective Abortion, in PRENATAL TESTING AND DISABILITY RIGHTS, supra , at 147 , 155 .
111. See DEFIANT BIRTH ( Melinda Tankard Riest ed ., 2006 ); Brian G. Skotko, Prenatally Diagnosed Down Syndrome: Mothers Who Continued their Pregnancies Evaluate their Health Care Providers, 192 AM. J. OBSTETRICS & GYNECOLOGY 670 ( 2005 ); Parens & Asch, supra note 110, at 6-7.
112. BAGENSTOS, supra note 8, at 110.
113. Id . at 109.
114. Id . at 112. Bagenstos cites the amicus curiae brief submitted to the Supreme Court in Glucksberg and Quill by the Gay Men's Health Crisis and Lambda Legal Defense and Education Fund and “Five Prominent Americans with Disabilities” who are affiliated with the group Autonomy, Inc., an organization of people with disabilities who oppose the position of Not Dead Yet . Brief for the Amici Curiae , Washington v. Glucksberg , 521 U.S. 702 ( 1997 ) (No. 96 - 110 ), 1996 WL 711205 ( 1996 ). This Brief includes results of a 1995 Gallup poll finding that 66% of people with disabilities support the right to assisted suicide . Id. at *4 .
115. Id .