Of feminism and disability theory's many overlapping concerns, few have received as much attention as prenatal genetic diagnosis and selective abortion. While the attention to how genetic selection reinforces disability stigma is important, much of this writing has failed to present the feminist case for the right to unrestricted abortion. This oversight has led to an articulation of the disability critique of selective abortion that threatens the very claims to reproductive freedom and bodily self-determination that undergird disability politics as well. This article rearticulates the feminist case for unrestricted reproductive rights in order to challenge the current framing of prenatal genetic diagnosis as an ethical failure and to present the opportunity to refigure reproductive rights as disability rights.
In March of 2013, North Dakota became the first U.S. state to enact a ban on performing an abortion on a woman who sought the procedure solely based on a positive test for genetic abnormality. North Dakota's bill was crafted from draft legislation entitled "Prenatal Discrimination Act" and created by the anti-abortion group American's United for Life. With the enactment of this law, a debate about genetic selective abortion, which had been taking place amongst feminist disability scholars and bioethicists for decades, moved into the legislative sphere, raising the stakes for questions concerning the possibility of being pro-choice and anti-selective abortion. As Adrienne Asch and Erik Parens cite, "virtually all the major work in the disability critique of prenatal testing emerges from those who are also committed to a pro-choice, feminist agenda" (2000, 12). Regardless of their stated commitment to feminist pro-choice politics as a policy matter, a serious question must be raised concerning the compatibility of a particular ethical objection to genetic selection with a feminist politics of abortion, 1 especially when the ethics of anti-selective abortion can so easily be used to legally curtail women's access to abortion.
While it is rare for feminist scholars who write about reproductive politics to address genetic testing and genetic selection, those who do often reaffirm biased assumptions about the supposed tragedy of giving birth to a child with disabilities (see Piepmeier 2013 for a review). In the popular press, the woman seeking an abortion after her fetus tested positive for a genetic abnormality has become the basis for a narrative meant to rally support against 20-week abortion bans. As one Slate piece misleadingly answers the question of why women wait until after 20th week to secure an abortion, "comprehensive fetal testing…[is] typically performed just before 20 weeks of gestation. Such scans are critical for uncovering major birth defects…in many cases of severe birth defects, no medical treatment can salvage a fetus's life or result in any measure of normal future health" (Sangahvi 2013). But research demonstrates that most women seeking late-term abortions do not do so because of fetal genetic tests but due to late discovery of pregnancy and logistical barriers to procuring an abortion (Foster and Kimport 2013). Despite this fact, the narrative of fetal genetic abnormalities reinforces narratives about the tragic circumstances of women whose wanted pregnancies can now be understood as legitimately unwanted and thus serve as a sound ethical basis for abortion.
It is in this context of false and dangerous narratives of disability that moral objections to genetic selection continue to be articulated. According to these critiques, such an understanding of disability is based on discriminatory attitudes that deny the possibility of the value of a life with disability. Furthermore, any decision made on the basis of such immoral discrimination is, itself, immoral (Kaposy 2013). Given the anti-disability context, the claim that disability objections to genetic selection can still be pro-choice seems, on its face, unproblematic. Women ought to have access to abortion, but those who make decisions to abort on the basis of morally problematic assumptions about disabled people are acting in a morally problematic way. 2
This article contests the notion that moral objections to women's use of genetic testing and selective abortion can easily fit within a feminist politics dedicated to protecting women's legal access to abortion. I will argue that such moral objections fail to account for the contextual nature of women's reproductive decisions and thus risk paternalistic judgments that undermine the feminist premises of the importance of reproductive freedom. If it is indeed the case that feminist abortion politics preclude a moral objection to the use of genetic testing and selective abortion, then the question remains, what sort of ethics of abortion is politically desirable for feminist disability scholars? In providing a reconstructed feminist case for abortion, I will argue that a feminist ethics of abortion can also make a productive contribution to both feminist reproductive politics and anti-discrimination disability politics. By keeping questions of politics and sociology at the fore, this article contributes a vital approach to an ethical debate where abstraction from lived reality may result in political consequences, such as the North Dakota ban on genetic selection, that are undesirable based on the stated desires of both feminists and disability scholars.
In contesting the moral objection to genetic selection, I will focus on the work of Adrienne Asch and David Wasserman. Adrienne Asch has developed some of the most nuanced ethical critiques of genetic selection and provides the most comprehensive objection to genetic selection. The core of Asch's argument, that the use of genetic selective abortion is based on misinformation about living with disabilities and that it expresses a negative valuation of people with disabilities, remains at the heart of many ethical objections to genetic selection (see for instance Hubbard 1997, Saxton 2006, and Hall 2013). I will focus here on the later work of Adrienne Asch, written with coauthor David Wasserman, as it incorporates responses to many earlier criticisms of her objection to genetic testing and most clearly articulates the moral basis for the objection to genetic selection: that the ethics of the family ought to be an ethics of unconditional welcome, which precludes any selectivity or discrimination. After articulating what is problematic about Asch and Wasserman's approach from a feminist perspective, I will forward a reconstructed feminist case for abortion that would reject the moral objection directed at women deciding to selectively abort. This reconstruction includes a different moral system of valuation, that of Rosalind Petchesky's morality of praxis, and an articulation of bodily integrity as a core political principle for both reproductive and disability politics, providing the possibility for a different focus for feminist disability activism.
A Moral Case against Genetic Selective Abortion
Numerous scholars maintain a dedication to reproductive rights while articulating a moral objection to genetic selective abortion. Selecting against impairment is, for them, a symptom of widespread stigma that constructs disability as irredeemably tragic and/or unfathomably burdensome. While there is no inherent contradiction between reproductive rights and a disability critique of medicalized stigma, when couched as a moral objection to selective abortion, little room remains to consider why one ought to act to politically protect women's access to abortion in the context of genetic selection.
In this section, I first consider the argument that selective abortion is morally problematic because it is based on stigmatizing misinformation about the meaning of a life lived with a disability. While it is undeniably true that people with disabilities are stigmatized and that such stigma may very well play a role in some decisions to selectively abort, focusing solely on the role of stigma creates too strong of an objection, such that women as reproductive subjects are overdetermined and denied any real decision making authority. Second, I turn my attention to the ideal of parenting as one of unconditional welcome as a justification for viewing selective abortion as morally problematic. This ideal is articulated without any reference to the role of family in gender oppression, and as is often the case when ideal theory does not include an analysis of the many facets of injustice, is in danger of winning a small victory for one group, people with disabilities, through the subjugation of another, women.
Misinformation and Synecdoche
Critics of selective abortion argue that beliefs about the hardships of raising a child with disabilities stem from erroneous cultural stereotypes and misinformed medical professionals. The assumption of many people is that those with disabilities cannot live a full or happy life and that those who must care for people with disabilities are overly burdened by their charges. Disability advocates use sociological data to dispute both these characterizations. People with disabilities often report the same quality of life as those without disabilities, and parents with children living with cystic fibrosis do not report any feelings of guilt or inadequacy as parents (Asch 1999, Silvers 1998). Because doctors rarely receive any training on the reality of living with disability, their speculations are based on the discriminatory beliefs that pervade society. As Anita Silvers writes, "sighted people notoriously overestimate the disruptiveness of being blind because they can only speculate about it" (1998, 53). On these grounds, therefore, the anti-selective abortion authors argue that the choice of selective abortion is morally suspect.
Recently, Adrienne Asch and David Wasserman have articulated this objection in a new fashion. They have argued that the morally suspect aspect of selective abortion is that of syndecdochal thinking (Asch and Wasserman, 2005, 2007a, 2007b, 2010):
The questionable assumption concerns the quality of life enjoyed by a child with Down syndrome or CF, and by the parents of such a child, The error lies in the belief "that this one piece of information suffices to predict whether the experience of raising that child will meet parental expectations"…Reliance on this generalization is morally problematic, even if it is explained and mitigated by social and institutional pressures (Asch and Wasserman, 2005, 174-175).
This problem of illegitimately letting the part stand in for the whole is supported by their arguments that raising a child with a disability is neither so burdensome or unrewarding as parents who engage in selection or genetic testing suspect. While it is theoretically possible that synecdoche, letting the part stand in for the whole, is only one morally suspect basis for selective abortion amongst a host of other moral or amoral justifications, Asch and Wasserman argue this is not the case. The other types of parental reasoning—projectivist (seeing a child as a project) or perfectionist (creating a future prodigy or messiah)—that would justify selective abortion are equally morally suspect due to the misunderstanding of the ideal of the family. Asch and Wasserman argue for the familial ideal as one of unconditional acceptance, an argument I will deal with below. The authors do not consider that there could be a circumstance that raising a child with a disability could possibly be more difficult, to the point that a woman making the decision to abort is not under the sway of faulty synecdochal reasoning but has a reasonable appraisal of her life such that raising a child with a disability would deny her the ability to operate as anything but a caretaker or to live a life free from poverty. Three broad examples support this sociological criticism of Asch and Wasserman.
First, while it may be the case that many women could cope with the additional time, stress, and money necessary to raise a child with a disability, to universalize from this perspective without empirical support ensures that we ignore the lived reality of women for whom such additional costs and burdens could be unbearable. One study found that families with children with disabilities who were living below the poverty line were more likely to experience material deprivation, such as food insecurity, housing instability, lack of health care access, and telephone disconnection than families under the poverty line with children without disabilities (Parish et al. 2008). A separate survey, which compared parents with children with Down syndrome and parents with children with no disabilities actually supports a claim that many women who experience the raising a child with Down syndrome do not experience synecdochal or stigmatizing attitudes towards their children, but still experience greater depression and hardships: "The diagnosis of Down syndrome did not contribute to mothers' perceived parental stress, although children's higher caregiving demands were significantly linked to mothers' perceptions of difficulties in parental competence and depression" (Roach et al. 1999, 432). The same study found that 76% of surveyed mothers who did not have a child with Down syndrome were employed, compared to 56% of those who did. Thus, if the problem is one of faulty moral thinking, such sociological facts complicate the moral objection to genetic selection.
Second, evidence suggests that many women choose to abort even with a fuller understanding of what life with a disabled child is like. Parens and Asch (2000) laud one practice that introduces women whose fetuses test positive for Down syndrome to other parents who have infants, children and young adults with Down syndrome. "Only" 62% of this cohort decided to abort (as opposed to the documented 90% rate without such counseling). While the twenty-eight percent reduction is not trivial, we should wonder why the 62% still decided to terminate their pregnancies. Seeing families with mentally impaired children may not have displaced the pregnant women's stereotypes of the hardships of caring for a child with disabilities. Even if the stereotypes were challenged, the requirements of caring for a child with Down syndrome could still be understood as too burdensome for any particular caregiver. Should Asch and Parens morally condemn the 62% who received an accurate portrait of living with a child with disabilities and still decided to terminate? If so, then the disability critique of genetic selection shuts down any productive engagement with feminist theories of embodied difference and bodily self-determination, because it denies the ability for women to interpret the world based on their experiences and needs.
Finally, Rayna Rapp's classic study of women who received amniocentesis presents the reasons women give for receiving genetic testing and considering selective abortion. She found that almost all the women she interviewed had known someone with a disability, most often Down syndrome; "Many commented that the retarded [sic] children with whom they were acquainted had reasonable lives; the price was paid, in their estimation, by other family members" (Rapp 1999, 132). These women articulated two concerns: that when their caretakers died, cognitively impaired children will lose the care they depend on to survive and that such care places inordinate burdens on female family members. Rapp also quotes a woman who relies on neighbors for childcare who would be unable to care for a young child with a disability, thus depriving the mother of the ability to work as well as a recent immigrant woman who argues that the additional medical costs would be untenable, given the needed support for the rest of the family.
Based on such sociological facts, Asch and her coauthors have invited a sort of immanent critique based on their own sociological support for the value of lives with disabilities. That is, the basis for much of the convincing account for why disability is not an unmitigated tragedy relies on the self-reportage of people with disabilities and their families. And indeed, listening to people with disabilities and prioritizing self-advocacy over expert determinations of the needs and desires of people with disabilities remains a core claim of disability activism (Charlton 2000, Carey 2010). The dedication to the premise that people with disabilities ought to be taken as authoritative when issues involve their lives ought to also hold for pregnant women. Asch and Wasserman operate on the belief that there is no basis by which genetic selection could be pursued except for faulty thinking on the part of parents without any attention to what parents who choose genetic selection narrate about their decisions. The absence of the voices of women who make reproductive decisions from Asch and Wasserman's work engages in a similar form of synechdocal thinking that they critique. Women who choose genetic selection are reduced to their relationship to the fetus, removing her from the complex familial, relational, social, and political world in which such a decision is made. Without consideration of the complex world in which women make decisions concerning genetic selection, the moral critique reifies a dangerous paternalism, now redirected at pregnant women instead of people with disabilities.
Asch and Wasserman and others may argue that such opinions as reported in Rapp cannot be taken at face value, given the pervasive stigma faced by people with disabilities. While it may be true that none of the reported additional stress or financial burdens are free from stigma's influence, it is also true that sometimes, when the part of disability stands in for the whole of the fetus, the reasoning is not based on stigma, but rather on lived experience. That is, it may not be a failure of reasoning, but a legitimate concern of the effect profound disability may have on the ability to pursue life choices that provide meaning to one's efforts. When critics of selective abortion couch their criticisms as the moral failings or moral weakness of parents, their ethical invocations run up against the demands of political subjectivity. 3
Portraying women as pursuing morally suspect reproductive decisions because of faulty parental aims is a move that mainly risks the subordination and oppression of women. Of course, such risks may be worth taking, as Asch and others may concede. But then, the question becomes, what is at stake in engaging in a moral critique of selective abortion? Asch and Wasserman articulate two reasons: "To give grounds for complaint for people with disabilities" (Wasserman and Asch 2007a, 479) and because it is part of a larger project of articulating an ideal of the parent-child relationship. As to the first reason, the epistemological flaw should be enough of a ground for complaint. One need not paint women as morally weak if they reject the imperative to become a caregiver at the expense of other endeavors. As to the second, the defense of ideals is too thin and ultimately gives greater grounds for a feminist defense of selective abortion.
The Ethic of Unconditional Welcome
Asch and Wasserman ground their moral complaint against abortion in a moral ideal of the parent-child relationship:
People should become parents out of a longing, and a commitment, to "give ourselves to a new being who starts out with the best we can give, and who will enrich us, gladden others, contribute to the world, and make us proud." (Asch, 1989)…The ideal of parenthood to which many parents aspire, and some may achieve, represents a kind of moral alchemy: the capacity of human beings to transmute biological impulses into moral ideals and practices (Asch and Wasserman 2005, 202).
This devotion to a moral relationship between parent and child does not admit for selectivity, because this devotion is to be unconditional, in part because of the absolute dependency of the child on the parent, at least in the early stages of life. This lack of reciprocity marks the family as exceptional; while we are justified in using criteria to choose our friends or potential mates because we expect mutual concern to guide those relationships, the entry of a child into the world cannot accept such mutuality, for the child's membership is an expression of unconditional love. Membership in the family for a child is not based on any particular achievement; all children should be welcome.
What are the consequences of such unconditionality, beyond the rejection of selective abortion? "Parents do not have to be saints, but they should not have children unless they are willing to modify or forego the other projects in their lives" (Asch and Wasserman 2005, 203). Thus, Asch and Wasserman set up a forced choice for those unconditionally pursuing goals that require more time, money, or effort than would be possible if they had children. While it may be true that no one can have it all, this ideal in our current world is not neutral; the parent who most often is forced to modify or forego their projects is the mother.
Elisabeth Gedge, one of the only authors to engage Asch and Wasserman's ideal of unconditional welcome critically, contests the ideal on two counts (2011). First, as an ideal, it lacks both historical and relational context. Historically, women's reproduction has become increasingly subject to surveillance and public judgment, such that even "normal" pregnancies become the site for the articulation of good and bad mothering and expectations for morally correct behavior. Thus, medical surveillance and genetic testing is actually part of an ideological belief that women's reproduction ought to be subject to such idealizations of the form of the family. The script provided for women through this medical surveillance denies her reproductive autonomy because the ideal of family is already normatively coercive. This historical fact, for Gedge, suggests that an ethic of unconditional welcome is unachievable so long as women are subject to medical surveillance that requires them to prioritize genetic information. I would extend Gedge's analysis to suggest that contrary to Asch and Wasserman's ideal of unconditional welcome, an anti-idealization of family could serve as a potentially productive site for a different sort of critique of genetic selection based on its overdetermination of the meaning of reproduction. Such anti-idealization would instead be committed to the empowerment of parents to construct families free of eugenic normalizations and surveillance. That is, if child-bearing was disinvested from any particular public meaning and value, the possibilities to construct multiple non-normative families, including those with children with disabilities, could become more routinely supported.
Gedge's second critique questions the notion that the family, as opposed to other relationships, is about a closed system of care and dependency where care is produced by parents for the dependency of children. Gedge argues that such an assumption ignores that familial relationships are embedded within other, complex relationships. Families are not autonomous units of caregiving but rely on interpersonal and institutional relations, including those with teachers, medical professionals, social workers, friends, and extended family, that provide care for one another. Gedge's reconstruction of dependency as multiply relational disrupts the ideology of the autonomous family that privatizes dependency relations and often work to increase the subordination of women and the condemnation of families that depend on public assistance (Kittay 1995, Fineman 1995). Thus, Gedge's critique calls into question the notion that the family is an exceptional site with higher moral ideals both on the grounds of feminist concerns for reproductive autonomy and on a reconsideration of dependency as multiply relational that may modify what sorts of moral demands can be made on the family.
In a similar vein as Gedge's criticisms, I would add that articulating an exceptional status of the family that remains decontextualized from sociological realities risks women's subordination when broader networks of care remain unavailable. Trying to secure an ethics against disability prejudice through articulating an ideal vision of family leaves no space for a feminist concern about the privatized family as the site of women's oppression. 4 In a sense, the lack of support for the needs of people with disabilities can be absolved as morally neutral if women's failure to assume the caretaking of children with disabilities becomes the site for moral opprobrium. That is, as long as the constitution of the family is based on the unconditional welcome of the child, there is no place for a criticism of who must forego other life projects in caring for that child in a society hostile to dependency. Unconditional welcome requires sacrifice without conditions, including sacrificing the desire to transform the world through political activism.
In the United States today, the burdens of pregnancy and child rearing fall overwhelmingly on women. From the first theorization of the "second shift" (Hochschild and Machung 1990) to more recent studies that show that women with children have the lowest wages and the least opportunity for full employment (see Shelton and John 1996 for an overview, Edwards 2002, Budig and England 2001), any childrearing requires women to sacrifice wages, work opportunities, and educational achievement. Given how important time, skills, and monetary resources are for political participation (Verba, Schlozman, and Brady 1995), Asch and Wasserman's ideal of unconditional welcome ensures that women will be less politically efficacious in the aggregate, a troubling state of affairs that replicates women's relative political and social powerlessness.
Feminists may object to the grounding of morality in an ideal of family, not only because the family has been the site of gender oppression for centuries, but also because the family is a site determined by the necessity of the day-to-day that often precludes the sort of social engagement necessary to end both gender and disability stigma. Specifically, a feminist defense of reproductive rights that relies on the importance of the ability to engage in social and political meaning-making for oneself is denied its importance by the ethics of unconditional familial welcome. When Asch and Wasserman fail to find any moral reasoning that could excuse genetic selection, 5 selective abortion becomes overdetermined by stigma and a woman's moral weakness. Contrary to such overdetermination, it may not be moral weakness that leads people to make practical decisions against the ideal of unconditional familial welcome, but rather a dedication to other values and embeddedness in different material circumstances that, in practice, contradict with the values of unconditional familial welcome.
A Different Feminist Case for Abortion
It is not only Asch and Wasserman's dedication to an ideal of family that potentially reinforces women's subordination to their reproductive capacities that makes such an approach to the question of genetic selection so problematic from a feminist standpoint. A deeper problem exists in the very moral approach that they use to argue that absolute and universal values such as an ideal of unconditional welcome ought to render any genetic selection morally suspect. That is, any approach to morality that determines that all of one type of action is good or bad hinders recognition of the contextual nature of ethical decision making. Here, then, reconstructing a feminist case for abortion entails an elaboration of a different type of morality that could incorporate both concerns for disability injustice and reproductive freedom, eschewing a totalizing rejection of genetic testing and selection.
In Rosalind Petchesky's classic study of abortion, Abortion and Women's Choice, she argues that the morality operative in abortion is a morality of praxis, where women in their specific contexts make decisions based both on received moralities and their own material conditions. The morality of praxis is distinct from an approach like Asch and Wasserman's insofar as it is not about elaborating an ideal of praxis. Praxis, by its very nature, resists such an attempt at idealization, for praxis is the process by which a theory or value system is embodied and how it is enacted in practice. The morality of praxis begins from the premise that women are already authoritative in their decision making about abortion, just as they are already acting ethically in their decisions because it is in the making of the decision that the multiple conditions, her thoughts, desires, morality, feelings, and material circumstances, result in a reckoning and outcome.
The existence of such a morality of praxis for women making reproductive decisions in light of genetic testing has been evident, not just in the work of Rayna Rapp discussed above, but in more recent work entailing in-depth interviews with women who received test results indicating genetic abnormalities of their fetuses. Alison Piepmeier has interviewed women since 2011 to uncover the decision making process by which they decided to either terminate or continue pregnancies with fetuses that tested positive for genetic abnormalities such as Down syndrome (2013, 2015). She reports that whether women choose to terminate or not, their decision making processes are strikingly similar: women struggle with what seems to be right for the fetus and their family and relay their felt trauma of learning about genetic abnormalities for a pregnancy they deeply desired. Piepmeier describes their reasoning as often paradoxical, where women both want their child to live and desire miscarriages to relieve them of making a decision. She writes that, "'Careful and agonizing thoughtfulness' defines the decision-making process, as does grief, no matter what decision is made" (13, 2015).
Piepmeier uses her findings of how women actually engage in reproductive decision making to critique both some feminist and some disability studies writings on genetic selection. Feminist writing that assumes that potential disability is always an unquestionable tragedy reifies the disability prejudices that put such authors at odds with the reproductive agenda of disability activists. At the same time, Piepmeier critiques scholars, including Asch and Wasserman, who understand all women who choose to terminate based on genetic selection as relying on anti-disability impulse. Like me, Piepmeier urges attention to be paid to the actual content of women's decision making process through feminist ethical thinking. This, she argues, will "move our scholarship and activism forward in more productive and responsible ways" (18, 2015), especially because such narratives reveal that women making reproductive decisions are "eager for community" (178, 2013). That is, women making reproductive decisions are searching for wider communities that will make particular decisions, like bringing an impaired fetus to term, possible through emotional and material support. This, Piepmeier suggests, gives support for the need of a reproductive justice agenda, which connects individual reproductive decision making to a wider agenda of economic rights, freedom from violence, and the collective responsibility for justice.
While Piepmeier's account of reproductive decision making is incredibly valuable and her dedication to reproductive justice is a persuasive political agenda, her accounts do not quite serve as a repudiation of the model of morality posited by Asch and Wasserman. Why, when women who receive test results that indicate Down syndrome react to this news as a trauma, are they not acting in a morally condemnable way? The reaction may be primarily emotional, but, on an account such as Asch and Wasserman's, this merely demonstrates the deeply held nature of anti-disability prejudice, and thus genetic selective abortion would still be the basis of moral complaint.
But if we place Piepmeier's scholarship in the context of the morality of praxis, we can reveal what is politically demobilizing about that sort of moral condemnation. Women's decision making processes around genetic selective abortion empirically include the felt trauma of an unexpected diagnosis. When faced with moral condemnation of disability activists such as Asch and Wasserman, it is unlikely that women could choose not to experience those feelings and much more likely that their experiences would be driven into secrecy and away from the possibility of forming community they find necessary for disability inclusion. The morality of praxis allows for a consideration of the political ramifications of our moral judgments that is precluded by the sort of absolutist stance evident in synecdochal critique.
Understanding abortion in the context of the morality of praxis is part of conceptualizing a more expansive account of political membership that takes seriously that how women struggle with the question of genetic selection may provide the basis of a wider political agenda that unites concerns for reproductive freedom with disability justice. Piepmeier finds that both women who decide to terminate and women who carry their pregnancies to term are all deeply invested in what it means to best care for their child (the fetus). The decision to terminate for those who decide to do so is an expression of care. Reading this expression in the context of social circumstances where many women do not have access to support systems for raising children with disabilities, the morality of praxis evident here can guide an agenda that could demand genetic counselors inform women of the support that exists for children with particular disabilities, the protection of women's access to abortion if she decides such is necessary, and activism dedicated to widening the support for families with disabled members. Thus, the morality of praxis model politicizes reproductive debates by conceptually authorizing women to affect social norms, institutions, and relations through the work of judgment about how best to live in the world of and with others. Consciousness of the responsibility that comes with the power to make such judgments allows women to articulate claims for control over their reproductive lives as a prerequisite for determining not only her own life, but the social condition produced by ideologies and material conditions in which she is relationally embedded. Those of us who are spectators to such decisions should not be called on to judge these decisions as morally right or wrong, but to understand the material, moral, and ideological conditions that we could change to try and transform the contexts that help produce decisions we disagree with.
So what are the political ideals at play when thinking of abortion decision making as a form of the morality of praxis? There is an ideational association of women's subjectivity with compulsory childbearing that undergirds women's subordination that can be partially displaced with counter-ideals of bodily self-determination and individuation. Bodily self-determination and individuation as political values can undergird intersectional disability and feminist projects, as will be discussed below in the context of the work of the activist group, Generations Ahead.
Only by making reproduction subject to women's judgment can women be considered more than just agents of social continuation and instead have the capacity to assert themselves in creating lives they find to be politically and socially meaningful because reproduction inevitably involves questions of bodily self-determination. 6 Bodily self-determination means, at the least, that someone has meaningful control over how she decides to inhabit social and political space. As Drucilla Cornell writes, "the right to abortion should not be understood as the right to choose an abortion, but as the right to realize the legitimacy of the individual woman's projections of her own bodily integrity, consistent with her imagination of herself [individuation] at the time that she chooses to terminate her pregnancy" (1995, 53). 7 Two points must be made about a notion of bodily self-determination and individuation. First, this form of bodily self-determination is not based on some masculine notion of the ability to be fully in control of one's body at all times. Rather, this form of bodily self-determination is the recognition of the necessity of the body as the site of the ability to act and give meaning to that action. It is both an understanding of who can act and give meaning to that action, as well as how decisions, in this case, reproductive decision, may be exercised (Cornell 1995, 57). Thus, the body is not a separate entity, on which decisions are enacted, but rather constitutes the very meaning and context of the possibility of decision, especially in the context of a morality of praxis.
Women who choose to abort give meaning to that action in the context of their lived bodily experience. Some of the earliest empirical investigation into abortion decision making supports this connection between bodily self-determination, reproductive decision making, and morality. Carol Gilligan's interviews in the early 1970s with women making abortion decisions partially formed the basis of her initial theorizing of the ethics of care. Those interviews demonstrated that women narrated their reproductive decision not in terms of abstract values but in terms of relationships and their own perceptions of their capacities to act as mothers in light of their material circumstances and their future desired life courses (1982). Bodily self-determination includes, then, a deep respect for the subjective experiences and felt desires of individuals in their ethical worldview of themselves and others, because such experiences and desires are part of the ongoing process by which one comes to exist for oneself as an individual whose presence in the world requires respect of others, a process known as individuation.
Second, this form of individuation, of the decision making process that allows one to account for one's experiences and desires, is not a form of abstract individualism. In the context of reproduction, individuation requires the recognition that the fetus should not be considered a separate entity from the pregnant woman, but is part of her individual understanding of self as an embodied subject. Part of what individuation means for the pregnant woman is the consideration of the question of becoming pregnant, becoming a parent, and constructing the meaning of such states for oneself. Women must be able to define the meaning of the fetus or pregnancy for herself, including through the act of abortion, if she is to have any integrated sense of self in relation to childbearing and child rearing. The alternative is a position where the compulsion to give birth remains a decision imposed on a woman at least ideologically, denying her any opportunity to claim control over her body or decisions. Absent bodily self-determination and individuation, the legitimacy of paternal authority over women will remain, ensuring a denuded subjectivity.
Of course, the meaning women ascribe to parenting and pregnancy is influenced by various social factors, including the possibility of caring for a child in the way one is expected to and various ideological factors, such as a presumed preference for a "normal" child. But the notion that only non-disabled children are valuable or that caring for a child requires rejection of disability are supported by institutional arrangements that themselves deny bodily self-determination and individuation to people with disabilities. Thus, these political ideals could form part of the demand to end such disability prejudice. Just as some forms of compulsory childrearing operate to deny women the capacity of defining themselves and thus their social and political projects as worthy of pursuit, the denial of people with disabilities' pursuit of sexuality, sexual desire, and reproduction by medical professionals and popular culture denies a deep expression of bodily integrity and sense of self for those individuals (Anderson and Kitchen 2000, Shakespeare 2000). Demands for control over one's caretaking situation, for least restrictive environments, for access to necessary medical care, and for universally designed public spaces all rely on two factors. First, the recognition of embodied difference as the starting point for ideological and structural transformations of society and, second, that bureaucratic categorizations of the needs of people with disabilities that do not include the input of people with disabilities in their design serve as impediments to the individuation—the making sense of oneself as a legitimate desiring subject—of people with disabilities.
So what would a politics surrounding genetic selection look like under such a feminist case based on bodily self-determination and individuation? To paraphrase Martha Saxton, the disability claim modifies the demand for the right to abortion with a demand for the right not to have to have an abortion (2006). What does it mean not to have to have an abortion? As numerous scholars have offered, perhaps the problem is not with what women decide in regards to genetic selection but with what medical researches decide in allocating research dollars to improve genetic tests instead of improving care services for people with disabilities (Roberts 2006, Rapp 1999, Kaposy 2013). The inertia of medical decision making that assumes the undesirability of disabilities produces a decision making situation for parents whereby they feel hung out to dry by the medical establishment upon which they have trusted when they desire those medical sources of support (Klein 2011). In this way, women's bodily integrity requires the incorporation of a central aspect of a disability activist agenda: the reformulation of medical practice towards accounting for, rather than eliminating, disability.
Such politics are not a mere abstraction, but are already existing in attempts to form coalitional strategies across movements invested in reproductive politics. As Dorothy Roberts and Sujatha Jesudason recently analyzed, Generations Ahead, a "social justice organization that brings diverse communities together to expand the public debate on genetic technologies and promote policies that protect human rights and affirm a shared humanity," has produced strategies of cross-movement conversation where groups can articulate shared ideals out of differential experiences of oppression and the articulation of both common and divergent interests (2013, 314). As Roberts and Jesudasan argue,
At the heart of Generations Ahead's method of cross-movement alliance-building are three main elements: honestly and openly discussing in face-to-face conversations key areas of conflict among movements; articulating common values upon which bridging frameworks could be constructed; and cultivating a shared advocacy agenda, followed by joint strategizing and collective action, to address specific issues (319).
The conversations had under Generations Ahead's framework do not begin with a presumption of how the participants, which included women of color, women with disabilities, and indigenous women (not to suggest that these groupings do not also overlap), ought to understand the role of genetic technologies in their lives, but rather, solicited women to think about the meaning and possible issues raised by reproductive genetic technologies.
According to Roberts and Jesudasan, members of disparate groups were able, through conversations with others, to develop a set of shared values that they could bring back to their groups in understanding how their social justice agendas already spoke to the question of genetic technologies. Such values included the need to
recognize that individuals, families, and communities are socially, culturally, and politically determined, not solely biologically or genetically; include those most impacted by these technologies to be a part of the decision-making about their use; and acknowledge the intersectionality of diverse lived experiences and advocate for long-term, holistic solutions (320).
Most importantly for this work, the participants were also able to articulate shared values on the question of genetic selective abortion that did not pit reproductive justice advocates against disability rights advocates:
Instead of these two groups being at loggerheads over whether to regulate abortion and prenatal screening to prevent the de-selection of people with disabilities… participants were able to define a set of shared values. These include:
- Reproductive autonomy should include support for people making the choice to have children, including children with disabilities, and support to raise their children with dignity.…
- Both movements should broaden their agendas to fight to improve the social, political, physical, and economic contexts within which women and people with disabilities make decisions about their lives. The focus should be on changing society, not on individual decision-making (Generations Ahead 2009, p. 2) (quoted on 322, emphasis mine).
Noticeably absent from their articulated shared values is any mention of how we ought to judge women who choose to selectively abort based on genetic tests. Rather, the values of such cross-movement work are articulated with reference to political action that is desirable and ought to be taken. The commitment to supporting people's reproductive choices reinforces a belief in bodily self-determination (choices deserve support, not judgment) and individuation (improving the contexts in which people make decisions about their lives allows for such individuation). In such a framework, which begins with the articulation of political ideals that may transform an unjust society instead of moral complaint against individual women, the possibility for a feminist pro-disability reproductive agenda can be realized.
Reproductive freedom is fundamental to women's social and political participation because of the inevitable demands on a woman's body and life in carrying a fetus to term. Beverly Wildung Harrison argues in her moral defense of the pro-choice position that
The well-being of a woman and the value of her life plan always must be recognized as of intrinsic value in any appeal to intrinsic value in a moral analysis of abortion…the value of fetal life is an important dimension of the moral question about abortion, it is not the sole or singular issue (1983, 16-17).
Thus, while morality enters into the consideration of abortion inevitably, it cannot be a moral theory that operates like the application of a rule prior to consideration of the context without risking the sort of legal proscriptions against reproductive control found in North Dakota's Genetic Discrimination Act. A moral theory should not be applied without attunement to context. But what context matters and how do we come to an agreement about what constitutes that context? Feminist defenses of reproductive rights foreground the woman's consideration of her own pregnancy or termination of that pregnancy. Attempts to create value-laden meanings across all women's decisions to terminate pregnancy represent the same denial of bodily self-determination that results in state and non-state restrictions on reproductive rights and the denial of disability self-advocacy. The debate over genetic selection can forward a disability feminist agenda if it moves beyond concern with who exactly is morally culpable for disability discrimination and towards a political outlook for desirable transformations based on a shared need for bodily self-determination.
If we reject Asch and Wasserman's characterization of selective abortion as always morally problematic, then the place for respecting bodily integrity and women's decision making remains. If this is the case, then the anti-selective abortion critique contributes something rather substantial to a feminist case for unrestricted access to abortion: the need to grapple with how medical technology is increasing the intricacies of the debate over reproductive freedom. A dialogue over the implications of new reproductive technology, specifically genetic testing, on reproductive decision making can forward the debate over abortion in new and productive ways. A joint feminist disability agenda could focus instead on possible political interventions such as more informed health care professionals and better services for people with disabilities and their caregivers; feminist abortion advocates and those who are wary of genetic testing could be engaged in a more respectful and non-combative discussion that would sensitize feminists to the concerns of disability scholars.
Of course, such a political agenda, even if it succeeded, would not eliminate genetic selective abortion. As argued above, myriad circumstances beyond medical determinations influence how and why women choose to terminate or continue pregnancies that include a fetus that tests positive for genetic abnormalities. But the attempt to ascribe to such women a universally shared morally problematic decision making process fails to respect their bodily self-determination and senses of self as a matter of course. While not every decision a woman makes with regard to her pregnancy is morally right and might merit moral condemnation, beginning from the premise that all decisions of a certain type belong to such a category requires a paternalist lack of respect that undermines political values that are more valuable in producing a robust feminist disability movement.
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I do not mean to suggest either that all disability theorists object to selective abortion nor to suggest that all objections to selective abortion are ethical in nature (see, for instance, Kittay 2000). Rather, this article questions how the ethics undergirding a particular approach to the question of selective abortion work to undermine the premises of a particular feminist politics evident in the more general claim of the necessity of abortion access for all women. Similarly, I will not be arguing for a definitive or comprehensive feminist defense of abortion because such a task would require many more pages. Rather, this article will forward one particular feminist case for abortion rights.
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Many critiques of genetic testing and genetic selective abortion focus not on the parents making the decision, but on the immorality of the medical establishment that pursues genetic testing and provides biased genetic counseling (Tremain 2006, Kaposy 2013). While such critiques are a crucial part of the debate, I will not deal with them here because they are orthogonal to the political question of whether women's access to abortion can ethically include genetic selection.
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In her work with David Wasserman, Adrienne Asch has suggested that her moral arguments, "condemn[s prospective parents], if at all, for the kind of moral failing of which we are all guilty countless times in our lives" and that "if there is a "wrong" in their course of action, it is in participating in a system that encourages intolerance and exclusion of people based on one characteristic" (2005, 210-211). There are several reasons to be suspect of these caveats. First, Asch and Wasserman analogize selection to destroying a work of art because it was made by a Jewish artist and the refusal to enter into intimate relationships with blacks (Asch and Wasserman 2005, 2007b). This anti-Semitism or racism are not the effects of a system of dating or art destruction, but rather is the moral failing of the individual who engaged in such practices. In addition, the totality of the argument about ideal family ethics have no place for understanding the role of doctors and is only about the moral failings of mothers and fathers who misconstrue the meaning of children.
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Asch's insistence that there is no contradiction between her dedication to reproductive rights and moral opposition to selective abortion may stem from her own apolitical reading of the need for reproductive rights. In her writings on abortion, she maintains that reproductive choice is mainly necessary to maintain the moral status of sexual relationships and the cultural significance of parenthood. Absent in her writing is the centrality of reproductive rights to a greater political role for women and transforming systems of gender oppression. See Asch 2007.
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The one exception is in one, perhaps two diseases, that Asch and Wasserman concede may create a life not worth living: juvenile Batten's Disease and Tay Sachs. That exception has no bearing on the argument I am making here.
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Shelly Tremain argues that genetic testing technologies are also part of a power matrix that normalizes women's bodies, especially through the production of "risky" identities such as older pregnant women (2006). While the use of genetic technologies is no doubt part of the production of female and fetal identities for greater ease of control and normalization, this fact does not change that women, once interpolated by medical technology, must respond to that identity construction. This article is not arguing for the expansion of genetic technologies, but rather is a response to univocal readings of those technologies.
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Cornell's language of bodily integrity maps onto my use of bodily self-determination. However, I have relied on a different characterization because of the problematic associations of bodily integrity with disability stigma.
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