1 “Asking About What Is Better: Intersex, Disability, and Inaugurated Eschatology” Short title: “Intersex, Disability, and Inaugurated Eschatology” This manuscript has not been published elsewhere nor simultaneously submitted for publication elsewhere. The text of the lecture on which it is based will be printed in a pamphlet by the Center for Lesbian and Gay Studies, Pacific School of Religion, Berkeley, California, for use in their own activities. Abstract: Intersex conditions, wherein individuals’ bodies cannot be categorized as clearly male or female, might be figured as a non-pathological physical variation akin to a disability. Literature in two areas, namely sexuality and the ethics of prenatal testing, demonstrates that there are existing parallels in the ways that intersex bodies and disabled bodies are understood. In Christian theological terms, the eschatology of Jürgen Moltmann is used to argue that justiceoriented eschatological theologies for intersex people must figure their bodies non-pathologically whilst not eliding the challenges experienced by some intersex people and the parents of intersex children. Keywords: Intersex, disability, eschatology, sexuality, prenatal testing, Moltmann. Author information: Susannah Cornwall is Postdoctoral Research Associate at the Lincoln Theological Institute, Department of Religions and Theology, University of Manchester, UK, where she leads the Intersex, Identity and Disability: Issues for Public Policy, Healthcare and the Church project. She is the author of Sex and Uncertainty in the Body of Christ: Intersex Conditions and Christian Theology(Equinox, 2010) and Controversies in Queer Theology(SCM Press, 2011). Name: Dr Susannah Cornwall Degree: PhD, University of Exeter, UK Address: Department of Religions and Theology, Samuel Alexander Building, University of Manchester, Oxford Road, Manchester M13 9PL, UK. E-mail: susannah.cornwall@ manchester.ac.uk 2 “Asking About What Is Better: Intersex, Disability, and Inaugurated Eschatology”1 Introduction Analysts of social, cultural and theological accounts of disability often debate what exactly it is about physical impairments, if anything, which creates problems for people. In the medical model of disability, the problem is understood as existing within the person’s own body and stemming from their particular impairment. Able, well bodies are understood as normative and good (sometimes morally as well as generally), and deviations from this norm are figured as fundamentally medical problems to which there may or may not be a medical solution. In this model, improvements for the quality of life of people with impairments often focus on funding research into medical cures for particular conditions, or otherwise improving physical function for the impaired person. By contrast, the social model of disability emphasizes not the impairment itself, but the treatment of the impaired person by other individuals and society at large, as the salient issue. Theorists who advocate this approach may argue that it is not individual impairments or impaired bodies that are the problem, but social responses to them. It is attitudes toward or failures to accommodate people with impairments that are problematic, as much as or more than their actual physical or intellectual differences. Nora Groce, in her study of Martha’s Vineyard, famously suggests that the disadvantages of a physical difference such as deafness might be mitigated by social adjustments so that they are no longer “disabling” to the same extent (Groce 1985). Between the eighteenth and twentieth centuries, Martha’s Vineyard had a high instance of hereditary deafness amongst its population. Rather than expecting the deaf individuals to adapt to the hearing world, or to form their own enclave, however, deaf and hearing residents alike used sign language. This led to a strong integration of deaf people within the community, and a lack of construction of deafness as disadvantageous. Intersex conditions, those where people have unusual physical sex such that they cannot be categorized as clearly male or female according to current definitions, might similarly be figured as a site of physical variation that could be understood as something a non-pathological difference akin to disability.2 In this paper I suggest that there are overlaps between theological 1 This essay is based on the text of the Harkness Lecture 2012, delivered at the Pacific School of Religion, Berkeley, California, in September 2012. 2 I have considered some of the overlaps between intersex and physical disability elsewhere: see Cornwall 2010a: 161-199. 3 conceptions of disability and those of intersex, and that this is particularly evident in relation to two areas, that of the erosion of agency (especially sexual agency) and the issues raised by prenatal testing for certain conditions. I will suggest that just theologies for intersex people must be grounded in an eschatology which figures their variant bodies non-pathologically whilst acknowledging that they may still be perceived as problematic by individual intersex people and the parents of intersex children. Drawing on the eschatological thought of Jürgen Moltmann, I will suggest that there is a Christian theological imperative to live out the eschatological promise in this present world, not accepting that social norms are inevitable or unchanging, but always “asking about what is better”. Intersex and impairment Both impaired bodies and intersex bodies have been considered, by some commentators, to have been colonized, othered and stripped of agency. Many critics note the ways in which people with impairments have had their authority as actors and decision-makers usurped by others, and have been judged not to be adequate self-representatives, with decisions about care being made by medics, carers and others without the input of the person in question. Some theologians note that people with impairments may also experience specifically spiritual infantilization or caricatured “super-purity” (Yong 2007: 6; Creamer 2009: 51). Intersex people, too, have often not been allowed to make their own decisions about their bodies, or to access their own medical records. In the last decade, there have been shifts to disclosure and frank talk about intersex, but as recently as 1995, a medical student could win an ethics prize for an essay in which she argued that it was legitimate for doctors to withhold information from women with Androgen Insensitivity Syndrome on the grounds that such doctors “are not actually lying: they are only deceiving” (Natarajan 1996: 569-70). This student justified the practice of failing to tell women with this condition that their testes had been or would be removed. Instead, the women concerned were told they had ovaries. 3 People with physical impairments, too, may encounter paternalistic medical discourse in which they are not deemed capable of understanding or making decisions about their treatment in a way that able people might be. 3 Natarajan argued that women with AIS would be traumatized by learning that they had testes rather than ovaries, and that doctors who sought to “do no harm” should therefore protect them by talking about their gonads as ovaries. 4 This erosion of agency comes into particularly sharp focus in the area of sexuality. Many scholars note that people with disabilities have often been portrayed or characterized as asexual (see e.g. Shakespeare et al 1996; Garland-Thomson 1997; Shildrick 2007; and the essays in Shuttleworth and Sanders 2010, as well as frequent discussion in journals such as Disability Studies Quarterly and Sexuality and Disability). This also happens with relation to intersex people. Sumi Colligan argues that this comes about because the real agency of both groups is eroded by social constructions of only “good” and able bodies as having agency. The lived experiences of intersex and disabled people are therefore subsumed to broader social narratives about the significance of their atypical bodies. Colligan says, “These bodies have been stripped of their ability to pleasure and be pleasured through the mechanism of denial, the social erasure of sexuality. From this standpoint, both intersexed and disabled bodies are lurking in the social margins … Overall, medical and cultural assumptions about sex being reserved for heterosexed, symmetrical, and genitally specific bodies tend to promote the expectation that sex and sexuality are privileges awarded to the ‘normate’ only.” (Colligan 2004: 50) Elizabeth Stuart notes that people with impairments have often been “de-sexed”, with “disabled” made a third category alongside “male” and “female” in public toilets, and “various processes of infantilization to which large numbers of disabled people are subjected, processes which include an assumption of asexuality, the explicit denial of sexual needs in group homes and the dressing of adults in child-like clothes” (Stuart 2010: 322). In other words, intersex and disabled people may often be deemed not to be sexual at all. Colligan acknowledges that, for intersex people, there has been a shift away from their historical portrayals as freak-show hermaphrodites who were often figured as especially or even excessively sexual (i.e. whose unusual physiology was made to carry inherently sexual messages). The traditional eroticized portrayal of “hermaphrodites” has, she suggests, given way to a clinical, medicalized model which understands intersex not as to do with sexuality but to do with the medical management of a medical problem. (The recent shift in terminology from “intersex” to “DSD” accords with Colligan’s account.) However, Colligan argues that the medically asexualized model itself shrouds intersex in secrecy and taboo: it makes the sexuality of intersex people literally unspeakable. Even if this stems from a good motivation not to characterize intersex people as inherently more sexual than others, the result, suspects Colligan, is a reinforcing of a social norm in which only 5 people who have normative (i.e. able, non-intersex) bodies are “allowed” sexual gratification and sexual relationships (Colligan 2004: 50-1).4 In theological terms, the sex of intersex people has also been rendered unspeakable. Sometimes this occurs because of associations between intersex and homosexuality or gender identity problems, also often figured as pathological in theological terms. Some Christian denominations have not formally recognized that intersex even exists. Those who do recognize its existence, like the Church of England, nonetheless do not usually recognize its implications or give it due consideration in its own right. The way the Church of England describes intersex in its 2003 document Some Issues in Human Sexuality (Central Board of Finance 2003) is as a kind of foil to transgender, and intersex is used here to “prove” that transgender is “only” psychological (Cornwall 2009). The specificities of intersex, including the ethical problems raised by the early corrective surgery paradigm and the Church of England’s affirmation of orders of creation grounded in maleness and femaleness, are not discussed. This is ironic, since the “givenness” of biology is appealed to both by the Church of England, and the Evangelical Alliance (Evangelical Alliance 2000) whose work on transgender the Church of England draws upon, as something divinely ordained and thus in some sense immutable. The logical outworking is that transgender people should therefore not seek to change their bodies – but corrective surgery for intersex is not problematized in the same way. The Christian denominations which will not acknowledge or properly discuss intersex as a phenomenon, or engage with the experiences of intersex people, fail to learn about the specificities of what it means sexually, spiritually and socially to have a body which is not clearly male or female. This seems to occur because so much is invested in the concept of humans being created by God with two distinct and discrete sexes. People who do not fit must be made to fit, to make them functional members of society and the Church. 4 Of course, it is important to note, as Eunjung Kim does, that insisting on sexual desires as normal and necessary for all people might in itself be perceived as the imposition of a particular cultural narrative on all disabled people. Kim says, “Although asexuality has been persistently denounced as a damaging myth imposed on disabled people, individuals with disabilities who do not identify as sexual highlight the unavoidable intersection of normality and sexuality … Disability activists in sex-positive movements often attack the stereotype of disabled people as asexual and claim that ‘we are sexual, we enjoy sex, and we have to be able to have sex’. However, the universalizing claim that all disabled people are sexual denies that asexuality can be positively experienced by any subjects with a disability, thus displaying the tendency to negatively generalize about asexuality as unnatural and indeed impossible. The insistence that sexual desire is natural for disabled people makes those people who do not feel sexual desire seem ‘abnormal’” (Kim 2011: 480, 482). 6 Colligan suspects that the asexualization of both disabled and intersex people is a function of their attempted social “rehabilitation”, the assimilation or restoration into given social norms. Citing the practice of “corrective” genital surgery for infants and children born with unusual genitalia, she says, “It is clear … that intersexed babies are being fixed, at least in part, as a form of rehabilitation that facilitates their bodily deployment into society according to heteronormative measures. In keeping with the body’s truth, doctors, however, contend that their medical tampering is simply a means of restoring the infants to their naturally gendered state, denying the role that culture plays in enforcing this imperative … In parallel fashion, in the last several centuries, people with disabilities have been subjected to pacification through the medical gaze’s fixation on essentialized and internalized bodily truths and to reform through the disciplined practices of sheltered workshops, special education, and physical rehabilitation. The benevolence and charity that have been extended to these individuals rest on their willingness, through medical treatment, physical retraining, and mental acquiescence, to strive to achieve normative standards of bodily appearance and physical, linguistic, and cognitive use. By means of these institutional practices, ‘the disabled are to be “raised up”, restored’.” (Colligan 2004: 49; cf. Stiker 1997: 108) As Colligan remarks, some people are less easily “rehabilitated” (that is, less easily written into a particular social narrative) than others. However, those whose difference might have been interpreted as recalcitrance can be treated in another way: they can be desexualized, rendered childlike and dependent and incapable of participating in autonomous adult sexual behaviours. It is easy to be benevolent to people like this (Colligan 2004: 49): their difference can be more easily framed as lack or a cause for pity. Christians such as Dennis P. Hollinger and Charles Colson describe intersex people as unfortunate, deformed, and deserving of compassion (which in this case means surgery to write them back into the male-and-female fold) (Hollinger 2009: 84; Colson 1996). If all healthy people are cisgender and heterosexual as God intended according to a particular interpretation of Genesis, then it makes sense that theologians would like to promote clear bodily sexes too. However, if not all healthy people are cisgender and heterosexual (and, indeed, not all cisgender and heterosexual people are healthy), and other kinds of genders and sexualities also reflect God’s image, there is no longer the same theological imperative to insist on clear binary physical sex as the only legitimate form of embodiment. Some intersex surgeries literally remove sex, remove genital body-parts, slicing through too-big clitorises and too-small penises in order to create a simulacrum of the perfect clitoris or 7 the perfect penis. In doing so, however, these surgeries impact on the sexualities of those concerned: “It is very painful for me … to conceptualize that what has been taken is a very specific eroticism, a hermaphroditic eroticism, that must really scare people and … cause a great deal of anxiety … That special part, our … sacred sexuality, has been ripped from us … That very special form of sexuality, arousal, and all of that that was uniquely hermaphroditic was taken. That is the crime.” (Angela Moreno, speaking in Chase 1996) “The apparently real time of sexual experience … turns into the contemplative voyeurism of pornography. Touching happens, but it is seen rather than sensed … I know from direct personal experience that this is profoundly disorienting; when genitalia are insensate, the time of the touch stretches infinitely away from the moment of physical contact. Perhaps one can recall how it felt to be touched prior to genital surgery, or imagine how it might feel if sensation were to return in the future to one’s genitalia – either way, touching and feeling are riven, too late or too early to coincide.” (Morland 2009: 285). This is corroborated by medical follow-up studies examining, for example, the effects on clitoral and vaginal surgery on intersex people in their capacity to experience pleasurable genital sensation or orgasm, and to participate in enjoyable sexual activity (Minto et al 2003, Crouch et al 2004).5 According to some critics, in discourses which insist that corrective surgery for unusual intersex genitalia is necessary, the main point of genitals becomes their appearance rather than their sensation. They exist to signify something else (a good cosmic penis; the appearance of being able to participate in penetrative sex) rather than themselves. Often, they have been created for someone else’s fulfilment (a surgeon, concerned parents, a real or projected sexual partner) than that of the individual. The genitals become an object of another’s pleasure, rather than a source of pleasure in themselves. Social norms about what constitutes a good, normal or legitimate body are clearly not the only ones in play here. Both intersex people, and people with disabilities, are also adversely affected by specifically theological pronouncements, both about the nature of a good and healthy body and gender identity, and about what constitutes “real” or cosmically-significant sex in the 5 Katrina Karkazis notes that part of the rationale behind advocating clitoral removal or reduction was the belief, grounded in older medical and psychosexual paradigms, that orgasm could occur vaginally and that the clitoris was unnecessary for normal sexual function (Karkazis 2008: 150). 8 first place (Dacanáy 2000: 11; Salzman and Lawler 2008: 122; Cornwall 2010b: 88) – in particular, when such sex is characterized as necessarily involving penetration of a penis by a vagina followed by male ejaculation. Theological accounts of the relationships between sexuality and personhood which focus too exclusively on only certain kinds of sexual activity as carrying cosmic significance risk perpetuating the idea that disabled people and intersex people alike are not really capable of being sexual in a legitimate way or of being agents or arbiters of their own sexual and bodily lives. Heteronormative theologies, and those focused too much on genital (and ideally procreative) sex as cosmically-significant, imply that people who are unwilling or unable to participate in heterosexually-partnered penetrative vaginal intercourse are not legitimately sexual at all. Medically, there may be concerns that uncorrected intersex genitalia may lead to homosexuality: “The concern is a dual one: that the penis enable penile-vaginal intercourse, but also that a ‘toosmall’ penis may result in gender-atypical desires. With an inadequate penis, the fear is not simply that these individuals will not identify as men but that they will not act like men … Another fairly widespread concern among parents and clinicians is that a large clitoris will lead to a more masculinized sexuality, or to sexual desire for females. Surgery aimed at giving the child more gender-typical genitals will therefore provide her with an appropriate sexual preference (for males).” (Karkazis 2008: 101, 149) In theological terms, genitals become a cipher for even more than in social terms: healthily embodied personhood along specifically gendered lines, the capacity to reproduce social and religious norms as well as human children, and so on. Some of the most disturbing narratives to have come out of the intersex activism movement in the last fifteen or so years are those which focus on intersex persons’ lack of power over decisions made about their bodies (see e.g. Karkazis 2008: 219-229). These have sometimes made clear that sexes and sexualities which appeared to transgress legitimate norms were forcibly altered. As Colligan notes, the freak-show portrayal of hermaphrodites as excessively or necessarily sexual was a troublesome one, but if its alternative is the ongoing asexualization and infantilization of people who are not accorded the capacity to make decisions about their own bodies, lives, and sexual activity, this raises problems of its own. Concerns about agency recur in Emily Grabham’s work on intersex and time, in which she notes that one aspect of the problematic nature of aesthetic intersex surgeries might be that they interfere with a process of actualization, in which the individuals concerned might have sought to live their identities 9 “forwards” but their doctors draw on narratives of repair and rehabilitation to justify surgery, thus appealing to a mythical past time (and perfect genitals) that never actually existed (Grabham 2012: 16). Similar rhetoric seems to be at work when theologians insist that a primal, unambiguous mythic maleness and femaleness must serve as the model for all bodies here and now. Abby L. Wilkerson, arguing from the perspective of social discourses of disability, suggests that if intersex conditions are figured as “sexual disabilities” (as, increasingly, they are beginning to be figured in legal contexts, for the pragmatic reason that although intersex people do not currently have explicit protection under US law, the recent expansion of the Americans with Disabilities Act may provide a means by which intersex people may access improved services and protection – see e.g. Menon 2011, Tamar-Mattis 2011, Greenberg 2012),6 then, like other disabilities, they are in part socially constructed (Wilkerson 2012: 192). They must be understood as social phenomena, and resistance to the exclusion and marginalization of intersex people will be social too. However, as Menon notes, there might be some disadvantages to intersex people coming to be considered disabled under the ADA. These include the solidifying of the link between intersex and “abnormality”; the transferring of stereotypes about people with disabilities onto intersex people; mutual suspicion between intersex groups and disability groups, with intersex people resentful of needing to use the ADA in order to gain legal protection and people with disabilities resentful of intersex intrusion into disability protections; and a reinforcing of account of intersex as a medical disorder (Menon 2011: 1243-6). To be sure, there may be specific side-effects of having variant intersex anatomy that means some people with intersex conditions cannot do some of the same things non-intersex people do. Two of the biggest examples are reproductive capacity and the ability to engage in 6 In 2009, the Americans with Disabilities Act (ADA) was expanded to encompass a broader range of circumstances. “Impairments to major bodily functions”, one of the clauses qualifying people as legally disabled, now include impairments to bowel, bladder, endocrine and reproductive functions. Some intersex people may indeed be deemed to have impaired endocrine or reproductive function. Intersex people who also suffer gender dysphoria may qualify as having a mental disability under the ADA. Julie A. Greenberg believes that the small numbers of intersex people, and the limited funds available to them for campaigning, means that legislation designed specifically to protect intersex people is unlikely to be passed into law. For this reason, she suggests, intersex people should press for protection under existing laws which prohibit discrimination on the grounds of disability (as well as laws prohibiting sex discrimination) (Greenberg 2012: 126). 10 “classic” sexual intercourse involving the penetration of a penis by a vagina. In the first instance, intersex people may have physical specificities which mean that conception via sexual intercourse will be difficult or impossible for them. In the case of women with complete Androgen Insensitivity Syndrome, for example, although they have vaginas which can usually be penetrated by the penis of a male partner, they have XY chromosomes and no uterus or ovaries, so they will never be able to carry or birth a baby. Some women with AIS certainly experience this infertility as a source of sadness. In the second instance, there may be specific things about the genital anatomy of an intersex person which make penetrative sex difficult or impossible, and therefore conception via this means also difficult or impossible. For example, an intersex person might have a penis which is too small to penetrate a vagina even when erect, or testes which do not produce sperm. However, many intersex people understand their variant anatomy as exactly that: variant, not pathological or disordered. This is one of the major reasons why some intersex support groups are deeply opposed to the move in medical and other circles over the last five or six years toward calling intersex conditions DSDs, short for “disorders of sex development”. Use of the term DSDs might be understood as fitting into a model of intersex care which is more akin to the medical model of disability: a DSD is a disorder, a medical phenomenon, therefore it will be most appropriately treated via medical and surgical intervention. This contrasts with the paradigm in existence immediately prior to the adoption of the DSD terminology, in which intersex activists mostly insisted that the problem for intersex people existed not in the topography of their own bodies, but in the narrow norms of a society which failed to give space for their difference. 7 Intersex and prenatal testing Another area of overlap which impacts on both impaired and intersex bodies is the question of to what extent it is legitimate to seek to diagnose particular conditions prior to birth and, if they are diagnosed, what are the ethically appropriate responses to this information in Christian terms. In recent decades, pregnant women have increasingly been offered a variety of 7 Georgiann Davis argues, “The shift has been from intersexuality to disorders of sex development in order for medical professionals to reinforce medical jurisdiction. Until such renaming, the medicalization of intersexuality was successfully being contested by intersex activists who were framing intersexuality as a social rather than biological problem, and in the process, were also closing in on medical territory” (Davis 2011: 158). 11 tests in order to determine whether the foetus they are carrying is at risk of being affected by a range of abnormalities. Some of the best-known tests include nuchal fold screening, a measurement (conducted via ultrasound) of the translucency of the tissues at the nape of the foetus’ neck, and amniocentesis, in which a small amount of amniotic fluid is removed with a needle and foetal cells are then isolated and tested for abnormalities. Importantly, certain intersex conditions/DSDs are among those for which it is now possible to screen prenatally. In some cases, this is simply a matter of identifying possible problems, which may or may not be used as grounds for abortion (Holmes 2002: 176-7; 2008: 177); in others, it is possible actually to prenatally treat the foetus in order to prevent a condition from developing. In recent years, there has been particular discussion surrounding the use of a steroid called dexamethasone (also called DXT or dex) in cases where it is suspected that the foetus may develop Congenital Adrenal Hyperplasia. If it is suspected that a pregnant women may be carrying a foetus with CAH, she may be given dexamethasone treatment, which will prevent female foetuses with CAH from developing unusual-looking genitalia. However, this is controversial for at least four reasons. First, unusual genital appearance associated with CAH is in itself rarely detrimental to health (there are some cases in which the vagina and urethra converge, which can cause subsequent problems with infection, but in most cases, the main genital side-effect of CAH is a larger-than-average clitoris). Second, in order to be effective at preventing unusual genital development, dexamethasone treatment must begin several weeks before it is possible to tell whether or not the child does actually have CAH (Fausto-Sterling 2000: 55), and indeed before it is known whether the foetus is male or female (Sytsma 2006b: 241). Sharon Sytsma claims that only one in eight foetuses at risk of CAH will actually benefit from prenatal dexamethasone (Sytsma 2006b: 250), which means that the majority of foetuses will experience unnecessary medication. In half of the cases where the drug’s use is beneficial, children will still be considered to be in need of subsequent genital surgery anyway (Sytsma 2006b: 247). Third, both dexamethasone itself and prenatal diagnostic testing for CAH can create undesirable side-effects for the woman and the foetus, including miscarriage (Fausto-Sterling 2000: 55; Sytsma 2006b; Dreger, Feder and Tamar-Mattis 2012). Fourth, a group of researchers claimed in 2012 that many women who had been prescribed dexamethasone during their pregnancies were not told that its use in the prenatal treatment of CAH was experimental and “off-label” (i.e. not officially approved for this purpose by the US Food and Drug Administration), and had been given the misleading impression that dexamethasone had been the subject of long-term trials to assess its safety (Dreger, Feder and Tamar-Mattis 2012). In actual fact, they say, dexamethasone is so controversial that its use has been discontinued by a 12 group of doctors in Sweden who had found that it raised the risk of serious medical problems among children who had been exposed to it in utero (including, significantly, a high number of children who did not in fact have CAH and had been exposed preventatively). The argument that giving dexamethasone prevents children with CAH needing to have genital surgery later does not, therefore, they say, justify raising the risks of other side-effects: “One elective risky intervention (prenatal dexamethasone) has been represented as necessary to prevent another (feminizing genital surgery)” (Dreger, Feder and Tamar-Mattis 2012). The possible risks attached to the use of prenatal dexamethasone may therefore be deemed to outweigh the possible benefits. Indeed, discussing prenatal tests and postnatal therapy for intersex conditions, Morgan Holmes says, “Their shared weakness is the twin assumption that our children are ours to make of what we will, and that we ought to will what is least complicated” (Holmes 2002: 177). In some cases, this means parents striving to prevent their children growing up with physical conditions which may lead to bullying or other psychological problems. In others, suggest Elizabeth Reis and Suzanne Kessler, there may be a broader agenda at work: “Researchers who speak of the ‘benefits’ of prenatal dex are not simply interested in preventing the confluence of the vagina and urethra. They point out that not only does the prenatally treated CAH girl avoid being born with a larger than average clitoris, but the implication is that she avoids any potential brain masculinization that might direct her toward lesbianism. These can only be constructed as ‘benefits’ of prenatal dexamethasone if an enlarged clitoris and lesbianism are viewed negatively.” (Reis and Kessler 2010: 59) Dreger, Feder and Tamar-Mattis add that Maria New, a paediatric endocrinologist who has been one of the strongest proponents of dexamethasone use in pregnant women suspected of carrying CAH foetuses, has said that one of the reasons for giving dexamethasone is so that affected girls are more likely to grow up to have maternal instincts and a heterosexual orientation and be less “tomboyish”. They quote New speaking to a group of parents in 2010 about a girl who had ambiguous genitalia as a result of CAH: “The challenge here is … to see what could be done to restore this baby to the normal female appearance which would be compatible with her parents presenting her as a girl, with her eventually becoming somebody’s wife, and having normal sexual development, and becoming a mother. And she has all the machinery for motherhood, and therefore nothing should stop that, if we can repair her surgically and help her psychologically to continue to grow and develop as a girl”. (New 2001, cited in Dreger, Feder and Tamar-Mattis 2012) 13 Morgan Holmes believes that the bodily integrity of intersex infants should take precedence over such social concerns, and that “in practice this means adopting a policy of non-interference for any atypical features more troubling to parents than to infants” (Holmes 2008: 179). Dreger, Feder and Tamar-Mattis quote Walter Miller, a professor of paediatrics and endocrinology at the University of California-San Francisco, who says, “It seems to me that the main point of prenatal therapy is to allay parental anxiety. In that construct, one must question the ethics of using the fetus as a reagent to treat the parent, especially when the risks are non-trivial” (in Dreger, Feder and Tamar-Mattis 2012). Some intersex activists have been particularly vocal in their insistence that unusual genitals do not, in themselves, compromise quality of life or lead to psychological trauma. In fact, many intersex people insist that it is unwanted medical intervention which has caused them more problems than life with the condition itself. Indeed, there are also good grounds for suggesting that cultural narratives can be changed, and that it is perhaps at least as important to change them as it is to change (or, in some cases, prevent the births of) the bodies of people who do not fit in. Reis and Kessler assert, “Physicians should not sell themselves short in imagining that they cannot – with their words as much as with their knives and drugs – influence parents to accept their children’s bodies and the possibility that their children could lead rewarding lives with those bodies” (Reis and Kessler 2010: 59). Christian theologians and other Christians, too, may contribute to a climate in which differences of embodiment are celebrated and accommodated rather than pathologized. However, whilst many Christians have been outspoken in their beliefs that prenatal testing may lead to increased marginalization of people born with impairments (Yong 2007: 66, 77; Swinton 2012: 446), or that terminations should not take place because of foetal impairment, Christian critique of prenatal and postnatal interventions in the specific case of intersex has not occurred. This may arise from especial Christian investment in the creation of distinct and discrete maleness and femaleness as constitutive of a divinely-ordered structure by which human society is to operate. Intersex bodies of babies and young children are especially figured as a problem for parents of such children (see e.g. Sanders, Carter and Goodacre 2011). Karkazis quotes an anonymous paediatric urologist describing why he believed parents of children with large clitorises would want them corrected: “Have you seen a baby with CAH? It’s grotesque! You’re the mother of a newborn with clitoromegaly [enlarged clitoris] and fused labia. Are you going to change the diaper every time? 14 Are you going to hire somebody? Who’s going to be the caretaker? Are you going to let any neighbor change that child? Absolutely, positively not. You are tied to that child every minute of every day of every week of every month!” (“Dr K”, quoted in Karkazis 2008: 146). It would be easy to say, as some intersex activists have in the past, that parents simply need education. For legal activist Anne Tamar-Mattis, parental fears and concerns must not override the more fundamental rights of the child: “Parental authority to make medical decisions has limits when the decision impinges on the child’s life or well-being, or otherwise compromises the child’s fundamental rights … This in itself does not disqualify the parents from serving as decision-makers. However, … the extensive and permanent compromise of bodily integrity involved in genital-normalizing surgery should put it in a class with other cases where parental decision-making authority is not assured.” (Tamar-Mattis 2006: 91)8 However, the majority of parents are motivated by love and fear for their children when they make decisions about their medical care, especially in the area of intersex. Parents are well aware that their children will have to navigate life in a society which may be less than welcoming toward people with an actual or perceived difference of physical sex, gender or sexuality. It is here that questions of eschatology must come to the fore. How might Christian theologians, ministers, educators and laypeople live out a theology grounded in a belief in an inaugurated eschatology for intersex people, whilst acknowledging that there might still be ways in which their bodies are understood as problematic and as sources of distress, sadness or frustration for them? 8 Tamar-Mattis continues, “In the case of intersex children, the needs of the parent are so pressing that they may interfere with independent evaluation of the child’s best interest, and skew the decision to proceed with surgery. Genital-normalizing surgery offers the promise of relieving the parents’ discomfort at having a child whose body does not conform to cultural standards of binary gender. Parents are further conflicted by shock at the unexpected news, pressure from care providers to consent to surgery, embarrassment at the prospect of telling friends and family about the baby’s intersexuality, and the desire to bring a quick end to the resulting tension. Taken together, these conflicts are sufficient to throw doubt on the authority of the parents as decision-makers” (Tamar-Mattis 2006: 100). As a result, she says, there may be instances in which it is appropriate for a court to overrule the rights of the parents in order to protect the more fundamental rights of the child (2006: 101-2). 15 Asking About What is Better “From first to last, and not merely in the epilogue, Christianity is eschatology, is hope.” (Moltmann 1967: 16) Jürgen Moltmann’s entire theological corpus has been set in the key of eschatology, and a conviction that, for Christians, hope for a new and just future can be hope in a world that is already coming about. What might this hope might mean in terms of theologies which take account of intersex? In his theology from blindness, John M. Hull makes clear that the “sighted world” is not the only legitimate or good world (Hull 2001). In common with other theologies from disability, Hull’s work queries the notion that impaired bodies are inevitably more problematic or less legitimate than able ones, disturbing assessments of pathology as attached to embodiment (Hull 2003). Intersex raises questions about bodily sexes in particular. The truth, as intersex begins to make clear, is that all bodily sexes are already less certain than we credit. Glossing the eschatology of Jürgen Moltmann, Trevor Hart comments, “The power of the future is capable of being present within and exercising a transforming influence over the present” (Hart 1999: 64). It is because sex is already disrupted and disturbed in Christ that future realized eschatology can reach back to a present in which it is only inaugurated.9 But the key here is that that future event has already begun to be transformative: Moltmann himself says, “The future always develops out of what we expect. What comes to meet us determines what we become” (Moltmann 1999: 265). Moltmann is not operating out of any naïve optimism about the positive nature of human progress toward moral perfection. Indeed, his theology is situated in a chilling awareness of quite how destructive and evil human ideology could be. Nonetheless, he believes that Christian life lived in an eschatological context means that Christian ethics are profoundly hopeful: “A Christian ethic is an ethic of lived hope and is hence related to the horizon of historical change which is open to the future … It is an ethic of change … To do what is good means asking about what is better” (Moltmann 1999: 285). Moltmann writes of anticipation, “letting one’s own present be 9 The chronological aspect is significant in Hart’s reading of Moltmann; Hart says, “There is an overlap between the two orders [old and new] not in the sense that there is some prior basis or precondition fir the new already latent in the old, but in the sense that the new has already begun to create its own presence in the midst of the old by assuming it and drawing it into new self-transcendent anticipations of what it will ultimately be” (Hart 1999: 73). 16 determined by the expected future of God’s kingdom” (1999: 286). This, for him, means a dual awareness that the new creation has already begun, but is not identical with the further new creation of the future. “What we ought to do and can do is to correspond to the future of the coming God. And this future ‘is at hand’ and ‘will reveal itself’; and in so far it thrusts us forward to do what is right, and towards the actions that correspond to God’s future in this present world, which is otherwise in contradiction to that future” (Moltmann 1999: 289). Earlier, in The Coming of God, Moltmann wrote, “Those who hope in Christ can no longer put up with reality as it is, but begin to suffer under it, to contradict it. Peace with God means conflict with the world, for the goad of the promised future stabs inexorably into the flesh of every unfulfilled present. If we had before our eyes only what we see, then we should cheerfully or reluctantly reconcile ourselves with things as they happen to be. That we do not reconcile ourselves, that there is no pleasant harmony between us and reality, is due to our unquenchable hope.” (Moltmann 1967: 21-22) In Christian theological terms, what might the inbreaking of eschatology for intersex people look like? For a start, norms grounded in stereotypical gendered difference will be continually queried, particularly in the socialization of children. The pinning of healthy gender to clear and stable sex will be questioned further, and here theologies from transgender might come to the fore (see, for example, Kolakowski 1997, Sheridan 2001, Tanis 2003, Beardsley 2005, and the essays in Althaus-Reid and Isherwood 2009). How might Christian theologians, ministers, educators and laypeople live out a theology grounded in a belief in an inaugurated eschatology for intersex people, whilst acknowledging that there might still be ways in which their bodies are understood as problematic and as sources of distress, sadness or frustration for them? The key will be speaking with and listening to intersex people, to learn how they themselves feel that their intersex identity impacts their experiences of God and others. For some intersex people, their bodily difference will remain a source of worry or distress – but it is likely that this will be mitigated by Christians insisting vocally that sexed and gendered diversity is not pathological but reflects the difference and diversity in God. Healing a particular bodily condition or state does not necessarily mean eradicating it. Healing can also mean changing a culture, and reframing or resisting a particular narrative in order to claim a body-story as legitimate and good. Churches, places where community and family are built on more than biological kinship, and where finding a place and an identity should not depend on being a biological parent, are already invested in building a world order where 17 clearly-sexed bodies doing obviously-gendered things is not the only way for things to be. “The creation of communities of identity marks the most significant catalyst for healing in the rhetorics of [intersex] individuals” (Hester 2006: 65), says J. David Hester. In an essay published in 2006, Hester discusses the rhetorics of healing and curing for intersex people, and notes that most intersex people who have been “healed” from shame surrounding their condition have done so via participation in support groups where their bodily variation is perceived as non-pathological. Rather than healing being the eradication of the physical difference itself, “‘healing’ is not ‘healing from,’ but living comfortably and healthily with oneself as intersex” (Hester 2006: 48). Medics may be able to cure some conditions of physical difference, but healing comes when people find a place and are able, through this strength, to critique social exclusion. In 2012, I conducted research involving interviews and questionnaires with ten people who identified as both intersex and Christian (with the exception of one Quaker interviewee who understood his relationship with Christianity to be more complicated). 10 Participants were recruited through intersex support and activism groups, Christian LGBT groups, e-mail lists, snowball sampling, and personal contacts. They had a range of intersex conditions, including Androgen Insensitivity Syndrome, 5-Alpha Reductase Deficiency, ovotestes (formerly called “true hermaphroditism”), genetic chimerism, and ambiguous genitalia without a specific diagnosis. 11 For most of these interviewees, local church congregations were perceived as fundamentally safe, welcoming, compassionate places. By and large, individual priests and ministers, even when they knew little or nothing about intersex before encountering the specific intersex person in question, had responded with compassion, humility, and a desire to find out from the intersex person how best they might help and counsel them. Prior to conducting these interviews, it had been my assumption that the perceived level of support and welcome offered by a given congregation would be affected by the denomination to which it belonged, and the official teachings of that denomination surrounding sex, gender, sexuality and (if in existence) intersex in particular. However, participants’ positive church experiences spanned denominations, and were not limited to explicitly “gay-friendly” churches (which might also have been expected to be more open to people with unusual physical sex). Participants were, at the time of interview, attending Church of England, Roman Catholic, Baptist, Methodist, Scottish Episcopal, and 10 The project website can be found at http://lincolntheologicalinstitute.com/intersex-identity-disability. 11 For a glossary setting out the frequency, causes and presenting characteristics of these and other intersex conditions, see Cornwall 2010a: 237-246. 18 Metropolitan Community Church congregations, and one Quaker Meeting. Several spoke warmly about the responses from their priests, ministers or other members of the congregation about intersex. Several also noted the importance of their Christian faith for their own journeys of self-acceptance and wellbeing. Indeed, the most common theme to arise spontaneously in my research interviews was participants’ belief that God intended them to be intersex. Several expressed some variation of the statement that “God doesn’t make mistakes”. Sarah (Church of England) said, “I don’t believe it’s an accident that I’ve been born this way … I was created the way I was created”. Anthony (Scottish Episcopal) said, “It’s very important for me to believe that my God … created me in a complete way and that it’s okay and meant to be this way.” Poppy (Roman Catholic) said, “To God, it doesn’t really matter whether I am a man or a woman. It just matters that I am who I am, who he made me”. Since it is at the local level that relationships happen and pastoral care takes place, it is arguably more important that an individual minister, priest or congregation greets an intersex person with compassion and understanding than whether or not the denomination’s response to intersex “from above” is a sophisticated and theologically robust one. We still live, as Moltmann noted, in a time marked by contradiction, “in which the promise contradicts present reality” (Bauckham 2005: 151). However, as Bauckham remarks in light of Moltmann, “Authentic Christian hope is not that purely other-worldly expectation that is resigned to the unalterability of affairs in this world. Rather, because it is hope for the future of this world, its effect is to show present reality to be not yet what it can and will be. The world is transformable in the direction of the promised future. In this way believers are liberated from accommodation to the status quo and set critically against it. They suffer the contradiction between what is and what is promised. But this critical distance also enables them to seek and to activate those present possibilities of world history that lead in the direction of the eschatological future.” (Bauckham 2005: 152) So the experiences of intersex Christians must also begin to feed into policy and teaching about human sex, gender and sexuality at all levels, lest the stories Christian churches tell about bodies and their significance continues to write a whole set of bodies out of signification. Transformation in churches, families and societies will therefore mean building communities of hope: communities which hope in a God who upholds and celebrates the specificities of intersex bodies. In and through this God, Christians are given strength, courage and creativity to ask what is better – for intersex people and for all of us. 19 Conclusion It is clear that, in the care of people with intersex conditions, and, in particular, of children born with atypical genital anatomy, there are a range of competing goods in play. These include the good of having genitals which do not look remarkable; the good of not having one’s bodily integrity compromised; the good of having a body which allows one to have a healthy gender identity; the good of being able to be incorporated easily into a binary-gendered system; the good of not undergoing more physical pain than is necessary; and so on. As we have seen, some critics of early corrective surgeries for intersex argue that the goods associated with nonintervention are more important than those associated with medical intervention in the case of genital surgeries which are not necessary for the physical health of the individual concerned. Christian eschatologies affirm that life after death is as significant as life before death, but that the transformed new order associated with the Kingdom of God is not something which comes about only after humans’ deaths. Rather, eschatological hope affirms that transformation of unjust systems, orders and norms is also possible here and now. Christian theologians have begun to argue that, like the bodies of people with physical impairments, the bodies of intersex people are also sites of the revelation and activity of God, and should not be understood as inherently more problematic, wounded or broken than those of non-intersex people. However, much work remains to be done in exploring what difference this conviction might make to Christian theologies more broadly, especially those which rest in an assumption that only heterosexual, normatively-gendered and clearly sexed bodies are healthy ones. Ongoing engagement with the experiences of intersex Christians will begin to ensure that these bodystories are not excluded from theological and pastoral accounts of human embodiment and faith in the future. 20 Works cited Althaus-Reid, Marcella and Lisa Isherwood (eds.) (2009), Trans/ Formations, London: SCM Press Bauckham, Richard (2005), “Jürgen Moltmann”, in Ford, David F. and Rachel Muers (eds.) (2005), The Modern Theologians: An Introduction to Christian Theology Since 1918 (Third Edition), Malden, MA: Blackwell, 147-162 Beardsley, Christina (2005), “Taking Issue: The Transsexual Hiatus in Some Issues in Human Sexuality”, Theology58.845, 338-346 Central Board of Finance of the Church of England (2003), Some Issues in Human Sexuality, A Guide to the Debate: A Discussion Document from the House of Bishops’ Group on Issues in Human Sexuality, London: Church House Publishing Chase, Cheryl [Bo Laurent] (director) (1996), Hermaphrodites Speak!, Rohnert Park, CA: Intersex Society of North America Colligan, Sumi (2004), “Why the Intersexed Shouldn’t be Fixed: Insights from Queer Theory and Disability Studies”, in Smith, Bonnie G. and Beth Hutchison (eds.) (2004), Gendering Disability, New Brunswick, NJ: Rutgers University Press, 45-60 Colson, Charles (1996), “Blurred Biology: How Many Sexes Are There?”, online at http://www.breakpoint.org/commentaries/5213-blurred-biology Cornwall, Susannah (2009), “‘State of Mind’ versus ‘Concrete Set of Facts’: The Contrasting of Transgender and Intersex in Church Documents on Sexuality”, Theology and Sexuality15.1, 7-28 Cornwall, Susannah (2010a), Sex and Uncertainty in the Body of Christ: Intersex Conditions and Christian Theology, London: Equinox Cornwall, Susannah (2010b), “Ratum et Consummatum: Refiguring Non-Penetrative Sexual Activity Theologically, in Light of Intersex Conditions”, Theology and Sexuality 16.1, 77-93 Creamer, Deborah Beth (2009), Disability and Christian Theology: Embodied Limits and Constructive Possibilities, Oxford: Oxford University Press Crouch, Naomi, Catherine L. Minto, Lih-Mei Liao, Christopher R.J. Woodhouse and Sarah M. Creighton (2004), “Genital Sensation After Feminizing Genitoplasty for Congenital Adrenal Hyperplasia: A Pilot Study”, BJU International 93, 135-138 Dacanáy, Adolfo N. (2000), Canon Law on Marriage: Introductory Notes and Comments, Quezon City: Ateneo de Manila University Press Davis, Georgiann (2011), “‘DSD is a Perfectly Fine Term’: Reasserting Medical Authority Through a Shift in Intersex Terminology”, Advances in Medical Sociology12, 155-182 Dreger, Alice Domurat, Ellen K. Feder and Anne Tamar-Mattis (2012), “Prenatal Dexamethasone for Congenital Adrenal Hyperplasia: An Ethics Canary in the Modern Medical Mine”, Journal of Bioethical Inquiry, http://www.springerlink.com/content/120203/ 21 Evangelical Alliance Policy Commission (2000), Transsexuality, London: Evangelical Alliance Fausto-Sterling, Anne (2000), Sexing the Body: Gender Politics and the Construction of Sexuality, New York, NY: Basic Books Garland-Thomson, Rosemarie (1997), Extraordinary Bodies: Figuring Physical Disability in American Culture and Literature, New York, NY: Columbia University Press Grabham, Emily (2012), “Bodily Integrity and the Surgical Management of Intersex”, Body and Society 18.2, 1-26 Greenberg, Julie A. (2012), Intersexuality and the Law: Why Sex Matters, New York, NY: New York University Press Groce, Nora Ellen (1985), Everyone Here Spoke Sign Language: Hereditary Deafness on Martha’s Vineyard, Cambridge, MA: Harvard University Press Hart, Trevor (1999), “Imagination for the Kingdom of God? Hope, Promise, and the Transformative Power of an Imagined Future”, in Bauckham, Richard (ed.) (1999), God Will Be All in All: The Eschatology of Jürgen Moltmann, Edinburgh: T&T Clark, 49-76 Hollinger, Dennis P. (2009), The Meaning of Sex: Christian Ethics and the Moral Life, Grand Rapids, MI: Baker Academic Holmes, Morgan (2002), “Rethinking the Meaning and Management of Intersexuality”, Sexualities 5.2, 159-180 Holmes, M. Morgan (2008), “Mind the Gaps: Intersex and (Re-Productive) Spaces in Disability Studies and Bioethics”, Journal of Bioethical Inquiry5.2/3, 169-181 Hull, John M. (2001), In the Beginning There Was Darkness: A Blind Person’s Conversations with the Bible, London: SCM Press Hull, John M. (2003), “A Spirituality of Disability: The Christian Heritage as both Problem and Potential”, Studies in Christian Ethics 16.2, 21-35 Karkazis, Katrina (2008), Fixing Sex: Intersex, Medical Authority, and Lived Experience, Durham, NC: Duke University Press Kim, Eunjung (2011), “Asexuality in Disability Narratives”, Sexualities 14.4, 479-493 Kolakowski, Victoria S. (1997), “Toward a Christian Ethical Response to Transsexual Persons”, Theology and Sexuality6, 10-31 Menon, Yamuna (2011), “The Intersex Community and the Americans with Disabilities Act”, Connecticut Law Review43.4, 1221-1251 22 Minto, Catherine L., Lih-Mei Liao, Christopher R.J. Woodhouse, Phillip G. Ransley and Sarah M. Creighton (2003), “The Effect of Clitoral Surgery on Sexual Outcome in Individuals who have Intersex Conditions with Ambiguous Genitalia: A Cross-Sectional Study”, Lancet 361, 1252-1257 Moltmann, Jürgen (1967), Theology of Hope, London: SCM Press Moltmann, Jürgen (1999), “The Liberation of the Future and its Anticipations in History”, in Bauckham, Richard (ed.) (1999), God Will Be All in All: The Eschatology of Jürgen Moltmann, Edinburgh: T&T Clark, 265-289 Morland, Iain (2009), “What Can Queer Theory Do for Intersex?”, GLQ 15.2, 285-312 Natarajan, Anita (1996), “Medical Ethics and Truth Telling in the Case of Androgen Insensitivity Syndrome”, Canadian Medical Association Journal 154.4, 568-570 New, Maria I. (2001), lecture on prenatal dexamethasone to parents, paper presented at conference for CARES (Congenital Adrenal Hyperplasia Research Education and Support) Foundation, 14 November 2001, Weill Medical College of Cornell University, New York, NY Reis, Elizabeth and Suzanne Kessler (2010), “Why History Matters: Fetal Dex and Intersex”, American Journal of Bioethics 10.9, 58-59 Salzman, Todd A., and Michael G. Lawler (2008), “Deconstructing and Reconstructing Complementarity as a Foundational Sexual Principle in Catholic Sexual Ethics: The (Im)Morality of Homosexual Acts”, in Hoose, Bernard, Julie Clague and Gerard Mannion (eds), Moral Theology for the Twenty-First Century: Essays in Celebration of Kevin Kelly, London: T&T Clark, 120-132 Sanders, Caroline, Bernie Carter and Lynne Goodacre (2011), “Searching for Harmony: Parents’ Narratives about their Child’s Genital Ambiguity and Reconstructive Genital Surgeries in Childhood”, Journal of Advanced Nursing67.10, 2220-2230 Shakespeare, Tom, Kath Gillespie-Sells and Dominic Davies (1996), The Sexual Politics of Disability: Untold Desires, London: Cassell Sheridan, Vanessa (2001), Crossing Over: Liberating the Transgendered Christian, Cleveland, OH: Pilgrim Press Shildrick, Margrit (2007), “Contested Pleasures: The Sociopolitical Economy of Disability and Sexuality”, Sexuality Research and Social Policy4.1, 53-66 Shuttleworth, Russell and Teela Sanders (eds.) (2010), Sex and Disability: Politics, Identity and Access, Leeds: The Disability Press Stuart, Elizabeth (2010), “Disruptive Bodies: Disability, Embodiment and Sexuality”, in Ellison, Marvin M. and Kelly Brown Douglas (eds.) (2010), Sexuality and the Sacred: Sources for Theological Reflection (Second Edition), Louisville, KY: Westminster John Knox Press, 322-337 Swinton, John (2012), “Disability, Ableism, and Disablism”, in Miller-McLemore, Bonnie J. (ed.) (2012), The Wiley-Blackwell Companion to Practical Theology, Malden, MA: Wiley-Blackwell, 443-451 23 Sytsma, Sharon E. (2006b), “The Ethics of Using Dexamethasone to Prevent Virilization of Female Fetuses”, in Sytsma, Sharon E. (ed.) (2006a), Ethics and Intersex, Dordrecht: Springer, 241258 Tamar-Mattis, Anne (2006), “Exceptions to the Rule: Curing the Law’s Failure to Protect Intersex Infants”, Berkeley Journal of Gender, Law and Justice 21, 59-110 Tamar-Mattis, Anne (2011), “Americans with Disabilities Act Removes Barriers for Wide Range Endocrine Today May 2011, online at of Patients”, http://www.endocrinetoday.com/view.aspx?rid=83668 Tanis, Justin (2003), Trans-Gendered: Theology, Ministry, and Communities of Faith, Cleveland, OH: Pilgrim Press Wilkerson, Abby L. (2012), “Normate Sex and its Discontents”, in McRuer, Robert and Anna Mollow (eds.) (2012), Sex and Disability, Durham, NC: Duke University Press, 183-207 Yong, Amos (2007), Theology and Down Syndrome: Reimagining Disability in Late Modernity, Waco, TX: Baylor University Press