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Medicine and Making Sense of Queer Lives by Jamie Lindemann Nelson


s practiced, medicine bumps along with the rest of us, doing its level best to cope with the contingencies of this often heartbreaking world. Yet it’s a commonplace that much of medicine’s self-image, and a good deal of its cultural heft, come from its connection with the natural sciences and, what’s more, from a picture of science that has a touch of the transcendental, highlighting the unmatched rigor of its procedures, its exacting rationality, and the reliability of its results. In contrast, the very idea of “queer” carries with it a little taste of the uncanny. What we’re inclined to label queer resists understanding, not so much because it’s too complicated, but because it tends to be too slippery to capture neatly in our conceptual nets—that queer ache in your side, for instance, or your partner’s queer notion of doing laundry. The outmoded use of “queer,” as a way to refer disparagingly to gay people, carried similar uncanny connotations: the unnatural, the perverse. One might think, then, that the reclamation of “queer” as an umbrella term referring to the lesbian, gay, bisexual, and transgender spectrum has a pleasing depth to its irony—not only does it wrench the customary direction of evaluation conveyed by the word from condemnation to celebration, but it also hints that what you find comprehensible depends a good deal on who you are and where you’re standing. What from the perspective of many heterosexual and cisgendered people may seem opaque, exotic, threatening—erotic love directed toward someone with the same kind of body you have, lives lived in ways that challenge the immutability of birth-assigned gender—are to LGBT folk not uncanny at all, but as familiar as breathing. Jamie Lindemann Nelson, “Medicine and Making Sense of Queer Lives,” LGBT Bioethics: Visibility, Disparities, and Dialogue, special report, Hastings Center Report 44, no. 5 (2014): S12-S16. DOI: 10.1002/hast.364


I like this conceit, but alas, it is too simple. It slights the variety of difficulties associated with making sense of queerness that can vex deeply thoughtful people of undoubted good will—as I found out some years ago when I first talked about my efforts to understand my own transgender identity with a ferociously intelligent, highly sophisticated friend. She was, of course, polite about the whole thing, but she was troubled, too. Part of her distress came from her need to make what I had confided intelligible, to purge it of its queerness, coupled with the worry that her effort was not going to end well. As I recall, my friend’s thinking seemed to go like this: if I took myself to be something other than straightforwardly male, given the undisputed character of my body and my socialization, that must mean that I was a closeted Cartesian, a substance dualist who must believe not only in nonphysical thinking things, separable from bodies—one might just as well call a soul a “soul”— but also in souls that, in effect, came in pink and blue and could somehow stumble into mismatched bodies. Unsurprisingly, this just made matters worse. Although my friend didn’t say it outright, she was suspecting me of professional incompetence: a philosopher such as myself should know better than to make such a huge conceptual mistake. More importantly perhaps, the idea that the use of “queer” by LGBT folks conveys a knowing wink at the expense of befuddled straight people obscures the experience of those lesbian, gay, and bisexual people who have had to fight hard to make their own sense of their dissident desires within a world that has for so long been brutally insistent on a heterosexual orthodoxy; it neglects those trans (or “trans*”) people who have struggled to get hold of a habitable, unashamed sense of themselves despite being out of skew with the amalgam of biology and September-October 2014/ H A S T I N G S CE NTE R RE P O RT

Vindicating same-sex erotic attraction and other-gender sense of self-identification by turning them into pathologies has proven deeply and multiply unsatisfying. socialization that is ordinarily taken to ground that heavily policed concept, gender.1 Attributing such difficulties with self-understanding and self-acceptance to a queer person’s own “internalized” aversion to homosexuality or transgender seems, again, rather too simple. It isn’t solely or even chiefly a matter of what a person has inside herself, so to speak: it’s what surrounds her. Self-understanding isn’t achieved by introspection on the question, Who am I? It is, rather, a fully social, highly interactive task.2 Or perhaps it might be better to say that any introspection that does play a role in someone’s coming to know herself is itself a technique picked up from other people, whose content is made up of ideas that are part of what we’ve learned as we learn language and become inculcated into a form of life and whose success would “stand in need of outward criteria,” in the words of a reasonably well-known queer philosopher.3 Internal monologues bent on self-exploration need public standards that secure the meaningfulness of the essential distinction between coming to better understand myself and only seeming to do so. This, of course, is true for people in general, whether decidedly queer, slightly bent, or straight as strings. The “understanding versus seeming to understand” distinction means that our accounts of ourselves can’t be taken as settling the question of who we are. Yet critics of what we say about ourselves need to accept the legitimacy of our efforts at self-understanding and to accept as well, at least provisionally, the basic terms in which that understanding is couched. Making sense of oneself is tough enough if your interlocutors are merely ignorant or indifferent; doing so in the face of implacable intolerance is yet worse. We need to be alert to our imperfections, certainly. Yet at least within the contemporary world, if not all social worlds, our self-understandings also must resist any notion that our gender or our race, the range of our abilities and disabilities, our class location, whether or in what ways we might be queer or straight could make us, so to speak, “base born.” That notion incorporates a kind of degrading incoherence that threatens to damage our relationships with ourselves and with others. Being hampered in the quest for intelligibility may not rank with being beaten to death as a penalty for queerness, but neither is it trivial. Becoming well acquainted with oneself, and finding the acquaintance worth any trouble that might be taken to establish it, seems valuable in itself. Further, developing a sense of oneself that makes reason-

ably coherent at least much of what is most importantly true about oneself—an account that is responsive to reality and resistant to grandiosity, deprecation, and other forms of self-deception—is important to how we sustain ourselves as moral agents and to the directions in which we exercise that agency.4 What we think worth doing, how we reflect on choices, how we relate to others—all have rich and reciprocal relationship with who we take ourselves to be and what, on that basis, we aspire to become. People who are queer could do with allies to help counter bad practices and propaganda that can distort or derange efforts at self-understanding. If the allies’ accounts—what Hilde Lindemann might call their “counterstories”5—are to contribute effectively to countering bigotry and contributing to intelligibility, they ought to command some social heft of their own, while making sense of the distinguishing features of queer people’s lives in a way that deflects shame and guilt. Medicine might seem well positioned to fit this bill. Efforts to understand ourselves can’t help but draw on normative notions—ideas about what is appropriate or what is reasonable, for example—but queer people regularly find that distinctive and important features of their lives are not straightforwardly seen as reasonable or appropriate—quite the contrary. The value of medicine’s contribution here could be thought to rest on the idea that its core normative notions stand outside—or, perhaps, on the periphery of— the register of moral praise and blame, and of prudence and foolishness, too. Medicine trades centrally in terms that on their face seem to concern species-typical functions, rather than contestable ideals—health and illness, rather than rectitude and depravity. Thus, it has offered queer people a chance to lay hold of self-concepts that seem able to deflect shame the more effectively because they don’t come down to mere counterassertion (“No, I’m not depraved, thank you very much”). It isn’t a matter of an in-group cheering on its own. Rather, medicine’s verdicts emerge (at least aspirationally) from an impersonal, objective-asone-can-get, scientifically grounded, and, in Lindemann’s words, “culturally digestible” source.6 Insofar as medicine has conceptualized same-sex attraction or cross-gender identification as kinds of illness rather than moral failings, other social institutions have been pressured to adjust their practices and discourses to cohere with that judgment. Otherwise, they could find themselves squirming on the defensive. Individuals too have experienced a kind of dis-

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sonance when their attitudes and actions as they pertain to queer people have been out of step with the ways in which one responds to bona fide ill people. Sympathy of at least a vague sort seems called for; indignation or scorn would need pretty special stories behind them to seem creditable. Starting in the latter part of the nineteenth century, and surviving to the present, the enterprise of offering pathological accounts of same-sex attraction and cross-gender identification has aimed, in part, to exculpate people who experience such states.7 While this enterprise ushered in no queer golden age as it emerged—some individuals and institutions claiming an authority even higher than scientific medicine to validate their attitudes—queer people could still derive some comfort: hostility is not merely something we have happened to reject, as anyone on the receiving end of negative bias would be inclined to do. Rather, we could see an invidious attitude toward us as flat-out error, sustained by culpable ignorance, something like denying anthropogenic climate change. You can’t coherently blame someone for being ill, unless, of course, she has been careless with her health. Yet health-related negligence scarcely seems a promising pretext for prejudice that targets queer people; no one has any even faintly plausible story connecting carelessness to the development of same-sex attraction in one’s early teens or to the conviction of a three-year-old that being a boy is somehow or other just not right. Still, for all these apparent advantages, lesbian, gay, and bisexual folks are, in the main, long done with medicine— if not with science—as a source of self-understanding; the fight against homosexuality’s inclusion as a disease in the Diagnostic and Statistical Manual of Mental Disorders (DSM) was conducted to a triumphant conclusion more than forty years ago, and there seems no detectable eagerness to reintroduce it.8 The story for people identifying as transgender is more complicated, but the tendency seems to run much in the same direction. Vindicating same-sex erotic attraction and other-gender sense of self-identification by turning them into pathologies has proven deeply and multiply unsatisfying. In part, this is because moral vindication of queerness via illness takes one only so far: celibacy for those who are lesbian or gay and corresponding forms of restraint for transgender people seem at least in-principle options, despite the ensuing damage; if you can’t be defensibly blamed for your sexual orientation or gender identity, you might still be enthusiastically vilified for allowing it to emerge into your life. Further, my rather cheery account of illness and the attitudes appropriate thereto leaves out the disturbing reality of stigma. Medicine’s imprimatur hasn’t uniformly insulated those who are ill against opprobrium and loss of opportunity. If queerness of any variety is going to count as an illness, it will be counted as a mental illness, and sporting a diagnosis of that sort hardly sets one on the royal road to social acceptance. S14

Not such a good alliance, then, even considered wholly strategically. What’s more, there are also some basic questions about how seriously the illness story can be maintained, quite apart from considerations of how helpful it would be in practice. Tensions between beliefs and attitudes show up again here. If someone were to tell us, “I know she’s ill, blamelessly ill, but I despise her for it nonetheless,” we might wonder if he and we mean the same thing by “ill.” However, it would be equally puzzling for someone to say, “Oh yes, I am really quite ill all right, very ill indeed, but I have no interest at all in being cured.” I’m not aware of good studies of this hypothetical, but experience and anecdote suggest to me that, despite the burdens involved, few queer people are conspicuously eager to straighten themselves out. Then there is the basic question of whether it’s actually the putative disease that is doing whatever mischief is afoot. Imagine a person who finds herself diagnosed with an illness but, alerted perhaps by her reading in the literature of disability studies, concludes that the pain she suffers or the limitations she undergoes are not attributable to the condition, but rather, to the reactions the condition prompts in other people. It’s not going to take a lot of sophistication in the philosophy of medicine for her to think that the diagnosis has rather gone off the rails. As noted earlier, however, the relationship between diagnosis and identity is a somewhat more complicated matter for some transgender people.9 Some think of themselves as females or as males whose lives are hampered by a variety of “birth defects”—disabilities, if you like—that have obscured their true genders from the very start. They take it that their condition can be cured, or at least significantly mitigated, by the right kinds of medical therapies. Further, many trans people, whether or not they accept this way of framing their situation, look to medicine for a range of interventions that may make their lives more coherent and more rewarding. If access to those interventions were threatened, they would have some pretty powerful strategic reasons for resisting proposals to drop gender identity diagnoses from the nosology. Whether or not diagnostic categories for transgender people seeking medical intervention ought to be retained, however, can be distinguished from the issue of whether those categories can help make sense of a person’s life. One might court a diagnosis if it provides access to syringes and scalpels, but one needn’t look to it for self-knowledge, for, along with concerns about the costs of stigma and about whether the various facts of queerness actually seem to fit the contours of disease concepts, there is a deeper problem here: how much can a diagnosis reasonably be expected to illuminate about a person? On reflection, it seems that turning morally reviled conditions into what are (or should be) morally innocuous illnesses isn’t up to the task of helpSeptember-October 2014/ H A S T I N G S CE NTE R RE P O RT

ing queer people develop satisfying understandings of themselves, because such understandings are not the kind of thing achievable by a reference to disease or, indeed, to the kind of causal explanation in which the sciences traffic. I don’t mean to be rude to causal explanations; they are an extremely important feature of how almost all of us understand and make our way through the world. Yet not everything that’s murky can be clarified by way of understanding causal regularities. One needn’t embrace any fancy metaphysics—surely not substance dualism—to suspect that such general, highly integrative, and richly normative phenomena as one’s “sense of life” or “general perspective on things” or even “what it’s like to be me” can’t as a general matter really be made fully intelligible by explanations of that kind. Suppose we allow that someone’s propensity to be attracted by people of a particular gender (or to show, in this respect, a happy absence of favoritism with regard to gender) will tend to be a significant part of the person’s overall sensibility—that it may, for example, influence not just with whom he wants to copulate but with whom he wants to grow old and affect not only the erotica she finds arousing but the poetry she finds it easy to memorize. What it is like for some concrete person to be a lesbian or to be gay or bisexual, so understood, is just not likely to be the kind of thing that can be satisfactorily explained by reference to a disease, or indeed to any more or less discrete event or process describable in scientific terms and linked by lawlike regularities to other such events or processes. The connections with other features of experience will be too rich, too varied, and too particular to be so captured. Being queer may well be the kind of thing that supervenes on a wide assortment of different configurations of natural and social facts, configurations that may vary from person to person and over time within a person’s life. Or maybe there is some very obscure piece of biology—perhaps it’s in the pineal gland—that all queer people share and all straight people lack. But the variety of ways in which a person’s queerness ramifies through her life suggests that even if there were some invariant physical difference, it couldn’t provide the kind of account that could make sense of the whole phenomenon. If this line of thought is on track for understanding what it is for someone to be sexual, it would plausibly hold as well for understanding what it is for someone to be gendered, a status that involves a changing, socially variable suite of dispositions even more highly defused through life. And when I am reflective, this line of thought does seem on track—after all, there isn’t a science (certainly not one of those that are called “natural”) that takes “my sense of life” as one of the kind of things that it tries to explain. Yet experientially, I distinctly recall that getting my diagnostic code (302.85, it was, in the old DSM-III) in my mid-

twenties felt like a public acknowledgment of what had been a private, deeply difficult reality—in part hard for me for the same reason as it was for my ferociously intelligent, highly sophisticated friend, because something that seemed so deeply entrenched in my life was at the same time so obdurate to my understanding. The diagnosis didn’t lead to the solution of any of my concrete problems. Yet it had an expressive impact that went beyond the adequacy or otherwise of the underlying science—one that helped me move from a state that seemed idiosyncratic and largely inarticulate to a place that was shared and could, at least in principle, be voiced. “Gender Identity Disorder in Adolescents and Adults” was hardly poetry. Yet like poetry, while it made “nothing happen,” it seemed to me to open up “a way of happening, a mouth.”10 Recollected now in reasonable tranquility, I think that my reaction then reflected the impact of a social regimen of gender that for some reason is wracked with anxiety about guarding its borders. It constricted my sense of how I might express the gender-inflected parts of my life to a point so narrow that a diagnostic category seemed more than adequate to the task. What I might have to say as a transgender person, that for which I would need all the social stage-setting that allows our speech acts to be felicitous, our language games playable, was not to the point. It seemed enough at the time that there was some air with which to speak at all. In the forty-plus years since the battles over the place of homosexuality in the Diagnostic and Statistical Manual were fought, lesbian, gay, and otherwise queer people have continued to build communities and other social structures in which they could achieve and share ways of understanding themselves that were not shaped by such anxieties. They have placed their ways of making sense of their lives—their counterstories—into rivalry with denigrating narratives. Bigotry isn’t in anything like full retreat; people still are killed for being queer. Yet as barriers to their fuller inclusion in American social life seem to topple week by week, it is clear that, in many important ways, they have been strikingly successful in doing so. People who occupy the many different positions within the trans spectrum have lagged a bit behind; the very legitimacy of transgender lives is still severely contested. Yet in the past few years alone, they too have made marked strides in the same direction. There has been a similar kind of pressure exerted against interpreting their various kinds of dissent from orthodox norms of gender as pathological, and that pressure has gained a certain amount of traction. Nosology is changing: no longer are transgender people who come to medicine’s attention labeled as having “gender identity disorder”; rather, “gender dysphoria” is the term used both in the most recent DSM and in the

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standards of care promulgated by the World Professional Association for Transgender Health.11 This change at least acknowledges the importance of mitigating stigmas associated with pathologization. There does seem to be a difference between an official determination that there is something wrong in one’s response to the gender one was saddled with at birth and an acknowledgment that one finds that gender assignment very hard to bear. Further, the relationship between medicine and people who are transgender shows other signs of encouraging development. Until very recently, for example, “out” transgender people were regularly asked questions in very public venues about their medical histories and, in particular, the state of their genitals that nobody would dream of asking cisgendered people; some equally public and clearly explained refusals to answer those questions have underscored the many ways transgender lives are lived and asserted trans people’s equal claims to dignity and a semblance of privacy. What this all suggests to me is that the proper route for making sense of queer lives is not by digging down deeper into human biology but rather by looking out at the continued construction and reconstruction of everyday institutions and interchanges in which those lives can be lived openly, securely, and resonantly. This more social route will not end up providing intelligibility by means of neat answers to questions like, Why am I attracted to people of that gender and not this? or, Why do I feel as though I am at home in that gender but not this? Scientific investigation of these questions continues apace, of course, and it is often pursued by researchers and welcomed by subjects in the hope that a convincing showing that queer people were “born this way” will undermine antiqueer prejudice. History, alas, suggests that what one is “born as” can be as powerful a basis for bigotry as what one chooses. The success of the social route, rather, could be seen in the erosion of the urgent sense that scientific explanations are required to make being queer habitable for oneself or acceptable to others. Any sense of urgency attached to these questions would then reflect ordinary academic curiosity rather than existential angst. The kind of explanation of various forms of attraction to others and senses of self that medicine has provided, then, is not so much an effective response to the oppression of queer people as a sign of it. If I am right about this, medicine’s role in the way forward won’t be as a privileged source of intelligibility, rooted in its special relationship to the natural sciences, or in the techniques it commands. But if the gains already made have depended on building the right kind of social structure and on more people being able to live less fettered lives within them, the role


of medicine in contributing to the intelligibility of queer lives is for medicine to become more fully one of those structures, doing its best as it bumps along with us in the contingent world to end practices that marginalize and otherwise harm or wrong queer people in the office, the clinic, the lab, and in the precincts where health policy is made. Applying a good helping of ingenuity to the issue of figuring out how to expand access to relevant medical procedures for transgender people while continuing to rid the process of pathology’s taint seems a promising project; ending assumptions that patients are straight until proven otherwise is another. Widely disseminating this special report wouldn’t hurt either.12 1. The asterisk is increasingly coming to be used to indicate the variety of ways people find to dissent from orthodox practices involving gender identity. I won’t follow that convention here, but will typically intend “trans” and “transgender” to be understood capaciously, unless context indicates otherwise. 2. Annette Baier was very good on this matter. See her chapter “How to Get to Know One’s Own Mind: Some Simple Ways,” in Reflections on How We Live (New York: Oxford University Press, 2009), 128-47. 3. L. Wittgenstein, Philosophical Investigations, 3rd edition, trans. G. E. M. Anscombe (New York: Macmillian, 1958), § 580. 4. I have in mind here such philosophers as Charles Taylor, Christine Korsgaard, and Iris Murdoch, who, in different ways and with different emphases, assign our self-concepts an important moral role. See also Hilde Lindemann, Holding and Letting Go: The Social Practice of Personhood (New York: Oxford University Press, 2014). 5. H. Lindemann (Nelson), Damaged Identities, Narrative Repair (Ithaca, NY: Cornell University Press, 2001). 6. Ibid., 151. 7. For a searching critique of the methodology of the leading research programs in this area through the end of the last century, and a thoughtful discussion of their moral rationales, see E. Stein, The Mismeasure of Desire: The Science, Theory, and Ethics of Sexual Orientation (New York: Oxford University Press, 2001). 8. See R. Bayer, Homosexuality and American Psychology: The Politics of Diagnosis (Princeton, NJ: Princeton University Press, 1987). 9. Due in part to the HIV pandemic, matters may be more complicated for queer people in general, as Lance Wahlert argues in his “The Painful Reunion: The Remedicalization of Homosexuality and the Rise of the Queer,” Journal of Bioethical Inquiry 9, no. 3 (2012), 261-75. 10. Borrowed from W. H. Auden, “In Memory of W. B. Yeats,” in Collected Poems: Auden (New York: Vintage, 1991), 247-48. 11. American Psychological Association, Diagnostic and Statistical Manual of Mental Disorders, 5th edition (Arlington, VA: American Psychiatric Publishing, 2013); World Professional Association for Transgender Health, Standards of Care for the Health of Transsexual, Transgender, and Gender Nonconforming People, 7th edition, 2011, http://www.wpath.org/publications_standards.cfm. 12. I’m grateful to Hilde Lindemann for her contributions to the intelligibility of this essay, and still more for her contributions to the intelligibility of its topic.

September-October 2014/ H A S T I N G S CE NTE R RE P O RT

Medicine and making sense of queer lives.

As practiced, medicine bumps along with the rest of us, doing its level best to cope with the contingencies of this often heartbreaking world. Yet it'...
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