Abstract
The 2005 International Consensus Conference on Intersex resulted in a substantive revision of the lexicon and guidelines for treating intersex conditions. The speed with which the new treatment protocol has been adopted by healthcare practitioners and providers is considered unprecedented. However, a number of intersex people and advocacy groups have complained that the recommended revisions are inadequately informed by the testimony of intersex people. In this paper, I argue that such complaints are valid and that, despite the conference conveners stated intention, the revisions perpetuate the epistemic injustice long endured by intersex people. By analyzing the Consensus Conference and its results as a failed attempt to redress the epistemic marginalization of intersex patients and advocacy groups, I am able to identify lingering institutional hurdles to cultivating the virtue of epistemic justice in biomedical practice.
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Notes
‘Intersex’ is an umbrella term for variations in the biological markers of sex identity—chromosomes, gonads, hormones or anatomical structure—such that they do not line up under a rigid male or female classification (Arboleda and Vilain 2014; UKIA Guide to Intersex). Incidence figures of intersex births vary depending on the conditions classed as intersex. That said, the global incidence rate is reported as ranging “between 1.7 and 4%” (Sanders et al. 2011, p. 2220), and the World Health Organization estimates that five children are born in the United States each day who are visibly intersex (“Gender and Genetics”).
‘Testimony’ is a philosophical term of art with a corresponding body of literature on how it should be defined. Here I use ‘testimony’ as does Zagzebski (2012, p. 121), to refer to “all cases in which a person A says that p to another person, B, who then believes p at least partly on the say-so of A”. This usage captures what Fricker (2007, p. 60) has in mind when developing her account of testimonial injustice as an intellectual and moral vice. She too uses ‘testimony’ in “its broadest sense to include all forms of telling” and where the hearer’s perception of the teller’s credibility plays a crucial role in believing what they are being told.
Beauvoir’s ‘One is not born, but rather becomes, woman’ is often credited with introducing the sex and gender distinction, and how to characterize this distinction has been debated ever since. For the purposes of this paper, ‘sex’ refers to a biological classification and indirectly to the criteria used by healthcare professionals in making birth sex and gender assignments. An XY newborn with relatively high testosterone levels, a penis and descended testes typically receives a ‘male’ assignment, whereas an XX newborn with a clitoris and ovaries is designated ‘female’. Intersexed biological markers problematize these birth assignments. ‘Gender-identity’ refers to a person’s self-representation or internalized identity as a female, a male or perhaps neither one exclusively. ‘Gender-role’ refers to behaviors and modes of presentations functioning as phenotypic or societal markers of gender assignment within the culture at large. Given these definitions, for me to say a treatment outcome takes a binary sexed and gendered way of being to be natural and hence normative is to say that it aims for an alignment of biological sex markers, gender-identity and gender-role whereby the assignment of ‘male’ or ‘female’ is unambiguous, stable, exclusive and exhaustive.
Since I will be arguing that using the term ‘disorder’ to describe intersex bodies constitutes a case of epistemic injustice, one might be concerned about my use of the term ‘disability’. Disability theorist Nancy Eiesland notes that modifiers referencing nonconventional bodies are often lacking in clarity and rich in marginalizing effect. She thus recommends the following terminological distinctions. ‘Impairment’ refers to an atypical bodily configuration constituting the actual loss of a physiological form or function. ‘Disability’ refers to the inability to perform some task or role because of an impairment. ‘Handicap’ refers to a social disadvantage that occurs because of an impairment or disability (1994, p. 27). In the body of the paper, I explain how Eiesland draws upon these distinctions to highlight the need for a minority-group analysis of disability. For introductory purposes, it suffices to note that while some intersex bodies are impaired in this technical sense, I support the position of intersex patient activists that most disabilities and handicaps experienced by intersex people are due to discriminatory attitudes. My claim here is that because biomedical institutions tend to conceive of disability and handicaps via an individualistic lens, they also tend to be blind to the way that accommodating these attitudes results in disabling, handicapping and even medically impairing those with atypicalIy sexed bodies. I am grateful to an anonymous referee for suggesting I clarify my use of ‘disability’.
Dotson (2012) and others have criticized Fricker’s description of the unintelligibility caused by hermeneutical injustice. There may be cases, as the adolescent White depicts, where agents are disabled or handicapped from rendering their experiences coherently intelligible to themselves. But as Dotson points out, the socio-epistemic power working to create hermeneutically marginalized groups is rarely effective in completely quashing knowledge of their situation. Resistant discourses emerge, and “there is always more than one set of hermeneutical resources available” (Ibid., p. 31). By foregrounding the availability of alternative resources, Dotson is able to introduce a type of epistemic injustice that Fricker’s concept of epistemic injustice fails to capture, namely, contributory injustice. Contributory injustice occurs when perceivers of testimony willfully refuse to acknowledge or utilize resources enabling them to better comprehend and lend more credence to what a speaker is trying to communicate. Perpetrators of contributory injustice continue to deploy biased resources that distort, erase or discount a speaker’s words when an alternative resource, one which would treat the testimony as an act of shared knowledge, is available (Ibid., pp. 32–35). Throughout this paper, I focus on the hermeneutical and testimonial injustice perpetuated by the Consensus Conference. It will become evident, however, that contributory injustice is also at work. I am indebted to an anonymous reviewer for recommending Dotson’s work as an insightful supplement to Fricker’s analysis of epistemic injustice.
In addition to the sources Fricker cites to support her account of testimonial credibility judgments, see Zagzebski (2012) on the critical role that trust plays in accounting for testimonial knowledge.
Although Fricker treats White’s obscured self-understanding as a classic case of hermeneutical injustice, she does not identify the structural identity prejudice occurring within the relevant hermeneutical resource causing this obscurity. I take this to be the answer.
It is only fair to note that this vicious cycle has been well-documented by feminist philosophers and critical race theorists for quite some time. Fricker’s contribution is expanding on their insights and relating them to current discussions in analytic philosophy on testimonial knowledge and virtue epistemology.
On Dotson’s account, hermeneutical injustice is a second-order epistemic injustice that can only be addressed by a second-order reform like the conceptual revolution described by Langton or by cultivating a virtue such as I have described, a virtue capable of altering the prevailing “socioepistemic structure” and recognizing hitherto marginalized knowers as full-fledged contributors in amassing shared epistemic resources (Ibid., p. 31). In contrast, contributory injustice is a third-order injustice manifesting itself in the fact that alternative resources fail to “gain uptake so as to influence dominant hermeneutical resources” (Ibid., p. 40). The willful refusal of the APA to avail itself of extant alternative resources for understanding homoerotic desire is a paradigm case of contributory injustice. Similarly, the fact that the testimony of intersex people and the treatment recommendations initially proposed by intersex patient advocacy groups had a limited influence on the protocol and lexicon subsequently endorsed by the Consensus Conference is an instance of contributory injustice. Responding to contributory injustice requires a third-order reform: becoming fluent in both dominant and resistant hermeneutical resources. Developing this fluency further requires establishing mutually trusting “embodied engagement” that crosses the border of distinct epistemic communities and “extends beyond conversation and dialogue” (Ibid., p, 35). Given that overcoming the two institutional hurdles to practicing epistemic justice that I identified constitute only first and second order reforms, more will be needed to address all forms of biomedical epistemic injustice experienced by intersex people.
By ‘cisgender identity’, I am referring to a gender identity that matches one’s birth sex assignment.
The frequency rate of XY individuals with androgen insensitivity is estimated at 1:20400 live births (Arboleda and Vilain 2014, p. 366). Because androgen is a testes-deriving hormone crucial in the development of internal and external, these children are genetically, chromosomally male, but with phenotypes ranging from a typically appearing female body to bodies of increasing degrees of ambiguity. In Morris’s case, the androgen insensitivity is complete, resulting in the birth of a typically appearing baby girl with internal, undescended testes (Morris 2006, p. 3).
“I recall the day my mother told me the ‘twisted ovaries’ lie. ...I was worried that my ‘ovaries’ were not removed as a prophylactic measure to prevent cancer, but that I instead actually had cancer and my parents just weren’t telling me” (Morris 2006, p. 4).
“I was shaking as I steeled myself to inquire about whether I did indeed have [a uterus], and [the college doctor] said ‘no’ without further explanation” (Ibid., p. 6).
“I know that I could never share the truth about myself with any friend, much less a romantic partner.... [Men might] ask questions I was unequipped to answer.... I was afraid that [female friends] would discover my nonexistent knowledge about periods, and both marriage and children, topics that inevitably would come up in conversation seemed completely beyond my reach” (Ibid., p. 7).
It is true that the ISNA explicitly did not advocate for use of ‘intersex’ as third gender birth assignment, advocating instead that the child be provisionally assigned as either ‘male’ or ‘female’ based on parental and doctor consultation and with the understanding the child will later determine what term best accords with their gender (“Shifting the Paradigm”). This recommendation was not referring to ‘intersex’ as the standing umbrella medical term and cannot be construed as a recommendation to replace it with ‘DSD’.
CAH results in atypically high levels of androgen. Infants with an XX karyotype and a severe classic or virilizing form of CAH often display ambiguous external genitalia, e.g. an enlarged clitoris. Approximately 75% of individuals with virilizing CAH will also be diagnosed with a salt-wasting form. Immediate medical attention is required for these infants, since they can suffer from life-threatening dehydration. No immediate attention is required to treat the simple virilizing aspects of CAH. Feminine genitoplasty are surgeries aimed at making external genitalia appear more typically female and enabling penetrative vaginal sexual intercourse. These are not considered life-saving procedures, and so when or if to perform them is debatable.
It is unclear whether the study and control groups were given the option not to perform the surgery.
As a reviewer of my paper noted, Fricker’s claim here is too strong, since at the very least individual agents perpetuate hermeneutical injustice insofar as they willfully or unintentionally draw only upon prejudicial conceptual resources for understanding what a speaker is trying to communicate. Dotson thus puts Fricker’s point better when she writes that, in the case of hermeneutical injustice, “an agent is only a tool within a socioeconomic structure” (2012, p. 29).
The modifier ‘western’ is added because the study focused on clinicians trained in European medical schools. For more on the overrepresentation of North American and European trained medical professionals at the Consensus Conference, see “Why not ‘Disorders of Sexual Development?”’.
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Drafts of this paper were presented at the 5th Annual Values in Medicine, Science, and Technology Conference hosted by the Center of Values at UT Dallas and at the Social Epistemology and Medicine Conference sponsored by the UCI Medical Humanities Initiative. I am grateful to the conference hosts and participants for their support and help in refining my analysis. I want to thank my colleagues Adam Green, Joshua Rasmussen and Rico Vitz and two anonymous referees for suggestions aimed at clarifying and strengthening my argument. I am also thankful for my research assistant Alain Leon who proofread the final draft.
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Merrick, T. From ‘Intersex’ to ‘DSD’: a case of epistemic injustice. Synthese 196, 4429–4447 (2019). https://doi.org/10.1007/s11229-017-1327-x
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DOI: https://doi.org/10.1007/s11229-017-1327-x