Many valuable analyses have been developed by intersex activists and scholars on the medical management of intersex, where each look at discursive practices from medical professionals invested in them. As we know full well, medical professionals not only produce intervention techniques and protocols, but legitimate them to one another and to the public, as well as – and increasingly – to State officials and human rights organisations. Unveiling the assumptions and the prejudices underneath what they write and say has been key to the critique of their protocols, and further validated many intersex people’s convictions that what we are being subjected to is deeply wrong. Many of us also became painfully aware of how pathologizing language hurts us by providing legitimacy underpinning unconsented interventions and casting us as beings whose difference is the result of failure. The implication is that, in a perfect world, we should not exist.

Despite the difficulties inherent in familiarizing ourselves with medical discourse, doing so allows us to make our case more firmly to third parties, submitting arguments that can respond to what medical professionals put forward, aware that they enjoy unparalleled credibility in this day and age. Until now, however, we stopped short of the logical conclusion that medical discourse is part of how they treat us, whether in its support of the unconsented interventions or intersex genital mutilations, or in how they respond to our public voices and critiques. Yet, what medical professionals write and say about our bodies and about our perspectives and aspirations for self-determination are as much gestures that can harm and dehumanize, and possibly also constitute human right violations.

Dismissal of marginalized people’s participation and capacity for knowledge as injustice and dehumanization

One major stumbling block in including many medical professionals’ assertions as gestures of discrimination, harm, dehumanization or human rights violations is that collective tools to understand verbal violence are often limited to hate speech. Further, analytical tools are not widely known at this point. Among the thinkers who have contributed a lot on this level are Iris Marion Young and Miranda Fricker.[1] Though this text is not academic in nature, it is worth sharing some aspects of their thoughts, so as to popularize them and provide critical lenses to better address injustices that are still given almost free reign.

On the centrality of full participation and self-determination to justice

Young (1990, 2000) has stressed the importance of self-determination as a fundament of social justice, and defined and criticised domination as “institutional conditions which inhibit or prevent people from participating in determining their actions or the conditions of their actions.” (1990, p. 38). This, she says, also implies a dynamic where people from dominant groups “can determine without reciprocation the conditions of [dominated people’s] actions” (1990, p. 38). Being denied full participation on the basis of the social group we belong to, or how we are branded, is being cast as having insufficient worth to be allowed to speak for our own interests.

In our case, the “actions” govern what to do with our bodies, or what sorts of initiatives govern our existence. In other words, whether or not – or to what extent – we get to select the ways to talk about us, the ways to treat us on a legal level, or the ways of constructing support structures. The domination intersex people are subjected to is evident in the fact that medical professionals get to determine what to do with our bodies, while it remains unimaginable that we could exert reciprocal constraints on how medicine is practiced and on rules which grant its prerogatives of self-regulation. While some would be content to read the domination definition minimally and consider it absent as soon as token participation is granted, Young would oppose it. Participation is not equal, and not just, when those in power keep the final say over what actions are undertaken. Presuming to know their “own good” better than the people concerned themselves is a form of domination, and it produces acute injustices.

On the harm and dehumanization caused by dismissing marginalized people’s perspectives and knowledge

In Inclusion and democracy, Young (2000) stresses how being heard and taken seriously is a key requirement to full participation. Being present at the “decision-making table” is simply not enough. Miranda Fricker explores exactly that dimension, examining how marginalized people’s voices are treated and the possibility for them to emerge. She sheds light on a dimension of injustice often ignored but which plays a crucial role in inequalities, epistemic injustice, which consists of wrongs “done to someone specifically in their capacity as a knower” (2007, p. 1). One aspect of epistemic injustice, testimonial injustice, focuses on behavior from members of dominant groups towards members of marginalized groups.[2] This testimonial injustice “occurs when prejudice causes a hearer to give a deflated level of credibility to a speaker’s word” (2007, p. 1). Credibility attribution, she adds, is not the neutral, impartial process many imagine it to be. It is rather influenced by a series of unconscious and conscious social codes and assumptions about how expertise is built, and who is in a better position to see things “”as they truly are”. People from dominant groups will be more readily granted “objectivity” and expertise even as they defend a status quo that benefits them, while people from marginalized or oppressed groups will be more readily presumed to or accused of being biased and subjective, as well as having political interests, and thus not knowing what it is that they are talking about.

Fricker (2007) underscores how credibility deflation stemming from prejudice is harmful. Primarily, “to be wronged in one’s capacity as a knower [or giver of knowledge] is to be wronged in a capacity essential to human value” (p. 44).[3] It follows that not acknowledging this capacity in members of oppressed groups on the basis of prejudice against them is dehumanising. Furthermore, given that testimonial injustice often is done publicly, it has the additional effect of humiliation by casting a person and group as incapable and a “lesser human”. Behavior informed by these prejudice goes far and in often unseen, passive ways: “those social groups who are subject to identity prejudice and are thereby susceptible to unjust credibility will, by the same token, also tend not to be asked to share their thoughts, their judgments, their opinions” (p. 130). In its crudest form, they become but “mere source[s] of information” instead of “informants” or creators of knowledge”;(p. 134) objects on which external observers superimpose what they think is relevant, and project their own presumptions. Treating people as mere sources of information, incidentally, is a type of violence that academia has often perpetrated, along with medicine.

In a nutshell, domination, dehumanization and violence go well beyond physical acts. They also include speech acts and discourse, as well as how marginalized people’s voices are treated.

How medical discourse harms and dehumanizes intersex people

Instituting absence of participation by intersex people

To use the Pygmalion allegory one may begin with the same clay and fashion a god or a goddess (Money and Ehrhardt, 1972)

As we look back on the institutionalisation of intersex management, the initial way medical professionals acted towards intersex people’s perspectives was to omit to ask us, in the first place, how it is that we would want to be treated. So instead of waiting until intersex adults would formulate requests and suggestions as to protocols that could be put in place, or instead of attempting to reach out to intersex adults and consult them over what best approach should be adopted to provide care, medical professionals were convinced that they had an exclusive prerogative to manage intersex bodies, and the authority and legitimacy to establish and direct protocols. Participation of intersex people was absent. This dominant behavior led to the enormous harm many of us have been subjected to.

Fascinating and disturbing cases: Treating intersex people as mere sources of information

Evidence that the clitoris is not essential for normal coitus may be gained from certain sociological data. For instance, it is the custom of a number of African tribes to excise the clitoris and other parts of the external genitals. Yet normal sexual function is observed in these females. (Gross, Randolph and Crigler, 1966)

Here is a manifestation of domination as described by Young (2000), but also of the deeper and passive ways of testimonial injustice described by Fricker (2007), as intersex people were not even asked to share their thoughts, their judgments, their opinions about something that directly and intimately concerned their very beings and the course of their lives. Additionally, their bodies and behaviors were (and still are) thoroughly examined and the source of intense interest and curiosity. Intersex people are a textbook case of what comprises being treated as “mere sources of information”, as medical professionals not only accessed our bodies without ever asking us for permission, but have also conducted so many examinations in silence and written so many texts about our bodies, what they mean, how we could feel and grow up in life, or what comprises (our) gender, without enquiring and paying attention to what we have to say ourselves.

This is abundantly clear not only in the personal experiences we have with medical professionals, but also in the fact that our perspectives do not make it into the references of their texts.[4] Follow-up studies have long consisted in what medical professionals consider to be important to us. They also have controlled qualification of data (for instance, determining what “good cosmetic results” are, concluding that keeping an assigned gender identity is a sign of intervention success, concluding that heterosexually paired intersex individuals have good functional outcome),[5] as much as they still control evaluation criteria today. It is deep dehumanization that they produced in the contact they initiated with us, and maintained for several decades, as we were very far from being considered as beings that should be asked for their thoughts and judgments, as persons who can act as givers of knowledge and whose integrity should not be breached without their consent.

“Biased”, “egocentric”, “disgruntled” “zealots”: Treating intersex people’s voices to a range of dismissive comments

When intersex people started to publicly speak up and make their voices known, the main medical professionals’ and associations’ reactions has ranged among the following. This is by no means exhaustive or a proportionate representation of medical assertions, but they exemplify what authorities feel entitled to say. Furthermore, a close look at medical professionals’ assertions makes clear how invalidating comments far surpass those rare few who consider intersex people as equal.

Doubting their representativeness:

“It is the unhappy ones, the disgruntled ones, doctors say, who have joined the intersex movement. Those who have had a good experience and a satisfactory outcome are unlikely to seek emotional support.” – Dr. Heino Meyer-Bahlburg.

Natalie Angier. 4th February 1996. “Intersexual healing: An anomaly finds a group”. The New York Times

Refusing to engage with intersex people over the critiques they are formulating:

“Dr. John Gearhart, a urologist at Johns Hopkins University, dismissed its members as “zealots” and refused to discuss the organization.”

Natalie Angier. 4th February 1996. “Intersexual healing: An anomaly finds a group”. The New York Times

Qualifying complaints as irrelevant because they would reflect older techniques or incompetence from unqualified surgeons:

“Most of these patients were operated on years ago by children’s surgeons”

Frimberger, D. and J. Gearhart. 2005. “Ambiguous genitalia and intersex”. Urologia Internationalis, vol. 75, n. 4, p. 291-297

Dismissing complaints as groundless because they could be the result of personal psychological issues instead of non-consented interventions:

“There have been many changes in the surgical approach since 1975. Since the experiences of only 3 women were described the data are limited. Even with perfection in repair, it must be realized that many anatomical, social and emotional factors are involved in sexual function and orgasmic intercourse”

Gearhardt, John P., Arthur Burnett, and Jeffrey H. Owen. 1996. “In Reply: Re Measurement of Pudendal Evoked Potentials During Feminizing Vaginoplasty”. Journal of Urology, vol. 156, n. 3, p. 1140.

Dismissing intersex perspectives and knowledge as biased:

“However, one must keep in mind that the representativeness of the case histories on which activists base their critique and suggestion for change is totally undocumented and suspect given the understandable bias implicated in the activist role.” (p. 1618)

Meyer-Bahlburg, H. F. L., C. J. Migeon, G. D. Berkovitz, J. P. Gearhart, C. Dolezal and A. B. Wisniewski. 2004. “Attitudes of Adult 46,XY Intersex Persons to Clinical Management Policies”. The Journal of Urology, vol. 171, p. 1615‑1619.

Dismissing intersex claims for integrity and self-determination for not being supported by evidence:

Notice that they are laying down requirements that are impossible to meet, and to which they do not submit themselves to in order to justify actual unconsented interventions.

“And regarding OII’s arguing that non-surgically altered intersex babies fare well? ‘There is absolutely no scientific proof for that. No great, long-term study has been conducted to demonstrate that not to operate on children predicts better outcome, that the child will better put up with it and not risk being stigmatised’, answers Martine Cools.” [personal translation]

Author not mentioned. (25th November 2013). “Le combat des intersexes belges”. Le Soir.

“Since long-term outcome data are limited, some of the recommendations for deferral of surgery until the individual can give full consent can be viewed as lacking medical evidence and may therefore constitute a type of medical experimentation.”

Lee, P. A., Wisniewski A. B., Baskin L., Vogiatzi M. G., Vilain E., Rosenthal S. M., Houk C. and on behalf of the Drugs and Therapeutics Committee of the Pediatric Endocrine Society. (2014). “Advances in diagnosis and care of persons with DSD over the last decade”. International Journal of Pediatric Endocrinology, 19, 1-13.

Minimizing damage suffered by unconsented interventions:

For instance, by employing euphemisms, listing non-consented interventions negative effects last in enumerations, avoiding mention of sexual assault trauma, or locating effects in subjective feelings.[6a]

“Finally, quite a few patients with intersex conditions are chronically oversensitized by frequent genital examinations (47), especially in teaching hospitals, which in some appears to add to difficulties with courtship and sexual functioning.”

Meyer-Bahlburg, H. (1999). «What Causes Low Rates of Child-Bearing in Congenital Adrenal Hyperplasia?». The Journal of Clinical Endocrinology & Metabolism, 84(6), p. 1845.

“In her quest to find out whether she can ever hope to become orgasmic without having a clitoris, she has consulted concerned sex therapists and anatomists. The lack of help from intersex specialists [medical professionals who invest themselves in intersex management] has dismayed her. ‘When I began to search them out’, she writes, ‘I expected to find some help. I thought that these doctors would have excellent connections to therapists skilled in dealing with histories like mine. They have none, nor do they have any sympathy’. ” (p. 81) – Research participant.

Fausto-Sterling, Anne. 2000. Sexing the body: Gender politics and the construction of sexuality. New York: Basic books.

“(…) the many individuals with DSDs who feel damaged by the treatments they received (…) (p. 6-7)”

Hiort, Olaf, Wiebke Birnbaum, Louise Marshall, Lutz Wünsch, Ralf Werner, Tatjana Schröder, Ulla Döhnert and Paul-Martin Holterhus. 2014. “Management of Disorders of sex development”. Nature Reviews: Endocrinology.

Qualifying intersex people who speak up publicly as unknowledgeable about intersex issues:

“You intersex activists don’t know what you are talking about”

Reported by intersex activist Sean Saifa Wall from conversation with Dr. Hensle.

Framing intersex claims as unrealistic and eccentric, if not dangerous for intersex minors:

“When I hear intersex defense groups say that we cannot touch these children’s anatomy and that we must wait until they are adults before they can make a decision, one does not realize the consequences of such an attitude on the parent-child relationship, which will impact the child’s psychological development. This is not so simple as those people pretend. This attitude can have diverse repercussions.” – Dr. Cheri Deal [personal translation from French].

Pauline Gravel. 14th September 2013. “Entre le X et le Y, des êtres humains”. Le Devoir

Engaging in tone policing:

“It’s not fair. A lot has changed since then. We must learn from the advances that have been made rather than point fingers.” – Dr. Mel Grumbach.

Hendricks, M. (2000). In the hands of babes. Johns Hopkins Magazine. Retrieved 6 January 2016.

“The strident terminology used by some patient groups, referring to willful genital mutilation and abuses of human rights, is clearly unjustified.”

D.F.M. Thomas. 2004. “Gender Assignment: Background and current controversies”. BJU International, vol. 93, supp. 3s, pp. 47-50

“To [Dr. Cheri Deal and Dr. Anne-Marie Houle’s] ears, intersex activists’ demands, which they have been hearing over the last 20 years sound ‘egocentric’. ‘They are not thinking about the families’ distress’, say Dr. Houle. ” [personal translation from French]

Tremblay, Milène. November 2014. «Intersexualité: Rencontre du troisième sexe», Châtelaine, p.92

Refusing to consult intersex produced texts, reference and quote them:

An examination of the bibliography of medical texts hinting at intersex critiques will testify to this.

Misrepresenting intersex claims:

“Readers will recall that Meyer-Bahlburg and his coauthors especially target the ISNA in the introduction to their concerns, so it seems peculiar at best and rather mendacious and misleading to make the suggestion in the question posed above that ISNA advocates the use of a third gender category as the means of handling children with ambiguous genitalia”.

Holmes, Morgan. (2008). Intersex: A perilous difference. Selinsgrove: Susquehanna University Press, p. 59.

Claiming, or hinting at the notion, that they have the expertise:

“Although we lack all answers to these questions today, we do know that it is essential that treatment be individualized and attempts to develop broad management policies for such a disparate spectrum of anomalies would be ill-conceived and disregarding of a multidisciplinary knowledge base that has accrued over the last generation of scientists in this field.”

Mouriquand, Pierre, A. Caldamone, P. Malone, J.D. Frank and P. Hoebeke. (2014). “Editorial: The ESPU/SPU standpoint on the surgical management of Disorders of Sex Development (DSD)”. Journal of Pediatric Urology, n. 10, p. 8-10.

These reactions could be summed up with the three following attitudes: refusal to engage with intersex people’s critiques, giving diminished credibility to intersex activists, and presenting oneself as a better bearer or producer of knowledge.

Refusal to engage may manifest by not wanting to dignify intersex people’s grievances, critiques and demands with answers, but also as not attentively consulting – or consulting at all – the perspectives, thoughts and analyses produced by intersex people. Although medical professionals are now fully aware that intersex people are making our voices heard, there is little or no careful listening to what it is that intersex people say about our experiences, how we perceive them, and what it is that we are demanding. Ignorance of the development of intersex activism among medical professionals who invest themselves in intersex management is a testimony to this.

“They don’t know what they are talking about” or plunging the scalpel deeper into human value

This refusal to engage, or carefully listen to what it is that intersex activists say extends into not taking seriously what we say, if not misrepresent it. The diminished credibility assigned to us by medical professionals touches us on many levels: disbelief over our capacity to determine the quality and extent of the negative consequences we experience; disbelief over our capacity to determine what is best for our well-being; disbelief over assertions from intersex people who are intact, or who remained intact for some time in childhood that they were comfortable with their bodies and identities; disbelief over our capacity to acquire knowledge over our bodies and the diagnoses that we have been attributed; disbelief over our capacity to develop collective knowledge about other intersex people’s diagnostic and treatment-related experiences; disbelief over our capacity to connect and exchange knowledge with other intersex people and activists; disbelief over our capacity to notice common experiential denominators; disbelief over our capacity for rigorous analyses.

The refusal to engage and diminished credibility combine to produce a stance where intersex people’s most fundamental demand – that unconsented, non-crucial medical interventions be stopped – is answered with “but our techniques have improved”. While intersex people stress how crucial it is to respect our integrity and self-determination, these basic human rights are ignored, denied or dismissed. When one considers the fact that unconsented interventions constitute assaults of a sexual character,[6b] this situation is akin to one where victims of sexual assaults would point to their aggressors the harm that they have done, asking them that they acknowledge it, stop their behavior, and make reparations, only to have them brush these requests aside as irrelevant because they now use condoms.

This testimonial injustice cuts deep.

A process of dehumanization through many-layered harm: ignorance, mutilation, diminished credibility, and humiliation

So to begin with, intersex people are not considered human enough to first ask us whether or how it is that medicine should institute protocols for us. Then we are considered but mere sources of information. Then there is a refusal to hear us, unless we submit ourselves to tone policing and stifle righteous anger. Then there is minimization of the extent to which many of us are damaged. Then there is a reluctance to fully acknowledge our understanding of the situation. Then there is a refusal to accede to our requests about the sorts of actions we can take with our bodies. When providers of care, who we were taught to trust, cause physical and psychological damage to us through unconsented sex modifications and management, the impact is already dire. But when we turn to them for acknowledgment of our experiences and demands only to have our voices be dismissed, the harm they inflict becomes threefold. On top of initial trauma, we are dehumanized for not having our capacities as givers of knowledge acknowledged, and we are humiliated by having these capacities publicly denied by members of an institution that holds enormous power in our societies.

Collaboration, patient experts and affecting participation and acknowledgment

Yet Vilain’s experiences with patient advocates have hardened him somewhat. “I call the ones who work with us advocates; those against us activists,” he says. He remains driven by questions about sex, even if it kicks up dust. “We’re trying to listen to the community, but by the same token we’re committed to producing data and evidence.”

(Reardon, 2016)

I suspect many medical professionals would reel under this critique and portray it as generalizing and wildly unfair, especially given that they recently stress collaboration and acknowledgement of intersex people’s expertise. The 2006 Consensus statement, they claim, was produced with the participation of intersex people, the 2013 I-DSD Ghent Congress boasted participation of intersex people as well as their families as “patient experts”, and some texts state understanding towards intersex people “who feel damaged”.[7] Although it is true that not each and every medical professional behave in the ways presented above, there is nonetheless a general tendency to do so, initiated by authorities in the field and enforced by the hierarchical culture of medicine. Significant exceptions where medical professionals acknowledge our human rights are valued, but unfortunately rare. And those few who do adopt such a stance are frowned upon by colleagues.

Like many institutions, challenges to practices and authority are met with resistance, and great pressure is answered with as minimal a change as possible, or simply the appearance of change. The participation of intersex people in the Consensus statement, and acknowledgement as patient experts, is low and overstated and does not counter deficits in credibility, nor do they grant full participation to decisions over our bodies. Intersex activists also report sidelining and dismissal in those events.[8] The final say always rests in medical professionals’ hands.

Although many medical professionals may kick and scream as we throw light on the many harmful and dehumanizing aspects of their discourse towards us, it is crucial to directly address this dimension. Being framed as failed bodies who should not exist contributes to the human rights violations of our integrity and self-determination, while testimonial injustice contributes to violations of our dignity.

– by Janik Bastien Charlebois, PhD, sociology professor at the Université du Québec à Montréal.

Notes

[1] I am grateful to Morgan Carpenter for making me aware of Miranda Fricker’s work.

[2] The other kind of epistemic injustice is hermeneutical marginalisation. This injustice is structural in nature and does not arise from individual behavior.

[3] Unfortunately, the way this is formulated is capacitist, as it implies people who have less cognitive resources than the mean have no means to have equal human value. I posit a better formulation is possible.

[4] I thank Mauro Cabral for making me aware of this.

[5] See Machado et al. (2015)

[6a, 6b] I am not saying medical professionals are intent on performing sexual assaults. What I am asserting, however, is that their actions and the consequences of their actions are assaults of a sexual nature. They are asssaults on the basis that they are unconsented, and of a sexual nature on the basis that they target sexual body parts and intimacy. Furthermore, it causes sexual aggression trauma. This has been discussed in Alexander (1997) and Tosh (2013), amongst others.

[7] It is worth noting that locating damage onto the feelings of intersex people subjectifies the experience. Intersex people who “are damaged” would indicate full ownership of responsibility.

[8] Karkazis (2008) provides a full account of the kind of interactions the very few intersex activists who were present at the Chicago Consortium were subjected to.

References

Alexander, T. (1997). “The Medical Management of Intersexed Children: An Analogue for Childhood Sexual Abuse”. Intersex Society of North America. Available from: http://www.isna.org/articles/analog

Fricker, M. (2007). Epistemic injustice: power and the ethics of knowing. Oxford: Oxford University Press.

Gross, Robert E., Judson Randolph, John F. Crigler. (1966). “Clitorodectomy for sexual abnormalities: Indications and Technique”. Surgery, p. 300-308.

Holmes, M. (2008). Intersex: A Perilous Difference. Selinsgrove: Susquehanna University Press.

Machado, P. S., Costa, A. B., Nardi, H. C., Fontanari, A. M. V., Araujo, I. R. and Knauth, D. R. (2015). “Follow-up of psychological outcomes of interventions in patients diagnosed with disorders of sexual development: A systematic review”. Journal of Health Psychology, 1‑12.

Money, John and Anke A. Ehrhardt. (1972). Man and Woman, Boy and Girl: the Differentiation and Dimorphism of Gender Identity from Conception to Maturity. Baltimore: Johns Hopkins University Press, p. 152.

Reardon, Sara. (12 May 2016). “Stuck in the Middle”. Nature, vol. 533.

Tosh, J. (2013). “The (In)Visibility of Childhood Sexual Abuse: Psychiatric Theorizing of Transgenderism and Intersexuality”. Intersectionalities: A Global Journal of Social Work Analysis, Research, Polity, and Practice, 2, 71‑87.

Young, I. M. (2000). Inclusion and Democracy. New York: Oxford University Press.

Young, I. M. (1990). Justice and the Politics of Difference. Princeton: Princeton University Press.