Intersex Activists in Israel: Their Achievements and the Obstacles They Face
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This article focuses on the dynamic between the medical policy on intersex bodies and intersex activists in Israel. Recently, in many countries changes have taken place in medical guidelines regarding intersex patients and laws that regulate medical practices and prohibit irreversible surgeries for intersex babies for cosmetic reasons and without the patient’s consent. In Israel, intersex activists are limited by several factors. On the one hand, they are influenced by the achievements of intersex activism around the world but on the other, the pathologizing medical discourse and socio-medical practices, which include early diagnosis, early irreversible surgeries, and secrecy surrounding intersexed bodies, present obstacles to achieving bodily autonomy for intersex individuals and social recognition of different sex development. Nevertheless, intersex activists are attempting to find different social and media spaces in which to achieve public acknowledgement and future bodily autonomy for intersexed people and seeking medical professionals’ cooperation. Recently, the Israeli Ministry of Health published a new circular for intersex/DSD patients, and while it does not clearly forbid irreversible surgeries, it provides information about the complexities of intersex people and their experience.
KeywordsIntersex bodies Intersex activists Bodily autonomy Socio-medical practices Israel
This article focuses on the dynamic between the medical policy regarding intersex bodies and intersex activism in Israel. The struggles of intersex activists have historically been and continue to be directed toward the medical system and medical practices. In the 1950s, the Johns Hopkins team established and reproduced the protocol according to which harmful, irreversible medical treatments were performed on intersex babies and children in order to “normalize” their bodies without their consent or knowledge of their conditions (Chase 1998, 2003; Karkazis 2008; Feder 2014; Kessler 1998; Preves 2003). Since the 1990s, intersex activists have been fighting for bodily autonomy, mainly to halt the social and physical damages wreaked by medical interventions aimed at regulating intersex bodies to fit male or female norms. Genital mutilation, damaged erogenous sensitivity and genital sensation, lack of reproductive potential, somatic alienation, a sense of shame and need for secrecy, social isolation, deep depression, and suicide attempts are only some of the myriad long-term consequences of such interventions (Creighton 2001, 2004; Crouch et al. 2008; Farkas et al. 2004; Liao 2006; Minto et al. 2003; Morland 2001, 2009; Schober 2004; Warne et al. 2005).
Many intersex activists have attempted to raise awareness of non-binary sex/gender categories among the general public and medical professionals and end the cycles of secrecy and concealment that surround intersex bodies (Davis 2015; Holmes 2008a, 2009; Sytsma 2006). Recently, various countries, including Malta,1 Chile, and Portugal (Guilbert 2018) have prohibited irreversible cosmetic genital surgeries for intersex babies. In Germany and other countries, there are new guidelines for medical professionals that ban irreversible surgeries performed for cosmetic reasons but permit them for health reasons when babies’ lives are at risk, for example in the case of cancerous tumours of the gonads, bladder infections, urethral obstruction, and so on (Cools et.al 2018). These changes have come on the heels of the activism of scholars, medical professionals, and intersex support groups, for example Organization Intersex International (OII), an international umbrella organization of intersex activists that publicizes news about intersex people, their achievements, and the obstacles they face (OII Intersex Network 2018). The World Health Organization (WHO) found that irreversible medical procedures, especially genital surgeries, are frequently performed on intersex infants for reasons other than ensuring healthy physical functioning, and determined that they are unjustified (Elders, Satchers, and Carmona 2017). These seeds of change are crucial in the quest for bodily autonomy for intersex people, and although their consequences have yet to be empirically assessed, they comprise positive steps toward the social recognition of intersex people and their bodies.
Despite the encouraging changes in some countries, in Israel intersex activism has remained limited. Although there is a support group for parents of children with 46XX congenital adrenal hyperplasia (46XXCAH), its members consider this condition a chronic women’s disease, not an intersex condition or category. The group’s members usually perceive early surgeries for constructing/correcting their daughters’ genitals as necessary socio-medical procedures that will allow them to raise their children as normative girls. Only very few intersex activists are actively seeking social spaces in which to achieve public acknowledgement and future bodily autonomy for intersex people. Recently, some progress has been made, including the publication of a new circular on intersex/DSD patients by the Israeli Ministry of Health and the establishment of a new intersex activist group called “PELE” (in Hebrew an acronym for “activism for intersex”), as I will discuss below. I will begin by describing how medical discourse and practices aim to conceal intersex bodies, and how this concealment creates one of the most crucial obstacles faced by intersex activists in Israel. Next, I will describe how intersex activism manoeuvres between the medical and human rights discourses to effect change in both the social status of intersex people and the medical policy aimed at their treatment.
This empirical article is based on narrative studies with biomedical professionals, parents of intersex children, and intersex activists in Israel. I have been conducting research on intersexuality in Israel that focuses on the biomedical discourse on intersex bodies, parents’ position and ways of coping, and the living experiences of intersex adults since 2005. From 2005 to 2009, I conducted narrative interviews with twenty-two professionals who diagnosed and treated intersex patients. I interviewed six parents of intersex children and eleven intersex adults (Meoded Danon 2014, 2015). Since 2014, I have been conducting narrative research with medical professionals, parents of intersex children, and intersex adults in Israel and Germany in order to explore the differences and similarities between the two countries in this field. In Israel, I interviewed sixteen medical professionals, four of whom took part in the previous study, five parents of intersex children, and three intersex adults. The interview location was decided according to the participants’ wishes. The biomedical professionals among the participants, who worked mainly in public hospitals, usually chose to be interviewed in their offices, while the parents and intersex adults mainly preferred meeting at coffee shops or their homes.
The study was approved by the Institutional Review Board of the Department of Sociology and Anthropology of Ben-Gurion University of the Negev. In my consent form, I described the research purposes that concerned the biomedical discourse on intersexuality (the term DSD only later came into use, and was added to the consent form) and explained that my aim was to learn about the lived experience of intersex people and parental experience with the medical establishment. I stated my commitment to participant confidentiality and my respect of participants’ desire to discontinue their participation at any time.
The main challenge I faced during my research was the secrecy that surrounds intersex bodies and intersex people. This secrecy, which I later learned is an integral part of the medical policy for intersex patients, made it difficult to find participants for my research. In 2005, the first endocrinologist I interviewed gave me an invitation from an intersex activist announcing that she was establishing a new support group for intersex people and their families. I contacted this woman, and she assisted me in locating other intersex people and their parents in Israel. It took me four years to interview only four intersex people, not because of intersex’s rarity but because of the secrecy and concealment of these bodies. I sought additional participants in many places other than the support group, including internet forums for parents of intersex children and forums on endocrinology, urology, fertility, LGBT, and so forth. At first, I published my research aims using the term “intersex,” but after I received no relevant responses, I began to use the names of specific “intersex conditions,” stating that I was searching for people/parents of children born with congenital adrenal hyperplasia, Klinefelter syndrome, androgen insensitivity syndrome, hypospadias, and so on. This strategy increased the number of responses, and I managed to add more participants to my research.
As a researcher, I had to manoeuvre between maintaining my participants’ privacy and breaking the circle of secrecy regarding intersexuality that exists in Israel. The concealment of intersex bodies has preserved medical power and control over intersex patients, embodied in the doctor–patient relationship. But the medical treatment of intersex bodies must change because it harms intersex people physically, emotionally, and socially, as I learned from intersex activism around the world, especially in North America (Intersex Society of North America) and scholars in this field (Chase 1998; Dreger 1999; Kessler 1998; Preves 2003). In order to understand the gap between physicians’ and intersex activists’ discourses, I asked the biomedical professionals about their intersex patients’ feedback regarding their treatment practices (genital surgeries, the removal of gonads, and hormonal replacement therapy). The doctors usually explained that their patients were happy and satisfied with their treatment and that the intersex activists comprised a minority and did not represent all their patients. I asked intersex people and their parents about their knowledge and understanding of the biomedical discourse, which was usually absent or partial. This discursive gap has always existed in Israel, affecting public awareness and knowledge on intersex people and maintaining medical authority and control over their bodies. In the following section, I describe how the medical policy on intersex bodies in Israel limits intersex activism. All the names of the participants I quote here are pseudonyms.
Medical Authority Over Intersex Bodies in Israel
We currently live in an era in which almost all the information we need is highly accessible and available with the click of computer mouse, yet most Israelis, including intersex people themselves, have rarely heard the term “intersex” or know about the wide spectrum of sex development. This lack of knowledge is not coincidental but rather medically oriented to separate pathological and normalized bodies rhetorically and in practice, despite the fact that most intersex conditions present no health risks (Holmes 2008b, 177) and, indeed, the main risks to intersex bodies stem from socio-medical reactions and practices. The unique somatic development of intersex bodies challenges the fundamental dimorphic social soma/gender order, which is the line between women’s and men’s bodies. Biomedical professionals act as the gatekeepers of (normative) social bodies by using discourse and various practices to maintain the alleged dimorphism. I will describe here the discourse and practices of the biomedical professionals towards intersex bodies.
Dimorphic Sorting and Naming
What determines the differentiation of male or female is actually one gene, SRY. This gene is located on the Y chromosome, but sometimes for certain reasons in an XX female, the SRY gene is located on one of the Xs and then such a female will look like a male on ultrasound, but in an amniotic fluid test, it will look like a female. Why? Because in the amniotic fluid test, they look only at how many and which chromosomes there are, so it will be an XX female, but one of the Xs has the SRY, and this SRY will push the unidentified gonads towards becoming testicles and the testicles will secrete testosterone and the development will be male. And this male will be infertile because all the genes for spermatogenesis that are located on the Y chromosome are missing. The only thing that Y has contributed is the SRY, and so it will be an infertile XX male. (Prof. Yoni)
The default is development toward a female fetus, that is, if something active does not happen and this active thing is something determined on the Y chromosome or the segment we call the SRY. Actually from week 10, 11, 12, it begins to secrete hormones that cause the degeneration of the female system and the development of the male system. So if something in this cascade goes wrong, like a defective Y chromosome, an absent Y chromosome, a defective SRY, a lack of receptors, or any of these things, it causes the male not to be male. On the other hand, if there is an excess of male sex hormones, as in 21 hydroxylase deficiency (46XXCAH), the system will show high male sex hormones in an embryo that is genetically female. Then it goes more in the direction of masculinization of the female sex organs. (Dr. Eli)
… biological citizenship is established and controlled by powerful institutions, notably medicine, whose rules and expectations are adhered to by active biological citizenship. These could include … in the case of the intersex community, adopting DSD nomenclature to describe intersex traits. (Davis 2015, 106)
CAH patients or carriers cannot be labelled as “third sex” … I don’t want others to point at my daughter and say “here goes one of those.” No. I have no reason to … with CAH there is no surgical option because of the fact that [the vagina] is closed … and just as you can’t eat with your mouth closed, you have to open it. (Paz)
I don’t think of myself as intersex. Before I knew the term, there was no possibility for me to think about its meaning, but even now I don’t connect well with it. So I thought she was very cheeky, that she shouldn’t use the term when she was talking to new people. It put me off and angered me. The term intersex is a gender issue and it’s a matter of choosing an identity, and I don’t feel that way. (Roni)
The connection between the categories of intersex and “genderqueer”2 made by medical professionals is an international phenomenon, and Israel is not exceptional in this regard. The refusal to use the term “intersex” is the refusal to accept bodies that undermine the dimorphic soma/gender relationship, which legitimizes medical authority and practices. Hence, many support groups that fit under the umbrella of intersex conditions reject the term “intersex” and adopt the pathologizing medical discourse (Dreger and Herndon 2009). Alyson Spurgas describes the dynamic between intersex activists who use queer discourse to challenge medical perception and treatment and intersex people who adopt the DSD medical discourse. She highlights the power relations in this field, the medical system, biotechnology, and insurance companies that benefit from DSD discourse and practices (Spurgas 2009). In Israel, the new intersex activists’ group PELE has adopted the term intersex and attempts to cooperate with the LGBT community in Israel, but most intersex people in Israel are “in the closet”—sometimes deliberately in order to maintain their privacy and sometimes because they do not want to relate to or be identified with queer discourse. In addition to the dimorphic naming and sorting of intersex bodies, I will focus next on biomedical diagnostic tools and how they aim to reduce the prevalence of intersex.
The ones who interest us in such families are the carriers … a mother gives birth to one of these and her sister now comes for a consultation. And if the sister too is a carrier, we can offer her help. These women don’t want to give birth to an infertile XY daughter. So we can offer them diagnosis during pregnancy and if the fetus is affected, they can choose to terminate. That’s legitimate. Or they can do IVF and choose embryos that don’t carry the genetic defect, the mutation. … We have options to help when we know about the genetic defect. We definitely have something to offer the coming generations.
There are terminations for all kinds of reasons. People terminate pregnancies here for strange reasons—the gender isn’t what they want or it doesn’t suit them to be pregnant at the moment, so for such a small thing [Klinefelter] they will terminate out of fear. … In Israel there are more late terminations compared to the rest of the world. Is it good? Bad? I don’t know.
Morgan Holmes is among the scholars who have addressed this issue (Holmes 2008b). She acknowledges the autonomy of pregnant women and intersex children rather than taking one side and does not advocate the termination of pregnancies of intersex fetuses, as is common practice in the discourse on disabilities. Women’s reproductive choice and bodily autonomy should play a crucial role in the decision-making regarding the future of intersex fetuses (2008b). Yael Hashiloni-Dolev, in her comparative research on genetic counsellors in Germany and Israel, discusses the high rate of pregnancy termination in Israel in general, and among many fetuses’ physical conditions, she addresses Klinefelter and Turner syndromes and other sex chromosome formations such as triple X and XYY. She explains that the reason for the high rate of termination of pregnancies of fetuses with Klinefelter and Turner syndromes in Israel has to do with the lack of fertility that accompanies these conditions because in Israel (biological) family is an extremely high cultural value (Hashiloni-Dolev 2007). This important issue should be further addressed in both intersex activism and critical sociological research. Early diagnosis and termination of pregnancies empower the biomedical control of intersex bodies and reproduce the secrecy that surrounds them.
Early (Irreversible) Surgeries and Secrecy
There is a reason that boys are ritually circumcized at age eight days and not eight years [in Judaism]. Really, it’s less painful and less psychologically traumatic. There’s less separation anxiety from the parents and everything that’s connected to it at older ages. There are many advantages to doing it at a young age, so today we recommend age six months to a year for such children.
T: I have relatives who didn’t circumcize their sons, and I debated whether or not to circumcize mine. Yes, society. No, society. The rhetoric is similar.
L: How do they cope with this on a daily basis?
T: They don’t. They don’t need to cope with it. Today, I look back and think “did I do right thing or not?” I don’t know. We were just laughing about the fact that there’s a kindergarten in the neighbourhood where most of the boys are uncircumcized, and the circumcized one is unusual, so that, too, can happen. (Mr. Tom)
These two groups, parents of uncircumcized children and parents of children with non- normative genitals, should think about creating spaces of cooperation in Israeli public discourse. Such cooperation could benefit both groups of parents and children and challenge the conventions of soma/gender dimorphism.
There is an intimate relationship between early surgeries and the concealment of intersex bodies. The various acts carried out in order to conceal intersex bodies from the public sphere and establish “normative” bodies and a heteronormative social order are connected to issues of power and subjection. Intersex people experience devastating physical and social damage as a consequence of their bodies’ concealment and of medical practices that “correct” the ambiguous threat of intersex bodies (Meoded Danon 2014, 2015). While doctor–patient confidentiality should exist formally and ethically, in this context, secrecy should not involve the intentional concealment of information from patients. The form of secrecy that exists between doctors and patients in hospitals and clinical spaces enables the reproduction of the biomedical professionals’ power and authoritative control over the body, known in Foucauldian terms as biopower (Foucault, 1973, 1990, 1995).
There are no support groups and I also wonder whether there can be, since many times I have felt that parents want so much to distance themselves from this issue that they don’t even want to define themselves as being part of this thing … In most of the families I’ve met, most of the parents have a hard time acknowledging that we’re talking about what we call intersex but then it’s not even possible to talk to them about intersex.
The secrecy and silence that surround intersex bodies are significant obstacles established by medical policy together with parents of intersex children. Secrecy and silence reproduce the biopower over intersex bodies and constitute the “soma-emotional”4 prison of intersex children and adults in Israel. How do intersex activists deal with medical authority? What changes, if any, have recently been implemented in Israeli medical policy?
Seeds of Change (?)
Among the intersex activists in Israel are four intersex adults, ethicists, academic scholars, and feminist activists who are aiming to change the medical policy on intersex children through law and public awareness. One of their most important achievements so far has been the production of the 2015 documentary on intersex people, Sharon Luzon’s Third Person. The film, the first in Israel to address intersex, sheds light on the experience of two intersex adults in Israel, the secrecy that surrounds intersex, and the problematic medical discourse and treatments. It has initiated the process of undermining the secrecy that surrounds intersex in Israel. The film was widely distributed in the country, screened at the annual Docaviv documentary film festival in 2015, and broadcast by the Yes cable company. I shared all of my knowledge on intersex people in Israel and the medical treatment practices aimed at them with the filmmakers during the time they were conducting research for the film. The intersex people who participated in the film established a Facebook group, which has many members, some intersex people and some supporters.
One of its most important statements is that a DSD condition that does not pose a danger to the patient’s life or mental or physical health does not necessarily require medical treatment, and that each case should be decided according to the specific circumstances and wishes of the patient and parents, or both. The circular does not prohibit sex assignment surgery in infancy, nor does it set a new default of non-surgery; however, it provides guidance that will hopefully give rise to informed, well thought out decision making by multiple participants. (Sudai 2017, 2)
Nonetheless, the circular makes it clear that medical authority is strongly preserved both systematically and in practice. It gives medical professionals the authority to decide how to treat intersex/DSD children and does not address the problematic and potentially devastating consequences of the treatments themselves; the multiple surgeries and the traumatic socio-somatic consequences of treatment are notably absent. It emphasizes both the sex chromosomes as the main factor that reflects the patients’ sex and gender and the existence of only two normative body types. Although this circular is relatively new and its consequences have yet to be assessed, it constitutes another minor step towards changing medical policy in Israel and advancing bodily autonomy for intersex people.
In 2017, PELE, the new group for intersex activists, was established.5 This group includes some five or six intersex activists, feminist activists, academic scholars, therapists, and ethicists. The main goals of PELE are to encourage a positive attitude towards intersex people in Israel, to change the policy of performing early irreversible surgeries on intersex babies, to increase intersex children’s bodily autonomy, and to establish support groups for parents and intersex adults. Currently, PELE focuses on producing and participating in conferences in different places in Israel and recruiting additional intersex people and parents. Using social media networks, sharing knowledge with intersex activists around the world, and raising intersex issues in different circles is the beginning of a long journey that’s purpose is to change biomedical discourse and practices in Israel.
The medical policy on intersex bodies in Israel locks intersex bodies into an authoritative, pathologizing discourse that facilitates the unquestioning cooperation of parents of intersex children with the medical system, although they may have no previous knowledge and understanding of intersex conditions and the politics that surround their treatment. Together with biotechnological diagnostic tools, this discourse controls the existence of intersex bodies and reproduces their concealment. When babies are born with non-normative genitalia and/or mixed internal sexual characteristics, they undergo early, irreversible surgeries to “normalize” their bodies, concealed behind hospital walls. These practices rob children of their right to bodily autonomy and prevent public awareness and recognition of differences of sex development.
Intersex activists in Israel are attempting to find ways to change medical policy and raise public awareness from the bottom up. The abovementioned documentary film and Facebook group are spaces that undermine secrecy and challenge biomedical authority and discourse. From the top down, the aim of the new Ministry of Health circular is to provide more information to parents of intersex children and question the necessity of surgery. These actions are historically important for intersex activism in Israel because they are departure points for change. Intersex activists in Israel and other countries must disseminate knowledge about intersex bodies and the significance of bodily autonomy for intersex individuals in the education system, medical schools, and psychology and social worker departments, which currently lack information about intersex conditions and their medical, social, and psychological complexities. This may take a long time, but the seeds of change have undoubtedly been planted.
See Malta’s law, detailed here: https://meae.gov.mt/en/Public_Consultations/MSDC/Pages/Consultations/GIGESC.aspx.
Relating to a person who identifies as gender non-binary, as both male and female, or neither.
Ritual circumcision is a very important tradition in Judaism. The ritual marks the covenant between the Jewish people and G-d and includes the removal of the foreskin, usually at the age of eight days. Some doctors who took part in my research explained that there are times that intersex babies who have male genitals and female internal organs are circumcized.
Describes the inner relations between emotions and embodied experiences, how the body expresses emotions, and how emotions are expressed in bodily manners.
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