Researching intersex and trans people’s medical experiences
Michelle O’Brien BA Hons, DMA, MSc, HTC
Roehampton University, School of Business & Social Science
Up to the time of Magnus Hirschfeld (Hirschfeld, 1910/1991, Hirschfeld, 1914 /1991, Hirschfeld, 1923) the study of homosexuality, trans and intersex were located together, so I set out by looking at these three phenomena. I then focus on the two groups I am looking at in my research (intersex and trans people). I conclude by covering some of the work covered and issues raised in my research so far.
After 150 years of research, the reasons for sexual and gender diversity are not fully understood. The social and biological aspects are not clearly defined for any group. Intersex is a biological phenomenon, but for trans, what is and is not intersex is defined by people.
For religious leaders, a biological cause of homosexuality and transsexuality is inconvenient as it undermines ideas about sin and choice. For the National Socialists biology was convenient. The views of some contemporary African leaders & Bishops on homosexuality echo those in Germany in the 1930’s. These three phenomena occur globally and throughout history, but are not always acknowledged or tolerated globally.
To ask if homosexuality or transsexuality has some genetic or biological basis, or how it can continue to exist in evolutionary terms, is problematic: that is a political stance that assumes homosexuality is deviant, and thus needs explaining/justifying. When we discuss nature vs. nurture, we do not ask whether heterosexuality and the gender binary are produced this way – because they are assumed to be normal.
Wherever we live or come from, problems about these issues are often problems of language: science itself is often guided by the bias of the investigator, as are the interpretation of the findings, and implementation of policy that arises from it.
Transsexuality is the name given to the experience of cross-gender identification leading to adult sex-reassignment. The medical terms for the cause of this are Gender Dysphoria and Gender Identity Disorder. Some object to the term transsexual, stemming from the history of pathologising people. Where appropriate, I retain the term, but where possible I just use the term ‘trans’.
Intersex is the generic name given to a set of conditions formerly known as hermaphroditism (true and pseudo). The use of the term hermaphrodite has been discarded by both the medical profession and individuals themsleves. Activists and members of the community have also spoken out to reject the term ‘intersexuality’.
The argument is that these conditions are not a form of sexuality, nor related directly to transsexuality.
Some trans people emphasise the relation between transsexuality and gender, as opposed to sex. Some intersex people emphasise the relation between intersex and assigned sex, as opposed to gender.
Heteronormativity describes the heterosexual binary gender system, which is seen as ‘normal’. This in itself is problematic, because it implies that other identities are in some way ‘abnormal’. It is the dominant form of sexuality/gender expression. That dominance entails that the others are ‘subordinate’. Notions of normality and dominance lead to discrimination and injustice
Homosexuality is same-sex sexual orientation (gay or lesbian), and usually entails having a male/female identitification corresponding to phenotype.
‘Transsexuality’ is used to describe a cross-sexed gender role/identity (body/mind mismatch). The phenotype is contrary to the individual’s identification. Surgical Reassignment elected as adult is seen as the goal of the transsexual person. Such people often identify as straight (heterosexual) or gay (homosexual).
Transgender I take as similar to transsexuality, but usually without reassignment surgery, and often involving hormones.
Androgyny/Gynandry: Where people identify as neither male nor female. Androgynes were traditionally feminine males, and Gynands masculine women (Krafft-Ebing, 1886/1996). Today androgynous is used as a term to describe people who appear between the sexes.
Intersex I take as when sex-defining characteristics and/or markers (genetic, chromosomal, hormonal, gonadal, genital, secondary sexual) are ambiguous, usually from birth. Some infants and children with genital ambiguities will have experienced genital surgery to enable them to conform to their assigned gender.
Until the early 1960’s gender reinforcement could be towards male or female, depending on what sex genital and gonadal structures most closely resembled (“true sex policy”); this included masculinising surgery and other treatments. From the 1960’s such surgery became increasingly focussed on performing surgery to conform to overall appearance (“best fit policy”); this was often feminising surgery and other processes (Cohen-Kettenis, 2004). In recent years significant numbers of such people have expressed dissatisfaction with the results of such surgery and treatment; as a result a more cautious approach is now considered more appropriate in the UK.
A small percentage of intersex people have some degree of cross-gender identification from infancy onwards. Very few of such people may seek reassignment from male to female, female to male, (Zucker, 2002) or have other such issues. Many intersex people experience lifelong physical medical conditions associated with their underlying pathology – salt loss, osteoporosis, infertility, genital pain and insensitivity, sexual dysfunction; kidneys, thyroid, parathyroid and adrenal glands can also be affected.
Intersex people usually identify as heterosexual, but may identify as lesbian, gay or transsexed.
Transgendered people have existed from the earliest times, and feature in classical cultures: ‘Self-made eunuch emerges from Roman grave’(Wainwright, 2002). In modern times they have been recorded in places such as in India (Agrawal, 1997, Nanda, 1999, Singh, 2001) and among Native North American tribes (Epple, 1998, Roscoe, 1998, Williams, 1986).
As with homosexuals, attempts to pursue rights have met a backlash from the religious right in Europe and America: ‘New gender recognition law challenged as ‘highly dangerous’’ (Parakleo, 2004).
Some feminists critique transsexual medical interventions (Jeffries, 2003, Raymond, 1979). Their arguments stem from a belief that it is our society’s gender stereotyping which causes gender dysphoria and results in radical surgery to change sex.
An Amnesty International report in 2000 highlighted that many people around the world are tortured, imprisoned and killed because of their sexuality or gender identity.
Such minorities are often not tolerated in much of North and South America, the Middle East, Africa and parts of Europe. People are targeted for simply being who they are – and this is sometimes sanctioned by the state.
Figures are hard to establish, and for comparison I err on the side of caution, between the most conservative and generous).
Homosexuality: estimated rates are between 3 and 10% of society – I work on a figure of 5%.
Transsexuality: I have chosen a middle figure between the official figures based on estimates in the USA and the incidence of Hijra in India, I work on a figure of 0.05%. Harry Benjamin himself considered the incidence of genital anomaly amongst the transsexual people he treated as 40% (Benjamin, 1966).
Intersex: There is a one hundred fold difference between the estimates of Sax & Fausto-Sterling (Fausto-Sterling, 2000, Sax, 2002). The latter figure is more in line with Skakkebaek’s estimates of genital anomaly in the newborn in Western Europe and North America (Skakkebæk et al., 2001) at around 5%. I take a more cautious working figure of 0.5% for actual incidence of intersex in the UK population.
I am interested in three groups of people in my study:
People who appear to be both
I look at these in their relation to the heterosexual, lesbian and gay communities
Location of Communities and Pathologies
In medical history three groups have been lumped together, studied by the same experts, are linked in the popular understanding (fed by the media) and are sometimes included within community umbrella organisations. I have developed the following four diagrams to map out four different ways of looking at these three groups:
Lesbian, gay and queer identified people (historically pathologised as homosexuals)
Intersex people (historically pathologised as hermaphrodites)
TS is a form of IS:
LGBTQI… Alphabet Soup:
These are intended as short-hand to describe the political and historical medical locations and inter-relationships between these groupings.
Location of information
Dave King (1993) covered the history and development of treatment in the UK for both groups, and went on to examine four locations to look at how to understand people who were transsexual or transvestite:
Narratives of people themselves
Medical scientists, practitioners & other academics
Discussions within the communities themselves
Locations to examine since the publication of King’s work are debates within and between communities, arising out of increased activism and politicisation. Since 1993, web-sites, support lists and pressure groups working through the internet have come into existence. The internet has had a huge impact on the information available to intersex and transsexual people.
I have reviewed historical, scientific, medical, policy sociological and psychological literature, archived narratives, media, and autobiographies.
I had intended to add to Dave King’s work by presenting an analysis of media coverage over the past ten years. This was to specifically focus on the relation between medical and scientific theory, certain feminist and Christian critiques, and social theory. The extent of reportage on transsexuality over the past ten years has increased substantially year-on-year (at least a thousand hits in the last year alone. Coverage of intersex is relatively recent, mostly the past two or three years, and is a fraction of that devoted to transsexuality (a ratio of about 100:1).
This wealth of material meant that I was unable to process the information for the analysis I had intended to present, as that was to involve a trawl of the newspaper archive, and sort through the relevant pieces on medical issues. The major point of discussion has been on the validity of NHS funding for sex reassignment surgery, and funding treatment for transsexual people in custody.
Transsexuality is now well established; reportage about celebrities, criminals, gangsters, paedophiles and clergy who seek reassignment tends to draw more attention than others. From some reports you could get the impression that you are more likely to be murdered by a transsexual person than for a transsexual person to be murdered. Nadia from Big Brother has overwhelmingly eclipsed other celebrity/notorious transsexual people of recent years: Miriam, Dana International and Diane Parry.
Russell Reid, a private Consultant Psychiatrist working in London, does seem to appear more frequently in the press than the entire team at Charing Cross GIC, and has spoken out more on behalf of trans people than any other professional working in the area. He seems to have courted controversy not only in this area of medicine, but in the treatment of sex-offenders using chemical castration. I found one report where Richard Green seems to defend a surgeon fond of amputating healthy limbs, using the success of this technique with transsexuals as a defence. I did, sadly, find out about two of Russell Reid’s patients who had committed suicide; it raises a question, given how his name was mentioned in those two cases, where the other suicides I came across were being treated. The numbers of such reports were still few overall.
In looking at Christian and feminist responses to transsexuality, I was interested in an article published by Julie Bindel in the Sunday Telegraph (Bindell, 2003). Bindel has also been outspoken in the Guardian (Bindell, 2004), while filling in for her colleague, Julie Birchill. Following from academics such as Janice Raymond (Raymond, 1979), and more recently Sheila Jeffries (Jeffries, 2003), Julie Bindel has critiqued sex-reassignment. Another Guardian colleague, David Batty (Batty, 2004), has more recently taken up the debate, focussing more closely on Dr. Reid.
The reason for my interest was that I became aware of Bindel’s article on a Charismatic Christian website, Parakleo Ministries. Whilst understanding the puritanical roots of both Evangelical Christian and feminist roots, it puzzled me that they were using an article by someone such as Bindel in their ministry to transsexuality. Parakleo is a more extreme form of the ideology found in the Evangelical Alliance’s recent report called “Transsexuality” (Evangelical Alliance, 2000). Parakleo’s work seems to echo the ministries in the USA to homosexual people, recently highlighted as a result of Spitzer’s paper on Christian re-orientation therapy (Spitzer, 2003).
My analysis is incomplete as I give this paper, but the point of meeting between these two groups appears to be that in order to undermine the justification of current treatment for transsexual people, they posit that the phenomenon is either a psychological delusion, or socio-medical construction. What is interesting is that one person called Claudia crops up in the original Bindel article, and there is a link to a web-site which encourages transsexual people to revert to their former gender role, which also features in the in the Batty coverage. Somehow, between two people and one web-site, one person’s story can be developed along with one or two other’s into what appears to be a campaign.
This undermining of the medical basis of transsexualism can be seen in the academy as well. Where Gooren and others produce evidence of sexed brains (Gooren et al., 2000), and Skakkebaek under EU funded research shows the likelihood of foetal endocrine disruption in the West (AcMedSci, 2003), we have feminists dismissing such science (Roberts, 2003). The critique of science is not based on the findings, but on the scientific agenda and assumptions. The Soviet Union approached wheat production based on social theories rather than the selective genetics which developed out of Mendel’s work, with disastrous results.
For over 50 years people have tried alternatives to reassignment, and we never hear of any success stories. Yet of those who do opt for reassignment, we still hear of only a few failures, despite the negative publicity of journalists and academics who appear to be partial to the idea of re-socialising people.
My method of carrying out first stage interviews was initially unstructured and informal, to allow the participant’s own story to emerge. Many were carried out on the telephone. The duration of each interview was 30 to 60 minutes.
Through this process I developed a list of guiding questions which were used to help get people started in developing their own story. These could be used as prompts when conversation flagged, and were reflexively developed during interview process. These resulted in a four page set of questions.
To date sufficient data has been collected through the first stage interviews, but the analysis has yet to begin. Further questions may arise which necessitate more focussed second stage interviews. Until the thesis is published, I am unable to disclose any findings. The effects of medical interventions have been discussed.
Lesbian and Gay Archives
I studied the Hall Carpenter Archives in the British Library. These revealed a high level of cross gender identification in the lesbian and gay community – about 10% of people in 100 interviews listened to (male and female). There was frequent experience of social isolation and bullying.
The Creation of Pathologies.
When discussing the socio-medical construction of such “conditions”, I would question whether these “conditions” are created by medical practitioners (Billings and Urban, 1996). An example of this goes right back to Carl Westphal, where he is looking at a phenomenon and seeking to describe and “treat” it (Uimonen, 2003, Westphal, 1869). He was dealing with two individuals who had a severe degree of cross-gender identification, and for whom this was causing some distress. These became models for the stereotype of the feminine gay man and the masculine lesbian. However, he himself is clear that homosexual behaviour is not pathological – but that these were two individuals whose “contrary sexual feeling” was pathological. In fact, their pathology seems as close to that of the later transgendered person than the true homosexual.
Similarly, at HBIGDA in Ghent in 20032, there was some discussion about the separation of transgender from transsexual pathologies, because it was becoming clear a separate Standard of Care (SOC) was necessary. Transgendered people do not want surgery, so a SOC which assumes that as the treatment end-point was inappropriate. This issue was raised because of clinical observations. In that people require some form of treatment, the creation of the pathology appears driven for people’s own need for some form of treatment, rather than engineered by the medical profession. This is an echo of Harry Benjamin’s own work.
The pathology may be created, but as a reflection of the phenomena, rather than a creation of the phenomena itself (as has been suggested). Given the physical nature of some of the intersex conditions, the same is as clear for these as it is for other physical conditions.
Much of the linguistic problem in dealing with these issues are the proliferation of dualisms, a post-pagan, Judaeo-Christian phenomenon (good/evil) re-enforced by Descartes’ man in the machine (body/mind). Cartesian Dualism and gender were first dealt with by Tamsin Wilton (Paechter, 2003, Wilton, 2000). Beyond the binary gender system (male/female – masculine/feminine), we have neurology/psychology, normal/abnormal (deviance), sick/healthy, straight/gay (heterosexual/homosexual).
I personally have found Queer Theory immensely useful in dealing with these issues, and in some ways quite liberating. This has led me into Crip Theory, a critical form of disability studies. Queer Theory has a lot to speak to both intersex and trans issues, without necessarily subsuming them. There is clearly a link between intersex and disability studies, and so Crip Theory has something to teach us in thinking about both intersex and trans experience.
It has been asked whether the current interest in intersex is because some trans people have difficulty accepting themselves as such. Very few intersex people can be categorised as transsexual – most maintain identification with the sex of assignment and rearing. At Lübeck3 recently, Ken Zucker and Peggy Cohen-Kettenis spoke about research which showed that about 7% of intersex people with ambiguity assigned a sex in infancy went on to change gender role as adults. This is higher than the general population, but is still quite a low incidence. Some would question whether an intersex person can be transsexual, when there has been some question about assignment and some level of ambiguity.
Being intersex is not a choice, nobody wakes up and thinks “today I am going to be an intersex”. I don’t mean by that that others have much choice in the way they are either. It is either a lifelong awareness, or an awareness which emerges in adulthood like pieces of a jigsaw which fall together. Being intersex is often a visible, tangible, biological reality, denoted by genes, chromosomes, hormones, childhood surgeries and interventions, genital/gonadal ambiguity. There is some objective experiential fact behind the statement “I have this history”.
I resist the current trend of trying to blur the lines between these phenomena. Intersex people are often accompanied by life-long medical problems. These problems have been overlooked by assuming some adults are simply ‘transsexual’, and huge psychological discomfort has been caused by trying to fit people into an inappropriate pathology.
Freud described somatic and psychic hermaphrodites, the former being intersex people, the latter bisexuals (Freud, 1977). These developing models of gender and sexuality borrowed from the investigation of the hermaphrodite of those times. Edward Carpenter follows Krafft-Ebing in listing psychic hermaphroditism as one of the categories of homosexual (Carpenter, 1912/1999, Krafft-Ebing, 1886/1996). Ellis speaks of one of his patients with cross-gender identification, in a footnote, as having inborn and acquired psychic hermaphroditism. He does not elaborate on his use of the term (Ellis, 1906/1937, p8).
Looking back to Hirschfeld’s works, which are becoming increasingly available in translation after over 80 years, they read with surprising freshness. His theory of sexual intermediaries was a development of the distinction between psychic and somatic hermaphrodite, but breaking down the categories to an almost individual level.
This distinction between transsexed and intersex groups could be maintained by going back and updating those earlier ideas, and maintained for the two groups in question: physical and neurological intersex conditions. That way the reality of having overlapping conditions can be accounted for, and the health needs of both communities could begin to be addressed properly.
1 I do not claim to speak on behalf of either the trans or intersex community or people, but from my own experience, discussions with people positioned within or outside each community, and as an academic researching these issues. Information and ideas have been developed through online discourse, one-to-one discussion outside formal interviews, medical and community conferences, activist and community group web-pages, the media, and a range of cross-discipline historical and academic papers as well as popular literature.
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