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Medicine simply has a different approach than the social sciences. For that reason, medical-scientific research gives a limited picture of the social consequences and experiences of being intersex. Medicine also gives a distorted picture of the negative social1It is obvious that negative social consequences through social exclusion also result in negative economic consequences. Unfortunately, even less is known about the economic consequences than about the social ones. consequences of society’s non-acceptance of sex diversity, because doctors cannot report on people they no longer see2This is called “lost to follow-up”. The lost-to-follow-up rate is generally so high that outcomes of medical scientific research can rarely be generalized to the total population.
Moreover, little research has been done into the consequences of personal trauma. More research on this is necessary, because the available data from medical-scientific research is alarming. To some extent, health professionals can observe the problems, but it is not part of their job to change society. Even if they wanted to, health professionals have too little influence in society to bring about the necessary change. And even if they could, their involvement in creating and sustaining the problems is reason enough to keep a suitable distance3For many health workers it is difficult to accept that they are at least involved in creating and sustaining problems that intersex people experience in society. Although there are numerous publications that point this out and intersex activists are becoming more vocal, the views of intersex people who disagree with the treatment are still consciously or unconsciously misrepresented. This is the case, for example, in the response of Cools et al. to the report of the European Commissioner for Human Rights(Cools 2016) and a Meyer-Bahlburg priority review(Meyer-Bahlburg 2017).
Research on the social consequences of intersex
The Dutch scientific institute ‘Social and Cultural Planning Office’ has conducted exploratory research on this matter. It, too, concludes:
- that being intersex does not only have physical consequences,
- that intersex people critically evaluate who they diclose to,
- that they adapt or avoid situations so that it remains a secret that they are intersex,
- that being intersex can make relationships, self-image as a partner or shaping a desire to have children difficult,
- that there is shame and fear of unwanted responses,
- that unwanted reactions mainly come from ignorance, discomfort and lack of understanding,
- that most research participants hardly ever blame people in their social environment for this,
- and that they hardly seem to associate unwanted responses in their own environment with non-acceptance or discrimination (Van Lisdonk 2014).
This picture corresponds with the results of the study conducted by Margriet van Heesch. In that research, 42 intersex people told their life stories in interviews lasting two to six hours. Telling these stories was extremely important to participants. Some had not dared to tell their story to anyone outside the medical profession before – Van Heesch describes a situation of ‘secret stardom‘ in which the patient is treated by health professionals as someone very special and highly valued by doctors, but who does not see the same appreciation in society because of the secrecy. Nevertheless, the interviewed intersex people did not want their experiences to be lost because they hoped that others could learn from them; they wished that telling their story would turn the taboo and stigma on their form of intersex into more openness and less shame in society (Van Heesch 2015).
In the recommendations for the future, Van Heesch writes:
I hope that the six discourses that influence the stigma and taboo surrounding sex variations will be challenged. To mention: binary sex positions, reproductive imperative, heteronormativity, homophobia, coital imperative and the curable nature of intersexuality (Van Heesch 2015).
Van Heesch hits the nail on the head with this because these six discourses form an important basis for the medical treatment of non-medical problems. This is exactly what NNID wants to see reflected in a quality standard for DSD: the recognition that a significant part of the ‘medical’ care currently provided for intersex/DSD is not the responsibility of health professionals.
Although Van Heesch’s research does provide some insight into this, it is not clear what the consequences of the six discourses mentioned by Van Heesch are. For that, more research is necessary. Until that research has been conducted, research results from Australia and Europe can be looked at.
Commissioned by the European Commission, TNS Nipo interviewed 1014 Dutch people in May 2019 for a broad survey on discrimination. It was the first time that discrimination based on intersex variation was included in the Eurobarometer survey.
Strikingly, in the Netherlands it is thought that lesbian, bisexual, and gay (LBG people) are discriminated against much more than trans people and intersex people. 60 percent of Dutch people think that in their country discrimination against LBG people is widespread. For discrimination against trans people, that figure is 54 percent, while only 34 percent think discrimination against intersex people is common4The percentage of Dutch people who believe that ‘discrimination because of being a man or a woman’ is common, at 33 percent, just slightly lower than the percentage who believe that discrimination of intersex people is common. Discrimination based on being Roma, ethnicity, skin color, sexual orientation, being transgender, religion or belief, disability, being considered too old or too young, are more common in the perception of Dutch people than discrimination based on someone being intersex.
At least as striking is the fact that the answers to other questions show the opposite picture.
Especially when the ‘issue’ is closer or associated with a high social position, Dutch people appear to be less fond of LGBTI people. For example, many Dutch people think it is fine if an immediate colleague is LGB (96%), transgender (92%) or intersex (91%). For people in high elected political positions however, those percentages already drop to 93% (LGB), 85% (transgender) and 84% (intersex) respectively.5The same survey shows that 97% of Dutch people would choose to vote for a woman in a high position. Only a Roma person in the highest political position of our country is less acceptable to the Dutchman (67%) than an intersex person.. The question of whether it is okay for a child of the interviewee to enter into a relationship with an LGBTI person scored the lowest: 86% for a relationship with an LGB person, 69% for a relationship with a transgender person, and 68% for a relationship with an intersex person.
Three conclusions can be drawn from these figures:
- Intersex lags behind LGB in acceptance by about 5 to 18 percentage points. Transgender acceptance is only marginally better.
- Acceptance is actually inverse to expected discrimination: despite people thinking LGB discrimination is significantly more common than intersex and transgender discrimination, they are more likely to say someone being intersex and transgender is unacceptable.
- That acceptance seems easier when the ‘issue’ is more distant may be an indication that socially desirable answers have been given: acceptance seems primarily driven by changing social norms and values, rather than by intrinsic acceptance of LGBTI.
Percentage of Dutch people that thinks that in the Netherlands
people are often discriminated
…their sexual orientation
…them being transgender
…them being intersex
Percentage of Dutch people that indicate they would be
…a direct colleague being…
…an LGB person
…a transgender person
…an intersex person
…the highest political office being held by…
… an LGB person
… a transgender person
… an intersex person
…having one of their children have a relationship with…
…an LGB person
…a transgender person
…an intersex person
Source: Special Eurobarometer 493 – “Discrimination in the European Union” Fieldwork: May 2019
Percentage of Dutch people that says that in The Netherlands
discrimination mostly occurs
…sexual orientation: 60%
…being transgender: 54%
…being intersex: 34%
Percentage Nederlanders dat zegt dat zij het geen probleem vinden als een directe collega bekend staat als een…
…transgender persoon: 92%
…intersekse persoon: 91%
Percentage Nederlanders dat zegt dat zij het geen probleem vinden als de hoogste politieke positie bekleed wordt door een…
…transgender persoon: 85%
…intersekse persoon: 84%
Percentage Nederlanders dat zegt dat zij het geen probleem vinden als een van hun kinderen een relatie heeft met een…
…transgender persoon: 69%
…intersekse persoon: 68%
Bron: Special Eurobarometer 493 – “Discrimination in the European Union” Fieldwork: May 2019
Research into the experiences of intersex people in Australia (Jones 2016) has shown, among other things, that 18 percent of respondents only completed primary education (as opposed to 2 percent for the total population). That percentage is also higher than the percentage of transgender people that did not complete secondary education.
Concerning this, the researchers state:
Given that by law Australian young people are required to stay in schools until 15-17 years of age (depending on state and territory laws), this educational disruption suggested that there have been difficulties for people with intersex variations either in school contexts themselves, and/or in relation to their general experiences at schooling age, in ways which affected schooling success and meant they dropped out of/left schools without being able to take advantage of the full qualifications available to them there, and increasingly necessary for opening up job opportunities in modern times.
What stands out is that intersex people actually perform better than average in higher education.
The income of intersex people also lags behind severely compared to the national average. At the time of the survey, the average income in Australia was over 80,000 Australian dollars a year. In contrast, 63 percent of the respondents in Jones et al. earned less than 41,000 Australian dollars a year. Forty-one percent even earned less than 20,000 Australian dollars a year.
The percentage of intersex people who were unemployed but looking for work, at 12 percent, was also higher than the Australian national average. It is in the middle of the estimates of the percentage of unemployed transgender people, which are between 9 and 15 percent.
Although medical treatment with regard to sex diversity in Australia does not differ significantly from that in the Netherlands, the distance from people’s homes to specialized medical facilities could be a factor. Australian intersex people who participated in the survey could have different experiences than people in Europe due to this fact. This is why comparable research in Europe, with respondents who are not necessarily from a medicalized environment, is a good idea.
Recent research among intersex people who are known to DSD treatment centers has shown that 3.8 times as many respondents have attempted suicide in comparison to the control group. Because a significant number of respondents did not answer this particular question, the real percentage is thought to be even higher. The number of intersex people with mental health problems was found to be 4.3 timers higher than the number of people in the control group (Falhammar 2018).
It is unknown whether the mental health issues and the high percentage of suicide attemps are symptoms of the DSD diagnosis. The fact is that these percentages are also very high6 The WHO definition of child sexual abuse is: “Child sexual abuse is the involvement of a child in sexual activity that he or she does not fully comprehend, is unable to give informed consent to, or for which the child is not developmentally prepared and cannot give consent, or that violates the laws or social taboos of society. Child sexual abuse is evidenced by this activity between a child and an adult or another child who by age or development is in a relationship of responsibility, trust or power, the activity being intended to gratify or satisfy the needs of the other person.”(Wells 2003) among children who have suffered sexual abuse(Browne 1986, Cook 2005, Fergusson 1996). Not only that, but certain treatments and examinations (including a test that is described as ‘clitoral sensory testing and vibratory sensory testing’ (Yang 2007) can be considered sexual abuse (Alexander 1997, Dreger 2015, Jones 2016, Knight 2017, Wiesemann 2010). Moreover, researchers and authorities consider the medical treatment that one group of intersex children undergo to be comparable to female genital mutilation 7The UN definition of female genital mutilation is: “The term ‘female genital mutilation’ (also called ‘female genital cutting’ and ‘female genital mutilation/cutting’) refers to all procedures involving partial or total removal of the external female genitalia or other injury to the female genital organs for non-medical reasons.”(WHO 2008). (VGV) (Dreger 1998, Earp 2018, Ehrenreich 2005, Fraser 2016, GFMK 2014, Green 2005, OHCHR 2015, Pūras 2016). A growing percentage of intersex people also experienced the medical attention they received as (sexual) abuse (Blair 2015, Frader 2015, Meoded Danon 2018, Monro 2017, Viloria 2017). These facts make it likely that the medical attention is the cause of the mental health issues, not the intersex diagnosis in and of itself.
Other social consequences
It is often assumed that there is little to no data about the social consequences of living with an intersex variation. Although it is certainly true that not enough social scientific research has been done, medical and scientific publications can contain information that gives an impression of the social consequences of having an intersex variation or having undergone medical treatment. Unfortunately that information is rarely considered to be important in research. The results are often collected as part of more broad or general medical research.
Medical journals do not generally comment on possible causes. However, there is no scientific proof that stopping education early, not being able to find a partner, or thoughts of suicide are symptoms of sex diversity. Social exclusion remains the most obvious possible cause.