26/02/2022 | Writer: Koray Başar
Lately, an approach become widespread in medical practice that focuses on the intersex individual and their rights rather than the concerns of binary medicine or the family. In this approach, it is supported that the person participates in the decisions about themself as much as possible.
Gender development is a multi-stage process that allows for wide diversity. Numerous factors regulating the differentiation of body structures from a common source in an individual way, cause in such a wide variety when playing a role both before and after birth. When gender is considered as a concept with a single equivalent, a structure with only one dimension and only related to reproduction, the gender of the person at birth is determined by looking at the reproductive organs. The gender of the person is also defined in the male/female dichotomy that will end up in reproduction. This gender is documented legally, the parent is told "this is your child's gender”. Even with this approach, the reproductive organs are not the only structure of the body associated with gender. With the discharged hormones with puberty, secondary physical features are acquired. Gender is evaluated in binary groups and according to the differences, some physical characteristics are said to be specific to men and some to women. However, neither the reproductive organs nor the physical features that developed during puberty fit this dichotomy accurately. On the contrary, all these characteristics show wide variation among individuals. Moreover, any physical feature associated with gender is not an absolute determinant for other physical characteristics. For example, while a person's body hair is associated with one gender, their voice may develop in the direction associated with another gender; reproductive organs may not develop in the direction of the expected gender by looking at the chromosomes of a person. Therefore, it is possible to follow the traces of diversity related to gender development in every body.
Despite this diversity in the gender related characteristics of the body and evolve together in the individual, when the bodily features associated with the gender of the person at birth do not fully comply with one of the male/female binary regarded as a rule by medicine, traditional medicine considers this as a problem. In the past, the term "hermaphrodite" was used in medicine for people in this condition, which has been used since ancient times. In the past two decades, the term hermaphrodite has been replaced by the diagnosis of "gender development disorder”. Although this is the diagnosis used in the records and research, it is not preferred because it matches the condition with the disease. Unfortunately, this category was preserved in the diagnostic classification system (ICD 11) of the World Health Organization, which will become valid in the coming days. “Intersex”, which is the definition that these people often prefer for themselves, is widely used; besides, care is taken to emphasize diversity in gender development.
Although we have much more information about the development of physical characteristics associated with gender compared to the past, not every step of this process and every factor that plays a role has been determined. Sometimes when there is difficulty in determining the sex at birth, sometimes later in life when it is understood that the physical characteristics do not show consistency in one gender, this situation comes to light. Differences experienced in some steps of the development process of gender-related characteristics may have important health-related consequences beyond gender assignment, and sometimes intervention is required. However, in terms of physical characteristics, it is not right to label all kinds of deviations as "disease" or "disorder" towards the gender binary at birth or later. What it means to accept being intersex as a disorder is that it is a fundamental gender-related disorder. However, it doesn't have to be like that. There are many intersex conditions associated with dozens of different causes. When all these gender-related features do not fit into one of the two categories, this may not cause distress in the individual or social life and may not affect functionality in the areas they care. The acceptance of all intersex conditions as disorders is related to the presupposition that these features are not only related to the body, but also related to the personal, social senses of gender, sexuality, and that the mental structure and social functions of the person related to these are or will be impaired. Yet, we now know that it is not physical characteristics that determine gender identity, gender expression and sexual orientation. Moreover, where gender stands in diversity regarding any physical aspect does not determine other elements of a person's mental structure.
Considering all gender-related characteristics in binary, even if it is not a disorder, intersexes are exposed to stigmatization and discrimination in society, due to acceptance of the person as a totally contrarian when deviating from duality in any respect. Stigma and discrimination can start at a very young age, sometimes when the person is unaware of the situation. This stigma can be interiorized by realising that the person is different from what they see in their close circle and from the expectations of their environment and family, as in all groups exposed to discrimination related to sexual identity. In particular, when others with similar experiences cannot be contacted, when there isn’t enough information about the situation, negative judgments that are interiorized and adopted internalized can negatively affect a person's self-worth and many mental characteristics. The discrimination made feel in bilateral relations intensely sometimes by family and sometimes by healthcare professionals. In different social contexts in adolescence and adulthood, intersexes are in a worse position than other sexual identity groups in terms of discrimination, verbal and physical violence in the social environment and bilateral relations. It can be stated that the effects of this chronic stigma and discrimination related to identity on health, go beyond physical characteristics in many cases. Therefore, health professionals serving intersexes of all ages and their families should take into account the possible effects of stigma and aim to strengthen the person and family in the face of discrimination and its effects.
What did medicine used to do, what does it do now?
It is not possible to talk about a single medical approach because the medical conditions associated with being intersex are so diverse. However, the general principles of medical approach to intersex situations have changed significantly over time. But the approach that we still see its marks, medicine which adopted the gender binary approach, accepts all other physical features as a problem and tries to adapt them to the duality. With surgical interventions and hormone treatments, it is possible to gain a gender-appropriate structure, perhaps function. Traditionally, it has been assumed that implementing these initiatives as early as possible serves the individual's well-being. The rush to intervene was influenced by the old assumptions about sexual identity development -the illusion that physical characteristics and family raising are the main determinants on the assignment and development of a person's gender identity, expression and sexual orientation- which are no longer valid. Especially in interventions made in the early stages of life, the insistence of the family, who is mentally challenged due to uncertainty and clearly experiencing a crisis, may also have an effect.
A major problem with such early interventions is that the person, and in many cases family members, is not adequately informed about the medical condition, treatment options and outcomes, and in most cases, the person's approval is not received. Unfortunately, in most cases, families are also asked to hide information about their children from their children, or the family's request is in this direction. Over the years, it has been seen that the "corrective" approach does not serve the expected purpose, that the difficulties experienced by people with a certain gender determination and upbringing in that direction, whether with surgery or hormone treatments, do not disappear. Moreover, these series of interventions which often done early in life, can have severe traumatizing effects. The message that they should be corrected even if the actions taken are not wrong, the insistence that they should keep this situation confidential, and the unanimous agreement of the family and doctors that they will not be accepted by others if they learn what they have experienced, do not develop resistance against stigma and discrimination, but on the contrary, reinforce the person's internalization of these. Some procedures performed to fit physical features to gender structurally may also have negative effects on sexual pleasure and arousal in the future.
Recently, an approach that focuses on the intersex individual and their rights rather than the concerns of binary medicine or the family has become widespread in medical practice. In this approach, it is supported that the person participates in the decisions about themself as much as possible. In many countries, in many centers when there is no vital necessity, the deferment of irreversible medical procedures to the ages where people can be involved in decision processes is related to this. Although it is not an approach that has become sufficiently widespread and standardized in our country, this approach has been adopted in the Ethics Declarations of the Turkish Medical Association. The current approach does not exclude medically urgent and vital interventions, nor does not prevent gender assignment in the early stages of life. For this, information from an increasing number of follow-up studies is used on which gender identity develops in which intersex situations. However, contrary to what was assumed in the past, it is accepted that the assigned gender and gender identity may not match, which is seen at a higher rate among intersexes than in the general population.
It is known that there are many people who have been followed up with the previous medical approach and have been subjected to intervention. It is very difficult for this group, whose
physical, mental, sexual and social problems have been revealed by research, to access the health services they need. Studies show that it is common to be exposed to discrimination in the field of health when they apply for other reasons. This may affect the help-seeking behavior of individuals negatively. Moreover, they may stay away from institutional medicine because of what they have suffered. As a result, it is difficult to say that healthcare professionals are familiar with the support needs of this group and are competent to provide appropriate support.
Although the change in the approach to intersex situations is positive, it will be an important deficiency that medical support is limited to diagnosis and medical interventions. Because both the person and the family need very serious psychosocial support, the continuity of this support and its systematic presentation. An extensive care plan should be made beyond diagnosis, cause-related investigations and necessary medical support in the health institutions they interact with from the beginning. This plan should be continued in such a way that both the family and the person are informed at every stage and included in the decision processes. Although it is clear that early interventions do not show the expected effect, it does not seem possible or sufficient to prevent them without providing comprehensive psychosocial support.
Lifelong mental support: The person and their family
Regardless of the period when the person was discovered to be intersex, there are some points to consider when meeting with both the person and the parent. First of all, it is necessary to “normalize” this situation. At the diagnosis stage, the person and his family may perceive the experience as a situation that only happens to themselves, which is almost incompatible with being human, and which they could not imagine before. It should be noted that the prevalence in the community was reported to be 1.7% in recent reviews. It should be emphasized that they are not in a situation which only happens to them, which health professionals do not know what to do, they will receive support in this regard, won’t be alone, and there are experienced health centers.
It is important to listen intently and carefully and to determine specific areas that concerned. It would be appropriate to focus on those who occupy the mind of the person and their worries, not the health worker, and try to help. At this stage, it is important to explain the medical information to be shared in a clear and understandable way, avoiding professional jargon, and to clarify why each examination is done. In a situation where such intense anxiety is experienced, repetition should be adopted as a rule in these interviews and briefings, keeping in mind that unfamiliar information is not easily digested.
It is important to emphasize that the variation displayed by gender development is usual. In any case, in-group variability, multidimensionality, and complexity, particularly individuality, need to be underlined repeatedly. It matters to explain the gender-related characteristics of the body and gender beyond binary systems. It would be appropriate to take care that the language used is sensitive and respectful, for example, it would be convenient to say 'condition' instead of disorder or disease. Emphasizing the usual diversity of sexual identity and that they develop independently of physical characteristics, can appease self-anxieties and parental concerns about how development will continue.
The family requires serious support, especially when it is discovered early in life that the person is intersex (often when gender determination is difficult). The intense anxiety experienced especially in the first period is related to uncertainty. They may feel helpless about understanding the situation, learning what can be done, and powerless about what and how much to tell their close and distant circles. Sometimes families may insist on physicians for medical interventions thinkingly that this crisis situation will calm down, and sometimes doctors may think that the crisis will settle in this way. However, there are studies showing that this anxiety, distress is not relieved by medical procedures. Therefore, although this is difficult, health professionals must be able to provide psychosocial support that will allow them to manage the initial reaction of the family.
The first period of intersex families, parents and others experienced is similar to the experiences of relatives of other sexual identity groups (LGBT+) who have been discriminated against regarding gender identity, expression and sexual orientation after coming out. However, most intersex individuals are either too young to speak or are not in a position to give information about what they are going through. Therefore, acknowledging the situation may require a more intense and repetitive effort than other families. Families may often think that their approach and upbringing can shape a person's specifications about sexual identity. This can cause anxious waiting, as well as artificial attitudes, improper feelings of guilt and inadequacy that can disrupt the relationship with the child in the long run. In fact, sexual identity is not shaped by upbringing and observation. It should be aimed to make the family open to diversity related to the physical and spiritual development of gender, standing next to the child in a way that will act with them and protect them, not in front of them. Without providing this, it is not applicable, realistic options to expect that the gender to be raised will not be assigned, and to suggest that raising the child without gender. Being able to contact parents with similar experience can be very effective; it would be appropriate for health professionals to mediate this.
There is no mental benefit in hiding information about the situation that the person is experiencing from themself. What needs to be done is to give information in accordance with their age, developmental period and curiosity. It is important to support the family in this regard. Knowing the diversity of sexual identity and understanding that they are not superior or advantageous to each other allows both the family and the person to maintain a healthier development, and to express one's authentic self more painlessly. It will be mentally and socially empowering to support the development of cognitive coping skills in order to address and question intersex stereotypes, both for the person and the family.
Supporting and providing contact with support groups or people in similar situations is also important for intersexes. To interact face-to-face although it is not easy, directing them to national and international intersex groups, organizations, information resources, and suggesting publications prepared by LGBTI+ and family organizations on this subject can give very empowering results. Support should be provided for the sharing of information, feelings, experiences and the development of mutual support between the child and the parent. Beyond the support of family and peers with similar difficulties, it is very facilitating to develop narratives that can be adapted to different contexts so that they can appropriately convey this information about themself when they wants to share it. Support should also be provided to the family on how to share the intersex situation. When both the person and their family need to hide this situation even from their closest relatives, they are left alone and cannot use the usual social support systems.
The ultimate goal of medical support should be to bring physical and gender characteristics that are compatible with one's self. Both common social judgments and institutional medicine can foster an expectation of a monotype human that does not correspond to the diversity exhibited by people. These ideal features imposed on people in the name of physical integrity pave the way for unrealistic evaluations that cause not only intersexes but all people to compare themselves, to feel inadequate or excessive. It is necessary to provide a suitable environment and to wait for adequate maturation so that the person can discover and express the characteristics compatible with themself, not what the doctor, family or society expects. It should be provided that the person can discover what is the state in which they can experience physical, mental and social well-being, can explore as independent as possible from the expectations and judgments of others, and can have access to the possible support to have the characteristics that they feel comfortable with. These preferences of a person about themself are not characteristics that should remain constant throughout their life. When it comes to attempts to acquire these characteristics, they should be guided by the will of the person, not the doctor, not the judge. For this, it is necessary to wait for the person to reach the mental maturity that can be included in the decision processes, especially for irreversible transactions. This age limit does not always mean being of legal age for every process. Mental health professionals have the competence to evaluate this mental maturity at different stages of progress. It needs to be clearly communicated by presenting vital, functional or elective options, with the possible risks and benefits of all medical procedures, to both the person and the family.
It is not absolutely possible to predict gender identity from an early-life assessment. It is known that neither medical signs nor early mental evaluation will give absolute results. The difficulty experienced when the gender identity doesn’t match the gender assigned at birth or after the medical evaluation and process, is called gender dysphoria or gender incompatibility. Similar to trans people, psychological support related to gender dysphoria and medical support regarding gender confirmation process should be provided at every stage of life.
Processes related to intersexes are frequently carried out in advanced level health institutions where there is more than one medical specialty. In these centers, psychiatrists and psychologists are often consulted in cases requiring gender reassignment or during the decision-making process regarding surgical procedures. So indeed, the individual and the family need expert support during the decision-making process regarding medical interventions. However, the need for long-term mental support for intersexes and their families into adulthood is clear. Studies conducted in large groups report that psychiatric disorders related to certain characteristics, especially anxiety and affective disorders, are detected at a higher rate in adult intersexes than in the general population. While certain intersex conditions may be at greater risk, there are also differences in terms of age periods. In particular, the incompatibility of assigned gender causes the most significant increase in risk. Mental disorder is often associated with low self-esteem, shame, physical dysphoria, and dissatisfaction with medical support. All these findings indicates the necessity of lifelong preventive and remedial mental support. This support can strengthen the person and family against stigma, guide about communication and increase mental resilience.
Being intersex is not uncommon. It is also not uncommon to have physical characteristics associated with different genders together. Being intersex refers to a part of the gender development process that varies widely in all people. The fact that being in this group is seen as a problem is due to the fact that it does not comply with the expectation of binary gender. In fact, in most cases, non-conformity of the body to the binary gender does not make the person sick; however, stigma and discrimination make the person and his family feel like so, and harm one’s health. Although a comprehensive assessment of the need for medical support is necessary, efforts to correct/fit the gender in the absence of the person, without informed approval, without including the person in the decision processes, do not give positive results and may result in lifelong physical and mental problems. A mental health worker should provide psychosocial support to both the individual and their family in all periods of life, make advocacy, and provide preventive and remedial mental health services. Should plan the health service that centers around intersex, adopt intersex, not family or society, as a service receiver subject.
*Hacettepe University Medicine Faculty, Department of Psychiatry
Translation: Merve Engür
*This article was prepared within the scope of the Strengthening Advocacy for Equal Rights Project supported by the European Union. This does not mean that the content of the article reflects the official view of the EU.
Tags: human rights, health