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.

Lifelong mental health support for intersex people and their families   Kaos GL - News Portal for LGBTI+

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. 

Conclusion 

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
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