With the introduction of the civil status “diverse”, specific anti-discrimination measures for inter* people are also legally required in work and professional life. In the implementation of discrimination-sensitive strategies, however, there is often (still) a lack of specific recommendations for action and corresponding support for the practical introduction. Support could for example be offered in the form of language templates for gender-neutral email salutations or suggestions for dealing with previously gender-segregated uniforms. In addition, there is great legal uncertainty as to how the civil status affects legal regulations that have until now been binary, such as “maternity leave” or other forms of so-called positive discrimination, for example through a “quota of women”.

The Federal Anti-Discrimination Agency published two studies in 2020 that provide extensive information on the topic of inter* people in work and professional life, identify problem areas and formulate specific recommendations for action.

“Gender diversity in employment and occupation – needs and implementation options of anti-discrimination for employers” (2020) 

This publication is explicitly aimed at employers and provides specific recommendations for action on how the workplace can be designed to be as sensitive to discrimination as possible. Based on the current state of research and on the basis of expert interviews, the study identifies and shows various areas of action for the anti-discrimination of intersex people in professional life then shows specific options for implementation for employers. In a total of 26 modules on the topics of corporate culture, recruitment, handling of gender-related data, language and communication, sanitary facilities as well as body, clothing and health, practical recommendations for action are formulated for professional practice, which should enable the recognition and implementation of gender diversity in working life. In addition, the publication refers to nationwide advice centres and other resources such as language guides and additional information material for education and raising awareness. You can order the study here or download it as a PDF file.

“Beyond male and female – People with variants of gender development in Federal labour law and public service law” (2020)

This second publication under the title explains the legal consequences of civil status with regard to work and the law of the public service. Since both areas of law have so far followed a binary gender model, the study will work out which areas of law are also applicable to intersex people with a diverse gender registration and in which areas the legislation will have to provide clarification in the future. For this purpose, the specific need for adaptation of various regulations is named for which gender is relevant as a constituent feature (such as regulations on “maternity protection”). The analysis not only takes German constitutional law into account, but also the law of the European Union, which plays a central role in relation to gender-based discrimination in the workplace. You can order the study here or download it as a PDF file.

The Institute for Diversity and Anti-Discrimination Research (IDA) has also published two studies on the topic of inter* in the workplace.

“Inter* in the office?! – The work situation of inter* people in Germany from a differential perspective to (endo*) LGBT*Q+ people” (2020)

The aim of this study was to examine the work situation of inter* people and to compare it with the experiences of endosex LGBT people. To this end, 32 inter* employees and 1223 endo* LGBT employees were asked about their work situation and experiences of discrimination in the workplace. The main results of the study are, for example, that all surveyed groups are still confronted with hostility and discrimination in the workplace. However, the discrimination was even stronger among inter* persons and trans* and/or non-binary persons who are (more) read as deviating from a binary gender norm. You can order the study here or download it as a PDF file. 

“Out in the office! Out with customers” (2021)

This study asked even more specifically about how LGBTI people deal with their own sexual orientation or gender identity in customer contact at work. To this end, 1,012 LGBTI people, 25 of them inter* people, were asked about their experiences in dealing with customers. The main results of the study are that respondents tend to deal more openly with their own sexual orientation or gender identity in customer contact than, for example, in contact with colleagues or superiors, and that between a fifth and a third of those surveyed stated having already had experience of discrimination in dealing with customers. You can order the study here or download it as a PDF file.

Despite the efforts of self-organisations and activists, operations on the genitals of children are still taking place that do not correspond to the expectations of parents or medical professionals. Research results show that there was no overall decrease in these interventions between 2005 and 2016.[1] Such cosmetic operations on children unable to consent have long been classified as human rights violations by self-help organisations and the UN. In May 2021, the “Law for the protection of children with variants of gender development” passed by the Bundestag came into force. The law followed a ministerial draft that was sent to the Federal States and individual associations for comment on 9 January 2020, and which served to implement the coalition agreement between the CDU/CSU and the SPD, which should make it clear by law that “gender reassignment medical interventions on children are only permitted in cases that cannot be postponed and to avert danger to life.” [2] In May 2021, the law was passed in which it now literally states:

“(1) The care of persons does not include the right to consent to the treatment of a child who is incapable of giving consent and who has a variant of gender development, or to carry out this treatment oneself, which, without any further reason for the treatment, takes place solely with the intention of making the child’s physical appearance match that of the male or female sex.”

In future, therefore, those surgical interventions on intersex children will be expressly prohibited for which there is no medical indication, but which are only carried out with the (cosmetic) aim of adjusting the external sex of the child to a male or female norm. In cases of medically necessary but not immediately life-saving operations, in which a decision cannot be postponed until the child is able to give consent, the parents can decide on the operation, but only with the consent of a family court. In future, the court is to decide in these cases on the basis of an opinion by an interdisciplinary commission consisting, among others, of the medical person treating the child and a person with child and youth psychotherapy qualifications.

If a child who is capable of giving consent wishes to have an intervention him or herself, this can also be carried out. The distinction between the child capable of giving consent and the one incapable of giving consent is generally made in the case of medical treatments without stipulating a statutory age limit in specific individual cases, also taking into account the child’s level of development with regard to the perception and reflection of its own gender identity and is determined by the parents and the person treating.

The “Law for the protection of children with variants of gender development” is an overdue and correct step to protect intersex children, but it remains to be seen whether and with what consequence it will actually be applied in individual cases. The Federal government has committed itself in the law to review the effectiveness of the new regulations after five years and to submit a corresponding evaluation report to the Bundestag. 

[1] Hoenes, Josch; Januschke, Eugen; Klöppel, Ulrike (2019): Frequency of norm-adjusting operations of “ambiguous” genitals in childhood. Follow-up study. Berlin: Centre for transdisciplinary gender studies.

[2] Coalition agreement between the CDU, CSU and SPD, 19. Legislation period (2018). p. 21, 797-799.

There is no registered inter* counselling service available in NRW.

However, the Verein Intersexuelle Menschen e.V. (Association of Intersex People e.V.) offers peer counselling outreach services.

“Peer counselling” basically means that the people providing the advice are themselves intersex or are the parents of an intersex child. They can draw upon their own experiences and provide advice on equal terms.

You can find out more about peer counselling services here.

Verein Intersexuelle Menschen e.V.  http://www.im-ev.de/

There is also a family self-help group, called Lila NRW, which meets regularly in Cologne. Further information can be obtained here: Email.

The website of the self-help group for parents and family members of inter* people (interfamilien) also provides information on personal meetings, literature and various topics related to inter*. 

You can also receive advice on physical matters from medical professionals. Experiences can vary greatly in this regard. It is important that you feel that you are getting good advice and that you feel comfortable throughout the process. It is a good idea to seek advice from support groups and to learn from other peoples’ experiences. Try to work with a doctor you feel you can trust.

Counselling services, which deal with the concerns of intersex people in a sensitive way, include:

Bochum (Rosa Strippe)

Rosa Strippe provides advice to inter* people and their relatives as part of an initial counselling service or “clearing” process (this involves establishing the kind of support that is needed and how it is going to be delivered). The staff have access to a well-researched pool of information, including the contact details of people from support groups and health services. Rosa Strippe provides advice on the protection and safety of intersex children, young people and adults in a subjective way. It deals with matters concerning gender diversity positively, placing the wellbeing of the child at the heart of the process.

Cologne (rubicon e.V.)

Rubicon e.V. also provides counselling services to intersex people, as part of its psychosocial counselling service, offering advice on issues such as sexual orientation, forming a rainbow family and gender self-determination.

Rubicon e.V. does not offer a specialised counselling service to inter* people, but instead performs a signposting role, referring people seeking advice to peer-counselling services such as the Verein Intersexuelle Menschen e.V. Being referred onto the peer counselling service is particularly helpful for inter* people who may be in the process of coming out and for the parents of intersex children who can get answers to the many questions they may have concerning medical matters.

Münster (pro familia)

pro familia Münster advises inter* people, their partners, families and friends competently, sensitively and confidentially. The topics of the consultation can be: Identity and self-description; body, coming out, relationships, local offers, experiences of discrimination, (unfulfilled) desire for children, parenthood of inter* children.

A number of counselling services offered by pro familia NRW, such as:

pro familia Bielefeld

pro familia Cologne Central

pro familia Mettmann

pro familia Oberhausen

pro familia Remscheid

pro familia Sankt Augustin

pro familia Witten

Further information and services offered by support groups (across Germany) can be found here: 

Support groups offering specific advice on diagnoseshttp://www.klinefelter.de/cms/
OII (Organisation Intersex International)  https://oiigermany.org/
Antidiscrimination initiatives & Empowerment for Inter* https://interprojekt.wordpress.com/
Kampagne für eine Dritte Option (Campaign for a Third Option) http://dritte-option.de/
DGTI (Deutsche Gesellschaft für Transidentität und Intersexualität e.V.) [German Association for Transidentity and Intersexuality] https://www.dgti.org/

Youth groups for LGBT people may also be of interest to young inter* people. Further information on LGBT youth groups in NRW can be found at Queeren Jugend NRW. Here you can find out whether issues concerning young intersex people have been taken into account and dealt with.

There is also a blog written by researchers based in Hamburg on the subject of inter* which provides advice on reading materials, events and information on gender diversity. This can be found at: Blog Intersex kontrovers.

The United Nations has also focused on inter* matters and has set up a campaign that calls for a greater awareness of the subject. Videos, accounts from intersex people and fact sheets can be accessed at: Free & Equal (Intersex Awareness by the United Nations). (English)

Intersex people have not often been seen in the public arena. They are rarely represented in series, books or on television.

We have brought together here a number of accounts by intersex people and their families who have shared various aspects of their lives with us.

There are a number of videos, articles and projects on the subject of intersex on the internet. We have listed a few them here: OII Europe (Organisation Intersex International, Europe) has gathered together the testimonies of inter* people from across Europe in the section of their website called #MY INTERSEX STORY. If you look on the project page, you will find videos and information about the project. Inter* people from across the whole of Europe tell their stories in the book. (The website and testimonies are in English)

The Interface Project, which was founded in 2012, portrays the various everyday realities of intersex people. The people introduce themselves in short videos and give accounts of their lives. Each video is accompanied by a transcript.

The TV programme Auf Klo on the public youth TV channel funk has a guest called Audrey from Switzerland in one of its episodes. Audrey talks about various experiences, such as the medical procedures, that she underwent as a child and teenager.

(The videos are in German, French or English. Most of them also have German subtitles..)

You can watch other videos by Audrey on her YouTube channel (Audr XY).

There is a video on Planet Schule, a website that provides education about the media, in which Lynn from Berlin explains what it is like to be intersex.

OII Europe’s YouTube channel includes a video entitled “My intersex story”.

(English with German subtitles.)

The German TV channel WDR also aired a segment in which a mother is interviewed about what it is like to have an intersex child.

Ted Talk by Emily Quinn – The way we think about biological sex is wrong (English with German subtitles). Emily Quinn is an author, graphic artist and an activist with InterAct. The books Inter*Trans*Express and Identitätskrise 2.0 are a collection of short stories, poems and drawings on everyday life and the protest activities of a “gender outlaw”. Both books describe personal experiences and highlight the viewpoints of inter* people.

Here is a list of further materials by intersex people:

Books and websites

This anthology includes short, personal stories by intersex people from all over the world:

Short stories, poems and drawings by an intersex person:

Websites on which intersex people tell their stories:

Other websites and pamphlets on Inter*:

  • Regenbogenportal – an online information service on same-sex lifestyles and gender diversity. An extensive range of useful and informative texts on the subject of intersex produced by the German Federal Ministry for Family Affairs, Senior Citizens, Women and Youth (BMFSFJ).
  • Inter* und Sprache. a pamphlet relating to the antidiscrimination project by TransInterQueer.
  • If you want to explore the subjects of acceptance and diversity in more detail, you can find lots of recommended children’s books in the pamphlet Akzeptanz für Vielfalt.

Video clips

Recommended movies/documentaries:

Comics and graphic novels

By Dr Oliver Tolmein (lawyer, Hamburg)

Being intersex is not an illness. Nonetheless, inter* people often need to work closely with doctors for many years. This is sometimes as a result of the after-effects of operations or due to check-ups or follow-up appointments.

The S2k Guideline on intersex has been available to medical professionals since 2016. The guideline defines these “variations of sex characteristics”. Many doctors, parent groups and intersex people themselves have worked on this guidance. Treatment guidelines are important for medical professionals, however, they are non-binding. No one is required to abide by them. However, any deviations from the standards specified in the guidance must be well justified by the medical staff in the event of liability.

Basic rules apply to any form of medical treatment and the way they are documented:

  1. Medical treatment can only be undertaken with the consent of the patient.[1] Consent only becomes effective if the patient has been provided with detailed information about the material facts of the treatment.[2]
  2. When patients are unable to give their own consent, for example, in the case of a young child, the procedure is inadmissible. This applies especially to irreversible gender reassignment procedures. This is touched upon in “Recommendation 31” of the treatment guidelines: “The indications for surgical treatments for children who are unable to give consent shall always be classed as restrictive. Guardians of the child can only provide consent for these procedures carried out on a child who cannot give consent which are medically indicated and prevent the child from suffering any subsequent harm.”[3]
  3. Moreover, patients for whom consent has been granted by a representative, must be provided with information about the treatment[4]. This is particularly important for children who are not yet able to give consent, but who are able to communicate verbally. This is important not least because it makes it clear that the people concerned have the right to know why they are receiving treatment and what exactly is going to happen to them.
  4. There is no fixed age from which children are capable of giving consent or a point up to which they are not capable of giving consent. There may certainly be children who are capable of giving consent to certain procedures. Their consent is therefore also a prerequisite for the legitimacy of the treatment.
  5. Patients are entitled to inspect their own medical records. However, doctors and hospitals are only required to retain the records for 10 years.[5]
  6. Consent can become ineffective, if the doctors are carrying out treatments without providing appropriate information about all the aspects of the treatment or if they have made inaccurate statements. Carrying out a treatment without consent is at the very least a form of physical assault. Physical assault is generally regarded as a criminal offence[6] which usually results in claims for damages.[7]

Other important factors play an important role in the doctor-patient relationship. The physician’s duty of confidentiality is especially important. Patient confidentiality is in place to protect a patient’s personal privacy. Sometimes difficult situations can arise, for example, when young people under the age of 18 do not want doctor-patient conversations to be shared with parents. The legal situation varies on a case-by-case basis. Generally speaking, patient confidentiality needs to be maintained in these cases too. Exceptions in this respect exist if the doctor is trying to serve a higher legal purpose by breaking confidentiality, for example, if it is believed that the patient is at risk of attempting suicide. However, confidentially must always be maintained with respect to third parties, but never with respect to patients. Patients always have the right to know why they are receiving a particular treatment and how it is envisaged that the treatment and condition will progress.[8]

[1] § 630 d BGB.

[2] § 630e BGB.

[3] Cf. the text by Oliver Tolmein “Chirurgische Eingriffe am Genital nicht einwilligungsfähiger intersexueller Kinder und der Schutz der geschlechtlichen Identität” in MedStra, Zeitschrift für Medizinstrafrecht (Journal for Medical Criminal Law), no. 3/2019.

[4] § 630e para. 5 BGB.

[5] § 630f para. 3 BGB, § 630g para. 1 BGB.

[6] § 223 StGB.

[7] Two actions have been brought before a court. Both claimants won their cases.

[8] § 630c para. 2 BGB.

By Dr Oliver Tolmein (lawyer, Hamburg)

Any rights in place for people covered by statutory health insurance comply with the German Social Security Code V (SGB V).

An important right is the “freedom to choose a doctor”[1]. However, there are two important restrictions:

1. You are only permitted to select a doctor who has entered into a contract with the health insurance scheme[2]. However, this restriction does not apply in emergency cases.

2. Doctors cannot be forced to accept someone as a patient. If they have too many patients to deal with and can only offer an appointment far ahead in the future, there are not many efficient ways to refuse to accept this offer.

It sometimes can be the case that if intersex children and adults have to undergo medical treatment, the health insurance scheme will call in the Health Insurance Medical Service (MDK) which will then prepare a statement which either approves or rejects the planned procedure. In many cases, the MDK decides whether the patient is entitled to the planned procedure, based on the “Assessment guide on gender reassignment procedures for transexuality”. This is usually negative because certain requirements (for example, a course of psychotherapy lasting several months) would not be provided. 

In legal terms, statutory health insurance should be regarded in the same way as a public authority. Its decisions are basically decrees. Every citizen has the right to appeal against the health insurance fund. If the appeal is not upheld, it is possible to lodge an appeal before the Sozialgericht (Social Welfare Court) against the appeal decision. If the appeal is rejected, it is possible to lodge a further appeal. If this is rejected, it is also possible to lodge an appeal before the Bundessozialgericht (Federal Social Welfare Court).

If the health insurance fund turns down an application to provide medical rehabilitation or a type of treatment, you can either accept the decision or refuse to accept it. You can choose to work with a lawyer, to seek advice and support from one of the large charities or you can also represent yourself in court. It is necessary to use a solicitor if you lodge an appeal before the Bundessozialgericht. You will not be charged by the court for the costs of the proceedings, i.e. the legal proceedings are exempt from charges. If you are on a low income, it is possible to apply for legal aid (PKH) to cover the costs of legal representation.

Health insurance benefits are generally granted irrespective of gender. This also applies to medical services which relate to gender, for example, cancer screening for breast or prostate cancer. However, there are exceptions, such as § 24i which governs the payment of maternity benefits which are only for “female members”. The SGB V (German Social Security Code) accords with the BGB (German Civil Code) which only recognises “the woman who gave birth to the child” as the mother of a child. Intersex people can therefore only receive maternity pay if their civil status is specified as “female”. However, in the author’s opinion, this interpretation of the regulation infringes a person’s right to equal treatment as stated in article 3, para. 3, clause 1 of the German Basic Law (GG). In addition, since its last reform, § 1 para. 4 of the Maternity Protection Act (Mutterschutzgesetz) clearly states: “This law applies to every person who is pregnant, has borne a child or who is breastfeeding.” This legal clarification also correlates with provisions stated in § 24i of the SGB V (German Social Security Code). It is also not possible to interpret and apply other provisions stipulated in health insurance law in such a way that they disadvantage intersex people due to their gender.

Judgements on claims submitted by inter* people are very rarely given against statutory health insurance funds. In 2014, the Federal Social Welfare Court decided that inter* people who apply for breast augmentation surgery in order to achieve what is commonly perceived to be a more female appearance, cannot pursue a claim to cover these costs with the health insurance company if this person’s breasts have already developed to at least a size A cup.[3]

[1]  § 76 SGB 5 (German Social Security Code).

[2] For example, there are also doctors who only accept private patients. However, in the case of private clinics which have an excellent reputation for carrying out plastic surgery and which do not have a service agreement with statutory health insurance schemes, it is rarely possible for patients with statutory health insurance to receive treatment that is funded by a statutory health insurance scheme. The health insurance schemes are governed by the efficiency rule stipulated in § 12 of the SGB 5 and are only required to provide services which are “acceptable, which serve a purpose and are cost-effective”.

[3] BSG 1. Senate, 04/03/2014, file reference: B 1 KR 69/12 R.

By Katrin Niedenthal (lawyer, Bielefeld)

The term Personenstand (civil status) is used in Germany. This encompasses all pieces of information relating to births, marriages (civil partnerships) and deaths, and any information connected with family status and names. A number of registers are used to record a person’s civil status, e.g. birth registers, marriage registers and death registers.

The German Federal Constitutional Court passed a resolution on 10/10/2017 which determined that entering the gender of a person into a register establishes and expresses this person’s identity. This means that the recognition of the gender identity of intersex people in terms of their civil status is protected under the German Basic Constitutional Law.

At birth

When registering their child’s birth at the registry office within one week[1] of their child’s birth, the parents must provide different types of information and specify the gender of their child.[2] This information is entered into the register of births. The registry office then issues the birth certificate.

If either the male or female gender cannot be assigned to the child, this section of the form can be left blank or it is possible to enter the word “diverse” instead.[3]

Unfortunately, a lot of people still do not know that it is possible to leave this section blank or use the term “diverse”. Parents often feel under pressure after the birth to enter the gender of their child as either “male” or “female” and/or to allow gender reassignment operations to be carried out on their intersex child.

Operations which are not required for medical reasons and are carried out without consent are recognised as human rights violations. An outright ban of these types of procedures is currently under discussion in Germany. You can find out more about this here.

Changing the gender entered on the records

It is possible to change the gender that has been entered into a civil register retrospectively.[4]

In accordance with § 45b of the PStG (German Civil Status Act), it is necessary to inform the registry office that corresponds with the place of the child’s birth which assignation you would like to be recorded for the future (“diverse”, “male”, “female”, or left blank). It is also possible to register a new first name or the previous name that was registered can be amended.[5] It is permissible to register a gender-neutral name. People who enter the word “diverse” or who do not enter a specific gender are also permitted to register a first name which can be associated with both the male or female genders.

If only the first name is going to be changed, it is necessary to discuss the matter with the appropriate registry office. If required, an application must be made in accordance with the Change of Name Law (NamÄndG).

It is necessary for the legal guardians of children under the age of 14 years to request a change to the gender and first name recorded in the register. Young people older than 14 years must make this request themselves, however, they also require permission from their legal guardians (parents in most cases) while they are still underage. If the child’s legal guardians do not agree to this request, approval can be granted by a family court if changing the information relating to the child’s gender and first name on the register does not put the child’s welfare at risk. The young person does not have to apply to the family court in person. In accordance with § 168a para. 1 FamFG, the registry office is required to inform the family court. You can find out more about the rights of minors here.

To comply with § 45b of the PStG (German Civil Status Act), the declaration must be certified by a notary, which can be carried out by any registry office or by a notary. If the declaration is certified by a notary or by the registry office that corresponds with the person’s place of residence, it must be forwarded to the registry office that corresponds with the person’s place of birth. This office is responsible for changing the register of birth.

Further information relating to the registry office that must be communicated with if the person in question was not born in Germany is stated in  § 45b para. 4 of the PStG (German Civil Status Act).

Official registry offices also require that a medical certificate is presented which states that there is “a variation of sex characteristics.” A simple certificate is sufficient and it is not necessary to specify a diagnosis. A statement from a doctor formulated along the following lines is adequate: “I hereby confirm that the individual concerned has variations of sex characteristics.” If the medical records also include a relevant diagnosis, this can also be submitted so that it is not necessary to visit the doctor to obtain a certificate. However, as it is usually the case that registry office staff do not have the necessary specialist knowledge at their disposal and will not be able to determine whether the medical documents confirm “a variation of sex characteristics”, we recommended that you obtain a specific certificate that confirms “a variation of sex characteristics”.

You can also affirm the existence of “a variation of sex characteristics” by submitting a declaration on oath. However, this is only provided for if it is no longer possible to affirm the existence of a “variation of sex characteristics” as a result of hospital treatment or if it can only be affirmed through a type of investigation that the individual finds intolerable, and it is not possible to submit a medical certificate as a result of medical treatment that has already been given.

If these conditions are met (certified statement and presentation of a medical certificate or affirmation in lieu of an oath), the registry office will change the civil status record. It is also possible to apply for a new birth certificate to be issued. You can then insist that other agencies (e.g. employers, schools, universities) change the entries against your gender and, if necessary, your first name in their records. If you want your first name to be amended in addition to your gender, you should also ask the registry office to confirm that you have changed your first name as this will enable you to prove your personal identity.

Legal procedures

If the registry office refuses your application to change your gender (e.g. because the staff there believe that the requirements have not been met), it is possible to lodge an appeal with the county court which governs the registry office that holds your birth records. The court is able to instruct the registry office to change your civil status record.[6]

If the staff at the registry office are not sure which details need to be entered into the records, it is also possible to ask the county court to help clarify what is classified as a “Zweifelsvorlage” (a submission requiring clarification).[7]

Unresolved questions and regulatory requirements

The ability to enter “diverse” or leave this section blank when recording your gender is relatively new. This means that registry offices are sometimes uncertain or don’t have enough experience in terms of what this means on a practical level for people who have entered this type of information on their personal identity documents.

For example, there can be differing opinions concerning when a “variation of sex characteristics” is applied. Some members of staff only want to accept this in the case of specific diagnoses. Others only accept the entry if the person in question does not identify as either “male” or “female”.

In addition, now that it is possible to leave this section of the record blank or to enter “diverse”, there are further legal requirements that need to be considered.

For example, the provisions of the law of parentage as stated in the BGB (German Civil Code) have not been amended to conform to the new legal position. According to the BGB (German Civil Code), for example, a person who gives birth to a child is still described as a “mother” even if this person is not “female”.[8] If this or other regulatory loopholes arise on a practical or legal level, it is necessary to seek the help of an advisory service or a specialist lawyer.

[1] §18 of the PStG (German Civil Status Act)

[2] § 21 of the PStG (German Civil Status Act)

[3] § 22 para. 3 of the PStG (German Civil Status Act)

[4] § 47 of the PStG (German Civil Status Act)

[5] § 45b of the PStG (German Civil Status Act)

[6] § 49 of the PStG (German Civil Status Act)

[7] § 49 of the PStG (German Civil Status Act)

[8] § 42 of the PStV (Personal Status Act)

Most people generally don’t look forward to visiting the doctor. Inter* people and parents of intersex children or young people can find these visits particularly difficult and overwhelming due to their special nature. They can even turn out to be unpleasant and upsetting.

Some visits to the doctor can involve discussing physical variation, whilst other appointments may concern other health matters. However, regardless of the type of visit, it can often lead to unpleasant or unexpected situations.

We would like to give you a few tips to help make these types of situations easier to handle. You can decide for yourself which tips would be most useful to you:

Be prepared

  • Write down questions
    It doesn’t matter what sort of doctor’s appointment you will be attending, it is useful to write down a few questions beforehand that you definitely want to be answered. You can find out from support groups and online forums which kinds of questions could be important for your appointment and what type of examination you might need to expect.
  • Prepare answers
    It can also be useful to prepare answers to specific questions the doctor might ask, especially before you attend routine appointments or appointments with your general practitioner. This is because, depending on which gender is specified on your or your child’s medical record, certain assumptions are made which may not necessarily need to apply to your body or your child’s body. Pre-formulated answers to specific questions can help you to feel less anxious in these situations and to retain control over the conversation. It can be useful to find out about other people’s experiences and to ask for their advice about your concerns.

Emotional support

  • Take a trusted person with youa
    Emotional support is important. For example, it can be very helpful to have a trusted person by your side who will help you to feel safe and secure. It is also important to remember that two heads are often better than one. The two of you together are more likely to remember everything the doctor has said.
  • Sensory distraction
    Sensory distraction can help to reduce anxiety because it diverts your attention away from your fears and even rising panic towards something else that is more pleasant. There are a few techniques you could try, such as listening to a playlist of your favourite songs whilst you are in the waiting room or watching some videos on the internet. You could also try using a hand cream which smells particularly nice or aromatherapy oil. Taking sips of cold water can also help.
    Mindfulness exercises can also help to reduce feelings of panic that may be starting to increase.
  • Taking care of yourself after the appointment
    After you have experienced a stressful and perhaps unpleasant visit to the doctor, it can be good idea to spoil yourself a little or to try to connect with people from your support network. Perhaps you could treat yourself to a delicious ice cream, maybe read a book and/or have a chat with your friends.

Your doctor’s appointment

  • Ensure you are able to ask questions
    If you are feeling unsure, find out what you need to expect from your appointment at the doctor’s surgery or at the hospital. Also feel free to ask why the procedure is taking place and what will happen throughout the process. You should also ask what the findings mean to ensure that everything is happening for a good reason in order to better understand your own body or the body of your child.
  • Ask for specialist terms to be explained
    If the meaning of specialist terms is not clear, then ask for them to be explained. You have the right to not only hear what the doctor is saying but also to understand it. This also applies to all treatments or therapeutic measures, particularly if the procedure is expected to be invasive (e.g. through surgery).
  • Take copies of your patient documents
    Whenever you visit your doctor to discuss intersex matters, it is particularly important to ask for copies of any patient documents. This ensures you will always have the facts to hand if you change doctor or need to check any details.

Even if you are being well cared for by medical staff, it can often be the case that you are the best expert when it comes to your or your child’s experience of being intersex. It can be frustrating if you in fact know more about intersex than the doctor. However, this could give you the opportunity to share your knowledge. For example, it might be useful to take one of your pamphlets or to recommend this website to enable the doctor to acquire more knowledge. It can also be helpful to discuss matters with other experts, for example, those that offer advice in support groups.

Doctors can sometimes be intimidating. If you want to find out more about your rights, please take a look here.

It is also still the case that doctors will recommend operations on the genitals which are not necessary for health reasons. These types of operations on young children are now recognised by the UN as human rights violations. If you would like to find out further details about this, please click here.

The most important thing when visiting your doctor is that you should feel you are being well looked after and supported. The doctors are there to help you or your child to feel better!

Cosmetic operations on intersex children are carried out to this day. The number of operations on the genitals of children that do not correspond with the expectations of parents and medical professionals is not declining despite the campaign efforts of support groups and activists.[1]

Many organisations, such as the UN, Organisation Intersex International (OII), Amnesty International etc., define these surgical procedures as human rights violations because the children are not able to make decisions about their own bodies. These organisations believe that informed consent should be required from anyone who undergoes surgery. Parents should only be able to decide if their child should be operated on if the child’s health is at risk.

In addition to operations carried out without consent, there are other areas which can be considered as violations of human rights. For example, when the right to grow and develop in your own way is being violated or it becomes difficult to access your own health records.

Human rights, which are enshrined and protected by human rights law, presuppose that all people should be protected from discrimination and have the right to a private life. They should also be able to achieve the best level of health possible, and to be self-determined and recognised as individuals.

The human rights of intersex people are violated if

  • intersex is classed as a disorder.
  • surgical procedures are carried out on inter* children without consent.
  • informed consent is not taken seriously.
  • the right to grow and develop in your own way (particularly in terms of gender identity) is not respected.
  • it is difficult to access medical records.
  • it is difficult to join sports clubs and other organisations due to discrimination.

You can read a comprehensive report by OII Germany about human rights violations here.

In its survey (2020), the European Union Agency for Fundamental Rights (FRA) also asked inter* people about their experiences of discrimination. These can be viewed in detail on the FRA website. The LSVD has briefly summarized the data.

Amnesty International has also focused on the subject of intersex and human rights. On the Amnesty International website, you can also read stories by inter* people whose rights have not been and are not being protected.

You can also find some suggestions of what you can do to protect the human rights of inter* people in the document solidarity and support.

[1] Hoenes, Josch; Januschke, Eugen; Klöppel, Ulrike (2019): Häufigkeit normangleichender Operationen „uneindeutiger“ Genitalien im Kindesalter. Follow-up study. Berlin: Centre for Transdisciplinary Gender Studies.