English

INTERSEX SCANDINAVIA envisages a world where the diversity of the human body is both recognized and celebrated beyond our current system which only validates people with bodies and genders which conform to male or female. INTERSEX SCANDINAVIA as an organization offers support and advocacy for people with intersex variations, that is, bodies that do not conform to the standard definitions of female and male. IS also offers information to families, patient support groups, and concerned health professionals..

Introduction:

The majority of information currently available in Scandinavian languages is pathologizing and does not allow for thinking outside of a diagnostic framework. Most parents/families with intersex children are only given information about specific medical details, not about alternative ways of thinking about their child’s bodily development. The medical details given assume a two-sex model that makes it difficult to imagine or embrace intersex diversity. Families repeatedly report that the medicalised information leaves them in a difficult situation when it comes to explaining their child’s development to other people. Further, not being able to talk with people other than clinicians, can leave families feeling isolated and shamed. Being able to meet others who have had similar experiences, and talk with support people whose perspective is not primarily medical, makes a positive difference for many families.

Non-essential medical interventions, (for example genital surgery performed on infants in order to normalize function and appearance), can be intensely shaming and lead to the loss or reduction of sexual sensation. An increasing number of intersex individuals who had surgery and/or other medical interventions as infants, to normalize their bodies, are coming forward and talking about the ways in which they were damaged, shamed and stigmatized.

Intersex adults repeatedly report that they are dissatisfied with, or devastated by, the surgery and medical examinations they went through as children, yet these experiences are not systematically reported in research, and the research that is done does not systematically feed into current medical practice. The result is that current medical practice may, in many cases, be repeating past mistakes. Further, intersex adults repeatedly report that they cannot access adequate on-going health care. This may be because prior experiences with medical professionals have made it unthinkable to trust health professionals again, and it may be

because few health professionals have training and experience in working sensitively and respectfully with intersex people. This needs to change in order to ensure that intersex people get life-long access to respectful and appropriate health care.

While many intersex people are comfortable fitting within the categories of female/male, a significant percentage of us are not. An alternative sex marker, such as O (as in gender Optional) or X, has been proposed. Such an alternative can offer legal and social validity that are important grounds for legal protection (e.g., against discrimination). This is a level of protection that we currently do not have in Scandinavian countries. We would resist any call for this alternative sex marker to be restricted to only those who are medically diagnosed (within the range of DSD/intersex diagnoses) and believe it should be an option open to all people, regardless of bodily sex or gender identity.

We aim to:

1. Provide alternatives to the information currently available in Scandinavia regarding issues involving intersex, variations of sex and/or reproductive anatomy and DSDs. Our goal is that this information will be available in all Scandinavian languages and English.

2. Educate the public, the media and health professionals about the real life consequences of non-essential medical interventions that continue to be performed on people with bodies that fall outside traditional sex categories. Education that is norm-critical is an essential aspect of our mandate.

3. Provide support for families, including contact with intersex adults and groups with similar intersex variations, both online and in person where possible.

4. Instigate and support follow-up studies with intersex adults who were subjected to surgical intervention as children, as well as monitoring current medical care of intersex people at all stages of life.

5. Create a legally valid, gender-neutral sex marker, such as ‘hen’ and at the same time work towards creating a system where sex markers in themselves are unnecessary for social and legal validity.

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