"Doing exercise is something I want to do but I am still not able to do it as I would like"
About the health issues intersex people face
Intersex people’s health is often jeopardised from an early age. Physical long-term effects of surgical and other medical interventions include, but are not limited to, genital insensitivity and impaired sexual function, sterility, massive internal and external scarring, chronic pain, chronic bleeding and chronic infections, osteopenia and osteoporosis at a very young age, as well as metabolic imbalances. Psychological long-term effects include post-surgical depression and trauma (in some cases associated with the experience of rape).
The complications and physical impairments related to these high-risk interventions are well known among surgeons and DSD specialists and have been discussed in many medical articles over the past decades. However, this has not led to the rejection of these interventions by medical experts.
Intersex people sorely need access to expert-sensitive health services. However, they often face severe obstacles when trying to access health and care services, such as ongoing discrimination and (re)traumatising experiences with healthcare professionals.
After birth, as children, adolescents and adults, intersex people face violations of their physical integrity, including medical interventions without personal, prior, persistent and fully informed consent. This can cause psychological trauma as well as severe physical impairments, ranging from painful scar-tissue or lack of sensation to osteoporosis and urethral issues.
"I know it's stupid but I wish I could go skydiving. But I fear my health will prevent me"
Medicalisation and stigmatisation of intersex people results in significant trauma and mental health concerns. It is important to ensure that non-pathologising psycho-social and peer support should be available to intersex people as required throughout their life, as well as to parents and/or care providers.
"I would like to one day overcome all my mental health problems, and I'm proud that I'm already working on that by seeing a psychotherapist"
Pathologisation and "DSD"
“Disorder of Sex Development (DSD)” is a medical umbrella term, which was introduced in 2006 by a Clinician Consensus Statement. Together with new categories of “syndromes”, it replaced the older medical terms. Some clinicians use DSD to stand for “differences of” or “diverse” sex development. However, in all its forms the term pathologises healthy variations of sex characteristics and refers to intersex sex characteristics as characteristics that are “deviant” from the norm of male and female bodies and thus need to be “disambiguated” or “fixed”. The term “DSD” does not align with human rights standards, and is only used in direct quotations or when referring to medical concepts that use the term.
"I would love to be a sportsman or a model. But after surgery I have problems with my bones and spine."
What to do? Right and access to health
National surveys as well as the UN shadow reports clearly show that intersex people lack protection of their right to health. In order to ensure intersex people’s enjoyment of their right to health, States should take measures to:
protect people with variations of sex characteristics from non-emergency, invasive and irreversible “normalising” surgeries and other medical practices without the intersex individual’s personal and fully informed consent
as well as establish:
the right to obtain treatment, including preventive check-ups and needed medication, which are based on the individual’s physical needs and are not limited by the sex/gender marker in their official documents.
the right to lifelong coverage of any medication needed as a result of surgical and/or other interventions on the sex characteristics of a person by national health insurance reimbursement systems.
the right to access to coverage that is not limited by the sex/gender marker in the person’s official documents, for any treatments.
the right to expert-sensitive and individually tailored psychological and psycho-social counselling and support for all concerned individuals and their families, from the time of self-referral or diagnosis for as long as necessary.
the right of survivors of intersex genital mutilation (IGM) to access reparative treatments on the same coverage terms as those provided for survivors of female genital mutilation (FGM).
the right of access to one’s own complete medical records, including for minors.
as well as taking measures to:
include human rights-based information about the existence of intersex people and about intersex issues in all medical curricula and other curricula in the area of health.
establish obligatory training for medical professionals, such as doctors, midwives, psychologists and other professionals working in the health sector (e.g. reception desk staff), in order to ensure that intersex individuals and their families have access to adequate healthcare and are protected from discrimination. The training should include information about the vulnerability and special needs of intersex people in medical settings.
establish obligatory, human rights-based training about the existence of intersex people and about the specific needs of intersex seniors for professionals working in elderly care to ensure that intersex seniors have access to adequate and respectful support and care without discrimination.
invest in funding intersex groups and organisations so that they can engage in projects offering trainings for medical professionals, midwives, psychologists and other professionals working in the field of physical and mental health.
"I'm happy that if I would want to have biological kids I could, with the help of IVF and a donor egg. (Even though I'm an XY intersex person)"
Protect intersex children!
Being born and growing up as an intersex person in today’s society can still be a challenge. However, with love and awareness of everyone, of parents, doctors and institutions, it is possible to grow and live a happy and healthy life. Unfortunately, even today, the lack of knowledge creates and nurtures prejudices and outdated and dangerous medical practices. Not all the stories of intersex people have a happy ending like the one in this video.
Watch, get informed and find out how to make the difference.
Video credit: Antimatter and our member organisation OII-Italia Voiceover: Pidgeon