4. Te Ruaruanga Taha Wahine, Taha Tane:

I was never asked if I would agree to be changed. I didn’t know I was XXY. They knew but they never told me. In my eyes it is wrong and it should never have been done to me. I would have liked to be left to make up my own mind. (Intersex person)

A number of people with intersex conditions made submissions. They used a variety of terms to describe themselves including intersex, intergender, gender neutral and/or transgender.

We are the hidden people. It’s seen as a medical problem to be fixed. The intergender movement was started by intersex people trying to claim the wholeness of themselves. If they don’t wipe us out, it will be interesting to see how people start redefining themselves. (Intergender person)

Submitters expressed major concerns about the effects of medical interventions performed because their bodies had reproductive or sexual anatomy that could not be easily defined as male or female. Some were operated on as infants or young children and said their parents were not always aware of the procedures involved or the ramifications. In other cases, particularly when intersex conditions developed after puberty, submitters had undergone surgeries as an adult. Some did not consider they were given sufficient information to provide informed consent.

Many described the shock of finding out that they have an intersex condition, particularly if that information had been withheld for many years. Often submitters felt isolated. A number of submissions noted the secrecy and shame associated with intersex conditions made intersex children vulnerable to sexual abuse.

In most cases, submitters had not been able to access medical records containing details of the treatments they had received.

In the course of looking for my medical records I have been told by three doctors that I will not be able to find them if I am an intersex person, and that I should give up looking. (Intersex person)

Many questioned the appropriateness of care, including the side effects of hormones and inadequate reassurances that surgical procedures would make their physical body unambiguously male or female. One submitter who had undergone reconstruction surgeries recounted receiving an apology from a new specialist:

My specialist apologised on behalf of the medical system. He said that what they’d done was a failure, a total disaster. (Intersex person)

Some intersex submitters were taking hormones or seeking surgery to reverse medical interventions performed on them as children. Submitters noted that there was public funding to provide surgical treatments to treat their intersex conditions, but no funding to reverse those procedures.

Submitters’ solutions to improve the human rights of intersex people:

- intersex people and families should be spoken to honestly about intersex conditions and receive counselling and support;

- except in the case of medical emergencies, intersex children should not be operated on to remove ambiguous reproductive or sexual organs;

- medical records should be retained intact so children can make informed decisions at a later date;

- improve medical training on intersex conditions;

- ACC or health funding should be available to reverse procedures performed without informed consent, in cases of medical misadventure, or when an adult’s gender identity is in conflict with the biological sex they were assigned as a child; and

- the Human Rights Commission should conduct a specific inquiry into issues for intersex people.

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