Kimberly Zieselman

Zieselman has described how, at age 15 and because she hadn't menstruated, she was referred to a reproductive oncologist at Massachusetts General Hospital, a teaching hospital, and told that her ovaries and uterus needed to be removed to eliminate a risk of cancer. She had surgery at age 16, requiring a subsequent dependence on hormone replacement therapy. Neither Zieselman nor her parents were told the truth about her diagnosis, that she had androgen insensitivity syndrome, XY sex chromosomes, and internal testes.

Zieselman discovered her medical records at age 41, including a statement that she and her parents had consented after full disclosure of a diagnosis. Discovery was disorientating, challenging her identity and that of her husband, but Zieselman has also described how "I felt free when I found out".

Zieselman trained as a lawyer, and worked in the field of family law and assisted reproductive technology.

Intersex advocacy

In 2009, Zieselman discovered the peer support group AIS-DSD Support Group, and she later became a director of that organization. Zieselman is now executive director of interACT, an organization that promotes the rights of intersex youth, including through litigation, development of youth leadership, and media work.

The main goal of interACT is to end non-medically necessary surgeries on intersex children. Zieselman describes how intersex children just have a different type of body, and genital surgeries are not medical or social emergencies. Zieselman describes how shame and secrecy, and medically unnecessary surgeries on intersex infants causes devastating physical and psychological harm, but they take place for sociological reasons. She calls for a moratorium on surgeries until children are old enough to choose for themselves, with parents given a "full spectrum of choices".

Zieselman is quoted by the United Nations Human Rights Office in New York stating:

Doctors often claim there’s a “silent majority” of intersex people satisfied with the way they were treated as young patients. I used to be part of that “silent majority” - but I certainly wasn’t happy. Doctors draw this false conclusion because most of their young patients haven’t returned as adults to complain. But their silence is just as likely to be caused by stigma and shame.

Zieselman has described how the LGBT community has helped open doors, but how intersex rights are broader: "at its core this is a children’s rights issue. It is also about health and reproductive rights, because these operations can lead to infertility". She has described the MTV series Faking It as ground-breaking, and the public disclosure by model Hanne Gaby Odiele of her intersex trait as a tipping point for the intersex movement.

Selected publications include:

Zieselman is married to Stephen. They are parents of adopted twin girls.