Barbara Jones

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I decided to become a speaker on behalf of ISNA due to my diagnosis of complete androgen insensitivity syndrome at age 26. This was not the first revelation which came about when I was 19 years of age and trying to find out why I hadn’t had the normal female rites of passage at the onset of puberty. I had secretly gotten my physician father’s textbook on gynaecology and began turning page after page. I remember sitting cross-legged on my bed and seeing a picture of a nude woman with the black bar across her eyes. She looked just like me with the absence of body hair. There was only a page and a half of information but from what it described, I knew who and what I was — finally.

Today, as a far progessed individual since those early days, I have been privileged to embrace and encounter others with whom I share AIS. Listening to some heart wrenching stories, relating them with my own experience and having the opportunity to reach out to the medical profession by offering information and some guidance in the ethical management of intersex conditions, I feel I am well-qualified to get the message out. We are human beings, after all, caught up in a whirlwind of myth, misinformation and mismanagement. That has to be rectified if we are going to be able to withstand what we are born with.

Since my husband is currently president of our county’s chapter of NAMI and with his advocating on behalf of our son and others like him who suffer from mental illness, and having served on the governor’s board of advisors for our state, I half jokingly told him that if he was going to make that his avocation, I would do the same for intersex individuals. Little did I realize that it would become a reality. I took my first step toward that goal and found it to be a very satisfying experience. I am very much looking forward to participating even more.

Building a world free of shame, secrecy, and unwanted sexual surgeries since 1993
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