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.
On a small mission in the heart of the central Angola highlands, Carolyn Parson’s grandfather delivered her, introducing a healthy girl to a growing family. A healthy and happy baby, she grew to be a bright, curious, and easy going child.
As an energetic 11 year old, Carolyn began a journey that would radically change her life. Her apparently female body started to change. Her muscles began to develop, hair started growing on her body, her clitoris and labia began enlarging. She began to be very shy of her body and never let anyone know what was happening.
Cheryl Chase was our founder. Her ongoing efforts to improve the social and medical treatment of intersexed people have been recognized with the year 2000 Felipa de Souza Human Rights Award, and in diverse publications and numerous television and radio programs including Newsweek, the New York Times, NPR’s Fresh Air, NBC Dateline, ethicist Alice Dreger’s Intersex in the Age of Ethics, social psychologist Suzanne Kessler’s Lessons from the Intersexed, molecular biologist Anne Fausto-Sterling’s Sexing the Body, and Pulitzer Prize winning medical writer Natalie Angier’s bestseller, Woman: An Intimate Geography.
Cindy Stone earned her bachelor’s and masters degrees in Education from Indiana University. She has worked at her alma mater as an administrator and instructor for the past 26 years. Cindy was born looking like other baby girls, and her intersex syndrome was not fully diagnosed until she was an adult in her 30’s. She has the complete form of Androgen Insensitivity Syndrome passed on genetically from her mother. Had she not become inquisitive on her own at age 34 about her medical needs, she might have developed gonadal cancer. She was unaware that her doctors lied to her as a teenager withholding critical information about her syndrome.
Debbie Rode Hartman is a single mother raising her intersexed child who had gender re-assignment surgery at 11 weeks. She is an active advocate for ISNA and has participated in numerous panels about intersex including presentations to the National Organization of Women and the University of Medicine and Dentistry in Piscataway New Jersey. She was interviewed in Canada SexTV’s full-length feature on intersex Redefining Sex and has been interviewed by numerous publications including the San Francisco Chronicle and the New Haven Advocate. She is featured in Total Patient Care, ISNA’s video on the practical application of new methodologies in the treatment of intersexed children. Visit her website on intersex and other special needs.
Ellen Feder is Assistant Professor of Philosophy at American University, where she also teaches in the program in Women and Gender Studies. She has been an active member of ISNA since 1999, when she first presented a paper at the American Philosophical Association that considered the failure of bioethicists to intervene in the medical management of intersex. She has since published work resulting from interviews she conducted with parents of children with intersex, and was a member of the Hastings Center working group, “Surgically Shaping Children.” She is
Eric Vilain, M.D., Ph.D. was born in Paris, France and is currently an Associate Professor in the Departments of Human Genetics, Pediatrics and Urology at UCLA. Dr. Vilain received his B.S. in Biochemistry at the Universite Pierre et Marie Curie in 1987 and then his Ph.D. in 1994 at the Pasteur Institute. In 1995, Dr. Vilain received his M.D. at the Faculte de Medecine Necker Enfants Malades. Dr. Vilain assumes the positions of Chief of the Division of Medical Genetics at UCLA, Director of Female Sexual Medicine in the Department of Urology and Graduate Advisor in the Department of Human Genetics. When he was a medical student, his first assignment was a pediatric service taking care of intersexed infants. He was shocked to see how poor the understanding of this condition was, and how many life-altering decisions were made on behalf of the babies. Dr. Vilain has devoted his academic career to the biology of intersexuality. He serves on several national committees on intersexuality. He has received numerous awards, notably from the NIH and the March of Dimes. Dr. Vilain is an expert in the field of the genetics of sexual development. He has deciphered a large number of molecular mechanisms responsible for intersexuality in humans, such as mutations in the sex-determining genes SRY and SOX9. His laboratory is working on the mechanisms of early gonadal development and brain sexual differentiation.
Lynnell Stephani Long has been involved with the Intersex Society of North America, officially, since 2000 after she met Cheryl Chase in D.C. at GenderPac’s National Lobby Days. She is a columnist for Identity Magazine, a Chicago LGBTI magazine, where she writes on intersex. In addition to speaking locally in Chicago, Lynnell has spoken on ending intersex genital mutilation in Canada, Wisconsin, New York, Georgia, Michigan, Minnesota, Indiana, Colorado, Texas, Tennessee, and Washington, D.C.
She is also a photographer, published poet, and international performance artist.