“It is the culmination of my life’s dream to have others with whom to share my thoughts and feelings about having AIS.”
In 1995, our founder Sherri Groveman, read about the Androgen Insensitivity Syndrome Support Group of the United Kingdom (AISSG) in the British Medical Journal. After visiting the AISSG website and subscribing to their newsletter, ALIAS, Sherri discovered a newfound sense of peace and community. She wanted to help others like her by spreading a message of self-love and acceptance. This feeling of kinship even led her to present a “patient’s perspective” at a British medical conference. Sherri wanted to spread this message to the United States, so she created a North American branch of the AISSG, and began planning for its first conference. With the help of Dr. Charmian Quigley, other medical professionals discovered the group, and awareness increased.
On September 7, 1996, the AISSG of North America held its first meeting in New York City. The group, made up of mostly females with AIS, sought to forge a collaborative relationship with the medical community, so that intersex individuals would be seen as more than patients to be fixed and forgotten. Historically, the medical profession thought that surgeries, hormone therapy, and parental secrecy would ‘cure’ intersex children and allow them to lead ‘normal’ lives. But during the inaugural meeting, doctors learned that these surgeries and hormone therapies led to lifelong health issues and parental secrecy led to shame and broken families.
“My sense of sadness and responsibility stemmed from the fact that much of these women’s pain resulted from well-meaning but misguided efforts of medical professionals to hide the “truth” of their condition from them.”
– Dr. Charmian Quigley
Although the group was formed as an extension of the AISSG-UK, its intent was always to include those with other variations in sex development, their families and allies within the medical profession. Eventually, the group adopted a new name: AIS-DSD Support Group for Women. Opportunities for connection outside of the annual meetings grew with the presence of the Internet. Starting with a ‘listserv’ in the early 2000s, the group communicated via an email forum, and eventually transitioned to a collection of Facebook groups. As the annual meetings continued, the group began to welcome anyone with an intersex diagnosis, regardless of gender.
On its 25th anniversary, the group adopted a new, more inclusive name: InterConnect. While the names and faces of those leading the group have changed over the decades, our goal remains the same — to promote community and connection for intersex children and adults, as well as their family members and allies. As part of our work, we continue to foster thoughtful relationships with medical professionals and promote a patient’s personal informed consent for any medical interventions.