Supporting Young People with Intersex Traits
(First appeared in Feminists for Choice, October 22, 2012)
Tell our readers a little bit about Advocates for Informed Choice and Inter/Act.
Advocates for Informed Choice (AIC) is the first, and only, organization in the U.S. to undertake a coordinated strategy of legal advocacy for the rights of children with intersex conditions or DSDs (differences of sex development). AIC uses innovative legal strategies to advocate for the civil rights of children born with variations of reproductive or sexual anatomy. AIC engages parents, doctors, attorneys and intersex activists in strategy discussions; stimulates legal dialogue about the fundamental rights of children born with intersex conditions or DSDs; and employs traditional and non-traditional legal tools to ensure justice for children born with intersex conditions or DSDs.
Inter/Act is the first intersex youth leadership development program created to provide facilitate the development of tomorrow’s intersex advocates. Inter/Act is a place for young people with intersex conditions or DSDs the world over to come together, express themselves, and unite their individual stories to develop a voice for a new generation. Inter/Act’s goal is for peers, parents, doctors, scholars, and supporters to gain a better understanding of the varied experiences and perspectives of young people with different bodies. Inter/Act presents the unique voices of members in the Inter/Act community. Inter/Act welcomes young people with intersex conditions/DSDs no matter how they identify.
Inter/Act is the first intersex youth leadership development program created to provide facilitate the development of tomorrow’s intersex advocates. Inter/Act is a place for young people with intersex conditions or DSDs the world over to come together, express themselves, and unite their individual stories to develop a voice for a new generation. Inter/Act’s goal is for peers, parents, doctors, scholars, and supporters to gain a better understanding of the varied experiences and perspectives of young people with different bodies. Inter/Act presents the unique voices of members in the Inter/Act community. Inter/Act welcomes young people with intersex conditions/DSDs no matter how they identify.
How important is it for people born with intersex traits to represent themselves?
The right to self-determination and bodily autonomy has always been a political goal of the intersex community. The progress made toward winning these rights is largely a result of brave intersex individuals being public, speaking up, and demanding accountability from caregivers, policymakers, and other intersex activists. More to the point, no matter how someone born with an intersex trait identifies it is vital that parents of children with intersex traits see intersex adults taking responsibility for their own lives.
Do you think information about intersex traits should be part of sexual education? (For example, I rarely heard of intersex in college classes I took that discussed sexuality).
I was educated in the Louisiana public school system. I sat through the menstrual cycle film (flummoxed) with other girls in my 4th grade class. It wasn’t until the 8th grade, in a personal hygiene class, that we learned one of the harmful effects of marijuana usage is that one could give birth to a kid born with ambiguous genitals. Jump to my Human Sexuality class in college when intersex people were discussed and suffice to say more attention was given to which celebrities “were” or “were not.”
What would be revolutionary is telling students in sex education classes the truth. The groupings “XX, female, ovaries, uterus, vagina” and “XY, male, testes, penis” is just not accurate. It ain’t necessarily so. This is why when Advocates for Informed Choice gives presentations to almost any audience we always begin with “Everything You Learned In Sex Ed. Was Wrong.”
I recently read a guide for parents and physicians on DSD that stated: “One of the most important goals in developing a treatment plan for newborns with DSD is to have a child develop a gender identity that matches their upbringing” (Wisniewski et al. Disorders of Sex Development: A Guide for Parents and Physicians p. 50). What do you think about this statement?
We think that the most important goal in developing a treatment plan should be raising a healthy child who feels safe, loved, and accepted regardless of gender identity. Certainly, it is ideal when caregivers can correctly predict the child’s gender identity, but the reality is that some children with intersex conditions will not grow up as predicted. Caregivers need to be prepared to support the child regardless.
And, now, for the first time, young people born with intersex traits have a platform. This program helps them to speak directly to their doctors about how they experience treatment. Inter/Act allows young people a safe place to voice the complicated emotions that can come with being born with an intersex condition. These young people can safely express their concerns, fear, hope and anger. For these reasons alone What We Wish Our Doctors Knew is revolutionary. AIC and Inter/Act believe this document will serve to advance the dialogue between young people, parents, medical providers and activists, and we're sharing it with you.
With regard to reproductive rights, what would you like to see happen for people with DSD and intersex conditions in the future?
AIC’s goal has always been to protect the civil rights of kids born with variations sex anatomy and their families. AIC would like to see sterilization law be enforced to protect intersex kids, and we know that governments and international organizations are beginning to recognize normalizing surgeries and hormonal regimens on intersex kids as a human rights issue. AIC aims to see hospital policies put in place which protect the kids (from physical harm, unnecessary cosmetic surgeries, preserving their ability to choose for themselves in the future), the parents (fully informed consent, medical privacy, awareness of all of their rights as guardians in and out of the examination room) and the caregivers (the consequences of sterilizing a healthy child and reduce exposure to liability). Personally, I want to see the intersex/DSD/variations of sex anatomy/AIS/PAIS/Hypospadias/CAH/MRKH (and more!) community to remember how much we still have in common, how we are too small of a group to be as splintered as we have been in the past, and that while it isn’t necessary to speak with one voice it is vital each one be heard. ©
Do you think information about intersex traits should be part of sexual education? (For example, I rarely heard of intersex in college classes I took that discussed sexuality).
I was educated in the Louisiana public school system. I sat through the menstrual cycle film (flummoxed) with other girls in my 4th grade class. It wasn’t until the 8th grade, in a personal hygiene class, that we learned one of the harmful effects of marijuana usage is that one could give birth to a kid born with ambiguous genitals. Jump to my Human Sexuality class in college when intersex people were discussed and suffice to say more attention was given to which celebrities “were” or “were not.”
What would be revolutionary is telling students in sex education classes the truth. The groupings “XX, female, ovaries, uterus, vagina” and “XY, male, testes, penis” is just not accurate. It ain’t necessarily so. This is why when Advocates for Informed Choice gives presentations to almost any audience we always begin with “Everything You Learned In Sex Ed. Was Wrong.”
I recently read a guide for parents and physicians on DSD that stated: “One of the most important goals in developing a treatment plan for newborns with DSD is to have a child develop a gender identity that matches their upbringing” (Wisniewski et al. Disorders of Sex Development: A Guide for Parents and Physicians p. 50). What do you think about this statement?
We think that the most important goal in developing a treatment plan should be raising a healthy child who feels safe, loved, and accepted regardless of gender identity. Certainly, it is ideal when caregivers can correctly predict the child’s gender identity, but the reality is that some children with intersex conditions will not grow up as predicted. Caregivers need to be prepared to support the child regardless.
And, now, for the first time, young people born with intersex traits have a platform. This program helps them to speak directly to their doctors about how they experience treatment. Inter/Act allows young people a safe place to voice the complicated emotions that can come with being born with an intersex condition. These young people can safely express their concerns, fear, hope and anger. For these reasons alone What We Wish Our Doctors Knew is revolutionary. AIC and Inter/Act believe this document will serve to advance the dialogue between young people, parents, medical providers and activists, and we're sharing it with you.
With regard to reproductive rights, what would you like to see happen for people with DSD and intersex conditions in the future?
AIC’s goal has always been to protect the civil rights of kids born with variations sex anatomy and their families. AIC would like to see sterilization law be enforced to protect intersex kids, and we know that governments and international organizations are beginning to recognize normalizing surgeries and hormonal regimens on intersex kids as a human rights issue. AIC aims to see hospital policies put in place which protect the kids (from physical harm, unnecessary cosmetic surgeries, preserving their ability to choose for themselves in the future), the parents (fully informed consent, medical privacy, awareness of all of their rights as guardians in and out of the examination room) and the caregivers (the consequences of sterilizing a healthy child and reduce exposure to liability). Personally, I want to see the intersex/DSD/variations of sex anatomy/AIS/PAIS/Hypospadias/CAH/MRKH (and more!) community to remember how much we still have in common, how we are too small of a group to be as splintered as we have been in the past, and that while it isn’t necessary to speak with one voice it is vital each one be heard. ©
