Saturday October 26, 2013 is International Intersex Awareness Day (IAD).  This day marks the anniversary of the October 26, 1996 demonstration where activists and allies held a public demonstration demanding visibility and justice in Boston, where the American Academy of Pediatrics held its annual conference.

 

IAD has become an international day of grass-roots action to end shame, secrecy and unwanted genital cosmetic surgeries on children with intersex conditions or DSD.  As we approach the 17th anniversary of this important day of visibility AIC ‘s Executive Director would like to share some reflections on power and its impact on and within our lives*.

 

Today lets think about power. Power is what you can do as an individual or as a group.  As a community searching for healing, protection from unnecessary surgeries and reconciliation we have many allies and partners.

 

As an Intersex person or a person with a DSD, you have power. First of all, you have the power of survival. You have the power to tell your story.  When it’s the right time for you, your story can spread light where there has been ignorance and isolation.  And there are lots of places and lots of ways you can tell your story. Everyone knows someone who is intersex, but not everyone knows it.  Your stories have the power to change people’s hearts and minds.

 

As the parent of a child with a DSD, you have power. You have the awesome power to explain the world to your child in a way that puts them at the center of it, rather than positioning them as something “different” or “outside.”  You can teach about their body as part of the wonderful diversity of bodies.  You can teach them about options for making a family as part of learning about the many ways that love can form.

 

Knowing these things is more important for them than knowing what’s most common and where we all stand on some false scale of “normality.”  And when you get around to explaining what’s common or typical, preparing them for what the world expects to see, your best friends are the words “most” and “some.”  For example, we tell our kids that most people with XY chromosomes are boys, and some are girls – which is truer than what they will learn in biology class.  By the way, those words “most” and “some” are very useful words to add when you’re reading to your child.  You can edit their books to reflect their world.

 

Parents have the power to teach your children that their bodies belong to them.  You can encourage them to ask questions in the doctor’s. You can give them authority whenever possible to say “no.” (AAP statement on Assent, Consent, and Parental Permission).   And as they grow, you can give them access to accurate information about their bodies and sexuality, and good role models they can talk to – as you are doing at this conference.

 

As providers and allies to the intersex community, we have power.  We have the power to listen, to recognize the truth in our constituents’ stories, and to amplify their voices (For example, Inter/Act’s What We Wish Our Doctors Knew). We have the power to heal through apology.  Where our actions have led to another’s pain, even unintentionally, apology can begin the healing process. (For example, the Resolve Project). As professionals, we also have the power to encourage our institutions and professional organizations to take responsibility for the mistakes of the past.

 

As a community we have power. We have the power to bring comfort and peace to each other, and to find it for ourselves.  We have the power to help each other find answers and solutions.  We have the power to give hope to parents when no one else can offer them a vision of their child’s future.  We have the power to find the experts who can really help our community, and to learn from them.  We have the power to bring the experts together and teach them what we need them to know.  We have the power to create knowledge by participating in research that will benefit our community, to refuse to participate in research that won’t benefit our community, and to shape the questions researchers ask in the future.

 

No one can do all of these things.  But all of us together can make it happen.  Movement is what we can do when our collective power is unleashed.  This Intersex Awareness Day we ask you to think about the visibility and support of communities affected by Intersex and DSD conditions.  Building solidarity across identities is complex but crucial work.

 

We have the power to demonstrate, by the truth of our lives and the joy of this community, that a world of acceptance, compassion, and inclusion is better than a world of fear, shame, and secrecy.  We are creating that world every day.  We are making that road by walking it.

 

* Adapted from Anne Tamar-Mattis’s keynote address given July 2013, at the annual AIS-DSD Conference, Boston Massachusetts.