Written and transcribed by Pidgeon Pagonis
All Photos (unless otherwise noted) are courtesy of Love & Struggle Photos
The Intersex Justice Project (IJP) and Houston Intersex Society (THIS) worked together last month to co-organize IJP’s second protest and rally outside of Ann & Robert H. Lurie Children’s Hospital in Chicago as part of our #EndIntersexSurgery campaign. Close to 100 people, 30+ of which were intersex, showed up to demand that Lurie become the first hospital in the United States to ban medically unnecessary “cosmetic/corrective” procedures on intersex children.
To be considered intersex means your body doesn’t play by our society’s binary rules when it comes to sex and gender--it’s a body that’s literally too cute to be binary. It’s an umbrella term for roughly two percent of the human population born with bodies, like mine, whose sex traits--chromosomes, gonads, and sex organs--don’t align with what is usually considered typically “female” or “male”.
You may not have heard about us because as Kyle Knight, Human Rights Watch researcher and co-author of the 2017 report “I Want to Be Like Nature Made Me”: Medically Unnecessary Surgeries on Intersex Children in the US, points out:
"One reason why we hear so little about intersex people is that doctors often perform surgery on them when they are still infants to make their bodies appear more unambiguously 'female' or 'male.'"
Doctors tell parents that these surgeries are necessary so we’re not bullied:
"Some physicians argue that these irreversible and medically unnecessary interventions make it easier for kids to grow up 'normal' and avoid bullying or harassment...But there is no evidence the surgeries deliver on that promise of 'fitting in,' and the results are often catastrophic—including nerve damage, incontinence, and sterilization."
This was IJP’s second protest at Lurie Children’s in the past 8 months. As a former patient of Lurie, I have suffered some of the consequences Knight mentioned and they’ve never apologized. What’s more, they are still advertising procedures that ostensibly will “help correct girls’ anatomy”--aka medically unnecessary clitoral reductions. We are focused on ending these procedures at one hospital right now in hopes of it having a domino effect.
IJP’s co-founder and I, Sean Saifa Wall, both had unnecessary surgeries done to us as young people after physician’s lied and coerced our parents. We operate from a praxis that seeks to create a future for intersex children where what happened to us, doesn’t happen to anyone else. We believe when surgeons, for instance--perform clitoral reductions, remove ones’ functional testes, or give a child a vaginoplasty-- they are violating intersex people’s human rights.
And we’re not alone, as Knight also points out, “medically unnecessary surgeries on intersex children have been condemned by the World Health Organization, three former US surgeons-general, Physicians for Human Rights, United Nations human rights experts, and pediatrics bodies” and most recently--the state of California!
IJP is calling for Lurie to end the surgeries which purposely happen when children are too young to consent. For close to 25 years, the intersex movement has been collectively struggling to bring an end to these injustices. According to interACT’s amazing #4intersex campaign, “every major human rights organization that has considered this issue…has concluded that surgeries should be postponed until the individual can participate in the decision-making process.” We agree!
The following is a recap of our most recent protest, followed by 5 ways you can get involved in our #EndIntersexSurgery campaign.
On July 18th IJP and THIS took to the streets. Our demands to Lurie are simple and include a public apology, a ban on surgery, and reparations. In short, we think Lurie should make history and become the first children’s hospital in the United States to stand up for intersex kids’ rights!
About 100 of us were gathered directly out front of Lurie’s front doors for over to 2 hours. It was so beautiful to see so many intersex people and allies—from toddlers to elders—all together and taking turns speaking their truth. We were even trending on Twitter thanks to people like Kehlani, Jill Soloway, Indya Moore and all of you for tweeting out #EndIntersexSurgery!
With close to 30 intersex people in attendance from all over the globe, this was perhaps the largest group of intersex people at a single protest in history.
IJP co-founder Sean Saifa Wall opened up the rally by saying, “We came to let Lurie know that Dr. Earl Cheng needs to stop these harmful surgeries on intersex kids. People came from Seattle, Austin, Milwaukee, Houston, Jersey, Iowa, Atlanta, San Francisco, Oregon, Kansas City, Pittsburgh, Brazil and even as far as New Zealand, to let people know that this needs to stop. We’re here to say we want to end the harmful ‘cosmetic’ surgeries that are affecting intersex children and their families happening here at Lurie Children’s Hospital.”
He then shared something that he wrote specifically for the rally titled We Rally Because…
We rally again in front of Lurie Children’s Hospital because one rally WAS NOT ENOUGH. We have patiently waited for years for doctors to acknowledge our humanity and in return they have pathologized us. We became human guinea pigs as they mutilated and sterilized our beautiful intersex bodies. We may be traumatized, ‘damaged’, and scarred, but above all we are tired. We are tired of waiting for our liberation to come and have decided to grab our destiny from those who took it away from us. Although intersex traits do not discriminate, society does. For those of us who are disabled, living with HIV, poor, Black, undocumented, migrant or immigrant, transgender and all of those laboring under white supremacy and capitalism, we know that we cannot wait for our oppressors to recognize our sovereignty and freedom. Although we have accepted funding for our pain and media recognition for our suffering, that does not take away accountability from the bastards that continue to do harm in the name of medicine. We demand justice. Our time is now. End Intersex Surgery.
As Saifa so beautifully stated, we protest because we want all children to have a choice when it comes to their beautiful bodies. After Saifa read his statement, he led us in a Fix Your Hearts, Not Our Parts! chant.
Koomah, co-founder of THIS and co-organizer of the protest, gave folks in attendance some intersex 101 and ended by stating,
The reason we are here, is because instead of allowing us to grow up and say I feel like a boy, a girl or something else, our bodies are surgically altered to be what society says a boy or girl should look like—and without our consent. These surgeries are painful, they cause scarring, urinary problems, sexual dysfunction, and they cause not just physical harm but emotional and psychological harm. They cause ongoing damage that exists into adulthood. A lot of time when we say these surgeries are harmful, we get pushback from doctors and medical providers that say there’s not enough data saying these surgeries are not best practice. Well, we are the data and we are saying: these surgeries are harmful, these surgeries are not best practices, [and] these surgeries are not patient centered. We have bodily autonomy and it’s taken away from us the minute that we are born and that is not okay. Our bodies are beautiful and they’re our bodies. My body does not belong to a surgeon, my body belongs to me and only I can decide what happens to my body and that’s the reason why we are here today.
After Koomah spoke, I spoke about my specific non-consensual surgery experiences at Lurie. I shared about the sterilization surgery that happened to me at age 1, the clitorectomy at age 4 and the vaginoplasty when I was 11. I ended by pleading with those inside the hospital to respect our lives and bodily autonomy. “Lurie do better,” I said. “It’s 2018 and you’re still doing the same surgeries on me that you did in the 1980s and 1990s.” Afterwards, I lead everyone in a chant: “Autonomy, not surgery… keep your scalpels off of me!”. All of us were chanting this as Lurie clinicians and patients walked by—many of who took our flyers.
Saifa then talked about the history of our #EndIntersexSurgery campaign, which began just 9 months prior on IAD. He said,
The amount of intersex people here today is amazing because there were literally only 4 of us out here last time. The fact that we’re here in front of this hospital today is momentous. And this lets us know that our movement is getting stronger. Our movement is not going to be taking shit. And we are going to stand up and protest. We can do this! So we’re here today to protest, and we know that these surgeries are still continuing at Lurie Children’s Hospital, and they’re even advertising it on their website... Dr. Earl Cheng has made a commitment to these surgeries and he’s not stopping. But I believe that we can stop it from happening. We can do this. We are doing it right now!
Saifa then handed the megaphone over to councilperson Betsy Driver. Betsy is an formidable intersex activist who started the Bodies Like Ours online forum in the early aughts and co-founded Intersex Awareness Day. Betsy also recently became the “first openly intersex candidate to ever win election in the United States.”
She said to those in attendance, “I noticed last year that in order to end it [surgery], we must have a seat at the table and I became the first out intersex person to be elected to public office in the United States...This is where change will happen, it will happen in state houses across the country. InterACT right now is making it happen in California [SRC-110]...And we’re going to do the same... But this can only happen if you get out and vote. Make your voice heard. Take your seat at the table.”
Saifa then led everyone in another chant, “Hey Hey, ho ho, intersex surgery has got to go!”
Hans, the communication director at interACT, spoke about current legislative efforts against intersex surgery. “The resolution in the works (SCR-110) represents the first possible legislation acknowledging intersex people and our rights in California. Make sure to follow the 4intersex.org campaign that has an education toolkit and on it you can sign up for updates about the resolution and its progress.”
After Hans spoke, the organizers unveiled a visual installation titled “Intersex Welcome Mat”. It was a large piece of rectangular canvas with 32 infant-sized diapers attached, each splayed open with a swash red paint representing the unnecessary genital surgeries performed on kids inside the hospital.
Koomah, the main architect behind the piece, stated, “These diapers are so tiny, when we were that small we weren’t able to speak and say no, but we can say no now and we are saying no now. We couldn’t say how harmful this was, and we’re saying it now. It’s not meant to be hung on a wall, but laid on the ground at the entrance. This is our welcome mat, this is the welcome that we got, this was our welcome into this world. We were said hello to with a scalpel. This is our visual reminder.”
After we unveiled the piece, and walked over to the front door of the hospital where we laid it on the ground, Saifa spoke into the megaphone,
This is blood on Lurie’s hands, the same blood that’s in these diapers of intersex children who’ve been mutilated...The accountability is on Lurie Children’s Hospital. They need to do better, and as long as they make a commitment to these surgeries, to this mutilation, this is what they’ll be reminded of. We have suffered enough, our time is now, and Lurie needs to end surgery. Let this be a reminder to Lurie of what is happening within its walls. Let Lurie be haunted in the same ways that we have been haunted. Let their staff know that this is not okay. That this has to end. That this has to stop. And as long as there are people who are not living with dignity, this [the #EndIntersexSurgery campaign] will not end. We deserve to live with peace, we deserve to live with dignity, and we do not deserve the chaos that we have experienced. Let this be a reminder to Lurie. Let them know, they can try to walk past, they can try to act like this isn’t happening, but it is. Let these diapers be a reminder that this must stop and it must stop today. Let them know! And because of the crimes happening at this hospital in the name of medicine, we will NOT pick up this installation, we will not be ashamed, and if they are ashamed then they can pick it the fuck up.
Everyone than repeatedly chanted, End Intersex Surgery! After that portion of the protest, I came back to the megaphone and spoke. This time, I specifically called out members of the Sex Development Program saying:
Dr. Earl Cheng refuses to even give us an incremental small change of just ending unnecessary clitoral reduction surgeries, there is no reason to give a child a clitoral reduction ever, and he refuses to change. But he’s dying out, and so are his kind and the future is going to be better for intersex people. And we know the people working at Lurie Children's on the Sex Development Program is better than doing unnecessary clitoral reductions on little kids. We know you’re better than that Jen [Leininger, Program Manager], Julie [Pesch] in the PR department, endocrinologist Courtney Finlayson, ethicist Joel Frader, you’re better than this… but as long as you let this happen it’s going on in your name too. It’s not just [Dr.] Cheng, it’s you as well and so this whole establishment is complicit, as long as they don’t stand up to the people in this hospital, like Dr. Earl Cheng, who are still doing clitoral reductions on people.
Saifa then spoke about how “unprecedented” this protest was just based on the fact that so many intersex people were taught growing up that they were extremely rare and wouldn’t meet other people like them—and there we were fighting together for intersex people's bodily autonomy.
He then spoke about how he was thankful his mom didn’t let the doctors do surgery on his genitals:
I’m grateful for the body I have, and I fight so others can be grateful for the bodies they were born with. This is elementary, this is not complex, what we’re saying is we just want to be left alone. What we’re asking for is a simple thing called sovereignty. We have a sovereign right to our own body. We are not wrong, monsters, diseased… we are as beautiful as the flowers that exist in nature. We deserve a chance to live, to be free, and as long as I’m alive I’m going to keep fighting so more people do not have to go under the scalpel unnecessarily.
The crowd then chanted End Intersex Surgery repeatedly again. Just as that round of chants ended, a Lurie employee exited the hospital and stopped to watch the protest and look at the installation. He then shouted, “I admire what you are doing. Please continue to speak up.” That’s exactly what we intend on doing.
Next up at the megaphone was Sam Knudtson, who spoke about the importance of not just ending surgeries, but also forced hormonal violations. He shared, “We’re violated not just with knives, but with hormones that we don’t consent to—that our parents are lied to about.” Sam then talked about shame, “Just last week I met a younger intersex person in my town, who also had surgery, and they had not told people they were intersex because of the level of shame. It’s up to us to end the secrecy as well as the surgeries!”
Then Suegee Tamar-Mattis, another veteran in the movement and a licensed physician, came up to speak stating, “These surgeries have to stop. As physicians, we can do better than this. This is a violation of human rights. And most of my colleagues think we stopped doing this years ago. I’ve been doing this work for twenty four years, and we have not made this stop. It is really past time. And my question to Earl Cheng is do you want to be the last person working on the Tuskegee experiments? Do you want to be known as the last person who is doing human rights violations? The light of history is on you right now, there’s still time to save your career, time to walk it back, time to make it stop.”
Then Suegee’s partner, Anne Tamar-Mattis—a lawyer who started InterACT— spoke. She said,
I’m not intersex but I’m here because I love someone who is intersex, and actually, I love a lot of people who are intersex [who]... had been hurt at the hands of doctors. And when I went to law school I decided that I was going to do something about it.... So I’m an attorney, and the founder of interACT, the world’s first organization that specializes in legal action on behalf of intersex human rights, and I want to tell you guys that what you’re doing is amazingly powerful. I can tell you that the doctors that do this are afraid of being sued. And some of them have been sued, and a lot more of them will be. There’s something else they’re afraid of… they’re afraid of intersex people getting together. That’s why they’ll tell you you’ll never find anyone like you. Doctors have taken purposeful action to keep intersex children away from other intersex children, and to keep parents away from other parents, and to keep this community from forming. They’re afraid of what happens when you get together. They’re afraid of what happens when you stand up. There’s nothing they’re more afraid of then a protest like this where you speak the truth in public. So keep doing what you’re doing and know you were helpless when this happened, but you’re not helpless now.
There were two points throughout the protest when young children walked up to the megaphone and spoke up. The first time was when these two young kids came up with a sign that read Intersex Babies Have Rights and stated, “End Intersex Surgery!”
And the second time, was when Rosie--a 5 year old intersex kid whose parents were pressured to consent to normalizing surgery but fought to leave her body intact--came up with her brother Silas and also chanted End Intersex Surgery!
In an ideal world, her parents wouldn’t even have had to fight the doctors, they would have just been told that they had a beautiful, healthy intersex baby and been connected to support groups. Sadly, this isn’t what happens yet but this is the future we envision and this is what we are fighting for.
Lots of other amazing people spoke, but in trying to keep this recap a readable length, I am unable to include their words here. Please watch the livestream video to see everyone who spoke and everything that went down. Please note, the phone died towards the end of the protest and so the last 20 to 30 minutes or so were not captured.
One of those things not captured was the closing ceremony. We closed by asking everyone to come together and form a large circle. Darien from For the People Artists Collective and Saifa lead us in one last chant--this time with words from Assata Shakur. We all held hands and chanted:
“It is our duty to fight for our freedom.
It is our duty to win.
We must love each other and support each other.
We have nothing to lose but our chains.”
If I learned anything from helping to organize these past two protests it’s this: protests are great vehicles for bringing people together and helping us recognize our power, but the work that will ultimately bring about the change we seek comes from people doing lots of small things repeatedly during the course of the ensuing campaign. Since the protest, many people have participated in our campaign by writing emails, calling, and tagging Lurie on social media and I’ve gotten word the hospital has taken notice.
One success we’ve already had with the campaign is that on a webpage that used to falt out state that one of the ways they “treat” itnersex kids was with “clitoral reduction surgery”, they’ve since changed their tune. It now states, “In some cases, surgical procedures may be considered. In the past, these procedures were sometimes done without consideration for the reversibility of the surgery or the patients’ future sexual function.” While this is still problematic, esepecially because there has not been a documented case of a surgery done on an intersex kids genitalia that has successfully been “reversed”, it at least signals that they are feeling the heat of our campaign. Yet, that’s just on *one* of their many web pages related to intersex, and on another page they still state that they “help correct girls’ anatomy.” In short, it’s working but we need everyone to keep up the pressure!
Our digital toolkit includes five ways you can get involved in our #EndIntersexSurgery campaign right now. It includes helpful tips and templates for tweeting, tagging, commenting, emailing and calling them. The toolkit includes samples posts, share graphics, email templates and phone scripts. What are you waiting for? Demand Lurie Children's #EndIntersexSurgery now!
Please join our mailing list for updates on the campaign, for a new ways you can get involved in the future. Also, If your organization would like to endorse our campaign, please get in touch with IJP via email and let us know so we can add you to our list of endorsers!