As this year is coming to a close, the intersex people of color movement has seen triumph and setback. M.C., a young Black intersex child whose genitals were mutilated by the state of South Carolina while in foster care, received a court victory
Pidgeon Pagonis is intersex, meaning that similar to one in 2000 people, they were born with sex characteristics not easily categorized as either male or female. This article critiques the Concealed Non-Consensual Surgery model (‘CNCS’) that dominates intersex treatment via illuminating discrepancies between the model, which Pagonis and others have endured, and the Hippocratic Oath. Instead of the current CNCS model, which has caused harm to so many, Pagonis offers alternatives that center on psychologists and support groups, instead of unnecessary surgeries.
originally posted no everydayfeminism.com
Dear intersex person trying to survive,
Growing up intersex – which is a reality for 0.5% – 1.7% of the population – is full of wonderful things! This can include getting lied to about your diagnosis, feeling different than everyone around you, and sometimes undergoing non-consensual “normalizing” surgeries!
What’s more, we often gain an expensive life-long dependency on the medical industrial complex because we’ve underwent unnecessary and non-consensual medical procedures that come with lifelong consequences (/sarcasm).
I was declared female at birth (DFAB) and doctors discovered early on that I had an intersex variation known as Partial Androgen Insensitivity Syndrome (PAIS). This meant that my sex chromosomes were 46 XY, I had two testes instead of ovaries, and my body was partially intolerant to “male” hormones.
Doctors intervened and tried to jam my non-binary body – which contained a mixture XY chromosomes, internal testes, labia, a clitoris, and a shallow blind ending vagina – back into the binary.
Surgeons lied to my parents and told them I would develop cancer if they weren’t allowed to remove my internal testes. After that procedure, they also removed my “enlarged” clitoris, and gave me a vaginoplasty when I was 11, so I could have normal sex with my future husband.
Combined, these interventions left me sad, angry, and confused. I found myself dependent on this country’s broken health care system in ways that were unsafe and financially devastating.
One glaring example of how intersex kids without adequate resources are continually made vulnerable, and then preyed upon by that same broken system, involves my prior search for an intersex knowledgeable endocrinologist.
When I turned 18, my Children’s hospital swiftly barred me from receiving services any longer. On the hunt for a new doctor, I encountered one who ended up taking advantage of my situation.
This doctor told me he needed to perform a pelvic exam before he could prescribe me the hormones I needed for my general well being and bone health.
He closed the door and put on a latex glove before inserting a finger inside of me to carry out his “pelvic exam.”
I clenched the crispy paper covering the exam table and cried as he performed the exam. Afterwards, he gave me some free samples of a testosterone gel, no prescription, and sent me on my way.
I later discovered that what he did was not only unnecessary, but possibly illegal.
After we turn 18, many intersex kids find themselves lost in the medical industrial complex. Sometimes, like in the example I just shared, we can continue to get hurt further by the system.
Unfortunately, I can’t go back and undo what the medical industrial complex did to me, but I can tell you part of my story and share the strategies I’ve found for wellness and healing.
I’m thirty years old now, and have about 10 years of experience under my belt of trying to navigate what often amounts to an expensive, and often triggering, world of medical care in this country.
The following is a list of free and/or affordable tips on making the process a little bit easier for you!
1. Getting Your Medical Records
Before you do anything on this list, try to get your hands on your medical records. You have two options, and neither are guaranteed – but it’s worth trying.
The first option is free, and involves making an appointment with a new doctor who you trust. Afterwards, contact your past doctor’s office and request they transfer all of your past medical records to your new physician.
Once your new doctor’s office receives a copy, request they make another copy for you to have.
Before reading your records, make sure you have reached out to someone you trust – like a therapist or a friend – and come up with a plan. You don’t want to be caught off guard while reading your records with no one to turn to.
There’s a catch with this free method. Since your medical provider will know what you’re up to, they’ll have an opportunity to modify your records.
For instance, if something in the records implicates them in something they’d rather you didn’t have knowledge about, that record could mysteriously vanish.
Alternatively (and this is sadly common), they may just end up telling you that the records are irretrievable. Many intersex people I know could not retrieve their records because they were mysteriously destroyed in a fire.
The second option costs money, but is generally the safer method for ensuring you receive all of your records.
To do this, contact the medical record division of your past hospital, and request that they personally make a copy of your medical records for you.
When I did this, the office charged a certain amount per photocopied page and the total came out to roughly $50. Coughing up $50 for what I believe to be my property was not only expensive, but also felt like a slap in the face.
Though, as far as I know, my medical providers were not alerted and I own a complete set of my medical records.
While some of the things I read in my records were stomach turning, the knowledge contained in them about my body – and what they did to it – has been critical for me.
2. Paying for That Doctor’s Appointment I Just Told You to Make
While our country still doesn’t fully recognize healthcare as a human right, we do have more options than ever before thanks to Obamacare.
Each state’s free Obamacare option, aka Medicaid, has different eligibility requirementsdepending on age, pregnancy status and income.
When I was choosing a Medicaid option, I made sure to choose a provider that covered my hormone prescription (Covaryx) because it’s the most necessary, and expensive, of my current prescriptions.
You can find out what medications are covered by browsing each provider’s formulary. Other things you might want to consider are the therapy and psychiatry stipulations, how much co-pays cost for doctor visits and prescriptions, and whether your current physician accepts that specific form of Medicaid.
To get this process started, regardless of whether your state has accepted or rejected Medicaid expansion, log on to healthcare.gov and make an account to check out your available options.
If you’re eligible for Medicaid, the website will let you know and you will receive a determination letter detailing your next steps.
Getting on Medicaid is wonderful because it will mean that you can most likely get your medications and doctors visits (sometimes even vision and dental) for free!
If you end up not eligible for Medicaid, and unable to get insurance from your employer, you can still use the same website to apply for what’s hopefully affordable coverage.
Pro tip: Start this process as soon as possible. It took me close to three months to get covered by Medicaid after I left my job last year.
3. Getting Set Up with a Primary Care Physician
After you get insured, make an appointment with an LGBTQIA+ friendly physician. A good place to start looking for one is by asking your friends on social media, or googling LGBTQ health centers in your neck of the woods.
If you don’t have access to an LGBTQIA+ friendly doctor, try and get a referral to any doctor from a friend or family member who you trust.
As a last resort, you can contact your insurance provider and search for a physician that’s nearby.
Pro tip: You can search the physician’s name on Google and look to see if they have any reviews. Yelp and Zocdoc can be helpful websites to search for reviews. Note, the majority of doctors on those sites usually don’t take Medicaid.
Or you can use RAD Remedy, which is like a queer Yelp for medical providers, to find a doctor that is sensitive to queer and intersex folks’ needs.
4. Getting Your Hormones
Once you’ve got your medical insurance and have found a doctor, you’ll want to make an appointment with them to discuss your hormone needs. There are over 20+ intersex variations, and each variation requires different care and medications.
This is where that insurance coverage comes in handy. Hormones, both estrogen and testosterone, come in many variations. You can try patches, pills, gels, creams, and injections, just to name a few.
Taking my hormones in pill form is what I’ve found works best for me, but you should figure out what works best for you.
As I mentioned earlier, Covaryx is the name of the medication I currently take, and it’s a small pill that contains 2.5 mg of estrogen and 1.5 mg of testosterone in each tablet.
Another option, especially if you have hella money or great insurance, is to get a specially formulated hormone supplement tailored for your body chemistry by a compound pharmacy.
5. What About Those Supplements Tho?
Many intersex people need calcium and magnesium supplements. These supplements help ensure that our bones stay nice and strong, since one of the leading causes of osteoporosis is a lack of hormones.
My Medicaid insurance provider covers free calcium and magnesium supplements.
You can check if yours does too by calling the number on your insurance card and asking.
If the answer is yes, then you just have to get your primary care physician to write you a prescription and pick them up afterwards at your pharmacy.
Pro tip: Pharmacies like Walgreens allow you to log in online and set up free mail delivery of your prescriptions. No more waiting in all those lines! Don’t have a Walgreens or CVS nearby? That’s okay, call your insurance up and ask them if they have a mail pharmacy service that you can use.
6. Speaking of Osteoporosis – Get a Bone Scan
If you do have an intersex variation that makes you susceptible to bone density complications, ask your primary care provider to write you a referral for a bone density scan.
Afterwards, consult with your doctor and figure out if you need to increase or decrease the amount of calcium and magnesium supplements and hormones that you’re taking.
7. Healing the Mind, Body, and Soul
This last set of tips are some of the most important.
As an intersex person, you’ve most likely experienced some form of trauma in your life. Many of us have gone through having part of our bodies taken away, being lied to about our bodies, and other traumatic experiences.
As such, it’s important that we have access to affordable healing options.
One method that’s been invaluable for me is free and sliding scale therapy.
You can also use the RAD Remedy website to find an LGBTQIA+ friendly therapist that’s recommended and reviewed by other queer and intersex people!
When you call a therapist to schedule an appointment, make sure to ask if they take your insurance. If they don’t, ask if they have a sliding-scale option.
If you took only one tip from this whole list, I hope it’s this one. Therapy can be so helpful for folks like us who’ve experienced trauma.
Yet, therapy isn’t always accessible or the best way to heal for everyone.
With that said, you can also use the RAD Remedy site to look up alternative healers who specialize in bodywork such as acupuncture, reiki, massage, etc.
Many people literally store trauma in the fibers of their muscles and fascia.
Some people find relief in the form of massage therapies such as cranial-sacral, rolfingand other techniques focused on releasing trauma and whole body alignment. Many intersex people I know swear by these techniques.
Unfortunately, it’s a lot harder to find free and low cost bodywork practitioners.
If you’re on a budget, ask if any of your friends are massage therapy or acupuncture students looking to fulfill their hour requirements — on you!
You can also look for healing spaces that offer sliding scale options. If you’re in Chicago, check out the amazing Chicago Women’s Health Center (they are very trans and intersex friendly!).
Another form of free therapy I take advantage of, especially when I don’t feel like leaving my house, is online yoga! Last winter, I found this Youtube channel and have found it to be really integral for mental, physical, and emotional well being.
White girl yoga not your thing? I know. Sadly, it’s hard to find other options on Youtube. But thankfully, there are projects like Black Girl in Om, which “creates space for women of color to breathe easy.”
If yoga is not your thing, be sure to check out recorded affirmations like this one on youtube. Try listening to affirmations every night before bed. I noticed negative thought patterns change almost instantly!
Or, you can also just find nice relaxing music with soothing visuals (yes, that’s a unicorn) and lay on your floor while trying to meditate.
Just lay there, hopefully in a dim room, and close your eyes (if that feels okay), and try to focus on taking long slow breaths.
Don’t forget that when all else fails, there’s always crying. Everyone usually feels better after a good cry. Pro tip: Try crying and then eating a delicious donut afterwards – it’s magical.
This list of tips focused on our wellbeing and healing is by no means exhaustive.
Remember that the only person we can control is ourselves. Life is short and we owe it to ourselves to live the best possible life with as much joy as possible!
While this is usually easier said than done, I hope this list can help kickstart you in the right direction.
I’m dying to know what your tips are. Please leave them in the comments! Happy healing <3
originally posted on everydayfeminism.com
Once during a video chat with another intersex person, I saw the word “Obama” scribbled on a white sheet of paper hanging up on the wall behind their head. When I asked them about it, they laughingly replied, “Oh, that’s my kill list.”
It was a joke she said. I didn’t see the humor. She was white.
Racism runs deep in this country, and as such, it’s present in white spaces such as my intersex community.
This article is my attempt at exploring the effects of whiteness, and it’s counterpart anti-Black racism, on the few Black folks in the intersex movement.
But how did I end up on a video chat like that, and now here writing an article like this? To answer that, let’s go back, way back to a time when I was 19 and at my first intersex support group for people with my particular intersex variation known as Androgen Insensitivity Syndrome, or AIS.
When I received my conference name badge, inscribed were the words “Women’s Support Group.” Not intersex. Not even AIS. Just, women.
I found that interesting since I had just discovered that people with AIS, like all of us at that conference, were born with XY chromosomes.
During the opening keynote, I looked around the room and saw almost all white faces.
Before the first session officially began, a person from our group hastily stood up and tightly shut the doors, while another volunteered to close the shutters.
Prior to attending, I spent most my life in hiding. In 5th grade, the reality sunk in that I wasn’t like the other kids. I had to go to the doctor every 6 months and take pills to go through puberty.
I was also made to feel different by the others because I was a mustached, hairy, flat chested, part-Mexican, no period having girl.
I became obsessed with normality. Unfortunately, I made the mistake of confusing normal with the white girls in school, and their white femininity, that I could never completely attain.
I attended the intersex conference to realize what it could feel like to finally stop hiding. Instead, our collective fear of someone finding out who, and what we really were, had me feeling trapped – again.
When I got home, I kept thinking about how heteronormative, white, and claustrophobic the space felt. Why were we so afraid to put the truth on our name badges? Perhaps like I — who in 5th grade hoped that white girl normality could save me — our group believed our salvation was found in assimilation.
If my (at the time) thin bodied, light-skinned, gender conforming, straight-passing, college student self felt uncomfortable, how would it feel to be Black and intersex in that all-white space?
To examine the impact of our movement’s whiteness, and give our movement an opportunity to reflect on the ways we may have inadvertently contributed to anti-blackness, I called up and interviewed two of my friends, who are Black intersex activists named Lynnell Stephani Long and Sean Saifa Wall.
I wanted to capture and present their experiences in order to assist us in thinking about ways we can become better comrades to Black intersex people in our community.
1. The Segregation in Our Intersex Movement Is Real
The intersex movement has been mostly white since day one. Consequently, it’s necessary to ask ourselves if we’ve inadvertently created an atmosphere that urges Black intersex people to put aside their Blackness — and the oppression linked to it — in order to focus on our collective goals.
In creating this type of environment, it appears our community hasn’t yet been able to connect the dots between Black and intersex people’s oppression — which Saifa reminded me are both rooted in state violence — and our liberation.
Black intersex folks who’ve lived in isolation and have dealt with segregation in their daily lives shouldn’t have to contend with similar experiences once they’ve finally found, and entered our community.
I’m not talking about highly visible institutionalized segregation like the Jim Crow era when Saifa’s uncle, who was also intersex, was forced to sleep outside on the porch of his hospital after a surgery.
I’m talking about the low-key, harder to detect, segregation.
The kind that just takes for granted that the majority of people in the room will always be white. The type that may have a few Black and Brown faces sprinkled here and there, but on a vanilla frosted cake. Is there a path forward?
Sean Saifa Wall, a Black trans intersex activist and collage artist based in Atlanta, reflected on this question by looking back on his time spent as the former board president of an intersex non-profit. Saifa captured why increasing representation shouldn’t be the endgame.
“I think I made the mistake of thinking we need more people of color… but what does institutionalized white supremacy do? It brings in Black or Brown faces who won’t challenge white supremacy — and that’s how white supremacy perpetuates itself. You don’t need white folks to perpetuate it, you just need folks who are invested in white supremacy.”
When I was younger and mistakenly believing that whiteness was the norm to strive towards, I ended up internalizing racist ideologies and, as a result, never fully connected on a truly deep BFF level with my Black friends. Perhaps our movement, and its longstanding quest for acceptance, has created a similar divide.
The global intersex activist network consists, to my knowledge, of less than only 5 Black intersex activists. One of them is Saifa.
2. One’s Race and Intersex Identity Overlap
Born amidst racist flames that attempted to level his neighborhood, Saifa was brought up whilst his borough, The Bronx, was attempting to rebuild itself.
“When I was younger,” Saifa recounted, “I realized I had a different body. Then, due to interactions with NYPD, I was made to know that I was different in another way as well.”
As he got older, Saifa came out as queer, intersex, and trans to a mother — and a world — who wasn’t always ready or eager to respect his intersecting identities. Regardless, his Blackness, sexuality, and intersex identity were always interwoven.
“I cannot separate my intersex identity from my Black identity,” Saifa said. And he shouldn’t have to.
Unfortunately, I’m afraid our community hasn’t figured out ways yet to allow people to show up as their whole selves.
For instance, on the international level, it’s become a known issue that intersex activists from African countries don’t get similar amounts of representation, or speaking time at gatherings. And nationally, our support group meetings rarely, if ever, have been led by Black intersex folks or had sessions dedicated solely for Black intersex community members to come together.
It’s only in the past few years that single Black folks are sitting on boards, or in staff positions of our organizations. There’s also never been, to my knowledge, any Black clinicians present at our Continuing Medical Education (CME) sessions that happen before our support group conferences each year.
Race, especially as it relates to anti-blackness, feels as though it’s at times an elephant in the room.
For me, this elephant peeped its head out when I realized it had become a tradition for one of our non-Black community members, who I love and cherish dearly, to sing Macy Gray’s “I Try” — in Gray’s uniquely raspy voice — at the annual talent show, which is supposed to provide a fun contrast to the rest of the conference.
The audience, if it’s a diverse year, might have a handful of Black folks. This year, there was only one person. I can’t imagine how isolating that experience might have been for them.
And this bring me back to the story I shared at the beginning, about the person who had Obama on a hit list.
Often, racism perpetuates itself by wearing the mask of a “joke” or “fun,” but racism is never a joke and the mask just presents one more hurdle in calling racism out.
It’s time us non-Black intersex people become more aware of our whiteness problem.
We need to keep having difficult conversations about race and oppression every step of the way.
Most importantly, we need to show up the few Black intersex people we do have in our small community, and check in with them to see if there’s anything else we could be doing to have their back.
We can challenge white supremacy in our movement just by asking Black intersex folks in our community what they need to feel safer in our collective spaces.
For our movement to be successful, it’s imperative that Black intersex folks feels they can participate as whole persons.
3. We’ve All Been Dehumanized
The list of atrocities against people of color, especially Black folks, carried out by the medical industrial complex and other agents includes: “the father of gynecology” using enslaved Black people as surgical research subjects, being disproportionately targeted by the US’s eugenic sterilization program that served as a catalyst for Nazi Germany’s and today’s “population control” policies, and the shackling of pregnant women inmates — who are disproportionately Black — in labor delivering children whom they most likely will be immediately separated from.
Likewise, intersex people have been rendered hermaphrodites and featured in freak shows, gawked at as monsters to at on TV, disproportionately put up for adoption, pumped with artificial hormones, robbed of their reproductive organs and genitalia, selectively aborted, raped, and brutally murdered.
Lynnell, a Black intersex lesbian activist, was born intersex but raised male by a single mother in a low-income household. She grew up in Chicago’s mostly Black, hypersegregated, South Side where her family — unlike mine on the North Side — was forced to deal with the effects of the city’s racist public policy and divestment responsible for the destruction of local economies, public schools and affordable housing.
Hyde Park, a pocket of wealth and whiteness on the South Side and home to the University of Chicago (UofC) Hospital, is where Lynnell’s mother took her as a child for doctor appointments.
Lynnell shared memories of that time stating, “My mom wasn’t given the tools she needed to make informed decisions.” As Lynnell grew older, she also “wasn’t taken seriously at first by [her doctors] either.”
Low-income and single mothers of color, labelled unfit by society, experience discrimination. Lynnell’s mother went to U of C seeking care, not charity, for her child. Seeing a golden opportunity, Lynnell’s doctors manipulated her mother’s financial status and turned the situation into a charity case anyway.
“They told my mom they were doing her a favor because they weren’t charging her.” In the doctor’s mind, they were participating in an equal trade with Lynnell and her mother.
To Lynnell, it was torture. “For eight years, every summer, for at least a month, I was put on different drugs, experimented on, given unnecessary procedures and manipulated.”
Exploitation of marginalized people by the MIC for their gains, especially in teaching environments, has been well-documented. Exploitation specific to Black intersex patients has yet to be researched. Lynnell’s doctors, I imagine, took one look at Lynnell’s mother and decided a poor Black woman wasn’t powerful enough stop what they had in store for Lynnell.
“I don’t know many white people that were used as guinea pigs like me,” Lynnell said.
4. Doctor’s Aren’t the Only People Attempting to Erase ‘Difference’
Intersex people are pretty familiar with secrecy, shame and stigma thanks to the pathologization of our bodies. As such, it’s important we have spaces to process our stories with each other. Yet, it’s important to note that as oppressed people, we are still capable of participating in the oppressing others.
The few times I’ve witnessed our community attempt to break down white supremacy and talk about racism, white intersex people successfully shifted the conversation, almost immediately, back to a conversation that centers them and their experience with intersex oppression.
Spaces where intersex people get together and talk are rare, so it makes sense why someone would want to relate and process, but in doing so, we are inadvertently preventing Black intersex folks in our community from expressing their unique experiences.
Saifa recounted a time when he “was trying to bring up the topics of anti-oppression, racism, etc., in the movement and people lost their damn minds. People were like, ‘we cannot hear it.’”
He also shared, “Anti-black racism showed up when I went to South Carolina on behalf of the MC case [a lawsuit involving the parents of a young Black intersex boy and his doctors] and one of the lawyers was condescending, talking down to me as the only Black person in the room. I was constantly pushing back against his patriarchy and racism.”
He continued, “I feel like people don’t care about issues related to anti-black racism in the intersex community.
“I think there’s some intersex people who really see those intersections, who really are affirming of people of color, but for the large part I feel that the level of anti-black racism awareness ranges from hostility to apathy.”
I asked if people ever seemed to care and he replied, “When funding is involved. That’s when people start to care more. Or, when a group wants some representation of diversity—but I found they wanted a Black face, but weren’t necessarily committed to issues around anti-Black racism.”
As a movement, we can’t only focus on these issues when funding dollars are at stake. That tokenizes Black folks.
Instead, we have to stitch anti-Black racism training, and education around white supremacy, into the fabric of our work together.
Saifa pointed out, “In the world, I’m confronted with anti-Blackness, and it’s par for the course, but it’s particularly more devastating when it’s from intersex people. Why? Because I think, ‘Oh, you understand.’
“Or at least I think they understand, until they say or do things that’s really racist and are unapologetic about their racism.”
5. We Need an Intersectional Analysis to Combat Racist Stereotypes
One of the white people present at Lynnell’s first intersex support group meeting recently told her that she was “afraid” of her at first, “because [Lynnell] had on leather and dark sunglasses.”
I asked Lynnell why she entered that support group meeting dressed in leather, sunglasses, and the rest of her leather daddy alter ego outfit. She responded, “Because I was the only Black intersex person there.”
Lynnell shouldn’t have to feel the need to protect herself like that in a room that was supposed to feel like home, a room where she was supposed to be able to let her guard down amongst people with similar experiences.
Unfortunately, this is the type of thing that can happen when a community doesn’t have a firm commitment to operating with an intersectional lens — one that places its most marginalized folks at the center.
Lynnell needed to protect herself at a support group, and in doing so, made a white person feel afraid, circles back to my main point.
We need to place Black intersex folks and their particular needs, struggles and desires at the front and center of our intersex activism.
If we don’t, we risk ostracizing Black intersex folks, again, within spaces meant to be a reprieve from shame and stigma.
6. Confronting White Supremacy Means Confronting Disembodiment
Disembodiment, or feeling detached from your body, often happens as a coping mechanism in response to intense trauma. Intersex activist, Mani Mitchell, once described it as feeling like a “floating head tugging around a body.”
Saifa, someone I admire for their commitment to somatic healing work, believes that white supremacy is rooted in disembodiment “because you have to be disembodied in order to not allow your self to be impacted by the inequity or suffering of others.”
Regardless, Saifa thinks it’s “imperative that white intersex activists feel their feelings regarding any shame they may have as they interrogate white supremacy and its brutal history.”
“It’s only fair that white intersex activists start to acknowledge, as much as their embodiment can hold, the shameful and disgusting emotions that come up after hearing the bitter truth and realities of Black folks and people of color.”
“Doing this work is difficult,” he acknowledged, “and it can bring up things we’d rather not have to face about ourselves.”
Still, non-Black intersex folks need to “confront those feelings and allow themselves to be impacted, then hopefully they can be motivated to action, and allow that empowerment to impact others.”
In taking Saifa’s advice, we can create positive ripple effects throughout our whole community. Doing the work to steer our movement towards becoming an intersectional, anti-racist, intersex movement is a win-win for everyone involved!
I fear our movement may have fallen into the trap of falsely believing that racism is a thing of the past.
While our struggles are not always the same, there are important overlaps to take into account, such as our joint history of exploitation by the MIC and discrimination based on how we were born.
Our movement could benefit from taking a deep hard look at our support groups, activist meetings, organizations, and other community and advocacy spaces, and ask ourselves what it means that our movement has attracted so few Black folks throughout the years.
The intersex community still says Black in a hushed voice. Ironic, since one of our movements best chances at seeing its goals realized hinges on the life of a young Black intersex child named MC. When his case wins, and he grows older, we need to have nurtured a movement and community that doesn’t ask him to be anyone other than who he is — and fully embraced as such.
That will be an even greater victory.
Originally posted on everydayfeminism.com
You all have some explaining to do.
You’ve told one lie after another to my family and me since I was three months old. And thanks to you all, I – like millions of other intersex folks – have been forced to live two lives.
A public persona who smiled and politely answered “no” each time you asked if I had any questions, and a private self who wallowed in teary-eyed questions.
My family, like most, had no reason to question your authority. I don’t fault them for that because I understand now that they were doing the best they could with a limited amount of misleading information you gave them.
Instead, I hold you professionals – sworn to the oath, first do no harm –accountable.
Regardless of whether you had pure intentions or “didn’t have the same amount of knowledge back then” doesn’t make your lies to my family and me any more excusable.
It would be one thing if you only lied to us, but I’ve since learned that lying is standardprocedure.
And this unacceptable protocol reverberated throughout our lives in ways that I feel compelled to illuminate.
If I could embed one intention into this letter, it would be to bestow a sense of humility upon you.
Many of our issues could be squashed if you just removed your expert hats long enough to pay attention to our stories with humility. The lack of leaders in your field vouching for what’s right after twenty-plus years of intersex activism is offensive.
If you support our movement than I urge you to come out in opposition of the dishonest and harmful protocol that has stained your profession for the past 65 years.
Don’t underestimate the power your unique position holds, which enables you to contribute in solidarity to our movement.
Recently, the UN stated that what happens to us in healthcare environments often amounts to human rights violations.
One clinician objected that the UN, educated by intersex activists, was “antagonizing” the medical community and ultimately would prevent them from “actually understanding what’s really going on.”
I’m sharing the following list of lies you told my family and me not to shame or “antagonize” you, but because I believe in the power of storytelling. And I have hopes that my story can help prevent you all from making similar mistakes.
Lie #1: You Were Born with Cancerous Ovaries
One of the first lies my mother told me was that I was born with cancerous ovaries and that they were removed in a life-saving post-birth operation.
You instructed my parents to tell me this made-up story, and it became a root in my development.
When I began asking questions about why I couldn’t get a period or have biological children, you told my mother to just stick to the cancer story – and she did.
Sad I wouldn’t be able to have kids, confused about the reason why, and scared the cancer would return, I began to retreat inward to a world of shameful silence.
Lie #2: Your Daughter’s Gonads Will Develop Cancer
You didn’t tell my parents the same lie.
Instead of telling them I was born with cancer, you hyped the risk that my “underdeveloped ovaries” which you decisively referred to as “gonads” – and really were my undescended testes – would likely develop cancer if left intact.
You noted in the records after my gonadectomy that the tissue samples came back negative and “no term other than gonad was used.”
This manipulative tactic meant to induce willingness in scared parents is a by-product of a culture that insists, sometimes by force, that humans only come in two polar opposite varieties.
Instead of removing my undescended testes and causing a life-long dependency on hormone replacement therapy (HRT), you could have instead been honest with us and offered to monitor them annually for signs of cancer.
I know a few other Androgen Insensitive (AIS) intersex folks who still have their testes, and they wouldn’t trade them for the world.
These types of decisions about our bodies belong to us and never to you.
Lie #3: We’re Just Going to Make Your Daughter’s Clitoris a Little Smaller
In 1991, when I was four years old, you wrote in my medical records that I “underwent a clitoral resection and recession without difficulty.”
The procedure was supposed to reduce, not completely remove, my clitoris – so I foolishly held on to hope that a remnant existed, and I would find and learn how to enjoy it. That day has yet to come.
I once asked my father if the doctors at least fabricated a lie about the procedure’s health benefits. His “no” reply weighed heavy on my eardrums.
Discovering I didn’t have a clitoris seemed like the last straw, and it was then I began succumbing to the belief that because I wasn’t whole, I had nothing to offer and wasn’t deserving of other people’s love.
It’s still a daily struggle to unlearn this nonsense.
Lie #4: No One Can Tell the Difference Between You and Any Other Woman
According to you, when I was eleven, I requested “further corrective surgery” and asked whether it was an appropriate time to begin “hormone replacement therapy.”
This is odd since at that time, I didn’t know what HRT was and my previous “corrective” surgeries had been deliberately hidden from me.
Nonetheless, days before my twelfth birthday, I was again on an operating table unknowingly undergoing a vaginoplasty which attempted to fashion a more suitable and passing vagina and vulva.
Afterwards, in appointments, you repeatedly mentioned – while peering between my legs – that “no one but a doctor would be able to tell the difference between you and any other woman” while advising me “it’s not anyone else’s business but you and your future husband’s.”
It was as if you had a manual on Dealing with Hermaphrodite Kids that instructed you to first get rid of all the confusing bits and then use a heteronormative hammer to pound out what was left.
Your approach left me ashamed and afraid to share my secret with anyone.
Lie #5: You’ll Have Normal Sex One Day
At least every six months, I was pulled out of school and driven to appointments where you stressed that I was normal.
“When you get married, you’ll be able to have normal sex with your husband with one small exception: After ejaculation, a lot more will leak out because you have a blind ending vagina.”
Nothing sounded more abnormal than a blind vagina that would leak like a faucet after sex with this “husband” you constantly invoked.
At school, friends started sharing stories about getting their periods. To fit in, I began sharing stories, too, while living in constant fear of someone asking me for a pad or tampon.
I also stopped taking my HRT with me on weekend softball trips and anywhere else someone might be able to see me taking it.
After the vaginoplasty shame prevented me from exploring that region of my body, it wasn’t until the first time I attempted to have “normal” sex with a boyfriend in high school that I learned just how wrong you were.
I’m not normal. No one is. And that’s okay.
Lie# 6: We Just Need to Take a Look
Once the pain from “normal” sex subsided after a few weeks, I waited for pleasure to arrive like one waits for a train that derailed miles before reaching their stop.
I went into denial in order to cope with the reality that sex equaled pain, and I was faking every second of it.
Disassociating after hearing the command “we just need to take a look”, before you lifted my shirt and pulled down my jeans, prepared me for when I also needed to escape my numb body during “normal” sex.
The way you took control of my body sometimes made it necessary to deny its existence in order to keep existing.
Lie #7: I Would Never Lie to You – You Can Trust Me
It’s hard to trust people when “safe” people like my parents and physicians lied to me.
When I was seventeen, you wrote that psychiatrically, I was “normal” and otherwise a “well developed young lady in no acute distress” who was “not yet sexually active.”
The reality was that my life was crashing all around me – and I was having sex, but I didn’t trust anyone enough to disclose that information.
In their quest to have me accept my assigned sex and gender, doctors focused on my body and ignored the emotional aspects of my development.
Instead, you should have been checking in on things that really matter in relationship-building – like whether or not I was able to share my emotions or establish trust with others.
You only had me see a therapist once.
I stared at the same curve in the wood grain of his desk not speaking or meeting his eyes for the entire session.
For future reference, this is usually what’s referred to as a red flag.
Lie #8: You’re One in a Million, Kid
Another lie you told me was that I would never meet anyone else like me because being born with cancer in my ovaries only happened once in a million births.
This “knowledge,” coupled with being terrified to tell anyone the truth about my non-existent period and vaginal surgery, only added to the isolation.
There’s a slippery slope between feeling alone and hating yourself made easier by growing up in a world that has no representation of your experience anywhere.
Thankfully, this isn’t the case any longer as I now know that between 0.05% and 1.7% of the population was born intersex. The upper estimate is similar to the percentage of people born with red hair!
Thanks to early intersex activism combined with the advent of the Internet, findingcommunity – while still challenging – is more possible than ever before.
Lie #9: We Did What We Thought Was Best for You at the Time
My mother once said, “If God came down to me and said, ‘You have one wish, what will it be?’ It would be to start all over again with you.”
If I could rewind life and start all over again, I would have instead replied “yes” when you asked if I had any questions.
I would have asked you things like: Is any of this even necessary? How do you know I’ll marry someone and it will be a man? Are there other ways to experience intimacy with partners that don’t necessitate a vaginoplasty? Why did you take away my clitoris?
Ultimately, I would ask for truth because I something tells me that working to accept the body I was born with would have been less traumatic then attempting to heal this fragmented one.
Hopefully it’s clear that my goal is not to “antagonize” nor to placate. Instead, it’s to hold you accountable while helping you recognize the injustice intersex people have suffered at your hands.
I’m asking you to go beyond doing no harm and join us in our movement to achieve the right to bodily autonomy for all – because as Sean Saifa Wall reminds us, “we will win.”
Intersex activists are carving the path every day, and you just have to decide if you’ll trek it with us.
Surreal. I'm just a kid from Chicago, albeit an intersex one, who was able to be recognized at the White House yesterday as a Champion of Change for my "work". I say "work" because what I do boils down to an act of committed love for my community. I get to wake up everyday and say to myself "what can I do today to improve the lives of intersex kids tomorrow?"--and that's a blessing.
I never in a million years could have imagined what took place yesterday right after finding out that I was intersex. The shame felt too much like quicksand then and all I could focus on was hiding amidst it. But thanks to AIC's (@aiclegal) ED Kimberly Zieselman, a friend and co-conspirator in the movement nominating me, I was able to state why intersex lives are valuable and in need of protection from the state during a White House live streamed event! ￼
What a difference 10 years and a whole lot of love and support can make! The day began with remarks from Senior Advisor to President Obama and fellow Chicagoan Valerie Jarrett (@vj44). Being around people from home when you're not home always makes you feel a bit more relaxed. Then she announced all 9 of us and paid tribute to our work and accomplishments.
Right after, the first panel began and I was lucky to be seated next to the moderator who was none other than Transparent's Alexandra Billings (@AlexSBillings) who's tender energy instantly soothed my nerves. Moderating always impresses me and she didn't disappoint. I'm always torn between stepping up and stepping back on panels and as my dad, who was able to be there with me and in the audience, said afterwards "you got off to a rocky start."
I had no prepared remarks but only knew I wanted to let people know what intersex meant and alert them to the human rights violations we suffer. I realized more than halfway in that I had almost forgotten my intentions. At that exact moment our moderator turned to me and shared that intersex wasn't a term that she was completely familiar with and asked if I could explain. It was as if she read my mind!
I took that opportunity to share that intersex is a term that describes people born with sex traits not typical for what our society commonly associates with male or female. Then I shared that we are as common as red heads which I think surprised a lot of people and then moved on to sharing that even the UN is labeling what happens to us as human rights violations and that it's time these abuses come to a halt. The audience seemed to have taken my message to heart which made me feel like my small mission during the panel was accomplished. In my closing remarks I shared that I believe that we deserve reparations and that we're not free until all of us are free especially those in our communities disproportionately affected by racism.
We are proud of the job Pidgeon Pagonis did in representing Intersex advocates today at the White House! Congrats again to Pidgeon and all the Intersex advocates whose work is reaching more and more people everyday!Posted by Advocates for Informed Choice on Monday, November 23, 2015
Before I knew it, the panel was over and then we heard remarks from Secretary Julían Castro and two more panels of amazing people including some of the cast and crew of hit show Transparent.
Jill Soloway (@jillsoloway), the show's writer, made wonderful comments about how she still feels nervous when making the transition from object to subject in her art. She also touched on reparations stating that white cis-gender straight males should be restricted from making media for at least 100 years in lieu of those who are so often rendered objects of their gaze (no pun intended ;) She also shared that the part in her show that's performed by Jeffrey Tambor (Arrested Development!) was inspired by her own family and gave a shot out to her "moppa" who was in the audience.
Jeffrey Tambor (@jeffreytambor) rocks! I made a digital story telling short-documentary a while back because I believe in the power story telling has to transform people and he mirrored this sentiment when he stated that "story telling saves lives" and as such it deserves to be funded!
At the close of the event I was tired, hungry and really needed to pee but I was envigorated by the outpouring of love and appreciation that people who came to speak with me shared. My heart swelled at that moment. I finally got to meet some twitter friends and allies like Kayley Whalen (@lenoregore) from the LGBT task force and others like a trans Vet who had a beautiful service dog with them due to being brutally attacked by fellow transphobia service members.
My father also had an opportunity to meet them and they told him I was lucky to have a dad like him who accepts and supports me. I know this made him feel appreciate. They weren't the only one to share that sentiment with my dad yesterday underlining the point made by fellow awardee & filmmaker Marco Castro-Bojorquez who urged us to approach LGBTQ youth homelessness as one would a public health crisis and shift our energy and resources towards prevention. "Families" he stated "are one of the most powerful and under utilized tools by the LGBT community that we have to combat this endemic with."
His point reminded me how lucky I am that the word family has many constantly evolving definitions in my life. It also brought me back to the sensation of being present in my body, at the White House, in a room full of inspiring people, a few inches in front of my dad who never rejected me for being intersex or queer. Like I said, I never could have imagined this moment ten years ago when I was choking on quicksand but having a loving and supportive family--in all the ways queer folks manifest out families--and community has helped me move mountains I previously perceived to be unmoveable.
My panel portion begins at minute 38:00
Hello! Intersex Awareness Day (IAD) 2015 is coming up soon on October 26th. I'm working with other intersex folks, activists, allies and organizations from all around the globe to promote the first-ever annual IAD Twitterstorm.
Discover how easy it is to support IAD by reading below or on pastebin.
Intersex Awareness Day (IAD) is and international event coming up on Monday, October 26th. Let's help the world stay woke to intersex people, our lives and our collective struggle for justice and bodily autonomy by all going on Twitter at the same time (a power-hour) and tweeting our intersex story, or that of a loved one, using the same hashtag #myintersexstory. The goal is to get our hashtag trending on IAD this year! Not intersex or don't know anyone who is? That's okay, you can help by re-tweeting and quoting tweets that catch your eye or that you support. And no matter who you are you can also tweet out why you believe people sharing #myintersexstory is an important step in attaining human rights for all people. Please tweet me @pidgejen or email me with any questions.
See you on Monday October 26th! (Don't have twitter? Sign up now--it's super easy!)
Oh and it just so happens that MTV's Faking It! starring the world's first intersex main character in a network sitcom will be airing the same night...So watch the new episode as you tweet along... And who knows, maybe even MTV will participate? ;)
From: Narrative Inquiry in Bioethics
Volume 5, Number 2, Summer 2015
pp. 103-106 | 10.1353/nib.2015.0053
My story is one of the threads woven into the tangled skein that is my family. At 23, my mother was straddling that bridge between youth and adulthood. I was her first child. Her younger brother had died tragically, and soon after, their father’s successful barbershops began to fall apart. I never met my uncle, but they say I’m his spitting image.
I was at my pediatrician’s office for my scheduled check–up. As the doctor’s eyes scanned my chubby squirming body, she paused when she reached the crevice between my thigh–rolls. She didn’t know quite what to make of what she saw. She scribbled a referral. “They’ll just take a look,” she told my mother.
When the doctor inspected my labia at the hospital, he knew almost with certainty what he was looking at but didn’t yet say anything to my mother. The data confirmed what my pediatrician feared: My chunky baby body appeared female on the outside but the blood tests suggested otherwise. When they were finished with their tests, the doctors sat my family down and gave them the news.
6/6/86—Informant: Mother and grandmother Immediate Complaint: Abnormal genitals Present Illness: Jennifer has been considered to be entirely well until exam last week by pediatrician who noted enlarged clitoris and small vaginal opening. Female Genitalia: Clitoral enlargement of 1.5 cm. Sex assignment as a female is entirely appropriate.
4/13/87—Dear Mr. & Mrs. Pagonis–I am attributing her elevated blood pressure to being somewhat fearful in our exam room. Admission date: 10/27/90 Discharge Date: 11/1/90 Attending Physician: Dr. B. Hospital Course: patient underwent a clitoral resection and recession without difficulty.
8/28/1997—Jennifer is an 11-year-old. She would like to have further corrective surgery and wanted to know if it was appropriate to start estrogen replacement at this time. Dr. F would like to do a perineal surgery to correct Jennifer’s problem with urination. At the same time, he is considering doing a vaginoplasty. We discussed with Jennifer the fact that her gonadal development was not normal as a fetus. For that reason as well, and the risk of developing cancer, her gonads were removed shortly after diagnosis. She was told she would not have periods and she would not be able to reproduce. We assured her that she would be able to have normal adult relationships. Jennifer agreed to start an estrogen therapy to increase breast tissue. Jennifer’s mom should go ahead and schedule corrective surgery as desired by Dr. F and herself.
When other girls asked me in adolescence, “Did you get your period?” I’d make up stories because I desperately wanted to be on that journey with them. This knot of lies was spun to cover up what my mother had explained to me when I was a child. “You had cancer in your ovaries when you were born,” she told me, “so the doctors needed to remove them. You won’t get a period like mommy or be able to have children.” I believed her.
Ten days before my twelfth birthday, my endocrinologist scheduled me for a surgery. The day of the surgery came and I was being prepared for anesthesia. The doctors came into the room to tell me what was going to happen next. “We noticed that your vagina is smaller than other girls’. While we’re in the operating room fixing your urethra, we can also make a small incision in your vagina to make it larger. This way, you’ll be able to have sex with your husband when you’re older—Does that sound good?” I looked at my mom, who was in the prep room with me for this and wondered how to answer. I was only 11. I let out a shameful, “Yes.” “Good then, we’ll get that all taken care of for you as well during this procedure.”
He turned to my mom and said, “We’re gonna take very good care of your daughter Mrs. Pagonis.” With that, he and his colleague left the room. I looked at my mom lost in thought. She noticed me and said, “Everything is going to be okay hun, trust me.” When I was finally in the operating room (OR), the lead surgeon told me to think of my favorite place in the whole world. “Did you think of your place?” he asked. I nodded. “Now think of Disney World and count backwards from 100.” I twirled down the steps of the Magic Kingdom as I fell into a manufactured sleep. When I woke, I was no longer a child.
A doctor and a group of residents came into my room. The doctor lifted my hospital gown, moved my sheets, coaxed my tense legs open, and examined the surgeon’s craftsmanship. My mom eventually came back to the room. She tried to move away the hair that was now stuck to the sweat that had beaded up on my forehead. “What’s wrong hun?” she asked me. “Nothing,” I said quietly.
3/6/1998—Record of operation - Preoperative Diagnosis: [blank] Postoperative Diagnosis: [blank] Operative Technique: The patient is a 12–year–old female who was noted to have a variant of male pseudo–hermaphroditism that is testicular feminization syndrome . . . after . . . obtaining informed consent, she was brought to the operating room. . . . Once it appeared that we had adequate size and this easily accepted an index finger, we then proceeded to perform our flap anastomoses.
When the time came to take a bath, I made the water as hot as I could tolerate and began the process of adjusting my body to the temperature of the water. With weak and shaky muscles, I began the lengthy process of settling in. Every movement was done in the most cautious way possible—it felt possible to split open.
I eventually slid down and let the warmth envelope me. I began to gain a sense of what they had done to me. I felt crunchy and raw. I could feel the ridges of stiches and soft flesh bulging between them. I was queasy, but I couldn’t help but touch the places where doctors had cut parts of me away. I removed my hand and returned it to the surface of the water and decided I would not return there.
I went through the rest of junior high and high school avoiding the questions and myself. I didn’t want to know. This worked until I began dating someone and we tried to have sex for the first time. My parents told me I was normal and my doctors told me no one could tell the difference between me and any other woman.
The first time we had sex, it wouldn’t go in. The second and third time was the same. Eventually, we were successful but it hurt. Real bad. I blamed myself. Shame and denial go hand–in–hand. During sex I would silently cuss out God and go through the ways one could kill one’s self. I did what the surgeon told me to do before surgery and went to some other place because trying to feel nothing felt like the only way out.
One day in the student center, of my university, I saw a group of students in the café. I knew I wanted to become friends with them. But I feared their rejection. I was so different from them. They, obviously queer, did not try to conform. Seeing my antithesis made me yearn to be amongst them—without even being certain what or who they were. Maybe John Money’s argument that plasticity lingered longer for intersex children was right. I left the student center without saying hello.
I didn’t know at that point that I was intersex. Dr. Money’s protocol was working. My diagnosis was a secret and I believed the lies they told me about the surgeries and even thought of myself as a cancer survivor. Sparked by the feminizing hormones I began taking in fifth grade, my sexual identity seemed “normal,” that is, heterosexual female, which satisfied my endocrinologists and family.
I appeared to be a success. I was the first person in my family to attend a university, was in a long–term relationship, and I had two decent jobs. Yet ever since junior high, I felt different. Just because no one told me the truth doesn’t mean I never felt the effects of their lies. In trying to protect me, they made me feel ashamed and isolated and the stress and trauma from those surgeries left lingering severe effects. As Dr. Bruce D. Perry said, “[Even] if you take all of your money and dedicate it to treatment you can’t build in things that didn’t grow in the first five years of life.”
While sitting in a Psychology of Women class the life they built for me teetered when the professor put up a PowerPoint slide, titled: “Androgen Insensitivity Syndrome [AIS].” Bullet points like infertility and amenorrhea, things I knew to be true about myself, were listed above a bullet point that stated women with this condition were genetically male and had XY chromosomes.
I called my mom and asked her, “Mom, what do I have?!” She opened some referral paperwork she just received from Children’s Hospital after I turned 18. “It says, An–dro–gen In–sen–sitivity” she managed to get out before I hung up the phone. I cried hysterically, alone in my dorm room bed, until I got online and did some research.
3/7/2000—We then spent most of the time speaking with Jennifer as she was told that she did not have ovaries or uterus or fallopian tubes and she would not have her menses and she would not be able to bear children. We did assure her that she did have a vaginal opening so she would be able to have sexual activity. It was explained to her that the vaginal opening ended in a blind pouch. Jennifer did not have any further questions at the end of our meeting.
I spent a lot of time online researching AIS. It didn’t take long to find an online support group. I found a community of folks with similar experiences. I realized that almost everyone had also been told they were born with “cancerous ovaries”! I learned this was a lie doctors told our families instead of telling them we were born with undescended testes. Almost all of us had our internal testes surgically removed without our consent. Without them, almost all of us were put on hormone replacement therapy to kick start our puberties. We almost all told similar lies to our friends in junior high and high school when asked the dreaded question—“When did you get your period?”
Some of us had other more unspeakable things done to us. A few weeks went by, and my Psychology of Women professor invited an intersex speaker to present. The speaker introduced herself as Lynnell Stephani Long and she was charming. I listened with a frozen gaze and tear filled eyes, while I tried to become invisible.
After class my professor—who I disclosed to a week prior—invited Lynnell and me to eat pizza. I told Lynnell parts of my story, the parts I knew from connecting the dots over the past few weeks, and then she asked me a question. “Have you said that you’re intersex yet?” she asked. I hadn’t. Intersex didn’t sound normal. “No” I replied. “It’s important to say it. Go ahead, say ‘I’m intersex.’”
I hesitated. I didn’t want to be different. I wanted to blend in. I wanted to be normal. I wanted to wake up from this bad dream. “I’m intersex,” I mumbled. “What? I can’t hear you,” Lynnell said with a smile. “I’m INTERSEX.” “There you go. Next step for you is to get your records.” I read about that on the support group. Many people told stories of lost records or records that were burned in a fire.
The first thing I read in my medical records was 46, XY male pseudo–hermaphrodite. My ears burned. I wanted to beat those words until they admitted they weren’t true. I called Lynnell in tears. She stayed on the phone with me while I read the rest. “Breathe,” she told me. “I’m here with you.” A few pages later I saw the documentation of my second surgery. It was 1990. I was four. Perry argues that children are most vulnerable to trauma during this period, when their brains develop 90% of their capacity. That’s the moment I realized that the reoccurring dream of waking up on a gurney with blood soaked gauze between my legs wasn’t just a nightmare but a memory.
I also learned that when I was 11 the surgeon did much more than work on my urethra. He constructed a crevice and hole that mimicked those in the pages of his textbooks—but didn’t look like a vagina. I hung up and made a promise to myself: I was never going to tell anyone else what I had just found out.
Soon after making that promise, I met a girl and fell in love. As she held me, I told her bits of my story each night and to my surprise she didn’t run away. She made it feel safe to tell others and in 2008, while presenting my undergraduate thesis, I told an audience which included members of my family. It was the first time I told them everything I knew. Our skein felt a little bit more complicated, but tighter that day.