037: Tiffany & Alicia
In this episode, I’m joined by intersex advocate Alicia Roth Weigel to discuss her journey of coming out as intersex and increasing the visibility of the intersex community during Pride Month and beyond.
We discussed:
Alicia’s origin story of being born with XY chromosomes
What is intersex
What is happening in the intersex community
How Alicia learned she was intersex
How Alicia became an intersex advocate
Intersex and Pride Month
Intersex, disability, and intersectionality
Intersex community and belonging
Being an accomplice to the intersex community
Show notes:
LGBTQ+ Pride Month: https://www.whitehouse.gov/briefing-room/presidential-actions/2021/06/01/a-proclamation-on-lesbian-gay-bisexual-transgender-and-queer-pride-month-2021/
Complete androgen insensitivity syndrome (CAIS): https://en.wikipedia.org/wiki/Complete_androgen_insensitivity_syndrome
Alicia at SXSW: https://medium.com/@aliciarw/beyond-boxes-the-intersex-case-for-intersectionality-bf94e1836bc9
Model Hanne Gaby Odiele on What It Means to Be Intersex—And Why She's Going Public": https://www.vogue.com/article/hanne-gaby-odiele-model-intersex-interview
Alicia coming out as intersex: https://medium.com/deeds-not-words/putting-the-i-in-lgbtqia-a8cebf241d17
Intersex-inclusive Pride Progress flag: https://www.instagram.com/p/CP3nsx3lLtn/
Working definition of ableism: https://www.talilalewis.com/blog/january-2021-working-definition-of-ableism
World Report on Disability: https://www.who.int/disabilities/world_report/2011/accessible_en.pdf
Kiran Foster: https://www.instagram.com/p/CK6gZ7OF7Jb/
interAct Youth: https://interactadvocates.org/
Intersex Justice Project: https://www.intersexjusticeproject.org/
Intersex folks to follow on social media: https://www.instagram.com/p/CPlI-kVFsCb/
About Alicia Roth Weigel
Alicia Roth Weigel is a Forbes and New York Times published change agent, working to improve the political and social landscape for marginalized populations in the South through her consulting firm Intrepida Strategy. She serves on the City of Austin's Human Rights Commission, the Community Advisory Board for Texas Health Action (Kind Clinic) and the Health Equity Policy Council for Central Health—a taxing entity that provides healthcare to low income Central Texans. Alicia has contributed to municipal and statewide legislation to reduce sexual assault and human trafficking, mandate paid sick leave and abortion funding, decriminalize and alleviate homelessness, and target other social determinants of health. Most notably, Alicia continually advocates for the rights of intersex people like her, for which she was awarded the Ceci Gratias Guardian Award by the Austin LGBT Chamber of Commerce in 2019. Alicia is committed to fostering body autonomy and culturally competent healthcare for all.
Follow Alicia Roth Weigel
Website: https://www.xoxyalicia.com/
Instagram: https://www.instagram.com/xoxy_alicia/
Transcript
Tiffany Yu: Hi everyone. This is Tiffany. And you're listening to this episode of Tiffany & Yu. If you are new to the Tiffany & Yu podcast, Tiffany & Yu is a podcast about things that matter. And more specifically, I'm talking with friends who are using their platforms and voices to cultivate creativity, compassion, and change. So June is Pride Month. And I have the pleasure of being joined by a friend, Alicia Roth Weigel, who is a Human Rights Commissioner for the City of Austin and an intersex advocate. Hi Alicia.
Alicia Roth Weigel: Hi, what's up?
Tiffany Yu: I always start by sharing how I know my guests because we're all friends here. So we met because we have a mutual friend named Meghan and we spent New Year's together. And that was the first time that I had gotten more familiar with your work. I wanted to hear about your origin story, whatever that means to you.
Alicia Roth Weigel: That'll be a good way also to help folks conceptualize what intersex means because a lot of people have never heard that word before. To start at the very beginning, before I was even born, my mom was pregnant with me and my parents got into a car crash. And so they went to the hospital to check and make sure that the crash had not terminated the pregnancy. And they did a test on my mom that's called an amniocentesis. It's sort of like an ultrasound, but it uses a needle so they can get more information than they would be able to through the ultrasound technology. And that amniocentesis test told my parents that I had XY chromosomes. Now, most people associate XY chromosomes with the male, and actually, we'll get into later that it's not quite that simple. But at the time, once the amniocentesis test told my parents that I had XY chromosomes, they basically were preparing to have a baby boy. So they painted the nursery blue. They told everyone to buy gifts for a little boy. They had picked out the name, Charles, which was my grandfather's name on both sides, maternal and paternal grandfather, as well as my father's name. So I guess I would have been Charles the fourth and then everyone was surprised when I came out of the womb when I was born with a vagina. And they had not picked out any quote-unquote girls' names. I don't believe names should have a gender associated with them, but at the time they had not thought about any names kind of femme type names. And so, as the story goes, apparently my dad in the corner of the room said, yeah, we could name her Alicia, because that was the name of that hurricane that hit Houston when we were living in Texas in the eighties. And I always really liked that name. So I'm actually named after a hurricane, which is one telling thing if you know me. And I also am named after a phenomenon in Texas, which is just weird that for most of my life, I grew up in the Northeast or on the West Coast. I've lived in Latin America, in Sub-Saharan Africa. Never would have thought I ended up here in Texas. And yet lo and behold, when I turned 26, ended up here and truly ended up finding myself and my purpose. So now Texas is my home. So it's kind of this weird foreshadowing that I was originally named after a hurricane that hit Texas and as my old boss and former Texas State Senator Wendy Davis used to say, hurricane Alicia has come back to Texas and hopefully not to destroy lives this time. That's kind of my origin story and to backtrack again to the delivery room, they knew that I had XY chromosomes when I was born, and yet they knew that I had a vagina. For most people, you're not even aware of what your chromosomes are when you're born. Most people may live their entire lives not knowing what their chromosomes are. It's not like a normal test unless there's some discrepancy from the norm that leads doctors to perform a chromosomal test. So the fact that my parents had gotten in that car crash and they did that amniocentesis meant that they, my parents, knew that I was intersex from when I was born, which is not always the case. And to just define what the word intersex means for folks, intersex is an umbrella term that refers to a wide variety of people that have biological, physical sex traits that fall somewhere on the spectrum between what we consider to be male and female. These binary boxes that aren't really as simple as we've been taught to believe. So by sex traits, I mean, anything from externally visible genitalia to internal reproductive organs, uterus, ovaries, testes, there's actually a wide mixture of all of those. And then things that we don't see, but that control the way that our bodies express our sex traits, so things like chromosomes and hormones. So for me, I had XY chromosomes, but also am what is called complete androgen insensitive. So it can have what doctors like to call complete androgen insensitivity, CAIS. And that means that although I was born with XY chromosomes, I was insensitive to androgen hormones in the womb. Androgen hormones are what people like to think of as like masculinizing hormones or things that would masculinize someone. And so I had XY chromosomes, but I didn't respond to any of those masculinizing hormones. And so when I was born, I looked what a lot of people would characterize as female. The thing is it’s kind of harmful to say, oh, she had male chromosomes, but then female anatomy, because my body's existence, the fact that I was born with internal testes and a vagina shows that anatomy doesn't actually have as sex or gender associated with it. Like any trait that exists in the world, humans exist on a spectrum. And for me, I was born somewhere between the sexes between male and female, hence the word intersex. And so rather than saying, She had male chromosomes, but female external anatomy and male reproductive organs. As an intersex community, we like to say, okay, so she had a vagina, she had testes, she had XY chromosomes. We talk about things from a very anatomical standpoint without trying to unnecessarily gender those things, because then what happens is, although I was born in between, birth certificates only give two options in the US. They give M or F, male or female. And so, because my existence is kind of suppressed from that very first decision a parent makes, which is what box does my kid fit into on a birth certificate, then that forces this pathway that then normalizes intersex bodies into one of those categories that society is comfortable with. So, because I didn't fit neatly into those categories, but because of my genitalia looking more quote-unquote female, the doctors decided that they were going to make me a girl. And they always talk about for intersex kids, how it's easier to push an intersex kid into the female direction than it is the male direction. For me, what that meant was removing my testes. So I was sterilized. I was essentially castrated. They took my testes without asking me as an infant. So for me, it was removing something internal that they viewed as like an aberration from the male and female binary. For a lot of intersex kids who might be born with genitalia that might be somewhere in between, or that doesn't fall into those neat categories, what a lot of doctors say is it's easier to dig a hole than it is to build a pole. And what they mean by that is it's easier to create of vagina than it is to create a penis. And so they default by pushing intersex kids into being little girls while we're so young that we have no say in anything going on. We have no consent or no autonomy in that process. And so what oftentimes ends up happening is that those decisions end up being counter to what the person would have actually wanted for themselves. For me, they took away my ability to choose when and whether to have children because they sterilized me, which we can talk about later, eugenics and sterilization of folks with disabilities and so many populations throughout the world that are not deemed as normal by society's categorization. For a lot of intersex kids, they'll pick based on their genitalia. They'll say, okay, we're going to make this kid a girl, because it's easier for us to make female genitalia. And then what happens for some of my intersex friends, they grow up and they're like, Hey, I identify as male, no one ever asked me. And so now I'm trapped in this body that doctors created for me without my consent. And then they have to transition later in life already having had these life-altering irreversible surgeries done on their bodies that were never medically necessary in the first place, that were purely cosmetic, and to support the comfort of families and folks that have to be around these intersex kids. Pride Month is a really good time to have these conversations because there is so little visibility for intersex people or that I in the LGBTQIA acronym. And so I really appreciate you having me here on the podcast to talk about it and help raise some awareness of what's happening to our bodies.
Tiffany Yu: I'm curious about this journey of when you first discovered you were intersex because I know that part of what ultimately led you to South by Southwest, and a lot of this advocacy work is trying to advocate for these procedures that are done on children without their consent. When did your parents tell you? How did you navigate that?
Alicia Roth Weigel: That's a really complicated question for a lot of intersex people because a lot of times intersex folks were born into families who might've been ashamed that their kids were intersex and intervened really early. And by intervened, I mean, performed these life-altering procedures without the child's consent. And oftentimes don't even tell the child because they're so ashamed or perhaps they want to quote-unquote protect the child from this information that could make them uncomfortable or have questions. And so it's not abnormal to hear of intersex folks who didn't even find out they were intersex until much later in life. And perhaps they had some other unrelated medical issue and they went to a doctor and the doctor reviewed their medical records and said, Hey, what was this surgery about when you were a kid? And intersex person will say, what surgery? I didn't know there was a surgery or something like that. And so there's a wide range. I want to make it very clear that when I speak as an intersex person, I speak for my experience, but there's a wide range of experiences within the intersex community. For me, I found out pretty young because I was lucky that I was born into a family where my mom was actually a nurse practitioner. She was a medical professional herself. And so she had a lot more capacity to understand what was going on than a lot of parents would. But for my parents, the way that everything was framed to them is, your daughter has internal testes. These testes could become cancerous one day. And so we should remove them when she's super young, too young to remember the surgery, to avoid unnecessary trauma, whatever. So what you'll find out after from medical studies that continually come out. I'm now 31 years old. So of course, medicine advances light-years every decade. We know a lot more now than we did then. But when you look at the studies, the chances of someone with complete androgen insensitivity like me to actually get testicular cancer are only 5%. And so because of a 5% chance that I might get cancer at some point in my life, they decided that it would be good to intervene on me and remove part of my body that not only determined my ability when and whether to have children, but these were my hormone-producing organs. So they would have produced actually testosterone that because my body does not respond to testosterone, because I don't respond to androgen hormones, my body would have converted it to estrogen naturally. It's kind of like a superpower that I have as an intersex person. And my body would have developed naturally. My testes would've produced hormones, my body would have absorbed them in the way that my body is able to. And I would have developed naturally as a human being, but then removing those organs essentially put me into, for lack of a better word, menopause as a child, because when you think of someone going through menopause as an adult, it's because their hormone levels start to decrease. Their body stops producing the amount of hormones that they've been used to for very many years. For my body, they removed these organs. And so my body basically was at ground zero, was not producing certain hormones from when I was a kid. And similar things that you think about with menopause, like mental fog, hot flashes, depression, lack of clarity, all these things, I experienced as a child. And also one thing that happens when people go through menopause, and I'm careful to say people, cause it's not just women. Menopause happens regardless of gender. It just has to do with which anatomy you're born with. When people go through menopause, they often will have to take calcium or supplemental vitamins and minerals because when your hormones get affected, that it also affects your bone density. And so with intersex kids, when they remove our hormone-producing organs, that also affects our bone density. And oftentimes decisions are made about which hormones to give us based on what they want us to look like, how they want us to appear up here, male or female, not necessarily based on what our bodies need to be healthy. And so you'll often find intersex people ending up with osteoporosis in their early twenties. And usually, you think of osteoporosis as something people in their eighties, maybe seventies or eighties, when they're much older, but a lot of intersex people end up with that because of interventions that were done by doctors when we were infants or young children. Your original question was when did I find out that I was intersex? My parents and doctors decided to do these procedures on me to quote-unquote avoid cancer. So, if you think about my parents, they heard from doctors, I might get cancer. Of course, they're going to want to do whatever they can to avoid cancer one day. But then they ended up telling me very young. They never used the word intersex and we'll dive into that. But they ended up telling me very young that I was different, that I had a disorder that I had a problem that was being fixed. Because for them, the decisions they had made were to try to keep me safe. It wasn't based on them necessarily being ashamed of me or wanting to whatever. I don't remember exactly how old I was, but I knew from when I was very, very young that I was unable to have children and that I had this disorder called complete androgen insensitivity, but that I was being fixed. And I remember going to doctors when I was young, like a kid, and having them tell me, don't worry, we're going to make you a very normal girl. And we're going to make sure that you find a good husband one day. We'll make sure that you look totally normal and that your body functions in this normal way. And so when you keep hearing normal, it's like, what they mean is cis heteronormative, that you fit into these binary gender categories so that you can have this heterosexual relationship one day. And so for me, I knew since I was very young, but it wasn't that I knew I was intersex. It wasn't that I knew I was born different, like almost 2% of the population. And that I was born in between and that it's this really cool, unique thing. And that I should connect with other intersex people because there's this huge community out there people like me who were born this way. The way I always heard about it was, you're born with a problem, it's being fixed. Don't tell anyone about it because you'll be made fun of, and you'll never find a good husband one day if people know that you were born with balls or that you have XY chromosomes, or that you don't fit into these neat little gender norms. So for me, I knew since I was young, but I didn't know in a positive way. I knew in that there was some issue that I should never talk to anyone about and that I should create this alter ego or create this whole identity so that no one would ever find out. So when my girlfriends started getting their periods in middle school and talking about that, that was an experience I was never going to have. So I started lying about it and I started carrying around tampons so that if anyone ever asks me for a tampon, I wouldn't look weird or abnormal. And whenever I would date in the past and I would get to a certain level of seriousness in a relationship, I would end up telling my ex at the time, I can't have your children. I'm infertile. I would never tell them, I was born intersex, and this is what my life experience looked like as a kid and so on and so forth because there was so much baked in stigma and shame around just my very existence that I developed these really convenient ways to hide that existence. And what it meant is that my whole life, I felt like I could never reach true intimacy with friends or even my brother. My brother didn't know any of these things because I could never really share who I was with the world. And that led to this whole host of other issues, of what comes out of leading an entire life of feeling like your existence is a problem and shameful, and that you need to lie about it and hide it, which a lot of the queer community can probably identify with. And so when I ended up really coming out, it's because I had moved to Texas, I was working for a nonprofit where we trained young activists, high school and college-age activists, on how to share their story to heal themselves and to help others by helping generate social change on a wide variety of issues. But at the time we were mainly focused on sexual assault because a lot of young people, unfortunately, have either been sexually assaulted themselves or know someone who has, so that was the issue we were focusing on. I'm also a sexual assault survivor. And so I would kind of share my story in that regard to help these young folks learn how to raise their voice for what they cared about. And yet I would urge them to be vulnerable and dig deep and really come clean as who they are because it would heal them. And yet there was this huge piece of myself that I was not coming clean about and that I was not sharing with the world. And so I ended up feeling like a big hypocrite and I didn't like that feeling of feeling like I wasn't practicing what I was preaching. And so that was kind of pushing me in the direction of maybe wanting to start sharing who I was. Soon after that, I read an article in Vogue magazine about a model who was born intersex. Her name is Hanne Gaby Odiele. She's now a friend of mine, super bad-ass. They had come out as a model because they have a huge platform and wanted their story to be heard. And when I was reading this story, I was like, this story sounds so much like mine, and yet Hanne was using this word intersex that I had never even heard before because I had been told that I had complete androgen insensitivity. It was a disorder of sex development, and I never even heard this word intersex and I'm 27 at this point. And so I go down this Google rabbit hole of like, oh my gosh, intersex, like I'm intersex. There's all these intersex people out there. Almost 2% of the world is born intersex. The same percent of the world is intersex as has red hair. That's crazy. I never knew. I always grew up my whole life feeling so alone and isolated and all of a sudden it opened up this whole community and understanding that, wow, there's a lot of people like me. So that gave me the courage then to start sharing my story. And soon after I read the Hanne's story, then this unfortunate incident happened here in Texas, where our Lieutenant governor tried to pass what we call the bathroom bill, which would have forced trans people to use a restroom that aligns with the biological sex on their birth certificate, which besides being unenforceable, I mean, who carries around their birth certificate with them? I don't even know where mine is, in some safe deposit box somewhere. But it's really discriminatory and there's all these other issues obviously. But what I kept hearing these senators talking about trying to pass this bill is they would say biological sex is cut and dry and so once we go back to that, then all these trans perverts will go back where they came from or whatever. And I just wanted to tell them like, biological sex is not cut and dry. People like me exist. There's a lot of us around the world. If we extrapolate 1.7% of the world's population, that's like 150 million people. That's half the size of the United States that is born and exists in this world as intersex. And so if you want to try to pass discriminatory legislation, at least open a biology textbook first, like you're basing this on completely false science, which we know discrimination is never based on science or logic or fact. It's just discriminatory. But that was my kind of kick in the pants to really share my story of being like, Hey, my existence proves that this legislation is wrong. And so I ended up coming out for the first time in front of the Texas Senate, in a Senate hearing to help kill that bill. And then there was news coverage of that. And so the way I came out to my friends and family, it was like, I sent them news links and I was like, Hey, there's something about me you should probably know before you see it on TV. And so I kind of came out backwards. I ended up coming out very publicly for reasons of activism before I even really thought about what that meant for me personally. And so I kinda had to do everything in reverse. It was like I came out huge and distributed around the world. And then I had to backtrack and do a lot of therapy and a lot of self-work to be like, what does this really mean for me? What do I feel about this? And so now, even though I came out when I was 27, I'm now 31 and I feel like I'm finally starting to come to terms with my identity as an intersex person four years later.
Tiffany Yu: This is the reason why I love having this podcast because you read Hanne's story years ago that inspired you to start to share yours. And I think there's so much in there to unpack. Not only is it the things that happen to our bodies as kids that people assume we don't remember. The body does remember. Then you talk a lot about passing and the shame that was embedded in, oh, I don't have a period or saying that you're infertile, to then only four years ago, I didn't realize it was only four years ago that you started connecting all of the dots. I want to take a quick break here. And then when we come back, we will continue chatting about your intersex journey, intersectionality too, Pride Month, all of the above. So stay tuned.
And we're back from the break. You're listening to this episode of Tiffany & Yu, the podcast. I have with me, Alicia Roth Weigel, Human Rights Commissioner for the City of Austin and an intersex advocate. Before the break, we were chatting about her journey into becoming an intersex advocate, which really only came to be about four years ago. And so there's something that you mentioned, where you said a little bit about how you appreciate that we're having this conversation because the I and LGBTQIA is often not given that much visibility during Pride Month or in general. So I was curious if you wanted to share more about why that is or how that makes you feel.
Alicia Roth Weigel: It's interesting. I have a few things to say about that. One, I just want to urge folks to always be curious and always be humble. Because what I think happens, even within the queer community, is people see LGBTQIA and I'll ask someone like, oh, like, do you know what intersex means? And maybe they think it's a fancy way of saying trans or non-binary. Or maybe they're too embarrassed to admit that they don't. And so oftentimes people don't want to look bad or uninformed and they'll be like, of course, but then what happens there is people remain ignorant of our community's existence and what we're fighting for. And so just even asking this question is the example of what I want to become the norm, which is in any circumstance being okay saying, I don't know. Or could you explain more? Or taking it upon yourself to do more research. And I would encourage everyone to do that with every letter in the acronym, including what often now is used as the extended acronym of LGBTQ2PIA+. And the 2 is there for 2 spirit, which refers to indigenous identities that fall within the queer spectrum. So I do urge people to continue to do the research and really be curious and humble to continually absorb information and be okay with not knowing everything. The more I learn, the more I understand that I don't know. And I think what ends up happening sometimes also within the queer community is they're like, oh, well, if I say LGBT+ that plus sign, that's supposed to include you so that's fine. When I say, okay, what the plus sign is meant to include people in our queer community, then would you be okay with me changing the acronym to TIA+ for trans, intersex, asexual plus, because then the plus would include the lesbian gay and BI communities. Are you okay with that? Can we shift it to just TIA+ and all of a sudden they're like, no, of course not like. Because people understand then what it's like to have your visibility and your place in a community to be erased. And the plus sign does nothing to help raise visibility of our existence and visibility is the first step to people. They have to first know that we exist before they can even begin to understand what our existence looks like, what some of the issues our community is facing, and how they might ally or become an accomplice in our fight for body autonomy as intersex people. And so I think Pride Month is a really good time to have that conversation. There was a recent iteration of the pride flag that just came out, where the intersex flag, which is yellow with a purple circle on it. Frankly, I don't think it's the most beautiful flag out there, but that's what we ended up with. And I'm glad that we have a flag and that flag was incorporated into the pride flag, including black and brown stripes, including the trans colors to include intersex people for the first time. And that was huge for us to be so visibly included in the queer community, where for so many years we've been fighting for a seat at the table. And yet when you read the comments on the posts online about the update to this flag, they're really sad and scary. And they're not from what we might think of as close-minded, conservative folks. They're from folks within the queer community who are saying, how many times do we need to update this flag? And how many more letters are we going to be adding to the alphabet soup. It's getting so confusing. And I just want to remind folks of what pride was about in the first place, which is a protest, a protest of identities being pathologized, whether it be gay, whether it be trans and society trying to erase those identities, whether it be by electroshock therapy in the gay community, or whether by unconsented surgeries on children in the intersex community. We're all fighting for the same things. And so I would urge people whose identities and the movements associated with them have made greater strides in recent years. We've seen gay marriage passed. We've seen trans identities be de-pathologized in the DSM. What that means in normal speak is being trans used to be considered a mental disorder. And now it's been de pathologized. It's now considered just a way of being. So a lot of these communities have made amazing strides in terms of their human rights in recent years. And I would urge those communities to not just shake themselves free the movement and say, okay, I got what I wanted. And so now I'm done. But to realize that there are still communities who are fighting for those same things, for the same right to exist freely as who we are. And to hopefully, if you feel that you have gained your rights or are in the process of doing so, then maybe helping pull someone else up with you rather than helping stomp on them. I think Pride Month is a really good opportunity to show the intersectionality between intersex experiences with gay experiences, with trans experiences, but being on your podcast as a disability advocate, I was sending you screenshots this morning. I was doing some research into the intersectionality between the disability movement and the intersex movement. And before I dive into that, I would love to hear your thoughts on all of that.
Tiffany Yu: Just in reaction to what you said, I don't think that people realize how meaningful it is to feel seen, no matter what community it is. As you were sending me these screenshots, a couple of things came up for me. So first is, the definition of ableism that I use in my work is from someone named TL Lewis and Dustin Gibson. And the general gist of it is that ableism is when society and people place value and worth on a person's body and or mind over another. And the last sentence of that definition is that you do not have to be disabled to experience ableism. And what I mean by that is what you are telling me about what happened to your body is an example of ableism. If we look back at the past 400 years of how non-black people have treated black bodies, that is an example of ableism, and this is where we see the intersections. I actually want to ping it back over to you to see if that definition of ableism resonates with you and how you see that reflecting within your own journey.
Alicia Roth Weigel: A hundred percent. And you talked about this social model of disability, and I'm just learning about what that means, but something that stuck out to me, when I looked at the World Health Organization's definition of disability is how they talk about overcoming the difficulties faced by people with disabilities requires interventions to remove environmental and social barriers. And so that reframes it as folks with disabilities are not the problem. The barriers to their success and thriving in society are the things that need to be changed. We don't need to change folks with disabilities. They're born as who they are, or they come into being who they are based on accidents or whatever life happens. And we need to remove society's barriers to their thriving. And that resonates with me so much as an intersex person, because the way that intersex folks have been treated by society is we need to operate or pump with hormones or basically fix their bodies to fit society rather than fixing society to accept and embrace intersex bodies. And so one chant that we have often at intersex rallies is we say, "change their hearts, not our parts." And there's this immediate urge by doctors to say, oh, they don't fit in this M or F box on the birth certificate. Well, then we better change the body to fit the box. And what we're saying is no change the box to fit the bodies. And make sure that we can build a society that is accepting of difference, not just accepting of difference, celebratory of difference. Celebratory of the beautiful diversity of ways to be a human being. And I think that's something that intersex folks and folks with disabilities share is just the understanding that we want to change society to fit us, not the other way around. Another thing that you said that really sparked something for me is when you talk about society's treatment of black bodies, there's this quote that I think incorporates both intersex issues and disability issues by an intersex activist of color named Kiran Foster. And it says, "intersex issues do not stand on their own, but rather highlight the way medical science is founded upon the white supremacist urge to pathologize and mutilate the bodies and cultures of people who do not fit their worldview." And I think that rings true to intersex folks, to folks with disabilities and black folks who in the past had medical experimentation done on them and had their bodies used as guinea pigs for medical quote-unquote advancement. It's like bodies that don't fit this white supremacist, ableist, cis heteronormative world view that the Western world has told us is the quote-unquote norm. Our bodies have been de-humanized, we've been used as research subjects. And we're still fighting to be seen as humans. We're still fighting for our basic humanity and it doesn't need to be that way. So as we're fighting against white supremacy, we need to understand that that's not just fighting for black folks. That's fighting for intersex folks. That's fighting for folks with disabilities. Just like when we're fighting the patriarchy that isn't just fighting for women, that's fighting for men who have been harmed by the patriarchy as well. Intersectionality is so real and I think there are just a huge number of overlaps between your experience and my experience down to the fact that both of our lives were deeply impacted and shaped by a car accident.
Tiffany Yu: All of these identities, black, intersex, disabled exist within both of the types of advocacy work that we do. During Pride Month, I'll hear from a lot of our queer community members who find that a lot of these celebrations aren't accessible for them. And then even within the disability community, there's a growing movement toward disability justice, which is how can we be more intersectional in how we view disability rights and how we push things forward. Disability isn't just a wheelchair. And you talk about the changing of the flag. We continue to have conversations within our community of our symbol of access doesn't look like a lot of us. I've had a lot of conversations on this podcast about how many of our guests have become advocates or started their organizations because they wanted to find a sense of belonging. They were always told that they weren't XYZ enough to be part of this community or XYZ enough to be part of that. And I'm curious if you find any of that sentiment fueling some of the work that you've done.
Alicia Roth Weigel: So one thing that's really interesting. I dated a man, who's now a man, at the time was a boy. We started dating in high school, long-distance into college, and I came out to him many years later. And when he read my story, he was like, oh, this explains so much about you. And I was like, what do you mean? He was like, well, you've always been able to hang with anybody. He's like, you were working with black, trans, homeless sex workers in South Africa and you work with white Texan politicos. You've always been able to hang with anybody. And it makes sense because you've never known anybody like you. And so you had to become supremely adaptable because when you grow up not having a community and not knowing anyone who has a shared experience with you, then you find a way to be so adaptable that you can relate to other people and that they can relate to you because that's how you achieve belonging. And it was like this crazy light bulb in my head. Then I was like, that's probably why I got into politics and community organizing and intersectional activism because truly growing up feeling so alone, I had to find these commonalities with other people. And it truly taught me that we all, regardless of what identities we hold, there are experiences that we all share as human beings. And you can always find some kernel of someone else's existence that you can identify with. And empathy is so fundamentally important.
Tiffany Yu: That was so powerful. And it really touched my heart. What's coming up for me is, I am a disability advocate. And for many of us, we've lived in this non-disabled world, so we've had to learn how to adapt, which has actually made us immensely creative and adaptable, and also really empathetic. Because similar to you, I didn't know anyone who looked like me. And so I just felt like, let me figure out how I can fit into your space and that other space and all these other spaces too.
Alicia Roth Weigel: Totally. And I think a lot of marginalized communities will identify and empathize with that feeling of needing to whether it's code switch or fit in through respectability politics to try to fit into this dominant worldview that is baked into every aspect of society. One thing that is unique for the intersex community is how we're so often navigating that so alone. A lot of my friends who are, not all of them, but a lot of my friends who are Latinx, for example, they grew up surrounded by a Latinx community, or a lot of my friends who are black, they grew up in the black community. And so they're facing this intense marginalization and yet they're facing it as part of a community. Whereas for me, I didn't find that community until I came out when I was 27, and still that community for intersex folks exists largely online because there are so few of us who are out in society that I feel like I know all the intersex activists in South Africa, Zimbabwe, Russia, everywhere because that is the way that we're finding community. And so if there's someone who's watching this to is intersex or listening to this who is intersex, who thinks they might be intersex, who knows someone in their life, who this is making light bulbs go off, that they might be intersex. I just want them to know that there is a community for you, and you can find that sense of belonging. And you should look into organizations online, like interACT advocates or the Intersex Justice Project, which is specifically geared towards intersex folks of color. And you can find that community. And that has been super healing for me just to know that I'm not alone and to know other people like me. And so hopefully with visibility, the same thing will happen for others that happened with me, just hearing someone's story that makes you comfortable maybe one day sharing your story. Or even if not sharing your story publicly, at least connecting with other people who have a similar story.
Tiffany Yu: I had a revelation during this pandemic, which is maybe I just belong to myself and this journey of trying to find belonging is inherent within me. Of course, go out and find the communities, find the other people, but how much messaging do we get whatever oppressed identities we hold that our worth and our value is based on someone else's view of us? How can we just have that belong to ourselves? I thought that this conversation was so enlightening for me. I loved hearing your story. I think stories are so powerful. I talk a lot about how storytelling is how we create intimacy and proximity with communities and experiences that are different than our own. And so for our listeners who want to figure out how they can be better allies or accomplices to the intersex community, would love to hear what you would suggest for them.
Alicia Roth Weigel: My number one suggestion, because this concept of being intersex is so new to most folks, and it takes people a while to really wrap their mind around something as they're learning about something totally new to them, is to try to follow intersex activists on social media. Because then you're not just hearing my one story or you're not just hearing one forty-five minute conversation between Tiffany and myself, but you're getting to hear a wide range of stories just like you talked about. And I have one recent post that I posted on my Instagram, which is my main platform that I use at least on social media, where I tagged 20 intersex activists in my photo, which is the limit on Instagram. You can only tag 20 people in a photo. There's way more than that. But I tried intentionally to tag intersex activists who all have totally different lived experiences. I have fat intersex activists. I have black intersex activists. I have intersex activists whose genders and presentation falls way further outside the binary than mine does, for example. Because we all share being intersex and yet we all have these intersectional identities with other communities and all of our stories are so different that the more that you hear intersex stories, the more that you'll be able to understand what it is that we're fighting for and to recognize our common humanity. So that would be my number one tip for folks is to maybe check that post on my Instagram and follow each of those 20 activists and just start absorbing those stories on a daily basis so that you can really start to understand who we are.
Tiffany Yu: Yeah. I love that. And what that ends up doing is it interrupts your algorithm to say, I want more stories, more firsthand accounts so that I can better understand again, communities and experiences that might be different than my own. To close our conversation, I always ask my guests what they are grateful for today.
Alicia Roth Weigel: Well, I'm really grateful for this conversation. And I guess one thing that you mentioned about the universe or God, or being religious. So I am not Christian, but I do think a lot of folks have heard about some of the basic stories within Christianity, like Adam and Eve, for example. I have been really grateful to have discovered Kabbalah Judaism, which helps shapes the way that I look at the world. And part of the reason why I've adopted that belief system is because of their interpretation of the story of Adam and Eve. And so hopefully what folks can take away is not that I'm here preaching religion, but that how we can shift our way of thinking and how it can really affect our way that we perceive the world and other people. So in the story of Genesis with Adam and Eve, I think the way that most folks in Christianity interpret it is that Adam took his rib and made Eve. What a lot of folks don't think about it is that the Bible was never written in English. It was originally written in Hebrew and then translated over time and things get lost in translation. But what Kabbalah Jews point out is that the word rib that was used in some of the original texts that have survived, wasn't exactly the word rib. It was this word that more means side. It was like a construction term. So they would be used as like a rib of a tabernacle, like a side of a tabernacle when they were building a church or something. And so what they talked to is, if they understand that the phrase rib that way more as side, so then it was, God took the side of the human being and made male and female. And the way that they interpret the whole Genesis story is that the original human was male and female, and then God took one side of that and split it. And so when you look at it that way, the original human being was intersex. For me, that was just such a helpful way to reframe it, where it's like, I've been raised my whole life to think that I was a problem or whatever. And it's like, well, actually, if you look at it that way, then everyone came from us. That views us as divine beings and the source from whence all else came. And so really just helping folks think about how what we've been taught or the way that we've learned to interpret things. We can always shift that and change that and learn new things. And I'm grateful for that ability of talking with people, learning new perspectives, and the ability to learn and grow and shift the way that I think about things.
Tiffany Yu: I love that. I'm so grateful to have you on my podcast. And this is the end of this episode of Tiffany & Yu.