Originally published at: https://www.ohmydollar.com/2019/07/10/the-cost-of-being-intersex-ft-hans-lindahl/
- Why Hans views intersex people as part of the GLBTQI+ community, but not every intersex person does
- The challenges finding health care providers – even at the queer-focused clinics- that understand anything about intersex people
- How medical billing doesn’t understand intersex people at all – and how one wrong medical code can result in thousands more in costs
- How much of the costs associated with being intersex are related to things done to intersex people – including surgery – before they were old enough to consent or know
- How trans* and intersex rights are part of the same struggle
- The demedicalization of homosexuality and being transgender and how it’s related to rights for intersex people
Links from this show:
- interAct
- interAct on twitter
- Hans on Youtube! (check out her series of intersex people talking to other intersex people!)
- Hans on twitter and her website
Other resources to check out if you are interested in learning more:
- The Intersex Justice Project
- interAct’s DIY resource list for individual medical and legal concerns
- Accord Alliance
- Intersex Society of North America (ISNA)
- Mermaids UK
About Hans Lindahl
Hans is an intersex cartoonist and has been active in intersex advocacy and activism since 2015. She has spoken to general audiences, doctors, lawyers, and state legislatures about intersex issues. Features include The Washington Post, Good Housekeeping, Cosmopolitan, and Marie Claire. Hans does sensitivity reading work for authors and creators writing intersex characters. Her goals are to increase intersectional awareness and to create sensitive intersex representation in comics and other media by writing and illustrating full length stories. The first excerpts, Future Husband, are available on her website.
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Transcript (provided by our listener supporters on Patreon)
The Cost of Being Intersex ft. Hans Lindahl.mp3 | Convert audio-to-text with Sonix
Will Romey:
This show is supported by generous listeners like you through our patreon. This episode was underwritten by the Tamsen G Association and Warrior Queen. To learn more about ways to support Oh My Dollar! and get cool perks exclusive live streams and a fancy special cat icon on our forums. Is it a cat icon?
Lillian Karabaic:
It is a cat icon!
Will Romey:
You can visit ohmydollar.com/support.
Lillian Karabaic:
Welcome to Oh my Dollar!, a personal finance show with a dash of glitter. Dealing with money can be scary and stressful. Here we give practical, friendly advice about money that helps you tackle the financial overwhelm!
Lillian Karabaic:
I’m your host Lillian Karabaic.
Lillian Karabaic:
And all of June we’ve been talking on and off about different queer money issues – things that impact the LGBTQ community during the fiftieth anniversary of the Stonewall riots, which kind of launched the modern Pride movement.
Lillian Karabaic:
And one issue that I think is often ignored – is intersex issues, which end up being pretty heavily financially linked because a lot of intersex folks have medical issues.
Lillian Karabaic:
So, we are joined today to learn more about this by Hans Lindahl, to talk about how being intersex can impact your finances. Hans is the communication director for InterAct, an organization which uses innovative legal and other strategies to advocate for the human rights of children born with intersex traits.
Lillian Karabaic:
She’s also a San Francisco based intersex cartoonist, has been active in intersex advocacy and activism since 2015. She’s spoken to general audiences, doctors, lawyers, and state legislatures about intersex issues. Hans sensitivity reading work for authors and creators writing intersex characters.
Lillian Karabaic:
Her goal is to increase intersectional awareness, and create sensitive intersex representation in comics and other media by writing and illustrating full-length stories.
Will Romey:
Let’s get her on the phone.
Lillian Karabaic:
Hi Hans!
Lillian Karabaic:
Well we’ve brought you on today because in addition to being a smart human you’re also intersex and an advocate for people born with intersex traits for listeners that might not know what is intersex.
Hans Lindahl:
Sure! So Hi Lillian! Thanks for having me. So I’m an intersex person, and the way that I explain it – I’ve been doing this work for many years is basically intersex people don’t know how to follow directions.
Hans Lindahl:
So it has to do with the human sex development process. And about 98 percent of people usually develop their body along one or the other complete path, right?
Hans Lindahl:
So packages that we think of as “male”, you know you have these traits – or “female” and you have these other traits.
Hans Lindahl:
Intersex people are very creative in their direction following so they have somehow not exactly followed one of those paths.
Hans Lindahl:
So maybe they have a mixture of some characteristics, or maybe they didn’t develop some characteristics, but either way their body is just not exactly as expected. So you’ve deviated from one of those paths, and intersex people are fairly common. It’s about one point seven percent of the population by broad definition.
Lillian Karabaic:
Okay. So this is this is not an insignificant amount of people that might fall into this category.
Hans Lindahl:
Yeah absolutely not!
Hans Lindahl:
And most people find out this information about themselves, in a medical context and intersex is kind of a reclaimed term.
Hans Lindahl:
So, some people identify as intersex, and take on everything that means politically. And other people either might choose to position that differently for themselves, or because of the Medical Interaction, might just consider themselves you know a man or a woman with a medical condition or both.
Hans Lindahl:
But it’s a very broad term.
Lillian Karabaic:
And that’s one of the things that like within the queer community, has been you know the question of whether or not intersex folks are kind of part of the alphabet soup umbrella, that has been created because some people really feel like this “this is not part of my gender identity, this is a medical condition I have. And then other people feel very strongly like I I exist at this intersection of different gender characteristics and therefore I am part of the LGBTQIIA+ community.”
Hans Lindahl:
Yeah. And I’m definitely a believer in the inclusion model right. To me it makes a lot of sense. So I think the key thread that really links us all together is this idea of demedicalization. Right?
Hans Lindahl:
So it wasn’t until about 1990, that being gay was declassified as a mental disorder. Right? And I being trans was just declassified as a mental disorder by the World Health Organization this year.
Hans Lindahl:
And so likewise intersex people have been fighting to be declassified as a physical disorder right, because all of these things somehow happen within your natural body right. They’ve happened on their own – and to the individual it might not necessarily really be a problem, it’s because of this land of medical pathologization, that all these things are are marginalized.
Hans Lindahl:
And I often say that being intersex, you can have any gender so it’s not necessarily directly to do with your gender – but the violence that intersex people experience is because of gender. Right?
Lillian Karabaic:
Right.
Hans Lindahl:
Things like surgery to change your. Bodies without our consent. These are all based in homophobia, transphobia. All of these exact same forces historically because if you couldn’t tell what sex the person was, you couldn’t tell if you couldn’t make sure that they were being heterosexual at all times.
Lillian Karabaic:
Right. So, I mean that kind of leads into the next question which is that intersex children often have medical procedures done on them as quote unquote “corrections”, and end up spending the rest of their lives dealing with costly health care. That is a result of things done to them without their consent.
Lillian Karabaic:
You know sometimes like right after birth, can you give me some examples of like kind of the long-term health care consequences of of intersex medical interventions done?
Hans Lindahl:
Yeah of course. So I think we’re talked about a content warning for for medical and trying not to get too in-depth but I’ll touch on some of what these things could be.
Hans Lindahl:
I would generally separate intersex interventions into a kind of two categories – which would have different types of financial and medical effects for an adult. Most intersex interventions are done, when a child is under 2 years old. So currently parental consent is a model for all of these types of interventions.
Hans Lindahl:
And so I would say there’s two categories. The first category being having to deal with the internal or external gonads to the hormone producing organs. And the second category is procedures that have to do with the external genitalia, and for the appearance of the genitalia.
Hans Lindahl:
And so for the first category with internal gonads, children you can have different combinations of gonads and gonad is the neutral term for hormone producing organs so gonads become either ovaries or testes – and you might have a child who has quote unquote “the wrong” or you know you’d look at them on the outside and inside they have different gonads than you might expect.
Hans Lindahl:
So someone who has a vulva on the outside, could have internal testes. And so, a common procedure is to want to remove those internal testes – because a person with a vulva and testes doesn’t match – that must be an emergency.
Hans Lindahl:
But really what you’re doing often in that situation, is removing a person’s hormone producing organs – which means that they’re going to be dependent on artificial and external hormones for their entire life.
Lillian Karabaic:
And hormones are big deal for a lot of things – like you *need* them.
Hans Lindahl:
Hormones are big deal. So that’s a pretty significant thing. If those testes or ovaries or internal organs would have produced hormones – you’re then taking that away from that person.
Hans Lindahl:
And we talk about how these can also impact fertility right? Because you know that testicular tissue might be able to be salvaged for something, in terms of fertility.
Hans Lindahl:
So it’s in those types of surgeries are a big deal in that they affect your hormone dependency for your entire adult life.
Hans Lindahl:
And there’s of course zero studies on intersex adults. So all of this is – a crapshoot for us. So these interventions happen very young and then nobody knows anything about us or can do anything for us or has any data at all about intersex adults.
Hans Lindahl:
As far as when the hormone side, especially.
Lillian Karabaic:
So, it sounds like to me because of this intersex folks need to find health care providers lifelong that understand their needs. That understand what the characteristics that intersex people need and have and also understand you know long- term interventions.
Hans Lindahl:
Absolutely.
Lillian Karabaic:
Is that challenging?
Hans Lindahl:
Oh absolutely. And I forgot to touch on the second category of intervention, which has different effects.
Lillian Karabaic:
Right. So the hormonal effects on gonad surgeries and then Genital Surgeries are an entirely different category. So with that, the side effects are pretty – can be pretty severe – all the way from sexual dysfunction, to urinary issues and infections, because you were doing surgery and creating scar tissue where previously, you know, you didn’t need to. Right?
Hans Lindahl:
Anytime that you do surgery you’re creating scar tissue, creating risk might need reoperation. So if you’ve had genital surgeries, that could be anything from a clitoral reduction – which down an infant can be pretty sexually compromising.
Hans Lindahl:
Things like vaginoplasty where you’re creating that in an infant, which is a very intense procedure to heal from. And of course, other procedures to sort of normalize the external appearance of the genitalia, which can involve tinkering around and moving the urethra and usually the urethra was fine, it was working – you could pass urine, so there wasn’t an actual health risk. But they move it for sort of cosmetic reasons.
Lillian Karabaic:
and then that can end up having effects on people’s ability to urinate.
Lillian Karabaic:
Right. Because those surgeries are incredibly risky like the risk of infection and urinary problems from touching a urethra. It’s generally very high, if it was working in the first place. Then you know didn’t really need to do that.
Lillian Karabaic:
So. And this all happens. You know to kid before they’re at any point able to consent usually generally. Right. And so. But they’re they’re carrying around essentially this this lifelong financial and health burden of making sure that they have access to providers that understand what they’ve they’ve been through.
Hans Lindahl:
*bursts out laughing*
Lillian Karabaic:
And also have information –
Hans Lindahl:
I’m sorry, that’s a funny thing.
Lillian Karabaic:
I mean it’s funny because you live it. Right?
Hans Lindahl:
Funny because it’s not possible. Let me the mistake that we quote is that so 82 percent of intersex people have changed providers alone- because of insensitive language.
Hans Lindahl:
Only for that reason. 82 percent of people are leaving and uncomfortable and frustrated.
Lillian Karabaic:
And that’s just language,
Hans Lindahl:
That’s not even only for using you know outdated and horrible language.
Hans Lindahl:
Nobody knows anything about intersex people. Right?
Hans Lindahl:
So I mean you touched on having to find understanding providers as adults, and we laugh about that because it just doesn’t exist.
Hans Lindahl:
I mean I live in San Francisco, I’ve had such horrible experiences trying to find someone here. You know – I know all my friends stories from different places across the country that are everywhere from large metros to very small rural areas. And you know, we’re all kind of in the same boat. It’s all word of mouth.
Hans Lindahl:
It’s all sort of like this underground little network of like “OK, Who isn’t terrible and isn’t going to scar me in the first 30 seconds of the interaction?” And we’ll sort of take our chances trying to access care, because we need things for you know like adult effects of genital surgery and urinary problems.
Lillian Karabaic:
Right.
Lillian Karabaic:
And of course hormone management is usually the biggest one. So I mean obviously health care in the U.S. is is a challenge, but I imagine that this is true even even in places that maybe have less screwed up health care systems than the United States. Like finding providers that still understand what – our knowledge is constantly changing around intersex folks – like that understand this must be a challenge everywhere in the world.
Hans Lindahl:
Of course.
Hans Lindahl:
And I mean I go – I’ve thought that going to like LGBT or trans clinics would be better – because I thought maybe they would at least understand hormone management in different populations. Right?
Hans Lindahl:
But I’ve had some of my worst experiences at clinics that were supposedly trans clinics. Right? Like I’d go in, they hadn’t heard of intersex people they didn’t have any forms for me – they didn’t have anything. And it’s just always been a really frustrating experience.
Lillian Karabaic:
Right. So just. Just not actually even knowing how to put you in a box, which is kind of the life of an intersex person- impacting your ability to get care in any way.
Hans Lindahl:
And a lot of the things – like the codes, for example, for medical codes will get coded as trans care and so of course, intersex people every time are also swept up in the discrimination against trans people.
Hans Lindahl:
Because when we’re trying to eliminate transgender health care like this attack, that we’re under siege from – that’s also every time going to affect intersex people, because that’s how we’re coded and sometimes that is the places that we go to.
Hans Lindahl:
And of course you know historically we’ve always tried to stand with our trans siblings, because our issues are very, very linked and very close.
Lillian Karabaic:
Yeah. Well thank you for being part of the umbrella.
Hans Lindahl:
You’re welcome.
Hans Lindahl:
Thank you for helping break down the gender binary by your pure existence.
Hans Lindahl:
We’re working on it.
Lillian Karabaic:
If you’re willing to talk about it. Can you talk about ways, that you know being intersex has impacted your own finances?
Hans Lindahl:
Yeah. I mean. Well I guess first and foremost, my current job is for an intersex nonprofit. So that is of course a financial decision. Right? Working for a small nonprofit for a cause that you really care about.
Hans Lindahl:
And so that is of course a choice. But it does also restrict, what I’m able to do especially as far as health care.
Hans Lindahl:
So right now, I don’t have health care. I’ve never been really able to afford the premiums, because the premiums don’t cover any of the few places that I’d actually be able to go where I feel safe as an intersex person.
Hans Lindahl:
So that’s another thing is that, you feel even more restricted – incredibly restricted in who you can go to, and where to go – to not just be you know immediately insulted.
Hans Lindahl:
And so once you find that person, you’re very loyal, right? Or like very locked in. And so I’ve been right now trying to pay out of pocket to be able to see just that person, who I know is safe.
Hans Lindahl:
But it affects me also because you know, I’m obviously paying out of pocket for these things, I’m paying more, to avoid triggering doctors – like I will pay any amount of money to not be asked when my last period was. Like. You name it. I will pay it.
Hans Lindahl:
Just please stop asking people that question.
Hans Lindahl:
But I think also for me as an intersex person who has had a gonadectomy, hormones obviously is the issue. Right?
Hans Lindahl:
It’s – I think it’s a lot easier for folks on estrogen, compared to folks that are trying to get oo T – T for testosterone.
Lillian Karabaic:
Because it’s more common? Or T’s more regulated – because it’s more ripe for abuse?
Hans Lindahl:
Right. Well estrogen is the synthetic estrogen and it is much more common. Because that’s a component of birth control right. Right. How common is that?
Hans Lindahl:
And so right now what I’ve been doing, thanks to Obamacare, is just using you know the small amount of estrogen in birth control pills to try and get it that way – because of Obamacare the co-pays are restricted. So that’s like an accessible way to get at least some small amount.
Lillian Karabaic:
America’s so broken America.
Hans Lindahl:
In the interim, because I can go and you know, get that.
Hans Lindahl:
But if I wanted to get like an actual dose of estrodial, or you know suppose that I was a person who was more masculine, or you know a male and masculine intersex person, who preferred testosterone. And a lot of actually intersex people who are female in their gender – also prefer testosterone, because some intersex people you know, are are women but are androgen-insensitive. So their systems react better to testosterone actually feminizes them.
Hans Lindahl:
So with hormones. – But that gets expensive. Testosterone I think is many times as much as estrogen, especially the injections can be really really expensive and out of pocket.
Lillian Karabaic:
That’s also the thing, I mean, from what I’m hearing is that like there is a lot of factors that go into even figuring out, if you do need – if you do need hormones. Even figuring out what kind of hormones and what works for your body, because it’s such a complicated thing and that to me as an American that sounds like an expensive expensive place to get to.
Hans Lindahl:
You know any time that you’re doing like that trial and error. Absolutely because you’re supposed to be tracking it over time, which I of course haven’t been able to afford to do.
Hans Lindahl:
You’re also supposed to be intersex people, you’re supposed to do bone scans like bone density scans – because one of the main health consequences of a lack of hormones, is osteopenia or osteoporosis, because estrogen – and think t – but at least estrogen for sure what I know in my case is that that really affects your bone density, and who knows what else in your system – Right?
Hans Lindahl:
I think most days I’m in a very like neutral state, where I don’t make any t, I don’t make any estrogen, and I have only like very small amounts of estrogen from what I’m taking externally. And so yeah I wonder about kind of what that’s doing.
Hans Lindahl:
Yeah. We’ll find out.
Lillian Karabaic:
Right. Oh and you just have to go. Go check it up with a C.T. scan – no big deal, uh.
Hans Lindahl:
It was ridiculous. The bullsh*t is – that you know a lot of people are are having to bear these costs and logistics because of things that were done to them, by the medical industrial complex in the first place.
Hans Lindahl:
Right.
Hans Lindahl:
Like if they check your gonads, if they messed up your genitals – like they did that to you. And now here you are as an adult. Like SOL.
Lillian Karabaic:
And there’s a lot of people for which they did they didn’t even know until they they hit puberty, or even some people a lot later in life that they had these things done to them. Right? Because a lot of it was kind of concealed or hush hushed.
Hans Lindahl:
And some you know that was kind of a couple of generations ago, the model. And I think that the wild thing is that you know of course medicine was always built as a very paternalistic institution.
Hans Lindahl:
I think it wasn’t until the 60s, 70s that it even became protocol for doctors to tell people what was wrong with them. Like you have this terminal disease- or you can do this, or you can do that.
Hans Lindahl:
like that is new like, giving people options even. And so, that was kind of where the model of intersex care came from was that the doctors would decide “this is so shameful. You can’t tell anyone. We’re going to erase it.”.
Hans Lindahl:
And they might not even tell the parents – from like the 50s through the 70s and 80s sometimes. And so there’s this generation of older intersex adults who are traumatized by that model, and who you know, they might find out. I know several friends – who are like older women in their 40s 50s, who didn’t find out that the operation they had as a child – was to take out their testes until they were like 40s ,50s and they found their medical records.
Lillian Karabaic:
Wow. Yeah I mean that’s that’s a big deal. Like there’s consequences, of that, in the long term.
Lillian Karabaic:
All right. So if people are hearing this and they want to support intersex people in getting safe health care and like helping helping generally to make this be less screwed up – is there anything they can do?
Hans Lindahl:
Probably! I mean so what intersex activists have been trying to do for decades, is to you know go above the medical industry and change policy, because that’s really you know if medicine won’t self-regulate for ethical concerns – like it’s – Like it did with electroshock therapy, like it’s doing with gay conversion therapy right?
Hans Lindahl:
Then that’s where we have to kind of zoom out to a policy level, when there’s ethics and human rights concerns.
Hans Lindahl:
And so I think the best way to do that, is of course by giving directly. So the organization that I work for interact is the only intersex-led law & policy group that is working on this issue nationally. And there are other- And so we put out education materials, and you can also pay interAct or pay other folks like us to come and educate med students, educate health ed teachers, you know.
Hans Lindahl:
Because in med school, there’s usually no curriculum that’s dedicated to this.
Hans Lindahl:
So support Organizations like interact monetarily. We do provide educational materials, so brochures, information, and hospital policy guides. And other organizations, too. There’s a really fine organization called the intersex Justice project, that takes the angle of more direct organizing – like on the street protests.
Hans Lindahl:
But yeah, I think between supporting those types of groups, paying people to come and speak to medical audiences. And anybody can call their hospital and ask what their policy is.
Hans Lindahl:
Because there’s no hospital in the United States that has come out as saying that they’re not doing this. Hospitals won’t say that they’re not doing this. So if you call, you know call the ethics department ask about about their policies – then you know maybe something will start to register.
Lillian Karabaic:
Yeah we just slowly death by a thousand paper cuts, as like the hospitals give to us. We can give back to them and maybe they’ll change a policy.
Hans Lindahl:
Yeah right. And just talking about it is helping right because we went from you know “burn the medical records, tell no one” in the 1950s, to the 90s being the start of sort of public intersex people connecting via the Internet and starting to protest in the streets.
Hans Lindahl:
And now here we are in 2019, 2020 where we’re making serious strides towards our first actual policy and enforcement, of you know getting intersex people equal rights over their own bodies.
Lillian Karabaic:
But I mean I feel like that’s a really hopeful note to end on – something I ask every guest. It doesn’t always make it into the final cut, is what is the best financial decision you’ve made? And what is the worst.
Hans Lindahl:
Okay. These were easy easy things to pinpoint for me. So my my best was changing my name. And I think that was an expensive gift to myself, because I of course I’m usually on the threshold where I make not enough to qualify for any like help or waive fees or anything, but too little that I can’t do anything.
Hans Lindahl:
But I was able to change my name. And in California, they make it a little bit easier, but all in that was probably about six hundred dollars. But you know not having to hear my old name, and not getting deadnamed by cashiers when I’m buying gas stations slushies – that is priceless. I was a priceless gift from me to me.
Lillian Karabaic:
I also changed my name, and it was very valuable.
Hans Lindahl:
Yea.
Lillian Karabaic:
I don’t even -I don’t even think about the money. You know it’s just.
Hans Lindahl:
Right, yes.
Hans Lindahl:
And you know it’s a good financial decision. Yep right.
Lillian Karabaic:
I like that.
Hans Lindahl:
And so at my worst, my worst hands down. When I first moved to San Francisco and when I was 21, I took my dad’s advice and I bought a car to live in San Francisco.
Hans Lindahl:
And I’m sorry Dad but that was horrible.
Hans Lindahl:
And I think it kind of speaks to like a generational and value difference, in like understanding kind of how to live – And like cities.
Hans Lindahl:
And it just wasn’t really applicable advice in a different climate. And so that was- Probably the headache of my life.
Lillian Karabaic:
Yeah. A car in San Francisco is rough. I wouldn’t wish that on anyone.
Lillian Karabaic:
Well thank you so much for joining us today. I’m sure listeners will learn a lot, and if they want to connect with you as a human and also with the work of interAct where do they go?
Hans Lindahl:
Yeah. So our Web site is interactadvocate.org. @interact_adv on social media and so I post mostly updates on our policy work. And just all the things that are going on in the intersex world via those pages.
Hans Lindahl:
And my handle on everything is hihellohands – Instagram., Twitter and I also have a youtube channel where I’m starting to explain intersex concepts.
Lillian Karabaic:
That’s awesome. Thank you so much Hans.
Hans Lindahl:
Yeah. Thank you so much. This is a pleasure.
Lillian Karabaic:
Anything you want to add before we run out the tape?
Hans Lindahl:
Go intersex people!
Hans Lindahl:
*giggles* You know. Yeah. I don’t know what to say to that.
Hans Lindahl:
Support your local organizing intersexual.
Lillian Karabaic:
Nice. This was so great. Thank you for all of your patience. Given that this is our second run through of this.
Hans Lindahl:
Thanks so much Lillian.
Hans Lindahl:
That wraps our show for today. We love hearing from you! E-mail us your financial worries or successes at questions@ohmydollar.com or tweet us @anomalily or @ohmydollar.
Lillian Karabaic:
Our producer is Will Romey, our intro music is by Aaron Parecki, and your host and personal finance educator is me Lillian Karabaic.
Lillian Karabaic:
Thanks for listening, and til next time, remember to manage your money, so it doesn’t manage you.
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