Episode 40: Intersections of Invisibility with Ariel of @Carpe_That__Diem, Part 1

Episode 40: Intersections of Invisibility with Ariel of @Carpe_That__Diem, Part 1


If you’re involved in the Spoonie community on Instagram, you’ve probably come across Ariel L. of @carpe_that__diem, who blogs about living in a disabled trans agender body, mental health, working with a SD (service dog), and death positivity. An academic by training and trade, Ariel’s perspective is eloquent, enlightening, and engaging. He uses this interview (in two parts) to dive into the intersections of invisibility in his life – as a disabled person living with post-hysterectomy endometriosis, Hashimoto’s disease, and a Cluster B personality disorder; as well as both inner and outer perception of his gender identity, and how his medical conditions have interfered with his self-realization. A complex and candid interview, Ariel paints pictures of frustration – and triumph – in his survival story. (And a heads-up that if you hear any barking in the background – those are Ariel’s pups saying hello!)



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Ariel @Carpe_That__Diem Caliban Uninvisible Pod

Lauren: Okay guys, thank you so much for joining us today. I am here with a very special guest, who I'm so excited to connect with. I am here with Ariel from @carpe_that__diem. Some of you may know him from Facebook or Instagram. And he's going to talk to us about his experience of invisible illness, disability, and gender. So Ariel, thank you so much for joining us!

Ariel: Thank you for inviting me. This is such a privilege to be starting out on a podcast so early in my new accounts career!

Lauren: Well, it's very exciting to have you on, and we connected, as I have with so many of my guests, through Instagram! It's amazing the community that's out there. It just reinforces what so many of the people on the show say … we're all out there for each other. And we just connected and started chatting, and I was like, “You need to come on the show!” So here you are.

Ariel: Here I am!

Lauren: So, Ariel, why don't you get us going here and tell us how you first realized you were sick, and what illnesses that you were dealing with?

Ariel: So, my story's a little bit different than some of the other people in my age demographic in the chronic illness community.

Because I actually had a pediatric diagnosis, and I actually grew up sick, more or less.

I had chronic ear infections all the time when I was a little, little kid. I had behavioral disruptions in school. I was constantly in pain, I was constantly inflamed. I got disoriented very easily. I had multiple hospitalizations related to mostly heat intolerance. Because I grew up in South Florida, and even today, gosh, I think it's already in the high 80s not even factoring in the heat index. So I was particularly vulnerable. I had several stents. I had very devoted parents who advocated for me and made sure that I was accommodated. We would go to the pediatrician. And we had a very hard time trying to figure out what was wrong. It wasn't until the pediatrician that I switched to when I was eight or nine years old really listened to the symptoms that my mom had been describing. Because prior to this point, some pediatricians had said, “Oh, he has childhood asthma,” and prescribed a nebulizer and I would do albuterol treatments and other nebulizer treatments multiple times a day, but it never alleviated my symptoms. I constantly had throat pain, difficulty breathing — all the things that are associated with asthma. But this pediatrician felt that in context with some of my eating issues, some of the skin issues that I had, issues with my hair and my maturity and my healing ability … and did a finger test in the office that I remember very clearly, because I was absolutely terrified of sharp things when I was a kid.

Lauren: Who wasn’t?!

Ariel: Exactly. They ruled out pretty quickly Type 1 diabetes.

But he had another hypothesis and recommended me to go upstate to have some testing done for my thyroid levels.

Lauren: Wow. So at a young age, you were already presenting with several conditions.

Ariel: The statement that pushed him in that direction was when my mom relayed that I had told her that it felt like my neck was broken. Like it was pushing my head back, particularly when I would swallow. So I had a really hard time eating foods; I rejected foods. Initially, it was just put to me being a picky eater. But eventually it was picked up pretty quickly that there was a physical component to it. Because at this point, I had a goiter that had swelled, more or less the diameter of my throat. So this doctor, who was very bullheaded in his own right, had actually called the hospital up there, reprimanding them for not taking my labs sooner because they were fasting labs. And everybody who's hypothyroid, who's ever had to go for a fasting lab, knows the struggle.

And the lab work came back … not only were my thyroid levels all over the place, but he had done a full panel and it also detected the antibodies associated with Hashimoto’s.

So that was a very early-on diagnosis, spot on, that my pediatrician was able to identify and then recommend me to follow up with a pediatric endocrine specialist in Miami.

Lauren: So those exist, for a start, which is exciting!

Ariel: That existed back in the ‘90s.

Lauren: That’s pretty exceptional. And it's great that you found that doctor in time to actually start doing something about it when you were young.

Ariel: Exactly.

Because when I think about where I am now in my life, I can't even think about where I would have been if I didn't have the doctor fighting so hard to really narrow down what was going on.

Lauren: So you were aware, even at that young age, of the advocacy that was at work for you, not only from your mom, but also with your doctor as well.

Ariel: Exactly. I had a very strong appreciation for that. Not so much when I was a little kid, because mostly I was just fussy and pissy, in pain all the time. But as I grew up and became an adult that had to be responsible for myself, I looked back and I really appreciated all the work that was already done to make my case.

Lauren: That's wonderful that they caught it. It sucks that you had it …

Ariel: Exactly.

Lauren: But it's great that they were able to catch it. So you've been managing the symptoms of the Hashimoto’s, I presume, ever since?

Ariel: Yes, they started me on the good old classic Synthroid, when I was very young. Armour Thyroid has come up a couple of times with that particular specialist, and with a couple of other doctors that I’ve seen since then. But we're not really sure how effective or good for me it would be, because my current doctor has a word that he likes to use for me, and it's ‘sensitive’.

I'm very sensitive to even the slightest changes in any medication regimen or ingredient in the medication.

I've switched different forms of levothyroxine and different measurements of it probably 20 times over the past five years, just because either I've been allergic to a component of the medication itself, so I can't take the generic because of the ingredient in the dye. Or I've had some other change happen where a dose just does not agree with me anymore. And I become very reactive to it.

Lauren: Honestly, I've been having that lately, myself. I think that shifts as our hormones shift — which, they shift all the time. And so many aspects of our lifestyle are factors in that shift, too. So it's no surprise to me that you've had to change that medication over the years. It makes a lot of sense.

Ariel: And especially because I've been postmenopausal now because of my hysterectomy — which we'll talk about a little bit in depth later. But ever since then, I really am kind of just sliding up and down the scale of what works, what doesn't work. So it's always been a little bit of a fear about whether something like Armour Thyroid, natural desiccated thyroid, would do more harm than good … I think they try to be consistent with how much thyroid gets into every capsule, but at the same time …

Lauren: It's still a compounded medication. It's not the same as something from a large pharmaceutical company where it's as carefully … I mean, there are pluses and minuses both sides, aren’t there?

Ariel: Exactly. So that's where I am with that. And it's been a wild and fun history.

Lauren: Yes. Hashimoto’s. It's so fun.

Ariel: The most fun. Everybody is missing out.

Lauren: I know! It's funny … Hashimoto’s, I find to be one of those really interesting diagnoses. Probably 75% of the people I've talked to, who say to me they have Hashimoto’s, have no problem managing their symptoms and getting their levels right. For a lot of people, it's a very simple treatment; they just start taking the Synthroid or some kind of combo therapy with T3 and T4, and they’re right to go. But then there's that small population of the rest of us, who end up getting the diagnosis and spend years trying to get it right. And have much more extreme reactions to the condition itself. And it takes just a bigger toll on our bodies. We're the lucky ones.

Ariel: Absolutely. We’re the ringleaders.

Lauren: So tell us what else you've got going on. You mentioned your hysterectomy … we can talk about that. Go for it.

Ariel: Yes.

So I had my hysterectomy, because I wanted it to be the first step in bottom surgery for gender affirming surgery. But it became my priority over other aspects of gender affirmation because of just not only the dysphoric amount of pain that I had because of it, but because of just the real time physical pain that I had from menstruation itself and from the hormones associated with it.

I was a very early developer, lucky me. I was in second grade when I started hitting puberty. And everything that I ever learned in Girl Scouts about growing into a wonderful young woman was a lie. Because I did not have the support of the other young people my age. They were very cruel and mean to me, because I was not only an early developer, but I was a well-endowed developer. So my peers weren't supportive. I had adults making very inappropriate comments about my body from a very early age, that followed me well into my teen years. And I had a really hard time coping with menstruation, because it was so painful. And I had a hard time articulating what that pain was, relative to what the expectations were. Because everything was … you know, it hurts, it hurts, it hurts. But I didn't have peers that I could talk about it with and hear back, “It's not supposed to hurt that bad.”

I just was in a space of suffering, and not realizing how undue my suffering was until much later in life.

And even by that point, it was only because the lid was starting to be opened up on the period discussion — where more women and assigned-female-at-birth people were speaking out about the pink tax and the unfairness of the price increases and the unfair pricing of menstrual products, the lack of access to them in public facilities. And that's where those conversations of things like PCOS and endometriosis and menorrhagia and all that started out from. That was the point where I started to have to think more seriously about what was happening to me. And how abnormal that was.

When I did finally start taking a stand in my urogynecological health, a lot of that was just about trying to normalize how much of my experience was identifiable. I was also trying to get a grip of my own autonomy of the situation.

Lauren: Which was probably all happening at once. And that's a lot to be processing emotionally, let alone physically.

Ariel: It really was. Fortunately, I had a very sympathetic surgeon who I networked with, who is at the top of her game, essentially. She's a leading practicing surgeon and instructor with the local university here. She travels abroad to perform life-improving procedures for women in developing countries who don't have access to gynecological health care. She is one of the lead surgeons of the most minimally invasive type of gynecological surgeries that are out there, using the da Vinci robotic methods.

Lauren: What’s that? That sounds very interesting!

Ariel: We will get into it, because she actually did identify me as a candidate for this kind of surgery, to be minimally invasive. Which was very important to me, because part of this was for gender affirmation reasons. So having this minimal scarring, indicating hysterectomy was possible, was ideal. And to this day, all of my scarring is just inside my belly button, because it was a single incision surgery.

Lauren: Wow! That's really impressive.

Ariel: I can't even get into how cutting edge, Jetsons-tier-like, futuristic that is. That's just below like surgeries by exterior lasers like you see in the movies.

Lauren: Set in the future, of course! So you were diagnosed with endometriosis eventually? So then you wanted to get the hysterectomy not only for your comfort, and to remove that level of pain that you were dealing with, but also, as you say, as a gender affirming surgery. So what happened? Tell us about that surgery, and about these Da Vinci robots and what it's been like since.

Ariel: So, there's a really fascinating video online that I recommend watching and possibly even linking in the description here. About these Da Vinci robots actually performing surgery on a grape, and it just shows how precise these instruments are and how delicate these instruments are. It shows them peeling the skin off of a grape so perfectly and the grape itself being perfectly intact. It's amazing. So these robots are piloted by the surgeon, who sits at this console and basically navigates using hand controls. There's other surgical assistance there. And it is performed as a combination of minimal laparoscopic, that's fed through the belly button, as well as surgically up through the cervix to navigate and do all the good snip snip stuff. I'm very articulate!

Lauren: (laughs) I was actually thinking that's a pretty accurate description!

Ariel: Snip snip stuff! But, I mean, I loved it because I'm very into giant Macro Bot and anime piloted by like young, plucky individuals. So I just kept telling people, it's the Gundam surgery. So it went a little bit haywire, though.

There weren't any complications necessarily during the course of the surgery. But the aftermath of the surgery was pretty devastating.

My surgeon was beside herself, couldn't sleep a wink since she got my pathology back and called me back in to look at it. Because the pathology came back and showed things that all the previous testing from my smear test and my imaging … which had been done by a different department than her, so it wasn't she who performed these tests … she relied on these tests being made available to her, and relied on these results being interpreted correctly. But they hadn't been, because ...

The feedback from the test indicated that I had deep endometriosis that had gone at least into the cervix itself — which is very abnormal, not something that the endometrium should be doing.

And it also showed very abnormal cell growth over all quadrants of the cervix itself. There were active and collapsed cysts all over the Fallopian tubes and the ovaries themselves. It was a mess, essentially.

Lauren: So with the hysterectomy, you'd only had your uterus removed, right? And the other stuff was still intact?

Ariel: ...

I had a total laparoscopic hysterectomy ovarioectomy. This is considered not standard for gender affirmation surgeries; they typically like to recommend that you leave at least one of your ovaries behind to produce hormone. But because of the severity of my symptoms, and because of my desire to proceed with other types of reconstructive surgeries, we made the executive decision to just get rid of everything and then measure the consequences of whether I would need any kind of additional hormone-related support.

Lauren: And you thought it would be simple, but …

Ariel: We all thought it would be simple, but the aftermath was a mess. And it all came down to the fact that those initial tasks had not been performed or interpreted correctly. And because they hadn't been performed or interpreted correctly, now there's a slight risk … and by a slight risk, I mean there is a very real reality that there could be active endometrium still growing, and there could be continuing abnormal cell growth. So the onus is on me now to keep up with that through future imaging and testing, and putting faith that these things are going to be interpreted correctly and performed correctly.

Lauren: So you don't have any interest, or your doctor hasn't advised, to have the rest of your organs removed as well?

Ariel: It was recommended to me immediately that I very seriously consider having a vaginectomy done as soon as possible. That wasn't an original part of my plan. But it may wind up having to be a part of my plan.

Because as it sits now, I'm in a position where I currently don't have insurance now, but when I do get insurance again it's going to be imperative for me to keep my gender marker aligning with the gender that’s typically associated with these health care treatments.

Lauren: Right. So that's difficult emotionally, isn't it? Because that's something that takes away from you, your gender affirmation.

Ariel: Exactly. I feel like I'm sitting and playing the waiting game essentially.

Because, strong misconception with endometriosis … people assume that a hysterectomy is equivalent to a cure. It’s treatment, but it's not a cure.

Same thing with ablation, same thing with any kind of surgical intervention for endometriosis. Because the thing about endometriosis is that until you have a laparoscope to identify the growth, endometriosis is considered a prospective diagnosis and not necessary an affirming diagnosis.

Lauren: I know. That drives me up the wall, that. Because so many people live in pain because of it. And the idea of having an invasive surgery in order to confirm a diagnosis that they already know from every other angle, is just even more pain and more suffering that you have to go through with something so painful.

Ariel: Exactly, exactly.

Lauren: So are you living with pain now, because of the endometriosis?

Ariel: I still live with pain, and I attribute a good portion of it to endometriosis because I do feel pain in regions that I felt pain previously, connected to the remaining organs in that region, the remaining pelvic floor. I still have intense pain in my pelvic floor; I feel like it's dropping constantly, I still get cramps, I still get bloating. I still get the whole nine associated with endo, even though I don't have the initial uterine compound.

Lauren: So aside from the fact that it's already causing you discomfort, it's also something that is still interfering with your self-identity.

Ariel: Oh, absolutely. It's a permanent aspect of who I am. And that’s definitely the case with other people who have gone through the same process as well. As well as other people who have no interest in pursuing bottom surgery, because ...

It's, by and large, a very difficult surgery to access when you've already progressed to a certain point in your transition. But it's also a very difficult surgery for most women-presenting persons to access anyway, because we have a huge misogyny problem in the medical field.

Lauren: Yeah, absolutely. So this is something that's sort of a TBA, I guess …,we'll know when, with future imaging, you're able to have the rest of these cells removed. But obviously it will be a bigger surgery then. And it won't be as simple as the keyhole, which was a very important part of the decision for you  … that you thought you could do this with minimal scarring. And this may involve something more extreme, which could have long-lasting effects.

Ariel: Exactly, because one of the very first things that my surgeon had told me was, had I seen these results beforehand, had that original imaging and testing been properly performed and interpreted … she would never have even considered me a candidate for minimal surgery. It absolutely would have been a surgery that would need to have been performed with much more invasive techniques, in order to operate with the best confidence and authority that everything was taken care of. And everything was managed.

Lauren: Gosh, you've been through it. And that's not all, though. You're a triple quadruple winner here! In the midst of all this, you also have a cluster B personality, right? So can you talk to us about that?

Ariel: Definitely. The terminology associated with being borderline is one of those things that you see very early on. If you're even remotely into books, movies … anything that has to do with like, the Crazy Ex-Girlfriend trope, or the Girl, Interrupted trope. If you grew up in the ‘90s, and you watched TV After Dark, and you saw reruns of Single White Female … the whole concept of the cluster B personality is there, and it's scary. It’s a monster trope. It's a horror trope. The language was first introduced to me as something for me to be familiar with and be comfortable with by my therapist who I had been seeing. We were in our second year together by that point, and he had to write some paperwork as a recommendation for me to receive support. We have a full transparency disclosure relationship in terms of how we work together and how we work with one another. And before he gave me the copy of that recommendation, he said, “I don't want you to think too deeply about what this word says. Or even what it means. What I want you to think about is that this is a frame that we use in order to provide the correct treatment for you.”

Lauren: And that's a frustrating concept in and of itself, that the medical industry has to be told something that doesn't seem necessarily true to you, in order for you to get treatment.

Ariel: Exactly.

Lauren: So can you tell us what it's like? And how you have sought treatment?

Ariel: Yes.

So, one … it's scary as hell. Mostly because, to the outside world looking in, we are the monster. But to actually be living here in this house … it’s living in this house with the monster. And I am an accessory by proxy of the fact that I share space with this monster that is a disordered personality.

The jury is still out as to whether cluster B personalities, as a whole, are hereditary. Because this is definitely something that's seen within generations and even amongst siblings. But there's also the theory that it can be created by trauma, or also that it is hereditary but it's triggered by trauma. Regardless of where it comes from, there’s a lot of debate and a lot of pathologizing about how and why. But there's not a lot that's available for providing support.

Lauren: For the ‘what’.

Ariel: Exactly. There’s not a lot going on there. I think the best resource that we have right now in terms of being a universal resource that's appropriate and accessible for the loved ones and carers of people with borderline, and people who live with borderline and their therapists, is the book, I Hate You — Don't Leave Me, which just has the most charming title in the world! But contrary to the clickbait title, it is a really great resource in terms of universalizing and normalizing the ups and downs of living with a personality disorder, especially in terms of how to communicate and how to humanize the process of what's called splitting.

Splitting is what happens when a person with a personality disorder hyper fixates on either a person, an event, an object; and they oscillate between feeling overwhelmingly positive emotions, or overwhelmingly negative emotions. And splitting can happen instantly. Or for the most asinine of reasons.

It could be as simple as being used to talking to a person every day, but then, one day, that person can't come to the phone, or can't respond, or can't meet you, or can't be there. And it just immediately flips the switch into negative and catastrophic thinking.

Lauren: Does that mean that you function better with structure, in general?

Ariel: In general, I function much better with structure. But it can't be overly structured. Because if it's too overly and finitely structured, that gives more opportunities for things to go wrong. And if things go wrong, everything collapses.

Lauren: And so how have you been managing the personality disorder on a day-to-day basis? Are you taking medication? Are you using cognitive behavioral therapies? What are the various treatments that you've been using to cope?

Ariel: ...

Cluster B disorders are notoriously medication resistant. Because it's difficult to determine whether it's most like an anxiety disorder, or whether it's most like a traumatic disorder, or a depressive disorder.

So usually what winds up happening in terms of medication therapy is treating the individual emotional symptoms that come with it. So you might be on several antidepressants, you might be on several antipsychotics, you might be on several anti-anxiety medications. Personally, I don't have any medication therapy that is directly associated with it. But I do take medication therapy associated with my bipolar 2 diagnosis. I take mood stabilizers. I've taken antidepressants. In the past, I've taken antipsychotics and anti-anxieties. Medication therapy alone, I will say, is not the most useful thing in my toolbox.

The best part of my toolbox has 100% been the skills that I've workshopped with my therapist.

I’ve been with my therapist for the same amount of time that I've been with my partner; we've been together for six years.

Lauren: That's very good, because in a way, it gives you the opportunity to loop your partner into the way that you're retraining yourself.

Ariel: Exactly. He's been there since day one. So both of them have essentially been there together and have worked in their own tandem team, in addition to me and my therapist working in tandem.

We use a combination technique of CBT, cognitive behavioral related skills. But we also use skills from a school of therapy called dialectical behavioral therapy (DBT).

And what makes dialectical behavioral therapy different from most other types of therapies is that it's about normalizing, de-escalating, and confronting difficult emotions in very blunt ways. And very direct, communicative strategies to address that negative feeling. It's very much geared towards addressing, first and foremost, negative feelings — because those are the most averse and damaging. But those same techniques can also be used for overwhelmingly positive and manic feelings. Because those are also equally damaging. People don't think of them as being damaging, because with particularly a borderline personality, the same passion that creates that irritability, that hate, that anger, that distress — is also what creates being hyper-focused, passionate, organized … able to invest a lot of time positively into creating art; productive work.

Lauren: So we see a lot of these facets of your personality as assets. And actually, they are associated with the personality disorder as a whole. So it's about managing all of them, isn't it?

Ariel: Exactly.

Lauren: But I mean, it's wonderful that you have your partner looped into this because I imagine that means that in your very close relationships, particularly with your partner, that you're able to rely on one another to sort of call it out when it's happening or redirect in a way that's more positive for you.

Ariel: Definitely. We are definitely opposites in terms of our vocabulary and our personality types. He has a very blunt and very basic vocabulary approach to a situation, which, in many ways can be used as a force of good … but sometimes when he doesn't contextualize himself, it can add fuel to the fire. So it’s been just as much a process of him learning how to navigate that as well.

But taking the time to learn how to navigate that has made him absolutely my best ally and advocate in virtually every social situation. And people are more inclined to take him seriously because he's a larger … as far as the eye can see, emotionally stable … cisgender man. And it's not fair. And it's not right. But that's the way that it is. But he having that very rudimentary vocabulary, having a very monotone even-keeled voice, and the enormity of his masculinity … makes him my life preserver out there in the storm.

Lauren: That's a very good turn of phrase: "the enormity of his masculinity". It's so true, isn't it? And given everything that you've encountered — just medically, let alone in the wider world in terms of self-perception and the way other people are perceiving you — that's also something that we encounter constantly on a daily basis … that the people who are going to be heard and seen first are those people who identify most obviously as cisgender males, and white cisgender males at that.

Ariel: Definitely. It’s the same concept when somebody goes to the car lot, that they should always go with their big dude friend, even if their big dude friend doesn't know anything about cars. It's just the fact that the enormity of his masculinity being there makes the car mechanic or the salesperson feel pressure that if they say something misleading or wrong, the big guy is gonna be able to use his authority to counteract that.

Lauren: And that's what it is. It's authority. It's an authoritative presence.

Ariel: Exactly. It’s all a game.

Lauren: We're going to get into that in a second. But I just wanted to briefly bring up that the silver lining to all of this that you've been through, is that you have a wonderful service dog, Caliban, who many of us will be familiar with through your social media handles. But Caliban, I imagine, has also really humanized a lot of this journey for you and given you an additional ally with a really wonderful nonverbal relationship.

Ariel: Definitely. Prior to Caliban, my leaving the house was not a thing that was happening. I was making attempts to be out of doors; I was making attempts to try to go back into the workplace. Prior to Caliban, I did have another dog who's still in this family and is still very loyal. But he wasn't trained for public access, because that wasn't a thing that I was doing with my life because of compound trauma. And because of learned fear and aversion of social situations and of being outside of my own space. It wasn't a thing that was happening.

So Caliban was my guiding point to get back into the world. He's my chaperone, everywhere that I go. He's my mediator for basically any social convention. He is also my sort of lifeguard intervene with any kind of psychologically damaging or physically difficult situation that I encounter.

Lauren: 'Cos they get it when nobody else does.

Ariel: They do!

Lauren: Especially the dogs that have been trained for service in that way, too.

Ariel: Yes, I just mentioned this in a post that I posted today, because recently, the vegan community and the service dog community intersected in a very unfortunate way. It's not the first time that this has happened. But in this particular circumstance, a large animal rights organization that defines itself as being an abolitionist vegan coalition …

Lauren: I think we all know which one you're talking about!

Ariel: We all know which one I’m talking about! I’m being vague, though, because I don’t want to generate kickback to them.

They made the boorish claim that service dogs are antithetical to veganism, because the cause of using an animal for any human work is considered unethical. Dogs have an innate sense of wanting to support other creatures that they identify as being part of their families.

Because even though dogs haven't been wolves for thousands of years, they still have that basic mentality.

Lauren: That pack mentality. They want to know someone's boss.

Ariel: It’s very old-world. Caliban is very much like the rest of my Latino relatives … family comes first. And with the two of us, I'm family, and I come first in his mind's eye.

Lauren: And that’s so important, too. And that's one of the huge roles that service dogs play. Because they're not just helping physically … but on an emotional level, they're prioritizing you in ways that sometimes other people get too busy to prioritize. So you have this creature who will always make you the priority.

Ariel: Oh, absolutely. My partner works; he can't be around all the time. My therapist has other clients; he can't be on call to me. Same thing with my primary doctors and my specialists. Folks who do have the opportunity to have home health care, anybody who was home health care can tell you, you can be waiting up until midnight for a nurse to come. And there just are not those opportunities to have somebody there as a bedside nurse, day in and day out.

And with a dog, they can be attentive and on call. Because dogs sleep a majority of their day, they always have energy to be there to support you.

Lauren: And plus, there are snugs. And we can't deny the power of a snug!

Ariel: You most certainly cannot deny the power of the snug!

Lauren: We obviously talked about it … you're openly transgender, but you identify as agender. Can you talk to us a bit about the overlap between the way in which disability and invisible illness and gender have played a role in your life?

Ariel: Absolutely. Just to define agender for your listeners … who … this could even be their first time hearing about trans people.

Lauren: You are certainly the first person, I think, who has been on the show who identifies as trans. So it's quite a milestone for us both.

Ariel: I think so, because you've had other folk who’ve come on who identify as either being gay, lesbian, or bi. I think I am most certainly the first openly trans person that you've had so far on this program. Which is a privilege.

Lauren: It's a privilege for me as well. So, thank you.

Ariel: Of course.

Trans people, as a whole, can be identified as individuals who are assigned to one perceivable gender — who later make a conscious decision that they no longer identify with that assigned gender. Regardless of whether they choose socially to transition, to medically transition, to surgically transition, it’s that conscious decision that ‘somebody told me I was this, but I know I'm not that’, that makes a person trans. It is that simple.

Which is a largely unpopular belief in many circles … but we won't get too deeply into that.

Lauren: One thing I will say, as the host of this show, is that it doesn't matter what anyone else thinks except you. So if anyone's listening and you don't believe that transgender people exist, you're living in another world! And everyone has the choice to be whoever they are. And a show about any kind of inclusion has to include a discussion about inclusion in terms of identity in every single way, including gender identity.

Ariel: Definitely! So usually when a person identifies as trans, they say, “Well, somebody told me that I was a lady, but I know I'm not a lady … ergo, I must be a man.” However, that followup didn't exactly happen, that little part of the logic problem.

I know that I identify with certain aspects of masculinity. I also know that I identify with certain aspects of femininity. I also know that I strongly dis-identify with many things associated with both of those traits all together. I don't really have the language to encompass exactly what my gender is, or how it would be perceived by other people. But there's a term that exists called agender, which is considered part of the non-binary spectrum.

Non-binary encompasses not only agender, but also bigender people who identify as both. Gender queer people who identify perhaps as one, but also the other at another given time. It also encompasses demi-genders, where a person might feel somewhat masculine, or somewhat feminine. But also largely something else.

But for me, none of those things particularly fit, but agender gives me a space where I can take things on a case-by-case basis and make a self-determination about what masculinity means to me and what femininity means to me. Practically speaking, I've tried using gender-neutral pronouns before; they were my preferred pronoun of choice, from my early 20s, all the way through my mid 20s. In my previous life, I was an English major, and it was an uphill battle trying to argue with my peers about the legitimacy of a singular, gender-neutral pronoun.

Even though, one, they used it all the time in their everyday speech. And two, it exists in the etymological canon, as far back as when the English language became recognizable to what it is today — that Shakespearean language …

Lauren: Which is, of course, associated with a certain cultural expectation. Because, as far as I understand, in other cultures … I think it's in Native American culture … gender is a lot more fluid. And so depending on what culture you come from, as well, that could determine how … or perhaps not living in this modern Western world, but in times past, for sure, it would have had an influence on the way that one was even brought up to see gender. And I say, “see” quite pointedly, because a lot of this has to do with what other people are perceiving from the outside, and what you're perceiving from the inside — and the overlap of invisibility there between what you understood, and what other people were recognizing, correct?

Ariel: Absolutely. I come across this on a relatively daily basis when I interact with other people. Because, depending on the gender biases of the people who are looking at me, some people might more readily identify the feminine aspects of me, but other people might more readily identify the masculine aspects of me. So it's never consistent from person to person who I interact with.

I gave up trying to use the singular “they” pronoun. Not because I disagree with it in any way, but because with everything else that I have on my plate, it was not a hill that I was ready to die on.

For practical purposes, I use masculine pronouns. And I present in my day-to-day life in a very masculine way. Because that's just the easiest and most comfortable uniform to wear for social situations. And I think anybody who is part of any suppressed minority background who’s ever had to do any kind of code-switching will understand where I’m coming from with that. Sometimes in a dominant majority mindset, you go with the flow, and you perform in the most …

Lauren: Recognizable way.

Ariel: Exactly. The most consistent, recognizable way, so that you are as most virtually invisible as possible, so that you avoid conflict.

Lauren: And you’re also trying to speak someone else's language, so they'll get it!

Ariel: Exactly. Some things aren't worth dying for. And some things aren't worth alienating yourself over. And that was one of those things.

Lauren: Yeah. And what you're saying about not dying on that hill … it's very literal, as well, because there's so much violence perpetrated against people in the queer community and the gender queer community … anyone who's not cisgender and identifying as what they appear to be. There can be so much violence perpetrated against that community. So, being that you're a part of that, and that you're aware of that, has obviously been behind your choices. And that's an emotional trauma that you're going to have to always carry, isn't it?

Ariel: Oh, absolutely. And it's nothing new, it’s most certainly nothing new. Because we're coming up on the 50th — or rather, we just passed the 50th anniversary — of the Christopher Street liberation uprising, which we now know as the Stonewall Uprising, or the Stonewall Riots, depending on who you talk to. But that campaign, or rather that event, was just a touchstone in queer rights and queer liberation. Prior to that, Marsha Johnson and Sylvia Rivera had already formed the STAR group, which was the Street Transvestite Action Revolutionaries. And that was one of the first trans organizations for New York City. That came several years after previous, very public and high profile incidences of conflict in the queer community versus the dominant majority. But what made STAR unique was that they were a platform not only for LGBT-identifying people, but because of the significant overlap with the disabled population for New York City.

Marsha Johnson herself had several debilitating physical and psychological illnesses. Very often, cops and public officials used that to disenfranchise her because they’d point out the fact that she had a history of mental illness and had been previously identified for that. But she had a calling card, and it was, "I may be crazy, but that don't make me wrong."

One of the platforms of STAR was that they demanded that disabled people as a whole — all disabled people, not just LGBT-identifying disabled people — have free access to whatever therapy, whatever medical resources, whatever doctors that they voluntarily chose.

Lauren: Isn’t that a nice idea. If only!

Ariel: Right. That would be great. But doctors at the time … this was still several years before homosexuality had been taken out of the DSM as a mental illness. And we would still see again, decades later with the AIDS crisis … and still today, where homosexuality is seen as a risk factor for immune disease and for physical disease associated with gastrointestinal or urogenital problems.

That's f*cked up that here we are in 2019, and gay men still can't donate blood.

Lauren: That’s a real travesty; that's a major problem.

Ariel: Oh, absolutely. And even my partner, when he went to his first GI after he was diagnosed in the hospital with ulcerative colitis; he went to the GI to follow up. He indicated on the paperwork that we were married, and that I was his spouse. And they recommended to do an HIV test, which is not considered something that's part of a typical stool sample, or anything like that. That's not part of a screening for GI. HIV tests are important. It's important to stay tested and to be aware. But it's hugely presumptuous that the second that they saw that he was in a gay relationship, and that he made reference to his masculine spouse, they said, "Oh, have you been tested for AIDS?”

Lauren: Yeah, that's a real shame, the presumption involved there. That's the queer assumption; it’s the gender queer assumption. It's like, no matter how you identify … the minute that you say that you're in a relationship that leans a certain way, they're going to perceive you in a certain way in the medical industry.

Ariel: Exactly. When I had my imaging done before my surgery, I went in there and the techs at the radiology lab were terrified. They had no idea what equipment to use, what kind of scan they were doing. And they didn't think to ask me. They just made a presumption and changed what type of pelvic exam they were going to perform on me, because I guess they didn't think that my doctor knew best. They made a presumption just by looking at me about what kind of exam I was going to have.

Lauren: And this just highlights the kind of prejudices that people carry, whether or not they think they do. Because these could have been perfectly nice people, right, who just f*cked up when they met you, and when they tried to communicate with you. And it's as simple as reaching out to someone and saying, “What can I do to make this experience better for you?” Or, “Can you tell me what the right equipment would be to use for you, and what would be more comfortable for you?” Especially in terms of comfort in a medical setting.

Ariel: Exactly. The University of Iowa came up with an acronym to use for medical professionals to engage with their trans patients. It's called TRANSCARE. I'm not going to spell out every single letter because that would be pedantic and boring!

Lauren: Do you even have that in your memory bank? Because it seems a long one!

Ariel: Oh, it's very long.

But the overall approach to TRANSCARE is essentially that medical professionals —  doctors, techs, nurses, everybody on board — needs to get comfortable with communicating to their patients. Because patients are terrified as sh*t, regardless of whether they're trans or cis, or whether they're gay or straight. Patients are terrified as sh*t to be in any vulnerable, medically compromised position.

Lauren: And ‘white coat syndrome’ is a real thing. You hear about that all the time.

Ariel: And you hear the term ‘medical PTSD’ coming up a lot more. I don't know what to make of that word just yet. I still don't know how I feel about what it means to people. But the consensus is that the onus is on the medical professional to create an affirming and safe environment for the patient, no matter who the patient is.

Lauren: And that's the thing … in medical school, doctors aren't really taught bedside manner. That’s never been a focus of the training; the focus is more on providing the care. Which is fair enough, because their job is to be scientists. But by the same token, we really don't take into account how important bedside manner is, and how that is going to affect every medical experience that someone has. Particularly if it's someone who's dealing with gender identity representation issues that may be beyond the scope of your average person's understanding. Which by the way, should not be beyond the scope of your average person's understanding, either. It's time we just accept that this is a thing, guys!

Ariel: Exactly. It’s been years.

Lauren: Yeah, it’s been far too long.


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