The Ongoing Work of Constructing Identity | The Neurodiverging Podcast

In part 2 of last week’s podcast, Danielle chats with Charlie Ocean, MSW, about the overlaps of neurodiversity and the LGBTQ+ community, and our own experiences understanding our neuroqueer identities.

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Guest Bio: Charlie Ocean, MSW

Charlie Ocean, MSW (they/them) is an LGBTQ+ trainer and community organizer who is proudly neuroqueer and nonbinary. They obtained their MSW from the USC School of Social Work and currently serve as a board member for PFLAG Los Angeles, one of the oldest PFLAG chapters. Charlie started LGBTQ+ community organizing as a youth in 2001 and has been speaking and presenting about various topics ever since.

About Neurodiverging

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Transcript: The Ongoing Work of Constructing Identity with Charlie Ocean, MSW

(Listen to the first part of our interview with Charlie here.)

DANIELLE: Let’s swivel a little bit if it’s okay. I want to make sure we have time to talk about the neurodiversity aspect, and I’ll speak for myself, for me coming to that set of identities later in life, after establishing lots of other identities earlier, really made me readjust or even rebuild up from the ground up, like how I perceived myself and how I understood myself when it came to gender, sexuality, and all sorts of other things as well, other kinds of identities. So I wondered what your experience was like that as much as you are willing to share, no pressure. And, you know, also, if you were willing to share a little bit about how you came to the knowledge of being a neurodivergent person.

CHARLIE: Yeah, well, let’s just dive right in there —

DANIELLE: (laughs)

CHARLIE: …’cause basically, TikTok diagnosed me. It’s almost embarrassing to say, but, like, very quickly, it first threw me into ADHD TikTok, and then I’d say within, like, two weeks or so I was straddling ADHD and autistic TikTok. I was just like, “This is really interesting. I wonder why I’m seeing this stuff?” Like, mind you, I was not looking up any of this kind of stuff previous to that. I’ve known friends who have been diagnosed, including people who were assigned female at birth and all that I thought that was actually really impressive because we know that those stats are not as great, but I never really looked into it very much because there was nothing happening in my relationship with those folks that I was like, “I need to learn more about this.” And it’s not ‘cause I didn’t take it seriously or anything like that it just, again, it wasn’t impacting our relationship in any way that, yeah, it felt like I needed to learn more about it to better understand them or support them. And so, yeah, TikTok diagnosed me, and then I had to quit TikTok. I mean, partially ‘cause of the security issues and also ‘cause I think I learned enough about myself for a minute. That was, like, a lot, that was a big pill to swallow.

DANIELLE: (speech overlaps) Take a break, integrate. Yeah.

CHARLIE: So, I think I went through a range of phases or stages of, like, coming to terms with all of this. I mean the ADHD was easier to embrace because that stuff just felt like it made a lot more sense ‘cause I’d be like, “Why am I laughing at these memes for ADHDers and stuff? Why does this feel relatable?” ‘Cause I wasn’t thinking about my friends when I was watching this, I was thinking about myself (laughs), I was like, “I relate to this.” And then, yeah, the autism, I’d say, was a lot harder just because being someone who’s watched things like The Good Doctor or Atypical or whatever, I mean you just, you think of a middle-class white boy who’s monotone and brilliant in some way, but then socially awkward and whatever and meltdowns and all this stuff so, like, I just, I never saw myself in any of that and so that was harder.

Plus, already being queer and nonbinary and all these other identities, I’m not gonna lie, there was a moment where I was just like, “Fuck!” Because I already know, and I already knew, that the world was very ableist, and so I was just like, now I have to advocate and carve out spaces for myself with these two things, too? And I was not happy about that at all.

Plus, it felt like the joy of it was being able to find community and to have, like, names to this stuff, ’cause I would have never figured out these seemingly unrelated things were causing this for me, like causing this extra work and stuff ‘cause I’d always felt broken, I’d always wondered why I was, like, working harder than everyone else, but I was like, well, it’s probably my trauma and, like, growing up in poverty, and that’s part of it for sure, but it just felt like, yeah, late in life, getting a manual or an instruction manual for my brain and so it was great, but then there was the anger of there have been very specific times professionals could have caught this so that I could have gotten resources and a better understanding of myself sooner, but they failed me and yeah.

But, yeah, I can trace back all the way to second grade. I know the moment that my neurodivergence started being a problem and, like, caused me to just have these weird communication things with, like, especially authority, like teachers, VPs in organizations I’ve worked at, stuff like that, where I didn’t understand why asking for clarification, they were just like, “Why don’t you understand this?” And it’s like, well, I don’t understand it ‘cause I just don’t and I’m asking you for clarification and you won’t give it to me, so, like, you’re setting me up for failure, so, yeah.

So, I’ve worked through a lot of the not-so-great feelings of it, and I’m in a better place now with it, and I’m really proud. And so recognizing and learning that there’s been such an overlap with LGBTQ+ community and being ADHD and autistic has just been really great, because for once in my life, when I find other people who are at the intersection of being neuroqueer, they’re my people, and I don’t worry about masking or things like that. Like we can info dump and it’s good and whatever. I’d say the only bump I experience and I don’t have a solution for is, like, at what point do my sensory needs or something impede on someone else, and then what? Like if I need this thing in a particular space to be present, but someone else needs this thing and there’s not a good spectrum to work from there, it’s like ends up being something that’s very binary and what do we do? And that doesn’t feel great ‘cause, like, I need my needs and they need their needs so at what point does that boundary — Like where is that boundary and then what happens?

So, I’m thinking about — I think one of the best examples I could give off the top of my head is if I need to fidget to stay present and then someone else is incredibly distracted by that. But we’re in a learning space and we need those things and that’s valid, but then how do you accommodate both of those? I don’t know. I shouldn’t be asked to, like, have to go to the back of a room or something to be able to fidget so I’m not within eyesight of people, but maybe that is, like, kind of sort of a halfway point? (stammers) I don’t know.

So those kinds of things don’t feel as great but I’m incredibly proud to be at this intersection, I’m incredibly proud to be a part of these communities and even though I took the queer pipeline first, I would have gotten here eventually. But it’s just sad that I spent so much time thinking there was something wrong with me versus, like, just being able to understand that I need different things, which makes perfect sense to me now, but I just wish it could have been identified sooner.

DANIELLE: Yeah, the competing access needs thing is hard when you have two individuals or groups that need different things to feel okay. And I think we’ve talked about that in the past on the podcast in context of classrooms, really. Like that there’s this push now for integrated learning spaces for disabled and abled people, which is such a weird binary that doesn’t really exist, but that spectrum of folks. But actually in some cases, having an integrated classroom is gonna mess up everybody, like it’s not going to serve anyone in that population. And sometimes we do actually need to split up a little bit, though maybe not by that binary framing that has been historically what’s used.

And I sort of wonder if we need to take a whole new (laughs weakly) set of lenses to the problem of competing access needs and try to figure out like, okay, well, you know, you need to fidget, cool. They need to have complete silence and stillness, cool. How can we rejigger what we’re doing to accommodate both folks equally as best you can? And sometimes there’s constraints, budget, time, whatever, whatever, but really, it should be possible. Like in an ideal world, it should be possible.

CHARLIE: Yeah. Well, it comes back to a lack of resources, right? ‘Cause I’ve been interviewed on podcasts before, and they’re just like, well (stammers) (laughs softly) — I can’t think of the phrasing off the top of my head right now, maybe you can help me refresh my memory, but basically, just, like, being, like, “You’re autistic.” Like, “How do you deal with it?” Like it’s such a bad thing or something, and I have to keep coming back to, like, it’s this terrible diagnosis or something.

DANIELLE: That there’s a stigma to it.

CHARLIE: Yeah, yeah. I forget the exact word they tend to use, though. There’s like a specific phrasing when they say it so — Oh, like, “You’re suffering from autism.”

DANIELLE: Ohhh, yeah.

CHARLIE: No, I’m not, I’m suffering from society. Like, here’s the thing: Yeah, we’re all gonna end up disabled at some point, if not now, and in different ways, but there are certain needs we’ve accommodated, like glasses, stairs. So, it really isn’t that hard to, like, then just further a little bit more and make sure that there are things like ramps and that they do have certain clearance or whatever. Like I don’t think it’s that big of a deal to make sure that anyone possible for that particular space can access it if they need to and not create more additional barriers. Like, why does the burden have to be on me to have to pay all this extra money to get access to the care and services I need just to try to be anywhere near as successful as someone else? It’s just not fair.

I don’t understand why people can’t get with the whole program of looking out for each other is a good thing and recognizing that we all have differences and we all have different needs. Which is why instead of, this is, like, one of the things I talk about a lot, rather than the golden rule, which most of us have been taught at some point, it spans cultures, religions, et cetera, like, “Treat others the way you want to be treated,” like that’s how we operate, and that’s actually part of the problem. But if instead we adopt the platinum rule, which was coined in the 1970s, that says, “Treat others the way they want to be treated,” and that makes so much more sense! Like, not everyone wants to be treated the same. I’m not saying we’re going to roll out a red carpet for people who request that, but it’s just help people get their needs met. I really don’t think it’s that hard for us to pull together and do that.

DANIELLE: It’s not that hard. I also think that there’s this, especially with health outcomes, with disability specifically, there’s this sort of meritocracy idea of like, well, if I do things right, I won’t ever become disabled, right? Or I will never get a diagnosis, or I will never, whatever. And it’s capitalism, right? It’s (laughs) Protestantism. But it’s so baked in that I think people are really — It’s scary to think, hey, I could do everything perfectly, but I still might get disabled, be disabled, especially when I’m older, right? Physical disability is mostly what people are thinking of.

And I think it’s so scary for a lot of folks to have to think through that and break this idea that if I do everything right, it won’t happen to me, that people just won’t, they won’t ever get there. Like, they’re too scared to get there. And I think part of the work is that kind of raising of recognition that, yeah, like it’s nine and a half out of 10 people, I think, is the percentage of folks who will experience disability in their life, whether that’s a quote-unquote “disability” like autism, which many of us, some of us feel is a disability and some of us don’t, but there’s a social aspect to, or a physical disability, like, I don’t know, a vision impairment, which we can support with glasses or a physical impairment that we can support with other movement support. I can’t think of the word for, like, wheelchairs and —

CHARLIE: Yeah, mobility aids.

DANIELLE: Yeah, mobility aids, thank you. Something that really struck me that you said, like, possibly a whole 15 minutes ago, so I’m sorry —

CHARLIE: (laughs softly) That’s okay.

DANIELLE: …was the word broken. That when you — I don’t want to misframe what you said, but that there was this experience of feeling brokenness. And one of the reasons my brain latched on is because I’ve heard clients use that word, and I think I’ve even used that word in interviews before in terms of how I felt around being neurodivergent, before I knew I was neurodivergent, that I was just a broken, neurotypical person. But also around, in queer folks, I hear people use the word broken a lot in terms of I’m a broken straight person or cis person before they come to the recognition of themselves as queer. And I’m just using that word as a broad spectrum because I will mess up if I have to say six words ‘cause I slur and all these things.

And to me, when I heard you say that, my brain kind of went that right there, I think, is part of the intersectional piece of neuroqueerness that there is — and I’m sure in lots of other identities, too, but there is this sort of feeling, that sort of punk feeling of not fitting into the norm and needing to do something different in order — and find your people, in order to feel not broken and to feel like, actually, I’m a whole human being. I’m capable, I’m autonomous, you know. I can create a collective and a community in this unbroken space, but you have to, like, come to this awareness of yourself outside of the norms before you can do that.

CHARLIE: Well, and then — I mean so many people treated me like I was a problem. I was heavily bullied for a number of reasons, but the only time it was embraced when they saw how they could take advantage of it. And what I mean by that is, by the time I was in 8th grade, the school and the 8th-grade council had caught wind that my ADHD ass knew all sorts of things, like how to make it so that we could do karaoke and have like a competition, and I was DJing parties and all this stuff. So once they figured out I could do all that stuff, then it’s like, “Oh, we love you!” and then the bullying started to subside. So, it took me showing that I had any sort of value to you? You just couldn’t inherently believe in my worth and dignity as a human being? So like absolutely.

And then it’s also a very capitalist way to look at people, but also, your point: I’ve been trying so hard to come up with a new initialism, or ideally an acronym to help talk about the LGBTQ+ community, because I know not everyone embraces queer, which would save a lot of us I think, but I want to come up with something, and I’ve been having a heck of a time finding a way to make sure I’m including everyone in that who wants to be included. But —

DANIELLE: It’s a challenge!

CHARLIE: …part of it, what has been driving it even more so is, I think, the longer the initialism gets, I think the more ableist it is ‘cause I don’t think it’s accessible. And this is the first time I think I’m saying that publicly, but I wholeheartedly feel that way and that’s one of the driving factors for me trying to come up with a new one. So I did, but I’ve been getting some critique about it, so I’m trying to go back to the drawing board on it. I’m having a heck of a time to make sure that everyone who sees themselves in this particular community could see that in that new — I think an acronym will be best, so it’s easier for people to pronounce.

But, yeah, I do. I think it’s incredibly ableist. I’m not saying don’t include and make sure we include people. And I know that a plus sign is temporary, and it’s not going to make everyone feel good that they’re just part of the plus. It’s like, well, then what falls under the plus? But I do want to find a way to get there. And that’s the other thing, too, is like, again, if we’re looking at the platinum rule and embracing that, not everyone’s gonna use the same language. But I don’t want to use terms that we’ll see that are academic, like a marginalized sexuality or something. Like, I don’t — Gender and sexuality minorities. Sure, you can use that academically, but that’s not what I’m going to walk around calling myself.

DANIELLE: No, and I also think using the term marginalized centers the people we’re not trying to — Like, it centers the people in power. And it’s like the people in power are already centered! I don’t need to recenter them, I need something to talk about everybody else. And I get stuck on (mutters) — I am sort of a brain kind of person, I think a lot, I’m kind of cognitively — Like, that’s how I interpret all the stuff that comes into my body and my brain is through — And I think the use of how we use language is really important, but I also find perhaps just as somebody who doesn’t particularly like social media and stuff, that people use language to exclude more than they use to include. That if I use a certain word that somebody doesn’t like because we’re, say on Instagram, a worldwide platform, right? There’s gonna be a word that’s super common where I live, that it means something totally different somewhere else, and you can actually talk to me about that, like, as a human, where we’re trying to understand each other and collaborate together, or we can fight about it, which doesn’t really serve anybody from my perspective.

And I think there’s also this challenge with this kind of binary thinking. Well, one way to say it is that a lot of us, when we’re coming to understand how we want to identify, we’re creating an in-group and an out-group, right? We’re saying I’m this kind and you’re this kind. And those labels can be important for understanding our identity, but also over time, those labels become exclusionary, they become binary, right? And that’s not to say that a label is never useful, but that there needs to be space in our framing and our wording to both identify ourselves and still recognize that there’s a spectrum or there’s an umbrella of however you want to, whatever kind of word you want to use there, to include folks who aren’t quite in the identifier and aren’t quite out of the — Like, it’s too easy to get stuck in these binaries, I think.

But that’s really hard practically when you’re working with individual, real people who need individual, real solutions to problems. You can’t just be like, you know, “Well, you’re autistic, so,” and, “You’re not autistic, so,” or, “You’re queer and so,” and, “You’re not queer,” or, “You’re trans and so,” or “You’re not trans and so” — it’s just not helpful. So, I don’t know. I get really stuck up on that, so part of me really likes the idea of having a term that embraces everybody, and part of me is like, but then what about the people outside that term? There’s always going to be some that are sort of the edge cases, maybe. I don’t know.

CHARLIE: Yeah. Well, it’s also —

DANIELLE: So I get a really stuck.

CHARLIE: Oh, same.

DANIELLE: Very autistic of me (laughs softly).

CHARLIE: (speech overlaps) I mean that’s why I stopped using trans. No, same. We create this hell for ourselves sometimes, but, yeah, no. Not this last September —

DANIELLE: Sorry, that got me really good. We do create (laughs) ourselves.

CHARLIE: (laughs) Like last September, I stopped using trans to describe my experience because, yeah, to me, it creates another binary that I don’t think we need, and also because it continues to conflate sex with gender, which people are already confused about. So, I feel like telling people, well, my assignment at birth doesn’t align with my gender identity now or however you want to say that, like who needs to know that?

DANIELLE: It doesn’t matter!

CHARLIE: That’s going back to the whole genitals thing, so one needs to know that. So, to your point, that was the feedback I got is the acronym I came up with is just too encompassing. So, it’s SOROGI, meant to rhyme with, like, pierogies, but it’s sexual orientation, romantic orientation, gender, and then intersex. And the reason gender being, like, standing in for gender identity, gender expression, and then intersex, because there are folks who are in their intersex community who consider themselves to be part of the LGBTQ+ community and there’s folks who don’t, but I wanted to separate it, like, out based on what we’re talking about. And maybe there’s stuff I’m missing there, but people felt like it wasn’t inherently queer enough or whatever, and, like, I agree.

So, like, they saw the plus and the minus of it. The plus being, well, it does expand it to more people, and the minus being but it’s not specific that it’s also, like, queer and trans people or LGBTQ+ or whatever. And I’m like, well — So, the phrasing would be like people of SOROGI experiences, but then I wouldn’t say SOROGI people, I would say specifically who I’m talking about, the same way that, like, we might say people of global majority versus queer people unless we’re specifically talking about people who embrace and identify with queer. But yeah, saying, like, the specific people and not always lumping us together. And I’m not saying, like, I’m also trying to give a point to those who are part of the lesbian, gay, and bisexual communities that are very anti-trans, nonbinary and stuff, and like, “Get away from our movement, we’re different,” ‘cause there are folks like that.

DANIELLE: Oh, yeah.

CHARLIE: It’s just hard ‘cause then, like, part of what works with the initialisms — and this is the last thing I’ll say for now on that — but part of what works is if we look to our neighbors to the north, like they include 2S for two-spirit in their initialism, usually right at the very beginning. So, I think when I teach on this kind of stuff and I talk about how you can figure out which language to use, there’s a lot of different methods. Like, one of the things is geographically what’s being used to honor certain cultures, et cetera, but also you want to reflect the language that people are using and want to use, and that’s gonna change over time and that’s cool, but, yeah, like, it also can show people’s priorities.

So, there was a period of time I worked with the folks who organized Los Angeles Pride, and because I was their second-ever Outstanding Youth honoree awardee, they realized that their categories weren’t always inclusive because I was, like, one of the first nonbinary people that they were coming across and so they started making changes, and they actually changed, temporarily, their initialism to TLGB because they wanted to emphasize that while they’re showing up for the entire community, they realized they need to focus a lot more on the trans community because of all of the hate crimes and everything and just how much more discrimination we might experience, especially at certain intersections. So, I think it can also show and reflect, like, cultural values and who you’re choosing to put first. But, yeah, there’s just a lot to say on that, we could talk about this forever —

DANIELLE: Oh, yeah.

CHARLIE: …but it’s challenging.

DANIELLE: Yeah, yeah. And I think — I don’t know that anybody could come to a resolution, right? In any amount of time, but rather just to point, kind of gesture in the direction that it’s complicated, it’s located specifically in certain geographic places, cultural places, language places, you know, and that’s kind of the case whether you’re talking about sort of queer issues or, say, neurodivergent — Like, I’ve talked about how in some places autistic is what we prefer, in some places, geographically, people with autism is preferred. That’s not the case in the US, but it doesn’t mean that this is a case of, again, you put it on Instagram and somebody somewhere will be like, “Well, where I live, it’s this.” And it’s like, that’s awesome, that’s cool, but there can be both, right? That there can be localized language for certain kinds of concepts and ideas and places of relationship and also less localized language. Like we’re aiming towards the universal language, we’re not there yet; Universal language is really hard.

CHARLIE: Yeah, that’s why when I teach on this kind of stuff, I say hold space for both of those to be true. Understand there are gonna be people who prefer disabled, and there’s gonna be people who prefer person with a disability, and just mirror what your local community says. So, if you have local LGBT centers and maybe use that initialism, right? Or, like, see what the queer, et cetera organizations around you are using, and then ask your own employees or the clients you serve like what language best reflects their experiences and just adopt that and understand it’s going to change over time. Like, it was a massive deal, and it was, I would bet, incredibly expensive when the LA LGBT Center used to be the Gay and Lesbian Center and then changed their name.

I know people think that’s an easy change; it’s really not. I say that as someone who’s about to change, legally, their name for the second time and the last time ever, like it is a paperwork nightmare, it’s expensive, there’s a lot of hoops you have to go through — it’s not that easy. But, I’m glad they did that because their services had expanded so much you would have never known they had, like, a trans health clinic and things like that. So, yeah, we have to change.

And so that’s why I also say understand this is true right now, and because of cultural changes this information can change at any point, but right now these are the best guidelines and this is the language to use. And again, hold space that there are going to be people outside of this, and that’s okay. Then just use what they’re preferring in that particular case.

But there’s easy ways to set this all up so it’s not — ‘Cause I imagine there’s maybe people listening right now that are like, “Okay, but that’s impossible, how are you going to do that for everyone?” It’s like it’s really easy, actually. A lot of it is using gender-neutral language and then asking people what they prefer, and then, like, if you’re a doctor or something you could just put it in their chart. Ask them, “Are you sexually active?” Versus assuming there’s — Which, you know, holds space for people who may be asexual or (stammers) whatever, and you’re not, like, putting a particular partner. You’re not saying how many partners they may have. Just, you know, you’re starting there, and then the person can share to their comfort level, and you can share why you’re asking. It’s like, “Well, trying to see if there’s any chance that you might be pregnant,” — whatever, and just get to it! Just ask people, let them know why you’re asking.

DANIELLE: Yeah, I think that directly — I mean, as an autistic person, of course, I really like direct language and try to help folks learn how to use more direct language, well I think a lot of times politeness norms are such that we’re not asking the thing we mean because we think there’s something rude about it. And really asking the thing you mean is most likely to cut directly to supporting the person. You know, saying, “Could you be pregnant?” “Should we run a,” — Just to run with your metaphor, “Should we be running an STI panel?” You know, “Do you have any questions about this kind of stuff?” It really just cuts straight through to what the concern is, and it lets you establish rapport with that person in a way that wouldn’t happen if you were like, “Well, how many partners do you have?” and, “What’s your genitalia like right now?” (mutters) So, yeah, I just very much agree.

CHARLIE: I mean that stuff can be important to certain extents —

DANIELLE: Oh, yeah!

CHARLIE: …and, like, you can always get there, but, yeah, don’t ask me, “Have you had surgeries? Which surgeries have you had?” when literally all you’re trying to understand is how have I previously been under anesthesia?

DANIELLE: Exactly! Just ask that.

CHARLIE: Just ask that then! You literally don’t need to ask me all these invasive questions and then I have to tell you why I had these surgeries or whatever. Like why I have a flat chest — No! If that’s the real thing —

DANIELLE: It’s irrelevant.

CHARLIE: …you’re trying to get to, just ask that. And I can tell you I do just fine. So far (laughs).

DANIELLE: (laughs)

CHARLIE: That’s it!

DANIELLE: And hopefully into the future as well.

CHARLIE: Yes. Fingers crossed.

DANIELLE: Thank you so much. Can you let folks know where people can find you, hire you, learn about, you know, all the stuff you do?

CHARLIE: Yeah! I think the easiest way to find me is to go to hicharlieocean.com. Like, hi like hello to somebody, not high like a play on living in The Mile High City or something else related to being in Colorado and things being legal. But yeah, that’s probably the easiest way. And almost everywhere, including LinkedIn and Instagram where I spend the most time, it’s hicharlieocean.

DANIELLE: Awesome, thank you so much. And there’ll be links down below, folks, so please go check them out, we really appreciate it. Thanks so much for being here today! I really appreciate it.

CHARLIE: Yeah, thank you so much for having me on. I’ve been really looking forward to this, so, thank you for the honor (speech overlaps) —

DANIELLE: I’m glad it worked.

CHARLIE: …and it’s been wonderful. Yeah, to —

DANIELLE: Oh, good!

CHARLIE: …just connect and get to meet you. So, thank you.

DANIELLE: Same!