Episode 10: But you’re “functioning”?
Courn: This is Neurotakes. I'm Courn.
Chase: This is Chase.
Courn: Let's get into it. So Chase, do you feel comfortable calling yourself disabled as an ADHD person? I'm curious to know.
Chase: I mean, it's gonna sound bad. ADHD does count as a disability, right?
Courn: Yeah.
Chase: Okay. But not in like the traditional way you would think of conventional disabilities.
Courn: Yeah, I mean, there's millions of ways you can define disability.
Chase: Do I? I mean, like, there's probably some hidden stuff that I haven't dug up. Yeah, I don't actively go around saying I'm disabled mostly because society accepts ADHD in such a way. It's like a weird acceptance and like I'm not physically disabled. So I feel like I'm taking up space but also we talk about all the time like using that as an excuse of like, I don't want to take up space ,when like that's kind of just bullshit. So the long answer is probably, yes, but my gut says no, which is probably means it's a yes.
Courn: Yeah. Yeah I'm sensing some discomfort anytime there's an explanation.
Chase: *Laughs* Yeah. Yeah. Yeah there you go. What about you?
Courn: I feel like I've had my own journey with this, because I felt like when I first got into the autism space, I was very cognizant of being like, oh, I don't want to position myself as a disabled person, because I felt like I wasn't disabled enough.
Chase: Oh yeah, for sure. I can resonate!
Courn: Which sounds like a lot of internalized ableism. Like we know disability is a spectrum and it actually does more harm to people that you would consider, oh, they're more disabled, less disabled. You shouldn't be quantifying it like that. But when you consider yourself non-disabled, when you have a disability, it does harm for everyone. Because a lot of like those traits can be applicable to other conditions and things. When people say autism isn't a disability, it's a very short step away from saying pretty much all hidden disabilities, if they're not physical, they're not a disability. And we know that isn't true.
Chase: Yeah.
Courn: So I think it's taken me a while to now that I'm very much like, oh, I'm a disabled person. I actually have more than like autism as a disability. I also have like EDS. I have a lot of chronic pain and fatigue symptoms that would be considered like physical disabilities that impact my life in addition to like whatever you consider hidden, invisible, not apparent disabilities.
Chase: Yeah!
Courn: And they both impact my life in different ways and one of them isn't more disabled than the other. Yeah.
Chase: Right. Yeah. That seems similar to what we talked about where it's like it doesn't have to be either or, it can be and - both things can be true. I think that is what causes maybe some complications to the conversation in general. It's like there's a lot of gray area, I don't know if there are too many hard and fast definitions and rules. I'm gonna default to you in that regard. For certain things, like because you just, you're a little bit more like in the space and like current with that. So-
Courn: Right!
Chase: Like some things can overlap, something, some things for people like they don't take that on and some people do and like how do you tell someone that is or is not enough, but-
Courn: Yeah!
Chase: When you're saying like you don't resonate with at first being like, oh I'm not disabled enough, that's probably where I feel, because I'm just like ADHD is the only disability that I have.
Courn: Yeah!
Chase: But like only also is invalidating.
Courn: Yeah!
Chase: So like there's that. Okay, from now on I'm gonna start saying it. As a disabled person of color.
Courn: Yeah. Well, it also just normalizes the term too. And you can say that about anything. Some people will be like, oh, like I'm not comfortable saying I'm Korean and it's because I'm half Korean. That makes me less Korean.
Chase: And it's the same thing. Yeah.
Courn: Yeah. It's the same thing. And it's just like we know that it's a spectrum for any marginalized identity. And like, I definitely think there's a bit of like education that you can do and a bit of acknowledgement of being like, oh, disability can look different ways. I'm a less marginalized disabled person in some ways.
Chase: Yeah.
Courn: And I have privileges because my disabilities are not visible.
Chase: Right!
Courn: There's hardships that coming with having disabilities that are not visible as well. But they're different, but it doesn't mean you can't use that term. And it creates this like actually really bad snowball effect when you only can like say you're disabled if you're like so visibly disabled, it "others" disabled people, I don't think people realize that disabled people, like most, if not everyone becomes disabled at some point in their life, it's a very common thing to experience. We're disabled at different points in our life. It doesn't mean you're permanently disabled, but it's something we can all relate to and experience. It can look like anything.
Chase: Mhmm. It could, yeah, It doesn't have to look like the traditional and kind of conventional definitions that we think of or like maybe use.
Courn: And I think it's really dangerous because I think when people think, I've heard a lot of this rhetoric that's like, oh, autism and ADHD, they're only social disabilities. They're only disabilities because of the world we live in.
Chase: What, what?
Courn: And like, you can start there and think about certain aspects that are like, oh yeah, the social difficulties part, you know, if we didn't have these standards, like maybe it wouldn't be as awkward. But then as soon as you start looking more into autism and like, in terms of like, neurological issues and developments and delays, it suddenly starts falling apart. Like, there is no world in which I'm going to hear a loud sound and be like, oh, it's fine. Because there's no loud sounds.
Chase: I enjoyed that. Yeah.
Courn: Like, it just doesn't make sense. Like, it's like, I'm not disabled by society. Like I'm disabled in my house. I'm disabled at home. Like I have sensory meltdowns that are things within my control all the time that are not caused by society. Like let's talk about yes, things like work, things like inaccessibility have a major impact on us and make our experience as disabled people worse. But getting rid of all the factors, even if autism was perfectly accepted, ADHD was perfectly accepted in a world ,you had all these accommodations, you're still going to have meltdowns. You're still going to have sensory differences. You're still going to have communication breakdowns.
Chase: Outside of your control.
Courn: Yes.
Chase: Yeah. That's a great point.
Chase: It's very dangerous. And it's also when people don't want that disability status, like disability status protects so many people too. It's a legal protection. So people cannot discriminate against you. It quite literally gets you accommodations that can be life-saving at work and school. So when you fight for autism not being a disability, it literally does not help-
Chase: It doesn't serve the community at all.
Courn: No, it doesn't serve anyone.
Chase: And that's coming from someone who's in it, folks, listen to them, listen to what they got to say!
Courn: Yeah! Fighting literally any like neurodivergent condition is saying, it's not a disability, like it slowly becomes like a very slow step into being like, oh yeah, well then you don't get accommodations, you don't get legal protection. It doesn't help anyone! So...
Chase: Go off!
Courn: I'm like I think the main thing is here is, I want to get across is that disability is a neutral word too. I know people have like very visceral reactions to the word disability. You're disabled from doing something. That's neutral. I am not able to do something.
Chase: It's a fact.
Courn: Yeah, it's not positive, it's not negative.
Chase: It's a statement!
Courn: It doesn't make me less than. And people have been saying for centuries that disability is a neutral word. It's okay if you use it.
Courn: Don't call someone differently abled. Don't say they have special powers.
Chase: Oh, oh!
Courn: Like, handicapped. Like all those words have a lot of pushback. Overwhelmingly the community is like, disabled is perfect if you don't know what to say. As always, ask someone.
Chase: Yeah.
Courn: You shouldn't be looking at someone saying, you're disabled! That's wild.
Chase: *laughs*
Courn: With the amount of people I say like, oh look, you know, there's a handicap spot in passing without like context that that word is, I don't know.
Chase: Handicap is not good.
Courn: No, it's not.
Chase: Yeah.
Courn: It's not a great word.
Chase: That probably leads into the rest of the other bad words that are not great to be used and our thoughts on that because there's some resurgence around words and versions of words being used and I know you've got opinions. I got some but not as much as you.
Courn: Yeah. well I think there's lighter words, like I think the first ones I've seen for years is like neurospicy and a touch of the tism And those have largely been fine for me. I think what's becomes a problem with all these words is that when they start getting popularized by allistic and neurotypical people, then it's just like becomes like a quirky, fun personality trait. And I think it's usually just like the word neurospicy, like I understand it's funny to me. Like when I first heard that, like another autistic person used that, I was like, oh, that's hilarious.
Chase: Yeah.
Courn: Little hot sauce. And like it also just like connects to like Asian-ness. I was like, ooh, love that. Neurospicy.
Chase: Yeah.
Courn: But then you start seeing like neurotypical people using it to describe like completely normal traits.
Chase: Yeah. Spicy has just become an adjective at large for the sister society I'm learning. Like people are just saying like, oh, this is getting kind of spicy or like, yeah, that's spicy, not relating to the temperature of the food.
Courn: Yeah. I think the touch of the tism one is more interesting because I think that kind of like downsizes or downplays it.
Chase: It's a touch, it's just a little bit, it's just a sprinkling.
Courn: Yeah. And it's how people use that phrase. I feel like I'll use it, be like, oh, it looks like they got a touch of the tism, like to other autistic people.
Chase: It's either tism or no tism. Not a touch.
Courn: Yeah. But if it's like a lot of people use it they're just like oh, like they're doing something that's weird, which leads me into the part of, I feel words that are borderline offensive-
Chase: Oh yeah!
Courn: Acoustic. Like that started off very funny to me the acoustic trend, are they acoustic? But then it became is IT acoustic?
Chase: *Gasps* Uh oh!
Courn: And that's what I see commented on my videos. I see comments on other autistic people's videos. The worst version is restarted, which yes is a version of the R word.
Chase: The R slur. Oh my goodness. How cringey, I'm cringing!
Courn: Yes. Which I don't understand that people are like you're trying to make it funny, but are you just using an alternate word to use a slur? Like what is the difference between commenting restarted and the R word on someone's page, because it's not the word? Yeah. Like is it restarted? That is absolutely important.
Chase: Yeah, no, I hate that. I didn't realize that was one that was coming around and it feels very similar to like J Dub's are not allowed to curse but like we would find similar words. I don't know, like same and that's that's common for a lot of kids and the people who around like not allowed to say the F-word, but they'll say like my family would say bucket instead of fuck it like yeah, what? Like we know what you're trying to say-
Courn: Yeah, that's so white! *Laughs*
Chase: But like, truly, truly! And that's a hot take. But like what's the difference, like you may as well just say the thing. You like, what what what purpose and good does it serve to like create like a slightly different version to what you're not allowed to say?
Courn: Correct. And I think the intention matters so much too.
Chase: Yeah.
Courn: Because it's like when other neurodivergent people use these words, they're fine. Like I thought the acoustic thing was really funny when I first saw it because my autocorrect always autocorrects. Autistic to acoustic.
Chase: Yeah. That was good.
Courn: So it was like a funny inside joke. And it was like, oh yeah, this I'm saying acoustic, like that's funny to me. Then as soon as it got like pointing out normal traits, like literally anyone who does something that's weird, like literally I just see scenes of like random strangers, like they're just walking a little weird and people are like, oh are they acoustic? That is literally just like a slur. Like you are not using it to be funny.
Chase: Yeah.
Courn: Like that's just gross.
Chase: Yeah, especially like you said specifically to strangers when you don't know any context and they're just doing something different than what society would view as okay and regular.
Courn: Yeah, and if you're just outside that community, don't use it. I think that goes with any slang.
Chase: Truly!
Courn: You're like, oh, I'm not part of that community. Maybe you shouldn't use that.
Chase: Yeah, but there's conversation around does normalizing those words or starting to say those words help? Does it help it more? Kind of like we talked about like partner, like the word queer, like sometimes these slurs that have been used as slurs but now are like being reclaimed. What's your take?
Courn: I would agree with those words that you gave examples, not as this, because these words are new. And they're often being used in place of saying someone is autistic, someone is ADHD, which would be the proper thing to use. Like it actually creates more stigma. Like people are uncomfortable saying, I'm autistic because that was used as such like a negative. That was a negative adjective, like you're autistic. You're bad.
Chase: Yeah. Versus kind of neurospicy became this like positive spin.
Courn: Yeah! And it creates dissonance where it's like oh, like no one wants to say I'm autistic, I've adhd, I have ocd, you know I have schizophrenia.
Chase: Right, right.
Courn: People want to be like, oh I'm neurospicy!
Chase: Yeah!
Courn: And it's like without the impact!
Chase: Oh for sure! I went to like a little social mixer and like one of the little bingo squares was like, are you neurospicy or find someone's neurospicy, right? Versus like, if the phrasing was specifically like, oh, find someone who's autistic. Like that would have been-
Courn: Find a disabled person!
Chase: Yes. What? Yes, that would have been such a different vibe. So that's a great point. It also reminds me similar to how like at society large, like specifically with genitalia and sex related things, we don't say those words like we create these other words around it rather than just saying like the word.There's always like pee pee and like all these weird like things around it and granted penis is a weird word but like it just yeah-
Courn: It does create a stigma and it doesn't give people the right language-
Chase: Correct, ultimately it's harmful!
Courn: And especially when it comes to disabled people, like you're attributing traits to a different word that people don't quite understand what that means.
Chase: Yeah. Neurospicy is fine. It's not my favorite, but you have t-shirts that sell for that so I can't really tell you too much. I'm kidding, I'm kidding!
Courn: I feel conflicted about it. People love that phrase and they always want that design. It's not something like I super resonate with. I think it's fine to use in the community. I'm not going to call someone else neurospicy.
Chase: And that's so different!
Courn: Yeah, and I think that's the thing. Like I just don't like people outside of the community using these words. So I'm like-
Chase: To other people who also are not in it. Maybe if like you are allistic and you're, someone you know is autistic and like you've got a relationship, sure.
Courn: Yeah, it's just as soon as it gets misused, it kind of ruins it for everyone which sucks because I think neurospicy is a really funny word!
Chase: And it can be really empowering to have those types of words.
Courn: Yeah, Like it shouldn't be an identity aspect. No one should be saying I'm neurospicy in their bio. I find that so wildly weird, but it's like an inside joke. It's like a way to bond with the community. Totally for that. But like if someone asks you, you know, what disability do you have? I'm neurospicy. How does that help anyone? You don't have to disclose your medical information, but like, it's weird to me.
Chase: Also like, neurospicy is really, I feel like, the term only for AuDHD.
Courn: Yes, correct!
Chase: Like it's not including the other neurodivergent umbrella. So that's like the other take, I think, from it.
Courn: Correct. And I could have a whole spiel on that where it's just like, yeah, neurospicy has just become for autistic/ADHD people. The neurodivergent umbrella is so much larger than that.
Chase: But we only use it for AuDhD, I feel like, until we started really talking about it. So even I try not to use like neurodivergent as much and just specifically say AuDHD or ADHD or autism or whichever one. Yeah, and just name it. So.
Courn: Yeah, it's like be specific.
Chase: So you're not gonna go put disabled in your bio?
Courn: I might. You know, that one I might, but I have a whole thing my bio words A's right now. Because I have so many A's.
Chase: A. Get it? Ayee.
Courn: Identities. I think what's interesting to me is I didn't, I wasn't aware of this but I didn't know that there was so much debate over the words like invisible versus hidden versus non apparent disabilities. Like people would largely consider like autism and ADHD to be like hidden disabilities and I think there's like a really you know valid argument for that I mean we have the sunset lanyard imagery that's tied to the word hidden disability they're things that like you can't necessarily see on someone but then there's all this pushback that's just like, oh, the idea of the word hidden is like insisting that people are purposely hiding it.
Chase: They have control and ability to change it.
Courn: Yeah. And I get that. That one's like less. I care about that less than someone with a hidden disability. But I could see that you're like, oh, they're purposely hiding it. I've seen pushback on the word invisible. I like that one less because it's like, oh, it's not invisible. Like it's saying that you could never see it. And it's just like, if you ask them or you looked closely, you could like, is that just bigotry? You don't understand disability.
Chase: *in sing song Karen voice* I don't see disabled people.
Courn: You do. I would hope you see them or else you're not surrounded by disabled people.
Chase: Ooooh, yeah.
Courn: But I've seen a lot of people now using the word like non-apparent and I think it's hard to like latch on to a new term because that one definitely doesn't have as good of a ring. It's like saying hidden or invisible which I think makes it sound like a superpower.
Chase: You want to- you got superpowers? No. I'm not autistic. I have a superpower.
Courn: Yeah.
Chase: You know if you wanted to be Violet from the Incredibles you could just say so.
Courn: Correct. But I always found it interesting that the discourse on language is always evolving. Like you should ask people what they prefer and things. I don't have a strong opinion. I usually say like I do have some hidden disabilities, but can you see me have a meltdown in public? Yes, that's not hidden.
Chase: Yeah. Can you see the stim?
Courn: I also think it's funny because people call them hidden disabilities and then as soon as they're apparent, even though people don't know it's a disability, like they instantly notice. Like trust me, every autistic kid knows that they got bullied growing up because people instantly see you, you know, walking in T-Rex hands, info dumping, like communicating not in the way they want to, instantly just like shunned, instantly made fun of like, oh, they see it. They see it.
Chase: It ain't invisible.
Courn: No, it ain't, but...
Chase: Go off. Yeah, I'll let you go. That was great. Have I ever told you about my mother-in-law's school of disabilities?
Courn: No! Oh no.
Chase: Yeah this is gonna be a hot take! You've never heard about this? Yeah so one, this is a this is a problem, this is not good but-
Courn: This is giving ableist savior!
Chase: Yeah, it's given some savior complex. My wife was homeschooled and at some point their mother would basically like assign them and their brother a disability, obviously yes, to make it was in a way of like you got to know what they go through. So bad y'all. This is so bad.
Courn: We did do that at a camp one time.
Chase: Yeah, we should talk about this and so like yeah like you'd have to go like one of them would just have to walk around like with a blindfold on all day. Like one, I think Jess got like crutches one day. Not a disability. Crutches, come on. That's like an injury.
Courn: I mean it could be. It could be. But also, just like an injury.
Chase: Yeah, like wheelchair. Gotta go around in a wheelchair all day. I figured, yeah. So like that's messed up in and of itself. But when you start looking at the world around you and how hard it would be to like go through the world with a disability, because you can't be like opening doors, ain't always the easiest thing. Stairs, like there's so much more to it than that.
Courn: Correct. Yeah, I don't know how I feel about those exercises. I'm not an expert. I don't know how you develop empathy in children. I do remember having to do that at camp too. Like they made us, I remember breathe through a straw. Like they're like, this is what it's like to have asthma all the time. And I'm like, oh, so I was like shit! Me and my deviated septum, we can't breathe, we're shit. We're like, damn. So I mean, yeah, it was effective. I don't know if that's how you should be doing it.
Chase: *Laughs* Asthma ain't a disability though, right? Isn't that a condition, a disorder?
Courn: I mean...that one, I don't know. I don't know if that's considered a disability or some disorders are disability and some disabilities aren't.
Chase: Right.
Courn: But yeah.
Chase: Those exercises feel sus.
Courn: Yeah, they feel a little performative and weird. I don't know what the solution is. I think obviously you just need to have exposure to other disabled kids when they're young. You don't have to like make it this whole thing where-
Chase: You also don't have to have their same experience. You can just trust that the experience is there and it's not good.
Courn: Yeah, I don't know if plucking a kid in a wheelchair and being like, try it out-
Chase: All day!
Courn: I don't know. Maybe I just don't understand. Yeah, like that feels a little weird. I'm also not in a wheelchair. So maybe I can't comment on that being a weird thing to do!
Chase: For sure! For sure. Yeah, I've also never been impaired to the point where like I cannot use the stairs and things, so I feel like that is not my place to speak. But there's definitely ways like you said, just ask people in the community, just like get their experience learn from it and like yeah, I don't know-
Courn: I mean that's the biggest thing I hear is kids, I mean a lot of that, I mean kids are very curious about things they're going to ask those questions. Why are they in a chair? Why can't, why they look like that? Why are they walking like that? And just being very honest and being like they're disabled that's-
Chase: Yeah!
Courn: That's how they walk.
Chase: That's it!
Courn: That's how they were born like that's just-
Chase: It feels similar to like I feel, like fat people have just said like it's fine to just call me fat, like it's just when you demonize it, like it's just a term, it's a fact, it's a statement like-
Courn: Correct!
Chase: It's when you start using it in the wrong way and so like, I don't know.
Courn: No one wants to use the term disabled. They just want to be like, oh like no you you're differently abled, you have special powers, you have hidden talents. Don't say that. So wildly disrespectful. I know that's just like a borderline concept. I think we're starting to get a little bit past that. And I think as we're opening up the spectrum of disability, it benefits everyone to acknowledge it as such. I honestly, I think it's just so many people don't understand what it means to be disabled. Or I think they just have like one limited view of like being disabled. And I mentioned that with like, people don't think autism is a disability because like they're going off of the social model of disability, that disability is inherently created by society. But there's so many models of disability, ways to look at it. Like prior to that, we initially just like looked at the medical model of being like, oh, you're diagnosed as disabled. Your body disables you in some way, whatever it is, but it's like something that could be medically tracked. And we know that's not really the case for everyone. We know there's tons of like disabilities that weren't diagnosed until more recently. There's ways of saying like, oh, the economic model, like, oh, if you can't work, then you're disabled. And like saying that is the only barrier to disability is very weird. It's also based on capitalism. So like all these models are actually pretty flawed by themselves. But like when we combine them thinking about disability as like a community, that's for some people it is medically disabling, some people it's societally disabling, some people are disabled by their job, they're disabled by other aspects, like there's so many aspects of disability it's a very like complicated ideal, like it's like it's something you resonate with. It's not necessarily something that like on paper like, that's what makes you disabled. Like it is an identity piece and I think that confuses a lot of people. Why you would like choose to be disabled even though you're not choosing to be disabled, you're choosing to resonate with a label that is your experiences. And I think that's hard thing to explain people like why would you choose to use the disabled, you know identity if you didn't have to ,and I'm just like, but I am disabled, you just don't want me to use it because it makes you uncomfortable.
Chase: Yeah, it's a choice to be gay!
Courn: Yeah it's giving similar vibes like-
Chase: I mean are you choosing to accept that title? Yeah, sure. But like, you're not, it just is, it exists.
Courn: Yeah. And like honestly-
Chase: Choosing to label it maybe, I guess.
Courn: I feel like I've just had such a better quality of life since like being very open about my disability and knowing my limits like I just was toughing through things that I couldn't. Like if you were trying your hardest to do something and barely being able to do it, yeah it might be a disability, you know?
Chase: Yeah.
Courn: That's my hot take!
Chase: I love it, I love Courn hot takes!
Courn: You're usually the one who gives the hot takes and episodes and I'm like-
Chase: Oh yeah. You've been on a roll lately.
Courn: And I know we touched on this earlier, but I think it's just really interesting too what we think of as like being a hidden disability. Most of the time like they're not hidden if you're looking for the right signs like from the outside, you're seeing symptoms. And I think in my case, like trying to get a hypermobile EDS like diagnosis, like looking and seeing I had all these symptoms. Like I had fatigue, hypermobility, joint pain, digestion problems, all of my life, things that you would not necessarily consider like a disability, just seeing all those traits. But as soon as it gets attached to a name, then it is suddenly a condition that we understand, and now it's a disability. But it never was really like hidden. None of these traits are actually hidden. Like it is quite obvious that I am in pain when I move around too much, when I can't eat food without spending the night in the bathroom. Like It was never hidden in the first place, you just weren't looking for the right things. So I think that's an interesting aspect of like, oh, is it actually hidden? Or like, do you not know what to look for? Which I think can be a privilege in itself. Like, obviously we don't have all the information, we don't have all the signs. I think it's not fair to assume that everyone's gonna see those traits and be like, you have HEDs, like you're not a doctor. But I do think it starts discourse about like, what is a hidden disability and what is not? What does that title even mean? It's just something that you physically can't see off a first glance? Like what defines it?
Chase: I don't know man, you sometimes got that autism smile. I'm just kidding. Oh my god! I'm just kidding.
Courn: *Laughs hysterically* What?!
Chase: I'm kidding, I'm kidding. That's a tie back to the previous episodes of having to practice smiling. It feels similar to previous episodes where we talked about masking, right? And like people in the past like once you unmask and say these things like, oh but like you weren't always this way, but like no you were. I was, like I was just masking, just hiding it. Like I've always been disabled. You just literally didn't see it because I pretended I wasn't, or you just didn't know the signs and you just weren't looking for it and accepted and acknowledged that those are signs.
Courn: Correct. I think that's so much of it because people don't think you're disabled. So like, oh, but you've been functioning, which we know the idea of whatever that means-
Chase: You've held a job!
Courn: That's not a benchmark of whether you're disabled or not, whether you're autistic, you're not ADHD or not. We create these super elaborate systems to protect ourselves that are really strenuous and hard on our bodies and that is a disability, like a thousand percent. And I think as soon as you start getting rid of these systems you start realizing or even just comparing to someone else like oh like you're going to a restaurant you don't have this 50-step plan you don't have to like do all these things before and that can feel like such a minor example but you suddenly apply that to every situation in life. Like everything is a thousand steps to do anything. Constantly dealing with executive dysfunction. Like that is disability at its core. So...
Chase: Facts, facts. I want to go back to the point when you mentioned hypermobility. EDS? Is that what you called it? EDS?
Courn: Yeah. Ehlers-Danlos Syndrome.
Chase: Say again?
Courn: Ehlers-Danlos Syndrome. It's a collection of different connective tissue disorders.
Chase: Oh, Okay. One, I didn't realize that is a disability?
Courn: Yeah!
Chase: See, yeah, I didn't even know that. I have no clue. I love learning things on this podcast.
Courn: Yeah. It has a very high co-occurrence with autism.
Chase: Okay.
Courn: They don't know why. Might be something genetic. But the main one is the hypermobile EDS. And that's the most common form of EDS. And it's actually the one that you can not genetically test for. So it makes it really hard.
Chase: I was gonna say, what's the criteria to then be diagnosed?
Courn: They have like an actual test like on the hypermobile EDS website. And it has to do with like, like hyper flexibility. So like you move each finger a certain way, you do stuff with your joints, they make you bend down. And if you have like 3 out of 6 or 3 out of 5, it's very likely. And in addition to those, you have symptoms like joint pain, like things like that. For some reason it called, because it's a connective tissue disorder, it actually affects every part of your body. So it's not just joints, it actually affects like how your organs work, how your digestive system works, which is really interesting. So it's kind of like holistically a really bad chronic illness that affects you in different ways. But yeah, you can't genetically test for it, which also makes it really hard to diagnose because like I could not go to a geneticist for it because they said that's out of our wheelhouse. It's not genetically tested.
Chase: Oh, oh.
Courn: My doctor can't diagnose it because they don't have specialty. They gave me a prescription to a rheumatologist and they also couldn't test for it either. And that was the last person I could reach out to, to diagnose it. So there's actually no one apparently within my healthcare system who will diagnose it.
Chase: But. Interesting. I feel like from the fitness and like work like exercise and gym piece that like more and more people are like identifying and realizing they have hypermobility, so when it was when you listed it in the show notes about like being a disability, I was like hold up, what? Like I really want to come on like because I just I had no idea but it does feel like it's being used in just like, oh I'm just like really flexible and it doesn't feel like it's it's the same way I feel like people are like oh I'm just being so ADHD, like it's like almost like an invalidating of people who actually have hypermobility versus like no you're just really flexible and you don't have a lot of strength so thus you like probably don't have control of your joints and you maybe overextend them a lot and get hurt. There's a difference.
Courn: Yeah it's definitely a mix of both. Like I don't think I'm in a position to like critique what is and isn't. I don't know if I have that medical expertise.
Chase: Yeah!
Courn: But I do feel like people definitely like to show the flashy parts of EDS, which is definitely like the flexibility. Just being flexible isn't enough. It's actually like the way your body is flexible.
Chase: Yes.
Courn: Like I'm not a flexible person, but my joints move in very weird ways. I can turn my hands like a full, whatever, 360. Like all my elbows can touch. Like they all like, I don't know what the right word is. They go the backwards way. So like my knees go in backwards. So yeah-
Chase: They go back. Yeah!
Courn: Yeah, yeah. Like, but I'm not like hyperflexible. I can't do splits and stuff like that. But like, I don't know, I would almost dislocate my joints a lot growing up. I've always had chronic joint pain. And like, those are like the more-
Chase: Would you say your joints like give out a lot too?
Courn: Yes.
Chase: Yeah, that would be something, okay.
Courn: Yeah, like I have like, I call it arthritis hands. Like I cannot move my hands after like 5 p.m. at night. Like I just use them too much and my joints aren't working well. And that's kind of what most my body's been. I can't really stand longer than like 20 minutes at a time. And I've always been like that. It's just my joints give out. That's the disability. It's not being flexible. It's then being flexible and then hurting yourself all the time too.
Chase: Yeah. Next time someone comes to me in a consultation and be like, oh, I'm hypermobile, blah, blah, blah. I'm gonna be like, cool, disability gang, let's go. And they're gonna be like, what?
Courn: I'm just like, if you want to do a test online, it's like do it people. A lot of people are, it's the most common form of EDS. I think it's something like 1 to 2 percent of the population which is like just as common as like autism or ADHD.
Chase: And just like we talked about anything else, you want these labels to like help have accommodations and get needs met, sure. Whatever, we're not here to tell you what to do and not to do with your labels.
Courn: No, you can say whatever you want. I feel like the main reason why people want to get diagnoses, and that one's a harder one to diagnose, is because then you can get it covered by insurance to do treatments. I would like to get massage therapy and other therapies covered by insurance.
Chase: But it won't until you have that diagnosis.
Courn: Yes. So...
Chase: Talk about privilege.
Courn: That's the loophole here. Like there's an identity aspect. There's also like you literally need to get diagnosed to get accommodations.
Chase: Yeah.
Courn: So it's good to have disabilities on paper in some way.
Chase: Accommodation so you can work and have a job and participate in capitalism.
Courn: Yeah, that I don't want to do but I'm forced to do.
Chase: We don't dream of capitalism, folks.
Courn: We really don't. I guess some people do.
Chase: A lot of people do.
Courn: I definitely do think there's also some privilege though, in being someone who has like non-apparent disabilities. Cause this is really was my first year. Like, I don't know if this is the right word, but like marketing myself as a disabled person or just like using that terminology on my social media accounts. And I've had like a lot of businesses like reach out and be like, oh, yeah Like we're looking for like a disabled person on this campaign and sometimes it feels like a little bit weird. Like they're like more like mobility impairments and I have some mobility impairments but not to the point where like I'm using an assistive device and I'm like I think you could hire someone who has a mobility disability to work on this. And I think it just opens up a broader conversation because I feel like I get whatever asked to do stuff for like Asian month, to do stuff for queer month. And like, I don't think I'm a bad representation of any of these identities, but I definitely think there's some privilege when like you're the easiest and most successful to grab. It's just like, oh, like you don't have an intellectual disability. Oh, you don't have like a big communication disability. It's easy for me to hire you. We can check off that we hired a disabled person.
Chase: Yup, yup!
Courn: So it's always like a push and pull. Like, I don't think you're taking up disabled space by calling yourself a disabled person. But if you're someone who doesn't have an apparent disability and you're being hired to be the face of disability campaigns, that's red flaggy. And I feel like I'm very hesitant because I feel like I've seen a lot of autistic friends become kind of like the face of disability for months and into July.
Chase: But for lack of a better word, they don't look disabled and like you, I feel like that comes across.
Courn: Yeah, and like there's so many facets of disability that we need to talk about. When you look visibly disabled, people treat you differently.
Chase: Correct. Correct. It's just like the algorithm, we talk about that. The algorithm is getting people who are kind of disabled, but not really, and it's not really an accurate representation. It still can be marketed as non-disabled.
Courn: Yeah. I think the big thing is it doesn't make you less disabled. You deserve to be a face of disability, but you shouldn't be the only face. And I think that goes for literally anything. Like any campaign, if they're hiring a single person to be the face of disability, that person does not exist. But I would hope it maybe belongs to someone in the community who has like a more marginalized background. Like I don't know if you're still celebrating AAPI month and you put my white ass face up there. That's weird to me. That's weird. Like, or it's like, oh, I'm not going to be the face of queer month when I have a male partner and I appear to be in a cis-het relationship. Doesn't mean I'm not queer, but it's just like, I have a privileged aspect in that part.
Chase: A perception, yeah, yeah.
Courn: And there's tons of hidden disabilities that are just as impactful and there needs to be awareness for them but I think we need to stop. I don't know, there's also just all this divisive language that's like it's very much like hidden disabilities versus visible disabilities and like it doesn't have to be that way. Like I wish it didn't have to be like, oh we need to get someone who looks disabled in here.
Chase: Yeah.
Courn: But it's like, you need to have people that show a spectrum of disability. I mean, it's a different world when I feel like visible disabilities have been used literally in Hollywood and media for so long to be the face of horror. Like the fact that every villain has like some type of facial disfiguration is just so wild to me. There's like every horror villain. It's absolutely horrible.
Chase: The villain is always a character with a deficit, according to society.
Courn: Yes, it's like they have scars, like they have a disfigured-
Chase: Missing a leg!
Courn: Yeah, it's just like-
Chase: They created these like tentacle arms because they don't have an arm or something!
Courn: Yeah, like they have whatever skin between their fingers.
Chase: That's a great point!
Courn: We talk about like, I don't know, types of hand deformities. They're used in horror and stuff. Like it's gross! There's a lot of really gross ableism that gets put-
Chase: Hunchback of Notre Dame. Ugghhh.
Courn: That movie always made me uncomfortable.
Chase: But yeah, that's a hot take.
Courn: It's just it's a wild world out here. But I do want to say, you know, for all of those who have non-apparent disabilities, even if other people can't see them, they don't understand themm that doesn't make you any less disabled than another person Your feelings are valid. Your disability is valid and you deserve to have life-altering, life-saving care as much as any other person.
Chase: Absolutely. We need more people in the world saying that too.
Courn: You're valid. You're disabled. It doesn't make you less than, you're just disabled.
Chase: Yeah, and as two disabled people who have a podcast talking about this kind of stuff, we just want to say happy disability pride month to all you disabled people out there,
Courn: *Woops*
Chase: And that's pretty much gonna wrap it up for us! I need to go buy a sunflower landing, I gotta go!
Courn: Bye!
Chase: Bye!
Chase: Hey folks, a quick disclaimer here, Courn and I speak directly from our own experiences and while we try our best to amplify marginalized voices and present accurate information, the thoughts expressed here are definitely not a reflection of all neurodivergent, AAPI, or queer folks. So if you have any suggestions, comments, or thoughts, feel free to email us at hello@neurotakespod.com. Thanks!