Emily: Hi, I’m Emily Ladau
Kyle: And I’m Kyle Khachadurian
Emily: And you’re listening to another episode of The Accessible Stall
Kyle: What are we gonna talk about today, Emily?
Emily: We’re gonna talk about how I collect disabilities. It’s a new thing I do.
Kyle: What do you mean?
Emily: I have a hobby now. So, first I got a wheelchair, and now I have some hearing aids!
Kyle: What? Why?
Emily: I’m double disabled!
Kyle: You’re DD? The designated driver…I don’t know. Tell us more!
Emily: Double Dean…
Kyle: Like from Ed, Edd and Eddy?
Emily: (chuckles) Anyway, turns out I’m kinda deaf. I know right? So basically I went to the audiologist because I have trouble hearing and I get really tired of saying “What did you say? What? What?” all the time, and I do that a lot.
Kyle: She does do that so much, it is infuriating.
Emily: So instead of asking people to repeat themselves I was like, hey, I’m gonna go get my hearing tested and probably end up with some hearing aids. I was right, because when the audiologist came into the testing booth after she went through the whole hearing test she was like, “Yeah, you have like, profound hearing loss.” And I was just like, “I know.” And she was like, “Wow, you’re in denial! Hahaha!”
Kyle: Denial?
Emily: She was joking
Kyle: What I am is lazy. I’ve known this for years, I just never came!
Emily: Yeah. Well, it was getting worse so it was time to admit to myself that I just uh…I leveled up in the disability world. (laughs)
Kyle: Well
Emily: So now I have two disabilities. Today was only day one with the hearing aids though and they are driving me up…the…wall!
Kyle: Why?
Emily: I don’t like them at all!
Kyle: Why?
Emily: Everything sounds like a rocket launching, or like you’re seven miles away from me but your conversation is right next to my ear.
Kyle: So your hearing aids are acting like those spy things on the 1-800 commercials at four in the morning? Like, “Eavesdrop on your neighbors in a not at all creepy way!”
Emily: Yeah, basically
Kyle: But for real though
Emily: Like, as we were leaving the office um, I was with my parents and my dad had this like jacket of a certain material, I can’t really explain it but his arms were like rustling against it and I just wanted to pummel him because it was so loud. And then we got home and we have this clock that ticks in the living room…
Kyle: Oh, it drives you crazy now too?
Emily: The ticking clock? (laughs)
Kyle: Yeah because that really, that’s the reason I don’t come over anymore is because of that ticking clock, I hate it!
Emily laughs
Kyle: I’m glad you also hate it now.
Emily: Well, I mean I could hear it before but now..
Kyle: Did you throw it out?
Emily: Well, it’s just sitting with the batteries taken out right now but I literally sat down in the living room and was lke, “This is ticking the seconds away to my death and if we don’t take it off the wall right now I’m gonna lose my mind!”
Kyle: That’s the greatest thing you’ve ever said on this show
(Emily chuckles)
Kyle: Bar none. That clock…It is the loudest…taking the loudest ticking clock you’ve ever heard and just multiply it by two. The clock is just, it was designed to be loud.
Emily: You know I was actually going to ask when it would bother you, but I imagine it would be when we’re watching movies, right?
Kyle: It would bother me anytime. Because when we were watching movies it would distract me from the movie. And then when it was time to sleep it would bother me because it would mean everyone would be quiet which would mean the clock had the loudest thing. Like, I don’t know about you but when I hear something annoying I just focus on it cause I can’t not. So it might be not that loud but because I focus so hard on it, it just becomes the only thing that I can hear.
Emily: Well this was happening with literally every noise that was being made while I had the hearing aids in today. I…they’re not on right now because I was just like ready to rip my own ears off. But, I kind of had a realization.
Kyle: What’s that?
Emily: So I think. And I try really hard not to be guilty of this but I know that people who are already disabled tend to have this attitude when new people are brought into the fold if you want to call it that, or become disabled, where they’re like, “What do you mean you think your life isn’t worth living anymore? This is great! Yay!”
Kyle: Yeah. Yeah we do that a lot
Emily: Okay, so granted if we’re talking comparatively here, wheelchairs versus hearing aids for example
Kyle: Apples and oranges
Emily: Super different. But, the thing that actually first got me thinking about it was I was in the audiologist’s office earlier, and I was making a joke about how I’d like blue hearing aids. And she was like, “You mean, you don’t care if people see them?” And I was like, “Do you see what I’m sitting in?” (laughs)
Kyle: Look at me! Are they blue?
Emily: No, unfortunately the don’t even come in blue
Kyle: So why did she even bother asking?
Emily: No, I asked. I asked if they came in fun colors.
Kyle: Oh okay
Emily: Because, you know the same way that you can get fun colored walkers, or crutches, or wheelchairs…
Kyle: Or braces.
Emily: Or braces, yeah you can get super cool braces like leg braces
Kyle: AFOs. You know, I didn’t know they were called AFOs until like fifteen years after I stopped wearing them. That was like a revelation to me.
Emily: Do you at least know what that stands for now?
Kyle: Yes.
Emily: Okay (chuckles)
Kyle: “Ankle Foot Orthotics” if any of you are like me and are like, “I just called them braces my whole life!” Yeah me too!
Emily: Also, uh KAFOs “Knee Ankle Foot Orthotics.” That’s what I used to wear.
Kyle: Oh no, I was too cool for those.
Emily: Here’s the thing, like I have adjusted to plenty of things before you know? Braces, walker, crutches, wheelchair, you name it and I have used it, you know?
Kyle: Mhmm
Emily: So, with the hearing aids I was like, “Whatever man”
Kyle: “Bring it on!” And they did.
Emily: But they are so annoying! And granted, it’s only been one day. So I need to give them a really solid try before I give up on them like, I’m not just gonna give up. But by the end of the day I was just like, (angrily) “I need to take these off!” And I was like, “Grrrrrrr!”
Kyle: Rip em out of your ears and cause damage. Yeah, I mean I can’t imagine what it’s like becoming disabled you know? We like to pretend we can, but really we can’t and this is just a small dose of it, you know?
Emily: Yeah. And I guess the other thing too is I have the, I would call it a luxury of being able to take them off and it’s not like my hearing is going to be affected to the point where I can’t function. Um, but you know once you become paralyzed and you end up in a wheelchair you’re not gonna be like, “This wheelchair is annoying! I wanna take it off.”
Kyle: No, but you will feel that way for awhile I imagine
Emily: Yeah, and so I just think and this to me, I don’t wanna come across as the thing I always criticize which is people who are like, “I broke my leg once so I totally understand what it’s like to be in a wheelchair for your entire life!”
Kyle: No, but you know what this is you learning about yourself. It’s okay to be self-contradictory on this show. I mean, how many things have I said that I’ve changed my mind about cause of our discussions about it? Go ahead!
Emily: No you’re right, like it’s good to have a little self-exploration every once in awhile. And this really struck me because I technically had to come to terms with the fact that I acquired another disability. And I don’t care at all. Literally the only thing that annoys me about it is how annoying the hearing aids actually are. I’m not embarrassed by it, I’m not uncomfortable with it.
Kyle: Yeah. This is all internal factors. Internal as in it only directly affects you.
Emily: Yeah. But, the moment that I had my realization about the whole blue hearing aids not being a thing, like I realized most people wanna hide it. And as it turns out, the audiologist suggested that I should get black because she said it would blend it with the backs of my glasses. And she was right, you can barely see it. Um, it wouldn’t have bothered me if you could. But then, they have a checklist that they need to go over with you before you can take them home. And at the end of the checklist is a listing of support groups for people with hearing loss. And it really struck me that most people probably don’t take it so well.
Kyle: I don’t think that people take acquiring any disability well. I really think that because we’re born this way we..I don’t wanna say we take it for granted because that’s sort of a silly thing to say like, “I take a medical thing for granted!” But, it alleviates us from having to go through… we’re born into acceptance. It might take us awhile to get to self acceptance, that might hit you like a ton of bricks in your teen years. But in terms of immediately dealing with it, you deal with it from the day that you were born. You don’t have a choice.
Emily: I really like the point about self-acceptance that you just made.
Kyle: That’s why I made it
Emily: Great point
Kyle: Thank you
Emily: I had to grapple with self-acceptance for years, but it was never like, “Oh my God, this whole disability thing!” The disability did not come crashing down on me.
Kyle: No, me neither but that’s part of, well I can’t speak for everyone cause I know that is not the case for some people, it might even be for most people. But I am like you. I had self-acceptance issues that nothing to do with CP. But having it from birth made it much easier for me. There was nothing to accept, it was already there. Like, I don’t know. I understand that’s not what everyone goes through but for me it was like not that big a deal.
Emily: I mean technically, so you kind of did the reverse of me. So you used more mobility aids when you were younger…
Kyle: Mhmm
Emily: And then grew out of them, whereas I kind of was more mobile when I was younger and then gradually transitioned to a wheelchair.
Kyle: Well I did that…I was never embarrassed by my walker or crutches. I know you know that. It wasn’t that I was embarrassed by my mobility aids. I was walking objectively worse with them so they were actually not doing me any favors. At all. They were for a time, you know, but what ended up happening was that I got too good at them and I started using them in the wrong way. The way I would use my crutches was that I would skip on them, like I would push my entire bodyweight up on the crutches and swing forward.
Emily: Oh that can’t be good for you
Kyle: It was great for my arms!
Emily: You were probably jacked. Tiny little jacked Kyle.
Kyle: Seriously! I was, but my PTs were mad at me. So I was like, “I just don’t want these anymore just teach me to walk without them because I can!” And then they did.
Emily: Yeah, and so that’s the thing like, I can hear without these hearing aids but I can’t get anywhere without my wheelchair. And also, I was in third grade when I got my first wheelchair so even though I had some feelings about it, I don’t think I had super complex feelings about it.
Kyle: Or at least you… Oh, sorry.
Emily: No, go ahead. What were you gonna say?
Kyle: Well you were saying you didn’t have complex feelings about it, but I was gonna give you a little more credit and say you probably just didn’t know how to articulate them.
Emily: The other thing is I think some of the feelings that I had were projected onto me by medical professionals and my parents
Kyle: Okay
Emily: Because in my mom’s mind you know, I imagine it was hard to watch her baby get a wheelchair, and it might have sort of seemed like I was giving up on walking. So, you know but then like if someone gets hearing aids are you like, “Oh you’re giving up on hearing?” I don’t know. It really is apples and oranges here. But you know it’s not the first time that I’ve had to introduce a new piece of equipment into my life.
Kyle: No, but it’s interesting to see how accepting immediately you are of the disability you were born with versus just dealing with the one that you just acquired, not that you’re not accepting of it, but like you said there’s a whole…you have to adjust your entire world now because everything is loud, you know? And that’s something too that someone can’t see. Unless it’s like so loud that you’re holding your head or something. You know what I mean? So that’s like, it’s like the disability equivalent of walking into a spider web. It’s like only you know it’s there and no one else sees what’s going on.
Emily: Yeah. And, well you can probably tell by my face because as we all know, or at least as Kyle knows “nothing” does not come across on my face.
Kyle: She has a very expressive face,
Emily: So I was just immediately irritated and my mom was like, “So are you gonna be like this all day?” And I was like, “Look I apologize in advance but I just cannot even handle the noise that is assaulting my eardrums right now!” And it’s also interesting because my mom has hearing aids too…she’s had them for about two years now. So, for her, she was like watching me deal with this process and she was just like, “Yeah been there. Been there.” So I know it’s possible to adjust, it’s just right now it’s absolutely the most irritating thing in the whole world. All of that is to say that I’ve completely rethought my perspective on how to respond to people who are grappling with a new disability.
Kyle: And how has it changed? Are you more accepting? Has it hardened you up, are you less accepting? Like, “If I can do it in a day then you can do it in five minutes!”
Emily: No, because there’s no way I could do this in a day. I took them off by dinner time! (chuckles)
Kyle: I was just messing with ya
Emily: I was like, “If I have have to hear people clang their forks on their plates I’m gonna lose it!”
Kyle: Meanwhile, there just like gently tapping them on the side of their plates like regular eating noises. That’s how I felt about braces man. The second I could take them off when I got home, I did. And they were immensely helpful.
Emily: Ah, that’s how I feel about my bra, but like…
Kyle: Well, yeah.
(Emily laughs)
Kyle: That’s a very good analogy though. Seriously. Like that’s a…In a way, they serve similar purposes. Or at least they did.
Emily: They support you!
Kyle: Well, not anymore. But yes, they did
Emily: Well, in your case
Kyle: Well, I don’t know about your life
(Emily laughs)
Kyle: I’m sorry, we got off on a tangent before you could answer the question. How exactly has it changed your perception of how you view other people accepting a disability that they acquired…wheelchair or otherwise?
Emily: I just want to work on being a little more understanding of where people come from. Ones who are newly injured. And then they say, “Oh I want a cure, I want a cure!” Oh course you do! Because you want to return to the body that you had, the abilities that you had.
Kyle: Yeah
Emily: But at the same time you know, I think that I am actually privileged enough so that I am not upset by my hearing aids.
Kyle: Is that a privilege?
Emily: Yeah it is. Because I grew up already learning what it’s like to live in a disabled body. So, whereas for me, hearing loss is frustrating but not the end of the world, I can’t even begin to imagine for someone where that’s the first disability they’ve encountered, how difficult that can be. I imagine that’s why they list support groups on the checklist.
Kyle: Can I ask you a sort of..I don’t wanna say inappropriate, it is inappropriate but like, Okay. So you already use a wheelchair, you already have a disability and you acquired another one, right?
Emily: Yup
Kyle: Now, was there ever this feeling of like when you first got them when you were like, “Hey, like this is it?” Like, “Oh, if you’re deaf than you can still climb stairs. The world is as accessible to you.” Did you have that thought that like…yes, obviously deaf people have a disability of course, but did you have that little thought in the back of your head that’s like, “Yeah, well…you can still get places though.”
Emily: I don’t think I’ve ever really had that thought.
Kyle: Because I know myself, I know I would’ve. I mean, I wouldn’t have liked myself for it but I’m a hundred percent certain I would have had that thought.
Emily: No, no. And also like, it’s interesting to me because the audiologist described it as profound hearing loss but I only struggle in very specific situations. The rest of the time, everything is loud to me so I just have very weird hearing. And this is without hearing aids so um, you know I don’t think I’m going full on deaf anytime soon. I’m just…the struggle is starting here. It hasn’t finished, just starting.
Kyle: Well have you talked to your mom? Cause she’s used hearing aids for awhile. Have you asked her, like has she gone through this?
Emily: We have matching hearing loss, in reverse.
Kyle: So where you can…
Emily: So my left ear is her right ear, and her right ear is my left ear.
Kyle: Ah, I see. Well isn’t that cute!
Emily: So, yeah I look at my mom and I know what to expect. Just kind of watching her so it’s whatever. But no, I never sat there and thought to myself that deaf people have it easier. Because is it nice to be able to walk upstairs? Yeah. But I can hear people and that’s my access that I have. They can walk up stairs and that’s their access that they have. But you know, I can’t even begin to start playing, “Disability Oppression Olympics” hierarchy, whatever
Kyle: Oh no, that wasn’t my intention in asking you that question
Emily: I know what you mean
Kyle: But, I have to…cause I know myself, and I would’ve that thought, absolutely. Like, and that’s coming from someone who can walk up stairs…you know…
Emily: You lucky bastard (chuckles) I’m just kidding!
Kyle: No, but I am though! I am, in comparison to all the physical disabilities. Even CP! You wanna talk about privilege…I got lucky! But that is interesting. You know, you double dip like you have the experience of someone who is “born this way” but you also now have the experience of someone becoming this way.
Emily: Yeah
Kyle: So you could sort of speak a little bit on both fronts. I mean, not really cause this just happened, but someday soon you’ll be able to speak on both fronts.
Emily: Well, so it’s been happening, it’s been happening. I’ve been noticing it happening. It’s been a process um, the decision to go get my hearing tested was kind of that admission to myself that I need to go deal with it.
Kyle: Mhmm
Emily: So even though I’m only on day one with the hearing aids as of the time of the recording, which I am totally not wearing right now, uh cause there’s hella feedback if you try to wear them when you have headphones on. Ugh
Kyle: Oh yeah.
Emily: So yeah, it’s been a process. But I really, really don’t want people to get the wong impression from this and think that I’m suddenly an expert on things that I know nothing about.
Kyle: Did you find it difficult…the way that you make it sound makes it sound like you sort of knew that if you were to go to the audiologist, that you knew you needed to do, that you were probably walk away with something?
Emily: Yes
Kyle: Now, was that a struggle for you?
Emily: No.
Kyle: Did you like put it off? No?
Emily: Actually, I got to admit that I was happy when they said I could get hearing aids because I felt like that would answer the issues that I had been having. I just didn’t realize that they were gonna be so annoying. Because I had this idea in my head that they would amplify the people talking that I can’t hear, and I don’t know what made me think this but I figured they would filter out all the other surrounding noises, and instead it was like, “If that bird chirps one more time, I’m gonna go throw rocks at it!”
Kyle: Honestly, that it was I thought too. So I don’t know where that idea comes from but I imagine it’s not as rare as you think.
Emily: Yeah, so that was a shock
Kyle: Cause I mean they’re hearing aids, they’re not like ear amplifiers! They aid you in hearing what you shouldn’t or can’t hear, right? That’s what I think. (chuckles) But no, apparently they’re ear amplifiers!
Emily: Yeah. Well, my voice sounds like it’s coming through my ear in a microphone
Kyle: Oooh that’s annoying!
Emily: So… but again, I know that there’s gonna be an adjustment period, I know I might need to go back and get them programmed a little bit differently until they’re right for me etc, whatever, whatever. I think that the other thing too is there’s a lot of misconceptions about assistive technology.
Kyle: Yes.
Emily: And as someone who likes to pat herself on the back thinking that I’m so hip to whatever’s going on in the disability community, and so hip that I just said the word “hip” that you know..
Kyle: Are you saying that it’s profound that you learned something that you didn’t previously know because now you have firsthand experience with it?
Emily: No, I don’t think it’s profound I just wish that I had a better idea of what I was getting myself into. Because I remember leaving the office when she was like, “You need hearing aids and I was like, “Yes gonna solve this hearing issue!” And now I’m just like Oh my God I would rather not hear ever again.
Kyle:You know but where’s the fun of that? If you already knew what the outcome was gonna be and how it exactly was gonna affect you, we wouldn’t be sitting here right now.
Emily: Yeah I know
Kyle: It’s a self-reflection, self learning process and all that jazz!
Emily: Yeah no, I’m learning some things about myself. And I really feel like there’s gonna be people who come at me and be like, “Wow you need to get the heck over yourself!”
Kyle: So what?
Emily: But I’m figuring some stuff out about myself right now
Kyle: Yeah. Let her figure stuff out people in this hypothetical situation!
(Emily laughs)
Kyle: You don’t know everything!
Emily: Aw, man. Disability is so weird. It’s so weird.
Kyle: Yeah
Emily: How come we never just sit and talked about how weird it is?
Kyle: We tried once, remember? That was an episode we recorded four times and then we lost them each time and then we swore never to do it again?
Emily: Oh yeah
Kyle: Spoiler alert
Emily: You’d be so surprised at how many things we don’t put out.
Kyle: Yes. We have a whole graveyard (sighs) Of things that you will never hear! Oh well..
Emily: I’ll never hear them cause I’m going deaf
Kyle: Aha! Yes, there it is! Your first self-deprecating new disability joke. You’re well on your way!
Emily: (laughs) After we got my hearing test results, every time my family said something to me I was just like, “What? What? What?”
Kyle: Like actually though or?
Emily: No, just for fun
Kyle: Oh, that is funny!
Emily: I need to use humor to process things
Kyle: Yeah, I agree there
Emily: So, that’s kind of how I’m trying to deal with the situation. But again, I just wish that my dealing with it also meant that it would suddenly, magically start feeling great.
Kyle: Like, “Okay, yes I’ve accepted. What more do you want? Can this sound normal now please?”
Emily: Right? Like…ugh! (sighs)
Kyle:” I shouldn’t prefer having hearing loss, that was the entire point of these things, to make it better, and you just made everything worse!”
Emily: Have you ever wished that you had a disability for a second different than you had? Like when I have an MRI, the noise is so loud that I find myself wishing I was deaf so that I would only feel the vibrations and not hear it
Kyle: Uh, yeah, but it’s only reserved for very specific situations like that. And that’s probably also the example I would have also come up with. Although I haven’t had an MRI but I’m totally afraid of everything to do with them.
Emily: You’ve never had an MRI?
Kyle: Nope
Emily: I think I have for real, Post Traumatic Stress Disorder from it
Kyle: Everything about it sounds awful. Like the noise, the enclosed space, inability to move. Like, just the more I learn about them, the less I ever want one.
Emily: It was so bad, the used to give me anesthesia when I was little just so I would sit still
Kyle: Knocked out?
Emily: But one time they moved me out of the machine while I was under anesthesia so they could reposition me, and I woke up temporarily.
Kyle: Oh dear..
Emily: I was like, “Is it over?” And they were like, “No.” And then they like clicked the anesthesia thing and then I liked conked back out and I just…I have no good things to say about MRIs.
Kyle: But yeah sometimes I wish…And there are other disabilities too that are “cool” ya know? Like Synesthesia? I always wondered what it would be like to have Synesthesia
Emily: Oh, me too!
Kyle: Although I have a friend who swears I have a mild form of it by the way I describe things like colors and sounds sometimes but I don’t think I do. Maybe I’m romanticizing it and maybe that’s ableist of me, but everytime I hear or read or see something about Synesthesia I’m like, “That must be the most interesting thing in the world!” But I guess to someone who has it, that must be their normal, like everything that we deal with.
Emily: I read a children’s book about it, or like a young adult book? It was a novel and I think it was called, A Mango Shaped Space? It was a girl who had Synesthesia and she like, had a cat. And when the cat ran away she lost her Synesthesia. It was like a traumatic event,
Kyle:Oh I see! Huh. Neat.Yeah that’s probably the only time that I wished I had a disability. Conversely, there’s very few times that I wish I kinda didn’t, either like that’s how little it kind of matters to me on a daily basis.
Emily: Oh, yeah! No, that’s a good flipside to point out.
Kyle: Yeah
Emily: I rarely am like, “Oh my gosh I wish that I was not disabled!”
Kyle: Um there are occassions… I always say I would love to skate if I could? I can’t, That’s my one thing. But you know, if I’m not watching someone do that…that’s pretty much it. And even then, it’s like I admire it anyway. So yeah, it’s very hard for me to come up with a situation where I actively wish it weren’t there. I mean obviously on days where I’m like in pain a lot, and my day sucks in general and I’ve got nothing left to complain about? That’s..yeah, sure why not? Put that at the bottom of the list. But I very rarely, like maybe once or twice a year, if that, do I wish I wasn’t this way.
Emily: I guess for me the only time I might wish that is when I encounter something that’s not accessible to me…
Kyle: So like twice a week?
Emily: But then I realize…But the thing is, I have learned not to put that on myself. Because it is really not my fault that I can’t get into a building.
Kyle: And there’s also nothing you can do about not being disabled either
Emily: Yeah there is no magic pill.
Kyle: Yeah well even if like…So on either side like you can’t fix the building and you can’t fix yourself. So there’s no in sense in you know…
Emily: Well I guess that is what it is, maybe a form of just resignation to the situation
Kyle: Well what can you do? I mean, as unfortunate as it is, there are certain things that you just can’t do. Honestly, it’s a bit off topic but that’s something I don’t think the disability community “talks about” much at all. You know we always talk about how much we need to love ourselves…and that’s all good, I’m all for that you know? Self-acceptance and self-love is very important when you have any kind of disability, acquired or born or whatever, but I really feel like sometimes we don’t talk about days when it sucks you know? And I don’t think that’s you know, fault really. I just think that like, for someone new, like someone who acquired their disability, who like you said in the beginning was like, “Oh I wish I could walk again!” And we’re over here like, “No you don’t! C’mon, we’ve got good parking!”
(Emily chuckles)
Kyle: That must be daunting ‘cause I guess to that person it must sound like, what are we doing? Like, clearly we mustn’t think it’s great all the time. But I guess it does come off that way. I don’t know, maybe that’s a different episode. But you know what I’m saying?
Emily: Yeah that is for real a different episode because there is this need to strike a balance where I never want people to think that I’m not okay but I’m also usually not okay at one point or the other.
Kyle: Yeah, “But I’m also never okay…I’m constantly living a lie”
Emily: “Like everything hurts so bad but smile right on through!”
Kyle: Yeah, but that’s just…that’s life right?
Emily: Yeah. This is really not limited to us. And I mean, the other thing is that no one is really the first person in the world to have to adjust to some new circumstance at some point in their life.
Kyle: I mean, people have babies every day, for example, that’s a new circumstance that will drastically affect your life, right?
Emily: And the bodily changes that a woman goes through.
Kyle: Yeah
Emily: I mean there are just so many things that can change in your body that are beyond your control.
Kyle: Yeah it’s not even limited to disability either. Just like we’re slaves to our own bodies
Emily: Yeah. This is getting deep, and now I’m just sitting here thinking how do I do enough yoga and meditation to transcend my own body so I can get out of my head.
Kyle: Well if you can get out of your head you can get up the stairs, that’s what I always say! Cause you know, yoga cures disabilities…all of them, forever
Emily: Have you done yoga?
Kyle: I have. It doesn’t work. Yoga is one of like the five things I can’t do. So for the thing people think cures CP the most, it’s ironic for me because I really can’t do it. Like, I’m physically incapable of doing yoga.
Emily: Well people always have some kind of suggestion. “Have you tried yoga? Have you tried this uh, dietary supplement that’s not FDA approved but I read this message board on the internet that it works so you should probably try it?”
Kyle: I thought you were gonna say, “Dr. Oz said so!”
Emily: Oh, well I mean sometimes I wanna believe what Dr. Oz says
Kyle: Eh, I don’t like him.
Emily: I really don’t like him at all. I used to like him, when he would appear some as an occasional guest on Oprah, back when I thought he was legitimate not hocking a bunch of crap, but…
Kyle: Well he’s still a legitimate cardiologist
Emily: I know but that offends me even more.
Kyle: Why?
Emily: Because he is a Board Certified Cardiologist who is still hocking nonsense
Kyle: Oh, so he should know better. Oh, so I agree with you. I gotcha. Um, what do you think I guess…I don’t know how to even ask this but like, cause you’re so new to acquired disability, but ultimately how has this changed your perception of people who have acquired their disability? Cause I mean, that’s the point of this whole episode. And you said like, it definitely made you more compassionate and want to be better? But is there any way that it already has made you better? And you can say no. I’m not trying to put you on the spot, I’m just genuinely curious.
Emily: No. I don’t want to change my perception because I feel like the only way o go with perception is, “Oh my God no they’re actually so brave for going through this!” I’m just never gonna be like that
Kyle: Yeah. Well no, that would be very out of character
Emily: So, no I don’t think my mind has changed on anything in particular. Um, but I’m also…I’ve always sort of been like the “suck it up buttercup” variety. So, I’m actually the wrong person to talk to! (chuckles)
Kyle: Well no, I’m actually very similar like I don’t think that doing anything like that makes you inherently brave, Anything that alters you like in a way that affects mostly you, or even how people view you? I don’t think that makes you inherently brave at all. I think that’s a word we throw around a little too much quite frankly, especially in this world. But yeah, I guess I’m also someone who isn’t like that.
Emily: I totally agree
Kyle: And I guess that makes me a stick in the mud, but I promise you it’s not just disability you know? I’m glad you feel comfortable in your own skin, I’m glad you’ve accepted yourself, I’m glad, I’m glad, good for you, good for you. That doesn’t make you brave. Sorry!
Emily: And I think people are often called brave for going through various health and medical things, and what other choice do you have?
Kyle: I mean, okay if it was like life or death, and it was like a 50/50 chance and you beat it, ok fine. You’re still not brave really, because you’re right, you don’t have a choice but like you lived, you get the win, okay you’re brave, whatever. It was probably not easy.
Emily: You can face something with bravery
Kyle: Yeah but that doesn’t make you brave! I agree with you, yes. It takes bravery to do things like that even when you don’t have a choice. But we bestow bravery as an inherent trait of a person like, this something became brave because they dealt with something that they had to deal with. I don’t subscribe to that.
Emily: Yeah, I had a spinal surgery back in high school and I was in a halo for four and a half months recovering, and if you haven’t seen what a halo looks like, seriously Google “halo cervical brace” or just watch Mean Girls whatever you prefer.
Kyle: Cervical brace? Clavicle brace?
Emily: It’s like a halo, cervical neck brace thing?
Kyle: You said cervical
Emily: Cervical. Cer-vi-cal.
Kyle: Oh, like your spine!
Emily: Spine. Cervical spine
Kyle: Oh I’m sorry (laughs)
Emily: It was stabilizing my cervical spine. Okay. Oh-kay I see the confusion, “surgical,” “cervical” Got it.
Kyle: I got it.
Emily: And so many people were like, “Oh my God you’re so brave for dealing with this. And I just kept wanting to tell people, “No, I’m not. The surgery had to happen”
Kyle: “I’m just dealing with it! I had to do this or I might have died!” Like what is that? That’s not bravery..
Emily: I had no choice. No choice. Like, God (sighs) Yeah, actually that’s probably the underlying to all of this is that people are always called so brave for being thrown into a situation that they had no control over.
Kyle: Or even learning to accept yourself! Whatever that may be, that doesn’t make you brave. I’m sorry, it doesn’t! I’m really sorry.
Emily: I just think “bravery” and “being brave,” I know I said this before, but I really want to make that distinction
Kyle: No, they’re different, they’re completely different. Caitlyn Jenner’s not brave. Sorry, uh-uh she’s not.
Emily: Nah, but like someone who runs into a burning building to save children…
Kyle: They’re brave!
Emily: They’re brave!
Kyle: They’re absolutely brave
Emily: Because they were not in that situation and then they put themselves in that situation
Kyle: They probably didn’t even like consciously do it too. They were probably like, “There’s a problem, I have to go fix it…cause I just do!”
Emily: Even if you do it consciously. Like, if you’re making a decision, like if you had the actual power to make a decision, that’s being brave.
Kyle: If you can overcome your brain saying, “Don’t do this thing because it might kill you for the benefit of someone else, then you’re brave.
Emily: But if it’s just happening to you, then it’s how you handle it that makes you a brave person I suppose.
Kyle: Oh it’s just so…I’m glad we’re in agreement about this, I really am. I don’t know why I had any doubts.
Emily: We’re in agreement about all the important things, let’s be real
Kyle: No, no but really because that it such a hard concept to grasp in our world too. Like, “Oh he’s such a hero, he took his first steps” Like, no he’s a kid with CP, he took his first steps. Like, are you serious?
Emily: For real
Kyle: He’s doing what kids learn to do when they’re young
Emily: I hate that this is just coming to me so late into this episode, but I have to laugh because when I was having the hearing aids put on me, all I could think about, and I was cracking myself up was those videos where the kid has their cochlear implant turned on for the first time.
Kyle: Yeah?
Emily: And then everyone in the room starts crying because he heard a voice for the first time
Kyle: Aw that’s pretty cool.
Emily: I feel like it perpetuates, “Hearing: Good. Not Hearing: Bad.”
Kyle: No, I disagree. I disagree. First of all, like, no. Nuh-uh
Emily: I think so.
Kyle: So does a hearing aid
Emily: But a hearing aid is like, I don’t feel I should get emotional over assistive technology, but then I also (unintelligible)
Kyle: No but there’s a difference between making hearing better and making hearing possible. It’s the same kind of emotion you get when a baby who needs glasses gets glasses and sees their parents for the first time and smiles? That’s the exact same thing! You get a Like no one gets angry at
Emily: (unintelligible) I just love babies.
Kyle: Even if it’s an adult, imagine hearing your spouse tell you they love you for the first time? That’s emotional! I don’t care what you feel about cochlear implants or deafness or whatever.
Emily: But I also wonder though because here I am thinking that hearing aids were gonna be super awesome and it wasn’t an awesome first experience for me. I wonder if cochlear implants are super hyped up and then it’s not actually all that great.
Kyle: From what I understand it’s a big source of contention between the “Capital D” Deaf and the “Lowercase D” deaf community because you know, there are different ones. They’re very insular.
Emily: I’m not gonna start you know, saying stuff about stuff I don’t know anything about, I’m gonna stay in my lane here.
Kyle: Yeah no, me too. But I don’t think, you know…I disagree with the fact that hearing is good and not hearing is bad because the reason…I hear you, I do. But you can apply that logic to anything
Emily: You hear me?
Kyle: Oh God! Oh Christ!
Emily: You walked so far into that
Kyle: We should do a whole episode on linguistic metaphors that just get ruined when you have a disability.
Emily: Ooooh!
Kyle: Cause English is full of them. But my point is, you can apply that logic to any assistive technology
Emily: For sure
Kyle: And your point still stands. But I don’t think that’s exclusive to things…you wouldn’t say that a white cane makes…perpetuates the idea that seeing is bad.
Emily: No, because they’re…it’s different concepts.
Kyle: Okay but you wouldn’t say that a wheelchair perpetuates that not walking is bad. People see a wheelchair and think that not walking is bad, but that’s not the wheelchair’s fault. That’s the people’s perception of the wheelchair. And that might be the underlying issue. I don’t think a cochlear implant by itself does that, but I think that to some degree there might be a person who would say, “Of course they would get a cochlear implant. Who wouldn’t wanna hear? I would! Who doesn’t wanna hear?” Tons of people, that’s the answer. Tons of people.
Emily: That’s why you say things like, “deaf gain” and
Kyle: What’s that?
Emily: “Deaf gain” It’s that being deaf being allows you to gain certain qualities in life and privilege in life and particular values.
Kyle: I don’t know the first thing about that. That’s interesting
Emily: Yeah, I don’t profess to know a lot about it but I am fascinated by deaf culture.
Kyle: Well, now you can get your toes wet sort of.
Emily: Oh, I’m not gonna sit here and pretend that I’m deaf
Kyle: No. I know. I know. Anyway, final takeaways?
Emily: My final takeaway is I need to figure a lot about myself out.
Kyle: And my final takeaway is that is has been amazing and insightful to ask you all of these questions about something you just acquired, for the past forty-five minutes.
Emily: This is some breaking news right here.
Kyle: Well I mean like, it’s interesting. We always tell people how we think they should change their perception of disability through this show, and we almost don’t reflect on ourselves episode by episode. But the whole purpose of the episode was to look at yourself and go, “This is new to me, even though I thought I was prepared for this.” So, I don’t know for me it was cool
Emily: I am glad
Kyle: And with that, this has been another episode of The Accessible Stall
Emily: You know that while we were doing final takeaways I was solving The New York Times crossword mini puzzle?
Kyle: I have not done that yet today
Emily: Go, go, go! It was pretty easy
Kyle: Goodnight everybody
Emily: It’s only a Monday, so you know. On that note, bye! Thanks for listening!
Kyle: Bye