Episode 91: When Did You Know?

Emily:                                       Hi, I’m Emily Ladau.

Kyle:                                        I’m Kyle Khachadurian.

Emily:                                       You’re listening to another episode of The Accessible Stall.

Kyle:                                        What are we going to talk about today, Emily?

Emily:                                       I think we agreed upon an episode topic in the past episode, is that right? My short-term memory is legitimately shot.

Kyle:                                         It is, yeah. We sort of stumbled upon it by accident like we often do with our topics and decided that it would be best that its own episode and here is that episode.

Emily:                                       We’re going to talk about when it first came into our consciousness that we are disabled and quite frankly, this is the level of self-awareness that I’m not prepared to grapple with. But at last, here we go.

Kyle:                                         The last time we had this much lack of a self-awareness was the gender episodes, strap in everybody.

Emily:                                       The gender episode was such a good one. Are we allowed to say that?

Kyle:                                         I think so.

Emily:                                       I felt like that was such a solid conversation and I don’t mean that in a sense of patting ourselves on the back, I just mean that as hard as it is for me to be a self-aware person, sometimes it’s nice to pick apart things that have been bubbling under the surface of my brain for a while.

Kyle:                                         Yeah. I agree and that’s why I think that this is going to be really fun to make.

Emily:                                       Can I also, before we get into it, just shout out the fact that we are recording this after the election results have been announced. The sky’s a little bluer around here. How is it in Seattle?

Kyle:                                          Feels good, man. Feels real good.

Emily:                                       Virtual high fives, everyone. Insert high fives sound here. All right, that’s enough procrastinating time for me to dig deep into my psyche and figure out when I first became conscious of disability but you know what? I don’t have an answer to that.

Kyle:                                         I find that interesting because your mother is disabled. Whether you knew it or not, it was always there. But to me that means, to me like logically, to me it follows that you would be more aware of it than someone like me who had to learn it because at least you had a direct influence in your life literally from day one. Even if you didn’t know what it was called or even if you didn’t know why it might have made you feel differently, it was always there or am I wrong, is that…?

Emily:                                       No, you’re right. But the thing is that I don’t think that I was, even conscious of the fact that my mom had a disability, really for a little while when I was younger and in thinking about it, the first time that I can remember, now, that I think about it, being presented with disability was I think the day before kindergarten. I met a classmate of mine and her brother was disabled, although maybe he wasn’t even alive at that time. Maybe he was just a baby, maybe this is all in my head and I’m making this up. To be quite honest with you, I was definitely aware of disability in my young mind well before I have memories of it but there’s video evidence of it.

Kyle:                                         How so?

Emily:                                       There’s this video that we did, I think I was three years old, three or four. My orthopedist worked for a med school or teaching hospital or something. She wanted to talk about Larsen Syndrome with me and my mom as examples for her students. She tried to give a lecture to her students on videotape and my mom tried to say a bunch of intelligent things. Then I insisted on explaining as much of my disability as I could.

Kyle:                                         That’s extremely unrammed. I mean, that’s…

Emily:                                       I have the video and I could show it to you but then I probably have to kill you. It’s really funny.

Kyle:                                         I won’t take that risk. That’s interesting. I don’t remember when I first heard the phrase cerebral palsy. I’m almost sure that it wasn’t my parents who told me that phrase. They, I mean, I know they knew but I don’t know if they were the first people to break the news to me. I think I learned that some point in preschool or maybe even nursery school because I also went to special nursery school.

Emily:                                       This makes me think that there were two separate concepts to learn. One is disability in general and one is your particular diagnosis. I almost feel like I knew my diagnosis before I understood that there was a world out there of disabled people.

Kyle:                                         I think that’s got to be true for me too. I think that will be true for most disabled people, right? Because you learned about yourself and you learn about what your particular disability is called and how it affects you. As you get older, you realize that there’s a big old world out there and there’s other people like me in it.

Emily:                                       Disability to me is a big, broad concept where I understood that I had Larsen syndrome and that meant that I was different.

Kyle:                                         Right, but you didn’t put two and two together. You didn’t say like, you didn’t think that Larsen syndrome equal being disabled.

Emily:                                       I don’t think it was because my mom ever projected there being something wrong with being disabled, but I just don’t know when I first heard that word. I don’t know when I first heard Larsen syndrome either. I just know that it was something I was much more familiar with.

Kyle:                                         It’s weird because I went to Viscardi. I mean, everyone knows that we say it seven times per episode, but there, looking back, it’s obvious but I remember as a kid, wondering why they always hammered into our heads that we shouldn’t say I can’t. But it’s also that it’s not bad to ask for help, just common disability rhetoric that you tell kids, little children. Obviously, that those phrases are too generalized to apply to adults, really. But it was weird to me at the time. Because even though I knew that I was different and I knew that everyone around me was also different and some of them, it was a very obvious physical difference.

It’s not like I assume that everyone was just like me. It’s just that I knew that everyone around me was some kind of different and I was this kind of different.

Emily:                                       That’s an experience I didn’t have right away. I think the first time that I really understood there were lots of different disabilities was summer camp and that started for me when I was seven. I went for a week and I mean I was homesick and miserable the whole time. Don’t remember too much of it, but I do know there were other disabled people there.

Kyle:                                         What? Sticks with me and I don’t remember how old I was but I remember meeting one of my good high school friends. We’re not in touch anymore but in kindergarten, he had cerebral palsy and I don’t remember if I knew that phrase at five years old, I feel like I did because the reason it sticks out to me was because I distinctly remember feeling like, “He can’t possibly have that. That’s what I have and look, he’s so much different than me.” This was a kid who couldn’t speak that well and used a power wheelchair and couldn’t walk and here I was doing all of those things not using a wheelchair.

But it just didn’t compute that we couldn’t possibly have the same diagnosis. I think I have that feeling, I must have known if I resolved that phrase.

Emily:                                       Do you get a jolt of excitement when you see someone with CP who like very clearly probably has it or when you meet someone or when you learn someone has CP?

Kyle:                                         Absolutely, all the time, which is funny because it’s pretty common and not just in disability space. It’s a pretty common diagnosis as far as childhood diagnoses go. But even now, still every time.

Emily:                                       That’s exactly what I was getting at though with it being common because for me, Larsen is so rare that I’ve only met I think two people I’m not– no, maybe like four people I’m not related to who have it, like in real life. I’ve definitely video chatted with more, but I’m talking like IRL meetings. It was to the point where I met someone who actually works for the umbrella organization of one of my jobs. She has Larsen syndrome and I flipped out when I met her. I was like, “You’re like me. You’re me. You look like me. Your thumbs look like mine.” I mean for me, that was, the literal first time I had ever met someone with Larsen in the wild where it wasn’t like a planned meeting.

Kyle:                                         That’s even better.

Emily:                                       No and this just happened a few years ago. It was amazing. I was thrilled, then every once in a while, someone who has it will get in touch with me. I got a message on Instagram from a woman in Brazil, who said that she has it and she clearly does because there are common facial features. Then she was like, “Yeah, I’ve never met anybody like me.” I feel and maybe this is getting off track of disability consciousness, but for me, a big part of it was not being prevented with a whole lot of other examples.

Kyle:                                         When I lived in Washington, I got to stop saying that, when I lived in DC, the friend that I stayed with has similar CP to me and she was in her mid 30s at the time. She was in her early 40s now. But I remember that she told me that she had never met anybody with CP like her until that day.

Emily:                                       That’s right, yeah.

Kyle:                                        I’m like, “How are you 35 and have never met somebody like us?” Meanwhile, I didn’t realize like I was speaking from an immense place—it’s a privilege. I don’t even know, I guess so, an immense place of privilege because I knew a handful of people that have CP exactly like me. Not only that, I still get happy as a pig [00:12:10 inaudible] when I meet one. I can’t imagine what she must have felt.

Emily:                                       It’s a level of visibility, even if the visibility is not visible. I’m talking about it more from the point of being seen, feeling seeing.

Kyle:                                        Yeah. Absolutely.

Emily:                                       It’s something that I don’t take for granted because it rarely happens to me. That has a lot to do with my disability identity. I had to forge it on my own. Even though I had my mom is a role model, our experiences were different. We talked about this in a much earlier episode, I think like pre-ADA and post-ADA. But it’s true, I was coming up in a different world. My process of figuring it out was going to be different.

Kyle:                                        I remember when I was a very young child, which means that my sister was also a very young child. I think I was maybe nine at the oldest, maybe, probably a little bit younger and she was talking to one of her friends on the phone, the landline for you, youngins. She told her friend that I was disabled and I had– that memory is burned into my brain. Because I was so embarrassed that she could tell her that. Not because I was embarrassed, it was just like, “Hey man, that’s personal,” and obviously, she’s six years old. She’s not– who cares? She doesn’t know any better. But that was the first time that I realized that other people will judge you when they hear that word.

That’s when I first learned that. This friend wasn’t even in the room. She was on the phone. I was a child. People sometimes wonder why disability activists do what they do, that’s why. Because I grew up in the ideal environment to be loved and accepted and everything and I was and I still felt that embarrassment. It was unreal and it’s even weirder to bring it up now as an adult and realize all that.

Emily:                                       It’s such a valid point though because I think I also had a lot of times where, if it was explicitly or directly named that I was disabled, it was an embarrassment for me. I mean now it’s like, “Yup, you’re right, I am. Cool,” but took me a really long time to get there. I really tried very hard to disassociate from that. Obviously, a little kid doesn’t realize the politics of identity but it’s funny because I could turn it on and turn it off, even though I could never hide my disability, even though it was always visible, there were times when I did what I could to pretend it wasn’t there. Then there were times when I knew I had to turn it off and turn it on. Does that make sense?

Kyle:                                        Yeah, I definitely also have had experiences like that but now that I’m digging really deep into my early memories. I told you what I just told you as my friends with my sister’s friend. But also, at the exact same point in my life, my dad put custom pedals on my bicycle and put training wheels on it so that I could ride a bike. I looked like a rolling circus. I mean, it was weird looking because it wasn’t just training wheels. It was like physical therapy pedals and I needed them. I didn’t care about any of that. I was just happy to be riding a bike and kids would stare at me.

I didn’t even wonder why. I thought, they thought, I looked cool with my lame handlebar protector and my blue training wheels. But it’s funny because I had such, visceral embarrassment at that word and yet in a very similar point in my life, give or take a year, I also did not care about looking disabled, you know what I mean? It was so weird.

Emily:                                       It was conceptual for me, not visual.

Kyle:                                        Yes, absolutely! It’s exactly right.

Emily:                                       Because I think that there was some kind of shame associated with it and the concept of it and I suppose that was pretty quickly passed on to me by the world. But I also don’t think I spent enough time to be very literal about it, staring at myself in a mirror and watching the ways in which my body was different. I mean, I still catch myself in the mirror sometimes when I’m doing something or on the camera when I’m doing something. You can see like my hands don’t move exactly the same way as a non-disabled person. I’m very conscious of it when I’m watching it back at me.

Kyle:                                        Me too when—oh, forget it, if I sometimes very rarely but sometimes I’ll catch in my periphery my reflection in the glass of a building and I’ll be like, “Ugh, who is that?” It’s so like ew and I don’t like have low self-esteem or no confidence or any of that. I don’t care. But like when I see it, it’s like, “What is that? That’s me?” So weird.

Emily:                                       When you’re presented with it, it’s an interesting feeling but it’s also, it’s funny because I have a very similar bike-related story.

Kyle:                                        Oh really?

Emily:                                       Yeah, I mean not even so much kid related but when I was little, I had this bike called The Step and Go. It was for kids who couldn’t pedal. You just stepped up and down on it and that’s what made it move. It was basically like a stationary stepper except turned into a bike.

Kyle:                                        Wow, I wish I– that would have been something that I probably could have ridden as a kid.

Emily:                                       But it looked like a massive adult-sized contraption compared to the cute little bikes and trikes that all the little kids were riding. But the point is that I actually used to get a lot of comments just from people driving down the street. I would take it out with my physical therapist and then an adult would be obviously, an adult would be driving down the street and they’d open up their window and have a comment about it. To me, I was just like, “Oh, they think my bike is cool.”

Kyle:                                        Exactly! It’s like, how do you—man, I’m just thinking all the way back now. I used to have an in-home occupational therapist come to my house and meet my parents and grandparents and it was just normal. It was just everyone did that clearly. That’s just Miss Carol. She helps me do stuff, like well it’s not, there’s pictures of me and her and we’re just, she met my family. Thinking back on it, it’s still weird because I just thought that that was how every kid, every kid [00:19:41 inaudible] Miss Carol, everyone goes to therapy, everybody. Meanwhile, I learned way too late that in fact nobody goes to physical therapy unless you’re injured or something.

Emily:                                       Yeah, I mean, I’ve had in-home PT since I was a baby. That was the norm for me too. I also had occupational therapy too for quite a while and that was like a normal part of my after school routine. But believe it or not, you think Miss Carol brought up another instance of embarrassment for me because my Miss Carol was my paraprofessional in elementary school and in middle school a little bit and I had finally gotten rid of a pair of by the time I hit high school but she sometimes would help me to and from the bus and oh my God, this woman, I’m not exaggerating. I know sometimes people use hyperbole to explain someone that they hate. This woman haunts my nightmares about once or twice a week. She is jut in every dream I seem to have. She’s just there. I hate her so much.

Kyle:                                        Her name actually is Miss Carol?

Emily:                                       It is Miss Carol.

Kyle:                                        Oh my god, sorry.

Emily:                                       No, it’s Miss Carol, like she is my nightmare fuel. She was this older lady with poufy black hair, too much makeup. She would wear these skintight animal print dresses and high heels and chunky jewelry. She looked like your inappropriate grandma rather than your nice person who helped you out at school. She was so ostentatious and she got so much attention to herself. I’m like, I know she was just another human being but my God, she devoted her life to mortifying me truly. Anyway, wow. I just got on a para rant here. But the point is that I started having paras in kindergarten. That was a huge, huge indicator to me of disability. Why doesn’t everybody else have another human being who was watching them like a hawk all the time?

Kyle:                                        No but you see, I went to a place where everyone– I didn’t need a para because there was always somebody watching everybody like a hawk all the time.

Emily:                                       I got to be honest, that sounds like kind of a beautiful thing.

Kyle:                                        At that age, it was.

Emily:                                       There is nothing more mortifying than having a permanent grandma assigned to your ass.

Kyle:                                        I can’t imagine. But I mean, there was plenty of that in my school also. But the point I’m trying to make is, every part of my life for a vast majority of it, disability was not only accepted but also totally normal. I mean and I don’t mean normal in the sense that we typically use it. I mean normalized. I mean like as typical as the sky is blue. That’s how usual disability was to me. The only non-disabled people that I knew were my parents and maybe occasionally their friends but like their friends are so close to me that they’re basically family.

Okay, it makes sense. No one in my family is disable, of course. they’re not because they all take care of each other and that made sense. Then my sister showed up and I’m like, “You’re not a caretaker, you’re just my sister. Why aren’t you different?” That’s when I started to– that’s I think that’s when I started to realize that something was a little bit off. Like I said like I’m going back and forth on my memories.

Emily:                                       But I also kind of realized that there is a statistically good chance that there are people who work as paraprofessionals or people who have had good experiences with paras who are listening to this and I’m not trying to dump on all of you or dunk on all of you. I just personally had one that was nightmare fuel. I felt like I needed to add that disclaimer because I’m not trying to offend people. But I also am thinking about an event that I did when I was seven years old, my older cousin organized a disability awareness event at her school and invited me and my mom and we went and we talked about disability.

We have this school newspapers article about it where they quoted me as being a little cute seven-year old kid who stole the show. I came up with some one-liner, about how people stare but that’s okay because they just want to understand you better or something. It sounds incredibly profound and adorable coming out of a seven-year old’s mouth.

Kyle:                                        This was really in your blood from day one, wasn’t it?

Emily:                                       Oh, I was born this way, in more ways than one. But thinking back to that event, that was clearly a time where I turned it on.

Kyle:                                        Yeah.

Emily:                                       Give me time where I was like, I’m adorable and look at my walker. I don’t know.

Kyle:                                        Now, that I’m like talking right now, we’re talking about turning it on. By the time I was a teenager, I obviously knew I was disabled and knew what it was called and your hand up and it turned it off like I knew I do all that stuff, right? I remember once, my mom’s car got towed, she was parked in a fire zone for like two seconds. She nudged me, she was like, “Hey, turn it up,” to try to get out of the ticket. It totally worked. This was like a million years ago and I was like, oh my God.

Emily:                                       It’s so funny you say that because I think I’ve definitely gotten off a little easy being pulled over, although interestingly, the only two times I’ve been pulled over were not my fault. But both times, the disability immediately got them to walk away and that really is a privilege story for another episode because–

Kyle:                                        That’s interesting.

Emily:                                       That is not how disability works out for a lot of people especially not people of color. But for me, I was able to turn it up and I know that is a privilege.

Kyle:                                        It worked.

Emily:                                       It did. Say what you will about it. I mean, turning it off and turning it on is something I still do though. I can’t help it.

Kyle:                                        I don’t know if I turn it off and on, I think I just like I don’t know, I don’t ever have to look more disabled than I am in my day to day life.

Emily:                                       That’s not what I mean. I think I’m talking, at this point, not so much about looking as I am about playing the concept of in general. There are times where I like…

Kyle:                                        I mean that neither.

Emily:                                       Like if you’re having a technically an access issue, it’s not really going to make or break you, but it’s still an access issue. Then you play up the disability to point out what an inconvenience it is.

Kyle:                                        Actually, I just did that like two weeks ago.

Emily:                                       Did you?

Kyle:                                        Sorry, yeah. We were getting groceries delivered and the absolute genius of a delivery person delivered it to a different building in the complex to the same unit number. I called the office and I was like, “Hey, can you get the groceries that someone else delivered wrong?” They were like, “No.” I was like, “Well, that sucks because I can barely walk in my girlfriend’s blinds, now can you do it?” He was like, “Yeah,” and the thing was, it wasn’t just– it was like a truckload of groceries. It wasn’t just a one bag either.

Emily:                                       I’m just laughing so much because the amount of times that I have done that.

Kyle:                                        No, I mean, hey, it’s like one of the only perks we got. Come on.

Emily:                                       On a smaller scale, in college, my roommate and I would always try to outdo each other to get in bed first so that we wouldn’t have to be the one to turn off the light. One night, we both got into bed and then realized that the light was on and we were arguing who was going to go get it and I finally looked right at her and I said, “You are so nimble of leg and I am disabled.” She’s like, “Oh man, you’re playing the disabled card again–” not argue with that and then she got up and turned off the light.

Kyle:                                        Here you go. Look, I’m not a fan of pulling the cart, okay? But sometimes you got to, sometimes you just have to and if anyone listening here disagrees with me, I don’t believe you. I think you’ve also done it. Anyway, that’s why being conscious of your disability from the youngest age possible are really good thing because then you could pull the cart as often as you want.

Emily:                                       I mean, clearly I’m like cracking up over here, but this is really real.

Kyle:                                        Yeah.

Emily:                                       Once you develop comfort with your identity, you can turn it down and turn it up and quite honestly, sometimes that’s very problematic. I feel like in all seriousness, I have to sometimes downplay my physical disability because people judge me cognitively, which is based on their own stigma around disability, which is really inappropriate.

Kyle:                                        Yeah.

Emily:                                       There’s that too, right? Sometimes you have to downplay it because people have stigma that’s completely inaccurate and completely unfair and pits one disability against another. Turning that on and off is a skill, unfortunately.

Kyle:                                        It’s funny I said before that I can’t think of a time when I would turn it off but I totally can now that you said that and that is in every job interview I’ve ever had even at disability [00:31:16 inaudible]. You just do it. I know that you can’t because you come with a wheelchair but I can and I feel terrible every time I do it, but I got to tell you, everybody and I hate to say this, but it works and I hate that it works. I really do. I mean, I truly do. I know that we’re all laughing and I want you to know I really don’t like that it works at all. But, boy does it.

Emily:                                       There’s a lot to unpack there.

Kyle:                                        Yeah.

Emily:                                       Again, it goes back to a privilege that we have, that not everybody has and also, I think it’s a combination of our own internalized evilism and other people’s evilism that sometimes makes it feel like it’s a necessity to turn it up or down.

Kyle:                                        Well, I’m just going to tell you, I have no problem and I mean this too, exploiting other people’s evilism for my own benefit, none.

Emily:                                       That’s fair.

Kyle:                                        I mean, you already hate me, like I don’t really care that I’m somehow being unfair to you at some level like I don’t know, I don’t want to sound like a jerk.

Emily:                                       I’m now [00:32:33 crosstalk] a t-shirt like a shirt that says “I’m exploiting you for–” what did you say about it evilism? I don’t mind exploiting you for your evilism.

Kyle:                                        Or because of it. I don’t remember what I said, but yeah.

Emily:                                       Clearly, I’m not very good at coming up with t-shirt ideas. But yeah, I am finally comfortable in my own skin, for the most part. It took a while to get here but it’s funny because in some ways I think I was more comfortable in my own skin when I was a little kid and then all of a sudden, society crashes down on you and gives you a deeper consciousness of why you should hate yourself. Then you hate yourself for a while and you decide that disability is something that you need to distance yourself from at any cost. Then all of a sudden, you swing back in the other direction, depending on the environment that you surround yourself with.

Kyle:                                        You see like I’ve never hated myself because of my disability. I’ve never like that boat sailed right past me and I really sometimes and I don’t mean this how it sounds but I almost feel like I don’t belong in the community sometimes because it seems like that’s almost something that you have to do in order to be fully understood by the people around you. Now, I don’t mean that and I just mean that broadly speaking. I find that most of the disabled people that we know and that are really powerful activists all have a similar story at some point where they don’t like themselves and they slowly realize that they do. I don’t have that and I feel bad about it? I don’t know why I don’t feel like I should have had that. But I do feel like there’s a part of it that, that part of the experience that many disabled people have just skip me. I don’t know.

Emily:                                       That’s a societal issue though in a way if you flip–

Kyle:                                        I know I am.

Emily:                                       But because I mean, it’s like disabled people are expected to turn into these self-loathing, self-hating individuals and it’s almost like a rite of passage. Having that opportunity to completely bypass that should actually be the norm but it’s not.

Kyle:                                        Absolutely. I completely understand that it is a privilege for sure, but there’s just something about it like, I don’t wish I had done it, but…

Emily:                                       No, I actually I’m saying I think that it sucks that you even have to acknowledge that as a privilege.

Kyle:                                        Sure, absolutely.

Emily:                                       To point out that we live in a world where the normal thing is to hate yourself. It is just assumed that you hate yourself because you are disabled.

Kyle:                                        Man, I don’t think that we answered the question we set out to ask at all, but that is the case with The Accessible Stall.

Emily:                                       When did you first become conscious of disability? The answer is I don’t know.

Kyle:                                        When did you first become conscious that your disability and it could lead to—was serious, you know what I mean? CP can be very serious and I don’t remember when exactly it was that I learned that I got real lucky. But I remember feeling pretty bad about that for a minute.

Emily:                                       Wow, you wait until almost 40 minutes into the episode to drop this bomb.

Kyle:                                        That’s how we do it.

Emily:                                       Really, great question. I had a lot of surgeries when I was a baby and I don’t remember any of them. The first surgery that I have, the vaguest recollection of is four years old. I had a cleft palate repair and I think that I was able to sort of avoid feeling that particular fear of the intensity of my disability for a while because I was just too young to remember and then I think there was always this threat of surgery hanging over my head, whether it was fix this or fix this. I remember when I was like seven or eight years old, I was scheduled for surgery and it was right around my birthday and the doctor changed her mind and she canceled it.

That was– I remember that feeling like a birthday gift. Then I guess like I had more surgeries when I was older and obviously I was much more conscious of the dangers, but I don’t remember when I first really started grappling with it in any real way, I mean like there are people with Larsen Syndrome who have heart conditions. I know of someone who had a baby who died because of it. I know it all things considered my case is more “mild,” but there was this threat always that I would become paralyzed and not that paralysis itself is a bad thing but it was just a threat of my body changing suddenly.

Kyle:                                        Is that still a threat?

Emily:                                       No, because I had surgery to correct that issue when I was 17. But the thing is that the surgery could have killed me also. That was when I think I really realized like, “Oh my God, there’s some life or death shit happening here.” Now, the long answer, what’s your answer?

Kyle:                                        No, I don’t have one. I really, I’m glad you said because like I don’t remember how old I was but it was probably too old to ask this question to your mom but it was like I remember asking her like, “Hey, if they could, they, doctors, if doctors could amputate my legs and give me like Oscar Pistorius. He’s actually terrible but like some really cool prosthetic legs. Would I walk correctly?” And she was like, “No, you would not, this isn’t– you should know this,” and she was right. I should have known that at that point. But I didn’t and I remember that feeling too. I was like, “Oh, I can’t get out of this even if I wanted to.”

I didn’t want to at that age, I’m getting a little too old to keep saying that, although I still today, I would still say I don’t want to but I remember that being like, “Oh, wow yeah, that’s like right up there with you’re going to die someday. I’m like oh, [00:39:26 inaudible]” It’s like I did not like that feeling at all, that I remember that really well.

Emily:                                       It’s like you’re in this for life.

Kyle:                                        But it never bothered me of up until that point, it was like I don’t why, I don’t know why it never bothered you up to that point, because I knew it was forever. But just like there’s nothing you can do. I was like, “Oh.”

Emily:                                       [00:39:51 inaudible] that’s also a good part of making peace with your body in a way or leading to that [00:39:56 crosstalk]

Kyle:                                        Absolutely.  [00:39:58 crosstalk] I can joke about it now, but now, it’s a big deal. But I just that feeling at the time was like, “Oof, all right.”

Emily:                      I mean, my mom, is sort of like watching me 30 years in advance or 30 years ahead, right? She is aging and her body is changing and I am watching that happen live in real time. Just as my body is changing as I get older, I’m watching kind of how the effects of my disability coincide with the effects of aging. It’s like I have a constant reminder of that in front of me and my mom always says she’s like, “I feel so bad. I don’t want you to witness all this and see what you have in store,” and I’m like, “I don’t care,” —

Kyle:                                         [00:40:58 crosstalk] go ahead, sorry.

Emily:                                       I just kind of accepted the inevitability, like my body will do what it will do.

Kyle:                                         I was going to say, isn’t that a little beneficial? Because at least now you know what to expect.

Emily:                                       Yeah.

Kyle:                                         I imagine like as unfortunate as it is to see because it’s your mom, like at least you know, “Oh, okay,” as opposed to if it came at you, if you had nobody or if it didn’t happen to your mom and it came at you by surprise.

Emily:                                       Yeah and I mean our disabilities even though they’re the same thing, affect us in different ways anyway. I stopped walking way younger than she did like she still walks sometimes but she’s largely transitioned to using a wheelchair whereas I transitioned to using a wheelchair in third grade. I was just like, “Well, this is my reality,” and everyone around me, oh here’s one. It only took me like most of an hour to get to it. I got my first wheelchair, my first manual wheelchair in third grade. To everyone around me, parents, doctors, whatever, it was like a big deal. It was some kind of like admitting defeat. To me, I just like this is happening.

Kyle:                                         I felt that way about mobility aid when I used to use them. I just thought they were the coolest thing because they helped a lot. I don’t distinctly remember adults around me feeling that way, but I’m certain they must have, not my parents because they were cool. But like anyone around them, they probably felt exactly like that.

Emily:                                       Using a mobility aid is quitting or giving up or giving in.

Kyle:                                         My dad had that for a little tiny bit of time, but I think once he saw how advantageous it was for me to use them, he squashed that real quick. I think once he saw how crutches help me, he was like, “Oh okay I get it,” as much as he could.

Emily:                                      Parents, shout out to you all.

Kyle:                                         Any final takeaways?

Emily:                                       I mean, I wish I had a profound final takeaway, but I think that the only thing I’m certain of is that disability and identity is very fraught and confusing in so many ways. It’s funny, we didn’t even talk about– I know you just asked me for final takeaways but really quick, we didn’t even talk about the fact that there are some parents that literally just don’t tell their kids they’re disabled at any point. I’m not saying like my parents did not sit down and have the talk with me, the talk being “the you’re disabled talk” but nor was it hidden for me. I know in a lot of cases, parents go out of their way to act like it’s not a reality.

I think I was trying to get at for my final take away that I was grateful that I grew up in a house where it wasn’t this big secret. But I also think that’s a reality I needed to acknowledge.

Kyle:                                         Absolutely. I didn’t– I’m sorry I ask too soon I guess because you’re absolutely right. I first met somebody whose parents did that to them, I guess didn’t do that to them very recently at the age of like I mean, not too recent anymore but I was 22. When I was an adult and it was like how could they possibly hide that from you. I was mad for them, and that person at that point had forgiven or maybe was it has accepted what happened. But just hearing that made me upset. I was like, “How? Didn’t you notice?”

The answer is no. Sometimes you don’t and I guess it was because the circumstances of them that they had very mild cerebral palsy so they could just kind of play it off but for some disabilities, you can’t do that and I can’t imagine like, she can’t imagine that. There was a guy. Wait, was it you? Oh, yeah, we were doing, we were talking with some local NPR station just for a thing and the person we were speaking with was telling us about a man who found out he was blind way too late in life at nine years old.

Emily:                                       This all feels familiar to me.

Both:                                        And yes.

Kyle:                                         We never got in touch with the guy but it was like I can’t imagine because I grew up like you. They never sat me down and told me but I always sort of knew. I can’t imagine what I would have felt if it were actively hidden from me. That would have been, well pretty impossible given where I went to school, but other than that…

Emily:                                       I guess I am grateful that I was not coddled in that way.

Kyle:                                         Yes.

Emily:                                       I think, honestly, one of the worst things you can do for your children is hide a part of their identity from them. But anyway, now that I’ve just wrapped up with a value judgment on parenting, really my final takeaway is that I’m still grappling with my disability identity in some ways. All these years later, but I am overall lucky that I had many opportunities to come into my own. I think that’s because even though I don’t have a singular moment where I recognized disability coming into my consciousness, I know that it was never something that was avoided. A lot of that was by necessity. That was just my life. That was my reality, but it was also not openly talked about in a way that made me feel shame for who I was.

Kyle:                                         My final takeaway is listen to everything Emily says.

Emily:                                       I think that’s a little bit much. Sometimes I don’t know what I’m talking about. But yeah, this one felt good. This felt like a good conversation that I wanted to have.

Kyle:                                         Definitely.

Emily:                                       I’m very interested to hear when other people first realized that they were disabled.

Kyle:                                         Yes, send us a message if you want to tell us your story because I would really, really love to hear it personally. I’m sure Emily would too.

Emily:                                       I would and on that note. This has been another episode of The Accessible Stall.

Kyle:                                         I’m Kyle.

Emily:                                       I’m Emily.

Kyle:                                         Might we say you look good today.

Emily:                                       You look so good.

Kyle:                                         That outfit you’re wearing, that old quarantine sleep T-shirt with those stretchy sweat pants, you are nailing it.

Emily:                                       I mean, I’m almost in that outfit.

Kyle:                                         I am in that outfit, yeah.

Emily:                                       We love you all. Thanks for listening.

Kyle:                                         See you next time.

Emily:                                       Bye.