Emily: Hi, I’m Emily Ladau.
Kyle: And I’m Kyle Khachadurian.
E: You’re listening to another episode of The Accessible Stall.
K: What are we going to talk about today Emily? As if I don’t always know.
E: I don’t know. Maybe one day I’m going to catch you off-guard.
K: Not today.
E: Not today, and you know why not today? Because today was your idea.
K: That’s right.
E: So, I’m not telling you what we’re going to talk about today. You’re telling me what we’re going to talk about today.
K: These are one of those episodes where I probably should have done the whole intro that way. Anyway, today we’re going to talk about disability. What a surprise. But also — E: Whoa, is that what this is about?
K: Yeah, we’re going to talk about how it’s ok not to like it. Now, if you’re still with us –
E: It’s ok not to like being disabled? K: Yes. Now, if you’re still with us, I – E: What are you talking about?
K: — know we’re only 40 seconds in. I know, right, what a concept. See, I’m losing you. Yeah. No, shocker, right? Sometimes having a disability is like terrible.
E: Actually, you’re not losing me at all. I have a lot of feelings about this.
K: I know, I know. You were being sarcastic for the audience. I get it, I’m – well, I’m staring at you. These people don’t know. But anyway, sometimes being disabled sucks, and it’s fine to think that. But unfortunately, for some reason or another that we’ll probably try to get into in this episode, it’s sort of seen as taboo in our world to admit that to people who aren’t disabled. Indeed, it’s also taboo to appreciate when it’s shown.
E: Well, that’s exactly what I was waiting for you to get at. I think there’s a difference between being honest about how being
disabled is not always the sun, the moon, the stars, and – K: It’s never that.
E: — unicorns. I’m obviously exaggerating here, by a lot. I love hyperbole. Hyperbole is great. But there is a difference between
expressing frustration with being disabled, or with aspects of your disability versus representation of disability as sucking in such a way that it’s intended to pull at you heart strings. I really believe that it is possible to depict disability in the media as not always being sunshine and roses without using it to evoke emotions.
K: I don’t think it’s bad to evoke emotion.
E: But I think it is, because it’s never an emotion of like, “Oh, I empathize.” I don’t ever feel that. It’s more just like they want you to feel bad for the person.
K: Yeah. I don’t agree that that’s the best way to do it, but the reason they keep doing it is because it works.
E: I guess we should –
K: I’m not saying it’s a good thing. I’m just saying that it’s not untrue that it makes sense, because why wouldn’t you do something that works?
E: Boy, this is confusing to talk about. But yeah, I’m following you.
K: No, but I mean – okay, Emily and I saw a commercial that I had no problem with, that she had all the problems with and the only slack that I will give her is the fact that they could have gone without the sad music.
E: Okay, hold on. Back that track up because we need to explain and contextualize, and I am going to argue the hell out of my position. I’m so amped for this, because I love arguing with you.
K: I’m not going to argue anything. I’m just going to disagree with you.
E: I love arguing with you Kyle. But for real, there is an HP commercial going around right now, for the holidays, and we all know that holidays are all about sappy love commercials that make you feel feelings and spend money. This particular commercial portrays two brothers; one is deaf, one is hearing, and the deaf brother is all, “Oh, woe is me because I can’t be like my brother. I can’t play music with him. But my brother is a rock star and I want to be just like him. But instead I’m all lonely, sad and isolated because my disability sucks.” But then his brother does this really cool thing where he uses HP technology to ensure that his brother can be included. So, you have the brother who can’t hear and the brother who can hear playing music together. It’s really cool and I think it’s really an awesome use of technology. But my problem is that they had to set the whole thing up with the woe is me, feel bad for me, my life sucks and the able-bodied savior came in and fixed it for me. I think that it could have been a really cool story about really cool use of technology, inclusion, brotherly love and togetherness without all the sap.
K: I agree with you. But –
E: I was ramping up for an argument and then all you say is, “You agree with me”?
K: Yeah, I do agree with you. But –
E: No, but –
K: One, it wasn’t. Two, I appreciate your point. You’re absolutely right. But that’s sort of what this is about. I don’t think that it’s the worst thing in the world to assume that some people might not like the fact that they’re disabled. Now, I get it. Because of the way that disability is typically, not always, but typically portrayed in the media, that’s it’s usually a sob story, I get it. It’s rout, it’s boring, it’s stupid. Sure, why add to it? But, if you’re going to do it, I think this commercial did a good job.
Having said that, could it have been better? Yes. Having said that, could it have also been the case that the brother really felt bad that he couldn’t play music with his brother? Sure. I’m not deaf, but there have been times when I can’t do something that I’m watching someone else do and it’s like, “Oh, I wish I could do that. That sucks.” It’s the same thing. Like, why is it – I think it’s worse that we can’t admit that that’s sometimes okay.
E: But it’s all about the context, because I’ll be the first to admit how much it sucks when I can’t do something, simple things. Okay, so people running; sometimes I look at them and I’m like, “Huh, I can’t run up and down stairs. Gee, wouldn’t that just make my life easier and more inclusive?” But using something like that to be all, “Oh, woe is me” and then sell a product, is not how I appreciate the use of disability. Nor do I think that’s a really honest look at the experience of disability. Because you know that it’s an advertising tactic, or a media tactic. It’s so different when you’re talking about an authentic experience versus when it’s manufactured to make money.
K: That doesn’t mean that it’s not a genuine experience; it just means that it’s engineered to make you feel certain things in the same way that Coca Cola is engineered to taste good, and in the same way that when Sarah McLachlan comes on your TV you immediately change the channel because you’re not going to donate to those animals anyway.
E: How does genuine and engineered to be something even fit together?
K: Because, yes, one is fake, one is totally not real. It’s manufactured. But, if that manufactured thing can elicit real feelings from you, like a movie, or a book, or an advertisement, that doesn’t make your feelings interpreting that piece of media any less real. It just doesn’t. If you’ve ever cried at a movie, or really enjoyed a book such that you felt like you knew that character, that’s the same thing. The only difference is this is trying to sell you something. I don’t think that it’s any different. I really don’t.
E: But it’s trying to sell you something through a particular stereotypical set of emotions.
K: It’s stereotypical because it’s sometimes true.
E: Sure, yeah. I’m not arguing that. I think that it’s absolutely true that it’s really difficult to feel excluded and that it is really heart-warming and nice when someone extends their metaphorical hand to you, lets you into their world and finds a way to make inclusion work. I love that. I honestly think that there are ways to talk about that emotion that don’t involve exploitation of that emotion. Because I think we’d be lying to ourselves if we’re not talking about it.
K: I don’t think it is necessarily exploitation. I really don’t. I think that it’s taking it a little too far. You have a point here. My problem isn’t with you. My problem is somebody –
E: For once.
K: No, really. My problem is somebody else who sees that commercial and because of that portrayal of disability, in their mind completely negates everything that it does do right, which is everything. The entire wrong part of it is wholly up to interpretation. The stuff that’s objective about it is cool no matter how you slice it. That’s okay. Obviously, you’re entitled to however you want to interpret something; that’s you. Not going to fault you for that.But what I’m saying is if you’re one of those people, I implore you to look beyond that for just one second, because this, in particular, was really good. Yes, like I said, you have a very valid point. It could have been better. Most things could be better; America, for example. I’m just saying I like the commercial. I liked it. It was cool, it didn’t make me feel anything, because I’m disabled too, and none of that works on me. But I’m not going to go out and buy an HP guitar or something, but I liked it. It showed inclusion and I like that. Even if it comes at a cost, I don’t think the bad outweighed the good in this case.
E: They’re completely discounting the fact that disability consists of the largest minority, or comprises the largest minority in the world, and that one out of five people are disabled in the United States. They’re instead marketing to the able-bodied, feel-good, “I can also buy HP and feel like I did a good deed”.
K: Yeah. Or they’re marketing to the four out of the five people who are disabled who won’t find a single problem with their commercial.
E: That hearkens back to what we talked about, about group think. How obviously, not everyone’s going to share this same opinion. I need to remind myself of that. Even when it comes to things like this where I feel like it should be obvious that pity should not be a marketing tool. But alas, we all know that advertising is usually predictable.
K: I don’t think it’s necessarily pity. I really don’t. Okay, I’ll give you that it might make the viewer feel pity. I think that’s wrong, I think they knew that, and I think that was wrong of them to do. But if you watch the commercial, I don’t think the dynamic between the two brothers was pity.
E: You make an excellent point – K: In fact, it wasn’t.
E: There’s such a difference between how something is going to come across to viewers versus how – K: It actually is.
E: — something might be in real life. Yeah. But when it comes to the media, you’re clearly not just doing something because you want it left up to interpretation, for the most part. Especially not advertising.
K: No, absolutely not. You’re right. That is why I cut you a lot of slack. Because you’re right. But I do think that you can’t always blame the creator of something just because it made you feel a way that you didn’t like. That’s the other thing about this, right? At what point does being disabled become you and not everyone else? But that’s a different episode.
E: There’s a lot t think about with that, though.
K: Absolutely. That’s why we could do like seven episodes on it.
E: Yeah, for sure. The other thing, too, is we’ve been using this particular HP commercial as an example, but the larger point is that it is ok to talk about the difficulties, the bad feelings and the negative emotions that come with being disabled. But I think what I’d like is to see that in more of an authentic way. Advertising, by its very nature, is, I would say with very few exceptions, not genuine. It’s just not. It’s always manufactured, it’s scripted, it’s put together to make you feel a certain way and think a certain way about a particular product, or service, or whatever it is you’re selling. But, when that is the most common way that the disability experience is shoved into the public’s faces, then they can’t even begin to develop any kind of nuanced understanding of what it’s like to live with a disability.
K: Well, you’re right, but the reason I’m hesitant to agree with you 100%, which I am, which is why I’m struggling with this, is because even though you’re absolutely right, like we mentioned before, clearly, they get some nuance. Because they could make that commercial wherein the dynamic between the two brothers was completely, not completely genuine, they’re probably not even real brothers, but that was a thing. That was real, that was a situation that we could all relate to as disabled people. Even not being deaf, you, as an only child, could imagine what it was like to have a sibling that would want to include you in something. That’s genuine.
E: Of course. It conjures an image, and that’s exactly what you want. Look, advertising almost always accomplishes something. It makes you feel some kind of way. But, whether it’s advertising or a television show, or a movie, I feel like the only way that most of the public gets their messaging about disability is from the media that’s shoved in front of their faces, which is I think is the exact phrase I sued before. It’s literally shoved in front of their faces. It’s like, “Here, this is how we want you to feel.” “This is how we want you to think.” “This is how we want you to respond.” It’s difficult because I want to talk about the bad things about disability, but I feel like people are programed to jump to extremes. So, if you have some bad things about disability, it must all suck. If there’s some good things about it, you must be an inspirational superhero. You can never just be.
K: We’re as guilty of that as anybody, but yeah – E: What do you mean we’re as guilty of that?
K: As a community, we’re very guilty of that.
E: Oh, sure.
K: We’re not allowed to talk about how disability sucks. You’re just not. It’s just something, it’s an unwritten rule. In fact, none of our rules rewritten, but that’s like the most pressing, well, one of the most pressing things. You’re not allowed to talk to somebody about how disability sucks in a semi-public forum where other people might read it. You can surely do it in private, but if you put out a message that has some negative connotation about disability, there’s invariably going to be somebody who speaks up and says, “Hey, excuse me, person, that’s not my experience. You’re demonizing me and removing my humanity. You’re not speak…” It’s like, “No, I’m not speaking for you.” But by saying that you’re making sure that no one knows that it can suck sometimes, and I think that’s completely disingenuous. As disingenuous, I might say, as an advertisement. Because it paints disability as something that is fine, and yes, for the most part, 99% of the time, it’s fine. But that 1% matters a lot.
E: I think the hard thing is when non-disabled people ramble on about the suckiness of disability. That’s when it’s starts to get me.
K: No, no, no. I completely disagree. I’ve never heard an abled-bodied person ramble on about the suckiness of disability.
E: No, about the suckiness of having someone with a disability being present in their lives.
K: No, because –
E: Every single mommy blogger ever.
K: No, I didn’t say –
E: Except for Ellen Seidman, because she is great. What’s up Ellen?
K: No, I didn’t disagree with you that it didn’t exist. I disagree with you that those are completely valid experiences. I don’t like them. I don’t like them because that’s not me. You don’t like them because that’s not you and you know what your life is like, and you don’t want people to interpret your life as being like that. I get that. But you can’t say that those experiences aren’t as real to them as ours are to us. It’s not something that has to be opposing. We’re the ones doing that.
E: I worry not about the validity of the experiences, but about everyone else’s ability to differentiate. Because I’m just as –
K: That’s up to them, man.
E: Exactly. But it affects my life somehow in someway when you box me into something just because of something else that you read, saw or heard. It happens to me all the time.
K: Sure. But we also, put ourselves in the box in a way by calling ourselves disabled. That is what we, and sure, I’m not saying we shouldn’t do that. But part of the reason why I don’t do that is because that is my way of not being put into a box. I don’t think – I’m not saying that you should or shouldn’t do anything. But show me a label that doesn’t come with some baggage. If you’re not willing to defend that, then don’t say it.
E: Exactly. But then it becomes an almost constant defense. Then –
K: Then why would you do it?
E: Well, so here’s the other thing, too. You can’t win for losing. Because if you talked about how bad it is, then everyone assumes
that disability is just running your life. If you try not to talk about how bad it is in some aspects, then people sort of hold you up on this pedestal and it’s like you could never say the right thing. I remember –
K: I don’t know. Maybe. I’m sorry, go on. I thought you were done.
E: A couple of times I’ve expressed the very difficult and painful parts of my being disabled and also having a mom who is disabled. Every time I try to get raw and real about that, I’ve gotten reactions from family members and other people who were suddenly completely freaked out about my mental health. Like, everything’s is just gone downhill, and I’m like, “No.” Because, I wish I didn’t have to live in only two modes, of either everything is fine, or nothing is fine.
K: Yeah, but I mean –
E: That’s not how it is.
K: Are you sure that it wasn’t because that you normally put on this face?
E: That’s exactly what it is. But the reason that I put on this face is because I feel like I’ve trained myself to –
K: Well that’s you, though.
E: Exactly. No, but that’s the thing. I have a face that I put on for people because I would rather people see me as a strong,
independent woman who can handle her shit, than… can we say that on this show?
K: I’ll bleep it. Or whatever.
E: A strong, independent woman who can handle her shit, now I said it twice.
K: Make my job harder, thanks.
E: Sorry. Rather than someone who just cannot get it together and feels sorry for herself all the time.
K: Absolutely. You’re not, you’re 100% right, and the fact that you have to do that, the fact that you feel like you have to do that, and the fact that you probably, actually do have to do that are all bad things. They are all bad things. Nobody should have to feel societal pressure to be or act a certain way and just be who they are. But the fact of the matter is we don’t live in that world yet. Every day we get a little bit closer to it and then something happens where, maybe we get sent back 50 years in the name of civil rights.
E: By yet, you mean ever.
K: I don’t want to name any names, but someone whose name rhymes with Ronald Dump might be a part of that. But anyway. Why did I say that?
E: You better leave that in.
K: Of course I’m going to leave it in. Why wouldn’t I?
E: What’s up, Ronald? Will you angry tweet is?
K: I think that one of the best ways to combat that is to just be yourself anyway. I understand the need to put on a public face when you’re something that society deems isn’t the greatest. I get that. I’m disabled, too. But I think the best way to –
E: You are?
K: I know, right? It’s weird. But I think that one of the ways that you just sort of have to combat that is to just live your life. There was a post on Reddit that bothered me, as often as I go on Reddit, which is very often. Everyone there thinks that they’re like this vast bastion of progressiveness, and for the most part they are. But they’re that kind of special progressive where it’s like, you, know, except for XYC. Usually, the except for is people with disabilities. I can understand why somebody may assume that having a disability sucks. I get it. With commercials like that, for example. That’s a totally valid feeling for someone who doesn’t know any better to feel, of course. But there was this video on Reddit where it was this 9 year-old kid with cerebral palsy. He was walking to the television. Oh, what a tear jerker. And it was a home movie and it made the news. Everything about what I just said was screwed up on like eight different levels. But it got to the front page of Reddit and the top comment was like, “Oh, the poor kid, he needs help.”
E: Dammit, Reddit.
K: “I’m so happy that he’s doing that.” I was like, “I have CP, it’s not that bad.” The guy that said that actually engaged me, and was like “Really?” Yeah, I had a whole conversation about it with him, and everyone else, well not everyone else, but it was at the top, so –
E: All of Reddit.
K: No, no. But the people in the thread got to see that and I had like 300 up votes, not to brag. But I can tell – E: Totally to brag.
K: No. Well the reason I said that is because I could tell that clearly, my message got across to someone. So, okay, I changed that one guy’s perception of CP. But it’s still not mine. It’s like I don’t like to do that very often because like okay –
E: Not your perception or not your cerebral palsy?
K: Both, both. But I’m more than happy – I think that his interpretation of CP was incorrect. I think he was basing that off stereotypes, which is why I said something. The fact that I changed his mind was a miracle. But like I said –
E: No, not a miracle. There are genuinely people who are willing to listen to someone who actually has the experience of a particular way of living or type of being, or –
K: Something like that. No, but I mean to say that I believe that most people are like that. I think that the reason that a negative
perception of disability exists is for a myriad of reasons, but one of the most, I think, is that we teach kids to stay away from wheelchairs because they might run us over. We portray disability in the media as a terrible thing and we do all these things.
I get it. It is sometimes. But it’s not all the time. But because it’s not all the time and also because it’s portrayed as it is all the time, it makes talking about when it is bad, including in our world. Which is the worst thing ever because if we can’t talk about how bad it is to each other, then how the hell are we supposed to be able to talk about it to anyone else?
E: I think that we do a lot of talking about how bad it is to each other behind closed doors.
K: Yeah, but I think that that does us a tremendous disservice, I really do.
E: Right. And I think in our very, very small way, this podcast is trying to break through that because –
K: Well of course it is.
E: I get so tired of the whole public persona thing. But at the same time then, and this is how deep this goes down the rabbit hole for me, if I post something genuinely cheerful and I’m genuinely happy about it, then I start thinking to myself, “Do people just think that I’m trying to be charming to overcompensate for the fact that my life sucks because I’m disabled?”
K: Yeah, but how much of that do you do to yourself, honestly? Because I think, correct if I’m wrong, but would you not agree with me that you might feel that way because you feel like you have to put on a public face all the time?
E: Yeah, for sure.
K: Such that you can’t be really genuine without somewhere in the back of your head thinking that it doesn’t come across that way.
E: Yeah, it’s not all society. I’m not just going to sit here and blame society.
K: Oh, no, no.
E: Because it’s also me.
K: I was just picking your brain. I just wanted to know where you sort of thought. Because I know I don’t do that. I don’t do that on purpose because I would end up like that, and I don’t like that.
E: Perfect example, being earlier today, I went to buy stuff so that I could do winter decorating in my house, and while I was shopping for all the winter decoration supplies, I was covered in glitter and foam dust, Styrofoam dust, and I was just a big, old, mess of crappy stuff. I bought all these jingle bells and I was all happy. Then I posted something on Facebook about how it made me happy, and then I realized I don’t know if that comes across as being too chipper. Then I realized nobody else is associating my post about glitter with my wheelchair, just me.
K: But I mean, who gives a shit?
E: About my glitter happiness?
K: No, no, no.
E: I give a shit.
K: No, that’s not what I mean. Do you really care? Do you really care about how people might perceive your maybe fake happiness? Does that really get to you? I’m asking sincerely.
E: Yeah, yeah. For real, it does. Because I feel like even I start losing myself in this attempt to differentiate between when I’m being genuine and when I’m just trying to put on the happy, public face.
K: Man, for all the societal pressure having a disability puts on you, you sure don’t help. You add a lot to yourself.
E: Yeah, I know. It’s a vicious cycle. But I’d honestly be interested to hear how many other people do this to themselves too. I
understand I shouldn’t read so deeply into things all the time, but sometimes I can’t help it. Like, I feel sometimes that even genuine joy or happiness, or a little glimmer of cheerfulness, I wonder if I’m digging deep for that because I’m just looking for a way to outweigh all the difficulties that I experience. Really, for all of my activism, my disability is not my favorite thing in the whole world. I wouldn’t get rid of it if I had the option, but that doesn’t mean that I particularly enjoy living in this body every day.
K: Interesting. Them is fighting words, oh boy.
E: But it’s my body to express my discontent with living in. If someone else tries to peg on me that my life must suck, no. Do you get what I’m saying?
K: Of course I do. That’s exactly what I would say to any disability activist who is against a cure. The exact same thing.
E: Right, exactly. Not but, and. As long as someone is saying to you, “I want a cure, but I’m not going to also make you believe in a cure”
K: Hey, Emily.
K: I just thought of this really cool, like roll-off the tongue kind of phrase for this type of thing.
K: You’ve probably never heard of it. You ready?
K: My body, my choice.
E: Head-scratching. That sounds a little familiar, but I just can’t place it. I think you maybe just originated it from out of thin air.
K: Maybe. I’m a genius. That was sarcasm.
E: Yeah. You’re absolutely right. You know what I used to say to my parents when I was little? Well before I knew anything about being prochoice. Or being – K: What’s that?
E: I used to say, “You’re not in my body; you don’t know how I feel.”
K: Oh my God. Oh, God. That’s disgusting. You were cut out for this from the get-go. You came out of the womb like this.
E: Yeah, I kind of did. But for the record, I should have contextualized that better because it wasn’t in regard to advocacy.
K: It doesn’t matter.
E: No, man. It was like if I was feeling sick, and they were like, “No, you’re fine.” Then I was like, “You’re not in my body, you don’t know how I feel.” Honestly, my parents still remind me of that sometimes. Sometimes they use it too. Because it’s real. I cannot tell you how I feel and expect that you’re going to understand it exactly. But I would like you to accept it. But I also don’t want you to project your assumptions about how I feel onto me. Did that make sense?
K: My parents have a similar little activist story. Which I hate, because I hate it. It’s a good story, but it’s sort of –
E: About you?
K: Yeah. I’ve told you that story.
E: Because, heaven forbid, you could ever do anything activism related.
K: No. It’s not doing; it’s being associated with everyone else.
E: Oh, God, the masses.
K: When I was like nine I used to ride bikes and I would look super special on the bike. I got the helmet, which looks special. I got the foot pedals that you have to strap your feet to, which looks special, and I had training wheels. Yeah, I was… you could see me from a mile away, like, “Oh, there’s something wrong. They let him out of the house. Oh, boy. It must be his birthday.”
E: Oh, God. I’m so offended for everyone listening right now. I will take the weight of the offense.
K: It’s ok, I’m allowed to say it; I’m disabled too. Yeah, so I was just doing it, enjoying my life and completely unaware of the hatred of every person that has for other people in the world. I fell, and when you fall off a bike when you’re feet are strapped to the pedals, you go with it. That’s just the rules of gravity. I got back up, these kids came up to me and they were all, “Man, why is your bike like that?” I was like, “I can’t ride in any other way.” They were like, “Okay.” They just rode away. I don’t remember that at all. My parents told me that story, and I’m like, “Really, that happened? I talked to people?”
E: You told me this story before, but listening to it again, it’s still enjoyable.
K: I don’t think I’ve told it on the show, but —
E: No, you haven’t.
K: It was my little moment of activism before activism. But I wish everybody was like that. I wish we were like that. In my life I have found that the most receptive people about something are the people that don’t know anything about it.
E: It’s a matter of being very matter of fact. So, if you want to bring it around to my dating life, because everything relates to Emily’s dating life.
K: It only took 33 minutes this time.
E: And 51 seconds. But I have found, and this is a very reasoned thing, this is not something that I’m dropping wisdom over here, this has been me trying to figure out what’s best. If you don’t beat around the bush, if you are very matter of fact, you get a better response to expressing that you’re disabled. I always call it dropping the disability bomb. I hate to put it that way, but the reality is that a lot of people are not accepting. But I’ve found that being matter of fact about things and not building things up or making it full of emotional peaks and valleys and all of this stuff, directness is better. It just is. This goes back to the whole advertising thing, because I just get so tired of these overwrought clichés. I’m just tired of them because my life is not an overwrought cliché. Or is it? I don’t know.
K: You’re asking the wrong person, because I’m going to say yes. But everyone listening is going to say, “Of course not, you’re Emily. You’re so everything all the time.” No, in all seriousness – E: Oh, I exhaust myself.
K: In all seriousness, it’s not. I always appreciate the criticism of disability in media when it comes to stories being boring and clichéd and usually bad. That’s why I appreciate good representation. Like in Fargo. I love Fargo.
E: I’ve not seen it, so I can’t speak to that.
K: You’re missing out. But to go back to the beginning, I think that all these things put together are part of the reason why we very seldom talk about the negative aspects of disability. And when we do it, it adds to all of this if we do it in a humble forum. Everything we’ve spoken about. We don’t need any more negative representation of how we are. We have enough of it, and I appreciate that. But I think, I really do believe that the way to fix that is, like you said, to be real. Even if that means talking about how it sucks sometimes. That’s not to say that it sucks more than it doesn’t, because it certainly doesn’t. Usually my life is fine. But I don’t like that I can’t talk when it sucks. I can talk to able-bodied people about it sucking more than disabled bodied. Disabled body people, disabled bodied people.
E: Hmm. I think I feel the opposite of you in that regard because when I talk to able-bodied people about it sucking, unless it’s my very close friends, who are highly in tune with my particular view points and know that my being all woe is me does not mean that disability is the highest source of a need for pity, that there is. I find that I commiserate with disabled people more internally.
K: Yeah, but are those disabled people not also your friends, though?
E: No, I know it’s the friendship thing.
K: Yeah, that’s what I’m saying. It’s not that they’re…. okay, you’re probably going to bet more innate understanding from somebody who is able, of course. But I think that that, particularly with a disability like mine, I don’t know, does Larsen’s syndrome have like a spectrum or is it just sort of a whole bunch of things you either have or not?
E: The way that I explain it is that it manifests different in each person.
K: Right, but –
E: We don’t refer to it as a spectrum, but I suppose that would be an accurate word. Because there are some people with Larsen’s who have congenital heart defects and die an early death. Then there are people like me who are pretty much your basic, boring, average human with some muscle and joint differences.
K: Well, I ask because in particular with CP, and I’m sure many, many other disabilities, I don’t like talking to other with CP about how much my CP sucks. Because CP comes in so many different flavors that you can’t. Which is why I particularly find –
E: What flavor is yours?
K: Vanilla. But that’s why I particularly find it easier to talk to able- bodied people about having CP because they have no idea. They’re always –
E: But in what way are you talking to them about it? Are you pretending –”
K: No, it doesn’t matter. In any way.
E: Kind of like clap you on the back and be like, “It’s ok, buddy, old pal.”
K: No, no. Literally, any way. If I talk to somebody with CP, unless they have CP like I do, then anything that I say is up to their
interpretation based on how they see CP. So, I end up with, “Oh, well you’re clearly not disabled enough. You don’t get what it’s really like to have CP.” “No, I do. I just don’t have it like you.”
E: But have able-bodied people never been to you like, “I get it. I broke my left big toe once”?
K: Of course, of course. Every time that’s happened, I’m like, “Yeah, I know you think you do, but no.” Because that’s what you should say when that happens. You have to be that because then the person you’re speaking to will never stop being that way.
E: Yeah, because you get it from both sides kind of, the more that I’m thinking about it. With disability it’s like, how can I out-disability you?
K: You know what? That’s another episode.
E: Yeah, and we should definitely out that aside for another episode. But then, counter to that, or rather not counter, but actually in the same vein, you get able-bodied people who are saying that they understand because of this difficulty in their life.
In that case, I want to tell them that I appreciate their attempt to empathize with me, but no. But I also don’t want that to come across in such a way that I think I’m a special snowflake and that my problems are worse than theirs.
K: Yeah. I think that the reason they do that, when that happens, is, like you said, to sort of elicit empathy. It’s true, they do. But it’s sort of – it’s like, “Yeah, okay.” But that’s really what that entire situation is. It’s, “Yeah, okay, but…” Like I see what you’re doing. I get it. I appreciate you, you tried. I have seen your olive branch. However it is not sturdy enough to lift me.” Really. But you’ve got to be careful because then you come off as the jerk, right? If you say –
E: That’s the other thing. It’s somehow still on me to make other people not feel bad about my disability.
K: I wouldn’t go as far, maybe you would, but I wouldn’t say that.
E: Have you not ever felt that, where someone else is sort of emotional over it and you’re the one who has to be like, “It’s really not that bad”?
K: Yeah, but that’s it. I don’t entertain it after that. It’s like, “Stop crying, it’s not bad.” If you still cry after that it’s like, “Well, clearly you’re a lost cause. I don’t need you anymore.” I don’t know. My mom still cries when she sees somebody with a disability. But she’s my mom, I give her a lot of credit because in her head, even though she know it’s not terrible because I’m a functional adult. I didn’t have to deal with raising me from a baby, where my infancy was terrible and I died several times and had to be shaken back to life and I’ve had several surgeries. I get it. If seeing somebody with CP makes you cry, it’s because you’re remembering that. That’s why it’s ok when she does it.
E: Yeah. I think I must be spoiled because – well, first of all, my mom always feels guilty about having passed on her disability even though I care not at all and hold it against her not at all. But I think I am so spoiled having a mom who also had a disability because there just is none of that emotional nonsense.
K: That’s true.
E: If I’m feeling particularly down on myself about something disability related or if something hurts, and then she tells me that something also hurts. There is no molly cuddling or pitying from her. There’s no –
K: It’s the exact opposite in my house. Because my parents are starting to get old and they’re like, “Man, my joints hurt all the time.” I’m just, “Oh, do they? That’s cute. I’m glad you had several decades of years where you didn’t have to feel that. I’m sure it’s terrible that it’s starting now.”
E: Honestly though, my mom and I are both guilty of doing that to my dad, and we really need to chill on that. We catch ourselves –
K: Oh, no. I will not chill.
E: Here’s the thing though. If anybody else said this, I would absolutely be livid. But I know that we are difficult on my dad, both emotionally and physically, and being with two high-maintenance, disabled women is not easy. Not to mention that he has physical taxed himself because he needs to help us so much.
K: Sure, yeah.
E: When he says his knees hurt because he gets on and off the floor every morning to help my mother get dressed, I ain’t going to hold that against him. Even though his knees started hurting originally because of a skiing injury. Your little bougie injury, whatever. But when I see how hard he works to help us every day, or when he kneels down in the car to strap in my wheelchair, if your knee hurts, yo, you tell me all about how that knee hurts and let me know what I can do to make it better.
If some random disabled person or non-disabled person wants to complain about how much their knee hurts to me, you take your stupid knee, go get a brace, shut up, get out of my life and stop complaining. But if you’re my dad –
K: It’s all relative though. Don’t misunderstand; I make fun of them too. It’s my favorite thing; I take great pleasure out of waiting for the subway and listening to someone – there’s always someone within earshot complaining about how much their feet hurt. A 100% of the time –
E: Then do just want to like, Willy Wonka them and go up there and, or Gene Wilder them and be like, “Uh huh, tell me more about how your knee hurts.” Or your feet hurt.
K: No, it brings me genuine joy. I get a kick out of it every time. Because, of course it does, and that’s a real problem you have. I’m sure, to you, it ruins your day. That’s every day. That’s every single day.
E: Welcome to my life.
K: Yeah, but it’s fine. It’s really no big deal. But it’s cute. It really is. It’s adorable. “Oh, you have your first bout of chronic pain. You’re in for a world of hurt. Oh, man, I’m happy I was here to witness that.” E: But that’s deriving pleasure out of other people’s pain.
K: Yeah, and? It’s funny. It’s funny.
E: I do that with the emotional pain of ex-boyfriends. But not with the physical pain of people.
K: It’s funny, and I’m sure I’ve been the subject of funny to someone.
E: Yeah, probably. Like me. K: Yeah, but I mean –
E: You’re hilarious.
E: I know.
K: Like if somebody stares and says something about how I look funny when I walk, yeah, it’s offensive. But also, I do. So, how angry can I really get?
E: Do you know that’s part of the reason I don’t walk?
K: Why? Because you look ridiculous?
E: When I walk my butt sticks out in the air, my arms stick out like chicken wings, and I do kind of a tree waddle.
K: Right, okay, and you know that looks ridiculous. Alright, that’s actually, you know what? That’s a different episode too.
E: We’re going to have to re-listen to this and write down all the things that are going to be other episodes.
K: I think that’s a really good episode, sort of taking control of yourself and deciding when to use your mobility aid and also where is your “too disabled” line. Because everyone’s got one, and I don’t mean in terms of yourself only. I think that everyone has a different one.
E: Oh, God, that’s so tough.
K: No, I think that could be humorous. I don’t think it needs to be tough. Because I think we can make it fun. E: Because we make everything fun.
K: Including sexual assault. We did that.
E: We did that.
K: Anyway, my final takeaway, I guess, for this is disability is a complex beast. I’m not going to pretend like it’s easy to get it right in advertising because it’s not. It’s not. I can count on one hand the amount of times that I’ve seen something that not only satisfied me, but I could honestly say, “Oh, yeah, that probably won’t annoy someone.” I have a whole bunch where I’m ok with it, but I can appreciate the fact that others wouldn’t be. There’s only very few where I’m like, “Ok, that’s genuinely good.”
E: You want to see an excellent example of a genuinely good incorporation of disability into a commercial?
K: Is it the mall Tasers one?
E: It sure is.
K: I will put that one in the thing.
E: I love that.
K: Yeah. Who doesn’t love a good **** joke, right?
K: Anyway —
E: Oh, my God. Please cover the ears of your little ones. K: So–
E: Oh, I didn’t give my final takeaway.
E: My final takeaway is that my life is nuanced, disability is nuanced and stop trying to use those nuances to sell products because that is not genuine.
K: Or do it. It’s your job man. Or do if you want.
K: Doesn’t mean I have t like it.
E: Don’t. I’m not going to like it. I’m going to angry tweet you.
E: I’m going to angry tweet you and you’re going to ignore me even though I have more followers than you.
K: Wow, that is like –
E: Makers of HP’s newest commercial.
K: No. You do not have more followers than HP.
E: Abbot Mead and Vickers. Yeah, seriously, go look them up at AMV_BBDO. They’re the people responsible for that sappy mess of ugh.
K: I like it.
K: Yes, I do. Why are you going to tell me I don’t like it? Anyway, that was another episode of The Accessible Stall. I am Emily and she is angry. I said I’m Emily. I’m Kyle and she’s angry E: Did you mean to say that?
K: No, I totally screwed up.
E: I understand that we’re basically interchangeable, but – K: At this stage.
E: I’m Emily.
K: I’m the other guy.
E: He’s Kyle. Kyle, say your name.
K: When no one is around.
E: Say, “Baby, I love you if you ain’t running game.”
K: Yeah, if you’re not into Destiny’s Child. Well you cannot be into them, but if you don’t remember that song.
E: I’m sorry, if you don’t like Destiny’s Child, you’re not invited to this party anymore.
K: Yes, they are. Who cares? Anyway, goodnight everybody. Another episode of The Accessible Stall.
E: Party blower.
K: So ridiculous.