Emily: Hi, I’m Emily Ladau
Kyle: And I’m Kyle Khachadurian
Emily: And this is the first episode of The Accessible Stall podcast, and we are making this podcast because I have a physical disability called Larsen syndrome
Kyle: And I have a physical and neurological disability called cerebral palsy commonly known as CP
Emily: And we want to talk about our disability experiences and how the world around us perceives disability. So are we going to talk about today, Kyle?
Kyle: We’re going to talk about picking and choosing your battles when dealing with disability. Because, if there’s one thing our community loves to do it’s fight about everything. and we love to do that, would we believe some fights are better than others, or certainly ones that are more worth having. and we’re going to discuss what we think the criteria for those are. Do you think you should start?
Emily: Oh, were laying it out in terms of criteria? Okay.
Kyle: Or at least… where were similar, where we’re different, so you guys can get to know what kind of people we are.
Emily: We’re very different people
Kyle: As if we’re not always showing us to our friends who totally know exactly who we are.
Emily: The whole world’s gonna listen to this!
Emily: so we should probably contextualize it and talk about a specific incident that’s come up a lot lately on social media surrounding activists and I want to say anger but I’m not sure that’s quite what I’m getting at… activists and their frustration towards the way the non-disabled people perceive the arguments that they’re making.
Kyle: Okay. Do you have a specific example in mind? Or are you speaking broadly?
Emily: No, I think this specific example that I want to talk about is the whole orange peel situation
Kyle: Oh… yes that was a favorite of mine.
Emily: so, for those of you who don’t know, Whole Foods decided to sell oranges that were pre- peeled and put them in plastic packaging and this is pretty wasteful so somebody saw this on the whole food shelf and tweeted “gee, if only oranges didn’t come in their own natural packaging” and then the tweet went completely viral…
Kyle: Because it was funny.
Emily: And Whole Foods pulled the product from store their shelves and Disability activists that by pre peeling an orange it fulfills an access need for people coming because some people may have physical limitations that preclude them from the ability to peel an orange. And I know that feeling and orange is pretty difficult, even for me and I don’t have dexterity issues as part of my disability, and I definitely agree that it is something that would provide more access if fruit was pre cut and pre peeled and things like that, but at the same time the more I thought about it the more I realized that sometimes when it comes to being an activist it makes a little bit more sense to pick your battles. Especially when it comes to such minor issues compared to the bigger issues that are going on right now.
Kyle: Yeah, one of the things I realized in that–to be quite frank I appreciate the fact that I didn’t know that before this was a thing if there were a contingency of disabled people–or people with disabilities whatever you prefer come over going to alternate between those on the show so get used to it–that would have those access issues when it comes to things like peeling fruit, and of course if you think about it it’s obvious that such a thing could be true but how often would you think about it? And the Whole Foods’ credit, if they hadn’t done that, that thought would have probably never crossed my mind because like Emily I don’t have dexterity issues when it comes to things like peeling oranges, however peeling oranges is difficult for pretty much anyone. But I do think that it’s important to choose your battles, and if this is a battle that you choose to fight that you know when to stop. if you’re the kind of person who likes pre-cut food then perhaps this was a bit saddening for you to hear that Whole Food pulled it from the shelves, but you probably eat an orange before this happened and you probably found a way to do it and you probably will find a way to do it again. All while paying less money for your oranges.
Emily: That’s actually an interesting point, what you said at the end about the whole money thing. Because it’s one thing to have convenience that is in turn a form of accessibility for people, but it’s also removing accessibility in some ways by making it more expensive because oranges are one of the less expensive things at the grocery store and you can get a lot of the nutrition you need from an orange but if you’re paying more for the privilege of consuming that orange then as much as it may be accessible because it’s pre peeled, isn’t it sort of also inaccessible in that you’re raising the price?
Kyle: Yeah, everyone with the disability knows–everyone who knows someone with a disability–knows that accessibility comes at a very real price and that’s not a metaphor, it’s
expensive. Accessibility is expensive. Because accessibility is expensive, people with disabilities who really need it try to do things in an accessible way in matters which may not conventionally be seen as accessible. I read an article a couple months ago about a person with cerebral palsy who didn’t know how to make a sandwich because she had limited dexterity in her hands so she decided to use a spoon to do things like place meat on the sandwich or spread condiments or something. A spoon is not built as an accessibility device, but this person used her–she MacGyvered a system where in a spoon was built for her to be an accessibility device, and I think the same can be said for oranges or anything else. Because accessibility has such a high price on it comma people with disabilities are almost born with this innate creativity to find ways to make things that aren’t accessible accessible in ways that aren’t well thought-out or well- known.
Emily: But at the same time I, understand where people were coming from, sometimes it is hard to MacGyver something. My dad’s name is Marc, and we sometimes call him “MarcGyver” because he doesn’t have a disability but he’ll help make things more accessible for my mother and I, my mother also has a disability. And, in doing that, we find ways to make accessibility less expensive and therefore more accessible. But at the same time, it all goes back to “should I be angry because I’m having some trouble peeling a piece of fruit? And I take it as a personal affront that Whole Foods has remove something that provided access for me?” Or should I instead be advocating for improved accessibility as a whole rather than zoning in on this one particular issue. I think that the crux of what we’re getting at is that accessibility is a very real issue but disabled people often take one particular thing and really zone in on it and make that this big issue when there are in fact really big issues but sometimes we feel like we may be able to tackle the smaller ones so we take those on instead.
Kyle: And in fact, I don’t think that anyone who is angry at this knew about pre peeled oranges before this tweet. It would shock me. It would shock me further if one of them bought these pre peeled oranges for accessibility before this whole thing happened. so it creates almost this non- existent issue from an accessibility standpoint. Yes, pre peeled fruit is more accessible. And yeah, somebody pointed out and I don’t remember who but it doesn’t matter that a lot of fruit comes pre peeled and pre-washed like strawberries was a common example.
Emily: Well, you don’t peel a strawberry.
Kyle: no, but they come in a packaging that’s easy open. In the same type of easy open packaging that that orange came in.
Emily: Yeah, pretty much all berries.
Kyle: And whether or not the food should be packaged to be accessible is one thing, but I think to Emily’s point instead of saying “wow, Whole Foods is terrible for taking away these oranges comedies could have been used for accessibility purposes” that we as a people should focus more on the issue of accessibility, period because as important as Vitamin C is, it’s not nearly as important as perhaps getting into the Whole Foods.
Emily: That’s a good point.
Kyle: Or getting into your house to eat the orange.
Emily: I think it becomes a matter of, and it’s not a perfect analogy, but you don’t want to be the boy who cried wolf in a lot of ways. Because I know that there are plenty of barriers to my personal accessibility since I use a wheelchair and those really get my knickers in a knot if you will but, at the same time I’ve stopped picking out every little thing to make an issue out of it and I’ve instead started focusing on the really big issues so if I experience somebody saying really horrible discriminatory comment to me, or if there’s a public building that I should have access to that I don’t have access to, then I’m more likely to focus on that then I am to take on a much smaller issue at this point because I find that you really have to hit home with the bigger issues to get people to listen. So I guess I take a top-down approach rather than a bottom-up approach to my activism if that makes sense.
Kyle: Yeah, I mean I think activism in general and particularly disability activism is something that top down really works well with period usually anyone who knows me will hear me say that I’m more of a bottom up kind of person, where you have to sort of solve the problem from the inside out. But things with accessibility, especially in a world that isn’t build for people with disabilities because most people aren’t, you sort of have to take the top down approach and you have to say to yourself “okay, here’s the thing it’s not accessible, what can I do to access it? And if there’s nothing I can do, what can I do to make this possible?” And sure, oranges are a good step I suppose, but I guess the crux of it is, why stop and oranges? Or why I even start at oranges when there are much bigger things like “here’s a bank that’s down the street from my house with a giant step that I can’t get in, and instead I have to take a bus to the one that’s 5 miles away because it has an entrance that’s accessible to me? Why can’t I just go to the one right there?” That’s a much bigger issue in my mind, and it’s the same kind of issue. It’s the exact same thing.
Emily: Different scale.
Kyle: Right. And I think if we’re going to zone in on an issue, that I think we should pick something on a large scale. Sure, one tweet took those oranges away, and one tweet could potentially bring them back.
Emily: But one tweet could make a building accessible too, arguably, we hope. Would be nice.
Kyle: It would be, but I think that’s a much harder thing to do. And that’s not a bad thing, but I think in terms of payoff that it’s worth the extra effort to maybe try to get a ramp installed in front of your bank for instance then it is to argue with Whole Foods whether or not they should stock fruit that’s pre peeled.
Emily: And also, and this is jumping ideas a little bit from what we’re talking about but it’s still relevant to the idea of the fruit and accessibility. I really like the applesauce and the yogurts that are in the squeeze pouches, because they’re easier for me to eat a lot of the time. But, I have trouble twisting off the caps on a lot of them, depending on the design of the cap and the brand of the food that I’m eating. So, arguably a lot of food packaging is really inaccessible, and for that matter one could have trouble opening up the plastic container.
Emily: So, it just comes down to what one person can do and what one person can’t do. So nothing is ever really universal to everyone because you might be able to get a great grip on a cover to a container that just doesn’t work when I try to open it, or vice versa.
Kyle: And, actually that brings up potentially a different show which is Universal Design and is it real or is it just fantasy?
Emily: Stay tuned for the next episode!
Kyle: But it’s true! I mean, what people–I don’t know if they don’t realize it–I wouldn’t say that, that’s a little too cynical. But what I would say is that what people with disabilities often forget is it there other people with different disabilities in the world, and it’s very easy to get caught in your own, or at least if not in your own disability, get caught up in your own limitations.
Emily: Or abilities.
Kyle: Yeah, or abilities that you forget that there are others with a different set of those than you. So, what is accessible to one person might not be accessible to another. This is sort of facetious, but I always say that I prefer stairs to ramps, and that’s not actually true but the reason that it easier for me to stand on the step than it is for me to stand on a ramp is because it’s easier for me to stand on flat ground. I will never argue against ramps because obviously that makes it more accessible for more people, but the simple fact of the matter is if I have to pick a place to stand, I’m going to pick a flat place. And that flat place is stairs more so than ramps. and that is a giant issue when it comes to accessibility, where the issue becomes “how much is too much and is this much enough?” I think Emily, one of the best things you’ve ever shown me was Gallaudet University where they designed everything to be accessible if you’re deaf.
Emily: Yeah, deaf space.
Kyle: And I think that that’s brilliant because rather than focus on Universal Design– and I’m not saying that Universal Design is bad, because it’s not– but I will say it’s a bit of a pipe dream.
Emily: …But they focused on meeting their own needs.
Kyle: They focused on meeting the needs that their students needed the most period and what the end result was was fabulous. Tangentially, it help people with other disabilities, like they had wider hallways so theoretically a person who uses a wheelchair can roll down the hallways easier. But that wasn’t their primary goal, their primary goal was to make it so that their body of students and staff who are primarily deaf could go to school. And they achieved it because they had a specific goal in mind.
Emily: But I think in talking about accessibility, and how it means different things to different people and how Universal Design is open to interpretation, it makes me think of how one of the first issues that people go to in connection with disability is environmental access, but another
place where it’s interesting to consider picking your battles is when it comes to media representation. Because that seems to be the other major area that we focus on and it comes down to is a TV show with an orange, or the orange was the TV show… we forget sometimes that one television show.
Kyle: Instead of television…
Emily: In general.
Emily: I know sometimes you need to take again that bottom-up approach where you start with advocating for better representation on one television show, but then you’re influencing the people who see that television show and how much of a spreading effect is that going to have? So, does it make sense to advocate for better representation on an individual basis, and treat your TV show like your oranges? Or do you look at the bigger picture…? The bigger moving picture if you will. Can you not handle my puns?
Kyle: I’ve refrained from being punny [Emily laughs].
Kyle: I agree, there’s not really much more to say about that, and I think media representation is a good third episode.
Emily: But I think I did rather than agreeing or disagreeing with what I say what would your approach these would you take that approach where you’re focusing on one TV show at a time or…
Kyle: In terms of media?
Emily: Yeah. Or how would you… [Kyle interrupts]
Kyle: Media is a bit of a finicky beast, isn’t it? Because you have the issue of actors and disabled roles… but assuming that your representation is represented by the people you want to represent it, I think, then, the best approach is to–in cases of media–go on a case-by-case basis, ideally on a popular show… my favorite example of this is–sort of–Glee… I loved the first season. And it’s the only season I watched.
Emily: Really? I didn’t peg you as the Glee watcher…
Kyle: Well, only the first season, then it got all social-justice-y and terrible. [Emily laughs]. The reason that I use this as my example is because it took the stereotype from every disenfranchised group of people that you could possibly think of and stuck stuck them all in this high-school that was liberal and accepting and that was great, there was nothing wrong with that. Except for the character in the wheelchair, whose name is Artie… and you had all these professional Broadway and off-Broadway singers playing these disenfranchised people and they were great at it! But they got the one freakin’ professional dancer–first of all–to be the guy who sits in the
wheelchair. That’s thing number 1. I mean, that’s irony and I don’t even know why he even took the role, but the second thing is, the actor doesn’t use a wheelchair in real life and whether or not non-disabled actors should play disabled roles is a completely separate debate, but my point is the one thing that show did do to its credit was show that people with disabilities, or in this case a person with a disability, was more–I gotta choose the correct wording here because people who potentially listen to this might crucify me–that there was more to a person than their disability and their disability wasn’t being used as a story arc, at least until the second season when I stopped watching. And millions of people saw that and I would like to assume that that influenced at least one person and their view of disability. So I think in terms of media that you should start from the inside and work your way out. But in terms of fruit you should start from the outside and work your way in, I suppose. [Emily laughs] If any of that made sense, if any of you stayed with me through all that I applaud you.
Emily: I think I follow you I think that the real issue is that there is no one the right way to be an activist but ultimately though the key phrase of what we’ve been talking about it and when we go back to is the picking your battles, but more so the picking your approach to the battles and deciding what is actually going to be most effective. You know, sometimes angry tweeting feels really good for an angry Facebook post feels really good, but that’s letting off steam. Which is super necessary, but in the end is that really going to lead to the changes that you’re hoping for or is there another way to approach it so that you create a bridge rather than burning a bridge.
Kyle: Or creating silos.
Kyle: There’s nothing wrong with anger. Although I will say in most cases, it’s justified to be angry. I can’t tell someone why they should or shouldn’t be angry, that’s totally a personal thing. But, if you want someone to listen to you, you sort of have to lead them into your direction. Especially, by the way, a person who is able-bodied who literally might be–I don’t wanna say– but who probably can’t see ableism if it was sitting right in front of their face. Just because they don’t know what to look for, you know? Somebody who has no experience with this type of thing isn’t going to know what it is. No matter how much you explain it to them, if you do it in a way that they can’t wrap their heads around.
Emily: There’s a quote that I really like that I keep going back to–I only just heard it last month actually, “the art of advocacy is to lead you to my conclusion on your terms” from a man named Adam Grant and so basically it’s saying–you were just saying you know we need to find a way to make our arguments something that other people can wrap their heads around so it’s basically like we need to lead the horses to water and then we need to let them figure out how to drink with our guidance rather than forcing them to drink in the way that we want them to… to use 8 million different sayings.
Kyle: I think that’s–I don’t wanna say the only way but I really do think that that’s the best way. You can yell at your adversaries all you want, but–I gotta be careful not to use any disability metaphors, you can probably guess the one I was about to say.
Emily: You know, they just end up in our language!
Kyle: You know what? I’m gonna say it, it might end up falling on deaf ears, if the people don’t know what you’re screaming about. I mean, they might know the words and they might see where you’re coming from, but unless you can get around that and instead get more to why this is a problem, and make them realize–whoever they are–that it is, in fact, a problem, then you’re much more likely, in my opinion, to get a better result.
Emily: I agree with you. And, also using a disability metaphor also makes me think we’ve touched on accessibility and we’ve touched on media representation but I think the last kicker is really language and disability.
Kyle: I could go on for days about that.
Emily: Of course, I think both of us could, we should in another episode! But to keep it short and sweet. the major issue–and I do this all the time is call people out on their use of things like “wheelchair bound” or “suffers from a disability” or “special needs”. I’m big into semantics and I’m big into the meaning of words, but sometimes even I stop and think for a minute “am I effectively making change?” if I’m arguing against one reporter using terminology that I don’t like or one person who prefers the term differently-abled or special needs when I believe in the word disabled, am I making a change? Do I look at it as changing one mind at a time or opening one mind at a time as a positive thing? Or am I in another situation where I need to pick my battles?
Kyle: I mean, that’s a weird case because on the one hand– I’ve seen you do it and you do it in a way that’s very masterful in my opinion, you do it in a way that isn’t very angry but more like “hey by the way”, and I think if you’re going to do that, that’s the way to do it. But to your point, on the other side of that you have– and this isn’t necessarily what I believe– on the other side of that you have the argument that says something like “it doesn’t matter how I say it, as long as you know what I mean, my message still gets across”. That’s not untrue, however I’d be lying if I sat here saying that the way things are said isn’t as important if not slightly more important than the message itself. However, I don’t think it is necessary to be careful as much as people who speak about disability are. Disability is very unique. It’s a very fragile beast that nobody wants to poke too hard, but also nobody knows how to talk about it and that only comes from the fact that so many people prefer so many different things, and there’s no “guide book” on this sort of thing nor should there be, right? Because every person with a disability has a different outlook on disability itself. [Emily interrupts:] Right.
Kyle: But I happen to think that changing one reporter’s mind is a step in the right direction no matter how you do it, so go you.
Emily: So, there’s a benefit to smaller scale activism I think in all of the cases that we’ve talked about. But maybe especially so when it comes to language because language is directly intertwined with perception of disability and if we can change perceptions, then we can start winning the other battles.
Kyle: Actually I think that’s probably where you should start, I think that if you can change somebody’s opinion on you before they can make one, then you’ve already won half the battle. Or, even better if they’ve already made one and you managed to change their minds. And I think a lot of that has to do with words and communication but that’s an entire thing for a different episode if I don’t stop talking about it now I won’t stop until around 4 in the morning.
Emily: it seems that we took a backwards approach, but we almost traced our way to–we said “crux of the issue” a couple times throughout the episode–but I think this is the actual crux of everything that we’re talking about is that the way you communicate the things that you’re choosing to advocate for is what’s most important.
Kyle: And I won’t ever say, and I don’t think Emily will either that small-scale acts of activism aren’t important, sure they are. but, what I want somebody who listens to this to get out of it is not that some things are more important or better than others, but rather that perhaps effort can be better allocated in places that need it more, and I personally don’t think oranges are that high on the list, even if it means that they can be used for accessibility, my question to you would be “why not attack accessibility? Why not go for accessibility?” Don’t zero in on the oranges.
Emily: I definitely get what you’re saying because I never want to denounce small-scale activism, that’s entirely unfair. I think that people advocate in the ways that they’re capable of and that all activism serves its own purpose and value as long as it’s for the good of people and not advocating for something that’s outright negative or harmful, obviously. And if an orange, I know we keep going back to that, but it really I think is sword of the metaphor for this small- scale activism.
Kyle: it’s also what sort of tipped this off.
Emily: Yeah, I think it’s what made us want to have this conversation. if that’s the big issue at the moment, sure you can talk about it, send a tweet, try to make sense in a blog post of why a pre peeled orange provides better accessibility, but at the same time understand that that’s probably not going to be what tips the scales towards complete inclusion of the disability community.
Kyle: And also, I mean I’m not able-bodied and it’s sort of hard for me to imagine how an able- bodied person would interpret this, but I imagine just out of common sense that it would be rather difficult to argue for or against, if you’re one of those people, accessibility using fruit. There are so many better examples arguments for accessibility that I think–and again, I’m not going to say the people who argue with oranges are wrong or bad, but I think that there are… bigger problems…? [Kyle laughs]
Kyle: As much as I hate to say it, in accessibility, you can eat fruit even if it’s got peels. Most fruit has a peel on it. You’ve eaten fruit before.
Emily: Yeah, and there are some really huge issues.There’s issues with insurance, there’s issues with Social Security, there’s issues with finances, there’s issues with employment. So, sometimes
I think that those issues can be a little bit intimidating to tackle and it’s easier to focus on the smaller victories. But sometimes, you have to make those scary leaps.
Kyle: Yeah and I think to the people who made this orange issue into one of accessibility that you–I’m not going to even say that you’re wrong, I think you’re certainly on the right track–but I do have to wonder… why?when I step in front of a building that you need to go into… if you use a wheelchair you probably can’t do that short of doing something like crawling which might be something that a person with a disability doesn’t want to do for the sake of their own dignity.
Emily: But you can find another way to eat an orange
Kyle: …but *could* if they were really really had to, but you can probably find a different way to eat an orange with your dignity intact without any problem.
Emily: That’s a good point, not to detract from any of the activism that anyone did surrounding the issue but just to point out that sometimes there are workarounds to things, and in the case of peeling an orange there’s a workaround to that. In the case of steps up to a building, there’s not really a workaround to that.
Emily: That’s a wrap on the first episode of The Accessible Stall podcast.
Kyle: C’ya next time!
Emily: Thanks so much for listening!
Kyle: We would promise you a date but we don’t have one yet!
Emily: But stay tuned, because it’s coming up!
Kyle: Bye guys.