The Accessible Stall

Episode 004: Identity and Microphones

TRANSCRIPT

Emily: Hi, I’m Emily Ladau

Kyle: And I’m Kyle Khachadurian

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

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

Emily: Well first of all, we’re going to talk about our new microphones

Kyle: Yes, they sound very sweet.

Emily: Well so we hope because in the interest of total honesty, this is a temp number 5000 to try to make it sound good.

Kyle: It’s actually number three, but who’s counting?

Emily:  Apparently you are and I’m not.

Kyle: Mhm.

Emily:  But anyway, now that we’ve gotten that out of the way, we are excited to get into her fourth episode and we are going to talk about disability and identity. So why are we talking about that Kyle?

Kyle:  We’re talking about it because it’s very vague and everyone in the community sort of has a different idea of what it means so for example, this is one area where Emily and I really don’t agree at all and we’re going to tell you why.

Emily:  So it’s interesting because I think we agree on most things actually when it comes to disability but this is one where we’ve never been able to come to some kind of consensus because I feel so strongly in one direction and you in the other. I think that disability it’s something that I considered part of my identity it’s something that I count just as much as I would count being Jewish or being female and it’s something that I consider a large aspect of what makes me who I am, and I would say that you largely differ from that.

Kyle:  yes. I acknowledge my disability and I acknowledge its existence and it is a part of me but it means as much to me as me being a male or me being brown eyes or something, it doesn’t really have any intrinsic value and it doesn’t play into the person that I am, although I’ll give it credit for the person I became but that’s it. It’s just there, so to speak.

Emily:  I’m not sure that I get that because if you’re saying that it has something to do with the person that you became, then becoming means that you know are what you became.

Kyle:  well I mean that in sort of things like employment and social awareness common like all the work I’ve ever done has been disability focused and I don’t know if that would be true if I didn’t have it, but at the same time I don’t know how much that actually matters so even though it helped me become this guy I don’t wear it on my sleeve, I just don’t. Although, I respect people who do.

Emily:  I am the type of person where is it on my sleeve. But it took me awhile to get to that point because for a really long time I did everything I possibly could to separate myself from my disability and I always tried to come across as being one of the able-bodied or non-disabled crowd if you will, and I hate to say this but I would use disability when it was convenient for me but otherwise the biggest compliment you could pay me was to say “oh I totally forgot you were in a wheelchair”,  I used to love when people said that to me and now it makes me so sad because I consider my disability so inextricably linked to who I am that if you’re forgetting that have a disability then you are kind of forgetting what makes me me in a lot of ways.

Kyle: I think a lot of that has to do with using a wheelchair though don’t you think? Because somebody who forgets I’m disabled it’s like yeah it’s a compliment because to them I pass, to them I did it, I made it.

Emily:  yeah there’s no way I could ever pass, and passing meaning appearing that I don’t have a disability because I wear my disability attached to my butt every day, like it or not. and so I guess having that highly visible piece of equipment has led me in the direction of just embracing it. I mean, I have a tattoo of a peacock feather on my wrist and part of the reason that I got it it’s because I’ve always felt like a peacock stands out with all the feathers that they have and I’m not calling myself a peacock over here, but I feel like maybe my chair in a way serves as my feathers, because it’s really noticeable and so I’ve just turn that into something I take pride in.

Kyle:  I understand that but at the same time, I’m a person who is much more proud of the things that I’ve done than things that I am mostly because I’ve had no control over things that I am, but have total control over things that I do.

Emily:  sure but the things that you are and then a bleeding in some way or another to the things that you do. I mean, think about your experiences when you were younger, I went to a mainstream school and I know that you went to a school for people with disabilities.

Kyle: Yeah

Emily:  so, you don’t think that that place where you got your education for  how many years out of your life so far had something to do with who you became?

Kyle:  Yeah well, when I said that it gave me more knowledge about disability and it gave me more knowledge about the “world”, it certainly did that, going to school where I did, but that’s all it did.  I don’t think I got a stellar education or subpar one in a school that was just for people with disabilities.

Emily:  oh yeah, I’m not talking about the quality of the education. but just being surrounded by other people with various disabilities day in and day out, that was never the case for me,  so in a way it’s almost interesting to me that you’re the one who considers disability as just a fact of your existence and not as an identifier, whereas for me  I’m very conscious of it being and identify it even though I wasn’t surrounded by it.

Kyle:  I think being surrounded by it is part of the reason why it’s just not an identifier, because it was so normal that it almost didn’t matter. As much as I hate to say that. But it’s true. It just was. Everyone was disabled, and if everyone’s disabled no one is, in a weird way. there’s nothing to stand out, everyone just is.

Emily:  yeah, I hadn’t thought about it that way, but you’re right. I think there’s logic to both sides of it. I know I went to summer camp as did you less than I did but we went to a summer camp for kids with disabilities and there I was so conscious of my disability, I also felt very comfortable in myself for those few weeks, but at the same time being surrounded by disability really made it stick out to me that I am disabled. But I don’t think that was what really caused a shift in my mindset for embracing disability, I think it was once I stop seeing disability as something that I needed to suppress for most of my school year and for most of my life, and I started realizing that it was just another aspect of what makes me Emily then I began to identify as disabled as and identity just as much as I am so many other things.

Kyle: that makes sense I suppose. I guess it’s because I was so inundated with it for my whole life that by the time I got to college I was just like “get it away from me” [Emily laughs]. No, I’m serious!  I’m not ashamed of it but how much is too much? And I think that being surrounded buy it certainly didn’t help in that regard.

Emily:  well the how much is too much question sort of points to another aspect of disability in that sometimes or all the time I would say, or pretty close to it, you’re expected to being an advocate or an activist as a direct part of being a disabled person.

Kyle: Yes.

Emily:  And for me, again here’s a large place where we differ, I proudly call myself an activist, you again…

Kyle: Don’t. At all.

Emily:  I was going to say run screaming in the other direction but don’t works too. [Emily laughs]

Kyle:  I do, I run screaming in the other direction.

Emily:  and so how come that’s the case? Because I mean we’re sitting here doing this podcast and this in and of itself is a form of activism, not a preachy one but it still is so I’m curious why you stray away from that.

Kyle:  well because I sat here with you for about 30 minutes one day and discussed picking your battles and I found that the general Battle of activism wasn’t really for me, but also unlike you and I happen to think that as long as it doesn’t inconvenience me it is my job to educate you– the you at large–and that’s a very unpopular opinion in the activism community but I think that that’s the exact opposite opinion of what they should have to be honest.

Emily:  so you’re saying that because you’ve noticed my hesitance  to be a teachable moment on wheels that… what are you saying? I want you to explain this to me actually. because, why is it that you don’t want to be called an activist but at the same time you are willing to be an educator?

Kyle:  because I think activist is a title that you can call yourself, I’m not gonna take that away from anybody, but that’s sort of a title that you earn, and I would say that YOU did but anyone can educate and I think that the best way to advocate is to educate and I would much rather be called one than the other because there’s no baggage with an educator first of all, but secondly it doesn’t have the pressure and responsibility of having to always be “on”  all the time so that’s what I’m saying.

Emily:  yeah, that’s really a good point because I do as we talked about earlier where my identities very much on my sleeve so in a lot of ways because I am disabled, because I am an activist, and I actively Define myself as those things I do feel this constant need to have an “on” switch and to always be on top of my game and if I don’t jump on every single disability issue that I somehow feel like it’s a betrayal of my identity.

Kyle: Yeah, but…  I shouldn’t have probably waited until 12 minutes into the episode to say this but I’m very weird about labels, I don’t dislike them, but  before I call myself anything I try to make sure that the person I’m describing myself to knows what I mean when I say certain words because a lot of them are very loaded and I think after this is one of them,  because you sort of get this mental image in your mind of somebody and I don’t want to be a part of that.  I respect people who do, I’m not making fun of anybody and I’m not taking anything away from anyone but in order for me to use certain words to identify myself I like to make it very clear what they are first, and when I do that I find often that you don’t really need the words anymore which is why I try to stay away from it all.

Emily:  I can understand that it’s really unfortunate that activism gets such a negative rap but there’s a term that internet trolls love which is social justice warrior and I’ve definitely seen my name linked to that term…

Kyle: I wouldn’t call you that.

Emily:  right but some people would if they take my work and they don’t know the context that I usually write him, so I wrote about a commercial, the Guinness beer commercial where there were people playing wheelchair basketball…

Kyle: I liked that commercial!

Emily:  yeah see I did not like that commercial and you did like that commercial and I one day was kind of clicking around checking how people landed on my blog and I ended up finding a conversation about that blog that I wrote and people were calling me a social justice warrior and saying all these negative things about me and in that moment I was frustrated by being an activist and calling myself an activist because it seems like the people who I really need to reach are the ones who don’t take you seriously but I’ve learned not to let that be a deterrent to my identity.

Kyle: Well, it shouldn’t, but…  I feel like if you really want to reach the people who need it most, you kind of have to– I mean, you said a quote in the first episode which I can’t remember because I’m trying to think about it.

Emily: Oh! It was “advocating is getting you to see my point of view on your own terms”

Kyle: Yeah, something like that. And I think that’s what you have to do, and I think that’s what you do now. I don’t remember how good you were back then but you certainly– you did it, and that’s good but I don’t know… trolls will be trolls, right?

Emily:  Exactly, sometimes you just gotta let it roll off your shoulders and speaking of activism I think one of the biggest things that I am an activist or an advocate for is language as it comes to disability

Kyle: Oh here we go…

Emily: Yeah,  I know but I really wanted to bring it up in this episode because language is a major subject especially for us because I was an English major and Kyle with a double major one of those being linguistics and so the two of us are really really attentive to language and the meaning of words and so when I advocate a lot of it has to do with person first language and identity first language and I’m willing to bet that most people have heard of person first it rather than identity first because it is the way of the academic and professional and medical world right now. Person first language is saying “person with a disability” and there’s absolutely nothing wrong with it but there’s a huge camp of people– and I do believe it’s huge at this point– people who have come to embrace disability as an identity and they use identity first language which is saying “disabled person”, so this is something that I talk about a lot and I think that it does make people feel a little bit unsure about how to identify me or how to refer to me because they worried that I’m going to call them out for using the wrong language.

Kyle:  yeah, I also prefer identity first which is ironic,  but I prefer it because it’s correct English, it is,  we put our adjectives before our nouns.

Emily: Right, it’s a descriptor,  and that’s really what I try to tell people. I considered disability and identifier as in it is part of my identity, but if you don’t want to go that far it’s a descriptor it not derogatory word, it just is.

Kyle:  yeah, I wouldn’t call a derogatory word ever.

Emily:  but I think there is something that is a derogatory word that we should also talk about.

Kyle: Which one? Is it the R-word or the C-word or the other C-word?

Emily: Ha ha, it’s “cripple”, we should talk about cripple.

Kyle: Right, that’s one of the C-words.  now, I don’t like that word at all.

Emily:  why?

Kyle:  Because I’m not a cripple and I was asleep for the meeting where everyone with a disability decided that that was the word we’re all going to use. I forgot to send in my absentee ballot, I didn’t put a stamp on it, I missed the boat, how many more euphemisms can I come up with? [Emily laughs]

Emily:  oh, you’re making me want to jump topics now because I also want to talk about euphemisms and disability so remind me to get back to that, remind me that I said that because I really still want to talk about cripple. So, cripple is a word that has come to be reclaimed by members of the disability community. Certainly not all but a fair amount. And it’s also used in various movements and campaigns and initiatives so you can “crip” something,  as in it’s a verb

Kyle: Oh that’s the worst…

Emily:  why do you think that though?

Kyle:  I just don’t like it. I just don’t. You ever not like something? It just rubs you the wrong way?

Emily: Sure!  I understand that but I also think that it’s effective and that it grabs attention.

Kyle:  it does do that. But here’s why I don’t like “crip the X”.  I almost always like what the “X”  is like “crip the vote”,  I’m all behind that. getting presidential candidates to care about issues related to disability is great, but when you make crip a verb,  it’s off-putting to the people who need to hear it most, and it’s embraced by the people who need to hear at least and I think that’s why I don’t like it although it does have that element of shock value, and I appreciate it for that and it’s the same thing with crippled I suppose, but I just don’t like that word because like I said I’m not one, and I just don’t think a group should be able to own a word on principle, I get that a lot of people think that but I don’t. And I’m not afraid  of words, I don’t censor myself but I also don’t–what am I looking for?–I don’t succumb to the fact that because I’m disabled I have to use that word to identify myself with.

Emily:  oh yeah, I don’t think anybody HAS to do anything,  I mean I was adamantly against the use of the word crippled for a while but just being who I am and being involved with what I’m involved in in terms of work and community activity and things like that, cripple has sort of slipped its way into my vocabulary and it’s to the point now where even my mom and dad use it, so they’ll say “oh we got the cripple spot! we got the cripple spot!”, you know?

Kyle:  well I’ll do that, that’s a joke.

Emily:  yeah of course it’s a joke, but that’s usually how I use it and I think that’s okay and really I think that using whatever words you want to refer to yourself is ok as long as you don’t impose that another people. That’s the big issue.

Kyle:  Yeah, I would say so too.

Emily:  Because, especially with language choice going back to person first vs. identity first, same person with a disability verses disabled person, I’ve always felt that people who are  big proponents of do it with the absolute best of intentions because they want to ensure that you are acknowledging a person as a person and not just seeing the disability, but at the same time I think that implies that you are less of a person or you’re not a whole person so you have to remove the disability and sort of hold it at arm’s length, and again I know it comes from a place of respect, but I have always felt like it’s just another aspect of who I am rather than something to be ashamed of and that’s why I’m so adamant about using “disabled person”  and calling myself disabled.

Kyle:  yeah, it just sounds better to me.

Emily: See, you have  a much more simplistic reason for using it than I do.

Kyle:  yeah, but whatever works right? We are on the same page.

Emily: Yeah and, oh! I remember!  I want to talk about euphemisms can we please?

Kyle: Yes.

Emily:  I think you know what I’m going to say but what’s your take on euphemisms?

Kyle:  I don’t like them. Because, I think they sugarcoat things to the point where those things that they sugarcoat become unidentifiable and it loses any and all meaning. So for example, I know your favorite is “special needs”,  but I would say that people with glasses have special needs because they can’t see so they get specially needed tools to put in front of their eyes, it means nothing. And it’s just a word that people use–or  or a term that people use to make themselves feel better.

Emily:  see I feel a little twitchy talking about the sort of thing because I just really am bothered by the use of terms like “differently abled” or “physically challenged” or “special needs”  because I just don’t feel that it really gets to the heart of the issue.

Kyle: Which is?

Emily:  that you have a disability! that you don’t have the ability of the majority

Kyle: Most of the world?

Emily: Yeah! and I suppose that people could argue that disability is not really a great word because it’s creating a sort of binary between abled to and not abled.

Kyle: So?  that’s exactly what it’s doing. and that’s exactly what it’s for. you’re either abled or you’re not, it is a binary! Binaries aren’t always bad!

Emily: No I’m not saying it’s a bad thing necessarily,  but who’s to say what ability really is?

Kyle: C’mon that’s…  I know what you’re saying but if you take an able-bodied person– well if you take a non-disabled person, which is your typical human being and you remove something, that’s what a disability is, and that’s okay there’s nothing wrong with that, but it’s a binary, you’re either disabled or not, you can’t be kind of disabled–I’M kind of disabled!

Emily:  yeah but I think that’s cause to you as much difficulty as it has in terms of being positive thing because I know we’ve talked about a lot way before we started this podcast how you’ve been told you’re not disabled enough.

Kyle: Right. by people with disabilities. People without them don’t– they take my word for it, so it’s on us.

Emily:  is that alienating to you?

Kyle: yeah but I mean what can I do about it? I mean it’s within the community, you can’t fork the disability community, I mean sure you can but what’s left after that?

Emily:  Well I do wish that people in the disability community would be more aware of the fact that there really is no such thing as a disability hierarchy.

Kyle:  no but, there’s a hive-mind that our community has that if you don’t agree with it a lot or don’t succumb to it every once in awhile that you’re wrong and I’m wrong a lot according to the silent majority– or the loud minority rather.

Emily:  yeah, because the thing is that this hive-mind that you’re talking about is really the disability bubble that we are in on social media and in our day-to-day lives just because these are the people that we surrounded ourselves with, so we hear opinions from a particular group of people day in and day out and those are the ones that I think you tend to feel like you should share.  and I’ll admit there’s a couple of things that I have not always agreed with, but then I get a little nervous about saying that because then I don’t want to lose my disability card for my activism card if I’m allowed to pull a Donald Trump for a second.

Kyle:  no but that’s my point I don’t think you should be afraid and risk anything for having an opinion and the fact that you do says a lot more about the community than you.

Emily:  yes. Also though, I don’t want this to sound like it’s an attack on anyone, this is more just us keeping it real about how complex and tangled the web of identity and community can truly be.

Kyle: yeah, we’re not here to attack people that’d be silly.

Emily: yeah, we’re not about that. But there’s so much to think about and I know this is going to be a little bit of an abrupt jump but I also wanted to make sure that we talked about when person first IS supposed to be what you use and when “identity first” is not really identity first, so examples being when you use an object to identify someone so like calling me a “wheelchair person”

Kyle: But… [Kyle laughs]

Emily: Go ahead and say it!

Kyle:  okay, if you’re in a room and you’re the only one, you’re a wheelchair person. I mean, you’re not [Emily laughs],  but have you ever tried to describe somebody without using their skin color? that’s what wheelchair is to you, you just have to, and that’s okay, I mean you shouldn’t do it, you should say “oh, she was a person in a wheelchair”, but if you’re one out of a hundred that’s how people are going to remember you even before your name. and that says a lot about society but it’s also not something to ignore.

Emily:  yeah and also wheelchairs have such a negative connotation to people it makes me so angry, I mean your described so often as “confined to a wheelchair” or “bound to a wheelchair”  or disability, also a negative, “suffers from a disability”

Kyle: That’s a good point… you can go on.

Emily: Oh I thought you were gonna… drop some Kyle wisdom

Kyle: I was I’m gonna let you finish.

Emily: Imma let you finish… [Emily laughs] yeah, I just wish  there was at least some consciousness of what not to say, I think there’s certain things that you really just should not say, some things are very much personal preference when it comes to Identity but some things are just not cool. don’t call me wheelchair person, don’t call me wheelchair-bound, I mean I’m not, my wheelchair is my freedom, it’s a part of how I get around and that is a part of me, I do consider it part of myself, because it’s essentially a stand-in for my legs but it’s not something that I’m literally tied up to.

Kyle:  the people who argue against that would say that they’re bound to it in the sense that– in the same way that you’re saying it’s your freedom– they would say that without it they can’t move therefore they are attached to it, therefore they’re bound to it, it’s like the other side of the same coin…  you’re saying the same thing. I don’t have a preference, I mean the de facto  is wheelchair user so that’s what I say but I won’t get on anyone’s case for it.

Emily:  I think that “wheelchair user” vs “wheelchair bound”, even though this is just an argument about semantics over here, when you’re bound to something it sounds like you’re trapped but when you are the wheelchair user, the power is back in your control.

Kyle:  I get it. And regarding “suffers from”,  it’s funny I hate that one so much, because I actually hated, it’s just a treasure trove of misinformation

Emily: What do you mean?

Kyle:  so “sufferers” has a definition and one of them means “to be affected by”,  and so literally everyone with a disability suffers from it because without it we wouldn’t have one, but that’s a word that almost always comes with negative connotations, kinda like the word awful. it’s synonymous with awesome but you’d only ever use one to describe something bad and so while it’s not wrong to say, be mindful that by using it you’re putting negative imagery in the heads of your listeners and that’s not good.

Emily: yeah that’s what it all comes down to is the image that a word puts into your head so I think that’s why a lot of people are hesitant to use disabled or disability as an identifier or to consider it part of their identity because we’re just–

Kyle: Well they change too.

Emily: What do you mean?

Kyle: I mean, words–they change, they change meaning.

Emily:  oh yeah, language evolves all the time, for sure.  and also we have this Collective image in our head that disability is this terrible tragic thing when really in the vast majority of cases it’s not and so I understand when you’re attacked every day by a society that says hey disability really sucks and your life sucks and everything is terrible, then sure, you’re not going to want to call yourself disabled but if we just see it for what it is as a descriptive terminology, and also as something that has a culture behind it– a rich and wide culture in which there are tons of people that came before me who did incredible advocacy work that I look up to then we stop seeing it as a negative and we start seeing it as something that just is.

Kyle:  yeah, I don’t see it as a negative, I just– it’s there. I don’t distance myself from it as an identifier because I’m ashamed of it– that’s something that I actually never really went through– I feel like I’m late. it’s going to hit me later in life, I just don’t like it because I don’t see a point, I mean I get why people do it, but it’s just not for me, I don’t gain anything from describing myself as a disabled person–except for occasionally better seats at concerts–than I do any other word.

Emily: yeah, not going to lie sometimes being disabled isn’t so bad, and we can definitely– or we should definitely talk about disability parks and another episode.

Kyle: Yeah, we should, they’re pretty great. [Emily laughs]  it’s not really a fair trade but when you think about it,but if you don’t think about it too much it’s pretty good.

Emily:  yeah sometimes they’re just silly, the “perks” that you get but perks or not,  I mean I’m very proud to call myself disabled, it’s something that I’ve grown into even though it’s been with me my whole life it’s finally something that I say without feeling this little twinge of shame or being embarrassed.

Kyle: I think part of the reason why I never called The Pride but I guess because I never had the shame, I’m serious. I imagine if I had that that I’d be more willing to shout it from the rooftops, but for me it was always such a non-issue growing up, or such an invisible one anyway that I never looked at myself and said “man,  I don’t like me because of my CP”, that never happened.

Emily: Do you think that has to do with the fact that your disability is not very visible?

Kyle: Yeah, I do, because on it’s worst day, my CP kinda just… is annoying. I mean it hurts a lot, but there’s medicine for that, on it’s worst day all it is is a trickster, but I realize that most people with CP and probably disabilities can’t say that. So… there ya go.

Emily: and also it’s not very noticeable in most of your movement either.

Kyle: Yeah that’s true.

Emily: So, I don’t know if that has something to do with why you are so… almost indifferent…

Kyle:  I am totally indifferent, that’s exactly what I am. [Emily laughs] I’m completely indifferent.

Emily:  and yet you’re not though, I’m going to push back on that one because here you are doing this podcast.

Kyle: I’m sorry, I’m indifferent to it as an identifier Kama that’s what I’m indifferent to, but in terms of using it to be a better person, in terms of using it to help people and educate people then sure. If that’s your definition of an advocate which by the way is it, but if your definition is to where the wheelchair symbol on your shirt and to shout it from the rooftops I’m not about that life man, it’s not for me.

Emily:  so you’re not getting a tattoo of an accessible symbol on your shoulder anytime soon?

Kyle: well, I mean if this becomes the top 10 listen to podcasts of all time, but no I’d rather be caught dead.

Emily:  oh, hold on know you heard it here first, so I think I’m going to challenge you.

Kyle: Oh here we go.

Emily: Yup. if this project becomes popular, I don’t exactly know what the measure of that would be.

Kyle:  Top 10 of all time.

Emily: All time? Okay that’s a lot to contend with.

Kyle: Yeah.

Emily: We have to contend with Serial and all the good NPR ones, okay but when we eventually Reach This pipe dream, you are going to get a giant accessible icon tattooed on your shoulder.

Kyle:  but even in that case though Emily,  it wouldn’t be for disability would be for this. That’s the difference between everything.

Emily: Yeah but people would see it and…

Kyle: People would see it and get angry with me because I’m not in a wheelchair is what people would do.

Emily: Probably. Or, they would see it and say “oh wow he has a lot of disability pride!”

Kyle: Yeah, which is like the worst thing I would ever want anyone to think about me. [Emily laughs] It’s true! My god!

Emily: no, it’s in there somewhere. It’s there.

Kyle: it manifests itself through the podcast, that’s it.

Emily:  no they were definitely precursors that led up to this podcast.

Kyle:  arguments with you

Emily: Right. Arguing with me is fun. If that’s where your disability pride comes from, then good! I’ve done my job.

Kyle: Yeah, there you go, you’ve earned your activist stripes, you did it, good for you, you can go home now. [Emily laughs]

Emily: what color are my stripes?

Kyle: White and blue.

Emily: Oh, yes.

Emily: Anyway, so clearly Kyle and I were getting a little silly just now but as we like to do, we just kinda want to wrap it up and leave you with the takeaways from this episode that we hope you’ll carry with you after you’ve listened to it, so if you could sum up identity in one word, what would it be?

Kyle: Yours. And yours alone.

Emily:  alright, hey! that was three words

Kyle:  well I said yours, but it took you awhile so I just sort of clarified.

Emily:  oh I didn’t know if you were going to throw anything else out there

Kyle: Nope.

Emily:  I’m going to say identity is complex and personal because you got three words so I get three words.

Kyle:  that about covers it.

Emily:  And I think that’s a wrap on episode number 4 of The Accessible Stall! Thank you so much for listening! I’m Emily.

Kyle: I’m Kyle!

Emily: And we will catch you next time, bye!

Kyle: Bye!

Download a .pdf of this transcript by clicking here.

Episode 003: Sex, Dating, Disability

TRANSCRIPT

Emily: Hi, I’m Emily Ladau

Kyle: And I’m Kyle Khachadurian

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

Kyle: Hey Emily…

Emily: Yeah?

Kyle: We’re gonna talk about sex!

Emily: Oh, hold on, back up there. Take me out to dinner first!

Kyle: No, today’s episode is gonna be about romance and dating and sex. [Emily interjects]: And disability!

Kyle: Well everything we do is about disability, don’t you know the name of our program?

Emily: Just making sure our listeners at home know too.

Kyle: So dating and disability is one of those things that… dating is awkward for anyone, I think. I don’t know ’cause I’m only one person, but I imagine that when you have a disability it’s a lot weirder because you have almost a responsibility, you can either just close it or you don’t have to.but that’s only if your disability isn’t visible, if it is visible do you just not say anything about it? Or do you put it in your profile picture and just have your wheelchair be there, or do you explicitly say it? There are many many things and decision that you as a disabled person have to make an able-bodied person doesn’t have to make, and we’re going to talk about all that cool stuff today.

Emily: So should we start with dating when you meet someone organically? Or should we start with online dating, because boy do I have stories about both.

Kyle: I mean… what are you from the 1950s? I think online dating is fairly organic these days.

Emily: I suppose that’s true. Okay so we’ll talk about online dating because I have definitely had my fair share of forays into online dating and sometimes it’s gone somewhat well, sometimes it’s gone very well and most of the time it’s been completely miserable failure. and so much of that like it or not has to do with my disability and and my decisions to either share that I’m disabled

or withhold that I’m disabled initially when it comes to communicating with people on online dating sites.

Kyle: Well I know I just made fun of you 2 minutes ago, but I actually don’t have any experience in that so I think you should sort of man the reins for this part of the discussion.

Emily: Okay I can definitely take this one, seeing as how I have a little bit of experience in that field. I downloaded apps out of curiosity more than anything else so, I had Tinder on my phone and all of the Tinder knock-offs and in those they tend to pull your photos from your Facebook so I thought long and hard I said “do I pulled the photos that have my wheelchair in them? Do I choose the ones that don’t? And it’s not that I wanted to hide my disability, it’s not that I’m ashamed of who I am although it took a long time to get to that place but I wondered would that be an immediate rejection, you know an immediate swipe left I think it is on the app, or would it bring out all the creepers, or would it help me weed out the people who just weren’t worth my time? I think you and I talked about this a lot when I first ventured into online dating.

Kyle: Yeah, you did. I think you ran into your fair share of all of those people that you just listed that you don’t want to run into, you ran into every single one of them. But, what was your experience like? Because your disability is different from mine, you sit down, and I don’t and so you don’t have the option to hide it. All you have the option to do is not explicitly say it which is one less thing than I have. So, what decision was it and how did you get there? Because I actually don’t know that.

Emily: Both really important questions, but so complicated because I actually ended up conducting a little personal experiment and on a couple of the apps I put very obviously that I use a wheelchair, on a couple of them I held back about it and then my personal favorite come on my OkCupid profile I amused myself by making little hints throughout the profile that use a wheelchair. So one of the questions is “what are six things that you can’t live without?” so one of my six things was wheels and my profile name was Emily rolls with something number or something or other so don’t you creepers go try to look me up now– no my profile is disabled– but I waited to see if anyone would catch on to it and that went differently on all of the different apps and sites that I tried and it was quite the ride… literally, a ride, a wheelchair ride.

Kyle: What was your most successful version of yourself?

Emily: I don’t know what that says about society and disability, but I had the best luck with not disclosing right away and telling people after I felt like I was a little bit more comfortable with them. And then from there, gauging their reaction. I mean, on some of the apps where was blatantly obvious that I was a wheelchair user, it brought out all the people that I wish I never had to deal with, the scum of the dating app world, where one person literally said “sorry, it’s a deal-breaker, bye” and then blocked me on the app. And another person thought it would be a lot of fun to have a conversation about how my help with this was very attractive to him.

Kyle: I just want to stop you and ask you something about what you said though. You said that for someone it was a deal-breaker. I want to talk about that I think that’s very important. I don’t find wheelchairs to be a deal-breaker. I would be a very bad disabled person if I did. But,

everyone has their preferences and everyone is also fully free to agree or disagree with those preferences and that’s just the way people are. Do you think, it would have been better or worse if he told you first that he knew right from the get-go that it would be a deal-breaker or do you think it would have gone differently had he gotten to know you and sort of… you’d be the reason why the deal-breaker with no longer be a deal-breaker?

Emily: You and I had this conversation off the record of a while ago when I was one upset about being told that wheelchair was a deal-breaker and I’ve since had a lot of time to think about it. And, I’m leaning towards it was more helpful to be told that it was a deal-breaker because as a painful as that was, it ruled him out. Because I don’t feel that my job is to convince someone why I’m worth dating. If they’re willing to give me a chance and if I need to convince them that they should overlook my disability, that’s not what I want because I want someone who acknowledges my disability is part of who I am but that they accepted anyway.

Kyle: I agree with most of that.

Emily: With most of it? What do you mean?

Kyle: The only part I disagree with this that I wouldn’t call my disability part of myself, but we can talk about identity in a future episode. But as far as dating goes, I think that disclosure is one of those things that I mentioned the beginning the able people just don’t have to deal with, or rather I should say non-disabled people don’t have to deal with. But we do and as you can see through Emily’s series of anecdotes that it does have a profound impact on the people that you attract or not. but let’s move a little forward, let’s say that you have a tablet yourself in the dating world and you have a series of suitors to choose from and now you’re on a date. And, your meeting somebody for the first time, and that somebody isn’t disabled, but you are. Now what? You my personal experience, where my disability is sort of invisible until it’s not, by the time it comes up the person I’m out of the day with generally either already knows or realizes in real life that it’s not as big a deal as they had previously thought, but I imagine that that’s a little bit different for you given that your disability is metaphorically attached to you.

Emily: Yeah, I think another reason why I ended up mentioning disability before any prospect of meeting a person came up was because I wouldn’t want someone to show up on what is essentially a blind date and then it end up being like “oh, surprise! Here’s the thing that I forgot to tell you about me that’s blatantly obvious”, and so I don’t feel that I need to show up on a date and say “surprise, I use a wheelchair!”, so that’s why disclosure was important to me. And also, it gave me a chance to fell out a person a little bit more when you divulge something about yourself so I made an effort to… [Kyle interrupts]: You laid your cards out on the table.

Emily: Yeah because it makes it a little bit easier when you’re meeting someone for the first time.

Kyle: I don’t know I mean I don’t have that problem. That’s a problem that within the disability community I don’t have that you do. That just goes to show you guys how different this all is, I mean it this isn’t just “us and you”, “us and within us and within those groups of us and you”. But

let’s take it a step further, let’s say [Emily interrupts: Boy we’re taking a lot of steps further and you still haven’t taken me out to dinner!]

Kyle: well, I mean we are recording an episode I can’t exactly take you out anywhere. so you’ve narrowed your pool of suitors down to 2 or 3 [Emily interrupts: now our listeners think that I have all these suitors]

Kyle: Well, you do don’t you? No, I know we’re both very monogamous people. But, you’ve been on a few dates with a few people and some have worked out and some don’t and you have your little pool of favorites and you’re choosing between one or two and you’re going on one last date for each of them before you make your decision as Long Island’s hottest Bachelorette. And you come across during your date a situation that isn’t wholly accessible, and suddenly you and your date feel awkward because even though you explained your disability to them and they clearly accept you as a person and all that good stuff, this would be their first time experiencing how disability really impacts your daily life. because seeing you roll around in a wheelchair as it affects your daily life is no big deal that’s something you’ve already figured out. I can’t walk therefore I use this thing to move around. But, seeing you navigate an issue in real time could prove jarring to someone who’s never experienced it before, so I guess what I’m asking is what are your experiences with that? they must have happened at some point.

Emily: Well to be totally honest, I didn’t go on a whole heck of a lot of dates from the people that I talked to on different sites and apps because in a lot of cases it didn’t click for reasons other than disability related issues, you know? And then, when you meet someone in person and you start dating them that way then they just know already so they are aware on some level, they know me on some level which is a little bit different then if you’re meeting me because you’re connected with me on the Internet or something like that. but regardless, I’ll give a person some leeway, I mean it’s going to be a deal-breaker if you immediately ask ridiculously inappropriate questions in rapid succession or just generally make me feel uncomfortable or treat me like my disability is some kind of novelty or I’m so adorable, like “ooh look, she’s so cute, I’m gonna pat her on the head!” but people get leeway from me because I don’t think that you can understand everything about a person just from meeting a couple times regardless.

Kyle: No of course not. So you do give them a little bit of slack?

Emily: Yeah and even though your disability is not visible in the same way that mine is I mean don’t you also have to have the conversations with the people you’re dating at some point about what you can and cannot do or how your disability does it doesn’t affect you?

Kyle: Yes, but it’s very very quick and painless. So let me talk about myself, I’ve sort of been interviewing you this whole time and that wasn’t intentional, but I have only ever dated one able- bodied person. And that wasn’t by choice, it wasn’t like I was looking for one or the other, it was just that most people I know where disabled so most of the people I’ve dated are also disabled, you know how it goes. But, with that one person it just sort of came up organically. I think we were talking about swimming or bike riding or some other mundane nonsense I can’t do, and I was just like “oh, I can’t do it”, and she said “well, I’ll teach you” and I was like “no, no you won’t. You can’t, I promise.” And she asked why and I was like “oh, ’cause I have CP” and

she’s like “no you don’t, I know what that is, there’s no way you have that, you’re too–I’ve seen you.” and I was like “no, I know you know what it is, I know you’ve probably heard of it before, but I do have it and I have a very mild case of it, so I don’t ‘look like CP’ so to speak.” I would actually find out later that most cases where people have CP do in fact look like me and are as mild as me most cases are, but I didn’t know that at the time so it was a bit of a revelation for her, but at the same time at that point she had already known me and knew that it was nothing. It was nothing. We didn’t do things that I couldn’t do. That was just that. There were a handful of times where my disability would come up like I would get tired before she would when we would walk somewhere or walking downstairs or something, and for some reason she really liked to tie my shoes, because she never understood that I could bend down without trouble I guess when I bent down it looked funny.

Emily: What?!

Kyle: Yeah I swear to god. It wasn’t out of pity, I guess I just looked like I was in pain when I bent over to tie my shoes.

Emily: I’ve seen you tie your shoes, you do it on the floor!

Kyle: I know.

Emily: Very interesting fun fact I just learned.

Kyle: No but that was just her thing, that was just her way of helping. I mean, I’m not giving her enough credit she help whenever I ask him whenever she felt like she could, and it was always well-intentioned and deserved. But, I guess what I’m trying to get at is that’s because this person knew me and when she learned I had CP some of the first thing she did was brush it off like it was a non-issue because it was, and only became concerned about it when it became an issue at which point she was more than willing to learn everything she could do in that moment to make my life easier. So really, I only had to mention it once and everything from there on was a learning experience that because she already liked me, was more than willing and happy to learn.

Emily: I think that you’ve definitely had a much easier experience than I have in that sense.

Kyle: Yeah.

Emily: But also, it’s so much different when you meet someone in person for the first time instead of meeting someone online and then meeting them in person Kama there’s less of a chance for you to premeditate how you’re going to handle questions about your disability until for me when I was talking to someone online I would say “oh, you can ask me any questions you want and I hope that it’s not a deal-breaker and blah blah blah”, and I was almost apologetic for myself and who I am, but in person I’m a little bit more [emphatically] “HI, I’M EMILY, AND I’M IN A WHEELCHAIR AND YOU’RE GONNA DEAL WITH IT.” So it’s so interesting how things go so differently for me,whereas for you it’s mostly a non-issue, for me I see it come up in even little things like “oh hey, did you make sure that the restaurant that we’re gonna go to is

wheelchair accessible?” and I feel so awkward saying that when you’re trying to plan a date and trying to be all cute but it is part of my reality.

Kyle: yeah, but after a while you don’t have to ask that anymore. I mean, the person will learn to know you. I mean, you might out of habit.

Emily: Yeah, I hope.

Kyle: but to your point, even when you date within disability, like the girl I’m dating now has CP like me but there are things that you just have to learn no matter who it is. You have to learn about your partner and you have to learn about what they need, if it’s disablity or not, and when I–not so much with my current girlfriend–but when I’ve dated people with CP before, there have been many different ways that CP has shown itself that I had to learn about them that I couldn’t believe that they went through because I didn’t, and vice versa.so when it comes to dating and disability, I think communication isreally just the best part, or at least the most important part. It makes things easy, whether or not your partner is disabled.

Emily: yeah, all dating is about learning about who you’re with, and so for me right now with the person that I’m dating as much as there’s a learning curve because I’m trying to explain different things about my disability to him because he doesn’t have a disability, there’s a learning curve for me about him and that’s just a normal part of dating and so I think in a way this transitions over to the other topic that we really wanted to focus on which is how dating and sex with a disability is not really a this overly complex and incredibly difficult thing that everyone seems to think it is. I think we’re always put on this spectrum where we are either infants who don’t have sex or we are hyper-sexual and fetishized.

Kyle: but really most of us exist in between. I want to say all of us, the reason I said most of us is because some of us are asexual, but really there are no more of us that are asexual then the rest of the general population so it’s safe enough to say “all”, because we’re just like everyone else and I think that that sort of an overarching theme of the show but things like this are things that are sort of important to talk about, so in regards to sex, I have CP. That means that the muscles in my legs are ridiculous and just do what they feel like most of the time, and I pretend like I can walk by constantly falling forward and relying on forward momentum to propel my body forward. [Emily laughs] but that’s not how normal people walk. I promise. And so, as you can imagine, when the time for that comes, it’s hilarious. There’s no other way to describe it. It’s really funny, and if it wasn’t pornographic I’d say that you should all see it, but really it’s a freak show, use your imagination it’s exactly what you think it is. [Emily laughs]

Emily: Yeah, we’ll save the detailed descriptions but needless to say, and I think it’s fair to say this for both of us that our bodies do work in different ways and so when sex comes up it is a matter of figuring out how your body works and how your body works in tandem with your partner and again that’s the same for anybody, disability or not. Maybe disability and a few extra challenges, I mean I know it definitely does in my case. [Kyle interrupts: Yeah, it does] But it’s a matter of being creative.

Kyle: Yeah, and how do you fix that? You just have more of it, right? So it’s a good problem to have if you’re with somebody who’s willing to make it work with you.like you said, I really don’t think it’s too much different, but I do think that where it is different is not the act itself, but I think that when you are disabled and also if your partner is disabled as in my case, there is this extra level of patience that you have to have. Because, you know,if you’re dating someone able- bodied they have to be patient with you, but if you’re dating someone with a disability, then you have to each be patient with each other.not to say that able-bodied people don’t also have to be patient with each other, but there is this certain extra.disabled people don’t have those stereotypical movie sex scenes, I mean no one does, but able-bodied people can pretend to act when out every once in awhile, we can’t. And, it takes time and it takes effort and it takes patience, and the only way to do it is to do it, and like I said before if you are with a partner who’s willing to learn with you it’s a really good problem to have, with the most excellent solution in the world. But, there’s something about getting there that feels like a bit of an achievement, and when you do it feels really good. The journey there is slightly more steep for people like us I imagine.

Emily: but that’s also not to say that it’s so massively great and inspiring achievement when people who are disabled have sex all that is to say is that you climbed over a few extra challenges–winky face–and figured it out.

Kyle: No, no no no… I’m actually glad you said that, I didn’t want to make it sound like it’s this big deal because that’s the point, it’s not. It’s just a slightly bigger deal than when able-bodied people do it.for example if your two able-bodied people I’m willing to bet that when you do it you don’t look at your partner and go “huh”. But we do! And it’s just one of those things, and it sort of brings you closer to your partner. Not in a romantic way, but more in a way that says “I’ve extended this effort to figure you out, and you’ve done the same for me, it really–in complete seriousness–it shows character that for an abled person, you’d need to do something more, I guess I’d say a bigger deal than just have sex. Much like making a dating profile and setting your profile picture to you in a wheelchair, when you have sex with a disabled person, whether or not you are one, they have a dozen dials going on in their head “gauging” how you’re doing, not dealing with the actual act but how you’re handling it. Not because it’s different, but because it can be different. And when it becomes different, how you approach that, and it doesn’t take much effort to do it right, in fact I would say it takes more effort to screw it up, but much like the unwanted help episode, the best thing I think you can do is ask if such a thing happens.

Emily: I totally agree with you. And, it makes for some funny memories! “Oh, not here, there. Oh, don’t do that, do this, oh oh ow, nope, that’s not working, you know?”

Kyle: Yeah, but that’s my point, there’s abled couples who don’t have that! I mean I’m sure if they’re trying something new they might run into that but we have it from the get-go. There’s no running away from it, it just happens. It’s not a roadblock but it is a hurdle that you just have to overcome, and it’s a pretty good feeling when you’re with someone that’s willing to do it with you. Metaphorically and literally. [Emily laughs] No I’m serious! Because it sort of solidifies whatever relationship you have with them, and also you just had sex. It’s a win-win!

Emily: Totally winning situation, no matter how you look at it. And also the act of having sex is- -I mean, I hate to sound so clinical–but it is a good way to gauge how your partner feels about disability and about your body in general. Also, a way to gauge not their open-mindedness so much as their willingness to be flexible, and again literally and figuratively, but what I really mean there is not necessarily defining sex in a traditional sense. So, people think sex equals intercourse and sure, yes, but there are so many other forms of self-expression and sexual expression and when it comes to having a disability,we often refer to sex in ways that might mean something different than what people traditionally consider. But that doesn’t make it any less intimate or important or meaningful.

Kyle: Yeah, I mean there’s a reason why they call it oral sex and not oral grocery shopping, right? That’s sort of what you’re saying. [Emily laughs]

Emily: I meeeean… yes?

Kyle: I have a confession. When I say that word I do generally mean intercourse but obviously there’s many ways you can define the word “sex”, and you should define it whatever you feel most comfortable with that is also within your ability level. and, sometimes it can be whatever it is you need it to be, man. as long as it’s consensual and you’re both happy, do whatever you want.

Emily: Consensual is a big one.

Kyle: I feel like we don’t have to say that but I feel like we probably should.

Emily: Yeah, no I think it’s important. Especially because when it comes to disability, because there is a higher rate of rape and sexual abuse unfortunately.

Kyle: Yeah, very unfortunately. The most unfortunately.

Emily: But our goal is really to focus on debunking the taboo around dating and sex and disability, and as far as I’m concerned, most of my dating and sex stories are just about as ridiculous as anyone else’s I’ve heard, disabled or not.

Kyle: That’s the point, I mean the only thing being disabled does to sex make it funnier, and slightly more painful. But other than that–I’m saying that facetiously–but it’s really not that big a deal and I think that that’s the point we’re both trying to make is that although it adds its own set of hurdles, they’re not that hard to overcome and if you have a partner that’s willing to overcome them with you then they’re hardly hurdles at all. And, you’re both better in the long run for it, and you the more you practice, the better at it you’ll be. Both in [sic] a growing standpoint and a physical standpoint.

Emily: Oh it’s totally trial and error. 100% just making mistakes and failing miserably and getting back up and doing it again the next day. And it’s harder as someone who is disabled because people are… [Kyle interrupts: We don’t move the same]

Emily: …Yeah and people are judgemental too, you really can’t escape that, there’s absolutely no escaping it. But every once in awhile, you find someone who will accept that you have a disability whether it’s visible or not and you’ll find someone who might see a scar on your body from surgery that people don’t normally see or who might realize the ways you which you cannot do things that they always expected a partner to be able to do, and in those moments you have to find the happy medium and the in between and just accept each other as you are. And it’s so cheesy–it’s SO cheesy–but it’s so true that as much as disability and dating comes with its own extra set of struggles, it’s really so much like anyone else.

Kyle: Yeah, I mean I think if there’s one thing that we want to have our listeners take away is that sex, dating and disability is 90% sex and dating and 10% disability. And that 10% is sitting right there on top of all the other nonsense that comes with it and… [Emily interrupts]: I’m sorry but there have been so many innuendos I just could not keep my mouth shut anymore.

Kyle: Go on.

Emily: On top. Comes with it.

Kyle: There you go. Are you happy?

Emily: Are we allowed [to say that?]

Kyle: Yeah, we’re not allowed to curse but were allowed to say anything else.

Emily: Great because I’ve been waiting to say that this whole episode!

Kyle: Cool. And as much as it is “a thing”, it is not “a thing”. The only people who will ever see how much of “a thing” it is is you and your partner who will, if you are a good match, figure it out and it’s the best practice of something you’ll ever deal with.

Emily: And, it isn’t nobody else’s place to judge your relationship, no one’s. It is your business, OR, lack of relationship if you are asexual. If you are not in a relationship. [Kyle interrupts]: Well then, don’t listen to this episode!

Emily: No seriously! I think it’s totally fair for you to talk about it!

Kyle: Yeah, I was just being facetious.

Emily: No I know, you just like to be silly.

Kyle: Mhm.

Emily: But it’s definitely difficult because often people will judge me and assume that because I use a wheelchair I should be dating someone who uses a wheelchair, or how inspirational it is that somebody able-bodied would date me. And, as far as I’m concerned, I’m going to date you I’m going to date. I mean, someone said to me when I was with my ex who used a wheelchair,

they saw us sitting in front of the Lincoln Memorial, and I had my head on his shoulder, and they came up and tapped us on our shoulders and said “I just want you to know that you are cavity- inducingly cute, and you just made my night!” And I was so irritated by that because plenty of other people were getting all snuggly snuggly in front of Abe Lincoln and no one else got that comment, you know. [Kyle interrupts]: Yeah there’s plenty of people way cuter than you guys!

Emily: Seriously! We were not that adorable… we were kind of adorable.

Kyle: To your point though, there’s a certain–you’ve said it off the record to me enough times. Not that you hope or wish–but that it was easier in some way or another to date someone who uses a wheelchair because there are things that they just get, and I always say to you that it doesn’t matter. That’s more of a thing of timing, because a person who uses a wheelchair from birth we’ll just know because they’ve had their whole life to know. But somebody who doesn’t have to spend some amount of time before they know it. But once they know, I would say that they would know as much. I will say that my current girlfriend has CP just like me but that’s not why I picked her. And the only benefit that that by itself gets me is that I don’t have to explain the weird pains I feel sometimes. But that’s it. There’s very little benefit from seeking out a partner who has your set of disabilities. If that’s what you want to do, then go ahead but I promise you you’re not going to get much out of it if that’s the only thing you’re looking for.

Emily: I agree, I agree. And I think before we get too cheesy that we have to start playing a love song or something…

Kyle: Let’s not.

Emily: We should probably wrap up this episode, and you know, speaking of wrapping things up…

Kyle: Yes, practice safe sex, kids. Please.

Emily: So glad that we had that PSA. And on that note, once again: I’m Emily Ladau

Kyle: I’m Kyle Khachadurian

Emily: And you just sat through another episode of The Accessible Stall!

Kyle: Bye guys.

Emily: Bye, thanks for listening!

Download a .pdf of this transcript by clicking here.

Episode 002: Help

TRANSCRIPT

Emily: Hi I’m Emily Ladau.

Kyle: And I’m Kyle Khachadurian.

Emily: And you’re listening to The Accessible Stall. So what are we gonna talk about today, Kyle?

Kyle: I think today we should focus on instances of unwanted help.

Emily: Oh boy, I can go on and on about that topic.

Kyle: I think everyone with a disability can, it’s a fairly ubiquitous thing in our world.

Emily: So, we should probably decide what we mean by unwanted help.

Kyle: Yeah, unwanted help is sort of like imagine if you will–you see an elderly person walking across the street–and in the stereotypical format, the way it should go is: you ask them if they want help to cross the street, they say yes, and then you help them. *Now* imagine if the elderly person says “no”, or “maybe not today” and you insist on helping them anyway because you think that you know that the elderly person needs more help than they’re letting on, and they’re just saying “no” for their pride, or something. that is sort of what people with disabilities go through on a fairly frequent basis.

Emily: So I guess a comparison would be if I was pushing my wheelchair across the street and someone said “hey, you look like you might need some help, can I help you out?” And I say “no thank you!” or I say “yes please!” and they go either on their merry way, or they help me cross the street. Alternatively, I’ve had people come up behind me and grab my wheelchair from the back unexpectedly sometimes and start jolting me forward, without my permission, and claim that it’s because they’re trying to help.

Kyle: Yeah and I guess the main focus of this episode isn’t that help is bad because it isn’t. Most of the time, help is exactly what it is, but the point of this is that we tend to know when we need help more than you do. And sometimes, the reasons that we say no to unwanted help isn’t because we’re too prideful, it’s because your idea of help may actually be doing more harm than good.

Emily: And sometimes it’s a little bit embarrassing too. because people will throw themselves at you and automatically offer help without assuming that you might be totally fine figuring things out on your own, like our little adventure in the movie theater a couple weeks ago

Kyle: Yes, you should tell that story.

Emily: Yeah so Kyle and I and our friend Meg went to go see a movie and we were minding your own business, waiting on the line, and  out of nowhere–literally out of nowhere–a movie theater worker comes up behind me and says [emphatically] “come with me I’m going to show you where to go!” and we were just like “where did he come from, and why is he yelling in front of everyone?” And then when I said “oh, I’m good I’m going to wait here with my friends thank you”, he said [emphatically] “ok, I  was just trying to help” and  backed off with this sort of offended puppy dog look on his face and so it raised a question in my mind “should I be feeling guilty for rejecting an offer of help, or should I feel like I said no because I didn’t need it and that’s that.”

Kyle: It’s one of those weird social situations right? Because  the other person in this scenario really thought they were doing you a favor and they probably were on some level, and it puts the pressure on you because when you say no for whatever reason you have to say no, to them it makes you look like the bad guy. And it’s just bad all around because now you’ve left a sour taste in his mouth, he’s probably never going to offer help again, and everyone walks away slightly worse off. And it could have easily been avoided if the person just came up to you guys and asked you if you needed help.

Emily:  I will counter that with sometimes I’m literally just sitting there doing nothing, and some will approach me and say “do you need help?”, but I won’t be making any indication that I’m in any sort of distress,sometimes I’m just sitting there playing around on my phone, or just staring off into space waiting for someone, but I think “wheelchair” almost calls out “help me, help me!” and I struggle because I don’t want people to think that I’m ungrateful or that I find them unkind, because I know that someone who’s trying to help me is not a malicious person, but I also don’t want to automatically appear helpless or just be somebody’s good deed for the day, you know?

Kyle: Yeah it’s a fine line. I feel like for the most part, when you refuse help some people just shrug their shoulders and go about their day, but there’s always a small percentage of people that they almost get offended–no–they DO get offended, they get legitimately offended, you know “how dare this poor disabled person refuse the help of me?” and I’m not a fan. I don’t even understand it. I feel like as a person if somebody says they don’t need my help it’s probably for a good reason.

Emily: Have you ever had a situation similar to mine? Because I know that our disabilities present themselves differently so for me the wheelchair is a very visible symbol, but for you I don’t think people pick up on it quite as quickly that you have a disability.

Kyle: You know it’s funny, they don’t. But, what does happen is when they see it they’re more than happy to help if I’m having a particularly bad day–and I don’t know what it is, right? Because I don’t notice it– but I know that it’s not completely invisible and I know that if somebody sees it every single time they’ve been more than willing to offer real, actually help then I actually did need, so I can’t say that that’s a bad thing. but, what I will say is that there have been– and I can’t think of specifics, but I’m sure that this scenario has happened in my life, where for example,  I’m leaning on a closed door and somebody will open it thinking that that’s what I’m trying to do and it will totally throw me off balance and then I will fall and hurt myself. That would be the closest thing that I have to be analogous to what you said. even then though– and this is the screwed up part– because even then, in the case where I’ve injured myself,  I can see completely what they were trying to do and I can see the goodness in their heart and it makes me feel bad. on the other hand though, I’ve  also had situations where I’ve tripped and fallen on the street and people have literally walked right over me, and as much as you think that makes me angry, it really doesn’t because I don’t know if I would help somebody who just tripped, but I can’t.  I don’t do it because I can’t, I don’t do it because I’m a mean person, but in my head everyone who stepped over me isn’t mean either, they’re just in a hurry or couldn’t do it for whatever reason either and so I guess what I’m saying is that it’s definitely more difficult when the situation presents itself that they’re usually right,  which is the opposite of you,  and I get that,  but I guess that’s the trade-off of not sitting down in some way or another.

Emily: It’s funny because sometimes if someone ignore the fact that I clearly appear to need help Kama then I get frustrated, or someone sees me approaching a door and doesn’t bother to hold it for me or lets it close on me, then I say “oh really nice, you just let the the door slam on the girl in the wheelchair”, but then sometimes I think to myself about the people who literally run all the way in front of me it cut me off just so they can grab the door for me and I’m like “oh man this person is trying to give me all the special treatment just because I’m in a wheelchair, leave me alone I can open my own door”, so sometimes in my own head that people can’t win for losing with me.

Kyle:  Yeah, but in that particular case of opening doors, I don’t know about you,  but I hold doors open for everyone and I can honestly say that it’s not an act of chivalry or feeling bad for the disabled person, it’s just because I was raised in a world where holding the door open for somebody behind you or even in front of you in some cases is the right thing to do. if they are immediately behind you, you hold the door open you let them go first. If they’re a little farther, you pulled the door open and they come in after you. It’s just what I do. Whether or not you’re sitting down, or a woman, or any other weird rule to that situation does not apply. 100% is not relevant to me. I actually will get really annoyed when somebody doesn’t hold the door open for me, because most people I know would, I think it’s rude, I think it’s right up there with somebody not saying “excuse me”, or “please” or “thank you”, it’s a matter of manners more than anything else.

Emily: Dude I’m going to argue with you for a second because you let doors close on me all the time.

Kyle: Yes, but that’s because I hate you. [laughter] No, it’s because I don’t know whether or not you “have it”, and that’s a strange wheelchair situation. Because you don’t hold the door open with your hands like everybody else, you hold the door open with the machine that you’re attached to, and that’s fine, but it’s hard to gauge whether or not you’re fully in, and I’m not 100% at guessing when that is yet, and sometimes the doors get heavier on the way in, unfortunately.

Emily: Likely excuse. No, I understand what you’re saying. I think about it, and I think you know me, so it’s a lot different and I’m also willing to yell after you that you should be nicer and hold the door for me but I’m not going to say that to a complete stranger. But sometimes, I’ll be out in public with more than one person who has a visible disability, and then nobody will bother to hold the door for us or help us and at that point, I just think “really? C’mon, an act of kindness wouldn’t kill you at this point.”and so, I’m trying to find a balance in my head between being grateful for help but not rejecting help but understanding why people offer to help, it’s just this big jumble in my head.

Kyle:  I don’t think there’s a fine line between those two things though. I think that most of the time, the situation can honestly be remedied by asked me if you need help, I understand that a door is a weird situation because it’s just a thing that either you do or don’t do, but in other situations if you can just ask the person if they need help then the situation will resolve itself. Because either you do and you’re going to tell the person how to help you and the person that will, ideally just, say “oh ok” and walk away.

Emily: Yeah that’s another thing,when you ask someone, it opens up the opportunity for them to explain what they need so that you can actually be helpful, and that’s huge because sometimes for example: when I’m traveling on an airplane and the people who help me get on the plane if I’m not with my family, it seems to be quite the circus production. And they sometimes without even asking me will grab me off of the aisle chat that they use to help me get into the plane, it’ll really hurt. So I’ve taken to saying before anyone grabs me “this is what I need, this is how I need you to help me” or “don’t touch me there” or “don’t grab me here” and I feel like I have to be very firm because a lot of times not disabled people treat me as though they know better what will be most helpful for me.

Kyle: Yep. Has there ever been a case where they’ve been right? has there ever been a case where they did in fact know better than you? That you misread their intention, and ended up doing something that you didn’t realize that they were trying to do and it ended up being better?

Emily: I can honestly say nothing that I can think of. and I don’t want to tell her I’m just full of myself, or think that I am the all-knowing power, but I also just know what’s going to hurt what my body can do and my body cannot do, so I guess I’m also able to very firmly able to speak up for myself. but, there’s a whole other set of issues, let’s say somebody uses an assistive device for communication, or someone has a speech impediment and they’re trying to verbalize the assistance that they need but people are patient enough to sit there take a minute and listen to what that person is trying to convey.

Kyle:  I mean that’s just basic disability etiquette,  and that should actually be another episode [Emily interjects: Stay tuned!] but I agree. especially in cases where you’re communicating with somebody who’s nonverbal or at least a verbal in a way that isn’t through their mouth. I’ve never seen somebody run out of patience quicker than when dealing with somebody like that unfortunately. Generally speaking, what they’ll do is they’ll speak to the nearest person that looks like they can speak, which is just awful. It is the worst thing ever.

Emily: yeah so unwanted help ties into a big phrase disabled people will throw around and people may not understand what it means but “presuming competence”.

Kyle: Oh yeah you should probably tell everybody what that means first.

Emily: Yeah well, it’s funny because the words standing alone, I mean anyone would I think catch on to the meaning of it but in regard to disability, it means [emphatically] not assuming someone is incapable of thinking for themselves, or advocating for themselves, or doing something for themselves, and let that person take charge and show you what they can and cannot do.so often, that seems to be a foreign concept to people. even when dealing with someone who is able to clearly verbalize what they need, it’s like the wheelchair suddenly throws everything off.

Kyle: I need to give these people a little bit of a bone though, I mean sometimes, it’s their first time. And, that’s ok. If that’s the case for you then nobody is going to dislike you or feel ungrateful for the help that you tried to give , and ended up not. Generally, at least for me, if I receive some form of unwanted help,I can see through it enough to know that the person honestly tried. In my case more often than not what happens if it doesn’t do any good. in Emily’s case it sounds like the worst thing that can happen is it does harm.For me it’s a zero-sum, but for her it’s a net loss, so it’s a little different I suppose.

Emily: Well what if you were walking down the stairs? Or down a ramp, and someone tried to help you? Would that be useful or would it throw you off balance?

Kyle: It depends entirely on what’s going on. If I’m running down the stairs I do need help, but there’s nothing anyone can do to help me. I used to have a co-worker, that once she knew about this little thing that I sometimes need, that she would just do it. and the first time she did it Kama it was before I explicitly said that I needed it, so she just sort of picked it up in passing, which is great I suppose. But at the same time I didn’t explicitly say it so I didn’t know how to feel about it but I couldn’t really be too mad because she was absolutely right. what she did was she noticed that there was a large step for talking like a 4-inch step between the step and the ground,  and she hopped off of it and gave me a shoulder to lean on, which I didn’t need. I didn’t need that, that’s a gap that I can cross without any issue whatsoever, but it helps if I have a shoulder. It makes it that much more easy [sic]. And I remember just being sort of confused, like “oh how did you know I needed that?” and what she said was that she just assumed that it would make sense that I would need that, and I really–I don’t want to say I wanted to be upset about it because that sounds like I’m being pretentious, but I wanted to feel like “oh, this is somebody assuming I needed help when I might not have”, but in reality what it was was someone who was around me enough to know little intricacies of my disability without having to ask me–although I would have been happy to talk about them, by just picking up little things that she’s noticed about me. And I think that that’s great. I don’t like assumption, I don’t mind presumption. When you have a reason to do what you’re doing, rather than blindly following this idea of “help”–if your help is catered to that specific person rather than “somebody in a wheelchair, they must need help”, I think you’ll go farther. I mean I think asking is the best way to go, but I think if you’re too shy to ask, but not too shy to help, the best thing you can do is sort of survey the situation a little bit and see what makes sense from a purely common sense perspective, because sometimes you might be right.

Emily: Or maybe a little bit more instinctual. Which I think sometimes comes with having any sort of relationship with a person.

Kyle: Yeah but I mean you can also just put yourself–if they switched places, if the person trying to help you was sitting in your wheelchair and you were trying to help them–what would they want you to do? This is what the person doesn’t tend to think about, but if you ask them to–I mean if you’re asking them to you’re asking for a thought exercise so you wouldn’t actually do that, but if you could get them to that point where they would consider “what would the situation be like were they the ones sitting down”, I feel like more often then not, they’d be like “oh! Yeah! That was ridiculous of me, I should have done this.”

Emily: So a little bit of “put yourself in their shoes for a second”, and try to figure out how you might respond if the help was thrust upon you in that way?

Kyle: Yeah, but that’s not even wheelchair or disability specific, if you see somebody struggling with a lot of heavy groceries and you wanna help them, what’s the best way to do it? Probably the best way to do it is to first ask them if they need and then hold one of their bags, or if it’s a big bag hold underneath one side or something, it doesn’t have to be about disability, and yet somehow, when you are disabled and visibly disabled, because it doesn’t happen to *me* so often, it’s just a giant “help me” flag that you can’t get rid of. And it doesn’t come from a place of being ungrateful, it generally stems from a place of pure frustration *because* we realize you’re so helpful, without *being* helpful, or rather that because we realize that your intent is *so good* and so well placed, but your execution of that intent is so off.

Emily: I’m also thinking as you’re talking about the different types of help, and you’re talking about the intent and execution, but sometimes people are helpful under the guise of condescension. Or condescending under the guise of helpfulness rather

Kyle: Which is it? Because I’d say that both of those things are true

Emily: I think both of them exist. But I think that what I’m getting at right now is condescending under the guise of helpfulness. So, I’ll get into an elevator and I have literally had people say ” the buttons right there sweetie” and I’m like “I-I see that, thank you so much, really appreciate that”.

Kyle: I’ve learned to laugh at that.  Because what can you do? That person to me is too far gone. If that person’s idea of a good deed is helping somebody in a wheelchair press a button, they’re never gonna sit there and learn why what they did was sort of screwy.  They’re just not. They’re going to go home and think about you once over dinner and then never again and that’s that, and just like you you’re going to tell the story on the podcast and you’re never going to think about it again. Until it comes up again.

Emily: I probably think about it more than the average person because I’m always encountering situations where I’m navigating the waters of help.but at the same time, I think you’re right I have to laugh it off and have to let it roll off my shoulders and just sort of write a few people off as a lost cause, but hope that maybe they’ll think about what they did.

Kyle:  this is going to be someone of an unpopular opinion, but I will say even in that case I get it, I’d never do it because I know better and I think everyone should know better, but I understand that not everyone does know better and I understand that even in a case like that, they really thought they were helping. Was it condescending? Absolutely.  was it wrong? Absolutely. Did they think they were doing the right thing? Yeah. And that’s the worst part. I would honestly rather somebody be outwardly condescending and tell me that they hate me, or something like that [Emily laughs]

Emily: I don’t think that’s condescending, that’s just rude!

Kyle: Well whatever! I’d rather have somebody be overtly condescending for disability related reasons than hide hide it under the guise of help. But I think that when they hide it under the guise of help though, they don’t really realize what they’re doing is condescending. And I’m not so cynical as to not know that, but then the problem becomes, where do you start? It’s such a weird thing because it’s weird for everybody, right? They think they’re doing the right thing, you know they’re doing something good but for all the wrong reasons… you know–I was in a McDonald’s once with my friend who has no arms and somebody took time out of their day to show us how to open a door. And, yeah I mean, great, but what he failed to realize is we were already in the McDonald’s, we know how doors work.

Emily: I realize the people listening can’t see my face, but boy did my jaw just drop to the floor [Emily laughs]

Kyle: It’s true! And what do you do? What we did was we screws with him. Like “oh thank you so much! We really appreciated it!” [Emily laughs] …which is the exact wrong thing to do if you’re actually trying to teach somebody something. But in a case like that, what else is there to do?I ask as an open question, because you have to have fun sometimes not everything has to be a teachable moment.

Emily: that’s a really good point, because…

Kyle: Sorry, I don’t mean to interrupt you

Emily: No that’s ok!

Kyle: but to amend myself,I think as disabled people we should take advantage of our teachable moments, which is also somewhat of an unpopular opinion, but not everything has to be, such as how to use a door.

Emily: no, I think that unwanted help or wanted help and teachable moments really do go together because a lot of times I want to explain why what someone’s doing is maybe not the best thing, or maybe they can go about it a little bit differently, but then I end up realizing that the moment has passed, I was a little bit too shell-shocked to even go about having a teachable moment. So I wish that I could be better at doing it on the spot, but sometimes the only thing that I can do is go with it because I’m just so stressed by it.

Kyle: But also because you have stuff to do.

Emily: Right? Exactly, you’re going somewhere.

Kyle: There’s no definitive–like, somebody walks out of that situation with their pride wounded. Sometimes you need that, sometimes you need to have your pride bruised a little bit to learn something, but I will never say that help is bad. I will never say that unwanted help is bad, because unwanted help is still help. The bad comes from the lack of knowledge based on how to help, or the insistence that your way is the way to help and the only way to help and the definitive way to solve whatever conundrum I find myself in. Genuine help is always appreciated, and that’s not a disability issue either, everyone loves help sometimes.

Emily: Yeah I’ll give a perfect example that’s completely not at all disability related but just shows how sometimes unwanted or unrequested help can actually be a good thing. I was in a home improvement store with my family last weekend and my dad was carrying a really heavy box, and all of a sudden we passed by this couple that had a wagon but there were only a few things in the front of the wagon, so out of nowhere the woman looks at my dad and says “you clearly need this more than I do, here.”, and starts taking the box out of his hands and putting it in her cart, and then taking her stuff out of the cart, and basically relinquishing it to my dad, and was it requested? No. Was my dad totally fine carrying the box? Yes. Does he have any sort of disability or indication that he was struggling? No. But, it was this, I guess random act of kindness that was actually really appreciated and actually restored my faith in humanity and then my mom and dad and I had a lovely little chat with them and we all went on our merry way and felt good about everything. So, that’s a perfect example of how sometimes unrequested or unwanted help can go perfectly well.

Kyle: It all just comes back to assessing the situation and asking. You know? “Hey, need a hand?” would do more than just giving one. Because what am I supposed to do with it, you don’t know me. But if you give me the chance to explain why I might need your help, then you can do a better job at helping me. If you wanna help so bad, then you’d take the extra 30 seconds of your life to learn what the best way it is for you to do that.

Emily: I totally agree.

Kyle: And when you ask if we need it, then it lets us decide, and it isn’t “oh ok, I’m in a wheelchair and you’re in my life now because you think I need help”. It lets us decide whether or not the help is wanted or even necessary, sometimes it might not be. Sometimes it just looks like we’re struggling because… I mean… we know how we look. [Emily laughs] No, it’s true. We know that, to the general public, people with disabilities look like trainwrecks, I mean… this is a secret that we try to keep. But some of us are [both laugh] willing to admit it and I guess that’s sort of where this comes from because, I dunno… just ask man… just ask.

Emily: I think one of the best examples of how to go about asking in the right way, is I was at the movies with, the guy I’m dating and he and I relatively, you know, just starting out in a new relationship and so he’s sort of getting used to my needs as someone who has a disability and he does not have a disability, and I was getting up from the movie theater seat at the end of the movie and it’s a bit of a high jump from the theater seat to my wheelchair seat, but I do it all the time so I’m used to it, but he doesn’t know that. So he just said “can I do anything to help?” and I said “no, I’m good!” and then he just stepped back and let me do my thing, went on talking, didn’t insist that he had to help me and I just thought that was the perfect example of what to do in a situation where you’re not sure if help is required.

Kyle: Yeah. [both laugh] That about covers it.

Emily: Is it safe maybe to leave it at an example of what *to* do, rather than what *not* to do?

Kyle: Absolutely, because you can talk about what not to do for days. There’s so many ways to do it wrong, but the only way to do it right is actually the easiest way too… if you think about it, it’s just to ask.

Emily: Yeah.

Kyle: But, you know, help is always appreciated, we don’t mean to sound ungrateful. If there’s one thing we want to make clear it’s that it’s not the help we don’t enjoy, it’s the assumption that we need it and it’s the assumption that we need it *that* particular way at *that* particular time in *that particular capacity* from *you*.

Emily: Well, let me ask you this. Do you feel like there’s ever a time where you would want to sit there and explain everything? Would you be willing to sit there and explain your needs to every person who ever asks you? Would it get more annoying to you if people ask you constantly “how can I help?” or “do you need help?”

Kyle: No, no.

Emily: So you’d always rather be asked?

Kyle: Mhm. But if you know me then you know how to help. If you don’t, you would ask me. If you’re a stranger and you ask me how can you help or if I need help… if you ask me *if* I need help, my answer if it’s yes, it’s gonna be immediately followed with what you can do. That’s just a thing I do. That doesn’t bother me at all, because if you’re asking me, then that means that you wanna do it. [laughs] So I’m willing to take a sentence to help myself help you help me. [Emily laughs]

Emily: If you followed all that.

Kyle: Yes it could get annoying but it doesn’t happen to me often enough where that *would* get annoying. I understand maybe for you, people would see a wheelchair and assume that you’re incompetent and can’t do anything except breathe and even that’s probably a miracle to them [Emily laughs], so explaining your every need to them I can understand can get completely tedious, but for me I’m always willing to explain myself, because it’s really not that much. It’s usually “hey, can you stand in front of me?” “Hey giant man on the subway, do you mind if I lean on you? All the poles are taken.” And that’s anther thing too, I’m not ashamed to ask for help. Ever.

Emily: You know what, I know we said we were gonna conclude it but I think really quickly I think that’s the best note to end it on, is it is not a source of shame if someone disabled asks for help. That’s not something to be ashamed of. It is okay to be interdependent. It’s not dependant, it’s interdependent.

Kyle: I think that doing the helping, if that happens, generally get it for the most part. If they say no, I would assume if somebody says no to a request for help, it’s more that they’re busy doing something else than they’re a bad person. Maybe that’s cynical of me, but I would assume most people usually are willing to help unless they really can’t, and if they really can’t you probably don’t want *their* help anyway.

Emily: Yeah, so I think we should wrap it up on the positive note of “it is okay to ask for help, it is okay to offer help, consider the ways in which you offer help and be willing to work it out, to take the extra second and make sure that you’re not making any assumptions about the person who you’re offering to help.” And I think on that note, we can wrap up the podcast.

Kyle: Sounds good to me. Next time, we’re gonna talk about sex.

Emily: [laughs] So stay tuned! Because that should be interesting. Or maybe we’ll talk about something else. Kyle wants to talk about sex and disability. [laughs]

Kyle: Or dragons, I don’t know. Alright, see you guys.

Emily: So on that note, we will catch you next time, bye!

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