Emily: Guess what, Kyle?
Kyle: What, Emily?
Emily: We’re on Patreon!
Kyle: What’s that?
Emily: Patreon is where you can be a patron of ‘The Accessible Stall.
Kyle: What does that mean?
Emily: You can simply donate any amount you choose, once per month, to support our work.
Kyle: Really? Like, what does the money go to?
Emily: The money will go to production costs, and transcription, and…
Kyle: Did you say transcription? That’s, like, really important.
Emily: I sure did.
Kyle: My god, we can actually have accessible podcasting things!
Emily: Accessibility on The Accessibility Stall, who knew!
Kyle: Oh my god, that sounds great. Where do I sign up?
Emily: You can go to patreon.com/theaccessiblestall
Kyle: I’m going to go ahead and do that right now.
[music]
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: We’re going to talk about Bodily Autonomy.
Kyle: Cool.
Emily: Yeah, super cool. It’s a thing everyone should have.
Kyle: Yes. End episode, all right.
Emily: Thanks for listening, bye! [chuckles]
Kyle: No, seriously, it is a very important topic that pretty much directly impacts the lives of every person that has a disability on a personal level. I think before we really get into the nitty-gritty of it that it’s best to define what we mean, and what better source for that than Wikipedia, right?
Emily: I’m going to let you read this, because I have not even pulled up the Wikipedia page, so you go right ahead.
Kyle: Yeah, they call it body integrity, but they define it as the inviolability of the physical body and emphasizes the importance of personal autonomy and self-determination of human beings over their own bodies.
Emily: I am nodding like I had a religious experience.
Kyle: Yeah, she is. It’s kinda ridiculous. Anyway… So basically what that is and how it pertains to us as a group of people…
Emily: We should probably start with what prompted this is in the first place —
Kyle: Absolutely.
Emily: — which was an article that caused a bit of hubbub on the disability social medias about the story of a mother who has a son who has cerebral palsy and is autistic, and he has certain behaviors in which he turns violent against himself and begins hitting himself. So the mother took it upon herself to publish a very long article somehow connecting her son’s behaviors to violence, the nature of which is like the Holocaust and ISIS..
Kyle: ISIS… Yeah, it was really ridiculous.
Emily: And on top of that, she also got super deep into giving away personal information about her kid and shared pictures of him with injuries from his behaviors in the middle of his behavior, and the whole thing… I mean not only is it a train wreck of an article and completely overwrote and also super offensive on 20 different levels to…
Kyle: We counted.
Emily: Yeah, we did; every single one… but it’s offensive obviously because you’re connecting the disability of one kid to the violence of the holocaust and that’s just offensive on, like, both directions.
Kyle: I mean even if you take that away, it’s sort of just still not…
Emily: The article just sucks. It sucks! She’s literally just babbling on and on about her child’s personal experiences. And yeah, he’s a young kid, but even so, this points to the larger issue that when you have a disability, chances are your body is not always going to be your own. There’s going to be people objectifying it and exploiting it and talking about it and writing about it and disclosing your personal information when they shouldn’t be, and this Elle article was proof positive that that happened all the time.
Kyle: Yeah, it was literally there in black and white.
Emily: So, clearly I’m all worked up about this article, but the bigger thing that we want to address is the fact that when you’re disabled a lot of times your body is not your own, and your personal space is not respected and your privacy is not respected.
Kyle: I’m actually curious to get your perspective on it more than I’m eager to talk about my own, because you use a wheelchair and I know you think that your wheelchair is an extension of yourself. Right, you do? I don’t want to put words in your mouth, but I believe you do, you’ve told me that before right?
Emily: Oh, yeah for sure.
Kyle: Okay. So basically, if I touch your wheelchair, to you I’m touching you even if it’s not physically attached to you, whatever. But that’s interesting to me because I don’t, and so you’re only touching me when you’re actually physically touching me. So I think that it’s super interesting to have the belief and feeling that your body extends to your mobility and I can totally see why. I mean because you need them to move and be a person, but I just think it’s interesting and I’m really curious to hear how that particular aspect has affected you.
Emily: Well, I have a lot of thoughts on that, but I would first counter with I know you’ve space issues of your own.
Kyle: Oh absolutely. No, I totally do. I’ve got tons of them but I mean-
Emily: And I think that’s largely a sensory thing with you. People touching you in a certain way or in a certain spot, or if you had no warning, I know you’re very sensitive to that.
Kyle: Oh no, absolutely. I’m not saying that you’re like alone in this not liking being touched thing, I really hate it in general as well.
Emily: Yeah, touching you is like you’ve got to earn that right, and I don’t mean that in a weird way.
Kyle: No.
Emily: I mean like…
Kyle: I mean to our listeners it’s literally true. I’m picky.
Emily: Yeah, so and also I feel the urge to clarify that I literary mean any sort of physical touch, so like being in Kyle’s general vicinity.
Kyle: Yup.
Emily: That’s like a trust thing, but I would argue also somewhere in there like a mental or a disability thing, because someone touching you can also really throw you off balance and it’s super dangerous.
Kyle: Yeah, and it’s arguably caused by the disability I have. I mean, you know. Jury is out on whether or not I’m actually on the spectrum, like literally no one knows. I try not to bring that up because I don’t really think that that matters, but the sensory issues that I do have that are documented can be nearly directly attributed to my CP. So, that’s certainly where most of them probably come from.
Emily: Yeah, and I didn’t mean to like to turn your question back on you, but just because I didn’t want people listening to think that it was going to be all me.
Kyle: It’s all good man. Don’t worry.
Emily: Also, I should clarify too that there are multiple types of bodily autonomy that we’re talking about. We’re literary talking about physical touch, but we’re also talking about in relations to the Elle article, which we’ll get to after I answer Kyle’s question about, you know, putting things out there in the world. So it’s physical and it’s metaphysical, is that what I’m looking for?
Kyle: This is going to be a long one folks.
Emily: I don’t know if I was using the right word there, but anyway so to answer your question, I do think of my wheelchair as part of my body because it’s essentially a stand-in for my legs, stand-in, get it. So since it is my means of getting around all the time, it’s part of who I am and I mean that yes in an identity sense, but right now I’m talking about physically, it might as well be glued to my body.
Kyle: Right.
Emily: People seem to think that it is okay to use my wheelchair as an armrest, a coat rack, a place to lean on, something to hold on to, something to touch just because they feel like they can.
Kyle: This is where Emily is being passive-aggressive because I do that all the time. No, no I’m just messing with you, but I really do, do that all the time. I know that when I do it it’s okay because we know each other.
Emily: Yeah, again okay like actually maybe it’s a good thing that I talked about your bodily autonomy issues first because I have earned the right to be all up in your grill if I feel like it.
Kyle: And I, I guess can use as an armrest when I feel like it.
Emily: Exactly, but also and this is an exclusively a disability thing, often times as much I know touch might be you showing some kind of friendly affection, I also know that you’re probably using me for balance.
Kyle: Oh yeah, almost always, I mean unless it’s like a hug or something.
Emily: Sure.
Kyle: So like, yeah.
Emily: So you know I am very much aware that if you grab me without asking, ‘you’, like you Kyle Khachadurian not anyone else grabs without asking that I just automatically understand like you needed to grab me in that moment.
Kyle: And it’s funny because in those cases, even though like I know it’s okay, and you know that I know it’s okay, and we’re all very understanding that this is a consensual thing, I still apologize like I just ran over your dog or something.
Emily: He does. You’re like, “Sorry, sorry.”
Kyle: Yeah.
Emily: But, there’s a greater understanding and awareness and acceptance and kinship, whatever, whatever, between us, but strangers will hold on to my wheelchair like it’s their arm rest and they will touch it without asking or lean on it without asking. Come up behind me and try to push it or move it without asking. My personal favorite is when I’m in some kind of a setting where I’m sitting in my wheelchair and someone leans on my wheelchair and starts talking, like having a conversation with another person, and I’m just sort of a prop for them.
Kyle: That’s pretty funny to me because like the able bodied equivalent would literally be if you… if somebody was having a conversation with their friend while leaned up against another dude.
Emily: Yeah.
Kyle: Like that’s a weird… think about that, if you’re listening. Just think about how strange that is, that’s exactly the same feeling, am I right, is it?
Emily: Yeah, it absolutely is.
Kyle: Yeah,
Emily: This is what I try to tell people but people seem to think that somehow a wheelchair is a different entity unto itself, just because it’s a machine, and it’s not my legs, my physical legs.
Kyle: Right.
Emily: But sometimes it’s really embarrassing, perfect example, I think back to high school a lot. I had a couple of teachers who thought that my wheelchair would be a great place for them to slouch, and rest their arms while they were lecturing the class because in high school, I would transfer out of my wheelchair to a regular desk. Park my wheelchair right next to me, and so it would sort of be blocking the aisle, but rather than respect the fact that that is still my very expensive piece of equipment and it’s still right next to me, teachers would just come up and lean on it and continue lecturing in the class like they weren’t leaning on what is essentially a pair of legs that I just had to pop off for a little while and leave next to me.
Kyle: Yeah, like that’s… to me that’s ridiculous, and I hope to all of you it’s ridiculous too.
Emily: Well, I’ve also kind of been accused of being over sensitive of that.
Kyle: There are… okay. I mean I don’t know, I guess I could probably think about times when you were being over sensitive specifically. I’m not going… I don’t know if like I can think of one right at the moment, but I don’t think that that’s being over sensitive. The only time I would say that something like that is over sensitive is when you sort of know you’re in the way but there is no other alternative because the place isn’t really as accessible as they thought it was, and like the only spot that they have for you is you’re in the way of somebody. And then yes I would say you’re over sensitive but not because you are, it’s because you’re therefore hyper aware of everyone having to go around you because you know that you’re in the way.
Emily: I am hyper aware… I swear I have a sixth sense when it comes to my wheelchair and people touching it, even if I can’t see it, I swear, I feel it. I know people are going to tell me that I must have taken a drug before we did this podcast, but I sincerely mean it. There is some slight change in pressure of my equilibrium, where someone will like stick their foot on my wheelchair and I’ll just feel the momentary movement and know that something is not quite right.
Kyle: Yeah, I don’t think it’s too crazy.
Emily: But then sometimes people will just like put their arm on it and it doesn’t shake the chair, but I just get the sense that someone is behind me touching me.
Kyle: Sure. See what you just said, you said touching me, that’s interesting. I like that.
Emily: Yeah, because it’s me. I am so inextricably linked to my wheelchair and this is not a matter of identity-
Kyle: No, this is literal.
Emily: Yeah.
Kyle: It’s funny, just the way we talk, it’s like when you break your arm you don’t say, “Well I broke me.” You say, “I broke my arm.” It’s like, “Oh it’s mine.” It’s a weird thing that when you say that, “Oh stop touching me,” even though it’s not the body that you live in, it’s the machine attached to the body. It’s just a weird thing.
Emily: Yeah, I love how you’re putting that.
Kyle: Why? Let’s talk about it.
Emily: It’s fascinating to me. I guess I never really thought to break it down in that way, as much as I always say that my wheelchair is a part of me, you’re absolutely right, I’m not really going to say, “Stop touching my wheelchair,” I mean I might, depending on what comes out of my mouth at the moment, but there are plenty of times where I’ve just outright said, “Can you stop touching me.”
Kyle: Yeah, but at the same time if your wheelchair breaks you don’t say, “I broke today.” It’s just an odd thing.
Emily: Yeah. So I wonder if that’s like a matter of semantics or if there is something going on in my head?
Kyle: Well it’s probably a little bit of both. I mean linguistically there are languages that say, “Oh I broke myself in the leg.” For example, English doesn’t do that, but there are languages that do. It’s just interesting to hear you speak in that way because that’s something I literally cannot understand.
Emily: When I am separated from the wheelchair, it becomes my wheelchair and not me.
Kyle: Oh see now that-
Emily: Even though it’s still a part of me, not me.
Kyle: That’s really interesting now.
Emily: So when I’m not sitting in it for example, let’s say I something I do frequently, I fly pretty frequently for work.
Kyle: Or like right now?
Emily: Or right now, better example than airplanes because screw airplanes really. So I’m sitting in an armchair in my living room, in my house and my wheelchair is next to me. It’s not ‘me’ next to me, it’s my wheelchair.
Kyle: One more question and then we can sort of go on to the bigger…
Emily: No, I love this, go on.
Kyle: Well of course we’re talking about you, of course you love it.
Emily: No, come on be nice.
Kyle: So now let’s say that you’re doing this, and I’m in your house, I’m not but let’s say I was and I sat in your wheelchair because it’s closer to you than the other chair, you wouldn’t say, “Oh get off me.” You’d say, “Get out of my wheelchair.”
Emily: Yeah.
Kyle: It’s a weird thing, isn’t it?
Emily: Yeah, but then also and I know this wasn’t what you were getting at but that also points to something really interesting. So even when I’m not in it, and it’s not me and it’s just my object, it is still so inextricably linked to me that if somebody sits in it, or touches it while I’m not in it, and I don’t know them, oh my goodness.
Kyle: Oh well, yeah obviously it’s… like that’s. At that point it’s like… My sister is almost like that when people lean on her car, and that’s not the same thing at all. But she’s got that…
Emily: I might be like that too, because I really love my car but-
Kyle: Well I think you are… look man, they both get you from point A to point B. I’m not saying they’re similar in any other way but-
Emily: But I have a story actually for real that points to this issue which is in early days of living with my college roommate who I love dearly, love her. She’s definitely one of the most disability conscious people I know now, but I had two wheelchairs with me in college. One of them was my manual wheelchair and one of them was my power wheelchair. Depending on what time of day it was, or where I was going, I would be in a different wheelchair, so there would always be an empty one in the room. So she had one of her friends in our room for a little while and she offered up my empty wheelchair as a seat.
Kyle: Did you teach her a lesson, after that?
Emily: Afterwards.
Kyle: Well I mean you were fine during, like that would just make you look weird.
Emily: I was silently fuming but I didn’t want to make a scene because you know-
Kyle: That’s what I mean, yeah.
Emily: That’s just whatever… in retrospect, I could have just said, “Hey can you not seat there.” But when she left I said, “Look, I love you, but that was not cool.”
Kyle: Yeah.
Emily: That’s not a chair for you to offer to people that I don’t know.
Kyle: Yeah. So mobility aids are certainly one aspect of bodily autonomy, but there are countless others. I think remember a couple of years ago, we were talking about this the last time we tried to make this episode where what was it? MPR or someone they posted a photo asking you whatever about these parents with this child who had various disabilities or whatnot and he was 16 years old and they took very… I don’t want to say compromising, but intimate…
Emily: But like kind of… intimate moments.
Kyle: Yeah.
Emily: Private moments.
Kyle: Of him in a diaper or something like that, and the parents gave consent to publish the photos to whatever news outlet they were and there was an article attached to it about whatever, like how difficult it is being a parent of a kid with disability or some bullshit like that.
Emily: Yeah, it literary was the story of them caregiving.
Kyle: Yeah, okay. That’s a topic for another day but we as the [0:14:50 inaudible] people are sort of empathetic to point, but that’s where the line is right there. That’s a little bit too much. Anyway, the point is, the article was very raw and powerful and whatever, but that they just published the pictures of this kid, and 16 should be old enough to be able to say, “Mom, Dad, hey, I don’t want my photo in this article,” right? Now, granted this kid had some kind of intellectual disability that sort of made it so that he probably couldn’t consent by himself but that shouldn’t therefore then give the parents full authority over using his likeness.
It’s one thing if it’s like for a life saving surgery or something like that, it’s the same thing with babies, but like when you… for a surgery. Not comparing a 16 year old to a baby, Emily made a face, I just wanted to clarify. It’s one thing to have power of autonomy when it’s something that you can’t control it as objectively better for you like something that will save your life that you can’t consent to because you’re sick, or you have some sort of intellectual disability or something rather. That’s one thing, but it’s quite another to publish your photos, your likeness, anything without your consent, anywhere, where people can see.
Now the reason that that’s a problem is because it wouldn’t have happened had the 16 year old been any other 16 year old. Now there is a chance that had it been a typical-
Emily: Do you mean any other-?
Kyle: I’m sorry neurotypical or non-disabled 16 year old or whatever-
Emily: Who was able to consent in some way?
Kyle: Yes, absolutely. Maybe, maybe, if the 16 year old didn’t care, but I know that when I was 16, I was very embarrassed about myself and I certainly wouldn’t like pictures like that up on the internet anywhere. Especially anywhere near my parents. Everything about that just sort of made me very uncomfortable and it’s something I really don’t say a lot. It takes a lot for me to say that, and I think that removal of bodily autonomy especially in the sense of personal privacy is something that I care deeply about and yeah, it just bothers me.
Emily: Yeah.
Kyle: That’s another example of like even though you’re not physically doing something to somebody’s body, you’re still by proxy removing their autonomy.
Emily: Right and it is comparable to a matter of autonomy in a sense of being touched or not because for some reason there is this binary, where it’s like, “Oh if he was non-disabled would you have posted a picture of your 16 year old able-bodied son in a diaper on Facebook?” No, absolutely not, but for some reason it’s suddenly occur because he’s disabled. If I was non-disabled, would you grab me by the shoulder or put your arm on my head or hang your coat off of me. Absolutely not, but because I’m disabled and happen to have mobility equipment, like a time you’d have free reign apparently in your head. So there’s just this sort of…
Kyle: It’s literal objectification.
Emily: Yeah, it’s… It’s an either or situation, so if you’re not disabled, then you know whatever, we’ll leave you alone. I mean obviously that is not true because bodily autonomy is a huge issue for many, many people, but I’m just using…
Kyle: No, we’re talking about this in terms of disability.
Emily: Right.
Kyle: There is definitely a binary there. There is a 100% binary there though.
Emily: And it’s frustrating because I never quite feel like my body is my own. Whether it’s being stared at, whether it’s being touched. Whether it’s being posted on the internet, not me per say but, you know, anyone, this is just a generalization about disability. I just have never fully felt like I have complete ownership over my body.
Kyle: Oh I do. But I’m saying, everyone should strive to, I know it’s a privilege to say in our world, but it’s something that everyone should do their best to strive towards because we don’t have much else really, that’s all we really have, it’s our bodies. When you don’t have… like that’s a big, if you take that away from somebody, I’m talking philosophically, but still.
Emily: No, but it’s true, our body is what houses who we are.
Kyle: And what we are.
Emily: I do think in this case it makes sense for me to bring up the fact that I am female and physically disabled sometimes gives rise to concern about the ways in which my body could possibly be objectified and there would be nothing I could do about it.
Kyle: Yeah. It’s not good.
Emily: That freaks me out a lot.
Kyle: Yeah, that’s pretty nasty.
Emily: I’ve read horror stories of women who are wheelchair users having their wheelchair taken away from them as a way to prevent them from escaping from a rape.
Kyle: I actually know people not as severe as a rape, but it was basically kidnapping, which apples and oranges, but still pretty nasty apples and oranges. I know people who that’s happened to. I won’t name names and you don’t know any of them but-
Emily: Holly-molly.
Kyle: It’s not cool.
Emily: No it’s scary, it’s really scary.
Kyle: The answer is also no to the question of would that have happened to somebody were they not disabled. Of course, it wouldn’t have, of course able bodied people get kidnapped and raped, that’s not what I’m saying, but like-
Emily: But it’s not the wheelchair being taken away.
Kyle: Right, there is no sort of mode by which you can do it a way that the greater people… yeah, there is not like one route by which if you remove this one thing, therefore you’ve done that. In the same way where if you take Emily’s wheelchair away, she can’t leave the house or something.
Emily: I’ve gotten to the point where if someone leaves the room and I’m not sitting in my wheelchair, but they moved my wheelchair and it’s not near me, then I will make sure to remind them, “Please put that back right next to me,” because I’m afraid-
Kyle: Well you should, I mean that’s ridiculous, you need to-
Emily: But it’s become this major fear that the one time I’m left without my chair is the one time I’m going to need to escape the house because there’s a fire.
Kyle: I mean the fire part of that is pretty irrational, but I mean that’s-
Emily: You don’t mean that?
Kyle: Of course I do. You don’t need to use a wheelchair to not be able to move without it because you know what that means. No one like the idea of being trapped somewhere, that’s a totally rational fear.
Emily: Yeah and that is a way to trap someone to take away their source of mobility. But it’s also, sometimes you feel and I guess I’m getting a little bit too philosophical here, but sometimes it feels like I’m in a trap because I am constantly objectified or subjected to being treated like my body is not quite my own, because of my wheelchair. Another example, which just occurred to me-
Kyle: Hold on I have a question.
Emily: What?
Kyle: You don’t have to answer right away because I want you… because I know you have your thought, but is your body really your own if you need your wheelchair to essentially use the rest of your body? Now that’s an honest philosophical question. I don’t think you’ll have an answer for it, I don’t expect you to have an answer for it, but think about it really. I’m not saying it should be, it obviously should be like. I’m 100% and so are you pro-bodily autonomy, but it’s a weird thing to think about isn’t it? I know you’re making a thinking face right now.
Emily: Stay tuned for my philosophical book on this in 40 years.
Kyle: I don’t mean to throw you in like an existential crisis. Continue, I’m sorry.
Emily: No, I’m going to go have one now after the content is over.
Kyle: Oh Jesus Frank, I’m sorry, goddammit.
Emily: I’m already spiraling, I feel it. But to go back to what I did say earlier, another way that my body is constantly not my own, although it’s improved over the years but it used to be so frustrating was, I was always a teachable moment, going back to the teachable moment thing for medical students. Often times it wasn’t voluntary, so I’d be laying there in various state of disarray in a doctor’s office or a hospital and the doctor would come in along with his 27 medical residents and I would be on display.
Kyle: Yeah.
Emily: And not like I wasn’t there.
Kyle: Yeah, I mean that’s happened to… I mean I’m not saying it’s not because of your disability, but that does happen to other people too, unfortunately.
Emily: I don’t think it’s right, whether you have a disability or not, but at the same time, I understand the doctors need to learn-
Kyle: It’s not right at all, but… I’m not going to say it’s a necessary evil because I wouldn’t say that something like that is evil, but it’s something that unfortunately does need to happen in order for us to have doctors in the world.
Emily: Well for me, it was that I always struggled with listening to a medical professional tell aspiring medical professional what’s wrong with me when I am in fact the expert.
Kyle: You’re right and also you’re like right there. Yeah exactly, that’s an odd feeling isn’t it? I’ve never felt it but like just imagining that-
Emily: Ooh so uncomfortable, but then there are times where I’m like willing to objectify myself or tokenize myself, maybe it’s-
Kyle: You’re not objectifying yourself if you’re doing it.
Emily: Well yeah.
Kyle: You’re choosing how to be.
Emily: Right, but I’m willing to make myself the token to speak to medical students, I’ve done that. There’s this video of me when I was four years old and my orthopedist was filming it for her med students. And she was trying to explain the various features of my disability and there I am four year old Emily going on and on because I clearly thought that I was explaining my disability to them.
Kyle: That’s hilarious.
Emily: But that’s the thing. I miss that feeling of thinking that I am entirely in control because I’ve been poked and prodded and stared at and all that stuff
so much that I no longer fully have that feeling, but at four years old I was not yet corrupted enough to think that I wasn’t the one who was telling those medical students about me.
Kyle: You know, I mean how much do you really know about your disability at four years old anyway right?
Emily: You’d be surprised, my parents truly molded into me.
Kyle: Well, that is pretty cool though.
Emily: Okay, tell me something, did you always grow up with knowledge of your disability and how it impacts your body?
Kyle: Uh-huh.
Emily: Yeah I don’t think a lot of kids have that.
Kyle: Yeah, but I mean at the same time I don’t remember the age which they used the term cerebral palsy, but also at the same time I went to a special school, where I knew, where I was told by everyone around me what I had. So even if they didn’t do it, I certainly knew about it. They never treated me any different except for when I needed to be treated differently. I don’t think that they used the word disabled all throughout my childhood except for in a medical context to their credit.
Emily: Really?
Kyle: Yeah. I don’t mean that that’s a good or bad thing I just think that like that’s a difficult thing to do when you have a disabled kid.
Emily: I’ve always had a conscious awareness of my disability. I’ve always known that it was an intrinsic part of my being.
Kyle: Yeah, I didn’t think anything of it in the same way. I really don’t now. I was just was, “Oh, okay, I guess that’s a thing then.”
Emily: No sure, but I don’t think I realized until later on, I was like, “Oh, this is a thing?” For a while it was just like, “Okay. I’m going to accept whatever anyone tells me.”
Kyle: I don’t really know when that change happened within me but I get, most changes, you’re not really conscious of when they happen right?
Emily: Sure. I know this has been a little bit all over the place, but the reality is that bodily autonomy has several different levels to it and all of them are equally important. When you have a disability, chances are you’re going to have your bodily autonomy, let’s see how many times we’ve said that in this podcast.
Kyle: I’ll tell you what the keyword is for this episode.
Emily: Violated.
Kyle: Well yeah.
Emily: Like going to have that violated.
Kyle: Well certainly more than you average able-bodied human being I think.
Emily: Do you have any particular experiences where you feel like someone kind of invaded your… God, I’m going to say it again, bodily autonomy? That is my question because I can think of so many off the top of my head and I’m just wondering if you have any experiences.
Kyle: You mean like related to my disability?
Emily: Sure, because-
Kyle: Not really, not in the same way that you’re talking about. Yes, but not in the same way. With me, like you brought up earlier it’s usually always a sensory thing which is almost always inward and like an internal screaming type thing, where with you it’s external because you’re wheelchair is on the outside of your and there is no way to do it. Even though if you might have an internal struggle, there is really no way to let somebody know what they’re doing to you without saying it, because it’s right there in front of you. It’s underneath you, and in front of them.
Whereas with me, most of it, is sensory, so if somebody touches me and I’m not expecting it, or anything like that, if you invade my space, I’ll flip out and it will set off my startle reflex, and I’ll have like a cold sweat in the back of my neck or something like that but I’ll appear fine, or at least as fine as I think. I probably look like a nervous wreck to be honest, but I certainly don’t… I don’t think I feel violated in the way that you are discussing. It would be interesting… I would be surprised if we could somehow quantify that and it would end up being the same thing.
Emily: What if you were falling and someone grabs you?
Kyle: No, I love that. Please do that. Please do that. That is the one time that’s fine, absolutely 100% always okay.
Emily: I can think of-
Kyle: Never not okay.
Emily: I can think of so many disabled people who would agree with you like whole heartedly.
Kyle: Okay, there are… there hasn’t been a time where helping me mid fall has made it worse. There have been times where unwanted help, again, for like the 87 thousandth time has led to my inevitable injury being that much more worse.
Emily: More worse?
Kyle: Yeah, like if I’m leaning on something like a door and you open the door, and I fall forward and hit the ground that’s because you tried to help when I didn’t need it.
Emily: Yeah, I feel you.
Kyle: But if I’m going down like, “Yo, help me,” don’t be shy because I’m not thinking about my sensory issues in that moment, and neither is the rest of my brain.
Emily: No, you’re thinking about flailing and whatever general direction you’re about to hit the floor.
Kyle: Right and bodily autonomy is something that like I said it before, like if you don’t have that, it’s a very engrained part of being a person. Forget a person with a disability, that just gives you… the only credence that gives us to talk about it more than anyone is the fact that we don’t have less of it. Everyone has the same amount of it, it’s just that ours is more contested and challenged, I guess. We’re not able bodied, but probably more than able bodied people. It’s bad to contest bodily autonomy. It might be almost… no, not almost, always, always. Obviously, if you’re a violent prisoner, I know someone is going to be like, “What if blah, blah, blah?” Yeah, of course, there are exceptions but as a general rule, bodily autonomy is probably one of the only things I feel is pretty absolute.
Emily: You know what we should have done?
Kyle: What’s that?
Emily: We should have made this podcast episode a drinking game in which you take this shot.
Kyle: Every time we say bodily autonomy, we’d be dead. There are, and we’re not going to go really deep into this now, but there are exceptions within the disability community about bodily autonomy particularly when it comes to things like assisted suicide or-
Emily: Pull that out.
Kyle: No, again I don’t want to talk… look it’s 37 minutes in, we’re almost done. Not only assisted suicide but also in cases where like a mother is pregnant with a child and the child has a disability, is it okay for her to have an
abortion. When speaking about that in a disability community, it goes beyond the general pro-life, pro-choice thing. It’s very uncommon to hear disabled people come out and support something like that. The only time you’ll ever hear it is if they preface it with, “Well, I’m only doing so because I’m staunchly pro-choice no matter what, but this is still a disgusting thing to do,” or something like that. That is another example where even though it’s not us, we tend to pull our reigns in. I’m not going to say what my opinion is. I don’t know if-
Emily: I’m going to say where my opinion is because if you have listened far enough into this podcast, then you get to hear my opinion. That is, we have a double standard in the disability community because bodily autonomy is something we all deserve until suddenly we’re like, “No, I want to exercise my bodily autonomy and die,” and then we’re like, “No.”
Kyle: Wow, you’re really doing this? Okay, yeah me too. That’s how I feel. I know that there are very legitimate arguments for the slippery slope; I know I’m not discounting that. I know.
Emily: No man, you shouldn’t even say it like that, because those are legitimate arguments, they are legitimate.
Kyle: I’m not saying they are not. I’m saying I’m aware.
Emily: But you go like slippery slope-
Kyle: No, I’m saying it like that, because I know what’s coming. I know what’s coming, and that’s absolutely true and yeah, it’s there, it’s valid, but does that justify because of a fear based on legitimate data, something that can be avoided with training doctors not to immediately recommend it to disabled people, rather than removing bodily autonomy entirely, I don’t think so. I don’t think removing bodily autonomy and removing somebody’s ability to choose what they do with their own body is the right choice and course of action for anything including the right to choose if you want to die.
Emily: Yup, I want to be able to choose every aspect of my life and that includes dying.
Kyle: At the same time, I would say the same thing about a mother who decides to abort a baby for whatever reason, I might think her reasoning is wrong, and I might think that she is wrong in doing so, whatever, but that’s also bodily autonomy and that’s…
Emily: Sure, but I’d be super mad about it.
Kyle: Of course, no one’s pro-abortion.
Emily: No. I’m sure there are plenty of people who are pro-abortion and probably going to like smack you over the face with a skillet for that.
Kyle: I’m not.
Emily: I’m saying the problem is I’m pro-choice, but obviously pro-life in the sense that I want a baby with a disability to be born, even though they have a disability.
Kyle: I do too, when I say I’m not pro abortion, I mean that it’s a necessary evil even though it’s probably some of it.
Emily: I used to tell everyone to listen to the end of this podcast because that’s where we get real.
Kyle: When I say I am anti-abortion, I don’t mean that I don’t think women should have the choice, of course they should, everyone should, that’s ridiculous, you should. What I mean is that it’s something that nobody looks forward to doing. Show me one, I challenge anyone listening to this to show me one-
Emily: I guarantee you, you’re going to eat your damn words on that one.
Kyle: I’m looking forward to it, I swear to God, show me one person, and I don’t mean the relief afterwards of having one, I mean like the journey of going there. I know people who have had one, I’ve read stories. I don’t have any firsthand experience because I am a man. But I would genuinely love to know that because I would change my mind, I really would. Having said that-
Emily: Yeah I don’t think anybody goes to the clinic and is like, “I’m going to have an abortion today woo-hoo.”
Kyle: That’s what I’m saying.
Emily: Yeah.
Kyle: But what I will say is that if you are somebody who chooses to terminate a pregnancy because you got some test results back and thinks that it’s-
Emily: And your baby has Down Syndrome.
Kyle: Whatever, like… you’re in your right to do that. I would be totally hypocrite if I ranted about how important bodily autonomy is for 42 minutes if I didn’t think you were in the right to do that.
Emily: But I’m going to be mad about it.
Kyle: Yeah, I’m not going to be happy about it. I wouldn’t be a good “Disabled TM” person if I wasn’t going to be mad about it.
Emily: #RealDisabled.
Kyle: I’m not going to be mad that you exercised your right to choose.
Emily: No, I’m going to be mad because of why you exercised your right to choose.
Kyle: Yeah, that’s a different thing. It’s a very important distinction particularly in cases just like this.
Emily: Sure. Which goes back to the need for information and education and teaching people that disability is not all together the worst thing in the entire world.
Kyle: No, but it’s also a reminder to us that it’s also not the best thing in the world and… that’s why part of the reason we do this, I know that in every episode that we have, we sort of touch on why we do this, but one of the reasons is, we really try to not romanticize this ability, but also to not like shine in the worst light either because in our community, you get like this weird idea from the general populous that like having a disability is not only not bad but it’s also good and should be loved everyone should love themselves, I’m not saying you shouldn’t but there are certain things about having a disability that do suck.
Emily: I’m thinking is not coming up roses.
Kyle: Right, and so if you don’t talk about that, that’s sort of like in my opinion doing a huge disservice and that’s sort of…
Emily: Yeah, I think we try to be balanced in the sense that we don’t want people think we lead some miserable existence but it’s also not like a walk in the park all the time, or a roll in the park.
Kyle: We’re pretty miserable, but it’s not because we’re disabled, we’re just depressed.
Emily: Stay tuned for our next episode on mental health issues.
Kyle: I mean, now we have to. Thanks, but my final takeaway is that if you are disabled, the odds of your bodily autonomy being challenged is probably much greater than your averaging body counterpoint. It’s a thing that everyone should have. It’s a thing that defines people and schools of thought, it’s probably one of the most important things in the world. You shouldn’t ever have a challenge level I’m taking away by anyone other than you, especially not through circumstances of your birth, like a disability, that’s ridiculous. In fact that’s like the worst reason to ever, “Oh you were born this way? Oh I guess you don’t get to be a person,” like that’s stupid. Don’t think that way, you’re wrong.
Emily: I have a less of a both takeaway, my body, my choice.
Kyle: My choice, hey.
Emily: No but for real though-
Kyle: Oh, here we go.
Emily: …don’t touch me.
Kyle: Or her wheelchair. She’s making a face at me because I said she said ‘Me’ and it includes the wheelchair, she… you know what I’m getting at.
Emily: I know what you mean. Don’t touch me, unless I like you, then probably still don’t touch me, but if you’re Kyle, it’s fine.
Kyle: Oh, come on, that just makes it sound like I’m the only one that… don’t do that to me…
Emily: I am kidding, I am obviously kidding. No, it’s funny because I actually am a very touchy feely person.
Kyle: And I am like not.
Emily: I am a hugger. I am a toucher.
Kyle: She is the worst.
Emily: Or the best.
Kyle: No, you’re actually… I mean-
Emily: I am so great.
Kyle: You’re the worst person I know.
Emily: I know.
Kyle: Anyway, that was it for this episode of The Accessible Stall. Thank you for listening and waiting around for us for 45 minutes trying to make sense of something that is… you could probably write a dissertation about.
Emily: I have one more thing to say though.
Kyle: Oh sure, go on.
Emily: Bodily autonomy.
Kyle: Oh yeah and furthermore, bodily autonomy, and finally, bodily autonomy.
Emily: And finally for real this time, all together now-
ALL: Bodily autonomy.
Kyle: Hurray, if you’re playing that drinking game, I’m sorry. This releases The Accessible Stall from many of legal ramifications of instantaneous death upon alcohol poisoning and all that shit. Okay.
Emily: We’re not lawyers but don’t sue us if you play our drinking game and die in the last 10 minutes.
Kyle: So anyway, that’s it for this episode of The Accessible Stall, we don’t know how to end an episode. Goodnight everybody.
Emily: How do we know it’s night time, I say this every time, what if it’s not night time?
Kyle: Then listen to this when it’s going to be night in 45 minutes. Goodnight everybody.
Emily: Thanks for listening.
All: Bye.