Emily: Hi, I’m Emily Ladau.
Kyle: And I’m Kyle Khachadurian.
E: And you are listening to another episode of the Accessible Stall.
K: What are we going to be talk about today, Emily?
E: Today, we are going to talk about disability as it relates to body image and sexuality, but we’re not going to do it alone because we have our first guest with us.
K: Who could it be?
E: Her name is Ashley and she’s pretty awesome. Ashley, can you introduce yourself? That will be so great.
Ashley: Yeah. Hi, all. My name is Ashley Harris and I’m coming to you all from sunny and horrifyingly humid Charleston, South Carolina. I blog over on ashleysaharris.com and my blog is called Barbie Feet because I have CP and so my feet are shaped like a Barbie. Anyway, I love to write and speak in all venues, and beauty standards and disability is one of my favorite things to chat about. I’m super excited to be hanging with Emily and Kyle and getting to talk about one of my favorite things. It’s going to be super fun.
E: We’re really excited to have you, and also funny story, you mentioned Barbie Feet. Kyle and I first knew of you as Barbie Feet and that’s what we always call you in our heads because we discovered your blog before we discovered you the person.
K: Right so–
A: Oh my Gosh. I’m so glad you all call me that.
K: We kept saying we have to get Barbie Feet on the show. We should probably show our old chat logs, our screenchat or something. It’s really funny.
A: Oh my Gosh. That’s great.
E: Yeah, #teamBarbieFeet.
A: Let’s make that I think. Stitch that in a throw pillow or something
E: Or a T-shirt. I think I’m all about this or a tote bad.
A: Even better, even better.
E: Anyway, we’re really excited to have you as our first guest because we talked about disability and sex a while back, but we haven’t yet ventured into disability and sexuality and body image which are totally different animals. I really want to talk about, from all of our perspectives, how disability either does or doesn’t play into how you perceive yourself and also I guess how you perceive other people who are disabled. I hate to make it sound like an interview, but I guess I’d love to hear both of you to see if it’s anywhere near my experience with struggling with body image growing up and what growing up was like for you.
A: Take it away, Kyle.
K: Well, my experience is going to be a little different from you guys because I’m a guy, and so right there everything is a little bit different. I can say that my CP never really was a reason for any body image issues that I had which I imagine is rare, like it’s not very common that the disability isn’t part of body image issues. But that’s not to say I didn’t have any. Growing up, I always thought I was too skinny and that you could see my ribs when I had my shirt off and I would never like to do that. It was always embarrassing. Even now I’m a little shy when it comes to things like that. I’m the guy with his shirt on at the beach.
In my head it was never because of CP. It was just because I just didn’t like what I saw on the mirror. You could say that that was probably related to CP, but I never really made that bridge in my brain to connect the two things together. There was always that little bit of separation between my disability and my body which is somewhat ironic given the things that I’ve said on the show before, but that’s just how I perceived it.
E: Did you ever look in the mirror and go, “I look good today.” Have you ever had a moment like that?
K: Oh yeah, sure. I think we’ve all looked in the mirror and went, “Mm,” had like–
A: [0:04:41 inaudible]
K: We all have a Buffalo Bill moment from The Silence of the Lambs, if anyone knows what I’m referencing. But for the most part, I was pretty neutral on myself honestly. I’ve had friends that didn’t like how they were ever and I’ve had friends that always liked how they were, but I was fairly in the middle as I am with most things. Yeah, I woke up days where I’m like, “I don’t feel too pretty today,” but then I’ve had days when it’s like, “Oh, I look good,” even though nothing really changed. I’d never really figured out why that was, but I don’t know if CP had much to do with it, at least for me.
A: I think I would to agree. Growing up as a child, I don’t think that I am walking up to not having to realize for a long time that there was anything different about me whatsoever. I was just this tiny little child with like three feet of huge hair and just ran around like a crazy person. But when you’re a kid you’re so far removed from what is right and what is normal and what is beautiful that that doesn’t really cross your mind. You’re just rocking your little butterfly AFO braces inside your shoes that are three sizes too big, and you’re not really all that worried about it.
I think that as you get older and you become more aware of what is considered normative and what is considered desirable and what is considered beautiful, all that, especially I would say again, for women, those are very clear and very defined things of what is and what isn’t. I think that only as you get older, you become more and more aware of that, but at the same time I would say that I was lucky enough to also, during that same transition, come more into myself and own my own uniqueness, I guess if that makes sense.
A concrete example of that is in high school I won my high school’s beauty pageant, and it was a turning point for me at 16 at a time when body image issues usually run rampant among girls. I was struggling with my own issues with that, but then here I was crowned this beauty queen not because I walked funny or looked different or whatever but just because I was the funniest and I was the best. That was like an aha moment where I was like, yeah, maybe I am different and maybe I didn’t look like everyone else on that stage, but maybe that was the best thing I could have had going for me at that moment. I think that that sort of mentality of owning your difference has always driven me forward I guess in that sense.
E: You see, I would say that I came into my own a lot later because I was super resentful of my appearance in general. I’m really short and my weight all settles in one particular part of my body, in my stomach because I’m sitting all the time. That’s what everyone sees, everything is all scrunched up. On the very, very rare occasions where I stand up with my leg braces, you’ll see my body shape looks totally different, but I was just always conscious about how I looked, how I fit into my clothes, how I was keeping up with what everybody else was wearing, and I felt, I would say, bad about myself most of the time even though it really wasn’t anyone saying anything that would make me feel bad about myself.
It was me beating up on myself and so then people would start to say, “Oh well, but you’re so smart and you’re so funny and it doesn’t matter how you look,” and blah blah blah. On the one hand I want to say I guess I started to think that beauty isn’t important, but on the other hand I started to think that people have way too narrow definitions of beauty but it took me a really long time to get to that point.
A: Yeah. I would say the same thing as well. I think you all would probably agree with this, but I think sort of the crooks of the issue for those of us with disability is in not assuming that beauty or desirability or sexuality is something that belongs to us and that we can rightfully claim as our own. Part of the reason for that is that we’re never presented with any sort of image or likeness of our own self in that context. Like we are never shown by example, here is a person with a disability that is beautiful, or here is a person with a disability that is sexually desirable. It’s always, here is a person with a disability that’s funny, or that is likable, or that is really loved, or on the negative end of that spectrum, is only present because of their disability.
I mean not that these things are intrinsically bad, and I do think that that is changing and that we’re making great steps for changing that, but I think that a lot of the issue is just the representation isn’t there.
K: I would agree with that. I think that’s a big part of it, very big part of it.
E: The other thing though is Ashley and I are talking a lot about feeling beautiful. I guess you never really came up against that, Kyle. In a way, I almost think there is this divide between men and women with disabilities and the things that–
K: I don’t think that’s disability exclusive at all. I think that’s men and women, period.
E: I agree with that. I should have been more clear on that, but I think the disability adds an extra layer and even more so when it comes to being female than when you are male. Other than that, I still have trouble looking in the mirror and being like, “Oh, I’m sexy.”
K: It never happens. I don’t know if that’s because of the societal pressure or I’m just modest, I don’t know. I can say that for me, in terms of that, I was a late bloomer in that regard. No one really found me desirable until I was 16, and then when they did, I was like, “Who? Me?” Even now, I still haven’t lost that. I haven’t lost that like, “You’re talking about me, right?” That’s still a thing that I have to unlearn and shake off. I’m sorry to go back to something that you said Ashley, but in the beginning you mentioned you were rocking your butterfly AFOs.
A: Oh my gosh, yes.
K: Yeah, I actually went to a school where Pre-K through high school everyone there had a disability.
A: Really?
K: Yeah. I guess we can talk about education in another episode, but it was interesting because for me I grew up in an area where things like crutches and wheelchairs and AFOs or braces, if that’s what you want to call them, were totally normal things. I knew that I was different. I knew that everyone around me was also different from a normal person. I was too young to know why, but I at the same time never saw things like a wheelchair or a walker as “abnormal,” just as different. I think a lot of that has to do with the fact that I was exposed to such a thing at a very young age.
A: Oh, I’m sure it would. It’s quite the antithesis of my entire formative years. Even in college, I only knew two other girls who had CP. That was it, so I think that I just had to make peace at an early age that, yes, this is not necessarily a normal thing but it’s my thing, so I might as well roll with it. I can definitely see where you would have had the opposite approach which is equally as awesome I think.
E: I was always considered to be the cute and adorable little girl in a wheelchair and I think I still get that. “Oh, how cute, she’s so cute.” And so I would–
K: [0:13:24 crosstalk] call that patronizing more that anything else?
E: Yeah, and that drives me a little bit up the wall and back down again. At the same time, I guess I ate that up when I was little. I certainly didn’t have butterfly braces or AFOs which stands for Ankle Foot Orthotics just to make sure everybody knows. I didn’t have anything that was too loud because I didn’t want to call too much attention to my disability, but at the same time, I had a hot pink wheelchair, I had purple straps on my leg braces, I had a bright blue walker. I guess I tried as much as I wanted–
A: Oh God [0:14:01 inaudible].
E: I wanted to disassociate from my disability, but I also wanted it to be a little bit of its own accessory, if that make sense.
A: It makes perfect sense. It’s the same reason I had either butterflies or Barbies on every pair of AFOs I ever owned.
A: Yeah–
E: Wait, they made Barbie braces?
K: I didn’t even customize them with pictures. I always had just the plain ones. My parents didn’t love me as much I guess.
A: Oh no, white was way too boring and always with the saddle [0:14:41 inaudible], no other shoes. I would not have them.
E: Oh yes. I wore saddle shoes all the time. That was the thing. If you use any sort of mobility equipment, regardless of whether you identify as male or female or whatever gender you identify as, I feel like clothing is an issue that everyone can relate to especially when it comes to disability because you have to find, especially if you want to look attractive, you have to find the right pair of shoes or the pair of pants that doesn’t make your butt hang out when you’re sitting in your wheelchair or–
A: [0:15:16 inaudible] when you are walking down the side walk.
E: Yeah, I was constantly worrying about clothing because I wanted to fit in somehow with my clothing, but at the same time I also needed clothing that was practical for me. I used to think that was a girl thing that I had to have all the cute clothing and the clothing that I wanted to fit in, but now I realize that I think it was more of a disability thing for me because I thought if I wore the right outfits, that it would somehow distract from the disability.
K: I don’t know about distracting from it, at least for me, but as far as clothing goes, my biggest struggle now and forever was always shoes because CP is just a wonderful way to ruin shoes. It’s like the best way and it’s this constant struggle. I really think this does transcend gender and it’s a real honest to God CP thing because you have to find this balance between looking good, like fitting well and then also being cheap. It’s sort of a pick two out of those three because even the nicest pair of shoes, even if you pay top dollar for a nice pair of shoes, the amount of extra time that buys you before the shoe is ruined is at least for me is at most a month and it’s really not worth it. When I wear dress shoes, I treat them like gold. I walk very carefully. It’s true.
E: I’m sorry I totally ran your foot over while you were wearing dress shoes just a couple of weeks ago.
K: That’s fine because that doesn’t do– that’s not a problem. That comes out with cleaning the shoes and polishing them, but the problem is that, I drag my left foot over a little bit and a little bit times tens of thousands of steps means that that shoe just gets ruined after a very short period of time. My favorite shoes are Timberlands because they have thick rubber in the front and I constantly rotate them because they’re versatile and affordable and thick, but even they are not great. Where shoes wear in three months, they going in four. CP is just a death sentence when it comes to shoes.
A: I can second that, and third that, and fourth that. I can’t really say anything because I probably have 50 pairs of shoes. I am a bit of a clothes horse and shoes horse. I honestly can’t think of a time when I tried to use clothing to distract from my disability or to camouflage it. Sometimes I wear leggings and I wear shorts a lot because I’m like, “Yeah, my legs look good. I might as well show these things off.” But I think for me, the biggest clothing or shoe-related issue, if you can even call it that, that I ever had is with the idea of high heels. Let’s be honest, every woman in the world, a high heel is just a sort of symbol of femininity and being pretty. They just are pretty. So for a long time, I just very uncharacteristically sort of wrote high heels off. It was just like I will never be able to wear this things, my ankles just cannot just hack that, it is not going to happen. Then in college, lo and behold, one day I decided I was just going to just try it out, and I actually have been able to find – shout out to Toms for their low profile wedges – an occasional pair of heels that I can walk in without killing myself. I hate to admit that it makes me as happy as it does, but it really makes me happy.
K: No, no, there’s no shame in admitting.
A: I wear high heels and feel like a badass, capable lady that I am. It’s such an ego boost. I’m not even afraid to admit it.
K: There’s no shame in finding shoes that work when you have CP. It’s always a holiday.
A: [0:19:31 inaudible] expensive or out of reach.
E: I definitely remember I was reading something from an author that I really like. I think her name is Danielle LaPorte and she’s very much into self-empowerment and coming into your own and things like that. I would call it a little bit new agey, self-helpy. Anyway, she had a list of ways to really embrace your inner power before giving any sort of presentation or doing something that’s really important to you. I think one of them was something about wearing high heels. For a lot of people, that’s so true, but for me, I can’t really wear high heels even though I’ve seen people who use wheelchairs attempt high heels, but they just don’t make any sense to me. I was thinking about that and I was like, “I know she didn’t mean any harm at all by what she said, but I can’t wear high heels. Does that mean that I’m not as powerful or as able to command a presence because I can’t tower over the room in my giant stilettos?”
K: Obviously.
E: It’s like this femininity and authority complex that I end up having.
A: Understandable, and I would go as far as to say that that ventures into the realm of just dress clothes, period. I don’t know about you all but I have the world’s skinniest toothpick legs, so dress slacks are like a nightmare. I’m always super self-conscious when I have to wear slacks because they just– and because my knees turn in and they bend simultaneously, double the fun, they just don’t hang– like dress pant fabric just doesn’t hang right and it always looks funny. Also dress pants are tailored usually longer than they should be especially for women because they’re meant to be worn with heels. Yes, I have three pairs of high heels that work for me, but what do I do when I can’t wear those three particular pairs of shoes? I would definitely agree that pencil skirts and dress pants are not friends of those of us who have atypical body types.
K: Well, it’s true for men too. I love wearing a suit as much as the next guy, right? That’s like the biggest ego boost in the world, but getting it on is a circus. People pay a lot of money to have therapists. They come and do OT and they go to OT and do their thing, but if you want OT on a budget, all you want to do is put on a button down shirt–
E: Occupational Therapy. Just making sure we’re clarifying our acronyms.
K: Occupational Therapy, but if you want good OT, just put on a button down shirt and take it on and off ten times. There are things–
A: Right, or a [0:22:23 a glove].
K: I have no problem doing buttons, but the top button on a dress shirt because it’s sideways, or wrist cuff buttons on a shirt because they’re a things that have to exist for some reason, or tying a tie which I can’t do.
E: Yeah, I have all the problems with buttons.
K: Those are things that people without disabilities– I mean I don’t think it’s exclusive to CP, but I know it doesn’t help. It’s just a problem. Getting ready for me is a circus. I can do it and I’ll look the same at the end, but it will take me 25 more minutes than you or something like that.
E: Do you guys have a lot of scars on your body?
K: Yes.
A: Oh yeah. I wear them like a freaking badge of honor most of the time
K: What choice do you have?
E: Well, yeah. I’m thinking because you are thinking about pants in general, and pants are constantly my go-to. It’s actually pretty rare that I wear a dress these days, and if I do wear a dress, I make sure my legs are covered up with tights or stockings somehow. I don’t wear shorts in the summer because I have massive scars in front of my knees and they’re really, really noticeable. It’s taken me a long time to make peace with those. I don’t know if I fully have. I got to be honest: the thing that helped me to most make peace with my scars, and I guess this goes from clothing covering it to more of the sexuality aspect, was like the first guy that I dated very seriously, he was also a wheelchair user and had a disability and he had a lot of scars too. So I felt less self-conscious about scars and things in front of him.
The person that I’m dating now, the first time that he saw any of those scars, I was not even sure what was going to come out of his mouth, but he just touched them a little bit. He was like “Oh, so these are from your surgery? Okay, moving on.” I think it took that. I hate that it took the validation of another person, but it really does take validation from someone else sometimes to make you realize that just because you have all these scars on your body doesn’t mean that you’re somehow less attractive and that you need to always be covering them up.
K: Certainly not. Don’t feel bad about taking validation from another person. Sometimes you need that. You don’t like your own statuses on Facebook, do you? It’s the same type of thing, accepting in the real world. Sometimes, you may need the extra push from somebody else to be like, “Oh okay, yeah, this is good.”
A: Right, and furthering your defense, it’s not just validation from any old person. That’s validation from the person that you’re sharing your life with and that’s most important to you that they see you as an object of desire and attraction. I don’t think you should sell yourself short with that all.
E: [0:24:51 crosstalk]
K: Sorry, go ahead.
E: Oh no, go on.
K: I was going to just talk about scars. Most of mine are covered by clothing and most of them are surgical, some are not. I don’t know. The first girl that I was ever serious with had a whole bunch of scars all over that were not surgical. That made me feel a lot better about mine, but ever since that, I warn everyone that if the situation arises that I have scars on me and they might come off as unsettling at first but they look scarier than they are. I don’t care about them, but I just want to make sure that you’re ready to see them.
They don’t bother me at all, but I know that for some people, seeing them might be– they might not like. They might find it unattractive, but I find that if it’s someone that you’re dating or something like that, if you let them know beforehand, there’s nothing to be afraid of. In my experience, the unsettlingness of scars comes from the fact that people generally don’t expect them to be there because scars are some indicator of damage of sorts, but if you know they’re coming, then you know that it’s just going to be okay. None of that made sense, I apologize.
E: No, I totally get what you’re saying.
A: I get it.
E: I finally made peace with my scars, but it took a really long time. Part of the process in that was honestly very recent. Last December, I got a tattoo. It’s my first and probably only tattoo, much to my mom’s chagrin of course, although she warmed up to it afterwards. The reason that I got my tattoo and I got it at a very visible place; I have a peacock feather on my inner right wrist. It’s very bright and noticeable. You really can’t miss it unless I cover it up.
My reasoning behind that was because that would be the first mark on my body that I had complete and total control over making it happen. Not that I gave myself the tattoo, but I was the one who decided to put it there and that I was conscious and awake when it happened because the rest of my scars are from various surgeries and things like that. That was my little way of taking control over a part of my body. I wouldn’t say I’m 100% there yet by any means with accepting myself, but that was a big step in it, realizing that I do have power over my body and myself and who I am and how I see myself.
K: I don’t know. I don’t have tattoos, but that’s the best argument I’ve ever heard for wanting to get one other than I want one.
E: You have piercings, though.
K: Yeah, but I have piercings because I like them. It has nothing to do with anything you said.
E: Yeah, I know.
K: I just think I like them. I think they make my ears look nice. You took it to a level of using your body modification as a path to bodily autonomy, and I’m just sitting there like well I think my ears look better. So it’s not the same. Sure yes, I have piercings and I have put them there and that’s my little decoration in this temple I call a body. You have actual reasons and I don’t. I am just like, “Aesthetics only.” Very shallow.
A: Yeah, sure. I definitely have a list of tattoos that I want, but I’m more on the Kyle side of the spectrum. I just want them because I think they’re cool.
E: Girl, do it. Oh my goodness, they are cool. Regardless of my whole bodily autonomy speech, I also just love it.
A: You also just think it looks rad, which is just important, but I do aggravate my parents a lot because most of my scars I guess, if I wear shorts, you can literally see all of them. They’re pretty symmetrical. They match, which is nice.
E: Me too.
K: Most of mine do too.
A: I’ve always told my parents that I’m going to just tattoo on each one of them like a symmetrical set of zippers.
K: Oh, that’s awesome.
A: Like chain zippers on my legs, and my parents are like, “Please for the love of all that is holy, do not do that”
K: Do it.
A: I do give them down the road about the hypothetical zipper tattoos. [0:29:46 inaudible] look pretty badass with at least one.
K: Yeah, you should definitely do that.
E: Oh my gosh, do it and then I will probably end up copying you. I’m not even going to lie.
A: [0:29:58 inaudible], I’ve thought about it.
E: Well, I have one scar that is literally– you know the motion that people make where they take their hand and they cut it across their throat, like stop it or I’m going to kill you, whichever the case may be. I have a scar right there because I had spinal surgery in the neck area, my upper spine, and that’s one scar that drives me bonkers, but people don’t really notice it. It’s funny because to me that’s the scar that I think about all the time, but to other people, they barely even realize it’s there because it’s under my chin and you have to really point it out to them. I have scars from the neck brace device that was holding me in place while my head was healing, my neck was healing, called a Halo. It literally screws into your skull.
A: Oh my gosh.
E: Yeah, for a while I contemplated how can I get plastic surgery to fix this or can I use a ton of Mederma, like that scar stuff, and cover it up or do I need to start wearing make up all the time. Actually the opposite happened and after that surgery, I almost entirely stopped wearing makeup altogether except for some occasional eye liner or lipstick. I guess I started to find value in myself and worry less about my appearance after this major scar-causing, life-altering surgery. That was a really long ramble. Did you get any of that?
A: Yeah, you go girl. You don’t need to have makeup.
K: Yeah, I know. I also stopped wearing make-up after my surgeries.
E: I’m glad we had this moment.
A: I really don’t wear a ton of it either to be honest. I just occasionally fill in my patchy eyebrows and don on a red lip when I’m feeling extra sassy, but that’s about the extent.
E: Do you ever feel more compelled to go out of your way to look good when you’re doing something because you know that people are basically going to look at you anyway once they see you moving around?
K: No.
A: Yep.
E: Perfect responses. Yeah, because I’m like that all the time. I’m like if they’re going to be looking, I suppose I shouldn’t do something about it.
A: Absolutely. If I’m going to an event or if I’m going out with my friends to downtown or wherever, you best believe I’ll be dressed to the nines because I know that everywhere I go, people are going to be staring at me. They might as well also be staring at me because I’m hot, not just because I walk like I’m doing the worm while standing up.
K: Is that what you call it? I call it a penguin waddle.
A: Either way you slice it, I think that gets the point across. I definitely do that. For me, I have very big hair as well and my hair has always been my security blanket in a weird way because I am such a small person and I have this giant voracious mane of hair. I have always used that as a shield. That’s what people see first I guess is my hair instead of me. I always use my hair to hide behind so that everyone would always compliment my hair and that will just take care of all the compliments I guess, but then a year ago I chopped all my hair off. That’s been a journey of self-discovery of sorts I guess. I can’t hide behind my mane anymore.
E: My mum is always telling me I should cut my hair off, not all of it, just because disability-wise my hair is actually hard for me to manage physically because I also have a massive, unruly, curly mane of fluff on top of my head. Recently, I started to really embrace that, no matter how much a pain in the butt it is to take care of it. I’m trying to find the positives about myself instead of the negatives.
A: [0:34:31 inaudible]
E: Yeah, I think I’m finally making peace with a lot of aspects of myself, hair included because my hair can be a big old hot mess sometimes, but I’m definitely–
A: [0:34:43 crosstalk] right now.
E: Yeah, it’s everywhere right now, big giant mess. I threw it up in a bun and that’s about the extent of what I can physically do in terms of doing hair. Maybe put it into a ponytail or half up, half down.
K: I just cut my hair off.
A: I’m the same way. It’s a good thing it’s low maintenance because I can use a flat iron, but a curling iron is just a little bit outside of the realm of my fine motor skill capabilities. I am getting so better at it, but I also have burnt myself many a time.
E: Kyle too. Kyle uses a curling iron all the time.
K: Yeah, of course, everyday. In fact, most of my scars are actually on the hands from–
A: From the curling iron.
K: Yes, definitely.
E: I don’t even think there’s a picture of us on the podcast site, but Kyle has no hair. Kyle has little hair.
K: Well, I pretend to grow it out in the winter because otherwise my head’s cold, but most of the times I cut it as close to the skin as possible because I am just too lazy and it’s probably the only place in my life where I legitimately pull the disability card because that’s where my fine motor skills stop. I could do it, but it just takes too much effort for too little reward for me. I just cut it off and so I wake up and it’s already done.
E: What do you mean? The hair gel thing?
K: Yeah, like the style of my hair. I could do it. I’m not saying it’s impossible, but I’m just saying the amount of effort it takes versus the amount it looks good to me, it’s too much. It costs too much of my time, so I just prefer short hair.
E: Sometimes it’s a matter of practicality over a matter of how you actually look although you look just fine with short hair.
K: Yeah, that’s another thing. I prefer it… I like how I look better with short hair, so that helps.
E: For me if I cut my hair off just to make it more accessible to get ready in the morning, I’d be losing a part of myself.
K: It would grow back, don’t worry.
E: No, see that’s not what I mean though. I know it would grow back eventually, but giving up something because of my disability that I have a choice not to give up is something that I don’t think I could bring myself to do.
A: Yeah, that’s hard.
K: I feel like hair might be a little bit of an exception because it grows back, but I don’t know. Maybe that’s much harder with something else.
A: Listen; from somebody who literally chopped like 13 inches of their hair off last summer, it does not grow back as first as they want you to think that it does.
K: Right, I’ll take your word for it.
A: Emily, don’t cut your hair off. It’s beautiful.
E: Oh my, well tell me something though. Did you cut your hair off for something disability related or was it totally unrelated?
E: I honestly just think it was an out of body experience. I was moving and I actually got a new job and I think I was just kind of like, “New hair, new life. I’m not going to hide behind my hair anymore,” so I cut it all off. It’s a terrible life decision but you’ll only learn.
E: Yeah, sometimes you just have to stumble around and figure it out as you go.
A: All day every day.
E: And then the other thing too that I think has been helping me embrace myself lately is that in the past couple of years I’ve done a couple of photo shoots for different organizations, one being called the Raw Beauty Project and another way more recently called Positive Exposure, and both of them are focused on positive depictions of disability in the media. Raw Beauty is specifically being for women and Positive Exposure being for people with all different types of disabilities, any gender. That was a pretty powerful experience for me because it was being in front of the lens of a camera because someone was painting me as attractive, I don’t know if that’s not out coming right at all. I was considered attractive in that moment and I finally started to believe it myself.
A: Oh yeah. I mean, Rick, if you’re listening, we love you.
E: Yeah, Rick Guidotti and Positive Exposure, best ever.
A: He is the best. I had a situation very similar to Emily’s. Rick and I have a mutual a friend and she said, “Hey, I know this girl who has CP and you really should meet her.” So we just randomly met one day and he took a ton of photos of me, and because he is a very brilliant and kind and gracious man, he was like, “Ashley, has anybody ever told you that you should model?” and because I am never that gracious, I kind of snapped back at him. I was like, “No, because I don’t think you’ve ever seen any models with CP out there, have you?” or something equally a sassy. He was like, “Well, you know, there should be models with CP and you should be that person.”
Like Emily said, that was like a turning point for me where I was like, wow, maybe all of the lies that I’ve allowed myself to believe over the years mostly out of my own mind that I’m not beautiful or not attractive or not a normal version of what’s considered– I’m going to ramble. Basically all the lies that I allowed myself to tell over the years were debunked in an instant by this man who knows the beauty industry better than anyone does and it was kind of like, “Yeah maybe I can do these things.” You’re right, Emily. The value of those kinds of experiences is just at an insane level, and I wish everybody who has ever thought a single insecure thought about themselves, disability or no, could experience what that feels like.
E: Yeah, on the one hand, I don’t want people just trying to placate anyone with a disability and saying, “Oh you’re so beautiful, you’re so pretty,” or whatever, but there’s something about expressing genuine appreciation for someone’s appearance and letting them know that even if they’re not “conventionally attractive” in accordance with the media, that there is something beautiful inside you, outside you, wherever. I don’t mean to get too sappy or cliché, but we don’t see that anywhere. I don’t watch television and see myself reflected back at me or movies and see myself reflected back at me. As much as I don’t want to buy into the fact that I need validation through the media, it would be nice to see it once in a while.
A: It’s so would be nice to see it. You’re so right. There’s a difference in being patronizing and placating someone and being genuine about it. That does make all of the difference for sure.
K: I agree with that.
E: Kyle gets the final say.
K: I don’t know. I’ve never had my picture taken. That whole rant about… like I just sat here like, “Oh, that’s interesting”
E: We’re going to hook you up and get your picture taken.
K: I’m too shy.
E: You met the guy.
K: I know. I’m still too shy that meeting him doesn’t help me.
A: I’m down for a group photo shoot.
E: There we go, group photo shoot.
K: Yeah, okay, right after I get my Accessible Stall tattoo.
E: Yeah, you’re getting… what episode did we say you better get a tattoo of the Accessible Stall?
K: The identity one, the one where we got these sweet ass microphones.
E: Right, basically what’s going to happen is the second we hit a certain number of listeners or something like that, you’re getting the Accessible Stall tattooed all over you.
K: Yup.
E: All over.
A: I can’t wait.
E: And then we’ll take a picture with you. No, but it’s not really a picture taking thing. It’s more just like, I would love if there was better representation of disability as beautiful or attractive or desirable in the media. There are definitely people who are breaking the mold right now. Someone who I think is really awesome is this woman Julian Mercado. I believe she has Muscular Dystrophy, but she modeled for Beyonce’s website, like freaking Beyonce. Also she did a Target commercial, and let’s be real, I love Target. I freaking love Target.
A: And also Winnie Harlow who is a supermodel and she has a Vitiligo.
E: Oh yeah.
A: So beautiful and she has landed some really prominent campaigns. There are definitely boundaries being broken and strides that are being made towards people who are being different seeing their own selves represented, and I’m super glad that we’re getting to that point finally.
E: Yeah, we were going to make it there eventually, but no, it’s so true. I just want to see more of that. I wanted to be less of breaking the mold and more of the norm.
A: Exactly.
K: Someday, hopefully in our lifetime.
E: That goes for anyone with a visible disability being represented in the media. It’s not just women in the media. It’s really anyone. I’d love to see more disability–
K: You said visible [0:45:00 crosstalk].
E: Well…
K: No, it’s okay, you’re right.
E: No, you’re actually right.
K: No, you’re right because there are people that look like me in the media.
E: No, you’re right that it doesn’t fit your disability description.
K: What I am saying is it doesn’t have to. It has to fit yours.
E: It’s a tough one because having visible disabilities be visible in the media is I think one of the necessary steps to acceptance, but I definitely don’t mean it to discount hidden disabilities or invisible or non-visible disability. I just think that sometimes the public needs those physical indicators to get the message and drive it home unfortunately.
K: It’s not unfortunate. If you can’t see something, how do you know it’s there?
E: Well, yeah, but still if there was a way to represent people with invisible disabilities that wouldn’t totally objectify them, that would be great too.
K: Yeah, but maybe.
E: Anyway, I think we have pretty much hit on all the points that we were hoping to hit on. I’m really, really glad that we had Ashley with us because sometimes I think three heads are better than one or two as the case may be.
K: I would agree.
A: Well, I’m glad that you all invited me. It was a lot of fun.
K: Of course, anytime. It was really fun.
E: Seriously, come back all the time.
K: Let us know.
E: Could you say it was really fun any more enthusiastically?
K: No, that was as enthusiastic as I get.
A: Kyle, I got to say you’re like lackadaisical monotone tone is perhaps my favorite thing.
K: No, but that’s not to say I wasn’t enthused to have you.
A: [0:46:41 inaudible], I’m so serious.
K: I know, but don’t let my lackadaisicalness make you think for a second that I wasn’t excited to have you.
A: Oh, I did not even entertain that thought at all.
K: Yeah, it was great. You’re great and we loved it, and hope you come back soon.
A: Yeah, for sure, just let me know.
K: But before we go, we have to do our final takeaways.
A: Oh of course.
E: Oh my God, we have to. But then I also have to ask you the question, was it good for you, because it was good for us?
K: That was great. I learned so much about curling irons today.
E: Did you though?
K: Yeah, I learned from just hearing you guys talk that they get unreasonably hot. I just thought that they get hot enough, but that’s not true. They get way past hot enough.
A: Yes.
E: They’re dangerously hot.
K: Anyway, final takeaways, go.
E: Oh my goodness, okay. I think I have too many or maybe I don’t have any.
K: Pick your favorite.
E: Someone else go.
K: My final takeaways is you shouldn’t need external validation for your body because it’s yours, but sometimes it’s nice and you deserve to be represented in a world that has quite frankly very unfair representation for most people. You do you, man! Love yourself and all that jazz, and find shoes that fit. It’s a blessing from God. I don’t know, I just thought I’d throw it all the words that I knew in that sentence.
E: Oh my goodness. Okay, I don’t even know how to follow that up. That was just the gem of wisdom you dropped right there. It’s okay not to be at peace with yourself and it’s okay to feel frustrated when you don’t see yourself reflected back at you in mainstream media, but at the same time, you’re really not so bad. We’re all really not so bad, so don’t hate on yourself so much. I’m going to take my own advice.
K: You’re the only you you’ve got. Oh my God, I just said that. Can somebody please kill me?
E: Oh my God, you’re so inspirational. Kyle, you’re inspiring me.
K: Thank you.
A: I think the only thing that I can add to all of that wonderfulness is, you’re just beautiful, simple as that, so own it.
K: Oh my God, that was so concise.
E: She’s better at this than me.
A: No.
E: Well, cool. Good talk, everyone. This has been awesome. See, we’re still figuring out the mechanics of having a guest on the show, as you can probably tell. Anyway, yeah, we’re super glad that we had Ashley Harris on with us today. Just thought I’d say your last name again because all of our millions of fans are going to want to go look you up after the episode.
A: Oh boy.
E: Yeah, I think that is officially a wrap. I’m Emily.
K: I’m Kyle.
E: You just listened to another episode of the Accessible Stall.
K: Bye.
A: Bye.