Welcome to the first ever Criptiques Podcast. On this episode, I talk with Criptiques contributor and Words I Wheel By blogger, Emily Ladau. We talk about language, disability activism, growing up with a disabled mom, and the Criptiques anthology.
Hi, my name is Caitlin Wood and you’re listening to the Criptiques podcast. Today my guest is Emily Ladau who’s a Criptiques contributor, and also does the blog WordsIWheelBy.com. You can find more information about Criptiques at Criptiques.com and visit us on Facebook.
Caitlin: Alright, well welcome to the Criptiques podcast. My guest- my first ever guest today- is Emily Ladau who’s a prolific blogger and disability activist. She does the blog Words I Wheel By and she’s also a Criptiques contributor. So welcome, Emily.
Emily: I’m so glad to be here, thanks for having me.
Caitlin: I’m so glad to talk to you, how’re you doing today?
Emily: I’m doing well, y’know, I was just working on reading Criptiques right before we started talking. I’m already halfway through, I’d be totally through if things weren’t so hectic but I can barely put it down.
Caitlin: Oh excellent!
Caitlin: So you wrote a really terrific essay in Criptiques that I wanted to ask you about. You wrote a pretty personal but also political obviously essay about how you don’t identify with people-first language.
Caitlin: So I kinda wanted to just get your perspective on that, see what your thoughts were and sort of how you came to that position.
Emily: Umm so basically I didn’t even know about person-first language until it was introduced to me in an academic environment. I had just kinda switched back and forth between ‘disabled person’ and ‘person with a disability’ as a matter of changing up my language, not because I was really giving any thought to it. And then when I heard this concept of putting the person before the disability- y’know initially I was like ‘ok, maybe I understand this.’ But when I thought about it more, I realized so much of the ideology that’s supposed to be behind person-first language actually seems contradictory to its intentions because you’re saying you want to see the person as a whole person. But if that means you have to put the person before their disability and somehow sidestep their disability or look away from their disability as though it’s not as important as the rest of their identity, then I think you’re possibly denying people a chance to choose their own identity. You know I think for many people disability can be the same thing, it’s something you come to embrace. For me it’s such a key facet of my identity that I don’t want it to be secondary to me.
Caitlin: Have you gotten much pushback on that?
Emily: Yeah. You know it depends on the person and also depends on how much of a chance I have to articulate my point of view. You know I know plenty people in the disability community who prefer person-first language of their own accord and I respect that because as the title of my essay in Criptiques says, ‘I get to decide what you call me,’ and they get to decide what they’re called as well. So if someone else wants to be called a person with a disability that’s their preference. But it’s when people who are not disabled, who don’t identify as disabled try to tell us that there is a ‘right way’ to identify ourselves then the situation becomes a little sticky. And that’s where I’ve gotten the pushback, it’s people from major organizations and I know that they mean no disrespect when they ask me to use person-first language. But I tell them, ‘I’ve lived my whole life with a disability and it’s a part of me so you are putting me first when you call me a disabled person because that’s how I choose to identify myself.’
Caitlin: Do you find that you get more pushback from nondisabled people or from other disabled people?
Emily: Umm… I’d say it’s about equal. I’d say disabled people are more amenable to seeing my perspective. You know, for that matter if I have a chance to explain it to someone who’s not disabled then you know, they take the time to consider it too. Some people are just firmly set in the use of person-first language. And like I said, I know people are trying to do it for good reasons but definitely the pushback that I get actually seems to be more from the nondisabled community.
Caitlin: Yeah that’s been my experience as well and like you, I think people have a right to refer to themselves in any way they want to. but what’s interesting to me is that in my experience, I’ve had nondisabled people sorta come at me upset that I refer to myself as a disabled person or refer to other people as disabled people. And then when I try to explain the Social Model, or the reasons why ‘disabled people’ is actually accurate, they either don’t listen or they say ‘oh ok but I’m gonna use people with disabilities.’ There’s just this very entrenched notion that to claim yourself as a disabled person or to refer to other people as disabled is somehow negative or offensive.
Emily: Yeah and I think that’s exactly where people don’t realize that their attempts at using person-first language is actually buying into the stigma that the disability community has been arguing against in a lot of ways. And another thing is you mentioned the Social Model and of course there’s the Medical Model and people don’t learn things like that in a classroom unit or school, so in order to back up a position like this you have to really be able to launch into a pretty detailed description so I think that’s where we get stuck sometimes as disabled people with the pushback. Because there’s so much behind the reasoning of how we refer to ourselves that – I’m not saying people can’t grasp it, I’m just saying it is a lot to grasp.
Caitlin: Right and it’s something that most people are completely unfamiliar with because you’re right, they don’t teach disability history in schools or the disability rights movement, which brings me to my next question. How did you become involved with disability rights?
Emily: So that’s interesting. I touch on it a little bit in my essay but basically when I was growing up I was mainstreamed so from kindergarten all the way through high school, I went to a public school surrounded by kids who didn’t have visible disabilities and I spent a long time trying to be this version of myself that acknowledged my disability but tried to pretend it wasn’t there most of the time. It was very complicated, I guess you could call it a public school identity crisis or something. [laughter] But then when I got to college I sort of realized there was a bigger world out there than the suburban bubble I’d grown up in and a lot of that world involved taking action against injustices to the disabled community and I was taken by it. You know my original plan was to be a high school English teacher but I realized there’s a bigger world out there and teaching’s a wonderful profession but what if I could push it a little further? So I started kind of digging deep when I was in college and got lucky. I kind of fell into a really awesome community of people along the way. So I wouldn’t go so far as to call it an epiphany or revelation but definitely something inside me just said ‘you’ve lived your whole life with a disability, you’ve seen the discrimination, you’ve seen the stigma, and if you have a chance to do something about it you should do something about it.’
Caitlin: Were there any books you read or people you met that really pushed that?
Emily: I’m trying to think… You know this might be cheesy but I think the people that initially pushed me in the direction of advocacy were my friends and family. Maybe that seems like a stock answer but for me it’s so true. People were calling me out for being an activist- you know calling me out in a positive way- for things that I didn’t even realize I was doing, just things that had became a habit to me. And one of my friends said ‘it’d be really great if you find a way to make advocacy some sort of a career.’ And my parents said ‘we can see you’re really passionate about this and that you really want to make a difference so why don’t you go for it?’ So they were the initial impetus for it and then I kind of happened upon more mentors and connections as I got more involved. Really my friends and family started the whole thing so I owe them a thank you. [laughter].
Caitlin: So when you were in college were there many other visibly disabled people on campus?
Emily: No not at all. Interestingly enough, the few visibly disabled people- there was such a divide you know, we didn’t really hang out or associate. I mean on the one hand you don’t wanna have people say ‘oh you should hang out because you all have disabilities. You must have this major thing in common so therefore you’ll be best friends.’ So you know, no one tried to push us together or anything like that but nor did we all come together. Again I had the majority of my friends were nondisabled so… I spent so much of my time explaining my logic and my theories to people who had no experience really in the world of disability. So I guess that was like my crash course into what it was going to be like in the real world.
Caitlin: yeah I had a similar experience where I was kind of the token, at least initially in college. And I went to a very very small college and was definitely ‘the wheelchair girl.’ So it was definitely an interesting experience and as I progressed through college there were a few more disabled people- you know visibly disabled, there were a lot of people with invisible or nonapparent impairments. But it was a very interesting experience for me as I went through college and a few more people with visible impairments came in and there was definitely a tension there. I could sense that they were very hesitant to try and talk to me, and also that was part of the school I went to, it was very antisocial and strange. [Laughter]. But I think that there is – especially for people who are not familiar with the disability community and don’t have that support system – there can be this anxiety when you’re around other disabled people. I think because you get so much attention as a disabled person when you’re by yourself that if you have anxiety or you’re not really into claiming that as an identity then surrounding yourself with other disabled people, it attracts so much attention.
Emily: Yeah I’m sitting here nodding my head at everything you’re saying because it’s so true. I was definitely guilty of that when I was younger, if you were disabled I wanted you to stay as far away from me as possible, which is also kind of silly because my mother and my uncle have the same disability that I do. So by default I’m always around disability but I guess it’s different when it’s your mother. But when it was peers I didn’t want anything to do with it for awhile. And then… I dunno something just shifted and I thought ‘it’s a hard truth to admit but it’s really hypocritical of me not to accept being around other people who are visibly disabled when I want other people to accept being around me. So that was definitely a shift in my mentality. I mean now I’m around disabled people all the time, I can’t get enough of it, because there’s this dynamic there that’s incredibly exciting and unique that you don’t really get with my nondisabled friends. No knock against them, of course I love them.
Emily: You know what I mean?
Caitlin: Oh yeah. It was my turn to nod in agreement with what you were saying.
Caitlin: And it’s interesting that you had a disabled mom and yet you still, like most every disabled person, you were raised in a culture that’s completely ableist so of course you’re going to internalize that. and it takes a lot of work to move past that and to recognize the beauty in disability, and to have this incredible community, and artistic community that we’re a part of. So it’s interesting that you had a disabled mom. Do you remember sort of realizing that she was disabled? That realization growing up?
Emily: umm… You know I think it started to really become apparent to me as I got older and became more conscious of the comments we’d get when were out together in public. Because later in my life my mother started using a wheelchair, not full-time but part-time. So the two of us in wheelchairs and my dad who doesn’t have a disability and I’m an only child so the three of us go out, I mean the comments we’d get made me realize ‘oh okay we’re kind of a little bit of a circus. ‘
Emily: And even more so on the occasions when my entire family gets together I mean we might as well be our own little wheelchair convention. [laughter]. But I guess I just- again other than the fact that she’s my mother- I had no real exposure to tons of people who had disabilities growing up. So I had my mom who had a disability and the rest of my entire community, I mean it would be unheard of to have a mother/daughter with the same physical condition.
Caitlin: Mmhmm. Can you give me an example of some of the comments you all get when you go out in public?
Emily: most of them are just people trying to be funny.
Emily: [laughter]. So… Which one of us is gonna win the race in our power chairs, or we’re causing a traffic jam or something like that. But I think the one comment that really resonates with me and honestly I don’t even remember it, it’s just something I’ve heard as a story from my mother. You know my parents took me to some kid event when I was young. A woman was sitting behind me and my mother and even as a young child it was apparent that I had a disability. And so this woman said in that ‘I’m whispering but saying it loud enough so you can hear me kinda voice,’ she said ‘look at what that mother did to her child, she must feel so bad.’ And umm that…
Caitlin: Wow. My jaw just dropped.
Emily: Yeah that sticks with you. And again you know I wasn’t even old enough to hear the comment but people just don’t think before they talk sometimes, most of the time unfortunately. And it has stayed with my mother and I, comments like that.
Emily: So it’s rough and I don’t think people believe me when I take the time to say I don’t begrudge my mother. I mean how could you begrudge something that was purely the work of nature? But that’s always added a level of complexity to my disability identity as well.
Caitlin: yeah I can imagine. And it’s interesting because by far the majority is, for most disabled people they’re the ONE in the family, they’re the sort of alien, so I can imagine that would also bring complexity to your mother-daughter relationship. Mother-daughter relationships are complex inherently within themselves but you would also have this shared experience.
Emily: yeah it’s definitely a unique bond that we have. I mean both my parents I love them to pieces and as for my mother and I we connect on a level that other people just don’t understand because we share everything down to the exact same diagnosis. And I hate to use diagnosis as it brings us back to the Medical Model but my point being that that’s really something deeply personal that we share. I actually consider myself lucky especially since I’ve embarked on advocacy more. My mother and my father too, I never want to leave him out of it, but my mother especially has been focused on working with me the whole way in trying to understand this new generation of advocacy that’s kind of come about.
Caitlin: Yeah I bet. I’m sure she’s incredibly proud of you too.
Emily: oh you know, she’s a mother what can I say? [laughter ]
Caitlin: So if I were to ask you what’s the best and worst thing about having a disability, what would you say?
Emily: So the best thing hands down is the community. I mean, even the fact that you and I are talking right now. It boggles my mind because you know, I know you know this story but I’ll just repeat it so that other people know that the only reason I was able to get in contact with you and learn about Criptiques was because of Cheryl Green who’s also in the book. And she stumbled across my blog one day, wrote me an email and we started talking and then she said ‘hey I’m contributing to this project, Criptiques, you should write for them.’ And I had heard about the project but I had thought maybe I wouldn’t make the deadline or they’re not gonna want my work, you know I was in a self-doubting mode. And she said ‘no go for it!’ And she connected us and it was a demonstration of just how big but also how small the disability community is. So that’s my favorite thing.
Caitlin: yes, Cheryl Green is awesome. She does several blogs. She does the project Storyminders and the blog Who Am I to Stop It, so people should check that out as well.
Emily: All highly recommended.
Caitlin: okay so now the bummer. What’s the worst part?
Emily: This is something that I’m only recently admitting to myself but I think the worst part is what we have to keep to ourselves in order to maintain a public image. So on the one hand the disability community is fighting so hard against the stigma that we are objects of pity, so then we have to in my opinion, overcompensate and say ‘we’re making it we’re doing just fine.’ But then if we show it too much then we suddenly become heroic just for existing. So it’s a hard balance to maintain and there are days when things just kinda suck around here. I’m sure it’s like that for everybody and especially for people with disabilities I don’t think it’s a generalization, I think it’s pretty accurate to say that we all keep that to ourselves and try to push through it just a little bit just to maintain the public image that ‘no we’re not objects of pity’ and therefore hide a lot of our experiences with emotions. And I mean this to the outside world, I don’t mean this in the disability community, I think I’m lucky in that I can be relatively transparent most of the time. I mean, you can tell me if I’m not making sense.
Caitlin: No you’re making perfect sense. And I would agree, I think particularly if you do have a visible impairment and you’re out in public, it’s a different experience then when you’re at home and you’re comfortable. And out in public there’s a pressure to present in a certain way because people are watching you. And they’re not only watching you, they’re essentially making all kinds of assumptions about you as you are the representative of an entire group of people. So when I go out as a disabled woman I’m not just Caitlin, I’m Caitlin who is representative of every female in a wheelchair.
Emily: yeah there’s that generalization. I think it happens with all different kinds of identities. I think it happens with skin color or race or religion or sexual orientation. I think it happens all the time but especially in the case of disability. For some reason so often there seems to be a mentality of you’ve seen one person who uses a wheelchair then somehow you’ve seen them all. It feels like somehow you’re always a poster child for something.
Caitlin: Right. Or that because you’re in a wheelchair you also must have the same condition their friend has who also uses a wheelchair.
Caitlin: I get that a lot. So let’s talk about your blog. You do a wonderful blog wordsiwheelby.com. So when did you start this?
Emily: I started this just last year, August 2013. And I did not know what was going to happen with it. I think about my first post and I had thought ‘oh maybe my grandma will read it,’ and I was inspired to start a blog after my summer internship last summer through the American Association of People with Disabilities. We were assigned mentors and things like that so I was connected to someone who had a blog of her own and she suggested I start a blog of my own. And I thought it sounded like a fun idea. You know from the time I published my first post back in August to now, it’s been taking off slowly but surely. And it’s been how I’ve been meeting people and learning new perspectives.
Caitlin: So what’s next for you?
Emily: I don’t quite know and I don’t say that in a ‘I don’t know what I’m doing with my life sorta way,’ just that I’m really enjoying where I’m at with writing and trying to keep projects going with that and it is possible that I’ll return to school and focus even more on disability. But for right now I’m working on developing professionally in terms of writing and hopefully getting into more public speaking, more than I do already. And then my ultimate goal is to end up working for an advocacy organization so… But I’m 22. So it’s exciting to me that there’s still a lot of potential out there.
Caitlin: Yeah, you’re still very young and you’ve already accomplished a lot. Maybe you could start your own advocacy organization.
Emily: the thought has occurred to me, let me tell ya. I’ve been doing a little research into how to start a nonprofit organization so you never know what could happen. But right now the exciting thing is that I’m sitting here looking at Criptiques on my table. And that was a good moment for me. That was something I was excited about that I could get myself in a book less than a year out of college. [laughter].
Caitlin: Wow that’s awesome. [laughter]. Yeah I’m so glad you’re in there. Your essay is fantastic. And what’s interesting, going back to the whole language thing. Disabled people have been talking about this for so long and yet it still is something that a lot of people just aren’t familiar with.
Emily: yeah and I think another thing that’s awesome is putting this in an accessible book format makes it more possible to branch out to the mainstream, which is really the goal because even though this is showing me a lot of new perspectives, I can really see this book benefitting so many people so I even recommended it to an old professor who teaches a class on disability.
Caitlin: Well thank you.
Emily: of course! PR!
Caitlin: Exactly. You can buy Criptiques on Amazon.com FYI. And please do. I am also trying to figure out places to send it so if you have any other ideas let me know.
Emily: Oh yeah this could be exciting. We’re gonna make it a movement.
Caitlin: i would love that and I would love to get it to disabled people who need it. Because there are so many disabled people who are completely unfamiliar with crip culture, and with the idea that they’re not alone. And that there are people who share these ideas and who can support them.
Emily : oh yeah and I’ll say that even though I’ve immersed myself headfirst in crip culture, umm I needed this book too. Because you always want to know that you’re not alone and it doesn’t matter how involved you might be in something. already I said I’m halfway through the book and I find myself nodding along and saying ‘Yes! Someone is saying what I’ve been thinking and I’m not the only one thinking it!’ So I can only imagine what good it would do for people who haven ‘t been introduced to crip culture yet.
Caitlin: Yeah exactly. I can only think about what it would’ve been like if I’d had a book like that growing up, how that would’ve changed my self-esteem, how it could’ve been improved or just feeling like I was connected to something that was cool.
Emily: oh absolutely. And forgive me if I’m making you repeat something, some people might already know but I feel like it’d be so interesting to know where you even hatched the idea for the book?
Caitlin: so let me see if I can even remember because it’s been such a long process. But you know, essentially I really wanted to promote the work of people in the disability community and crip culture because I feel like I’m privy to so much creativity and ingenuity and interesting art that most nondisabled people don’t know about and a lot of disabled people don’t know about. But there are people in crip culture doing really incredible work. So I felt like I know all these people, or maybe I don’t know them but I know their work and if I could just put it into one place it’d be really powerful. So I think that’s where it came from, you know just localizing so much of this creativity that we have in our community. And once you put it all together you can really see just how rich our culture is. So I wanted to promote that but also other disabled people because you know, if you’re not in academia you don’t really get published. And I’m not in academia any more and I don’t really plan on going back. But I felt like there’s so many people I know who really deserve to have their name in print, and deserve to have people know about their work. And just cause they’re not getting a phD, it doesn’t make their ideas less legitimate. So I really wanted to highlight the disability community and I say it in the book, ‘this is a book by crip culture, for crip culture,’ but it’s also for people who don’t know what that means. And I feel like I learned from editing the essays, there were perspectives that I hadn’t thought about. So I’m still learning too.
Emily: that’s the awesome thing. I think back to my time in school and every single book I was made to read and the anthologies and chapters and essays and pages and pages of things I went through. And rarely was the disability perspective presented. So I can see this book being a touchstone for expanding disability studies and including crip culture in disability studies so that’s why I was excited about it. [laughter]
Caitlin: Yeah, same here. I really hope that people will use it in classes and I’ve had people tell me they’re putting it in the disability studies libraries at their college campuses so that’s awesome. But I’d like to reach people who have no idea what this even is.
Caitlin: So if you have any ideas let me know!
Emily: Yeah, i think that goes for everyone listening, gotta get inventive with it. I think it’s exciting because it’s kind of grassroots in a way and has the potential for so much growth. That’s why things like this excite me. And I’m looking out my window wondering ‘does the person across the street know anything about crip culture?’ And how can you pass that on to your neighbor both literally and metaphorically? [laughter]
Caitlin: yeah I’d say it ‘s definitely grassroots and Criptiques is awesome but it’s also- by no means does it encapsulate everything about our culture or every perspective. And my goal too is that people will see this book and then they’ll do their own book. I mean it’s a tremendous amount of work and I had never done anything like this so I learned A LOT but I am hopeful that other people will see this and see this is something that should happen. We should keep promoting each others work like this.
Emily: yeah I think the exchange of ideas and the chance to put so much diversity in one place between the covers is an exciting thing. And I wouldn’t be surprised if anthologies continue to pop up like this. What I really like about this one is it’s so raw and real and that’s what I’ve been liking. No one’s holding anything back. And that was something that for a long time was a struggle for me , I held way too much back and I’m realizing the value of saying what’s on your mind. Especially with this book now because I mean people have, I say inspired not at all in the cliche way like what we might think but inspired me to expand how I express myself, which is why I’m looking forward to finishing it actually.
Caitlin: Fantastic. [laughter] Well Emily it was so good to talk with you. Thank you so much for being my first guest, that was very exciting for me.
Emily: yeah this was so much fun. I can’t even wait to see where this podcast goes, I can’t wait to see who the next person on is, and I’m just glad to be a part of this.
Caitlin: well thank you so much. You can buy Criptiques on Amazon.com and go to Emily’s website at wordsiwheelby.com