Demystifying Disability

Published April 19, 2019.

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Aminatou: Welcome to Call Your Girlfriend.

Ann: A podcast for long-distance besties, everywhere.

Aminatou: I’m Aminatou Sow.

Ann: And I’m Ann Friedman. On this week’s agenda, we are talking about disability. Or rather, more accurately, we are learning about disability and how we — as in the two of us — can be better allies. So today we welcome Kelly Dawson and Emily Ladau. They’re going to take over today and specifically talk about their experiences with disability.

[Theme song plays]

Aminatou: Hello, Ann Friedman.

Ann: Hello, hello. How you doing over there?

Aminatou: You know, I’m having some gnarly sinus stuff so I apologize for my — how I sound already. The show must go on.

Ann: I’m here in awe of the fact that you keep showing up, and also in awe of the fact that we are both here and doing this thing, despite being like in the intense last third of our book-writing process where it feels like — I don’t know how you feel. I feel like I’m chained to a Google doc.

Aminatou: 100 percent. Like chained to own brain that is chained to a Google doc that is chained to my arms typing. That’s how I feel.

Ann: Layers of self-imprisonment [laughs]

Aminatou: Oh my god. Book jail. It’s real.

Ann: Well, related to book jail we have a favor to ask of all of our listeners. Which is that the more and more our brains get sucked into this book process, the more we are looking for some help as we put together future episodes. Namely, questions from all of you and prompts for things you want us to talk about it. While you can always email us, our preference is you leave those questions as voicemails. And our voicemail is 714-681-2943. Which is basically 714-681-CYGF.

Aminatou: We will not use your name unless you tell us that it’s okay to. Just as you’re leaving the voicemail be aware of that.

Ann: Ask any kind of question. We tend to like questions that are speaking to some kind of bigger issue. Like maybe it’s something that you can’t stop talking to your friends about. Generally the question of “OMG, what do I do with my life” is a tough one [laughs]. Um, but things are speaking to like something more direct that you feel unresolved about, those tend to work really well. And we are appreciative of any help you all want to give us in directing our future episodes, because, Lord knows, our brain are mush and we aren’t directing much of anything except for this book.

Aminatou: I know, thank you for letting us borrow parts of your brain. It feels like a real indulgence.

[Music plays]

(3:09)

Ann: So, on this week’s agenda, we are talking about disability. Or rather, more accurately, we are learning more about disability and how we — as in like the two of us — can be better allies.

Aminatou: So, as with any issue our there, there are a ton of activists, there are a ton of resources, there are a ton of books. There are just like many ways to frame this conversation. One way that we thought that would be really helpful and still in the spirit of CYG, instead of us doing an interview where we talk to someone, we thought a better use of our platform would actually be to let two amazing people guide this conversation because it’s their lived experience and we hope that it resonates.

Ann: Yeah, so today we welcome Kelly Dawson and Emily Ladau, two incredible women who have a lot of smart things to say about all kinds of topics. They’re going to take over today and specifically talk about their experiences with disability. And we’re going to let them introduce themselves.

(3:57)

Kelly: My name is Kelly Dawson. I am a writer and editor based in Los Angeles and I mostly write about interior design and culture, but I have written about disability for Vox and MyDomain. And for the purposes of our conversation, I was born with mild cerebral palsy and it mostly affects my legs.

Emily: And I am Emily Ladau. I am a writer, a disability rights activist, an editor, a podcaster. I do a little bit of everything. I'm the editor-in-chief of the Rooted in Rights blog and I also podcast about disability. And I, for the purposes of this conversation, also have a physical disability called Larsen syndrome which is a genetic joint and muscle disorder.

Kelly: So Emily why do you think it's important that we are talking about disability?

Emily: I have learned over the years that disability is not on everyone's radar or even most people's radar and that there are a ton of assumptions about what the disability experience is really like. So today we're going to chat a little bit about some of the misconceptions that people have about disability and some of the ways that people interact with people who have disabilities and basically just give everyone the inside scoop on what it's like to be a person with a visible disability existing in the public world.

(6:19)

Kelly: [Laughs] Yeah, let's talk about all the things or as much as we can right now. So according to the World Bank about one billion people in the world have a disability. That's 15% of the world's population. And in America the CDC reported last year that one in four Americans have a disability. So basically people with disabilities are the largest minority in the world.

(6:43)

Emily: But of course representation does not indicate that at all. There's a really long history of stigma and stereotype when it comes to disability representation. So if you look really, really far back there are things like freak shows where people with different types of visible disabilities were basically put on display for people. Then you have stories like the Elephant Man. You have a long history of institutionalizing disabled people, often for their differences in the way that they look. And you go all the way to the present day and we're still pretty much doing this, just this time on modern television shows and movies.

Kelly: You know, obviously as much as we can talk about all of the historical aspects of having a disability and, you know, we could write a dissertation basically on disability representation, what we really wanted to talk about today is how those stereotypes impact us on a personal level.

(7:50)

Emily: I think that now is as good a time as any for a disclaimer because although we both identify as having disabilities the really important thing to remember is that we're talking about our own personal experiences. So we can't speak for the entire group but we're going to do our best to get everything that we say as right as possible.

(5:58)

Kelly: Yeah, perfectly said. I totally agree. Okay, so because people can't see us right now I think it's good to start off with a sort of visual idea of what our day-to-day lives are like and how we move about the world. For me I think, you know, I have the type of cerebral palsy where my joints tend to tense up and it's hard for me to relax once that happens. So, for me, I have to find a balance between either moving but not really moving too much. I've learned that within about 30 minutes is when I need to sit down and rest. Basically [laughs] over time that -- those minutes kind of accumulate so I have to be aware of how much I'm walking, what type of surface I'm walking on, if there are curbs around, if there are stairs around, if there are people around, and how often I am doing lots of walking. What's it like for you?

(9:18)

Emily: So it's definitely different for me in that I cannot walk at all. I use a wheelchair full-time and so I am not so much worried about the physical exertion of getting from place-to-place but rather the mental energy that it takes to plan every single move that I'm going to make. So, can I get from point A to point B? Will the transportation that's available along the way be accessible to me? Will there be broken elevators? Will there only be stairs?

(9:50)

Once I actually get to the place that I'm going is that place going to have stairs? If it doesn't have stairs can I go to the bathroom once I get inside? So for me it's a lot of emotional labor and just a lot of planning how to get somewhere.

Kelly: Yeah. Yeah, so like for me it's like a minute-by-minute planning and for you it's like you're trying to plan as much as possible in advance.

Emily: Yeah. I pretty much always say that spontaneity is for the able-bodied because it doesn't work for me.

Kelly: [Laughs] Yeah, and it does for me, but a lot of careful . . . a lot of careful movement. So, okay, so after all of that planning then the fun really starts because then we have to deal with how non-disabled people interact with us when we are out in public.

(10:44)

Emily: Yeah. So once we finally get to where we're going we have all of these very interesting interactions with non-disabled people and they say a lot of interesting things to us. I know Kelly you have told me some fun stories about that.

Kelly: Oh my gosh, I have so many stories that I could choose from. [Laughs]

Emily: [Laughs]

Kelly: Like on a . . . it really happens so often where I really could just go on and on. The one example that always comes to mind is something that happens pretty regularly and it's when I'm at the grocery store. [Laughs] And basically what happens there is, you know, I'm just going about my day picking out things in the grocery store. I'll be picking out like a tub of yogurt and a guy will come to me and be like "Oh, oh, that's a good choice."

Emily: [Laughs]

(11:36)

Kelly: Or like I will be at the checkout line and I'll, you know, empty my cart and someone will be like "Oh, great job."

Emily: [Laughs]

Kelly: So -- and it's so weird because obviously I feel like I'm being watched. I feel like people are very aware of what I'm doing in a way that a non-disabled person wouldn't get the same sort of attention and it used to really tick me off. So recently I came up with a way for me to kind of brush off these comments and the way that I do that is to think of my grocery store experience as sort of grocery store safari.

Emily: [Laughs]

Kelly: [Laughs] Where for me it's like [British accent] "Oh look. Like oh, look there. There's a disabled woman."

Emily: A wild Kelly appears.

(12:27)

Kelly: Yes. Like "Look, there's a disabled woman in the wild and like watch her pick out tortilla chips and like salsa. Oh, delightful. Look at her go." It's that kind of thing. I have to make a joke out of it because otherwise I would drive myself crazy.

Emily: Oh it's a total coping mechanism.

Kelly: [Laughs]

Emily: I have this problem too. When I'm out in public, especially because I'm in the chair, everybody thinks that they're the first person to tell me a joke. So they'll be like "Don't go too fast or you're going to get a speeding ticket."

Kelly: Ugh.

Emily: And my mom tells me I should just laugh it off, but I finally started getting a little sassy and being like "Wow, haven't heard that joke five times this week."

Kelly: Oh that would drive me crazy. And it's . . . it's the kind of thing where it happens so often that we do have to laugh off most of it. But there are times of course where it's -- it's too . . . it's too hard to laugh off. Or maybe one person used that line, you know, "slow down" so many times that day where you're like you know what? I'm going to tell this one person to be quiet.

(13:29)

Emily: Yeah. And sometimes people think they are being absolutely hilarious. Like I was once at a hospital and a nurse started making air traffic control noises at me.

Kelly: Oh my gosh.

Emily: And waving her hands. And I was like first of all you're a medical professional and second of all that's just really, really rude. And it kind of stung because it was a reminder that I can't just be out in public without my body being open to someone's commentary.

Kelly: One -- yeah, one hundred percent, that’s how I feel, too. You know, when these comments happen I am reminded of my disability because I'm not disabled at home. I'm disabled when people . . . I remember that I'm disabled when people say those things to me.

Emily: I think that makes a lot of sense. Like I don't go around thinking I'm disabled. I'm disabled. Oh, I'm still disabled.

Kelly: Yeah. [Laughs]

Emily: But sometimes it brings me back into a self-consciousness. Not just a consciousness, but a self-consciousness where I realize that other people are very, very hyper-aware of something that is my norm.

Kelly: Yes.

Emily: And that doesn't mean that I don't want you to just be like "Oh, I forgot you even had a disability." That's not what I mean. Like I want you to recognize that disability is part of who I am but like you don't need to make a thing out of it.

(14:53)

Kelly: Totally. And, people can often say, as a sort of compliment, like "I didn't even think of you as having a disability." And that's not a compliment because it sort of erases that aspect of our lives and makes it seem insignificant when it really -- it's, you know, it's an aspect of our lives. It's not our whole lives but it's not . . . it's not worth forgetting about or erasing either.

Emily: Yeah. There needs to be this happy medium and I feel like that's what people don't necessarily get. And I think it has to do with their own discomfort when it comes to encountering disability in the wild.

(15:33)

Kelly: [Laughs] Yeah. Disability is one of those identities that isn't -- that's very fluid. It . . . if it doesn't happen like it did for us at birth then it really could happen at any point in someone's life. So I think if someone looks at me and sees that disability first, they tend to think of me as someone who is unlucky. And sometimes it feels as if that unluckiness is contagious. Like if they are around me maybe they will also "catch" my disability.

Emily: Yeah. I think that we often serve as living, breathing reminders of the fallibility of the human body and other people's mortality.

Kelly: Exactly.

Emily: And it's just like we don't look at it like that.

Kelly: Mm-hmm.

(16:26)

Emily: But I guess other people do because they forget that disability is pretty much the only minority that you can join at any time and we don't discriminate.

Kelly: [Laughs]

Emily: We're here for you. And I don't mean that as a threat, you know?

Kelly: Yeah, exactly. And because of all the things that people say I think for me I've come up with this elevator pitch that helps people understand my disability in a non-threatening way. I basically just say, you know, I was born with cerebral palsy. I can do most things. The things that I can't do I will let you know. Usually that puts people at ease.

Emily: Yeah. And for me if I don't necessarily get into all the details of my disability I have little phrases that I keep sort of in my back pocket that I'll pull out if there's ever a situation where I feel like people might be uncomfortable.

Kelly: Mm-hmm.

(17:19)

Emily: So a pretty good example is that when I'm using my power wheelchair I often crash into things because I'll be in narrow spaces or I'll just misjudge a turn or whatever the case may be.

Kelly: Mm-hmm.

Emily: And so I've had a tendency, more than I would like to admit, to get myself stuck on a table and just start dragging the whole table with me.

Kelly: [Laughs] Yeah.

Emily: And so when that happens everyone else is looking at me like oh my god, she should be so embarrassed. And I'm like "Don't mind me. I just like rearranging the furniture."

Kelly: Love that line. Fantastic line.

Emily: [Laughs]

Kelly: Yeah. I mean I do the same thing. I -- I trip and fall a lot. Sometimes I just trip, I don't really fall. But I come up with a lot of one-liners to make sure people don't immediately spring into action and make me feel like I frightened them. As people with disabilities you never really know what someone is going to say when you first meet them. So it's just kind of our way of protecting ourselves and lightening the mood.

(18:22)

Emily: Yeah. And I feel like we're pretty much always responsible for doing that, being either the person to address the elephant in the room or the person who is the teachable moment for non-disabled people. So we constantly have to have those one-liners or have that really quick explanation of what our disability is or what we need. We're basically spokespeople in our daily lives whenever we go out and about.

Kelly: [Laughs] Yeah, exactly. And I love the word spokesperson for this work, essentially. In that teachable moment it, it's almost as if my feelings are put second to this person's feelings of understanding what it's like to be disabled. So even if I feel vulnerable, even if I have places to be, or if I'm just not in the mood to have this TED talk, I have to put that aside to make sure that this person feels comfortable in this moment of learning what it's like to have a disability.

(19:30)

Emily: Exactly. And sometimes it comes in the form of a really rude and invasive question and that's when it becomes really difficult. Because lots of people come up to me and they're like "What's wrong with you?" or "What happened?" or "Why are you in a wheelchair?"

Kelly: Yeah.

Emily: And it's like I didn't approach you and say "Why did you decide to wear a blue shirt today?" You know?

Kelly: [Laughs] Yeah. For me if I'm -- if I'm out at a bar people will say stuff like "Oh, you are . . . you are drunk."

Emily: Oh my god.

(20:00)

Kelly: Or "You need to go home." And, you know, I have to . . . I have to say like some sort of silly line to be like "I'm actually not drunk." Or like "You can help with that, buy me a drink," or whatever it is so that I don't feel -- so that my feelings don't get hurt really and so that they don't feel uncomfortable for saying something stupid.

Emily: Yeah. So it's always about the other person's comfort.

Kelly: Mm-hmm.

Emily: But the thing is, I actually do want people to understand disabilities. So that's important to me and I find myself prioritizing that over my own feelings.

Kelly: Yeah.

Emily: But I think that the ideal way I would like to see things handled is for there to be a space where people can talk about disability and ask questions without like putting all of that responsibility on us.

Kelly: Exactly. So do you have any examples of what people can say or how they can act in this environment when they are around people with disabilities?

(21:05)

Emily: Yeah. I mean ideally I would love not to be approached in public with questions about my disability.

Kelly: [Laughs]

Emily: But I'm also aware that you're going to be curious. So sometimes it really is all in how you say things. I mean even saying like "Excuse me, do you mind if I ask what your disability is?" or something like that is a lot better than "What's wrong with you?"

Kelly: Yes, yeah.

Emily: But ideally it's more a time and place thing, right?

Kelly: Yeah. It's definitely time and place. Like I'm not going to be as open to talking to you at the grocery store. [Laughs] But, questions like what you said, you know? "Is it okay? Is it okay if I talk to you about your disability?" or "Is now a good time?" is also a good way to start off that question. I don't think anybody would feel comfortable with the "What's wrong with you?" question. I don't think that leads anywhere besides putting that person on the defense. When you are talking to someone about their disability you are talking to them about something that's very vulnerable so you have to be aware of that person's feelings in the moment.

(22:15)

Emily: Yeah. And it's a part of us too. It's our identity and so, you know, identity is not something to just throw around. And also I find that when people do want to strike up a conversation, especially people that I know pretty well outside of the grocery store . . .

Kelly: [Laughs]

Emily: I've had people say to me "Oh my gosh, you are so inspiring."

Kelly: [Laughs]

Emily: Or "Wow, that must be so hard for you. I totally get it because one time I broke my leg and I had trouble climbing stairs for three months."

Kelly: Yes.

(22:55)

Emily: So it's like no. [Laughs]

Kelly: Yeah, the word inspiring. I get the word inspiring a lot too. It's a tough word. I . . . I think, you know, you can find another word. Not everything -- and I should say too, I understand where people come from when they use the word inspiring. I really do. I think that society tends to give non-disabled people two options when we're talking about disability. And that's either to pity the person who has a disability or to be inspired by the person who has a disability.

Given those two options to use the word inspiring feels like the better plan of action. [Laughs] But, I am just grocery shopping. I'm doing exactly what you're doing. You don't have to put me on a pedestal. I just want to get my chips and salsa. That's all I want. Yeah. [Laughs]

(23:55)

Emily: Exactly. Also excellent choice. I love chips and salsa.

Kelly: Yeah. [Laughs]

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(27:50)

Kelly: When we talk about the ways that people approach us and the tones they use, it's its own category to talk about online dating when you have a disability. Because all of those questions come at you from various people [laughs]. You had a really good story for online dating.

(28:12)

Emily: Online dating is so interesting to me because I used to completely hide my disability and then just drop it on people.

Kelly: [Laughs]

Emily: Like I would crop my wheelchair out of my picture and not mention it in my profile.

Kelly: Yeah.

Emily: And then when I thought things were going well I'd be like "By the way I have a disability. Let's talk about it."

Kelly: [Laughs] Yes. Yeah.

Emily: It was a terrible approach. So I decided to be more straightforward about it. So it's like it . . . I mean I'm in a relationship now but back when I was online dating . . .

Kelly: Yeah.

Emily: I was, you know, putting it out there or I would put a cute little comment like "I live life on wheels." And I found that that was both helpful in that it weeded people out a little bit but also incredibly frustrating in that it opened me up to every kind of invasive question imaginable.

Kelly: Yeah.

(29:00)

Emily: Not the least of which was "So does everything work down there? Like can you still have sex?"

Kelly: Oh my goodness. Oh, that makes my skin crawl. Yeah when I have used these dating sites I would say, you know, I was born with cerebral palsy and it would be very clear on my profile. And I would get very awful comments directed back at me. So as a form of self-preservation I later decided to not -- to do what you said which was to drop that bomb which also leads to those same comments just coming later. [laughs]

Emily: Yeah.

Kelly: Yeah, so it's . . . it's kind of like a pick your poison type of situation. But it's always sexual.

(29:45)

Emily: Yes! And it's like I get it. We're on an online dating site, you know? Sex is a thing that can be on the table. But let's just think about how we ask that question.

Kelly: Yeah, and . . .

Emily: And also that's not the first thing you need to know about me. It's really not.

Kelly: [Laughs] Yeah. I completely agree. Non-related to online dating the question that I get a lot is, well, and it's never really said outright. I think the thing that I deal with a lot is people like to skirt the issue with me. So it's really learning like what people are saying implicitly. It's "Hey, we are going to this place." And then I think the implicit message is can you do that? I have learned to speak in this sort of double-speak too but over time have learned how to be more direct.

(30:35)

So saying very early on in a friendship, in a romantic relationship, this is what I can do. This is what I'm probably going to need help with. So yes, I can go to a concert. Yeah, I probably can go for a "hike." But I'm not . . . I'm not about to do like the Pacific Crest Trail. Or I'm not about to do, you know, more realistically I can't do a hike for more than 30 minutes like I said earlier.

Emily: Yeah, I feel like it's actually really okay for people to be like "Hey, are you up for this? Can you do this? Is this accessible to you?"

Kelly: Yeah.

Emily: But also if you want to be the real MVP check on accessibility beforehand.

Kelly: [Laughs]

Emily: For something like steps, or especially if you've gotten to know a person well and you know that they have limited stamina for mobility, like do everyone a solid and just check if there's a step or check how far the walking distance is.

(31:34)

Kelly: Yeah, exactly. I really love when friends will say like "Hey, we are doing this. Here's what that sort of entails physically." And give me all of the information, all of the expectations of that day. And then I can decide if I actually want to participate. And I am of an age where it's okay if I don't go. I think if I was younger I would have these feelings of like oh, I have to participate. I can't miss that experience of hanging out with my friends. Now I have friends who like do things that I can do. [Laughs] There are also days when, you know, my legs just don't want to walk for half an hour, where I am in pain. And that's okay for me to just sit on the couch.

(32:22)

But yeah, I totally agree. I think -- I think it's good to be as direct as possible while also having that person's feelings in mind. So like the "Can you even do that?" Don't say that. Say, "Is this something you would be interested in?" "Is there anything I can do to help you?" even sometimes helps. I like feeling like I have someone who understands what it's like for me to be out in the world. [Laughs] Out in the wild.

(32:54)

Emily: Yes. And also I like that people who ask me are putting the power back in my hands to make the decision about what I want to do.

Kelly: Exactly, yes. And then it gives me some options too. Like, I know that right now this sounds like a lot of planning but like number one, join the team.

Emily: [Laughs]

Kelly: It does involve -- it does involve planning when you have a disability. And 2) like over time this does get easier. You also learn very easily -- very quickly who your friends are.

Emily: That is so true. And for me I mean I can't really push myself in certain ways just because it's a matter of, you know, can I actually get into this place? But what people will say a lot is "Oh, it's only one step. You can do that right?"

(33:40)

Kelly: [Laughs] Yes, yes. Oh my gosh.

Emily: I'm like no, I really can't. Or they're like "Yeah, we'll lift you." And it's like you can't do that either. [Laughs]

Kelly: I know. I mean sometimes I -- sometimes I'm like okay, go ahead and lift me but that's only if I'm in a situation where it was not presented to me that I would need to put that much physical exertion into that experience.

Emily: Okay. So assuming somebody wants to hang out with you and invite you to their house what should they actually do?

Kelly: [Laughs] This is a really good question. It’s good to say like "Hey, I am thinking of having a -- some friends over at my house. I want you to come. Just so you know there are some stairs leading up to my front door. There is or is not a railing." Or "I live on a -- on a hill, or I live in a neighborhood with limited parking." That way it's easy to plan ahead as much as to getting into the house. [Laughs]

(34:40)

So from there you could even say like "Oh yeah, I have like a parking spot you can park in." And then when you get into the house to also say like "Oh, I do or do not have a dog." Most dogs tend to jump on people. And so that can pose a problem.

I also -- it's good to know too like how many stairs are in the house. You know, sometimes that's overkill. I usually just like to know what it takes to get in the house and then from there I can ask you for a hand if I'm in your house and I can't necessarily move from one place to another.

(35:21)

Emily: Yeah. So for me I can't get into a house if it has stairs but I think that what I figured out is if someone is hosting something at their home I would appreciate a heads-up that it's happening if it's something that they would've otherwise invited me to. And then maybe we can come up with some kind of alternative plan so that I can hang out with them separately or something like that which is not ideal but, you know, I understand houses are not exactly accessible.

If it's something like one step, you know, I might be able to bump my wheelchair up the step if I have some assistance but usually that's not ideal. So whenever possible I obviously like to hang out with people either in my own home or out somewhere that's accessible. But I think the best thing to do is to try to let me make the decision whenever possible but also be kind of sensitive.

(36:20)

Because I recently had somebody invite me to a little soiree at their home and then they were like "Yeah, we're working on getting a ramp so that you can get inside. Blah, blah, blah, blah, blah." And I had my hopes up that I was going to be able to go to this event. And then I got an email the day before, only because I followed up, and the person was like "Oh yeah, the ramp thing fell through, so, sorry."

Kelly: Oh geez.

Emily: So I was like de facto uninvited.

Kelly: Oh my goodness. Yeah, that's not cool.

Emily: And that's not how you handle that.

(36:53)

Kelly: No. Actually I do have a question for you. So when you do go out to a restaurant how would you like people to handle going to a restaurant with you? What's the best way to ask those questions?

Emily: I love when people are like "I double-checked and it's accessible." But if not, it's really helpful for people to give me advance notice and say, "Hey, we're interested in going to XYZ restaurant. Do you want me to double-check if it's accessible or do you want to do it?" And then I'll say "Oh, you know, it's fine. I don't mind doing it." And then giving me enough time to look up online or to give them a call just to find out if I can get into the restaurant.

Kelly: Yeah.

Emily: It's little things like that that make all the difference.

Kelly: Yeah. Just a little consideration goes so far in making me feel comfortable and I'm sure same with you making you feel comfortable too.

Emily: Amen to that.

(37:48)

Kelly: There are questions people shouldn't do. There are actions people shouldn't do in regards to people with disabilities. So, like for instance, people tend to grab me and help like without me -- without my consent grab me and help me somewhere, like up a stair. And it's really jarring to be touched always without just . . . you know, by surprise. So Emily do you feel this way too? Do people just grab your wheelchair and help you -- push you somewhere without . . . yeah.

(38:20)

Emily: Yes. People try to push me all the time and it's actually pretty funny because oftentimes they'll try to move my power wheelchair which without me in it weighs over 400 pounds. So it's a little bit funny to watch them really puzzled that they can't just move me wherever their heart desires.

Kelly: Yeah.

Emily: But on top of that, you know, people love to rest their arms on my wheelchair or otherwise touch me in a way that you would not do if it was someone's shoulder or something like that. And I always tell people "I'm not your coat rack. I'm not your armrest." You know?

Kelly: [Laughs] Yeah.

Emily: Like I'm -- don't touch me. It's an extension of my body, you know?

Kelly: That's a wonderful way to put that. People want to help. People see the obstacle, the physical obstacle, and they think just by swooping me up they're doing me a favor. And that only works if I . . . if I'm aware of you doing that. If you just pick me up without me really anticipating it it's scary. It would be scary for anybody. You can just also say, you know, "Can I help you up the stair?" and offer your arm. That's a much better way to go about it.

(39:25)

Emily: Yeah. And also context is a big thing because if I'm just sitting there minding my own business I probably don't need your help which is an interesting thing that seems to happen when you're a person in the world who uses a wheelchair. People are like "Do you need help?" And I'm like "I'm not really sure what indicated that I needed help because I was sitting still on my phone."

Kelly: [Laughs]

Emily: But hey, thanks anyway.

Kelly: Yeah. Or like "Are you okay?"

Emily: Yeah.

Kelly: The most dramatic -- "Are you okay?" It's like yeah, yeah, I'm fine.

Emily: I'm great.

Kelly: I'm just sitting here.

Emily: Never better.

[Music plays]

(40:15)

Kelly: Right now I want to talk more about the types of books and blogs and websites and podcasts that people can listen to to inform them about disability before they talk to somebody with a disability if that makes them more comfortable. To kind of have a background.

(40:35)

Emily: Yeah. And I think that doing your homework is really important and I know that it sounds like we're putting the burden back on people to learn but hey, we kind of are. [Laughs]

Kelly: [Laughs] Two-way street. Yeah, no, two-way street. Okay, so I am going to start and I'm going to say that people should listen to your podcast! It's called The Accessible Stall. And, you know, listen, subscribe, comment, do all the things. It's wonderful.

Emily: I didn't pay her to say that. [Laughs]

Kelly: She didn't. She didn't. It's really good.

Emily: Yeah, I do have a podcast where I talk a lot about disability issues with my co-host Kyle. But I mean, believe me, there's a lot more out there than just our podcast. There's also a really great podcast by Alice Wong, the Disability Visibility Podcast, and she talks to people from all across the board when it comes to disability and their experiences and their expertise and she gives so much insight into the disability experience. I highly recommend her podcast.

(41:33)

Kelly: Love it. And then I also love Stella Young's TED talk. She basically covers what we've been talking a lot about which is not to be inspired by disabled people simply for existing in the world which is lovely. She does it in a really funny way and it's a . . . it's a great introduction again into what we're talking about here.

Emily: Yeah. And I think it's called I'm Not Your Inspiration, Thank You Very Much. And she has all these really good zingers like no amount of smiling is ever going to get rid of a staircase or something like . . .

Kelly: Yes which I -- which I really want tattooed on me because that's how I feel all the time whenever I see stairs.

Emily: Yeah. I love her.

Kelly: Yeah.

(42:15)

Emily: And then also recommend checking out hashtags on Twitter. I mean disability Twitter is no joke. So there's hashtag #InaccessibilityMeans which I started so I'm being really self-promotional but whatever. Then there's also hashtag #ThingsDisabledPeopleKnow which was started by Imani Barbarin who is a really great black disabled activist. And then also hashtag #CripTheVote which is a really good hashtag to tune into discussions of disability that pertain to upcoming elections and political conversations. And that was started by Alice Wong whose podcast I mentioned and Gregg Beratan and Andrew Pulrang who are two really fantastic disability advocates. So the information is out there. It's not hard to find.

(43:09)

Kelly: Yeah. Yeah, I think the thing to just remember is, you know, in order to learn about this population -- which is again the largest minority in the world you should learn from the people who are experiencing the world as disabled. Which brings us to what we were talking about earlier which is why movies are so problematic. I don't spend my money, don't use my time to watch these movies because of how they make me feel. But Emily I know that you've seen a couple of them. [Laughs] So if you want to talk I think Me Before You is one that we've talked about before.

Emily: Oh my gosh. Well yes, a more recent one would be The Upside with Brian Cranston and Kevin Hart. But if you go back a little bit, Me Before You is the absolute bane of my existence.

Kelly: [Laughs]

Emily: So everybody loves that book. It is like everybody's book club pick with, you know, Kleenex and a container of ice cream. But it's basically a story about a guy who is injured, becomes paralyzed, and decides his life is not worth living and fights everybody on that.

Kelly: Of course, yeah.

(44:18)

Emily: And I watched Me Before You. I read the books. I wrote paper after paper on it when I was in college. Yeah, I just went hard with that because . . .

Kelly: [Laughs]

Emily: That is the absolute perfect example of what not to do when you're portraying disability.

Kelly: Yeah. And, you know, I think if I can think of one example it's Forrest Gump which of course most people have seen. There's this one scene where Forrest is a kid and he has these metal leg braces on. And those metal leg braces are almost identical to the leg braces that I had growing up. So I remember watching this movie with my sister, my mom, maybe some of my sister's friends. I think it was a Girl Scout sleepover. And it's that scene where Forrest is told to run and he takes off and all of a sudden his braces fall away and the metal is flying everywhere. And I remember my mom turning to me and just being like -- in the most loving way possible -- she was like "Kelly, that's never going to happen." [Laughs]

Emily: [Laughs]

(45:32)

Kelly: And I love that because yeah, like you're saying these movies don't do a good job of showing accurate portrayals of people with disabilities. Instead they perpetuate these ideas of feeling sorry for yourself, of someone deserving a gold medal for loving somebody with a disability. It's a problem to say the least. [Laughs]

Emily: Yeah. And so not only does this have an impact on how society views us but it also has an impact on how we view ourselves. And so it becomes this really emotionally fraught issue where there's a constant cycle. You're constantly seeing these negative representations and other people are constantly seeing these negative representations so you feel like that's what you look like to society.

Kelly: Mm-hmm.

(46:26)

Emily: That's what society thinks of you. And that is how society thinks of you because that's all they know. And so then it becomes up to us to continue to fight back against these cliché portrayals and to educate people. So it's just ongoing.

Kelly: Yeah. Yeah, I think it, at least for me, makes me feel like I have to apologize. I have to apologize for having a disability based off of those -- those portrayals and what I've internalized. But I should say too that, you know, there's a new Netflix special out called Special which stars Ryan O'Connell and he is a man who's born with cerebral palsy. And, you know, I didn't actually realize what it would feel like to see somebody with cerebral palsy on television I think within the first second.

(47:22)

So the first second of the show he falls down on the sidewalk, he completely eats it, and I was like oh, I completely relate to this. [Laughs] I know exactly what it's like to fall on my face on the sidewalk. They did not include the dental work that's involved with that sometimes.

Emily: [Laughs]

Kelly: But I haven't finished all of Special yet but I do . . . I do finally understand how personal it is to -- to watch something where something about your own identity is reflected back to you in a very accurate way. It's a . . . it's a nice feeling.

(47:56)

Emily: Yeah. And even though the main character is a gay guy with cerebral palsy and I'm a straight woman with Larsen syndrome it still feels relevant to me. It's one of the most relevant things I've seen in terms of media representation and there's definitely been discussion among the disability community. It's a really love it or hate it show. But on the whole, it is really refreshing to see someone who reminds you of yourself reflected back at you.

(48:25)

Now that we've kind of gone over the what to do, what not to do, what to watch, what not to watch kind of thing, what do we even do from here? Because I always have people say to me "Okay, like you've given me all this great information but I still feel like I'm going to do something wrong."

Kelly: It's okay to not know everything. People without disabilities don't have to know everything about what it's like to have a disability. That's where this conversation can really be instrumental in sharing the weight of what disability means for the person with the disability and for the non-disabled person. It's okay to not know everything.

(49:09)

Emily: Yeah. And I also think that it's really important to point out that we don't think that non-disabled people are somehow inherently bad. And we also think that curiosity is definitely okay.

Kelly: Oh yeah.

Emily: Especially when it's a kid. If it's a kid I will always answer that kid's questions. Because that's how you get rid of the stigma and the taboo around disability.

Kelly: Yeah.

Emily: But I also think that there's so much work to be done when it comes to fully including disabled people in public life without making a big thing about it. And I think the best way that we can get to that point is by listening to the perspectives of the disability community, not acting like you totally get it. But, you know, just taking the time to hear us out and not speaking for us.

(50:08)

Emily: Really passing the mic.

Kelly: Yeah, if you are a non-disabled person, to really listen. And, I do want to say too this conversation doesn't just happen once. Like this is a conversation that'll happen many times as the situations arise.

(50:22)

Emily: Yeah. And as much as there's an evolution of thought around disability there's an evolution in how we think about our own disabilities.

Kelly: Yes.

Emily: So this is definitely an ongoing dialogue.

Kelly: Oh my gosh, yes.

Emily: Also I think it's important to acknowledge that people have been having these conversations for a long time. This is not new.

Kelly: [Laughs] Yes. If you are a person with a disability and you're listening to us talk about our disabilities right now and we seem very comfortable with that, it's because it's taken years. It has taken me a very long time to be able to talk about my disability not only here but with friends, with family, to feel comfortable with myself to really be able to express my perspective in this way. So if you feel like you don't have the words right now don't worry. The words will come with time, with patience, with experience.

(51:20)

And I'm hoping that the more society is willing to listen to people with disabilities the more this conversation doesn't need to take place in this way.

(51:35)

Emily: But in the meantime it's okay for this conversation to be taking place and it's okay for us to be having these discussions. And also shout-out to my fellow disabled people who sometimes get really, really tired of this conversation.

Kelly: Yeah.

Emily: You are allowed to be really tired by all of this emotional labor. You're allowed to be frustrated and angry and things like that. But, you know, at the end of the day I'm of the belief that a lot of the change is going to be a two-way street.

Kelly: Yeah.

Emily: And, so, conversations like these are how we help make that change happen.

Kelly: Exactly. 100%. This is fun. I had a good time.

Emily: Yeah, me too!

Kelly: [Laughs]

Emily: I mean even though it was a little bit of emotional labor talking about this topic, like it definitely brings some stuff up for me, it also feels really good to just be able to talk to someone who gets it and to hope that, you know, it resonates with other people.

(52:33)

Kelly: Yeah. There is no one I would rather carry this emotional labor with than you Emily.

Emily: So true.

Kelly: This was so much fun.

Emily: We're in this together.

Kelly: And thank you so much to Ann and Amina and of course Gina for giving us this space to talk about our disabilities and we hope that you as the listeners learned a lot here. Say hello to us on the Internet. We are there. You can find me on Instagram and Twitter at @atthecrosswalk. I know there are two ats there. Copy editors hate that. But find me there. Say hello. It'd be nice to meet you. [Laughs]

Emily: You can find me on Twitter at @emily_ladau. That's L-A-D as in dog-A-U. Or you can find me on Instagram at emlad729, E-M-L-A-D-7-2-9. Or you can check out my website which is wordsiwheelby.com because I am a millennial and every millennial needs a brand.

[Music plays]

Aminatou: What an incredibly generous conversation from Kelly and Emily. I learned a lot and it’s given me a lot to think about. I’m really— on a purely selfish note, I’m very very glad they did the show for us today.

(53:52)

Ann: Yes. You can also find Kelly at kellymdawson.com. We’ll link to her website and all the ways you can find Emily and listen to her work in the show notes. Also, as sort of a housekeeping note, we at CYG have really made an effort in the past few months kind of behind the scenes to have every episode in our archive transcribed by a human being not like software, so that it is actually reflective, and not like full of typos of what our conversation was. And we are not 100% up to speed in uploading all of those transcripts to our website. But, the archive through last October— if you go to any episode in the archive, there will be a link that says, click to see transcript or click for transcript. You can click that link, you can see the full transcript from that episode. We’re working on getting the October through today transcripts uploaded.

(54:45)

We’re going to make a special effort to have the transcript from this episode available now, so you should be able to go to callyourgirlfriend.com click on epsiodes, find this episode and see a transcript of this episode if that’s something you want to share or point people to. And this is part of a long-term effort to have a new website where transcripts are better integrated, so you’re not having to do a million clicks to get there. Thanks for your patience with our like small little team as we try to do this.

(55:10)

Aminatou: And finally, we want to give a huge huge, huge-huge-huge, ginormous CYG shoutout to Destry Maria Sibley who worked with us for awhile here and we will miss her so, so much. Destry has been our associate producer since June, and she’s moving on to many more amazing projects that we can’t wait to support. We thank her for all her help and can’t wait to watch her star continue to rise.

[Music plays]

You can find us so many place on the internet. callyourgirlfriend.com, Apple Podcasts, Spotify, Stitcher, you name it, wherever you listen to your favorite podcasts. You can subscribe, leave us a rating or a review and tell all your friends. You can leave us a voicemail at +1 (714) 681-2943. That’s +1 (714) 681-CYGF. We’re on Instagram and Twitter @callyrgf. Sophie Carter-Kahn runs our social accounts. Our theme song is by Robyn. Original music composed by Carolyn Pennypacker Riggs. Our logos are by Kenesha Sneed. And this podcast is produced by the amazing Gina Delvac.

Ann: See you on the internet, boo-boo.

Aminatou: See you on Beyoncé’s internet.

[Music ends]