The (In)Visibility of Disability

Megan and Carrie talk to Alice Wong, the founder and Project Coordinator of the Disability Visibility Project, and Nina G, comedian, professional speaker, storyteller, writer and educator, about their disabilities and why the voices of disabled people belong in podcasts.

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Chapters

• 12:45 Interview with Alice and Nina

Transcript

Megan Figueroa: Hi, and welcome to the Vocal Fries podcast. The podcast about linguistic discrimination. 

Carrie: I’m Carrie Gillon.

Megan: And I’m Megan Figueroa. Carrie, you’re about to get on a plane. Well, soon. Very soon. 

Carrie: Yeah soon, pretty soon. Yeah, Tuesday night, taking the red-eye, which I hate, but there wasn’t really a better option.

Megan: Yeah. The red-eye to Boston. 

Carrie: Yeah. So, if anyone is in the Boston area and wants to come watch me on a panel talk about linguistics podcasts, you should come. You can go to soundeducation.fm for more information.

Megan: Very cool. You’ll be on the panel with a couple other people that our listeners might know, so that’s cool. 

Carrie: Yes. I will be on a panel with Ray Belli from 'Words For Granted', Helen Zaltzman from 'The Allusionist', and Gretchen McCulloch from 'Lingthusiasm', and then also Mark Sundaram who will be the moderator from 'The Endless Knot'.

Megan: Very cool. The Endless Knot interviewed us. That was fun. 

Carrie: Yes. That was fun.

Megan: You’re going to see fall colors and stuff. 

Carrie: Yes. It’s going to be a little chilly, not super cold but not warm. It’ll be a nice break because it’s still too hot here. 

Megan: Yeah. I love Arizona, but it’s currently 90 degrees, so I’d like it to be a little bit cooler. 

Carrie: 90 would be kind of okay. It’s hotter than that here. Like 95. It’s too much. 

Megan: Yeah. Well, the desert. 

Carrie: It is the desert. 

Megan: You thanked someone last week and you said a name wrong? Sounds like something I would have done. 

Carrie: Not last week. I don’t know when it was. It was a while ago. Joshua Hillerup, I think that’s how you say it. If I’m still saying it wrong, I’m sorry. That’s what it looked like you were trying to tell me to say it. 

Megan: I like the rising intonation when you say that as well.

Carrie: Because I’m not sure. He says I don’t know the IPA, and I was like, "Yeah. That's fair. Not everyone knows it." But here’s a point where it’s like, "Ah, if only," then I would feel more confident. Apparently, it’s a Danish name, so that’s kind of cool.

Megan: Very cool. No one should feel bad or guilty about ever telling us if we say your name wrong because it's definitely the least we can do.

Carrie: No. Definitely, I want to know.

Megan: The least we can do is say your name correctly. 

Carrie: Also, as a curiosity, I actually want to know.  It’s both selfish reasons and not-so-selfish reasons. 

Megan: Right, yeah. Names are important. 

Carrie: Names are important. We also have to thank everybody from last month. Last month was my birthday month and we asked everybody to support us, and we got a bunch more people. I want to thank Kirsten Baker-Williams who is one of my oldest friends. 

Megan: Oh, yeah she is.

Carrie: Thanks, Kirsten. 

Megan: Hi, Kirsten. 

Carrie: Steve Pollitzer Alles, and I hope I said that right. Shauna Coppola. Kate Kaye, who is another friend of ours, but she only has Kate Kaye here, so I respect that. Janie Lee upped her, monthly subscription by double, so that was nice. Thank you.

Megan: That’s really nice. 

Carrie: Yeah. Emma Manning and Alexander Drechsel, who is from the Troublesome Terps.

Megan: Wow. Thank you. 

Carrie: Two more friends, Miley Lee and Allison Bills. Thank you guys so much. 

Megan: You know, no one did this for my birthday.

Carrie: Well, you didn’t ask. 

Megan: I know. I’m kidding, I'm kidding. Very cool. Thank you all. We’re getting closer and closer to being able to do transcriptions which...

Carrie: Yes. We’re so close. We just need, I think, $35 more, so that would be amazing. Also actually, it’s either Lina Hou or Lina Hou, I'm not 100% sure. I want to say Hou, but she’s at Santa Barbara, assistant professor there, and she's offered to pay for professional transcriptions for two episodes for her own purposes and then also give them to us. 

Megan: Oh, wow.

Carrie: Thank you so much, and anybody else who wants to help us out in that way, of course, we’ll take it. 

Megan: Yeah. I know. @linasigns on Twitter. I feel like I only know people by their Twitter handles. I’m sorry. But yeah, that’s amazing. We know we need them. This is not intentional erasure. It is a money thing. We want to keep indie but there are some things that go along with being an indie podcast like sometimes...

Carrie: Not having any money. 

Megan: Yeah. 

Carrie: Especially for this particular episode that we’re putting out today, I really want this one to be transcribed, so I probably will push it up higher in my queue to make sure it gets out there. 

Megan: Yeah. This is an important episode for sure. 

Carrie: It's very relevant. We're talking about people with disabilities on podcasts and why it matters. We hear different voices. Also, this kind of reminds me that the audio in this episode is not the best that we've ever put out. But it's worth listening to for the content, and it's also a good reminder that sometimes it's okay to be uncomfortable. 

Megan: Yeah. Absolutely. Right, so are you about to make me uncomfortable or what are you about to tell me?

Carrie: Oh, yeah. This is going to make you so mad. There's this pathologist who now lives in the States, but for a while lived in Canada, and he's originally from Nigeria. I don't know what his citizenship status is. Not really important, but I didn't want to say that he's Nigerian if he's not. Anyway, he was an expert witness in a trial. There's these Canadian parents who basically didn't get treatment for their child because they just don't believe in modern medicine, I guess, and the child died. The pathologist is like, "Yeah. This child had, I think, some kind of meningitis, and if he had been treated, he would have survived." This is a place in Alberta, and the judge said some bizarre things about Dr. Bamidele Adeagbo. I'm sorry if I pronounced that incorrectly. His ability to articulate his thoughts in an understandable fashion was severely compromised by his garbled enunciation, his failure to use appropriate endings for plurals and past tenses, his failure to use the appropriate definite and indefinite articles, his repeated emphasis of the wrong syllables, dropping his h's, mispronouncing his vowels, and the speed of his responses.

Megan: Is he saying this in court?

Carrie: This is part of his decision. Basically, he said, "Nah, his testimony doesn't count, because he can't speak English with a Canadian accent?"

Megan: Wow. This is this is Canada in late 2019?

Carrie: Yep. 

Megan: Wow. For it to be part of the decision.

Carrie: Right.

Megan: Let me guess, he was white.

Carrie: I don't know. 

Megan: But I mean just anti-Blackness as well, that is just jumping off those words. Wow. But emphasizing the wrong syllable. What?  

Carrie: He's probably got somewhat of a British accent too if he's from Nigeria. That's probably the first English that he learned, and so there's going to be different pronunciations and different syllables that are stressed than in North American English. 

Megan: I've just never heard anyone say that. Describe someone's English like that because they have a different accent. At least no one's white English. It just feels very anti-Black. I don't know. 

Carrie: Oh it's racist. For sure, it's racist. But my point is saying that it's racist precisely because I'm sure part of it is he's got a British accent or partially British accent, and  that's going to influence the syllable stress system, and that's fine. 

Megan: No. Definitely. But does that normally upset Canadians, [crosstalk] a British accent?

Carrie: No. Right. That's my point. 

Megan: Yeah, okay.

Carrie: That was tweeted at us by Jila Ghomeshi.

Megan: I wonder if this judge has done similar things in the past. You'd have to think so. 

Carrie: Probably. Almost always if the judge does something really bad, there's usually other examples of them doing the same thing before. But this just seems so egregious and I don't even know. I think the pathologist had given expert testimony like 30 times, and this was the only time that anyone commented on it, I think, at least in my small amount of Googling that I did.

Megan:  It's so ridiculous. You shouldn't have to be a medical doctor to be taken seriously, but even that won't protect you against anti-Blackness. 

Carrie: No. 

Megan: It's just so egregious.

Carrie: He is an expert. That's the whole point. That's why he's on the stand. How do you attack him other than being like, "Well, you just don't know English." He can't attack his medical expertise.

Megan: Right, because he probably doesn't understand enough about medicine to do that.

Carrie: Also if he did, then he would have to attack everyone who got their medical degree from the same place. You know what I mean? It [crosstalk] would just have all these knock-on effect. 

Megan: Yeah, absolutely. This just reminds me of everything, but it's like, justice is not justice because it's still human beings that are laying out the justice, so it's just as biased as X person is going to be. There's no baseline of justice because I don't know. It's just so infuriating. It's so frustrating. This reminds us that a different judge, there would have been a different result.

Carrie: Potentially. 

Megan: We really need to do one on linguistics and the law, discrimination in the law because this is happening all over the place. 

Carrie: 100%. I tried to see if I could contact the pathologist to talk to him about this, and actual journalists have tried, and he doesn't want to talk about it.

Megan: Yeah. I don't blame him. 

Carrie: Yeah. Me either. 

Megan: Maybe one day he'll want to, but I totally understand not wanting to talk about that.

Carrie: Yeah. All his expertise is just completely ignored because he has a, "foreign accent." 

Megan: Right. Yep. Well.

Carrie: Yeah. All right well...

Megan: Well welcome to Canada. I'm just kidding. 

Carrie: Welcome to white countries just in general. Today, we're talking with Alice Wong and Nina G. about having different kinds of voices, particularly voices of people with disabilities on podcasts. 

Megan: Yeah.

Carrie: Yeah. So today we have two guests. We have Alice Wong, who is a disability rights activist and the founder and project coordinator of the Disability Visibility Project, which collects oral histories of people with disabilities in the United States with StoryCorps. She's also the host of the 'Disability Visibility Podcast' and works on disabledwriters.com, which helps editors connect with disabled writers and journalists, #Cripplet for disabled writers with novelist Nicola Griffith, and #CripTheVote, an online movement encouraging political participation of disabled people.

Megan: Yeah. We have Nina G, who is a comedian and the author of 'Stutterer Interrupted: The Comedian Who Almost Didn't Happen', as well as the book 'Once Upon an Accommodation', a book about learning disabilities. Thank you both for being with us. 

Alice Wong: Thank you for having us. 

Nina G: Thanks. It's great to be here. 

Carrie: Yeah. It's great. Thank you. We have many questions. So maybe we'll just start with the big picture. You both have a disability or disabilities that affect your day-to-day life. Maybe you could explain to our audience how they have affected each of you. So let's start with Alice.

Alice: Okay. Sure. I was born disabled. I have a neuromuscular disability, which means all of my muscles are affected. As a child, I could walk, and it's a progressive condition. So, over time, I used a walker, then I went to a wheelchair, and then I used a power chair by the time I was around 8. Throughout my life, I've had to incorporate other kinds of technology and different ways of adapting to life as my body has changed. For your listeners, I might sound a little different because I am wearing a mask over my nose. It is attached to a machine called a BiPAP machine, and it helps me breathe. So, basically, at this point in my life, as someone in their mid-forties, my diaphragm muscles are much weaker now. That means I need more support to breathe. This is just my new normal. So that's where I am right now regarding my disability. 

Megan: And you haven't had to have the BiPAP machine your whole life? That's a newer addition?

Alice: It is. I used to have what is thought of as sleep apnea when I was younger. That meant you would stop breathing in the middle of the night which is not good. That's because my diaphragm was so weak. I basically used BiPAP at night for decades, but then as these got weaker over time, I started needing it full-time. The whole full-time usage of the BiPAP started about 5 or 6 years ago, and that was quite an adjustment because that meant, in public, when I'm out and about, I'm wearing this thing, and it definitely changes the way people perceive me and also the way people communicate with me. 

Megan: We'll definitely want to get back to that. 

Carrie: Yes.

Megan. Yes. But, Nina, will you tell us a little bit about yourself?

Nina: Sure. I stutter, and I have language-based learning disabilities. Those first started to manifest when I was about two and a half because, at two and a half, where most kids were starting to say their first words, I started to chirp. And so for chicken, I would make this noise, "ch-ch-ch-ch", and for cheese, I'd do something like, "Cht-cht-cht-cht" My parents were like, "Maybe that's not a normal part of development." So that is when they got me checked out at Children's Hospital, and I started going for speech therapy there. What that was, was an early sign of a central auditory processing disability, which then eventually turned into dyslexia once I was exposed to written language. When I was eight, that's when I was first identified as also stuttering too. I think I probably started to stutter earlier, but I don't know if people caught on to it. 

I think that is the gist of it. I still have dyslexia. I still stutter. My stuttering right now is a little bit less than it is some weeks, and you never know how or why or when or whatever. But the dyslexia is always there. And just like the stuttering, on some days it's there a lot, some days it's there more. 

Megan: Yeah. I got to say, I work with children learning language, and children are so creative. They find ways to communicate. Hearing you talk about how you would communicate is just another example of how brilliant children are, so that’s very cool to hear. 

Nina: Yeah. 

Carrie: One of the reasons we wanted to have both of you on was to talk about the lack of voices or certain types of voices in media and podcasting. I know that Alice, you have your own podcast, but it’s still somewhat unusual to hear someone with a BiPAP machine on any kind of media. Why is it important to hear both of your voices? Again, we’ll start with Alice.

Alice: Well, I think that’s why I started my podcast, is that I think a lot of us we're all consumers of media, and I did notice how there’s such a lack of representation. We think about diversity, we think about culture, we think about race, gender, and all these different groups. But, people with disabilities are still kind of left out or just forgotten or purposely excluded. I feel like a lot of it is due to this systemic ableism. This idea that “Oh my gosh," disabled people make you feel uncomfortable. "Disabled people remind me of my own frailties,” or things that we’re often very much reminders to people that we’re not really invulnerable. People have differences and that we all struggle. It’s not entirely this overarching tragedy or problem. I think it’s been dominantly framed that way. Part of it has to do with who’s telling the stories. It’s mostly not disabled folks and predominantly white disabled folks who are the ones who get represented. 

That, to me, was kind of the problem. I think especially with audio in the radio/podcasting world, I do think there is this culture of this idea of let’s make things as smooth-sounding. What is the aesthetic? What is the normative idea of what makes good tape? As I started getting into podcasting, I read all this stuff about you know what podcasters should or shouldn't do. I was really intimidated. I did a lot of research before I wanted to do it because I thought, first of all, I need to figure it out and learn my skills. But, also, there was a lot about what is good. I think that, to me, is very interesting because in our goal for good sound, we leave out a lot of kinds of sounds that are organic to so many of us. That’s one of my ulterior hidden agendas in my podcast even though it’s my attempt to actually try to get people uncomfortable. Like, to force the listeners to actually think, “Oh, I got to put a little bit more work into listening and understanding,” because who are we centering, really, in our audio or in our media making right? 

That, to me, is important to really challenge that. I think as a maker, I would love to see more disabled people who are getting involved in all kinds of media. Not just to be the interviewees and the objects or the subjects, but the actual people in control of producing, editing, hosting. There’s a lot of disabled podcasters out there, but I want to see one of us in a syndicated show or one of us on a major podcasting platform or network. I want to see one of us on NPR, goddamn it. 

Megan: Yeah, exactly.

Alice: With all this bullshit conversation about "diversity of media" I want to put in air quotes because it’s really tiresome. I think because people love to give lip service, but they don’t really put their money where their mouth is, and they're not really committed to sharing their platforms and resources. They talk a good talk about reaching out, but do they really uplift and actually pay marginalized folks to be making this media? No, they don't. While podcasting is great that it’s somewhat democratic where anybody can basically do it, I really want to see somebody really break out. To break out and to be in the mainstream, because I feel like the bar is pretty low. I really want to...

Carrie: It is so low. Sorry [inaudible]. 

Alice: Oh, it’s so fucking low. 

Carrie: So low.

Alice: But I have big goals in terms of, I want one of us and a bunch of us, not just one, but a bunch of us to just infect the entire radio/podcasting world. That’s my personal kind of grand plan of world domination.

Megan: Well, hopefully, we can help you do that.

Carrie: I know. Yes. I’m all for your plan of world domination. Absolutely.

Alice: Join me, Vocal Fries. Join me and we shall rule of the universe. 

Carrie: How about you, Nina? Why is it important for people to hear your voice or voices like yours? 

Nina: My theory, and this is around comedy but I think it goes across a lot of different platforms and a lot of different entertainment disciplines, that the only comics that you really see on TV, on HBO specials or Netflix specials, are white dudes who have disabilities. Not to take away from comics like Brad Garrett and Josh Blue, and also comics on America’s Got Talent. But they’re all white dudes. What I think it is, is that the media thinks that you can only be one thing. That if you are a woman, or you are a person of color, or that you’re queer, people’s heads are just going to explode if you also have a disability. I think it’s really important to have more than just that white male perspective on disability. I think that enriches the comedy experience too. I think comedy is a really interesting way to learn about people, and I know that that’s how I’ve learned about the world is through comedy, because it’s a way to absorb people’s experiences and also kind of enjoy the process too. I don’t have a podcast, but I’m on a lot of podcasts. But for me growing up, and Alice she has heard all of this, so she knows. I am also in my mid-forties, or I’m probably a little bit older than you. Right, Alice?

Alice: I think so. Maybe.

Nina: Yeah, sure. So, growing up when I was 15, I found the Howard Stern Show, and that was the first time that I saw anybody who talks like me on TV in a real, true, and genuine way because he had Stuttering John on there. Stuttering John would go out, and he would interview people, and he would make people very uncomfortable both with his questions and with his stuttering. I saw people respond to him the way people often responded to me, and I was like, “Oh my God, this is what it’s like.” I had this mad crush on him at the time and all of that stuff. What I always say is that when a disabled feminist says the only place she ever saw herself on TV was the Howard Stern Show... [crosstalk].

Megan: I know, right? I was thinking [inaudible].

Nina: [inaudible] a better job. Okay? We need to do a better job. That’s why I really appreciate podcasts and YouTube and do-it-yourself kind of things, because it’s my book. Sorry, I don’t mean to plug my book, but my book, 'Stutterer Interrupted' which is available at your independent bookstores, as well as Amazon. Yay. That one right there. I went with a hybrid publisher who is part indie, so part independent, but also I put up some of my money because I did not want a filter to tell my story. And that is the thing is once the media gets a hold of you, they tell you what jokes you can make and how you ought to be, and I didn’t want that. Also, I wanted to say fuck a lot. Alice and I wrote [inaudible] bullshit. 

Megan: Yeah. We have the explicit rating. 

Carrie: Yeah, go for it. Go nuts. 

Nina: Alice started it. I’m just following up, so there you go. 

Alice: I feel like Nina and I have talked about this, and I’d love to hear about what you two think. But I think a lot of what happens in terms of the way we internalize self-editing is our own fear of what the audience wants. That idea of how do we make ourselves palatable? Do we have to reach the broadest audience? Is that the goal, or is the goal really just to be ourselves?  I think that’s a very real tension for any artist, any maker because it’s really real. I’m very deliberate about my own podcast, about not only who I want to interview, the topics I want to talk about, but also when I do edit, and my other audio producers that I work with, I’m really intentional about preserving that person’s personality, and their voice, and the way they talk. To really get the listener as much of their authentic self, because I think a lot of what we do, subtly, whether we realize it or not, we do kind of clean up how we present ourselves. I think it’s really important for us to think about why are we doing this. What are the internalized values we have about how we express ourselves? Not only that but just what we say and how we say it. Those two are things that just really important. 

It’s taken me a long time to get over this self-consciousness, not only of how I’ve looked now with this plastic mask and tube that's attached to me, and the way I sound because it's not really smooth. Because there are times when the machine's breathing for me that I kind of have to stop this sentence. There's pauses. When I first started being out and about and using this, even though it's giving me a lot more energy, I could breathe. That's important. I really had to get over myself and just throw myself out there, and it's really been really difficult. But it's really, again, all about claiming who we are, which, I think, it doesn't happen overnight. It takes a lot of work in terms of either embracing your voice, your natural voice, or the evolution of your voice. I think there's a lot of gendered aspects of that, too. That as women and people who don't identify as men, gender-nonconforming people that there’s something about our voices and how we talk. We really have to embrace and not feel ashamed or embarrassed or try to make ourselves more acceptable based on what we think is standard sounds. 

Megan: Yeah. Absolutely. I was just thinking because I know I had the experience that you just put out there right now. I was thinking, "Wow. So you're a comedian, and we have another podcaster." You’re putting your voices out there like Carrie and I are doing, and I was just terrified. I'm two years in, I'm still kind of terrified of it. Do you all look at the comments? Are you worried about that? Were you worried about that before you went into this? Like what people are saying about you, or have you gotten to the point where you just don't care anymore? 

Carrie: There's actually a chapter on that in Nina's book. 

Megan: Oh, really? 

Nina: Yeah. I will let Alice address this first, and then I'll go. 

Megan: Yeah.

Alice: Are you sure? You want to go first? You can go first? 

Nina: Yeah. Okay. What I always tell people is that they should never pity me for stuttering or for having dyslexia or any kind of disability, but they can pity me for going to Catholic school in the 1980s. That fucking sucks. 

Carrie: Amen. 

Nina: There's wonderful Catholic schools out there, but I was not at one. For me, as a disabled person, woman especially, I've been trashed my whole life. So when I put my shit up on YouTube, it was like, "But yeah, you cannot hurt me as much as I was hurt in 3rd grade." Also, I went to grad school. Grad school, they haze you. Those are people who have power. A troll who is typing on YouTube, they don't have any power over me and so, fuck them. 

Megan: I love it. 

Nina: That is how I have been able to handle that.

Alice: I think Nina's talked about having a lot of hecklers when she does stand up. And it's just like, I'm already disabled. I've survived. You cannot do anything that I've not gone through already.

Megan: Yeah.

Nina: Yes. What I always say is that I am somebody who has a black belt, who then goes and walks down the street hoping someone comes and attacks me so then I can use it on them. Because I have a black belt in this, and you heckle me, you’re going down, because I've been dealing with this since I was 8 years old, so it's not going to be fun for you. 

Alice: No. It's not. It's really interesting I guess, just for my part, I haven't received any major traumas about the podcast. Since I am active on Twitter, I do get the odd comments off of that. I think what's interesting is that when I first started with you all, there was somebody who replied who at first complimented me. I thought it was a compliment on Twitter about my voice, and then she ended up replying more about, like, “I’m a nurse, and I'm very concerned about your voice,” and, like, “If I just heard your voice, I would think that you're in respiratory distress.” And she just made this really bizarre leap. She identified as somebody who uses a CPAP machine, which is very similar, too. And yet she kept going on about like, "Well most people listening to you for the first time, they might think you're in distress." I'm just like, "Where the hell did that come from?" Because most people mostly within like the first few minutes they know this is who I am. This is just my natural. This is what you're going to get. If I needed help, if I was in distress, I would be telling you this. 

Nina: Yeah. 

Carrie: You would [crosstalk] upload a podcast.

Megan: Yeah. Exactly. 

Alice: She said I sound like I was gasping.  I was like, "Gasping?" I'm like, "I definitely sound different, but I would never characterize the way I sound as gasping." For somebody who uses that same kind of device, I just found it so fascinating because she made it sound like something that needed a virtual intervention. To me, it's like, "Wow. What is she trying to say about people like me?" I just felt so odd. It’s just so condescending. 

Nina: [inaudible].

Alice: Overall, like, "Wow. Do people think about that when they hear my podcast?" It really got me thinking. I was like, "Well, I guess if they do, they do. But if you can hang in there and listen to my 30-minute podcast, I should be dead by the end of the podcast, if I was really gasping." I get some weird trolls like comments like that. I posted photos of myself on Twitter, and people would poke fun of my face and my mask. People just felt like I was either... One person was like, “Is this for real?” It’s like they thought I was kind of exaggerating or they were questioning my, I guess, existence. It was bizarre. Sometimes, just the sight and sound elicits a lot of, I guess, distress, or is it disturbing to people? And that, to me, I slightly delight in. The fact that I do want to disturb people, but not the fact that there's a great side in the sense that they hopefully will get used to it. But I think it is a downer that in this day and age, people are still kind of creeped out by it, and I honestly...

Nina: Well, and don't you think that part of that is, sometimes some of the responses to me are to be made fun of like other comics will make fun. Audience members will sometimes do like, "Uh-oh. Oh," like a pity moan. Some will try to fix me. Then of course like the, "Oh, you're such an inspiration. If I talked like you, I wouldn't talk at all," kind of people. There's all these different kinds of classifications. Alice, don't you think that when they do that shit that, it's them trying to take away your power. It is them focusing in on how you're saying it instead of what you're saying, and they miss the whole point?

Alice: Yeah. The fact that they're trying to make it sound like they're just kind of belittlizing my existence, which is like, "Oh gosh. Really? You're going to go there? You're going to worry about my health versus what I'm actually doing?" It's just again, people who I think want to frame us the way they think you should be framed. I think as artists and as makers we're trying to reframe and be as unapologetic as possible about who we are and just what we care about. That to me is a challenge, this learning curve for folks who are still used to very much mainstream ideas of what is normal, what is good. I think that's always a great kind of conflict. 

Megan: Well, it goes back to how important it is to have different voices in media. The people that are controlling the narrative are perpetuating these ideas. I'm thinking about what I've seen in movies, if there was a person who stuttered in a movie, it was pointed out as something that was a problem. It wasn't just a character that stuttered. It was like, "Let's make this a point," and it's right. Do you feel the same way, Nina? 

Nina: Oh, yeah. We either kill ourselves by the end of the movie, get killed, or try to kill someone else. That is pretty much what it is or we go on this quest to fix ourselves. Because of King's Speech. It's a King's Speech. Wonderful film. Great film. I can see why King George had to be fluent. He was going up against Hitler in the 1930s on the radio. His medium was the radio. To me, it's that context is fine for that, and also is written by a person who's a stutter, so I think that you had some insight there. But that and porky pig are the best images I've seen.

Carrie: That's right. Yeah. 

Nina: Yeah. And again, white men. I assume porky pig's white. 

Carrie: He's pink, right? 

Alice: Pork is white meat. 

Carrie: What's that?

Alice: Pork is white meat.

Carrie: If you see other white meat, you're exactly [inaudible]. 

Alice: Yeah. So let's put them there. I also noticed how in a lot of movies, stutterers are the villains. Like, they're such bitter, evil people because they had to struggle with their stutter. It's just either that or they're the butt of a joke. They're often used completely as the butt of a joke versus the one making the joke. I think that's a really interesting thing too that for so many disabled characters often, again, played by disabled people, which is problematic. But oftentimes, we are the psychics are just like these objects or symbols, these kind of devices that helps the protagonist. That really is not about the person who's actually disabled. So there's a whole lot we should talk. That should be another episode. 

Carrie: Yes. Well, I was just thinking as we were talking that like earlier, really what she was trying to do was make you out to be an invalid. Like, she was just trying to make you into this sickly thing, and then she could nurse you to health. Like, it's all about her needs and her idea of what you are. 

Nina: And then also invalid also means invalid. I think that is really, like, "Oh, you are invalid and your voice should not be heard." That is the thing, is that when people do, even when they do that inspirational shit, it's still bothering us in a way that is just really uncomfortable and dismisses us. 

Alice: Yeah. And I didn't really want to engage with her too that much because, frankly, I just don't want to. But I think I did have other folks reply to her and they are questioning her. I think they're sharing their thoughts about my podcast or my voice. I think there's another level, especially for people who have this concern. 

Carrie: Concern troll. Yeah.

Alice: Right. Concern trolling. It's like, "[inaudible] it, I'm just worried. I'm the good guy. I'm the one who's concerned and just worried for you, so how dare you react in a way that’s without gratitude?" That to me, is also, I think, whether that person is disabled or not, it's really based in ableism. The sense of, “Oh my gosh. Do you need help?” Or all that kind of concern stuff basically sounds so benign. But a lot of concern, a lot of this kind of condescending kind of care. This feedback that's unsolicited for the most part. It is really hurtful.

Megan: Yes. Absolutely. 

Alice: It really is. 

Megan: Is it more hurtful because it was someone who was in the medical community? I feel like that's particularly disheartening.

Nina: Oh like it's expected. 

Carrie: Yeah. There's a lot of that stuff, yeah.

Alice: But the fact that she also used the same device, I thought at first there's some solidarity. It's really odd, but I don't expect folks to 100% accept me, but that's okay. That's why I do what I do. But I guess, again, it never ceases to amaze me, the amount of weirdness that comes out of folks sometimes. 

Megan: Yeah. There's a lot of that stuff. What's interesting when I saw that interaction, but I didn't know what to do. I didn't want to save you. You know what I mean? And so I just let the conversation go, but she just kept digging a bigger hole, and I thought you handled it very well. 

Alice: Yes. 

Carrie: So, Nina, you talk about stuttersplaining. What's the most annoying way that you've been stuttersplained?

Nina: I think there’s the everyday stuff of telling me to slow down and breathe. What I always say and I think Alice has demonstrated this in her last example is as soon as someone meets someone with a disability, they suddenly have a PhD in the thing they have, and they have to share every NPR segment that they ever saw on your particular thing. And once, I had someone say, “I heard this NPR thing that people who stutter don't stutter when they talk to dogs.” Like “What?” He's like, "Well, isn't there some kind of intervention that could be used for people who stutter to talk?" And this is someone who's very smart. Supposed to be like, “Isn't there dogs? Can't that help?” I felt like saying, “No. It's a thing we can learn from dogs," and I think I actually did say this. I said, “The thing that we can learn from dogs is they shut up and they let us talk. That is a beautiful thing about talking to dogs." It’s those kinds of things.

Alice: "Oh, Nina, have you tried yoga for your stuttering." I think every disabled person, every chronically ill disabled person [inaudible], “Have you tried yoga? I heard it helps."

Megan: I [inaudible] that from the depression too.

Nina: We live in the Bay area so we spend a lot of time in [inaudible] so this is what Alice and I have to deal with all the time.

Carrie: Oh, no. It’s here too. 

Megan: Yeah. Someone will either say, “Have you tried yoga?” or “Have you changed your diet?” when they know that I have depression. 

Nina: [inaudible] causes everything.

Megan: I know. 

Nina: Oh my God.

Megan: I was like, “I'm not going to stop eating legumes, okay? Beans are important to me." 

Carrie: Also, if they're causing depression.

Nina: What?

Megan: Yeah. What’s happening? 

Alice: I do want to share that there is a podcast out there from Australia. I was a guest on it, and they are called 'Have You Tried Yoga?' [inaudible] And I love it. They asked me to talk about other things, but I think they're...The podcasters are people with chronic illness. I think that was just... When they said, “Oh, our podcast is called, Have You Tried Yoga?” I was like, "Yes." But this is a shout-out to them because that's a brilliant idea for a podcast, I think. 

Megan: Yeah. That's a great name.

Carrie: Totally is loved by women.

Alice: Shout-out to other podcasters out there.

Megan: Yes.

Carrie: Yes. Spread the love. 

Megan: Especially indie podcasts. 

Carrie: Yes.

Megan: Yes.

Carrie: So, Alice, you often talk about how you identify with Darth Vader. Will you talk about that?

Alice: Oh, yes. Just as we talked earlier about the diverse  stuttering characters, I think [inaudible] and also I'm a nerd, but I think, let's face it, Darth Vader is a disabled character. I love Darth Vader so much. He is so misunderstood. I just love how he could just force choke people because I too wish I had that power. 

Megan: Don't we all. 

Alice: To shut people up, whether it's through Twitter or just through the sound waves. But yeah, I think Darth Vader is pretty fantastic. Yes, he is a villain, but he was also a human. He was somebody with vulnerabilities. He was someone who was traumatized, somebody who was treated hard, but often in reaction or in response to pain. I think that's interesting too, that I tend to gravitate toward the villains and the scapegoats. I think if you hear his voice it's very much this sound through a mask, sound mediated through technology. I think Darth Vader is one of those original kind of cyborgs. I completely identify as a cyborg, and I think a lot of disabled people are. Before the Terminator, before this thought of hybrid android robots, people today who are disabled are the OG cyborgs. We live with a lot of different things that's in our bodies, attached to our bodies that we use devices that make our lives possible. That, to me, is really cool. The fact that humans are so adaptable. And, yeah, we always find ways to get our shit done. 

Nina: Yes. Just to add a disability nerd thing on that, is that James Earl Jones, who is the voice of Darth Vader, is a person who stutters.

Carrie: Oh, I  didn’t know that.

Nina: That's where he learned to talk like this was to foster fluency in his voice.

Carrie: That's interesting. I did not know that, but I knew that Captain Sisko, what's his name? 

Alice: Avery Brooks.

Carrie: Yeah, Avery Brooks. He, apparently, has Tourette's, and he had to learn to slow down his speech so that he [inaudible]. 

Alice: Oh, I love that. Okay.

Carrie: Yeah. Me too. So there's two Black men, then. It's not just white men. Yay.

Nina: Yay.

Megan: Yay.

Alice: Yes. The Star Trek/Star Wars genres! I love it.

Carrie: I like both. 

Megan: I was going to ask who that was, but I'm guessing it's Star Trek. That's why I don't know.

Alice: It is. 

Carrie: [inaudible] DS9 and you should watch it.

Alice: Oh, DS9 is the best. I think DS9, there's Next Generation, but yeah, DS9. Sorry. I just had to do that. Sorry.

Carrie: [inaudible].

Alice: 30 odds. 

Carrie: So, Nina, you also bring up the difference, or the fact that some people prefer “stutterer” and some people prefer “a person who stutters.” And you also talk about, for you, there's different contexts of use. Maybe you can tell us what those contexts of use are for you.

Nina: Yeah. There’s always those it's inside arguments kind of things that we have when we all get together. Some people prefer “person who stutters” because you're putting the person first, and it's much like the disabled and “person with a disability” argument. So there's person-first, and then there is “I'm a stutterer” because it encompasses a lot of aspects of my life. For me, I'm good either way. I'm not too picky about it, but I know when I present to people, like in the medical profession, like let's say I was doing training with that Twitter person that Alice was talking about. I might use person-first language because they are not getting past my disability. So depending on the situation, I might use one over the other. 

Alice: It does a lot like code-switching, basically. We live in different worlds where we're navigating different worlds. It's like, as disabled people, if you're too real for some people, you're going to go over their heads. They're just not going to be receptive. So you have to approach them in a way. Unfortunately, sometimes you do have to kind of adjust. These are calculated choices. While I think with that, at least with the podcast, with my podcast, I try to be in as much control as possible. But I think when you're kind of outward-facing to a specific audience, you do sometimes have to make those choices. And it's a very real thing.

Megan: Is that something that you would want people to ask? Which language do you prefer, person-first or disability-first? Is that what it's called? Person-first versus disability-first?

Alice: Identity-first, I guess. 

Megan: Identity-first versus person-first right? Yeah. 

Alice: I think it's a bit nice that there have been a few times with journalists interviewing me, and they'll ask me, “How would you like to be identified?” I'm like, “Oh, thank you so much for asking.”

Megan: Well, that's great. 

Nina: [crosstalk] “That's lovely.” 

Alice: That's basic courtesy, but that's also giving us power to how we want to identify. So I'm like, “Oh, yes [crosstalk].

Nina: Yes, and like...

Alice: Go ahead.

Nina: With the media, I've gotten to a point where it's like, "Call me a person who stutters or a stutterer. That's fine. Just don't say I'm afflicted." I had somebody write, like, 300 words about a book reading that I was doing, and they used the word “afflicted” three times. And then there was another one who said, it's a title of the newspaper article was “Author and Former Stutterer Talks at Event.” It was like, "Nowhere in any of my media stuff does it say I'm a former stutterer, but they jumped to the conclusion that, 'Oh, why would you write a book if you weren't cured?'" Like there was that assumption. Yeah.

Carrie: Wow, or even, like, you're out doing a book tour and doing readings, you must be, yes. No longer afflicted.

Nina: Who's paying to listen to that? 

Alice: Yeah. Well, it's the idea of what makes a good story. Well, of course, for non-disabled people, it's about overcoming. It's about this success story versus the story about the realness. I think that's, again, these very narrow ideas of what disabled narratives can be. I think that's why Nina and I are doing what we're doing, is that there's just so much out there. There's such a beautiful complexity, nuances about our stories. It's not just about being a model minority myth. This perfect good disabled person who's learned to be an ambassador or just give these special lessons of wisdom or overcoming their insurmountable challenges. It's a lot more than that.

Nina: Yeah.

Carrie: Yeah.

Megan: It almost sounds like they want stories of reform or reformation or something.

Carrie: They want a cure. They want everyone to be cured. 

Nina: Yeah. No fix it. Fix it.

Alice: They want a happy ending. They want to feel good moment. I think that's been the conditioning of again these kind of very human interest stories that we'll often see in the media about disabled athletes who have just learned to walk again, swim again, or run again. Well, that's definitely part of that person's story, there's so much more to that. I'm a [inaudible] to think that that's the disability experience, but it's so much broader.

Nina: Well, and I'm finding with the book that it's hard to sell my story to larger venues online because it doesn't incorporate that. Where, like, I'm saying instead of, “I need to change, you need to change.” That's not so popular in the media. So it's been an interesting process, like, what I say is, “Oh, I inspire people to change.” Not inspirational in terms of, “Oh, I’m so glad that’s not me.” It's very tricky to play the media so that they do tell a different kind of story, but sometimes you have to couch it in their way, which is really crappy, and it's really hard to trust a reporter because you don't know how they're going to come at it. 

Carrie: Yeah. I feel like we've had to think about that too. Our whole message is, “No. You don't have to change yourself. Society has to change to accept however you are, however you talk.” Yeah, it's not sexy. Sexy is, “Yeah, here's how to fix yourself. Here are the ten tips and tricks.” Yeah,

Alice: I think that's the bigger ask. I think that's again, when you think about the audience, who is the audience? Who are we really trying to reach?

Nina: Yeah. You were asking us earlier, have we thought about that? And, yeah, we definitely have. Our answer is the audience is people who actually do give a shit, who don't want to be an asshole, but maybe still are. We all kind of are. 

Carrie: We're all assholes. All of us.

Nina: All of us. 

Carrie: We are all capable of assholes, so we have to constantly unlearn assholeness.

Nina: Exactly. 

Megan: Oh, every day, every day.

Nina: So we're trying to reach the people who actually want to undo their assholery. But also, you asked a question about being authentic and being ourselves. It's true that I do edit our podcast somewhat. I don't edit a lot, but I edit it enough so that I take out some of the pauses that don't work or conversations that dead-end or whatever. But mostly, it's our conversation. When we were deciding to do this podcast, I wanted to think about, we're not sociolinguists, but this is a sociolinguistic endeavor. Right? Are we interlopers in this space? I did worry about that. So, all these kinds of concerns, like, are we authentic? How do we sound? Who's going to listen to us? I did worry about it, but yeah.

Alice: Yeah. I think that sometimes that could be something we obsess over, but sometimes I think just being focused on keeping our eyes on the prize, in terms of just continuing to explore these things, and to have these really important conversations that really aren't happening enough. Which is why I appreciate your podcast and the fact that you’re called Vocal Fries. I think it's just delightful. 

Megan: Thank you.

Alice: When I saw the French fry emoji, I’m like, “No. These are my people. These are my people.” I do love a good French fry. Already, that’s a bonding moment. But the fact that we’re all kind of sticking our claim, just trying to push the conversation.

Carrie: Well and I feel like that's...

Nina: We really can't control what people think about the things that we put out there. Because I've done a ton of jokes, and people will think that I'm saying one thing when I'm saying something else. And we just have to know that once we put it out there, it'll be interpreted in whatever way, and we have no control over it. 

Carrie: Yep. 100%, which is scary, but it's also kind of freeing. Like, “I don’t have control.” 

Megan: Or you could just do the best you can right?

Carrie: Yeah. 

Megan: I think it's actually good that we're not actually sociolinguists because we are having these authentic conversations like we are right now.

Carrie: That's true. 

Megan: We're asking more because we haven't studied x, y, or z. We get to have people that are actually experiencing it and asking how they are experiencing, not trying to put what we might assume is happening onto anything because we just don't know. 

Carrie: You're absolutely right. I think it's like the academic thing. I was an academic for 20 years, and I got absorbed into that culture, and if you say one wrong thing, you'll get attacked for it. I just was more paranoid about it than maybe I should have been.

Megan: Yeah.

Nina: Oh, academia will do that to you. That is exactly it. And that’s where we could also go on and on and on about having those voices in academia because I felt the discrimination there. And especially as someone with dyslexia, where it may not be my physical voice that is the problem, but it's my written voice. That’s why I turned to comedy was because that was my way to express the exact same thing, but in words that were more accessible to me, even though there was a stutter.

Megan: Nina, what I'm hearing is that you are a reformed academic. 

Nina: Yes, I guess so. I get in it. It's still an academic sometimes on certain days.

Alice: Yeah. Same here. I got a master's in [inaudible] sociology and did not get my PhD because of just the grind. Just the absolute grind. This idea of this PhD somehow confers you with all this legitimacy, which is actually all BS if you think about it. I worked as a staff member at a university for over 10 years, and I just left because it just wasn't as fulfilling as what I'm doing now. But I think, again, it speaks to your approach with your podcast is that, us as podcasters don’t have to be the experts. And I feel like that's... [crosstalk].

Carrie: Yeah, that’s right. 

Megan: We're learning with y'all.

Alice: I feel like that's a great kind of approach because I think just like myself, I think I want to learn from others. I think my goal when I interview people is to give them the space. Like, not to center myself during the conversation, but really let them shine. The fact that I'm just going to ask a question to guide our conversation, but it’s just as much for me as a learning process, that I hope is also a great experience for the listener, because I'm not ever going to pretend to be an expert on something, even though I do my homework before I interview somebody. But I've been doing it as a host, say that I'm an XYZ expert.

Nina: Absolutely. 

Carrie: That's great. What do you want our listeners to take away from this conversation? If you could sum it up in a few sentences? 

Nina: Alice, I'm going to let you go first because you don't have dyslexia. I have to think about what I'm going to say. So, you're first.

Alice: Okey dokey. I just have to say that I'm going to encourage listeners of this podcast to seek out, first of all, think about what you listen to? What do you read? What kind of media are you consuming or culture? What's missing in your media diet? I want to encourage people to have the curiosity and interest in hearing more and learning from disabled people. I think there are so many amazing writers and artists in every genre and every field that's out there that's doing amazing work, so I was just [inaudible] that because while it may seem like we're not there, we are there. I think that's the bridge. That’s really the voice that’s missing. It’s not that we aren't there; sometimes you just don’t know it, and you may have to do a little bit of extra leg work to try to find us, but we are out there. And I think it’s worth the search. There’s just a lot to be learned and just a lot to be valued.

Carrie: That's great. Thank you.

Nina: Absolutely. Yeah. I’d like to add to that because I think our voices need to be heard. I think a step for that voice is to question what you think disability means for yourself. It’s not only for people who have disability because we internalize these stigmas and then we kind of interrupt ourselves in that process. I know that that was why I didn’t step on stage doing comedy for 25 years, because I didn’t think someone like me could be up there. But for others, not only those with and without disabilities, we all hold those stigmas, and we have to question those and examine those and reform those, so that we can think about disability in ways that give us power instead of ways that continue to oppress us.

Carrie: That's great too. Thank you.

Megan: Yeah, thank you so much. 

Carrie: And maybe [crosstalk] we should also have you tell our listeners where they can find you.

Alice: Nina, you go first?

Nina: Sure. You can find me, Nina G, at ninagcomedian.com, and my book, 'Stutterer Interrupted: The Comedian Who Almost Didn't Happen', at stuttererinterrupted.com. Also, I have a CD called 'Disabled Comedy Only' that is available online. It’s not a CD. I’m old. That’s why I said a CD. Whatever that is. It’s a download. It’s an album. [inaudible] comics. So you can find that on CD Baby and everywhere else too.

Carrie: Cool. 

Alice: It’s an audio experience.

Nina: Yes. [inaudible].

Alice: So first, you'll find me at disabilityvisibilityproject.com. My podcast, 'Disability Visibility', is on iTunes, Stitcher, Spotify, and Google Play. I guess, also, in July 2020, I'll be coming out with an anthology of essays by disabled people for the 21st century called 'Disability Visibility'. They’ll be published by Vintage Books. So look out for it. 

Carrie: Yeah, that's great.

Alice: July 2020. 

Megan: That’s really exciting.

Carrie: That's awesome. 

Alice: And am on Twitter at @SFdirewolf. 

Megan: Oh, you nerd.

Carrie: Yes.

Alice: [inaudible]. Yep. 

Megan: Well, thank you so much for being here with us.

Carrie: Thank you. 

Megan: And shall we leave our listeners with one final message? Don't be an asshole.

Carrie: Don't be an asshole.

Alice: Don't be an asshole.

Nina: Yay. 

Alice: Alright. Thanks for so much for having us.

Nina: Thank you, everyone. 

Carrie: The 'Vocal Fries' podcast is produced by me, Carrie Gillon, for Halftone Audio, theme music by Nick Granham. You can find us on Tumblr, Twitter, Facebook, and Instagram @vocalfriespod. You can email us at vocalfriespod@gmail.com, and our website is vocalfriespod.com.

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