It was so fun to speak with her! The video podcast is captioned, and I’m including the transcript below.

Learn more about the book Amy co-edited, Our Chosen Path: The Transformative Impact of Cued Language, which is available on Kindle for $9.99. Also consider attending the National Cued Speech Association’s 60th anniversary celebration July 17-19 at the Silver Spring, MD Civic Center. Register before June 22.

Thanks for reading and listening to Needs Editing! This post is public—feel free to share it.

Description: On the left of the split screen is Amy Ruberl, a white-presenting woman with shoulder-length dark gray hair, black rimmed glasses, and a black button up shirt. She is sitting in a blue office. On the right is Sarah Katz, a white woman with shoulder-length brown hair and a black sweater. She is sitting in her own white office. To the left is a dark green curtained window.

- Hi, so I’m Sarah Katz, the host of “Needs Editing,” a podcast about a deaf experience from my perspective as a deaf native cuer who uses Cued Speech to communicate. Cued Speech is a visual communication system based on the phonemes of spoken languages. And I use Cued American English, which is the form of Cued Speech people in the United States use to communicate. My guest is Amy Ruberl, who is hearing. And I’m going to give her bio in a second. I invited Amy because she’s an expert on the history and the terminology around cueing. I wanted to talk to her about the what, why, and how of Cued Speech and other topics. There’s a book that just came out called “Our Chosen Path: The Transformative Impact of Cued Language,” which you should check out. I’ll include a link in the description. I’m sorry. My cueing is awful, but I’m trying my best.

- You’re doing great.

- Thank you. So I’ll include a link in this description. And Amy contributed a few chapters to the book about some of the topics we’re discussing today in further depth, so.

- Yeah, and I was an editor. I was one of the five editors.

- Okay.

- Yeah.

- You were one of the editors. And so Amy has been involved with cued language. This is her bio. She’s been involved with cued language at both regional and national levels since 1987. She earned a Master’s in Education of the Deaf from Smith College and a Bachelor of Science degree in Elementary Education from Bucknell University in Pennsylvania. Amy is chair of the National Cued Speech Association’s Instructor Certification Committee. Previously, she served the NCSA as executive director, director of programs, initiating workshops and camps across the United States, and regional director for the capital area, which includes Maryland, DC, Virginia, and West Virginia. Amy was the director and assistant director of Cue Camp Friendship in Maryland for many years, where I spent many summers.

- See, that’s where I met you, I think, you and your family.

- Yeah, and she was the first president of the Maryland Cued Speech Association. Amy worked as communications specialist and teacher for Montgomery County Public Schools for students who were deaf and hard of hearing, working with signing, cueing, and oral students for 10 years. Amy is also the owner of Cuers, LLC, where she creates materials for learning how to cue. So, Amy, I wanted to start by talking about you. So you earned a degree in teaching deaf people, and you’ve served many roles in the NCSA. How did you come to this work? And why is this all so important to you?

- In college, I took a ASL class, and I loved it, and it was great, it was really an interesting time. And then I was getting ready to graduate. I was like I wasn’t ready to be an adult yet. So I thought, “Grad school, I can do that,” right? And for deaf ed, I have an aunt and an uncle who are oral deaf adults, and like they gave me the interest in looking into deaf ed. So I went to an oral program at Clarke School for the Deaf at Smith College, and I loved my time there. Those teachers are so amazing, but I was really frustrated, because the kids there, it was before implants, and the technology just wasn’t there for getting them to listen well enough to learn language easily that way. So I was feeling very frustrated by the end of my time there. When I applied for a job in MCPS, Sheila, Sheila Doctors, said, “Would you be interested in learning how to cue?” I said, “Sure.” Okay, I think I had a sentence about that in my classes. “I’m game if it will give me a job, sure.” And so I learned to cue, and then didn’t cue at all for a few years. And then one student started to go to his homeschool. He was a cuer, and they didn’t have any itinerant teachers who knew how to cue. And Sheila said, “Amy, you took the class. You did well. Wanna go?” I was like, “Sure. Okay.” So my poor first student, I was so slow. I was like, “Hi, my name is, is...” It was painful, but I discovered that this student was amazing. And then I started working with all these other high school cuers. It was like these kids are amazing. They don’t really need language help. They need, like, navigating-the-world help. Like how do you get a CLT for a doctor’s appointment, or a play, or whatever? How do you get yourself up in the morning, like, without your mom coming in time to wake up, right?

- Right.

- So, but they didn’t need that intensive work. My oral and signing kids did to like backfill language. They didn’t have holes in their education. I fell in love with it. And just, like that was the beginning of the end for me. I just kept doing cueing things. Yeah.

- So for people who don’t know, who is Sheila Doctors?

- Oh, I’m sorry. She was the director of the DHOH program in MCPS.

- Yeah, I remember her fondly.

- Yeah.

- Great. So you worked with cueing, signing, and oral kids. So you noted that they had like some backfilling of language that was necessary. Were there other particular challenges you noticed in comparison with the cue kids?

- I don’t know. I think the signing kids kept to themselves. Like they had a more difficult time making friends with the hearing kids in the classes, because their lip-reading or speech-reading skills just weren’t as strong, because they didn’t have as strong of English to guess what the kids were saying.

- Yeah.

- Right? And the oral kids were just, they kind of thought they got it all, but didn’t know what they were missing. I don’t know.

- Yeah.

- I mean, they were all amazing, and I loved all my kids that I taught, but I think I saw more weaknesses in the oral and deaf kids, in the signing kids, than I did in my cueing kids.

- And the signing kids were in, I mean, all of these kids were in hearing mainstream settings, I imagine?

- Yeah, well, the signing kids were often in a self-contained classes in a mainstream school, but most of their classes were with other signing kids. I was called in to do speech and listening drills with them, which they didn’t particularly care for. Yeah, I was one of those people, you know, “Here, feel my face. Do you feel it vibrating? You can say “v” too.” You know, I was like, “Yeah, lady. This isn’t so much fun.” I mean, I did that with cueing kids too, like, to help with pronunciation when an oral report was coming up. Like, “Well, let’s talk about your speech patterns and how you can make yourself accessible to the class,” because, you know, cueing doesn’t really help with speech, and also language, access, and pronunciation, but not how to say the sounds and make them. And a lot goes on behind the scenes to make speech work, you know?

- Yeah, yeah. And so much happens like behind your, you know, your lips.

- Yeah, like, yeah, it’s back there, where you can’t really see what’s going on, like “is the voice on or off?” If you can’t hear it, you don’t know.

- Right.

- I don’t know, like-

- I’ve read that only 30 to 40% of information in spoken English is visible on the lips.

- Not even that. I mean, in context. You might get that consistently if you know the topic. I mean, you must know this, you get irritated when people assume that you know what they say, because your speech is great. If people didn’t know you were deaf, they’d be like, “I don’t recognize your accent.”

- Right.

- Right? It’s not that you’re deaf. And so they assume you can understand them, and I know. I’ve been with you and forgotten to cue myself, because it’s easy to forget with you. And I’ve been like, “Oh,” kicking myself. You are one of the people who I’m like, “I need to cue all the time. It doesn’t matter. If the cuers are around, I need to cue, because they need it. It makes life easier for all of us if I’m cueing, even if my cueing is sloppy and off, like-”

- Yeah, but yeah, I mean, my hearing has declined over the years, but my speech, people say, sounds really good. But I have severe to profound hearing loss in my left ear now, moderate to profound on my right. So you can never tell based on someone’s speech how much hearing they have.

- And as I get older, and my hearing is going, I have a high-frequency hearing loss that I left alone for a long time. And then I noticed, “Oh, shoot, I’m not getting it in crowds.” More than four people in a room talking, “Ooh, I need something.” And so I finally went and got hearing aids, and I was like, “Hey.” It’s like I need ‘em, so, and I love them, I love having them. I’m mad at myself when I forget them, you know? And people don’t know.

- Yeah, I love my hearing aids too. I mean, I have a cochlear implant in this ear now, which, I don’t like very much. And I wish I could go back to my hearing aids. So I can relate to that.

- Yeah, yeah. But, and I thought, when I realized I needed them, I thought, “My students would be really upset with me if I didn’t go and get them, knowing I needed them.” Because I was always like, “Well, they’re looking at your ear. Okay, take your hearing aid off and show them.” “Here. Wanna see? It’s not a big deal. Here you go. Like, this is what it does.” Like, so my audiologist is so surprised. They’re like, “Well, your hair, no one will see them.” And I’m like, “Do you have hot pink hearing aids?” And they’re like, “What? No adult wants hot pink hearing aids.” And I was like, “I do. How about purple?” They’re like, “No, we have beige and champagne and silver, and, you know, rose gold.” And I was like, “What about”-

- Boring.

- “The bright colors? I want bright colors.” And they’re like, “Sorry, not for adults.” And I was like-

- Well, mine are kids’. I’ve got the kids’ hearing aid, because I really wanted pink.

- Yeah.

- And my cochlear implant came with like a stuffed animal, ‘cause I think they thought I was a child, which is fine.

- So funny. But I’m like, “We need to normalize, like, not being able to hear well,” because even folks who are hearing don’t get everything. And like being able to ask for repetition easily, and saying, “Wait, I missed this,” you know, needs to just be part of life. And I know there are hearing people who miss it and don’t know how to ask, because they don’t wanna ask, because they usually don’t have to. And I’m like, “Oh, come on, like, let’s normalize this.”

- Yeah. It’s hard.

- Anyway.

- Like, I mean, I’m definitely one of those people who sometimes will nod and smile, but it’s not a good habit.

- I get it, though. Like I get it. I understand. Like my son was here for Mother’s Day, and he was telling me something about socks through a door. And I couldn’t see him or see what he was talking about. And I was like, “What?” ‘Cause socks are all high-frequency sounds. And over distance, they get lost. He was like, “Oh, Mom, you’ll figure it out.” I was like, “Oh, okay.”

- Aw.

- Anyway, it’s funny. It’s like what comes around goes around, I suppose. But I feel lucky that I had you all to like, not you particularly, but my students, to educate me and make me think about life differently. And like lots of teachers of the deaf are patronizing, or, “I’m here to save you.”

- Yeah.

- Or, “I’m here to, ‘Oh, you poor thing, let me help you.’” And I’m like, “Eh, so this is your hurdle. Okay, let’s see how to get over it together,” you know, right?

- Right. Like I’d rather-

- Yeah.

- Empower my students to be the best they could be, and not rely on me for... And I was like, “I’m so amazing because I work with deaf.” It’s like, “Yeah, this is who I work with.” You know what I mean?

- Right.

- Did you ever feel that way, like teachers felt like they’re-

- It’s funny that you should say that, because for so many years, I resisted cueing, like, because I felt like people who cued had this savior, like people around me, like my mom or... Even though my mom, it was far from her mind. To me, it was like, “Don’t help me, like, I’m independent. You know, I don’t need you,” but I did. And so it’s this complex dynamic, I think, that hearing people don’t really understand entirely sometimes, so yeah.

- Yeah, I had the pleasure of working with four or five deaf adults to teach them how to teach people how to cue. And then we went around the country and taught people. It was so much fun. And like I helped, in that, I made sure the hotels had what they needed-

- Right.

- You know, for waking up, whatever. But we would stop on the road and go into a Starbucks. And I’d be like, “You do this every day. Like you don’t need me.” And sometimes I would have another hearing person with me to teach, because we taught in teams. And they’d be like, “Oh, should we stand here and wait, and see if they need help?” And I’m like, “No, they’re adults. Like they know how to ask for help if they need it.” And it was weird to me, that it was like a revelation to me how different I viewed my deaf adult friends. It’s not like.

- Yeah.

- You know, it’s like you’re amazing people, and I wanna be with you. And you’re adults and know what you need and want. And well, do it yourself, right?

- I really appreciate that, because it’s so, I feel like, rare in the world for people to view you as like an equal when you’re deaf, but-

- Or anything that’s different, right?

- Anyone, yeah. Yeah.

- Yeah.

- Whether you’re an immigrant or, you know, LGBTQ+, or whatever, it’s unfortunate.

- Yeah.

- But, so I wanna talk about cueing a little bit more. I mean, we are talking-

- Sure.

- About it the whole time, but, so some of the basics about Cued Speech. So Dr. Cornett, or Dr. R. Orin Cornett, invented Cued Speech in the mid 1960s while he was working at Gallaudet. So what is Cued Speech? And why did he call it that?

- So he couldn’t understand why deaf readers were not achieving higher, higher levels. They were stuck at the third- or fourth-grade level. And he wanted to change that for them. He looked at what it was about English that they weren’t getting, and how could he develop something that would give it to them. So he thought, “I know, it needs to be on one hand, something a mother can do when she’s cooking dinner, carrying groceries, you know, easy, so near the face and in tandem with speech.” He thought speech was the most important piece of it, and the hand was like helping it along some, which is interesting, which is why he called it Cued Speech, because speech had to be part of it in his mind. And it wasn’t for a long time, like almost like 25 or 30 years, that people were willing to think, “Hmm, maybe speech isn’t the most important piece of it.” Like, and he didn’t think about two deaf kids being together. Like he thought teachers and parents would cue to the kids, and, you know, they would talk back, but like he didn’t think about what happens when two deaf kids are in the room together, right? And so kids weren’t like encouraged to cue for themselves for a long time, yeah.

- And are kids not encouraged to cue anymore, or?

- They are, I think. And I think cue camps help a lot with that, right? And cueing parents, like deaf cuers with kids. And I know you’re thinking about this, like, how do you know what your kid is saying if they don’t give you something visually, right?

- Okay.

- So I think as our deaf cuers became parents, it became really apparent that we need to cue both ways all the time. But yeah, no, at first, they weren’t, and then cue camps happened, and we are like, “Mm-hmm, you gotta cue together.” Yeah. And it’s so important.

- Yeah, definitely. So can we demonstrate to viewers how cueing works? Like I know we’ve been cueing the whole time, but people might not get it. Like, and let’s talk about, like, try to verbalize it, because some people may be listening instead of watching.

- Sure. So there are minimal pairs in English. So the only thing that differentiates between the phonemes or the sounds is voicing. So like “f,” what the letter F says. So when you cue, you use an open hand, all fingers extended, and your mouth has your upper teeth on the lower lip, right? You go f. And then if you wanna say, “v,” the only thing that’s different is voicing. So when you’re talking, you turn your voice on, and you get “v,” you turn your voice off, you get “f.” So Cornett realized they needed to look different on the hand to show the difference between them, because the mouth will look the same, and you may not have access to the visual piece of it, or the auditory piece of it. So they needed to look different. So “f” with an open hand and “v” with just your index and middle fingers extended, are “f” and “v,” yeah. And like “t” uses the same hand shape as “f.” So “t,” the letter T, what that letter T says, so it looks different than “f” does on the mouth. So F and T can be on the same handshape because they look different on the mouth. And “t,” and “d,” the letter D, your mouth does the same thing to produce them, except for voicing. So “t” is voiceless, and “d” is voiced. And when you cue, you use just one finger extended, your index finger is extended to show “d.” So “t” and “d” look the same on the mouth, but different on the hands. And the same with vowels. Like “ih,” like that short I sound, you touch your throat for it, and “eh” look the same, ih, eh, ih, eh.

- Eh.

- So on the mouth, they look the same, but where you touch for the vowels is different.

- Yeah, it’s really interesting to hear all that, because I always say the “m,” “f,” “t,” but there’s so many. The sounds “m,” “f,” “t” are all the same hand shape, but on the lips, “m,” “f,” “t” look different.

- Yeah, I like using mom, bob, and pop as examples too, because they look the same on the mouth, they’re identical.

- Right.

- They’re the same. But if you do mom with an open hand, or bob with the thumb tucked, and pop, then they look different. And mop and bomb, you can show all those words that look identical on the mouth, but when you cue, they’re different.

- Yeah, and I remember, when I got my cochlear implant in 2022, I was 33 years old. And I was really struggling to hear the difference between “t” and “d.” And cueing just helps so much with being able to distinguish between sounds like that.

- What’s funny is, lots of hearing people don’t realize they know how to speech-read like colors. If you do like.

- Blue.

- Pretty blue, right? Or.

- Yellow.

- Right. But there’s some colors that are tough.

- Red or gray, white.

- Yeah, green-

- Green?

- Red, white, all look the same on the mouth, and gray, kind of, yeah. Isn’t that funny?

- That is funny.

- Like you never think about those colors as looking the same. I mean, they’re so different, and like visually, right?

- Yeah, the other day, I was watching a video on Instagram of a guy who was saying three words, well, phrases. One of them was, “I love you, olive juice,” and something else. And I-

- Yeah.

- And I got it wrong every time he did one of these things. And it was like, “Really? I’m a cuer. I thought I could get this.” But not-

- But out of context, it’s really tough.

- Yeah.

- It’s tough. Yeah. I mean, you would know it wasn’t olive juice if you were like, “Goodnight, honey.”

- Right, yeah, context.

- Olive juice.

- Yeah.

- Probably not. Get it? Yeah. Or, “Oh, you’re going to the store. Can you get some I love you?” Right, like-

- Right. It wouldn’t work.

- That wouldn’t work. You would’ve a better guess at which it was, yeah.

- Yeah, so you said that Dr. Cornett invented cueing because he noted that deaf children were graduating high school with a fourth-grade reading level, or a third-grade.

- College.

- Oh, college.

- College.

- Oh my gosh, college.

- Yeah, they would take five years of English at Gallaudet and not move off of the fourth-grade level, yeah.

- So how does cueing help with bridging the gap?

- Yeah, sure. So cuers can access the phonology of English visually. Just like hearing kids get it auditorily, you can get it visually. And if you know the building blocks of a language, you can put them together and/or take them apart by decoding easily. And so by having that access through vision, you have access to the building blocks of English and can do what hearing kids do through their ears. It’s funny, because phonics is having a resurgence these days. And now, people are like, “Oh, well, we need to go back to that.” And cuers, they’re like, “Oh, well, cueing, maybe we should cue during our phonics and reading times.” Like, yeah.

- Yeah.

- Maybe you should. Yeah. And there were several researchers who tried to disprove Cornett early on. Ling, Daniel Ling, was a huge listening and spoken language person in research. And so he’s like, “Fine, I’m gonna do some research and show it doesn’t make a difference.” And he was like, “Oh, shoot. It does. You can get the phonemes of English through vision when you cue and that.” Yeah, I mean, he tried, he tried it every, like, five different ways, to just say, “No, it doesn’t do it.” He’s like.

- Ah.

- Every time, he still wasn’t convinced enough to like say it was a good thing to do. I think in deaf ed, we have manualists, like people who are like, “Yeah, use your hands,” and oralists, who are like, “No hands, listening, and, like, no help.”

- Right.

- And so cueing was too oral for the signers and too manual for the oralists.

- Yeah.

- Yeah, we got stuck in the middle, like the ugly stepchild that no one wanted, you know?

- So why are hearing devices and lip-reading insufficient for addressing the gap?

- So for people who can hear, they may understand this analogy. If you have a radio station that’s off, like it’s just off, and the sound isn’t coming through, you know someone is talking, but you can’t really understand, that there’s too much static in the background. If you turn it up, it doesn’t really help, right, right? Most listening devices aren’t like eyeglasses. It doesn’t correct the problem. It just helps a little, like, gives you a boost, but it doesn’t make everything clear, that clarity isn’t there. Like eyeglasses give you clarity, but hearing devices only give you a little more access to it. So having something visual is helpful.

- Would you say the same about cochlear implants?

- I think implants are amazing and doing amazing things. And the younger you are when you get one, the more likely you are to meet with success listening. But they still haven’t solved the problem of noise and like filtering out what’s not important, and they break, and the batteries die, and-

- Yeah, I know.

- I have a friend whose kids, like, lost them on a rollercoaster, like, on the side of the car, you know what I mean? They fall off, you go swimming, you go in the pool. There’s so many times that you aren’t able to use them, or you have so much fatigue, listening fatigue. It’s so hard to listen all day to a broken system that you just wanna turn off the world.

- Oh, yeah. It’s still hard work with them. It’s not easy.

- Yeah. Yeah.

- So.

- Amen. The second my husband comes into the room in the morning and starts stirring his coffee, I’m like, okay, “It’s all over now, I’m done. I’m taking off my cochlear implant. I’m good for the day.” So-

- Yeah, yeah. I get it. I mean, I think listening fatigue is a real thing. And hearing people just don’t get it. It’s like, “I hear all the time, I’m not tired by listening.” And you’re like, “Yeah, but it’s a more complete system.” And we grew up with it, and our brains know how to, like, filter out what’s not important, and hearing aids just make everything louder.

- Yeah.

- And not always in a helpful way. And it’s just exhausting. And I think it... Right?

- Husband will be scratching-

- Yeah.

- His leg or something, and I’m like, “Oh my God, that makes a sound, that’s awful. Like I don’t wanna listen to that.”

- Exactly. Exactly. But it’s just, I think it’s hard for people to put themselves in a position of lacking something. In their mind, they’re lacking, like, “I can’t imagine life without sound.” Like, “Oh, you poor thing.” And I don’t know. And deaf people are like, “I can’t imagine a life without quiet.”

- Yeah. Yeah.

- Right?

- So blissful. Wow.

- Exactly. Exactly. So it’s just funny. And I think, yeah, hearing people just get it in their head that they have it better. And I’m like, “It’s not always true.” I mean, it’s true, easier to listen sometimes, but it’s also like-

- Yeah.

- If you don’t know what you’re missing-

- Exactly.

- I don’t know. Is life so awful? I don’t know, right?

- No, it’s not.

- No.

- I mean-

- Right?

- Awfulness is dealing with, you know, people who aren’t curious, or aren’t like interested in another perspective, so.

- Or another lane. Like, I don’t know, the world would be a boring place if we were all the same and saw, like, saw the world in the same way, you know?

- Definitely.

- Like I, yeah, I-

- Yeah.

- And my way isn’t better than yours.

- Yeah. Definitely.

- Right?

- Yeah.

- Yeah, yeah.

- So, and back to the book.

- Yeah, sorry.

- You talk about the research of Melanie Metzger.

- Yep.

- Okay. And Earl Fleetwood. And it showed that when language is rendered via cueing, it is cued language. Can you explain in lay terms what that means?

- Sure. So Cornett really thought audition was the best, right? He thought that was paramount. And Earl and Melanie were CLTs, they were cued language transliterators, who were sitting in classrooms and cueing all day without their voice. And their students knew everything they were saying. And it got them thinking, “Huh, how is that possible? Like if I’m not talking, is it because they hear the teacher? But it’s not at the same time, there’s always a lag.” You know, CLTs aren’t mind readers. They aren’t. They don’t know what’s coming. They have to wait a second to give it to you. So they started looking at CLTs and what made it work. And they realized that people like move their head to show emphasis, like their eyebrows, or they, you know, or furl their eyebrows, or whatever, to show mood or stress, or like all the pieces of language. Like this is something more than just Cued Speech, because it’s not just what the hand and mouth are doing together, it’s like all these other things too. I can whisper, and I can yell, and I can, you know, be silly by making faces and things like that, and give a lot of information. And that’s what we do with our voices, like hearing folks do with their voices, with intonation and pitch things like that. And you can show that usually while you’re cueing. So, and they were the first to think about it and really be like ivory-tower nerdy about language. And I love them for it. And to have the respect for their consumers, that they were more than what Cornett thought they would be.

- So did Dr. Cornett think of CLTs? Like did he imagine CLTs being a thing? Or like did he just think cueing would be accompanied with spoken language all the time?

- I don’t actually know. That’s a good question for Earl and Melanie, because they talked to him a lot about it, and they called him and met with him, and said, “We’re thinking about this. Like, what do you think?” And he is like, “Well, it’s not what I thought originally,” you know? And they’re like, “But this is a thing we’re seeing.” They did some awesome research with audio and cueing together. And the audio, well, the mouth was saying something different than the hand. So like, I can’t think of a good example. Like the person would say, “Red,” but the hands would cue, “When,” or something, like something, whatever. It would be similar thing in there, what they do. I can’t think of... Terrible. I should have a good example for you, Sarah. And I don’t, I’m sorry. The book, if you read the book, it talks about it, so. So, and the deaf cuers always use the hands, and the hearing folks always use the audition.

- Interesting.

- Even if they were like, “I think there’s a disconnect,” but always, like, hearing went to hearing, and deaf went to hands. It’s funny.

- Interesting.

- Yeah. Yeah.

- So can you tell the viewers what the difference is between Cued Speech, cued language, and Cued American English?

- So it’s really like changed over time. And terms, like, get thrown around together. I think about Cued Speech as the system and what Cornett thought of first, of the hand and the mouth together, and the mouth was making sound, speech, right? Cued language is really when you add all the other pieces that you need to understand. So like, “Am I asking a question or making a statement? Am I mad or sad or happy or whatever?” Like what you do with your face and like how forceful you are with your cuers when you’re... Are you soft? Like if you’re, “Do you wanna go to the restaurant?” “No.” “No.” “No,” you may be able to convince me. But, “No,” I don’t wanna go, right? So the cued language to me is showing that difference, like those subtle linguistic differences.

- So are there cueing accents? Like I know there’s signing accents. Like people have told me that my signing is very quiet. I’m very, like-

- Oh.

- I don’t know, soft with my hands or something, like quiet with my hands. Now I wonder if there’s a cueing accent, like-

- I think there is. Yes, I think there are. Like are you a sloppy cuer? Like do you cue like this?

- Oh, yeah, my-

- You know, that I’ve seen people do that. Or like they never never touch. Like when I was pregnant with my first child, I couldn’t touch my throat, it made me gag. And so I’m not a good toucher of my throat anymore, and I’m kind of sloppy, but I have like presentation cueing, which is very precise, and I stay kind of still when I do it. Then I have, you know, bar cueing when I’m out with my friends, and I’m like, eh, relaxing, you get it anyway, like you know what I’m saying. But like, right?

- Yeah.

- Or in the car cueing when your person’s in the back seat, and like at an angle, like.

- Yeah, yeah. Not something I’ve thought about before. So Cued American English is just the American form of cueing.

- It’s applying the system to American English, which is different than British English, ‘cause our vowels are very different.

- So I wanna get into some controversies.

- Ooh, okay.

- Ooh. So some argue, well, yeah, some argue that cochlear implants have made deaf children essentially hearing. What is your response to that?

- I think deaf kids are always deaf kids, regardless of the device they’re using, because devices break and don’t work, and need to be replaced, or they don’t do what people think they should. And even those who meet with great success with them, I think, still have times without success.

- Right.

- Right? So I mean, I think it’s a great tool for a toolbox, but it’s not great in all situations. And like cueing is a great tool to fill in the holes when your device is off, breaks, or distance means you can’t hear.

- Yeah. Right now, I’m not wearing my cochlear implant. And it’s great. And I get to decide when to wear it and when not to.

- Yeah. I usually, I think I’m an odd hearing person. I fall on the deaf side of things like that. Most of the time, not always. I know there are times when I’m like being hearing-centric, and I don’t think there’s a universal answer for parents or children of how to succeed. Like every family is different, and every situation is different. Like do you have other deaf people around you? Like, I don’t know. If you’re in a rural place with no other deaf people, like maybe you don’t need to know how to sign. Maybe. I don’t know. That wasn’t your question at all, but like, I don’t know, it just depends on the situation. But I do think that cueing is a great path for learning English or traditionally spoken languages. And I think there’s great value in knowing those languages well, because it’s how we communicate in writing.

- Yeah, I mean, yeah, I grew up in a rural area, like in Darnestown, which was more rural when I was growing up in the ‘90’s. And now-

- Yeah.

- It’s a little built up, a little bit, but I was surrounded by cows and horses. And I was fortunate to grow up in a family that cued. And that was so important for me to be in... There were no other deaf and hard of hearing kids for miles, but being able to communicate with my family clearly and effectively was important for me.

- Yeah. And they didn’t know how to sign. If they knew how to sign, that would’ve been great too.

- Yeah.

- Right? Like-

- Definitely.

- Right? Yeah. Yeah, there’s stories in the book about, or at least one, about a deaf ASL, like, deaf-of-deaf family who sent their kid to a cueing program because they valued English so much that they wanted a bilingual kid, and cueing was the best way for that to happen. And the mom and the kid learned how to cue. Yeah.

- That’s great.

- Yeah.

- I admit, I haven’t read the whole book yet. It’s 500-some pages. It’s a big, hefty tome.

- It’s big.

- Yeah.

- It’s big. Yeah.

- So, but I really encourage people to read it. You don’t have to read it all the way through. You can jump around, which is what I’ve been doing,

- What I really love about it is, there are more stories by deaf adults in it than anything else. And it tells their unique paths they took, that cueing allowed them to take. And, you know, many sign, some don’t, some don’t sign or cue in their daily life.

- Yeah.

- But it got them to have, you know, great language skills and go through college, and get a great job. And now, when they see their cueing friends, they cue.

- Yeah.

- But they don’t usually in their life. So you kind of get a flavor for all paths that cueing took people down.

- Well, that’s interesting. I wanted to talk a little bit about that. So as you watch these cue kids grow up and become adults, do you think people feel they belong to broader deaf culture? I mean, I think some feel, I’ve noticed that some go a more or oral path like me, or, I mean, I also have considered myself part of the deaf signing community, but I feel like I see so many people take different paths, like you said. And I wonder sometimes if cueing is accomplishing the goal that it’s supposed to accomplish. Is it more of a bridge between the hearing and deaf worlds? Is it a subculture in itself? Like there seems to be a split, like, in terms of how cue kids see themselves.

- Yeah, it’s a great question. And because I don’t live in that world, it’s not mine to say, really. I feel like I would be speaking for others, and I don’t really wanna do that. But what I witnessed is, there was a time when I had a lot of deaf adult friends, and some groups only signed, and they didn’t know I knew how to cue, because I knew that wouldn’t go over well. So my signing skills were rough enough that I was like, you know, I wanted to be there, and I didn’t wanna give anyone a reason to make me, like, to shun me. And I think I witnessed deaf cuers who benefited from the language they got, and therefore, how they navigate the work world of like being a lawyer or a researcher, or a teacher. And they have great skills, but they don’t tell anyone it’s because they cued, they’re like closet cuers. And it makes me sad. Like why can’t we all just get along?

- Yeah.

- You know?

- Yeah, it’s something I’ve-

- Yeah.

- Noticed as well. Like, and I find myself, when I encounter signers or, you know, other deaf people, I will say, you know, “Oh, yeah, sorry, I’m still learning to sign. I grew up with Cued Speech.” “Hmm?” And I’m like-

- You did?

- No, I’m like leaning in, like, “So what do you think of that?” Like, and it’s always kind of like my way of testing the waters to see like, are you a safe person? Like are we gonna be friends? And I get-

- Yeah, it’s a good, a litmus test.

- Yeah.

- But like varying responses.

- Yeah.

- And like, you know, some people say, “Oh, I don’t like cueing,” or, “I don’t like Cued Speech.” And my reaction to that is, “Oh, so you don’t like Cued Speech, or you don’t like people who cue, or, like, what don’t you like,” you know? And it’s just interesting how people respond. But yeah, I mean, I feel-

- So when I went to an oral school for becoming a teacher of the deaf, right? And I was a strong student there. I was top of the class. And if I say so myself. But like, and when I would go back after learning to cue and becoming this advocate for cueing, they just go, “We lost a good one.”

- It’s such a-

- I was like, “No, no, no. You don’t know.” It would be like your school would be top-notch if you cued, because your kids would have awesome English. And if they could listen, they would. It’s easier to listen, it is. It’s easier to like, heads down, like have a visual break and listen for many people. And if you can, you will. But if you can’t, you are giving access to these kids. Like I had one kid who was 12, who was going to a signing school the next year, and I was tutoring him because his English was so poor, because his audition was so poor, and his visual ability to like process speech-reading was so poor, that, like, he was struggling, and they were like, “Oh, you know, he’s failed, he’s going away.” And I said, “Well, I know how to sign.” And I was signing with him in our tutoring sessions, and I was called on the carpet for it. “No, Amy, you can’t sign.” I’m like, “But, but, but, but can’t I start now with him? He is going to a signing school.” And they’re like, “No, ‘cause he’ll take it back to the dorms.” I was like, “So? So?” Anyway, it was really sad to me that people were like, “No, we’re in this one lane, and you can’t go anywhere.” Like I know, it made me really sad and angry at the time.

- Yeah, it’s so sad that, like you said earlier, Cued Speech is this cast-aside stepchild, and like people are stuck in between, like, the oralist and the manualist, or I mean, I guess cueing is manual, so the signers and the oralists. And it’s just this strange place to be, like, you know? And cue kids have to navigate that as they get older, and everyone deals with it differently, so.

- Yeah. But it’s funny, you know, like my signing-cueing friends, we code-switch, switch all the time. It’s like this concept is better in signing. This one is better in English, so I’m gonna switch and go back and forth between them. And aren’t we lucky that we can do that?

- Exactly. Yeah. I do that all the time with my family. We are signing and cueing, and anywhere in between. I have a therapist who signs, who wants to learn to cue. And in therapy, I’ll be signing, and then I’ll start cueing, ‘cause it just feels better, and like it is great-

- Yeah.

- To have every option available, so.

- Yeah, it’s like bilingual or polyglots in spoken language. I’m like, “You are so lucky, because you can, like, I don’t know”-

- Can learn.

- Right? They can think in so many different ways. Like why wouldn’t you want that if you could have it? And it just-

- So ending on that note, what note do I wanna end on? What would you say to parents with the rise of AI and cochlear implants and real-time captioning? People might think that cueing is becoming, and even signing, is becoming obsolete. What would you say to parents who are trying to figure out, in this moment, what’s the best path to take?

- It’s funny you ask. I’m working with a family right now who is trying to figure this out. Their county is saying they have to cue, they have to sign. And the family is saying, “I wanna cue.” And I’m helping them think about what that looks like. I feel like cueing gives access to the culture of the family they were born into. And since over 90% of deaf kids are born to hearing parents, spoken language is probably the language of the home of some kind, like Spanish or French or whatever. And if you want your kids to learn your culture, then you should cue first, because the language of the home should be first for the kid. But think about adding in signing later, so they have a broader, like, peer group. And it’s like signing serves, it’s so much bigger. Like it’s bigger than this screen, right? If I really wanted to sign, you would miss half of what I was saying, because, like, you’re a quiet signer. I’m like a loud and proud signer. I’m like, take up as much space as I can. But it’s easier like across distances or in groups to follow a conversation in signing, because you can catch the big movement and see, like, understand more easily than the little world of cueing. Like who’s talking, I can’t find them. And now, the half the sentence is gone, and I don’t know what they said, right? It’s just harder in a group. So I would say the language of the home should be first through, and if usually spoken. And if so, cueing will help the family communicate easily, and just be, like, easiest way to get the kid to be part of the family. And isolation is the worst part. And sitting and not understanding what’s happening sucks. Like I hate being in a room where everyone’s speaking French. Lost. I don’t know. This is what it’s like.

- Yeah. Yeah. It’s so important to... I mean, I think that’s such a good point, that cueing gives access to the culture at home. Like, I hadn’t thought that far, that, you know, you’re giving people, you know, your kids, the world that you live in, or the, you know, language that you speak, but also the traditions and everything that comes with being a person.

- Yeah. Yeah. And like I like having the biggest toolbox available to me. I don’t want just a hammer or a screwdriver. I want all the tools, tools I can. So I feel like cueing is a great first starter tool, and then add to it, like adding in the listening devices, but you don’t know if they will work or not. So why not cue in case they don’t?

- Yeah.

- You don’t wanna lose time.

- Right.

- Right? So cue. And if they can listen, they will.

Needs Editing is a reader-supported publication. To receive new posts and support my work, consider becoming a free or paid subscriber.

In this first episode of Needs Editing, we talked about our first date, Dinner Table Syndrome, COVID being the pivotal moment that made him decide to start cueing more often with me, and about why we’ve committed to cueing 100% of time before our daughter arrives in a few weeks.

It’s ultimately a conversation about clear and effective communication, and why it’s so important for deaf and hard of hearing people—and anyone, really!—to have it.

Thanks for watching, and please feel free to share it with others. Transcript is below, and apologies if it or the captions are a little wonky—I’m still working that part out!

Transcript:

Sarah (00:00:03):

Hey, so I’m Sarah.

Jonathan (00:00:06):

I’m Jonathan.

Sarah (00:00:08):

And this is the first episode of my new podcast, Needs Editing, which for now is going to explore the deaf experience broadly. And Jonathan, you’re my husband. And so we met in 2011 and I’m deaf and you’re hearing. And I didn’t tell you that before our first date. I just showed up.

Jonathan (00:00:45):

But I think I sort of knew I think I like Googled you and saw you were like connected to some like deaf board or group or something. And so I had like an inkling. I wasn’t totally surprised. I didn’t know, but I wasn’t like totally surprised.

Sarah (00:01:14):

Okay. It’s funny because we’ve been married for like 15 years and I’m still learning things. Not married but together for fifteen years. What?

Jonathan (00:01:27):

I’ve definitely told you that before.

Sarah (00:01:30):

Okay, whatever. But yeah, I was really young. I was 22 and I’m 37 now. I remember I was really nervous and I was oversharing about everything. And that was partly because... I was such an anxious person, but also because I wanted to filter out anyone who maybe weren’t (sic) serious. And so it worked. I charmed you.

Jonathan (00:02:13):

That makes sense. You were very charming. I remember I got us lost on the way to a gelato shop. I didn’t look at the map and I was just like, I’m a man, I can find it.

Sarah (00:02:31):

I remember that.

Jonathan (00:02:33):

But it took us like hours because I was so lost.

Sarah (00:02:38):

Yeah. So what was your first impression of me? Like, so you knew I couldn’t hear very well — or was it more like something you realized gradually, or?

Jonathan (00:02:58):

Well, I mean, as soon as we met, I realized that you were deaf and I had never really interacted with a deaf person before. I mean, I’m sure I’ve met deaf people, but I’ve never like really closely interacted. So I didn’t know much about, well, I knew nothing about the culture. And I didn’t really know much about accessibility. I remember I asked if you wanted to see a movie. And you said yes. And I was telling someone later about that. And they were like, well, how could she enjoy that? And I was like, oh, well, she just reads lips. But I didn’t think about how in a movie, you’re not always seeing a person’s face head on. Even if you were the best lip reader in the world, you couldn’t watch a movie that way. So I never thought about those things. And getting to know you was very educational for me on a lot of those issues.

Sarah (00:04:29):

And I remember during that date, I initially said yes. But then I later was like, actually, I can’t. Yeah. Because I won’t understand the movie.

Jonathan (00:04:42):

Right. Which is good. I’m glad you told me that. I think you actually told me that like 15 minutes.

Sarah (00:04:51):

I know.

Jonathan (00:04:51):

Before the end of the movie. And I was like, but I want to see. Yeah. Well. We went. We went. And it was like this. Yeah, yeah, yeah, yeah, yeah. We went. And it was this super tense foreign. Oh, it was a foreign film. So it was subtitled. Never mind. And maybe this was later on. I don’t remember. But I remember you being like, I’m bored. Let’s go. And it was like 10 minutes left in the movie. And I wanted to see what happened. But I was like, Okay, we can go. Yeah.

Sarah (00:05:36):

We haven’t explained to anyone that we’re using Cued Speech as a visual communication method that some deaf and hard of hearing people use to communicate. And it shows spoken languages visually. So, can you remind me — I don’t remember, um, how you started learning to cue? Did I teach — did I tell you to do it, or did you volunteer, or what?

Jonathan (00:06:14):

So I had never heard of it, as most hearing people haven’t. I had, of course, heard of ASL and just assumed that every deaf person wants to use ASL. So I think you told me about Cued Speech like right away or on our first or second date, like it was soon. And you never asked me, but I wanted to learn it because I liked you. So I wanted to learn it. Right away. And you taught me some. I studied a lot — I was taking the bus to work back then, so I would study on the bus. And I memorized the placements and positions pretty quickly. I always like to tell this story, as you know, but for the viewers, Sarah told me when we first met a person with average intelligence can become fluent in cueing in 48 hours. And so it’s now 15 years later, and I’m still not fluent. So that tells you about my intelligence levels. But... But my point is that it is very easy to learn the basics but it takes a long long time to get to a point where you can do it quickly enough for it to really work as a main mode of communication. I should say that part of that is me not practicing as much as I could have or should have. Like, I didn’t really start practicing super diligently until COVID. COVID, Sarah, you had to go to the hospital and I was not allowed to visit. And the only way we could communicate was through your phone on video chat and you could not hear a thing. So I had to cue to talk to you and that was the motivation I needed to really like bear down and practice a lot. I mean, I should have done it much sooner. But I always felt that you could understand me pretty well. And I think one of the things you and I are both realizing now or lately is that a lot of times like hearing people will decide what accessibility is necessary. And that’s really wrong. We hearing people need to listen to deaf people about what they need and you are a very kind and agreeable person and you never strongly advocated for me to get a lot faster or better. Because I would cue like with my family and you’d get so frustrated, because I was so slow, you’d be like, just don’t even worry about it. But that’s on me, because I needed to put in the extra work to get there for you, and I always told myself you didn’t really need that, but I should have listened to you more.

Sarah (00:10:25):

Well, I mean, I should also add that I’ve been very like wishy-washy about that. Like I haven’t, I’ve spent a lot of years just not owning my accessibility needs. And it’s only until recently that we started cueing all the time. And it’s made such a difference in terms of not just my access, but feeling like, um, like I’m cared for like that. Like that balance of communication is not out of whack. And I’ve always felt cared for by you, but it’s a different level.

Jonathan (00:11:16):

Yeah.

Sarah (00:11:17):

Yeah. And I’m sorry I’ve told you that you’re too slow, because that didn’t—

Jonathan (00:11:25):

I was and am, so I’m still trying to get better.

Sarah (00:11:31):

You’re pretty good.

Jonathan (00:11:35):

It’s a work in progress. If I have a drink or two, okay, this is an argument we have a lot. I believe that I cue much better when drunk because I’m not thinking as much about it. But Sarah, you’re like, no, you cue much worse. So maybe it’s just in my head. Or maybe I’m really fast when I’m drunk, but the signs are all wrong. The cues are all wrong because I’m drunk. I don’t know. But that should be studied, I think, in a lab.

Sarah (00:12:20):

Oh, definitely. So we’re having a baby soon.

Jonathan (00:12:27):

We are.

Sarah (00:12:28):

A few weeks. And so we’ve decided that we’re going to cue 100% of the time so that she knows Cued Speech. Why is it important to you that she learn to cue?

Jonathan (00:12:51):

Well, I mean... It’s not really that important for me. It’s important for me to have you be able to communicate with her like completely fluently. She needs that from her mom, and you need that from your daughter. So it is important to me for that reason, but it’s on behalf of your relationship with her. I mean, there are other benefits. I do believe like even if we were both hearing, I think cueing is probably a great tool, a literacy tool for young kids because it helps teach phonics, I imagine. So I’d probably be in favor of it just for that reason, too. But, I mean, it’s really important that you feel included in everything that she says, you know, from the start.

Sarah (00:14:10):

Yeah, I agree. And I’m glad that we came to this conclusion now before she arrived so that there’s no confusion.

Jonathan (00:14:24):

Yeah, and we’re going to sign as well. Yeah. Which is cool because I don’t know many signs at all. So I’m going to learn along with her. I just have to stay one step ahead of an infant.

Sarah (00:14:48):

You do? Yeah, we both do. So...

Jonathan (00:14:57):

Well, do you want to talk about the challenges of being married or dating a hearing person? And how we’ve navigated that? I mean, I know it hasn’t always been easy.

Sarah (00:15:23):

I mean, I know when we’re with your family, particularly your mom and sister, I really struggle a lot with following them sometimes, both of you, because they do speak primarily. And I’m looking at you sometimes, but I’m often tuning out. I do that in a lot of hearing settings. I just kind of tune out, and it’s called Dinner Table Syndrome, where deaf and hard of hearing people just feel disconnected from their hearing environment. And that’s one of the challenges.

Jonathan (00:16:15):

Yeah.

Sarah (00:16:17):

Yeah. Yeah. We haven’t really navigated that much yet, you know, in terms of, because I haven’t seen your mom and sister in a while.

Jonathan (00:16:34):

Yeah. Well, yeah, those situations can be tough, I know. And sometimes my mom is immunocompromised, so I will wear a mask. Around her often when we’re indoors and that makes it even harder because you can’t see my lips if I’m trying to transliterate for them They never worked. We tried clear masks but they would get foggy really quickly and they would slip out of position and I’m not even sure if they’re really like medically sound. But, I mean, it was a good, it was necessary during the pandemic because so much of the world was masked. You were really at a difficult position then. Yeah.

Sarah (00:17:52):

Okay.

Jonathan (00:17:58):

I thought you had like a list of questions.

Sarah (00:18:01):

I did. I had a lot of questions and we went through them.

Jonathan (00:18:04):

You did?

Sarah (00:18:06):

We did.

Jonathan (00:18:07):

Oh, okay. Cool.

Sarah (00:18:11):

One question is, uh, what do you wish people knew about Cued Speech or about loving someone who cues or anything related to cueing?

Jonathan (00:18:27):

So I think that cueing is amazing. It allowed us to get to know each other much faster, like to communicate. I mean, we’ve never... Had too much trouble in like quiet one-on-one situations not to say it that doesn’t still require you to do extra work I know it does but it has never been like an insurmountable barrier but noisy situations We could not navigate without cueing or unless I became really good at signing quickly, which I’m not very good at languages. Um so having cueing was really helpful um for us as a as a way to bridge our uh gap um especially early on um in the relationship um you were able to teach me right away um and I was able to learn fairly quickly um So I think it’s a great system. I wish more people used it and knew about it. But I also do understand that it’s controversial in the deaf community because it was invented by a hearing person and has associations with kind of oral traditions. And I don’t want to kind of gloss over those difficulties. It’s easy for me as a hearing person to say everyone should learn Cued Speech when I’m a beneficiary of that. And again, it’s not really about me. It should be about the people who need the accessibility to incorporate into their daily life, not my comfort levels. So I’m sensitive to that. But I do think that as we talked about a little the literacy uh benefits and the um the way that um oh I I wanted to talk about this like Cued Speech gives you access to the sound of language language the the musicality of language and I know that signing has its own musicality and beauty, not saying it doesn’t, but spoken English and other spoken languages certainly do too. Deaf people should be able to access those things if they choose. And you in particular have a very advanced oral proficiency, or I don’t know if it’s just a talent or a knack for oral language, in poetry and music and lyrics, and that only became accessible to you through cueing. So I feel like there may be countless Deaf people in the world who might have those same talents and proclivities that will never be able to, will never know or realize it because they lack the technology of accessing those sounds without hearing.

Sarah (00:22:37):

Well, I mean, I do think that we can be a little too over-focused on sound. Like there’s a whole world of language out there other ways of existing in the world and being in the world.

Jonathan (00:22:56):

For sure.

Sarah (00:22:57):

And that while there are certainly benefits to accessing musicality and language, like you said, there’s a musicality in ASL. I don’t think, I think it’s important to I don’t know, not state it as a lack necessarily, but just as an opportunity.

Jonathan (00:23:24):

I think it’s a bonus. I mean, like you can live a perfectly happy life, never tasting pizza, but pizza is amazing and everyone should get the opportunity to enjoy it. So I feel it’s like that.

Sarah (00:23:45):

There are many ways to enjoy a pizza, you know?

Jonathan (00:23:50):

I mean, like looking at it, smelling it, those are okay, but you want to eat it because it’s so good. I mean, you don’t need it. You can get, there are many other pleasures in life, but why not give people access to something that brings joy to many and spoken language does. And especially like you have always loved the sounds of poetry and, you know, some of them.

Sarah (00:24:29):

I do want to emphasize, though, that Cued Speech is not giving access to sound. It’s giving, it’s clarifying sound, but you can enjoy spoken language without hearing it. Right. And so I think that’s an important distinction.

Jonathan (00:24:56):

No, no, no. I mean, I’m saying as a deaf person, the only way to enjoy spoken language is without hearing it. Right. Like. I mean, I know that you have some hearing and most deaf people do, but sort of definitionally, as a deaf person, you’re trying to enjoy spoken language without having that hearing aspect. That’s what Cued Speech allows that wouldn’t be possible, I think, without it, unless there are other modalities that I’m unaware of. Like maybe we watched that video of a person who held a ball and felt the vibrations in the ball. So maybe there are other ways like that. This is a very kind of straightforward way for Deaf people to get access to those phonemes and be able to play with those lyrically, which can be fun.

Sarah (00:26:22):

Yeah, I agree. But I also think we have to be careful of being too limited in our thinking about what can be enjoyed.

Jonathan (00:26:39):

Yeah. Well, I mean, you could say all the same things about signing. There’s just as much beauty and poetry in signing, and I’m just not fluent in it, so I can’t appreciate it. And you could say that’s like my pizza, right? Like I’m missing out on that. But there’s a way for me to access that, which is learning sign. Most, many, I shouldn’t say most, but many people do not know that there’s a way to access spoken language as a deaf person using Cued Speech. And I think that’s the shame is that people shouldn’t. Shouldn’t be forced or coerced to use it or learn it, but they deserve to know it’s there if they choose to. That seems to me like the value of broader awareness of it is giving deaf people the option, letting them decide if that’s something they’re interested in, just as a hearing person can decide for themselves if signing is something they want to learn. And many hearing people do. I think you told me that signing is like the most common foreign language studied in the university now or one of, which is really cool. A lot of hearing people do want to learn it and they should definitely have that option.

Sarah (00:28:18):

I also, to your point, I think also, you know, I am contemplating getting my cochlear implant removed. I know I still have to get a second opinion from another cochlear implant surgeon. So I have a cochlear implant in my left ear and a hearing aid in my right, and I got it in 2022. About four years ago. And unfortunately, I’ve been having pain where the cochlear implant is at night when I’m asleep. And I wake up and I’m like, oh my gosh, it’s so painful. And it’s really severe pain, like not just a little pain, which, you know, is making me think like I might just be deaf in that ear. And I haven’t been wearing my cochlear implant that much. But like here I was someone who got a cochlear implant and was trying to make it easier for me to communicate with hearing people and navigate the hearing world. But now I might be taking a few steps back So it makes the cueing even more important.

Jonathan (00:29:49):

Well, it’s funny because I was just saying dumbly, there’s no other technology I’m aware of that. Yeah, cochlear implant. Now, I would say that You should have the option to enjoy the spoken language without having to have cranial surgery, which is a pretty extreme intervention. But... That’s another technology that is very popular, and a lot of people like it and some people don’t. I feel bad that you didn’t get from it what you hoped for, even without the pain, which is obviously not OK. I don’t think you really got what you hoped from it, which is probably just a function of people reacting differently to it. You know, bad luck.

Sarah (00:31:01):

Yeah, I mean, for me, the cochlear implant has been just too loud. I’ve worn it. I did wear it consistently for about two years. And then after two years, I started wearing it less. And I never quite adjusted to it. I have worn it daily for about five hours a day. And then, just like over the last year or so...

Jonathan (00:31:40):

So this is how Sarah wears the implant. As long as there’s perfect silence in our house, she will wear it. But as soon as like I make like one sound, she’s like, that’s it. It’s coming off.

Sarah (00:31:58):

It’s so loud. And maybe it’s just because we’ve been married for so long.

Jonathan (00:32:06):

I’m just teasing. Yeah, I know.

Sarah (00:32:11):

I’m saying that jokingly.

Jonathan (00:32:15):

I’ve got a question for you. If our daughter were born deaf, which I know you’re still hoping happens, would you at all consider a cochlear implant at a young age before the age of her being able to make that decision?

Sarah (00:32:41):

Think so I mean just based on my own negative experience with it and also I want her to make her own decisions about that because it’s such a it’s kind of a traumatic experience like like you’re you’re having to adjust to

Jonathan (00:33:06):

But it it becomes more traumatic the longer you wait probably right um and so and then the question becomes like what age is she really able to make that just like you can’t like 18 like 18 adult and at that point You’re going to she’s going to have a difficult time adjusting. So, I mean, I think I’m not saying I would be in favor of it either. I’m just saying I think the argument would be from those who would support that is that you do it young to prevent the difficult transition later in life.

Sarah (00:33:55):

Yeah, I mean, we would be offering her a fully accessible environment. She would certainly experience challenges in life because of the world we live in being inaccessible, but I do think it’s possible and I’ve seen my deaf and hard of hearing friend be able to succeed without the program. Right. I think it’s certainly possible. It just requires commitment to creating an accessible environment at home and making sure that she would get a strong language foundation.

Jonathan (00:34:50):

Would you be amenable to her going to a like ASL only school, like a residential school? I’m just, no. I mean, it’s interesting because, sorry. No, no, no, answer. You go ahead.

Sarah (00:35:14):

Good question. I’m not sure. I don’t think so. I mean, in my ideal world, she’d go to a bilingual cueing, signing school where she had access to both, but that’s not a world we live in. So I’m not sure, but I can’t imagine sending my daughter to a school and not having her be with me all the time. So I think I would, you know, in that hypothetical situation where we had a deaf daughter, which we don’t know what we’re going to get. Um, I think I would try to create a condition, similar conditions of exposure to ASL in different ways. Like, I don’t know.

Jonathan (00:36:17):

Like, I don’t know what yet, but.

Jonathan (00:36:17):

Yeah, that makes sense. I think there are still some cueing programs in Fairfax County, is that right? And maybe fewer in Montgomery County.

Sarah (00:36:41):

County yeah and you know I have been writing about my experiences growing up in a program in a mainstream school setting, and I haven’t quite articulated my thoughts about that yet. So I’m not going to comment yet on how I feel about that yet.

Jonathan (00:37:09):

Sure. That’s fair. Well, I appreciate you having me on the podcast. I’m a big fan. First time caller. Long time listener.

Sarah (00:37:24):

Thank you for following along. Bye. Bye.