All About Sign Language – Episode 15 with Kimberly Sanzo
Welcome to the all about audiology podcast. I’m your host, Dr. Lilach Saperstein. I’m an educational audiologist and the reason I make these podcasts is for you. When parents are informed, educated and empowered, they are the best advocates for their kid and if you are listening to this, I’m really glad you’re here. And if you know someone who is going through this journey who has a new diagnosis or a child with a hearing loss or is in any way connected to today’s topic, please send them this podcast.
Today’s topic is about sign language and deaf education, language deprivation and brain development. These are big and important topics. If the ultimate goal is to provide auditory access for the development of language in order to access learning and communication, then if speech is not the route towards that, we need to examine why we are leaving out a major modality which is sign language. I know that this can be a bit of a difficult topic and for some people this might hit a nerve but I really hope that you’ll listen. I invite you to join in our no judgment zone, you can join the Facebook group where we can continue the conversation and I’d love to hear your input on our conversation.
I’m about to play an interview for you that I had with a wonderful speech language pathologist named Kimberly Sanzo. Kimberly is a speech language pathologist at a residential school for the deaf. She received her masters from Gallaudet University and she is fluent in ASL. The majority of her current work is with deaf children who experienced language deprivation. We are going to talk about that a lot. She spends her free time raising awareness about the detrimental effects of language deprivation on brain development. Kimberly and I had a really honest and passionate conversation. We both have a lot in agreement about the information that needs to get to parents and to cochlear implant users. I’m Dr. Lilach Saperstein and this is the All About Audiology podcast.
Dr. Lilach Saperstein: “Welcome Kimberly to the All About Audiology podcast.”
Kimberly Sanzo: “Thank you. Thank you for having me.”
LS: “I’m really glad to have you here because you are the expert in language deprivation for children who are deaf or hard of hearing and I think you are going to be able to share so many ideas and resources with us. And most importantly advice for parents, so to start can you tell us a little bit about yourself and your journey?”
KS: “Sure. So I went to graduate school at Gallaudet University and at the time that I was there I wasn’t as big a proponent of ASL as I am now. I still believed that some kids didn’t need it and others did. It wasn’t until I started working at the school for the deaf in Connecticut where I saw first hand what happens when children are not given early access to sign language that I really kind of realized and revised my beliefs that every deaf child needs access to sign language, a fully fledged language not a sign system. That was kind of where I started my whole social media campaign and creating Instagram and Facebook accounts to raise this awareness because a lot of people don’t realize how important this is.”
LS: “Okay so I’m going to ask you to tell us and define some of the things you just said.”
LS: “Number one, tell our listeners if they don’t know, about Gallaudet University and what that’s all about.”
KS: “Sure. Gallaudet University is one of two universities in the US that is for deaf students. So all of the classes are instructed in American Sign Language. For Gallaudet at least the undergrad population is 100% deaf or hard of hearing. They have to have some sort of hearing loss. The graduate population is about 50 % hearing and 50% deaf, so I was a minority. [laughs]
LS: “I actually went to a campus tour to see the audiology graduate program.”
LS: “Yeah I was there with my parents in the summer and the tour was given by a deaf student who then had an accompanying interpreter interpreting in English. I was already in audiology at that point so I was familiar and aware that this was going to be the setup. But my parents were shocked. For them it was a total cultural shock to see a student who was giving the tour and leading the tour in sign language. The student giving the tour was an undergrad, a young, sweet girl showing us around her campus and the interpreter was this middle aged woman and it was like she’s telling about ‘here we go swimming and here we go…’ saying it in a frilly little voice. And my parents were like, ‘It’s so weird. She’s an older woman pretending she’s a younger woman.’ It definitely opened their eyes which started a conversation about deaf culture and deaf identity, something that if you are not ever exposed to it or you never encounter it, you don’t think about it.”
KS: “Yeah, exactly.”
LS: “Also it’s a gorgeous campus. Whoa!”
KS: “Isn’t it? Yeah.”
LS: “It’s beautiful. I ended up staying in NY for graduate school but it was a beautiful tour. So anyway there is a big focus on deaf education, so tell us a little bit more about that.”
KS: “So yeah, our coursework actually required to take up to a certain level of American Sign Language and within the graduate coursework we were required to take certain clinical sign class so that we knew how to communicate. So in addition to all of our grad courses like a normal speech pathology graduate program, we had all these ASL classes on top of it too.”
LS: “My second question for you is if you can tell us more about ASL, American Sign Language…
LS: because some people are not really aware that it’s a full fledged language…”
KS: “So when people ask me questions about ASL, a lot of times the questions indicate that they don’t believe it’s a real language. So if they ask the same question about French or Spanish, you would be like, wait, what? Obviously (it’s a real language). When they ask about ASL it just shows that they don’t have experience with it and they think it’s some sort of gestural system. American Sign Language is a full fledged language just like any other language. It has grammar and sentence structure that’s different than English. What we find is that when kids are given this language early, their brain develops just like they are given any other language early on. The problem is that when they are given a sign system, meaning they are signing English, where every single English word has a sign that corresponds with it, that’s not sign language. That’s when you start to see they don’t develop a true language because that’s not a language. So if they are given true American Sign Language with its grammar and structure and everything, that is a true language.”
LS: “I remember seeing your post about this that was “What do you mean, everyone in the whole world doesn’t speak the same language, sign language?” But if you would have said, everyone in the world doesn’t speak French? It was like Esperanto did not work out and that was a deliberate attempt to make an international language and that did not work very well. I hope we won’t get the Esperanto Reddit on our tail for saying that. [laughs] But each developed in their own cultural and historical context and they are very different. And then there are some languages that are similar, like Israeli sign language is very similar to German sign language because it was German teachers who had come just like American Sign Language is similar to French Sign Language because they are the ones that came.”
KS: “Yeah, Laurent Clerc.”
LS: “There’s a lot of education that has to go on it, and when you have a parent who just had this sweet, angelic little baby and now they are deaf, now they have to learn a whole new language. And that’s totally a unique “problem” with a “disability”, whereas a child that is born with a heart condition or any other issue that doesn’t require a huge mentality shift and language shift and educational shift. So I think
KS: “Yeah, exactly.”
LS: part of the magic of this field, the considerations are so unique for deaf children vs. other so called disabilities because they also include their access to communication and relationships and education.”
KS: “Exactly I know. And it can be overwhelming I think for parents because they have this feeling I can either implant my child and use my language with them which would be way easier or I can learn a whole new language and that’s so overwhelming. But the truth is they don’t have to become fluent in sign language, right, as long as they have a community or a deaf person, even one deaf person that they can come into the home and babysit their kid or teach them a little bit. As long as the child has a native model, the parent doesn’t have to be a native model.”
LS: I’m thinking about all of the people who have a Spanish speaking babysitter and that their children speak Spanish before they speak English, because they spend more time with the babysitter.”
LS: “So it’s a lot about exposure.”
LS: “So I love this idea of either/or, which I talk about a lot on the podcast. I’ve talked about that from the very beginning. If people don’t even know their options, they are given it in a very binary yes or no. You are getting a cochlear implant and pretending there is no deafness here, or you all have to move to Maryland and that’s it.”
LS: “So do you see that there’s a way to combine those two? How do you see it?”
KS: “Yeah. So I think that the either/or thinking is the most dangerous thing because it makes parents feel like they have to choose one and that has to be the right answer. And of course the people who are educating them are biased towards the spoken option and so what you see is that parents then choose that option. I think that in an ideal world if a deaf child has an opportunity for both, so they can get implants if the parents want, they can obviously get hearing aids. I’m not against learning the spoken language. But in addition to that they should also be learning American Sign Language, that way, first of all the child has two languages to work off of right? So if one language ever becomes inaccessible, ie the spoken language, they will have sign language to fall back on. Second of all, the child will be able to choose what language works best for them so when you have a baby you don’t know what else is going on in that baby’s brain. Right? I’ve had kids with apraxia of speech, and you can’t tell that until they start to talk. So for years they are not able to express themselves and their parents don’t know why. If they had sign language they could bypass all of that. So it is my firm belief that the child has the right to choose and the child can only choose once they are older, therefore we must be giving them both options until the point where they are able to choose.”
LS: “I’m thinking about a few Instagram and Twitter accounts that I follow that are personal accounts of teenagers and young adults who are saying, ‘Hello world, I have my own access to a phone, I have my own access to a community, look at what I was deprived of until now.’ And they are like claiming that and it’s really inspiring to see these young people now in this climate. Fifteen years ago before all this connectivity, what would have happened to that person’s life getting smaller and smaller?”
KS: “Yeah, that’s the other piece too. We have to listen to these deaf teenagers and deaf adults. When they are saying, ‘I wish my parents would have learned sign language, I wish they hadn’t pushed me or forced me to be oral, learning to lip read was really hard and I struggled and I was isolated and I couldn’t talk to other kids.’ We need to listen to them when they say that because that’s true. It is incredibly isolating to be forced to do something that’s so effort-full for you, but that’s effortless for everyone else. So instead, we should be giving them a language that’s 100 percent accessible and that they can always talk to their peers, one on one, they don’t need an interpreter, right? That is giving your child more than to force them into something that’s too difficult for them.”
LS: “So then to play the other side, what we hear from other parents is, ‘My child is going to succeed and they are going to be typical, and they are going to go to college and they are going to do all the things they are going to do.’ I specifically have one parent who said to me, ‘My child has been accepted to a masters degree in computer science at such and such school etc. and you don’t get there with sign language and AVT, Auditory Verbal Therapy, I fought for that. I brought him to every appointment,’ kind of being very defensive and strong about her belief that she had saved her child, that she had given him every opportunity. Which is not wrong, I mean, all the things she is saying that came, he did need spoken language for those opportunities, but that’s in his case, so that’s anecdotal obviously. But what you would respond to that parent, and then I’ll tell you what I told her.”
KS: “There’s a couple of different things that she said there. One is that her child is different, right, and her child can succeed and can only do that with spoken language. That is a huge misconception. Having worked in a school for the deaf for six years, I have worked with deaf adults. My superintendent is deaf, my principal is deaf, I’ve had deaf colleagues that can all write English better than I can, and I’m a very proficient user of English, and that are more successful than I am, that are getting their PHDs. That’s not a thing to say that you can’t do that without sign language. That would be like saying I can’t get into a master’s program if I only spoke Spanish. Yes, you could, it would just be a Spanish speaking program, you know what I mean. That again just shows that they don’t think that American Sign language is a useful language that helps grow the brain, which is a huge misconception. The other thing is that picking one anecdote out of a field of a million and coining it as the prototype, is not good. So this one child may have done well and I see this a lot on Facebook, people commenting and saying that ‘my child did well…’ That’s great for your child but that’s actually an exception as opposed to the rule. The rule for the most part is that these kids are drowning in auditorial-only environment. Drowning to access academic information when they are only getting it through their ears. So it’s great that your child did well and I’m happy for you, but you can’t apply that to every other deaf child. Every child is very unique and individual and because your child did well doesn’t mean that all deaf children just need to do what he did.”
LS: “Yeah and also, to add that her adamance that this was going to happen and the fact that she “made it happen” where she took him to every appointment and always had his mapping and 100% years on and that the cochleas were always working. That means that that child had a set of very different circumstances. The other child didn’t have the tiger mom taking him to every appointment four times a week, and didn’t pay for the equipment when it breaks and batteries die, all the things that as an educational audiologist I was seeing that the kids were using it 20% of the time if that, if they weren’t motivated internally or externally to be doing so.”
KS: “The other thing that’s interesting, is that people tend to put causality on things that are not actually caused by this thing. So in this case, the mom is saying that her actions caused her child to be successful with AVT. I would argue that what caused him to be successful with AVT and spoken language is probably the age at which he was implanted, and I’m going to go out on a limb and say that he was implanted very, very young. And two, that his brain was able to process that information so he had no other neurological issues, nothing that would bar him from being able to process that electrical input. That to me is more what caused his success. So let’s say that mom had another kid and did the exact same thing. Same mom, nothing is changing with her tenacity and her tiger mom attitude, but the second child didn’t have the same brain and that brain didn’t take to the implant the way her first child did. So you can’t say that the mom’s tenacity caused the child’s success. You know what I mean?”
LS: “Exactly. You even see that it’s one factor out of a billion because there are plenty of children without hearing loss who have various degrees of success and have various degrees of language.”
KS: “Exactly, exactly.”
LS: “I think it’s an issue in the world of audiology memes and activation videos that are inspirational, and I fight against that quite a bit in my friends and family. You are seeing four seconds out of a journey that’s like years long.”
KS: “Oh yeah, don’t get me started on that.”
LS: “You and me are like, ‘what are we doing here. where’s the rest of our listeners.’ “
KS: “I know.”
LS: “Yeah, maybe that’s another issue that it becomes an echo chamber, that people who agree with each other stick with each other and that’s really a problem. That’s why I’m making the podcast to try and reach more people that will just understand that the processing of hearing is a much bigger thing than your ears. Which brings me to your project, The Language First Lab. So tell us a little bit about that.”
KS: “Yeah, sure. So I created this account separately from my other social media accounts because I wanted it to focus solely on raising awareness of what happens when a brain is deprived of a usable L1, meaning first language. So language deprivation is when somebody is not given a usable, naturally occurring language in the first five years of life. And so there’s varying degrees of it, like you could be on one extreme where you had no language whatsoever and that would be like Genie, the famous girl that had literally nothing, nobody talked to her, nobody touched her for like 13 years of her life. That’s very extreme. But it’s a spectrum so it can go all the way to the other end where they are getting a good amount of language but still not enough to create a strong foundation of kindergarten readiness for academics. So this is what we see with deaf kids who are language deprived.
So there are two different ways to experience language deprivation. One is a deaf child who has implants and hearing aids but doesn’t get good use out of them. So maybe they are only wearing them a certain part of the day, or when they are wearing them their brain can’t make sense of the information and so really there’s no point in wearing them anyway. And so what happens is they appear to be getting language access because they have the auditory equipment but their brain is actually not getting any language to it. So that leads to language deprivation. Then hand in hand with that is that if that child were afforded a sign language where they can get all the information through their eyes, that would solve their problem. Unless they are blind the information is coming through their eyes.
So I really wanted to raise awareness on this because I found that parents were being maleducated by professionals and professionals truly believed that what they were saying was true and this was resulting in kids having irreversible…it really is like brain damage. The reason I created the account was because I was noticing that professionals genuinely believed that they were educating parents properly, and I used to be one of them. I believed that not every kid needed sign language and this was just a once in a while occurrence and it wasn’t that common. But what I was finding is that it’s actually incredibly common and most of it can be traced back to properly educating the parents. So for example, the cases that I have now are like 90% language deprived deaf kids. And what you see is that because they didn’t have adequate language input in the first five years of life, their brain didn’t develop properly. So there are cognitive functions that they struggle to perform. Like sequencing events, like when you are telling a story you have to tell the events in order, otherwise the person listening is like ‘What?’ So this is what happens, the kids can’t sequence a story in the order that it happened. They have poor memory recall because language directly affects your ability to remember things. If you can apply language to an instance in your life, (for example,) last time I went in a car ride, I was really bored. And so now that I know that and I can think about that, next time I go on a car ride, I can plan out that I better bring something to do so that I’m not bored. But in order to plan that out, I had to remember my last time in the car being bored. So all of that is surrounded with language. If you don’t have the language to think about that and process that, then you can’t remember it and you can’t plan for it. So you find that these kids have memory deficits, planning deficits, deficits with sequence and time, things like thinking about things abstractly, things that if it’s not here or right now, or if it’s something that I haven’t experienced personally then I can not conceive about what you are talking about. So you see a lot of really significant cognitive impairment.”
LS: “Wow. I think that was a wonderful explanation of what language is in general. I remember that one of the first undergrad courses is learning about what separates bees communicating where the hive is from real language and it’s like talking about something that isn’t present in time and isn’t present in front of you, like physically. So talking about what happened another day or talking about someone who is not there.
LS: “Tell us about the students that you see. Do they have equipment, what’s their setup?”
KS: “Good question. So out of probably 150/160 students at the school, about 50% have cochlear implants. From that 50%, a good percentage of them, a good majority don’t either use them regularly or don’t make good use of them. So they might have them on and on but nothing’s really getting to the brain. There’s a big causality debate, where it’s like if they wore their implant more often would they get more benefit or is it too late. So we know that once the brain is developed you can put that implant on and the brain is not going to be able to make sense of the information. So because they have gone so long without being able to make sense of the information, now that let’s say they are 13, they are never going to be able to. You can put the thing on and do AVT all day, every day and they will never make sense of that information. So majority of the kids at my school have come because they weren’t able to make good use of their implants. There are a good majority with hearing aids too, again because they have all kind of not done well with the auditory access and spoken language. Our school focus is on instruction through American Sign Language because that’s accessible.”
LS: “What would you tell parents who are at this stage where they’ve had a diagnosis and they need to make a decision? They are on track for implantation because that seems to be what’s recommended right away. I can certainly understand it because you are saying here is a medical problem, here is a medical solution. It’s almost like all the other aspects; socialization, academics and language are not on the table when you are looking at it from a medical model. So if you are in a doctor’s office and the doctor or surgeon is telling you here is a medical problem with a medical equipment/solution, a surgery with this miraculous device, which it is miraculous, why would that parent even think to ask these questions and how would they even get to you or to information about this?”
KS: “That’s a good question. This is probably the biggest problem because it varies from state to state and then obviously some more rural parts of states there are less resources on American Sign Language. So what we find is that people who live in big cities and that live near deaf schools and stuff like that, deaf communities, have better access to our side of the resources. So that is a big issue but I would hope that the parent who is seeking the medical answer, that’s great, I don’t want to discourage them from seeking the medical answer, but I want them to also consider that the medical answer might not be the answer. If for any reason and there are a multitude of them that your child doesn’t do well with the implant, you need to have another way to get language into their brain and that fool proof way is through their eyes. So there are a lot of resources through early intervention systems where you can request American Sign Language, either instruction or have Skype sessions or have someone come into your home to work with your child and sign with them, but again it varies by state and so it’s tough that there is no standardized method, standardized way to get the information out there. So maybe that should be the next thing that I work on in Language First.” (laughs)
LS: “I think that there’s just a major bias where the information you are getting is from the medical perspective and from the companies.”
KS: “In an ideal world, in a perfect world, the way I see it is the team that the parent meets with first when they are first told that their child is deaf, the team should include the otolaryngologist, the surgeon, the audiologist, speech pathologist, but then it should also include a teacher of the deaf, an ASL fluent teacher of the deaf, a deaf person, a deaf community member, it doesn’t matter who, just to offer that perspective. Because you are right. That’s the problem. They are only meeting with the people that are very focused on one perspective so they don’t get access to the information on the other side.”
LS: “One of the posts that you posted about, was a citation about the breakdown of the students who get into the research studies that are showing the ethicacy and success rates and language acquisition rights and all the things that we see with our CI (cochlear implant) superstars, but they are like a small minority of the actual user base who have them ex-planted, who had infections, who turned out, didn’t have the auditory cortex ability or global developmental ability to even participate in those studies and we’re not seeing those numbers. We’re just looking at the superstars and that’s like reflected in the Facebook viral videos where you see this fabulous kid lighting up and it’s beautiful and fabulous and magnificent and miraculous and for every one video you are seeing, how many, I don’t know, dozens maybe more of people who never even get to that stage of an awareness of sound, discrimination of sound, let alone spoken language ability.”
KS: “Yeah, so there is a study by Niparko et al. He’s a doctor and it was done in 2010 I believe. He’s an otolaryngologist I think. And I think this is the one you are referring to because they tested language abilities in children with cochlear implants and they broke them up by age so they had below 18 months, 18-36 months and then 36 months and above. They tested their expressive and receptive language in spoken English and they graphed it out so you can look at this graph and see that just like you said, there’s a couple of star performers that are right at the normal hearing kids average and then there’s hundreds of kids that are just splayed all over the map, some all the way down to literally a zero on these tests. Okay. So they took this data and they were like ‘what does this mean? This means that we need to implant kids earlier because even before 18 months, it’s not giving them adequate language skills.’ Which is an interesting interpretation because my interpretation is it doesn’t matter how young you implant them, there is still a great chance that a lot of them are not ever going to do as well as their hearing peers on passive language. So instead why don’t we focus on giving them language in another way. You can still implant them, again I’m not into implants, you can implant them as young as you want but do not take away a visual language because as you can see in the variation of that graph, the variation is insane. The vast majority of the kids that they tested did not come anywhere close to performing the same or even on average with a hearing kid in language tests.
When I’m telling people that the current research, and really honestly it’s not even current, it’s research from years ago, that’s been showing that these kids need American Sign Language and a lot of times what they respond is, ‘Well there’s research on the other side too,’ and I’m like no, ‘actually there isn’t though.’ Because any research that you read that shows that sign language is not good for deaf kids or that it shouldn’t be used for deaf kids, there is some huge flaw in that research, you just have to find it. Because that’s not a thing. There is no soundly done research that would ever conclude that sign language should not be used with deaf kids. So either they weren’t using true sign language, they were using like a sign system, or like you said, they weren’t comparing equally to their peers, or the research was funded by A.G. Bell or Cochlear Americas, I mean they have a vested interest in saying that the results, you know, point towards spoken language. There’s so many possibilities of that research not being done well, or they cherry pick their data, just like we were talking about. They cherry pick their stars and they say, ‘see, they don’t need sign language.’ So when people say there’s research to show that, I’m like ‘no, you need to read that research carefully,’ because there is literally no research that was ever done soundly that will show that sign language is not good for deaf kids.”
LS: “So to make a comparison, we hear people that have two languages, two spoken languages, a bilingual home. And then the child maybe has a speech delay and they will get the advice that they should drop one of the languages so it should just be easier to focus on one. What do you think about that?”
KS: “That’s some terrible advice (laughs). So actually there is a lot of good bilingual therapists on Instagram that I interact with often because they focus on bilingualism in two spoken languages whereas I focus on bilingualism with one spoken and one signed, but it’s the same thing. So again there is no research that has ever shown that taking away a language has ever been official in any way, right? Any issue that a kid is having with language development or speech/sound disorder or anything is never because they are learning two languages. Their brain is perfectly capable of handling two languages and I made this analogy on my Instagram a while ago. It would be like saying, ‘I want my child to learn science and math, which one should I choose?’ You don’t need to choose, they can learn science AND math, it’s okay. It’s the same in languages, they can learn three if they want to. That should never be a rationale for taking away a language or limiting exposure.”
LS: “You are just reminding me of some amazing deaf adults that I got to meet. Where as an audiologist if you are not in a deaf education world, you really never have that kind of exposure and unfortunately in graduate school it was not a focus at all either. There’s a whole portion of the population that you are not serving that the audiologist is for people who are hearing impaired and you help them hear better and not at all having to be on a team where deafness is considered. I think that’s pretty backwards. And after I graduated and I got a job at a school for the deaf, it was a lot of re-education in a sense. So some of these fabulous parents and staff at the school, they spoke multiple sign languages so they knew American Sign Language, but they also had friends in the Caribbean and they also spoke a different sing language there, and they would say, ‘Oh, then we went to Germany and spent some time with some people over there and learned a bunch of signing. They probably know more languages than most people who are spoken.”
KS: “Exactly. Exactly.”
LS: “This is why I wanted to talk to you, I just felt like we would agree on everything. (laughing) But really because we have some listeners who are exactly at this juncture or similar. They have a deaf child or a child with hearing aids or they know someone who does in their life and I want there to be more of an awareness of this as an option, as a good option.”
KS: “I’m so grateful that you are doing that. That’s fantastic.”
LS: “Thank you.”
During the break, Kimberly and I were speaking about deafness as a cultural identity. Here’s what she had to say.
KS: “So this is interesting because even when I was at Gallaudet, I didn’t fully understand deafness as a cultural identity. And I’ve heard people make kind of snag remarks, like yeah it’s not a culture, right? But now that I…”
LS: “I just want to put out a disclaimer that we are two hearing people talking about this, which is not ideal but this is a podcast. So, of course I’m just sending people over to you if you actually have the opportunity to read something from a deaf person’s experience, go to that primary person and get their take on it. But as an audiologist and you are a speech language pathologist who have had experience in this field, we can try and discuss this with sensitivity. (laughs)
KS: “So now that I have been working in deaf education for a while, I have come to understand the deaf identity and deaf culture and what I’ve noticed is that kids who are given this opportunity to be part of the culture and part of the community early in their life, they develop better social-emotional skills, they develop a better sense of identity of who they are, they are never ever upset that they are deaf. They love being deaf and I think that’s such an important thing for a young child to be proud of what was given to them and who they are and the only way to do that is to see adults that are just like you. So now that I’ve kind of experienced it and seen how having those deaf models and that deaf culture, that deaf kind of pride, helps develop a child’s identity in social/emotional abilities. It’s so important. So now when I see or hear of a deaf kid that is in the mainstream and has never met another deaf kid, it breaks my heart because I know that that must be a very isolating feeling and must make you feel like something is wrong with you that you are different. And if they only could see that there are so many kids out there that are just like them that might make them feel a little less lonely.”
KS: “Yeah. The one thing I did want to touch on was this idea of putting speech perception and listening skills as a priority over language development. Because this is what essentially is happening in the medical model, is that their number one priority is that a child can hear the Ling Six sounds, don’t even get me started (laughing).”
LS: “I’m interested in your take on that.”
KS: “Oh, okay sure.”
LS: “So let’s tell everybody what they are.”
KS: “Okay so the Ling Six sounds were created by this guy, Dr. Ling. What he did was he looked at the spectrum of speech sounds, so where do all of the sounds of the English language fall on the audio-gram and he picked out six that seemed to kind of span all of the frequencies. What he picked was: “ooo, eeee, ahh, sss, sh, and mmm.” He hypothesized that if a child could hear all of those six sounds then they could hear ideally all of the sounds of the English language because it spans all the frequencies. The truth is that people take this now and they run with it. They take this fact that the child can hear six sounds and they over generalize it to mean that the child has access to spoken language 100% of the time, 100% of the situations. Which is ridiculous when you think about it, because being able to hear six sounds from across the room, is being able to hear six sounds from across the room, like my dog can do that.”
LS: “Even if the child can repeat them…”
LS: “…the sounds are in isolation and they are not found in meaning or context. So maybe you could hear them, but do they mean anything to you? Maybe even you can repeat them, maybe even if a child can repeat them correctly, that still doesn’t mean that they can put them into context or into a word or into meaning.”
KS: “Exactly. And it also doesn’t translate to connected speech in noisy environments and all these other realistic situations where you would be hearing those six sounds, so if you can hear “sh” on its own, fantastic. It doesn’t mean you can hear it now when I’m saying, “Sally sells seashells by the seashore.” That doesn’t translate to hearing from hearing it in isolation to hearing it in connected speech. So yeah, that’s my tangent on the Ling Six that people over generalize it to mean way more than what it actually means.”
“But I think the main issue with the medical model is that their priority is that they want deaf kids to be able to hear, and again that doesn’t mean understand. They just want kids to hear and they want them to be able to perceive speech and they think that those two things will then translate to language skills. Which is not true at all because that’s not what language entails. It’s maybe a small part of spoken language but that’s about it. So my big push for this awareness that we should be focusing on language development and not on speech perception and listening. Because that’s just nice to have but it’s not necessary. It’s not a requirement for language development.
LS: “Yes. I had a speech language pathologist at the school I worked with who gave me this education and spent some time with me. And said, “You know you are the audiologist here, welcome. BUT! Let me tell you how it goes here. Language over speech. And that became the mantra for how…
KS: “no way!”
LS:…these kids and you see these cases, I hear you, I see what you’re saying. This is not school where everything was the highlighted superstar cases in research. This is a problem when there is no access to language and we are focusing only on spoken speech and sometimes the parents come in with such unrealistic expectation on what they can accomplish.”
KS: “And who do you think gave them those unrealistic expectations?”
LS: “Do you want me to cover my eyes- it wasn’t me!”
KS: But it’s true because there are certain kind of cognitive biases that we have. You tend to cling to that first piece of information that you were ever given about something and you hold that as true no matter how many more bits of information you get that contradicts the original piece of information- you still hold on to it. And so this is what you see with deaf kids parents. That very first otolaryngologist or whoever it was that told them ‘your kid is going to talk and it’s going to be fine,’ they cling to that like a buoy and so then as the years go on and they see that their child is not succeeding with spoken language and that they really do need sign language, they can’t accept it because they are so stuck on that very first piece of information.”
LS: In an earlier episode, I talked about the newborn hearing screening. I did give a lot of reasons of why a baby who does hear, would not pass. Like maybe there is a false positive, where the equipment wasn’t working or there was fluid in the ears. And sometimes people who are giving that reassurance to the parents, they are saying nothing is wrong, it’s going to be fine. And no one ever actually, even at that point, where you have- even if it’s a false positive- so let’s say that they didn’t pass because they are deaf, then that’s an option! And maybe someone needs to actually say that and say we don’t know what’s happening here. It may be that this is a false positive. Or maybe they are deaf and if that’s the case, even just to put that somewhere in that parent’s mind, even though they are totally overwhelmed with the new baby and all that, just to say it’s not a tragedy if this happens. The way that I think the world really looks at it and unfortunately what happens is that becomes perpetuated by people who then look at their own deaf children as something that they need to fix and hide and be ashamed of.”
KS: “Exactly. So that’s another big thing that I preach on social media, is that we shouldn’t be telling parents that their kids are deaf in this dramatically sad way. Your poor child has this death sentence now because they are deaf. We should be telling them like the same way we would be like, he has blue eyes instead of brown eyes, oh what a coincidence. Like, he happens to be deaf but here are all the things that you can do to make sure that he a has a perfectly normal and successful life. Because I know plenty of deaf people that are, again, more successful than I am, more literate than I am, more fluent in English than I am. And are living perfectly, and even the ones that aren’t, don’t have PHDs or advanced degrees, they can still have perfectly successful lives. So I think that initial diagnosis, the way that you tell the parents can really influence, like oh my gosh, my child is going to struggle for their whole life. or okay this isn’t that bad, we can get through this, we just need to do the right things and get the right resources.”
LS: “Yeah, it’s definitely a challenging and different journey than people would have imagined. Especially that most deaf children are born to hearing parents so this is a new and different and education has to go on. Which is what you and I are doing on the internet. “
KS: “Yeah, exactly.”
LS: “There’s so much complexity to this. Like CODAs or ‘children of deaf adults’ and they hear and they speak. They grow up with parents who don’t speak the same as they do. It goes a bunch of different ways. Once you are aware of it and look into how varied the world is.
“Like another one from a family member who heard that I was at a deaf school, they were like oh it must be so quiet. The lunch room is so quiet. I was like, no that’s such a weird thing to think. But also I can understand where it comes from if you never interacted with deaf people. Deaf is not yes hearing or no hearing at all. There are different levels,- moderately severe, severe, profound,- people have some hearing or they have some awareness of sound and deafness is more of an identity. I saw that more and more and let me tell you, the lunch room was very loud filled with 45 children, even if most of them were not necessarily using their voices for speaking, some of them.”
KS: “I’ve heard that a lot. I’ve gotten that a lot. Oh it must be so quiet, what? no. it’s not. To go on your last point, though, I forget where I’ve heard this but definitely in grad school I remember hearing that, deafness is the only “disability” where a deaf parent would be glad that their kid is deaf. So, how can you call it a disability if a parent is glad that their child has this whatever it is, then it’s not disabling, because why would a parent be glad about a disability. It’s very interesting, interesting perspective.”
LS: “I had a person say to me, well if deaf people are so proud of their identity and don’t want it to be a disability, why are they collecting money from the government and why are they…They can’t have it both ways?”
KS: “Yeah (speechless) uh, ya. This is a very good point”
LS: “Kimberly is rolling her eyes- for our listeners there.”
KS: “Yeah well because, I kind of get it, you know. On one hand they do want to be considered normal and not disabled, which you know for the most part they are, but on the other hand they want to collect disability, I can kind of understand why someone would get up in arms about that, I don’t have a good answer though.
LS: “Well the way I see it is that even if someone lives in an enlightened perspective that their deafness is not interfering with their life, the reality of the situation in their day-to-day is that it is. Maybe they would like the world to see them the way they see themselves but as it stands they do NOT have access to an interpreter for every event that they go to or every DMV office or everything that they need to do- at the doctor’s office,- so they are at a disability, a disadvantage, as the world currently is.”
KS:”That’s a really good point because if you think about disability, it depends on your definition of disability. But if you think of it as not being able to complete your every day tasks because of the situation that you’re in or the society that you live in, then you could understand why someone might say like a short person playing basketball has a disability. Because in the context of basketball, they are disabled because they can’t reach the hoop. But in the context of every day life, they are not disabled. So a deaf person in the context of Gallaudet University is not disabled, because everywhere they, go all their classes, everyone they talk to, everything is in sign language. But in the context of the greater world they are disabled because the greater world does not accommodate for them at all.”
LS: “Yeah, I think that’s the experience that me and my parents were having on that tour for the first time, was I don’t know how to follow along to this person and I require an interpreter which is very unusual. Someone with that kind of privilege that they are not looking at.”
LS: “Well on that note, I think that we really discussed a lot of important topics and I’d like for any listeners to be able to come and see some more of your resources and research over at languagefirstlab.com
LS: “and go to languagefirstlab on Instagram and Facebook.”
KS: “Awesome. Thank you so much.”
Thank you again so much to Kimberly Sanzo. What an interesting conversation we had, at least I think so. I hope that what you take away from our conversation is just how much we care and how much there are professionals out there who want the best for your child, want the best for their language development, for their social development, for their educational development and if you ever feel that someone is pushing you or making you feel guilty or pushing you towards doing something and using, kind of, scare tactics that you could really pause and consider what information you are getting, what’s the bias of the person giving it to you and see if there are other options out there for you.
Thank you for listening to the end, it was a long interview but I really didn’t want to cut out any of the information we talked about and I hope that, if nothing else, you have a little bit more of an appreciation for the deaf experience and some more knowledge about sign language. Definitely check out Kimberly’s accounts, the Language First Lab on Instagram and on Facebook and as always I really want to know what you think. So send in your voice memos, send in your comments @AllAboutAudiology podcast on Instagram and All About Audiology podcast on Facebook group and I can’t wait to hear what your thoughts are on this topic and your experiences with sign language and language development in general.
Tune in next time for an in depth conversation about cochlear implants and we are going to be talking a little bit more about the experience of the cochlear implant as well as the process of evaluations that need to go on in order to evaluate candidacy. So that episode is coming for you, all about cochlear implants.