"The Butterfly Cage": an interview with author Rachel Zemach

It's a pleasure to welcome Rachel Zemach to The Art of Medicine with Dr. Andrew Wilner.

Rachel is the author of the new book, “The Butterfly Cage, joy, heartache, and corruption: Teaching while Deaf in a California public school.”

Rachel was born hearing impaired in one ear but learned to speak. However, at age 10 she had an accident that suddenly rendered her deaf. She wore a hearing aid, learned sign language, and has become an advocate for the Deaf community. 

Rachel has come to know the Deaf community and is a strong advocate for American Sign Language. She has reservations about the value of cochlear implants for children. In her experience, American Sign Language is a more powerful communication method than spoken words for a deaf child.

I was able to interview Rachel via Zoom as she was able to follow the closed captions of my questions! We also discuss whether there is still a stigma to being deaf.

Please watch our 30-minute discussion. For those who can’t hear, closed captions are available.

You can find "The Butterfly Cage" on Amazon and in my library.

You can learn more about Rachel Zemach here: https://www.rachelzemach.com/

Thanks for listening!

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Transcript

Welcome to the Art of Medicine, the program that explores the arts, business, and clinical aspects of the practice of medicine. I'm your host, Dr Andrew Wilner. Today, I'd like to welcome Rachel Zemack. Rachel is the author of the recently published memoir, "The Butterfly Cage." The subtitle caught my interest, "Joy, heartache, and corruption: teaching while deaf in a California Public School." But before we get started, I'd like to thank our sponsor, locomstory.com. Maybe you're curious about locums and how it might fit into your career story, but do you know all the different reasons physicians choose locums and how it works for them? At locumstory.com, you can hear first-hand stories as diverse as physicians themselves. There's not one solution for everyone. The variety of opportunities may surprise you. Locum story is an unbiased educational resource. It has tools that let you explore trends in your specialty and compare different locums agencies. There's even a simple quiz to see if locums is right for you. Do your own research at locomstory.com. And now to my guest. Welcome Rachel Zemack!

Nice to be here. Rachel, thanks for joining me. Before we get into your book I want you to tell us a little bit about yourself and how you became acquainted and immersed in the deaf community.

I was born hearing, and I became deaf when I was 10 years old rather suddenly. I was tested at school in a school-wide hearing test, and they found that I was deaf in one ear, and two weeks later I had an accident that knocked out all my hearing in the other ear so it was very sudden deafness , and because I was 10 years old I had already learned to talk, of course, and

began wearing a hearing aid and maintained my speech even though I'm very deaf physically, and from there when I was 14, I went to a school for the deaf for just one year, but there I learned ASL and that's American Sign Language and

became very enamored of the community and the culture, so even though I led a lot of my life after that in the hearing world, I never lost my affection and interest in the deaf world, and years later I got a job teaching at a school, at a regular public school but teaching a deaf class and there I really went through a transformation of my own identity

and that's what I wrote the book about. Okay, so were these children that were deaf the ones you were teaching? Yes, deaf and hard of hearing. Well I guess I'll ask the obvious question, you know, you're up in front of the class, how do you communicate? Sign language! ASL, American Sign Language

um, it's a very powerful language. It is very comprehensive, and if anything if you do a real analysis of it you'll see that you're able to transmit more information on a topic through signing than through speaking, a lot, more. That's very interesting because I don't know much about sign language and I've always assumed that it was sort of abbreviated, you know, that it would be easier to articulate in words you know than with fingers and gestures, but but maybe the the opposite is true? The the exact opposite I I don't blame you for thinking that because I know nothing about blind people and their ways of communicating. I know nothing about Braille and other forms of tactile communication, so I'm not surprised that hearing people know nothing about sign language very often, but the truth is that there are different kinds of sign languages

throughout the world every country has their own sign language and within this country ASL American sign language is

in my experience an incredibly important

to all uh let me take the word tool back, an incredibly important vehicle for accessing the brain directly, the brain of a deaf child, my brain as well, when I'm around deaf people there's a level of communication that I don't have around hearing people when I'm around hearing people there's stress, there's work, there's nervousness about lip reading them, about captions, which I'm using right now captions and which often make mistakes, yes they do, yeah there there's a level of stress where that I don't have when I'm around deaf people and likewise deaf children when they're getting educated from a teacher who is themselves deaf and fluent in ASL, the message that the teacher is giving goes directly to the child it's not indirect like it would be through an interpreter being filtered through a whole other human being's brain and language, but it and it's not lip reading and Stress and Anxiety of trying to catch information in a mode that is not designed for you the way it would be among hearing people but rather it's a simple straight line from one mind to another and it's incredible how effective it is. Well I can see that you know I mean it's not a perfect parallel but people who speak multiple languages are always more comfortable speaking the language that they were born into whereas the second language or the third language it's learned so they have to think about it, they have to translate back but you know when you see people who are fluent in many languages and then they meet someone else from their own country or their own location and they speak in their own native language uh you could see that any tension evaporates that it's much easier for them to uh communicate so I and I think for a deaf person to learn to speak has to be much harder you know than if they learn sign language and I I wonder also you know there are there are cultures that, I'm gonna wave around you a little bit here, you know that speak with their hands, and of course if you're a dramatist or you're an actor you know use your body to to communicate to facilitate to enhance your words and sign language is is physical right you're moving your hands your body isn't that correct?

Sign language is very physical. The face is part of the language tiny morphisms that are made by the mouth and by the eyes the eyebrows the positioning of one's shoulder those are all part of the language of an official part of the language in other words students who are in sign language classes, ASL classes, will be taught when to raise their eyebrows when to lower them, when to turn their shoulders when they're describing a dialogue, they turn their shoulders for each person who is speaking at a time there's a lot of physicality, but there's also a lot of nuance and I'll give you one example of the nuance and how layered multi-layered ASL is as compared to English, so in English we have words that have multiple meaning, yes, and they're very important for children to understand, but hearing children pick them up automatically they just hear the different meanings of the word for example, "get," I'm getting sick or what time I'm getting home, or I will get some milk at the store, they're all different meanings of the same word "get." And for deaf children, they don't hear this kind of casual use of the word "get" being different depending on the context, so if they're going to be reading English, they need to be taught very explicitly that the word "get" has three different meanings. 

And the method that I use to teach reading to deaf children

found that the word "make" m-a-k-e make has 11 different meanings, you can make money, you can make a cake, you can make yourself sick, by eating too much of the cake, you can

make a friend, they're all different kinds of make, and each person has a different sign, ah, totally different signs, the signs have nothing in common with the word "make" the signs are dependent on the meaning of the word, more contextual, okay now how hard would it be, I'm not particularly gifted in foreign languages, I stumble through a couple of them, if I decided tomorrow that I wanted to learn sign language because it sounds like it it could be fun and it could be useful? How hard would it be could I learn in a week, month, year, your average person?

Okay that's a great question.

You know, it depends children learn really really fast. Babies before they can talk, can learn sign language. Tehy give you an idea of how fast, and it also gives you an idea of

sign language being located in a different part of the brain than spoken English so babies, hearing babies, they can't use their vocal cords until a certain age, but before that age they can use sign language, so baby sign language is something that's very popular because it's enabling hearing children to communicate meaningfully in language, real language, not just by crying or gesturing or demanding something but with real language before they're able to speak. Elementary school children especially before the age of five, can learn language incredibly easily and as they get older it gets harder, it does get harder for us to master a new language with age but what really matters is your motivation. Are you doing it just because it seems fun and easy, are you doing it because you are interested in dating a deaf person and they refuse to date you unless you're fluent in an ASL, that might give you a very good motivation, are you learning because you're boss at work is deaf, and the only way you can communicate with her or him is ASL, you know ,what's the motivation? I can imagine uh parents who have a child who's born deaf, all of a sudden they need to learn ASL so they can teach their child and they can all communicate is is does that happen? Okay so, I'm really glad you brought that up because first of all it's not their fault,

however,

85 approximately 85 percent of our parents parents of deaf children do not learn sign language, hmm, or they pick up a few signs and they make up the rest, it's called home-made sign language and it works when the child is little

when the kid is little the parent thinks that by gestering they're communicating and it's good enough and it's nobody's fault

however I'd correct myself there, where I would put the blame for this is on the specialist who the parents encounter, in other words, now newborn babies are tested for hearing, their hearing is tested in the hospital at birth, sometimes two months later, but very very small babies, nationwide are tested to see if they have any hearing issues,

many of them do, and they're discovered early and they're sent immediately to an audiologist. The audiologist

or the doctor the pediatrician the

even the educational staff will present the hearing issues as the negative, a tragedy, I'm so sorry your child is deaf. 

The parents are in shock, and they feel that their child is not what they expected, and life with their child will not be how they imagined it, and to reassure them the medical professional immediately tells them, don't worry there's the miracle cure, it's called cochlear implant, we can give your child a cochlear implant, and they will be as good as normal quote unquote Normal, they'll be able to hear, you can put them in a regular school, they'll be able to lip read you can give them speech therapy they'll learn to talk,

they can live a normal life, they can go to a regular school I have a neighbor who did it, he's done it and he's going to a regular school and he's doing great. So this is the image the innocent parents are given, and of course, it sounds very attractive, it sounds like oh thank goodness my child won't be limited to a small deaf life, however, what the doctors are not saying is that it only works for some people, most deaf people do not learn to talk, many who do learn to talk, choose not to,, many who get implanted with Cochlear implants, 47% to be exact of deaf people in this country who were implanted choose not to wear the implant so there's a whole other side to the truth and education in regular schools often fails. I mean very often 65-75 percent of the time fail, and so you have a generation of deaf and hard and hard of hearing children who were bursting with potential when they were little and when they're in their early 20s

they no longer have that potential for thinking, for language abilities, for employment, or for education, and it wasn't there deafiness that limited them, it was the educational and even the medical system.

And that's why I wrote my book, ah thank you, because I think you would agree that if this technology worked 100 percent uh then there it would still be nice to communicate with other people with uh sign language but the problem with sign language is the other person has to know it and if you're in the playground you know all the other kids don't know sign language so if your implant worked 100% and you learned language perfectly and you were just like every other kid may maybe it wouldn't be a problem but if the technology doesn't really work you know the way it's billed then you're kind of uh neither here nor there, you haven't learned sign language so it's hard for you to integrate into the Deaf community, and you haven't learned to speak well because you can't really hear properly and now you're kind of stuck, is that kind of a summary of what you're saying? You know that's an excellent summary that's actually an an excellent summary of the situation of the majority of deaf and hard of hearing children in this country, they're stuck in the middle, and they're stuck in the middle because of this misconception of Cochlear implants, speech therapy, mainstream education, in regular Public Schools, regular hearing classes and hearing aids, amplification, being a cure-all, whereas the reality is lip-reading is extraordinarily difficult, all machines are flawed and faulty, you could have a battery that failed and all of a sudden you can't take your spelling test because you're hearing aid battery suddenly went down on you, it's a machine, it's not real language, and it doesn't get received by the brain the same way actual direct language does, it's flawed it's full of holes, and, but because of this mindset of the upper cheering person, which is that speaking and hearing more and looking normal is better

deaf children are steered in that direction and not taught sign language. It doesn't sound to me like it would be a big burden to add sign language to the other program, in other words uh well let's see if we can learn to talk and and hear with all the gadgets we've got but in the meantime let's learn sign language too you know why why not because as you say when young children up to age of five they're very uh they're sponges right they they learn and uh if you teach them they they learn and maybe their parents ought to be encouraged also do you think is there a stigma to being deaf is that one of the reasons why sign language is not pushed because then obviously you're deaf you know if I'm talking with my hands here in the corner with my buddy everybody knows I'm deaf uh is that a bad thing do you think that still exists that there's a stigma to being deaf? You know it's funny the the time in history that we're living in right now is a strange one because it's almost schizophrenic in terms of its approach towards deafness, for example think about the movie Coda, there's a movie C-o-d-a, and it won best picture at the Oscar awards last year and the cast of Coda is almost all deaf and culturally deaf, and the theme of the movie is very Deaf, It's a fantastic movie,I strongly recommend it and

it it won not only an oscar but at it one very very broadly throughout the whole Awards season it was winning one award after another after another after another last year and Marley Matlin was in a Troy Cutler Daniel Durant

they're fantastic, and they're proudly Deaf, and so last year the academy academy award saw the best and most famous actors and actresses in the world, in this country, standing up and signing and hand waving in ASL, there and also signing, thank you, and I love you and nice to meet you you know they were learning a little bit of sign language they were excited for Coda to have won and all of a sudden the whole hearing world was excited about deaf people and Deaf culture and ASL and when I went out in the world right after the Oscar awards last year, strangers everywhere were signing to me, oh you're really deaf,, oh thank you nice to meet you hi my name is everywhere I went there was a positive attitude when they found out I was deaf they associated it all of a sudden with glamor and Hollywood so

and hearing people are learning ASL at a rate of 700% more over the last 10 years than they used to, they are thronging to ASL classes in high school and in colleges, it it is the third most popular language and most used language in the country and in college I've heard they choose ASL over Spanish Italian French, Etc, admittedly they do it because they think it's easier, which it isn't really, it's a language, and it takes work, but there's a strange schizophrenia and how hearing people see deafness, on the one hand they glamorize it, and they love ASL, and they want to learn ASL, everywhere I go hearing people tell me oh I've always wanted to learn it, I learned a little bit when I was in elementary school, I've never forgotten it. They're excited about it, they love it they feel something for it on the other hand when you actually have a deaf child or a deaf adult like me who comes into a situation and says okay look I'm deaf I need a sign language interpreter

or I might say, I'm deaf, I'm not ashamed of it I just want to let you all know I'm deaf,

there are many situations like this where people are surprised, wait a minute, why does she sound proud of being deaf, or if it's a child

wait a minute we want that child to not call themselves deaf, we want them to call them the "hard of hearing" we don't or we want them to hide that part of themselves and they don't see the benefit to being culturally proud or ASL fluent or connected to the larger Deaf world, they see the negative, so there are these two things going on simultaneously and our country. Rachel this is fascinating and we're just about out of time so I want you to tell us where we can find your book which I presume goes deeper into these issues is that correct, it does, it goes much deeper into these exact issues, and it does so by telling stories so it's entertaining and it's also true and it's on Amazon right it's on Amazon yeah and the publisher is called the Paper Angel or Unruly Voices that the imprint and it's called "The Butterfly Cage" and it just came out about a week ago, well congratulations congratulations and I'm going to put a link to it in on my website andrewwilner.com I have a library section and I'm going to add "The Butterfly Cage" uh to that section of course you can go directly to Amazon too well I'd like to thank my guest Rachel Zemack for a great discussion I learned a lot, I think this is a whole uh sort of a whole area of inclusivity um that we're all working on and a lot a lot to learn about deafness. Rachel thanks for being on the Art of Medicine thank you so much it's my honor. Before we close I'd like to give another thanks to our sponsor locumstory.com, a resource where providers can get real unbiased answers about Locum Tenens, I'm Dr Andrew Wilner see you next time.

This program is hosted, edited, and produced by Andrew Wilner MD, FACP, FAAN. Guests receive no financial compensation for their appearance on the Art of Medicine. Andrew Wilner, MD, is associate professor of neurology at the University of Tennessee Health Science Center, Memphis, Tennessee. Views, thoughts, and opinions expressed on this program belong solely to Dr. Wilner and his guests and not necessarily to their employers, organizations, or other group or individual. While this program intends to be informative, it is meant for entertainment purposes only. The Art of Medicine does not offer professional financial, legal, or medical advice. Dr Wilner and his guests assume no responsibility or liability for any damages, financial or otherwise, that arise in connection with consuming this program's content. Thanks for watching!  For more episodes of The Art of Medicine, please subscribe www.andrewwilner.com.