What It's Like To...

What It's Like To Be Deaf and Advocate for the Deaf Community

• Rachel Zemach • Season 6 • Episode 7

Share episode

Send us a text

At age 10, Rachel Zemach lost her her hearing in an accident.  That obviously changed her life--but, she says, becoming deaf was one of her life's greatest gifts.  In this episode, Rachel shares her experiences going through the world with and without hearing, and offers advice on how hearing people can help and advocate for deaf people (including words and actions both to use and to avoid--hint: don't assume all deaf people can lip read!).  Rachel also offers her opinions about cochlear implants; teaching deaf kids and their parents American Sign Language; the strength and humor of the deaf community; and much more.  She spent many years as a teacher of deaf children, and recently wrote a book, "The Butterfly Cage," chronicling her experiences and observations.   

In this episode:

03:37--Describing coming home from the hospital at age 10 and realizing things were different
05:13--How and why Rachel's love and language stayed strong
07:21--Some of the "great gifts" she has experienced being part of the deaf community
10:49--Frustrations and challenges Rachel faces
14:31--Cochlear implants: what they are, how Rachel feels about them, and the benefits of learning ASL
20:47--Why many doctors tell parents of deaf children not to learn ASL, and the harm that causes
26:01--Rachel's thoughts on the state of advocacy for deaf people
30:26-Rachel's advice to parents of deaf children
31:25--The experience of writing a book about her years teaching deaf children
33:42--Tips on things hearing people should (and should not) do and say to deaf people

Want to know more about Rachel?


Want to know more about "What It's Like To..."?

  • Sign up to be on our Insiders' List to receive our newsletters and insiders' information! Go to whatitsliketo.net (sign-ups are at the bottom of the page)
  • Follow us on social media:

Support the show

Rachel Zemach:

it happened to me, being at the dinner table with my family. And they're all talking, and I knew that the conversation was rich and wonderful and very important to me. It's who I am. That's my family. So that's my culture, my personal culture, my world. And yet, I couldn't understand a word of it. this is the experience of all Deaf people,

Hello, and welcome to what it's like to the podcast that lets you walk in someone else's shoes and live vicariously through their unique experiences. I'm your host, former journalist Elizabeth Pearson Garr, each episode, I'll be asking a new interviewee, all the what, why, when, and wheres of how they do what they do. Before we get into today's episode, I wanna tell you about another podcast you might enjoy. Chris Bagg and Jesse Dukes host Upper Middlebrow, a read along podcast about books and sometimes other culture. Both hosts are writers and enjoy deep curious dives of the books they read and discuss. The episodes are lighthearted and fun, sometimes a bit rambly, but by asking questions of each other and occasionally debating, they often arrive at a heightened understanding of the craft of storytelling. Their podcast has different topics from mine, but what we share is a deep curiosity and a joy in exploration. If you liked my conversations with the actor, Barrett Swatek, or the artist Nina Katchadourian, or the musician, Brett Anderson, you'll particularly appreciate Upper Middle Brow. Their current season kicked off with a series about foodie films, including Babette's Feast, Big Night and Tampopo that get you excited to cook a new recipe and watch a food movie. You can find them@uppermiddlebrow.com or wherever you find podcasts. Alright, now on to today's episode.

Elizabeth:

I'd like to tell you a story. Several years ago, a 10 year old girl named Rachel got into an accident. It wasn't a tragic accident, or as she remembers it, particularly unpleasant, but it did result in Rachel losing her hearing. It did not, however, impact her love of language and literature. Rachel Zemach grew up to become a teacher of deaf children, an advocate for the deaf community, and a published author. Her book, The Butterfly Cage, is a memoir about her teaching career. She says parents are taking risks not learning American Sign Language. We'll get into all of that and more because Rachel is here on my podcast. Rachel, welcome. I'm so glad to have you here.

Rachel Zemach:

Likewise, I'm glad to be here. Thank you.

Elizabeth:

I should explain a little about how we're conducting this interview. Some people may think that deaf folks don't have speech, but because you had hearing until the age of 10, you do have speech. And you're understanding me because we're using a closed captioning system. Is that right?

Rachel Zemach:

Correct. I'm using my phone for captioning and I'm relying on it a hundred percent. So I'm looking back and forth from my phone to the screen, but it's working very well so far.

Elizabeth:

Great. Well, this is really wonderful for me to have you here. Thank you. I'm wondering if you can explain for me a little, because you had 10 years as a hearing child, and then you've spent the rest of your life as a deaf person, if you can explain what it's like to go through the world both ways, as a hearing person and as a deaf person.

Rachel Zemach:

I don't remember that much about being hearing because I was 10 when I became deaf, so very quickly it became a big part of who I am. Even within months after I became deaf, I had no interest in getting a cochlear implant, for example. I was very clear that I'm deaf and this is who I am I think a lot of things about me are very different because I was hearing for 10 years. For example, my speech and my knowledge of English came to me very easily. Effortlessly, because I had normal hearing for 10 years, or almost normal hearing. When I got home from the hospital, and suddenly I was deaf in the year following that, I remember being at my family's dinner table and not being able to understand them. And also coming home from the hospital and trying out a little piano that we had called a clavichord. And I used to play that and I came home from the hospital and tried it out and couldn't hear it at all. So I remember, the realization, okay, life has changed. And there were moments that it was difficult, especially not understanding my family.

Elizabeth:

at young teenager, after your accident and realizing you were feeling a bit alienated from your family and the conversations. You didn't lose your love of language and of learning. How did you keep that up? Did you turn to books a lot and you just kept writing?

Rachel Zemach:

I think it was just too strong in me to kill, We were raised on a lot of literature. And a lot of storytelling, and humor, and books. Literature was a big part of our life. My parents made children's books for a living. So, our life was storytelling, and imagination and discussing whatever book they were in the middle of at that time. I'm sure a lot of it had to do with my father also and his love of language. And when I became deaf, I started wearing a hearing aid. So with the hearing aid with learning sign language when I was 14 I kept up language skills and then fell in love with sign language. It's an amazing language. It's unlike any other. Very enchanting and very funny.

Elizabeth:

Did your family learn ASL as well, or were you the only one who learned it?

Rachel Zemach:

They didn't. My mother tried and she felt guilty about not learning. And a few times she asked me, you should I learn? I'm so sorry. But when she tried she couldn't quite do it. There was something about her brain that was really struggling to learn signs. And I told her, don't worry about it. I can understand you one on one. If I could go back in time, I would maybe do things differently. With my husband for sure, if I could go back in time, I would have insisted that he become fluent before we go any further. So, there are things you don't know because of the stage you are at in your development, your own identity. And as a child, I was way not there yet. I guess when you are born into a hearing family and you have 10 years of hearing them, ask them to change that drastically is a big thing.

Elizabeth:

I think we all have things we could look back in our teenage years or at any point in our life and think, oh, hindsight, I would have done that differently. So you are not alone in that feeling.

Rachel Zemach:

Yeah.

Elizabeth:

You have said that becoming deaf gave you some of your life's greatest gifts. I'm wondering if you can talk more about that.

Rachel Zemach:

The community, the support, the camaraderie, the knowledge they have, the humor, the solutions, the coping skills, the politics, the passion, they're exceptional. An example is I was in the hospital and they were trying to get me to use a remote interpreter in the hospital and It wasn't working, I was about to have brain surgery, the next morning, and we were meeting with my surgeon, he was there, and they brought the computer with the remote interpreter, but they had forgot to charge it up, and so the screen was black, and I was left out of this conversation about my brain surgery the next morning. And. I had my phone with me, and I was very frustrated. I posted, on Facebook, where I have many deaf friends, and I told them what was going on, and within a few minutes I had tons of answers, and they were telling me this is wrong, it's illegal, you have the right to refuse VRI and demand in person interpreters. This is how you do it. This is the paper that you show them. I can come and tell them in person if you want. This was from a woman I barely knew.

Elizabeth:

wow.

Rachel Zemach:

I can call the hospital and I'll explain it to them, instantly if you want and I felt so lucky that I had this community. They understood how I felt and nobody else did, not even my family. My husband didn't understand, my daughters didn't completely understand. The doctors had never experienced it. They're all good people, but they had no clue how it feels or what my legal rights were. And the deaf community had it right at their fingertips. And they're funny. There's a lot of humor in the deaf world. I guess an oppressed group comes up with humor to survive. And the deaf historically have been very oppressed. Things have gotten better. The shocking thing is how little they've gotten better. In the real world, in schools, in medical settings, any time we want access to an event, maybe we wish we could go see a play or an event at a library. Or we want to put our deaf child in a after school art program. Or we want to know what our surgeon is saying the night before we have brain surgery. In all of those settings, we have to fight for access. And in all of those settings, when we say what we want, we'll be told no. Sorry, we don't provide that. Even though legally, we have the right to get it. It's a fight. So, it's hard.

Elizabeth:

Yeah. That sounds like an incredible group of people who will confront the fights with support and humor and love.

Rachel Zemach:

And they'll galvanize. Like, if a deaf school is being threatened with shutdown, which all over the country, deaf clubs have shut down, and deaf schools are closing. And, the deaf community will rally and fight to keep it open.

Elizabeth:

Are there certain things that you miss being able to do that you were able to do as a kid? I mean, you mentioned playing the piano. Or do you feel like the opportunities, the gifts that you've been given, from being deaf, you lean into the positive things and don't think about the things that you're not able to do now.

Rachel Zemach:

Yeah, once in a blue moon, I'll have a moment of thinking, wow, this is hard. I get frustrated with hearing people usually, with communication, with hearing people. Part of the problem is that I'm often using my voice in public and hearing people are therefore talking back to me. And that doesn't work.

Elizabeth:

Right.

Rachel Zemach:

that's on me. I could easily just not use my voice. And they would respond a lot better. Again, it's ironic. Sometimes I wish I could hear the words to songs. Or, I wish I could hear TV. For example, I like British accents, and if I'm watching a British TV show, when I turn the sound really loud, and I have my hearing aid on, I still don't really catch the difference between the voices and the background noise or the music that they play, and it's frustrating. And for sure, when I'm around hearing people in a social setting, It's brutal, My husband and I met new friends recently, and I like them very much, however they're hearing. And they want to get together as a foursome, and my husband doesn't sign very well. So, I've tried it a few times, and I use this. app on my phone. But it picks up all the voices at the same time, and the voices of other people around us. And, it's extremely exhausting, and demoralizing, and almost always leaves me with the sense that this was not worth it. Let me hang out with deaf people, and that's it. This is too hard. So that's the honest answer. Although, most of the time, when I do hang out with deaf people, I feel so lucky that I'm just constantly grateful that I learned sign language when I was 14. And I happened into that world. And so my mission in life right now, if I were to write another book, would be to write a book for all those people who don't have normal hearing, however, they don't have connections to the Deaf world. I would try to get them closer to having all of those positive things in their life.

Elizabeth:

Is it exhausting for you to have a conversation like this?

Rachel Zemach:

Like, this is not too bad because I have captions. During the pandemic, I joined a writing group when a deaf friend of mine mentioned this kind of captions. I'd never heard of it. And she told me how to do it. And thanks to that kind of technology, I started attending a writing group that's wonderful people, sweet, supportive, kind, hearing people who really helped me get my book done. Show me that I was on the right track. However, when the pandemic started changing, and people were meeting in person, the group was all excited because they could meet in person. And I told them, look, I'm gonna be out. When that happens, it's over for me. I won't be able to attend anymore. And they have gatherings um, That I, can't go on, dinners and hikes If I went, it would be incredibly frustrating. I had them all over to my house, but I got an interpreter. it's exhausting when you don't have access, when you don't have captions, or when the captions aren't working, or when you don't have an interpreter, then it's really exhausting. But when you do, it can be wonderful. It's not the same as direct communication. That's what you get when you're around deaf people.

Elizabeth:

The conversation flows in a different way. Can you explain, for those who may not know, a cochlear implant? What that is and perhaps why you didn't get it.

Rachel Zemach:

It's surgery that is done in the cochlea of deaf people, and it's frequently recommended by the majority of doctors and audiologists in a very aggressive way these days. So the medical view of it, is that it's a miracle, it's a must, it's a clear solution to being deaf or even hard of hearing, and that it would be ridiculous not to get one. Many deaf people I know have them and don't use them. In fact, 47% of all people in the U. S. who were implanted as children don't use them as adults. And among my friends, I do have some friends who use them and like them, but I also have many who wish they didn't have it, who have medical problems from them, who very much dislike having it forced on them by doctors and disagree with how frequently they're recommended.

Elizabeth:

Can you go into some of the issues? I, thought it was interesting when I was doing some research prior to interviewing you. It's not just a potential medical problem one may have, but a whole bunch of other issues that might result. Can you explain some of those?

Rachel Zemach:

Yes, and I'm really glad you asked this, the number one issue is language deprivation. Ironically, cochlear implants contribute to that rather than solving it. And this is the thing that most parents don't understand until it's too late until they've learned the hard way by experience and experience that they cannot really reverse because the damage is already done to their children. So the basic issue is that we learn language from birth to five years old, especially well. Our brains are suited for learning a language. And it doesn't matter what language it is. Sign language is a language and it's totally on a par with other languages. When it's given to a baby, American Sign Language, of course, other countries have their own sign languages, and it's true of them, too. But the reason I emphasize American Sign Language is that sea signs is something that's used with many deaf children, and it's not a language. So, I'm referring only to ASL, a real language. When it's given to babies, babies are exposed constantly ASL, American Sign Language, they start picking up all the benefits to humans that language has. And so their brains become very strong, very capable, very ready for education, ready for learning, language, for everything. Whereas, if you don't give a deaf child sign language until later in life, it could be the age of six when they finally go to school and maybe they have sign language from their teachers. It could be later when they go to a deaf program when their other programs are not working. Finally the parent puts them in a deaf program. But any time after the age of five, if they have not had a solid, comprehensive, real language fed to their brain on a regular basis, they're at a huge disadvantage. And we call it Language Deprivation Syndrome. And 70 percent of all deaf and hard of hearing children have it. It's extreme and the impact it has on people throughout their lives is extreme as well. When I was a teacher, maybe 98 percent of my students were extremely language deprived. There were only one or two students who already had a language that was spoken English because they had some hearing and their parents spoke a lot to them. But educational aspect is debilitated by the fact that you have no language to teach the kids with. First you have to teach them language before you can actually teach them. I want to drive home the connection between language acquisition or deprivation and cochlear implants. So what happens is a baby will be identified as being deaf or as severely hearing impaired, as the doctors call it. And the parents are told, don't worry, just get your kid a cochlear implant, or two cochlear implants, one on each side, immediately. ASAP. It could be two months old, and it has this very serious surgery done on its head. Where it's quite invasive. But the doctors say get it as early as possible. And of course parents do it. They have no idea why they shouldn't. All they know is that every single doctor they go to tells them get a cochlear implant quickly. It'll solve your problems. So they do. The trouble is that the doctors also say, don't learn sign language. And that's where the problem lies.

Elizabeth:

Why would they say that? Why would the doctor say don't learn ASL? Because what I've read is how useful that would be. In fact, you advocate if everyone could start learning ASL, all kids in school could learn it, how many problems could be solved. So why would doctors say to the parents of deaf or severely hearing impaired, don't learn it? What would be the harm? Even I tried to learn some, my children had full hearing, but just babies pick up on sign language before they pick up on, verbal cues. They can express themselves that way also. So that seems really contrary. Yeah.

Rachel Zemach:

Right, the benefits of ASL are extraordinary, however, what the doctors say is that if you learn sign language and if you expose your kid to sign language, they won't be motivated to use their ears. Or their speech. So the doctors pose it as an either or thing for the parents. You have to choose one or the other. Do you want your child to be in the deaf world, and live in the deaf world, and be segregated in a deaf community? Or do you want them to live in the hearing world? And of course, any parent would say, well, the hearing world sounds better. The trouble is that what the doctors don't say and what deaf people know to be true is ASL does not take away the ability of a child to speak. In fact, it enhances it. Because it enhances their brain power. And so that can be applied to anything, including learning speech. It even enhances their level of literacy. So, the exact opposite is true.

Elizabeth:

I would think having ASL, having a language is less segregating because when I was reading about you and reading things that you've written, it really was emotional for me to think of some deaf people or deaf students and how it does feel a little like second class citizens, or it could feel that way. My mom has hearing loss, and sometimes she'll say, What? I can't hear what you're saying. And it could be very easy for a big conversation to just cut her out. Because, oh, she just can't hear us. So we're just going to ignore that person and that person, those people could just get let out of the whole conversation of the whole lesson of the whole group. And you just keep doing this time and time again and suddenly the people who can't hear as well or hear at all, feel like they're just not a part of anything so if you can sign, if they can sign to you and you can sign to them, t hen you're cohesive again. Then you're a group.

Rachel Zemach:

Absolutely. So, a big part of language deprivation and the push for cochlear implantation and just the way that the majority of parents, 90 percent or so of parents in this country are raising their deaf children is without the parents learning sign language fluently. So, what happens is the child, it happened to me, it's what I mentioned at the beginning of this conversation, being at the dinner table with my family. And they're all talking, and I knew that the conversation was rich and wonderful and very important to me. It's who I am. That's my family. So that's my culture, my personal culture, my world. And yet, I couldn't understand a word of it. Because one on one, in a very quiet room, I can lip read to some degree. However, the moment even one person is added to the conversation, I'm gone. I can't keep up, let alone a whole table full of people. So, this is the experience of all Deaf people, I would say worldwide. Anytime they have a family who doesn't sign, many families gesture, but they don't really sign. So they can gesture well enough to say to their child, you, go to sleep now, or come here, eat. They make up pantomime gestures, but it's not the same as a real language, where you can say, hey, do you know that your aunt died? Well, your grandmother died last week, and we have a funeral we're going to, and let me tell you about the story of her life. I mean, that's real language.

Elizabeth:

Or here's how I'm feeling. Here's my emotional journey today. Or I'm hurting about this. Here's what I went through at school today. Like you said, rich conversation. That's the fabric of, that's what connects people.

Rachel Zemach:

Right. Exactly. And if only parents, when they found out their baby was deaf, were told, Okay, go see an look into hearing devices. Maybe you want a cochlear implant, maybe not. Maybe a hearing aid. Sure. Nothing wrong with that. It's all good. Go do it. However, also, go meet a deaf adult. An advocate, a counselor, almost any deaf adult you find on the street will say exactly the same thing as I'm saying. And just talk to them. What kind of future does their child have? Make sure you consult both sides 50 50. The auditory side, given to you by a hearing person who has never been deaf. And the cultural, linguistic, psychological, social side. given to you by somebody who every day of their life, every hour, is deaf. Why isn't it seen that they are the specialists? It's amazing.

Elizabeth:

That is amazing. It's a real disconnect. Has it changed over years, over the decades? Have you seen that there's been more advocacy for Deaf people?

Rachel Zemach:

Yes and no. The yes is modern technology has helped us. Deaf people can communicate with each other and with hearing people, including on social media very easily. So, the beautiful thing I'm seeing, just to give you the positive first, is parents of deaf children are getting online and looking for Facebook groups, etc., of deaf organizations, and they're saying, Hey, I have a deaf baby, I'm in grief, I'm in shock, what should I do? Can you help? And deaf people are answering. Learn sign language, please!

Elizabeth:

Ah,

Rachel Zemach:

They're giving advice. And that connection is a very powerful, wonderful thing. However, medical professionals are often the only people parents talk to. Or they totally overwhelm the little bit of advice the person may get from a deaf person one day. Because you have 99 percent medical professionals telling you cochlear implant is the only way to go. Do it fast. Do it no matter what. Re mortgage your house if you have to do it. It'll change your child's life. And then you have one deaf person saying, yeah, but don't forget to sign. And these 99 percent medical and educational professionals are telling you, don't worry about sign language. In fact, you should really try and avoid it. So parents are in a real conundrum. So, back to your question. Modern technology is helpful. Hollywood right now is deafness. For example the movie Koda.

Elizabeth:

yeah.

Rachel Zemach:

I Want to tell you something. Just now I said showcasing deafness, and my caption showcasing Jeff Smith. So, I don't know who that is. Yeah, it's often very funny the mistakes captions make.

Elizabeth:

It's, not always perfect. Wow.

Rachel Zemach:

is showing more and more Movies, TV shows, Broadway plays, and they are being directed or written by or acted by deaf people. So they're accurate, and that's fantastic. And sign language is very sexy. Hearing people are taking sign language in huge numbers, it's the third most spoken language, used language, studied language in the country. it only comes after Spanish and French, I believe. And There are a lot of wonderful deaf leaders. There are wonderful deaf organizations. There's one called LEAD K, and it's focused specifically on zero to five years old. Getting those children kindergarten ready. In other words, making sure they have a language. by the time they enter kindergarten. It's doing very good work. Deaf people are constantly trying to fight for what's right for their children. And for strangers' children. There's a lot of passion. That's the good. Here's the bad news. From a deaf point of view, from my point of view, things are almost getting worse. Because as cochlear implants get more and more popular. And the more other people think, okay, well that must be right. They don't look at, why are deaf people so skeptical? Why are they so urgently trying to warn us not to think that way? The medical profession is getting very rich off cochlear implants. I believe it's 90, 000 for the surgery and the services, the follow up services. Audiology visits, speech therapy, etc. comes to 90, 000 average

Elizabeth:

Wow. Per

Rachel Zemach:

side.Ideite.

Elizabeth:

As a parent, especially with a little baby you start just taking advice from a doctor you don't know any better you've never been in this position before you're going to take the advice from the quote unquote expert. Expert. who is the doctor telling you what to do? So you use the word conundrum before. I think that really is a challenge to say, no, I'm not going to do this. Cause every parent wants to do what's best for their child. And if this is what you're being told is best for your child, you're probably going to do it.

Rachel Zemach:

Yeah, exactly. My advice to those parents is to talk to Deaf people, get to know the Deaf community, start reading what Deaf people think, Deaf leaders think. Also, listen to the medical people, but really do your homework. Look

Elizabeth:

So

Rachel Zemach:

sides of cochlear implants, the pros and the cons. And, learn sign language. Because, if you learn it, and use it, even if you're not super fluent yet, your child will get a language and you will have a language to communicate with your child with for the rest of your lives together.

Elizabeth:

I wanted to ask a little about your book. It's such an accomplishment to write a book, so congratulations. How did you keep going? Maybe some of it was your writing group, but I think it just takes a lot of commitment and perseverance. So what kind of got you through the tough times that I think every author seems to confront when they're, writing a book.

Rachel Zemach:

a huge undertaking. It took me five years to write it, two years to find a publisher, and incredibly competitive out there, and the gatekeepers the agents and the publishers are hearing. So, they don't understand the issues. And they didn't understand the need for this book. And they made all kinds of assumptions about the book. However, I was really determined and passionate about it, because my job teaching deaf children showed me how important it was, and I loved the kids and I loved teaching. And the children were really wonderful. They were really extraordinary, smart, kind people, and their parents were too. The administration where I taught was very difficult. And they had a mindset that made Deaf Identity, Deaf Pride, a negative. They saw it as a negative. And yet, within the classroom, the children showed me every day that was a positive. I finally left after 10 years. I couldn't take it anymore. It was a hostile work environment and it finally wore me down, but I didn't want that to be the end of it. I wanted to do something with the experience and what I had seen, what I had been through and what I had learned, try to do something to improve things and I left and went to teach at a deaf school, a very different environment, and very wonderful Something happened to one of my former students who had stayed in the public school system. it was quite devastating and made me more determined. And then I found out I have Stage four cancer. So that made me realize that I can't waste any time here at all. So all these things put together made me retire early and get busy and not let anything stop me.

Elizabeth:

How are you feeling? Are you in recovery?

Rachel Zemach:

There isn't any recovery, but I'm happy I got the book done. I'm relieved, and I'm relieved it got published, and I'm relieved that it's out there, and people are beginning to know about it.

Elizabeth:

It's received amazing reviews. I wanted to get, some advice from you on ways that hearing people can help advocate for the deaf community. And also some words or behaviors that maybe people should avoid when meeting or talking to deaf people.

Rachel Zemach:

Okay. That's a great opportunity for me. Thank you. Words to avoid are hearing impaired. I know that I used that in this interview, so I'm a hypocrite but it's best to avoid it. It's considered offensive. Hearing people think that it's a kind word because they're trying to avoid the word deaf. But deaf people think that it's an insulting term. And the word deaf is a positive.

Elizabeth:

Good to know.

Rachel Zemach:

Yeah. In addition to hearing impaired of course, mute and dumb are not considered very polite. They are still used. People still say deaf and dumb. One of them was a doctor that I went to recently and she said, I have a client whose parents are deaf and dumb. I said, please don't use the word dumb. And she said, well, that's what he told me, that his parents are deaf and dumb. She wanted to argue with me about it. When I was trying to give her a tip.

Elizabeth:

Amazing.

Rachel Zemach:

Other words not to use are, well, this one's a little tricky, but I'll simplify it. The word hard of hearing, again, hearing people often assume that hard of hearing is better than deaf. And they also assume that they can make a judgment on who is hard of hearing and who is deaf. But really, it's a matter of what you identify as. So, people meeting me would say, Oh, she's hard of hearing, she can talk, she can lip read, etc. But if you ask me, I'll say I'm Deaf. And not only that, but I'm Deaf with a capital D. That's another issue is lowercase and uppercase D. I won't get into that, but I'll say trust the person to know what they need in terms of communication, what their identity is, respect them enough to follow what they say rather than putting your own assumptions on them. Have the courage to ask them. How can I communicate with you? What do you prefer? Write it down. Whatever you do, I beg you. I beg you. Don't do what almost everybody does. Don't speak to them and say, Oh, but you can lip read, right? Because what you're really saying without meaning to is I'm going to put the burden of communication on your shoulders a hundred percent because I know that some people can lip read. I've heard of it. So, you can lipread. Don't do that. Write it down. Write it down. How can I best communicate with you? And give it to them. And they might say, oh, hey, just talk to me. I'll lipread. Okay. But you ask.

Elizabeth:

But don't assume that.

Rachel Zemach:

Right. And they might say, do you know sign language? Or they might say, keep writing. Or they might say, let's use the phone for a voice to text app. Just talk into your phone and show me the captions. But respect them enough to ask. And if they ask for accommodations, if they say, hey, I'm deaf, I want to come to this event, but I need an interpreter. Don't say no. We don't do that. We don't provide that. We don't have that. Or go, you have to bring your own interpreter. Just ask them, can you give me any more information? Or Google it. And see if they have a legal right to have an interpreter in your environment. And then say, I'll work on it. Don't shut it down without really knowing where they're coming from or what their legal rights are. I would also say, When you find out that somebody has a hearing issue or a deaf child, don't start pushing cochlear implants on them. So everything you talk to them about, keep in mind that they are the experts of their life experience. It doesn't matter what you have seen on TV, or what your grandmother was like, or, that you had a deaf child in your class 20 years ago. No, they're an individual.

Elizabeth:

Thank you. That's really wonderful advice. Everyone is an individual with individual needs.

Rachel Zemach:

Yeah.

Elizabeth:

Thank you for all of your stories and sharing your experiences and I wish you good health and please keep writing.

Rachel Zemach:

Thank you. Thank you so much for letting me be on this show. It's a real pleasure.

I consider it a real gift to get to meet lovely people like Rachel who teach me so much in such a relatively short amount of time. Here are some of my takeaways from our conversation. Number one: Humans can be remarkably adaptable. Rachel's life changed dramatically at age 10 and yet she adjusted quickly and now considers her deafness a great gift. Two, find your community and appreciate its strengths. Rachel rattled off support, knowledge, camaraderie, humor, solutions, coping skills, politics, passion about the deaf community just off the top of her head, which was super inspiring to me. When faced with a medical issue, do your homework, get second opinions, and talk to those dealing with the issue itself. Don't just rely on the advice of one person, even if that person is a professional. Four: Be intentional about how you communicate with Deaf people. Don't assume they can lipread or put the burden of communication fully on their shoulders. And finally, number five: this may sound simple, but it's always worth repeating. Be considerate of other people. There are so many things we take for granted each day that are challenging for someone else. I'm so grateful to Rachel Zemach for being part of my podcast. If you'd like to learn more about Rachel and her book, The Butterfly Cage, check out the show notes for this episode. if you like listening to interviews with people who've dealt with adversity and come out with some amazing perspectives, you might want to listen to episode 58 with Terry Tucker, who's one of the most uplifting and inspirational people I've ever met while dealing with a serious illness. And episode 13, when Karen Peterson shared about her alcoholism, treatment and recovery. If you haven't yet subscribed to this podcast, please do, and please tell a few friends about it too. I'm Elizabeth Pearson Garr. Thanks for being curious about what it's like.