December 13, 2023 • 40 mins
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?
- Link up with her on LinkedIn: https://www.linkedin.com/in/rachel-zemach/
- Tweet her on X/Twitter: https://twitter.com/rachel_zemach
- Search up her website: www.rachelzemach.com
- Buy her book, The Butterfly Cage, at www.bookshop.org
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Rachel Zemach (00:08):
it happened to me, being at the dinner table
with my family.
And they're all talking, and Iknew that the conversation was
rich and wonderful and veryimportant to me.
It's who I am.
That's my family.
So that's my culture, mypersonal culture, my world.
(00:29):
And yet, I couldn't understand aword of it.
this is the experience of allDeaf people,
Hello, and welcome to what it'slike to the podcast that lets
you walk in someone else's shoesand live vicariously through
their unique experiences.
(00:49):
I'm your host, former journalistElizabeth Pearson Garr, each
episode, I'll be asking a newinterviewee, all the what, why,
when, and wheres of how they dowhat they do.
Before we get into today'sepisode, I wanna tell you about
another podcast you might enjoy.
Chris Bagg and Jesse Dukes hostUpper Middlebrow, a read along
podcast about books andsometimes other culture.
(01:10):
Both hosts are writers and enjoydeep curious dives of the books
they read and discuss.
The episodes are lightheartedand fun, sometimes a bit rambly,
but by asking questions of eachother and occasionally debating,
they often arrive at aheightened understanding of the
craft of storytelling.
Their podcast has differenttopics from mine, but what we
share is a deep curiosity and ajoy in exploration.
(01:33):
If you liked my conversationswith the actor, Barrett Swatek,
or the artist NinaKatchadourian, or the musician,
Brett Anderson, you'llparticularly appreciate Upper
Middle Brow.
Their current season kicked offwith a series about foodie
films, including Babette'sFeast, Big Night and Tampopo
that get you excited to cook anew recipe and watch a food
movie.
You can findthem@uppermiddlebrow.com or
(01:55):
wherever you find podcasts.
Alright, now on to today'sepisode.
Elizabeth (02:03):
I'd like to tell you a story.
Several years ago, a 10 year oldgirl named Rachel got into an
accident.
It wasn't a tragic accident, oras she remembers it,
particularly unpleasant, but itdid result in Rachel losing her
hearing.
It did not, however, impact herlove of language and literature.
Rachel Zemach grew up to becomea teacher of deaf children, an
(02:25):
advocate for the deaf community,and a published author.
Her book, The Butterfly Cage, isa memoir about her teaching
career.
She says parents are takingrisks not learning American Sign
Language.
We'll get into all of that andmore because Rachel is here on
my podcast.
Rachel, welcome.
I'm so glad to have you here.
Rachel Zemach (02:45):
Likewise, I'm glad to be here.
Thank you.
Elizabeth (02:48):
I should explain a little about how we're
conducting this interview.
Some people may think that deaffolks don't have speech, but
because you had hearing untilthe age of 10, you do have
speech.
And you're understanding mebecause we're using a closed
captioning system.
Is that right?
Rachel Zemach (03:04):
Correct.
I'm using my phone forcaptioning and I'm relying on it
a hundred percent.
So I'm looking back and forthfrom my phone to the screen, but
it's working very well so far.
Elizabeth (03:17):
Great.
Well, this is really wonderfulfor me to have you here.
Thank you.
I'm wondering if you can explainfor me a little, because you had
10 years as a hearing child, andthen you've spent the rest of
your life as a deaf person, ifyou can explain what it's like
to go through the world bothways, as a hearing person and as
a deaf person.
Rachel Zemach (03:37):
I don't remember that much about being hearing
because I was 10 when I becamedeaf, so very quickly it became
a big part of who I am.
Even within months after Ibecame deaf, I had no interest
in getting a cochlear implant,for example.
I was very clear that I'm deafand this is who I am I think a
(04:00):
lot of things about me are verydifferent because I was hearing
for 10 years.
For example, my speech and myknowledge of English came to me
very easily.
Effortlessly, because I hadnormal hearing for 10 years, or
almost normal hearing.
When I got home from thehospital, and suddenly I was
(04:21):
deaf in the year following that,I remember being at my family's
dinner table and not being ableto understand them.
And also coming home from thehospital and trying out a little
piano that we had called aclavichord.
And I used to play that and Icame home from the hospital and
(04:41):
tried it out and couldn't hearit at all.
So I remember, the realization,okay, life has changed.
And there were moments that itwas difficult, especially not
understanding my family.
Elizabeth (04:55):
at young teenager, after your accident and
realizing you were feeling a bitalienated from your family and
the conversations.
You didn't lose your love oflanguage and of learning.
How did you keep that up?
Did you turn to books a lot andyou just kept writing?
Rachel Zemach (05:13):
I think it was just too strong in me to kill,
We were raised on a lot ofliterature.
And a lot of storytelling, andhumor, and books.
Literature was a big part of ourlife.
My parents made children's booksfor a living.
So, our life was storytelling,and imagination and discussing
(05:35):
whatever book they were in themiddle of at that time.
I'm sure a lot of it had to dowith my father also and his love
of language.
And when I became deaf, Istarted wearing a hearing aid.
So with the hearing aid withlearning sign language when I
was 14 I kept up language skillsand then fell in love with sign
(05:55):
language.
It's an amazing language.
It's unlike any other.
Very enchanting and very funny.
Elizabeth (06:02):
Did your family learn ASL as well, or were you the
only one who learned it?
Rachel Zemach (06:07):
They didn't.
My mother tried and she feltguilty about not learning.
And a few times she asked me,you should I learn?
I'm so sorry.
But when she tried she couldn'tquite do it.
There was something about herbrain that was really struggling
to learn signs.
And I told her, don't worryabout it.
I can understand you one on one.
(06:28):
If I could go back in time, Iwould maybe do things
differently.
With my husband for sure, if Icould go back in time, I would
have insisted that he becomefluent before we go any further.
So, there are things you don'tknow because of the stage you
are at in your development, yourown identity.
And as a child, I was way notthere yet.
(06:51):
I guess when you are born into ahearing family and you have 10
years of hearing them, ask themto change that drastically is a
big thing.
Elizabeth (07:00):
I think we all have things we could look back in our
teenage years or at any point inour life and think, oh,
hindsight, I would have donethat differently.
So you are not alone in thatfeeling.
Rachel Zemach (07:12):
Yeah.
Elizabeth (07:13):
You have said that becoming deaf gave you some of
your life's greatest gifts.
I'm wondering if you can talkmore about that.
Rachel Zemach (07:21):
The community, the support, the camaraderie,
the knowledge they have, thehumor, the solutions, the coping
skills, the politics, thepassion, they're exceptional.
An example is I was in thehospital and they were trying to
get me to use a remoteinterpreter in the hospital and
(07:41):
It wasn't working, I was aboutto have brain surgery, the next
morning, and we were meetingwith my surgeon, he was there,
and they brought the computerwith the remote interpreter, but
they had forgot to charge it up,and so the screen was black, and
I was left out of thisconversation about my brain
surgery the next morning.
(08:02):
And.
I had my phone with me, and Iwas very frustrated.
I posted, on Facebook, where Ihave many deaf friends, and I
told them what was going on, andwithin a few minutes I had tons
of answers, and they weretelling me this is wrong, it's
(08:23):
illegal, you have the right torefuse VRI and demand in person
interpreters.
This is how you do it.
This is the paper that you showthem.
I can come and tell them inperson if you want.
This was from a woman I barelyknew.
Elizabeth (08:39):
wow.
Rachel Zemach (08:40):
I can call the hospital and I'll explain it to
them, instantly if you want andI felt so lucky that I had this
community.
They understood how I felt andnobody else did, not even my
family.
My husband didn't understand, mydaughters didn't completely
understand.
The doctors had neverexperienced it.
(09:00):
They're all good people, butthey had no clue how it feels or
what my legal rights were.
And the deaf community had itright at their fingertips.
And they're funny.
There's a lot of humor in thedeaf world.
I guess an oppressed group comesup with humor to survive.
And the deaf historically havebeen very oppressed.
(09:21):
Things have gotten better.
The shocking thing is how littlethey've gotten better.
In the real world, in schools,in medical settings, any time we
want access to an event, maybewe wish we could go see a play
or an event at a library.
Or we want to put our deaf childin a after school art program.
(09:44):
Or we want to know what oursurgeon is saying the night
before we have brain surgery.
In all of those settings, wehave 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 theright to get it.
It's a fight.
(10:04):
So, it's hard.
Elizabeth (10:06):
Yeah.
That sounds like an incrediblegroup of people who will
confront the fights with supportand humor and love.
Rachel Zemach (10:15):
And they'll galvanize.
Like, if a deaf school is beingthreatened with shutdown, which
all over the country, deaf clubshave shut down, and deaf schools
are closing.
And, the deaf community willrally and fight to keep it open.
Elizabeth (10:31):
Are there certain things that you miss being able
to do that you were able to doas a kid?
I mean, you mentioned playingthe piano.
Or do you feel like theopportunities, the gifts that
you've been given, from beingdeaf, you lean into the positive
things and don't think about thethings that you're not able to
do now.
Rachel Zemach (10:49):
Yeah, once in a blue moon, I'll have a moment of
thinking, wow, this is hard.
I get frustrated with hearingpeople usually, with
communication, with hearingpeople.
Part of the problem is that I'moften using my voice in public
and hearing people are thereforetalking back to me.
(11:10):
And that doesn't work.
Elizabeth (11:11):
Right.
Rachel Zemach (11:12):
that's on me.
I could easily just not use myvoice.
And they would respond a lotbetter.
Again, it's ironic.
Sometimes I wish I could hearthe words to songs.
Or, I wish I could hear TV.
For example, I like Britishaccents, and if I'm watching a
British TV show, when I turn thesound really loud, and I have my
(11:34):
hearing aid on, I still don'treally catch the difference
between the voices and thebackground noise or the music
that they play, and it'sfrustrating.
And for sure, when I'm aroundhearing people in a social
setting, It's brutal, My husbandand I met new friends recently,
and I like them very much,however they're hearing.
(11:57):
And they want to get together asa 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 voicesat the same time, and the voices
of other people around us.
And, it's extremely exhausting,and demoralizing, and almost
(12:20):
always leaves me with the sensethat this was not worth it.
Let me hang out with deafpeople, and that's it.
This is too hard.
So that's the honest answer.
Although, most of the time, whenI do hang out with deaf people,
I feel so lucky that I'm justconstantly grateful that I
(12:41):
learned sign language when I was14.
And I happened into that world.
And so my mission in life rightnow, if I were to write another
book, would be to write a bookfor 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 closerto having all of those positive
(13:05):
things in their life.
Elizabeth (13:06):
Is it exhausting for you to have a conversation like
this?
Rachel Zemach (13:09):
Like, this is not too bad because I have captions.
During the pandemic, I joined awriting group when a deaf friend
of mine mentioned this kind ofcaptions.
I'd never heard of it.
And she told me how to do it.
And thanks to that kind oftechnology, I started attending
a writing group that's wonderfulpeople, sweet, supportive, kind,
(13:33):
hearing people who really helpedme get my book done.
Show me that I was on the righttrack.
However, when the pandemicstarted changing, and people
were meeting in person, thegroup was all excited because
they could meet in person.
And I told them, look, I'm gonnabe out.
When that happens, it's over forme.
(13:55):
I won't be able to attendanymore.
And they have gatherings um,That I, can't go on, dinners and
hikes If I went, it would beincredibly frustrating.
I had them all over to my house,but I got an interpreter.
it's exhausting when you don'thave access, when you don't have
captions, or when the captionsaren't working, or when you
(14:18):
don't have an interpreter, thenit's really exhausting.
But when you do, it can bewonderful.
It's not the same as directcommunication.
That's what you get when you'rearound deaf people.
Elizabeth (14:29):
The conversation flows in a different way.
Can you explain, for those whomay not know, a cochlear
implant?
What that is and perhaps why youdidn't get it.
Rachel Zemach (14:40):
It's surgery that is done in the cochlea of deaf
people, and it's frequentlyrecommended by the majority of
doctors and audiologists in avery aggressive way these days.
So the medical view of it, isthat it's a miracle, it's a
(15:03):
must, it's a clear solution tobeing deaf or even hard of
hearing, and that it would beridiculous not to get one.
Many deaf people I know havethem and don't use them.
In fact, 47% of all people inthe U.
S.
who were implanted as childrendon't use them as adults.
(15:26):
And among my friends, I do havesome friends who use them and
like them, but I also have manywho wish they didn't have it,
who have medical problems fromthem, who very much dislike
having it forced on them bydoctors and disagree with how
(15:46):
frequently they're recommended.
Elizabeth (15:48):
Can you go into some of the issues?
I, thought it was interestingwhen I was doing some research
prior to interviewing you.
It's not just a potentialmedical problem one may have,
but a whole bunch of otherissues that might result.
Can you explain some of those?
Rachel Zemach (16:04):
Yes, and I'm really glad you asked this, the
number one issue is languagedeprivation.
Ironically, cochlear implantscontribute to that rather than
solving it.
And this is the thing that mostparents don't understand until
it's too late until they'velearned the hard way by
(16:24):
experience and experience thatthey cannot really reverse
because the damage is alreadydone to their children.
So the basic issue is that welearn language from birth to
five years old, especially well.
Our brains are suited forlearning a language.
(16:44):
And it doesn't matter whatlanguage it is.
Sign language is a language andit's totally on a par with other
languages.
When it's given to a baby,American Sign Language, of
course, other countries havetheir own sign languages, and
it's true of them, too.
But the reason I emphasizeAmerican Sign Language is that
(17:07):
sea signs is something that'sused with many deaf children,
and it's not a language.
So, I'm referring only to ASL, areal language.
When it's given to babies,babies are exposed constantly
ASL, American Sign Language,they start picking up all the
(17:27):
benefits to humans that languagehas.
And so their brains become verystrong, very capable, very ready
for education, ready forlearning, language, for
everything.
Whereas, if you don't give adeaf child sign language until
(17:48):
later in life, it could be theage of six when they finally go
to school and maybe they havesign language from their
teachers.
It could be later when they goto a deaf program when their
other programs are not working.
Finally the parent puts them ina deaf program.
But any time after the age offive, if they have not had a
(18:10):
solid, comprehensive, reallanguage fed to their brain on a
regular basis, they're at a hugedisadvantage.
And we call it LanguageDeprivation Syndrome.
And 70 percent of all deaf andhard of hearing children have
it.
It's extreme and the impact ithas on people throughout their
(18:32):
lives is extreme as well.
When I was a teacher, maybe 98percent of my students were
extremely language deprived.
There were only one or twostudents who already had a
language that was spoken Englishbecause they had some hearing
and their parents spoke a lot tothem.
(18:53):
But educational aspect isdebilitated by the fact that you
have no language to teach thekids with.
First you have to teach themlanguage before you can actually
teach them.
I want to drive home theconnection between language
acquisition or deprivation andcochlear implants.
(19:14):
So what happens is a baby willbe identified as being deaf or
as severely hearing impaired, asthe doctors call it.
And the parents are told, don'tworry, just get your kid a
cochlear implant, or twocochlear implants, one on each
side, immediately.
ASAP.
(19:35):
It could be two months old, andit has this very serious surgery
done on its head.
Where it's quite invasive.
But the doctors say get it asearly as possible.
And of course parents do it.
They have no idea why theyshouldn't.
All they know is that everysingle doctor they go to tells
(19:56):
them get a cochlear implantquickly.
It'll solve your problems.
So they do.
The trouble is that the doctorsalso say, don't learn sign
language.
And that's where the problemlies.
Elizabeth (20:10):
Why would they say that?
Why would the doctor say don'tlearn ASL?
Because what I've read is howuseful that would be.
In fact, you advocate ifeveryone could start learning
ASL, all kids in school couldlearn it, how many problems
could be solved.
So why would doctors say to theparents of deaf or severely
(20:30):
hearing impaired, don't learnit?
What would be the harm?
Even I tried to learn some, mychildren had full hearing, but
just babies pick up on signlanguage before they pick up on,
verbal cues.
They can express themselves thatway also.
So that seems really contrary.
Yeah.
Rachel Zemach (20:46):
Right, the benefits of ASL are
extraordinary, however, what thedoctors say is that if you learn
sign language and if you exposeyour kid to sign language, they
won't be motivated to use theirears.
Or their speech.
So the doctors pose it as aneither or thing for the parents.
(21:09):
You have to choose one or theother.
Do you want your child to be inthe deaf world, and live in the
deaf world, and be segregated ina deaf community?
Or do you want them to live inthe hearing world?
And of course, any parent wouldsay, well, the hearing world
sounds better.
The trouble is that what thedoctors don't say and what deaf
(21:32):
people know to be true is ASLdoes not take away the ability
of a child to speak.
In fact, it enhances it.
Because it enhances their brainpower.
And so that can be applied toanything, including learning
speech.
It even enhances their level ofliteracy.
(21:52):
So, the exact opposite is true.
Elizabeth (21:55):
I would think having ASL, having a language is less
segregating because when I wasreading about you and reading
things that you've written, itreally was emotional for me to
think of some deaf people ordeaf students and how it does
feel a little like second classcitizens, or it could feel that
way.
My mom has hearing loss, andsometimes she'll say, What?
(22:19):
I can't hear what you're saying.
And it could be very easy for abig conversation to just cut her
out.
Because, oh, she just can't hearus.
So we're just going to ignorethat person and that person,
those people could just get letout of the whole conversation of
the whole lesson of the wholegroup.
And you just keep doing thistime and time again and suddenly
(22:41):
the people who can't hear aswell or hear at all, feel like
they're just not a part ofanything so if you can sign, if
they can sign to you and you cansign to them, t hen you're
cohesive again.
Then you're a group.
Rachel Zemach (22:52):
Absolutely.
So, a big part of languagedeprivation and the push for
cochlear implantation and justthe way that the majority of
parents, 90 percent or so ofparents in this country are
raising their deaf children iswithout the parents learning
(23:14):
sign language fluently.
So, what happens is the child,it happened to me, it's what I
mentioned at the beginning ofthis conversation, being at the
dinner table with my family.
And they're all talking, and Iknew that the conversation was
rich and wonderful and veryimportant to me.
(23:36):
It's who I am.
That's my family.
So that's my culture, mypersonal culture, my world.
And yet, I couldn't understand aword of it.
Because one on one, in a veryquiet room, I can lip read to
some degree.
However, the moment even oneperson is added to the
conversation, I'm gone.
(23:57):
I can't keep up, let alone awhole table full of people.
So, this is the experience ofall Deaf people, I would say
worldwide.
Anytime they have a family whodoesn't sign, many families
gesture, but they don't reallysign.
So they can gesture well enoughto say to their child, you, go
(24:18):
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 lastweek, and we have a funeral
we're going to, and let me tellyou about the story of her life.
(24:39):
I mean, that's real language.
Elizabeth (24:42):
Or here's how I'm feeling.
Here's my emotional journeytoday.
Or I'm hurting about this.
Here's what I went through atschool today.
Like you said, richconversation.
That's the fabric of, that'swhat connects people.
Rachel Zemach (24:54):
Right.
Exactly.
And if only parents, when theyfound out their baby was deaf,
were told, Okay, go see an lookinto hearing devices.
Maybe you want a cochlearimplant, maybe not.
Maybe a hearing aid.
Sure.
Nothing wrong with that.
It's all good.
Go do it.
(25:15):
However, also, go meet a deafadult.
An advocate, a counselor, almostany deaf adult you find on the
street will say exactly the samething as I'm saying.
And just talk to them.
What kind of future does theirchild have?
Make sure you consult both sides50 50.
The auditory side, given to youby a hearing person who has
(25:38):
never been deaf.
And the cultural, linguistic,psychological, social side.
given to you by somebody whoevery day of their life, every
hour, is deaf.
Why isn't it seen that they arethe specialists?
It's amazing.
Elizabeth (25:54):
That is amazing.
It's a real disconnect.
Has it changed over years, overthe decades?
Have you seen that there's beenmore advocacy for Deaf people?
Rachel Zemach (26:05):
Yes and no.
The yes is modern technology hashelped us.
Deaf people can communicate witheach other and with hearing
people, including on socialmedia very easily.
So, the beautiful thing I'mseeing, just to give you the
positive first, is parents ofdeaf children are getting online
(26:26):
and looking for Facebook groups,etc., of deaf organizations, and
they're saying, Hey, I have adeaf 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 (26:42):
Ah,
Rachel Zemach (26:43):
They're giving advice.
And that connection is a verypowerful, wonderful thing.
However, medical professionalsare often the only people
parents talk to.
Or they totally overwhelm thelittle bit of advice the person
may get from a deaf person oneday.
Because you have 99 percentmedical professionals telling
(27:06):
you cochlear implant is the onlyway to go.
Do it fast.
Do it no matter what.
Re mortgage your house if youhave to do it.
It'll change your child's life.
And then you have one deafperson saying, yeah, but don't
forget to sign.
And these 99 percent medical andeducational professionals are
telling you, don't worry aboutsign language.
(27:27):
In fact, you should really tryand avoid it.
So parents are in a realconundrum.
So, back to your question.
Modern technology is helpful.
Hollywood right now is deafness.
For example the movie Koda.
Elizabeth (27:43):
yeah.
Rachel Zemach (27:44):
I Want to tell you something.
Just now I said showcasingdeafness, and my caption
showcasing Jeff Smith.
So, I don't know who that is.
Yeah, it's often very funny themistakes captions make.
Elizabeth (28:04):
It's, not always perfect.
Wow.
Rachel Zemach (28:09):
is showing more and more Movies, TV shows,
Broadway plays, and they arebeing directed or written by or
acted by deaf people.
So they're accurate, and that'sfantastic.
And sign language is very sexy.
Hearing people are taking signlanguage in huge numbers, it's
(28:32):
the third most spoken language,used language, studied language
in the country.
it only comes after Spanish andFrench, I believe.
And There are a lot of wonderfuldeaf leaders.
There are wonderful deaforganizations.
There's one called LEAD K, andit's focused specifically on
(28:53):
zero to five years old.
Getting those childrenkindergarten ready.
In other words, making sure theyhave a language.
by the time they enterkindergarten.
It's doing very good work.
Deaf people are constantlytrying to fight for what's right
for their children.
And for strangers' children.
There's a lot of passion.
That's the good.
(29:13):
Here's the bad news.
From a deaf point of view, frommy point of view, things are
almost getting worse.
Because as cochlear implants getmore and more popular.
And the more other people think,okay, well that must be right.
They don't look at, why are deafpeople so skeptical?
Why are they so urgently tryingto warn us not to think that
(29:37):
way?
The medical profession isgetting very rich off cochlear
implants.
I believe it's 90, 000 for thesurgery and the services, the
follow up services.
Audiology visits, speechtherapy, etc.
comes to 90, 000 average
Elizabeth (29:56):
Wow.
Per
Rachel Zemach (29:57):
side.Ideite.
Elizabeth (29:58):
As a parent, especially with a little baby
you start just taking advicefrom a doctor you don't know any
better you've never been in thisposition before you're going to
take the advice from the quoteunquote expert.
Expert.
who is the doctor telling youwhat to do?
So you use the word conundrumbefore.
I think that really is achallenge to say, no, I'm not
going to do this.
(30:18):
Cause every parent wants to dowhat's best for their child.
And if this is what you're beingtold is best for your child,
you're probably going to do it.
Rachel Zemach (30:25):
Yeah, exactly.
My advice to those parents is totalk to Deaf people, get to know
the Deaf community, startreading what Deaf people think,
Deaf leaders think.
Also, listen to the medicalpeople, but really do your
homework.
Look
Elizabeth (30:42):
So
Rachel Zemach (30:42):
sides of cochlear implants, the pros and the cons.
And, learn sign language.
Because, if you learn it, anduse it, even if you're not super
fluent yet, your child will geta language and you will have a
language to communicate withyour child with for the rest of
your lives together.
Elizabeth (31:03):
I wanted to ask a little about your book.
It's such an accomplishment towrite a book, so
congratulations.
How did you keep going?
Maybe some of it was yourwriting group, but I think it
just takes a lot of commitmentand perseverance.
So what kind of got you throughthe tough times that I think
every author seems to confrontwhen they're, writing a book.
Rachel Zemach (31:25):
a huge undertaking.
It took me five years to writeit, two years to find a
publisher, and incrediblycompetitive out there, and the
gatekeepers the agents and thepublishers are hearing.
So, they don't understand theissues.
And they didn't understand theneed for this book.
(31:46):
And they made all kinds ofassumptions about the book.
However, I was really determinedand passionate about it, because
my job teaching deaf childrenshowed me how important it was,
and I loved the kids and I lovedteaching.
And the children were reallywonderful.
They were really extraordinary,smart, kind people, and their
(32:11):
parents were too.
The administration where Itaught was very difficult.
And they had a mindset that madeDeaf 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.
(32:31):
I couldn't take it anymore.
It was a hostile workenvironment and it finally wore
me down, but I didn't want thatto be the end of it.
I wanted to do something withthe experience and what I had
seen, what I had been throughand what I had learned, try to
do something to improve thingsand I left and went to teach at
(32:53):
a deaf school, a very differentenvironment, and very wonderful
Something happened to one of myformer students who had stayed
in the public school system.
it was quite devastating andmade me more determined.
And then I found out I haveStage four cancer.
So that made me realize that Ican't waste any time here at
(33:14):
all.
So all these things put togethermade me retire early and get
busy and not let anything stopme.
Elizabeth (33:23):
How are you feeling?
Are you in recovery?
Rachel Zemach (33:26):
There isn't any recovery, but I'm happy I got
the book done.
I'm relieved, and I'm relievedit got published, and I'm
relieved that it's out there,and people are beginning to know
about it.
Elizabeth (33:39):
It's received amazing reviews.
I wanted to get, some advicefrom you on ways that hearing
people can help advocate for thedeaf community.
And also some words or behaviorsthat maybe people should avoid
when meeting or talking to deafpeople.
Rachel Zemach (33:56):
Okay.
That's a great opportunity forme.
Thank you.
Words to avoid are hearingimpaired.
I know that I used that in thisinterview, so I'm a hypocrite
but it's best to avoid it.
It's considered offensive.
Hearing people think that it's akind word because they're trying
to avoid the word deaf.
But deaf people think that it'san insulting term.
(34:19):
And the word deaf is a positive.
Elizabeth (34:21):
Good to know.
Rachel Zemach (34:22):
Yeah.
In addition to hearing impairedof 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 Iwent to recently and she said, I
have a client whose parents aredeaf and dumb.
I said, please don't use theword dumb.
And she said, well, that's whathe told me, that his parents are
(34:44):
deaf and dumb.
She wanted to argue with meabout it.
When I was trying to give her atip.
Elizabeth (34:50):
Amazing.
Rachel Zemach (34:51):
Other words not to use are, well, this one's a
little tricky, but I'll simplifyit.
The word hard of hearing, again,hearing people often assume that
hard of hearing is better thandeaf.
And they also assume that theycan make a judgment on who is
hard of hearing and who is deaf.
But really, it's a matter ofwhat you identify as.
(35:14):
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'mDeaf.
And not only that, but I'm Deafwith a capital D.
That's another issue islowercase and uppercase D.
I won't get into that, but I'llsay trust the person to know
(35:36):
what they need in terms ofcommunication, what their
identity is, respect them enoughto follow what they say rather
than putting your ownassumptions 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.
(35:56):
I beg you.
Don't do what almost everybodydoes.
Don't speak to them and say, Oh,but you can lip read, right?
Because what you're reallysaying without meaning to is I'm
going to put the burden ofcommunication on your shoulders
a hundred percent because I knowthat some people can lip read.
I've heard of it.
(36:17):
So, you can lipread.
Don't do that.
Write it down.
Write it down.
How can I best communicate withyou?
And give it to them.
And they might say, oh, hey,just talk to me.
I'll lipread.
Okay.
But you ask.
Elizabeth (36:31):
But don't assume that.
Rachel Zemach (36:32):
Right.
And they might say, do you knowsign language?
Or they might say, keep writing.
Or they might say, let's use thephone for a voice to text app.
Just talk into your phone andshow me the captions.
But respect them enough to ask.
And if they ask foraccommodations, if they say,
(36:53):
hey, I'm deaf, I want to come tothis 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 yourown interpreter.
Just ask them, can you give meany more information?
Or Google it.
And see if they have a legalright to have an interpreter in
(37:15):
your environment.
And then say, I'll work on it.
Don't shut it down withoutreally knowing where they're
coming from or what their legalrights are.
I would also say, When you findout that somebody has a hearing
issue or a deaf child, don'tstart pushing cochlear implants
on them.
(37:35):
So everything you talk to themabout, keep in mind that they
are the experts of their lifeexperience.
It doesn't matter what you haveseen on TV, or what your
grandmother was like, or, thatyou had a deaf child in your
class 20 years ago.
No, they're an individual.
Elizabeth (37:55):
Thank you.
That's really wonderful advice.
Everyone is an individual withindividual needs.
Rachel Zemach (38:00):
Yeah.
Elizabeth (38:01):
Thank you for all of your stories and sharing your
experiences and I wish you goodhealth and please keep writing.
Rachel Zemach (38:09):
Thank you.
Thank you so much for letting mebe on this show.
It's a real pleasure.
I consider it a real gift to getto meet lovely people like
Rachel who teach me so much insuch a relatively short amount
of time.
Here are some of my takeawaysfrom our conversation.
Number one (38:26):
Humans can be remarkably adaptable.
Rachel's life changeddramatically at age 10 and yet
she adjusted quickly and nowconsiders her deafness a great
gift.
Two, find your community andappreciate its strengths.
Rachel rattled off support,knowledge, camaraderie, humor,
solutions, coping skills,politics, passion about the deaf
(38:47):
community just off the top ofher head, which was super
inspiring to me.
When faced with a medical issue,do your homework, get second
opinions, and talk to thosedealing with the issue itself.
Don't just rely on the advice ofone person, even if that person
is a professional.
Four (39:02):
Be intentional about how you communicate with Deaf
people.
Don't assume they can lipread orput the burden of communication
fully on their shoulders.
And finally, number five (39:10):
this may sound simple, but it's
always worth repeating.
Be considerate of other people.
There are so many things we takefor granted each day that are
challenging for someone else.
I'm so grateful to Rachel Zemachfor being part of my podcast.
If you'd like to learn moreabout Rachel and her book, The
Butterfly Cage, check out theshow notes for this episode.
if you like listening tointerviews with people who've
(39:32):
dealt with adversity and comeout with some amazing
perspectives, you might want tolisten to episode 58 with Terry
Tucker, who's one of the mostuplifting and inspirational
people I've ever met whiledealing with a serious illness.
And episode 13, when KarenPeterson shared about her
alcoholism, treatment andrecovery.
If you haven't yet subscribed tothis podcast, please do, and
(39:53):
please tell a few friends aboutit too.
I'm Elizabeth Pearson Garr.
Thanks for being curious aboutwhat it's like.
it happened to me, being at the dinner table
with my family.
And they're all talking, and Iknew that the conversation was
rich and wonderful and veryimportant to me.
It's who I am.
That's my family.
So that's my culture, mypersonal culture, my world.
(00:29):
And yet, I couldn't understand aword of it.
this is the experience of allDeaf people,
Hello, and welcome to what it'slike to the podcast that lets
you walk in someone else's shoesand live vicariously through
their unique experiences.
(00:49):
I'm your host, former journalistElizabeth Pearson Garr, each
episode, I'll be asking a newinterviewee, all the what, why,
when, and wheres of how they dowhat they do.
Before we get into today'sepisode, I wanna tell you about
another podcast you might enjoy.
Chris Bagg and Jesse Dukes hostUpper Middlebrow, a read along
podcast about books andsometimes other culture.
(01:10):
Both hosts are writers and enjoydeep curious dives of the books
they read and discuss.
The episodes are lightheartedand fun, sometimes a bit rambly,
but by asking questions of eachother and occasionally debating,
they often arrive at aheightened understanding of the
craft of storytelling.
Their podcast has differenttopics from mine, but what we
share is a deep curiosity and ajoy in exploration.
(01:33):
If you liked my conversationswith the actor, Barrett Swatek,
or the artist NinaKatchadourian, or the musician,
Brett Anderson, you'llparticularly appreciate Upper
Middle Brow.
Their current season kicked offwith a series about foodie
films, including Babette'sFeast, Big Night and Tampopo
that get you excited to cook anew recipe and watch a food
movie.
You can findthem@uppermiddlebrow.com or
(01:55):
wherever you find podcasts.
Alright, now on to today'sepisode.
Elizabeth (02:03):
I'd like to tell you a story.
Several years ago, a 10 year oldgirl named Rachel got into an
accident.
It wasn't a tragic accident, oras she remembers it,
particularly unpleasant, but itdid result in Rachel losing her
hearing.
It did not, however, impact herlove of language and literature.
Rachel Zemach grew up to becomea teacher of deaf children, an
(02:25):
advocate for the deaf community,and a published author.
Her book, The Butterfly Cage, isa memoir about her teaching
career.
She says parents are takingrisks not learning American Sign
Language.
We'll get into all of that andmore because Rachel is here on
my podcast.
Rachel, welcome.
I'm so glad to have you here.
Rachel Zemach (02:45):
Likewise, I'm glad to be here.
Thank you.
Elizabeth (02:48):
I should explain a little about how we're
conducting this interview.
Some people may think that deaffolks don't have speech, but
because you had hearing untilthe age of 10, you do have
speech.
And you're understanding mebecause we're using a closed
captioning system.
Is that right?
Rachel Zemach (03:04):
Correct.
I'm using my phone forcaptioning and I'm relying on it
a hundred percent.
So I'm looking back and forthfrom my phone to the screen, but
it's working very well so far.
Elizabeth (03:17):
Great.
Well, this is really wonderfulfor me to have you here.
Thank you.
I'm wondering if you can explainfor me a little, because you had
10 years as a hearing child, andthen you've spent the rest of
your life as a deaf person, ifyou can explain what it's like
to go through the world bothways, as a hearing person and as
a deaf person.
Rachel Zemach (03:37):
I don't remember that much about being hearing
because I was 10 when I becamedeaf, so very quickly it became
a big part of who I am.
Even within months after Ibecame deaf, I had no interest
in getting a cochlear implant,for example.
I was very clear that I'm deafand this is who I am I think a
(04:00):
lot of things about me are verydifferent because I was hearing
for 10 years.
For example, my speech and myknowledge of English came to me
very easily.
Effortlessly, because I hadnormal hearing for 10 years, or
almost normal hearing.
When I got home from thehospital, and suddenly I was
(04:21):
deaf in the year following that,I remember being at my family's
dinner table and not being ableto understand them.
And also coming home from thehospital and trying out a little
piano that we had called aclavichord.
And I used to play that and Icame home from the hospital and
(04:41):
tried it out and couldn't hearit at all.
So I remember, the realization,okay, life has changed.
And there were moments that itwas difficult, especially not
understanding my family.
Elizabeth (04:55):
at young teenager, after your accident and
realizing you were feeling a bitalienated from your family and
the conversations.
You didn't lose your love oflanguage and of learning.
How did you keep that up?
Did you turn to books a lot andyou just kept writing?
Rachel Zemach (05:13):
I think it was just too strong in me to kill,
We were raised on a lot ofliterature.
And a lot of storytelling, andhumor, and books.
Literature was a big part of ourlife.
My parents made children's booksfor a living.
So, our life was storytelling,and imagination and discussing
(05:35):
whatever book they were in themiddle of at that time.
I'm sure a lot of it had to dowith my father also and his love
of language.
And when I became deaf, Istarted wearing a hearing aid.
So with the hearing aid withlearning sign language when I
was 14 I kept up language skillsand then fell in love with sign
(05:55):
language.
It's an amazing language.
It's unlike any other.
Very enchanting and very funny.
Elizabeth (06:02):
Did your family learn ASL as well, or were you the
only one who learned it?
Rachel Zemach (06:07):
They didn't.
My mother tried and she feltguilty about not learning.
And a few times she asked me,you should I learn?
I'm so sorry.
But when she tried she couldn'tquite do it.
There was something about herbrain that was really struggling
to learn signs.
And I told her, don't worryabout it.
I can understand you one on one.
(06:28):
If I could go back in time, Iwould maybe do things
differently.
With my husband for sure, if Icould go back in time, I would
have insisted that he becomefluent before we go any further.
So, there are things you don'tknow because of the stage you
are at in your development, yourown identity.
And as a child, I was way notthere yet.
(06:51):
I guess when you are born into ahearing family and you have 10
years of hearing them, ask themto change that drastically is a
big thing.
Elizabeth (07:00):
I think we all have things we could look back in our
teenage years or at any point inour life and think, oh,
hindsight, I would have donethat differently.
So you are not alone in thatfeeling.
Rachel Zemach (07:12):
Yeah.
Elizabeth (07:13):
You have said that becoming deaf gave you some of
your life's greatest gifts.
I'm wondering if you can talkmore about that.
Rachel Zemach (07:21):
The community, the support, the camaraderie,
the knowledge they have, thehumor, the solutions, the coping
skills, the politics, thepassion, they're exceptional.
An example is I was in thehospital and they were trying to
get me to use a remoteinterpreter in the hospital and
(07:41):
It wasn't working, I was aboutto have brain surgery, the next
morning, and we were meetingwith my surgeon, he was there,
and they brought the computerwith the remote interpreter, but
they had forgot to charge it up,and so the screen was black, and
I was left out of thisconversation about my brain
surgery the next morning.
(08:02):
And.
I had my phone with me, and Iwas very frustrated.
I posted, on Facebook, where Ihave many deaf friends, and I
told them what was going on, andwithin a few minutes I had tons
of answers, and they weretelling me this is wrong, it's
(08:23):
illegal, you have the right torefuse VRI and demand in person
interpreters.
This is how you do it.
This is the paper that you showthem.
I can come and tell them inperson if you want.
This was from a woman I barelyknew.
Elizabeth (08:39):
wow.
Rachel Zemach (08:40):
I can call the hospital and I'll explain it to
them, instantly if you want andI felt so lucky that I had this
community.
They understood how I felt andnobody else did, not even my
family.
My husband didn't understand, mydaughters didn't completely
understand.
The doctors had neverexperienced it.
(09:00):
They're all good people, butthey had no clue how it feels or
what my legal rights were.
And the deaf community had itright at their fingertips.
And they're funny.
There's a lot of humor in thedeaf world.
I guess an oppressed group comesup with humor to survive.
And the deaf historically havebeen very oppressed.
(09:21):
Things have gotten better.
The shocking thing is how littlethey've gotten better.
In the real world, in schools,in medical settings, any time we
want access to an event, maybewe wish we could go see a play
or an event at a library.
Or we want to put our deaf childin a after school art program.
(09:44):
Or we want to know what oursurgeon is saying the night
before we have brain surgery.
In all of those settings, wehave 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 theright to get it.
It's a fight.
(10:04):
So, it's hard.
Elizabeth (10:06):
Yeah.
That sounds like an incrediblegroup of people who will
confront the fights with supportand humor and love.
Rachel Zemach (10:15):
And they'll galvanize.
Like, if a deaf school is beingthreatened with shutdown, which
all over the country, deaf clubshave shut down, and deaf schools
are closing.
And, the deaf community willrally and fight to keep it open.
Elizabeth (10:31):
Are there certain things that you miss being able
to do that you were able to doas a kid?
I mean, you mentioned playingthe piano.
Or do you feel like theopportunities, the gifts that
you've been given, from beingdeaf, you lean into the positive
things and don't think about thethings that you're not able to
do now.
Rachel Zemach (10:49):
Yeah, once in a blue moon, I'll have a moment of
thinking, wow, this is hard.
I get frustrated with hearingpeople usually, with
communication, with hearingpeople.
Part of the problem is that I'moften using my voice in public
and hearing people are thereforetalking back to me.
(11:10):
And that doesn't work.
Elizabeth (11:11):
Right.
Rachel Zemach (11:12):
that's on me.
I could easily just not use myvoice.
And they would respond a lotbetter.
Again, it's ironic.
Sometimes I wish I could hearthe words to songs.
Or, I wish I could hear TV.
For example, I like Britishaccents, and if I'm watching a
British TV show, when I turn thesound really loud, and I have my
(11:34):
hearing aid on, I still don'treally catch the difference
between the voices and thebackground noise or the music
that they play, and it'sfrustrating.
And for sure, when I'm aroundhearing people in a social
setting, It's brutal, My husbandand I met new friends recently,
and I like them very much,however they're hearing.
(11:57):
And they want to get together asa 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 voicesat the same time, and the voices
of other people around us.
And, it's extremely exhausting,and demoralizing, and almost
(12:20):
always leaves me with the sensethat this was not worth it.
Let me hang out with deafpeople, and that's it.
This is too hard.
So that's the honest answer.
Although, most of the time, whenI do hang out with deaf people,
I feel so lucky that I'm justconstantly grateful that I
(12:41):
learned sign language when I was14.
And I happened into that world.
And so my mission in life rightnow, if I were to write another
book, would be to write a bookfor 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 closerto having all of those positive
(13:05):
things in their life.
Elizabeth (13:06):
Is it exhausting for you to have a conversation like
this?
Rachel Zemach (13:09):
Like, this is not too bad because I have captions.
During the pandemic, I joined awriting group when a deaf friend
of mine mentioned this kind ofcaptions.
I'd never heard of it.
And she told me how to do it.
And thanks to that kind oftechnology, I started attending
a writing group that's wonderfulpeople, sweet, supportive, kind,
(13:33):
hearing people who really helpedme get my book done.
Show me that I was on the righttrack.
However, when the pandemicstarted changing, and people
were meeting in person, thegroup was all excited because
they could meet in person.
And I told them, look, I'm gonnabe out.
When that happens, it's over forme.
(13:55):
I won't be able to attendanymore.
And they have gatherings um,That I, can't go on, dinners and
hikes If I went, it would beincredibly frustrating.
I had them all over to my house,but I got an interpreter.
it's exhausting when you don'thave access, when you don't have
captions, or when the captionsaren't working, or when you
(14:18):
don't have an interpreter, thenit's really exhausting.
But when you do, it can bewonderful.
It's not the same as directcommunication.
That's what you get when you'rearound deaf people.
Elizabeth (14:29):
The conversation flows in a different way.
Can you explain, for those whomay not know, a cochlear
implant?
What that is and perhaps why youdidn't get it.
Rachel Zemach (14:40):
It's surgery that is done in the cochlea of deaf
people, and it's frequentlyrecommended by the majority of
doctors and audiologists in avery aggressive way these days.
So the medical view of it, isthat it's a miracle, it's a
(15:03):
must, it's a clear solution tobeing deaf or even hard of
hearing, and that it would beridiculous not to get one.
Many deaf people I know havethem and don't use them.
In fact, 47% of all people inthe U.
S.
who were implanted as childrendon't use them as adults.
(15:26):
And among my friends, I do havesome friends who use them and
like them, but I also have manywho wish they didn't have it,
who have medical problems fromthem, who very much dislike
having it forced on them bydoctors and disagree with how
(15:46):
frequently they're recommended.
Elizabeth (15:48):
Can you go into some of the issues?
I, thought it was interestingwhen I was doing some research
prior to interviewing you.
It's not just a potentialmedical problem one may have,
but a whole bunch of otherissues that might result.
Can you explain some of those?
Rachel Zemach (16:04):
Yes, and I'm really glad you asked this, the
number one issue is languagedeprivation.
Ironically, cochlear implantscontribute to that rather than
solving it.
And this is the thing that mostparents don't understand until
it's too late until they'velearned the hard way by
(16:24):
experience and experience thatthey cannot really reverse
because the damage is alreadydone to their children.
So the basic issue is that welearn language from birth to
five years old, especially well.
Our brains are suited forlearning a language.
(16:44):
And it doesn't matter whatlanguage it is.
Sign language is a language andit's totally on a par with other
languages.
When it's given to a baby,American Sign Language, of
course, other countries havetheir own sign languages, and
it's true of them, too.
But the reason I emphasizeAmerican Sign Language is that
(17:07):
sea signs is something that'sused with many deaf children,
and it's not a language.
So, I'm referring only to ASL, areal language.
When it's given to babies,babies are exposed constantly
ASL, American Sign Language,they start picking up all the
(17:27):
benefits to humans that languagehas.
And so their brains become verystrong, very capable, very ready
for education, ready forlearning, language, for
everything.
Whereas, if you don't give adeaf child sign language until
(17:48):
later in life, it could be theage of six when they finally go
to school and maybe they havesign language from their
teachers.
It could be later when they goto a deaf program when their
other programs are not working.
Finally the parent puts them ina deaf program.
But any time after the age offive, if they have not had a
(18:10):
solid, comprehensive, reallanguage fed to their brain on a
regular basis, they're at a hugedisadvantage.
And we call it LanguageDeprivation Syndrome.
And 70 percent of all deaf andhard of hearing children have
it.
It's extreme and the impact ithas on people throughout their
(18:32):
lives is extreme as well.
When I was a teacher, maybe 98percent of my students were
extremely language deprived.
There were only one or twostudents who already had a
language that was spoken Englishbecause they had some hearing
and their parents spoke a lot tothem.
(18:53):
But educational aspect isdebilitated by the fact that you
have no language to teach thekids with.
First you have to teach themlanguage before you can actually
teach them.
I want to drive home theconnection between language
acquisition or deprivation andcochlear implants.
(19:14):
So what happens is a baby willbe identified as being deaf or
as severely hearing impaired, asthe doctors call it.
And the parents are told, don'tworry, just get your kid a
cochlear implant, or twocochlear implants, one on each
side, immediately.
ASAP.
(19:35):
It could be two months old, andit has this very serious surgery
done on its head.
Where it's quite invasive.
But the doctors say get it asearly as possible.
And of course parents do it.
They have no idea why theyshouldn't.
All they know is that everysingle doctor they go to tells
(19:56):
them get a cochlear implantquickly.
It'll solve your problems.
So they do.
The trouble is that the doctorsalso say, don't learn sign
language.
And that's where the problemlies.
Elizabeth (20:10):
Why would they say that?
Why would the doctor say don'tlearn ASL?
Because what I've read is howuseful that would be.
In fact, you advocate ifeveryone could start learning
ASL, all kids in school couldlearn it, how many problems
could be solved.
So why would doctors say to theparents of deaf or severely
(20:30):
hearing impaired, don't learnit?
What would be the harm?
Even I tried to learn some, mychildren had full hearing, but
just babies pick up on signlanguage before they pick up on,
verbal cues.
They can express themselves thatway also.
So that seems really contrary.
Yeah.
Rachel Zemach (20:46):
Right, the benefits of ASL are
extraordinary, however, what thedoctors say is that if you learn
sign language and if you exposeyour kid to sign language, they
won't be motivated to use theirears.
Or their speech.
So the doctors pose it as aneither or thing for the parents.
(21:09):
You have to choose one or theother.
Do you want your child to be inthe deaf world, and live in the
deaf world, and be segregated ina deaf community?
Or do you want them to live inthe hearing world?
And of course, any parent wouldsay, well, the hearing world
sounds better.
The trouble is that what thedoctors don't say and what deaf
(21:32):
people know to be true is ASLdoes not take away the ability
of a child to speak.
In fact, it enhances it.
Because it enhances their brainpower.
And so that can be applied toanything, including learning
speech.
It even enhances their level ofliteracy.
(21:52):
So, the exact opposite is true.
Elizabeth (21:55):
I would think having ASL, having a language is less
segregating because when I wasreading about you and reading
things that you've written, itreally was emotional for me to
think of some deaf people ordeaf students and how it does
feel a little like second classcitizens, or it could feel that
way.
My mom has hearing loss, andsometimes she'll say, What?
(22:19):
I can't hear what you're saying.
And it could be very easy for abig conversation to just cut her
out.
Because, oh, she just can't hearus.
So we're just going to ignorethat person and that person,
those people could just get letout of the whole conversation of
the whole lesson of the wholegroup.
And you just keep doing thistime and time again and suddenly
(22:41):
the people who can't hear aswell or hear at all, feel like
they're just not a part ofanything so if you can sign, if
they can sign to you and you cansign to them, t hen you're
cohesive again.
Then you're a group.
Rachel Zemach (22:52):
Absolutely.
So, a big part of languagedeprivation and the push for
cochlear implantation and justthe way that the majority of
parents, 90 percent or so ofparents in this country are
raising their deaf children iswithout the parents learning
(23:14):
sign language fluently.
So, what happens is the child,it happened to me, it's what I
mentioned at the beginning ofthis conversation, being at the
dinner table with my family.
And they're all talking, and Iknew that the conversation was
rich and wonderful and veryimportant to me.
(23:36):
It's who I am.
That's my family.
So that's my culture, mypersonal culture, my world.
And yet, I couldn't understand aword of it.
Because one on one, in a veryquiet room, I can lip read to
some degree.
However, the moment even oneperson is added to the
conversation, I'm gone.
(23:57):
I can't keep up, let alone awhole table full of people.
So, this is the experience ofall Deaf people, I would say
worldwide.
Anytime they have a family whodoesn't sign, many families
gesture, but they don't reallysign.
So they can gesture well enoughto say to their child, you, go
(24:18):
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 lastweek, and we have a funeral
we're going to, and let me tellyou about the story of her life.
(24:39):
I mean, that's real language.
Elizabeth (24:42):
Or here's how I'm feeling.
Here's my emotional journeytoday.
Or I'm hurting about this.
Here's what I went through atschool today.
Like you said, richconversation.
That's the fabric of, that'swhat connects people.
Rachel Zemach (24:54):
Right.
Exactly.
And if only parents, when theyfound out their baby was deaf,
were told, Okay, go see an lookinto hearing devices.
Maybe you want a cochlearimplant, maybe not.
Maybe a hearing aid.
Sure.
Nothing wrong with that.
It's all good.
Go do it.
(25:15):
However, also, go meet a deafadult.
An advocate, a counselor, almostany deaf adult you find on the
street will say exactly the samething as I'm saying.
And just talk to them.
What kind of future does theirchild have?
Make sure you consult both sides50 50.
The auditory side, given to youby a hearing person who has
(25:38):
never been deaf.
And the cultural, linguistic,psychological, social side.
given to you by somebody whoevery day of their life, every
hour, is deaf.
Why isn't it seen that they arethe specialists?
It's amazing.
Elizabeth (25:54):
That is amazing.
It's a real disconnect.
Has it changed over years, overthe decades?
Have you seen that there's beenmore advocacy for Deaf people?
Rachel Zemach (26:05):
Yes and no.
The yes is modern technology hashelped us.
Deaf people can communicate witheach other and with hearing
people, including on socialmedia very easily.
So, the beautiful thing I'mseeing, just to give you the
positive first, is parents ofdeaf children are getting online
(26:26):
and looking for Facebook groups,etc., of deaf organizations, and
they're saying, Hey, I have adeaf 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 (26:42):
Ah,
Rachel Zemach (26:43):
They're giving advice.
And that connection is a verypowerful, wonderful thing.
However, medical professionalsare often the only people
parents talk to.
Or they totally overwhelm thelittle bit of advice the person
may get from a deaf person oneday.
Because you have 99 percentmedical professionals telling
(27:06):
you cochlear implant is the onlyway to go.
Do it fast.
Do it no matter what.
Re mortgage your house if youhave to do it.
It'll change your child's life.
And then you have one deafperson saying, yeah, but don't
forget to sign.
And these 99 percent medical andeducational professionals are
telling you, don't worry aboutsign language.
(27:27):
In fact, you should really tryand avoid it.
So parents are in a realconundrum.
So, back to your question.
Modern technology is helpful.
Hollywood right now is deafness.
For example the movie Koda.
Elizabeth (27:43):
yeah.
Rachel Zemach (27:44):
I Want to tell you something.
Just now I said showcasingdeafness, and my caption
showcasing Jeff Smith.
So, I don't know who that is.
Yeah, it's often very funny themistakes captions make.
Elizabeth (28:04):
It's, not always perfect.
Wow.
Rachel Zemach (28:09):
is showing more and more Movies, TV shows,
Broadway plays, and they arebeing directed or written by or
acted by deaf people.
So they're accurate, and that'sfantastic.
And sign language is very sexy.
Hearing people are taking signlanguage in huge numbers, it's
(28:32):
the third most spoken language,used language, studied language
in the country.
it only comes after Spanish andFrench, I believe.
And There are a lot of wonderfuldeaf leaders.
There are wonderful deaforganizations.
There's one called LEAD K, andit's focused specifically on
(28:53):
zero to five years old.
Getting those childrenkindergarten ready.
In other words, making sure theyhave a language.
by the time they enterkindergarten.
It's doing very good work.
Deaf people are constantlytrying to fight for what's right
for their children.
And for strangers' children.
There's a lot of passion.
That's the good.
(29:13):
Here's the bad news.
From a deaf point of view, frommy point of view, things are
almost getting worse.
Because as cochlear implants getmore and more popular.
And the more other people think,okay, well that must be right.
They don't look at, why are deafpeople so skeptical?
Why are they so urgently tryingto warn us not to think that
(29:37):
way?
The medical profession isgetting very rich off cochlear
implants.
I believe it's 90, 000 for thesurgery and the services, the
follow up services.
Audiology visits, speechtherapy, etc.
comes to 90, 000 average
Elizabeth (29:56):
Wow.
Per
Rachel Zemach (29:57):
side.Ideite.
Elizabeth (29:58):
As a parent, especially with a little baby
you start just taking advicefrom a doctor you don't know any
better you've never been in thisposition before you're going to
take the advice from the quoteunquote expert.
Expert.
who is the doctor telling youwhat to do?
So you use the word conundrumbefore.
I think that really is achallenge to say, no, I'm not
going to do this.
(30:18):
Cause every parent wants to dowhat's best for their child.
And if this is what you're beingtold is best for your child,
you're probably going to do it.
Rachel Zemach (30:25):
Yeah, exactly.
My advice to those parents is totalk to Deaf people, get to know
the Deaf community, startreading what Deaf people think,
Deaf leaders think.
Also, listen to the medicalpeople, but really do your
homework.
Look
Elizabeth (30:42):
So
Rachel Zemach (30:42):
sides of cochlear implants, the pros and the cons.
And, learn sign language.
Because, if you learn it, anduse it, even if you're not super
fluent yet, your child will geta language and you will have a
language to communicate withyour child with for the rest of
your lives together.
Elizabeth (31:03):
I wanted to ask a little about your book.
It's such an accomplishment towrite a book, so
congratulations.
How did you keep going?
Maybe some of it was yourwriting group, but I think it
just takes a lot of commitmentand perseverance.
So what kind of got you throughthe tough times that I think
every author seems to confrontwhen they're, writing a book.
Rachel Zemach (31:25):
a huge undertaking.
It took me five years to writeit, two years to find a
publisher, and incrediblycompetitive out there, and the
gatekeepers the agents and thepublishers are hearing.
So, they don't understand theissues.
And they didn't understand theneed for this book.
(31:46):
And they made all kinds ofassumptions about the book.
However, I was really determinedand passionate about it, because
my job teaching deaf childrenshowed me how important it was,
and I loved the kids and I lovedteaching.
And the children were reallywonderful.
They were really extraordinary,smart, kind people, and their
(32:11):
parents were too.
The administration where Itaught was very difficult.
And they had a mindset that madeDeaf 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.
(32:31):
I couldn't take it anymore.
It was a hostile workenvironment and it finally wore
me down, but I didn't want thatto be the end of it.
I wanted to do something withthe experience and what I had
seen, what I had been throughand what I had learned, try to
do something to improve thingsand I left and went to teach at
(32:53):
a deaf school, a very differentenvironment, and very wonderful
Something happened to one of myformer students who had stayed
in the public school system.
it was quite devastating andmade me more determined.
And then I found out I haveStage four cancer.
So that made me realize that Ican't waste any time here at
(33:14):
all.
So all these things put togethermade me retire early and get
busy and not let anything stopme.
Elizabeth (33:23):
How are you feeling?
Are you in recovery?
Rachel Zemach (33:26):
There isn't any recovery, but I'm happy I got
the book done.
I'm relieved, and I'm relievedit got published, and I'm
relieved that it's out there,and people are beginning to know
about it.
Elizabeth (33:39):
It's received amazing reviews.
I wanted to get, some advicefrom you on ways that hearing
people can help advocate for thedeaf community.
And also some words or behaviorsthat maybe people should avoid
when meeting or talking to deafpeople.
Rachel Zemach (33:56):
Okay.
That's a great opportunity forme.
Thank you.
Words to avoid are hearingimpaired.
I know that I used that in thisinterview, so I'm a hypocrite
but it's best to avoid it.
It's considered offensive.
Hearing people think that it's akind word because they're trying
to avoid the word deaf.
But deaf people think that it'san insulting term.
(34:19):
And the word deaf is a positive.
Elizabeth (34:21):
Good to know.
Rachel Zemach (34:22):
Yeah.
In addition to hearing impairedof 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 Iwent to recently and she said, I
have a client whose parents aredeaf and dumb.
I said, please don't use theword dumb.
And she said, well, that's whathe told me, that his parents are
(34:44):
deaf and dumb.
She wanted to argue with meabout it.
When I was trying to give her atip.
Elizabeth (34:50):
Amazing.
Rachel Zemach (34:51):
Other words not to use are, well, this one's a
little tricky, but I'll simplifyit.
The word hard of hearing, again,hearing people often assume that
hard of hearing is better thandeaf.
And they also assume that theycan make a judgment on who is
hard of hearing and who is deaf.
But really, it's a matter ofwhat you identify as.
(35:14):
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'mDeaf.
And not only that, but I'm Deafwith a capital D.
That's another issue islowercase and uppercase D.
I won't get into that, but I'llsay trust the person to know
(35:36):
what they need in terms ofcommunication, what their
identity is, respect them enoughto follow what they say rather
than putting your ownassumptions 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.
(35:56):
I beg you.
Don't do what almost everybodydoes.
Don't speak to them and say, Oh,but you can lip read, right?
Because what you're reallysaying without meaning to is I'm
going to put the burden ofcommunication on your shoulders
a hundred percent because I knowthat some people can lip read.
I've heard of it.
(36:17):
So, you can lipread.
Don't do that.
Write it down.
Write it down.
How can I best communicate withyou?
And give it to them.
And they might say, oh, hey,just talk to me.
I'll lipread.
Okay.
But you ask.
Elizabeth (36:31):
But don't assume that.
Rachel Zemach (36:32):
Right.
And they might say, do you knowsign language?
Or they might say, keep writing.
Or they might say, let's use thephone for a voice to text app.
Just talk into your phone andshow me the captions.
But respect them enough to ask.
And if they ask foraccommodations, if they say,
(36:53):
hey, I'm deaf, I want to come tothis 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 yourown interpreter.
Just ask them, can you give meany more information?
Or Google it.
And see if they have a legalright to have an interpreter in
(37:15):
your environment.
And then say, I'll work on it.
Don't shut it down withoutreally knowing where they're
coming from or what their legalrights are.
I would also say, When you findout that somebody has a hearing
issue or a deaf child, don'tstart pushing cochlear implants
on them.
(37:35):
So everything you talk to themabout, keep in mind that they
are the experts of their lifeexperience.
It doesn't matter what you haveseen on TV, or what your
grandmother was like, or, thatyou had a deaf child in your
class 20 years ago.
No, they're an individual.
Elizabeth (37:55):
Thank you.
That's really wonderful advice.
Everyone is an individual withindividual needs.
Rachel Zemach (38:00):
Yeah.
Elizabeth (38:01):
Thank you for all of your stories and sharing your
experiences and I wish you goodhealth and please keep writing.
Rachel Zemach (38:09):
Thank you.
Thank you so much for letting mebe on this show.
It's a real pleasure.
I consider it a real gift to getto meet lovely people like
Rachel who teach me so much insuch a relatively short amount
of time.
Here are some of my takeawaysfrom our conversation.
Number one (38:26):
Humans can be remarkably adaptable.
Rachel's life changeddramatically at age 10 and yet
she adjusted quickly and nowconsiders her deafness a great
gift.
Two, find your community andappreciate its strengths.
Rachel rattled off support,knowledge, camaraderie, humor,
solutions, coping skills,politics, passion about the deaf
(38:47):
community just off the top ofher head, which was super
inspiring to me.
When faced with a medical issue,do your homework, get second
opinions, and talk to thosedealing with the issue itself.
Don't just rely on the advice ofone person, even if that person
is a professional.
Four (39:02):
Be intentional about how you communicate with Deaf
people.
Don't assume they can lipread orput the burden of communication
fully on their shoulders.
And finally, number five (39:10):
this may sound simple, but it's
always worth repeating.
Be considerate of other people.
There are so many things we takefor granted each day that are
challenging for someone else.
I'm so grateful to Rachel Zemachfor being part of my podcast.
If you'd like to learn moreabout Rachel and her book, The
Butterfly Cage, check out theshow notes for this episode.
if you like listening tointerviews with people who've
(39:32):
dealt with adversity and comeout with some amazing
perspectives, you might want tolisten to episode 58 with Terry
Tucker, who's one of the mostuplifting and inspirational
people I've ever met whiledealing with a serious illness.
And episode 13, when KarenPeterson shared about her
alcoholism, treatment andrecovery.
If you haven't yet subscribed tothis podcast, please do, and
(39:53):
please tell a few friends aboutit too.
I'm Elizabeth Pearson Garr.
Thanks for being curious aboutwhat it's like.
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