Episode Five: I Matter: Discovering Self Advocacy Through My CODA Experience.

In this episode I give a glimpse of what it was like to grow up in my 1980’s CODA world. As an advocate and protector of my parents, I had to find my voice, advocate for myself and learn who I was outside of being a helper. If you are a CODA, a caregiver, or a parent, this episode will help you realize it is okay to have needs. You are heard and known. You matter. 

Episode Transcript

Unknown (00:15):
Welcome to and then it's a podcast where we look at
what comes after a tough seasonor a struggle in life. My name
is Susie Chafin. I'm a CODA, anauthor, a business owner and a
coach. What I am most passionateabout is helping people
transition from struggle andstriving to absolutely thriving.
I'm about five episodes now andto my podcast. And as a side

(00:38):
note, if you do enjoy today'sepisode or a previous one, it
would mean the absolute world tome for you to leave a review, or
to subscribe. That just reallyhelps get the word out there. So
I appreciate any of you who havedone that already.
Today, I'm going personal. I'mgoing to give you a window into
the 1980s kodo world I grew upin. And Coda that's probably not

(01:04):
a word you're familiar with.
You're like what the heck is acoda? And it stands for a child
of a deaf adult. You may haveheard of the word Kota from the
2021 Best Picture Academy Awardwinning movie named Kota. I was
much like the main character,Ruby and the movie Kota except I
couldn't say I wish I could. Myparents didn't work on a boat.

(01:30):
And it was it was the 1980s Wecertainly did not have anywhere
close to the technology that isavailable and accessible today.
And it was a different world. Weweren't living under the ADA act
either. But much like Ruby, Ihad to learn the lessons of self
protection and self advocacy.
And if you're a CODA, or acaregiver, or someone who has

(01:53):
trouble saying no a peoplepleaser, this episode is for you
is going to help you find yourvoice. Learn to protect yourself
and advocate for yourself.
Did you know that the Deaf havea superpower? That may sound
really shocking to you? LikeWait, what? How can they have a

(02:14):
superpower? What do you mean?
Before I dive into that, I'mgonna give you a little bit of
history of what it looked like alittle snapshot into the world
that my sister and I grew up in.
We grew up in the home of twoprofoundly deaf parents. ASL is
our second or first language I'mnot really sure which came
first. And ASL stands forAmerican Sign Language. And as a

(02:35):
young child, I felt like I wasgrowing up in a ruse. If you
guys remember the show candidcamera where they would play a
joke on somebody and then peoplewould jump out with the cameras
and everybody would laugh and itwould was such a good time.
Well, that's what I thought Iwas living in was almost like
this prolonged episode of candidcare part one home small. I

(02:59):
remember, like thinking, this isjust a joke. This is just a
social experiment of sorts. Andsomeday that cameras just gonna
jump out. And we'll pass thetest. And we can laugh. And we
can just see what a what a greatjoke it had been.
And so I tested my theory. And Iremember walking up to my dad,

(03:22):
he would sit in his chair infront of the television,
watching his sports veryintensely. And I remember slowly
creeping up on him and screaminghis blood curdling scream as
loud as I possibly could. I wassure that there was going to be
some kind of reaction, butTwitch a jump. Maybe he'd even

(03:46):
turn around and say, oh, youknow, you caught me, Susie. But
instead, he stared straight intothe screen. And there was not
even the slightest movement, orthe slightest flinch.
And I remember feeling in thatmoment like this, this isn't a
joke. My parents really, reallycan't hear me. And for some

(04:10):
reason, I desperately wanted tobe heard. I wanted not just for
them to know what I soundedlike, you know, hearing my voice
was really the most minimal ofthe that aspect. I as I grew up,
really diving into all kinds ofdifferent things from, you know,

(04:30):
acting classes to debate andcheer and public speaking
different types of things. I hadan aching desire for my parents
to really hear me to actuallyknow me to know who I was.
And I would guess that a lot ofyou feel like that you feel like
that. Like sometimes you justdon't feel known.

(04:52):
You don't feel heard?
I knew who my parents were Iheard all of their stories and
what felt like and it is a verydifficult life, I'm not even
going to try to, to say that myexperience includes to theirs in
any way. They grow up in a verydifficult circumstance. And they

(05:13):
were excluded over and over,they will pass over positions
for their handicap.
And as a child of a deaf adult,my parents definitely knew me as
someone who would help, I wouldalways come and help when I was
summoned. But I was also kindof, for their description, a
pretty difficult child, I had atemper. And sometimes they found

(05:35):
me really exhausting andchallenging. And I believe that
came out of my my desire, thatinnate desire to be known and
heard. And they knew that sideof me, they knew that stubborn
feisty side of me, but the restof me, like my dreams and my
aspirations, what made me tick,what, what I was proud about,

(05:56):
you know, those things were werevery much largely unknown.
Because they couldn't hear mysister and I were immersed into
adult like roles from a very,very early age. We communicated
with adults, way more than weever communicated with peers,
anything from going to arestaurant placing orders on

(06:17):
their behalf.
Any kind of issue with a bill oranything we were the ones did
make the phone call, wetranslated the car deals. We
even translated parent teachermeetings, they didn't let me
tell you that that was super,super fun, especially in high
school when my 10th gradeteacher looks at me and expects

(06:37):
me to tell my mother that she'sjust not really sure I'm honors
material. I'm like, really,really, really, this is Brooks,
do you think I'm going totranslate that? I'm pretty sure
I did. But still was like,but we navigated sales
solicitors, everything from youknow, the rainbow vacuum
cleaners to home siding, topainting to roofing to, you

(06:59):
know, anything that would youcome by and knock on your door
back on those on that day. Wewere quite literally Google, the
internet. We were their versionof the internet, quite
literally. But those are topicsfor a different day. I'm kind of
digressing from the superpower.
As a hearing parent myself,wherever I am. And whatever I am

(07:23):
doing, I have constant clues ofwhat my children are doing. And
if you're hearing parents, it'sthe same for you. You hear the
pitter patter of the feet goingup and down the stairs, you hear
when a conversation betweensiblings has gone from a
conversation to escalating intoan intense argument, possibly

(07:43):
even some violence, right?
I can hear their conversationswith their friends in the
laughter I can hear them kickthe soccer ball outside, I'm
always in tune to what's goingon. And I'm so grateful for that
such a gift of being able tohear it is really such a gift.
The flip sideis I could also hear the begging

(08:04):
and the pleading and theinflection and the sadness and
the grief and the begging andthe begging and begging. And
like all hearing parents like Ican totally be worn down. Is
that incessant? Please, Mama,please, please, you know, you
guys feel me there. I havebroken down I admitted I've

(08:27):
caved I do not have thesuperpower of begging immunity.
without hearinga parent can decide when to pop
in and pop out of our worlds.
They didn't have that peripheralbackground noise. Unless my
mother had her eyes on us. Wewere you know out of mind just

(08:51):
because she couldn't hear usright. And sometimes, myself
more than my sister admittedly,like I mentioned can be pretty
difficult. I wanted to be likemy peers. I wanted to have the
cool guests jeans. I wanted tohave the latest video game. And
high school I was I wanted sodesperately a car. That was just

(09:13):
normal. That wasn't the mostembarrassing thing ever to
drive. So I honed my bakingskills and you're probably going
well how in the world can youbeg someone who can't hear? Oh
boy, let me tell you we couldstill beg through sign. So we
would or me specifically I wouldsay mom which means pressing

(09:38):
basically it's like a numberfive position with your thumb
touching your chin and a veryover and over and of course as I
was saying it which is go fasterand faster. So it was like Mom,
mom, Mama Mama Mama mom, likelisten to me mom. And whatever
it was from like I said theguest jeans are the

(10:00):
Whatever the Tauri it wasusually met with a no.
And she had no idea how much Ineeded those things right. So I
would emphatically sign please,which is essentially taking the
palm of your hand and rubbing itaround in a circular
counterclockwise direction onyour chest. And I would say I

(10:23):
would have the most sorrowfulface ever, Please, mom. And at
any given moment now, this iswhen the superpower would kick
in, she would get the look inher eyes. And she would say, No,
very emphatically sign it andsay it. And then she would say,
period, which essentially meantputting her index finger and

(10:47):
thumb together and punctuatingthe air. So she were literally
putting a period in the air, andit was very emphatic. And I
would try again, but But Mom,mom, mom, mom, please. And this
is when the superpower reallyelevated to next level, she
would close her eyes, she wouldcompletely shut me out.

(11:15):
Great for her. I mean, she nolonger heard me and no longer
was bothered, she had completelyremoved herself from my world.
For me, not so great. The onlyway to be heard through her is
from her looking at me seeing methrough her eyes. And so when
she closed her eyes, shecouldn't hear me and I would get

(11:36):
so frustrated. And I kind ofembarrassed to admit that I
would resort to things liketugging on her clothes, tapping
her arm. I even daresay therewas probably a time or two, I
basically tried to pry her eyesopen. So she would look at me.
But yes, that is definitelygoing too far.

(12:00):
Now thoroughly enraged, shewould look at me and extra
emphatically say I said, No.
Period. And the discussion wasover. Her superpower had fully
kicked in. She was immune tobegging.
I'm about to bring up the topicof privilege. And yeah, I know

(12:23):
it's kind of a hot topic rightnow, especially around certain
types of privilege. And I'm notdiving into that topic. This is
not a political discussion atall. Privilege extends far
beyond races and socio economicgroups. Privilege can be a
blessing and privilege can be acurse, and I'm sure that we've
all seen the curse of too muchprivilege. Too much privilege

(12:46):
can rob a person of life lessonsand challenges and can rob them
of the ability to learn how tofind solutions and and learn
what they're capable of on theirown. And too little privilege
usually results in twoscenarios. Either somebody
results as a emerges as afighter who binds away and find

(13:07):
solutions, or somebody emergesas a victim, and someone who is
lives in that victim mindset.
And really, the outcome ispretty individual.
Growing up, I was acutely awareof hearing privilege, I knew I
had it. And if you are listeningto this, you have hearing
privilege too. And I wascompletely aware of what a gift

(13:29):
it was to hear howso many things were opened up to
us because of my hearing. And Ihad a duty to my parents and I
had a duty to my deaf community.
And growing up as a coda is sofull of so many different
complexities and nuances. Buttoday I want to address

(13:49):
specifically what I learned fromnot having the privilege of
hearing parents. And I'm notmaking a political statement
with that we all benefit withsome kind of privilege, whether
we're hearing whether we'resighted whatever it is.
And some people have theprivilege of having hearing
parents. I grew up navigatingtwo worlds, the world of the

(14:10):
hearing and the world of thedeaf and I never felt at home in
either and the deaf world. I waspart of the culture. But I was
also hearing which also camewith all of the rights and
privileges there up like anycoda, because you can hear you
become responsible for not justyour deaf parents, but for any

(14:32):
deaf anytime. You are theiradvocate, you are their voice
you are their protector. And theflip side to that is that since
you are assigned the protectorrole, by default, no one is your
protector.
And I had fantastic parents whoworked extremely hard their

(14:54):
whole lives and they offered methe best life they possibly
could. They just saidDidn't know certain things or
how to advocate because justthey weren't aware, it wasn't
because they didn't choose to,while I was fortunate enough to
have a grandmother and a sisterwho could, and did listen and
advocate when they could, youknow, that's a different role in

(15:14):
the parental role, and they hadtheir own lives as they should
have had. And the role of beingthe parental advocate is not one
to really be substituted. And Ilearned is, especially as my
sister grew up, and moved out ofthe house and moved, you know,
out of the country, and startedher own life. And as my
grandmother began to age, thatwhatever life I was gonna have,

(15:36):
I was responsible for it 100%,and I needed to stand up for
myself, and I needed to makedecisions that were for me. And
I am so grateful for my uniquecode of life. Because without
this journey that I had, I wouldnever be the person I am today.
And I'll be, at times, mystruggles, didn't quite feel I

(15:58):
guess, you probably have some ofthose too, right? Where you're
like, This really made mebetter, but it was not fun going
through it. Those were the typesof gifts that shaped me into the
person I am today.
So what's the lesson of all thatI shared? And what's the Andean
moment here? The lesson I'mgoing to dive into today is

(16:18):
really about that gift of selfprotection and self advocacy and
finding your voice. I made a lotof errors. And I did not stand
up for myself in many ways overthe years. So here's some
shortcuts. If especially ifyou're a CODA, or especially if
you find yourself in a caregiverrole.

(16:39):
Of course, there is analternative to not advocating
for yourself, you can choose tolive in an other centered world
and not put yourself first, andyou're going to end up like the
person who on the airplane, putsthe oxygen masks on the
passenger before they put themon themselves, great for the
passenger, it's not great if youdon't have the sustenance to

(17:00):
make it yourself. If you don'tlearn to self advocate and self
protect, you're gonna burn out,you're gonna find yourself
depressed, you're find yourselfnot knowing who you are, and not
knowing what it is that youwant. And you're going to lose
that very unique contribution tothis world that only you can

(17:20):
give.
So there, here's some threesimple takeaways for self
advocacy and to making sure youwere advocating for yourself.
The first is to know your needs.
I know it seems counterintuitive is if you've been in a
role where you're serving otherpeople, it's like wait, their
needs are so much more importantthan my needs. And for me, my

(17:44):
needs were always secondary tomy parents needs. And it took me
years to understand that it wasnot only normal to have needs,
but it was healthy to haveneeds. And knowing that I could
have a yes and a no, wow, thatwas huge. I have a trigger
phrase from childhood. Fromanywhere in the house, my

(18:06):
parents would holler, Susie, Ineed you to. And that meant I
was immediately to report toduty, I was summoned. Regardless
of what I was doing in themoment, it didn't matter if I
was doing homework. If I wasreading a book, if I was on the
phone, I didn't matter what Iwas doing. As soon as my parents

(18:27):
would holler at me and summonme, I had to drop whatever I was
doing and immediately report toduty. And that phrase, I need
you to that's the trigger phrasefor me. Like when somebody says
that, to me, I'm like, you know,it took me a long term time to
learn to say, like, Okay, I willhelp you when I can. But first,

(18:50):
I need.
And I did have needs, and youhave needs, and it's okay to
have needs. It's okay to haveneeds that come first, before
you help other people with theirneeds, your help, and your
physical mental needs shouldalways be the priority. If
you're not in tune with yourneeds, you're not going to be
able to voice them, much lessput them first. And if you are

(19:14):
in a role where you areconstantly putting other
people's needs ahead ofyourself, whether it's a parent,
a caregiver, a quota, whateverit is, it's going to take some
figuring out, it's going to takesome time to intentionally list
your needs to see what thoseare. And we're maybe it might
take us a meditation to see whatit is that you exactly want out

(19:35):
of life. What do you wantoutside of serving other people
all the time. And at first, it'sgoing to feel really selfish,
and it's going to feel reallyself absorbed. And it's going to
feel completely unnatural tothink of yourself first. But
with some practice, and whenyou're focused on what it is
that you need. It's going to beharder and harder for you to put

(19:57):
yourself on the backburner andit's more than that.
You have needs, it's okay tohave those needs.
The second takeaway,you are not an extension of
someone else. Let me say thatagain, you are not an extension
of someone else. And when you'rein a role of caregiver or parent

(20:18):
even or whatever it is,sometimes it just feels like
you're part you're an extensionof someone else, and that you
don't really have your ownidentity. And I want to tell
you, you are you, you may havechildren, and you may have
parents, and you may have lovedones or somebody who's sick, who

(20:39):
depends on you. But you are notconnected. And you can't control
their actions. They can'tcontrol your actions, and you
are not responsible for them.
Yes, you can help. Yes, you canprovide assistance. But you are
not required to it's a choice.
Choosing to help. And doingsomething out of obligation,

(21:03):
feeling like you have no choicein the matter are two entirely
different ways to live, realizethat you have a choice, and that
you're not responsible for theiroutcomes.
Last, I want to tell you, to theperson who feels unheard, and

(21:24):
unknown, that you are known, youare known, and you are worthy.
And you are not about justsupplying other people's needs,
you have gifts and abilities.
And in my own personal case,because of this complex
relationship with my parents,and I felt like my parents, a
protector and advocate, Iyearned for a person, a parent,

(21:48):
to advocate for me to know me toknow my gifts to encourage me to
hear me do something and say,you know, great job. And I don't
know what your hurts are. But weall have them places and people
that have fallen shortexpectations that weren't met.
But I want you to know that youhave a creator who knows you,

(22:11):
who created you, Who knew everyhard and beautiful thing you
would encounter and prepared youand prepared the path for it.
And I know that that path can bebumpy and it can be hard but it
can also be so beautiful at thesame time.

(22:32):
And Psalms 139 It says you havesearched me Lord, and you know
me, you know me. You know when Isit and when I rise. You
perceive my thoughts from afar.
You discern my going out and mylying down? You're familiar with
all my ways. Before word is onmy tongue you Lord know it

(22:55):
completely. You him me in behindand before and you lay your hand
upon me. It's that beautiful, sobeautiful. You are known, you
are loved, and you matterimmensely.

(23:19):
If today's episode resonatedwith you, I would love to hear
your takeaways or comments.
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