March 4, 2022 • 29 mins
A team of disability advocates creates True Tales to give voice to the personal stories and lived experiences of disabled storytellers. We offer our unique, often underrepresented perspective, to the growing community of podcast listeners worldwide.
This episode is being released in March, in honor of Women’s History Month. We welcome back Kristen Gooch, the storyteller from episode 2, as host. She is joined by our two storytellers, producer, and sound engineer who are all powerful women with disabilities.
According to the CDC, one in four Americans lives with some kind of disability. That’s about 61 million adults with 61 million experiences and points of view about what it means to live with a disability. Recognizing that everyone's life is enriched by the inclusion of multiple voices, Art Spark Texas, has been training Disability Advocates as storytellers for over 20 years.
Click here to listen with a full transcript
Host - Kristen Gooch
Kristen Gooch is an actress, poet, and advocate from Austin, Texas with cerebral palsy and uses a wheelchair for mobility. She hopes to broaden her horizons and branch out into film and television someday. She currently facilitates a peer support group through Imagineart called Adapting Sheros for women with mobility disabilities. She is a company member of TILT Performance Group and Paradox Players.
Jourdan Huerta
Jourdan is a performer who loves singing, dancing, and making unique greeting cards. Jourdan is also a huge advocate for mental health. She advocates for people with disabilities and for people that have non-epileptic seizures due to her personal experience with psychogenic non-epileptic seizures. Jourdan has such determination! She recently joined the TILT Performance Group and can’t wait to start her next project and theater journey. Keep it up, Miss Huerta!
Social media links:
Instagram: https://www.instagram.com/greetingsbyj/?hl=en,
https://www.instagram.com/jourdanthetheatregeek,
Facebook: https://m.facebook.com/greetingsbyJ/,
https://www.facebook.com/jourdansyeira
Sharizod Aboii
Sharizod Aboii is a native Austinite who grew up in Pflugerville, Texas. She was born with arthrogryposis, a non-congenital condition that affects 1 in 3,000 live births. She is a graduate of Texas A&M University and is currently working on her MSW at Texas State University. Sharizod hopes to encourage and empower others through their journey in life with her shared experiences.
Social Media Links:
LinkedIn: https://www.linkedin.com/in/sharizod-aboii-0a0b7894/
Email: sharizod@gmail.com
Website: www.sharizods.com
Click here to listen with the full transcript.
For more details about our programs go to Art Spark Texas, True Tales Podcast Page.
Segments of this podcast were read by an automated voice. Inconsistencies in pronunciation and tone may occur.
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Kamand (00:09):
Welcome to The True Tales by Disability Advocates,
authentic voices of people.
thriving with disabilities.
Where individuals use the art ofstorytelling to change the
world.
The True Tales by DisabilityAdvocates Podcast is produced by
Art Spark Texas, SpeakingAdvocates Program.
(00:31):
Keep listening to hear howlife's challenges can spark a
desire to speak out and advocatefor yourselves and others.
MsBoye (00:49):
You are listening to "Girl Power", Episode Five of
True Tales by DisabilityAdvocates.
We're the podcast whereAdvocates harness the power of
storytelling to build communitywith their peers and hope to
develop empathy in others.
True Tales is created by a teamof Disability Advocates to give
(01:09):
voice to the personal storiesand lived experience of disabled
storytellers.
We offer our unique and oftenunderrepresented perspective to
the growing community of podcastlisteners worldwide.
Did you know that according tothe CDC, one in four Americans
live with some kind ofdisability.
That is about 61 million adultswith 61 million experiences and
(01:34):
points of view about what itmeans to live with disability.
And so recognizing thateveryone's life is enriched by
the inclusion of multiplevoices, Art Spark Texas has been
training Disability Advocates asStorytellers for over 20 years.
This episode is being releasedin March in honor of Women's
(01:54):
History Month.
And so we welcome back KristenGooch storyteller from Episode
Two as our host, this time.
And she is joined in thisepisode by two storytellers, a
producer, and a sound engineerwho are all powerful women with
disabilities.
Our first storyteller describesherself as an artist with a
(02:15):
disability and a dream.
She is an entrepreneur runningher own business, an actor, a
singer, and much more.
She seems to have an endlessfountain of creative energy and
in her spare time, she makesbeautiful ASL music videos.
Her story,"My Seizure Journey",is about the impact of a new
(02:35):
diagnosis on her life and herpath towards self-care and
self-acceptance.
Our second storyteller iscommitted to being an advocate
for herself and for others, butshe also challenges the very use
of the term disability ingeneral.
Born and raised in Austin, Texasby parents who successfully
(02:56):
advocated for her since she wasa child.
They always included her in thatfight, which empowered her to
become the Warrior WomanAdvocate she is today.
She brings us a tale about hertriumphant battle against the
blatant ableism of her artprofessor when she was in
college as an undergraduate.
We are so glad you've chosen totake time out of your day to
(03:20):
experience a little taste of our"Girl Power."
Kristen (03:29):
Welcome to The True Tales by Disability Advocates,
the podcast where we change theworld one story at a time.
I'm Kristen Gooch, your host forthis episode.
Our guest Jourdan Huerta andSharizod Aboii share tales using
(03:49):
the art of storytelling to sharetheir stories of how they learn
to live their authentic lives.
Our first guest, Jourdan Huertashares her story,"My Seizure
Journey" about developing P N ES and the many coping strategies
(04:16):
she's learned to help her adaptto her new reality.
Welcome, Jourdan.
Before you share with us, wouldyou please let our listeners
know what led you to TheSpeaking Advocates Program?
Jourdan (04:30):
What led me to The Speaking Advocates Program was
its amazingly talented group ofpanelists I saw at the showcase
a while back.
And I thought, how cool would itbe if I did something like this?
So I did and it was the bestdecision I've ever made.
Kristen (04:46):
Thanks, Jourdan, we're glad you did.
All right, the floor is yours.
Jourdan (05:06):
Hi, my name is Jourdan Huerta and this is my story,"My
Seizure Journey".
In October of 2019, I wasdiagnosed with Psychogenic
Non-epileptic Seizures, known asP N E S.
What I remember most about 2019is that was the year that I was
diagnosed.
(05:26):
I remember back then, I was ableto go places on my own.
I was able to go to the mallwith friends without having to
worry if I was going to have aseizure from the big crowds, or
if I had a phone to call my momif I needed help.
I didn't need any attendance tohelp me go places freely.
I could do things I enjoyed.
But what do I really miss?
(05:47):
Epsom salt baths, swimming,roller coasters, I can't even
have Starbucks coffee because ofthe caffeine content.
I mean, who drinks decaf,coffee?
(laughs) Just kidding! But thisis my new norm.
Not having that independence andbeing faced with having
different attendants with me canbe quite challenging.
(06:09):
Sometimes you just need time toyourself, time to recuperate or
have some personal space.
I tell myself every day,"I canget through this.
Keep being seizure-free.
You can do this.
You got this." But this focuscan also cause another seizure.
Slowly I'm learning differenttechniques to manage my stress.
(06:32):
2021 began better because Istarted focusing more on my
breathing techniques and usingbreathing exercises.
I do meditation and take thevitamins one of my doctors
recommended.
I changed my diet to plant-basedbecause we found out that really
helps with seizures.
And trust me, not havinghamburgers and switching to
(06:52):
veggie patties can be quite achallenge, especially when
you're used to eating meat.
But I'm glad because every day Ipass by these group of goats
that I know will be eatenbecause of these trendy tacos
called Birria Tacos.
(laughs) But seriously, I knowI've had fewer seizures due to
(07:13):
my changed diet.
Meditation also helps, thanks tomy small circle of support I
have in place today.
I have a doctor that specializesin PNES seizures.
I have a mother who is alsovegetarian.
I have friends that I can dependon when I get stressed.
I know now that I am not alone,and that it gets better.
(07:34):
Yes.
I've learned that life isn'talways fair, but life is too
short so I'm going to live it tothe fullest.
Kristen (07:48):
Welcome back, I'm here with Jourdan.
Jourdan, thank you for sharingyour story with us.
I know that losing yourindependence and learning how to
make adaptations, can bedifficult.
To not be able to do what youwant to do and go where you want
to go, or just have time toyourself, that had to be hard
(08:12):
and very challenging.
Also, I can tell that this was avery personal and a very
difficult experience for you.
Walk me through the process,what was it like for you to have
to sit down and just puteverything in writing?
How difficult was that?
Jourdan (08:32):
It was quite a challenge, um, but in the end, I
think overall, it really helpedme.
With Speaking Advocates, youlearn a lot, you know, you go
from, storytelling andstorymaking to Advocacy stories
and it just gets expanded.
That's why we're called SpeakingAdvocates.
Kristen (08:52):
Well put, it had to be very cathartic for you.
Jourdan (08:56):
Yes, very much so.
(laughs)
Kristen (08:59):
Alright, will you please tell our listeners, what
did you take away from thisexperience?
Jourdan (09:06):
What I learned is everyone is working on
something, you know, andeveryone has, needs that they
need to address.
So I'm a true believer intherapy and medicine and eating
well, because you know, Ibelieve that when you eat well,
you feel well.
And that's what I believe in...
so...
Kristen (09:24):
That's wonderful.
What impact do you hope yourstory has on our listeners?
Jourdan (09:31):
That it's okay to be different and that it's okay,
you know, to ask for help andhave people that are available
to help you when you'restruggling and figuring out
things, especially when you havePNES, having that support is
really important.
Kristen (09:46):
Thank you Jourdan so much for joining us today and
giving us a look into yourexperience of adapting to P N E
S.
We look forward to watching yourjourney unfold and to hearing
about your future projects.
If people want to connect withyou, what's the best way to do
(10:07):
that?
Jourdan (10:08):
You can find me on Facebook and Instagram as well
as TikTok at J O U R D A N theAdvocate, or you can also check
out my future projects onFacebook and Instagram
@greetingsbyJ.
Kristen (10:27):
Perfect! Stay with us for our second guest Sharizod
Aboii.
(10:47):
Welcome back to True Tales byDisability Advocates.
Our next guest Sharizod Aboiishares her story,"I sure showed
Miss Puppet." Welcome Sharizod,before you share your story with
us, please tell our listenerswhat led you to The Speaking
(11:07):
Advocates Program?
New Speaker (11:10):
Thank you, Kristen.
I got involved, I believe it wasin 2015.
I can't remember exactly how,but I believe I either was on a
listserv for the organization orI had actually visited the
website.
And I do remember reading someinformation about the Opening
Minds Opening Doors program.
(11:31):
And after reading thedescription, I thought it was a
really interesting program to beable to share, you know, how my
experiences and challenges, howI was able to overcome them and
hopefully help others that maybe dealing with similar
challenges.
With being someone born of aphysical limitation I do know
that, that you know, people seeme differently.
(11:54):
I don't see myself as different,but they see me differently.
And that does lead to, you know,you being treated differently
sometimes.
Um, and so I just thought it wasa really great opportunity to be
able to share my stories.
Kristen (12:08):
Yeah, that's so true.
I know with myself, being born,physically disabled and I don't
see myself any differently, butI do know that oftentimes, yeah,
we get treated differently.
Prior to getting involved withOpening Minds, Opening Doors and
Art Spark were you involved inany kind of advocacy
(12:33):
organization or artsorganization for people with
disabilities?
New Speaker (12:39):
That's a good question, I can't say that I
actually was, um, I did do myown, way of showing what I can
do with my craft shows and myartwork.
So I would use my artwork to,share what I was physically
capable of doing and sort ofinspire others.
And I had actually been inviteda couple of times to local
(13:03):
elementary schools to talk withlittle kids, um, about being
different and your differentabilities.
Kristen (13:11):
That's amazing.
Sharizod (13:12):
Thank you.
Kristen (13:14):
Yeah, and it shows young kids, you know, not to
fear someone with a disability.
All right, well, let's listen toyour story.
I know our listeners are goingto love it.
Sharizod (13:37):
My name is Sharizod Aboii and this is my story.
"I sure showed Miss puppet." Myjunior year of college, I
decided to take an art class.
It had been a while since I hadlast created art.
My other courses lined up thatsemester were challenging.
This class would be equivalentto a summer vacation for my
(14:00):
mind.
The class was in thearchitecture building.
It was a strange building.
It had that professional office,like smell, making anyone who
walked through the doorsautomatically feel like someone
of importance.
I walked in with my head uphigh.
As a natural born artist, ISharizod was in the building.
(14:25):
I felt my excitement grow as theclassroom became closer.
I had never taken an art classin such an important feeling
building before.
Previous art classes taken inmiddle school and high school
were referred to as"simpleelectives", here in this
building people made art acareer.
(14:48):
As I walked into the classroom,the desks were taller than I had
expected.
The scents of charcoal paint andpaper, put a smile on my face.
The Professor walked in quietlyand slowly.
Kid you not, she looked like oneof those puppets from Mr.
Rogers' Neighborhood ofmake-believe.
(15:10):
Oh, and her voice truly gave itaway as being an original puppet
with her high pitched raspyvoice.
Just like all the other firstdays of class, the professor
took time to go over the classexpectations and the syllabus.
At the end of the syllabus wasthe ADA statement stating that
(15:33):
classes should make reasonableaccommodations for those with a
"Disability." Disability?
Me?
Nah...
I have physical limitations, butnot a"Disability" requiring many
accommodations.
At the end of the class.
I noticed the Professor walkingup to me.
(15:56):
Oh yeah, she's probably going toask me what accommodations I
might need.
After all, I look like I have a"Disability" to her.
"Hello! I know of just the rightclass for you." What?
"Oh no, I'm in the right class.""I don't think this class is a
(16:20):
good fit for you.
It's fast paced and will requirethe use of tools that I'm sure
you will have difficulty with."What?
Did I just hear her right?
Was Miss Puppet telling me Icould not take this class?
Didn't she just read the ADAstatement on her syllabus?
(16:43):
She doesn't even know me! I tooka deep breath(sigh) and
explained to her that I wascomfortable with asking for
assistance from my classmates ifneeded.
She responded.
"Your classmates will be toobusy working on their projects
(17:04):
to assist you." I continued toshare with her that I knew of a
classmate in the class.
She was a friend of mine.
In fact, we lived in the samedorm.
We had already discussed thepossibility of my needing her
assistance and she was fine withit.
She responded," Well, we'llsee." Success! So I thought.
(17:33):
At the end of the second class,she came up to me yet again!"So,
I've talked with the otherprofessor about fitting you in
their class.
All you have to do is go to yourcounselor and have your schedule
changed.
Seriously?
(17:54):
Here, I was thinking the stormhad passed, when I was only
looking through the calm eye ofit.
Leaving the class furious, I wasdetermined.
I was not going to take thatother class.
Ready to fight, I headedstraight to the student
disability office.
Miss puppet was in the wrong, ofcourse.
(18:16):
She eventually hired a graduatestudent to"help" me.
Yeah.
She hired him to sit around.
I didn't need him.
He came for about three classesand then stopped
altogethergether.
Oh.
In our first project, we had toturn in, guess whose project was
the quality the professor waslooking for?
(18:39):
That's right.
Mine.
She had everyone turn in theirprojects to the front of the
class.
Of course, she wasn't in, whenwe turned them in, therefore she
had no idea whose projectbelonged to who.
As she strolled down the line ofprojects, paused near mine.
"Now, this here is the quality Iexpect from each and every one
(19:05):
of you.
In fact, it has a lot of thethings I'll be teaching you this
semester." Not wanting to makethe others jealous I kept a
straight face and nodded inagreement with the professor.
On the inside, I was screaming"YES!" And throwing the biggest
(19:28):
private party ever.
I not only showed her I belongedin the class, I was advanced for
this class.
Yep, that's right.
Sharizod wasn't going anywhere.
I sure showed her.
Kristen (19:48):
Wow, what a great story.
I'm so glad our listeners got tohear it and celebrate right
along with you at the end.
Unfortunately, it's not uncommonfor individuals with visible
disabilities or visible, uh,physical limitations to be
(20:09):
underestimated.
That professor who knew nothingabout you, would already jump to
the conclusion that you didn'tbelong in her class! tuts)
That's terrible.
So what was the rest of thesemester like with Miss puppet?
Sharizod (20:29):
Well, I was actually able to stay in the class.
I did all of the projects and Ifound out later that, she rarely
would give A's.
She was a tough professor, shewas very harsh on everybody.
Um, but I do remember, justhaving to go up to her the last
day of class and face her andjust say," So how do you think I
(20:52):
did in your class?" And, I justremember her giving me this
smirk and sort of like a smileas well and she had to admit
that I did a really great job.
So yeah, I ended up with an A,and I proved her wrong.
Kristen (21:06):
Congratulations!
Sharizod (21:08):
Thank you.
Kristen (21:09):
So, I hate to ask this, but, looking back, would you
have handled it differently?
Sharizod (21:17):
laughs) Uh, probably not, to be honest.
I think sometimes people thinkthey can get away with doing
things and they expect us to notreact and just sort of take it.
So you know, not only was Ireally standing up for myself,
but I really felt like I wasstanding up for anybody else
that might've been in that samesituation.
(21:37):
I think it really has to do withhow I was brought up.
I had my parents as an examplethroughout my entire life.
Seeing how they would have tostand up for me, um, as a young
child.
They had to go through asituation where the school
district wanting to put me in aspecial education class.
(22:01):
And they had to stand up andsay,"No, she's going to be in a
regular class like everybodyelse.
She's going to be given the sameopportunity as everybody else."
Um, and I don't think they, Idon't remember them ever doing
these fights, like in secret.
It was something I was alwaysinvolved with and seeing how
they approach the situation.
So my parents, they never, youknow, blew up and create a
(22:23):
ruckus.
They knew how to communicate inan effective and efficient way
to get the point across and toactually make changes.
What was really interestingabout this professor is I found
that later that she had her ownlimitations.
So I was really puzzled as towhy she was giving me such a
hard time when she herself hadher own challenges and she knew
(22:46):
what it was like,
Kristen (22:48):
Sounds like internalized ableism to me.
Sharizod (22:51):
Probably..
Kristen (22:53):
But anyway, that's neither here nor there.
What advice would you give toanyone, a student, who's, being,
you know, underestimated by aprofessor or a coworker/
employer, what advice would yougive them if they were going
through similar situation?
Sharizod (23:13):
Don't be afraid to stand up for yourself, to voice
what you are feeling, whatyou're experiencing.
I think in our society, it'svery easy for it to feel like
you are making a big deal out ofsomething and it's only you that
is experiencing this and thatyou're making it up and that is
(23:36):
not true.
Um, so anytime you feel likesomething is not going right,
and that you are not beingtreated fairly, speak up, don't
be afraid to.
And, um, don't be afraid to makea ruckus.
Kristen (23:51):
Sure.
So that experience happened toyou several years ago, now I
want to know how has your lifechanged since then?
And what's your latest projector adventure?
Sharizod (24:06):
Okay.
Well, um, I definitely finishedmy undergraduate.
That was way back in 2009, I gotmy degree, in business.
Currently, you know, I've hadsome working experiences since
then, but currently I am workingon my MSW at Texas State.
You know, in life, I feel likewe have different chapters and
(24:30):
sometimes you don't know exactlywhere you're going.
Um, but you sort of just followthe path that you're given and
the little cookie crumbles, ifyou will.
I feel like that the path I'mcurrently on, I'm hoping that it
will lead me to being able tocontinue to encourage and
empower others with differingabilities.
Kristen (24:49):
You're working on your MSW, have you thought about what
kind of population you want towork with?
Sharizod (24:56):
Um, yes, I, have two main areas of focus.
A lot of my career experienceshave been in healthcare, helping
patients navigate the healthcaresystem.
Whether that's navigatingitself, like where to go, who to
talk to, but also providing themwith information where they feel
empowered over their treatmentchoices and their options,
(25:20):
asking questions, like what typeof questions to ask.
Again, being an advocate forthemselves and understanding,
you know, what their options arethat they do have a choice.
So that's definitely one areaand of course my ultimate love
is just, again, showing thatthere really needs to be some
changes for people, um, who areliving life with limitations.
(25:45):
I think advocacy for peoplewith....
And I like to honestly like tosay limitations over disability,
to me, disability means you'renot able to work.
I think limitations for me, it'sa way of saying that yeah, I
might work in a different way.
I'm not necessarily able to dothe same things in the same way
other people are, but I do it inmy own way.
(26:06):
Um, and so, those are, those aremy two areas, healthcare and
disability advocacy.
I think there's so much outthere that needs to be changed.
I think people's views need tobe changed.
We are people that have amazingtalents.
We've been given the challengein life to do life as everybody
(26:29):
else, along with the challengeswe've been given.
Uh, so I feel like we do life,if you will, a better in a, not
necessarily better way, butwe're able to overcome things
that I think people, if theywere given the same challenges
may not have been successfulwith.
So I do hope that whatever I doin life, even with my MSW that
(26:55):
I, that I'm able to make adifference for others.
Kristen (26:59):
Very eloquently put.
Well, I know you will be amazingand your future clients will be
lucky to have you.
Sharizod (27:08):
Thank you.
Kristen (27:09):
Sharizod, thank you so much for joining us today and
giving us a look into yourexperience.
We would love for you to comeback and share more about your
journey with disabilityadvocacy.
And if people want to connectwith you, what's the best way to
do that?
Sharizod (27:28):
Um, I would say probably by email, which is
really the simplest email,because my name is already
pretty challenging.
So if you have my first name,which is Sharizod spelled S as
in Sam, H-A as in apple, R-I-Zas in zebra, O-D as in David,
@gmail.com.
Kristen (27:50):
Perfect.
Thanks for listening to thisepisode.
Our show is hosted by me.
Kristen Gooch produced byJennifer Howell, edited and
mixed by Ms.Boye.
Our script and production teamincludes Joey Gidseg, John Beer
(28:14):
and and Toby Al-Trabulsi.
Special thanks to Jourdan Huertaand Sharizod Aboii for being our
guests.
I'm Kristen Gooch and you'vebeen listening to True Tales by
Disability Advocates.
Don't forget to follow us onFacebook, Twitter, and
Instagram.
Kamand (28:37):
All episodes of The True Tales by Disability Advocates
are free on Apple Podcasts,Spotify, and anywhere you get
your podcasts.
The program is funded in part bya grant from the Texas state
Independent Living Council, theAdministration for Community
Living and individuals like you.
To learn about the SpeakingAdvocates Program sign up for
(29:01):
our newsletter at Art SparkTexas dot org.
That's A R T S P A R K T X.org.
This free virtual training isopen to people of all
disabilities, no matter whereyou live.
Welcome to The True Tales by Disability Advocates,
authentic voices of people.
thriving with disabilities.
Where individuals use the art ofstorytelling to change the
world.
The True Tales by DisabilityAdvocates Podcast is produced by
Art Spark Texas, SpeakingAdvocates Program.
(00:31):
Keep listening to hear howlife's challenges can spark a
desire to speak out and advocatefor yourselves and others.
MsBoye (00:49):
You are listening to "Girl Power", Episode Five of
True Tales by DisabilityAdvocates.
We're the podcast whereAdvocates harness the power of
storytelling to build communitywith their peers and hope to
develop empathy in others.
True Tales is created by a teamof Disability Advocates to give
(01:09):
voice to the personal storiesand lived experience of disabled
storytellers.
We offer our unique and oftenunderrepresented perspective to
the growing community of podcastlisteners worldwide.
Did you know that according tothe CDC, one in four Americans
live with some kind ofdisability.
That is about 61 million adultswith 61 million experiences and
(01:34):
points of view about what itmeans to live with disability.
And so recognizing thateveryone's life is enriched by
the inclusion of multiplevoices, Art Spark Texas has been
training Disability Advocates asStorytellers for over 20 years.
This episode is being releasedin March in honor of Women's
(01:54):
History Month.
And so we welcome back KristenGooch storyteller from Episode
Two as our host, this time.
And she is joined in thisepisode by two storytellers, a
producer, and a sound engineerwho are all powerful women with
disabilities.
Our first storyteller describesherself as an artist with a
(02:15):
disability and a dream.
She is an entrepreneur runningher own business, an actor, a
singer, and much more.
She seems to have an endlessfountain of creative energy and
in her spare time, she makesbeautiful ASL music videos.
Her story,"My Seizure Journey",is about the impact of a new
(02:35):
diagnosis on her life and herpath towards self-care and
self-acceptance.
Our second storyteller iscommitted to being an advocate
for herself and for others, butshe also challenges the very use
of the term disability ingeneral.
Born and raised in Austin, Texasby parents who successfully
(02:56):
advocated for her since she wasa child.
They always included her in thatfight, which empowered her to
become the Warrior WomanAdvocate she is today.
She brings us a tale about hertriumphant battle against the
blatant ableism of her artprofessor when she was in
college as an undergraduate.
We are so glad you've chosen totake time out of your day to
(03:20):
experience a little taste of our"Girl Power."
Kristen (03:29):
Welcome to The True Tales by Disability Advocates,
the podcast where we change theworld one story at a time.
I'm Kristen Gooch, your host forthis episode.
Our guest Jourdan Huerta andSharizod Aboii share tales using
(03:49):
the art of storytelling to sharetheir stories of how they learn
to live their authentic lives.
Our first guest, Jourdan Huertashares her story,"My Seizure
Journey" about developing P N ES and the many coping strategies
(04:16):
she's learned to help her adaptto her new reality.
Welcome, Jourdan.
Before you share with us, wouldyou please let our listeners
know what led you to TheSpeaking Advocates Program?
Jourdan (04:30):
What led me to The Speaking Advocates Program was
its amazingly talented group ofpanelists I saw at the showcase
a while back.
And I thought, how cool would itbe if I did something like this?
So I did and it was the bestdecision I've ever made.
Kristen (04:46):
Thanks, Jourdan, we're glad you did.
All right, the floor is yours.
Jourdan (05:06):
Hi, my name is Jourdan Huerta and this is my story,"My
Seizure Journey".
In October of 2019, I wasdiagnosed with Psychogenic
Non-epileptic Seizures, known asP N E S.
What I remember most about 2019is that was the year that I was
diagnosed.
(05:26):
I remember back then, I was ableto go places on my own.
I was able to go to the mallwith friends without having to
worry if I was going to have aseizure from the big crowds, or
if I had a phone to call my momif I needed help.
I didn't need any attendance tohelp me go places freely.
I could do things I enjoyed.
But what do I really miss?
(05:47):
Epsom salt baths, swimming,roller coasters, I can't even
have Starbucks coffee because ofthe caffeine content.
I mean, who drinks decaf,coffee?
(laughs) Just kidding! But thisis my new norm.
Not having that independence andbeing faced with having
different attendants with me canbe quite challenging.
(06:09):
Sometimes you just need time toyourself, time to recuperate or
have some personal space.
I tell myself every day,"I canget through this.
Keep being seizure-free.
You can do this.
You got this." But this focuscan also cause another seizure.
Slowly I'm learning differenttechniques to manage my stress.
(06:32):
2021 began better because Istarted focusing more on my
breathing techniques and usingbreathing exercises.
I do meditation and take thevitamins one of my doctors
recommended.
I changed my diet to plant-basedbecause we found out that really
helps with seizures.
And trust me, not havinghamburgers and switching to
(06:52):
veggie patties can be quite achallenge, especially when
you're used to eating meat.
But I'm glad because every day Ipass by these group of goats
that I know will be eatenbecause of these trendy tacos
called Birria Tacos.
(laughs) But seriously, I knowI've had fewer seizures due to
(07:13):
my changed diet.
Meditation also helps, thanks tomy small circle of support I
have in place today.
I have a doctor that specializesin PNES seizures.
I have a mother who is alsovegetarian.
I have friends that I can dependon when I get stressed.
I know now that I am not alone,and that it gets better.
(07:34):
Yes.
I've learned that life isn'talways fair, but life is too
short so I'm going to live it tothe fullest.
Kristen (07:48):
Welcome back, I'm here with Jourdan.
Jourdan, thank you for sharingyour story with us.
I know that losing yourindependence and learning how to
make adaptations, can bedifficult.
To not be able to do what youwant to do and go where you want
to go, or just have time toyourself, that had to be hard
(08:12):
and very challenging.
Also, I can tell that this was avery personal and a very
difficult experience for you.
Walk me through the process,what was it like for you to have
to sit down and just puteverything in writing?
How difficult was that?
Jourdan (08:32):
It was quite a challenge, um, but in the end, I
think overall, it really helpedme.
With Speaking Advocates, youlearn a lot, you know, you go
from, storytelling andstorymaking to Advocacy stories
and it just gets expanded.
That's why we're called SpeakingAdvocates.
Kristen (08:52):
Well put, it had to be very cathartic for you.
Jourdan (08:56):
Yes, very much so.
(laughs)
Kristen (08:59):
Alright, will you please tell our listeners, what
did you take away from thisexperience?
Jourdan (09:06):
What I learned is everyone is working on
something, you know, andeveryone has, needs that they
need to address.
So I'm a true believer intherapy and medicine and eating
well, because you know, Ibelieve that when you eat well,
you feel well.
And that's what I believe in...
so...
Kristen (09:24):
That's wonderful.
What impact do you hope yourstory has on our listeners?
Jourdan (09:31):
That it's okay to be different and that it's okay,
you know, to ask for help andhave people that are available
to help you when you'restruggling and figuring out
things, especially when you havePNES, having that support is
really important.
Kristen (09:46):
Thank you Jourdan so much for joining us today and
giving us a look into yourexperience of adapting to P N E
S.
We look forward to watching yourjourney unfold and to hearing
about your future projects.
If people want to connect withyou, what's the best way to do
(10:07):
that?
Jourdan (10:08):
You can find me on Facebook and Instagram as well
as TikTok at J O U R D A N theAdvocate, or you can also check
out my future projects onFacebook and Instagram
@greetingsbyJ.
Kristen (10:27):
Perfect! Stay with us for our second guest Sharizod
Aboii.
(10:47):
Welcome back to True Tales byDisability Advocates.
Our next guest Sharizod Aboiishares her story,"I sure showed
Miss Puppet." Welcome Sharizod,before you share your story with
us, please tell our listenerswhat led you to The Speaking
(11:07):
Advocates Program?
New Speaker (11:10):
Thank you, Kristen.
I got involved, I believe it wasin 2015.
I can't remember exactly how,but I believe I either was on a
listserv for the organization orI had actually visited the
website.
And I do remember reading someinformation about the Opening
Minds Opening Doors program.
(11:31):
And after reading thedescription, I thought it was a
really interesting program to beable to share, you know, how my
experiences and challenges, howI was able to overcome them and
hopefully help others that maybe dealing with similar
challenges.
With being someone born of aphysical limitation I do know
that, that you know, people seeme differently.
(11:54):
I don't see myself as different,but they see me differently.
And that does lead to, you know,you being treated differently
sometimes.
Um, and so I just thought it wasa really great opportunity to be
able to share my stories.
Kristen (12:08):
Yeah, that's so true.
I know with myself, being born,physically disabled and I don't
see myself any differently, butI do know that oftentimes, yeah,
we get treated differently.
Prior to getting involved withOpening Minds, Opening Doors and
Art Spark were you involved inany kind of advocacy
(12:33):
organization or artsorganization for people with
disabilities?
New Speaker (12:39):
That's a good question, I can't say that I
actually was, um, I did do myown, way of showing what I can
do with my craft shows and myartwork.
So I would use my artwork to,share what I was physically
capable of doing and sort ofinspire others.
And I had actually been inviteda couple of times to local
(13:03):
elementary schools to talk withlittle kids, um, about being
different and your differentabilities.
Kristen (13:11):
That's amazing.
Sharizod (13:12):
Thank you.
Kristen (13:14):
Yeah, and it shows young kids, you know, not to
fear someone with a disability.
All right, well, let's listen toyour story.
I know our listeners are goingto love it.
Sharizod (13:37):
My name is Sharizod Aboii and this is my story.
"I sure showed Miss puppet." Myjunior year of college, I
decided to take an art class.
It had been a while since I hadlast created art.
My other courses lined up thatsemester were challenging.
This class would be equivalentto a summer vacation for my
(14:00):
mind.
The class was in thearchitecture building.
It was a strange building.
It had that professional office,like smell, making anyone who
walked through the doorsautomatically feel like someone
of importance.
I walked in with my head uphigh.
As a natural born artist, ISharizod was in the building.
(14:25):
I felt my excitement grow as theclassroom became closer.
I had never taken an art classin such an important feeling
building before.
Previous art classes taken inmiddle school and high school
were referred to as"simpleelectives", here in this
building people made art acareer.
(14:48):
As I walked into the classroom,the desks were taller than I had
expected.
The scents of charcoal paint andpaper, put a smile on my face.
The Professor walked in quietlyand slowly.
Kid you not, she looked like oneof those puppets from Mr.
Rogers' Neighborhood ofmake-believe.
(15:10):
Oh, and her voice truly gave itaway as being an original puppet
with her high pitched raspyvoice.
Just like all the other firstdays of class, the professor
took time to go over the classexpectations and the syllabus.
At the end of the syllabus wasthe ADA statement stating that
(15:33):
classes should make reasonableaccommodations for those with a
"Disability." Disability?
Me?
Nah...
I have physical limitations, butnot a"Disability" requiring many
accommodations.
At the end of the class.
I noticed the Professor walkingup to me.
(15:56):
Oh yeah, she's probably going toask me what accommodations I
might need.
After all, I look like I have a"Disability" to her.
"Hello! I know of just the rightclass for you." What?
"Oh no, I'm in the right class.""I don't think this class is a
(16:20):
good fit for you.
It's fast paced and will requirethe use of tools that I'm sure
you will have difficulty with."What?
Did I just hear her right?
Was Miss Puppet telling me Icould not take this class?
Didn't she just read the ADAstatement on her syllabus?
(16:43):
She doesn't even know me! I tooka deep breath(sigh) and
explained to her that I wascomfortable with asking for
assistance from my classmates ifneeded.
She responded.
"Your classmates will be toobusy working on their projects
(17:04):
to assist you." I continued toshare with her that I knew of a
classmate in the class.
She was a friend of mine.
In fact, we lived in the samedorm.
We had already discussed thepossibility of my needing her
assistance and she was fine withit.
She responded," Well, we'llsee." Success! So I thought.
(17:33):
At the end of the second class,she came up to me yet again!"So,
I've talked with the otherprofessor about fitting you in
their class.
All you have to do is go to yourcounselor and have your schedule
changed.
Seriously?
(17:54):
Here, I was thinking the stormhad passed, when I was only
looking through the calm eye ofit.
Leaving the class furious, I wasdetermined.
I was not going to take thatother class.
Ready to fight, I headedstraight to the student
disability office.
Miss puppet was in the wrong, ofcourse.
(18:16):
She eventually hired a graduatestudent to"help" me.
Yeah.
She hired him to sit around.
I didn't need him.
He came for about three classesand then stopped
altogethergether.
Oh.
In our first project, we had toturn in, guess whose project was
the quality the professor waslooking for?
(18:39):
That's right.
Mine.
She had everyone turn in theirprojects to the front of the
class.
Of course, she wasn't in, whenwe turned them in, therefore she
had no idea whose projectbelonged to who.
As she strolled down the line ofprojects, paused near mine.
"Now, this here is the quality Iexpect from each and every one
(19:05):
of you.
In fact, it has a lot of thethings I'll be teaching you this
semester." Not wanting to makethe others jealous I kept a
straight face and nodded inagreement with the professor.
On the inside, I was screaming"YES!" And throwing the biggest
(19:28):
private party ever.
I not only showed her I belongedin the class, I was advanced for
this class.
Yep, that's right.
Sharizod wasn't going anywhere.
I sure showed her.
Kristen (19:48):
Wow, what a great story.
I'm so glad our listeners got tohear it and celebrate right
along with you at the end.
Unfortunately, it's not uncommonfor individuals with visible
disabilities or visible, uh,physical limitations to be
(20:09):
underestimated.
That professor who knew nothingabout you, would already jump to
the conclusion that you didn'tbelong in her class! tuts)
That's terrible.
So what was the rest of thesemester like with Miss puppet?
Sharizod (20:29):
Well, I was actually able to stay in the class.
I did all of the projects and Ifound out later that, she rarely
would give A's.
She was a tough professor, shewas very harsh on everybody.
Um, but I do remember, justhaving to go up to her the last
day of class and face her andjust say," So how do you think I
(20:52):
did in your class?" And, I justremember her giving me this
smirk and sort of like a smileas well and she had to admit
that I did a really great job.
So yeah, I ended up with an A,and I proved her wrong.
Kristen (21:06):
Congratulations!
Sharizod (21:08):
Thank you.
Kristen (21:09):
So, I hate to ask this, but, looking back, would you
have handled it differently?
Sharizod (21:17):
laughs) Uh, probably not, to be honest.
I think sometimes people thinkthey can get away with doing
things and they expect us to notreact and just sort of take it.
So you know, not only was Ireally standing up for myself,
but I really felt like I wasstanding up for anybody else
that might've been in that samesituation.
(21:37):
I think it really has to do withhow I was brought up.
I had my parents as an examplethroughout my entire life.
Seeing how they would have tostand up for me, um, as a young
child.
They had to go through asituation where the school
district wanting to put me in aspecial education class.
(22:01):
And they had to stand up andsay,"No, she's going to be in a
regular class like everybodyelse.
She's going to be given the sameopportunity as everybody else."
Um, and I don't think they, Idon't remember them ever doing
these fights, like in secret.
It was something I was alwaysinvolved with and seeing how
they approach the situation.
So my parents, they never, youknow, blew up and create a
(22:23):
ruckus.
They knew how to communicate inan effective and efficient way
to get the point across and toactually make changes.
What was really interestingabout this professor is I found
that later that she had her ownlimitations.
So I was really puzzled as towhy she was giving me such a
hard time when she herself hadher own challenges and she knew
(22:46):
what it was like,
Kristen (22:48):
Sounds like internalized ableism to me.
Sharizod (22:51):
Probably..
Kristen (22:53):
But anyway, that's neither here nor there.
What advice would you give toanyone, a student, who's, being,
you know, underestimated by aprofessor or a coworker/
employer, what advice would yougive them if they were going
through similar situation?
Sharizod (23:13):
Don't be afraid to stand up for yourself, to voice
what you are feeling, whatyou're experiencing.
I think in our society, it'svery easy for it to feel like
you are making a big deal out ofsomething and it's only you that
is experiencing this and thatyou're making it up and that is
(23:36):
not true.
Um, so anytime you feel likesomething is not going right,
and that you are not beingtreated fairly, speak up, don't
be afraid to.
And, um, don't be afraid to makea ruckus.
Kristen (23:51):
Sure.
So that experience happened toyou several years ago, now I
want to know how has your lifechanged since then?
And what's your latest projector adventure?
Sharizod (24:06):
Okay.
Well, um, I definitely finishedmy undergraduate.
That was way back in 2009, I gotmy degree, in business.
Currently, you know, I've hadsome working experiences since
then, but currently I am workingon my MSW at Texas State.
You know, in life, I feel likewe have different chapters and
(24:30):
sometimes you don't know exactlywhere you're going.
Um, but you sort of just followthe path that you're given and
the little cookie crumbles, ifyou will.
I feel like that the path I'mcurrently on, I'm hoping that it
will lead me to being able tocontinue to encourage and
empower others with differingabilities.
Kristen (24:49):
You're working on your MSW, have you thought about what
kind of population you want towork with?
Sharizod (24:56):
Um, yes, I, have two main areas of focus.
A lot of my career experienceshave been in healthcare, helping
patients navigate the healthcaresystem.
Whether that's navigatingitself, like where to go, who to
talk to, but also providing themwith information where they feel
empowered over their treatmentchoices and their options,
(25:20):
asking questions, like what typeof questions to ask.
Again, being an advocate forthemselves and understanding,
you know, what their options arethat they do have a choice.
So that's definitely one areaand of course my ultimate love
is just, again, showing thatthere really needs to be some
changes for people, um, who areliving life with limitations.
(25:45):
I think advocacy for peoplewith....
And I like to honestly like tosay limitations over disability,
to me, disability means you'renot able to work.
I think limitations for me, it'sa way of saying that yeah, I
might work in a different way.
I'm not necessarily able to dothe same things in the same way
other people are, but I do it inmy own way.
(26:06):
Um, and so, those are, those aremy two areas, healthcare and
disability advocacy.
I think there's so much outthere that needs to be changed.
I think people's views need tobe changed.
We are people that have amazingtalents.
We've been given the challengein life to do life as everybody
(26:29):
else, along with the challengeswe've been given.
Uh, so I feel like we do life,if you will, a better in a, not
necessarily better way, butwe're able to overcome things
that I think people, if theywere given the same challenges
may not have been successfulwith.
So I do hope that whatever I doin life, even with my MSW that
(26:55):
I, that I'm able to make adifference for others.
Kristen (26:59):
Very eloquently put.
Well, I know you will be amazingand your future clients will be
lucky to have you.
Sharizod (27:08):
Thank you.
Kristen (27:09):
Sharizod, thank you so much for joining us today and
giving us a look into yourexperience.
We would love for you to comeback and share more about your
journey with disabilityadvocacy.
And if people want to connectwith you, what's the best way to
do that?
Sharizod (27:28):
Um, I would say probably by email, which is
really the simplest email,because my name is already
pretty challenging.
So if you have my first name,which is Sharizod spelled S as
in Sam, H-A as in apple, R-I-Zas in zebra, O-D as in David,
@gmail.com.
Kristen (27:50):
Perfect.
Thanks for listening to thisepisode.
Our show is hosted by me.
Kristen Gooch produced byJennifer Howell, edited and
mixed by Ms.Boye.
Our script and production teamincludes Joey Gidseg, John Beer
(28:14):
and and Toby Al-Trabulsi.
Special thanks to Jourdan Huertaand Sharizod Aboii for being our
guests.
I'm Kristen Gooch and you'vebeen listening to True Tales by
Disability Advocates.
Don't forget to follow us onFacebook, Twitter, and
Instagram.
Kamand (28:37):
All episodes of The True Tales by Disability Advocates
are free on Apple Podcasts,Spotify, and anywhere you get
your podcasts.
The program is funded in part bya grant from the Texas state
Independent Living Council, theAdministration for Community
Living and individuals like you.
To learn about the SpeakingAdvocates Program sign up for
(29:01):
our newsletter at Art SparkTexas dot org.
That's A R T S P A R K T X.org.
This free virtual training isopen to people of all
disabilities, no matter whereyou live.
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