Awakenings

Full transcripts of all episodes available at https://truetalesbydisabilityadvocates.buzzsprout.com

In this episode, guests Laura Odom and Sheena Walter tell host John Beer about the “Awakenings” in their lives. Laura pushed through doubts brought on by years of narcolepsy to try her hand at a new adventure (“Finally Waking Up”), while Sheena flipped self-consciousness about her PICC line into a new and very public role of “Advocacy, Courage and Self-Compassion.” Both women took a stroke of boldness that ignited newfound lives of advocacy and pride in themselves! Listen in to learn about their victories. Toby Al-Trabulsi produces, Kristen Gooch and Ms. Boye mixing and editing, and Jennifer Howell and Joey Gidseg provide script and production.

HOST
No moss gathers on a rolling wheelchair, and throughout the state of Texas are sightings of John Beer and his travel trailer. With his wife's help, John spotlights the disability side of skydiving, fire evacuations and other topics for New Mobility magazine. You’ll also find him on MS Connections at TheMighty.com – and he's wheelie excited being on the team creating Art Spark Texas' new podcast, True Tales by Disability Advocates. John was a member of our first Virtual Speaking Advocates Training and is one of the storytellers in Episode 2, “Life on Wheels”. 

Keep up with John Beer on his blog: Wheelieoutthere.blogspot.com
Follow John on Instagram: https://www.instagram.com/wheelieoutthere/

GUEST
Laura Odom is a Tyler, Texas-based advocate primarily for disability and rural causes. She is also the office manager for a locally owned textbook publisher. When she isn’t working, she takes her Australian Shepherd/Border Collie-mix dog for car rides and loves to snuggle with her two black cats. She enjoys writing, playing guitar and cross-stitching. Laura was diagnosed with Narcolepsy Type 1 in January 2021 after pursuing a diagnosis for almost 20 years. She continues to raise awareness about Narcolepsy in hopes that more people won’t have to wait that long to receive treatment.

On social media, you can find her at: Instagram: @ordinarileigh
TikTok: ordinarileigh
Twitter: @lauradoestweet
Facebook: Laura Ashleigh Odom

GUEST
Sheena Walter is an artist at Imagine Art in Austin and also works for Art Spark Texas as a social media influencer. She wants to advocate for a change in how people with disabilities are viewed in our society and make sure we have not just a seat at the table, but a voice as well. Her sources of strength and inspiration are her faith, her friends, her family, her pets and walks in the outdoors. 

 Find Sheena and her art on Instagram @sheenawalter1 

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.

Episode Transcript

Kamand (00:10):
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.

(00:32):
Keep listening to hear howlife's challenges can spark a
desire to speak out and advocatefor yourselves and others.

MsBoye (00:50):
You are listening to "Awakenings," Episode Eight of
True Tales by DisabilityAdvocates".
The podcast where Advocatesharness the power of
storytelling to build communitywith their peers and hope to
develop empathy in others.
A team of Disability Advocatescreates"True Tales" to give
voice to the personal storiesand lived experiences of

(01:12):
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, and that is about 61
million adults with 61 millionexperiences and points of view

(01:33):
about what it means to live witha disability.
Art Spark Texas believes thateveryone's life is enriched by
the inclusion of multiplevoices.
And we have been trainingDisability Advocates as
storytellers for over 20 years.
Our host for this episode isJohn Beer.

(01:54):
John was a member of our firstVirtual Speaking Advocates
Training Class and is one of thestorytellers, in Episode Two,
"Life On Wheels." He is joinedby two of his classmates, Sheena
Walter and Laura Odom, togetherthey celebrate moments of
awakening that changed theirlives.
Now, for many people, beinggiven a diagnosis can be

(02:15):
heartbreaking and terrifying.
For others it can be a, call toaction and rebellion and they
refuse to be defined by thelimitations of what they see as
offensive stereotypicallabeling.
But for some of us, like me,diagnosis is a relief.
Giving us insight into who we'vebeen, permission to be who we
are and expanding thepossibilities of who we can

(02:38):
become.
It gives us the gift ofconnection with others, tribal
affiliation and a longed-forsense of belonging.
For Laura, her diagnosis ofNarcolepsy was liberating.
After struggling for years, withanxiety, self doubt, and a
collection of other seeminglyunrelated symptoms, she finally
found a doctor who listened,validated her concerns and then

(03:01):
made the correct diagnosis.
Her story shows us thatreceiving the right diagnosis
and therefore the appropriatetreatment, can open up a world
of new opportunities.
No matter your experience orfeelings about diagnosis, the
ableism of the world around usis blatant and glaringly
obvious, but our internalizedableism is insidious devious,

(03:24):
and often comes disguised in acloak of rationality.
It can take control of us whenwe least expect it.
Sheena shares her story aboutthe gifts that came from waking
up, recognizing and publiclynaming the ableism, beneath her
thoughts and feelings ofembarassment From waking up,

(03:45):
recognizing and publicly namingthe internalized ableism beneath
her thoughts and feelings ofembarrassment.
By choosing to riskself-compassion, both women
became courageous self-advocatesand found a new pride in
themselves.
By stepping out of their comfortzones, they were gifted with the
embrace of empathic supportivenonjudgmental communities, which

(04:09):
acknowledged and celebrated whothey are as they are.
We are so glad you've taken timeout of your day to learn about
their victories and throughtheir stories you will
experience the power of"Awakenings."

John (04:29):
Welcome to the podcast, changing the world one story at
a time.
I'm John Beer your host for thisepisode.
We're talking about awakeningswe have as people with
disabilities.
Our guests, Sheena Walter andLaura Odom will share their
stories of how they learned tolive their authentic lives.
Sheena, Walter is here to shareher story,"Advocacy, Courage,

(04:51):
and self-compassion." WelcomeSheena.
Before you begin, would you liketo tell our listeners what led
you to The Speaking AdvocatesProgram?

Sheena (05:00):
When I first moved to Austin, my friend Renee Lopez
invited me to attend the OpeningMinds, Opening Doors program
that Art Spark put on.
She said she had taken the classand had grown a lot as a writer
and speaker, and that was agreat way for her to meet
people.
And I was looking to makefriends, and that is how I

(05:22):
became part of the program.

John (05:24):
Thanks Sheena! Now your story.
Take it away.

Sheena (05:41):
My name is Sheena Walter and I'm here to share my
story,"Advocacy, Courage andSelf-compassion." Don't say
anything, just let it go.
Not anymore.
Growing up, I learned to be adon't rock, the boat type of
person, trying to pleaseeveryone making as few waves as
possible.

(06:01):
Growing up, I was expected topass as much as possible, to be
as much like my peers as itcould be despite my
disabilities.
Over the years I've come tounderstand.
I don't have to hide how mybrain is wired or how I walk.
It's not shameful to use awheelchair as needed.
I've had to learn, to find myvoice and claim my place as a

(06:22):
disabled adult in the world.
I'm capable and valuable as Iam.
And so are my friends who havedisabilities.
I learned that it is importantto challenge injustice and speak
up for my rights.
Although I am still an introvertand hesitant to confront people.
I've learned how to do that in akind, but for manner.
I write letters that show I'mwilling to work with a business,

(06:44):
but not willing to acceptdiscrimination.
I am resourceful, articulate andtalented.
I use these skills to become anadvocate for myself and others.
It is okay for me to be proud ofwho I am and my work in the
world.
I have been honored to embodythe belief that disability is
not something to be ashamed of.

(07:06):
It is not something that needsto be hidden.
However, the stability of thisbelief was threatened when I got
my PEG tube in December, 2020.
I have a diagnosis, caused byone of my underlying medical
conditions calledGastro-paresis.
My stomach doesn't work well.
I found myself purposely pickingbaggy and loose clothing in

(07:29):
order to hide the tube.
It seems getting the tube haschallenged me to face a new
level of internalized ableism.
I use a wheelchair part time,but this didn't hit me as hard
as it did when I got my tube.
I felt shame, because I thoughtpeople wouldn't accept me with
it.
It's been a struggle.
I heard somewhere you are onlyas sick as your secrets.

(07:51):
The internalized ableism hasreared its ugly head.
It feeds on secrecy and I'mhaving to fight it hard.
Committed to being healthy, Imade the decision to come out
about both my PEG tube and myinternalised ableism.
I decided to be brave.
I wrote about my experience andtook a selfie and posted both on

(08:12):
social media.
In the photo I'm wearing a shirtwhere you can see the outline of
my tube and my swollen bellyfrom gastro-paresis.
This really isn't something Ishould feel, I need to hide to
be accepted.
It's part of my life.
I shouldn't be expected bymyself or others to hide my
disabilities in order forsociety to see me as an equal

(08:34):
person.
I'm still integrating the kindsupportive responses to my post.
I continue to work through theableism I've taken into myself
as a result of past experiencesand socially constructed ideas
of normalcy and worth.
In order to truly be not justaccepting my disability, but

(08:54):
embracing it and to fight thesebeliefs and feelings.
They aren't fact, and aren'treality.
I'm not less of a person becauseI am disabled.
I am committed to living up tomy belief that disability isn't
something that needs to besecluded and locked away.
As a society we need to notmerely tolerate disability, but

(09:15):
accept and embrace it.
People with disabilities, areloved by God.
People with disabilities arecapable of being friends or
significant others.
We are no less beautiful, noless desirable, no less
acceptable to be in public.
We are no less because of howvisible or invisible our
disabilities may be.
Not less period.

(09:36):
Advocacy is often about talkingout and taking action in the
world, but being an advocatestarts within me.
If I want society to changetheir mindset about me as a
person with disability, I mustfirst change mine about myself.

John (10:05):
Welcome back.
I'm here again with Sheena.
Thanks for sharing your storywith us.
You wrote your speech at thebeginning of the year.
So how has your situationchanged since then?

Sheena (10:15):
I had to have my PEG tube removed in February.
The site was not healing well.
Um, I might need a new tube inthe future, but for now, things
are pretty stable with changesin diet and medication.

John (10:28):
Good.
And what about people'sreactions surprised you when you
came out, posting the picturethat didn't hide your peg tube?

Sheena (10:36):
I was surprised at how accepting and supportive they
were and they did not treat itlike it was a big deal.
Um, they still treated me like Iwas the same person.
I became more accepting ofhaving a tube and about the
changes that my body wasundergoing.
They're just a human, humanexperience.
We all experience, experiencechanges in one way or another,

(10:58):
and it's nothing to be ashamedof.

John (11:00):
You said.
"I had to learn to find my voiceand claim my place as a disabled
adult in the world.
I'm capable and valuable as Iam." I want to thank you for
that message,'coz my youngerself, I was hard on my wife as
my caregiver and hard on myselfbecause I tried to hide
everything.

(11:20):
So I, I wish I could have heardyour message many years ago, and
now I'm hoping that everyone canhear what you're saying.
Right?
So what are you working on nowand how can listeners follow
you?

Sheena (11:33):
I'm an artist at Imagine Art here in Austin.
And I do have an Instagramaccount SheenaWalter1, just the
number one and you're more thanwelcome to follow me.
Send me a message.
I'd love to connect with you andthank you for having me on.

John (11:50):
Thanks again.
Stay with us for our secondstory when Laura Odom shares her
own tale of awakenings.

(12:21):
Welcome back to True Tales byDisability Advocates, we took
our episode title Awakeningsfrom the story of our next
guest.
Welcome, Laura Odom.

Laura (12:31):
Thank you for having me.

John (12:33):
Laura, before you share with us would you please tell
our listeners what led you toThe Speaking Advocates Program?

Laura (12:40):
I was invited to Speaking Advocates by Joey, my friend
err, who invited me to work onmy storytelling abilities.

John (12:50):
Great, well, we're glad to have you.
Thanks, Laura, let's hear yourstory

Laura (13:07):
Hi, my name's Laura and this is my story,"Finally Waking
Up".
I've always been shy andreserved.
There aren't too many momentswhere I've ever made a presence.
I've always tried to blend inwith the wallpaper.
I'm rarely loud, rarelycomfortable in any environment
or in any crowd.
I'm uncomfortable in my ownskin.

(13:29):
Slowly I've been trying to breakmyself of this shyness and take
ownership of my life.
In order to make any progresshowever, I realized that I had
to let go of my deep seatedbelief that I can't make
decisions for myself.
I had an awakening if you will,(get it, because I have
narcolepsy?) and I realized thatI was an adult and I don't have

(13:50):
to ask permission to try a newhobby or go to a new doctor.
I could just, do it.
I also realized that for solong, I had thought so poorly of
life because I was exhausted allthe time.
And I tended to focus on thenegative.
I was tired of looking at lifebleakly, so I began to actively

(14:10):
seek reasons to live and enjoywhat time I have on earth.
I found a doctor who was willingto listen to me, and who began
to treat me for narcolepsy.
Finally, some relief from mysleepiness.
Now I had enough energy to trynew things.
I started taking guitar lessons,something I've wanted to do my
whole life and traveling to meetwith friends and family pre

(14:34):
COVID.
My favorite new adventure was anacting class.
This was extremely out ofcharacter for me.
I'd met the instructor, Garrettat a Comic Con and he told me he
was offering an acting class.
The thought of attending wasterrifying, which is exactly why
I wanted to do it.
The class was small, only aboutsix or seven students and it

(14:56):
wasn't theater it was in frontof a camera.
I'd never felt more comfortableand freer to be myself within
that class.
Everyone was warm and welcoming.
No one intimidated me.
And I felt like I could reallybe myself.
It was also the most confident Ihad ever felt.
I really believed I could dowhat these students were doing

(15:17):
and face the criticism I wouldget without feeling humiliated.
For someone who's uncomfortablein her own skin, and always has
a wall between herself andothers.
This is a huge empoweringmoment.
I felt vulnerable, but insteadof letting it inhibit me, like I
have in the past, I allowedmyself to be at peace with the
vulnerability.

(15:38):
It was a liberating experience.
Unfortunately, COVID hit beforeI had a chance to attend another
class, but I have something tolook forward to when it's safe
to go back.

John (16:00):
Laura, thanks for sharing that.
What was it about your actingclass that made you go from
feeling terrified to liberated?

Laura (16:08):
I was afraid because this was something very new to me and
it was outside of my comfortzone.
But when I realized that thepeople in my class weren't
judging me, they weren't goingto make fun of me, I felt much
more comfortable.
Being able to relax in a roomfull of strangers was also
really new to me.
And I found that liberatingbecause I'm not usually

(16:28):
comfortable around new people

John (16:30):
Right! So now when you're hit with a new challenge and you
hear that voice of self-doubthow do you manage it?

Laura (16:38):
I remind myself why I'm in the situation to begin with,
whether it's to try somethingnew, which is always fun and
exciting.
If it's to develop skills that Ialready have, in which case I
already know that I can dowhatever it is that I'm trying,
this is just to improve onsomething that I'm already
capable of doing.

John (16:58):
So right! Laura, thanks again for giving us your look at
your experience.
Your, your story is so good atsharing you moving out of your
cocoon at the beginning and thenspreading your wings at the end.
But to get there, you had achallenge, so you had to walk,
through a door and, uh,listening to it, we all had that

(17:19):
reaction of Yes!" Because wecould relate.
Beautiful job, Laura.
So what are you working on nowand how can listeners follow
you?

Laura (17:27):
I just created a Tik-Tok, so I'm going to try to do some
videos about narcolepsy, myjourney with being diagnosed and
how long it took to getdiagnosed.
Things of that nature.
You can find me on Tik TOK at"Ordinarileirgh" that's O R D I
N a R I L E I G H.

(17:50):
This is also my Instagramusername, and you can find me on
Twitter at"Lauradoestweet" oneword and Facebook at
"LauraAshleyOdom".
Although I'm not on Facebook awhole lot.

John (18:02):
All right! Well, thanks a lot, Laura, it was good having
you here, I appreciate yousharing your message.
Thanks.

Laura (18:09):
Thank you for having me.

John (18:12):
Alright! This show was produced by Toby Al-Trabulsi.
It's edited and mixed by KristenGooch and Ms.
Boye.
Our script and production teamincludes Joey Gidseg, Jennifer
Howell, and Kristen Gooch.
Special thanks again to SheenaWalter and Laura Odom for

(18:34):
appearing.
I'm, host John Beer and you'vebeen listening to the True Tales
by Disability Advocates podcast.
Don't forget to follow us onTwitter and Instagram.

Kamand (18:47):
All episodes of The True Tales by Disability Advocates
for 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

(19:11):
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.