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For Disability Pride Month, Kaye Love chats to Tanya Winters and Kamand Alaghehband about their stories “Pediacrisis” and “Kamand’s View: No More Prejudice”. Stories about how they navigate the predictable and unexpected barriers they meet daily. We hope your day is enriched by listening to “Independence”. Full transcript available.
World Health Organization on Disability

Guest: Tanya Winters - A Chicago native, Tanya fell in love with Austin after a weekend trip. She loves creating and enjoys pushing the boundaries of arts and disability! Tanya's career as an artist began in theatre in 2005 and shifted to dance in 2007 thanks to a wooden chair and the desire to tell her story. As a student of Austin Community College, she gained an extensive background in improvisation and choreography. She has learned from some of the dance world’s top artists like Alito Alessi Nina Martin, Heidi Latsky, Sandra Paola Lopez, and Stephan Koplowitz.  Tanya started making work of her own and became a certified DanceAbility instructor in 2011. Currently, she is a member of the Body Shift Collective, where she loves dancing, teaching, creating and collaborating with other dancers with and without disabilities. Tanya is the co-choreographer of Together and Apart an ongoing duet that explores the relationship between movement, environment, and the art of human interaction. She hopes that her work will motivate other dancers to think outside the box and erase the line between ability and disability.  Tanya also has a solid background in Social Work, grant reporting, and case management. She possesses excellent communication and organizational skills which help her deal with the complex regulations governing social services. Walk & Roll: https://youtu.be/1IQ6W2NybfA
Constable Pct. 5's Disabled Parking Awareness Video: https://youtu.be/LR0XoXb_w-g
Together & Apart: https://vimeo.com/183923919 And You See Me: https://youtu.be/RSB_WFRbEEI

 Guest: Kamand Alaghehband - My name is Kamand Alaghehband. I was born in Austin Texas, and I have autism. In 2020 the CDC reported approximately 1 in 54 children in U.S. diagnosed with autism is more than all cancer patients combined. But what about us? what happens to our future? What kind of jobs and lifestyle is available to support us. All my life I tried to support not only me but all generations with disabilities.  I am me, I am Kamand. I love Special Olympics. My favorite sports are swimming, basketball, and Track. I am a member of the executive committee of special Olympics athletes leadership in Texas. I created podcasts, TikTok, video games and a variety of health activities during a pandemic to keep the athlete's minds occupied in a healthy way.  Unfortunately, I wasn’t able to maintain some of those activities cause was costing me money.  My mission with my population is to bring peace for today and create a vision for tomorrow for disabled population.  I feel grateful for what I have. I choose to be thankful. I choose to be happy. Gratitude turns what I have into enough and more. My Instagram info is ka.special . My TikTok account is KAspecialglobal.

Host: Kaye Love - Kaye has over eight years of experience working with individuals with developmental and learning disabilities, including Intellectual Disability and Autism Spectrum Disorder, in Special Education and Vocational Rehabilitation. She has experience providing spiritually sensitive counseling to clients who identify with diverse belief systems, including Buddhism, Christianity, Ethical Humanism, Hinduism, Islam, Judaism

For more details about our programs go to Art Spark Texas, True Tales Podcast Page.

Episode Transcript

Kristen (00:09):
Welcome to 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.

(00:33):
Keep listening to hear howlife's challenges can Spark a
desire to speak out and advocatefor ourselves and others.

MsBoye (00:50):
Hello, you're listening to True Tales by Disability
Advocates, the podcast whereAdvocates harness the power of
storytelling to build communitywith their peers and hope to
develop empathy in others.
This episode is being launchedin July to celebrate Disability
Pride Month and the theme forthis episode is independence.

(01:14):
According to the W.H.O./theWorld Health Organization:
"Disability results from theinteraction between individuals
with a health condition, such asCerebral Palsy, Down syndrome
and Depression with personal andenvironmental factors, including
negative attitudes, inaccessibletransportation, and public

(01:35):
buildings and limited socialsupport.
A person's environment has ahuge effect on the experience
and extent of Disability.
Inaccessible environments createbarriers that often hinder the
full and effective participationof persons with Disability in
society on an equal basis withothers.
Progress on improving socialparticipation can be made by

(01:58):
addressing these barriers." AndI know that for most of us, most
of our listeners, this might bea totally new way of looking at
Disability.
The idea that health conditionsare not the Disability, but it's
the way society accommodates,responds to and labels those
health conditions that is theproblem, is a really interesting
way to look at it.

(02:19):
These responses, labels and lackof accommodations are the causes
of any Disability we experiencein life.
These are the things that impactand limit our ability to live
independent lives.
The stories you'll hear in thisepisode give very different
reflections on what it means tobe independent.

(02:39):
Host Kaye Love chats with TanyaWinter and Kamand Alaghehband
about their stories"Pediacrisis"and“Kamand's View: No More
Prejudice." These two wonderfulwomen talk about the way they
navigate the predictable and theunpredictable barriers they meet
day to day.
A team of Disability Advocatescreates True Tales to give voice

(03:01):
to the personal stories andlived experiences of disabled
storytellers.
We offer a unique and oftenunderrepresented perspective to
the growing community ofpodcasts listeners worldwide.
Because here at Art Spark Texas,we believe that everyone's life
is enriched by the inclusion ofmultiple voices, we have been
training Disability Advocates asstorytellers for over 20 years.

(03:25):
We acknowledge and thank theDisability Rights Advocates
whose courage laid thegroundwork for the ADA and the
independence that many of usenjoy today.
And we are proud to bring youstories that build upon their
legacy.
We offer you this episode as acelebration of Disability Pride
and hope your day is enrichedfrom listening to"Independence"

(03:47):
by True Tales by DisabilityAdvocates.

Kaye (04:00):
Welcome to the podcast where we change the world.
One story at a time I'm KayeLove and I'm your host.
Our guests this week are Tanyaand Kamand, who will tell
stories of their pursuit ofindependence.
Our storyteller, Tanya Winter ishere to share her story

(04:22):
"Pediacrisis", which she wroteand performed when she was a
member of the Actual LivesAustin troop.
Opening Minds, Opening Doors wasan offshoot of Actual Lives
Austin.
First, tell us a little bitabout your history of advocacy,
including your involvement inActual Lives Austin.

Tanya (04:39):
Okay! Well, I always tell people that I became an Advocate
when I was 28.
I've had my Disability all mylife, but there was definitely a
moment when I was 28 that I canactually pinpoint back to.
Back then I actually took anadvocacy training called
"Partners in Policy Making," andit was the first day and they

(05:02):
had us Umm, introduce ourselveswith microphones.
So the microphone comes to meand I sit back in my chair and I
just had this epiphany moment.
I was like,"Holy crap!Disability is a culture.
Look at all these people.
And I'm part of this culture.
I can't believe it." And itreally kind of just put this

(05:24):
passion inside of me.
So I finished the course and,um, just basically jumped right
into advocacy right off the bat.
The first thing to do is to getinvolved in your community.
So I started with the Mayor'sCommittee for People with
Disabilities, where I remained acommissioner for 10 years.

(05:45):
And then I also had a couple ofjobs where I was really doing a
lot of public speaking andtraining other Advocates with
disabilities.
So it just kind of snowballedfrom there.
You know, you get to knowsomebody who gets to know
somebody else who's working on aproject and you just kind of go

Kaye (06:05):
Nice, that sounds like you've had some really good
experiences with advocacy.
Thank you for sharing those now.
Let's hear your story.

MsBoye (06:27):
This is"Pediacrisis" written and performed by dancer,
Tanya Winter.

Tanya (06:37):
Have you ever had one of those moments where you're so
embarrassed or uncomfortablethat you actually could see
yourself running away screaming?
One of those moments you'drather forget.
Yeah, me too.
Can I tell you about it?
Okay.
About a month or two ago, Idecided to get a pedicure.

(07:00):
Now I'm a girly-girl, but youwould never know it.
I almost never wear makeup.
I value my sleep too much.
This pedicure was a necessity,it happens when your muscles are
so tight that you can't reachyour toes to cut your nails.
I walk in and immediately ashort Vietnamese woman, my

(07:23):
height, imagine that, is pullingme by the arm.
I felt violated right off thebat.
"You want manicure or Pedicure?"She said, in that
broken-English-as-a-second-languagekind of way.
"Both." I responded, whiletrying to get her death grip off
my arm.
Suddenly I look up and MountEverest has sprung out of the

(07:45):
floor.
Okay, okay, it wasn't MountEverest it was one of those
pedicure chairs, you know theones, with the built-in massage,
on the blocks?
I was horrified.
"How in the world am I going toget up there?" I asked myself.
My inner child responded in atypical way, with a very

(08:06):
enthusiastic,"You can doanything you put your mind to."
I let the fire in my belly, hurlme into the chair.
"My name, Anne," the woman said,"You live with your Mom and
Dad?" As she pulls off my shoeswithout asking.
Why did I have to wear my Docstoday?
"No, I live in my own place.

(08:28):
That's my car out there." Oh,you live by your self?" As she
starts the water and clips, mynails,"How?
You need help." Anne added.
"I'm fine.
I have my own job." I boldlystated, trying to keep in mind
her culture.
She was raised by her family.
Sick children, like me had to betaken care of.

(08:52):
She was awell-intended-ignorant.
Is it even worth the energygetting pissed that she doesn't
know I can take care of myself?
I'm a tax paying citizen forChrist sake.
How do you begin to explain theidea of independence to someone
whose self image is dictated byher family values?

(09:13):
Before I can begin to try, Annewas putting those ridiculous
paper flip-flops on my prettytoes.
I can't walk in those!" Ithought, as I was faced with the
task of getting down off ofMount Everest.
I was horrified as Anne swungmy, my feet out of the tub of
water.
I could feel my butt slip,visions of"Lifeline" commercials

(09:36):
danced in my head.
But before I could say,"I'vefallen and I can't get up," I
could feel my butt scrape alongthe side of the mountain as my
flip-flop fell off my foot.
Anne watched my almost fall, shehad lawsuit written all over her
face.
All that was left to do was pay.
I handed Anne my check card.

(09:59):
A$6 tip should be enough to endthis embarrassment.
I filled in the receipt and madea move for the door.
As I do Anne protests,"You tipme.
You can't, you have no money." Ijust took a deep breath and she
took my six bucks.

Kaye (10:35):
Thanks for sharing your story with us today.
This story illustrates themisconceptions that people with
disabilities deal with.
What would you hope for peoplewho work in occupations that
serve the public to take withthem today?

Tanya (10:48):
Well, my advice to them would be to really try and
listen.
You know, I think everybody isin such a rush these days, that
they just forget to actuallylisten to what a person is
saying.
So I would say listening is thefirst key.

(11:08):
Secondly, you know, askquestions.
If, if you, you know, all of ushave had those moments where we,
we think to ourselves, gosh, I'mnot familiar with this situation
right now.
And so it's really important tojust ask questions.
You know, she could have said,"Can I help you?" You know,"I'm

(11:29):
going to grab your arm now." Butthere was none of that.
There was just this yanking thatI think part of it was I think
like, just cause you know,everybody's busy.
She wants to get me in thechair, get started.
I understand that.
But if she would've just askedmore questions, it would have
been an easier, um, experience.

Kaye (11:49):
That sounds like good advice, listening, asking
questions and it sounds like tooasking for permission.

Tanya (11:55):
Yes.

Kaye (11:56):
You also mentioned the decision not to waste your
energy by getting upset.
What can you share about thatskill to assist others with
disabilities who are learning tonavigate the emotions that arise
when dealing with this kind offrustration?

Tanya (12:12):
I would say always take a deep breath first, before, you
know, really, really reflect onyour thoughts before you open
your mouth to speak.
And just like you hope thatpeople listen to you and ask you
questions.
You need to do the same.
You know, uh, you need to makesure you're listening and you

(12:34):
also should be asking questionsto that person.
And I always think that youshould really, you know, as
people with disabilities, we'realways telling people,"You don't
know what disability is likeuntil you have one." And so we
need to do the same to allpeople and try to put ourselves

(12:55):
in their shoes and try toimagine um, how they're feeling
and, and the questions that theywould like you to ask and just
how, just how, how they'refeeling.

Kaye (13:11):
That's great advice.
It's great chatting with you,Tanya.
I'm so thankful you were able tocome and share your experience
with our audience.
Tanya is excited about upcomingperformances with Art Spark
Texas Dance, which will beposted to Art Spark tx.org when
information becomes available.
Thanks again to Tanya.

(13:32):
Now stay tuned for the secondpart of our show where we will
hear from Kamand.

(13:52):
Welcome back, we are here withKamand Alaghehband, who will be
sharing her story,"Kamand'sView, No More Prejudice."
Kamand, tell us a little bitabout how you became involved in
Opening Minds Opening Doors.

Kamand (14:09):
I was involved since 2015.
Back then they called it VSA,which stands for Very Special
Art I got introduced to VerySpecial Art Organization, since
I was always struggling withwriting, I decided to attend

(14:30):
Opening Minds, Opening Doors,writing classes.
All of my academic life atschool, I was hesitating to
write.
I was so afraid of peoplejudgments and what they've been
thinking of me.
Writing classes was coming withbutterfly in my stomach.

(14:55):
"What if I don't fit to thissociety?
Or people think I am weird?"This always prevented me to
write and improve myself, untilI met ERIC CLOW the instructor
and founder of Opening Doors,Opening Minds.
I never forget my first classwith him.

(15:18):
He was very calm and veryskillful with us.
I remember our first writingassignment was"All you have to
do is listen to the outsideworld sounds and write about
what you hear and what it meansto you." He said, there will be

(15:40):
no critics about your writing.
We would not judge what youwrite or how long you write
about it.
That was the beginning of mywriting involvement.
And since then I've been takingnonstop writing classes through
Art Spark Texas.

(16:01):
I owe the organization, all ofmy writing skills because of
the, kind of the freedom theygave me not to be afraid of
writing and get judged.
I am where I am because of them.
Thank you Art Spark, Texas.

Kaye (16:19):
Great! Now, please share your story with us.

MsBoye (16:29):
This is"Kamand's View: No More Prejudice" written and
performed by Kamand Alaghehband.

Kamand (16:41):
Okay.
I am myself.
I am me.
I am Kamand.
I feel proud of myself for who Iam.
My wish allows me to travel tosee my family and sit in a big
group of aunts, uncles, cousins,and grandparents.

(17:02):
I love my family.
My grandparents are sweet, likea big box of chocolates.
Sometimes when I visit them, Iget a sugar rush.
My big wish is to graduate from"nonPareil." I want to be a
cartoon animator and work forDisney company.

(17:22):
I want to be a college professorat UT teaching science and
become a guest speaker.
I want to speak in front of amillion people about how to
communicate my wants and needs.
I would like to travel aroundthe world first class.
I will offer free education tothe people around the world

(17:45):
about common ground so there'llbe no more prejudice.
I have two pictures taken of mein 2015.
In the first I'm holding a signthat says,"My dream is one day
to be..." In the second picturemy sign says,"...to be me and

(18:08):
show the world who I am." Everytime I look at these pictures,
it gives me a great joy and asense of pride.
All my life I've been a pleaser,I always try to make other
people feel happy.
I've been a public speaker toraise money for many

(18:29):
organizations.
I am proud to tell my story.
I've been volunteering at Dellchildren's hospital since the
age of 13, up until 12th grade.
After that I've beenvolunteering off and on for
different organizations, such asHospice, Special Olympics and

(18:52):
nonPareil.
When I help others, it gives agreat joy into my heart.
All my life I always felt lovingpeople, no matter their age,
gender, religion, or race.
Having a gift of loving everyonebrought so much joy to my life

(19:13):
and I am inviting you all tounify with me, to educate
others, to love each other.
The more we love, the less wewill see each other differences.
Together we can overcomeprejudice.
Thank you for listening.

Kaye (19:42):
Welcome back.
I'm here with Kamand.
Thanks for sharing your storywith us today.
You talk about how yourvolunteer work gives you great
joy.
What are some of the things youhave done as a volunteer?

Kamand (19:54):
I volunteered at Special Olympics, Texas by reciting
Athletes Oath at competitions.
I also presented speeches tovarious vendors and facilitated
fundraising and recruitment ofvolunteers and donors.
I volunteered at Dell Children'sHospital since I was 13 years

(20:19):
old, up to 12th grade.
I was helping their gift shop,hematology clinic, sanitized,
and maintain cleanliness ofchildren's play area, engaged
children in arts and crafts andassisted in patient
transportation section.
I conducted office andorganization work at Hospice

(20:41):
Compassus and I volunteered atthe Seton Medical Center in
Round Rock for years.

Kaye (20:47):
Wow, that sounds like you've done some really great
work and some important things.
What is your advice for otherpeople with disabilities who
would like to get involved withvolunteering?
Don't underestimate yourselfwith your abilities of what you
can and cannot do.
If you desire to volunteer atany organization, just do what

(21:09):
you can and enjoy every momentof it.
You're volunteering work, nomatter how small it is, will be
appreciated.
And I guarantee you, it willbring a huge joy to your life.
It was great chatting with youtoday Kamand.

Kamand (21:27):
Cool, thank you.
Thank you Art Spark Texas.

Kaye (21:33):
This show was produced by Brittany Sessum.
Special, thanks to MsBoye andBrittany Sessum for editing and
mixing.
I also want to give a specialthanks to Tanya Winter and
Kamand Alaghehband for takingtime out of their schedules to
be with us today.

MsBoye (21:52):
Did you know, you can help us with our mission by
sharing this episode with yourfriends, rating the show while
leaving us a review.
We'd love to hear from you onour True Tales podcast, Facebook
page.
And of course, don't forget tofollow Art Spark Texas on
TikTok, Instagram, and Twitter.
And this Disability Pride Monthand all year round, remember

(22:16):
what Meryl Streep said?
"What makes you different orweird, that's your strength." So
until next time, which will beour final episode of this
season, be proud of youruniqueness and be kind to
yourselves and others..

Kristen (22:41):
All episodes of the True Tales by Disability
Advocates are free on ApplePodcasts, Spotify, and anywhere
you get your podcasts.
This program is funded in partby a grant from the Texas State
Independent Living Council, TheAdministration for Community
Living and individuals like you.

(23:03):
To learn more about The SpeakingAdvocates Program, sign up for
our newsletter at ArtSparkTexasdot org.
That's A.R.T.S.P.A.R.K.T.X.
dot O.R.G.

(23:23):
This free virtual trainingprogram is open to people of all
disabilities, no matter whereyou live.