Episode Transcript
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John Beer (00:11):
Welcome to to True
Tales by Disability Advocates,
authentic voices of peoplethriving 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.
Keep listening to hear howlife's challenges can spark a
(00:32):
desire to speak out and advocatefor themselves and others.
MsBoye (00:49):
Welcome to True Tales by
Disability Advocates podcast,
the"Love Has No Limits" bonusepisode, in honor of Valentine's
day.
A team of disability advocatescreates The True Tales to give
voice to the personal storiesand lived experiences of
disabled storytellers.
We offer our unique and oftenunderrepresented perspective to
(01:12):
the growing community ofpodcasters, worldwide.
Love and romantic relationshipscan bring us the greatest joy in
our lives, but at the same time,they can bring our most
difficult challenges.
I once heard someone sayrelationships, put miracle, grow
on our issues(laughs).
For folks with disabilities,there can be added layers of
(01:33):
complications.
In this episode, we bring you alove story and ask you to
consider how a spiritualpractice of mindfulness and love
with no limits, might change howyou interact with people with
disabilities you encounter.
Host Jennifer Howell introducesmarried couple Dave and Kate
(01:54):
Chapple.
They are our first guests forwhom speech is not their primary
way to express themselves.
They communicate usingArgumentive and Alternative
Communication devices, ACCdevices, such as text to speak
technology and voicesynthesizers.
Because of the limitations ofcommunication device technology,
(02:17):
Kate and Dave chose to preparetheir answers in advance.
Even so there are often longsilences in the conversation,
and this is especially true whenusing eye-tracking to navigate
the equipment.
In our recording sessions, weallowed time for them to respond
at their natural pace, but wechose to edit these silences in
the final recording to fit theflow of the podcast format.
(02:41):
However, you may notice moresilence than usual.
We did this to honor the essenceof this form of communication.
We have also left in the beepsthat sprinkle these
conversations as the equipmentmoves along.
Wherever possible.
I have also indicated them witha(beep) in the transcript.
For the final question in Kate'sinterview, she wanted to add to
(03:06):
her planned response, but isconcerned that her listeners who
are not familiar with her vocalstyle may not be able to
understand her.
So she asks episode producer,Kristen Gooch to interpret.
Kristen is familiar withsupporting Kate in this way
because they've worked closelyfor the last year on a team
(03:27):
project.
You'll hear Kate's voice for thebeginning of the response and
Kristen's voice for the detailslost in the recording process.
In her story,"My Journey WithReligion", Kate picks up on the
themes of episode three,"Community, Faith and
Inclusion." and tells us herearly experiences in church
(03:48):
communities.
She points out that well-meaningfolk with good intentions, still
need to be mindful of ableism,underlying their message and in
the language they choose.
In the second half of the show,Dave reveals the lengths he was
willing to go to be with Kate,the love of his life.
His story"My Life in a NursingHome" shows how he used humor to
(04:12):
get through an inconvenient,complex situation.
But the story also leaves thelistener outraged at the
absurdity of a system that oftencontrols the life of folks with
disabilities.
True Tales by DisabilityAdvocates, harnesses, the power
of storytelling to buildcommunity with peers and hopes
to develop empathy and others.
(04:34):
Whether you are listening tothis episode on Valentine's day
or a week, or at another time ofthe year, ask yourself if you
have the courage to live andlearn in all areas of your life
as if love has no limits.
Jennifer Howell (04:57):
Our first
guests, Kate Chapple is here to
share her story,"My Journey withReligion".
Welcome Kate.
Before you begin, would you tellour listeners what led you to
The Speaking Advocates Program?
Kate Chapple (05:14):
I used to be a
part of Actual Lives with Art
Spark.
(beep) It was formerly known asV.
S.
Arts.
(beep) Then one day I got hookedup with The Speaking Advocates I
decided to join.
(beep) I really enjoyed ActualLives, so I thought it would be
(05:37):
fun to be in The SpeakingAdvocates(beep) and it was.
Jennifer Howell (05:44):
Oh, thank you
so much Kate.
We are looking forward tohearing your story.
Please share with us.
Kate Chapple (06:05):
I was born into a
Baptist family, the youngest of
three daughters.
(beep) My first memory thatinvolved worship was at a camp.
I attended for children withdisabilities at around six years
of age.
(beep) Camp was two weeks longand on Sundays they had a
(06:26):
religious service.
beep) I didn't think much of it,beep) I just loved watching the
sign language interpreters.
beep) The idea of a guardianJesus was a concept I could not
comprehend at that age.
And unfortunately I wouldn'tcomprehend this or believe in
(06:49):
God for a long time.
beep) Sure, my grandmother on mydad's side of the family taught
me the words to"Yes Jesus LovesMe", but it was just a song,
just like some songs I like onthe radio today.
I didn't really know what thelyrics are saying, but I still
(07:13):
loved the melody.
(beep) My family attended churchevery Sunday.
I dreaded the thought of going.
beep) My mom getting me alldressed up and oh, the torture
of her curling my hair with thecurling iron.
(07:33):
beep) Ninety-nine percent of thetime, God could not save her
from burning my ears orforehead.
Because of this, I began toequate church Sundays with
torture.
Then once I suffered through thedreaded curling iron, I had to
(07:54):
face the looks and pat on thehead with the"poor little
handicap girl in the wheelchair"phrase,(beep) I developed this
hatred against religion.
beep) If these people claim tobe loving Christians followers
of our Heavenly Father, why werethey treating me like I was some
(08:17):
kind of freak?
beep) This was the attitude Ihad most of my younger years,
but God that shine through a fewtimes.
beep) Somewhere in my middleschool, years of attending
Sunday school, there was a boyin my class who befriended me.
(08:39):
beep) I am not sure why he wasso accepting of me, but he had a
great Godly spirit.
(beep) I could not wait to go toSunday school to spend time with
him.
(beep beep) To me spending timewith the one person at church
who saw me for more than mydisability brought me closer to
(09:02):
God.
Unfortunately, my only churchfriend moved away and I stopped
going to Sunday school.
(beep) It was around that darktime when my parents separated,
which lead to their divorce.
beep) During my teenage years, Idecided to sleep in until 12:30
(09:25):
on Sundays and forget church.
beep) My dad would get me up tothe smell of Popeye's chicken
and biscuits.
(beep) That was my religion andit worked for me.
(beep) I was trying to fit inand make friends.
beep) I finally had success withmaking real friendships that
(09:47):
would last for a life time.
(beep) Unfortunately, most of myfriends were anti religious and
we spent a lot of weekendstogether.
So for many years, church andGod were not a priority in my
life.
In my thirties, after many yearsaway from God, I hired an
(10:09):
attendant who attended GatewayChurch and read the Bible daily.
beep) We would have many longdebates about Jesus.
(beep) We debated if the Biblereally was the word of God, it
was written so long ago andtranslated a thousand times.
(10:31):
(beep) How was I supposed tobelieve this old book, about a
guy who would perform miracles(beep) so he could make me walk
and take my disability away?
(beep) But what if I didn't wantto be healed?
(beep) Think about it, beep) Iwill be disabled one minute and
(10:54):
perfectly normal the next, beep)but my normal, my normal was me.
beep) I would be so freaked outin my new normal that I wouldn't
even know what to do withmyself.
I had a million questions and Ifinally agreed to go visit
Gateway for answers.
(11:16):
beep) Also around this time,another wonderful Gateway member
became my attendant(beep) aftershe worked for me a couple of
months, she invited me to hersmall group.
beep) She would take me to hersmall group every week, even
(11:37):
though she wasn't even gettingpaid for taking me.
(beep) I think it was her goalto show me who God was and how
he loved me.
beep) She was successful.
beep) We started going toGateway most Sundays, but this
time there was no curling iron.
(11:59):
beep) Over time I grew more andmore to trust in God and
realized he had been with me allmy life.
I was just blindsided bydistractions and God couldn't
even find access into my heart.
(beep) One day in March my bossinformed me that my wonderful
(12:21):
job with this school district,working with students who use
communication devices would becoming to an end at the end of
the school year.
beep) I remember that day, likeit was yesterday.
beep) My boss told me I couldhave the rest of the day off.
(12:43):
(beep) suddenly I looked at himand said, that would be silly.
I had students to help that day.
(beep) I knew at that hardmoment that God was with me and
would open other doors for me tohelp children like me.
(beep) It was at this momentthat I truly saw where God would
(13:04):
lead me.
(beep) He would lead me whereverhe wanted me to go, as long as a
curling iron was nowhere insight.
beep)
Jennifer Howell (13:19):
Welcome back.
I'm here again with Kate.
Kate Thank you, we are sograteful to you for sharing your
story.
You said that you received looksand pats on the head from people
at your church, who said, Poorlittle handicapped girl," when
they saw you.
And you mentioned that theytreated you like you were some
(13:42):
kind of freak.
What else did they do that madeyou feel uncomfortable or hurt?
I know that there are manywell-meaning people who are
listening today who are unawarethat their actions and their
words may be hurtful.
So perhaps when they knowbetter, they will do better.
(14:04):
So please enlighten us.
Kate Chapple (14:07):
From what I can
remember since it was over 30
years ago, I thought to myself,I could understand why people
excluded me at school afterschool activities.
Or in other settings.
(beep) However, my family alwaystold me people who went to
(14:29):
church were loving, caring, andaccepting of one another because
they were all children of God.
(beep) My experiences of churchwere quite the opposite,
especially when I went to Sundayschool.
(beep) I remember feelingextremely isolated and my peers
(14:53):
almost never interacted with meor included me in group
discussions.
(beep) At least when I went toschool and to the general
education classrooms, I had anassistant teacher who
accompanied me and they helpedto facilitate my classmates
interactions with me.
(15:15):
(beep) Plus, unlike my generaleducation teachers, my Sunday
school teachers had no clue onhow to include someone with a
disability in their lessons.
(beep) So in an ideal situation,I believe Sunday school teachers
could be equipped with theknowledge on how to include
(15:37):
children who have disabilitiesinto their lessons.
(beep) More importantly, beinformed about the individual's
accommodation needs for them toparticipate in lessons.
(beep) Maybe the children in theclass could learn them as well.
(15:58):
(beep) I feel this could havebeen very helpful in my
circumstance.
Jennifer Howell (16:04):
Yes, thank you,
and about the boy, the boy who
befriended you, when you wereabout middle-school age at
church.
You said that he made you feelaccepted and I'm wondering, what
was it that he did that made youcertain that he saw you for more
(16:24):
than your disability?
(beep)
Kate Chapple (16:27):
Honestly, I don't
remember how he went about
befriending me.
(beep) My guess is he might havehad a family member who had a
disability because he was verycomfortable hanging out with me
outside of Sunday school.
I remember that I went to myfirst lock-in at our church
(16:48):
because he could help me withmost of the things that I
require physical assistancewith.
(beep) A lock-in is when yourparents dropped you out about
six o'clock at night, and thenthey didn't pick you until late
the next morning.
(beep) The church staff took thekids to Chucky Cheese Pizza at
(17:09):
one-o'clock in the morning.
(beep) It was only for the kidsfrom our church, who were there.
(beep) I remember having thetime of my life that night for
once in my life, I felt thespirit of God in someone who was
a church goer.
(17:30):
(beep) It gave me hope that Godis in the picture, and church
goers really did live the walkof Jesus.
(beep) However, after he leftthings went back to the same way
for me, being isolated and notincluded in church events.
(beep) I eventually stoppedattending Sunday school, as it
(17:54):
was more harmful than helpful tomy spiritual needs.
Jennifer Howell (17:59):
Oh yes.
Yes.
I can see that.
Well, you mentioned when youwere older in your thirties,
that you had many discussionsand debates, I guess, with your
attendant.
One of the topics was that Godcould take your disability away,
that you would no longer need awheelchair, but you asked maybe
(18:22):
God didn't want you to behealed?
There are many well-meaningChristians who have made others
feel inferior because of theirdisability or maybe less than,
or like there was somethingwrong with them.
What does it feel like to be therecipient of pity or the, the
(18:44):
subject of prayers for you?
Kate Chapple (18:47):
(beep) When people
tell me they will pray for me, I
think to myself, what are theygoing to pray for?
I am pretty well off, yeah, youknow I am not sick with any kind
of illness that I need torecover from.
(19:09):
I have Cerebral Palsy, I reallydo not know a life without it.
From my perspective, the wholenotation of being healed just by
touching Jesus, would be veryunsettling to me.
(beep) I say this, I mean, to bedisabled for all of my life and
(19:30):
suddenly became able to walkwould be a shock to my whole
sense of being.
(beep) I would have to haveserious counseling to cope my
new life.
I know people mean well bypraying for me, however, I feel
it is kind of a cop-out becauseit easier for people to pray
(19:50):
rather than get to know how theycould support me.
Jennifer Howell (19:54):
Oh, that was so
good, very helpful I think.
I mean, that's what this is,this is what this is all about
you know, people, people saidthings to my mom and said things
to me that, they probably had noidea that they were hurting our
feelings or making us angry,they didn't know and so I don't
(20:16):
want to be guilty of that too.
Well, Kate, what you haverevealed today about your
experience has educated us andfor that, we're very grateful.
Your story was so good at makingus think about our words and
actions towards persons withdisabilities, even when we go to
(20:38):
church.
Well, now I know, and I want todo better right now,.
Will you please share with ourlisteners what you are working
on and how they may follow you?
Kate Chapple (20:54):
I am working with
Imagine Art,T for T yeah, but I
don't know if people willunderstand what I say.
Kristen Gooch (21:23):
Kate yeah, I
didn't want to jump in, in the
middle of the interview.
Do you want support with sayingwhat you just said?
Kate Chapple (21:34):
Yeah.
Kristen Gooch (21:36):
Okay.
Kate is working for Training forTransformation at Imagine Art.
She is the point person forChannels for Self Advocacy.
She also has a blog.
Jennifer Howell (21:57):
Thanks again,
Kate,
Kate Chapple (21:59):
Thank you so much
for having me..
Jennifer Howell (22:13):
Okay.
Stay with us for our secondstory, when Dave Chapple shares
his own tale of when he neededto spend time in a nursing home.
I'm inspired by the courageouschoices, he was very courageous,
he had this really difficultdecision to make and he did what
he had to do.
(22:48):
Welcome back to the podcastchanging the world one story at
a time.
We just heard from Kate Chappleand now we will meet her husband
Dave.
Welcome Dave, before you shareyour story with us, would you
please tell our listeners whatwas it that led you to The
(23:09):
Speaking Advocates Program?
Dave Chapple (23:12):
Way back in 2013,
I learned about a new writing
program that VSA(beep) now ArtSpark where the participants,
had the opportunity to becomeself advocates by writing
personal stories.
(beep) This program eventuallybecame Opening Minds, Opening
Doors, and eventually became TheSpeaking Advocates.
Jennifer Howell (23:37):
Thank you so
much.
We cannot wait to hear yourstory.
Dave Chapple (23:56):
Have you ever done
something in your life that you
didn't want to do, but you knewit was for the best?
Or have you ever been confusedabout whether go with your heart
or listen to so-calledprofessionals?
beep) Don't those situationsjust suck?
(beep)(beep) The story I amabout to share is about one of
(24:18):
those situations that I had tolive through, but the outcome
was worth it.
(beep) I moved to Austin fromCleveland in April of 2012, to
be with my fiancée Kate.
(beep) My best friend, Mikedrove me and my two dogs in a
big moving truck across thecountry, with my van being towed
(24:38):
behind.
(beep) Mike said it was likedriving a tank with a white
elephant pulling us from behind?
beep) When I left Ohio, I lostmy Medicaid benefits and I was
told by someone here the fastestway to get(beep) Medicaid was to
go into a nursing home.
(beep) I put off going into thenursing home for about seven
(25:01):
months because people, Kateincluded said there were other
ways for me to get Medicaid.
(beep) This was so veryfrustrating because I was being
pulled in all kinds of differentdirections and I didn't know
whose advice I should take.
I had to ask myself, should I belistening to the love of my
(25:22):
life, Kate, whose advice wasgetting me nowhere fast?
Or should I listen toprofessionals who were pushing
me to do something?
I absolutely dreaded andfrankly, something very scary
for me.
I struggled with this and therewere times I was ready to be
(25:42):
admitted, but literally at thelast minute it was postponed
either because a piece ofpaperwork was missing or due to
my not wanting to be in anursing home during the
holidays.
I was ready to be admitted thebeginning of November, 2012,
thinking I would be out inplenty of time to go on a
(26:03):
Christmas vacation that Kate'sfamily had planned, but I would
find out that wouldn't be thecase and I decided to wait until
after the holidays.
This was becoming a sore topicwith everybody because my life
started to be at a standstilland nothing was moving forward.
Finally, on January 3rd, 2013, Iadmitted myself into a nursing
(26:30):
home.
The other residents were almostall 60 years old, or older.
I was afraid to breathe too hardon them because most looks so
frail a light breeze would knockthem to the ground.
But there were two guys close tomy age and we became friends.
One of them was named Sheldonand when we first met, he was
(26:54):
wearing a big cowboy hat and hekept asking, Kate and me for a
race down the hall in hisbright, new shiny wheelchair.
The other guy was named Rickyand he was shy and quiet at
first.
But when I got to know him, Iquickly found out he was a cool
and interesting guy.
(27:15):
Ricky is a huge Dallas cowboyfan and his room was covered
with Cowboys posters.
The staff was mostly good to me.
I think that was because I had amind and I could not only tell
them my needs, but I could telltheir superiors that they were
doing something wrong.
(27:35):
I had my two favorite aides theyreally cared about the residents
and they made sure I receivedthe care I deserved.
One was a large African Americanguy and he had the kindest heart
and he would do anything for me.
One of my friends nicknamed himthe green mile, because he
(27:55):
reminded her of the John Coffeycharacter from the movie.
The second aide became like alittle brother to Kate and me,
because every time he saw us, hegave us a big hug and he always
took the time to talk it andmake sure everything was going
good.
(beep) When Kate didn't have herattendant, when she was visiting
(28:15):
me, they both helped Kate withdinner and they helped us to sit
on the couch in the living roomso we could have time alone
together.
although these two aides weregreat, there were some bad
apples that were not caring, andI did get some people in
trouble.
(beep) If beep If somebody isunfamiliar with me and they
(28:40):
don't know how I eat.
It is very difficult to feed mebecause sometimes I have trouble
controlling my mouth.
When people don't know better,they think I am playing around
with them.
On this particular day, thestaff was shorthanded and I had
to wait until an aide wasavailable to come and help me.
(29:02):
Of course, the first availableaide never fed me before and she
had no idea how my mouth worked.
People need to be patient andwait for me to open my mouth and
rushing me only makes me morenervous and more spastic.
Well, I could see this woman whowas going to help me was already
(29:23):
stressed because she was talkingto herself in tongues I haven't
heard in my entire life, and shewas hopping around the dining
room, like a Jack rabbit ondrugs.
When I didn't open my mouth, shestarted pushing spoonfuls of
food in my face and the food goteverywhere.
I got pissed off and startedkicking my feet because I
(29:46):
couldn't use my communicationdevice with food being stuffed
in my face.
When, I did that she threw thespoon down and left me.
Many of the staff witnessed theaide's actions and she was
reported.
As a result, she was suspendedand told not to have anything to
(30:08):
do with me for the rest of mystay.
Although I knew I wouldeventually get out of the
nursing home and except for afew incidents I wasn't being
mistreated, it was stillfrustrating to be in there not
knowing how long I had to stay.
Because again, people weretelling me different things
(30:28):
about how long it would take meto get on Medicaid and get the
services I needed.
First, I was told it would justtake 30 days.
I thought to myself, okay.
A month.
Isn't so bad.
Although I was informed the daybefore I was going to be
admitted that my Medicaidapplication wouldn't be
(30:51):
considered until I was in thenursing home for 30 days
straight.
Then it could take another 30 to60 days after that to be
approved for Medicaid and myservices to start.
I was like, what the hell?
However a bright spot was afterthe first 30 days, I was able to
(31:13):
spend some weekends at home withKate.
I am glad to say there is ahappy ending to this long and
painful story.
On April 19th, 2013, Ipermanently went home from the
nursing home after 107 days withmy full Medicaid benefits.
(31:35):
Then forty three days after thatKate and I had our commitment
ceremony when we became partnersfor life.
Jennifer Howell (31:53):
Thank you,
Dave.
Thank you so much.
We really appreciate that youare willing to share your story
with our listeners.
It's so unfortunate anddisappointing that even today,
so many still find themselvesforced to enter a nursing home
(32:16):
in order to qualify for Medicaidbenefits.
It happened decades ago, ithappened to you in 2013 and to
this day, it is still happening.
Fortunately though there hasbeen at the same time, an
increase in types of servicesthat are available, such as a
(32:40):
day-hab care, group homes, otherhome health care options.
Dave, what types of improvementsdo you still hope to see?
Dave Chapple (32:57):
I really hope they
either eliminate or at least
raise the income limits forMedicaid.
beep) Yes.
I do require quite a bit ofattendant care, which I am
reliant on Medicaid to provide.
(beep) However, I don't think itshould prevent me from working
and making a nice living.
Jennifer Howell (33:20):
Yes.
Yes.
I think we all agree.
Now, when you entered thenursing home, you talked about
you were the youngest or one ofthe youngest in the nursing
home.
How did that make you feel to beone of the youngest in your
community?
(33:40):
And, what can you tell us aboutthe stigma and the awkwardness
that might be, experienced bypersons with disabilities who
participate in programs that aredesigned for and marketed to
seniors to two persons over theage of 60 or 65?
Dave Chapple (34:05):
I was fortunate
that there were two other
residents close to my age, so weused to hang out together.
beep) Plus the staff enjoytalking to me because I was
closer to their age than theother residents and gave them
some entertainment and somebodyto vent on when they were
stressed.
(34:26):
beep) As for programs beingdesigned for older people,
actually I never really thoughtabout it because I have been
receiving services since I was18, so it is just something that
helps me to live my life.
Jennifer Howell (34:40):
Okay, thank you
so much Dave.
Thank you for giving us a lookinto your experience.
Your courageous story has notonly inspired us, but maybe
perhaps it's initiated importantconversations about how the
health system and our countryneeds to be improved.
(35:01):
I hope so.
Will you please tell us what youare working on these days.
Dave Chapple (35:08):
Well, I have a
couple of jobs that keep me
pretty busy.
(beep) First I worked for therehabilitation program at
Pennsylvania State University,where currently we are working
on improving communicationbetween individuals who use
communication devices and theirmedical providers.
(35:31):
beep) Then I do Peer Supportwith the Training for
Transformation Program, throughImagine Art.
beep) I am a part of a team thatruns peer support groups over
zoom.
Jennifer Howell (35:45):
Oh, that sounds
like wonderful work.
Thank you so much for all youdo.
And again, we appreciate you somuch for being a guest on our
program.
Beautiful job, Dave.
Thank you.
Dave Chapple (36:00):
beep) Thank you
very much for inviting me.
MsBoye (36:10):
You've been listening to
episode four of The True Tales
by Disability Advocates.
"Love Has No Limits" our bonusepisode in honor of Valentine's
day.
Jennifer Howell (36:21):
Thanks for
listening.
This show was produced byKristen Gooch.
It is edited and mixed by JohnBeer and Ms.
Boye.
Our script and production teamincludes Joey Gidseg and Toby
Al-Trabulsi.
Special, thanks to Kate Chappleand Dave Chapple for appearing.
(36:41):
I'm this week's host JenniferHowell and you've been listening
to the podcast, changing theworld one story at a time.
Don't forget to follow us onTwitter and Instagram.
John Beer (37:00):
All episodes of the
True Tales by Disability
Advocates are free on Applepodcasts, 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 youto learn about The Speaking
(37:20):
Advocates Program.
Sign up for our newsletter atArt Spark, Tx.org.
That's A R T S P A R K T X dot OR G.
The free virtual training isopen to people of all
disabilities, no matter whereyou live.