May 12, 2022 • 25 mins
To listen with full transcript, go to https://truetalesbydisabilityadvocates.buzzsprout.com/
In this episode, host Joey Gidseg talks to Jennifer Howell about her story, “From Ally to Self-Advocate.” Jennifer describes going from being the daughter of parents with disabilities to becoming someone with disabilities of her own, and the surprising things she learns along the way. Even for someone long familiar with disabilities, actually becoming a person with a disability of her own was for Jennifer a through-the-looking-glass kind of experience. Her story sparks an impassioned discussion between Jennifer and Joey, edited by Toby Al-Trabulsi and Ms. Boye, with script and production work by Kristen Gooch and John Beer.
Jennifer Howell
Jennifer Howell's lifetime of personal experience with disability – as a caregiver, teacher and person with disabilities herself – has led to her work as an accessibility and creative placemaking consultant. She is a special education teacher, published author, award-winning artist and online instructor to students around the globe, ages 4 to 94. As an Accessible Yoga Ambassador, she has led classes for over a decade for seniors and persons with disabilities. Her other curricula include hand-lettering and cursive handwriting, and sustainable fashion. Jennifer is a member of IAMPETH (International Assoc. of Master Penmen, Engrossers & Teachers of Handwriting) and the Climate Reality Leadership Corps.
Jennifer can be reached at https://www.linkedin.com/in/jennifer-howell-3179248/
Host
Joey Gidseg
Joey Gidseg
Joey Gidseg is an enthusiast of podcasts and disability policy who works to close the gaps in Access to Justice for disabled Texans. As chair of a statewide disability caucus and former multimedia producer, Joey is thrilled to collaborate with other disabled creators on Art Spark Texas’ podcast, True Tales by Disability Advocates.
You can connect or keep up with Joey on their Facebook, Twitter or Linkedin:
https://www.facebook.com/joeygidsegfortexas/
https://twitter.com/joeyinatx
https://www.linkedin.com/in/joeygidseg/
Learn more about closing the justice gap at https://www.justiceinreach.org/
You can connect or keep up with Joey on their Facebook, Twitter or Linkedin:
https://www.facebook.com/joeygidsegfortexas/
https://twitter.com/joeyinatx
https://www.linkedin.com/in/joeygidseg/
Learn more about closing the justice gap at https://www.justiceinreach.org/
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.
Mark as Played
Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
John Beer (00:09):
Welcome 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
(00:31):
desire to speak out and advocatefor themselves and others.
MsBoye (00:40):
Welcome to"New Normal", Episode, Seven of True Tales by
Disability Advocates.
The podcasts, 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 stories andlived experience of disabled
(01:03):
storytellers.
We offer our unique and oftenunderrepresented perspective to
the growing community of podcastlisteners, worldwide.
According to the CDC, one infour Americans live with some
kind of disability and that'sabout 61 million adults with 61
million experiences and pointsof view about what it means to
(01:25):
live with a disability.
Here Art Spark, Texas werecognize that everyone's life
is enriched by the inclusion ofmultiple voices and we have been
training disability advocates asstorytellers for over 20 years.
In this episode, we have onlyone storyteller, Jennifer
Howell.
While we were recording this itbecame clear to the production
(01:47):
team that the rapport betweenJennifer and host Joey Gidseg,
was giving us a unique windowinto the healing power of
storytelling.
Joey's insight and Jennifer'shonesty and vulnerability reveal
the powerful difference betweenbeing a disability rights ally
and having the lived experienceof disability and growing into
(02:10):
self advocacy.
We hope that the story and theirconversation bring you new
insights and a gently challengesyou to begin your next journey
into self-awareness.
Joey (02:25):
Our guest, Jennifer Howell shares her story"From Ally to
Self-advocate" about growing upin a disabled household as an
able-bodied individual andbecoming disabled later in life.
Welcome Jennifer.
Before you share with us, wouldyou please let our listeners
know what led you to TheSpeaking Advocates Program?
Jennifer (02:44):
Of course.
I was familiar with all thewonderful things that Art Spark
Texas was doing, and then in2020, I learned about The
Speaking Advocates Program aswell.
It's been a goal of mine for awhile now to make advocacy for
persons with disabilities a,topic for blogging and freelance
(03:05):
writing.
So when I learned about TheSpeaking Advocates Program, I
thought,"Hey, public speakingand podcasting are other avenues
for sharing these kinds ofstories." So I got involved.
Joey (03:17):
That sounds like a perfect fit for you Jennifer.
Let's hear your story.
Jennifer, the floor is allyours.
Jennifer (03:25):
Thank you, Joey.
As the daughter of parents withdisabilities, I have always had
a heightened sense of awarenessof the struggles and needs of
those who are disabled.
I adored and respected my momand dad and considered myself to
be extremely sensitive andempathetic of their daily
(03:46):
experience with pain anddiscrimination.
And I was...
to the best of my awareness andunderstanding at the time.
In Dad's case you couldn't tellat first glance that he was a
polio survivor yet after awhile, an observer could easily
see that one leg and foot wereshorter than the other.
(04:07):
I know this affected the way hewas treated at times.
On one hand, there were bullieswho made fun of him.
On the other hand, some peoplereacted with compassion.
There were also the times hewasn't hired for a job or was
pitied because his body wasn't"normal".
My mother's experience wasdifferent.
(04:30):
She had slurred speech andbalance problems.
This was certainly visible toothers, but it was often
misinterpreted.
It was not clear just by lookingthat she had a brain tumor.
So to other people, she did notautomatically fit the label of
disabled more than once someoneasked if my Teetotaller mom had
(04:53):
a drinking problem.
My heart was filled with sadnessand pain at their assumptions
and judgements.
If they only knew.
Even though the two who broughtme into this world spent months
of their life as hospitalpatients and depended on
(05:14):
crutches and wheelchairs to aidtheir mobility.
Even though I had spent alifetime at their side
witnessing their circumstances.
It was not until I beganinhabiting my own disability
that I could start to trulyimagine the world from their
perspective.
I realize my experience ofdisability is more like my mom
(05:38):
probably, in that there issomething visible yet easily,
misinterpreted.
I walk slowly and limp and thelimp tends to get worse the
longer I'm standing or walking.
And urrg! I don't wanna telleveryone I meet,"Hello, I'm
Jennifer.
I have arthritis deformed bones,bone on bone, and I'm in so much
(06:02):
pain that I can barelyconcentrate on this conversation
that I'm trying to have with youright now.
They have no idea that I have amedical diagnosis.
Then I think,"Why should I haveto explain myself?
Make excuses for who I am andhow I move through the world?"
As you can tell, this issomething I'm still coming to
(06:25):
terms with.
As I grow into my new identityas a woman with a disability.
These days, I notice detailsabout the world around me that
did not catch my attentionbefore.
For example, I love the EllenShow, but to the best of my
(06:45):
recollection of all the audiencemembers chosen to play a game on
stage, not one has been in awheelchair or had another
visible disability not evenonce.
And on a weekly basis, Ellen andher sponsors make lavish
(07:07):
donations to single moms withfinancial difficulties, persons
who have survived, naturaldisasters or individuals
battling illnesses, or someother adversity.
Oftentimes these recipients ofher generosity might wheel
themselves across the stage orhave some type of disability.
(07:29):
I'd ask myself and my family."Why is it then that an entire
segment of the population isleft out of the fun games on the
show?" It's incredible to methat someone is groundbreaking
and liberal as Ellen cansimultaneously reinforce such a
Victorian view of disability.
(07:52):
More and more these days Iattend events in which I choose
to sit and wait in the foodcourt or on a bench near the
doorway or in one of thoserecliners at the mall that
massages your back if you insertcoins.
I don't want my friends orfamily members to endure my slow
limp, especially if they're in ahurry.
(08:15):
As I sit there feeling a bitleft out.
I wonder if this new normal iswhat my parents and my friends
with disabilities have beenfeeling all along.
Even though every day I navigatea world, not designed with me in
mind.
I'm not likely to ask foraccommodations.
(08:36):
I mean...
accommodations are for thosepeople with real disabilities.
Not for me.
I'm not that bad.
My disability isn't as bad astheirs.
I'll be fine.
I'm not sure if these thoughtsof mine are internalized
ableism, my resistance to makingan awkward fuss or my use of
(09:00):
denial as a coping strategy.
But I do know that awareness isthe first step towards change.
It's a step I'm willing to take,even though I know it might come
with pain.
It's a step toward learning tobe as good an advocate for
myself as I've been for myfamily and friends all my life.
(09:25):
Yeah.
I'm worthy of that.
MsBoye (09:50):
Here's the conversation between Joey and Jennifer about
her story From Ally to SelfAdvocate."
Joey (10:00):
Jennifer.
What did you learn?
Did you learn, uh, gosh, there'sso much you probably learned,
but what is one thing maybe thatyou feel like you learned as a
child growing up in a disabledhousehold?
Jennifer (10:13):
Well, one thing I think that I've, I'm kind of
observing and analyzing it here,um, in recent years, looking
back that, um, my father handledhis, um, situation, uh, dealt
(10:34):
with his physical disability ina much different way than my
mother.
However they were, they wereboth fiercely independent.
So, uh, I'm sure that that madean impression on me.
But I, I'm learning that we'reall unique and so we are dealing
(10:55):
with our personal situation inthe best way we know how.
And, and each of us differentlybecause we all are unique and
have our own personality.
I know that my dad, uh, he neverreally wanted to bring any
attention to himself or hisdisability.
(11:17):
So I don't, I don't know if itwas really denial.
Um, but that was, that was hisway.
Actually, now that I think aboutit, I think my mom dealt with
hers a lot that way too, not,not as much.
Um, I am seeing now, um, whenI've been asked, uh, the
(11:40):
question why don't I allowothers to give me the same care
and respect and attention that Ihave given to people in my
family and friends, um, who havedisabilities.
(12:03):
What is it that, um, why is itthat I won't allow them to give
me that same care or, err,respect?
And this is something that I'mgoing to have to, ha, think
about.
Probably it's going to take me awhile to work through this and
(12:24):
uh, what my thoughts are aboutit
Joey (12:29):
Jennifer, Jennifer, there's so much there.
There's so much there.
I wanna.
I wanna say that, societycreates so many barriers that
exclude us from so much alreadyand hearing your story about how
(12:50):
you exclude yourself from justenjoying things with your
friends and your family, becauseyou don't want them to know that
you might need accommodationsmakes me feel really sad.
I think if you say to them,"Hey,I wanna walk around.
I want to hang out with y'all.
Can you just walk at my pace?
You know, things for me, they'rea little different than they are
(13:13):
for you, but we can still havefun together.
Just stay by my side, walk at mypace and let's go shop.
Let's go look around." Theydon't know why you don't feel
social or, or like lookingaround like you used to before
you became disabled and theydon't know what's happening.
(13:34):
So I know that they want to be,they want to spend time with you
and they want to be happy withyou because they love you.
And when you give them thatchance, by letting them know,
you're giving them such a gift,because now they know how easy
it is to make inclusion possiblefor someone they love.
(13:57):
And for others, they don't knowyet.
Right?
Jennifer, can I ask, what do youthink would happen if you asked
them or you, you explained thisto them?
Jennifer (14:07):
(Laughs) Well, I'm thinking about it just now, uh,
with you asking me thesequestions.
Um, It's really my own fault.
I'm I mean, talking about thissubject.
Um, I'm sure that my friendswould be more than happy to slow
(14:27):
down for me(laughs).
It's my own fault of, I guess,having too much pride to ask or,
you know, to be honest.
Boy I'm really shared my truefeelings here, but that's really
probably, it's more my own issuethan theirs.
I, I have some really greatfriends and some, and some
(14:53):
people that love me a lot andI'm sure would do anything for
me and would probably be happyto walk at a slower pace.
I, uh, the more I think about itnow, um, I'm sorry that I didn't
give them the opportunity to dothat.
(15:13):
And I'm sorry that I didn't givemyself the opportunity to just
be honest with them, um, that Ihave these needs and that I
can't keep up with them.
Um, I mean, in the, in the paceof walking or, or whatever the
situation is, climbing stairsor, um, whatever is, um, uh,
(15:40):
keeping me from being a part ofcertain activities.
I, I realize now that, um, Ishould have been more open and
honest about, uh, what my...
what I was going through.
Joey (15:57):
Well, you know, you never know until, you know, and this
is a new, this is a new identityfor you.
You're coming into your, yournew identity as a self-advocate.
The point of what I want to sayis you know, like our existence
itself is, is political.
And it's never too late to startto give them that opportunity
(16:18):
and to start letting in your,your friends and your family.
This is the, the easiestaccommodation, right?
You know, to just match yourpace or to just find a different
route or find an accessibleentrance.
It really is a huge gift andyou'll find that people who love
(16:42):
you and care about you, they'llbe more than happy to do that.
Without, without hesitation,right?
And, and even, even more thanthat, um, now in their brains,
they're making that connection.
And then they'll start thinkingabout that and becoming aware of
others, being different from howthey are, and just needing
(17:06):
variations on, you know, whateverybody else has with access,
right?
In the society that's built forthem.
I don't know.
I'm actually kind of excited foryou to try it.
Uh, I think you'll be really, Ithink it'll be a really big, big
thing for you to see howeveryone is there for you.
Um, I'm excited for you.
Jennifer (17:27):
Well, thank you.
Thank you.
I just, I, um, remember at somepoint in time it was just like a
light bulb went off, that Ithought I can't believe that I,
I grew up in a household withpersons with disabilities and
(17:50):
that uh, there was so much, Inever noticed.
There was so much, I never...
I don't know for whatever reasonI wasn't aware of things until I
was experiencing them, myself.
Joey (18:10):
And, you know, Jennifer that's the other thing about
your story that really struck achord with me was, you know, we
always hear people, people whoare not disabled, um, saying,
writing everywhere in our field,everywhere in the disability
field, right?
(18:31):
Saying that they know thedisabled experience.
They know people withdisabilities better than we know
ourselves.
And I think what's sofascinating for me about your
story is that you haven't alwaysbeen disabled.
And so you remember life beforeyou were disabled and now you're
(18:53):
learning life as a, as adisabled self-advocate.
And you've been able to, toexplain and point out this like
really huge gap in, in, uh,knowledge and understanding of
the disabled experience betweendisabled self-advocates and our
allies, right?
(19:13):
Um, and that's huge becausethat's just never talked about.
Uh, so I want to thank you forsharing that because you're the
first actually, and it'svalidating because we see that
it, it it's real and it exists,right?
So....
Jennifer (19:31):
It was almost embarrassing to me that I hadn't
noticed before.
Um, but, it really is differentwhen you are personally
experiencing it, it gets reallydifferent.
And so this was such a bigmoment for me to realize that.
(19:52):
That I really wanted to share itwith other people.
I know that sounds like acontradiction now, from what I'm
saying, I don't, I can't eventell my friends that they need
to walk more slowly.
Um, I don't know, I'm, I'm stillworking through all of this, but
I, I know that I had this momentwhere I felt like I want
(20:13):
everyone to know that the, the,the, the barriers that persons
with disabilities face, um, youknow, just wanting to go to a
restaurant or, or, um,transportation or, or like me
going, er going to the mall andhaving to sit in the food court
(20:37):
because you feel like you justcan't, er, err, it's just too
difficult to maneuver, um, asituation like shopping.
So, um, I've I felt like Iwanted to crusade for that cause
and, um, I'm realizing now thatI'm, I wasn't even crusading for
(21:01):
myself.
Um...
You know, it's really beeneyeopening,
Joey (21:06):
Jennifer.
I would give yourself morecredit because this is, this is
authenticity, right?
That's what this podcast isabout.
This is part of the journey is,is realizing that, you know,
what, if an accommodation makessomething easier for me to
(21:27):
access, then why would I denythat for myself?
If, if something is possible forme and all I have to do is ask
for it and advocate for it, andthere's a chance maybe I'll get
it.
It's always worthwhile becauseit doesn't just impact you.
It impacts the people that arecoming after you, you know?
(21:49):
And, um, Jennifer, what impactdo you hope your story has on
our listeners?
Jennifer (21:56):
Well, many people, myself included may mean well,
but are unaware or oblivious tothe discrimination and ableism
of which they are themselvesparticipants.
Even though no one can fullyunderstand unless they
themselves are disabled.
I'm hoping listeners will take amoment to be more aware and to
(22:20):
follow the lead of the disabledadvocates who are the experts.
Joey (22:25):
Thanks so much, Jennifer, for joining us today and letting
us have a look into yourexperience growing up and as a
self advocate today.
We'd love for you to come backand let us know more about your
journey into self-advocacy.
If people wanted to connect withyou, what is the best way for
them to do that?
Jennifer (22:46):
Well, err, thank you.
I, um, I'd like to refer them tomy LinkedIn, Jennifer Howell, H
O W E L L.
And thank you all so much.
Joey (23:02):
Thank you!
MsBoye (23:08):
Thanks for listening to this episode of The True Tales
by Disability Advocates.
If you were touched by theissues covered in this episode,
please share your experiencewith us on our True Tales
Podcast, Facebook page.
"New Normal" was hosted by JoeyGidseg and produced by Jon Beer,
edited and mixed by me.
Ms.
Boye.
(23:29):
Special thanks to JenniferHowell for being our guest for
this episode.
The script and production teamalso includes Kristen Gooch and
Toby Al-Trabulsi.
John Beer is the voice of thepodcast intro and outro.
I'm MsBoye the coordinator ofThe Speaking Advocates Program
at Art Spark, Texas, where ourgoal is to spark the creative in
(23:51):
everyone.
This has been Episode Seven ofTrue Tales by Disability
Advocates, and if you enjoyedthe show, please share it with
your friends and allies.
And of course, don't forget tofollow us on Facebook,
Instagram, Tik-Tok and Twitterfor details of future episodes.
John Beer (24:13):
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
(24:34):
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.
Welcome 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
(00:31):
desire to speak out and advocatefor themselves and others.
MsBoye (00:40):
Welcome to"New Normal", Episode, Seven of True Tales by
Disability Advocates.
The podcasts, 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 stories andlived experience of disabled
(01:03):
storytellers.
We offer our unique and oftenunderrepresented perspective to
the growing community of podcastlisteners, worldwide.
According to the CDC, one infour Americans live with some
kind of disability and that'sabout 61 million adults with 61
million experiences and pointsof view about what it means to
(01:25):
live with a disability.
Here Art Spark, Texas werecognize that everyone's life
is enriched by the inclusion ofmultiple voices and we have been
training disability advocates asstorytellers for over 20 years.
In this episode, we have onlyone storyteller, Jennifer
Howell.
While we were recording this itbecame clear to the production
(01:47):
team that the rapport betweenJennifer and host Joey Gidseg,
was giving us a unique windowinto the healing power of
storytelling.
Joey's insight and Jennifer'shonesty and vulnerability reveal
the powerful difference betweenbeing a disability rights ally
and having the lived experienceof disability and growing into
(02:10):
self advocacy.
We hope that the story and theirconversation bring you new
insights and a gently challengesyou to begin your next journey
into self-awareness.
Joey (02:25):
Our guest, Jennifer Howell shares her story"From Ally to
Self-advocate" about growing upin a disabled household as an
able-bodied individual andbecoming disabled later in life.
Welcome Jennifer.
Before you share with us, wouldyou please let our listeners
know what led you to TheSpeaking Advocates Program?
Jennifer (02:44):
Of course.
I was familiar with all thewonderful things that Art Spark
Texas was doing, and then in2020, I learned about The
Speaking Advocates Program aswell.
It's been a goal of mine for awhile now to make advocacy for
persons with disabilities a,topic for blogging and freelance
(03:05):
writing.
So when I learned about TheSpeaking Advocates Program, I
thought,"Hey, public speakingand podcasting are other avenues
for sharing these kinds ofstories." So I got involved.
Joey (03:17):
That sounds like a perfect fit for you Jennifer.
Let's hear your story.
Jennifer, the floor is allyours.
Jennifer (03:25):
Thank you, Joey.
As the daughter of parents withdisabilities, I have always had
a heightened sense of awarenessof the struggles and needs of
those who are disabled.
I adored and respected my momand dad and considered myself to
be extremely sensitive andempathetic of their daily
(03:46):
experience with pain anddiscrimination.
And I was...
to the best of my awareness andunderstanding at the time.
In Dad's case you couldn't tellat first glance that he was a
polio survivor yet after awhile, an observer could easily
see that one leg and foot wereshorter than the other.
(04:07):
I know this affected the way hewas treated at times.
On one hand, there were bullieswho made fun of him.
On the other hand, some peoplereacted with compassion.
There were also the times hewasn't hired for a job or was
pitied because his body wasn't"normal".
My mother's experience wasdifferent.
(04:30):
She had slurred speech andbalance problems.
This was certainly visible toothers, but it was often
misinterpreted.
It was not clear just by lookingthat she had a brain tumor.
So to other people, she did notautomatically fit the label of
disabled more than once someoneasked if my Teetotaller mom had
(04:53):
a drinking problem.
My heart was filled with sadnessand pain at their assumptions
and judgements.
If they only knew.
Even though the two who broughtme into this world spent months
of their life as hospitalpatients and depended on
(05:14):
crutches and wheelchairs to aidtheir mobility.
Even though I had spent alifetime at their side
witnessing their circumstances.
It was not until I beganinhabiting my own disability
that I could start to trulyimagine the world from their
perspective.
I realize my experience ofdisability is more like my mom
(05:38):
probably, in that there issomething visible yet easily,
misinterpreted.
I walk slowly and limp and thelimp tends to get worse the
longer I'm standing or walking.
And urrg! I don't wanna telleveryone I meet,"Hello, I'm
Jennifer.
I have arthritis deformed bones,bone on bone, and I'm in so much
(06:02):
pain that I can barelyconcentrate on this conversation
that I'm trying to have with youright now.
They have no idea that I have amedical diagnosis.
Then I think,"Why should I haveto explain myself?
Make excuses for who I am andhow I move through the world?"
As you can tell, this issomething I'm still coming to
(06:25):
terms with.
As I grow into my new identityas a woman with a disability.
These days, I notice detailsabout the world around me that
did not catch my attentionbefore.
For example, I love the EllenShow, but to the best of my
(06:45):
recollection of all the audiencemembers chosen to play a game on
stage, not one has been in awheelchair or had another
visible disability not evenonce.
And on a weekly basis, Ellen andher sponsors make lavish
(07:07):
donations to single moms withfinancial difficulties, persons
who have survived, naturaldisasters or individuals
battling illnesses, or someother adversity.
Oftentimes these recipients ofher generosity might wheel
themselves across the stage orhave some type of disability.
(07:29):
I'd ask myself and my family."Why is it then that an entire
segment of the population isleft out of the fun games on the
show?" It's incredible to methat someone is groundbreaking
and liberal as Ellen cansimultaneously reinforce such a
Victorian view of disability.
(07:52):
More and more these days Iattend events in which I choose
to sit and wait in the foodcourt or on a bench near the
doorway or in one of thoserecliners at the mall that
massages your back if you insertcoins.
I don't want my friends orfamily members to endure my slow
limp, especially if they're in ahurry.
(08:15):
As I sit there feeling a bitleft out.
I wonder if this new normal iswhat my parents and my friends
with disabilities have beenfeeling all along.
Even though every day I navigatea world, not designed with me in
mind.
I'm not likely to ask foraccommodations.
(08:36):
I mean...
accommodations are for thosepeople with real disabilities.
Not for me.
I'm not that bad.
My disability isn't as bad astheirs.
I'll be fine.
I'm not sure if these thoughtsof mine are internalized
ableism, my resistance to makingan awkward fuss or my use of
(09:00):
denial as a coping strategy.
But I do know that awareness isthe first step towards change.
It's a step I'm willing to take,even though I know it might come
with pain.
It's a step toward learning tobe as good an advocate for
myself as I've been for myfamily and friends all my life.
(09:25):
Yeah.
I'm worthy of that.
MsBoye (09:50):
Here's the conversation between Joey and Jennifer about
her story From Ally to SelfAdvocate."
Joey (10:00):
Jennifer.
What did you learn?
Did you learn, uh, gosh, there'sso much you probably learned,
but what is one thing maybe thatyou feel like you learned as a
child growing up in a disabledhousehold?
Jennifer (10:13):
Well, one thing I think that I've, I'm kind of
observing and analyzing it here,um, in recent years, looking
back that, um, my father handledhis, um, situation, uh, dealt
(10:34):
with his physical disability ina much different way than my
mother.
However they were, they wereboth fiercely independent.
So, uh, I'm sure that that madean impression on me.
But I, I'm learning that we'reall unique and so we are dealing
(10:55):
with our personal situation inthe best way we know how.
And, and each of us differentlybecause we all are unique and
have our own personality.
I know that my dad, uh, he neverreally wanted to bring any
attention to himself or hisdisability.
(11:17):
So I don't, I don't know if itwas really denial.
Um, but that was, that was hisway.
Actually, now that I think aboutit, I think my mom dealt with
hers a lot that way too, not,not as much.
Um, I am seeing now, um, whenI've been asked, uh, the
(11:40):
question why don't I allowothers to give me the same care
and respect and attention that Ihave given to people in my
family and friends, um, who havedisabilities.
(12:03):
What is it that, um, why is itthat I won't allow them to give
me that same care or, err,respect?
And this is something that I'mgoing to have to, ha, think
about.
Probably it's going to take me awhile to work through this and
(12:24):
uh, what my thoughts are aboutit
Joey (12:29):
Jennifer, Jennifer, there's so much there.
There's so much there.
I wanna.
I wanna say that, societycreates so many barriers that
exclude us from so much alreadyand hearing your story about how
(12:50):
you exclude yourself from justenjoying things with your
friends and your family, becauseyou don't want them to know that
you might need accommodationsmakes me feel really sad.
I think if you say to them,"Hey,I wanna walk around.
I want to hang out with y'all.
Can you just walk at my pace?
You know, things for me, they'rea little different than they are
(13:13):
for you, but we can still havefun together.
Just stay by my side, walk at mypace and let's go shop.
Let's go look around." Theydon't know why you don't feel
social or, or like lookingaround like you used to before
you became disabled and theydon't know what's happening.
(13:34):
So I know that they want to be,they want to spend time with you
and they want to be happy withyou because they love you.
And when you give them thatchance, by letting them know,
you're giving them such a gift,because now they know how easy
it is to make inclusion possiblefor someone they love.
(13:57):
And for others, they don't knowyet.
Right?
Jennifer, can I ask, what do youthink would happen if you asked
them or you, you explained thisto them?
Jennifer (14:07):
(Laughs) Well, I'm thinking about it just now, uh,
with you asking me thesequestions.
Um, It's really my own fault.
I'm I mean, talking about thissubject.
Um, I'm sure that my friendswould be more than happy to slow
(14:27):
down for me(laughs).
It's my own fault of, I guess,having too much pride to ask or,
you know, to be honest.
Boy I'm really shared my truefeelings here, but that's really
probably, it's more my own issuethan theirs.
I, I have some really greatfriends and some, and some
(14:53):
people that love me a lot andI'm sure would do anything for
me and would probably be happyto walk at a slower pace.
I, uh, the more I think about itnow, um, I'm sorry that I didn't
give them the opportunity to dothat.
(15:13):
And I'm sorry that I didn't givemyself the opportunity to just
be honest with them, um, that Ihave these needs and that I
can't keep up with them.
Um, I mean, in the, in the paceof walking or, or whatever the
situation is, climbing stairsor, um, whatever is, um, uh,
(15:40):
keeping me from being a part ofcertain activities.
I, I realize now that, um, Ishould have been more open and
honest about, uh, what my...
what I was going through.
Joey (15:57):
Well, you know, you never know until, you know, and this
is a new, this is a new identityfor you.
You're coming into your, yournew identity as a self-advocate.
The point of what I want to sayis you know, like our existence
itself is, is political.
And it's never too late to startto give them that opportunity
(16:18):
and to start letting in your,your friends and your family.
This is the, the easiestaccommodation, right?
You know, to just match yourpace or to just find a different
route or find an accessibleentrance.
It really is a huge gift andyou'll find that people who love
(16:42):
you and care about you, they'llbe more than happy to do that.
Without, without hesitation,right?
And, and even, even more thanthat, um, now in their brains,
they're making that connection.
And then they'll start thinkingabout that and becoming aware of
others, being different from howthey are, and just needing
(17:06):
variations on, you know, whateverybody else has with access,
right?
In the society that's built forthem.
I don't know.
I'm actually kind of excited foryou to try it.
Uh, I think you'll be really, Ithink it'll be a really big, big
thing for you to see howeveryone is there for you.
Um, I'm excited for you.
Jennifer (17:27):
Well, thank you.
Thank you.
I just, I, um, remember at somepoint in time it was just like a
light bulb went off, that Ithought I can't believe that I,
I grew up in a household withpersons with disabilities and
(17:50):
that uh, there was so much, Inever noticed.
There was so much, I never...
I don't know for whatever reasonI wasn't aware of things until I
was experiencing them, myself.
Joey (18:10):
And, you know, Jennifer that's the other thing about
your story that really struck achord with me was, you know, we
always hear people, people whoare not disabled, um, saying,
writing everywhere in our field,everywhere in the disability
field, right?
(18:31):
Saying that they know thedisabled experience.
They know people withdisabilities better than we know
ourselves.
And I think what's sofascinating for me about your
story is that you haven't alwaysbeen disabled.
And so you remember life beforeyou were disabled and now you're
(18:53):
learning life as a, as adisabled self-advocate.
And you've been able to, toexplain and point out this like
really huge gap in, in, uh,knowledge and understanding of
the disabled experience betweendisabled self-advocates and our
allies, right?
(19:13):
Um, and that's huge becausethat's just never talked about.
Uh, so I want to thank you forsharing that because you're the
first actually, and it'svalidating because we see that
it, it it's real and it exists,right?
So....
Jennifer (19:31):
It was almost embarrassing to me that I hadn't
noticed before.
Um, but, it really is differentwhen you are personally
experiencing it, it gets reallydifferent.
And so this was such a bigmoment for me to realize that.
(19:52):
That I really wanted to share itwith other people.
I know that sounds like acontradiction now, from what I'm
saying, I don't, I can't eventell my friends that they need
to walk more slowly.
Um, I don't know, I'm, I'm stillworking through all of this, but
I, I know that I had this momentwhere I felt like I want
(20:13):
everyone to know that the, the,the, the barriers that persons
with disabilities face, um, youknow, just wanting to go to a
restaurant or, or, um,transportation or, or like me
going, er going to the mall andhaving to sit in the food court
(20:37):
because you feel like you justcan't, er, err, it's just too
difficult to maneuver, um, asituation like shopping.
So, um, I've I felt like Iwanted to crusade for that cause
and, um, I'm realizing now thatI'm, I wasn't even crusading for
(21:01):
myself.
Um...
You know, it's really beeneyeopening,
Joey (21:06):
Jennifer.
I would give yourself morecredit because this is, this is
authenticity, right?
That's what this podcast isabout.
This is part of the journey is,is realizing that, you know,
what, if an accommodation makessomething easier for me to
(21:27):
access, then why would I denythat for myself?
If, if something is possible forme and all I have to do is ask
for it and advocate for it, andthere's a chance maybe I'll get
it.
It's always worthwhile becauseit doesn't just impact you.
It impacts the people that arecoming after you, you know?
(21:49):
And, um, Jennifer, what impactdo you hope your story has on
our listeners?
Jennifer (21:56):
Well, many people, myself included may mean well,
but are unaware or oblivious tothe discrimination and ableism
of which they are themselvesparticipants.
Even though no one can fullyunderstand unless they
themselves are disabled.
I'm hoping listeners will take amoment to be more aware and to
(22:20):
follow the lead of the disabledadvocates who are the experts.
Joey (22:25):
Thanks so much, Jennifer, for joining us today and letting
us have a look into yourexperience growing up and as a
self advocate today.
We'd love for you to come backand let us know more about your
journey into self-advocacy.
If people wanted to connect withyou, what is the best way for
them to do that?
Jennifer (22:46):
Well, err, thank you.
I, um, I'd like to refer them tomy LinkedIn, Jennifer Howell, H
O W E L L.
And thank you all so much.
Joey (23:02):
Thank you!
MsBoye (23:08):
Thanks for listening to this episode of The True Tales
by Disability Advocates.
If you were touched by theissues covered in this episode,
please share your experiencewith us on our True Tales
Podcast, Facebook page.
"New Normal" was hosted by JoeyGidseg and produced by Jon Beer,
edited and mixed by me.
Ms.
Boye.
(23:29):
Special thanks to JenniferHowell for being our guest for
this episode.
The script and production teamalso includes Kristen Gooch and
Toby Al-Trabulsi.
John Beer is the voice of thepodcast intro and outro.
I'm MsBoye the coordinator ofThe Speaking Advocates Program
at Art Spark, Texas, where ourgoal is to spark the creative in
(23:51):
everyone.
This has been Episode Seven ofTrue Tales by Disability
Advocates, and if you enjoyedthe show, please share it with
your friends and allies.
And of course, don't forget tofollow us on Facebook,
Instagram, Tik-Tok and Twitterfor details of future episodes.
John Beer (24:13):
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
(24:34):
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.
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