June 17, 2023 • 45 mins
Storyteller Renée Lopez has lived a life of activism, challenging disability stereotypes, and deep friendships. She returns to True Tales with a new story "Me, Myself, and Sandra" about her experience as a Freshman at UT Austin. Host Kristen Gooch and Renée chat about Renée’s passion for social justice and her 40 years of Activism, fighting for Liberty and Justice for all. Their discussion covers what Renée’s learned about self-advocacy, to her understanding of government oppression, her fight for accessible housing to her support of Black Lives Matter, as well as the importance of self-care and the power of friendships over 60 and becoming your own version of the Red Hat Ladies.
Guest Renee Lopez
I am a 61-year-old woman with a physical disability (I use a wheelchair).
I was born and raised in Austin, Texas. I have lived here my entire life.
I graduated from the University of Texas in 1984 and 1986 with a BA and an M.Ed. respectively. I worked for the State of Texas for 30 years and am now retired. I have a long history of advocating for the rights of people with disabilities since 1982 as a student at The University of Texas. As a student with a life-long physical disability, I joined other students with disabilities for campus accessibility. I continue to advocate to this day.
I have been on the Advisory Board for SAFE Disability Services since 2010. I have attended conferences on behalf of SAFE as a workshop presenter teaching and informing conference attendees on issues of violence and abuse against persons with Disabilities. I am also a member of a core group of a coalition put together by the VERA Institute of Justice on ending violence against people with disabilities.
Social media: https://www.facebook.com/renee.lopez.31945
Renee’s Accessible Housing video - AHA Renee Lopez Accessibility Home Tour
"How Lucky" by Will Leitch
Host Kristen Gooch
Kristen Gooch is an Actress, Poet, and Advocate from Austin, Tx with Cerebral Palsy and uses a wheelchair for mobility. She hopes to broaden her horizons and branch out into film and television someday. She currently facilitates a peer support group called Adapting Sheros for women with mobility disabilities through Imagineart. She is a company member of TILT Performance Group and the Paradox Players.
Music Credits
- Music by Scandinavianz from Pixabay
- chikumbumtima-16488 pixabay.com
- intro-effect-music-112907 pixabay.com
- Isn't Life Amazing -BBMusic Pixabay.com
- short-ukulele-jingle-cheerful-happy-and-bright-148415 Music by ShidenBeatsMusic from Pixabay
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Transcript
Episode Transcript
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Kamand (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.
MsBoye (00:34):
You are listening to True Tales by Disability
Advocates, season two.
The Podcast where Advocatesharness the power of
storytelling to build communitywith their peers and hope to
develop empathy in others.
Recognizing that everyone's lifeis enriched by the inclusion of
multiple voices, Art Spark Texashas been training Disability
Advocates as storytellers forover 20 years.
(00:56):
A team of these DisabilityAdvocates creates True Tales to
give Disabled Storytellers theopportunity to share their
personal stories and livedexperience in their authentic
voices.
We offer our unique and oftenunderrepresented perspective to
the growing community of podcastlisteners worldwide.
MsBoye Live Radio (01:15):
Sit back an enjoy this episode,"From
Self-Advocate to Red Hat Lady",featuring host Kristen Gooch and
Storyteller Renee Lopez.
Kristen (01:33):
Welcome to True Tales by Disability Advocates, the
podcast where we change theworld one story at a time.
I'm Kristen Gooch, and I'm yourhost.
I'm here today with storytellerRenée Lopez, who will be sharing
her story,"Me, Myself, andSandra." Hi Renée, how's it
(01:57):
going?
Renée (01:58):
Pretty good.
Pretty good.
I just got home about 20 minutesago and I'm, I'm good to go.
Kristen (02:05):
I'm so excited that you're back for Season Two.
I'm so happy you're here andthat I get to interview you this
time.
Our listeners may remember yourstory,"Witchy Woman" from Season
One, and it was great and Ican't wait for them to hear this
(02:27):
next story.
Renée (02:29):
Well, thank you.
I'm excited to be here.
Kristen (02:32):
Renée, I don't wanna give away anything about your
story before our listeners get achance to hear it.
But with that being said, Ithink it's really important that
all young adults withdisabilities and their parents,
guardians, other family membersget to hear it as well.
Renée (02:53):
Thank you.
I'm, I'm happy to share it.
I feel like I've learned a lotand, and I like sharing that
with others that are younger(laughs)
Kristen (03:01):
What inspired you to write it?
Renée (03:03):
Well, um, I was taking, um, OMOD, which is Opening Minds
Opening Doors, and where wewrote stories about our lives.
And, um, I was just rememberingthe experience I had when I
first had to have an Attendantand I thought that would make an
interesting story because, um,what transpired is really what
(03:25):
changed me into, uh, well, itmatured me, let me put it that
way.
And I learned about myself andwhat my needs were and thought
it was something, um, I could,others could use as well.
Kristen (03:37):
I agree.
So, we can't wait to hear yourstory.
Renée (03:47):
I'm Renée Lopez and this is my story.
It's titled"Me, Myself, andSandra" But first I wanna give
you a couple of definitions.
The first word, noun, Victim (03:58):
A person harmed, injured, or
killed as a result of a crimeaccident, or other event or
action.
Synonyms are (04:09):
sufferer, injured, party, casualty, loser, prey,
stooge, dupe, sucker, fool,chump.
The second word I want you toremember is also a noun, Victor:
a person who defeats an enemy oropponent in a battle game or
(04:31):
other competition.
winner, champion, conqueror, conquering hero,
vanquisher, hero.
Up until I went to college, allmy physical needs were taken
care of on my family or thestaff and aides at the
hospitals, schools and rehabcenters I went to.
(04:52):
But when I went to University ofTexas as a freshman in 1980, I
had to live in a dorm.
All freshmen had to, unless likeme, your family lived in Austin
and you could opt to live athome.
But eager to be independent.
I chose to live in Jester dorm.
My dorm room was very small withtwo pull-out beds, two small
(05:12):
desks, a sink, two small closetsand a community bathroom down
the hall.
It felt like a shoebox or a jailcell! It was then, that freshman
year that I found out I had tohire my own live-in Attendant.
Well, how in the world do you dothat?
I had never done this before andhad no clue as to how, how to go
(05:36):
about doing it.
I guess I thought an Attendantwould magically appear and
instinctively know what to dofor me.
I received two Attendantreferrals from Disabled Student
Services, but it was up to me tointerview and hire.
I interviewed the two referralswith my mother and chose a young
woman who seemed very mature andwas a hairstylist by trade.
(05:59):
I could just imagine all thehairdo's she could do to my
hair.
How cool was that?
The night before we were to moveinto the dorm, my mother
received a call from this maturehairstylist.
She had changed her mind aboutgoing to UT and she was so
sorry, but she was going back toher boyfriend in Arkansas.
My mother didn't tell me tillmorning, she wanted me to go
(06:21):
ahead and sleep for the night.
But when I got up, panic ensued.
I quickly called the otherreferral that I had turned down
to ask her if she was stillinterested in the job.
She emphatically said,"No!" ThenI heard laughter in the
background.
It turned out she was friendswith the other girls on my
(06:42):
floor, and I had made the bigmistake of not hiring her and
her friends were now against me.
Great start to college.
At the 11th hour, I get areferral named Esther, and I
hire her on the spot.
I move into the dorm with Estheras my roommate, Attendant, and
with enemies all around me.
(07:04):
From the very beginning, Ididn't like Esther.
She had never been an Attendantand didn't take my needs
seriously, you know, the way mymother did.
She was also a music major,majoring in the oboe, which was
really annoying to me when shepracticed in the shoebox of our
room.
You can imagine what I wantedher to do with that oboe! On top
(07:26):
of being shy, I was also afraidto venture out because of the
"Mean Girls" all around me.
Those bitches.
I became lonely and reclusive.
Esther made friends with thegirls in the dorm and had a
boyfriend within weeks.
I hated her.
My biggest emotional growthspurt occurred when I got to my
(07:48):
dorm room late one night.
I was expecting Esther to bethere waiting for me, but she
wasn't.
I wondered where she could be at11:30 at night.
I piddled around the dorm roomwaiting.
By 1:00 AM she still wasn'tthere.
2:00 AM, nada! I was starting topanic.
It was not too late to call mymom.
(08:10):
Not that I wanted to, because Ididn't want to hear the,"I knew
this was gonna happen!" And the,"I told you so!" Actually it was
too late to call anyone at thatungodly hour.
Except my friend Sandra.
Sandra had Cerebral Palsy, wasthree years older than me and
lived independently in her ownapartment.
(08:31):
So she knew the score.
First, she let me cry and helpedme calm down so that I could
think.
I remembered bringing mydressing stick and other
assistive devices.
But in the dorm, as at home,they were in the closet
collecting dust.
I took them out of the closetand with Sandra on the phone
supporting me all the way, threehours later, I got out of my leg
(08:54):
braces and my clothes and intomy nightgown.
By 5:00 AM I was ready for bed,Sandra and I hung up.
I turned out the light and gotinto bed.
I felt strangely different.
I had a smile on my face.
I had done it.
I had taken care of myself.
(09:15):
I realized that I will alwaysneed an Attendant, but that
night I went from Victim toVictor.
Kristen (09:51):
Welcome back.
I'm here with Renée Lopez.
Renée thanks for sharing yourstory with us today.
I find your story veryrelatable.
It highlights the importance ofadvocating for your own specific
needs and having access to astrong support network while
(10:13):
transitioning from high schoolto college.
I know that it can be excitinggoing off to college and living
in a dorm or living on your ownfor the first time.
But it can also be very nervewracking.
And I also know, from personalexperience, 18 and 19 year old
(10:34):
girls, they're adults, but stillimmature.
And as a result of that can bereally bitchy, sometimes.
And it can also be, well, it'sdifficult for all college
freshman starting out, butespecially when you have a
Disability.
There's more to think about,your academic accommodations and
(11:00):
also finding an Attendant tohelp you with your habilitation
needs, your a, your, uh, ADLsactivities of daily living, and
the university doesn't providethat for you.
Um, I know that your experiencehappened in 1980 and things are
(11:22):
better now, but it's still anissue.
If you had a teenage daughter ora niece going off to college,
what advice would you give her?
Renée (11:36):
Err, yeah, Kristen, this, this happened back in the 1980s.
Uh, and certainly campuses aremuch better now and, and
certainly more accessible.
Um, but I think, uh, teenagersor, you know, young adults, I
guess are probably pretty muchthe same as they were in 1980.
Um, if I had a teenage daughter,and I do have nieces actually,
(12:00):
that are starting college thisyear in September.
My advice to, they're notdisabled, but my advice to them
is, um, to, uh, be yourself andnot be afraid to speak up and,
um, you know, to, uh, to havefaith and trust in the whole
process.
Um, if I had a disabled, uh,daughter or niece, I would
(12:24):
definitely teach her to, uh,speak up and to know what her
needs are because, I think whathappened with me was that, um,
my, my family unintentionallyand including school, uh, and
rehab hospitals, they never,they just took care of your
needs because that was theirjob.
(12:46):
But I was never taught to askfor what I need.
So I went to college assumingthat people were just gonna know
what to do and um, so that was,that was the biggest lesson for
me was that I had to figure outwhat are my needs, uh, what do I
need to have done, what are myexpectations, and be able to,
(13:08):
uh, express that to an Attendantso that we have better
communication and that my needsare met.
And that's, that's one of thethings that would change now.
Kristen (13:20):
Great! Um, I know for me personally, when I graduated
from high school in 2003, peopletold me ahead of time that, oh,
"You need to be your ownAdvocate.
You need to speak up." And it'snot that I didn't believe'em and
I started doing that when I wasin high school, but it's a lot
(13:42):
different when people tell youthat, versus you find yourself
in that situation and it becomesvery real.
Renée (13:52):
Yeah, it does, and I, I wanted to tell you too, that's
funny that you started, uh,understanding the word Advocate
at a much younger age than Idid.
I didn't even know what anAdvocate was when I went to
college.
And, um, I, I think that the bigdifference between when I went
to school and the people that goto school now, is that they are
(14:13):
learning at a younger age how tobe more aware of their needs
themselves in society.
And when I was growing up, itwas still assumed that, um,
yeah, okay, I was going tocollege, but I was probably
always gonna have to be takencare of by family members.
And so it probably, it justnever occurred to anybody to
teach me about Advocacy or SelfAdvocacy.
Kristen (14:38):
Yeah very true.
Um, well, another interestingthing that I had that taught me
that I really needed to Advocatefor myself, is my sophomore
year, my one-on-onepara-professional was actually a
paraplegic, uh, her name wasAmanda.
(14:59):
So she really, um, she was like,"No, you need to tell people
exactly what you need.
You know, even if it's somethingas simple as taking something
out of your backpack so that youcan hand in your assignments,
nobody's gonna immediately dothat for you.
So always speak up."
Renée (15:19):
Right, exactly.
Kristen (15:20):
So, Last year I started a peer support group for women
with disabilities, uh, womenwith Mobility Disabilities
called"Adapting Shero's." Um,where we get together and, you
know, non-judgmental, uh, safe,relaxed environment, and we talk
(15:45):
about what's going on in ourlives and about different
strategies of handling thingswhen you have a Mobility
Disability.
Like uh, dressing, putting onmakeup, um, therapies, sharing
stories like that.
It seems like your friend,Sandra, she...
(16:07):
Was she like that for you?
Did she help you learn like someof the tricks of the trade, so
to speak?
Renée (16:15):
Oh yeah, she definitely did.
She was, uh, she was veryindependent and I really admired
that, and I wanted to be likeher.
I, I couldn't wait to have myown apartment and have a job and
drive a car and everything shewas doing, and I just was, you
know, like,"I wanna be likeSandra".
And um, but at the time nobodyelse said, you can be like
(16:39):
Sandra.
So, um, I wasn't sure, but youknow, I would, I hung around her
quite a bit and um, you know, Iwas able to watch and see how
she did things and how she spokeup and how she didn't, she
didn't take anything lying down.
And, uh, even though I was veryquiet at the time and in the
(17:00):
background, most of the time, Ireally.
I think I learned a whole lot byher and I've always been very
grateful to have her in my life.
Kristen (17:09):
So how did y'all meet?
Renée (17:12):
Sandra and I met in elementary school.
Uh, we were both in SpecialEducation at Go Valley
Elementary.
Uh, back in the sixties, uh,Special Education included
everybody regardless of yourDisability, and, uh, she and I
were in class, uh, in the sameclass and we just became
(17:34):
friends, you know, from a veryyoung age.
Kristen (17:37):
Sure.
Do y'all still keep in touch?
Renée (17:40):
Uh, yes, we do.
Uh, we don't hang out as muchanymore, I live in Austin and
she lives in San Antonio.
And, uh, because we're, we'vegotten so much older, we're in
our sixties...
Kristen (17:53):
mm-hmm.
Renée (17:53):
...um, it's, it's a lot more difficult for us to travel
and get around and, um, I can'tgo spend the night at her house
like I used to.
And, uh, she doesn't driveanymore.
So, uh, but we do keep in touchnow and then.
Kristen (18:09):
Well, that's good.
She seemed like a really specialfriend.
Renée (18:16):
Yeah, she, she was and she still is.
Kristen (18:19):
Yeah.
So, I know that this is, or thatthis was a painful experience
with dealing with Esther, theannoying roommate, and...
Renée (18:33):
(Renée laughs)
Kristen (18:35):
...having, you know, the Attendant that you, well,
having someone who you thoughtwas gonna be your Attendant.
Um, and give you all kinds offabulous hair styles.
Um, I would've hired that personat 18 myself, um,
Renée (18:52):
(Renée Laughs)
Kristen (18:54):
But what did you learn from that?
Renée (18:59):
Well, you know, in hindsight, I think it was
probably one of the best thingsthat ever happened.
Um, yeah, it would've been greatto have somebody doing my hair
and makeup and all that and,and, you know, um, looking
pretty, I guess.
But, but I don't know that Iwould've learned anything, uh,
about being on my own.
And, um, so, you know, lifeknows what it's doing and it
(19:25):
turns out that Esther was thebest thing for me.
Now I look back on it and I'mreally grateful to her.
She, it really wasn't her faultthat she wasn't a very good
Attendant.
Um, it was my fault for havingthe assumption that Attendants
were gonna be like my mom andanticipate my every need and
(19:46):
just take care of me and love meand hold my hand.
And, you know, and it was a, arude awakening to find out that,
uh, people are not like that andthey're not gonna do that and
they really shouldn't.
Um, I was, I was an 18 year old,and, but I still thought I was
like six, you know?
(20:06):
And, uh, so I grew up reallyfast in that semester, uh,
having Esther as my Attendant.
And, uh, over the years Ilearned how to speak up for
myself and how to, um, you know,uh, know what my needs are and,
and how to make them, you know,how to meet those needs.
(20:27):
And, uh, at the same time, youknow, being friendly with your
Attendant, it wasn't necessaryto, uh, always be friends with
them.
Uh, sometimes the lines can getblurred and it's, it's good to
have a, a, like a boundary whereyour Attendant always knows that
she's hired to take care of youand, uh, not, not so much to,
(20:53):
uh, be there to tell you how tolive your life.
Um, usually what I look for ina, in an Attendant, uh, one of
the things I ask is, um, forpunctuality and, uh, when I was
working, I worked for 30 yearsfor the state of Texas, and it
was very, very important that,uh, my Attendant be punctual
(21:14):
because I had to be at work at acertain time.
So one of the things I alwayssaid, like,"You must be on time.
You have to be here at seveno'clock because you need to get
me dressed and I have to be atwork by nine." And and you know,
also, um, the boundaries where,uh, I want my food cooked, for
example, the way I want to eatit and not the way you want to
(21:37):
eat it.
Um, so I give the example whereI had an Attendant once that for
some reason she loves salt andshe over salted everything.
And, uh, whenever I have toomuch salt, well my feet swell
and stuff.
So I started telling her, pleasedon't put any salt in.
And she goes,"Yeah, but that'show I like'em." And I said,
(21:57):
"Well, yeah, I know that's howyou like'em, but I'm the one
eating'em, so please don't putany more salt on my eggs." And
she says,"Yeah, but that's how Iknow how to make'em.
And it kind of went back andforth like that.
And I finally decided, okay, I'mjust gonna have to hide the
salt.
So that's what I ended up doing.
And um, so every Attendant, likeevery person is different.
(22:19):
Um, but you know, mostly what Ilook for is.
you know, uh, uh, make sure thatthey are really interested in
this job, that they're gonnastay a while because I don't
want a revolving door ofAttendants.
Uh, I like for them to have acar if possible.
Uh, well actually, yeah, becauseriding the bus and when the
(22:40):
weather's bad can be, um, canreally delay everything.
But if I had to, I would hiresomebody who had to ride the
bus.
Uh, but mostly, uh, reliability,you know, I try to get them to
understand that I am relying ontheir, on their work to come in
and help me get dressed so thatI can live my life.
(23:03):
And it's important, it's not thekind of job where you can just
call in and say, uh," I'm notcoming in today.
Uh, you know, I overslept," or,you know,"I don't feel like
working today," or"I'm gonnatake my kids to, uh, the
waterpark,"you know,"so I won'tbe in today." Because that
leaves me in a really badsituation and I have to call for
(23:24):
a backup, which as you know,right now is really difficult,
we, there aren't very manyAttendants available right now.
So I make sure that they're, um,you know, that they realize how
important the job is.
And, um, you know, I always tryto be, uh, upbeat in my, in my
mood, you know, if I have anyuh, issues going on with me.
(23:48):
I set'em aside while I'm dealingwith the Attendant, cuz I don't
want, I don't think they shouldhave to come into my house and
have to deal with, um, whateverissues I'm having.
I can set that aside, deal withwhat I have to deal with and get
my needs taken care of and thensay, okay,"Thanks for coming in.
I'll see you tomorrow." And thenI get back into my life.
So that's usually what I do.
Kristen (24:09):
That's a very good point.
Well, I know that your firstexperience with hiring an
Attendant that was in collegeback in 1980.
Were there Medicaid waiverprograms back then?
Renée (24:25):
Yes, there were.
Um...
Kristen (24:26):
Okay.
Renée (24:27):
Yeah, there were, but um, what I went through a was back
then called TRC, which is TexasRehab Commission, and they paid
for the attending care and theAttendant.
They paid for their room andboard in exchange for being an
Attendant, and then they gotpaid, I don't remember how much
I wanna say 150 a month, whichdoesn't sound like much, but it
(24:49):
was, it was enough back then.
So they actually got free roomand board while in college for
being an Attendant.
So it was a good deal.
Kristen (24:59):
Wow! I know you were saying that it's really hard to
find an Attendant right now, butthat's not just limited to the
pandemic.
It's hard to find an Attendantbecause we can't pay them very
much, and there's no healthinsurance, dental insurance,
(25:21):
there's no worker's comp.
I know that this issue youbecame very passionate about
when you were in college.
What other issues are youpassionate about?
Renée (25:35):
Well, um, I'm very passionate about many things
that have to deal with, uh,people with disabilities.
I do wanna say that the issueswith Attendants right now is,
uh, like you were saying, thepay and one of the things that,
um, Adapt of Texas is, and thePACT is working on, is trying to
get Attendants to get paid moremoney because we've reached a
(25:58):
crisis, where we cannot findAttendants and really who wants
to work for, you know,$8 an houror$7.59 or whatever it is now?
It's just, it's ridiculous andwe're trying to get them, uh, to
give us, give more money to theprograms so that, uh, we can
start getting Attendants.
(26:18):
Uh, right now, um, Attendantsare getting paid less than fast
food workers.
Kristen (26:24):
Yes.
Renée (26:24):
You know, you can get, you can get paid$15 for flipping
a hamburger, but only$8.11 fortaking care of a person with a
Disability.
Well, all they want is to livein the community.
They won't be able to work, andwe just wanna live our own
lives.
But we just need a little help.
And, you know, it shouldn't, itshouldn't be, uh, such a low pay
(26:45):
and we keep working really hardabout that.
Another thing I'm passionateabout is housing, um, especially
accessible, affordable housingin the community.
Uh, I'm on the board ofAccessible Housing Austin, and,
um, we have a 27 unit apartmentthat has, uh, that's fully
(27:07):
accessible and we have, um, uh,duplexes and they're also fully
accessible.
Uh, we had decided many, many,many years ago that people wanna
get out of nursing homes andthey don't wanna have to live
with families or live in anabusive relationship just
because, um, there's no place togo, there's no place to live.
(27:31):
And so, uh, for many are onSection Eight or are under
unlimited income, like SSI orSSDI.
And, with the cost of living,uh, where you supposed to live?
So we work really hard right nowon affordable housing that's,
uh, integrated into thecommunity.
Kristen (27:52):
Yes.
Are there any other passionsthat just light a fire under
you?
Renée (27:59):
(Renée laughs) Well, you know, I just started, um,
something that, uh, I neverrealized before, and that is the
oppression that comes from thegovernment.
Um, for example, uh, you know,SSI, uh, doesn't allow you to,
(28:22):
uh, get married, for example.
Kristen (28:24):
Right.
Renée (28:25):
Or you lose your benefits.
Mm-hmm.
Mm-hmm.
If you go to work, you lose yourbenefits.
And I think what, uh, what itdoes, it, it keeps people
oppressed.
And to me that's a form ofviolence.
And, uh, so I'm working with,um, the Institute of Justice and
with the Activating Change,these are other organizations I
(28:46):
work with...
Kristen (28:47):
Right.
Renée (28:47):
to bring about changes in those old, antiquated, a laws,
you know, that, that don't makesense anymore really.
And, uh, there's no reason fortwo people with a Disability who
are on SSI to not be able to getmarried and have to pretend to
just be roommates, so that theydon't lose their, um, their
benefits.
(29:08):
And to me, that's justridiculous.
You shouldn't, it's not like youmake a lot of money anyway, you
know, so...
Kristen (29:14):
Right.
Renée (29:14):
...why take it, take away the little bit they have.
So, um, I'd like to see thatchanged and I'd like to see, uh,
you know, the, that you're notgonna lose your money if you try
to get a job, uh, because Ithink that's a, a great fear.
And then also when you're onSSI, because the money is so
(29:35):
little, you have to go onhousing programs like Section
Eight and that puts you inapartment complexes that may not
be very good.
For example, I lived in anapartment complex when I was on
SSI one time and there were drugaddicts and uh, drive-by
shootings and things like that.
(29:55):
And I thought, I don't wannalive like this.
And, uh, you know, but I didn'thave a choice at the time.
I was in college and I had anapartment, but, uh, you know,
that was the only place I couldlive.
And my rent was$75, but, youknow, you had to watch out that
you didn't get shot.
Kristen (30:13):
Right.
Renée (30:13):
So, um, you know, uh, so all these things that happened
to me motivate me today tocontinue working on those
issues.
Because I don't think peoplewanna live in those conditions.
Kristen (30:25):
Right, everyone's entitled to safety and dignity.
Would you mind telling us whywas that policy put in place
with, if you're on SSI and ifyou get married, you'll lose
your benefits?
Renée (30:46):
It was additionally put there because they didn't want,
uh, people with disabilities toprocreate, you know, they didn't
want'em to get married.
They're gonna have babies thatare gonna be disabled, and then
we're gonna have to take care of'em, and then we're gonna have
more people on Disability, youknow?
And, and I think that's why thatwas put in place...
Kristen (31:05):
Right.
Renée (31:06):
...it's eugenics.
Kristen (31:08):
Yeah.
Renée (31:09):
Mm-hmm.
And it's the same thing assterilizing they used to do
with, uh, individuals withIntellectual Disabilities like
Down Syndrome.
They would sterilize them sothat they couldn't reproduce.
And I think the Section Eight,uh, housing limitations and the
SSI limitations are there forthat very same reason.
Kristen (31:31):
That's disgusting.
And it's so disturbing that in2022 we still have that policy.
Renée (31:40):
Right.
Yeah.
There's a lot of American lawslike that too.
Kristen (31:44):
Mm-hmm.
Oh, Renée, you went to the"BlackLives Matter," uh, rally.
Can you tell us about that realquick?
Renée (31:54):
Yeah, I saw what happened to George Floyd and
Kristen (31:59):
mm-hmm.
Renée (31:59):
I was like, most people, extremely upset about it.
And it was at the height ofCovid and, uh, people kept
saying,"Don't go out there." Youknow, and, and"It's gonna be
dangerous.
You could get hurt." You knowum,"There's Covid and..." but I
went to the rally anyway becauseI felt it was super important to
(32:21):
support Black Lives Matter.
So I went anyway and I was outthere in the midst of it, uh,
across from the policeheadquarters and then we marched
to the, uh, Capitol.
So, I was there all day longand, um, just, you know,
shouting,"No Justice, No Peace!"Because I think that's
(32:41):
something, um, I really believein.
You know, unless we all haveJustice, there will be no Peace.
I found that to be extremelyimportant and I, to me, it's one
of the best things I've everdone.
Uh, there was a lot of anger outthere, but I also saw that
there, this was gonna bringabout some change and, uh, I
wanted to be a part of that.
Kristen (33:04):
Did you go by yourself or did, did you take some of
your friends with you or anAttendant or family member
or....?
Renée (33:13):
No, I went by myself and I kind of like to do these
things by myself anyway, becauseI don't have to worry about
losing somebody in the crowd.
And so even though I saw peoplethat I knew out there, I, I went
by myself.
This way I could move about as Ineeded to or get out of the way,
not have to worry what happenedto my friend and you know,
(33:34):
things like that.
Usually when I go to rallies,uh, you know, or uh, marches, I
usually go by myself.
Kristen (33:42):
Fair enough.
When you're not, um, being anactivist and fighting against
Ableism, I know an Advocate'sjob is a 24/7 job, it's never
really done.
But what do you do to just havefun, relax, maybe Self Care?
Renée (34:08):
Um, yeah, I, you know, I, I wanna add something here
first, uh, Kristen is that...
Kristen (34:15):
Sure.
Renée (34:16):
Uh, because I was able to work and was able to make a lot
more money than I did being onSSI and, uh, I was able to, uh,
make a significant income and Ihad insurance, and I was able
eventually to buy a house.
Um, I'm living in my secondhouse right now and I have a
(34:40):
live-in Attendant again, butshe's been with me for 16 years
and we know each other extremelywell.
We don't even have to, I don'teven have to tell her anymore,
but we, we've had our issues inthe past and we have 401ks, also
401k plans.
So I've been very, veryfortunate that, um, I was able
to get out of that, uh,lifestyle.
(35:02):
So I, I feel really fortunate inthat and I wanna give that back
to the community and to otherpeople with disabilities.
Because I firmly believe in theDeclaration of Independence, you
know, re (35:15):
the"Life liberty and the pursuit of justice." I think
every human being has thatright.
And that's what motivates me tokeep going.
And, uh, and I, I enjoy doingthat, I really do.
I feel like I'm doing my realwork.
I, I worked for the state ofTexas and that was a great job,
but I feel like my true work iswhat I'm doing now as an
(35:36):
Advocate.
And, uh, so to get back to yourquestion about self-care and
everything, I, I have gottenolder, so I don't have as much
energy as I used to have when Iwas younger.
(Rene Laughs).
Um, I try not to do any workafter 6:00 PM and, uh, I got an
adjustable bed, so I'll lay downand put my feet up and just
(35:58):
watch TV.
I find that relaxing.
I also, uh, have a lot offriends.
I'm very fortunate to have a lotof friends and, uh, we get
together, we're all retired, sowe go and have the, uh, dinner
at the"blue-haired hours," theycall it.
We go have dinner somewhere atfour o'clock or we'll go to an
afternoon matinee movie.
Or we just hang out together.
(36:20):
I, I find that is the best thingfor me because I really love
having my friends around.
Yeah, we're, you know, if youthink of the"Red Hat Ladies,"
that's kind of what we are.
Renée Laughs)
Kristen (36:30):
Oh, I was thinking"The Golden Girls."
Renée (36:33):
"The Golden Girls" too, yeah!
Kristen (36:35):
I like"The Golden Girls."(Laughter) Um, I know you
identify as a Storyteller and Ialso know your friend Nancy.
She comes to my Adapting Shero'smeetings sometimes, and she's
great.
Renée (36:53):
Mm-hmm.
Kristen (36:53):
And do you have any stories of you and Nancy going
out together or, you know...
Renée (37:02):
oh,(Renée Laughs)
Kristen (37:03):
....hanging out?
Renée (37:04):
Nancy and I could write a book,(Renée Laughs), just on all
the things we've, you know, uh,been through.
Interestingly, Nancy was one ofthe"Mean Girls" that I mentioned
in my story.
Kristen (37:17):
Really!
Renée (37:18):
The, the girl that I had turned down for the job, uh,
initially was Nancy's friend.
Kristen (37:25):
Oh, okay.
Renée (37:25):
And she was in Nancy's room when I called and asked if
she wanted to be my Attendant.
So Nancy and all her friendswere all like laughing in the
background,"Ah, she's callingyou back..." you know, and
making fun of me and all that.
And, um, she was one of thepeople that, um, I was afraid
of...(Renée Laughs).
And, uh, but you know, in time,uh, Nancy's a really good person
(37:47):
and she and I became really goodfriends.
We've been friends since thattime, that time I moved into the
dorm.
So we've been friends since 1980and, uh, we've grown old
together and, uh, we, uh, belongto the, um, Chapter 24/26 of the
AARP.
They take, uh, trips to, uh, daytrips and Nancy and I like to go
(38:12):
along.
They rent a charter bus that hasa wheelchair lift on it, and
we'll go to San Antonio or Wacoor places like that.
And I just started on Facebook,I started putting"Nancy and
Renée Leave The House Chapter2,100" or something, uh, to be
funny, you know.
But because so many people Ithink, think that people with
(38:33):
disabilities stay home and we'reout to show that no, we, we
don't stay home.
We're, we're gonna go places,we're gonna be at the
restaurants that you go to.
We we're gonna travel to places.
Um, you know, so, uh, we, we goquite a bit.
Uh, we hang out sometimes a fullday a Saturday and just go get
our haircut and go have lunchand, you know.
(38:56):
Nancy's, Nancy is in awheelchair also.
She has a Disability and so thetwo of us looked pretty funny
even back in college.
Um, the two of us rollingtogether across campus and even
now, we roll together to arestaurant.
We went and had breakfast at"Dan's", for example, and we
roll to the bus and ride the busto, you know, uh, Barton Creek
(39:19):
Mall and we roll around themall.
And so we do things like that.
We, we have a lot of fun.
Kristen (39:26):
Wow! Yeah.
To our listeners who don't know,my friend Toby's here, he is
also a wheelchair user.
He is by far one of my bestfriends.
He's probably my best friend inthe world.
So to him I wanna say"Toby,that's you and I in a couple
years!"(Renée Laughs)
Renée (39:50):
And, uh, so, um, about self-care and everything, I like
to shop, believe it or not, I ama shopper.
So I, I do alot of things thatmake me feel, uh, refreshed and,
uh, Self Care.
Once a month I go and get afacial.
And every three months I have aum, um, Massage Therapist come
(40:12):
to my house and do a full bodymassage for an hour and a half.
Oh God, that's, talk about SelfCare, that's the best thing
ever! And uh, and I love toread.
Reading is something I havealways loved since I was a
child.
Um, I'm an avid reader and Ibelong to a book club and, you
know, I really enjoy meeting upwith the ladies once a month and
(40:34):
so I enjoy that very much too.
Kristen (40:37):
Oh, well I should ask, what book are you reading right
now?
Are you binging anything?
Uh, binging any shows right now?
Renée (40:48):
Um, you know, believe it or not, I was binging, uh,"90
Day Fiancé".
(Renée Laughs).
Kristen (40:54):
Oh, okay.
Renée (40:54):
I don't know how I got caught up in that, but I did and
I just couldn't stop watchingit.
Kristen (40:58):
Sure.
Renée (40:58):
But I like to watch documentaries, lots of
documentaries.
And, um, right now I'm reading abook called,"How Lucky," I can't
remember the name of the author.
But it's a story of a man with,um, Spinal Muscular Atrophy.
He has a Disability who becomesa sleuth, uh, in a, in a
kidnapping crime.
I find that to be a, it's a veryfascinating story and I really,
(41:21):
really enjoy it.
It's"How Lucky" by Will Leitch LE I T C H, and uh, it's really a
great book.
So, uh, that's what I'm readingright now and I'm probably gonna
go finish reading it as soon aswe finish this talk.
(Renée Laughs)
Kristen (41:38):
All right.
Um, if our listeners orfollowers wanna connect with
you, do you have social media ora website, what's the best way
to do that?
Renée (41:53):
Uh, I don't have a website, but I am on, on
Facebook under the name RenéeLopez.
So it should be easy to find.
So if anybody wants to, uh,friend me on Facebook, uh, that
would be, that would be great.
I post things on that I'm doing,like if we have a rally or if
I'm speaking at...
(42:14):
You know, like I spoke at the"Woman's March," you know, and I
was at the rally, uh, the otherday about gun control.
Uh, and you know, and then everyday I try to post something
positive to think about.
And, um, so, uh, I try to, tojust put something positive out
there.
Kristen (42:35):
That's great.
I think with what we're goingthrough right now, our country,
it's always great to readsomething positive.
Renée (42:46):
That's right.
Yeah.
Kristen (42:50):
Well, I could talk to you all day.
Um, I've really enjoyed gettingto know you better cuz I've
always seen you around thecommunity.
Thank you so much for comingback and letting me interview
you this time, and we hope tohave you on the podcast again
someday.
Renée (43:09):
Thank you.
I really enjoyed doing this.
Kristen (43:13):
All right, well, of course, if you've been touched
by anything in this episode orhave any questions about
anything that might have beenmentioned in this episode, we'd
love to hear from you on our"True Tales by Disability
(43:36):
Advocates Facebook Page." Thanksagain, Renée!
Renée (43:41):
Thank you
Kristen (43:42):
So much, fun.
I could literally talk to youfor hours.
Renée (43:47):
(Renée Laughs) Someday we will.
(Renée Laughs)
Kristen (43:49):
Yes! Thanks for listening to True Tales by
Disability Advocates.
This episode was hosted by meKristen Gooch, Produced by Toby
(44:09):
Al-Trabulsi, Editing and Mixingby MsBoye.
The production team includesJoey Gidseg and Jennifer Howell.
Special thanks to our guest
Renée (44:21):
Renée Lopez
Kristen (44:22):
for sharing her story, "Me, Myself, and Sandra." I'm
Kristen Gooch and you've beenlistening to True Tales by
Disability Advocates.
Don't forget to share thepodcast with your friends and
follow the True Tales PodcastFacebook page.
Kamand (44:44):
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
(45:07):
our newsletter at Art SparkTexas dot org.
That's A R T S P A R K T X.org.
This free virtual training isopen to people of all
disabilities, no matter whereyou live.
Welcome to 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.
MsBoye (00:34):
You are listening to True Tales by Disability
Advocates, season two.
The Podcast where Advocatesharness the power of
storytelling to build communitywith their peers and hope to
develop empathy in others.
Recognizing that everyone's lifeis enriched by the inclusion of
multiple voices, Art Spark Texashas been training Disability
Advocates as storytellers forover 20 years.
(00:56):
A team of these DisabilityAdvocates creates True Tales to
give Disabled Storytellers theopportunity to share their
personal stories and livedexperience in their authentic
voices.
We offer our unique and oftenunderrepresented perspective to
the growing community of podcastlisteners worldwide.
MsBoye Live Radio (01:15):
Sit back an enjoy this episode,"From
Self-Advocate to Red Hat Lady",featuring host Kristen Gooch and
Storyteller Renee Lopez.
Kristen (01:33):
Welcome to True Tales by Disability Advocates, the
podcast where we change theworld one story at a time.
I'm Kristen Gooch, and I'm yourhost.
I'm here today with storytellerRenée Lopez, who will be sharing
her story,"Me, Myself, andSandra." Hi Renée, how's it
(01:57):
going?
Renée (01:58):
Pretty good.
Pretty good.
I just got home about 20 minutesago and I'm, I'm good to go.
Kristen (02:05):
I'm so excited that you're back for Season Two.
I'm so happy you're here andthat I get to interview you this
time.
Our listeners may remember yourstory,"Witchy Woman" from Season
One, and it was great and Ican't wait for them to hear this
(02:27):
next story.
Renée (02:29):
Well, thank you.
I'm excited to be here.
Kristen (02:32):
Renée, I don't wanna give away anything about your
story before our listeners get achance to hear it.
But with that being said, Ithink it's really important that
all young adults withdisabilities and their parents,
guardians, other family membersget to hear it as well.
Renée (02:53):
Thank you.
I'm, I'm happy to share it.
I feel like I've learned a lotand, and I like sharing that
with others that are younger(laughs)
Kristen (03:01):
What inspired you to write it?
Renée (03:03):
Well, um, I was taking, um, OMOD, which is Opening Minds
Opening Doors, and where wewrote stories about our lives.
And, um, I was just rememberingthe experience I had when I
first had to have an Attendantand I thought that would make an
interesting story because, um,what transpired is really what
(03:25):
changed me into, uh, well, itmatured me, let me put it that
way.
And I learned about myself andwhat my needs were and thought
it was something, um, I could,others could use as well.
Kristen (03:37):
I agree.
So, we can't wait to hear yourstory.
Renée (03:47):
I'm Renée Lopez and this is my story.
It's titled"Me, Myself, andSandra" But first I wanna give
you a couple of definitions.
The first word, noun, Victim (03:58):
A person harmed, injured, or
killed as a result of a crimeaccident, or other event or
action.
Synonyms are (04:09):
sufferer, injured, party, casualty, loser, prey,
stooge, dupe, sucker, fool,chump.
The second word I want you toremember is also a noun, Victor:
a person who defeats an enemy oropponent in a battle game or
(04:31):
other competition.
winner, champion, conqueror, conquering hero,
vanquisher, hero.
Up until I went to college, allmy physical needs were taken
care of on my family or thestaff and aides at the
hospitals, schools and rehabcenters I went to.
(04:52):
But when I went to University ofTexas as a freshman in 1980, I
had to live in a dorm.
All freshmen had to, unless likeme, your family lived in Austin
and you could opt to live athome.
But eager to be independent.
I chose to live in Jester dorm.
My dorm room was very small withtwo pull-out beds, two small
(05:12):
desks, a sink, two small closetsand a community bathroom down
the hall.
It felt like a shoebox or a jailcell! It was then, that freshman
year that I found out I had tohire my own live-in Attendant.
Well, how in the world do you dothat?
I had never done this before andhad no clue as to how, how to go
(05:36):
about doing it.
I guess I thought an Attendantwould magically appear and
instinctively know what to dofor me.
I received two Attendantreferrals from Disabled Student
Services, but it was up to me tointerview and hire.
I interviewed the two referralswith my mother and chose a young
woman who seemed very mature andwas a hairstylist by trade.
(05:59):
I could just imagine all thehairdo's she could do to my
hair.
How cool was that?
The night before we were to moveinto the dorm, my mother
received a call from this maturehairstylist.
She had changed her mind aboutgoing to UT and she was so
sorry, but she was going back toher boyfriend in Arkansas.
My mother didn't tell me tillmorning, she wanted me to go
(06:21):
ahead and sleep for the night.
But when I got up, panic ensued.
I quickly called the otherreferral that I had turned down
to ask her if she was stillinterested in the job.
She emphatically said,"No!" ThenI heard laughter in the
background.
It turned out she was friendswith the other girls on my
(06:42):
floor, and I had made the bigmistake of not hiring her and
her friends were now against me.
Great start to college.
At the 11th hour, I get areferral named Esther, and I
hire her on the spot.
I move into the dorm with Estheras my roommate, Attendant, and
with enemies all around me.
(07:04):
From the very beginning, Ididn't like Esther.
She had never been an Attendantand didn't take my needs
seriously, you know, the way mymother did.
She was also a music major,majoring in the oboe, which was
really annoying to me when shepracticed in the shoebox of our
room.
You can imagine what I wantedher to do with that oboe! On top
(07:26):
of being shy, I was also afraidto venture out because of the
"Mean Girls" all around me.
Those bitches.
I became lonely and reclusive.
Esther made friends with thegirls in the dorm and had a
boyfriend within weeks.
I hated her.
My biggest emotional growthspurt occurred when I got to my
(07:48):
dorm room late one night.
I was expecting Esther to bethere waiting for me, but she
wasn't.
I wondered where she could be at11:30 at night.
I piddled around the dorm roomwaiting.
By 1:00 AM she still wasn'tthere.
2:00 AM, nada! I was starting topanic.
It was not too late to call mymom.
(08:10):
Not that I wanted to, because Ididn't want to hear the,"I knew
this was gonna happen!" And the,"I told you so!" Actually it was
too late to call anyone at thatungodly hour.
Except my friend Sandra.
Sandra had Cerebral Palsy, wasthree years older than me and
lived independently in her ownapartment.
(08:31):
So she knew the score.
First, she let me cry and helpedme calm down so that I could
think.
I remembered bringing mydressing stick and other
assistive devices.
But in the dorm, as at home,they were in the closet
collecting dust.
I took them out of the closetand with Sandra on the phone
supporting me all the way, threehours later, I got out of my leg
(08:54):
braces and my clothes and intomy nightgown.
By 5:00 AM I was ready for bed,Sandra and I hung up.
I turned out the light and gotinto bed.
I felt strangely different.
I had a smile on my face.
I had done it.
I had taken care of myself.
(09:15):
I realized that I will alwaysneed an Attendant, but that
night I went from Victim toVictor.
Kristen (09:51):
Welcome back.
I'm here with Renée Lopez.
Renée thanks for sharing yourstory with us today.
I find your story veryrelatable.
It highlights the importance ofadvocating for your own specific
needs and having access to astrong support network while
(10:13):
transitioning from high schoolto college.
I know that it can be excitinggoing off to college and living
in a dorm or living on your ownfor the first time.
But it can also be very nervewracking.
And I also know, from personalexperience, 18 and 19 year old
(10:34):
girls, they're adults, but stillimmature.
And as a result of that can bereally bitchy, sometimes.
And it can also be, well, it'sdifficult for all college
freshman starting out, butespecially when you have a
Disability.
There's more to think about,your academic accommodations and
(11:00):
also finding an Attendant tohelp you with your habilitation
needs, your a, your, uh, ADLsactivities of daily living, and
the university doesn't providethat for you.
Um, I know that your experiencehappened in 1980 and things are
(11:22):
better now, but it's still anissue.
If you had a teenage daughter ora niece going off to college,
what advice would you give her?
Renée (11:36):
Err, yeah, Kristen, this, this happened back in the 1980s.
Uh, and certainly campuses aremuch better now and, and
certainly more accessible.
Um, but I think, uh, teenagersor, you know, young adults, I
guess are probably pretty muchthe same as they were in 1980.
Um, if I had a teenage daughter,and I do have nieces actually,
(12:00):
that are starting college thisyear in September.
My advice to, they're notdisabled, but my advice to them
is, um, to, uh, be yourself andnot be afraid to speak up and,
um, you know, to, uh, to havefaith and trust in the whole
process.
Um, if I had a disabled, uh,daughter or niece, I would
(12:24):
definitely teach her to, uh,speak up and to know what her
needs are because, I think whathappened with me was that, um,
my, my family unintentionallyand including school, uh, and
rehab hospitals, they never,they just took care of your
needs because that was theirjob.
(12:46):
But I was never taught to askfor what I need.
So I went to college assumingthat people were just gonna know
what to do and um, so that was,that was the biggest lesson for
me was that I had to figure outwhat are my needs, uh, what do I
need to have done, what are myexpectations, and be able to,
(13:08):
uh, express that to an Attendantso that we have better
communication and that my needsare met.
And that's, that's one of thethings that would change now.
Kristen (13:20):
Great! Um, I know for me personally, when I graduated
from high school in 2003, peopletold me ahead of time that, oh,
"You need to be your ownAdvocate.
You need to speak up." And it'snot that I didn't believe'em and
I started doing that when I wasin high school, but it's a lot
(13:42):
different when people tell youthat, versus you find yourself
in that situation and it becomesvery real.
Renée (13:52):
Yeah, it does, and I, I wanted to tell you too, that's
funny that you started, uh,understanding the word Advocate
at a much younger age than Idid.
I didn't even know what anAdvocate was when I went to
college.
And, um, I, I think that the bigdifference between when I went
to school and the people that goto school now, is that they are
(14:13):
learning at a younger age how tobe more aware of their needs
themselves in society.
And when I was growing up, itwas still assumed that, um,
yeah, okay, I was going tocollege, but I was probably
always gonna have to be takencare of by family members.
And so it probably, it justnever occurred to anybody to
teach me about Advocacy or SelfAdvocacy.
Kristen (14:38):
Yeah very true.
Um, well, another interestingthing that I had that taught me
that I really needed to Advocatefor myself, is my sophomore
year, my one-on-onepara-professional was actually a
paraplegic, uh, her name wasAmanda.
(14:59):
So she really, um, she was like,"No, you need to tell people
exactly what you need.
You know, even if it's somethingas simple as taking something
out of your backpack so that youcan hand in your assignments,
nobody's gonna immediately dothat for you.
So always speak up."
Renée (15:19):
Right, exactly.
Kristen (15:20):
So, Last year I started a peer support group for women
with disabilities, uh, womenwith Mobility Disabilities
called"Adapting Shero's." Um,where we get together and, you
know, non-judgmental, uh, safe,relaxed environment, and we talk
(15:45):
about what's going on in ourlives and about different
strategies of handling thingswhen you have a Mobility
Disability.
Like uh, dressing, putting onmakeup, um, therapies, sharing
stories like that.
It seems like your friend,Sandra, she...
(16:07):
Was she like that for you?
Did she help you learn like someof the tricks of the trade, so
to speak?
Renée (16:15):
Oh yeah, she definitely did.
She was, uh, she was veryindependent and I really admired
that, and I wanted to be likeher.
I, I couldn't wait to have myown apartment and have a job and
drive a car and everything shewas doing, and I just was, you
know, like,"I wanna be likeSandra".
And um, but at the time nobodyelse said, you can be like
(16:39):
Sandra.
So, um, I wasn't sure, but youknow, I would, I hung around her
quite a bit and um, you know, Iwas able to watch and see how
she did things and how she spokeup and how she didn't, she
didn't take anything lying down.
And, uh, even though I was veryquiet at the time and in the
(17:00):
background, most of the time, Ireally.
I think I learned a whole lot byher and I've always been very
grateful to have her in my life.
Kristen (17:09):
So how did y'all meet?
Renée (17:12):
Sandra and I met in elementary school.
Uh, we were both in SpecialEducation at Go Valley
Elementary.
Uh, back in the sixties, uh,Special Education included
everybody regardless of yourDisability, and, uh, she and I
were in class, uh, in the sameclass and we just became
(17:34):
friends, you know, from a veryyoung age.
Kristen (17:37):
Sure.
Do y'all still keep in touch?
Renée (17:40):
Uh, yes, we do.
Uh, we don't hang out as muchanymore, I live in Austin and
she lives in San Antonio.
And, uh, because we're, we'vegotten so much older, we're in
our sixties...
Kristen (17:53):
mm-hmm.
Renée (17:53):
...um, it's, it's a lot more difficult for us to travel
and get around and, um, I can'tgo spend the night at her house
like I used to.
And, uh, she doesn't driveanymore.
So, uh, but we do keep in touchnow and then.
Kristen (18:09):
Well, that's good.
She seemed like a really specialfriend.
Renée (18:16):
Yeah, she, she was and she still is.
Kristen (18:19):
Yeah.
So, I know that this is, or thatthis was a painful experience
with dealing with Esther, theannoying roommate, and...
Renée (18:33):
(Renée laughs)
Kristen (18:35):
...having, you know, the Attendant that you, well,
having someone who you thoughtwas gonna be your Attendant.
Um, and give you all kinds offabulous hair styles.
Um, I would've hired that personat 18 myself, um,
Renée (18:52):
(Renée Laughs)
Kristen (18:54):
But what did you learn from that?
Renée (18:59):
Well, you know, in hindsight, I think it was
probably one of the best thingsthat ever happened.
Um, yeah, it would've been greatto have somebody doing my hair
and makeup and all that and,and, you know, um, looking
pretty, I guess.
But, but I don't know that Iwould've learned anything, uh,
about being on my own.
And, um, so, you know, lifeknows what it's doing and it
(19:25):
turns out that Esther was thebest thing for me.
Now I look back on it and I'mreally grateful to her.
She, it really wasn't her faultthat she wasn't a very good
Attendant.
Um, it was my fault for havingthe assumption that Attendants
were gonna be like my mom andanticipate my every need and
(19:46):
just take care of me and love meand hold my hand.
And, you know, and it was a, arude awakening to find out that,
uh, people are not like that andthey're not gonna do that and
they really shouldn't.
Um, I was, I was an 18 year old,and, but I still thought I was
like six, you know?
(20:06):
And, uh, so I grew up reallyfast in that semester, uh,
having Esther as my Attendant.
And, uh, over the years Ilearned how to speak up for
myself and how to, um, you know,uh, know what my needs are and,
and how to make them, you know,how to meet those needs.
(20:27):
And, uh, at the same time, youknow, being friendly with your
Attendant, it wasn't necessaryto, uh, always be friends with
them.
Uh, sometimes the lines can getblurred and it's, it's good to
have a, a, like a boundary whereyour Attendant always knows that
she's hired to take care of youand, uh, not, not so much to,
(20:53):
uh, be there to tell you how tolive your life.
Um, usually what I look for ina, in an Attendant, uh, one of
the things I ask is, um, forpunctuality and, uh, when I was
working, I worked for 30 yearsfor the state of Texas, and it
was very, very important that,uh, my Attendant be punctual
(21:14):
because I had to be at work at acertain time.
So one of the things I alwayssaid, like,"You must be on time.
You have to be here at seveno'clock because you need to get
me dressed and I have to be atwork by nine." And and you know,
also, um, the boundaries where,uh, I want my food cooked, for
example, the way I want to eatit and not the way you want to
(21:37):
eat it.
Um, so I give the example whereI had an Attendant once that for
some reason she loves salt andshe over salted everything.
And, uh, whenever I have toomuch salt, well my feet swell
and stuff.
So I started telling her, pleasedon't put any salt in.
And she goes,"Yeah, but that'show I like'em." And I said,
(21:57):
"Well, yeah, I know that's howyou like'em, but I'm the one
eating'em, so please don't putany more salt on my eggs." And
she says,"Yeah, but that's how Iknow how to make'em.
And it kind of went back andforth like that.
And I finally decided, okay, I'mjust gonna have to hide the
salt.
So that's what I ended up doing.
And um, so every Attendant, likeevery person is different.
(22:19):
Um, but you know, mostly what Ilook for is.
you know, uh, uh, make sure thatthey are really interested in
this job, that they're gonnastay a while because I don't
want a revolving door ofAttendants.
Uh, I like for them to have acar if possible.
Uh, well actually, yeah, becauseriding the bus and when the
(22:40):
weather's bad can be, um, canreally delay everything.
But if I had to, I would hiresomebody who had to ride the
bus.
Uh, but mostly, uh, reliability,you know, I try to get them to
understand that I am relying ontheir, on their work to come in
and help me get dressed so thatI can live my life.
(23:03):
And it's important, it's not thekind of job where you can just
call in and say, uh," I'm notcoming in today.
Uh, you know, I overslept," or,you know,"I don't feel like
working today," or"I'm gonnatake my kids to, uh, the
waterpark,"you know,"so I won'tbe in today." Because that
leaves me in a really badsituation and I have to call for
(23:24):
a backup, which as you know,right now is really difficult,
we, there aren't very manyAttendants available right now.
So I make sure that they're, um,you know, that they realize how
important the job is.
And, um, you know, I always tryto be, uh, upbeat in my, in my
mood, you know, if I have anyuh, issues going on with me.
(23:48):
I set'em aside while I'm dealingwith the Attendant, cuz I don't
want, I don't think they shouldhave to come into my house and
have to deal with, um, whateverissues I'm having.
I can set that aside, deal withwhat I have to deal with and get
my needs taken care of and thensay, okay,"Thanks for coming in.
I'll see you tomorrow." And thenI get back into my life.
So that's usually what I do.
Kristen (24:09):
That's a very good point.
Well, I know that your firstexperience with hiring an
Attendant that was in collegeback in 1980.
Were there Medicaid waiverprograms back then?
Renée (24:25):
Yes, there were.
Um...
Kristen (24:26):
Okay.
Renée (24:27):
Yeah, there were, but um, what I went through a was back
then called TRC, which is TexasRehab Commission, and they paid
for the attending care and theAttendant.
They paid for their room andboard in exchange for being an
Attendant, and then they gotpaid, I don't remember how much
I wanna say 150 a month, whichdoesn't sound like much, but it
(24:49):
was, it was enough back then.
So they actually got free roomand board while in college for
being an Attendant.
So it was a good deal.
Kristen (24:59):
Wow! I know you were saying that it's really hard to
find an Attendant right now, butthat's not just limited to the
pandemic.
It's hard to find an Attendantbecause we can't pay them very
much, and there's no healthinsurance, dental insurance,
(25:21):
there's no worker's comp.
I know that this issue youbecame very passionate about
when you were in college.
What other issues are youpassionate about?
Renée (25:35):
Well, um, I'm very passionate about many things
that have to deal with, uh,people with disabilities.
I do wanna say that the issueswith Attendants right now is,
uh, like you were saying, thepay and one of the things that,
um, Adapt of Texas is, and thePACT is working on, is trying to
get Attendants to get paid moremoney because we've reached a
(25:58):
crisis, where we cannot findAttendants and really who wants
to work for, you know,$8 an houror$7.59 or whatever it is now?
It's just, it's ridiculous andwe're trying to get them, uh, to
give us, give more money to theprograms so that, uh, we can
start getting Attendants.
(26:18):
Uh, right now, um, Attendantsare getting paid less than fast
food workers.
Kristen (26:24):
Yes.
Renée (26:24):
You know, you can get, you can get paid$15 for flipping
a hamburger, but only$8.11 fortaking care of a person with a
Disability.
Well, all they want is to livein the community.
They won't be able to work, andwe just wanna live our own
lives.
But we just need a little help.
And, you know, it shouldn't, itshouldn't be, uh, such a low pay
(26:45):
and we keep working really hardabout that.
Another thing I'm passionateabout is housing, um, especially
accessible, affordable housingin the community.
Uh, I'm on the board ofAccessible Housing Austin, and,
um, we have a 27 unit apartmentthat has, uh, that's fully
(27:07):
accessible and we have, um, uh,duplexes and they're also fully
accessible.
Uh, we had decided many, many,many years ago that people wanna
get out of nursing homes andthey don't wanna have to live
with families or live in anabusive relationship just
because, um, there's no place togo, there's no place to live.
(27:31):
And so, uh, for many are onSection Eight or are under
unlimited income, like SSI orSSDI.
And, with the cost of living,uh, where you supposed to live?
So we work really hard right nowon affordable housing that's,
uh, integrated into thecommunity.
Kristen (27:52):
Yes.
Are there any other passionsthat just light a fire under
you?
Renée (27:59):
(Renée laughs) Well, you know, I just started, um,
something that, uh, I neverrealized before, and that is the
oppression that comes from thegovernment.
Um, for example, uh, you know,SSI, uh, doesn't allow you to,
(28:22):
uh, get married, for example.
Kristen (28:24):
Right.
Renée (28:25):
Or you lose your benefits.
Mm-hmm.
Mm-hmm.
If you go to work, you lose yourbenefits.
And I think what, uh, what itdoes, it, it keeps people
oppressed.
And to me that's a form ofviolence.
And, uh, so I'm working with,um, the Institute of Justice and
with the Activating Change,these are other organizations I
(28:46):
work with...
Kristen (28:47):
Right.
Renée (28:47):
to bring about changes in those old, antiquated, a laws,
you know, that, that don't makesense anymore really.
And, uh, there's no reason fortwo people with a Disability who
are on SSI to not be able to getmarried and have to pretend to
just be roommates, so that theydon't lose their, um, their
benefits.
(29:08):
And to me, that's justridiculous.
You shouldn't, it's not like youmake a lot of money anyway, you
know, so...
Kristen (29:14):
Right.
Renée (29:14):
...why take it, take away the little bit they have.
So, um, I'd like to see thatchanged and I'd like to see, uh,
you know, the, that you're notgonna lose your money if you try
to get a job, uh, because Ithink that's a, a great fear.
And then also when you're onSSI, because the money is so
(29:35):
little, you have to go onhousing programs like Section
Eight and that puts you inapartment complexes that may not
be very good.
For example, I lived in anapartment complex when I was on
SSI one time and there were drugaddicts and uh, drive-by
shootings and things like that.
(29:55):
And I thought, I don't wannalive like this.
And, uh, you know, but I didn'thave a choice at the time.
I was in college and I had anapartment, but, uh, you know,
that was the only place I couldlive.
And my rent was$75, but, youknow, you had to watch out that
you didn't get shot.
Kristen (30:13):
Right.
Renée (30:13):
So, um, you know, uh, so all these things that happened
to me motivate me today tocontinue working on those
issues.
Because I don't think peoplewanna live in those conditions.
Kristen (30:25):
Right, everyone's entitled to safety and dignity.
Would you mind telling us whywas that policy put in place
with, if you're on SSI and ifyou get married, you'll lose
your benefits?
Renée (30:46):
It was additionally put there because they didn't want,
uh, people with disabilities toprocreate, you know, they didn't
want'em to get married.
They're gonna have babies thatare gonna be disabled, and then
we're gonna have to take care of'em, and then we're gonna have
more people on Disability, youknow?
And, and I think that's why thatwas put in place...
Kristen (31:05):
Right.
Renée (31:06):
...it's eugenics.
Kristen (31:08):
Yeah.
Renée (31:09):
Mm-hmm.
And it's the same thing assterilizing they used to do
with, uh, individuals withIntellectual Disabilities like
Down Syndrome.
They would sterilize them sothat they couldn't reproduce.
And I think the Section Eight,uh, housing limitations and the
SSI limitations are there forthat very same reason.
Kristen (31:31):
That's disgusting.
And it's so disturbing that in2022 we still have that policy.
Renée (31:40):
Right.
Yeah.
There's a lot of American lawslike that too.
Kristen (31:44):
Mm-hmm.
Oh, Renée, you went to the"BlackLives Matter," uh, rally.
Can you tell us about that realquick?
Renée (31:54):
Yeah, I saw what happened to George Floyd and
Kristen (31:59):
mm-hmm.
Renée (31:59):
I was like, most people, extremely upset about it.
And it was at the height ofCovid and, uh, people kept
saying,"Don't go out there." Youknow, and, and"It's gonna be
dangerous.
You could get hurt." You knowum,"There's Covid and..." but I
went to the rally anyway becauseI felt it was super important to
(32:21):
support Black Lives Matter.
So I went anyway and I was outthere in the midst of it, uh,
across from the policeheadquarters and then we marched
to the, uh, Capitol.
So, I was there all day longand, um, just, you know,
shouting,"No Justice, No Peace!"Because I think that's
(32:41):
something, um, I really believein.
You know, unless we all haveJustice, there will be no Peace.
I found that to be extremelyimportant and I, to me, it's one
of the best things I've everdone.
Uh, there was a lot of anger outthere, but I also saw that
there, this was gonna bringabout some change and, uh, I
wanted to be a part of that.
Kristen (33:04):
Did you go by yourself or did, did you take some of
your friends with you or anAttendant or family member
or....?
Renée (33:13):
No, I went by myself and I kind of like to do these
things by myself anyway, becauseI don't have to worry about
losing somebody in the crowd.
And so even though I saw peoplethat I knew out there, I, I went
by myself.
This way I could move about as Ineeded to or get out of the way,
not have to worry what happenedto my friend and you know,
(33:34):
things like that.
Usually when I go to rallies,uh, you know, or uh, marches, I
usually go by myself.
Kristen (33:42):
Fair enough.
When you're not, um, being anactivist and fighting against
Ableism, I know an Advocate'sjob is a 24/7 job, it's never
really done.
But what do you do to just havefun, relax, maybe Self Care?
Renée (34:08):
Um, yeah, I, you know, I, I wanna add something here
first, uh, Kristen is that...
Kristen (34:15):
Sure.
Renée (34:16):
Uh, because I was able to work and was able to make a lot
more money than I did being onSSI and, uh, I was able to, uh,
make a significant income and Ihad insurance, and I was able
eventually to buy a house.
Um, I'm living in my secondhouse right now and I have a
(34:40):
live-in Attendant again, butshe's been with me for 16 years
and we know each other extremelywell.
We don't even have to, I don'teven have to tell her anymore,
but we, we've had our issues inthe past and we have 401ks, also
401k plans.
So I've been very, veryfortunate that, um, I was able
to get out of that, uh,lifestyle.
(35:02):
So I, I feel really fortunate inthat and I wanna give that back
to the community and to otherpeople with disabilities.
Because I firmly believe in theDeclaration of Independence, you
know, re (35:15):
the"Life liberty and the pursuit of justice." I think
every human being has thatright.
And that's what motivates me tokeep going.
And, uh, and I, I enjoy doingthat, I really do.
I feel like I'm doing my realwork.
I, I worked for the state ofTexas and that was a great job,
but I feel like my true work iswhat I'm doing now as an
(35:36):
Advocate.
And, uh, so to get back to yourquestion about self-care and
everything, I, I have gottenolder, so I don't have as much
energy as I used to have when Iwas younger.
(Rene Laughs).
Um, I try not to do any workafter 6:00 PM and, uh, I got an
adjustable bed, so I'll lay downand put my feet up and just
(35:58):
watch TV.
I find that relaxing.
I also, uh, have a lot offriends.
I'm very fortunate to have a lotof friends and, uh, we get
together, we're all retired, sowe go and have the, uh, dinner
at the"blue-haired hours," theycall it.
We go have dinner somewhere atfour o'clock or we'll go to an
afternoon matinee movie.
Or we just hang out together.
(36:20):
I, I find that is the best thingfor me because I really love
having my friends around.
Yeah, we're, you know, if youthink of the"Red Hat Ladies,"
that's kind of what we are.
Renée Laughs)
Kristen (36:30):
Oh, I was thinking"The Golden Girls."
Renée (36:33):
"The Golden Girls" too, yeah!
Kristen (36:35):
I like"The Golden Girls."(Laughter) Um, I know you
identify as a Storyteller and Ialso know your friend Nancy.
She comes to my Adapting Shero'smeetings sometimes, and she's
great.
Renée (36:53):
Mm-hmm.
Kristen (36:53):
And do you have any stories of you and Nancy going
out together or, you know...
Renée (37:02):
oh,(Renée Laughs)
Kristen (37:03):
....hanging out?
Renée (37:04):
Nancy and I could write a book,(Renée Laughs), just on all
the things we've, you know, uh,been through.
Interestingly, Nancy was one ofthe"Mean Girls" that I mentioned
in my story.
Kristen (37:17):
Really!
Renée (37:18):
The, the girl that I had turned down for the job, uh,
initially was Nancy's friend.
Kristen (37:25):
Oh, okay.
Renée (37:25):
And she was in Nancy's room when I called and asked if
she wanted to be my Attendant.
So Nancy and all her friendswere all like laughing in the
background,"Ah, she's callingyou back..." you know, and
making fun of me and all that.
And, um, she was one of thepeople that, um, I was afraid
of...(Renée Laughs).
And, uh, but you know, in time,uh, Nancy's a really good person
(37:47):
and she and I became really goodfriends.
We've been friends since thattime, that time I moved into the
dorm.
So we've been friends since 1980and, uh, we've grown old
together and, uh, we, uh, belongto the, um, Chapter 24/26 of the
AARP.
They take, uh, trips to, uh, daytrips and Nancy and I like to go
(38:12):
along.
They rent a charter bus that hasa wheelchair lift on it, and
we'll go to San Antonio or Wacoor places like that.
And I just started on Facebook,I started putting"Nancy and
Renée Leave The House Chapter2,100" or something, uh, to be
funny, you know.
But because so many people Ithink, think that people with
(38:33):
disabilities stay home and we'reout to show that no, we, we
don't stay home.
We're, we're gonna go places,we're gonna be at the
restaurants that you go to.
We we're gonna travel to places.
Um, you know, so, uh, we, we goquite a bit.
Uh, we hang out sometimes a fullday a Saturday and just go get
our haircut and go have lunchand, you know.
(38:56):
Nancy's, Nancy is in awheelchair also.
She has a Disability and so thetwo of us looked pretty funny
even back in college.
Um, the two of us rollingtogether across campus and even
now, we roll together to arestaurant.
We went and had breakfast at"Dan's", for example, and we
roll to the bus and ride the busto, you know, uh, Barton Creek
(39:19):
Mall and we roll around themall.
And so we do things like that.
We, we have a lot of fun.
Kristen (39:26):
Wow! Yeah.
To our listeners who don't know,my friend Toby's here, he is
also a wheelchair user.
He is by far one of my bestfriends.
He's probably my best friend inthe world.
So to him I wanna say"Toby,that's you and I in a couple
years!"(Renée Laughs)
Renée (39:50):
And, uh, so, um, about self-care and everything, I like
to shop, believe it or not, I ama shopper.
So I, I do alot of things thatmake me feel, uh, refreshed and,
uh, Self Care.
Once a month I go and get afacial.
And every three months I have aum, um, Massage Therapist come
(40:12):
to my house and do a full bodymassage for an hour and a half.
Oh God, that's, talk about SelfCare, that's the best thing
ever! And uh, and I love toread.
Reading is something I havealways loved since I was a
child.
Um, I'm an avid reader and Ibelong to a book club and, you
know, I really enjoy meeting upwith the ladies once a month and
(40:34):
so I enjoy that very much too.
Kristen (40:37):
Oh, well I should ask, what book are you reading right
now?
Are you binging anything?
Uh, binging any shows right now?
Renée (40:48):
Um, you know, believe it or not, I was binging, uh,"90
Day Fiancé".
(Renée Laughs).
Kristen (40:54):
Oh, okay.
Renée (40:54):
I don't know how I got caught up in that, but I did and
I just couldn't stop watchingit.
Kristen (40:58):
Sure.
Renée (40:58):
But I like to watch documentaries, lots of
documentaries.
And, um, right now I'm reading abook called,"How Lucky," I can't
remember the name of the author.
But it's a story of a man with,um, Spinal Muscular Atrophy.
He has a Disability who becomesa sleuth, uh, in a, in a
kidnapping crime.
I find that to be a, it's a veryfascinating story and I really,
(41:21):
really enjoy it.
It's"How Lucky" by Will Leitch LE I T C H, and uh, it's really a
great book.
So, uh, that's what I'm readingright now and I'm probably gonna
go finish reading it as soon aswe finish this talk.
(Renée Laughs)
Kristen (41:38):
All right.
Um, if our listeners orfollowers wanna connect with
you, do you have social media ora website, what's the best way
to do that?
Renée (41:53):
Uh, I don't have a website, but I am on, on
Facebook under the name RenéeLopez.
So it should be easy to find.
So if anybody wants to, uh,friend me on Facebook, uh, that
would be, that would be great.
I post things on that I'm doing,like if we have a rally or if
I'm speaking at...
(42:14):
You know, like I spoke at the"Woman's March," you know, and I
was at the rally, uh, the otherday about gun control.
Uh, and you know, and then everyday I try to post something
positive to think about.
And, um, so, uh, I try to, tojust put something positive out
there.
Kristen (42:35):
That's great.
I think with what we're goingthrough right now, our country,
it's always great to readsomething positive.
Renée (42:46):
That's right.
Yeah.
Kristen (42:50):
Well, I could talk to you all day.
Um, I've really enjoyed gettingto know you better cuz I've
always seen you around thecommunity.
Thank you so much for comingback and letting me interview
you this time, and we hope tohave you on the podcast again
someday.
Renée (43:09):
Thank you.
I really enjoyed doing this.
Kristen (43:13):
All right, well, of course, if you've been touched
by anything in this episode orhave any questions about
anything that might have beenmentioned in this episode, we'd
love to hear from you on our"True Tales by Disability
(43:36):
Advocates Facebook Page." Thanksagain, Renée!
Renée (43:41):
Thank you
Kristen (43:42):
So much, fun.
I could literally talk to youfor hours.
Renée (43:47):
(Renée Laughs) Someday we will.
(Renée Laughs)
Kristen (43:49):
Yes! Thanks for listening to True Tales by
Disability Advocates.
This episode was hosted by meKristen Gooch, Produced by Toby
(44:09):
Al-Trabulsi, Editing and Mixingby MsBoye.
The production team includesJoey Gidseg and Jennifer Howell.
Special thanks to our guest
Renée (44:21):
Renée Lopez
Kristen (44:22):
for sharing her story, "Me, Myself, and Sandra." I'm
Kristen Gooch and you've beenlistening to True Tales by
Disability Advocates.
Don't forget to share thepodcast with your friends and
follow the True Tales PodcastFacebook page.
Kamand (44:44):
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
(45:07):
our newsletter at Art SparkTexas dot org.
That's A R T S P A R K T X.org.
This free virtual training isopen to people of all
disabilities, no matter whereyou live.
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