April 29, 2022 • 36 mins
On this episode of Disability Talks, we pass the mic to our Executive Director, Stephanie Quigley, as she talks with Jake & Genine Bashore from Cookie Break with Jake about autism, awareness, pride for neurodiversity, conservatorships and MORE!
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Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Intro (00:02):
Welcome to Disability Talks, a podcast produced by
Abilities in Motion.
I'm your host, Ed Granger.
Join us to encounter uniqueperspectives on accessibility
and independence, and to hearstories from everyday people
living their most independenteveryday lives, where essential
conversations find their place.
Let's talk.
Stephanie (00:24):
Welcome to Disability Talks.
I am your special host fortoday's episode.
My name is Stephanie Quigley.
I am the Executive Director ofAbilities in Motion, and this is
a special episode with some veryspecial guests this morning.
I have Genine Bashore advocate,mom friend, previous employee of
Abilities in Motion.
And with her, we have her sonJacob Beshore.
(00:46):
Welcome.
Jacob (00:47):
Hello.
Stephanie (00:47):
Hello.
We're doing special kind of pastthe mic edition.
You're a regular host, Ed is,has been gracious enough to let
me handle today's podcast.
I'm really excited to have youboth with us, um, as we talk
about autism.
So I'll just get things startedby, by talking about April is as
(01:08):
we know in our community, AutismAwareness Month and Jake is
autistic.
Genine (01:15):
Yes.
Jacob (01:15):
Yes.
Stephanie (01:16):
So let's just dive right into Autism Awareness
Month and our general thoughtsof about, what does that bring
to the autistic community?
If anything.
Genine (01:26):
I actually had to look it up and I was surprised to
find out that it was actuallystarted in 1972, but it wasn't
until November 1st, 2007, thatthe UN declared April 2nd, um,
World Autism Day.
So it's, it's been recognized.
Um, there's kind of been a shiftover the past few years of it
(01:49):
being more kind of turning fromAutism Awareness Month to Autism
Acceptance Month.
We kind of like to describe itas okay, if you're aware that
someone is in the room, that's,that's really cool.
Um, if you accept thatsomebody's in the room, it, it
makes a much different point.
(02:09):
It it's great that you're awareof autism.
What are you doing to accept it?
We'd love for the greatercommunity to move the needle
from acceptance to pride andappreciation.
Wouldn't it be great if it was,you know, April was Autism Pride
Month.
Stephanie (02:25):
I think why I was excited to have you and Jake on
the podcast today was we did apodcast a few year, probably in
2019, the three of us.
And we recorded that podcast, Ithink right around Autism
Awareness Month.
Genine (02:39):
Yes.
Stephanie (02:39):
And had this same discussion about, you know, what
does it really do for the, forthe community?
And it was one of our mostdownloaded podcasts to date,
because I think it's a, a topicthat people want to hear about
and learn about.
And this is a frank conversationand a real conversation.
We're not trying to be tellingour audience what we think they
(03:00):
wanna hear.
This is about autistic people,how this month is supposed to
look versus how it really doeslook.
Genine (03:08):
Right as in any other community it's, it's difficult
because there's some divisionbecause in the early inception,
there was a move movement tolight it up blue and, and things
like that.
But that was started by anorganization that wasn't
necessarily listening toautistic voices.
It was a for-profit organizationthat wasn't really centered
(03:30):
around autistic people.
That's not where your mindshould be going, if it is for
and built around those voices,those are the voices that should
be amplified.
That that's what you're supposedto be doing.
Stephanie (03:44):
Well as a center for independent living.
That's what, that's what ourmission is.
We do everything based onfeedback and action from, from
the disability community.
And I think it's important torecognize when there's one side,
there's another side, right?
It's about the individual at theend of the day.
Genine (04:03):
And, and while he's not saying a whole lot, I am never
his voice, right.
I don't ever speak for him.
He speaks for himself.
You know, we like to say we'really, or we are an accomplice,
an accomplice, isn't a bad word.
When it comes to that, we willhelp him and the greater
community accomplish what theywant to accomplish and amplify
(04:25):
their voices.
Stephanie (04:26):
So when it comes, when we're talking about autism
awareness, Autism AcceptanceMonth, I prefer to call it
Autism Acceptance Month.
And I've seen that.
Yeah, I've seen that shift.
So I'm really happy to see thatsometimes people get so caught
up in, especially when it comesto autism, that it's children,
it's, it's babies, it's, it'ssmall children.
(04:47):
And I think we're gonna get intothis later about, you know, what
does that look like when, when,when we're talking adult, but
for this month, we, as a centerfor independent living, wanna
make sure we're giving outinformation that actually makes
a difference.
Right?
And, and so we would ask when itcomes to inclusion, that's a,
you know, that's a hot wordthese days, inclusion, and
(05:09):
that's something that's that ourorganization has been built
around.
So it's not new to any centerfor independent living, but glad
to see that it's becoming moremainstream and people are, are
recognizing that there should bemore inclusive practices across
the board, but rather thanhaving a person with autism and
autistic person try to fit intothat mold of our neurotypical
(05:33):
society, what, why can't, youknow, and I think I've heard you
speak on this before.
Why can't it be the reverse?
Let's try to put some actioninto place where the, where
we're fostering inclusion, butnot by forcing something that
doesn't fit.
Genine (05:45):
Exactly.
And, and part of that has beenwhat we've learned by some of
our, what we now see as maybeshortcomings failures and
because is it okay if I sharehow old you are?
Jacob (05:59):
Yes.
Genine (05:59):
Yeah.
Okay.
Jake will be 25.
So he's obviously aged out ofthe school system, but looking
back now, I see so many thingsthat we got wrong and that the
school system got wrong.
And then if I could rewritethings, I would, there were so
many times that we were tryingto fit him, you know, he's a
(06:20):
square peg and we're, we're,we're pounding a square peg into
a round hole.
And instead of listing all ofhis amazing, incredible
strengths, we're trying to fithim into a pattern of, okay,
this is how a neurotypical childlearns, this is how he learns
let's play on those strengths.
(06:41):
And let's build on that.
And why can't some of theneurotypical kids that he's
around be involved in thatbecause in the end, everybody
benefits because they're goingto go out into the community,
into society.
And they're going to besurrounded by a lot of very
different people.
Neurodiversity, isn't justautism, it's ADHD, it's
(07:03):
dyslexia.
It covers a vast variety ofbrain function.
Not everybody's brain is thesame.
It would benefit every child tolearn different.
Not everybody learns the same itwould just benefit everybody by
being included.
And I understand that it'sdifficult on that level to teach
(07:25):
every child individually.
Stephanie (07:27):
It's a shift.
It's a different way of lookingat an IEP, for example, or, or
inclusion in a classroom.
Yeah.
And sometimes, you know, we haveseen through the work that we do
, um, inclusion doesn't mean thesame thing to everybody.
Genine (07:43):
All of the things that I'm sharing today are our
individual experiences.
This is not a, you know, aguidebook for anybody else.
Jake is an individual.
We are individuals.
This is not the holy grail.
Stephanie (07:55):
But I think that's why our previous podcast was so
well received because it's anhonest, uh, discussion about
real life.
Yeah.
And a family that experiences itevery day.
Genine (08:08):
Yeah.
Yeah.
We have pivoted, um, we've beenwell and there's, you know,
there's a saying, when you know,better, you do better.
We have, we have shifted amillion times, okay?
We've learned that we should nothave been, been doing that.
Stephanie (08:22):
And I think, you know, I know you've talked a lot
or you've talked to mepreviously about what it's like
to experience the world in, inCOVID times with social
isolation and things like that.
And, you know, welcome to a theworld of an autistic person.
(08:39):
Yeah.
The whole world went bananasbecause they were socially
isolated and they couldn't seetheir friends and they couldn't
do this and they couldn't dothat.
And not just autistic people.
That's what it's like being aperson with a disability, a
disabled person.
Stephanie (08:54):
Mm-hmm.
(08:54):
Like, it's very socially isolating.
And there were people who werejust, you know, and still
reeling from those months orthat year that they spent being
isolated.
That's reality for a lot ofpeople.
And I don't mean to downplaythat it, that it really sent
some people into some shockwaves, but, but please
(09:16):
understand and be empathetic.
That, that is the day to daylife of, of some people.
Stephanie (09:22):
Right.
Let's talk about identitylanguage.
Again, a center for independentliving is it listens to the
community of the disabled.
Genine (09:31):
Yes.
Stephanie (09:32):
And we get questioned a lot for the language of that
we use.
I just use the word disabled.
That might offend some, somepeople I've used the word
autistic just in this podcast.
I've used person with autism.
It is an individual choice.
I believe.
And you know, while you can'tget it right every time, if
you're generally speaking abouta population, what you can do is
(09:53):
listen to an individual and usethose per references.
Genine (09:56):
Right.
What I've learned.
And I am not part of thecommunity.
I am an accomplice.
I am an ally.
So what I try to do is be very,very careful.
I always defer to theindividual.
I defer to Jake, whatever hewants us to do, that's what
we're going to do.
I will defer to, to theindividual.
(10:17):
And then I will defer to thecommunity.
What I've learned is disabled isnot a dirty word.
It's an empowering word.
And the disabled community istaking that word back.
It it's, it's not something tobe ashamed of.
It's empowering.
Um, Jake, what do you, when yourefer to yourself you say that
you are
Jacob (10:38):
Empowering.
Genine (10:39):
You are empowered because you are
Jacob (10:41):
Autistic.
Genine (10:41):
You are autistic.
Jake uses identity firstlanguage.
So when we that's, what we use.
Years ago, I would have neverused that because most
professionals in socialservices, even in the medical
community, you were verystrictly taught to use person
(11:03):
first.
You are a person with adisability, and that was
hammered into our heads over andover and over again.
And you were even told tocorrect people.
But the problem with that wasnobody asked the autistic
community what they wanted and,overwhelmingly, autistic adults
want to be referred to asautistic.
(11:26):
It is part of who they are.
Jake.
When, when you say you'reautistic, why do you say that?
Jacob (11:31):
You are special?
Genine (11:34):
Yeah.
You're special because you'reempowered.
Jacob (11:36):
Yes.
Genine (11:37):
It's empowering.
Jacob (11:38):
It's empowering.
Genine (11:39):
So that's, that's how he feels.
And I'm never going to take thataway from him.
Stephanie (11:43):
That is amazing.
I think the world can get socaught up in language and
wanting to try to say the rightthing.
And I will, I, I know that wehere had gotten caught up in
that.
Genine (11:55):
Oh, I did.
I did 100%
Stephanie (11:57):
Even working at a center for independent living.
You know, what's the rightlanguage.
I tear down those barriers nowbecause it is individual, but
certainly there is offensivelanguage.
Genine (12:07):
Yes, no, I will always defer to the individual because
I'm, I'm positive that there areprobably autistic people out
there who prefer to use personfirst language, then absolutely.
I will absolutely honor yourwishes.
100%.
That is your, um, the only thingI will not stand for is somebody
correcting his language orcorrecting my language outside
(12:29):
of, of our circle, correcting usthat, that I, I won't, I won't
let you do.
We also have kind of tuned intothe adult autistic community and
they are very much now trying toshy away from functioning
labels, high functioning,autism, low functioning autism,
(12:51):
because what that really does isit, first of all, it can deny
services.
If you label somebody as a highfunctioning autistic person, you
can, you know, sometimes thatwill just deny them services.
Um, also if you label somebodyas low functioning, autistic,
(13:11):
sometimes you assume somethingabout their intelligence.
Um, so they're really trying toget away from those labels.
It also doesn't help theindividual whom you're speaking
about.
Um, if you really cared aboutthem, you would ask what their
needs are.
Is there any spec, anythingspecific that I can do to help
them plus in Jake's case, is itokay if I share something?
Jacob (13:33):
Yes.
Genine (13:33):
Um, his function is fluid.
So is mine.
Nobody's asking me how I'mfunctioning.
You know, what's yourfunctioning label as a mom
today?
Sometimes I'm a pretty lowfunctioning mother.
Nobody's asking me, no one asksme.
No one asks me when I wake up inthe morning what my, you know,
what I'm functioning at.
It's kind of, it's kind of rude.
(13:54):
Um, we're kind of trying to getaway from that.
You know, very few otherdiagnoses are like, it's, it's
just kind of, and I've noticedthat, you know, in conversation
with people, when I, if I chooseto reveal that, you know, I have
a son who's autistic, sometimesthat's one of first questions
(14:16):
they will ask me, oh, is he lowor high functioning?
First of all, my first questionis, why are you asking me that?
And what...
Stephanie (14:21):
That's disappointing.
Genine (14:23):
It's it is slightly disappointing.
Stephanie (14:25):
What does it matter?
Genine (14:25):
It doesn't matter.
Stephanie (14:27):
I'm sorry.
I'm still getting, I can't getover the fact that someone might
correct an autistic person'slanguage or identity language.
Genine (14:33):
Yeah.
I've not, I've not witnessedthat in person.
I have witnessed that on socialmedia.
Stephanie (14:39):
Unbelievable.
Jake, I wanted to just talk toyou a little bit about special
interests.
And would you like to share aspecial interest that you have
with us?
Jacob (14:50):
Yes.
And my special interest isSpider-Man.
Genine (14:53):
Yeah.
Stephanie (14:54):
Okay.
Genine (14:54):
We nailed it down to, to , we nailed it down to one
specific topic.
So go ahead.
Jacob (15:00):
Well, I'm going to start about the origin of Spider-Man.
Basically.
It's like this (15:06):
Peter Parker is just your average wall flower
growing up in Queens.
Basically.
He's good with his teachers, butnot so good with his social
life.
And, uh, and when he went to ascience expo, he came across, an
(15:27):
ordinary spider that has beenradiated with radiation.
And then once he got bitten, hegained some kind of unique
spider powers, the ability tocrawl walls and the sixth sense
called spider sense.
And, and he thought he could useit, his powers to be, um, as
(15:51):
popular as he wanted to be, butan ongoing, he, he thought he
had all everything, but hisUncle Ben and told him"with
great power comes greatresponsibility," but he, but he
saw a robber trying to rob andget some money, uh, under the
(16:14):
fight promoter.
But he let him get away andongoing, he exited.
Yeah and when he came back fromhis Uncle Ben and to his house,
to the house, he accidentallysaw the police that, that
someone that they said issomeone shot his Uncle Ben.
(16:37):
And he, vowed to get revenge onwhat he did to who on the killer
who killed him, but ongoing backin an abandoned warehouse, he
found the same guy that he letgo back when he was trying to
rob, and basically it was allPeter Parker's fault.
(16:59):
So basically, he learned withgreat power comes great
responsibility.
He failed to live up to thatlegacy from his Uncle Ben.
And that's why he became theAmazing Spider-Man.
Stephanie (17:13):
Wow.
Thank you, Jake.
Jacob (17:15):
You're welcome.
Stephanie (17:17):
I had no idea.
.
That was wonderful.
Thank you so much for sharing.
Jacob (17:21):
You're welcome.
Genine (17:23):
And Spider-Man's your favorite, right?
Jacob (17:25):
Yes.
Genine (17:25):
Yeah.
Stephanie (17:26):
I never heard that story.
Jacob (17:27):
It's a rare known story.
Stephanie (17:31):
Yeah.
So Peter Parker is Spider-Man?
Jacob (17:35):
Yes.
He always has been.
Stephanie (17:37):
That was awesome.
Thank you so much, Jake.
Jacob (17:39):
You're welcome.
Stephanie (17:40):
So Genine, let's talk a little bit about the
experience of you and yourfamily and Jake had when he aged
out of school.
Genine (17:48):
Oh boy.
Well, yeah, it's hard because,you know, we like to refer to it
as jumping off the cliff,because what happens is, uh, in
the state of Pennsylvania andmost other states, he is allowed
a, uh, you know, individualizededucation until he's 21.
So then he ages out of schooland, you know, depending on your
(18:14):
child's abilities, there's notmuch after that.
So you either have to find theresources or build the resources
to build a life for them afterthat.
Um, it's just, it's really,really difficult because the
(18:36):
community resources don't exist.
Stephanie (18:39):
Right.
So what I've seen and what we'veseen in our own community here
locally is there's, there'sadequate support through K
through 12 through that process.
Genine (18:53):
Generally speaking.
Stephanie (18:54):
Generally speaking, because it it's almost as if no
one really thought,"Hey, whathappens when an autistic person
becomes an adult?" And it's onlybeen recently that I think
that's starting to be talkedabout and brought to advocates
and organizations like ours,like, hey, what happens, time
doesn't stop does...
Genine (19:15):
Does not stop.
They all grow up.
Stephanie (19:16):
Right.
And it's a different world outthere for, for an, an autistic
adult.
Genine (19:22):
Yes.
Yeah.
You know, it depends onindependence level.
You know, it depends on, youknow, familial support.
It depends on community support,you know, are they able to
maintain a job?
You know, what barriers, whatother co-occurring issues do
they have?
Stephanie (19:39):
Well, it goes, look, I, I see it this way, when we're
gonna talk about firstresponders in a minute, it goes
from, oh, that's an, that's a,that's an autistic child who
needs protecting and, and, youknow, through, through that sta
those stages of childhood, notdisagreeing, but adulthood comes
and it, now it has dramaticallyshifted from, this is a child
(20:01):
with autism that needs to beprotected to what is this person
doing?
Is that a person a threat?
And yes, I wish that was not thecase.
We've seen it in, in manydifferent, terrible news reports
yes.
Across our country.
And I, I'm not try, I'm nottrying to oversimplify it, but
it can be as, as simple as that,when you're looking at it's a
(20:22):
shift, it's no longer, but it'sthe, it's the same exact person.
Genine (20:26):
Yes.
It's the same person.
And it also goes back toinclusion if they were included
in, in everything, in school, inthe community, from the time
that they were younger.
And instead of that diametricshift happening at some point
along the education where thenthey were not, you know, quite
as included in the classroomsand you know, where you did see
(20:50):
them grow up where they werealong with their peers in
certain things, you know, thenmaybe it wasn't like, oh, okay,
here's this adult now, what dowe do?
Stephanie (21:00):
Well, I think it's important for everyone to
understand why it's so, why weare so driven to talk to every
first responder that we can.
And fortunately our local policedepartment allowed us to come in
and talk with every officer on,on their force about disability
in general and, and autism, andhad great response.
(21:21):
And I think I'd like to ask youto share one of the stories that
you shared with them that reallyhit home with them that put it
in their minds as, okay, this ishow this is what you're talking
about.
Genine (21:30):
Yeah.
That's something that was so,and he absolutely loved that
when we got to spend time withthe Reading Police Department.
That was probably, he was soproud to be able to do that.
Right?
I mean, can you, you wanna talka little bit about that?
Jacob (21:45):
No.
Genine (21:45):
No.
Okay.
Um, yeah, he was so psyched tobe able to do that.
Um, and honestly, that'ssomething that has been really,
that has been so important tome.
And it's, you know, I wanna sayit was 2015 when it happened.
So, um, and this is the, this iskind of what clicked in my head.
(22:07):
So we were, um, in the airportin Philadelphia, getting ready
to get on a flight to NewOrleans.
And Jake is not a, a little guy,um, he's six foot and he's, um,
270 on a bad day.
So not a, not a child.
(22:27):
Um, and at that point he was, hewas not a little boy either, but
in my mind, this is, this is my,this is my little baby boy.
So I don't see him any other waythan that.
So, you know, we are inPhiladelphia, International
Airport, we're throwing our bagsup on the, on the, you know, the
baggage claim.
We're, we're doing what you doin the airport.
(22:50):
And all of a sudden, outta thecorner of my eye, I see one of
the guards on the TSA platform.
And he is zeroed in on my sonsquare.
And I thought, why are youlooking at my kid?
Like what what's going on?
And it clicked my son asadorable and wonderful, and 100%
(23:12):
non-threatening, looks sosketchy and suspicious to an
untrained eye right now.
And all that officer with amachine gun is doing is what
he's trained to do-- is pick outpeople who are suspicious.
Um, is it okay if I sharesomething?
(23:34):
Um, kind of private?
Jacob (23:35):
Yes.
Genine (23:36):
Yeah.
So Jake has, what's known asstims, so it's self stimulatory
behavior.
Um, a lot of times when he'swaiting, even if he's waiting in
line and, and it's quiet, hewill rock back and forth.
He will pace.
He will ring his hands.
It's a lot of repetitive bodymovements.
Um, if he's anxious, thosemovements get bigger, they're a
(23:59):
little more pronounced.
Um, sometimes he's scripting.
So he's kind of saying thingsunder his breath.
So imagine if you are in anairport and you are looking for
suspicious activity, and you'vegot a six foot person who's in
baggage claim, ringing his handsback and forth.
And so at that point, I realizedthat my child wasn't a sweet
(24:24):
little autistic boy.
He looked like a threat and itscared the daylight out of me.
And it was at that point, I hadthis visceral reaction.
And I remember saying to myhusband, I'm like,"Everybody's
gotta know, like, we've gottateach everybody that this isn't
suspicious behavior.
It's just because he has autism.
(24:44):
It's just because this is theway it is.
Like, I just remember feelingthis wave of panic.
Like I needed to get everysecurity guard, every police
officer, every, you know, everycop, every ambulance to like
everybody to understand thatthis isn't suspicious because
then you start hearing policereports of awful things
(25:06):
happening.
Stephanie (25:07):
And that's exactly why it's so important to get an
autistic person in front offirst responders.
Genine (25:15):
I have always said, and I will maintain this.
And I hope it helped theofficers last year.
You don't need a professionalseminar with somebody who's
going to tell you aboutneurodiversity and self
stimulatory behavior.
You don't need me up thereyapping, you need 15 minutes
alone hanging out with my son.
Stephanie (25:35):
Right.
Genine (25:35):
That's it.
Stephanie (25:36):
Well, I think that's what was so remarkable about the
training.
Genine (25:40):
Yeah.
Stephanie (25:40):
They, they didn't want, they could have hired
anybody to come in and, and, andlecture them on autism.
Or disability.
We could, I, I could have donethat.
And their police chief was veryopen and transparent about it
needs to come directly from thecommunity because that's
important to them.
And hearing that as, as a leaderof a center for independent
(26:01):
living, I was like, we're there.
You get what we're trying to do.
Genine (26:04):
Yeah.
And I, and I want, I want to be,be able to have to be in a room
where they can ask questionsthat they feel like they're
uncomfortable asking, look, youcan ask me anything.
I am not offended by anything,anywhere.
Anytime you can ask me, like weeven have, you know, a, a little
scenario when I get pulled over,because I'm not sure what he's
(26:29):
going to do or say to a policeofficer, if, and when I get
pulled over for speeding.
I'm not sure what his reaction'sgoing to be.
So I now, you know, have areally small blurb that I will
say to an officer, if I getpulled over,"Officer, here's my
license and registration, theyoung man sitting next to me is
my son.
He's autistic.
(26:50):
I'm not sure what he's going tosay or do.
Just so you know, there's a wildcard next to me."
Stephanie (26:55):
Right.
And from the feedback that wegot from the officers that we
talked with last summer, that'sexactly what they would want to
know.
Yeah.
Our local police force does notwant bad outcomes.
Nobody does.
And that's the information Ithink that was, was just not,
they'd never had it.
Genine (27:12):
Yeah.
I just wanna give you a heads upbecause chances are, he's gonna
be really mad at me because Ibroke the law and I'm gonna get
a ticket and his dad's gonna beso mad that I gotta, that I
gotta speeding ticket and I'mgonna get it.
Mom got pulled over that andhe's gonna dime me out.
The minute his dad walks in thedoor, mom got pulled over by a
cop today, dad, she wasspeeding.
Like, that's how it's gonna playout.
(27:33):
But like, I don't know if he'sgoing to say anything.
So I'm going to give saidofficer a heads up the moment
I'm done doing my business, justin case.
Stephanie (27:43):
I know that we're trying to continue that kind of
training and that kind ofoutreach to all of our local
first responders, because itreally was meaningful for both
sides.
Genine (27:54):
Yeah.
It's super important because youare going, it, it's not you
might, you are going to comeacross someone who is autistic.
Somebody who neuro diverse, youare going to come across
somebody who needs you to be alittle empathetic.
Stephanie (28:09):
Yeah.
And it was a positiveexperience.
I understand Jake got somepatches and, and a hat that's
that's really cool.
Genine (28:16):
And he got to meet the dog,
Stephanie (28:18):
The canine!
Jacob (28:19):
He was part of the canine unit.
Genine (28:20):
Yeah.
Stephanie (28:21):
Yeah.
That's great.
Genine (28:22):
We wanted to be part of the taser day, but they wouldn't
let us,
Jacob (28:26):
I didn't want to get tased.
Speaker 3 (28:28):
I don't wanna get tased either, Jake.
Genine (28:29):
I wanted to be the one who was doing the tasering, but
they didn't.
They said, no.
Stephanie (28:33):
Well, at least you asked.
Genine (28:35):
I asked, I did.
Stephanie (28:36):
So I wanna just touch on one more thing before we wrap
up.
I don't wanna, I mean, this,this topic in and of itself
could be an entire podcast.
It it's particularly relevant tothe autistic community.
And I wanna discuss it becauseif we're talking about autism
awareness and acceptance, whyare we still talking about
conservatorships andguardianships?
Genine (28:56):
Yeah I'm not sure.
Um, that is something we havechosen absolutely not to do.
We are not his voice.
He has his own voice.
We partner with him in his care.
Stephanie (29:08):
Can you share why?
I don't think people understandwhat that means when you
officially have aconservatorship or a
guardianship assigned, it's notfor the protection of the
individual.
Genine (29:20):
Not necessarily.
And I will also say that it isvery different from state to
state, but in the state ofPennsylvania, when you gain
guardianship over your child,they have no rights.
Um, they have no rights to theirmedical care.
They have no rights to theirfinancial care.
They have, they, you you'veessentially stripped them of all
(29:40):
of their rights.
We have chosen not to do that.
Jake is a thoughtful,intelligent person who is more
than capable of making his owndecisions.
Sometimes he needs help tofigure things out.
So we work as a team to do that.
There are alternatives to that.
We will continue to work as ateam forever.
Stephanie (30:01):
I wanted to just bring it up because I don't
think people understand thatthere are alternatives.
Genine (30:06):
Yes.
Stephanie (30:07):
And from my perspective, I'm not saying
there's not a place for it.
(30:11):
Yes.
Stephanie (30:11):
There absolutely is much like everything, but it
absolutely should not be thefirst course of action for
someone with an intellectualdisability that is having a
crisis or a person with mentalhealth concerns that is having a
crisis or going throughsomething, or even a person with
a disability who the medicalcommunity thinks cannot take
care of themselves.
So there are alternatives outthere.
(30:33):
There's home and community basedservices.
There's mental health support.
You could assign a power ofattorney as opposed to a
guardianship which, if you wantto go that route, then I believe
everybody needs to be fullyeducated on what exactly that
means.
And what it means for theindividual, because getting them
reversed as we have seen playout over the last year is very
(30:56):
difficult.
Genine (30:58):
It's next to impossible.
And it, yeah.
It's just something that we havechosen not to do.
Stephanie (31:05):
I appreciate your, your discussion on it because
people really believe, Genine,that it's the right thing to do.
It's, it's, it's really helpfuland supportive for the person.
And that's not really the case.
I don't think that everyone hasthe full picture.
Genine (31:18):
We have been able to, I mean, luckily, um, can, can I
share something personal?
Jacob (31:23):
Yes.
Genine (31:24):
Luckily Jake doesn't have a whole lot of physical
medical issues.
So there hasn't been anythingthat we've had to explain to
him, but I will say that he didhave one medical procedure.
He was a minor at that point,but you know, we were still able
to navigate through that andstill have him, again, he was a
minor.
So that wasn't necessarily anissue as to, you know, who was
(31:47):
making decisions.
He was a minor at that point,but still we were able to make
decisions as a team.
We had a, a thoughtful doctor.
We are his parents and he wasable to kind of, you know, still
have input.
I, he was 17 or 18 at the time.
So he was in a old, you know, hewas older at that point.
It's just not something I feelcomfortable doing.
Stephanie (32:09):
It's so important to understand what you're signing
up for.
Genine (32:13):
Yeah.
I'm just not,
Stephanie (32:14):
And I'm not, I'm not bashing it.
I'm just saying there'salternatives.
Genine (32:19):
Yes.
Stephanie (32:19):
And let's make that the first go-to choice rather
than
Genine (32:23):
It should be your final...
Stephanie (32:25):
It's a last resort.
Genine (32:26):
It should be your absolute last resort.
Stephanie (32:28):
And shouldn't, shouldn't we think of it that
way?
Genine (32:30):
Yes.
Stephanie (32:30):
I mean, it's very hard to, to reverse.
Genine (32:32):
Yes.
Stephanie (32:33):
And unfortunately once, once someone's in one, the
odds are stacked against you.
Yes.
The individuals often do noteven appear at the court
hearings.
They don't have to, it's it'sreally rife with, with problems.
Genine (32:45):
They're almost considered a non, a non voice at
that point.
They, they have no voice.
Stephanie (32:50):
Thank you for sharing your experience and thoughts on
that.
I think it's important just forpeople to understand, make your
own decisions.
Of course.
But know what, what you'redoing.
Understand the ramifications of,of what it is that you're
choosing to do.
Before we wrap up, Jake, did youwanna have any last, any last
thoughts?
Any last words on beingautistic?
Genine (33:11):
What's it feel like to be autistic?
Jacob (33:14):
Well, it still feels empowering to some people.
Stephanie (33:17):
Yeah.
Great.
I understand.
You're the CEO of a business.
Jacob (33:22):
Yes.
Uh, it's a Cookie Break withJake.
I, I go to some places todeliver cookies and tell
everyone about autism and how tohandle it.
Stephanie (33:31):
That is amazing.
Jacob (33:33):
Thank you.
Stephanie (33:34):
What kind of cookies do you make?
Jacob (33:35):
Well, we made like a peanut butter blast.
It kind of like, like it hasReese's in it.
Stephanie (33:43):
Is that your favorite candy?
Jacob (33:44):
Yes.
Stephanie (33:45):
Okay.
yeah, mine too.
Jacob (33:47):
Yeah.
And we usually make a basicchocolate chip just in case if
anyone has a nut allergy.
Stephanie (33:53):
Very thoughtful.
And how long have you been doingthis?
Jacob (33:57):
Well, a very long time, I just can't think very far back
though.
Stephanie (34:03):
Okay.
Well, it sounds like fun.
Jacob (34:05):
Thank you.
Stephanie (34:06):
It sounds like you get to go to a lot of
interesting places.
Jacob (34:09):
Yeah.
I went to a lavender farm in anaviary.
I even went to a friend's farmand take a look at some goats.
Stephanie (34:18):
Oh my gosh.
A goat farm, a lavender farm, anaviary.
That sounds like...
wonderful.
Jacob (34:25):
Yes.
Stephanie (34:26):
Well thank you for sharing Jake.
Jacob (34:28):
Thank you
Stephanie (34:28):
Genine, any last thoughts before we, before we
wrap up?
Genine (34:32):
No, I don't think so.
I just think, I think for somany years, um, you associated
autism with, you know, you wouldhear the words"tragic" or, you
know, it would be the plight of,I think the, this, the shift
needs to be that it isempowering.
It needs to be the focus on thestrength.
(34:54):
Um, the, the dynamicness, forlack of a better words of, you
know, autistic individuals andthe fact that it's not broken,
you know, we've, we've alwaystold him it's the focus on the
positive and that's where itneeds to be.
Yes, there's a list of thingsmaybe that he can't do.
But I have a really long list ofthings that I can't do too.
(35:17):
So the focus really needs to beon the list of amazing things
that he can do and that he'sspectacular at.
And I think that's the, theneuro diverse brain is
unbelievable.
And I think that's where theshift needs to be.
It needs to be, you know, thisappreciation, this positive spin
(35:39):
it's, it's not broken, you know,just, there are lots of
different kinds of bears andthere's lots of different kinds
of brains.
And, you know, I might have aMacBook and he might have a
Windows and it's not bad, it'sjust different.
Stephanie (35:53):
And on that note, I think we're gonna wrap up.
Thank you both for joining us onDisability Talks and we'll see
you next time.
Genine (36:00):
Thank you!
Jacob (36:01):
We'll see you next time.
Stephanie (36:02):
All right.
Take care, everybody.
Outro (36:42):
Thanks for tuning in to this episode of Disability
Talks.
Want to be a part of the ongoingconversation?
Visit our website atabilitiesinmotion.org or connect
with us on social media.
Welcome to Disability Talks, a podcast produced by
Abilities in Motion.
I'm your host, Ed Granger.
Join us to encounter uniqueperspectives on accessibility
and independence, and to hearstories from everyday people
living their most independenteveryday lives, where essential
conversations find their place.
Let's talk.
Stephanie (00:24):
Welcome to Disability Talks.
I am your special host fortoday's episode.
My name is Stephanie Quigley.
I am the Executive Director ofAbilities in Motion, and this is
a special episode with some veryspecial guests this morning.
I have Genine Bashore advocate,mom friend, previous employee of
Abilities in Motion.
And with her, we have her sonJacob Beshore.
(00:46):
Welcome.
Jacob (00:47):
Hello.
Stephanie (00:47):
Hello.
We're doing special kind of pastthe mic edition.
You're a regular host, Ed is,has been gracious enough to let
me handle today's podcast.
I'm really excited to have youboth with us, um, as we talk
about autism.
So I'll just get things startedby, by talking about April is as
(01:08):
we know in our community, AutismAwareness Month and Jake is
autistic.
Genine (01:15):
Yes.
Jacob (01:15):
Yes.
Stephanie (01:16):
So let's just dive right into Autism Awareness
Month and our general thoughtsof about, what does that bring
to the autistic community?
If anything.
Genine (01:26):
I actually had to look it up and I was surprised to
find out that it was actuallystarted in 1972, but it wasn't
until November 1st, 2007, thatthe UN declared April 2nd, um,
World Autism Day.
So it's, it's been recognized.
Um, there's kind of been a shiftover the past few years of it
(01:49):
being more kind of turning fromAutism Awareness Month to Autism
Acceptance Month.
We kind of like to describe itas okay, if you're aware that
someone is in the room, that's,that's really cool.
Um, if you accept thatsomebody's in the room, it, it
makes a much different point.
(02:09):
It it's great that you're awareof autism.
What are you doing to accept it?
We'd love for the greatercommunity to move the needle
from acceptance to pride andappreciation.
Wouldn't it be great if it was,you know, April was Autism Pride
Month.
Stephanie (02:25):
I think why I was excited to have you and Jake on
the podcast today was we did apodcast a few year, probably in
2019, the three of us.
And we recorded that podcast, Ithink right around Autism
Awareness Month.
Genine (02:39):
Yes.
Stephanie (02:39):
And had this same discussion about, you know, what
does it really do for the, forthe community?
And it was one of our mostdownloaded podcasts to date,
because I think it's a, a topicthat people want to hear about
and learn about.
And this is a frank conversationand a real conversation.
We're not trying to be tellingour audience what we think they
(03:00):
wanna hear.
This is about autistic people,how this month is supposed to
look versus how it really doeslook.
Genine (03:08):
Right as in any other community it's, it's difficult
because there's some divisionbecause in the early inception,
there was a move movement tolight it up blue and, and things
like that.
But that was started by anorganization that wasn't
necessarily listening toautistic voices.
It was a for-profit organizationthat wasn't really centered
(03:30):
around autistic people.
That's not where your mindshould be going, if it is for
and built around those voices,those are the voices that should
be amplified.
That that's what you're supposedto be doing.
Stephanie (03:44):
Well as a center for independent living.
That's what, that's what ourmission is.
We do everything based onfeedback and action from, from
the disability community.
And I think it's important torecognize when there's one side,
there's another side, right?
It's about the individual at theend of the day.
Genine (04:03):
And, and while he's not saying a whole lot, I am never
his voice, right.
I don't ever speak for him.
He speaks for himself.
You know, we like to say we'really, or we are an accomplice,
an accomplice, isn't a bad word.
When it comes to that, we willhelp him and the greater
community accomplish what theywant to accomplish and amplify
(04:25):
their voices.
Stephanie (04:26):
So when it comes, when we're talking about autism
awareness, Autism AcceptanceMonth, I prefer to call it
Autism Acceptance Month.
And I've seen that.
Yeah, I've seen that shift.
So I'm really happy to see thatsometimes people get so caught
up in, especially when it comesto autism, that it's children,
it's, it's babies, it's, it'ssmall children.
(04:47):
And I think we're gonna get intothis later about, you know, what
does that look like when, when,when we're talking adult, but
for this month, we, as a centerfor independent living, wanna
make sure we're giving outinformation that actually makes
a difference.
Right?
And, and so we would ask when itcomes to inclusion, that's a,
you know, that's a hot wordthese days, inclusion, and
(05:09):
that's something that's that ourorganization has been built
around.
So it's not new to any centerfor independent living, but glad
to see that it's becoming moremainstream and people are, are
recognizing that there should bemore inclusive practices across
the board, but rather thanhaving a person with autism and
autistic person try to fit intothat mold of our neurotypical
(05:33):
society, what, why can't, youknow, and I think I've heard you
speak on this before.
Why can't it be the reverse?
Let's try to put some actioninto place where the, where
we're fostering inclusion, butnot by forcing something that
doesn't fit.
Genine (05:45):
Exactly.
And, and part of that has beenwhat we've learned by some of
our, what we now see as maybeshortcomings failures and
because is it okay if I sharehow old you are?
Jacob (05:59):
Yes.
Genine (05:59):
Yeah.
Okay.
Jake will be 25.
So he's obviously aged out ofthe school system, but looking
back now, I see so many thingsthat we got wrong and that the
school system got wrong.
And then if I could rewritethings, I would, there were so
many times that we were tryingto fit him, you know, he's a
(06:20):
square peg and we're, we're,we're pounding a square peg into
a round hole.
And instead of listing all ofhis amazing, incredible
strengths, we're trying to fithim into a pattern of, okay,
this is how a neurotypical childlearns, this is how he learns
let's play on those strengths.
(06:41):
And let's build on that.
And why can't some of theneurotypical kids that he's
around be involved in thatbecause in the end, everybody
benefits because they're goingto go out into the community,
into society.
And they're going to besurrounded by a lot of very
different people.
Neurodiversity, isn't justautism, it's ADHD, it's
(07:03):
dyslexia.
It covers a vast variety ofbrain function.
Not everybody's brain is thesame.
It would benefit every child tolearn different.
Not everybody learns the same itwould just benefit everybody by
being included.
And I understand that it'sdifficult on that level to teach
(07:25):
every child individually.
Stephanie (07:27):
It's a shift.
It's a different way of lookingat an IEP, for example, or, or
inclusion in a classroom.
Yeah.
And sometimes, you know, we haveseen through the work that we do
, um, inclusion doesn't mean thesame thing to everybody.
Genine (07:43):
All of the things that I'm sharing today are our
individual experiences.
This is not a, you know, aguidebook for anybody else.
Jake is an individual.
We are individuals.
This is not the holy grail.
Stephanie (07:55):
But I think that's why our previous podcast was so
well received because it's anhonest, uh, discussion about
real life.
Yeah.
And a family that experiences itevery day.
Genine (08:08):
Yeah.
Yeah.
We have pivoted, um, we've beenwell and there's, you know,
there's a saying, when you know,better, you do better.
We have, we have shifted amillion times, okay?
We've learned that we should nothave been, been doing that.
Stephanie (08:22):
And I think, you know, I know you've talked a lot
or you've talked to mepreviously about what it's like
to experience the world in, inCOVID times with social
isolation and things like that.
And, you know, welcome to a theworld of an autistic person.
(08:39):
Yeah.
The whole world went bananasbecause they were socially
isolated and they couldn't seetheir friends and they couldn't
do this and they couldn't dothat.
And not just autistic people.
That's what it's like being aperson with a disability, a
disabled person.
Stephanie (08:54):
Mm-hmm.
(08:54):
Like, it's very socially isolating.
And there were people who werejust, you know, and still
reeling from those months orthat year that they spent being
isolated.
That's reality for a lot ofpeople.
And I don't mean to downplaythat it, that it really sent
some people into some shockwaves, but, but please
(09:16):
understand and be empathetic.
That, that is the day to daylife of, of some people.
Stephanie (09:22):
Right.
Let's talk about identitylanguage.
Again, a center for independentliving is it listens to the
community of the disabled.
Genine (09:31):
Yes.
Stephanie (09:32):
And we get questioned a lot for the language of that
we use.
I just use the word disabled.
That might offend some, somepeople I've used the word
autistic just in this podcast.
I've used person with autism.
It is an individual choice.
I believe.
And you know, while you can'tget it right every time, if
you're generally speaking abouta population, what you can do is
(09:53):
listen to an individual and usethose per references.
Genine (09:56):
Right.
What I've learned.
And I am not part of thecommunity.
I am an accomplice.
I am an ally.
So what I try to do is be very,very careful.
I always defer to theindividual.
I defer to Jake, whatever hewants us to do, that's what
we're going to do.
I will defer to, to theindividual.
(10:17):
And then I will defer to thecommunity.
What I've learned is disabled isnot a dirty word.
It's an empowering word.
And the disabled community istaking that word back.
It it's, it's not something tobe ashamed of.
It's empowering.
Um, Jake, what do you, when yourefer to yourself you say that
you are
Jacob (10:38):
Empowering.
Genine (10:39):
You are empowered because you are
Jacob (10:41):
Autistic.
Genine (10:41):
You are autistic.
Jake uses identity firstlanguage.
So when we that's, what we use.
Years ago, I would have neverused that because most
professionals in socialservices, even in the medical
community, you were verystrictly taught to use person
(11:03):
first.
You are a person with adisability, and that was
hammered into our heads over andover and over again.
And you were even told tocorrect people.
But the problem with that wasnobody asked the autistic
community what they wanted and,overwhelmingly, autistic adults
want to be referred to asautistic.
(11:26):
It is part of who they are.
Jake.
When, when you say you'reautistic, why do you say that?
Jacob (11:31):
You are special?
Genine (11:34):
Yeah.
You're special because you'reempowered.
Jacob (11:36):
Yes.
Genine (11:37):
It's empowering.
Jacob (11:38):
It's empowering.
Genine (11:39):
So that's, that's how he feels.
And I'm never going to take thataway from him.
Stephanie (11:43):
That is amazing.
I think the world can get socaught up in language and
wanting to try to say the rightthing.
And I will, I, I know that wehere had gotten caught up in
that.
Genine (11:55):
Oh, I did.
I did 100%
Stephanie (11:57):
Even working at a center for independent living.
You know, what's the rightlanguage.
I tear down those barriers nowbecause it is individual, but
certainly there is offensivelanguage.
Genine (12:07):
Yes, no, I will always defer to the individual because
I'm, I'm positive that there areprobably autistic people out
there who prefer to use personfirst language, then absolutely.
I will absolutely honor yourwishes.
100%.
That is your, um, the only thingI will not stand for is somebody
correcting his language orcorrecting my language outside
(12:29):
of, of our circle, correcting usthat, that I, I won't, I won't
let you do.
We also have kind of tuned intothe adult autistic community and
they are very much now trying toshy away from functioning
labels, high functioning,autism, low functioning autism,
(12:51):
because what that really does isit, first of all, it can deny
services.
If you label somebody as a highfunctioning autistic person, you
can, you know, sometimes thatwill just deny them services.
Um, also if you label somebodyas low functioning, autistic,
(13:11):
sometimes you assume somethingabout their intelligence.
Um, so they're really trying toget away from those labels.
It also doesn't help theindividual whom you're speaking
about.
Um, if you really cared aboutthem, you would ask what their
needs are.
Is there any spec, anythingspecific that I can do to help
them plus in Jake's case, is itokay if I share something?
Jacob (13:33):
Yes.
Genine (13:33):
Um, his function is fluid.
So is mine.
Nobody's asking me how I'mfunctioning.
You know, what's yourfunctioning label as a mom
today?
Sometimes I'm a pretty lowfunctioning mother.
Nobody's asking me, no one asksme.
No one asks me when I wake up inthe morning what my, you know,
what I'm functioning at.
It's kind of, it's kind of rude.
(13:54):
Um, we're kind of trying to getaway from that.
You know, very few otherdiagnoses are like, it's, it's
just kind of, and I've noticedthat, you know, in conversation
with people, when I, if I chooseto reveal that, you know, I have
a son who's autistic, sometimesthat's one of first questions
(14:16):
they will ask me, oh, is he lowor high functioning?
First of all, my first questionis, why are you asking me that?
And what...
Stephanie (14:21):
That's disappointing.
Genine (14:23):
It's it is slightly disappointing.
Stephanie (14:25):
What does it matter?
Genine (14:25):
It doesn't matter.
Stephanie (14:27):
I'm sorry.
I'm still getting, I can't getover the fact that someone might
correct an autistic person'slanguage or identity language.
Genine (14:33):
Yeah.
I've not, I've not witnessedthat in person.
I have witnessed that on socialmedia.
Stephanie (14:39):
Unbelievable.
Jake, I wanted to just talk toyou a little bit about special
interests.
And would you like to share aspecial interest that you have
with us?
Jacob (14:50):
Yes.
And my special interest isSpider-Man.
Genine (14:53):
Yeah.
Stephanie (14:54):
Okay.
Genine (14:54):
We nailed it down to, to , we nailed it down to one
specific topic.
So go ahead.
Jacob (15:00):
Well, I'm going to start about the origin of Spider-Man.
Basically.
It's like this (15:06):
Peter Parker is just your average wall flower
growing up in Queens.
Basically.
He's good with his teachers, butnot so good with his social
life.
And, uh, and when he went to ascience expo, he came across, an
(15:27):
ordinary spider that has beenradiated with radiation.
And then once he got bitten, hegained some kind of unique
spider powers, the ability tocrawl walls and the sixth sense
called spider sense.
And, and he thought he could useit, his powers to be, um, as
(15:51):
popular as he wanted to be, butan ongoing, he, he thought he
had all everything, but hisUncle Ben and told him"with
great power comes greatresponsibility," but he, but he
saw a robber trying to rob andget some money, uh, under the
(16:14):
fight promoter.
But he let him get away andongoing, he exited.
Yeah and when he came back fromhis Uncle Ben and to his house,
to the house, he accidentallysaw the police that, that
someone that they said issomeone shot his Uncle Ben.
(16:37):
And he, vowed to get revenge onwhat he did to who on the killer
who killed him, but ongoing backin an abandoned warehouse, he
found the same guy that he letgo back when he was trying to
rob, and basically it was allPeter Parker's fault.
(16:59):
So basically, he learned withgreat power comes great
responsibility.
He failed to live up to thatlegacy from his Uncle Ben.
And that's why he became theAmazing Spider-Man.
Stephanie (17:13):
Wow.
Thank you, Jake.
Jacob (17:15):
You're welcome.
Stephanie (17:17):
I had no idea.
That was wonderful.
Thank you so much for sharing.
Jacob (17:21):
You're welcome.
Genine (17:23):
And Spider-Man's your favorite, right?
Jacob (17:25):
Yes.
Genine (17:25):
Yeah.
Stephanie (17:26):
I never heard that story.
Jacob (17:27):
It's a rare known story.
Stephanie (17:31):
Yeah.
So Peter Parker is Spider-Man?
Jacob (17:35):
Yes.
He always has been.
Stephanie (17:37):
That was awesome.
Thank you so much, Jake.
Jacob (17:39):
You're welcome.
Stephanie (17:40):
So Genine, let's talk a little bit about the
experience of you and yourfamily and Jake had when he aged
out of school.
Genine (17:48):
Oh boy.
Well, yeah, it's hard because,you know, we like to refer to it
as jumping off the cliff,because what happens is, uh, in
the state of Pennsylvania andmost other states, he is allowed
a, uh, you know, individualizededucation until he's 21.
So then he ages out of schooland, you know, depending on your
(18:14):
child's abilities, there's notmuch after that.
So you either have to find theresources or build the resources
to build a life for them afterthat.
Um, it's just, it's really,really difficult because the
(18:36):
community resources don't exist.
Stephanie (18:39):
Right.
So what I've seen and what we'veseen in our own community here
locally is there's, there'sadequate support through K
through 12 through that process.
Genine (18:53):
Generally speaking.
Stephanie (18:54):
Generally speaking, because it it's almost as if no
one really thought,"Hey, whathappens when an autistic person
becomes an adult?" And it's onlybeen recently that I think
that's starting to be talkedabout and brought to advocates
and organizations like ours,like, hey, what happens, time
doesn't stop does...
Genine (19:15):
Does not stop.
They all grow up.
Stephanie (19:16):
Right.
And it's a different world outthere for, for an, an autistic
adult.
Genine (19:22):
Yes.
Yeah.
You know, it depends onindependence level.
You know, it depends on, youknow, familial support.
It depends on community support,you know, are they able to
maintain a job?
You know, what barriers, whatother co-occurring issues do
they have?
Stephanie (19:39):
Well, it goes, look, I, I see it this way, when we're
gonna talk about firstresponders in a minute, it goes
from, oh, that's an, that's a,that's an autistic child who
needs protecting and, and, youknow, through, through that sta
those stages of childhood, notdisagreeing, but adulthood comes
and it, now it has dramaticallyshifted from, this is a child
(20:01):
with autism that needs to beprotected to what is this person
doing?
Is that a person a threat?
And yes, I wish that was not thecase.
We've seen it in, in manydifferent, terrible news reports
yes.
Across our country.
And I, I'm not try, I'm nottrying to oversimplify it, but
it can be as, as simple as that,when you're looking at it's a
(20:22):
shift, it's no longer, but it'sthe, it's the same exact person.
Genine (20:26):
Yes.
It's the same person.
And it also goes back toinclusion if they were included
in, in everything, in school, inthe community, from the time
that they were younger.
And instead of that diametricshift happening at some point
along the education where thenthey were not, you know, quite
as included in the classroomsand you know, where you did see
(20:50):
them grow up where they werealong with their peers in
certain things, you know, thenmaybe it wasn't like, oh, okay,
here's this adult now, what dowe do?
Stephanie (21:00):
Well, I think it's important for everyone to
understand why it's so, why weare so driven to talk to every
first responder that we can.
And fortunately our local policedepartment allowed us to come in
and talk with every officer on,on their force about disability
in general and, and autism, andhad great response.
(21:21):
And I think I'd like to ask youto share one of the stories that
you shared with them that reallyhit home with them that put it
in their minds as, okay, this ishow this is what you're talking
about.
Genine (21:30):
Yeah.
That's something that was so,and he absolutely loved that
when we got to spend time withthe Reading Police Department.
That was probably, he was soproud to be able to do that.
Right?
I mean, can you, you wanna talka little bit about that?
Jacob (21:45):
No.
Genine (21:45):
No.
Okay.
Um, yeah, he was so psyched tobe able to do that.
Um, and honestly, that'ssomething that has been really,
that has been so important tome.
And it's, you know, I wanna sayit was 2015 when it happened.
So, um, and this is the, this iskind of what clicked in my head.
(22:07):
So we were, um, in the airportin Philadelphia, getting ready
to get on a flight to NewOrleans.
And Jake is not a, a little guy,um, he's six foot and he's, um,
270 on a bad day.
So not a, not a child.
(22:27):
Um, and at that point he was, hewas not a little boy either, but
in my mind, this is, this is my,this is my little baby boy.
So I don't see him any other waythan that.
So, you know, we are inPhiladelphia, International
Airport, we're throwing our bagsup on the, on the, you know, the
baggage claim.
We're, we're doing what you doin the airport.
(22:50):
And all of a sudden, outta thecorner of my eye, I see one of
the guards on the TSA platform.
And he is zeroed in on my sonsquare.
And I thought, why are youlooking at my kid?
Like what what's going on?
And it clicked my son asadorable and wonderful, and 100%
(23:12):
non-threatening, looks sosketchy and suspicious to an
untrained eye right now.
And all that officer with amachine gun is doing is what
he's trained to do-- is pick outpeople who are suspicious.
Um, is it okay if I sharesomething?
(23:34):
Um, kind of private?
Jacob (23:35):
Yes.
Genine (23:36):
Yeah.
So Jake has, what's known asstims, so it's self stimulatory
behavior.
Um, a lot of times when he'swaiting, even if he's waiting in
line and, and it's quiet, hewill rock back and forth.
He will pace.
He will ring his hands.
It's a lot of repetitive bodymovements.
Um, if he's anxious, thosemovements get bigger, they're a
(23:59):
little more pronounced.
Um, sometimes he's scripting.
So he's kind of saying thingsunder his breath.
So imagine if you are in anairport and you are looking for
suspicious activity, and you'vegot a six foot person who's in
baggage claim, ringing his handsback and forth.
And so at that point, I realizedthat my child wasn't a sweet
(24:24):
little autistic boy.
He looked like a threat and itscared the daylight out of me.
And it was at that point, I hadthis visceral reaction.
And I remember saying to myhusband, I'm like,"Everybody's
gotta know, like, we've gottateach everybody that this isn't
suspicious behavior.
It's just because he has autism.
(24:44):
It's just because this is theway it is.
Like, I just remember feelingthis wave of panic.
Like I needed to get everysecurity guard, every police
officer, every, you know, everycop, every ambulance to like
everybody to understand thatthis isn't suspicious because
then you start hearing policereports of awful things
(25:06):
happening.
Stephanie (25:07):
And that's exactly why it's so important to get an
autistic person in front offirst responders.
Genine (25:15):
I have always said, and I will maintain this.
And I hope it helped theofficers last year.
You don't need a professionalseminar with somebody who's
going to tell you aboutneurodiversity and self
stimulatory behavior.
You don't need me up thereyapping, you need 15 minutes
alone hanging out with my son.
Stephanie (25:35):
Right.
Genine (25:35):
That's it.
Stephanie (25:36):
Well, I think that's what was so remarkable about the
training.
Genine (25:40):
Yeah.
Stephanie (25:40):
They, they didn't want, they could have hired
anybody to come in and, and, andlecture them on autism.
Or disability.
We could, I, I could have donethat.
And their police chief was veryopen and transparent about it
needs to come directly from thecommunity because that's
important to them.
And hearing that as, as a leaderof a center for independent
(26:01):
living, I was like, we're there.
You get what we're trying to do.
Genine (26:04):
Yeah.
And I, and I want, I want to be,be able to have to be in a room
where they can ask questionsthat they feel like they're
uncomfortable asking, look, youcan ask me anything.
I am not offended by anything,anywhere.
Anytime you can ask me, like weeven have, you know, a, a little
scenario when I get pulled over,because I'm not sure what he's
(26:29):
going to do or say to a policeofficer, if, and when I get
pulled over for speeding.
I'm not sure what his reaction'sgoing to be.
So I now, you know, have areally small blurb that I will
say to an officer, if I getpulled over,"Officer, here's my
license and registration, theyoung man sitting next to me is
my son.
He's autistic.
(26:50):
I'm not sure what he's going tosay or do.
Just so you know, there's a wildcard next to me."
Stephanie (26:55):
Right.
And from the feedback that wegot from the officers that we
talked with last summer, that'sexactly what they would want to
know.
Yeah.
Our local police force does notwant bad outcomes.
Nobody does.
And that's the information Ithink that was, was just not,
they'd never had it.
Genine (27:12):
Yeah.
I just wanna give you a heads upbecause chances are, he's gonna
be really mad at me because Ibroke the law and I'm gonna get
a ticket and his dad's gonna beso mad that I gotta, that I
gotta speeding ticket and I'mgonna get it.
Mom got pulled over that andhe's gonna dime me out.
The minute his dad walks in thedoor, mom got pulled over by a
cop today, dad, she wasspeeding.
Like, that's how it's gonna playout.
(27:33):
But like, I don't know if he'sgoing to say anything.
So I'm going to give saidofficer a heads up the moment
I'm done doing my business, justin case.
Stephanie (27:43):
I know that we're trying to continue that kind of
training and that kind ofoutreach to all of our local
first responders, because itreally was meaningful for both
sides.
Genine (27:54):
Yeah.
It's super important because youare going, it, it's not you
might, you are going to comeacross someone who is autistic.
Somebody who neuro diverse, youare going to come across
somebody who needs you to be alittle empathetic.
Stephanie (28:09):
Yeah.
And it was a positiveexperience.
I understand Jake got somepatches and, and a hat that's
that's really cool.
Genine (28:16):
And he got to meet the dog,
Stephanie (28:18):
The canine!
Jacob (28:19):
He was part of the canine unit.
Genine (28:20):
Yeah.
Stephanie (28:21):
Yeah.
That's great.
Genine (28:22):
We wanted to be part of the taser day, but they wouldn't
let us,
Jacob (28:26):
I didn't want to get tased.
Speaker 3 (28:28):
I don't wanna get tased either, Jake.
Genine (28:29):
I wanted to be the one who was doing the tasering, but
they didn't.
They said, no.
Stephanie (28:33):
Well, at least you asked.
Genine (28:35):
I asked, I did.
Stephanie (28:36):
So I wanna just touch on one more thing before we wrap
up.
I don't wanna, I mean, this,this topic in and of itself
could be an entire podcast.
It it's particularly relevant tothe autistic community.
And I wanna discuss it becauseif we're talking about autism
awareness and acceptance, whyare we still talking about
conservatorships andguardianships?
Genine (28:56):
Yeah I'm not sure.
Um, that is something we havechosen absolutely not to do.
We are not his voice.
He has his own voice.
We partner with him in his care.
Stephanie (29:08):
Can you share why?
I don't think people understandwhat that means when you
officially have aconservatorship or a
guardianship assigned, it's notfor the protection of the
individual.
Genine (29:20):
Not necessarily.
And I will also say that it isvery different from state to
state, but in the state ofPennsylvania, when you gain
guardianship over your child,they have no rights.
Um, they have no rights to theirmedical care.
They have no rights to theirfinancial care.
They have, they, you you'veessentially stripped them of all
(29:40):
of their rights.
We have chosen not to do that.
Jake is a thoughtful,intelligent person who is more
than capable of making his owndecisions.
Sometimes he needs help tofigure things out.
So we work as a team to do that.
There are alternatives to that.
We will continue to work as ateam forever.
Stephanie (30:01):
I wanted to just bring it up because I don't
think people understand thatthere are alternatives.
Genine (30:06):
Yes.
Stephanie (30:07):
And from my perspective, I'm not saying
there's not a place for it.
(30:11):
Yes.
Stephanie (30:11):
There absolutely is much like everything, but it
absolutely should not be thefirst course of action for
someone with an intellectualdisability that is having a
crisis or a person with mentalhealth concerns that is having a
crisis or going throughsomething, or even a person with
a disability who the medicalcommunity thinks cannot take
care of themselves.
So there are alternatives outthere.
(30:33):
There's home and community basedservices.
There's mental health support.
You could assign a power ofattorney as opposed to a
guardianship which, if you wantto go that route, then I believe
everybody needs to be fullyeducated on what exactly that
means.
And what it means for theindividual, because getting them
reversed as we have seen playout over the last year is very
(30:56):
difficult.
Genine (30:58):
It's next to impossible.
And it, yeah.
It's just something that we havechosen not to do.
Stephanie (31:05):
I appreciate your, your discussion on it because
people really believe, Genine,that it's the right thing to do.
It's, it's, it's really helpfuland supportive for the person.
And that's not really the case.
I don't think that everyone hasthe full picture.
Genine (31:18):
We have been able to, I mean, luckily, um, can, can I
share something personal?
Jacob (31:23):
Yes.
Genine (31:24):
Luckily Jake doesn't have a whole lot of physical
medical issues.
So there hasn't been anythingthat we've had to explain to
him, but I will say that he didhave one medical procedure.
He was a minor at that point,but you know, we were still able
to navigate through that andstill have him, again, he was a
minor.
So that wasn't necessarily anissue as to, you know, who was
(31:47):
making decisions.
He was a minor at that point,but still we were able to make
decisions as a team.
We had a, a thoughtful doctor.
We are his parents and he wasable to kind of, you know, still
have input.
I, he was 17 or 18 at the time.
So he was in a old, you know, hewas older at that point.
It's just not something I feelcomfortable doing.
Stephanie (32:09):
It's so important to understand what you're signing
up for.
Genine (32:13):
Yeah.
I'm just not,
Stephanie (32:14):
And I'm not, I'm not bashing it.
I'm just saying there'salternatives.
Genine (32:19):
Yes.
Stephanie (32:19):
And let's make that the first go-to choice rather
than
Genine (32:23):
It should be your final...
Stephanie (32:25):
It's a last resort.
Genine (32:26):
It should be your absolute last resort.
Stephanie (32:28):
And shouldn't, shouldn't we think of it that
way?
Genine (32:30):
Yes.
Stephanie (32:30):
I mean, it's very hard to, to reverse.
Genine (32:32):
Yes.
Stephanie (32:33):
And unfortunately once, once someone's in one, the
odds are stacked against you.
Yes.
The individuals often do noteven appear at the court
hearings.
They don't have to, it's it'sreally rife with, with problems.
Genine (32:45):
They're almost considered a non, a non voice at
that point.
They, they have no voice.
Stephanie (32:50):
Thank you for sharing your experience and thoughts on
that.
I think it's important just forpeople to understand, make your
own decisions.
Of course.
But know what, what you'redoing.
Understand the ramifications of,of what it is that you're
choosing to do.
Before we wrap up, Jake, did youwanna have any last, any last
thoughts?
Any last words on beingautistic?
Genine (33:11):
What's it feel like to be autistic?
Jacob (33:14):
Well, it still feels empowering to some people.
Stephanie (33:17):
Yeah.
Great.
I understand.
You're the CEO of a business.
Jacob (33:22):
Yes.
Uh, it's a Cookie Break withJake.
I, I go to some places todeliver cookies and tell
everyone about autism and how tohandle it.
Stephanie (33:31):
That is amazing.
Jacob (33:33):
Thank you.
Stephanie (33:34):
What kind of cookies do you make?
Jacob (33:35):
Well, we made like a peanut butter blast.
It kind of like, like it hasReese's in it.
Stephanie (33:43):
Is that your favorite candy?
Jacob (33:44):
Yes.
Stephanie (33:45):
Jacob (33:47):
Yeah.
And we usually make a basicchocolate chip just in case if
anyone has a nut allergy.
Stephanie (33:53):
Very thoughtful.
And how long have you been doingthis?
Jacob (33:57):
Well, a very long time, I just can't think very far back
though.
Stephanie (34:03):
Okay.
Well, it sounds like fun.
Jacob (34:05):
Thank you.
Stephanie (34:06):
It sounds like you get to go to a lot of
interesting places.
Jacob (34:09):
Yeah.
I went to a lavender farm in anaviary.
I even went to a friend's farmand take a look at some goats.
Stephanie (34:18):
Oh my gosh.
A goat farm, a lavender farm, anaviary.
That sounds like...
wonderful.
Jacob (34:25):
Yes.
Stephanie (34:26):
Well thank you for sharing Jake.
Jacob (34:28):
Thank you
Stephanie (34:28):
Genine, any last thoughts before we, before we
wrap up?
Genine (34:32):
No, I don't think so.
I just think, I think for somany years, um, you associated
autism with, you know, you wouldhear the words"tragic" or, you
know, it would be the plight of,I think the, this, the shift
needs to be that it isempowering.
It needs to be the focus on thestrength.
(34:54):
Um, the, the dynamicness, forlack of a better words of, you
know, autistic individuals andthe fact that it's not broken,
you know, we've, we've alwaystold him it's the focus on the
positive and that's where itneeds to be.
Yes, there's a list of thingsmaybe that he can't do.
But I have a really long list ofthings that I can't do too.
(35:17):
So the focus really needs to beon the list of amazing things
that he can do and that he'sspectacular at.
And I think that's the, theneuro diverse brain is
unbelievable.
And I think that's where theshift needs to be.
It needs to be, you know, thisappreciation, this positive spin
(35:39):
it's, it's not broken, you know,just, there are lots of
different kinds of bears andthere's lots of different kinds
of brains.
And, you know, I might have aMacBook and he might have a
Windows and it's not bad, it'sjust different.
Stephanie (35:53):
And on that note, I think we're gonna wrap up.
Thank you both for joining us onDisability Talks and we'll see
you next time.
Genine (36:00):
Thank you!
Jacob (36:01):
We'll see you next time.
Stephanie (36:02):
All right.
Take care, everybody.
Outro (36:42):
Thanks for tuning in to this episode of Disability
Talks.
Want to be a part of the ongoingconversation?
Visit our website atabilitiesinmotion.org or connect
with us on social media.
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