Episode 234 | Glen Niles - Corie Sheppard Podcast

Episode Transcript
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Corie (00:17):
All right, folks.
I have with me today Mr GlennNiles, president of the Dong
Syndrome family network.
How are you going, sir?

Glen (00:23):
I'm good, I'm good, I'm glad to be here, man.
I don't know if I could fillthe shoes of the peopleung
syndrome family network.
How are you going, sir?
I'm good, I'm good, I'm I'mglad to be here, man.

Corie (00:26):
I don't know if I could fill the shoes of the people who
came here before you're here tofill them shoes, yeah, yeah,
yeah, yeah, I don't tell peoplethat I know glenn for a long,
long time, just knowing you inand out and around the gym, but
I don't tell you that, uh,evidence that I've been in the
gym for a long time.
But the images people see itnow you versus me, that I don't
know what I was doing in the gymversus what you was doing in

(00:47):
the gym.
But you've been around.
We heard it, trainer, right,you've been around for a long
time, yeah boy too long.
I don't want to let everybodyknow my age we go do some
guessing over the course of thisepisode.
You go, you play together, butthat's something I've been
seeing you doing for a longcircular gym for some time now
and it's one of the people whoyou'll see a little bit of

(01:08):
mysteriousness about you know.
See, you're wrongly, jimmy,don't talk much.
You're dealing with yourclients, very, very focused on
them.
So I was surprised.
The other day I came and youtell me it's like how do you
decide who come in next?
On the podcast there's aquestion of starting to get more
and more and my answer to youwas well, national impact.
And then you told me what youdo and so on.
And I remember seeing you inpapers one day.

(01:29):
I remember seeing it.
That was the first time I said,okay, there's ways, and there's
ways to do.
So.
I'd ask you, like you, gettinginto the network or starting the
network, what was the impetusfor it?
How did you get?

Glen (01:41):
into that.
Well, starting our networkreally was because of my son.
You know my son was born withDown syndrome.
I didn't know anything aboutDown syndrome.
You know we were a young coupleand I remember distinctly when
my wife was pregnant and we wentby the doctor.
You know we read in this bookwhat to expect when you're

(02:02):
expecting.

Corie (02:02):
Of course, all of us would be right, you know so we
talk about um doing anamniocentesis.

Glen (02:08):
Well, this now my son is 26 years, so this is way back in
time.
People, now they're not evendoing that because they have a
blood test for the firsttrimester and you'll know what's
like what's going on you know.
So we asked the doctor where isthis amniocentesis?
What's that about?
He that's to check the amnioticfluid and see if the child has
Down syndrome.
But all you do have to worryabout that, all you young.

Corie (02:30):
This is what the doctor said.

Glen (02:30):
Yeah, that's what he said.
So he's like oh okay, right,you don't have to worry about
that.
So you're doing everything youknow right exercises, taking the
necessary vitamins, everythingperfect diet.
And then when my son was born,I was in the room, you know so,
between the pain and my wifecrushing my hand, I'm watching

(02:53):
her say but this baby lookingdifferent.
So there's something wrong, youknow when he was born, I said
there's something wrong.
Right, I didn't tell heranything, you know, but that
just we on my mind.
You know, back then I didn'thave no cell phone, so when I
went home I couldn't even sleepproperly.
Next morning, you know, shecalled and she said that the

(03:13):
doctor wanted to talk to us.
So I don't know if the doctorwas going to tell us something
about the baby, because thatbaby just wasn't looking right
and this was in general.
No, this was in San fernando,okay, southern medical at the
time.
So I went down and he said thatthe baby has down syndrome.
So I, I trip, I wasn't talking,the whole room just went red

(03:39):
and I just watching this man,like I just run up his chest and
run, continue running all overhim, literally, you know,
because I remember we asked himif we had to do the test.
Yes, of course, and he said no,you know.
So he really apologized and allkinds of things.
I wasn't talking.
He asked him a question and Iwas just looking at him and my
wife was just trying to calm medown.
You know I didn't talk againfor the rest of that interview

(04:05):
with him.
You know, and I said, well, Iwas saying I hope my son's
healthy Ten fingers, ten toes,you know the normal things that
they'll say.
I said I didn't factor in Downsyndrome or any other form of
disability, Right?
So I said, well, that's how itis.
And then I started thinkingabout, okay, well, what is this

(04:28):
down syndrome thing and whatscores it right?
because I mean I've seen peoplewith down syndrome before and
the people I've seen wasn'treally doing anything I see,
they're overweight, they'resticking out their tongue,
they're making noises, they,they currently talk, you know,
speak properly or anything.
So you know all of that on mymind.

(04:48):
I see, without this one, my son, this is what gonna happen to
my son so now that you'reexperiencing it is when you're
really learning about what it isyes, now I'm trying to find out
what it is.
You know, google became a friend, you know, and and then I
started align myself with otherorganizations.
But back then the next shockerwas in two days, when he had to

(05:10):
do just a checkup by apediatrician, right, and the
pediatrician listened to hisheart.
Pause.
He went back to his heart again.
He check everything else.
He going back to his heartagain, so I checked everything
else.
He's going back to his heartagain.
So I'm watching him out.
You know what it is.
Well, one moment.
And he's checking, and he'schecking, and he's checking.

(05:33):
And you know, my blood pressurestarted to raise again one time
because I was like, oh, come on, man, he's done.
Born-to-die syndrome.

Corie (05:39):
What next next?

Glen (05:40):
you know.
So I just jump up the the theback of my leg, said the chair,
the chair fly across the roomand I hold on to his desk, you
know, and I kind of push thedesk towards him because I tell
her, so vexed, I said, just tellus, just tell us, waiters, just
tell us right.
And then he say he, he had anecho.
So it sounded like if you havea couple holes in his heart,

(06:04):
you're like I want a Downsyndrome.
When I started to tell myself,okay, well, he'll be a special
Olympian, but now we have holesin his heart so he's not going
to live.
So he passed on to a pediatriccardiologist, dr Diane Alexander
, and we went to see her.
She did all the tests toconfirm what he was saying.

(06:27):
And that's when I went into areal dark place.
Right, yeah, like, seriously, Iwas like, but what does I do?

Corie (06:36):
And this is.
He's still a newborn at thispoint, right.

Glen (06:38):
Yeah, he's still a newborn .
You know what does I do?

Corie (06:41):
Yeah.

Glen (06:42):
You know, to deserve this.
All the time we're waiting, youknow, to get our first child
after marriage and now he's bornand he has Down syndrome.
Plus he has, you know,congenital heart disease.
Start to think about it.
I start watching my father ashard as you do.
Back then I start studyingeverything that I do.
You know they all say since thefather, what can I do with?

Corie (07:05):
my family, because I don't know what causing it?
Of course.
I guess at that point in timeyou do have a lot of information
about it.
We're not in a society where wetalk about things openly, as
that you know it's a secret, andespecially back then.

Glen (07:18):
You know, back then it was still in the real mode of
people hiding children withdisabilities.
Right, you know, they're notreally bringing them out because
they are shamed, they don'tknow how society will look at
them, and all of that.
So that that was fully.
I mean it's still like that now, but back then it was fully,
fully entrenched, of course youknow.
So the next step was he had tohave opened that surgery or he

(07:41):
would have died Obviously tohave opened that surgery or he
would have died.
Obviously we don't have themoney for that.
And you know, in talking to dralexander they said our team of
doctors has come down.
You know, back then, as I saidthis, like 26 years ago, but the
waiting list is very long.
So you know, the the picturestart looking dimmer and dimmer
to me.
You know we don't have themoney, the waiting list long.

(08:02):
Well, like my son will die.
So I was talking to a friendabout it and she attended Howard
University she's dead now, youknow, god rest her soul and
Michelle Kato, and she told methat she'll contact some of her
peers because she's aphysiotherapist.

(08:23):
So you know other people in hercohort who have been doctors,
nurses.
She'll contact some of herpeers because she's a
physiotherapist, so you knowother people in her court who
have been doctors, nurses, thing.
She'll contact some of them andfind out.
And when she contacted themthey told her about rotary
international had a gift of lifeprogram and they take on cases
like this.
You know I was like okay, I gotthe information for them and we

(08:45):
contacted them and theyresponded they asked for all his
test results.
So you know we went to dralexander and prepared all the
results back then put it on avhs tape yeah, that's the hero
yeah, put it on a vhs tape.
No, no, no dvd or blu-ray or noflash drive, you know, I mean,

(09:06):
and we sent it by registeredmail up to them and they they
took the case right.
So they had to wait until hewas five months old so he'd be
strong enough to go under thegeneral anesthesia.
So from the time he was born hewas very, he was actually very
robust, oh, but in that fivemonths man almost shrank away to

(09:30):
nothing.

Corie (09:30):
I could imagine that must have been a rough five months
for you all to hear yeah, boy,because you're just praying for
the day to come.

Glen (09:35):
Exactly, I'm just watching him getting smaller and smaller
.
You know, operation was asuccess.
I had to say thank you to thoseRotarians man, they don't know
me, we're on this small islanddown in the Caribbean and one of
them kept my wife and son intheir home for months prior to

(09:56):
the surgery and after, andanother one paid for everything
you know.
So he made sure after we wentback up on vacation and went and
visited them to show them.
Hey, this is my analysis.

Corie (10:10):
They must be too happy to see what he's become.

Glen (10:13):
You understand Mm-hmm.

Corie (10:14):
Yeah, so after that now, yeah that was his start, mm-hmm.
But then, in still trying tolearn about this thing, one
thing I know is that it wasn'tmy fault, because you know I was
thinking it's my fault.
Yeah, I want to talk about thatsome more, because the thing is
like when you find out you'regonna and this is your first
child yeah, when you find outyou're gonna be a father, as as

(10:36):
men, you have these dreams ofbeing the next ronaldo, the next
messi.
I've always known you to be avery fit man, so I would imagine
that you're thinking the samethings.
You want him to be bright, youwant him to be sporty and all
that.
You have all that going in allthe way through the pregnancy
with you.

Glen (10:50):
Yes, all of all of that all.
But listen, my, my fatherdidn't really put me in the
sport, put me in into any sportat all, any kind of fitness.
So I was a wimp growing up.
I was bullied in school.
Yeah, I couldn't fight, Icouldn't do anything, literally,
you know.
So I was a wimp growing up.
I was bullied in school.
Yeah, I couldn't fight, Icouldn't do anything, literally,
you know.
So I was like a little outcastin school.
When I see my schoolmates now,you know, like from primary

(11:14):
school or secondary school, like50 years after, they can't
believe I look how I look now.
Remember this skinny littleblack fella and looking at me
now I'm taller than them, arebigger than a lot of them and
are fitter than a lot of them,you know.
But back then, yeah, I wasn'tinto any sport.
So you know, I was tellingmyself my son everything will be

(11:35):
different for him.
I am going to let him tryeverything, see which one he
likes, right, things like that.
So I had real plans.
Of course, of course theuniverse or god had their own
plans.

Corie (11:46):
Yeah, and finding out that news, because I was reading
that there is they have thepre-nasal test to find out your
doctor talk you out of that.
He basically basing it on thefact that you fit, which have
nothing to do with nothing whichhas absolutely nothing.

Glen (11:58):
He said that we were young .
The average age of a womangiven birth to a child with Down
syndrome is 21.
And that's because more womenat that age give birth to
children.
You know, they say the riskincreases when the person is
older, but that is not a factoreither, because I personally

(12:20):
know three friends who hadchildren at 45 and they were
born with no issues whatsoeverno down syndrome, no autism, no
cerebral palsy, nothing.
You know their children areadults, now unhealthy, you know.
So it just happens.
Yeah, yeah, right.
Um, harvard medical school.

(12:41):
You know I remember years agothey were spending millions
trying to figure out what causesthis 21st chromosome to split,
why.
You know, and I used to bethinking well, along with a lot
of other people, that why areyou spending millions trying to
figure out how to stop Downsyndrome instead of using our
same millions to help take careof the people born with Down

(13:04):
syndrome?

Corie (13:05):
Yeah, because your reality is now that we're here.
Yeah.

Glen (13:08):
We're here already, so what are you going to do?
You can't call them like whatthey used to do in some European
countries.

Corie (13:16):
Of course, of course.

Glen (13:16):
Back in the day when I hear some kind of horror stories
where they actually used tothey would not like if they have
like my son, they have a heartdisease.
They would not give them thesurgery Because, as far as
they're concerned, they're notgoing to be give any meaningful
contribution to society.
So they basically used to letthem live for however long they

(13:39):
live.

Corie (13:40):
Yeah, abandoned, basically yeah, yeah, almost
abandoned.

Glen (13:43):
Yeah, if they live, well, fine.
If they don't, well, therewouldn't have been any eustache
on him.
Anyways, that's their thinking,you know.
But now that has changed.
So if you Google some sites,you'll still see them saying the
average age of a person withDown syndrome is 25.
And that's real archaic.

(14:04):
And if you Google the sites,that of the organizations that
are advocating for human rightsor personal disabilities and
things, you'll see the averageage is 60.
So they would live on theirparents.
No, so a whole different change,and I feel that change is due
to the fact that they're gettingmedical attention, because a

(14:31):
lot of countries havelegislation that will protect
them, of course, and instead ofjust leaving them as before.
So in me starting to learn allof this, I came upon the
national down syndrome congress,uh, based in the?
U Atlanta.
The National Down SyndromeSociety that's based in New York
, down Syndrome International inthe UK, canada Down Syndrome

(14:51):
Society.
So I started to follow thosesites because they had a lot
more information on it.
I mean, if you, if a parent inTrinidad child is born with Down
Syndrome and they write to theNational Down Syndrome Society
in New York, they send them apackage, all the information you
need to know about your newborn.

(15:12):
Imagine that they send them apackage here to Trinidad for
free.

Corie (15:15):
Yeah, okay.

Glen (15:16):
Yeah, I thought you meant within the US.

Corie (15:18):
So if you write, to them.

Glen (15:19):
I see, yeah, you write to them, they send them a package.
You know so, the National DownSyndrome Congress, they have an
annual conference.
So I say I want to attend thisconference.
So I attended the conferenceand that's what changed my
entire life, literally.

(15:40):
That was the catalyst, you know.
I remember it was in Boston.
I think it was either 2008,2007.
And when I walk into the hotelit's a huge hotel.
I didn't know that conferencewas so big.
You know, coming from Trinidad,you think yeah, yeah in
conference it must be a littlething.
About 300 people, like about3,000 people, yeah, and people

(16:01):
from all over the US and eveninternational internationals,
right, but what hit me is when Istand up in the lobby, I never
see so many people with DownSyndrome in my life.
That's one.
Two I'm watching parentswalking with their kids or young
adults, and these young adults,they're not holding their hands

(16:25):
for anything.
They're walking on their own,are watching their dress, their
manner, the differentpersonalities I'm like, but
they're looking like any otheraverage young teenager or young
adult, and that's exactly theexperience in yeah I, I was
looking to see.
I saw that overweight peoplewalking.

(16:46):
They can't walk properly.
Parents had to hold their hands, you know well into the until
they get old until they die, andthat wasn't what I was seeing.
I watched men with long hairairing in theirs.
Well, back then was the baggypants.
Of course, the pants look likeit made made from cloth.
That could probably make aboutthree pairs of pants, you know,

(17:08):
hanging off.

Corie (17:09):
Same way yeah.

Glen (17:11):
The shirts are all big and they have on a baseball cap
turned backwards or forward, butthen you'll see the others who
dressed in polo shirt and jeanstucked into their pants with
their belt.
You'll see a scene where theymix into their pants with their
belt, you know, so you're seeingall the mix Some of the girls
have on business suits, some ofthem in miniskirt, with boots
and these are girls with donkeys.

Corie (17:29):
It's just society.
You see no reflection?

Glen (17:31):
Yeah, so I just I was in shock, right, you know, coming
from Trinidad and looking atthis.
But and the parents hand themthe keys, the room keys, and say
don't forget, we're meeting atso-and-so time for dinner.

Corie (17:45):
So you're like independent, I'm like well
they're going, where they going.

Glen (17:51):
I follow a group of them outside to see where they're
going because I tell you, it'sjust not the experience we have
here.
It is not, it is not, so for methat was mind blowing, blowing.

Corie (18:00):
How old your son is at this time, then what was he born
?

Glen (18:03):
in 1998.
You got that much.

Corie (18:09):
I don't know.
Yeah, so that was like 2007.

Glen (18:13):
Yes, he could be about nine.
Yeah, so I took him with me andyou know, I'm just watching him
and watching these people.
So you, these people, so youknow, my whole vision of the
future, of his future, changed,of course, in that instant,
because I'm like this all ofthem are Down syndrome.
He has Down syndrome.

(18:34):
There's not no different kindof Down syndrome.
Yeah, yeah, yeah, so he couldbe just like them, of course.
And that's why I start thinking, you know, and then, in going
to the sessions and speaking tothe lecturers, the presenters
and the after, and hearing allthe things that we could do as

(18:55):
parents, I think the mostimportant thing is early
intervention.

Corie (18:59):
Yeah, do it Right.

Glen (19:00):
You know, they say the first five years is the
formative years.
That's why we could rememberevery nursery rhyme.
If you ask me about pythagoras,do you and I in some trouble
that, yeah, you should haveteached me that at four or five
years old you understand, but asa parent the thing is like.

Corie (19:14):
I ask you, what gives you that drive and impetus?
Because, at the risk ofsomething completely ignorant, I
can't imagine getting that newsin the room.
I appreciate you talking aboutyour reaction to it, but I
imagine that I would be feelingwell blame, regret.
I would have studied all thethings I do woman in my life and
I say, boy, this is mypunishment for this thing.
Now I would be studying theshame that you know.

(19:36):
How do I tell family and tellpeople?
Because trinidad is a funnyplace when it comes to people
and everybody expecting goodnews and people calling you, and
now you had to tell that storyover and over and over with
family, that calling and themkind of things.
So you would have gone throughall those things like that, that
cycle of emotion.

Glen (19:53):
Yeah, I did, I did, and you know what carried me through
Anger.

Corie (19:57):
Yeah.

Glen (19:58):
Bad mind, bad man, just anger, just pure anger.
Is angry with everybody, asangry and and jealous of the
people who had the so-calledperfect child, you know, with no
disabilities, and when they'renot giving that child all that
they could, I was even moreangry with them.
So some of my friends, you knowthey wouldn't even know why I

(20:20):
kind of ostracize them, but itit's because of that, you know
I'm like look at your child, man, you don't know easy habits.
Exactly and you're not puttingin the effort, you're not being
the father that you should be tothat child or the mother that
you should be to that child, andthey would never understand if
I tried to explain it to them,because there's another child,

(20:41):
like Tyrese, you know, andbecause I didn't have a child
like Tyrese, you know.
So it's that anger that pushedme, that anger that made me
invest and go on that conferenceand meet people and meet
parents and get their storiesand then come back and say, nah,
because I'm always kind ofsolutions-oriented.
You tell me a problem, I startto wrap my mind around it and

(21:04):
how we could fix this.
I don't focus on the problem atmind around it and how we could
fix this right.
I don't focus on the problem atall.
I focus how we could fix this,the solution and I use that even
as a coach.
Now, you know, people come upwith all kind of excuses why
they're not fit, why they're notgoing to the gym, and for a
time they call.
I'll keep shooting down all theexcuses until they realize,
yeah, I could do better.
So it's the same thing.
But the thing is I can fix myson.

(21:25):
So I was thinking, okay, if Ican't fix him, what we could do
to make his life like thoseyoung adults' lives that we see
in the US, but even the decisionto go to the conference at all,
or even do the reading.

Corie (21:45):
I put myself in this position again and I might just
reside myself to.
This is what it is.
I had to take care of him forthe rest of my life.
I might still need to leave too, just run for the hills, you
know.
But you take a differentapproach to it.
You do a deep dive.

Glen (21:59):
Total total different.
I told my wife to leave.
You know she wanted to kill me,right.
But your woman go through ninemonths and have a child.
I say, listen, just leave thatchild with me.
You could go.
Go and marry somebody else andhave a perfect baby, you know,
and that didn't go down verywell.

(22:20):
I would imagine yeah, you know,but I I didn't think about you
on our way because I was stillthinking, you know, as I caused
this, I had to fix it, kind ofthing.
That was.
That was just my mentality Icaused this, I had to fix it.
And so when I came back fromthat conference, I tried to

(22:40):
engage with other people, otherparents, parents, and I'm
telling them, I always tellpeople, coming back, I was like
Robinson, damn ChristopherColumbus, you know and telling
everybody the world is not flat,yeah, it's a new world, yeah,
if you keep sailing.
That's how I felt, tellingpeople listen, our children

(23:04):
could go to school, they couldbe educated, they could be
educated, they could get jobs,they could live independently.
And everybody watching me, likeGlenn, finally loses, finally
trip off.
Our children are down and getthe best of it.

Corie (23:15):
Yeah, so at that time, locally you have a lot of
networks, like you're in touchwith a lot of parents who would
be dealing with the same thingand that kind of thing.
Do you have any place where youcould go, similar to the
conference?

Glen (23:24):
No, I didn't have, and that's why, in trying to get in
touch with people and neverforget this, dr Natalie Dick, a
developmental specialist atMount Hope.
She sent out an invite and I'mnot sure if she was doing

(23:47):
research, if she was working onsome people or something back
then and requesting parents ofchildren with disabilities to
come to her office, and she wasinterviewing us and every time I
went I would take the names ofeverybody who was there.

Corie (24:03):
So when I went the second time I would take the names of
everybody who was there.

Glen (24:05):
So when I went the second time I met different people, and
the third time I met differentpeople.
I just started contacting themand staying in touch with them.
And that's work, yeah, andthat's how I finally met, like
about five other parents, and Isaid, hey, we could do what
they're doing in the States,because all those, a lot of the

(24:27):
organizations in the US, areformed by parents.
So I said, hey, we could dothat.
You know, let's come togetherand form.
So we banded about, just as Isaid what we'll call it.
Say well, it's about Downsyndrome, so we'll say it.
Say well, it's about downsyndrome, so we'll say down

(24:47):
syndrome, and we, we throw, youknow, throw around different
names until we came up with thefamily and he says all about the
families coming together andworking together for their kids,
you know.
So, down syndrome, familynetwork storm, and that was in
2011.
So we went, we registered it inaugust 2011 and then everything

(25:09):
like it hit, hit the bricksright, because every time we're
planning, okay, let's launch it.
I had a different vision inmind, you know, for the launch.
I was like, if we launch inthis, at that time I was brand
new, just came to trinidad.
I said we launch on this had tobe at the height of the hilton

(25:30):
and they watch the division.

Corie (25:31):
You see what they watch me like about a madman.

Glen (25:34):
I say yeah.
I say we, we had a launch, wehad to make an impact from the
get-go.
I say we can't launch a newschool and no back room.
We can't do that.
So of course, the launch didn'thappen.
And then in September, theUnited Nations proclaimed the

(25:55):
21st of March as World DownSyndrome Day, because the 21st
that splits three ways.
So they used the 21st of Marchand the first time it was being
celebrated would have use the21st of march and the first time
it will have been celebratedwill have been the 21st of march
2012 all right, so you're donemobilizing, so we say, right,
we'll launch it on that day.

(26:16):
So it will come out to theanniversary of world down
syndrome day, right every year.
And we got it to come off.
Oh, that's good.
And that was the birth and welaunched at the Hyatt.

Corie (26:27):
Oh good, congrats, Congrats again.
We launched at the Hyatt.

Glen (26:31):
The president was there, dr Richard, so that was cool.
Oh, beautiful, beautiful.

Corie (26:37):
Like, with some of these things you're saying, it sounds
surreal because again you'rewondering if you get that news
from a doctor and that's it.
You're talking about aninternational organization who's
sending a package.
There's no local support likethat you.
You find out that from yourdoctor and then you're on your
own, you deal with your anger.

Glen (26:53):
There's no support they had um at the time.
They are the nationalassociation for down syndrome,
based in sundance.
So, of course, when I heardabout it, I I got excited, you
know, because I'm thinking it'ssomething like what, like the
organizations I'm in touch withinternationally?

Corie (27:09):
Oh, by that time you're already in touch with them.
Yeah, Okay.

Glen (27:12):
I understand, because I couldn't find anything locally,
you know, until somebody told meabout it.
So I went to visit them, but itwasn't what I thought it would
be.
It was just like a school.
You know, I'm sitting and I'mlooking at the kids here and I'm
saying, no, nah, this is notgoing to create the future that

(27:36):
I've seen when I went to thatconference, because we only have
persons with disabilities inone area and they have nothing
to to learn from, nobody toemulate, because all of them
have disabilities, so all theywill do is learn different
traits from each other.

Corie (27:54):
You know, so you think it feeds into the kind of outcast
mentality we have towards thosethings in our society yeah, well
, it definitely does, becausethat ties all these society
things right.

Glen (28:03):
When you're different, it does it.
You're's how the society thinks.
Right, when you're different,that's it.
You're literally on the outside.
You don't fit in, you know.
So that's exactly what they do,along with, of course, the
compassion and the sympathy thatpeople feel for you when you
know you have a child with adisability, and they feel sorry

(28:24):
for you yeah literally sorry foryou.
Yeah, literally sorry for you.
They pity you and, of course,as I said, I was just so.
Even my friends, they probablymeant well, but coming and
telling me that they're so sorrythat my son was born with Down
syndrome, I said he does nothave cancer.

(28:46):
Yeah, it's not like a loss,yeah, it's not a disease.
You know, someone would saygosh boy, sorry, your son's
suffering with Down syndrome.
He's not suffering.
You know it's a condition, agenetic condition.
You know it's not a disease.
And I keep telling people thatover and over, but they were,
just like me, ignorant.
They don't know.

(29:07):
Some people right now don'tknow the difference between down
syndrome and autism.

Corie (29:12):
Yeah, I'm one like I read a lot about it and my wife is a
school teacher, so through her,some of her training is where I
start understanding,understanding some of these
things or some of thedifferences.
But there's no, well,definitely not teaching it in
the school system.
There's no sensitization to it,not at my time, I guess.
No, youths, no different.
They are the answers to allthese, any issue.

(29:32):
I feel youth have a betterchance than us, but yeah,
there's no competition.

Glen (29:35):
The answers, that's the some of them don't know how to
use it properly so it's almostlike that.

Corie (29:42):
That outcasting perpetuates it.
It'll go on and on.
But that drive you found tobuild it you were doing advocacy
or anything like that before.
Everything is brand new to youhere.

Glen (29:53):
No, everything was brand new to me, even when I formed
the network and we sat down whowill be chairman?
And everybody's looking aroundthe kind of person as I.
I say I'm a fixer, but asalways, a behind the scenes
fixer, right never, never upfront.

(30:13):
Yeah, I'm never up front inanything, you know.
That's from since, as I said,you know going to school and,
and you know never being at theforefront of everything.
So I, I will be work behind thescenes, I'll make you look real
good, nobody needs to know itwas me, but I want to see an
effect, you know.
So I'm, I'm pinpointingeverybody as this one or two

(30:35):
degrees, this one, I think itcould know it should be you, it
should be you.
Now, all of them are women, youknow, and I was the only man on
the board.
So everybody said no, theydon't want to be.
So I, I had to be the one to bechairman.
So no, there's me angry again.
You know why.
Why I was pushed into theforefront, you know to, to have

(30:59):
to do this.
But then again, I guess it'sbecause, you know, as I say, we
really think we're in control ofour path, you know, and we
could do whatever we want tobelieve we're in control, but
somehow like we're really not incontrol, you know.

(31:20):
You know because when I thinkback on how everything happened
and what took me to the point ofstarting a network, and where
the network is now is almostlike it was destiny, you know,
because, when I think back, if Ididn't start a network, what
would be happening now withregard to lobbying for the human

(31:44):
rights of persons withdisabilities and the calls for
legislation and things like that, what would have been happening
?
Because it wasn't happening?

Corie (31:53):
Yeah, and you're not sure if anybody else would have
stepped up Exactly.

Glen (31:57):
It's almost like it was destiny, but it was a difficult
journey.
Talking about it now, and Ialways feel that we're still not
doing enough.
Yeah, you know, even witheverything that's being done now

(32:20):
, even with we have peopleemployed, we have people in
schools and things like that,you know, it's almost like if,
yeah, but we're still justbarely scratching the surface,
of course, of course, becausethe average person still thinks
that persons with Down syndromeor disabilities- have no value,
yeah, and should be cast aside.

Corie (32:41):
If I was to say that the general idea here for people who
are not experiencing it, orpeople who might not have a
child or family member and don'tknow what it is, avoidance, is
a strategy, I feel.

Glen (32:50):
Yeah, yeah, and they think it's a good thing, you know, to
put them in a box.
You know, regardless of howpretty the box is, Because
according to the area where thebox is built, you know some of
them are very nice.
Yeah, but the whole thing isit's still a box.
I understand they are stillsegregated from society.

Corie (33:10):
I like what you say too, in terms of the diversity in our
school helps.
In other words, if I havepeople from different religious
backgrounds, different races,different education levels, you
don't know where my inspirationcould come from or who I could
take example from or who couldbe my friend, and the fact that
we try to diversify them outmeans that they have a.

(33:31):
It's limited if you're onlyalong like people, so it's a
real disadvantage to society,and I do like what you say as
well.
We may not see it when I say we, I mean myself too.
We may not see it as okay.
This is a group that couldcontribute, an individual that
could contribute.
We don't see it that way.

Glen (33:49):
Yeah, yeah, we don't, we don't.
We see them as in someinstances, we see them as almost
as a threat, I guess, like howI was thinking.
You know, we can't fix them?

Corie (34:02):
what do you do with them?
Yeah, of course you know wedon't want people to see them.

Glen (34:05):
We, a lot of families, break up.
You know the the father blamingthe mother, the mother blaming
the father.
This come from your side of thefamily, you know.
So it's either the motherleaves or the fathers leave.
Most of the time the fathersleave, so you have a lot of
single mothers.
You know, with children withdisabilities, we have instances
where families cut the motheroff because she refused to drop

(34:29):
the child off, by lady who choyor one of your places, or just
leave it in the hospital andcome home.
Yeah, they cut them off.
That's crazy.
So tell you when you hear someof these stories, it's crazy.
And then when I go, becauseI've been to several of the
conferences, when I go to theseconferences and I'm hanging out

(34:49):
like literally going to a barand liming with young adults
with Down syndrome, I mean, whendo you think?

Corie (34:56):
that's happening to happen.
He doesn't want to come backhome, but he doesn't want to
just stay there.

Glen (35:00):
You know, and everybody used to say, well, why do you
carry Tyrese abroad?
And I used to say, well, why,when we could fix here, of
course, but Tyrese Russell, highGlen, you know, especially the

(35:26):
girls yeah, yeah, yeah.
Yeah, the girls go crazy, youknow, over him.

Corie (35:31):
Yeah, he fit like a fiddle if people was to see him.

Glen (35:33):
yeah, yeah the girls go crazy over him.
Unfortunately, he gets spoiled.
Yeah, because when he became ateenager and we went to a
conference, where was thatconference?
Indianapolis, right?
Yeah, we went to a conferencein Indianapolis and what they do
, as I say, it's a very largeconference.

(35:54):
On the Friday night they have adance party Right, and on the
Saturday night they have a danceparty right, and on the
saturday night they have a galabanquet.
Oh nice with a dance after right.
So from the friday night thiswas his first experience as an
adult and for conference of thatnature.
They have a lot of volunteers.
So they have all theseuniversity students and college

(36:17):
students volunteering for theconference.
So you know, you have all thesegirls who do not have down
syndrome.
And the difference is when theyvolunteer at the dance party.
It is a big dance party whereeverybody, everybody, including
the parents exactly includingparents.

(36:40):
So the parents would be off onone side and all the young
people are on the dance floor.
Some parents would be in groupson the dance floor too, but not
with their children and so hehad a ball dancing with these
university students and, ofcourse, afterwards I remember we
were going to a restaurant fordinner and when he was passing

(37:03):
there was a guy walking withabout five girls you know they
were going to lime and they said, yes, tyrese.
And all the girls startedcalling out him tyrese, tyrese,
tyrese.

Corie (37:15):
Listen.

Glen (37:16):
He's 26 now and he will say they want me dad, tyrese,
tyrese.
He never forgot that experience.

Corie (37:25):
Of course you know so.

Glen (37:27):
Afterwards, when we go back, you know he's only looking
to dance With those universityCollege students, right, even
though the girls with Downsyndrome Want to come and dance
With them.
He has.
Unfortunately, girls with Downsyndrome want to come and dance
with him.
Now he has unfortunately becomea Down syndrome snob.

Corie (37:43):
Right, he knows you're saying this, walter.

Glen (37:45):
He broke my heart.
I'm telling you he broke myheart.
I'm ready to set him up, youknow, because I was thinking,
you know, if he gets married hecan move to the US.
Yeah, yeah.

Corie (37:57):
He has other plans.

Glen (37:59):
He has other plans.

Corie (37:59):
It's like what's ours.

Glen (38:00):
Like I like him already yeah, boy, and yeah, that's it.
I can't tell him who to like,right, you know, of course.
But uh, the one of the girls,one of the parents I met, uh,
the first conference I went to,well, her daughter inclusive
educational system in the US,because of all the laws and
policies that they have, youknow.

(38:21):
So she went to junior, went tohigh school.
When she graduated from highschool, see if you could guess
what she got as a present hergraduation present from high
school at 17 years old.

Corie (38:33):
At 17?
.
I could tell you what I wouldhave wanted.
I was looking for a car, I waslooking for a ride.

Glen (38:44):
That's exactly what she got.
She did a brand new car andthis is a young, 17 year old
woman with down syndrome.
When you think that'll happenin trinidad.

Corie (38:49):
Oh my god, but that's exactly what I, I don't know, I
don't know, I don't know youknow.

Glen (38:54):
So she went to college.
After she, she went to clemsoncollege and the thing is, you
know everybody, when I hearpeople, I have a lot of friends
who are teachers, right, and youknow they talk about the fact
that, oh, those children, carthey can't survive in the school
because look what going on withthe bullies, and they are like
fix it.
That's another easy fix.

(39:15):
Fix it, there is more work forthe teachers.
You have one teacher teaching aclass with almost 40 students.
Fix it.
When you look at the models thata lot of the other developing
countries are using at the topof the chain in the educational
system, they no longer use thatone teacher to 40 something

(39:39):
students.
They're no longer teaching aclassroom only.
Yeah, it's a lot of changeshave been made and now they have
the universal design forlearning, where they teach
students according to how thestudents learn and you don't try
to force the students to learnhow you teach.
Yeah, so we still have thisarchaic system that we haven't

(40:02):
changed.
I mean this educational system.
We use that whole um theaterstyle teaching for over 100
years.

Corie (40:10):
Yeah, time to change it.
There you go.
Yeah, you're right, it's not.
It's not only a disadvantage topeople with disability.
I think it's a disadvantage toevery student, every teacher,
every business that had a higher, students who come out of that
school system.
I don't know when we will.

Glen (40:23):
We will get to that point and then everybody thinks that,
okay, we want to put ourchildren in the school and we
would cause their children toregress.
That's what people think, yeah,people, there are some parents
who got their children into likepreschools and parents took
their children out.

(40:44):
When they came and they saw achild with down syndrome in
preschool, they took the childout.
It's almost like if they feelwhat my child will catch down
syndrome yeah, there's a placelike that.

Corie (40:54):
Still people think like that.
Like I had experience, I wantto say it would have been
Newtown boys at the time andthey had done a few maybe it
might have been on the cricketteam or the zonal cricket team
or something like that and theybrought some children from Lady
Ho Choi home is it Lady Ho Choi,or yeah, and they brought them
and they paired us.
Everybody was paired withsomebody who had Down syndrome.

(41:18):
At that time everything wasDown syndrome.
I never heard the term autismthen at all and I'll never
forget the experience with alittle fellow named Larry and it
stuck out in my mind becausethere was a Larry Constantine
stand there and as a littlechild then he played cricket.
Whatever we did with the day wedid with our buddy, we had a
paired partner and I felt somuch better for the experience,

(41:41):
having just heard him talk andsee that you don't hear the same
dreams, you laugh at the samejokes you do.
At that time you feel like it'salmost like we are the outcast,
because you're thinking thatthis person is not again
contributing to society.
They're not normal, quote,unquote.
So I don't see where peoplemight feel that their children
wouldn't benefit from beingaround people who are different

(42:02):
from them.
It could only augur well forthem.
Understand the limitations ofthe schools.
The limitations of the schoolsystem go well beyond disability
, it's just.
Our school system is one of thegreatest.

Glen (42:12):
We're in a mess.
We're in a mess, and it willtake somebody with a very, very
strong will to want to make thatchange.

Corie (42:20):
You might be that person with a strong will, because
everything you're saying so farwhether it's that anger or just
your drive to learn more, to tryto do something different is
admirable.
I know the legislation issomething that you're working on
you're advocating for now.
When you first started innetwork, what was your main goal
then?
What did you want to see changeand trend at when you all first
came together?

Glen (42:47):
Well, the first thing was education no-transcript.
So we say okay, well, all wehave to do is get them in
schools.
That was not as easy as wethought it would have been Tough

(43:09):
task, right.
Yeah, that was a really, reallytough task.
So I say, okay, oh, they don'twant to watch you learn in
school, but what we have to dois change the legislation and
fix things, because, you know,the same excuses that they gave
me when I was trying to get myson into school, say like 22

(43:30):
years ago, is the same excusesthey are using now, 22 years
later.
So much things can change in 22years exactly you know, 22 years
later, and you're telling methe same thing teachers not
trained, the facility is notaccessible.
This, not the same excuses.

(43:51):
So we have not progressed atall.

Corie (43:54):
So teachers, know with utt and all that.
I know their teachers collegemight be the main thing then,
which kind of was absorbed intoUTT.
And again, my wife went throughthat program but it seems to be
now that on her syllabus shehad some training about how to
deal with children.
That would have been different.
Is it advancing there at all interms of the teacher's training
it has?

Glen (44:12):
advanced Because UTT has a bachelor's in special ed and
UWE has a master's in special edoh.
I see Okay, good, good, but ithas made absolutely no
difference.

Corie (44:23):
Yeah, because I guess the structure of the school has
changed.

Glen (44:25):
Because every year all those cohorts that have been
graduating are back into theregular school system, so they
have made no impact on gettingpersons with disabilities into
that system.
So they have all this trainingand they're not using it.
What do they say aboutintelligence?
If you use it, it's always athing without action, yeah

(44:49):
without action it's fruitless.
You know you have all thisknow-how but you're doing
nothing about it.
So knowledge isn't power, it'sthe use of knowledge.
Right, and I would tease all myfriends with that.
I said just pull down that,masters of the world, because
you're doing nothing with it,you're wasting time.
We're gonna do it for and I, Iwill ask them that right and and

(45:12):
challenge them because theymake no sense.
Your master's in special ed todo what?
Yeah, write papers on what.
I mean.
You, you have no impact on theeducational system.
Are you trying to change it atall?
Are you writing to the minister, writing to service commission?
Are you?
Are you putting forward any newideas on how we could fix this?

(45:36):
Because we, with some of thegroups that we interact with,
you know we have the downsyndrome international.
I mean they, they inclusioninternational right.
If the, if anyone googles them,they go all over the world
incorporating inclusivepractices and schools in the

(45:56):
workplaces and things like thatRight To show that it could work
.
And yet we keep making excuseshere why it can't work.
See what I tell you.
I'm always solutions oriented,but we have a lot of people here
who are very educated, have awhole set of letters before the
names and after the names, andall they're good for is to keep
coming up with excuses.

(46:17):
Yeah.

Corie (46:22):
Why it can't happen.
See, some of the things I findour society is systemic.
A lot of times, you know to meis you talk to individuals, you
have these conversations, evensome people you might say who's
in university studying thisthing?
And you all might be aligned interms of what the outcome needs
to be.
You're you're taking adifferent approach to it, and
they may be, because spreadingthe knowledge or the awareness
is important too, but I don'tknow why some of our systems are
so rigid.

(46:42):
I want to blame capitalism, Idon't want to blame again, or
slavery or how we come here, butour systems, they're so sticky
and they're so rigid.
It's like.

Glen (46:51):
One of my friends would have been glad to hear you say
that he's very much into africanhistory and african culture.
He's very, very well researched, right, and he blames
everything on the us andcapitalism.
Yeah, they seem to have it.

Corie (47:06):
They, they, they.
I mean there's the heart ofcapitalism, there's no more
market economy than them, butthey still seem to find ways to
uh, advance things.
It's almost like they're notmarried to some of these things.
You know, the school systemwill change.
It changes all the time Whereaswe still like.
When I talk to Calypsonians,for instance, it hurts me that
more Calypsos not taught inschool as literary devices what

(47:28):
I had to learn Macbeth for.
I can't understand none of thatwhen we have writers and poets
here that are doing great, greatwork great, great work.

Glen (47:40):
So I don't know where that systemic thing is, I don't know
.
So it's almost as you say, thatnot only capital, capitalism,
but also colonialism yeah,colonial, exactly.
That's still stuck in us where.
This is how it was.
This is how it always will beespecially in education, because
it's btn.

Corie (47:55):
You know this is square peg and you're wrong whole thing
.
But we'd rather shave off theedges of that square peg Because
, look at, this.

Glen (48:02):
I went to Naprimo College in South Right, so one of your
prestige schools.
Right, my friends went tojunior sec Right.
Quite a few of them aremillionaires out in Texas and
Nigeria Because they went tojunior sec.
Back then junior sec was anactual vocational school.
They had brand new equipment,lates and and all the other

(48:25):
mechanical.
So they did mechanicalengineering, electrical
engineering, and so when theycame out they went into the
energy sector and, of course,eventually they migrated right,
and my sister.
She went to a junior sec andthen a senior sec and she's in
the us.
She's a speech to speech andlanguage um pathologist.

(48:48):
Some other girls one, one ofthem is a doctor in the us, one
is a nurse in england, you knowand they went to junior sec and
then all of a sudden, junior secbecame the bottom of the barrel
.

Corie (49:01):
Yeah, it would have been the same thing where they say
they're sorry for you, they'reglad for you passing an opperium
.
You passed for junior sec.

Glen (49:06):
They're sorry to hear that , yeah they're sorry to hear
that, you know whereas it shouldhave been the other way around.
So now, as I said, according toUniversal, it's all designed
for learning.
You're forcing everybody to doacademics.
So what about the people whoare technically inclined?
You know sports or music orarts.
You know there's no opportunityfor them.

(49:27):
You know they, they would havebeen you.
You send them to a place wherethey could learn a vocational um
, do vocational courses instead,and they would have been way
better off and trying to teachthem the academics.
And then when they go UWE, thenthey had to start doing the
practical, yeah.
Or when they start aninternship which is madness,
yeah, when they could have beendoing that practical from the

(49:48):
time they were 11 or 12.
And I've okayed, like how itwas, of course.

Corie (49:53):
You know, you said something to me that it stood
out and is so relevant to this,where we don't want the systems
and the society to adjust to usenough.
You know what I mean.
We want us to conform to whatthe society ought to be.
When we are the society, whatis the society?

Glen (50:09):
We are society.
You know, everybody say whenthey want something to be fixed,
well, the government or thisone to blame or that one to
blame?
We are the ones to blamebecause we are the ones who sit
around and do nothing.
We are causing it.
We are the ones watching peoplewith disabilities being
discriminated against all thetime and doing nothing about it

(50:31):
until it happens to us.

Corie (50:33):
Yeah, you can't know until you know.
You know the thing about it isif the society not sensitized it
.
And that's why I was so shockedwhen you tell me there's no,
there's no support group,there's no, you know, for a
societal level then, but you'resaying, from a legislation
standpoint, that the ministry ofsocial development is where
legislation will fall to makechanges for people with
disabilities, and they actuallythey actually did.

Glen (50:54):
They actually have drafted legislation.
Finally, after all the yearssince inception, since 2012, you
know, we, we are lobbying forthis.
You know, um, we got thegovernment back in 2015, before
they changed, to ratify theunited nations convention on the

(51:16):
rights of persons withdisabilities.
Right, so that was a huge plus,you know, because, after that,
countries are mandated to do toput certain things in place for
persons with disabilities, andone of them, of course, would be
legislation which will affect,you know, education, healthcare
and all the things that um,housing, employment.

(51:39):
You know everything okay, soit's broad, it's broad because
it is the rally to support,empower and protect persons with
disabilities so how did youradvocacy change from just down
syndrome to disabilities ingeneral?
No, as when they asked mebefore and how we could see, the
only way we see we could makeany changes is to lobby for
legislation.
So we can't lobby forlegislation for a person with

(52:01):
down syndrome alone I see, yeah,so it have to be for everybody.
I see, you know, and it wasinteresting that the, the, all
the other groups, I mean, well,we, of course, we partner with
all the other groups, but theirvoices were not as loud, you
know, for legislation, right.
Right, you know, and I wassaying to me that was the only

(52:23):
way forward things, for thingsto change, because we cannot
continue being just charitybased, right?
Um, so I had to depend on yourgoodwill, right?

Corie (52:35):
if you feel, to paint a ramp in your new building,
you're pretty, otherwise youcould open your restaurant on
half stairs but this is one ofthe things that was so shocking
to me, because when you saidthere's no legislation because
draft legislation is still notlegislation yet there, it is a
step in the right direction, butwe still don't have legislation
I was hearing anything ingovernment buildings about
things like putting ramps andmaking it accessible to people

(52:56):
in wheelchair, people who mightbe visually impaired, and so on,
and I kind of assume it was law.

Glen (53:00):
No, it's not yeah, it's not law, so it's, it's still the
.
The government cannot forceanybody to do it unless it's put
into law.
So, like the national policyfor personal disabilities is a
guide.
Um bureau standards has has abuilding code manual where it
tells you all the correct sizesfor the doors, stairwells,

(53:22):
things like that, elevators, youknow, make it accessible for
persons with disabilities, makeit accessible for everybody,
persons who are visuallyimpaired, physically, you know,
challenged.
Everything is in place butthere's nothing, no legislation,
to say.
I have to follow that buildingcode.

Corie (53:43):
Yeah, like even when I was building my house, right,
there's the building inspectorin the regional corporation.
You have to go there to getyour plans approved, number one
and then you have to stick tothe plans when you're going to
build the house.
And then they must approve,give you final approval for that
.
For the completion certificate,everything.
It's all about walls, it's allabout paint, it's all about this

(54:04):
and drainage and all thosetypes of things.
But it wasn't until I wastelling you I had achilles
injury and uh, well, now you'redone.
You had to do surgery andyou're done for six weeks.
For the first maybe week or twoin a what do you call it?
A splint.
So you're not in the booty, youcan't walk, and when I try, I
have a flat house and I'mthinking, okay, I build a flat
house, that's good.
You know what I mean.
It's all about people.
As they get older, they'rewalking up and down stairs get

(54:26):
harder.
I think I'm good to go.
It's only when I come home andit crutches the first day I to
the house that is high and thenanother step up to go to the
bedroom area because it lookednice.
It was a nice thing when he wasbuilding the house make the
thing look separate from and boylisten the kind of tiles we use
and them step up.

(54:46):
It was a hazard every time wehad to.
I had to because at some pointmy wife going back to work, I
home alone, and I remember onetime trying to warm some food
right and no one crutches and Ibuy the microwave and I can't
figure out how to reach from themicrowave back to the cellar.
I just have to buy themicrowave and eat.
So you're saying there'snothing that tells people from
an infrastructure standpoint?

(55:06):
Okay, this is what you'rebuilding a house to code in case
of anything or nothing likethat.
We don't have that.
Yeah, we don't have that.

Glen (55:14):
So it's really just goodwill of people, just good.
So it's really just, it'sgoodwill of people, just
goodwill, just goodwill.
And you see, that has to change.
So a lot of people still say,oh, we don't need legislation,
we just need more awareness.
We've been pushing awarenessfor the last almost 90 years.
If they could go and ask the,ask um, the, the current
president of blind welfare, orthe, the chairman of parvy, you

(55:38):
know persons with visualimpairment.
God asked them about that.
They've been around for a very,very, very long time and ask
them all the awareness thingsthat they're doing and nothing
has changed during.
You know, and people even talkabout that.
Where you have people who arevisually impaired, uh, they are
sound engineers, they're doingall kind of jobs, literally all

(56:01):
kind of jobs, as opposed to justweaving baskets.
You know before, you know, whenI was growing up, that's all
you could do.
But now they're doing all kindof jobs.
I actually worked when I wasworking at the Ministry of
Social Development.
There were two young women whowere with visual impairments and
they were doing the same job Iwas doing.

(56:21):
You know, they had an app thatwould talk to them.
So they have their headphonesin their ears and they're doing
the same research and everythingand developing the same papers.
It's because it could be done.
But what's the difference?
Getting the opportunity right?
So they were lucky, they wereable to go to school to get that
opportunity.
But when you're unable to getinto the school in the first

(56:44):
place, so You're starting out onminus, you cannot be educated,
therefore you cannot beintegrated or you cannot be
included, so you're not gettinga job.
You're cut off, literally cutoff from society.
And You're cut off yeah,literally cut off from society.

Corie (57:01):
And we cut off all families too, because it means
that you then, as a parent, youhave somebody who's dependent
for their whole life.

Glen (57:08):
Their life or your life.
And now you know children withdisabilities are living longer
than their parents, of course.
So your entire life until youdie.
Yeah, you know, you take careof them.
You know the first time my sontold me yeah, I've.
Well, of course, at this age Ihave issues.
I had a very active lifestyleafter learning how to do

(57:29):
everything that my father didn'tlet me do.
Right, you know I was very,very active.
So you know.

Corie (57:34):
Now back issues knees issues, all that kind of thing.

Glen (57:37):
So sometimes I'm watching television and I get up and I
stretch, you know, tyree's,watch me and say I'll take care
of you, dad.
I was like damn, there we go.
You know, because when I usedto be thinking that I have to
take care, of course, for therest of his life, for the rest
of my life, you know.
So to of hear him say that I'llsay, yeah, I'm doing a good job

(58:01):
?

Corie (58:01):
yeah, but as a parent it might be so easy to say, just
just, coddle, just do everythingfor you know, you know you have
somebody who you have to raiseand just just take care of them.
So how important is it for youto to see him get that
independence and do some of thethings you would have seen being
done in the conference?

Glen (58:19):
Yeah, because it's thanks to the conference, because I
used to do that.
Oh, it started off like that.
Yeah, because you don't knowany better.
You know, as far as you'reconcerned, everybody's saying it
.
When you have people, right,who, as I said, have all these
letters before the names andafter the names, letters before
the names and after the names,and they're telling you he might

(58:39):
never talk, he might never walk, he might never do this, he
might never do that.
Yeah, that's gospel, exactly.
They know better than me, right?
They are educated, they have alot, of um, academic experience
plus work experience in theirfields, right, so I'll listen to
them, but then at them, as, uh,uh, we were going out, so I
went to help him take the shower.

(59:02):
Come, I put on clothes, and I'mgoing to put the clothes on him.
Every time I put on the t-shirt, he pull it off.
I'm like yo, you gotta go nowput on this t-shirt.
No, no, pull it off.
I'm like what's going on withthis boy?
And he took up another t-shirtand this one, daddy, this one,

(59:24):
no, I put that back in thedrawer, close the drawer, blam,
pick up the one I wanted to puton him.
And he took it off again andstarted to try to tantrum.
I didn't tell his mother.
You deal with that?
yes, and she just leave.
Just leave him wearing a ponyt-shirt.
Now, the t-shirt he wanted toput on was matching the pants,
was matching the outfit.

Corie (59:44):
He do better than you.

Glen (59:45):
Yeah, you know.
And then afterwards I startedto understand he could make
choices, you know, and we startallowing him a little more rain
to make choices.
When I go to shower, I do justlike what my mother used to do
Wash here, wash there.
This is the rag.
Show him how to put soap on it.

(01:00:06):
Wash here, wash here Importantparts out.
You know we are playing.
The shower is not a place todance and splash up water.
And he learned how to do it.
The best calling part was whenI went to one of the conferences
.
I saw this guy walking with hisdaughter in a stroller and she

(01:00:28):
had a phone in her hand and shewas playing a game.
So I watched him pass and Iasked him.
I said what kind of phone doyou daughter have there?
He say iPhone.
I say iPhone.
I'm like how old is she?
Three years old, I say.
But that is her phone.
Because I mean the phone.

(01:00:49):
What is young?
People call it a bejewel.
Yeah, yeah, yeah, it's morerhinestones than one of Dolly
Parton's dresses.
So he said, yeah, yeah, she hadher phone a long time and he
pulled out his iPhone from hispocket, handed it to her.
She rushed down her phone, wentinto his phone, find the app

(01:01:13):
because I know all them iPhonesconnected on some cloud or
whatever and she startedcontinue playing the same game
she was playing.
And when I study all the timeswhere Tyrese pick up my phone,
put that down.
That's not a toy, Do not touchthe phone.
You know that come down withlike a ton of bricks.
I was like what the hell thisman, three year old daughter,

(01:01:36):
have a smartphone.
So no friend, I come back andbuy a phone for him.
And he was.
How old was he then?
I think he was probably aboutabout 10 or something.
He never had to change a screenon his phone yeah, I can't tell
you I can't tell you how manyscreens, you, how many phones

(01:01:57):
I've had.
He's probably on his what, onhis third phone I am probably on
my what boy, the number upthere, yeah, the number up there
.
I feel an ambassador say I pullthat phone out of my pocket.
We're all in the same boat,yeah boy.
And I say, look at that, henever.

(01:02:20):
I could count how when he, whenhe's doing dishes, I could
count how many glasses or plateshe's cups he's ever broken we
should label myself as special.
We call them special exactlywhen I think about how much
glasses and plates I broke as anadult, that is not a child.
I don't want to go back as achild, but as an adult, of

(01:02:41):
course, and he has not, you know.
So I tell him well, you, youwashing all the ways from now on
yeah, I'm bad, that's not badat all.

Corie (01:02:50):
So you feel like parents do this.
Do the children at this serviceby taking over for them and not
giving them their independenceyeah, a major disservice because
and what I was trying to tellthem?

Glen (01:03:00):
you see, they think it's easy, right, like I used to
think it would have been easyfor me to to give him a shower
and dress him right.
But in the long run I'm makingthings harder for myself because
the sooner I made himindependent, things got easier
for me, and that's why I keeptrying to tell the parents.

(01:03:20):
They would keep saying that oh,glenn, you don't understand my
son, not like Tyrese.
I say, no, I do understand you,not like me, I see, because
you're not prepared to do what Iwould do at all.
Because, as I said, it's thesame thing.
They look for the easy way out.
Know, you want to help them somuch and you don't understand

(01:03:43):
you're not helping them, you'rehindering their progress, you
hind, you stopping them fromactually learning and developing
, developing different skills,because you want to do
everything for them yeah, likeit's the same with my son.

Corie (01:03:56):
You know, my son is 12 now and I remember the first
time he always, you know, hegrew up it was just three of us,
right, so he don't have anysiblings or anybody in the house
.
So he's taking pattern fromadults on what to do.
And one time he decided, youknow they go out and think and
he wants to make ramen or hewants to make eggs or something
he must be seeing on YouTube andlisten, the and listen.
The first time this man went inthat kitchen it was mayhem and

(01:04:19):
I had to kind of calm myselfdown and get a little patience
on my wife and I said I saidlisten, it didn't always be so
he now learning to do it.
He go, have a little thing,I'll give him the guidance, come
on.
First instinct is the samething.
You say.
I want to shout and say don'tcome back in this kitchen again.
But now I see that man get up ona morning before I get up.
He don't wake up.
He set his alarm, he wake up,he make his breakfast, he
organize everything.
So most mornings to wake uphe's come and said Dad, there we

(01:04:42):
go.
He don't like to reach nowherelate.
So he said Dad, let me move.
You know what I mean If youleave home by about quarter to
seven.
He in school by seven.
He good To the point where theother morning he tell me,
because he was ready, makecoffee.
He said Dad, show me how to makeyour coffee.
I could do that for you so wecould leave here by quarter to
seven.
I like what you're saying.
He said, yeah, let me do it,because I realize you have a

(01:05:05):
problem leaving here by seven.
So I wonder how different itreally is, because you have to
go through that period as aparent where you let them go,
they make the mistakes if they,they make the mess, as they say,
in the bathroom and and it'smore a role of functional
guidance and getting them to thepoint because you can't know
where you know you'll just getbetter over time exactly, and

(01:05:26):
even with thais now we let themdo a lot of things, but you know
, we still the fear factor bythe stove.
All right, you know so I'mwarning you.

Glen (01:05:40):
my wife carol, hearing some noises in the kitchen, so
she get up next time.
So I still line up here openingnext time diaries what?
So I jump up and fly outside.
The noise she was hearing wastyrese was making breakfast.
He already fried the eggs, soimagine the stove is already off

(01:06:06):
, but the frying pan was stillon the hot stove so it was just
sizzling.
I see, right, he had the butter, the cheese outside.
He sliced the cheese already.
So all things you know, we lookat this cheese here because
we're afraid for him with theknife.
Right, he sliced the cheesealready.
And the noise he heard was himtrying to toast the bread.

(01:06:28):
Right, but the toaster wasn'tplugged in.

Corie (01:06:31):
So every time, he presses it it flies back up.

Glen (01:06:32):
And he started to get vexed.
So he presses it on and itflies back up.
So that is the noise that wokeus up.
So he had already turned on thestove, fried the eggs, turned
it off, yeah boy, and we didn'teven know Mm-hmm.
So he said you see that We'llshow him how to do it, of course
, of course.

(01:06:53):
So he wouldn't do it on his ownlike that, mm-hmm.
Another time I was out in theyard doing some work and I had
started doing laundry and I leftit to go and see about the dogs
and my goodly son come and putsoap and started the machine.

(01:07:16):
He put about half a bucket ofskip a little gotta be yeah.
So it's a good thing it wasskip and not breeze, otherwise
you know it sets up your wholehouse.
Yeah, you know.
So I was just like I gotta takeout everything and wash it out,
but I can't give accident.
So we start showing him how todo it.

(01:07:38):
So you see, so it was alearning process for us, because
we're still thinking hewouldn't be able to do it.

Corie (01:07:47):
Yeah, it's our fears.
It's really projection, youknow.

Glen (01:07:50):
As we tell parents.
Now we put our preconceivedlimits on the kids.
So even all those people theacademics and the people with
all the experience, all thetherapists they still have their
preconceived limits on whatpersons with disabilities can or

(01:08:11):
cannot do and it still stopsthem from going any further.
You know, even as a coach,right, you'll hear all trains of
thoughts about how much weightpeople should lift.
You know if they are gettingolder or what.
One of my clients was coming upto her 60th birthday and she

(01:08:33):
wanted to lose weight, get fit.
All the things I said.
Well, those are not reallymeasurable goals, you know,
because it's how much weight youwant to lose.
You want to be fit enough to dowhat Run up a flight of stairs
or run a marathon or run a 5K.

Corie (01:08:44):
So you had to lose, right ?
You want to be fit enough to dowhat?
Run up a flight of stairs or ona marathon, you know.

Glen (01:08:47):
So you had, you had to know exactly what you wanted to
do and we started workingtogether.
And at her 60th birthday,people couldn't recognize her.
Her sons were both uminternational footballers at the
time, playing for differentclubs.
Right, and when she sent them avideo of her leg pressing 16,

(01:09:07):
45 pound plates, oh, wow, wow,that's impressive.
Yeah, one of them what, what?
are you doing?
Why give you so much weight topush for 10 reps now?
She didn't start off like thatright.
She started off with not oneweight on the leg press.
But the whole thing is and shenever lifted weights before but

(01:09:28):
the whole thing is removinglimits, right, and of course,
with guides, you know.
So you're doing the right thing.
You start off slow, you warm upand you just keep going Right,
right.
But the whole thing is removingthose limits, of course,
because I cannot look at you andsay what you can or cannot do.

(01:09:48):
I can't do that.
But yet we do that with peoplewith disabilities all the time.
Yeah, you know, we just watchthem and okay, that's it.
Can't be employed here, can'tgo to school here, can't do this
, can't do that.
And we don't know.
Everybody with a disability isdifferent.

Corie (01:10:06):
Yeah, that's the other thing too, like the whole
discussion about a spectrumagain, which was a word I didn't
know at all back in the day.
People, even with the samedisability or the same condition
, it's different variables.
Like I was telling you about alady I read about by the name of
Temple Grandin.
She's on the autistic spectrum,but she's a well industrial

(01:10:28):
engineer.
She does a lot of design, soshe's also into uh animals.
So what she did was she wasable to look at the way uh cows
were being slaughtered andrealize that, listen, these all
the stress and all the animalstoo much.
You could do this in a muchmore humane way that keeps the
animals less stressed, whichwould lead to better milk,
better, better, better dairy,better beef, for instance.

(01:10:48):
And she redesigned the wholesystem and the point that she
was trying to make is that herability to see things that the
people who we call normal,normal thinking people wouldn't
be able to see.
Because she said, I could seewhat the cow see, and so she's
the same thing.
You say no, no, she said allthese academics who've read and
all that.
Well, there's a form ofintelligence, but we mustn't

(01:11:09):
limit intelligence to that.
So she's a huge advocate forpeople who are on the spectrum
or any disability really to jointhe working world, and she
keeps saying, yes, if they jointhe working world, you're going
to have accommodations for them.
We have to adjust.
So a big part of her work isshe might be 70 something now,
but her life's work is to helppeople like myself adjust.

(01:11:31):
So how we think about people orsee people differently, so that
we respect different types ofminds that we have, and just
where you start off tocontribute to society.
You know, do you think it'ssomething that we we could work
towards entering that?
But I feel like we're so farfrom it when you talk about it.

Glen (01:11:47):
Well, that's that's the thing we, we.
We are far from it, but it'snot impossible and it will not
take as long as we think, right?
You know, I remember in one ofour earlier discussions that you
mentioned, um, not reinventingthe wheel, right?
So, even with working towardsthe disability legislation, we

(01:12:08):
have so many developingcountries.
Dr Paul Richards, at ourconference this year, at the
Hyatt for Wolledown Syndrome Day, he actually called out a list
of all the countries that havedisability legislation.
It was a very long list, but weknow the list.

(01:12:30):
We're definitely not on it,right?
We have even barbara signedtheir legislation earlier this
year, right?
But the whole thing is we don'thave to reinvent the wheel and
we don't have to dumb thingsdown either, because that's
another thing we do very well,right, we'll take part of this,
from here, part of this, fromhere, part of this.
We'll leave out this partbecause we don't need this, but
it comes like, you know, thebible.

(01:12:51):
You know it's in chronologicalorder if you take out a segment
it would make sense it mightmake sense exactly, and that's
why you know, we end up on thewrong side of the law a lot of
times.
And those defense lawyers makea lot of money, of course,
because they leave enough gaps.

Corie (01:13:07):
Maybe that's why there's gaps.

Glen (01:13:08):
Probably Right.
So I remember having thisconversation with a very strong
advocate back in ED and theywere telling me that, oh, we
can't just look at theirlegislation.
They have worked over 50 years,you know, to get their
legislation, their legislativeagenda, to this point and we

(01:13:32):
need to go through that sameteething process.
I look at them and say, well,you ought to be crazy, I don't
have 50 years, just copy Exactly.
I say you're mad, or in 50years I'll be dead.
I don't have all that time towaste.
And you see, that's what peoplekeep saying.
I mean, since I started innetwork first, people tell me
don't start in network, it won'tmake sense, you know, because

(01:13:53):
the government doesn't care,society doesn't care, so it
doesn't make any sense doingthat and advocating I still
start in network, don't try tomove towards the legislation.
We still got the UNCRPDratified, we still got the
national policy on persons withdisabilities amended and now

(01:14:14):
we're pushing towards finallygetting legislation to show how
it will benefit persons withdisabilities and literally
change their future and evenbenefit us as a real
self-society.
You know, we really need tomove away from that charity
model of looking at people withdisabilities to the more social

(01:14:34):
model of accepting them as partof society instead of leaving
them on the outside, of course,because once we continue leaving
them on the outside, societydoesn't know them, they don't
know society, so they'll neverbe apart.

Corie (01:14:48):
Yeah, we're not putting ourselves in a position to
benefit from them at all At allBecause one of our catchphrases,
opportunity is revealedpotential.

Glen (01:14:56):
So they said, I can't say what you could do or cannot do,
but the whole thing is, I'llgive you an opportunity to try.
If I don't let you try, howwill I know?
So it's the opportunity thatwill reveal your potential.
And through that system westarted our mentorship program,

(01:15:17):
you know, with corporate TNT,and through that we have young
adults with Down syndromegainfully employed, some of them
who did not go to an inclusiveschool but given the opportunity
to work, they learned what theyhad to do and they're able to
function.
You know, we we see a lot of um.
Well, now you see a lot.
You see a lot more now becauseof social media.

(01:15:38):
But back in the day, the onlypeople you'll see with dancing,
gym working, you know, and likein the day, the only people
you'll see with Down syndrome,who can you know, like in the
movies and things from the US,you'll show them standing by a
door hugging people going in andout.
So their job is a hugger.

Corie (01:15:52):
Right.

Glen (01:15:53):
Right, they had a television show, not born well,
they are born this way but thisgroup of young adults you know
that was an Emmy winning show,but not that one.
Adults you know there was anemmy winning show, but not that
one.
They had another one where theywere depicting the life of a
couple with down syndrome, butthat was the worst thing that I

(01:16:13):
saw to myself, because one theyweren't living independently,
they were living in like anannex of one of the parents home
and the mother would come in aweek them up in the morning and
give them breakfast and get themready for work, and then when
they go to work, one of them herjob was to um, I think put

(01:16:36):
stamps on the envelopes, andthey were sitting on the floor.

Corie (01:16:40):
you know putting stamps like a 12 year, like not a
12-year, like a six-year-old.
Yeah, you know so I'm like thisis an adult, isn't that
dependency thing, exactly?

Glen (01:16:47):
Of course this is an adult , and when I look at where my
son was working for Aeropostcomand he was functioning just like
one of the other employeesRight you I actually went to you
know, went to the airport and Istood up in the manager's
office.

(01:17:10):
I stood up in the manager'soffice and he said look what
will happen.
And I see a little alarm wentoff.
I see him jump up from his seat, he go on.
A little chip of paper poppedup in a small machine.
He grabbed the chip of paperand he went down into the
warehouse.
So him, the manager told me,come with me so I watching.

(01:17:31):
So he's walking with thislittle chip of paper and looking
at the shelves, looking at theshelf, and then he stopped.
He took a package off the shelf, he scanned it and then he
walked to the exit, to the fromthe warehouse to the front and
scanned it again and took it tothe front, you know for
whichever um customer came topick it up and then he came back

(01:17:55):
in.
So you know, of course I'mthinking the piece of paper of
row 7, aisle 5, shelf, whatevernumber, or anything like that.
The piece of paper was abarcode, I see.
I'm like.
So how he know where to go, youknow, but he learn how to do it

(01:18:16):
of course he learn.
For it to come off the shelf, hehad to scan it off the shelf,
and then for it to leave thewarehouse, he had to scan it
again.
So when he check the recordsyou can see, okay, it left the
shelf at this time, it left thewarehouse at this time.
Makes sense, accountability.

Corie (01:18:30):
And I didn't even think yeah, he was been doing that
well.
Imagine if you all didn't makethe sacrifices to teach him to
do the things home.
He would not.
He would not be much, much of afunction in our working space.
So exactly, it's so important.
And you were telling me as wellthat you have one child with
down syndrome who is doing seorecently.
So so what are your possibility?

Glen (01:18:49):
again to secondary school yeah, so we're waiting to see
what will happen.
We had one, um rachel, lastyear.
She did seo and she went to hercivil.
So she was always at at nineyears old.
She started her own cupcakebusiness.
Yeah, you know Rochelle's SweetTreats, oh nice.
So that's still going well.
So she's doing that at Seville,continuing with the cooking and

(01:19:12):
making, of course, going intoother menus, you know.
So she's doing very, very well.
So, pedro, now we are waitingto see what the results will say
.
You know, with him it was afight to get him into school.
It was a real challenge withRochelle as well.
Her mom had to go and sit inthe school with her because they

(01:19:35):
didn't provide the student aidas they're supposed to, of
course.

Corie (01:19:38):
yeah, yeah, same thing with Pedro, yeah same thing.

Glen (01:19:41):
The system is flawed.
You know when you think aboutit and, as I said, it's the same
excuses they give when my sonwas going to school.

Corie (01:19:50):
I like the spirit you have, glenn, because I don't
like when people say, okay, day50 has advanced.
At one point there was zero, sowe want to push back the zero.
You know, it's like we don'twant to start with day one at
all, ever in anything.

Glen (01:20:09):
Start somewhere, zero.

Corie (01:20:10):
You know, it's like we don't want to start with day one
at all, ever in anything.

Glen (01:20:11):
Yes start somewhere.
Everything flawed, everythingflawed.
When you start it flawed, yeah,you fix it as you go along.
Yeah, we just fix it.
Yeah, it is, it is easy fixes,but you had to want to fix it.
You see, we we have.
Um, this was so interesting,this analogy, right.
I was on a course with someCaribbean counterparts, so there
were two Jamaican guys on thecourse and one time, you know,

(01:20:35):
the audience began to pick on.
They want to fight all of us,over 60-something of us and they
want to fight all of us.
So they said that, oh, we aretoy soldiers all the trinnies
yeah, we are the coup and wekill nobody.
You know we are toy.
It all happened in jamaica.
All of them dead, somethingdead, you know.

(01:20:58):
And then one of them went on tosay why we are toy soldiers.
He said during the slave trade.
You know, when the ships comingdown selling slaves, they start
with Haiti, and then Jamaica,yeah, and then they're coming
down.
So the last person on the chainwe get all these sick, lazy,

(01:21:21):
weak slaves.
So I'm listening to them sayingthis and you know we're getting
angry.
But when I do something, Ithink about it.
Where's the first slaverevolution and the most?
Yeah, and up to now, themHaitians can't get together.
It causes all the war-liketribes, that from different

(01:21:43):
tribes, of course, yeah, tribes,and then Jamaica and then
coming down, and when we look atour mentality, they could do us
anything and once they stop theFET well, yeah, what's kind of
coming back every year?

Corie (01:21:58):
Is that something to celebrate?
Is that something to celebrate?
Yeah, so I couldn't give X tothem.

Glen (01:22:02):
Yeah, yeah, yeah, I couldn't give X to them.
I understand, I was like damn,but we could fix this, yeah, I
think so.

Corie (01:22:09):
I think so, like, even, as you say, with rochelle, with
the cupcake business.
Through the same podcast, I mettemple grandin.
Um, there was a man and his son, I believe his son had down
syndrome as well and he wasdoing socks.
They started making, they had asock business and the boy would
deliver them for himself.
He said he wanted in a certainradius, he wanted to deliver
them himself, and that kind ofthing.

(01:22:30):
So it's not, it's not that wethe limits, as you said, we, we
put on people.
So you tell him as well that,in terms of the 21st of march
and the idea of socks and so on,that's something you would have
advocated for, because it'sbecome very, very popular in
Trinidad now.
Yeah.

Glen (01:22:43):
Well, we, down Syndrome International, started that in
the UK Right, and even when we,for the 21st of March, for our
conference, we always bring downa very accomplished
self-advocate with Down Syndromejust to show parents this is
where your child could be Onceyou keep them back, once you
keep them back, once you stoptreating them special and once

(01:23:04):
you teach and empower them.
This is where they could beright.
Because people always feel, oh,that could happen in the us,
that could in the uk, that can'thappen here.
It could happen here.
We have all the examples.
You know my son is working andhe doesn't have that.
All the verbal skill he couldspeak, you'll understand.
But you could follow directions, he could follow instructions.
But we have Kelly working at,permanently employed at

(01:23:27):
Scotiabank.
You know we have Suria workingat Hyatt Regency.
You know Lisa used to work atHyatt Regency as well.
Danielle, you know she was atUnicot, you know.
So we are getting theopportunity, some corporate tnt,
because they, they arepartnering with us and they are

(01:23:48):
seeing that, hey, they couldactually function add value yeah
, they could actually function.
And everybody talks about whenum christy was the first young
woman with down syndrome to getojt contract, you know, with
Officer of the Prime Minister,jenda Anute, and they said she
was the life of the officeBecause she's very quick with

(01:24:09):
her very sharp talk.
She used to have everybody goin.
You know the office, and so lookat that, all of that is missed
out because these people werenot given an opportunity.
They didn't even get to go toan inclusive school.
So if they did get theopportunity to go to an
inclusive school, what?

Corie (01:24:30):
would have happened.
It would be leaps and boundsahead.

Glen (01:24:33):
Yeah, as well as the people as you mentioned before,
because everybody feels, oh, wejust want to get our children in
school, so there's no benefitfor the other students.
But the other students, youhave to learn them.

Corie (01:24:49):
You have to learn about them and you learn about
yourself.
You know, glenn, in the in inis, learn about yourself.
You start to understand yourown patience, your own tolerance
, your, as you said, imagine youbeing angry about other parents
who taking a lot for granted.
You imagine what a little childcould see if my son was to be
around, be around somebody whowas differently abled or any
kind of disability.
He could sort of say, hey, thislazy style I have doing this,

(01:25:11):
or I don't want to stay up latedoing this.
Look what this man doing, lookwhat this little girl doing.
He might see himselfdifferently.
But, boy, as a society, youthink legislation is going to
make that change?
You think legislation, we as acountry, will be famous for
passing law and doing nothingafter you?

Glen (01:25:26):
know, you think legislation gets us there.
That's why I have two attorneyson my board, right?

Corie (01:25:31):
that's the difference also, once you get in law, you
active or tag you once I get,once we get out, we'll be very
active, right?

Glen (01:25:39):
yeah, because the whole thing, as I said, it is an easy
fix, but we are the one to fixit.
Yeah, yeah, if we don't want tofix it, it will never fix and
we'll just continue makingexcuses.

Corie (01:25:50):
Yeah, well, one of the things I always look at with the
politics too is that we have arecent change of government and
if you have draft legislation,then I believe it's Van Damme or
it is social development now aswell.
And you know, we have atendency that when we come in
place, I have some friends onsome boards all of them fired
now because they have a newgovernment.
So the idea is to scrapeverything the last government

(01:26:11):
do and start afresh.
So you're ready to deal withall that when you go back in,
you partner with the ministriesand I guess you have to deal
with whoever in power.

Glen (01:26:19):
Yeah, we've already written to them, you know,
trying to set up meetings andwe're hoping that they don't try
to reinvent the wheel.
Right, we're hoping we haveabout three different existing
drafts for that legislation andyou know it's up to them.

(01:26:45):
They could take it from thereinstead of starting from scratch
, you know, and actually be theones to make a difference in the
lives of persons withdisabilities.

Corie (01:26:48):
Of course, of course I'm confident that it will get done.
You know we have to.
We have to hold our governments, or what you're going to call
political parties.
It should be like a relay, butwe street it like a set of
different hundred meters ratherthan a relay.
You know everybody want to goback to the start line.

Glen (01:27:03):
Yeah, it's something else to see, and we keep setting back
the country Of course we can'tget to the 50 years if we never
start.

Corie (01:27:10):
And um, the, the, the.
The idea that we're doingsomething for a group of people
with disabilities is alsosomething when I was talking to
you, shedding light on the factthat any one of us could have to
deal with that tomorrow.
Life does change.
All kinds of different thingshappen.
I was telling you about.
I have a little sister who twoyears ago got in a car accident

(01:27:31):
that was fatal for two peopleand she spent a long time in
hospital and a long time inrecovery.
I was seeing her just thisweekend.
She's going through physicaltherapy and everything.
Thank God weekend.
Uh, she's going throughphysical therapy and everything.
Thank god she could.
She could walk with a lot ofhelp.
Now she's learning and I sawwith a coloring book she's doing
occupational therapy and itmakes you realize that it's not.
It's not some some distantgroup of people.

(01:27:53):
It could be.

Glen (01:27:54):
It could be anybody yeah, literally could be anybody you
know what?
um, there's this police officer.
I can't remember his name, buthe lost his vision.
I think he was in his, in his30s and, you know, compared to
the other person who was bitterand angry, he's very
instrumental now in helpingpeople with visual impairment,

(01:28:15):
even people who have been blindsince birth to use assistive
devices.
You know he could, they couldconsult with him on which are
the best brands, you know whichare the best software and
everything.
And that's incredible, ofcourse, and those are the things
that we want to hear you know,not not throw your hands up in

(01:28:35):
the air and wave it like we justdon't care.
You know, and or the woe is me,or we just hug one another and
sit around and sing kumbaya.
You know, we have to save oursociety and all of us have to do
it.

Corie (01:28:53):
You know we can't just continue to just sit back and do
nothing yeah, yeah, and evenwhen, the way you put it that
you live past a certain age, allof us gonna deal with them
issues, yeah.

Glen (01:29:06):
I deal with it now, if you give me something to read now.
I don't want my glasses, soI'll be.

Corie (01:29:13):
In any other country.
I legally blind you.
If I take off my contact, Idon't know.
You're still there.
I can't see nothing, you know,and that's why Tyree said you go
, take care of yourself, you'rein good hands.
Exactly, but I wonder how much,as you say, changing the society
, because when we do get to thatage and we've not built homes
that could accommodate awheelchair, or another ramp, or

(01:29:33):
all the doorways too small or,like I say, a step up and a step
up, or you're telling me tobuild these massive houses with
all the bedrooms upstairs.

Glen (01:29:42):
Yeah, I had a lot of friends there.
You know, as they get olderthey have to sell their homes,
the dream home.
You build a nice dream homefive bedrooms upstairs, a half a
bathroom downstairs, you know.
So anything happen to you, youdon't have not one bedroom
downstairs.
So all of them starting to getolder now and they can't
negotiate these stairs.
And now the stairs are nice andpretty so you can put in a

(01:30:03):
sliding chair because it wasn'tdesigned for that.
So you see that that is nothingin people's minds at all.
That we're going to get older,yeah, we won't be able to do
that.
So I'd rather sell the home andmove into a flat home, of
course, and even when they haveto renovate that home, you know,
to make it suitable yeah, yeah,you had to renovate it.

Corie (01:30:24):
You have to do something, build a bathroom downstairs.
Many times, or even sometimes,you know, we get to the point
where you have to take care ofyour parents.
There's a lot that you have toadjust.
So that's why I say I trust theway you say in terms of
legislation, because again,going back to that corporation
telling me to put drainage, if Idid not put drainage in my
house because drainage must becosting me extra 50 000, I would

(01:30:45):
not put and then I would becausing a hazard to myself and
to my community.
Same thing I was telling youfrom a business standpoint if
ocean will come in and say wehave certain things to do and
it's left up to me, as you say,goodwill or charity, I might
just not do it as an additionalcost to me as a business.
Like our one office we have, II would not known at all.

(01:31:05):
The railing is, it's dangerous,it's just too low.
It looked nice and it have arailing, but just too low.
A man lean over that is problem.
So thank god they have a oshathat come and they see it,
because who feels it knows we'vehad people who've been damaged
on how excited.
We have had people who passedaway while working with us.
So until you deal with that,when you now start an offer

(01:31:27):
business, you might notunderstand why that legislation
is important.
So I feel like if thelegislation is there, that helps
me protect myself from myself.
So build a house one time wherewheelchairs could go, because
you could end up there.
You don't know what tomorrowbrings.

Glen (01:31:45):
You really don't know what tomorrow brings you.
Really, you really don't know.
And the whole thing is we.
We are our brothers keeper.
You know, we've become veryselfish, self-centered, you know
it's, it's amazing.
I I used to see that before,you know, when I'm in the office
and parents would come in withtheir children in the morning,
you know, drop off their bagsbefore they go to take them to

(01:32:06):
school, and they would just dragthem through the office and
they, the parents, are sayinggood morning, the children are
saying good morning.
I was like there's no way Icould enter any building, any,
any office anywhere with mymother and not say good morning.

Corie (01:32:26):
That happened the next day.

Glen (01:32:30):
My head flying forward with one clout, but yet we have
that now.
You see people walking intobuildings.
If you're walking and tellsomebody good morning, and they
look at you like why are?
you telling me good morningBecause they don't care about
anybody, they only care aboutthemselves.
Yeah, you know, and and that iswhat we we have to change that

(01:32:51):
in society.
But it has to start in the home, because if parents not
teaching their children that andthis is across the board, this,
this is not only uh peoplewould say, in fact it's,
sometimes it's even better inthe low-income homes, you know,
than in the higher middle-incomehomes, you know.
It's actually better, you know,where there are some parents

(01:33:13):
still teaching that their kidsmatters and things like that
yeah you know, but everythingreally starts in the home.
So even with the empowerment ofpersons with disabilities, it
has to start in the home andparents have to do better.
I always tell them you're goingto die, so all this protection
where you're protecting yourchild, what's going to happen

(01:33:33):
when you die?
Then you just leave them up tothe wolves because you didn't
even try to teach them somemartial arts, some good touch,
bad touch.
You don't do anything.

Corie (01:33:42):
Yeah, basics, you can't cook for yourself.
Yeah, what happens so?

Glen (01:33:47):
then you just leave them.
You're protecting them fromeverybody, and if anything
happens to you there, they arean adult.

Corie (01:33:54):
Yeah, the mercy of everybody.

Glen (01:33:55):
Yeah, the mercy of everyone, and that's another
part that we have not factoredin right, and that's why our
legislative legislation is tosupport, empower but also
protect persons withdisabilities.
A lot of the existinglegislation around the world
they have different penalties ifa crime is committed against a

(01:34:18):
person with a disability.
I see, yeah, there will be.

Corie (01:34:22):
Different layer of protection.

Glen (01:34:23):
Yeah, the penalties are over 100% more because that
person is vulnerable.
Of course, they can't protectthemselves and you're taking
advantage of them, so thepenalties are different as
opposed to if the crime wascommitted against you.
I right, and those are thethings that we need here, when
you hear how many persons withdisabilities, young women, are

(01:34:48):
taken advantage of by familymembers, by strangers by
neighbors.

Corie (01:34:52):
Yeah, I guess you hear all those stories?

Glen (01:34:54):
Yeah, and you know those stories do come out in the
newspaper because the familykeeps it hush.

Corie (01:35:02):
Mm-hmm.

Glen (01:35:03):
You know, because whoever the uncle is or whoever the
brother is or the cousin, youknow things like that.
So these young children sufferat this relative, suffer at this
neighbor who the mother istrusting to look after them
because she can't stay home, asyou said.
She can't stay away from workall the time and just tell the

(01:35:24):
neighbor go, just watch mydaughter.
It's her girl policy, notknowing the neighbor taking
advantage of your daughter everytime she leaves.
She only found out a time andshe got back early, of course.
Yeah.
You know, I've caught them, wow,you know.
So who is protecting?

Corie (01:35:38):
them and, yeah, the measure of a society is oh, you
treat your most vulnerable.
To me that's what it is, and ifnobody's protecting them, then
we're in some trouble.
We're in some trouble.
Again, I want to personallythank you because the work
you're doing, I appreciate thelevel of detail you're going
into it.
I mean you're in a situation,or trusting to a situation, that

(01:35:59):
I think most men or parentswould say, hey, this is some of
the worst news you could get.
You know, and you've taken itand chosen to use it to help a
lot of people at this level ofthe household.
Well, first, the individualthemselves, the parents and the
household, the societies, thebusinesses and I appreciate the
work they're doing.

(01:36:19):
It will bear fruit.
It's already bearing fruit andI think I trust when you say
that when the legislationapplies, you will stick behind
them, because you've been doingit throughout the legislation.

Glen (01:36:31):
Yeah, we have to, and I think that once the rest of
society starts to step up andsee how important this is,
because persons withdisabilities is the largest
minority group, because it'sacross all sectors, of course,
all you know, as they say, it'sabout this.

(01:36:53):
Like this disability, don'tdiscriminate.

Corie (01:36:55):
yeah, of course we see it , we see it and, as you say, who
feels it knows when you put init.
You went and learn about it.
So I feel like the only way forus to advance is really for all
of us to feel it.
It's just one society and if wecontinue to treat any part of
the society as hush-hush oroutcast or not, have the
conversation, the thing thatstarts with conversation.

(01:37:15):
So that's why, again, when youask me how I decide is national
impact, and I want to invite youto keep this as a running
conversation, this space alwaysopen for you, because I would
love for us to come back hereand talk one day and say, boy,
all the legislation passed thischange.
Everybody in schools, theteachers well prepped, the
buildings are in place, thecorporate world knows what it is
and so on.
And I always looking for I wantupdates on terry snow too.

(01:37:37):
You said he's at.
He's at detour now, is he okay?

Glen (01:37:39):
yes, he's at detour now.
I hope he gets promoted,because then Maula was killing
him.
He got accustomed to when hewasn't working because after
Aeropost you know the pandemiche got COVID, so he was out of
it for a while.
So he got accustomed to beingat home playing games, watching

(01:38:00):
movies, watching Netflix,watching sports.
You're sure, right the goodlife.
So you'll stay up until late inthe night because then he can
wake up late the next day.
Make his own breakfast, do hisown thing, but now he's a
working man again, so sometimesI'll be, I'm sleeping, I'm here,
I need television on, get up.
And he's fast asleep.

(01:38:20):
Yeah, and the television is onbecause he can't stay up how he
used to yeah, man working hardyeah, because he's working hard,
really deep, you know so thewell transition.
So I'm hoping he eventuallygets promoted and go to some 8
to 4 or something.

Corie (01:38:36):
Yeah yeah, that's good man, continue to do what you're
doing and, as I say, there's athere's an open space.
But I'd ask you, before you goabout, where funding is
concerned, you were saying thatyou don't get government
subventions now.
So, in terms of funding yourefforts, how are you doing that?

Glen (01:38:53):
Well, we actually approach corporate TNT and the
government of Trinidad and.
Tobago to fund the board iscompletely.
We're all volunteers so wedon't get paid.
So everything that we get weare the board is completely.
We are all volunteers, so wedon't get paid, Right, Right.
So everything that we get goesinto the work that the network
does.
Okay, good, you know we don'thave any staff that we pay, but
besides, like the accountant andall the staff, Of course you

(01:39:13):
have to pay them yeah.

Corie (01:39:15):
You have to pay them to make sure you're compliant so
anybody interested in thingslike that, in terms of
contributing, can reach out toyou across all your socials,
right?

Glen (01:39:25):
yes, we can.
And then it's not onlyfinancial contribution, because
you know, a lot of people feelyou know, for any time they hear
you have an interview, theyfeel just running at them your
palm out, right.
We also need, like technicalsupport and even volunteers, and
for you to just go pages,comment on our posts, like our
posts, like the posts, share itor tell us what you think we

(01:39:48):
could do better and come andhelp us do it, because a lot of
people come with ideas, right,but we want people to help us
implement the ideas, because wehave a lot of ideas too, but we
do have the hands to be able toand there are a lot of very
skilled people.
As I said, it's amazing thequality of people we have in

(01:40:09):
Trinidad and Tobago right now,Right Over the years since we
were just completely all theassistance we've gotten with
regard to tertiary education.
So we have so many more people,you know, with bachelors and
masters and PhDs, and yetsociety is in a worse off

(01:40:30):
position than it was years ago.

Corie (01:40:33):
Sometimes it's too much brains, not enough hands.
There you go.
So just give me a social againone more time before you go.
Yeah, so Down.

Glen (01:40:41):
Syndrome Family Network DS Family Network on Instagram.
Shows again one more timebefore yeah, so down syndrome
family network ds family networkon instagram, facebook um
linkedin okay good yes andtiktok.
So look for us.
Um, you can also google me,glenn niles, we are also on
youtube, yeah, I forget.
And we, we are looking to pushit a little further.

(01:41:06):
You know, getting more youngerhands on board to help us with
that whole social media push.

Corie (01:41:13):
Well, what I'll do, I'll include, once I do, the
description.
I'll include all the handlesand everything there, so anybody
who wants to get in contactwith Glenn on the network could
get in contact.
But, thanks bro, I learn on thenet so we could get in contact.
But, thanks bro, I appreciateyou coming on.
Thank you very much.
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Episode 234 | Glen Niles

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.css-14f5ked{margin:0;word-break:break-word;display:-webkit-box;-webkit-box-orient:vertical;box-orient:vertical;-webkit-line-clamp:2;overflow:hidden;}Episode 234 | Glen Niles