Latest / Corie Sheppard Podcast / Episode 234 | Glen Niles

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Episode 234 | Glen Niles · Corie Sheppard Podcast

• 0:17
  Corie: All right, folks.
• 0:17
  Corie: I have with me today Mr Glenn Niles, president of the Dong Syndrome family network.
• 0:22
  Corie: How are you going, sir?
• 0:23
  Glen: I'm good, I'm good, I'm glad to be here, man.
• 0:24
  Glen: I don't know if I could fill the shoes of the peopleung syndrome family network.
• 0:24
  Glen: How are you going, sir?
• 0:25
  Glen: I'm good, I'm good, I'm I'm glad to be here, man.
• 0:26
  Corie: I don't know if I could fill the shoes of the people who came here before you're here to fill them shoes, yeah, yeah, yeah, yeah, I don't tell people that I know glenn for a long, long time, just knowing you in and 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.
• 0:40
  Corie: But the images people see it now you versus me, that I don't know what I was doing in the gym versus what you was doing in the gym.
• 0:47
  Corie: But you've been around.
• 0:50
  Corie: We heard it, trainer, right, you've been around for a long time, yeah boy too long.
• 0:54
  Corie: I don't want to let everybody know my age we go do some guessing over the course of this episode.
• 0:59
  Corie: You go, you play together, but that's something I've been seeing you doing for a long circular gym for some time now and it's one of the people who you'll see a little bit of mysteriousness about you know.
• 1:09
  Corie: See, you're wrongly, jimmy, don't talk much.
• 1:11
  Corie: You're dealing with your clients, very, very focused on them.
• 1:14
  Corie: So I was surprised.
• 1:15
  Corie: The other day I came and you tell me it's like how do you decide who come in next?
• 1:19
  Corie: On the podcast there's a question of starting to get more and more and my answer to you was well, national impact.
• 1:24
  Corie: And then you told me what you do and so on.
• 1:27
  Corie: And I remember seeing you in papers one day.
• 1:29
  Corie: I remember seeing it.
• 1:30
  Corie: That was the first time I said, okay, there's ways, and there's ways to do.
• 1:33
  Corie: So.
• 1:34
  Corie: I'd ask you, like you, getting into the network or starting the network, what was the impetus for it?
• 1:40
  Corie: How did you get?
• 1:41
  Glen: into that.
• 1:42
  Glen: Well, starting our network really was because of my son.
• 1:45
  Glen: You know my son was born with Down syndrome.
• 1:47
  Glen: I didn't know anything about Down syndrome.
• 1:51
  Glen: You know we were a young couple and I remember distinctly when my wife was pregnant and we went by the doctor.
• 1:58
  Glen: You know we read in this book what to expect when you're expecting.
• 2:02
  Corie: Of course, all of us would be right, you know so we talk about um doing an amniocentesis.
• 2:08
  Glen: Well, this now my son is 26 years, so this is way back in time.
• 2:12
  Glen: People, now they're not even doing that because they have a blood test for the first trimester and you'll know what's like what's going on you know.
• 2:19
  Glen: So we asked the doctor where is this amniocentesis?
• 2:22
  Glen: What's that about?
• 2:22
  Glen: He that's to check the amniotic fluid and see if the child has Down syndrome.
• 2:27
  Glen: But all you do have to worry about that, all you young.
• 2:30
  Corie: This is what the doctor said.
• 2:30
  Glen: Yeah, that's what he said.
• 2:31
  Glen: So he's like oh okay, right, you don't have to worry about that.
• 2:36
  Glen: So you're doing everything you know right exercises, taking the necessary vitamins, everything perfect diet.
• 2:43
  Glen: And then when my son was born, I was in the room, you know so, between the pain and my wife crushing my hand, I'm watching her say but this baby looking different.
• 2:56
  Glen: So there's something wrong, you know when he was born, I said there's something wrong.
• 2:59
  Glen: Right, I didn't tell her anything, you know, but that just we on my mind.
• 3:04
  Glen: You know, back then I didn't have no cell phone, so when I went home I couldn't even sleep properly.
• 3:09
  Glen: Next morning, you know, she called and she said that the doctor wanted to talk to us.
• 3:15
  Glen: So I don't know if the doctor was going to tell us something about the baby, because that baby just wasn't looking right and this was in general.
• 3:22
  Glen: No, this was in San fernando, okay, southern medical at the time.
• 3:27
  Glen: So I went down and he said that the baby has down syndrome.
• 3:33
  Glen: So I, I trip, I wasn't talking, the whole room just went red and I just watching this man, like I just run up his chest and run, continue running all over him, literally, you know, because I remember we asked him if we had to do the test.
• 3:50
  Glen: Yes, of course, and he said no, you know.
• 3:53
  Glen: So he really apologized and all kinds of things.
• 3:55
  Glen: I wasn't talking.
• 3:56
  Glen: He asked him a question and I was just looking at him and my wife was just trying to calm me down.
• 3:59
  Glen: You know I didn't talk again for the rest of that interview with him.
• 4:05
  Glen: You know, and I said, well, I was saying I hope my son's healthy Ten fingers, ten toes, you know the normal things that they'll say.
• 4:15
  Glen: I said I didn't factor in Down syndrome or any other form of disability, Right?
• 4:21
  Glen: So I said, well, that's how it is.
• 4:24
  Glen: And then I started thinking about, okay, well, what is this down syndrome thing and what scores it right?
• 4:31
  Glen: because I mean I've seen people with down syndrome before and the people I've seen wasn't really doing anything I see, they're overweight, they're sticking out their tongue, they're making noises, they, they currently talk, you know, speak properly or anything.
• 4:46
  Glen: So you know all of that on my mind.
• 4:48
  Glen: I see, without this one, my son, this is what gonna happen to my son so now that you're experiencing it is when you're really learning about what it is yes, now I'm trying to find out what it is.
• 4:57
  Glen: You know, google became a friend, you know, and and then I started align myself with other organizations.
• 5:06
  Glen: But back then the next shocker was in two days, when he had to do just a checkup by a pediatrician, right, and the pediatrician listened to his heart.
• 5:17
  Glen: Pause.
• 5:19
  Glen: He went back to his heart again.
• 5:21
  Glen: He check everything else.
• 5:23
  Glen: He going back to his heart again, so I checked everything else.
• 5:24
  Glen: He's going back to his heart again.
• 5:26
  Glen: So I'm watching him out.
• 5:27
  Glen: You know what it is.
• 5:28
  Glen: Well, one moment.
• 5:30
  Glen: And he's checking, and he's checking, and he's checking.
• 5:33
  Glen: And you know, my blood pressure started to raise again one time because I was like, oh, come on, man, he's done.
• 5:38
  Glen: Born-to-die syndrome.
• 5:39
  Corie: What next next?
• 5:40
  Glen: you know.
• 5:41
  Glen: So I just jump up the the the back of my leg, said the chair, the chair fly across the room and I hold on to his desk, you know, and I kind of push the desk towards him because I tell her, so vexed, I said, just tell us, just tell us, waiters, just tell us right.
• 5:57
  Glen: And then he say he, he had an echo.
• 6:00
  Glen: So it sounded like if you have a couple holes in his heart, you're like I want a Down syndrome.
• 6:06
  Glen: When I started to tell myself, okay, well, he'll be a special Olympian, but now we have holes in his heart so he's not going to live.
• 6:14
  Glen: So he passed on to a pediatric cardiologist, dr Diane Alexander, and we went to see her.
• 6:23
  Glen: She did all the tests to confirm what he was saying.
• 6:27
  Glen: And that's when I went into a real dark place.
• 6:30
  Glen: Right, yeah, like, seriously, I was like, but what does I do?
• 6:36
  Corie: And this is.
• 6:36
  Corie: He's still a newborn at this point, right.
• 6:38
  Glen: Yeah, he's still a newborn.
• 6:39
  Glen: You know what does I do?
• 6:41
  Corie: Yeah.
• 6:42
  Glen: You know, to deserve this.
• 6:43
  Glen: All the time we're waiting, you know, to get our first child after marriage and now he's born and he has Down syndrome.
• 6:50
  Glen: Plus he has, you know, congenital heart disease.
• 6:54
  Glen: Start to think about it.
• 6:56
  Glen: I start watching my father as hard as you do.
• 6:58
  Glen: Back then I start studying everything that I do.
• 7:01
  Glen: You know they all say since the father, what can I do with?
• 7:05
  Corie: my family, because I don't know what causing it?
• 7:07
  Corie: Of course.
• 7:08
  Corie: I guess at that point in time you do have a lot of information about it.
• 7:12
  Corie: We're not in a society where we talk about things openly, as that you know it's a secret, and especially back then.
• 7:18
  Glen: You know, back then it was still in the real mode of people hiding children with disabilities.
• 7:24
  Glen: Right, you know, they're not really bringing them out because they are shamed, they don't know how society will look at them, and all of that.
• 7:29
  Glen: So that that was fully.
• 7:32
  Glen: I mean it's still like that now, but back then it was fully, fully entrenched, of course you know.
• 7:36
  Glen: So the next step was he had to have opened that surgery or he would have died Obviously to have opened that surgery or he would have died.
• 7:46
  Glen: Obviously we don't have the money for that.
• 7:47
  Glen: And you know, in talking to dr alexander they said our team of doctors has come down.
• 7:49
  Glen: You know, back then, as I said this, like 26 years ago, but the waiting list is very long.
• 7:55
  Glen: So you know, the the picture start looking dimmer and dimmer to me.
• 7:59
  Glen: You know we don't have the money, the waiting list long.
• 8:02
  Glen: Well, like my son will die.
• 8:06
  Glen: So I was talking to a friend about it and she attended Howard University she's dead now, you know, god rest her soul and Michelle Kato, and she told me that she'll contact some of her peers because she's a physiotherapist.
• 8:23
  Glen: So you know other people in her cohort who have been doctors, nurses.
• 8:24
  Glen: She'll contact some of her peers because she's a physiotherapist, so you know other people in her court who have been doctors, nurses, thing.
• 8:27
  Glen: She'll contact some of them and find out.
• 8:29
  Glen: And when she contacted them they told her about rotary international had a gift of life program and they take on cases like this.
• 8:40
  Glen: You know I was like okay, I got the information for them and we contacted them and they responded they asked for all his test results.
• 8:50
  Glen: So you know we went to dr alexander and prepared all the results back then put it on a vhs tape yeah, that's the hero yeah, put it on a vhs tape.
• 9:00
  Glen: No, no, no dvd or blu-ray or no flash drive, you know, I mean, and we sent it by registered mail up to them and they they took the case right.
• 9:14
  Glen: So they had to wait until he was five months old so he'd be strong enough to go under the general anesthesia.
• 9:21
  Glen: So from the time he was born he was very, he was actually very robust, oh, but in that five months man almost shrank away to nothing.
• 9:30
  Corie: 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.
• 9:35
  Glen: Exactly, I'm just watching him getting smaller and smaller.
• 9:37
  Glen: You know, operation was a success.
• 9:41
  Glen: I had to say thank you to those Rotarians man, they don't know me, we're on this small island down in the Caribbean and one of them kept my wife and son in their home for months prior to the surgery and after, and another one paid for everything you know.
• 10:02
  Glen: So he made sure after we went back up on vacation and went and visited them to show them.
• 10:08
  Glen: Hey, this is my analysis.
• 10:10
  Corie: They must be too happy to see what he's become.
• 10:13
  Glen: You understand Mm-hmm.
• 10:14
  Corie: Yeah, so after that now, yeah that was his start, mm-hmm.
• 10:19
  Corie: But then, in still trying to learn about this thing, one thing I know is that it wasn't my fault, because you know I was thinking it's my fault.
• 10:29
  Corie: Yeah, I want to talk about that some more, because the thing is like when you find out you're gonna and this is your first child yeah, when you find out you're gonna be a father, as as men, you have these dreams of being the next ronaldo, the next messi.
• 10:39
  Corie: I've always known you to be a very fit man, so I would imagine that you're thinking the same things.
• 10:44
  Corie: You want him to be bright, you want him to be sporty and all that.
• 10:46
  Corie: You have all that going in all the way through the pregnancy with you.
• 10:50
  Glen: Yes, all of all of that all.
• 10:51
  Glen: But listen, my, my father didn't really put me in the sport, put me in into any sport at all, any kind of fitness.
• 11:00
  Glen: So I was a wimp growing up.
• 11:01
  Glen: I was bullied in school.
• 11:01
  Glen: Yeah, I couldn't fight, I couldn't do anything, literally, you know.
• 11:03
  Glen: So I was a wimp growing up.
• 11:03
  Glen: I was bullied in school.
• 11:04
  Glen: Yeah, I couldn't fight, I couldn't do anything, literally, you know.
• 11:06
  Glen: So I was like a little outcast in school.
• 11:08
  Glen: When I see my schoolmates now, you know, like from primary school or secondary school, like 50 years after, they can't believe I look how I look now.
• 11:19
  Glen: Remember this skinny little black fella and looking at me now I'm taller than them, are bigger than a lot of them and are fitter than a lot of them, you know.
• 11:29
  Glen: But back then, yeah, I wasn't into any sport.
• 11:32
  Glen: So you know, I was telling myself my son everything will be different for him.
• 11:36
  Glen: I am going to let him try everything, see which one he likes, right, things like that.
• 11:41
  Glen: So I had real plans.
• 11:42
  Glen: Of course, of course the universe or god had their own plans.
• 11:46
  Corie: Yeah, and finding out that news, because I was reading that there is they have the pre-nasal test to find out your doctor talk you out of that.
• 11:53
  Corie: He basically basing it on the fact that you fit, which have nothing to do with nothing which has absolutely nothing.
• 11:58
  Glen: He said that we were young.
• 11:59
  Glen: The average age of a woman given birth to a child with Down syndrome is 21.
• 12:06
  Glen: And that's because more women at that age give birth to children.
• 12:09
  Glen: You know, they say the risk increases when the person is older, but that is not a factor either, because I personally know three friends who had children at 45 and they were born with no issues whatsoever no down syndrome, no autism, no cerebral palsy, nothing.
• 12:30
  Glen: You know their children are adults, now unhealthy, you know.
• 12:35
  Glen: So it just happens.
• 12:37
  Glen: Yeah, yeah, right.
• 12:38
  Glen: Um, harvard medical school.
• 12:41
  Glen: You know I remember years ago they were spending millions trying to figure out what causes this 21st chromosome to split, why.
• 12:50
  Glen: You know, and I used to be thinking well, along with a lot of other people, that why are you spending millions trying to figure out how to stop Down syndrome instead of using our same millions to help take care of the people born with Down syndrome?
• 13:05
  Corie: Yeah, because your reality is now that we're here.
• 13:06
  Corie: Yeah.
• 13:08
  Glen: We're here already, so what are you going to do?
• 13:10
  Glen: You can't call them like what they used to do in some European countries.
• 13:16
  Corie: Of course, of course.
• 13:16
  Glen: Back in the day when I hear some kind of horror stories where they actually used to they would not like if they have like my son, they have a heart disease.
• 13:26
  Glen: They would not give them the surgery Because, as far as they're concerned, they're not going to be give any meaningful contribution to society.
• 13:36
  Glen: So they basically used to let them live for however long they live.
• 13:40
  Corie: Yeah, abandoned, basically yeah, yeah, almost abandoned.
• 13:43
  Glen: Yeah, if they live, well, fine.
• 13:44
  Glen: If they don't, well, there wouldn't have been any eustache on him.
• 13:48
  Glen: Anyways, that's their thinking, you know.
• 13:50
  Glen: But now that has changed.
• 13:53
  Glen: So if you Google some sites, you'll still see them saying the average age of a person with Down syndrome is 25.
• 14:02
  Glen: And that's real archaic.
• 14:04
  Glen: And if you Google the sites, that of the organizations that are advocating for human rights or personal disabilities and things, you'll see the average age is 60.
• 14:15
  Glen: So they would live on their parents.
• 14:19
  Glen: No, so a whole different change, and I feel that change is due to the fact that they're getting medical attention, because a lot of countries have legislation that will protect them, of course, and instead of just leaving them as before.
• 14:34
  Glen: So in me starting to learn all of this, I came upon the national down syndrome congress, uh, based in the?
• 14:42
  Glen: U Atlanta.
• 14:43
  Glen: The National Down Syndrome Society that's based in New York, down Syndrome International in the UK, canada Down Syndrome Society.
• 14:52
  Glen: So I started to follow those sites because they had a lot more information on it.
• 14:57
  Glen: I mean, if you, if a parent in Trinidad child is born with Down Syndrome and they write to the National Down Syndrome Society in New York, they send them a package, all the information you need to know about your newborn.
• 15:12
  Glen: Imagine that they send them a package here to Trinidad for free.
• 15:15
  Corie: Yeah, okay.
• 15:16
  Glen: Yeah, I thought you meant within the US.
• 15:18
  Corie: So if you write, to them.
• 15:19
  Glen: I see, yeah, you write to them, they send them a package.
• 15:22
  Glen: You know so, the National Down Syndrome Congress, they have an annual conference.
• 15:28
  Glen: So I say I want to attend this conference.
• 15:33
  Glen: So I attended the conference and that's what changed my entire life, literally.
• 15:40
  Glen: That was the catalyst, you know.
• 15:42
  Glen: I remember it was in Boston.
• 15:44
  Glen: I think it was either 2008, 2007.
• 15:49
  Glen: And when I walk into the hotel it's a huge hotel.
• 15:51
  Glen: I didn't know that conference was so big.
• 15:53
  Glen: You know, coming from Trinidad, you think yeah, yeah in conference it must be a little thing.
• 15:57
  Glen: About 300 people, like about 3,000 people, yeah, and people from all over the US and even international internationals, right, but what hit me is when I stand up in the lobby, I never see so many people with Down Syndrome in my life.
• 16:12
  Glen: That's one.
• 16:13
  Glen: Two I'm watching parents walking with their kids or young adults, and these young adults, they're not holding their hands for anything.
• 16:26
  Glen: They're walking on their own, are watching their dress, their manner, the different personalities I'm like, but they're looking like any other average young teenager or young adult, and that's exactly the experience in yeah I, I was looking to see.
• 16:44
  Glen: I saw that overweight people walking.
• 16:46
  Glen: They can't walk properly.
• 16:47
  Glen: Parents had to hold their hands, you know well into the until they get old until they die, and that wasn't what I was seeing.
• 16:55
  Glen: I watched men with long hair airing in theirs.
• 16:58
  Glen: Well, back then was the baggy pants.
• 17:01
  Glen: Of course, the pants look like it made made from cloth.
• 17:05
  Glen: That could probably make about three pairs of pants, you know, hanging off.
• 17:09
  Corie: Same way yeah.
• 17:11
  Glen: The shirts are all big and they have on a baseball cap turned backwards or forward, but then you'll see the others who dressed in polo shirt and jeans tucked into their pants with their belt.
• 17:21
  Glen: You'll see a scene where they mix into their pants with their belt, you know, so you're seeing all the mix Some of the girls have on business suits, some of them in miniskirt, with boots and these are girls with donkeys.
• 17:29
  Corie: It's just society.
• 17:30
  Corie: You see no reflection?
• 17:31
  Glen: Yeah, so I just I was in shock, right, you know, coming from Trinidad and looking at this.
• 17:37
  Glen: But and the parents hand them the keys, the room keys, and say don't forget, we're meeting at so-and-so time for dinner.
• 17:45
  Corie: So you're like independent, I'm like well they're going, where they going.
• 17:51
  Glen: I follow a group of them outside to see where they're going because I tell you, it's just not the experience we have here.
• 17:56
  Glen: It is not, it is not, so for me that was mind blowing, blowing.
• 18:00
  Corie: How old your son is at this time, then what was he born?
• 18:03
  Glen: in 1998.
• 18:07
  Glen: You got that much.
• 18:09
  Corie: I don't know.
• 18:09
  Corie: Yeah, so that was like 2007.
• 18:13
  Glen: Yes, he could be about nine.
• 18:14
  Glen: Yeah, so I took him with me and you know, I'm just watching him and watching these people.
• 18:20
  Glen: So you, these people, so you know, my whole vision of the future, of his future, changed, of course, in that instant, because I'm like this all of them are Down syndrome.
• 18:32
  Glen: He has Down syndrome.
• 18:34
  Glen: There's not no different kind of Down syndrome.
• 18:36
  Glen: Yeah, yeah, yeah, so he could be just like them, of course.
• 18:41
  Glen: And that's why I start thinking, you know, and then, in going to the sessions and speaking to the lecturers, the presenters and the after, and hearing all the things that we could do as parents, I think the most important thing is early intervention.
• 18:59
  Corie: Yeah, do it Right.
• 19:00
  Glen: You know, they say the first five years is the formative years.
• 19:03
  Glen: That's why we could remember every nursery rhyme.
• 19:05
  Glen: If you ask me about pythagoras, do you and I in some trouble that, yeah, you should have teached me that at four or five years old you understand, but as a parent the thing is like.
• 19:14
  Corie: I ask you, what gives you that drive and impetus?
• 19:16
  Corie: Because, at the risk of something completely ignorant, I can't imagine getting that news in the room.
• 19:21
  Corie: I appreciate you talking about your reaction to it, but I imagine that I would be feeling well blame, regret.
• 19:29
  Corie: I would have studied all the things I do woman in my life and I say, boy, this is my punishment for this thing.
• 19:33
  Corie: Now I would be studying the shame that you know.
• 19:36
  Corie: How do I tell family and tell people?
• 19:38
  Corie: Because trinidad is a funny place when it comes to people and everybody expecting good news and people calling you, and now you had to tell that story over and over and over with family, that calling and them kind of things.
• 19:49
  Corie: So you would have gone through all those things like that, that cycle of emotion.
• 19:53
  Glen: Yeah, I did, I did, and you know what carried me through Anger.
• 19:57
  Corie: Yeah.
• 19:58
  Glen: Bad mind, bad man, just anger, just pure anger.
• 20:08
  Glen: Is angry with everybody, as angry and and jealous of the people who had the so-called perfect child, you know, with no disabilities, and when they're not giving that child all that they could, I was even more angry with them.
• 20:16
  Glen: So some of my friends, you know they wouldn't even know why I kind of ostracize them, but it it's because of that, you know I'm like look at your child, man, you don't know easy habits.
• 20:27
  Glen: Exactly and you're not putting in the effort, you're not being the father that you should be to that child or the mother that you should be to that child, and they would never understand if I tried to explain it to them, because there's another child, like Tyrese, you know, and because I didn't have a child like Tyrese, you know.
• 20:45
  Glen: So it's that anger that pushed me, that anger that made me invest and go on that conference and meet people and meet parents and get their stories and then come back and say, nah, because I'm always kind of solutions-oriented.
• 20:59
  Glen: You tell me a problem, I start to wrap my mind around it and how we could fix this.
• 21:04
  Glen: I don't focus on the problem at mind around it and how we could fix this right.
• 21:06
  Glen: I don't focus on the problem at all.
• 21:07
  Glen: I focus how we could fix this, the solution and I use that even as a coach.
• 21:11
  Glen: Now, you know, people come up with all kind of excuses why they're not fit, why they're not going to the gym, and for a time they call.
• 21:17
  Glen: I'll keep shooting down all the excuses until they realize, yeah, I could do better.
• 21:21
  Glen: So it's the same thing.
• 21:23
  Glen: But the thing is I can fix my son.
• 21:25
  Glen: So I was thinking, okay, if I can't fix him, what we could do to make his life like those young adults' lives that we see in the US, but even the decision to go to the conference at all, or even do the reading.
• 21:45
  Corie: I put myself in this position again and I might just reside myself to.
• 21:49
  Corie: This is what it is.
• 21:50
  Corie: I had to take care of him for the rest of my life.
• 21:51
  Corie: I might still need to leave too, just run for the hills, you know.
• 21:54
  Corie: But you take a different approach to it.
• 21:57
  Corie: You do a deep dive.
• 21:59
  Glen: Total total different.
• 22:00
  Glen: I told my wife to leave.
• 22:01
  Glen: You know she wanted to kill me, right.
• 22:05
  Glen: But your woman go through nine months and have a child.
• 22:10
  Glen: I say, listen, just leave that child with me.
• 22:12
  Glen: You could go.
• 22:13
  Glen: Go and marry somebody else and have a perfect baby, you know, and that didn't go down very well.
• 22:20
  Glen: I would imagine yeah, you know, but I I didn't think about you on our way because I was still thinking, you know, as I caused this, I had to fix it, kind of thing.
• 22:32
  Glen: That was.
• 22:32
  Glen: That was just my mentality I caused this, I had to fix it.
• 22:35
  Glen: And so when I came back from that conference, I tried to engage with other people, other parents, parents, and I'm telling them, I always tell people, coming back, I was like Robinson, damn Christopher Columbus, you know and telling everybody the world is not flat, yeah, it's a new world, yeah, if you keep sailing.
• 22:58
  Glen: That's how I felt, telling people listen, our children could go to school, they could be educated, they could be educated, they could get jobs, they could live independently.
• 23:08
  Glen: And everybody watching me, like Glenn, finally loses, finally trip off.
• 23:13
  Glen: Our children are down and get the best of it.
• 23:15
  Corie: Yeah, so at that time, locally you have a lot of networks, like you're in touch with a lot of parents who would be dealing with the same thing and that kind of thing.
• 23:21
  Corie: Do you have any place where you could go, similar to the conference?
• 23:24
  Glen: No, I didn't have, and that's why, in trying to get in touch with people and never forget this, dr Natalie Dick, a developmental specialist at Mount Hope.
• 23:39
  Glen: She sent out an invite and I'm not sure if she was doing research, if she was working on some people or something back then and requesting parents of children with disabilities to come to her office, and she was interviewing us and every time I went I would take the names of everybody who was there.
• 24:03
  Corie: So when I went the second time I would take the names of everybody who was there.
• 24:05
  Glen: So when I went the second time I met different people, and the third time I met different people.
• 24:09
  Glen: I just started contacting them and staying in touch with them.
• 24:15
  Glen: And that's work, yeah, and that's how I finally met, like about five other parents, and I said, hey, we could do what they're doing in the States, because all those, a lot of the organizations in the US, are formed by parents.
• 24:30
  Glen: So I said, hey, we could do that.
• 24:32
  Glen: You know, let's come together and form.
• 24:36
  Glen: So we banded about, just as I said what we'll call it.
• 24:40
  Glen: Say well, it's about Down syndrome, so we'll say it.
• 24:45
  Glen: Say well, it's about down syndrome, so we'll say down syndrome, and we, we throw, you know, throw around different names until we came up with the family and he says all about the families coming together and working together for their kids, you know.
• 24:57
  Glen: So, down syndrome, family network storm, and that was in 2011.
• 25:02
  Glen: So we went, we registered it in august 2011 and then everything like it hit, hit the bricks right, because every time we're planning, okay, let's launch it.
• 25:15
  Glen: I had a different vision in mind, you know, for the launch.
• 25:21
  Glen: I was like, if we launch in this, at that time I was brand new, just came to trinidad.
• 25:26
  Glen: I said we launch on this had to be at the height of the hilton and they watch the division.
• 25:31
  Corie: You see what they watch me like about a madman.
• 25:34
  Glen: I say yeah.
• 25:35
  Glen: I say we, we had a launch, we had to make an impact from the get-go.
• 25:39
  Glen: I say we can't launch a new school and no back room.
• 25:44
  Glen: We can't do that.
• 25:45
  Glen: So of course, the launch didn't happen.
• 25:49
  Glen: And then in September, the United Nations proclaimed the 21st of March as World Down Syndrome Day, because the 21st that splits three ways.
• 26:01
  Glen: So they used the 21st of March and the first time it was being celebrated would have use the 21st of march and the first time it will have been celebrated will have been the 21st of march 2012 all right, so you're done mobilizing, so we say, right, we'll launch it on that day.
• 26:16
  Glen: So it will come out to the anniversary of world down syndrome day, right every year.
• 26:21
  Glen: And we got it to come off.
• 26:23
  Glen: Oh, that's good.
• 26:24
  Glen: And that was the birth and we launched at the Hyatt.
• 26:27
  Corie: Oh good, congrats, Congrats again.
• 26:28
  Corie: We launched at the Hyatt.
• 26:31
  Glen: The president was there, dr Richard, so that was cool.
• 26:35
  Glen: Oh, beautiful, beautiful.
• 26:37
  Corie: Like, with some of these things you're saying, it sounds surreal because again you're wondering if you get that news from a doctor and that's it.
• 26:45
  Corie: You're talking about an international organization who's sending a package.
• 26:48
  Corie: There's no local support like that you.
• 26:50
  Corie: You find out that from your doctor and then you're on your own, you deal with your anger.
• 26:53
  Glen: There's no support they had um at the time.
• 26:56
  Glen: They are the national association for down syndrome, based in sundance.
• 26:59
  Glen: So, of course, when I heard about it, I I got excited, you know, because I'm thinking it's something like what, like the organizations I'm in touch with internationally?
• 27:09
  Corie: Oh, by that time you're already in touch with them.
• 27:10
  Corie: Yeah, Okay.
• 27:12
  Glen: I understand, because I couldn't find anything locally, you know, until somebody told me about it.
• 27:17
  Glen: So I went to visit them, but it wasn't what I thought it would be.
• 27:21
  Glen: It was just like a school.
• 27:22
  Glen: You know, I'm sitting and I'm looking at the kids here and I'm saying, no, nah, this is not going to create the future that I've seen when I went to that conference, because we only have persons with disabilities in one area and they have nothing to to learn from, nobody to emulate, because all of them have disabilities, so all they will do is learn different traits from each other.
• 27:54
  Corie: You know, so you think it feeds into the kind of outcast mentality we have towards those things in our society yeah, well, it definitely does, because that ties all these society things right.
• 28:03
  Glen: When you're different, it does it.
• 28:04
  Glen: You're's how the society thinks.
• 28:05
  Glen: Right, when you're different, that's it.
• 28:05
  Glen: You're literally on the outside.
• 28:07
  Glen: You don't fit in, you know.
• 28:09
  Glen: So that's exactly what they do, along with, of course, the compassion and the sympathy that people feel for you when you know you have a child with a disability, and they feel sorry for you yeah literally sorry for you.
• 28:25
  Glen: Yeah, literally sorry for you.
• 28:26
  Glen: They pity you and, of course, as I said, I was just so.
• 28:32
  Glen: Even my friends, they probably meant well, but coming and telling me that they're so sorry that my son was born with Down syndrome, I said he does not have cancer.
• 28:46
  Glen: Yeah, it's not like a loss, yeah, it's not a disease.
• 28:50
  Glen: You know, someone would say gosh boy, sorry, your son's suffering with Down syndrome.
• 28:53
  Glen: He's not suffering.
• 28:54
  Glen: You know it's a condition, a genetic condition.
• 28:58
  Glen: You know it's not a disease.
• 29:00
  Glen: And I keep telling people that over and over, but they were, just like me, ignorant.
• 29:06
  Glen: They don't know.
• 29:07
  Glen: Some people right now don't know the difference between down syndrome and autism.
• 29:12
  Corie: 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 the differences.
• 29:21
  Corie: But there's no, well, definitely not teaching it in the school system.
• 29:25
  Corie: There's no sensitization to it, not at my time, I guess.
• 29:28
  Corie: No, youths, no different.
• 29:30
  Corie: They are the answers to all these, any issue.
• 29:32
  Corie: I feel youth have a better chance than us, but yeah, there's no competition.
• 29:35
  Glen: The answers, that's the some of them don't know how to use it properly so it's almost like that.
• 29:42
  Corie: That outcasting perpetuates it.
• 29:44
  Corie: It'll go on and on.
• 29:45
  Corie: But that drive you found to build it you were doing advocacy or anything like that before.
• 29:51
  Corie: Everything is brand new to you here.
• 29:53
  Glen: No, everything was brand new to me, even when I formed the network and we sat down who will be chairman?
• 30:02
  Glen: And everybody's looking around the kind of person as I.
• 30:07
  Glen: I say I'm a fixer, but as always, a behind the scenes fixer, right never, never up front.
• 30:13
  Glen: Yeah, I'm never up front in anything, you know.
• 30:15
  Glen: That's from since, as I said, you know going to school and, and you know never being at the forefront of everything.
• 30:21
  Glen: So I, I will be work behind the scenes, I'll make you look real good, nobody needs to know it was me, but I want to see an effect, you know.
• 30:30
  Glen: So I'm, I'm pinpointing everybody as this one or two degrees, this one, I think it could know it should be you, it should be you.
• 30:38
  Glen: Now, all of them are women, you know, and I was the only man on the board.
• 30:43
  Glen: So everybody said no, they don't want to be.
• 30:47
  Glen: So I, I had to be the one to be chairman.
• 30:50
  Glen: So no, there's me angry again.
• 30:53
  Glen: You know why.
• 30:55
  Glen: Why I was pushed into the forefront, you know to, to have to do this.
• 30:59
  Glen: But then again, I guess it's because, you know, as I say, we really think we're in control of our path, you know, and we could do whatever we want to believe we're in control, but somehow like we're really not in control, you know.
• 31:20
  Glen: You know because when I think back on how everything happened and what took me to the point of starting a network, and where the network is now is almost like it was destiny, you know, because, when I think back, if I didn't start a network, what would be happening now with regard to lobbying for the human rights of persons with disabilities and the calls for legislation and things like that, what would have been happening?
• 31:51
  Glen: Because it wasn't happening?
• 31:53
  Corie: Yeah, and you're not sure if anybody else would have stepped up Exactly.
• 31:57
  Glen: It's almost like it was destiny, but it was a difficult journey.
• 32:04
  Glen: Talking about it now, and I always feel that we're still not doing enough.
• 32:16
  Glen: Yeah, you know, even with everything that's being done now, even with we have people employed, we have people in schools and things like that, you know, it's almost like if, yeah, but we're still just barely scratching the surface, of course, of course, because the average person still thinks that persons with Down syndrome or disabilities- have no value, yeah, and should be cast aside.
• 32:41
  Corie: If I was to say that the general idea here for people who are not experiencing it, or people who might not have a child or family member and don't know what it is, avoidance, is a strategy, I feel.
• 32:50
  Glen: Yeah, yeah, and they think it's a good thing, you know, to put them in a box.
• 32:57
  Glen: You know, regardless of how pretty the box is, Because according to the area where the box is built, you know some of them are very nice.
• 33:05
  Glen: Yeah, but the whole thing is it's still a box.
• 33:07
  Glen: I understand they are still segregated from society.
• 33:10
  Corie: I like what you say too, in terms of the diversity in our school helps.
• 33:15
  Corie: In other words, if I have people from different religious backgrounds, different races, different education levels, you don't know where my inspiration could come from or who I could take example from or who could be my friend, and the fact that we try to diversify them out means that they have a.
• 33:31
  Corie: It's limited if you're only along like people, so it's a real disadvantage to society, and I do like what you say as well.
• 33:39
  Corie: We may not see it when I say we, I mean myself too.
• 33:42
  Corie: We may not see it as okay.
• 33:44
  Corie: This is a group that could contribute, an individual that could contribute.
• 33:47
  Corie: We don't see it that way.
• 33:49
  Glen: Yeah, yeah, we don't, we don't.
• 33:51
  Glen: We see them as in some instances, we see them as almost as a threat, I guess, like how I was thinking.
• 34:02
  Glen: You know, we can't fix them?
• 34:02
  Corie: what do you do with them?
• 34:03
  Corie: Yeah, of course you know we don't want people to see them.
• 34:05
  Glen: We, a lot of families, break up.
• 34:07
  Glen: You know the the father blaming the mother, the mother blaming the father.
• 34:12
  Glen: This come from your side of the family, you know.
• 34:14
  Glen: So it's either the mother leaves or the fathers leave.
• 34:16
  Glen: Most of the time the fathers leave, so you have a lot of single mothers.
• 34:20
  Glen: You know, with children with disabilities, we have instances where families cut the mother off because she refused to drop the child off, by lady who choy or one of your places, or just leave it in the hospital and come home.
• 34:35
  Glen: Yeah, they cut them off.
• 34:37
  Glen: That's crazy.
• 34:38
  Glen: So tell you when you hear some of these stories, it's crazy.
• 34:42
  Glen: And then when I go, because I've been to several of the conferences, when I go to these conferences and I'm hanging out like literally going to a bar and liming with young adults with Down syndrome, I mean, when do you think?
• 34:56
  Corie: that's happening to happen.
• 34:57
  Corie: He doesn't want to come back home, but he doesn't want to just stay there.
• 35:00
  Glen: You know, and everybody used to say, well, why do you carry Tyrese abroad?
• 35:03
  Glen: And I used to say, well, why, when we could fix here, of course, but Tyrese Russell, high Glen, you know, especially the girls yeah, yeah, yeah.
• 35:27
  Glen: Yeah, the girls go crazy, you know, over him.
• 35:31
  Corie: Yeah, he fit like a fiddle if people was to see him.
• 35:33
  Glen: yeah, yeah the girls go crazy over him.
• 35:35
  Glen: Unfortunately, he gets spoiled.
• 35:37
  Glen: Yeah, because when he became a teenager and we went to a conference, where was that conference?
• 35:50
  Glen: Indianapolis, right?
• 35:50
  Glen: Yeah, we went to a conference in Indianapolis and what they do, as I say, it's a very large conference.
• 35:54
  Glen: On the Friday night they have a dance party Right, and on the Saturday night they have a dance party right, and on the saturday night they have a gala banquet.
• 36:00
  Glen: Oh nice with a dance after right.
• 36:02
  Glen: So from the friday night this was his first experience as an adult and for conference of that nature.
• 36:12
  Glen: They have a lot of volunteers.
• 36:13
  Glen: So they have all these university students and college students volunteering for the conference.
• 36:19
  Glen: So you know, you have all these girls who do not have down syndrome.
• 36:26
  Glen: And the difference is when they volunteer at the dance party.
• 36:32
  Glen: It is a big dance party where everybody, everybody, including the parents exactly including parents.
• 36:40
  Glen: So the parents would be off on one side and all the young people are on the dance floor.
• 36:45
  Glen: Some parents would be in groups on the dance floor too, but not with their children and so he had a ball dancing with these university students and, of course, afterwards I remember we were going to a restaurant for dinner and when he was passing there was a guy walking with about five girls you know they were going to lime and they said, yes, tyrese.
• 37:11
  Glen: And all the girls started calling out him tyrese, tyrese, tyrese.
• 37:15
  Corie: Listen.
• 37:16
  Glen: He's 26 now and he will say they want me dad, tyrese, tyrese.
• 37:22
  Glen: He never forgot that experience.
• 37:25
  Corie: Of course you know so.
• 37:27
  Glen: Afterwards, when we go back, you know he's only looking to dance With those university College students, right, even though the girls with Down syndrome Want to come and dance With them.
• 37:37
  Glen: He has.
• 37:37
  Glen: Unfortunately, girls with Down syndrome want to come and dance with him.
• 37:39
  Glen: Now he has unfortunately become a Down syndrome snob.
• 37:43
  Corie: Right, he knows you're saying this, walter.
• 37:45
  Glen: He broke my heart.
• 37:46
  Glen: I'm telling you he broke my heart.
• 37:49
  Glen: I'm ready to set him up, you know, because I was thinking, you know, if he gets married he can move to the US.
• 37:55
  Glen: Yeah, yeah.
• 37:57
  Corie: He has other plans.
• 37:59
  Glen: He has other plans.
• 37:59
  Corie: It's like what's ours.
• 38:00
  Glen: Like I like him already yeah, boy, and yeah, that's it.
• 38:04
  Glen: I can't tell him who to like, right, you know, of course.
• 38:06
  Glen: 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, you know.
• 38:21
  Glen: So she went to junior, went to high school.
• 38:24
  Glen: When she graduated from high school, see if you could guess what she got as a present her graduation present from high school at 17 years old.
• 38:33
  Corie: At 17?
• 38:34
  Corie: .
• 38:34
  Corie: I could tell you what I would have wanted.
• 38:36
  Corie: I was looking for a car, I was looking for a ride.
• 38:44
  Glen: That's exactly what she got.
• 38:45
  Glen: She did a brand new car and this is a young, 17 year old woman with down syndrome.
• 38:48
  Glen: When you think that'll happen in trinidad.
• 38:49
  Corie: Oh my god, but that's exactly what I, I don't know, I don't know, I don't know you know.
• 38:54
  Glen: So she went to college.
• 38:55
  Glen: After she, she went to clemson college and the thing is, you know everybody, when I hear people, I have a lot of friends who are teachers, right, and you know they talk about the fact that, oh, those children, car they can't survive in the school because look what going on with the bullies, and they are like fix it.
• 39:13
  Glen: That's another easy fix.
• 39:15
  Glen: Fix it, there is more work for the teachers.
• 39:19
  Glen: You have one teacher teaching a class with almost 40 students.
• 39:23
  Glen: Fix it.
• 39:25
  Glen: When you look at the models that a lot of the other developing countries are using at the top of the chain in the educational system, they no longer use that one teacher to 40 something students.
• 39:40
  Glen: They're no longer teaching a classroom only.
• 39:43
  Glen: Yeah, it's a lot of changes have been made and now they have the universal design for learning, where they teach students according to how the students learn and you don't try to force the students to learn how you teach.
• 39:57
  Glen: Yeah, so we still have this archaic system that we haven't changed.
• 40:02
  Glen: I mean this educational system.
• 40:03
  Glen: We use that whole um theater style teaching for over 100 years.
• 40:10
  Corie: Yeah, time to change it.
• 40:11
  Corie: There you go.
• 40:12
  Corie: Yeah, you're right, it's not.
• 40:13
  Corie: It's not only a disadvantage to people with disability.
• 40:15
  Corie: I think it's a disadvantage to every student, every teacher, every business that had a higher, students who come out of that school system.
• 40:22
  Corie: I don't know when we will.
• 40:23
  Glen: We will get to that point and then everybody thinks that, okay, we want to put our children in the school and we would cause their children to regress.
• 40:33
  Glen: That's what people think, yeah, people, there are some parents who got their children into like preschools and parents took their children out.
• 40:44
  Glen: When they came and they saw a child with down syndrome in preschool, they took the child out.
• 40:49
  Glen: It's almost like if they feel what my child will catch down syndrome yeah, there's a place like that.
• 40:54
  Corie: Still people think like that.
• 40:56
  Corie: Like I had experience, I want to say it would have been Newtown boys at the time and they had done a few maybe it might have been on the cricket team or the zonal cricket team or something like that and they brought some children from Lady Ho Choi home is it Lady Ho Choi, or yeah, and they brought them and they paired us.
• 41:14
  Corie: Everybody was paired with somebody who had Down syndrome.
• 41:18
  Corie: At that time everything was Down syndrome.
• 41:19
  Corie: I never heard the term autism then at all and I'll never forget the experience with a little fellow named Larry and it stuck out in my mind because there was a Larry Constantine stand there and as a little child then he played cricket.
• 41:34
  Corie: Whatever we did with the day we did with our buddy, we had a paired partner and I felt so much better for the experience, having just heard him talk and see that you don't hear the same dreams, you laugh at the same jokes you do.
• 41:45
  Corie: At that time you feel like it's almost like we are the outcast, because you're thinking that this person is not again contributing to society.
• 41:52
  Corie: They're not normal, quote, unquote.
• 41:54
  Corie: So I don't see where people might feel that their children wouldn't benefit from being around people who are different from them.
• 42:02
  Corie: It could only augur well for them.
• 42:05
  Corie: Understand the limitations of the schools.
• 42:07
  Corie: The limitations of the school system go well beyond disability, it's just.
• 42:10
  Corie: Our school system is one of the greatest.
• 42:12
  Glen: We're in a mess.
• 42:12
  Glen: We're in a mess, and it will take somebody with a very, very strong will to want to make that change.
• 42:20
  Corie: You might be that person with a strong will, because everything you're saying so far whether it's that anger or just your drive to learn more, to try to do something different is admirable.
• 42:28
  Corie: I know the legislation is something that you're working on you're advocating for now.
• 42:32
  Corie: When you first started in network, what was your main goal then?
• 42:37
  Corie: What did you want to see change and trend at when you all first came together?
• 42:47
  Glen: Well, the first thing was education no-transcript.
• 43:00
  Glen: So we say okay, well, all we have to do is get them in schools.
• 43:04
  Glen: That was not as easy as we thought it would have been Tough task, right.
• 43:10
  Glen: Yeah, that was a really, really tough task.
• 43:12
  Glen: So I say, okay, oh, they don't want to watch you learn in school, but what we have to do is change the legislation and fix things, because, you know, the same excuses that they gave me when I was trying to get my son into school, say like 22 years ago, is the same excuses they are using now, 22 years later.
• 43:37
  Glen: So much things can change in 22 years exactly you know, 22 years later, and you're telling me the same thing teachers not trained, the facility is not accessible.
• 43:48
  Glen: This, not the same excuses.
• 43:51
  Glen: So we have not progressed at all.
• 43:54
  Corie: So teachers, know with utt and all that.
• 43:56
  Corie: I know their teachers college might be the main thing then, which kind of was absorbed into UTT.
• 44:00
  Corie: And again, my wife went through that program but it seems to be now that on her syllabus she had some training about how to deal with children.
• 44:07
  Corie: That would have been different.
• 44:09
  Corie: Is it advancing there at all in terms of the teacher's training it has?
• 44:12
  Glen: advanced Because UTT has a bachelor's in special ed and UWE has a master's in special ed oh.
• 44:20
  Glen: I see Okay, good, good, but it has made absolutely no difference.
• 44:23
  Corie: Yeah, because I guess the structure of the school has changed.
• 44:25
  Glen: Because every year all those cohorts that have been graduating are back into the regular school system, so they have made no impact on getting persons with disabilities into that system.
• 44:39
  Glen: So they have all this training and they're not using it.
• 44:42
  Glen: What do they say about intelligence?
• 44:44
  Glen: If you use it, it's always a thing without action, yeah without action it's fruitless.
• 44:51
  Glen: You know you have all this know-how but you're doing nothing about it.
• 44:54
  Glen: So knowledge isn't power, it's the use of knowledge.
• 44:58
  Glen: Right, and I would tease all my friends with that.
• 45:02
  Glen: I said just pull down that, masters of the world, because you're doing nothing with it, you're wasting time.
• 45:07
  Glen: We're gonna do it for and I, I will ask them that right and and challenge them because they make no sense.
• 45:14
  Glen: Your master's in special ed to do what?
• 45:15
  Glen: Yeah, write papers on what.
• 45:17
  Glen: I mean.
• 45:19
  Glen: You, you have no impact on the educational system.
• 45:23
  Glen: Are you trying to change it at all?
• 45:26
  Glen: Are you writing to the minister, writing to service commission?
• 45:31
  Glen: Are you?
• 45:31
  Glen: Are you putting forward any new ideas on how we could fix this?
• 45:36
  Glen: Because we, with some of the groups that we interact with, you know we have the down syndrome international.
• 45:43
  Glen: I mean they, they inclusion international right.
• 45:48
  Glen: If the, if anyone googles them, they go all over the world incorporating inclusive practices and schools in the workplaces and things like that Right To show that it could work.
• 46:00
  Glen: And yet we keep making excuses here why it can't work.
• 46:04
  Glen: See what I tell you.
• 46:05
  Glen: I'm always solutions oriented, but we have a lot of people here who are very educated, have a whole set of letters before the names and after the names, and all they're good for is to keep coming up with excuses.
• 46:17
  Glen: Yeah.
• 46:22
  Corie: Why it can't happen.
• 46:23
  Corie: Why it can't happen.
• 46:23
  Corie: Why it can't happen.
• 46:24
  Corie: See, some of the things I find our society is systemic.
• 46:25
  Corie: A lot of times, you know to me is you talk to individuals, you have these conversations, even some people you might say who's in university studying this thing?
• 46:30
  Corie: And you all might be aligned in terms of what the outcome needs to be.
• 46:34
  Corie: You're you're taking a different approach to it, and they may be, because spreading the knowledge or the awareness is important too, but I don't know why some of our systems are so rigid.
• 46:42
  Corie: I want to blame capitalism, I don't want to blame again, or slavery or how we come here, but our systems, they're so sticky and they're so rigid.
• 46:50
  Corie: It's like.
• 46:51
  Glen: One of my friends would have been glad to hear you say that he's very much into african history and african culture.
• 47:01
  Glen: He's very, very well researched, right, and he blames everything on the us and capitalism.
• 47:03
  Glen: Yeah, they seem to have it.
• 47:06
  Corie: They, they, they.
• 47:07
  Corie: I mean there's the heart of capitalism, there's no more market economy than them, but they still seem to find ways to uh, advance things.
• 47:15
  Corie: It's almost like they're not married to some of these things.
• 47:18
  Corie: You know, the school system will change.
• 47:19
  Corie: It changes all the time Whereas we still like.
• 47:23
  Corie: When I talk to Calypsonians, for instance, it hurts me that more Calypsos not taught in school as literary devices what I had to learn Macbeth for.
• 47:30
  Corie: I can't understand none of that when we have writers and poets here that are doing great, great work great, great work.
• 47:40
  Glen: So I don't know where that systemic thing is, I don't know.
• 47:41
  Glen: So it's almost as you say, that not only capital, capitalism, but also colonialism yeah, colonial, exactly.
• 47:45
  Glen: That's still stuck in us where.
• 47:48
  Glen: This is how it was.
• 47:50
  Glen: This is how it always will be especially in education, because it's btn.
• 47:55
  Corie: You know this is square peg and you're wrong whole thing.
• 47:57
  Corie: But we'd rather shave off the edges of that square peg Because, look at, this.
• 48:02
  Glen: I went to Naprimo College in South Right, so one of your prestige schools.
• 48:06
  Glen: Right, my friends went to junior sec Right.
• 48:10
  Glen: Quite a few of them are millionaires out in Texas and Nigeria Because they went to junior sec.
• 48:16
  Glen: Back then junior sec was an actual vocational school.
• 48:20
  Glen: They had brand new equipment, lates and and all the other mechanical.
• 48:26
  Glen: So they did mechanical engineering, electrical engineering, and so when they came out they went into the energy sector and, of course, eventually they migrated right, and my sister.
• 48:39
  Glen: She went to a junior sec and then a senior sec and she's in the us.
• 48:45
  Glen: She's a speech to speech and language um pathologist.
• 48:48
  Glen: Some other girls one, one of them is a doctor in the us, one is a nurse in england, you know and they went to junior sec and then all of a sudden, junior sec became the bottom of the barrel.
• 49:01
  Corie: Yeah, it would have been the same thing where they say they're sorry for you, they're glad for you passing an opperium.
• 49:05
  Corie: You passed for junior sec.
• 49:06
  Glen: They're sorry to hear that, yeah they're sorry to hear that, you know whereas it should have been the other way around.
• 49:11
  Glen: So now, as I said, according to Universal, it's all designed for learning.
• 49:23
  Glen: You're forcing everybody to do academics.
• 49:24
  Glen: So what about the people who are technically inclined?
• 49:25
  Glen: You know sports or music or arts.
• 49:26
  Glen: You know there's no opportunity for them.
• 49:27
  Glen: You know they, they would have been you.
• 49:28
  Glen: You send them to a place where they could learn a vocational um, do vocational courses instead, and they would have been way better off and trying to teach them the academics.
• 49:39
  Glen: And then when they go UWE, then they had to start doing the practical, yeah.
• 49:42
  Glen: Or when they start an internship which is madness, yeah, when they could have been doing that practical from the time they were 11 or 12.
• 49:50
  Glen: And I've okayed, like how it was, of course.
• 49:53
  Corie: 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 us enough.
• 50:02
  Corie: You know what I mean.
• 50:02
  Corie: We want us to conform to what the society ought to be.
• 50:05
  Corie: When we are the society, what is the society?
• 50:09
  Glen: We are society.
• 50:10
  Glen: You know, everybody say when they want something to be fixed, well, the government or this one to blame or that one to blame?
• 50:16
  Glen: We are the ones to blame because we are the ones who sit around and do nothing.
• 50:20
  Glen: We are causing it.
• 50:22
  Glen: We are the ones watching people with disabilities being discriminated against all the time and doing nothing about it until it happens to us.
• 50:33
  Corie: Yeah, you can't know until you know.
• 50:34
  Corie: You know the thing about it is if the society not sensitized it.
• 50:37
  Corie: And that's why I was so shocked when you tell me there's no, there's no support group, there's no, you know, for a societal level then, but you're saying, from a legislation standpoint, that the ministry of social development is where legislation will fall to make changes for people with disabilities, and they actually they actually did.
• 50:54
  Glen: They actually have drafted legislation.
• 50:58
  Glen: Finally, after all the years since inception, since 2012, you know, we, we are lobbying for this.
• 51:05
  Glen: You know, um, we got the government back in 2015, before they changed, to ratify the united nations convention on the rights of persons with disabilities.
• 51:17
  Glen: Right, so that was a huge plus, you know, because, after that, countries are mandated to do to put certain things in place for persons with disabilities, and one of them, of course, would be legislation which will affect, you know, education, healthcare and all the things that um, housing, employment.
• 51:39
  Glen: You know everything okay, so it's broad, it's broad because it is the rally to support, empower and protect persons with disabilities so how did your advocacy change from just down syndrome to disabilities in general?
• 51:51
  Glen: No, as when they asked me before and how we could see, the only way we see we could make any changes is to lobby for legislation.
• 51:59
  Glen: So we can't lobby for legislation for a person with down syndrome alone I see, yeah, so it have to be for everybody.
• 52:05
  Glen: I see, you know, and it was interesting that the, the, all the other groups, I mean, well, we, of course, we partner with all the other groups, but their voices were not as loud, you know, for legislation, right.
• 52:20
  Glen: Right, you know, and I was saying to me that was the only way forward things, for things to change, because we cannot continue being just charity based, right?
• 52:31
  Glen: Um, so I had to depend on your goodwill, right?
• 52:35
  Corie: if you feel, to paint a ramp in your new building, you're pretty, otherwise you could open your restaurant on half stairs but this is one of the things that was so shocking to me, because when you said there's no legislation because draft legislation is still not legislation yet there, it is a step in the right direction, but we still don't have legislation I was hearing anything in government buildings about things like putting ramps and making it accessible to people in wheelchair, people who might be visually impaired, and so on, and I kind of assume it was law.
• 53:00
  Glen: No, it's not yeah, it's not law, so it's, it's still the.
• 53:04
  Glen: The government cannot force anybody to do it unless it's put into law.
• 53:08
  Glen: So, like the national policy for personal disabilities is a guide.
• 53:13
  Glen: Um bureau standards has has a building code manual where it tells you all the correct sizes for the doors, stairwells, things like that, elevators, you know, make it accessible for persons with disabilities, make it accessible for everybody, persons who are visually impaired, physically, you know, challenged.
• 53:34
  Glen: Everything is in place but there's nothing, no legislation, to say.
• 53:40
  Glen: I have to follow that building code.
• 53:43
  Corie: Yeah, like even when I was building my house, right, there's the building inspector in the regional corporation.
• 53:49
  Corie: You have to go there to get your plans approved, number one and then you have to stick to the plans when you're going to build the house.
• 53:54
  Corie: And then they must approve, give you final approval for that.
• 54:01
  Corie: For the completion certificate, everything.
• 54:03
  Corie: It's all about walls, it's all about paint, it's all about this and drainage and all those types of things.
• 54:04
  Corie: But it wasn't until I was telling you I had achilles injury and uh, well, now you're done.
• 54:08
  Corie: You had to do surgery and you're done for six weeks.
• 54:11
  Corie: For the first maybe week or two in a what do you call it?
• 54:15
  Corie: A splint.
• 54:15
  Corie: So you're not in the booty, you can't walk, and when I try, I have a flat house and I'm thinking, okay, I build a flat house, that's good.
• 54:22
  Corie: You know what I mean.
• 54:23
  Corie: It's all about people.
• 54:23
  Corie: As they get older, they're walking up and down stairs get harder.
• 54:26
  Corie: I think I'm good to go.
• 54:28
  Corie: It's only when I come home and it crutches the first day I to the house that is high and then another step up to go to the bedroom area because it looked nice.
• 54:43
  Corie: It was a nice thing when he was building the house make the thing look separate from and boy listen the kind of tiles we use and them step up.
• 54:46
  Corie: It was a hazard every time we had to.
• 54:46
  Corie: I had to because at some point my wife going back to work, I home alone, and I remember one time trying to warm some food right and no one crutches and I buy the microwave and I can't figure out how to reach from the microwave back to the cellar.
• 54:59
  Corie: I just have to buy the microwave and eat.
• 55:00
  Corie: So you're saying there's nothing that tells people from an infrastructure standpoint?
• 55:06
  Corie: Okay, this is what you're building a house to code in case of anything or nothing like that.
• 55:11
  Corie: We don't have that.
• 55:13
  Corie: Yeah, we don't have that.
• 55:14
  Glen: So it's really just goodwill of people, just good.
• 55:20
  Glen: So it's really just, it's goodwill of people, just goodwill, just goodwill.
• 55:22
  Glen: And you see, that has to change.
• 55:23
  Glen: So a lot of people still say, oh, we don't need legislation, we just need more awareness.
• 55:25
  Glen: We've been pushing awareness for the last almost 90 years.
• 55:29
  Glen: If they could go and ask the, ask um, the, the current president of blind welfare, or the, the chairman of parvy, you know persons with visual impairment.
• 55:40
  Glen: God asked them about that.
• 55:42
  Glen: They've been around for a very, very, very long time and ask them all the awareness things that they're doing and nothing has changed during.
• 55:49
  Glen: You know, and people even talk about that.
• 55:51
  Glen: Where you have people who are visually impaired, uh, they are sound engineers, they're doing all kind of jobs, literally all kind of jobs, as opposed to just weaving baskets.
• 56:03
  Glen: You know before, you know, when I was growing up, that's all you could do.
• 56:10
  Glen: But now they're doing all kind of jobs.
• 56:11
  Glen: I actually worked when I was working at the Ministry of Social Development.
• 56:16
  Glen: There were two young women who were with visual impairments and they were doing the same job I was doing.
• 56:21
  Glen: You know, they had an app that would talk to them.
• 56:24
  Glen: So they have their headphones in their ears and they're doing the same research and everything and developing the same papers.
• 56:28
  Glen: It's because it could be done.
• 56:30
  Glen: But what's the difference?
• 56:33
  Glen: Getting the opportunity right?
• 56:36
  Glen: So they were lucky, they were able to go to school to get that opportunity.
• 56:39
  Glen: But when you're unable to get into the school in the first place, so You're starting out on minus, you cannot be educated, therefore you cannot be integrated or you cannot be included, so you're not getting a job.
• 56:55
  Glen: You're cut off, literally cut off from society.
• 56:57
  Glen: And You're cut off yeah, literally cut off from society.
• 57:01
  Corie: And we cut off all families too, because it means that you then, as a parent, you have somebody who's dependent for their whole life.
• 57:08
  Glen: Their life or your life.
• 57:09
  Glen: And now you know children with disabilities are living longer than their parents, of course.
• 57:14
  Glen: So your entire life until you die.
• 57:16
  Glen: Yeah, you know, you take care of them.
• 57:18
  Glen: You know the first time my son told me yeah, I've.
• 57:20
  Glen: Well, of course, at this age I have issues.
• 57:25
  Glen: I had a very active lifestyle after learning how to do everything that my father didn't let me do.
• 57:31
  Glen: Right, you know I was very, very active.
• 57:33
  Glen: So you know.
• 57:34
  Corie: Now back issues knees issues, all that kind of thing.
• 57:37
  Glen: 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.
• 57:45
  Glen: I was like damn, there we go.
• 57:48
  Glen: You know, because when I used to be thinking that I have to take care, of course, for the rest of his life, for the rest of my life, you know.
• 57:57
  Glen: So to of hear him say that I'll say, yeah, I'm doing a good job?
• 58:01
  Corie: yeah, but as a parent it might be so easy to say, just just, coddle, just do everything for you know, you know you have somebody who you have to raise and just just take care of them.
• 58:11
  Corie: So how important is it for you to to see him get that independence and do some of the things you would have seen being done in the conference?
• 58:19
  Glen: Yeah, because it's thanks to the conference, because I used to do that.
• 58:22
  Glen: Oh, it started off like that.
• 58:24
  Glen: Yeah, because you don't know any better.
• 58:26
  Glen: You know, as far as you're concerned, everybody's saying it.
• 58:29
  Glen: When you have people, right, who, as I said, have all these letters before the names and after the names, letters before the names and after the names, and they're telling you he might never talk, he might never walk, he might never do this, he might never do that.
• 58:42
  Glen: Yeah, that's gospel, exactly.
• 58:43
  Glen: They know better than me, right?
• 58:44
  Glen: They are educated, they have a lot, of um, academic experience plus work experience in their fields, 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
  Glen: Come, I put on clothes, and I'm going to put the clothes on him.
• 59:04
  Glen: Every time I put on the t-shirt, he pull it off.
• 59:07
  Glen: I'm like yo, you gotta go now put on this t-shirt.
• 59:12
  Glen: No, no, pull it off.
• 59:14
  Glen: I'm like what's going on with this boy?
• 59:16
  Glen: And he took up another t-shirt and this one, daddy, this one, no, I put that back in the drawer, close the drawer, blam, pick up the one I wanted to put on him.
• 59:28
  Glen: And he took it off again and started to try to tantrum.
• 59:32
  Glen: I didn't tell his mother.
• 59:35
  Glen: You deal with that?
• 59:35
  Glen: yes, and she just leave.
• 59:37
  Glen: Just leave him wearing a pony t-shirt.
• 59:39
  Glen: Now, the t-shirt he wanted to put on was matching the pants, was matching the outfit.
• 59:44
  Corie: He do better than you.
• 59:45
  Glen: Yeah, you know.
• 59:46
  Glen: And then afterwards I started to understand he could make choices, you know, and we start allowing him a little more rain to make choices.
• 59:59
  Glen: When I go to shower, I do just like what my mother used to do Wash here, wash there.
• 1:00:04
  Glen: This is the rag.
• 1:00:05
  Glen: Show him how to put soap on it.
• 1:00:06
  Glen: Wash here, wash here Important parts out.
• 1:00:09
  Glen: You know we are playing.
• 1:00:10
  Glen: The shower is not a place to dance and splash up water.
• 1:00:14
  Glen: And he learned how to do it.
• 1:00:15
  Glen: The best calling part was when I went to one of the conferences.
• 1:00:21
  Glen: I saw this guy walking with his daughter in a stroller and she had a phone in her hand and she was playing a game.
• 1:00:33
  Glen: So I watched him pass and I asked him.
• 1:00:36
  Glen: I said what kind of phone do you daughter have there?
• 1:00:39
  Glen: He say iPhone.
• 1:00:40
  Glen: I say iPhone.
• 1:00:43
  Glen: I'm like how old is she?
• 1:00:45
  Glen: Three years old, I say.
• 1:00:47
  Glen: But that is her phone.
• 1:00:48
  Glen: Because I mean the phone.
• 1:00:49
  Glen: What is young?
• 1:00:51
  Glen: People call it a bejewel.
• 1:00:52
  Glen: Yeah, yeah, yeah, it's more rhinestones than one of Dolly Parton's dresses.
• 1:00:58
  Glen: So he said, yeah, yeah, she had her phone a long time and he pulled out his iPhone from his pocket, handed it to her.
• 1:01:07
  Glen: She rushed down her phone, went into his phone, find the app because I know all them iPhones connected on some cloud or whatever and she started continue playing the same game she was playing.
• 1:01:19
  Glen: And when I study all the times where Tyrese pick up my phone, put that down.
• 1:01:25
  Glen: That's not a toy, Do not touch the phone.
• 1:01:27
  Glen: You know that come down with like a ton of bricks.
• 1:01:32
  Glen: I was like what the hell this man, three year old daughter, have a smartphone.
• 1:01:37
  Glen: So no friend, I come back and buy a phone for him.
• 1:01:40
  Glen: And he was.
• 1:01:41
  Glen: How old was he then?
• 1:01:42
  Glen: I think he was probably about about 10 or something.
• 1:01:46
  Glen: He never had to change a screen on his phone yeah, I can't tell you I can't tell you how many screens, you, how many phones I've had.
• 1:01:57
  Glen: He's probably on his what, on his third phone I am probably on my what boy, the number up there, yeah, the number up there.
• 1:02:08
  Glen: I feel an ambassador say I pull that phone out of my pocket.
• 1:02:13
  Glen: We're all in the same boat, yeah boy.
• 1:02:17
  Glen: And I say, look at that, he never.
• 1:02:20
  Glen: I could count how when he, when he's doing dishes, I could count how many glasses or plates he's cups he's ever broken we should label myself as special.
• 1:02:30
  Glen: We call them special exactly when I think about how much glasses and plates I broke as an adult, that is not a child.
• 1:02:38
  Glen: I don't want to go back as a child, but as an adult, of course, and he has not, you know.
• 1:02:44
  Glen: So I tell him well, you, you washing all the ways from now on yeah, I'm bad, that's not bad at all.
• 1:02:50
  Corie: So you feel like parents do this.
• 1:02:51
  Corie: Do the children at this service by taking over for them and not giving them their independence yeah, a major disservice because and what I was trying to tell them?
• 1:03:00
  Glen: you see, they think it's easy, right, like I used to think it would have been easy for me to to give him a shower and dress him right.
• 1:03:07
  Glen: But in the long run I'm making things harder for myself because the sooner I made him independent, things got easier for me, and that's why I keep trying to tell the parents.
• 1:03:20
  Glen: They would keep saying that oh, glenn, you don't understand my son, not like Tyrese.
• 1:03:27
  Glen: I say, no, I do understand you, not like me, I see, because you're not prepared to do what I would do at all.
• 1:03:35
  Glen: Because, as I said, it's the same thing.
• 1:03:37
  Glen: They look for the easy way out.
• 1:03:40
  Glen: Know, you want to help them so much and you don't understand you're not helping them, you're hindering their progress, you hind, you stopping them from actually learning and developing, developing different skills, because you want to do everything for them yeah, like it's the same with my son.
• 1:03:56
  Corie: You know, my son is 12 now and I remember the first time he always, you know, he grew up it was just three of us, right, so he don't have any siblings or anybody in the house.
• 1:04:04
  Corie: So he's taking pattern from adults on what to do.
• 1:04:06
  Corie: And one time he decided, you know they go out and think and he wants to make ramen or he wants to make eggs or something he must be seeing on YouTube and listen, the and listen.
• 1:04:14
  Corie: The first time this man went in that kitchen it was mayhem and I had to kind of calm myself down and get a little patience on my wife and I said I said listen, it didn't always be so he now learning to do it.
• 1:04:26
  Corie: He go, have a little thing, I'll give him the guidance, come on.
• 1:04:28
  Corie: First instinct is the same thing.
• 1:04:29
  Corie: You say.
• 1:04:29
  Corie: I want to shout and say don't come back in this kitchen again.
• 1:04:31
  Corie: But now I see that man get up on a morning before I get up.
• 1:04:35
  Corie: He don't wake up.
• 1:04:35
  Corie: He set his alarm, he wake up, he make his breakfast, he organize everything.
• 1:04:38
  Corie: So most mornings to wake up he's come and said Dad, there we go.
• 1:04:42
  Corie: He don't like to reach nowhere late.
• 1:04:43
  Corie: So he said Dad, let me move.
• 1:04:44
  Corie: You know what I mean If you leave home by about quarter to seven.
• 1:04:46
  Corie: He in school by seven.
• 1:04:48
  Corie: He good To the point where the other morning he tell me, because he was ready, make coffee.
• 1:04:54
  Corie: He said Dad, show me how to make your coffee.
• 1:04:56
  Corie: I could do that for you so we could leave here by quarter to seven.
• 1:05:00
  Corie: I like what you're saying.
• 1:05:01
  Corie: He said, yeah, let me do it, because I realize you have a problem leaving here by seven.
• 1:05:06
  Corie: So I wonder how different it really is, because you have to go through that period as a parent where you let them go, they make the mistakes if they, they make the mess, as they say, in the bathroom and and it's more a role of functional guidance and getting them to the point because you can't know where you know you'll just get better over time exactly, and even with thais now we let them do a lot of things, but you know, we still the fear factor by the stove.
• 1:05:35
  Corie: All right, you know so I'm warning you.
• 1:05:40
  Glen: my wife carol, hearing some noises in the kitchen, so she get up next time.
• 1:05:48
  Glen: So I still line up here opening next time diaries what?
• 1:05:53
  Glen: So I jump up and fly outside.
• 1:05:55
  Glen: The noise she was hearing was tyrese was making breakfast.
• 1:06:00
  Glen: He already fried the eggs, so imagine the stove is already off, but the frying pan was still on the hot stove so it was just sizzling.
• 1:06:10
  Glen: I see, right, he had the butter, the cheese outside.
• 1:06:15
  Glen: He sliced the cheese already.
• 1:06:17
  Glen: So all things you know, we look at this cheese here because we're afraid for him with the knife.
• 1:06:22
  Glen: Right, he sliced the cheese already.
• 1:06:24
  Glen: And the noise he heard was him trying to toast the bread.
• 1:06:28
  Glen: Right, but the toaster wasn't plugged in.
• 1:06:31
  Corie: So every time, he presses it it flies back up.
• 1:06:32
  Glen: And he started to get vexed.
• 1:06:34
  Glen: So he presses it on and it flies back up.
• 1:06:36
  Glen: So that is the noise that woke us up.
• 1:06:39
  Glen: So he had already turned on the stove, fried the eggs, turned it off, yeah boy, and we didn't even know Mm-hmm.
• 1:06:47
  Glen: So he said you see that We'll show him how to do it, of course, of course.
• 1:06:53
  Glen: So he wouldn't do it on his own like that, mm-hmm.
• 1:06:55
  Glen: Another time I was out in the yard doing some work and I had started doing laundry and I left it to go and see about the dogs and my goodly son come and put soap and started the machine.
• 1:07:16
  Glen: He put about half a bucket of skip a little gotta be yeah.
• 1:07:22
  Glen: So it's a good thing it was skip and not breeze, otherwise you know it sets up your whole house.
• 1:07:28
  Glen: Yeah, you know.
• 1:07:30
  Glen: So I was just like I gotta take out everything and wash it out, but I can't give accident.
• 1:07:36
  Glen: So we start showing him how to do it.
• 1:07:38
  Glen: So you see, so it was a learning process for us, because we're still thinking he wouldn't be able to do it.
• 1:07:47
  Corie: Yeah, it's our fears.
• 1:07:48
  Corie: It's really projection, you know.
• 1:07:50
  Glen: As we tell parents.
• 1:07:51
  Glen: Now we put our preconceived limits on the kids.
• 1:07:55
  Glen: So even all those people the academics and the people with all the experience, all the therapists they still have their preconceived limits on what persons with disabilities can or cannot do and it still stops them from going any further.
• 1:08:16
  Glen: You know, even as a coach, right, you'll hear all trains of thoughts about how much weight people should lift.
• 1:08:24
  Glen: You know if they are getting older or what.
• 1:08:27
  Glen: One of my clients was coming up to her 60th birthday and she wanted to lose weight, get fit.
• 1:08:35
  Glen: All the things I said.
• 1:08:36
  Glen: Well, those are not really measurable goals, you know, because it's how much weight you want to lose.
• 1:08:40
  Glen: You want to be fit enough to do what Run up a flight of stairs or run a marathon or run a 5K.
• 1:08:44
  Corie: So you had to lose, right?
• 1:08:45
  Corie: You want to be fit enough to do what?
• 1:08:46
  Corie: Run up a flight of stairs or on a marathon, you know.
• 1:08:47
  Glen: So you had, you had to know exactly what you wanted to do and we started working together.
• 1:08:50
  Glen: And at her 60th birthday, people couldn't recognize her.
• 1:08:53
  Glen: Her sons were both um international footballers at the time, playing for different clubs.
• 1:09:00
  Glen: Right, and when she sent them a video of her leg pressing 16, 45 pound plates, oh, wow, wow, that's impressive.
• 1:09:10
  Glen: Yeah, one of them what, what?
• 1:09:13
  Glen: are you doing?
• 1:09:13
  Glen: Why give you so much weight to push for 10 reps now?
• 1:09:19
  Glen: She didn't start off like that right.
• 1:09:21
  Glen: She started off with not one weight on the leg press.
• 1:09:24
  Glen: But the whole thing is and she never lifted weights before but the whole thing is removing limits, right, and of course, with guides, you know.
• 1:09:35
  Glen: So you're doing the right thing.
• 1:09:36
  Glen: You start off slow, you warm up and you just keep going Right, right.
• 1:09:42
  Glen: But the whole thing is removing those limits, of course, because I cannot look at you and say what you can or cannot do.
• 1:09:48
  Glen: I can't do that.
• 1:09:49
  Glen: But yet we do that with people with disabilities all the time.
• 1:09:52
  Glen: Yeah, you know, we just watch them and okay, that's it.
• 1:09:57
  Glen: Can't be employed here, can't go to school here, can't do this, can't do that.
• 1:10:02
  Glen: And we don't know.
• 1:10:03
  Glen: Everybody with a disability is different.
• 1:10:06
  Corie: Yeah, that's the other thing too, like the whole discussion about a spectrum again, which was a word I didn't know at all back in the day.
• 1:10:11
  Corie: People, even with the same disability or the same condition, it's different variables.
• 1:10:20
  Corie: Like I was telling you about a lady I read about by the name of Temple Grandin.
• 1:10:22
  Corie: She's on the autistic spectrum, but she's a well industrial engineer.
• 1:10:28
  Corie: She does a lot of design, so she's also into uh animals.
• 1:10:31
  Corie: So what she did was she was able to look at the way uh cows were being slaughtered and realize that, listen, these all the stress and all the animals too much.
• 1:10:39
  Corie: You could do this in a much more humane way that keeps the animals less stressed, which would lead to better milk, better, better, better dairy, better beef, for instance.
• 1:10:48
  Corie: And she redesigned the whole system and the point that she was trying to make is that her ability to see things that the people who we call normal, normal thinking people wouldn't be able to see.
• 1:11:00
  Corie: Because she said, I could see what the cow see, and so she's the same thing.
• 1:11:03
  Corie: You say no, no, she said all these academics who've read and all that.
• 1:11:06
  Corie: Well, there's a form of intelligence, but we mustn't limit intelligence to that.
• 1:11:11
  Corie: So she's a huge advocate for people who are on the spectrum or any disability really to join the working world, and she keeps saying, yes, if they join the working world, you're going to have accommodations for them.
• 1:11:22
  Corie: We have to adjust.
• 1:11:23
  Corie: So a big part of her work is she might be 70 something now, but her life's work is to help people like myself adjust.
• 1:11:31
  Corie: So how we think about people or see people differently, so that we respect different types of minds that we have, and just where you start off to contribute to society.
• 1:11:40
  Corie: You know, do you think it's something that we we could work towards entering that?
• 1:11:44
  Corie: But I feel like we're so far from it when you talk about it.
• 1:11:47
  Glen: Well, that's that's the thing we, we.
• 1:11:49
  Glen: We are far from it, but it's not impossible and it will not take as long as we think, right?
• 1:11:54
  Glen: You know, I remember in one of our earlier discussions that you mentioned, um, not reinventing the wheel, right?
• 1:12:02
  Glen: So, even with working towards the disability legislation, we have so many developing countries.
• 1:12:11
  Glen: Dr Paul Richards, at our conference this year, at the Hyatt for Wolledown Syndrome Day, he actually called out a list of all the countries that have disability legislation.
• 1:12:23
  Glen: It was a very long list, but we know the list.
• 1:12:30
  Glen: We're definitely not on it, right?
• 1:12:31
  Glen: We have even barbara signed their legislation earlier this year, right?
• 1:12:33
  Glen: But the whole thing is we don't have to reinvent the wheel and we don't have to dumb things down either, because that's another thing we do very well, right, we'll take part of this, from here, part of this, from here, part of this.
• 1:12:44
  Glen: We'll leave out this part because we don't need this, but it comes like, you know, the bible.
• 1:12:51
  Glen: You know it's in chronological order if you take out a segment it would make sense it might make sense exactly, and that's why you know, we end up on the wrong side of the law a lot of times.
• 1:13:02
  Glen: And those defense lawyers make a lot of money, of course, because they leave enough gaps.
• 1:13:07
  Corie: Maybe that's why there's gaps.
• 1:13:08
  Glen: Probably Right.
• 1:13:10
  Glen: So I remember having this conversation with a very strong advocate back in ED and they were telling me that, oh, we can't just look at their legislation.
• 1:13:21
  Glen: They have worked over 50 years, you know, to get their legislation, their legislative agenda, to this point and we need to go through that same teething process.
• 1:13:33
  Glen: I look at them and say, well, you ought to be crazy, I don't have 50 years, just copy Exactly.
• 1:13:39
  Glen: I say you're mad, or in 50 years I'll be dead.
• 1:13:42
  Glen: I don't have all that time to waste.
• 1:13:44
  Glen: And you see, that's what people keep saying.
• 1:13:46
  Glen: I mean, since I started in network first, people tell me don't start in network, it won't make sense, you know, because the government doesn't care, society doesn't care, so it doesn't make any sense doing that and advocating I still start in network, don't try to move towards the legislation.
• 1:14:04
  Glen: We still got the UNCRPD ratified, we still got the national policy on persons with disabilities amended and now we're pushing towards finally getting legislation to show how it will benefit persons with disabilities and literally change their future and even benefit us as a real self-society.
• 1:14:26
  Glen: You know, we really need to move away from that charity model of looking at people with disabilities to the more social model of accepting them as part of society instead of leaving them on the outside, of course, because once we continue leaving them on the outside, society doesn't know them, they don't know society, so they'll never be apart.
• 1:14:48
  Corie: Yeah, we're not putting ourselves in a position to benefit from them at all At all Because one of our catchphrases, opportunity is revealed potential.
• 1:14:56
  Glen: So they said, I can't say what you could do or cannot do, but the whole thing is, I'll give you an opportunity to try.
• 1:15:01
  Glen: If I don't let you try, how will I know?
• 1:15:04
  Glen: So it's the opportunity that will reveal your potential.
• 1:15:08
  Glen: And through that system we started our mentorship program, you know, with corporate TNT, and through that we have young adults with Down syndrome gainfully employed, some of them who did not go to an inclusive school but given the opportunity to work, they learned what they had to do and they're able to function.
• 1:15:31
  Glen: You know, we we see a lot of um.
• 1:15:34
  Glen: Well, now you see a lot.
• 1:15:36
  Glen: You see a lot more now because of social media.
• 1:15:38
  Glen: But back in the day, the only people you'll see with dancing, gym working, you know, and like in 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 and out.
• 1:15:50
  Glen: So their job is a hugger.
• 1:15:52
  Corie: Right.
• 1:15:53
  Glen: Right, they had a television show, not born well, they are born this way but this group of young adults you know that was an Emmy winning show, but not that one.
• 1:16:03
  Glen: Adults you know there was an emmy winning show, but not that one.
• 1:16:07
  Glen: They had another one where they were depicting the life of a couple with down syndrome, but that was the worst thing that I saw to myself, because one they weren't living independently, they were living in like an annex of one of the parents home and the mother would come in a week them up in the morning and give them breakfast and get them ready for work, and then when they go to work, one of them her job was to um, I think put stamps on the envelopes, and they were sitting on the floor.
• 1:16:40
  Corie: you know putting stamps like a 12 year, like not a 12-year, like a six-year-old.
• 1:16:43
  Corie: Yeah, you know so I'm like this is an adult, isn't that dependency thing, exactly?
• 1:16:47
  Glen: Of course this is an adult, and when I look at where my son was working for Aeropostcom and he was functioning just like one of the other employees Right you I actually went to you know, went to the airport and I stood up in the manager's office.
• 1:17:10
  Glen: I stood up in the manager's office and he said look what will happen.
• 1:17:13
  Glen: And I see a little alarm went off.
• 1:17:15
  Glen: I see him jump up from his seat, he go on.
• 1:17:18
  Glen: A little chip of paper popped up in a small machine.
• 1:17:23
  Glen: He grabbed the chip of paper and he went down into the warehouse.
• 1:17:28
  Glen: So him, the manager told me, come with me so I watching.
• 1:17:31
  Glen: So he's walking with this little chip of paper and looking at the shelves, looking at the shelf, and then he stopped.
• 1:17:37
  Glen: He took a package off the shelf, he scanned it and then he walked to the exit, to the from the warehouse to the front and scanned it again and took it to the front, you know for whichever um customer came to pick it up and then he came back in.
• 1:17:56
  Glen: So you know, of course I'm thinking the piece of paper of row 7, aisle 5, shelf, whatever number, or anything like that.
• 1:18:07
  Glen: The piece of paper was a barcode, I see.
• 1:18:11
  Glen: I'm like.
• 1:18:11
  Glen: So how he know where to go, you know, but he learn how to do it of course he learn.
• 1:18:17
  Glen: For it to come off the shelf, he had to scan it off the shelf, and then for it to leave the warehouse, he had to scan it again.
• 1:18:22
  Glen: So when he check the records you can see, okay, it left the shelf at this time, it left the warehouse at this time.
• 1:18:28
  Glen: Makes sense, accountability.
• 1:18:30
  Corie: And I didn't even think yeah, he was been doing that well.
• 1:18:33
  Corie: Imagine if you all didn't make the sacrifices to teach him to do the things home.
• 1:18:37
  Corie: He would not.
• 1:18:37
  Corie: He would not be much, much of a function in our working space.
• 1:18:41
  Corie: So exactly, it's so important.
• 1:18:43
  Corie: And you were telling me as well that you have one child with down syndrome who is doing seo recently.
• 1:18:48
  Corie: So so what are your possibility?
• 1:18:49
  Glen: again to secondary school yeah, so we're waiting to see what will happen.
• 1:18:52
  Glen: We had one, um rachel, last year.
• 1:18:55
  Glen: She did seo and she went to her civil.
• 1:18:58
  Glen: So she was always at at nine years old.
• 1:19:02
  Glen: She started her own cupcake business.
• 1:19:04
  Glen: Yeah, you know Rochelle's Sweet Treats, oh nice.
• 1:19:06
  Glen: So that's still going well.
• 1:19:08
  Glen: So she's doing that at Seville, continuing with the cooking and making, of course, going into other menus, you know.
• 1:19:16
  Glen: So she's doing very, very well.
• 1:19:18
  Glen: So, pedro, now we are waiting to see what the results will say.
• 1:19:23
  Glen: You know, with him it was a fight to get him into school.
• 1:19:27
  Glen: It was a real challenge with Rochelle as well.
• 1:19:31
  Glen: Her mom had to go and sit in the school with her because they didn't provide the student aid as they're supposed to, of course.
• 1:19:38
  Corie: yeah, yeah, same thing with Pedro, yeah same thing.
• 1:19:41
  Glen: The system is flawed.
• 1:19:43
  Glen: You know when you think about it and, as I said, it's the same excuses they give when my son was going to school.
• 1:19:50
  Corie: I like the spirit you have, glenn, because I don't like when people say, okay, day 50 has advanced.
• 1:19:56
  Corie: At one point there was zero, so we want to push back the zero.
• 1:19:59
  Corie: You know, it's like we don't want to start with day one at all, ever in anything.
• 1:20:09
  Glen: Start somewhere, zero.
• 1:20:10
  Corie: You know, it's like we don't want to start with day one at all, ever in anything.
• 1:20:11
  Glen: Yes start somewhere.
• 1:20:12
  Glen: Everything flawed, everything flawed.
• 1:20:14
  Glen: When you start it flawed, yeah, you fix it as you go along.
• 1:20:16
  Glen: Yeah, we just fix it.
• 1:20:16
  Glen: Yeah, it is, it is easy fixes, but you had to want to fix it.
• 1:20:18
  Glen: You see, we we have.
• 1:20:18
  Glen: Um, this was so interesting, this analogy, right.
• 1:20:25
  Glen: I was on a course with some Caribbean counterparts, so there were two Jamaican guys on the course and one time, you know, the audience began to pick on.
• 1:20:37
  Glen: They want to fight all of us, over 60-something of us and they want to fight all of us.
• 1:20:43
  Glen: So they said that, oh, we are toy soldiers all the trinnies yeah, we are the coup and we kill nobody.
• 1:20:52
  Glen: You know we are toy.
• 1:20:53
  Glen: It all happened in jamaica.
• 1:20:55
  Glen: All of them dead, something dead, you know.
• 1:20:58
  Glen: And then one of them went on to say why we are toy soldiers.
• 1:21:03
  Glen: He said during the slave trade.
• 1:21:05
  Glen: You know, when the ships coming down selling slaves, they start with Haiti, and then Jamaica, yeah, and then they're coming down.
• 1:21:13
  Glen: So the last person on the chain we get all these sick, lazy, weak slaves.
• 1:21:21
  Glen: So I'm listening to them saying this and you know we're getting angry.
• 1:21:28
  Glen: But when I do something, I think about it.
• 1:21:30
  Glen: Where's the first slave revolution and the most?
• 1:21:34
  Glen: Yeah, and up to now, them Haitians can't get together.
• 1:21:38
  Glen: It causes all the war-like tribes, that from different tribes, of course, yeah, tribes, and then Jamaica and then coming down, and when we look at our mentality, they could do us anything and once they stop the FET well, yeah, what's kind of coming back every year?
• 1:21:58
  Corie: Is that something to celebrate?
• 1:21:59
  Corie: Is that something to celebrate?
• 1:22:00
  Corie: Yeah, so I couldn't give X to them.
• 1:22:02
  Glen: Yeah, yeah, yeah, I couldn't give X to them.
• 1:22:04
  Glen: I understand, I was like damn, but we could fix this, yeah, I think so.
• 1:22:09
  Corie: I think so, like, even, as you say, with rochelle, with the cupcake business.
• 1:22:12
  Corie: Through the same podcast, I met temple grandin.
• 1:22:14
  Corie: Um, there was a man and his son, I believe his son had down syndrome as well and he was doing socks.
• 1:22:21
  Corie: They started making, they had a sock business and the boy would deliver them for himself.
• 1:22:25
  Corie: He said he wanted in a certain radius, he wanted to deliver them himself, and that kind of thing.
• 1:22:30
  Corie: So it's not, it's not that we the limits, as you said, we, we put on people.
• 1:22:34
  Corie: 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's become very, very popular in Trinidad now.
• 1:22:43
  Corie: Yeah.
• 1:22:43
  Glen: 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 down a very accomplished self-advocate with Down Syndrome just to show parents this is where your child could be Once you keep them back, once you keep them back, once you stop treating them special and once you teach and empower them.
• 1:23:05
  Glen: This is where they could be right.
• 1:23:06
  Glen: Because people always feel, oh, that could happen in the us, that could in the uk, that can't happen here.
• 1:23:12
  Glen: It could happen here.
• 1:23:13
  Glen: We have all the examples.
• 1:23:14
  Glen: You know my son is working and he doesn't have that.
• 1:23:18
  Glen: All the verbal skill he could speak, you'll understand.
• 1:23:21
  Glen: But you could follow directions, he could follow instructions.
• 1:23:24
  Glen: But we have Kelly working at, permanently employed at Scotiabank.
• 1:23:27
  Glen: You know we have Suria working at Hyatt Regency.
• 1:23:30
  Glen: You know Lisa used to work at Hyatt Regency as well.
• 1:23:34
  Glen: Danielle, you know she was at Unicot, you know.
• 1:23:41
  Glen: So we are getting the opportunity, some corporate tnt, because they, they are partnering with us and they are seeing that, hey, they could actually function add value yeah, they could actually function.
• 1:23:53
  Glen: And everybody talks about when um christy was the first young woman with down syndrome to get ojt contract, you know, with Officer of the Prime Minister, jenda Anute, and they said she was the life of the office Because she's very quick with her very sharp talk.
• 1:24:12
  Glen: She used to have everybody go in.
• 1:24:15
  Glen: You know the office, and so look at that, all of that is missed out because these people were not given an opportunity.
• 1:24:22
  Glen: They didn't even get to go to an inclusive school.
• 1:24:25
  Glen: So if they did get the opportunity to go to an inclusive school, what?
• 1:24:30
  Corie: would have happened.
• 1:24:31
  Corie: It would be leaps and bounds ahead.
• 1:24:33
  Glen: Yeah, as well as the people as you mentioned before, because everybody feels, oh, we just want to get our children in school, so there's no benefit for the other students.
• 1:24:41
  Glen: But the other students, you have to learn them.
• 1:24:49
  Corie: You have to learn about them and you learn about yourself.
• 1:24:51
  Corie: You know, glenn, in the in in is, learn about yourself.
• 1:24:52
  Corie: You start to understand your own patience, your own tolerance, your, as you said, imagine you being angry about other parents who taking a lot for granted.
• 1:24:58
  Corie: You imagine what a little child could see if my son was to be around, be around somebody who was differently abled or any kind of disability.
• 1:25:07
  Corie: He could sort of say, hey, this lazy style I have doing this, or I don't want to stay up late doing this.
• 1:25:13
  Corie: Look what this man doing, look what this little girl doing.
• 1:25:15
  Corie: He might see himself differently.
• 1:25:17
  Corie: But, boy, as a society, you think legislation is going to make that change?
• 1:25:22
  Corie: You think legislation, we as a country, will be famous for passing law and doing nothing after you?
• 1:25:26
  Glen: know, you think legislation gets us there.
• 1:25:28
  Glen: That's why I have two attorneys on my board, right?
• 1:25:31
  Corie: 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?
• 1:25:39
  Glen: yeah, because the whole thing, as I said, it is an easy fix, but we are the one to fix it.
• 1:25:44
  Glen: Yeah, yeah, if we don't want to fix it, it will never fix and we'll just continue making excuses.
• 1:25:50
  Corie: Yeah, well, one of the things I always look at with the politics too is that we have a recent change of government and if you have draft legislation, then I believe it's Van Damme or it is social development now as well.
• 1:26:01
  Corie: And you know, we have a tendency that when we come in place, I have some friends on some boards all of them fired now because they have a new government.
• 1:26:08
  Corie: So the idea is to scrap everything the last government do and start afresh.
• 1:26:13
  Corie: So you're ready to deal with all that when you go back in, you partner with the ministries and I guess you have to deal with whoever in power.
• 1:26:19
  Glen: Yeah, we've already written to them, you know, trying to set up meetings and we're hoping that they don't try to reinvent the wheel.
• 1:26:28
  Glen: Right, we're hoping we have about three different existing drafts for that legislation and you know it's up to them.
• 1:26:45
  Glen: They could take it from there instead of starting from scratch, you know, and actually be the ones to make a difference in the lives of persons with disabilities.
• 1:26:48
  Corie: Of course, of course I'm confident that it will get done.
• 1:26:50
  Corie: You know we have to.
• 1:26:51
  Corie: We have to hold our governments, or what you're going to call political parties.
• 1:26:55
  Corie: It should be like a relay, but we street it like a set of different hundred meters rather than a relay.
• 1:27:01
  Corie: You know everybody want to go back to the start line.
• 1:27:03
  Glen: Yeah, it's something else to see, and we keep setting back the country Of course we can't get to the 50 years if we never start.
• 1:27:10
  Corie: And um, the, the, the.
• 1:27:12
  Corie: The idea that we're doing something for a group of people with disabilities is also something when I was talking to you, shedding light on the fact that any one of us could have to deal with that tomorrow.
• 1:27:24
  Corie: Life does change.
• 1:27:26
  Corie: All kinds of different things happen.
• 1:27:27
  Corie: I was telling you about.
• 1:27:28
  Corie: I have a little sister who two years ago got in a car accident that was fatal for two people and she spent a long time in hospital and a long time in recovery.
• 1:27:38
  Corie: I was seeing her just this weekend.
• 1:27:39
  Corie: She's going through physical therapy and everything.
• 1:27:42
  Corie: Thank God weekend.
• 1:27:42
  Corie: Uh, she's going through physical therapy and everything.
• 1:27:43
  Corie: Thank god she could.
• 1:27:44
  Corie: She could walk with a lot of help.
• 1:27:45
  Corie: Now she's learning and I saw with a coloring book she's doing occupational therapy and it makes you realize that it's not.
• 1:27:51
  Corie: It's not some some distant group of people.
• 1:27:53
  Corie: It could be.
• 1:27:54
  Glen: It could be anybody yeah, literally could be anybody you know what?
• 1:27:58
  Glen: um, there's this police officer.
• 1:28:00
  Glen: I can't remember his name, but he lost his vision.
• 1:28:02
  Glen: I think he was in his, in his 30s and, you know, compared to the other person who was bitter and angry, he's very instrumental now in helping people with visual impairment, even people who have been blind since birth to use assistive devices.
• 1:28:19
  Glen: You know he could, they could consult with him on which are the best brands, you know which are the best software and everything.
• 1:28:26
  Glen: And that's incredible, of course, and those are the things that we want to hear you know, not not throw your hands up in the air and wave it like we just don't care.
• 1:28:39
  Glen: You know, and or the woe is me, or we just hug one another and sit around and sing kumbaya.
• 1:28:46
  Glen: You know, we have to save our society and all of us have to do it.
• 1:28:53
  Corie: You know we can't just continue to just sit back and do nothing yeah, yeah, and even when, the way you put it that you live past a certain age, all of us gonna deal with them issues, yeah.
• 1:29:06
  Glen: I deal with it now, if you give me something to read now.
• 1:29:08
  Glen: I don't want my glasses, so I'll be.
• 1:29:13
  Corie: In any other country.
• 1:29:14
  Corie: I legally blind you.
• 1:29:14
  Corie: If I take off my contact, I don't know.
• 1:29:16
  Corie: You're still there.
• 1:29:17
  Corie: I can't see nothing, you know, and that's why Tyree said you go, take care of yourself, you're in good hands.
• 1:29:22
  Corie: Exactly, but I wonder how much, as you say, changing the society, because when we do get to that age and we've not built homes that could accommodate a wheelchair, or another ramp, or all the doorways too small or, like I say, a step up and a step up, or you're telling me to build these massive houses with all the bedrooms upstairs.
• 1:29:42
  Glen: Yeah, I had a lot of friends there.
• 1:29:43
  Glen: You know, as they get older they have to sell their homes, the dream home.
• 1:29:46
  Glen: You build a nice dream home five bedrooms upstairs, a half a bathroom downstairs, you know.
• 1:29:52
  Glen: So anything happen to you, you don't have not one bedroom downstairs.
• 1:29:56
  Glen: So all of them starting to get older now and they can't negotiate these stairs.
• 1:30:00
  Glen: And now the stairs are nice and pretty so you can put in a sliding chair because it wasn't designed for that.
• 1:30:08
  Glen: So you see that that is nothing in people's minds at all.
• 1:30:12
  Glen: That we're going to get older, yeah, we won't be able to do that.
• 1:30:15
  Glen: So I'd rather sell the home and move into a flat home, of course, and even when they have to renovate that home, you know, to make it suitable yeah, yeah, you had to renovate it.
• 1:30:24
  Corie: You have to do something, build a bathroom downstairs.
• 1:30:27
  Corie: Many times, or even sometimes, you know, we get to the point where you have to take care of your parents.
• 1:30:32
  Corie: There's a lot that you have to adjust.
• 1:30:33
  Corie: So that's why I say I trust the way you say in terms of legislation, because again, going back to that corporation telling me to put drainage, if I did not put drainage in my house because drainage must be costing me extra 50 000, I would not put and then I would be causing a hazard to myself and to my community.
• 1:30:49
  Corie: Same thing I was telling you from a business standpoint if ocean will come in and say we have 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 additional cost to me as a business.
• 1:31:01
  Corie: Like our one office we have, I I would not known at all.
• 1:31:05
  Corie: The railing is, it's dangerous, it's just too low.
• 1:31:09
  Corie: It looked nice and it have a railing, but just too low.
• 1:31:12
  Corie: A man lean over that is problem.
• 1:31:14
  Corie: So thank god they have a osha that come and they see it, because who feels it knows we've had people who've been damaged on how excited.
• 1:31:22
  Corie: We have had people who passed away while working with us.
• 1:31:24
  Corie: So until you deal with that, when you now start an offer business, you might not understand why that legislation is important.
• 1:31:30
  Corie: So I feel like if the legislation is there, that helps me protect myself from myself.
• 1:31:36
  Corie: So build a house one time where wheelchairs could go, because you could end up there.
• 1:31:42
  Corie: You don't know what tomorrow brings.
• 1:31:45
  Glen: You really don't know what tomorrow brings you.
• 1:31:47
  Glen: Really, you really don't know.
• 1:31:48
  Glen: And the whole thing is we.
• 1:31:49
  Glen: We are our brothers keeper.
• 1:31:50
  Glen: You know, we've become very selfish, self-centered, you know it's, it's amazing.
• 1:31:56
  Glen: I I used to see that before, you know, when I'm in the office and parents would come in with their children in the morning, you know, drop off their bags before they go to take them to school, and they would just drag them through the office and they, the parents, are saying good morning, the children are saying good morning.
• 1:32:14
  Glen: I was like there's no way I could enter any building, any, any office anywhere with my mother and not say good morning.
• 1:32:26
  Corie: That happened the next day.
• 1:32:30
  Glen: My head flying forward with one clout, but yet we have that now.
• 1:32:35
  Glen: You see people walking into buildings.
• 1:32:37
  Glen: If you're walking and tell somebody good morning, and they look at you like why are?
• 1:32:42
  Glen: you telling me good morning Because they don't care about anybody, they only care about themselves.
• 1:32:47
  Glen: Yeah, you know, and and that is what we we have to change that in society.
• 1:32:52
  Glen: But it has to start in the home, because if parents not teaching their children that and this is across the board, this, this is not only uh people would say, in fact it's, sometimes it's even better in the low-income homes, you know, than in the higher middle-income homes, you know.
• 1:33:10
  Glen: It's actually better, you know, where there are some parents still teaching that their kids matters and things like that yeah you know, but everything really starts in the home.
• 1:33:20
  Glen: So even with the empowerment of persons with disabilities, it has to start in the home and parents have to do better.
• 1:33:26
  Glen: I always tell them you're going to die, so all this protection where you're protecting your child, what's going to happen when you die?
• 1:33:33
  Glen: Then you just leave them up to the wolves because you didn't even try to teach them some martial arts, some good touch, bad touch.
• 1:33:40
  Glen: You don't do anything.
• 1:33:42
  Corie: Yeah, basics, you can't cook for yourself.
• 1:33:44
  Corie: Yeah, what happens so?
• 1:33:47
  Glen: then you just leave them.
• 1:33:47
  Glen: You're protecting them from everybody, and if anything happens to you there, they are an adult.
• 1:33:54
  Corie: Yeah, the mercy of everybody.
• 1:33:55
  Glen: Yeah, the mercy of everyone, and that's another part that we have not factored in right, and that's why our legislative legislation is to support, empower but also protect persons with disabilities.
• 1:34:09
  Glen: A lot of the existing legislation around the world they have different penalties if a crime is committed against a person with a disability.
• 1:34:19
  Glen: I see, yeah, there will be.
• 1:34:22
  Corie: Different layer of protection.
• 1:34:23
  Glen: Yeah, the penalties are over 100% more because that person is vulnerable.
• 1:34:29
  Glen: Of course, they can't protect themselves and you're taking advantage of them, so the penalties are different as opposed to if the crime was committed against you.
• 1:34:38
  Glen: I right, and those are the things that we need here, when you hear how many persons with disabilities, young women, are taken advantage of by family members, by strangers by neighbors.
• 1:34:52
  Corie: Yeah, I guess you hear all those stories?
• 1:34:54
  Glen: Yeah, and you know those stories do come out in the newspaper because the family keeps it hush.
• 1:35:02
  Corie: Mm-hmm.
• 1:35:03
  Glen: You know, because whoever the uncle is or whoever the brother is or the cousin, you know things like that.
• 1:35:09
  Glen: So these young children suffer at this relative, suffer at this neighbor who the mother is trusting to look after them because she can't stay home, as you said.
• 1:35:21
  Glen: She can't stay away from work all the time and just tell the neighbor go, just watch my daughter.
• 1:35:25
  Glen: It's her girl policy, not knowing the neighbor taking advantage of your daughter every time she leaves.
• 1:35:30
  Glen: She only found out a time and she got back early, of course.
• 1:35:33
  Glen: Yeah.
• 1:35:34
  Glen: You know, I've caught them, wow, you know.
• 1:35:37
  Glen: So who is protecting?
• 1:35:38
  Corie: them and, yeah, the measure of a society is oh, you treat your most vulnerable.
• 1:35:43
  Corie: To me that's what it is, and if nobody's protecting them, then we're in some trouble.
• 1:35:48
  Corie: We're in some trouble.
• 1:35:49
  Corie: Again, I want to personally thank you because the work you're doing, I appreciate the level of detail you're going into it.
• 1:35:56
  Corie: I mean you're in a situation, or trusting to a situation, that I think most men or parents would say, hey, this is some of the worst news you could get.
• 1:36:04
  Corie: You know, and you've taken it and chosen to use it to help a lot of people at this level of the household.
• 1:36:12
  Corie: Well, first, the individual themselves, the parents and the household, the societies, the businesses and I appreciate the work they're doing.
• 1:36:19
  Corie: It will bear fruit.
• 1:36:20
  Corie: It's already bearing fruit and I think I trust when you say that when the legislation applies, you will stick behind them, because you've been doing it throughout the legislation.
• 1:36:31
  Glen: Yeah, we have to, and I think that once the rest of society starts to step up and see how important this is, because persons with disabilities is the largest minority group, because it's across all sectors, of course, all you know, as they say, it's about this.
• 1:36:53
  Glen: Like this disability, don't discriminate.
• 1:36:55
  Corie: yeah, of course we see it, we see it and, as you say, who feels it knows when you put in it.
• 1:37:00
  Corie: You went and learn about it.
• 1:37:01
  Corie: So I feel like the only way for us to advance is really for all of us to feel it.
• 1:37:05
  Corie: It's just one society and if we continue to treat any part of the society as hush-hush or outcast or not, have the conversation, the thing that starts with conversation.
• 1:37:15
  Corie: So that's why, again, when you ask me how I decide is national impact, and I want to invite you to keep this as a running conversation, this space always open for you, because I would love for us to come back here and talk one day and say, boy, all the legislation passed this change.
• 1:37:28
  Corie: Everybody in schools, the teachers well prepped, the buildings are in place, the corporate world knows what it is and so on.
• 1:37:34
  Corie: And I always looking for I want updates on terry snow too.
• 1:37:37
  Corie: You said he's at.
• 1:37:37
  Corie: He's at detour now, is he okay?
• 1:37:39
  Glen: yes, he's at detour now.
• 1:37:41
  Glen: I hope he gets promoted, because then Maula was killing him.
• 1:37:43
  Glen: He got accustomed to when he wasn't working because after Aeropost you know the pandemic he got COVID, so he was out of it for a while.
• 1:37:57
  Glen: So he got accustomed to being at home playing games, watching movies, watching Netflix, watching sports.
• 1:38:03
  Glen: You're sure, right the good life.
• 1:38:04
  Glen: So you'll stay up until late in the night because then he can wake up late the next day.
• 1:38:08
  Glen: Make his own breakfast, do his own thing, but now he's a working man again, so sometimes I'll be, I'm sleeping, I'm here, I need television on, get up.
• 1:38:18
  Glen: And he's fast asleep.
• 1:38:20
  Glen: Yeah, and the television is on because he can't stay up how he used to yeah, man working hard yeah, because he's working hard, really deep, you know so the well transition.
• 1:38:30
  Glen: So I'm hoping he eventually gets promoted and go to some 8 to 4 or something.
• 1:38:36
  Corie: Yeah yeah, that's good man, continue to do what you're doing and, as I say, there's a there's an open space.
• 1:38:43
  Corie: But I'd ask you, before you go about, where funding is concerned, you were saying that you don't get government subventions now.
• 1:38:50
  Corie: So, in terms of funding your efforts, how are you doing that?
• 1:38:53
  Glen: Well, we actually approach corporate TNT and the government of Trinidad and.
• 1:38:58
  Glen: Tobago to fund the board is completely.
• 1:39:00
  Glen: We're all volunteers so we don't get paid.
• 1:39:01
  Glen: So everything that we get we are the board is completely.
• 1:39:03
  Glen: We are all volunteers, so we don't get paid, Right, Right.
• 1:39:04
  Glen: So everything that we get goes into the work that the network does.
• 1:39:08
  Glen: Okay, good, you know we don't have any staff that we pay, but besides, like the accountant and all the staff, Of course you have to pay them yeah.
• 1:39:15
  Corie: You have to pay them to make sure you're compliant so anybody interested in things like that, in terms of contributing, can reach out to you across all your socials, right?
• 1:39:25
  Glen: yes, we can.
• 1:39:26
  Glen: And then it's not only financial contribution, because you know, a lot of people feel you know, for any time they hear you have an interview, they feel just running at them your palm out, right.
• 1:39:35
  Glen: We also need, like technical support and even volunteers, and for you to just go pages, comment on our posts, like our posts, like the posts, share it or tell us what you think we could do better and come and help us do it, because a lot of people come with ideas, right, but we want people to help us implement the ideas, because we have a lot of ideas too, but we do have the hands to be able to and there are a lot of very skilled people.
• 1:40:04
  Glen: As I said, it's amazing the quality of people we have in Trinidad and Tobago right now, Right Over the years since we were just completely all the assistance we've gotten with regard to tertiary education.
• 1:40:20
  Glen: So we have so many more people, you know, with bachelors and masters and PhDs, and yet society is in a worse off position than it was years ago.
• 1:40:33
  Corie: Sometimes it's too much brains, not enough hands.
• 1:40:35
  Corie: There you go.
• 1:40:38
  Corie: So just give me a social again one more time before you go.
• 1:40:40
  Corie: Yeah, so Down.
• 1:40:41
  Glen: Syndrome Family Network DS Family Network on Instagram.
• 1:40:43
  Glen: Shows again one more time before yeah, so down syndrome family network ds family network on instagram, facebook um linkedin okay good yes and tiktok.
• 1:40:54
  Glen: So look for us.
• 1:40:56
  Glen: Um, you can also google me, glenn niles, we are also on youtube, yeah, I forget.
• 1:41:01
  Glen: And we, we are looking to push it a little further.
• 1:41:06
  Glen: You know, getting more younger hands on board to help us with that whole social media push.
• 1:41:13
  Corie: Well, what I'll do, I'll include, once I do, the description.
• 1:41:15
  Corie: I'll include all the handles and everything there, so anybody who wants to get in contact with Glenn on the network could get in contact.
• 1:41:20
  Corie: But, thanks bro, I learn on the net so we could get in contact.
• 1:41:22
  Corie: But, thanks bro, I appreciate you coming on.
• 1:41:22
  Corie: Thank you very much.
• 1:41:23
  Corie: Outro Music.