Encouraging Abilities Podcast

CURIKO - Filling the Spaces in Between

Community inclusion for people with developmental disabilities is and always will be a driving force for DDA. However, here in 2024, some new players and organizations are emerging to fill the spaces in between to help broaden horizons and cultivate relationships for people of all abilities. Say hello to CURIKO.
 
TRANSCRIPT
 
CURIKO – Filling the Spaces in Between
 
00:07
Welcome back to another episode of DDA's Encouraging Abilities podcast. I'm your host, DDA Communications Manager, Evan Kelly. Doing things a little bit differently today. We normally have one person either in the studio or on the phone, but today we have three guests in the studio, four, including myself. We only have two mics, so we're going to have to be agreeable when it comes to sharing. No fighting. So joining me today are Sarah Knowles, John A and Rodrigo Galvan. They are part of a new digital platform called Curiko.
 
00:37
They're here to talk to us about what Curiko is and why it's here. So all of you, firstly, thanks for making the effort to come out and, you know, make the trip, as it were, it's a lot harder than getting on a phone. So thank you for being here today. Thank you. Thanks so much for inviting us and also for accommodating, you know, allowing it to be three of us. That's kind of how we run with Curiko. We like to.
 
01:04
switch things up and kind of push the bounds a little bit. Exactly. Well, you know, for those of us, for those just listening, that's awfully cozy in our little pod booth here. So it's going to start to get warm, I think. So perhaps maybe just start by telling me a little bit about yourselves. How about you first, Sarah? Yeah. So I'm Sarah, Sarah Kay. And I'm a Cureco team member. I'm what we call a curator.
 
01:33
And all that really means is that I work with all sorts of individuals, organizations, and businesses to share their passions with others. Um, outside of work, I'm just someone who absolutely loves people and really am always happiest when I'm on top of a mountain. On top of a mountain. So you're hiking or like actual climbing? Hiking.
 
01:59
I do indoor bouldering, but haven't actually gone into the outdoor climbing scene yet. And John, how about yourself? Well, I'm not sure. I'm just, I'll just say that I'm getting three words. I'm a Catholic autistic gamer.
 
02:23
Catholic Autistic Gamer. That looks good. And what's your role with Kiriko, John? Just a member. And I guess I'm starting hosting. Oh, that sounds good. We'll get into that in a little bit. And how about yourself, Rodrigo? Hi. Well, yeah. My name is Rodrigo. I'm a Catholic.
 
02:42
What can I say about me? I love exploring. I'm a nomad at heart. I like food. I like cooking. I like trying new things. And I'm, I started as a member and I'm a host. It has been almost a year as a host in Curico.
 
02:59
And we were talking just earlier, you're from Mexico. Yes, I'm from Mexico. See, I said that properly. Yes, in Spanish, Mexico, right. And how long have you been in Canada? Five years, a little bit more than five years. So what brought you here?
 
03:16
I used to be a digital nomad. I travel around the world. I arrived here in Canada at the end of 2017 and I fall in love of the trees the trees that were near the the SkyTrain I was like this amazing. I want to stay here. So you you've given up Sun for rain is what you're saying Yes, but let's put it like this. I prefer cold. I don't like
 
03:42
warm weather, so I'm in the right place. You're an anomaly. You're an anomaly, I'll give you that. Okay, so Sarah, let's just talk about Curiko. What is it, what is it for, how does it work? Yeah, so...
 
03:57
We like to describe Curiko as a community building platform. So we have a website, Curiko.ca, and on this website, you can find tons and tons of different experiences. And these are all sorts of opportunities for anyone. Anyone can go on these, and these are kind of activities or events that can be one-on-one or group, in person or online. And they're just opportunities
 
04:27
to have different types of connection. More moments of connection to themselves, connections to other people, connection to spaces, to ideas, to a sense of, you know, culture. And so really that's what Curiko is, is we're a community building platform. We offer up opportunities for people with and without disabilities to come together and have experiences. So when was this started?
 
04:55
Yeah, so Curiko as Curiko kind of got started at the very end of 2020, very beginning of 2021 was kind of the time. However...
 
05:07
Um, Curiko kind of actually is just the most recent iteration of kind of a 10-year process. A 10-year process of research and development that actually came out of, um, a big kind of partnership between three really big disability-facing organizations, uh, Possibilities, Kinsite, and the Burnaby Association of Community Inclusion. We know them well. Yeah.
 
05:37
maybe something you know a little less well, which is a social design organization called InWiF Forward. So they came together with this social design group and started what is now a 10 plus year process of research and development. You call that InWiF Forward? InWiF Forward. In with? Yeah, InWiF Forward. InWiF Forward, okay. It's a social design organization. And Curacle is kind of one of the now most kind of
 
06:06
developed prototypes that came out of that organization. And so, your website mentioned some research that's been done before this. I'm trying to get a sense of the mission or the goals behind this that means you gotta do all this research. Can you talk to a little bit about that? Yeah, so what happened was these kind of three disability-serving organizations kind of came together.
 
06:36
And they really had this really, really brave kind of question they asked themselves. And that was, in the work that we are doing, are the people we supporting with intellectual disabilities actually living flourishing lives in community? And they answered, maybe no.
 
06:57
And based on that, they kind of reached out and partnered with this, at the time, very small but very exciting social innovation firm. And what they did together is they sought out to kind of therefore investigate.
 
07:16
What is it, how does social isolation for people with adults with intellectual disabilities look like? So based on that overreaching question, a group of people from all four organizations actually went and lived for several months back in 2014 in a social development complex in Burnaby. They lived there and they talked to people. They talked to them.
 
07:46
And not only did they get a sense of how their lives currently were, but they also asked what could they be. And some big things came out of that. Some big things was that social isolation wasn't just a matter of not having people, it was a matter of actually feeling connected to those people and also having a sense of a couple of things. So having a sense of purpose in their lives and also a sense of kind of novelty.
 
08:15
this kind of idea that maybe there wasn't really kind of flourishing lives. So lives that were connected to lots of moments, big and small, of different types of connection. You know, moments of awe and beauty and also purpose. Mm-hm.
 
08:34
And so that that was kind of missing. And so what started was initially something called Kudos. And that was creating opportunities for people with intellectual disabilities to go on experiences hosted by all sorts of individuals and businesses and organizations to just kind of share their passions with people. So these were one-on-one in-person experiences. And that happened for a really long time starting in 2015.
 
09:04
took on a life of its own, got funding. But eventually, with continued ongoing kind of research and listening and evaluation, it reached a point, kind of came to a head right before the pandemic, that, oh, maybe actually some of the existing power structures that led to maybe a sense of not flourishing lives are being replicated now. And so it led to changing again. And that's where kind of Kyrraco came in.
 
09:34
came out, whereas Kiriko now has kind of taken this idea of experiences and opened it up.
 
09:41
So now absolutely anyone can go on a Curiko experience. There is no eligibility requirements. And also anyone can host experiences. So people with and without disabilities both go on experiences and host experiences. And these can be group and one-on-one, in-person and virtual. So it's really open to that. So Rodrigo for instance, not only hosts experiences,
 
10:11
experiences and so does John. Yeah, I want to talk about that shortly as well because it's now did this is obviously an online platform which helps. I mean, let's let's be honest being on the digital world helps people get connected than then just, you know, prior to the year 2000. But did did COVID
 
10:34
sort of make you move faster in this direction. Because that got me that shut everything down shut up. I mean it made people who were lonely even lonelier presumably. But it also kind of required to shut down like kudos was functioning as an in person one on one and it had to stop.
 
10:50
couldn't do that anymore. So in the space of that couldn't happen, it allowed for the ability to try new things. And so in the immediate aftermath, kind of what happened very quickly was something called ComakeDo. Now ComakeDo was a virtual platform which was virtual group experiences. So it was the immediate stop gap. We can no longer do one-on-one experiences in person. How do we still create moments of connection?
 
11:20
And so, Ko-Me-Do happened and that kind of was a stepping stone and it also gave time so that, you know, new things can be tried and Kiriko could be created. But out of that also came an understanding that for some folks, virtual is actually always going to be better and for others it's not. And so, even though we're back to doing lots of in-person stuff, we're never going to abandon
 
11:50
as an option. It's an instant thing, right? I mean, you can set things up and not have to go anywhere, you know? Well, to join virtual group experiences, there's literally no barriers.
 
12:04
You don't actually even need an account. You go on, if you know an experience is about to happen, the times are on there, an hour before, there's a little button that says join waiting room. You click it, you join the Zoom waiting room. That button changes to join experience when it's about to start. You click it, Zoom opens. No need to even make an account. So it's really simple. You've made it really easy to get on board.
 
12:27
At least for, especially for those kind of virtual groups. Now, one-on-ones, even virtual one-on-ones, require an account and they require a bit more of a commitment and finding a time. And we also require you to have an account for in-person, just because we kind of need to know who's gonna be there. Because it really helps the host to kind of know who to expect. And is that free for the user? All Kiriko experiences are free. There are occasionally a few very small exceptions.
 
12:57
to help cover some costs, but for the most part, Curiko is free, free for everyone. So, what do you get your funding? How do you get this thing operating? Yeah, that is the question. That is the big question. So, we get our funding in a couple of different places. So, we have those partners I mentioned before. They are still big kind of funders, and they're still really, really crucial to the day to day, those three disability-facing organizations.
 
13:27
We also get funding directly from CLBC, so Community Living BC. We also get funding from several other organizations, including Frasier Health, but also the Israeli Foundation and some other organizations that kind of change their taste. Oh, interesting. Okay. Yeah. So anybody, I mean, you'd accept donations from anybody who wants to be a part of this kind of thing? Yeah.
 
13:50
Definitely, we would say our one thing is that we're a core part of kind of our values and what makes up is collaboration and kind of, yeah, is collaboration. And so we do kind of make sure that anyone we work with, including funders, shares our values and also that are kind of on board with our power sharing and with the idea of
 
14:20
and making decisions and so that's really important to us and part of also our relationship with our funders. That sounds good. Now let's talk about experiences. Rodrigo, why did you get involved with Curiko?
 
14:36
Okay, it's a little bit of a fun story. I used to be part of a program called Ignite from ISOBC. It helps immigrants develop their business. They offer a webinar of how to incorporate like values to your business. Like it catch my attention and that is where I met Sara and Stephanie. They did an amazing presentation, something like really different from what
 
15:06
to get involved, to know more. They invited me to a small hiking group that was going to go to SFU, if I recall correctly, Burnaby, and I start to realize that it is a place, a community that shares a lot of values that I have, especially enjoying those little moments, creating the opportunity where those moments of connection appear and those little moments.
 
15:36
like start evolving, I participate to more experiences and then I decided to host. It's like, okay, I enjoy little moments, let's maximize the opportunity to have more of those, I want to host. And I host an experience called Little Nomad Adventures. Little Nomad Adventures? Yeah, where we go around different neighborhoods to walk.
 
16:02
We encourage people to take photos and share a little story at the end of the experience. We just want to have a good time exploring, trying to find those little things, paying attention. And so where do you explore? Okay, so far, because it's been almost one year, here is the list. Mont Pleasant, Granville Island, downtown Vancouver, Burnaby, New West.
 
16:30
We just had our first field trip to Steamstone. That was fun. That's where I live. Oh, nice. Beautiful place. Beautiful place. Where else? Yeah, like we have different plants. I try to vary to create those experiences. There are a lot more amazing experiences that I want to create this year. And so those experiences become like vignettes within Curiko?
 
16:59
Yeah, so they become, if you go on Kiriko and you go to explore experience, or I believe it's discover experiences, thanks Rodrigo, yeah, discover experiences, and then you can kind of search by in person or online and different categories like taste, make, explore, connect, but they're all on there. And so they all have kind of information about who's hosting them and what to expect.
 
17:26
And because we always have accessibility top of mind, we also always really describe the environment so people can decide two things. One, is this the right experience for me? And two, what do I need in order to be able to fully participate in this experience? And so, yeah, and so people can find all those and anyone can choose to book and go on any experience. And things like that, though,
 
17:56
something he'd have to get there on his own. Do you have anything that helps facilitate that?
 
18:03
Not directly, but we're a community building platform. And so we're all about relationships. And so we like to develop relationships with people who start joining our community. We encourage people to do a welcome session first, which is always actually with a team member. And so let's say if someone did have trouble getting to a location, like we had someone recently, we had a big kind of launch party for a new, for a new set of experiences in a box
 
18:33
with it called an art journaling box. We had a community member who'd been joining in person for a long time, but they lived quite far away. They had never, in Surrey I believe, and they had never made their way from Surrey to our studio space in Burnaby before, but they really, really wanted to be there. So we worked with them and we actually helped arrange like a car to come get them and really facilitate.
 
19:00
we take it by a case by case basis. We're relationship builders. We work with people and we engage with people. And so, yes, we have certain policies and in general, we don't, you know, arrange transport. But that being said, reach out. We will work with people. Now that sounds good. So you're a bit flexible as what you're doing. Adaptable, always. And so, Rodrigo, you're kind of like a local travel blogger in a sense.
 
19:29
that's come the way this works for you at least? I mentioned it at the beginning I'm a nomad I love exploring I love finding those little places to enjoy to eat and all that and this city all these cities have a lot of that so. Now John how did you get involved in Kiriko? I was introduced to Kiriko from my CCRW job coach
 
19:57
She introduced me to one of Kiriko's coaches. And so what have you done so far with the organization? Well, you started, John, through our coaching program, right? So do you want to tell a little bit about what coaching looked like for you? Just like... Well, I just...
 
20:24
Just talking with the person. It's amazing. And have you gone on Rodrigo's nomadic experiences? Yeah. Where have you been? I think I joined all of them. All of them? Oh good. Yeah. So you were in my hood the other day. That's good to know. Now you went to Steveston. What did you like about Steveston? Ah, the place. Just in general. It's good. What was your highlight?
 
20:54
Well, it's probably a new building, but I saw the... It's weird, but I saw the different save on there. Oh, yes. We were talking about it. Yes, I love actually live across the street from there.
 
21:12
I could have waved. It's nice having a save-on right there for sure. That is a relatively new building. Well, I like that because on the window it said they do DNA testing. Yeah. DNA testing? That I haven't seen. It's tiny little things like that that we find in Little Nomad. We search for those tiny, strange little things, right? No, I live there and I can't say that I've seen anything about DNA testing at save-on. It's right in the window. I'll just get my banana. I just need my bananas and leave me alone.
 
21:42
And so you like gaming tell me a little bit about that what's your favorite video game? That's a hard one Our role-playing games Yeah, like Call of Duty or something like that. Are you into the shooting games? No Mario cool, that's cool. But what do you host with Karako John not quite gaming but kind of similar puzzles
 
22:12
Like actual puzzle making like little cardboard piece puzzle type thing you like puzzles Oh, so you you would have been happy in kovat. We were all building puzzles then weren't we? That's good. So what what size of puzzles do you like to build? Like a thousand pieces two thousand pieces 3d ones. Oh, yeah, those are popular now like the wood ones. We we can build like cars and airplanes
 
22:40
No, it's just foam. Oh, is it foam? Okay, nice. We've been working for, I don't know how many sessions, like six sessions so far in assembling this puzzle, because I've been joining his experiences. For me, it's amazing how like, sometimes we have a lot of progress, but other times it's just a little bit because it's challenging. But then again, you see like three, four, five people
 
23:10
focusing on the puzzle and enjoying and having that. And is that all in person or is that virtual as well? That's in person. Good good. I think when John was thinking about me be hosting I remember you telling me that you wanted you know you wanted to create a social environment where there was an activity.
 
23:35
And that works well? What other things would you like to host maybe? Well, I've been thinking about a video game one. So you could do that virtually online and then just play together, couldn't you? I'm old, sort of, because I like sitting beside each other playing. Oh, so you like it a bit old school that way? Yeah, I get that, I get that.
 
24:02
Now, I guess sort of back to you, Sarah, and Curico being, I mean, anybody's allowed to take part or can take part, regardless of ability, but the driving force has been developmental disabilities. Would that be a fair statement? Yeah. I would say that's really...
 
24:26
where it all kind of started with kudos. But I think a big thing is that in order to kind of address cognitive disabilities and kind of work within that community, it's really important to make sure that we open it up. And so I think a big part of what we're trying to address is not only kind of social isolation for people with cognitive disabilities, but is also looking more at the level
 
24:56
of society and culture, and how can we also play into a little bit of fostering the conditions for more kind of equal relationships, for starting to tackle the kind of inherent disability bias. And a big part of that is creating opportunities for more kind of genuine interactions between people who identify as having a disability and those who don't.
 
25:26
interactions where people are on equal footing, where you know sometimes John is the host and sometimes Rodrigo is the host and kind of creating those opportunities where there really are
 
25:42
kind of genuine relationships. And so yes, I think cognitive disabilities and disabilities is kind of a big part of the work Curiko does, but a part of addressing that is also thinking about society as a whole. And so thinking about fostering opportunities where everyone can work towards flourishing lives together. And where everybody feels included. Yeah. And so what's the response been from?
 
26:12
for lack of a better word, more typically developed people, people who don't have cognitive disabilities. Yeah.
 
26:19
Well, I think, I mean, I think recruitment and getting the word out is always sometimes challenging and we have more success in certain circles and at certain times than others. But also we often have these really kind of beautiful moments of recruitment. To go a little bit back actually to Rodrigo's story is what comes before Rodrigo being introduced to us and me and my teammate,
 
26:49
kind of doing this workshop for Ignite.
 
26:53
was another team member was in an Uber home from a completely different activation. And they said, oh, what were you doing this evening? And they said, oh, I'm working with this organization called Kiriko. And they said, oh, that's interesting, talked all about it. And they said, well, actually, I have connections to this program called Ignite. Could I pass your information down? And then for that, then they reached out to us and we're like, great. So it literally was an Uber ride. But I don't know.
 
27:23
I kind of also pass that to you, Rodrigo, as someone who doesn't identify as having a cognitive disability. What kind of, what's your take? What drew you in? For me, it was a little bit challenging because the way they teach you about that topic in Mexico is really constrained. And they build a lot of
 
27:51
a lot of concepts and it should be done like this. And at the beginning I was really nervous because I was facing something new, something different, right? But after realizing that there is this whole support network
 
28:09
Sara made sure that I felt comfortable and she attended the first experiences just to make sure to guide me to coach me and all that. I started to realize that a lot of those ideas that I I learned when I was a kid or a teenager, they are all dated. It's something that tries to put your attention
 
28:35
in an aspect that doesn't matter, right? Once you see beyond that, and once you realize that it's all about sharing that moment, that experience, being humans again, to be honest.
 
28:50
it all comes natural, at least for me. That's how I feel. That's why I love Curico and being part of this process. Well, that's really nice. I mean, can you speak a little bit about people with cognitive or developmental disabilities in Mexico? How are they treated differently down there? In your experience? I'm not trying to say the whole country under the bus.
 
29:11
While I was in university, I did my social services in a school that focused on helping kids with learning disabilities. And that is where I came in contact with two realities. If you have the money, you have access to the resources the kids have. But if you don't have the money, you are confined in this little bubble that a lot of people ignore.
 
29:41
Um...
 
29:42
I interacted with a public system school that they were fighting a lot for resources. I met a lot of really dedicated people that were trying to do their best with what they had. But you could see that, again, it's this little box where they put all these ideas and the kids and all that, and the society tends to ignore that. So it wasn't, from your point of view, it's not a very inclusive approach to people? No.
 
30:12
nowadays and maybe depending on the socio-cultural level there is more inclusion, but overall my perception is that we still have a lot of work to do. Yeah, I mean DDA has been doing its thing since 1952 and you know we were all about community living. We, DDA and its founders were instrumental in getting rid of institutions in BC. You know back in the day when, in the 40s or the 50s.
 
30:42
If a parent, if you had a Down syndrome child, the doctor would often say, just put them in an institution and forget them, forget they even exist. So that's been a 70 year struggle. And I feel like there's still more work to do today. And that, you know, when I hear about CURA code, it's like that's even taking that inclusion into another step and really driving it. Would you agree with that? Yeah, definitely. I think that...
 
31:09
CURCO kind of understands that there is a big importance and a big role in a lot of the programs and services Kind of in the lower mainland that really support people with disabilities But at the same time there needs to be more than just that there needs to be things that happen in the spaces in between Yes kind of programs and services and that's where we come in as kind of making it this kind of
 
31:39
outside of those spaces. Because Curiko is not a program. Curiko is not a service. It's kind of a, it's like a lifestyle. Yeah, well, it's a community. It's a community. So what is Curiko doing to do that outreach? Is there been a media push? Is there been anything to broaden the horizons of the organization? Yeah, I think we're constantly trying new things.
 
32:04
We often do, we often show up at farmers markets and community events. We were at, I mean that's how I met you, Heaven. We were at the Community Inclusion Festival. We do a lot of events like that, but also, you know, we go to the newest farmers market. We often do little pop-ups ourselves.
 
32:31
I think our big thing is we're constantly just kind of trying new things and seeing kind of what sticks. That's kind of our whole kind of mentality for everything is iterate, iterate, iterate. So keep trying. And also, we're really, really excited right now that we're also in a process of growth. So we currently kind of operate across the lower mainland, but we have just started.
 
33:00
the slow process of eventually expanding across British Columbia. I would imagine there's no limit to scaling this. I mean you could do it anywhere you want. Yeah, yeah, that's kind of the beauty in that although it's based in in-person experiences, because
 
33:18
it is a website that kind of grounds it, it does mean that you know we could have Kiriko wherever. We recently did a process of just internally our team.
 
33:30
doing a lot of internal visioning, and it started with a blue sky thinking. Absolutely anything could go. And we had hundreds of sticky notes all categorized around this. And there might have been one that said, Kyrgyz-Ko-Hawaii. Can I work there? Yeah, maybe not the most realistic or immediate of the goals that were up there on those sticky notes.
 
33:56
But yeah, who knows? Yeah, I mean, the sky is literally the limit. Now you talked about Comake Do and Kudos. What is Real Talk and Mirakai? Yeah, so those are other things that came out of this same research and development process. So the same four partners, the same three, Disability Facing and Aim With Forward. So Real Talk is a
 
34:23
separate kind of initiative that came out of this similar research process. And it is, so Real Talk is an initiative that connects adults with cognitive disabilities with opportunities to learn about and explore sexual health and sexual identity. So there's all sorts of different kind of offerings where adults with cognitive disabilities
 
34:53
can learn about sexual health, but also, you know, explore their own identity. Coming out of this idea that, you know, all adults have a sexual identity, whether they're sexually active or not, but often people with cognitive disabilities don't necessarily get always given the information they may need to go and kind of pursue that. And also given the space to explore things like sexual identity, queer identity.
 
35:23
And so in its essence, like beyond doing, you know, fun things with Rodrigo, I can imagine there being lots of like teachable moments, like things that, you know, if you wanted to make, show people how to bake a cake, like you could do inclusive experience like this. So you could have this whole repository of just fun stuff and learning things as well, right? Well, that's pretty much essentially what Curiko is.
 
35:52
And so all these things are we have all these sorts of different types of experiences. So we in fact, we have a whole category of advocacy experiences, you know, whether that is, you know, we have a group that meets once a month on Fridays to really focus on, you know, what is it that we care about with self advocacy? We've also done partnerships with disability who have poverty and participated in their,
 
36:22
you know, learn how to talk like a self advocate, like experiences in partnership with them. But then we also do all sorts of kind of, you know, make, taste, explore. So yes, we've done cookie making. We've done, we have one up a one-on-one virtual where you can learn how to make microwave mochi. So they really run the gambit between, we also have like, you know, one where you can explore or get kind of an initial exposure to
 
36:52
ASL. So it really like some of them are very much learning, learning based.
 
37:01
But kind of the difference between maybe a class that you would sign up for is that these don't have like really set outcomes where they're only a success if you learn how to make a, b, and c at the end. There's these expectations. It's more like the goal in of itself is to create opportunities for different types of connection. Will you often also learn x, y, and c
 
37:30
yes of course but it doesn't necessarily have the same measures of success if that makes sense. Yeah no it's an experience like an experience
 
37:42
beer making, but I'm not gonna go home and make beer necessarily. In fact, we have, coming up at the end of March, a cocktail making experience where you can come in person and learn how to make cocktails. We may have had a beer tasting in partnership with Canucks Autism Network that happened a couple weeks ago. That sounds good. Now, John, are you taking part in stuff like that? Are you sort of just sticking to some of the things that you like? I do see.
 
38:12
Some that I'm interested in, yeah. Yeah. So how long, again, have you been involved with Curiko?
 
38:20
How's it? I'm trying to remember when you first like, got involved with Tamsin. I know, I don't think it's quite as long as Rodrigo. I think maybe like eight months now? But you, you, I think that makes a great point. Like you get to really choose for yourself and I think that's a big part of Curiko. Like doing the things that excite you and you don't have to do everything. Yeah.
 
38:46
Just anything of interest. Would you do the beer tasting? Yeah. I would do the beer tasting. I'm not going to lie. Yeah. Well, and I know.
 
39:00
and stop me if you don't want me to share, but I know you kind of said at the beginning when you first started Kiriko that you were really, really shy to go and join in-person things and do social things, but that you wanted to. But now you kind of join all sorts of stuff. Well, you're here to talk about it. I think that's a huge step for a lot of people. Doing podcasts makes people nervous. So the fact that you're here doing that is like...
 
39:28
really really good if you ask me. Built comfortability. Yep. It's all about building your comfortability, absolutely. In terms of meeting people one-on-one, one of the questions that I had is how do you deal with any sort of safety concerns? I think, so safety is of course important.
 
39:50
And I think a couple things, especially with in-person experiences and one-on-one experiences, we do have kind of a couple safety things in place. The first one being that hosts do complete and submit a criminal record check, complete with a vulnerable sector check.
 
40:10
We kind of have that. We also do site visits. So we do that to check for kind of, you know, potential safety concerns. But primarily we do that so that we can best describe the environment so that that kind of is a big part of the safety. People knowing what to expect. People knowing this place is really, really loud. So if you're sound sensitive, you're really gonna wanna make sure you're bringing a good pair of headphones. So all of that. But that being said,
 
40:40
is something we think about and we're concerned about and is important. One of our core underlying values is that we believe that love, belonging, and purpose, kind of all the conditions to have a flourishing life, are as equally important as safety and shelter. And so therefore we do want
 
41:10
that it never becomes something that we try to mitigate risk so much to the extent that it prevents opportunities that will allow for novelty and even discomfort. Because another one of our big values is actually this idea that novelty, so just the sense of newness and strangeness, and also discomfort are really, really...
 
41:36
important and what we call yummy nutrients for learning and growth. And so we want to make sure that we think about safety but that we do not got so bogged down in this idea of needing to ensure safety that we're not actually allowing moments of strangeness and learning and even discomfort. And so that means it must be fairly easy to sort of, lack of a better term, police the content
 
42:06
Yeah, well, it's not like Snapchat. No. So no one puts up. You can't just go on and put up an experience. You can go on making a path count. Create a click, the create an experience button. It will guide you through. You can even it will direct you to book a time with a curator. You can skip that. But even if you go through the whole process, you create an experience. It doesn't get published.
 
42:32
It goes to the team and the team will reach out to you and a big part of our work is collaboration and co-creation. And so you will reach out to us and we'll work together. I mean, we've had...
 
42:46
not a lot, but we've had some people reach out and submit stuff in there. And we never just look at something and go, oh, well, never. We ask questions and we want to, you know, create an opportunity to kind of to kind of explore what that could look like. This person never reached back to us. They were probably trolling us. But a while ago, we did have someone submit an experience.
 
43:14
that they called the fetish experience.
 
43:18
and we reached out to them and we're like, we're like, we'd love to learn more. Some of the things you suggested, like we don't think would work, but we want to know kind of why you're interested in doing this. And maybe there's a way that we can promote exploring of that in a way where everyone would kind of feel, feel heard. Like maybe there's a way, maybe not with the images you, you, you, you posted, but there's a way. They never got back to us. So we were being trolled,
 
43:47
one of those moments where internally we're like, oh, what do we do with this? And we're like, no, we reach out. We try to have a conversation. Yeah, you know, you never know what happens until you take a look. I suppose. And who knows? Like, it could be something worth exploring. It could be a very good learning experience. Who knows?
 
44:04
compliment a little bit something that was interesting for me during the process of publishing an experience. I'm talking about an online experience is after you go through the process that Sara shared there is a tasting session where Sara can compliment if I miss something, but a Curico team member, a taster just scheduled a session with them and he or she will give you
 
44:34
feedback regarding your online experience on things that you can improve or to consider and on that and For me that is really helpful just to make sure that I'm aware or like I always like to Polish things up right sure and feedback is really important to achieve that and I was happy to hear that There are tasters ensuring that online experiences Meet that
 
45:04
It's not a requirement, but that idea of creating a wholesome space or a safe space. Yeah, it meets a certain threshold that you want to meet. Now, like with your pieces, like you meet up with people. How many people do you generally go out with when you do your nomadic thing? Um, between three and I think seven is the biggest so far. And so does then you do that in person, you go do your thing.
 
45:33
Are you recording any of that? Does that then become an on-line experience? Can you link the two kind of things or is it just an in-person thing? Okay, when the weather cooperates, it's in person outside, there is a meeting point, a starting point, and I will share an ending point if it's different.
 
45:51
At the beginning, we always ask, are you comfortable of me taking photos of you and sharing those photos on social media, on printing and all that, just to share them with Curico? If they say yes, awesome. If they say no, no photos. And the photos that we take during the experience, everyone is like, you can decide if you want to share them with other people or if they're with you.
 
46:16
That's it. If the weather doesn't cooperate, it's indoors in the studio and we have a couple of variations. Chocolate is from around the world. That's a fun one. Curious ingredients like things that we're not used to mixing like vanilla ice cream and soy sauce. Surprisingly delicious. Like I did not want to try it, but amazing. I, you know, for my own history, I spent many years working in the fine dining industry here in Vancouver.
 
46:46
We're in Richmond, but in Vancouver, and I worked with a chef who made roasted garlic ice cream. And it was divine. It was, sorry, total tangent here at the moment. No, no, no, but it's the core, right? Like Sarah was mentioning, creating an environment that is safe, but it also allows you to have that sense of adventure and risk. Like, yes, when we are tasting food, always ask about allergies, consider that.
 
47:16
that join the experiences have the option of, hey, I want to try these weird things that Rodrigo are presenting to me or no, I don't feel comfortable and no problem. Like we move on. So, yeah. No, sounds good. To return to kind of what you were asking with the content. So there was when Kiriko kind of first started, so as the iteration of Kiriko, we did have an experience type called video.
 
47:43
So it could be footage taken during experiences or it could be things filmed exclusively to live as videos. Now we had several of these, some of them professionally produced, some of them not.
 
48:00
but this is something we no longer have. We still have a YouTube channel. You can watch our old hip hop videos. They're quite fun. And some of the others. But this is something we kind of, again, kind of learned, reiterated, and moved away from.
 
48:16
because it takes a whole lot of time and a lot of resources to create video experiences. Yeah, that could be time and money as well. Yeah. It's not cheap to do. Yes, agreed. Very, very true. And the truth of the matter is that there's a huge market for that that's already being done. YouTube, you could search for anything and everything. And so yes, we put our own Curiko spin on things and kind of the accessibility.
 
48:46
focus.
 
48:48
but we were really finding that people weren't necessarily watching them, that there wasn't that same level of community being created in them. So we kind of decided to move away from that and focus more on actual live experiences. So focus on experiences that happened either live, one-on-one or as a group virtually, or in person, again, one-on-one or as a group. So all of our, you know, because we do do one-on-one experiences
 
49:18
group experiences. But the one thing you had mentioned way earlier, you asked about Meraki. And so Meraki... Again, another word I'm pronouncing incorrectly. Yeah, another word we've cut. I want to actually think is a real word, but in a different language. But again, kind of a word we've repurposed, so totally understandable.
 
49:41
But Meraki was boxed experiences and it happened back when it was Kudos and it wasn't directly connected to Kudos but kind of. It was a separate thing and the idea that they were complete experiences, everything you needed to...
 
49:57
have a moment of novelty to try something, to try an activity, to be exposed to something, but connected to a real person who carefully curated it. And so there would often be, there'd be all the supplies you needed to try something, but there'd also be, you know, links to videos, maybe audio clips, or instructions with both words and pictures, all this stuff. And the idea was for people that were more intimidated by going out to a physical location
 
50:27
a virtual, this would be a way to get started, to try. And also it could be something that people could bring home, they could do with other people in their lives, support workers, all sorts. So that is something that we have carried over to Kiriko. So although we do not have video experiences anymore, we have kept and grown on this idea of boxed experiences. So it's no longer called Meraki, it's just called Boxed Experiences. It's just a type of experience on the platform.
 
50:57
but we've played around with it and we've now also played around with this idea of different ways to engage with boxes. So we've got coaching boxes as well as boxes that are more tied to individual house. And now actually starting next week, we have started our very first ever box cohort.
 
51:19
So this is a box that people have signed up for. You could sign up to just get the box or you can sign up to join the cohort. And the idea is that the same group of people, it's 10 people this time, are going to join a virtual experience and it's only this 10 people. It's closed once it started. The same 10 people with the exact same box of supplies are meeting for six weeks.
 
51:45
and getting a chance to dig a little deeper, to get to know each other a little more, to get a sense of knowing who to expect, but also with the same materials, getting to really explore a topic.
 
51:59
an area over time and kind of build on the learning. So we're exploring with this. And so we're starting off, this one is art journaling, which is a virtual experience we have been doing for over a year now. It's actually co-hosted by myself and my mother who lives in Calgary, which is why it's virtual, because we co-host from a distance. But we've noticed that there's kind of a limit to how much kind of week on week we can build on it,
 
52:29
that there are always being different people, which we wanna maintain, it's important. It's what makes group experience, group virtual experiences so low barrier. But.
 
52:40
we want to play around with this idea, what if everyone for sure had the same supplies? Everyone had paint, everyone had Modge Podge, everyone had, you know, access to even stuff like bubble wrap to play around with. So everyone with the same supplies and we're the same group of people for a set period of time.
 
53:01
And so again, we're always kind of experimenting and playing around with formats. And so, yeah. Well, that sounds good. Because you've also said the website also mentions working with schools. Can you tell me, expand on that a little bit?
 
53:15
Yeah, so I don't actually know where you got that. So I'm sure, I believe you, I'm sure it's there somewhere. And I think our big thing is we definitely, we definitely, we say we're primarily for adults, but that being said, we definitely also are open to young people and even families. Occasionally we have some experiences which are 18 plus or 19 plus, like all of our, you know, lovely,
 
53:44
beer tasting and cocktail making mentioned earlier, but but we definitely have gone to a lot of like transition fairs and stuff like that where where we've kind of worked with and promoted with with younger people but also But also that's something that in the past both with kudos and now with Kiriko
 
54:14
high schoolers or university students are also really interested in volunteer opportunities that are not cookie cutter, are not you know here is a list of tasks to do, but where people get to design it themselves and volunteering with Curiko as a host is a really great way for young people to volunteer where they're sharing their own interests. You've been, sorry you've been with Curiko how long
 
54:44
Personally, not that long actually. I'm trying to do the math quickly. I think the easiest will just be to say in July it will be two years. Two years, that's long enough. I mean, have you seen it expand in that time? Are you watching this grow a lot? Yeah, definitely. I think it's really, really exciting to be a part of an organization that.
 
55:09
really is constantly reiterating and listening and learning. We've currently been in a process of kind of engaging a range of community members.
 
55:19
in evaluation where we seek to understand all of our members and where they're kind of at and where Kiriko comes into play. I've also been involved in scaling, which is incredibly exciting to see how Kiriko might look a little different when we go to, let's say, up north in Prince George. That's fantastic. Now, like, when it comes to the things that you do.
 
55:45
Rodrigo, would you might be doing things that cost money and if so where do the funds come from?
 
55:51
Okay. Actually, on my end, like we have done both. Usually, I focus like most of the times is exploring only transportation. I suggest bring some change for food in case you want to grab a snack while we walk. And for me, it's just being practical, right? Like we are on the move, we are exploring, the goal is to enjoy, right? We are not going to a fancy restaurant or no. But yeah, in the other cases, like for instance, chocolates from
 
56:21
curious ingredients. Curico sometimes.
 
56:26
helps me cover the cost of the chocolates for instance. Other times I bring the ingredients from like my fridge because I have them so no problem. For Steve's done that was our first field trip. Kuriko rented a car so they offer two options like you can meet us there no problem or you can meet us at the studio and you only pay I think it was ten dollars and join us on the
 
56:56
So I think that is good to try to create that balance because yes There are some things that you want to try that will cost a little bit of money but it's also important to keep it accessible right because For me and I maybe I'll be a little bit greedy saying this but I believe that for Curico It's also important to Open experiences for everybody Now like let me ask you a more of a personal question
 
57:26
as an immigrant, how does this system work in your life? Okay. I love it.
 
57:36
I was stuck on a loop since I worked from home. It was really easy. I wake up, emails, dishes, calls, emails, work. What is it you do for a job? OK, I created my own company. We help purpose-driven solopreneurs create and develop their own presence. So those people that are alone versus the world, they have this business idea, and they have no idea where to start. I help them with their own presence.
 
58:06
websites, automation, online payments, all that stuff. And I enjoy that. I like it, but that is work. And I learned that I also need to pay attention to the human part. The little nomad that lives in my heart. So Curico was great for that, because he gave me the option, like the excuse to go out. And not just be on the weekend watching movies and just going outside to the grocery.
 
58:36
and go back, it's dangerous. And it's like I ask you this because my wife's an immigrant and I sort of so I understand the the you know the loneliness that that can bring when you have moved to it you've decided to move to a place and you don't have your tribe with you you don't have your friends or family around so that can be really difficult and that's why I just sort of asked how Curiko works.
 
58:58
in that respect, you know, it's not just something for people with developmental disabilities, it's everybody who can need that outlet, really. Absolutely. They have some amazing values and that...
 
59:10
allow me to identify with them and create that sense of belonging. It's like, okay, I've tried going to bars, I've tried other type of events, it's not the place for me, for my personality, right? And I found Curriculum, and it was like, okay, this is amazing, like-minded people doing different things, creating, evolving, like, yeah, so it works great for me.
 
59:38
Yeah, I think I'd love to just, to kind of throw it, I guess, to you, Rodrigo and John, and just kind of, I mean, we kind of were just getting at it now, but I'd love to know maybe even in one or two words, John, like, what do you kind of think for you the impact of Kiriko has been, or why do you think you kind of still join?
 
01:00:07
Oh, I kind of wish this was around 20 years ago for me. Because it helped with my social aspect. It helps you get out of the house? Yeah.
 
01:00:26
I saw you nodding here when Rodrigo was talking about kind of feeling stuck and like a way to get out. Is that kind of something maybe you have felt a little bit too? Probably, yeah. I think that's something we all feel in our life from time to time. I know I have, yeah, absolutely.
 
01:00:52
Sorry. Go ahead, go ahead. I was just gonna say, how would you then kind of summarize for yourself, Rodrigo, the kind of impact? For me, it's reminding me what is to be a human again, to have that sense of connection, of putting feelings and emotion at the middle versus chasing the money and other things, right? So it has allowed me to.
 
01:01:19
Remember that those connections are really important, like meaningful connections. That's pretty deep. Yeah. That's a pretty good impact statement. I mean, and this is why I love the work I do, because as much as it is my work.
 
01:01:42
It is also something that I too equally find I get so much out of, just like you two have mentioned, where I get this sense of connection and community and genuinely making relationships with people in the course of my work, which is not something you always get in every work you do. You know, does that mean that sometimes I get text messages at weird hours? Of course, but it also
 
01:02:12
have friendships and people I care about and it really is two-way relationships. I didn't ask you this in the beginning about when I said ask about yourself but is that part of your background and your education in this kind of stuff?
 
01:02:27
Yeah, I think everyone who works with Curiko, if you ask the question of background, you will get a different answer, which I love. But for me personally, I come from the social sciences. So I have a master's degree in socio-cultural anthropology. And then outside of that, really kind of focused on kind of ethnography, but from a bit of an academic lens.
 
01:02:57
guides of Canada at first, kind of with their advocacy department and also with their research department and then a couple other small things and got led to then doing community engagement with the Canmore Museum and various things and it kind of, I always kept returning to how do we actually take research and working with people and kind of connect them more.
 
01:03:25
So the research and the engagement, where it seems very connected and where research is also kind of connected.
 
01:03:32
to forward thinking, to doing something, and not feeling so extractive. And so, kind of finding where I am now, I'm finding this kind of my background in doing a lot of kind of community, engagement and community focused work, but also a background in social science research, for me has kind of been a beautiful marriage of things. So you're kind of where you should be? At this point you're gonna stick around? I mean, yeah, it sounds cliche, but yes. That's funny.
 
01:04:01
I think we're pushing over an hour now. This is probably my longest podcast. And I appreciate it again, appreciate the effort and not coming out and we're talking for 15 minutes now. Hey, look at the time. Awesome, yes. And a huge thank you to you Evan again for inviting us.
 
01:04:20
And for instead of it just being kind of one person from Curiko kind of allowing a group of us to come and talk. Well, thank you. And I think this actually kind of worked and I promised to have some new gear next time. We should do this again. Once this expands again. I mean, I think there's 19 people working for Curiko now. So not employed by Curiko. So we include on our website, on our kind of team page, we also include some people.
 
01:04:47
who do more kind of a leadership role in the volunteering. So like moderators and stuff. So we do have a mixture of people who work full-time, part-time, and we also have people who work on more of a contract basis like our tasters. So very, very kind of casual.
 
01:05:07
but we also have a lot of volunteers that play very crucial parts. So I don't know, it's kind of hard to pinpoint our team in terms of numbers. How many people actually are involved online? How many clients, I guess, as you would call them? Yeah.
 
01:05:25
we call them community members and that is a very constantly changing number because people engage again different times different amounts but we do have we do have hundreds of people with accounts okay like I think last time I checked I mean this is not the most accurate number but like a thousand ish okay but those are accounts so different levels of use well we'll help you boost
 
01:05:55
Yeah. Okay, well you've been listening to DDA's Encouraging Abilities podcast. We've been chatting with Sarah Knowles, John A., Rodrigo Galvan, all from Currico. Currico is an online platform which, I said it wrong again, didn't I? Currico. Yeah, it's Currico. I kind of like how you say it. I'm going to keep that in. Currico, it's an online platform which can also mean real world interaction to help connect people through experiences.
 
01:06:25
In particular, people with disability in the disability community who might not, who might find it difficult rather to cultivate a community of their own. So all you can find, all you need to know at CURICO, that's C-U-R-I-K-O dot C-A. Thanks again for you all for being here. Yes, thank you for having us. Thank you. I am your host, DDA Communications Manager, Evan Kelly. See you next time.
 

The Life That's Chosen Me - From Russia With Love

Making personal sacrifices for your partner's career is one thing, creating a home in several countries while at the same time caring for a severely disabled child is another. We caught up with Rachelle Rosolofo-Czerwinski to talk about her new memoir, The Life That's Chosen Me - From Russia With Love.
 
TRANSCRIPT
 
The Life That’s Chosen Me – From Russia With Love
 
00:07
It's time again for DDA's Encouraging Abilities podcast. I am your host, DDA Communications Manager, Evan Kelly. Joining me today is Rochelle Rosa I'm hoping I'm saying that correctly. You do. That's a difficult one. Now Rochelle has an amazing story to tell, which she has brought to life in a new memoir called The Life That's Chosen Me From Russia With Love. It is available on Amazon and it's a very well written and fairly quick read if you're interested in picking it up.
 
00:37
travel writing, part diving into the culture and language of other countries, part learning to do that with a family of four where one child has a severe developmental disabilities. Rochelle was born in Madagascar, raised in France, and then married a German Canadian who worked high up with the United Nations, and it's a job that took her husband, Chris, to East and West Africa, Italy, China, Egypt, and then over to Russia.
 
01:02
To me it sounds like an amazing life, but of course there are hardships and difficulties along the way because it's not just about traveling freely, it's uprooting, it's making big changes, it's moving for a partner's profession, it's creating homes, even learning new languages, all with a child who needs extra care. Rochelle and her family, which includes her two sons Mike and Nicholas, now reside in Vancouver and we're of course happy to have them back here. So thank you for joining me today, Rochelle. Thank you, Ivan, for having me.
 
01:31
Now, it's clear you've led a very interesting life. Before we talk about disabilities, not everyone can do what you did. That's getting up and moving for a spouse whose job has changed, especially with an entire family. How difficult was that for you? To tell the truth, at the beginning, it was not. I just took it in stride, you know, and here I am, a new bride, and my job was to follow my husband.
 
01:58
I just thought when I came from Madagascar that we would settle in Canada. So little did I know that six months after settling down in Vancouver, my husband announced that we go into Africa. And from there, you know, after Africa it was Italy, and as you mentioned, then after Italy it was China, and then Egypt, and finally Russia. And I think in Russia I started feeling a little tired.
 
02:26
Globetrotting, I guess, as it were. Yeah. That must have been, like I said, it's not just traveling freely without kids when you're young or something like that. It's literally recreating home wherever you are. I mean, is that a difficult thing for you to do, or do you just take that on as a challenge?
 
02:47
I took that on as a challenge, but as time went by, it became more and more difficult. Like you're losing your friends and you have to look for new schools and create new homes. And of course, you know, with a child with special needs, and our son Nicholas had severe, significant special needs, it became harder to find therapies for him.
 
03:11
physiotherapies and speech therapies and this and that. So it's difficult enough if you stay in the same city like Vancouver, but imagine if you have to move country and not just country, but continent because actually change continent each time. Yeah. Well, exactly. And obviously there's some cultural things we can dive into as well, but you also mentioned that you've learned multiple languages. How many languages can you speak now? More or less fluently, five I think. French is really my first language.
 
03:40
I came to Vancouver, but because we did everything in English, I kind of picked English. I did learn English in school. And you may still hear a little French accent here and there. Oh, of course. No, more than a little. More than a little? Okay. And that's been like 20 years in Vancouver now. But you also, can you speak Chinese?
 
04:09
I did study Chinese for a semester in post-secondary and that was one of the most impossible things I've ever taken on. So I doff my hat to you to be able to do that. And did you learn a bunch of Russian then as well? I learned Russian during our two years in Russia. Russia was not as easy for me. I think if you read the book, I mentioned that.
 
04:37
I have more difficulty when it is a different alphabet as well. When it is a Roman alphabet, French and English share the same alphabet. Most European languages like German, like Italian, which I speak too. French. We share the same ABC. Yes, the romantic languages, right? Right. But when it came to Russian, they used the Cyrillic alphabet.
 
05:01
When it comes to Chinese, they use those hieroglyphs, those pictograms, and so then it becomes more difficult. So in those countries, I learned more to talk and to understand. I didn't put too much energy in learning to read and write because I knew it would take me years, and yeah, so yeah. So was it a bit of a relief to get back to Canada? Absolutely. And when did you come back to Canada? What year was that?
 
05:29
So I arrived in Canada from Madagascar in 1984 to get married and we started our Nomadic life soon after that and we came then back for good to Canada in 2005 now is your husband still working in Russia or is he for here for good now to be in Canada He's back in Canada for good. Yeah. Oh, that's good. And is he still working with the United Nations here? Or is it something different he's doing? Well, he does some consultation work. So
 
05:58
at least we'll be based in Canada, which is providing more stability for the family. But then he did some consultation work in Africa, in Asia, and yeah. Now, tell me about your sons. Michael, he's your typically developed son. He must be, I'm guessing, pushing 30 now? You're guessing right, he's 36. And Nicolas.
 
06:23
our young adult, but still a big baby in many ways. And Nicolas is now 35. Oh, so they're, yeah. So what is, you talk about in your book about Mike, trying to adapt in a variety of different schools in different countries, which must have been a challenge for him at the same time. I was thinking, when I was reading this book, how he probably looks back on that with a certain fondness and he's got this incredible life story behind him now. So what is he doing with himself now?
 
06:50
So now he works in, he used to run his own company. And then when COVID hit, you know, that kind of took a dive like many small companies. And now he's working with a concrete making company in Coquitlam. Nice. Yeah. Nice. And so how's Nicolas doing? And Nicolas is well settled in his own life. He doesn't live with us anymore. It does, it cannot live alone.
 
07:18
because of his special needs, but he shares a house with another person with disabilities and with a team of support workers. So very, very much like what DDA does for our clients, but like you mentioned, you're working with Spectrum organization. And how is, does he like living on, I guess I should say, how long has he been living on his own? And so I think he started living on his own in 2009.
 
07:46
That was a big transition for me because as I said he's still like a big baby and of course for a mother to let go of a baby no matter his size or his weight or whatever, he's still a baby. And so that was that big transition for me to let him go, yeah. And does he enjoy being apart from you? Is he enjoying his independence? Yeah, he has a fairly structured life. He goes swimming on Wednesday, Science World on Thursday, music on Tuesday.
 
08:16
a library on other days. I think he's going to outlive all of us. Well, that's good. I mean, it sounds like he's really enjoying his life. Let's go way back though. Like when you first knew that Nicholas was gonna have problems, how did you feel about that? And how did you deal with that? So I remember that clearly, that was in Africa. We were in this small African country that's called Djibouti. And...
 
08:44
And Djibouti is one of the hottest countries in the world. It's like 45 degrees Celsius at night. So during the day it's even more. And so the habit of people there is to have a nap. Otherwise you cannot survive. Nobody works between 12. It's the siesta, I guess. La siesta, exactly. Everybody's away and have a nap.
 
09:09
between 12 and three, and most organizations would only open until one, and then everybody's off until the evening. And I remember clearly one time we were having a nap, and my husband got up and he told me Nicolas is doing some funny things. And, you know, I was a new mom, Nicolas was two months old, maybe three, I said, oh, you know, he's just a baby. And my husband said, I think he's doing really some strange things. And so finally I got up.
 
09:38
And yeah, and they had no experience at all about seizures, but he was having seizures, yeah. So that was quite a shock, yeah. And that sort of, and then at that point you knew like, okay, there's some developmental things going on here. Exactly, so luckily, my husband had more experience in seizures than me because he had volunteered with L'Arche, which is a big organization, and they are everywhere in the world.
 
10:06
and he had done a gap year after UBC in France. And so he had been exposed to people with disabilities and he told me we need to take him right away to the doctor and I'm like, oh my God, are you sure? And so yeah, wait. And then after that, it went really fast. Three days later, we were on the plane to Paris to a pediatric hospital.
 
10:33
stayed there for three weeks and for me it was the worst time of my life having to come to terms with the diagnostic that you will be very impacted and the doctors in France said you know we don't know how it will develop but we just know it's going to be.
 
10:51
long, you know, life lasting and stuff. So the big question that I think is interesting about, you know, your book is what is it like moving from country to country that is a child that has more needs than a typically developed child? It's very challenging. As I said, we need to find therapies and that was my job. My husband's job was, you know, he was moving into a new office, getting to know his new team and
 
11:20
And for me, my job was to find a home and hire people and find help and find schools. And at the beginning, as I said, I kind of just, okay, that's my job. But as you get older and you move from country to country and this is your fifth country, and Nicolas was getting older, and I really kind of missed some stability in his care, in his life, instead of uprooting.
 
11:50
everybody every three to four years, yeah. Now, like what I kind of want to touch on is because my executive director Alana Hendren has actually written a book about her experiences traveling the world and seeing how people and how organizations come together to help people with developmental disabilities. It's not published yet but she's working on it. So like when you go to someplace like Djibouti and you have a child that has developmental disabilities, how do you feel like you're treated?
 
12:19
What's inclusion like in Djibouti? Yeah, so that's a very good question because every country was different. I wrote a book about Russia because Russia was kind of the worst country and it was good that in a way it was the last country after Russia I was done, like I wanted to go back to Canada. Djibouti was our first country with Nicholas and Nicholas was a baby. And so, you know, as baby.
 
12:47
you don't really see much difference. He was very cute. He was healthy, apart from his disabilities. And so we were not treated any different. There was one time where I had to take him to a hospital in Paris. And the local daycare was very nice and decided to take Michael early. He was younger than what they would have taken.
 
13:15
But because of the situation, I was away with Nicolas for three weeks and my husband had to go to work. And so yeah, so people were nice and trying to help. And our neighbor was a physician. And so she said, don't worry, I'll keep an eye. You know, I'll bring soup to you, too crazy if you need. Or, you know, so the community kind of rallies around you, which was nice, yeah. So what was, and what about China? Like how old were you, was Nicolas, when you were living in China?
 
13:45
So China was 94 to 98, and Nicholas would have been 10. It would be six to 10. And in China, we had a wonderful household helper. Her name was Mrs. Goh, and I really saw her as Nicholas' second mother, because she was so nurturing towards him, and that was one of our best countries. So China was not.
 
14:14
very good for people with disabilities, people who look different. There were a lot of orphanages in China that had children that families could not keep. And many of those kids were kids with disabilities. And some were girls because in that time, there was a one child policy in China, so people could just have one child, and because of their culture, they'd rather have a son. Yeah.
 
14:43
Right, so it's kind of sad. Exactly. And so when they have daughters, then they knew they were not allowed a second child. So they would give the baby girl to orphanages in order to have a son or have a chance to have a son. So China was not the best country officially with our government policy. But you find everywhere good people. And Mrs. Guo, our nanny, was one of those people.
 
15:12
And do places like Djibouti and China, it's one thing to be able to hire support, which not everybody's going to have, of course. Yeah. But are there programs that you can enroll kids with disabilities into? Are those readily available or is that difficult to find or is it just not supported? They were very difficult to find. They were practically non-existent.
 
15:40
So when we were in Egypt, when Nicolas was young, he could still manage to go to regular schools with a helper, like an SEA, Special Education Assistant. So that's what we did for a while. But then as he grew taller and older, it was really hard to leave him in the preschool when everybody was two years old and he was six. And so that was kind of challenging. Yeah, I guess so.
 
16:06
So yeah, we had to be creative and in some countries I had to help create a school So that Nicolas could have a place to go during the day. Can you tell me a bit about that? About creating a school so like in Egypt for example, I was looking for a school. We were living in Cairo
 
16:26
And there was no school in the neighborhood, and so I talked to people, and one lady said, you know, I'm thinking of creating a school. And I said, please, please, would you, you know, I could help you, I could help you financially to get it started, or I could give you books and for Nicholas, or activities and stuff like that. So that woman, she had typical kids.
 
16:55
and then she had Nicolas as only one and only special needs child. So that was in Egypt. That was in Egypt. You must have felt a little bit like DDA back in the 60s when we created the first special needs school. I think so, yeah. You're a ground breaker in your own right. But again, you're right, I forgot to mention Egypt. How was the community rallying around you there? Did you feel supported? What's inclusion like in Egypt?
 
17:25
In Egypt, I was involved in creating the first directory for special needs to help families like mine who had to go from zero to find out where is the special needs school and what services do they deliver. And that's one thing I'm quite proud of.
 
17:53
So my name is on the first page of that book. It's quite a thick book. I did it together with an NGO. And so hopefully it's still around, and I think it is, and they probably keep updating it when new services come up. So it had the list of schools who were inclusive, who accepted people with special needs. And it was also a list of, say,
 
18:20
physiotherapist, speech therapist, and speech therapists who could also do it in French or in English, apart from Arabic. And so it was very good. So this is kind of a support manual that you helped put together? Yeah. And that was in Egypt? Yeah. Oh, fantastic. That sounds really good. By comparison, when you come back to a country like Canada...
 
18:45
How does that feel? What are the differences that you've noticed being back here? I felt so relieved. So for the first time in our life, we had stability in the care. And so for the first time, things were organized. Nicholas was enrolled in Eric Humber, which was near Oak Ridge, where we lived.
 
19:10
So we had the support of a social worker, a case manager, the school pediatric team, so there was physiotherapists, so that felt so different and so much better. What about the overall levels of acceptance in Canada? Like, I mean, having some support and some inclusion, but I sometimes wonder...
 
19:39
walking down the street in other countries, if people, you know, look at you weird or cross the streets or something like that, how does Canada feel against these other countries? Canada is one of the best. I remember in China, Mrs. Guo, my second, you know, the second mother of my kids, I remember one day she was taking Nicholas outside for work and she came back really fast and she was crying.
 
20:07
And so I asked her, what's wrong? What's the matter? And she said someone on the street had told her, why do you take care of someone like him? He's a waste. He's a waste of resources. And she was so shocked. And she came back right away, and she was in tears. And then you've got to know, of course, that China has 1 billion, 300 million people to feed.
 
20:36
And probably some of those people see people with disabilities as a waste of resources. And when the government is not encouraging the support for people with special needs, then of course that's how also the population see it. So it's very sad. Yeah, it's unfortunate. There's going to be those people, you know, that just don't support it and are, you know, it's...
 
21:03
It's weird, but so in spite of feeling really great and at home at ease and accepted here in Canada, what do you see that we can be doing differently or better? So Canada, as much as it's one of the best countries we've lived in and we still live here, and I'm so grateful to be here with the family after I've been lived in five and six different countries. But obviously nothing is perfect.
 
21:32
And I wish families would have more choices about options, just like everybody else, that they would have options where to live. And I'm talking about their children with special needs. Like sometimes due to funding constraints, they tell you, okay, we're going to find a home-share provider for your child, but that's going to be in Burnaby. And so if you live in Surrey or in Richmond,
 
22:01
of course naturally would like to try to be close and it's hard to have those choices. I also heard recently that the government funding to CLBC is going to be more challenging to get as they get more people every year transitioning from high school into young adulthood. And...
 
22:26
That saddens me because it's really hard on families when school is over and they have those six hours of school taken away and it's like, okay, what do we do now? And often it's nothing. The answer is there's nothing until you have funding put in place and you have the support in place and the care workers and it takes a while. When Nicolas graduated from high school, it was in 2008.
 
22:56
And I was one of those families. When high school was about to finish, I asked the principal, by the way, where does he go from here? What does he do from here? The principal said, I honestly have no idea. So that was quite disheartening. I actually was the first coordinator of a transition group.
 
23:24
called Vancouver Parents Transition Group, which is still going on now. And one of DDA staff, Terry Schenkel, was one of the strong, really one of the best advocates for families that he would, he helped me get Nicholas income assistance. He really went all the way, like, okay. So it was great to have.
 
23:52
Yeah, he was very good to be part of the DDA team. He's retired now. But often, I hear for families, that is sort of a difficult time. There is that transition period between high school, where you age out of childhood programs, but you're not ready for adult programs yet. And whereas DDA, we have lots of day programs and things that people take advantage of. And we've got a very robust art program with our instructor, Kim Almond. And they'd
 
24:20
produce some amazing, amazing stuff. So I'm not sure what Spectrum offers. I know he's in a group home with Spectrum, but do they have all the same sort of programs that DDA would offer? Nicolas, because of his disabilities, is kind of challenging for him to fit into a day program. Like he has to have his two hours nap after lunch. And so what he does is more like a home-based program. Like we customize his program for him. So.
 
24:50
As I mentioned earlier, he goes swimming once a week, and he goes to Science World once a week, and he goes to the library, and he has music, and so, and I think he has a good life, yeah. So he really likes a lot of structure? Yeah, I think he likes that. At the same time, as I mentioned in my book, sometimes I really wish he could have more fun. He's 35, and he's a guy, and then...
 
25:17
And sometimes, you know, his brother jokes with me, he said, mom, maybe you should take him to a pub and you guys have a beer or. Yeah, why not? Exactly, why not? So I'm like, okay. I can recommend some good ales, that's no problem there. Now, moving on to some of my other questions here, like I don't have the lived experience you have.
 
25:42
You talked in your book about a time when Nicholas fell in the bathroom and hurt his, hurt one of his teeth. Did he knock, actually knock the tooth out? Yeah, he did. Ouch, ouch. Oh yeah. And that was in Russia, was it? That was in Russia. And in spite of the fact that the caretaker was there and you talk about guilt having not been around yourself. I am a parent. I understand guilt if something happens to a child, not so much now they're, they're older and they can look after themselves. But
 
26:10
But is that guilt harder when your child has developmental disabilities and doesn't grasp certain situations? How do you deal with that feeling? Yeah, it's harder because of course they are more vulnerable. Nicolas doesn't speak, he's non-verbal. Like I said, he's really a two-year-old in many ways. And so obviously he wouldn't know whether a situation is dangerous and he wouldn't know how to call for help. And so in that situation, I believe...
 
26:39
It was with a babysitter who maybe, you know, I could have trained her longer. And so that's where some of my guilt is that I was too much of a hurry to go to a cocktail party or to a dinner party. And so I was, okay, so she had two sessions training, she should be good to go. And obviously that was not enough. So she left Nicolas standing in the bathroom.
 
27:08
Well, she went to get a diaper. And Nicolas doesn't have a good balance, but maybe she was not really aware of that at the time. Maybe I did not stress that. It's hard for me to remember. But what happened is that Nicolas was standing around in the bathroom on his own, and somehow must have lost his balance, fell, and knocked his tooth on the sink of that bathroom and lost one tooth, yeah.
 
27:38
and that must have been painful. Oh yeah, I've been there. It is painful. Now let's go, I wanted to touch base a little bit about Russia because you mentioned that that was sort of the worst country when it comes to inclusion. Even diversity, you talk about living in this area where they had these neo-Nazi rallies and stuff. That sounds scary to me. Like how did you cope in a country like that?
 
28:06
Yeah, it was scary at times. I felt vulnerable, I felt isolated. Because in Russia, when a child is born with visible disabilities, like Down syndrome or like any other encephalopathy, the government tells, encourages the family to give the child away, to give that baby up.
 
28:28
to the government. And then those babies are somewhere in the countryside in Russia. So you don't see many of them in the city. The two years I was there, I've never seen one. And I think that's one of the reasons when people saw me walking the street with Nicolas, they were all staring, really staring.
 
28:49
at you, like with those big eyes, and like, who is she? What is she doing here? And that was what I was telling myself too. What am I doing here? No, everyone is staring at me. So yeah, it was quite difficult. And then we went to this orientation meeting as a newcomer and this really nice Russian man is there and he says, okay, don't do this, don't do that. Don't bring presentiments to as a no-stay gift because that's what we use for funerals. So, you know, kind of the cultural things.
 
29:19
And then at one point he says, oh, and around the 20th of April, don't leave your place if you're a visible minority. And I know, so there were a few of us from Africa, from Asia, and we kind of looked at each other, and finally one brave one raised her hand and say, why is that? And the guy say, oh, it's because the 20th of April is Hitler's birthday. And if you kind of...
 
29:47
dark skinned or they look different, it's better, you stay home. And I'm like, what? I honestly, it was, I really felt like, oh my gosh, this country is not for me. I mean, it sounds completely backward to me. Yeah, absolutely. And so the Russian government really encourages it to give up kids and what? They just take them to these institutions out in the countryside? Yeah, yeah.
 
30:12
Any idea about the conditions of those institutions? I'm scared to even ask that question. Yeah, so when I looked into those institutions and you see babies in their cribs with no human contact at all because there's not enough staff or and so quite a few of them got adopted.
 
30:32
by Canadians or Americans. But I feel for the families who had to give up their babies because they were kind of really put under a lot of pressure. The doctor would come and talk to the mother and say, your baby is better. You forget about your baby.
 
30:52
That sounds, I mean, again, that's why DDA was created. You know, back in the 40s and 50s here, that's what doctors would tell parents, you know?
 
31:02
put them in a institution, forget they even existed. And now, 72 years later, we know that community living and inclusion works so much better. Early intervention works so much better. And we can bring these people into the community and they can have happy and joyful lives. Absolutely, yeah. So everything that you've been through, to me, sounds immensely challenging.
 
31:28
But even in the book you had ideas of adopting a third child. I guess that didn't pan out. But I kind of keep thinking, wow, you want to do even more? So instead you got a dog, a nice big dog named Shona. I guess I'm sure she's no longer with you anymore. But you're that kind of person. You just want to take on challenges, is that it? Well, you know, it's a good question, because when you have a child with special needs,
 
31:57
and you have another child who is typical. And I had always felt that I was raising two only children because they were so different. And so, and I felt sorry for Michael that he didn't really have the sibling he wanted because Nicholas was non-verbal, so they could not communicate. They could not really play much with each other. They did at the beginning when they were both very young, but as they both grew up, Michael.
 
32:26
soon enough realized that his brother was not a typical child. And so I felt the idea of the third child, I think, was more for Michael than for Nicholas. As you mentioned, I had enough to do with Nicholas, but I felt somehow I felt really sorry for Michael that he didn't have a sibling he could have had if I had a typical child. And that sort of leads me to another question. There's lots of studies that show...
 
32:56
siblings of people with developmental disabilities develop more empathy and compassion. Do you see that in Michael? Yes, I do. He has this elderly neighbor next to his flat and he's really helping her out. He asks her, do you need anything? Can I do shopping for you? So I see that in him and yeah, I'm happy to see that. That's good.
 
33:23
So at the end of all this, what made you decide to write a book, a little memoir on this? I felt that not many families decided to have the life we had, like moving from country to country, so let alone with a child with disabilities. And so at the end of our nomadic life in 2005, after I kind of helped to get Nicola's life settled.
 
33:51
I felt I really need to write a book about our life. There is a quote from Maya Angelou where she says, there's no greater agony than carrying a story inside you that is still waiting to be told. And I felt that way, like I need to tell those stories. And so what did you hope to achieve with this? Raising a greater awareness about people with disabilities and their families.
 
34:20
and if possible helping in a way in some way or another to improve the lives of those families and of those people with disabilities. You want to encourage people, families of any shape or size to travel around the world? I mean, COVID and technology means we can all work remotely in many ways. So would you encourage people to do that? No, not really. Just being honest, don't do it. Yeah, don't do it.
 
34:50
So actually, I was telling myself if someone were to tell me now, would you do that life again? I think I would shoot that person. To put it bluntly. To put it bluntly, I would look for a gun somewhere. Now one of my last questions I want to ask you is you said in the book that Nicholas is your biggest teacher. How so? Because in his own way, he taught me so many things. I had to learn on the job.
 
35:19
to be a mother of a special child. And I never had that experience before. I was never exposed to people with disabilities before Nicolas, so that was really for me a big thing. But I think we kind of grew up together. Nicolas needed care, provided care, and he made me understand vulnerability.
 
35:45
He made me understand resilience. So with him, I grew up to become resilient. I became resourceful. He made my life bigger. And for me to get to know other families was one of the best things for me because I didn't feel alone. And through Nicolas, I made some of my best friends for life and so I'm grateful.
 
36:15
That's really good. Anything else to add today? Well, I think I would really like, I still hear so many families living in really dire situations because they don't have enough funding for the kids. And I especially feel for aging parents. I am an aging parent. I turned 65 not long time ago.
 
36:42
And I still have things to do for Nicolas and with Nicolas, on stable housing and a circle of good friends around him that will keep an eye on him. So as you approach the end of your own, as you are facing your own mortality, to leave behind a child with severe disabilities, is weighing on your head, right? On your mind. It would be, absolutely, I think it would be. Yeah, so those are those.
 
37:12
those worries and I hope the government will make special provisions for aging parents like okay now that you've reached 70 you shouldn't worry anymore. We're going to take care of your child. And I know I eventually I need to go and CCLBC the funding agency to increase Nicolas funding because we are still taking care privately for some of his needs and just the idea of going to see them.
 
37:42
honestly makes me stressed, makes me feel stressed a little bit because they're going to say no, and then I'm like, no, I cannot take no for an answer, I need to insist again and because, you know, because I'm getting old and I don't want to worry about him while I get older. I don't want to worry about him when I'm 80. And that's the thing too. Like there are many families with, you know.
 
38:11
family members who have disabilities who are not well off and where do they get the money?
 
38:17
to help their children like Down Syndrome for example. You don't get a lot of funding for Down Syndrome. So, you know, there's people out there creating advocacy groups today that are, you know, screaming for funding whereas other, you know, disabilities do get funding. So, it's, we just got to keep pushing. We just got to keep knocking on those doors and making sure that voices are heard and money is there. So. Yeah, very true. So, as I said, Canada is.
 
38:45
one of the best countries. So we have in Canada, we have our DSP, which is for the long term saving. We have lots of school inclusion, we have inclusive education that is not available in many countries. So there are some good things, but at the same time, there are still some gaps to be filled. And what you said about families, I think here, like everywhere, families would really be the backbone for change.
 
39:14
We need to keep pushing, we need to keep talking to our MLA, to our MPs, to all levels of government that they need to do more and they need to do better. Yeah, absolutely. Well, I think that about covers it. You have been listening to DDA's Encouraging Abilities podcast. We cover many topics that affect the disability community, whether it's about inclusion, accessibility, and now traveling the world. You'll find it here. Our guest today has been Rachelle Roso
 
39:44
Chowinsky, I got it again. Thank you. Author of The Life That's Chosen Me from Russia with Love. It's her memoir about living in several different countries and moving around with her husband, Chris and her two sons, one of whom has severe developmental disabilities. It is available on Amazon if you wanna check it out. Rachelle, thank you for joining me today.
 
40:05
Thanks for listening, see you next time.
 

Vital People - A Career in Caregiving at DDA

Ratnam Mathur is one of our valued group home managers who, like many staff at DDA, found a calling that pulled them off a defined path and into a career that meant so much more than money and fancy titles.  
 
TRANSCRIPT
Vital People – A Career in Caregiving at DDA
 
00:10
Welcome back to DDA's Encouraging Abilities podcast. I am your host, DDA Communications Manager, Evan Kelly. Today we're talking about caregiving as a profession. To me, it's a profession that we as a society often take advantage of. We don't look at it as one of those jobs that you shoot for necessarily. It doesn't have the cache of doctor, lawyer, CEO, or what have you. But these jobs are vital, not just to the people DDA supports. They don't always come with the highest wage or even respect, which is wrong in my mind.
 
00:39
caregivers are vital to everyone in the literal world. At some point in our lives, if not now, at some point we will all need care, whether it's at a home because of illness or injury or a seniors home or a group home like the ones DDA operates, we are all going to be touched by this need and this profession. So I wanted to shine a light on one of the dedicated employees here at DDA and talk about who they are and what they do and why.
 
01:04
Joining me today is Ratnam Madhur. She is a long time employee of DDA and manages our Curzon Group Home that five people with developmental disabilities call home. Many of the clients we support in our 19 homes in Vancouver and Richmond have been with us for decades. I mean, they literally become family. So Ratnam, thank you for joining me today. Thank you, Evan. Thank you for inviting me. So just right off the top here, what got you started in this line of work?
 
01:32
Prior to coming to Vancouver, I taught in a school in Germany that had many kids from refugee families. They were from Albania, Romania, Turkey, and other European countries. Some kids were separated from their parents and were waiting for their arrival. A social worker was assisting the kids in their different needs. These kids were going...
 
01:59
through struggles to adjust a new culture in their relationship to other students. In their learning and doing homework, it was obvious to me that their families too were going through difficulties at home. Trying to cope with their status as a refugee, I spent time with kids and listened to their stories. I did not speak German, nor they spoke English, but working with some very simple words.
 
02:27
in English and German, and with the help of a social worker, we made enough connection to understand what was going on in their lives. These kids needed a lot of help to cope with pressures of studies and at school, as well as in dealing with their trauma and mental health challenges. It was challenging for me to win their trust and to create a helpful environment.
 
02:55
so that I could help them in their studies and sometimes their families at home as well. This first-hand experience for about three years gave me a unique perspective on empathy and value of community service. So when we moved to Vancouver in 2003,
 
03:18
I wanted to continue in this field at schools as special needs teacher, but my work permit did not allow me. So how come the work permit wouldn't allow you to be a special needs teacher? Because I was on NAFTA, I have a US passport, and they don't allow to work, the spouse was not allowed to work with kids and schools. So much so that I could not even take the courses. Really? Yeah. So take me, so you're in Germany at this point.
 
03:47
And you're helping kids with, no they were developmentally disabled? No, no, actually they called those schools as international schools and mostly that international is refugee kids from all.
 
04:04
over neighborhood countries. What sort of challenges did you face there with, like, I mean, obviously there was some language difficulty. Absolutely. They are also learning German, and you cannot survive there without learning Deutsch. So that was it. And you know, kids are really good at picking up the language. That was not an issue. The issue was the all struggle, they have come through that. Because from family, when people are arriving,
 
04:34
It's not the whole family coming together. It's one at a time. So that is a challenge. Sometimes kids come and the parents come later. So the social worker plays a really very very important role. So that must be some emotional challenges to deal with as well. Absolutely. Emotional, mental, like you know, to adjust with the culture and with the kids and you know, to be just normal.
 
05:00
And did you find that it was a very successful system over there in Germany? How was it similar to here? I think I don't know the system here for the refugees so much, but I was surprised. They have a very good system there.
 
05:14
a lot of resources in the school, especially for the kids. I don't know all over how they'd go, but working with this social worker, I came to know that they have a lot of resources. They help with kids like, you know, throughout their journey till high school, till they...
 
05:35
complete that. Where did these kids mostly come from? Romania, Kosovo, Albania, all neighborhood countries. Must be sort of interesting seeing the political upheaval in all these countries. Absolutely, absolutely. I feel sometimes in Canada we're quite isolated and protected. Yes, we are protected, that's true.
 
05:59
I feel safe to be here. Absolutely it is. Sometimes we take that for granted. You came from Germany to...
 
06:08
the United States and then to Canada? No, actually I got, I'm from India. I got married there. My husband was in Yale at, in US, Connecticut. Oh, he went to Yale? Yeah. Oh, wow. So my, so I stayed over there. And then I'd say about five years we moved to Boston and there I started working in multicultural school, in the bank.
 
06:38
moved to Germany. It's all because of my husband's job.
 
06:42
Okay, and how long did you live in Boston? That's interesting. Oh almost nine years really cuz I my my family spent a year in Boston This is an aside on this podcast now He's any of my dad today a second master's degree at Harvard when he was with the government Saskatchewan other so yeah, my husband was working for Harvard too. What does he do? Oh, he does research Okay, he was doing research that time nine years in Boston. What do what part of Boston did you live in? Oh, we were suburb Norwood
 
07:12
Almost 45 minutes from the main town. We were in Belmont, Massachusetts, near Cambridge. Those are very expensive, couldn't afford that. It was good. My memory was quite young, grade 4, grade 5, so my memory of Boston is quite good. Anyway, back on point. So you got to Canada and you wanted to keep working in this field.
 
07:42
What is your education and what is your actual expertise? I have done my masters in commerce and I have done my double graduate in English literature and B.Com English literature. Yeah Right that right then all my education is done in India
 
08:03
And yes, when I, you know, that is what I tell my kids too, that you never know what you want to be. Like, you know, after graduation, after this, there was some hollow in it. Like, you know, I worked in Boston, I worked in the bank. And, but still I need to know what.
 
08:24
So when I got this opportunity in Germany, working with a social worker, that time I felt that, yes, this was it. More of a synergy. Yeah. And so, I mean, you did your commerce degree and English literature, I mean, wow, you've got some education behind you there. And you worked in the bank in Germany, that was the only time you sort of used that particular degree? I...
 
08:52
I used that in Boston too, my degree, because over there I was actually looking forward to complete my CA. My credentials were all approved, so I was about to go into that direction. Oh, I see. But I think you raised such a good point, because about, you know...
 
09:15
what it is we educate ourselves with, what we think we should be chasing versus what we end up wanting to do. And so what...
 
09:25
I mean, you helped the refugees in Germany. And so what made you keep wanting to do this here in Canada? Yeah, when I moved in Vancouver, I was looking into the same field. But because of some restriction on my work permit, I could not. Then I started exploring the nonprofit organization. Like, you know, and, but with that, I want, because my kids were in school,
 
09:55
to get a full-time job. So during that time, I got employed by Indian Consulate. I was working there. That's here in Vancouver? That's here in Vancouver in downtown. And then I saw this posting, DDA posting. And I applied for it and that's what I got. What was that posting? Oh, it was Grandview CSW.
 
10:21
in a Granview Day program. That time it used to be called. So CSW was a community support worker, and that's where it started. Was that a full-time job when you started? It was, yes, it was a full-time. And was it what you were expecting? I mean, had you worked with people with developmental disabilities before? Not directly, but during this I had learned a lot about it. And when I started...
 
10:48
working. I even picked a few courses online and, you know, update, upgrade myself. Did DDA support you through that? Absolutely, it did. I think that very year I was very lucky to get involved with direct support worker course. That was our pilot project at DDA and that helped me a lot too. Oh, that's good. And so, I mean, when you applied for that, did you know much about DDA at the time?
 
11:18
But as on work, I started. But you knew, you knew this is the direction you wanted to go. Absolutely. That time I was really clear. Yes. I mean, yeah, that's it. I mean, you're the kind of people we want. People who make that decision in life, it's like, I'm here to help and give back. And so how? Sometimes I think that it's too late, but never late. Too late for what? What do you mean? I mean, too late to, at that age.
 
11:47
to see what you want to do in life. Yeah, well, you know, as long as, I guess, I guess as long as you're not dead, you can make a change. That's so positive. And so with that said, now, how long have you been with DDA? Almost 19 years this year. 19 years, so we're coming up on 20 years. That's unbelievable. Yeah, yeah. And so I guess, why is this line of work important to you?
 
12:16
Well, I have always found working with people with disabilities deeply satisfying to me. I want to be their voice where they don't. To help them think positively that they too have potential to learn new things, take part in activities just like you and me, and to be happy in exploring and enjoying everything in life just like others.
 
12:41
The joy of seeing our supported clients gaining confidence day by day, learning that new skills and enjoying themselves fills me with great satisfaction. So and that's it too. I mean you get that feeling of doing something good for the community, doing something for people who can't speak for themselves all the time. You know, we're all about...
 
13:09
self-advocacy and making sure that, you know, one of the big tenements of DDA is making sure our clients...
 
13:17
make their own decisions and make sure they're driving their own path. So being part of that must be, even from my position, it's a very good thing and a very good feeling. So given your experience of going back to Germany, going through all of your other jobs, what do you feel like DDA is doing right? What can we improve upon?
 
13:42
First of all, I will highly suggest everyone at DDA to watch our award-winning movie, Doing the Impossible. It's a deeply personal journey for many clients and their families. At that time, they were under institutional care that had its own damaging effects on the families.
 
14:06
After watching this movie, we can see how far DDA has come in its 72 years. We personally connect quality of service to the clients.
 
14:18
care we provide and witnessing happiness in the lives of people we touch every day. Yeah, that's the movie she's talking about rather the documentary is doing the impossible. It's something the Communications Department put together last year and it's since won three British Columbia Leo Awards. It really is.
 
14:38
the, it's what's called doing the impossible, the story of the developmental disabilities association where one woman, Leo LaPurdy took, you know, decided to buck the trend and keep her child out of institutions. You know, and 72 years later, here we are, you know, 500 plus employees and institutions in British Columbia are gone and community living is here.
 
15:08
DDA is all about and what this line of work means and the changes it can actually bring. So tell me about the people at Curzon. Tell me there's five individuals you support? Yes all five individual quite different in their age and cultural background. Very loving, full of life, music, dancing, partying is what they like, playing sports.
 
15:35
but also having a big heart to give back to their community. Big message they give out to the world is respect, love, peace, and they enjoy together. They are always ready to reach out to help others, whether it's shortage of food at the food bank or a natural disaster like floods or calls for peace in the world.
 
16:00
They are always ready and willing to help out in their very own way. If you walk in Richmond around Curzon neighborhood, you will very likely notice a client's name on Adopt the Street polls and even Richmond Dykes. They also volunteer at Meals on Wheel, delivering food to the seniors. One of the residents advocate for recycling used items.
 
16:26
Whenever he buys new clothes without being asked, he will get the old ones out from his closet to donate. A big, strong personality. So is that a big part of DDA programming? I kind of cloister myself a little bit at head office doing my thing, but when it comes to our clients in the community,
 
16:52
there's a big drive to get them involved in that stuff. I mean, they want to anyway, but I like, I find, you know, like with the food bank donations, there's, you know, that's sort of a cyclical, I guess seasonal as well. Yes, you know.
 
17:11
Clients are very busy in the community. They know what is happening around. That's the part our staff plays a role in our client's life. They communicate, they talk, they help them to read the newspaper, help them to understand what's happening around the world. When they are watching TV and news, they will ask question. Like, you know, I remember the first time
 
17:41
No.
 
17:41
fundraising for Pakistan flood relief. That was our first one. And that happened through the client. He was watching movie. He saw the person. He saw a kid who they showed that he's looking for food to eat or drink water. And he's the first thing came out from him is, oh, if he's here, I will take him to McDonald's and I will buy his lunch. So that spoke so
 
18:11
and we thought, let's think about it. And we talked to the clients and they were very eager to do.
 
18:20
a fundraise kind of thing. That time, I think Canada doubled whatever you give a dollar and it gets doubled. So that really was a big help. So how many times a year do you take your clients to do this kind of community effort stuff? Oh, we are always open. There is always something or the other going on. And they are a very big part of the city of Richmond, because city of Richmond also does.
 
18:45
you know, a call out for help for cleaning or for donation or, you know, helping seniors. So we are... Is that how they sort of the Adopt-A-Street? Was that you mentioned the Adopt-A-Street program? That was totally from Curzon. We explore for the voluntary work what they want to do. And it was a client's goal to do something in the city. So we explored on the website the voluntary work.
 
19:15
and that's how we got involved with that. And I noticed you do, you make sure you guys do a lot of stuff with Henry Yeo? Oh yes, yes. He's the MLA, correct? He is the MLA. So he knows our clients very well, and in fact he has just sent a city of Richmond, has sent individual name, thanking.
 
19:35
for the work they are doing. And that, like recently that's been, you know, helping cut back invasive plants and stuff? Yeah, yeah, they did that. And then helping the new mom with the food, you know, baby food and baby diapers. And they did a lot of work.
 
19:56
Now there's five people, they're obviously, they're individual, big individual personalities. What are some of the things that you come across in the house? Is it just like living with a family? Absolutely. Do they get into arguments and bicker with each other? How did it come for you and me? I'm still, you know. Let's not go there. That's true. But yes, that typical family and you know, sometimes working in the community.
 
20:26
that they all get bound to each other. They know each other so well. You, sometimes if a non-verbal client, if his jacket is given to somebody else, if the staff doesn't know him enough, they are the first one who will check and they'll say, no, that's not his. They are very, very sensitive and they are very attached to each other.
 
20:51
though they have their ups and downs. But you know. Now, you know, one of the issues with people with developmental disabilities, sometimes just behavioral issues, it's, is that, um,
 
21:03
difficult or easy to overcome in this setting? It depends on individual residents. And for all the behavior and all, you know, we have a support system with the help of seniors and mentors and assistant directors. They all, as a team, sit together, help with the GPs and, you know, professionals and sit together, talk, make a plan. So every behavior, we have a protocol
 
21:33
follow and there that's where we come to train our staff to follow the protocols and policy and procedure. That sounds good. Now how long does this particular group of five people occurs on? How long have they been living together? More than 30 years.
 
21:54
But there are some very young clients who have joined them. So the senior is almost 68 years old, and the youngest today, her birthday is, she is 27. So there is a big age gap. But that helps them to be, like, you know, to be bond with each other more. Yeah, that's nice. I mean, it's always nice to have, you know,
 
22:24
inspirational involvement would be kind of nice. So going back to sort of talking about this as a profession, what are some of the things you don't like about caregiving? What's lacking in society in your mind? I often find this occupation being labeled or tagged as caregiver, which I think actually undermines and undervalues this profession.
 
22:53
We ought to be considered as community builders and the life coaches that deserves far greater respect and encouragement from the society. I would also like to see men joining in this profession, like in nursing. Yeah, absolutely. You make an excellent point, community builders, and what was the other one you said?
 
23:19
Life coach, life coach, that was the one. I mean, that's great. I mean, we, you know, we do a lot of recruitment drive and stuff like that. And, you know, I post a lot of stuff on social media that's, you know, that talks about exactly the job you started off with, you know, community support worker. Maybe it's time we start rebranding that as community builder and life coach. Because it's precisely what you do. That really defines it a lot more. And in terms of the men, you're right.
 
23:45
I mean, let's be honest, historically, caregiving is always seems to fall into women, right? But this is a very rewarding job and we look after men, you know? Like, I don't know what the percentage of is it like a 50-50 split between men and women in our group homes? Do we try to do that? I, we don't basically think of doing that 50-50, but we are not close to. So as they come,
 
24:15
I think DDA is very open for male or female. We just want more male to join the sector. But as far as the clients though, like what's... Oh, clients are absolutely like, you know, it's a very mix. I can't say I don't know the numbers 50-50, but we do have women and male. Yeah, of course. And it's important to have, you know, men in the house as...
 
24:41
The female and male together, like you know. For staff, and I mean because they need that guidance and that mentorship regardless. So what would you say to men who are you know thinking about doing something like this, or even haven't even thought about doing something like this? Well I will say welcome, welcome to this real world. We need your presence, strength, and care to make a world a difference.
 
25:10
At DDA, we provide adults service basic training program. It's a very useful resource and training tool to get you started. This program was initiated by our executive director, Alana Hanren. I'm one of the instructor to teach this module. It prepares you to start working, making it easy and comfortably paced with you.
 
25:35
You should have no fears as we are always there to help, guide, and support you. So, men are welcome. Yeah, and like we talked before, there's lots of internal support, training. Absolutely. You know, I mean, you know, not to mention the other benefits of working for DDAs. We have a defined pension. We have a really good benefits program. What is the hardest thing about what you do?
 
26:04
Well, the hard, a constant need for advocacy for clients' rights and respectable inclusion in the communities. For example, it's not easy to access certain public places like beaches and washrooms. We also lack enough available funding to support staff to accompany the clients during overnight hospitalization. When needed. Oh really? Yeah.
 
26:33
Fortunately, through the advocacy work over the years, there has been a lot of improvement in overcoming these barriers. And the stigma has also declined, but it is still ongoing hard struggle in this profession, I think. Now, when you talk about stigmas, I mean, obviously you're out in the community a lot with the clients from Curzon.
 
26:58
Do you experience that stigma in the public? We used to a lot. And now also, it's not gone away. We can see the eyes rolling or somebody getting up and moving from that place. Oh, really? Oh, yeah. Yeah, yeah. We do see that. But not as much what I used when I came here. So now it is.
 
27:25
little bit better, but it hasn't gone fully. So from 20 years ago, you're seeing an improvement in society's acceptance? Yeah, of course it is. But it's still a long way to go. Yeah, inclusion is, that's an ongoing battle, absolutely. So.
 
27:50
A lot of people in this line of work have a personal connection to developmental disabilities like a lot of people on our board of directors have family or friends who have developmental disabilities. Is this true anywhere in your case?
 
28:05
No, not in my crea- no, no. It's not true in my situation, but there is a significant number of people who are struggling to accept the fact that they are parents of siblings of the special needs person. Yes, there may be people who are joining this field of employment to explore and to learn so that they can care for their loved ones better and meet their needs more effectively.
 
28:35
offer some great training programs and opportunities at work like orientation session, shadow shifts, e-learning, all of which is designed to help staff to learn and grow while they are on their job. And do you find the DDA is very welcoming for for new ideas and
 
28:57
things you can bring to the table and just improve the lives? Absolutely. From the time I have joined, any ideas, anything to describe that what is happening in the neighborhood or to changes, they are always open. So tell me about the job from an emotional point of view. Can it be difficult on you personally?
 
29:16
Well, this profession can be quite stressful at times, emotionally challenging and difficult. So what causes that stress? It's a work. It's not easy to, for example, motivating a client. Every day, motivational that, you know, giving yourself to that particular job is a lot asking. It sounds very simple,
 
29:46
lot of giving. So your clients, I mean, they can be as stubborn as the next person, so getting them to do something is difficult. We don't want them to do something, but helping them to, for example, getting up from the bed. Some of the clients are in that, that they don't want to get up from the bed. Oh, like my teenager. But there is a time for
 
30:16
health, we need to do that, right? So we get trained to help them to motivate and those are all things it requires. And it sounds easy but it's difficult. Well, I can imagine it being difficult because every client is different and they're gonna need different motivations and different ways to get them going. I mean, that said, do you think...
 
30:43
this job certainly requires a kind of person to have that kind of perseverance, to have that kind of patience and motivation in themselves. Absolutely. Needs a lot of patience and you know, but it said that we do encourage our staff members to learn about self care.
 
31:01
importance to educate themselves, available resources and help line. We support staff to be vocal at how do they feel, to share their concerns. We can get them the appropriate help they need.
 
31:18
And that, you know, again, we've got, you know, connections with our benefit programs and their family health plans. That's all in place. We're very, very well supported. When I see pictures of videos of Curzon Home, because you're one of the Group Home managers that sends me tons of content, which I love, I can't help but think...
 
31:42
how fun the job can actually be and where it doesn't actually feel like a job. I look at this and I go, they're all sitting around the dining room table drinking wine and eating Thanksgiving turkey. It's like, this feels like a home, which of course is the goal. But how do you accomplish that feeling from your perspective?
 
31:58
Well, that is our goal, right? To provide continuous support and assistance that fosters respect, independence, inclusion, and a higher quality of life for the individual that we support. My aim.
 
32:18
personally is to help them realize fulfillment in their lives of organizing necessary care resources and encouragement to reach their potential. The other goal is to train team staff so that they can continue to give their best care to our supported individuals as well as themselves. My final question, anything else to add to someone thinking about this line of work? Because it's like I said early on, it's...
 
32:47
This is vital work. This is really important, whether it's, because the last stats, the Canada numbers from last year said 27% of Canadians identify with having a disability, whether that's physical or cognitive or what have you. So having support at any point in our lives is absolutely vital. So what...
 
33:13
What else can you add? What else can you say to someone thinking about getting into this line of work? Yes, I wish more people can experience working with people with autism and other disabilities, to get a firsthand knowledge of what it means to face barriers and challenges, to live every day. Like I said before, this profession is not for everyone, but...
 
33:39
to others who genuinely want to reach out and serve, who are caring and compassionate, I will definitely encourage to choose this line of work. Now, age aside, would you do anything else at this point in your life? Wow.
 
34:00
I haven't thought about it. But I think I will continue to, as long as I can, to be in this field and support my clients. And we are so happy to have you. We're so very proud of the work you do, Ratnam. We have been chatting with DDA group home manager Ratnam Mathur. She has been telling us about her profession as a caregiver here at DDA. I said rather a community builder and life coach. Ratnam, thank you for shedding some light on who you are and what you do. And I know we all love working with you. Thank you.
 
34:30
Thank you, Evan, for this opportunity. You have been listening to DDA's Encouraging Abilities podcast. You can find us pretty much anywhere podcasts are supported, Spotify, Apple podcasts, Podbean, IHOP radio, Google podcasts, and more. See you next time.
 

Freeing Teresa - A Chat with Authors Franke James and Her Husband Bill

Freeing Teresa, a new book by Franke James, her husband Bill, and Franke's sister Teresa talks about the challenges a family can face when it comes to the care and consideration of a family member who has developmental disabilities. On one side, is the freedom to choose, on the other is family dysfunction that is likely beyond repair.

Healthy People - Longer Lives

He's a man on a mission. Meindert Hinlopen hopes to level the playing field when it comes to personal training. His company's focus is to help people with developmental disabilities get in shape and find their passion. Say hello to Spectrum Health in this Encouraging Abilities podcast!
 
TRANSCRIPT
 
Healthy People – Longer Lives
 
00:05
Welcome back to DDA's Encouraging Abilities podcast where we talk about anything and everything related to the disability community, primarily the developmental disability community. I am your host, DDA Communications Manager, Evan Kelly. Today is actually part three of our Accessible Sports series. We've done podcasts with BC SportAbility and Sirota's Martial Arts Academy. Today we're talking with Meindert Hinlopen. I hope I'm saying that correctly. Who is...
 
00:33
getting people with developmental disabilities involved in working out and working with him, a personal trainer. Now, Mindert is a graduate of SFU, he's a registered kinesiologist and NCCP certified coach with Special Olympics here in BC, specifically with basketball, hockey and track and field. Now, he spent the last few years on the care support team of Ben who has now joined us.
 
00:58
Ben was Mindert's first client. They started doing workouts to help improve his strength for Special Olympics floor hockey because Ben loves hockey. Who doesn't? He also collects hockey cards. We can talk about that in a bit. Now they progressed from doing the workouts in his house to going to the rec center. Now Ben is 26 years old. Mindert and the team are currently working with him to get stronger and faster for his Special Olympics.
 
01:27
hockey season. So, Mindert and Ben, thank you for joining me today. Hi, Evan. Thank you so much for having us on. I'm excited to get to talking and talk a little bit more about myself and what I do and Ben will say hi as well. Hey, Ben, nice to meet you. Nice to meet you. So Mindert, what got you interested to be involved so much in the developmental disability community?
 
01:53
I really owe it actually initially to my older sister. She was volunteering for Special Olympics when I moved out to Burnaby and she convinced me to come and volunteer for Special Olympics Burnaby as well and from there I kind of just
 
02:13
grew a lot more in the community, volunteered for a number of years at Special Olympics, and then about three, four, five years ago. So I kind of wanted a bit of a change in my current career and decided I wanted to try a unique opportunity where I'll have the chance to work with someone that I haven't worked with before. And that was an awesome chance for me to kind of dip into.
 
02:34
the developmental disability community where I get to work with someone that, you know, I haven't had a lot of life experience with, and I've absolutely loved it, and I will continue to do it probably for the rest of my life. So how long have you been working with the developmental disability community now? So I've been volunteering with Social Olympics since 2015, and then I've been working with Ben for three years, or how long? About three years, yeah.
 
03:04
So what's the feedback you get from working with this particular group?
 
03:14
Ooh, the feedback. Well, I think the feedback I get is... I mean, I'll say my feedback. My feedback is I absolutely love it. Like, I love working with this group and I find it so...
 
03:29
One of my passions I'll say is being able to work with people from the developmental disability community and share my knowledge with them or helping them any way I can with what I've learned in my experiences. In terms of feedback they give me, I hope the feedback is, what do you mean, do you like me then? What's the feedback?
 
03:54
feels good though. I hope to be back and that they like me back and so I guess we'll continue to see. So just from you from from your own personal perspective it's it's a very rewarding challenge to do this. Yeah, I say so. I mean, I always try to I always feel rewarding. It's a weird thing for me to say.
 
04:18
No, I don't know if I truly feel rewarded by it, but I just love it. Like I don't know if it's I feel a reward, I feel like I just love it. It's something I'm good at. It's something I enjoy. I'm never at a point where I'm like, Oh, I don't want to go to work today. I can always, I don't want to do it. If I don't enjoy it. No, it's the opposite. I love it. I never.
 
04:37
never worried about having to go see a client because I don't feel like it today or this or that. I know how excited they are and that excites me as well, I guess, is how I would put it. Now that's, that's, that's, that I definitely understand that working with the Developmental Disabilities Association, I often feel the same way. So did you start working with Special Olympics or did you just start working with clients with developmental disabilities? No, so I started with Special Olympics, I started volunteering
 
05:06
I think I said about 2015 for basketball. I did that for five, four or five years first. And then about 2018, 2019 is where I decided I wanted to get a little bit more involved. And that's when I joined the care support team of the band that's next to me, Ben. And that was kind of my first step into getting a little bit more involved in the community rather than just doing an hour, an hour and a half of Special Olympics coaching each week.
 
05:34
kind of going to that role and then from there kind of progressing to getting more clients. So I started like Spectrum Health, which is my company in the beginning of the fifth year is when I kind of launched it after working with Ben for two years, two and a half years and figuring out.
 
05:53
you know, maybe there's also a greater need for this for other individuals in the community wanting to work out and get, you know, personalized and specific kind of workouts catered towards them and their needs and their abilities. Now, does that mean you have a bunch of other how many clients in this community? Do you have
 
06:13
Prior, so I have now I have nine clients in the community. Prior to starting, I just had Ben. But prior to starting, I just had one that was Ben and then talking to Tim and his parents. And they both agreed that they liked it and they thought there was definitely usage of other families and individuals wanting to use a service like this. And that's kind of where I.
 
06:37
I started it, so I started in January and then have gotten about eight or nine clients now. So you started technically in January this year? January this year, 2023. Okay, good. So hopefully we can get the word out. Because I mean, the health of people with developmental disabilities is so important. I mean, they're living longer, they're having more involved lives, and this can only be a huge benefit.
 
07:06
Yeah, exactly. I think, you know, as, as we try to promote more independence within that community, I think physical activity is something.
 
07:16
that everyone can have some independence with. And I've definitely started to see it myself. And Vancouver in the Lower Mainland is such an amazing place. We have so many awesome rec centres and other facilities that people can use. So I thought, you know what, if I can get people comfortable, used to it, independence, you know, there's more likely to go and be physically active on their own. So there's a huge push that independence is in the community.
 
07:46
like a physical activity aspect. Yeah, I just, I see this as a growth industry. And I like, you know, after being with DDA for a number of years now, I don't really see that. And that's what piqued my interest in wanting to talk to you is because no one seems to be doing this. So, you know, kudos to you because this is a real growth industry. So that said, what do you think has been lacking for people in the developmental disability community when it comes to health and exercise?
 
08:14
So yeah, I think the biggest thing that I see lacking is having done Special Olympics for a number of years, I got to witness what group activities meant. And there's quite a few, but there's not enough yet where those group activities, are they not frequent enough or they can be smaller in size. So for my program at Special Olympics, there's 30 to 35 different athletes show up.
 
08:44
They're all so varying in ability that...
 
08:48
I'm trying to accommodate everyone, but in the end, people on the higher or lower end are obviously going to get left out or aren't going to get out of it as much as they could had it been a smaller group setting. And I think that's what kind of really inspired me as well is to try to make it more one-on-one or super small group settings to really focus and allow them to get the most out of their own potential in a way. And that's kind of
 
09:18
approach like I want to work just one-on-one or you know do a small group class so I can really focus on everyone and focus on their needs and focus on how I can best you know get them to reach their potential yeah and at the end of the day not everybody wants to play on a team right exactly and that's that's a big thing too right it's very intimidating
 
09:39
to try a sport you've never played before. And it's super social as well because there's 20, 30 people showing up any given time, especially in the lower mainland sports. So that's something I've also seen as well, is slowly getting them comfortable with exercise and then approaching the idea, like, oh, now that they're feeling comfortable doing these different exercises, would you ever think about doing Special Olympics? And I've luckily had the chance to get one or two of my clients thinking about doing Special Olympics or Special Olympics in the future as well.
 
10:09
because they've started to feel more comfortable doing exercise. I've showed them how to dribble a basketball and now they have belief in themselves that they can dribble the basketball. So it's less intimidating of a barrier to get there as well. Well yeah and besides your services and besides Special Olympics, where can people with developmental disabilities find personal training or can they?
 
10:36
They can find personal training. I think if you went to any studio or gym that had personal trainers on staff, you could get that personal training for individuals as well. The whole idea of my service is that I'm mobile and I'm understanding that it's always tough for people to go to a gym or a studio for taking transit or a ride.
 
10:59
So I said like, hey, let's cut that out. Why don't I come to you? I can meet you at your house or I can meet you at your apartment gym or I can try to meet you at the community center like that's closest to you so we can walk over. Because again, I wanna get them comfortable on their own doing it. So my whole goal is if we work out at home a couple of times with me and then hopefully one other day of the week, I'll make you do exercises on yourself. You know your space, you know the equipment you have at home
 
11:29
I've had some success with that where I'll take the clients doing the exercises during our sessions and I'll ask them to do it two or three times a week on their own. And I've had a lot of success with them. At their house, they'll send me a screenshot of their Apple watch and it saves 20 minutes, 30 minutes of resistance or cardio training of what they do for the exercises that we do. They're doing them on their own now.
 
11:54
What do you what do you when you say you're mobile? What do you actually bring to the client? Obviously, you're not going to bring a gym with you. But what do you bring in? What do you get them to do? So I bring Like yoga mat, I'll bring a bunch of bands. I'll bring some hurdles. I'll bring some cones
 
12:14
I really try to tailor the exercises towards what they would like. So if they have specific goals in terms of some of them are doing, like Ben, doing Special Olympics sports and he wants to get stronger for hockey or faster for hockey. So we're going to do stuff that's going to focus more on that. If someone's just looking to generally move and get a bit better, we'll do the exercises and tailor the workouts towards that. But for me, I basically bring this, I just comment it's pretty funny. I show up with this giant duffle bag.
 
12:44
full of yoga mats, bands, stone turtles, we have some like weird little exercise ladders. So all these kind of smaller portable exercise equipment that we can use rather than big heavy weights. We don't need those big heavy weights especially when we're starting to drive a comfortable movie. We can do a lot of body weight, a lot of squats, planks, sit-ups, a lot of stuff we can do and again my whole idea is the last equipment
 
13:12
I use and the more likely I can get you to do exercises on your own. So if I have to do a lot of the stuff you do with equipment that you don't have at home it's going to get very hard for me to kind of get that client to do exercises on their own. So is a lot of your exercise primarily to do with cardio and conditioning and not so much weight training?
 
13:34
No, I would say it's a big mix of both. So I would say like a lot of some of it's cardio, but a lot of it's like resistance training. So muscle training, a lot of it's like balance training, making sure they have the ability to get balanced for themselves is a lot of like full prevention. Yeah, working a lot of my lower body strength, core strength, and then some cardio and conditioning in there as well. The cardio and conditioning comes into more how I structure the workouts.
 
14:02
So doing exercises back to back with less rest will keep that heart rate higher. And that's what that client will kind of get that cardio style of workout. Right. Now I'm going to switch over here a little bit. Ben, I'd like to talk to you if that's okay. That's fine. Tell me a little bit about yourself, Ben. Well, let me start.
 
14:32
What do you like to do? I like sports. What sports do you like? Well, I like hockey, football. Eventually I'm going to enter another sport in Special Olympics. I'm just hockey. So tell me a little about your hockey in Special Olympics.
 
14:58
uh... well we do stuff like drill like it wouldn't the proper on the call and i play on right wing right wing oxley you're you're you shoot right i'm a lefty i used to play uh... uh... left wing in hockey so it did this is is this floor hockey or is this ice hockey
 
15:27
Oh, I see what you're saying. Okay, that's cool. So how long have you been doing that? I've been doing it. Well, I've been doing it for just over a year. So what do you like about it? Um, it's it enabled to connect with new people. Um, and it's just really fun as well. Absolutely. It's really fun. How many people are on your team? Do you know? Um,
 
15:56
There's how many, 25, 30? Yeah, 25 or 30 people. Awesome, how many? They do like tournaments, a couple tournaments a year as well. That's awesome, like how many, are you a good goal scorer? Not yet. You'll get there. Who's your favorite hockey player right now? I'm going to say McDavid. Oh, he's amazing to watch, isn't he?
 
16:25
Yeah, he is. That guy is a magician. But you must, are you a Canucks fan? Are you hopeful for the new Canucks season? Yeah, I'm a huge Edmonton fan, but I'm a Canucks fan even because I live here, right? Yeah, I grew up in Edmonton, but I have to tell you, I've never liked the Edmonton Oilers. I'm a diehard Canucks fan. Oh, wow. But they're gonna need a miracle if they're gonna get anywhere near a cup, I think.
 
16:53
I actually have confidence for this year. They got some good players in the offseason. Yeah, yeah, we'll see how this goes. It's about rebuilding, right? Yeah. So what do you think about Mindert as a trainer? Um, he feels a good job. He does a good job. He's getting you prepped for the season? Yeah. When does your hockey season actually start?
 
17:17
on the end of September, the first practice. Oh, coming up real quick. So so what are you doing to get in in shape for that? I'm doing stuff like legs, leg presses. I'm walking walking. I'm outside my house like down down street and back. I'm doing I'm using dumbbells. That sounds good. Black hole, black hole.
 
17:45
Yeah, a lot of pulldown. Also, the exercise is in the gym. So you guys, which gym do you like to go to? We go to his apartment gym. Oh, okay. So he's got a gym that comes with the suite and stuff. That's kind of convenient. Yeah. We also go to a gym here in North Burnaby called Willingdon High Park.
 
18:09
There's a community center there that we go to as well. Well that's good. So there's lots of stuff to throw around. So besides hockey, what do you like to do? What do I like to do? Collect hockey cards. Oh, that's a good one. You got any really good valuable ones? Well, I got McDavid's. Of course. And Jack Eichel. And which one?
 
18:38
And Eichel. Oh, Eichel. Oh cool. That's cool. Nice. You're my first cup here. Yeah. So you've got a, you'll have to get a new one with Quinn Hughes with his captain's jersey. Yeah, I know. I also own like 20 NHL jerseys. Really? Wow. Yeah. I have one. Twenty is a lot. Yeah. Can you list a few? Pardon? Can you tell me about a few?
 
19:07
Um, well I have a McDavid, the M&M's orange jersey from McDavid. I have a Pedersen All-Star jersey from the first All-Star Game of Them. And I have a Hughes jersey, Betzer, four-bounded from the Canucks. What do you think of Betzer these days? I'm not really impressed. Yeah, he was like the great hope.
 
19:36
hasn't really transpired as it means good don't get me wrong but yeah we'll have to see how he does this year first year he's again injured a whole time yeah yeah he was and left the door to the bench open and oh that was brutal wasn't it yeah that looked pretty painful yeah well that's great so what do you what do you like to do when you're just at home Ben
 
20:07
So you really are a rabid hockey fan is what you're trying to tell me. Yes. That's good. Cause the season's coming up and getting excited. I'll get my own Jersey on. So we'll see how everything goes. So I'm going to, I thank you for talking to me, Ben. I'm going to switch this back to mind dirt now, if that's okay. I know. Perfect. All right. Mind dirt. So, um,
 
20:35
In your view can most people with developmental disabilities use systems at gyms without too much of an issue or do you some because obviously Machines like hammer strength and things like that are pretty much designed for typically developed people Do you run into any issues with that or do you even use machines or is it more of a freeway thing?
 
20:59
I like the idea of free weight, like I said, balance, which is an important thing that I want to work on for fall prevention, as well as just overall making sure they're having a stronger level of coordination. You don't quite get that with machines. However, I do like to use machines to start to show them how to move, like how I want them to actually fold with their leg, or how I want them to use their arm in a certain way, because machines are very nice for that.
 
21:28
So for me, the biggest thing is, you know, progressing or adapting the exercises, the individual's ability. So if I feel like, you know, they're ready for exercises that require a higher degree of coordination, it's more free weight. If I'm understanding that they're not quite there, but they're definitely have the strength to, you know, move them around, I'm going to try to get them on the machines a bit more. In terms of like being set up, I mean.
 
21:58
You know, there's certain limits to each machine, but for the most part, they're well set up for everyone. There's a lot of adjustability because, you know, some people are taller, shorter, longer arms, shorter legs. So the machines themselves have a lot of adjustability. And that's why, as Ben mentioned earlier, like we love the light press machine. It's a great way to get the legs super strong, move a bunch of weight. That doesn't require the same level of like coordination right now with a heavy squad or something, but you can get those.
 
22:28
get those legs feeling like they're doing a nice heavy squat but in a nice controlled motion. So when you're a registered kinesiologist, you've done all the education, and like within that education is there something that, are there any courses that are geared toward working with people working with people with developmental disabilities or is it just a general education that way?
 
22:51
No, it's definitely more of a general education and even then I say it's a lot of like learning on the job.
 
22:58
Again, it's very hard to teach someone out of a textbook and in the classroom how to teach someone else how to move, how to, you know, how to do certain exercises. So that's where I graduated from SFU. I had the chance to work as a kinesiologist in a studio for two or three years as a personal trainer and as a kinesiologist. And that's where I kind of learned.
 
23:23
how to change exercises according to each person's ability. And as a kinesiologist, I work with a number of people from like ICBC who had motor vehicle accidents.
 
23:35
And that's kind of where my chance to really learn how to progress and regress exercises based on what they could do because they had physical limitations based on their pain or their injury. That's where it was really awesome for me to understand like how to progress and regress exercises to fit the individual. And I kind of carried that over when working with Ben and working with a couple of the other clients is how I can adapt exercise best for them.
 
24:03
I wish there was more coursework on how to work with people, but physically also how to work with people with disability. But any kind of coursework you would do, that would be on your own. I do know that there is like an online or virtual course that you can do that allows for individuals to have like autism exercise certification.
 
24:29
as well, but nothing like directly out of school in terms of working with people with disabilities. That's kind of something you have to do on your own. Yeah, I'm finding that. And have a chance. Yeah, I mean, I did a podcast with Michael Serrata, the guy who owns Serrata's Martial Arts Academy in Vancouver and Richmond, and he does a lot of work with people with developmental disabilities as well. If Ben, if you're interested, he does a really great service. And then what I found with him too is that...
 
24:57
Any training or instruction in that respect was something he had to do on his own, much like yourself. So it seems like there might be a growth industry, or a growth at least in the education system, when it comes to people with cognitive disabilities. Because there's a lot of people out there who could use that kind of service. Yeah, I think you're starting to see more and more of it too right now that independence is a lot more focused on. Yeah.
 
25:26
But yeah, I would say it's the same thing that Toronto said as well, with a lot of learning on my own and figuring out what, you know, how best I could do it, I guess, is what I've learned from that. Yeah, and I'm not saying that there's a silver bullet solution to that, but it just seems like with inclusion and community living being the driving force these days, which is great, you know, having more of that support through our education system might be a good thing.
 
25:55
Exactly and you know I'm solely in the background and working on trying to partner with like the different municipalities of trying to you know host because each of them have their own like Burnaby has adapted programs um each of them have their own and you know maybe getting them a little bit more.
 
26:11
attention or you know providing people with a little bit more insight how to use these resources so there's different municipalities are trying to offer them more um i think the biggest thing is people just don't know where to start you know they've never been in a gym before one it's very intimidating but two how do you learn to do all these exercises without someone trying to help you exactly exactly i mean even even i go to a gym and sometimes i don't know what i'm doing you know i do the best i can
 
26:38
But at the end of the day, here's the sort of sad reality is that hiring a personal trainer costs money. Yeah. And we all know that people with disabilities, their life already may cost more than a typically developed person. So that becomes an issue. Talk to me about how people can afford your services. Yeah. So again, so luckily I early on...
 
27:03
got some insight and help through CLBC, Community Living BC, and talking with them, individuals are eligible to use their respite funding if they're approved by CLBC for my services. So that's like one way that it can be cost effective for.
 
27:22
for people, which is super nice. I'm starting to slowly try to expand as well into like younger teens or sorry, older teens and they'll still be eligible for like autism funding. So getting approved for like autism funding units. The other ways for like paying for my services is I recently decided that I'm trying to do a new service and that's where I understand that people already have a bit of a healthcare team on it
 
27:52
own or they have already had respite workers. So I call it like my hands off approach and that's where I meet with someone just once to go over and assess.
 
28:03
how they move, how it's going, and then trying to set up like an online platform for them to use. So my example would be like, I have an online training tool, we meet once, I figure out, okay, here's what I feel like you could improve, here's how we can make it work. And then I use like an online coaching tool to set up workouts for them to do either on their own if they have the capability or with a current respite team they already have in place.
 
28:34
to make it as accessible for everyone as possible. So I'm even looking to do smaller group training classes throughout the city, in different municipalities, so people can come at maybe a slightly reduced rate. So I'm looking at that. And then I'm looking at the community health and safety services. So I'm looking at that. And then I'm looking at the community health and safety services.
 
29:02
um having yeah like like like i said like set up with community gyms or so community centers that already exist of having a service like this with other coaches that can do it as well so so they have the chance and i think like you said it's the movement for independence comes like just training people on figuring out or
 
29:23
training people on how they can help others approach this. So if there's other personal trainers out there that are trying to do something similar at their gym or the studio, how I can best direct clients towards that local gym or studio close to them. So, I mean, the possibilities are endless in terms of what Spectrum can do, but for me, it's just trying to provide my service to as many people as I can.
 
29:51
because I know how big of an impact it can have on on their lives. That's staying healthy. That's key. It's key for anybody. So how do people how do people reach you? So people can reach me easiest way to do it is through my website, which is MB spectrum health.com. And that way they can read all about my services. And on there is also my contact information, my email, my phone number, there's like an intake form there is
 
30:20
Um, there are some like referrals as well, or, you know, past clients, what they said about my service and what they've liked about it. The other way you could do it as well is I have some brochures that I printed off and dropped off around the city. I'm going to drop them off at the CLBC has them at each of their offices. I'm actually, hopefully to come go to DDA and drop off the brochures. Please do.
 
30:43
So there'll be some brochures around, but easiest way is to just to look me up online. That's again, mbsp And there's a website that has all my information there and my phone number. Awesome. I think that about wraps it up. Minderth and Ben, you have been listening to DDA's Encouraging Abilities podcast. My guest today has been Minderth Hindlopen. Minderth is a heavily involved in the developmental disabilities community. He's a kinesiologist and coach for the Special Olympics PC.
 
31:12
He set up a mobile personal training business for people with developmental disabilities called MB Spectrum Health. He wants to help them reach their health and fitness goals and create a literal level playing fields for everyone. You can find more information at MBspectrumhealth.com along with Mind Dirt. Of course, there's one of his clients, Ben, today who loves hockey. He was here to help champion what Mind Dirt is doing. I thank you both for being here today. Thank you so much for having us.
 
31:42
Thanks Ben, thanks for listening, see you next time.
 

Jamie Dri Success Story: Celebrating 15 Years With Jobs West

For many, success is defined by job title and bank accounts. For Jamie Dri, overcoming crushing anxiety and living independently means she is on top of her game. She has been a part of DDA's employment program, Jobs West, for the last 15 years and has no plans to stop! She shares her lived experience in this episode of the Encouagring Abilities podcast.
 
TRANSCRIPT
 
Jamie Dri Success Story: Celebrating 15 Years With Jobs West
 
00:05
Welcome to DDA's Encouraging Abilities podcast. I'm your host, DDA communications manager, Evan Kelly. Here we are in our comfy little sound studio, DDA head office in Richmond, BC. This is our 29th podcast. And fortunately today we have a long-term client of DDA talking to us about her lived experience with some of our programs. We have done many podcasts with advocates and experts, but not always someone who brings their lived experience for us to hear.
 
00:33
So joining me today is Jamie Dri, who's been involved with our Jobs West program. And not only that, she's celebrating 15 years of working with our Infant Development Program, which is absolutely amazing. It is a huge success story, but it hasn't always been that easy, of course. So thank you for joining me today and making the effort to come to head office and do this face-to-face, because we don't often get to do it, sometimes thanks to COVID, but I'm really happy to have you here. Thank you.
 
01:00
So right off the top, Jamie, tell me a little bit about yourself. Well, I live on my own in Vancouver and I have a job working with kids. I love painting, reading, and I'm a huge fan of Shania Twain.
 
01:21
Shania Twain. I'm a musician myself, so I like to talk about music a lot. One of my questions was going to be what's your interest in music? So what's your interest in Shania Twain? Not only do I love her songs, but I love her as a person. I think she sets a very good example for everyone.
 
01:47
out there. After all she's been through, she's, I find her to be a very strong woman. Yeah. Just a good all-around Canadian. I adore her. Yeah, she is very good. So how did you start with DDA and Jobs West?
 
02:05
Well, I was referred to Jobs West by a social worker 15 years ago. And I said I wanted to work with kids and that's when I started working at IDP and I've been working there ever since.
 
02:25
15 years is a long time for anybody to be at a job. I don't think I've held a job for 15 years in my entire life, to be totally honest. I've been with DDA for about four years now, and really quite enjoying it. So tell me what you like about working with kids.
 
02:43
I just love kids. I think they're so cute and they're sweet. And I just love them and they come up with the funniest things to say sometimes. Absolutely they do. So how many days a week do you work at IDP? Three days a week, Tuesdays, Wednesdays and Fridays. Do you have another job outside of IDP? Right now it's just IDP.
 
03:10
And you've mentioned you like working with pets. Yes. I love animals and actually I used to do work experience at a doggy daycare about 17 years ago. I played with the dogs and fed them. And I remember there's one little dog who
 
03:39
He got pretty attached to me and every time he saw me coming in he would run up to me with his little paws in the air. I'm a dog lover myself. I totally, I totally get what you're talking about. I don't have one right now. Do you have any pets at home? I have a cat. Oh, do you? Yes. She's with my mom right now. What's her name? Her name is Abby.
 
04:01
Abby. Yeah, I call her Abby-dabby-doo or abber-dabbers. Abber-dabbers? Yeah. Is Abby a tabby? Yes. Is that right? Yes. I guessed it. I had no idea. And so do you still take part in a lot of, pardon, or drop in the center these days? Yes, I do. And what do you do there? Is art a big part of that for you?
 
04:28
Um, yes. I haven't been to art lately, but I'll work on that. Yes, we need more art. So tell me about a day about working at IDP. What do you do? You get there and then what happens? Well, on the days that I work with the kids, which is once a week,
 
04:57
First we have about an hour of free play.
 
05:08
So I play with them, I talk to them and get to know them. Then we do clean up and snack, and then circle time and some songs. And then on the other days, I clean the toys. I'll clean the toys, okay. Yes, they've gotta be sanitary, I suppose. That's pretty important. Yes. And how many hours a day for those three days are you working?
 
05:36
Um, three hours a day, so that would be nine hours in a week. That's a nice work week. Yeah. That'd be all right. Yeah. So I'm also been told that you, you know, we'll switch gears a little bit here. I'm told that you've got an indigenous background. Yes. Can you tell me about that a little bit? Um, yes. My dad was part indigenous. Uh, Cree, I think.
 
06:06
I think. Interesting. That's a little, I think that's a little Eastern from here, but that's kind of kind of interesting to know. What do you want the community to know about you?
 
06:19
What I want the community to know about me is... You can take your time. Like again, there's no rush for any of this.
 
06:30
Well, coming from someone who used to suffer with such terrible anxiety, not so bad now, but I would say anything is possible if you set your mind to it.
 
06:52
That's amazing. Can you talk a little bit about your anxiety and how that was for you? Because you don't seem like you have that much anxiety right now. And this is a very strange setting for anybody, really. Well, before... I would get pretty bad panic attacks.
 
07:18
years ago because there was a lot going on in my life that needed to... I needed a different situation, I'll just put it that way. Understood. Yeah. And how are you doing now? Good. Good? Yeah, I'm doing really good. Excellent. So you're living on your own now? Is that 100% living on your own or do you have some help? I'm living on my own. I've been living on my own for the last...
 
07:48
four years, but I've had LifeSchools workers help me out. I see my LifeSchools worker that I have now, I see her on Thursdays and whatever I need help with, she's there. And that's great. And you now live...
 
08:11
It says in 2016 you went back to live in Vancouver. You went to live with your mom prior to that? 2016? I was actually already living downstairs from my auntie with my family. But I used to live with my mom and brother in Surrey for a couple of years and then we moved back to Vancouver.
 
08:41
That was around 2011 or 2012 or something like that. You prefer living in Vancouver? Yes, yes. It says, I understand you live in a co-op now? Yes. Now, my understanding of co-op is that residents often have to sort of give back a little bit. Like I have friends who live in a co-op and they have to like help.
 
09:07
build fences or something like that to help with the overall community? Is there something like that in effect or do you just do your own thing? Well I've joined some events. Any opportunity I get I participate in the events.
 
09:28
Just community kind of events like are they barbecues or? Yes, a barbecue. I've been to a magic show. I've been to a yard sale. Cool. Did you buy anything? Yeah, I bought a little angel bear from my room and a little Christmas mouse. Well that's good. Christmas is coming.
 
09:58
So how does it feel to be living independently? You're pretty much on your own and you have some help from time to time, but you're mostly doing your own thing. How does that feel? I love having my own place, especially in a co-op where I can stay forever and I can decorate it and make it my own. Is it a one-bedroom place you're in? It's a one-bedroom.
 
10:28
in Vancouver that can be really expensive so I'm glad you've got some place safe and sound. Yes, me too. Let's go back to Jobs West. You started with Jobs West something 15 years ago you were saying or 16 years ago? It was about 15 years ago. And it's only been IDP that you've worked with with that program because I know we've got clients in a variety of different things. First...
 
10:56
It was, yeah, definitely IDP. I've also worked at Grandview. I started working at Grandview DDA before I moved into my own place, a few years ago.
 
11:22
And I was cleaning, there I was cleaning the New Zealand room. Do you consider yourself a self advocate? Um, I think so. Someone who thinks it's important to stand up for people with developmental disabilities. Yes. And what would you say to someone who's trying to be independent like yourself? Um,
 
11:52
Well, I would say to them.
 
11:58
I would say if you want to live independently, but you're feeling scared to make that move, it's totally okay to feel scared because change can feel scary at first. Don't think that you have to feel a certain way. I think that was very well said. That's extremely wise. It's okay to feel scared.
 
12:26
And how do you feel about DDA? Have they been really supportive of your goals?
 
12:33
Yes, DDA has been very supportive. I got my job through Jobs West and CAP has helped me in so many ways over the years. I've learned life skills like cooking, cleaning, speaking up for myself and budgeting and I've also had lots of emotional support. Oh that's good, that's good. So
 
13:01
Like has it been hard for you to get to where you are today? Yes, it hasn't been easy. I've worked hard and pushed through a lot of anxiety and obstacles that life has thrown at me. However, with the amazing support of many people in my life, DDA being one of them.
 
13:27
I was able to overcome it and it led me to where I am today. Now going back a little bit, did you grow up here? I lived in different cities, but yeah, I grew up here. So you were born and raised in the lower mainland? Yes. Essentially. And where did you go to school?
 
13:56
Oh, I went to many different schools. My, I went to high school at Pine Tree in Coquitlam from grade 9 to 11. And then, and then after that.
 
14:21
I returned home after being in foster care and then I went to Centennial and graduated from there. Nice. Yes. Now, you were in foster care growing up. Do you want to talk about that a little bit or is that too much? I won't get into that. Okay. That's okay. But at the end of the day, you did end up going back and living with your mom, correct? Yes.
 
14:50
What are your plans for the future? Do you give that a lot of thought? I know you've been with IDP for 15 years, but maybe you'll want to change or something like that? I definitely want to stay with IDP until I retire. Until you retire? Yes. That's like 40 years from now. I ain't going anywhere.
 
15:14
But otherwise I'm not really sure right now. So far I just want to keep doing what I'm doing. That's good. I mean, you're working three days, nine hours a week. Do you want to increase your work and work more? Or you're kind of happy with the way things are right now? I'm happy with the way things are right now. I might think about.
 
15:41
increasing, getting more work. Mm-hmm. Yeah. That's good. I mean, a little more money's not going to hurt anybody. Yeah. And so, when you're living on your own, you're making your own food. I'm trying to expand even my own kitchen skills. And what's your favorite thing you like to make yourself?
 
16:03
I really like this pasta, there's not a particular name for it, it's like a stir fry. So I add like zucchini, peppers, other lots of vegetables. And I add
 
16:26
The really thin, the angel hair pasta, my favorite kind of pasta. And then sweet and sour sauce. Oh, sounds like a very Asian dish. It is good. So what do you do on weekends? Usually I'm with my family on the weekends. I see my mom and brother. Oh, and they're in Surrey? Right? They're in Vancouver. Oh, they're in Vancouver now. Okay. Yes. And how old's your brother? He's...
 
16:57
32. So he's older than you? He's younger. He's younger than you? Yeah. And what do you guys like to do on the weekends together? We just hang out. One of the things we do is a Schneidwein karaoke. Oh, give me a sample. I don't know if I want to put you through that.
 
17:26
Oh my gosh. Where do you, so you just, do you do Shania Twain karaoke at home? Oh yeah. Yeah. As an actual machine or you just sing along? I just sing along. Are you a good singer? Sometimes. You don't have to be bashful, that's okay. That's pretty funny. Who are some of your other favorite music artists? Um, I mostly listen to countries. So like Faith Hill.
 
17:56
Leanne Rimes. That's going back a little bit too actually. Yeah, Trisha Yearwood. Those are some big names. But it's mostly Shania Twain. Keith Urban? Do you like Keith Urban? I don't listen to his music much. He's got some, he borders that...
 
18:16
Kinda country, kinda rock pop, so I'm not a big country fan, but I like what he does. And I do like Shania Twain. Respect to Shania Twain, for sure. Yes. What about, like, what movies, what movies do you like to go see? Or maybe you don't like seeing movies. I love movies like Titanic. That was the last...
 
18:39
the last movie I went to see with my cousin. It was in 3D. Oh wow, Titanic in 3D. That's a little bit out of the theaters for a while now. What about James Cameron's other big things like Avatar and stuff like that? No. You don't like those? No? No, not really. Alright, fair enough. So I think we can almost wrap this up. We're doing pretty well here. Is there anything else you'd like to...
 
19:07
Tell the public about being a self advocate, about doing your own thing independently, and being a worker, and being dedicated to what you're doing? I would say, like I said before, that I did suffer with terrible anxiety, and I came a long way from that. Absolutely. I mean, like where I am now. So...
 
19:35
I would say, again, if you're feeling scared, that's totally okay. Just feel what you're feeling and allow it. And if I could do it, you can do it. So how did, I'm curious about anxiety because I mean, everybody feels anxiety on some level. Yes. How did you work through the harder stuff? Well, I've had lots of people that talk to, that have been a great help to me. And...
 
20:06
Yes, there were some things in my life that caused my anxiety to get so bad and out of control that I won't get into details but sometimes I'm not even sure how I made it through all that. But yes, but yeah I have I've had a lot of support though.
 
20:32
Well, that, I mean, to me that just deserves a ton of recognition. Anybody who can recognize that they've got something they need to work through and accomplish that is unbelievable to me. So I doff my hat to you. Like, well done. That's very, very impressive. Thank you. So I think we're about done. I think you've answered all of my questions brilliantly. And then we can go post this online.
 
20:58
You've been listening to the DDA Encouraging Abilities podcast. Our guest today has been one of our great success stories, Jamie Dri, who has been involved with DDA and JobsWest for over 15 years and is actually celebrating 15 years working with our infant development program as proving that independence is possible if you work hard enough at it. Jamie, thanks so much for being here. It's been great to have you. Thank you. Thanks for listening. We'll see you next time.
 
 

Managing Anxiety in Autism: Going Full Improv with Dr. Nathan Keates

A chance meeting on 'X' has DDA chatting with Dr. Nathan Keates, in London, England about his Ph.D. thesis that postulates improv theatre has a benefit for autistic people when it comes to managing anxiety and more. 
 
TRANSCRIPT
 
Managing Anxiety in Autism: Going Full Improv with Dr. Nathan Keates
 
00:06
Welcome again to DDA's Encouraging Abilities podcast. I'm your host, DDA Communications Manager, Evan Kelly. In today's episode, we are talking about autistic people. And through the power of social media, I managed to contact Nathan Keates. They're a lecturer and early careers researcher in the field of critical autism studies and the University of Sunderland in London about their PhD thesis. Now this is kind of cool. It's the power of social media again. Through a tweet, I'm not sure if we can still.
 
00:36
call it that, through an X, I'm not sure now. So he had posted a picture of themselves proudly holding the copy of their PhD thesis. Now, the thesis completed at the University of Kent's called Going Full Autistic in Improv, Reduction in Anxiety and Other Benefits. And that's exactly what it says. Improv as an improv comedy and how that might positively affect anxiety and other autistic valued benefits.
 
01:05
not only is Nathan a scholar, but they also previously worked in theatre. So Nathan, thank you again for taking the time to join me today from across the pond. That's alright, you're very much welcome. I enjoy talking about this. Now that's great. So just right off the top here, tell me a little bit about yourself. Well, as you said, I'm a lecturer at the University of Sunderland in London.
 
01:32
That's in health and social care. As you've said, my research and such is in critical autism studies and I have previously taught that at the University of Kent where I was doing my PhD. Previous to that, I've got a background in theatre so I have taught improv for quite some time, probably going on 17 years. So the PhD was basically trying to stitch my life together.
 
02:00
in an interesting way. So in 2007 I went to the United States of America and I talked some improv in a summer camp there and that was a wonderful experience, so wonderful that I thought I had to do more with it. And it took me a decade or so to look back to academia to start stitching things together but between that period I was practically doing stuff.
 
02:30
So that's a little about me. If that can be classified as little, I don't know. Theater, is that your first love before you got into the higher learning about autistic people and stuff? Yes, for sure. My aspiration as a child was to get into acting, and I did that until
 
02:58
Well, in part, I'm still doing it, but it's no longer my profession. Just because the way life turns, I found academia and I actually really enjoy research and I really enjoy teaching. And these are what I can do in a higher education institution. And so you got a PhD now, so we can call you a Doctor of Philosophy, which is quite cool.
 
03:27
Yes. You would have started, you got your first degree, then probably a master's and then a PhD. How long has this taken you to get this far? Very long because I didn't have that inclination to be in academia. I started in university in 2005, and then I
 
03:56
Then I found out I like teaching, so I then went back to university and I did a PGCE, so that's qualification for teaching, and then a few years later than that I then started thinking about how I could piece elements of my life together and I went back to university for masters. Then the idea of the masters was to go to the PhD. I did take a year break between the
 
04:25
but that was just to make sure the PhD was set up and I could actually get what I wanted. Cause trying to get all the paperwork done as well as finish the master's is a little difficult. Yeah, you know, my mom always said that a PhD means piled higher and deeper. So how long did that aspect take you? Oh, four years, four years of doing the PhD. I believe that is accurate. It's probably nearing five years in reality. Yeah, nearing five years, but.
 
04:55
I'll say four years because it sounds nicer, cleaner. That's impressive. What is your interest in autistic or neurodivergent people then? As I said, I probably didn't know anything about autistic or neurodivergent people before going to that summer camp. At the point where that happened, I started reading around with it.
 
05:24
I'd better find out about this. Just so happened that after that returning back to, because that was during my undergrad times, going to that summer camp, I went back to university and realized or found out that a lot of my friends were actually autistic and neurodivergent. And even retrospectively now looking back at who I was hanging around with and enjoyed spending time
 
05:54
probably also neurodivergent as well. Not that they didn't disclose anything, but just understanding from where I am now is very likely. So that's how that began. And then just getting along really well with autistic and neurodivergent people means that personal interest is sustained throughout the years and then academically.
 
06:21
It's just a great topic to ensure there's some development, positive development, in a way that's going to actually be helpful for autistic and neurodividend people. So my professional interest there is just because I do have that aspiration to try and improve people's lives, you know? Yeah, I mean, that's precisely what we do here at the
 
06:50
Many clients who do certainly identify as autistic here, but we you know We sort of run the gamut from developmental disabilities from fetal alcohol spectrum disorder down syndrome The whole thing but your your your thesis is focused on the autistic community, correct? Yes. Yes it is. Yes and Why did you choose yeah, we talked about it in like again the title is going full autistic and improv. Why did you choose?
 
07:20
in improvisation as a basis for your study? Um, yeah, as I say, it was about pinning things together. So having taught improv and having taught it to autistic, that summer school was, summer camp was kids, predominantly anyway. So having, having that experience and trying to pin things together, I went into my masters, didn't know what I could do. So actually my master's research was
 
07:49
autistic comedians and looking at comedy and then I moved from that onwards to improv. So it really was just pinning things together and you have to be interested in your PhD in order to complete it. So coming from that interest, by all means in academia we talk about conflict of interest, you could suggest there is because I have taught it but...
 
08:18
there was a cutoff where I really have no interest in financially gaining from autistic people engaging in improv. Yeah, but nonetheless, that has its own debate, but we don't need to talk about that on your podcast. And so you mentioned that your study group, I guess, wasn't that big. And so did you take me through that process of sort of studying people?
 
08:47
with autism within the improv environment? So yes, the second part of my thesis looked at autistic people engaging in improv and such, and the whole process was quite a big process. I had to start with understanding what was already out there, what literature existed, then I wanted to understand, well, there's not even a lot
 
09:17
whether the past literature around that actually fits to the global community of improvisers. And then from there I started looking at autistic improvisers' experiences, non-autistic improvisers' experiences, and then eventually get into that point where I could set up classes for autistic people and then explore what that could be. So I had 17 people in that class.
 
09:46
second part of the thesis where I looked at that study in various ways. So I was looking at how to implement the classes in an appropriate manner, so conducting some research where I look at if the classes were suitable, if not adapting it, and that was cyclical when it was constantly going through these phases with different groups. The groups themselves are quite small because Covid
 
10:16
because it was necessary for people's comfort as well. We were online, so there's various reasons why each group was small, but I had multiple groups, so that was happening. I also looked at the benefits in general, and then I also measured and asked about anxiety. So those are the three sections of that last study, which is quite hefty, as you might be able to tell. I hope you can tell.
 
10:43
It's like when you're measuring anxiety, I mean, that seems to be a big part of your thesis. Do autistic people do better with anxiety in improv? How did you measure that anxiety? I was interested in just understanding generally about anxiety. I used a measure around state trait anxiety, so the general state someone has in the moment. Is that reducing?
 
11:12
maybe even if someone's traits, their general anxiety levels, would that decrease? The answer is no, that's the one thing that didn't happen, but I also looked at social anxiety and there's a measure called Leibowitz social anxiety scale, I used that looking at social anxiety and that did seem to reduce for within that study. So we can suggest that for some autistic people social anxiety will decrease.
 
11:41
But I did find this social avoidance won't decrease, and there's lots of reasons we can explain that one, but just hypothesizing around why that could be. And I also looked at uncertainty, and we don't want to talk about uncertainty in a way that is a misnomer. Everyone experiences uncertainty. What we want to look at is if certain things can reduce uncertainty for everyone.
 
12:10
and improv seemingly can do for the general population because it has been done by a wonderful academic over I think in the States USA called Dr Peter Pelsman. He works, he does a lot of work on improv and on anxiety and uncertainty. So he's done that and I used this concept of uncertainty to see if that would reduce and it did seem to as well. So these were the things I was interested in but I also wanted to understand exactly
 
12:39
what was working, why it wasn't working, you know, just generally understanding qualitatively about it as well, because we can measure these things, but sometimes measures aren't really gonna capture what we need to, because we start making lots of assumptions when we start measuring. So I asked the qualitative stuff as well. And with that, we have to acknowledge the fact that the social world is not constructed for autistic people nor neurodivergent people. That is obviously-
 
13:07
obviously going to create issues, so we have to understand that anxiety could rise when they're not in improv and when they are in improv maybe it goes down, but the first class is always going to be anxiety-provoking, so that's going to shoot sky high, and if things don't quite go quite right in the class, anxiety is going to spike as well. But in general, anxiety seemed to be quite low qualitatively during the classes, and I only really looked at pre-post for the measurements.
 
13:37
So that was true as well. And there's always gonna be other aspects that create or decrease anxiety, including those outside aspects. Even just, everyone might experience, if you're in college in the States, then that could mean, oh, you're worrying about your workload, or maybe if you've got stuff in the job and you're worried about...
 
14:05
something in your job that was going to increase anxiety anyway. So, you know, we can't, we can't just reduce down, reduces down to a yes, no. Well, yeah, exactly. It seems like, you know, for lack of a better term, bit of a spectrum that you're trying to try to cover there. So, but how many, you know, when we're talking about classes, improv classes, how many would you have done with these 17 participants in order to generate,
 
14:34
some of the answers you're looking for. So this is actually quite a let's say cool thing with this. It was COVID times, it was online, so there's limited, there's limitations about what I could do. I only ran four online classes and I and during COVID time I still seem to manage to find a reduction in social anxiety and uncertainty. I think that's pretty impressive considering it's not a lot of time. But so I was quite quite
 
15:03
I wouldn't say surprise, but I was quite happy to find such a result. I don't want to say I was going to say clear as though it's not clear necessarily, but you know, it's it's there, it's significant. And with all that qualitative data, it was it was quite there was some some clarity to I suppose. I don't want to oversell some. Now, did you obviously this was just focused on
 
15:32
autistic people? Did you look at any other sort of neurodiverse people with different disabilities, or just autism? So in another study that I did in the thesis, I looked at autistic improvisers, I looked at neurodivergent improvisers that weren't autistic, and I looked at neurotypical improvisers. So in this one, I did look at neurodivergent improvisers and neurodivergent people.
 
16:01
But I didn't measure anything. Those were interviews I conducted. And they had experience of improv. So it's just understanding their experience of participating in improv in whatever capacity they did. You talked about reducing anxiety, but what other benefits did you notice for autistic people involved in improv? So other benefits included there's a way of looking at quality of life. So qualitatively
 
16:31
looking at quality of life, we found that there could be aspects of emotional well-being that occur, there could be aspects of social relations that occur, and such things like this. For all improvisers, going back to my first survey that I conducted, we can tell that there are some social developments and communication developments, but we don't want to apply this to autistic people, because then we're going to lead down a track of
 
16:59
let's do social skills training which is really really inappropriate. Never do that. Let's go and force autistic people to mask. That's not appropriate, it's not good. We want to enable autistic people to have their own autistic sociality which does occur, it does exist. There's various research that says that. And in improv it's a social art so I preface what I'm
 
17:29
Improv can provide a space where you can develop socially and develop your communication and that occurs for no matter what neuro type you have. So that's another benefit that you can have. Improv can be like a well it does have a community so you could find a community of people that you want to engage with as well so that's something else that.
 
17:56
that can exist and that was threaded through the whole of my thesis because it happened with the first survey and even at the end I was talking about autistic space and how the autistic learners in that class enjoy being with one another so that was already creating a form of community there and some of which did go on after the class to continue doing stuff together.
 
18:26
Now, within those classes, I mean, I get that you were sort of focused on the autistic people. Were there neurotypical people involved in the class at the same time? No, simply no, no, that would also damage the autistic space. It was literally stated in a focus group in those classes that if there was one autistic person there, that would ruin it all. Like if we were actually in person in a community hall and the other half of the
 
18:56
their attention, the autistic participants attention would not be on their class, on the improv, but the other people in the room. And also, even if it's with the online class, if there was a neurotypical person there, they would be concerned or worried about whether they would be paired with them in a game. I was putting people in breakout rooms during this process, so they'd be worried that they would be paired with the neurotypical entering a breakout room. So
 
19:26
So it is important to understand that it can be easier for autistic people and neurodivergent people probably to be paired with other autistic or neurodivergent people. Many of the participants did state that it didn't mean need to be an autistic person necessarily because neurodivergent people can be quite welcoming and such and quite accommodating anyway, so neurodivergent identity is quite adequate according to what I was told.
 
19:56
Now, the group you're, I guess they would be qualified as a high functioning autistic? We don't use that. Just because that creates distinctions between people that are really inappropriate and just inaccurate, essentially, it creates stigmatization of people. You're high functional, you're low functioning.
 
20:25
it doesn't work at all. I got a research around this as well. I conducted a survey fairly recently around the viewpoints of autistic people around language, and it was a very small amount of people that were okay with function labels. Most people were, most autistic people were not, and even within those people that did find it acceptable to use function labels, there was a little bit of difficulty understanding exactly how it was because
 
20:54
Some of the points within it suggested that, well, I don't use it for myself, but I'd use it for other people. Well, it doesn't quite match fully. I can't talk a lot about this just because it's not published, but that's a quick overview around that. Yeah, I agree. The whole language about that seems to be evolving a little bit. I've been involved with Developmental Disabilities Association for about three and a half, four years, and it's been very eye-opening for me.
 
21:24
You know, you sent back some edits to me before we engage in this conversation. You want autistic people, whereas by and large, the association here tries to put people first, like person with Down syndrome, person with autism, where it's the autistic community, as you've sort of shown me, it's the other way around. Yes, yes it is. And so, yes, thank you for that.
 
21:53
bit of education. Now, what sort of limitations did you find in your research, or perhaps were there some instances where improv sort of didn't do what you hoped it would? Yeah, there are difficulties with coming out with solid concrete conclusions, which I've tried to be careful with during this as well, because I can only say improv may work.
 
22:22
for some autistic people. And that's because inside the class, I also have people that just didn't get on with it. I had someone that really wanted to enjoy it, but just struggled too much to engage with improv and its natural needs, requirements. And someone else just didn't like acting out basically. So there's no value to them to engage in improv when the whole...
 
22:50
concept of it is to act out sketches and act out stories. So in fact they went back to something where they could improvise in a way that was better for them and they through the process of engaging in the research, my research, they actually returned to something they previously done where they could engage with improv but in a more suitable way for them. So there's some limitations there. Improv is not a panacea which is a quote from another
 
23:21
Now, in terms of the improv itself, were you sort of leading towards, when you talk about sketches, are you leading towards serious drama type things or more comedy? Was there an element that was a better vehicle, if you will? The late, great Keith Johnstone would say that comedy will become...
 
23:46
more easily and first if you want to be dramatic and serious that takes a lot of effort you need to develop as an actor to get there. So having that fun, having and sharing that fun is naturally going to create comedy more than create something serious. There are going to be people that enjoy more serious presentations of the scenes they want to do and that's okay. It just means that people
 
24:15
need to be on board with exactly what they're co-creating. But in general, you're going to lead towards the funny, certainly to begin with. Now, in terms of your classes online would have been perhaps a little bit more difficult in some ways in terms of movement. Was it more about the speech and what was coming out in terms of
 
24:42
ideas or movement was involved in some way? This was a concern I had before I started the study. I wasn't so keen on putting it online because of this thing you're talking about. You need the space, you need that physical interaction, and it becomes very much more difficult. During that time, I was also providing classes. In the end, I ended up providing classes online
 
25:12
and what I did was I delivered film acting for improvisers in a way because then you you are that's what you're doing then we have this aspect of it as well so you've got a frame around you you can improvise within that frame you can still move you can still do physical things and for the classes that's all that was required delivering some more something more means that
 
25:40
we get lots of other film aspects and cinematography and such that can happen. But that's not why I was delivering in the research. Now you spent a lot of time or sometime at least in the US. Can you tell me about your experiences there? Yes. So I assume you're referring to the summer camp again. But I have been around the US in other occasions as well. So part of
 
26:08
of my enjoyment of improv is that I did go over and train and I went to Hollywood which is very nice. Yeah it was nice to train over there so that experience was really useful, it really shaped how we can look at improv more broadly and I think when doing that you could then see how broadly you can teach or apply improv in live.
 
26:38
for autistic people maybe that also helps to be able to understand the form. In my VIVA, it was questioned whether the fact that because of COVID I was delivering the teaching, which was not the original plan. They questioned me on this matter, like did that impact the research? And actually it did because I have a lot of experience with autistic people and have a lot of experience with improv, these things.
 
27:07
coincided in a way that's actually really conducive to the outcome that was being sought. I originally wanted to bring in a really experienced improv teacher and I wanted an autistic teaching assistant which I ended up having in my study anyway, but originally the plan was to have them both there at the beginning. So that change matters and I think my experiences in the US really helped.
 
27:35
in the way that I could think about the pedagogy being delivered and how that could be framed. And it was, there's a vast amount of time between my first experience in the United States and now and obviously that bit in between. And from going from that initial experience of delivering improv for predominantly autistic kids, that that
 
28:05
Progress was quite an interesting one because obviously, it was only really beginning back then, an improv, let alone anything else. So that's the insight I think I can deliver for that question. That's my experiences there. How as a society can we do better for the autistic community? In many, many ways. In many ways. We have to, I believe, we have to stop
 
28:35
creating additional labels that aren't helpful. If we want to meet needs, we have to meet individual needs. We have to listen to autistic people and neurodivergent people, hear their voices and actually do what's required, do what's been said. So that means removing any of the norms that are supposed to exist because why should they exist? There are reasons academically.
 
29:05
but it doesn't work. It doesn't work. So if it's not working, then we need to change fundamentally. So we listen to autistic people, reduce the norms that exist, enable autistic people to engage with. Such things as improv without it being for a reason other than out of interest. That's another thing. Like neurotypical people can go and do improv. It doesn't have to improve their.
 
29:31
communication. They can just go and do it for fun and then eventually they will, as per my interview study, find out actually there's lots of value here and that's different to that. So that's probably my quick to sense, I should say sense, shouldn't I, on that one. Now what does the future hold for you? Are you going to move on in your career as a lecturer or are there other areas of autistic study you'd like to embark on?
 
29:59
Yeah, so at the moment I'm looking at higher education and inclusive pedagogy. I'm interested in mental health and well being obviously, so I'm going to keep with that topic as well. And there's endless endless supply of things I could do. I'm beginning. I'm an early careers research now and early academic, so there's so much I can do and so much that I would like to do isn't.
 
30:28
just about being realistic to these goals. What should I do? But predominantly I'm gonna stick with working with autistic people and that's gonna be the starting point. Well, that sounds really great. I think we've run out a little bit out of time. So you have been listening to DDA's Encouraging Abilities podcast. Our guest today has been Nathan Keates all the way from London, England.
 
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Nathan is a lecturer at the University of Sunderland in London and an expert on how theater and improv can be beneficial for some autistic people. Nathan, thanks again for speaking with me today. Thank you very much. I thoroughly enjoyed it. Thanks for listening. See you next time.
 

Dementia and Alzheimer’s - When Caregiving is Vital

At some point in our lives, we will all be touched by dementia or Alzheimer's disease. Unfortunately, in the developmental disability community, these conditions are more likely to show up. We connect with Karen Tyrell, author of Cracking the Dementia Code and consultant to the DDA community.
 
TRANSCRIPT
 
Dementia and Alzheimer’s – When Caregiving is Vital
 
00:05
Welcome once again to DDA's Encouraging Abilities podcast. I'm your host, Evan Kelly, Communications Manager here at Developmental Disabilities Association. Today we are talking about aging and dementia and Alzheimer's in people who have developmental disabilities. Dementia and Alzheimer's can be hard on people with developmental disabilities in the community because they can be at higher risk of developing the conditions. And we'll talk a little bit more about that in a moment.
 
00:31
Advances in healthcare also mean that people with developmental disabilities are living longer, thus creating the need for understanding how caregivers can deal with the onset of conditions like dementia or Alzheimer's. Joining me today to talk about this is Karen Tyrell, who recently was contracted here to provide regular dementia care to frontline staff and management teams. So next week will have been four workshops so far.
 
00:59
So Karen is a certified professional consultant on aging and a certified dementia care provider with a passion for improving dementia care. She is the owner and operator of Dementia Solutions and offers education and support for families and caregivers when it comes to aging with these conditions. She is the author of a book called Cracking the Dementia Code, Creative Solutions to Cope with Changed Behaviors. Also a therapeutic coloring book for adults.
 
01:27
and is the co-creator of an app that offers solutions when dealing with those with dementia and Alzheimer's, all of which can be found on their website, Deme So Karen, thank you for joining me today. Well, thank you for inviting me, Evan. This is great. So you've been in this industry since 1995. What got you into it? Well, at that age, I was just finishing high school.
 
01:53
and I wasn't sure which direction to take, whether to work with children or adolescents, or I wasn't quite sure. I did some volunteer work and I found out it was definitely older adults. I really enjoyed my time volunteering in a long-term care home. So then ever since I have been on a path and I went to take a program in school,
 
02:18
that was in Toronto, Ontario, where it was gerontology based, but it was therapeutic recreation. And that program actually had me do practicum twice a week and learning theory three days a week. So I was really able to get a sense of what the real world was like. And working in long-term care, I experienced many situations with individuals with dementia.
 
02:47
And that's where my passion started right away, wanting to make a difference for these individuals in all stages. Now, can you define dementia versus Alzheimer's? Sure. So let me just start by saying Alzheimer's disease is a disease. Dementia, a lot of people think it's a disease on its own, but it's not.
 
03:13
So dementia, if you can picture your hand, and I'm going to make you make a fist, and each finger would be a symptom. And when you close your fist, it creates a syndrome. So what dementia is, is a syndrome that is made up of, I'm gonna say here, five common symptoms. Now let me just give another example of a common cold.
 
03:41
When we get a common cold, it's not a disease, but we get symptoms like runny nose, headache, sore throat, coughing. When we get all these symptoms, oh no, we got a cold, great, this is fun. But those symptoms typically fade away. But a cold is a syndrome. So dementia is a syndrome. And the common symptoms that we do see, and I'm just going to share a few of them, is
 
04:11
Poor memory. Of course, a lot of people know this is very common when we see somebody with memory impairment. That is a symptom. Another symptom is poor thinking abilities. So difficulty making decisions, difficulty with figuring out how to get from their home to the grocery store perhaps, where they used to be able to know how to do that, or difficulties thinking how to make a big meal.
 
04:39
So thinking impairment does show up. We also see judgment impairment. So some people making inappropriate decisions around safety, their safety, the safety of others, or decisions that are poor around saying things inappropriately in public. So there's lots of examples, you know, people using a chair that has wheels.
 
05:05
to reach for something in their cupboard. So, you know, little things like that start to change for judgment. And then the other common symptom I want to share is communication difficulties. So sometimes we will see an individual having difficulties making a sentence, a proper sentence, or finding the right word for things, but...
 
05:24
what happens is not the normal aging. Normal aging would be, oh, what's the word? It starts with an A. You know, you put it with your, you know, your tacos. Okay, it's avocado, you know. So, it's basically switching up a different word, using a completely different word to explain what they're talking about. Or they're having difficulties comprehending what people are saying, even though they're speaking the right language.
 
05:50
the comprehension has now been compromised. So that's another common symptom. And the last symptom I want to share is personality changes. When we see the person no longer behaving in similar ways or have similar interests anymore, or maybe let's say they were always so patient and understanding and happy to be around, now you visit with them and they're not very happy. They're complaining all the time or they're...
 
06:18
you know, why am I doing this? Why are you here? I don't want you here. Where they were never like that. So these are just some examples. So when we see all these changes in a person and they're all happening frequently and more on a consistent basis, because we all have our days, haven't we? You know, we forget things or we, you know, we have our moments. I have my moments.
 
06:42
But when it's happening to someone and the family start to realize, boy, this is happening a lot more and we're seeing it almost daily now, this is when we need to say, okay, let's go get this person checked because maybe they do have the syndrome of dementia. And maybe a clinician will say, yeah, we have all the symptoms of dementia. But the next question really should be, what is causing dementia?
 
07:08
What is causing this person to experience those symptoms? Because it could be because those same symptoms are within Alzheimer's disease. So is it Alzheimer's disease? But there's been cases where people have had all those symptoms and it's not a progressive type of incurable disease. It's actually something they can treat, which might be related to a vitamin B12 deficiency or even depression.
 
07:37
can show up those symptoms. But if we treat these conditions, the symptoms of dementia can go away. Even a thyroid condition has caused people to feel like they're developing what they call Alzheimer's. I've got Alzheimer's. Well, wait a minute. Let's go look into this a little bit more. So I highly encourage people to go and get this looked at by their family doctor or maybe even a referral to a specialist.
 
08:04
who can tell you what's really going on for you and your symptoms. And I might be getting a little bit ahead here, but we're talking about, you know, like certain symptoms that lead to a syndrome that must be much more difficult to define for people with cognitive disabilities. Yeah. So some people themselves that starting to show these symptoms may not recognize it in themselves. It's usually the family or friends or neighbors.
 
08:32
that are the ones to point out, well, wait a minute, things aren't quite right here. Um, yeah. And there is, you know, I thought I'd know what there is a condition that happens in people's brain that is common with dementia and it's called, are you ready for it? I am. Anasognosia. Says what? Anasognosia. And so if we want to spell it out, it's A-N-O.
 
09:01
S O G N O S I A. Okay, anosognosia. Gotcha. Yeah. Sognosia. So this really means no awareness of illness. So there are people that also have dementia and anosognosia where they think they have nothing wrong with them. They can still drive perfectly. They still know where they're going. They have a perfect memory.
 
09:29
but family friends will go whoa no no no no you're you're having trouble but they will disagree some people call it denial that the person doesn't think they have anything wrong with them and they're denying it but it really is a condition in eighty percent of people with dementia will also have anaphyl agnosia so it can be a challenge for families to try to convince someone to go to their doctor when they have this
 
09:58
Now Alzheimer's on the other hand. So, yes, Alzheimer's disease is a disease that Dr. Alzheimer discovered well over a hundred years ago now. And when he did the autopsies on his patients who were living life with similar types of symptoms that were getting worse and worse over time and similar changes to their, their function, their day to day.
 
10:28
When he did the autopsies on them, he discovered in the brain abnormal and excessive amyloid plaque. So plaque was excessive in their brain as well as what they call tangles, the neurofibular tangles, inside the neurons. So these two things, the amyloid plaque and the neurofibular tangles, were what...
 
10:55
he discovered was abundant in the brains of the people he was supporting. And therefore it, it, it, you know, eventually turned into what's known as Alzheimer's disease right now. And sadly, you know, the brain eventually shrinks because of the damage that's being done. The neurons are dying because they're no longer functioning and communicating.
 
11:22
The amyloid plaque basically is surrounding the neurons and causing them not to be able to fire their messages to one another and it's just so much garbage and sticky plaque that's just built up in the brain that is not allowing it to function the way it used to. But we do notice with Alzheimer's disease that it starts in the hippocampus of the brain and this in our brains is where our memory
 
11:51
and our learning takes place. Sadly, that's where Alzheimer's disease attacks first. And it really causes damage moving outward, almost like spreading like a little bit of a virus. And this is how we know when people are in the earlier stages, middle stages, later stages. It tends to go slowly around the brain to eventually we're dealing with a person who no longer knows how to walk or talk.
 
12:20
feed themselves, toilet themselves, that sort of thing. And it's really, really heartbreaking to watch a person go through that journey. Oh, absolutely, absolutely is. And again, if we're talking about people with cognitive disabilities, that might be another thing that's difficult to diagnose. Okay, so when you're talking with adults with a cognitive disability similar to maybe like a Down syndrome condition?
 
12:49
Yeah, it can be very difficult to diagnose. This is where the caregivers, the people that are front line with them as their primary caregivers every day, would likely start to notice some changes. This is not normally their personality, and this is not normally them having difficulty with their words and speaking, and they're really forgetful. And I just told them a sentence.
 
13:16
five minutes ago, but they can't recall even what I just told them. So people will start to notice eventually, but may not right away. But because usually with Alzheimer's disease in the earlier stages, it could be between two to four years before people get help because they don't see it. Maybe four years later. Yeah. It might, it's to those on the outside. It might not be as, as obvious because it might be such a gradual turn. It is gradual. Yeah.
 
13:46
So, but again, all we can do is rely on those frontline people to speak up and say something and then from there, let's get that person diagnosed and let's hope it is something that is treatable, like maybe a vitamin deficiency or something else that might be going on. But unfortunately, in the world of a person who has Down syndrome,
 
14:09
The sad part is that these individuals, as we know, have an extra chromosome. And this is chromosome 21. And the interesting thing here is that chromosome 21 is the chromosome that does have excessive plaque. It's responsible for producing the specific protein that is in excess.
 
14:36
for all of them to be like we see abundance of it. So when a person only has two chromosomes, there are, you know, they could have the chromosome gene, sorry, sorry, the chromosome has the gene that's responsible for the plaque. So if we're carrying that gene, we might have more of a chance or a risk of developing Alzheimer's. But when we have a third chromosome, it increases our risk. Do we know sort of what percent of a risk that might increase?
 
15:06
Yes, unfortunately, people with Down syndrome will have, well actually I don't know if I have that exact percentage. I'd have to look through my notes again, but I know it is significantly higher. What we do know is that people who are in their 50s have a 30% chance.
 
15:35
of developing all time and just the typically public in the story and and people who have down boys and now what the all barra society canada stand at statistics show is that people over the age of sixty five uh... they have and and more increased red of developing all time and fifty and i remember when i was working with the all time or society and
 
16:05
I was doing some presentations where I had to say one in 13 Canadians over the age of 65 are developing dementia. And then a few years later, that number changed and it was one in 11 Canadians over the age of 65. Now they don't use those numbers anymore, but they are saying currently half a million Canadians.
 
16:31
over the age of 65 are developing some form of dementia. But with people with Down syndrome, they're saying 30% of these individuals in their 50s are developing Alzheimer's disease. And then the statistics are showing that 50% or more are affecting the people in their 60s who have Down syndrome. So the numbers are.
 
16:58
Increasing faster and faster because the numbers go up every year after a person turned 60. That's very interesting. I mean, is it because we're recognizing it more or is there actually a problem? We're aging and we're aging longer and living longer. Right.
 
17:20
So the interesting thing is that years ago, 40 was over the hill and now people are living over a hundred years old. Like we're moving that life expectancy number over the age of 80 now. But people are living longer. Now there has been some information that came out of the United States that said in 2020,
 
17:48
the life expectancy for people with Down syndrome was age 60. And that compared to what it used to be in 1983. In 83, the life expectancy for somebody with Down syndrome was 35 years old. Wow. That says a lot about our health care, right? Yeah. So we're living longer. People with Down syndrome are also living longer to age 60. And so, sadly,
 
18:15
Years ago, I remember learning in school back in the mid-90s. There was almost like 99% of all people with Down syndrome would develop Alzheimer's disease. Now, I don't know if that number has changed. I think I remember reading it was lower now. However, because of that extra chromosome,
 
18:39
these individuals are more at risk of having excessive amount of plaque in their brain. Yeah, that's a huge percentage of the population. What about of the population with Down syndrome, I mean, like what about drug therapies? Or is any of this advancing? Well, so.
 
18:58
for many, many years. Actually, when I was first going to school in the mid-90s, I learned about the very first drug that was approved for supporting people with Alzheimer's disease, and it was called Aricept, also known as Denefazil here in Canada. That's been around for a while, and that's the very first drug. What it does is basically it's trying to help add what's known as
 
19:22
acetylcholine in our brain, so add more of it, because that acetylcholine is helping the brain neurons fire the message to the next neuron. And so to help it, because sometimes that gap is between the two neurons is growing and that neuron can't fire the message, but the acetylcholine can help. So the medication is helping people to fire messages better. And then there were two other medications from two other drug companies that basically are doing the same thing.
 
19:51
possible drugs on the market. One of them was a patch if people couldn't do the oral medication. So it's been really frustrating over the years. They tried to have a vaccine. Those studies had to be ended because of brain hemorrhaging when they went to human trials. There was so many attempts, but the last few years a drug did try to come out that was
 
20:19
helping to remove that amyloid plaque that I talked about. And so this drug had some controversy in the last few years because it came out saying it worked and then it didn't work and then it, oh no, no, no, it really did work. And so the Food and Drug Administration, the FDA, in the United States approved it and said, okay, we're gonna approve this drug now.
 
20:43
for use in the United States. It's not approved here in Canada, but so there's still, the jury's out for a lot of people on this type of drug, very, very expensive, and it's not a cure, but they're saying that in the studies and the trials that it did reduce some of that amyloid plaque, basically delaying the process of Alzheimer's disease.
 
21:13
workshops here, can you take me through, like when you're coming to DDA to talk to our caregivers, and we employ many because we have 19 group homes, we look after lots of people, take me through that process. What is it you're trying to impart to our caregivers to deal with these kind of situations?
 
21:31
Sure, I've had fun so far. It's been great. We've had full classrooms and lots of great participation. So basically, I am going through a reminder review of what is dementia, a review about what is delirium because a lot of people can mix up because there's a difference between delirium and dementia. And delirium, for those that are not familiar, it is a sudden onset
 
21:57
like suddenly similar symptoms to dementia, where there's, wow, they're not themselves, their, their, their personality certainly has changed. They're having troubles remembering, they're having troubles with their thinking and their poor judgment. And, you know, they're trying to stand up when they were told, sit in the chair because you just had a hip replacement and, you know, whatever it might be, they're doing things that are just off, you know, not who they normally are.
 
22:22
And so when we see sudden changes, I want all frontline staff to report that because a sudden change can mean delirium and delirium is treatable. But we need to recognize delirium and we need to get help because delirium is often due to pain, dehydration, maybe a urinary tract infection or any kind of infection. And these need help. So like hydration is needed for dehydration. Antibiotics for any kind of infection.
 
22:51
pain management for pain. So there's a variety of others, but just trying to help the frontline staff recognize delirium is treatable. If you see changes in the person you're caring for, talk to a nurse or a manager. I will do the overview of Alzheimer's disease for the groups and also what are the stages and what common things do we see in each stage so they can recognize the changes in their own clients and residents.
 
23:19
And I do share some of the statistics I shared with you about Down syndrome and the impact with dementia that it has on an individual. And the, you know, also that, which I didn't mention to you, is that with Alzheimer's disease, it's usually a very slow and long journey, which could last 20 years or more for some people.
 
23:48
diagnosed with Down syndrome, their length of time with this journey is between 9 to 11 years only. So it can come really fast and so having them aware of the different changes, different stages and I give them ways to cope with those changes. And I also give them some strategies on what we do when a person's behaviour
 
24:14
starts to really change because of their poor memory, their poor thinking, their poor judgment, their behaviors will change. So I give them strategies on how to cope with that. And then reminding them about, hey, you know, as they're changing, we still need to remember this is a person, this is an individual who has their own values and history and stories and, you know, abilities and disabilities. So we still need to work with them
 
24:43
using person-centered care. So reminding about what person-centered care looks like and
 
24:50
communication tips on how we can talk to somebody who has now difficulties with comprehension. So teaching them the communication tips and just reminding them of some self-care reminders for them because these frontline workers are so important and a lot of them don't realize that. So I really want everybody who's frontline to know how valuable they are in the work that they do and I really think that they deserve the recognition and the validation
 
25:20
So keep giving them self-care reminders is always important. Absolutely. These people are like family, right? So they are not just employees to us, they're vital to what we do. So from your point of view, when do people need to start seeking support?
 
25:42
and the individual themselves are they can't find workers i guess it is for the caregivers yet caregivers frontline workers even family members when you need to start looking out looking for support my suggestion is and possible and as you realize something going on here that looks like dementia if we can get connected to support whether it be
 
26:09
you know, just because knowledge is power. So building up your power by getting the information so you can understand what you're dealing with and how you can best cope through it. So I think right away, find the support people who can be in your corner when you have questions or when you have concerns.
 
26:30
And this could also be in the form of a group support where other family members, other caregivers come together and it's about an hour, an hour and a half type of situation where you can learn from each other, hear their stories, learn ways that they're coping and it could spark ideas for you. It may not be necessarily the exact scenario you're going through, but when people are together and they're listening to one another who are in
 
26:59
somewhat of a similar scenario, they don't feel alone. And that's a big thing, that's huge. I do a lot of caregiver support groups and that's one message I hear, gosh, I'm so happy to be here. I don't feel alone anymore. And that's huge. And that must be, I mean, even, you know, for typically developed people who are showing these signs, I mean, family members and caregivers must experience a lot of pushback, you know, like I'm fine, leave me alone kind of thing. How do you try and coax
 
27:29
in a nice way that, hey, there's something going on here and we need to check this out. Well, what I like to try, everyone will be different, but I do like to try to say, it looks like you're at an age where some people could develop low B12, and then maybe, let's go get your vitamin levels checked. So, approaching it in a different way to get to the
 
27:57
in the form of let's go get things looked at just in case it might be related to your thyroid. But not to mention the word dementia, never mention the word Alzheimer's disease in the beginning, just to get them into the doctor. But then to tell those family members to reach out to the family doctor in advance, talk to their secretary, whatever it might be, email if you can, to say I'm
 
28:27
you look into this. So that's one way to try to get them looked at by a professional without raising their, you know, their back up and trying to dig in their heels. I'm not going to get my brain checked. My brain is fine. Using another excuse to get to the doctor. Or one other family recently said, oh, it's your regular yearly appointment, wink, wink kind of thing. It wasn't quite a year, but you know.
 
28:54
then they weren't going yearly, but it's basically saying, time to go, or some families have contacted the family doctor, they please call my mom on Tuesday, I'll be there all day, and just say it's time for your appointment, so it doesn't come from me. Because sometimes when the families are trying to suggest mom or dad, whoever, to go to their doctor, they think that they're
 
29:18
suspicious and they're up to something. So they don't listen to their family member. But when it comes through by another, an outsider, like the doctor's office, they may go to their doctor. So there's the different strategies we try to use in order to encourage a person to seek more help. Now here in Canada or British Columbia, is there enough support for families for people with dementia and Alzheimer's?
 
29:46
Well, in my opinion, no. Is this, you know, perfect around the world? No. You know, this is a population that we can do better, we can do better. There's been challenges where even the family doctor has told the family caregiver
 
30:13
get out of my office, I'm not talking to you, you're not my patient. Whereas the family is just trying to get that doctor to understand, to see a problem. But sometimes only a 20-minute visit doesn't prove the person has cognitive challenges and therefore it takes longer to get a diagnosis. So in my opinion, we need family doctors to understand the value of the family caregivers and not to think that they're trying to...
 
30:39
set them up or gaslighting or anything like that, they're actually noticing something. So I'd love to see that stop. And then when they do get a diagnosis, there is a program which I'm so thrilled to see, and I remember being a part of the pilot project in Ontario called First Link.
 
30:59
with the Alzheimer's Society across Canada. And BC also has that first link program. So some doctors are on board with this and are really referring right away the families who they've noticed received a diagnosis into this first link program where they can then have a caller call every few months to check in on the family from the Alzheimer's Society. How are things going? What help do you need now with? Unfortunately, that program's not perfect either.
 
31:27
because sometimes the family caregiver can't speak on the phone because the person with dementia is in the room when they call and they don't want the Alzheimer Society phone number to show up on the call display because the person is experiencing anosognosia and therefore would be very offended if they're getting calls from the Alzheimer Society or if the person is speaking to other people on the phone about them.
 
31:52
So I wish there was more undercover type of support being offered to families. Interesting. And so that's a little bit of what I do is I'm available for families whenever they need to call me. And so yesterday I get a text message, Sunday afternoon, I need to talk.
 
32:11
You know, I text back, give me five minutes, you know, and I'll give you a call. So I like to be there for when families need it. And I wish there was a service like that for all of BC where families can call 24 hours a day because dementia is definitely not nine to five Monday to Friday. Definitely not. So families do need that outside the hour support of what do I do now? They're trying to wander. What do I do now? They're not taking their meds. What do I do now? She's screaming at me. She thinks she has to go to work.
 
32:41
PM at night and trying to leave the house. So these types of challenges families could use more support, a go-to place, other than me. Yeah. Now, because I have a friend of mine is launching a very similar business to what you do and so and I hadn't even heard of this kind of business that you and she do and it's almost like it's a growth industry. It's almost like we're kind of playing catch-up. Does it feel like that for you? Oh gosh.
 
33:08
Absolutely. And we've called this whole scenario about Alzheimer's disease or dementia as a rising tide. People have used the analogy tsunami, but no, we knew about it. It wasn't a shock to us that we're now swimming with so many people affected by Alzheimer's disease or another type of dementia. So we are up to our necks right now and we need more.
 
33:34
people to go to because families are stressed out. They can't do this alone. People with advanced dementia have more challenges that one person can handle. They need home support. They need 24-hour monitoring. And the caregiver can't stay there 24 hours a day, seven days a week without help or without getting out, without... ..
 
33:56
survival tips for themselves and the costs are also quite high and the frontline workers are not in demand like they're sorry highly in demand and they're not there to take over all of the shifts that are needed and required for people whether through the health authority or through private organizations
 
34:17
there is a shortage of frontline workers who are trained and compassionate using the right person-centred techniques in dementia care. So that's another problem. So there's so many challenges that, you know, and then caregiver support groups, we need more of these options for people.
 
34:39
that can be done over the computer now. Because people often can't leave their homes. So having now that COVID has introduced so more and more people using computers like Zoom or Teams, this is great to help these families who are isolated.
 
34:59
So much more could be done and I'm happy to brainstorm and share all of this if anyone will listen, but there's so much more I can talk about. Now let's shift gears a bit. Cracking the Dementia Code. Why did you write this book? Well, when I was working in Ontario, long-term care home, plus I was also working as an executive director for an Alzheimer's Society.
 
35:28
what things are like in the community for families as well as what it's like in long-term care. And the biggest stressor is when people start to develop the changes in their behaviors. What do I do? How do I say this? What do I say? Why can't I tell them their mom is dead? Why, you know, and, you know, so questions that a lot of families didn't know how to handle the behaviors. When I moved to BC in 2009, I was hopeful that BC would have been more advanced than Ontario was.
 
35:58
I really wanted to see things improve. Sadly, it wasn't the case. It was actually the opposite. Actually, when I realized, I looked into the situation and it appeared to me that BC was actually 15 years behind Ontario. And I was devastated and I felt as though there was no real support. There was no dementia care networks here, which I was a part of in Ontario, where these networks were people, businesses, families,
 
36:28
doctors, everyone coming together to really talk about dementia in their communities. But when I moved to BC, there's none of that. I volunteered for the Alzheimer's Society when I arrived and I saw the gap. And I also saw when I was working in a long-term care home, because I started back in long-term care here at BC, that the staff were doing approaches that were pretty much back from when I was starting in the field in 1995.
 
36:57
And it was just really upsetting to me. And I thought, I can't sit and wait for the government to make changes. And boy, when I look back, and it's been over 14 years now, I am so happy I took action and I created a workshop called Cracking the Dementia Code. And I had in mind the people that I saw making the inappropriate approaches in mind.
 
37:20
what would I do to want to teach them in an easy to understand way because English was not always their first language. So I made this workshop and I put it on for families and I put it on and I offered it to frontline workers. Over the years it's been keeping me busy providing this workshop in person. And then I decided that after receiving many phone calls, I hear you've got a great workshop I'd like to attend, but I'm in Alberta, or I'd like to attend, but I can't, I'm in the interior.
 
37:49
And so after word of mouth growing, I decided to write the book. So basically, I was taking all the material from the workshop, but adding in more, adding in so many more extra chapters because it's only a three-hour workshop that I do. So I wanted to provide that extra. And so I, it just fell into my lap, an opportunity to write. And here I am. I have this published book, which I am getting feedback is.
 
38:12
so heartwarming and uplifting that this book has really helped a lot of families and the frontline caregivers. So I'm just going to continue to go with the flow and really do my best to give the information. And I'm just so excited that I have this opportunity with the Developmental Disabilities Association here in BC to educate their staff and inspire them to continue to give great work. And just a side note, that book is available on Amazon as well as your website. It was
 
38:40
But that has also of course led to here in the digital age as an app that you've developed with a couple of people. Can you tell me about that? Oh yes. So I connected with somebody on LinkedIn who was really passionate about dementia care as well. And she reached out to me and I assisted her with her book on ways to care for a husband with dementia. She's a social worker, so she really focused in on caring for husbands.
 
39:08
And between the two of us, we decided, you know, it would be really helpful to have an app that was developed for people to have quick solutions at their fingertips. So her name is Angela Gentile, and she's in Manitoba, and her son does apps. So he helped us to do the actual app, but Angela and I co-created all the content for this app of ways that, and so it's called Dementia Caregiver Solutions app.
 
39:37
and it had a lot of solutions on how to handle common day-to-day issues that can arise for people that are living with dementia symptoms. Now, is that available on just on the app, any old the app store and Google Play? Yeah, it's only on the, sorry, it's not an, it's only an, sorry, not an Android, it's only an... Apple. ..an ISO or iOS. iOS, iOS. I always get that up, iOS. So, we were only able to make the one type of app.
 
40:07
I would love to see it on others because I have an Android, but I think over time things may develop and change.
 
40:16
But yeah, moving things, even my workshops, all online now, having to go to that online group to support people because we're now in a digital world, but still trying to make sure we support the people who aren't doing the digital world. Yeah, exactly. And that's a lot of people, especially in the aging community. There's people that just aren't as technical. So before we wrap things up, how do people get in touch with you?
 
40:42
Well, they can go to my website, Deme There's a contact us form that they can type in or call our phone number that's on the R1888 number.
 
40:57
I'm always happy to support families. We always give a free 20 minute consultation for families that are struggling, whether they're dealing with Alzheimer's disease or any other type of dementia. So we start there and then we encourage them to come to our free support groups that we do twice a month.
 
41:15
And if people can't come to the support groups on Zoom, because they don't do Zoom, they can call in and I'll just hold the phone up and we've got them on speakerphone so they can still listen. We've done that before. Is that mostly on Zoom or you do do in-person stuff as well? I do in-person, but currently all the support groups that I was doing prior to COVID all got shut down. And so now I'm only doing a support group in Coquitlam.
 
41:45
at the dogwood civilian but i also do support groups within long-term care home so they bring me and monthly i do support groups for the family there let sounds good i think we've covered a lot of bases here karen anything else to add today well you know if i can just quickly say that and i worry about caregivers i've always worried about them and that why i wanted to create the book
 
42:14
the part that can cause burnout. And I don't want caregivers to burn out. And so if I can quickly share three things quickly, if people are listening, if you are a caregiver, please, please, please, from my experience as a dementia consultant over these years, respite, time off is so important and people don't realize that until they take the time off. So please respite, number one.
 
42:35
Number two, talk things out if you're stressed. Go to a support group, talk to a counselor, talk to a dementia consultant, whoever it might be that can help you with the Alzheimer's Society. You've got to get it out, talk things out because you're going to learn things and you're going to hear things differently. And number three is never stop learning. So learn about the condition you're dealing with, learn about ways to cope. For me, those are the top three strategies for caregivers to survive.
 
43:03
It's really great having someone like you in our corner to provide these kind of services. So thank you very, very much from BDA. You have been listening to DDA's Encouraging Abilities podcast. Our guest today has been Karen Tyrell, an expert and author on providing care for loved ones facing dementia and Alzheimer's, conditions that we know of course can affect people with developmental disabilities at a higher rate. You can find more information on our company and our books at Deme Karen, thanks again for joining me today.
 
43:32
Thank you once again for having me. I appreciate it. Thanks for listening. See you next time.
 

Looking to the Future of Caregiving: Artifical Intelligence

Good caregivers are few and far between. It's a tough sector to keep staff for several reasons. So what's the answer for supporting an aging population or people with disabilities? Artificial Intelligence is already starting to play a role. We caught up with Mercer Gary from Drexel University in Pennsylvania about the positives and some ethical concerns when it comes to AI and caregiving.
 
TRANSCRIPT
 
Looking to the Future of Caregiving: Artificial Intelligence
00:03
Welcome once again to DDA's podcast, encouraging abilities. I'm your host, DDA communications manager, Evan Kelly. Now I just want a little caveat at the top of this, um, because we are talking about caregiving now, just to understand that developmental disabilities association, DDA is a community living agency that provides over 50 community based programs and services to children and adults with developmental disabilities and their families here in Vancouver and Richmond, British Columbia. So today we are talking about a topic that
 
00:33
It's kind of front and center a lot in the media these days and we're wondering about it how it might affect our lives That is artificial intelligence with the advent of online AI such as chat GPT and other applications for Video and music you name it AI seems to be paving the way forward in many respects But what are the limitations is it good for us is it bad? So today I'm joined by Mercer Gary she is a poss
 
01:00
postdoctoral fellow at the Hastings Center, assistant professor of philosophy at Drexel University in Pennsylvania. She has a PhD in philosophy and women's gender and sexuality studies from the Pennsylvania State University. She looks at conceptual questions and feminist ethics around normative significance of relationships in order to strengthen applied interventions in bioethics and ethics of technology. So,
 
01:29
That's a lot to take in to see with that. I'm not even sure what I read, but definitely some high level thinking there. Thinking there. So thank you for joining me today, Mercer. Great to be here. Thanks for having me. Now I wanted to talk to you because DDA, as I said, is a community living agency. We employ many people in the caregiving field, like in the hundreds, to be clear. And it's a field that is often tough to keep staffed, whether it's lower wages, the battle for the high cost of living here in twenty three, twenty
 
01:59
particularly here in the lower mainland of British Columbia where housing costs are crazy. Also, with the caregiving field, schedules are all over the map. I mean, we have care that is 24-7. Also, with other options, maybe the caregiving field is simply not as attractive as a job. So right now, we're running the risk of not having enough people to look after the most vulnerable. So that's where artificial intelligence...
 
02:28
may come into play, can AI at some point be used to help care for seniors or those with disabilities? Now many companies are developing technology to assist with caregiving and even DDA is working with a local team called Three Spheres of Reciprocity to develop a robot to assist our caregivers. They've actually developed two different kinds of robots at the moment. We're a long way I think from implementing things, but at least it's being looked at. So Mercer, let's get right into it. What...
 
02:56
What got you interested in the line of study that you do? Sure. So my expertise is in feminist care theory, which is kind of an umbrella term that spans some different approaches, but generally is interested in care as both a source of ethical value and a kind of relationship and as a marginalized kind of labor.
 
03:25
So it's really important to me to take into consideration both the side of the person receiving care and the need for receiving care that is dignifying, that is respectful, and that is meeting their needs, while also taking very seriously the way that care work is devalued socially and economically in our society.
 
03:51
and has been historically and currently delegated to some of the most marginalized people, predominantly women of color today. And so my first interest in AI and care came with the advent of social robots that you're already referring to, robots with some kind of capacity for learning, machine learning typically. And this led me to two major questions that have grown in my research.
 
04:20
One is a more abstract one within feminist ethics and the other is a more practical, concrete one in kind of feminist sociology, feminist economics of care. So in feminist ethics, the
 
04:38
The framework of care ethics is grounded in intersubjective relationships and says that those relationships are themselves valuable in a way that's often overlooked and also can give rise to ethical dispositions and ways of thinking about ethics that have not been emphasized in the history of moral philosophy.
 
05:06
So if we're focusing on that central caregiving relationship, it's a pretty big question, who can be party to that relationship? What does that relationship look like? And so when I first started hearing about these social robots, it proved to be a pretty interesting test case of kind of how far does this notion of the caring relationship extend and could it include something like...
 
05:33
a social robot or do we want to draw a line before we include technology in that relationship? So that question became especially interesting because people do seem to develop intense attachments to many social robots and especially ones designed to function as companions.
 
05:58
But a lot of people have some squeamishness and hesitation about the kinds of connections people feel, users feel. And I think there are really philosophically interesting questions about whether that kind of connection between a human user and a robot is capable of generating the same kinds of connections.
 
06:23
ethical value that we typically think of when we think of care. So when we think of AI looking after people, what is the actual potential in your mind?
 
06:37
Yeah, so I think that what's most interesting are the ways that AI might be able to assist us in supporting and valorizing human caregiving work. So I think both because of technological limitations and because of ethical and economic concerns about putting AI in the position of being the sole caregiver, we instead really wanna be thinking about AI in the supporting role.
 
07:06
And so what can artificial intelligence, whether that comes in the form of an AI-driven social robot, or whether it's an algorithm in an electronic chart or a monitoring system in a person's home, how can we use these technologies? And there's such a range of them under this broad umbrella of AI.
 
07:35
to support the real human caregivers, many of whom are unpaid and drastically overburdened, and the people in need of care, many of whom don't have enough say in the direction of their care and enough ability of self-determination within care processes, regardless of their ability. How can AI contribute to making...
 
08:04
the giving and receiving of care better for the people involved. Yeah, exactly. And now, as I mentioned, DDA is working on creating this this robot called Aether. And at the moment, the design is really to have this sort of robot roam around like a group home, for example, looking for spills, looking for, you know, if someone who's fallen and needs help.
 
08:31
you know, maybe identifying an open door or something like that. And even getting to, you know, hoping to get it to sort of recognize people's faces and be able to interact, monitor, you know, medicine timing for medicine, medicine intake, that kind of thing. We're still a little bit a little bit away from that, but I have seen it sort of in practice. What in your experience, what have you seen in terms of practice in the care setting? What are some success stories?
 
09:00
What are some failures or things you might be concerned about? So I've definitely seen robots like the kind you're describing, and they're used in all sorts of things. I mean, they're using customer service. They kind of roam some grocery stores now in different parts of the US and Europe, especially. And there have been...
 
09:27
some significant successes with those kinds of technologies. I think another one that has had some success is a larger robot designed to assist caregiving staff in moving patients, helping someone, pick someone up to both protect the
 
09:54
bodies of the care workers from injury and to make sure that people are, you know, being moved in the ways that they need to in order to not develop sores, etc. So that, I think, has been a significant success in some places. When we think about AI, we think about the
 
10:15
generative AI like chat GPT in the caregiving sector, I think that there's real potential for using it to synthesize research and get kind of a leg up on what is a really vast body of academic research that has the potential to contribute to important policy and practice
 
10:41
but can take a single researcher much longer to do analog by themselves. So those are some different useful ways of employing AI in the care sector. Do you feel this is moving at a... are we starting to embrace this too quickly?
 
11:09
So I think that what is definitely already happening is that these technologies are being driven by commercial demands, market demands. And so what's getting developed and what's getting rolled out?
 
11:34
is heavily influenced by what's going to be most profitable. And so I think what we may be doing too quickly is kind of settling in.
 
11:46
into certain grooves of technological development according to what's going to sell and not adequately exploring and developing other avenues that might actually be benefiting caregivers and care receivers more. Mm-hmm. Now, back to sort of talking about care. Care can be a pretty broad term, I guess. To me, it means comfort. Like, it's one thing to have...
 
12:15
something roam around monitoring falls and spills or medication distribution, but how Do you think AI could bridge that emotional gap?
 
12:25
Yeah, so I definitely agree that care is a broad term and people mean a lot of different things by it. And for a lot of scholars of care ethics, the emotional or relational component and often a kind of connection of empathy between parties and a caregiving relationship is really central. And so,
 
12:53
And within that framework, the ability to give care requires moral agency. It requires people to be, it requires someone who is giving care to be an ethical subject, capable of making decisions, acting on them, and responding with empathy. And so there are.
 
13:18
questions, some of them are kind of technical questions of what AI could do or how we could develop it, but some are much more fundamental about is it possible to generate the kind of consciousness, self-awareness, and emotional connection that is characteristic of caregiving in a...
 
13:42
technological artifact and most people are going to say no to that. It's possible. It might be possible. Who knows? I mean, the way the speed at which this is all sort of developing, to me, like having something that can recognize empathy might not be too far away, but it's hard to say at the moment. Yeah. So, I mean, it's...
 
14:07
It's a really interesting, difficult question because it brings us to what empathy is. If empathy is kind of a shared feeling based in shared understanding, shared vulnerability as a number of kind of philosophers will define it.
 
14:31
the lack of vulnerability on the part of a robot means that it cannot have the capacity for empathy in the way that humans experience it. We can think of even, you know...
 
14:48
I'm sitting here with my dog right now and I know that when I'm with my dog and she sees that I'm crying, she will, you know, reach out and lick my face or there are, you know, signs we see at least what we take to be signs of empathy, perhaps not identical to human empathy, but like it in other animals. But there is.
 
15:14
there's a shared condition of vulnerability there. And that is not something that a robot and a human user would share. Yeah, no, that's very true. Some of the, you know, often when we think of care, we think of people I think typically go to to seniors and people who are, you know, aging. But we deal with people with cognitive impairments and developmental disabilities. What concerns would you have
 
15:43
with AI surrounding care with these people, some who might be nonverbal, who just might not be able to communicate as well. So how do we, I'm gonna have this question a lot, how do we bridge that gap with AI? Yeah, absolutely. So I, disability studies is,
 
16:07
also part of my background and something I'm interested in and committed to. And I do think that especially the question of communication with someone who's nonverbal and the kind of really nuanced and, you know, multi-sensory communication that is
 
16:29
necessary to develop over a period of time between a human caregiver and a person receiving care who's nonverbal. That's a level of kind of sophisticated response that is going, seems to me to be difficult to approximate. So that would certainly be a worry. I think
 
16:55
this kind of broader question of what the integration of technology into caregiving does to the social value of care work.
 
17:05
is a big concern for thinking about care in disabled communities as well as in aging populations. So we currently don't, socially, as a North American society, does not value caregiving very much. We don't pay it well. We don't give good working conditions for it. We don't treat it as a prestigious.
 
17:33
or meaningful job, and we expect it to be something that, again, mostly women do on top of other work, and it's their participation in it is assumed and often not even really confronted to. So that we're integrating.
 
17:59
AI, robots and other AI-driven technologies into caregiving, is that saying that the work is so of such little value that we don't even need a human to provide it?
 
18:20
And if that's the case, then what levels of, what kinds of quality control of the care are we willing to put up with, especially for people who are vulnerable? And so I think that maintaining high quality care requires valuing it both economically and socially. Yeah, absolutely. And that's one of the problems. I mean,
 
18:49
You've hit the nail on the head is that we don't value that work which also you mean you could take it one step further Maybe we don't value seniors or we don't value people with developmental disabilities and it's about Shifting that whole thing. So I mean we can spend billions and billions and billions of dollars in developing AI But it might just be easier to pay people more, you know and create that that social shift to get people to understand that
 
19:17
you know, seniors and people with developmental disabilities, which is going to be all of us at some point, we need to treat, treat them like the human beings they are. But that also sort of, you know, pushes my mind into a whole other sort of sphere of looking at like here in British Columbia, we've worked hard over the last 70 years to get rid of institutions. DDA was very instrumental in creating community living and getting people back into the community. If AI advances that much,
 
19:46
I almost see like a step back into an institution in a way where we've got these people housed in this area where it's just covered by AI and nobody else. I mean that's a sort of a nihilistic way of looking at it, but I mean to me the potential's there. Yeah, I definitely think you're not alone in that.
 
20:07
that concern, that's often this kind of institutionalized AI robot run care facility is a real kind of dystopian scenario that people have been warning others about for as long as these robots have been in development. And I think that some of that is real, especially with the price tag of a lot of this technology,
 
20:36
individuals, families, people living in community, but really has to be bought by institutions. But I think there are a couple of things that might actually work in the other direction. And one of those is the possibility of AI-driven technology to support people living in community or living independently longer.
 
21:01
And the kind of development of that technology has been focused on aging populations, especially as we're confronting real growth of the older population in the U.S. and Canada, as some other countries are already experiencing, and a diminishing number of people capable of caring for them.
 
21:30
there are ways that building AI technology into homes can support independent living. And that might come in the form of, as you were discussing earlier, some monitoring systems that would detect whether a fall has taken place or whether someone hasn't moved in a while, and report that through appropriate channels.
 
22:00
So I think there's potential there, but the biggest question is going to be the price tag. Yeah. And I think, you know, the one thing with seniors and people with disabilities or disability community sort of in general is that as loneliness can be a huge factor in their existence. And it would be nice to see if AI, maybe they don't need help getting into bed or something like that. But, you know, having artificial intelligence around.
 
22:29
where you can have a conversation might dispel some of that loneliness in an artificial way, I guess, but it's, you know, in some cases, it might be better than nothing. Yeah, definitely. I think that those kinds of empirical studies which are being conducted and have been for a number of years now are really interesting. People, it, it,
 
22:55
Some of these socially assisted robots, companion robots especially, even with pretty low levels of artificial intelligence integrated, have been shown to act as kind of conversation pieces in a group living environment and in ways that go beyond kind of initial novelty phases, but really kind of sparking conversation between people about what this object even is. Is it alive?
 
23:23
I really like it, I don't know why, that sort of thing. People do form attachments to these robots and name them and have conversations with them and that happens both with people who experience cognitive impairment but also with people who do not have a cognitive impairment and are very, very clear that this is...
 
23:50
You know, this is this is a robot. This is not a living thing but still express affection for it and You know, yeah as you said there there may be situations where it's better than nothing and although we certainly shouldn't lose sight of the Social conditions that are leaving us with nothing if not other than a social robot. No
 
24:17
This AI is obviously probably creating a whole bunch of new laws that we haven't even thought of. I mean, what if there's AI is in the caregiving sector to some level and there's a mistake and someone dies? Who gets the blame for that? Yeah, this is a huge question and figuring out how to ensure
 
24:46
in the, you know, still heavily involved in reviewing, assessing, auditing the tasks accomplished by the AI in order to have that accountability.
 
25:08
absolutely critical. Where there are algorithms being used in hospitals to make decisions about increasing in medication, something of that nature. There's a recent article in the Washington Post, I believe.
 
25:30
about nurses being, human nurses being overridden by artificial intelligence algorithms on clinical decisions like these and that, you know, becoming a serious problem. And so figuring out how we have these checks built into our AI systems that are going to allow humans to assess what they're doing.
 
25:59
and are going to provide enough transparency for that kind of detailed human assessment is going to be crucial if we're going to use AI in the care sector in these ways.
 
26:23
It's such an important aspect for our lives and almost everything we do. You know, we look at technology in cars these days. There's semi-autonomous driving, or some cars are claiming that they can drive by themselves, but it's still such a difficult thing for humans to actually let go of the wheel and let something else control it, even though statistically it might be better.
 
26:51
for, say, fatalities on the road. And so in care, I think that would be the same thing. Like, how do we as humans let go of that? I mean, not let go of trust, but trust something else that isn't human, even though it might actually make a better decision.
 
27:13
Yeah, and I guess I think that for the development of, we can't just increase trust without increasing trustworthiness in the parties that we're trying to trust, right? So we need to make sure that AI is actually trustworthy, that we know its capabilities and they're consistent and they're,
 
27:43
They're consistent, they're transparent, and we know what to expect from them. Obviously trust isn't, trust requires something of a leap of faith and of going beyond what you explicitly know and can control. But there are, I think both technical,
 
28:11
for technical development and and development of human systems of accountability that will be necessary to have uh... a i dot it's trustworthy and so before we can talk about how to increase human trust in a i think focused on making a i'd trustworthy
 
28:37
And that also covers this idea, not even an idea, this fact that AI, like chat GPT for example, has sometimes made things up. I've read stories where lawyers have tried to drop cases and the chat GPT, or one of them, I'm not sure if it was chat GPT, actually made up cases to back up their argument and they were disbarred by using that. So we, it's, you know.
 
29:06
if it makes something up, but we still need to make sure there's some sort of failsafe, that that's not going to happen, particularly in the care or even the medical field. That seems like vitally important.
 
29:17
Yes, absolutely. Yeah, so again, we have to make sure that there are places for humans to be tracking and auditing what an AI system is doing and capable of catching these hallucinations, as they're called. Your, all of your education and expertise is in
 
29:46
largely in ethics. Are we going down the right path when it comes to caregiving? Um, I'm not confident that we are, especially if we're focused on developing caregiving technology that is going to save and make money, rather than thinking about how we're going to
 
30:16
the really disenfranchised people who are both doing the direct giving of care and the direct receiving of care. So I think that a first step is the meaningful integration of direct care workers and people receiving care, especially disabled people, especially older people.
 
30:42
into the development and implementation processes of AI-driven technologies in this sector. So ultimately, I guess, the ideal thing, unless AI was an absolute perfect thing and had, you know, autonomous robots to do things, that a hybrid model is still really the only best model in a sense. Yes.
 
31:11
a way of combining AI-driven systems with human expertise, human connection, and human accountability processes.
 
31:28
So where would people prefer to receive AI care as opposed to human care and vice versa? Yeah, so you know, because caregiving is caregiving in the experience of dependency, interdependency is so stigmatized in a lot of...
 
31:52
North American culture, especially there are a lot of people who say that, you know, they actually would prefer a robot or an AI driven operating system to respond to them in states of need than another human. So this might especially occur with intimate tasks of bathing,
 
32:17
But it also might occur in moments of emotional vulnerability where a person is, you know, disclosing their own emotional psychological difficulties and has feelings of either
 
32:44
shame in showing that to another human being or an increased feeling of dignity in having some kind of distance from the person or object providing for that need. And so this has come up.
 
33:09
both in disabled communities and also in service members, people in the military who have had more difficulty opening up to, say, a human therapist in the room than a distant
 
33:37
technology driven therapy chat bot. Interesting. And so there are both kind of situational and cultural differences around when we feel comfortable receiving care. And in those cases, some people do seem to prefer
 
34:07
assistive technology instead of humans. There are also questions about how people socialize and how people get their social needs met, and that may not be the same for everyone. There are socially assisted robots that have been designed and tested, especially for children on the autism spectrum, and there's been some significant success there.
 
34:33
with these child users feeling much more socially engaged by this technology than they are able to find at least with their peers at a given age, or some peers at a given age. So I think that there are non-trivial connections that AI systems can make possible.
 
35:03
which of these connections are made possible for people, which ones are developed by companies and which ones are affordable and accessible, and who's involved in the design and implementation process. But there are some potential ways that AI-driven technology might be preferable.
 
35:33
True human person people and that's very interesting. So it looks like the future I don't know if it's bright or dark, but it's definitely interesting as we move forward and into the care field and and AI in general Well, you have been listening to DDA encouraging abilities podcast My guest today has been Mercer Gary Paws postdoctoral fellow at the Hastings Center and assistant professor of philosophy at Drexel University in Pennsylvania We're talking about the future of caregiving
 
36:00
through the potential use of artificial intelligence. It's a fascinating discussion, and certainly something to keep our eyes on. Mercer, thank you for joining me today. Thanks so much for having me. Thanks for listening.
 

Making Travel Accessible to the Neurodivergent Community

In this episode of DDA's Encouraging Abilities podcast, we chat with Angela Faminoff, owner of Travel With Ange travel agency based in Victoria, BC. A champion of the disability community, it's her mission to make sure everyone sees the world.
 
TRANSCRIPT
 
Making Travel Accessible to the Neurodivergent Community
 
00:05
Welcome back to another edition of DDA's Encouraging Abilities podcast. We've been doing the podcast for about a year now and this is podcast number 25. So a bit of a milestone, I think. I'm your host, DDA Communications Manager, Evan Kelly. Summer's here, or so they tell me. Here in Richmond, it's still hitting maybe 23 degrees, just barely. In any case, summer for many families means travel, hitting the road, the skies, even the oceans. Today our guest is Angela Faminoff.
 
00:35
owner operator of Travel with Ange. It's someone we've been wanting to talk to for some time now. Travel with Ange operates like any other travel agency. You can find her at TravelWithAnge.ca for any travel needs you might have. But what makes her business different is that her focus for many years has been on the diversability and neurodivergent communities. Travel for families with diverse abilities can be a challenge. Where to go that's adaptive or autism friendly or
 
01:04
simply accessible can be difficult. So, and she helps families navigate these places to find the best and most inclusive holiday fun. So nice to have you on the show, Ang. Hi, thank you so much, Evan, for having me. My pleasure. First off, I have to I have to ask this because your website mentions a love of Scotland. I too have a big connection there. What is yours? Well, oh, I absolutely love Scotland. We immigrated to Canada when I was three.
 
01:31
and so my Scottish roots run deep and very strong. I still have a lot of family living in Scotland and I don't know about you but when you hear the bagpipes I often get quite teary. Oh aye, I too get teary. My great grandmother was born and raised in Edinburgh. That's about the best Scottish brog that I can do there.
 
02:00
So I've definitely got family back there too. And actually I spent about 16 months there straight in, what year was that? It must've been around 2002. So I'm pretty familiar with the area. So- Oh, that is such a cool opportunity. Yeah, it's, you know, you can't replace that for sure. And that's why travel, I think you'll agree is so important when it comes to life. Oh yes. Yes, absolutely. Now you've, you're-
 
02:29
sort of resume on your online as has a lot to do with, you know, being involved in the disability community. So what got you interested in building a travel agency? I think the desire to work from home gives me the flexibility that I can travel with groups. So my desire is to set up groups, we go traveling, we go on cruises together, we go to resorts, we go wherever you want to go.
 
02:58
And so your focus is traveling with people with diverse needs? Absolutely. Um, I would be the host. Um, we would definitely need caregivers and you know, for safety reasons. So I'm not able to perform that role, but I would be the host. I would set it all up. Make sure everything's working at destination or on a cruise or whatnot, and just be there for, you know, any questions and just to get things running as smoothly as possible.
 
03:28
Well, that's great. So you become the de facto tour guide in a sense. Yeah, yeah, definitely. Well, that's really interesting. I actually didn't get that from your website. Oh, sorry. Yeah, no, that's I have some space booked on cruises and we're looking at land resorts and it just.
 
03:49
I would get as much joy out of traveling as the travelers would. So this is why I'm working from home so I can have this flexibility. Well, that sounds amazing. How long have you been doing this? About five years in the travel industry. Now, you didn't just fall into this. You've been involved in the disability community on many levels. Can you talk about that a little bit? Oh, for sure. Gosh, it goes back to...
 
04:17
grade seven, middle school. We actually had a program at our school that gave us the opportunity to volunteer at a day program. And I just fell in love with the amazing communities, narrow, divergent, diversities. And pretty much my entire working career, other than a stint at McDonald's when I was 16, has been involved with this.
 
04:46
amazing demographic. I went to high school, there was a specific program that gave us practicum experience. It's opened so many doors. When I was in high school and college, all my part-time jobs, I worked one-on-one in folks homes with a lot of the kiddos that I met in the preschool. Oh, my summer jobs back in the day. I grew up in Guelph, Ontario, and they had this camp called Rainbow Day Camp.
 
05:15
in the 80s. And this camp was way ahead of its time with inclusivity. And I was a camp counselor there for a number of years, number of summers. And I also took sign language courses in the evening. I guess overall I've worked, let's see, I've been an educational assistant, community support worker. I'm a former ASL, American Sign Language interpreter.
 
05:42
I've worked within the DeafBlind community, I'm on Pop Hard trains, because I was within the school system, and I actually drove a handy dart for a little while as well. And then so I basically wanted to take all of this and combine it with the travel industry.
 
06:01
And that's unbelievable. I mean, if you ever find yourself living on the lower mainland and need a job, come talk to us. You're what we need. Oh, thank you. And so, when you talk about groups, how big of groups do you actually travel with you? That would vary.
 
06:30
Well, actually, it could be any size. It just depends on the support we would have with our travelers because it depends on the traveler's support needs. Is there one caregiver that could travel with only one individual, or would one caregiver be able to have two or three travelers with them under their care? So it varies. We can go from a group of eight to a group of 20, 30.
 
07:00
you know, as long as there's availability in space and we can do it safely. My big thing is all about safety and the support. Yeah, let's go. So super fun. Yeah, absolutely. Now, you're talking about caregivers. Are these primarily families you're dealing with? Are these sort of like, you know, adults, clients who might be neurodivergent, who just have a have a caregiver and they've decided they want to do this on their own and they've got their caregiver and they've got you. So.
 
07:29
Yes, both. Yeah, families is one aspect, but yeah, my dream is to go with groups of adults wherever they desire to go and just have fun together because, to be honest, I really feel that this demographic has been underserved. Oh, absolutely agree. Yeah, yeah, and I'm here to change that.
 
07:53
Which sort of leads me to the next question. I mean, we're like, I'm pretty involved in, you know, sort of what's happening news and stuff in this in this sector in terms of, you know, what's happening with people with disabilities, whether it's physical or cognitive, you know, how have you seen this sector of the travel industry grow over the past, say, 10 years? I say it is definitely growing. We've got a lot of awareness and acceptance out there. It's becoming
 
08:22
quite prevalent. You know, whether it be Autism Acceptance Month, you know, Down Syndrome Month, Special Olympics, you know, I think the more that's out in our media, the more that people are becoming aware. And everyone has the right to travel. Absolutely. And you know, and one of the things is that in many of these podcasts, I keep sort of pressing the idea that, you know, disability...
 
08:49
is going to touch everybody at some point in your life whether you know someone or whether you You know you all of a sudden realize that You've got a disability because you're older or something isn't working the way it should and that could be physical that can be cognitive I mean, it's gonna affect all of us. We need to start looking at this in a universal fashion. Yeah everywhere 100% yeah, and you know we see lots of stories
 
09:15
uh... these days i'm really coming across our uh... social media feeds is his stories about wheel wheelchairs and airplanes that's a you know plan example of where people are not being looked after uh... yeah definitely that is so frustrating uh... you had mentioned early in one of our conversations that delta is trying to make a big change and i know air canada had stuff in the works with regards to accept ability
 
09:44
um and inclusion i don't know if it's to the same degree um but you know it just blows my mind with with technology and all the engineering that it's taken this long to figure out how to you know bring someone on an airplane in their chair yeah you know and securely tie it down exactly where's the consideration and it's not just that i mean it's
 
10:12
You know, there's a strong advocate on Twitter and she talks about how her, you know, sometimes people's wheelchairs are just basically thrown around, you know, they're just not taking the care. And people don't understand how expensive these items can be. Oh my gosh. Oh my goodness. My goodness. Like, they're tens of thousands of dollars. Yeah, they're like a car. Custom made. Yeah. And they're an extension of who you are.
 
10:38
And it's so frustrating. I've heard and read so many stories of damage. Even one of the persons sitting on the aircraft, looking out the window and seeing their wheelchair being poorly mistreated. Yeah, it's unbelievable. Yeah. So we have to raise that awareness that these are these aren't just seats. These are extensions, as you said, of that person. Yeah, you know. Absolutely. So anyway.
 
11:01
Back to traveling around and hopping around the world. How do you go about finding the best vacation for a family that's got special needs? Let's see. Well, I am certified as an autism travel professional. So I have access to multiple resources with travel directories, including destinations, theme parks, activities, restaurants even.
 
11:29
and you know shops like certain cities are making a real effort to become you know very neurodivergent friendly you know it's just kind of it's amazing actually I mean I know one city Mesa Arizona I haven't had the chance to go yet but would love to take a group there and it's like the city has done so much training and so many different factors
 
11:59
of their industry. Yeah, you know, like things like that are like amazing. So yeah, I have access to a variety of resources. And basically, it's finding out what works for that particular family or that particular individual.
 
12:18
Now, with that in mind, are there sort of areas you kind of like to avoid? I want to make sure that, you know, I understand that anywhere is good for someone to go, but like are there places that you want to sort of steer families away from because they might not be as accessible or as autism friendly, for example? Yeah, definitely. Again, that would be sitting down, figuring out exactly where they want to go.
 
12:48
me doing the research, finding out, you know, making some calls, talking to suppliers, you know, just getting a feel. I have a, you know, network of thousands of colleagues that, you know, we go back and forth and we share information and very candid information, like, don't go there. You know, so, you know, you know, like, why give suppliers the business if they're not going to treat people?
 
13:18
the way they should be treated. Oh, exactly. Now, places like Disneyland, Legoland, a number of the big sort of destination places, they always seem to be upping their inclusion game and making things a lot more autism friendly, which is great. What are you hearing from clients from these locations? Well, actually, I just had a family come back from Legoland in California, and they had a blast.
 
13:48
no issues whatsoever. So I think the fact that the training that comes it's from an outside education source, they will go into Legoland and Disney and whatnot and they will certify them as autism friendly. So it's not it's not just you know Legoland saying oh yeah you know we've done a little bit of this and that so you know they have to go through CRITA or Rigmaral to receive that training.
 
14:16
uh... and i mean that certification and that includes training on uh... you know all staff so it is just a where there and like i know um... one resort uh... beaches you know fandals and beaches beaches had four resorts now and it's the family friendly one where sandalwood just adult right uh... but the the uh... all their staff members
 
14:46
of training with autism. And it goes and it's more intense with the camp counselors, the water staff, but the server in the restaurant has also been certified. So everyone is on board with the whole autism community. Do you find there are certain countries that are doing better at that?
 
15:15
what about canada how are we doing for our sort of vacation destinations yeah again to be honest a lot of people travel away from canada truce it just as far as theme parks go you know we don't have the same uh... opportunity however uh...
 
15:38
I would like I'm in the process of putting together a trip to Banff and have reached out to a variety of suppliers there. You know, here's my situation, here's what I want to do, here's my group of travelers. So it's just a matter of finding the right partners to work with. And most people are like, wow, you know, like, this is really cool. You know, what can we do? So
 
16:06
That's great. I mean, as long as people are coming in with the right attitude, you're going to that's more leading towards success, right? Yeah. I'm wondering. Oh, sorry. No, go ahead. No, I just I I'm just curious. I should actually look into Canada's wonderland and I want. Yeah. I wonder what their accessibility is. I'm going to look into that. Yeah. We've got some homework to do. Exactly. Sorry to put you on the spot.
 
16:34
Yeah, no, that's good. That's a good word. What about cruise lines these days? Yeah, definitely this is forefront for them is accessibility. And I know Royal Caribbean, they're very autistic friendly. And they've done some training and they offer programs. And then majority of cruise lines are all about...
 
17:03
meeting the guest needs. So you know, you can get when it comes to, you know, boarding the ship, or disembarking the ship, you know, they there'll be something set up that you will have assistance so that you can forego all the lines and, you know, just meet the needs of their guests. So and then that's also where I come in and I
 
17:30
you know, touch base with the airline. And, you know, there's a note on their file that one of the travelers is on the spectrum. So it's just a little, you know, note for them when they meet the family that go, oh, okay. And they just have that little bit of extra patience or kindness, you know what I mean? Yep.
 
17:49
Yeah, exactly. Yeah. And like, and to that, we're seeing a lot of I've been seeing a lot of stories about airlines helping families with kids who have autism to do practice runs for boarding and they some airports even have like a sort of a pseudo plane place sort of set up so they can go in and take a look. And are we are we seeing that here so much in Canada? Or is that something like even the cruise industry can look into or? Well, actually, it's interesting you mentioned that.
 
18:20
That has been a dream of mine to do in Victoria for the last three, four years. It's just been this passion project. And so in April of this year, we pulled it together and I partnered with autism, autism BC air Canada. We, the three of us, um, spearheaded our inaugural, we called it YYJ autism aviation day, YYJ being Victoria.
 
18:46
So, and then the Canucks Autism Network partnered with us. Oh, great. And they are absolutely amazing. Yeah. Because they host airport tours in Vancouver quite often. And they also have, if you go online and look at the Vancouver airport, there's a great number of resources for traveling on the spectrum.
 
19:11
So I just wanted to basically, you know, emulate that here in Victoria. So we had, let's see, Autism BC Air Canada brought a plane in. The airport authority and security, basically the day started off, families showed up, went through our registration. They had to go get a boarding pass.
 
19:35
and the flight was called CAN7777, so you know, Kanakauch is the network. It was awesome. And then they had to go through security and then they had to wait, which is real life, and actually the plane was delayed, so it was a longer wait. Yeah, exactly, exactly. And then they got to board the plane and we were on the plane for about 45 minutes. We had a snack,
 
20:03
We went through the safety drills, just chatted. It actually, there were many tears through the day because it was just such an amazing event. And, you know, I'm just getting some thoughts talking about it because it was so wonderful. And we limited the number of participants because it was our first time. And we could have tripled.
 
20:29
like the waitlist. Yeah, you know, so it just shows the need out there. So this will be a definitely an annual event. And then we also had suppliers. After we all you know, got off the plane, we went and had like a little reception and we had cupcakes and snacks and all the suppliers had their table set up and they were fun things for the kids to take home. And so we had beaches, we had Air Canada vacations.
 
20:59
Royal Caribbean and also Huntington Beach in California is embarking on, I'm working closely with them and we're embarking on setting up travel, you know, vacations to Huntington Beach because it's nice and close and there's so much to do and they even have an adapted surf school.
 
21:23
in Huntington Beach. So, you know, it's just reaching out and finding the right connection to the right suppliers and then you want to stick with them and build up your program and just keep going back. And then my dream is say we go to Huntington Beach and we go, you know, once or twice a year, we'll let, you know, connect with day programs down there and meet some friends. And then every time we go back, we visit with our friends and we go and play volleyball on the beach or, you know, just...
 
21:50
Things like that. It just builds a much, much bigger network. Exactly. You know, and it's all based on fun. Now, I hate to ask this kind of question because you do travel with the groups. Is there an added cost for that? Like, how does that work for your own business model? For me, no. I would be, you know, with the groups, I would be covered. What the additional cost would be is bringing the support person.
 
22:20
Yeah, so the I mean, the but I mind you, when you do book a group, you do get a group rate. Right. So it's better than, you know, someone just booking by themselves. So yeah, there would have to be funds available for the caregiver or support person to come along. Is there I mean, if it's if it's just a couple of people and their caregivers, is there still some sort of a cut rate, given the situation or airlines and cruisers like,
 
22:50
Yeah, well, airlines, mind you, support people can travel for a discounted rate. Okay. You know, yeah, depending on, yeah, depending on the level of cognitive awareness. Yeah, yeah. So, no, and then the thing is, again, that's where I try, I reach out and just say, so here's our situation, what can you do for us? You know, like whether it be the resort or the hotel.
 
23:18
You know, or when we're there, can you throw in some, you know, fun activities or an excursion for us? You know, yeah, so I like I'm a huge advocate, as you can tell for, you know, the diversability and neurodiversity. Huge advocate from day one, you know, even my kids when they were little, I mean, they're in their 20s now, but I seeked out a preschool in Coquitlam. We were living
 
23:47
this preschool was known to be inclusive and I would guess maybe half the kids had some sort of disability. So my kids just, it's their norm. They just like, oh, look at that, you know, so and so, you know, can't see, or so and so, you know, is in a wheelchair and, you know, we're friends with some of the families to this day. So it's just, I think, and that's just making it a society norm.
 
24:17
you know, and that hopefully has a ripple effect with my kids. They share that, you know, their experience with others and, you know, call people out if they see something that isn't appropriate. And yeah, you still might be a little bit of the outlier. So when you're in, in your in, not to sound negative, but I mean, in your mind, how is inclusion getting better? How much further do we need to go? I think it's definitely getting better. I think
 
24:46
But boy, we sure have a long way to go. I think it's getting better with what we were talking about earlier with the media covering more events. You look at the Special Olympics just now, the World Games, and I'm just so impressed with the coverage that our athletes received. But back in the day, that wouldn't have happened. Yeah, exactly.
 
25:16
saw on our Facebook feed that we won something like 120 medals at the Special Olympics in Berlin. That was unbelievable. That's incredible. Unbelievable. Yeah. That's such great work. Yeah, so I know and I think that every little bit that's in the media in a positive light makes people go, oh wow, that's really cool, you know.
 
25:41
And they're treated like athletes as they are. Yeah, professional athletes. Exactly. You know? Yeah. So, yeah. Well, Angela, what's... I think that's super cool. Absolutely. What's the best way for people to find you? I guess my website would be good because then from there we have links to my Instagram and Facebook. My Instagram was hacked.
 
26:06
last year. So I am on Instagram. It's not travel with and is travel. There's an F on your website. No on my Instagram, but the website would be www dot travel with and dot ca. Now I just I didn't ask you this earlier, like you really do focus on the the disability and neurodiverse community.
 
26:34
Can anybody just call you for travel? Oh, thanks. Yeah. I'm definitely a full service, full service, um, travel agency. Um, you know, we were talking about Scotland earlier. I have a trip planned, you know, next, uh, August for Scotland and Ireland. And it includes the, you know, royal.
 
26:54
edinburgh military tech you know i've seen all that's all been amazing it incredible gold yeah the funniest thing just a completely nothing to do with this conversation is on the on the royal mile in edinburgh right in the sort of the heart of the entire there's a store called bag pipes galore and okay i think that was funny that made me laugh bagpipes galore
 
27:24
It's crazy. I could go on and on about that. Oh yeah. Yeah. We'll have to talk offline about that. Also, um, you know, someone can, what's that me? You know, my cell numbers on there. I'd love to do virtual chat. And when, when I'm meeting families or adults, I find, you know,
 
27:46
Bring the kids on the meeting because I want to get their perspective of what their dream is for their holiday. You know, so I've done that with families. And so my phone number is 250-885-5417. Yeah, shoot me a text, call me, let's connect with WhatsApp and yeah, just start, you know, talking travel and what are your dreams and let's put it together. Yeah, absolutely. Yeah, yeah.
 
28:15
Anything else to add? I think we covered a lot of stuff there. Let's see. Oh, my mission statement, your mission statement, which is on my business card and my website is short and sweet. Everyone is welcome and included in my world of travel. Perfect. That is my my passion, my my dream. So
 
28:42
Yeah, give me a show and oh, oh, oh, I did start within the last couple of months. I did start a new travel club. Oh, it's called Angus Kindred travel crew. And there's information on the website and it's just, again, putting groups together and let's go and. You know.
 
29:06
Oh goodness, I just get so excited and passionate about this. Good. We need more people like you. Yeah. I just, um, I think let's, you know, if we can travel together as our, as our crew, you know, we can get t-shirts, we can get, you know, lanyards, you know, just go and have fun and embrace travel, embrace each other and just go for it.
 
29:34
Absolutely. I'm here to advocate and make your you know, your travel as smooth as possible and we're to help We're here to help get the word out Yes. Oh, yes. Thank you so much And I really really appreciate this Evan that you take the time to reach out and invite me no problem And we can certainly do this again if you know the more issues or more possibilities pop up for sure
 
29:59
Okay, okay. Well, I'm very grateful and thank you and to all the listeners. Thank you. And I look forward to chatting with you and meeting you soon. All right, so you have been listening to DDA's Encouraging Abilities podcast. Our guest today has been Angela Fominoff, owner operator of Travel with Ange, local travel agency in Victoria that focuses on helping neurodivergent community get out and see the world. Angela, again, thank you so much for joining us today.
 
30:28
Thank you. You take care. Thanks for tuning in again to our little podcast. I'm your host, Evan Kelly. We'll see you next time.