Encouraging Abilities Podcast

A podcast devoted to the developmental disability community is brought to you by the Developmental Disabilities Association (DDA). DDA has been an advocate and supporter of this vulnerable part of society since 1952. We operate over 50 group homes, child development centres, and drop-in programs in Vancouver and Richmond, British Columbia. Today, we support over 1,800 people with developmental disabilities and their families each year.

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Accessibility on Vancouver Island

Wednesday Jun 05, 2024

Wednesday Jun 05, 2024

He moved to Canada about 20 years ago from the UK and never left. We chat with accessibility consultant Ramesh Lad who aims to make Vancouver Island accessible to all.
00:08Welcome again to DDA's Encouraging Abilities podcast, where we chat about everything disability related. I'm your host, DDA Communications Manager, Evan Kelly. Now we talk a lot about accessibility on this podcast, how things can be done better to level the playing field for people with disabilities, whether physical or cognitive. Now that could mean adopting a universal design concept so that everything we build or create is done with everyone in mind.
00:33Sometimes that's easier said than done. So we need consultants who navigate design beyond meeting building codes, because building codes doesn't necessarily mean it's accessible. It just means it might be relatively safe. So joining me today is accessibility consultant, Ramesh Lad, who hails from Vancouver Island. I came across Ramesh on an ex or Twitter story, if you're still there. So the power of social media is good.
00:57And I was a person with lived experience. Ramesh started step-by-step accessibility consulting in 2018 and has been building his business ever since. So thanks for joining me today, Ramesh. Thanks for giving me the chance to chat. Thank you. No problem. I always like to start things like this. So tell me a little bit about yourself. So where do I start? So I'm basically originally from England. I moved to Canada in 2001.
01:26And I came with the idea of just to live and work out here for about a year, just to get some different experience and to have a different sort of lifestyle. But 22, 23 years later, I'm still here and enjoying Canada, basically. My background is I in England, I worked with youth in schools. Before that, I worked in human resources.
01:54And then when I came to Canada, my first job I had was with BC Paraplegics Association as one of their counsellors. And then from there, I've done various other jobs. Most recent jobs I've had is working with youth at risk here in the Covox Valley. I've also worked on the downtown east side in Vancouver when we lived in Vancouver. So my career history is quite varied.
02:21My personal background is I was affected by the drug thalidomide, which is a drug given to expectant women to alleviate things like morning sickness. But unfortunately, the drug had an impact on the fetus, which left people with various types of disabilities, including limbs missing or short limbs.
02:51And not everyone, sadly, had survived. So in the UK at the moment, there's about 400 people that were affected by thalidomide that are still alive. In Canada, I think it's just under 100 now that are still living and, yeah, living. Now, if you don't mind me asking, Ramesh, how old are you? I'm 62. Okay. You look younger in your photographs.
03:20Thank you. That's good. It's amazing what Photoshop can do. And so, I mean, you know, just checking your profiles and things in your business website, what really got you interested in working with at-risk youth? I think it's just one of those areas I fell into. Like I said, my background was working with youth in England, but mainly in schools and colleges.
03:51So when we moved to the Valley, a position came up, when we moved to the Colmocks Valley, a position came up which was involving working with youth at risk. And I'd already worked with adults at risk, as I was saying earlier, on the downtown Eastside. So this is just sort of following on from that, but specifically working with youth at risk, which is an area that had an interest in, especially as I've worked with youth in the past.
04:18So that was it really, it was just more of a chance that came up here in the Cobox Valley where there was a program run called Blade Runners which is working with youth at risk to try and give them basic skills to allow them to find entry level jobs. So I was working with youth to sort of train them up to get into entry level jobs and then not just train them but also...
04:45working with local employers and local companies to try and get them placed as well. So, but my interest came from my background. Oh, interesting. Now, so Vancouver Island is, you know, of course, a little bit detached from the rest of BC. Do you, how's business? How do you, do you feel like you're making an impact on businesses and design over there? I think I am. It feels like it at the moment. I'm quite busy with mainly educational establishments.
05:14that I'm working with and I've done some work for a couple of senior homes and I've just started working with somebody who wants to improve their home for aging in place. So I think it's taking off. Businesses are a little harder to work with because I think there's the financial barrier that they feel might come up with what they need to do to make their businesses accessible.
05:41I think the other thing is here in the Covox Valley, I don't know if you've been here in recent years, but in Courtney, a lot of the businesses downtown, the buildings are a little older, so they're a bit more difficult to make fully accessible. But I think businesses do try really hard to accommodate everyone. Trevor Burrus Now talk about, tell me a little bit about the cost.
06:10making things accessible is that the cost really is somewhat negligible. And if you're thinking about a business where if you're a retailer, for example, or a restaurant, whatever, that if you're not making something accessible, you're turning away a big dollar. Absolutely. No, that's totally true. You are. Yeah, it's basically you're throwing money out the door because...
06:38people aren't able to get in. And I think what we have to remember here is that people always think of disability or people with disabilities as being this very small percentage of the population. So they're looking at the big picture of, well, all these customers are coming in. I might only get one person in a wheelchair or one person with a learning disability or a hearing impairment. But in reality, what they're forgetting is that we've got an aging population here.
07:06You know, worldwide we've got an aging population. Now that aging population comes along with various challenges of their own. You know, for example, mobility might be an issue, or hearing might be an issue, or sight might be an issue. So if you're making those accommodations, that population of people that might not ordinarily use your services are more likely to use them. You know, whether it's retail, whether it's entertainment, whether it's...
07:35leisure and so on. So I think the cost, and again coming to the cost of it, it depends what needs to be done. If it's a new building, then the cost is, as you were saying earlier on, absolutely minimal because you can put those, you can implement those design features that will allow greater accessibility into place as the building is being constructed, which saves a lot of money.
08:05And those things that they're putting in aren't huge. Why the doors? As an example, or recently I worked for an organization that works for affordable housing, and they were building units, and to make the units accessible, one of the things we looked at was putting support beams in the bedrooms. So in the future, if one of their residents needs a hoist or something, that could...
08:34The hoist could be attached to that support beam and it is safe and everything else. But if you try and do something like that after the building is built, you're talking about quite a few thousand dollars to make that happen. Whereas when the building was being built, it was minimal, a few hundred, and that's just for the material. The labor costs don't even come into it because they're building this unit anyway. So it all depends on what level of...
09:03you're talking about. New buildings, I would say you're actually right, minimal. Older buildings, it might be a bit more, but again, I would say the costs are huge. I think there's a lot of assumptions about what needs to be done. So having somebody like myself or one of the other professionals from the Rick Hansen Foundation look at things would give them a clear idea of the cost maybe not being as high as they're thinking it's going to be.
09:34So with that in mind when you enter a building or someone I guess someone's house or something like that when it when it turns When it comes to making a sort of a report, what are the main things you're kind of looking for? Well, I start right from outside So whether it's a building or a house, you know, you're looking at it from the exterior pathway to the front door or to the entrance of a building and then
10:03You know, you're basically walking the building, walking through the building in your mind and looking at every aspect of it. So for example, on a driveway or a pathway, you wanna make sure that it's level, it's easy to identify the path, it's safe. The lighting is good for nighttime. When you get to the front door, is it a level entry, are there steps? How easy is it to reach an intercom if you're...
10:33going into an apartment building. So it's every little detail that you can think of that you're looking at. You're not just looking at, okay, what if I'm inside, can I get from the living room to the bedroom, or can I get from one office to another? It's not that, it's you're looking at every aspect of that building, and not just the interior, but the exterior as well. And so you mentioned you've got aging clients, so you're dealing with private individuals as well?
11:01Yeah, yeah. I've just started basically that that's that's come about through the article that you saw that you contacted me through. So yes, I'm hoping that that's something that I can work more on that would allow people to stay in their homes and to maintain a level of independence that they want. Well, yeah, and like you mentioned, you know, Aging Society, I mean, latest stats from 2022 say about
11:3027% of Canadians identify with some sort of a disability. So Seems like there's a gold mine there for this kind of thing Yeah, exactly. And it's not just a gold mine. I mean, you know, yeah, absolutely There is a financial benefit for people like myself who are doing this work But at the end of the day, you know from a community and a society point of view There's so many pluses as well, you know as an example this person I'm working with at the moment
11:58She's going to be able to stay in the community where she's lived for the last 20 years or so. She's going to be still around people that she knows. She's close to friends and family. So there's a huge benefit there. And then if she decides to move, that home will be ready for somebody else to move in and to continue with aging in place with maybe some minor alterations to meet their individual needs.
12:24So I think the benefits outweigh any cost. Yeah, absolutely. And even in my own experience, I don't have a lived experience with a disability myself. My mom did get sick a few years ago and passed away shortly after that, but that's a whole other story. But once we realized that when she got sick and was ill, she was going to have some renovation work done in her house.
12:51But we just turned to the renovator and said, like, hey, we got to cancel this stuff. Because it was, in fact, terminal illness. But she could only access a wheelchair at this point. So instead of getting him to put in new coverage, we're like, OK, we need you to build a ramp from here, here, here. And she had a slightly difficult layout of her house. But he did it. He built this great ramp that would take her around the side and out to the front of the house if need be. And it's, you know, it's. Right.
13:21If we would just look at the construction of the house beforehand, not assuming that everybody's going to need a wheelchair, but I mean, a ramp to me can still be better than steps anyway. Absolutely. I mean, there's benefits to everyone. Something like a ramp, whether you've got children or you have a stroller for your kids or even just bringing your groceries in.
13:49a lot easier coming up around than trying to carry them up a step up steps. Absolutely. Now you received your certification from the Rick Hansen Foundation. Now this, their program there, it's getting a lot of worldwide attention. Can you take me through that process? Yeah. Well, I was one of the first ones to do the program. So it might've changed quite a bit since I took the course, which was back in 2018. So.
14:18really difficult for me to sort of go into too much detail because I might be giving you the wrong information, especially as I did it so long ago. So I think that's something that basically I might need to look into a bit more. I know somebody who's doing the course at the moment and they're doing it online and I think there are courses that are done in Vancouver which you can attend as well. But basically the course is there to...
14:46The course contains standards for making buildings and other facilities accessible to people with a wide range of physical, sensory, or cognitive disabilities or a combination of all of those. So that's basically the basic aspect of the program. It's designing things that accommodate people of all abilities.
15:15And to be inclusive as well, that's the other aspect of it, which is very important. So the designs are made to be inclusive. So for example, having an entrance into a building which has steps. So instead of having access, which used to be the case years and years ago, and I think it still is now, where sometimes you'd have to go through the back entrance if you're in a wheelchair or have mobility issues. Whereas the idea of universal design would be to make that.
15:44so that everyone uses the same entrance to get into that building. So having a ramp and stairs designed in a way that is aesthetically pleasing, but it's also very practical. Now, is universal design something that people or builders and designers and architects could easily wrap their head around? Or is this, are you coming up against some pushback on that? No, not really. I mean, from my understanding of it, the course that the Rick Hansen Foundation are running,
16:13They're actually trying to encourage people like I'd X and engineers and people from the construction field To actually take the course so that way, you know They have an understanding of what's required and how to make implement those things From this from the drawing stage onwards one of the architects I worked with on a project recently He's actually taken that course now he's actually done the program so you know just by
16:42sort of me chatting with him and I was going through the process of this building that we were both working on. He's done the course now. So hopefully in future designs of buildings or homes, he'll be implementing some of those standards. So to the best of your knowledge, I mean, you've got experience in both.
17:09both here and in the UK. How is Canada doing when it comes to adopting some of these concepts compared to the rest of the world? I understand that England has a lot of old buildings, so that might be a challenge. Yeah. I think Canada is doing quite well. I think there are still areas where there's need for improvement, especially when it comes to the leisure industry. Hotels and things are very –
17:38My experience is that they're very, very reluctant to sort of follow through on things. I travel quite a bit, so staying in hotels and things. I've often said to them, your room looks great, you've got a great, accessible room, but there are things there that could make it better and could make it easier for people with various different abilities. I give them my card and they give me a card.
18:07You know, say, I'm quite happy to work with you guys or if you want more information, let me know. And you very rarely hear from people after that. So I don't know if it gets passed on to a manager or whether it gets beyond the front desk. So, so, you know, I think there's a reluctance there. But again, as I was saying earlier on, they're missing out on a huge population. We're going to need those things, not necessarily just.
18:33you know, one out of every 10 customers that might use a wheelchair or a walker, they're missing out on a lot of potential clients there or customers. Well, yeah, exactly. And it's the, you know, the city of Richmond and Vancouver, they're always there, you know, and good for them. They're coming up with these affordable housing concepts and, and, and new builds and stuff. And then there was one recently here in Richmond, where it's like, okay, we've got,
19:0180, they've built 80 units of affordable housing for seniors and lower income. And they've got four of them set aside to be more accessible. And all I could think of is, well, why just four? Like what? Just make the whole thing accessible. Exactly. And it doesn't have to be that different. You can still have people using it that don't need those additional features. But you know.
19:31If somebody else comes along that does need it, it's there, ready for them. Instead of saying turning somebody away because you've only got four units that are accessible and you've got six people applying, it doesn't make sense. And especially on new builds, it just doesn't seem to make sense that you could put all those features in. I mean, a good example is, again, I keep coming back to one of my recent projects, which was working for Affordable Housing, Co-Ontario Affordable Housing Society.
20:01And what they've done in this new building is that they've got five or six units that are fully accessible, but then some of the other units have got in there. The way they've done it with the bathrooms is if it needs to be made into a more accessible bathroom, it's just a question of taking the bathtub out, which is one whole unit, the tub and the wall, and just putting the shower feature in there.
20:28So that's such an easy thing to do, and it would cost very little for them to do that. But they've done it. So as the need gets higher, as the demand gets higher, sorry, they can make those changes to that building, that existing building, with minimum effort and minimum cost. Yeah, I guess, and you know, in the cost, the whole issue of the cost, which of course some people raise, is, I mean, costs certainly can be prohibitive, I'm sure. But I mean...
20:55Oh yeah, absolutely. We're not talking about prohibitive costs, we're just talking about, okay, whoever owns the building might have to put two or three hundred dollars into it this month and then you're fine. Yeah, yeah, yeah, exactly, exactly. Yeah, it's looking at it in the long term rather than just the short term. Yeah, well exactly. That's really, really hard for people to sort of get their head around that I think sometimes.
21:24Yeah, exactly. So, and it's, you know, recently I was at a place in Vancouver and it just, because a friend of mine is actually in a wheelchair and he's a photographer and he came out to shoot something for me a little while ago and we realized that there was, and I mean, when we're talking about old buildings, buildings in Vancouver aren't really that old, they're not like England.
21:48But, uh, they're not, they're not necessarily as permanent either, but this place had a very accessible entrance, no problem. But the back, the back way out, let's just say there was an emergency or a fire or something at the front, it's stairs. Like there was, there was no way for them to get out. Yeah. Since, since I started working at DDA a few years ago, that's opened my eyes a lot is I kind of look at these things and go, Hey, this isn't.
22:16This doesn't seem right. This doesn't seem fair. This doesn't seem level. So, yeah, no. Well, and I think, I think that that's where the issue is. That's where the problem is. You've got somebody who says, okay, well, we put ramps in here. So that's great, you know, but they're not looking at the whole picture that that person still needs to be able to get out in an emergency or use the washroom or, you know, be able to access other parts of the building like everyone else. It's not a question of just saying, okay, we put a ramp into, we can.
22:46get people in through the door. You know, I stayed in places where I, you know, where they're called and said, do you have an accessible room? Yes, we do. And you turn up and it's not accessible at all. I mean, there's one place I stayed at where we couldn't even get in through the front door into our room. So I said, well, how do you expect this to be accessible? And she goes, well, we've got a grab bar in the bathroom.
23:16and uh... and and i think that you know uh... and i think that's where you know is think about like the uh... recalculation certification and the professional that work with it uh... a very good at doing that and like i said before i think i look at everything from
23:44entering the building or before I even enter the building. And that's the only way you're going to do it. You know, and not everyone, you know, in defense of most people, they haven't had the experience of having a disability. So they just look at it, well, I put a ramp here, so that's fine. Or, you know, and to them, that's good enough. But not realizing that.
24:13that people need access to everything else once they're in that building. Mm-hmm. Yeah. Yeah, exactly. Now, in terms of your business, we'll go back and sort of more of a cost related thing. Like, obviously, you give people a report. Does that include an estimate of what it would cost? And do you get businesses just sort of looking at that and going, nah, no way? Or are businesses really coming to you because they do want to make these changes?
24:41The people that are coming to me, they want to make those changes and so that's quite easy but I don't give them a cost on it. What I do is I basically start by saying, well, these are the things that are good. You've got a building that has got X, Y, and Z positive aspects to it and these are the things that you need to improve on. Now it's up to them. At that point, they can turn around and say, well, yeah, we can't do everything in one go.
25:09One of the reasons why I call my business step-by-step because the idea is that you don't have to do everything in one go, you start somewhere and it's a step-by-step process to get to that end goal of making a building fully accessible. So, you know, I'll say to them, okay, these are the things that you need to do to make this building more accessible. And then if they wanna go further with it, I can say to them, okay, we can prioritize the things that you need to look at first.
25:39and the things that can maybe wait for a year or two years. And that way, it instantly sort of makes them realize that this is gonna cost me a year's profit to make these changes. I can do a bit now, a bit next year. We're doing some renovations, so maybe I can add some accessibility features in at that point, and so on. So yeah, so, and then obviously, if they wanna take that next step, then the cost aspect comes into it after that.
26:08It's pointless me spending all that time and effort to put in cost evaluations on everything when they really don't want to do all that. And I think it's off-putting. And I think it's off-putting as well. Now, are there builders, are there contractors who specialize in this kind of sector? Not really. Not that I know of. I mean, like I said, I don't know of anyone here in the Coalas Valley that specializes in that. But I think...
26:37Working with builders like the guys that built our house that we live in now, because we were looking at accessibility features constantly in the house to make it as easy for me as possible. They got a lot out of it. Simple things like they were researching, well, we want level entry, so how are we going to do that without causing problems with flooding if it rains heavily? How can we make this?
27:07So it is level entry and make them realize why that was important for me. Um, hopefully that that's something they've gone away with and next time they come across somebody who's a senior or somebody that has mobility issues, they're going to be looking at those things and thinking, okay, well, you know, maybe you need to have this at level entry to, or maybe you need to have these things in place to make it better, wider doors, so on. So I think, I think, I think by having personal experience, why the builders.
27:36we worked with, they're going to take that knowledge away and hopefully use it again. Yeah, that would be great. Now in terms of cost and your own personal cost, the one thing that I find that people who don't have a lived experience with disabilities, they don't understand the cost of actually living with a disability. In terms of navigating this world, do you run into these issues where it's...
28:04It's not just a cost to a business, but it's a cost to you.
28:09Yeah, I mean, I think that does happen quite regularly. I mean, a few years ago, quite a few years ago, I wanted to get into voiceover work. And, you know, I did an audition tape, sent it out. But there are quite a few places that I couldn't go into because of accessibility. So I lost out on that one. You know, maybe being offered auditions. I wouldn't offer lots of auditions, but.
28:38I was offered one or two, but then when I researched about the building, I couldn't get in, so I'd say no. So yeah, they were the cost to me as well. Yeah, absolutely. Trevor Burrus So lost revenue. And speaking of revenue, I mean, obviously you've probably heard of the new Canada Disability Benefit giving people an extra 200 bucks a month. What do you think about that?
29:07But I don't think it goes far enough. I mean, that, what's that gonna cover? A couple of cab rides? You know, it's not a lot. I mean, 200 bucks isn't much for somebody, you know. I mean, I'm in the fortunate position, I'm working and everything else. But if you're not working, and you're on low income or benefits, 200 is nothing. Yeah, and you know, back to other costs. Now, are you, do you use a wheelchair?
29:36I do. And is it motorized? Is it mechanized kind of thing? I've got two. When I'm out and about, I have a manual wheelchair and around the house and within our local community, I use the powered wheelchair. So I've got two wheelchairs. Like those alone can be ridiculously expensive. Oh man, a powered wheelchair, it's like buying a used car. The cost of a used car. Sometimes more than the cost of a used car. I mean, the one I'm...
30:05The one I'm using now, I mean, there's nothing fancy about it. And that was around 25 grand, 25,000. That's unbelievable. And there's nothing to it. I mean, it's a wheelchair. It raises up and down. The back goes, you know, the back rest alters. And that's it. There's nothing else that really, you know, there's no bells and whistles on it. Yeah.
30:32So we're getting kind of down to the end here. What else can an organization like DDA be doing to help foster accessibility? Well, I think you guys are doing quite a bit already, aren't you? I was reading just earlier on today, before you came on, about the fact that you've been working with the city of Vancouver for an accessibility strategy.
30:58Oh, you've been instrumental in that with other organizations, I'm assuming. Yeah, there's a theory. Yeah. So I think you guys are on the right tracks with things like that. And especially in the city where, um, you know, you need to get to work with, with, with main organizations, I mean, in a small community, one to one might work, but in the city it's, it's, it's a lot harder. I know. So I think you're, you're, um,
31:28accessibility strategy that you guys are working on is brilliant, really good idea. How's that going? How far have you got with that? In terms of the city strategy? That's not really part of my department. I mean, I chat with a woman who runs that part for DDA and I think she's quite pleased with what the city's doing and the moves they're making and some of the sort of legislation coming forward. So let's, I mean.
31:56Excellent. Sounds positive to me, so, and that's good. That sounds great, yes, absolutely. So how? Yeah, so I think you're on the right tracks with sort of focusing on, you know, the larger picture, especially in the big cities like Vancouver. Mm-hmm, good, good. I'm glad to hear that Canada and BC is doing well, you know, from your perspective, so. There's always improvement, but you can say that about anything, and very much so about accessibility.
32:26it's always going to be room to make changes for sure. Yeah, absolutely. Absolutely. Um, and so how can people get in touch with you? Um, they can get in touch with me, uh, through my website, which is, um, step-by-step consulting.ca. Um, they can email me at ramish at step-by-step consulting.ca or my phone number, which I can give you as well. Is that okay?
32:55Perfect, yeah, if you like to, yeah, sure. Yeah, phone number is 778-992-0556. So those are the three main ways that they can get hold of me. All right, sounds good. Well, you have been listening to DDA's Encouraging Abilities podcast. Our guest today has been accessibility consultant Ramesh Ladd, who has his business step-by-step consulting. He brings his own lived experience to the profession of bringing universal design and consultancy everywhere and to everything we do in society. So thanks for joining me, Ramesh.
33:24Thank you, thanks again for the opportunity. And I'm your host, GDA Communications Manager, Evan Kelly. Thanks for listening, we'll see you next time.

Friday May 17, 2024

Laen Herschler knows his live theatre. The UBC PhD student has taken the reins of Vancouver's inclusive Theatre Terrific and encourages anyone of any ability to get involved.
Theatre Terrific – Expanding the Horizons for Anyone With the Acting Bug
Okay, we are back for another edition of DDA's encouraging abilities podcast. I am your host DDA communications manager, Evan Kelly. Today we are talking theatre. Joining me today is Lon Hershler, the brand new artistic director of Vancouver based Theatre Terrific. Theatre Terrific production and classes are for artists of all abilities to develop performance skills and collaborate in the production of theatrical works. All of Theatre Terrific's classes, workshops, community and professional productions are
are made up of people of all colours, abilities, genders, and backgrounds. It started in 1985. Theatre Terrific is now Western Canada's longest running inclusive theatre program. It has won numerous awards over the years. And now with Lon at the helm, the future is even brighter. So thanks for joining me today, Lon. It's great to be here. Thanks so much. Now that the gear is working, we can do this. So tell me, tell me a little bit about yourself.
So yeah, I'm really happy to be jumping in here with Theatre Terrific. I've been actually involved with Theatre Terrific as an artist for about six or seven years, working with Susanna, the previous director. I'm an artist, I'm a theatre artist of many different areas of theatre. I do direction, I suppose, artistic direction now.
But my background's really all over the board with theatre as an artist in many different directions and ways. And yeah, quite a while with... So you'd say that theatre acting, that's your lifeblood, that's who you are.
So I would say that I began as an actor and that's where I entered in. I entered in through the joy of acting in theatre and I continue to act, but I've been a teacher and a facilitator of theatre, I'd say predominantly for the last 10 years. And so really working with others to create theatre, devise theatre often, helping others to...
create works of theatre, also doing improv theatre. I do a lot of playback theatre, which is improvise, storytelling and community. So yeah, I have a love for the acting, but I would say I've been facilitating and supporting others in their acting for the last 10 years. Now, are you still an instructor at UBC?
Yeah, so I'm in the midst of doing a PhD. So I started off after my master's degree in South Africa. I did a master's degree in theatre making in South Africa and lived there for about four years and then returned and taught at UBC Okanagan in the theatre department, in the creative studies.
and it was a very alternative theatre department, really helping theatre artists create their own work. And I worked in that for on and off for about five or six years. And then I decided to go further in my studies, in my academic studies, when I moved to Vancouver and I'm doing a PhD and also teaching on the side at UBC as well.
Yeah. So what's your PhD gonna be in?
So interestingly, the work I do at UBC is in something called research-based theatre. And so what I've been doing is supporting academics of all disciplines who want to use theatre as a medium to reach perhaps community, to reach larger audiences, to make their work sometimes make the ivory tower, so to speak, more accessible to...
people that wouldn't necessarily open up an academic journal and read an article, but are definitely implicated and interested in the work that's being done, but would never necessarily have access to it for various reasons. And so theatre becomes this medium, this space for people to interact with new ideas, with research that has gone into community. And in fact, overlapping with a theatre terrific's work.
One of the major projects I've worked on for the last three years has been around a project with People in the healthcare professions across the board so social work medicine Really nursing anything that that intersects with healthcare and People who work in those professions, but also live with a disability and their experiences So there was a very large research project
into the experiences of individuals with hidden disabilities or disabilities that were not hidden and their experiences, the stigmas they might have faced in those jobs. And so then we created a piece of theatre that has been since touring online and in person for three years and it's been very, very successful. And that's not part of Theatre Terrific, that's something else? No, that was not part of Theatre Terrific.
Other than, I suppose, because of my involvement, I create a link between those two worlds, but it wasn't under the umbrella of Theatre Terrific, yeah. Now that, what's that piece called? That piece is called Alone in the Ring. Alone in the Ring. Yeah. And that's sort of touring now, can people go see that? No, I mean.
When I say touring, it wouldn't be, it's not touring in the sense of professional theatre touring to theatres. It would be that we would do a lot of conferences. We'll do medical conferences. We will do all sorts of different, we will do, in fact, like this summer, the incoming students for the physiotherapy and occupational therapy departments at UBC.
all of their incoming classes, first and I think second years, will do the performance for. And it'll become a performance that then becomes a talking point and a place of discussion and engagement with these issues with the students. So these will all be students that, you know, hopefully in a couple of years will be coming out and working in the workforce. And now they're going to have this higher degree of interest and familiarity and consciousness and awareness.
around these experiences of people with disability. And for themselves, if they are students, because there are quite a few who live with disability themselves, amongst the students, this becomes a space and hopefully a safe space for them to start talking with others about their own experiences and creating openness and awareness around that, yeah. Yeah, gotcha, gotcha. So it's really just more of a big education piece, educating people on sort of intersections of...
abilities basically and broadening their own horizons as students as they enter the workforce. That sounds like sort of a new way of teaching in a way. I could see that expanding into a whole bunch of other sectors maybe. Yeah, I mean it's definitely something that's growing. The idea of theatre, we're at UBC not maybe the first to do this. It's happening but
there's been a growth in this and people are starting to open to it and see. There was a lot of pushback at first, you know, in universities, they, they, they go, is that, you know, how can you bring the arts into, is that going to, you know, they, they are also ethical concerns. They think, Oh, is this, you know, are you, is it going to really represent the, the stories accurately of these, you know, research participants? Are their stories going to be really well represented?
And so we have to go through a lot of work of thinking through ethically, of discussion, of going back to the research participants and saying, does this represent you? Does this represent your story? And if there are participants who wanna perform or be a part of it, that's always the ideal in this particular show. None of the participants were performing, but they were involved often in giving feedback. And yeah, so it's something that's growing.
and hopefully there'll be more of this that's gonna happen in different sectors for sure. Yeah, that sounds really interesting and a good way to learn. Why did you get involved with Theatre Terrific?
Wow, because first of all, I met Susanna and Susanna who as maybe some of your listeners may know or those who don't know was the founding artistic director of Theatre Terrific for 20 years, more than 20 years. And she is a wonderful human being and brings so much joy and passion to the work she does. And when I first met her, her energy was so warm and inviting.
And when she told me about what she was doing, I said, you know, and I was already very involved in what you would call applied theatre, which is working a lot in community with theatre, seeing, like I said, that one example of the university, but I'd been working in lots of different ways where we see the power of theatre in so many that it doesn't just have to be on Broadway, that theatre, but theatre has this power to...
capture the minds and imaginations and spread joy and ideas in so many different directions and involve people in different things. And so when I met Susanna and I heard about the company, she was just, and I said, how can I be involved? And at first I just came in as an artist and I just volunteered my time and I just participated and I learned from Susanna how the company works. And I just.
became involved as an artist and I learned so much from everybody that was involved. Theatre Terrific is an incredible space. It's, you know, it's a really, as an artist I learned a lot and as a human being I learned a lot. And so I think there's not always, as an artist sometimes it feels like you're either sacrificing one or the other.
You either are going into the really mainstream theatre and sometimes you feel like you have to sacrifice a part of your humanness to try and make it and struggle in the industry. And on the other hand, sometimes you can feel like on the other hand, you have to sacrifice your art in order to be a part of community building. And then suddenly I found this wonderful nexus, this space that was for me nourishing both of those things.
And that's what drew me to Theatre Terrific and keeps me here. More than just here, there's a new artistic director. Now, how many people are involved in this theatre group? And how many people are differently abled, in a sense? And obviously you don't have any interest in turning anybody away, so you're gonna typically develop people, you're gonna have people with physical disabilities or people with cognitive disabilities. Is it just...
Describe the group to me.
Yeah, I mean, so it's a community. It's a community in the sense that we're not like a theatre company that has a fixed group of individuals that always perform in our plays or always, it's a community that people, some people may come on just for the classes. We offer all sorts of amazing and diverse classes from drum making to theatre creation to dance to, you name it, choral singing.
we offer these different classes and somebody might come in for a class. Other people might wanna stay and be a part of, they might audition for one of our productions and be a part of that. And so there are people that would come for one class and people that come for all of our classes and are in the shows. And so the community is quite expansive and then you have to stay over the years. So some people might come for two years in a row and then...
They take a hiatus and come back three years later, but they're always part of the community. And often they're coming to see the shows and that's all a community of people that... And so I would say that expansive community, that family of theatre terrific is hundreds of people. And then on any given year in the classes, you might have, let's say, 50, 60 people that will be involved in our classes, 70 people that will be involved in our classes over...
a particular season, a particular year. And those people may have been many years in the company, others are coming for the first time. And in terms of the percentage or the diversity, it really, we are, I say, radically inclusive in the sense that we're not asking people to disclose, and therefore we're gonna accept you because you disclose a certain type of disability.
but we make it well known in the community that we do not turn anybody away. And in fact, we encourage everybody to come in and by creating that inclusive space, not by necessarily saying you have to, these are the requirements, but by saying we are gonna make this space as inclusive and possible for everybody that wants to come. I think we get a name for ourselves out there and people very, very diverse. I think people that would never have a chance.
to be in another theatre company or coming into our theatre company and into our space because of that accessibility, because of that openness and that inclusion. And so I would say in my, it's hard to give you a percentage and some people have hidden disabilities and other people don't. But I would say, for instance, in our theatre creation class right now that I'm running with my dear friend, Angelo, we would...
have around 15 to 17 participants. And I would say, you know, 90 to 95% of that would identify as having a disability. Now, you know, very, very, very diverse in terms of that, so yeah. So like in terms of your performances, what's the goal of theatre director? I mean, maybe you've got different goals now that you're taking the artistic director seat.
How many productions would you like to do a year? Where can people see them, that kind of thing?
So we often at the end of each class, so for the theatre terrific, I'll give that example, because we're doing it at the end of each class, we'll do a very small showing of something we've done in that class. That'll be usually an intimate showing for the community of people, but people that might be interested in the class in future years would be able to come maybe to see one of those showings and they could reach out to theatre terrific and find out when those are happening. Those are more informal and more.
community. And then we have larger productions like our Harvest Festival production, which is usually in the last few years has been always timed with the Fringe Festival. So we will create a show this summer and that'll be quite a large production in the sense that that'll be a large cast production. So we usually include about a minimum of 10 performers in that production. And that'll be
in early September, so I think the Fringe Festival this year is September 5th to 15th, and we will perform at the venue which is an outdoor venue on Granville Island, which will be advertised with the whole Fringe Festival and will also be all the dates and times which I'm not fully sure of yet, I don't know if those things have been decided yet.
will be up very soon and they'll be on our website and they'll be also advertised through the Fringe Festival. And so that'll be our big production. And then we have all sorts of other productions that happen during the year. For instance, we're working on another production called Tree Drum, which is with Bill and Bill has been working with Theatre Terrific far longer than me. I don't even know when he began. He's been working.
probably over a decade with Theatre Terrific. And this is Bill's baby project. It's very dear to him and dear to us. It's a story of his, really his story of growing up as an indigenous man, but as a young indigenous person being taken away from his home. And...
and also then his journey to now drum making and the work that he does with drums where he leads the drum making classes in our theatre terrific. But the show which is being created is around his story and will also include for the audience a small circle in the audience to create a drum during the performance.
So it's going to be quite an incredible piece. Yeah, during the performance. Well, as a director myself, that sounds very intriguing. No, it's okay. Yes, I think it's going to be quite an interesting piece. And so we're going to work on that again this year, this summer. Yeah, it's... And then there's another youth piece that we're going to be working on, a youth project where we're going to be inviting...
younger community members to take part in that and we'll create a show based upon that, the details to emerge. But really the best way to get to know about what we're doing is to to check out our website and to link in with us on social media where you'll kind of get all the updates about when shows are happening and when you can see something and when you can partake it in something. So you know it's
and be a part of the community, how you can be a part of the community. Yeah. So do people, I assume because you're so inclusive that you don't need to have a whole lot of theatre experience to take part in some of this stuff. Yeah, great question. So that's a huge part of the inclusion kind of dimension is to also not limit people to somebody that's necessarily gone through a theatre school or had a lot of
background in theatre, we do include everybody, but I would say, or not and, I would say that we make our classes such that anybody can participate, but that everybody's gonna be pushed to a higher level. So that we don't, just because somebody doesn't necessarily have a background, that doesn't mean that they get a...
a card to kind of sit back and say, oh, well, I don't have experience, so I can't push myself. No, we demand of everybody a kind of level of artistic engagement. And that becomes also something that I think people really appreciate that people may think, oh, it's really inclusive. So therefore, we're gonna drop down the level to include everybody. But that's not what theatre terrific is. Theatre terrific is about exactly.
Exactly, you got it. Now in terms of so for people who do have disabilities, maybe visible disabilities, what kind of support do they get from from those running the class or like are people that run the class trained to deal with certain disabilities in any in any way?
So, I mean, training does happen along the way. And I would say all of our work is constant training. It's, we're constantly learning and having discussions about how we can better serve the community and how, you know, with everybody that's involved. And so we're constantly, I think, improving our practices. And, you know, I can speak to that more, but the, in general, in our classes, for instance,
we encourage if people regularly do have a caregiver, that that caregiver is included in the class. And so there are certain individuals that will have a caregiver with them in the class if they need that kind of support. And then that caregiver often is encouraged to be a part of that class also artistically. And so that becomes an interesting part of it as well, where nobody gets, nobody's exempt.
and everybody gets to participate and everybody's part of the process. And so in that sense, we'll have support workers, we'll have caregivers that at certain times will be a part of it. And those that are not with a caregiver, you know, each person at the beginning of each theatre creation class right now that we're doing will be in a circle and there's always a space for people to say they're evolving.
access needs that day because not everybody's needs are the same this week as they are next week and for different reasons. You know sometimes there are yes physical needs and access needs that we've got to be aware of from the beginning and and we know about them and we're supporting and then there are other emotional needs uh different changing circumstances in a person's life that need to be stated at the beginning of a class.
And so we created really a space where everybody states their needs. I'm gonna need this today. I need everybody to know. Yeah. And we find that, since we've been doing that, people are opening up and allowing everybody to know what they need and that creates a space where everybody's needs are met. Now, obviously there are situations where things happen and we realize that...
you know, we need to improve our race. And that's part of theatre terrific as well is that, you know, if somebody says, well, you know, like something happened to me last class, which really didn't make me feel included, or I felt that my needs were not being met, then we take it really seriously. And we sit down with that person, if they're, you know, able for conversation, we talk it through, or we bring in, and we have done this, we bring in advisors from, you know.
different parts of the community because we're so inclusive. There's so many different needs and we can't be experts in everything. And so, you know, we'll bring in somebody from, we'll bring in an advisor from, you know, let's say, you know, one example is coming to my head was we had somebody from the blind community and they felt that, you know, something was lacking in the way that we were doing it. And they wanted to see us improve our accessibility for people in their community. And so we brought in somebody.
to give a whole training for our staff around that community specifically and how we could make it more accessible to them. And so that's how we work. You know, we the best we can. And then you met you then you've just reached another level. It's instead of universal design, you've got universal theatre. Is there an age limit for this these programs or are you mainly targeted towards adults? For our classes, we it's it's adult.
However, like I said, we have different programs and that's something that we would like to to evolve is to have something maybe more of a youth program as well. But within the adult range, definitely no upward limit. In terms of youth, like I said, we've got a specific youth program that we're hoping to launch this year. So stay tuned for that.
But yeah, our main classes are usually for adults. That being said, that could be from, I don't know, it's a good question. I'm not 100% sure where we would draw the line. I don't know that I know the official line, but we have people in the class that are 17, 18, so I guess they would qualify as youth. Yeah, I guess so. There's a whole other market there for even kids younger than that that I think could
tapped into, which would be amazing. So expand a bit more on Harvest. This is your big annual production. What's any idea what this year is going to be about? Have you started working on that? So a little bit, definitely drawing the team together, thinking through some ideas. We one of the ideas that I had or one of the ideas that I want to kind of like
encourage us to continue developing inside of Theatre Terrific is that, so I'll back up for a second, the harvest, and this might inform the way I explain it, the harvest is this idea of a show that kind of, like the name suggests, brings together, is like the harvest of all the work we've done that year. So if all of our classes and all of our...
different projects are building skills and building community and building ourselves as theatre artists. The show becomes a way for us to kind of, in a little way, tie things together and, or bring out and harvest a lot of all of that. That doesn't mean that everybody that was involved all in the way is in the Harvest show, but it means that things that came up that...
beautiful moments and ideas and skills that were developed over the year come together in a beautiful way in the show, in the Harvest production, which is created during the summer and is a devised production, which means that it is created from the cast, from the bottom. So yeah, the cast and the directors and the, are all co-writing and creating the piece together. And so it becomes...
a very collective creation piece. Obviously, the director has to make some choices and we make some choices about the text that ends up being the final text. But what is being suggested by the co-creators, by the participants, by the actors, becomes integral to the piece. And this year, the theme that we've started to explore and which...
in the theatre creation class is the idea of inside and outside. So kind of juxtaposing that as a theme, what the difference between things that occur, you know, in all different levels, inside and outside. I mean, I think it's a theme that on a literal level has a lot of resonance post-COVID-19 where a lot of us, you know.
So, because on a literal level, that idea of these indoor spaces and theatres typically done indoors, but then our show's going to be outdoors and what does that change? That's on a very literal level, but then we can all think of the different layers and understandings of where we decide this idea of things that are inside of us or things that are outside of us or worlds that are outer worlds and inner worlds. And so we're exploring those themes. Where it's going to go?
Who knows? Not necessarily, just in my head. Exactly. Skies a little bit. Yeah. That could be interpreted in a lot of different ways. And you aim to be doing that on Granville Island you mentioned. But is this something you'd be charging for? Is this free admission kind of thing? So the Fringe Festival does, there is charging ticket prices. However, we usually find a way to include anybody that...
wants to be included if it becomes an issue for you to pay the Fringe Festival prices. We usually have programs to allow people to come in. So don't let cost be something that gets in the way from being a part of it. And how long of a production is your Harvest Productions? Are these? Like how long will the piece be? Yeah.
Yeah, so it's usually I would say it's around an hour long. Well, these are that's pretty involved for theatre. Like, how do you when it comes to to theatre in Vancouver, how do you think how's it going? Is it is it is it hard to get people out these days? I mean, you look around at the Netflix and everything and everything VR or AR that people are doing these days. How is live theatre surviving in Vancouver these days? So I, you know, that's it again.
such an important question, I think, something that everybody in theatre is thinking about. And, you know, on the one hand, I would say, yeah, of course, people are, you know, have entertainment at their fingertips in their house in ways that they've never had before. And that's obvious. And the choice is overwhelming. And, you know, there's all those things. But what, obviously Netflix and...
all of these different providers don't provide is community. And the kind of the live interaction that live theatre produces. So in a way, as I think the pendulum swings has swung towards, you know, kind of all this access to online entertainment and streaming, we're gonna see, we are seeing a pendulum shifting towards people.
wanting and needing different forms of interaction with human beings and with others. And I think theatre as opposed as, or in juxtaposition to film and television offers that. And so are we getting, are we aiming to have thousands of people at our productions? No, but we are definitely getting lots of people that,
You may notice that we're filling up on our classes and we are getting, yeah, and we're getting lots of people to come out to our productions. Can we grow? Of course, we'd love to grow and have more and more people come. But I think there is that. And I think as, you know, and it's another thing that as AI develops as well, we're gonna see the ironically an increased value in the creative arts.
Because. So now there's sorry to interrupt, but now now there's I think we've just come up come up on a big piece of your your harvest about inside and outside. We're talking about games. We are like getting back into live theatre. There's now there's this juxtaposition. You're welcome. Well, yeah, I mean, that's it. That's the that's that's it. And and I think yes.
Thank you. I mean, I think, do you want to, do you want to be a part of the cast? I should be, I should be at this point. Yeah. I mean, that's, you know, you're making me think that that's such an interesting, you know, dimension of this is that, is that moving from the inside to the outside? Also is that movement from, you know, being stuck in our bedroom to, to coming out and being outside with others, you know? So yeah.
So you say your classes are popular because I know I noticed on your website the spring theatre creation class is fully booked. I don't know if that's still going or now we're getting a little bit past spring. Do you normally fill up all the spaces in your in your in your classes?
Um, yes, I mean, we often get a good turnout. All classes are different, so some of the classes fill out, fill up quicker than others, especially if we're gonna mount like a new class, then that might not fill up as quickly because people aren't familiar with it. Theatre creation has been around for a while, and so I would say that that one fills out the quickest. But yeah, we get really good turnouts. And, um...
You know, and people come back. People come back year after year. We have some people that have been in the theatre creation class as far back as I've been there. So that means at least probably seven years in a row. So, you know, that's always a good sign. Yeah, for sure. Now, do those classes cost money? Again, I think you sort of touch on this idea that Theatre Terrific is not, you know, we're not gonna refuse people over money or something like that. So...
The classes do cost money, and outside of that, where else do you get your funding?
Yeah, so they do. There is, again, exactly like you said, there's a cost, but we never turn people away. And we always have ways of allowing for people to be a part of the class if financially there's obstacles. And so we make it as accessible as possible in that way. Where does our funding come from? You know, we're still...
largely at this point dependent on government funding. So we do get a lot of Arts Council and different Council funding. So the Canadian Arts Council is a big part of our, of how we get our funding. That's a big source of our revenue. But we also, you know, the community.
So there are people that see our work that are part of the community that also then come to fundraisers and we do some fundraising through that. So we gain some money through fundraisers throughout the year. And we are in the midst of trying, we were in the midst of hiring somebody to do to try and branch out and to do corporate funding and just to see if there are corporations out there that that want to have theatre terrific.
as somebody that they support and see as teaming up with to get their message out and our message out in kind donations. So, you know, media companies that maybe want to donate in kind and then, you know, be a partner in the work that we do. And so we're looking to branch out in that way, for sure. How many staff, like how many full time staff does the theatre have? Oh,
We don't actually have any full-time staff, even me, I'm not full-time right now. There are, I would say, in staff, inwards of around three or four fluctuating staff members. And so, yeah, so nobody there is full-time. We all have other work that we do and then come on and work for for Theatre Terrific in certain capacities.
as we grow and as we develop in our corporate funding and in our government funding, we hope to grow and be able to have a much bigger staff and be able to include more and more people in our projects. So there's lots of volunteers as well? Yeah. I mean, I would say we try to pay people as much as possible. But obviously there's always space for volunteers. So whenever we're doing a production, if people want to volunteer and help with front of house or in different ways.
Um, you know, we're always, you know, embracing of that. And people sometimes just want to be around the excitement of a theatre piece. So people want to be there. And so we always encourage that, but as much as possible, we try to pay people and honor people's time and efforts in, in, in, in, in some ways. Um, so that's one of the things that we do is to try and, and, uh, include people. But.
For sure, people do want to volunteer. And our board, which is a huge part of this, is volunteer. So in every organization, you have a board, and we have some very active board members. So yeah, that becomes important. Yeah, well, that sounds really good. Anything else to add today? Like, have we not touched on anything else that you think that we need to chat about when it comes to theatre terrific?
You know, just how, you know, I want to say how I really, and this comes from really the bottom of my heart, that, you know, if anybody out there that is listening to this and is kind of on the fence around, you know, I have some artistic interest, but, you know, I don't know. I'm not sure if I have what it takes. I, you know, I.
I don't know if it's really gonna be accessible for me. Is that, you know, I really encourage them to take the jump off the fence, so to speak, and come in and, you know, experience some of the work we do because it is so wonderful to be a part of this community. And the, you know, the amount of...
smiles and joy that I see around me and that I experienced in myself through the work is so inspiring. And I think it's just, it's, you know, I just really encourage everybody to, you know, to not hold back if they have that. Cause I know we all have that little voice and every artist has that little voice on their shoulder that's been there.
since they were young, it's always like, oh, you're not really an artist. You're not really, you know. Is this really a good idea? I know the feeling. Exactly, and we all say it. So you've got to turn to that little person on your shoulder and you just got to say, be quiet. Get off my shoulder right now. I don't need you right now. And then jump in. That's what I would say. Yep. Yeah. Absolutely. All right, so how do people get in touch with you long? How do they get involved with the theatre?
So, theatroterific.ca is our website. There's many ways to, there's ways to get in touch and to contact, to link up with social media through the website. And there are contact details there for the company to reach out to us by email. And that would be the best way. And I'm artistic director at theatroterific.ca. That's my email. So if anybody wants to reach out to me.
Personally, that's artisticdirector at theatreterrific.ca. So yeah, please reach out and let me know that you're out there and in any capacity that you wanna be involved, we have space for you. Yeah. Well, that sounds awesome. You have been listening to DDA's Encouraging Abilities podcast. My guest today has been Lon Hershler, the new artistic director of Theatre Terrific. It's a company based in Vancouver and they welcome actors of all abilities.
to come and explore the wonderful world of theatre. Lon, thanks again so much for joining me today. Thanks so much for having me. It's been a huge pleasure. And I'm Evan Kelly. See you next time.

Thursday May 09, 2024

It's a long process, and it's not cheap. We chat with the founders of Leash of Hope Assistance Dogs who are doing everything possible to meet the demand for service dogs to help the world become more accessible for people with disabilities.
Filling the Gap - Leash of Hope Assistance Dogs
We are back with DDA's Encouraging Abilities podcast, where we talk about all things related to disabilities. I'm your host, DDA Communications Manager, Evan Kelly. Today we are joined by Danielle Main and Tessa Schmidt, who are founded Leash of Hope Assistance Dogs. I've wanted to talk to them for a little while now. That of course sums up what that is. We're talking about doggos. We're big fans of dogs here at DDA and anything that makes things more accessible for people with physical or developmental disabilities.
Thank you for joining me today. My pleasure. Thank you. All righty. So Danielle, tell me a little bit about yourself. So as mentioned, I'm one of the co-founders of Leash of Hope. One of the things that we're very proud about, and I'm very proud about is the fact that our organization is run by two women that both have disabilities. I am low vision blind with optic nerve dysplasia.
And amongst running Leash of Hope, I'm also a full-time registered massage therapist and train as a competitive rower. So, oh, wow. That's a that's a lot of physicality going on. Yeah. And Tessa, what about yourself? I. I have a special career, and my main role in Leash of Hope is to train the dogs and the clients.
And alongside of that, I work with children as a BI. Oh, okay. That's interesting. So did you both found Leash of Hope Assistance Dogs? Or is this mainly your thing, Danielle? We both found it together. So when Tess and I came together, we both had...
very complimentary skill sets. And we noticed that there was a need within the industry and the community of people with disabilities that we felt like with our unique skill sets that we could kind of bridge a gap and fill. So the two of us together, me having more business background and my background with dogs was, more dogs with like behavioral issues. And then Tessa having a more formal background education and...
service dogs and dog training. We felt like our skills were very complimentary to be able to start something from the ground up. So what is your background with dogs?
So my, oh sorry, go ahead. No, Danny, I think that was in the... Oh, I'm so sure. So my background with dogs, first and foremost my education was doing equine sports massage, which led into extracurricular education in canine massage, and from there I spent some time working in vet clinics and then as well as
working in a grooming salon as a grooming assistant, as well as being a professional border for dogs, especially dogs with behavioral or medical needs. So that was my background with dogs before starting Le Chappot. And what about you, Tessa? I apprenticed under several service dog trainers.
that works with multiple different organizations and have learned a lot through hands-on and working with the Balanceable Canine Program as well. Wow, that's interesting. Now, Danielle, equine massage, canine massage, is that... I mean, equine massage, I've got friends who get involved in horses, so I understand sort of the need for that, but I've never heard of canine massage before. Is that a thing that people... Like,
look for that kind of a service? The main reason why I would get requests for that type of service would be anything from like dogs that were in some kind of sport, same as kind of with people, same as with horses. And, you know, the dogs might have very physical sport needs of whether it's dogs that are doing like agility or barn hunt or any kind of like,
canny cross and so just like people end up developing aches and pains and imbalances and then I'd also work on a lot of like steamer dogs with aches and pains and imbalances so Interesting So you you started Leash of Hope because you saw a need tell me tell me about that in you know I'm not someone who identifies with a disability so I Wouldn't recognize the need for a service animal or a service dog what?
What are the barriers that people are facing in order to access this type of service?
Um, so I would say that the biggest barrier would be availability, especially for properly trained dogs and the most evident way that that can be seen is the amount of people that are trying to self evaluate the necessity for dog and then train on their own because they don't feel like the resources are available for them to get.
professionally trained service dog. And if you look at, especially when we founded the organization, what was available at that time, it was very minimal, especially within BC. And so because of that, Tessa and I, both being people that were very active, that had unique needs, recognized that there was kind of a lot of gaps within services that are being provided, mostly because
of how long wait lists are for some of the bigger programs or how much people were having to go out of province to acquire a properly trained dog. And then the alternative to being people trying to, like as a lay person, raise and train their own dog and self-evaluate if it's appropriate didn't seem like the best option either. So we decided to go into this venture trying to fill that gap.
For someone like me, I'm quite ignorant about this process. Now we're talking about service dogs. Is that the same thing as a seeing eye dog?
Um, it falls under the umbrella of an assistance dog. Service dogs are considered generally like different as a seeing eye dogs specifically, um, or, or guide dogs specifically see seeing eye dogs or there's actually a school. Uh, so a guide dog specifically is a dog that's meant to guide and navigate, uh, someone with sight loss through a rigid handle often, or some form of handle.
But they all kind of fall under the umbrella of an assistant or a working dog. So what about the animals that you two train? What are they designed to do essentially?
We have three categories of dogs. So we have three divisions within Leisure of Hope. One is the guide dog division for people like myself who are low vision or blind. We have mobility dogs under a mobility division. And those are dogs that are trained to provide assistance to someone who has mobility challenges. Maybe they're wheelchair users. Maybe they're able to walk.
with an aid or they need walking support, people to walk, to ambulate properly and comfortably. And those dogs are tasked trying to often to do things like press buttons and pick things up, take off coats and socks. Yeah. And then the last division is our medical alert division. And those are dogs that are trained for people who are deaf or hard of hearing, may have other forms of invisible disabilities like PTSD, autism.
And the dogs are trained to do things like alert to when it's time to take medication or turn lights on, you know, sometimes even pull blankets off of kids and going, come on, we've got to get you a bed or find an exit if someone's in a state of distress because of the environment they're in. So all three divisions have very different specific tasks that they do for their handlers. Now, now Tessa, I would imagine.
given that there are three categories of training, there's gotta be three different approaches to training. Now, would you, like, say you select a dog. I'm gonna get to that selection process in a minute or two, but if you select a dog, is it, it's then trained specifically for one category, or can you train a dog for all categories? We do, that is a specialty of our program. We do cross train our dogs.
but they're all trained to a baseline of tasks. And then once they are matched with the client, the individual, then we finalize the training and put in more specific training if required to the individual. Now, how do you go through the selection process for an animal or a dog rather? Like how do you decide, this one's gonna be really good, let's train him, this one not so good, we'll...
find them a family or something like that. Where's that selection process?
So we do a lot of testing throughout the dog's entire time in the program during their in training period. We have our assessment upon intake and then monthly assessments after that where we where we go a little bit they're inclined to work still that they are are wanting
can be in this field.
And do you get into the training process and then discover that maybe this, you know, one particular dog isn't a good fit and then you sort of got to start over again? Yes, sometimes that does happen. Okay, so that and where like, where do you where do you get the dogs? Are there specific breeders that that sort of target your industry?
We do work with a few selective leaders. The majority of our dogs are actually rescuer dogs. Oh really? Yes. So you're sort of solving a couple of problems, not just assistance dogs, you're giving these dogs purpose and a home essentially? Correct, correct, yes. And we rescue dogs from all over North America. Oh wow.
What about Mexico? There's lots of good dogs down there getting rescued.
Um, Danielle, I think we definitely do have dogs from, from, uh, Mexico test is prompting me because of the original leash of hope dog was my guide dog, Pedro, uh, who came to me with that name as a street stray puppy from Mexico. And, um, one of the things that's neat about that is, is, you know, our motto is we provide hope at both ends of the leash for that exact reason. Cause we, we, you know, fulfill that purpose, but that's part of why we do such extensive testing and we work with our network.
to pull dogs in. And if nothing else, if we pull it, we rescue a dog or young puppy, and it can't work for a program. If nothing else, it's probably has a pretty decent temperament to be to have caught the attention of, you know, someone in our team, and it'll still make a great family dog, you know, a good member of society. And so it does, you know, double duty in, in doing a good thing, whether it helps our program or not.
Now, on that note, are there specific breeds that make better assistance dogs or better guide dogs? Because I noticed I've bumped into you both at our leisure fair, and it's not what I would have said as typical assistance dogs. They were like, you know, like some other kind of breed. So, yeah, I could just speak to that a bit. That's where the rescuing comes in, because we are a small enough organization that through all of that testing that we do.
We often end up with dogs that maybe wouldn't typically be working. And that's the nice thing, because we really test and look at the dog's individual temperament. We do end up staying away from certain breeds as far as ensuring that we meet municipal bylaw concerns, because there's lots of places, unfortunately, that there are breed restrictions.
Um, and in that too, you know, we, we do acknowledge that there's sometimes, um, inherently some problems if you're wanting to train a dog that, uh, might have a reputation for, for aggression. And some of that can be true. And then some of it also may not is really comes out to individual dog, but we recognize that that becomes a factor regardless. And so because of that, we do.
end up avoiding certain breeds and then otherwise the dogs that we look for have to be really solid in their temperament. They also have to be a certain size so that they're safe walking around in public especially in crowds and they have to be work-driven as Tess have pointed out and they have to not be protective in case you know something ever happened to a handler they need to approach someone or someone approaches them. So there's all of these things that we look for.
that aren't necessarily breed specific. And that also helps us because there's lots of people with different lifestyle needs and different breeds can fit those better for individual people. So my love for Chihuahuas means I'm never going to get a Chihuahua assistance dog. Probably not. But aside from that, too, part of what makes an assistance dog is that there has to actually be a need for someone to have one in public.
So besides for the Chihuahua thing, if an individual, as much as every people like dogs and they want to have a dog with them, there actually has to be a medical necessity that the dog is providing a purpose to help them to be in public. Yeah, of course. So I would think something like a lab or like a black lab or a yellow lab, those would make really good assistance dogs. Is there any particular breed that is one that kind of shines better than the others?
Uh, I think you could start a really big debate there. And I think that I would be trending on, on, uh, into delicate territory by saying that, um, I mean, personally, so my last dog, Pedro, the one who was a Mexican street stray, he was part red healer and Greyhound. He was a high energy dog and a really active person. My current dog is a standard poodle.
And so my dogs, for my specific needs, are these high energy dogs to keep up with the long days that I do of, you know, my job and training and different things. So I would have a very different bias and answer to that question I think then, you know, Tessa there who has a real love for labs, Tessa has a giant golden lab. Yeah, so I think the joke that I kind of make is for a guide dog.
Hmm. Labs and golden retrievers, I kind of make the joke of that they're really great for for being used as general program dogs, especially for handling to lay people, because they're so friendly and happy go lucky and easy going and even if they make mistakes, people are like, oh, that lab's funny. But they're kind of like giving someone who's learning to drive the guide dog will say or just drive, you know, like a Toyota or Honda Civic, whereas my guide dogs are like
driving a Ferrari for a guide dog. So you can't hand them to anyone. There are a lot and they test and challenge you but that's exactly what I need in a dog. And maybe one of you could speak to this, the question about, you know, what if there is, it's one thing to train the dog and get them up to speed, not mentioning Ferraris, but.
Is there sometimes an issue where a dog is not compatible with a client? Yes, yes, there is. And at that point, even though we've run all these checks and balances. Every school has hit this concern at some point or another where the dog is just not the right fit for the individual. And we would.
take the dog back and place another dog with the individual and place that dog with another individual. That's more suitable for what that dog's personality traits are, energy traits are. It's quite challenging for the dog because the dog is trying to bond with the individual and then moving on to another one and the individual as well, because they put a lot of thought into coming and applying for a dog and the process is long.
And it's hard, but eventually we find the right fit. And usually we find the right fit right out of the gate. Well, that's good. That's good, because I mean, your website says it could take up to 10 years for someone to wait for a dog. That seems like a ridiculously long time to get a service animal like that. That seems unfair. Why is it like that? Is there just not enough supply to meet demand?
Yes, that's you. That is the case with a lot of the schools and COVID did do a number, so to speak, on the amount of dogs that schools are able to produce because of the lack of socialization that happened in that period. And more people are needing the assistance of a service dog. Or an assistance animal, I should say.
So is that something we need to be focusing more on? Do we do we need I mean, do you for a service dog, where would someone get their funding? Is that are you guys supported by government programs or anything? Or is this covered by anything? We do a lot of like fundraising and we work hand in hand with our clients to fundraise for their dogs. We never expect anyone to pay out of pocket. There is some government funding out there, but I think.
The biggest thing is, I think actually comes down to a government level where we need to encourage the, our province as an individual to support the development of more professionals and programs to meet the supply that's out there. And that would help solve the problem as well as discourage people from putting a vest on their dog and going into public.
And then would also reduce the wait times on things if the government worked with an acknowledged more professional programs or individuals who are providing dogs at a standard that's being met for individuals. And I think that would help solve a lot of the problems. And lots of programs, including ours, do heavily rely on things like donations and fundraisers.
to be able to supply people with these dogs because they are expensive. So if I was to come to you and say, I would like a dog, I'm not worried about the money, how much from start to finish, assuming you've identified one of the categories and what I need and you needed to train a dog from start to finish, what does that cost? To be honest, it actually doesn't matter whether someone has the money or they don't. We're always gonna tell people it's a fundraising process because we are...
a registered charity, it's not like you're coming and buying a dog from us. But in total, the value of one of our dogs is about fifteen thousand dollars. What sort of issue like how long have you guys been in business?
This August will be 10 years, eh Tessa? Yep. Decadent. Nice. So what sort of issues did you face getting Leash of Hope off the ground? I think the biggest thing is that lots of other programs start as kind of satellites of bigger ones of other programs other places. It's not very common that you
that programs start from ground based up and for us it was really important that we built a program that met um assistant dog international standards and at that time the information on what that meant was readily available so we were able to take their standards and build our policies and training program based off of that. It was also important for us to to be an organization that actually
for someone like, especially with Tessa's background, to build a business, a for-profit business as a service dog trainer and go, give me $10,000 and I'll train a dog for you and then send people off. But for us, there was a big efficacy piece on trying to make sure that we were supporting the disabled community, a lot of which is like low income and also to hold the clients we work with responsible.
to a standard of training. Whereas the downside of being, I guess like for profit, especially in someone like Tessa's case, who could just go and train a service dog, is that once she's done the training and being paid, she doesn't actually have any ability to check up and make sure people are handling the dog appropriately in public anymore. And so for us, it was really important that the people we decide to hand these highly trained animals to be in public with.
were being held to the standards that ADI set that we were incorporating into our program. So they had the open the... So that... Yeah, sorry, go ahead. I was going to say, so that was definitely like the hardest part because we were starting with what we wanted to do in mind and we were starting from scratch. It was, you know, that was probably the hardest part about starting out. I would say, I don't know, Tessa might have a different answer.
But that is it is interesting that, you know, it's not just about the dog. It's about it's about making sure the people that get the dogs sort of know what they're doing. So is there a training aspect to that as well? Maybe you could answer that, Tessa. Yes, there is. So what's unique about our program compared to other programs is we spend a year working with the client after they receive their dog. And
We expect the client to commit to a certain number of hours over the course of a year where we gradually see them less and less and less so that we can ensure that the training is Followed and that they can maintain our level of training requirements.
This was designed because we felt that going to a school for two to four weeks and having all that information dumped into your brain was not retainable.
for an individual, or sorry, was not attainable for an individual to remember it all and then go home, back to their home environment and work with their dog independent of the program at that point. Now, Danielle mentioned an international standard. Where do these international standards come from? Who sets those?
Assistance Dog International is the recognized accrediting body of Silver Dog Schools. And so you kind of get accredited by them? How do they just come here and see what you're doing? Or how does that work? So international accreditation is quite a strenuous and extensive process for any program. We were well on our way down that stream to get that done pre-COVID and then
you know, the pandemic definitely put a damper on it. We previously did apply for ADI and we met a lot of the checks and balances except for the fact that in the States, I guess a nonprofit there is what our charitable status is here. So we'd applied only with nonprofit status and hadn't quite gotten charitable status yet. And so we had to return to it unfortunately and then the pandemic happened.
But it's quite a bit of red tape for programs to go through because at that point your dogs are at the highest level of recognition internationally. And it means that you meet the highest, you know, standards of training available and efficacy as far as ensuring that your dogs are being handled well and your clients are representing you well and are managing the dogs appropriately. And so not just any...
dog trainer or business can apply for this standardization at that level. And that I guess that leads my to my next question is what sort of competition do you have locally? Like how many how many people are in this game supplying dogs to people? Oh you know I don't think it's an issue of competition. I think the more people that are professionally properly training dogs out there the better.
where we have issues and I guess our biggest competition is people feeling that they are equipped to put a dog in public because they're watching things like videos online and it's not so much a competition as much as like I guess it does impact what we're doing because then you never know what you're going to encounter in a public place. And then there's definitely some people and trainers that
monopolize and make money off of that by telling people they will support and help train their dogs to be in public places. And again, there's that level of problematic discrepancy where it means that people aren't being properly supported to have their dogs in public. So I wouldn't necessarily say it's a competition issue. But those are the biggest things that I guess. It's a quality issue. And that's, that's where when we have people that come to us and go, oh,
Well, that's a lot of money to fundraise. I'm just going to go and buy a puppy and watch YouTube videos. That's that's where it becomes the most, I guess, problematic. At this point, how many dogs have you and Tessa been able to train? And adding to that, how many trainers have you got working for? Is it just you two running the show or is there is there more behind the scenes?
Um, we've trained 40 plus dogs at this point. We don't have that many teams because we are also because we've been around for 10 years, we're into that cycle of, we do prioritize people who have been approved in our program and already have dogs and we've got dogs retiring and we're needing to place dogs with existing clients. And we have a team of three main staff and then lots of volunteer power. Oh, nice.
And that must be difficult too. I mean, when you work with your own assistance dogs, obviously you're bonded to this animal, perhaps at another level than just a regular pet. So that must be hard to sort of say goodbye and then move into another animal. Yeah, both Tessa and I can attest to that. Like I said, my original guide dog, Pedro, was almost 10 when he retired.
And now I'm on my second guide dog, Starling, who you would have met with me at the leisure fair last time. He's the standard poodle. Yeah. And then Tessa, I'll let you speak to your own, but it's never easy. No, it definitely isn't. An incoming dog has some big cues to fill.
They will feel them in different ways is how I look at it. And so when when a dog like Pedro, for example, he's retired, is it is that because he just can't really do the job anymore? I guess they sort of start to, you know, not do as well just as any human would who's who's getting older. Yeah. And in Pedro's case, he did sustain an injury and you could tell he was kind of like not feeling it as much, not as as a
as keen to work and also being an older dog I think was he reminded me of like the grumpy old man yelling at people to get off of his lawn especially around the younger puppies in training so it got to that point we're like okay buddy it's okay um but in his case he just he has a retirement career now uh my my parents live remotely and uh his job is to supervise
you know, the collection of wood and things and stuff in my dad's workshop. And, and so I think he'll always be a dog with a job to some degree, at least in his mind, don't tell him otherwise. And as much as I wanted him to retire and live out his day directly with me, him being moved to family where he wasn't watching another job was much better for him. That's interesting. Sounds like a real good boy. Yeah. It's pretty incredible.
What else can organizations like DDA be doing or can we do better to support organizations like yourself? We love when we get invitations to come out places. I know we've connected at the leisure fair promoting whenever we have a fundraiser or any kind of participation where we're out in the community is always great. We love getting our dogs out into the community.
with people. We love collaborating with other organizations and figuring out how we can support that collective community between the two organizations. And that's, I think, is the best part and the best way that we can kind of be helped. So before we wrap things up here a little bit, how do people get in touch with you? You can follow us on social media. We have Instagram and Facebook with Lechapote.
We also have a website, leashofhope.com, where people can reach out by email. We do have an office online, but if you ever call it, it usually says that if we don't answer it, because we're out with the dogs, but we will call you back, then it's all available on our website. And definitely coming out and connecting with us in person when we're at events is another good way to find us. Absolutely. Just one sort of
final questions are sort of backtracking a little bit. I'm just interested, always interested in sort of the process of this. If someone comes to you, how long, like you said, some people need to wait 10 years for a dog, not because of your business or anything, but in particular. That's a general stat. If someone comes to you and says, this is what I need, from that point to the sort of the finished product, how long does that take? That process can
be anywhere like, you mean the application of coming in. So the way that that works is that someone goes on to our site, there is a little self-evaluation to decide if, to help you decide if you want to apply. Once we get that in, then there's like a phone interview and an in-person one where we gather what you need. And then basically you have to play the waiting game until you get the email that says we have a dog for you. And that can be anywhere from six months to two years.
We generally try to make sure that if someone is missed in the immediate placement season after they've applied that after that we specifically will look for and train a dog for that individual if they've been approved. And then, as Tessa mentioned, then they spend a year of support in our program before graduating and going off in the world, so it can be a. It's a bit of a process, but it's a lifelong, it's a lifelong learning.
Yeah, absolutely. We'll be in like TESF. Can you speak a little bit about the actual training process for say like a Mobility dog. How long is that and how difficult is that? I mean that must be training dogs to do specific jobs seems difficult because I was very poor at it with dogs, but I mean tell me about that process a little bit
Um, so we, that process is a two year process. The dogs all go through basic obedience and advanced obedience. And then we do task training after that. Um, we do heavily rely on our volunteers as well to take them out in the community and further ensure that the tasking, like teaching them to push a button is.
able to happen in any environment. But a lot of the groundwork starts with the fosters and then their training sessions with us as trainers, where we lay down the baseline and then they build it up from there. Now, can you, is it possible to teach an old dog new tricks or do you have to start with puppies? No, it is possible to teach a older dog.
We prefer puppies, but we can take in a dog anywhere from 12 weeks to two years, as our usual timeline to intake a young dog. All right. So, do either of you have anything else to add today? I mean, I don't think so. I really appreciate you taking the time to connect with us and meet with us. And
And it's just great to connect with some more of the community. Hopefully we'll be able to connect with DDA and some of the other patrons out in the community in the near future. Yeah, absolutely. We'll keep doing it. Well, you have been listening to DDA's Encouraging Abilities podcast. My guests today have been Danielle Main and Tessa Schmidt. They're the founders of Leash of Hope, providing assistance dogs for the disability community. Thank you for joining me today.
Thank you. I am your host, DDA Communications Manager, Evan Kelly, see you next time.

Thursday Mar 28, 2024

The disability community must have self-advocates. Meet Elliot Hedley, budding songwriter, filmmaker, and screenwriter on why being a voice for his community is so important.
Elliot Hedley: Disability Advocate One Song and One Documentary at a Time
Welcome back to DDA's Encouraging Abilities podcast. I'm your host, DDA Communications Manager, Evan Kelly. Now with me today is a friend of the association, Mr. Elliot Headley. Elliot is an extremely creative self advocate who creates music and films, which we're gonna talk heavily about. Having studied film at Capilano University, he uses his craft and abilities as a tool for advocacy.
Navigating life with cerebral palsy, he dedicates himself to uplifting the voices of individuals with disabilities. His commitment extends beyond the screen. He actively participates as a peer mentor in the possibilities...
Social Media Fellowship. Now Possibilities is another organization here in the lower mainland that supports people with disabilities. He operates his YouTube channel Red Fighter Productions 96 where he showcases some of his advocacy work and music. So Elliot, happy to have you here today. Thank you very much. Okay so Elliot, tell me a little bit more about yourself in terms of the music and film and stuff. So film, like it's not a film. Film
I became like, well, as a kid because my parents both are in the film industry. So yeah, so it's a whole big family thing. Oh, wow. So what did your parents do in the film industry here? Was it here? Yeah, yeah, yeah. Well, originally my mom was from London, so they costumed theater, right, make costumes for theater, originally. And then she transitioned to like costumes for film.
And my dad does props, same as my brother. So they build me props, like guards knives, et cetera. So. That is, so your brother does props as well. Yeah. That's really, you're right. That really is a family affair. Is it just you and your brother? I have a few more brothers, but they don't do the same thing as me and my brother. So you have a few more brothers. How many kids are in your family?
Um, so there's me, Jack, Eden, and Lee Baxter, about four of us. Cool. So, yeah, to their families, but yeah. But that's interesting that you're all involved in that. That must make it fairly easy for your mom and dad. Did they work together? I don't know if they're retired now, but do they work together on films and stuff? They used to, together. Yeah.
uh... the laughing but that did was got to know and now my mom is a off-duty so she is trained to do fifty without all our while is in the end uh... is that for physical disabilities or any sort of range of disabilities well it's what you would just a few non-disabled
I presume. Oh in July, oh wow, still working on it, that's amazing. Yeah, yeah. So anyway, we got distracted talking about your parents there, let's talk about you again. So you've grown up with cerebral palsy your entire life, how was that for you? At first it was tricky because people didn't understand me and even though the cerebral palsy is fixed in speech and physical
this phase. So, yeah, I did go to speech therapy for that. And also, thanks to my mom again, she got me a game called Rock Band. I think you've heard about it before. Oh, of course. Yeah. Yeah. So, the doctor said, oh, you're not going to be able to play guitar or do anything with your back hands. So I started playing like...
locked down to my left hand, like, it's okay, not doing anything big, but then over time, it was from like stuck in this one position to I can actually play notes.
Mm-hmm. Well, of course you can play notes. I've got video of you playing in a bass guitar. We'll get more into that a little bit later. Yeah, and so your musical aspirations started on rock band. That's kind of cool. Yeah, I think people nowadays ask, what is rock band? It's a 2000's thing.
That was before, that was after my time I'm afraid. You see, one of the reasons I wanted to talk to you, because I myself, I'm a musician, I've been playing drums for 40 years, maybe even longer, I'm not even sure.
And so you and I definitely have that connection. And so, okay, so you fast forward from rock band, did you, before going to university or anything else, did you transition into an actual instrument? And I don't mean to offend people who use rock band, but it is not an instrument. So I first started on guitar. So I was guitared and halfway in my...
say halfway in high school I transitioned to bass because I went to Sarah McLachlan School of Music. Oh yeah wow. Yeah so that helped train like local Eastman artists like myself to get more trained in the arts. So what was it like going to the Sarah McLachlan School of Music?
amazing is a meeting connections and people know each other is you all from the east side and how big of a school is that i'm not even sure about that uh... they get the football field though it is a very every hopefully have to speak three hours a year
What is the thrust of that school? I mean you were taking guitars so do they just offer a whole bunch of different musicians? Do they offer composition? Like what's the kind of thing? They do like vocals, they do drums, there's drums out there. Singing, songwriting, bass, etc.
and DJing too if you want to be a DJ. DJ. That's for another conversation. And so from there you went to Capilano University? Yeah. I literally went there 2016, so that's three COVID years and
I was the only guy with cerebral palsy in the group, so it was like, it's kind of like awkward moments, so, so, what do you have, like, what's your story? I said, okay, here's my whole backstory to my classmates. They said, oh, you have some, excuse my language for you, you have some really dark shit.
So in terms of going to either Sarah McLachlan school or even Capilani University again, going to these schools as a person with a disability, how did you feel like inclusion was? How did you feel? Did you feel accepted? Yes, Sarah McLachlan is going to do that one first.
And for me, because usually with a guitar, you have to use all your fingers, like, oh yeah, left hand or your right hand. But for me, I only can use three fingers. Okay. So I'm like my own unique style of playing. And that shows some extreme adaptation. Like, that wouldn't be an easy thing to do for anybody. No. No. No. Even for you, who's a drummer. Oh, it's impossible for me as a drummer.
I have never picked up a guitar really in my life but And and so so you got through that that transition working with with three working fingers And how did that change your approach to the guitar and songwriting or just playing? For me so if you give me a music sheet I won't even cannot read music sheets. I just like make things
like as any artist, they make art from anywhere. So if you gave me MC Sheets, I would be like, I can't read this, but I make lyrics, that's what I do mostly. Yeah. Yeah, that is a good bunch of my years doing music.
then for Cap U, I want to like follow my footsteps in my family. But I know being kind of a disability is a tricky thing in the film industry. So. Now you, now you went to Capilano University for film, correct? Yeah, for film, then I transitioned to documentary after like halfway points because
I failed, not failed, I didn't graduate from motion picture. But they asked me if they wanted to do documentary. I said, yeah, so I went for it every year. So I graduated from that. And so you finished, you've got your degree and everything like that? I got a certificate. Oh, okay, okay. Saying I'm a documentary filmmaker.
Oh, I gotcha. Gotcha, okay. And I was gonna, you know, one of my questions is, you know, what got you into film? Well, your parents, probably. Yeah. So, that's... Yeah. And so, are you able to sort of, obviously you're passionate about music because we can even, we're gonna jump a little bit more into that. Yeah, of course. So how do you, these are two passions of yours, filmmaking and music writing. Do you bridge those two or do you keep them separate?
Like right now, I own a project. It's for people with disabilities. It's about artists who have disabilities and do art. And I asked some possibilities to do directing. And I said, do you want me to do some music? Just maybe in the background? And they said, yeah, yeah, that would be awesome. So...
I'm making some music for them and directing their project. Oh nice. Yeah. Still don't have a working title yet but... And that's for doing some background music on some... Was that a documentary or something? Yeah, documentary. Yeah. Okay. Yeah. And so, Till, like, the band Lakewood Grey, can you tell me a little bit about that? So...
During COVID, everyone was super isolated and they were bored out of their minds. Yup. I started playing music like, not every day, just like every few days. And then I called out some of my old high school mates from back in the day, and they were like, hey, do you want to make a band? So we made an online band for a few years.
I started writing this song and I like
So it's just me, Andy, and Madeline, and then doing COVID, this is so risky, but you make a music video during COVID, that was the weirdest time. It was outside, so I think it was a bit safer. Or most of it was, I think. Yeah, yeah.
Now just for those listening, you can see this video they made with the band Liquid Grants on his YouTube channel. Again, that's Red Fighter Productions 96. That would be the search term. And so you've created this band during COVID and you've got this one song. Is there more music we're waiting for?
her own soul, art, you know, so it's hard to keep track of those two. I want to do more, it's just so hard to get hold of those at times. Oh, I feel that pain when it comes to putting bands together and keeping things together and keeping the music flowing. It's not an easy thing to do. So Lakewood Grey, is there a meaning in that name? So Lakewood...
It's a street name nearby my house. So, and gray is the English term for gray, so. So, gray means gray. Yeah, yeah, so people who aren't educated about, like, G-R-E-Y, gray, is the English way, but the American way is with the A in it. Right. I gotcha. Yes. So we're trying to have, like, kind of a folky...
kind of English style of playing, but yeah. Now did you write the song? Yeah, I did. Me and I guess I'm kind of mad at her because she's awesome at writing music notes and I'm good at writing lyrics. Nice, oh, so you wrote all the lyrics to the song. And what's it about? Let's go deep. So, you know, like, everyone doing COVID time, they like social distancing,
and can't see each other. I've thought about that, like, I want to see that person. How does it feel to be that far away from the person you can't see? I guess you as a person who's stuck in a house too or apartment, how does it feel when you want to see a friend or a family member?
It's kind of, yeah, that's the basic story of that person. Of persons who want... Yeah, that's basically the story. And I should mention that the song is called Mirror, right? Yeah. Okay. Yeah, and the music video is so great. There was a great team who helped me film this.
So where did you record the music? So... It was mostly on our computers. Okay. It wasn't like a professional setting. Well, it sounds pretty good. It sounds pretty cool to me, and I've been in music for a long time, so... Yeah, and um... It's like... Okay... Let's record it on our computers. I was there...
sketchy about it first because I'm like, uh, I'm gonna sound like, very bad, because sometimes audio doesn't sound good on computers. No, no, definitely not. It's nice to have big padded rooms and lots of natural reverb, right? Yeah, but it's amazing how it turned out, just from our computers. We're just like three different places.
Which I think is amazing. It's like, you know, I've been in, like I said, I've been in music for a long time. I've, you know, was making music and recording in studios before the advent of the real sort of digital home studio started making its way into things. And there's so much you can do just on your own. I mean, look, we're doing this podcast on this machine that fits into the palm of my hand, you know? And some of them can even do it on your phone. So it's amazing that we can even produce kind of the things we do with.
with what seems like limited resources, but they're not. You can actually produce something quite good. Yeah. And so that goes into my next question. You're a lyric writer. So where do you find your inspiration on topics to write about? It could be, for example, I wrote a song. It's not officially like, like,
In the works, it's just like when I have emotions sometimes, I just write lyrics down. Like, I was talking about pain because I was in that moment that I felt pain. Like, didn't things happen to me sometimes? Sure. You're a human being. Yeah. We're all human beings. Do you, I mean...
Do you use the music as part of your advocacy work or does that not play into it so much? That's a good question. Music comes and goes when people are naming me like for what
And I can tell it's a part of your life too. Mm-hmm. Um, it's like when you just pick up a guitar or pick up a drumstick, you're like, it's a part of you. You can't escape it. I know that feeling well. Exactly. Mm-hmm. Now, sorry, keep going.
No, you go first. Well, I was gonna go back into the video. It's actually kind of a nice self-produced work. Did you have to spend a lot of money on it? Did you direct it as well? I directed it. Yes, I did. Produced it, and I worked on it, and directed it. And what did you shoot it on?
It was like per second, like how much frames per second. Yeah. And we said that I changed it to 4K, so it was much more crispier. For camera wise, it was like my friend's camera. I don't know what type of camera it was at the time, because I was like, oh, here's all the nice equipment. Let's use his equipment. Yeah. When in doubt, use someone else's equipment in case it breaks. Yeah. And so did you edit it as well?
To be fair, I'm terrible at editing. I just hire one of my friends to do it. Yeah, that always helps too, right? I'm not a great editor either, but I try. And that was all done basically for free? You didn't have to spend any money on it? Nope, not a penny. I basically paid everyone for videos and...
Pizza. Beer and pizza is a good motivator. Yeah. OK, so I want to head back into film. You made a short documentary called Don't Dis My Disability. Why did you make that? To be honest, I feel like people with disabilities don't get that much attention in the workforce.
Yeah, we know that. Yeah, and usually they're like, oh, they're like, maybe in the corner, just like, oh yeah, I didn't know that person has like autism or psoriasis or et cetera. But I feel they need to have a voice to be honest.
When you watch this film, how do you feel about that? How do I, are you asking me how I feel about it? Yeah, well, you watch this. Well, yeah, it's like you feel like these people want to be heard and seen and taken seriously. You know, because you're you the people you use in that film are they're not just physical disabilities, like someone with cerebral palsy might experience, but people with with developmental disabilities as well.
You know, and it's a nice little piece that really gets the point across. Now, for those who don't know, Don't Dis My Disability was showcased at the 2020 Beyond the Curve International Film Festival in Paris, where it was listed as a finalist in the best documentary category. So how did that make you feel? I mean, it doesn't sound like you won the award, but even being nominated for something like that seems pretty cool.
I was by chance, so basically I had $100 as a budget. And I put my film in a couple different festivals. And after that one, after the first one, I started getting tons of attention. People were asking questions about the documentary.
Why choose four people and not two? I'm like, well, I think you have multiple personalities and multiple different views, right? Yeah, of course, and why wouldn't you? I mean, for me, it seems like you could even make a longer form of that to really get that across. But why did you choose a Paris film festival? So, as I said, my mom is from England.
I like Yoruba a lot, so I just like, put Paris, because I like, I just want to see if they're going to the Ikemona, so, they like it. Yeah. I just like, I thought it was something in Ireland, England, Paris, yeah, like a couple of different places. Nice. And, and, and so when you got the nomination for that...
How did you feel about that? I was surprised to be honest. Like, so many from Canada and like Paris, I was like, oh, they just go like pass off, see there's nothing like just a okay film, but no. Like, being a finalist is like a big thing. Yeah.
Absolutely it is. I don't know if you're aware, because I know your friends with David are film-makers. Have you seen the documentary he put together for DDA, Doing the Impossible, the story of the Developmental Disabilities Association? He told me about it over coffee one time. Yeah, and it won three Leo Awards last year, BC Leo Awards, and was nominated for a...
for a couple of others and nominated at the Yorkton Film Fest, which is pretty big here in Canada. So it's nice to get those recognitions, isn't it? Yeah. Like, I want to like work with, well, I want to work with him again to work on a other project, I think, about... Now like on the bigger picture, do you think Hollywood is getting better at representing people with disabilities, since we're talking about film?
Um, slowly and surely, yes. Like, it took years for people like, in Hollywood to represent people of color too, right? Like, Asians, blacks, so on and so on and so on. But also, I see there's some improvements, but it needs more time, I think. Mm-hmm. Needs more representation, do you think? Yeah. It's, they don't see us like, oh...
He's just a background actor or something. I said, oh, he can do more than just be a background actor. Yeah, you get the little token rolls, right? And that's what you want to see less of and more actual parts. How do you feel about that? How do I feel about that? Yeah, I think representation is very, very important.
When you know we're talking about inclusion and acceptance, I mean, Hollywood and media in general is supposed to be a reflection of society, right? And where, like in the latest stats reports from Stats Canada, 27% of people in Canada identify with having a disability. Whereas we're still, in terms of representation in Hollywood, I think it's somewhere below 3%. 3%? I don't know. So there seems, I'm sort of pulling that number out of the air, something I've read fairly
But at the end of the day, media still isn't really a big reflection of what's going on in the world. So maybe there's room for improvement. About 24% room for improvement. Yeah, like, how about somewhere like, um... Back in the 1800s, just like, in the 18th century, like, they used to put people like me and people with disabilities in albums.
They thought we were like, uh, we're cursed or possessed by the devil or something like that. Mm-hmm. They just thought then they didn't understand what our disability was. Exactly, yeah. Or just didn't have the supports or means to, to, to offer people a life outside of an asylum or some sort of thing. Yeah. But now I think...
society is still learning about like, disabilities in general. Yeah, I mean, you know, you live as someone with cerebral palsy and and who identifies with that disability and the big question is, are we doing better? Is Canada doing better? Is BC doing better? How are we doing in terms of acceptance? I know the price of the price of Canada, but I say, I think we get in there because
People in parliament are recognizing that all people with disabilities should be there to help people. And not just put them on sidelines like 20 years ago, 30 years ago. They should be recognized for their treatments. Absolutely. And the difference between, you know,
not doing anything and being successful, and being successful, I mean like contributing to society like a typically developed person, is simply a matter of having the right supports in place. Yes, of course. It's the same with anyone in communities. They're like, oh yeah, we're gonna have this one person and have the next person, have the next person, but it's not that easy. Each person is different. So how important is it for you to be doing this advocacy work?
It's important, like, it's important since day one I was born because I was born with a disability. That's, like, it's not easy, but, like, everyone is born differently and disability is a part of who I am. A part of my, like, a part of me. Mm-hmm. Mm-hmm. Exactly. And what can DDA be doing better to help the disability community to be accepted and represented?
Uh... that's a good question. I think there should have people off set, me and who's the filmmaker, but have people like who can clearly speak for themselves and show what DJ can do in their own community.
and podcasts interview musicians and filmmakers who are advocates. Yeah, yeah. Yeah. One day I will actually like to like sit down and chat about stuff with you. Well, this, this, this is one of many podcasts we can do. I'm sure I'm certainly open to that. Yeah. We can sit down and.
hash out some different angles of things. I think today was just a nice way to get to know you and understand what you're doing and what you're bringing to the community. And it's been great having you. Yeah, thanks. And also, I'm also currently writing a script for a film that's down the pipeline, but hopefully I can get it done before August, September-ish, because...
It's a fantasy project. Oh, nice. Yeah. So that's a screenplay you're working on. Is that for a feature-length movie? A miniseries. Miniseries, cool. Yeah. Then you get to go through pitching that with everybody. And that's another long process. Yeah. Well, I'm really good to get people convincing.
Oh yeah, good, good, good. So in terms of a fantasy series, what kind of like are we talking about, Game of Thrones type thing? Uh, it's gonna be like dark fantasy, uh, basically my picture is like, what if we didn't have technology that can find our family history, right? Mm-hmm. It'd be good to like actually find your family history in the books and stuff like that, right, the old days, before we had that stuff.
So I just wanted to see that angle, how people back then had to find about themselves. Sounds interesting. Keep a roll for me. I don't act, but it'd be fun. Yeah, I think it's interesting, people with dyspnea or dyspnea in general, I'm not really...
with and down their history that much. Mm-hmm. So this fantasy thing would be targeted and around disabilities as well? That's a good question. It's not targeted for today, it's just like, the whole theme is history and family. So you don't know who has it this way back then or.
I'm basically writing my own book, but I don't know what story I'm going to tell. A mini-series, that's a lot of writing. So that's just a matter of sitting down and getting on your computer and getting it done. I applaud you for that effort because that's not an easy thing to do. No, it's not. I get people interested to come from boards and be saying, yes, we want to do this.
I love having this chat with you. No, this has been great. You have been listening to DDA's Encouraging Abilities podcast. My guest today has been disability advocate, musician, filmmaker, and now screenwriter, Elliot Headley. Elliot, it's been a pleasure having you on today. Hey, you too. Have a good day. I'm your host, DDA Communications Manager, Evan Kelly. Thanks for listening.

Thursday Mar 14, 2024

It's one thing to have a disability and feel left out, it's another to be part of a marginalized group as well. We chat with Rabia Khedr, founder of Race and Disability Canada in this Encouraging Abilities podcast.
Standing at the Intersection of Race and Disability is Rabia Khedr
Welcome once again to DDA's Encouraging Abilities podcast. I'm your host, DDA Communications Manager, Evan Kelly. Now today we're talking about one thing that is actually two things.
In this world, unfortunately, we see a lot of discrimination. It can happen to any marginalized group, such as people DDA advocates for, and those are people with developmental disabilities. In our podcast, we also talk about accessibility and disability of all kinds. Now, people with developmental disabilities are more likely to be bullied, they're less likely to finish school, and less likely to hold down a job, even though many are perfectly capable of doing so. Now, another form of discrimination we see around the world is the one that's based on race.
Now, what if those two became entwined? Well then you have a potential for intersection of problems when it comes to acceptance and accessibility. Joining me today to discuss the intersection of race and disability is Rabia Kheder from newly formed organization Race and Disability Canada. Rabia is dedicated to equity and justice for persons with disabilities, women, and diverse communities.
They most recently served as board member of Accessibility Standards Canada and the Minister's Disability Advisory Group and previously served as a commissioner for the Ontario Human Rights Commission. She is the National Director of Disability Without Poverty and CEO of Dean Support Services. A founder
of Race and Disability Canada. She is also a board member of the Muslim Council of Peel, in Ontario of course, and a board member of the Federation of Muslim Women.
Rabia has received numerous awards for humanitarian services, including a Queen Elizabeth II Diamond Jubilee Medal. She holds a Bachelor's of Arts from the University of Toronto and a Master's of Arts, and she is also legally blind. So Rabia, thank you very much for joining me today. Thank you so much, Evan, for having me. And perfect pronunciation of my name. Thank you. Nailed it. That's good. Pardon me. Now.
Let's, right off the bat, you founded Race and Disability Canada. How did you get this off the ground? Well, I've been doing this work for years, almost 30 years. So my initial, you know, grassroots advocacy came out of an organization called Ethnoracial People with Disabilities Coalition of Ontario. And we were talking about the layers of barriers that people with disabilities face when it comes to race, faith, culture, gender.
age coupled with disability. And we didn't use the word intersectionality because we were really grassroots. We weren't running around in academia having these conversations. And fast forward, continuing that work, I discovered that there were huge gaps. And as somebody with lived experience, I'm blind. I grew up with siblings with intellectual or developmental disabilities for whom I was an advocate.
and or even substitute decision maker in different contexts. I recognized the exclusion. I lived the exclusion in many ways when accessing supports and services. And there were many other groups that popped up with similar needs through the Tamil community, South Asian community, at large, Asian communities, racialized peoples. And...
When I participated in federal space at the beginning of this century, you know, the 2000s, I discovered that our national conversation looked very white. There wasn't a lot of diversity from an intersectionality perspective, visibly present in the national disability landscape. And I stepped back and I focused local because I didn't belong there.
Fast forward a few years later, I went back, I did a master's degree, I founded Dean Support Services, and I went back to engage nationally. When I went back to engage nationally in 2017, I realized that again, nothing's changed. We still look the same.
culture still monopolizes the conversation on disability and disability policy in this country. So I came back and I said this isn't good enough. I reached out to my friends in other organizations and I said we need to form Race and Disability Canada to specifically talk about this intersection that makes us very visible.
coupled with our disability and poses all sorts of obstacles and barriers in our full participation in society. And that is equally true for folks with intellectual or developmental disabilities. Yes, absolutely true. So when you want to say how do you get it off the ground, how many people have been involved in this? And I know you're largely funded by the government of Canada, correct? Well, we did manage to secure a grant.
last year and yes, the work that we're doing right now is federally funded, which is really great. They have taken on some of the equity language and conversations that I've been having serving on the ministers advisory group and serving on accessibility standards Canada initially. It's really refreshing that they are looking at disability from an intersectional lens, particularly looking at that intersection of...
equity issues around race. And so we did some work initially at the grassroots level. We continued to talk about this issue wherever we could voluntarily or in other work. But really being able to mobilize resources and do real solid work hasn't happened until the federal government stepped in with its grant.
Right, I mean anything like this on a grassroots level is, it's got to be tough to do. It's got to be tough to find people to back it and it takes money to do something like this. It definitely takes money, especially when disabled people are leading the work themselves. We are the experts and it's important that we have the supports we need to leverage our expertise to bring the change that we need.
In terms of working with the government, have you been able to change some of the language within policy? What sort of effect have you been able to have so far? Well, like I said, they actually have put in their calls for proposals, applications for funding. They've recognized that there needs to be work done on equity and intersectionality. So, for example, at Dean Support Services,
just secured a grant specifically looking at equity and people with disabilities and knowledge mobilization. So this is another project that we will be getting off the ground, creating tools and resources and building capacity of the disability sector in Canada to appreciate, understand and respond more effectively.
to the lived realities of diverse communities of people with disabilities that have called Canada home. What is the IDEA project? And how does that relate to race and disability Canada? Well the IDEA project is essentially IDEA's the acronym, Inclusion, Diversity, Equity and Accessibility. So it's really to bring together research.
to better educate and inform disability organizations, employers, and society at large, how to better address the needs of people with disabilities who are racialized, who represent equity seeking groups.
needing accessibility, needing accommodation, but to look at the whole person who needs to belong, whether they are accessing employment opportunities or other opportunities within our society. And how are you reaching out to these groups and what sort of support and reaction have you been getting? So we are creating tools and resources, we are holding
focus groups, we are making presentations. So we're really bringing together the information and the needs out there to be able to appropriately respond. And you're doing podcasts. Yes we are. And what about Diversity Works? Is that separate from all of this?
That's totally separate. That's me, you know, in 2000, end of 2001 saying, I am quitting my full-time job because, you know, I worked for an employment service providing supports for people with disabilities and accommodation and access to employment. And I, you know, found myself in a situation where a colleague of mine was dismissed, who has passed since then, who had a disability.
And I was like, whoa, if we cannot retain a disabled person in an agency providing services to disabled people to find jobs, something's wrong here. I can't deal with this anymore. So I needed to, you know, balance my philosophy and my work with my family life. And I walked and decided to open my own consulting company so that I can do the work that has impact. And is that, I mean, outside of Race and Disability Canada
is the consulting company that's still your sort of bread and butter type thing? No, no, it's just a side hustle that sits on the back burner. And once in a while, somebody invites me to be a keynote speaker or something like that. I'm really not taking on large projects. It's more about speaking gigs. But my real work is disability without poverty right now. Right. That's right. You're quite, quite heavily involved with that.
And you talk about the employment and disability, it's, you know, that's a big thing for DDA as well. The thing I didn't mention is we operate another side of us, which is called Jobs West. And we work with clients and employers alike to get people working. And we employ about 100 people every year. So it's quite a successful thing. And it's something that we really got to focus on because, you know, I just pulled a few stats.
about the visible minority population with a disability in Canada. I'm sure you're probably quite aware of this. And it's visible minorities with a disability in Canada, both men and women, are around 14 to 15%. So that's a lot of people. That's a lot of people that are able to work and just need the supports to get going. Absolutely. And there needs to be a recognition that they face.
further discrimination, not just on the basis of their disability. And it's the one thing that I think businesses need to sort of recognize as well, because the buying power of the disability community is in the billions. So if we have these people working, they're going to be spending just like everybody else. Absolutely. So, let's go. You have a catchphrase, I don't waste time seeing a spend time doing. I love that.
What has your experience been like growing up in Canada as a person with blindness? I know you got here when you were, I think, about four years old, correct? So you essentially grew up here. That's what you know. Well, absolutely. This is what I know. This is home. And growing up as a brown kid in, you know, a mainly brown Muslim kid, actually, in a mainly Catholic neighborhood where the only two colored families were Catholic.
was challenging, to say the least. Being a family of four children with disabilities, we faced, not only did we face exclusion in the mainstream, but we faced exclusion within our own cultural communities. We faced exclusion within our cultural communities, in our places of worship. And that's the lived experience that drives my work.
And when I say I don't waste time seeing, I spend time doing. You know, as years went by, my vision, uh, got more limited. And by the time I was in my mid thirties, I basically started to say, yeah, I'm blind, it's no longer quote unquote visually impaired and I never liked visually impaired language to begin with. And you know, I, I just found it easier not to focus on, you know, the visual cues and just.
do what needs to be done, so speak truth to power and shake up things and make the change that I want to see. Now in terms of your own blindness, that happened a bit later in life, so did you finish your education before that started happening? No, no, I have an eye condition from birth, so I never saw it perfectly. So I was, I was quote unquote legally blind all my life. But functionally, completely, like more or less.
not having much functional vision came later. So I went through the school system. I faced exclusion again in many different ways given my identity of my faith, my color, my gender, my disability that people didn't understand. But I muddled through school, I made it, I went on to university. When I went back to do my masters at that point, I was quote unquote blind, totally blind.
more or less. Now, growing up, what kind of support did you get for, I mean, I know we're talking about intersectionality and all that stuff, but in terms of your vision, what kind of support do you get in this country? And like, do you have any sense of what that's like compared to other countries? Evan, initially, I was mislabeled and misplaced because, you know, the school, I went into the school.
And you know, there's a longer back story to this, so I don't know how much you wanna know, but you know, I sat at home for four years in this country when I arrived. I didn't go to school until age eight. No one ever asked my parents, is she in school? You know, I went to the best eye clinic at the best hospital in this country. I was a textbook case for them, but they never asked, is she in school? And that makes me wonder, you know, is it because we were a brown family? It never occurred to them.
When I went to school, I was mislabeled and misplaced. The school psychologist assessed me and put me in a general learning disability class, not recognizing that it's not, that I wasn't doing well on his little testing because I couldn't see the stuff. He thought I couldn't process the stuff. That's just, Yeah. So it took a few years for teachers to figure it out and bring in CNIB to do an assessment. And then they had to label me legally blind. And
you know, as an exceptional student, whatever the heck that means. And then eventually I started to get, you know, a nice crisp copies of things in larger print. Slowly as technology evolved, I started to get, you know, a closed circuit TV. I started to get audio books. I had some maybe, you know, volunteer support. One of the best skills though that school ever taught me.
was typing, you know, when we had typewriters. Mm-hmm, I do. So, you know, so my fingers, you know, my ten fingers fly on a laptop. I have no issues. Just give me a keyboard anywhere, man, and I can do my work. And technology is phenomenal today. Today, like, you know, to kind of quote Charles Dickens, you know, it's really badly.
It's the best of times to be disabled today. I modified the quote, obviously. Well, in anything from like, I mean, here at DDA, our clients like to use a lot of iPads. There's a lot of interactive stuff they can do there. And what's becoming really popular is the virtual reality stuff. You know, like the, what are they called? Meta, the, anyway. So they're able to like put that on and like go to different places in the world.
without leaving if they can't, if that becomes really, really difficult. Oh, absolutely. Yeah. The experiences through technology are tremendous. For me, as somebody who's blind, there's so much access to information today that I never had before. Most of my life skills work through my technology. Banking I do independently.
you know, my recipes are online, I can search them up and you know, just just technology is phenomenal. My instant pot for cooking, you know, like all these things, you know, are are day are impact my daily quality of life. Huge. Yeah, you need to get a thermo mix. If you're talking kitchen. Okay, phenomenal.
uh... but yeah it's uh... you know i have not done a couple of other interviews with uh... one of the heads of the rick hansen foundation out here and uh... but but at the same time you know adaptive tech gets limited at this in the same breath because you know he's he's in a wheelchair from an accident uh... when he was twenty seven and his wheelchair cost thirty eight thousand dollars oh yes and that's not all covered you might get something from the government
but you're largely on your own buying a car essentially. And that Evan is privileged in this country. For many people around the world, a basic wheelchair is out of reach. Yeah, exactly. And they literally physically crawl from point A to point B. So we have a lot of things to be very grateful for, but even here, you know, for the average person with a disability,
You know, it's even a low tech repair on a wheelchair is not affordable. Yeah, yeah, it's on it's on that, you know, that kind of blew my mind that, you know, that's one thing that people pardon me, sort of don't understand is like when it comes to just being able to afford to live. And we you know, we're hoping that this new CCB benefit is good. And there's no clawbacks and stuff like that, just to help raise people's quality of life that, you know, it's expensive.
to be disabled. Absolutely. There is an added cost to living with a disability and people with disabilities who live in poverty currently, it's one in four people at least with a disability live in poverty today. So we are looking at deeper and deeper poverty and harder and harder to thrive. And it just compounds the barriers that they already face because of their disability. Yeah.
The irony is there are so many people in this country that identify as having a disability. 27% now. 27%. And if they, you know, we have so much to offer if we are given the support that we need. I am succeeding in my work because I have the supports that I need to do my work.
If I don't have those supports, I cannot work and I cannot earn. If people with disabilities don't have sufficient income to pay their rent, have food, have access to transportation, have basic medication that they might need or a repair that they might need to their assistive device or mobility aid, they cannot get out the door to even think about working.
or volunteering. But if we give them that safety and security of the Canada Disability Benefit that brings them to the poverty line, then they can get things going to be able to consider possibilities. What can they do? What is possible for them? There's endless possibilities of contributions that disabled people can make.
to their family, community, and society. We just have to have the right supports in place. Yeah, exactly. I want to track back to the education, your experiences being in schools in Canada. Now, you have kids, correct? Did I read that correctly? Yes, I do. I have four adult kids. Four? Yes. I have two. That's too many. No, it's not. Somebody has to contribute to the tax base, okay? That's true. We need people. That is true.
Now, have you seen, like, through their eyes, through their experiences, have you seen stuff like this improve in terms of marginalizations? Well, I live in Mississauga, which is pretty diverse. So things have changed for them. For example, you know, when I grew up, the demographics weren't here. Like the halal food wasn't here, man. I had to settle from vegetarian everywhere I went.
you know, Muslims are meat lovers. Yeah, halal food just opened near my house, actually. Yeah, and now, you know, in Mississauga, like, it's everywhere. And, you know, anywhere in this country, you can always find something halal somewhere. So that's a huge difference, and it contributes to belonging. Food is a bridge builder. Absolutely. You break bread, you belong together, right? I started to wear hijab when I graduated university.
My girls chose to wear a hijab as Muslim girls in grade school for God's sake. Things definitely changed. My kids don't belong anywhere but here because their parents come from two different parts of the world. So this is absolute home for them. However, today what's concerning to me is the fact that
things are going backwards as a society with Islamophobia on the rise, with global issues having such local impact on our social fabric. I'm deeply, deeply concerned about our youth and their future. You also mentioned something, since COVID-19 you feel that there needs to be a new normal for people with disabilities. What does that mean? Well, you know...
The system keeps talking about building back better. And I'm like, no, no, no, back was not better buddies. We need to build forward better. You know, we need to learn from the exclusion that able-bodied people start to feel during COVID and the provision that they put in place to have accessibility, right? So when COVID hit, we locked down.
we flowed money like rapid fire to able bodied people so they could have their basic needs met. Right. For the most part. Well, they kept the liquor stores open, right? Oh well, whatever. Yeah, exactly. Like those privileges that able bodied folks wanted, they insured were available to them. And you know, things that people with disabilities had advocated for to be accommodated.
such as work at home became a new norm for able-bodied people. And that was a giant step. Now we're starting to build back better, so-called, which means we're going backwards, in my opinion, telling people you have to come in to work. Whereas for disabled people, they are more productive if they are accommodated. And if that accommodation means work at home, you don't have to take
two hours in the morning at the mercy of service providers to get ready, a pair of transit services to come and take you to work, and the snow to be shoveled and blah, blah, blah that adds like, you know, four extra hours of work to your eight hour workday and exacerbates your disability experience. When you can be, you know, twice as productive sitting at home in those eight hours. I think it's, you know,
Like the return on investment of letting somebody work at home is far more than bringing them into the office. Yeah, absolutely. Yeah, absolutely. Now we sort of touched a little bit on health. In terms of the intersection between race and disability, I know the First Nations people out, the Indigenous people out here, often say that their access to medical health is not as good.
So where does, where does the, in your experience, does, where does that fall? Where does the, the intersection of race and disability and how is that doing in terms of our medical system with your experience? Again, our healthcare is tailored traditionally to, you know, healthy, white able-bodied men. We've fought hard to make sure that.
health care is responsive to the needs of women, recognizing that a lot of our, you know, again, medical models are based on colonial practice. Those practices are built to exclude racialized communities and they don't respond effectively to the needs, diverse needs of racialized communities who have different ways of knowing and peeing.
given their cultural experiences, their transnational experiences, their migration journeys. You know, when we talk about health and healthcare, for example, again, let's just, you know, use food for argument's sake. We have different food routines and habits and preferences, and those contribute to our health outcomes. And if the system...
doesn't recognize what those are, then we don't have equal access to health care. Mm-hmm. And cultural beliefs, I think, would play into that quite a bit as well. Absolutely. Absolutely. And historical abuses, you know, when we've experimented on people who are black, for example, and hence the fear of immunization.
And that's just, you know, you just mentioned like there's a historical and cultural factors that have shaped the relationship between race and disability. And, you know, how do they continue to influence contemporary attitudes and policies? Well, it means making space, investing in getting people to the table, not just, you know, expecting us to come, but deliberately reach out to invite us in.
and invite us in as equal partners, not as just token volunteers at the table. You know, I've volunteered for years, and in principle, I continue to volunteer, but today I will say, you know, I can afford to volunteer. But I would like to see other racialized people at the table who cannot afford to volunteer be compensated for their expertise at the table.
when everybody else around the table has a paid job to be there, to engage in systems change and policy change. Do you think attitudes are still prevalent that, you know, because you're a person of color and disabled, you're going to do, your work isn't going to be as good?
there's always assumptions and presumptions and discrimination.
And is it, I mean, are we doing better? Are we on the right trajectory in your mind?
I'm always hopeful. I'm the forever optimist. To me, every obstacle is an opportunity. And the reality is times are tough when it comes to othering people, excluding people, and times are just getting tougher. We have to be very deliberate in ensuring inclusion. In order to ensure inclusion, we have to be very deliberate.
In order to ensure inclusion, we have to be very deliberate and intentional. Otherwise, we will definitely exclude people and leave them behind. Yeah. I'm on social media a lot for work and just as something to do. I see a lot on Twitter in particular that, or sorry, X, people just pushing back against quote unquote this woke culture. And I...
That seems dangerous to me. Like, how do we combat that?
I honestly don't have an answer. I mean, you know, I did a webinar this week and I just said, you know, I'm Rabia and I'm coming from the traditional territories of blah, blah, blah. And today's the first day of Ramadan. So, you know, shout out to anybody who's fasting like me today. And somebody messaged back, you know, just saying, you know, there was no need to bring
identity politics into the space. I'm leaving this group because I, you know, like you use the word woke, right? That was exactly it. And then, but I'm sure it's probably okay if you said Happy Easter. Oh, of course it is.
You know, and that's the, you know, we got to sort of root out these sort of double standards in society and make sure everybody's included and allowed to say whatever they want. Well, I'm just, I'm just hoping that, you know, we're not going to, as times get tougher and, you know, there's always hope. We're hoping for the better. But right now times are tough. Given these tough times, I hope we don't see what's happening south of the border here.
you know, leveraging that despair for political gain through divisive politics. Yeah, and it's, you know, I spend time on X, you know, posting stuff for DDA and things. And it's just, if I was to believe everything on X, it would feel like the United States is such a divided country. And it's just...
cesspool down there. I hope that that's not really the truth and you're just getting a tiny fraction of people's opinions on X, but it's it gets ugly and it's it makes me concerned for people with any sort of issue of marginalization because it's it does not look hopeful on that platform. I got to tell you that. You know skyrocketing housing prices skyrocketing cost of you know, you know rent and
food is really impacting people. And when people face tough times, they fall into the trap of othering. They really fall into that trap. If somebody doesn't look like them, doesn't believe like them, doesn't live like them, they start blamely and discriminating.
and saying, you know, well, they're taking something away from me. And that's a very dangerous space to be in. And unfortunately, when we enter into the tough times, you know, democracy tends to deflect the reality of tough times by, you know, continuing that narrative of othering.
in through divisive politics. And so groups like Race and Disability Canada, groups like DDA, people like yourself, we just gotta keep banging on the door of these attitudes. We can't give up, we have to create opportunity for people to get to know each other, to learn, to share, to care about one another.
and recognize that if 27% of people in this country are disabled, the other 73% are their families and friends. Exactly. And that's 27% today. I mean, it's like...
Myself, I'm fairly able-bodied at the moment. I'm 52 years old. I've, you know, I've got some problems with my eyes and but age is definitely coming and I'm gonna need support at sometime like we all are. You know, so it's accepting that that's everybody is gonna experience this at some point in their life.
So we can't just keep those walls open. So what is the future for Race and Disability Canada? How long have you been around and where do you see this ultimately going? Well, Race and Disability Canada came forward as a concept in 2017. Dean support services evolved out of the Canadian Association of Muslims with Disabilities, which was around since 2004.
So Dean evolved in 2013 and then we brought forward Race and Disability Canada as an initiative of collaboration amongst several organizations that have been around for 20 to 30 years and have been doing work on the ground, but just haven't had capacity to grow. And so today,
as a funded initiative, we've been driving full force since the beginning of 2022, end of 2022, early 2023, and we hope to continue infiltrating the national landscape around disability to really spotlight the intersection of race and disability and encourage the change that we want to see for racialized people with disabilities.
Now you're currently operating on a grant from the federal government. Is that something that's going to be ongoing, do you hope, or is that something you have to reapply for every year? Well, it's a two-year grant. It comes to an end in November. We hope that there is, you know, opportunity for a subsequent phase that they haven't announced yet for another two to three years. And in that process, we hope that we're able to diversify opportunities to continue on.
Anything else to add today, Rabia? Well, like I said, every obstacle is an opportunity. I am the forever optimist. My cup is always half full and overflowing often. Good. So I believe that as Canadians, we have deep-rooted values that we all share of life, liberty, and security of the person, of justice.
of equity, of human rights. We just need to wholeheartedly embrace those values and champion them to build connections amongst each other and recognize that we all belong and that we all have an obligation to ensure truth, reconciliation and disability justice.
here and around the world for all Indigenous peoples and everyone else. We're all in this together. We're all in this together, absolutely.
Well, thank you very much. You have been listening to DDA's Encouraging Abilities podcast. With me today has been Rabia Kheder. She is founder of Race and Disability Canada, a relatively new organization to raise awareness of the intersection of race and disability and the problems and issues that come along with that. You can find more information about who they are and what they're about at racedisability.ca. Rabia, thank you so much for joining me today. It's been a pleasure talking to you. Thank you, Evan.
I'm your host, DBA Communications Manager Evan Kelly. Thanks for listening and see you next time.

Tuesday Mar 05, 2024

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.
CURIKO – Filling the Spaces in Between
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.
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.
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.
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.
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.
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.
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.
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?
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
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...
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
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?
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...
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.
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
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.
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.
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.
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.
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.
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.
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.
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.
came out, whereas Kiriko now has kind of taken this idea of experiences and opened it up.
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,
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
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.
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?
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
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.
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.
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.
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.
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.
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
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?
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
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.
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.
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.
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?
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.
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,
something he'd have to get there on his own. Do you have anything that helps facilitate that?
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
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.
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.
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
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...
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?
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.
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.
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
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
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
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.
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.
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...
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
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.
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
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?
for lack of a better word, more typically developed people, people who don't have cognitive disabilities. Yeah.
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,
kind of doing this workshop for Ignite.
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.
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
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
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
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.
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.
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.
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.
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.
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...
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
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.
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.
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.
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
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.
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.
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
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
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.
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.
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,
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
ASL. So it really like some of them are very much learning, learning based.
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
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
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.
Some that I'm interested in, yeah. Yeah. So how long, again, have you been involved with Curiko?
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.
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.
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...
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.
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.
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,
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
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...
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
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.
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...
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.
that they called the fetish experience.
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,
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?
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
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
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.
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.
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.
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.
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.
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.
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.
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.
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.
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
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.
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...
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
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.
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.
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.
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.
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,
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.
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.
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?
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,
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
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
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.
really is constantly reiterating and listening and learning. We've currently been in a process of kind of engaging a range of community members.
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.
Rodrigo, would you might be doing things that cost money and if so where do the funds come from?
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
curious ingredients. Curico sometimes.
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
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
as an immigrant, how does this system work in your life? Okay. I love it.
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.
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.
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.
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...
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.
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?
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.
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.
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.
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.
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
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?
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.
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.
So the research and the engagement, where it seems very connected and where research is also kind of connected.
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.
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.
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.
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.
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.
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
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.
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.

Friday Jan 26, 2024

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.
The Life That’s Chosen Me – From Russia With Love
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.
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.
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.
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.
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.
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?
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.
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.
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?
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.
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.
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?
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
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.
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?
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.
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.
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.
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...
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.
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.
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.
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.
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.
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
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.
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?
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.
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.
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?
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.
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.
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.
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.
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.
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
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.
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?
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.
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,
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...
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.
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...
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.
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.
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...
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.
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,
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...
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.
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.
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.
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
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.
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...
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.
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
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...
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.
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.
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?
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.
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.
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.
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...
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.
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.
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.
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?
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.
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,
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.
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...
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
family members who have disabilities who are not well off and where do they get the money?
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.
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.
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
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.
Thanks for listening, see you next time.

Monday Jan 08, 2024

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.  
Vital People – A Career in Caregiving at DDA
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.
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.
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?
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...
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.
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.
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,
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.
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.
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,
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.
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.
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...
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.
I feel safe to be here. Absolutely it is. Sometimes we take that for granted. You came from Germany to...
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.
moved to Germany. It's all because of my husband's job.
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
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.
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
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.
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...
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...
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...
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,
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.
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...
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?
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.
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?
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.
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...
self-advocacy and making sure that, you know, one of the big tenements of DDA is making sure our clients...
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?
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.
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.
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.
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.
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.
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.
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.
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,
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.
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
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
and we thought, let's think about it. And we talked to the clients and they were very eager to do.
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.
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.
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.
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.
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.
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.
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,
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
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.
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,
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.
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?
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.
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,
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...
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.
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.
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?
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.
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.
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.
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.
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?
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.
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
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?
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,
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
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...
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.
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.
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...
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?
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.
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...
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...
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...
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.
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.
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.

Friday Oct 13, 2023

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

Wednesday Sep 20, 2023

Wednesday Sep 20, 2023

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!
Healthy People – Longer Lives
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...
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.
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.
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?
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
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.
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.
So what's the feedback you get from working with this particular group?
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...
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?
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.
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.
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
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.
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.
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
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.
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.
Yeah, exactly. I think, you know, as, as we try to promote more independence within that community, I think physical activity is something.
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.
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?
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.
They're all so varying in ability that...
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
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
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.
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?
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.
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
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.
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
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.
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
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?
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.
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.
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.
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
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,
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?
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.
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?
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.
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.
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?
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?
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.
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
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,
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?
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.
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.
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.
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?
No, it's definitely more of a general education and even then I say it's a lot of like learning on the job.
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.
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.
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.
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.
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...
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.
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.
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.
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
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...
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.
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
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.
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.
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.
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
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.
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
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.
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.
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.
Thanks Ben, thanks for listening, see you next time.




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