Encouraging Abilities Podcast

Jamie Dri Success Story: Celebrating 15 Years With Jobs West

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

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

A chance meeting on 'X' has DDA chatting with Dr. Nathan Keates, in London, England about his Ph.D. thesis that postulates improv theatre has a benefit for autistic people when it comes to managing anxiety and more. 
 
TRANSCRIPT
 
Managing Anxiety in Autism: Going Full Improv with Dr. Nathan Keates
 
00:06
Welcome again to DDA's Encouraging Abilities podcast. I'm your host, DDA Communications Manager, Evan Kelly. In today's episode, we are talking about autistic people. And through the power of social media, I managed to contact Nathan Keates. They're a lecturer and early careers researcher in the field of critical autism studies and the University of Sunderland in London about their PhD thesis. Now this is kind of cool. It's the power of social media again. Through a tweet, I'm not sure if we can still.
 
00:36
call it that, through an X, I'm not sure now. So he had posted a picture of themselves proudly holding the copy of their PhD thesis. Now, the thesis completed at the University of Kent's called Going Full Autistic in Improv, Reduction in Anxiety and Other Benefits. And that's exactly what it says. Improv as an improv comedy and how that might positively affect anxiety and other autistic valued benefits.
 
01:05
not only is Nathan a scholar, but they also previously worked in theatre. So Nathan, thank you again for taking the time to join me today from across the pond. That's alright, you're very much welcome. I enjoy talking about this. Now that's great. So just right off the top here, tell me a little bit about yourself. Well, as you said, I'm a lecturer at the University of Sunderland in London.
 
01:32
That's in health and social care. As you've said, my research and such is in critical autism studies and I have previously taught that at the University of Kent where I was doing my PhD. Previous to that, I've got a background in theatre so I have taught improv for quite some time, probably going on 17 years. So the PhD was basically trying to stitch my life together.
 
02:00
in an interesting way. So in 2007 I went to the United States of America and I talked some improv in a summer camp there and that was a wonderful experience, so wonderful that I thought I had to do more with it. And it took me a decade or so to look back to academia to start stitching things together but between that period I was practically doing stuff.
 
02:30
So that's a little about me. If that can be classified as little, I don't know. Theater, is that your first love before you got into the higher learning about autistic people and stuff? Yes, for sure. My aspiration as a child was to get into acting, and I did that until
 
02:58
Well, in part, I'm still doing it, but it's no longer my profession. Just because the way life turns, I found academia and I actually really enjoy research and I really enjoy teaching. And these are what I can do in a higher education institution. And so you got a PhD now, so we can call you a Doctor of Philosophy, which is quite cool.
 
03:27
Yes. You would have started, you got your first degree, then probably a master's and then a PhD. How long has this taken you to get this far? Very long because I didn't have that inclination to be in academia. I started in university in 2005, and then I
 
03:56
Then I found out I like teaching, so I then went back to university and I did a PGCE, so that's qualification for teaching, and then a few years later than that I then started thinking about how I could piece elements of my life together and I went back to university for masters. Then the idea of the masters was to go to the PhD. I did take a year break between the
 
04:25
but that was just to make sure the PhD was set up and I could actually get what I wanted. Cause trying to get all the paperwork done as well as finish the master's is a little difficult. Yeah, you know, my mom always said that a PhD means piled higher and deeper. So how long did that aspect take you? Oh, four years, four years of doing the PhD. I believe that is accurate. It's probably nearing five years in reality. Yeah, nearing five years, but.
 
04:55
I'll say four years because it sounds nicer, cleaner. That's impressive. What is your interest in autistic or neurodivergent people then? As I said, I probably didn't know anything about autistic or neurodivergent people before going to that summer camp. At the point where that happened, I started reading around with it.
 
05:24
I'd better find out about this. Just so happened that after that returning back to, because that was during my undergrad times, going to that summer camp, I went back to university and realized or found out that a lot of my friends were actually autistic and neurodivergent. And even retrospectively now looking back at who I was hanging around with and enjoyed spending time
 
05:54
probably also neurodivergent as well. Not that they didn't disclose anything, but just understanding from where I am now is very likely. So that's how that began. And then just getting along really well with autistic and neurodivergent people means that personal interest is sustained throughout the years and then academically.
 
06:21
It's just a great topic to ensure there's some development, positive development, in a way that's going to actually be helpful for autistic and neurodividend people. So my professional interest there is just because I do have that aspiration to try and improve people's lives, you know? Yeah, I mean, that's precisely what we do here at the
 
06:50
Many clients who do certainly identify as autistic here, but we you know We sort of run the gamut from developmental disabilities from fetal alcohol spectrum disorder down syndrome The whole thing but your your your thesis is focused on the autistic community, correct? Yes. Yes it is. Yes and Why did you choose yeah, we talked about it in like again the title is going full autistic and improv. Why did you choose?
 
07:20
in improvisation as a basis for your study? Um, yeah, as I say, it was about pinning things together. So having taught improv and having taught it to autistic, that summer school was, summer camp was kids, predominantly anyway. So having, having that experience and trying to pin things together, I went into my masters, didn't know what I could do. So actually my master's research was
 
07:49
autistic comedians and looking at comedy and then I moved from that onwards to improv. So it really was just pinning things together and you have to be interested in your PhD in order to complete it. So coming from that interest, by all means in academia we talk about conflict of interest, you could suggest there is because I have taught it but...
 
08:18
there was a cutoff where I really have no interest in financially gaining from autistic people engaging in improv. Yeah, but nonetheless, that has its own debate, but we don't need to talk about that on your podcast. And so you mentioned that your study group, I guess, wasn't that big. And so did you take me through that process of sort of studying people?
 
08:47
with autism within the improv environment? So yes, the second part of my thesis looked at autistic people engaging in improv and such, and the whole process was quite a big process. I had to start with understanding what was already out there, what literature existed, then I wanted to understand, well, there's not even a lot
 
09:17
whether the past literature around that actually fits to the global community of improvisers. And then from there I started looking at autistic improvisers' experiences, non-autistic improvisers' experiences, and then eventually get into that point where I could set up classes for autistic people and then explore what that could be. So I had 17 people in that class.
 
09:46
second part of the thesis where I looked at that study in various ways. So I was looking at how to implement the classes in an appropriate manner, so conducting some research where I look at if the classes were suitable, if not adapting it, and that was cyclical when it was constantly going through these phases with different groups. The groups themselves are quite small because Covid
 
10:16
because it was necessary for people's comfort as well. We were online, so there's various reasons why each group was small, but I had multiple groups, so that was happening. I also looked at the benefits in general, and then I also measured and asked about anxiety. So those are the three sections of that last study, which is quite hefty, as you might be able to tell. I hope you can tell.
 
10:43
It's like when you're measuring anxiety, I mean, that seems to be a big part of your thesis. Do autistic people do better with anxiety in improv? How did you measure that anxiety? I was interested in just understanding generally about anxiety. I used a measure around state trait anxiety, so the general state someone has in the moment. Is that reducing?
 
11:12
maybe even if someone's traits, their general anxiety levels, would that decrease? The answer is no, that's the one thing that didn't happen, but I also looked at social anxiety and there's a measure called Leibowitz social anxiety scale, I used that looking at social anxiety and that did seem to reduce for within that study. So we can suggest that for some autistic people social anxiety will decrease.
 
11:41
But I did find this social avoidance won't decrease, and there's lots of reasons we can explain that one, but just hypothesizing around why that could be. And I also looked at uncertainty, and we don't want to talk about uncertainty in a way that is a misnomer. Everyone experiences uncertainty. What we want to look at is if certain things can reduce uncertainty for everyone.
 
12:10
and improv seemingly can do for the general population because it has been done by a wonderful academic over I think in the States USA called Dr Peter Pelsman. He works, he does a lot of work on improv and on anxiety and uncertainty. So he's done that and I used this concept of uncertainty to see if that would reduce and it did seem to as well. So these were the things I was interested in but I also wanted to understand exactly
 
12:39
what was working, why it wasn't working, you know, just generally understanding qualitatively about it as well, because we can measure these things, but sometimes measures aren't really gonna capture what we need to, because we start making lots of assumptions when we start measuring. So I asked the qualitative stuff as well. And with that, we have to acknowledge the fact that the social world is not constructed for autistic people nor neurodivergent people. That is obviously-
 
13:07
obviously going to create issues, so we have to understand that anxiety could rise when they're not in improv and when they are in improv maybe it goes down, but the first class is always going to be anxiety-provoking, so that's going to shoot sky high, and if things don't quite go quite right in the class, anxiety is going to spike as well. But in general, anxiety seemed to be quite low qualitatively during the classes, and I only really looked at pre-post for the measurements.
 
13:37
So that was true as well. And there's always gonna be other aspects that create or decrease anxiety, including those outside aspects. Even just, everyone might experience, if you're in college in the States, then that could mean, oh, you're worrying about your workload, or maybe if you've got stuff in the job and you're worried about...
 
14:05
something in your job that was going to increase anxiety anyway. So, you know, we can't, we can't just reduce down, reduces down to a yes, no. Well, yeah, exactly. It seems like, you know, for lack of a better term, bit of a spectrum that you're trying to try to cover there. So, but how many, you know, when we're talking about classes, improv classes, how many would you have done with these 17 participants in order to generate,
 
14:34
some of the answers you're looking for. So this is actually quite a let's say cool thing with this. It was COVID times, it was online, so there's limited, there's limitations about what I could do. I only ran four online classes and I and during COVID time I still seem to manage to find a reduction in social anxiety and uncertainty. I think that's pretty impressive considering it's not a lot of time. But so I was quite quite
 
15:03
I wouldn't say surprise, but I was quite happy to find such a result. I don't want to say I was going to say clear as though it's not clear necessarily, but you know, it's it's there, it's significant. And with all that qualitative data, it was it was quite there was some some clarity to I suppose. I don't want to oversell some. Now, did you obviously this was just focused on
 
15:32
autistic people? Did you look at any other sort of neurodiverse people with different disabilities, or just autism? So in another study that I did in the thesis, I looked at autistic improvisers, I looked at neurodivergent improvisers that weren't autistic, and I looked at neurotypical improvisers. So in this one, I did look at neurodivergent improvisers and neurodivergent people.
 
16:01
But I didn't measure anything. Those were interviews I conducted. And they had experience of improv. So it's just understanding their experience of participating in improv in whatever capacity they did. You talked about reducing anxiety, but what other benefits did you notice for autistic people involved in improv? So other benefits included there's a way of looking at quality of life. So qualitatively
 
16:31
looking at quality of life, we found that there could be aspects of emotional well-being that occur, there could be aspects of social relations that occur, and such things like this. For all improvisers, going back to my first survey that I conducted, we can tell that there are some social developments and communication developments, but we don't want to apply this to autistic people, because then we're going to lead down a track of
 
16:59
let's do social skills training which is really really inappropriate. Never do that. Let's go and force autistic people to mask. That's not appropriate, it's not good. We want to enable autistic people to have their own autistic sociality which does occur, it does exist. There's various research that says that. And in improv it's a social art so I preface what I'm
 
17:29
Improv can provide a space where you can develop socially and develop your communication and that occurs for no matter what neuro type you have. So that's another benefit that you can have. Improv can be like a well it does have a community so you could find a community of people that you want to engage with as well so that's something else that.
 
17:56
that can exist and that was threaded through the whole of my thesis because it happened with the first survey and even at the end I was talking about autistic space and how the autistic learners in that class enjoy being with one another so that was already creating a form of community there and some of which did go on after the class to continue doing stuff together.
 
18:26
Now, within those classes, I mean, I get that you were sort of focused on the autistic people. Were there neurotypical people involved in the class at the same time? No, simply no, no, that would also damage the autistic space. It was literally stated in a focus group in those classes that if there was one autistic person there, that would ruin it all. Like if we were actually in person in a community hall and the other half of the
 
18:56
their attention, the autistic participants attention would not be on their class, on the improv, but the other people in the room. And also, even if it's with the online class, if there was a neurotypical person there, they would be concerned or worried about whether they would be paired with them in a game. I was putting people in breakout rooms during this process, so they'd be worried that they would be paired with the neurotypical entering a breakout room. So
 
19:26
So it is important to understand that it can be easier for autistic people and neurodivergent people probably to be paired with other autistic or neurodivergent people. Many of the participants did state that it didn't mean need to be an autistic person necessarily because neurodivergent people can be quite welcoming and such and quite accommodating anyway, so neurodivergent identity is quite adequate according to what I was told.
 
19:56
Now, the group you're, I guess they would be qualified as a high functioning autistic? We don't use that. Just because that creates distinctions between people that are really inappropriate and just inaccurate, essentially, it creates stigmatization of people. You're high functional, you're low functioning.
 
20:25
it doesn't work at all. I got a research around this as well. I conducted a survey fairly recently around the viewpoints of autistic people around language, and it was a very small amount of people that were okay with function labels. Most people were, most autistic people were not, and even within those people that did find it acceptable to use function labels, there was a little bit of difficulty understanding exactly how it was because
 
20:54
Some of the points within it suggested that, well, I don't use it for myself, but I'd use it for other people. Well, it doesn't quite match fully. I can't talk a lot about this just because it's not published, but that's a quick overview around that. Yeah, I agree. The whole language about that seems to be evolving a little bit. I've been involved with Developmental Disabilities Association for about three and a half, four years, and it's been very eye-opening for me.
 
21:24
You know, you sent back some edits to me before we engage in this conversation. You want autistic people, whereas by and large, the association here tries to put people first, like person with Down syndrome, person with autism, where it's the autistic community, as you've sort of shown me, it's the other way around. Yes, yes it is. And so, yes, thank you for that.
 
21:53
bit of education. Now, what sort of limitations did you find in your research, or perhaps were there some instances where improv sort of didn't do what you hoped it would? Yeah, there are difficulties with coming out with solid concrete conclusions, which I've tried to be careful with during this as well, because I can only say improv may work.
 
22:22
for some autistic people. And that's because inside the class, I also have people that just didn't get on with it. I had someone that really wanted to enjoy it, but just struggled too much to engage with improv and its natural needs, requirements. And someone else just didn't like acting out basically. So there's no value to them to engage in improv when the whole...
 
22:50
concept of it is to act out sketches and act out stories. So in fact they went back to something where they could improvise in a way that was better for them and they through the process of engaging in the research, my research, they actually returned to something they previously done where they could engage with improv but in a more suitable way for them. So there's some limitations there. Improv is not a panacea which is a quote from another
 
23:21
Now, in terms of the improv itself, were you sort of leading towards, when you talk about sketches, are you leading towards serious drama type things or more comedy? Was there an element that was a better vehicle, if you will? The late, great Keith Johnstone would say that comedy will become...
 
23:46
more easily and first if you want to be dramatic and serious that takes a lot of effort you need to develop as an actor to get there. So having that fun, having and sharing that fun is naturally going to create comedy more than create something serious. There are going to be people that enjoy more serious presentations of the scenes they want to do and that's okay. It just means that people
 
24:15
need to be on board with exactly what they're co-creating. But in general, you're going to lead towards the funny, certainly to begin with. Now, in terms of your classes online would have been perhaps a little bit more difficult in some ways in terms of movement. Was it more about the speech and what was coming out in terms of
 
24:42
ideas or movement was involved in some way? This was a concern I had before I started the study. I wasn't so keen on putting it online because of this thing you're talking about. You need the space, you need that physical interaction, and it becomes very much more difficult. During that time, I was also providing classes. In the end, I ended up providing classes online
 
25:12
and what I did was I delivered film acting for improvisers in a way because then you you are that's what you're doing then we have this aspect of it as well so you've got a frame around you you can improvise within that frame you can still move you can still do physical things and for the classes that's all that was required delivering some more something more means that
 
25:40
we get lots of other film aspects and cinematography and such that can happen. But that's not why I was delivering in the research. Now you spent a lot of time or sometime at least in the US. Can you tell me about your experiences there? Yes. So I assume you're referring to the summer camp again. But I have been around the US in other occasions as well. So part of
 
26:08
of my enjoyment of improv is that I did go over and train and I went to Hollywood which is very nice. Yeah it was nice to train over there so that experience was really useful, it really shaped how we can look at improv more broadly and I think when doing that you could then see how broadly you can teach or apply improv in live.
 
26:38
for autistic people maybe that also helps to be able to understand the form. In my VIVA, it was questioned whether the fact that because of COVID I was delivering the teaching, which was not the original plan. They questioned me on this matter, like did that impact the research? And actually it did because I have a lot of experience with autistic people and have a lot of experience with improv, these things.
 
27:07
coincided in a way that's actually really conducive to the outcome that was being sought. I originally wanted to bring in a really experienced improv teacher and I wanted an autistic teaching assistant which I ended up having in my study anyway, but originally the plan was to have them both there at the beginning. So that change matters and I think my experiences in the US really helped.
 
27:35
in the way that I could think about the pedagogy being delivered and how that could be framed. And it was, there's a vast amount of time between my first experience in the United States and now and obviously that bit in between. And from going from that initial experience of delivering improv for predominantly autistic kids, that that
 
28:05
Progress was quite an interesting one because obviously, it was only really beginning back then, an improv, let alone anything else. So that's the insight I think I can deliver for that question. That's my experiences there. How as a society can we do better for the autistic community? In many, many ways. In many ways. We have to, I believe, we have to stop
 
28:35
creating additional labels that aren't helpful. If we want to meet needs, we have to meet individual needs. We have to listen to autistic people and neurodivergent people, hear their voices and actually do what's required, do what's been said. So that means removing any of the norms that are supposed to exist because why should they exist? There are reasons academically.
 
29:05
but it doesn't work. It doesn't work. So if it's not working, then we need to change fundamentally. So we listen to autistic people, reduce the norms that exist, enable autistic people to engage with. Such things as improv without it being for a reason other than out of interest. That's another thing. Like neurotypical people can go and do improv. It doesn't have to improve their.
 
29:31
communication. They can just go and do it for fun and then eventually they will, as per my interview study, find out actually there's lots of value here and that's different to that. So that's probably my quick to sense, I should say sense, shouldn't I, on that one. Now what does the future hold for you? Are you going to move on in your career as a lecturer or are there other areas of autistic study you'd like to embark on?
 
29:59
Yeah, so at the moment I'm looking at higher education and inclusive pedagogy. I'm interested in mental health and well being obviously, so I'm going to keep with that topic as well. And there's endless endless supply of things I could do. I'm beginning. I'm an early careers research now and early academic, so there's so much I can do and so much that I would like to do isn't.
 
30:28
just about being realistic to these goals. What should I do? But predominantly I'm gonna stick with working with autistic people and that's gonna be the starting point. Well, that sounds really great. I think we've run out a little bit out of time. So you have been listening to DDA's Encouraging Abilities podcast. Our guest today has been Nathan Keates all the way from London, England.
 
30:57
Nathan is a lecturer at the University of Sunderland in London and an expert on how theater and improv can be beneficial for some autistic people. Nathan, thanks again for speaking with me today. Thank you very much. I thoroughly enjoyed it. Thanks for listening. See you next time.
 

Dementia and Alzheimer’s - When Caregiving is Vital

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

Looking to the Future of Caregiving: Artifical Intelligence

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

Making Travel Accessible to the Neurodivergent Community

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

Sirota’s Alchymy: A Doorway to inclusion

A local man is nothing short of a pioneer when it comes to inclusion. Master Michael Sirota has been teaching Taekwondo and Hapkido to the disability community for over 20 years and feels there is nothing they can't accomplish through the practice of martial arts.
 
TRANSCRIPT
Sirota’s Alchymy: A Doorway to Inclusion
 
00:05
We are back with DDA's Encouraging Abilities podcast. I am your host, DDA Communications Manager, Evan Kelly. Today is part two of our Accessible Sports series, and today we're joined by Master Michael Sirota. He owns and operates Sirota's Alchemy, which trains students in the martial arts styles of taekwondo and hapkido. I think I'm saying hapkido correctly. They operate in Richmond and in Steveston Village and Victoria Drive in Vancouver.
 
00:32
Straight from his website, Master Sirota began his journey in martial arts in 1983. Since those humble beginnings, he has immersed himself fully as a martial arts practitioner, athlete, instructor, coach, global pioneer of therapeutic martial arts, and facilitator of global empowerment. He is, but not limited to, an eighth degree black belt in taekwondo, a fifth degree black belt in hapkido, a master instructor, sorry, a master instructor.
 
01:01
certification for both styles and for our particular audience He's got his instructor license in International Disabled Self-Defense Association and International Disabled Self-Defense Association Black Belt now He's received many awards for his efforts in the community and with the Paralympics and the autism community You can find that list on his website website at Sirotasalchemy.com I'll spell that for you. It's S I R O T A S A
 
01:30
LCHYMY.com. Master Sirota, it's great having you here today and thank you for coming into the studio. Oh, it's my pleasure. Thank you. Now tell me a little bit about yourself. Why did you get into martial arts back in the early 80s? Well, I was a child and like most kids...
 
01:48
I had low self-esteem and no confidence, so it was an opportunity for me to, or for my parents to see that I needed something. So I started with martial arts at that time. I really didn't know anything about it. And I just kept going. I never stopped. You just fell in love with it? Yeah, absolutely. And was that taekwondo? It was taekwondo, yes. And so what's the difference between taekwondo and hapkido? Well there's thousands of different martial art systems and styles.
 
02:17
it uh... the marshals is just a little general umbrella for what the split very specific styles arm
 
02:25
You know, I always tell the parents and the students that come to our schools that it's not so much important the style of martial arts, but the school and the philosophy and the methodologies and what they teach and what, if that's in line with your own philosophy and what you want for your child or for yourself. But generally speaking, I would say it's the most popular martial art in the world in terms of number of participants. It's an Olympic sport. It's the most globalized martial art as well. There's a lot of kicking, punching. It's more aerobic.
 
02:54
more skill development, coordination, physical fitness. Hapkido is more of a self-defense martial art. So utilizing more joint knocks, joint manipulation. So we teach it from a defensive point of view where someone, let's say, grabs you or attacks you, how to get away, and then necessarily with kicking and punching. Now, you've got two locations. So how many students are you servicing these days? Right now, between seven to 800 kids or students. Oh, wow.
 
03:22
Wow, that's a lot. Now, COVID must have.
 
03:26
and it hurt you when that started and people stopped going out. Are things sort of back to normal for you guys? Yeah, we're back in full swing. And COVID, of course, it was a... We all had to adjust and adapt and how they say, pivot. And we pivoted instantaneously. So I remember we were... The news came out that we had to shut down. And I think it was like a Tuesday or Wednesday. And then the following day, I had a staff meeting.
 
03:56
we were doing all classes of zoom. Oh wow. And we didn't, you know, that time I had no idea what zoom is and you know and we had to like, you know, I had to go and buy computer screens and you know laptops and everything like that and we just uh you know had to figure out how to use the system and uh you know within two three days we were offering 100 virtual classes. Now do you still offer virtual classes for those people who have a difficult time getting? Uh we don't. Over the months and years we gradually
 
04:26
the virtual classes, it just wasn't any interest. And yeah, but at one point in time, everything was virtual. But right now it's all in person. Okay. So it's clear on your website that working with the disabled community is high on your list of priorities. Why is that?
 
04:44
I believe that's what I'm here to do, that's my path. In a way, when I was running the schools, when I was much younger, I never really thought about, or actually I didn't even know anything about the disability community or what is autism or what's spinal cord injuries, nothing like that. I had...
 
05:09
This was in the 90s, we had some kids in our classes that I felt that they had some challenges and they needed extra support, but I didn't know what kind of support and then I was really oblivious to all of that. Never had any exposure. And, but I knew that martial arts is really beneficial for them. And, but the environment that they were at in, you know, there were too many kids, they needed different type of support. So we decided, I decided to start, you know, a little class for them
 
05:39
get more individualized support and more adaptive to their needs and then from there it just grew exponentially. So how many, is there a certain amount of percentage you would say of your students that are in the disability community? We are at full capacity for quite a few years. We have a wait list for our private lessons for the last, I would say five years plus.
 
06:01
Guessing we'll probably work with about 200 to 250 individuals with various diagnoses. Oh wow, that's actually a fairly significant number. I mean I guess if there's a waitlist as a business owner, that's a good problem to have in a sense. Yes, now the challenge is having enough staff to accommodate the needs. Right, right, of course. Now one of your many accolades, and if you go onto his website, you see all these awards and accolades that Master Sirota has...
 
06:31
has received one is para taekwondo pioneer can you explain what that award is and how you want to come yet so it uh... i don't focus too much on the awards uh... no i appreciate it and i'm grateful for that uh... but years ago i always believe that the marshall artists should be for all
 
06:50
And so I had a vision or a dream that I worked towards manifesting, which was globalizing martial arts for everyone. So I decided to go global and discuss and bring it to the forefront of the, with the World Tag Window Federation at that time and see how we can bring Paratype Window to the Paralympic Games. So I've, at that time, spent a lot of time traveling
 
07:20
over the world bringing my expertise and passion to everyone and try to get the the international support community open their eyes and minds and hearts to people with various challenges and you know
 
07:38
special abilities. And so, Pera Taekwondo is now in the Paralympics? It is, yes. Is that the only martial art in Paralympics right now? No, they have judo as well for people who are visual impaired. Okay, that's interesting. Now, you talk a lot about, I mean, the list of...
 
08:00
services that you provide to to the cognitively cognitive impairment is actually quite long like you'd deal with a lot of different conditions now what is your connection to the world autism festival or the autistic community in general well um...
 
08:14
Most of our students in our therapeutic martial arts program are autistic. I would say maybe 80, 90 percent or maybe even higher. That wasn't what we went after, that demographic. There's just so many more individuals with autism compared to cerebral palsy or down syndrome or spinal cord injury. So we do provide programs for that demographic just because there's more kids.
 
08:44
We're truly, I believe we're all inclusive. We will provide programs for everyone.
 
08:50
So to us, to me personally, it doesn't matter if it's an intellectual impairment or a physical or a sensory, we welcome everyone. So martial arts in your mind is the great leveler of the playing field. Yes, I believe that if it's done properly it will greatly benefit on the physical level, emotionally, develop the self-control, the impulse control, all that kind of stuff.
 
09:20
you've got some high functioning and some is not as high functioning. Is there a specific process that you sort of use for autism or is it really more of a case by case basis?
 
09:32
Yeah, so how it works is, let's say if a family has a child with autism or any other diagnosis, the first step is that we do an informal assessment. So the family comes in, or if it's an adult, an adult will come in, and then we meet him or her, meet the family, just figure out what's the best environment for the student. We offer private lessons, we have group lessons, we have group lessons for younger kids, for older youth, adults.
 
10:02
we kind of determine what's the best path for the child. If they need one-on-one support, then we recommend the private lessons. If they're ready for group integration, then we will recommend that. Now, do you see that as, I mean...
 
10:21
You know, in terms of treating kids with autism, there's lots of different therapies. I mean, we've talked about music therapy and one-on-one therapy. Do you find that martial arts really helps them sort of come out from under the shadow of autism? I believe so. Now I can only speak on what we do. If it's done properly, where we place the emphasis on life skills and place emphasis
 
10:50
and create an individualized approach where it's adaptive to the child or the student, where I strongly believe that martial arts has to be yielding, blending, and adaptive to the student's needs and where they're at their stage of development. And that's what we promote in our school and that's what we implement in our schools. So if we are teaching...
 
11:12
not that where you know it's a mold and everyone has to fit into the mold and yeah it might not be suitable uh... but if we are there's no really mold and we adapt to it uh... it can be extremely beneficial
 
11:26
Obviously, we're not just talking about people with autism. I assume there's other conditions like Down syndrome or CP or something like that. How do they do in your program? They do great. Full stop. You're awesome. They just have...
 
11:45
I truly believe everyone can do it. So I don't put any restrictions. I don't work, and our instructors don't work within any, in the way parameters are within the box. So whatever we believe is applicable, it can help the student, we will apply it.
 
12:02
Fantastic. Now, what is some of the response you get from parents of this particular community? I believe it's all very positive. We have been doing this for, I'd say, about 24 years now, specializing in the special needs programs. We have a fairly large population of kids and youth and adults.
 
12:28
you know i think the best is to every every family will have their own experiences and uh... i wanna you know talk on their behalf but i i do believe it's all very benevolent now what are uh... some of the personal experiences we've seen in outcomes in students with developmental disabilities can you can you identify like one sort of uh... student without naming names of course who like
 
12:50
became, you know, overcame? Generally, well, we have so many positive experiences, but I think that the main thing is the sense of accomplishment, self-confidence, self-esteem, that our facility provides an atmosphere where they can all shine. And that's what we really, that's what I wanna see in the long run, where they become more independent, they become, you know, they feel proud of who they are, they are, you know,
 
13:20
trying to in a way change them we're trying to like okay you have all these skill sets that we let's let's help you become you know better at it and overcome your whatever your imbalances are. Yeah and for your typically developed students are they embracing the the sense of inclusion as well? I feel so we like we do have separate classes depending on the you know we have look for young kids for older like you know beginners intermediate advanced that we
 
13:50
So we have different programs, but when we have events such as rank testings or tournaments or any kind of events, it's all inclusive. So everyone is included. So if you come to our school, you might see someone in a wheelchair, you might see someone with a walking cane, we'll see a lot of kids with autism. That's just who we are. Now, and you mentioned wheelchair, obviously you're going to be a whole other sort of adapted program.
 
14:19
for that. Correct. So we, you know, if they are, if they can't walk, let's say spinal cord injury, so then we will create a program for them where they're utilizing more of their upper body. Oh, I see. That sounds good. Now your website, your website has a page dedicated to disability training, even sightless training. Can you tell me a little bit about that program? Yeah, so,
 
14:46
Many years ago I was, I wanted to expand and I felt, okay, let's...
 
14:52
let's bring the visually impaired community into martial arts, because I feel it could be very beneficial from the self-defense point of view, you know, and just, you know, just martial arts is for all philosophy. So I've created a program where I call it sightless self-defense, where it's based on, not sight, but it's, you know, a tactile, so there, it's more hub-keto based, so there, you know, more sensory, to, you know, people grabbing and, you know, working on self-defense escapes. So, but to me, it's,
 
15:22
If it's adaptive, people with facial impairment can absolutely do martial arts. Now, hap-ki-do, is that what like, I may have asked you this earlier, but I can't quite remember. Now, what's the difference between tai-kuang-do and hap-ki-do? So it's more...
 
15:38
self-defense oriented. So the individuals that say, like we offer, the Sightless Self-Defense Program for, you know, we have in the past where, let's say, a group of adults or we go to another organization or partner with another organization where we, you know, I will go there and actually run the classes. So it's more, like we'll do the striking and the kicking, but, you know, we focus more on the self-defense of where, you know, someone, let's say, grabbing you and how to get away, or someone's grabbing your wrist or grabbing your shirt or things like that.
 
16:08
Mm-hmm, I said that that's what have key dose or the more focus. That's what we teach us. Okay, okay so Use your judge your Jojo's getting they get involved in tournaments We at the moment we focus primarily on like we offer like in-house tournaments like for our students where we'll have our own our own, you know events we in the past we have taken our students to
 
16:36
provincial, national, and even competed internationally as well. And even in the past we would bring some of our paratagmine athletes to international events as well. And so everybody is included in that? Absolutely. No issues whatsoever? No.
 
16:56
Now, you offer one-on-one training for students who may need that assistance. I hate to ask the question, is that more expensive? It is, yes. And what does that cost? So the private lessons, depending on who the instructor is, I would say it's about $95 to $100 per session. And each session is 50 minutes. 50 minutes a session. Seems kind of standard for anything private. That's good.
 
17:26
ages of 6 to 19, then they could use the autism funding for our programs as well. Oh, that's a good point to make. I mean, that funding is through, I guess, autism? It's through the ministry, the provincial government. Is autism the only one that's supported, or can anybody with a disability? At the moment, yes. And I know there's been some talks, and I truly believe it should be for everyone who needs the support.
 
17:56
for now hopefully things will change and there has been some talk about changes but I'm not involved in the political side so I'm not You're just here to teach martial arts Yeah and make a positive difference in the world through martial arts Absolutely now you've got two locations which one opened first? The Richmond one The Richmond one, okay and how long has that been open? So in Richmond we've been since the early 90s
 
18:26
redevelopments in the city and the Vancouver one, we've been at the same location for about, I'd say about 12 years now, maybe even more. Any thoughts about expanding even to more? I would love to, you know that's always, or has been on my mind for quite some time. It's just, my challenge is staffing, you know it takes a lot of time, a long time to develop the positive staff and
 
18:55
experienced staff and so that's the challenge. Well that must be a greater challenge. I mean you're not just hiring anyone off the street. They have to be an expert of martial arts in order to teach it, I would think. They have to have the martial arts skills plus they have to have the, you know, it's very personality based, what we do, so they have to be able to connect with the children, with the students, they have to be able to inspire them.
 
19:17
and motivate them and at the same time provide the discipline, the structure associated. So there's a lot of skill sets involved to be, I feel, a good instructor. Now speaking of training, did you receive any training in teaching people with autism or other disabilities or anything specific? So I'm self-taught.
 
19:40
So like I said earlier, in the early 90s, we had some kids with, I assume, with special needs. I didn't even know what autism was or what. I had like absolutely zero knowledge. And I started doing my own research and this is like before Google or anything like that. So it was like going to like chapters. You had to go to a library? Or libraries. Yeah. There were such things as libraries. And just doing my own research. And then.
 
20:05
and then start and go from there. And then like you mentioned with the visually impaired or people with spinal cord injuries who are in wheelchairs, you know, I would, when I decide to have a program for a visually impaired, I would blindfold myself and figure out what works, what doesn't, and then wheelchair send things in the chair and like decide, you know, figure out how we can teach. And then...
 
20:26
experiment on my own to develop the programs. That's pretty unbelievable. Now when it comes to your own staff, do you provide training for them? Yes, so we do a lot of internal
 
20:41
training. We also, you know, I have traveled to various countries and I have taught other and certified other instructors, other martial arts instructors, on how to teach like therapeutic martial arts and paratheque window. You know, we have a, we even offer an online certification program. We probably have, I'd say, people from about 30 plus countries that have taken our courses and are teaching our philosophies and methodologies. So we,
 
21:11
other than what we offer.
 
21:13
So you're pretty unique in this field around the world. Yes, correct. That's unbelievable. I'm actually quite surprised, pleasantly surprised. And so how many countries have you been working with and where do you go to teach? So pre-COVID, I traveled quite a bit. And then when I was working on the international level, you know, bringing globalizing paratech window, I went to quite a few different places. And then I kind of moved away from that and then started focusing more on our schools
 
21:43
our staff, our students. But I, through martial arts, through Taekwondo, I'm guessing it's been through to 20, 30, maybe 30 countries, maybe more. And spreading the information on therapeutic martial arts. Teaching seminars and presenting anything from, you know, a 10 minute talk to,
 
22:07
I typically would have done 16 hour courses, like a Saturday, Sunday, 8 hours each day. Wow. I mean, I know you said you're not a big awards guy, but I think there should be some more awards in your future. How about the Order of BC or the Governor General's Award? This is all amazing stuff. So how do people get in touch with you?
 
22:29
So we have the two schools where social media were there. Like you said, our website, we have sarosalkimi.com. We also have same websites, martial arts for all, like with the number four. So it's just a little bit easier for people to find it. So if they type in martial arts number for all.com, that's also, I'll go to our website. I wasn't aware of that. That's good, good. Because most people have a hard time spelling alchemy and stuff like that.
 
22:59
our cirrhosis. Is there anything else that you wanted to discuss that you think is important that I've missed or anything? Well, I greatly appreciate this opportunity to share what we do at the Alchemy, our passion, our vision, and we continue to.
 
23:15
want to provide more programs and more services for our inclusive community. So it's a great honour and I feel that there's still a lot more work to be done to truly make these positive changes in our community and our global community. Well it sounds like martial arts is an easy way to do that. Everything you've told me just sounds absolutely amazing.
 
23:42
so i think that covers it uh... you have been listening to dvds encouraging abilities podcast our guest has been master michael Sirota taekwondo and hapkido instructor and owner of sorority alchemy and we've been talking about martial arts programs they offer for people with physical and developmental disabilities it's extremely extensive and as we've learned sort of groundbreaking around the world which is amazing you can check out their website uh... sororities alchemy dot com as well as martial arts
 
24:13
Master Michael Sherwood, thanks again for being here. My pleasure. Thank you for having me here. I am DDA communications manager Evan Kelly Thanks for tuning in. See you next time
 

Connecting on the ice and pitch with Sportability BC

Adaptive sports are expanding in B.C. In this podcast, we connect with Jade Werger from Sportability BC and what they are doing to improve the lives of people with disabilities. 
 
TRANSCRIPT
Connecting on the Ice and Pitch with SportAbility BC
 
00:06
Hello and welcome to DDA's Encouraging Abilities podcast. I am your host, Evan Kelly, communications manager for Developmental Disabilities Association. Now we've been doing a lot of podcasts on inclusion and accessibility, so today my guest is Jade Werger with SportAbility. This is the first in a series of accessible sports-related podcasts. Now I met Jade at DDA's Leisure Fair in Vancouver a couple of weeks ago, and we had finally got the fair up and running after...
 
00:31
A couple years due to COVID of course was shut down and there were roughly 25 organizations taking part. It was great to see how many options the people with disabilities have now to get moving and staying healthy. All sorts of adaptive sports and inclusive programs are happening in BC these days. Sportability is one of those organizations. Now Jade joined Sportability team in February 2017 as the sport development coordinator. She graduated from Castle...
 
01:01
University in 2013 with a BA in Health Psychology and a minor in Fitness and Sport Science. While attending Castleton, Jade was a member of the Women's Varsity Hockey Team as she holds a master's degree in Kinesiology from UBC where her thesis focused on hockey official penalty decision making. So thanks for joining me today Jade. Yeah thanks for having me Evan. Now this is really curious to me. I grew up playing hockey so I, your thesis is interesting.
 
01:31
hockey penalty decision-making. Can you tell me a bit about that thesis? It sounds interesting. Yeah, so, so kind of, you know, as you mentioned in my introduction there, with my degree, my undergraduate degree in health psychology and fitness and sports science, my interest really lies in sports psychology. So when I was going to UBC and doing my thesis and thinking about, you know, what areas I might want to focus research on,
 
02:00
That's where looking at the cognitive effects on hockey official referees and their penalty decision-making kinda came about and looking at more of the psychological effects on how that could affect their decisions on ice and the games overall. So without getting into too much detail, basically, I recruited local minor hockey officials in
 
02:27
lower mainland of BC and I had experienced officials involved as well who essentially, you know, I used the minor hockey officials to collect live footage of minor hockey games using GoPros on their helmets because I wanted to use this as part of my research to look at these effects to help with referee training and at the minor hockey level. And so a lot of the research
 
02:56
that they use to help train referees, but it's from a spectator's view or a bird's-eye view, which isn't as realistic as having something on someone's helmet where, you know, that's what they're going to see on the ice. So collective videos that way, and then had my experience officials, after I went through video clips and edited pieces where there could potentially be penalty calls, I had the experience officials evaluate watching those clips, whether they were penalties or not.
 
03:25
and that was basically my answer key. And then I used minor hockey officials to then look at those videos and make their call and had that in different video sequence conditions. So basically there was four sequences where they would see. So one would be as if you're watching a game all the way through with information of that game. So the, what you might see on a score clock available.
 
03:53
And then I had that same condition without that information available. And then the other two conditions were randomized with or without information. And really what I was looking for was if game information was going to potentially influence their decision making. So say the home team's up three to one and there's a penalty against that home team. Are we going to see any differences with what they might be watching? And then I also used a.
 
04:21
a existing um... stress questionnaire for officials to uh... that really about you know they was just a questionnaire or it was you know how stressful do you uh... find verbal abuse from coaches and they would read it on on the scale you know i i just find it interesting because i i i uh... did play hockey growing up and i did it the referee for two years uh... was you know you're much much younger probably around the age of sixteen and you know talking about stressors of
 
04:50
you know, parents and coaches yelling at somebody that's that goes into how you might end up officiating your game. Yeah, and obviously, you know, as you mentioned, I have played hockey for most of my life and was fortunate to play in college. And so that's where looking at officials in that sport kind of drew that interest. And I had a bit of a machine and coaching experience as well within hockey. So, yeah, so definitely interesting. You know.
 
05:20
stuff to look at and, and we'll have lots of sports euphemisms. So that tees it up for this. Tell me a little bit about sportability. Yeah, so sportability in a nutshell is a disability sport organization for British Colombians with physical disabilities. So we oversee we're a multi sport organization. So we oversee para hockey or what's better known as sledge hockey, bacha, power chair soccer and para soccer. So we
 
05:49
really our goal is to provide access to sport for persons with disabilities in bc and uh... and that's anywhere from starting out and getting involved at the grassroot level uh... all the way through to high performance so trying to provide those opportunities for different sport pathways uh... so people can participate uh... where where they bet you know where they feel most comfortable now you've got uh... a huge background in sports
 
06:16
you education in sports what got you interested in working for this particular organization yellow i a aside from hockey uh... like on a personal uh... standpoint i crook plane uh... lacrosse it with another one that uh... was kinda keep me in shape for the summer as i got more competitive with hockey and uh... i enjoyed golfing skiing uh... really just being active in now in my adult life just kind of active for life
 
06:45
play, I think, four or five different sports. Some more, some like golf, you know, where it's just in and out, you know, just kind of here and there. And then there's really four sports that I play to in the winter too, in the spring, summer, that are team sports and stuff. So yeah, just personal that way. And then, you know, my education interests there. And then I briefly mentioned, you know, I was involved in rafting and I was coaching
 
07:15
U18 girls rep team when I was finishing my math or doing my master's as well. So kind of that coaching side and really when it was nearing the end of my master's degree I was on a contract student position with Pacific sport Fraser Valley. So my job there was a physical literacy coordinator. So I was doing a lot of general just physical literacy or fundamental movement skills and
 
07:44
really just getting kids active. So whether that was through sport or recreation with Pacific sport. And then as I was nearing the end of my masters and that contract was kind of timing with that, I was looking to get into a full-time career and in the sport field and just looking for that job. There was a position with sport ability at the time for full-time positions. So
 
08:11
Yeah, just interviewed there and, you know, here I am today, I guess six years later it worked out. So yeah, that's how I got involved in that. So as it has, you know, being involved with athletes with disabilities, that has that opened up your your eyes and your mind a little bit in terms of sport? Yeah, yeah. So and that was something I, you know, I've had this conversation with other people, you know, they've asked how I got involved or what kind of
 
08:39
drove me to adaptive sport or working with persons with disabilities. And I guess when I applied, you know, I wasn't really thinking too much of whether it's mainstream sport or, you know, a different avenue with adaptive sport that would be new. And I had a bit of education, you know, maybe a class or two where we talked about, you know, human growth and development and we would touch on different things of...
 
09:05
uh... disabilities and things like that but it wasn't a primary focus like say somebody in recreational therapy for me uh... so yeah it was it was really new in terms of who i was serving in who i was working with uh... coming into sport ability but really you know not to sound cliche or anything but it really is uh... and you you just adapted
 
09:34
Yeah, so I mean, I just really learned, I guess, along the way in terms of just from, you know, athletes that I work with themselves or coaches about, you know, maybe the different adaptions or maybe understanding their disabilities a little bit more. But yeah, I mean, even today, it's not a, I go and it's not a primary thing I'm focused on of what's this person's disability. You do obviously it's important to know and acknowledge because
 
10:03
that's helpful information to know, but I mean, typically I just ask the individual, you know, as an example, like, how are you most comfortable transferring from your chair to the sled? I'm not going to tell you how to do that, you know, you know your body the best. I think it's, you know, and that can be different for everybody, even if they do have a similar disability than someone else, it still could be very different. So, yeah,
 
10:33
I'm not afraid to ask somebody a question. Obviously I'm trying to be respectful and understand what works best for them because I want them to have the best experience. So yeah, that's kind of been my approach of really just being open to learning and yeah, really just chatting with people and getting to know them and seeing where they're comfortable in terms of if there are certain...
 
11:00
adaptions we have to make to say like equipment's the biggest part where we have to make different adaptions. Even, even if it is adaptive equipment, you know, like I said, everybody's different. Sometimes we need to figure out a way to even make that that work for different individuals as well. Of course, that's not a one size fits all kind of thing. Yeah. So, the sport ability, I know you facilitate, you know,
 
11:27
soccer and hockey. Do you actually train athletes in these vocations if you will? Like have you got training programs? Yeah, so the way we kind of touch on all different areas. So programs, so something like a weekly program, we try and like depending on the sport there are different programs across the province in different locations and that's really
 
11:56
where there's the resources and the partnerships that we work with because we're, you know, we're located in Vancouver, we're a small organization, there can't, we can't be everywhere at once. So really building relationships for coaches or community partners and facilities to get things, you know, up and running and happening on a regular basis so people can access these types of programs.
 
12:24
That's a huge thing with us and volunteers and everything. So that's kind of the program side of things. And then in terms of, you know, I touched on the different pathways. So say somebody trying to progress to a competitive stream, that's where we'll find typically, well, everyone really the volunteers is the coaches and stuff. Typically at the high performance level,
 
12:53
those coaches, I mean, at least right now, have some sort of connection to that sport. So whether they're a family member or they've worked with us before, say as a summer student or something that have just really been interested and wanna support and help out, that's really at the high performance level of where those people come into place and officials and everything.
 
13:20
But we also offer training camps throughout the year to really kind of a mix of two things. One, to whether it might be helping maybe gain more interest in the community. That's a new program. Us being there trying to build up and help those leaders who've said they'll support, but they need a bit more training or resources or just opportunity to connect with us and our athletes that have been playing a while. That's always a helpful thing.
 
13:49
We'll hold those camps for that, for recruitment, and then also just the high performance side of things. So say a provincial team, they'll have private camps that will be for their training to help them, you know, train for their competition that we go into. So with the high performance teams, that's typically a Canadian national championship that they train for throughout the year to then compete against other provinces.
 
14:18
at the end of the season. Now, I've got a son who plays soccer and, you know, growing up finding coaches, you know, even sometimes finding officials for, you know, typically developed kids is sometimes difficult. Do you is it is it easy to find coaches to come in? And that said, are these specialized coaches as well? Yeah, so I guess it would it would.
 
14:45
I wouldn't say easy. I mean, you're asking volunteers to commit quite a bit of their time. It's really hit or miss, I think, depending on the situation, the sports. And yeah, so what that looks like. So as an example for a situation, so we have community coaches. So people that are volunteers that run a weekly program.
 
15:14
you know, in Vancouver, say. Those volunteers are, the way that I've kind of connected with them is really through things like Volunteer Connector, connecting with university programs, so say UBC-KIN or UFB-KIN, and yeah, just really, and even partners there. So we have some teachers that we've connected with to do.
 
15:42
you know, information talks for their adapted sport class that then we're speaking to the students that can help, that might be interested in getting volunteer hours or getting involved to help, you know, maybe their goal is physiotherapy down the road. And even things like that Sunset Community Center that we met at for the Disability Association there.
 
16:06
um you know that's a way for us to get visible and and be open to recruiting volunteers and or participants so a ton of our volunteers are are just people that you know are looking for opportunities to volunteer and then they really learn um we mentor them and provide them resources and training to talk about the sports and working with uh persons with disabilities um
 
16:32
But people that are involved more at the high performance level typically tend to be volunteers that have another connection. So whether they're a family member of one of the athletes or like our provincial botchia coach, she used to be a former employee with us and, you know, really took to botchia and had that knowledge when she worked with us and was interested in coaching. So, yeah, so it all kind of varies.
 
17:01
The community partners, you know, I mentioned are huge with getting programs going. So an example of where we have those is in Prince George, the Northern Adapted Sport Association. They oversee para hockey there and they also oversee other adapted sports like basketball and things like that. And then in Kamloops, Kamloops Adapted Sport Association was involved with us in beginning with the Kamloops.
 
17:30
Parahockey program, but also Pacific Sport Interior has been a partner there. So yeah, it really varies on, I think the situation, the program support and then the event support and the high performance team support. So yeah, and then in terms of officials, it's same thing we kind of do with our community coach call outs.
 
17:59
when we put on volunteer connector or reach out to universities and different things, we'll use to put out there when we're looking for to host a referee clinic for one of our sports. And then just hope people sign up and mentor them and stick around. But even in, even we found with, as example, with our botcha referees, they're the ones that typically
 
18:27
stick with it and are really helpful for somebody that's had a connection to the sport somehow. So it really seems to be that tight-knit community. That's great. Now, sportability, like in the drop-down on your website, you offer a few different sports. You've got power soccer, you've got the sledge hockey, the boccia, which you've...
 
18:50
I'm not sure if I'm saying that correctly. Is those those are the sports that you focus on or is there like more to it? Yeah, so we have four sports. So I think para soccer is back up on our website. So yeah, so para hockey or sledge hockey, I could give a brief description of each sport just for the listeners. If you call power soccer, what do you mean by power soccer?
 
19:18
Yeah, so power soccer is power wheelchair soccer. So it's a form of soccer used by power wheelchair users. So we play typically in a gym with an oversized soccer ball that's about 13 inches. And on the front of each person's power chair, they use a what we call a guard. So it's either a plastic or metal essentially kind of bumper that we attach onto the front of their chair and they're, they're able to use that to
 
19:48
kick the soccer ball and the soccer ball is larger, partially for visibility just if you were sitting in a power chair using it so you can see it in front of you, but also just so it doesn't get stuck under the guard or under the chair, you know, to then wedge there. So in power soccer at a game, there's usually a goalie on each team. So you set up nets with the large cones in the gym.
 
20:15
And then there's three players each on the floor. So four for each team total. And you just, yeah, the goal is a lot of very similar rules to mainstream soccer, but yeah, really just trying to get the ball in the net to score goals and win. And there's some different rules within that in terms of two on ones and being in the crease and things like that. And power soccer.
 
20:43
isn't yet a Paralympic sport, but it is a World Cup sport. Oh, it sounds that sounds great. I mean, I actually it actually sounds fun. Yeah, it's very cool to watch. And even in power soccer, there is a specific sport chair that can be bought and used for power soccer that basically is more agile quick. So it allows for more power when kicking the ball and things like that versus a everyday chair.
 
21:12
Now for sledge hockey, we're Canadian, we like hockey. Are the rules primarily the same? Yeah, very much so. So it's really all the same rules as standup hockey. There's a couple of different penalties. So there is one called stabbing, which is what it is, sounds like. Because yeah, in para hockey, there's to...
 
21:40
push yourself on the ice, you have two, essentially two small hockey sticks that have, you know, the curved blade on the end to shoot and pass, but on the other end are ice picks. And that's what you use to push yourself on the ice. So you, if you've got a stabbing penalty, that would be using your stick to stab an opponent. You know, hopefully people don't do that. I guess that's kind of like slashing in it. Yeah, yeah. But that sounds more painful. A little bit more, it would be a major.
 
22:08
And then there's also a penalty called T-boning. So that would be when you use the front of your sled to ram or run into another person's sled from the side, front, back. I would call it something similar to like a check from behind. It's a dangerous play. You're not to use your sled as a bumper car as a weapon, right, to hurt because they're steel.
 
22:33
So if you got hit in the side of the leg with that at a pretty decent speed, that wouldn't be great. But yeah, everything else in terms of the rules are the same. Different things that kind of come up are like to call an offside, you would call that based on where the blades cross the blue line, because depending on the individual, so say there's somebody that has a double leg amputee, they would have a shorter sled nose, like where their nose is on the sled,
 
23:03
um you know maybe plays that have spina bifida say um that their sled's longer um has any of that room for their legs that um yeah calling an offside you would call it by the blades versus the the nose of the sled um so yeah so a couple different things but um yeah I mean if you watched a game it wouldn't be anything
 
23:26
different than you watching, you know, mainstream hockey games. Now officiating for sledge hockey, are the officials have to be in one of those devices as well or can they just be typically developed or someone who doesn't have a disability? Yeah, so yeah that's a good question. So I've only seen stand-up officials in para hockey, so officials that, you know, use
 
23:55
skates on their feet and officiate it. It's helpful in terms of, I think, one, seeing the play, because you're able to look down, since everybody's sitting in the floods. And also, just if, I think if there was an injury or if you need to get somebody out of a scrum or whatever, getting in there is a bit easier than if you were using a flood. And same with dropping the puck and things like that. But I...
 
24:25
I yeah, like I said, I've never seen somebody officiate in a sled, but I'm sure it went, you know, if that opportunity came up, it would definitely be up for discussion, I'm sure. You know, depending what level it was, it was taking place at. Sure. Now you've got you've got bocce ball and what other sports? And para soccer. Para soccer and power soccer are two different things, are they? Yeah, correct. So para soccer is a is a version of stand up soccer.
 
24:54
So it was, I think it was originally called Seven of Side Soccer, but they've changed it to Parasoccer. But essentially it's shorter fields, smaller nets, and it's really a game that was developed for people that might have say a low level of CP, so they're ambulatory, but maybe their gate or their energy is affected because of their disability that playing in mainstream soccer would be challenging.
 
25:22
or somebody with a brain injury, things like that. So yeah, so it's nice to have because I often find chatting with people, they're people that have disabilities where they're often told they might not be disabled enough or, you know, or there might be, you know, it's not completely visible to.
 
25:50
to everybody. So it's nice to have a sport where it's essentially made for that group of people because often other adapted sports that might be something where you know they might not be what we call classifiable in that sport if they wanted to say compete at a high level or again in mainstream sport it's challenging because their disability is affecting you know
 
26:20
really being able to enjoy it and keep up and have fun, right? So yeah, so that's where para soccer is, in my mind, is a very niche group. And I love, you know, with soccer being such a huge sport really around the world, it's, I'm glad to see that there's an option there for everybody.
 
26:40
Yeah, you know, with the power soccer and yeah, so and everything to use. So are your services primarily for people with physical disabilities or are there athletes with developmental disabilities as well? Yeah, so our mandate and our really who we serve is is persons with physical disabilities. But we have had athletes that they might have a dual diagnosis. So developmental and physical disability. And really.
 
27:09
a program level, so community weekly, everyday program, if somebody with developmental disability wanted to come and play, we're not going to turn them away. But if that person was looking to get into high performance, that's where the classification starts to come in, where they have to meet a criteria essentially to participate at that level.
 
27:37
And then also just looking at, because this is a question I get quite often from people, you know, looking to get involved in sport is something, a tool that I have is, you know, knowing about other sport organizations for persons with developmental disabilities as well. Because I'll get asked often, you know, well, is my child able to participate in the sport and, you know, what would be the best way?
 
28:05
other organizations that focus on persons with developmental disabilities, it's nice to have and being able to provide people with those spaces because ultimately they're going to have a better experience with that focus to help with their needs as well. So yeah, so there's a reason all these different organizations exist, right? Yeah, exactly. Yeah, so we, like I said, like we don't...
 
28:35
turn people away at a community level or even say a local event if we're having like a fun tournament or something. But as you know if somebody was looking to progress in sport there are there's a classification system at that level where people are assessed and part of that assessment is their disability. Now how have you seen this sort of sector grow over the past few years?
 
29:02
Yeah, it's why I mean, we had the COVID break there. So that was a bit weird. But the last couple years, you know, it's been great to see people back out. I think I would like to be optimistic and think that the world is becoming more aware of ableism and just being more aware of, you know, considering everybody when say building something or in, you know, hosting an event.
 
29:32
you know, I feel like I've noticed it in certain situations. But yeah, there's still a ton of work to do. I mean, even like the Paralympics, I think it was, this was probably maybe only the second year or so that even Paralympic sports were televised. You know, so it's that that tells you something in terms of where we're headed in a positive way. But it also just kind of shows how
 
30:02
um some stuff is too right so yeah now in export ability has the their four core sports are you planning on expanding that at all I know where where we're pretty busy what we got I'm we actually and before my time we actually still receive a lot of I think there's about seven or eight sports my colleague he's our executive director I'm you know quite a few years ago was in my position and yeah I don't know how he
 
30:30
oversaw so many sports. But yeah, what it really comes down to is, because we're a non-profit, is the funding, right? So if we have too many sports under our mandate, we have to split up that funding even more so, and then are we able to deliver in an effective way? Yeah, good point. So it's kind of that balance as well of, you know, what's in our capacity.
 
30:59
And that's capacity staff wise or funding wise and everything because we want, you know, we want to be able to offer good services, right? So. Yeah. So where does, where does SportAbility get its funding? So majority of our funding is through government grants. So ViaSport is our sports sector leader. So basically how that works is they receive funding for sports for BC from the government.
 
31:28
We provide like we as a sports association amongst every other sport organization in BC provide you know feedback on where we would like to put funding where we see needs and you know they communicate that with the government because they have their say as well and then really they develop these grants based on all that information and feedback where we can apply for things.
 
31:55
and be able to deliver on that. So that's majority of our funding. And then we look at other different types of funding. Like I think different banks have some grants that come out. We have our national sport organizations that provide that sport specific funding for us to apply for for different projects. And then also, you know, fundraising and
 
32:23
Yeah, really looking at different ways to diversify funding is something that's, you know, kind of ongoing. Because you never really guaranteed anything. Yeah, exactly. You always have to apply for it, right? So yeah, and it's good to mix things up a bit and have different resources. And really, again, it goes back to even just building, you know, strong relationships, even to have something sustainable moving forward as well. Absolutely. So last and final question, how do people get in touch with you for more information?
 
32:52
Yeah, so best way to get in touch with me is through email and that would be my first name, Jade, J-A-D-E, last name, Werger, W-E-R-G-E-R, at sportabilitybc.ca. They can also check out our website just to kind of learn more information and maybe see where active programs are and just learn about our different sports and that's on our website at sportabilitybc.ca.
 
33:21
And then we also have our telephone number, which, the phone number off the top of my head is 604-324-1411. And that just goes to our office. But yeah, usually email is a best way to reach me at, to kind of in and out quite a bit. Well, that's great. I think that about wraps it up, Jade. I think we've covered all the little facets of sportability. So thank you very much for joining me today.
 
33:47
Yeah, thank you. And yeah, I encourage people if you don't see anything on our website or you didn't hear anything today that you had questions about, to please contact me. Even if there's not a existing program, say in your community, it's something we're always looking to expand and offer just so more people can have access. Fantastic.
 
34:09
You have been listening to DDA's Encouraging Abilities podcast. Our guest today has been Jade Werger, the Sport Development Coordinator for SportAbility BC. Stay tuned for parts two and three of our Adaptive Sports series. I am your host, Evan Kelly. Thanks for listening.
 

Changing Attitudes One Street at a Time

The City of Vancouver is making strides with its Accessibility Strategy. DDA chats with the city's Accessibility Planner, Karen Lai who offers perspectives from her lived experiences.
 
TRANSCRIPT
Changing Attitudes One Street at a Time
 
00:06
Hello and welcome back to another episode of Developmental Disabilities Association's Encouraging Abilities podcast. I am your host, DDA Communications Manager, Evan Kelly. Joining me today is the City of Vancouver's Accessibility Planner, Karen Lye. Karen has worked in accessibility and inclusion consultation for over 20 years.
 
00:25
Now as someone with cerebral palsy, Karen brings a lived experience to her work and an understanding of the limitations that society places on people with disabilities. She has previously done work which helped some people with disabilities integrate into workplaces. She runs her own consulting firm where she ran workshops and developed budgets for inclusion initiatives and worked with many non-profits to improve their accessibility. She holds a master's degree in human kinetics from UBC
 
00:55
2020 award by the YWCA of Metro Vancouver. So thanks for joining me today, Karen. Thank you for the invitation. Now, we'll get to inclusion and accessibility in a moment, but tell us a little bit about yourself. Yeah. Thank you. I was born and raised in Vancouver and I
 
01:21
have been doing much work in improving accessibility. That's what I do for work. But at the same time, I am very...
 
01:41
hanging out in the outdoors with my friends and going the long bike ride with my bike. But yeah, I've been in the field of inclusion and accessibility for well over 20 years, and I'm continually learning about this area.
 
02:11
So in sort of in a nutshell, Karen, what does accessibility mean to you? Well, accessibility means to me, it's more than the built environment. It's that once you get in the door, are you able to feel like your decisions matter? Like do you have a role in the decision making?
 
02:39
Do you have a role in the workplace? Is it more than just physically getting in the door? It's...
 
02:52
It's getting you what role to play in the larger game of community. Yeah, that's just it. I mean, it's it's, you know, that whole thing. Nothing about us without us, you know, making sure that that anything that is created accessible is created from those with disabilities, their point of view.
 
03:21
Right, right. And it's also about do you feel valued? Do you feel belong? And it's not just about your own physical space. It's also do you have an opportunity to go in other people's houses, but closer and closer. So, um, it's also
 
03:51
and accessibility from a community perspective, not just at the places where you move around, but do you have the ability to go over to a friend's place or whatever, because those need to be accessible as well.
 
04:18
Yeah, like everything. And you know, I've been talking a lot about accessibility with with other people on this podcast and how even businesses need to be more accessible because if you can't get people into your store, you're not selling as much as you can. There's a huge motivation for businesses just by themselves to be accessible to everyone. Totally. Yeah.
 
04:47
I agree. Now, I took a little line from your LinkedIn page. You say inclusion is a two way street. Can you expand on that a little bit? Yeah, I think we all have a role to play in advocating. The one individual that knows me the best.
 
05:16
is myself. Though I have a role to play in telling others what kind of needs I have, what support I need, how do you work with me, though that's my role. And if the other people's role is to create a culture of
 
05:43
welcomeness. You allow me to tell you what I need. There is a two-way street in that we both need to work together to create an environment where we all can work well together, though we both have a role to play.
 
06:09
And how do you think that conversation is going over the, you know, when you look back on your life and what you've managed to accomplish, to accomplish in spite of a disability, do you think that conversation, you know, with people like me who don't identify with a disability, do you think that conversation is getting better? Do you think the messages are getting out there? Do you think the support is improving?
 
06:35
I think as a body, physical activity, physical sensibility, it's relatively well. It's not perfect. But I think we have a long way to go in terms of attitude, in terms of accepting the culture. It is.
 
07:04
about shifting the culture, slowing down your peace. We live in such a fat, big world. And in slowing down and really building that relationship, and really getting to know people and connecting with people. Yeah, I think it's...
 
07:34
It's growing, it's increasing in small increments. And it also depends on the person as well. We're all human beings with so much complexity to each individual. We carry so many complex identities.
 
08:02
And it changes from people to people. Now going back, you did your studies in human kinetics, and you've got a master's in that from UBC. How did that alter the way you view your own disability?
 
08:20
Um, I think it advanced this because I really thought, uh, before I did my master's, I really struggled with the word inclusion and what it means to feel included. And, um, I, I really believed that inclusion was about
 
08:50
putting everyone in one room, no matter what their disability is, and just building a program from that, from one room. But because we, because in this best, I learned from my master's,
 
09:13
about intersectionality and how we're so complex beings that putting everyone in one room is not inclusive. Because how can you have one program that meets every person's needs?
 
09:43
and not but the book that i would want program meeting and but the uh... no i think included and they're very happy in did that uh... i'm and that that included in that map long contract then what
 
10:12
in and around that does make that a much, much more complex thing. But you know, sort of going back to accessibility, which is, you know, what you like to talk about is the idea of...
 
10:26
universal design. Now you just mentioned that inclusion can be a very individual thing. If we're talking about accessibility, do you think universal design is really possible or can we just only hope to get as close as we can?
 
10:45
I think there's so much more work that can be done, but that's just a baseline. Universal Design, I don't think... I mean, what is an accessible city? I don't even know what that means, because...
 
11:09
And acceptable study can mean one thing to me and one thing to a different person. So I think a universal design is a good goal to reach too, and then we need to do more. So we should be a little bit realistic about that, I guess. Yes, yes, absolutely.
 
11:37
Now I want to ask you something else before we start getting into you know your work with the city is I don't know what is it adventure therapy and what does it offer that other kinds of therapies don't. And then the power of the outdoor. So what what one could then learn from being on a outdoor trip.
 
12:06
There's so much I used to do with adaptive kayaking, adaptive skiing, where people with disabilities or other ones can gain confidence by being in the outdoors. There's something better about being in the outdoors.
 
12:36
where you learn new skills and you learn how to create new opportunities. Just from being creative and working beyond their box. And you learn, you always learn something new from being in the outdoors.
 
13:04
and with each other. So that's what a best friend film would be me.
 
13:13
And you find that more, you know, for someone with a disability, is that a more effective therapy than other things you've done? It definitely did... did one thing for my life. I won't be the other people's life. It definitely brought out...
 
13:42
new perspective of how I defined my own disability and how I determined new ways of learning about myself and about my own disability with the power of the outdoors.
 
14:08
Sounds good. That sounds really good. I think we see a lot of different.
 
14:14
things now in the outdoors and it's just so nice to see even the outdoors, not just buildings we build that are becoming more inclusive for everybody. But now switching to the City of Vancouver where you find yourself, like a number of other municipalities across Canada right now, they're developing accessibility strategies. DDA, we've got a member of our staff who's involved in Vancouver's consultation process. The strategy, as I understand, is now in its second stage.
 
14:43
So tell me how and why this whole accessibility strategy came about. Well, so firstly, the provincial BV government passed the Accessible BV Act back in 2021.
 
15:07
where it mandated all of the prescribed organizations, meaning municipalities, to meet three requirements. Do you have an accessibility plan? Do you have an
 
15:35
Vancouver was one of the first municipalities to start inventability conservation way before the Inventable BC Act came into place. It was directed from council in 2018.
 
16:01
to develop an accessibility strategy. And it's also mandated as to put together an accessibility task force. And it is made up of people with lived experience with from
 
16:28
two of council committees and then the task force would guide the development of the accessibility
 
16:56
We developed the Phase 1 of the accessibility strategy, and now we're working on Phase 2. So what was the goal of Phase 1?
 
17:13
do highlight eight different focus areas and also do create a comprehensive citywide accessibility
 
17:44
You look at the built environment, housing, communication from an accessibility lens. It was divided into eight different focus areas and they range from built environment, transportation, housing, information and communication.
 
18:12
employment, government and engagement, capacity and collaboration, and then advocacy and working with other orders of government along with other agencies. So those are the eight different focus
 
18:43
um, game with high level access to the item to increase accessibility. Now, is that mainly to provide, um, guidelines for, for, um, city staff and city infrastructure, or is it really to make sure that, that we've got bricks and mortar and, and making physical changes to things?
 
19:13
Is it really both? And then faith do is kind of building the multi-year action plan. So we don't really know how, what are the details of each action item. And that will come later on in the faith. But mainly it's a guide of where they...
 
19:40
where departments are working towards, he increased accessibility in the city of Vancouver. Now, you know, even just going back a little bit, I know you're working on this accessibility strategy, parts one and two. Where do you see room for improvement in the city of Vancouver's approach to accessibility?
 
20:08
I've been, you know, city of Vancouver and we have done so many things to increase visibility, but at the same time, we have a long way to go. And it's creating that consciousness of automatically thinking about people with disabilities.
 
20:38
and how we do our engagement, how we do our design of buildings, how we design blubber
 
21:03
Now, so I mean, at the end of the day, a lot of this just comes down to prevailing attitudes about people with developmental or disabilities of any kind really, that somehow they're less, that they're not worthy of taking these things into current consideration. Would you say that's correct?
 
21:23
It depends on the people, you know, and yes, I think we have a long way to go in attitudes and changing the narrative of people with disabilities, but we have done a lot in terms of...
 
21:46
I think we have a new back training of disability awareness. We are getting there, but we have a long way to go. Now, say the city of Vancouver granted you an unlimited budget and total creative control. What's a dream project you would love to undertake? I would really love to do...
 
22:16
work with the ultimate change maker.
 
22:24
How do we build a culture of vulnerability and meet people where they're at? You know, and you talk about attitudes, you talk about people thinking less than or ableism. And I would really love to work with senior leaders in terms of
 
22:53
How do we really and truly embed a culture of kindness, a culture of vulnerability, so that it would trickle down to how we automatically think of everyone?
 
23:16
Mm-hmm. That's a big mountain to move, I think. Don't do it. Don't do it. And so, in your work advocating for inclusion, what approach do you take towards people who are resistant or skeptical to some of these changes?
 
23:38
You know, I like to meet people with curiosity. And I like to say, you know why? And then come up with a mind of wonder and say, why are there some aspects you don't like, or what is it that makes you think?
 
24:06
like this because we could never we could never assume why they are listed this
 
24:30
So right now are there any city of Vancouver projects you're particularly excited about outside of the accessibility strategy? Well, I don't really know how to answer that because accessibility strategy is my main project. So I can't really tell you what my other projects are.
 
25:00
And disability is all that I do. But I do enjoy working with other departments. I do enjoy working with them to shift their narrative of people with disabilities and working with other departments.
 
25:26
Do you have any final thoughts on accessibility and how Vancouver and British Columbia in general is doing when it comes to accessibility? You know, having been born and raised here and having a very, you know, limited experience in terms of travel.
 
25:54
And golden to me, I think Vancouver, city of Vancouver is on the right track. Um, we have a long way to go, but, um, I think slowly but surely.
 
26:15
Yes, and I think attitudes here are typically a little bit better than other parts of the world, from what I've seen. But on a more deeper personal level, do you feel included here? I worked really hard to develop a community of friends. And...
 
26:45
family, you feel included. I've worked really hard in terms of myself and where my disability falls and how my disability plays out in my own life. So speaking for me, I've worked
 
27:13
really hard to do that. And then from how I turned my disability in my own life, I could build a community that I still included. That took a long time to do that.
 
27:40
So now I feel like it's just a long time. So I want to thank you for joining us today and talking about some exciting things you're working on with the city of Vancouver.
 
27:53
You have been listening to DDA's Encouraging Abilities podcast. Our guest today you're listening to is Karen Lai. She's the accessibility planner with the City of Vancouver, where she's making great strides in improving inclusion and accessibility for the disability community here in British Columbia. Karen, thank you so much for joining me today.
 
28:14
You're welcome. And it was a great opportunity to come here today. Thank you very much. I'm Evan Kelly, DDA Communications Manager. We'll see you next time.
 

DDA Chats with Disability Advocate Spencer van Vloten

Success will come when advocating and fostering change in prevailing attitudes when it comes to disabilities. In this episode of DDA's Encouraging Abilities podcast, we chat with well-known disability advocate Spencer van Vloten who prides himself on being a champion for the disability community.
 
TRANSCRIPT
 
DDA Chats with Disability Advocate Spencer van Vloten
 
00:06
So welcome to another DDA Encouraging Abilities podcast. I'm your host, DDA Communications Manager, Evan Kelly. Today we're joined by Spencer Van Vlaten. Now, Spencer is a very well-known and outspoken member of the disability community.
 
00:20
He's the editor of BCDisability.com, a chair of Community Living BC in the Vancouver Council. He's a nationally published writer and advocate who has written or talked, rallied about countless issues that affect the disability community here and abroad. He is passionate about community living and social policy. He has been awarded the Medal of Good Citizenship by the province of BC, the City of Vancouver Excellence Award, as well as being named
 
00:50
the year, not to mention he's very active online on Twitter where we often connect. So thanks for joining us today Spencer, really nice to have you here. Yeah thanks Evan, I really appreciate the opportunity. And I have to add that it's you know in the days of post-COVID it's nice to have someone in the studio for the first time utilizing the equipment that we have here. Absolutely. So right off the top just tell us a little bit about yourself, like why are you such an advocate in the disability community?
 
01:17
Well, I'm from Vancouver and I also spent some time in Lannley growing up. I first became interested in advocacy as a kid. I have a cousin with cerebral palsy who is a few years older than me. And so I saw growing up the barriers they faced. And that led me to want to work within the disability field when I got older. And so I've done that with organizations like Easter Seals and Community Living BC.
 
01:48
As I grew up, I also began to notice more of the interconnections between issues. So, that disability justice isn't just about disability, but it also involves issues like housing and poverty reduction. Housing also involves issues like mental health. And so I became very interested in the way so many things in our society and so many of the outcomes we want to see are linked.
 
02:17
And so that led to a sort of general issue in community affairs. And at the moment, as you mentioned, I run bcdisability.com. I also run umebc.ca. I love writing on a range of different policy issues out there. And yeah, I just have a passion for inclusive communities, and I hope that's reflected in my work.
 
02:43
your own education has gone into that route as well? Oh absolutely, so I studied, well in university I studied political science. I was particularly interested in how to use you know advocacy within political channels to to achieve the outcomes we want to see and that's become a big focus of my work and I think I think ultimately you know a lot of the things that advocates are pushing for.
 
03:12
are ultimately achieved through political ends. We want our policy makers and our lawmakers to enact a certain bill that will bring into effect the candidate disability benefit or more support for youth with Down syndrome. And so my studies of political science are really linked to what I do now. I also studied sort of general studies in issues of equity.
 
03:40
and how to create inclusive communities. And so I'm really pleased that I was able to actually study in an area that I not only had a great interest in, but I've been able to work in as well. Because so many people, they do their studies in university, and they go off, and they happen to get a good job, but it's not related at all to what they studied. And so thankfully, I've been able to incorporate my education with my work. That's good. I mean, that's reaching the goal. Now just sort of jumping right into.
 
04:09
policy and things. I mean, there's a lot of things going on in Vancouver right now. There's a lot of housing issues. There's...
 
04:17
substance abuse issues, how are we doing in terms of, in those fields in your mind, in terms of even accessibility? Well, on accessibility, I think we're thinking more about accessibility lately, which is a good thing. We had our first ever, ever provincial accessibility legislation brought in just not too long ago.
 
04:47
been working on its accessibility strategy and is about to go through phase two of the consultations for that. Yeah, we're involved in that as well. Yeah, absolutely. And I know that that process has been, there's been great involvement in consultation with the disability community in that. So that's good. We're definitely thinking about accessibility. And I think it's gone beyond just, you know, physical spaces.
 
05:15
but also thinking more about technology, information, education, and attitudes. And I actually spoke recently with a Japanese accessibility scholar, Maiko Sugawara, and she was so impressed when she came here with just how, I guess, the attitudes here and the support, the general support for people with disabilities. But that said, that's a good of it.
 
05:45
The problem is that people with disabilities, whether they be physical, developmental, or both, are still facing a lot of barriers. And I know actually of cases with some well-known disability organizations, not the DDA, but where they actually themselves had issues with accessibility in their buildings. And so you can see even organizations that do great work for people with disabilities have accessibility issues.
 
06:15
When people think about accessibility these days, it's still not automatic. It's still not embedded in just our thought process. It's kind of more of an afterthought, something we have to will ourselves to think about. And we're doing that and that's a start, but I think we need to take that to another level, or else we're just gonna keep overlooking things. Well, yeah, absolutely. And it's the one sort of concept we're trying to push and other organizations, associations are trying to push
 
06:46
developers is this idea of universal code rather than getting something to a building code which can make something somewhat accessible. It might have a ramp or something like that, but if let's say you go up to the 13th floor or whatever and there's a fire, there's nothing in that code that shows how to get someone in a wheelchair necessarily out of that building. So it's still somewhat, so when we build something, the code...
 
07:13
it doesn't mean it's accessible to everybody. We really need to include the disability community to understand so that the developers, the builders, policymakers understand that.
 
07:27
things have to be done with their specific input. Yeah, and you know, when we make things accessible, it's not just helping people with disabilities, it's helping mothers who may be pregnant or may have to have a stroller they're pushing around, it's helping seniors. Really everyone benefits, there's no one who is worse off because of greater accessibility. And so, yeah, there still needs to be greater progress in the practical side of things.
 
07:56
and uh... you know i think things are in the right direction but there's still many steps to be taken and you know it doesn't even have to cost that much to make something more accessible you know putting in putting in a uh... door handle that there's a lever rather than and on makes that absolutely people to access
 
08:15
So you recently wrote about how we're falling short of adequate support for children of Down's Syndrome. How can individuals and organizations like DDA push for better support and resources for British Columbians with developmental disabilities like Down's Syndrome? Well, I think it's, you know, there's a phrase, squeaky wheel gets the grease, and I think that's often very true when it comes to advocacy. It's crucial to apply constant pressure on the people who make
 
08:45
decisions over who gets what resources. So it's important that we are always raising our voices, whether that's through social media, through talking to friends and family, through organizing campaigns, through donating to an advocacy group that we think does good work. There needs to be constant ongoing pressure and it's so important.
 
09:12
that this is consistent and that it doesn't stop because if you can put all the pressure on government but then if you let up they realize that they just have to hold out and kind of weather the storm for a bit and then you know the thing the thing the case that I want to look at is a good example is you look at the decision the government had regarding the the hubs for children.
 
09:39
uh... you know with uh... you know complex needs uh... they were going to move to this hub model but then the like mostly the the autism community and i don't know how to get there's so much pushback and they organized so well and they just they kept their voices up they were doing rallies and having a fence they were in the media bringing letters to editors they were making appointments with their mla and they just they did not let up
 
10:07
and eventually the government decided to not go forward with this plan or to put a pause on it. And that's an example of effective advocacy. It's intense, it's consistent, and it's working across multiple channels. And ultimately as well, a key part of that is working together and cooperating with like-minded advocates. You know, we can do so much more together than we can when we're fractured. And I think
 
10:38
That's a crucial element as well. So I just, yeah, saying to anyone out there who wants to advocate more for people with developmental disabilities, you know, raise awareness, educate people, get involved and don't give up because change, it may not happen overnight, but the more you persist, the better the chance that, you know, you get what you're looking for. Yeah.
 
11:00
I think, you're right, I mean, the way the government sort of backed down on that plan a little bit, I think they're moving forward on some of it, but I think it might have, it came right down when David Eby took over as well, so I think that might have helped their cause a little bit. Yeah, it was also, the timing was a bit fortuitous, I guess, because David Eby came into power and he had the chance to frame this as, you know, a fresh start.
 
11:28
uh... and it's easier to to to change a policy if you're coming in new than if you were there when it was brought in and have to admit there was in a good idea so uh... but still i think the advocacy was an important part of uh... you know getting the government to uh... to make those uh... to put put put a hold on it for now now from your perspective how does bc stock up compared to other provinces in terms of disabilities from a financial perspective uh...
 
11:57
It's important to note at the outset that pretty much all the provinces are doing terrible. Northwest Territories is the only province or territory that pays over $2,000 a month in provincial disability support. I believe Yukon is next with around $1,700 and it just keeps going down from there. I believe overall BC has about like the fourth highest provincial disability rate.
 
12:27
which sounds good but it's still far below the poverty line and as a percentage of income people with disabilities in bc only make about seventy percent of what people without disabilities in bc makes which is below the national average so i don't think we're doing that good uh... we also need a lot more support for uh... adults with complex uh... needs to live independently in their communities
 
12:55
We have the CSEL program, which could be such a powerful program and could do this, but it's been left to run dry. We don't support youth with Down syndrome like we should. And you know what frustrates me is that so much of the decision to keep certain policies in place is just simply based on what other provinces do.
 
13:19
So, for example, when I talked with the previous minister of social development and poverty reduction regarding the issue of clawing back someone's support because of what their spouse makes, it was basically intimated to me that, well, all the other provinces have the same policy too, therefore it's okay and we're going to keep doing it. The thing is, often all other provinces have poor policies as well.
 
13:47
and we really need to step up, BC needs to be bolder and take the lead on a lot of these disability issues. If you look recently, BC decided to make prescription contraception free. I believe it was the first province in Canada to do so. And about a week after, Manitoba then announced they're going to follow up with legislation to do the same. And so it sets up a domino effect when one province steps up and takes the lead.
 
14:16
So BC right now isn't doing that. It needs to do that because so many people here with disabilities are falling behind. And it's not just because they need money. I mean, the cost of living here is astronomical. Cost of living is crazy. Just like Vancouver, for example, it can cost over $3,000 for a two-bedroom apartment. Our housing market in Vancouver, the prices were already very high. And yet they've gone up.
 
14:46
twice the national average over the last year or so. What I really want to see as well, I was focusing on provincial disability rates, but another important element when it comes to making housing affordable and accessible for people with disabilities is more federal government support. Federal government used to, prior to the 1990s, used to do far more to build social housing and low-cost housing in Canada.
 
15:14
and then the 1990s came and that really dropped off and as a result we have a major housing shortage here in BC. The housing shortage is even greater for people with disabilities because a lot of the tiny amount of what is available isn't accessible. So that needs to change and I really think, you know, I could, someone could frame it as saying well BC does better than other provinces but...
 
15:43
I think we need to look at it is BC and other provinces, the other provinces don't do it well at all. And so there's so much to advocate for here in BC and that's why the advocacy community is very active here.
 
15:59
And I think a lot of the general public don't quite understand. Like, it's not just, we're not just talking about a cost of living for the disability community because there are so many more expenses to being disabled. You might need, you know, accessible technology. I was talking to one of the VPs at the Rick Hansen Foundation and his wheelchair is $38,000. Yep. That's a car. Exactly. You know? And not to mention if he's going to get a car, it's got to be something that's like lift equipped.
 
16:29
be able to get into and draw it. Yeah, I know someone who, they have a specialized chair, they have cerebral palsy. Their chair basically broke down and they need $10,000 to repair it. That's not something that you're facing if you don't have a disability. There's all sorts of expenses like that. So you face greater expenses, lower income, trying to do this while living in, you know.
 
16:56
some of the most expensive cities in the world and it's a tough road. Yeah, that's pretty crazy. But now we're talking, we can switch that to Bill C-22, which I think is in its third reading in the Senate or something. Yeah, it's in the Senate. That might be a good thing. I haven't really gotten down to many of the details in terms of
 
17:22
you know what that benefit is going to look like. I don't know what you've heard. So yeah, Bill C-22 is enabling legislation so it basically will set out a framework from which they can fill in the details. So there's limited information out there in terms of what we know about what it will look like. There's some important elements that I think absolutely must be part of it though. It must be...
 
17:48
something that people can receive whether they're on provincial or federal disability assistance. It shouldn't matter which one they're on. It should be something that's, it should be a meaningful amount of money, not a piddly like $50 extra a month, not to say that couldn't help, but it should be, I think, at least a few hundred. I mean, during the pandemic, I think...
 
18:15
the three hundred dollars extra that some people with disabilities received each month it did make a difference and three hundred dollars back then is about three fifty to four hundred now so i hope it's at least that much uh... so it needs to at least be a meaningful amount of money uh... and it needs to also not be uh... administratively burdensome benefits to access uh... because you know
 
18:40
Navigating government systems and all the paperwork and what you need to do to get this benefit or that can be a hassle. So those are three elements I really think are needed when they start to flesh out the details. And absolutely, I cannot stress enough that provinces should not claw any of this back from provincial disability assistance. We see that far too often. Someone's found a way to get a bit more money.
 
19:06
and the province will just knock it off whatever else they're already getting. And it just sets people who are already struggling even further back. Yeah, absolutely. That's, it's all come comes down to the support. And when people have those supports in place, they can live and they can contribute. So that's where it really, what it comes down to. Yeah. Um, Maid, I don't know if you want to talk about this. Yeah. This is a very, very touchy subject. I, yeah, I'll talk about Maid for sure. You know, I've actually read in a lot about Maid and interviewed, uh,
 
19:35
several people who have pursued Maid, and you know, Maid does have a place in... I think so too. It does have a place for sure in very specific circumstances. There are cases where people simply have, they suffer tremendously and they have no option left to improve their life. That is a case where you look at, you know, where you look at might consider Maid and you might say that that's acceptable if someone pursues that.
 
20:04
The thing is though, the problem is that we are often enabling people to kill themselves and doing more to help people kill themselves than we are to help them get the support they need to live happy, healthy lives. So you know, we need bolder, faster action to address poverty. We need greater programs which help.
 
20:31
People with complex disabilities live in their communities. We need more affordable housing. And we need to be able to look at ourselves and say, have we done everything we can to help this person live a good life? Because if we haven't, then too many people out there are going to pursue maid when they're really dying of poverty and not because they have some incurable.
 
21:00
uh... intractable pain or illness suffering from so i've talked to people who like uh... madeline and scarlet rose i've done stories about them who there's treatments out there that could help them you know live good lives but they just don't have the the resources to afford it and this is when you know becomes troublesome because you get people like them who are then
 
21:30
So that's a bit of the issue I have with it. We, I think, when we have legislation like made and when we have assisted suicide, we need to ensure that we've done all we can to help people live good lives before we make that an option for them. And so I don't think that's happening yet. And yeah, it is a contentious issue for sure. But.
 
21:58
I know a lot of people will have different opinions on that, but I really think that it comes down to doing more to help people live good lives. Absolutely. What I'm seeing is, you know, I sort of dig into the issue of medical assistance and dying, is some of the optics, because I'll read a story from the BBC or something that's overseas, and the headlines are literally, Canada is killing poor people. Yeah. It's almost...
 
22:25
It's almost like they're saying that Canada has gotten eugenics back in place. Yeah, and you know, there's lots of... Canada's getting a bit of a reputation from that, and this idea that we are... You know, Justin Trudeau kills disabled people. You know, that's obviously... they exaggerate for the headlines. There's a lot more to the story. But you know, I have talked with many disabled people who do see it as eugenics.
 
22:53
And because, you know, if the government hasn't helped them get the treatment they need or help them, you know, find affordable housing, but they are helping them kill themselves, well, I mean, it's totally understandable how someone would not feel good about the government in that situation. So it's difficult because you have to balance the fact that May does have a place in certain cases with the fact that...
 
23:22
In other cases, it can be a dangerous thing because people out there could still live good lives just if they had the support they need and they don't at the moment. So, yeah, and Canada's reputation I think has taken a hit as a result. Now, what do you think about, I mean, we're talking a lot about accessibility and finances and how like...
 
23:45
maybe throwing money at problems helps them go away. I think it does to a degree, but we're still at the same time dealing with other prevailing attitudes when it comes to disabilities or developmental disabilities. How do we foster that positivity or that change within the community at large? Well, I think education is such a big thing, for one. I've been in the CLBC Community Council that...
 
24:14
you know, I'm involved with. We hold and have held community events where we've invited policy makers, local MLAs and counselors and MPs, and, you know, several of them have come and they haven't had any idea that the community living movement exists. They haven't had any idea about the issues affecting people with developmental disabilities. They never really had any interaction before with people with developmental disabilities. I think the biggest key to changing attitudes is...
 
24:43
educating people and also having just coming together as a community, having events, you know, celebrate community inclusion and where people with disabilities and people without disabilities are interacting. And then you see, you know, this person may have Down syndrome but they're still funny and they're great to be around, they're a kind person, they have wants and needs and goals and wishes, they have strengths and weaknesses. When you don't have that type of direct interaction, I think
 
25:13
people are more likely just to see people based on their disability and just to think oh that's a disabled person, that's not like Kevin and Kevin who loves watching you know uh Marvel movies and stuff. So I think education is key, just community involvement and inclusion is key as part of that too. Because it's true you know money can do a lot but it can only do so much and I think we need to um.
 
25:41
really do more to get people together in the same room and to bring people together. And that's something that changed my life too when I was younger, you know, just having that interaction with my cousin. You know, I saw him just as my cousin first and not, you know, the disabled guy, the guy in the wheelchair who everyone else saw. And so I think that is something I'd really emphasize.
 
26:06
Yeah, and to your point, I haven't been working for DDA forever, and I don't have a lived experience when it comes to disability, so after being here for a few years, it is that attitude of they're not the disability, they're people before that. I've taken 100 clients to a Whitecaps game, and they're having an amazing time. Exactly.
 
26:30
you know if we win when when the elections are here we get them on voting they understand the issues they know what bothers them they know what sir what needs to change yeah and you know there's so many ways people can be similar in ways they can be different disabilities just one way you know different disabilities is just one thing uh... you know this person may have a disability and i might not have a disability but look we're both interested in the same movies the same sports we have a similar sense of humor it far outweighs the fact that you know
 
26:59
one person might have a disability and the other doesn't and i think we read we really need to get past which was still acknowledging you know that uh... disability does change someone's experience in society we really need to try to do our best to to move beyond that and uh... just to see people as humans absolutely and it doesn't you know i think disability doesn't have to limit exactly like
 
27:28
You seem to have a totally switching gears. You got a keen interest in World War II, I guess. You wrote a piece about Vimy Ridge. Yeah. Why did you write that piece? Well, you know, I've always had a general interest in war, particularly the down in the trenches combat aspect of it. And it's not because I'm some sort of lover of violence. It's actually because I'm very interested in the ways that people can persevere.
 
27:56
and work together to overcome the most extreme experiences and the most extreme circumstances that you could possibly find yourself in. So with a situation like Vimy Ridge, you had people from different areas of Canada, never met each other before, forced into the most pressing, challenging situation you could really find yourself in. And they found a way to persevere.
 
28:25
and to succeed in the face of great adversity. And I look at that as an example of, you know, around the time when I wrote that piece on Vimy Ridge, Canada was going through a period where there was a lot of division and a lot of talk about how polarized we were becoming. And yet I look at an example of like Vimy Ridge and it shows that when we come together and work together, you know.
 
28:49
our ability to thrive off one another and to succeed as a team far outweighs any differences we have. And so applying that to advocacy, you know, I really always believe that we are more powerful together. And that's why, you know, I try to collaborate with everyone I can. I try to be supportive of everyone out there. And I just really encourage people, you know, work together.
 
29:13
don't be divisive, we're in this together and are stronger together. And I just look at Vimy Ridge as an example of that and something we can learn a lesson from even all these years later. I think that's well said. What more do you need to say? Anything else to add today about disabilities in general and advocacy? I just want to really stress the need if you're going to be an advocate.
 
29:41
and you're feeling intimidated at the idea of going to talk to an MLA or writing a letter to someone or being part of a campaign, it can just start with speaking up to your family and friends. It can start with speaking out to your colleagues or telling them about an issue and that people with developmental disabilities are still excluded in a lot of ways in BC. It doesn't have to be some grand thing.
 
30:11
And just, you know, persist because when we keep the pressure on, that's when we make the biggest difference. And just one more thing I want to say, and I know DDA is involved with this too, to the listeners in Vancouver, the second phase of the city's accessibility consultations will be held in May. I think it's May 27th or so. But if that's something you're interested in.
 
30:39
in participating in it's another way you can be an advocate so uh... if you look online there will be more information about that soon and uh... encourage you to participate and you can also just be a keyboard warrior how do people find exactly yeah be a keyboard warrior go to if you want to check uh... my if you want to see examples of what i've written you can go to spencer v dot c a uh... you can also go to spencer
 
31:04
And you can also, if you don't have a Twitter or an Instagram or Facebook, think of starting one and think of speaking out about the issues you care about. Because your opinion does matter and it can influence what happens. So speak out and make yourself known. Your opinion counts. And I think just one final point, which I've made this point on many podcasts, is that we're not really just speaking necessarily for the disability community.
 
31:32
we're speaking for everyone because at some point in our lives, whether cognitive or physical, we're going to need assistance, we're going to need support, we might need that funding or policy in place. Exactly. This is for everybody. Exactly, it's for everyone. Inclusion benefits everyone, accessibility benefits everyone. No one loses because of this. That's why I think it's so important, even if you don't have a disability, to be an ally and to support greater community inclusion.
 
32:03
You have been listening to DDA's Encouraging Abilities podcast. Our guest today has been Spencer Van Vlaaten, as you can see, is a great and outspoken advocate for the disability community. Spencer, thanks for joining us today. Thanks so much. I really appreciate it, Evan.
 

Roshni is a Self-Advocate with a Mission to Feed!

Roshni Kashyap was born to make food. The young woman with Down syndrome started a chutney business and is poised to launch a cookbook. However, she has many other talents and her whole life to explore them. Including publishing a book of poetry. Available on Amazon is Don't Forget You're Beautiful.
 
TRANSCRIPT
 
Roshni is a Self-Advocate with a Mission to Feed!
 
00:04
Hello and welcome to another edition of DDA's podcast, Encouraging Abilities. I am your host, DDA Communications Manager, Evan Kelly. Now lately we've been talking a lot about inclusion and accessibility with a variety of interviewees, but today we're chatting with a very interesting young lady, her name is Roshni Kashyap, to be clear, and I got this from your website. She likes to be called Rosh for short. So that's so much easier for me. Now Rosh is a self advocate with Down syndrome.
 
00:33
who is building a chutney empire. Food is in her blood. She's been cooking with her mom for as long as she can remember and completed the food service careers program at Vancouver Community College. Since then has launched three different chutneys and even wrote a book on her. Now on her website, she says, and I really like this, they say I have Down syndrome, but that doesn't get me down. That's such a wonderful outlook on life. Welcome to the podcast, Rosh. Thank you.
 
01:03
So tell us a little bit about how you started being involved with cooking. I had a passion of cooking since I was a little girl. And ever since then, I've seen my grandmother and my mom, like, be in cooking. And that's how I actually loved cooking. Now, do you come up with your own recipes? Are they somewhat sort of passed down from family members?
 
01:28
Actually when it comes to um, my chutney business, I actually had some help come up with my recipes Can you tell me a little what how do you settle on the final ingredients of these recipes? I'm every ingredient actually um, so I do get it from a wholesaler and sometimes I have at home Mm-hmm. Yeah, like I get things in bulk sometimes even the crime berries
 
01:56
and cranberries. And so how many different chutneys do you sell right now? At the moment, I'm thinking of like a backseat of that because I'm going to start on a different vegetable also in the food category. Oh, you're gonna do something different other than chutneys? Yes, that's right. What do you gonna produce? Actually, I'm going to be producing a recipe book.
 
02:25
Oh, wow. A recipe book. So how many recipes are you going to include in that? At the moment, it's 30. I am going to add more. Well, 30. That's a lot of recipes. I don't think I could come up with 30 recipes or ideas to cook with. So are you as what you're saying is people can't get your chutneys now? Is that the idea? I think it's seasonal at the moment. And it's been a while since I made the chutneys. Okay.
 
02:53
Is there any still available or should we just wait for the recipe book?
 
02:58
I'm you can do a bit of both as and you can contact rosh's chutneys Let me know if you're interested in some and then I can make according To whoever wants. Oh, I see what you mean. Okay, so and just to be clear that's rosh's chutneys calm rosh's chutneys calm and all the contact information is there so that sounds really really good
 
03:25
And so this cookbook, what kind of recipes are you sort of focusing on? Is this, you are Indian, so are the recipes in this new recipe book going to focus on Indian cuisine, or are you going to branch out a little bit? It is going to be like international cooking, actually. Oh, wow. Can you give us an idea of one or two of the recipes? One of them is a sweet dish.
 
03:55
Indians read this and one is translated to says sour potatoes. Sour potatoes. That sounds good. It's I know a mashed potato dish that involves a lot of sour cream. Is it that kind of thing? No, it's a Indian style type of cooking. Wow, that sounds good. We will definitely get a copy of that book here at DDA. When when are you expecting that to be finished?
 
04:23
Actually, that's going to take a little while for it to get up and running. Once it starts up and running, then I will let you know for sure. Absolutely. Then you could like sell it on Amazon or something like that where people can print it off and you have the service they can bind it for you and everything like that. Or are you actually trying to publish this and get it into stores or something? As of now, I have it as a PDF form. Soon I am going to have a physical book.
 
04:52
Hopefully that'll be really great So you've mentioned as well on your website that your sister helps you out a lot is so she's still helping She's still helping you a lot with your chutneys and your cookbook She is helping me. Yes, she helps me a lot That's excellent. What about your parents? I know they've been very very supportive of your cooking too, right? Yes, that is true They have been very supportive of my interests and in the food world
 
05:20
Well, it sounds like you're really doing some great stuff here. Now you also mentioned on your website that you try using local ingredients as much as possible. Is that really important for you? That is very important in multiple ways. Like, um, that also helps benefits when it comes to, um, the spiciness cycle involved in the food. And it's really, really good stuff that I'm providing.
 
05:48
and you really want to focus on healthy ingredients too, yeah? Correct. That's excellent. It also mentions you were, I don't know, sort of change the subject a little bit here, it mentions that you're in UBC. Are you still at UBC or are you finished there? Actually I graduated from UBC. Amazing. What were you taking? I graduated under Film and Theatre.
 
06:18
film and theater. Yeah. So you're doing a lot of different things here Raj. You're cooking. So are you doing something with the film and theater as well in your life? I do have a YouTube channel. So I put whatever I feel like on it.
 
06:38
Yeah, I noticed that I looked at it a little bit. So you've got some food stuff and a bunch of other different things. So are you hoping to get into like film direction or acting or something like that? I don't know yet. I haven't figured out my career path yet. That's a hard one to figure out sometimes. Yeah.
 
07:03
Now, I know you've got this recipe book coming, but you've written another book, haven't you? My very first book was called Don't Forget Your Beautiful. That's actually on Amazon at the moment. And that's called Don't Forget Your Beautiful? Yes, that's my poetry book. Oh, wow. So what do you... tell me a little bit about your poetry.
 
07:31
I used to write poetry until I got help to, I've been writing, written a lot of poetry. And I had it all with me. I don't know, one day a friend of mine just took my poetry and helped me turn it into a book with paintings and everything. Now, did you do the paintings and the illustrations yourself? The illustrations, yes, but the paintings is now a friend of mine.
 
07:58
What do you know when it comes to poetry? What do you like to write about? Sometimes about love, sometimes it was something funny, something that makes you feel happy. And sometimes it may just question yourself as a mixture of everything. A mixture of everything. Speaking of mixtures, let's go back to chutneys because I'm a big fan. Can you take me through the process of making one of your chutneys?
 
08:28
The thing is, a true chef never shares her secrets. Oh, yes, I guess that is quite true. So, OK, I won't I won't ask you further to divulge your your your chutney secrets. I was not about ingredients, but is there a sort of a process you just in terms of the cooking, is there cooking times that are important to anything like that?
 
08:56
like um cooking is my passion and i do it i cook out of love and when i can do the labor of doing it well it's worth making cranberry chutney because chutney is in my background cranberries on bc that yeah i thought what the heck let's make something yum yeah the words certainly are known for our cranberries our cranberries out here aren't we yes um
 
09:23
I've also noticed on your Instagram page that you have a doggy. I'm a dog person. We love our dogs over here at BDA. What kind of dog is she? He is a Labradoodle. Labradoodle. What's his name? Buddy. Buddy. Oh, that's great. So when back to UBC, how long did you go there for? I was there for five years. Five years. And so have you got a degree in film studies and theater?
 
09:53
I did get a certificate of completion. Okay. That's amazing. Did you have a lot of fun there? Oh, it was amazing. I love being on UPC campus. It was very worth it. Oh, wow. It sounds like you have an amazing life going here. And then it doesn't sound like Down Syndrome has been much of a hindrance for you. I don't let that get me down. As in, I don't want people to see me as that.
 
10:22
If you see me as a person that's good enough. And so why is being a self advocate important to you? People need to hear the voice behind the girl and the girl behind the mask of having Down syndrome. And what would you what what sort of message would you like to send to other self advocates?
 
10:48
That's a good question actually. My message would be if you have some sort of disability, don't let that get to yourself and make sure that you are self-aware of what you're doing. If you're passionate about it, just go for it. And if you have a voice, run with it. That's excellent. Very, very well said. So where do you see yourself in the next five years?
 
11:18
Oh, that's a good question. I don't know where I think myself at the moment. I have no clue. Maybe I'm hoping somewhere in the film line or in the music line, one of the two. Okay, so what I'm a musician myself. So what what is it about music that you do? I actually write my own rap songs. Oh, wow. Really? Okay. Yes. That's amazing.
 
11:47
I have recorded a few of my rap songs but not too many yet. Okay, are those on your YouTube channel? No, not at the moment. Yeah, that's uh, making music is an interesting process. I've been doing it for many, many years. Wow. So anybody that can get up there and rap, I doff my hat to you. That's amazing. What do you rap about?
 
12:11
Um, um, I've got so many rap songs that one is called super solo. One is one is about, um, I don't want to name drop brand away chip, but I'm just gonna call it chip song. Chip chip song. Now you say you want to name drop as in who when I say that it's actually called the Pringle rap. Oh, that chip song like as in as in potato chips. Yes.
 
12:39
Here's a fun fact, did you know Pringles are made with mashed potatoes? I did not know that actually. Now you know. That's how they get them all the same shape. I had no idea about that. Interesting cooking tips. Anything else to add, Rosh? It sounds like you're a really, really busy person just having fun with life. Fun fact, there's another part of my studying that I have been doing lately.
 
13:06
And it's an online program that I am doing. An online program? Yes. Okay. What would that be? Vancouver Island University. And it's an entrepreneurship program, online program I'm doing. An entrepreneurship program. Oh, you mean like, oh, you mean for studies?
 
13:31
For studies, I'm just going to be close to my cookbook. Oh, that's what you do in your cookbook too. Oh, that sounds great. Well, I got to be honest, we're looking forward to that cookbook. We will definitely order a few and we'll like we we here at DDA. We run a bunch of group homes for for for adults and community living. And we would be happy to distribute that book to all of our group homes. That would be a good thing to do and get your recipes out there. Yeah, that's true.
 
14:01
like distribute maybe my poetry book. We can do I will help you do that if that's available online and if you you know you and I are in contact you can send me the links I'd be happy to publish that on our social media channels to get your name out there that would be easy. Yes you can also find me on my social media platforms. Yes are your is your social media connected to your Rosh Chutney's website?
 
14:30
one of them is but not all of them are okay we'll have to all have to uh... i know i know i've seen your youtube channel but i've got a i think i've got a are you on facebook and twitter as well uh... it's not on twitter but it is on facebook okay we will we will find you there and and is is is your your first book available on the link there my very first book will be actually on
 
14:54
On Amazon, except I don't forget your beautiful, my poetry book will be on Amazon. If you just tap up my name. I will do that. And I'm going to, I'm going to put that on social media right now. Right. I'll write as soon as we're done here. Awesome. Well, Roche, it's been really great having you on the show. I think we've covered a lot of bases here. Our guest today has been Rochne Kashyap, a self-described foodie who has Down syndrome.
 
15:21
but that doesn't seem to stop her at all. She started her own chutney business after completing courses at Vancouver Community College and at UBC. You can still possibly order some chutneys on her website and that's www. She is about to publish her first cookbook, so we're anticipating that. That's gonna be awesome. So, Rosh, thanks again for joining us.
 
15:47
Thank you very much. Now you have been listening to DDA's Encouraging Abilities podcast. I'm Evan Kelly. See you next time. All right.