Encouraging Abilities Podcast

The federal government wants to cut 15% in spending for certain programs and services. Advocates are concerned about people with disabilities losing their jobs before anyone else. We chat with Rabia Khedr, National Director of Disability Without Poverty, about disability employment and the new Canada Disability Benefit.

Navigating this often troubled world can be difficult. As an Autistic person who sees things differently, it can be an obstacle course when it comes to even the simple things like making friends. To build herself up and understand her place in the world is the author and person with autism, Keara Farnan.

ARFID - Avoidant/Restrictive Food Intake Disorder can affect neurodiverse populations more often than typically developed individuals. In this podcast, we chat with Lauren Hershfield and Elise Fairey, who lead a team of experts in diet and nutrition with their business “The Feeding Group”. Their team supports families who have the disorder to lead happier and healthier lives. 

Making a movie is tough. Making one about one's life experiences through the lens of autism, even tougher. We caught up with Austin Wolf, writer and producer of an upcoming independent film, Wally Jackson and the Probability of Love and Car Accidents, which he hopes adds to the greater understanding of the neurodiversity community. And, you know, reaching for your goals and all that...

From writing blogs for the Canadian Down Syndrome Society to planning an autobiography, CDSS Awareness Leader, Paul Sawka does it all. We caught up with the staunch self-advocate in Calgary.

Receiving the news that your unborn child has Down syndrome can be a shock to parents. In this Encouraging Abilities podcast, we chat with author Adelle Purdham and her emotionally driven book about what it's like as a parent raising a child with the condition, and how most issues are created largely within ourselves.

Not your typical high school students. Jora Singh Nahal and Inbal Tzafrir are motivated and atruistic. The pair of award-winning students are developing applications to benefit the disability community.

Mike Shoreman was a regular guy running a paddle-boarding business in Ontario until Ramsay Hunt syndrome struck him down and forced him to re-evaluate his life. Since then he has become a staunch advocate for the disability and mental health communities, showing how overcoming adversity is in all of us. TRANSCRIPT Evan: so welcome back to DDA encouraging abilities podcast. I am your host. DDA communications manager Evan Kelly, today, we're not just talking about cognitive disabilities, but mental health as well adaptability, resilience and overcoming adversity. Joining me to talk about all that, is Mike shoreman. Now here at DDA, I've been following mike on social media for some time. He is a mental health and disability advocate. Now, Mike is and was a typically developed, developed person and a coach, a paddle boarding coach with paddle Canada, until he was struck down with what's called Ramsay hunt syndrome back in 2018 now, the condition led to severe physical impairments, including loss of mobility, hearing and vision, chronic vertigo, facial nerve collapse, all of this culminating into a mental health crisis. Suffice to say, it was very life changing for Mike. Perseverance is key. And by 2022, Mike became the first person with disabilities to paddle across all of Canada's five great lakes. So Mike, it's so great to have you here today. Mike: Great to Great to be here with Evan. Thanks for having me. Evan: No problem now, son, I don't want to give everything away, so I start this with a lot of my podcasts. So tell me a little bit more about Mike schorman. Mike: Oh, well, I am a keynote speaker, consultant and advocate. I work with organizations, academic institutions, government agencies, schools to help empower their people. And you know, help, help empower people and improve mental health, education and disability education. I work a lot with human connection. We learned a lot of things out there on the Great Lakes. It wasn't just me who went across them. It was a whole group, a whole team that I built to help support me, so we had to learn how to connect with each other to do these five marathons. But yeah, no, I'm I am just a regular guy who went out and did a big thing, and that was made possible by the support of a lot of incredible humans. Evan: Now, Ramsay hunt syndrome, that that's not something that comes up very much. I didn't even know it existed until I started to follow you. Had never heard of this condition. So what is it and how does it affect people? Mike: Right? So it's a neurological disorder, condition. It is activated. So what it is is essentially, if you've had chicken pox, chicken pox, once you've had it, it stays in your system, and it remains dormant. So many of us had chicken pox when we were kids. I did I had, I had a very mild case, me too, when I was Yep, and, and then it just stays in your system, and, and it can be awakened later in life as shingles. And, you know, both my grandparents had shingles. Shingles is usually you get shingles in your in your later stages of life.   Evan: Well, ironically, ironically, I had shingles a number of years ago, probably about 20 years ago, when I was fairly young, and the doctor figured it was stress related, but it did happen to me. Mike: Right, connection, right? So the Herpes Zoster virus, which is chicken pox, it can be reactivated as shingles when brought on by stress and and so what Ramsey hunt syndrome is is it is shingles, but very specified to when it attacks your eye or your ear. So in my case, it attacked my ear. I ran myself into the ground and wasn't taking care of myself. As I was an entrepreneur and I was running my paddle boarding business, and and ultimately, I worked myself into the ground and wasn't looking after myself well enough. And then, and then, it affected many different things, because it affected my vestibular system as it affected my ear. So Ramsay hunt syndrome can be mild to severe. In my case, it was very severe. The mayor of Toronto, the current mayor of Toronto, Olivia Chow she she had Ramsey hunt syndrome, I think back in 2000 Then eight she and she had to publicly announce it, because, because facial facial paralysis is part of it. And as being in politics, she had to make an announcement that this is not a stroke. This is what this is. And then a couple years ago, Justin Bieber announced that he had it and he canceled his entire world tour. Evan: Wow, wow, and so. So for you, what were some of the long term effects? Mike: So, what is a chronic condition? So even now, you know six, what are we were five, seven years later, even now, there are days where where my energy is low, or the barometric pressure changes, and I can feel it, or I get tired, and you can tell when my walking or my or my talking or with my speech, But no, I essentially lost my mobility, and I had to work with a vestibular rehab therapist to reprogram my brain ways to walk in a straight line. They said that I would never get back on the water, that I would never paddle board again. I had to go for, you know, audiology tests and vision tests and and MRIs to rule out brain damage. So, no, it was a, it was a very big adjustment to to a new normal. Evan: Yeah, and then, so, you know, you're, you're a paddle boarding business, you're obviously outdoorsy, active kind of guy. Again, back to what I said earlier. Was typically developed. How, how difficult was this, to accept that life just suddenly changed? Mike: No, you know, when you acquired, you know, so many Canadians, so many people acquire disabilities later in life. I am just one of them, but it seems like there were so many all at once, and it was incredibly overwhelming. And you know when you lose your when you go from standing on a paddle board teaching people for 1012, hours a day and working for 17 hours a day, to not being able to walk and not being able to drink out of a cup, you know now you have to use a straw suddenly. And you know, when you have a shower because of the vertigo, you have to sit down in the bathtub rather than standing up. You know, all of a sudden, I lost my business. I lost the ability to earn an income. I lost my social life, which is hugely important with connecting with others when we're struggling. I couldn't I couldn't go out. I couldn't see people. So my world went from being very big to very, very small and and ultimately, you know, loss of independence, loss of social life, loss of identity in the world that I had created. And so I just didn't recognize, like, like, like many people who go through through that later in life. I just didn't recognize who I was anymore. Evan: Well, when you say later in life, though, that you weren't, I mean, how old were you when this happened? Oh, well, 35 Yeah, it's not very late. Mike: No, no, no, yeah, no, I Yeah, no, I was still, I guess still. Evan: Yeah, that was same for me when I, when I mentioned that I have shingles, I was probably around even like 28 I was that right? That young when that happened. So I guess we're poster children now for the fact that that can happen, not just later in life. Yeah. So, yeah. So was there a turning point when you realize that mental health needed to be the focus for you? Mike: It's dealing with physical stuff is one thing, but there's that whole mental health side of it, absolutely so a big focus on my recovery was placed on physical rehabilitation, but not so much with the mental Health and I was, I ultimately, what it came down to was that I felt like I, you know, I was, I was being looked after. And after months and months and months of this, I felt like I was a burden on other people, and I didn't see, you know, when we, when we go through a. Shift in, in our physicality and in, in, in how we operate and how we, you know, do day to day life. You know, it's it's a, it's a, it's complex. And I wasn't coping I didn't have the coping strategies in place at the time, and so ultimately, I ended up going for a stay in a mental health treatment facility, and it was there that I was set up with counselors and therapists, and I don't advocate for it with everyone. But in my case, it did work. I did go on medication and and it did, it did work well for me and and on the other side of receiving treatment, and, you know, coming out of there with, you know, coping strategies and tools that I could implement. That was when I decided I didn't want other people to ever feel as alone or as hopeless as I felt, and Evan: so suffice to say, your adverse, your advocacy that you do right now in life is a direct result of what happened to you. Absolutely yes, yes. And so this, so this inspired you to become a mental health advocate. And so, awareness and support, I guess, is your main goal is that is, I guess is that kind of your full time job? Now? Is that what you do?       Mike: Yeah, so full time I work, I work with corporate I work with businesses and corporations. I do a lot and and schools, government agencies, nonprofits. I do a lot of conferences and and I work most. Most of it is stress management and burnout production, because that's what happened with me. So you know a lot of organizations who, who have, you know it's competitive out there. So a lot of people who, who have employees in industries who are ambitious and highly competitive. They look at my story and they see, they see the these. They see the face of of what, what can happen, you know. And, and then, and yeah. So I get to work with a lot of incredible, incredible people, and that is, that is my full time, my full time job. Evan: Now, when you look back and then you look at your life, now, does it seem weird that you're doing this rather than your business, your other business, I mean, your paddle board business. Mike: Yeah, no, it's, it's funny because I get to, I still get to do it. I get to do depending on the time of year and where I am. I've done team building exercises, so I still get to do that. So you know, i

Roz Maclean is a wonderful artist who hails from the Comox Valley. She has turned her passion and vision into a successful line of children's books that teach inclusion and diversity. www.rozmaclean.com    TRANSCRIPT   Evan: welcome back to DDA encouraging abilities podcast. I'm your host. DDA communications manager Evan Kelly, today, we're talking with Roz McLean now Roz is a local award winning author of children's books that deal a lot with diversity, communications, emotions and inclusion, which, of course, is right up Didier's alley. Roz is also a visual artist and illustrator and an educator in the Comox Valley here in British Columbia. She likes to investigate ideas of human nature, diversity, relationships, community, mental health, interconnection and the natural world through an anti oppressive and LGBTQ and inclusive feminist lens. They've written a couple of books illustrated even more, in addition to having a portfolio of artwork that covers abstract ink drawings animals, one set of works called insufficient arts art, rather which focuses on British Columbians with disabilities. That and more can be found at Roz mclean.com and I'll say this a couple of times, it's Roz with NAC mclean.com Roz. Thank you so much for joining me today. Roz: Yeah, thanks so much for having me now. Evan: I always begin my podcast with you know, people I've never met before. So tell me a little bit about a little bit about yourself? Roz: Well, yeah, I'm a children's book author, illustrator, and I'm on Vancouver Island in the Comox Valley on the traditional territories of the Comox people. I have a dog. I live here with my husband. I like to go in the forest, yeah, I don't know. It's, it's, it's funny to try to sum yourself up. Evan: I mean, you, you obviously do a lot of art. Art is your is that you're like, the number one passion in your life. Roz: Ah, I think, I mean, it's definitely been a common thread throughout my life, and it's funny, I guess when your passion becomes like your job, because it is my passion, and now it's also my job. So it doesn't always feel so passionate, but it's been a really common, consistent, yeah, thing in my life that I've always turned to and enjoyed doing is that something you studied in the past, I'm really lucky that I grew up in a really, like, arts and rich environment with my family. My parents are both artists, and my mom worked at like, arts umbrella when I was growing up, so do have classes there. And I grew up in North van as well, and they had, like, lots of enrichment stuff going on in their school district. And then I also went to Emily Carr and SFU for a little bit. I didn't finish up degrees there, but I was there for a little while. And then, yeah, and then I'll just take classes, like, here and there. It took, like, infection course one time. So I'm always learning, yeah, and because, it's because Evan: I look at your art on your your portfolio on Instagram and stuff like that. And it's, it's, it's, you run a lot of different styles, and it seems like quite a bit of different mediums. I just love your your ballpoint pen work. It's really, really detailed and very realistic. So you've got some obviously, influence from all over the place, and not just one particular, particular medium or style. Roz: Yeah, yeah. All over the place is a really great way to describe it. That's how I feel a lot of the time. I'm very much like, Oh, what about this? They're like, Ah, I could do that. And it's very like, kind of counterbalancy, like, I'll work on something really detailed for a while, then I'll be like, Oh man, I really need to, like, feel like I want to do something more loose and abstract. So yeah, all over the place is a great, great way. Evan: You mentioned your your work. It's your passion has become your work. So is this a full time thing for you? Roz: Whether books, yep, yep, I'm author, illustrating is what I'm up to these days, which is amazing. I don't know. Not many people can say that that's that's quite an accomplishment. Yeah, I feel really lucky, very grateful. Evan: So what inspires you? Roz: Definitely, like life experience. And I think, like, I have a lot of big feelings about like the world. Evan: I mean, the election just happened in the US. I don't know when this podcast will be coming out, but it happened, like, a couple days ago and like, so you know that it brings up all these big ceilings, and it can be really hard to know what to do with all of that, and to feel very Roz: Yeah, to for me, I can get kind of like, stuck. And and so art isa place to kind of put that energy and all those feelings and kind of the dreams that I have, and I know many people have, for like, hey, things could be different and better. So I think I'm really inspired by by envisioning just better possibilities. And I'm also really inspired just by like ideas of connection, like connection to nature, like I am, where I am right now. There's like, tons of forests and ocean and wildlife and everything, which feels really great, but yeah, nature is also always been something that I found really inspiring and awe inspiring, yeah, and I've inspired also by other artists. Like, it's, it's just really cool to see what people do. And it's always, yeah, I'm, I'm often blown away by other artists too, and it's very invigorating. Evan: Yeah, we're, we actually run a very robust art program through DDA for for a lot of our adult clients, and I'm just, they just took part in possibilities. Now, possibilities is another organization here on the lower mainland, and they do an annual art show and sale every year inclusion. They call the inclusion art show and sale and, yeah, stuff our clients come up with, and other people with disabilities, and specifically for the disability community, the stuff they come up with just absolutely mind blowing. And it's, and it's, obviously, it's very affordable art, and it's, you know, I would always encourage people to come to DDA website. We've got a lot of our artists showcase there as well. Roz: So that's really cool. Yeah, absolutely. Now your books deal a lot with inclusion and diversity. Why is this so important to you? Roz: Um, I think the idea of inclusion and, yeah, diversity, they've been a really, like, core care throughout my life, and, like, my family's life. My older brother has an intellectual disability and and Yeah, and so we him, and I went to school in like, the 90s, and inclusion was like a very new idea. And so I really watched my brother and my family, like navigate that and do a lot of advocacy work, and yeah, to just see the bumps that would come up and the limits and the barriers that were in the way to inclusion and acceptance and to just kind of come up against all these, like old ideas. So that was just something I think that's like very core to, like, all of my memories. And then I also ended up working in schools as a special education assistant and intervener. And intervener is someone who works with students, students and individuals who are deaf, blind and and yeah. And that was another area where I just got to see, like, all the possibilities that I encountered with the students I was working with, yeah. Yeah. And then also, kind of, like, what structures are in the way in those school experiences that I came across. So I think that, like throughout all of that, and throughout just like what I've been like, you know, reading and learning and everything I just, I have this, like, very core belief that, like, every person has value and and diversity is very valuable. And these kind of, like norms of,of like abledness And like, just expecting people to be one way that's like, this super productive way, like, it's just, it's not good for anybody. But also, you know, I see how many people get left behind andand aren't cared for under that scenario. So, yeah, it's just like, it's in my heart. So I just, I feel it and I think about it. Evan: Well, that's great. So what is the inspiration? You know, we'll get right into your books here. Like, what is the the inspiration behind more than words, that's, that's, that's more of your newest, newest one, isn't it?     Roz: Yeah, yeah, that's the most recently released book I have. And so the full title is more than words, so many ways to see what we mean. And the inspiration for that really came from working in school. I worked in vancouver public schools for 11 years. And yeah, like I said, So supporting students with disabilities and who are deaf, blind and so communication was, like a very recurring theme like that was especially students who are deafblind. Part of that role was figuring out communication systems that were like, especially for how those kids were interacting with the world, andyeah, and then so. And then the other part of that was like, communicating with the rest of the class and the rest of the school and the rest of the staff about, like, okay, like, this is how the students communicate. And so there are the specifics of that that are unique to whoever is, you know, using alternative communication. But then there are also those, like, general conversations. It's like, yeah, like, we don't just talk by talking. We we communicate in all these different ways, and that's really normal, like we all do that. And it's also, you know, normal and common for there to be people who don't communicate through talking. And then part of it too was Yeah, so I really wanted to normalize that, and then I really wanted to provide something for educators who are in those space, who might not feel super confident to like lead those conversations all on their own, like they might not feel like they had all the knowledge or tools, but they might still want to have those conversations. And of course, you know, like a teacher might not have a student who is non speaking in their class, but maybe there's students in the school, or just in their community, there's people, and so they want to hav

Inspired by her son, a Langley mom creates a book to help people with cognitive delays navigate daily life.    TRANSCRIPT Evan: Welcome back to DDA. Is encouraging abilities podcast. I am your host. DDA, communications, manager, manager, Evan Kelly joining me in the studio, which is, of course, is always a nice change over the phone. Is Stevie artemenko, am I getting your name? Stevie: Very, very close. Yeah. Artemenko, artemeco, close. Evan: Stevie is a local mom who has three children, each with some various health issues. She also works as a special education assistant. Is a writer and an advocate for the disability community. On the writer's side, she has produced a book to help with cognitive issues. Plan, sorry, to help people with cognitive issues plan and organize their days and develop life skills as they get older. It's called Life Skills, checks, checklists and guidance to help navigate everyday life. It is available on Amazon. So Stevie, thanks for joining me today. Stevie: Thank you so much for having me. I'm really happy to be here for sure. So I always start these off with my guests telling a little bit more about themselves your local so let's start there. Well before becoming a mom, I did a lot of traveling. I love travel, and then I worked in radio as a copywriter and doing voiceovers. And one of the radio stations that I worked at, I was a creative director, and I got shut down. Everyone got laid off. And so, yeah, yeah. And so I thought, What do I want to do? What's something I really want to do? And one of my bucket list things was to go work for a nonprofit overseas. So I ended up working for an organization called Crossroads, and I ended up in Fiji as a teacher, and I had no background in teaching. Didn't know what I was doing. It was like, here's your class, they don't speak your language, and that was how it started. But thankfully, I had a wonderful roommate teacher who helped me. Evan: So what were you teaching? Then, everything, everything, Science, Math, English as a second language? Stevie: Well, basically, I mean, when it came down to me, what I was teaching, I was just teaching basically English and some math. It was a grade three class, but it was quite funny, because clearly there was a language barrier, and the kids would just be like, Yes, miss, Yes, miss, and half the time, I don't think they understood anything I was saying. Evan: So what do they teach in Fiji? Or not teach? What are they? What's the language in Fiji? It's Fijian. Fijian. It's its own language. Yeah, Pardon my ignorance.     Stevie: No, no, that's okay. Um, so, yeah, so, and I only picked up a little bit of the language and but it was amazing. So that totally inspired me to come back and want to work with kids. And, you know, radio is really fun and great and all that. But it wasn't, you know, kind of inspiring me. And so I decided to go back to school to become a special education assistant, and that's where it kind of all started. And then, yeah, after my youngest son was born with all his special needs, then I quit all my jobs to focus on him. Evan: Yeah, right, right. So tell me a little bit about your youngest son then. Stevie: So I have three kids, and they all have health challenges. So my oldest is 24 and he's about to become a dad himself, which is really strange and surreal. Very happy for the first time. Grandma for you. Yes, yes. I was still like grandma. I like Nana better, but he had various health issues. He when he was a teenager, he was diagnosed with a congenital heart condition and a blood clotting disorder, so major surgeries, and it was really hard on him as a teenager and the family, and then my daughter, who's 23 was diagnosed with celiac a few years ago, so she's trying to navigate that, but she's on the road to becoming a registered holistic nutritionist, which is exciting, yeah. And then my son, Caden, who was the inspiration for this book, he was born at 25 weeks, at one and a half pounds. That's small, yeah. So he was considered an extreme preemie. He had major infections and very, very, very sick baby. So he was in the hospital in the NICU for about six months at Children's and Lions Gate. Evan: Can I ask you a little bit about that? Because, because that sort of aligns with my own life. I have an identical twin brother, okay? And we were born two months premature back in 1971 right? And so we were three pounds when we were born and given a 50, 5050, chance survival, yep. And it's, it's interesting, because my mom was a child psychologist at the time. And my father was a, well, he was a GP, but he was also, I don't know if he was a psychiatrist at that time, but he ended up finishing as a psychiatrist. And back in 1970 they Firstly, they didn't know my mom was carrying twins because her heart beats me insane. They didn't have ultrasound and stuff. Were that old. Old. But the interesting thing is that my parents brought a bunch of literate literature for it, because infants at that stage in the time you they're put into an incubator, and you weren't, you weren't able to touch them, yeah, and so my parents brought forward all this literature, but that if you are allowed to handle them even in the incubator, yeah, pardon me that they have a better drive. And I was just wondering, was that your experience Stevie: So so Caden was he was so he was 25 weeks. So at that point, his skin was so fine, it was like, almost like onion paper. So I wasn't allowed to even, you know, I wanted to stroke him and reach in through the incubator, but I wasn't allowed to do that because his skin was so fragile. So I could just tap him. And then it was three weeks. I had to wait three weeks before I was able to hold him. And they, I can't even remember the term that they used nesting, but yeah, so the first time I held him was three weeks after he was born, and amazing experience. But yeah, that was a part of the ritual to hold them. Because, yeah, they did thrive. They needed that, the warmth and the sound of their mother's heartbeat and touch, yeah. So, so important. So and it, it meant so much to me, and I think it clearly that's, that's part of the protocol now, yeah. Evan: And they Yeah. And then that was at Lions Gate hospital, and my understanding is the story went is that the they actually helped the hospital change their policy on that. Stevie: Well, that's how it was at children. So that's amazing that they were, they were instigators of that, because that's huge kangaroo. That's what they can kangaroo. Yeah, no, it was so glad that they did that, because to be apart from your child is excruciating, you know, especially when they're in the incubator and stuff. So to have that daily time with them was so important. Evan: so tell me a little bit about more, a little bit more about Caden's physical issues. Stevie: yeah, so he, so he was diagnosed super, super sick in the hospital. He ended up with a feeding tube, couldn't feed on his own that was removed after about a year, but then was later diagnosed with an intellectual disability, autism, mild cerebral palsy, hearing loss and a severe nut allergy. But wow, has he come a long way, and sorry, he said, Oh, he's 17 now, so he's almost an adult himself. Yeah, I think he's more ready than I am. Evan: That's always the case, right? I've got a 16 year old, yeah, just turned 16 yesterday, and I've got an 18 year old as well, who's now starting college for the first time. I need more time, yeah, totally. So then I stopped feeding him, so that's good. No more food for you. No no more growing so, you know, I guess we're both parents, so having all three kids with various health issues, that must have been a bit tough. Stevie: It was tough. I mean, there was a lot of times, you know, I was totally scared, lost, you know, felt like I didn't know what I was doing. But thankfully, you know, I did have a lot of support, you know, from the hospitals and their transition programs. And I really, I really, really learned to reach out and ask for help and know that, you know, I can't do this on my own. And you know, the days that I was, you know, crying or pulling my hair out or whatever, you know, those are the times when you you reach out, whether it's professionals or friends or family like that, to me is, you know, it helps you to be a better parent, and it's also self care. So if I, if I didn't do that, I don't know, I ended up about 10 years ago, I guess, well, more than 10 years ago, maybe 12 years ago, I ended up quite sick. I thought it was the flu, and it turned out I had severe pneumonia, and I was admitted to the hospital right away. I was intubated. I was in a coma for a couple of weeks. Oh, wow. And that was a big, big lesson for me, that I was doing too much, you know, trying to be there all the time for each of my kids and the family and just go, go, go. And after that, I really learned to focus on making sure I was okay, so that I could take care of my kids. Evan: Yeah, it starts there first, right? I mean, that's, that's something we talk about a lot here, and sort of try to champion that self care, even, even for our employees who are looking after people with disabilities, you know, for eight hours, absolutely that can, that can wear you down, wear you down. And that's how, you know, I I'm so fortunate. I feel, I feel blessed sometimes that, you know my kids, there's other than. Being them, being ornery and combative, it's I don't have to worry about a whole lot, you know, I'm very fortunate that way. Stevie: Yeah, I think it's so important. And I think the dynamic is changing that way, where, you know, people are realizing that, yeah, if I don't take care of me, I can't, you know, be the best for my kids or my family. So absolutely. Evan: And one of, you know, one of the, one of the problems that in the caregiving field is in DDA, and any other Association like that, like us, is actually finding people to do the job. And we see this dwindlin

Noam Platt is the founder of MakeGood, an organization in Louisiana specializing in designing and building devices for people with disabilities. We caught up with him about how new technologies are making it easier and cheaper to build an accessible world.

He moved to Canada about 20 years ago from the UK and never left. We chat with accessibility consultant Ramesh Lad who aims to make Vancouver Island accessible to all.   TRANSCRIPT   00:08 Welcome again to DDA's Encouraging Abilities podcast, where we chat about everything disability related. I'm your host, DDA Communications Manager, Evan Kelly. Now we talk a lot about accessibility on this podcast, how things can be done better to level the playing field for people with disabilities, whether physical or cognitive. Now that could mean adopting a universal design concept so that everything we build or create is done with everyone in mind. 00:33 Sometimes that's easier said than done. So we need consultants who navigate design beyond meeting building codes, because building codes doesn't necessarily mean it's accessible. It just means it might be relatively safe. So joining me today is accessibility consultant, Ramesh Lad, who hails from Vancouver Island. I came across Ramesh on an ex or Twitter story, if you're still there. So the power of social media is good. 00:57 And I was a person with lived experience. Ramesh started step-by-step accessibility consulting in 2018 and has been building his business ever since. So thanks for joining me today, Ramesh. Thanks for giving me the chance to chat. Thank you. No problem. I always like to start things like this. So tell me a little bit about yourself. So where do I start? So I'm basically originally from England. I moved to Canada in 2001. 01:26 And I came with the idea of just to live and work out here for about a year, just to get some different experience and to have a different sort of lifestyle. But 22, 23 years later, I'm still here and enjoying Canada, basically. My background is I in England, I worked with youth in schools. Before that, I worked in human resources. 01:54 And then when I came to Canada, my first job I had was with BC Paraplegics Association as one of their counsellors. And then from there, I've done various other jobs. Most recent jobs I've had is working with youth at risk here in the Covox Valley. I've also worked on the downtown east side in Vancouver when we lived in Vancouver. So my career history is quite varied. 02:21 My personal background is I was affected by the drug thalidomide, which is a drug given to expectant women to alleviate things like morning sickness. But unfortunately, the drug had an impact on the fetus, which left people with various types of disabilities, including limbs missing or short limbs. 02:51 And not everyone, sadly, had survived. So in the UK at the moment, there's about 400 people that were affected by thalidomide that are still alive. In Canada, I think it's just under 100 now that are still living and, yeah, living. Now, if you don't mind me asking, Ramesh, how old are you? I'm 62. Okay. You look younger in your photographs. 03:20 Thank you. That's good. It's amazing what Photoshop can do. And so, I mean, you know, just checking your profiles and things in your business website, what really got you interested in working with at-risk youth? I think it's just one of those areas I fell into. Like I said, my background was working with youth in England, but mainly in schools and colleges. 03:51 So when we moved to the Valley, a position came up, when we moved to the Colmocks Valley, a position came up which was involving working with youth at risk. And I'd already worked with adults at risk, as I was saying earlier, on the downtown Eastside. So this is just sort of following on from that, but specifically working with youth at risk, which is an area that had an interest in, especially as I've worked with youth in the past. 04:18 So that was it really, it was just more of a chance that came up here in the Cobox Valley where there was a program run called Blade Runners which is working with youth at risk to try and give them basic skills to allow them to find entry level jobs. So I was working with youth to sort of train them up to get into entry level jobs and then not just train them but also... 04:45 working with local employers and local companies to try and get them placed as well. So, but my interest came from my background. Oh, interesting. Now, so Vancouver Island is, you know, of course, a little bit detached from the rest of BC. Do you, how's business? How do you, do you feel like you're making an impact on businesses and design over there? I think I am. It feels like it at the moment. I'm quite busy with mainly educational establishments. 05:14 that I'm working with and I've done some work for a couple of senior homes and I've just started working with somebody who wants to improve their home for aging in place. So I think it's taking off. Businesses are a little harder to work with because I think there's the financial barrier that they feel might come up with what they need to do to make their businesses accessible. 05:41 I think the other thing is here in the Covox Valley, I don't know if you've been here in recent years, but in Courtney, a lot of the businesses downtown, the buildings are a little older, so they're a bit more difficult to make fully accessible. But I think businesses do try really hard to accommodate everyone. Trevor Burrus Now talk about, tell me a little bit about the cost. 06:10 making things accessible is that the cost really is somewhat negligible. And if you're thinking about a business where if you're a retailer, for example, or a restaurant, whatever, that if you're not making something accessible, you're turning away a big dollar. Absolutely. No, that's totally true. You are. Yeah, it's basically you're throwing money out the door because... 06:38 people aren't able to get in. And I think what we have to remember here is that people always think of disability or people with disabilities as being this very small percentage of the population. So they're looking at the big picture of, well, all these customers are coming in. I might only get one person in a wheelchair or one person with a learning disability or a hearing impairment. But in reality, what they're forgetting is that we've got an aging population here. 07:06 You know, worldwide we've got an aging population. Now that aging population comes along with various challenges of their own. You know, for example, mobility might be an issue, or hearing might be an issue, or sight might be an issue. So if you're making those accommodations, that population of people that might not ordinarily use your services are more likely to use them. You know, whether it's retail, whether it's entertainment, whether it's... 07:35 leisure and so on. So I think the cost, and again coming to the cost of it, it depends what needs to be done. If it's a new building, then the cost is, as you were saying earlier on, absolutely minimal because you can put those, you can implement those design features that will allow greater accessibility into place as the building is being constructed, which saves a lot of money. 08:05 And those things that they're putting in aren't huge. Why the doors? As an example, or recently I worked for an organization that works for affordable housing, and they were building units, and to make the units accessible, one of the things we looked at was putting support beams in the bedrooms. So in the future, if one of their residents needs a hoist or something, that could... 08:34 The hoist could be attached to that support beam and it is safe and everything else. But if you try and do something like that after the building is built, you're talking about quite a few thousand dollars to make that happen. Whereas when the building was being built, it was minimal, a few hundred, and that's just for the material. The labor costs don't even come into it because they're building this unit anyway. So it all depends on what level of... 09:03 you're talking about. New buildings, I would say you're actually right, minimal. Older buildings, it might be a bit more, but again, I would say the costs are huge. I think there's a lot of assumptions about what needs to be done. So having somebody like myself or one of the other professionals from the Rick Hansen Foundation look at things would give them a clear idea of the cost maybe not being as high as they're thinking it's going to be. 09:34 So with that in mind when you enter a building or someone I guess someone's house or something like that when it when it turns When it comes to making a sort of a report, what are the main things you're kind of looking for? Well, I start right from outside So whether it's a building or a house, you know, you're looking at it from the exterior pathway to the front door or to the entrance of a building and then 10:03 You know, you're basically walking the building, walking through the building in your mind and looking at every aspect of it. So for example, on a driveway or a pathway, you wanna make sure that it's level, it's easy to identify the path, it's safe. The lighting is good for nighttime. When you get to the front door, is it a level entry, are there steps? How easy is it to reach an intercom if you're... 10:33 going into an apartment building. So it's every little detail that you can think of that you're looking at. You're not just looking at, okay, what if I'm inside, can I get from the living room to the bedroom, or can I get from one office to another? It's not that, it's you're looking at every aspect of that building, and not just the interior, but the exterior as well. And so you mentioned you've got aging clients, so you're dealing with private individuals as well? 11:01 Yeah, yeah. I've just started basically that that's that's come about through the article that you saw that you contacted me through. So yes, I'm hoping that that's something that I can work more on that would allow people to stay in their homes and to maintain a level of independence that they want. Well, yeah, and like you mentioned, you know, Aging Society, I mea

Laen Herschler knows his live theatre. The UBC PhD student has taken the reins of Vancouver's inclusive Theatre Terrific and encourages anyone of any ability to get involved.   TRANSCRIPT Theatre Terrific – Expanding the Horizons for Anyone With the Acting Bug   00:09 Okay, we are back for another edition of DDA's encouraging abilities podcast. I am your host DDA communications manager, Evan Kelly. Today we are talking theatre. Joining me today is Lon Hershler, the brand new artistic director of Vancouver based Theatre Terrific. Theatre Terrific production and classes are for artists of all abilities to develop performance skills and collaborate in the production of theatrical works. All of Theatre Terrific's classes, workshops, community and professional productions are   00:39 are made up of people of all colours, abilities, genders, and backgrounds. It started in 1985. Theatre Terrific is now Western Canada's longest running inclusive theatre program. It has won numerous awards over the years. And now with Lon at the helm, the future is even brighter. So thanks for joining me today, Lon. It's great to be here. Thanks so much. Now that the gear is working, we can do this. So tell me, tell me a little bit about yourself.   01:07 So yeah, I'm really happy to be jumping in here with Theatre Terrific. I've been actually involved with Theatre Terrific as an artist for about six or seven years, working with Susanna, the previous director. I'm an artist, I'm a theatre artist of many different areas of theatre. I do direction, I suppose, artistic direction now.   01:35 But my background's really all over the board with theatre as an artist in many different directions and ways. And yeah, quite a while with... So you'd say that theatre acting, that's your lifeblood, that's who you are.   01:56 So I would say that I began as an actor and that's where I entered in. I entered in through the joy of acting in theatre and I continue to act, but I've been a teacher and a facilitator of theatre, I'd say predominantly for the last 10 years. And so really working with others to create theatre, devise theatre often, helping others to...   02:25 create works of theatre, also doing improv theatre. I do a lot of playback theatre, which is improvise, storytelling and community. So yeah, I have a love for the acting, but I would say I've been facilitating and supporting others in their acting for the last 10 years. Now, are you still an instructor at UBC?   02:51 Yeah, so I'm in the midst of doing a PhD. So I started off after my master's degree in South Africa. I did a master's degree in theatre making in South Africa and lived there for about four years and then returned and taught at UBC Okanagan in the theatre department, in the creative studies.   03:17 and it was a very alternative theatre department, really helping theatre artists create their own work. And I worked in that for on and off for about five or six years. And then I decided to go further in my studies, in my academic studies, when I moved to Vancouver and I'm doing a PhD and also teaching on the side at UBC as well.   03:44 Yeah. So what's your PhD gonna be in?   03:49 So interestingly, the work I do at UBC is in something called research-based theatre. And so what I've been doing is supporting academics of all disciplines who want to use theatre as a medium to reach perhaps community, to reach larger audiences, to make their work sometimes make the ivory tower, so to speak, more accessible to...   04:19 people that wouldn't necessarily open up an academic journal and read an article, but are definitely implicated and interested in the work that's being done, but would never necessarily have access to it for various reasons. And so theatre becomes this medium, this space for people to interact with new ideas, with research that has gone into community. And in fact, overlapping with a theatre terrific's work.   04:49 One of the major projects I've worked on for the last three years has been around a project with People in the healthcare professions across the board so social work medicine Really nursing anything that that intersects with healthcare and People who work in those professions, but also live with a disability and their experiences So there was a very large research project   05:18 into the experiences of individuals with hidden disabilities or disabilities that were not hidden and their experiences, the stigmas they might have faced in those jobs. And so then we created a piece of theatre that has been since touring online and in person for three years and it's been very, very successful. And that's not part of Theatre Terrific, that's something else? No, that was not part of Theatre Terrific.   05:47 Other than, I suppose, because of my involvement, I create a link between those two worlds, but it wasn't under the umbrella of Theatre Terrific, yeah. Now that, what's that piece called? That piece is called Alone in the Ring. Alone in the Ring. Yeah. And that's sort of touring now, can people go see that? No, I mean.   06:11 When I say touring, it wouldn't be, it's not touring in the sense of professional theatre touring to theatres. It would be that we would do a lot of conferences. We'll do medical conferences. We will do all sorts of different, we will do, in fact, like this summer, the incoming students for the physiotherapy and occupational therapy departments at UBC.   06:38 all of their incoming classes, first and I think second years, will do the performance for. And it'll become a performance that then becomes a talking point and a place of discussion and engagement with these issues with the students. So these will all be students that, you know, hopefully in a couple of years will be coming out and working in the workforce. And now they're going to have this higher degree of interest and familiarity and consciousness and awareness.   07:07 around these experiences of people with disability. And for themselves, if they are students, because there are quite a few who live with disability themselves, amongst the students, this becomes a space and hopefully a safe space for them to start talking with others about their own experiences and creating openness and awareness around that, yeah. Yeah, gotcha, gotcha. So it's really just more of a big education piece, educating people on sort of intersections of...   07:33 abilities basically and broadening their own horizons as students as they enter the workforce. That sounds like sort of a new way of teaching in a way. I could see that expanding into a whole bunch of other sectors maybe. Yeah, I mean it's definitely something that's growing. The idea of theatre, we're at UBC not maybe the first to do this. It's happening but   08:03 there's been a growth in this and people are starting to open to it and see. There was a lot of pushback at first, you know, in universities, they, they, they go, is that, you know, how can you bring the arts into, is that going to, you know, they, they are also ethical concerns. They think, Oh, is this, you know, are you, is it going to really represent the, the stories accurately of these, you know, research participants? Are their stories going to be really well represented?   08:31 And so we have to go through a lot of work of thinking through ethically, of discussion, of going back to the research participants and saying, does this represent you? Does this represent your story? And if there are participants who wanna perform or be a part of it, that's always the ideal in this particular show. None of the participants were performing, but they were involved often in giving feedback. And yeah, so it's something that's growing.   08:59 and hopefully there'll be more of this that's gonna happen in different sectors for sure. Yeah, that sounds really interesting and a good way to learn. Why did you get involved with Theatre Terrific?   09:15 Wow, because first of all, I met Susanna and Susanna who as maybe some of your listeners may know or those who don't know was the founding artistic director of Theatre Terrific for 20 years, more than 20 years. And she is a wonderful human being and brings so much joy and passion to the work she does. And when I first met her, her energy was so warm and inviting.   09:45 And when she told me about what she was doing, I said, you know, and I was already very involved in what you would call applied theatre, which is working a lot in community with theatre, seeing, like I said, that one example of the university, but I'd been working in lots of different ways where we see the power of theatre in so many that it doesn't just have to be on Broadway, that theatre, but theatre has this power to...   10:13 capture the minds and imaginations and spread joy and ideas in so many different directions and involve people in different things. And so when I met Susanna and I heard about the company, she was just, and I said, how can I be involved? And at first I just came in as an artist and I just volunteered my time and I just participated and I learned from Susanna how the company works. And I just.   10:40 became involved as an artist and I learned so much from everybody that was involved. Theatre Terrific is an incredible space. It's, you know, it's a really, as an artist I learned a lot and as a human being I learned a lot. And so I think there's not always, as an artist sometimes it feels like you're either sacrificing one or the other.   11:06 You either are going into the really mainstream theatre and sometimes you feel like you have to sacrifice a part of your humanness to try and make it and struggle in the industry. And on the other hand, sometimes you can feel like on the other hand, you have to sacrifice your art in order to be a part of community building. And then suddenly I found this wonderful nexus, this space that was for me nourishing both of those things.   11:36 And that's what drew me to Theatre Terrific and keeps me here. More

It's a long process, and it's not cheap. We chat with the founders of Leash of Hope Assistance Dogs who are doing everything possible to meet the demand for service dogs to help the world become more accessible for people with disabilities. TRANSCRIPT Filling the Gap - Leash of Hope Assistance Dogs   00:04 We are back with DDA's Encouraging Abilities podcast, where we talk about all things related to disabilities. I'm your host, DDA Communications Manager, Evan Kelly. Today we are joined by Danielle Main and Tessa Schmidt, who are founded Leash of Hope Assistance Dogs. I've wanted to talk to them for a little while now. That of course sums up what that is. We're talking about doggos. We're big fans of dogs here at DDA and anything that makes things more accessible for people with physical or developmental disabilities.   00:34 Thank you for joining me today. My pleasure. Thank you. All righty. So Danielle, tell me a little bit about yourself. So as mentioned, I'm one of the co-founders of Leash of Hope. One of the things that we're very proud about, and I'm very proud about is the fact that our organization is run by two women that both have disabilities. I am low vision blind with optic nerve dysplasia.   01:03 And amongst running Leash of Hope, I'm also a full-time registered massage therapist and train as a competitive rower. So, oh, wow. That's a that's a lot of physicality going on. Yeah. And Tessa, what about yourself? I. I have a special career, and my main role in Leash of Hope is to train the dogs and the clients.   01:33 And alongside of that, I work with children as a BI. Oh, okay. That's interesting. So did you both found Leash of Hope Assistance Dogs? Or is this mainly your thing, Danielle? We both found it together. So when Tess and I came together, we both had...   02:01 very complimentary skill sets. And we noticed that there was a need within the industry and the community of people with disabilities that we felt like with our unique skill sets that we could kind of bridge a gap and fill. So the two of us together, me having more business background and my background with dogs was, more dogs with like behavioral issues. And then Tessa having a more formal background education and...   02:30 service dogs and dog training. We felt like our skills were very complimentary to be able to start something from the ground up. So what is your background with dogs?   02:43 So my, oh sorry, go ahead. No, Danny, I think that was in the... Oh, I'm so sure. So my background with dogs, first and foremost my education was doing equine sports massage, which led into extracurricular education in canine massage, and from there I spent some time working in vet clinics and then as well as   03:12 working in a grooming salon as a grooming assistant, as well as being a professional border for dogs, especially dogs with behavioral or medical needs. So that was my background with dogs before starting Le Chappot. And what about you, Tessa? I apprenticed under several service dog trainers.   03:39 that works with multiple different organizations and have learned a lot through hands-on and working with the Balanceable Canine Program as well. Wow, that's interesting. Now, Danielle, equine massage, canine massage, is that... I mean, equine massage, I've got friends who get involved in horses, so I understand sort of the need for that, but I've never heard of canine massage before. Is that a thing that people... Like,   04:09 look for that kind of a service? The main reason why I would get requests for that type of service would be anything from like dogs that were in some kind of sport, same as kind of with people, same as with horses. And, you know, the dogs might have very physical sport needs of whether it's dogs that are doing like agility or barn hunt or any kind of like,   04:38 canny cross and so just like people end up developing aches and pains and imbalances and then I'd also work on a lot of like steamer dogs with aches and pains and imbalances so Interesting So you you started Leash of Hope because you saw a need tell me tell me about that in you know I'm not someone who identifies with a disability so I Wouldn't recognize the need for a service animal or a service dog what?   05:07 What are the barriers that people are facing in order to access this type of service?   05:16 Um, so I would say that the biggest barrier would be availability, especially for properly trained dogs and the most evident way that that can be seen is the amount of people that are trying to self evaluate the necessity for dog and then train on their own because they don't feel like the resources are available for them to get.   05:44 professionally trained service dog. And if you look at, especially when we founded the organization, what was available at that time, it was very minimal, especially within BC. And so because of that, Tessa and I, both being people that were very active, that had unique needs, recognized that there was kind of a lot of gaps within services that are being provided, mostly because   06:12 of how long wait lists are for some of the bigger programs or how much people were having to go out of province to acquire a properly trained dog. And then the alternative to being people trying to, like as a lay person, raise and train their own dog and self-evaluate if it's appropriate didn't seem like the best option either. So we decided to go into this venture trying to fill that gap.   06:41 For someone like me, I'm quite ignorant about this process. Now we're talking about service dogs. Is that the same thing as a seeing eye dog?   06:53 Um, it falls under the umbrella of an assistance dog. Service dogs are considered generally like different as a seeing eye dogs specifically, um, or, or guide dogs specifically see seeing eye dogs or there's actually a school. Uh, so a guide dog specifically is a dog that's meant to guide and navigate, uh, someone with sight loss through a rigid handle often, or some form of handle.   07:19 But they all kind of fall under the umbrella of an assistant or a working dog. So what about the animals that you two train? What are they designed to do essentially?   07:34 We have three categories of dogs. So we have three divisions within Leisure of Hope. One is the guide dog division for people like myself who are low vision or blind. We have mobility dogs under a mobility division. And those are dogs that are trained to provide assistance to someone who has mobility challenges. Maybe they're wheelchair users. Maybe they're able to walk.   08:04 with an aid or they need walking support, people to walk, to ambulate properly and comfortably. And those dogs are tasked trying to often to do things like press buttons and pick things up, take off coats and socks. Yeah. And then the last division is our medical alert division. And those are dogs that are trained for people who are deaf or hard of hearing, may have other forms of invisible disabilities like PTSD, autism.   08:33 And the dogs are trained to do things like alert to when it's time to take medication or turn lights on, you know, sometimes even pull blankets off of kids and going, come on, we've got to get you a bed or find an exit if someone's in a state of distress because of the environment they're in. So all three divisions have very different specific tasks that they do for their handlers. Now, now Tessa, I would imagine.   09:02 given that there are three categories of training, there's gotta be three different approaches to training. Now, would you, like, say you select a dog. I'm gonna get to that selection process in a minute or two, but if you select a dog, is it, it's then trained specifically for one category, or can you train a dog for all categories? We do, that is a specialty of our program. We do cross train our dogs.   09:31 but they're all trained to a baseline of tasks. And then once they are matched with the client, the individual, then we finalize the training and put in more specific training if required to the individual. Now, how do you go through the selection process for an animal or a dog rather? Like how do you decide, this one's gonna be really good, let's train him, this one not so good, we'll...   09:59 find them a family or something like that. Where's that selection process?   10:05 So we do a lot of testing throughout the dog's entire time in the program during their in training period. We have our assessment upon intake and then monthly assessments after that where we where we go a little bit they're inclined to work still that they are are wanting   10:34 can be in this field.   10:39 And do you get into the training process and then discover that maybe this, you know, one particular dog isn't a good fit and then you sort of got to start over again? Yes, sometimes that does happen. Okay, so that and where like, where do you where do you get the dogs? Are there specific breeders that that sort of target your industry?   11:06 We do work with a few selective leaders. The majority of our dogs are actually rescuer dogs. Oh really? Yes. So you're sort of solving a couple of problems, not just assistance dogs, you're giving these dogs purpose and a home essentially? Correct, correct, yes. And we rescue dogs from all over North America. Oh wow.   11:35 What about Mexico? There's lots of good dogs down there getting rescued.   11:42 Um, Danielle, I think we definitely do have dogs from, from, uh, Mexico test is prompting me because of the original leash of hope dog was my guide dog, Pedro, uh, who came to me with that name as a street stray puppy from Mexico. And, um, one of the things that's neat about that is, is, you know, our motto is we provide hope at both ends of the leash for that exact reason. Cause we, we, you know, fulfill that purpose, but that's part of why we do such extensive testing and we work with our network.   12:12 to pull dogs in. And if nothing else, if we pull it, we rescue a dog or young

The disability community must have self-advocates. Meet Elliot Hedley, budding songwriter, filmmaker, and screenwriter on why being a voice for his community is so important.   TRANSCRIPT   Elliot Hedley: Disability Advocate One Song and One Documentary at a Time   00:19 Welcome back to DDA's Encouraging Abilities podcast. I'm your host, DDA Communications Manager, Evan Kelly. Now with me today is a friend of the association, Mr. Elliot Headley. Elliot is an extremely creative self advocate who creates music and films, which we're gonna talk heavily about. Having studied film at Capilano University, he uses his craft and abilities as a tool for advocacy.   00:45 Navigating life with cerebral palsy, he dedicates himself to uplifting the voices of individuals with disabilities. His commitment extends beyond the screen. He actively participates as a peer mentor in the possibilities...   00:59 Social Media Fellowship. Now Possibilities is another organization here in the lower mainland that supports people with disabilities. He operates his YouTube channel Red Fighter Productions 96 where he showcases some of his advocacy work and music. So Elliot, happy to have you here today. Thank you very much. Okay so Elliot, tell me a little bit more about yourself in terms of the music and film and stuff. So film, like it's not a film. Film   01:30 I became like, well, as a kid because my parents both are in the film industry. So yeah, so it's a whole big family thing. Oh, wow. So what did your parents do in the film industry here? Was it here? Yeah, yeah, yeah. Well, originally my mom was from London, so they costumed theater, right, make costumes for theater, originally. And then she transitioned to like costumes for film.   02:01 And my dad does props, same as my brother. So they build me props, like guards knives, et cetera. So. That is, so your brother does props as well. Yeah. That's really, you're right. That really is a family affair. Is it just you and your brother? I have a few more brothers, but they don't do the same thing as me and my brother. So you have a few more brothers. How many kids are in your family?   02:30 Um, so there's me, Jack, Eden, and Lee Baxter, about four of us. Cool. So, yeah, to their families, but yeah. But that's interesting that you're all involved in that. That must make it fairly easy for your mom and dad. Did they work together? I don't know if they're retired now, but do they work together on films and stuff? They used to, together. Yeah.   02:57 uh... the laughing but that did was got to know and now my mom is a off-duty so she is trained to do fifty without all our while is in the end uh... is that for physical disabilities or any sort of range of disabilities well it's what you would just a few non-disabled   03:25 I presume. Oh in July, oh wow, still working on it, that's amazing. Yeah, yeah. So anyway, we got distracted talking about your parents there, let's talk about you again. So you've grown up with cerebral palsy your entire life, how was that for you? At first it was tricky because people didn't understand me and even though the cerebral palsy is fixed in speech and physical   03:55 this phase. So, yeah, I did go to speech therapy for that. And also, thanks to my mom again, she got me a game called Rock Band. I think you've heard about it before. Oh, of course. Yeah. Yeah. So, the doctor said, oh, you're not going to be able to play guitar or do anything with your back hands. So I started playing like...   04:23 locked down to my left hand, like, it's okay, not doing anything big, but then over time, it was from like stuck in this one position to I can actually play notes.   04:37 Mm-hmm. Well, of course you can play notes. I've got video of you playing in a bass guitar. We'll get more into that a little bit later. Yeah, and so your musical aspirations started on rock band. That's kind of cool. Yeah, I think people nowadays ask, what is rock band? It's a 2000's thing.   05:01 That was before, that was after my time I'm afraid. You see, one of the reasons I wanted to talk to you, because I myself, I'm a musician, I've been playing drums for 40 years, maybe even longer, I'm not even sure.   05:14 And so you and I definitely have that connection. And so, okay, so you fast forward from rock band, did you, before going to university or anything else, did you transition into an actual instrument? And I don't mean to offend people who use rock band, but it is not an instrument. So I first started on guitar. So I was guitared and halfway in my...   05:44 say halfway in high school I transitioned to bass because I went to Sarah McLachlan School of Music. Oh yeah wow. Yeah so that helped train like local Eastman artists like myself to get more trained in the arts. So what was it like going to the Sarah McLachlan School of Music?   06:14 amazing is a meeting connections and people know each other is you all from the east side and how big of a school is that i'm not even sure about that uh... they get the football field though it is a very every hopefully have to speak three hours a year   06:37 What is the thrust of that school? I mean you were taking guitars so do they just offer a whole bunch of different musicians? Do they offer composition? Like what's the kind of thing? They do like vocals, they do drums, there's drums out there. Singing, songwriting, bass, etc.   06:59 and DJing too if you want to be a DJ. DJ. That's for another conversation. And so from there you went to Capilano University? Yeah. I literally went there 2016, so that's three COVID years and   07:24 I was the only guy with cerebral palsy in the group, so it was like, it's kind of like awkward moments, so, so, what do you have, like, what's your story? I said, okay, here's my whole backstory to my classmates. They said, oh, you have some, excuse my language for you, you have some really dark shit.   07:48 So in terms of going to either Sarah McLachlan school or even Capilani University again, going to these schools as a person with a disability, how did you feel like inclusion was? How did you feel? Did you feel accepted? Yes, Sarah McLachlan is going to do that one first.   08:16 And for me, because usually with a guitar, you have to use all your fingers, like, oh yeah, left hand or your right hand. But for me, I only can use three fingers. Okay. So I'm like my own unique style of playing. And that shows some extreme adaptation. Like, that wouldn't be an easy thing to do for anybody. No. No. No. Even for you, who's a drummer. Oh, it's impossible for me as a drummer.   08:46 I have never picked up a guitar really in my life but And and so so you got through that that transition working with with three working fingers And how did that change your approach to the guitar and songwriting or just playing? For me so if you give me a music sheet I won't even cannot read music sheets. I just like make things   09:14 like as any artist, they make art from anywhere. So if you gave me MC Sheets, I would be like, I can't read this, but I make lyrics, that's what I do mostly. Yeah. Yeah, that is a good bunch of my years doing music.   09:42 then for Cap U, I want to like follow my footsteps in my family. But I know being kind of a disability is a tricky thing in the film industry. So. Now you, now you went to Capilano University for film, correct? Yeah, for film, then I transitioned to documentary after like halfway points because   10:13 I failed, not failed, I didn't graduate from motion picture. But they asked me if they wanted to do documentary. I said, yeah, so I went for it every year. So I graduated from that. And so you finished, you've got your degree and everything like that? I got a certificate. Oh, okay, okay. Saying I'm a documentary filmmaker.   10:41 Oh, I gotcha. Gotcha, okay. And I was gonna, you know, one of my questions is, you know, what got you into film? Well, your parents, probably. Yeah. So, that's... Yeah. And so, are you able to sort of, obviously you're passionate about music because we can even, we're gonna jump a little bit more into that. Yeah, of course. So how do you, these are two passions of yours, filmmaking and music writing. Do you bridge those two or do you keep them separate?   11:11 Like right now, I own a project. It's for people with disabilities. It's about artists who have disabilities and do art. And I asked some possibilities to do directing. And I said, do you want me to do some music? Just maybe in the background? And they said, yeah, yeah, that would be awesome. So...   11:38 I'm making some music for them and directing their project. Oh nice. Yeah. Still don't have a working title yet but... And that's for doing some background music on some... Was that a documentary or something? Yeah, documentary. Yeah. Okay. Yeah. And so, Till, like, the band Lakewood Grey, can you tell me a little bit about that? So...   12:06 During COVID, everyone was super isolated and they were bored out of their minds. Yup. I started playing music like, not every day, just like every few days. And then I called out some of my old high school mates from back in the day, and they were like, hey, do you want to make a band? So we made an online band for a few years.   12:36 I started writing this song and I like   12:41 So it's just me, Andy, and Madeline, and then doing COVID, this is so risky, but you make a music video during COVID, that was the weirdest time. It was outside, so I think it was a bit safer. Or most of it was, I think. Yeah, yeah.   12:59 Now just for those listening, you can see this video they made with the band Liquid Grants on his YouTube channel. Again, that's Red Fighter Productions 96. That would be the search term. And so you've created this band during COVID and you've got this one song. Is there more music we're waiting for?   13:29 her own soul, art, you know, so it's hard to keep track of those two. I want to do more, it's just so hard to get hold of those at times. Oh, I

It's one thing to have a disability and feel left out, it's another to be part of a marginalized group as well. We chat with Rabia Khedr, founder of Race and Disability Canada in this Encouraging Abilities podcast.   TRANSCRIPT   Standing at the Intersection of Race and Disability is Rabia Khedr   00:06 Welcome once again to DDA's Encouraging Abilities podcast. I'm your host, DDA Communications Manager, Evan Kelly. Now today we're talking about one thing that is actually two things.   00:16 In this world, unfortunately, we see a lot of discrimination. It can happen to any marginalized group, such as people DDA advocates for, and those are people with developmental disabilities. In our podcast, we also talk about accessibility and disability of all kinds. Now, people with developmental disabilities are more likely to be bullied, they're less likely to finish school, and less likely to hold down a job, even though many are perfectly capable of doing so. Now, another form of discrimination we see around the world is the one that's based on race.   00:46 Now, what if those two became entwined? Well then you have a potential for intersection of problems when it comes to acceptance and accessibility. Joining me today to discuss the intersection of race and disability is Rabia Kheder from newly formed organization Race and Disability Canada. Rabia is dedicated to equity and justice for persons with disabilities, women, and diverse communities.   01:11 They most recently served as board member of Accessibility Standards Canada and the Minister's Disability Advisory Group and previously served as a commissioner for the Ontario Human Rights Commission. She is the National Director of Disability Without Poverty and CEO of Dean Support Services. A founder   01:31 of Race and Disability Canada. She is also a board member of the Muslim Council of Peel, in Ontario of course, and a board member of the Federation of Muslim Women.   01:42 Rabia has received numerous awards for humanitarian services, including a Queen Elizabeth II Diamond Jubilee Medal. She holds a Bachelor's of Arts from the University of Toronto and a Master's of Arts, and she is also legally blind. So Rabia, thank you very much for joining me today. Thank you so much, Evan, for having me. And perfect pronunciation of my name. Thank you. Nailed it. That's good. Pardon me. Now.   02:08 Let's, right off the bat, you founded Race and Disability Canada. How did you get this off the ground? Well, I've been doing this work for years, almost 30 years. So my initial, you know, grassroots advocacy came out of an organization called Ethnoracial People with Disabilities Coalition of Ontario. And we were talking about the layers of barriers that people with disabilities face when it comes to race, faith, culture, gender.   02:38 age coupled with disability. And we didn't use the word intersectionality because we were really grassroots. We weren't running around in academia having these conversations. And fast forward, continuing that work, I discovered that there were huge gaps. And as somebody with lived experience, I'm blind. I grew up with siblings with intellectual or developmental disabilities for whom I was an advocate.   03:05 and or even substitute decision maker in different contexts. I recognized the exclusion. I lived the exclusion in many ways when accessing supports and services. And there were many other groups that popped up with similar needs through the Tamil community, South Asian community, at large, Asian communities, racialized peoples. And...   03:33 When I participated in federal space at the beginning of this century, you know, the 2000s, I discovered that our national conversation looked very white. There wasn't a lot of diversity from an intersectionality perspective, visibly present in the national disability landscape. And I stepped back and I focused local because I didn't belong there.   04:03 Fast forward a few years later, I went back, I did a master's degree, I founded Dean Support Services, and I went back to engage nationally. When I went back to engage nationally in 2017, I realized that again, nothing's changed. We still look the same.   04:33 culture still monopolizes the conversation on disability and disability policy in this country. So I came back and I said this isn't good enough. I reached out to my friends in other organizations and I said we need to form Race and Disability Canada to specifically talk about this intersection that makes us very visible.   05:01 coupled with our disability and poses all sorts of obstacles and barriers in our full participation in society. And that is equally true for folks with intellectual or developmental disabilities. Yes, absolutely true. So when you want to say how do you get it off the ground, how many people have been involved in this? And I know you're largely funded by the government of Canada, correct? Well, we did manage to secure a grant.   05:31 last year and yes, the work that we're doing right now is federally funded, which is really great. They have taken on some of the equity language and conversations that I've been having serving on the ministers advisory group and serving on accessibility standards Canada initially. It's really refreshing that they are looking at disability from an intersectional lens, particularly looking at that intersection of...   06:00 equity issues around race. And so we did some work initially at the grassroots level. We continued to talk about this issue wherever we could voluntarily or in other work. But really being able to mobilize resources and do real solid work hasn't happened until the federal government stepped in with its grant.   06:29 Right, I mean anything like this on a grassroots level is, it's got to be tough to do. It's got to be tough to find people to back it and it takes money to do something like this. It definitely takes money, especially when disabled people are leading the work themselves. We are the experts and it's important that we have the supports we need to leverage our expertise to bring the change that we need.   06:56 In terms of working with the government, have you been able to change some of the language within policy? What sort of effect have you been able to have so far? Well, like I said, they actually have put in their calls for proposals, applications for funding. They've recognized that there needs to be work done on equity and intersectionality. So, for example, at Dean Support Services,   07:24 just secured a grant specifically looking at equity and people with disabilities and knowledge mobilization. So this is another project that we will be getting off the ground, creating tools and resources and building capacity of the disability sector in Canada to appreciate, understand and respond more effectively.   07:53 to the lived realities of diverse communities of people with disabilities that have called Canada home. What is the IDEA project? And how does that relate to race and disability Canada? Well the IDEA project is essentially IDEA's the acronym, Inclusion, Diversity, Equity and Accessibility. So it's really to bring together research.   08:22 to better educate and inform disability organizations, employers, and society at large, how to better address the needs of people with disabilities who are racialized, who represent equity seeking groups.   08:52 needing accessibility, needing accommodation, but to look at the whole person who needs to belong, whether they are accessing employment opportunities or other opportunities within our society. And how are you reaching out to these groups and what sort of support and reaction have you been getting? So we are creating tools and resources, we are holding   09:21 focus groups, we are making presentations. So we're really bringing together the information and the needs out there to be able to appropriately respond. And you're doing podcasts. Yes we are. And what about Diversity Works? Is that separate from all of this?   09:47 That's totally separate. That's me, you know, in 2000, end of 2001 saying, I am quitting my full-time job because, you know, I worked for an employment service providing supports for people with disabilities and accommodation and access to employment. And I, you know, found myself in a situation where a colleague of mine was dismissed, who has passed since then, who had a disability.   10:14 And I was like, whoa, if we cannot retain a disabled person in an agency providing services to disabled people to find jobs, something's wrong here. I can't deal with this anymore. So I needed to, you know, balance my philosophy and my work with my family life. And I walked and decided to open my own consulting company so that I can do the work that has impact. And is that, I mean, outside of Race and Disability Canada   10:44 is the consulting company that's still your sort of bread and butter type thing? No, no, it's just a side hustle that sits on the back burner. And once in a while, somebody invites me to be a keynote speaker or something like that. I'm really not taking on large projects. It's more about speaking gigs. But my real work is disability without poverty right now. Right. That's right. You're quite, quite heavily involved with that.   11:12 And you talk about the employment and disability, it's, you know, that's a big thing for DDA as well. The thing I didn't mention is we operate another side of us, which is called Jobs West. And we work with clients and employers alike to get people working. And we employ about 100 people every year. So it's quite a successful thing. And it's something that we really got to focus on because, you know, I just pulled a few stats.   11:38 about the visible minority population with a disability in Canada. I'm sure you're probably quite aware of this. And it's visible minorities with a disability in Canada, both men and women, are around 14 to 15%. So that's a lot of people. That's a lot of people tha

Community inclusion for people with developmental disabilities is and always will be a driving force for DDA. However, here in 2024, some new players and organizations are emerging to fill the spaces in between to help broaden horizons and cultivate relationships for people of all abilities. Say hello to CURIKO.   TRANSCRIPT   CURIKO – Filling the Spaces in Between   00:07 Welcome back to another episode of DDA's Encouraging Abilities podcast. I'm your host, DDA Communications Manager, Evan Kelly. Doing things a little bit differently today. We normally have one person either in the studio or on the phone, but today we have three guests in the studio, four, including myself. We only have two mics, so we're going to have to be agreeable when it comes to sharing. No fighting. So joining me today are Sarah Knowles, John A and Rodrigo Galvan. They are part of a new digital platform called Curiko.   00:37 They're here to talk to us about what Curiko is and why it's here. So all of you, firstly, thanks for making the effort to come out and, you know, make the trip, as it were, it's a lot harder than getting on a phone. So thank you for being here today. Thank you. Thanks so much for inviting us and also for accommodating, you know, allowing it to be three of us. That's kind of how we run with Curiko. We like to.   01:04 switch things up and kind of push the bounds a little bit. Exactly. Well, you know, for those of us, for those just listening, that's awfully cozy in our little pod booth here. So it's going to start to get warm, I think. So perhaps maybe just start by telling me a little bit about yourselves. How about you first, Sarah? Yeah. So I'm Sarah, Sarah Kay. And I'm a Cureco team member. I'm what we call a curator.   01:33 And all that really means is that I work with all sorts of individuals, organizations, and businesses to share their passions with others. Um, outside of work, I'm just someone who absolutely loves people and really am always happiest when I'm on top of a mountain. On top of a mountain. So you're hiking or like actual climbing? Hiking.   01:59 I do indoor bouldering, but haven't actually gone into the outdoor climbing scene yet. And John, how about yourself? Well, I'm not sure. I'm just, I'll just say that I'm getting three words. I'm a Catholic autistic gamer.   02:23 Catholic Autistic Gamer. That looks good. And what's your role with Kiriko, John? Just a member. And I guess I'm starting hosting. Oh, that sounds good. We'll get into that in a little bit. And how about yourself, Rodrigo? Hi. Well, yeah. My name is Rodrigo. I'm a Catholic.   02:42 What can I say about me? I love exploring. I'm a nomad at heart. I like food. I like cooking. I like trying new things. And I'm, I started as a member and I'm a host. It has been almost a year as a host in Curico.   02:59 And we were talking just earlier, you're from Mexico. Yes, I'm from Mexico. See, I said that properly. Yes, in Spanish, Mexico, right. And how long have you been in Canada? Five years, a little bit more than five years. So what brought you here?   03:16 I used to be a digital nomad. I travel around the world. I arrived here in Canada at the end of 2017 and I fall in love of the trees the trees that were near the the SkyTrain I was like this amazing. I want to stay here. So you you've given up Sun for rain is what you're saying Yes, but let's put it like this. I prefer cold. I don't like   03:42 warm weather, so I'm in the right place. You're an anomaly. You're an anomaly, I'll give you that. Okay, so Sarah, let's just talk about Curiko. What is it, what is it for, how does it work? Yeah, so...   03:57 We like to describe Curiko as a community building platform. So we have a website, Curiko.ca, and on this website, you can find tons and tons of different experiences. And these are all sorts of opportunities for anyone. Anyone can go on these, and these are kind of activities or events that can be one-on-one or group, in person or online. And they're just opportunities   04:27 to have different types of connection. More moments of connection to themselves, connections to other people, connection to spaces, to ideas, to a sense of, you know, culture. And so really that's what Curiko is, is we're a community building platform. We offer up opportunities for people with and without disabilities to come together and have experiences. So when was this started?   04:55 Yeah, so Curiko as Curiko kind of got started at the very end of 2020, very beginning of 2021 was kind of the time. However...   05:07 Um, Curiko kind of actually is just the most recent iteration of kind of a 10-year process. A 10-year process of research and development that actually came out of, um, a big kind of partnership between three really big disability-facing organizations, uh, Possibilities, Kinsite, and the Burnaby Association of Community Inclusion. We know them well. Yeah.   05:37 maybe something you know a little less well, which is a social design organization called InWiF Forward. So they came together with this social design group and started what is now a 10 plus year process of research and development. You call that InWiF Forward? InWiF Forward. In with? Yeah, InWiF Forward. InWiF Forward, okay. It's a social design organization. And Curacle is kind of one of the now most kind of   06:06 developed prototypes that came out of that organization. And so, your website mentioned some research that's been done before this. I'm trying to get a sense of the mission or the goals behind this that means you gotta do all this research. Can you talk to a little bit about that? Yeah, so what happened was these kind of three disability-serving organizations kind of came together.   06:36 And they really had this really, really brave kind of question they asked themselves. And that was, in the work that we are doing, are the people we supporting with intellectual disabilities actually living flourishing lives in community? And they answered, maybe no.   06:57 And based on that, they kind of reached out and partnered with this, at the time, very small but very exciting social innovation firm. And what they did together is they sought out to kind of therefore investigate.   07:16 What is it, how does social isolation for people with adults with intellectual disabilities look like? So based on that overreaching question, a group of people from all four organizations actually went and lived for several months back in 2014 in a social development complex in Burnaby. They lived there and they talked to people. They talked to them.   07:46 And not only did they get a sense of how their lives currently were, but they also asked what could they be. And some big things came out of that. Some big things was that social isolation wasn't just a matter of not having people, it was a matter of actually feeling connected to those people and also having a sense of a couple of things. So having a sense of purpose in their lives and also a sense of kind of novelty.   08:15 this kind of idea that maybe there wasn't really kind of flourishing lives. So lives that were connected to lots of moments, big and small, of different types of connection. You know, moments of awe and beauty and also purpose. Mm-hm.   08:34 And so that that was kind of missing. And so what started was initially something called Kudos. And that was creating opportunities for people with intellectual disabilities to go on experiences hosted by all sorts of individuals and businesses and organizations to just kind of share their passions with people. So these were one-on-one in-person experiences. And that happened for a really long time starting in 2015.   09:04 took on a life of its own, got funding. But eventually, with continued ongoing kind of research and listening and evaluation, it reached a point, kind of came to a head right before the pandemic, that, oh, maybe actually some of the existing power structures that led to maybe a sense of not flourishing lives are being replicated now. And so it led to changing again. And that's where kind of Kyrraco came in.   09:34 came out, whereas Kiriko now has kind of taken this idea of experiences and opened it up.   09:41 So now absolutely anyone can go on a Curiko experience. There is no eligibility requirements. And also anyone can host experiences. So people with and without disabilities both go on experiences and host experiences. And these can be group and one-on-one, in-person and virtual. So it's really open to that. So Rodrigo for instance, not only hosts experiences,   10:11 experiences and so does John. Yeah, I want to talk about that shortly as well because it's now did this is obviously an online platform which helps. I mean, let's let's be honest being on the digital world helps people get connected than then just, you know, prior to the year 2000. But did did COVID   10:34 sort of make you move faster in this direction. Because that got me that shut everything down shut up. I mean it made people who were lonely even lonelier presumably. But it also kind of required to shut down like kudos was functioning as an in person one on one and it had to stop.   10:50 couldn't do that anymore. So in the space of that couldn't happen, it allowed for the ability to try new things. And so in the immediate aftermath, kind of what happened very quickly was something called ComakeDo. Now ComakeDo was a virtual platform which was virtual group experiences. So it was the immediate stop gap. We can no longer do one-on-one experiences in person. How do we still create moments of connection?   11:20 And so, Ko-Me-Do happened and that kind of was a stepping stone and it also gave time so that, you know, new things can be tried and Kiriko could be created. But out of that also came an understanding that for some folks, virtual is actually always going to be better and for others it's not. And so, even though we're back to doing lots of in-person stuff, we're never going to aban

Making personal sacrifices for your partner's career is one thing, creating a home in several countries while at the same time caring for a severely disabled child is another. We caught up with Rachelle Rosolofo-Czerwinski to talk about her new memoir, The Life That's Chosen Me - From Russia With Love.   TRANSCRIPT   The Life That’s Chosen Me – From Russia With Love   00:07 It's time again for DDA's Encouraging Abilities podcast. I am your host, DDA Communications Manager, Evan Kelly. Joining me today is Rochelle Rosa I'm hoping I'm saying that correctly. You do. That's a difficult one. Now Rochelle has an amazing story to tell, which she has brought to life in a new memoir called The Life That's Chosen Me From Russia With Love. It is available on Amazon and it's a very well written and fairly quick read if you're interested in picking it up.   00:37 travel writing, part diving into the culture and language of other countries, part learning to do that with a family of four where one child has a severe developmental disabilities. Rochelle was born in Madagascar, raised in France, and then married a German Canadian who worked high up with the United Nations, and it's a job that took her husband, Chris, to East and West Africa, Italy, China, Egypt, and then over to Russia.   01:02 To me it sounds like an amazing life, but of course there are hardships and difficulties along the way because it's not just about traveling freely, it's uprooting, it's making big changes, it's moving for a partner's profession, it's creating homes, even learning new languages, all with a child who needs extra care. Rochelle and her family, which includes her two sons Mike and Nicholas, now reside in Vancouver and we're of course happy to have them back here. So thank you for joining me today, Rochelle. Thank you, Ivan, for having me.   01:31 Now, it's clear you've led a very interesting life. Before we talk about disabilities, not everyone can do what you did. That's getting up and moving for a spouse whose job has changed, especially with an entire family. How difficult was that for you? To tell the truth, at the beginning, it was not. I just took it in stride, you know, and here I am, a new bride, and my job was to follow my husband.   01:58 I just thought when I came from Madagascar that we would settle in Canada. So little did I know that six months after settling down in Vancouver, my husband announced that we go into Africa. And from there, you know, after Africa it was Italy, and as you mentioned, then after Italy it was China, and then Egypt, and finally Russia. And I think in Russia I started feeling a little tired.   02:26 Globetrotting, I guess, as it were. Yeah. That must have been, like I said, it's not just traveling freely without kids when you're young or something like that. It's literally recreating home wherever you are. I mean, is that a difficult thing for you to do, or do you just take that on as a challenge?   02:47 I took that on as a challenge, but as time went by, it became more and more difficult. Like you're losing your friends and you have to look for new schools and create new homes. And of course, you know, with a child with special needs, and our son Nicholas had severe, significant special needs, it became harder to find therapies for him.   03:11 physiotherapies and speech therapies and this and that. So it's difficult enough if you stay in the same city like Vancouver, but imagine if you have to move country and not just country, but continent because actually change continent each time. Yeah. Well, exactly. And obviously there's some cultural things we can dive into as well, but you also mentioned that you've learned multiple languages. How many languages can you speak now? More or less fluently, five I think. French is really my first language.   03:40 I came to Vancouver, but because we did everything in English, I kind of picked English. I did learn English in school. And you may still hear a little French accent here and there. Oh, of course. No, more than a little. More than a little? Okay. And that's been like 20 years in Vancouver now. But you also, can you speak Chinese?   04:09 I did study Chinese for a semester in post-secondary and that was one of the most impossible things I've ever taken on. So I doff my hat to you to be able to do that. And did you learn a bunch of Russian then as well? I learned Russian during our two years in Russia. Russia was not as easy for me. I think if you read the book, I mentioned that.   04:37 I have more difficulty when it is a different alphabet as well. When it is a Roman alphabet, French and English share the same alphabet. Most European languages like German, like Italian, which I speak too. French. We share the same ABC. Yes, the romantic languages, right? Right. But when it came to Russian, they used the Cyrillic alphabet.   05:01 When it comes to Chinese, they use those hieroglyphs, those pictograms, and so then it becomes more difficult. So in those countries, I learned more to talk and to understand. I didn't put too much energy in learning to read and write because I knew it would take me years, and yeah, so yeah. So was it a bit of a relief to get back to Canada? Absolutely. And when did you come back to Canada? What year was that?   05:29 So I arrived in Canada from Madagascar in 1984 to get married and we started our Nomadic life soon after that and we came then back for good to Canada in 2005 now is your husband still working in Russia or is he for here for good now to be in Canada He's back in Canada for good. Yeah. Oh, that's good. And is he still working with the United Nations here? Or is it something different he's doing? Well, he does some consultation work. So   05:58 at least we'll be based in Canada, which is providing more stability for the family. But then he did some consultation work in Africa, in Asia, and yeah. Now, tell me about your sons. Michael, he's your typically developed son. He must be, I'm guessing, pushing 30 now? You're guessing right, he's 36. And Nicolas.   06:23 our young adult, but still a big baby in many ways. And Nicolas is now 35. Oh, so they're, yeah. So what is, you talk about in your book about Mike, trying to adapt in a variety of different schools in different countries, which must have been a challenge for him at the same time. I was thinking, when I was reading this book, how he probably looks back on that with a certain fondness and he's got this incredible life story behind him now. So what is he doing with himself now?   06:50 So now he works in, he used to run his own company. And then when COVID hit, you know, that kind of took a dive like many small companies. And now he's working with a concrete making company in Coquitlam. Nice. Yeah. Nice. And so how's Nicolas doing? And Nicolas is well settled in his own life. He doesn't live with us anymore. It does, it cannot live alone.   07:18 because of his special needs, but he shares a house with another person with disabilities and with a team of support workers. So very, very much like what DDA does for our clients, but like you mentioned, you're working with Spectrum organization. And how is, does he like living on, I guess I should say, how long has he been living on his own? And so I think he started living on his own in 2009.   07:46 That was a big transition for me because as I said he's still like a big baby and of course for a mother to let go of a baby no matter his size or his weight or whatever, he's still a baby. And so that was that big transition for me to let him go, yeah. And does he enjoy being apart from you? Is he enjoying his independence? Yeah, he has a fairly structured life. He goes swimming on Wednesday, Science World on Thursday, music on Tuesday.   08:16 a library on other days. I think he's going to outlive all of us. Well, that's good. I mean, it sounds like he's really enjoying his life. Let's go way back though. Like when you first knew that Nicholas was gonna have problems, how did you feel about that? And how did you deal with that? So I remember that clearly, that was in Africa. We were in this small African country that's called Djibouti. And...   08:44 And Djibouti is one of the hottest countries in the world. It's like 45 degrees Celsius at night. So during the day it's even more. And so the habit of people there is to have a nap. Otherwise you cannot survive. Nobody works between 12. It's the siesta, I guess. La siesta, exactly. Everybody's away and have a nap.   09:09 between 12 and three, and most organizations would only open until one, and then everybody's off until the evening. And I remember clearly one time we were having a nap, and my husband got up and he told me Nicolas is doing some funny things. And, you know, I was a new mom, Nicolas was two months old, maybe three, I said, oh, you know, he's just a baby. And my husband said, I think he's doing really some strange things. And so finally I got up.   09:38 And yeah, and they had no experience at all about seizures, but he was having seizures, yeah. So that was quite a shock, yeah. And that sort of, and then at that point you knew like, okay, there's some developmental things going on here. Exactly, so luckily, my husband had more experience in seizures than me because he had volunteered with L'Arche, which is a big organization, and they are everywhere in the world.   10:06 and he had done a gap year after UBC in France. And so he had been exposed to people with disabilities and he told me we need to take him right away to the doctor and I'm like, oh my God, are you sure? And so yeah, wait. And then after that, it went really fast. Three days later, we were on the plane to Paris to a pediatric hospital.   10:33 stayed there for three weeks and for me it was the worst time of my life having to come to terms with the diagnostic that you will be very impacted and the doctors in France said you know we don't know how it will develop but we just know it's go

Ratnam Mathur is one of our valued group home managers who, like many staff at DDA, found a calling that pulled them off a defined path and into a career that meant so much more than money and fancy titles.     TRANSCRIPT Vital People – A Career in Caregiving at DDA   00:10 Welcome back to DDA's Encouraging Abilities podcast. I am your host, DDA Communications Manager, Evan Kelly. Today we're talking about caregiving as a profession. To me, it's a profession that we as a society often take advantage of. We don't look at it as one of those jobs that you shoot for necessarily. It doesn't have the cache of doctor, lawyer, CEO, or what have you. But these jobs are vital, not just to the people DDA supports. They don't always come with the highest wage or even respect, which is wrong in my mind.   00:39 caregivers are vital to everyone in the literal world. At some point in our lives, if not now, at some point we will all need care, whether it's at a home because of illness or injury or a seniors home or a group home like the ones DDA operates, we are all going to be touched by this need and this profession. So I wanted to shine a light on one of the dedicated employees here at DDA and talk about who they are and what they do and why.   01:04 Joining me today is Ratnam Madhur. She is a long time employee of DDA and manages our Curzon Group Home that five people with developmental disabilities call home. Many of the clients we support in our 19 homes in Vancouver and Richmond have been with us for decades. I mean, they literally become family. So Ratnam, thank you for joining me today. Thank you, Evan. Thank you for inviting me. So just right off the top here, what got you started in this line of work?   01:32 Prior to coming to Vancouver, I taught in a school in Germany that had many kids from refugee families. They were from Albania, Romania, Turkey, and other European countries. Some kids were separated from their parents and were waiting for their arrival. A social worker was assisting the kids in their different needs. These kids were going...   01:59 through struggles to adjust a new culture in their relationship to other students. In their learning and doing homework, it was obvious to me that their families too were going through difficulties at home. Trying to cope with their status as a refugee, I spent time with kids and listened to their stories. I did not speak German, nor they spoke English, but working with some very simple words.   02:27 in English and German, and with the help of a social worker, we made enough connection to understand what was going on in their lives. These kids needed a lot of help to cope with pressures of studies and at school, as well as in dealing with their trauma and mental health challenges. It was challenging for me to win their trust and to create a helpful environment.   02:55 so that I could help them in their studies and sometimes their families at home as well. This first-hand experience for about three years gave me a unique perspective on empathy and value of community service. So when we moved to Vancouver in 2003,   03:18 I wanted to continue in this field at schools as special needs teacher, but my work permit did not allow me. So how come the work permit wouldn't allow you to be a special needs teacher? Because I was on NAFTA, I have a US passport, and they don't allow to work, the spouse was not allowed to work with kids and schools. So much so that I could not even take the courses. Really? Yeah. So take me, so you're in Germany at this point.   03:47 And you're helping kids with, no they were developmentally disabled? No, no, actually they called those schools as international schools and mostly that international is refugee kids from all.   04:04 over neighborhood countries. What sort of challenges did you face there with, like, I mean, obviously there was some language difficulty. Absolutely. They are also learning German, and you cannot survive there without learning Deutsch. So that was it. And you know, kids are really good at picking up the language. That was not an issue. The issue was the all struggle, they have come through that. Because from family, when people are arriving,   04:34 It's not the whole family coming together. It's one at a time. So that is a challenge. Sometimes kids come and the parents come later. So the social worker plays a really very very important role. So that must be some emotional challenges to deal with as well. Absolutely. Emotional, mental, like you know, to adjust with the culture and with the kids and you know, to be just normal.   05:00 And did you find that it was a very successful system over there in Germany? How was it similar to here? I think I don't know the system here for the refugees so much, but I was surprised. They have a very good system there.   05:14 a lot of resources in the school, especially for the kids. I don't know all over how they'd go, but working with this social worker, I came to know that they have a lot of resources. They help with kids like, you know, throughout their journey till high school, till they...   05:35 complete that. Where did these kids mostly come from? Romania, Kosovo, Albania, all neighborhood countries. Must be sort of interesting seeing the political upheaval in all these countries. Absolutely, absolutely. I feel sometimes in Canada we're quite isolated and protected. Yes, we are protected, that's true.   05:59 I feel safe to be here. Absolutely it is. Sometimes we take that for granted. You came from Germany to...   06:08 the United States and then to Canada? No, actually I got, I'm from India. I got married there. My husband was in Yale at, in US, Connecticut. Oh, he went to Yale? Yeah. Oh, wow. So my, so I stayed over there. And then I'd say about five years we moved to Boston and there I started working in multicultural school, in the bank.   06:38 moved to Germany. It's all because of my husband's job.   06:42 Okay, and how long did you live in Boston? That's interesting. Oh almost nine years really cuz I my my family spent a year in Boston This is an aside on this podcast now He's any of my dad today a second master's degree at Harvard when he was with the government Saskatchewan other so yeah, my husband was working for Harvard too. What does he do? Oh, he does research Okay, he was doing research that time nine years in Boston. What do what part of Boston did you live in? Oh, we were suburb Norwood   07:12 Almost 45 minutes from the main town. We were in Belmont, Massachusetts, near Cambridge. Those are very expensive, couldn't afford that. It was good. My memory was quite young, grade 4, grade 5, so my memory of Boston is quite good. Anyway, back on point. So you got to Canada and you wanted to keep working in this field.   07:42 What is your education and what is your actual expertise? I have done my masters in commerce and I have done my double graduate in English literature and B.Com English literature. Yeah Right that right then all my education is done in India   08:03 And yes, when I, you know, that is what I tell my kids too, that you never know what you want to be. Like, you know, after graduation, after this, there was some hollow in it. Like, you know, I worked in Boston, I worked in the bank. And, but still I need to know what.   08:24 So when I got this opportunity in Germany, working with a social worker, that time I felt that, yes, this was it. More of a synergy. Yeah. And so, I mean, you did your commerce degree and English literature, I mean, wow, you've got some education behind you there. And you worked in the bank in Germany, that was the only time you sort of used that particular degree? I...   08:52 I used that in Boston too, my degree, because over there I was actually looking forward to complete my CA. My credentials were all approved, so I was about to go into that direction. Oh, I see. But I think you raised such a good point, because about, you know...   09:15 what it is we educate ourselves with, what we think we should be chasing versus what we end up wanting to do. And so what...   09:25 I mean, you helped the refugees in Germany. And so what made you keep wanting to do this here in Canada? Yeah, when I moved in Vancouver, I was looking into the same field. But because of some restriction on my work permit, I could not. Then I started exploring the nonprofit organization. Like, you know, and, but with that, I want, because my kids were in school,   09:55 to get a full-time job. So during that time, I got employed by Indian Consulate. I was working there. That's here in Vancouver? That's here in Vancouver in downtown. And then I saw this posting, DDA posting. And I applied for it and that's what I got. What was that posting? Oh, it was Grandview CSW.   10:21 in a Granview Day program. That time it used to be called. So CSW was a community support worker, and that's where it started. Was that a full-time job when you started? It was, yes, it was a full-time. And was it what you were expecting? I mean, had you worked with people with developmental disabilities before? Not directly, but during this I had learned a lot about it. And when I started...   10:48 working. I even picked a few courses online and, you know, update, upgrade myself. Did DDA support you through that? Absolutely, it did. I think that very year I was very lucky to get involved with direct support worker course. That was our pilot project at DDA and that helped me a lot too. Oh, that's good. And so, I mean, when you applied for that, did you know much about DDA at the time?   11:18 But as on work, I started. But you knew, you knew this is the direction you wanted to go. Absolutely. That time I was really clear. Yes. I mean, yeah, that's it. I mean, you're the kind of people we want. People who make that decision in life, it's like, I'm here to help and give back. And so how? Sometimes I think that it's too late, but never late. Too late for what? What do you mean? I me

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