Encouraging Abilities Podcast

Sirota’s Alchymy: A Doorway to inclusion

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

Connecting on the ice and pitch with Sportability BC

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

Changing Attitudes One Street at a Time

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

DDA Chats with Disability Advocate Spencer van Vloten

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

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

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

Kello Inclusive: Edmonton-based Modeling Agency is Starting to Get Noticed

Not even two years old, Kello Inclusive Modeling Agency, based in Edmonton already has some massive brands seeking them out. But what's more important is the clients they represent.  We chat with founder Katie MacMillan.
 
TRANSCRIPT
 
Kello Inclusive: Edmonton-based Modeling Agency is Starting to Get Noticed
 
00:06
It's time again for Developmental Disabilities Association's Encouraging Abilities podcast. I am your host, DDA Communications Manager, Evan Kelly. Today we're talking about inclusion. We've been talking a lot about accessibility. Of course, that's important too. But inclusion is one of the driving forces of DDA and its community. Joining us from Edmonton is the founder of Kelo Inclusive. It's a modeling agency based in Edmonton.
 
00:29
You know what makes this agency different is that they're fundamentally about inclusion and striving for representation in the modeling world The clients they represent have a disability of one form or another they might be missing a limb or they may have a cognitive Disability it sort of runs the gamut so right from their website. I'll take this little quote Representation matters because when a person sees themselves represented fully and fairly in the world they live in they know they matter being inclusive means
 
00:57
taking the time to listen, learn, and adapt. Kelo exists to make that change and to be that link in the industry that is looking for to make the leap toward true authentic inclusion. So Katie McMillan is the founder of this great business. She brings her experience and drive to include through her three children, one of whom has cerebral palsy. Katie, it's great to have you on the show today. Oh, thank you so much for having me. This is awesome.
 
01:26
Now, firstly, thank you for obviously creating such a unique business in a professional, in a profession, I should say, that is normally dominated by what might call the industry standard of beauty. It's just really nice to have that.
 
01:42
Yeah, and if we, I mean, we could probably make a whole other episode on talking about beauty standards and all the ways they need to maybe expand. But we will definitely focus on disability today. Yeah, I mean, it's an industry that seems, at least in Canada, to be starting to have the conversation of inclusion and how important representing
 
02:05
body diversity, size diversity, neuro diversity, sexual diversity is, but when it comes to disability I think the conversation sometimes stops prematurely because I think it's so new in
 
02:20
It's not mainstream yet. And so I think the conversation stops sometimes because if I'm being blunt, I mean, it's scary for people. If you haven't had the lived experience, if you haven't had a close connection with someone who lives with a disability, it can be a bit scary and challenging and worrisome for people to just jump right into it. And honestly, that's what our agency is here to help with, is to make working with disabled talent less.
 
02:48
less scary, less of a question when you have the support in place to do that, then it's something that people are going to consider. Yeah, and I find, you know, after working with DDAs, that people, they don't know how to approach or they don't know how to necessarily deal with people, so they end up infant, people with disabilities, I mean, so they end up infantilizing them. So I look at a business that you're putting together here and it's just like, wow, these
 
03:16
these people belong on the front cover of a magazine. Right, and I know, and it's so funny, like, so I say this all the time, and again, okay, just to put a little context, as you mentioned, I have three children. My middle daughter is 12 years old. She has cerebral palsy. My oldest is 14, my youngest is four, so wide range. But I've been the parent of a child with a disability for 12 years. And I would say, if I'm being really honest about it, my...
 
03:42
For the first 10 years of Kelty's life, I would say that I didn't, I did a lot of things for her, but one thing I did not do intentionally was to have conversations with people who live with disabilities, people who are disabled. And about two, two and a half years ago, it was a giant shift for me where I started to listen to disabled voices. And I learned so much.
 
04:08
so much from the disabled community and it seems like you know something that would be so straightforward like if you want to learn about disability like go to the source like duh but I learned but you learn about disability through the context of ot's and pts and doctors and you know specialists and all of these people who are so knowledgeable but they are also not disabled um and one of the things I learned really I mean I could probably fill again a lot of time talking about all the things that I learned but one thing just circling back to what you said is the
 
04:36
One of the things, one message I heard repeatedly is disability gets associated with a very small number of things. It gets associated with tragedy, it gets associated with inspiration, and it gets associated with, as you mentioned, being infantilized or people are condescending or they're patronizing. And it really doesn't go beyond that very often. And I'm trying to reconcile this with my 12-year-old who's...
 
05:03
sassy and spunky and trendy and cool and kind and all of these things. And I'm like, this doesn't jive, right? And so that, I mean, that was my discussions with the disabled community were really the buddings of this agency and how much it was needed. Yeah. And I think, you know, when you when you present the disability community like you are, it's what I find even not necessarily with cognitive people who have got cognitive disabilities.
 
05:33
I talked to one woman recently who had vision problems or mobility problems, she was in a wheelchair, and it's this notion that people with disabilities can't accomplish things.
 
05:48
you know, someone would say to her like, oh wow, I'm so happy you got outside. It's like, yeah, of course I got outside. Did you want to talk about my law degree as well? Like, it's this notion that they can't accomplish these things. And when I see your website, I think that just flips that on the head for me. Well, I mean, media shapes perceptions, right? And when we tell a single sided story in media, then we get a single sided public perception. And when disability is always associated with, you know,
 
06:17
as being an absolutely tragic fate, then that's when we have this one-sided perception that, oh my, you have a mobility aid, you need support, you have access needs, like this is so sad.
 
06:30
and how could this possibly, you know, how could you exist in a world? And I mean, it's just not the case. I mean, I can't say that as a person or a parent in my case, but when you are a person that lives with mobility issues or have a good reason to consider access needs, I mean, life is frustrating. But a good big part of that reason is because you never have to consider your access needs until...
 
06:49
you have a person with a disability in your life, or you are become a disabled or are a disabled person, then you start to have to consider these access needs. And I think the more people that are exposed to disability in media, now we all have a lens of, we're gonna look at our world through a slightly different lens of saying, wait a second, I see wheelchair users in magazines all the time, and maybe I can consider access needs from a whole different perspective, but if they're not even part of the picture, literally, then...
 
07:18
people don't even think about it. And that's the problem and leads to so much complication and frustration for folks with disabilities. Yeah, absolutely. And that goes into whole other topics of like universal design and looking at, just looking at things through a different lens. I mean, designs, I've talked to a gentleman at the Rick Hansen Foundation a little while ago for another podcast and his perspective was that, things are designed for males between the age of 15 and 50.
 
07:48
But that's it. So we've got to really shift that lens. You know, there's a disabled content creator that put it so clearly to me. He said, you know, non-disabled people have never considered their access needs because they're always met. Like, no non-disabled person is calling ahead to check if there's a staircase available for them when they arrive because there's always a staircase, right? Like, whereas, you know, so when your access needs are met by default, you don't even have to consider them.
 
08:13
And you're right, that is a bigger conversation. But I mean, that's why representation matters. And I know with Kelsey, like, you know, when she's a 12 year old girl, that is the age that you become aware of the world's opinion. And she's had moments of like, you know, why am I in a wheelchair? Why do I have hearing aids? Why do I have to wear AFOs? Like, you know, why me? I'm so different. And in a moment of real emotion for her, you know, it doesn't matter how eloquent I am as a mom, it's the only thing that pulls her out of that moment is showing her pictures
 
08:43
women who have cerebral palsy, who are successful and happy and have children and have full and rich lives and the internet is a beautiful tool for being able to do that. But I have to go searching for that, you know, I'm looking those up and I'm pinging those in my phone so that I can show them to her what I'm looking for and what we're looking for with KEL Inclusive is to just, you know, make it be part of TV shows and magazines and dialogue and all of it.
 
09:07
and it might take some time to get there to represent the full numbers. You know, if they say, you know, a quarter of Canadians, you know, live with a disability. And then if you extend friends and family that are connected to those people, I mean, a good half of the country is either associated with someone who is closely associated with someone who has a disability or has a disability themselves. It's not like we're talking about a niche market here. It's like it impacts a lot of people. But the media just seems to treat it like...
 
09:36
Like it is a niche space and it's just not. And so let's jump right into this, this whole modeling thing. Do you come from a modeling background or is this just something brand new that you started? Great question. So I'll give you the origin story. So when Kelty was about five, I saw somebody posted on Facebook a Target magazine from Australia and in the girls clothing section.
 
10:01
was just one of the models had was using a crocodile walker, that little orange if you have CP in your world, you know what a crocodile walker is. And she was just posing. They weren't calling out the fact that she was disabled, nothing. She was just with the other in the clothing section. And I remember being like, oh, that is just awesome. You never see mobility aids in fashion. And to answer your question, no, zero in modeling experience from my background. But anyway, I saw that and I sort of thought, that's so cool. And I filed it away in the back of my mind for a while. And then COVID happened.
 
10:31
And everybody, like everybody on the planet, had a little more time on my hands. And I sort of recalled that, that Target magazine. And I thought, you know what, I'm just going to, I'm just going to send Kelty's pictures to a modeling agency in Calgary, see what happens. So I did. And they got back to me and we had a intake call and they signed Kelty. And, and I remember thinking I was so, we were so excited. We were like, this is so awesome. Like.
 
10:55
I would not have gotten my other children involved in modeling, not because I don't think it's an important career or could be an important career, but it just wouldn't have been something on my radar. But I was truly doing it to see if we could get more better representation. And so Kelsey was signed with this modeling agency for about two years. And we had a handful of experience with them, most of which was new to me. You know, but we were left just with such a bad taste in our mouth. Really to summarize, it's just
 
11:23
that industry did not know what the heck to do with disability. It was just so very clear to me that that was the case. I mean, we would show up to fashion shows and despite knowing they had a wheelchair user in their runway show, there was no ramp to get up on the runway. Or the clothing choices that would be chosen by the designer just would never fly with a wheelchair, a giant poofy dress that would get caught in her wheels. Or nobody knew the right questions to ask. Or one really upsetting moment for me, especially in hindsight was...
 
11:51
Kelty being paraded down the runway at the very end of the show to different music that was like, you know, the inspirational like look at the kid in the wheelchair and the the people the organizers of the show were sort of parade there were people crying in the audience and I'm not even sure why Kelty looking over at me like what the heck mom like why are people like I'm not dying
 
12:14
So it was just as kind of going, oh my goodness, this is nobody knows what to do with my daughter. So, you know, no, I didn't have any experience modeling or in this industry. And when we first started Kelo Inclusive, my goal was we really thought we'd stay in our lane of modeling, like print modeling. And I thought to myself, you know, if I can get disability, you know, in some big marketing campaign or on a few more runways, I will have succeeded and I will feel good about that.
 
12:42
But it very quickly grew into more than just modeling. I mean, we've had casting directors for TV commercials and voice acting and, you know, the city of Edmonton and, you know, a children's hospital and a university, a major Canadian university reach out. Like everybody needs to be more inclusive. And if you have imagery attached to your organization, which almost every organization does, people or folks are interested in showing that.
 
13:08
that in a real authentic way or at least starting to have that conversation and the resounding message we keep hearing is, oh my goodness, I'm so glad that an agency like yours exists because we wouldn't, we don't know where to go to find this. So well, and that's, and that's a good point because as the communications manager here at DDA, I'm often getting emails from casting directors that are needing people with disabilities and our family, our families to fill certain roles. So
 
13:32
I'm more than happy to send you some emails if you need that. Please forward them on. We are, I mean, truly, I mean, okay, so then we start, then we get into the, because this was the other side as our agency and our role as agents has sort of expanded because, you know, we're truly not just, I mean, we provide disabled talent, no question. So if there's a casting call or something that needs a person with a disability, we want to fill that and are happy to and have lots of people that we've connected with now to be able to do that. But the other side of it too is like,
 
14:01
there's been such a systemic barrier to entry in this industry. I mean, I've heard lots from disabled adults being like, I never even considered modeling or I never even considered acting because, you know, I'm in a chair or, you know, I have, you know, I, I'm missing a limb. I spoke to a woman who we just signed recently, who is a gorgeous, like she's beautiful. She has modeling experience. And she sent us all these beautiful professional images and we couldn't see her limb difference. And she said, well, I was told to hide it. And this was, I'm talking like within the recent past, like the last few years. Um, and so,
 
14:31
It's like we are having also to fight that kind of systemic barrier to entry as far as training goes, right? So it's not just about filling the disabled roles that come up. That's step one. But what we really hope is that we could put our talent forward for literally any role. We just are also really focused on training and making sure that our roster has opportunities to engage in accessibly minded training opportunities as well. And you know, as we grow that's something that
 
14:59
conversation we've been having with folks, people with a vested interest in it because it's also important to see disability is not just something niche or a box to tick, it's also like if there's a lead role for a film.
 
15:17
literally anyone could apply for it. It doesn't matter if you're a person of colour, if you're in a wheelchair, if you're, you know what I mean? So. Yeah, absolutely. And so, suffice to say that, I mean, my question was, you know, how has the response been from the business world? I mean, it sounds like it's been amazing.
 
15:34
Oh yeah, like overwhelming I would say would be an appropriate word in the best possible way. I mean like I said, we didn't really know, we had a real sense that there was a gap that needed to be filled, but as we connect with more folks across the country and are getting our name out there, the response has been just awesome. And from people that we wouldn't really have expected, like when we get a call from a casting director, a major casting director, that is exciting to us and exactly what we hoped for.
 
16:04
us to come and present and do a you know a discussion on on true inclusion and help with the up and coming you know students in their media and marketing um you know undergrads and how we can support that like that is the new and exciting stuff that that we didn't expect to have come out of this that that really you know kind of makes our our hearts sing a little bit about the fact that this isn't just
 
16:25
You know, this isn't just ticking boxes and filling roles. This is also about having a bigger conversation about inclusion. It's not not just a one off. Yeah. Now, are you how many since you started? How many how many clients do you have on your roster at the moment? We actually just counted up. I think we've signed just shy of 100 Canadians across the country. And we have.
 
16:48
Connected, I don't think I have a good list for you, but as far as a list of clients, I mean, just, I mean, it's only, so it's interesting timing-wise, like we started this in 2022 and really built some momentum over the first six months and now we're into the tail end of our first year and that's the last two or three months has been really, we've started to just see a real shift in people from all over, clients looking to connect with us and it's like I said, it's everything from, you know, like government organizations to
 
17:16
you know, clothing brands to, you know, large international campaigns. We, you know, one of our big exciting moments was we worked with L'Oreal and Lancome on an accessible technology for their, for some cosmetics application for people with upper limb weakness. That was the lipstick.
 
17:34
Yeah, the HACTA. You saw it. So Natasha is one of our models. Oh, is that right? Wow. So, you know, just again, and when we got that, you know, when we got that call, when the agent reached out to us regarding that, you know, we were obviously very excited and hoping to...
 
17:52
you know, meet whatever need that they had, but it's really spoke to the fact that how much of a need there is the fact that, you know, we were getting a call, an international call to help fill a role for disabled talent was really, was really again, just confirmation that we're doing the right thing here. It's clearly needed. Yeah. And that was my next sort of my next question. Any big names? Yeah, the biggest are actually, yeah. Yeah, I mean, absolutely. So you know, we started with some small local businesses here in Edmonton to do some test shoots and our lead photographer is based in Vancouver.
 
18:22
and we've done some local Vancouver brands, but some of the bigger names, I mean, we've done some collaborations with Vessi, Lulu Lemon, we've done, Lon Coleman L'Oreal was a really big one. We've put our, there's a camping store in Edmonton, Track and Trail, Poppy Barley, Sweet Jolie, I mean, honestly, there's just a number of people. UBC, City of Edmonton, lots of folks have been connecting and have projects either on the go
 
18:52
have completed already and every single time. CBC is another one, we wreck the cast of 10 wheelchair users based in Edmonton and there's a reality show airing on CBC Prime Network at the end of this month, February 24th, it's called Push. And it follows the lives of 10 wheelchair users in Edmonton and we represent the cast of Push. And I think it's gonna be a really groundbreaking and exciting show for folks, cause it just shows.
 
19:19
them as human in all of their raw real lives and I think it'll do a lot of justice to the for to and for the disabled community. Well, now it with with you've got 100 people are you still looking to expand? Absolutely. I mean,
 
19:35
It's a good question. One of the values that we care a lot about, and I say we as my partner and I, Austin, Austin is my life partner and business partner, is the personal connection with the folks that we represent. I know with the small bit of experience I had with the agency we had Kelty first signed with, we felt like a number, which was unfortunate. You didn't really know who you were getting on the other side of that email. Nobody asked questions to get to know what Kelty was all about. I vowed that that is not the kind of
 
20:05
it comes to disability, there's so much nuance and uniqueness to everybody's situation. I want to have a pulse on that and for people to know that when they email me, they're getting my response and they know who I am. So is there a limit? I mean, I'm sure, or as we expanded, can hire more people that we trust to make those connections with folks on our roster. I like to say no, there really isn't a limit. As of right now, it truly is just Austin, myself, and we have a lead photographer who
 
20:34
you know, organizes a lot of the inclusive projects and consults on a lot of the inclusive projects, but right now it's just Austin and I. So we're getting busy. Austin, his...
 
20:46
He stepped away from his profession of he's an engineer by education, but did a lot of strategic management consultant and he's stopped doing that and doing KELO stuff full time. And I'm my profession is a high school teacher and I'm teaching part time in the mornings. And I don't think it'll be too, too long. And I'll be also having to step away from teaching. But and hiring some more agents and hiring some more agents and people that we, you know, that we trust with getting to know and doing right by our talent.
 
21:16
sort of the only game in the country or is there another organization that does the same kind of thing? It's interesting. We are the only one, we are the only agency in the country that is focused exclusively on disability and visible difference. There is, there are definitely agencies that have been around for a long time that have inclusive divisions of their agencies and they have things sometimes they call them things like special projects.
 
21:41
I can't say I love that name, but anyway, special projects or inclusive vision. But I had a really wide industry, a gentleman in the industry who was kind of trying to, in a loving way, poke holes in our business model and say, you know, so what's to stop a modeling agency or a talent agency that's been around for like 30 years just swooping in and doing what you guys are doing? And I just looked at him deadpan and I said, disability scares the heck out of people. I feel very comfortable in this space. And
 
22:10
I can't say I don't have more to learn, but I feel very comfortable. And for most folks, it's just not a comfortable space. So in 10 years from now, it may well be, but I think that we're feeling relatively confident at this moment of being able to become the true inclusion experts in the industry in Canada. I mean, that's how we really hope to position ourselves. And perhaps there'll be agencies that follow suit. There are some international agencies that are doing
 
22:38
What we're doing that have been around a little longer, but they have not seemed to make any headway in Canada thus far So it seems it seems like we've got a bit of a bit of a first movers advantage here and we hope to do right By it. Well, that's great now Obviously building something doesn't come up come without challenges. What are some of the challenges or frustrations you've had to face so far?
 
23:01
Well, I think for me it's capacity right now, which is a good problem to have, I guess. You know, like I said, you know, as we connect with more folks across the country, to be able to have all the time that I need to dedicate to every person is becoming a little more challenging, but something I'm not willing to give up. The other challenge, which I guess is a bigger picture and I think hopefully will change, it's just, you know, people, not everybody is on board with...
 
23:29
this idea of authentic inclusion, there's still a lot of social stigma and attitudes that need to change. So I think as much as I like to think we're headed in the right direction, there are definitely moments where I'm like, oh, we still have a long way to go. There's still a lot of advocacy work that needs to be done.
 
23:46
as well. The other the other pieces you know from a purely business standpoint like we are set up as a non-profit and we don't run around advertising that not because we're not proud of making that we just don't ever want anybody to you know, misassociate us as a charity helping these poor disabled folk, right? Like we just really want to get away from that and I know people that don't understand how non-profits work might make that that misassociation.
 
24:11
We set up as a non-profit because we know that, well, truly if Austin and I can earn a modest salary and cover what we would have normally been making as professionals in other areas, that would be good for us and we'd be happy. It's not about money for us. It's about changing social attitudes and the hard work in that way is the extra time and effort that needs to happen to do it the right way, to imply for the right kind of grants that are going to...
 
24:38
further what we're doing to have the advocacy conversations. You know, it's just a whole added layer of things that need to be done. And I just want to divide my time equally among everything and it's capacity right now, I would say would be the biggest challenge, but really hoping as we grow, we're still relatively young that we're going to build capacity as soon as possible and be able to hire on folks that.
 
24:59
that want to be on board with what we're doing. Now I just wanted to go back a little bit, talk about sort of attitudes and even personal journeys. Your Instagram account, you talk about being better, not necessarily being a better mom, but a better person and how we address and relate to people who have a disability. How has this journey been for you? Oh, that's a great question. I would say it's been a bit of a fast and furious one. Like I can tell you,
 
25:24
For example, like I think I said earlier, I think I spent the first decade of my daughter's life learning about disability through people that weren't disabled. And there's a lot of expertise to be had in those arenas, but what's missing is that lived experience. And when I started to pay attention to people who have disabilities, I just learned so much. I mean, you know.
 
25:46
the small but important things like language choices. I think I referred to myself as a special needs mom for the first 10 years of Kelsey's life and then have this awakening of like, oh, the disabled community really, generally speaking has no interest in those euphemisms like special needs and handicapable and differently abled. They're like, just say disabled. So the little things that matter.
 
26:09
The education I had regarding the importance of understanding that I am the parent of a disabled child and that is my lived experience, but I am not disabled myself. So to insert myself in the disabled narrative, like I know what I'm talking about, is not okay. Like I need to speak from my perspective and my perspective alone, but I think what can happen often to people happens to my daughter. Honestly, I probably do it to my daughter more than she likes, but I'm getting better where...
 
26:38
you become that voice. You say, I know what's best. I was sitting in a medical appointment and a doctor asked a question and I'm answering on behalf of Kelsey because that's my role. And she's looking at me going, it's not your body, mom, it's my body. And I'm like, yeah, good point. You answered the question. And that kind of thing. So that's been a big, big part of it for me. And I also think just to kind of tie it all together, it's just, it's a humility. It's a, as a,
 
27:06
as a Caucasian middle class white woman with an education, like I didn't have a real experience with the minority. I didn't really have lived experience through the lens of a minority group in our society. And then I had Kelsey come into my life and I got a real window into what that means. And does it mean I understand everything? No, but it's given me like an empathy and a humility about the experiences of so many other people in our world. And I...
 
27:33
I'm just so grateful for having had to look through that lens. And, you know, I'm just endlessly grateful. You know, I teach English and when I'm teaching what the word paradox means, I will often say it's something that makes sense but doesn't make sense. And that's just the truest sense of the word for me with disability is, you know, you'd never wish it on a person or a family. I'd never say, oh, I hope, but then at the same time.
 
27:59
I'm so grateful for having gotten to experience and be part of this. Maybe it's appropriate to just share a little story that was so powerful for me with my daughter. Oh, sure. So she asked me in all of this disability advocacy stuff, she asked me once, I would say within the last year, she said, Mom, why am I disabled? And I've told her over the years, there was brain damage that happened to you when you were born. It was a really traumatic birth.
 
28:29
I've explained it to her in the best way that she knows how. And what ensued after was she said, well, mom, when I have a baby, will my baby be disabled? And I said, oh, honey, absolutely not. It's not genetic. It's, you know, don't, no. And she started to cry. And I thought, oh my goodness, what have I said? What have I said? And I looked at her and I said, oh no, honey, your child, you're not gonna have a disabled child. And she looked at me, she's still crying her eyes out. And I stopped her and I said,
 
28:58
Ficalti, do you want your child to be disabled? And she looked at me and she nodded her head yes. And I was like, oh, of course you do. She's like, disability's awesome. I would be honored to have a disabled grandchild. And I'm finishing this conversation going, maybe if we're lucky, maybe you'd have a child with a disability. And I had this moment of, doesn't matter how much learning you do, like the deeply ingrained ableism that is in our society, it is so pervasive to the point where,
 
29:29
And this moment for me of just like, of course, she'd want to have a disabled child. She's going, I'm disabled. I'm awesome. Like, why would I? Of course. And, you know, so that was just a huge moment for me that kind of put all of this learning and my journey together going, I need to check, we all need to check our, and our, you know, implicit biases at the door and start to just open our eyes and think differently about all of this. So I'm just doing everything I can to help everybody in that journey. And absolutely. And from the perspective of a high school teacher, I mean, and, and
 
29:58
given what you've seen and what you've been through and in the education system, are society's attitudes getting better? Is inclusion working? Great question, yes. On a really high level, everybody's having conversations that we were not having a few years ago. I'll give you one quick example of the high school, from the perspective of a high school teacher, it was in my lunch, kids reading lunch in my room and.
 
30:21
you know, it's the melee of one shower and one girl stands up and I don't know the context but she looks at her friend she goes, oh he's a cisgendered white man he doesn't even know his privilege and then she like walks out of the room and I was like oh man in grade 11 I would not have had the language, or even social awareness to say something like that so
 
30:41
Yes, I think that we're having these conversations that allow young people to recognize these things. And I was really proud in that moment to hear a young person talk like that. But I'll also follow that very quickly with we're having these conversations, but disability still often gets left behind in those conversations, you know, like. And so I just, you know, when we talk about sexual diversity, gender diversity, body size, diversity, skin, like cultural, ethnic,
 
31:11
skin, color, diversity, all of it, disability isn't always part of that conversation. In fact, it's not part of that conversation very often and we really hope to change that, that it becomes part of that conversation. Yes, absolutely. That's vital. Do you have anything else to add today?
 
31:29
No, just that I'm grateful for connecting with you and appreciate you having me on your show today and these conversations are just so, so important. So I'm just really, really grateful and want to thank you. That's been fantastic having your insight. You have been listening to DDA's Encouraging Abilities podcast. Our guest today has been Katie McMillan, founder of Kelo Inclusive Modeling Agency in Edmonton, Alberta. You can find them at keloinclusive.org. As she's mentioned,
 
31:57
They have clients from all over Canada. So if you've got the acting bug or the modeling bug, and you're part of the disability community, do reach out. Katie, thank you so much for joining us today. Thank you so much for having me. This was a pleasure. I'm your host, DDA Communications Manager, Evan Kelly. Tune in next time. See you later.
 

DDA Talks Accessibilty with Brad McCannell

B.C. is a leader when it comes to accessibility. Just ask The Rick Hansen Foundation's Brad McCannell. However, attitudes still need to shift in order to guarantee inclusion for everyone, and that means making noise so everyone is heard. 
 
TRANSCRIPT
 
DDA Talks Accessibility with Brad McCannell
 
00:05
Hello and welcome once again to DDA's encouraging abilities podcast. I am your host, DDA communications manager, Evan Kelly. Now one of the big topics we like to talk about is accessibility. It's such an important topic because many people don't realize that at some point in their life, they might find themselves with limited mobility, limited vision, hearing, even cognitive ability. It's going to happen to all of us. Joining us today is Brad McKennell. He has the experience.
 
00:31
uh... and a resume that's gonna take me a few minutes just to read so i'll try to do the abridged version now brad's career uh... inac access consulting began in nineteen ninety when he formed uh... canadian barrier-free design that cbfd and has created to fill the gap between the application of building code in the real needs of the community of people with disabilities he himself became a c six seven quadriplegic after a car accident on
 
00:59
So he does have his lived experience. He uses a wheelchair and a service dog on a daily basis. Today, he finds himself the vice president of access and inclusion for the Rick Hansen Foundation, a member of the International Paralympic Committee's Access Working Group, and was recently appointed as the director of the Accessibility Standards Council of Canada. Additionally, his consulting has been sought by the Vancouver International Airport, Airports Council International.
 
01:27
the project advisory panel of CSA housing standards and the Vancouver 2010 Olympic and Paralympic Games. He was appointed to the newly struck BC technical committee on employment accessibility. And that was fairly recently. Now today at the Rick Hansen Foundation, he was tasked with developing an industry standard certification program that would be used as a guide to creating more accessible environments. Now that would be the Rick Hansen Foundation accessibility certification.
 
01:55
RHFAC, that's a rating program that has been rolled out nationally even to develop common methodology and common language for professionals working to do to develop access for people with disabilities in the built environment. He is, I'm not done, he is the recipient of the City of Vancouver's Access and Inclusion Award 2010 and the Canadian Paraplegic Association's Award of Distinction. Okay.
 
02:23
Brad, I think I'm done with that. Thank you very much for joining us today. Gosh, I'm exhausted. You're exhausted. It's quite a list, and it's quite an unbelievable list of accomplishments and awards. It's really, really impressive. Now, having been in the field of accessibility for almost 30 years, what are some of the major changes you've seen in BC's approach to accessibility? Well, first, let me thank you so much for this opportunity. It's a real pleasure to speak with you today.
 
02:53
I've been a professional access consultant for 27 years, but I've been a member of the community of people with disabilities for 43 years. So my experience is both personal and professional. And having said that, the difference is night and day in terms of the approach. I mean, British Columbia has been a leader in meaningful access for decades. I think it's important to recognize the history here. You know, most people don't even realize.
 
03:21
the history of leadership that we've shown here as a province and as people with lived experience. It started with the great Ed Desjardins, a personal hero of mine. This guy was something called G.F. Strong in 1948. That was the first spinal cord rehabilitation center in North America. So there's real history. Ed got the very first accessible parking space requirements written in the building code in Vancouver here in the early 70s.
 
03:50
I've hired this stuff for decades and I think understanding that and understanding our history is part of knowing why BC is a leader in the whole country in this issue. I think Sir Paul would need to be congratulated for the leadership in developing the environment, but in terms of changes in the approach, I would say the biggest change is there's a much better focus on inclusion now, understanding that wheelchair users, the focus has always been on wheelchair users.
 
04:18
and it may seem odd, probably for a wheelchair user, but gosh, no, we've dominated the discussion, we've dominated the codes, we've dominated the regulations. Now, if you ask somebody in the street about disability, the first thing that pops in their head is a wheelchair. The international symbol for people with disabilities is a wheelchair, and yet we're somewhere south of 40% of the population with disabilities.
 
04:41
So what's heartening to me is that discussion is now changing to really include people with hearing loss and people with impairment, and people in the neurodiverse community. That's a huge thing, but it's a much bigger challenge. Yeah, of course that would be. Now, do you think there are some places where BC needs to improve just off the top of your head? Where have we missed the mark a little bit?
 
05:01
Oh, well, it's really easy to poke holes in projects because everything was built using a code minimum access strategy. And as I said, if you're meeting code, you're not meeting the needs of the community. It's just vuln It's one of the biggest problems in the community is what we face in terms of the built environment is the idea that meeting code somehow makes you accessible. And don't just start, that's just not a reasonable equation.
 
05:31
and architecture schools don't teach accessibility, don't teach universal design. Museum schools, engineering, nobody thinks of it.
 
05:39
It's not part of the curriculum. It's very weird to me. I think you need a doctor trying to learn how to be a doctor without understanding nutrition. How can you know what to do if you don't know what goes into it kind of thing? No, no, exactly. Well, that's why the RHFAC was created, because we need that extra tool. The industry needs that tool. So tell me a little bit of how that certification, the Rick Hansen Foundation Accessibility Certification came about.
 
06:08
Well, we knew we needed a reference standard for the industry, but code wasn't cutting it. Code couldn't possibly see that. Our job was to tell people what's actually there and who it affects.
 
06:21
So we're not the code police. We don't come in here and tell you all the things you did wrong. And in fact, one of the critical parts of our program is to identify and celebrate access where it's there. Too often it's just taken for granted. So we want, part of our rating system is a section on innovation. So if you've done something really cool, we want to celebrate that. So the RxFAC is designed just to create a baseline specific to your facility.
 
06:47
It's a place to start. It's not an end, it's a beginning. You can't help you fix things unless you know they're broken. So how is the certification then sort of employed, if you will? Well, it's a process. To begin with, it's not another checklist. It's a rating system, it's a weighted scale that can only be administered by a person who's taking the RIT training and understand
 
07:17
the various lines. But the process is a skilled professional, a large FEC professional will come on site and use the rating system to literally go through your building and see what's there and on the weighted scale determine what level of access is being provided overall. And one of the most important keys to our process is that holistic approach. What's happening now is people are working on feature-based access. So
 
07:45
facility operator will grab a checklist from somewhere and they're everywhere. Everybody's got a checklist. I hate checklists. But they take the checklist and they run into the facility and they go to the washroom and they say, oh, look, we've got grab bars, check. We've got a lowered urinal, check. Paper towels in the right spot, check. Okay, well, you've got a pretty good washroom. And then they run over to the elevator and they say, oh, look, we've got a light colored floor, check. We've got handrails, check. We've got Braille symbols. Oh, it looks like we've got a pretty good facility.
 
08:14
No, you don't. You got a half piece in the wash, even a code elevated. Nobody checked the reception, nobody checked to see if someone could actually work there. Nobody checked if there was any kind of emergency egress for people with disabilities. It's looking at that whole experience. The RHFAC takes it from the moment you get out of your car or off a bus or just walking off the street. You go through the building, you work there, you operate there. It takes the whole experience of the user under consideration, not just whether you can go to the bathroom or not.
 
08:45
Now, when it comes to someone, say I'm a developer and I'm making a community center or something, and I get the Rick Hansen Foundation accessibility certification person coming in to check it out, am I obligated to then adhere to all the recommendations? Oh, that's one of the powers of the piece. You're not obligated to do anything. If it's designed to inform you on what the current status is exactly,
 
09:14
And so it's a process that professionalizes the delivery of accessible design to start with. It creates an inventory of access on the site. It creates incentives for building owners and operators. It places improvements into the long-term planning process. And most importantly, from my perspective, it normalizes access considerations as part of a normal design and operating process. The great thing about it is if you have an R-X,
 
09:42
reading done, you remain in control of that. We would never publish that. We would never take that information and use it outside. It's your information on your facility and it's designed to help you plan and move forward. Now, have you heard of any developers sort of pushing back against some of these ideas or changes? Oh, sure. Yeah. It's an industry that hates change of any kind. I mean, change always costs money.
 
10:08
And one of the problems we've got is as we increase the requirements in basic code and standards for the industry that can be perceived as just more regulations, more things they have to do. And what we try to help them with is the idea of the return on investment. This is where you do create accessible buildings and maybe more importantly how to change the culture within your organization to not see it as just more regulation.
 
10:36
and rather see it as an opportunity. And it's just a huge opportunity, both in terms of making money. We always say that a barrier to a person with a disability is a barrier to making a profit. But also, not just from a customer base, from a workforce perspective, everybody knows that the population is aging, but they're not equating that to the fact that their workforce is aging. And in order to keep that workforce working, changes are gonna need to be made in the built environment. So...
 
11:04
Best you know what your built environment is supplying right now.
 
11:10
And is there any other programs out there like this particular certification program or is this breaking new ground here and across the country? Oh, this is definitely new grounded and internationally as well. Most of all the solutions are code-based solutions. And that's problematic on a number of ways. Relying on codes, typically it takes an average of seven to 12 years to get a code changed.
 
11:38
in Canada, depending on where you are and who you are. And it's so common in fact, and it's so entrenched in the system, they have a name for it, it's called code cycle. So they're always 10 years behind, no matter what they do. And that's the nature of codes. And frankly, that's right and good because the industry needs that stability of code. What we're doing is coming in and saying, here's the real needs of the community. If you want to access...
 
12:04
you know, the tremendous work force that's available. We hear this all the time, watching the news, you watch an owner, oh, I can't find anybody to hire. Ringing their hands, touching their pearls, and they're, oh gosh, what are we gonna do? Well, 57% of our community's unemployed. Look, you can't find people to work for you. Where are you looking? The whole nature of this thing has to be...
 
12:28
When you make these changes, you're making changes that are profitable both on the customer side and the human side. Yes, absolutely. And that goes to my previous introduction. We're all getting older.
 
12:44
and arguably living longer and we might need to work longer. So these things need to be in place. Now we've talked a little bit about universal design. Is that really the way forward? Is that level of sort of perfection in your mind possible? Oh yeah, I mean, don't think of it as perfection. Just think of it as common sense.
 
13:08
Unquestionably, universal design is the way forward. With the caveat that the whole concept of universal design is an aspirational goal. These are principles to be followed. They're not hard inside of schools. So how that gets interpreted in the built environment is going to be different for every single site. Every built environment is unique. Every occupancy is different. It has to be recognized that the idea of fully accessible, when we hear it's laughable.
 
13:36
There's no such thing as fully accessible. You can't be fully accessible. You can't be accessible to all people with all disabilities and all occupancies at the same time. It's an unattainable dream. But what that leaves you with is setting target levels of accessibility, understanding who you are serving.
 
13:59
who your customers really are, who people with disabilities really are. And spoiler alert, it's not about a few wheelchair guys. Like you said before, everybody's gonna experience disability and so forth. It doesn't matter whether you do a face plant and you're a teenager and you end up in a wheelchair or you're 65 years old and you need a walker and a hearing aid. You will experience disability and really quickly. When, for how long? Yeah, absolutely. So how, so can a developer get,
 
14:26
get their own certification and then build? Or is it someone that's not in the company that has to come forward and do the certification? No, the only requirement is the person registering the rating on the registered state has to be an RHS distance professional. So for example, you could take the course and assess your own property.
 
14:54
Well, the sales safe on that for us is in the process. Once an RHFAC professional has posted something in the registry, it immediately goes to the CSA, CSA Outbreak Registry, the third party, and they vet it for accuracy. And then it goes to an adjudicator who looks at it and makes sure that the RHFAC professional wasn't this low and small. So you can't just say, hey, it's good old testing.
 
15:22
It goes in, our indicators look at it, they review the pictures, sometimes video as well, and they establish that yes, that is in fact a gold building, or yes, that is 80% on our scale. So that allows you to be able to assess your own building. And what's important for us there, we want as many people as possible to take the RITFAP training. That's the cultural shift we're looking for.
 
15:47
It wasn't enough just to create a bunch of access professionals. We've got access professionals all across the country. Really good ones. What we needed was to shift the actual existing culture, the existing industry, the existing architects, planners, and building inspectors, and help them understand the real built environment as a speak of disabilities and understand it's not just about a few wheelchairs.
 
16:13
And so the goal of the developer, whoever is doing building, is to get what you mentioned was a gold rating? Yeah, and that could be different from building to building. So in our program, if you get more than 80% of the available points, then you're in gold territory. Some people may get that because they're just exceptional for people with vision loss. Some people may get that because they're exceptional for people with hearing loss.
 
16:39
The object of the extra guide is to get more than 80% of the available points on our scale. And just by way of comparison, if you built a commercial space and followed the Ontario Building Code, accessibility provisions right to the letter, then you'd probably get up around 40% on our scale. So half on our scale, 60%.
 
17:03
So it has to be better than that, but getting to that level is not really difficult once you sort of look at the system and look at the low-hanging fruit, as we call it. So much of creating access is really easy, really inexpensive. It's just a matter of knowing that you need to do it. I want to switch gears a little bit, but is there anything else you'd like to add in terms of that sort of certification piece? Oh, I guess how important it really is.
 
17:32
It's a way of measuring how we're doing in terms of creating meaningful access. So it's a measuring tool, but the real power is the training courses. The great advantage we have is once we start showing professionals in the field barriers to people with disabilities, once they start seeing that, they can never stop.
 
17:55
And so it's really quite heartening because it really is. It's a total ITV experience when people are taking our course and then come out there exercising. And once they start seeing all that stuff, that I've got like a disciple of, I can move on to the next week because that's the culture of shift we're looking for. So I just implore people to take the training, whatever they can. I guess I should ask, for builders, developers, whoever, how do they, do they just get in touch with the Rick Hansen Foundation to get the course going?
 
18:26
Yeah, rickhanson.com, best place to go. There's lots of links there on accessibility. And there's kind of two levels. There's the base level, which is called Accessible Spaces 101. And that's for people who are interested in universal design. And I just want to understand that a little more. But there's also the professional course, which is the Rick Hanson Foundation's Festival Certification Program itself. And that's restricted to industry professionals, so architects, engineers, people with experience in the built environment.
 
18:54
And that's the professional side of the thing. But there's two ways to come in. The best portal of all is RickHanson.com. There's so much stuff on there. It's very educational. I actually lied. I do have another question. How has this been received across the country and globally? Well, I'm really, really pleased to say that it's been accepted quite well.
 
19:20
nationally, it's a process. We're actually, like I said earlier, changing an industry that doesn't have any kind of change. But what's happening is people are seeing the value in it. They're seeing how by using the RHSC, it focuses their energy and puts the whole process of accessibility into the normal design and planning process. It's that idea, if it's measurable, it gets fixed. If it's not measurable, it just becomes an anecdotal story.
 
19:49
creating the common language, creating common methodology means that we're all calling access the same thing, so it's measurable. That has found great footing across the country. And for example, the new, as you may be aware, the repairing and rebuilding the parliamentary precinct, parliament buildings in Ottawa and everything has to be read and read. They're going to use our RGFIC gold as their standard. It's that kind of traction that we're getting went across the country. Halifax is doing amazing things.
 
20:18
Vancouver's doing amazing things. So having that kind of uptake has been really heartening, but even more heartening is when we took the program to international conferences. And everybody said the same thing. They said, my gosh, nobody's doing this. Everybody's taking a code approach. And the problem with codes is, you know, it's an old joke. It's like the slogans will continue until morale improves.
 
20:44
You can't just keep making the clothes harder and harder than the penalty sufferer and topper without educating the industry. The industry is paying for all this. So rather than have them feel it's just, oh gosh, it's more regulations and more hassle, the opportunity here is to show them the opportunity to make money on this deal. How about they return on investment? What's in it for you? And it's not just all altruistic and feel-good stuff. It's dollars and cents.
 
21:14
That's fantastic. It sounds like you do an incredible job. So your history here in BC goes back obviously many years. You've been working on the 2010 Olympic Games as a consultant. Tell me a little bit about that. Oh, that was probably the high point of my career to be honest. It was, I'd gone to Beijing in 2008.
 
21:37
which was one of the largest international Paralympic Games events for participants. There were well over 4,000 athletes there. And that was a big undertaking. But to do that same thing in winter is a much different proposition. But Van Ock was fabulous. The Vancouver organizing committee called Van Ock. And when I approached them at the bed stage, and I said, we should include accessibility right from the very beginning there.
 
22:06
And to their credit, they got on board right away. But we were doing things at that event that never been done before in the Olympics. For example, on the downhill ski run, we were able to put 200 people with disabilities along that route, outside, watching the actual ski event, watching the high quads.
 
22:27
event-dependent quads and wheelchairs parked on the side of a mountain to watch an event. And it was fabulous. And we were able to do things unheard of in the presentation of the Winter Games in particular. And so for me, it all came down to the end when Jacques Rignes, who at the time was the head of the International Organizing Committee, and he always designated the games, each game, every game is the friendliest games or the most wonderful games or the best games.
 
22:56
He designated Vancouver's games as the most family-friendly games ever. And that's me. That's universal design. That's that idea that if we can make it work and face and fund for young people and old people, everything else in the middle will work itself out. And we were able to do that in unprecedented terms. It was a huge success for me. Wow, that must make you feel quite proud.
 
23:24
So how does your work with the Rick Hansen Foundation differ from your work with the Accessibility Standards Canada Board? Ah, well that's, I love the apples and oranges, that the ASC, Accessible Standards Canada, is mission to design standards to support building folks across the country, and the idea is to get federally regulated.
 
23:50
businesses, operations to align to this code. And then they get the provinces to align to that again. So we have a standard consistent messaging across the country. And that is important as a code approach. But as I said earlier, that's only half the problem. We need strong codes, we need strong enforcement and we need significant families for people who don't follow the code. You need the big stick, but that by itself won't get it done.
 
24:16
If you want real change, you have to shift the culture. You have to get people to understand who this is about. It's not about a few wheelchair guys. It is about you, your mom, your family. Because everybody's going to experience this ability at some level. So making the built environment work is the absolute key to everything. The need for accessible transportation is lessened if there's no acceptable destination. And if you can't get in a building, then the best employment equity program in the world won't work if I can't.
 
24:46
I can't get into buildings with a lot of people. Getting this built environment sorted out is a single step. But it takes two things. It takes really strong codes, but it also takes an educated industry. An industry that understands your put-on investment and understands that this is a huge opportunity. This isn't more regulation. This isn't onerous. This is a chance to cash in. So some of this barrier breaking is just...
 
25:13
the changing of attitudes i mean according to your linkedin bio you say the biggest barrier to success for people with disabilities is the overall attitude of society the society's assumption because you have a disability it means you can't achieve as much are we are uh... society's attitudes getting better is inclusion working all yeah it's because it's becoming personal people are seeing it at home you know we did in angus we call
 
25:41
In the past, it was, oh yeah, taxes is good, I think it's good for those people, it's good for someone else. This was the first time that 30% of the respondents came back and said that they saw it in their own lives. They saw the house that they planned to retire in, when they looked at it again, realized it's nothing but tears. And so people are starting to take it personally at that level and that's where the real change is coming from. Disability taxes roughly 50% of the population today.
 
26:10
Today, it's not something that's going to happen down the road. We're not promising things in the private. You know, it's interesting how we get to that number. It's, you know, right now 24% of the population reports having a significant disability. And the key word there is reports, because there's tens of thousands of people who don't report their disability for a lot of really good reasons.
 
26:33
But you know, let's just take the 24% per second. Every one of us has at least one other person in our lives. Mother, father, sister, brother, neighbor, lover, best friend, even if it's a paid caregiver, even if it's a paid lover, we all have at least one other person in our life that also benefits from an accessible environment. And that's whether it's because it's easier for me, therefore it's easier for them.
 
27:00
It's also safer for them to help me, it's a better environment for them to assist in. And they remain able-bodied people instead of hurting themselves, getting in and out of the bathroom with them. And so, that's where the payoff is. And it sounds easy to accomplish. It sounds like just changing that attitude and changing our approach to things is not as difficult as people would think.
 
27:25
No, no, it's just what the key to it all is, is conversation, conversations like this one, helping people understand what access is really all about. And the idea that it's about a few wheelchair guys, and we fight that every day. Every presentation, I kind of start with that, just to help people learn to stand that we're not talking about a few wheelchair guys.
 
27:50
Now, I guess the one thing that's sort of been highlighted in the news a lot lately though, in terms of industries making changes, is airlines. There's been news stories about people having their wheelchairs lost or damaged beyond repair, and some of these wheelchairs are really expensive, like three, five thousand dollar wheelchairs. As a consultant, so like what sort of policies would you like to see in place to ensure that this doesn't happen?
 
28:20
Well, first off, your estimation on the cost of wheelchairs is way low. I have a power chair and it's $38,000. Wow. And that's pretty typical. So people who are vent dependent, people who are vent dependent have much more expensive chairs. And that's why it's so critical when a piece gets damaged.
 
28:42
Yeah, I think the latest piece I saw just the other day, somebody destroyed a guy's wheelchair, and they gave him what we call an active duty lightweight. It's the airport chair, it's a little aluminum thing. They cost about 600 bucks. So, you know, my chair is 38,000, that's about, that's a lot. But they give you that chair and they're thinking, okay, he's got a wheelchair. What's the problem? The problem is, you know, wheelchairs are very specific.
 
29:11
You know, they're prescribed for you. The dimensions are exact. How they hold you, where your back is to be, where you're vent dependent, how all that works. It's all critically and personal. You know, if you buy a wheelchair, I buy a wheelchair for $38,000. If I tried to sell it now, I'd get raising $1,000 for it. Because it's made for me. It's not made for anybody else.
 
29:31
And so it's understanding it. And so the airlines have got to figure this out. Now, fortunately, there's a real big movement. I'm not sure if you've heard of it. It's called the All Wheels Up. And it's a group of people who recognize airlines wrecking equipment has become way too common. I think the last that I heard was if you bring a mobility device on an airplane, there's a 20% chance it would be harmed or destroyed in that trip. So that's ridiculous.
 
30:00
I don't know the airlines have to understand how critical these are these are just like something you just replace well No, exactly. They're an extension of you aren't they like that's not just a chair. Oh Yeah, and they're not interchangeable Like I Rick Hansen's my boss. I can't use this book here But I was I was making there's a lot of Excuse me. There's a effort called all wheels up and that's what they'd find was they
 
30:29
We figured out a way you can take your wheelchair right on the airplane and just use the same kind of attaching device that using cars Whether it's a Q-strain or a strap-down system. So you'd stay in your own chair and you get on the airplane that way That would eliminate Giving up your equipment it would give people their own seating and a long trip which is really important for most of us
 
30:51
But it's an idea that's really come. The thing that held it back for so long was there was no crash testing available, so we wouldn't know the real results. Well, that's now been completed. So it's a completely viable thing. Now the hard part is to get airlines to give up the first cabin and move it to the back. Because the only way to work on an airplane is we can get in the first slash, but I can sit in the front. I think it's coming, I think it's inevitable. I don't think the airlines can keep working on equipment like this.
 
31:21
I mean, they got enough problems without wrecking our stuff. Yeah. Well, it seems like there's enough talk to moving this stuff forward, so that's good. You know, you talk about your chair being worth $38,000, which is unbelievable. Now Canada's been moving forward on the proposal. Yeah, I think that's it. I think people who are sort of like typically developed or haven't suffered injuries and then lack their mobility don't quite understand how costly it can be to have a disability.
 
31:51
So with that said, what are your feelings on the proposed Canada disability benefit that's still inching its way through the government? Well, inching its way through indeed. But it's a complete game changer. Like you say, people don't understand how much it costs to have a disability. At the risk of being way too personal, I could ask you how much does it cost you to go to the bathroom and pee?
 
32:19
Not a whole lot. Cost me five bucks. Really? Every time I go. Six hundred dollars a month I have to spend in catheters. And that's not covered by anybody. That's out of your own pocket. Wow. You know, if you want to go buy a Honda minivan, it's going to cost you around thirty-five thousand bucks. But if I want to go buy an accessible Honda minivan, it costs around ninety thousand bucks.
 
32:43
If I want to go talk to a lawyer, all I have to do is pay the lawyer. But if you're deaf, you also have to pay for an interpreter. And on top of that, just to add insult to injury, you have to pay GST on that. You're being taxed on your need for an interpreter. So all these hidden expenses around people with disabilities are having to pay.
 
33:06
having a reliable income, having a little more in the pot to work with, you know, windfall benefits for people. This is survival. And so it's critically important and yes, it's inching its way through and it's so vexing to see how long it's taking to, to me, remedy the obvious. Yeah. That's, that's, you know, that just brings that right down to reality. It's, it's, it's kind of scary.
 
33:33
So we're just about wrapping up here, Brad. What can the general public do to really foster an inclusion and accessibility from your point of view? Oh, just demand more. Don't go in the back door. If the front door is not accessible, don't go there. Don't go to noisy restaurants. Insist on alternate formats like large print and plain language for documents. Don't be quiet about it.
 
34:02
You got to make sure the rest of them knows why you don't want to go there. You have to make sure that employer if he's offering the position and not offering alternate formats for the hiring of the service, they're aware of both the legal and regulatory pitfalls, but also just how they're missing it. And I find that when this pointed out most often people go, oh my gosh, I never even thought of it. Well, on the one hand, it's terrible because you never even thought of it. You know, like.
 
34:29
with a thing about people with disabilities, right? Where World Health Organization, he says there's 1.3 billion people with disabilities in the world. That's a bigger market than China. Yeah, it is. So how can you keep ignoring it like that? It's just so incredibly vexing. Yeah, there's buying, there's a ton of buying power there, right? Businesses need to learn. And that's that return on investment we were talking about earlier. Understanding those kinds of things and how, yeah.
 
34:59
We've got to stop being quiet about it. You've got to start demanding more access and not putting up with this status quo stuff because status quo is just, we don't have any status at all. No more, it's a nice guy. He's trying to get loud. Yeah, exactly.
 
35:18
So it's, you know, I mean you sounded very, very happy with the progress that British Columbia in particular is making in terms of accessibility and inclusion, but sometimes on a smaller scale, like you're talking about restaurants, it feels like there's still quite a long way to go.
 
35:37
Well, yeah, most of it's education, but it's also the financial reality. There's a perception out there that creating access is expensive. And it's just not. It's probably the most of the stuff we call it low hanging fruit. You could do so much to make your place more user friendly, just by doing simple things, simple things like having a hearing loop at reception desk or meeting with anybody with a hearing aid, that's a game changer.
 
36:02
It's a thousand dollars at the installation, it's cheap. Using wave finding, when people talk about wave finding, they think we're talking about signage, and signage is really important. But there's other wave finding things you can do that reduce stress and make things really easy for people. You can use color, you can use texture, you can use scent, you can use sound.
 
36:24
you can use all these things. We had one problem, this goes back a few years, but the client's office was in a grey building, in a grey door, a grey entrance, everything was grey. People were busy, they had a hard time finding the door. So we planted lavender and then they knew where they were by the smell. So there are all kinds of things you can do that are really simple and really cheap. You know, we call them a can of paint.
 
36:52
One of the most vexing things in our community is the building code works really, really hard at getting people with disabilities into buildings and doesn't care at all about getting them out in an emergency. There is no requirement for emergency egress to be accessible. So the next time you're standing in front of an elevator and you see that little plaque
 
37:16
Where's the little plaque that tells me what to do? In case of fire, good luck sucker. You know, good... So it's that whole idea that... It's a full circle here. Getting me in the building isn't enough. It can't get me out. Yeah, and to me, you know, from someone who works in communications, I think it's... If I was to go into business, and I could market my business as accessible...
 
37:42
you know, in inside and out, that would be a great draw for people. You'd make money. Yes, you would. Yes, you would. And we, you know, we did another Angus repo and we found that already today, 30% of the population is making accessible business already today. It's not future stuff. And so it's remarkable to me that there is any kind of resistance to this. If I'm in the, if I'm in the industry, if I'm building any kind of public...
 
38:10
shopping malls or anything. I don't know how you could not put this at the top of your list because 50% of the population is going to be affected by it. 30% are already deciding. Can anybody decide that they can close their doors to 30% of the population? That's not possible. That would just be the wrong decision, that's for sure.
 
38:29
Now it's much harder in your business. Communication is really meaningful access. Communication is a tough job. Well, yeah, I mean... So many levels of it. Yeah, and you know, we're building a brand new website right now for DDA, and we're ensuring that everything about it is accessible. We're adding some widgets that make it, that give people lots of options. So it's actually quite a good experience, good learning experience for myself even, so. Yeah, and even the plain language movement.
 
38:57
getting documents so that they're not so complicated and that people can understand the means of living. Now, there's lots of people that, you know, that's a specific need for, but that's one of those things that everybody would benefit from. Absolutely. And we all need to keep that in mind when we're doing documents and putting them on the website. The other big thing is to create another ASL window so that if you have a, if you're introducing a program, for example, and you want to reach out to the community, having a little window there
 
39:27
and click on it and they get an ASL interpretation of what's there, it's a game changer. Yep, absolutely. And that's true inclusion. Yep, yep. We will get there, Brad. We will absolutely get there. Anything else to add today? Oh, no, I just want to thank you for the time. As I said earlier, this is the kind of conversation that we all need to have. And just to recognize that it's an opportunity, you know. Right now.
 
39:56
This whole idea of able-bodied males, the design, the building code.
 
40:02
the design parameters are all built around 18 to 55 year old male. That's just got to stop and as soon as you point that out, as soon as the architects, planners, owners, operators, as soon as they see that, they're not connecting the dots. But as soon as they do, it's wonderful what happens. So thank you for helping me connect the dots. My pleasure. Brad, it was a pleasure having you.
 
40:28
Well, you know, this is a very deep well that we kind of brushed over. But almost any one of your questions, we could probably do a show on. Exactly right. Maybe another job. Absolutely. We'll do a few more. Okay. So while you have been listening to DDA's Encouraging Abilities podcast, our guest today has been the intrepid Brad McAnnell, the Rick Hansen Foundation's Vice President of Access and Inclusion. Brad, thanks again. I am your host, Evan Kelly. We'll see you next time.
 

His Name is Nicholas

Inspired by an accident ten years ago that left her brother with a life-changing intellectual disability, a young B.C. artist creates a book about inclusion. DDA chats with Invermere's Veronika Kitzul.
 
TRANSCRIPT
 
His Name is Nicholas
 
00:05
Welcome to DDA's Encouraging Abilities podcast. I'm your host, DDA Communications Manager, Evan Kelly. One of DDA's biggest missions is to create a community where everyone is included and where everyone belongs, regardless of ability. Sometimes that comes down to simply supporting and advocating for those who have the same mission. Today, we are talking with Veronica Kitzel, who lives in Invermere, B.C. Now, Veronica is an artist with a huge amount of talent.
 
00:33
especially working with charcoal as a medium. Now currently she works as a social media manager and artist by day and bartender by night. And while she is the messenger here, she isn't the story, her brother Nicholas is. When her brother was eight years old, he was in an accident in 2012 that changed the course of his life with an intellectual disability. We know that when someone has a disability, society makes it hard for them to be included. So...
 
01:00
Veronica wrote and illustrated a kids book to help foster a sense of inclusion in people at a young age. The book is called His Name is Nicholas is now available as a teacher's aid. Welcome to the show, Veronica. Thank you so much. So when did you get your start in the art world? Is this something you're currently pursuing as your your main profession?
 
01:26
I started drawing in a junior high and learned about art through high school and university, receiving a minor in fine arts with my science degree. Since graduating, I've been working part-time as an artist as more of a side business than a full-time profession. I hope to always find time for art in the future, but I also hope to go back to school for something healthcare related like dentistry or naturopathic medicine.
 
01:50
naturopathic medicine, that's interesting. Now so, Art, is this something that you use your voice with? Is this something that drives you to make a change in the world?
 
02:02
Oh, definitely. The beauty of being an artist means that you have the ability to reach a wider audience and communicate visually in ways that other people cannot. There's nothing wrong with doing art for fun or for the challenge. But when you focus on a subject or a message and get the chance to exhibit it, you can show people a perspective that they may have never considered before. So where do you draw a lot of your inspiration from?
 
02:28
It depends on the project. So when I want to develop my skills, I choose a subject that I find challenging. For example, water, reflections, and glass are difficult to capture. So I've taken inspiration from work as a bartender and drawn a couple processes in mixology. When I was in university and had free range to create whatever I wanted, I drew inspiration from healthcare, combining my scientific and artistic interests, as well as Nicholas. So for example, for a digital art class,
 
02:58
to give hope to people facing brain injuries in Canada. I also created an installation piece with drawings of Nicholas and his story. They were surrounded by a cover with the disability symbol cut out of it. And I did this because I felt like his wheelchair all people see when they first meet him. So I wanted people to physically go up and look through and look past that symbol to learn more about him, his story, his personality, et cetera.
 
03:28
I'd just say overall, I'd say healthcare, my brother, and moving to the mountains have been my biggest inspiration. So before we start talking about Nicholas and the book, where can people see erot? Can they buy it?
 
03:41
Absolutely. Here in Invermere, they can see it at Black Star Studios, Beginnings Restaurant, and Ular Bar. Online, people can see my work on Facebook, Instagram, and direct message me through social media if they're interested in buying a piece or commission. Well, that's great. We'll get a little bit into more into connecting with you later on. So, right from the start here, tell us a little bit about your brother.
 
04:04
for sure. So growing up, Nicholas was always an active kid. He would rather go bike riding, play soccer or play with Lego instead of playing video games. He was well behaved, received good grades in school. And yeah, he was overall just a great kid.
 
04:19
When he was eight years old, he had an accident at school. So the teachers required him to wear a hall pass on a non-breakaway lanyard when he went to the washroom. The floor had been slippery and he fell. The lanyard somehow got caught on the bathroom door latch. Unable to free himself and laugh for a better term, he was essentially strangled until another classmate saw him in the bathroom stall and informed the teacher that something seemed wrong.
 
04:48
So from that, he received an anoxic brain injury because the oxygen was cut off to his brain. The doctors at the hospital didn't give us much hope. They said he'd be abuturable in a bed, on drugs for the rest of his life. They implied that cutting off life support and organ donation would be better than living with no quality of life. Thankfully, my parents did not take no for an answer, especially my mom. She would stay up late every night researching alternative treatments and eventually weaned him off all medications.
 
05:17
So for several years she quit her job just to take care of Nicholas and take him to therapies and treatment. Today, he's still wheelchair bound and has a bit of trouble communicating, but he can say some words and he has surpassed every low expectation that the Canadian doctors have given him. That's pretty unbelievable. I mean, what a testament to your mother.
 
05:45
That's incredible. So, how old were you when he had this accident? I was 14 years old when he had the accident. And so when that happened, how did that make you feel? I felt very powerless and I wanted to take his place because he'd always been such a good kid and he deserved the world.
 
06:04
He deserved everything that my older brother and I experienced, but instead it kind of felt like his childhood was taken from him. I still remember the morning of the accident. He was on his way to the bus stop when I just got out of bed. I thought to myself, I should say goodbye to Nicholas. Oh, that's okay. I'll see him after school. And I have never regretted anything more in my life than when he didn't come home that day.
 
06:25
He was in the hospital for four months and I was still young. So people didn't really know what to tell me. They said he was in this half coma sort of thing. His eyes were open, but they weren't moving much and he could cry, but he couldn't speak. So the hardest part was coming to the realization that he wasn't in a coma. He wasn't going to magically like wake up someday because he was already awake. He had just lost his eyesight and the ability to speak. And it was going to be a long road to recovery.
 
06:53
Well, that must have been quite devastating for your family at the time. Mm-hmm. No, so tell me a little, I mean that was, you know, back in 2012, you were already a teenager at this point, so what was it like growing up from then with a sibling with a disability? It's a really interesting question that I don't think I've been asked before.
 
07:14
Everything changed after the accident. It started with a family meeting with my parents, myself, and my older brother, Jacob. They said they wanted to create the best quality of life possible for Nicholas, which meant they wouldn't be there for us as often anymore as they had to focus their energy and resources on him. Jacob and I understood because we also wanted the best for Nicholas, and so we grew up quickly because of that. We put Nicholas's needs first, which meant helping with his feeding, therapies, et cetera, before completing our homework.
 
07:44
for our own school trips because adaptive equipment is incredibly expensive. Adapting to wheelchair accessible life is difficult and you don't realize how truly blessed you are with mobility until you experience life without it. I felt that no one really understood the extent of the changes we made except for other families in similar situations. Right.
 
08:06
That makes sense. Now, studies also show that siblings who grow up with someone with a disability become more empathetic. Do you feel that about yourself?
 
08:16
I think it's definitely made me a more empathetic person. I would have never understood what wheelchair accessible life entailed until I was part of it. I think it also made Jacob and I more grateful, independent, and mature. It inspired me to volunteer for Special Olympics and work as a personal carrier for several years. Oh wow, good for you. So now getting back to why we're here, we're talking about your book, His Name is Nicholas. What inspired you to write that?
 
08:45
or I should say illustrated. I know your mom was the one who actually wrote the copy for the book. So what what brought this inspiration to where it is today?
 
08:57
Yeah, so I was doing a self-led project with Special Olympics based on spreading the word on inclusion. So naturally, I took inspiration from my family and the fact that it really bothered us when kids stared at Nicholas. Additionally, I took a literature for youth class in university and remembered learning about the CCBC diversity statistics on children's books. In 2019, they found that only 3.4% of books had a character with a disability.
 
09:27
the population of people with disabilities is much higher. There's a huge under-representation of that and as well as a lack of exposure and integration in schools, which is why I want to create a tool that could help teach kids about inclusion. So where, but when you look at society as a whole, how do you think we're doing in terms of inclusion, inclusion rather here in 2023?
 
09:52
Um, from my family, my family's perspective, not great because after Nicholas's accident, I saw him lose all his friends. People stared at him. People no longer talk to him in an age appropriate way.
 
10:09
They would use baby talk when he was a teenager and that really bothered me. I think there are certain organizations that do a great job at it, including their members with disabilities, but overall there just seems to be a lack of understanding in the general public. Yeah. In bigger cities tend to do a better job of making places accessible as well. And Canada seems a bit behind compared to the states because we've traveled there a lot for Nicholas's treatments.
 
10:38
So like, for example, we learned that every public pool in the States must have a lift, which is not a rule here. And we noticed way more accessible parking spaces, walking trails, ramps, stuff like that, that makes wheelchair accessible life a lot easier. Wow. Now, your mom helped with the writing. Tell us how that went.
 
11:01
Well, first, I just want to mention how she is a saint for agreeing to write it in her non-existent free time. She works full time as a teacher, then she goes home and does mixed therapies, cleaning, and evaluates the practicum students that help out. Overall, it was a great collaborative experience, though. I gave her the illustrations with a rough idea of the storyline and things I wanted to include. She wrote the book and we would video call to discuss it. My mom's colleague, who is an English teacher and has experience with special education,
 
11:31
the book and since I wanted this book to be a tool for teaching it was a great asset to have two very experienced teachers involved. Yeah that is really good. So where do you want this book to be seen? What is your intended audience?
 
11:49
My intended audience is elementary students because they're curious and probably have the least exposure to and understanding of disabilities. We found that they also stare at Nicholas because they're curious and often don't have anyone who can explain that he's not that different or how to interact with him.
 
12:13
I didn't have an official publisher for the book because I didn't want to sell it. My goal was just to distribute it to schools, teachers, anyone willing to use it. And honestly, making it on this podcast has allowed me to bring it further than I imagined. And I'm so grateful for that. Yeah. And we're happy to do this for you. And the fact that you're...
 
12:35
doing this all for free is absolutely amazing because you're an extremely talented person. So what has the reaction been so far? Have you managed to get it into some classrooms at the moment?
 
12:48
Yeah, the reactions have been really heartwarming. Honestly, I have gotten a ton of support from my teacher friends who want to use the book in their classrooms. The local libraries and schools have taken it in and the local newspaper wrote about it. From that article, people with intellectual disabilities have actually reached out to read the book as well as share it with others because they were just so excited to see a project like that. Um, it also made it into my mom's school. She was a guest speaker at a big celebration of learning event.
 
13:18
and I got to go in and help her answer questions. That's excellent. And so are there more books like this to add in your future? Or maybe a Nick... I mean Nicholas is older, he's older now. What's he up to today? Is there like a book about Nicholas and his later teen years as he approaches 20? Maybe for a bit of an older audience?
 
13:41
I'm not sure about books in particular, but if another opportunity arises where I can utilize my artistic skills to spread awareness on inclusion, I will absolutely take it. Nicholas right now is still in high school, and now that it's winter, he's doing a bunch of activities like cab skiing on Sunday, which is actually one of the illustrations in the book.
 
14:11
Stuff like that, just anything that we can, or anything that allows him to do the sports and activities that he once loved. That sounds really great. Now, just back to Nicholas for a moment, what sort of role did he have in the process of putting this book together?
 
14:33
We did want to get his approval, but he can only answer yes or no questions. So after it was written, we read out each page to him and asked him if it was correct. And each time he looked deep in thought and then said, yeah. There's also a page that mentions how he enjoys swimming and splashing his mom in the face. And so he laughed when we read that out to him. So I think we have his approval. That's good. Anything else to add?
 
15:02
to this podcast before we wrap it up? I just want to remind everyone that this is a free tool that anyone may use to teach about inclusions and intellectual disabilities. At the back, there is a discussion section for parents and teachers to use with their kids so that they can discuss the topic and think critically about it. Anyone is welcome to contact me for a digital copy and print or distribute it as they like.
 
15:27
You meant there's a mention in the back of the book about the Special Olympics BC. Now you talked about that a little bit earlier. Were they involved somehow in the production of the book as well?
 
15:37
Yeah, so Special Olympics BC runs a program called the Youth Engagement Project. So I was accepted as a volunteer to run my own self-led project with the goal of spreading the word on inclusion. So they gave us online training on how to run a project like budgeting and engaging stakeholders, stuff like that. And my work was a product of the Youth Engagement Project.
 
16:01
So can people find the PDF version through Special Olympics as well? Yes, definitely. So on Special Olympics BC's website, if you go to their youth engagement project page and go to the 2021 to 2022 projects, my name is in there and there is a link to the PDF version.
 
16:29
You've been listening to Developmental Disabilities Association's Encouraging Abilities podcast. Our guest today has been Veronica Kitzel, author and artist of a new book called His Name is Nicholas. The book is about including people with disabilities. It's available through the artist herself as well as online PDF versions for anybody interested in using it as a teacher's resource. It is free. To find out more, you can contact Veronica herself.
 
16:57
at veronikakitzel at gmail.com. That's Veronica with a K, last name, K-I-T-Z-U-L at gmail.com. Veronica, thank you for taking the time to chat with me today. Thank you so much for having me. We'll see you next time. I'm Evan Kelly.
 

Ableism Prompts a New Awareness Campaign

Ableism is an issue. From inadequate designs to being left out or looked down upon, ableism prevents many from being included in everyday life. The Office of the BC Human Rights Commissioner and Disability Alliance BC have joined forces to address the issue and created a new awareness campaign called Rewrite the Rules.
 
TRANSCRIPT
Ableism Prompts a New Awareness Campaign
 
00:06Time again for DDA's Encouraging Abilities podcast. I'm your host, DDA Communications Manager, Evan Kelly. So thanks again for listening in. Today we're talking about ableism. Now what is that? Simply put, it's discrimination in favour of able-bodied people or people without disabilities. Through that lens, our guests today are Kasari Govinder, BC's Human Rights Commissioner since 2019, and joining her
00:29is Selena Dewar, an advocate with Disability Alliance BC. Now a little bit about the commissioner. As an independent officer of the legislature, the commissioner is uniquely positioned to ensure human rights in BC are protected, respected, and advanced on a systemic level throughout our society. And Selena is a disability advocate who is a person who identifies with a disability. And although she is not currently practicing law, she does have her education in law.
00:59She is currently working as a law clinic assistant with the Disability Alliance. So this month is also Community Inclusion Month and Disability Employment Awareness Month. So there's a lot to talk about when it comes to inclusion and ableism. This month, this is why we've got Kasari and Selena here today. The Office of the Human Rights Commissioner launched a new campaign called Rewrite the Rules, a campaign designed to raise awareness, deepen understanding, foster dialogue, and spur action
01:29to people with disabilities. So thank you for after all that thank you for joining us today. My pleasure. Thanks for having us. So Kasari tell me a little bit about yourself. How did you get involved in being a champion for human rights here in BC? I have spent my career and in fact my life really working on these issues to some extent.
01:52I grew up in a family that was deeply committed to human rights issues and it was a common dinner table conversation with a real focus in our context on racism and sexism. My father grew up in apartheid South Africa and that side of my family is Indian, so experienced a great deal of racism and the impacts of systemic racism. So those were issues that inspired me from an early age and I have a lot of background and have spent my legal career.
02:21working on equality issues in a number of different contexts, again, including gender, disability work, race and indigeneity issues, and so on. And so now tell me about the Rewrite the Rules campaign.
02:38This is a public awareness campaign that we launched this year to unpack the concept of ableism and more specifically try to start to undo some of the systemic discrimination that people with disabilities face in our society. Now we talked about, you've also mentioned in some of this campaign about unwritten rules. What are some of those unwritten rules?
03:04Yeah, we called our campaign Rewrite the Rules and the idea is that ableism is really often a set of unwritten rules that we don't even consciously see or speak about, but that we still follow to a large extent and that that's the kind of society that disables people. The idea here is really that disability to try to...
03:32So we begin, especially as people without disabilities, to understand that disabilities are not inherent in the person. They're the way in which society creates obstacles to the participation of folks who are not typically abled. And so it creates an exclusion that is really about how we build the world around us rather than what's happening for an individual in that space.
03:59Yeah, and so how much of the responsibility is with individuals in sort of addressing the unwritten rules, and how much responsibility with government or institutions, even people like organizations like us, or businesses? Who owns most of the responsibility here?
04:15I think it's across the board. I think everybody has some role to play here. And I think it ranges again from actions that concern individuals, and those are important. So, you know, if you're an employer or you're a service provider or you're a housing provider, you have obligations under the Human Rights Code to accommodate people with disabilities and people with diverse ranges of abilities to the point of undue hardship. So you need to do everything that's reasonable to do.
04:45So you need to build that ramp or to create a flexible work schedule or to accommodate doctor's appointments or whatever you need to do for that individual to create a safe and inclusive workspace or housing space or so on. So that's an important part of the human rights landscape. But our obligations don't end there because if we're just dealing with discrimination on an individual basis, we'll never actually transform our society to take away, to...
05:14these disabilities in the sense these obstacles to participating in our broader social fabric and our economic world and so on. So what if we created flexible work schedules across the board where possible? That's not possible in every workplace, I appreciate that. But in many workplaces, we do, we have very rigid schedules because that's just always the way we've done it as opposed to thinking about things differently in order to ensure that a wider range.
05:43of folks are included in that space. So that's the kind of systems change that this campaign around rewrite the rules is trying to get at. Now, Selena, tell me a little bit about yourself. You're a tax advocate for Disability Alliance BC. I previously worked as a tax advocate where I helped people to file taxes so that they got the benefits that they are entitled to. So Disability Alliance BC for your reader, your listeners who may not know.
06:09is a cross facility organization that's over 40 years old. And it supports people throughout the entire province to live with dignity and independence, to participate equally in fully in society. We do that through our systemic advocacy, but also through our advocacy programs like the tax program that you mentioned, and our law clinic and our advocacy access program that helps people apply for benefits. And so I've been working with the ABC for six years, more than that.
06:39helping people with their taxes and to apply for the disability tax credit. But now I help with our law clinic, talking to clients and helping them connect with our lawyers. Well, that sounds good. So what is your role with the Rewrite the Rules campaign? On behalf of our organization, I actually participated in the campaign and kind of gave feedback to some of the sort of draft concepts.
07:08that the commissioner's office had put forward. And basically, our executive director was looking for someone from our office who had both lived experience and direct client contact that would give sort of a disability lens to reviewing these things. And so that's how I got involved. And it was a pleasure being involved for a number of different reasons.
07:36Now, one of the things that Kasari mentioned is one of the, in the last question that I asked her, she's mentioned, you know, we have to build that ramp. And I recently had an experience with a friend of mine who is in a wheelchair. We were at a club downtown and, you know, he was coming in to do some photography work that I hired him for. And he comes in the front door and that's great. And then we both, you know, we both grabbed a beer and we looked out the back and low and beat it.
08:06the only way out the back is stairs. So he can get in the front but he can't get out the back. From your point of view, how is BC doing in terms of confronting ableism and dealing with it? We have a long way to go actually and that's why I was so excited to hear that the human, the Commissioner's office was taking on this issue of ableism and the unwritten rules, both as an advocate and as a person with disabilities because
08:36The type of situation you just described with your colleague is something that I have seen myself, particularly when I go to socialize with friends who are in wheelchairs or even for myself. A lot of times when you go into spaces, I mean, I can't even get up to sit at a lot of the tables because they're all bar height. And I think just in the sense of physical spaces, there are still problems. Even the ramps that exist are not great or they're in scary places.
09:05dirty alleys or whatever. But I think as the commissioner comments allude to, this ableism is a lot broader than just the physical spaces as well. Ableism is in the way that we think and the way that we relate to people who have cognitive disabilities as well or mental health disabilities. So I wanna put that out there. And I wonder if I can comment on some of the ways that people...
09:34can resolve ableism. You were asking about whose responsibility it is, and I'm wondering if I can share my thoughts. Yeah, absolutely, go ahead. So I think as the commissioner mentioned, everyone does have important roles. But I think as with anyone who has been marginalized, I think the people who are not directly harmed by ableism do have a duty to educate themselves and not put that whole burden on the shoulders of folks with disabilities.
10:03I think when we think about solutions to physical ableism and other systemic ableism, we need to make sure that we're relying on the experience of people with a variety of disabilities, physical, cognitive, visible, invisible, and also with intersecting identities, because so often in the human rights context, it feels like people are in silos. But I think we know, and the commissioner's office will know, that many people experience various barriers, disability and perhaps gender-related barriers.
10:33cultural and racial related barriers as well. Organizations like ours have a, and even the commissioner's office, I think we have a role in bringing issues and solutions to the attention of decision makers and in educating the public. And governments have a responsibility to ensure that disabled people have accessible, meaningful ways to address discrimination when it arises.
10:58Selena, I just wanted to echo much of what you said, but just to emphasize the two points which I think are so important. And I'm grateful that you raised that intersectionality point because I think it's absolutely key. And we didn't get deeply into it in our campaign in the interest of creating sort of a more simple way to engage on the issues or straightforward way to engage on the issues, but it couldn't be more important to.
11:27undoing all forms of discrimination is to understand that these issues are multifaceted and that people experience these issues in different ways. So gender has a key role here, race and indigeneity, people with disabilities who, you know, women with disabilities face much higher rates of gender-based violence, for example. Indigenous women face higher rates, so Indigenous women with disabilities may face even higher rates.
11:55So understanding those nuances are vital. So I appreciate that point. And I appreciate the flag as well about the level of responsibility to people who don't have disabilities to engage with these issues and the responsibility to educate ourselves. And I do wanna put as well an emphasis on what government's obligation is in this context. I do think our campaign here really highlights everyone's responsibilities, particularly those who...
12:23who have power over spaces and systems, as employers, as housing providers and so on. But it is a key responsibility of government to take this form of discrimination just as seriously as the other forms of discrimination. This is in fact the area in which there are the most complaints around discrimination that go to the human rights tribunal. So it has particular poignancy or weight in the context of the human rights analysis.
12:53Yeah, and it's interesting, I've been doing a bunch of podcasts lately around accessibility and ableism. And the interesting thing is, and you highlight some really, really key points at how complex this issue can actually be, and how many intersections there are. But even when it comes to simple accessibility, this is something that is largely going to affect almost everybody. These aren't necessarily going to be...
13:20left to singular groups or anything, because as we all age we all have problems getting around. We've got to look at how we do things and how we design things and how we build things from a universal lens rather than just, oh we need some stairs here, throw in some stairs, let's do, we got to sort of open that mindset of humanity, from my point of view at least anyway.
13:47Absolutely. And I think that's part of what we're trying to do with this campaign is shift the way that folks see the world around us. So again, particularly aimed at people who don't aren't experiencing disabilities or don't identify as somebody with a disability. It's not just taking steps ABC. It's actually learning to see the world a different way.
14:09and to see the obstacles that we build in that we don't have to build in to our society and to our built environment. As an advocate and as a person with disabilities, I'd like to point out to you that people, it is very important to think of universal design in terms of the physical space, but I think that concept can be applied a lot more broadly to make events more accessible to, for example, people with sensory disabilities or...
14:36information processing related disabilities. I think part of my interest in this campaign is also to, and my input into the campaign was also to remind people that disability is extremely broad. So we have people with intersections identities, but we also, disability itself is extremely broad. And often it's focused on the visible disability, but there are a lot of folks who are experiencing ableism whose disabilities are not as obvious.
15:07Yeah, absolutely. And it's it's it's one of those things where, you know, we operate.
15:14Jobs West, it's one of our social enterprise. It's an employment service for people with developmental disabilities. So what we do is we work with clients and we work with the employer so that the employer you know understands what the clients needs are and it just generates successful employment opportunities. And one of the big things, and you talk about you know creating an accessible environment, it's not just sort of physical, is that you know businesses tend to think that it costs a lot of money.
15:44to do that, to adapt or to change things so that it becomes more universal. And the truth is it really doesn't. It doesn't cost anymore. And what we find with people who are neurodiverse and employed...
16:01It's actually a benefit to the business' bottom line. There's better retention, there's longer employment. I mean, the list goes on. So I absolutely agree with that. Now we've been talking about government responsibility, and it seems like a lot of levels of government right now these days are creating new accessibility rules and laws. And BC has some new legislation. The city of Vancouver launched this year its first part of an accessibility plan. On the surface, this seems really good. I mean, I know governments want to do things
16:31to look good and get re-elected, but are these steps in the right direction? Is it enough? I ask that to either of you.
16:40Sorry, do you? No, go ahead. I will say as a person, both an advocate and a person with a disability, I mean, obviously, it's good to have accessibility legislation in place and I think there is some promising potential. However, I believe some of the...
17:08the tools that are within that legislation may not even sort of be in place for up to 10 years from now. And the legislation doesn't apply to sort of every type of service or every situation a person with disabilities may encounter. And as it happens, I think we're still waiting for some rules around how the government expects the bodies that the legislation applies to.
17:32to make things less ableist or less discriminatory. And so it seems like a really long process. And frankly, I'm not sure how much teeth there is in it, if that makes sense. And these are issues that our office is very interested in and because we provided feedback to government before, and my understanding is it was not applied. And there were other organizations as well. So is it a good thing?
18:02Sure. Does it go far enough? Not for sure. Maybe towards a no, but I'm happy to hear from Kasari as well. Yeah, I mean, I think your summary there at the end of, is it a good thing? Yes. Does it go far enough? You know, probably not. I think the long timeline is important and some of the limitations of how the scope of the legislation that it doesn't
18:31that the scope isn't broad enough yet and in hopes that we will get there. But I think the bread of systemic discrimination facing people with disabilities is not fully addressed here. And the sort of unwritten rule side of things and the way in which our societies are designed to be ableist and could be more designed with universal design, I think they're left off.
18:59This is a bit more of the kind of maybe perhaps higher than just the lowest hanging fruit, but still in that realm of what's more doable for government to start out with. And I think there's there's definitely more to do on that front. Yeah, no, obviously, you're one of the when it comes to ableism.
19:18poverty is a huge problem with the disability community, obviously because some of that means finding employment and keeping employment can be difficult and that it becomes ableist for organizations or businesses not to hire people with disabilities. Now the federal...
19:38that new Canadian disability benefits. It went through a second reading the other day, and it's going through a vote today, as I'm understanding. But there's still lots more work to do in terms of getting that new benefit going. Is that a better step in the right direction? I mean, getting more benefits is obviously good for those who need it, but that doesn't really, to me, in my mind, sort of address
20:08of that puts ableism in place to begin with. You're right. I think you're right about that. Also, I mean, any time there's a financial benefit, we have to ask ourselves, is everyone who might benefit from it actually getting it? Because I can't comment specifically on the disability benefit you just mentioned, but there are.
20:35instances where folks who receive persons with disabilities assistance, for example, end up having to give up some income that they would otherwise be entitled to, such as those who have worked and gained EI. Right now, they have to give up their, like there's a call back. And so that's something that we are advocating against because it just reinforces the poverty of many folks with disabilities. And we have consulted with Kusari's office on that point.
21:03which is great. So, sorry, did you have anything to add on this? Yeah, I mean, I was going to say that that we fully support the push to claw back the claw backs, if I can say it that way. Claw backs are a problematic piece of the picture where benefits are concerned. And, you know, so just talking about the benefits presents an incomplete picture of what the actual overall financial benefit is.
21:33talking about income assistance of various kinds and benefits of various kinds is an important part of the conversation around poverty. I agree it doesn't change the system as a whole and it also doesn't address discrimination that flows on the basis of poverty. So another piece of the puzzle, definitely not a complete answer, but also a piece of the puzzle is to, is to, to prohibit discrimination on the basis of poverty.
21:59because we know that people with disabilities, as we've just said, disproportionately live in poverty, as do many other marginalized groups, as do Indigenous people disproportionately live in poverty and so on. So part of our picture around systemic equality generally, and as it applies to people with disabilities, is to prevent discrimination on the basis of poverty or social condition like homelessness or appearance of homelessness. And yet that is not.
22:23enshrined in law in BC. It is in some other jurisdictions, but our human rights code is silent on the issue of poverty. In fact, most of our domestic rights protections are silent. Anything that applies in BC is silent on the issue of poverty. So I think, you know, we've designed these tools to protect and promote human rights for those most marginalized among us, and yet...
22:47we leave out this huge and important group of folks living in poverty and experiencing poverty for all the reasons that we've just talked about. And it's entirely legal to kick someone out of your store because they appear homeless or living in poverty. It's entirely legal to follow someone around a store for that reason, whereas it's not on the basis of race or disability. Directly,
23:11But those things often become very difficult to prove. So we've been advocating for quite some time along, many in the community, to include that prohibition in the Human Rights Code. Now, Selena, I want to ask you a little bit more of a personal question. I mean, you'd feel free if you don't want to answer that at all. But what sort of ableism have you experienced in your past? Oh, sure. So for context's sake, I don't mind explaining that I have.
23:38cerebral palsy and it affects mostly, at least externally, it affects my walking. So I use crutches and the ableism that I experience, unfortunately, at least on a monthly basis, is not more frequently. It can be experiences like I mentioned where I will go somewhere and decide not to go there because I can't even sit at the tables because you have to climb up onto a...
24:04stool or in transit, although you're supposed to, you know, they're supposed to get close to the curb, they're supposed to lower the ramp. I often, you know, end up having to navigate huge gaps and drivers that are less than thrilled if I try to remind them that they're supposed to do that or, you know, I've had a driver yell at me when I asked to use the ramp because he said that it was only for people in wheelchairs.
24:32And those are just a few examples. But there are also sort of everyday situations of what I would call microaggressions, where people, even if they don't mean to, they're causing grief. For example, I sometimes wish I could walk around with my resume taped to my head, because I've had people say to me, I'm so glad you got out today. It's almost like they wanna give me a sticker for tying my shoes. And so...
25:02uh it's extremely frustrating and kind of demoralizing and sometimes it's i mean it it doesn't make you it makes me feel small and so even with my experience and my abilities um these kinds of things happen quite frequently um i've certainly experienced ableism oh um albeit um not
25:27super overt, but ableism in the workplace scenario, not in my current position, but in others. So hopefully that answers your question. What that does say though, and what I hope to convey here is that ableism is so entrenched in our society that there are a lot of assumptions just on seeing someone with a pair of crutches, for example.
25:51And frankly, my experience both personally and in encountering many people with disabilities is that we are incredibly resilient and incredibly adept. And frankly, with all of the ableism in society and the times that we are refused the ability to work or those sorts of things, we are losing a lot of productivity and creativity. Even if you want to look at sort of a bottom line scenario, we're losing so much just by excluding people with disabilities and other marginalized folks.
26:20Yeah, absolutely. I mean, especially when it comes to the the neuro diverse community, experts will tell us that, you know, that's a huge untapped pool of employees and ready to go. And and to your comments about people saying, oh, I'm so glad you got out of the house. Do you do you subtly remind them that you're educated in law and you did everything? I don't have time to do that. They usually do this to me in the crosswalk. I said people follow me in the crosswalk while I'm trying to get out.
26:50of traffic. So I'd like to, but I don't have time. Yeah, that must be very, very frustrating. It is. Thank you. So we've been talking a lot about poverty and how ableism, I think, contributes to that. I'm not sure if you'd like to discuss the topic I've made. That's something that's come up a lot. Concerns that some people feel like they don't have any other way out, except for...
27:20ending their lives. To me this is concerning to say the least. Do you have something to think about that? It's heartbreaking and you know I'm sure my office will have its own comments so to speak but just working as an assistant for the law clinic I have actually heard from people who either feel like they don't have any other options or
27:50in at least one case where they, you know, they don't have a lot of resources and they have complex health needs. And their doctor suggested it as an option without them having brought it up. And that person told me that.
28:06that they felt horrible and that the trust was broken between them and their practitioner as a result. But hearing those things, those are, I can specifically think of like two or three people I've heard from, but I have a feeling it happens a lot more than that. And both from an advocacy perspective and as a person with a disability, it's horrifying and heartbreaking. I can't imagine even bringing that up to somebody as an option.
28:32To me that's absolutely bizarre. Any comments from you, Kasari, on that? I won't comment on that because the jurisdiction of my office is provincial, so I'm not commenting on matters within the federal decision making realm. Okay, that's fair enough. Sorry. So how can, for both of you, how can organizations like DDA better address the needs of the disability community? Well, I think...
29:01our office has found that collaborating with other organizations can be helpful because it can give you ideas of how you might resolve issues or how you might connect better with clients to figure out how to fix a problem. These are things that you, by the way, I assume that your office is already doing, but maybe just needs to do more of, I don't know. But using your relative power alone or in collaboration with others.
29:28to ensure that the needs and goals of people with disabilities are heard and applied by decision makers. And then I would say educating families and caregivers and the general public about ableism and how they can make changes to address it. And most importantly, something that I think already happens, but get client feedback, not just from people in their lives, but also from people directly, because it's the only way you'll actually address any of these issues properly, I think.
29:58And I think from my perspective, the question is really how we can support you to do, support community organizations working in the disability space to achieve their goals. So where we can provide some amplification for the policy or changes that may be afoot and may be asked for, that's a role that we can play as Luna discussed earlier in terms of benefits callbacks.
30:28of amplify as I say or provide some kind of bridge. We occupy a somewhat unique space. We're not in the civil society non-profit realm. We're not within government. We're independent from government. So we can provide some more of that role and certainly what can help us in our work on ableism and has helped us immensely in this campaign.
30:51is to be able to have those collaborations, to be able to build these relationships that we did with Disability Alliance and other organizations to provide us with just invaluable advice and guidance and direction as we developed this campaign so that we ensure that the work that we're doing on Ibalism is actually reflecting.
31:13lived experience of folks in this community and service providers who see these issues every day and can reflect those experiences back to us. Now is that something the your office does often in terms of like collaboration with other organizations? We're working through we've my office has existed for just over three years and we've done uh worked through collaborations through all of our project work but in different ways and so we're still in that process of figuring out
31:41Which of these models seems to be the most successful? Where are we being the most respectful of people's time and energy that are contributing to us, but also making that support as meaningful as possible so that we're able to reflect back what we hear. So yes, the short answer is we're doing these kinds of collaborations and community embedded work in every aspect of our work, but also learning as we go for sure and trying to incorporate those learnings into the next project we do.
32:09Sounds good. Now, Selena, do you have anything else to add before we wrap things up in terms of your own experience and how we're addressing ableism here in BC? I think I would just say that I think it was a fantastic opportunity to be to be a part of this campaign, and I would like to see the Commissioner's office, you know.
32:35similar campaigns perhaps around issues that relate in some way or are linked to ableism as well. I think anything that we can do on a larger scale to raise awareness of these things is important. I think that the collaboration we have been able to do with the commissioner's office and with other organizations around the province was very helpful.
33:01I haven't, there was a question I think about how did you find the experience collaborating together and you know it was very enlightening and encouraging and we would like to see more. That sounds good. Kasari, anything else to add as a final thought? No, just just so thank you for for inviting us on today and the opportunity to speak about this campaign. Really grateful for that.
33:26Yeah, I'll mention that again. I think that about covers it then. I'd like to thank Kasari Govindar, BC's Human Rights Commissioner, and Salina Dewar, an advocate with the Disability Alliance BC. Today we've been talking about ableism in BC and their new campaign called Rewriting the Rules. You can find out more at bchumanrights.ca. Thank you both for joining us today. Thank you so much. And I'm your host, Evan Kelly. Thanks for listening.
 

A Chat with Dr. Jaimie Borisoff: On the Forefront of Wheelchair Design

Accessibility affects many people, and even one day, perhaps yourself. In this Encouraging Abilities Podcast, we connected with Dr. Jaimie Borisoff who runs a development program at BCIT with an eye on designing better wheelchairs and other adaptive equipment that helps people stay included.
 
TRANSCRIPT
 
A Chat with Dr. Jaimie Borisoff: On the Forefront of Wheelchair Design
 
00:04Welcome to another episode of our Encouraging Abilities podcast. I am your host, Evan Kelly, Communications Manager here at DDA. Now, over the past few episodes, we've been talking about accessibility, and not just for people with developmental disabilities, but for anyone really who needs adaptive technology or even big changes to the world around them. Now, the thing is that it's likely at some point going to include each and every one of us as we get older. So it's not just people who have been injured or people with developmental disabilities.
00:34can affect us all. Now we've talked with accessibility authors, lawyers and design consultants and today we're talking with Dr. Jamie Borosoff. He directs research out at BCIT and UBC here in the Lower Mainland. Now he has one of those resumes and levels of education that are really off the charts. You got to listen to some of this. He's the former Canadian research chair, rehabilitation engineering design at BCIT, adjunct professor, Department of Occupational Science and
01:04Director of Make Plus Applied Research Group. That's again a BCIT. He's got a PhD in neuroscience and a Bachelor of Science in engineering physics. I mean, it's just quite a list. So Dr. Borisov focuses his research on people with spinal cord injuries and other mobility issues. One focus of his work is on expanding people's ability to interact more fully with others, the environment and the world. In the long term, Dr. Borisov wants to merge current models
01:34wheelchairs, for example, with newer technologies like robotics in order to increase the ways in which technology can improve the lives of people with spinal cord injuries. So thank you for joining us today, Doctor. Yeah, it's a pleasure, Evan. It's great to be here. So what got you interested in this kind of work and research?
01:54I'll make no bones about it. This is a lot of this coming from my own personal experiences. I am a wheelchair user myself. I have a spinal cord injury from a car accident over 30 years ago. And really ever since that event, and kind of, I guess, due to the nature of
02:16the way I think about things and, you know, being kind of an engineer at heart, I always started thinking about problem solving, various aspects of my life that were more difficult than it was before the injury. Now, were you an engineer first before your accident? No, I was in first year university actually, or just after that. So I was mulling over at that time, what exactly to do, what exactly to major in. And I had a few thoughts about that. And...
02:45I did migrate towards engineering in the end, and that was the right decision. But I'd always been, you know, someone that tinkered and took things apart. I always took my bike apart or radios apart and that sort of thing as a kid. So it was kind of a natural place for me to go. So that was 30 years ago when you started your education. And, you know, obviously things have, you know, changed in that time. How much better, in terms of schools, in terms of students accessing schools, how much better has it gotten?
03:15Great question. It's gotten a lot better in some ways. And in some ways actually we're a bit further behind. Let me explain what I mean by that. If we go back over 30 years ago.
03:30This was shortly after Rick Hansen's Man in Motion tour and all the visibility and awareness he brought to spinal cord injury and wheelchair access and general accessibility and disability. Vancouver is also a relatively new city compared to older cities, say in Quebec or in Europe.
03:47And so we were ahead of the game. That being said, I was a student at UBC. It's a big campus. It has a lot of old buildings. There was a lot of access challenges, a lot of service entrances, a lot of back doors, a lot of working with the registrar's office to move classes into accessible buildings, but they were accommodating and they got it done. Then around that time as well in the U.S.
04:12As you're probably aware of, and your listeners are probably aware of, the American with Disabilities Act, the ADA was passed. And when I think about some of my travels around that time, you know, again, Vancouver was ahead of the game. But then over the next few decades, the US, almost everywhere in the US became accessible. If I think about going to a hotel in the United States,
04:39every hot tub, every pool has a lift into it, for instance. Almost every building is accessible. And it got that way because of the ADA and the litigious nature of it and the teeth it had in it. And in terms of there's a lot of innocent bystanders along the way, but in the end, it created a pretty accessible society.
05:02And so I think in that regard, we've been passed by actually in a lot of ways. And, you know, we can have a new, a new trust fund here in Vancouver, for instance, which again, should be way ahead of the game given everything we do and where we're coming from, and, you know, have a table that's accessible. I might have only high tables in it, for instance, which just strikes me as being bizarre how they can get like a license or a business license to do that. So.
05:26We still have a ways to go. Yeah, I mean, when you talk about that, I was out recently with a friend of mine who does use a wheelchair. And we were at a local club, and he got in to do some photography in the front entrance, no problem. And we looked around out the back, and it's nothing but stairs. So it seems like there's places that need to be fixed or need to be addressed. Do you still see too much of that, in particular in Vancouver?
05:56Yeah, a little bit too much of it. And you know, I'm being picky, I think, a little bit. Again, I think back 30 years ago, and I was going to go to a restaurant, I didn't know, I would phone ahead quite often and say, hey, are there going to be access issues? Are there stairs? Is there a bathroom? That sort of thing. So I never do that anymore. Occasionally it backfires. But it's pretty rare now. So certainly we've made some impressive strides. But now I think we're getting to the point
06:26We want to get that last 10% basically and there's a lot of work to be done still to achieve that. Absolutely, no. Do you find the perspective of people with disabilities missing in the engineering field?
06:39Yeah, if I think of the wheelchair companies I've interacted with over the years, and I know many of them now, I've interacted with many at trade shows and conferences, I've visited several of them, there's not many wheelchairs with disabilities in those offices. I was at a local wheelchair company about 15 years ago,
07:05that wasn't accessible. Actually their office wasn't accessible so that that's kind of an interesting example. Can you tell me a little bit about the the the make plus let me just go back up to the make plus applied research group that you're out there UBC or sorry BCIT? Sure make plus is a group of researchers of 15 of us.
07:32I direct that now. It's something that I recently took over. I'm proud to say that I recently had the opportunity to pick on. We have a mandate from BCIT and the province of BC to interact with local industries, local companies and also other academic groups, say at UBC or SFU, and we have collaborations actually across Canada for that matter. And we collaborate on applied research projects.
07:57So we think about a company, a smaller company that perhaps doesn't have an R&D group. Maybe they don't have a group of engineers or perhaps specialized equipment or the resources to pull off some sort of R&D project. That's where we come in, we'll partner with them. We have an industrial designer so we can design and prototype pretty much anything.
08:20Now how many of those type of projects get to the market? I'm just looking on the website right now, you've got this little doggie in his dog wheelchair. And some of that obviously has reached. So is the idea of this to put things into market? Absolutely, that's the goal. And given our focus with partnering with industry,
08:48And we're talking about for-profit companies that have employees, they have revenue targets, they have profit aspirations, right? They are only doing their R&D projects to do for their business interests. And of course, many of them are doing things to make a difference in people's lives too. We do many medical device projects, for instance, in that regard. So, you know, we've had a lot of great success with, you know,
09:18projects that have led directly to products that are in the market now. You were involved in developing the Elevation Wheelchair. Can you tell me about that?
09:29Yeah, that's right. That's something I started doing actually in grad school before I came to BCIT, but it certainly overlapped with some of my BCIT work as well. And that was a project whereby I was dissatisfied with my current technology that I had available to me that I could purchase in the marketplace. I'm a manual wheelchair user. I didn't like necessarily what I was being offered.
09:58to kind of satisfy what I wanted out of a manual wheelchair. Is it an electric wheel, like a wheelchair? Is it something that raises by itself or is it something that where, I mean, if your legs are the problem that you can like pump it up with your arms kind of thing? Yeah, more of the latter. So it's completely a manual wheelchair. And so let me tell you a little bit about the, sure, a bit of the motivation behind it.
10:24As you listeners probably know, if you can think of a manual wheelchair, a person in the community in their manual wheelchair, it has a fixed seat. It's around a typical height of a chair in the community. You can get under tables. They're now the modern ones are very lightweight. They're easy to push, they're maneuverable. They work really well in those regards. But there's a couple of things that they don't do well.
10:52And one of them is if you think about a sport wheelchair, for instance, this is a wheelchair that you might use for racing or in my case, I played wheelchair basketball. So I played for Team Canada. That's a whole other story, but I can tell you about that later. But in playing basketball at a high level, I would sit differently than I would every day. I was sitting much lower. I was in a better position to have good balance and to be able to exert force on my wheels, to go faster and these sort of things.
11:22to push that chair than my daily chair. At the same time, when I was in grad school, I had to work at countertops in the lab. And so I had to get up higher. And I was fortunate enough to be able to use a standing wheelchair. This is a wheelchair that stands you completely upright. But those are big, they're bulky, they're cumbersome, they're not lightweight, you can't throw them in your car easy. And I also found that I wasn't standing usually at all. And I was using
11:52I found very useful. And so my design goal and thought process was, what can I get the best of both worlds? Can I get up to countertop heights? Can I get up to partial standing?
12:00And then can I get down into a low, aggressive wheeling position to wheel around the community a little easier. And that design thought process led to the elevation wheelchair, which is a ultra light wheelchair, it's lightweight, it pushes really well, but it lets you get into these two more extreme sitting positions. Now is that on the market today? It is, yeah, it's on the market. It's made by a group called PDG Mobility.
12:30manufactured and distributed around the world. Do you own the patent to that? That's correct, yes. I have several patents for it that PDG now controls and I consult for them still and so that there's a bit of disclosure there as well that I do get paid for some of the sales of those chairs. Well I would hope so. Now that brings me to the next question, is that an expensive
13:00It is an expensive chair. And unfortunately, anytime where you're doing something different, that's a bit out of the norm. That's kind of a bit different from a typical line item, so to speak, in a funding matrix, it is more expensive. And that's, you know, one of the challenges.
13:20marketing something like this to the broader population in different jurisdictions in North America and around the world for that matter. And that's, you know, that seems to be one of the sticking points for the disability community is that people generally don't understand that there's all this added cost when you've got these disabilities. Absolutely, yeah, and I've, you know, being in
13:48at academic institutions and speaking to engineers and students and many people, there's this kind of notion that a manual wheelchair is kind of like a bicycle and they're kind of both made out of tubular metal welded together, aluminum or steel or something like that and why are they, wheelchairs so expensive compared to you know a bike you can buy at Walmart or something like that and and that we probably don't have time to get into it but there's a lot of reasons
14:18for that and it is a medical product. There's prescribers, there's funders, there's all sorts of, it's customized quite often, it's fitted to the person. There's all sorts of good reasons why it is more expensive and it's relatively low volume compared to a consumer product like a bike. You're exactly right, it is difficult for people that don't have good funding sources and good insurance plans and we think of Canada as being a fairly flat
14:48people having access to the same things and well that's unfortunately not true. No it's not. In this regard it's really how you ended up with your disability and how that came to be and there are haves and have nots unfortunately in our industry. Yeah and it's you know that's obviously a huge concern so how do we make these kind of devices more affordable for everyone who needs it? Well we
15:15We hopefully keep innovating and keep expanding and things hopefully get cheaper over time. And unfortunately, that hasn't happened with our chair. It hasn't, you know, never had got the volumes up where that happens. There's a lot of reasons for that, I think. But I think on the whole, these types of wheelchairs have gotten cheaper or I should say the quality has gone up.
15:42And the price has stayed the same over the years, if I think back, you know, what I could get now compared to what I could have over 30 years ago. So that's certainly happened, quality's gone up. But yeah, the prices can get really difficult then. And now what we're seeing in the market, we're seeing carbon fiber and titanium and some more exotic materials being used, again, like the bike industry. And if you think about, you know, say a mountain bike, you can spend, you know, $900 on a mountain bike or you can spend $9,000 on a mountain bike.
16:12Absolutely. Or more if you want. And so our industry is not dissimilar in that regard. You know, we've been talking about sort of that prevailing attitude in society. I mean, I think that people, sometimes people...
16:27don't understand even the emotional connection for someone who uses a wheelchair. You may have seen in the news a lot lately about this young lady whose wheelchair was damaged and even lately lost by airlines. Do you see general attitudes and policies improving for people with limited mobility or is it still an uphill battle? Well that's an interesting question. I've been...
16:54in that situation myself, I've had a chair damaged, I've had a chair lost temporarily only. I don't think I've ever had it more than a few hours or a day without it, but I do sympathize with that. It's a tricky problem and I understand why these things make the news when they happen. But I guess at the same time we
17:23I do understand that this is something that is not as common as probably as we think it is in terms of, you know, people taking these high-end wheelchairs on planes. I'm sure it happens every day, but I'm sure not every airport and every airline deals with it every day. And it's unfortunate. And it...
17:43it has, you know, what does it come down to? It probably comes down to training and awareness and understanding that again these things aren't a set of golf clubs that maybe a businessman is taking on a business trip, right? It's literally an extension of the person and exactly how do we how do we get that across, right? That these require more care and more attention and it's a tricky thing to navigate. Now are there any other newer designs or projects that
18:13There are always interesting things we're working on. That's a short answer. I can speak about a couple in my own lab. You mentioned that I'm the former Canada Research Chair in Rehabilitation Engineering Design. I was doing that, or I became director at MC+, but I was doing it in parallel with that group and with many researchers in that group. And that work is still continuing. We're still going after federal funding to continue much of that work.
18:40And we have two broad categories of research going on under that stream. And one of them is around wheelchairs and wheelchair mobility. We're getting really interested in electric assist. If you think about what we see locally now and certainly around the world about e-bikes, how that's exploding.
19:01with bike paths and that sort of thing. We're seeing a lot of really cool products now coming into the manual wheelchair market. I'm not even talking about power wheelchairs, it's a whole other area that we could delve into, but in terms of manual wheelchairs, we're seeing about products that can be attached to manual wheelchairs or wheels that can be electric now, just like an e-bike.
19:23and really seeing now this hybrid approach to to manning wheelchairs and we're doing a lot of work in that regard especially having a goal to get people into more inaccessible areas and by that I mean say off-road say trails think about our our parks and forests and beaches for instance and and and then whenever I talk about this with with other people they say what about the rest of
19:52And we can all imagine how difficult snow is with wheelchairs. And I know it is, I'm being facetious, but we don't think about it quite as much here in the Lower Mainland, but in the rest of Canada and certainly the rest of BC for that matter, snow and wheelchairs do not mix well together. And so we have a lot of interest in how a power assist and different components attached into manual wheelchairs can help with that.
20:15Well, that sounds really good. It's kind of a double-barreled question. Have you seen much change in the push for accessibility in your field in terms of education? And is there a growing student body in this area of research? Are you getting a lot of students wanting to get involved with accessible engineering or accessibility engineering? Yes, is the short answer we have. There's always been, I think, great interest
20:45in this area, it's creative, people can really put their engineering hat on and think about their studies and really apply it. There's this very real notion of you're helping people directly if you can make a difference in that regard. Unfortunately, the other tale here, though, is that we are a relatively small industry, and so if we train
21:13young students, engineers to be specifically specialized in say assistive technology or wheelchair design, they're going to have trouble finding jobs. There's only a handful of engineering jobs in wheelchair companies in Canada for instance. It's, I don't know what the number is, but it's probably under 50 Canada-wide, which is a relatively small number. Locally here, it's,
21:43probably less than 10. And so how do you train a bunch of engineers to want to become better wheelchair designers and not have jobs for them to go to? That's I guess at the end of the day, it's still a niche market no matter what. In the end, exactly. It's still a relatively small market again, compared to broader consumer products, right? And so what we try to do is engage people in our work, our research, our projects, but hopefully they're getting a well-rounded kind of experience that they can apply to anything.
22:11And so we do a lot of work around engaging the end user, for instance, when you have a student doing a project, they may have an idea about, hey, this would be a great feature on a manual wheelchair, for instance. But before we let them just go ahead and do that, we say, well, maybe you should ask a bunch of people in manual wheelchairs to see what they think first is.
22:32So we kind of want to get away from the solution looking for a problem and focus on the problems people have and getting the engineers, the students to engage with them and understand the problem before they go out and try to make better solutions. That can be then applied to anything, any problem. Well, for sure. Now, we've been talking a lot about wheelchairs and obviously limited mobility with legs. Are you working on any projects that help the upper part of the body?
23:02mobility? We don't do a lot directly in our lab but one area we do a lot, we are doing a lot of work and that touches on that and that's general exercise. We're doing quite a bit with adaptive exercise equipment.
23:17If you go to a local gym and you're a wheelchair user, you'll find generally a lack of options about different machines you could use, different cardiovascular machines, like the lipic machines or exercise by treadmills and all the different options that people have.
23:36So we did one recent project which is quite interesting. And this is a really fun with researchers from SFU, UBC and BCIT, where we made rowing machines, a couple of different types. There's a stand up rowing machine called a ski ergometer. And that's just your conventional rowing machine where you sit down on a small seat and use your legs and to row back and forth. Because these are common machines that we see all over the place, but they're not very friendly for realtor users.
24:06And so we need a project with this group of collaborators to make it more wheelchair accessible so that you could just wheel up to a machine, not have to get off your chair to get into a, say, a small seat, but you could just wheel up to it, make a few adjustments to this support bracket that we have. It's almost like an amusement park where you hop into your amusement park seat, then you bring down a securement device on your lap, for instance, so you don't fall out. That's an analogy,
24:36charred rowing but it gives you the support so you can come up easily and start rowing and getting a great cardiovascular workout really quickly. That sounds really cool. Yeah it is and we've actually have several of these machines out there in the community. There's about 14 or 15 sites across Canada that have these machines now. We call it the A-Row, the adaptive rowing machine and the AST, the adaptive skiing machine.
25:01So, you know, your listeners can look for those. Absolutely. So just a couple more questions here for you. What are some of the biggest challenges you've had to face when it comes to this line of work and designing and getting stuff to the market? It's the last part of your question. It's like getting stuff to market. That's always the biggest challenge. And I'm not alone in that.
25:28you can almost ask anybody that wants to make a better widget, make better assistive technology is easier to do than it is to deliver it into the community in a way that other people can get access to it. You said it a couple of times, I think, in this conversation about ultimately, this is a niche market that is sharing the case with assistive technology across the board. So there's not a whole lot of
25:58coming from industry to create new products, new innovation. We're not the tech industry in Silicon Valley, for instance, that would be the gold standard, I guess, about innovation and how to get things to market. We have hundreds of users, dozens of users, or hundreds of users, occasionally thousands of users for certain devices only, depending on the device.
26:26That is always the trick and we are always struggling with how to do that more effectively. And how can organizations like DDA better serve the disability community from your perspective? I think things like you're doing right now, Evan, awareness and education. I think about the one great example I've been involved with for a long time now, this elevation wheelchair, which was developed locally here in the lower mainland. I will still all meet people.
26:56in my own community that have never seen this chair, that have maybe purchased two wheelchairs in 10 years and have never been shown it by a therapist or by a dealer. And I understand that they've been shown it, they tried it, they want it, and it wasn't right for them. They didn't feel it was right for them, but sometimes it's just getting that knowledge and that awareness of options and what types of products are out there. It's...
27:25it's again easier said than done. And so that's always been a challenge. It's a challenge in sports as well, I think. I've been involved with wheelchair basketball for, you know, for over 30 years. And again, there's people that have been in chairs that have been active that don't know about the opportunities that you can have in adaptive sport, for instance, in all the different programs. And it's just, you know, getting that message across as well as possible is at least
27:54I guess the low hanging fruit that we can all do a better job of. Absolutely. Well, I think that about wraps it up for another edition of DDA's Encouraging Abilities podcast. Our guest today has been Dr. Jamie Borosoff, director of MAKE+, British Columbia Institute of Technology. We've been chatting about technology to help create a more accessible world for people with spinal cord injuries. Thanks for joining us today, Dr. Borosoff. Thanks, Evan. It was a pleasure talking to you.