Inform & Connect, the American Foundation for the Blind’s live group conversation and podcast created to foster togetherness and camaraderie within the blindness community through informal storytelling and learning about relevant, interesting topics, returns with an episode featuring siblings Brian and Kerry Kijewski.
Brian and Kerry are both blind – they were both born with Senior-Løken syndrome, a rare syndrome that affects the kidneys and eyes, and they have both had kidney transplants. Both Brian and Kerry have gotten more involved in advocacy and activism over the last several years, and discovered the Canadian Federation of the Blind (CFB), where they found support and camaraderie from others, learning the ropes of advocating for themselves and others.
Brian is currently national treasurer of CFB, and Kerry is assistant editor of The Blind Canadian, CFB’s flagship publication. In 2018, they started a radio show, Outlook, on Radio Western at the University of Western Ontario in London, Canada, airing Monday mornings. The show about accessibility, advocacy, and equality and is now available as a podcast.
“We both believe in the power of telling stories from the art of living,” Kerry says. “Our unique sibling bond is at the heart of the perspective we share on our show.”
Transcript
Melody: ...But today, we have our special guests, Brian and Kerry Kijewski. How are you guys doing today?
Kerry: Good.
Brian: Very good. Thanks for having us on.
Melody: Oh, we're so excited to have you guys. And what's fun, you guys, is Brian and Kerry are brother and sister, so I'm really, really excited to have them be on here today. Kerry, can you tell us a little about where you guys are from, and a little about growing up and a little bit about your family and all that fun stuff?
Kerry: Sure. So, we are here in Ontario, Canada, which it is cold here too. Very cold. And I don't know, I believe there's some snow on the way, but that's okay because this is the time of year for that, so I don't mind. So, yeah, so we grew up here in sort of Southwestern Ontario, between London and Toronto, and I am three years older. And so, I was born in '84 and we had two siblings already, a brother and a sister who could see, but then surprise, surprise, I came along and sort of snuck up on my parents when they found out I was blind. So, it was a diagnosis of Leber's congenital amaurosis, LCA, and then three years later, Brian came along. So, yeah.
Melody: And Brian, now that you've come along, do you want to tell us a little bit about…
Brian: Yeah, so I was born, as Kerry said, three years later in '87, and at that point, throughout our whole childhood, I guess, Kerry being three years older, she was kind of the guinea pig, if you want to call it that. I mean, my parents had already had the blind child and they knew, based on the genetic condition, that it was, at that point, it was a 50% chance that it could happen. And again, so we have an older brother and sister who are both sighted, and then Kerry and I both have this syndrome. So, yeah, we grew up out in the country, which was really nice and had a nice big yard and just a really great childhood, happy family, very close family. Kerry and I have a very special bond because of our blindness and being only three years apart. But our older brother and sister were only five years older than me and seven years older than me. So, we were all pretty close in age and just a super close family growing up.
Melody: That is awesome. That is really, really awesome. So, growing up, I'm going to stay with you for a second, Brian, you just developed a love of audio. Can you tell us a little bit about that?
Brian: Yeah. So, this is going to come up probably quite a bit throughout this episode because it continues on today obviously, but-
Melody: Yeah, we're building your story.
Brian: Right. We got to start the building blocks somewhere. So, yeah, I was always fascinated by audio, and back in the early nineties, had tape recorders and those Walkmans that would record as well onto cassette. So, that was a big thing growing up, more for me than Kerry, although she was around it, so she helped out a couple of times. We'll get to it maybe in a bit, but we both also have kidney disease, so we both had transplants as well. And during that, she taped for me, taped my whole experience for me and made, I think it's nine 90-minute tapes, and I still have most of these tapes kicking around.
So, I mean, I kind of stopped really recording when I got, I think pretty much near the end of when I was in high school. I think I didn't think it was that cool to be recording as much, so I kind of cut back, but yeah, throughout childhood, just doing a ton of audio recording, sounds but more so for memories and stuff was the big part. And then that also led to my passion for music, which out of everything, is still my true real passion. Yeah. I've just always been a huge fan of music. And I just want to talk briefly. So, I started playing guitar as a kid. My brother also played. He never really kept it up. He kind of played for a year or two and sort of moved on, but I stuck with it. And I started when I was about eight or nine years old. And around that same time, as a kid, I was a big fan of REM and U2. They were my two favorite bands, but my brother-
Melody: Good bands.
Brian: Yeah, for sure. They were a great influence on me and I still have, especially REM, I still have definitely a connection to. But I just wanted to say, when I was about 10 years old, my brother, I mean, before that, he loved Nirvana and I was a huge Nirvana fan too. But about 1997, when I was 10 years old, he started telling me about these bands that his friend introduced them to that were kind of independent bands on smaller labels, underground bands, sort of a niche audience.
So, he told me about this band called Polvo and he had taped their CD off of a friend on a cassette. And I remember hearing it at 10 years old. I mean, super young to be hearing such experimental, sort of underground music. And it really blew me away. And from there, he introduced me to tons of bands, Tortoise, our favorite band, Thinking Fellers Union Local 282. So many crazy bands that most people haven't heard of, but they do have a very big sort of hardcore following. And from there, that love just continued. And even to this day, I'm obsessed. This year alone, I have a playlist in my Apple Music from 2020, I have 6,000 new songs from this year. So many albums.
Melody: I would definitely say you're a music enthusiast.
Brian: Absolutely, yeah. It's just been such a thing throughout my life. And it really keeps me going and keeps me excited about life, to know that there's so much great music still to this day, you can't even consume it all now. It's unbelievable. Whereas back in the day, my brother would go off to Toronto for a day because you couldn't find the CDs anywhere else but the big city and he'd go to the record store, would come back with 12 CDs after being gone for 12 hours. Sometimes, he wouldn't even tell my parents, he just be like, "Yeah, I'm going to a friend's." And then he'd come back from Toronto and we'd sit in my bedroom that we shared. We actually both shared. Kerry shared a room with our sister, Kim, and then I shared one with my brother, Paul, and he would come home and I'd check out all the 12 or however many hundreds of dollars he spent on CDs. And it's such fond memories, so I just wanted to mention that.
Melody: That's awesome. Because you talked earlier about how you guys have such a good bond. Kerry, you are more of the writer. Can you talk about how you guys kind of walked with through that? So, I know you do lyrics.
Kerry: Yeah, well, basically, we were very creative kids. My brother is an artist, now he's a photographer, and my sister is very creative and artistic. And so, actually, I started out in visual arts. It was low vision, whereas Brian was always just light perception through his whole life. But I used to have more sight, so I used to love to color and draw and colors, I loved them. And then right around the time we both were in kidney failure, sort of around puberty, I lost a lot of my vision. I lost my left eye, so it's artificial. So, I lost the ability to see color. So, I sort of moved into writing after that, as I needed something creatively, an outlet. And so, I did that. So, but I always went back to it with Brian. Like Brian said, I was... Oh, wait, we both were creative, we'd both come up with a lot of games and now we love doing stuff with audio. So, it's sort of transferred itself and I have started writing lyrics to his music, so we're a great team in that way, I think.
Melody: That is awesome. So, I want to transition to going into this building blocks here. So, tell us about, I've been waiting to ask this question, you guys in the audience, tell us about ketchup and pancakes, Kerry.
Kerry: It gets a reaction. Actually, it was something we had growing up. Our father's mother, she was our Oma, it was a family recipe from, I don't know even where it came. I should have asked her more about the origins, but it was a European thing. I don't know. So, the pancakes are more like flat crepes. They're saltier, made with egg and flour. So, they're not the kind of thing you would eat syrup on necessarily. So, if you want to picture that. So, ketchup was what we ate on them.
And so, I had this idea to do a podcast about five years ago, I guess. And I knew Brian was the audio engineer. And so, I thought I had that side covered and I was trying to come up with a good idea for a podcast. And I wanted to do one that sort of demonstrated our sibling bond. And it was just first one we did on our own and we made them in his apartment and everything, and we weren't sure who the audience would be. So, we went with that at first, because I thought the title would be interesting to people, get their attention, maybe gross them out a little, but they might want to tune in and listen.
It's not a cooking podcast, but it was based on three main themes, family, humor and creativity. So, it was Brian's music, we did episodes on that. We did episodes where we would turn my little stories into a audio story. And then we would use the old tapes Brian had of old memories. And so, we called that cassette clip of the week. So, we had it going there for a while, and we would just release them, not on a regular schedule, but it was fun.
Brian: Yeah. It was more like cassette clip of the month or cassette clip of the year or something, because we didn't do them as much as we'd hoped.
Melody: That is awesome. That is so great. So, that's kind of led us into your advocacy, which you guys are so very much into. Can you tell us a little bit about that? How that kind of the ketchup and pancakes transformed to what you're doing now?
Brian: Yeah. So, it's called ketchup... Ketchup. Words here. I'm thinking pancakes. So, Ketchup on Pancakes, you can still find it online, although we kind of rebranded because well, for one, we weren't doing them as regular as we wanted. So, I guess, kind of trying to sort of remember, but pretty much in, just to go back a little bit to my love for music, I finally started a music radio show. I've been meaning to do it for years. And finally, I turned 30. I was like, I'd just finished music industry arts at that point, the course-
Melody: MIA.
Brian: Oh, sorry. Yeah. Media. Well, you can ask about it again and I'll make the joke. But yeah, so, I graduated from MIA and I wanted to do this music radio show forever to really expose people to this unique sort of experimental music, really promote local bands and stuff that I found interesting that just wasn't being played enough. So, I went to the university station, started a music show there in 2017 and it was really a dream come true, such an amazing experience, and about, I guess soon after I started, they hired a very great program director and she, at one point, she was really friendly, she'd come meet me at the bus sometimes to walk up to the station, just such a great person. And at one point, I eventually told her I had a podcast called Ketchup on Pancakes. And like most people, she was like, "Oh, really?" Caught her off by surprise. And she said, "I want to check that out."
So, she checks them out and I got a text from her. She's like, "I don't know if this is a crazy idea, but would you be interested in airing Ketchup on Pancakes on the station?" And I thought that would be cool. It was a little hard to understand because it was something we dealt with with our podcast, where it's a very personal podcast because it has a lot of inside jokes and stuff, but we also want to try to get listeners, so it's hard to balance that. And they would have had to maybe do a bit of editing for the air because they have promos every half hour, a few different things. Whereas a podcast is very open-ended, and in our case, we didn't even have a set time limit really. Some of them were two hours, some of them were 45 minutes.
So, we kind of got one edited for the air and it never really turned out because around that point, we'll speak more about this, but that's when we kind of started getting into advocacy near the end of 2017, with a friend, a good friend of ours for 20 years, introducing us to an organization here in Canada we hadn't heard of called the Canadian Federation of the Blind. And with this new interest in blindness and really starting to connect again with the blind community, both of us were integrated in the public school system growing up, so we had a couple blind friends, but we weren't really too connected with that. So, this really brought us back in and really got us into advocacy.
And then when Pam, the program director at the time, suggested this podcast, I kind of thought maybe we should, I think it was me who made that decision. I can't remember if it was me or Kerry that suggested, but I think I just thought, now that we're getting into this advocacy thing, maybe something a little bit more specific. Ketchup on Pancakes was a little bit more open-ended, which sometimes, I wish we did kept that on the air, but at the same time, I thought this stuff is really important. It's something that needs to be talked about. Disability, blindness and all disabilities aren't talked about enough in the media. So, we thought this would be a perfect time to maybe start doing that.
So, I suggested that, and at the time, the program director said, "Yeah, that would be great." So, we started going into the studio every Monday morning for a half hour and doing the show that we called Outlook, and we've been doing it to this day, we're coming up on our hundredth episode, so pretty amazing.
Melody: That's incredible. That is awesome. So, dream come true. And just growing from something that you guys were playing with, and that's one thing, I think in advocacy, and doing even things here at AFB, is really getting yourself out there and doing things, you started with a cassette, and then you moved into these different areas, with you guys doing that. Kerry, what was that like, to be able to do that show for you? Do you do writing for it?
Kerry: Yeah. So, I usually come up with the theme or the idea, and then I will usually write out the outline, if nothing else. But we usually just, we would talk about what was in the news, a lot of blindness issues that would come up. I would read books and we would sort of talk about them, review them. And yeah, but it was just fun being on the air with Brian. And it's a different challenge. Ketchup on Pancakes, we were able to edit that and make it sound perfect. And Outlook, we were just there on the air. You had to stick with what came out of your mouth in moments. So, it forced us to be on our toes and to think on our toes. But it was just nice.
We got a lot of media attention really quickly, the station hadn't heard a show kind of like that. And so, the news sort of reached out that first winter and contacted the station and interviewed us. And we got some good exposure and stuff, but it was just good because we didn't feel like there was enough, the blindness community here in Canada, we're such a big country. It's so spread out. And so, yeah, we were finally meeting new people in that community. And we wanted to help sighted people and blind people realize the possibilities that are out there, while discovering them ourselves.
Melody: I love how you pointed on that, Kerry. When you think of advocacy, even prior to the show, when we were talking about how inclusion is for everyone, sighted, non-sighted, every disability, because that's really what inclusion is, for us all to be together. When you came into really finding that organization and meeting more people that were blind, did you pull a lot of ideas from the stories you've heard into what you guys talk about?
Kerry: Oh, yeah. I mean, all we had here really growing up that we knew of was the CNIB, which I don't know if people in the US have really heard of, I guess, maybe. Canadian National Institute for the Blind. And they were a help growing up, but less and less over the years as we became adults, and we hadn't really gotten into advocacy. My mom and our parents do a lot of it, they had to do a lot of it to get us the resources we had growing up. But finally, it was our turn and we just felt like we were old enough now that it mattered, we wanted to make things better for ourselves. I wanted to make things better for Brian and vice versa, I guess. But we wanted to do it for others.
And so, as soon as we started meeting a lot of others, yeah. I mean, I got to see some of the isolation and some of the lack of resources that have sort of come with budget cuts and things over the years, this happens and everybody's so scattered, but this was a way to sort of bring it all back to a main focus and sort of…
Melody: No, I love it. That's great. Brian, what did you get out of that? And then where do you kind of see your show moving or, or your career, for that matter? Where would you want to see that going?
Brian: Yeah. So, we got into the CFB, the Canadian Federation of the Blind in 2017, and they were mainly out west in Canada. And like Kerry said, they weren't kind of touched on. I mean, they weren't really that widespread. They weren't really talked about, even still to this day, we're a pretty small organization and we're trying to grow, we're trying to get more blind people involved, but we pretty much model a lot of things off of the NFB in the states.
And in 2018, we went to our first ever NFB convention in Orlando. And that was right before we started Outlook, and that probably also spurred my eagerness to do that talk show, because going to that convention really was a pivotal moment in my life. Just like I said, growing up and having, we used to go to a small camp, summer camp in Woodstock, the town we grew up near, with blind people as a kid, but we didn't really have that connection. So, going to a place where there were 3000 blind people in a hotel with all these careers and all of this going on was just, you can't put it in words, you really have to be there. And that really spurred it on. The same year, well, before that, we went to the Canadian Federation of the Blind in BC and there was, what, 50 people there. And then two months later, we ended up going to Orlando to 3000 people. So, it was just such a crazy year in 2018 and really spurred that on.
And it just, even to this day, advocacy is tiring. And it's hard to be on all the time, but it's getting a bit older too, I think it's become more important, and the fact that when you're younger, you want to have that fun time and you really want to focus on yourself. Whereas you get to a point and you start to think about these bigger issues. And I think our show has definitely come a long way. When it was just us in the studio, it was nice, but we didn't have as many guests on, because you either had to have someone in the studio with you or they had to be available Monday morning at 11. I mean, you could have done pre-records then, but we weren't as enthusiastic.
Whereas this year, some of the silver lining that comes from the pandemic, I guess, is being able to do these shows virtually, prerecorded from home and send to the station. So, it's allowed us to really connect with more guests. And I think this year, I don't even know how many, but we've had over a dozen guests this year. So, it's been really great and we plan to have many more in the future.
Melody: That is awesome. No, I definitely agree with you that, in the silver lining of a situation, we've been able to connect more broadly. And I think that really showcases our abilities as blind individuals too, of our abilities, to what we can do. And I think that puts us sort of front and center. I can play this. We are already at our time for the question answer part, and I'm sure we have a lot of our guests, but I wanted to thank you guys so much for being here and talking this out with me. This has been a lot of fun. And yes, he stole my joke, you guys, because he was telling about his program. It says MIA, and I said he was missing in action, but he swore to me he only missed a couple classes.
Brian: Yeah. Only a few.
Melody: Only a few. All right, Liz, we're going to hand it over to you for the question and answer part.
Liz: Yes. And we do have a few questions that come in. Brian, you touched on this a little bit, but someone did ask about living in this COVID-19 world, has it changed the format of your show?
Brian: Yeah, I would say again, it's the fact that we've had more guests because, well, for one, we did have a couple of live guests on the air when we did the show, but I never really, I mean, I had already learned the station at that point doing the music show, so I knew how to work the console there and all of that, the microphones and all that stuff, but never really mastered the phone system. So, this has really allowed us, just being home and then a lot more people being around too and not as busy, to just get so many more guests. So, I would say that changed the format.
Plus when they were programming everything remotely, things had to be a bit more exact. So, around that time, we were doing a half hour one week and an hour the next week, and that got too confusing. So, they said, pick a choice. Do you want a half hour or an hour? And we weren't sure because it's just the two of us. It depends on the week, but sometimes, it can be a little tricky to always fill that. But when you have guests, I mean, I don't like interviews generally that are too short because you barely get to know someone. So, I thought, let's just try it. Let's just go for the hour. So, that's another thing that changed, our format became a full hour, and having a bit more time, I guess, and just nothing else to do, I finally got it up as a podcast. So, Outlook on Radio Western is on all podcast services now, and that's another development that happened.
Melody: Awesome. That's great.
Liz: Exciting. A general question about your goals for the show. What do you want your listeners to get out of your show?
Kerry: I think it's just to hear me and Brian running our own radio show, Brian talks about that part of it. So, anybody who might be interested in radio, if they hear it, they might realize what options are out there for them. So, we're trying to get listeners, but hopefully our listeners, it broadens their horizons, whether you're blind or you're sighted, about what your options might be. And for sighted people, what blind people can do. So, I think it's been good that way, trying to get our message out there, but at the same time, we like to have some humor. And so, we like to tackle serious subjects and some lighter stuff, and yeah. I don't know if you have anything to add, Brian.
Brian: Yeah, I'm not too sure.
Liz: Well, and a follow-up question here, since a lot of advocacy is educating the general public, do you have any tips on reaching non-disabled people?
Melody: That's a good question.
Brian: Yeah, I guess I'll probably get Kerry to take this in a minute, but I think the big part of our show is to really normalize blindness. And we say at the beginning of the show, it's inspired by the Canadian Federation of the Blind. We talk about our guests being blind, and we've had sighted guests on too, but it's trying to really normalize it and not always focus on it. We have someone who's blind on the show, we don't automatically talk about their blindness. We talk about them for a bit first, and then maybe mention that they're blind. So, it's really just trying to put it out there. When I was going into the station, even there, just doing a music show and then Outlook, it showed the audience and the people at the station that this could be done. And just in a way, that's its own advocacy, just going in and doing the show.
So, as far as reaching the public, I think it's just getting out there is really the way to go. I mean, doing the show is a great way, but also, I mean, maybe not right now so much with everything going on, but trying to get out into the community as much as you can, getting out, being around people as much as you can. Kerry could talk briefly about it. People would probably find it interesting. She traveled to Mexico all by herself. Just eventually getting to a point in life where it's like, okay, let's just go for it and figure it out as I go, instead of worrying, sitting there thinking about all the things that could go wrong, because generally, none of that ended up happening anyway. So, just trying to stay positive and just push forward and just go for it.
Kerry: Yeah. I know I'm a worrier. I sit and think of all the things that could go wrong with something. And so, I've started learning in the last five, 10 years just that there's going to be fear. There's always fear. I have fear all the time, but having Brian in my life has helped, I admit that, but also just reaching out to people, and not being so shy and afraid and being so worried about what people will think of me, because they're not going to think anything more if I don't get out there and just live my life and show them that things can be done if you want them to be.
Brian: Yeah. I mean, we've been talking like crazy here, but we're generally kind of shy people.
Kerry: Less and less.
Brian: Yeah. Less and less.
Liz: I love it. And I think we have time for one more question here. This is a good one from the personal angle. What was it like growing up with a visual impairment with sighted siblings?
Kerry: Yeah. I mean, it was great. We had two boys and two girls in our family, so it was very even. Two blind, two sighted. And I think just as close as we all were, luckily, we lived like any other family and we were siblings like any others and we had our fights and our connection and what made us different and what made us a family. And so, I think them having us in the family I think was good, it taught them inclusion and about diversity early on, and us having them, it's always nice to have siblings who can drive eventually.
Brian: And they develop some skills. Our brother, I mean, he's very, very good at describing movies, better than a lot of the audio description that's already on the movie.
Kerry: He should be hired. If he didn't have another job already.
Liz: That's awesome.
Melody: I love it. I do. So, just to piggyback on that, did we have one more question? Any more questions, Liz? I had a question if not.
Liz: Not seeing any in the chat right now. So, I think, go ahead.
Melody: So, when you were growing up in school, because we have about two minutes left, and we've touched on this a little bit briefly, but when it came to advocating for yourself, was being an inclusive classroom, how was that? Did you feel like you had the same advantages as your sighted peers?
Kerry: Yeah, I think that was great. It was a struggle at times, but that was more when the kidney failure got involved. As far as blindness, Brian and I, I think we really did thrive, whereas I know not all children do, but we had a braille teacher and a teacher of the visually impaired and classroom assistants, so we had a lot of support, and our parents were always supportive and yeah, it was a great experience, I think. Think it built character in us. That's good. And it taught us about that there is a world. I mean, if you grow up in a school for the blind, it's a little harder to go out into the world after that with mostly sighted people. So, I think it just, it was good.
Melody: Cut. Thank you for that. Thanks for sharing. Well, you guys, if anyone, we are headed to close, but I wanted to ask Brian and Kerry, if people wanted to tune into your show or maybe want to offer topics or reach you, how could they do that?
Brian: Yeah, they can email us any time at outlookonradiowestern@gmail.com. So, that's outlookonradiowestern@gmail.com. So, yeah, email any time if you have any feedback, any questions, if you're interested in being on the show, if you know of anyone that would be on the show. So, you can always reach us on that email. And we're also available on all podcast services at Outlook on Radio Western as well. So, it's very easy to find us there. And we're on Monday mornings at 11:00 AM, Eastern Standard Time live on radiowestern.ca.
Melody: Awesome. And Kerry, you write a blog. Where can we find that?
Kerry: So, that's, that's at kk for Kerry Kijewski, her headache. So, I've had chronic pain for many years.
Brian: Kerry loves technology.
Kerry: Yeah. So, technology gives me headaches. It's a beautiful, painful thing in my life. And I think that's what life in general is, a beautiful, painful thing. So, yeah, I started my blog when I turned 30 and I use it to sort of demonstrate my writing and, but yeah, anybody can check that out. So it's kkherheadache.wordpress.com.
Melody: Thank you guys so much. I've really enjoyed our time together.
Brian: Yeah, it was a lot of fun.
Melody: I'm glad.
